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... Improvement of Educational Resources for Spinal Cord Injury Patients within the Acute Inpatient Rehabilitation Setting Karolina Szymaszek 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: Dr. Lori Breeden EdD, OTR Running head: HOME PROGRAMS AND EDUCATION FOR SPINAL CORD INJURY A Capstone Project Entitled Improvement of Educational Resources for Spinal Cord Injury Patients within the Acute Inpatient Rehabilitation Setting 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 Karolina Szymaszek 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 HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 2 Abstract The Doctoral Capstone Experience (DCE) was a 14-week long clinical rotation in which students were given the opportunity to gain advanced clinical practice skills and enhance their skills in program development, client education, and client advocacy. The purpose of this project was to gain advanced clinical skills in the Spinal Cord Injury (SCI) population and to create, and enhance educational resources for the SCI population in an inpatient acute rehabilitation setting. The SCI population has been shown to have a correlation with secondary comorbidities due to inactivity and barriers faced upon discharge home from a rehabilitation facility (Wannapakhe, Arrayawichanon, Saengsuwan, & Amatachaya 2015) The SCI population is at risk for shoulder pain, pressure sores, and other complications. These comorbidities are often influenced by the barriers faced in their daily life such as falls, obstacles to mobility in the community, or inconsistent daily routines and poor compliance to activity guidelines. A needs assessment established that educational resources related to these topics needed to be developed or updated to improve the current SCI education at Community Rehabilitation Hospital North (CRH North). By working with an established team and using the steps of Continuous Quality Improvement (CQI), resources were developed following the Health Belief Model. Exit interviews with clinicians indicated that the improved educational resources at CRH North would benefit individuals with SCI and their families. The Health Belief Model was an effective way to guide resource creation and educational programming for this population and their caregivers. HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 3 Improvement of Educational Resources for Spinal Cord Injury Patients within the Acute Inpatient Rehabilitation Setting Theoretical Basis The Health Belief Model (HBM) is a psychological model, which is based on valueexpectancy outcomes (Strecher & Rosenstock, 1997, p.113-114). Value is defined when clients have the desire to avoid illness or to get well; expectation is the belief that the specific health action they are undertaking will help them either prevent or ameliorate illness. Value is also described as a clients belief that what they do will help them avoid a certain illness or bad health outcome (Strecher & Rosenstock, 1997). According to the HBM, individuals themselves perform an assessment of an action, and this assessment is broken in four parts which are: risk perception, perceived severity of ill-health, perceived benefit of their behavior change, and the decision of completing the action (Cockerham, Dingwall, & Quah, 2014). The model concludes that a combination of these four factors is what causes an individual to become ready for change and health promotional messages (Cockerhamd, Dingwall, & Quah, 2014). Health promotional messages are considered the cues which then take this individuals readiness to change and make it an action; these messages can come from health practitioners (Cockerham, Dingwall & Wuah, 2014). The use of the HBM is relevant for the spinal cord injury (SCI) population. This paper will further delve into the connection between the model and the project that was completed by this author. Guided by the HBM, an examination of the existing literature, and a department level needs assessment, this author contributed to the SCI population at Community Rehabilitation Hospital North (CRH North), in Indianapolis, Indiana. HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 4 Literature Review This literature review was completed to determine the needs of the population of individuals living with SCI. Relevant literature was gathered pertaining to the importance of physical activity in people with SCI, exercise for people with SCI, and barriers to physical activity. Importance of Physical Activity in Persons with Spinal Cord Injury It is estimated that there are approximately 276,000 people in the US living with a SCI and approximately 12,500 new SCI cases each year (National Spinal Cord Injury Statistical Center, 2015). Persons with spinal cord injury are shown by research to be one of the most inactive populations, which makes them vulnerable to comorbidities due to their sedentary lifestyle (Ginis, Jrgensen, & Stapleton, 2012). These individuals are two to four times more likely to experience conditions such as obesity, cardiovascular disease, and diabetes when compared to the rest of the population (Evans, Wingo, Sasso, Hicks, Gorgey & Harness, 2015). With circulatory diseases being the most common cause of death in the SCI population (Garshick, et al., 2005), four chronic conditions are found to be significantly related to mobility/ambulatory status: diabetes, coronary artery disease, hypertension and high cholesterol (Saunders, Clarke, Tate, Forchheimer & Krause, 2015). Additionally, this population is known to have more frequent, and severe secondary health conditions such as: pain, depression, cystitis, fractures, sleep problems, and esophageal problems (Jensen, Truitt, Schomer, Yorkston, Baylor & Molton, 2013). Many of these conditions have been linked to obesity and an inactive, sedentary lifestyle post injury (Jensen, Truitt, Schomer, Yorkston, Baylor & Molton, 2013). Not only are pressure ulcers prevalent among this population, they are also linked with anxiety and depression (Kovindha, Kammauang-Lue, Prakongsai & Wongphan, 2015). Additionally, the HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 5 majority of SCI patients suffering from secondary conditions such as pressure ulcers, identified that these had negative impacts on their social participation and daily lives (Piatt, Nagata, Zahl, & Rosenbluth, 2016). Furthermore, physical activity has been linked to the overall quality of life in people with SCI (Sweet, Martin Ginnis, & Tomasone, 2013). In the same light, muscle strength, muscle endurance, flexibility, and range of motion have been identified to improve cardiovascular health and can support life enhancing activities (Evans, et al., 2015). Exercise for SCI Physical activity guidelines have been created for the individuals with SCI that recommend adults should complete at least 20 minutes of moderate to vigorous intensity aerobic activity two times per week (Ginis et al., 2011). Additionally, it is recommended that these individuals complete three sets of 8-10 repetitions of strength training exercises two times per week which should focus on each major muscle group (Ginis, et al., 2011). For adults with SCI, following the current physical activity guidelines can improve aerobic and muscular fitness (Pelletier, Totosy de Zeptnek, MacDonald, & Hicks, 2015). For occupational therapy practitioners recommending these guidelines can improve physical capacity and overall health promotion with this population (Pelletier, et al., 2015). When examining the adherence to the physical activity guidelines for adults with SCI, it was found that only 12% of participants met the guidelines, while approximately 44% of the participants reported completing no physical activity at all (Rocchi, Routhier, Latimer-Cheung, Ginis, Noreau & Sweet, 2017). Furthermore, approximately 75% of these participants reported completing no resistance activities. Also the mode of mobility consistently correlated with the amount of physical activity participation, indicating that individuals who rely on the use of a wheelchair often completing complete little to no physical activity (Rocchi, Routhier, Latimer-Cheung, Ginis, Noreau & Sweet, 2017). HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 6 For the population of individuals with SCI, past research has linked low levels of fitness to compromised performance of patients with basic activities of daily living skills (Noreau, Shephard, Simard, & Pomerleau, 1993). More recent research has found that exercise for persons with SCI has a positive effect on performance of functional tasks such as: transfers, propelling their wheelchairs, self-care, and other ADL (Ginis, Jrgensen, & Stapleton, 2012). When compared to individuals who are inactive, individuals who have SCI and remain active and involved in sports report a higher quality of life. (Anneken, Hanssen-Doose, Hirschfeld, Scheuer & Thietje, 2009). Furthermore, higher exercise capacity in wheelchair users has been linked to a better overall quality of life when measured five years after discharge from initial inpatient rehabilitation for their SCI (van Koppenhagen, et al., 2014). Because a spinal cord injury can happen at many different levels, the clinical presentation of movement in this population depends on what muscles remain innervated. How each individual engages in their daily occupations can create a very unique set of functional capabilities. Anneken et al. (2009) concluded that it is important for physical exercise and sports to be integrated into the rehabilitation process as early as possible for individuals with SCI, with a goal of preventing the previously noted comorbidities and improving overall quality of life. Barriers to Physical Activity Barriers to physical activity faced by this population can lead to a sedentary lifestyle which increases the risk of developing the secondary health conditions (Jaarsma, Dijkstra, Geertzen & Dekker, 2014). Barriers identified include: the actual level of disability, the health of an individual, lack of motivation, environmental barriers such as not having opportunities to participate in exercise, and lack of accessibility to resources (Jaarsma, et al., 2014). Given the various barriers faced by this population, and the life altering nature of a spinal injury, HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 7 facilitating physical activity is key to improving overall physical well-being and preventing further complications (Ginis, Jrgensen, & Stapleton, 2012). In addition to barriers to physical activity, individuals with spinal cord injury face barriers to mobility and participation in basic ADL at home upon return from an inpatient rehabilitation site. Upon returning home, a significant portion of the SCI population experiences complications and falls; Wannapakhe, Arrayawichanon, Saengsuwan, and Amatachaya (2015) found that in the first six months following discharge from a rehabilitation program, 100% of individuals with SCI experienced medical complications of urinary tract infections, pressure ulcers, and neurogenic pain; all of these increased the re-hospitalization rates. In the same study, 36% of participants experienced at least one fall at home within these first six months. This is supported by later research which indicates people with SCI are at a high risk for falls (Forslund, et al., 2017). Poor balance and lack of exercise has been correlated to a higher fall risk within this population (Saunders, DiPiro, Krause, Brotherton & Kraft, 2013). Shoulder pain is a common occurrence within this population as well, and can result in range of motion limitations associated with a decreased ability to transfer, and posing a barrier to activity (Eriks-Hoogland, de Groot, Snoek, Stucki, Post & Van der Woude, 2016; Mohammed & Dunn, 2014). Better biomechanical transfer techniques have shown a correlation to less shoulder pain; techniques and having an optimal body weight can reduce the incidence and pathology of shoulder pain in people with SCI (Hogaboom, Worobey, & Boninger, 2016). The existing literature supports the importance of this population maintaining a healthy active lifestyle. But also the importance of this population and their caregivers utilizing proper transfer techniques. HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 8 Purpose of Project The purpose of this project was to create educational resources available at CRH North tailored to the specific levels of injury for the SCI patients and their caregivers. The resources consisted of training in exercise programs, family education regarding transfer training, and handouts of strengthening exercises, along with explanation of their relevance to function and independence in occupations. With an occupational based focus, the aim of this project was to create resources to influence clients occupational performance, health and wellness, and overall quality of life (AOTA, 2014). Occupational therapists use their skills to design interventions that create change or growth within their clients (AOTA, 2014). Through the lens of the occupational therapy scope of practice, the aim of this project is to improve the quality and consistency of the exercise program for individuals with a spinal cord injury. Through these enhanced resources and their connection to the patients ability to engage in functional activities, the aim was to reduce some of the barriers identified in existing literature. This will help with the prevention of secondary health risks and improvement in client factors, which has the potential to increase performance and participation in everyday occupations. This project was guided by the above mentioned Health Belief Model which is to create an enhanced exercise program that will yield the value-expectancy outcome and instill in these patients the belief that what they are doing will help them get better (Strecher & Rosenstock, 1997, p.113-114). Methods Following an examination of the literature, this author implemented the steps of Continuous Quality Improvement (CQI) in order to conduct a needs assessment and identify HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 9 specific objectives and goals which this project would follow. This upcoming section will further examine CQI and its relevance to the project, along with the methods process which this author completed. Continuous Quality Improvement Strategy This project was guided by a continuous quality improvement (CQI) approach. Bonnel and Smith (2018) offer CQI as an ongoing process and a problem-solving approach aimed to address and identify outcomes to improve health in our community. CQI follows core steps which are important to the process including: creating a team to work with, defining a goal of what you are doing, defining the customer/client needs that the goal is directed towards, determining the current baseline of what you are attempting to improve, considering different approaches to reaching the goal that you set, gathering and analyzing data, using the scientific method, creating logic models, fostering a learning culture, and sustaining effort (Guide to Continuous Quality Improvement, 2018). Needs Assessment The staff at CRH North was found to be open-minded with project ideas and focused on methods to improve care for the SCI population. To determine the direction for the project, a needs assessment was completed with the primary occupational therapist on the SCI rehabilitation team. The primary occupational therapist on the SCI rehabilitation team was this authors site mentor. The program evaluation began with an interview consisting of open-ended questions regarding areas of needed improvement for the SCI population. If this were a project which took responses from a larger amount of people, a quantitative approach would have been used, allowing pre and post measurement. In addition, if this project were to contain a needs assessment which was administered to a larger amount of people or if the population were a HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 10 company or community through a consultative, indirect approach, it would have been helpful to complete a quantitative based needs assessment which could be statistically analyzed to determine patterns within the responses. Since there was only one respondent who provided rich open ended questions, it is fitting that the data be considered as a case study would and examined using a qualitative approach. The needs assessment indicated that the educational program on site was not comprehensive, specifically in linking the importance of the resources to everyday function and caregiver education upon patients discharge home. Each patient receives a binder from the educational groups they attend during their stay in the inpatient rehab, which covers a wide variety of topics including: skin care for pressure ulcers, bladder and bowel management, general sexuality, weight management and diet, wheelchairs, home safety, depression, driving, caring for the caregiver, returning to work, and recreation and travel. However, the education was lacking an important emphasis on exercise and the reasoning behind it. Instead, existing resources contain general information about the exercise being provided. There was also a lack of educational resources for the caregivers who will hopefully review what patients learn while at the facility before discharge, participate in safety training within the home, and who assist with transfers. The reporting occupational therapist found that many patients learn safe transfers and adaptive ADL's during therapy sessions without the caregivers presence. Instead the caregivers may only be present for occasional 30-minute family education sessions which are arranged sporadically based on their availability. These intermittent experiences result in the caregivers feeling unsure about how to safely transfer patients; as a result, patients do not feel safe. In addition, this can lead to patients becoming sedentary and inactive, and a likely factor in the report of secondary complications in previously discharged patients. The reporting occupational HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 11 therapist also indicates that the information provided in inpatient rehabilitation is not retained by the caregivers as it relates to functional importance and overall wellness. This expands on the literature reported earlier in this paper, which indicated that people with SCI are at high risk for falls upon discharge home (Forslund et al., 2017). Additionally, the results from the needs assessment interview indicate that the occupational therapist would like the resources to include why exercise, movement, and active participation in occupations (ADLs, IADLs, leisure, etc) are important after discharge from a rehabilitation hospital to prevent SCI patients from experiencing atrophy, weakness, and loss of motivation. Overall, the responder to the survey wanted the resources to be tailored to paraplegics and quadriplegics specifically The results of this needs assessment are supported by literature reported earlier, which offers that individuals following SCI are two to four times more likely to experience conditions related to immobility such as obesity, cardiovascular disease, and diabetes when compared to the rest of the population (Evans et al., 2015), and are more prone to developing pressure ulcers (Kovindha, Kammauang-Lue, Prakongsai & Wongphan, 2015), along with many other secondary complications which are related to obesity and living an inactive, sedentary lifestyle post injury (Jensen, Truitt, Schomer, Yorkston, Baylor & Molton, 2013). Service Model and Relevance to Occupational Therapy Utilizing a direct service delivery model approach, this project was designed with the intention to directly improve the lives of clients through the use of occupation in the inpatient rehabilitation practice setting; this approach is also seen in outpatient settings, schools, and acute care hospitals (AOTA, 2014). If this were a community-based or company based (work) setting, an indirect service delivery model approach would be more fitting because of its consultative nature (AOTA, 2014). From here, The Health Belief Model will provide the theoretical HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 12 foundation to design these educational handouts based on the needs of the patient. The implementation of this educational program will follow a CQI schedule. The DCE was divided into two portions, one of which focused on program development and client education project and the other portion focused on the development of advanced clinical skills with the SCI population in the inpatient rehabilitation at CHR North. Advanced clinical skills, were developed under a site mentors supervision. With these developing clinical skills, the author provided direct service delivery; working with patients and their families directly and providing treatments (AOTA, 2014). This experience supported the development of the client education resources. Implementation Phase Using the theoretical framework and knowing what the literature has to say about this population, along with having a completed needs assessment of what is needed on site, the author of this paper was able to compile the information. Following the steps of CQI, a plan of action for resource creation was created. This next section of the paper will be further examining the implementation phase with the use of the Health Belief Model, and discuss the staff development and leadership through the process. Health Belief Model The Health Belief Model is based on the concept that if people consider themselves susceptible to a condition (perceived susceptibility) and believe that it has possibly severe consequences (perceived severity), they will take action to prevent such condition/illness believing that these actions will help them avoid this condition, or experience positive outcomes available to them (perceived benefits) (Jones, Jensen, Scherr, Brown, Christy & Weaver, 2014). According to this model, people will be more motivated to take these actions if they perceive HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 13 fewer barriers to completing this action (perceived barriers) (Jones, Jensen, Scherr, Brown, Christy & Weaver, 2014). The combination of these four concepts prepares an individual for change and health promotional messages; these health promotional messages can come from health practitioners, and are considered the cues which prompt an individuals readiness to change and make it an action (Cockerham, Dingwall & Wuah, 2014). The resources created for the CHR North site for this project followed the Health Belief Model. The resources educated clients through the steps of the Health Belief Model identified above. Each resource explained to the clients the risks that they are susceptible to due to their injury, along with an explanation to clients the possible severe consequences of these risks. The resources then educated the clients that there are things they can take action with to help prevent these risks or conditions from developing. Through then providing patient and caregiver education of safety and adaptive ways to complete activities the resources helped clients perceive fewer barriers to taking action to prevent these risks. By following the steps of the model, these resources act as tools available for clients to take their health into their own hands. The occupational therapists using these resources to educate clients will act as the health promotional messages that take clients readiness and acceptance to change and put it into action. Organizational Process of Project Implementation After completing the needs assessment, a weekly scheduling calendar guided the design of the DCE. The educational materials, overall health and wellness, paraplegic, quadriplegic, and family education were completed over an eight-week span. The schedule was approved by the site mentor. Educational handouts were prioritized based on the site needs. HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 14 Resources Identified to Be Created Through the needs assessment, specific resources were identified to be created. This following section will run through what these resources were, along with the importance of them being created with an occupational therapy scope of practice. For the first section, the following was established as a priority outlining overall wellness: the importance of exercise and impacts on functional activity. This was a general packet of information which included current statistics demonstrating the problems and health challenges this specific population faces, benefits exercise has to health, an autonomic dysreflexia warning and personalized action plan if it occurs, explanation of the research based activity guidelines for the SCI population, and a resource explaining how important it is to continue to work on these things following discharge home from an inpatient facility in order to lower the risks of secondary health risks occurring. The second section of resources were specific to the paraplegic population and included educational material and exercises. The following topics were prioritized: importance of stretches, the relationship of upper extremity exercises to daily activities and their functional importance, stretching, balance and core exercises, and the relationship of core strength to completion of ADLs. Designing these handouts from an OT perspective was an important part of the process. Exercises in these handouts were identified and their importance linked to being to the functional aspects of daily occupations. Exercises and stretches were described along with the rational of their connection to occupations. Additionally, a resource outlining adaptive cardio exercises and resources providing local facilities and opportunities for adaptive sports were created. The third section of resources were specific to the quadriplegic population. The following HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 15 were prioritized: maintaining shoulder stability through strengthening, range of motion and stretching. Resources on pressure relief and pressure ulcer complications were created, these included: pressure ulcer statistics, the importance of completing effective pressure relief, maintaining proper positioning, and handouts with images on completion of pressure relief. The fourth section of resources were family education specific. The following were prioritized: hip to head ratio explanation during transfers, and handouts teaching safety during transfers which focused on fall prevention and body mechanics for both the patient and their caregiver. Additionally, visual step by step demonstrative resources were produced for each of the following: a mat to wheelchair sliding board transfer, and a wheelchair to bedside commode transfer. Development of Resources The following steps structured the development of resources for this program: utilization of a rehab technician, regular review of the evidence and handouts organization with my site mentor, and a scheduled draft review. A rehabilitation technician who works at the site provided assistance. Scheduled time was determined for the rehabilitation technician to assist with this project and was included in the timeline. Scheduling these blocks of time allowed the rehab technician, site mentor and the author to work as a team and create the images used in the educational handouts. The organization of each handout was consistently communicated with the site mentor via informal meetings. During these meetings, evidence-based reasoning that guided the handouts, the current research related to the topic and, the process outlined by the HBM were reinforced. Through these meetings, continuous, collaborative changes were made to the content. As each handout was completed, drafts were sent to the site mentor to edit as a whole and finalize any last-minute changes. HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 16 Because the needs assessment identified a need to help patients manage their health in relation to common secondary complications, resources helping patients understand the importance of these complications in relation to their occupations were needed. Therefore, each resource was made with the intention of taking the educational topic and providing patients with the evidence that allows them to see their perceived severity of ill health. The hope is that the through patients engaging with the resources, the educational material will clarify their risk perception by helping them identify what their specific risks. These are the first two steps of the Health Belief Model (Cockerham, Dingwall & Wuah, 2014). From there, following the third and fourths steps of the model, patients were able to learn from the evidence their susceptibility of the complication and then the resources within each handout provided information about what to change, and the ways to implement the change. This organization of each handout is what will help patients to identify and understand the benefits of behavior change and how they might minimize the perceived barriers to their change (Cockerham, Dingwall & Wuah, 2014). Because these resources were designed following the steps of the model and provide links to functional performance related to OT, the resources themselves act as the health promotional messages, which the Health Belief Model identifies as cues that can help patients turn their readiness to change into an action (Cockerham, Dingwall & Wuah, 2014). The design this organizational process of creating resources followed was a Plan-DoStudy-Act process of CQI to define the problem, identify measures, and systematically test them in short, but rapid cycles which are fixes to the problem (National Learning Consortium, 2013). Following the steps listed above, an idea and layout was planned for a resource, literature applicable to the topics was gathered and studied, resources were created following the Health Belief Model, resources were then reviewed by site mentor in order to identify any fixes to be HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 17 completed. Using the Plan-Do-Study-Act process of CQI, steps were made to address the problem of limited educational material as identified in the needs assessment. Staff Development The regular meetings with the site mentor focused on the creation of resources. These meetings also served as a form of education through the explanation of new evidence regarding resource topics. This authors explanation and reasoning behind the information informed the site mentor about the newest literature, which the site mentor then utilized when treating and educating patients. The site mentor reported these meetings as very beneficial for her, since learning recent literature has helped improve her skills as a clinician. Additionally, the rehab technician on this project also reported that participating in the process of the project was beneficial for him. In creating the images for the resources, the reasoning behind the topics was reinforced, within education on proper patient care. The rehab technician reported that this process developed his knowledge in the areas of proper patient care with transfers, pressure relief, and the importance of preserving upper extremity joint integrity. The site mentor also reported that having these resources available on the universal computer drive will be a benefit for other clinicians. The site mentor is the primary occupational therapist working with the SCI population, and many of the occupational therapists at this site have not had a chance to treat a patient with a spinal cord evaluation through discharge. These resources are available to all practitioners and will support and develop their skills in the future. The resources will be a benefit as something that the clinicians are needing at the moment for patient education, or if they wish to examine more up to date, evidence based information about these topics. Therefore, these less experienced therapists will benefit from these evidence supported resources as their skills improve. HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 18 Leadership Throughout this process, leadership was demonstrated in various ways. Leadership was developed in the areas of creativity, teamwork, flexibility, active listening, ability to accept feedback, delegation of tasks, and taking initiative. Leadership creativity improved with the writing and development of resources throughout the span of the Doctoral Capstone Experience. Delegation of tasks improved through choosing who on site would assist with resource creation, and managing their performance. Teamwork skills developed through an ability to work with the team to meet and create images and in editing of the draft. Additionally, flexibility in leadership was demonstrated through adjustments to daily and weekly schedules to adapt to the changes in a fast-paced, quick to change inpatient setting. Flexibility was also needed when scheduling time for the team to meet and create images for resources. Growth in leadership also showed in an improved ability to use active listening skills and receive feedback positively throughout meetings and development of clinical skills, as the site mentor would provide constructive feedback regarding the patient care and drafts of resources. All of these leadership skills developed as the time on site continued, and will be essential traits for future occupational therapy practice. Outcome Phase Regarding the outcome phase of the project, the following section of this paper will describe the processes for quality improvement that were designed, along with the program changes that were developed as needed to guide administrative changes and ensure the ongoing quality of services for the DCE project. Continuous Quality Improvement Process Bonnel & Smith (2018) teach us that continuous quality improvement (CQI) is an HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 19 ongoing process and a problem-solving approach aimed to address and identify outcomes to improve health in our community. CQI is described as having core steps which are important to the process, these steps are: creating a team to work with, defining a goal of what you are doing, defining the customer/client needs that this goal is directed towards, determining the current baseline of what you are attempting to improve, considering different approaches to reaching the established goals, gathering and analyzing data, using the scientific method, creating logic models, fostering a learning culture, and sustaining effort (Guide to Continuous Quality Improvement, 2013). All of these steps were implemented throughout the duration of this project. By choosing the occupational therapist who is the lead of the SCI rehabilitation team as site mentor, this author decided for her to be her team leader. In an interview with the team leader, the customers goal directed needs were identified and defined. Additionally, the team leader identified a baseline of SCI educational resources available, and with the author, brainstormed various as of increasing access to educational resource. Throughout this process, the site mentor and author assessed the current baseline of the SCI HEP on site at Community Rehabilitation Hospital North. They both then considered different approaches of how to create the educational resources necessary. Through the duration of the project, the author remained current in the literature regarding the following topics: SCI activity guidelines, SCI comorbidities, and SCI barriers to activity. A learning culture was fostered throughout the duration of the project by the author continuously consulting with her site mentor about current evidence-based practice. This occurred primarily when the author consulted the site mentor about justifying the information in the resources, and explaining to the site mentor the evidence that supports this reasoning. Upon preparing to leave the site, the author administered another interview with the site mentor HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 20 regarding the program. Throughout the closing interview, the author and site mentor discussed the importance of the continuation of updating resources for not only the SCI population, but for other at-risk populations that are encountered in the facility. Discontinuation and Sustainability Once all final versions of the resources were complete, they were uploaded onto the T drive at the site in order to create and maintain sustainability. The T drive is a shared drive with resource folders that every therapist can easily access on their computer and print as needed. To ensure the resources would be easy to access in the future, each document was uploaded with a proper name and description. The naming process was completed with the site mentor to ensure accessibility and future use, in case any of the other occupational therapists were to provide coverage and treat a SCI patient upon the site mentors absence or unavailability. Needs Addressed and Outcomes This project addressed the societal needs for this population identified by literature above, such as: transfer training due to high fall risk (Forslund, et al., 2017; Saunders, DiPiro, Krause, Brotherton & Kraft, 2013; Wannapakhe, Arrayawichanon, Saengsuwan, & Amatachaya, 2015), secondary complications from immobility (Jensen, Truitt, Schomer, Yorkston, Baylor & Molton, 2013; Piatt, Nagata, Zahl, & Rosenbluth, 2016; Saunders, Clarke, Tate, Forchheimer & Krause, 2015; Sweet, Martin Ginnis, & Tomasone, 2013), shoulder pain causing immobility and poor transfers (Eriks-Hoogland, de Groot, Snoek, Stucki, Post & Van der Woude, 2016; Hogaboom, Worobey, & Boninger, 2016; Mohammed & Dunn, 2014. This project also focused on the development of advanced practice skills with the SCI population in the inpatient rehabilitation setting. The client for this DCE included the Community Rehabilitation Hospital North Therapy Department, patients with SCI, and their families/caregivers. HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 21 After uploading the resources onto the T drive, the student conducted an interview with the site mentor about the DCE. The site mentor reported that this author obtained the necessary advanced clinical skills required to work with the SCI population in this setting. Regarding the program development aspect of the DCE, the site mentor reported that the project completed at the site met the needs that were identified in the needs assessment conducted at the beginning of the project, and that the quality of available resources was improved. The site mentor also reported that in the future, she can foresee these resources being extremely helpful for patients and caregivers to take home, and continually access in support of their recovery which could help decrease some of the re-hospitalizations and complications occurring in previously discharged patients. Overall Learning A Doctoral Capstone Experience differs from a Level 2 Fieldwork experience by the various foci and outcomes that can occur. The author of this paper chose to pursue a focus of clinical skills, with program development, advocacy, and client education as secondary pursuits. Through this unique blend of areas, this project allowed different