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... Role of Occupational Therapy for Patients with Visual Deficits Hailey Brown May, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Lori Breeden, EdD, OTR Running head: ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL 2 DEFICITS A Capstone Project Entitled Role of Occupational Therapy for Patients with Visual Deficits Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Hailey Brown Occupational Therapy Doctoral Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 3 Abstract The purpose of the doctoral capstone experience (DCE) at Rehabilitation Hospital of Indiana (RHI) was to enhance clinical skills specifically in vision occupational therapy as well as develop resource documents ensuring complete educational opportunity for patients with visual impairments. A clinical needs assessment was developed to understand how often patient education resources are provided to patients/family, nature of the resources provided, availability of resources, and the overall level of health literacy. To meet the demand, several resources and a resource filing system were developed to create ease for therapists when providing exceptional care to patients. Resources included larger print documents available for low vision patient binders, low vision resources and organizations in the Indianapolis area, vision specific fall prevention information, a home evaluation record sheet for therapist use, and a large print vision occupational therapy advocacy flyer. Therapists at the Rehabilitation Hospital of Indiana (RHI) have access to all electronic copies of the documents as well as printed copies kept in the vision therapy room. Sustainability and carry over was discussed, as my site mentor will be responsible for continuation. Literature Review Vision Impairment and Occupation Estimates suggest there are 3.22 million people in the United States with visual impairment, despite best correction, which is expected to double by the year 2050 (Varma et al., 2016, p. 802). Smallfield, Berger, Hillman, Saltzgaber, Giger, and Kaldenberg (2017) described low vision (LV) as a visual impairment that results in a decreased ability to perform daily activities despite best correction (p. 314). LV affects more than 5.5 million older adults in the United States; daily activities, social functioning, and overall quality of life can be altered due to ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 4 this condition (Sanders, 2018). Age-related macular degeneration (AMD), glaucoma, diabetic retinopathy, and cataracts are the four main causes of LV in older adults; these conditions can result in progressive and commonly irreversible vision loss that threatens older adults functional independence level (Liu, Brost, Horton, Kenyon, & Mears, 2013). Persons with LV have difficulty maintaining regular participation in occupations that are important to them; often, the progressive vision loss will force them to lose roles and forfeit occupations all together (Girdler, Packer, & Boldy, 2008; Brown, Goldstein, Chan, Massof, & Ramulu, 2014). Nearly all occupations, roles, and tasks that older adults participate in everyday life can be affected by impaired vision. Throughout occupations, daily performance reading tasks are the most cited complaint of older adults with LV in the United States due to the continuous use in the majority of activities of daily living and industrial activities of daily living (Baylock, Barstow, Vogtle, & Bennett, 2015; Brown et al, 2014; Smallfield, Clem & Myers, 2013). Personal computers, medication prescriptions, food labels, and household cleaners are a few examples of what individuals might have difficulty reading within a day (Smallfield, Clem & Myers, 2013). Misreading directions or dosages on labels could create a safety hazard and become quite dangerous. Evidence has shown community and social participation are important to the overall health and well-being of a person (Johnson and Mutchler, 2014). In a study conducted by Rovner and Casten (2002), 70% of participants reported activity loss because of age-related vision loss, and 83% of those participants reported greatly missing the activity. Brown et al., (2014) found similar results when asked about their chief vision complaints, participants reported reading and driving (Brown et al, 2014). Older adults with visual impairments reported higher difficulty attending the movies, religious events, or recreational places than older adults without visual ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 5 impairments (Alma et al., 2011). In light of these limitations to participation, older adults my have the desire to dine out with friends, though they fear embarrassment to ask for a ride or the realization they might have difficulty reading the menu (Smallfield et al., 2017). Decreased social opportunities can lead to isolation, loneliness, and depression (Berger, McAteer, Schreier, and Kaldenberg, 2013). Vision Based Occupational Therapy Occupational therapy practitioners are increasingly providing interventions to improve the self-management skills by modifying lifestyle and health behaviors to minimize LVs effect on daily life (Richardson et al., 2014). The Centennial Vision of the American Occupational Therapy Association (AOTA; 2007) identifies LV services as an emerging area of practice. Occupational therapy efforts to improve visual performance for those with LV including increasing magnification, size (text or symbols), and lighting levels (Sanders, 2018). For practitioners working with older adults with LV, its important to consider identifying factors that may clarify a clients willingness to accept or not accept LV interventions; it will provide essential information for intervention planning (Mohler, Neufeld, & Perlmutter, 2015). Fall prevention. Niihata et al. (2018) reported 30% of community-dwelling older adults over 65 years fall at least once annually, with 5% of falls resulting in fractures and 10% of falls resulting in other serious injury (p. 2). Various intrinsic, extrinsic, or situational factors can lead to a fall. Niihata et al. (2018) found that one of the most important intrinsic factors contributing to the fall risk is vision impairment. Similarly, Baylock (2018) stated that older adults with LV are twice as likely to fall as older adults without vision loss. Assessing individuals with visual impairments and following with ADL modification are important fall prevention interventions (Niihata et al., 2018). Fall prevention interventions and modifications designed specifically for ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 6 older adults with LV are limited; available strategies often require clients to rely on the ability to view demonstrations or read printed or electronic handouts (Crews, Chou, Stevens, & Saadine, 2016). Health literacy. As previously stated, one of the most impacted occupation-based task is reading (Brown et al., 2014). Functional health literacy is the ability of a person to acquire health knowledge by locating and using information in documents, deciphering numbers, and completing calculations (Warren, DeClaro, & Dreer, 2016). It is a skill dependent and influenced by intrinsic and extrinsic variables; vision being a huge factor (Warren, DeClaro, & Dreer, 2016). Variables such as educational attainment, profession, socioeconomic status, culture, age, innate intelligence, primary language, and cognitive deficits are also mentioned. Jaffee et al. (2016) mentioned that, because insufficient vision may interfere with health literacy assessments, the full impact of low health literacy among older patients with impaired vision is unknown (p. 136). Warren DeClaro, and Dreer (2016) investigated whether older adults with LV with macular degeneration displayed lower functional health literacy than older adults without LV by administering the Test of Functional Health Literacy in Adults (TOFHLA). The group with LV had lower TOFHLA scores with increased time noted to complete the test; of the LV participants in this study, 70% had been to college and read on a daily basis, but they still had lower TOFHLA scores than their peers without LV (Warren, DeClaro, & Dreer, 2016). Researchers provide multiple changes to simple health resources to improve availability and health literacy for visually impaired patients, all in which occupational therapists can implement in intervention for everyday living. ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 7 Theoretical Basis The occupational adaptation model is driven by clients becoming adaptive to regain function (Schultz & Schkade, 1992). Occupational therapy with a focus in visual rehabilitation can utilize this model to assess a persons ability to engage in and perform occupations with mastery. Their adaptive capacity and demand for change can create improved function. There are internal and external factors occurring with the person that could influence their ability to adapt to their environment if they are viewed as barriers (Schultz & Schkade, 1992). Intrinsic factors include cognitive, sensorimotor, and psychosocial systems, while external factors include physical, social, and cultural influences that effect their ability to adapt to their occupation (Schultz & Schkade, 1992). Visual disability impacts the way an individual will maneuver in their environment and just as the environment to could influence the person. In summary, the person and environment are continuously interacting through occupational engagement. A visually impaired client must generate, evaluate, and integrate new adaptive techniques and strategies to engage in the adaptive process in response to occupational challenge. Within our scope of practice, the goal of therapy as guided by this theory is to increase and capitalize on the clients capacity to adapt, with the client as the primary contributor. As research previously examined conveys, there are numerous benefits to low vision occupational therapy that help increase an individuals ability to live more independently. Occupational Therapists take a holistic approach that considers a clients comorbidities, mobility, the home and community settings where they engage in meaningful activities. To enable patients to receive these services, it is necessary to market the vision rehabilitation program to local health care providers. Referrals may be made by primary care physicians, optometrists, or ophthalmologists and therapy services are covered by Medicare, most private ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 8 health insurance programs, and Medicaid in the state of Indiana. Educating these referral sources can support clients with low vision who may benefit from increased opportunities to participate in their chosen occupations. Screening and Evaluation The determined goals and objectives for the capstone experience were formed in advance and edited throughout the weeks leading up to the start date. The first two weeks of the experience were utilized to understand patient flow in the vision program at RHI and Neurorehabilitation Center (NRC). During that time, the referral, patient experience and discharge process were all introduced and explained thoroughly by the site mentor. A formal needs assessment was completed during the third and fourth week. The purpose for the assessment was to determine the level of health literacy and demand for patient education materials within the vision occupational therapy department at RHI and NRC. An eight-item Google Form survey was sent via email to the five vision department staff members in order to determine the needs of the program. The needs assessment was constructed to highlight four topic areas: use frequency of patient and family education resources, nature of the resources provided, availability of resources, and the overall level of health literacy levels of these resources. Three therapist shared their responses via Google Form, refer to Appendix A, as well as verbally after completion to expand their thoughts. In the results, practitioners answered that they are providing patient/patient family resources often or for every patient they treat on their case load. When asked what resources they are most often providing, having the ability to choose more than one answer, 100% of the respondents provide home exercise programs, 66.7% provide Medical Doctor (MD) or Optometry referrals, 33.3% provide home modifications and compensatory ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 9 strategy information, and 33.3% provide school modifications and accommodations for the pediatric population (see Appendix A). The least frequently provided resource was fall prevention information and diagnosis specific vision education. As indicated by Blaylock and Vogtle (2017), individuals with visual impairment have increased risk for falls which can impact health and negatively affect occupational performance. With review of literature, Casteel, Jones, Gildner, Bowling and Blalock discuss fall risks and prevention behaviors among community-dwelling older adults and discover that having efficacious programs, in addition to an infrastructure that will support long-term implementation, is becoming increasingly important as the population of older adults increases and they are choosing to age in place (2018, p. 1098). NRC is an outpatient clinic providing therapy to patients post-neurological event; the majority being home-dwelling individuals with a vision impairment. Fall risk has increased with visual impairments and patients should be provided with education for home modifications to decrease that risk (Casteel, Jones, Gildner, Bowling, & Blalock, 2018). The next section of the needs assessment focused on the resources not available or resources the therapists would like to modify. Therapists were provided with an open comments section in which desired resources were relayed. These included diagnostic information sheets, low vision services available in the Indianapolis area, fall prevention, and pediatric focused family/teacher education (see Appendix A). Modifications to resources were mentioned including: intervention sheets, handouts patients receive to enlarge print size, and pediatric home exercises. Health literacy is the next topic addressed in the assessment. Thirty-three percent of the therapists responded that the materials used are not health literate, 33% responded maybe, and the last 33% responded with an added note, I feel like the ones we typically use are, but ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 10 perhaps rarely used ones arent (see Appendix A). After each completed assessment, therapists approached me to further discuss their interactions with patients. Generally, therapists found themselves frequently explaining a majority of their resources for patient education, through making changes to the sheet itself for ease of understanding. The lack of health literacy in the resources provided to the impaired vision population in both clinics can be an issue of compliance and overall improvement in occupation. Warren, DeCarlo, and Dreer (2016) compare health literacy in older adults with and without low vison and discovered a consistent complaint of a heavy reliance by health care providers on using visually inaccessible print materials to deliver important information. Similarly, Dumas, Carmody, Black, and Blake (2018) urge occupational therapists to be the lead in efforts to provide quality education materials. RHI and NRC vision services will benefit from improved or additional patient resources that have an appropriate level of health literacy. The need for health literate and accessible patient education resources is not isolated to one practice area. Individuals with vision impairment after a neurological event or more slowly acquired low vision can encounter this issue in healthcare settings. For example, a patient encounters many different levels of therapy from onset of stroke to accomplishing all goals. Most likely, they would receive therapy in the hospital on to acute rehabilitation or sub-acute rehabilitation and potentially following up with outpatient therapy. All of those settings frequently provide patient education. Occupational therapy practitioners should be aware of all aspects of the health care environment and their opportunity to assist in adjusting the environment to fit client needs to improve their overall health and functional outcomes (Smith & Gutman, 2011). ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 11 Implementation Phase After completion of the needs assessment and continuous communication with RHI therapists, results led to the implementation of multiple resources that are specifically developed for those with visual impairments. Patients admitted into inpatient rehabilitation receive a binder upon arrival including multiple documents such as a welcome letter, map providing the location, necessary phone numbers, contacts, and more. All documents are printed in size 12 font with single spacing, posing difficult readability for a patient with vision loss/impairment. Documents and resources deemed difficult to read or understand by the Short Assessment of Health Literacy tool and were edited and enhanced to meet the needs of visually impaired patients at RHI. These documents are stored in the admission office, vision therapy room, and therapy resource file cabinet. In both the outpatient and inpatient settings, there were no existing documents for vision programs/resources that are currently provided in the Indianapolis area. In the past, therapists would provide patients with information on Indianapolis resources by hand written note or verbal communication. With observation of this process and speaking with multiple therapists, I decided to develop multiple documents providing information including local adaptive sports opportunities, audio services, awareness and advocacy groups, continuing education, employment resources, equipment and technology vendors, and transportation options for the Indianapolis area. Each category listed above is printed separately on a uniform template to create ease for therapist when retrieving handouts for each individual patient, see Appendix C for example. Extensive research and communication with RHI therapists was completed throughout the experience in order to create each resource of high quality organizations. ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 12 The vision team also has the opportunity to provide in-home evaluations for patients to implement a visually supportive and safe environment. Currently, they were utilizing the Low Vision Home Safety Assessment tool to discover hazards, surface area, lighting, clutter, glare, contrast, and other obstacles that may challenge function in their home. The assessment tool is extensive and follows a room by room progression. It was brought to my attention during a staff meeting that the assessment tool is difficult to use while at the patients house due to the number of pages and blanks to complete. To decrease this frustration, a record sheet was designed and implemented for the therapist to use during the evaluation that correlates directly with the Low Vision Home Safety Assessment tool. The record sheet follows the same room by room progression and obtains a list for therapist to check throughout each room. An example of items to check in each room could include lighting, contrast, floor surface, door thresholds, ability to use doorway, patterns, dcor, obstacles, hazards, position of light switch, accessibility to light switch, shadow, and glare. Each room has different items to consider as each room purposes various function. As previously mentioned, individuals with a visual impairment have an increased risk for falls which can impact health and negatively affect occupational performance (Baylock & Vogtle, 2017). It was noted early in the capstone experience that there was no fall prevention program in place for the vision department. As research suggests, vision is a contributing factor in fall risks within the home (Baylock & Vogtle, 2017). Over the course of 14 weeks, I conducted an independent literature review of 24 articles to gather the most current information on fall risks and prevention strategies. I created a document organizing information from the literature such as general fall risk factors, visual impairments leading to falls, average age affected, type of home environment, readmission rate, and prevention strategies that were ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 13 specific to vision. This document was provided to the vision team as well as a binder including all of the articles used in the literature review. The literature review provided was foundational to the design of a patient friendly and health literate resource on fall prevention for individuals with visual impairment. This document includes environmental changes such as removing obstacles and hazards, lighting up the living space, and using assistive technology or equipment. In addition, the document provides tips to remain healthy and active, see example in Appendix D. Specific tips are listed, though the document should be used to educate the patient in a way that is personalized to their home environment and best fir their needs. The vision team at RHI has a goal of increasing referral sources for low vision rehabilitation in the Indianapolis area. Multiple marketing calls to physician, optometry, and ophthalmology offices offered numerous providers information on how low vision occupational therapy could benefit their patient. At each meeting, the marketing representative would provide the office with resources such as prescription pads, vision occupational therapy flyer, and RHI informational booklets. The brochure provided the occupational therapists exact role and the services available to the patient. Additionally, a vision occupational therapy brochure was designed that is accommodating to the low vision population. This brochure had an increased font size and spacing, bolding for emphasis of certain words or phrases, and increased contrast. This can be displayed or offered to patients in the optometry offices to help guide physicians in explaining RHIs vision services. To appropriately and successfully implement this system within RHIs overall daily systems, the vision staff was provided with a brief overview of the available resources and the purpose of each. During monthly vision team meetings, use of the re-designed documents was reviewed and examples of how to include the resources their daily treatment were discussed. The ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 14 goal of this educational process was set to create consistency and efficiency, offering the therapist to increased time for therapeutic activity and exercise within their session. Staff development was implemented through education of how to utilize these resources in a timely manner and maintain easy access in the vision room. The time that would have been spent writing the information during the session is now spent reviewing with the patient using the resources already available. In the midst of program development, it was important to understand the level of selfdirection I would need to successfully implement projects. As a student, I assumed a leadership role by planning, developing, organizing, and marketing multiple projects at once. One of the skills that was vital throughout the capstone experience was communication. I was able to clearly and succinctly explain the goals and objectives of each individual project to my site mentor as well as the vision department. Active listening skills are an important component to effective communication. During the needs assessment phase, the vision department voiced their needs and I communicated my understanding and plan of action. This communication and consistent interaction between the site mentor and myself allowed for a smooth process with editing and implementing the resources within the clinic. It was important to be open to feedback and learn from each other. Developing advanced clinical skills in addition to designing patient education materials and program development created a need for an organized schedule. Each day, I would plan for time to work on projects in between patient appointments and meetings, but daily adaptations to the patient schedule required my flexibility. The site mentor trusted that I was making progress on projects throughout the course of the capstone. We held weekly meetings to review progress; I was then responsible for generating a plan for progression to continue. Independent leadership ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 15 skills allowed me to initiate a multitude of tasks as I was self-directed with the entirety of the capstone. I had confidence in my ability to lead a group of occupational therapists in multiple projects which then allowed me to be a better student and clinician. Discontinuation and Outcome Phase Toward the end of the capstone experience, an outcome study was created to analyze the effectiveness and efficiency of the resource system implemented within the vision program. The outcome measure used six Likert scale style questions on satisfaction level (see Appendix B). Therapists were given the satisfaction survey within the last two weeks of the capstone experience in which four therapists on the vision team turned in completed surveys. These results indicated 100% satisfaction as all therapists responded to each of the six questions with completely satisfied. To continue the use of vision resources, I provided the vision department with the document files on RHIs shared drive to enable access at all times. Several copies of each resource were printed and organized into filing cabinets in both the outpatient and inpatient offices to insure their availability within the clinic. The resources were implemented within the last two weeks of the experience allowing me the time to promote their availability to staff therapists in a more organic way. The site mentor will ensure that the resources will remain in stock in the filing cabinets at all times. The documents located on RHIs shared drive will allow for addition of information or editing as future patients require. Any individual with age-related visual diseases, neurological injury such as stroke or head injury, or trauma to the eye can benefit from vision occupational therapy. To effectively assist patients to use their available vision to function independently, it is necessary to provide resources and additional information to ensure mastery of their occupational performance in all ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 16 of their occupational contexts. The capstone experience has provided the opportunity to meet the needs of individuals with low vision and make an impact on their safety in the home, provide them opportunity to engage in their community, and better function through the proper use of adaptive equipment. Overall Learning Throughout the capstone experience, I have had the opportunity to interact with patients, patients families, therapists, physicians, and marketing personnel on a consistent basis. Completing advanced clinical skill has enhanced my comfort when communicating with a patient and their family about their diagnosis, care, and prognosis. I utilized the newly developed resources and called on prior experience to educate as efficiently as possible and ensured their questions or concerns were addressed before discharge. Within the program development focus of my doctoral capstone experience, I verbally communicated daily and sent emails weekly. I took initiative to relay the status of my projects to the vision therapists and I asked appropriate questions to ensure the quality of the resources. It was empowering to experience the impact vision occupational therapy can have on a patients life. Without the compensatory strategies and skills to utilize their remaining vision, their occupational performance would have suffered. This experience has provided me with an opportunity to gain the knowledge of proper care for these individuals, and I will be able to utilize that knowledge in many settings. RHIs low vision program provides services to a wide variety of patients with various diagnoses. Through clinical practice, I have learned to assess a patients oculomotor skills, overall visual attention, reading skills, acuity, and visual perception ability. I understand how to make an appropriate decision when creating a patient plan of care and also when to refer to an optometrist, ophthalmologist, or neuro-optometrist based on their presentation. Throughout the ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 17 doctoral capstone experience, I have evaluated and treated patients with concussion, stroke, brain injury, low vision, and multiple sclerosis who may have symptoms of visual field cuts, diplopia, light sensitivity, visual inattention, or visual perception difficulty. Within all patients plan of care, I utilized the just right challenge and graded appropriately considering their needs. Leading into discharge, I took advantage of the newly available resources to provide the patient with proper information and techniques to continue use of therapeutic techniques after returning home. The experience of treating patients with visual deficits provided me with direct insight as to how occupational therapy can implement daily interventions for improved occupational performance. Treating patients on a daily basis complimented and provided additional insight to the development of vision resources. Not only did I gain intervention experience, but the capability of creating a new resource system within a highly respected program as well. The type of leadership embodied in a system links to sustainability of the program by the desire of the team members (Metcalf & Benn, 2012). Executing that link required consistent engagement and dynamic changes to fit the needs of the client. I was able to expand my creativity, logical thinking, and leadership abilities through the overcoming of systemic challenges to meet the needs of my client, RHI. Creating a program over the duration of 14 weeks demanded high quality time management skill. I created an outline of each week and organize thoroughly my goals and objectives, though barriers did arise creating the need for multi-tasking and problem solving in order to complete the resource system. Each of the individuals I had the opportunity to work with were very professional and lead by example each day at RHI. The vision occupational therapy team was eager to assist in any way and willingly answered a number of my questions. Observing their positive demeanor ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS and ideal communication skills created an optimal learning environment for the 14-week experience. I attribute most of my leadership and advocacy skills to not only observing my site mentor, but the entire RHI staff. The vision team allowed opportunities for me to advocate for vision occupational therapy by speaking to different optometrists around the Indianapolis area discussing what services we are able to provide to their patients. As occupational therapists in distinct roles, it is important to speak out to other health professionals to help patients receive needed services and share the distinct value of our services (Walsh, 2018). This creates an opportunity to advocate for occupational therapists to be present in many settings and receive referrals for patients who have visual impairment. Creating relationships with referral services, then providing their patients with excellent interventions is a great way to promote our profession. The skills observed and captivated during my experience will carry over into my early career as an occupational therapist. 18 ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 19 References Alma, M. A., van der Mei, S. F., Melis-Dankers, B. J., can Tilburg, T. G., Groothoff, J. W., & Suurmeijer, T. P. (2011). Participation of the elderly after vision loss. Disability and Rehabilitation, 33, 63-72. Doi:/10.3109/09638288.2010.488711 Berger, S., McAteer, J., Schreier, K., & Kaldenberg, J. (2013). Occupational therapy interventions to improve leisure and social participation for older adults with low vision: A systemic review. The American Journal of Occupational Therapy, 67, 303-311. Brown, J. C., Goldstein, J. E., Chan, T. L., Massof, R., & Famulu, P. (2014). Characterizing functional complaints in patients seeking outpatient low-vision services in the United States. American Academy of Ophthalmology, 121, 1655-1662. Blaylock, S. (2018). Falls prevention intervention modified for older adults with LV: A pilot study. American Journal of Occupational Therapy, 72, 280-285. Baylock, S., Barstow, B., Vogtle, L. K., Bennett, D. K. (2015). Understanding the occupational performance experiences of individuals with low vision. British Journal of Occupational Therapy, 78(7), 412-421. Blaylock, S. E., & Vogtle, L. K. (2017). Falls prevention interventions for older adults with low vision: A scoping review. Canadian Journal of Occupational Therapy, 84(3), 139-147. doi:10.1177/0008417417711460 Casteel, C., Jones, J., Gildner, P., Bowling, J. M., & Blalock, J. (2018). Falls risks and prevention behaviors among community-dwelling homebound and non-homebound older adults. Journal of Applied Gerontology, 37(9), 1085-1106. doi:10.1177/0733464816672043 Cole, M.B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 20 approach. Thorofare, NJ: SLACK, Inc. Crews, J., Chou, C. F., Stevens, J. A., & Saaddine, J. B. (2016). Falls among persons aged over 65 years with and without severe vision impairment United States, 2014. Morbidity and Mortality Weekly Report, 65(17), 433-437. Dumas, M. Carmody, V., Black, J., & Blake, M. (2018). Readability and quality of patient education materials targeted toward vulnerable populations. American Journal of Occupational Therapy, 72. doi:10.5014/ajot.2018.72S1-PO6015 Girdler, S., Packer, T., & Boldy, D. (2008). The impact of age-related vision loss. OTJR: Occupation, Participation and Health, 28, 110-120. Jaffee, E. G., Arora, V. M., Matthiesen, M. I., Hariprasad, S. M., Meltzer, D. O., & Press, V. Postdischarge falls and readmissions: Associations with insufficient vision and low health literacy among hospitalized seniors. Journal of Health Communication, 21, 135-140. doi:10.1080/10810730.2016.1179371 Johnson, K. J., & Mutchler, J. E. (2014). The emergence of a positive gerontology: From disengagement to social involvement. The Gerontologist, 54, 93-100. Liu, C. J., Brost, M. A., Horton, V. E., Kenyon, S. B., & Mears, K. E. (2013). Occupational therapy interventions to improve performance of daily activities at home for older adults with low vision: A systematic review. American Journal of Occupational Therapy, 67, 279-287. Doi:/10.5014/ajot.2013.005512 Metcalf, L. & Benn, S. (2012). Leadership for sustainability: An evolution of leadership ability. Journal of Business Ethics, 112(3), 369-384. Mohler, A. J., Meufeld, P., Perlmutter, M. S. (2015). Factors affecting readiness for low vision interventions in older adults. American Journal of Occupational Therapy, 69. ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 21 Niihata, K., Fukuma, S., Hiratsuka, Y., Ono, K., Yamada, M., Sekiguchi, M., et al. (2018). Association between vision-specific quality of life and falls in community-dwelling older adults: LOHAS. PLoS ONE, 13(4), 1-11. doi:10.1271/journal.pone.0195806 Richardson, J. et al. (2014). Self-management interventions for chronic disease: A systematic scoping review. Clinical Rehabilitation, 28, 1067-1077. doi:/10.1177/0269215514532478 Sanders, M. (2018). Feasibility study on the impact of home lighting on visual performance and quality of life for older adults with low vision. American Journal of Occupational Therapy, 72. doi:10.5014/ajot.2018.72S1-PO1008 Schultz, S. & Schkade, J. K. (1992). Occupational adaptation: Toward a holistic approach for contemporary practice, part 2. American Journal of Occupational Therapy, 46, 917-925. Doi:10.5014/ajot.46.10.917 Smallfield, S., Clem, K., and Myers, A. (2013). Occupational therapy interventions to improve the reading ability of older adults with low vision: A systemic review. American Journal of Occupational Therapy, 67, 288-295. Smallfield, S., Berger, S., Hillman, B., Saltzgaber, P., Giger, J., & Kaldenberg., J. (2017). Living with low vision: Strategies supporting daily activity. Occupational Therapy in Health Care, 31(4), 312-328. Smith. D. L., & Gutman, S. A. (2011). Health literacy in occupational therapy practice and research. American Journal of Occupational Therapy, 65, 367-369. doi:10.5014/ajot.2011.002139 Varma, R. Varjaranant, T. S., Burkemper, B., Wu, S., Torres, M., Hsu, C., et al. (2016). Visual impairment and blindness in adults in the United States. JAMA Ophthalmology, 134(7), 802-809. ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 22 Walsh, W. E. (2018). Investigating public perception of occupational therapy: An environmental scan of three media outlets. American Journal of Occupational Therapy, 72, 1-10. Doi:10.5014/ajot.2018.024513 Warren, M., DeCarlo, D., & Dreer, L E. (2016). Health literacy in older adults with and without low vision. American Journal of Occupational Therapy, 70, 1-7. Doi:10.5014/ajot.2016.017400 ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 23 Appendix A Results of Needs Assessment 1. Please list your job title and population you serve: (3 responses) Therapist 1: OTR vision program, IP and OP Therapist 2: Vision program facilitator, adults with vision deficits Therapist 3: Occupational Therapist, pediatric neuro and developmental 2. How often do you provide any type of resource to your patients/patients family? (3 responses): I do for every patient (1) Often (2) Sometimes (0) Never (0) 3. If you do, which type of resource do you provide the most? Feel free to answer more than resource if used. (3 responses) Home exercise program (3) Diagnosis information sheet (0) Practitioner information (2) Home modifications and accommodations (1) 4. Which type of resource do you provide the least? (3 responses) Home exercise program (0) Diagnosis information sheet (3) Practitioner information (0) Home modifications/compensatory strategies (0) 5. Are there resources you wish you had on hand? If so, list and explain: (3 responses) Therapist 1: diagnosis info sheets would be nice Therapist 2: low vision services in the area and around the state Therapist 3: School accommodations checklist, tend to make up individual ones each time, sensory integration strategies for attention and focus (home and school), primitive reflex integration explanation (currently use handouts for testing and integration, but has little explanation), font size checker in Arial, Times New Roman, Calibri 6. Are there resources you wish to modify? If so, list and explain: (3 responses) Therapist 1: excel date entry sheets, new photos for common item board for aphasic patients Therapist 2: the handouts all patients receive, modify for large print Therapist 3: Core strength activities, different saccadic home programs sheets that include high frequency words 7. Are the resources available health literate for all populations? (3 responses) Yes (0) No (1) Maybe (1) Other: Therapist 1: I feel like the ones we typically use are, but perhaps rarely used ones arent. Im thinking about the Indiana library books on tape handout as questionable. 8. Do you believe there is a need to advocate for vision occupational therapy services outside of RHI? If so please explain where and why: (3 responses) ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS 24 Appendix A (Continued) Therapist 1: Yes, many who could benefit are not referred. Do we send info to local doctors to increase awareness? Therapist 2: Yes, there is a lack of understanding the services we provide and the benefits Therapist 3: Yes, no need to be territorial when the need is there is. ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS Appendix B Outcome Measure 1= not satisfied at all, 5= completely satisfied 1. Please rate your satisfaction with resources related to the Indianapolis area. 1 2 3 4 5 2. Please rate your satisfaction with the fall prevention resource. 1 2 3 4 5 3. Please rate your satisfaction with the home evaluation record sheet. 1 2 3 4 5 4. Please rate your satisfaction with the low vision resources. 1 2 3 4 5 5. Please rate your satisfaction with the inpatient binder system for low vision population. 1 2 3 4 5 6. Please rate your satisfaction with the location and organization of the resources. 1 2 3 4 5 25 ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS Appendix C Example of Indianapolis Vision Resource 26 ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS Appendix C (Continued) 27 ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS Appendix D Example of Low Vision Resource 28 ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS Appendix D (Continued) 29 ROLE OF OCCUPATIONAL THERAPY FOR PATIENTS WITH VISUAL DEFICITS Appendix D (Continued) 30  ...

... Running head: AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 1 An Occupational Perspective for Addressing Fall Prevention to Enhance Successful Transitions from a Skilled Nursing Facility to Home Hannah Cesinger May, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Beth Ann Walker, PhD, MS, OTR AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 2 An Occupational Perspective for Addressing Fall Prevention to Enhance Successful Transitions from a Skilled Nursing Facility to Home Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Hannah Cesinger OTD, OTS Approved by: Beth Ann Walker, PhD, MS, OTR Faculty Capstone Advisor 4-13-2019 Julie Bednarski, OTD, MHS, OTR Doctoral Capstone Coordinator 4-13-2019 Accepted on this date by the Chair of the School of Occupational Therapy: Kate DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy 4-13-2019 AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 3 Abstract Background: The Fall Observation Report at Spring Hill Village (SHV) in 2018 showed that there were 222 falls reported. After discussing with all therapy staff, they stated there are no fall prevention or simple home modification and adaptation handouts that are readily available to give residents to increase overall safety. The My Safe and Sound Plan (MSSP) serves as a comprehensive guide for older adults to understand personal and environmental factors that may need to be modified or adapted within their lives to successfully and safely age in place. Purpose: To educate staff therapists on multifactorial fall prevention protocols to reduce older adults risk for falls when discharging home from a skilled nursing facility. Staff therapists were educated on ways to incorporate the MSSP into practice during a group or individual intervention session. Design: An educational in-service was given to staff therapists at Springhill Village (SHV) to develop a deeper understanding of multifactorial fall prevention and the MSSP. A six question 5point Likert scale pre/post survey questionnaire was used to collect data to determine educational growth from the educational in-service. Findings: Staff therapists showed an increased understanding on multifactorial fall prevention and developed a deeper understanding of the MSSP as a result of the educational in-service presentation. Conclusion: The MSSP provides an effective format to help residents understand the occupational nature for addressing fall prevention. Occupational therapists have the skills needed to provide education on multifactorial fall prevention programs and the MSSP to decrease shortterm residents risk for falls once discharged from a skilled nursing facility. 4 AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION Acknowledgements: I would like to thank my mother, Beth McGinty, Springhill Village Staff, and Sandy Hendrich, my doctoral capstone site mentor for all their contributions and to editing my paper throughout the process. AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 5 Falls are becoming a serious public health concern for older adults within skilled nursing facilities and the home (Florence, Bergen, Atherly, Burns, Stevens, & Drake, 2018; Vlaeyen et al., 2016). Fall-induced injuries are the most common cause of decreased functional activity, disability, cumulative trauma, and even death in the older adult population (Pynoos, Steinman, Nguyen, & Bressette, 2012). Falls are highly prevalent in older adults, which increases their vulnerability to trauma (Peterson & Clemson, 2008). ISHN (2017) provides evidence showing over seventy five percent of residents within a SNF fall on an annual basis. The Fall Observation Report at Spring Hill Village (SHV) in 2018 showed that there were 222 falls reported. Out of those 222, the report showed 110 residents fell somewhere in the bedroom, while 40 fell out of bed. The report also showed many older adults falling in the bathroom, falling during a transfer, sliding out of their wheelchair due to poor positioning, or falling in the dining room or hallway. According to the Centers for Disease Control and Prevention (CDC), one out of four individuals over the age of sixty-five fall each year and it is estimated that only half of those individuals report the incident to their primary care physician (Center of Disease & Prevention, 2018b). Unfortunately, the rate of annual falls is on the rise due to aging Baby Boomers (Florence et al., 2018) and it is anticipated that seven falls will occur every hour in 2030, many which result in death (CDC, 2018b). As a normal consequence of aging, individuals become more susceptible to risk factors related to falls (Bergen, Stevens, & Burns, 2016). Known risk factors for falls include lower body weakness, impaired balance, vision deficits, impaired cognition, polypharmacy (taking multiple medications), not actively exercising, and living within an unsafe home environment (Ballinger & Brooks, 2014; Kamei et al., 2015; Phalen, Aerts, Dowler, Eckstrom, & Casey, 2016; Bergen et al., 2016). According to the CDC (2018c), almost all falls in a SNF are a result of an environmental hazard, such as diminished lighting, slippery AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 6 flooring, and incorrect bed heights. Out of all 222 falls over the course of 2018 at SHV, only 3 resulted in an injury of a hip fracture, head injury, or red welt on their back. Fall injuries have shown to lead to loss of function, disability, and fear of falling, which further leads to depression and social isolation (Visschedijk et al., 2015; Bergen et al., 2016). Falls inflict a substantial economic and social burden on the individual, their families, health care professionals, and the economy (Sherrington et al., 2017). Older adults are falling, and it is resulting in substantial medical costs (Center of Disease & Prevention, 2018a). Falls in the older adults are among the top twenty most expensive medical conditions (Florence et al., 2018). Costs associated with falls within the United States in 2015 was over 50 billion dollars with Medicare paying approximately $28.9 billion, Medicaid $8.7 billion, and private insurances $12 billion (Florence et al., 2018; CDC, 2018a). Nonfatal falls within the home and skilled nursing facilities may result in broken bones and the need of emergency surgeries, which then lead to increased cost for hospitalizations and rehabilitation (CDC, 2018a). Not only is it important to understand the costs associated with falls, but also the indignity and devalued identify around a fall (Ballinger & Brooks, 2014). Many older adults are not reporting a fall due to believing their independence will be taken away from them. Falls not only have physical effects on the older adults, but also psychological effects. The fear of falling affects more than 50% of older adults and may have a negative impact on mental and physical status (CDC, 2018a; Visschedijk, Caljouw, Bakkers, van Balen, & Achterberg, 2015). Fear can be disabling and lead to feelings of isolation and depression (Vlaeyen et al., 2016). Fear of falling has led many older adults to avoid participating in certain daily activities, which can lead to overall weakness, and in turn, increase their risk for falls (Visschedijk et al., 2015; Bergen et al., 2016). The older adult population, who are aging in place or in a skilled nursing facility often AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 7 lack understanding of the impact a fall can have on their life if they are not taking preventative measures (Visschedijk et al., 2015). Intrinsic Factors Intrinsic factors are attributed to polypharmacy, having decreased balance, impaired vision, and having difficulties with higher level cognition. Kamei et al., (2015) provides evidence showing a higher risk for older adults who are consuming four or more medications (polypharmacy) and/or benzodiazepines. Polypharmacy can have negative effects on the body, such as impaired visual acuity, postural hypotension, balance deficits, and feeling dizzy; all of which increase ones risk for falls (Kamei et al., 2015; Phalen et al., 2016). Side effects to medication are not the only reason older adults are falling. Evidence shows older adults need to have regular chart reviews by physicians to flag high-risk medications, assess acute or chronic medical conditions, neurological problems, cardiac status, vision deficits, and joint dysfunction (Peterson & Clemson, 2008; Phalen et al., 2016). As one begins to age, so does their body; specifically, their bones, muscles, eyes, and mind. A study performed by Bergen, Stevens, & Burns (2016) showed that reduced upper and lower extremity muscle mass and strength have effects on the older adult populations functional mobility and balance by restricting their ability to perform daily activities and increasing their risk for falls. Phalen et al., (2016) provides evidence showing individuals with decreased cognition, such as memory loss, bipolar disorder, depression, or dysthymia are at a higher risk for falls. Older adults who have recently been diagnosed with cataracts, diabetic retinopathy, glaucoma, or overall poor vision are also at a higher risk for falls (Phalen et al., 2016). Extrinsic Factors AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 8 The home and immediate environment are common locations for falls in older adults. Falls are most common in the bathroom, kitchen, bedroom, and stairwell (Pynoos et al., 2012). A study by Peterson & Clemson (2008) found the most common hazards for falls within the home and skilled nursing facilities are related to having obstacles in a pathway, slippery surfaces, and poor lighting. Toilet and shower transfers are the most common causes of falls in the bathroom, due to inability to stand from lower surface, slipping on wet floor, or sliding/tripping on throw rugs (Pynoos et al., 2012). A study by Kamei et al., (2015) identified poor lighting in hallways/bathroom, clutter on the floor, throw rugs, wearing improper footwear, lack of education in proper use of durable medical equipment, and having cords across the floor as environmental hazards that had caused older adults to fall. Pynoos et al., (2012) states that uneven surfaces, loose, deep, or worn carpets, poorly arranged furniture, poorly designed bathrooms, staircases without railing, and pets were major tripping hazards within the home. If these environmental hazards are not addressed with the elderly population, the likelihood of falls will continue to increase. Occupational Therapy The profession of occupational therapy uses occupations to improve ones independence within their daily roles, routines, and habits of everyday life (AOTA, 2014). Occupational therapists use their knowledge to not only understand the person, but also the complications within their environment to support optimal functioning (AOTA, 2014). Occupational therapists focus on the preservation of occupational identity after the onset of a disability, disease, or disorder by having a deep understanding of compensatory strategies, energy conservation techniques, and modifications throughout daily life. (AOTA, 2014). Occupational therapists are trained to assess and provide interventions which aim to decrease falls in multiple areas of AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 9 practice, especially within the home (Roberts & Robinson, 2014). Through understanding an individuals roles and routines, occupational therapists are able to recognize falls risks throughout daily activities within one's living environment and provide appropriate safety education (Ballinger & Brooks, 2014). It is important to dive deeper into these risk factors to have a better understanding of preventative measures that can be taken to facilitate fall prevention and education for the population to then be able to continue to age in place by promoting overall well-being and safety throughout their daily life. Theoretical Framework The Person-Environment-Occupation (PEO) model serves as a framework to guide clinical reasoning of occupational therapists in the analysis and understanding of their clients occupational performance which is shaped by the interaction between the person, environment, and occupation. The PEO model promotes a means to deliver occupational therapy services regarding fall prevention by understanding the process and the content within the model (Ballinger & Brooks, 2014). Every older adult has the right to age in place safely, by maintaining their health, wellness, and participation in daily activities, regardless of their ongoing health issues. The PEO model focuses on all aspects of the individual, including the person, environment, and occupations on a function-dysfunction continuum (Law et al., 1996). The person is related to the individuals attributes, such as their life roles, motivation, age, gender, socioeconomic status, and functional status (Law et al., 1996). The environment has an external focus on the context for occupational function-dysfunction (Law et al., 1996). This aspect provides a unique perspective on the individual's environmental circumstances, such as materialistic disadvantages, and inability to safely live within their home due to decreased cognition, vision, and poor balance (Peterson & Clemson, 2008). These individuals need to be AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 10 educated on fall risk preventions/interventions that can be implemented within their home, through the use of a home assessment, to minimize the environmental barriers of aging in place (Peterson & Clemson, 2008). Occupations are defined as meaningful tasks and activities one engages in throughout their lifespan (Law et al., 1996). By providing basic fall prevention education, demonstration/education on durable medical equipment, and implementing home modifications, older adults could be maximizing their independence with daily occupations (Pynoos et al., 2012). These interventions aim to improve occupations of self-care activities, meal preparation, home maintenance, household chores, caring for pets, or engaging in hobbies (American Occupational Therapy Association, 2014). This model facilitates how an occupational therapist can implement home safety, within their home, to allow clients to age in place while decreasing their risk for falls (Ballinger & Brooks, 2014). The PEO model has been used to guide the screening and evaluation process for various practice settings within the realm of occupational therapy. The process behind the PEO model is finding an equal fit between the person, environment, and occupations. This process will continue to change and be modified throughout one's lifespan (Strong et al., 1999). Throughout the screening and evaluation process, an occupational therapist will identify strengths and weaknesses throughout occupational performance by assessing performance components, understanding environmental conditions, and specific occupations, activities, or tasks the individual engages in on a daily basis (Strong et al., 1999). By bringing these three components together, one can see a transactional framework develop to implement an intervention plan to enhance the function-dysfunction continuum through occupational performance (Strong et al., 1999). Occupational Therapy and Fall Prevention AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 11 By looking through the lens of the PEO model, an occupational therapist can address fall prevention by focusing on education, identifying potential environmental hazards, adapting the home environment through the use of home modifications, offering social support, and promoting exercise and physical activity in a meaningful way. Occupational therapists have an important role in multifactorial approaches by incorporating these key aspects into the older adults treasured daily activities and occupations, thus encouraging meaningful life roles (Ballinger & Brooks, 2014). Occupational therapists not only play a key role in fall prevention, but also in continuing to examine strategies to improve the older adults overall self-confidence by planning how and when they will implement these procedures within their daily life (Ballinger & Brooks, 2014). Person Factors. Occupational therapists have an important role in address fall prevention through the use of establishing safety in ones roles, routines, and habits of everyday life. As occupational therapists, fall education needs to be provided in a client-centered manner, be occupation driven, focused on finding motivational links, and aiming to reduce concerns about falls, and improving the older adults overall self-efficacy (Peterson & Clemson, 2008). Occupational therapists need to continue to provide social support to the elderly population by providing a positive light for improving falls self-efficacy, which is essentially the degree of confidence one has in completing daily activities without falling (Ballinger & Brooks, 2014). Environmental Hazards. Occupational therapists are trained to understand the positive and negative aspects of one's environment to support optimal living. Occupational therapists use a compensatory strategy aimed at reducing barriers in the environment, while improving occupational performance for older adults with functional limitations (Stark et al., 2017). The prevalence of home modifications within the home and skilled nursing facility remains low, and AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 12 occupational therapists have an important role in meeting this need (Stark et al., 2015; ColnEmeric et al., 2017). Occupational therapists should excel in this area because their core foundation focuses on identifying underlying client factors, assessing their environment, and making recommendations and/or adaptations that are individualized to the elderly population (Stark et al., 2015). Within a skilled nursing facility, occupational therapists can assess and suggest removing environmental barriers, such as removing clutter in the hallways, increasing the light at the top and bottom of stairwells, and decreasing occurrences of stepping on wet or uneven surfaces (Peterson & Clemson, 2008; Coln-Emeric et al., 2017). Home adaptations and environmental adaptations can be targeted to suggesting non-slick shoes, removing throw rugs, and being properly educated on transfer techniques on raised toilet seats and tub transfer benches to ensure safety within the home and skilled nursing facility (Kamei et al., 2015; Coln-Emeric et al., 2017). Occupations. Occupational therapists play an important role in focusing improving safety through the use of desired occupations. To improve strength and activity tolerance, older adults need to feel a sense of control, empowerment, and choice when picking the exercises they participate in (Peterson & Clemson, 2008). By allowing opportunity and control, older adults are more likely to adhere to the exercise program by allowing it to become part of their routine (Ballinger & Brooks, 2008). Within a skilled nursing facility, implementing a toileting schedule decreased falls by helping the resident prior to them helping themselves (Colon-Emeric et al., 2017). With that being said, occupational therapists need to find activities or an exercise an regime that motivates and interests the older adult, therefore improving adherence and compliance, which in turn, will then lead to a reduction in falls within the home and skilled nursing facility. AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 13 Occupational Therapy in a SNF In the overall healing process, older adults usually go from hospital settings to a skilled nursing facility, then to home health care services. The latest trend is for SNFs to have shorter length of stays due to insurance companies dictating when skilled therapy services are no longer needed for managed insurances. SNFs are able to provide 24/7 nursing care for distribution of medications and have certified nursing aids (CNAs) who are able to provide around the clock assistance with daily self-care tasks (AOTA, 2018a). The person, in a skilled nursing facility, focuses on establishing roles and routines that are meaningful to the older adult (AOTA, 2018a; AOTA, 2018b). The discharge environment however by listening to the residents word of mouth and taking their recommendations (AOTA, 2018a). SNF therapists are able to make recommendations for fall prevention, home safety, and home modifications, but happens vaguely. The occupations in a SNF focus on ADLs, IADLs, the use of adaptive equipment and durable medical equipment uses (AOTA, 2018a). Transitioning to Home Health Occupational Therapy Older adults qualify for home health services under their Medicare A benefits after an extended stay at a skilled nursing facility. The biggest transition is that home health care provides intermittent care between nursing care and therapists (AOTA, 2018b). Within a home health setting, occupational therapists are able to assist in the supervision and training of the nursing aide to ensure the just right challenge for the older adult to maximize the older adults independence on a continuum of care (AOTA, 2018b). The person, in the home health setting focuses on establishing roles and routines that are meaningful to the older adult (AOTA, 2018a; AOTA, 2018b). Home health has an added role in this area of practice by providing assistance on compensatory reminders for adhering to medication management (AOTA, 2018b). The AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 14 environment however is different by home health actually actually being able to see the older adult current function in their home living environment (AOTA, 2018b). Home health care services are able to make recommendations for fall prevention, home safety, and home modifications. Home health is able to have a special role in seeing the entire process, due to physically being the residents home environment (AOTA, 2018a; AOTA, 2018b). The occupations in home health care settings focus on ADLs, IADLs, the use of adaptive equipment, home safety recommendations, home exercise programs, and educating on durable medical equipment uses (AOTA, 2018a; AOTA, 2018b). Multifactorial Interventions for Falls Multifactorial interventions incorporate interprofessional approaches that are aimed at identifying multiple risk factors to reduce falls (Isaranuwatchai, Perdrizet, Markle-Reid, & Hoch, 2017). Multifactorial fall prevention approaches focus on visual and cognitive assessments, self-care training, balance training, environmental modifications, exercise, and safety education with daily routines and activities (Roberts & Robinson, 2015, p. 255). Studies have shown that multifactorial interventions for falls are cost-effective and could lead to substantial reductions in healthcare spending (Isaranuwatchai et al., 2017; Florence et al., 2018). Within a skilled nursing facility, good communication, having readily accessible equipment, and supportive staff improved adherence and residents response to multifactorial interventions (Vlaeyen et al., 2016; Colon-Emeric et al., 2017). Fall Education/Social Support. Relationships with family, friends, and health care professionals affect the overall adherence and retention to fall prevention education (Kwan & Straus, 2014). A study by Kamei et al., (2015) suggest that having an interdisciplinary approach has been shown to improve fall prevention by including a physician, nutritionist, nurse, occupational therapist, physical therapist, and staff educator has a greater reduction for falls AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 15 within the home. Fall prevention education needs to be simple, easy to understand, and provide fall prevention education in a positive and empowering way by understanding the older adults goals and perspectives (Roberts & Robinson, 2015; Sherrington et al., 2017). By having a collaborative approach, decreasing staffing issues, carryover between shifts, and good communication showed a decrease in falls within a skilled nursing facility (Vlaeyen et al., 2016). Environmental Adaptations & Modifications. Environmental modification interventions have demonstrated the ability to reduce falls and improve function in older adults (Stark et al., 2015). Environmental modifications include the use of adaptive equipment, such as grab bars or railing on stairs, raised toilet seats, to changes within one's physical environment by offering advice for alternative ways of carrying out activities of daily living (Ballinger & Brooks, 2008; Colon-Emeric et al., 2017 ). These modifications help compensate for balance, visual, and cognitive impairments, allowing the older adult to age in place safely (Stark et al., 2015; Ballinger & Brooks, 2008). A study by Kamei et al., (2015) showed the most common recommended home modifications were raising the toilet seat, using a rollator walker instead of wall walking and installing grab bars or rails in the bathroom. This study showed older adults who implemented at least one of the recommended home modifications had a substantial decrease in the rate of falls over a year (Kamei et al., 2015). Exercise. Multifactorial fall prevention programs utilize exercise programs to improve strength, balance, and coordination in the elderly population (Peterson & Clemson, 2008). A study by Kwan & Straus (2014) showed exercise programs that focused on Tai-Chi, strength/resistance training, walking groups, ankle cuff weights, or any type of physical activity had positive improvements for decreasing falls within the home. Evidence shows engaging in exercise interventions for 3 hours a week, with a focus on Tai-Chi, balance training, transfers, AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 16 strengthening, and walking that falls in the home have reduced by the rate of 39% (Sherrington et al., 2017). Accessing Resources Within a skilled nursing facility, residents are closely connected with their social workers, who ensure a safe and proper discharge location. Social workers are able to set up referrals to community based settings, such as Area 7 Agency on Aging. Within the Terre Haute area, Area 7 Agency on Aging is a local community resource for older adults to have access to public transportation via bus services, nutritional programs (meals on wheels), and access to health and wellness programs (Aging & Disabled Services Division, 2019). When focusing on the person, environment, and occupation, one can see many opportunities within this area of practice. For the person, occupational therapists can help older adults establish roles and new routines for developing and understanding the bus system. The environment focuses on implementing change to ensure safety by providing assistance via Adult Day Services when needed. The occupations have a focus on decreasing workload of meal preparation through the use of meals on wheels, which ensures a well-balanced diet. Area 7 Agency on Aging has a focus on improving quality of life, reducing disabilities, and improving mental health by enhancing the capabilities the older adult can perform and engage in, which is the foundation of occupational therapy (ADSD, 2019). Interdisciplinary Approach An article by Eckstrom et al., (2016) states an interdisciplinary approach has the greatest results with fall prevention within a skilled nursing facility. Fall prevention can be addressed in many different ways. Physical therapists generally focus on decreasing gait difficulties, improving balance, and decreasing postural hypotension (Eckstrom et al., 2016). Occupational AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 17 therapists focus on upper extremity strengthening, safety with functional activities, minimizing home risks, and decreasing fall hazards (Eckstrom et al., 2016). By looking through the lenses of the PEO, occupational therapists in a skilled nursing facility have an important role in addressing intrinsic and extrinsic factors that correspond to addressing fall prevention and home safety (AOTA, 2018a). For short term residents, occupational therapists should be providing education on potential home modification recommendations and safety equipment to promote safe functioning and reducing barriers upon discharge (AOTA, 2018a). For long-term residents, occupational therapists should have a collaborative approach with other SNF staff for modifying the environment and adapting self-care tasks to improve safety within their rooms (AOTA, 2018a). Screening & Evaluation Needs Assessment Falls Within a Skilled Nursing Facility. Springhill Village is a 99 bed, skilled nursing facility (SNF) located in Terre Haute, Indiana. After discussing with the nursing unit managers and rehab manager, a need developed to address falls within their SNF. Industrial Safety & Hygiene News (ISHN) (2017) reports the average falls per 100 bed SNF is between 100-200 falls per year. Results of a Fall Observation Report showed that Springhill Village had 222 falls during the year of 2018. The facility had 109 different individuals fall over the course of the year, while the highest number of falls per person was falling 11 times. Discharging Home From a Skilled Nursing Facility. After informal observations with physical therapists, occupational therapists, and speech language pathologists, a need developed from the lack of addressing fall prevention and home safety throughout the discharge process. During discharges, the physical therapists addressed caregiver education, in regard to safety AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 18 during transfers and provided residents with a home exercise program to continue lower extremity exercises until home health services began. One of the physical therapists stated, I usually let home health address safety, in relation to fall prevention and home adaptations. At the facility during discharges, occupational therapists addressed safety concerns with toilet and tub transfers, and re-emphasized the importance of DME, while the speech therapist addressed general safety within the home, in relation to being able to call 911, medication management, and educating caregivers on cognitive barriers. After discussing with all therapy staff, they stated there are no fall prevention or simple home modification and adaptation handouts that are readily available to give residents to increase overall safety. Instrumentation After diving into the evidence-based research, statistics, observations, and having discussions with staff members, there was a need to understand the collective role of the facility in addressing falls prevention and facilitating successful transition for residents who will return home following their rehab stay. The PEO model was used as a guide throughout the formation of the survey with emphasis on the person, environment, and occupations affected from falls. An open-ended anonymous six question survey was given to the physical therapists, occupational therapists, speech language pathologists, the rehab service manager, nursing unit managers, the director of nursing, the assistant director of nursing, the executive director, social services, and multiple CNAs. Evidence from Eckstrom et al., (2016) emphasized the importance of educating the interdisciplinary team on fall prevention to enhance the collaborative approach. A collaborative approach between health care professionals affects the overall adherence and retention to fall prevention education and safety for older adults (Kwan & Straus, 2014). Enhanced communication and education provides cohesion and safety for residents when a solid AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 19 understanding and foundation of roles are identified between staff members (Coln-Emeric et al., 2017). The six questions on the survey focused on staff member perceptions of: how falls could be prevented, what the facility is already doing to address falls, the role of the occupational therapist in addressing falls, potential challenges for residents after discharge, how the facility currently prepares residents for the transition to home, and what the facility could do to improve the transition to home (See Appendix A). By gathering a deeper understanding into these deficits within the facility, we better enhance fall prevention education by asking questions that target a deeper, personal response. Evidence shows as older adults are aging, they are taking multiple medications, having decreased balance, cognitive deficits, vision difficulties, and living within unsafe environments (Ballinger & Brooks, 2014; Kamei et al., 2015; Phalen et al., 2016). As older adults continue to age, so does the risk for falls; which is why it important to ensure the facility they are living within is taking precautionary measures to address and prevent falls (CDC, 2018c). If staff are not educated or know precautionary interventions for fall education, the elderly will continue to be the ones impacted (Visschedijk et al., 2015). Eighteen anonymous open-ended surveys were collected. Information provided from surveys were transcribed and categorized into common overarching themes with an emphasis on the person, environment, and occupation to support the occupation-based model of the PEO model by finding the function-dysfunction continuum. Results of the Needs Assessment Respondents of the needs assessment included eighteen full-time health care professionals at SHV: Executive Director, Director of Nursing, Assistant Director of Nursing, Director of Therapy, MDS Coordinator, Activities Director, Social Worker, Occupational Therapists (2), 20 AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION Physical Therapists (2), Speech Language Pathologists, Registered Nurses (2), Licensed Practical Nursings, and Certified Nursing Assistants (3). All of the participants were female. The age of the participants varied from 25 - 60 years old. . Springhill Village is aware of the falls that take place and are passionate about ensuring their residents safety and addressing areas of improvement. The staff at Springhill Village believe falls could be prevented by having a quicker response to call lights, implementing the correct environment for the resident, closely monitoring the patient with a fall history, and properly educating the staff on the preventative measures needing to be implemented. The environment of the facility needs to ensure the patient is wearing proper non-skid socks/safe footwear, setting the bed at the correct level, removing clutter from doorways, and ensuring the floor is dry. For nurses to closely monitor a resident would require more supervision from the staff, not allowing the resident to be alone in their room, and also monitoring their medication changes. For education of staff members, many participants stated educating staff on safety awareness training, balance and strengthening programs, and properly training CNAs on proper positioning in bed and wheelchairs is needed. A common suggestion from participants was implementing a restorative program. The staff at Springhill Village are implementing room/environment modifications, referring residents to skilled therapy services, teaching staff to check on residents more often, and completing (interdisciplinary team) IDT assessments to investigate the falls by conducting a root cause analysis to address falls. Many room and environment modifications mentioned, included: centering resident in bed, ensure wheelchair is locked prior to transfer, offer toileting every 1-2 hours, place mats around bed, lower the bed position, wear non-slip footwear, remove clutter, and notify staff if the floor is wet. When a resident has fallen, the nursing staff is able to AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 21 write a referral to therapy, so they can focus on strengthening for transfers, implement fall prevention by finding the root cause, and improve upper body strengthening. The participants believe the role of an occupational therapist is to address the underlying cause of the fall, focus on upper-body strengthening, proper wheelchair positioning, suggest environmental modification, educate staff and resident on safe transfer techniques, and to educate the patient, staff, and/or caregiver on proper safety with activities of daily living skills. Participants stated, occupational therapists have a key role in addressing and decreasing the risk for falls. Occupational therapists provide education on the use of call lights, safety during selfmanagement tasks, standing balance training, proper usage of adaptive equipment, and assistive devices to maximize their independence and safety when performing desired occupations. The staff at Springhill Village believe environmental changes to transition are the biggest challenges for older adults once they return home from a skilled nursing facility. These environmental changes consist of constantly having 24/7 care to being alone, having to do tasks on their own, remembering safety recommendations given, implementing home safety recommendations, having continued social support, and being non-compliant with education given. Some of the participants suggestions emphasized on home safety by removing throw rugs, removing clutter from aisle ways, and completing their activities of daily living safely with appropriate durable medical equipment needs. By implementing a safe living environment, the older adult not only lives safer but will begin to feel safer. The hardest challenge is patient noncompliance, in regard to fall prevention education. The participants believe Springhill Village does prepare residents for discharge by recommending home health therapy services, providing residential education before discharge, offering home evaluations/recommendations, and by having a care plan meetings to ensure all AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 22 family members are on board with discharge location, safety, and older adults abilities. By recommending home health therapy services, a social worker is able to set up the referral to allow the older adult to have a medical professional in their home within 48 hours once discharged from the skilled nursing facility. Another aspect the staff members feel they prepare residents well for, before discharge, is during functional transfers and mobility, such as car transfers, stair training, dynamic balance activities, safety training, and toilet/tub transfers. The discharge planner also has a short handout named Fall Prevention Self-Management Plan that is given and usually discussed to residents prior to discharging. Springhill Village staff members believe that the offering of home visits, home evaluations and recommendations are truly the most important stated items that help ease the older adults transitioning home after discharge. Lastly, the staff members at Springhill Village believe they could emphasize the importance of home assessments/visits and offer them more frequently. Staff members suggested planning them with residents after two weeks of being admitted, so recommendations could be in place prior to returning home. Many participants stated, We offer home evaluations, but very few older adults accept and allow us to complete them. The participants also suggested having a form for all disciplines of care to complete for caregiver/family member to understand patients current abilities, instead of nursing having to relay the message. Springhill Village participants felt that the CNA staff needed education on the importance of allowing the residents the time and independence to complete their activities of daily living on their own without assistance. One participant suggested placing a communication board in all the rooms, so other staff members have an idea of the residents independence levels on specific activities of daily living and functional transfers. AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 23 With the results of the needs assessment, the continued plan is to implement and educate the therapy and nursing staff on preventative measures to take, which in turn will decrease falls within the facility and after discharging home. Staff will also be educated on the My Safe and Sound Plan (MSSP) for staying falls-free. The MSSP addresses eight ways to improve older adults balance and lessen their risk for falls (Howard, 2018). The eight topics focus on changing your mind, managing your medicines, heart, and vision, understanding proper footwear/footcare, importance of Vitamin D and Calcium, exercises for fall prevention, and provides a home safety check (Howard, 2018). Evidence continues to suggest the more times older adults are educated about fall prevention, from many different healthcare professionals and settings, the higher the likelihood is that the older adult will begin to listen and understand (Kamei et al., 2015; Kwan & Straus, 2014). Implementation Prior to the educational in-service, the pre-survey was distributed to all eleven staff therapists with use of a Likert-scale format for the pre- & post-survey. Appendix B includes specific questions included on the pre-survey questionnaire. The educational in-service was given to enhance staff understanding on the purpose of the doctoral capstone project, recognize consequences of falls among older adults, understand the theoretical framework used to guide this project, identify recent trends related to falls at SHV, identify relevant outcomes based on the needs assessment, be introduced to the My Safe and Sound Plan (MSSP) and understand ways to incorporate the MSSP into practice. The in-service emphasized evidence-based research, practice, and knowledge related to fall prevention education and multifactorial fall prevention programs. The information was presented during a thirty-minute lunch-break and was provided via lecture format with a PowerPoint presentation for a visual-aide. AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 24 The purpose of my doctoral capstone experience was to focus on administration and program development in the area of fall prevention. Staff was informed that this capstone experience was an additional aspect of my education, following completion of two 12-week fieldwork rotations. Evidence was synthesized throughout the presentation to emphasize the importance of addressing falls and multifactorial fall prevention with the older adult population. The theoretical framework used to guide this project was the PEO model, which focused on finding an optimal fit to allow older adults to age in place safely while continuing to participate in activities of daily living that they find meaningful. Staff therapists were educated on the fall observation report and the results of the needs assessment. Education continued to focus on the MSSP by explaining the eight areas it encompasses and the disciplines that can address the information. The MSSP offers a fall risk screening, goes in depth on ways for older adults to change their mind, manage their medicines, heart, vision, foot care, and understanding the importance of Vitamin D/Calcium. The MSSP also has specific exercises to reduce the risk of fall prevention and provides a home safety check. Occupational therapists and physical therapists could address the MSSP. Occupational therapists have a key role in promoting a safe home environment by educating older adults on ways to live a falls-free life. Staff was educated on using an interdisciplinary approach to improve overall adherence and have the maximum results for longevity of the fall prevention program by all disciplines encouraging carry over. In addition to education on the MSSP, the staff was educated on goal setting options to incorporate fall prevention into practice. Examples were provided for sample intervention sessions showing how occupational therapists could incorporate the MSSP into practice. Staff therapists were also given sample documentation on how to write daily notes when incorporating the MSSP into resident care. AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 25 Following completion of the in-service, the eleven staff therapists completed the postsurvey, which included the same questions as the pre-survey. The post-survey also had additional questions to facilitate feedback for the presenter in regard to presentation and presentation style Appendix C provides specific questions included on the post-survey questionnaire. Leadership Skills Leadership was exemplified by gaining independence, building rapport with staff and residents, taking initiative, and always offering a helping hand within the environment of a skilled nursing facility. While planning for the implementation process, being a good communicator with many different disciplines was needed to provide collaboration, awareness, and honesty, in order to gather relevant information for effective implementation. A collaborative approach was used by completing the educational in-service for the interdisciplinary therapy team over general fall prevention measures and the MSSP. Leadership was demonstrated through conscientious efforts to be open and honest with the staff about fall prevention, being accountable, and leading by example throughout the implementation process. Having an open-door policy promoted an open-access friendly atmosphere for anyone to ask questions, signified a commitment to relationship building, and commitment to serving the therapy staff to improve their comfort level, participation, and knowledge within the realm of fall prevention in a skilled nursing facility. The educational in-service provided an emphasis on how the MSSP allows the therapy staff the ability to be creative and self-directed with the sections/area they want to address, in order to provide an interdisciplinary approach. Collaboration Between Staff Therapists Staff development was provided using an interdisciplinary collaborative approach, promoting efficacy, communication, interpersonal skills, and enhancing a deeper understanding AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 26 of knowledge for evidence-based fall prevention protocols. During the beginning stages of the implementation process, a need was shown to train the staff therapists by measuring and assessing their knowledge in the realm of fall prevention. Throughout the process, staff development was enhanced through direct communication and building interpersonal skills. The therapy staff at SHV have been practicing for many years and have a passion for continual learning by being eager to learn about the newest evidence-based research. The in-service facilitated a deeper understanding of evidence-based research in relation to falls, fall education, multifactorial fall prevention programs and the MSSP for fall prevention. The development of the staff was enhanced through interdisciplinary conversations about what the residents would benefit from. For example, if a resident was admitted for having a fall, one of the therapy disciplines could suggest to incorporate the MSSP into practice.. Staff cohesiveness would also be promoted through the use of providing examples on how to incorporate the MSSP within intervention plans, goal setting, and how to document fall prevention programs accurately. Discontinuation and Outcome Phase Project Outcomes Results of the Survey. The data from the pre- and post-surveys were imported into an excel spreadsheet. The scores were calculated and averaged according to pre and post question categories. Figure 1 shows the growth of knowledge and education provided during the inservice presentation. These results show the staff therapists gained exceptional confidence and knowledge within the realm of fall prevention education, multifactorial fall prevention programs, evidence-based research, and how to incorporate fall prevention interventions into practice. The last question on the post-survey asked how the participants would rate this educational in- AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 27 service. The participants responded unanimously with the maximum score of excellent. Figure 2 shows the average of scores for the Part B section within the post-survey. All staff strongly agree that the objectives were clearly defined, the objectives were met, the content was organized, the MSSP/PowerPoint was helpful, and the information that was presented would move the client forward. Figure 3 shows the average of scores for the Part C section within the post-survey. These results showed the staff therapists strongly agree the presenter was organized, wellprepared, knowledgeable about the topic area, and her presentation style was adequate. Figure 1. From a Likert-rating scale for the pre- and post-survey questionnaire, these results show the growth of knowledge and education provided during the in-service presentation. AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 28 Figure 2. From a Likert-rating scale for the Part B section of the post-survey, these results show the average of scores for the in-service presentation meeting the staff therapists expectations. Figure 3. From a Likert-rating scale for the Part C section of the post-survey, these results show the average of scores for the presenter being prepared and knowledgeable of the content area. Ongoing Process for Quality Improvement The ongoing process for quality improvement was ensured by using the most relevant and current evidence-based research. The development, organization, and implementation of the program was overseen and reviewed by experienced Sandra D. Hendrich, PT, DPT and Beth AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 29 Ann Walker, PhD, MS, OTR. The MSSP was developed by Brenda Howard, DHSc, OTR. The MSSP was piloted at many different skilled nursing facilities to show strong validity and reliability. Quality improvement has been made throughout the process by changing and modifying items as they have been brought up. To continue ensuring quality improvement, education will be provided to each therapist discussing the MSSP within a group setting by leading a group of four residents who will be returning home. This will allow the staff therapists to get comfortable with the MSSP in a group setting, but also having support from me during the beginning stages. To ensure sustainability, I provided staff therapists with examples of daily notes, progress notes, and goals when using the MSSP. Example goals were given to staff therapists, and the staff education focused on a collaborative, interdisciplinary approach to using the MSSP with residents. I also provided staff therapists with appropriate scenarios for when to incorporate the MSSP into practice during intervention or group therapy. In October of 2019, a new Patient Driven Perspective Model will be launched by Medicare. The new PDPM will allow multiple group therapy sessions to focus on the MSSP, while also being interdisciplinary. Groups could divide the eight different topics within the MSSP among occupational therapy, physical therapy, and speech therapy. Evidence continues to support the notion that increased education on fall prevention by different health care professionals increases adherence for older adults (Ballinger & Brooks, 2008). Societal Need The societal need is that older adults deserve the right to be educated on the extrinsic and intrinsic risk factors related to falls and fall prevention. Falls are happening and they are continuing to happen each and every day. As the older adult continues to age, the rate of falls AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 30 continues to increase (CDC, 2018b). Due to the aging process, the older adult begins to develop a higher susceptibility of risk factors related to falls (Bergen et al., 2016). These risk factors include developing lower body weakness, impaired balance, vision deficits, impaired cognition, polypharmacy, not actively exercising, and living within an unsafe environment (Ballinger & Brooks, 2014; Bergen et al., 2016; Kamei et al., 2015; Phalen et al., 2016). Older adults are in denial about their overall health. It takes repetitive education to allow them to understand the precautions that need to be implemented in order to age in place safely, while being fall-free. Evidence continues to show that staff therapists within skilled nursing facilities are not addressing these preventable risk factors related to falls within the older adult population (AOTA, 2018a). Staff therapists within skilled nursing facilities are relying on other practice settings, such as home health care, to address these risk factors. There is a societal need to increase the awareness of the skilled nursing facility therapists on the importance of multifactorial fall prevention programs within the older adult population, especially for those who are returning home after a short-term stay due to a new diagnosis or exacerbation of a illness. Occupational therapists have an important role in addressing multifactorial fall prevention interventions by incorporating these key aspects into the older adults treasured daily activities and occupations, which in turn will lead to encouragement in meaningful life roles (Ballinger & Brooks, 2014). Occupational therapists not only play a key role in fall prevention, but also the continuation of examining strategies needed to improve older adults overall selfconfidence by planning how and when they will implement these procedures within their daily life (Ballinger & Brooks, 2014). AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 31 Overall Learning The Doctoral Capstone Experience (DCE) allowed me to gain an abundance of knowledge and information to better serve others, once I become a practicing occupational therapist. Throughout my time at SHV, interactions have taken place with many different healthcare professionals, the interdisciplinary therapy team, and the key personnel who work closely beside the Director of Therapy in a SNF. Throughout my experience, I tried to incorporate many different learning styles by utilizing written, oral, nonverbal, and tangible learning experiences to emphasize the importance on being holistic when practicing occupational therapy. Written communication and interactions took place by providing staff therapists with a hard copy of the educational PowerPoint in-service presentation and a hard copy of the MSSP. The PowerPoint and MSSP were simple, clear to understand, gave information that could be understood and interpreted by individuals of all ages, socioeconomic status, and ethnicities. While implementing the MSSP with residents at SHV, they were provided physical copies of the MSSP for continued review along with written communication to take home. The MSSP was also used as a reference guide for the residents significant others and/or family members. This includes a home exercise program, new ideas to implement into one's lifestyle, and a home safety check for each room of the house. The MSSP had open-ended questions that allowed the residents to write down his or her own thoughts and ideas that they would begin implementing within their life. Other health care professionals, such as nursing staff and social work staff, were also exposed to the hard copy of the MSSP distributed to residents prior to discharge. AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 32 Oral communication and interactions took place during the PowerPoint educational inservice that educated staff therapists on current evidence-based literature, multifactorial fall prevention protocols, and how to implement the MSSP into practice. Throughout the PowerPoint presentation, actual cases within the facility were examples were used to improve staff therapists carry over when implementing the MSSP in goal setting, interventions, and providing example documentation to enhance communication and overall learning. At the end of the presentation, time was allotted for questions and feedback was given by staff therapists on improvements of in-service presentation. Implementation of the MSSP with residents took place within a group and individual-based setting depending on the needs of the resident. Extra time was taken to educate all staff therapists in a group setting to enhance their knowledge, confidence, and demonstration of how to lead a group session focused on the MSSP. Many staff therapists enjoyed this type of education, because within the group setting positive reinforcements were given when sharing their own stories. When providing verbal education on the MSSP, family members and significant others of current residents joined the session to learn about the MSSP. Nurses and social workers also benefited from listening during the group therapy session, as they stated they have a better understanding on what the MSSP entailed. As a facilitator of the MSSP, nonverbal communication had to be effective throughout implementation and presented in a happy and upbeat manner. Proper eye contact, positive body language, sitting with correct posture, and paying attention to our facial expressions while leading intervention sessions on the MSSP was important for facilitating a positive environment. All types of communication were utilized at SHV when implementing the MSSP with residents and staff therapists. Leadership and Advocacy AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 33 Throughout my time with this DCE experience, I gained a wealth of knowledge in relation to administrative duties within a skilled nursing facility and received a better to understanding of the process of program development. This DCE experience allowed me to step out of my comfort zone, become more assertive, become a leader, advocate for residents and the therapy staff, and also advocate for my profession. Leadership skills were shown by relaying information to the staff therapists that the Director of Therapy would have been doing, in relation to scheduling changes, resident changes, and interdisciplinary team (IDT) recommendations. Leadership was continually shown by discussing resident care and discharge planning with the nursing unit managers and social work team. While focused on the administrative duties, I was able to gain a better understanding of the day to day administration of a skilled nursing facility. I was able to assess what things they were doing to prevent falls, what things they were not doing to prevent falls, and then take that information to implement a program that increased the overall safety of the residents once they discharge home from a skilled nursing facility This, in turn, falls back on good administrative skills by ensuring all residents are safe to return back to their home environment. As occupational therapists ensuring residents have been properly educated on ways to reduce falls within their physical and immediate environments. As well as allowing residents to gain knowledge about changes within their bodies over time, along with exercises to continue gaining strength, balance, flexibility, and endurance needed to decrease older adults risk for falls within their home. Advocacy skills were demonstrated for the resident, the staff therapists, and for my profession while at this DCE. Advocacy was promoted for the resident by integrating the MSSP into practice, by taking the time to educate them on the hazards within their home, and also AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 34 allowing residents to understand the changes within their bodies as they have aged that contribute to an increased risk for falls. Advocacy was also shown by ensuring residents were receiving appropriate and proper care that was needed and deserved among this population. The Director of Therapy advocates for the residents by ensuring all IDT members are held accountable for their role in the residents care. This DCE allowed me to advocate for staff therapists by leading groups for them to observe on the MSSP, which will help them feel comfortable implementing and continuing the program once I am no longer there. This experience also allowed me to advocate for my profession. An occupational therapist in a skilled nursing facility or any other setting needs to address fall prevention. When I began, fall prevention was an area the therapists at SHV did not address in depth as much as they should in a skilled nursing facility, especially for individuals who have short-term stays and are returning home independently. After implementing the MSSP, I believe residents were thoroughly educated on how to safely return home, in order to substantially decrease their risk of falling. AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 35 References Aging & Disabled Services Division. (2019). Aging and disability resource center. Retrieved from http://www.westcentralin.com/area7.htm#ADR American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1 S48. http://dx.doi.org/10.5014/ajot.2014.682006. American Occupational Therapy Association (2018). Occupational therapys role in a skilled nursing facility- Fact sheet. Retrieved from https://www.aota.org/~/media/Corporate/Files/AboutOT/Professionals/WhatIsOT/RDP/F acts/ FactSheet_SkilledNursingFacilities.pdf (a) American Occupational Therapy Association (2018). Occupational therapys role in home health care- Fact sheet. Retrieved from https://www.aota.org/about-occupationaltherapy/professionals/pa/facts/home-health.aspx (b) Ballinger, C., & Brooks, C. (2014). An overview of best practice for falls prevention from an occupational therapy perspective. The Health Foundation, (1). Bergen, G., Stevens, M., & Burns, E. (2016). Falls and fall injuries among adults aged 65 years. Center of Disease Control & Prevention, 65(37), 993-998. Center of Disease Control and Prevention. (2018). Cost of falls among older adults. Retrieved from https://www.cdc.gov/homeandrecreationalsafety/falls/fallcost.html (a) Center of Disease Control and Prevention. (2018). Important facts about falls. Retrieved from https://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html (b) Center of Disease and Control. (2018). Home and recreational safety in a skilled nursing facility. Retrieved from https://www.cdc.gov/HomeandRecreationalSafety/Falls/nursing.html (c) AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 36 Coln-Emeric, C. S., Corazzini, K., McConnell, E. S., Pan, W., Toles, M., Hall, R., & Burd, A. (2017). Effect of promoting high-quality staff interactions on fall prevention in nursing homes: A cluster-randomized trial. JAMA Internal Medicine, 177(11), 1634-1641. Eckstrom, E., Neal, M. B., Cotrell, V., Casey, C. M., McKenzie, G., Morgove, M. W., & Lasater, K. (2016). An interprofessional approach to reducing the risk of falls through enhanced collaborative practice. Journal of the American Geriatrics Society, 64(8), 1701-1707. Florence, C. S., Bergen, G., Atherly, A., Burns, E., Stevens, J., and Drake, C. (2018). Medical costs of fatal and nonfatal falls in older adults. Journal of American Geriatric Society, 66: 693-698. doi:10.1111/jgs.15304 Howard, B. (2018). My Safe and Sound Plan for stay falls free- Falls prevention workbook for older adults. Retrieved from https://issuu.com/bshowardotr/docs/bhoward_safe_and_sound_workbook_201 Industrial Safety & Hygiene News. (2017). Typical nursing home reports 100-200 patient falls per year. Retrieved from https://www.ishn.com/articles/106828-typical-nursing-homereports-100-200-patient-falls-per-year Isaranuwatchai, W., Perdrizet, J., Markle-Reid, M., & Hoch, J. S. (2017). Cost-effectiveness analysis of a multifactorial fall prevention intervention in older home care clients at risk for falling. BMC Geriatrics, 17(1), 199. AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 37 Kamei, T., Kajii, F., Yamamoto, Y., Irie, Y., Kozakai, R., Sugimoto, T., & Niino, N. (2015). Effectiveness of a home hazard modification program for reducing falls in urban community-dwelling older adults: A randomized controlled trial. Japan Journal of Nursing Science, 12(3), 184-197. Kwan, E., & Straus, S. E. (2014). Assessment and management of falls in older people. Canadian Medical Association Journal, 186(16), 610-621. Law, M., Cooper, B., Strong, S. Stewart, D., Rigby, P., & Letts, L. (1996). The PersonEnvironment-Occupation model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy, 63(1), 9-23 Peterson, E. W., &, Clemson L. (2008). Understanding the role of occupational therapy in fall prevention for community-dwelling older adults. OT Practice 13(3): CE 1-8. Phelan, E. A., Aerts, S., Dowler, D., Eckstrom, E., & Casey, C. M. (2016). Adoption of evidence-based fall prevention practices in primary care for older adults with a history of falls. Frontiers in Public Health, 4, 190. doi:10.3389/fpubh.2016.00190 Pynoos, J., Steinman, B. A., Do Nguyen, A., & Bressette, M. (2012). Assessing and adapting the home environment to reduce falls and meet the changing capacity of older adults. Journal of Housing for the Elderly, 26(1-3), 137-155. doi:10.1080/02763893.2012.673382 Roberts, P. S., & Robinson, M. R. (2014). Health policy perspectivesOccupational therapys role in preventing acute readmissions. American Journal of Occupational Therapy, 68, 254259. http://dx.doi.org/10.5014/ajot.2014.683001 Scaffa, M.E., Reitz, S.M., & Pizzi, M. A., (2010). Occupational therapy in the promotion of health and wellness. Philadelphia, PA: FA Davis Company. Sherrington, C., Michaleff, Z. A., Fairhall, N., Paul, S. S., Tiedemann, A., Whitney, J., & Lord, AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 38 S. R. (2017). Exercise to prevent falls in older adults: An updated systematic review and meta-analysis. British Journal of Sports Medicine, 51(24), 1750-1758. Stark, S. L., Somerville, E., Keglovits, M., Smason, A., & Bigham, K. (2015). Clinical reasoning guideline for home modification interventions. American Journal of Occupational Therapy, 69, 6902290030. http://dx.doi.org/ 10.5014/ajot.2015.014266 Stark, S., Keglovits, M., Arbesman, M., & Lieberman, D. (2017). Effect of home modification interventions on the participation of community-dwelling adults with health conditions: A systematic review. American Journal of Occupational Therapy, 71(2):1-11. doi: 10.5014/ajot.2017.018887. Strong, S., Rigby, P., Stewart, D., Law, M., Letts, L., & Cooper, B. (1999). Application of the Person-Environment-Occupation Model: A practical tool. Canadian Journal of Occupational Therapy, 66(3), 122-133. Visschedijk, J. H., Caljouw, M. A., Bakkers, E., van Balen, R., & Achterberg, W. P. (2015). Longitudinal follow-up study on fear of falling during and after rehabilitation in skilled nursing facilities. BMC Geriatrics, 15(1), 161. Vlaeyen, E., Stas, J., Leysens, G., Van der Elst, E., Janssens, E., Dejaeger, E., & Milisen, K. (2017). Implementation of fall prevention in residential care facilities: A systematic review of barriers and facilitators. International Journal of Nursing Studies, 70, 110-121. AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 39 Appendix A Survey for Staff Working Within Springhill Village 1.) How could falls be prevented at Springhill Village? 2.) What is Springhill Village doing to address falls? 3.) What is the role of an occupational therapist in addressing falls? 4.) For those residents who are returning to their home environment at discharge, what do you think are their biggest challenges? 5.) How does Springhill Village prepare residents for transition to home after discharge? 6.) What else could Springhill Village do to help provide a safe transition to home? AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION Appendix B Pre- Session Survey: please complete this portion prior to the start of the session 1. Please rate your confidence level with addressing fall prevention. No confidence 0 1 2 3 4 5 Exceptional confidence 2. Please rate your current confidence level with multifactorial fall prevention programs. No confidence 0 1 2 3 4 5 Exceptional confidence 5 Exceptional confidence 3. Rate your current knowledge for addressing fall prevention. No confidence 0 1 2 3 4 4. Rate your current knowledge of evidence-based research, in relation to fall prevention. No confidence 0 1 2 3 4 5 Exceptional confidence 5. Rate how likely you are to incorporate fall prevention programs into interventions. Not likely 0 1 2 3 4 5 Very likely 40 AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION Appendix C Post-Session Survey: please complete this portion after the presentation is completed. Please turn into presenter before leaving. Thank you! Part A: 1. Please rate your confidence level with addressing fall prevention. No confidence 0 1 2 3 4 5 Exceptional confidence 2. Please rate your current confidence level with multifactorial fall prevention programs. No confidence 0 1 2 3 4 5 Exceptional confidence 5 Exceptional confidence 3. Rate your current knowledge for addressing fall prevention. No confidence 0 1 2 3 4 4. Rate your current knowledge of evidence-based research, in relation to fall prevention. No confidence 0 1 2 3 4 5 Exceptional confidence 5. Rate how likely you are to incorporate fall prevention programs into interventions. No confidence 0 1 2 3 4 5 Exceptional confidence 6. Overall, how would you rate this educational in-service? [ ] Excellent [ ] Good [ ] Fair [ ] Poor 41 AN OCCUPATIONAL PERSPECTIVE FOR ADDRESSING FALL PREVENTION 1= Strongly Disagree 2= Disagree 3= Neither agree or disagree 4= Agree 5= Strongly Agree N/A= not applicable PART B: 1. Objectives were clearly defined. 1 2 3 4 5 N/A 3 4 5 N/A 3 4 5 N/A 5 N/A 2. Learning objectives were met. 1 2 3. Content organized and easy to follow. 1 2 4. Safe and Sound Workbook and PowerPoint was helpful. 1 2 3 4 5. The information presented will be useful for providing patient care moving forward. 1 2 3 4 5 N/A 6. The amount of information presented was adequate for the time allowed. 1 2 3 4 5 N/A 3 4 5 N/A 3 4 5 N/A 3 4 5 N/A 3 4 5 N/A PART C: 1. Presenter was organized. 1 2 2. Presenter was well prepared. 1 2 3. Presenter was knowledgeable about topics discussed. 1 2 4. The style of presentation was adequate. 1 2 42  ...

... Running head: PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Title: Patient Readability and Clinician Education on Common Conditions in Outpatient Occupational Therapy Alexander D. Baird May, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Erin K. Peterson, DHSc, OTR, CHT PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS A Capstone Project Entitled Title: Patient Readability and Clinician Education on Common Conditions in Outpatient Occupational Therapy Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Alexander D. Baird Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date 1 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Patient Readability and Clinician Education on Common Conditions in Outpatient Occupational Therapy Abstract The primary purpose of this Doctoral Capstone Experience (DCE), in unison with clinical skills, was to develop readable educational handouts for patients with various conditions to increase their functional outcomes while minimizing barriers due to poor health literacy. Additionally, clinician handouts were created to promote use of evidence-based interventions within an outpatient setting. Current literature justifies the need for improving readability of patient educational materials as this and overall health literacy can have a major influence on healthcare outcomes for patients and should always be considered. To improve patient comprehension with educational materials, content should be developed with simpler terms, shorter sentences, and use of pictures (Eltorai & Wang, 2014). A needs assessment consisting of semi-structured interviews with patients and clinicians was completed by an occupational therapy (OT) student to develop guidelines for educational handout creation. After completion of each handout, the OT student utilized the Hemingway App software to establish the grade level of readability to ensure it met the national recommendation from MedlinePlus (2017) of 7th 8th grade. After 14 weeks, 11 educational handouts were completed for both clinicians and patients. Two outcome surveys were also developed to measure effectiveness of the project. Throughout the DCE, the OT student improved skills in patient care, program development, leadership, and advocacy. Keywords: occupational therapy, patient education, health literacy, readability 2 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Literature Review & Background Health literacy In many instances, research suggests that patients often have low health literacy and readability in relation to educational resources (Eberlin, Vargas, Chuang, & Lee, 2015; Perez et al. (2017). The Patient Protection and Affordable Care Act of 2010, defines health literacy as the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions (Centers for Disease Control and Prevention [CDC] 2016, p. 1). Health literacy throughout the United States has been a concern for many years. Berkman, Sheridan, Donahue, Halpern, & Crotty (2011) stated that over 80 million Americans have limited health literacy linking to a greater risk of poor healthcare accessibility and poor healthcare outcomes. Diminished health literacy can be the result of many sources, however the CDC (2016) states that health literacy issues are a direct result of written materials being too challenging. As a suggested improvement for health literacy across all healthcare, recommendations from the CDC include but are not limited to: 1) constructing educational materials that are written to match the skill set of the consumer, 2) working alongside educators to assist with building a health literacy curriculum, and 3) improving clinician communication skills when speaking with a consumer (CDC, 2016). These are all areas of improvement that can be addressed during the completion of this DCE project. It is imperative to note that health literacy should also be addressed for families, communities, and even organizations that provide health related services (Batterham, Hawkins, Collins, Buchbinder & Osborne, 2016). Uniformity of health literacy among all settings may contribute to improved functional outcomes for healthcare consumers. Additionally, health literacy improvements are an effective education and prevention tool to improve disease management 3 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS and treatment adherence (Zhang, Terry & McHorney, 2014, p. 1). The implications of poor health literacy from the literature confirm an appropriate rationale for addressing this need through this DCE. Readability Current literature justifies the need for rewording of patient educational materials to improve patient outcomes. According to Perez et al. (2017), health literacy and readability can have a major influence on healthcare outcomes for patients and should always be considered. The completion of this DCE project takes place in an outpatient hand and neuro setting where patients often receive educational handouts; however, these handouts often have medical terms and jargon that patients do not comprehend. MedlinePlus provides a national recommendation of writing health related education materials at a 7th - 8th grade reading level (MedlinePlus, 2017). As healthcare professionals, it is critical to provide patients with quality and clientcentered care. Patient education is a characteristic of client-centered care in which clinicians should confirm readable education is prescribed to ensure healthy outcomes. Unfortunately, this is often not the case. According to researchers from the Association of Bone and Joint Surgeons, 81% of orthopedic patient education materials exceeded the 8th grade reading level (Eltorai & Wang, 2014). Similarly, researchers Shah, Yi, & Stein (2015) analyzed 227 patient educational resources with the Flesch-Kincaid readability tool. Results stated that that of the 227 articles, only 31 fell into the recommended sixth to eighth grade reading level, with a mean grade of 9.8. Kher, Johnson, and Griffith (2017) analyzed 70 patient education websites using various readability tools and identified that only five websites (7%) scored within the national recommendation of readability. Among the five different readability tools, the mean grade level averages of the 70 websites were: 9.79, 11.95, 15.17, 11.39, and 48.8 (Kher et al., 2017). In 4 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS addition, research has been completed on areas of specialty demonstrating readability concerns. Hand therapy education in relation to carpal tunnel surgery had an overall average reading level of 13.1 after analyzing 102 articles (Eberlin et al., 2015). Comparably, The American Laryngological, Rhinological and Otological Society, utilized valid tools to identify the readability of 14 subspecialty educational resources (Hansberry et al., 2014). The average readability for these resources exceeded well beyond the national recommendation at grades 10th through 15th (Hansberry et al., 2014). Other researchers suggested that readability and health literacy improvements in postoperative spine education would improve health outcomes for patients (Long, Modi, Haws, Khechen, Massel, Mayo, & Singh, 2018). In one study, a single two-hour educational session was administered to a group of patients with various spinal injuries prior to surgery (Eastwood et al., 2018). The results of the study revealed that after completion of the education session and surgery, reports of reduced emergency room utilization, improved overall patient satisfaction, achievement of expected improvements and alleviation of back pain were documented with greater success (Eastwood et al., 2018, p. 2). In summation, the results from the literature review in regards to readability reveal that there is a patient readability issue across multiple settings within the healthcare system. Based on research recommendations, using simple terms, shorter sentences, and adding pictures will aid in making education materials more understandable (Eltorai & Wang, 2014). By increasing readability in this DCE setting, there is a potential opportunity to reduce readmission rates and exacerbations of conditions, as well as provide additional resources to benefit the patient upon discharge (Berkman et al., 2011). 5 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Assessing readability. After reviewing the literature, several readability tools were discovered consisting of different levels of complexity, pricing, and function. In this DCE project, it was imperative that the selection of a readability tool was both valid and reliable. One of the most common readability tools utilized among the literature was the Flesch Reading Ease and Flesch-Kincaid reading levels formula which can be accessed via Microsoft word (Howard & Smith, 2018; Kapoor, George, Evans, Miller, & Liu, 2017; Prabhu et al., 2016). Morony, Flynn, McCaffery, Jansen and Webster (2015) utilized this tool to estimate the average grade level on patient education for patients with chronic kidney disease. The Flesch-Kincaid formula estimates the US [sic] grade level required to read text using the average number of words per sentence and the average number of syllables per word and is expressed as a grade (Morony et al., 2015, p. 844). Other common and credible readability tools utilized throughout the literature included The Gunning Fog Score (GFS), The Coleman-Liau Index (CLI), and The Simple Measure of Gobbledygook (SMOG) (Betschart, Zumstein, Bentivoglio, Engeler, Schmid & Abt, 2017; Kher, Johnson & Griffith, 2017). Oddly, after attendance to a marketing forum within the DCE facility, the Hemingway Editor software was presented by chief of marketing staff as the readability software utilized for the hospitals website. This software is a free online service that assists with developing clear, concise, and readable written material by providing the precise grade level (Long & Long, 2016). Ferrari, Witschel, Spagnolo, & Gnesi, (2018) stated that selection of the Hemingway Editor had multiple benefits including: free access and download, identification of sentences that are hard to read, and providing suggestions for terms with simpler alternatives. Stephens (2015) completed a review on this editing software confirming it as a dependable (p. 1). The author also stated that a function of this software was to interpret the grade level that is required to understand the content based on the vocabulary and writing style 6 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS (Stephens, 2015, p. 1). Grade level readability was a primary focus of this DCE project, therefore, the Hemingway Editor was chosen. Due to the high volume of patient education development, it was necessary to have a software that was time efficient, accurate, and credible. Clinician education To complement the revised patient education handouts, a form of continuing education was established with the development of entry-level practitioner handouts containing current evidence-based practices for specific common conditions. Clinicians should always continue to improve their competence and learn new treatment strategies as a means to improve client care. For this DCE setting and across all settings, there is direct value in utilizing current evidencebased interventions. Wilson, Barger, Perez & Brooks (2018) stated that continuing education for clinicians is imperative to ensure client-centered care with an end goal of improving health related outcomes. By providing the OT practitioners on staff with current evidence on how to treat specific conditions, health outcomes will likely improve. Cervero & Gaines (2015) completed five systematic reviews to determine if continued education was effective for physicians. Results from the reviews indicated that continuing education improves physician performance and patient health care outcomes (Cervero & Gaines, 2015). At the physician level, benefits are reported for improving patient care (Cervero & Gaines, 2015) further justifying additional evidence for the purpose of developing current evidence-based interventions for the OT practitioners on staff. In a non-randomized control study, continuing education activities were prescribed to a variety of educators to learn a new intervention method for patients with chronic obstructive pulmonary disorder (COPD) (Gagn, Moisan, Lauzier, Hamel, Ct, Bourbeau & Boulet, 2018). Researchers from the study concluded a possible increase in educators performance levels in delivering effective therapeutic patient education (TPE) 7 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS interventions, and, in turn, COPD patient outcomes (Gagn et al., 2018, p. 10). Therefore,a common theme among the literature was that education for clinicians is imperative and should be specifically designed to improve patient health-related outcomes. Theory & Model to Support DCE To help guide this DCE, two OT theories were utilized: the Person-OccupationEnvironment model (PEO) and the biomechanical/rehab frame of reference. Person-occupation-environment model (PEO) The PEO model values all aspects of a patient's life including the person, their environment, and their occupations as it relates to their ability to participate and engage independently in their daily routine (Cole & Tufano, 2008). According to Brown (2016), health literacy should be comprehensive of the person, situation, and environment; the inclusion of these factors when assessing health literacy is crucial to successful therapeutic outcomes. When assessing all three components of this model, it is key to start with the person. In this project, there were two people that were tailored to during the development of the handouts: the patient and the clinician. It was essential to first identify who the person is and what their needs are as a means to remain client-centered. For both projects, educational handouts were developed to benefit the consumer first, therefore it was imperative to maximize the fit for each of these consumers. The PEO model, according to Cole & Tufano (2008), is about maximizing fit to facilitate both appropriate assessment and function. To ensure this theory process, identifying the most client-centered approach is completed by taking into consideration all aspects of the person, environment, and occupation. This can be done simply by performing a needs assessment to get direct information from the person about these components. A perfect example of maximizing fit for the patient was developing the educational handouts for the 8 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS patient in readable language as a means to prevent further injury, exacerbation, and/or readmission. Additionally, an example of maximizing fit for the clinician would be to ensure that the educational handouts include pertinent content that will assist with their day-to-day interactions during patient care. The next component of the PEO model considered for this project is assessing the environment (Cole & Tufano, 2008). The DCE environment was a hospital setting however, the handouts addressed different aspects of the patient's environment as a means to make modifications and promote education both inside and outside of the clinic. Multiple environments can be addressed when providing education so it is imperative that the patient is aware of how the content can apply and be generalized across different contexts. The clinician environment remained the same throughout the project as they were working in an outpatient setting. The final component of the PEO model considered is occupation (Cole & Tufano, 2008). Occupation is extremely important as this helps guide the focus of determining what the consumer wants and needs to do in order to participate in desired tasks. From the patient perspective of the project, the focus was to utilize information from the needs assessment to develop the readable educational content as a means to assist the patient with improving their independence with occupational performance and engagement. From the clinician perspective of the project, utilizing information from the needs assessment was important to further understand their role as a healthcare practitioner to maximize benefit for the client during treatment. Biomechanical and rehabilitative frame of reference Since the DCE occurred in an outpatient hand/neuro setting, the biomechanical/rehab frame of reference also guided this project. The information being conveyed in the handouts 9 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS related directly to body mechanics, range of motion, strength, endurance, and overall function (Cole & Tufano, 2008). Clinicians in this practice setting typically use this frame of reference during evaluation and treatment. Use of appropriate language and terminology was imperative for providing information on specific common conditions in regards to the clinician handouts. In regards to terminology for patients and the development of their educational content, using simpler terms, pictures, and fewer words will maintain the integrity of this frame while making it readable for improved outcomes. Additionally, this frame of reference involves the knowledge and use of good body mechanics and ergonomics during occupational engagement to prevent injury (Cole & Tufano, 2008). By providing patients with materials they understand, it will likely facilitate improved function and participation in occupation. Screening & Evaluation Clinician assessment To ensure this project would address site-specific needs, a plan was formulated by the OT student to complete a needs assessment prior to the development of the educational handouts. The OT student discussed the project content, completed a strengths-weaknesses-opportunitiesthreats (SWOT) analysis of current education materials, and identified the key components of patient education necessary with the two outpatient OT practitioners on staff. After presenting some previous literature statistics on readability, the clinicians agreed that their content material was indeed well above the 7th-8th grade reading level recommendation from MedlinePlus (2017). Clinicians communicated concerns of low health literacy and poor readability in their patient population leading to a direct impact on health related outcomes and diminished occupational performance. Authors Berkman, Sheridan, Donahue, Halpern, and Rotty (2011) stated that low health literacy is linked to poor medication adherence, re-hospitalizations, and 10 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS even increased mortality in some cases. A group of researchers working with COPD patients examined the difference between low health literacy written handouts versus traditional handouts and its effect on showing patients how to use their medications (Beatty, Flynn, & Costello, 2017). Patients who received the low literacy education demonstrated drastic improvements in their technique with use of inhalers when compared to the patients who received the traditional handouts (Beatty, Flynn, & Costello, 2017). Another area of concern that was noted during the SWOT analysis and conversation with clinicians was that the educational content given out was too lengthy, making it hard to follow. The clinicians remarked that too much information can be just as harmful as too little, noting that a balance is key. Hansberry, Agarwal, & Baker (2015) stated that if this material were rewritten in a simpler narrative, the general readership that would benefit from the material would likely increase (p. 115). Lastly, the clinicians noted that the patient education handouts did not provide valuable resources. In a study with patients demonstrating chronic low back pain, patient education and advice was found to be just as effective as exercise (Otoo, Hendrick, & Ribeiro, 2015). As a result of this portion of the needs assessment, the OT student developed criteria for the educational handouts. Some items to highlight included: definition of OT, OTs role in treating the specific condition, simple description of condition, pictures, and additional resources as necessary. These results were concurrent with the literature recommendations of using simple terms, shorter sentences and adding pictures (Eltorai & Wang, 2014, p. 1184). Additionally, the OT student presented the idea of developing entry-level handouts on common conditions seen in practice for clinicians with current evidence-based interventions. The OT practitioners on staff discussed interest and support with both projects moving forward. Patient assessment 11 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS The second priority task for the needs assessment was to engage in a conversation with various patients about previous educational handouts, pros and cons of handouts they have received in the past, items they would love to see on future handouts, and personal experiences about conversations they have had with clinicians that were beyond their understanding. In a review of the literature, several researchers used this direct feedback approach (Ndosi et al., 2016; Williams, Muir, & Rosdahl, 2016). Ndosi and colleagues (2016) utilized a formal tool called the Educational Needs Assessment with over 130 patients with rheumatoid arthritis (RA) to determine their educational needs. The results determined that needs-based education helps improve patients self-efficacy and some aspects of health status (Ndosi et al., 2016, p. 1131). Comparably, Williams et al., (2016) interviewed five patients with glaucoma to review revision of educational materials to ensure a client centered approach. The literature provided a foundational guide for an appropriate measure to gather data. The interview process with patients was very informal, yet effective. There were no specific guidelines or criteria for selection of patients, with the exception of being a patient at the site. Many patients interviewed provided passionate responses about this topic and were willing to provide valuable feedback. One concern during the interview was from a stroke survivor who stated dont use dont. The patient went on to say, This can be confusing, just tell us exactly what we should do and not what we shouldn't. This feedback was a crucial component in how to phrase and use specific verbiage when developing the handouts. Another patient suggested using pictures or demonstrations to provide a visual for all of the big words. Alqubayshi, Alotaibi, & Al-Shahry (2018) measured effectiveness of different patient education approaches, finding that visuals and demonstrations had the most value. Discussion and 12 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS demonstration should be provided by clinicians upon distribution of educational materials to ensure further understanding. Additional common concerns that patients presented during the needs assessment included: not understanding scientific language, being given the information as homework with no discussion, and receiving too much information at once. In one study, information overload was noted in patients with chronic conditions, having a direct negative impact on patients intentions to utilize educational materials (Liu & Kuo, 2016). From the patient feedback, the OT student identified a dos and donts list as a guide for developing patient education content. This portion of the needs assessment provided insight from the consumer perspective, providing value to criteria. After reflection on the discussions with patients, an additional list of items was created to format into the educational handouts to ensure a client-centered approach. Readability assessment The final task of the needs assessment was to identify which readability tool would be the most practical and efficient. After reviewing the literature, several readability tools were listed consisting of different levels of complexity, pricing, and function (Kher et al., 2017; Betschart et al., 2017). After discussion with the OT practitioners on staff, it was recommended to utilize the Hemingway Editor Software to maintain uniformity with the marketing department. This is an efficient tool that can assist with developing clear, concise, and readable written material by providing the precise grade level (Long & Long, 2016). The tool was trialed with different educational materials, justifying the efficiency and convenience of the free software. Compare and contrast how the screening/evaluation process may be different in existing and emerging areas of OT 13 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS The screening and evaluation process for development of educational handouts will look fairly different across existing and emerging areas of OT; However, Dumas, Carmody, Black and Blake (2018) stated that OT practitioners should be addressing readability in all patient education materials across all settings. One notable difference in the screening and evaluation process is how the setting will impact the efficiency of conducting the needs assessment. For example, in some existing areas of OT, such as acute care, rehab, and surgical care, patients require immediate care as the primary focus. Lower level patients may alter the screening and evaluation process making it challenging or inappropriate to interview the patient and clinician during the needs assessment. In this DCE, the interview was conducted in an outpatient setting, allowing for conversation that is more casual with increased time for follow up. In an acute/inpatient setting, immediate patient care is needed for assessing function and discharge planning. This may limit the amount of time dedicated to performing a needs assessment. Another existing area of practice that will require a different screening and evaluation approach is with pediatrics. In a pediatric setting, the OT practitioner may need to screen and evaluate teachers, parents, and caregivers to get a valid understanding of educational handout needs. In contrast to this DCE where direct patient and clinician responses were incorporated into the development of the handouts, children may not be apt or understand how to express their educational concerns, creating an additional challenge. In emerging areas of OT practice such as low vision, screening and evaluating may present with more difficulty. Warren, DeCarlo, & Dreer (2016) stated that older adults with low vision may take longer to read and understand health information. This poses a concern when performing a needs assessment on readability. However, it may provide relevant interventions to improve the health literacy of individuals with low vision. 14 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Other emerging areas of practice such as mental health may also require a different screening and evaluation approach when completing a needs assessment for education materials. Patients may not be appropriate for interview or lack the ability to express concerns. Due to the variable conditions and presentations, it may not be feasible in some cases to provide educational materials. However, OT staff would benefit from screening and evaluation to identify their needs as it relates to treatment for the mental health population. This screening and evaluation process may look very similar to this DCE needs assessment with clinicians. Implementation Description of implementation The implementation phase of this DCE project was organized and scheduled based on a weekly planning guide to ensure project success. Project success is defined as the completion of a project or program of interest by the consumer within the constraints of time, cost, performance, and without disturbance of workflow (Kerzner & Kerzner, 2017). The weekly planning guide provided a strict timeline for completion of the educational handouts as they were to be submitted and presented to the site committee by the end of week 11. Completion by week 11 allowed for a reasonable turnaround time for the OT student to make edits prior to departure at week 14. Each week a specific common condition was selected to be the primary focus of research and handout completion. Through the needs assessment, it was determined that the clinician handout was to be developed first to establish the difficult end of readability. The identification of readability for the clinician handout provided an opportunity for comparison when creating readable patient handouts. A separate duplicate document of each handout was created to maintain tracking of resources and citations. 15 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Criteria selection for handouts. Inclusion and exclusion criteria for the educational handouts were established based on the results from the needs assessment. The patient education criteria included the following items: OTs role (advocacy), condition description, causes of condition, signs and symptoms, preventative measures (environmental and/or activity), daily task modifications (occupation), therapy focus, prognosis, and additional resources (Appendix A). The clinician criteria included: description of the condition, signs/symptoms/common patient complaints, appropriate provocative tests, evidence-based interventions, differential diagnoses, role of OT with specific condition, and orthosis options (Appendix B). Clinician handout development. The clinician handouts were created in a logical sequence to promote flow and organization. The primary resource utilized for development of these handouts was the Fundamentals of Hand Therapy, Clinical Reasoning and Treatment Guidelines for Common Diagnoses of the Upper Extremity (Cooper, 2014). This is a relevant, common, and appropriate resource that is primarily used for entry-level outpatient therapy practice. The information from this text created a foundation for the basic concepts needing to be conveyed in the handouts. Information was extracted from the book, paraphrased, reworded, and placed into the appropriate category, utilizing page numbers to reference as needed. The information was synthesized through a subjective lens of importance. Information that was deemed necessary during the needs assessment was also taken into account when extracting specific content. Though the book provided foundational concepts, additional information was gathered through evidence-based research, organizations, and websites. There was no focus on word choice, phrasing, or inclusion of pictures, as the primary focus of these handouts were to provide evidence-based interventions. For comparison purposes with the patient handouts, the Hemingway Editor was used to assess readability and confirmed the level of all clinician 16 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS handouts as post-graduate. This is the highest level of readability that can be assessed using this software and appropriate for clinician use due to their level of education. After completion of each clinician handout, the OT student presented the information to the site mentor to verify content and formatting. Once the information was confirmed, the OT student proceeded to begin development of the patient handouts. Patient handout development. After completion of each clinician handout, the patient handout was constructed to be a simplified copy. As with the clinician handouts, the Cooper (2014) text assisted with developing general information for each category. The Cooper (2014) text was extremely effective in providing alternative ways to present complex information to patients. This was a useful blueprint, however it was not the only source of information for development. Additional information came from websites and organizations that already provided patient education such as the Mayo Clinic, MedlinePlus, and the American Society of Hand Therapists. One important feature for these handouts was to select an image that portrayed the condition in an effective and appropriate manner. Imaging provides a visual component that complements the goal of readability (Eltorai & Wang, 2014). As suggested by the literature, the OT student paraphrased, modified, and simplified the information once constructed (Eltorai & Wang, 2014). The written material required an extensive trial and error method for simplification of words and sentences. Utilization of the Hemingway Editor was key as it provided direct feedback on grade level and provided suggestions for simplification. As each section was written for the patient handouts, it was processed through the Hemingway Editor to ensure that the material was being written appropriately. At the completion of each handout, it was cross-referenced and checked for a readability grade level between 7th and 8th grades to align with the MedlinePlus recommendation (MedlinePlus, 2017). 17 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Leadership and effective implementation The leadership skills presented by the OT student in this DCE promoted effective implementation of this project. According to Sonnino (2016), there are two types of leadership behaviors: task behaviors and relationship behaviors. The task behaviors allow the individual to accomplish their desired goals while influencing other leaders to meet their objectives, whereas the relationship behaviors allow professional relationships to develop and thrive for project completion (Sonnino, 2016). In this DCE, a combination of task and relationship behaviors was utilized to guide the implementation of this project. Specific leadership skills also complemented these behaviors. The primary leadership skill to promote effective implementation was communication. This was a key component during the implementation phase as it guided and facilitated an organized completion of the educational handouts. Project completion objectives were established with the site mentor as a preceding task. Frequent communication with patients and clinicians throughout the implementation phase ensured a client-centered approach. This type of communication also allowed for additional improvements to be made throughout the development process. The OT student frequently communicated with the site mentor as a means to receive professional feedback, implement recommendations, and confirm progress. This was an effective strategy to ensure successful completion and maintenance of a professional relationship. The second leadership skill that promoted effective implementation was responsibility. As a self-directed project, it was imperative that the OT student remained responsible, productive, and organized each week. Several tasks were necessary to complete each week to balance the clinician handouts, patient handouts, research, and clinical skills. During the 18 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS implementation phase, it was a necessity to delegate the appropriate amount of time to each component to ensure quality and timely completion. An even distribution of workload promoted a successful outcome for project completion. The last leadership skill that complemented effectiveness was flexibility. This skill was a key attribute as it required adaptability and improvisation throughout the implementation phase. Throughout this phase, many changes, recommendations, and tasks were presented. Each day varied, requiring different levels of workload. Having the ability to adapt and improvise along the way improved the production and quality of the educational handouts. Staff development Staff development was promoted with the implementation of the clinician educational handouts, providing evidence-based interventions to improve clinical practice skills. This staff development project was created under the foundational principle of beneficence which is an ethical principle established by the occupational therapy code of ethics (AOTA, 2015). One aspect of this principle states that when possible, clinicians should use evaluation, planning, intervention techniques, assessments, and therapeutic equipment that are evidence-based, current, and within the recognized scope of occupational therapy practice (AOTA, 2015, p. 2). For common conditions seen in this outpatient clinic, therapists will now have current, up-to-date evidence-based interventions to improve their patient care. Evidence-based interventions were provided to the outpatient OT team to utilize in future practice as a means to demonstrate a concern for the well-being and safety of the recipients of their services (AOTA 2015, p. 2). Continuing education in this manner can be an effective way to promote staff development as it carries ethical tenants of the OT profession. Committee submission 19 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS According to site policy, committee approval was required prior to distribution of any educational materials to clients. To meet this requirement, the OT student held a luncheon presentation with committee members, OT staff across all practice settings within the organization, to provide a better understanding of the project. During this presentation, the OT student provided background information, a purpose statement, evidence-based research, and process of completion for the educational handouts. This presentation was also utilized as a discussion forum in which feedback was provided throughout. Excitement and positive feedback were provided to the student following the presentation as the staff was eager to implement the project. A two-week deadline was established with staff to make edits and suggestions on the handouts as needed. This was a timeline that gave the OT student an opportunity to make edits prior to the departure from the site. Discontinuation and Outcome Design of the ongoing process for quality improvement and project outcomes Due to limited time for edits on the educational handouts following the committee review, the implementation of the handouts and use of the outcome measure will be carried on by staff. The completed educational handouts and outcome measure tool were given to the therapists in final form via binder. This gives the therapists on site an opportunity to utilize the handouts as needed, well after the departure of the OT student. The development of the outcome measure and the handouts were reviewed with the OTs on staff to ensure proper use. The design method for continued quality improvement and assessing project outcomes has been selected based on current evidence. The OT student selected and developed an outcome measure using Likert scales for both the patient and clinician educational handouts to continue with the theme of simplicity and readability in order to identify quality improvements and outcomes. Likert scales are typically used in medical education and medical education research (Sullivan & 20 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Artino, 2013). Sullivan & Artino (2013) stated that common uses of the Likert scale include end-of-rotation trainee feedback, faculty evaluations of trainees, and assessment of performance after an educational intervention (p. 541). The outcome measure in this DCE will be used to assess the educational handout effectiveness in a pre- and post-test method. The pre- and posttest method is effective in gathering data prior to and after an intervention to identify a difference in knowledge, skills, or attitudes to help advance practice (Zientek, Nimon, & Hammack-Brown, 2016). These results will also provide valuable feedback for therapists on staff to continue quality improvement for the education. Outcome measure content. The outcome measure using Likert scale questions for the patients were developed by the OT student and cross-referenced with OTs on staff to parallel the content that is presented in the handouts. Each question addresses current levels of understanding in reference to a specific topic on the educational content. Further, it was imperative that the patient outcome measure was written at a 7th 8th grade reading level to maintain the project theme of readability and health literacy. To keep simplicity with patient responses, each question was scored using the following scale: 1 no understanding at all, 5somewhat understand, or, 10- full understanding. The outcome measure for the clinicians also used a Likert scale and was specifically created for the site mentor to determine the effectiveness and sustainability of the project upon OT student departure. The measure helped to ensure project specific feedback for the OT student and will allow the site mentor to reflect on specific aspects of the project. The site mentor will also be able to indicate future use of the project and perceived impact on the facility. Process of assessing outcome for this project. Upon patient arrival to the facility, the OTR will distribute the pretest outcome measure as well as the QuickDASH, which is the 21 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS functional outcome measure utilized at this site. To avoid bias, the pretest outcome measure will be given to the patient at the evaluation, prior to distributing the educational handout. This allows the clinician to identify the patients level of understanding and general health literacy prior to the evaluation. Additionally, with this information, the clinician will have the ability to simplify verbal communication in reference to vocabulary and explain specific aspects of the evaluation to the patient in a comprehensive manner. After educating the patient and sending him/her home with the handout, the post-test outcome measure will be given to the patient at the beginning of the 2nd visit. This method will be effective at determining the patients comprehension for the educational content, allowing the clinician to provide clarity as needed. From the results of these assessments, clinicians can use results and patient feedback to continue improving the quality and effectiveness moving forward. How the project meets societal need The development of this project for the DCE site was in response to the expression of societal needs which were identified through a needs assessment and site mentor insight. The societal needs that were noted included: lack of education, decreased health literacy, and readability concerns in the department. The OT student directly addressed these needs by creating readable patient educational handouts and clinician handouts for the most common conditions seen in outpatient therapy practice. Increased health literacy and improved readability in patient education may improve functional outcomes and directly address the concerns within the department. Ideally, as understanding increases for the patient, so does implementation and adherence (Zhang et al., 2014). Additionally, with evidence-based practice provided through the handouts, clinicians can incorporate evidence-based treatment to improve functional outcomes for patients (Wilson et al., 2018). 22 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Overall Learning Leadership and advocacy Leadership and advocacy skills were utilized throughout the DCE by the OT student to ensure a professional and successful capstone. Leadership skills such communication, responsibility, decision making, accountability and patience all played a role in the development of the educational handouts over the course of the DCE. As a self-directed capstone, the OT student ensured organization by laying the foundation for expectations prior to beginning the needs assessment. This tied directly into the leadership role of responsibility, as each week required a specific task completion. Other than deadlines, there were no additional accountability measures or parties responsible for the completion of this capstone project. However, discipline was required to maintain communication with the site mentor, complete handouts each week, and continue research. Often, priorities had to be established, forcing the OT student to make individual, on-site decisions for efficiency of task completion. Being a 14-week capstone, the OT student had to develop the leadership skill of patience to manage the trial and error process of handout creation. Additionally, advocacy skills were implemented during the development of the educational handouts. In addition to the educational content provided on the handouts, the OT student included: what is occupational therapy and the role of occupational therapy into every common condition handout (Appendix A). This was an effective opportunity to advocate for the profession, as the OT staff (including myself) noted that patients were typically unaware of the difference between OT and physical therapy (PT). Addressing the description and role of the OT profession is imperative and crucial to the credentialing of OT services. Inclusion of this 23 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS information on the educational handouts was a strategy to separate the profession of OT in a manner that is comprehensive and relatable to each patient. Overall learning The completion of this DCE project was complemented by diverse and effective channels of communication. The OT student was able to establish professional relationships with clients, clinicians, and other professional colleagues throughout the DCE to ensure a successful experience. To establish a client-centered and effective project, the OT student utilized oral and written communication to implement feedback into the educational handouts. During nonstructured interviews, the OT student found that the ability to listen to clients was a key communication skill that provoked personal growth as a future clinician and provided a true understanding of perspectives. This type of communication was also appropriate for the topic of readability as it was imperative the OT student utilized vocabulary that was relatable and comprehensive. The OT student and the clinicians on staff had several open discussions about quality improvement for educational handouts. This was professional feedback that increased the validity and reliability of the project. Additionally, upon a rough draft completion of the educational handouts, patients and clinicians were asked to read and offer suggestions. This was an effective form of written communication that influenced the development of the project. The site mentor and OT student had consistent and frequent discussions each day about quality improvement for both project completion and patient care. This was a method that provided organization, structure, and opportunities for suggestions. This DCE experience provided the OT student with the necessary skills to be effective in program development, patient education, clinical skills, and establishment of professional relationships. 24 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS 25 References Alqubayshi, T., Alotaibi, A., & Al-Shahry, F. S. (2018). Measure effectiveness of different approaches of patient education in rehabilitation services. Indian Journal of Public Health Research & Development, 9(9). Beatty, C. R., Flynn, L. A., & Costello, T. J. (2017). The impact of health literacy level on inhaler technique in patients with chronic obstructive pulmonary disease. Journal of Pharmacy Practice, 30(1), 25-30. https://doi.org/10.1177/0897190015585759 Berkman, N. D., Sheridan, S. L., Donahue, K. E., Halpern, D. J., & Crotty, K. (2011). Low health literacy and health outcomes: An updated systematic review. Annals of Internal Medicine, 155(2), 97-107. doi: 10.1059/0003-4819-155-2-201107190-00005 Betschart, P., Zumstein, V., Bentivoglio, M., Engeler, D., Schmid, H. P., & Abt, D. (2017). Readability assessment of online patient education materials provided by the European Association of Urology. International Urology and Nephrology, 49(12), 2111-2117. doi:10.1007/s11255-017-1695-7 Brown, F. K. (2016). Integrating health literacy into occupational therapy (Unpublished doctoral dissertation). Texas Womans University, The Repository. Cervero, R. M., & Gaines, J. K. (2015). The impact of CME on physician performance on patient health outcomes: An updated synthesis of systematic reviews. Journal of Continuing Education in the Health Professions, 35(2), 131-138. https://doi.org/10.1002/chp.21290 Centers for Disease Control and Prevention [CDC]. What is Health Literacy? (2016). Retrieved from https://www.cdc.gov/healthliteracy/learn/index.html PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Dumas, M., Carmody, V., Black, J., & Blake, M. (2018). Readability and quality of patient education materials targeted toward vulnerable populations. American Journal of Occupational Therapy, 72(4_Supplement_1), 7211510194p1-7211510194p1. doi:10.5014/ajot.2018.72S1-PO6015 Eastwood, D., Manson, N., Bigney, E., Darling, M., Richardson, E., Paixao, R., & Abraham, E. (2018). Improving postoperative patient reported benefits and satisfaction following spinal fusion with a single preoperative education session. The Spine Journal, 0(00), 1-6 https://doi.org/10.1016/j.spinee.2018.11.010 Eberlin, K. R., Vargas, C. R., Chuang, D. J., & Lee, B. T. (2015). Patient education for carpal tunnel syndrome: Analysis of readability. Hand, 10(3), 374-380. https://doi.org/10.1007/s11552-014-9718-7 Eltorai, A. E., Sharma, P., Wang, J., & Daniels, A. H. (2015). Most American Academy of Orthopaedic Surgeons online patient education material exceeds average patient reading level. Clinical Orthopaedics and Related Research, 473(4), 1181-1186. https://doi.org/10.1007/s11999-014-4071-2 Ferrari, A., Witschel, H. F., Spagnolo, G. O., & Gnesi, S. (2018). Improving the quality of business process descriptions of public administrations: Resources and research challenges. Business Process Management Journal, 24(1), 49-66. https://doi.org/10.1108/BPMJ-05-2016-0096 Gagn, M., Moisan, J., Lauzier, S., Hamel, C., Ct, P., Bourbeau, J., & Boulet, L. P. (2018). 26 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Comparative impact of two continuing education activities targeted at COPD educators on educational outcomes: Protocol for a non-randomized controlled study using mixed methods. BMC Health Services Research, 18(1), 460. https://doi.org/10.1186/s12913018-3284-6 Hansberry, D. R., Agarwal, N., Shah, R., Schmitt, P. J., Baredes, S., Setzen, M., & Eloy, J. A. (2014). Analysis of the readability of patient education materials from surgical subspecialties. The Laryngoscope, 124(2), 405-412. https://doi.org/10.1002/lary.24261 Hansberry, D. R., Agarwal, N., & Baker, S. R. (2015). Health literacy and online educational resources: An opportunity to educate patients. American Journal of Roentgenology, 204(1), 111-116. doi:10.2214/AJR.14.13086 Howard, R., & Smith, G. (2018). Readability of iPledge program patient education materials. Journal of the American Academy of Dermatology, 79(4), e69-e70. https://doi.org/10.1016/j.jaad.2018.05.038 Kapoor, K., George, P., Evans, M. C., Miller, W. J., & Liu, S. S. (2017). Health literacy: Readability of ACC/AHA online patient education material. Cardiology, 138(1), 36-40. https://doi.org/10.1159/000475881 Kerzner, H., & Kerzner, H. R. (2017). Project management: A systems approach to planning, scheduling, and controlling. Hoboken, N.J. John Wiley & Sons. Kher, A., Johnson, S., & Griffith, R. (2017). Readability assessment of online patient education material on congestive heart failure. Advances in Preventive Medicine, 2017. 1-8. https://doi.org/10.1155/2017/9780317 27 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Liu, C. F., & Kuo, K. M. (2016). Does information overload prevent chronic patients from reading self-management educational materials? International Journal of Medical Informatics, 89, 1-8. https://doi.org/10.1016/j.ijmedinf.2016.01.012 Long, A., & Long, B. (2016). Hemingway Editor (version #1) [Mobile application software]. http://www.hemingwayapp.com/ Long, W. W., Modi, K. D., Haws, B. E., Khechen, B., Massel, D. H., Mayo, B. C., & Singh, K. (2018). Assessing online patient education readability for spine surgery procedures. Clinical Spine Surgery, 31(2), E146-E151. https://doi.org/10.1097/BSD.0000000000000575 Morony, S., Flynn, M., McCaffery, K. J., Jansen, J., & Webster, A. C. (2015). Readability of written materials for CKD patients: A systematic review. American Journal of Kidney Diseases, 65(6), 842-850. https://doi.org/10.1053/j.ajkd.2014.11.025 MedlinePlus. (2017). How to write easy-to-read health materials. Retrieved from https://medlineplus.gov/etr.html Ndosi, M., Johnson, D., Young, T., Hardware, B., Hill, J., Hale, C., & Adebajo, A. (2016). Effects of needs-based patient education on self-efficacy and health outcomes in people with rheumatoid arthritis: A multicenter, single blind, randomized controlled trial. Annals of the Rheumatic Diseases, 75(6), 1126-1132. doi.org/10.1136/annrheumdis2014207171 American Occupational Therapy Association [AOTA]. (2015). Occupational Therapy Code of Ethics. American Journal of Occupational Therapy, 69 (Supplement_3):6913410030p16913410030p8. doi: 10.5014/ajot.2015.696S03. 28 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Otoo, S. K. W., Hendrick, P., & Ribeiro, D. C. (2015). The comparative effectiveness of advice/education compared to active physiotherapy (manual therapy and exercise) in the management of chronic non-specific low back pain. Physical Therapy Reviews, 20(1), 16-26. https://doi.org/10.1179/1743288X14Y.0000000164 Perez, J. L., Mosher, Z. A., Watson, S. L., Sheppard, E. D., Brabston, E. W., McGwin, G., & Ponce, B. A. (2017). Readability of orthopaedic patient-reported outcome measures: is there a fundamental failure to communicate? Clinical Orthopaedics and Related Research, 475(8), 1936-1947. https://doi.org/10.1007/s11999-017-5339-0 Prabhu, A. V., Gupta, R., Kim, C., Kashkoush, A., Hansberry, D. R., Agarwal, N., & Koch, E. (2016). Patient education materials in dermatology: Addressing the health literacy needs of patients. JAMA Dermatology, 152(8), 946-947. doi:10.1001/jamadermatol.2016.1135 Sonnino, R. E. (2016). Health care leadership development and training: Progress and pitfalls. Journal of Healthcare Leadership, 8, (19). doi: 10.2147/JHL.S68068 Shah, A. K., Paul, H. Y., & Stein, A. (2015). Readability of orthopedic oncology-related patient education materials available on the internet. Journal of the American Academy of Orthopaedic Surgeons, 23(12), 783-788. doi: 10.5435/JAAOS-D-15-00324 Stephens, A. (2015). Hemingway Editor. Children's Book and Media Review, 36(5), 20. Sullivan, G. M., & Artino Jr, A. R. (2013). Analyzing and interpreting data from Likert-type scales. Journal of Graduate Medical Education, 5(4), 541-542. doi: 10.4300/JGME-5-418 Warren, M., DeCarlo, D. K., & Dreer, L. E. (2016). Health literacy in older adults with and without low vision. American Journal of Occupational Therapy, 70(3), 7003270010p1 7003270010p7. doi:10.5014/ajot.2016.017400 29 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Williams, A. M., Muir, K. W., & Rosdahl, J. A. (2016). Readability of patient education materials in ophthalmology: A single-institution study and systematic review. BMC Ophthalmology, 16(1), 133. https://doi.org/10.1186/s12886-016-0315-0 Wilson, A. B., Barger, J. B., Perez, P., & Brooks, W. S. (2018). Is the supply of continuing education in the anatomical sciences keeping up with the demand? Results of a national survey. Anatomical Sciences Education, 11(3), 225-235. https://doi.org/10.1002/ase.1726 Zhang, N. J., Terry, A., & McHorney, C. A. (2014). Impact of health literacy on medication adherence: A systematic review and meta-analysis. Annals of Pharmacotherapy, 48(6), 741-751. https://doi.org/10.1177%2F1060028014526562 Zientek, L., Nimon, K., & Hammack-Brown, B. (2016). Analyzing data from a pretest-posttest control group design: The importance of statistical assumptions. European Journal of Training and Development, 40(8/9), 638-659. https://doi.org/10.1108/EJTD-08-20150066 30 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Appendix A Patient educational handout Carpal Tunnel Syndrome and Occupational Therapy What is carpal tunnel syndrome? Injury or compression to what we call the median nerve, which is a nerve that starts in your spine and travels down into your hand through a tight space called the carpal tunnel (located in your wrist). This nerve controls muscles in your hand and provides sensation to the palm side of your forearm, your thumb, pointer finger, and half of your middle finger What causes carpal tunnel syndrome? If you bend or straighten your wrist over and over again Holding your wrist in a stretched, extended, or bent position (often) Arthritis or swelling in wrist o Any of the above items may pinch or squish the nerve running through the wrist causing symptoms of carpal tunnel What are the signs or symptoms of carpal tunnel syndrome? Numbness and tingling on the palm side of wrist, thumb, pointer, and half of middle finger Loss of muscle around the thumb Sometimes muscles in the hand will not work Dropping items Sleep disturbances 31 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Possible ways to prevent or treat carpal tunnel symptoms: avoid sustained pinching or gripping avoid bent or flexed wrist postures - keep wrist neutral avoid repetitive movement schedule positional changes during work or tasks occupational therapy surgical intervention is possible if conservative management does not relieve symptoms What is occupational therapy? Occupational therapy (OT) is a healthcare job that is able to test and treat any person in any setting who has an injury or disability to help them be able to do the things they want and need to do. Occupational therapists will develop a relationship with you to gather relevant information about your life and daily routine Occupational therapists will test: o your ability to move during daily tasks o strength o range of motion o sensation o brain function (if necessary) Occupational therapists will create solutions to fit your needs. Role of occupational therapy with your carpal tunnel: Identify the source of your carpal tunnel symptoms Identify what specific challenges you have every day as a result of your carpal tunnel and create solutions Increase independence by using special equipment, manual techniques, exercise demonstration, general education, activity modification strategies, and splinting to help you regain motion, strength, sensation, and function. o range of motion exercises (shoulder, elbow, forearm, wrist, fingers) o nerve glides o massage (wrist) o stretches (shoulder, elbow, forearm, wrist, fingers) o strengthening (shoulder, elbow, forearm, wrist, fingers) o ice/heat - contrast bath (hot and cold submerge) o Ultrasound, fluidotherapy, paraffin Custom make splint for you if necessary Discuss and show home exercise program WHATEVER YOU NEED! Types of splints: neutral wrist splint, recommended to wear at night Daily activity modifications: Plan rest breaks o Complete wrist stretches during this time Avoid carrying heavy items Wear clothing that is easy to fit (button up shirt, slip on shoes) Increase grip handles when cooking in kitchen Use electronic items in kitchen (e.g. electric can opener vs. a hand can opener) Reduce resting your hand on surfaces for long periods of time When will I recover from carpal tunnel syndrome? Every client has different carpal tunnel symptoms, making it difficult to set a timeline for recovery. However, with occupational therapy and completion of home exercises, you will have the tools to recover. Resources Ergonomic tools: https://www.brownmed.com/blog/carpal-tunnel-syndrome/5-carpal-tunnel-relief-productsyou-need-at-work/ 32 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Appendix B Clinician educational handout Carpal Tunnel What is a carpal tunnel syndrome (CTS)? Carpal Tunnel Syndrome (CTS) is a common problem affecting hand function, caused by compression of the median nerve at the wrist. (https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Carpal-Tunnel-Syndrome) What causes CTS? The terminal portion of the median nerve is particularly vulnerable to compression in this area because it is sandwiched between these flexor tendons and a volar carpal ligament (Cooper, 2014, pg. 288) Signs or symptoms of CTS: numbness, tingling, muscle deformity (ape hand), first web space shortening, muscle weakness. Areas primarily affected include: volar thumb, index, long, and medial half of the ring digits, dropping items, sleep disturbance (Cooper, 2014, pg. 289) Role of occupational therapist with CTS: Build rapport with your client Educate and advocate for OT Identify source of your clients symptoms (cervical, CTS, pronator syndrome, anterior interosseous syndrome) Identify what specific challenges the client has every day as a result of CTS and implement solutions (ADLs, IADLs, community/mobility, leisure, and social participation) o Assess: ROM, MMT, grip/pinch strength, fine motor, pain, sensation, edema, positioning, skin integrity, comorbidities Increase independence for the client by developing strategies/interventions to help them regain strength, motion, sensation, and overall function Instruct/demonstrate home exercise program (tendon glides, AROM, massage, etc.) Fit client for orthosis if necessary Provocative tests: Phalen's, reverse phalen's, tinel's sign, ballantines sign (AIN), bergers test (lumbrical contribution), resisted elbow flexion/pronation (pronator syndrome) Evidence based interventions: wrist immobilization splint (Ghasemi-rad, 2014), tendon glides (Hirata et al., 2016) nerve glides (Hirata et al., 2016), manual therapy (Bongi, Signorini, Bassetti, Del Rosso, Orlandi, & De Scisciolo, 2013; Mohamed, Hassan, Abdel-Magied, & Wageh, 2016), kinesio taping (Chesterton, 2018; Kaplan,Akyuz, Kokar,& Yagci, 2018), low laser treatment (Chesterton, 2018), mechanical wrist traction (Meems, 2017) scapular strengthening, corticosteroid injection (Martins & Siqueira, 2017), wrist AROM, strengthening, yoga (Wipperman, & Goerl, 2016) Common modalities: ultrasound, ice, heat, paraffin (Ordahan & Karahan, 2017) 33 PATIENT AND CLINICIAN EDUCATION ON COMMON CONDITIONS Common Orthoses used: wrist immobilization splint - primarily worn at night but can be used during the day to control work postures and symptoms (cooper, 2014, pg. 291) (Martins & Siqueira, 2017) Differential diagnosis: Anterior nerve palsy, pronator syndrome CTS EBP References Bongi, S. M., Signorini, M., Bassetti, M., Del Rosso, A., Orlandi, M., & De Scisciolo, G. (2013). A manual therapy intervention improves symptoms in patients with carpal tunnel syndrome: a pilot study. Rheumatology international, 33(5), 1233-1241. Chesterton, L. S., Blagojevic-Bucknall, M., Burton, C., Dziedzic, K. S., Davenport, G., Jowett, S. M., & Hay, E. M. (2018). The clinical and cost-effectiveness of corticosteroid injection versus night splints for carpal tunnel syndrome (INSTINCTS trial): an open-label, parallel group, randomised controlled trial. The Lancet, 392(10156), 1423-1433. Cooper, C. (Ed.). (2013). Fundamentals of hand therapy: clinical reasoning and treatment guidelines for common diagnoses of the upper extremity. Elsevier Health Sciences. Ghasemi-rad, M., Nosair, E., Vegh, A., Mohammadi, A., Akkad, A., Lesha, E., & Hasan, A. (2014). A handy review of carpal tunnel syndrome: From anatomy to diagnosis and treatment. World journal of radiology, 6(6), 284. Hirata, J., Suzuki, T., Yamamoto, T., Miyazaki, Y., Ogasahara, Y., Hashizume, H., & Inoue, K. (2016). Effects of tendon and nerve gliding exercises and instructions in activities of daily living following endoscopic carpal tunnel release. Asian Journal of Occupational Therapy, 11(1), 35-41. Kaplan, B. M., Akyuz, G., Kokar, S., & Yagci, I. (2018). Comparison of the effectiveness of orthotic intervention, kinesiotaping, and paraffin treatments in patients with carpal tunnel syndrome: A single-blind and randomized controlled study. Journal of Hand Therapy. Martins, R. S., & Siqueira, M. G. (2017). Conservative therapeutic management of carpal tunnel syndrome. Arquivos de neuro-psiquiatria, 75(11), 819-824. Meems, M., Spek, V., Kop, W. J., Meems, B. J., Visser, L. H., & Pop, V. J. (2017). Mechanical wrist traction as a non-invasive treatment for carpal tunnel syndrome: a randomized controlled trial. Trials, 18(1), 464. Mohamed, F. I., Hassan, A. A., Abdel-Magied, R. A., & Wageh, R. N. (2016). Manual therapy intervention in the treatment of patients with carpal tunnel syndrome: median nerve mobilization versus medical treatment. Egyptian Rheumatology and Rehabilitation, 43(1), 27. Ordahan, B., & Karahan, A. Y. (2017). Efficacy of paraffin wax bath for carpal tunnel syndrome: a randomized comparative study. International journal of biometeorology, 61(12), 2175-2181. Wipperman, J., & Goerl, K. (2016). Carpal Tunnel Syndrome: Diagnosis and Management. American family physician, 94 34  ...