skillsets to be enhanced which differed from knowledge obtained at a standard Level 2 Fieldwork experience. This next section will reveal the unique aspects of overall learning gained through this experience; leadership, communication, confidence and skills in patient care. Leadership Skills The unique nature of the DCE requirements pushes students to take on leadership roles. The direction of the project lays solely in the students hands. In a qualitative study completed to determine why occupational therapists choose the path of leadership, respondents expressed that key leadership skills for occupational therapists are: skill in interaction and building HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 22 relationships, confidence and competence, and to be visionary and practical (Heard, 2014). These skills were demonstrated throughout the DCE. Determining the objectives of the project and dividing time between those objectives meant there was a need for self-direction to take on a leadership role. Communication Skills. Communication skills are identified as some of the most important skills for an occupational therapist to possess (Heard, 2014). Communication skills are defined as not only the way which an individual communicates verbally and non-verbally, but also as the ability to build relationships professionally (Heard, 2014). Throughout the DCE experience, the author developed her communication skills in both verbally and non-verbally. Communication skills were continuously needed during interactions with other health practitioners, patients, caregivers, and medical providers. The forms of professional communication developed included: letters, phones calls, direct one-on one interactions, and interactions within a group. Through the development of professional communication skills, successful professional relationships and rapport were built and supported the quality of this project. This development of communication skills and the development of professional relationships both positively influenced the authors confidence and credibility. Confidence and credibility. Through learning and practicing new clinical skills, this author was able to gain confidence in her knowledge. By spending over half of the time requirement developing clinical skills specific to SCI rehabilitation as a specialization, the author gained advanced clinical skills. Due to the constant need to advocate for many patients, proficiency in advocacy as well as confidence grew improving the authors ability to support the needs of the patients. Advocacy for patients occurred in the following ways: writing letters of necessity for medical equipment, advocating on behalf of the patient to case management, HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 23 advocating on behalf of the patient to their primary physician regarding their medical needs based on observations during treatments, advocating for the patients needs to wheelchair and adaptive equipment vendors, advocating on behalf of the patient to caregivers and what they will need to be doing at home to ensure the patients well-being and optimal occupational success, and teaching patients to advocate for themselves. The author perceived that the development of confidence in clinical skills established her credibility among other clinicians. Credibility has been shown to be an important trait possessed by leaders specifically in the occupational therapy field (Heard, 2014). At the start of the DCE, the authors credibility among the rest of the health care professionals on staff was minimal. This status of low credibility made the abovementioned advocacy difficult. However, as the author developed clinical skills with this population, she felt that her expertise with this population developed. Through this development of expertise, the author sensed that her credibility increased as well. This advancement of clinical skill furthered the authors advocacy efforts as well; she was able to notice changes in respect amongst staff, as well as the staff regarding her advocacy efforts on the same level that they would her site mentor. Psychosocial Approach to the Spinal Cord Injury Population Through the clinical skill portion of the DCE, the author learned a holistic approach to treating clients. Staying true to the nature of occupational therapys holistic approach to treating patients was important in addressing the patients psycho-social needs as well as their physical needs. Hope plays an important role in recovery following spinal cord injury (Van Lit & Kayes, 2014). Studies report that within the spinal cord injury population, hope is associated with reduced depression, improved coping, higher self-esteem and increased life satisfaction (Van Lit & Kayes, 2014). Guided by the literature, the site mentor, and clinicians at CHR North, the HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 24 author has learned the importance of hope when treating patients with spinal cord injury. Health care providers on site offer in-services and reminders throughout the work day about the importance of keeping patients hope in tact during the early phase of inpatient rehabilitation. This consists of never breaking news to a patient in a negative light, and instead using phrases such as: nerves and the spinal cord heal very slowly, and we will work with what we currently have, and gain as much independence as possible. It is taught that this is an important aspect of the psychosocial factors of working with this population. The reasoning behind it is that when patients are in this fragile stage of denial during their inpatient rehabilitation stay, clinicians do not want to crush their hope because hope is what gives patients their drive and motivation to fully participate in therapy. Summary of Overall Learning Occupational therapists have the potential to be in leadership roles because of their skills in professional communication, relationship building, and clinical skills that they engage in daily (Heard, 2014). Additionally, the nature of the professional focus of occupational therapy makes leadership an imperative. This DCE has supported development in the abovementioned areas. The skills gained will carry over into this authors professional career, and will support an ongoing transformation as an effective leader in the field of Occupational Therapy. HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 25 References American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68 (Suppl.1), S1-S48 Anneken, V., Hanssen-Doose, A., Hirschfeld, S., Scheuer, T., & Thietje, R. (2009). Influence of physical exercise on quality of life in individuals with spinal cord injury. Spinal Cord, 48(5), 393-399. doi:10.1038/sc.2009.137 Bonnel, W., & Smith, K. (2018). Proposal Writing for Clinical Nursing and DNP Projects. Springer Publishing Company. Cockerham, W., Dingwall, R., & Quah, S. R. (2014). The Wiley Blackwell Encyclopedia of Health, Illness, Behavior and Society [5 vols.]. Wiley-Blackwell. Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Eriks-Hoogland, I., de Groot, S., Snoek, G., Stucki, G., Post, M., & Van der Woude, L. (2016). Association of shoulder problems in persons with spinal cord injury at discharge from inpatient rehabilitation with activities and participation 5 years later. Archives of Physical Medicine and Rehabilitation, 97(1), 84-91. Evans, N., Wingo, B., Sasso, E., Hicks, A., Gorgey, A. S., & Harness, E. (2015). Exercise recommendations and considerations for persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 96(9), 1749-1750. Forslund, E. B., Jrgensen, V., Franzn, E., Opheim, A., Seiger, ., Sthle, A., ... & Wahman, K. (2017). High incidence of falls and fall-related injuries in wheelchair users with spinal cord injury: a prospective study of risk indicators. Journal of Rehabilitation HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 26 Medicine, 49(2), 144-151. Garshick, E., Kelley, A., Cohen, S. A., Garrison, A., Tun, C. G., Gagnon, D., & Brown, R. (2005). A prospective assessment of mortality in chronic spinal cord injury. Spinal Cord, 43(7), 408. Ginis, K. M., Hicks, A. L., Latimer, A. E., Warburton, D. E. R., Bourne, C., Ditor, D. S., ... & Pomerleau, P. (2011). The development of evidence-informed physical activity guidelines for adults with spinal cord injury. Spinal Cord, 49(11), 1088 Ginis, K. A. M., Jrgensen, S., & Stapleton, J. (2012). Exercise and sport for persons with spinal cord injury. PM&R, 4(11), 894-900. Guide to Continuous Quality Improvement. (2018, November 19). Retrieved from https://www.smartsheet.com/continuous-quality-improvement Heard, C. P. (2014). Choosing the path of leadership in occupational therapy. The Open Journal of Occupational Therapy, 2(1), 2. Hogaboom, N. S., Worobey, L. A., & Boninger, M. L. (2016). Transfer technique is associated with shoulder pain and pathology in people with spinal cord injury: a cross-sectional investigation. Archives of Physical Medicine and Rehabilitation, 97(10), 1770-1776. Jaarsma, E. A., Dijkstra, P. U., Geertzen, J. H. B., & Dekker, R. (2014). Barriers to and facilitators of sports participation for people with physical disabilities: A systematic review. Scandinavian Journal of Medicine & Science in Sports, 24(6), 871-881. Jensen, M. P., Truitt, A. R., Schomer, K. G., Yorkston, K. M., Baylor, C., & Molton, I. R. (2013). Frequency and age effects of secondary health conditions in individuals with spinal cord injury: a scoping review. Spinal Cord, 51(12), 882. Jones, C. L., Jensen, J. D., Scherr, C. L., Brown, N. R., Christy, K., & Weaver, J. (2014). The HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 27 Health Belief Model as an Explanatory Framework in Communication Research: Exploring Parallel, Serial, and Moderated Mediation. Health Communication, 30(6), 566- 576. doi:10.1080/10410236.2013.873363 Kovindha, A., Kammuang-Lue, P., Prakongsai, P., & Wongphan, T. (2015). Prevalence of pressure ulcers in Thai wheelchair users with chronic spinal cord injuries. Spinal Cord, 53(10), 767. Mohammed, K., & Dunn, J. A. (2014). Shoulder pain in tetraplegia. Orthopaedics and Trauma, 28(1), 27-32. Nash, M. S., van de Ven, I. V., van Elk, N. V., & Johnson, B. M. (2007). Effects of Circuit Resistance Training on Fitness Attributes and Upper-Extremity Pain in Middle-Aged Men With Paraplegia. Archives of Physical Medicine and Rehabilitation, 88(1), 70-75. doi:10.1016/j.apmr.2006.10.003 Hogaboom, N. S., Worobey, L. A., & Boninger, M. L. (2016). Transfer technique is associated with shoulder pain and pathology in people with spinal cord injury: a cross-sectional investigation. Archives of Physical Medicine and Rehabilitation, 97(10), 1770-1776. National Spinal Cord Injury Statistical Center. (2015). Facts and Figures at a Glance [Fact sheet] Retrieved from https://msktc.org/lib/docs/Data_Sheets_/MSKTC_SCIMS_Fact_Fig_2015.pdf Noreau, L., Shephard, R. J., Simard, C. L. E. R. M. O. N. T., Par, G. I. L. E. S., & Pomerleau, P. (1993). Relationship of impairment and functional ability to habitual activity and fitness following spinal cord injury. International Journal of Rehabilitation Research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue internationale de recherches de readaptation, 16(4), 265-275. Pelletier, C. A., De Zepetnek, J. T., MacDonald, M. J., & Hicks, A. L. (2015). A 16-week HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 28 randomized controlled trial evaluating the physical activity guidelines for adults with spinal cord injury. Spinal Cord, 53(5), 363 Piatt, J. A., Nagata, S., Zahl, M., Li, J., & Rosenbluth, J. P. (2016). Problematic secondary health conditions among adults with spinal cord injury and its impact on social participation and daily life. The Journal of Spinal Cord Medicine, 39(6), 693-698. Rocchi, M., Routhier, F., Latimer-Cheung, A. E., Ginis, K. M., Noreau, L., & Sweet, S. N. (2017). Are adults with spinal cord injury meeting the spinal cord injury-specific physical activity guidelines? A look at a sample from a Canadian province. Spinal Cord, 55(5), 454. Saunders, L. L., Clarke, A., Tate, D. G., Forchheimer, M., & Krause, J. S. (2015). Lifetime prevalence of chronic health conditions among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 96(4), 673-679 Saunders, L., DiPiro, N., Krause, J., Brotherton, S., & Kraft, S. (2013). Risk of fall-related injuries among ambulatory participants with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 19(4), 259-266. Strecher, V. J., & Rosenstock, I. M. (1997). The health belief model. Cambridge Handbook of Psychology, Health and Medicine, 113-117. Sweet, S. N., Martin Ginis, K. A., & Tomasone, J. R. (2013). Investigating intermediary variables in the physical activity and quality of life relationship in persons with spinal cord injury. Health Psychology, 32(8), 877. van Koppenhagen, C. F., Post, M., de Groot, S., van Leeuwen, C., van Asbeck, F., Stolwijk-Swste, J., ... & Lindeman, E. (2014). Longitudinal relationship between HOME PROGRAMS AND RESOURCES FOR SPINAL CORD INJURY 29 wheelchair exercise capacity and life satisfaction in patients with spinal cord injury: A cohort study in the Netherlands. The Journal of Spinal Cord Medicine, 37(3), 328-337. Van Lit, A., & Kayes, N. (2014). A narrative review of hope after spinal cord injury: Implications for physiotherapy. New Zealand Journal of Physiotherapy, 42(1). Wannapakhe, J., Arrayawichanon, P., Saengsuwan, J., & Amatachaya, S. (2015). Medical complications and falls in patients with spinal cord injury during the immediate phase after completing a rehabilitation program. The Journal of Spinal Cord Medicine, 38(1), 84-90.  ...

... Running head: QUALITY OF LIFE FOR INDIVIDUALS WITH DEMENTIA 0 Quality of Life for Individuals with Dementia within Long-Term Care: The Role of Occupational Therapy Caitlynn Strobel 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: Dr. Julie Bednarski, OTD, MHS, OTR QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 1 A Capstone Project Entitled Quality of Life for Individuals with Dementia within Long-Term Care: The Role of 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 Caitlynn Strobel, 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 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 2 Quality of Life for Individuals with Dementia within Long-Term Care: The Role of Occupational Therapy Caitlynn Strobel, OTS University of Indianapolis QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 3 Abstract Long-term care facilities provide care to older adults, including individuals with dementia, and promote client-centered care through maximizing functional independence and cultivating ones quality of life (Moyle, Fetherstonhaugh, Greben & Beattie, 2015). Throughout the doctoral capstone experience (DCE), an occupational therapy (OT) student from the University of Indianapolis promoted the OT profession through the creation and implementation of an educational program for staff and therapists at University Heights Health and Living facility. A self-created needs assessment was conducted to evaluate existing knowledge of staff and therapists regarding dementia and quality of life. The DCE student utilized needs assessment results and evidence-based literature to develop the educational in-service and handout for staff and therapists. At the beginning of the educational program, participants completed a self-developed pre-survey. At the conclusion of the program presentation, the selfdeveloped post-survey was administered to the participants to determine the effectiveness of the educational program, handout, and provide supplemental comments for future program improvement. Overall, staff and therapists self-reported ratings on their knowledge regarding dementia, quality of life and dementia staging improved after participating in the educational program. Both therapists and staff ratings of their self-perceived confidence with providing care for individuals with dementia increased as well. The Goal Attainment Scale (GAS) was utilized to appraise the outcome of the educational in-service and handout, which both exceeded the expected level of outcome. Overall, the results demonstrate the educational program and handout were successful and would be advantageous to continue to provide for therapists and staff at University Heights Health and Living facility. QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 4 Quality of Life for Individuals with Dementia within Long-Term Care: The Role of Occupational Therapy Literature Review Nearly 5.7 million individuals in America are currently living with Alzheimers disease or some form of dementia, and this number is projected to grow to almost 14 million by the year 2050 (Alzheimers Association, 2018). It is a common misconception that dementia is an aspect of normal aging (Butcher, 2018; World Health Organization [WHO], 2017). In reality, dementia is a progressive condition often characterized by various symptoms, including memory deficits, difficulty expressively communicating, as well as a reduction in ones functional skills utilized to complete activities of daily living (ADLs) (Butcher, 2018; Dooley & Hinojosa, 2004; Maki & Endo, 2018; Ojagbemi & Owolabi, 2017; WHO, 2017). Individuals with dementia may also experience disruptions in their sleep patterns and an increased difficulty with emotional regulation (Butcher, 2018; Maki & Endo, 2018). Agitation is often a symptom of dementia as a result of distress from an individuals needs not being met (Butcher, 2018). Unfortunately, there is no cure for dementia and as a result it has increasingly become a global concern (Butcher, 2018; Garcia et al., 2012; Klapwijk, Caljouw, Pieper, van der Steen & Achterberg, 2016; WHO, 2017). Long-term Care Researchers have found that approximately half of individuals that reside in long-term care facilities possess a diagnosis of dementia and this number will continue to increase (Crespo, Hornillos & de Quirs, 2013; Harris-Kojetin et al., 2016; Moyle, Fetherstonhaugh, Greben & Beattie, 2015). The simultaneous physical and psychological decline associated with dementia are influential factors that accelerate the transition of individuals with dementia from the QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 5 community to a long-term care facility, due to the need of an increased level of care (HarrisKojetin et al., 2016; Klapwijk et al., 2016; Moyle et al., 2015). Behavioral problems, such as aggression and wandering, are often factors used to determine whether an individual should be placed in long-term care facilities (Garcia et al., 2012). Transitioning from the community to long-term care can be difficult for individuals with dementia. This process may feel like a loss of choice, leading to separation between an individual with dementia and their loved ones, and decreasing their sense of social support. (Moyle et al., 2015; Watt & Konnert, 2007). Moyle and colleagues also noted individuals with dementia living in long-term care had an increased risk for loneliness and isolation (2015). As an effort to reduce loneliness and isolation, long-term care facilities promote personcentered care as an approach to provide gold-standard quality care (Butcher, 2018; Moyle et al., 2015). However, Moyle and colleagues disclosed when staff are addressing challenging behaviors of an individual with dementia, care is often underlined by competence and safety, rather than the wishes and necessities of the individual at hand (2015). As a result, individuals with dementia whose wishes and necessities are not being met will often experience a decreased quality of life (Kane et al., 2003; Naylor et al., 2016). Quality of Life Despite the lack of research conducted on quality of life in long-term care, this broad, allencompassing construct is becoming a prevalent topic within the world of healthcare, emphasizing patient respect and improved quality care (Kane et al., 2003; Moyle et al., 2015). Quality of life is a multifaceted subject determined by ones perception of their life relative to their ambitions, intentions, and apprehensions, as well as the context and environment in which they reside (Klapwijk et al., 2016). However, the physical aspects often have a stronger QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 6 emphasis within intervention compared to other aspects, resulting in an imbalance and overall negatively impacting ones quality of life (Beerens et al., 2016; Lee, Cheng, Lin, Liao & Chen, 2018; Watt & Konnert, 2007). Cultivating and preserving the quality of life of individuals with dementia is critical (Klapwijk et al., 2016; Moyle et al., 2015). In order to do so, there are many influences to consider. An individuals emotional state or mood is a significant contributing factor to fluctuations in perceived quality of life (Crespo et al., 2013; Lee et al., 2018; Naylor et al., 2016). For individuals with dementia, a depressed mood can be associated with not only an increase in physical dependence, but also a prevalence of negative behaviors (Crespo et al., 2013). Encouraging individuals with dementia to actively engage in daily activities, such as self-care, social participation and leisure, can improve an individuals mood resulting in an increased quality of life (Beerens et al., 2016; Dooley & Hinojosa, 2004; Moyle et al., 2015). Although quality of life is influenced by many factors, assessment is feasible, but unfortunately, it is not always conducted in a comprehensive manner (Crespo et al., 2013; Klapwijk et al., 2016; Lee et al., 2018; Moyle et al., 2015). Standardized assessments usually do not account for a holistic view of ones perceived quality of life, whereas a structured interview may provide additional beneficial information (Kane et al., 2003). Oftentimes, it is overlooked that individuals with dementia can accurately express what factors may be hindering their quality of life (Crespo et al., 2013; Moyle et al., 2015). Researchers have found that relatives and caregivers of individuals with dementia have a perceived understanding that quality of life is impacted considerably by the level of functional impairment of the patient and often caregivers report a lower rating than the self-rating of the individual with dementia (Crespo et al., 2013; Klapwijk et al., 2016; Moyle et al., 2015). QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 7 Caregiving Provided by Staff Whether one is a relative or a staff member at a long-term care facility, caregiving for individuals with dementia is challenging (Dooley & Hinojosa, 2004; WHO, 2017). Oftentimes, long-term care facilities have limited resources for staff members to utilize when providing care, hindering their ability to promote the well-being of their patients (Garcia et al., 2012; Watt & Konnert, 2007). Promoting the well-being of individuals with dementia occurs through providing a level of care that preserves their level of independence respective to the stage of disease progression being experienced (Dooley & Hinojosa, 2004; Moyle et a., 2015). However, caregivers will often complete tasks or make decisions for individuals with dementia for their own convenience, diminishing the level of independence they experience (Moyle et al., 2015). Research notes that this may be due to staff lacking adequate preparation to care for individuals with dementia, precipitating a sense of guilt for not sufficiently meeting patient needs (Butcher, 2018). Elements of unpreparedness include, but are not limited to, a lack of education for staff and other various staffing issues within a facility (Butcher, 2018; Garcia et al., 2012). In addition, a caregiver with limited knowledge is often perceived as unwilling to provide quality care (Butcher, 2018). These barriers can cause significant emotional strain, such as depression, for staff members and result in burnout (Butcher, 2018; Dooley & Hinojosa, 2004). Also, research indicates that caregiver burden impacts treatment and consequently influences the quality of life of individuals with dementia (Dooley & Hinojosa, 2004). This alone demonstrates that there is a need for more support of staff by providing adequate education and training to aide in decreasing the burden of care they experience on a daily basis (Butcher, 2018; WHO, 2017). Establishing staff competence regarding dementia and quality of life can minimize the risks of QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 8 individuals with dementia residing in long-term care facilities (Butcher, 2018; Garcia et al., 2012). Occupation-Based Model For this doctoral capstone experience (DCE) project, an educational in-service program was developed for all staff and therapists on the importance of quality of life for individuals with dementia residing in long-term care facilities. The program began preparing staff and therapists for future programming in relation to dementia staging through education emphasizing the topics of dementia, long-term care, and quality of life. As a result of the program, the staff and therapists reported an improved understanding of the progressing nature of dementia and how an individuals quality of life can be impacted, specifically in the long-term care setting. The Ecology of Human Performance (EHP) model was the theoretical guide for this DCE project. The focus of this model includes individuals of differing ages, as well as ones needs across their lifespan (Cole & Tufano, 2008). The EHP model accentuates a preventative, rehabilitative and health-promotion approach (Cole & Tufano, 2008). The EHP model incorporates three important aspects: person, tasks, and context. Person includes cognitive, psychomotor, and other personal traits (Cole & Tufano, 2008). In relation to the DCE project, the person represented all of the employees who participate in resident care within the University Heights Health and Living community. It is important to understand all aspects of the staff and therapists. To implement the program, an in-service was provided for all employees interested in furthering their knowledge on individuals with dementia and their quality of life. By taking an interdisciplinary approach, individuals with a range of educational achievements and interests came together as a group, facilitated growth, and experienced a positive, knowledge-rich experience together. Tasks are behaviors that are essential to achieve QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 9 goals (Cole & Tufano, 2008). In regard to the DCE project, tasks were the job duties or occupations the staff and therapists participate in, such as assisting an individual with dementia with taking a shower. This in-service gave staff the opportunity to gain knowledge about dementia and better understand how it progresses, which in turn will facilitate an increased quality of life experienced by the individuals with dementia and decrease their burden of care. This decreased burden of care will lead to more job duties and occupations the staff and therapists can participate in. Context involves a persons surroundings, both temporal and environmental (Cole & Tufano, 2008). In relation to the DCE project, the physical context was the University Heights Health and Living community in which the staff and therapists work in. The temporal context was the shift or time of day in which the staff members work, as well as the current year. The other employees and residents in which a particular staff member interacts with were all components of the social context. Finally, the EHP model looks at person-contexttask transaction, which identifies how a person participates in relation to tasks within their context and the impact on overall human performance (Cole & Tufano, 2008). When considering the person-context-task transaction within the employees lives, there was an incongruence, often on account of lack of education, leading to their negative perceptions of the burden caring for individuals with dementia created. This imbalance validated that the EHP would be beneficial to use in the planning and implementation processes of program development, specifically for an in-service addressing quality of life of individuals with dementia residing in long-term care. By participating in the in-service, the staff and therapists reduced the imbalance and as a result, improved their perceptions of the importance of quality of life, caring for individuals with dementia, and overall occupational performance. QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 10 Needs Assessment Screening According to Hinojosa and Kramer (2014), screening is the process of analyzing relevant data gathered through observation or pre-assessment tools and determining if additional assessment is required. The screening process is an important first step in determining what evaluations are necessary, which contributed to a successful and rewarding intervention. Initially, the DCE student met with Rebecca Cochran, a Certified Occupational Therapy Assistant (COTA) and Senior Supervisor of the University Heights Health and Living facility in Indianapolis, Indiana. During the meeting, Rebecca gave the DCE student a brief background of the CarDon facility, Lifespan therapy, as well as a description of her own background and interest in working with older adults in the long-term care setting. The DCE student was given a tour of the facility, and the opportunity to ask Rebecca questions through a semi-structured interview about the day-to-day operations of the therapy department, including strengths and weaknesses. Rebecca noted the potential for program development, advocacy, and education for therapists and other staff members on the needs and quality of life for individuals with dementia. The DCE student also met with Tricia Holmes, an occupational therapist and lead advocate for the future dementia staging program at the University Heights Health and Living facility. During the encounter, Tricia explained her personal background and interest in working with individuals with dementia. Tricia introduced the facilitys current dementia staging program, shared thoughts on how it could be improved and offered ideas for future development and implementation. This led to a discussion on the barriers impeding successful implementation of this program, including lack of staff support and limited staff education on dementia and the importance of a staging program. Over the course of a week, the DCE student QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 11 held discussions with other various members of management within this facility. Clinical observations were also performed within a meeting of upper management personnel regarding the future of a dementia staging program at the site. A project idea utilizing the services of the student, which would be beneficial to the facility and their future goals, then evolved. Ultimately, Rebecca and Tricia expressed the need for an educational program to promote and aid in the transition of utilizing a dementia staging program. Evaluation Hinojosa and Kramer (2014) acknowledge evaluation is completed through an extensive process of collecting and defining pertinent data in order to holistically understand the client. Considering that the EHP, especially the person-context-task transaction, is the framework for this project, it was crucial to consider the clients feelings and beliefs, the interrelationships between the client and their context, and the effect on performance overall (Dunn, Brown, & McGuigan, 1994). After completing a thorough review of the literature and to further assess the specific needs of the client, two surveys were used for staff and therapists to self-report their level of knowledge regarding dementia and quality of life and to rate their satisfaction with their existing knowledge. According to Stein, Rice, and Cutler (2013), surveys are a valuable tool often used when assessing the general knowledge of a population, such as client attitudes and perceptions. The objective data gathered through surveys can serve as a guide for developing workplace strategies or educational programs (Stein, Rice, & Cutler, 2013). The surveys were created by the DCE student and consisted of 12 total questions (See Appendix A). The first part of the surveys included questions regarding staff and therapist perceptions on understanding patient needs, meeting patient needs, and providing quality care. The second part addressed whether the staff and therapists had any previous participation in QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 12 programming for individuals with dementia and requested feedback on past programming or ideas for future programming. Although two separate surveys were utilized when collecting data from therapists and staff, the only difference was the title listed at the top, differentiating them for ease of scoring. Results of Needs Assessment According to Bonnel and Smith (2018), a needs assessment allows one to collect baseline data that may demonstrate a lack of continuity in care and proceed with investigating a means for improvement. A thorough needs assessment was conducted through semi-structured interviews and survey data collection to identify areas of improvement within the facility. The general problem identified during the initial needs assessment interviews was in relation to staff education regarding dementia, quality of life, and the importance of a dementia staging program. A combination of convenience and purposive sampling was used throughout the screening and evaluation phase (Etikan, Musa, & Alkassim, 2016). A total of 27 employees completed the self-report survey, including 11 therapists and 16 nursing staff. The data from the first portion of the survey, consisting of multiple-choice questions, is shown in Table B1. Over 90% of the staff and therapists reported they had adequate knowledge on quality of life. Most of the staff either rated their satisfaction as extremely or very satisfied, and over half of the therapists rated their satisfaction as moderately and slightly satisfied. In regard to possessing adequate knowledge on dementia, nearly 80% of the staff and therapists agreed to some degree. Staff reported a higher degree of satisfaction with their knowledge, whereas therapists reported being less satisfied. Although nearly all the staff and therapists disclosed understanding the day-to-day needs of individuals with dementia, approximately one-third of therapists and staff expressed job duties, such as documentation, negatively impacted their ability to meet patient needs and provide QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 13 quality care. Nearly 70% of staff and therapists surveyed agreed to some degree of having adequate knowledge for addressing challenging behaviors. The second portion of the survey contained open-ended questions requesting feedback for dementia staging programs utilized in the past and suggestions for future programming. The data collected from the open-ended questions was used to conduct an analysis on the strengths, weaknesses, opportunities and threats, often referred to as a SWOT analysis, and is shown in Table B2 (Bonnel & Smith, 2018). Bonnel and Smith (2018) disclosed that using a SWOT analysis can provide direction when outlining a clinical problem and allows for a better understanding of both positive and negative aspects. Despite the positive ratings of the multiple choice previously noted, many weaknesses and threats were documented in the open-ended questions. Overall, a lack of staff knowledge, education, and willingness to participate were frequently mentioned, along with increased time consumption. Recruitment of participants did not occur specifically, as it was pre-determined by the education coordinator that this educational series will be mandatory for all employees. Participants of the educational program included all staff and therapists actively engaging in patient care to any extent. The educational in-service was held at various times over the course of a week and tentatively began week nine of the doctoral capstone experience. Outcome Measures The Goal Attainment Scale (GAS) was utilized to appraise whether or not the overall goals of the DCE were met (See Appendix C). The GAS applies goal writing to determine the level of attainment through anticipated outcomes and numerical ratings (Turner-Stokes, 2009). At the time of the DCE students arrival, there were no resources and no educational in-service programs being implemented. This level was rated as a -2, implying that it was much less than QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 14 expected. The next level was rated as -1, which amounts to less than expected. For this level, a resource and educational in-service would be provided by the DCE student that does not quite meet the expectations of the facility. The expected level of achievement was rated as 0, which was the level of the most likely outcome. The student would provide a resource and educational in-service that meets the expectation of the facility. The next level was rated as +1, which represented a level that equates to more than expected by the facility. The last level was rated as +2, which was the highest achievable level and was equivalent to much more than expected by the facility. The DCE student aimed to meet the expected level of outcome, however any positive rating would be acceptable. The DCE student collaborated with the site mentor to determine if the goal was met at the conclusion of the DCE. To assess the effectiveness of the educational program, a pre and post-test survey was created for participants to complete at the beginning and end of the educational in-service. The survey consisted of questions rated on a 5-point Likert scale, ranging from strongly agree to strongly disagree, similar to the needs assessment surveys. The questions assessed whether the participants experienced an improvement in their knowledge and their satisfaction with their knowledge. There was also a comments section for participants to request further clarification for the next session on key points discussed during the current session. This questionnaire was created under the supervision of the site mentor and faculty mentor to ensure all questions were appropriate and fitting. The goal was for participants to gain knowledge and express satisfaction with the educational in-service presentation. Compare and Contrast Areas of Occupational Therapy Within the occupational therapy (OT) profession, the objective of the screening and evaluation phases is to acquire important information about the client in order to create a client- QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 15 centered intervention (Hinojosa & Kramer, 2014). Various assessments can be used during the process of screening and evaluation that are often specific to a particular population, such as caregivers of individuals with dementia, or practice settings, such as acute care or long-term care. Martin, Gillies, Coker, Pizzacalla, Montemuro, Suva, and McLelland (2016), directed research on an educational intervention for staff in an acute care setting within Ontario, Canada. Researchers identified that caregivers within the acute care setting lack knowledge and confidence for implementing client-centered interventions when working with individuals with dementia, similar to the supporting literature for long-term care facilities (Butcher, 2018; Garcia et al., 2012; Martin et