... Running head: YOUTH IN AGRICULTURE 1 Youth in Agriculture: An Occupational Therapy Perspective Kelsey R. Badger April 13, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Jennifer Fogo, PhD, OTR YOUTH IN AGRICULTURE 2 A Capstone Project Entitled Title: Youth in Agriculture: An Occupational Therapy Perspective Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Kelsey R. Badger Occupational Therapy Doctoral Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date YOUTH IN AGRICULTURE 3 Abstract There is a growing number of youths living and working on farms with an increasing number of injuries and deaths resulting in a need to educate youth on safety and disabilities. The purpose of the project was to provide education and resources to agriculture students in hopes to increase awareness, accessibility, and life satisfaction of youth. Through independent research and qualitative interviews, a need was discovered to increase disability awareness and social/community participation for youths, with and without disabilities interested/active in agriculture. A disability awareness presentation was developed and given to approximately 239 students and four educators. As an additional effort taken by the student to increase meaningful interactions between youth, with and without disabilities, as a means of disability awareness, four youth attended the 2019 AgrAbility National Training Workshop where they participated in a youth dinner. This youth dinner was a way for the AgrAbility project to expand resources to the population. Advocating for the youth allowed the National AgrAbility Project to expand services to youth and address occupational justice for this population. This provided the youth with resources that could be utilized to increase independence in various occupations and increase quality of life. YOUTH IN AGRICULTURE 4 Youth in Agriculture: An Occupational Therapy Perspective In 2017, there were approximately two million farms in the United States (United States Department of Agriculture [USDA], 2018). More than half of the 893,000 youth that lived on a farm worked for that farm (National Childrens Center for Rural and Agricultural Health Safety, 2017). Farming/ranching/related agriculture careers are occupations that are one of the most hazardous in the United States and has a disability prevalence of 12.9% (Bureau of Labor Statistics, 2018; Miller & Aherin). In 2014, there were approximately 7,469 youth injured on the farm who resided on the land, and there was a 4.9% disability rate for youth on a farm (Miller &Aherin, 2018; National Childrens Center for Rural and Agriculture Health Safety, 2017). These disabilities that occur on or off the farm may decrease quality of life and independence in their daily routine (Miller & Aherin, 2018). The National AgrAbility Project (NAP) is a national organization whose mission is to increase quality of life for agricultural workers with disabilities through educational opportunities, networking events, online/print resources, funding opportunities, and consultations (AgrAbility, 2019a). The NAP is located at Purdue University along with the Indiana AgrAbility Project (AgrAbility, 2019a). There are 20 State/Regional AgrAbility Projects (SRAP) underneath the NAP (AgrAbility, 2019a). These services are provided to a variety of populations; however, the organization is in the process of expanding to the youth population (AgrAbility, 2019b). The NAPs goal for the youth population is to increase disability awareness by providing resources and implementing programs to facilitate participation in agriculture-based activities (AgrAbility, 2019b). Additionally, the program provides education and encouragement for community projects, 4-H and Future Farmers of America (FFA), to assist YOUTH IN AGRICULTURE 5 youth with disabilities with community participation and increase quality of life (AgrAbility, 2019b). The NAP has disability awareness resources and curriculums that promote adaptations to the environment to increase community participation in agriculturally based projects (AgrAbility, 2019b). An example is, the Indiana AgrAbility Project developed the Bridging Horizons challenge, which serves as a contest for the youth to complete projects within their community to increase independence of a person or people with disabilities (Indiana AgrAbility, 2012). An organization that supports this challenge through the Indiana AgrAbility Project is FFA, an extracurricular program for any youth in school, grades 7th to 12th that provides agricultural education (FFA, 2018). The goal of this program is to increase the life skills in leadership, personal growth, and create a successful career path (FFA, 2018). This program is led by young adults that could adapt the environment and activities to make participation more accessible for youth with disabilities interested in agriculture. Literature Review The purpose of this literature review was to explore disability awareness and interventions that increase community participation of individuals with disabilities. The literature will guide the implementation of an advocacy project, by an occupational therapy (OT) student, through the AgrAbility project for youth and adolescents. Barriers for Participation Youth with disabilities participate less frequently in community activities when compared to youth without disabilities (Bedell et al., 2013). Barriers that may inhibit community participation amongst youth with disabilities are activity demands, environment, and limited resources (availability of programs, equipment, supplies) (Bedell et al., 2013). YOUTH IN AGRICULTURE 6 Anaby et al. (2014) researched the factors affecting participation across home, school, and community settings, as well as, how the settings relate to one another. The participants within this study were parents of typical and non-typical developing youth aged 5-17 years old (Anaby et al., 2014). Within the home setting, higher income was related to fewer obstacles whereas the health conditions and functional issues were related to increased barriers that affected the frequency and involvement of youths participation (Anaby et al., 2014). Within the school setting, health conditions and functional issues were the main barriers of participation (Anaby et al., 2014). The environment is a mediating role between the childs factors and their participation (Anaby et al., 2014). Environmental factors were a direct barrier among participants in all settings while the supports were limited to the home and community setting. The common barriers within the community setting were the activity demands (cognitive, physical, social) and the supports included availability of resources (programs, services, information) (Anaby et al., 2014). The environment served as a mediating factor and supports the need for amending/adapting the environment to increase participation (Anaby et al., 2014). The results of this study support the need for occupational therapists to focus on adapting the environment rather than changing/focusing on the childs impairments. Additionally, it is important to advocate for disability awareness within the community by explaining that the environment can be adapted to fit the needs of an individual with disabilities to increase their participation (American Occupational Therapy Association [AOTA], 2014). Quality of Contact A factor that contributes to disability awareness is the quality of contact between individuals with and without disabilities. Disability awareness programs can include education YOUTH IN AGRICULTURE 7 and peer interaction to improve the knowledge about individuals with disabilities (Spagnolo, Murphy, & Libera, 2008). Keith, Bennetto, & Rogge (2015) investigated attitudes of typical developing individuals on the impact of quantity verses quality of contact with individuals with intellectual disabilities (IDD). Quantity of contact consisted of passing by an individual with IDD and never spending time with her/him (Keith et al., 2015). Quality of contact consisted of spending time with an individual with IDD through volunteering, working, etc (Keith et al., 2015). Higher levels of quality of contact with individuals with IDD was significantly related to greater positive attitudes for typically developing peers (Keith et al., 2015). The quantity of contact (controlled for quality) was found to be related to higher levels of prejudice (Keith et al., 2015); therefore, creating community-based programs to increase the quality of contact between typical developing individuals and persons with IDD is imperative for improving attitudes. Spagnolo et al. (2008) examined the effectiveness of using presentations and personal stories to improve adolescents attitudes toward persons with mental illness. The intervention used modules that focused on personal experiences and research on the topic (Spagnoloa et al., 2008). The modules were presented by a faculty advisor and several consumer presenters with the presentation lasting 60-90 minutes (Spagnoloa et al., 2008). The attitudes of adolescents toward individuals with mental illnesses was affected by the 60-minutes informational session (Spagnoloa et al., 2008). Stigmatized attitudes were reduced through information about mental health and recovery and personal stories of recovery (Spagnoloa et al., 2008). Individuals who viewed the presentation demonstrated decreased stigmatizing attitudes on pity, dangerousness, fear, help, segregation, and avoidance (Spagnoloa et al., 2008). The researchers suggested that high school curriculums should include programs to improve attitudes of the students toward YOUTH IN AGRICULTURE 8 mental illness (Spagnoloa et al., 2008). The interventions consisted of educating on the facts and myths of mental illness and provide support for the adolescents (Spagnoloa et al., 2008). This is an area of practice where OT practitioners can provide appropriate education on disabilities, educate the youth and adolescents, and promote social interaction between individuals with disabilities and without. Through a meta-analysis, Tal, Mannarini, & Rochira (2014) found a high association between sense of community and participation within the adult population (immigrants, typical developing individuals, and individuals with disabilities). There were high levels of sense of community when individuals participated in civic forms of engagement (protest activities, public deliberation, campaigning, voting) (Tal et al., 2014). The feeling of being a member in the community and having an emotional connection contributed to the sense of community (Tal et al., 2014). Additionally, the sense of community and participation was established in the adult population rather than the youth population meaning that adolescents develop more peer relationships rather than a sense of community (Tal et al., 2014). However, sense of community can be introduced in hopes to initiate a sense of community, increase interactions, and promote civic forms of engagement (Tal et al., 2014). Interventions It is pertinent to view an individual holistically and develop interventions that reduce barriers and strengthen the persons skills. Interventions can be driven by underlying barriers and implemented within a program to fulfill the goal of the project. Stigma and social experiences across school-aged youth with intellectual disabilities varies across school settings and communities (Carter, Biggs, & Blustein, 2016). However, there are various interventions that can decrease stigma and promote social interaction between youth YOUTH IN AGRICULTURE 9 with disabilities and without (Carter et al., 2016). Creating a shared experience will allow youth with and without disabilities to engage in the same activities together (Carter et al., 2016). Providing relevant information to the peers may promote confidence with peer interaction and lead to the development of common connections between the peers (Carter et al., 2016). Assigning valued roles to everyone participating in the activity provides the opportunity for each person to feel important and a part of the activity (Carter et al., 2016). Balanced support from staff and faculty can facilitate peer interaction and model positive peer relationships (Carter et al., 2016). These factors can be incorporated into disability awareness programs to promote positive contact between individuals with and without disabilities and assist in the development of peer relationships. Carter et al. (2014) examined interventions in schools that target social competence and peer relationships for youth with autism spectrum disorder (ASD). Authors reported that individuals with ASD may benefit from comprehensive interventions which included educating peers, building competence, creating a supporting culture at the school, reconceptualizing the adult roles, and engaging families (Carter et al., 2014). Creating more meaningful opportunities for youth with ASD to develop knowledge, positive attitudes, and peer relationships, will increase their well-being and social competence (Carter et al., 2014). Additionally, adult facilitators, peer networks, and peer interaction to promote social interaction among the youth population can increase the quality of life for youth with ASD (Hochman, Carter, BottemaCeutel, Harvey, & Gustafson, 2015). Implementation of the comprehensive approach should be utilized cautiously due to the evidence supporting a specialized population (youth with ASD). Law, Anaby, Imms, Teplicky, & Turner (2015) researched the effectiveness of an environment-based intervention to improve participation of youth with physical disabilities in YOUTH IN AGRICULTURE 10 leisure activities. The youth were between the ages of 12 and 18 and completed the Childrens Assessment of Participation and Enjoyment (CAPE), the Canadian Occupational Performance Measure (COPM), and the KidScreen-27 (Law et al., 2015). The youth established three leisure goals and worked with occupational therapists for 12 weeks to reach the established goals (Law et al., 2015). The occupational therapist worked with the youth on identifying environmental barriers and supports to their leisure participation (Law et al., 2015). There were multiple environmental barriers for all established goals; however, for the purpose of this study, only one environmental barrier was focused on during treatment in correspondence to the goal (Law et al., 2015). Based on the COPM, the ratings on performance increased during the intervention phase indicating that environment-based interventions effectively promoted participation in leisure activities amongst youth with physical disabilities and the youth self-rated performance improved amongst all goals. The youth were able to identify supports (positive attitudes and accessible transportation/buildings) and barriers (lack of funding sources, resources, programs, and social connections) within the environments which contributed to the success of the interventions (Law et al., 2015). The youth developed critical thinking skills that carried over into their daily routine promoting independence (Law et al., 2015). These findings support the importance of occupational therapists applying environment-based interventions into daily practice to increase leisure participation and quality of life for individuals with disabilities. School and community-based programs can adapt the environment utilizing universal design to increase participation for all individuals. To increase community participation and quality of life of individuals with disabilities, a program should take into consideration barriers and implement meaningful interactions between peers. The Youth in Agriculture presentation will include resources from AgrAbility and FFA YOUTH IN AGRICULTURE 11 to educate the youth population and encourage peer relationships. It is important for individuals with and without disabilities to develop social relationships and physical health, which are predictors of life satisfaction in the future (Law et al., 2004). The purpose of this doctoral capstone was to provide education and resources to FFA teachers, members, and agriculture students in hopes to increase awareness, accessibility, and life satisfaction of youth with disabilities interested/active in agriculture. Theoretical Framework The Project Triangle Model and The Intergroup Contact Theory will be used to guide the process of the DCE. Project Triangle Model The Project Triangle Model will guide professional reasoning during the DCE because there are multiple projects the student will complete other than the youth in agriculture. This model guides an individual through various steps to develop a program and allows individuals to research for best evidence and uses theories to develop a purpose (Bonnel & Smith, 2017). The review of evidence was conducted during the literature review to guide the purpose of the DCE. It was important to identify methods and outcomes for the program and recognize the contexts/resources (Bonnel & Smith, 2017). This model will allow the student to stay task oriented and guide the different steps required throughout the DCE while completing multiple advocacy projects. Intergroup Contact Theory The Intergroup Contact Theory will be used to guide clinical reasoning through the DCE. This theory is about the positive effects of intergroup contact to reduce prejudice that is driven by four components: equal group status within the situation, common goals, intergroup YOUTH IN AGRICULTURE 12 cooperation, and the support of authorities, law, or custom (Pettigrew, 1998). The term, equal status, refers to the groups feelings of expectations and perceptions and that they are equal during a situation (Pettigrew, 1998). Common goals aim to reduce prejudice through an active goal, and intergroup cooperation is focused on the individuals that work together towards the common goal (Pettigrew, 1998). The support of authorities, law, or custom establishes positive supportive contact to reduce prejudice (Pettigrew, 1998). The four key components support optimal contact and must provide friendship potential, defined as opportunity that implies close interaction that would make self-disclosure and other friendship-developing mechanisms (Pettigrew, 1998, p.80). Through this DCE, a program will be developed that focuses on educating youth in agriculture about various disabilities and the importance of viewing individuals as not disabled but as a person interested in agriculture. The program will promote equal group status by creating common goals for members and educators through participating in peer mentoring, engaging in hands-on-activities, while promoting community engagement. Individuals will engage in intergroup cooperation through peer mentoring activities. The community support will develop following the youths involvement in community participation. Screening & Evaluation Needs Assessment Results An informal needs assessment was completed with the National AgrAbility staff and various Indiana high school agriculture (ag) educators, which consisted of pure qualitative interviews and independent research on the provided AgrAbility curriculums. Pure qualitative interviews are unstructured interviews that collect data and provides the opportunity to build rapport between the individuals participating (Maxwell & Loomis, 2003). This type of YOUTH IN AGRICULTURE 13 interview is casual, unstructured, open-ended, and exploratory, which allows the researcher to gather all information regarding the topic, therefore eliminating a narrow focus (Maxwell & Loomis, 2003). The following information was collected from the unstructured interview and independent research. The NAP had already completed initial research on disability awareness within the youth population and collected data on educational standards required in agriculture classes. The NAP developed an assistive technology curriculum for rural youth, which consisted of videos, presentations, and a guide for agriculture educator (Breaking New Ground Resource Center, 2009). Curriculum topics included work practices in agriculture, assistive technology, and disability awareness (Breaking New Ground Resource Center, 2009). The resources were sent to agriculture educators in 2009 and are now available on the AgrAbility website. Due to the length of time since the materials were sent to agriculture educators, depicts a need to increase awareness of disabilities in the youth population and advocate about the youth curriculum resources. Another resource offered to the youth population through the Indiana AgrAbility Project is the Bridging Horizons Contest. Through unstructured interviews, it was found that there are a declining number of participants in this program, so there is a need to advocate about this opportunity. Following the unstructured interviews and independent research, there were three needs that were identified from the assessment: the need of disability awareness in the youth population, the need for increased awareness of the Bridging Horizons Contest, and the need to increase social and community participation for individuals, with and without disabilities interested/active in agriculture. These three needs will be addressed throughout the DCE project. Specifically, the following goals have been established: presentations given to three Jr./Sr. high YOUTH IN AGRICULTURE 14 schools agriculture classes regarding disability awareness within agriculture; three youth, with disabilities active in agriculture, reached and attending the 2019 AgrAbility National Training Workshop (NTW); contribute three ideas and/or resources to the AgrAbility youth coordinator to enhance youth involvement in the AgrAbility Project. Refer to Appendix A, figure 1A for the Goal Attainment Scale (GAS), which will be used to measure the outcome of each goal Occupational Therapy in Agriculture The AgrAbility program has many rehabilitative therapists that work as consultants (Umeda et al., 2017). An OT practitioner can consult for AgrAbility due to the expansion of the Americans with Disability Act (ADA) at an organization-level (Umeda et al., 2017). An occupational therapist that is consulting for a community organization shares research and expertise within their scope of practice, identifies the needs for the organization, fosters social and policy changes, and advocates for the clienteles participation (Umeda et al., 2017). Advocating for this population can be completed in a traditional and/or community setting such as with AgrAbility. There is limited research and evidence regarding OT in rural healthcare settings and in the agriculture community. In 2003 Peterson, Ramm, & Ruzicak reported that much of the agriculture population is underserved due to minimal practitioners working within the rural healthcare setting. Authors also found that this setting requires an increase in travel time and practitioners often lack education about this population (Peterson et al., 2003). Because this information is approximately 15 years old, it is important to acknowledge the lack of current research regarding this population, which demonstrates the importance of serving all populations, including the agriculture community. YOUTH IN AGRICULTURE 15 Due to the increased risk factors for disability associated to farming, there is a greater opportunity for OT practitioners to treat this population (Waite, 2015). The multiple diagnoses farmers and ranchers experience are respiratory disease, skin diseases, cancer, musculoskeletal disorders, chronic pain disorders, hearing loss, osteoarthritis, and even psychological disorders (Waite, 2015, p. 13). Additionally, psychological impairments, such as suicide and depression are arising due to the stressors associated to farming. OT is a unique profession because it emphasizes the use of a holistic approach within all populations addressing not only physical impairments but psychological deficits as well (Waite, 2015). OTs role in the agriculture setting is through the context of a cultural community (Hissong & Wilhite, 2008). The agriculture community has a deep root, which includes their sense of identity over multiple generations resulting in more than just a job and title; it is their way of life (Hissong & Wilhite, 2008). OT practitioners have the knowledge to increase a farmers ability to return to his/her agriculture job and lifestyle by performing culture-relevant interventions (Hissong & Wilhite, 2008). To assist practitioners in working with the agriculture community, the Person-Environment-Occupation-Performance (PEOP) model can be used to guide the evaluation and treatment to increase independence in their meaningful life (Hissong & Wilhite, 2008). The PEOP model will help practitioners to gain a greater understanding of the farmers identity and role before and after the injury and/or disability (Hissong & Wilhite, 2008). The University of South Dakota recognized the potential for OTs role with farmers and in 2008 implemented a course to increase awareness and knowledge regarding the agriculture population (Smallfield & Anderson, 2008). The material consisted of an introduction to agricultural occupational health, farm and ranch safety, a study of farm implements, adaptation of farm equipment for persons with disabilities, and rural behavioral health issues (Smallfield & YOUTH IN AGRICULTURE 16 Anderson, 2008, p. 371). Additionally, the students were required to spend one of the 12-week fieldwork rotations in a rural setting (Smallfield & Anderson, 2008). Through course evaluations, a common theme of positive attitudes towards this agriculture curriculum were identified, as well as, increased preparedness for working with this population during fieldwork (Smallfield & Anderson, 2008). Occupational Therapy in a Community Setting OT practitioners complete their job tasks in either a traditional or nontraditional setting (Gat & Ratzon, 2014). Typically, the traditional settings such as hospitals, skilled nursing facilities, outpatient services, and school settings have established roles for therapy staff and services are reimbursement through insurance and/or private pay (Gat & Ratzon, 2014). The non-traditional setting may not provide OT services at the site. Gat and Ratzon (2014) researched the perceptions of OT students participating in community-based fieldwork comparing the perceptions with those of students in a traditional fieldwork setting. The students in the community-based setting did not have an OT practitioner as a supervisor; however, the students in the traditional fieldwork setting had a registered OT supervisor (Gat & Ratzon, 2014). The students who completed community-based fieldwork rated their perception of responsibility, cultural competence, and personal skills much higher than the students in the traditional fieldwork setting (Gat & Ratzon, 2014). The researchers determined that community-based fieldwork requires the students to complete self-directed learning, engage with a culturally diverse population, and work with a variety of interdisciplinary teams (Gat & Ratzon, 2014). Additionally, it requires students to reflect on the OT model within the community-based organization (Gat & Ratzon, 2014). The students DCE was a community-based site as there was no occupational therapist on staff, and the student was required to use OT knowledge YOUTH IN AGRICULTURE 17 indirectly through advocacy by providing research skills, continuous quality improvement on projects, and developing disability awareness presentations. OT practitioners provide services to various levels of organizations, but also provide consultation services to community-based organizations (AOTA, 2014). The practitioners may consult regarding environment, ergonomic modifications, and compliance with the ADA (AOTA, 2014, p. S11). OT practitioners can affect the clients life, indirectly, through advocacy, which can be implemented through talking with legislators and/or providing education on disability awareness (AOTA, 2014). One role of an OT practitioner is as a community health advocate, which consists of identifying social, physical, emotional, medical, educational, and occupational needs (Scaffa & Reitz, 2013, p. 6) of the community to maximize optimal functioning and allocate for various services to meet their needs. As an advocate, it is the practitioners role to promote health and prevent disease and disability (Brownson, 2008). It is important to address health disparities in all populations to increase the quality of life for all individuals (Brownson, 2008). OT has the knowledge and experience to work in traditional and nontraditional settings, and it is important to advocate for disability awareness to increase justice and quality of life for individuals with disabilities active in agriculture. Additionally, OT has a role in the agriculture community to close the gap of health disparities for the population. This student, through the DCE, will utilize the OT process to promote disability awareness amongst the youth population in partnership with AgrAbility. YOUTH IN AGRICULTURE 18 Implementation Phase Project Objectives and Methods The purpose of the implementation phase was to deliver a presentation, Youth in Agriculture (see Appendix B for power point), that raised awareness about a variety of disabilities especially with an agricultural focus, and to further the youth populations involvement in social and community relationships. The implementation phase consisted of the following steps presentation development, communication with agriculture educators, and implementation of the presentation. Presentation development. The foundation of the presentation consisted of education and interactive activities regarding disabilities and the effect on agriculture-based work. Additionally, it was based on independent research from The Perfect Fit and the NAP curriculum Assistive Technology for Rural Youth (AgrAbility, 2019b). The supplemental material, pictures and videos, was used to provide a holistic presentation that interested the participants. OT introduction. To begin the presentation, the students definition of OT was provided with various examples. To enhance the definition of OT, a video describing assistive technology in various occupations was shown to the participants. Additionally, an interactive activity was included, which explained activity analysis while participants simulated an activity of making a sandwich. The participants learned about the number of steps taken to complete an activity and the various physical and cognitive components that are required to initiate, attend, and complete a task. The activity analysis was included to improve the participants understanding about how an OT practitioner evaluates and treats an agriculture worker with a disability, and how an OT YOUTH IN AGRICULTURE 19 practitioner may implement the use adaptive equipment. This facilitated the connection between the OT student and the role with AgrAbility. The Perfect Fit material. The content from The Perfect Fit material was utilized to guide the development of the Youth in Agriculture presentation. The Perfect Fit curriculum was established by the Purdue University Cooperative Extension Service, with the purpose of raising awareness of disabilities and explaining how to make 4H accessible for all individuals (Schnepf, Tormoehlen, & Field, 1992). The student updated the statistics from the established curriculum and added it to the Youth in Agriculture presentation. Information regarding the Americans with Disability Act (ADA) was incorporated in discussion points during the presentation to increase the participants knowledge regarding disabilities at the federal level. The disabilities included in the students presentation were based on the impairments that were discussed in the established curriculum. Additionally, the interactive activities in The Perfect Fit Material were utilized in the students presentation. The activity, Drinking Straws Galore, facilitated peer mentoring and social interactions to build the tallest or longest straw tower while simulating impairments: blindness, speech impairments, and upper extremity amputations (Schnepf et al, 1992). The activity Socks, Socks, and More Socks required students to place two pairs of socks on each hand, open a box of raisins, and take out the raisins individually. This interactive activity allowed the participants to gain a better understanding of how it may be to live with the impairments associated with muscular dystrophy, multiple sclerosis, and cerebral palsy, and CP (Schnepf et al., 1992). The activities allowed the participants to apply the education learned, and the interactive portion enhanced the participants of empathy and understanding of disabilities. YOUTH IN AGRICULTURE 20 Assistive Technology for Rural Youth material. To encourage the learning process of the targeted audience, education and visualizations were provided regarding adaptive equipment utilized in an agriculture-based setting. The Assistive Technology for Rural Youth curriculum guided the discussion of assistive technology through the definitions and pictures. Additionally, the established curriculum guided the discussion about the societal attitudes associated with disabilities and how to eliminate barriers for individuals with disabilities (Breaking New Ground Resource Center, 2009). Supplemental material. Videos that addressed societal attitudes related to disabilities were also incorporated into the presentation t. The videos depicted individuals with disabilities describing their story, which provided a different perspective of the students. The individuals in the videos described their interest and involvement in activities, which are similar to the interests and hobbies of those participating in the presentation. In hopes to facilitate the participants awareness of disabilities, the videos included peer-mentoring. Community-based project opportunity. The Youth in Agriculture presentation included information about the services the NAP provides and the students role with the NAP. Information regarding the Indiana AgrAbility Projects Bridging Horizons Contest was provided, which included education and visualizations. The purpose of this contest is to encourage youths engagement in their community (Indiana AgrAbility, 2012). The objective of the Bridging Horizons Contest is to facilitate an increase in independence for an individual or a group of individuals within the community (Indiana AgrAbility, 2012). Visualizations were provided of youth groups that participated and placed in the top three in previous Bridging Horizon Contests. Additionally, the proposal that must be submitted following the community project was discussed with a brochure of the Bridging Horizons Contest was provided to the agriculture YOUTH IN AGRICULTURE 21 educator. The topics listed above guided the development and delivery of the presentation. The presentation included various learning styles (pictures, videos, and interactive activities) to assist in maintaining the participants attention and enhancing the learning process for those involved. Communication with agriculture educators. Following the development of the presentation, an email was constructed and sent to all the agriculture educators in the state of Indiana through the Purdue list serve (email provider that includes all agriculture educators in Indiana). The email included an introduction of the student and the NAP, available youth resources from the NAP, and the opportunity for an onsite presentation. There were four agriculture educators from different Jr./Sr. high schools that responded to the student regarding the opportunity for an onsite presentation. The student then traveled and presented to four different Jr./Sr. high schools within the state of Indiana. Implementation of Presentation Approximately 239 students, grades 6th-12th, and four agriculture educators participated in the presentations. Each presentation was approximately 30-60 minutes in length depending on the duration of the class. The presentation was constructed to be approximately 45 minutes with extra time for questions and comments. For the shorter presentations (only at one school), the Drinking Straws Galore was eliminated and the multiple power point slides regarding adaptive equipment pictures were not discussed. Following the presentation, educators and students were asked to provide feedback regarding the presentation. The feedback was primarily positive such as enjoying the videos and hands-on activities with suggestions of seeing the adaptive equipment in person. Due to the sizes of adaptive equipment, it was not feasible to bring to the classrooms. YOUTH IN AGRICULTURE 22 Leadership Development Phase Through the implementation phase of the DCE project, the student developed as a professional in terms of the improvement of advocacy and program development skills. The nature of the NAP required the student to engage in self-directed learning, which facilitated leadership and professional skills. This promoted independence while completing the youth project and required the student to advocate for disability awareness. By presenting to the youth population, the student increased professional skills of leading, communicating, and advocating. The student was required to manage a classroom of approximately 20 students while delivering the Youth in Agriculture Presentation and maintaining control during the interactive activities (multiple groups of students). The student improved communication skills through various emails and phone calls with the agriculture educators, as well as, connecting with the students during the presentations. Advocacy skills were increased by learning various ways to describe and demonstrate OT, disability awareness, and adaptive equipment throughout the various presentations. Staff Development Phase The student educated the NAP staff on the purpose of OT and the possibilities that the student could provide to the organization. This was an important first step, to initiate a positive relationship with the staff to ensure the sustainability of the project. Additionally, this initiated open communication between all staff members and the student to increase the collaborative approach on various projects and increased the interest in the OT approach. Prior to implementation of the project, the student educated NAP staff and youth director on the importance of raising the youths awareness of disabilities throughout Indiana. This prompted an open discussion regarding how NAP staff and the youth coordinator could YOUTH IN AGRICULTURE 23 implement the presentation and findings in future curricula. Additionally, staff development was facilitated through the collaborative approach by the NAP staff taking time to edit the presentation and listen to feedback from the student regarding the presentations. The leadership and staff development phases provided the opportunity for the student to develop as a young professional. This phase was enhanced by research, needs assessment, and project implementation phases. Additionally, a large number of individuals learned about disabilities and they have the resources to participate in community-based programs, which may facilitate an increase in their quality of life. Discontinuation and Outcome Phase Societal Need and Impact There is a growing number of youths living and working on farms/ranches with an increasing number of injuries and deaths that occur on the farms/ranches. Additionally, there are many physical and mental disorders that limit agriculture performance in the youth, which may decrease quality of life (AgrAbility, 2019b). The student found that there was and continues to be a societal need to educate the youth population on disability awareness, safety in the agriculture industry, and advocate about assistive technology. To meet this societal need, the student developed a presentation that was given to various Jr./Sr. high school agriculture classes to expand their knowledge about disabilities and the AgrAbility projects. This presentation addressed the societal need by discussing safety precautions in agriculture and educating the youth on disabilities. Project Outcomes The GAS was utilized during the DCE to guide the implementation phase and to measure the outcome of each goal. There were three objectives for this DCE: present to three Jr./Sr. high YOUTH IN AGRICULTURE 24 schools agriculture classes regarding disability awareness within agriculture (Goal A); reach/identify three youth, with disabilities active in agriculture, to attend the 2019 AgrAbility NTW (Goal B); provide three ideas and/or resources to the AgrAbility youth coordinator to enhance youth involvement in the AgrAbility project (Goal C). See Appendix A, figure 2A for the complete GAS of Goals A, B, and C. Goal A. Presentations were given to four different Jr./Sr. high schools agriculture classes. Based on the GAS, the student scored a (+1) meaning somewhat more than expected. The expected scored for the GAS was for the student to present at three schools. This goal was completed during the implementation phase to increase awareness regarding disabilities within Agriculture. The highest score on the GAS was presenting to five different schools and was chosen based on the number of educators that responded to the initial email. Goal B. There were two youth, with disabilities active in agriculture, which attended the 2019 AgrAbility NTW. The score of this goal was (-1) meaning somewhat less than expected. The expected score was three youth that attended and the much more than expected score was five youth that attended. The maximum score of five youth was chosen due to the limited amount of grant funding to provide stipends for this population. Originally, three youth, with disabilities active in agriculture, were identified and planned to attend the 2019 AgrAbility NTW; however, approximately three weeks prior to the workshop, one youth reported not being able to attend. Even though the goal of three youth, with disabilities active in agriculture, was not reached, the student was able to identify many potential youths that may participate in the AgrAbility Project. Goal C. There were three ideas/resources given to the AgrAbility youth coordinator to enhance youth involvement in the AgrAbility Project. This score was expected based on the YOUTH IN AGRICULTURE 25 GAS. The maximum score of five ideas/resources was based on informal conversations with the site mentor and the youth director. The ideas/resources given to the coordinator consisted of the Youth in Agriculture presentation, three youths contacts (with their permission) to utilize in the future as an advocate for the population, and the youth directors participation in the youth dinner at the 2019 AgrAbility NTW. This goal was achieved following the implementation phase and was created for the sustainability of the program. The GAS was utilized to guide the project and helped the student to measure how the societal need was met. The societal need was met by providing education to many younger individuals in hopes to increase awareness about disabilities and increase the involvement of youth in the AgrAbility project. Additionally, the DCE project was developed for sustainability, which will continue to ensure the societal need is met. Project Continuation Various steps were taken to ensure the ongoing process for quality improvement of this project. The youth presentation was an initial step taken to expand services to the youth population; however, the sustainable tasks of including youth at the NTW and providing ideas/resources to the AgrAbility youth director were the key items to project continuation. The site mentors goal was to expand to the youth population by inviting them to the 2019 AgrAbility NTW and provide the individuals with a stipend from a grant. The student constructed an email regarding the opportunity, for youth with disabilities in agriculture, to apply and attend the NTW. The email was sent through the AgrAbility list serve, which is an online emailing system that has the email addresses of the SRAPs, state university extension agents, assistive technology professionals, and other health-related professionals on one email listing. This initiated multiple conversations regarding youth, with disabilities active in agriculture, across the United States YOUTH IN AGRICULTURE 26 with six applications submitted. However, only two youth with disabilities committed to attending the conference. Additionally, two typically developing youth attended conference with their parents. A youth dinner was arranged for youth (with and without disabilities), parents, student, and youth coordinator to attend and discus various routes to implement a youth section at the conference. The topics discussed during dinner were the possible funding sources available to provide stipends for youth to attend NTW and adding youth advocates to the advisory board of the NAP. All ideas discussed were documented and the youth director will incorporate the information into yearly goals for the NAP. Additionally, the youth director identified one youth with a disability and one youth without a disability to be a part of the advisory board for the NAP, which will allow the youth to voice opinions about involvement of the population in the AgrAbility projects. By getting youth on the advisory board, the youth director will be able to continue reaching out to this population and develop a youth section at the NTWs. To further the sustainability of the project, the student educated the youth director on the Youth in Agriculture presentation, which can be implemented in schools or youth-based meetings/conferences such as the National FFA Conference. The student provided the youth director with many resources: youth with disability statistics, youth disability prevalence rate in the agriculture community, benefits of youths community and social participation, and interventions to increase quality of life for youth. This information was explained to the youth director and can be utilized in the grant writing process. Providing these ideas/resources will further the process of expanding AgrAbility services to the youth population. YOUTH IN AGRICULTURE 27 Conclusion Communication The NAP staff worked independently and collaboratively with one another while interacting through written, oral, and nonverbal communication with the client, family, significant others, community, colleagues, health providers, and other professionals. Client. There were several clients that were a part of this DCE. The youth population was the primary client for the student and required various types of communication skills. Verbal communication was utilized to educate the youth on disability awareness and written communication allowed the youth to learn by reading and listening. The student was required to implement nonverbal communication by incorporating positive body language into conversations to promote a positive rapport between the student and youth. Another client during this project were the farmers, ranchers, and veterans that reached out for AgrAbilitys resources and services. In many cases, the clients family and significant other were a part of the clients recovery process. The types of communication used to evaluate and educate the client and their family/significant other was a combination of written, oral, and nonverbal. The oral communication was intended to build rapport and a meaningful relationship to make the evaluation and treatment plan as inclusive as possible. Nonverbal communication was utilized during farm visits to help the client feel comfortable and to divulge information about their life, which was done by demonstrating empathy and encouragement through body language. Written communication consisted of the document of referred equipment for the client and brochures that provide education on the adaptive equipment. Community. The local communities were primary supporters of the AgrAbility project and contributed significantly to its success. AgrAbility staff completed oral communication to YOUTH IN AGRICULTURE 28 expand the knowledge about the project to local businesses such as Rural King, Tractor Supply, local feed mills, Farm Bureau Agencies, and state university extension agents. Written communication was completed through social media posts, letters, emails, and newspapers. The student completed various forms of communication in the community by volunteering at the local Ag Day and discussed the project with various individuals. Written communication was seen by the local newspaper printing a story about the students presentation at the local middle school. Nonverbal communication was limited in this setting, but when it was implemented it focused on positive body language to facilitate meaningful conversations about the NAP. Colleagues and professionals. There were daily opportunities for the student to communicate with various NAP/SRAP staff and consulting professionals through oral and written skills. There were times the student completed oral communication with the NAP staff through informal discussions, phone calls with SRAP employees, and other health professions (OT consults for AgrAbility). The student communicated through writing, in the form of email, to many employees and health professionals who worked remotely. Nonverbal communication was utilized during face to face meetings with individuals and focused on positive body language. The various communication skills increased the students professional skills, which indirectly increased other skills: acknowledging time zones, time management skills, efficient writing skills, and confidence in communicating in various ways. Overall, the communication during the DCE was an underlying skill that promoted the development of leadership and advocacy. YOUTH IN AGRICULTURE 29 Leadership Skills The student developed various leadership skills during the DCE. This site required selfdirected learning with limited direct supervision, which required the student to take on tasks as appropriate. Prioritizing various tasks required the student to manage time wisely and reach out for assistance as needed. Through research, writing, networking, communicating, and working on various projects, the student learned leadership skills that have contributed to becoming a young professional that are transferable to other occupations. Additionally, due to this being a community setting and no occupational therapists on staff, the NAP staff looked to the student as a leader in the field of OT. This provided more opportunities for the student to participate in various tasks as it is a focus of the NAP to be inclusive of other disciplines and professionals. Weekly staff meetings. The student participated in weekly NAP staff meetings, which lasted approximately two hours. The meetings consisted of each person giving an update about their project that was being completed. Participation in the meetings improved this students confidence because the student was able to work collaboratively with other students and provide feedback to improve the quality of all projects facilitating good communication and problemsolving skills. Presentations to occupational therapy programs. The student presented to approximately 90 OT students at two different universities in the state of Indiana. The presentation consisted of bridging the gap between health professionals and the NAP. The student advocated about an occupational therapists role within the agriculture community, and how a therapist can reach out to the NAP as a resource for a client. Through the process of this presentation, the student refined the skills of communication, research, and advocacy. YOUTH IN AGRICULTURE 30 Farm shows and agriculture conferences. The NAP attended various farm machinery shows and agriculture-based conferences throughout the Midwest. The student assisted in managing the booths at various shows and conferences, which increased communication and advocacy skills. While working at the AgrAbility booth, the student was required to be knowledgeable of the services the NAP provided and delivered this information in an efficient manner. Additionally, an elevator speech about OT and the students application to the NAP was provided to individuals that inquired while visiting the booth. During the 2019 Indiana Horticulture Congress, the student partnered with the AgrAbility Assistive Technology Specialist to deliver a presentation, Perpetuate Your Season Despite Age or Mobility. The student provided education and visuals regarding musculoskeletal injuries associated to horticulture and safe body mechanics to increase safety during the occupation. Safety training meetings. The student presented at the Purdue Agriculture Research Farm yearly safety trainings. The OT student utilized background information from various biomechanics courses to develop a musculoskeletal presentation. This required the student to provide education, visuals, and demonstrate safe ergonomics and body mechanics to prevent musculoskeletal injuries in agriculture-based work. The opportunity allowed the student to increase advocacy, communication skills, and networking. Contribution to NAP resources. Increased research and writing skills were developed through contribution to the Low Vision Plowshare and Conducting Agriculture Worksite Assessments: 4th Edition. The Low Vision Plowshare was in the process of being revised from a prior version and required the student to use OT knowledge and research skills to assist in editing. This document discussed adaptive equipment that individuals with low vision can incorporate into their daily work on the farm. Additionally, the student collaborated on the YOUTH IN AGRICULTURE 31 Conducting Agriculture Worksite Assessments: 4th edition by analyzing the material to ensure it was inclusive of various disciplines including OT. This assessment is a guide for health professionals that may conduct a work-site assessment on the farm and/or ranch. NTW. The student participated in educational sessions and coordinated meetings at the 2019 AgrAbility NTW. Attendance at various sessions allowed the student to grow as a professional by increasing awareness of other disciplines and organizations that assist individuals with disabilities. The student organized a breakfast for OT practitioners, that attended NTW, to provide a networking opportunity. Another task the student was challenged with consisted of inviting youth with disabilities to attend the conference. The student connected with three youth and their parents who attended the conference and set up a dinner for all youth and parents to attend. This allowed the peers to interact and learn more about one another and provided an opportunity for the NAP to find advocates for their youth curriculum. The opportunity allowed the student to organize and lead a group meeting, as well as, communicate to individuals aged 715 years old. An additional task that the student took on was the development of continuing education units (CEU) for OT practitioners in attendance at NTW. The student researched and reached out to an occupational therapist regarding (CEU) requirements for the state of Nebraska. Following the research, the student compiled a packet: information and directions for CEUs, tracking sheet with OT justification, presenter biographies, and signed certificate. American Occupational Therapy Association annual conference and expo. The NAP provided financial support for the student to attend the 2019 American Occupational Therapy Association (AOTA) Annual Conference and Expo to set up, execute, and tear down an AgrAbility booth in the expo hall. This allowed the student to advocate about OT in the agriculture setting and provide resources other therapists could refer to. The student collected YOUTH IN AGRICULTURE 32 demographic data of the professional networking event and provided it to the NAP project coordinator. Additionally, the student organized, packed, and shipped all required booth materials for the conference. This opportunity allowed the student to experience management skills such as leading, advocacy, and planning an event. Self-directed learning. Each NAP staff member completed independent work and there were various roles that make it a successful organization. Everyone has specific responsibilities that require independent and collaborate work. All staff are treated equally even though job titles and responsibilities may differ from one another. This atmosphere has allowed the student to develop leadership skills that are transferrable to other professional settings. The leadership skills consist of taking initiative on various tasks, researching prior to asking questions, and prioritizing tasks. Additionally, the student developed a networking foundation that is supportive of future work. The NAP office was in a different building due to renovations resulting in the site mentors office being located on a different floor in the building. This required the site mentor and student to develop a professional relationship that required meeting each week to discuss the progress of the DCE. Additionally, the student worked in the same office as other NAP employees, which allowed the opportunity for assistance and resources as needed. Advocacy Skills The Occupational Therapy Practice Framework: Domain & Process 3rd Edition (2014) describes advocacy as promoting occupational justice and empowering the client. Advocacy supports the client in their health and wellness to participate in occupations and facilitate an increase in healthy occupational performance (AOTA, 2014). The students primary focus during the DCE was advocacy, which consisted of advocating for OT, the youth population, and the NAP. YOUTH IN AGRICULTURE 33 OT. The student advocated for OT within this community-based setting due to the NAP having limited interaction with the OT profession. The student became proficient with an elevator speech about OT and the students purpose in this setting. Additionally, the student advocated to occupational therapists and students about their role within the agriculture community. By advocating, it allowed many individuals to learn about the purpose of OT and the widespread populations and settings that can be reached. Youth population. Advocacy was utilized to address occupational justice within this population. The student was passionate about advocating for disability awareness within the youth population and raise awareness about safety in an agriculture-based program. Many times, young individuals raised on the farm are not educated on the risks of agriculture, so the Youth in Agriculture presentation addressed occupational justice to ensure individuals have knowledge of risk for injuries in agriculture. National AgrAbility Project. The student utilized advocacy skills during the DCE to promote occupational participation for clients of the NAP organization. This consisted of engaging in therapeutic use of self to facilitate the clients engagement in meaningful occupations through the use of assistive technology. Additionally, this required advocating for OT by writing justifications for the recommended assistive technology, and sending the referrals to vocational rehabilitation workers, which provided finances for the technology required. Advocating for the client, initiated self-advocacy within the client and assisted in engaging the client in meaningful occupations and increasing quality of life. Advocacy was utilized during the entire process of the DCE and increased this students leadership skills. This allowed the student to be proactive about addressing occupational justice in different populations, which transferred into the clients self-advocacy skills. This skill had a YOUTH IN AGRICULTURE ripple effect, which started with the student, transferred to the multiple clients, and continued into the community. 34 YOUTH IN AGRICULTURE 35 References AgrAbility. (2019a). About AgrAbility. Retrieved from http://www.agrability.org/about/. AgrAbility. (2019b). Youth. Retrieved from http://www.agrability.org/resources/youth/. American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain & Process 3rd edition. The American Journal of Occupational Therapy, 68(Supplement 1), S1-S48. Anaby, D., Law, M., Coster, W., Bedell, G., Khetani, M., Avery, L., & Teplicky, R. (2014). The mediation role of the environment in explaining participation of children and youth with and without disabilities across home, school, and community. Archives of Physical Medicine and Rehabilitation, 95(5), 908-917. Bonnel, W., &Smith, K. (2017). Proposal writing for clinical nursing and DNP projects. Springer Publishing Company. Bedell, G., Coster, W., Law, M., Liljenquist, K., Kao, Y. C., Teplicky, R., & Khetani, M. A. (2013). Community participation, supports, and barriers of school-age children with and without disabilities. Archives of physical medicine and rehabilitation, 94(2), 315-323. Breaking New Ground Resource Center. (2009). Assistive technology for rural youth. [PDF File]. Retrieved from http://www.agrability.org/wpcontent/uploads/2015/11/curriculum_1-24-14.pdf. Brownson, C. A. (2008). Occupational therapy services in the promotion of health and the prevention of disease and disability. The American Journal of Occupational Therapy, 62(6), 694. Bureau of Labor Statistics. (2018). National census of fatal occupational injuries in 2017. [PDF YOUTH IN AGRICULTURE 36 file]. U.S. Department of Labor. Retrieved from https://www.bls.gov/news.release/pdf/cfoi.pdf/. Carter, E., W., Common, E. A., Srechovic, M. A., Huber H. B., Bottema-Beutel, K., Gustafson, J. R., & Hume, K. (2014). Promoting social competence and peer relationships for adolescents with autism spectrum disorders. Remedial and Special Education, 35(2), 91101. Carter, E. W., Biggs, E. E., & Blustein, C. L. (2016). Relationships matter: Addressing stigma among children and youth with intellectual disabilities and their peers. Intellectual Disability and Stigma: Stepping Out from the Margins (pp.149-164). Palgrave Macmillan, London. FFA. (2018). Our membership. Retrieved from https://www.ffa.org/our-membership/. Gat, S. & Ratzon, N. Z. (2014). Comparison of occupational therapy students perceived skills after traditional and nontraditional fieldwork. American Journal of Occupational Therapy, 68, e47-e54. Hissong, A. N. Wilhite, C. (2008). Occupational therapys role with farmers with disabilities or disease: Understanding the cultural factor of farming as a way of life. OT Practice, 13(13), 1-8. Hochman, J. M., Carter, E. W., Bottema-Beutel, K., Harvey, M. N., & Gustafson, J. R. (2015). Efficacy of peer networks to increase social connections among high school students with and without autism spectrum disorder. Exceptional Children, 82(1), 96-116. Indiana AgrAbility. (2012). Bridging horizons community service contest. Retrieved from https://engineering.purdue.edu/~bng/horizons.php. Keith, J. M., Bennetto, L., & Rogge, R. D. (2015). The relationship between contact and YOUTH IN AGRICULTURE 37 attitudes: Reducing prejudice toward individuals with intellectual and developmental disabilities. Research in developmental disabilities, 47, 14-26. Law, M., Anaby, D., Imms, C., Teplicky, R., & Turner, L. (2015). Improving the participation of youth with physical disabilities in community activities: An interrupted time series design. Australian Occupational Therapy Journal, 62(2), 105-115. Law, M., Finkelman, S., Hurley, P., Rosenbaum, P., King, S., King, G., & Hanna, S. (2004). Participation of children with physical disabilities: Relationships with diagnosis, physical function, and demographic variables. Scandinavian Journal of Occupational Therapy, 11, 156-162. Maxwell, J. A. & Loomis, D. M. (2003). Mixed methods design: An alternative approach. Handbook of mixed methods in social and behavioral research, 1, 241-272. Miller, C. D. & Aherin, R. A. (2018). The prevalence of disabilities in the U.S. farm population. Journal of Agricultural Safety and Health, 24(4), 243-260. National Childrens Center for Rural and Agricultural Health Safety. (2017). 2017 fact sheet: Childhood agricultural injuries in the U.S. [PDF file]. Retrieved from https://www.marshfieldresearch.org/Media/Default/NFMC/PDFs/2017%20Child%20Ag %20Injury%20Fact%20Sheet.pdf. Peterson, C., Ramm, K., & Ruzicka, H. (2003). Occupational therapists in rural healthcare: A jack of all trades. Occupational Therapy in Health Care, 17(1), 55-62. Pettigrew, T. F. (1988). Intergroup contact theory. Annual Review of Psychology, 49(1), 65-85. Peterson, C., Ramm, K., & Ruzicka, H. (2003). Occupational therapists in rural healthcare: A jack of all trades. Occupational Therapy in Health Care, 17(1), 55-62. YOUTH IN AGRICULTURE 38 Scaffa, M. E., & Reitz, S. M. (2013). Occupational therapy community-based practice settings. FA Davis. Schnepf, G. W., Tormoehlen, R. L, Field, W. E. (1992). A perfect Fit. Purdue University Cooperative Extension Service. West Lafayette, IN: Purdue University. Smallfield, S. & Anderson, A. J. (2008). Addressing agricultural issues in health care education: An occupational therapy curriculum program description. The Journal of Rural Health, 244), 369-374. Spagnolo, A. B., Murphy, A. A., & Libera, L. A. (2008). Reducing stigma by meeting and learning from people with mental illness. Psychiatric rehabilitation journal, 31(3), 186193. Tal, C., Mannarini, T., & Rochira, A. (2014). Sense of community and community participation: A meta-analytic review. Social indicators research, 117(1), 1-28. Umeda, C. J., Fogelberg, D. J., Jirikowic, T., Pitonyak, J.S., Mroz, T. M., & Ideishi, R.I. (2017). Expanding the implementation of the americans with disabilities act for populations with intellectual and developmental disabilities: The role of organization-level occupational therapy consultation. American Journal of Occupational Therapy, 71(4), 71040900107104090010p6. United States Department of Agriculture. (2018). Farms and Land in Farms. [PDF file]. Retrieved from https://downloads.usda.library.cornell.edu/usdaesmis/files/5712m6524/3j333500g/ht24wn24x/FarmLandIn-02-16-2018.pdf. Waite, A. (2015). A growing opportunity: OTs role helping farmers and ranchers. OT Practice, 12-16. YOUTH IN AGRICULTURE 39 Appendix A Figures of the Goal Attainment Scale Success Goal Goal Goal Level of Predicted Attainment Number of Jr/Sr High Schools Agriculture Classes Reached to Give Presentation Regarding Disability Awareness within Agriculture Number of Youth with Disabilities Active in Agriculture Reached and Attending the 2019 AgrAbility National Training Workshop (NTW) Contribution of ideas and/or resources to the AgrAbility youth coordinator to enhance youth involvement in the AgrAbility Project Much Less Than Expected -2 Somewhat Less Than Expected -1 Expected Presentation Given to 1/5 Jr/Sr High Schools Agriculture Classes Presentation Given to 2/5 Jr/Sr High Schools Agriculture Classes Presentation Given to 3/5 Jr/Sr High Schools Agriculture Classes Presentation Given to 4/5 Jr/Sr High Schools Agriculture Classes Presentation Given to 5/5 Jr/Sr High Schools Agriculture Classes 1 Youth Identified and Attending the 2019 AgrAbility NTW 2 Youth Identified and Attending the 2019 AgrAbility NTW 3 Youth Identified and Attending the 2019 AgrAbility NTW 4 Youth Identified and Attending the 2019 AgrAbility NTW 5 Youth Identified and Attending the 2019 AgrAbility NTW 1 idea and/or resources given to the AgrAbility youth coordinator 2 ideas and/or resources given to the AgrAbility youth coordinator 3 ideas and/or resources given to the AgrAbility youth coordinator 4 ideas and/or resources given to the AgrAbility youth coordinator 5 ideas and/or resources given to the AgrAbility youth coordinator Somewhat More Than Expected +1 Much More Than Expected +2 Figure 1A. Goal Attainment Scale. Original GAS that was used to guide the implementation and discontinuation phase of the DCE. Success Goal Goal Goal Level of Predicted Attainment Number of Jr/Sr High Schools Agriculture Classes Reached to Give Presentation Regarding Disability Awareness within Agriculture Number of Youth with Disabilities Active in Agriculture Reached and Attending the 2019 AgrAbility National Training Workshop (NTW) Contribution of ideas and/or resources to the AgrAbility youth coordinator to enhance youth involvement in the AgrAbility Project Much Less Than Expected -2 Somewhat Less Than Expected -1 Expected Presentation Given to 1/5 Jr/Sr High Schools Agriculture Classes Presentation Given to 2/5 Jr/Sr High Schools Agriculture Classes Presentation Given to 3/5 Jr/Sr High Schools 1 Youth Identified and Attending the 2019 AgrAbility NTW 2 Youth Identified and Attending the 2019 AgrAbility NTW 3 Youth Identified and Attending the 2019 1 idea and/or resources given to the AgrAbility youth coordinator 2 ideas and/or resources given to the AgrAbility youth coordinator 3 ideas and/or resources given to the YOUTH IN AGRICULTURE Somewhat More Than Expected +1 Much More Than Expected +2 40 Agriculture Classes AgrAbility NTW Presentation Given to 4/5 Jr/Sr High Schools Agriculture Classes Presentation Given to 5/5 Jr/Sr High Schools Agriculture Classes 4 Youth Identified and Attending the 2019 AgrAbility NTW AgrAbility youth coordinator 4 ideas and/or resources given to the AgrAbility youth coordinator 5 Youth Identified and Attending the 2019 AgrAbility NTW 5 ideas and/or resources given to the AgrAbility youth coordinator Figure 2B. A complete GAS that exhibits the outcomes of the DCE project. YOUTH IN AGRICULTURE 41 Appendix B Youth in Agriculture Power Point YOUTH IN AGRICULTURE 42 YOUTH IN AGRICULTURE 43 YOUTH IN AGRICULTURE 44  ...

... A Retrospective Study of Characteristics Influencing Successful Completion of Post-Stroke Driver Rehabilitation Program Lesly Solares, Brittany Finigan, Hanna Elliott, Brooke Householder, and Hannah Klemp December, 2019 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Lori Breeden, EdD, OTR A Research Project Entitled A Retrospective Study of Characteristics Influencing Successful Completion of PostStroke Driver Rehabilitation Program Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Lesly Solares, Brittany Finigan, Hanna Elliott, Brooke Householder, and Hannah Klemp Approved by: Lori Breeden EdD, OTR Date Beth Ann Walker PhD, OTR Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date POST-STROKE DRIVING REHABILITATION 1 A Retrospective Study of Characteristics Influencing Successful Completion of Post-Stroke Driver Rehabilitation Program Brittany Finigan, Lesly Solares, Hanna Elliott, Brooke Householder, and Hannah Klemp University of Indianapolis POST-STROKE DRIVING REHABILITATION 2 Abstract Background: Researchers completed a retrospective analysis of driving evaluations in a driverretraining program post diagnosis of cerebrovascular accident (CVA). The purpose of the research was to determine predictors for a successful return to driving outcomes post-stroke (age 17 years or older). Method: Data from 41 de-identified charts (23 females; 18 males) of individuals with a diagnosis of a CVA, were collected from a driver training program. Researchers used a mixedmethods approach to analyze data comparing those who were cleared to return to driving and those who were not. Researchers compared factors between successful and unsuccessful groups using Mann Whitney U. Therapist narratives were analyzed thematically. Results: Of the 41 charts examined, 23 were cleared, and 18 failed to return to driving following evaluation. Quantitative results indicate that standardized assessments, client factors, and behindthe-wheel (BTW) factors were significantly higher for clients who were able to return to driving post-CVA. Thematic analysis revealed two themes: Insight and family support both contributed to a successful return to driving following stroke. Conclusion: A persons fitness to return to driving post-CVA may be guided by their independence with ADLs and IADLs, insight into deficits, ability to compensate for deficits, performance on standardized and BTW assessments, and the clinical expertise of the CDRS. The therapists narratives indicated ADL and IADL were important factors, however, specific IADL were not consistently scored during evaluations. Therapists should evaluate specific IADL skills using a standardized assessment to be consistent in determining readiness to drive. Keywords: driving, CVA, adults, stroke, driving rehabilitation POST-STROKE DRIVING REHABILITATION 3 A Retrospective Study of Characteristics Influencing Successful Completion of Post-Stroke Driver Rehabilitation Program According to the Center for Disease Control and Prevention (CDC), stroke is a leading cause of serious long-term disability that presents with varying degrees of physical and cognitive deficits (CDC, 2017). Residual deficits from a new stroke can affect a persons independence in daily life including the ability to operate a vehicle. Deficits that present in an individual after a stroke depend on the type of stroke and the site of the brain it occurred (Devos et al., 2014). Significant predictors for return to driving at one year after stroke included sex, motor deficits, and stroke severity at seven days post-stroke (Jee et al., 2018). Driving is an instrumental activity of daily living (IADL) that a person depends on to support endeavors at home and in the community (American Occupational Therapy Association [AOTA], 2014). Driving supports engagement in various occupations including driving to work, purchasing groceries, and attending social gatherings (Dickerson, 2014; Gibbons et al., 2017; Chihuri et al., 2016; Stav, 2012; Stineman et al., 2016). Driving is a complex task requiring significant motor, visual and cognitive skills including divided attention, judgment, reaction time, executive function, and visual scanning on-the-road (Devos et al., 2014; Park & Jung, 2015). It is important to determine the factors associated with retiring from driving given that it can limit a persons social interactions and community involvement which can negatively impact an individual's quality of life and lifestyle. The risk of stroke increases with age and is the most common reason adults are recommended to cease driving (Dickerson, 2014; Stav, 2012). Driving rehabilitation programs consist of a combination of clinical screening and behind the wheel (BTW) assessments. These assessments can be on-the-road or simulated to test an individuals ability to operate a vehicle. Behind the wheel assessments can be expensive and time-consuming (Dickerson et al., 2011). POST-STROKE DRIVING REHABILITATION 4 The Trails Making Test (TMT) is commonly used by occupational therapy practitioners, CDRS because it is cost-efficient, quick, and easy to administer for assessing an individuals executive function, visual-perceptual, and visual motor skills (Classen et al., 2013). The TMT consists of two parts: Trails A and Trails B. The Trails B test is most often used because it is considered to be a reliable predictor of failing on-the-road assessments and with determining fitness to drive (Classen et al., 2013). Measurable components of the TMT-B that influence its use for predicting an individuals driving performance include visual processing speed, divided attention, problemsolving, executive function, working memory, visual scanning, and eye-hand motor control (Classen et al., 2013) Occupational therapists are responsible for ensuring people are safe to return to driving, offer resources for alternative transportation methods, advise or prepare clients for driving retirement and inform the client of potential risks in their driving performance (Slater, 2014). It is necessary for health professionals and driving rehabilitation specialists to evaluate the effectiveness of assessments and interventions used, to ensure the clients overall safety and well-being and the protection of other drivers. Researchers suggest that occupational therapists use IADL assessments to determine who may be at risk for unsafe driving (Dickerson et al., 2010; Dickerson et al., 2011). In the present study, researchers aimed to identify factors that contributed to the successful completion of a driving rehabilitation program for adults post-stroke. Researchers endeavored to answer the following research questions: What client factors contribute to the successful return to driving post-stroke? What combination of standardized tests and client factors are indicators of a successful return to driving post-stroke? POST-STROKE DRIVING REHABILITATION 5 Methods This study was a retrospective review of de-identified driving evaluations from EasterSeals Crossroads driver training program in Indianapolis, Indiana. A retrospective study includes the review data that has often been acquired for reasons other than research, such as medical records (Hess, 2004). Advantages to a retrospective study include reduced cost, preexisting data, and easier access to specific conditions (Hess, 2004). A mixed-methods approach was used. Researchers used qualitative findings to support quantitative findings. These records, from clients with a stroke diagnosis, were referred to this specific driver training program via physicians, health care professionals, family, or self-referred. An occupational therapist (OT), Certified Driving Rehabilitation Specialist (CDRS) employed at EasterSeals Crossroads redacted all identifiable information from the records. Data from these records included specific client factors including cognition, IADL performance, ADL performance, residual stroke deficits, and past medical history (PMH). Participants No human subjects participated in this research, as all data was retrieved from deidentified charts of adults 17 years and older who were clients in the EasterSeals Crossroad's Driving Rehabilitation program following a diagnosis of stroke. This retrospective study used data from closed client charts, to answer our proposed research questions (Portney & Watkins, 2015, p. 278). As no human participants were involved, this study was determined to be exempt by the Human Research Protections Program at the university. Instruments Researchers included data from the Useful Field of View (UFOV), the Optec 5000 Vision Screener, Comprehensive Trails or Trails subparts A and B as well as the occupational therapists, CDRS clinical expertise as information relevant to an individual's ability to drive. The computer POST-STROKE DRIVING REHABILITATION 6 version of the UFOV was used to measure visual processing speed and has been shown to predict driving performance in adults with strong reliability (0.884) and validity (0.735) (Edwards et al., 2005). The Optec 5000 Vision Screener measured near and far distance visual acuity, which allowed for customized test sequences and was found to have the highest validity compared to its older versions (Milburn et al., 2013). Previous researchers found lower scores on Comprehensive Trails or Trails subparts A and B correlated with driving impairments and a decline in executive function in adults (Papandonatos et al., 2015). The occupational therapist, CDRS clinical expertise was captured via the narrative that was transcribed verbatim. The narratives were qualitatively analyzed based on themes and predictive factors more likely to result in success or failure of driving. Narratives included the type of stroke, client factors such as insight, participation in leisure activities, level of independence in ADL and IADLs, and past medical history (PMH) of the client. Procedures An OT practitioner from Easterseals Crossroads de-identified clients charts before providing access to researchers. The researchers used the data obtained from these charts to correlate client factors with the successful completion or failure to complete the driver-retraining program. Client records were assigned a number, and data were collected using a Microsoft Excel spreadsheet stored on a password-protected computer in a locked office at the University of Indianapolis. All electronic data will be destroyed three years after the completion of the research project. Data collection. Researchers obtained a narrative of the on-the-road portion of the assessment for participants who successfully completed the in-clinic portion of the evaluation. Driving evaluations were reviewed on-site and transcribed into Microsoft Excel. Data included clients occupational profile, the frequency and duration of driver-retraining sessions, the POST-STROKE DRIVING REHABILITATION 7 previously identified assessments, as well as a narrative from the evaluating therapist regarding the client's potential to return to driving. An audit trail was maintained for the qualitative data to ensure trustworthiness. These discussions were transcribed and coded to eliminate any bias among researchers. Any discrepancies among researchers regarding the narrative portions of a clients chart were verified with the occupational therapist, CDRS, who was familiar with the clients record. The themes that emerged were discussed with the occupational therapist, CDRS to verify the accuracy of the analysis as member checking. Data Analysis Qualitative. Researchers analyzed the therapists narratives within the evaluation and intervention to identify themes and report "patterns within the data" (Braun & Clarke, 2006). Themes were identified using explicit or surface meanings that progressed from description to interpretation (Braun & Clarke, 2006). The identified themes were cross-referenced to ensure the validity with a CDRS from Easter Seals Crossroads. The thematic analysis included; becoming familiar with data as well as discuss terms with CDRS, generating initial codes based on consistent challenges for clients, the search for themes in the connections found between client factors and characteristics of driver training program, the review of themes, defining and naming themes, and producing reports (Braun & Clarke, 2006). Forty-one charts were arranged into categories on a Microsoft Excel spreadsheet for further evaluation offsite. The qualitative section included information about PMH, driving history, family perception, living situation, behavior observations, driving demeanor, and therapists summary of evaluation and discharge. Researchers divided charts into pass or fail to differentiate between individuals who returned to driving immediately after evaluation and those who required additional intervention or who were overall unsuccessful to return to driving. POST-STROKE DRIVING REHABILITATION 8 Researchers sorted through the data and identified important factors within the clients evaluation. Important factors within the charts were identified after in-depth discussion with the CDRS and relevant research. Following the initial review, researchers discussed the initial findings between groups to generate codes. The keywords researchers used to code the data initially included the level of independence in ADLs, IADLs, leisure, insight, cognition, and vision deficits. Themes identified were positive family support, left-sided CVA versus rightsided CVA, vision deficits, speech deficits, physical deficits, insight, independence with ADLs and IADLs, motivation, and living situation. Charts were re-analyzed and coded based on themes from the fail and pass groups. The prevalence of each theme was discussed among researchers and the top four common themes were chosen to be analyzed in greater depth. Quantitative. The statistical analysis was conducted using the SPSS Mac Version 25. Based on the qualitative analysis of the therapist narratives some descriptive categories were coded as ordinal data when consistently appearing in evaluations. Researchers assigned a number to each category (i.e. PMH, visual, speech and physical deficits, independence with ADLs/IADLs and insight) to rank items. Missing data points were coded as if the item was intact. An example of this was participants were assigned a 0 if their PMH was unremarkable or not reported by the CDRS, if they did not have any residual visual, speech or physical deficits reported, or if independence with ADLs, IADLs, and insight were not reported by CDRS. This was verified by the OT practitioner on site. Participants were assigned a 1 if they had 1-2 comorbidities, visual, speech or physical deficits were present, were not independent with ADLs/IADLs or lacked insight into their deficits. A number 2 was assigned if they had 2 or more comorbidities, were independent with ADLs/ IADLs and had insight into their deficits. POST-STROKE DRIVING REHABILITATION 9 Spearman rank-order was used to identify any relationships between variables and the successful completion of the driver-retraining program. All of the variables listed in Table 1, which contains Mann-Whitney U results, had a strong to moderate positive relationship ( p < .05) as determined by Spearman rank-order, with return to driving. Researchers tested for normality of the data using the Kolmogorov-Smirnov test. After determining that the data was not normally distributed, researchers further analyzed the variables using the Mann-Whitney U to determine statistical significance between groups that did or did not successfully return to driving. Researchers identified statistically significant variables from clinical assessment scores and BTW performance, these are shown in Table 1. Results The 41 charts analyzed included information about 23 females and 18 males who ranged in age from 17-90 years, with an average age of 61. However, the individuals ages ranged from 17- 90 years. Of the 41 charts analyzed, 18 individuals returned to driving after the initial evaluation and nine were recommended for additional on-the-road training to ensure safety BTW and to learn how to use adaptive equipment or compensate for residual deficits post-stroke. Seven out of nine individuals who received additional on-the-road training were cleared to drive following the intervention. Qualitative Analysis revealed two themes as influential in determining return to driving: family support, and insight. Narratives that indicated these factors to be positive were common for individuals who were able to successfully return to driving. Family support. Family support included statements of the family perception of the clients driving ability, as well as statements of positive support related to the individuals recovery from stroke. One example within the documentation that demonstrated family support POST-STROKE DRIVING REHABILITATION 10 included, Sister states she doesnt have any concerns of him returning to driving. This quotation revealed that the family was aware of the clients abilities and purpose of the driving evaluation. The quote, Daughter is supportive of her dads recovery. She feels he is functioning very near baseline and that family feels (participant) is able to return to driving without difficulty, showed the family was aware that the patient was close to baseline, but had residual deficits post-stroke which could have affected the safe return to driving. An additional quotation to support this theme included Family feels that the client is capable of resuming driving with the visual field cut. Ct is very receptive to the process of determining safety and feels she is compensating very well. This indicated the familys support and confidence in the clients ability to overcome deficits and demonstrate appropriate awareness of their capabilities. Insight. Insight was revealed as the drivers' ability to understand their capabilities, deficits, and anticipate any issues they may have with driving. An individual was considered to have insight if they were aware of their deficits, demonstrated safety awareness, understood the need for driving retraining, showed the ability to learn or compensate for their deficits or were receptive to feedback. The following statements from the therapist narratives describe an individuals awareness of their deficits: Demonstrated insight into her vision deficits by providing some appropriate compensatory strategies. An example of safety awareness from the documentation stated, Offered insight and cautious approaches she has for living alone. This indicated that the individual, who successfully returned to driving, was also able to complete IADL tasks such as meal preparation, laundry, financial management and medication management safely at home. A statement that demonstrated understanding of the purpose for the driving evaluation was, Insightful about the reason that she is here for this evaluation, which reflected the individuals understanding of the impact of their condition on driving performance. Client POST-STROKE DRIVING REHABILITATION 11 insight is important because certain types of strokes can result in anosognosia, a condition characterized by an unawareness about their deficits. The following quote describes an individuals ability to learn or compensate for deficits: Client's insight and ability to learn appear functional. The ability to learn new skills and safe driving techniques increased the client's ability to safely return to driving following training. A statement which exemplifies receptive to feedback was: Open to all suggestions that will make his return to driving safer and more efficient for ct. Individuals with insight were receptive to the therapists recommendations to improve their driving performance and increase safety on-the-road. Quantitative Spearman rank-order was used to identify variables that had a relationship between the pass and fail groups following the initial evaluation. Mann-Whitney U was used to identify statistically significant differences of evaluation variables between pass/fail groups because the data was not normally distributed. The results from the Mann-Whitney U were used to support qualitative findings derived from the evaluating therapist narratives. Mann-Whitney U. After determining normality, variables were further analyzed using the Mann-Whitney U (MWU), refer to Table 1 for specifics. There were significant differences between the group who returned to driving after the initial evaluation and those who were advised not to drive in the following categories: the amount of time to complete the Trails A and B, score on the CLQT, UFOV subtest 2 and 3, UFOV risk factors, UE strength, UE coordination, LE ROM, LE strength, LE coordination, ability to park, attention, decision-making when merging, speed modulation, making right and left turns, straightaways, curves, maintaining lane position, using turn signals, divided attention, scanning during driving, independence with IADL, and insight into deficits. POST-STROKE DRIVING REHABILITATION 12 Table 1 Mann Whitney U Results Category N Cleared TMT A Sec. TMT B Sec. CLQT UFOV (2) UFOV (3) UFOV Risk Factors UE Strength UE Coordination LE ROM LE Coordination Parking Attention Merge Decisions Speed Modulation Right/Left Turns Straight Away Curves Lane Position Turn Signal Divided Attention Scanning Yielding/Merge IADL 20 20 11 9 9 9 17 17 9 14 18 13 10 22 22 21 17 16 18 19 9 19 17 N Not Cleared 16 15 12 10 10 10 8 9 7 8 8 6 3 15 14 11 7 9 10 8 6 8 2 U 82 73.5 16 14 13.5 16 20.5 43.5 0 14 42 13 2 103 55 68.5 42.5 16 63 13.5 9 57 26 P<.05 Z .01 .01 .00 .01 .01 .02 .02 .04 .00 .00 .02 .00 .02 .01 .00 .01 .02 .00 .02 .00 .02 .03 .01 -2.49 -2.55 -3.18 -2.55 -2.64 -2.42 -3.26 -2.12 -3.87 -3.71 -2.27 -3.23 -2.39 -2.58 -4.28 -2.76 -2.25 -4.07 -2.42 -4.19 -2.76 -2.22 -2.50 r -0.41 -0.43 -0.66 -0.59 -0.61 -0.55 -0.65 -0.41 -0.97 -0.79 -0.45 -0.74 -0.66 -0.42 -0.71 -0.49 -0.46 -0.81 -0.46 -0.81 -0.71 -0.43 -0.56 There were significant differences between the pass and fail groups in the following categories: employment status, the amount of time to complete the Trails A, attention, alertness, speed modulation, making right and left turns, straightaways, curves, maintaining lane position, using turn signals, divided attention, scanning during driving, independence with IADL, and insight into deficits. Refer to Table 1 for complete results from the MWU. From this data, it was concluded that the following clinical assessments were valuable in determining successful return to driving post-stroke following the initial evaluation: UFOV subtest 2 and 3, UE strength, UE coordination, LE strength, LE coordination, IADL, insight. Behind the wheel factors with a p POST-STROKE DRIVING REHABILITATION 13 <.000 level of significance included: right and left turns, lane position, and divided attention all reporting. Behind the wheel factors with a p < .023, .024, and .026 level of significance respectively included: parking, curves and yield/merge. Discussion Researchers aimed to identify characteristics of individuals following a CVA who were successfully able to complete a driver rehabilitation program. The researchers findings were consistent with the literature that standardized tests, client factors, social supports, and BTW assessments related to a successful return to driving post-CVA. Qualitative Themes Family support & insight. Through a thematic analysis, researchers found that family support and insight into deficits were prevalent in charts of participants who returned to driving. A participant was considered to have insight into their deficits if he or she was aware of deficits, safety awareness, understood the reason for driving retraining, had the ability to learn or compensate for deficits, and was receptive to feedback. Family perception was defined as a familys concern with participant's return to driving, familys observation of participants compensation for deficits, family's awareness of the purpose of the evaluation, and the familys awareness of participants capability to return to driving. Family support is an important predictor for an improved health recovery (Lathem et al., 2015; Tsonuna-Hadjis et al., 2000; Wang, Kapellusch, & Garg, 2014). Lathem et al. (2015) found that people with mobility limitations receiving monetary and unpaid assistance from family members resulted in a 34% increase in odds for recovery. Similarly, Tsouna-Hadjis et al. (2000) determined there was an improvement in functional status for individuals with emotional family support. Family support also plays a role in influencing community re-integration for people recovering from a stroke. Researchers identified strong family or friend support to be as a POST-STROKE DRIVING REHABILITATION 14 predictor of successful return to work based on a comprehensive literature review (Wang, Kapellusch, & Garg, 2014). Successful return to IADLs, such as work, can indicate that a person obtains the skills required to operate a vehicle (Dickerson et al., 2011). Family can provide feedback that can inform the occupational therapist, CDRS about skills that may hinder or support an individuals return to driving, including a participant's insightfulness. Based on the two themes identified, researchers found a connection between insight and family support and the likelihood of returning to driving post-CVA. The following categories were common within insight: the participant's safety awareness, ability to receive feedback, ability to learn and understanding the purpose of the driving evaluation. Previous researchers found a correlation between self-reported insight into deficits and BTW assessments (Stapleton, Connolly & ONeil, 2012). Stapleton et al. (2012) identified a positive correlation between the scores of the Adelaide Driving Self-Efficacy Scale (ADSES) and return to driving. These researchers reported that participants cleared for driving scored higher on the ADSES. The drivers that were not cleared for return to driving initially scored themselves at a high level on ADSES but opted out of the BTW assessment (Stapleton et al., 2012). Similarly, Blane et al. (2018) found that drivers who have a lesser understanding of the high complexity of skills required for driving and lack of insight into deficits were more at risk while driving on-the-road. A persons insight is important to capture given that different types of strokes can affect this skill (Jehkonen et al., 2000). Practitioners should consider the participant's insight into deficits and the type of family support when evaluating their fitness to drive post-stroke. Quantitative Results The MWU yielded significant results between pass and fail groups for variables except PMH and ADL status between. The MWU outcomes indicated significant results between pass POST-STROKE DRIVING REHABILITATION 15 and fail groups for the following standardized assessments: Trails A and B, CLQT, Short Blessed Test, and the UFOV. Standardized assessments. Following a stroke, clients often have a decline in their cognitive function (Blane et al., 2018). For example, people who are aware they cannot attend to multiple stimuli would avoid high traffic situations (Blane et al., 2018). In the present study, researchers found that participants with insight into their deficits were more likely to return to driving because they were able to compensate for those deficits. Therefore, it is recommended that occupational therapists evaluate a clients cognition using a standardized assessment that examines insight to contribute to an understanding of a persons fitness to drive. The researchers found a significant difference between the participants score on the Trails A/B and UFOV and their successful return to driving post-stroke. Results from the study are supported by other research findings in the driving rehabilitation literature. Research shows subtests two and three from the UFOV to be significant predictors of safe on-the-road driving (Choi et al., 2014). The researchers found subtest two and three of the UFOV to be indicators of a successful return to driving post-stroke, as well as Trails A and B as significant predictors of safe BTW performance (Choi et al., 2014). It has been found that occupational therapists may use the Trails B as a cognitive predictor for on-the-road performance post-stroke (Classen et al., 2013). Behind the wheel assessment. The comprehensive driving evaluations of the present study is consistent with other driving rehabilitation programs in that it included clinical assessments and BTW assessments (Dickerson et al., 2010). Although BTW assessments have limitations, including a lack of standardization on-the-road, and psychometric properties for the BTW checklist, they are the most factual predictor to determine a clients readiness to return to driving (Devos et al., 2014). POST-STROKE DRIVING REHABILITATION 16 The results of this study indicate that independence in the factors identified in the therapist narratives may be indicative of a persons driving ability. The occupational therapist, CDRS, identified client strengths, weaknesses, and areas of further assessment. In other studies, occupational therapists determined the importance of independent driving for each participant, current level of function, and daily routine through an occupational profile (Dickerson et al., 2010). It is important to assess a clients performance in areas of ADL, and IADL. These findings are congruent with studies conducted by Dickerson et al. (2010) and Dickerson et al. (2011), which indicated that the skill required to complete IADLs can predict successful driving performance. More formalized IADL assessments, as well as those that address cognition, sensory, visual, and perceptual functions should be consistently implemented in practice as part of a driving evaluation. Conclusion Implications The results of the present study support the clinical utility of the BTW assessments, clinical expertise, and standardized assessments used by the occupational therapist, CDRS, at EasterSeals crossroads, to determine a persons ability to return to driving. Occupational therapists, CDRS should confidently offer subjective clinical expertise in addition to analyzing the clinical assessment scores to determine success with driving performance. Clinical expertise and subjective information make a valuable contribution to the overall driving evaluation. A persons readiness to return to driving post-stroke should be guided by their independence with ADLs and IADLs, insight into deficits, ability to compensate for deficits, performance on standardized assessments, and BTW assessments, along with the clinical expertise of the CDRS. The therapists notes indicated ADL and IADL were important factors, however, specific IADL were not consistently scored during evaluations. Therapists should consider evaluating specific POST-STROKE DRIVING REHABILITATION 17 clients IADL skills to be more consistent when determining if IADL performance is a positive or negative predictor for the clients readiness to return to driving. The occupational therapists, CDRS may benefit by using a standardized IADL assessment during initial evaluations to better gauge the number of training visits the individual will need to successfully complete the program. Limitations Limitations of this study include inconsistencies of evaluations and the inability to isolate specific ADL and IADL performance during analysis, leading to inconclusive results. There was a small sample size, with only 41 charts of individuals who have had a stroke evaluated by two different occupational therapists, CDRS, leading to the possibility of type 1 error. Due to the small sample size, it is difficult to generalize the findings to a population of people with a diagnosis of CVA. Recommendations The current research highlighted the importance of consistent reporting of outcomes across practitioners who specialize in driving. Access to consistent information across the client's charts would allow for a more thorough collection of data that would improve sample size and the possibility of yielding results that would be generalizable and inform practice. Within each evaluation, IADL should be consistently documented for a more accurate analysis of potential relationships between independence with IADL and driving. POST-STROKE DRIVING REHABILITATION 18 References American Occupational Therapy Association [AOTA]. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1). doi:10.5014/ajot.2014.682006 Blane, A., Lee, H., Falkmer, T., & Dukic Willstrand, T. (2018). Cognitive ability as a predictor of task demand and self-rated driving performance in post-stroke drivers Implications for self-regulation. Journal of Transport & Health, 9, 169179. doi:10.1016/j.jth.2018.01.013 Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101. doi:10.1191/1478088706qp063oa Chihuri, S., Mielenz, T. J., DiMaggio, C. J., Betz, M. E., DiGuiseppi, C., Jones, V. C., & Li, G. (2016). 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... Running Head: HOPE AND EXERCISE IN PERSONS WITH PD 1 Relationship between Hope and Exercise in Physically Active Adults with Parkinsons Disease Stephanie Combs-Miller, PT, PhD, NCS, Mindy Hartman Mayol, PhD, ACSM EP-C, Megan Chapman OTS, Ketmany Guenin, OTS, Madeline Mahoney, OTS, McKinzie Mitchell, OTS, Megan Shuret, OTS, and Jessica Simmons, OTS December, 2018 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Stephanie Combs-Miller, PT, PhD, NCS and Mindy Hartman Mayol, PhD, ACSM EP-C HOPE AND EXERCISE IN PERSONS WITH PD 2 A Research Project Entitled Relationship between Hope and Exercise in Physically Active Adults with Parkinsons Disease Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Stephanie Combs-Miller, PT, PhD, NCS, Mindy Hartman Mayol, PhD, ACSM EP-C, Megan Chapman OTS, Ketmany Guenin, OTS, Madeline Mahoney, OTS, McKinzie Mitchell, OTS, Megan Shuret, OTS, and Jessica Simmons, OTS Krannert School of Physical Therapy, Department of Kinesiology, Health & Sport Sciences, School of Occupational Therapy Approved by: Research Advisor(s) (1st Readers) Date Research Advisor(s) (1st Readers) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date HOPE AND EXERCISE IN PERSONS WITH PD 3 Abstract This study examined exercise as it relates to hope and optimism among persons with neurodegenerative diseases, such as Parkinsons disease (PD). The purposes of this study were: 1) To determine the relationships between hope, optimism, and exercise-related factors, in persons with PD and, 2) To determine if differences in levels of hope, optimism, and quality of life exist between individuals with PD who choose different primary modes of exercise. An attempt to clarify the status of literature, researchers conducted a non-experimental, prospective, cohort study with a crosssectional design that focused on exercise organizations for persons with PD that focused on noncontact boxing compared to traditional exercise. Participants participated in a single testing session, including self-report questionnaires and performance-based tests, as well as collecting demographics including exercise related variables (e.g., minutes of exercise per week, intensity, and type of exercise). Minutes of exercise per week was positively and fairly correlated with optimism. Boxers, as compared to non-boxers, were found to have higher levels of hope as well as a better perception of quality of life. The findings of this study suggest that optimism and hope levels were positively affected due to participating in exercise, in particular, for the boxers group. HOPE AND EXERCISE IN PERSONS WITH PD 4 Introduction Parkinsons disease (PD) is a neurodegenerative disease that is present in more than one million people within the United States (Baatile, Langbein, Weaver, Maloney, & Jost, 2000). The disease is expressed by signs of tremors, rigidity, postural instability, and slowed movements which are known to cause detriment to an individuals balance, mobility, and quality of life (Jankovic, 2008). In the general population of people with PD, there is an increased risk of dissatisfaction in life and with hope (Gustafsson, Nordstrom, Strahle, & Nordstrom, 2015). Hope is defined as a persons belief in their ability to achieve goals, particularly in settings where the person can influence the results through their personal strengths and skills (Rand, 2009). Optimism is defined as ones ability to maintain a positive expectation of the future (Carver, Scheier, & Segerstrom, 2010) regardless of the controllability of a situation (Rock, Steiner, Rand, & Bigatti, 2014). To date, it is not clear what factors influence hope and optimism in persons with PD. In a systematic review by Schiavon, Marchetti, Gurgel, Busnello, and Reppold (2017), researchers reported a positive correlation between perceptions of hope, quality of life, and satisfaction in individuals with chronic disease. Higher hope is identified as a protective factor in individuals facing challenges and adversities, thus, positively impacting quality of life (Aspinwall & Tedeschi, 2010; Aspinwall & MacNamara, 2005). Furthermore, healthy individuals who have higher levels of hope have been reported to possess more certainty that their goals will be reached (Snyder, Shorey, Cheavens, Pulvers, Adams, & Wiklund, 2002). The sense of determining that a goal has been met fuels the desire of hope (Snyder et al., 2002). In past research, a strong, positive relationship between hope and health-promoting lifestyles among persons with PD was found, where higher levels of hope are associated with increased positive health behaviors (Fowler, 1997). Health-promoting behaviors were defined as activities, which increased the level of an individuals well-being and produced health potential for individuals, families, communities, and societies (Fowler, 1997). HOPE AND EXERCISE IN PERSONS WITH PD 5 Researchers have determined that optimism may predict a persons thoughts, feelings, and behaviors when faced with both controllable and uncontrollable situations (Rock et al., 2014). Furthermore, those with higher optimism may not modify their behaviors when faced with these situations but instead shift their thinking about the situation at hand (Scheier, Carver, & Bridges, 1994). While hope and optimism are considered separate concepts, they are interconnected by addressing individuals beliefs about goal-related outcomes (Rand, 2009). Hope and optimism are rarely studied together; however, it is suggested that they may be associated with different outcomes depending on the controllability of the situation (Rand, 2009). For example, hope and optimism influence different goal-specific anticipations depending on if the situation is controllable or not (Rand, 2009). Hope and optimism both address ones beliefs about goal-related outcomes (Rock et al., 2014). Moreover, Rand (2009) demonstrated that hope is more advantageous when a person perceives the situation as controllable whereas optimism is more favorable in situations that one may perceive as uncontrollable. An individual with PD may perceive they have little control over their progression of the disease and the symptoms that accompany PD, in which the person may have higher levels of optimism versus hope. Arguably, if persons with PD perceive that there is a level of control through treatments offered for PD (e.g., medications, exercise, etc.), then hope may be a stronger factor for those who view treatments as a form of control over their PD symptoms. Limited studies exist in the literature that examine hope and optimism in persons within the PD population and no studies were found that examined the relationship between hope and optimism and exercise-related factors such as duration, frequency, intensity, and mode. Therefore, the research aims of this study are 1) to explore the relationships between hope/optimism and exercise-related factors (i.e., intensity, mode, minutes per week), as well as demographic/health characteristics of exercisers with PD (i.e., age, PD severity levels, months since diagnosis, Levodopa Equivalent Daily Dose [LEDD]), and 2) to determine if differences in levels of hope, optimism, and quality of life HOPE AND EXERCISE IN PERSONS WITH PD 6 exist between individuals with PD who choose different primary modes of exercise. It is postulated that relationships will be seen between hope and optimism with the aforementioned exercise-related variables as well as with age and the severity of their PD ailments. It is also hypothesized that individuals with PD who routinely participate in a non-traditional group exercise mode, specific to PD, will demonstrate higher levels of hope and optimism when compared to those who participate in more traditional exercise modes. Methods Research Design This study is a non-experimental, prospective, cohort study with a cross-sectional design. Participants A convenience sample of 100 individuals was recruited from Indianapolis area exercisebased programs for persons with PD. Inclusion criteria for this study comprised: 1) Diagnosed with idiopathic PD; 2) Exercised for a minimum of 60 minutes total per week; 3) Between the ages of 21 to 80 years of age; 4) Able to follow three-step commands; and 5) Rated in stages 1 through 4 on the Hoehn & Yahr Scale (Goetz, Poewe, Rascol, Sampaio, Stebbins, Counsell, . . . Yahr, 2004) that categorizes the progression of PD. Participants were excluded from this study if they had preexisting neurological conditions other than PD or had a history of brain surgery. Procedures Approval to conduct this research was received from the Institutional Review Board at the University of Indianapolis. Data collection for each participant occurred in a single 30 to 45-minute session where researchers reviewed and obtained informed consent, gathered demographics (age and gender), health information (months since diagnosis, LEDD), and administered questionnaires and motor assessments. The questionnaires and assessments were administered to each participant in a random order and all questionnaires, except for the MDS-UPDRS Part II, were read aloud to each HOPE AND EXERCISE IN PERSONS WITH PD 7 participant. The participants were instructed to take their anti-PD medications one hour before the testing administration began. Assessments and Questionnaires. Paper-based, self-report questionnaires and performance tests were used in this study, including the Parkinson's Disease Questionnaire (PDQ)-39 (Jenkinson, Fitzpatrick, Peto, Greenhall, & Hyman, 1997), the Adult Hope Scale (AHS) (Snyder, Harris, Anderson, Holleran, Irving, Sigmon, . . . Harney, 1991), Life Orientation Test-Revised (Scheier & Carver, 1985), and the Movement Disorders Society-Unified Parkinson Disease Rating Scale (MDS-UPDRS) subsections II and III (Goetz, Tilley, Shaftman, Stebbins, Fahn, Martinez-Martin, . . . LaPelle, 2008). Hope. The 12-item AHS (Snyder et al., 1991) measures hope by assessing two constructs: Pathways thinking (generating successful plans to meet goals) and agency (meeting goals in the past, present, and future) using an eight-point Likert-type scale (1=definitely false to 8=definitely true) with higher summed scores indicating greater levels of hope (scores range from 8 to 64) (Snyder et al., 1991). Scores for the AHS are generated by summing the four pathway subscale items with the four agency subscale items for a total hope sum while the remaining four filler items were discarded from the summation. Cronbachs alpha for hope were 0.82-0.83, respectively (Rock et al., 2014). Life Orientation Test. The eight-item Life Orientation Test is a self-report measure that includes two filler items (Scheier et al., 1994). Eight items are scored, four of the questions are worded positively and four are worded negatively (Scheier et al., 1994). The test examines a persons expectancies with positive and negative outcomes (Scheier et al., 1994). A five-point Likert scale is used to rate ones experiences ranging from 0 (strongly disagree) to 4 (strongly agree) (Scheier et al., 1994). The resulting score measures a persons degree of optimism with a higher score representing a higher level of optimism (Scheier et al., 1994). Cronbachs alpha was reported as .82 (Scheier et al., 1994). HOPE AND EXERCISE IN PERSONS WITH PD 8 Quality of Life. The PDQ-39 is a 39-item questionnaire that measures the degree of participation in activities of daily living within the last month prior to completing the study. The questionnaire consisted of a five-point ordinal scoring system (0=never to 4=always, or cannot do at all), with higher scores indicating greater disability (Jenkinson et al., 1997). The PDQ-39 examines the following constructs including: activities of daily living, attention and working memory, cognition, communication, depression, functional mobility, quality of life, social relationships, and social support (Parkinson's Disease Questionnaire-39, 2014). Cronbachs alpha for the PDQ-39 were 0.59-0.94 and the ICC was 0.67-0.87 (Goetz et al., 2004). Motor Symptoms and Activities of Daily Living. The MDS-UPDRS, a revision of the original UPDRS, was used to assess the motor signs of PD. Part II focused on motor aspects of experiences of daily living, and consists of 13 items that were answered by participants (Goetz et al., 2008). Part III consists of 18 items, including an observed examination completed by researchers that assessed motor systems associated with PD (Goetz et al., 2008). Internal consistency for each of the four subsets has been established, and Part II and Part III have a high internal consistency, with alpha levels at 0.90 and 0.93, respectively (Goetz et al., 2008). Part II is comprised of multiple questions that self-assesses an individual's activities of daily living (ADLs) (Goetz et al., 2008). In addition, a high test-retest reliability has been shown in both subsets with an ICC of 0.89 for Part II and 0.93 for Part III (Goetz et al., 2008). Scores in the UPDRS range from normal (0) to severe, with overall (4) determining Hoehn and Yahr stage based on composite findings from Part III motor examination. Hoehn and Yahr stages include: Asymptomatic (0); Unilateral involvement only (1); Bilateral involvement without impairment of balance (2); Mild to moderate involvement, some postural instability but physically independent, needs assistance to recover from pull test (3); Severe disability, still able to walk or unassisted (4); Wheelchair bound or bedridden unless aided (5) (Goetz et al., 2008). Prior to data collection the HOPE AND EXERCISE IN PERSONS WITH PD 9 student researchers were trained to score the MDS-UPDRS III using the established MDS training video and instruction from faculty. High interrater reliability was established for the group of researchers (ICC3,1 = 0.96). Data Analysis Data were assessed to determine if parametric assumptions were met, using the ShapiroWilks test for normality. Descriptive statistics were conducted and presented as medians and interquartile ranges due to non-normality of the data. All statistical analyses used IBM SPSS (23.0 Edition; SPSS Inc., Chicago, Il., USA) to answer the research aims with an alpha level of p 0.05 set for statistical significance. Spearmans rank correlation coefficient (rho, ) was used to assess relationships among variables for aim 1. A -value under .25 was considered low, a fair -value fell between .25 -.50, moderate -values fell between .50 -.75, and -values above .75 were considered strong (Portney & Watkins, 2009). For aim 2, an Independent Samples Mann-Whitney U test was used for the between group comparisons (boxing vs. non-boxing). Results In total, 100 participants (nmales = 59, nfemales = 41) with an age range from 45 to 80 (Mdn = 68.0, IQR = 10.0) were enrolled in the study. The sample consisted of 77 individuals who participated at Rock Steady Boxing (RSB) and 23 individuals who exercise with other programs or individually (non-boxers). A majority of the sample were self-reported as Caucasian/White (92%). Demographics of participants are presented in Table 1. Statistically significant differences were found between boxers and non-boxers for peak Rate of Perceived Exertion (RPE) (p < .01), age (p < .03), and MDS-UPRDS III scores (p < .047). For research aim 1, only minutes of exercise demonstrated a positive, fair correlation with optimism (=.34). All other exercise-related variables had low correlations with hope and optimism (= .10-.23). In addition, both hope and optimism had low, inverse relationships with age and LEDD as seen in Table 2. Fair, inverse correlations were seen between hope and the MDS-UPDRS II and HOPE AND EXERCISE IN PERSONS WITH PD 10 MDS-UPDRS III scores, but not with optimism. Within the mobility section of the PDQ-39, mobility was fairly and inversely related to hope ( = -.35) and optimism ( = -.28). For the emotion section of the PDQ-39, emotion was fairly and inversely related to hope ( = -.48) and optimism ( = -.39). Moreover, the relationship between hope and optimism was moderately correlated ( = .56). See Table 2 for correlations between exercise-related variables and hope and optimism. For research aim 2, the boxers demonstrated significantly higher hope scores when compared to non-boxers (U = 2.01; p = .04). More specifically, only the agency sub-construct of the AHS demonstrated a statistically significant difference between boxers and non-boxers (U = 2.66; p < .01). No significant difference was seen in optimism between boxers and non-boxers (U = 0.94; p > .05). The boxers demonstrated significantly lower scores on the PDQ-39 mobility subsection, indicating better perception of quality of life related to mobility compared to non-boxers (U = 3.02; p < .01). While the median PDQ-39 summary index was lower for boxers compared to non-boxers, this was not a significant difference (U = 1.53; p = .13). See Table 3 for correlations between hope, optimism, and quality of life between groups. Discussion For the first research aim, the hypothesis was found to be partially supported by the data, in that a fair, positive relationship between optimism and hope and minutes of exercise was demonstrated. While correlations between hope, optimism, and other variables (e.g., boxing mode, PDQ-39 items, MDS-UPDRS II/III) were present, the results indicated fair to low, inverse relationship between variables. Previous literature has shown that if persons with PD consistently exercise more than 150 minutes a week, over time, the progression of PD symptoms were less compared to those who exercised less time or not at all (Rafferty, Schmidt, Luo, Li, Marras, Davis, . . . Simuni, 2017). Moreover, it is possible that persons with PD who exercise at least 150 minutes per week may feel more optimistic than those who exercise less than 150 minutes per week due to the betterment of HOPE AND EXERCISE IN PERSONS WITH PD 11 their physical symptoms related to PD. While the relationships between exercise, hope, and optimism were low, this may be reflective of the fact that the majority of the sample routinely exercised at least 150 minutes or more per week, thus, indicating a limitation of the study. It is possible that exercising at least 150 minutes per week is a key frequency for positive feelings relating to hope and optimism. Additionally, it is assumed that positive expectations of the future, regardless of the controllability of a situation, may be mediated by a greater number of the minutes of exercise participated in per week. For the second research aim, the hypothesis was supported by the data in that there was a statistically significant difference in the hope scores between boxers and non-boxers, with boxers showing higher hope scores than non-boxers. An explanation for this finding is that persons with PD who participate in a non-contact boxing program may be more psychosocially influenced when exercising with people with similar PD severity and factors of group cohesion. In a recent study, participants in a group exercise program found the program to be free of stigma, inclusive, and welcoming as well as a safe space where they could display symptoms without fear of judgement (Sheehy, McDonough, & Zauber, 2017). According to Simpson, Haines, Lekwuwa, Wardle, and Crawford (2006), satisfaction and social support, together, were factors that were found to demonstrate less psychological stress in individuals with PD, thus, more feelings of hope and cohesion within the group can be assumed. Moreover, participating in a group exercise environment may increase ones level of hope when exercising with others who have similar symptoms and gives people confidence to overcome symptoms (Sunvisson & Eckman, 2001). A second explanation of why boxer showed higher hope scores than non-boxers may be due to the participation in a novel exercise mode (e.g., non-contact boxing) when compared to more traditional forms of group exercise. Non-contact boxing for individuals with PD is a relatively new mode of exercise and has been shown to decrease severity in physical PD-related symptoms (Combs, Diehl, Staples, Conn, Davis, Lewis, & Schaneman, 2011). It is also important to consider that by HOPE AND EXERCISE IN PERSONS WITH PD 12 participating in non-contact boxing, the boxer group may possess stronger feelings they are fighting their disease which may, in fact, provide empowerment and greater hope as it relates to redefining and rejecting stereotypes (Haslam, Jetten, Postmes, & Haslam, 2009) than compared to those who participate in other modes of exercise. Results from the PDQ-39 suggested that boxers have higher perceived quality of life as evidenced by lower scores on the mobility construct as well as the summary index of the questionnaire as compared to non-boxers. These findings are consistent with prior research in that groups, specifically focusing on exercise for persons with PD, have improved quality of life (Combs, Dyer, Chrzastowski, Didrick, McCoin, Mox, . . . Wayman, 2013; Hackney & Earhart, 2009). Short and long-term improvements in balance and gait occurred after participation in a boxing training program (Combs et al., 2011). Based on the findings by Combs and colleagues (2011), it is possible that because the non-contact boxing program incorporates agility drills and balancing exercises into their program, the boxers perceive their functional mobility as higher than non-boxers. Additionally, higher levels of hope seen in the boxer group may be attributed to the opportunity to be led by qualified trainers who are invested in the participants goals and outcomes. Wiles (2008) found that having trainers lead the classes may help to motivate the boxers to reach their goals giving the boxer group more hope as they persist in achieving their set goals. Group exercise that includes ones own personal set goals can be significantly increased by having a coaching staff (Middlekamp, van Roojen, Wolfhagen, & Steenbergen, 2016). It is also known that verbal encouragement from others can impact ones perceived quality of life (Wiles, 2008). By having verbal encouragement from both the participants and coaches alike within a group, individuals may perceive that they are better able to reach their goals than without the support and verbal encouragement. It is also important to note that the ability to self-regulate emotions on a consistent basis may be involved in creating stronger feelings of hope and optimism. Past research has shown that there HOPE AND EXERCISE IN PERSONS WITH PD 13 are two substantial moderators when looking at aspects of stress and coping, including controllability and predictability, which have been associated with more effective self-regulation and coping (Bailey, Eng, Frisch, & Snyder, 2007). In this current study, hope was measured by assessing two constructs: Pathways thinking and agency. Pathways thinking is the generation of successful plans to meet ones goals, whereas agency is the meeting of goals in the past, present, and future (Bailey et al., 2007). Bailey and colleagues (2007) also found that the agency construct was the strongest predictor of life satisfaction when compared to the pathways thinking construct. The study found it was best to examine the agency and pathway constructs separately and to analyze the interactions of hope and optimism through which individuals assess their life satisfaction (Bailey et al., 2007). Rock and colleagues (2014) found that hope was directly related to perceived controllability in the persons environment where there was a significant value for the agency of hope and exercise. In this study, it was found that the agency construct demonstrated a statistically significant difference between boxers and non-boxers, which is supported by the aforementioned studies. This postulates the notion that individuals with PD who participate in vigorous, non-contact boxing modes may demonstrate more hopeful tendencies due to their belief of perceived control over their exercise environment and, thus, advancing their own personal abilities and capacities of reaching their own health-related exercise goals. Therefore, it can be concluded that being a participant in a group exercise environment, such as non-contact boxing, and with people that are having similar life changes due to the same diagnosis, may enhance feelings of hope and optimism by having an emotional support from other group members and a controlled environment. Limitations One limitation of this study was that a majority of participants exercised more than 150 minutes per week, in which, according to Oguh, Eisenstein, Kwasny, and Simuni (2014), is the suggested amount of exercise for individuals with PD to decrease the progression of the disease which then may have led to higher levels of hope and optimism across the cohort. Another limitation HOPE AND EXERCISE IN PERSONS WITH PD 14 is that this study used a convenience sample. The participants volunteered to partake in the study, which could make a difference in hope when referring to the self-efficacy theory. Volunteering ones self to be in the study could indicate that the individual already feels efficacious about exercising and goal attainment and may be more likely to meet the goals they set for themselves and, therefore, could be deemed as more hopeful from the onset. The non-contact boxers may already have had high levels of hope thus, our data did not indicate increased levels of hope as predicted. Another limitation of the study is the restricted mode of exercise. Most participants did both boxing and individual exercise, however, the amount of exercise, type of exercise, and how often they participated in the exercise was all self-reported. Conclusion The results of this study suggest that exercising more minutes per week is fairly related to higher levels of optimism in persons with PD. Although the relationships between most exercise parameters and hope, and optimism were low, it is important to keep in mind that a majority of the sample routinely exercised at least 150 minutes or more per week. The 150 minutes of exercise per week may be the peak amount for attaining higher levels of hope and optimism. Additionally, noncontact boxing, as a multi-modal exercise program, may enhance hope more-so than traditional exercise programs for persons with PD. Recommendations for future studies include investigating the amount of exercise needed to achieve high levels of hope and optimism in people with PD. Additionally, further examination of the relationship between levels of hope and optimism in people with PD with greater variability in exercise amounts would be beneficial. HOPE AND EXERCISE IN PERSONS WITH PD 15 References Aspinwall, L.G., & MacNamara, A. (2005). Taking positive changes seriously. Cancer, 104, 25492556. Aspinwall, L. G., & Tedeschi, R. G. (2010). The value of positive psychology for health psychology: Progress and pitfalls in examining the relation of positive phenomena to health. Annals of behavioral medicine, 39(1), 4-15. Baatile, J., Langbein, W. E., Weaver, F., Maloney, C., & Jost, M. B. (2000). Effect of exercise on perceived quality of life of individuals with Parkinsons disease. Journal of Rehabilitation Research and Development, 37(5), 529-34. Bailey, T. C., Eng, W., Frisch, M. B., & Snyder, C. R. (2007). Hope and optimism as related to life satisfaction. The Journal of Positive Psychology, 2(3), 168-175. Carver, C. S., Scheier, M. F., & Segerstrom, S. C. (2010). Optimism. Clinical Psychology Review, 30, 879-889. Combs, S. A., Diehl, M. D., Chrzastowski, C., Didrick, N., McCoin, B., Mox, N., . . . Wayman, J. (2013). Community-based group exercise for persons with Parkinsons disease: A randomized controlled trial. Neurorehabilitation, 32, 117124. doi:10.3233/NRE130828 Combs, S. A., Diehl, M. D., Staples, W. H., Conn, L., Davis, K., Lewis, N., & Schaneman, K. (2011). Boxing training for patients with Parkinson disease: A case series. Physical Therapy, 91(1), 132. Fowler, S. B. (1997). Hope and a health-promoting lifestyle in persons with Parkinson's disease. Journal of Neuroscience Nursing, 29(2), 111-116. Goetz, C. G., Poewe, W., Rascol, O., Sampaio, C., Stebbins, G. T., Counsell, C., . . . Yahr, M. D. (2004). Movement Disorder Society Task Force report on the Hoehn and Yahr staging scale: Status and recommendations the Movement Disorder Society Task Force on rating scales for Parkinson's disease. Movement disorders, 19(9), 1020-1028. HOPE AND EXERCISE IN PERSONS WITH PD 16 Goetz, C. G., Tilley, B. C., Shaftman, S. R., Stebbins, G. T., Fahn, S., Martinez-Martin, P., . . . LaPelle, N. (2008). Movement Disorder Society sponsored revision of the Unified Parkinsons Disease Rating Scale (MDS-UPDRS): Scale presentation and clinometric testing results. 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Upper Saddle River, NJ: Pearson Education, Inc. Rafferty, M. R., Schmidt, P. N., Luo, S. T., Li, K., Marras, C., Davis, T. L., . . . Simuni, T. (2017). Regular exercise, quality of life, and mobility in Parkinsons disease: A longitudinal analysis of national Parkinson foundation quality improvement initiative data. Journal of Parkinson's Disease, 7(1), 193-202. Rand, K. L. (2009). Hope and optimism: Latent structures and influences on grade expectancy and academic performance. Journal of Personality and Social Psychology, 77, 231-260. doi: 10.1111/j.1467-6494.2008.005544.x Rock, E., Steiner, J., Rand, K., & Bigatti, S. (2014). Dyadic influence of hope and optimism on patient marital satisfaction among couples with advanced breast cancer. Support Care Cancer. Retrieved from: https://doi.org/10.1007/s00520-014-2209-0 Scheier, M. F., & Carver, C. S. (1985). Optimism, coping, and health: Assessment and implications of generalized outcome expectancies. Health Psychology, 4, 219-247. Scheier, M. F., Carver, C. S., & Bridges, M. W. (1994). Distinguishing optimism from neuroticism and trait anxiety, self-mastery, and self-esteem: A reevaluation of the Life Orientation Test. Journal of Personality and Social Psychology, 67(6), 1063. Schiavon, C. C., Marchetti, E., Gurgel, L. G., Busnello, F. M., & Reppold, C. T. (2017). Optimism and hope in chronic disease: A systematic review. Frontiers in Psychology, 7, 2022. Sheehy, T., McDonough, M., & Zauber, E. (2017). Social comparisons, social support, and self-perceptions in group exercise for people with Parkinson's disease. Journal of Applied Sport Psychology, 29:3, 285-303. DOI:10.1080/10413200.2016.1266711 HOPE AND EXERCISE IN PERSONS WITH PD 18 Simpson, J., Haines, K., Lekwuwa, G., Wardle, J., & Crawford, T. (2006). Social support and psychological outcome in people with Parkinsons disease: Evidence for a specific pattern of associations. British Journal of Clinical Psychology, 45, 585590. doi:10.1348/014466506X96490 Snyder, C. R., Harris, C., Anderson, J. R., Holleran, S. A., Irving, L. M., Sigmon, S. T., . . . Harney, P. (1991). The will and the ways: Development and validation of an individual-differences measure of hope. Journal of Personality and Social Psychology, 60(4), 570. Snyder, C. R., Shorey, H. S., Cheavens, J., Pulvers, K. M., Adams III, V. H., & Wiklund, C. (2002). Hope and academic success in college. Journal of Educational Psychology, 94(4), 820. Sunvisson, H., & Ekman, S. L. (2001). Environmental influences on the experiences of people with Parkinsons disease. Nursing Inquiry, 8, 4150. doi:10.1046/j.1440-1800.2001.00089.x Wiles, C. M. (2008). Physiotherapy and related activities in multiple sclerosis. Multiple Sclerosis, 14(7), 863871. HOPE AND EXERCISE IN PERSONS WITH PD 19 Table 1 Demographics, health and exercise characteristics Total Sample n=100 Median (IQR) 68.0 (10.0) 59 (59) Boxers n=77 Median (IQR) 67.0 (12.0) 48 (62.3) Non-Boxers n=23 Median (IQR) 70.0 (9.0) 11 (47.8) p .03 .24 .62 Age Male Gender, n(%) Race, n(%) White 92 (92) 70 (90.9) 22 (95.7) African 3 (3) 3 (3.9) 0 (0.0) American 1 (1) 1 (1.3) 0 (0.0) Asian 2 (2) 1 (1.3) 1 (4.3) Pacific Islander 2 (2) 2 (2.6) 0 (0.0) .06 Not Reported 65.0 (79.0) 51.0 (77.0) 86.0 (98.0) .30 Months Since Dx 11.5 (9.0) 11.0 (9.0) 12.0 (7.0) .047 MDS-UPDRS II 19.5 (19.0) 19.0 (16.0) 29.0 (23.0) .29 462.5 (396.6) 450.0 (386.88) 716.96 (475.0) MDS-UPDRS III LEDD .34 300.0 (180.0) 300.0 (150.0) Exercise 300.0 (340.0) <.01 Minutes of Ex. 15.0 (4.0) 15.0 (3.0) 14.0 (7.0) Peak RPE Note. Dx = Diagnosis; MDS-UPDRS = Movement Disorders Society-Unified Parkinson Disease Rating Scale; LEDD = Levodopa Equivalent Daily Dose; Ex.= Exercise; RPE= Rate of Perceived Exertion. *p .05. HOPE AND EXERCISE IN PERSONS WITH PD 20 Table 2 Spearman Rho Correlations () Hope Optimism Age -.07 -.06 Months Since Dx -.01 .02 MDS-UPDRS II -.24* -.19 MDS-UPDRS III -.28* -.05 LEDD -.08 -.12 Exercise Minutes of Ex. .23* .34* .11 Peak RPE .11 Boxing mode -.20* -.10 PDQ-39 Mobility -.35* -.28* Emotion -.48* -.39* Summary Index -.39* -.29* .56* Hope (Total) 1.0 Optimism .56* 1.0 Note. Dx = Diagnosis; RPE = Rate of Perceived Exertion; MDS-UPDRS = Movement Disorders Society-Unified Parkinson Disease Rating Scale; LEDD = Levodopa Equivalent Daily Dose; PDQ39 = Parkinson's Disease Questionnaire-39. *p .05. HOPE AND EXERCISE IN PERSONS WITH PD 21 Table 3 Differences between groups in hope, optimism, and quality of life Total Sample Boxers Non-Boxers n=100 n=77 n=23 Median (IQR) Median (IQR) Median (IQR) 55.0 (9.0) 56.0 (9.0) 52.0 (7.0) 28.0 (4.0) 29.0 (4.0) 27.0 (4.0) 27.0 (5.0) 28.0 (5.0) 26.0 (5.0) 19.0 (5.0) 19.0 (6.0) 18.0 (5.0) Hope Total Agency Construct Pathway Construct Optimism PDQ-39 Mobility 10.0 (22.5) 7.5 (20.0) Emotion 16.7 (20.8) 16.7 (20.8) Summary Index 16.1 (14.6) 14.2 (15.5) Note. PDQ-39 = Parkinson's Disease Questionnaire-39. *p .05. 20.0 (25.0) 16.7 (20.8) 19.9 (22.8) p .04 <.01 .25 .35 <.01 .96 .13  ...