al, 2016). However, the researchers utilized a standardized educational program composed of literature-driven and evidence-based practice concepts, whereas the DCE student did not utilize a standardized approach (Martin et al., 2016). The program within the study was divided into 4 modules with a focus on one module each session, which is similar to the program at University Heights Health and Living facility. The program implemented within the acute care setting included interactive learning exercises completed in small groups, case studies, and video scenarios, whereas the program at the University Heights Health and Living facility will incorporate educational case studies of current residents and descriptive handouts for future reference (Martin et al., 2016). Furthermore, acute care settings are often large, as evidenced by the researchers recruiting a total of 468 participants in the intervention group alone; however, with a small long-term care facility no more than 100 participants are anticipated despite the mandatory status of this program (Martin et al., 2016). Implementation The educational in-service program at University Heights Health and Living Community, led by the DCE student, was held during week 9 of the DCE. The educational in-service was QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 16 advertised on flyers that were displayed in common employee areas, as well as spread by word of mouth. Therapy and nursing directors also required the in-service as a mandatory event for all staff. The DCE student held the educational in-service at five different times over the course of a three-day period to ensure employees from all shifts were able to attend at least one of the sessions. Participants attended one 45-minute session which consisted of a pre-survey, an educational PowerPoint presentation, and a post-survey. After comprehensively reviewing the results of the needs assessment, three topics were chosen to be incorporated within the session, including dementia, quality of life, and dementia staging programming. At the beginning of the session, participants completed the pre-survey (See Appendix D) consisting of 3 questions asking participants to rate their knowledge on dementia, quality of life, and dementia staging programming. The pre-survey consisted of 2 additional questions asking the participants to rate their confidence in providing care to individuals with dementia, and to provide any supplemental comments. As an introduction to the PowerPoint presentation and to build rapport with participants, the DCE student explained her role as an OT student and offered insight to her personal passion and experience supporting the creation of the educational program as her DCE project. Next, the objectives and goals of the in-service were outlined to further establish the DCE students purpose. The program presentation (See Appendix E) content was developed through analyzing and synthesizing information gathered from textbooks and evidence-based literature. At the conclusion of the program presentation, the post-survey was administered to all participants. The post-survey (See Appendix F) consisted of the same content included in the pre-survey, as well as additional questions asking participants to rate aspects of the presentation and presenter overall. The data collected from both the pre and post surveys QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 17 provided the DCE student with feedback to measure effectiveness of the educational program. Participants were asked to turn-in both surveys anonymously at the conclusion of the session. In addition to the educational in-service, the DCE student created a handout for all participants. The handout included content from the program presentation on dementia and was developed utilizing evidence-based literature. Content within the handout was organized in a sequential manner to follow the progression of dementia and contained a bullet-point list of key details and considerations. The handout was offered to all participants when exiting the meeting room at the conclusion of the session. Leadership Skills and Staff Development The DCE student demonstrated various aspects of leadership, throughout the development and implementation phases of the educational program, resulting in a successful effective in-service. While developing the educational program, the DCE student utilized effective communication and exhibited confidence when advocating for the in-service and the resulting quality of life benefits for individuals with dementia. The DCE student demonstrated initiative while scheduling and attending meetings with the staff development coordinator, therapy supervisor, and other various management personnel, which led to the creation of the educational in-service. The DCE student also participated in many discussions with an occupational therapist about key information to include within the in-service regarding dementia and quality of life of individuals residing in long-term care. Over the course of the implementation phase, the DCE student exhibited self-confidence as it was imperative for clearly and effectively presenting to the certified and licensed professionals. The DCE student was also enthusiastic, confident, and personable when interacting with the participants throughout each session. The DCE student exhibited QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 18 professional behaviors by adhering to ethical standards and promoting values such as trust and acceptance from therapists and staff. To advocate for the role of occupational therapy, specifically in the care of individuals with dementia, a handout with an overview of the completed program was created for staff and therapists. The DCE student also attended the staffing and clinical meetings each morning to advocate for the role of OT regarding fall interventions and dementia staging interventions for individuals with dementia. Through this process, the DCE student provided ideas, including cognitive assessments or positioning evaluations, and received feedback from nursing, which resulted in the promotion of interdisciplinary care. Numerous professionals, including those within a skilled nursing facility, do not thoroughly recognize or understand the positive and beneficial role of OT. Therefore, educational programming, such as in-services, are critical to ensure quality care is provided to patients through interdisciplinary collaboration. The in-service promoted and encouraged staff development by educating staff on topics to improve the quality of care and quality of life of individuals with dementia. The literature review and needs assessment results demonstrated a lack of staff knowledge on dementia and quality of life, specifically in the long-term care setting. By implementing this educational in-service, the DCE student aimed to increase staff knowledge, as well as to promote the implementation of a dementia staging program within the facilitys memory care unit. This educational program will continue to be utilized to educate staff and therapists on dementia, quality of life and dementia staging programming beyond the time of the DCE students doctoral capstone efforts. QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 19 Discontinuation Outcomes Throughout the progression of the in-service sessions, obstacles occurred and the DCE student made appropriate adjustments. No one attended the first session despite the mandatory directive. Even with encouragement and explanation from the DCE student, some staff did not understand the purpose and importance of the educational program. Therefore, the DCE student adapted her approach to better accommodate staff through establishing rapport and ensuring participants were set up for success. For sessions two through five, a total of 11 therapists and 24 nursing staff attended. The DCE student shared her purpose as a DCE student and expressed her personal passion for individuals with dementia. This strategy aided in rapport building and allowed participants to better understand the purpose of the educational program. Participants appeared to be receptive to this strategy as evidenced by increased eye contact and friendly facial expressions. At the conclusion of each session, most participants expressed interest in the handout by communicating they would use it as a reference when caring for individuals with dementia. Overall, a few challenges emerged over the course of the three-day period in which the sessions occurred. The therapists who participated were receptive to the educational program and a good discussion occurred with two individuals after the session concluded. However, some of the nursing staff who participated were less receptive to the information and expressed displeasure with the mandatory attendance. The DCE student was cognizant when these instances ensued and attempted to remediate this outlook by adjusting the length of the in-service slightly to ensure each session was effective and met the needs of the participants. The DCE student provided holistic care to the participants through adapting the in-service to their needs, QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 20 which is a technique frequently used within the OT profession. In addition to exhibiting appreciation and respect for participant feedback, the DCE student established quality improvement by welcoming questions and feedback after the in-service presentation. The GAS was utilized to appraise the outcome of the overall goals of the DCE, including the educational in-service and handout (See Appendix C). All goals were initiated at a level of 2, which was prior to the DCE student beginning her project. As the DCE progressed, the goal levels increased as the DCE student reached the level of attainment, as explained below. The first goal consisted of providing an educational in-service that met the expectations of the facility. The more than expected level of outcome (+1) was met at the completion of the DCE. The second goal consisted of creating an educational resource that met the expectations of the facility. The more than expected level of outcome (+1) was met for this goal as well. The positive rating for each goal were acceptable and provided support for continuing the educational program and hosting another DCE student to assist with further development of the newly created program. A total of 35 employees completed the pre and post surveys, including 24 nursing staff and 11 therapists. The pre-survey (see Appendix D) was completed by the participants prior to the educational PowerPoint presentation to assess their knowledge on dementia, quality of life, and dementia staging programming, as well as to capture their self-perceived confidence regarding care for individuals with dementia. The data from the pre-survey is displayed in Figures G1 and G2. The participants rated their knowledge on a scale from one, representing no knowledge, to ten, representing exceptional knowledge. Similar to the results of the needs assessment, nearly all therapists and nursing staff rated their knowledge on dementia and quality of life as adequate, with staff scores averaging 7 and 8 respectively, and therapists scores QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 21 averaging 6.5 and 7.8 respectively. In regard to knowledge on dementia staging programming, nursing staff rated their knowledge as adequate with an average numerical rating of 6.5. However, therapists rated their knowledge on dementia staging lower, with an average numerical rating of 5.9. Staff reported a higher degree of confidence with providing care for individuals with dementia with an average score of 8, whereas therapists rated their confidence with an average score of 7.8. The post-survey (see Appendix F) was administered to participants at the conclusion of the educational PowerPoint. The data from the post-survey is displayed in Figures G1 and G2. Overall, staff and therapist self-report ratings on their knowledge regarding dementia, quality of life and dementia staging improved after participating in the educational program (See Figure G3). Both therapists and staff ratings of their self-perceived confidence with providing care for individuals with dementia increased as well. Also, most of the participants rated the educational in-service as good or excellent (See Figure G4). Finally, the DCE student thoroughly reviewed all surveys and concluded that the educational program was successful and a beneficial experience for the participants, as evidenced by majority of the participants rating the educational in-service as good or excellent. Societal Needs and Sustainability Nearly half of individuals residing in long-term care facilities possess a diagnosis of dementia (Crespo et al., 2013; Harris-Kojetin et al., 2016; Moyle et al., 2015). Individuals with dementia are a vulnerable population and are at an increased risk for experiencing loneliness, isolation and a decreased quality of life (Moyle et al., 2015). Therefore, cultivating and preserving the quality of life of individuals with dementia through the promotion of well-being is critical (Klapwijk et al., 2016; Moyle et al., 2015). Promoting the well-being of individuals with QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 22 dementia occurs through providing a level of care that preserves their level of independence respective to an individuals experienced stage of disease progression (Dooley & Hinojosa, 2004; Moyle et al., 2015). Encouraging individuals with dementia to actively engage in daily activities, such as self-care, social participation and leisure, can improve an individuals mood resulting in an increased quality of life (Beerens et al., 2016; Dooley & Hinojosa, 2004; Moyle et al., 2015). Long-term care facilities often have limited resources for staff members to utilize when providing care, hindering their ability to promote the well-being of their patients (Garcia et al., 2012; Watt & Konnert, 2007). However, caregivers often complete tasks or make decisions for individuals with dementia out of convenience, diminishing the level of independence experienced by the individual with dementia. This also demonstrates staff lacks adequate preparation, including education, to care for these individuals (Butcher, 2018; Garcia et al., 2012; Moyle et al., 2015). The educational program met the societal need of lack of staff education and increased preparedness by educating staff about the progression of dementia, the importance of quality of life, and discussing their role in the implementation of a dementia staging program. Research indicates that caregivers with limited knowledge can experience significant emotional strain and consequently negatively influence the quality of life of individuals with dementia (Butcher, 2018; Dooley & Hinojosa, 2004). Improving caregivers understanding of dementia and quality of life was the main goal of the educational program. The DCE student also hoped the educational program would serve as the initiation to the first phase of the dementia staging program, which would result in an overall increased quality of life for individuals with dementia within the facility. QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 23 Occupational therapy practitioners are plentiful in the long-term care setting, creating an opportunity for a smooth transition for sustaining the educational program. In order to promote sustainability of the educational program, the DCE student established rapport with the lead OT and speech therapist (ST) spearheading the dementia staging program, as well as the staff development coordinator (SDC) who oversees new hire orientation and staff in-servicing. The DCE student compiled all resources into a google drive folder, which included the PowerPoint presentation, educational handouts, pre and post surveys, as well as an outline including topics for future modules to ensure sustainability of the program after the discontinuation of the DCE. The DCE student shared the folder with the OT, ST, SDC and site mentor to utilize moving forward. The DCE student also shared the anonymous feedback from participants regarding topics and questions they would like more information on for increased success with the continuation of the program. Additionally, the DCE student worked on creating additional handouts for staff that includes strategies for caregiving approaches broken down by each level of dementia. The DCE student advocated to management staff for the role of OT within the memory care unit, including collaboration with nursing for fall and dementia staging interventions for individuals with dementia. Leadership and Advocacy Over the course of the DCE, the DCE student delved into program development and administration. The educational program generated positive outcomes for not only the participants, but also the facility to further progress their dementia staging program. The DCE student advocated for the role of OT in caring for individuals with dementia. The participants expressed a growth in knowledge of dementia, quality of life, and dementia staging programming as evidenced by the pre and post-survey responses. QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 24 The DCE student had numerous opportunities to engage in administrative duties, including but not limited to, attending meetings, running reports, and scheduling screenings. The DCE student also had the opportunity to independently prepare and lead an insurance meeting. Any issues or concerns that arose throughout the insurance meeting were addressed in a timely manner and reported to the site mentor. The DCE student also advocated for OT to provide an in-depth OT assessment for dementia staging to clinically and objectively determine whether a resident should reside within the locked memory care unit or if transitioning off the unit would be a safer option. The director of nursing, assistant director of nursing, and assistant executive director of the facility were extremely pleased and expressed interest in continuing to utilize therapy collaboration with all individuals, but more specifically individuals with dementia. The DCE student also received positive feedback from the OT and site mentor regarding this instance of advocacy. Over the course of the DCE, the DCE student utilized professional communication when interacting with residents, staff, therapists, and other healthcare professionals. Assorted methods of communication were utilized, including text messages, phone calls, emails, and face to face conversation. Effective communication between associated individuals positively influenced the valuable outcomes of the DCE. After personally experiencing the benefits of the educational program, the DCE student has a comprehensive understanding and appreciation for program development within long-term care facilities. The DCE students knowledge of dementia and quality of life has grown significantly and has prompted effective interactions and interventions to be provided to individuals with dementia. Throughout the creation and implementation of the educational program, the DCE student recognized a need for education on dementia and quality of life, as QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 25 well as implementation of dementia staging programming. Furthermore, it is essential to continue to educate staff and therapists on dementia and quality of life in long-term care facilities, as individuals with dementia are a vulnerable population. Occupational therapists are licensed professionals with adequate training to provide education to staff and other therapists to advocate for improved quality of care for patients. At the conclusion of this DCE, the DCE student hoped that other professionals and long-term care facilities will discern the benefits of program development for staff and individuals with dementia. QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 26 References Alzheimers Association. (2018). Alzheimers disease facts and figures. Alzheimers & Dementia, 14(3), 367-426. Beerens, H. C., de Boer, B. Zwakhalen, S. M. G., Tan, F. E. S., Ruwaard, D., Hamers, J. P. H., & Verbeek, H. (2016). The association between aspects of daily life and quality of life of people with dementia living in long-term care facilities: A momentary assessment study. International Psychogeriatrics, 28(8), 1323-1331. Bonnel, W., & Smith, K. V. (2018). Proposal writing for clinical nursing and DNP projects, Second edition. New York: Springer Publishing Company. Butcher, L. (2018). Caring for patients with dementia in the acute care setting. British Journal of Nursing, 27(7), 358-362. Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Crespo, M., Hornillos, C., & de Quirs, M. B. (2013). Factors associated with quality of life in dementia patients in long-term care. International Psychogeriatrics, 25(4), 577-585. Dooley, N. R., & Hinojosa, J. (2004). Improving quality of life for persons with alzheimers disease and their family caregivers: Brief occupational therapy intervention. American Journal of Occupational Therapy, 58(5), 561-589. Dunn, W., Brown, C., & McGuigan, A. (1994). The ecology of human performance: A framework for considering the effect of context. American Journal of Occupational Therapy, 48(7), 595-607. Etikan, I., Musa, S. A., & Alkassim, R. S. (2016). Comparison of convenience sampling and purposive sampling. American Journal of Theoretical and Applied Statistics, 5(1), 1-4. QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 27 Garcia, L. J., Hbert, M., Kozak, J., Sncal, I., Slaughter, S. E., Aminzadeh, F., Eliasziw, M. (2012). Perceptions of family and staff on the role of the environment in long-term care homes for people with dementia. International Psychogeriatrics, 24(5), 753-765. Harris-Kojetin, L., Sengupta, M., Park-Lee, E., Valverde, R., Caffrey, C., Rome, V., & Lendon, J. (2016). Long-term care providers and services users in the united states: Data form the national study of long-term care providers, 2013-2014. Vital & Health Statistics. Series 3, Analytical and Epidemiological Studies, (38), x Hinojosa, J., & Kramer, P. (2014). Evaluation in occupational therapy: Obtaining and interpreting data (4th ed.). American Occupational Therapy Association, Incorporated Kane, R. A., Kling, K. C., Bershadsky, B., Kane, R. L., Giles, K., Degenholtz, H. B., Cutler, L. J. (2003). Quality of life measures for nursing home residents. The Journals of Gerontology: Series A: Biological Sciences and Medical Sciences, 58(3), 240-248. Klapwijk, M. S., Caljouw, M. A. A., Pieper, M. J. C., van der Steen, J. T., & Achterberg, W. P. (2016). Characteristics associated with quality of life in long-term care residents with dementia: A cross-sectional study. Dementia & Geriatric Cognitive Disorders, 42(3/4), 186-197. Lee, C. Y., Cheng, S. J., Lin H. C., Liao, Y. L., & Chen, P. H. (2018). Quality of life in patients with dementia with lewy bodies. Behavioural Neurology, 2018. Maki, Y., & Endo, H. (2018). The contribution of occupational therapy to building a dementia positive community. British Journal of Occupational Therapy, 81(10), 566-570. Martin, L S., Gillies, L., Coker, E., Pizzacalla, A., Montemuro, M., Suva, G., & McLelland V. (2016). An education intervention to enhance staff self-efficacy to provide dementia care QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 28 in an acute care hospital in Canada: A nonrandomized controlled study. American Journal of Alzheimers Disease and Other Dementias, 31(8), 664-677. Moyle, W., Fetherstonhaugh, D., Greben, M., & Beattie, E. (2015). Influencers on quality of life as reported by people living with dementia in long-term care: A descriptive exploratory approach. BMC Geriatrics, 15(1), 50. Naylor, M. D., Hirschman, K. B., Hanlon, A. L., Abbott, K. M., Bowles, K. H., Foust, J., ... & Zubritsky, C. (2016). Factors associated with changes in perceived quality of life among elderly recipients of long-term services and supports. Journal of the American Medical Directors Association, 17(1), 44-52. Ojagbemi, A., & Owolabi, M. (2017). Do occupational therapy interventions improve quality of life in persons with dementia? A meta-analysis with implications for future directions. Psychogeriatrics: The Official Journal of the Japanese Psychogeriatric Society, 17(2), 133-141. Stein, F., Rice M. S., & Cutler, S. K. (2013). Clinical research in occupational therapy (5th ed.). Clifton Park, NY: Delmar. Turner-Stokes, L. (2009). Goal attainment scaling (GAS) in rehabilitation: a practical guide. Clinical Rehabilitation, 23(4), 362-370. Watt, A., & Konnert, C. (2007). Quality of life in the nursing home: Perspectives of younger and older residents. Canadian Journal on Aging, 26(4), 403-410. World Health Organization (2017, December 12). Dementia. Retrieved from https://www.who.int/news-room/fact-sheets/detail/dementia QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 29 Appendix A Staff Interview Questions How would you rate your knowledge and understanding of quality of life? o Do you feel your knowledge of quality of life is adequate enough to provide the best quality care to the residents? Strongly agree Agree Neither agree or disagree Disagree Strongly Disagree o How satisfied are you with this? Extremely satisfied Very satisfied Moderately satisfied Slightly satisfied Not satisfied How would you rate your knowledge and familiarity with dementia? o Do you feel your knowledge of dementia is adequate enough to provide the best quality of care to individuals with this condition? Strongly agree Agree Neither agree or disagree Disagree Strongly disagree o How satisfied are you with this? Extremely satisfied Very satisfied Moderately satisfied Slightly satisfied Not satisfied With the amount of documentation, I have to complete on a daily basis, I feel that I am able to keep up with meeting patient needs and provide quality care? o Strongly agree o Agree o Neither agree or disagree o Disagree o Strongly disagree When interacting with the residents, I feel that I have adequate knowledge on the day to day needs of individuals with dementia. o Strongly agree o Agree o Either agree or disagree o Disagree o Strongly disagree QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 30 When challenging behaviors arise from residents, I feel that I am adequately prepared for how to handle these situations. o Strongly agree o Agree o Neither agree or disagree o Disagree o Strongly disagree In regard to dementia programming within this building, have you been a part of any type of it? o Yes o No If so, was it helpful? If not, what made it unhelpful? In the future, a therapist will have developed a dementia staging program to implement when working with individuals with dementia. What are your biggest concerns in relation to this? o If you were provided individualized intervention plans for each resident outlining their stage of dementia and recommendations for approaches to ADLs, activities and etc., do you think this would be helpful and improve the quality of care provided? Strongly agree Agree Either agree or disagree Disagree Strongly disagree If you were to design a dementia staging program to promote and improve the quality of life of individuals, what do you think is important to include? What barriers or threats do you perceive with establishing and implementing a new program? QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 31 Therapist Interview Questions How would you rate your knowledge and understanding of quality of life? o Do you feel your knowledge of quality of life is adequate enough to provide the best quality care to the residents? Strongly agree Agree Neither agree or disagree Disagree Strongly Disagree o How satisfied are you with this? Extremely satisfied Very satisfied Moderately satisfied Slightly satisfied Not satisfied How would you rate your knowledge and understanding of dementia? o Do you feel your knowledge of dementia is adequate enough to provide the best quality of care to individuals with this condition? Strongly agree Agree Neither agree or disagree Disagree Strongly Disagree o How satisfied are you with this? Extremely satisfied Very satisfied Moderately satisfied Slightly satisfied Not satisfied With the amount of documentation, I have to complete on a daily basis, I feel that I am able to keep up with meeting patient needs and provide quality care? o Strongly agree o Agree o Neither agree or disagree o Disagree o Strongly disagree When interacting with the residents, I feel that I have adequate knowledge on the day to day needs of individuals with dementia. o Strongly agree o Agree o Either agree or disagree o Disagree o Strongly disagree QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 32 When challenging behaviors arise from residents, I feel that I am adequately prepared for how to handle these situations. o Strongly agree o Agree o Neither agree or disagree o Disagree o Strongly disagree In regard to dementia programming within this building, have you been a part of any type of it? Yes No o If so, was it helpful? o If not, what made it unhelpful? In the future, a therapist will have developed a dementia staging program to implement when working with individuals with dementia. What are your biggest concerns in relation to this? o If you were provided individualized intervention plans for each resident outlining their stage of dementia and recommendations for approaches to ADLs, activities and etc., do you think this would be helpful and improve the quality of care provided? Strongly agree Agree Either agree or disagree Disagree Strongly disagree If you were to design a dementia staging program to promote and improve the quality of life of individuals, what do you think is important to include? What barriers or threats do you perceive with establishing and implementing a new program? QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 33 Appendix B Table B1 Quantitative Data from Survey Responses Question Do you feel your knowledge of quality of life is adequate enough to provide the best quality care to the residents? How satisfied are you with this? Do you feel your knowledge of dementia is adequate enough to provide the best quality of care to individuals with this condition? How satisfied are you with this? With the amount of documentation, I have to complete on a daily basis, I feel that I am able to keep up with meeting patient needs and provide quality care. When interacting with the residents, I feel that I have adequate knowledge on the day to day needs of individuals with dementia. When challenging behaviors arise from residents, I feel that I am adequately prepared for how to handle these situations. Therapist Response Tally (3) Strongly agree (7) Agree (1) Neither agree or disagree (0) Disagree (0) Strongly disagree (0) Extremely satisfied (5) Very satisfied (4) Moderately satisfied (2) Slightly satisfied (0) Not satisfied (3) Strongly agree (5) Agree (3) Neither agree or disagree (0) Disagree (0) Strongly disagree (0) Extremely satisfied (6) Very satisfied (2) Moderately satisfied (2) Slightly satisfied (1) Not satisfied (1) Strongly agree (5) Agree (1) Neither agree or disagree (4) Disagree (0) Strongly disagree Staff Response Tally (10) Strongly agree (5) Agree (0) Neither agree or disagree (0) Disagree (1) Strongly disagree (5) Extremely satisfied (8) Very satisfied (1) Moderately satisfied (1) Slightly satisfied (1) Not satisfied (7) Strongly agree (8) Agree (1) Neither agree or disagree (0) Disagree (0) Strongly disagree (7) Extremely satisfied (7) Very satisfied (1) Moderately satisfied (0) Slightly satisfied (1) Not satisfied (8) Strongly agree (3) Agree (1) Neither agree or disagree (2) Disagree (1) Strongly disagree (2) (7) (1) (1) (0) (1) (5) (4) (0) (0) (7) (6) (1) (0) (1) (4) (9) (1) (0) (0) Strongly agree Agree Neither agree or disagree Disagree Strongly disagree Strongly agree Agree Neither agree or disagree Disagree Strongly disagree Strongly agree Agree Neither agree or disagree Disagree Strongly disagree Strongly agree Agree Neither agree or disagree Disagree Strongly disagree QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 34 Table B2 SWOT Analysis Derived from Qualitative Data from Survey Responses Strengths Evidence-based assessment tools Used to create individualized plans for patient care Interdisciplinary approach Current Education Dementia correlated with Staging Relias Program Developed an understanding of patient needs Improved and refreshed understanding of dementia Weaknesses (Internal) Never been implemented successfully within this facility To improve quality of life of individuals with dementia Stages dont necessarily match assessment tools utilized To improve quality of care of individuals with dementia Program is very broadly based on cognition, rather than dementia/ Alzheimers Utilize a multidimensional approach to treatment Lack of staff education on program Quick change caused an increase of behaviors Poor time feasibility for implementation Requires a thorough training; time consuming Opportunities Utilize a dementia-based program Promote a growth of knowledge for staff Threats (External) Potential for increased burden of care/ duties of staff Potential for a period of increased behaviors during transition Lack of staff willingness to try new things and follow through with it Lack of staff support Insufficient staff knowledge on dementia/ quality of life topics Time consuming Difficulty keeping everyone on same page; confusion High turnover rates QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 35 Appendix C Goal Attainment Scale Success Goal 1 Goal 2 Level of Predicted Attainment 0 0 The OTS will provide an educational in-service program to staff and therapists that is extremely satisfactory per the report of the formative assessment results. The OTS will provide a resource for therapists that is extremely satisfactory per the report of the site mentor. The OTS will provide an educational in-service program to staff and therapists that is very satisfactory per the report of the formative assessment results. The OTS will provide a resource for therapists that is very satisfactory per the report of the site mentor. The OTS will provide an educational in-service program to staff and therapists that is satisfactory per the report of the formative assessment results. The OTS will provide a resource for therapists that is satisfactory per the report of the site mentor. The OTS will provide an educational in-service program to staff and therapists that is less than satisfactory per the report of the formative assessment results. The OTS will provide a resource for therapists that is less than satisfactory per the report of the site mentor. The OTS will not provide an educational in-service program to staff and therapists. The OTS will not provide a resource for therapists. Much More Than Expected +2 More Than Expected +1 Most Likely Outcome 0 Less Than Expected -1 Much Less Than Expected -2 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 36 Appendix D Pre-Survey Pre-session Survey: Please complete this portion of the survey prior to the start of the session. 1. Please rate your knowledge of dementia. No knowledge 0 1 2 3 4 5 6 7 8 9 10 Exceptional knowledge 8 9 10 Exceptional knowledge 2. Please rate your knowledge of quality of life. No knowledge 0 1 2 3 4 5 6 7 3. Please rate your knowledge of dementia staging programming. No knowledge 0 1 2 3 4 5 6 7 8 9 10 Exceptional knowledge 4. How confident would you feel providing care to an individual with dementia? No confidence 0 5. Comments: 1 2 3 4 5 6 7 8 9 10 Exceptional confidence QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA Appendix E 37 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 38 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 39 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 40 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 41 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 42 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 43 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 44 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 45 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 46 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 47 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 48 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 49 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 50 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 51 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 52 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 53 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 54 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 55 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 56 Appendix F Post-Survey Post-session Survey: Please complete this portion of the survey at the conclusion of the session. Please turn-in to the presenter before leaving the room. PART A: 1. Please rate your knowledge of dementia. No knowledge 0 1 2 3 4 5 6 7 8 9 10 Exceptional knowledge 8 9 10 Exceptional knowledge 2. Please rate your knowledge of quality of life. No knowledge 0 1 2 3 4 5 6 7 3. Please rate your knowledge of dementia staging programming. No knowledge 0 1 2 3 4 5 6 7 8 9 10 Exceptional knowledge 4. How confidence would you feel providing care to an individual with dementia? No confidence 0 1 2 3 4 5 6 7 8 9 10 Exceptional confidence 5. Overall, how would you rate the educational in-service? [ ] Excellent [ ] Good [ ] Fair [ ] Poor 6. Comments: (what was most helpful, questions or suggestions for improvement) QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 57 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 3 4 5 N/A 2. Learning objectives were met. 1 2 3. Content organized and easy to follow. 1 2 4. Handout was helpful. 1 2 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 4 5 N/A 4 5 N/A 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 3 4. The style of presentation was adequate. 1 2 3 5. The meeting room was adequate and comfortable. 1 2 3 QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 58 Appendix G Figure G1 Therapist Responses (Average) Pre-Survey Post-Srvey 9.3 8 7.8 6.5 Please rate your knowledge of dementia. 7.8 7.8 8.3 5.9 Please rate your knowledge of quality of life. Please rate your How confident knowledge of would you feel dementia staging providing care to programming. an individual with dementa? QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 59 Figure G2 Staff Responses (Average) Pre-Survey 8.6 9.2 8.7 8 7 Please rate your knowledge of dementia. Post-Survey 8 8.7 6.5 Please rate your knowledge of quality of life. Please rate your How confident knowledge of would you feel dementia staging providing care to programming. an individual with dementia? QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 60 Table G3 Quantitative Data from Pre- and Post-Survey Responses Item Please rate your knowledge of dementia. Please rate your knowledge of quality of life. Please rate your knowledge of dementia staging programming. How confident would you feel providing care to an individual with dementia? Therapist Reported % Increase 23.08% Nursing Staff Reported % Increase 22.86% 19.23 % 15% 32.20% 33.85% 6.41% 8.75% QUALITY OF LIFE OF INDIVIDUALS WITH DEMENTIA 61 Figure G4 Overall, how would you rate the educational inservice? 0% 20% 43% Excellent Good Fair 37% Poor  ...