... WOMENS EMPOWERMENT 1 Womens Empowerment in Refugee Resettlement Jamie Guangco May, 2018 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Sally Wasmuth, OTD, PhD, OTR WOMENS EMPOWERMENT 2 A Research Project Entitled Womens Empowerment in Refugee Resettlement Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Jamie Guangco OTS Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date WOMENS EMPOWERMENT 3 Abstract Over the past two decades the global population of forcibly displaced individuals has grown to 65.6 million refugees, half being women. Refugee women experience distinct challenges in balancing traditional gender roles, identity, and expectations in a new cultural context. A solution to this is a combination of practical skills training and education that will lead to a positive resettlement transition. The purpose of this Doctoral Capstone Experience is to increase the knowledge, life skills, and self-sufficiency of refugee women through occupational engagement. The theoretical model guiding this project is the Kawa River Model, which represents how barriers in our life can impact occupational performance. Refugees in this particular capstone project experienced barriers related to English proficiency, education, life skills, and awareness of resources that prevented a positive resettlement transition to America. A needs assessment was conducted with the staff at Catholic Charities, and four six-week womens empowerment groups were completed as a result. At the end of the intervention a satisfaction survey was given. Refugee women have greater confidence in their roles as a mother, wife and woman at the end of the intervention. Refugee women valued life-skills training and womens health education to mental health information, likely due to a combination of Maslows Hierarchy of Needs, religious beliefs, and the existence social support system. Refugees require efficient sexual and reproductive health education in order to understand contraceptive and family planning options. Overall, refugees of diverse backgrounds require different levels of occupational needs depending on their country of origin. WOMENS EMPOWERMENT 4 Introduction Over the past two decades the global population of forcibly displaced individuals has grown from 33.9 million in 1997 to 65.6 million in 2016, with 22.5 million being refugees (UNHCR, 2016). The term refugee was defined by the United Nations High Commissioner for Refugees in 1951 as a person who is unable or unwilling to return to their country of origin owing to a well-founded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group or political opinion. Most refugees come from urban areas and informal dwellings, with 25% coming from refugee camps. Of the 22.5 million refugees, 189,300 resettled outside of their country of origin, with the United States receiving 51% of refugees (UNHCR, 2016). Refugees are resettled across the United States (US) through the offices of nine national resettlement agencies. Of those agencies the United States Conference of Catholic Bishops/Migration and Refugee Services (USCCB/MRS) resettles roughly 30% of US cases (USCCB). Most of their clients come from the Middle East, Africa and Southeast Asian countries, the most popular countries being Burma and Somalia. This organization emphasizes early employment for refugees as a means for self-sufficiency while also addressing their transitional needs. They offer a wide array of services including English proficiency class, cultural orientation, money management, referrals to community sources etc. However, literature suggests that despite available services in resettlement agencies, refugees continually experience decreased health and well-being. Literature Review Refugees are transitioning from areas where they were displaced and had restricted occupational engagement. It is possible that newly arrived refugees experienced or still WOMENS EMPOWERMENT experience effects of occupational deprivation (Suleman & Whiteford, 2013). Occupational deprivation is a state of exclusion from necessary and meaningful occupations due to external restrictions (Whiteford, 2005). Humans are occupational beings and rely on meaningful occupations for fulfillment; it is through daily occupations that individuals develop their occupational and social identity. It is important to take into account the value of an occupational perspective in addressing issues of refugee resettlement in order to facilitate successful occupational transitions for newly arrived individuals and families (Suleman & Whiteford, 2013). Occupational therapy is based upon the central idea of achieving health, well-being, and participation in life through engagement in occupation (Occupational Therapy Practice Framework, 2014). Occupational therapists have a unique skill set in adapting occupations and a holistic viewpoint that can help empower refugees and ease the resettlement transition. Occupation-based interventions have a role in enhancing mental health, well-being and improving confidence with unfamiliar tasks (Trimboli and Taylor, 2016). Resettlement in a new country initially can be a relief for those escaping prosecution and war. However, once arrived confusion and fear sets in as refugees attempt to enter into a new society with a different culture from their own while still holding the physical, emotional and mental trauma from their previous life, especially for women. Approximately half of the global refugee population is women, yet they remain understudied from the perspective of gender (Shishehgar, Gholizadeh, DiGiacomo, Green, & Davidson, 2017). Refugee women face distinct challenges in balancing traditional gender roles, identity and expectations in a new cultural context (Gupta & Sullivan, 2013). Now they must adapt to their host country through reconfiguring their daily occupational lives while also attempting to be proficient in the English language. In comparison to women who voluntarily left their country of origin, refugee women 5 WOMENS EMPOWERMENT have a lower level of formal education and English language proficiency (Var, Poyrazli and Grahame, 2013). Language learning is the key to assimilating into a new culture and women typically take longer to reach a level of language proficiency as their primary caregiver role keeps them out of the workforce longer and limits opportunities for language attainment (Gupta & Sullivan, 2013). Shishegar (2016) found that the ability to communicate with others was a significant factor in securing a job, accessing education services and promoting personal autonomy. This can also hinder accessing health care services including preventive screenings such as mammography and cervical screens. Refugees continue to participate in some of their daily occupations as they did in their home country, but many occupations were adjusted, abandoned or newly emerging (Schisler & Polatajko, 2002). Different ways of performing certain occupations in an unfamiliar cultural setting changed the meaning of these familiar roles. The reaction to occupational discontinuity is mixed, based on its impact on self-identity and life goals. Some refugee women embrace the new found roles and identities that their new host country has to offer and reached a sense of competence; others see it as a significant hardship (Gupta & Sullivan, 2013). Most women originated from countries where daily occupations such as housework and parenting were done collectively with extended family members such as Somalia and Burma, and now they felt overwhelmed doing these occupations on their own which threatened their sense of female identity and worth (Gupta & Sullivan, 2013). Refugee males now had an equal share of the homemaking tasks and parenting. Women appreciated this greater gender equality and felt a sense of freedom from tradition. Without extended familial support, refugees experience loss of social connectedness at a community level. Work and other occupations are often used as distractions from separation 6 WOMENS EMPOWERMENT distress (Gupta & Sullivan, 2013). Having a lack of social support apart from their nuclear family can decrease rate of acculturation. A study that looked at Chechnya and Afghani refugee women found that social support significantly and consistently can reduce anxiety, depression and psychological problems over time. This can improve refugees psychological health and acculturation process (Renner, Laireiter, & Maier, 2012). Overall most refugees desire social integration, striving to socialize with members of their host culture as well as maintaining contact with their own culture. There is a gap in literature in regards to refugee women and sexual and reproductive health services (SRH). Studbury and Robinson 2016 found three barriers to accessing SRH services: socioeconomic status, health literacy, cultural norms and expectations and communication. Refugee women frequently lack the knowledge of SRH services and also not have had health education regarding the importance of such services (WHO, 2015). Without the knowledge of SRH services or health promotion, refugees may not seek them out or know they exist. Due to refugees low socioeconomic status, sexual health isnt their highest priority as there are more important concerns such as housing, food and safety. In terms of cultural norms, gender roles took precedence in SRH decision making particularly family planning. Health care professionals in Australia described a patriarchal gender structure in refugee populations that gave husbands power over their spouses sexuality and her ability to access contraception care In Arabic cultures (Mengesha, Perz, Dune and Ussher, 2017). Some refugee women have knowledge about contraception, yet they are unable to make family planning decisions because it is considered taboo and is the responsibility of the husband to make such decisions. The solution is a combination of practical skills and knowledge that will lead to an increase in refugee confidence and ability to engage with their environment, ultimately leading to 7 WOMENS EMPOWERMENT 8 positive occupational transitions (Suleman & Whiteford, 2013). Therefore, resettlement life skills can be considered an integral part of early transitions in refugee resettlement and a precursor to occupational engagement and well-being (Suleman & Whiteford, 2013). The World Federation of Occupational Therapists 2014 position paper on human displacement states, displaced people, by virtue of being human, have the right to occupational opportunities necessary to meet human needs, access human rights, and maintain health. By facilitating meaningful occupational engagement, and community integration in refugee populations the results include increased confidence and self-esteem, reduced social isolation, improved mental well-being and a renewed sense of purpose (Winlaw, 2017). Occupational therapy can play a vital role in all aspects of adaptation and resettlement. Through purposeful and goal oriented occupations, clients are able to practice and thus master their environment. This will allow increased self-confidence, self-sufficiency and well-being of refugees. Occupational therapists can help refugees by providing opportunities to practice appropriate occupations and establish supportive relationships, facilitate expression of emotional conflicts through group work, enhance smooth transitions and adaptation in new socio-cultural environments and assist in adopting appropriate occupational roles (Kwai-Sang Yau, 1997). As occupational therapists we are rooted in mental health and social justice and should ensure that refugees are equipped with the knowledge and support they need for a positive resettlement transition. Purpose Statement The purpose of this Doctoral Capstone Experience is to increase the knowledge and selfsufficiency of refugee women through occupational engagement in a six session womens empowerment group in order to create a positive resettlement transition. Each session has its WOMENS EMPOWERMENT 9 own specific goal and objects that will include life skills training and education in womens health/wellness. The refugees will be recruited through Catholic Charities Refugee Immigration in Indianapolis, Indiana. The model guiding this project is the Kawa River Model. This model is a client-centered approach used for the client to narratively draw out their day-to-day living experiences using a river metaphor (Cole & Tufano, 2008). The main purpose of the Kawa River Model is to represent how barriers in our life can impact our occupational performance. This will be used to help depict what life factors prevent refugees from experiencing a meaningful and fulfilling resettlement transition to America from their country of origin. Methods The placement for this Doctoral Capstone project was the Refugee Immigration Services department of Catholic Charities in Indianapolis. A needs assessment was conducted in order to provide assistance with formulating the projects purpose and foundational goals. Three in depth semi-structured interviews were done with staff from the Refugee Immigration Services. Staff included the Director of Refugee Services, Supervisor of Resettlement Services and Manager of Vulnerable Care. Interviews with staff members were used to discuss the needs of refugees that were not being met through their resettlement services. Interviews with refugees were not conducted due to transportation constraint, language barrier and the need for multiple interpreters. Through the needs assessment it was found that refugee women required more life skills training in daily occupations and education in womens health and rights. Life skills training topics included use of daily household appliances, managing the home, money management, hygiene, positive coping strategies and community involvement. Womens rights included reproductive rights, abuse and gender equality. Without having this knowledge, staff members WOMENS EMPOWERMENT noted that, some refugee women are manipulated into marriage at an early age, unintentional oppression from the community, isolation and sex for repayment. Staff reported refugee women present with low self-esteem and self-confidence due to feeling inferior to their male counterpart and isolation from others in their community. This is a topic that has not been explored previously and the staff at Catholic Charities wants their female refugees to gain self-sufficiency in order to not be reliant on their spouse or other male counterpart to thrive. This knowledge informed the idea to create a womens empowerment group for refugees that highlighted topics in the needs assessment using occupational therapy interventions in order to gain self-sufficiency and confidence in abilities for an overall greater occupational performance in daily life. Collaboration with refugee resettlement staff members was done to create goals for each session of the refugee womens group. A teach back method will be used to ensure that knowledge and skills were gained during each womens session. The group sessions will include life skills training as well as womens education. Suleman & Whiteford (2013) found that resettlement life skills is an integral part of early transition for refugees and is optimal for occupational engagement and well-being. By facilitating occupational engagement and community involvement in refugee resettlement, the result is great self-confidence and self-esteem, reduced isolation and a renewed sense of purpose (Winlaw, 2017). The focus of this project is similar to working with individuals with Autism in a schoolbased setting; the overall goal is self-sufficiency. Occupational therapists (OT) help ease the transition to college or employment by helping students develop self-advocacy and selfdetermination skills in order to plan for their future (AOTA). OT services for students with special needs are determined through the Individual Education Plan (IEP) process. Working with 10 WOMENS EMPOWERMENT 11 a school-based team they can evaluate and lead assessments to determine what is needed for a student to thrive at school. Unlike a school-based setting there is a greater emphasis on occupational deprivation and occupational justice in refugee resettlement. Giving refugees the opportunity to engage in meaningful occupation is necessary for healthy development, selfidentity and community participation. Participants Participants were refugee women living in Indianapolis, over the age of 15 who have been resettled by Catholic Charities. An excel sheet was gathered with a list of women who have resettled to Indianapolis within September 2016 to January 2018. Demographics of women included age, name, date of arrival, number of daughters over the age of fifteen, address, and date or resettlement. Participants were gathered using phone calls and at home in person discussion. Translation over the phone using staff at Catholic Charities was utilized when needed. Women who worked during the day were omitted. Overall roughly twenty women from varying ethnic groups agreed to participate. The women were separated based on location and ethnic group; overall four groups were assembled. This was done to ensure only one interpreter was needed for each womens group session and that group participation was within walking distance. Ethnic groups chosen were Burmese, Afghan, Syrian, and African. Grouping the women within similar ethnic groups allowed for community participation and social support. Implementation The overarching theme of these groups was womens empowerment through occupational therapy based interventions. Each session contained goals based on knowledge content and life skills training. The refugee womens groups extended over a six-week period with four separate groups held each week at different apartment complexes. The groups were separated into three distinct ethnic groups; Burmese, African, Afghan and Arabic. The separation WOMENS EMPOWERMENT was done to increase self-confidence, create a comfortable environment and promote social participation among the women. From these separate groups conclusions will be drawn based on needs of refugee women from specific geographical regions. Attendance and names of participants were collected prior to the start of each group. Each group was comprised of five intervention sessions and a final conclusion. Throughout the sessions during weeks one to five, the following topics were discussed: Household Appliances and Food Safety, Self-care and Feminine Hygiene, Money Management, Mental Health and Abuse, and Womens Rights, Family Planning and Gender Equality. Material was addressed through hands-on learning, informative educational pieces and visual models. A teach back method was used to indicate if the women understood what the presenter was trying to convey. At the end of each group, an interactive questionnaire was given. The questionnaire highlighted whether the women gained any knowledge from the session and how confident they felt about teaching this content to individuals within their community. Individuals were asked to demonstrate life skills training shown in each session to gauge competence. Each group lasted one to two hours. On the sixth session a satisfaction survey was given orally due to some refugee womens inability to read or write in English. Within the group, some women had greater English language proficiency and were used as interpreters for the rest of the group. Notes were taken at the end of each group containing questions the women had during the session. At the end of the six-week intervention a presentation was given to the staff at Catholic Charities with results from the womens groups. A womens empowerment video titled What is a strong woman? was created for International Womens Day on March 8. This video was used as a way to advocate for womens equality, especially for the refugee population. Women in each group were asked to participate and answer the question. What do you think a strong woman is?. The women gave consent to 12 WOMENS EMPOWERMENT photography and video footage during the resettlement process. Their answers to the question were audio and video recorded. The occupational therapy student filmed, edited and presented the video to the Refugee and Immigration Services staff. The video was broadcasted on Catholic Charities social media page. Leadership Skills and Staff Development Refugee resettlement is an emerging practice area with no occupational therapist present on site. I understood that since I didnt have a therapist on site that I would have to advocate and educate about how occupational therapy has a role in this setting. The first month at Catholic Charities involved shadowing home visits and advocating what occupational therapy is. During those home visits I noticed problem areas and discussed them with my site supervisor. Weekly sessions with the site supervisor were done in order to receive feedback; being open to change and constructive criticism of my ideas was needed for continuous improvement. Leadership skills were evident through advocating for the creation of a womens group, recruiting women, making lesson plans for each session and hosting each group. I lead each group for six weeks and made cultural sensitivity, personal attention, and empathy a priority. Based on certain ethnic group needs, I allowed feedback from the group to guide how long and how fast I discussed content. Staff development begins with understanding what occupational therapy is and what occupational therapists can offer refugees. A presentation about occupational therapy was given to all staff members at Catholic Charities. Evidence-based literature was used to highlight OTs role in refugee resettlement. At the end of the six weeks, discussion on important topics to the women and continued areas of improvement will be presented. Staff members plan to attend the 13 WOMENS EMPOWERMENT 14 womens groups discussed previously in order to see what issues they should address early on in resettlement. Discontinuation Throughout the six-week womens groups, an informal question and answer session was asked at the end of each session that highlighted content presented. Questions were given in an open answer format in order to quantify knowledge retained and life skills gained during each session. The informal question and answer session ensures quality improvement demonstrating how well information was presented by how well the women answered each content question. Outcome measures included a percent of knowledge retained at end of session, satisfaction questionnaire, and percentage of attendance. Tables are located in the appendices at the end of this document. Throughout all of the groups, refugee women retained the largest percentage of information regarding household appliances and feminine hygiene, while sessions regarding mental health and abuse received the smallest percentage of retention. This is partly due to the unfamiliarity to mental health and lack of an available interpreter. This data is located in Appendix B, and the questions asked during the satisfaction questionnaire can be found on Appendix D. When asked what sessions were valuable 100% voted the feminine hygiene and womens rights sessions, 75% voted the household appliances and food safety, and money management session, and 0% for the mental health and abuse session. These sessions were voted most valuable because they contributed to the womens daily activities. When asked on a scale from 1-5, with 5 being very confident, how confident are you as a mother, wife and woman after attending these group sessions, almost all women said 5 with one saying 4. An astounding 100% of women voted that they would attend group sessions if offered in the future. Women reported WOMENS EMPOWERMENT that attending sessions gave them something to do with their time and looked forward to attending group each week. Most of the women were single mothers or housewives that didnt receive an education in their previous countries; attending group was an opportunity for education. Lack of education was a common theme and need for the refugee women that should be addressed. Over twenty women in total participated in one or more womens group sessions. Specifically in the Burmese and Syrian groups, attendance changed each week, with new members invited by current members through word of mouth. Women included those who resettled through organizations other than Catholic Charities and relatives or friends of current participants. Women reported that they plan to discuss information they acquired in group sessions to others who were unable to participate. This created a dispersal of womens health and life skills information throughout the Burmese and Syrian communities of Indianapolis; therefore, expanding the amount of refugee women receiving knowledge. The African weekly group membership stayed consistent, with percentage of original group member attendance between 80 to 100% as noted in Appendix C. The Afghan group had two members that attended consistently and one member who attended sporadically. The bilingual members in each group were used as interpreters for the non-English speaking members. Each group was given time to process the information given and relay it back to non-English speaking members of the group before continuing on. The Afghan women overall had limited English proficiency and only had one member who was bilingual; however, she attended infrequently. Due to inability to find a suitable interpreter and communicate with the women effectively, most group sessions were cancelled, rescheduled or used as English proficiency and driving safety classes. The women in this group voiced that 15 WOMENS EMPOWERMENT 16 speaking English and learning how to drive were extremely important to them. They discussed with the OT student how the session content was useful, but what they really need is to be independent. Independence for this group was the ability to communicate with others and to drive. Eventually the Afghani womens group was disbanded due to lack of attendance and work schedule conflicts. The contents in session one and two were covered within this group. The womens empowerment video allowed for the women to express their beliefs on what they consider a strong woman is. Across all cultures, family was the greatest emphasis voiced among all interviews. In order to be a strong woman, you must take care of your children and make sure they have everything they need to succeed. Their role as a mother took precedence over everything. Session Outcomes The Syrian and Afghan women from the Middle East were more knowledgeable of household appliances as well as food safety relative to the other womens groups. They utilized ovens in their home countries and were aware of food safety guidelines, while the women from Burma and Africa had never used an oven in their life. Specifically, women from Africa used the oven as a storage unit, placing pans full of oil and leftover food inside. Both groups lacked the knowledge of expiration dates, proper food storage and dietary restrictions during pregnancy. In session two across all groups, women were unfamiliar with feminine hygiene products such as tampons and pH balanced washes and sexual and reproductive health (SRH). As this site is affiliated with the Catholic Church and its beliefs surrounding reproduction, contraceptive information was not provided to the refugee women. Women asked questions in regards to birth control and in-vitro fertilization options, but were referred to their primary care physician for WOMENS EMPOWERMENT information. The womens interest in such topics proves the need for SRH education in refugee populations. The money management session provided training in creating a budget, writing a check and reading an electric bill. Most of the women were already familiar with most of the training presented in this session, or they reported that their husbands were in charge of finances. They were unfamiliar with creating a monthly budget, which proved to be the most valued part of this session. The ability for the women to calculate their finances and discuss ways how they can save money based on their expenses was empowering. Now they are able to save money in the future towards a college fund, house, car etc. The womens rights session was beneficial to the refugee women because most were unaware that their rights in the United States were different than their country of origin. One woman reported that she believed her rights were identical to the ones she had previously in Ethiopia. In each group at least one woman reported that in their home country, females were seen as insubordinate to males. Over 50% of group members were married and had children by the age of seventeen, especially the women from the Middle East. All groups were encouraged to teach their children about gender equality, and discrimination. It is important that each refugee understands their civil rights, in order to not be subject to manipulation by others. Mental health and abuse was found to be the least valuable of all the sessions and the hardest for the groups to retain knowledge. The content in this session was difficult to present due not having an interpreter present and some cultures not having a word for mental health in their dialect. To combat this issue, Catholic Charities will provide an interpreter for future womens sessions. Most of the women mentioned that physical and sexual abuse is common in their country, but were not as concerned for their safety now that they are in the United States. 17 WOMENS EMPOWERMENT 18 The women reported they dont feel in danger or stressed because they are far away from war and are safe here in America. This creates a false belief system. They are in fact safer because they are away from war, but that may lead to issues with trusting strangers or other issues that would put them in danger of sexual or mental abuse. Beyond the assigned group sessions, women were asked what topics they would like to learn in the future. Most women reported that they would like to be more proficient speaking English. The Burmese group reported that they would like to gain computer skills in how to buy products and pay bills online. The results of the womens sessions were presented to the staff at Catholic Charities once all groups were completed. Upon termination of services multiple pamphlets will be given to Catholic Charities to help ensure continuation of womens education. The Vulnerable Case Manager at Catholic Charities will discuss the womens group sessions with the OT student in order to learn how to present each session to continue program development. A food storage and safety checklist was developed using information gathered during the Household Appliances and Food Safety session. Upon resettlement a refugees case manager must do a 24-hour visit of their apartment, to ensure safety and household appliance information is given. The checklist will serve as a guideline for food safety discussion. A sexual and reproductive health pamphlet was created for the staff at Catholic Charities to disperse amongst their mentors and volunteers in order to educate the refugee families they serve. The pamphlet highlighted womens reproductive health and natural family planning information. A mental health and abuse pamphlet was created. The pamphlet contained techniques to relieve stress and anxiety, including grounding and deep breathing methods. Signs of domestic abuse were added with hotlines to call if an abusive event occurred. Overall Learning WOMENS EMPOWERMENT One cannot define all refugees into a singular category; each culture has its own unique customs, beliefs, and mannerisms that should be honored and explored. Humans are inherently occupational beings that derive their identity based on the occupations they pursue. Refugees are forced to navigate through a new environment with a completely new language, culture and way of life that can disrupt their occupational performance. Some refugees struggle to possess the life skills and education needed to thrive in the United States. This Doctoral Capstone Experience was implemented to empower refugee women to a positive resettlement transition through occupational engagement in a six session womens group intervention. A better understanding of refugee womens barriers to a positive resettlement transition was found. The Kawa River Model was used as a guide to depict how barriers in refugees lives can impact their overall occupational performance. Refugee women have barriers within their roles as a housewife, mother and woman that are created because of a new cultural context. The barriers noted throughout this doctoral capstone were English language proficiency, life skills training, lack of education, and lack of awareness to available resources. This results in occupational deprivation because refugees are unable to effectively engage with their environment due to these obstacles. A common theme throughout the womens sessions was a drive and desire to learn English. Women invited people in their community through word of mouth in order for them to attend group sessions to practice their English proficiency skills. The Burmese and Syrian women greatly valued group sessions because they didnt work or attend school; their primary roles are a housewife and mother. Some of the women felt they werent competent enough to hold a job due to their poor English skills; therefore group sessions were times for them to practice competence. Once English proficiency is reached, they will be able to job search and 19 WOMENS EMPOWERMENT become even more independent. The other women who didnt have a desire to work wanted to be able to communicate with doctors, cashiers, bank tellers etc. The main goal was for them to be able to interact independently within their environment. If they are unable to perform meaningful occupations, this creates lowered self-efficacy and self-confidence. Most women voted that the money management; womens rights and feminine hygiene sessions were the most valuable. They reported that they felt more confident as a mother, wife and woman at the end of these sessions, thus increasing their self-identity and self-efficacy. Out of the sessions chosen, making a budget, understanding feminine care products, understanding food safety, and understanding their rights in the United States were discussed as the most beneficial information taught. The women valued life skills training and over mental health education. This may be due to the Maslow Hierarchy of Needs theory. Maslows theory stated that people are motivated to achieve certain needs, and some needs take precedence over others. The most basic need is for physical survival and this need motivates our behavior. Once that level is fulfilled the next level up is what motivates us to act, and so on (Maslow, 1943). As refugees are struggling to accomplish the most basic needs for survival in a new country, i.e. English proficiency skills and employment, those needs take precedence over their mental health. A strong religious belief was also tied with lowered mental health concerns. In particular in the African womens group when asked if they ever feel anxious or stressed, one woman reported, No problem, God will provide. Most women have faith in their deity to provide for them in times of trouble, as long as they have their god they will survive any circumstance. This belief can also be harmful, assuming a deity will provide can create Throughout this experience the refugee women who participated in the womens empowerment group appeared resilient despite their life experiences. This is likely because of 20 WOMENS EMPOWERMENT the large community of refugees present in Indianapolis, especially Burmese, and Arabic speaking individuals. There are numerous mosques and Chin Baptist churches in Indianapolis that help incoming refugees acculturate to their new surroundings. Another reason could be the strong connections they have with their children and family. All of the women who participated in the womens empowerment video mentioned that prerequisite to be a strong woman was to always provide for your family. Refugees require continued sexual and reproductive health (SRH) education. In most of the refugee womens cultures, sexuality and menstruation is considered taboo to discuss; therefore women do not seek out SRH services. Numerous questions were asked about family planning and birth control options that the occupational therapy student was unable to address due to Catholic Charities beliefs on contraceptives. All of the women who attended the feminine hygiene session were unaware of feminine hygiene products available. They reported they would use bar soap or scented soap to wash their feminine areas. Most of the women have never been to the gynecologist, or were unaware of preventative screening practices. Refugee womens lack of SRH education make them vulnerable to SRH difficulties, such as sexually transmissible infections and unplanned pregnancies in the future (Metusela et al., 2017). This knowledge should be extended to the male refugee population, so that couples can discuss family planning and other SRH issues as a unit. In contrast it is important for health care professionals to understand the socio-cultural restraints; which may inhibit SRH knowledge in refugees in order to provide culturally appropriate SRH education and services (Metusela et al., 2017). Implications for Occupational Therapy Occupational therapys unique skill set and occupational focus can bring new meaning to the lives of refugees and help counter the effects of occupational deprivation. The core belief of 21 WOMENS EMPOWERMENT occupational therapy is independence through facilitating engagement in meaningful occupations. This doctoral capstone experience supports that belief through engaging refugee women in life skills training and womens education in order to increase their self-efficacy and self-confidence in their abilities within their roles. Beyond that this project helped connect recently resettled refugee women with other more acculturated women who have experienced the same lifestyle changes. As a result a support group was created that can grow beyond this capstone experience. It is important to note as a health care provider the varying occupational needs each culture has and not to assume certain practices. As a profession we have a place within the refugee population to help enable refugees into a positive resettlement transition whether that be through facilitating new occupational roles, practicing engagement of culturally significant occupations or education. 22 WOMENS EMPOWERMENT 23 Appendix A Goals Session 1: Household Appliances and Food Safety Clients will participate in kitchen activity in order to gain knowledge in using household appliances. o Appliances included: oven, dishwasher, and microwave Clients will be educated on food safety, and dietary restrictions during pregnancy. The group will be questioned on knowledge content presented and confidence in abilities. Session 2: Self-care and Feminine Hygiene Clients will participate in spa day activities in order to build rapport with presenter and engage with other group members. Clients will be educated on self-care, feminine hygiene products and preventative care. The group will be questioned on knowledge content presented and confidence in abilities. o Products included: tampons, pads, deodorant, and feminine wash Session 3: Money Management Clients will participate in simulated activity in order to build skills in creating a budget, filling out a check and paying bills. Clients will be educated on how to manage a bank account, saving for the future and reading bills. The group will be questioned on knowledge content presented and confidence in abilities. Session 4: Mental Health Clients will participate in group activities in order to engage with other group members and discover ways to cope with stress. Clients will be educated on mental health, helpful coping strategies, and abuse. The group will be questioned on knowledge content presented and confidence in abilities. Session 5: Womens Rights, Family Planning and Gender Equality Clients will be educated on womens rights, gender equality, workplace discrimination and natural family planning. The group will be questioned on knowledge content presented and confidence in abilities using yes or no questions. Session 6: Wrap Up Quality improvement discussion using a Satisfaction Survey. WOMENS EMPOWERMENT 24 Appendix B Percent of knowledge retained at end of session Group Session 1 Session 2 Session 3 Session 4 Session 5 Burmese 80% 60% 75% 75% 60% African 80% 60% 60% 50% 50% Syrian 80% 50% 50% 25% 25% Afghan 75% 25% N/A N/A N/A WOMENS EMPOWERMENT 25 Appendix C Session 1 6 Session 2 4 Number of members attended Percent of 57.14% 42.86% original recruitment group member attendance Number of 6 4 reoccurring members Addition 2 0 of new group members by word of mouth Original Recruitment Number: 7 Burmese Group Session 3 Session 4 3 5 Session 5 3 Session 6 4 14.29% 14.29% 42.85% 42.85% 2 2 3 4 1 3 0 0 Ethiopian and Eritrean (African) Group Session 1 Session 2 Session 3 Session 4 Session 5 4 4 5 3 4 Number of members attended Percent of 80% 80% original recruitment group members attendance Number of 4 4 reoccurring members Addition 0 0 of new group members by word of mouth Original Recruitment Number 5 Session 6 3 100% 60% 80% 60% 5 3 4 3 0 0 0 0 WOMENS EMPOWERMENT Session 1 & 2 Number of 5 members attended Percent of 60% original recruitment group members Number of 5 reoccurring members Addition 2 of new group members by word of mouth Original Recruitment Number: 5 26 Syrian Group Session 3 Session 4 4 4 Session 6 5 60% 60% 33.33% 60% 4 4 5 5 0 0 1 0 Session 5 N/A Session 6 N/A Afghan Group Session 2 Session 3 Session 4 2 N/A N/A Session 1 Number of 3 members attended Percent of 100% 66% original recruitment group member attendance Number of 3 2 reoccurring members Addition 0 0 of new group members by word of mouth Original Recruitment Number: 3 Session 5 6 N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A WOMENS EMPOWERMENT 27 Appendix D Satisfaction Survey 1. 2. 3. 4. 5. 6. 7. 8. Which sessions did you enjoy the most? Which sessions did you not like? What else would you like to learn? Were these sessions beneficial for you? On a scale from 1-5, how beneficial were these sessions? Why were the sessions beneficial? On a scale from 1-5, how well did I teach the sessions? On a scale from 1-5, how confident are you as a mother, wife and woman after attending group sessions? 9. Would you attend group sessions if offered in the future? 1 2 3 4 5 Not beneficial Somewhat beneficial Neutral Beneficial Very beneficial Didnt teach well Somewhat taught well Neutral Taught well Taught very well Not confident Somewhat confident Neutral Confident Very Confident WOMENS EMPOWERMENT 28 References American Occupational Therapy Association. (2018). Occupational Therapy in School Settings [Fact Sheet]. Retrieved from https://www.aota.org/~/media/Corporate/Files/AboutOT/Pro fessionals/WhatIsOT/CY/Fact-Sheets/School%20Settings%20fact%20sheet.pdg Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, MJ: SLACK Incorporated. Gupta, J., & Sullivan, C. (2013). The Central Role of Occupation in the Doing, Being and Belonging of Immigrant Women. Journal Of Occupational Science, 20(1), 23-35. doi:10.1080/14427591.2012.717499 Kwai-Sang Yau, M. (1997). The impact of refugee resettlement on Southeast Asian adolescents and young adults: Implications for occupational therapists. Occupational Therapy International, 4(1), 1-16. Maslow, A. (1943). A theory of human motivation. Psychological Review, 50(4), 370-396. Mengesha, Z. B., Perz, J., Dune, T., & Ussher, J. (2017). Refugee and migrant women's engagement with sexual and reproductive health care in Australia: A socio-ecological analysis of health care professional perspectives. Plos One, 12(7), e0181421. doi:10.1371/journal.pone.0181421 Metusela, C., Ussher, J., Perz, J., Hawkey, A., Morrow, M., Narchal, R., & ... Monteiro, M. (2017). 'In My Culture, We Don't Know Anything About That': Sexual and Reproductive Health of Migrant and Refugee Women. International Journal Of Behavioral Medicine, 24(6), 836-845. doi:10.1007/s12529-017-9662-3 OCCUPATIONAL THERAPY PRACTICE FRAMEWORK: Domain & Process, 3rd Edition. (2014). American Journal of Occupational Therapy, S1-S48. Renner, W., Laireiter, A., & Maier, M. J. (2012). SOCIAL SUPPORT AS A MODERATOR OF WOMENS EMPOWERMENT ACCULTURATIVE STRESS AMONG REFUGEES AND ASYLUM SEEKERS. Social Behavior & Personality: An International Journal, 40(1), 129-146. doi:10.2224/sbp.2012.40.1.129 Shishehgar, S., Gholizadeh, L., DiGiacomo, M., Green, A., & Davidson, P. M. (2017). Health and Socio-Cultural Experiences of Refugee Women: An Integrative Review. Journal Of Immigrant And Minority Health, 19(4), 959-973. doi:10.1007/s10903-016-0379-1 Sudbury, H., & Robinson, A. (2016). Barriers to sexual and reproductive health care for refugee and asylum-seeking women. British Journal Of Midwifery, 24(4), 275-281. doi:10.12968/bjom.2016.24.4.275 Suleman, A., & Whiteford, G. E. (2013). Understanding Occupational Transitions in Forced Migration: The Importance of Life Skills in Early Refugee Resettlement. Journal Of Occupational Science, 20(2), 201-210. doi:10.1080/14427591.2011.755908 Trimboli, C., & Taylor, J. (2016). Addressing the occupational needs of refugees and asylum seekers. Australian Occupational Therapy Journal, 63(6), 434-437. doi:10.1111/14401630.12349 UNHCR. Status of Refugees. (n.d.).Convention and Protocol Relating to the Status of Refugees(p. 4). Retrieved from http://www.unhcr.org/3b66c2aa10.pdf Var, S., Poyrazli, S., & Grahame, K. M. (2013). Personal Well-being and Overall Satisfaction of Life of Asian Immigrant and Refugee Women. Journal Of Asia Pacific Counseling,3(1), 77-90. Whiteford, G. E. (2005). Understanding the occupational deprivation of refugees: a case study from Kosovo. Canadian Journal Of Occupational Therapy. Revue Canadienne D'ergotherapie, 72(2), 78-88. 29 WOMENS EMPOWERMENT Winlaw, K. (2017). Making the connection: Why refugees and asylum seekers need occupational therapy services. Occupational Therapy Now, 19(4), 18-19. World Federation of Occupational Therapists . 2012 . Position statement on human displacement. Retrieved June 22, 2012, fromhttp://www.wfot.org/ResourceCentre.aspx World Health Organization (2015) Fact sheet No 351: Family planning/contraception. www.who.int/mediacentre/ factsheets/fs351/en (accessed 10 March 2016) 30  ...

... WHAT IS THE MEANING OF OCCUPATIONAL THERAPY FOR PATIENTS WITH LEFT VENTRICULAR ASSIST DEVICES IN ACUTE CARE? Submitted to the Faculty of the College of Health Sciences University of Indianapolis In partial fulfillment of the requirements for the degree Doctor of Health Science By: Elizabeth Wyble, OTR/L Copyright September 5th, 2017 By: Elizabeth Wyble, OTR/L All rights reserved Accepted by: Jennifer Fogo, PhD, OTR, Committee Member Cheryl Bittel, MSN, APRN-CCNS, NP-C, CCRN, Committee Member Lisa Borrero, PhD, Committee Chair Laura Santurri, PhD Director, Postprofessional Programs Stephanie Kelly, PT, PhD, Dean, College of Health Sciences University of Indianapolis ii OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Table of Contents Table of Contents.ii List of Tables..............iii Abstract...iv Chapter 1: Introduction1 Purpose.2 Chapter 2: Literature Review...........3 History..4 Exercise Post LVAD............5 Quality of Life Post LVAD..7 Interdisciplinary Approach Post LVAD..........8 Occupational Therapy Post LVAD..........9 Summary11 Chapter 3: Method.13 Study Design..........13 Participants and Recruitment.13 Data Collection..........16 Data Analysis.17 Chapter 4: Results..20 Themes...20 Chapter 5: Discussion and Conclusion..30 References..40 Appendices.46 iii OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE List of Tables and Figures Table 1 Characteristics of Participants in Study.....52 Figure 1 The Meaning of Occupational Therapy for Patients with Left Ventricular Assist Devices...53 iv OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Abstract Patients with end-stage heart failure may rely on left ventricular assist devices (LVADs) when heart transplant is delayed or not an option. Growing numbers of patients with LVADs has led to more research being performed to discover what services and support they need. None of this research has examined these patients experiences with occupational therapy in the hospital. Using the interpretative phenomenological approach (IPA) of qualitative study, semi-structured interviews of seven questions were conducted to extract the meaning of the occupational therapy services received in acute care for participants. Nine participants were recruited in a convenience sample. They were within six months of LVAD implantation, as bridge to transplant or destination therapy, and ranged from 19-78 years of age. Data analysis established four major themes: lifestyle change, caregiver support, physiological process, and occupational therapy relevance: hospital to home. The participants all viewed occupational therapy services and having an actual shower in the hospital as beneficial to their preparation for returning home. This study demonstrates that patients with LVADs perceive occupational therapy services meaningful, as they provide positive caregiving, beneficial interventions, and education during hospitalization after LVAD implantation, facilitating life change. As the number of individuals with LVADs continues to grow, occupational therapy educators, students, and practitioners need to be aware of the services they can offer patients with LVADs and the meaning these patients ascribe to occupational therapy. Increased awareness and education regarding the LVAD and support occupational therapy services offer to patients with LVADs will improve the quality of care provided. 1 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE What is the Meaning of Occupational Therapy for Patients with Left Ventricular Assist Devices in Acute Care? A heart transplant is the most desirable treatment for end stage congestive heart failure. However, a heart is not always available to a patient right away, nor is it always an appropriate solution for a patient, especially if a patient has other co-morbidities. If quality of life has decreased and/or death is imminent, a left ventricular assist device (LVAD), is often considered, making it a more common option for patients with end stage heart failure (Iseler & Hadzic, 2015). The LVAD has improved technology with a smaller sized, continuous flow pump compared to the earlier, larger pulsatile pump, allowing for increased implantation of the device into patients as bridge to transplant (BTT) or destination therapy (DT) (Lietz, 2010). With the elevated number of LVADs being placed, occupational therapy practitioners are expected to treat an increasing number of patients following their LVAD surgery. Thus, as the number of patients with LVADs increases, occupational therapy practitioners could benefit from discipline specific research involving these patients. Occupational therapy practitioners need to increase their knowledge of patients with LVADs, including analysis of appropriate interventions addressing the changing needs of these patients which could result in regaining functional independence. As the number of patients with LVADs has risen, there has been an increase in the body of research regarding this population. One area of study for patients receiving LVADs is therapeutic exercise, which is also an area of focus for occupational therapy. Prior studies have identified the importance of exercise for increasing functional independence for patients implanted with a LVAD (Bogaev et al., 2011; Hayes, Leet, Bradley, & Holland, 2012). Other areas of interest for occupational therapy practitioners identified by previous literature are selfcare and community re-entry. Prior investigators examined adjustment with transitioning back 2 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE into the home environment and the difficulties encountered on discharge, including the ability to perform activities of daily living (ADLs) (Casida, Maruccilli, Peters, & Wright, 2011). While other disciplines have performed research applicable to occupational therapy practice, they lacked occupational therapy specific information when working with patients with LVADs. The research that exists was focused from other discipline perspectives, or comprised of case studies in inpatient rehabilitation settings, and was not focused on discharge preparation (Abramson, Harvey, Greenfield, Lauman, & Metzler, 2016; Nissinoff, Tian, Therattil, Salvarrey, & Lee, 2011). In addition, there has been some qualitative research, using a phenomenological approach, addressing self-care needs and home adjustment needs of patients with LVADs, such as dressing, showering, and socializing. However, those studies have been primarily interested in the nursing or caregiver perspective. Few studies involved the patient perspective, nor did they address occupational therapy (Baker, Flattery, Salyer, Haugh, & Maltby, 2012; Casida et al., 2011; Marcucilli, Casida, Bakas, & Pagani, 2014). While those studies have contributed to qualitative knowledge regarding the patients with LVADs population, a deeper understanding of the post-operative experience from the patients perspective is needed. In addition, there are few occupational or physical therapy publications regarding patients with LVADs and those that do exist suggest that further research is needed to understand what is important to patients after LVAD surgery and how occupational therapy practitioners can help them achieve their goals (Abramson et al., 2016). The purpose of this study was to investigate the experience of hospital-based occupational therapy, from the perspective of patients who had recently been implanted with a LVAD. Current scientific literature has revealed a knowledge gap regarding patients 3 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE perceptions of how occupational therapy practitioners can assist with their transition from hospital to home after LVAD placement. By filling the gap, occupational therapy practitioners could have a better understanding of the services they might provide to assist this population. The current study sought to answer the following question using an interpretative phenomenological approach: What is the meaning of occupational therapy for patients with LVADs in acute care? Literature Review A literature search was performed, by way of multiple online databases, regarding occupational therapy services for patients with implanted LVADs. The results of the literature search demonstrated at least 14 articles supporting exercise for increased function and quality of life (QOL) for patients with LVADs (Abshire, Dennison Himmelfarb, & Russell, 2014; Ben Gal et al., 2015; Bogaev et al., 2011; Buck, 1998; Evans et al., 2011; Fernandez & Ford, 2014; Freeman & Maley, 2013; Hayes et al., 2012; Humphrey, Buck, Cahalin, & Morrone, 1998; McGarrigle & Caunt, 2016; Nicholson & Paz, 2010; Perme et al., 2006; Rogers et al., 2010; Shoemaker et al., 2014). In addition, literature was found regarding the caregiver experience post LVAD implantation (Abshire et al., 2014; Baker et al., 2010; Brouwers et al., 2011; Casida, 2005; Casida et al., 2009; Casida et al., 2011; Iseler & Hadzic, 2015; Marcuccilli et al., 2014). There was also a noted increase, as compared to five years ago, in literature involving case studies and retrospective analyses involving physical therapists and focusing on functional independence measure (FIM) scores (Alsara et al., 2014; Chu, McCormick, Hwang, Sliwa, & Rydberg, 2014; English & Speed, 2013; Hollander et al., 2014; Nguyen & Stein, 2013; Nissinoff et al., 2011; Norton, Kuhar, & Poduri, 2015; Yost, Coyle, Milkevitch, Adair, Tatooles, & Bhat, 2017). Through the course of the search there appeared to be a significant gap in the literature 4 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE regarding occupational therapy intervention for patients with LVADs, with no research in the literature demonstrating a deep understanding of the patients hospital experience following LVAD implantation. The current review was intended to further identify areas of need in the research which were beginning to develop for occupational therapy practitioners and to provide insight into what was needed from a patient perspective. History The first LVAD was implanted in the 1980s as a BTT. (Stewart & Givertz, 2012). At that time the LVAD consisted of an implanted pulsatile device into the heart that was connected via external line to a large power module on wheels. The patient was able to get out of bed to chair and may or may not have been able to walk-in the hallway. No shower was permitted, only sponge bathing, for the patients safety. The patient was not able to be discharged home and remained in the hospital until an available heart could be found. Physical limitations persisted with this large device implanted in the pre-peritoneal space, affecting pain, mobility, and food consumption. In 1998, the Randomized Evaluation of Mechanical Assistance for the Treatment of Congestive Heart Failure (REMATCH) study trials were initiated. This study continued until 2001 and led to the US Food and Drug Administration (FDA) approval of a modified LVAD, which was created by Thoratec to be used for DT, or as an alternative treatment to a heart transplant (Lietz, 2010). The LVAD in the REMATCH trials, though smaller and no longer pulsatile, still put great limitations on the patients functional independence. The medical and therapeutic focus for the patient with a LVAD at that time was not independence in function, but preventing deconditioning while awaiting a heart or other form of treatment (Humphrey et al., 1998). Case studies published by Buck (1998) demonstrated the importance of exercise and 5 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE mobility as part of the physical therapy treatment for patients receiving LVADs at the researchers facility. Ventricular assist device technology continued to evolve, with the development of several models of circulatory support devices, including the Thoratec HeartMate II. The HeartMate II was a smaller, continuous flow LVAD, with device implantation into the heart. It was attached to either a smaller power-based unit or battery powered by way of an external drive line and smaller controller, which could be worn on the person. Trials of this mechanical circulatory support system were completed in 2007, with FDA approval for BTT in 2008 and DT in 2010 (Lietz, 2010). Since the FDA approval of the HearthMate II, different manufacturers have designed similar devices with some variations, such as the centrifulgal force HeartWare HVAD, which was also approved by the FDA for BTT (Slaughter, et al, 2013). The smaller size of the VADs allowed for increased mobility and functional independence for patients receiving the device. However, the initial investigations of patients with LVADs postoperatively remained focused on exercise capacity and mobility, with minimal or no mention of occupational therapy services (Abshire et al., 2014; Ben Gal et al., 2015; Bogaev et al., 2011; Evans et al., 2011; Freeman & Maley, 2013; Hayes et al., 2012; Nicholson & Paz, 2010; Rogers et al., 2010; Shoemaker et al., 2014). Exercise Post LVAD Therapeutic exercise has always been identified as beneficial to patients with LVADs (Ben Gal et al., 2015; Bogaev et al., 2011; Evans et al., 2011; Hayes et al., 2012; Rogers et al., 2010). Several investigations examined exercise capacity, based on data from the HeartMate trials (Bogaev et al., 2011; Rogers et al., 2010). Exercise capacity was evaluated with 6-minute walk tests, lab values, cardiac functional status measures, and cardiac QOL measures at varying 6 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE timeframes, both pre and post implantation. Findings demonstrated that while some patients could not walk prior to LVAD implantation, they had improved activity tolerance, walked increased distances, and had improved QOL scores after LVAD implantation. The researchers results highlighted the importance of exercise and mobility after LVAD implantation for improving functional independence and QOL. However, the studies did not report from the patients perspective and did not mention exercise in relation to occupational therapy services, though this is an area within their scope of practice as it relates to the performance skills of patients (American Occupational Therapy Association [AOTA], 2014). Later studies included physical therapists and nurses along with physicians performing the research (Ben Gal et al., 2015; Evans et al., 2011; Hayes et al., 2012). With the inclusion of physical therapists and nurses, there began to be an emphasis on exercise protocols post LVAD placement and on the types of exercise performed. Exercises included cycling, treadmill ambulation, and strengthening of the upper and lower extremities. The exercises varied in the frequency of daily performance and number of repetitions. Findings of the studies demonstrated that despite the varied exercises and exercise protocols that patients experienced after LVAD surgery, increased strength, endurance, and gait distance were observed (Ben Gal et al., 2015; Hayes et al., 2012). An analysis of the current research conducted by physical therapy and nursing professionals indicated that patients with LVADs who exercised had shorter lengths of stay in the hospital (Evans et al., 2011). The above studies demonstrated the positive effect of exercise for patients with LVADs and the importance of interdisciplinary involvement during patient care. Researchers also began to recognize the importance of earlier mobility, QOL, and improved functional independence, for easier re-entry into the community after discharge. However, the investigations lacked occupational therapy and patient perspective, instead 7 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE researchers based their findings on observation, professional surveys, or retrospective chart analyses (Ben Gal et al., 2015; Evans et al., 2011; Hayes et al., 2012). Quality of Life Post LVAD In the earlier REMATCH trials, improved QOL was observed, which prompted more studies looking at overall wellbeing of patients and caregivers following LVAD implantation (Lietz, 2010). Quality of life, especially with regards to maintaining independence with self-care and home or community management were identified areas within the occupational therapy scope of practice (AOTA, 2014). As researchers became more focused on the QOL for patients with LVADs, more qualitative findings were published and concerns about the effects on caregivers came to light (Baker et al., 2010; Brouwers et al., 2011; Casida et al., 2011; Casida et al., 2009; Iseler & Hadzic, 2015; Marcuccilli et al., 2014). For example, stress of adaptation to a new way of life after the patient was implanted with a ventricular assist device was identified by caregivers (Marcuccilli et al., 2014). In particular they voiced their commitment to the patient, as well as their sacrifices. Caregiver sacrifice included leaving their jobs and incurring financial strain, as well as decreased time with friends, and decreased attention to their own health (Baker et al., 2010). In general, it appeared that LVAD implantation was a serious life change requiring time for the whole family to fully adapt (Marcuccilli et al., 2014). Casida et al. (2011), found that patients with LVADs identified the importance of hospital staff assisting patients and caregivers with the transition from life before LVAD implantation, to returning home after implantation. Transitional assistance was not just for physical changes, but also for social and emotional needs of the patient and family. Though nursing focused, the study touched on areas within occupational therapy scope of practice, including home modification, which consisted of rearranging furniture to fit the power-based 8 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE unit, and to make moving with the power cord safe. In addition, self-care was addressed, especially fear of the first shower at home, post LVAD placement. The AOTA (2014) described one of the goals of occupational therapy as aiding patients and families with the transition and adaptation to life changes after a significant health event. Perhaps occupational therapy practitioners could provide this service for patients with LVADs and their families or caregivers. An in-depth understanding of the needs of these patients during hospitalization, aftercare, and on discharge would provide a guide for occupational therapy practitioners to help patients and caregivers with these transitions. Interdisciplinary Approach Post LVAD In recent years, a multidisciplinary, evidence-based approach to the treatment of patients receiving LVADs has been emphasized. (Alsara et al., 2014; Chu et al., 2014; English & Speed, 2013; Fernandez & Ford, 2014; Hollander et al., 2014; McGarrigle & Caunt, 2016; Murray et al., 2009; Nguyen & Stein, 2013; Nicholson & Paz, 2010; Norton, Kuhar, & Poduri, 2015; Shoemaker et al., 2014; Yost et al., 2017). The majority of these studies occurred in an inpatient acute rehabilitation setting and were published as case studies or retrospective analyses of patient charts. Some studies were physical therapy focused, looking at the benefits of exercise and mobility for patients with LVADs and other assistive heart devices (Fernandez & Ford, 2014; McGarrigle & Caunt, 2016; Nicholson, & Paz, 2010), while other studies looked at FIM score comparisons (Alsara et al., 2014; Chu et al., 2014; English, & Speed, 2013; Nguyen, & Stein, 2013; Norton, Kuhar, & Poduri, 2015; Yost et al., 2017). The FIM is the most commonly used assessment in the inpatient rehabilitation setting, and measures daily living skills and mobility independence on a seven point scale with one being total assistance and seven being independent (Alsara et al., 2014). The patients reviewed in the studies received standard care appropriate to 9 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE an inpatient rehabilitation unit, with daily occupational, physical, and speech therapies, in addition to nursing and physician care. The results of the investigations demonstrated significant functional gains during inpatient rehabilitation stays, according to higher FIM scores at discharge as compared to admission scores (Alsara et al., 2014; Chu et al., 2014; English & Speed, 2013; Nguyen & Stein, 2013; Norton, Kuhar, & Poduri, 2015; Yost et al., 2017). The studies involved single-group cohorts who received inpatient acute rehabilitation services. There was no comparison to groups not receiving the acute rehabilitation services, therefore limiting the reliability of the studies assumptions that this setting was more effective for improving patient function than another setting. Comparison of differing treatment and non-treatment groups would be important for future evidence-based practice. The investigations highlighted the importance of the interdisciplinary team, explaining that the patients benefited from the services provided. However, they did not give any detail regarding the scope of occupational therapy services involved. These studies did not give any insight into the patients perceptions of their rehabilitation and no information was provided regarding the care that occurred in the acute care setting prior to inpatient rehabilitation admission. Occupational Therapy Post LVAD In 2004, Shepherd and Wilding published not a research study, but a discussion regarding what occupational therapy could possibly offer patients implanted with LVADs. The authors discussed the role of occupational therapy, involving exercise through purposeful activity, LVAD equipment safety, self-care, and education of patients and caregivers. They identified patients with ventricular assist devices as a growing population, needing occupational therapy support for functional living. While these topics are still applicable, this article was published prior to the HeartMate II trials and the technology referenced in the article would not be relevant 10 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE to current healthcare practice. Other narratives, such as that of Abramson et al. (2012) and McIntyre (2007) provided general overviews of mechanical circulatory system technology and occupational therapy considerations and interventions. The authors provided general information regarding occupational therapy services across healthcare settings and reported that the occupational therapy intervention appeared beneficial to patients. However, the McIntyre (2007) article had inaccuracies with regard to self-care interventions, possibly due to out of date information. Both articles ended by requesting that evidence-based research be conducted to support occupational therapy services, for patients receiving mechanical circulatory support. More recently, Padmanabhan and Thankachan (2011) published a discussion of the phases of occupational therapy treatment provided throughout the healthcare continuum for patients with LVADs. The authors described their own protocols used in acute care, inpatient rehabilitation, home health, and outpatient services. Their protocol was a six-phase intervention, including routine occupational therapy activities such as the initial evaluation, positioning, range of motion, splinting, ADLs, energy conservation, upper extremity coordination, and endurance building. The focus on ADLs began at bedside with feeding and grooming, and then moved to advanced self-care tasks, such as shower kit training, including the equipment and precautions needed for the LVAD. Upper extremity coordination was important for general LVAD management, involving manipulation of the power connectors and moving from the power-based unit to battery power. Occupational therapy also assisted with the discharge planning for the patient and family. The patients remained in the hospital or inpatient rehabilitation setting until they were independent with their LVAD and daily living skills, or they moved on to another level of care. The final phases of care involved moving the patient to long-term acute care, a skilled nursing facility, outpatient setting, or home health. Throughout all phases, education was 11 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE provided to patients and caregivers (Padmanabhan & Thankachan, 2011). The authors reported successes, with patients achieving improved function and caregiver satisfaction with the described methods of occupational therapy intervention. However, the reported successes are the authors opinions of the results of interventions they believed are best practice. Their protocols had not been studied for their effectiveness by a quality research design, nor had they been compared to other possible interventions. The authors discussed gaps in evidence-based literature demonstrating the benefits of occupational therapy for individuals with a ventricular assist device, as well as the need to further explore how occupational therapy practitioners could assist patients and their families transition from hospital to home. Summary Overall, there appeared to be agreement among researchers that the number of patients with LVADs was growing and that healthcare professionals, including occupational therapy practitioners, needed to know more about these patients and their care (Abramson et al., 2012; Alsara et al., 2014; Chu et al., 2014; English & Speed, 2013; Evans et al., 2011; Hollander et al., 2014; McIntyre, 2007; Murray et al., 2009; Nicholson & Paz, 2010; Nguyen & Stein, 2013; Norton, Kuhar, & Poduri, 2015; Padmanabhan & Thankachan, 2011; Shepherd & Wilding, 2004; Shoemaker et al., 2014, Yost et al., 2017). Interventions such as exercise and improving performance in ADLs have been analyzed for the LVAD population, but lacked occupational therapy specific guidelines (Ben Gal et al., 2015; Bogaev et al., 2011; Casida et al., 2011; Evans et al., 2011; Hayes et al., 2012; Rogers e. al., 2010). In addition, many case study presentations and retrospective studies focused on FIM scores achieved in inpatient rehabilitation settings (Alsara et al., 2014; Chu et al., 2014; English & Speed, 2013; Nguyen & Stein, 2013; Nissinoff et al., 2011; Norton, Kuhar, & Poduri, 2015; Yost et al., 2017), while other case studies were 12 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE concerned with physical therapy and early mobility (Fernandez & Ford, 2014; Nicholson & Paz, 2010; Perme et al., 2006). These studies provided no support for occupational therapy services, nor did they describe the patients in-depth experience during the interventions. Current literature demonstrates a lack of patient-reported outcomes for patients with LVADs (Brouwers et al., 2011). Many studies related to the post-operative patient with a LVAD are quantitative in nature (Alsara et al., 2014; Bogaev et al., 2011; Chu et al., 2014; Hayes et al., 2012; Murray et al., 2008; Nguyen & Stein, 2013; Norton, Kuhar, & Poduri, 2015; Rogers et al., 2010; Shoemaker et al., 2014; Yost et al., 2017). Quantitative studies lack the deeper inquiry and understanding that can be derived from a qualitative research study. The few published qualitative studies are typically related to QOL, they are from the caregiver or family perspective, and the authors failed to provide insight that could have been offered from the patient, particularly directly after LVAD implantation, while the patient remained in the hospital (Baker et al., 2010; Brouwers et al., 2011; Casida et al., 2011; Casida et al., 2009; Iseler & Hadzic, 2015; Marcuccilli et al., 2014). There is clearly a need for additional patient-reported research from the individuals receiving LVADs. A gap in the literature exists for demonstrating the services and benefits occupational therapy could offer for LVAD intervention in the acute care setting. Further qualitative research delving into the in-depth patient perspective of occupational therapy services should to be pursued in order to better understand and serve the growing numbers of patients being implanted with LVADs. A qualitative investigation would provide occupational therapy practitioners with the insight needed to meaningfully assist patients who were adapting to the significant life change that occurs post LVAD implantation. To this end, the investigator of the current study 13 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE utilized interpretative phenomenology to answer the research question, What is the meaning of occupational therapy for patients with LVADs in acute care? Method Study Design Interpretative phenomenological approach (IPA) was the qualitative approach used in this study. With its psychological focus, Smith, Flowers, & Larkin (2009) described IPA as analyzing the experience of a major occurrence in someones life and his or her view of its significance. Specifically, IPA addresses a time of major change in ones life; for example, the researcher may want to understand the process relating to the placement of a LVAD and the changes that occurred postoperatively in a patients life. Interpretative phenomenology is said to be double hermeneutic because the researcher was attempting to find meaning in the participants meaning of their experience (Smith et al., 2009). Interpretative phenomenology based on Van Manens hermeneutic phenomenological approach (Van Manen, 1990) has been used to describe the experience of spousal caregivers for patients receiving LVADs (Casida, 2005) and the experience of LVAD patients during sex and intimacy (Casida, Marcuccilli, Peters, & Wright, 2011). It was anticipated that the deeper meaning derived from IPA would provide greater insight for occupational therapy practitioners regarding the significant life change endured by patients with LVADs, after being implanted with the device. This would help occupational therapy practitioners understand what was important to these patients, and provide insight into how they could better serve patients who had been implanted with a LVAD. The current study explored the meaning of occupational therapy for patients with a LVAD in the acute care setting. Sample Selection and Recruitment 14 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Participants In keeping with a qualitative approach (specifically IPA) a convenience sample of nine participants were selected, with the goal of finding common themes in the data. The study incorporated the following inclusion criteria, which was in keeping with prior studies by Casida (2005) and Casida et al. (2011): Male or female Able to follow 3-step commands 18 years of age or older Received a left ventricular assist device as either BTT or DT within the last 6 months Received occupational therapy, including shower kit training in the acute care setting, prior to discharge home. As the tenets of IPA emphasize a concentrated focus on receiving detailed accounts of the patient experience, with quality, not quantity being the primary goal, a sample of nine participants is appropriate for this study (Smith et al., 2009). Interviews were conducted with nine participants, including four women and five men. Participants had an age range of 19 78 years, with a mean age of 52 years. Six participants were African American and three participants were Caucasian. Seven participants had received HeartWare LVADs, while two had been implanted with HeartMate II devices. Four patients received LVADs as BTT, while five were designated as DT. The mean number of days post LVAD implantation was 85. While not all participants were married, they all had family support. Characteristic information is summarized in Table 1 (see Appendix E). Recruitment 15 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Institutional Review Board approval was obtained prior to recruitment, and data collection from both Emory Saint Josephs Hospital (ESJH) and the University of Indianapolis. Recruitment and data collection took place in the outpatient Congestive Heart Failure Clinic at ESJH during or after a follow up visit for patients who were post LVAD placement. Recruitment proceeded as follows: The primary investigator developed a flyer which included a short description of the study, general inclusion criteria, the nature of the procedures, estimated time commitment, location, and a short description of the investigator and her contact information (see Appendix A). The primary investigator provided copies of the flyer to the LVAD nurse/coordinator performing follow-up visits with patients. During the course of regularly scheduled heart failure clinic appointments, the LVAD nurse/coordinator gave the flyer to patients who potentially met the inclusion criteria. She provided limited information to the participant by way of a written script (see Appendix B). Patients who met the inclusion criteria were identified by the LVAD nurse/coordinator. The LVAD nurse/coordinator received permission from these patients for their contact information to be provided to the primary investigator, and told them that they would be contacted by the primary investigator (see Appendix B). The LVAD nurse/coordinator provided this information to the primary investigator using a password protected email account within the ESJH secure network. The LVAD nurse/coordinator made it clear to the patients that participation in the research study was voluntary. The primary investigator contacted these patients by telephone, to confirm their eligibility for the study and to answer any questions. When a patient expressed interest in participating in the research study, the primary investigator and patient set up a time to meet at the clinic to 16 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE complete the informed consent process and conduct the interview. The primary investigator then mailed a hardcopy of the informed consent document to the patient for review prior to the faceto-face informed consent process and interview. Data Collection Data collection consisted of one face-to-face semi-structured interview with each participant. Informed consent (see Appendix C) was obtained when the patients and primary investigator came together for the interview meeting. During the informed consent process, the primary investigator read through the informed consent document with the patients and responded to any questions or concerns. The primary investigator verbally reviewed the study title, purpose, information regarding how the patients information would be used, and included an explanation of how the patients confidentiality would be maintained. If the patients agreed to participate in the study, they signed the consent, along with primary investigator. For each participant, the semi-structured interviews took place in one of the heart failure clinics private consultation rooms at a time convenient to the patients. The interviews, which lasted and average of 30 minutes each, were face-to-face, audio-recorded, and consisted of a predetermined set of questions (See Appendix D). During the interviews, the primary investigator asked the participants for further clarification as needed, and asked probing questions to facilitate better understanding of the participants experiences. These procedures were consistent with those recommended by Smith et al. (2009) for an interpretative phenomenological analysis, and were similar to those utilized by researchers examining similar phenomenon (Casida, 2005; Casida et al., 2011). Participants began the interviews by reflecting on their experience in the acute care hospital setting. They all discussed their experiences just after surgery, with some reporting 17 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE difficulty remembering everything due to medications received or temporary altered mental status. In general the participants focused on interactions with hospital staff, the processes surrounding getting accustomed to their new LVADs, and the education and preparation they received prior to going home. Interviews were concluded with the participants descriptions of the transition and experience upon returning home. Prior to, and in between interviews, the primary investigator used bracketing procedures consisting of journaling, to express her own thoughts, opinions, reactions, and feelings in reaction to the interview process and content. Bracketing is considered hermeneutic or interpretive, as it helps to decrease the possibility of biases and assumptions regarding the experiences being studied, although a basic tenant of qualitative research is that some level of bias is to be expected when in-depth, personal information is sought from participants (Fischer, 2009). Bracketing, including journaling, allows researchers to acknowledge their opinions on a subject and then reflexively examine and interpret them as part of an ongoing process during data collection and analysis. By bracketing and reflecting on his or her assumptions, a researcher becomes more self-aware and is able to see different meanings in assumptions or perceptions, which may change ones viewpoint (Fischer, 2009). In this study, bracketing and disclosure of the investigators and colleagues backgrounds were used throughout data collection, analysis, and documentation of the findings. Data Analysis A coding system was used to identify participants on all transcripts and demographic characteristic logs in order to maintain confidentiality. After the interview data was collected in each session, the audio recordings were then transcribed verbatim into a word document, on a password protected computer, by the primary investigator. The accuracy of the transcribed data 18 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE was verified by the primary investigator by reading the transcripts and comparing them to the original recordings. The transcriptions were then immediately forwarded to two additional therapists (one occupational and one physical therapist) working at Emory Saint Josephs Hospital, who performed data analysis along with the primary investigator. The process of data analysis, which took place immediately after each interview and again after all interviews had occurred, was based on the sequence recommended by Smith et al. (2009) and included the following steps: The primary investigator and colleagues independently read and re-read the transcripts, which were de-identified, using numbers instead of participant names. The primary investigator and colleagues independently made written notes during the reading and re-reading of the transcripts, describing initial interpretations regarding the content, a practice referred to as memoing (Creswell, 2014). In keeping with IPA recommendations the analysts then highlighted emergent themes in the individual interviews by reading over initial notes and identifying concepts, categories, and patterns between comments made (abstraction) (Smith, et al., 2009). This finding of first level concepts and developing categories was also part of the open coding process frequently used in qualitative research (Biddix, 2009). The primary investigator and colleagues then searched in the individual interviews for connections across emergent themes for super-ordinate themes, exploratory comments, and emergent themes (subsumption). This was done by creating written category listings taken from the text of the original transcripts and written on pages of legal pads. To explore the relationships between themes (to garner all the important facets) the process of axial coding was used and allowed the qualitative researchers to expound on, or revise original themes that were 19 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE identified (Biddix, 2009). They looked for opposing relationships between themes (polarization), temporal or cultural themes (contextualization), the frequency of occurrence of emergent themes (numeration), and the positive or negative presentation of themes (function) (Smith, et al., 2009). After individually going through each case to highlight themes (within-case coding), the primary investigator and colleagues moved on to individual analysis of themes across cases (cross-case coding). Therefore, initial themes (open coding) and relationships between themes (axial coding) were identified for both within-case and cross-case coding. Looking at individual participants allowed for deeper understanding of the individual, but looking at multiple participants to find common themes allowed for a deeper understanding of the experience (Ayres, Kavanaugh, & Knafl, 2003). The primary investigator and colleagues performed bracketing (journaling and discussion) throughout the analysis in order to limit possible biases brought out by the data collection and analysis processes (Fischer, 2009). The primary investigator and colleagues then came together to look for patterns across cases by laying out the individual case theme lists and analyzing themes side by side, looking for connections, relationships, and frequency, in a categorizing list format. Re-labeling or re-naming of the themes occurred. This process allowed for triangulation of the data analysis to increase the trustworthiness of findings (Curtin & Fossey, 2007). This step of interpretation, allowed for a deeper analysis of the emergent themes for further interpretation and comparison. By reading the transcripts and going through the process of analysis, while bracketing and discussing the themes with each other, the primary investigator and colleagues were able to follow the double hermeneutic philosophy of IPA. This philosophy involved the analysts gaining their own perspective of the participants opinions of the care they received after LVAD implantation in 20 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE acute care. The benefit of this process is a better understanding and interpretation of the lived experience (Smith, et al., 2009). "Member checking was performed after the initial data analysis via phone contact between each participant and the primary investigator. Member checking is one method by which to increase the trustworthiness of a studys data analysis because it allows for the most accurate presentation of the participants experiences, even after analysis by others (Curtin & Fossey, 2007). During member checks with the participants, the primary investigator described the themes identified in each participants own case and how they were determined. The participants had the opportunity to offer clarification or correction on the findings for better understanding of emergent themes. Member checking was performed with