... Running Head: INCORPORATION OF FINE MOTOR ACTIVITIES Implementation of Fine Motor Exercise Programming for Persons with Parkinsons Disease: Occupational Therapys Role Jessica Simmons 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: Brenda S Howard, DHSc, OTR 1 FINE MOTOR ACTIVITIES 2 A Capstone Project Entitled Implementation of Fine Motor Exercise Programming for Persons with Parkinsons Disease: Occupational Therapys Role 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 Jessica Simmons Doctor of Occupational Therapy 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 FINE MOTOR ACTIVITIES 3 Abstract This study examined occupational therapys role in implementation of fine motor activities and fine motor exercises within the Rock Steady Boxing (RSB) exercise program to improve overall fine motor skills and coordination in boxers. The purposes of this study were: 1) To determine the impact of incorporating fine motor activities throughout RSB classes on improving fine motor coordination in persons with PD and, 2) To assess participants perceptions of improvement in fine motor skills and, 3) To educate coaches, boxers, and family members on the use of adaptive equipment throughout boxing classes, the community, and within the home to increase overall independence and quality of life. An educational seminar was held on March 10th, 2019 at Rock Steady Boxing Flagship gym to educate and promote adaptive equipment in order to meet the the third objective of the Doctoral Capstone Experience (DCE). In attempt to expand the literature, an occupational therapy student conducted a pretest-posttest design to compare fine motor coordination before and after 8 weeks of participation in group-based fine motor activities, using the Nine Hole Peg Test (Oxford Grice et al., 2003). A convenience sample was recruited from current RSB participants via email. Participants previous PDQ-39 was used to identify perceived fine motor deficits. Data collection for each participant occurred in a 15 to 30-minute session where the researcher reviewed and obtained informed consent, demographics such as age and gender, and administered the NHPT pre and post the 8-week fine motor activity intervention. Although the difference in means from pre to post NHPT (p=.150) of the right upper extremity did not show statistical significance, the findings of this study suggest that left upper extremity results tended toward significance in difference of means from pre to post NHPT (p=.058). Although both upper extremities did not show statistical significance the study may not have been adequately powered to achieve significance secondary to type II error. FINE MOTOR ACTIVITIES 4 Literature Review and Background Parkinsons disease (PD) is a gradual neurological disorder characterized by a large number of motor and non-motor features that can impact an individual's ability to function as they normally would, prior to the diagnosis (Jankovic, 2008). Persons with PD exhibit progressively worsening neurological symptoms, including speed, flexibility, and coordination of gross and fine motor function, including the extremities, trunk, face, and voice (Suchowersky et al., 2006). More than one million people in the United States are diagnosed with this neurodegenerative disease, typically between 40 to 70 years of age (Baatile, Langbein, Weaver, Maloney, & Jost, 2000). Lack of dopamine causes a chemical imbalance resulting in the symptoms of PD, which ultimately leaves the individual unable to accomplish simple tasks of daily living (Baatile et al., 2000). Research suggests that an exercise routine can raise dopamine levels and metabolism, which consequently increases functional independence in those diagnosed with PD (Sasco, Paffenbarger, Gendre, & Wing, 1992). Boxing training, a nontraditional form of exercise recently implemented for patients with PD, encompasses wholebody movements, with punching motions and footwork in many directions (Combs et al., 2011). Rock Steady Boxing (RSB) is a 501 (c)(3) nonprofit organization that gives people with Parkinsons disease hope by improving their quality of life through a non-contact boxing based fitness curriculum (RSB, 2018). RSB was founded in 2006 by Scott C. Newman, former Marion County (Indiana) Prosecutor, who is living with PD (RSB, 2018). Newman began intense, oneon-one, boxing training a few years after he was diagnosed with PD and noted his quality of life improved tremendously in a short time due to his fighting back against Parkinsons disease (RSB, 2018). The Rock Steady Boxing logo is the Statue of Liberty embellished with a boxing glove. According to Newman, the words inscribed on the Statue of Liberty and the hope FINE MOTOR ACTIVITIES 5 symbolized by her presence at Ellis Island illustrated his dream that RSB would be a beacon of light and hope for those suffering with Parkinsons Disease (RSB, 2018). What started as one mans dream to fight back against Parkinsons has grown to currently consist of 741 RSB programs around the world and continues to grow by adding new members. To date, 37,050 individuals with Parkinsons disease are training with the Rock Steady Boxing program (RSB, 2018). RSB holds group exercise programs every day of the week that focus on whole-body movements, with upper-extremity punching motions and lower-extremity footwork in all directions, balance, agility drills, and strength training. At RSB, the boxers train for optimal agility, muscular endurance, hand-eye coordination, speed, footwork, and total body strength to fight back against their opponent, Parkinsons (RSB, 2018). RSB does not have a fine motor exercise program in place at its flagship location to address fine motor deficits. RSB previously found, through collection of the PDQ-39 for program evaluation (Jenkinson et al., 1997) that the majority of boxers indicate they have experienced fine motor deficits, but RSB was not addressing those deficits consistently throughout workouts. According to Foster, Bedekar, & Tickle-Degnen (2014), To date, the demonstrated effects of physical performance skill interventions for people with PD have been primarily task specific in that improvements in trained skills do not translate to improvements in untrained skills (p. 43). These authors indicate a wider variety of task-specific training was needed in order to improve overall coordination in persons with PD (Foster, Bedekar, & TickleDegen, 2014). A case series conducted by Combs et al. (2011) concluded that the patients in the case series showed short-term and long-term improvements in balance, gait, activities of daily living, and quality of life after attending 24-36 boxing training sessions for a period of 12 weeks (p.141). Activities of daily living (ADLs) are considered to be anything an individual may need FINE MOTOR ACTIVITIES 6 to do, wants to do, or is required to do. Often times ADLs require fine motor skills to be intact in order for independent performance of the task. According to Broderick, Van Gemmert, Shill, & Stelmach (2009), compromised upper extremity function in PD has been connected with deficits in activities of daily living and decreases in quality of life. In a study conducted by Park, Gong, & Yim, stroke patients participated in a sitting boxing program 3x a week for 6 weeks while a control group attended traditional physical therapy for the same period of time (p. 79, 2017). The sitting boxing group showed increases in upper extremity function, balance, walking ability, and quality of life (Park, Gong, & Yim, 2017). A study comparing fine motor coordination abilities of task specific activities before and after training would help fulfill this need. Therefore, the purpose of this Doctoral Capstone Experience (DCE) and research study was to determine the impact of incorporating fine motor activities throughout RSB classes on improving fine motor coordination in persons with PD. A secondary objective was to assess participants perceptions of improvement in fine motor skills. A third objective was to educate coaches, boxers, and family members on the use of adaptive equipment throughout boxing classes, the community, and within the home to increase overall independence and quality of life. The American Occupational Therapy Association (AOTA) (2014) declares occupational performance as the ability to carry out activities of daily life. Furthermore, an area of occupation can be defined as: any activity one performs to fulfill their time and provide one with identity, purpose, meaning, and volition (AOTA, 2014). Individuals with PD often experience decreased occupational performance and difficulty with completion of ADLs as the disease progresses. The Motor Learning frame of reference (FOR) was used throughout the DCE at RSB. This frame is focused on providing guidelines for interventions in regards to restoring functional movement with clients that have a broad range of health conditions (Cole & Tufano, 2008). The FINE MOTOR ACTIVITIES 7 NHPT was used to measure increase in functional movement (Oxford Grice et al., 2003) and a rating scale for perceived fine motor abilities was used to measure boxers perceptions of fine motor capabilities. Change within this FOR consists of learning motor strategies by trial and error at first, and later by practice and refinement of skilled movements resulting in permanent changes (Jarus, 1994). The Person-Environment-Occupation-Performance (PEOP) mode served as the theoretical basis for the Doctoral Capstone Experience (DCE) (Christiansen, Baum, & Bass, 2011). The focus throughout this DCE was to facilitate improvement in an area considered to be dysfunctioning according to the PEOP model, and turn it into functioning. Dysfunction within this model is considered to be a deficit in occupational performance, resulting in a lack of competence (Cole & Tufano, 2008). It was the occupational therapy students (OTS) goal to assess the boxers (person) by using the PDQ-39 (Jenkinsons et al., 1997), previously used for program evaluation at RSB, and the 9 Hole Peg test (NHPT) (Oxford Grice et al., 2003) to identify the areas of dysfunction. The OTS also used a rating scale pre and post intervention to assess perception of fine motor abilities and fine motor coordination activities that the boxers find troublesome. Then, the OTS collaborated with the coaches and RSB staff regarding a change in the exercise program to increase fine motor exercises/activities offered (environment). By the end of the DCE the OTSs planned to increase the boxers ability to participate in meaningful occupations (occupational performance) through increasing task specific fine motor skills. Using the PEOP as a theoretical basis throughout the DCE, the OTS kept interventions and the educational seminar occupation based. The OTS kept exercises and activities focused on what was most important to the boxer and what activities addressed the dysfunctional tasks identified by the boxer by way of the rating scale and NHPT. Function within this model is FINE MOTOR ACTIVITIES 8 considered to be involvement in meaningful occupations while juggling environmental demands (Cole & Tufano, 2008). After a diagnosis of PD, a boxer tends to experience a lack in their occupational performance and difficulty adapting to their environment due to physical setbacks (tremors, stiffness, etc.) (Combs et al., 2011). Using the PEOP was a good fit for this DCE because it allowed the OTS to remain occupation-based and effectively facilitate growth in fine motor dexterity abilities within RSB boxers. Screening and Evaluation To analyze and assess the needs of RSB, it was determined through reviewing literature and comparing screening options that the PEOP situational analysis should be used as the evaluation framework. The PEOP model provides practitioners with a natural and structured way to comprehend the best way to support peoples abilities in order to perform or do the activities, tasks, and roles necessary for everyday life (Christiansen, Baum, & Bass, 2011). Regardless of the setting, types of clients served, age, life stage, or diagnoses the PEOP is a relevant model to be used (Christiansen, Baum, & Bass, 2011). The PEOP situational analysis model was completed by the OTS and two primary stakeholders at RSB to determine the general areas of concern and related occupational issues. The OTS and the stakeholders collaboratively decided upon specific occupational therapy (OT) related questions to look at on the PDQ-39 assessments filled out by each boxer to determine the need for fine motor interventions. After completion of the PEOP situational analysis it was determined that RSB would benefit from implementing fine motor activities throughout all classes to further meet the needs of the boxers that attend RSB (refer to Appendix A for completed PEOP situational analysis). There was a need to implement fine motor activities throughout the classes to improve overall independence and dexterity due to boxers identifying FINE MOTOR ACTIVITIES 9 fine motor activities that they find troublesome. To determine the needs of all boxers, additional evaluations were needed. Further determination of needs was completed through attending RSB meetings, engaging with the boxers and caretakers, presenting boxers with a rating scale regarding fine motor abilities, and additional discussions with the head coaches at RSB. When discussing with RSB stakeholders, the main concerns for the organization were lack of fine motor coordination activities, lack of knowledge regarding adaptive equipment for the boxers, sustainability of fine motor program, and communication between affiliates regarding the fine motor program. After the concerns were identified the OTS determined that there was a match between RSB and what the OT approach could do for their program. The next step in the situational analysis, after a match was identified, was to determine RSBs capabilities and enablers, while identifying barriers and constraints that need to be overcome (refer to Appendix A) (Christiansen, Baum, & Bass, 2011). Paired with a review of the literature and completion of the situational analysis the occupational therapy student and primary stakeholders were able to come to a conclusion regarding what needs to be done at RSB to fill the fine motor coordination gap throughout the boxing classes. Therefore, the purpose of this DCE and research study was to determine the impact of incorporating fine motor activities throughout RSB classes on improving fine motor coordination in persons with PD. An additional objective was to assess participants perceptions of improvement in the fine motor skills. A third objective was to educate coaches, boxers, and family members on the use of adaptive equipment throughout boxing classes, the community, and within the home to increase overall independence and quality of life. The occupational therapy student and stakeholders agreed to complete a pretest-posttest study design to compare fine motor coordination before and after participation in group-based FINE MOTOR ACTIVITIES 10 fine motor activities, using the Nine Hole Peg Test. The primary stakeholders mentioned their main concern was the PD 3 and PD 4 classes secondary to them having the most difficulty with fine motor skills and being in stages 3 through 4 on the Hoehn & Yahr Scale (Modified Hoehn and Yahr Scale, 2012), that groups the progression of the disease. A convenience sample was recruited from current RSB participants via e-mail recruitment from the Indianapolis Headquarters Rock Steady Boxing program. Inclusion criteria for this study comprised: 1) diagnosed with PD or Parkinsonism; 2) rated in the stages 3 through 4 on the Hoehn & Yahr Scale (Modified Hoehn and Yahr Scale, 2012); 3) currently participating in the RSB program; and 4) participants must be between the ages of 21 and 90 years of age. The participants were excluded from the study if they do not return for the posttest. The Nine Hole Peg Test was used to measure fine motor coordination for adults with PD (Earhart et al., 2011). Data were collected during regular class sessions at RSB on February 6, 7, and 8, 2019. The pretest session entailed the participants to first read and sign the Informed Consent Document (ICD) if they wish to participate. Second, the occupational therapy student created a master list to assign participants a number to be used on the pretest/posttest documents to deidentify the documents. Third, participants filled out a brief demographic questionnaire. Fourth, the occupational therapy student tested each participant using the Nine Hole Peg Test according to protocol as outlined by Earhart et al. (2011). Finally, the occupational therapy student used the master list and participants numbers to photocopy and de-identify participants responses on PDQ-39 forms that were previously collected by RSB to identify fine motor difficulties. Throughout the course of 8 weeks, between pretest and posttest, the occupational therapy student incorporated fine motor activities throughout the boxing classes. Fine motor activities incorporated throughout the boxing classes were occupation based and supported by research. FINE MOTOR ACTIVITIES 11 Throughout the posttest session, participants completed the demographic questionnaire with likert scale rating of perceived fine motor abilities. Then the occupational therapy student tested participants again using the Nine Hole Peg Test. Due to Rock Steady Boxing being a community based program and not having a licensed occupational therapist on staff, it was not appropriate throughout this DCE to complete individualized or group occupational therapy evaluations for the boxers. Screening and evaluating RSB as a whole through the lens of OT was appropriate in order to facilitate program planning and implementation of OT based activities to further meet the needs within RSB. Within a traditional OT setting where direct OT services are provided for fine motor deficits/delays, occupational therapists are able to evaluate an individuals ability to perform fine motor activities and their ability to function independently in everyday meaningful occupations. The use of screening and evaluation tools is commonly found in settings where direct care is provided by an OT (Scaffa & Reitz, 2014). OTs are educated on many different assessment tools available in order to determine the most appropriate fit for the population being served and how to best meet their needs (Duggan, Gaston, Barr, Lizcano, & Lannigan, 2016). Within the community based settings, including RSB, the evaluation process differs compared to direct care services. Therefore, the occupational therapy student completed a needs assessment with RSB and its stakeholders rather than a formal evaluation. Completion of a needs assessment provides the opportunity to gain new data to help clarify a problem or help generate evidence about gaps in practices that currently exist (Bonnel & Smith, 2018, p. 142). Implementation There are three defined service provision models used by occupational therapists: direct, monitoring, and consultation (Dunn, 1988). The monitoring service model was the primary FINE MOTOR ACTIVITIES 12 model used to guide this DCE project in order to focus on the identified needs. The needs assessment at RSB indicated the need for fine motor implementation, assistive device education, and incorporation of occupational therapy in the screening process. The head coaches and the OTS collaborated to determine programs and projects that best fit the needs of the facility. Fine Motor Implementation A main concern voiced by the head coaches was the lack of fine motor/ manual dexterity exercises implemented throughout the program determined by the review of PDQ-39 scores for project evaluation. According to Foster, Bedekar, & Tickle-Degnen (2014), findings suggested physical activity could result in improvement or maintenance in physical performance skills in individuals with PD and are likely to develop new performance skills through task specific training (p. 43). Appendix B includes all the task specific fine motor activities completed throughout the 8-week study. This 8-week study required participants to attend at least 2 RSB classes a week and participate in a fine motor activity for an average of 5-10 minutes each class. The OTS requested verbal feedback from boxers during week 3 of the implementation phase and received positive feedback from boxers that they felt the fine motor activities were important and helping them gain strength as well as confidence in their fine motor abilities. In addition to the 8week fine motor activities, the OTS created a fine motor resource binder. The binder included a list of materials needed to complete all activities, the purpose of the activities, and possible ways to adapt the activity if needed. A culmination of videos that includes all fine motor activities and instructions was created and posted on RSB Forum page in order for all other RSB affiliates to view. Educational Seminar FINE MOTOR ACTIVITIES 13 Increasing education regarding adaptive and assistive devices was of great priority to the boxers and coaches at Rock Steady Boxing. In order to address this need, the OTS reached out to several assistive device manufacturing companies asking if they would be willing to send a sales representative to RSB to give a presentation on equipment they offer. The OTS also requested the company educate the boxers on assistive devices that may be beneficial to them in their journey of maintaining independence while living with PD. North Coast Medical (NORCO) agreed to donate around fifteen assistive devices to RSB for the educational seminar hosted by the occupational therapy student on March 10 , 2019 at Rock Steady Boxing Flagship Gym. th NORCO was unable to send a sales representative therefore the OTS presented the assistive devices to the attending boxers while educating them on the devices. NORCO agreed to facilitate a webinar during the educational seminar in order for boxers to ask a sales representative questions regarding equipment and pricing of NORCO equipment. The OTS wrote a paragraph explaining the purpose of the educational seminar and posted the information as recruitment at the front desk for all boxers to read and sign up. The seminar was structured in a way that allowed the OTS to educate the boxers and their caretakers on the adaptive equipment, time for the boxers to share what ADLs they struggle with and receive feedback from other boxers, allowed time for boxers and caretakers to ask the OTS any questions regarding OT and/or any adaptive equipment questions, and allowed time for the boxers to get a hands on experience with the assistive devices. The OTS created educational handouts for each assistive device discussed at the seminar as another avenue to educate boxers on the devices presented. The educational handouts included information regarding what the device is, how it will assist the boxer, where it can be purchased, and the cost of the device. For purposes of sustainability of the educational seminars the OTS gave the head coach at RSB NORCOs contact information to facilitate a FINE MOTOR ACTIVITIES 14 relationship between the two for future needs of RSB regarding adaptive equipment. RSB plans to host at least one assistive device seminar every other month as well as sharing NORCOs information with other RSB affiliates on the RSB Facebook Forum to further educate coaches and boxers on assistive devices. NORCO also agreed to give RSB 25% of all sales made at the seminar, if RSB were interested. To assure the educational seminar met the needs of those who attended the OTS created a feedback survey for those who attended to fill out (refer to Appendix C). Hosting the educational seminar allowed the OTS to advocate for OTs role in this community based setting. It was also a time for the OTS to increase awareness and education on adaptive equipment available. Inclusion of Occupational Therapist in Quarterly Physical Therapy Screening Process RSB holds physical therapy (PT) screenings every quarter for boxers. PT screenings are held at RSB Flagship Gym in order to give boxers the opportunity to seek medical advice from volunteers who are licensed physical therapists regarding change in status, newly identified deficits, and aches/pains. The RSB coaches expressed that they have been wanting to include occupational therapy to the PT screenings for awhile but were unsure of what role OT would hold in the process. The OTS observed PT screenings and noted the need for OTs holistic approach to be incorporated throughout the PT screening process. The OTS contacted a former University of Indianapolis OT alumni that works with the current PT volunteers at Community Health Neuro Specialty Clinic, and asked if she would be willing to volunteer her time and expertise to the boxers here at RSB. The OTS received Kristins contact information from Stephanie Combs-Miller, a neuroscience physical therapist, who volunteers her time and knowledge of research to RSB. Kristin