seven participants upon completion of the data analysis and identification of the themes. Member checking could not be performed with two participants, as they could not be reached over the phone and did not return voice messages left on voicemail. Results Themes The findings in this study are presented as themes identified from participants descriptions of their experiences after being implanted with LVADs. Through the analysis of participants descriptions, four major themes emerged from the data: lifestyle change, caregiver support, physiological process, and occupational therapy relevance: hospital to home. The themes are presented below and illustrated by quotations from interview transcripts. Lifestyle Change All participants expressed having experienced a lifestyle change due to an awareness of the LVAD as part of their person, at all times. This new awareness started in the hospital and 21 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE continued through to their life at home. They described the feeling of the bags they were carrying around and the management of the bags. In addition, they discussed use of the equipment at home and when out in the community. One participant stated: ...Its just a, a total new lifestyle. With, you know, maintaining and taking care of all the equipment, making sure that I have my spare battery and chargers with me when I go out. Its, its a new lifestyle that you just have to adapt to. Always having equipment hanging around your neck, around your waist, and remembering to take the spare with you. Another participant remarked: Well, youve got this bag hanging around your neck everywhere you go and its, its 10 pounds, so its, its very heavy. Ive learned how to separate it into two separate bags so that I can distribute the load a little better, but its cumbersome. Its in the way and sleeping the bed with all this equipment, and having to make sure it doesnt fall off as youre turning over. Its harder to find clothes that fit around the drive line and that look decent to go out in public (laughs)you know that its, its just a trial and error thing to, to find out what I can wear and what I cantits just a change. Through the transition from hospital to home, all participants expressed coming to terms with the LVAD as part of getting back to their lives. One study participant said Its with me til death do me part A few participants gave thanks for having the LVAD in order to spend more time with family and live life. Several participants also described moving through the fear and overwhelming knowledge of having the new equipment responsible for their lives. A participant explained I mean I was terrifiedbut now Im okay and thats part of the processgetting to the point where you feel comfortable with your life changeand what you have to do, because it has to be automatic. Another participant said, I was just scaredmy 22 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE wife she was there wit me, and I was like baby are we, we gonna do, be able to do this?It only lasted for a couple of days, and after thatwe were good. As a whole, the participants expressed the importance of regaining their independence with their new LVAD lifestyle. The participants expressed that the teaching and preparation about the use of the LVAD at home was an important part of regaining their independence. One participant, when asked what was meaningful during the hospitalization after the LVAD was implanted said, The teaching processthey taught us how to change our lifestyle and live with the LVAD. To some participants, the teaching involved the LVAD equipment and components, Ah well its a lot to take in all at once swapping batteries and bags, and wall charger to battery and battery to wall chargerstuff that you for sure gotta do. Occupational therapy practitioners were identified as meaningful contributors in providing the teaching and preparation leading to increased independence for the participants, thus assisting the participants and families in their life change. Education regarding function and maintenance of LVAD equipment, exercises, home furniture adaptation, ADLs (specifically the shower process), and use of adaptive equipment in the hospital and then at home were mentioned by all participants. A participant and his spouse described some of the occupational therapy treatments received as, [the occupational therapist] helped you in your daily life, likehow to situate like you get your little table and how to transfer your bags and how to get ready for showerswell I mean its stuff I had to learn... Other participants discussed the occupational therapy teaching in regards to daily living skills: What you all do here is prepare me strength-wise and mentally-wise, as much as you can for going homeyou have to, you know, take care of yourself, have to make that its plugged in, you have to make sure, at night sometimes I have problems with pluggin into 23 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE the cord because theres, I have to go to the bathroom, its plugged in, unplug, plug in, unplug, but, umI realize that and its something Ive accepted by accepting the LVAD in the first place When asked about his experience with occupational therapy in the hospital, another participant stated, [the occupational therapy] got me back on track, as far as getting my dependency, doing for myself, and I think that, that was pretty much needed. As a group, the participants described a positive lifestyle change with the LVAD, expressing happiness with the care received in the hospital and their ability to return home to their lives. Even though they described some difficulty at the start, the education and preparation in the hospital, including that provided by occupational therapy practitioners, was a crucial identified element of the successful transition home to a new life. Caregiver Support Every participant that was interviewed, acknowledged that the caregiver support they received in the hospital and at home was meaningful for them. Caregivers were identified as healthcare professionals, including occupational therapy practitioners, and family members assisting in the care of the patients with LVADs. Family was identified as a big part of the caregiving experience by all participants. Support from family was described as just being there and going through the experience with the participant, to actual physical assistance while in the hospital following LVAD implantation. All but one participant described receiving help from family members of all ages in managing the new LVAD equipment and dressing. One study participant noted, My grandbabies run and get the batteries, they just think thats the most adorable thing to do to take care of mamaw. Other participants discussed family support with daily living skills, either 24 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE basic or instrumental, first in the hospital, then at home. A participant remarked, [my wife] assisted me too with the showerwell she washed my back and you know soaped me up Throughout the interviews, family support was mentioned with appreciation for their help, with some participants acknowledging the added burden to family members now that the participant had received an LVAD. Regarding the effects of the transition from hospital to home, one participant said, I dont think hard for meit might be a little difficult on my wife, cause I was a little bit, you know, I guess babyfied All participants expressed the importance of having family members involved in the training and preparation received from all healthcare professionals, including occupational therapy practitioners, during hospitalization. Characteristics of the healthcare professionals providing caregiver support in the hospital, as reported by the participants included caring, understanding, attentiveness, encouragement, motivation, and patience. One participant said, I went through the surgery and its that they cared, they would give um, advice on the things that I should, you know, I can do to better help myself everyone, every, everyone was helpful. All participants described positive caregiver experiences in the hospital setting, from the ICU to the telemetry floor. One participant stated, I mean actually cried, a cried a couple of times when ah, a couple of nurses I wouldnt see again, because theywere a big impact on meand my recovery. The participants were all able to name nurses, physicians, dietitians, psychologists, LVAD coordinators, therapists, social workers, and even environmental services technicians who assisted them while in the hospital. Seven participants expressed that the therapists or nurses understood the needs of the patients, therefore the patients needed to be open and receptive to what the caregiver was telling them. One participant remarked: 25 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Even though some of your patients, like me, could be grouchy and dont want to do itthinking you know I know how to do this No, let [the healthcare professional] help you, causeyour thing was to get me out of here so I wouldnt come back worse than I was beforeand it helped Occupational therapy practitioners were also identified as positive caregivers by all participants. Caregiving behaviors for occupational therapy practitioners were described by participants as being encouraging, caring, motivating, guiding, and professional. The occupational therapy practitioners caregiving abilities were described in regard to the education or training they provided to the participants, with one commenting: the [occupational therapist] that worked with us was very professional, you know he took his time with us and showed uswhat we need to do, you know, in, in the showers, and a how to take care of this [points to LVAD], um the dos and donts, the cans and cants, because its what motivates [pats the LVAD bag], you know keeps us going, so it was, it very professional Other participants remarked on the general support, consistency, and caring the occupational therapy practitioner provided them. One participant stated: [the occupational therapist] was very positive for me, um, and I hope the rest of the team is like that, and people can feel that because thats what we need, more than, than I think the doctors coming in and telling you everything is alright, is more of a comfort of everyday, and thats what the occupant, occupational therapist, um brings to the table, I feel. Physiological Process 26 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Physical recovery and activity immediately after LVAD implantation was a focus of all participants in the interviews. All participants described the general recovery process immediately after LVAD implantation, particularly when dealing with the successes and frustrations of the body healing. They also described physical activity they performed following surgery and the challenges they faced when trying to become active again. Some participants discussed issues with tape allergies, continued intravenous (IV) medication use, peripherally inserted central catheters, other IV line issues, or body pain. A participant stated: Its a ordeal and for me its a really big one because Im allergic to the adhesive and I have to have it from here on out, trying to keep my skin protected is, is a chore, um, I look like Ive been in a fight and I lost, but on the other hand, you know Im, Ive been told six months and it be good and that this point its getting better Another participant remarked, I had a lot of stuff, um, hooked up to my, hooked up to me, um, I couldnt do a lot of arm, arm exerciseit was more, more of a pushing my little [IV pole]and walking the halls. Other participants acknowledged challenges associated with loss of appetite and adapting sleeping behaviors for the LVAD. One participant stated, So, I had to kinda get myself, make myself, pump myself up to kinda eat, like cause I didnt have a appetite. Physical strength of upper and lower extremities and overall activity endurance were other areas of focus for participants, particularly when getting out of bed. Many described the process of getting up from their bed as particularly challenging because they had to deal with the new equipment, which added weight to their already weakened bodies, and then the lack of strength in the upper and lower limbs making the task more difficult. They described sitting on 27 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE the edge of the bed, moving to the recliner chair, and finally ambulating out into the hall and navigating stairs. One participant described this experience: I was able to go up steps, not like I wanted to, it, you know, before all this got started I was able to run up the steps and run it down. No. Ah, when I go up the steps Im gonna stay up there for a while, when I come down, then I stay downstairs Despite just having undergone surgery, many participants expressed surprise that their bodies could not do more, as they felt better overall than prior to LVAD implantation. A younger participant said Cause I actually thought that I was like Im so ready to get out of bed, Im so ready to do this, but you try to get up and you feel like an old man Almost all participants mentioned occupational therapys role in providing exercise programs to increase strength. Occupational therapy practitioners were seen as teachers providing information on regaining strength, but also motivating the participants to move more and be active with the new LVAD. In addition to strengthening, occupational therapy practitioners were noted as providing activities for range of motion, fine motor coordination, and pain relief. One participant reported [the occupational therapist] had gave me all these things to do my strength with, like the little clay stuff, andtied some stuff to my bed where I can like, do like reps or something [mimicked using theraband attached to bed for arm exercises]. Another participant stated: [the occupational therapist] gave me a sponge and told me to squeeze it, and even though I was squeezing it, I wasnt doing it all the time and the first thing [the occupational therapist] said was see this is why, because actually, um putting the buckles on the bags and doing certain things you really needed the strength in your hands. 28 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Several participants reported neck, body, or shoulder pain and soreness following surgery and while in the hospital. They described how the exercises given by the occupational therapy practitioner helped with pain relief, with one participant saying, with having the shoulder pain, that it can get stiff, so with me doing the exercises, it, it keeps me from having to take the pain medicine to where I can, you know, go about my day. Another participant explained: the first thing [the occupational therapist] taught me, that I loved, was about my neck, because this bag [points to LVAD bag] is so heavy, so [the occupational therapist] had me do the turns and the ups and downs and those things really helped, um because in the beginning it weighs about 10 pounds and you feel itand now its not as bad, and the funny thing is (chuckles), um that when it starts bothering me I start doing those exercises and it still helps. Occupational Therapy Relevance: Hospital to Home As described through the other themes identified above, occupational therapy services played a role in the hospital process of preparing the participants for their new lives and the transition to home. Positive experiences were described, and all participants commented that the guidance and education provided by the occupational therapy practitioners was beneficial, when incorporating the LVAD equipment and accessories (power-based unit, batteries, driveline, controller, bags) into their daily routine. All participants agreed that the occupational therapy services provided in the hospital were applicable to their daily lives and were useful for them once they returned home. When asked their opinion of the applicability of occupational therapy services received in the hospital to their daily life, one participant remarked: Oh absolutely, yeah, ah absolutely. I had to know how to operate my equipment, how to take a shower, and, um, needed to be able to function, um to do my daily routine. [The 29 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE occupational therapist] had goals set up for you and you had to check each one off before you could go. I was able to meet mine Some participants referred to the benefit of occupational therapy as assisting in regaining independence with their basic ADLs, including dressing alternatives and safety. One participant said [The occupational therapist] showed me some good stuff too, how to get my sock on with the puller upper [sock aide] and the grabber thing [reacher] I still need the reacher since Im not supposed to bend over. All participants remembered the shower process with the LVAD and related it as part of occupational therapy experience they had in the hospital. They were all able to give a description of the training required to protect the LVAD and batteries and discuss the precautions for taking a shower. Detailed descriptions for covering the drive line and dressing were given by a few participants. In addition, all participants told of the process of transferring the LVAD controller and batteries from the Go Bag to the Shower bag. Many reported that this change in shower preparation added increased time to the daily routine. One participant noted, Its a bit of an ordeal to have to do all that just to take a shower, but its well worth it. Most participants reported the use of adaptive equipment in the shower (most commonly the shower chair) and the use of a hand held shower for increased ease and independence. The use of these pieces of equipment and having overall larger showers or tub/showers at home, with the shower preparation in the hospital, increased the comfort of the participants once they returned to the home environment. As a group, the participants were effusive in their praise for the first shower taken in the hospital. Comments included, it was wonderful, it was nice to just feel clean again, I felt normal, I was like yes!, and I was fired up. All participants also agreed that it 30 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE was important to experience the actual shower at the hospital prior to going home. One participant expressed the view of a few others, by explaining that the shower taken in the hospital helped in decreasing the anxiety of the shower process, I thought the shower bag was not gonna work and stuff was going to get wet and all that, but after I took the shower I didnt have any more fear. Another participant summarized the importance of the actual hospital shower occurring: thats why its so important to, to get that shower, you, it, it takes away your fear of everything getting wet, it lets you know that hey, you can take a shower, and be okay, and all you have to do is cover thoroughlyits just like the LVAD they tell you all about it, but until you get into it, its still not the same The participants as a whole viewed occupational therapy services and having an actual shower in the hospital as contributing to their success on returning home. All participants considered occupational therapy services a meaningful part of each of the identified themes discussed above lifestyle change, caregiver support, physiological process, and general preparation for home, including the shower process. Discussion Using the interpretative phenomenological approach, this study expounded on prior literature and served as the first qualitative study to explore the patients with LVADs perspectives on the afore-mentioned themes with regard to occupational therapy services in the acute care setting. All participants reported that occupational therapy services meant providing support to patients and families through positive caregiving, involving education and training of LVAD equipment and processes, and including interventions involving physical activity and ADLs, assisting with the new life change (see Appendix F). Through the use of in-depth 31 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE interviews, the results from this study provide an increased understanding of the role occupational therapy plays when caring for patients after they have been implanted with LVADs. Patients with LVADs see occupational therapy practitioners as offering caregiving support through the teaching and physiological interventions they provide, starting in the hospital setting. These occupational therapy interventions and preparations for home, including shower training, were identified as beneficial to those wishing to regain their independence and return home safely after device implantation. Specifically, the participants perspectives provided information regarding occupational therapy interventions they deemed important to helping patients regain their function and return to their lives at home. Participants in the current study, as a whole, identified numerous lifestyle changes they had to undergo as a part of receiving the LVAD. Awareness of surroundings, awareness and maintenance of the equipment, the effect of the equipment on ADLs and sleep, the anxiety of managing the new equipment, home modification, the importance of regaining independence with the LVAD, and the importance of education and preparation for home, were all identified areas of lifestyle change by the participants. The current study findings were consistent with prior literature addressing lifestyle change (Baker et al., 2010; Brouwers et al., 2011; Casida et al., 2011; Casida et al., 2009; Iseler & Hadzic, 2015; Marcuccilli et al., 2014). However, the prior studies were primarily caregiver-reported perceptions and focused mostly on changes that were needed once the participants were at home. The findings of this study add to the prior literature by demonstrating specifically how occupational therapy practitioners assisted the participants while in the hospital, with crucial education regarding the LVAD and its components. This occupational therapy intervention eased the life changes of participants, by letting them and their families know what to expect upon return home. The occupational therapy 32 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE practitioners were able to train the participants and family members regarding the adaptation of ADLs and adaptations within the home environment, facilitating a safe return to independence. Specifically, occupational therapy services addressed management of the LVAD power-based unit and its batteries, use of adaptive equipment for ADLs, alternate clothing choices and safe dressing. A discussion of possible alterations to the home environment and suggestions of furniture for equipment storage and safe maneuvering within the home were also reviewed. Prior qualitative studies have discussed caregivers in regard to caregiver burden following the return home after a patient received a LVAD (Baker et al., 2010; Brouwers et al., 2011; Iseler & Hadzic, 2015). One such study even touched on the importance of hospital caregivers supporting patients and families with the transition home after LVAD implantation (Casida et al., 2011). However, this was again discussed in relation to relieving caregiver burden. Other studies discussed the importance of the interdisciplinary team to support patients and families after LVAD implantation (English & Speed, 2013; Nguyen & Stein, 2013; Shoemaker et al., 2014). However, these studies primarily just named the healthcare team members involved in the care of patients with LVADs, provided a general description of services offered to the patients, or focused on the services provided to the patients and families by the primary researchers discipline, none of which were occupational therapy. In the current study participants corroborated prior research, which focused on the importance of family as caregivers (Baker et al., 2010; Marcuccilli et al., 2014). Family caregiving was described as playing a major role in the successful re-integration of patients with LVADs into their homes and communities. However, building on previous research, this study yields information from the patients perspectives regarding the type of caregiver support, in the hospital setting with collaborative training from occupational therapy practitioners, which is 33 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE meaningful to patients receiving LVADs. In this study, all of the participants stressed the importance of the quality of caregiving and instruction provided by various healthcare providers, in the acute care environment. The participants described the characteristics that the hospital caregivers demonstrated, which led to their added comfort and ability to overcome new challenges presented after LVAD implantation. In addition, the current study provides new information to the LVAD literature regarding the important role that occupational therapy practitioners play as one of the caregivers on the interdisciplinary team. All participants described the positive feelings and experiences the occupational therapy practitioners inspired, along with their effectual characteristics. Guidance with the new LVAD equipment and ADLs, coupled with the consistency of personnel with daily visits, were key factors identified as contributing to a successful occupational therapy experience for the patients, their families, and the occupational therapy practitioners. In addition, participants discussed beneficial interventions provided by occupational therapy services including strengthening, fine motor coordination, range of motion, and home modification and adaptive equipment recommendations, which were important to their new lives. Participant identification of the importance of the occupational therapy caregiver experience provides evidence to support occupational therapy as one of the critical services involved in caring for patients with LVADs, which is in keeping with existing research (Abramson et al., 2012; McIntyre, 2007; Padmanabhan & Thankachan, 2011; Shepherd & Wilding, 2004). Physical activity and the physiological process following LVAD implantation have been addressed in numerous prior studies (Abshire et al., 2014; Ben Gal et al., 2015; Bogaev et al., 2011; Evans et al., 2011; Freeman & Maley, 2013; Hayes et al., 2012; Nicholson & Paz, 2010; Rogers et al., 2010; Shoemaker et al., 2014). Whereas the prior research was primarily 34 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE quantitative and did not report on patients perceptions of physical processes after LVAD placement, the current study adds to this prior knowledge with the addition of new participantreported information. All participants in the current study referenced their physical state while in the hospital. They expressed the importance of mobilization and increasing strength, endurance, and range of motion to enable their independence with the new LVAD and its components. These findings provide additional support to prior quantitative findings (Ben Gal et al., 2015; Bogaev et al., 2011; Evans et al., 2011; Hayes et al., 2012; Rogers et al., 2010), which demonstrated the benefit of exercise following LVAD implantation, by adding the lived experience of the benefits of physical activity, as reported by these patient participants. New information regarding the benefits of exercise and physical activity intervention provided by occupational therapy services, for patients with LVADs, was brought to light by this study. Prior occupational therapy publications included exercise or physical activity as recommendations for possible occupational therapy intervention with these patients (Abramson et al., 2012; McIntyre, 2007; Padmanabhan & Thankachan, 2011; Shepherd & Wilding, 2004). The participant reports in the current study provide evidence to substantiate those recommendations. Occupational therapy exercise and physical activity interventions cited as being beneficial by participants in this study, included range of motion of upper and lower extremities and the neck, fine motor coordination tasks, and upper extremity strengthening with various forms of resistance; the purpose being to assist with the manipulation of the LVAD components, relieve pain, and improve energy levels for increased independence with daily life. Once the participants were able to see the results of these interventions with regard to purposeful activity, they better understood the need for the interventions and were more motivated to perform them. These specific treatments and their purposes support the interventions used with 35 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE the LVAD population in prior occupational therapy publications (Abramson et al., 2012; McIntyre, 2007; Padmanabhan & Thankachan, 2011). Though therapists may be reluctant to use exercise alone, due to its lacking as an occupation-based activity, exercise used therapeutically as a preparatory intervention, can enhance body functions and performance skills, enabling the patients participation in meaningful occupations (AOTA, 2014). The therapeutic exercises described by the participants in the current study are in keeping with the AOTAs (2014), definition of preparatory interventions, improving the motor skills of coordination, manipulation, moves, and endurance, allowing for the patients to manipulate and use the LVAD equipment needed to function in daily life. Prior literature published for occupational therapy practitioners stressed the importance of occupational therapy interventions, including ADLs, when working with patients receiving LVADs (Abramson et al., 2012; McIntyre, 2007; Padmanabhan & Thankachan, 2011; Shepherd & Wilding, 2004). In addition, Casida et al. (2011) reported that caregivers of patients with LVADs described that ADLs required a lot of adjustment following implantation and the return home. The current study supports prior literature, with positive descriptions from patients regarding their experience with working on their ADLS and developing new performance patterns with occupational therapy in the hospital setting. Participants described the beneficial education provided by occupational therapy practitioners, developing new routines and habits to use adaptive equipment for dressing and showering, in order to reach lower body parts and for safety. This is similar to interventions described in prior occupational therapy publications (McIntyre, 2007; Padmanabhan & Thankachan, 2011; Shepherd & Wilding, 2004). The current study demonstrated that the participants highly valued being able to participate in a real shower while they were in the hospital, as opposed to a simulated shower or 36 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE sponge bathing, because it allowed them to better transfer the skill to their home environment. This is new information from the patient-perspective that supports prior occupational therapy literature recommending an actual shower in the healthcare facility, in order to prepare patients for a safe transition home (Padmanabhan & Thankachan, 2011; Shepherd & Wilding, 2004). Participants in the current study gave descriptions of the shower process similar to that provided by Padmanabhan and Thankachan (2011), including the coverage of the dressing and use of the shower bag to protect the LVAD components. The new discovery of the importance of the actual shower in the hospital for adequate preparation to return to ADL occupations within the home, and for reducing concerns regarding protection of the LVAD and dressing when wet, provides evidence to support the interventions described by prior occupational therapy literature (Padmanabhan & Thankachan, 2011; Shepherd & Wilding, 2004). Limitations Although the participants in this study provided an in-depth look into their experiences in the hospital with occupational therapy services, following their LVAD implantation, the sample consisted of patients recruited from a single medical center, limiting the generalizability to other recipients of LVADs. Study participants responded to questions about their experiences in the hospital following LVAD implantation and their interaction with occupational therapy in a single interview. An attempt was made to limit the effects of memory by including only participants who had received LVADs within the last six months. However, these retrospective accounts were dependent on participants memories of the activities in the hospital and any issues that these individuals were experiencing at the time of interview. Participant responses could also be skewed toward positive responses, given that the primary investigator was identified as an 37 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE occupational therapy practitioner and represented the rehabilitation department from which the participants received services. (Though it should be noted that the primary investigator was not involved in the care of any of the participants who were interviewed.) Implications for Practice and Future Research Despite the limitations listed above, the findings of the present study begin to bridge the gap of knowledge on the meaning of occupational therapy services for patients with LVADs in the acute care setting. These study findings demonstrate the need for occupational therapy intervention in the hospital setting to include beneficial patient and family education, strengthening, fine motor coordination, range of motion, home modification recommendations, and adaptive equipment recommendations, when working with patients receiving LVADs. These interventions, addressing body functions and improving performance motor skills, or assisting in the creation of new performance patterns, allow patients with LVADs to return to their meaningful occupations of health management and maintenance, and ADLs using the LVAD equipment and accessories. Participant reporting in this study demonstrates the need for occupational therapy practitioners to work with patients with LVADs, in order to address ADLs (and specifically to perform actual showers) prior to discharge home, for improved patient preparation and independence. Further empirical research is warranted to examine the effectiveness of occupational therapy interventions in general. In particular, studies comparing the outcomes for those receiving showers prior to discharge from the hospital, versus those only simulating the shower process would help understanding of patients needs and abilities post LVAD implantation. Accordingly, it would be beneficial for the experience of patients with LVADs 38 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE who did not receive an actual shower in the acute care setting prior to discharging home to be further understood from a qualitative perspective. In addition, further research into the benefit of home health occupational therapy services, to aid the transition from hospital to home, is needed to inform occupational therapy practitioners of long-term management needs for patients post LVAD implantation. Future research comparing drive-line dressing infection rates for those receiving shower training versus those that do not could be useful in possibly decreasing hospital readmission rates for individuals with LVADs. Future research could also be performed with retrospective analyses of patients with LVADs who received occupational therapy services versus those that did not and the effects on length of stay and readmission rates. From a patient perspective, the study shows that occupational therapy is an important part of the interdisciplinary team, working with patients with LVADs early after implantation. Occupational therapy governing organizations, education programs, students, and practitioners should be aware of this growing patient population and the specific occupational therapy services that can be offered to support them. Conclusion This study addresses the lack of knowledge regarding the experience of patients with LVADs, who have received occupational therapy services as part of their hospitalization, post implantation. The study expands our understanding of the processes and preparations required to ensure a successful return home for these patients. LVAD implantation is a significant, life changing event affecting patients body functions and performance skills. Lifestyle changes are required following LVAD implantation, and the education and training prior to discharge from the hospital, including that provided by occupational therapy practitioners, are important pieces in the journey of getting back to daily occupations. 39 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE These study participants identified occupational therapy practitioners as an important member of the caregiver and interdisciplinary team, serving patients receiving LVADs and preparing them for the changing performance patterns of their lives. The study also highlights the patient-perceived, beneficial interventions provided by occupational therapy services in the acute care environment. Occupational therapy practitioners, educators, and students can use this information to recognize and anticipate the challenges experienced by patients receiving LVADs. An increased awareness of the LVAD experience will allow for quality patient-centered care and improved outcomes for these patients going forward. 40 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE References Abramson, M., Harvey, J., Greenfield, M., Lauman, S., & Metzler, D. (2012). A case study of OT intervention for a recipient of a left ventricular assist device. Advance Healthcare Network for Occupational Therapy Practitioners, 28(16), 16. Abshire, M., Dennison Himmelfarb, C. R., & Russell, S. D. (2014). Functional status in left ventricular assist device-supported patients: A literature review. Journal of Cardiac Failure, 20(12), 973-983. Alsara, O., Reeves, R. K., Pyfferoen, M. D., Trenary, T. L., Engen, D. J., Vitse, M. L., Perez Terzic, C. M. (2014). Inpatient rehabilitation outcomes for patients receiving left ventricular assist device. American Journal of Physical Medicine and Rehabilitation, 93(10), 860-868. American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1S48. http://dx.doi.org/10.5014/ajot.2014.682006 American Occupational Therapy Association. (2014). Scope of Practice. Retrieved from: http://ajot.aota.org/article.aspx?articleid=1934867 Ayres, L., Kavanaugh, K., & Knafl, K. (2003). Within-case and across-case approaches to qualitative data analysis. Qualitative Health Research 13(6), 871-883. Baker, K., Flattery, M., Salyer, J., Haugh, K., & Maltby, M. (2010). Caregiving for patients requiring left ventricular assistance device support. Heart & Lung, 39(3), 196-200. Ben Gal, T., Piepoli, M. F., Corra, U., Conraads, V., Adamopoulos, S., Agostoni, P., Jaarsma, T. (2015). Exercise programs for LVAD supported patients: A snapshot from the esc affiliated countries. International Journal of Cardiology, 201, 215-219. 41 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Biddix, J. (2009, July 19). Qualitative coding & analysis. Research Rundown. Retrieved from https://researchrundowns.com/qual/qualitative-coding-analysis/ Bogaev, R. C., Pamboukian, S. V., Moore, S. A., Chen, L., John, R., Boyle, A. J., Frazier, O. H. (2011). Comparison of outcomes in women versus men using a continuous-flow left ventricular assist device as bridge to transplantation. The Journal of Heart and Lung Transplantation, 30(5), 515-522. Brouwers, C., Denollet, J., de Jonge, N., Caliskan, K., Kealy, J., & Pedersen, S. S. (2011). Patient-reported outcomes in left ventricular assist device therapy: A systematic review and recommendations for clinical research and practice. Circulation: Heart Failure, 4, 714-723. Buck, L. A. (1998). Physical therapy management of three patients following left ventricular assist device implantation: A case report. Cardiopulmonary Physical Therapy 9(2), 8-14. Casida, J. (2005). 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Curtin, M., & Fossey, E. (2007). Appraising the trustworthiness of qualitative studies: Guidelines for occupational therapists. Australian Occupational Therapy Journal, 54, 88-94. English, M. L., & Speed, J. (2013). Effectiveness of acute inpatient rehabilitation after left ventricular assist device placement. American Journal of Physical Medicine and Rehabilitation, 92, 621-626. Evans, J., Tsekouras, C., Johnson, K., & Marx, M. (2011). Effect of early mobilization efforts on post-operative length of stay after cardiac transplant and left ventricular assist device surgery. Critical Care Nurse, 31(2), 50-51. Fernandez, N., & Ford, K. (2014). Early progressive mobilization and physical therapy management in a patient with a total artificial heart device. Cardiopulmonary Physical Therapy Journal, 25(1), 23-28. Fischer, C. (2009). Bracketing in qualitative research: Conceptual and practical matters. Psychotherapy Research, 19(4-5), 583-590. Freeman, R., & Maley, K. (2013). Mobilization of intensive care cardiac surgery patients on mechanical circulatory support. Critical Care Nursing Quarterly, 36(1), 73-88. Hayes, K., Leet, A. S., Bradley, S. J., & Holland, A. E. (2012). Effects of exercise training on exercise capacity and quality of life in patients with a left ventricular assist device: A preliminary randomized controlled trial. The Journal of Heart and Lung Transplantation, 31(7), 729-734. Hollander, S. A., Hollander, A. J., Rizzuto, S., Reinhartz, O., Maeda, K., & Rosenthal, D. N. (2014). An inpatient rehabilitation program utilizing standardized care pathways after 43 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE paracorporeal ventricular assist device placement in children. The Journal of Heart and Lung Transplantation, 33, 587-592. Humphrey, R., Buck, L., Cahalin, L., & Morrone, T. (1998). Physical therapy assessment and intervention for patients with left ventricular assist devices. Cardiopulmonary Physical Therapy Journal, 9(2), 3-7. Iseler, J., & Hadzic, K. G. (2015). Developing a kit and video to standardize changes of left ventricular assist device dressings. Progress in Transplantation, 25(3), 224-229. Lietz, K. (2010). Destination therapy: Patient selection and current outcomes. Journal of Cardiac Surgery, 25, 462-471. Marcuccilli, L., Casida, J., Bakas, T., & Pagani, F. D. (2014). Family caregivers inside perspectives: Caring for an adult with a left ventricular assist device as a destination therapy. Progress in Transplantation, 24(4), 332-340. McGarrigle, L., & Caunt, J. (2016). Physical therapist-led ambulatory rehabilitation for patients receiving centrimag short-term ventricular assist device support: Retrospective case series. Physical therapy, 96(12). McIntyre, M. (2007). Keeping vad patients functional: OTs bring unique skills when working with patients with ventricular assist devices. Advance Healthcare Network for Occupational Therapy Practitioners, 23(5), 43. Murray, M. A., Osaki, S., Edwards, N. M., Johnson, M. R., Bobadilla, J. L., Gordon, E. A., Kohmoto, T. (2009). Multidisciplinary approach decreases length of stay and reduces cost for ventricular assist device therapy. Interactive CardioVascular and Thoracic Surgery, 8, 84-88. 44 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Nguyen, E., & Stein, J. (2013). Functional outcomes of adults with left ventricular assist devices receiving inpatient rehabilitation. American Academy of Physical Medicine and Rehabilitation, 5, 99-103. Nicholson, C., & Paz, J. (2010). Total artificial heart and physical therapy management. Cardiopulmonary Physical Therapy Journal, 21(2), 13-21. Nissinoff, J., Tian, F., Therattil, M., Salvarrey, R. M., & Lee, S. W. (2011). Acute inpatient rehabilitation after left ventricular assist device implantation for congestive heart failure. PM&R: The Journal of Injury, Function, and Rehabilitation, 3(6), 586-589. Norton, D., Kuhar, S., & Poduri, K. R. (2015). Functional outcomes in patients with a left ventricular assist device. Journal of Physical Medicine, Rehabilitation, & Disabilities, 1(007), 1-5. Padmanabhan, K., & Thankachan, S. (2011). Occupational therapy in cardiac care: Left ventricular assistive devices. OT Practice, 15-20. Perme, C., Southard, R., Joyce, D., Noon, G., & Loebe, M. (2006). Early mobilization of LVAD recipients who require prolonged mechanical ventilation. Texas Heart Institute Journal/From The Texas Heart Institute of St. Lukes Episcopal Hospital, Texas Childrens Hospital, 33(2), 130-133. Rogers, J. G., Aaronson, K. D., Boyle, A. J., Russell, S. D., Milano, C. A., Pagani, F. D., Slaughter, M. S. (2010). Continuous flow left ventricular assist device improves functional capacity and quality of life of advanced heart failure patients. Journal of the American College of Cardiology, 55(17), 1826-1834. Shepherd, J., & Wilding, C. (2006). Occupational therapy for people with ventricular assist devices. Australian Occupational Therapy Journal, 53, 47-49. 45 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Shoemaker, M. J., Gaskell, A., VandeBunte, K., Sefton, D., McLeod, J., Karia, D. H., Khaghani, A. (2014). Early ambulation predicts length of stay and discharge location following left ventricular assist device implantation. Cardiopulmonary Physical Therapy Journal, 25(3), 75-84. Slaughter, M. S., Pagani, F. D., McGee, E. C., Birks, E. J., Cotts, W. G., Gregoric, I., ... & Acker, M. A. (2013). HeartWare ventricular assist system for bridge to transplant: Combined results of the bridge to transplant and continued access protocol trial. The Journal of Heart and Lung Transplantation, 32(7), 675-683. Smith, J., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. London, U.K.: SAGE. Stewart, G. C. & Givertz, M. M. (2012). Advances in mechanical circulatory support: Mechanical circulatory support for advanced heart failure: Patients and technology in evolution. Circulation, 125, 1304-1315. Van Manen, M. (1990). Researching lived experience: Human science for an action sensitive pedagogy. London, Ontario: Althouse Press, Faculty of Education, University of Western Ontario. Yost, G., Coyle, L., Milkevitch, K., Adair, R., Tatooles, A., & Bhat, G. (2017). Efficacy of inpatient rehabilitation after left ventricular assist device implantation. Physical Medicine & Rehabilitation Journal, 9(1), 40-45. 46 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Appendix A RESEARCH PARTICIPANTS NEEDED Have you or an immediate family member been implanted with a LVAD in the last 6 months? We are conducting a study about persons with LVADs perceptions of the care they received following LVAD placement. In particular we are looking for persons with LVADs views about the occupational therapy they received while in the hospital. As a participant in the study, you will be asked to participate in: A 45-90 minute face-to-face, audio recorded interview, directly after a Heart Failure Clinic visit. Elizabeth Wyble, OTR/L and Doctoral Student in Health Sciences will be conducting this study. If you are interested in participating or have more questions, please notify your LVAD nurse/coordinator or contact Elizabeth at (678) 843-5791 to confirm eligibility for the research. This study is being conducted in collaboration with Emory Saint Josephs Hospital and the University of Indianapolis. This study has been approved by the Emory Saint Josephs Hospital and University of Indianapolis Institutional Review Boards, study # 051-16-2. Your personal information will be kept confidential. 47 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Appendix B Consent for Primary Investigator Contact One of the occupational therapists at Emory Saint Josephs Hospital is performing a study regarding patients with LVADs. She is looking for participants. If you are interested in participating, please provide your contact information below and sign to provide your consent for her to contact you. We will pass your contact information onto her by way of a phone call. Your participation is voluntary and is not a requirement for your continued treatment at the Emory Saint Josephs Heart Failure Clinic. Name: ______________________________________________________ Address: ____________________________________________________ ___________________________________________________________ Phone Number: ______________________________________________ Email: ______________________________________________________ _______________________________ Print Name _______________________________ _________________________ Signature Date 48 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Appendix C Institutional Review Board of Emory Saint Josephs Hospital Consent Form to Participate In Research (Do Not Sign Unless You Have Read The Document And Are In The Presence Of The Primary Investigator). Study Title: What is the Meaning of Occupational Therapy for Patients Receiving a Left Ventricular Assist Device in the Acute Care Setting? Principal Investigators: Elizabeth Wyble, OTR/L Experts/Colleagues: Lisa Borrero, PhD., Jennifer Fogo, PhD, OTR, Cheryl Bittel, MSN, APRN-CCNS, NP-C, CCRN, Katie Caldwell, MS, OTR/L, Deborah Mann, BS, PT I. Introduction to Participate: You are being invited to participate in the study titled What is the Meaning of Occupational Therapy for Patients Receiving a Left Ventricular Assist Device in the Acute Care Setting? because: You have received a left ventricular assist device (LVAD) in the last six months Received occupational therapy during your hospitalization at Emory Saint Josephs Hospital Occupational therapy (OT) is commonly received post-operatively after LVAD placement, in the hospital setting. The goal of the OT is to improve functional independence with daily living skills in preparation for return to the home and community for the patient receiving a LVAD. The investigators know that OT is provided to each patient, but the experiences of each patient are different. Therefore the goal of the current study is to determine the meaning of occupational therapy for those implanted with a left ventricular assist device. The research is being conducted by Elizabeth Wyble, OTR/L in coordination with Katie Caldwell, MS, OTR/L, Deborah Mann, BS, PT, and Cheryl Bittel, MSN, APRN-CCNS, NP-C, CCRN at Emory Saint Josephs Hospital and in coordination with Lisa Borrero, PhD. and Jennifer Fogo, PhD, OTR at the University of Indianapolis. More information about the research study can be received from the principal research investigator. II. Research Study Description To participate you will be asked to provide a signature of agreement to determine if you will take part in a private, audio recorded, interview session of approximately 45-90 minutes. You will be asked questions regarding your hospitalization after your LVAD was implanted. III. Risks There is no identified risk by participating in the study. 49 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE IV. Voluntary Participation and Withdrawal Your decision as to whether to participate in this Research Study is entirely voluntary and you are under no obligation to consent or participate in this Research Study. If you choose to participate in this Research Study, you have the right to withdraw from participation at any time for any reason. Your decision not to participate or to withdraw from participation will not result in any penalty to you, loss of benefits to which you are otherwise entitled, or adversely affect your access to health care or treatment by your physician, nurse, or therapist. You may ask questions about the Research Study at any time. You may receive information about your rights as a research participant from the Institutional Review Board (IRB) of Emory Saint Josephs Hospital of Atlanta, Inc. at (678) 843-7767. The investigator may withdraw you from the study at any time. V. Benefit(s) No benefit from your participation is guaranteed. The results of the Research Study may help to improve patients care after LVAD implantation, in the hospital setting. VI. Compensation You will not receive payment and/or compensation for participating in this Research Study. Information about any research related risks can be received from the principal investigator. CONFIDENTIALLITY AND AUTHORIZATION TO USE AND DISCLOSE HEALTH INFORMATION Any information obtained as a result of your participation in this research will be kept as confidential as legally possible. A copy of your signed Research Consent form and the Study data will be subject to Emory Saint Josephs Hospital confidentiality policies. Federal law requires that your privacy, security, and unauthorized access to your health information will be protected. You may change your mind and revoke (take back or withdraw) this Authorization at any time and for any reasons. To revoke this Authorization, you must write to: Elizabeth Wyble, OTR/L, Rehabilitation Services Department, Emory Saint Josephs Hospital, 5665 Peachtree Dunwoody Rd., NE, 5th Floor, Room 5C, Atlanta, GA 30342. However, if you revoke this Authorization, the researchers and other parties listed may continue to use and disclose the information they previously collected as permitted by the Informed Consent Form. Information that has already been de-identified cannot be taken back. To maintain the integrity of this Research Study, you generally will not have access to results related to this research until the Study is complete. If all other information that does not or can identify you is removed from your health information, the remaining information will no longer be subject to this Authorization and may be used or disclosed for other purpose. 50 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Your health information will be used or disclosed when required by law. If you have questions about the use of your information, you can call Elizabeth Wyble, OTR/L at (678) 843-5791 or the Emory Saint Josephs Hospital Privacy Officer at (404) 778-2757. This Authorization does not have an expiration (ending) date. You will be given a copy of this Authorization after you have signed it. _______________________________ ________________________________ Signature of Participant Date _______________________________ ________________________________ Signature of Person Obtaining Consent Date I hereby acknowledge that the informed consent process has been completed prior to initializing any research procedures. _______________________________ ________________________________ Signature of Investigator Date _______________________________ Print Name of Investigator 51 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Appendix D Interview Questions 1. What was your experience in the hospital after your LVAD was implanted? 2. What was or was not meaningful to you during your hospital stay after your LVAD was implanted? 3. What was your experience upon returning home after your LVAD was implanted? 4. What was your experience with occupational therapy in the hospital? 5. What is your opinion of the applicability of the occupational therapy you received to your daily life? 6. What was your experience when showering with the LVAD in the hospital? 7. What was the difference between showering in the hospital versus at home? Probing or clarification questions: 1) Could you say more about that? 2) Could you explain that further? 3) Are you talking about or do you mean _____? 4) Could you talk more about _____? 52 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Appendix E Characteristics of Participants in Study Table 1 Characteristics of Participants in Study Participant Age Marital Status Sex Race Reason for LVAD Type of LVAD Time with LVAD 1 56 Single F Black DT HeartWare 106 days 2 47 Married M Black BTT HeartWare 68 days 3 45 Married M Black DT HeartMateII 120 days 4 70 Married M Black DT HeartWare 124 days 5 70 Married F White DT HeartWare 131 days 6 19 Single M Black BTT HeartWare 155 days 7 78 Widow F White DT HeartMateII 22 days 8 50 Married M White BTT HeartWare 27 days 9 31 Married F Black BTT HeartWare 15 days Abbreviations: F, female; M, male; DT, destination therapy; BTT, bridge to transplant; LVAD, left ventricular assist device. 53 OCCUPATIONAL THERAPY AND VENTRICULAR ASSIST DEVICE Appendix F The Meaning of Occupational Therapy for Patients with Left Ventricular Assist Devices Facilitating Life Change: Hospital to Home Educator and Guide Physical Activity Occupational Therapy Caregiver: Support Motivation Encouragment Activities of Daily Living *Shower Figure 1. The meaning of occupational therapy (OT) for patients with left ventricular assist devices (LVADs). Demonstrates the different services provided by OT (and their relationship to each other) that assist patients with LVADs affect successful life change after implantation.  ...

... Welcome to Fallen Crest: An Interconnected Collection of Short Stories on Children of Divorce By Jessica Tillman An Honors Project submitted to the University of Indianapolis Strain Honors College in partial fulfillment of the requirements for a Baccalaureate degree with distinction. Written under the direction of Professor Kevin McKelvey. April 16, 2016 Approved by: _______________________________________________________________________ Professor Kevin McKelvey, Faculty Advisor _______________________________________________________________________ Dr. James B. Williams, Interim Executive Director, Strain Honors College ________ _______________________________________________________________ First Reader _______________________________________________________________________ Second Reader J. Tillman 1 Abstract Welcome to Fallen Crest is an interconnected collection of short stories that follows three children, siblings Charlotte Charly and twins Robert and Louis Louie Stephens over the course of eight years as they grow up with divorced parents, Amanda and Edward Ed. Each child reacts differently to each situation they come across, whether it be new relationships for their parents (Ed gets back together with his college girlfriend Tasha), or the complications of growing up (Robert and Louie growing apart as they get older despite the fact that they were extremely close as kids). The goal of this collection is to provide more literature for young adults experiencing divorce situations and to let them know that they are not alone in their experiences with divorced parents. There is always comfort in knowing that someone is not alone, even if they feel so, like many children can feel after a divorce. This collection is also for parents to try and understand what their child might be thinking while going through these experiences as they themselves go through their own difficulties of raising children on their own. J. Tillman 2 Acknowledgements Dedicated to my mother Julie and brother Spencer, who experienced these events first hand and never backed down from a challenge Special thanks to Zachary Lee and Dani McCormick for reading every single draft of these stories, answering all of my questions at any time during the day, and being a source of comfort through the stress and chaos that was this project. Another special thanks goes out to my advisor Professor Kevin McKelvey for helping me with my undergraduate career of writing and editing, giving me the courage to write about my own relationship with my father, as well as pushing me to do this project to expand my knowledge as a writer. I am forever in your debt. Finally, to Francesca Zappia and Professor Kitty Flowers. My introduction to creative writing here at the university would not have been the same without you two. May your writings and teachings continue on to inspire more students to write. J. Tillman 3 Table of Contents Abstract1 Acknowledgement...2 Table of Contents.3 Statement of Purpose.......4 Introduction..5 Procedure.6 Analysis/Conclusion..12 Reflection...14 References..15 Appendices.16 A Product Produced....16 Welcome to Fallen Crest16 Water Hazard.....41 Scars...57 Cash for a Wedding...73 Text Messaging..84 B Story Development........103 Welcome to Fallen Crest Outline.....103 Character Age Sheet128 Character development sheets..129 C Annotated Bibliography.159 J. Tillman 4 Statement of Purpose In this project, I composed a collection of short stories centered around the conflicts that children of divorce can experience. The main character, Charly, spends eight years growing up as the eldest of three with divorced parents,taking on the roles of both child and parent for her younger twin brothers Robert and Louie. One of these short stories had originally been written for the English Capstone project with the help of Dr. Robisch and Professor McKelvey, but has been heavily edited over the course of this project. The other four stories were written specifically for this project. While this collection means a lot to me, in part for being a larger collection of stories and because I am a child of divorce, it posed the challenge of separating myself and my own experiences from Charlys. I wanted readers experience first hand what children of divorce can experience in reality. Through Charly and her twin brothers, I have been able to create unique characters who portray real children growing up in various divorce situations. I have read authors who have written series of interconnected short stories to help develop my skills at connecting stories together while also having each story stand on its own instead of being read all at once like a novel. Some examples of authors I read were Sherwood Anderson, Julie Autumn List, Claire Vaye Watkins, and Flannery OConnor. I also read Janet Burroway to learn and understand more about the craft of creative writing. J. Tillman 5 Introduction Writing has always been a part of who I am as a person. I have constantly found myself reading books and writing stories that surprised even me. My writing seemed different from many published authors because it is brutal and honest about divorce situations and how it can be both good and bad for the children and the parents. Expanded families are almost never written about, and even if they are, they are only mentioned as a problem point for the main character to push on with their own story, whether it be getting the boy of their dreams to take them to prom or falling into another world where the main character has to save the countryside from tyranny, instead of being a fully developed character the protagonist can interact with. I wanted this collection to contribute to the small and almost nonexistent section of literature about divorce families and to have an impact on the people who read the collection to understand more about these situations and what goes on for both parties involved as well as those who are thrown into the mix years later, such as stepfamily and halfsiblings. J. Tillman 6 Procedure While writing this collection of short stories, I kept in mind a few topics I wanted to focus on and develop over the course of this project.. One of these topics was the overall creative writing experience of this project. These were fictional stories and I wanted to remove myself as the main character going through these events myself and become the narrator. I also wanted to write in a different genre then I was comfortable in to expand my knowledge of how to write and what differences there were between genres. Another topic I kept in mind was the craft that goes into writing stories to help develop varied sentences and story structures to keep readers engaged from the beginning to the end of each story and the collection as a whole. The final topic was the focus on the children of divorce and having the characters become real and accurate representations of what other children experience. The children had stories to tell and I told them as best I could without my personal bias getting in the way. The first challenge I faced with this project was whether to write these characters into a novel or a collection of short stories as each posed their own unique difficulties. Professor McKelvey, my advisor, and I decided on a short story collection for various reasons. One aspect of short stories that I have struggled with my whole writing career is creating a definite ending without extra information added or unnecessary details remaining in the stories themselves that could question a potential ending. Each story needs to have a definitive beginning, middle, and end with each word chosen carefully to make the most impact. Janet Burroway states, [Short stories] can deal with only one or a very few consciousnessesIt can afford no digression that does not directly affect the J. Tillman 7 action (52). I needed to learn how to end each story and use words wisely, thus choosing a collection of interconnected short stories instead of writing a novel, which would allow for me to expand beyond the story itself and leave in those unnecessary details that would take away from the story instead of helping it. Another reason for choosing short stories over an entire novel is because multiple viewpoints and perspectives can be used to show how other characters feel in a particular situation or how the characters look from a removed point of view, instead of an upclose bias the character has about themselves. With a novel, it follows one character over time and can change how characters look or come across from a limited viewpoint that might not give the whole picture like an interconnected collection of short stories with different perspectives can accomplish. This limits the author to a single, consistent perspective while short stories can break up the singularity and allow the author to write the same story from many different angles to provide the readers with a more complete picture of the situation. Writing is an activity that many people find themselves doing, either on the side as a hobby if it isnt a full time job. However, there are several thoughts and ideas that go into writing beyond putting down words on a page and hoping they make something worth reading. Natalie Goldberg writes in her craft book Writing Down the Bones : This is the practice school of writing. Like running, the more you do it, the better you get at it. Some days you dont want to run and you resist every step of the three miles, but you dont wait around for inspiration and deep desire to runThats how writing is too. Once youre deep into it, you wonder what took J. Tillman 8 you so long to finally settle down at the desk. Through practice, you actually do get better. You learn to trust yourself more and not give in to your voice that wants to avoid writing (11). Though I had trouble being motivated for this project some days, because the subject was a rough one for me to get through, I wrote every day without sudden inspiration for a character or situation. Goldbergs model sets an important structure that helped me considerably in developing my writing as well as sticking to guidelines and getting things done on a regular pace that I have never been able to do at a consistent rate. I wrote and edited the five stories in the collection in three months, and with a short timeframe, using this model kept me on track to meet the deadline with a completed project instead of pieces of a single story had I waited for inspiration to help write these stories. Connecting stories became increasingly difficult the further I got into the writing process. One thing I kept in mind was that each story had its own story plot along with the whole collections story arch. Susan Mann stated that the protagonist will start at a child's level of understand of the particular situation before developing into a kind of adult by the end of each story (9). Since I began to write in high school as well as in college at the University of Indianapolis, I have always been taught that the protagonist should go through a change over the course of the story not only to show character development but also to show growth. Characters must be challenged in various ways, not only in a single short story with a distinct beginning, middle, and end, but also over J. Tillman 9 the course of the whole collection to see how the characters change from the very beginning to the last moment before the collection ends. Not only is connecting these stories together important, but the characters must be precise. It is said that authors should know their characters better than their best friends by getting into the characters minds and understanding what their motives, inspirations, and demands are. Stephen King mentioned this in his memoir, On Writing : I never got to like Carrie White and I never trusted Sue Snells motives for sending her boyfriend to prom with her, but I did have something thereThe most important [part of understanding Carrie] is that the writers original perception of the charactermay be as erroneous as the readers. Running a close second was the realization that stopping a piece of work just because its hard, either emotionally or imaginatively, is a bad idea. Sometimes you have to go on when you dont feel like it, and sometimes youre doing good work when it feels like all youre managing is to shovel shit from a sitting position (77). Characterization was difficult for me because each character had a real life counterpart that they were based on. While creating these characters, certain aspects of those real people came out, helping me to understand how the characters worked together and acted when they were alone or had company. I used the idea Stephen King mentioned above and based characters on my family and extended family, to create the best environment for this particular collection of short stories and give them a authenticity to the situation as well as the emotions that the characters display throughout the stories. J. Tillman 10 Even though basing a character on myself or others can be a great starting point, it can draw on a more memoiresque style of writing I wanted to stay away from. I already wrote a creative nonfiction essay in this style that inspired this project and I needed something new to write to expand my writing abilities and interests. This became my biggest concern while writing. I returned to Janet Burroway, who commented on this particular dilemma in her book Writing Fiction: A Guide to Narrative Craft : If the character is based on you or someone you know, drastically alter the model in some external way: Change blond to dark or thin to thick imagine the character as the opposite gender or radically alter the setting in which the character must act. Part of the trouble with writing directly from experience is that you know too much about itwhat they did, how you felt (143). Though this is a practice I dont use in my writing, I used my own knowledge about divorce situations with my characters to make it more realistic instead of sounding like a collection of stories that tried to be accurate but lacked a certain understanding of divorce situations and how they can affect people. This seemed to be the biggest problem I found when reading novels with divorce mentioned as a situation for the main characters. There needed to be meaning behind the stories and changing the characters from their real life counterparts to fictional fleshed out characters would create a fictional story over a memoir. The biggest concept I kept in mind for this collection of stories was the theme. Themeis not imposed on the story but evoked from within itinitially from intuitive by finally an intellectual act on the part of the writer (Burroway 26). This is from an J. Tillman 11 excerpt from John Gardner in his book The Art of Fiction: Notes on Craft for Young Writers republished in Janet Burroways Writing Fiction: A Guide to Narrative Craft . This is a key elements that writers keep in mind about writing overall, and particularly in my own collection. Since divorce was a heavy subject that was also the main focus of the stories, actions and reactions from characters needed to make logical sense over a long period of time eight years. Because of this, the collection is coming of age stories, adding depth to the theme and the characteristics of the stories individually as well as a whole. This pulls in the sociology and psychology books I read about children of divorce to see how they react at different ages and have my characters do something similar to add to the credibility of the characters and the situations I created. It was important to see what traits most children of divorce had in common at different ages to make the characters relatable in their actions and emotions. J. Tillman 12 Analysis and Conclusion For this project, the main goal was to create a collection of stories that show that children are not alone in their strange and sometimes scary experiences when it comes to divorce. Everyone goes through a different event, but this collection shows how dramatic things can be and any situation that the main character Charly and her brothers go through they can overcome. It may sound optimistic, but it is better to be optimistic than pessimistic. If children focus on the depressing events they experience, a small hope they may have, such as making a new friend or waking up in the morning, will not be acknowledged. It is these little events that help to make a day better and this collection shows that in the best way possible. Since Young Adult literature is a large section in the publishing industry based on bookstore and library sections, it seems to be a lack of insight from the publishing industry to not include more stories for children about divorce. The absence of a strong body of literature about children of divorce indicates a lack of attention to the needs of such children. Having gone through my own experiences, having to help myself and being alone made life more difficult without literature to help me know that I was not experiencing divorce on my own. Because of this learned skill of needing to be able to do things by myself, it became difficult for me to accept help from others. But young adults do not have to go through these experiences alone anymore. There are others who know what it feels like to be alone and they should not have to feel that way. These stories fill the lack of divorce literature in the young adult genre. J. Tillman 13 Even though there are five stories in this particular collection, many characters were left out in favor of focusing on the characters established in the collection. For the continuation of the story of Charly and her twin brothers, more stories will be written to fill in the various holes in the timeline that were skipped over in order to focus on the most important stories in the collection. J. Tillman 14 Reflection This collection of stories was difficult to write and edit. Since the stories were about children of divorce, I wanted to understand the emotion that the characters would have at each stage of their lives, I needed to remember my own experiences and that brought up some memories and emotions I had not experienced for a while. Because of this, it became harder every day to write these stories, even harder to edit them and add in scenes. Then it posed the question of how I had handled my own parents divorce. My coping mechanism had been to ignore what the situation had been at the time, throw a fit, and walk away. I could not do that with this project. I actively sought out help through the Counseling Center and became confident with my past experiences and how they have affected me and still affect me today. Because of this project and my experiences with the Counseling Center, I came to terms with my situation. I became motivated to make this collection. I had to go through my experiences alone, but I did not need to anymore and neither did the children I wrote for. Almost half of all marriages end in divorce in the United States, my therapist told me. So one out of two children have gone through something similar. It may be difficult to understand how someone can feel alone when divorce is a common occurrence in the twentyfirst century, but feeling alone is a common way children express themselves after a divorce. With this collection, I hope to show children that they are not by themselves and that there are other children experiencing the same situations and can find comfort in that knowledge. J. Tillman 15 References Burroway, Janet, Elizabeth StuckeyFrench, and Ned StuckeyFrench. Writing Fiction: A Guide to Narrative Craft . Boston: Longman, 2011. Print. Gardner, John (1992.) Excerpt from The Art of Fiction: Notes on Craft for Young rd Writers . In Janet Burroway, Writing Fiction: A Guide to Narrative Writing, 3 ed. HarperCollins Publishers: New York, 1992, Print. Goldberg, Natalie. Writing Down the Bones: Freeing the Writer Within . Shambhala Publications, Inc.,: Boston, 1986. Print King, Stephen. On Writing: A Memoir of the Craft . Scribner: New York, 2000. Print J. Tillman 16 Appendix A: Product Produced Welcome to Fallen Crest Feet thundered down the hallway and Charlys door slammed open. Merry Christmas! the twins shouted, jumping on her bed and shaking her awake. Santa came, Charly! Robert said as Louie giggled before they both shot out of the room, through the kitchen and to the living room. Charly rubbed her eyes and sat up, looking around her still new room. It was still strange to wake up to purple walls instead of sparkling pink. Charly crawled out from under the covers, made her bed, put on her crooked glasses (which could never stay fixed with two very excited sevenyearold twins) and grabbed a package wrapped in scraps of wrapping paper and newspaper comics before heading out to the living room to join the twins. Mom sat on the couch, Robert and Louie bouncing around like they had to pee. Charly, Mom said. Would you like to do the honors of playing Santa this morning? Well, dont we usually watch a movie and eat breakfast first? Charly asked. Usually, but we dont have a DVD player since we moved. Well, Charly held the package in front of her, Santa presents her first gift. Charly handed the package to Mom. Mom gave her a quizzical look before gently peeling the wrapping off. J. Tillman 17 Rip it! Louie shouted, laughing when Mom tore at the paper and threw it on him. Once the commotion of the paper fight calmed down, a small DVD player sat in Moms lap. She smiled down at the small piece of hardware and held it gently in her hands. Charly, you didnt have to do that, honey. Santa decided that you needed a gift as well. So now we can watch our movies again. Charly beamed and Mom pulled her close. Thank you, she whispered in Charlys ear. Merry Christmas, Charly whispered back, before joining the boys on the ground. Well, since weve got our new DVD player, lets boot it up and pick out a movie for this morning. Mom stood and connected the player to the TV while the kids fought over which movie to watch. Charly wanted How the Grinch Stole Christmas , the live action one because it always made her laugh. Robert had always been a fan of Rudolph the RedNosed Reindeer and Louie was content to continue watching the fire crackle on the TV from the local news station if it meant they got to open presents earlier. Mom said that wouldnt work because it was Christmas Movie Morning, then she threw out the option of Little Women (What does that have to do with Christmas? Louie asked, crossing his arms tightly across his chest). The family finally decided on A Christmas Story , shouting Youll shoot your eye out! at each other while the movie loaded. Just before Mom was going to push play, the doorbell rang. J. Tillman 18 Ill get it, Charly said, standing up and heading towards the door, but the twins barreled past their older sister of three years and flung open the door, Louie shouting, Dad! before running out the front door, Robert close behind. Dad stood outside the door with a few packages at his feet as he picked up Louie. Hey there kiddo, he said. Having a good Christmas morning? Oh yeah. Were about to watch A Christmas Story . Come and watch it with us, Louie said. Oh alright. Guess you roped me into it, Dad said jokingly, setting Louie down and grabbing the packages at his feet. Mom didnt look too thrilled to have Dad in the house, but she smiled and opened the door wider. Merry Christmas, Mom said, receiving a nod from Dad as he knocked snow off his shoes and walked to the living room. The twins sat with Dad on the couch and Mom and Charly pulled in chairs from the kitchen, letting the movie start. Charly looked between Mom and Dad. The last time they had been in this house at the same time hadnt been a good day. The kids had returned from their fall break with Dads sister, Aunt Faye, in Kentucky, but they had pulled up to this new house instead of the one that they lived in. The trip seemed to be one of the last happy moments that the three of them had. *** Mom stood outside a new house with a big smile on her face, while Dad stood further away, arms crossed, and smiling slightly at the car. Aunt Faye parked the car and helped the boys out of their car seats while Charly pulled the bags from the trunk. J. Tillman 19 Hey there, kiddo, Dad said, giving Louie and Robert hugs and waved at Charly as she struggled with the three bags. Mom came over to help her. How was break? Dad asked the twins. It was awesome! We got to go on a bunch of roller coasters. Louie got sick! Robert said. Did not! I just didnt feel good, Louie said, giving Robert a small shove. The twins chatted Dads ear off about all the different places they had gone while Mom and Charly walked inside the unknown house and placed the bags on the floor. Mom? Charly asked. Mom wouldnt meet her eyes. Where are we? Were home, Mom mumbled too softly that Charly had to ask her a second time. Mom was trying to keep her tears in, but Charly saw them and knew something was about to happen. Robert and Louie ran around the house to the sounds of laughter, ignorant and blissful. Dad and Aunt Faye stood off to the side in the living room, talking in whispered voices. Charly tried her best to ignore them and focus on the boys, but it was hard when she knew that this was not the familys house, but Moms. Kids! Come say goodbye to your aunt. Shes heading back home, Dad said. Bye, Aunt Faye! the twins said in unison, each giving her a quick hug before running around the house a second time, flying up the stairs this time to explore the upper level. Thank you, Charly said, giving her aunt a hug that seemed to last a little longer than it should have. Aunt Faye bent down and looked Charly in the eyes. J. Tillman 20 Youre my favorite niece, and I cant believe that you put up with your annoying brothers so well. Aunt Faye got Charly to laugh and stood up. Just remember, you can always come visit me any time you would like. Thank you, Charly said again and watched Aunt Faye walk out the front door, Dad closing it behind her. He then guided Charly into the living before going around to various rooms in the house to catch the boys and have them sit on the floor in the living room with Charly. Mom? Robert asked once everyone had sat down. Where are we? Well, bud, youre in a new home, Dad started to explain before folding his hands together and staring at his feet. Mom and Dad are going to be living in different houses from now on, Mom continued when Dad didnt. Why? Louie asked. Why cant we just stay in one house? I like it there. Mom and Dad are getting a divorce, Dad said, still not looking at anyone, but finally speaking again and breaking the silence that had fallen on them. This made Charly close her eyes and do her best to not cry too much in front of her brothers. What does that mean? Robert asked tentatively, looking over at Charly, his protector, only to see her upset and crying. He crawled over to her and snuggled into her lap, having always been extremely close with her. When Robert would cry as a baby, Charly would pull him into her lap and calm him down. Now Charly was upset and it seemed to her that this was Roberts attempt to calm her down like she always did for him. When Robert was nestled in her lap, Charlys tears came more steadily into the back J. Tillman 21 of Roberts shirt, grateful for some comfort and normalcy, but she still refused to talk, even with Robert silently nagging her to speak anything. Mom, why is Charly crying? Louis asked, confused by his sisters reaction to the news. Well, when Mom and Dad get a divorce, Mom explained, It means that they are no longer going to live together because they no longer love each other. That doesnt mean that we dont love you, but Mom and Dad dont want to live with each other anymore. Is it something we did because we can change? Then we can stay together, Louie said as Robert nodded vigorously. Louie and I can clean our room willingly and we wont fight as much as we normally do, all three of us. This made Mom cry through her smile. Sweetheart, it has nothing to do with you three. This is between Mom and Dad. Will we live here? Louie asked, looking around the small barren house their aunt had dropped them off at only a few minutes earlier. Yes, Mom said hesitantly, looking over at Dad, who had stopped talking again. This is my house now. Youll be living here with me most of the time. Will we ever see Dad? Louie tapped his fathers knee as Robert leaned into Charly more as he tears stopped but the shakes of anger began. J. Tillman 22 Of course, honey. You will see both of us all the time. We will be moving some of your things into this house and some of your things will stay at Dads. The next goal to decide is what goes where and we will leave it up to you three to decide. Sound good? Charly shook while she held onto Robert. Why were her parents doing this to her, to the twins? She knew people at school whose parents were divorced, but they were usually kids who were a bit on the weirder side, or those who bullied other kids. Charly was a normal kid, and she liked it that way. Mom and Dad now made things not normal and that wasnt how things were supposed to be. What was going to happen to her now? What was she supposed to do to be normal? Everyone at school would probably make fun of her and she wouldnt have anyone to turn to except the teachers, and even then, she didnt want to be known as the teachers pet. That is how kids alienate themselves from their friends. She needed a friend who understood what was going on, but she didnt know anyone who was going through this, making her the weirdo and no one would understand or would know anything. Her parents were ruining her life and she was only ten years old. How was she supposed to handle the rest of her life? Come on, lets go. Dad stood up and walked to the front door. Before the rest of them could gather their thoughts or even begin to move towards the front door, Dad sat in his car and drove off to their old house. Mom sighed, helped the kids into their car seats in her car, and drove back to the house that used to belong to the entire family. That night, while everyone else slept, Charly stayed up late writing letters to her teachers, whom she loved at Fall Creek Intermediate, about the situation that was going on with her family and how things were changing for the worse for her. She had actually gotten a J. Tillman 23 few responses from her teachers, especially Miss Martin, who taught English, and Mrs. Kaiser, who taught math, who wanted to help her out with school as well as being friends with her, since she didnt have any. *** Charly smiled, remembering where she had put the letters from her teachers as Ralphie almost shot his eye out with his Red Ryder BB gun on Christmas morning, ruining his glasses. The twins laughed, but no one had really spoken throughout the movie, just mocked the tagline and laugh at everything Ralphie and Randy got themselves into. The movie ended shortly after and Dad bypassed breakfast to hand the twins their gifts and tossing Charly hers, even though Mom was already cooking in the kitchen. Santa decided to stop by my house as well, so these are from Santa, he said. I thought Charly was playing Santa, Robert said, but no one paid attention to him. Louie tore open his box. Thanks Dad! Louie said, holding a brand new portable CD player in his lap while Charly and Robert ripped theirs open. All three of them got the same thing. Thanks Dad, Robert said. Louie gave Dad a hug. Dont thank me, Santa knows what you like, Dad said, hugging the twins back. Now you can take music anywhere with you. Yay! the twins cried in unison, eying the presents under the Christmas tree. But we dont have any CDs, Charly said. Dad didnt seem to hear. Mom came back into the living room and tossed Charly the Santa hat. J. Tillman 24 Charly, would you play Santa this morning? she asked. Charly beamed, tossed the CD player to the side, and crawled towards the tree, followed closely by the twins. Charly moved slowly, just to make the twins upset. Hurry up Charly, or I will steal your hat, Louie said, making a grab for the hat, but