agreed to see boxers for the scheduled April 6 PT th screening. The OTS and OT collaborated on screening and implementation ideas that would fit FINE MOTOR ACTIVITIES 15 best with RSB screening process. The OTS educated RSB staff on the importance and benefit of maintaining inclusion of OT services in the PT screening process in order to facilitate holistic treatment. Discontinuation and Outcomes The main focus of this DCE and project was program evaluation and providing education with hopes to improve fine motor skills, educational resources, and inclusion of occupational therapy in the established screening process at RSB. After the needs were defined and a literature review was completed it was determined that creation of a fine motor protocol for the gym, continuous educational seminars, and indefinite inclusion of occupational therapy services throughout the screening process could fulfill the goals of the DCE project and needs of RSB. For purposes of sustainability and quality improvement (QI) following the completion of the DCE, the OTS and site mentor planned accordingly to ensure the identified needs at RSB would continuously be met. According to Bonnel and Smith (2018), QI is an ongoing effort to address and document outcomes to improve the health of the community (p.46). QI is an ongoing process that involves multiple components such as evaluating and reflecting, teamwork, responding to changing needs, and receiving feedback (Bonnel and Smith, 2018). Outcome measures are an intricate part of quality improvement for they allow one to assess the effectiveness and benefits of the programs as well as help identify challenges and means for improvement. To address QI and ensure improved practice, creating and completing an outcome analysis for the different implemented projects was necessary. To provide the best fit for the needs of the population being served completion of outcome measures was necessary to allow identification of appropriate modifications. Fine Motor Implementation FINE MOTOR ACTIVITIES 16 Implementing fine motor exercise programming for persons with PD: Occupational Therapys Role consisted of 8 weeks of fine motor activities in the RSB classes in order to educate and practice the importance of fine motor activities. The goal of the fine motor implementation study was to increase fine motor coordination, overall fine motor skills, and confidence in fine motor abilities. The first and final week of the study included completion of a pre/post-demographic questionnaire that also assessed the participants confidence in performing fine motor activities, such as tying shoes, fastening buttons, opening containers, and picking up small objects (Appendix D). The participants could respond to the survey question with 1: very poor/cannot do or 5: excellent on a likert rating scale. There was an additional open-ended question asking, Please comment on your current fine motor coordination abilities, including any activities you find troublesome. Each week the fine motor activities targeted task specific training in order to increase fine motor skills. Although the difference in means from pre to post NHPT (p=.150) of the right upper extremity did not show statistical significance, the findings of this study suggest that left upper extremity results tended toward significance in difference of means from pre to post NHPT (p=.058). Although both upper extremities did not show statistical significance the study may not have been adequately powered to achieve significance secondary to type II error. Post Hoc Power analysis indicated that with a total sample size of twenty-five participants and effect size set at .05 (large) and alpha error probability set at .05 the power was 0.67. Ottenbacher & Barrett, 1990 (as cited in Stein, Rice, & Cutler, 2013) state that an adequate power level is considered to be 0.8 (p. 361). Based on G*Power estimates for t-tests results of this study were not adequately powered to find smaller effect size. In addition to the 8-week fine motor activities, the OTS created a fine motor resource binder which included a list of materials needed to complete all activities, the purpose of the FINE MOTOR ACTIVITIES 17 activities, and possible ways to adapt the activity if needed. To ensure sustainability of fine motor activity incorporation, the fine motor resource binder is available in the gym at all times to all coaches to encourage incorporation of fine motor exercises in each boxing workout. Educational Seminar The Educational Seminar on assistive devices/adaptive equipment was held on March 10 . The OTS spent two hours educating those who attended on different assistive devices th available to them, the purpose of the devices, where they can purchase them, and how to use them. The OTS verbally educated the boxers and their caregivers at the educational seminar as well as gave them a tangible handout that they could take home with information regarding the device. Not only did the OTS verbally educate the boxers, but also physically demonstrated how to use the adaptive equipment. Each item discussed at the seminar had a handout that went along with it. To assess the outcome of the event, a feedback survey (Appendix C) was developed and attendees were encouraged to complete it anonymously. The OTS created an assistive/adaptive device resource binder including the items discussed at the seminar and items not discussed at the seminar that is kept in the Countermans lounge resource library for boxers and their caregivers to have access to at all times. To ensure sustainability of educational seminars, the OTS and site mentor collaboratively identified three other medical professionals to present information at the upcoming educational seminars. The topics that will be discussed at future educational seminars include; Depression and PD, Swallowing and PD, and Pharmaceuticals and PD. Inclusion of Occupational Therapist in Quarterly Physical Therapy Screening Process The OTS reached out to an occupational therapist, Kristin, and asked if she would commit to volunteering her time to the RSB physical therapy screening process. Upon her FINE MOTOR ACTIVITIES 18 agreeing, the OTS collaborated with Kristin on screening and implementation ideas for the RSB screening process. Due to occupational therapy services being included in the screening process for the first time, the OTS created a concise paragraph stating what occupational therapy is and what occupational therapists due. Educating boxers on the difference between physical therapy and occupational therapy (Appendix E) allowed the boxers to make a decision on what therapy they felt would best address their specific need. In order to ensure continuous quality improvement, the OTS created a feedback survey (Appendix F) asking those who signed up for the occupational therapy screening with Kristin if they felt as though their needs were met. RSB plans to continue including an occupational therapist throughout their screening process if positive feedback is received. Providing education, resources, and physical demonstrations of fine motor activities provided a way to promote accurate carryover following the discontinuation of the DCE. These aspects also encouraged implementation of OT foundations, principles, and evidenced-based implications to improve overall quality of services provided to the Parkinsons community. At Rock Steady Boxing (RSB), the OTS incorporated task specific fine motor activities such as buttoning, unbuttoning, tying, and zipping into workouts. The OTS incorporated games and activities that target the use of specific digits that are used in everyday life of the boxers for completion of activities of daily living (ADLs). This is impacting not only the boxers at this RSB Flagship location, but the other RSB facilities as well. The site mentor video recorded each of the fine motor tasks/activities and posted some of the videos on the RSB Facebook Forum that was shared with all RSB coaches across the world. This is impacting the RSB community based program and the Parkinsons community by increased awareness of fine motor activities that can be implemented throughout usual boxing workouts. Completing the DCE project as an OTS with FINE MOTOR ACTIVITIES 19 the PEOP as the primary guide allowed for the needs of the boxers, staff, Parkinsons community, and coaches to be continuously identified and addressed. Overall Learning Being able to communicate effectively and professionally throughout all aspects of the DCE was of primary importance. In order to complete all projects throughout the DCE, it was required to communicate with various individuals in a variety of different ways. During the educational seminar it was important to be able to demonstrate verbal and written communication to provide beneficial resources and demonstrations to the boxers and their family members regarding adaptive equipment. It was necessary to provide efficient and professional written communication via emails to other disciplines, manufacturing companies, colleagues, and staff in order to promote awareness and education in a professional and acceptable manner. Written communication was also used through advertisement of the educational seminar to boxers, through educational handouts, and differentiating effectively the difference between physical and occupational therapy. Oral communication was demonstrated through speaking at the educational seminar, speaking to groups of boxers explaining the fine motor activity for the day, phone calls, and speaking with RSB staff. I learned to speak loudly and with confidence when educating groups of boxers on the fine motor activity of the day and throughout the educational seminar. Through my time spent at RSB, I was able to further develop effective communication, management skills, leadership skills, research skills, and client-centered skills. Working directly with individuals fighting the fight against Parkinsons disease provided me the chance to improve my client-centered skills, non verbal communication skills, and flexibility. Many times I had to adjust the fine motor activity for the day to accommodate different boxers needs. FINE MOTOR ACTIVITIES 20 Adapting activities in the moment was something I struggled with upon arriving at RSB; however, now I feel confident in my ability to adapt tasks on the spot to provide client-centered, occupation-based, and evidence-based activities for each boxer individually. Prior to the DCE, I lacked confidence in my knowledge, education, and on the spot skills but through leading the educational seminar and being the only individual at the facility with a therapeutic background I had to learn to trust my abilities and know that I am competent. Throughout my DCE I have had many opportunities to advocate for the profession/role of OT. Having the skill to successfully explain the profession to a variety of individuals from all different backgrounds is a skill that I will be able to use throughout the entirety of my career as an occupational therapist. I feel as though this DCE experience has taught me many life lessons regarding change, professional practice, and carryover. The goals and objectives set out for this DCE were met by completion of an 8-week fine motor activity intervention, an educational seminar to educate boxers on available adaptive equipment, and perceived fine motor abilities were assessed pre and post the 8 week fine motor intervention. Being able to demonstrate therapeutic use of self, confidence, humility, leadership, and empathy are skills that have improved throughout my Doctoral Capstone Experience at Rock Steady Boxing Flagship Gym. FINE MOTOR ACTIVITIES 21 References Baatile, J. L. W. E., Langbein, W. E., Weaver, F., Maloney, C., & Jost, M. B. (2000). Effect of exercise on perceived quality of life of individuals with Parkinson's disease. Journal of rehabilitation research and development, 37(5), 529-534. Bonnel, W. & Smith, K.V. (2018). Proposal writing for clinical nursing and DNP projects, Second edition. New York: Springer Publishing Company. Broderick, M. P., Van Gemmert, A. W., Shill, H. A., & Stelmach, G. E. (2009). Hypometria and bradykinesia during drawing movements in individuals with Parkinsons disease. Experimental brain research, 197(3), 223-233. Christiansen, C., Baum, C. M., & Bass, J. (2011). The Person-Environment-Occupational Performance (PEOP) Model. Teoksessa EA Duncan (Toim.). Foundations for Practice in Occupational Therapy, 93-104. Cole, M.B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK, Inc. 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), 132-142. Dunn, W. (1988). Models of occupational therapy service provision in the school system. American Journal of Occupational Therapy, 42(11), 718-723. doi:10.5014/ajot.42.11.718 Duggan, E., Gaston, A., Barr, W., Lizcano, E., & Lannigan, E. (2016). Occupational therapy service outcome measures for certified community behavioral health centers (CCBHCs): Framework for occupational therapy service with rationale for outcome measures selection and listing of occupational therapy outcome measure tools. American FINE MOTOR ACTIVITIES 22 Occupational Therapy Association. Retrieved from: https://www.aota.org/~/media/Corporate/Files/Practice/MentalHealth/occupationaltherapy-outcome-measures-community-mental-health services.pdf Earhart, G. M., Cavanaugh, J. T., Ellis, T., Ford, M. P., Foreman, K. B., & Dibble, L. (2011). The 9-hole PEG test of upper extremity function: average values, test-retest reliability, and factors contributing to performance in people with Parkinson disease. Journal of Neurologic Physical Therapy, 35(4), 157-163. Foster, E. R., Bedekar, M., & Tickle-Degnen, L. (2014). Systematic review of the effectiveness of occupational therapyrelated interventions for people with Parkinsons disease. American Journal of Occupational Therapy, 68(1), 39-49. Jankovic, J. (2008). Parkinsons disease: clinical features and diagnosis. Journal of neurology, neurosurgery & psychiatry, 79(4), 368-376. Jarus, T. (1994). Motor learning and occupational therapy: The organization of practice. American Journal of Occupational Therapy, 48(9), 810-816. Jenkinson, C., Fitzpatrick, R., Peto, V., Greenhall, R., & Hyman, N. (1997). Parkinsons Disease Questionnaire (PDQ-39): Development and validation of a Parkinsons disease summary index score. Age and Ageing, 26(5), 353-357. Grice, K. O., Vogel, K. A., Le, V., Mitchell, A., Muniz, S., & Vollmer, M. A. (2003). Adult norms for a commercially available Nine Hole Peg Test for finger dexterity. The American journal of occupational therapy, 57(5), 570-573. Park, J., Gong, J., & Yim, J. (2017). Effects of a sitting boxing program on upper limb function, balance, gait, and quality of life in stroke patients. NeuroRehabilitation, 40(1), 77-86. RSB. (2018). About. Rock Steady Boxing. Retrieved from https://www.rocksteadyboxing.org FINE MOTOR ACTIVITIES 23 Sasco, A. J., Paffenbarger, R. S., Gendre, I., & Wing, A. L. (1992). The role of physical exercise in the occurrence of Parkinson's disease. Archives of neurology, 49(4), 360-365. Scaffa, M and Reitz, S. (2014). Occupational therapy in community-based practice settings (2nd ed.). Philadephia, PA: F.A. Davis Company. Stein, F., Rice, M. S., & Cutler, S. K. (2013). Clinical research in occupational therapy. Clifton Park, NY: Delmar Cengage Learning. Suchowersky, O., Reich, S., Perlmutter, J., Zesiewicz, T., Gronseth, G., & Weiner, W. J. (2006). Practice Parameter: diagnosis and prognosis of new onset Parkinson disease (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology, 66(7), 968-975. FINE MOTOR ACTIVITIES 24 APPENDIX A The Person-Environment-Occupational Performance (PEOP) Model Situational Analysis Collection of client(s) information 1. General description of population/community - All boxers, male and female, have a diagnosis of Parkinsons Disease and are between the age of 21-80 years old. All boxers participate in non contact boxing classes at least 2-3 times a week. 4. Population/community centered goals - Increase fine motor activities throughout RSB program - Increase overall independence with ADLs - Increase awareness of adaptive equipment available - RSB wants to be a leader as the headquarter location and have other affiliates follow and implement activities they are implementing FINE MOTOR ACTIVITIES 25 2. General areas of concern - Primary stakeholders are concerned about fine motor deficits indicated on PDQ-39 that are not being addressed secondary to not knowing how to address fine motor coordination/dexterity. Funding for fine motor activities and an area where these activities can be performed was an influencing factor. 5. Match between community or population goals and occupational therapy - ADLs - Work/job performance - Social participation - Education 3. Related occupational issues - Boxers have difficulty with ADLs secondary to fine motor deficits - Boxers lack education regarding adaptive equipment - Boxers often experience social isolation secondary to embarrassment of presentation of disease Evidence 8. Develop client centered plan to address occupational and related general goals for the population or community - Penny game, puff ball game, resistive clothes pin game, hand exercises, handwriting, wet towel game, sorting small objects, tic tac toe with marbles on golf tee Practitioner evaluation/assessment 9. Implement population/community centered intervention plan - Incorporate fine motor activities into each RSB class every day of the week FINE MOTOR ACTIVITIES 26 6. Capabilities/enablers: Person level performance issues: - All coaches hold CPT ACSM credentials - All boxers indicate deficit that could be improved upon Environmental support/policy/condition: - Big gym space - Group workouts - Volunteers at every class Activity/task/role: - Occupation- based activities - Headquarter gym 10. Evaluate outcome of plan - Posttest results indicated effectiveness of intervention - Feedback from boxers regarding perceived fine motor abilities 7. Constraints/barriers Person level performance issues: - Health status - Perform tasks with and without boxing gloves - Require increased time Environmental support/policy/condition: - Limited fine motor supplies - Limited funding Activity/task/role: - Current dilemma between gym headquarters and business headquarters 11. Occupational performance and participation - Fine motor abilities increase - Occupational Therapy on a consult basis APPENDIX B Fine Motor Interventions Completed Week 1: 2/11/19 Puff balls with resistive clothespins, newspaper bag exercise, threading beads on pipe cleaner 2/12/19 Fine motor relay, 10 puff balls with black clothespins, and 5 penny flips for each hand. Whoever was last has to do 10 jumping jacks 2/13/19 Coin pick up & weight, ball squeezes, 1-3 minute stations 2/14/19 Golf tees and marbles, threading heart with yarn 2/15/19 - Play dough and beads, rubber bands and pop cans Week 2: 2/18/19: Golf tees and marbles, tendon glides, play dough and beads FINE MOTOR ACTIVITIES 27 2/19/19: Did not have dexterity station. 2/20/19: Cards and clothespins. Hearts= bridges, Diamonds = weights, Spades = jumping jacks, Clubs = sit to stand 2/21/19: Push and pull workout. Rubber band, extension, for 1:45 minutes. Soft dodge ball, flexion, for 1:45 minutes 2/22/19: Forearm roll ups with 2# or 5# weights Week 3: Asked for Feedback from Boxers this week 2/25/19: Threading beads on pipe cleaner, puff balls with resistive clothespins 2/26/19: Did not have dexterity station. 2/27/19: Finger walk ups on dowel rod 2/28/19: Carrying marble on spoon for 40-meter dash with dominant hand one way and non dominant hand other way. If you drop marble, you do 2 squats. 3/1/19: Finger walk ups on dowel rod Week 4: 3/4/19: Button It Up, Zip It, Tie One On (ADL station) 3/5/19: Resistive clothespins with Legos to build desired design 3/6/19: Partners playing memory game using tweezers to pick up cards 3/7/19: Rice bucket for hand strengthening and range of motion (ROM) exercises 3/8/19: Dodge ball hand strengthening exercises Week 5: 3/11/19: 7 Helpful Hand Exercises for PD 3/12/19: Finger walk ups on dowel rod 3/13/19: Dodge ball hand squeezes from seated, lying, and standing position. 2,4,6,8,10,8,6,4,2 3/14/19: Flarp putty for finger strengthening 3/15/19: Rice Bucket for hand strengthening and range of motion (ROM) exercises Week 6: 3/18/19: Ring out wet wash cloth in bucket for hand strengthening 3/19/19: Button shirt relay (with use of button hook) and resistive clothespins 3/20/19: Thumb war, Hot Hands, and Double Double with partners 3/21/19: Assembly and pulling beads off of sticky tape 3/22/19: Did not have dexterity station Week 7: 3/25/19: Isometric hand exercises. Squeeze dodge ball and hold for 5 seconds. Extend fingers with resisted rubber band and hold for 5 seconds. 3/26/19: Did not have dexterity station 3/27/19: 7 Helpful Hand Exercises for PD. Exaggerating extension of all exercises. 3/28/19: Writing exercise. First write in cursive I love Rock Steady Boxing, then print in all capital letters I LOVE ROCK STEADY BOXING. 3/29/19: Writing exercise. First write in cursive I love Rock Steady Boxing, then print in all capital letters I LOVE ROCK STEADY BOXING. FINE MOTOR ACTIVITIES 28 Week 8: 4/1/19: Squeeze and pop gadget to address hand strengthening. Post NHPT testing. 4/2/19: Did not have dexterity station. Post NHPT testing. 4/3/19: Isometric hand exercises with dodge ball. Holding for 5 seconds each hand. 4/4/19: Post NHPT testing 4/5/19: Post NHPT testing APPENDIX C Educational Seminar Feedback Thank you for attending the Educational Seminar over adaptive equipment and assistive devices! I hope the seminar met your reason for attending. Please take a few minutes to complete this survey to help me better understand what I did right as well as how I could improve. How satisfied were you with the overall event? (Circle one) Completely Satisfied Somewhat Satisfied Somewhat Dissatisfied What was your favorite part of the seminar? Completely Dissatisfied FINE MOTOR ACTIVITIES 29 Was there anything about the seminar you think could have been done better? How did you benefit from attending? The information presented was meaningful to me: (Circle one) Strongly Disagree Disagree Neutral Agree Strongly Agree Additional Comments/Suggestions APPENDIX D Demographic Information and Motor Skills Question Implementing fine motor exercise programming for persons with PD: Occupational Therapys Role Participant Number: _____ Age: _____ Gender: _____ RSB Class: _____ FINE MOTOR ACTIVITIES 30 On a scale of 1 to 5, how well do you think you are performing fine motor activities, such as tying shoes, fastening buttons, opening containers, and picking up small objects? 1- Very Poor/ Cannot do; 5 = Excellent, No Problems. Circle your answer below. 1 Very Poor/Cannot Do 2 3 4 5 Excellent Please comment on your current fine motor coordination abilities, including any activities you find troublesome. ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ APPENDIX E Description of the Difference Between Occupational Therapy and Physical Therapy What is the difference between occupational therapy and physical therapy? An occupational therapist (OT) is skilled and trained to educate and assist individuals from all walks of life to be as independent as possible in activities of daily living (ADLs). ADLs are, simply put, anything you want to do, need to do, or are required to do. If you find yourself having difficulties with ADLs seek out an occupational therapist. OTs can provide exercises, adaptive equipment, and emotional regulation strategies to assist an individual in their journey towards independence. FINE MOTOR ACTIVITIES 31 A physical therapist (PT) is skilled and trained to educate and assist individuals from all walks of life to be as independent as possible in performing movement of the human body. Physical therapists focus on a biomechanical approach to facilitate correct movement, prevent injury, and reduce pain. If you find yourself having a difficult time doing the things you want to due to pain, loss of balance, or neurological deficits seek out a physical therapist. PTs can provide exercises, massages, and other techniques to treat the actual impairment from a biomechanical approach. APPENDIX F Occupational Therapy Screening Feedback Thank you for signing up for an Occupational Therapy (OT) screening at Rock Steady Boxings quarterly PT screening. I hope that the OT met your reason for signing up. Please take a few minutes to complete this survey to provide RSB feedback on the inclusion of OT in the quarterly PT screenings. FINE MOTOR ACTIVITIES 32 How satisfied were you with the overall 30 minutes with the Occupational Therapist? (Circle) Completely Satisfied Somewhat Satisfied Somewhat Dissatisfied Completely Dissatisfied How did you benefit from seeing an occupational therapist? In what way were you educated on your identified need? Would you recommend other boxers to see an occupational therapist? Explain. Additional Comments/Suggestions  ...