Robert tackled him. Dont take the hat. If you do, she wont give us anything else from Santa and it will have to be wrapped under the tree until next Christmas. Dont do it, Robert said, his brows furrowed in concern. I was only joking. Louie pushed Robert off of him and they both sat against the couch Mom had turned on the fireplace from the local news station again. Charly handed out a small number of presents to the twins and herself. The sound of ripping paper filled the room. Wow! Charly, look Robert said, bouncing off the couch and sitting next to Charly, who was in the process of opening a large box that sat between her legs. I got Pokmon Sapphire and Louie got Ruby. We got the newest Pokmon game! Charly noticed a used sticker on the back of the cartridge, but smiled at Roberts excitement. Thats super cool. Robert! Louie shouted from the couch. Charly and Robert looked over to see Louie holding up a cord with a huge grin on his face. A connector cable! Robert shouted, running back to Louie and they both held the cord carefully. We can trade and battle now! J. Tillman 25 Both boys stared at each other in shock, mouths gaping open before hugging Mom. Thank you, they chimed in unison. Why are you thanking me? They came from Santa, Mom said as she hugged the twins back. You talk to him, so you can tell him thank you for us, Louie said. For both these and the CD players, Robert added. Of course I will. Now lets see what Charly got from Santa. What did you get Charly? Louie asked as Robert came and sat next to her. I dont know yet, I havent opened it yet, Charly said. Can I help? Robert asked, reaching out for the red and white wrapped package still between Charlys legs. Mom cleared her throat and Robert froze, Louie giggling as he returned to the couch to sit with Dad. Did Charly say you could help? Mom asked Robert. No, Robert mumbled and bowed his head. Okay. This is Charlys present from Santa, so she should be allowed to open it. Yes, Mom. Robert sulked over to corner by the TV where the pile of blankets sat folded where he flopped face first into it, hiding his hiccups of embarrassment. Charly rolled her eyes at her brothers dramatic overreaction and ripped off the wrapping paper to throw it at him. Get up Silly Butt and quit pouting. Its Christmas, she said. J. Tillman 26 Robert smiled and threw the paper back, coming to sit by Charlys side again. Underneath the wrapping paper was a large shipping box. What do you think is inside? Louie asked from the couch. I dont know, but Santa is full of surprises, Mom said with a smile on her face. Once Charly got through the tape, she found five books inside, grabbing the smallest one to find a boy flying across the cover on a broomstick. Residue of a sale sticker still stuck in the upper righthand corner. Its a really popular series out right now and Santa thought that you would enjoy it to pass the time. Charly didnt say anything, but got up and hugged Mom. Thank you, she whispered. Your welcome sweetie, Mom said. Charly had given up on Santa a few years ago. Mom and Dad didnt know, but Charly had found her Christmas gift from Santa tucked under the back seat of the truck and knew that this jolly old man was just a fantasy, even though she wanted to believe in him wholeheartedly minus the whole watching her year round part. That was just plain creepy. She kept up the belief for the twins. She loved seeing the smiles on her brothers faces, especially after the rough year they had all had, when all of them were scared of the world. Besides, Mom was the best when it came to presents and surprises. Even when they had just moved into this house, Mom pulled out all the stops. *** J. Tillman 27 Welcome home! Mom said, opening the door to their new house. Sure, Charly and the twins had been moving things from Dads to here for the past two months, but everything had been painted, unpacked, and put away. Wow! Robert said as Louies mouth fell open. The house had a lime green front room that led to a burgundy red dining room, the same as in Dads house now, before he decided to paint it white again, wiping away Moms design from the house. To Charly, the house felt cozier than it did at the Dads house, even when they were all a family in the same house. Just the four of them felt better. She smiled and hugged Mom. Charly? Mom asked, wrapping her arms around her eldest child, who had taken the divorce hard. Are you okay? Im happy, Charly mumbled into her mothers shoulder, squeezing Mom tighter. Im happy that youre happy. Mom let go of Charly and wiped a stray tear away. They both giggled before Mom pulled the boys back over. Now, I know that Christmas isnt until next week, but Ive been talking with Santa and we both decided that you three have been extra good this year and each of you have a small gift. Really? Robert asked, his eyes glowing as his voice reached a dolphin level of hearing. Really, Mom said. But I told him no. J. Tillman 28 No! Mom why? Louie interrupted and then burst into tears as Robert threw himself as Moms feet, repeating what Louie had said. Charly and Mom laughed, trying to calm screaming twin boys. You didnt let me finish, Mom protested, wiping tears from Louies face. Robert had abandoned Mom and now cowered behind Charly, his protector. As I was saying, Santa wanted me to just give you gifts because you are so good. But I know all three of you are super smart, so I told Santa, No. Im going to hide them around the house and have my superduper smart kids find their gifts around the new house. Of course Santa agreed, saying he had never seen smarter kids. So we still get a present early? Robert asked, peeking out from behind Charly, still clinging to her arm. Yes, of course, Mom laughed. Santa wouldnt tell me that and then I wouldnt let you go find your gifts around the house. Plus, you get to explore the house and find your rooms. The twins glanced at each other, then up at Charly, who looked back at them, before the three of them took off running through the house. No fighting! Mom shouted as door slammings shuddered the house. Robert and Louie shouted at each other as they shut doors in the others face. Charly did her best to stay out of the way, but Louie slammed a door in her face, laughing deviously. Three seconds later, the door opened and Louie came barreling out and down the hall. J. Tillman 29 Eww, its Charlys room. Its all purple, he said before he slammed the bathroom door shut, shouting that he had to pee. Louie! Robert opened the closet door he had been hiding behind, holding his nose. You dont have to tell everyone. The bathroom door opened and Louie grinned. All done. Hands, Mister, Charly said, snapping her fingers at him to get his attention. I did, Louie said. Do I need to smell them or should I just tell Mom? Charly laughed when Louie hid his hands behind his back. No. Go wash your hands then. Robert laughed as Louie stomped back into the bathroom. Get out of the closet, Robert. Your present isnt in there. Charly saw a blur dash out of the closet from the corner of her eye as she entered the room Louie had shouted was hers. Lavender walls and a silky purple bedcover greeted her inside the door. Clearly her room. It seemed to be the same size as the one at Dads, but this one was on the first floor and had no windows. A mini Christmas tree twinkled on her long dresser that had a plate of homemade oatmeal raisin cookies on it, her favorite cookie that Mom made especially for her. Charly grabbed a cookie before exploring the room further. Under the bed was a storage bin of her summer clothes next to a small new suitcase, most likely for travelling between the houses, Charly decided she hadnt left any clothes at Dads because she didnt have that many to start with. Next to the longest J. Tillman 30 wall by her bed stood the desk with its own lamp and a fiveshelf bookshelf, sparsely filled with books. She hadnt been a big reader, but it did keep her preoccupied for a while. The closet had coats, jackets, and dresses hung inside other boxes held shoes, toys, and other random things Charly liked to collect. Everything was put away and organized, just the way she liked it. Charly? Mom asked, opening the door slightly to peek her head in. How do you like your room? I love it. Thank you. Charly said, smiling at Mom. Charly! Robert squeezed past Mom, holding something in his hand, with Louie shortly behind him with a small blue bowl in his hands. Look, Charly. I got homemade Rice Krispy treats. Louie got JellO filled with whipped cream, just like Gramma makes. Louie shoveled a spoonful of JellO into his mouth, smacking his lips loudly as he pulled the spoon out and put it back into the bowl. All four of them laughed as a normal family. Now here they sat, separated again by the presence of a new person, Dad. Oh, I almost forgot. Dad pulled out an envelope from his shirt pocket. Aunt Faye sent me pictures of your trip down there for fall break. Dad handed the envelope to Charly, opening it to see the front picture of her and the twins standing in front of the newly built white entrance pathway of Churchill Downs. All of them wore jackets because of the intense wind that day. *** J. Tillman 31 Charly, Robert, Louie. Are you guys packed and ready to go? Aunt Faye is here, Mom called from down stairs. Charly was packing a few more things into her bag that she most likely wouldnt need but it wasnt bad to be over prepared when she heard Robert and Louie bound down the stairs, their energy filling the whole house with laughter. Charly? Coming, Mom! Charly shouted, heaving her bag onto her shoulder and shutting the bedroom door behind her. Look out below! Charly said as she tossed her bag down the stairs, bowling for twins. Robert jumped out of the way, but Louie got knocked down at Moms feet. Score! Charly skipped down the stairs and landed solidly in front of Mom. Charlotte, Mom said, placing her hands on her hips. What have I told you about bowling for the twins? She bent down and helped Louie to his feet. I know Im not supposed to, but its fun. No its not. Louie threw his bag at Charly, who side stepped and watched it hit Robert in the chest. Ow. Come on! Robert almost launched himself at Louie but Mom stepped in and tossed the bags out onto the front porch. Thats enough. Aunt Faye is in her car, ready to go. She is super excited for all of you to come visit her over fall break. I want you to behave though. Dont come back werewolves or anything. J. Tillman 32 Promise! Louie and Robert said and headed outside where Dad was transferring car seats into the back of his sisters car. Charly? Mom asked her when Charly didnt say anything. Promise? No guarantees, but I will try my best. Thats my girl. Mom started outside, but Charly still stood in the doorway, looking at the twins and remembering that her parents mail had been coming for them separately instead of together like it usually did. Is something going on between you and Dad? she asked. A pressure was released from her chest because she had wanted to ask Mom that for a while. Sweetheart, dont worry about Dad and me. We are big kids and can handle ourselves, okay? Mom said. Charly nodded her head and smiled, heading outside to hop in Aunt Fayes car. She knew something was wrong, but she didnt want to upset Mom with all of her questions. Mom helped Aunt Faye load up the bags in the trunk and made sure the kids had gone to the bathroom and had decent snacks and sufficiently charged Gameboys for the twohour drive south to Louisville. Then the four of them headed off, waving out the window to their parents as they headed off for this incredible adventure. Robert and Louie seemed impossible to control that day. It was right in the middle of break and this days activity had been picked by Charly horses. While they thought that it wasnt that entertaining at first, it soon became a competition between the kids to bet on the horses that would win. J. Tillman 33 Now, you cant place the money yourself, but I will give each of you twenty dollars to bet with on the horses today. Whether you bet it all and win some or dont win anything, today is supposed to be fun, Aunt Faye said, holding three twenty dollar bills up and putting them back in her purse. Now, theres only one or two races an hour, with a total of ten races today. Each race has about twelve horses racing and we can see them and decide who we think the winner will be. Then I will head to the betting station and put your money on the horse. After that, its a return to our seats to watch the race. Let me know if you have to go to the bathroom or if youre hungry. And please, she stressed to the twins, stay close to me and dont leave your sisters side. We have gone to the amusement park and the aquarium the past two days, this is what she wanted to do today, so be on you best behavior. Yes, Aunt Faye, Robert said, taking Charlys hand. I will, Louie saluted to her. Alright, lets head inside. The whole day was spent in two different places: the newly built suites that sat above the race course, and the viewing arena where the horses got ready and everyone could place their bets on which horse would win. The twins bet on which one had the coolest name, Aunt Faye bet on the prettiest horse, but Charly got a tip from one of the employees on how to read the stat guide they were given when they first arrived. Once she learned that, Charly made knowledgeable bets and actually made a few dollars on each bet, but nothing extremely crazy. J. Tillman 34 Why does Charly keep winning? Louie whined after the fourth race, a hot dog covered in nacho cheese halfway to his mouth. Because she knows which horse is gonna win. She can speak to them from the balcony we stand on, Robert said, laughing. You never know. Us Stephens girls are really good at reading minds. Aunt Faye winked at Charly, making Charly smile. By the end of the night, Charly had made her money back, but the twins and Aunt Faye had lost their twenty dollars. To celebrate the win that Charly made, Aunt Faye took the kids out for some deep dish pizza near the racing track, one of her favorite spots. By the end of dinner, Louie was covered in marinara sauce, Robert was shoving down bread sticks, and Charly laughed at both of the boys. Too soon it was time for the three of them to head back home and go back to school. Aunt Faye sat weirdly quiet the entire ride and that put Charly on edge. The boys entertained themselves in the back seat and didnt notice that anything could be wrong with their lives, but Charly knew something was about to happen, and she didnt like the feeling of it. The feeling was made worse when they drove to a different house instead of the one they had left called home. *** Charly quickly shut the envelope, remembering that the trip was fun, but she now knew what happened next and didnt want to remember the pain she had started to let go of. Thanks. Ill write her a letter to say thanks. J. Tillman 35 There ya go, kiddo. Dad smiled at her and she sat down next to her box. Robert and Louie ran off to their rooms upstairs, shouting about Pokmon before the door slammed shut. Im gonna head to my room too, okay? Charly asked. I want to start reading these. She motioned to the box in her arms. Dont forget your CD player, Dad said. Ive got it in here. The CD player still sat on the floor. Okay. Breakfast will be ready in a little while, Mom said. Okay. Charly set the box down on the bed and was about to close the door when she heard Mom and Dad talking. Im surprised you didnt bring her along and just introduce her to the whole family at once. Would have made for a very Merry Christmas, Mom said. I dont know who youre talking about, Dad said. Oh horse shit, Ed. Dont play dumb with me. You know who Im talking about. She showed up at the goddamn park when we were still married. Its not like you couldnt tell you both were more than just friends. *** All of them used to go to the park all the time. Only at the end of summer break did Charly notice anything different. Higher Mommy, higher! Robert shouted on the swings, kicking his legs wildly. Louie decided to climb on the outside of the covered slide when he had been strictly told J. Tillman 36 not to, and Charly hung from the monkey bars by her legs, hitting her chest like a Gorilla to make the twins laugh. She turned to find Dad, but he no longer stood under the slide, watching to make sure Louie wasnt going to fall. Charly quickly flipped out of the monkey bars and went to stand under Louie, hoping he wouldnt fall and crush her skinny, boney frame. Once underneath the slide, Charly heard Dads voice. On the other side of the bridge connected to the slide Louie was climbing, Dad was on his phone, and the other person was making him turn pink and giggle like Mom used to when Dad would tickle her neck with his stubbly beard before he shaved it off. He didnt do that anymore. Yeah, come on over. Im by the bridge on the playground facing the soccer field. Yeah Ill look for you. See you soon. Love you too. Bye. Dad snapped his cell phone shut and noticed Charly looking at him. Whats up, kiddo? he asked. Who were you talking to on the phone? Charly asked. An old friend is in town and she wanted to see if she could visit, Dad replied. So, shes coming here? Yeah. Actually, I think she is coming this way. Dad pointed to the red minivan that pulled up in front of the welcome center a little way from them. Now, shes a little shy, so Im gonna ask you to stay here with your mom and brothers while she and I catch up, okay? Yes, Dad. Charly looked down at her feet and kicked at a few pieces of mulch as Dad walked over to the woman and gave her a hug and a kiss. Charly stood dumb J. Tillman 37 founded at the pair of them Dad didnt kiss anyone besides Mom. The pair sat down near the welcome center and talked. The other woman talked excitedly with her hands while Dad laughed and put his arm around her shoulders, something else he only did with Mom. Louies sneakers squeaked on the outside of the slide he was currently climbing. Charly stepped back to see he had lost a shoe. Come on Louie, get down, Charly said. No! Louie pouted, pulling himself up a little further. Mom said I could be up here if Dad watched, right, Dad? Charly paused before she spoke. Dads not over here. Hes talking to some lady by the main building. What? Louie tried to lift himself up to see where Dad went, but he slid down another foot, his butt in Charlys face. She scoffed and pulled him down onto the inside end of the slide while she went to find the missing shoe. Charly came back shortly, picking mulch out of the shoe and handing it to Louie to put on. I dont know how to tie my shoes. Louie complained. Youre almost in second grade. Yes you do. Now put on your shoes. Louie pouted but listened, slipping on his shoe before standing up and walking over to the swings where Mom swung next to Robert. Charly, swing with us! Robert shouted. Louie ran forward ahead of Charly and snagged the swing next to his twin. Charly shrugged and sat next to Mom, but didnt swing much. Her mind was preoccupied by Dad and the other woman. J. Tillman 38 Charly, honey, whats wrong? Mom asked, coming to a stop. Dad is sitting with another woman by the main building, Charly said reluctantly. Who is she? Mom asked, standing up to get a view of Dad and the other woman from across the playground. He says shes an old friend from college who happened to be in town. But Mom, Charly confessed, looking down at her feet. He said that he loved her. Mom froze, staring at the pair of them. Her face dropped and the smile disappeared from her normally cheery face. Oh, she said, hanging her head and sitting back down in the swing, staring at her feet. Charly knew then that something was wrong, and she was terrified that she had said the wrong thing, but kept that to herself she didnt need to worry her mother anymore than she already had. *** I wasnt planning on bringing Tasha to your house, Amanda, Dad said this Christmas morning. Wouldnt put it past you, Mom mumbled. Besides, shes spending Christmas with her own family. Oh, so youre ruining two families instead of one. Glad Im not the only one. Hold on a sec for fucks sake, Dad raised his hand and pointed at Mom, who wielded a wooden spoon sizzling with sausage grease. Youre the one who wanted the divorce. Dont make me out to be the bad guy. J. Tillman 39 Oh, so am I the bad guy? Mom scoffed. Youre the one who was fucking another younger, skinnier woman behind my back. Marriage is a twoway street, Ed. You cant blame this all on me! But I am, because I tried my damndest to keep us together, but that doesnt matter. Im just not good enough for you and neither are your children. Dont bring them into this. Well you should have thought about that before agreeing on the divorce, because no matter how you spin it, the kids get the worst of it. They now dont have a real home. The sausage sizzled in the frying pan, filling the house with its irresistible scent. Charly could hear commotion in Louies room upstairs where the twins had been for the past ten minutes or so. I let you in my house, share my food with you, and I let you be Santa Claus along with me. These things are confusing to the kids and to me. It seems like you care about all of us again, not just the kids, Mom said. Eggs screamed to life next to the sausage. I didnt know you were gonna be Santa. Its always been me to dress up and go down stairs dressed up as him and deliver the gifts under the tree. What did you do about that? Dad argued back. I know! You didnt do anything because the suit is in my attic, getting eaten by raccoons. Charly heard the stairs creak above her the twins were planning a sneak attack. Well the suit being eaten by raccoons is your own damn fault. All Im saying is that for next year, Im gonna be Santa. I dont want to confuse the kids. J. Tillman 40 You just dont want me winning because my Santa brings better gifts than your handmedown gutter Santa. Fuck off, Ed. Why dont you go play Santa somewhere else? You arent wanted here. But Im Santa. Santa isnt real Mom stopped short as the stairs creaked more. Mom? Robert asked. Is Santa not real? Louie finished. Mom and Dad looked at each other before Dad smirked. Looks like another thing you ruined for the kids, Dad said. Mom raised the spatula at him, but quickly put it down before pointing at the door, her glare turning dark. Get out of my house, Mom growled through gritted teeth. Dads face went red and he glared back before he stormed towards the front door, knocking Robert over on his way to his car, Louie running after Dad. Charly walked down the hallway and helped Robert to his feet as Louie came back inside, tears on his cheeks. Honey, whats wrong? Mom walked over to Louie, wiping away his tears. Dad wore the Santa suit, didnt he? J. Tillman 41 Water Hazard The doorbell sounded outside my room, startling me back into reality. I peeked out the window. Great, Dads truck sat in the driveway. I forgot it was Wednesday. I bookmarked my place in the book, refusing to dogear anything, and headed to the front room where Dad stood waiting. Louie came running down the stairs and jumped into Dads arms, Robert standing back and holding my hand. Dad halfsmiled at the group before setting Louie down and heading out the door, each of us grabbing our overnight bag and following him. Be safe guys, okay? Mom called after us as we piled into the truck. Louie called shotgun, so Robert and I got the half seats with the bags. Were going puttputting at Ben N Aris! Dad said as he pulled out of the driveway. The boys cheered. I sat in silence. Putt putting could be fun, as long as the boys didnt lose their putters in the water hazards again and make me go swimming accidentally while trying to fish the poles out with the net. It would be a fun night. The quick fiveminute ride was filled with the boys chattering about how awesome they were at puttputting and how they were going to cream Dad with their master skills. They also promised me that they wouldnt make me go swimming again. As we pulled into the parking lot, I noticed an extremely tall, beanpole thin woman looking at their car with a high school boy on his phone next to her and a smaller twin version of the beanpole woman running around and collecting rocks that surrounded the puttputt course. I eyed them suspiciously, I knew that woman from somewhere, but J. Tillman 42 stopped wondering when Robert couldnt wait for Louie to get out of the car any more, so he climbed into the seat with him and opened the door before the truck had come to a complete stop. Robert, calm down there, Dad said, putting the truck in park. Louie and Robert scrambled out of the truck, not remembering that I was still in the back seat. I reached around the side of the passenger seat and pulled the lever to send the chair forward so I didnt have to climb over and around the seat to get out of the door. By the time I shut the door, the woman had come up to Dad and gave him a hug and a kiss on the cheek. I took one look at this new pair and pulled on the truck handle wanting to hide inside even though the truck smelled of farts thanks to the twins, but Dad locked it, so I couldnt escape. Dad pulled me closer by my elbow to introduce me to the others. This is my eldest and only daughter, Charly, Dad said. Charly, this is a good friend of mine, Tasha. Its nice to finally meet you, Charly, Tasha said, leaning forward and extending her hand to me. I made no move to return the handshake. Tashas smile faltered a little bit, but soon looked over at the twins. And who are these handsome gentlemen here? she asked. Im Louie, and this is my twin brother Robert. Louie stuck his hand out to shake Tashas, Robert a bit more tentative. Rob and Louie, fine names indeed. Its Robert, Robert said to his feet. Tasha ignored him. J. Tillman 43 Well, its nice to meet all of you. These are my children. This is Shaunda. Tasha pointed to the look alike. Hearing her name, Shaunda dropped the rocks she had been playing with and came to stand next to her mother, a bright smile on her face. Hi! Shaunda practically shouted. Everyone laughed except me. I stared at the girl with a curious look on my face that made Shaunda break eye contact and shuffle her feet. And this is my eldest, Ian. Tasha yanked the teenage boy closer. He didnt look up from his phone, fingers flying as they sent text messages, grunting his hello. Louie looked at Ian with pure amazement in his eyes. We stood awkwardly in the parking lot, Ian finally noticing that he was being stared down by Louie, who then looked down at his feet before we were pushed toward the entrance. The arcade itself wasnt like one of the old arcades that everyone imagines. Those ones have fighting games like Street Fighter or Mortal Kombat , racing games, lucky chance games (my favorite being Power Tower ), skee ball, and shooting games. Ben N Aries only had old broken lucky chance games. No one knew why this family owned place was still open, but they had a duck pin bowling alley down the middle of the rectangular building, five party rooms lining the wall behind the bowling alley, a concert hall for local bands that was a glorified larger party room, and putput outside with two different courses. We had to go inside to pay for the putt putt, get our putters, golf balls, and score card. Then it was back outside to start the course. It was early enough in the afternoon that it wasnt crowded, so this hodgepodge of people I was a part of had the J. Tillman 44 entire course to ourselves, which seemed like a good ideaShaunda was all over the place and Ian couldnt keep up with the group because he constantly stared at his phone. Ian! Tasha yelled at one point. He had sat down on a bench with his putter between his legs, texting and ignoring the group. Ian! Tasha called again, but gave up and let him sit. I thought that might work with Dad, that is, if only I had brought my book. Dad, can I sit over by Ian? I asked. Sure. Go make friends. I was surprised Dad has said yes that I looked at him dumbfounded before regaining my composure and sitting on the bench near Ian, watching the clouds overhead since Dad said I was too young to have a cell phone. We sat in a comfortable silence, not the awkward silences I sometimes got from Dad when he doesnt know what to say. I didnt catch your name earlier, Ian said, glancing at me. Charly, I said. Short for Charlotte. Im Ian. Ian stuck out his hand and I shook it. He shoved his phone into his pocket and nodded his head towards the rest of the gang. They seem to be getting along well. Yeah, I said, looking at Louie and Shaunda laughing at each other. Robert hung back wanting to be part of the fun, but getting pushed aside. Louie and Shaunda really like each other. Yeah. J. Tillman 45 We watched in silence while the kids play putt putt. Robert looked over at us and waved. We both waved back. I turned to look at Ian, but I heard shouting from Louie. I looked back to see Louie shove Robert a bit too hard and Robert fell over the rope barrier of the bridge and into the water hazard. Panic set in and everything slowed down. Robert fell, letting go of his putter before splashing into the water, his putter hitting his stomach before he disappeared under water. I stood but didnt movehe would be fine. But he cant swim, idiot! the voice in my head screamed. At that, I kicked off my flipflops and bolted for the water Robert was nowhere near the surface. Charly! someone shouted after me before I jumped in. Robert had always been afraid of water when he discovered he couldnt really float and was a natural sinker. As I swam further down, the pressure built. I grabbed Roberts arm and pulled him around my neck and also managed to grab the putter, which I used to push off the floor towards the surface. When Robert was above water, he gasped and coughed up water. I swam us to the edge where Tasha and Dad pulled Robert off my back and doted over him, leaving me in the water. I put the putter on the side and got ready to hop out when a hand appeared in front of me. Ian stood with his hand out for me to take. I took his hand and got out of the water, bending over to catch my breath. Thanks, I mumbled, looking over at Robert being swallowed by the other five. Dad looked around frantically until his eyes landed on me. J. Tillman 46 Charly, go get management, he said, turning back to Robert. I sighed and began to walk towards the door I was the one who could comfort, but Dad always thought he knew best. I made it halfway to the door when three employees ran past me, towels and arcade shirts in hand. I ran back and found Robert buried in shirts, Louie and Shaunda crowded close while Dad argued with the eldest employee who I recognized as the arcade owner from all the times the twins had a birthday party at the arcade. All Im asking is why the fuck the water hazard is so deep? Dad asked, his face red and arms crossed tightly over his puffed up chest. Sir, it was like that when I purchased the area, the owner said. In hindsight I should have filled it. I will take full responsibility for this. Youd better, otherwise youll be hearing from my lawyer, Dad threatened. I will make the hazard under four feet deep, make the bridge sturdier, pay for any distress this caused your family, and give you and your family lifetime passes for putt putt and bowling, the owner pleaded with Dad. Ill even throw in free pizza from the arcade and deliver it directly to your house when it finishes cooking so your kids dont have to sit here in their wet clothes. Alright, thanks, man. Dad shook hands with the owner, who let out a sigh of relief at Dads agreement. What kind of pizzas would you like? Two large cheese and one large pepperoni, that should feed us all. J. Tillman 47 Get a small sausage and green pepper for Robert, I chimed in, wanting to surprise Robert with his favorite pizza. The owner looked at me, but Dad waved me off. Go check on Robert, Dad said before following the owner back inside. I sighed and hung my shoulders hopefully he would do this for Robert. A shirt draped over my shoulders. Ian had snagged one that the employees had brought out for Robert. I pulled it tighter around me. Thank you, I said. You okay? Ian asked. I nodded. Charly, Robert said. He looked at me and held out his hand. I walked over to him and helped him to his feet before he wrapped his arms around me tightly and buried his face in my still wet shirt. We stood like that for a few moments before I started to dry him off with one of the shirts he was buried under. I think we should go, Tasha finally said, walking toward the parking lot with Shaunda in tow after Dad had returned from inside. Okay. Follow me back to the house. Pizza will be delivered in twenty minutes or so, Dad said. Tasha nodded and motioned for Ian to follow her. Ian gave one last look to me, standing on hot concrete, barefoot, soaking wet, and holding my youngest brother, before following his mother back to the van. We have to go, Robert, I said, drying off his hair I want to go home, he mumbled. Were heading to Dads. J. Tillman 48 No, Moms. I sat in a moment of silence. I want to go there too, but its Dads night. But why? Because they said so. Robert let out a shaky breath and looked at me. Come on. I smiled down at him I told Dad to get sausage and green pepper pizza for you. Okay? Robert nodded his head and gratefully took my hand to help stand up, then we trudged off to the truck, both cramming into the back half seats. The drive wasnt more than ten minutes, but uncomfortable in wet clothes. The radio chimed 80s songs in the background. Back at the house wasnt much better. Robert and I changed into pajamas. Ian took most of the long couch, Shaunda had the bean bag chair and Dad and Tasha were sitting in the love seat, with Louie on the floor. Robert and I sat at the table and played war until the pizza came. The Fellowship of the Ring played in the background and no one paid attention to it, yet no one talked, opting for the uncomfortable silence that fell between them. The doorbell rang and Shaunda jumped up to answer the door. Pizzas here! she shouted, throwing open the door. Dad and Tasha followed, coming back with a small stack of pizzas. They placed them in the kitchen, where everyone grabbed a paper plate and pulled pizza in every direction. Did you order sausage and green pepper like I told you to? I asked. Thats disgusting, Shaunda said, piling her plate high with cheese pizza and walking away. J. Tillman 49 No, I didnt. I didnt know that there were any special requests. I got two cheese and one pepperoni, Dad said, grabbing a few pepperoni slices and walking back to sit on the couch. Tasha took a single slice of cheese and Ian took a few of both. Louie took the rest of the pepperoni, leaving 4 slices for both Robert and me to share. Robert looked like he could cry. I took his plate and set it on the counter before pulling him into a tight hug. You promised, he mumbled. I know, but he didnt listen, I whispered into his hair, giving him a big squeeze. I dont want plain cheese and pepperoni makes my stomach hurt. Ill make you something else then, how bout that? I let go of my brother and opened the fridge, only finding a couple bottles of Coors Lite, a limp head of lettuce, and a moldy cucumber. I threw the cucumber and lettuce out and opened the freezer. Only empty ice cube trays. I shut both doors and opened the pantry door, scanning the lines of crackers, chips, and microwave mac n cheese. Robert looked inside as well, pulling down a package of strawberry Pop Tarts and a cup of ramen noodles. You want this? I asked, receiving a nod from Robert. I filled the tea kettle with water and let it heat up while Robert went back to the table and opened his package of Pop Tarts, scattering crumbs everywhere. I put two pieces of pizza on my plate and set it down next to Robert, standing close to the kettle as it warmed up. I opened the cup of noodles as the kettle started to hiss. Charly, what are you making? Dad asked over his shoulder. Cup of noodles, I responded. Why arent you eating what we got? J. Tillman 50 The noodles are for Robert. Robert, you like pizza. Why are you getting noodles? I dont like cheese pizza. Robert spoke with his mouth full to the table Grab some pepperoni, Dad insisted. Roberts eyes welled with tears. Robert, whats the matter? Pepperoni makes his stomach hurt, I said, bringing over the cup of noodles and a fork to Robert. Since when? Since forever. Thats why I asked about the sausage and green pepper. Thats the pizza he likes. Im sorry, Robert. I didnt know. Ill order you your own pizza next time, okay? Robert nodded and all eyes returned to the TV, actually watching the movie this time. I patted Robert on the head and sat to eat my two pieces of pizza. I wanted all four, but knew that as soon as I sat down, someone would snag them and they would be upset with me for stealing the last of the pizza. Sure enough, Louie and Shaunda entered the kitchen at the same time, each taking a piece and sitting back on the bean bag chair together. They were becoming good friends. Ian fell asleep on the couch, a slice half out of his mouth. Ian! Tasha shouted, startling him awake. He looked at his mother, wiped his mouth and finished eating his pizza before going back to texting. The night passed in silence. I cleaned up the kitchen because Dad didnt really know how hence the paper plates. I flattened the empty pizza boxes, shoved them in the J. Tillman 51 trash can, washed Roberts fork and put it away, then went into the living room and took the empty plates and threw them away as well. I wetted a paper towel and wiped up the crumbs from Roberts Pop Tarts and threw that out before returning to my card game with Robert. The Two Towers followed The Fellowship of the Ring and by the end of that movie, most everyone was asleep on the couch or floor except for me. Robert had moved to the floor once he got bored of playing cards with me. It was time for bed. I helped Robert off of the floor and walked him upstairs, kicking Louie and Dad awake as well. Dad looked at his watch and nudged Tasha awake. Its time for bed. Looks like we fell asleep during the last movie, he said. Thats okay. We can watch the last one tomorrow. Tasha smiled and stretched, nudging Shaunda awake. We need to figure out sleeping arrangements. Louie and Robert have a bunk bed and Charly has a day bed with another mattress underneath the one she uses. So Shaunda can sleep in Charlys room. Im assuming Ian is fine on the couch. He just needs a blanket. At the sound of the sleeping arrangements, Shaunda and Louie looked at each other, then gave puppy dog eyes to their parents. I wanna sleep in the bunk bed, Shaunda whined. She can take Roberts bed and Robert can have Charlys spare, Louie piped in, not asking his brother if it was okay. J. Tillman 52 Well, I dont think that would be appropriate, Dad started. He looked at Robert, but saw that he was clinging to my shirt, giving him his own puppy dog eyes. Boys share a room and girls share a room. Thats the rules here. Im not climbing the ladder to get in my bunk bed, Robert said. Its fine, he can stay in my room. I dont mind, I said, putting my arms around Robert. Please, Dad? Louie asked. Please, Mom? Shaunda begged on her knees. Tasha and Dad looked at each other for a quick second before Dad sighed. Alright, fine. Shaunda can have the top bunk and Robert can get the spare bed in Charlys room. Yes! Shaunda shouted, following Louie down the hall and up the stairs at full speed. Ian looked up once. Could I get a blanket? Ian asked. Charly? Dad asked, looking at me over his shoulder. Ill go get one from upstairs. Ill be right back. Thank you, Dad and Ian said at the same time. Robert and I walked up the stairs and Robert grabbed his bag from his room, walking silently over to my room. I opened the hallway closet and pulled out a couple of Christmas throw blankets and headed back downstairs. When I rounded the corner of the hallway, I stepped back as I saw Dad and Tasha kissing. I looked horrified, watching this intimate moment between the two, remembering that Tasha was the woman from the J. Tillman 53 park, the one Dad said he loved when he was still married to Mom. My heart broke and I did my best to hold back tears. Somewhere in my mind, I thought maybe Mom and Dad could get back together, but that thought disappeared with this kiss. I backtracked through the family room and the kitchen to the living room to hand Ian his blankets. Thank you, Ian said. I nodded. Are you alright? You didnt get hurt at the puttputt course, did you? Im fine, thanks for asking. I cleared my throat. If you need anything else, everyone is sleeping upstairs. If you feel uncomfortable down here, theres a futon on the loft you can sleep on. Ill be fine down here, Ian said. Okay, I said and turned around and trying to keep my calm checking the hallway again to see if Tasha and Dad were still there, but they had disappeared upstairs. I walked up, hearing giggles come from the twins room. I opened the door and saw Shaunda on the top bunk leaning her head over and making faces at Louie, who was giggling uncontrollably. Hey, Charly! he finally laughed out and Shaunda whipped her head around to look at Charly. Brush your teeth, I said. I dont have a toothbrush, Shaunda said as Louie groaned, getting out of bed. Use your finger then. Thats gross, Shaunda gagged, plugging her nose. J. Tillman 54 Whatever. I walked to my room and told Robert the same thing. All three young kids crammed themselves into the kids bathroom, so I knocked on Dads door to see if I could use his bathroom, but the door was locked and all I heard was a few grunts before shushed giggling. I knocked again and received stilled silence. Giving up, I waited in the hallway for the kids to be done when I noticed Ian make his way upstairs and lie down on the futon, still in its couch position. I rolled my eyes and nudged Ian, getting him to stand up while I put the bed down. He nodded his head and laid down, watching me as I stood in the hallway. Shaunda ran out of the bathroom with Louie right behind her. I followed them into the room and waited for them to get into bed before I turned the light off and pulling the giant Pikachu pillow stopper in the hallway so the door didnt shut all the way. I dont need that since Robert isnt here, Louie said. Yeah, no one in here is a baby and scared of the dark, Shaunda said and laughed. Watch your tone, I said to Shaunda. She rolled her eyes as I kicked Pikachu into the room and shut the door. Robert finished up in the bathroom shortly afterwards and silently headed to my room, looking sad. I entered the bathroom to brush my teeth, followed in by Ian. When I finished brushing and spit, Ian finally spoke. You really take care of your brothers. Theyre family, I said. That may be, but I would let have Shaunda drown a little bit. She might grow up a bit. Shes fucking annoying. J. Tillman 55 I blushed when Ian cursed I never thought I could cuss because I was pretty sure I would get my butt whipped for saying them. How can you say that about your sister? Halfsister, he corrected me. You have the same Mom? I asked before I could stop myself. No, Dad. So, Tasha isnt your mom? No, but she raised me. Shes a total drama queen. Forced me to come down here this weekend, even though I permanently live with Dad. But Im glad I did. Ian smiled at me. I laughed I wasnt the only one who didnt like Tasha. Well its a good thing you did, otherwise all hell would have broken loose, I said. Ian nudged my shoulder and chuckled. Look at little sis saying big words now. Ha. Ha, I said back, walking out of the bathroom with Ian behind me. Good night, Charly, he said. Good night, Ian, I said back before entering my room and shutting the door. I turned on the butterfly night light for Robert and opened a window after I had pulled out the spare bed and set it up, finding an extra pillow for Robert in the closet. I turned the overhead light off and crawled into bed, curling up around my few stuffed animals. Charly? Robert asked after a few minutes. Yes? I rolled over to face him. His cheeks shined in the faint light. I saw Dad kiss Tasha earlier. J. Tillman 56 Me too. Do think hes going to marry her? Dad wont leave, I said, doubting my own words. Tasha scares me. I dont want her to take Dad away. Robert hesitated for a moment. Why did Louie leave me? Im also scared youll leave me like Louie did today, Robert said after a moment. Louie didnt leave you. He just made a friend and you can be friends with Shaunda too. I tried to stay positive. Shes annoying, Robert said. We both giggled until Roberts laughs turned into silent sobs, making him shake. Come here. I pulled him toward me and wrapped my arms around him, letting him cry into my shoulder. Everything is going to be all right, okay? Ill never leave you, I promise. J. Tillman 57 Scars Charly slams the door shut behind her, locking it before pacing her room, clenching and her fists repeatedly. They couldnt be doing this. They wouldnt be doing this, not to her, not to the twins. They are a family without her . But not like that mattered. Her father isnt going to listen to anything she has to say. After all, who would listen to a moody twelveyearold anyways? No one. She knows that alreadyfar too often people ignore her because of her age. Not anymore. Charly isnt going to take it. In a fit of anger, Charly takes her wooden desk chair, the one her grandfather used to sit in while he drew cartoons for the daily newspaper, and throws it at the wall. The chair leaves a sizable dent. She grabs the chair again and beats it in the same spot until the wall caves in, holding the chair hostage in the drywall. She yanks on it a couple of times before one of the legs comes off and she stumbles backwards, bumping into her bedside table that has her family lamp. Holding the leg chair like a baseball bat, Charly swings at the porcelain lamp and sends it flying across the room in pieces. A few chunks fall limply on the floor while others rain on the window. Take that, Charly says, letting out a breath she doesnt realize she is holding. A knock sounds against the door. Charly? It is her . Are you okay in there? Charly doesnt say anything back. She slides her hand up and down the wooden leg until a fiveinch splinter catches her at just the right angle. She cries out in pain, dropping the chair leg onto her foot then kicking it at her closet door, watching it bounce off harmlessly. J. Tillman 58 Charly? she says with more urgency. Open the door. The door handle jiggles. Charly says nothing and focuses her attention on the splinter. She tries to push it out upwards, but the splinter pushes in more and breaks off into a thorn further under the skin than she can reach to get it out. She cries out again and swings her hand around to get rid of the pain. Charlotte! The door bows a little bit as she tries to force it open with her small model frame. Charly needs out. She sees the chainlink fire escape ladder lying on the floor next to her windowsher mother had insisted that she have one in case something ever happened, especially with her door constantly locking her in and out of her room. She pulls open one of the windows, pops the screen out and attaches the ladder. Rapunzel lets down her golden hair, Charly says. The chainlinked ladder clatters down the plastic siding of the house. Theres more banging on the bedroom door her fathers voice adds into the mix. Because Rapunzel can save herself and choose her own life. Charly scampers down the ladder, the thorn sliding further into her hands as a drill squeals and the door handle jiggles. Jumping off the last two rungs onto the frost covered grass, a chill runs up her spine the drill still sounding in her now abandoned room. She clutches her splintered hand to her chest and bolts towards the road her house sits next to, crossing into the neighbors yard. The family of four sits at the dinner table, the mother and father smiling at each other while the children laugh and the dog sits patiently next to the table, waiting for food to drop. Charly looks longingly at the family before turning back to her prison tower, run by the evil queen and the corrupted king. She J. Tillman 59 has to escape. She wants what she cant have, what is right on the other side of the door to another house. She holds back the tears that form in the corners of her eyes and takes a deep, steadying breath. She wanted something she couldnt have. She begins to walk down the road, away from home. Cars drive past in the dark, their headlights blinding her, but she keeps moving further down the road, ignoring the world around her. Her name is called and she jumps, looking behind her. It is her father, but the house isnt in sight. She pads her way across the cold concrete into the woods as her fathers voice echoes in the air again. Charly freezes in the underbrush, barely breathing in case it her foggy breath could give her away. As she looks down the road near her house, she sees the twins running around the yard. Robert seemed frantic to find his sister but Louie stares at the ground in front of him and doesnt move. She abandoned her brother when she always told him and his other half, Louie, she would be there for them. She left, not thinking twice about her actions and letting her emotions get the best of her. Charly almost gives in to the temptation of going back and comforting her brother, taking the consequences of her actions Charly! her dad shouts to her, almost snarling, making Charly shrink back into the underbrush, even though Dad is a hundred feet or so away from her on the other side of the road. Charly! he shouts again, running into the road and looking around for her. Charly swears that he sees her as he walks past. Ed! Tasha runs up behind Dad, her small heels clicking venomously on the asphalt. Did you find her? she asks. J. Tillman 60 Does it look like I found her? Dad spits back. How the fuck am I supposed to know? Tasha stands with her hands on her hips. I told you to wait until Ian was able to come down and keep her calm. Who knows when that would be with his football schedule and ridiculous practice times. Besides, the realtor puts the sign in tomorrow. Thought it would be better to tell them, Dad says. I knew something like this would happen. Oh, that my daughter would go bat shit crazy and run off into the woods? Cause that one threw me for a loop. Shes always been crazy. Her only comfort is this area and you just broke that. Now she is going to be a shit bag until she stops coming up and I know that will break you. My daughter isnt allowed to stop visiting until she is an adult, Dad says, flipping off a car that honked at him for standing in the middle of the road. In the noise, Charly shrinks back so she cant see her dad arguing with Tasha, but she can hear them. They didnt notice the extra noise. Yeah, tell me how that one goes. Shes fucking crazy, okay? There is something wrong with her in the head. You need to call the police before she does something that could be dangerous to herself or others, Tasha says, her heels clicking again faintly further away from where Charly sat. I cant file a missing person report for an entire 24 hours. Shes fine. Shell be home in a few hours. And when that happens, I expect an apology. Dads footsteps faint J. Tillman 61 away and Charly sits with her knees curled up to her chest and rocking slowly back and forth as the sun begins to sit in the sky. I refuse to go home. I dont want to be anywhere where she is. Charly stands before she races further into the forest, heading south before turning north in case anyone was following her. The oak trees scratch her exposed arms and legs while she escapes further into the forest, maples dropping leaves on her this October night, a time when people dream about pumpkins, candy, and monsters. It begins to rain. A gnarled old tree stands in front of her with low lying branches and dense leaves to hide anyone inside. She tries to climb up using both hands, but the added pressure doesnt go well with the thorn, so she hauls herself up with one hand and a set of fingers to grip smaller branches. The thick layer of leaves keeps Charly mostly dry, but the wind whips through and makes her skin prickle with goose bumps. Once she is sure no one is behind her, she slowly climbs down the tree. Her soft feet became bloody and raw from her wandering, so she stops, sitting on a fallen tree that connects both sides of a small creek together, her wet hair plastered to her face and thunder clashing over head. I just want a happy ending, Charly says, begging the sky and wishing on the second star on the right. *** A few hours go by as she sits there. The storm passes and Charly doesnt move, her clothes starting to dry off. I cant go back, she says out loud, picking at the skin around the splinter to try and get the thorn out. They dont understand. J. Tillman 62 Leaves rustle behind her, followed by a dog bark. Charly turns too fast and falls off of the tree stump into the slightly swollen creek, getting her clothes wet again. A wet nose touches her knee and Charly sees a pit bull staring at her. Her heart begins to beat faster and she starts to back away slowly before the dog cocks its head to the side and let its tongue loll out, drool sliding off the tip onto Charlys foot. It sits down and remains silent, staring curiously at the girl in the creek. She looks at the dog before leaning forward and reaching out a hand to pet it, cooing to it as she did so. Its okay, boy. I wont hurt you. The dog leans forward towards her, making Charly flinch slightly before she feels soft fur in her hand. She looks and sees the dogs head nestled in her hand, its eyes shut and leaning into Charlys hand. She pets the dog more and brings herself closer to him, checking his collar for a name. Hey Bubba, she says, smiling as she gets a lick on the cheek in response. She pets him with both hands and then gives him a hug. When she pulls away, he licks her injured hand and stands up, taking a few steps away from Charly and looking back over his shoulder. Where are you going? Charly asks, standing up, watching Bubba take a few more steps away from her and stopping to look at her again. She follows the dog, curious to where she is headed. They head further into the forest, just the two of them walking side by side. Every once in awhile they come to the edge of the woods, peering into the houses and seeing families inside, gathering around the TV, the fireplace, or the kitchen J. Tillman 63 table carving a pumpkin. Laughter fills the air as windows are open to let in the cool breeze after the storm. After a few houses, Charly stops, Bubba looking at her curiously. I cant keep doing this, she says. Bubbas tongue lolls out of his mouth. I cant keep saying that things will change and go back to normal. They wont. Charly falls to her knees in front of Bubba. He pulls his tongue back into his mouth tilts his head to the left, looking at Charly as she begins to cry. Dad is leaving and I cant stop him. Charly buries her head into Bubbas neck as Bubba licks her ear to try and calm her down. She continues to cry with Bubba for another minute or so before she straightens up and looks around, finding a small hollow at the base of a willow tree just a few feet from her. She crawls over to the hollow and curls up inside, deciding that she needed sleep, but didnt want to go back to the house. Bubba curled up next to her and together they fell asleep under the tree, leaves rustling in the gentle breeze and falling to hide Charly in her new home. *** Chills run up Charlys spine that wake her out of her sleep. Her body sits covered in goose bumps, her feet are a deep shade of purple, and her fingers refuse to move. Bubba stirs next to her and uses his body heat to try and warm Charly up, but nothing seems to help. Bubba then nudges Charly out from under the tree and starts guiding her east, stopping occasionally to lick her fingers and toes to warm them up a bit. Soon, she sees lights to a house and hangs back while Bubba keeps moving forward. He barks at her, but she steps backwards and hides behind a cluster of trees Bubbas bark has caused movement on the back porch in the morning fog. J. Tillman 64 There you are boy! What did I tell you about running off into the forest? Its dangerous in there for you. A boy around Charlys age comes and attaches a leash to the dogs collar. Bubba doesnt move he sits still and looks over his shoulder. The boy tugs a bit more, but Bubba doesnt move. Bubba, whats wrong? The dog stands up and begins to walk towards Charly, who tries to make herself smaller as the boy looks around the group of trees she is hiding in. Bubba comes and sits next to Charly while the boy stares at her from up above. She reaches out and pets Bubba, who gives her a lick on the cheek in return. Hello. Charly glances up at the boy and shrugs her shoulders, focusing on the spotted pattern on Bubbas back. Im Justin. Charly. Its nice to meet you, Charly. I see you have already met Bubba. The dog smiles. What are you doing in the forest? It looks like youve been out here for a while. Justin motions to her. She shrugs her shoulders again. The three of them sit in silence, Bubba panting between Charly and Justin as the wind makes the trees creak. Why are you in the forest this early in the morning? Justin asks. I ran away, Charly says after a few moments. Why? My dad is replacing me with someone else. J. Tillman 65 Justin gives her a quizzical look, but shrugs his shoulders. Well, I can take you back to my place. Lots of food and clean clothes. Those sound good? Charly nods as her stomach grumbles. Justin stands and sticks out his hand for her to take, but she ignores it, standing up herself and keeping her hand tucked close to her chest, not letting Justin see the thorn or her frozen hands. She is terrified for some reason of what Justin would do if he found out about it. Plus, she doesnt like people feeling sorry for her her mother already did enough of that. No one else needs to worry about poor, little Miss Charly who is incredibly capable of taking care of herself, thank you very much. Justin still pulls Charly to her feet by grabbing her arm, even after she ignores his help. They look at each other for a brief moment before Charly looks down at her feet, pink rising to her cheeks and warmth growing in her stomach. Justin laughs nervously before letting her arm go and walking away, gesturing for her to follow. They walk in silence until a small house with a wooden deck comes back into view. This is home, Justin says as he walks up the steps of the deck to the back door. Bubba pushes Charly along her hand still clutched to her chest. Mom! Do we still have bacon from dinner last night? Justin yells as he walks into the kitchen, Charly standing at the back door. No, you ate the rest of it this morning for breakfast. You still hungry? A woman the same age as Charlys mother emerges from the hallway and stops midstep to stare at J. Tillman 66 the dirt covered girl in her house. Justin! she calls, not taking her eyes off of Charly. Justin walks up next to his mother, a banana hanging out of his mouth. Oh. Mom, he says after swallowing. This is Charly. She was wandering around the woods, saying she was lost and hungry. Charly almost protests because she is definitely not lost her house sits across the street. But Justin winks at her and she smiles a little bit, trusting him almost automatically, even though her instincts are screaming that no one could ever be trusted again. Yet she trusted this newcomer so easily. Why? Her stomach grows warm again and she stares down at her bloody and frozen feet, thinking about Justin. Justins mother is still a bit wary of Charly, but she shakes her head and smiles, stepping forward and crouching in front of Charly. Are you lost? Kara, Justins mom, asks. Charly nods yes. Do you have a family? Shoulders shrug in response. Are you hungry? Charlys stomach growls before she says anything. Justin and Kara laugh and lead Charly to the kitchen of this new kingdom, exactly like the one she wants. Well, Charly, Justin says. What do wanna eat? He throws open the fridge doors dramatically, earning a giggle from Charly, her cheeks becoming a permanent shade of pink around her new friend, an idea that has become foreign to her in recent years. J. Tillman 67 Honey, dont overwhelm her. Ill just toast some bread and scramble eggs. Does that sound good? Kara asks Charly. She nods again. Also, Kara speaks to Justin, go get a few blankets and a sweatshirt of yours. Okay. Justin closes the fridge doors and runs down the hallway, disappearing into another room. Charly stands awkwardly in the kitchen as Kara starts cracking eggs into a bowl. Excuse me, Charly says. Kara turns to look down at her from her intimidating height. Wheres the bathroom? Kara smiles and leads Charly down the hall to a small, closetsized bathroom. Here we are. Just holler if you need anything. Thank you, Charly says as Kara shuts the door to leave the small girl in peace. Charly sighs and looks down at her hand. She struggles to unfold her right hand her fingers slow to respond to her wants but she is able to get ahold of a larger chunk of skin near the thorn. She tugs slowly on it and pain make her eyes black out for a second. She sways slightly before stumbling to sit on the toilet. Bubba pads to the outside of the door and whines quietly. Charly gives another tentative pull, receiving the same reaction. She grinds her teeth together, fingering the skin before tugging up on it quickly, pulling live skin away and exposing the thorn, blood oozing from her hand. She gives a small cry, clenching her hand to her chest and biting her lip, almost putting a hole through it. Bubba barks loudly, his voice echoing in the small hallway. J. Tillman 68 Bubba, dont shout, Justin says before knocking on the door. Charly? You all right in there? Charly cant form words from the pain, but she tries to shrink away into the side of the toilet next to the wall. The toilet brush and plunger clatter around but she doesnt care. She only wants to disappear for a while, maybe forever. Charly? Justin asked again, sounding concerned. Charly shifts and accidentally pushes the thorn further into her hand after almost getting it out. She cries out in pain, kicking the toilet paper holder into the wall and slipping so her head hit the toilet. Charly! Justin shouts, opening the door, Bubba barking wildly, pushing past him and over to Charly. Charly and Justin make eye contact before Charly hides her face in shame. It isnt until Kara comes into the bathroom that Charly starts to cry. Kara pulls Charly out from behind the toilet before she notices the thorn sticking out of her right hand. Kara takes Charlys hands in hers and sees that they are riddled with cuts and scrapes as well. Kara has pity in her eyes for such a young girl in so much pain. Charly is taken aback by this look and cries harder. Charlie thought the family would be incredibly upset by her injuries that she would rather have gone without the function of her hands than ask for help. Justin, get me some old towels. Kara pulls Charly closer to her, cuddling and petting the girls ratty hair, Charly crying into her chest as she let the emotion and the pain out she has kept in for a long time. Justin returns with towels and Kara wraps Charlys hands in them before pulling her to her feet and leading Charly out to the car. The ride remains in strained silence J. Tillman 69 except for Charlys whimpers and sniffling. As they pull into the parking lot, Charly finally speaks. Call my mom. Kara turns around. Whats her phone number? 3175551274, Charly recites from memory. What about your dad? Whats his number? I dont have a dad, Charly says after a moments hesitation. Kara nods and helps Charly into a wheelchair before going to the receptionist to get Charly checked in. Kara explains the situation and Justin sits next to Charly, placing his hand over her towelwrapped ones. Its gonna be all right, I promise, he says. Charly nods. Whats your moms name? Kara asks, typing numbers into her phone. Amanda Stephens. When Kara walks away to call Charlys mom, a nurse comes over to the children. My name is Laura. Im going to ask you a few questions, okay? Charly nods again and tells the nurse her full name is Charlotte Ann Stephens and that she had gotten the huge splinter from the end of a broken chair while destroying her room. Charly refuses to look at anyone when the nurse unwraps her hands to see the thorn. They are quickly wrapped backup. Well take her in right away. Has family been contacted? Her mother is on the way. I just got off the phone with her, Kara says, rejoining the group. J. Tillman 70 Okay, Ill take her back to get started on removing the splinter. Come this way please, the nurse says. She changes, has an IV tube connected to her arm, and her hands are swollen from the thorn and the cold when Justin enters the room. The pair look at each other but say nothing. He only sits in a chair pulled up next to her bed and places his hands on her shoulder where she wouldnt be hurt by his touch. I dont have a dad either, Justin says as Kara and the nurse talk quietly outside the door of the room. He left before I started school. Its just been me and mom. Plus Bubba, of course. Things werent crazy? Charly asks, looking at Justin. Well, yeah. It was just Mom and me. It was a lot better. There was less fighting and yelling. I wasnt scared anymore. Im scared though, Charly mumbles. It gets better. Thank you, Justin, Charly says, giving him her first genuine smile. He returns her smile with a wink and nods his head. *** It takes thirty minutes for Charlys mom to arrive at the hospital. By that point, the thorn is removed and Charly is all patched up. Mom jogs into the room, heels clicking on the linoleum. Charly, sweetheart, she sighs, embracing her daughter as gently as possible. Are you alright? Yes. J. Tillman 71 Kara pulls Mom aside to explain the situation as the doctors say that Charly is good to go home, but shouldnt do anything crazy for the next three weeks while her hands heal. And with the way her hand is bandaged, she cant write since shes lefthanded. Mom drives Charly home, leaving Justin and Kara waving at the entrance doors, promising to visit. Once home and in bed, Charly hears the front door open, followed by thundering feet. The door opens quickly to let two nineyearold boys in the room before shutting again, voices yelling behind it. Charly! Robert says, crawling into bed with her before anyone could stop him. Hi, Charly says, moving herself to give Robert a little bit more room in bed with her. Louie sits at the end of the bed, looking at Charly briefly before he pulls out a battered Gameboy Advanced and plays a game silently, ignoring the world. Why did you run away? Robert asks. Charly remains silent, only shrugging her shoulders and placing her cheek on his head. After a few minutes the yelling stops. Her dad entered the room, with Mom close behind. Charly holds back a cry as her father sits next to the bed. Hey there, kiddo, he says, brushing hair behind her ear. She jerks her head away and stares at the opposite wall. Why did you run away? he asks. Go away, she whispers, rolling away from him and facing the wall and Robert. J. Tillman 72 Charly, whats happened to you? You dont exist anymore. I hate you. Dad sighs and gets up, looking down at Charly in bed and leaves, seeing himself out of the house, the walls shuddering as the door slammed closed. J. Tillman 73 Cash for a Wedding Bachelors beware. Salisvilles sweetheart, Tasha Callow, is now engaged. After a sad break up with her high school sweetheart, Tasha was contacted by an old friend from college, Edward Ed Stephens. IT was love at first site. After two years of dating, the couple is happily engaged, and wedding plans are underway for a fall wedding later this year. Could she be anymore full of herself? Charly asked, throwing down the newspaper that showed a picture of her father and his fianc. Ian stomped into the kitchen, ignoring Charlys outburst against his stepmother, like he normally did when Charly was around. She could get away with saying things around him and not get in trouble for it he didnt like Tasha anymore than Charly did. Shaunda followed closely behind Ian and that was Charlys clue to shut up. If Charly sneezed funny, Shaunda would say something and Charly would be sent to her room as punishment, which is where she wanted to be in the first place. Tasha usually made Charly help her make breakfast on the weekends all the kids were in the cramped house, which meant that Charly made breakfast while Tasha sat on the couch and watched the morning news or reruns of Americas Next Top Model . This Friday morning, Tasha had gone out to WalMart since they were out of eggs and Dad went to work. Charly had still been woken up and asked to make toast for the family, which she did, all buttered up with a shaker of cinnamon sugar on the side of the plate in case anyone cared for it. Ian stood by the fridge, looking at Shaunda like she was some strange being looking up at him with crossed eyes, until he pulled down a package of Pop Tarts for her from the top cabinet, J. Tillman 74 where she couldnt reach and eat them all at once. Charly rolled her eyes, so much for making breakfast. Eight oclock rolled around and Shaunda sat in front of the TV watching cartoons while Charly cooked eggs Tasha had disappeared to her room in the back of the house and Ian had left for a run, conditioning himself for the upcoming fall sports season. The eggs finished scrambling and Charly put them on five different plates, one for each of the kids including herself and one for Tasha even though she didnt eat much, if any. Charly knocked on her brothers door and opened it, flicking on the light and seeing soda cans everywhere with the TV still on. She crossed the room and turned off the TV, pulling blankets off of beds and receiving whines. Breakfast of scrambled eggs and toast is ready. And I want you to throw the cans out before Tasha comes in and yells at you for the mess. Robert mumbled incoherently, rolling a bit too far and falling out of bed onto his back, one leg still in bed. He groaned and picked himself up as Louie covered his head with a pillow. Robert stole the pillow, noticing a large drool stain on it. Dude, you drool in your sleep! Robert shouted, throwing the pillow back and running out the door to the kitchen, Louie stumbling after him. Do not! Louie shouted back. Yeah, Louie doesnt drool! Shaunda shouted from the living room, not taking her eyes off the TV. Enough. You are all ten years old, does it matter who drools and who doesnt? Charly asked, all three of them staring at her. J. Tillman 75 Shaunda shrugged her shoulders and changed the channel, finding Mythbusters far more entertaining than ScoobyDoo . Anyways, breakfast, Charly says, pulling the twins attention back to her. Pick a plate. Dont argue cause its the same amount. I have to go get Tasha because she wanted help with this garage sale thing. Charly left the kitchen and knocked on Tashas bedroom door. There was mumbling and Tasha answered the door with a cami, sweatpants falling off her hips, and still half asleep. Seeing Charly, she pulled up her pants and grabbed a robe off the back of the door. What is it Charly? Its eight. You wanted to open the garage sale at that time. Well, I have a headache, so why dont you do it yourself? Money is in the freezer. Get some cold hard cash. Tasha laughed at her own joke and closed the door. Charly sighed and pulled the money apron out of the freezer before heading to the garage. She opened the door and began displaying the pieces of furniture that her father no longer wanted, even though he brought up from the move. The kids clothes were all hung on racks around the garage and Charly turned on the local radio station, sitting back and beginning to read the last Harry Potter book that had come out six days prior. She sold some of the boys old toys and a couple of outdoor chairs by the time Tasha showed up. She carried a few boxes with her, Ian in towmust have gotten back from his morning run already. They placed the boxes on the table and Tasha opened the lids. Curious, Charly bookmarked her spot and walked over to Tasha, who had stickers labeled $3 in her hand. J. Tillman 76 Inside the three large boxes was Charlys lost VHS collection. She hadnt seen them since the move up north. Where have these been? she asked. In the house, Tasha said. Why didnt you say anything. Ive been looking for these for years. Charly grabbed a box, put the lid on, and tried to take it back into the house. Ian entered the garage again with three more boxes. Thats the last of them, he said before disappearing back inside, refusing to make eye contact with Charly, who pleaded silently with him to back her up on this. Thanks, honey. What did you say Charly? Tasha asked. Ive been looking for my movies for years. I want to take them home. Tasha took the box of movies from Charly and placed them back onto the table. No. They belong to the family, and we no longer need these. She put stickers on them, one by one. Besides, you havent wanted them since your dad moved up here, Tasha argued back. I didnt know they were here. I want to take them back. Charly, please dont argue. Tasha pushed Charly away from the table back towards the chair she had been sitting in. She stared in disbelief before running inside, dialing Dads cellphone number. Hey there, Dad said Dad! she shouted. I found my VHS collection and Tasha wants to sell them. Sorry I cant reach the phone right now, his voice continued. J. Tillman 77 Dad? Charly asked. Leave me a message and Ill get back with ya soon. See ya. Charly hung up the phone and stared at it as it hung on the wall, hoping Dad would call back. The phone remained silent. After a moment, she decided to head back outside. Charly grabbed a few movies and tried to make it back inside, but Tasha grabbed Charlys arm as she was helping the grandma who lived across the street pick out movies. Charly, let go of the movies. We have no way to play them now. Besides, Ed told me to sell them, so let them go. They arent yours, anymore. Charly stopped and let go of the movies, staring at the white garage door for a few seconds, not believing her ears. Dad didnt care about her attachment to those movies. He didnt understand how they seemed to be the last part of her childhood that she remembers being happy. Charly clenched her fists and turned back around, determined to not let her memories disappear. But as she stood next to the freezer filled with deer meat, Tasha sold a giant stack of all of the Disney princess movies, including the straight to VHS releases of Aladdin and Beauty and the Beast to the grandma. My granddaughter is going to love these, she said, and smiled at Tasha. I hope they are loved as much as they used to be here. Tasha said and smiled back. The woman grabbed her paper sack of movies and saw Charly staring dumbstruck at her. Oh, this must be Eds daughter I have heard so much about. Yes, Tasha said, turning around and pulling Charly closer, putting an arm around her shoulders and giving her a side hug. This is Charlotte. She used to watch J. Tillman 78 these movies all the time but outgrew them in favor of Harry Potter, so I want the movies to continue to experience love like they should. Oh my, Harry Potter? The woman gasped, noticing the book in the chair and shaking her head. Do you know that Harry Potter promotes Satanism? I heard, Tasha said back, letting go of Charly and shoving Charly behind her. But if you will excuse me, Mrs. Wilson, I need to go check on my children and make sure that they are up and moving so they dont waste daylight. Well, it was nice catching up with you, Tasha, and congratulations on the engagement. I read about it in the newspaper this morning. Thank you, Tasha said as she disappeared back inside and Mrs. Wilson looked down at Charly. You should be ashamed of yourself for reading such filth. I should take that book and burn it. The Nazis burned books and look where that got them, Charly said before she could stop herself. Mrs. Wilson flushed red. Watch your tongue. Didnt your mother ever teach you manners? Yes, but only to nice people. Not people who buy stolen VHS tapes from children who didnt know their dad and his girlfriend hid them in their room for a year to hope the kids forgot about them. Mrs. Wilson turned pale. She eyed her bag of movies and back at Charly, before turning to walk away. J. Tillman 79 Just be careful, Mrs. Wilson, Charly said, getting a glance from the woman over her shoulder. Mulan doesnt work the best. Shes rather worn when she looks at her reflection. Mrs. Wilson flushed red and she dug in her bag before putting Mulan in her hands and walking away. That was one movie safely in Charlys hands, one she loved as a kid and was the twins first movie they saw in theaters. But Tasha came back out and saw Mulan in Charlys hands and nearly screamed. Did you steal from Mrs. Wilson? No, she gave it back. Said she didnt want it, Charly said. Oh, right, because that totally wasnt the first movie she picked up and was super excited to take home for her granddaughter. No, seriously, she gave it back. What did you say to her? Nothing, Charly lied, staring Tasha down. Tasha looked like she was going to explode, but she calmed herself down as other people came to the garage, looking at the collection of VHS. Fine. You can keep that one and whichever ones dont sell. But, Im sending you to your room. Charly made a grab for Harry Potter, but Tasha snatched it up first. Without Harry Potter, Tasha said, smiling at the shock and terror that crossed Charlys face as her mouth dropped open. Youre gonna catch flies like that. Tasha shut Charlys mouth and leaned back when Charly made a jump for her book. J. Tillman 80 Give it back! Its brand new and I saved up money for two months to buy that myself at the midnight release I dragged my mom to. Charly made another jump at it and Tasha laughed, setting it on top of the cabinet she stood next to. I will if you behave. Inside, now. Tasha snapped her fingers toward the door. Charly looked up at her book on the top of the cabinet and then over at Tasha before taking off the apron and heading inside to her room. She heard Tasha shout for Shaunda, no doubt telling her to watch Charly and make sure she stayed in her room. From the window in Charlys room, she watched as more of her movies left in the hands of others. She had already read every single book in her room and the book she wanted to continue to read was currently stuck in the garage. She paced back and forth, wanting to take things and destroy them, but her right hand would tingle at the memory of last years escape and how she got a thorn in her hand. Hours ticked by and at one point Ian brought her a sandwich and had managed to snag her book back from Tasha. Charly smiled in thanks and Ian left. She ate and continued to read, occasionally looking out the window and seeing more movies leave. At noon, Tasha told Charly she could come out of her room, weird since the garage sales usually went until three. Come on, you need to take a shower, Tasha said. Why? Were going out to a nice place tonight and you need to look your best. You can even borrow one of my old dresses. It might fit you. Tasha left and Charly grabbed what she needed to take a shower. Once out, she ventured into Tashas closet and looked J. Tillman 81 around at the super skinny clothing. None of this was going to fit her, not with her larger chest and wide hips. Charly, these ones on the bed, Tasha said from behind the bathroom door. Looking at the bed were some larger dresses, tags labeled maternity. Charly rolled her eyes and grabbed a dress with blue and green flowers before heading back to her room to put it on and mess with her hair. She left her room and felt naked in the dress. It was tight across her chest, but overly loose around her waist and it came down to her calves, making it look like an old granny dress to her. Shaunda ran around the house in a red dress with her ruby red slippers, Ian wore a button down shirt and a tie. Nice dress, Ian snickered. Charly rolled her eyes and walked to her brothers room, knocking before entering. Louie was taller than Robert at this point, so one of Ians old shirts fit him well enough, and he wore dark jeans since Ians pants were nowhere near the right size. Robert didnt have a shirt to wear, however, and Charly didnt want him to get in trouble for not looking his best. She went back to her room and pulled out one of her button up shirts she wore when she needed to look fancier than necessary. It was still a bit large for Robert and had a feminine shape to it, but when it was tucked into his pants, it wasnt so bad. Robert smiled and hugged Charly, following Louie out into the living room to sit on the couch and wait for everyone else to be ready. Ian stood nervously by the door and Charly sat in the kitchen, waiting to be told what to do next. Tashas voice came from her bedroom. J. Tillman 82 Charly! she shouted. Charly walked over to the door. Would you be a dear and go cut everyone a flower from the backyard? The boys need them pinned to their shirts and you and Shaunda can carry two or three. Sure. Charly went back to the kitchen, grabbed a pair of scissors, and left through the patio out into the backyard to cut flowers. Each of the boys got a purple petunia and she and Shaunda got white lilies. Charly cut a few more for Tasha tiger lilies, and an orange petunia for Dad, because if the kids needed flowers, so did the adults. She headed back inside and had the boys tuck the flower into their shirt pockets. By this point, Dad had returned home early from work and wore a suit and tie, Charly putting the flower through the lapel hole. Whats up? Charly asked. Just getting ready for the wedding, thats all. Dad adjusted his tie I thought the wedding was in September. Didnt Tasha tell you? We closed the garage sale early to go to the courthouse to get married. Spur of the moment thing, since the sale went well. Charly stood still, her hands falling to her side. She should have guessed. Why else would she have to wear a stupid maternity dress and cut flowers from the backyard that shredded all over the place, making it look like she got sneezed on by a bumblebee. Tasha came out in a slinky black dress that hung to her every curve, making a big scene of kissing Dad in the kitchen before heading outside and piling the kids in the car. I called your parents. Theyre on the way. My mom decided to stay home and cook a big meal for us. After the ceremony, because we are cutting it a bit short, Tasha J. Tillman 83 tapped the clock that read 3:49. The courthouse closed at 4 and took three minutes to get there. Mom says she doesnt have any chips, so I told her we would stop by WalMart and pick up a few bags. Sounds good to me, Ed said, bouncing his thumbs on the steering wheel as he sat at a red light, time ticking away. 3:53, they park the car and head inside. 3:55, paid $20 cash for the marriage license. 3:58, wedding performed. 