... Running Head: QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 1 Increasing Quality of Life and Occupational Participation in Individuals with Dementia Megan Shuret 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: Brenda Howard, DHSc, OTR QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 2 A Capstone Project Entitled Increasing Quality of Life and Occupational Participation in Individuals with Dementia 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 Megan Shuret Doctoral Student of Occupational Therapy 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 QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 3 Abstract At a long-term care facility in mid-western Ohio, a secured memory care unit was created to provide structure, routine, and activities for individuals with early to late stages of dementia. There has been a lack of education and programing resulting in minimal organization of the unit and has put the residents at a higher risk for functional and cognitive decline as well as having the potential for behaviors that are associated with dementia. The approach of this Doctoral Capstone Experience (DCE) was three-fold: 1) establish and implement a Functional Maintenance Program (FMP) utilizing components from The Forget Me Not program (Warchol, 2004) and the Tailored Activity Program (Gitlin et al., 2009), 2) educate the therapy staff on the habilitative approach to intervention and the implementation of the FMP, and 3) educate nursing staff on the importance of structured activities and how to tailor activities to specific cognitive levels. The DCE student established the FMP by utilizing an activity prescription (Warchol, 2004) through the use of skilled occupational therapy services to relay pertinent information of the resident, as well as provided educational in-services to the nursing and therapy staff. All participants of the in-services reported understanding of the purpose and implementation of the FMP and were satisfied with the information presented. Nine residents had an activity prescription established and no changes in current functioning were observed. The FMP deems effective; however, it is recommended that the program continues to be evaluated and improved to increase staff carryover. QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 4 Background Dementia has been defined by Alzheimers Disease International (n.d.), as a communal name for progressive brain conditions that affect a persons memory, thinking processes, behaviors, and emotions, and is the leading cause of dependency and disability upon the older adult population. It has been estimated that there are over 9.9 million new diagnoses of dementia each year worldwide with approximately 46.8 million people living with a form of dementia in 2015 (Alzheimers Disease International, n.d.). Research suggested that as much as three quarters of people throughout the world who are living with dementia have not received a true diagnosis (Alzheimers Disease International, n.d.). By the year 2029, all the baby boomers will be at and above 65 years of age (Colby & Ortman, 2014). With the baby boom generation currently approaching old age, it could be expected that the number of people with dementia will increase within the upcoming years as well as having increased risks for functional limitations (Palgi, Shrira, & Zaslavsky, 2015) and eventually lead to dependency. There is currently no cure for dementia; however, there is an abundant availability of support and treatment options for associated symptoms (Alzheimers Disease International, n.d.). Occupational therapy (OT) has a broad scope of practice and has been involved in providing interventions to individuals with dementia. Interventions include non-pharmacological and systematic approaches that are designed to improve or maximize functional abilities and independence within their environment (Ojagbemi & Owolabi, 2017). Furthermore, OT-based interventions can be tailored to address both cognitive and non-cognitive symptoms in persons with dementia (Ojagbemi & Owolabi, 2017). The goal of an occupational therapist is to achieve health and well-being through the participation of occupations or activities which will ultimately QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 5 promote, facilitate, and maintain health (American Occupational Therapy Association [AOTA], 2014). The World Health Organization (2006) defined health as a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity (p. 1). Occupations are activities that involve daily living (ADLs), instrumental activities of daily living (IADLs), rest and sleep, education, work, play, leisure, and social participation (AOTA, 2014). Through participation in occupations or activities, a persons health and quality of life (QoL) can be enhanced thus reducing functional decline in older adults (Palgi et al., 2015) and persons with dementia (Gitlin et al., 2009). Dementia has been perceived to lead to the decline of independence and identity in individuals and is linked to decreased QoL (Brod, Stewart, Sands, & Walton, 1999). The balance between an individuals self-esteem, happiness, belongingness, and enjoyment are factors that impact QoL (Brod et al., 1999). However, measuring a persons QoL is based primarily on subjective factors, and cognitive impairments may also affect their interpretation, specifically in persons with severe stages of dementia (Ojagbemi & Owolabi, 2017). A caregiver, of an individual with dementia may perceive a high or low QoL based on the level of dependency that the individual needs (Hoe, Hancock, Livingston, & Orrell, 2006). Research suggested that the main reason for decreased QoL is an individuals functional independence (Steultjens et al., 2004) and that a higher QoL lessens the rate of functional decline (Palgi et al., 2015). It has been proposed that the use of purposeful and meaningful activities enhances QoL in nursing home residents (Kolanowski & Buettner, 2008) and more specifically, individuals with dementia (Gitlin et al., 2009). Activities may help fill void, reduce behaviors, and maintain social roles in persons with cognitive impairments (Kolanowski, Buettner, Costa, & Litaker, QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 6 2001). Certain activities that are individualized are meant to maximize engagement and compensate for the cognitive deficits that are associated with different levels of cognition (Malone & Camp, 2007). Gitlin and colleagues (2009) advised that activities should be individualized and tailored to specific factors that are impacting a person with dementia. Occupational therapists can offer a non-pharmacological approach to treatment and have the knowledge to conduct assessments to determine the best activities for an individual (Gitlin et al., 2009) to maximize their best ability to function in all daily tasks and occupations. In a study by Olsen and colleagues (2016), it was determined that persons with dementia residing in nursing facilities had significantly lower QoL, social support, and social contact as compared to individuals living at home with their dementia. One aim for this project is to enhance the QoL of individuals with lower cognitive levels that reside in a nursing facility by providing skilled OT services to maximize and maintain their best ability to function through establishment of a functional maintenance program (FMP) (Warchol, 2004). A secondary aim is to disseminate the implementation of the FMP to the therapy staff, consisting of occupational, physical, and speech therapists, as well as educate them on different approaches to skilled intervention. A third aim is to educate nursing staff on the importance of activities, how to utilize activities and the FMP to maximize quality of life and reduce risk for functional and cognitive decline. Research suggested that the main reason for a lower QoL is losing functional independence in persons with dementia (Steultjens et al., 2004); likewise, having a higher QoL reduces the progression of functional decline throughout late adulthood (Palgi et al., 2015). Based on each persons functional abilities, providing structured activities can be enjoyable experiences as well as promote physical health, reduce occurrence of negative behaviors, and QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 7 provide cognitive and social stimulation, thus potentially improve QoL in these individuals (Hindt, Morris, Sohre, & Buchanan, 2018). Occupational therapists (OTs) have the knowledge set to use functional and cognitive assessments to determine an individuals best ability to function based on the cognitive level and provide interventions to maximize and maintain those functional abilities. A potential limitation may be that nursing staff needs to assist with the carryover of activities and allowing the individuals to participate at their highest functional level. Occupational therapists can include staff education in their plan of care for an individual with dementia; furthermore, it takes a team to provide adequate activities to maintain their functional abilities and maximize QoL. Positive staff interactions have proven to encourage well-being in those with dementia and has played a large impact in the engagement of daily activities (Eastham & Cox, 2017). Therefore, to maximize QoL in residents with dementia, OTs can use their skill set to determine the appropriate activities and modifications for the individual and can educate nursing staff on the patients cognitive level including their abilities and limitations, and how to use activities as a way to not only increase participation but prevent and minimize negative behaviors (Fraker, Kales, Blazek, Kavanaugh, & Gitlin, 2014). According to Bonnel and Smith (2018), choosing a framework helps to guide patterns of thinking as well as assists professionals to recognize the theoretical foundations within their practice. The Allens Cognitive Levels (ACL) frame of reference, designed and created by OT, Claudia Allen, focuses on the role of cognition (a process skill), the role of habits and routines, the effect of physical and social contexts, and the analysis of activity demand (Cole & Tufano, 2008, p. 185). More specifically, the Allens Cognitive Disability Model is comprised of six cognitive levels, ranging from zero to six and include corresponding abilities or limitations that QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 8 can be used to determine an individuals functioning to perform and participate in familiar activities (David & Riley, 1990) such as ADLs, for example. The term functional cognition has been used to describe the interactions between a persons cognitive abilities and the structure of an activity to create adequate performance (Earhart, 2013). With the use of therapeutic activities, disability can be compensated by allowing the individual to use their remaining abilities to complete meaningful activities (Allen, 1987) by providing them with activity modification and adaptations. By assessing and determining the Allens cognitive levels (ACL) through a battery of functional and cognitive assessments, OTs have a measure on what a person can do (Allen, Blue, & Earhart, 1995). Occupational therapists can then select activities and interventions to maximize an individuals preserved capabilities and ultimately increase their participation to reduce risk for functional and cognitive decline and maximize their QoL. It is important for OTs to focus on and improve an individuals best ability to function and not merely by the impairments that they have, particularly in older adults (Allen, Blue, & Earhart, 1995). More specifically, it is necessary to determine their abilities and select treatment and methods to maximize their functional abilities (Allen et al., 1995). In order to assess and determine a persons ACL, a battery of cognitive assessments should be used because cognition is the primary determinant of how a person functions in everyday activities at their full potential (Dementia Care Specialists, 2016). The ACL can measure what an individual can do and give a framework on what to expect from the abilities of a mentally impaired adult (Allen et al., 1995). All six of the ACL defines an individuals remaining abilities (Dementia Care Specialists, 2016). To determine specific cognitive levels, assessments, such as the Allens Cognitive Level Screen (ACLS), Allens Diagnostic Manual (ADM), and, for lower levels of cognition, the Routine Task QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 9 Inventory (RTI), can be administered and interpreted by an OT (Fraker et al., 2014). These assessments assist in answering the following questions: What can they do, what will they do, and what may they do? (Allen et al., 1995). Explicitly, what are their abilities, interests, and possibilities at each cognitive level? (Dementia Care Specialists, 2016). Treatment and interventions are then focused on the opportunity for an individual to use the best of their abilities to participate in daily occupations and activities (Allen et al., 1995). What an individual may do can be best determined by the influence of their social support system (Allen et al., 1995). Within nursing home facilities, it is common to see the staff assisting with the residents functional tasks when, essentially, the patient may not need the amount of assistance that is provided based on their abilities. Not allowing a resident to perform at their maximum potential may hinder their occupational participation potentially leading to decline in functional abilities, cognition, and overall QoL. When nursing staff can understand the specific dementia stages of their residents, within a nursing facility, they now have a roadmap to care for their remaining abilities which become the main focus (Fraizer & Moore, 2010). Having the knowledge to promote function of their residents abilities, offers hope for the individuals resulting in increased compassion and caring for them (Fraizer & Moore, 2010). Occupational therapists can provide the nursing staff with education of the functional abilities at each cognitive level as well as how to tailor activities and ADLs to an individual. Once a program is established and education is provided, therapists and nursing staff can enable the residents to perform at their best ability to function (Fraizer & Moore, 2010). Ultimately, with the knowledge of the cognitive levels and finding the individuals best ability to function with activities and ADLs, the staff can reduce excess disability and promote well-being (Fraizer & Moore, 2010). QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 10 With the aging population increasing, it is possible that the number of people diagnosed with dementia will also increase in the upcoming years (Alzheimers Disease International, n.d.). It is critical that therapists and nursing facilities recognize that in order to maximize the QoL of persons with dementia, activities that facilitate engagement, attention, and alertness should be provided to reduce the rate of decline (Kolanowski, Litaker, Buettner, Moeller, & Costa, 2011) and potentially maintain cognitive and functional abilities. The Diffusion of Innovations Theory can be utilized to communicate or diffusing an idea or practice (innovation) to others to help promote change through the channel of adopters (Scaffa, Reitz, & Pizzi, 2010). The channel of adopters ranges from their openness to adopt an idea (Scaffa et al., 2010); that is, if an idea or program deems itself positive and influential to the population. Occupational therapists can provide interventions and education to maximize participation in activities, tailored to the persons cognitive level, such as partaking in self-care tasks, leisure activities, or social participation, to name a few. If OTs can administer a battery of cognitive assessments, to determine the persons cognitive level, and obtain some of their interests and routines, then research will provide a guide to determine their ACL and their best ability to function. Thus, nursing staff can be educated to continue to provide appropriate activities to ultimately enhance the QoL of individuals with dementia. It is important for the research and theory to be disseminated in order for therapists and nursing facilities to provide best practice for people with dementia to maximize their best abilities and increase QoL. Screening & Evaluation A needs assessment is completed in order to better understand the problems or apertures associated with different situations and provide a baseline for pursuing improvement (Bonnel & QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 11 Smith, 2018). At a skilled nursing and long-term care (LTC) facility in mid-western Ohio, as part of the Doctoral Capstone Experience (DCE), the DCE student completed a needs assessment that utilized skilled observations, interviews, and the use of a strengths/weaknesses/opportunities/threats (SWOT) analysis to document situations within the memory care unit at the facility and the therapy department relating to dementia care. According to Bonnel and Smith (2018), a SWOT analysis provides the opportunity to look at the four concepts (strengths, weaknesses, opportunities, and threats) to better understand an issue and ultimately create a plan to make improvements where needed. When a need is identified, it is important to research the literature to find evidence-based strategies on how to improve a problem or area (Bonnel & Smith, 2018). The following includes the data collected from the needs assessment in both the memory care unit and the therapy department, specifically with OT, as well as the need and an opportunity for the facility related to dementia care. The SWOT analyses are documented in Figures 1 and 2. Memory Care Unit At the LTC facility, a secured memory care unit was designed for individuals with early and middle stage dementia. The purpose of the secured unit is to establish an area where individuals can interact safely with their environment and provide structure and routine to their daily lives through the use of activities. Because the unit is very new, the daily self-care routines and activity schedules have not yet been accustomed to and finalized. Within the unit, there are a variety of activities available to the residents and one-on-one assistance if needed for ADL tasks and participation with leisure activities. The nursing staff and aides are to provide out-of-bed QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 12 activities and encourage participation in order to establish engagement and structure to the day; however, there are multiple deficits impacting the current organization of the unit. The nursing staff at the facility reported that the residents are wanting to stay in bed and sleep frequently throughout the day, as correspondingly described in research that residents spend less than 13% of the day performing activities (Bradshaw, Playford, & Riazi, 2012) and are unoccupied for the majority of the day (Smit, de Lange, Willemse, Twisk, & Pot, 2015). Research suggested that positive staff interaction with the residents will aide in the daily participation in activities (Eastham & Cox, 2017); however, it has been observed that the nursing staff is not encouraging the residents to participate in daily activities. Nursing staff reported that they are unsure how to tailor and grade activities to the group or an individual resulting in lack of participation. Researchers have discovered that residents with dementia avoid participating in activities by nursing staff because they were not tailored to their interests or cognitive levels such as an activity being too simplistic (Palacios-Cea et al., 2016). Occupational therapists have the knowledge to select activities based on individual capabilities and not strain on their impairments such as cognition (Gitlin et al., 2009). Therapy Department: Occupational Therapy Occupational therapists clearly have a role in providing skilled interventions and recommendations to individuals with dementia as well as their caregivers within a home-based setting (Gitlin et al., 2009). Because dementia is associated with the aging population as seen in LTC facilities, the whole therapy staff at the facility had received training on dementia capable care in 2016. The purpose of the course was to understand the different cognitive levels and stages of dementia and how to facilitate approaches to care, specifically with behaviors that may QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 13 be associated with dementia (Dementia Care Specialists, 2016). At this LTC facility, the OTs are required to use the ACL screenings on each patient in order to determine their cognitive level which, as reported, gives a reference on their ability to discharge back to home and how much assistance may be required at home or at the facility. Allen and colleagues (1995) reported that the ACL should be used as a method to discharge planning but also used to determine the individuals remaining abilities. The OTs at the facility have expressed difficulties in providing effective and meaningful activities for patients in the middle to late stages of dementia, similar to that seen in research by Gately and Trudeau (2017). Interventions have often been directed towards wheelchair positioning or for a decline in functional status at this LTC facility with the dementia population. Commonly, the OTs have been assessing limitations and deficits of occupational performance rather than using a strengths-based approach for evaluation, intervention, and goal planning, as recommended by Gately and Trudeau (2017). Hindt and colleagues (2018) reported that short term memory as well as new learning is compromised in individuals with dementia; therefore, using a strengths-based approach for these individuals can help discover their preserved capabilities so that they can continue to require the least amount of assistance with their abilities and maintain those abilities (Gately & Trudeau, 2017). The OTs at the facility have been unsure how to write goals and provide interventions for the maintenance of abilities in order for services to be reimbursable through Medicare Part B, for example. Gitlin and colleagues (2009) suggested that services may be reimbursable when there is a physicians order and concern for safety, functional decline, or behaviors that may impact daily functioning. QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 14 Opportunities and Threats Because the memory care unit is in ample need for structure to maximize the QoL of persons with dementia, OT can facilitate participation in activities to reduce risk for functional and cognitive decline. Gitlin and colleagues (2009) created a Tailored Activity Program (TAP) in a home-based setting to not only reduce the behavioral symptoms associated with dementia but to also preserve their QoL. The program utilizes OTs for completing a variety of assessments, such as the ACL, to determine the individuals capabilities and interests, and then creates an activity prescription that includes specifics on their abilities, precise activities and goals, as well as techniques to implement the activities tailored to the individual (Gitlin et al., 2009). At this facility, the OTs have the knowledge to administer the cognitive assessments and determine the individuals best ability to function as well as their likes and interests. Interventions cannot focus on the maintenance of abilities due to most reimbursement policies; therefore, nursing staff needs to be educated to follow through with specific skills to maintain function. An activity prescription can be created to pass on to nursing staff within the memory care unit to better provide meaningful activities to the resident to reduce their risk for functional and cognitive decline and ultimately maximize their QoL. Both the nursing staff and the therapy department required education on the activity prescription as well as the importance of activities to reduce risk for decline in these individuals. Even though dementia is a progressive disease that impacts function, research has shown that purposeful activity can enhance the QoL of these individuals (Kolanowski & Buettner, 2008). Implementation QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 15 With the results of the needs assessment, a program was established within the memory care unit as part of the DCE. The purpose of a FMP is for the entire team, consisting of therapists, nursing staff, and aides, to come together to enable the resident to maintain the highest functional level that was achieved in therapy (Warchol, 2004). It can also help to give a measure to the functional and cognitive status of the individual so that nursing staff can report a change in status after discharge from therapy. When a new resident is admitted to the secured memory care unit at the facility, skilled OT services are warranted in order to determine the individuals cognitive level and their best ability to function in ADLs. Therapists can then facilitate intervention to maximize the patients independence in self-care tasks and participation in out-ofbed activity and ultimately establish the FMP. The following contains the process the DCE student took to complete the evaluations and interventions within the memory care unit, how the FMP was established and maintained, educational in-services that were provided, as well as the components of leadership that were needed in order to make the program successful at the facility. Evaluation and Interventions Based upon the traditional practices of OT and throughout the literature, the DCE student created a process for evaluation, intervention, and establishment of a FMP, to increase the QoL of the residents within the memory care unit at the facility. Upon evaluation, the OT DCE student completed a chart review of the patients medical status and prior level of functioning, followed by collecting a brief occupational profile from the patient and family, if applicable, that includes their history and past experiences as well as patterns of daily living, as similarly described by AOTA (2014). The evaluation process progressed to assess their performance in QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 16 occupations (AOTA, 2014), such as with self-care tasks and functional transfers, and utilizes skilled observation to determine the patients strengths and limitations. The evaluation of a person with dementia also included a battery of cognitive assessments in order to determine the patients cognitive level or ACL that gives an insight into what the individual can do, will do, or may do (Allen et al., 1995) specifically with self-care tasks. As components of the Allens cognitive screens, the DCE student administered the ACLS leather lacing to determine the individuals cognitive level, if their level was greater than or equal to 3.2 (Allen et al., 1995). If the patient was unable to complete the ACLS potentially from a pivotal deficit, the DCE student administered the ADM placemat to evaluate the individuals general ability to function (Allen et al., 1995). These two measures are solely screens and need to validated by another means (Allen et al., 1995). The book by Allen, Blue, and Earhart (1995), Understanding Cognitive Performance Modes, provided the modes of performance at different ACL scores and was used to help verify the score obtained from the screen. When using the modes of performance, the DCE student utilized clinical reasoning and judgement to determine the accurate ACL score for the patient. The modes of performance are helpful to determining goals to work towards in order to maximize performance in occupations (Allen et al., 1995). For example, if a patient has an ACL score of 4.4, a goal was written to maximize their best ability to function to match that ACL score with dressing, bathing, and toileting by utilizing the RTI and modes of performance as a means of interpreting results. If the patient is participating at their best ability to function with ADL tasks, skilled OT services are still warranted to create and implement the FMP for the individual in order to maintain the current and maximum functional level. In other words, OTs can utilize the QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 17 habilitative approach to therapy focusing on maintaining their abilities and reducing the risk for further decline (Gately & Trudeau, 2017). According to the newsletter written by Raia and Koenig-Coste (1996), AOTA defined habilitation services as a method to assist an individual in improving, maintaining, or reducing the risk for decline in functioning throughout participation in occupations or activities. The newsletter continues to say that performance and participation would decrease without interventions focusing on continued maintenance (Raia & Koenig-Coste, 1996). When taking this approach to OT services, the DCE student created goals to be directed towards minimizing further decline, as recommended by Gately and Trudeau (2017), such as establishing a daily routine, increasing familiarity within the new environment, and maximize participation in out-of-bed activities to reduce the rate of functional and cognitive decline and enhance QoL. Warchol (2004) suggested to plan intervention to be of a short duration, approximately two weeks, in order to establish the FMP for carryover of the individuals maximum functional abilities. After the initial evaluation had been completed, the DCE student and OT assistants (OTA) utilized the acquired information and goals to direct the interventions. If taking on a rehabilitative approach to treatment, the OT interventions focused on maximizing the patients functional abilities to participate in ADLs while documenting the mode of performance or RTI for each task. A self-care goal was met once the individual was at their maximum ability to participate in a task centered on comparable scores of the ACL and modes of performance. When utilizing the habilitative approach to OT services, the DCE student focused interventions on determining the patients likes and interests through an Interest Checklist, maximizing their participation in out-of-bed activities, and increasing familiarity within the environment such as QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 18 locating their room. Warchol (2004) suggested that activities were most important to supporting the function and well-being of individuals with dementia. The ACL score provided the DCE student with an insight on what type of activity modifications are required to amplify participation in activities. Research suggests that simple repetitive actions or sensory stimulation are activities are affective for participation of individuals with lower cognitive levels whereas goal directed and multi-stepped activities are affective for individuals with higher cognitive levels (Gitlin et al., 2009). The ultimate goal when utilizing the habilitative approach within the memory care unit was to determine the patients likes and interests, their best ability to function with ADLs, cues and assistance required to maximize their participation, and environmental modifications, which was all information communicated within the activity prescription. Establishment of the Functional Maintenance Plan The design and establishment of the FMP at this LTC facility stemmed from two previously-established programs found in the literature: The Forget Me Not program (Warchol, 2004) and TAP (Gitlin et al., 2009). The Forget Me Not program was designed by an OT that designed her program around using the cognitive assessment tools to determine an individuals level of functioning and focuses on encouraging maximum functioning in occupations through the use of social and leisure activities within a LTC facility (Warchol, 2004). Within this program, the OT provides education to the nursing and activity staff on the individuals cognitive levels, abilities, and appropriate activities for the individual to participate in (Warchol, 2004). The Forget Me Not program takes on an interdisciplinary approach as it involves not only OTs but also physical and speech therapists (Warchol, 2004). As a team, the common goal is to allow QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 19 the individual to attain their maximum functioning and safety with ADLs, transfers, and functional mobility, as well as to increase their well-being (Warchol, 2004). The TAP was developed by Gitlin and colleagues (2009) as a home-based OT intervention to reduce behaviors associated with dementia, increase their participation in activities, and improve caregiver well-being. The OT uses a combination of cognitive functioning tools, an interest questionnaire, and interviews to conduct an initial assessment. The program then uses an activity prescription to convey the individuals abilities, methods to implement a target activity, as well as a goal to strive for (Gitlin et al., 2009). Education is then provided to the caregiver that includes cueing, environmental set up, and communication, to name a few (Gitlin et al., 2009). Taking components of the two aforementioned programs, the DCE student established an activity prescription, as part of a FMP, for this facility within the memory care unit. Components were comprised of the assessment results, strengths and abilities, interests, activity recommendations and goals, and instructions and modifications. The assessment results section included the ACL scores along with a brief synopsis of their current functioning with the modes of performance such as with dressing, toileting, bathing, and grooming tasks. These scores gave a measure of the individuals abilities so that nursing staff can determine if therapy needs to be consulted again for a potential decline or change in functioning. The strengths and abilities section of the activity prescription included the ADL performance and task analysis of the individual. More specifically, it included how much assistance and cues were needed to perform self-care tasks, how long an individual attends to an activity, level of communication, and their ability to problem solve, to name a few examples. The interest section provided a list of activities QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 20 and prior occupations and roles that were determined throughout the occupational profile, interest checklist, and implementation of activities throughout treatment. Activity recommendations and goals was the next section of the activity prescription and contained a list of activities to maximize participation and maintain functioning. For example, the section entailed the individuals routine recommendations, types of activities that they would benefit from, and goals to strive for after discharge. One of the most common goals that was applied is that the patient will participate in 100% of their daily ADL routine with set-up assist and 50% of out-of-bed leisure activities. The last section, instructions and modifications, involved information to enhance their participation and communication, and how to simply the activities and setting. Examples of this section included the environmental set-up, types of cues needed, and allowing for choice. Occupational therapists, physical therapists, and speech therapists were all permitted to adding to the activity prescription to relay pertinent information; however, the OT DCE student took the leadership role in implementing the FMP for each resident. Once discharge from OT services was approaching, the activity prescription was completed as a collaborative unit among all treating therapists for that specific patient. The DCE student was then responsible for educating the nursing and activity staff on the activity prescription and acquired their signature on the document indicating that they have reviewed and been educated on it. The activity prescription was copied, for therapys records, and placed in the FMP binder that is located at the nursing station on the unit for future reference as needed. A screen, involving consultation with nursing staff and aides, was completed approximately two to three weeks after initial discharge from therapy, and will be screened again quarterly, to assure QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 21 the FMP is being implemented and to determine if the client is continuing to function at the best of their ability that was established at discharge. Staff Development In order for the FMP to be effective, all team members must come together and be committed to the program and the care of the residents (Warchol, 2004) on the secured memory care unit. If one single team member does not have the commitment, desire, or patience, the program will not succeed (Warchol, 2004). Additionally, some or the majority of the nursing staff and aides may not have the knowledge to grade activities to the varying cognitive levels of each patient (Warchol, 2004) or know how to engage multiple residents in a particular group activity. Warchol (2004) suggested that as dementia progresses, the individual has more difficulty initiating and attending to activities and can result in deterioration of communication and occurrence of behaviors, thus leading to decline in participation in ADLs and leisure activities (Warchol, 2004). As an emerging area of practice, OTs have the knowledge and resources to provide education to the staff on the ACL and adaptations to activities in order to maximize participation (Chabot, 2013; Warchol, 2004). The DCE student provided an in-service to the majority of nursing staff and aides within the facility. The DCE student provided a PowerPoint presentation on a variety of factors including the role of each team member within the unit, research behind the importance of activities and the implementation the FMP, components of the ACL, activity analysis descriptions and adaptations, as well as activity recommendations per cognitive level. A pre- and post-test was administered to the nursing staff with 100% of the group satisfied or very satisfied with the presentation and all members communicating an understanding of the FMP. QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 22 One-on-one consultation and education continued to occur throughout the DCE in order to enhance the understanding of the ACL scores and the activity adaptations associated with each cognitive level and individuals interests. The DCE student created a binder that included the PowerPoint presentation, information on the ACL scores, and the research behind the implementation of the FMP. Multiple copies were made and the binders were distributed within the unit, the therapy department, and to the activity director for future reference. The DCE student provided one-on-one education and collaboration to the OTs and OTAs as well as an additional in-service to the complete therapy staff on the implementation of the FMP and how to continue with the established program. Occupational, physical, and speech therapists were educated on the research behind the establishment of the FMP as well as components of the activity prescription. The DCE student provided a handout that included examples for each section of the activity prescription as a reference for cohesion of the program. The therapists were also educated on how to notify and instruct the nursing staff and aides once the activity prescription is completed for the individual residents. A pre- and post-test was administered and all therapy staff members reported to have a general understanding of the FMP and its components including the research behind the establishment. One-hundred percent of the therapy group indicated that they were satisfied to exceptionally satisfied with the information provided through the in-service. Leadership When implementing and educating staff on the development of a new program, having the skills of a leader truly helped the process. As the past president of AOTA, Gilfoyle (1989) gives several qualities of a good leader. She described a leader as a person who directs change, QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 23 builds confidence and empowers others, defines goals and visible directions, as well as performs actions that are related to their beliefs (Gilfoyle, 1989). Leadership is also personally defined as leading, guiding, and mentoring others and holding individuals accountable. The skills of a leader were required when implementing a new program however it was difficult to ensure the trust and support of others as a leadership role was taken. In order to acquire a leadership role, the DCE student needed to gain rapport and trust with the staff at the facility and with the patients. The DCE student gained this rapport and trust by getting to know each of individuals and demonstrating the passion and desire that is embedded in order to make the program succeed. The DCE student shared knowledge from the research in order to show the potential for leadership and for success with the FMP. Displaying to others the opportunities for change by implementing tailored activities made them excited for the development of the FMP in order to increase the QoL of individuals residing in the memory care unit by maximizing their participation in activities. Once the research was presented and initial implementation was underway, the DCE student gained confidence and it empowered others to make a change. Staff was able to see the change in the residents and how the FMP impacted their QoL through participation in activities. The DCE student established visible directions