3:59, Ed and Tasha pronounced married. You may kiss the bride. J. Tillman 84 Text Messages April 2, 4:30p.m. Dad: How did your school week finish up Charly? Charly: Fine. Dad: you ready to come up for spring break? Charly: No. Dad: Why not? Charly: I told you. Shelby and I already have plans this weekend to go prom dress shopping and hang out before she visits family in Oklahoma. Dad: And I told you no because we have to prepare for your th grandparents 50 wedding anniversary. Youre on decorations. Charly: Its a gym. Wtf am I supposed to do in a gym, throw glitter around and call it a day? Dad: I told you to come up with something. Youre the artsy one. Charly: Why does everyone say that? Im interested in astronomy, not fucking balloons and streamers. If anything, Robert is more J. Tillman 85 artsy than me! Dad: Charly, watch your language. Charly: w/e Dad: Charly, you will be here tonight. Dad: Charly? Dad: Charlotte Ann, answer me God damn it! Charly: Watch your language. Dad: This isnt funny Charly. _________________________________________ April 2, 4:45p.m. Mom: Ready to go Charly? Charly: Mom, I told you, Im staying with Shelby this weekend. Mom: What did your father say? Charly: No, but Im already over here. Mom: Please dont make things difficult. Charly: Im not going. Mom: Suit yourself. You deal with your own consequences. _________________________________________ April 2, 5:30p.m. Dad: Charly, where are you? J. Tillman 86 Charly: In a black hole. Dad: Charly, why arent you with your brothers? Charly: I told you, Im in a black hole. Dad: Charlotte, this isnt funny. Tell me where you are, Im coming to get you. _________________________________________ April 2, 5:35p.m. Charly: Mom, please tell me Dad isnt coming to pick me up. Mom: Yup. Charly: Dont tell him where I am, please. Mom: Even if I did tell him he wouldnt have listened to me. You know he has been diagnosed with selective hearing disorder. Charly: Mom, did you tell him where Shelby lives? Mom: No, of course not. Charly: Thank you. I love you. Mom: Love you 2 babe. Be safe. Charly: Im invisible. Im safe. _________________________________________ April 2, 5:45p.m. J. Tillman 87 Ed: Where are you? Ed: Charly? Ed: Answer damn it! x2 missed calls Ed: Damn it Charlotte, we are all heading up north, now. Ed: Stop ignoring me Charlotte. Ed: Fine, you come up Sunday. Thats an order. You do NOT want to disobey me again, you hear?! _________________________________________ April 2, 8:03p.m. Evil Queen: Hey Charly, where are you? Evil Queen: I thought you were coming up with your brothers. Evil Queen: Shaunda was excited to see you. Evil Queen: We cant decorate without your artistic eye. Evil Queen: Its lonely without you. Evil Queen: Please stop ignoring me. Its rude. J. Tillman 88 Evil Queen: Charly? Evil Queen: Chaaaaarrrlyyyyyyy! Evil Queen: Charlotte this isnt funny anymore. Answer your phone. x1 missed call Evil Queen: Charlotte, answer your phone. x2 missed calls _________________________________________ April 2, 8:23p.m. Ed: Stop ignoring you mother. Charly: Shes my stepmom. Not my mother. Ed: Dont use that tone of voice with me kid. She is your mother. Charly: No. Ed: We will have a discussion about this later, but your attitude has gotten you into a lot of trouble missy. Charly: Ooo, Im soooo scared. _________________________________________ April 3, 12:56p.m. Charly: Hey Mom, I locked my keys in the car. Can you bring the spare set? J. Tillman 89 Verizon Support: Were sorry, this # has been disconnected. Charly: Mom, this isnt funny. Verizon Support: Were sorry, this # has been disconnected. _________________________________________ April 3, 1:04p.m. Charly: Dad, did you disconnect my phone? I cant get ahold of Mom. Verizon Support: Were sorry, this # has been disconnected. Charly: You fucking serious right now? You are a mother fucking asshole, you know that right? Verizon Support: Were sorry, this # has been disconnected. _________________________________________ April 3, 1:11p.m. Charly: Hey bitch! You fucking Evil Queen. I hate everything about you. Go jump off a fucking cliff you motherfucking piece of shit. And shove a stick up your J. Tillman 90 ass while youre at it. Verizon Support: Were sorry, this # has been disconnected. Charly: Suck it. Verizon Support: Were sorry, this # has been disconnected. _________________________________________ April 3, 1:15p.m. Shelby: Hey Miss Stephens, Charly accidentally locked her keys in the car when we went to Qdoba. Could you bring the spare set? Miss Stephens: Did she lock her phone in the car too? Shelby: No, just the keys. Amanda: Why didnt she call me then. Shelby: Hey Mom, its Charly. Dad disconnected my phone because he called her my mother and I said no and we argued. Now were stranded at Qdoba, not too bad but I dont have a working phone. Amanda: That fucking asshole. Shelby: Tell me about it. Amanda: Ill bring the spare keys and well get you on my plan. He cant do that. What if it had J. Tillman 91 been a real emergency and you couldnt even contact the authorities and you were by yourself? I dont want to think about it right now. Ive had enough of his crap. Shelby: Thank you. Ill buy you a burrito Amanda: Steak queso burrito with sour cream and guacamole please. Thank you. _________________________________________ April 3, 1:24p.m. Amanda: Why did you shut off Charlys phone? Ed: She has no right to speak to me or my wife the way she did. Amanda: Fine, but you cant shut off her phone. That is the only way she could get a hold of anyone. Ed: She can go a few days without a cellphone. She did for almost 16 years. Amanda: No. What if there was an emergency? Ed: Nothing bad is gonna happen. Nothing ever happens in your quiet suburban neighborhood. Amanda: No, Ed. Stuff happens. Charly locked her J. Tillman 92 keys in the car. She couldnt get a hold of me and had to use Shelbys phone to text me. Ed: Well, if she had come up here with me and the boys on Friday, this wouldnt have happened. Amanda: That is beside the point. Sure, it was just a pair of locked keys. But what if it had been something worse? You cant disconnect her phone. Ed: Shell get it back after we talk about her attitude tomorrow after the anniversary party. Amanda: No, not with her driving herself 2 hours north alone. Amanda: You know what, just get rid of her number. Im putting her on my phone plan with the boys, even though you agreed to keep her on your plan so it wasnt so much of a burden for me. Not like you really care about me or the kids. Ed: That doesnt teach her her lesson. Amanda: Well, its good to know youre more interested in punishing our children rather than making sure theyre safe. Ed: You were always the pushover. No wonder the children are unruly. J. Tillman 93 They dont have any discipline. Amanda: Edward, theyre just children. Ed: Theyre teenagers, almost young adults. They need to behave. Its a good thing I got out when I did. I wouldnt let the children be unruly with a bad mother such as yourself and all. _________________________________________ April 3, 3:43p.m. Charly: Hey Robert, its Charly. Had to get a new phone number because Dad cancelled mine. But dont tell him please. Robert: Okay. Hes super pissed. Charly: I know and I dont care. Robert: Hes scaring me. Charly: If anything happens to you or Louie, call the cops okay? Robert: Now youre scaring me. Charly: Im sorry bud. I just dont want anything bad to happen to you guys. I would never forgive myself. Robert: I know, but dont worry. Were fine. Im currently throwing glitter all over the J. Tillman 94 gym cause Dad told me to. Said it was your idea. Charly: I was being fucking sarcastic. Geez. Robert: Lol Robert: Hey, Aunt Faye is here and wants your new number. Charly: Awesome, give it to her! _________________________________________ April 3, 3:54p.m. (502)5552712: Hows my favorite niece. I noticed you werent here. Charly: Im blowing off your brother. <>Aunt Faye: Uh oh, what now? Charly: He wont let me be a normal teenager on spring break where I hang out with my only friend, my boyfriend, go to movies, and prom dress shopping. Aunt Faye: Idk what to say then. Youve been complaining about him to me since you got an email address five years ago or so. He doesnt change. But are you still coming up? I really want to see you and so do your grandparents. Theyve been harassing me J. Tillman 95 about you since I arrived here from Louisville. Charly: . Aunt Faye: ??? Charly: Ill come up Sunday for the party Aunt Faye: Thats the spirit. Charly: But Im sticking to you the whole time like glue. I dont want to mess with Dad. Too much. Aunt Faye: Dont worry, I wont let go of you. I would love it if the bf came along as well ) Charly: We shall see Aunt Faye: XD _________________________________________ April 3, 4:14p.m. Charly: Hey Justin. Its Charly. Got a new number. Asshole shut off the other one. Prince Charming: Why hello there my princess. Charly: I have a question. Prince Charming: Whats up? J. Tillman 96 Charly: I promised my aunt I would go to the party for my grandparents anniversary, so do you wanna come with me? Prince Charming: I thought you were avoiding the party like the black plague? Charly: I was, but I havent seen my aunt since my parents divorce seven years ago and the party is about my grandparents, not my dad. He can shove a stick up his ass for all I care. Prince Charming: You sure this is the right thing to do, not for your family but for you? Prince Charming: . Charly: . Charly: Yes Prince Charming: Alright, Ill drive. Charly: Thank you. I love you. Prince Charming: I love you too, always. Charly: :D _________________________________________ April 3, 7:28p.m. Dad: Is your sister finally coming up? I know youve been texting her. J. Tillman 97 Robert: Yes, she and Justin are on their way up. Dad: Whos Justin? Robert: Charlys boyfriend. Dad: Oh, that guy. Give me Charlys phone number, I need to get a hold of her. Robert: Im not allowed to do that. Dad: Why? Robert: Sisters orders. Dad: Im your father. Robert: And shes my sister. _________________________________________ April 3, 7:32p.m. Ed: Have you heard from Charly? You two text all the fucking time. Faye: Yeah. She and her bf are coming up tomorrow. Ed: The boyfriend wasnt invited. Faye: I went ahead and invited him. Ed: Why? We only planned on a hundred people or so Faye: So whats one more person? J. Tillman 98 Ed: A big deal. Faye: Hes not gonna eat everything. Ed: and what if he does? Faye: Then you dont have to worry about the left overs. What, no retort from that, baby brother? Ed: You always do things behind my back. Faye: Because I know you wont do things that need to be done. Ed: This is about Mom and Dad, not you. Faye: I know. I invited Justin because Mom wont get off my back about him and when she is finally going to meet him. Ed: I hate you. Faye: The hate is mutual baby brother. _________________________________________ April 3, 10:08p.m. Aunt Faye: Your dads an asshole. Charly: Tell me something I dont know. _________________________________________ April 4, 12:11p.m. Prince Charming: What was the whole point of this event again? J. Tillman 99 th Charly: My grandparents 50 wedding anniversary Prince Charming: So why has it become the Tasha and Ed show? Charly: Cause everything is about them Prince Charming: Have I ever told you I hate your stepsister? Charly: Join the club. _________________________________________ April 4, 4:47p.m. Dad: Guys, get off your phones. Its picture time Louie: Coming Robert: Im in the bathroom Charly: Im standing next to you, Dad. _________________________________________ April 4, 5:03p.m. Dad: I do not appreciate the behavior you have displayed here today. Today was about your grandparents and you did nothing but hang out on your phones and ignore the rest of the family and friends here to support them. Louie: I talked with grandma for most of the day! J. Tillman 100 Robert: Aunt Faye is pretty cool. Dad: Still, unappreciated behavior. Charly: whatever. Its better than the Tasha show. Dad: CHARLY! Charly: Come at me. Im 18, I technically dont have to be here. But I came for my grandparents and for Aunt Faye. I came because I love them. I didnt come for you or your model wife. You guys mean nothing to me. I hope you understand this is the last time Ill be seeing you. Dad: I dont appreciate your tone. Charly: I dont care. _________________________________________ April 4, 5:37p.m. Charly: It was great to see you again Aunt Faye Aunt Faye: You too Charly. Charly: Justin and I are heading home. Aunt Faye: Leaving me to calm down your father. Charly: If you want. Aunt Faye: what did you say to him. Charly: FWD: Come at me. Im 18, I technically J. Tillman 101 dont have to be here. But I came for my grandparents and for Aunt Faye. I came because I love them. I didnt come for you or your model wife. You guys mean nothing to me. I hope you understand this is the last time Ill be seeing you. Aunt Faye: Fair enough. _________________________________________ April 4, 5:33p.m. Faye: Youre an asshole. Ed: What did I do this time? Faye: You drove away your daughter. Ed: Shes just having a bad day, thats all. Faye: No. She has felt this way for years. Ed: And how would you know? Faye: theres this little thing called an email that you refuse to answer that I use to talk with Charly over these past few years youve been running around with shebitch. Ed: That is no way to talk about Tasha! Faye: Face it Ed. I dont like her, Charly doesnt like her, the twins dont like her, our parents dont like her. Hell, Charly told me that her son doesnt J. Tillman 102 even like her. You have effectively ruined your relationship with the rest of the family, and I hope you like the bed you made cause you gotta sleep in it now. _________________________________________ April 4, 7:23p.m. Charly: Thank you for coming up with me today. Prince Charming: Any time princess Charly: It was rough, but I hope you had fun. Prince Charming: Just think. You and I leave for IU in 5 months where we get to start over new. No more Ed, no more crazy stepmother and stepsister, just you and me taking on the world. How does that sound. Charly: Sounds like the happy ending Ive been dreaming of Prince Charming: <3 Charly: <3 <3 <3 J. Tillman 103 Appendix B: Welcome to Fallen Crest Outline Part 1 Initial Shock Age 10 Lives in Sunrise neighborhood with her father Edward Ed and mother Amanda, as well as her two twin brothers eightyearold Robert and Louis Louie Normal after school day where Charly gets her homework done early, Robert is sitting in front of the TV watching cartoons, and Louie is complaining about the food. Ed and Amanda enter the room and sit the kids down at the table Describe that for fall break, they will be going down to Louisville to be with their Aunt Faye, Eds only sibling Aunt Faye takes them to Six Flags, Newport Aquarium, and Churchill Downs over their fiveday break Kids return to Sunrise and Amanda has moved to Fallen Crest, but Ed is still at Sunrise. Amanda and Ed explain how they wont be living in the same house anymore, but this has nothing to do with the kids. They will see each parent equally, but they just live in two different houses J. Tillman 104 Louie is confused, as well as Robert, but Charly is visibly upset with tears, but doesnt say anything because she knows what is happening divorce. She thought that this might happen when she had picked up important looking mail but both of their names werent on the envelopes. In December, Amanda has completed the move with the kids to Fallen Crest, right before Christmas everything is now unpacked. (Fallen Crest is lowermiddle class area (older area in Fishers, but not cheapest/shittiest area in the Indianapolis area) Amanda tries her best to hide her depression in the holiday season, but the children do notice, especially Charly, who doesnt ask for an allowance and tries to help her mother out as best as she can Charly even offers to pitch in what little money she does have to buy a few presents for family. Amanda appreciates the move, but refuses, saying the money is for Charly to use. Charly buys her mother DVD player from Goodwill so they can watch movies again, like old times. On Christmas morning, the children have fun just hanging out with their mother, around the tree, and watching a fire crackle on the TV. Door bell rings and Ed shows up. J. Tillman 105 Charly answers the door with Amanda and the twins right behind her Ed invites himself into the house on Christmas morning, ignoring Amandas open glares about intruding uninvited. Gift exchange is made and Ed gets the kids new CD players with no CDs . Amanda gets the kids used books and video games that they will actually play and read. . After kids run off, Amanda and Ed get into an argument over the holiday season and who gets to be Santa . During the argument, the twins find out that Santa isnt real . Amanda kicks Ed out of the house. Ed doesnt even say goodbye Age 11 Summer Ed arrives to pick the kids up for their weekly Wednesday night custody session Tells the kids that they have a special event planned for the night something that never happens Arrive at Ben N Aries Golfing and Arcade on the north side of Indianapolis Fishers Ed Twins introduces a woman and her two children to Charly and the J. Tillman 106 Tasha Ian is the woman, who is just a friend, is the older of the two children (16) and completely uninterested in the whole event Shaunda is an annoying 9yearold miniTasha who is way too interested in the wins for Charlys comfort. They start off the night puttputting Charly hasnt said one word, just waved her hand in hello, but decides to play a round anyways, in silence Twins and Shaunda laugh and giggle while taking crap shots to shoot the golf balls into the various ponds so they can use the net to fish them out Ian is too cool to putput and continuously texts his football friends and girlfriend while sitting on a bench near the arcade entrance. . Charly ends up joining him to get away from Ed and Tasha Tasha weakly hits the balls, so Ed will wrap around her and guide her on how to putt Ed wont leave Tashas side Each attached at the hip and make googoo eyes at each other . Robert and Louie get into a small argument and Robert falls into the water hazard below he cant swim. J. Tillman 107 . Charly runs in and saves her brother from drowning while Ed and Tasha argue with the owner of the arcade about the safety of the place. . Owner throws in free pizza to calm everyone down. Once the kids are calmed down and mostly dried off, they return home and ignore the arcade and duckpin bowling alley. Pizza arrives and . there isnt enough pizza for everyone to eat Charly ends up making more food so that Robert doesnt go hungry with the lack of pizza. . When bedtime comes, the kids split up weirdly for sleeping arrangements and Charly sees Ed kissing Tasha, freaking out because there is no way that her parents could possibly get back together if she played her cards right. . Ian and Charly become acquainted better . But Robert fears that he will lose his sister to Ian like he lost his brother to Shaunda . Charly promises to never leave her baby brother. Age 12 . Summer Ed places the house in Sunrise for sale just under a year after introducing the kids to Tasha and her kids J. Tillman 108 Once Ed decides he is going to move in with Tasha, Charly runs to her room and throws things around. . Upset about the situation but doesnt really know how to handle her anger. Puts holes in the wall (imagining smashing Shaundas pig face in), destroys a desk, and breaks a lamp with a leg from the chair (getting a giant splinter in the palm of her hand). . Once her initial shock subsides and she notices someone trying to open her bedroom door, she escapes down the fire ladder (that Amanda was so insistent Charly had in her second story room) and runs across the street into the small wooded section to try and hide herself, escape from her life and pretend nothing ever happened. . Tries to wake up from a bad dream but cant not dreaming but in reality just wants a happy ending. Charly ends up finding a pit bull named Bubba, who leads her around the woods and protects her from the elements as she stays the night under a hollowed out tree. Bubba leads her to a house where a boy is sitting on the back porch, freaking out about his lost dog. . The boy, Justin, is overjoyed to see his dog, but is also taken aback by Charly, covered in mud and shivering in the morning cold. J. Tillman 109 Justin takes her into the house, where he lives with his mother, and takes care of the girl he found at the edge of the woods Justin runs to get his mom when he sees Charlys splintered hand. They wrap her in a blanket, clean her hands, call Amanda, and take Charly to the hospital to get her hands stitched up . Charly didnt feel any of it since her adrenaline was running, but also wanted to be brave in front of her friend. Amanda arrives at the hospital with the Twins and takes all three of the children home, thanking Justin and his parents for helping their family out. Winter Ed sells the house and moves, but not before fixing it up (finishes basement, paints house, puts up a fence) Never got around to fixing Charlys room Forces her to sleep on guest bed on the loft because of the glass still in her carpet Also easy to monitor her so she doesnt try to escape again like the night she cut her hands and fled to Justins house Wants to keep Charly safe J. Tillman 110 Ed moves in with Tasha in Columbus Trails neighborhood in Fort Wayne, Indiana. Charly gets a room barely bigger than a small walkin closet. Twins share a room with Ian Shaunda gets Ed her own room and Tasha get the master bedroom with attached bathroom The other 5 have to share the other half bath. Christmas Ed and Tasha buy several expensive items because the house was sold They Charly tell kids to not get used to it. gets shitty clothes that are too big and a used GameBoy Color Says Ian on the battery pack on the back Only received Barbie and puzzle games (hates Barbie and the puzzles are too simple) Wanted She Zelda, Mario, and Pokmon games doesnt complain (like she resolves to) because it is the holidays Yeah, she got shit, but the Twins got the goods and they are having a good time Doesnt Age 14 Summer want to ruin that for them J. Tillman 111 Charly has gotten used to living out of a suitcase and having no privacy When the Twins ignore Shaunda, she comes to mess with Charly Knows that she will get a reaction out of Charly Cries and gets Charly in trouble every weekend for not cooperating with Shaunda Most of the time, no one sees Charly She is usually studying and doing homework or reading to stay away from family Discovers old movie collection had been in the attic when Ian brings out boxes to the garage sale Tasha is putting on. Tries . to steal them back, but Tasha stops her. She forces Charly to sell her old movie collection at the next garage sale for three dollars per VHS . Charly is visibly upset and does her best not to cuss out customers . But lets Tasha know her feelings . Also wont let Charly read the newest and final Harry Potter book she had bought herself while selling her childhood away . All about pushing the sale on people, as if it was a retail store rather than a shitty garage sale Day three of the garage sale closes early so Tasha and Ed can go to the court house right before it closed to get married Charly is a bridesmaid J. Tillman 112 Shaunda is the maid Robert is the best man Louie is a Ian Tasha After of honor groomsman is a spectator with his girlfriend and Ed now become Mr. And Mrs. Stevens marriage, they have to go to Walmart before the dinner at Tasha mothers house to grab some last minute ingredients Could it get any more Redneck than this? We close the garage sale early to make it to the courthouse in time so they can get married, and now we have our reception at Walmart because we forgot something or other. Duhhuh. (BanjoKazooi Laugh) Fall Ed and Tasha move the kids to a new house in the richer area of town to Valley Forge neighborhood Each kid can have their own room, but the Twins decide to share a room, so they get the biggest room besides the Master Bedroom on the main floor of the house Have their Ian own TV and bathroom moved off to college back in August, shortly after Tasha and Ed got married He gets the spare bedroom/storage place in the basement when he comes home on breaks J. Tillman 113 Shaunda and Charly have rooms across from one another, also in the basement as well Shaunda has a Charly TV and a new desktop computer has a faulty TV and a semiworking old desktop computer with no desk to put it on or internet to connect it to so she could do her homework. Ed and Tasha say that it was too expensive to route one more cable into Charlys room Just want Charly to spend time with the family as a whole Not always secluded away in her room . Winter . Ed and Tasha want to talk to Charly since she is the oldest in the house now about responsibilities to the house and to the family . Charly isnt having it just fed up about being treated like a child . Ed and Charly go at it in a yelling match . Ed says he didnt have to move You could have said something! I could have stayed at the Sunrise house! . Charly: Oh, like you would have listened to a twelveyearold and a pair of nineyearolds about J. Tillman 114 where you should live. You want me to have responsibilities but you cant even take any blame yourself. The argument ends with Charly being sent to her room Her room is in the basement for a reason to escape, she had to go up the noisy stairs and get past her annoying stepsister Charly discovers she could fit through the half window in the basement and escapes that way Would walk around the neighborhood aimlessly, since she was out of the house. Only got away with it a few times before the police were called to escort her home neighbors worried that she was a stalker or potential predator The window became locked from the inside and outside No Part 2 the quiet years Age 15 Fall more escapes J. Tillman 115 This is the first time Charly requests to stay home for a weekend from Eds High school homecoming freshman year Justin, good friend who found her in the woods, asked her to go with him Ed refuses to let Charly go to some silly event such as Homecoming. Lawrence North High School is on Amandas weekend, so Charly asks Justin if he would like to come to that one instead Ed finds out and strongly encourages Amanda to refuse to let Charly go She would be irresponsibly since she was just like her mother and grandmother Amanda is incredibly offended and openly yelled at Ed on the phone in front of her children because she was so upset To keep the peace in the family, Charly asks Justin to only go out to a small dinner and then to the movies A first date Age 16 Late winter/early spring Ed pays for Charly to take drivers ed so she will be able to drive up to his house so he wont have to drive to pick them up J. Tillman 116 Wont get her a car though or phone thats Amandas job, since she is the custodial parent Charly aces the class and driving obviously with her excessive study habits and unnecessary nerves She ends up getting stranded at school when there is a miscommunication about pickup time after school She gets stuck at school from 4:30 7 after drivers class one day with no way of getting ahold of anyone . . Most students had gone home for the day Has to wait for swim practice parents to show up so she can borrow a phone to call Amanda to pick her up and let her know that she is okay Amanda forces Ed to get her a phone so something like this wont happen again Finally Without gets a phone a car, Charly cant go anywhere Ed gets a phone, but Amanda should get a car Amanda cant afford a car and Ed gets upset he still has to drive to pick up the kids. Part 3 The final blow Age 17 Spring J. Tillman 117 Getting ready for prom season, Charly blows off her dads request to spend her whole spring break with him and Tasha Chooses to Ed stay at friend Shelbys house calls several times along with Tasha, but Charly ignores them, choosing instead to watch stupid movies with Shelby until 3am instead of preparing for her grandparents wedding anniversary party Charly and Shelby spend the next day shopping Both find prom dresses at a resale boutique in Fishers (Havilahs) Lunch at Qdoba, Charly accidentally locks her keys in the car Charly calls Amanda on her phone to get the AAA info to unlock the car. Phone number has been turnedoff Eds way of getting back at Charly for not following instructions He didnt tell anyone, so this took everyone by surprise Shelby calls Amanda about car and Amanda is furious that Charly cant call anyone Tells them the number and the policy ID J. Tillman 118 Amanda calls Ed in a fit of rage but he wont change it until Charly has learned respect for her entire family. Amanda takes an extended lunch break, with her boss and boyfriend Atkins to keep the girls company until AAA can arrive two hours later. After AAA comes, Charly drops off her dress at home and after getting ahold of Aunt Faye, Eds only sister, Charly and Justin travel up to the party. Amanda is barely able to afford the switch, but wants Charly to be able to contact anyone she needs to whenever Atkins pays for the charge fees and Amanda is embarrassed and thankful Charly likes the two of them together and supports her mothers choices Ed and Charly dont speak until after the party the next day, after Justin has returned home because he had to work the next day after the party. Heavy Twins tension between the two know that Charly is going to be in serious trouble and want to protect her since she always protects them and they try to stay by her side, but they are sent to their room and told to not come out no matter what they hear. Charly smiles and says she is going to be fine J. Tillman 119 Your Mother is Poisoning YOU! argument with Tasha no respect for anyone, when they are trying their best to create a loving family Tasha is lying out her ass and Charly knows it, and refuses to take any of this harassment tonight. Charly tries to run out the back door but Ed catches her, drags her, and locks in her room with no phone for the rest of the week, six days After two days, the Twins are able to steal her phone back for her and present her with a new book to keep her entertained before having to go upstairs so they wont raise suspicion Charly contacts Amanda and Justin when she knows that Shaunda isnt in her room and tells them what has happened. Amanda and Atkins are at work, so they cant come get the kids until after Atkins gets out of his legal meeting with a high profile case member. Justin tries to borrow his moms car to come and get her and the twins out of that situation after but cant. Amanda, Atkins, and Justin ride up that afternoon to pick Charly and the Twins up Ed refuses to acknowledge Justin, threatens to punish the Twins for breaking the rules, but gets super enraged that Atkins showed up with Amanda. J. Tillman 120 Thought Charly he had left him in the courtroom pushes Ed to distract him from Atkins, whom she respects immensely Ed tries to push Charly back, but he pushes Justin instead as Justin is trying to get Charly out the door Justin is pushed into the railing and doubles over from stomach pains Charly helps Justin up and out the door Ed is angry drunk, which he has never been before to Charlys knowledge Atkins pulled his lawyer skills to get the kids out of the house temporarily until Ed cleans up for his next weekend with the kids in two weeks The drive home has Charly cuddled in Justins arms, making sure he is alright from being shoved into the banister Summer Charly spends her time bouncing between Amandas, Justins, and Eds Charly is harassed harshly at Eds but she ignores it for the most part Any back talking results in getting sent to her room with no computer and no ability to look at colleges or do homework, which she doesnt want to happen, so she continues to ignore the family to the best of her abilities J. Tillman 121 Charly is also prevented from getting a summer job because of Eds strict schedule that doesnt allow her to work weekends Summer remains calm and hot You could hear a pin drop in a usually noisy house that is Ed and Tashas School Begins/Fall Charly commits herself to her schoolwork and clubs and applying to colleges Wants to look good for college applications Justin joins her for almost all of the clubs when not working out for baseball, varsity team captain offseason workouts (plays shortstop) Amanda and Justin encourage her to go to college Ed doesnt want to pay for it Tasha and Ian dont think she is smart enough for it. Charly is forced to get preapproval from Ed and Tasha about weekends home Approve of academic weekend events, but not games or homecoming J. Tillman 122 On a weekend Charly is home at Amandas, she and Justin are able to attend homecoming and genuinely have a great time He gets her a promise ring and she freaks out and after her small panic attack, they get intimate for the first time Ed disapproves of the ring, but says Charly can just deal with the inevitable teenage pregnancy, just like family history She ignores this statement, but she knows Ed doesnt trust her Sad, thought that there could have been a little glimmer of hope, but she doesnt see any anymore Doesnt care about Ed or his family anymore, they dont care or trust her, she doesnt care or trust them back. Winter Same as in years past: Charly secludes herself in her room to try and create the least amount of conflict Ian and Shaunda praised most with Christmas gifts Twins happy and content with their gifts Charly gets leftovers Charly can only call Justin when either Tasha and Ed are in the room J. Tillman 123 Hides texting Concentrates mostly on homework and the beginning stages of AP studying Finishes applying for colleges A few scattering of wait listing and rejections lower Charlys confidence about being able to go to college Doesnt help with Ian and Tasha say, Told ya so. Age 18 Birthday/Late Ed Winter insists on taking Charly out to lunch on her birthday She Ed Ed, is at an academic conference all day is upset but settles on taking Charly out for dinner Tasha, Shaunda, the Twins, and Charly go to El Rodeo Justin Dinner not allowed to come is alright Charly gets $18 even for her birthday and a pin that says, Im 18, an adult. Respect! Has to put the button on even though she doesnt want to J. Tillman 124 Wears the giant sombrero and is super embarrassed about the whole birthday celebration in general Shaunda has a meltdown about not being the center of attention and makes herself known front and center Still acts like a baby, even though she is a high school freshman Becomes the Shaunda Charly show takes a back seat No energy after the conference and doesnt really care anymore. Charly thanks Ed and Tasha for dinner before she drives the Twins home in Amandas car that she borrowed for dinner Once home, there is Gramma, Shelby, Atkins, and Justin to celebrate and eat cake A few weeks later Ed, Amanda, and Charly all sit down in a neutral area out in the open neighborhood park (with Atkins and the twins still at the house) to discuss college options Ed and Amanda have opposite views and Charly agrees with Amanda setting Ed off Ed is still upset about being abandoned and replaced by Amanda and thinks Amanda has corrupted Charly against him J. Tillman 125 Tasha was right in saying that Amanda was poisoning Charly Charly confronts Ed to say that these decisions are her own and to quit beating up on Amanda and living in the past Ed storms off and says the can bury themselves in debt, its not his problem Spring Charly Early cracks down on studying for AP tests May: Ian graduates from Ohio State Charly She is in the middle of studying for tests that start next week pays attention to Ian graduate with the School of Business, but studies while other students graduate that she doesnt care about Ed thinks Charly isnt paying attention at all Ed emotionally harasses Charly and takes her study books, saying she shouldnt study because it is a waste of time and money Robert, Louie, and Shaunda follow Charly out into the hallway of the auditorium Louie tells Shaunda off and sends her back inside, crying to her mother. J. Tillman 126 Tasha returns to hallway with an evil determined look in her eyes and is going to tell Charly off once and for all, but Charly and the twins have left. Amanda let Charly borrow her car since she didnt have to work on the weekends Plus, Tasha Atkins can drive her runs outside to bring the children inside, but they are already on their way home Charly is ready for the AP tests, and takes them with relative ease From A month Receives . all the studying, Charly remains calm the whole test later, she finishes school with all As a larger scholarship from Indiana University, to study prelaw Thanks to Atkins Receives 4 and 5s on her AP exams in mid July, receiving enough credits to be a college sophomore End of the Summer Movein Day Charly and Justin are in the same dorm building Justin Ed is a computer science major shows up at Amanda house with some items for Charlys dorm room and asks if she needs help moving in He is denied J. Tillman 127 As Charly, the Twins, Amanda, Justin, and his parents get ready to head out, Ed looks rejected This shocks Charly and as much as she has grown to hate this man, she goes and talks to him. There is awkward silence between the two as they dont know what to say to each other Charly extends her hand and gives Ed a genuine smile Ed No shakes her hand and gives her a smile back words are said. Ed gives a content sigh, and Charly nods her head and gets in the car with Justin to head down to Bloomington to begin college, and her new life. J. Tillman 128 Character Age Chart This is a concise table with all of the characters ages displayed in an easy to read format Welcome to Fallen Crest Water Hazard Scars Cash for a Wedding Text Messaging Charly 10 11 12 14 18 Robert 7 8 9 11 15 Louie 7 8 9 11 15 Ian 14 15 16 18 22 Shaunda 7 8 9 11 15 Ed 35 36 37 39 43 Amanda 39 40 41 43 47 Tasha 30 31 32 34 38 Faye 41 42 43 45 49 Year 2003 2004 2005 2007 2011 J. Tillman 129 Character Descriptions Character Sheet adapted from Characters, Emotions, and Viewpoints by Nancy Kress. Each of the following character sheets were created for characters important to the outline but may or may not have been mentioned or developed in the stories themselves. MiniBio for Key Characters Name : Charlotte Charly Ann Stephens Age : 1018 Birthplace : Indianapolis, Indiana Marital Status : single Children and their ages : none General appearance (whatever seems useful) : Blonde, brown eyes, shorter torso/long legs, large chest and wide hips Living arrangements (i.e., lives with wife and three young children rents a ramshackle apartment alone has tent in nomadic tribe with three concubines) : Primarily with mother, visit dad and stepmom on weekends Occupation, including name of employer (if applicable) : Student in the Hamilton Southeastern School District Degree of skill at occupation (beginner, really competent, experienced but a bumbler, etc.) : Competent J. Tillman 130 Characters feelings about their occupation (love it, hate it, regards it as just a job, has mixed feelings, is actively searching for other employment): Pushes for best grades possible it allows for an escape from her family in hard times. Family background (whatever you think is important: ethnicity, siblings names, parents names, social status, clan affiliation, total repugnance toward everybody they knew before the age of 12) : Mother, Father, Twins Robert and Louie, Stepbrother Ian, stepsister Shaunda, stepmother Tasha Emotional MiniBio Name : Charly What three or four things does this person value most in life? (i.e., success, money, family, God, love, integrity, power, peace and quiet) School, friendship, family (specifically mom and twins) What three things do they fear most? Divorce, rejection, being alone/lost/abandoned What is this persons basic underlying attitude about life? (i.e. Things will usually turn out all right, or Theyre all out for themselves, or Its best to expect nothing because then you wont be disappointed, etc.) If you want something done you gotta do it yourself What does this person need to know about someone else in order to accept that others as all right and trustworthy? J. Tillman 131 Doing what they say, being a genuine person What would cause this person more pain than anything else possible? Mistrust/backstabbing, lost loyalty What would this person consider the most wonderful thing that could ever happen to them? Close family and friend motivation and empowerment What three words would they use to describe themselves, accurate or not? Studious, angry, shy How accurate is their selfdescription? Very accurate (but not always as shy as she thinks she is) J. Tillman 132 MiniBio for Key Characters Name : Robert Stephens Age : 715 Birthplace : Indianapolis, Indiana Marital Status : single Children and their ages : none General appearance (whatever seems useful) : Shaggy brown hair, smirky grin, playful brown eyes Living arrangements (i.e., lives with wife and three young children rents a ramshackle apartment alone has tent in nomadic tribe with three concubines) : Stays with Mom during the week, enjoys spending time at Dads almost every weekend, even when it isnt his weekend. Occupation, including name of employer (if applicable) : Student, Hamilton Southeastern School District Degree of skill at occupation (beginner, really competent, experienced but a bumbler, etc.) : More competent than brother Louie Characters feelings about their occupation (love it, hate it, regards it as just a job, has mixed feelings, is actively searching for other employment) : Its neither here nor there, just something he has to do. J. Tillman 133 Family background (whatever you think is important: ethnicity, siblings names, parents names, social status, clan affiliation, total repugnance toward everybody they knew before the age of 12) : Super attached to Charly and twin Louie, will stick to Charly over anyone. Emotional MiniBio Name : Robert What three or four things does this person value most in life? (i.e., success, money, family, God, love, integrity, power, peace and quiet) : Family, music, happiness, life What three things do they fear most? Lose, drowning, darkness What is this persons basic underlying attitude about life? (i.e. Things will usually turn out all right, or Theyre all out for themselves, or Its best to expect nothing because then you wont be disappointed, etc.) : The glass is half full, cause I drank the other half What does this person need to know about someone else in order to accept that others as all right and trustworthy? If Charly and/or Louie (mostly Charly) trust them, then he will too What would cause this person more pain than anything else possible? Seeing Charly get beaten up for protecting him and Louie What would this person consider the most wonderful thing that could ever happen to them? J. Tillman 134 The close family he is in What three words would they use to describe themselves, accurate or not? Mischievous, happygolucky, protector How accurate is their selfdescription? Pretty good J. Tillman 135 MiniBio for Key Characters Name : Louie Louie Stephens Age : 715 Birthplace : Indianapolis, IN Marital Status : single Children and their ages : none General appearance (whatever seems useful) : Blonde hair (Charly), blue eyes (Amanda), rounded ears (Robert), thin lips (Ed) Living arrangements (i.e., lives with wife and three young children rents a ramshackle apartment alone has tent in nomadic tribe with three concubines) : Mom primarily (with Charly and Robert), Dad and stepmom on weekends Occupation, including name of employer (if applicable) : Student, Hamilton Southeastern School District Degree of skill at occupation (beginner, really competent, experienced but a bumbler, etc.) : Moderate learner Characters feelings about their occupation (love it, hate it, regards it as just a job, has mixed feelings, is actively searching for other employment) : Not interested, just wants to leave as soon as possible J. Tillman 136 Family background (whatever you think is important: ethnicity, siblings names, parents names, social status, clan affiliation, total repugnance toward everybody they knew before the age of 12) : Attached to Ed over Amanda (Dad over Mom), Roberts best friend but finds his younger twin to be a bit of a nuisance. Emotional MiniBio Name : Louie What three or four things does this person value most in life? (i.e., success, money, family, God, love, integrity, power, peace and quiet) Peace and quiet, intelligence, family What three things do they fear most? Loneliness, lost, death What is this persons basic underlying attitude about life? (i.e. Things will usually turn out all right, or Theyre all out for themselves, or Its best to expect nothing because then you wont be disappointed, etc.) The glass has water in it What does this person need to know about someone else in order to accept that others as all right and trustworthy? Spends time analyzing behavior and asks several questions for similar answers to his What would cause this person more pain than anything else possible? Losing his twin Robert J. Tillman 137 What would this person consider the most wonderful thing that could ever happen to them? Hasnt happened yet What three words would they use to describe themselves, accurate or not? Smart, aloof, protective How accurate is their selfdescription? Pretty good J. Tillman 138 MiniBio for Key Characters Name : Amanda Stephens Age : 3947 Birthplace : Indianapolis, Indiana Marital Status : divorced Children and their ages : Charly 1018, Robert and Louie 715 General appearance (whatever seems useful) : Same as daughter Charly, slightly taller and more aged/wrinkled face from stress (makes her look older than she actually is) Living arrangements (i.e., lives with wife and three young children rents a ramshackle apartment alone has tent in nomadic tribe with three concubines) : Small threebedroom house with children in a bit of the rundown part of Fishers to keep the kids in the same school district and not disturb their lives more than she and her exhusband already had Occupation, including name of employer (if applicable) : Receptionist at Atkins and Brown paralegal office Degree of skill at occupation (beginner, really competent, experienced but a bumbler, etc.) : Extremely competent want to become a paralegal but has no money (all of it goes to keeping her kids happy, healthy, and safe) J. Tillman 139 Characters feelings about their occupation (love it, hate it, regards it as just a job, has mixed feelings, is actively searching for other employment) : Loves it paralegal Atkins helped with divorce and gave her a job (eventually becoming her boyfriend/lover) Family background (whatever you think is important: ethnicity, siblings names, parents names, social status, clan affiliation, total repugnance toward everybody they knew before the age of 12) : Father died young (of a heart attack), mother even younger raised by grandparents when mother was working to put food on the table Emotional MiniBio Name : Amanda What three or four things does this person value most in life? (i.e., success, money, family, God, love, integrity, power, peace and quiet) Family, trust, love, honor What three things do they fear most? Loss/rejection, harm to loved ones, letting kids go to their fathers and having something happen (paranoia) What is this persons basic underlying attitude about life? (i.e. Things will usually turn out all right, or Theyre all out for themselves, or Its best to expect nothing because then you wont be disappointed, etc.) Family is the most important J. Tillman 140 What does this person need to know about someone else in order to accept that others as all right and trustworthy? Honesty, willingness to help in the face of need What would cause this person more pain than anything else possible? Dishonesty and loss of honor What would this person consider the most wonderful thing that could ever happen to them? Having happy, healthy kids who experience no pain from her ex What three words would they use to describe themselves, accurate or not? Determined, strong, protective (like a mama bear) How accurate is their selfdescription? Incredibly accurate J. Tillman 141 MiniBio for Key Characters Name : Edward Ed Stephens Age : 3543 Birthplace : Fort Wayne, Indiana Marital Status : divorced, remarried Children and their ages : Charly 1018, Robert and Louie 715 General appearance (whatever seems useful) : Short brown hair, scruffy mustache/beard, beer belly, shifty/squinted eyes, wrinkled forehead, thin lips Living arrangements (i.e., lives with wife and three young children rents a ramshackle apartment alone has tent in nomadic tribe with three concubines) : Lives with second wife Tasha and stepdaughter Shaunda with visits from stepson and own children Occupation, including name of employer (if applicable) : Computer programmer at Ace Fixers Degree of skill at occupation (beginner, really competent, experienced but a bumbler, etc.) : Experienced, has learned from past work in the city when he lived with Amanda Characters feelings about their occupation (love it, hate it, regards it as just a job, has mixed feelings, is actively searching for other employment) : J. Tillman 142 Mixed loves computers, just a job but wants to stay because he is committed to making more than enough money for his family Family background (whatever you think is important: ethnicity, siblings names, parents names, social status, clan affiliation, total repugnance toward everybody they knew before the age of 12 ): Small family. Stay at home Mom, community active dad with Associates Degree from small Christian college. Sister Faye left for out of state college and never came back. Now has a sort of distrust for his sister for leaving the family. Emotional MiniBio Name : Ed What three or four things does this person value most in life? (i.e., success, money, family, God, love, integrity, power, peace and quiet) Money, forgiveness, consistency What three things do they fear most? Parental death (wouldnt have anyone to truly trust anymore), bankruptcy, unforgiveness What is this persons basic underlying attitude about life? (i.e. Things will usually turn out all right, or Theyre all out for themselves, or Its best to expect nothing because then you wont be disappointed, etc.) Get get whats coming to you J. Tillman 143 What does this person need to know about someone else in order to accept that others as all right and trustworthy? Same ideas, allowing forgiveness What would cause this person more pain than anything else possible? Not receiving forgiveness for what he claims isnt a big deal What would this person consider the most wonderful thing that could ever happen to them? Marrying Tasha and having the seemingly perfect American life What three words would they use to describe themselves, accurate or not? Efficient, understanding, money conscious How accurate is their selfdescription? Not good. He doesnt understand when peoples perspectives are different than his own and want to argue against him J. Tillman 144 MiniBio for Key Characters Name : Tasha CallowStephens Age : 3038 Birthplace : Fort Wayne, Indiana Marital Status : divorced, remarried Children and their ages : adopted son Ian 1422, biological daughter Shaunda 715 General appearance (whatever seems useful) : Short jetblack hair that she will dye random colors that dont always match her skin tone, super curvy, skinny, sharp nose Living arrangements (i.e., lives with wife and three young children rents a ramshackle apartment alone has tent in nomadic tribe with three concubines) : With Ed and Shaunda, occasionally with Ian, Charly, and the twins Occupation, including name of employer (if applicable) : Local model, Pristine Image (how Ed reconnected with her Degree of skill at occupation (beginner, really competent, experienced but a bumbler, etc.) : Decent (not appealing model face but great body) Characters feelings about their occupation (love it, hate it, regards it as just a job, has mixed feelings, is actively searching for other employment) : Just a job, but not educated to do anything else besides watch TV and exercise excessively J. Tillman 145 Family background (whatever you think is important: ethnicity, siblings names, parents names, social status, clan affiliation, total repugnance toward everybody they knew before the age of 12) : Rich area, spoiled youngest child of five, the perfect image of the American Family Emotional MiniBio Name : Tasha What three or four things does this person value most in life? (i.e., success, money, family, God, love, integrity, power, peace and quiet) Beauty, freedom, cooperation with her ideas What three things do they fear most? Ugliness, rejection, bankruptcy What is this persons basic underlying attitude about life? (i.e. Things will usually turn out all right, or Theyre all out for themselves, or Its best to expect nothing because then you wont be disappointed, etc.) Beauty is all a woman needs What does this person need to know about someone else in order to accept that others as all right and trustworthy? If they praise her beauty What would cause this person more pain than anything else possible? Not being an acceptable model J. Tillman 146 What would this person consider the most wonderful thing that could ever happen to them? Getting back together with her college sweetheart Ed What three words would they use to describe themselves, accurate or not? Beautiful, perfect, cunning/smart How accurate is their selfdescription? Eh, accurate but not for the right reasons. J. Tillman 147 MiniBio for Key Characters Name : Shaunda Callow Age : 715 Birthplace : Auburn, Indiana Marital Status : single Children and their ages : none General appearance (whatever seems useful) : Curly brownishblack hair, mothers brown eyes, short, small waist (almost an exact replica of her mother Tasha) Living arrangements (i.e., lives with wife and three young children rents a ramshackle apartment alone has tent in nomadic tribe with three concubines) : Lives with Ed, Tasha, Ian and sometimes her stepsiblings (but not with her father. She rarely visits him) Occupation, including name of employer (if applicable) : Student, Dekalb County School District Degree of skill at occupation (beginner, really competent, experienced but a bumbler, etc.) : Not really good, more interested in a potential modelling career like her mother Characters feelings about their occupation (love it, hate it, regards it as just a job, has mixed feelings, is actively searching for other employment) : Just school. Would like to follow in her moms footsteps J. Tillman 148 Family background (whatever you think is important: ethnicity, siblings names, parents names, social status, clan affiliation, total repugnance toward everybody they knew before the age of 12) : Super close to Tasha, hardly sees her father, thinks of Ed as a father, completely ignores Ian, super interested in the twins (especially Louie). Jealous of Charlygets her into trouble all the time so she can be the center of attention for the family Emotional MiniBio Name : Shaunda What three or four things does this person value most in life? (i.e., success, money, family, God, love, integrity, power, peace and quiet) Tasha, success, health, beauty What three things do they fear most? Unsuccessful, being fat/ugly, losing Tasha What is this persons basic underlying attitude about life? (i.e. Things will usually turn out all right, or Theyre all out for themselves, or Its best to expect nothing because then you wont be disappointed, etc.) Beauty is the way to a successful life What does this person need to know about someone else in order to accept that others as all right and trustworthy? If Tasha trusts them, she does too What would cause this person more pain than anything else possible? J. Tillman 149 Losing/being rejected by Tasha What would this person consider the most wonderful thing that could ever happen to them? When she decided to follow in Tashas footsteps What three words would they use to describe themselves, accurate or not? Beautiful, kind, smart How accurate is their selfdescription? Not very accurate. Can be bitchy and dumb and definitely not kind. J. Tillman 150 MiniBio for Key Characters Name : Ian Callow Age : 1422 Birthplace : Auburn, Indiana Marital Status : single Children and their ages : none General appearance (whatever seems useful) : Short brown hair, broad chest, muscular football, a bit on the short side Living arrangements (i.e., lives with wife and three young children rents a ramshackle apartment alone has tent in nomadic tribe with three concubines) : Stays with his father most of the time, but visits stepmother Tasha and her husband Ed from time to time, mostly to check up on Charly and make sure she is handling the craziness well. Occupation, including name of employer (if applicable) : Student, Dekalb County School District Ohio State University Degree of skill at occupation (beginner, really competent, experienced but a bumbler, etc.) : Somewhat competent, but lazy and unmotivated to care more and get above the bare minimum for football requirements Characters feelings about their occupation (love it, hate it, regards it as just a job, has mixed feelings, is actively searching for other employment) : J. Tillman 151 Doing it to be first college graduate on the Callow side of the family Family background (whatever you think is important: ethnicity, siblings names, parents names, social status, clan affiliation, total repugnance toward everybody they knew before the age of 12) : Lives with Dad, sees Mom weekly, regular sport practices, in his own bubble of friends and acquaintances. Emotional MiniBio Name : Ian What three or four things does this person value most in life? (i.e., success, money, family, God, love, integrity, power, peace and quiet) Strength, freedom, friendship What three things do they fear most? Weakness, being alone, inability to play sports What is this persons basic underlying attitude about life? (i.e. Things will usually turn out all right, or Theyre all out for themselves, or Its best to expect nothing because then you wont be disappointed, etc.) Sports are life What does this person need to know about someone else in order to accept that others as all right and trustworthy? Nothing, he trusts anyone cause he really doesnt care. If they mess up, they mess up and he moves on with his life What would cause this person more pain than anything else possible? J. Tillman 152 Death What would this person consider the most wonderful thing that could ever happen to them? Going to college for football What three words would they use to describe themselves, accurate or not? Strong, handsome, intelligent How accurate is their selfdescription? Decent definitely not as smart as he thinks he is J. Tillman 153 MiniBio for Key Characters Name : Justin Fincher Age : 1119 Birthplace : Kokomo, Indiana Marital Status : single Children and their ages : none General appearance (whatever seems useful) : Small frame, lean and muscular, blue eyes, gentle smile, constantly winking, shaggy brown hair Living arrangements (i.e., lives with wife and three young children rents a ramshackle apartment alone has tent in nomadic tribe with three concubines) : Lives with single mother and pit bull named Bubba in a quaint ranch house across the road from Eds house (Charlys dad) Occupation, including name of employer (if applicable) : Student, Hamilton Southeastern School district Degree of skill at occupation (beginner, really competent, experienced but a bumbler, etc.) : Moderate learner (knows facts, is just a lazy procrastinator) Characters feelings about their occupation (love it, hate it, regards it as just a job, has mixed feelings, is actively searching for other employment) : Enjoyable J. Tillman 154 Family background (whatever you think is important: ethnicity, siblings names, parents names, social status, clan affiliation, total repugnance toward everybody they knew before the age of 12) : Good family, no problems (other than Dad when he was little, but nothing recently) Emotional MiniBio Name : Justin What three or four things does this person value most in life? (i.e., success, money, family, God, love, integrity, power, peace and quiet) Friends, family, sports, life What three things do they fear most? Loneliness, spiders, not being able to help others What is this persons basic underlying attitude about life? (i.e. Things will usually turn out all right, or Theyre all out for themselves, or Its best to expect nothing because then you wont be disappointed, etc.) I got this, maybe? What does this person need to know about someone else in order to accept that others as all right and trustworthy? Being honest and truthful What would cause this person more pain than anything else possible? Losing anyone while away/being unable to help them J. Tillman 155 What would this person consider the most wonderful thing that could ever happen to them? Charly What three words would they use to describe themselves, accurate or not? Friendly, sporty, huggable How accurate is their selfdescription? Very accurate J. Tillman 156 MiniBio for Key Characters Name : Daniel Atkins Age : 3845 Birthplace : St. Louis, Missouri Marital Status : single Children and their ages : none General appearance (whatever seems useful) : Very well put together, slicked back brown hair, clean shaven, tall, small shoulders and large feet Living arrangements (i.e., lives with wife and three young children rents a ramshackle apartment alone has tent in nomadic tribe with three concubines) : Lives in a 2bedroom apartment by himself, until Amanda (Charly and the twins mother) asks him to move in with the family. Occupation, including name of employer (if applicable) : Paralegal Atkins and Brown law firm (hes a coowner/partner) Degree of skill at occupation (beginner, really competent, experienced but a bumbler, etc.) : Extremely competent Characters feelings about their occupation (love it, hate it, regards it as just a job, has mixed feelings, is actively searching for other employment) : Absolutely loves it J. Tillman 157 Family background (whatever you think is important: ethnicity, siblings names, parents names, social status, clan affiliation, total repugnance toward everybody they knew before the age of 12) : Family moved a lot, now all in different states. Pushed to be a lawyer by his own father (who dropped out of law school), but never found anyone he wanted to settle down with until Amanda and her family, after he defended her in court when she was getting a divorce from her exhusband Ed and offered her a job as a receptionist at his law firm. Emotional MiniBio Name : Atkins What three or four things does this person value most in life? (i.e., success, money, family, God, love, integrity, power, peace and quiet) Smarts, loyalty, consistency, courage What three things do they fear most? Death, never finding a companion, water What is this persons basic underlying attitude about life? (i.e. Things will usually turn out all right, or Theyre all out for themselves, or Its best to expect nothing because then you wont be disappointed, etc.) You can win at almost anything with wit, determination, and skill What does this person need to know about someone else in order to accept that others as all right and trustworthy? Telling the truth J. Tillman 158 What would cause this person more pain than anything else possible? Losing practice/law firm and/or Amanda and her kids What would this person consider the most wonderful thing that could ever happen to them? Amanda and her kids plus his partner Connor Brown What three words would they use to describe themselves, accurate or not? Witty, honest, friendly How accurate is their selfdescription? Alright. Hes more shy than witty J. Tillman 159 Annotated Bibliography Alexie, Sherman. The Lone Ranger and Tonto Fist Fight in Heaven . 20th Anniversary ed. New York: HarperPerennial, 1994. Print. For this collection of short stories, the author has connected the stories together with the same collection of characters at different ages, levels of maturity, and perspectives. Since Sherman Alexie is a Native American who grew up on the Spokane Reservation in Washington state, his characters are based on people he either knew or situations he witnessed or was a part of. This brings an interesting connection to all of the stories while also having each story stand alone each with a distinct beginning, middle, and end. This has been the best collection of stories I have read for my senior English Capstone project and for my honors collection of short stories because of the interconnected stories and how the characters change over time. One part that really stood out to me was the timeline. Not all of the stories were written in chronological order. There is Vincent, the main character through all of the stories, describing a story of his parents and how they had drunk parties to entertain the neighborhood while Vincent was downstairs, followed by another story that describes Vincent going down to Arizona to pick up the ashes of his father that were found in his trailer years after he left his mother, then followed by a third story about a different character hanging out with Vincent back on the reservation to keep him preoccupied while his parents fought and threatened divorce. With the jumbled timeline, it gives the feel that all of the stories are just that, stories. They don't have to be in any order, and I had never thought about that before. J. Tillman 160 Since my project is both for my English Capstone and my honors project, this book has been the best for describing how things can connect together, while not necessarily being in order. This can be a great advantage I can use when drafting the stories as well as deciding their order for the final project. With an interconnected collection of short stories, I had always figured that the stories had to be plotted out in chronological order, since I mainly read novels, and they are plotted out in chronological order. But since these are stand alone stories, I can do whatever I want with each story, from any age, time, and perspective, and create a unique and compelling series of short stories that would not have come about in a novel or linear collection of short stories. This will definitely be an aspect that I bring to my own writing and I will continue to work with in the future. J. Tillman 161 Anderson, Sherwood, with an introduction by Ted Olson. Winesburg, Ohio . New York: Barnes & Noble, Inc., 2010. Print. This book seems to be one of the best collections of interconnected short stories on the market today. Since reading it, it has helped with my writing tremendously. Not just in the way that shows writers how to write a good short story, but how to connect everything together. Sometimes, while writing my own collection, it was hard to make the stories stand by themselves but also be connected to one another, one of the goals of this project. Sherwood Anderson wrote this collection almost one hundred years ago and it still holds up as a formidable collection of stories. Not only is the connection there, but the language and the emotion is present as well. One of my favorite lines is she was like one who has discovered the sweetness of the twisted apples, she could not get her mind fixed again upon the round perfect fruit that is eaten in the city apartments (12). This line, from the story called Paper Pills describes a character who moved to this rural town after having lived in a major city for a while, but returned to her family. Once back, she decided to stay because there are things in small towns that you cannot get anywhere else, and those little things make the best gifts to each person who comes to a small town. It is these intricacies of the stories, and also the central location that make this collection seem incredibly modern and relevant today. The characters are distinguished and express themselves on the page in their own way, which is something I have been trying to do, but do not always seem to make it all the way, or have the characters as unique as they need to be. Anderson has created some great characters and I am going to J. Tillman 162 emulate that in my own writing so my stories are firmly based in reality and can last for long periods of time. J. Tillman 163 Bernheimer, Kate. Mirror, Mirror on the Wall: Women Writers Explore Their Favorite Fairy Tales . New York: Anchor Books, 1998. Print. This book came to me later in this project than previous books that were predetermined before I started writing. For one of my stories I wanted to use a fairy tale motif because the main character wanted to escape what she called her Evil Queen, her fathers girlfriend, soon to be wife. Because I wanted this motif, I needed to do more research on how people write about fairy tales as well as how fairy tales have effected writers from childhood to adulthood. I, myself, have taken a liking to fairy tales since I can remember my mother reading me some watered down versions of Grimm Fairy Tales before going to bed as a little girl. Because of this, I thought that it would be best to add in fairy tales to my own writings. Of all of the women writers in this book, each had a different take on what fairy tales meant to them, whether it be from reading them as a child to being a big influence on their own writings today. Getting several different perspectives on how fairy tales influenced writers that I look up to is fascinating. And it wasnt just fairy tales in general, some writers were influenced by specific fairy tales from Snow White and Rapunzel to 1001 Arabian Nights . One writer, Vivian Gornick, wrote an analysis essay over The Princess and the Pea and how our society nowadays is obsessed with finding the right man, but putting almost no effort into the act of looking and wanting to be swept off of our feet by a knight in shining armor or Prince Charming. Another writer, Linda Gray Sexton, daughter of the late poet Anne Sexton, who wrote an entire poetry collection on fairy tales, remembers what it was like to grow up with her mother, who was always J. Tillman 164 reciting fairy tales as well as what it means for her as a writer trying to define herself as a different person from her mother even though they write about similar topics. With these different interpretations of fairy tales, writing my own story with fairy tale motifs is going to be a unique experience as well as one that isnt so uncommon, but each retelling of each fairy tale is individual. While the story Scars ended up not using the fairy tale motifs I had done the research for, it still helped while writing and editing and going through different phases of editing and versions of the story. J. Tillman 165 Burroway, Janet, Elizabeth StuckeyFrench, and Ned StuckeyFrench. Writing Fiction: A Guide to Narrative Craft . Boston: Longman, 2011. Print. Within this most recent edition of Janet Burroway's craft book, the author lays out many different ideas about how to write narratively, but also how to think about how things work within the English language and its craft. English can be difficult to be in control of when it comes to writing, especially for beginners or nonnative speakers, but it can also be a wonderful skill to have when writing becomes a more natural thing for people to use and understand. Characters can be developed in the English language to become unique and compelling figures who can can change over the course of the story or novel, whichever is being written at the time. For short stories, Burroway says it's a bit more difficult to express lots of change in a short amount of time, but it is not impossible. That is the best advice the author can give me at this point in time, since my writing style is more typical of that from a novel, which I describe details that may seem unnecessary in a short story, but are almost always essential to a novel, from the daily lives of a character before a change, as well as the usual banter of conversations that happen over the course of any day, no matter the situation. Novels seem to be pushed forward by dialogue, which is not necessarily a bad thing, as it allows the readers to further understand the characters and connect with them on a more personal level and create a bond between reality and fiction. The author has laid down several tips for slimming down the text and word count for short stories as well as how to flesh short stories out to make them into longer stories J. Tillman 166 or even a novel, which will definitely come in handy as I continue to work on these stories for my honors project as well as any future writings I do after graduation. J. Tillman 167 Campbell, Bonnie Jo. Mothers, Tell Your Daughters . Brooklyn, NY: Maribeth Batcha, 2015, Print. Besides from loving this collection of short stories for their narrative voice and characters, the relationships is that I seemed to pick up on most from this collection. As the newest collection of published short stories by Bonnie Jo Campbell, many of the stories relate around a main female character interacting with others around her. Sometimes the character of the story is interacting with a boyfriend, who is not the greatest, a brother or other sibling, or a mother. In the title story, the main character is an elderly mother, who has lost the ability to speak to her daughter, and telling her all the stories she wants to tell her but cannot because she is slowly losing her mind. This mother explains that her husband, her daughters father, was not always the best, but they did with what they had and how they continued to survive long after he had left the family picture. This story alone is incredible for understanding how mothers interact with their daughters, and sheds light on how my own mother and I interact and how the mother in my short story collection should interact with her children, and how each of them will have a different relationship with each other, like people do in real life. There is also the interaction that the characters have in this collection of short stories I read. The relationships seemed genuine, not something contrived inside someone elses head. This type of relationship I have struggled to create in my own writing, but by seeing how someone else has created these relationships, I am able to take my own twist on the relationships and make them my own and interesting characters with real centers J. Tillman 168 of conflict and internal struggle that make characters whole instead of just words on a page. That is what I strive for in my own writing. J. Tillman 169 Daz, Junot. This is How You Lose Her. New York: Riverhead, 2012. Print This book has quickly become one of my favorites that I have read for this project. I had read one story out of another book before hand for my Fiction Workshop class, but to read Mr. Dazs newest collection of stories was a great privilege and I was excited that it could be worked into this project. In this collection, most of the stories might come across as similar or the same with different character names. And for some of the stories, like Nilda and The Sun, the Moon, and the Stars, I can see why critics have said that about this collection. In Nilda, for example, the story is about a boy who says he is in love with this girl, Nilda. He wants his whole life to revolve around this girl, who is the high school slut, and how he would treat her right and not act like all of the other guys who just want to sleep with her and brag that they did so. But, the narrator ends up sleeping with her and finds nothing appealing about her, and then turns around and brags that he slept with her and that she wasnt anything special, a waste of his time. That is cruel, but that is the life of a high schooler. There were students in my own high school who had the same nicknames and people said the same things about them. Looking back, it is horrible, but I laughed at them because I was better than the girls who only slept around to gain a name for themselves, such as Nilda in the story. The story did not seem to stick out, at first, to me. It was just another story that I read for this project and I almost skimmed over it because I had so many more books to read and there were other, better, stories in this collection I wanted to read and was excited to read (The Cheaters Guide to Love for example). But the end of Nilda J. Tillman 170 stabbed me in the stomach. It is years in the future and the narrator sees Nilda at the laundromat, children hanging off of her. The narrator comes to an epiphany, one that I was not expecting from the character. The narrator wonders what would have happened if he had not said those things about Nilda to his classmates and if they could have had a better life than the ones they were currently living. On the flip side, he wonders if he had stayed with Nilda, would they still have ended up like this, in a laundromat, children running everywhere, and no money because they chose to raise a family instead of getting out of their rundown town and making a new life for themselves. This sort of conflict is one that is incredible for me and why I will continue to read Junot Daz long after this project is over. That punch in the stomach at the end is a feeling that I love to feel when I am reading a story and one that I want to be able to write and make my own readers feel. I know how it was done in this story and I will try my hardest to add it into my writing, because that is an important feeling to writing that makes stories stand out in readers minds. J. Tillman 171 Francke, Linda Bird. Growing Up Divorced . New York: Linden/Simon & Schuster, 1983. Print. This novel seemed to be more of a psychology book meant to be read by parents than a story to be told. That does not make it a bad thing, it actually helped immensely with the stories I wrote. Since it did have the psychological background for understand divorce and how children in the late 1970s to the early 1980s grew up interpreting their parents divorce and how that can change with age as either the child grows older as the divorce evolves, or the child is older when the divorce takes place. Because of these different reactions, I understood how my own characters would evolve as well as understanding what I myself went through almost 12 years ago with my own parents divorce that inspired this collection. With this book, it was easy to see how things transcribed from one year to the next as well as where things can go differently from me and my characters. These stories are not supposed to be memoirs for myself, but stories about characters who have gone through an experience I have myself, and how things can go differently based on each individual in the story or household. Seeing these changes that people can go through in shared experience is helpful for how to structure my characters away from myself and my family members who some of the characters are based on so that I had an idea of where I wanted them to go in the story itself. With the help of this book, I can now see where my characters are going in their future developments of the stories and how to make the changes seem real and understandable for the character progression as well as for the readers and myself when I am writing the story. J. Tillman 172 List, Julie Autumn. The Day the Loving Stopped: A Daughters View of Her Parents Divorce. New York: Seaview, 1980. Print. Within this nonfiction story, a lot of details are described so readers can fully understand what is going on in the situation. Since this is a first hand account of what the author remembers happening to her and her family after her parents divorce, it was eye opening to read what others have gone through that was either similar or different from me based on who we are as people as well as the time difference. The authors parents got divorced in the 1970s, when noexcuse divorce became legal across the United States meaning that there didnt need to be proof of a bad relationship or cheating to get a divorce, you could get one because you and your partner wanted one. For me, my parents divorced after the turn of the twentyfirst century, so there were changes in society as well as how situations such as divorce were handled in the household and in court. Even though this book was incredibly helpful as a basis for what I want to do for the future of this project, there was a sort of disconnect to the story. Yes, it is about children and their view on their parents divorce, but that time difference of almost fifty years is a big challenge to overcome. With that time difference, readers cannot quite connect with the narrator. The books starts off with a college prom where families are invited to celebrate with their student before they graduate the next day. For me, the only proms I ever went to were in high school, and I definitely did not want my mother to attend that. Because of this disconnect and lack of literature, I am more motivated to publish these stories and make them as best they can be so that young people can read something modern that makes sense to them without the strange social constructs that J. Tillman 173 might be found in older literature that came out around the time of this book when the noexcuse divorce was becoming popular and divorce was more common. J. Tillman 174 Martone, Michael. Not Normal, Illinois: Peculiar Fictions from the Flyover . Bloomington: Quarry /Indiana UP, 2009. Print. While this book came with high praise and expectations, it was a bit of a let down in the sense of storytelling. The premise of the book is a collection of weird and "out there" stories written by people who grew up or are currently living in the Midwest, such as myself here at the University of Indianapolis. The stories were weird, and weird is never bad. I like weird. But the wrong kind of weirdness, for me, came from either the subject or the craft of the writing. The Midwest is not particularly interesting in my opinion, after living here for the past 22 years, but the authors tried to make it so, which is something I appreciate. Not everything in life can be extraordinary when you live in such a place as the corn fields of Indiana. Some of the situations written came across as normal, like the Boy Scouts in their secret hideout after school, but what the whole story was interested in was pretty strange. The Boy Scouts in this particular story, wanted to be on the lookout for communist missiles that could potentially hit their area of southern Illinois during the early era of the Cold War. That is almost impossible it is not going to happen, but these characters want to be on the lookout, "just in case." While stories like this can be appreciated, it is not really something I can use for my own personal work since my project is based in modern times and deals with current situations that affect half of the American population under the age of 18. This is not to say that this collection of stories was a waste of time. It showed me an extreme other end of how stories can be set in J. Tillman 175 reality, but all of this crazy stuff can occur or that they can be totally out there in the sense of story, but still work wonderfully for craft. J. Tillman 176 Munro, Alice. Dear Life . New York: Vintage International, 2012. Print. Many say that Alice Munro is one of the best short story writers of the twentieth and twentyfirst centuries. And to be honest, I have to agree with them. Munro takes very small aspects of life and makes them into intricate stories that either come full circle by the conclusion, or they are a series of unorganized flashbacks that make sense by the end of the story that you would have never understood if you tried to make the story linear. This technique is what I pulled on heavily for my opening story, titled Welcome to Fallen Crest. With the series of flashbacks, it would be hard to tell the story in linear order because each of the scenes is triggered by something in the present, and the way the human brain recalls memories is not linear. Munro captures this thought process in her stories and makes things absolutely beautiful when she tells them. One story in particular stuck out to me, because it was told from the perspective of a young daughter traveling across the country by train, while her mother is off with someone else and trying to get over her own problems. The perspective jumps between the two narrators seamlessly and tell the story from both sides while also bringing an outside perspective on the characters and their actions with one another as well as those with them on the train. The story does not seem that interesting on the outside, but with the thoughts of the characters being the main drive of the story, readers learn about the characters that no one else would know, not even the other characters in the story, all while they are on a train to get somewhere else. Since I have finished this collection, it has opened my eyes to a whole style of writing that I would not have known about and could use for my writing. Because of this, J. Tillman 177 my writing has improved and my knowledge of writing has expanded along with the different ways of telling a story. J. Tillman 178 OConnor, Flannery, and Frederick Asals. A Good Man is Hard to Find. New Brunswick: Rutgers UP, 1993. Print. Flannery OConnor has always been one of my favorite short story authors for her quirkiness and spontaneity with how the story unfolds. Most situations start off as normal, like a family going on vacation in A Good Man is Hard to Find or a mother and daughter starting their day on the farm in Good Country People. All is well, the descriptions are funny and entertaining, making a normal day seem a little bit more interesting than the last. Then, something strange happens. A serial killer kills the family going on vacation and a supposed bible seller steals the daughters fake leg because he thought it would be interesting to add to his collection. The events are incredibly random and almost seem out of place, but they work in the context of the story. The twist comes at the right point where the reader might think that nothing out of the ordinary is going to happen, but then the sudden change has readers attention and continued interest in the story. For my project, this seems like an interesting approach, but might not work as well in my own stories for this collection as some other stories that might develop in the future. There are not serial killers or creepy bible sellers who come to disturb the family I am writing about. But the event or twist does not have to be that. Since the serial killers and the bible seller are hilarious, they leave the reader laughing at the end, even though a family is killed and a girl loses her wooden leg. For my own benefit, it would not be something as hilarious or absurd, but something just as drastic to hook the readers into the story again and have them hold their breath to see how everything turns out. That J. Tillman 179 kind of writing is one that I want to use in my own stories and hope to execute well for all of my readers as well as myself as an author. J. Tillman 180 Russell, Karen. Vampires in the Lemon Grove: Stories . New York: Alfred A. Knopf, 2013. Print. In this collection of stories, craft is everything. The author uses craft to her advantage and creates compelling stories based on craft of the English language rather than the characters or the plot. In the title story "Vampires in the Lemon Grove," the characters are not incredibly interesting, but with the author's use of words and craft, the story reaches a new level of characterization that allows the reader to understand who each character is and the world that they live in without the words on the page directly telling the readers the motives and ideas each character has. The main characters are vampires, but readers understand that they are vampires before they are physically described as one. That level of description and understanding is one that can be achieved through reading several stories like Vampires in the Lemon Grove and other stories in general, while writing and rewriting your own words on the page. It takes practice, and through this practice, the words and stories are beautifully done and keep the reader hooked and continuing to read. There is an underlying layer of depth to each story in this collection it is never explicitly said but understood. This is what I want my writing to be like. Words are precious things that need to be thought about carefully and this collection of stories shows this perfectly. Not only does the collection tell wonderful stories that are created in the reader's mind, but it also shows me, as a writer, exactly how words have an impact on readers in profound and wonderful ways. J. Tillman 181 Saunders, George. Tenth of December: Stories . Random House: New York. 2013. Print. George Saunders is a short story author many writers strive to be one day, myself included. The writing style is unique, compelling, interesting, and easy to become enraptured in. It has been a long while since a short story caught my attention and kept it for a long period of time without interruption. It is a state referred to as the vivid and continuous dream, a term coined by James Gardner when he spoke about the narrative, structure, and plot working together as one to engage the reader for, potentially, forever. One such story in this collection was titled Escape from Spiderhead. While the story did not make sense at the beginning it was an experimental facility that tested new serums and medicine on convicts to help benefit society the character pushed the plot forward. This was his story, after all, and he would tell us what needed to be said. The further into the story I got, the more I wanted it to keep going. I did not want it to end, and when it did, I sat in silence and stared off into space because something inside me was affected by how the story had turned out. It was not something I expected, but when I went back and read it again, it was the only possible ending. The structure of the story is incredibly well done and I want my own readers to experience a story like this one, but with my own characters and plot line. I want to be able to pull readers into the story, and with the help of George Saunders, I have an example of how that idea could work for me. While I will not be writing about scientists performing questionable tasks on convicts, telling the story of children of divorce from different perspectives can be as engaging with readers of Escape from Spiderhead. J. Tillman 182 Stern, Jerome. Making Shapely Fiction . New York: W. W. Norton & Company. 1991. Print. One of the things I fall victim to when I write is using the same style of writing and story structure, which does not add variance to the stories and makes them seem similar to one another rather than their own unique stories as they should be in a collection of interconnected short stories like this. Professor McKelvey recommended this book for different structures for my stories to make the stories more interesting and not so similar to each other, and also open me up to different ways of writing that can be used beyond this project, something that is incredibly important for writers to use and express in their writing if they want to be successful. Of the 16 shapes that can be used for fiction, I looked over ten of them that could possibly be used for the five stories I had written for this honors collection. Several stories had multiple potential shapes and many stories overlapped with one another in potential structure, making the options greater and more interesting when it came to writing the stories themselves. One of my favorite shapes of fiction is called Bear at the Door, that starts with writing a story where there is a problem that is significant and pressing, such as a large bear at the door of a house trying to get in. Anything can happen in this structure, but the most important thing is that the character has to act, and they have to act now. They are not being acted upon, such as Visitation shape mentioned for another story shape. The characters act and their actions are what drives the story forward. The tension in the story comes from the battle between the challenge and the J. Tillman 183 characters need to face the problem because if the character does not react, then the bear is coming into the house and doing whatever it wants to do. And the characters do not have to act logically. The main character cant pick up the knife. He puts a Mozart symphony on the stereo. The puzzled bear eats the record. Life is suggestive, not tidy. Fiction can take any shape it wants and collections of stories are successful as long as each story has a different shape, something this book has shown me and I have used in this project. J. Tillman 184 Watkins, Claire Vaye. Battleborn . New York: Riverhead, 2012. Print. Unlike previous book I have read for this project, this collection of stories is very character based and character driven the opposite of the stories in Karen Russells Vampires In the Lemon Grove , which are very craft based and driven. That is not a problem for Claire Vaye Watkins and her collection of stories since the characters are well put together, thought out, thorough, and compelling. This, combined with a simple narrative, makes the stories compelling, touching, and engaging for the readers that seemed to be lacking in other collections that were more craft based. I found myself crying over the story of a prostitute, something I never thought would happen, and not in a derogatory way the thought had never crossed my mind to either read or write a story on that topic. The story is beautifully done, not because of the "sad life" this prostitute lived, as many people would assume because of her occupation, but that she opened up to another character when she said she would not, and then got stabbed in the back emotionally, that is what made me cry. That is what I need to use in my own writing, the raw emotion that hits hard and can move people into thinking about something they never would have taken a second thought at. My characters must be fleshed out and compelling enough to make readers feel for these fictional beings, but also show that characters are important, not only because they drive the story forward, but because they have human emotion and can seem like real people who are experiencing real feelings in real situations. That is what I learned from this collection, and what I look forward to using in my own writing the most.  ...