and goals during one-on-one sessions with the nursing staff, aides, and therapists, as well as through the in-services that relayed the specific guidelines to implementation. As a team, the nursing and therapy staff were holding each other accountable for following the components of the activity prescriptions to the best of their ability for the residents. Ultimately, the DCE student has established and implemented a FMP with success from the whole team at the facility. Discontinuation QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 24 As referenced in Figure 1, the FMP within the memory care unit has limitations that can affect the programs continuation and success. The main concern is for staff carryover. Warchol (2004) reported that a program will not be successful if a single team member does not have the desire and commitment to make it succeed. The DCE student provided educational in-services as part of the implementation phase; however, there are additional strategies that can promote positive outcomes for the future. Quality improvement not only focuses on gaining or improving the quality products or processes but also has a means of maintenance (Bonnel & Smith, 2018). To meet the second goal for the DCE, the DCE student established and distributed multiple documents to the therapy staff in a binder in order to continue with the program as it was initially developed. Some of those items include copies of previous PowerPoints from the in-services, examples for the activity prescription, a list of potential activity goals for the evaluation phase of skilled treatment, a created document of appropriate activities based on research from the ACL, as well as evidencebased articles that were used to create the program. The DCE student created an FMP binder to hold the completed and signed activity prescriptions as well as the interest checklists and two- to three-week screens. The DCE student created a log that was used to keep a trajectory of the patients discharged within the memory care unit and to designate approximate dates for the screens in order to assure staff carryover and determine if there has been a decline in functioning or participation. With the documents that are established, it is possible to continue with the implementation of the FMP to maximize the QoL of individuals with dementia; thus, goal two has been met. Future therapy students or current therapy staff can now have the resources to look QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 25 deeper into the structure of the program and continue to develop and improve it into something more such as implementing the program throughout the entire LTC facility. In order to continue with the current maintenance of the program, the DCE student set up a couple procedures with staff at the facility. First, the PowerPoint, that was initially presented to nursing staff, was created into a paper-based one-on-one presentation that is to be reviewed with each new hire working within the memory care unit. Once educated, the new hire will sign their name on the created log indicating that they have been educated and has reviewed and understands the content within the PowerPoint such as the purpose of the FMP, the importance of activities and commitment to the program, as well as a review of the levels of dementia and activity adaptations per cognitive level. The DCE students mentor agreed that an additional inservice will be held yearly for all nursing staff as a review of the previous content. Finally, the family of the resident received a copy of their family members completed activity prescription as a tactic to hold the nursing staff and aides accountable for the activity recommendations and adaptations that was established by the DCE student. Throughout the past several weeks at the facility, the FMP has been implemented with nine residents within the secured memory care unit and is currently in the process with an additional two residents that are still receiving skilled therapy services. The DCE student completed three-week post-screens on three residents indicating that there has not been any changes in current ADL functioning; however, out-of-bed activity participation has greatly decreased in one resident since discharge from both physical and occupational therapy. Potential reasoning for the decrease in activity could be due to staff carryover, reduced one-on-one activity intervention, or from the large increase in census since the residents discharge from therapy. QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 26 Kolanowski and colleagues (2011) suggested that residents may expect the activities that provide them with daily stimulation and may undergo poor consequences when the activities are no longer provided routinely, such as discharge from therapy. The DCE student provided the nursing staff with education on additional strategies to promote participation in activities based on the residents cognitive level as well as a review of the importance of activities to reduce the risk for functional and cognitive decline and ultimately increase QoL; therefore, goal three has been met throughout this DCE. There is a need for continued improvement within the program however the FMP is responding to the society needs within the facility. One of societys needs is to reduce the impact that dementia has on an individuals functioning and independence (Poulos et al, 2017). As a person ages, they gain a higher risk for disability and functional limitations (Palgi et al., 2015). Occupational therapy can provide a nonpharmacological approach to treatment (Ojagbemi & Owolabi, 2017) and have the knowledge to tailor activities to the individual (Gitlin et al., 2009). The process created by the DCE student will continue to be carried out by the OTs within the facility. An OT will complete an assessment to determine the individuals functional limitations as well as their functional abilities that remain. Occupational therapists can then use their knowledge to provide skilled intervention to maximize those abilities and promote participation in ADLs and leisure activities to reduce the risk for decline. The activity prescription is completed as an additional method to communicate the individuals abilities and how to maximize their participation in activities through their likes and interests as well as activity adaptations to allow them to participate at the best of their ability based on their cognitive level. Additional research suggested that the approach for treatment of these individuals should focus on maintaining their functional abilities, regaining the skills that QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 27 have been lost, and adapting the activity to maximize participation (Poulos et al., 2017). The DCE student created the FMP as a system to do just that; thus, meeting goal number one of this experience. All humans need activity (Kolanowski et al., 2011). Personalized activities provides increased engagement and may help reduce the rate of cognitive and physical decline that is typically associated with dementia (Kowanowski et al., 2011). Throughout the OT process and establishment of the activity prescription for an individual, the DCE student utilized the persons interests and abilities to create and implement activities as a part of skilled intervention. The purpose of these activities was to not only promote strength, activity tolerance, and standing balance, for example, but also maximize their participation in out-of-bed activities to reduce excess disability (Fraizer & Moore, 2010) and potential for physical and cognitive decline (Kolanowski et al, 2011). Research suggest that individuals residing in a nursing home tend to be unoccupied for the majority of the day (Smit et al, 2015). The DCE student created the FMP to included engaging the individuals in daily group activities tailored to the cognitive levels, as stated on the activity prescription, in order to maintain client factors and reduce decline. As suggested by Palgi and colleagues (2015), individuals who have a high QoL have a reduced risk for functional decline in the later years. By providing activities on memory care units, the QoL may improve by providing enjoyable activities (Hindt et al., 2018) and that staying active and involved in activities contributes to a higher QoL (Morhardt, 2004). Steultjens and colleagues (2004) suggest that OT-based interventions can help improve QoL by improving the individuals functional abilities. The DCE student designed the FMP to evaluate the functional abilities of the individual as well as their interests and provide interventions to QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 28 maximize their best ability to function with varying occupations based on their cognitive level. The development of the activity prescription included strategies to allow the person to participate at their highest functional level and provided ideas to maximize their participation in daily activities. The ultimate goal of the FMP is for all team members to allow the resident to achieve a high QoL and maintain it (Warchol, 2004). Overall Learning The DCE student has gained a great increase in general knowledge about how to foster a professional role and be a leader to organizing a FMP for the LTC facility throughout this experience of program development. The DCE student reviewed literature on multiple areas to gain a better understanding of the dementia population and the need for structured programing and activities in order to increase the QoL of these individuals residing on the memory care unit. Prior research in dementia-care programing has guided the DCE student in the creation the of FMP at the facility. Multiple pieces of literature expressed OTs role in dementia care and how they have the knowledge to tailor activities to the individual based on varying cognitive levels. The ACL provided a framework on assessing an individuals cognitive level and provided a guide on how to tailor activities to them in order to maximize the participation in functional and leisure activities (Allen et al, 1995). Throughout this experience, the DCE student learned how to utilize the therapeutic use of self to communicate with each of the residents as well as families and staff at the facility in a professional manner. The DCE student has determined that communication is a large aspect of making a program successful. By this experience, the DCE student learned that in order for a program to become effective and successful, other members of the team need to understand the purpose and QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 29 the components of the program. Written documents and educational sessions, both through inservices and through one-on-one consultation, were needed in order to create a buy-in for the staff by communicating a need for the program and how to make the FMP successful. Collaboration with additional therapists, nursing staff, and aides was required from the DCE student to master the whole impression of each resident within the memory care unit to understand their likes and interests as well as their best ability to function with self-care tasks and through daily activities. Once the activity prescription had been completed, the DCE student educated the nursing staff and aides on the components as well as the individuals family, if applicable. The DCE student learned that taking on a professional role required assertiveness, motivating others, and demonstrating excitement for what the program has to offer. The DCE student also provided advocacy for the role of OT as well as the need of the FMP throughout the experience at the facility. The nursing staff had a general understanding of the purpose of OT however required increased education on how OT can promote engagement in activities and increase overall QoL of these individuals by utilizing a habilitative approach to intervention. The DCE student provided additional explanation of OTs role to family members of the residents within the unit. Several families reported that their family member does not need therapy services however, when the DCE student explained the purpose of OT in the creation of the FMP, family members were very willing and were engaged throughout the establishment of the activity prescription for their loved one. One family member in particular volunteered her time to implement an activity group approximately one time per week in order to increase the activity participation of others within the unit. By the end of this experience, families, nursing QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 30 staff and aides, as well as the additional therapists understood the importance of activities for these individuals and had a respect for the OT profession specifically with dementia care. Taking on a leadership role throughout the experience required a lot of patience, time, hard work, and confidence. Once the DCE student initially established the FMP, it was important to continue to communicate with each team member in order to make the program successful. The DCE student has educated the therapy staff on how to continue with the implementation of the activity prescription and how to assure the FMP will continue to be successful. Throughout this experience, additional OTs and OTAs have begun to taking the lead, through mentorship by the DCE student, on providing skilled interventions to the individuals on the memory care unit and has done a great job with implementing the activity prescription and educating staff and family on the document. The DCE student has demonstrated confidence throughout the entire process of implementation of the program. Conclusion The DCE student has created a successful FMP as well as provided education to the nursing staff on the importance of structured activities, how to tailor activities to the residents cognitive levels, and how to implement the activity prescription to maximize the individuals participation in ADLs and out-of-bed activities. The DCE student has also provided education and multiple documents to the therapy staff on how to utilize the habilitative approach to intervention, complete of the activity prescription, and continue with the sustainment of the FMP. By the DCE student providing the facility with education and documents, the success of the FMP is expected to continue. QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 31 References Allen, C. K. (1987). Activity: Occupational therapys treatment method. The American Journal of Occupational Therapy, 41(9), 563-575. Allen, C. K., Blue, T., & Earhart, C. A. (1995). Understanding cognitive performance modes. Ormond Beach, FL: Allen Conferences Inc. Alzheimers Disease International (n.d.). Dementia statistics. Retrieved from: https://www.alz.co.uk/research/statistics American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. Bonnel, W. & Smith, K. V. (2018). Proposal writing for clinical nursing and DNP projects, Second edition. New York: Springer Publishing Company. Bradshaw, S. A., Playford, E. D., & Riazi, A. (2012). Living well in care homes: A systematic review of qualitative studies. Age and Aging, 41(2), 429-440. Brod, M., Stewart A., Sands, L., & Walton, P. (1999). Conceptualization and measurement of quality of life in dementia: The dementia quality of life instrument (DQoL). Gerontologist, 39, 25-35. Chabot, M. (2013). Review of programs to support engagement of older adults with mild to moderate dementia. Gerontology Special Interest Section Quarterly, 36(1), 1-4. Colby, S. L. & Ortman, J. M. (2014). The baby boom cohort in the United States: 2012 to 2060. United States Census Bureau. Retrieved from: https://www.census.gov/prod/2014pubs/p25-1141.pdf QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 32 Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. David, S. K. & Riley, W. T. (1990). The relationship of the Allen cognitive level test to cognitive abilities and psychopathology. The American Journal of Occupational Therapy, 44(6), 493-397. Dementia Care Specialists (2016). Dementia capable care: Foundation course. Crisis Prevention Institute. Versailles Healthcare Center. Earhart, C. A. (2013). A brief history of the cognitive disabilities model and assessments. Retrieved from: https://allencognitive.com/wp-content/uploads/Click-on-Brief-Historyof-CD-model-2013-2FINAL.pdf Eastham, A. J. & Cox, D. (2017). Dementia-friendly wards. International Journal of Health Governance, 22(1), 25-36. Fraizer, A. & Moore, B. (2010). How dementia stages impact nursing in long-term care. Crisis Prevention Institute. Retrieved from: https://www.crisisprevention.com/Blog/November2010/How-Dementia-Stages-Impact-Nursing-in-Long-Term-Ca Fraker, J., Kales, H. C., Blazek, M., Kavanagh, J., & Gitlin, L. N. (2014). The role of the occupational therapist in the management of neuropsychiatric symptoms of dementia in clinical settings. Occupational Therapy in Health Care, 28(1), 4-20. doi: 10.3109/07380577.2013.867468. Gately, M. E. & Trudeau, S. A. (2017). Occupational therapy and advanced dementia: A practitioner survey. Journal of Geriatric Mental Health, 4, 48-53. Gilfoyle, E. M. (1989). Leadership and occupational therapy. The American Journal of QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 33 Occupational Therapy, 43(9), 567-570. Gitlin, L. N., Winter, L., Earland, T. V., Herge, E. A., Chernett, N. L., Piersol, C. V., & Burke, J. P. (2009). The tailored activity program to reduce behavioral symptoms in individuals with dementia: Feasibility, acceptability, and replication potential. The Gerontologist, 49(3), 428-439. doi: 10.1093/geront/gnp087. Hindt, A., Morris, J., Sohre, J., & Buchanan, J. (2018). The effects of Montessori-based activity on affect and engagement in persons with dementia. Journal of Aging and Geriatric Medicine, 2(2), 1-4. doi: 10.4172/2576-3946.1000119. Hoe, J., Hancock, G., Livingston, G., & Orrell, M. (2006). Quality of life of people with dementia in residential care homes. British Journal of Psychiatry, 188, 460-464. Kolanowski, A. M. & Buettner, L. (2008). Prescribing activities that engage passive residents: An innovative method. Journal of Gerontological Nursing, 34(1), 13-18. Kolanowski, A. M., Buettner, L., Costa, P. T., Jr, & Litaker, M. S. (2001). Capturing interests: Therapeutic recreation activities for persons with dementia. Therapeutic Recreation Journal, 35, 220-235. Kolanowski, A., Litaker, M., Buettner, L., Moeller, J., & Costa, P. T. (2011). A randomized clinical trial of theory-based activities for the behavioral symptoms of dementia in nursing home residents. Journal of American Geriatric Society, 59(6), 1032-1041. doi: 10.1111/j.1532-5415.2011.03449.x. Malone, M. L. & Camp, C. J. (2007). Montessori-based dementia programming: Providing tools for engagement. Dementia: The International Journal of Social Research and Practice, 6, 150-157. QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 34 Morhardt, D. (2004). Top 10 ideas for enhancing quality of life by diagnosed individuals and families living with Alzheimers disease and related dementias. Alzheimers Care Quarterly, 5(2), 103-107. Ojagbemi, A. & Owolabi, M. (2017). Do occupational therapy interventions improve quality of life in persons with dementia? A meta-analysis with implications for future directions. Psychogeriatrics, 17, 133-141. doi: 10.1111/psyg.12201. Olsen, C., Pedersen, I., Bergland, A., Enders-Slegers, M. J., Joranson, N., Calogiuri, G., & Ihlebaek, C. (2016). Differences in quality of life in home-dwelling persons and nursing home residents with dementia A cross-sectional study. BMC Geriatrics, 16(137), 1-11. doi: 10.1186/s12877-016-0312-4. Palacios-Cea, D., Gmex-Calero, C., Cachn-Prez, J. M., Velarde-Garca, J. F., MartnezPiedrola, R., & Prez-De-Heredia, M. (2016). Is the experience of meaningful activities understood in nursing homes? A qualitative study. Geriatric Nursing, 37, 110-115. doi: 10.1016/j.gerinurse.2015.10.015. Palgi, Y., Shrira, A., & Zaslavsky, O. (2015). Quality of life attenuates age-related decline in functional status of older adults. Quality of Life Research, 24, 1835-1843. doi: 10.1007/s11136-015-0918-6. Poulos, C. J., Bayer, A., Beaupre, L., Clare, L., Poulos, R. G., Wang, R. H., . . . McGilton, K. S. (2017). A comprehensive approach to reablement in dementia. Alzheimers & Dementia: Translational Research & Clinical Interventions, 3, 450-458. doi: 10.1016/j.trci.2017.06.005. Raia, P. & Koenig-Coste, J. (1996). Habilitation therapy. Alzheimers Association of Eastern QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 35 Massachusetts Newsletter, 14(2), 1-2, 4-6. Scaffa, M., Reitz, S. M., & Pizzi, M. A. (2010). Occupational therapy in the promotion of health and wellness. Philadelphia: F.A. Davis Company. Smit, D., de Lange, J., Willemse, B., Twisk, J., & Pot, A. M. (2015). Activity involvement and quality of life of people at different stages of dementia in long term care facilities. Aging and Mental Health, 20(1), 100-109. doi: 10.1080/13607863.2015.1049116. Steultjens, E. M., Dekker, J., Bouter, L. M., Jellema, S., Bakker, E. B., & van den Ende, C. H. (2004). Occupational therapy for community dwelling elderly people: A systematic review. Age and Aging, 33, 453-460. Warchol, K. (2004). An interdisciplinary dementia program model for long-term care. Topics in Geriatric Rehabilitation, 20(1), 59-71. World Health Organization, (2006). Constitution of the World Health Organization Basic documents (45thed.) (Suppl.). Retrieved from: https://www.who.int/governance/eb/who_constitution_en.pdf QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA Figure 1. SWOT Analysis for the Memory Care Unit Figure 1. Strengths/weaknesses/opportunities/threats analysis of the memory care unit at the SNF. Established through observation and interviews during the doctoral capstone experience. 36 QUALITY OF LIFE IN INDIVIDUALS WITH DEMENTIA 37 Figure 2. SWOT analysis for the Therapy Department Figure 2. Strengths/weaknesses/opportunities/threats analysis of the therapy department, specifically OT, at the SNF. Established through observation and interviews during the doctoral capstone experience.  ...

... Improving Quality of Life Through Peer Support After Sustaining a Spinal Cord Injury: A Doctoral Capstone Experience Jessica Schumm 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: Brenda Howard, DHSc, OTR Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 1 A Capstone Project Entitled Improving Quality of Life Through Peer Support After Sustaining a Spinal Cord Injury: A Doctoral Capstone Experience 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 Jessica Schumm Occupational Therapy 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 Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 2 Abstract Individuals with a spinal cord injury (SCI) deal with various secondary complications that can affect their physical, emotional, and social health (Sezer et al., 2015). Having support from ones community can enhance these areas of health (Ekelman et al., 2017). Therefore, a support group was created to provide peer support and education in regard to the variety of complications that can arise after a SCI. A former patient with a SCI from the Rehabilitation Hospital of Fort Wayne and the DCE student prepared for and facilitated group sessions collaboratively. Flyers were distributed to several locations within the community that may serve individuals with a SCI. In addition, letters were sent out to former patients with a SCI from the rehab facility. At each group session, research-based education was given in addition to personal experiences shared from an individual who is living with a SCI. Upon completion of the support group, members reported they would recommend the group to others, and enjoyed receiving evidenced-based research along with advice from a peer. All group members excluding one reported they learned something new at the group sessions they attended, and the group member who did not learn something new has been coping with a SCI for several years and has increased knowledge in regards to secondary complications. The former patient from the facility will continue to lead group sessions for sustainability, and the site mentor was educated on the importance of having a future student continue to develop the support group as it grows. Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 3 Literature Review Introduction Individuals who have sustained a spinal cord injury (SCI) may have to deal with a variety of acute or chronic complications (Hagen, 2015; Sezer et al., 2015). These complications can be dangerous or life threatening; therefore, it is important for individuals to receive education in regard to them (Hagen, 2015). In addition, ones social participation can be impacted by secondary complications (Craig et al., 2015), making it crucial for individuals to learn how to cope with them. The acute complications of a spinal cord injury occur 2-48 hours after the individual has sustained their injury (Hagen, 2015), while chronic complications come after this period and last throughout the rest of life (Sezer et al., 2015). Within the acute rehabilitation setting, the education given to patients with a spinal cord injury will be more focused on the chronic secondary complications. Education within this setting may not be as in-depth as it should; therefore, individuals may not be appropriately equipped to handle complications as they arise. Theory & Model The model that will guide this doctoral capstone experience (DCE) is the PersonEnvironment-Occupation-Performance (PEOP) model (Cole & Tufano, 2008). One is said to be functioning within this model when they can participate in meaningful occupations while balancing environmental demands (Cole & Tufano, 2008). Dysfunction within this model is a limitation in occupational performance, leading to a lack of competence (Cole & Tufano, 2008). Motivation comes from mastery of occupations within ones environment, which then leads to self-fulfillment (Cole & Tufano, 2008). After sustaining a spinal cord injury, one may experience a lack in occupational performance, while also struggling to adapt to their environment. Using Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 4 the PEOP as a guide during this experience will keep patient care and the support group created occupation-based and client-centered. A main focus will be seeking a new level of mastery in meaningful occupations among this population, all while ensuring their environment best suits their needs. Finding what is meaningful to the client(s) will be important when treating individuals and formulating discussion topics for the support group. This will become the center of treatment and education in order for the individual to gain self-fulfillment. The frame of reference (FOR) that will guide this project is the Rehabilitation FOR. Within the rehabilitation FOR, there is a focus on adaptation, modification, and compensation as one may not be able to completely restore the deficits they have (Cole & Tufano, 2008). The rehabilitation model focuses on making individuals independent by adapting, modifying, and compensating as needed (Cole & Tufano, 2008). Because the support group will focus on education on a wide variety of issues, and patients will need various treatments, this broad FOR is appropriate to guide the DCE. A spinal cord injury can drastically alter ones life. These individuals have to learn to adapt to their new condition and rely on different parts of their body to complete daily tasks. They may need education on and practice with adaptive equipment, home modifications, and compensatory techniques to be the most independent they can be. Therefore, following this FOR will work to return individuals with a SCI to completing meaningful occupations with independence. Secondary Complications of Spinal Cord Injury Several secondary complications can arise after a SCI (Sezer et al., 2015). Respiratory complications are common within this population, and the severity depends on the level of the SCI (Sezer et al., 2015). Respiratory failure, respiratory dysfunction, sleep-related respiratory disorders, pneumonia, and atelectasis are common conditions that an individual may experience Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 5 (Sezer et al., 2015). Positioning, breathing exercises, suctioning, and a variety of other treatments are done to help manage these symptoms (Sezer et al., 2015). Cardiovascular complications are also common within individuals with a SCI (Sezer et al., 2015). Orthostatic hypotension and autonomic dysreflexia are two common conditions that practitioners and individuals need to be aware of (Sezer et al., 2015). Abdominal binders and pressure socks are common methods used to prevent orthostatic hypotension, while autonomic dysreflexia is managed by learning to prevent the issues that may cause it (Sezer et al., 2015). Bladder and bowel dysfunction are also common problems one may deal with after sustaining a SCI (Sezer et al., 2015). Individuals may need to learn how to insert catheters for bladder management and manage a bowel program (Sezer et al., 2015). Another common complication is spasticity, which impacts about 70% of individuals who have a SCI (Sezer et al., 2015). Spasticity can lead to a variety of impairments such as contractures, pain, and ulcers, and can be managed with or without the use of medication (Sezer et al., 2015). After sustaining a SCI, one may also experience chronic pain that can negatively impact social and community participation (Sezer et al., 2015). Individuals can develop nociceptive pain from overuse of muscles in the upper extremity, depending on the level of injury (Sezer et al., 2015). Neuropathic pain can occur anywhere in the body, no matter where the level of the lesion is (Sezer et al., 2015). Pain can be treated with the use of medications, surgical intervention, or a variety of modalities (Sezer et al., 2015). Skin care is something about which these individuals need to receive education, as one can develop pressure ulcers (Sezer et al., 2015). These can be life threatening if not managed appropriately, and cause functional impairments (Sezer et al., 2015). Pressure ulcers can develop from lack of sensation, immobility, moisture, and a variety of other factors (Sezer et al., 2015). One should be educated on daily skin inspections, pressure- Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 6 relief postures, nutrition, and proper hygiene of the skin to prevent pressure ulcers (Sezer et al., 2015). One final complication includes osteoporosis and bone fractures (Sezer et al., 2015). These individuals may experience bone loss, which can cause fractures to occur (Sezer et al., 2015). Osteoporosis and bone fractures can be managed with medication or by performing weight-bearing exercises, walking with the use of an orthosis, and standing (Sezer et al., 2015). It is crucial that one be aware of these secondary complications when recovering from a spinal cord injury, as they can potentially be life threatening (Sezer et al, 2015) and affect one physically, socially, and emotionally. Facilitators and Barriers to Social Participation According to Barclay et al. (2015), there are a variety of facilitators and barriers to social participation after sustaining a spinal cord injury. Individuals with a SCI stated that environmental resources such as transport play a big role in encouraging social participation (Barclay et al., 2015). However, they also report that transportation can be difficult due to the lack of accessibility (Barclay et al., 2015). Transport can prohibit individuals from getting to and from their job and other leisure activities (Barclay et al., 2015), which may result in unemployment or decreased community participation. Researchers have found that unemployment was associated with poor social participation (Craig et al., 2015). Other resources such as technology were said to enhance social participation by connecting individuals to others in society (Barclay et al., 2015). Financial resources can either facilitate or hinder social participation (Barclay et al., 2015). Individuals with a SCI reported that sufficient financial resources resulted in better equipment to facilitate social participation, while it also decreased motivation to perform at maximal potential (Barclay et al., 2015). Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 7 Researchers also found that other individuals such as family, friends, caregivers, and health professionals affect engagement within society (Barclay et al., 2015). Individuals with a SCI identified social support as a facilitator to social participation (Barclay et al., 2015). This support was important for individuals to have when learning to adapt to their injury (Monden et al., 2014), and should be a main goal of ones rehabilitation (Craig et al., 2015). However, having a relationship with healthcare professionals could either be a facilitator or barrier to social participation (Barclay et al., 2015). Some individuals with a SCI associated them with positive experiences, while others felt that they were stigmatized by healthcare professionals based on the level at which their injury was, and also felt they were not given adequate education for return to work options (Barclay et al., 2015). In addition, many people had to rely on others to care for them, especially if their level of injury was higher and they required more assistance (Barclay et al., 2015). Individuals felt that they had to choose between focusing on self-care and leisure/social participation when receiving care, depending on how much compensation they received for services (Barclay et al., 2015). Those who received more compensation felt they had better access to going out in the community, while those who did not receive compensation felt their care was limited to self-care (Barclay et al., 2015). While individuals identified having other people for support as important, they also discussed that it is important not to be treated differently while in society as this could hinder social participation (Barclay et al., 2015). While social participation is impacted by secondary health concerns (Craig et al., 2015), some individuals stated that learning how to cope with them allowed them to continue to participate in society (Barclay et al., 2015), which further justifies the need for support and education in regards to complications. Despite having physical concerns, this population identified mental health concerns, such as depression, as a barrier to social participation (Barclay Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 8 et al., 2015). Individuals stated depression often came soon after discharge, which led to social isolation during the initial stages of recovery (Barclay et al., 2015). Therefore, it is important that healthcare professionals address this concern and ensure that improving self-efficacy is a key part of the rehabilitation process (Craig et al., 2015). Sexuality after a Spinal Cord Injury Currently, there is a gap in the literature on sexuality after a SCI, resulting in a lack of evidence to address sexuality barriers (Fritz et al., 2015). When interviewing a variety of women, researchers found that they had a variety of perspectives on sexual intimacy, but most still wanted to engage in intimacy (Fritz et al., 2015). Some women reported that they were more satisfied with their sexuality than before their injury; however, there was dissatisfaction reported by both married and unmarried individuals (Fritz et al., 2015). Dissatisfaction was caused by lack of a partner, relationship difficulties, and physical barriers such as fatigue and complications with secondary issues (Fritz et al., 2015). Many women identified the lack of education as a challenge when engaging in sexual activity (Fritz et al., 2015). While receiving information about childbirth and pregnancy was important, they felt that the education they received from healthcare professionals was focused only on reproduction, and did not focus on positioning and safe ways to engage in sexual activities (Fritz et al., 2015). Individuals wanted more detailed education from medical professionals in regard to dealing with secondary complications while participating in sexual activities (Fritz et al., 2015). Finally, these women discussed sexual confidence when engaging in sexuality (Fritz et al., 2015). They reported it was important to build self-esteem to accept the physical challenges of a SCI and see oneself as worthy of an intimate relationship (Fritz et al., 2015). This was especially true for individuals who did not Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 9 have a partner before their injury, as they expressed more difficulty finding intimate relationships (Fritz et al., 2015). Peer Support Peer support was identified as a facilitator to both social participation (Barclay et al., 2015) and self-management (Munce et al., 2014) when learning to cope with a SCI. Individuals with a new SCI reported it was helpful to be paired up with someone who was several years postinjury (Munce et al., 2014). Those who were newly injured reported that it was valuable to share their fears with someone who had experienced living with a SCI, and could offer advice and expectations (Munce et al., 2014). Others reported that having a peer mentor gave them hope for the future (Barclay et al., 2015). They stated that seeing individuals who were further along in their recovery participate in society allowed them to have hope for their future potential to engage in their community (Barclay et al., 2015). Project Aim As shown in the literature, an individual with SCI can encounter a wide variety of issues related to their physical health, mental health, social participation, and sexuality. Because literature found that having support in the community led to enhanced quality of physical, mental, and social health (Ekelman et al., 2017), the project aim will be to create a support group for individuals coping with the many complications of a SCI. The support group will provide education about a variety of the issues mentioned above, while also enhancing their social participation. Individuals will be able to have support from their peers who have lived through the experience of dealing with a SCI, which will seek to enhance the quality of life among this population. Screening/Evaluation Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 10 Findings A needs assessment was conducted in order to evaluate the goals for the support group. While following the PEOP model, both extrinsic and intrinsic factors were discussed as they both have an impact on occupational performance (Christiansen et al., 2011). The needs assessment consisted of several questions in regards to the positive and negative aspects of living with a SCI. After interviewing the client, it is evident that there are a variety of needs that individuals with a SCI have. The client interviewed has been living with a SCI for about 20 years, and talks about a variety of complications he has dealt with throughout the recovery process. Extrinsic Factors. When asked what the most challenging aspect of recovery was, he stated that he often has to rely on others. He explained that this was difficult as not all individuals could be relied on. This is consistent with findings from literature in which individuals with a SCI stated they often had to rely on others for their care, and often had to prioritize their self-care above their social participation when receiving care (Barclay et al., 2015). During the interview, the client also discussed things that keep him from going out and participating in the community. He stated the weather and transportation often prevented him from socially participating within society. According to Barclay et al. (2015), transport could be a facilitator or barrier to social participation. In this clients case it was a barrier as he had to arrange for public transportation when going out into the community. The DCE students site mentor also discussed feeling that transportation is a significant barrier for this population. She encouraged that individuals be notified of support groups as far in advance as possible to ensure they are able to arrange appropriate transportation as not all of them are able to drive. Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 11 Intrinsic Factors. The client also discussed a variety of secondary complications that he has dealt with and received education on. He mentioned the following complications during the interview: skin breakdown, autonomic dysreflexia, mental health challenges, sexuality, and bowel and bladder issues. According to Sezer et al. (2015), there are a variety of secondary complications that arise after sustaining a SCI, and all the ones the client mentioned were also mentioned in research. Literature also suggests that these secondary complications can affect social participation (Craig et al., 2015). The client also discussed feeling this way, and especially felt that skin breakdown negatively impacted his social participation. When asked about sexual needs, he felt it was extremely important to address this in healthcare and within the support group, as it is something not all practitioners give education on. This is consistent with findings from literature, which state that individuals want more detailed education in regards to sexuality after a SCI (Fritz et al., 2015). Finally, when asked what the most positive component of dealing with a SCI has been, the client expressed that he has been able to serve as an inspiration to others. Because findings in literature have stated that having a peer mentor several years postinjury is beneficial to individuals with a SCI (Munce et al., 2014), this individual will serve as an excellent leader when giving support to others, and can hopefully be an inspiration to them too. Not only will he be able to discuss his own experiences of coping with a SCI during group sessions, but he will be able to receive support from the other individuals that attend the support groups. When discussing the needs among this population with the site mentor at the DCE site, she provided feedback about teaching this population to be leaders in their care. It is important that mental health needs are addressed and that interventions be education-based in order to promote confidence among these individuals. They need to be able to educate their caregivers and lead others in their care when receiving assistance from them. Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 12 Addressing Occupational Deficits. All of the extrinsic and intrinsic factors the client mentioned he has dealt with and continues to deal with will be addressed in the support group to improve occupational performance deficits (Refer to Table 1). In turn, this group will be a place for individuals to come to receive social support from their peers, while also receiving education on issues they may have never dealt with. Because education- and prevention-based interventions are effective within community settings (Christiansen, 2011), the support group will focus on giving individuals the appropriate information they need to prevent complications from occurring as well as how to deal with them if they do occur. In addition, this group will seek to improve social participation, leisure participation, and ADL performance among individuals with a SCI as it can be greatly affected after sustaining a life-changing injury. In addition, the DCE students site mentor encouraged talking about return-to-drive options if appropriate as it is an occupation that is deprived among this group. It prohibits them from going out in the community, and is important to give education on if individuals are able to return to driving with appropriate modifications. After each group session, an outcome measure will be given to evaluate whether or not the goals were attained and if occupational deficits were addressed as this is an important aspect to consider when conducting future support groups (Christiansen, 2011). Table 1. Findings Extrinsic and Intrinsic Factors Relating to Occupational Performance Extrinsic Factors -Relying on others for care -Weather -Transportation Intrinsic Factors -Skin breakdown -Autonomic dysreflexia -Mental health challenges -Sexuality -Bowel and Bladder Issues Occupational Performance Areas Affected -Social participation -Leisure participation -ADL performance (toileting, sexuality) -Driving Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 13 Needs Assessment Across a Variety of Practice Areas Addressing the problem areas identified could look different across a variety of practice settings. This support group will be conducted within the acute rehabilitation setting; however, individuals from the community are invited to join. The client who completed the needs assessment has been living with a SCI for several years, therefore he has had a lot of experience with secondary complications that can arise. The results of this needs assessment would most likely be different from one within the acute care or acute rehabilitation setting who may not have experienced many of these complications. Within the acute care setting, individuals may not be aware of the danger of these complications due to the newness of their injury. In acute rehabilitation, individuals are beginning to experience some of the secondary complications while also receiving education from healthcare professionals on managing complications. An individual in an outpatient setting will most likely be aware of the wide variety of secondary complications that can arise, and may have experience with many of them. Therefore, the needs assessment in this setting may be more similar to that of the client interviewed above. It is important to consider each of these settings as all individuals with SCI are welcome to join the support group, which will result in a variety of needs based upon where the individual is at in the recovery process. Implementation Implementation consisted of leading the support group alongside a former patient from the facility the DCE student is currently at. Flyers were distributed at various locations and recruitment was also done by word of mouth. In addition, flyers were sent to former patients with Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 14 a SCI, along with a personalized letter from their treating therapist during their stay at the rehab facility. It was ensured that this process was done appropriately to maintain patient confidentiality. A PowerPoint presentation covering skin care was then created to guide the support group. The DCE student provided evidence-based education over the topic, and the former patient added in information from his personal experiences with the topic. During the group, the leaders discussed how issues with pressure ulcers can greatly affect occupational performance. The DCE student gave education on techniques to relieve pressure and how to perform skin checks appropriately while others in the group discussed strategies that have worked for them to overcome issues with pressure ulcers. Introductions and education were done for about the first 30-40 minutes, and for the last hour the group had a discussion. Discussion questions were formulated prior to beginning the support group, however were not needed as individuals had a very rich discussion about the topic addressed. At the close of the support group, an outcome measure was given (see Table 2), which consisted of seven yes or no questions, with one open-ended question at the end. Table 2. Outcome Measure Post-Group Survey Would you recommend this support group to a friend/peer? Did you learn something today you did not already know? Was there enough time for discussion at the end of the session? Did the environment feel supportive and encouraging? Did the day and time work for your schedule? Please state alternative dates/times if necessary. Would you like a printout of the topics to be discussed in future weeks? Is there anything you would change about the way the group session was lead? If yes, please specify, as your feedback would be greatly appreciated! You can also talk to me after the Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 15 session if you wish to verbally give feedback. Leadership Throughout the implementation phase, it was critical that the DCE student demonstrated effective leadership skills. The student had to initiate communication with a wide variety of individuals when printing off flyers, obtaining personalized letters to mail to former patients, distributing flyers to facilities, working alongside a former patient to formulate an educational presentation, and ensuring appropriate technology/resources were available to present our presentation. Implementing the first support group required the DCE student to demonstrate effective communication when talking to various individuals about the purpose of the group, and asking what was needed from them to prepare for this phase. The DCE student also had to be organized and manage time effectively in order to ensure flyers were distributed in a timely manner. Several weeks before the support group, the DCE student made a checklist of tasks that needed to be completed prior to implementation to ensure that she was appropriately prepared. In addition, the student prioritized these tasks and completed them accordingly. As a result of implementation, the DCE student now feels more comfortable with leadership skills and felt much more confident going into the second support group. Staff Development The staff at the rehab facility showed increased interdisciplinary communication during the implementation phase. The DCE student had to communicate with therapists about letters being sent to former patients with a SCI. Therapists then had to communicate with one another to formulate an appropriate letter for their former patient. In addition, several therapists came to the DCE student asking for flyers to distribute to places or individuals they felt were appropriate. Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 16 They were all very engaged throughout the implementation phase, and supportive in the recruitment process. When formulating educational materials the DCE student had conversations with several therapists about their experiences when working with patients with SCIs. There were topics related to skin care that the student wanted to know more about, and the staff were very willing to sit down and give education as necessary. Throughout this process they also bounced questions off of each other, which in turn lead to an educational experience for them. Upon completion of the support group, the staff were very interested about the results of the group, and have continued to assist with implementation as the DCE student prepared for the second group session. Outcome and Discontinuation At the end of the first group session, the group provided positive verbal feedback and stated they enjoyed the way in which material was presented. They reported they felt it was beneficial to have education that was research-based, while also receiving education from someone who had actually lived through the experience. Each member stated they would recommend this support group to a peer. Members present also provided positive feedback about the date and time of the support group, and were encouraged to communicate any conflicts with future times and dates. At the second support group, similar feedback was given from individuals who also attended the first support group. There was a new group member present at the second session, and she had been dealing with her SCI for several years. She stated that she did not learn anything new from the education given over clothing and hygiene, but still provided positive feedback about the delivery of information and stated she would recommend this group to a peer. Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 17 In addition, all members from both group sessions reported they felt the environment was supportive and encouraging. Continuous Quality Improvement Because there were only three members present at each of the support groups, the DCE student is currently trying to improve participation by seeking out feedback from those who did not attend. Letters to former patients were sent out again with contact information attached in which they were encouraged to provide feedback about the date/time of the support group. They were also encouraged to reach out if they wished not to receive additional information about the group. The DCE student is hopeful that this will improve the quality of the group by bringing in additional members. It is important to have diverse individuals present as they may provide additional support. Factors such as level of injury, time since injury, and gender may improve quality of the group and provide various perspectives. Sustainability To ensure carryover after the DCE student leaves the facility, she will be meeting with the patient who has been assisting with leading the support groups before leaving the facility. The student will give him evidence-based education in regards to future topics, and hopes to provide him with educational handouts for the next couple of support group sessions. Therefore, the groups will still have evidence-based education to improve occupational performance while also discussing their own personal experiences. In addition, the DCE student plans to educate her site mentor about the benefits of having a future DCE student at this facility. Future students could continue to work alongside this patient to provide education to this population, while also assisting to facilitate group sessions. They could organize for guest speakers to come in as the group grows in the future. Many of the group members have expressed that they feel it would be Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 18 beneficial to have people from the community come in to speak about wheelchair modifications, driving modifications, vocational rehab, and procedures that can be done after a SCI. The future DCE student could communicate with these individuals and work to set up times for them to speak to the group. Further down the road as the group continues to grow, other DCE students could work to facilitate various group sessions based on a variety of factors. Support groups could be facilitated based on level of injury, time since injury, and male versus female complications while living with a SCI. Meeting Societal Needs This support group worked and is working to meet societal needs by promoting peer support and social participation among individuals with a SCI. Decreased social participation among individuals with a SCI is a societal problem as they have many barriers to participating in their community, which may lead to a lower quality of life. (Barclay et al., 2015). Transportation can be inaccessible for these individuals, which could lead to possible unemployment (Barclay et al., 2015). In addition, they have to rely on other individuals to care for them and may have to prioritize self-care above social participation when receiving care (Barclay et al., 2015). When in society, many of these individuals feel they are treated differently, which hinders their participation within the community (Barclay et al., 2015). Finally, social participation among individuals with a SCI is impacted by secondary health concerns (Craig et al., 2015). Within the support group the DCE student has created, she is promoting social participation by giving them a place they can come to receive education and peer support in regards to the difficulties they are facing. The student is also working to get feedback from individuals regarding the meeting time due to the possible difficulty with transportation to and from support groups and difficulties finding time for leisure/social participation. The DCE Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 19 student is hopeful that once feedback is received, she can alter the group to better meet the needs of this population. Overall Learning Communication Throughout this process, the DCE student had to initiate communication with a wide variety of individuals via email, face to face communication, and mail. The student sent out several emails to the former patient she lead the support group with and to her site mentor with updates on the support group. When printing off flyers for the support group, the DCE student had to communicate with the marketing individual at the facility. As the student prepared to mail the flyers out to former patients from the facility, she collaborated with many of the therapists as they wrote personalized letters to send to these patients along with the flyers. The DCE student had to ensure she was respecting patient confidentiality throughout this process by continuously communicating with her site mentor. When delivering flyers to several locations within the public, the student had to give them a brief and clear message about what the support group was trying to achieve. It was important that the DCE student educated them on the purpose of the support group so they could appropriately pass the message along to individuals within their company. In addition, the DCE student communicated with the maintenance staff at the facility regarding the time and date of the support group so they could ensure appropriate technology was setup when the student needed it. When communicating with the members of the support group and their caregivers, the DCE student had to respond to phone calls and emails regarding questions about the location and time of the support group. The student also had to ensure she was confident and prepared to present the materials she had created for the support group. The DCE student scheduled several Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 20 meetings to go over materials with the former patient she lead the group with. The leaders met to plan out topics and communicate about facilitation of the support group. Even though the DCE student had each group member fill out the outcome measure upon completion of the group, she had a verbal discussion with them upon completion of the support group about their thoughts and made it clear to them that she was open to any constructive feedback they had to give. Throughout this process, the DCE students communication skills and professionalism have definitely been enhanced as she has had to take initiative to collaborate with various individuals to ensure this support group was best meeting the clients needs. Leadership and Advocacy Throughout this experience, the DCE student has learned how to take initiative and advocate for a population that may be experiencing occupational deprivation. She had to advocate for the need of the support group to various individuals at the rehabilitation hospital to ensure they were on board for holding the group at this facility. When traveling to several locations to deliver flyers, the DCE student had to communicate the purpose of the support group and how it would improve occupational performance among individuals with a SCI. Along with advocacy, the student has had to take initiative to communicate with various individuals about updates regarding the support group. She also had to talk to several staff members at the facility she is at to ask them for assistance with certain aspects of the support group. This required leadership skills and effective communication to ensure that this group would benefit all individuals who attended. Conclusion Providing peer support to individuals after a SCI can greatly enhance their quality of life and occupational performance. Because a majority of the members from the support group felt Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 21 they received good education and would suggest this group to a peer, it is important for occupational therapists to seek out and recommend peer support groups to individuals with a SCI. This support group gave education to improve occupational performance from day to day, while also enhancing their social participation and social support through group discussion. Throughout this experience, the DCE student greatly enhanced her knowledge, leadership, and interdisciplinary skills, all of which are crucial to have within the first year of practicing as an OT. Because of this experience, the DCE student now has provided education and support to a vulnerable population, while also learning from these individuals to improve her future clinical skills among individuals with a SCI. Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 22 References Barclay, L., McDonald, R., Lentin, P., & Bourke-Taylor, H. (2015). Facilitators and barriers to social and community participation following spinal cord injury. Australian Occupational Therapy Journal. doi:10.1111/1440-1630.12241 Barclay, L., McDonald, R., & Lentin, P. (2015). Social and community participation following spinal cord injury: A critical review. International Journal of Rehabilitation Research, 38, 1-19. doi:10.1097/MRR.0000000000000085 Christiansen, C., Baum, C. & Bass, J. (2011). The person-environment-occupational-performance (PEOP) model. In E. Duncan (Ed.), Foundations for practice in occupational therapy (5th ed., pp. 93-104). London, United Kingdom: Elsevier. Cole, M. B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK. Craig, A., Perry, K. N., Guest, R., Tran, Y., & Middleton, J. (2015). Adjustment following chronic spinal cord injury: Determining factors that contribute to social participation. British Journal of Health Psychology, 20, 807-823. doi:10.1111/bjhp.12143 Ekelman, B. A., Allison, D. L., Duvnjak, D., DiMarino, D. R., Jodzio, J., & Iannarelli, P. V. (2017). A wellness program for men with spinal cord injury: Participation and meaning. OTJR: Occupation, Participation and Health, 37(1), 30-39. doi:10.1177/1539449216672170 Fritz, H. A., Dillaway, H., & Lysack, C. (2015). Dont think paralysis takes away your womanhood: Sexual intimacy after spinal cord injury. American Journal of Occupational therapy, 69, 6902260030. doi:10.5014/ajot.2015.015040 Running Head: QUALITY OF LIFE AFTER SPINAL CORD INJURY Schumm 23 Hagen, E. M. (2015). Acute complications of spinal cord injuries. World Journal of Orthopedics, 6(1), 17-23. doi:10.5312/wjo.v6.i1.17 Monden, K. R., Trost, Z., Catalano, D., Garner, A. N., Symcox, J., Driver, S., Hamilton, R. G., & Warren, A. M. (2014). Resilience following spinal cord injury: A phenomenological view. Spinal Cord, 52, 197-201. doi:10.1038/sc.2013.159 Munce, S. E. P., Webster, F., Fehlings, M. G., Straus, S. E., Jang, E., & Jaglal, S. B. (2014). Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: A qualitative descriptive study. BMC Neurology, 14(48). Sezer, N., Akkus, S., & Ugurlu, F. G. (2015). Chronic complications of spinal cord injury. World Journal of Orthopedics, 6(1), 24-33. doi:10.5312/wjo.v6.i1.24  ...

... Increasing Social Participation in Adults with Disabilities Jerica R. Schomber 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: Alison Nichols, OTR, OTD Running Head: SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES Capstone Project Entitled Title: Increasing Social Participation in Adults with Disabilities 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 Jerica R. Schomber Occupational Therapy 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 2 SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 3 Abstract Adults with disabilities can experience limited engagement in social participation due to limitations and barriers. There is a need for increased social participation of individuals with disabilities within the community setting. The purpose of this study was to enhance the quality of life of individuals with intellectual and developmental disabilities by developing a program to increase social participation within a community setting. Clients and staff at two adult day centers completed the social participation program. The program consisted of new activities that promoted social participation for the five rooms within the facility: Art, Recreation, PreVocational, Music/Fitness, and Snoezelen, as well as educational materials for staff for implementation of future activities. The new activities were based on common barriers and facilitators of social participation as supported by literature. Social participation increased by 6180% for client engagement in each of the new activities implemented. Staff demonstrated increased knowledge of barriers and facilitators of social participation in adults with disabilities. This programming is appropriate for increasing social participation in adults with intellectual and developmental disabilities within the community setting and enhancing staff knowledge of implementation of activities at an adult day center. Understanding the barriers and facilitators clients experience and providing educational materials to caregivers and staff can result in an increase of client participation and enhanced quality of life. Keywords: social participation, adults, disability, barriers, facilitators SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 4 Background The Ecology of Human Performance (EHP) was designed to emphasize the relationships between person and environment, human behavior and performance, and performance and context (Dunn, Brown & McGuigan, 1994). EHP is a practice framework theorized by Winnie Dunn and her colleagues at the University of Kansas Medical Center (Cole & Tufano, 2008). It was intended to be used by not only occupational therapists, but a variety of other professions including educators and rehabilitation specialists (Cole & Tufano, 2008). Dunn and colleagues centered the framework around four constructs: person, tasks, contexts, and personal-contexttask transaction (Cole & Tufano, 2008). Person is the client`s cognitive level, individualized skills and abilities, and motivators (Cole & Tufano, 2008). Tasks are an endless set of behaviors necessary to accomplish a goal (Dunn, Brown & McGuigan, 1994, p.599). Context is generalized to represent a person`s temporal and environmental surroundings that can present as both facilitators or barriers for engaging in tasks including; the developmental level, chronological age, social environment and physical environment (Cole & Tufano, 2008). The last construct structuring EHP, personal-context-task transaction, is the overall performance of a person utilizing their skills and abilities to engage in a task within their specific temporal or environmental context (Cole & Tufano, 2008). Each individual has a unique set of skills, abilities, and motivators that relate to their interests and experiences. Cole and Tufano (2008) explain that skills can be gained by altered or added interests or even lost due to illness or disability. Individuals with a disability may have a decreased personal-context-task transaction or performance of required tasks within a social/physical environment due to limited skills, abilities, and barriers, compared to those with a healthy person-context relationship (Cole & Tufano, 2008). As barriers impact the performance SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 5 of tasks within the social and physical environments, it results in individuals with disabilities having a decrease in social participation (Hammel et al., 2015). The EHP`s personal-context-task transaction could provide a basis for structuring increased social participation in a life skills program at an adult day center for clients with disabilities. In order to create a healthy transaction for meeting the goals of increasing social participation, the program would have to consider each clients interests, skills, and functional ability to complete tasks and activities throughout the program. The social and physical environment of being at the day center is a factor that could alter the way a client would complete the tasks. To establish the ultimate goal of increasing participation at the day program, it is important to create the healthy transaction by considering how each client completes tasks within the social setting of the group at the day program, given their unique set of skills, interests, barriers and overall functional abilities. Social Participation in Individuals with Disabilities One out of every five individuals in the United States living within the community are affected by a disability including long term physical, mental, intellectual, or sensory impairments (Center for Disease Control and Prevention, 2018a). The CDC (2018a) explains that the barriers corresponding with disabilities may hinder an individual`s ability or motivation to engage in social participation with others. Due to a lack of social engagement within the community, individuals with developmental and intellectual disabilities are currently experiencing a higher level of social isolation within their social environments, primarily containing family and professionals (Simplican, Leader, Kosciulek & Leahy, 2015). A study including participants diagnosed with an intellectual disability concluded that the participants self-reported being less social and having fewer friendships than their peers (Zeedyk, Cohen, Eisenhower & Blacher, SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 6 2016). Zeedyk et al. (2016) also stated that more than 10% of the participants felt a sense of loneliness and social dissatisfaction. In addition to participation restrictions of social environments, individuals with disabilities may also encounter barriers within their physical, sociocultural, political, and economic environments limiting the performance of tasks within each environment (Hammel et al., 2015). Barriers and Facilitators of Social Participation Context or environment has a significant influence on the many roles and tasks individuals participate in throughout their daily lives (Hammel et at., 2015). Hammel et al. (2015) and Abbott & McConkey (2006) identified not only common barriers, but common facilitators impacting individuals with disabilities in relation to participating within their communities. In 2015, a study presented eight contributing factors that have created both barriers and facilitators for individuals with disabilities engaging in social participation: built, natural, transportation, assistive technology, information and technology access, social support and societal attitudes, systems and policies, and economic environment (Hammel et al., 2015). Built. Built is defined as the human-made environment consisting of structures such as buildings, walkways, roadways, stations, and the environmental features (accessibility, noise, lighting, safety, etc.) that correspond (Hammel et al., 2015). In a 2006 study, participants concluded that a barrier limiting their participation within the community was the accessibility of workplaces and cross walks (Abbott & McConkey, 2006). Steps and curbs are common barriers causing individuals with a disability limited access to building and sidewalks (CDC, 2018a). Participants within a 2015 study, described built structures, such as ramps, wheelchair accessible bathrooms, and signs for visual/hearing impairment, as facilitating factors that increased ability to engage in social participation (Hammet et al., 2015). SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 7 Natural. Natural environment is the climate, weather conditions, geographical and topical features (Hammel et al., 2015). Barriers of the natural environment include ramps not being safe during snow or rain, as well as not being able to maneuver wheelchairs/assistive devices through sand or gravel (Hammel et al., 2015). However, facilitators of the natural environment could be the geographical features, such as living in an urban area where places are more accessible to get to without needing transportation. Transportation. Hammel et al. (2015) described transportation as the means of getting from one place to another by either private or public modes. Not all means of transportation are wheelchair accessible, or there is limited availability of buses and taxis that are wheelchair friendly (Abbott & McConkey, 2006). On the other hand, having access to services that provide wheelchair accessible vehicles, planes, and public transportation could facilitate individuals accessing the community when they are unable to drive or unable to get from place to place alone. Assistive Technology. Assistive technology is both the availability and use of products specialized to participate in daily tasks (Hammel et al., 2015). A participant within the Hammel et al. (2015) study explained that there is stress and fear while traveling due to assistive technology not always being readily available or easily accessible. However, assistive technology was a facilitator for that same participant when it comes to completion of tasks within the home or work environment, such as utilizing a voice recognition program for printing words on a screen based on spoken words (Hammel et al., 2015). Another participant reported that assistive technology allows increased independence within the home and work by assisting in tasks such as cooking or completing work tasks with voice recognition devices (Hammel et al., 2015). SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 8 Information and Technology (IT) Access. IT access is the knowledge and method for delivering and receiving information (Hammel et al., 2015). Without having available information, individuals lack the knowledge of events within the community or resources that could potentially be available to them (Abbott & McConkey, 2006). If information and technology are accessible, it tends to be primarily explained as facilitators of social participation by providing individuals with education and research on available resources (Hammel et al., 2015). Social Support & Societal Attitudes. Social support is defined as the availability of informational, instrumental and emotional support, whereas societal attitudes are the factors related to group or attitudes about disability and participation (Hammel et al., 2015, p.581). Barriers to social support and societal attitudes stem from lack of knowledge or awareness about disability creating stereotypes, stigma and discrimination (CDC, 2018a). With the lack of social support, individuals have decreased number of close friendships and increased feeling of loneliness (Zeedyk et al., 2016). Social support is reported as a significant facilitator for individuals with disabilities by providing support groups, physical and psychological assistance, and activities to engage in within the community (Hammel et al., 2015). Systems, Services and Policies. Hammel et al. (2015) described systems, services and policies as the accessibility of systems to support participation (health care, housing, community participation, etc.). The CDC (2018a) explains that barriers of policies, services and systems happen because there is a lack of awareness and regulations for creating jobs and programs to be accessible for all individuals, with or without disabilities. Facilitators of policies and systems are incorporated with the Americans with Disabilities Act, allowing individuals to have more opportunities within their communities (Hammel et al., 2015). SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 9 Economic. Economic environment is the means of resources required to participate and live within the community (Hammel et al., 2015). Individuals with a lower socioeconomic status tended to have decreased social participation within the community (Goll, Charlesworth, Scior, & Stott, 2015). The economic environment has a critical influence on individuals with disabilities, decreasing chances of employment compared to individuals without disabilities (CDC, 2018a). For many individuals, the money obtained each month is only enough to pay the bills, which limits the resources and services available (Hammel et al., 2015). On the other hand, a facilitator of the economic environment could be the ability to afford services and resources, such as activities within the communities, assistive devices or technology, and other factors that would increase social participation. Social Participation within Program Interventions Dunn, Gilbert, and Parker (1997) explain that when planning program strategies, it is not important to focus on the diagnosis of the individuals within the group, but to instead establish the barriers and facilitators, skills and abilities, and needs for implementation of appropriate intervention/activities that increase participation and the overall personal-context-task transaction. If an individual`s needs are unknown, it is not possible to meet the needs throughout the program or intervention (Dunn, Gilbert, & Parker, 1997). Individuals personal interest (art, music, fitness, etc.) along with availability and accessibility of specific leisure activities is a significant factor in how much an individual will participate (Ullenhag, Krumlinde-Sundholm, Granlund, & Almqvist, 2014). Art, music, and physical activity were all areas of interest for many clients that were shown to improve social participation. A study with individuals with sensory impairments focused on decreasing social isolation utilizing a 12-week art program (Vogelpoel & Jarrold SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 10 2014). Throughout the 12-week program participants engaged in mainly group-related art projects with the addition of adaptations such as Braille, audio descriptions, and sign language as needed (Vogelpoel, & Jarrold, 2014). Vogelpoel & Jarrold (2014) described that during the process of creating group artwork, individuals increased their self-confidence and found common interests with peers. The study concluded that following the completion of the 12-week program participants gained a significant increase of self-confidence and decreased social isolation (Vogelpoel & Jarrold, 2014). Eren (2015) implemented a study utilizing music to increase social interaction among a group of individuals with an intellectual disability. Participants of this study engaged in activities of singing, musical games, dance, and movement activities twice a month, with either a partner or in groups (Eren, 2015). Each session began with a warm up activity, brief massage to wake up the body, and a greeting song including each members name (Eren, 2015). Following the warm up, the leader implemented rhythm games and dance activities. As a result of this program, participants began to express trust, openness, and involvement within the group interventions (Eren, 2015). Eren (2015) concluded that music interventions have a significant increase on social participation and social interaction for individuals with intellectual disabilities. Physical activity was the focus of a study that addressed both the barriers and facilitators of physical activity in individuals with disabilities (Van Schijndel-Speet, Evenhuis, Van Wijck, Van Empelen, & Echteld, 2014). Throughout this study the participants engaged in activities including walking, dancing, gymnastics, cycling, gardening, and swimming (Van SchijndelSpeet et al., 2014). The study completed interviews and focus groups with participants to determine preferred activities, facilitators, and barriers (Van Schijndel-Speet et al., 2014). Van Schijndel-Speet et al. (2014) found that preferred activities were walking, cycling, dancing, and SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 11 gardening. The most common barrier was the dislike of an activity, followed by physical limitations, and fear of falling (Van Schijndel-Speet et al., 2014). Common facilitators were found to be enjoyment of activities, social support, and activities including others (Van Schijndel-Speet et al., 2014). Authors of this study concluded that feelings of enjoyment, confidence, and being comfortable during the activity significantly contributed to the participation in physical activity (Van Schijndel-Speet et al., 2014). Conclusion Individuals with disabilities, including clients at the adult day center, may experience a decrease in social participation due to barriers limiting their ability to engage in certain occupations or activities. Through identifying barriers and facilitators of the individuals and the surrounding environments, staff can design and implement activities to meet the skills and abilities of all clients within the group. If the program is designed around the interests, skills, and the abilities of the clients, it could lead to increased engagement in the tasks and a healthy overall personal-context-tasks transaction for all clients. Screening and Evaluation An adult day center for clients with intellectual and development disabilities in Batesville and Sunman, Indiana were the placements around which this Doctoral Capstone Experience project focused. The non-profit organization provides Life Skills programs for adults over the age of 18. The goal of the Life Skills program is to provide social interaction, purposeful activities, community experiences, and exploration of interests and leisure skills for quality in life (New Horizons Rehabilitation, 2017). The Life Skills program serves approximately 30 clients at the Batesville facility and approximately 50 clients at the Sunman facility. Each facility has team leaders and group leaders supervising the clients and the programs. The Life Skills SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 12 program addresses five areas: art, music/fitness, pre-vocational skills, recreational activities, and sensory(Snoezelen). The five areas were divided into different rooms throughout the facilities in which groups of clients and their designated group leader rotate through each day. A list of activities being implemented within each area prior to the DCE project are displayed in Appendix A. A thorough needs assessment was completed in the facilities to analyze the current programming compared to what was still needed in order to enhance the program (McCawley, 2009). To initiate the needs assessment, a semi-structured interview was completed with the Program Director and Program Manager to determine what gaps were present in the current programs being implemented. Brief interviews were completed with each of the group leaders, team leaders, and clients at both sites to gain further knowledge of what was going well and what was lacking in current program. The information gained throughout the interviews created an area of focus for the Doctoral Capstone Experience project that would best benefit the Life Skills programs in both the facilities. It was concluded that the area that would most benefit the Life Skills programs would be a project creating new activities to increase social participation and quality of life, as well as educating staff on barriers and motivators to implement program activities. The focus stemmed from an average of only 20-30% of clients engaging in group activities due to lack of interest in the activity or inability to participate due to deficits. Clients reported getting bored doing the same activities every day. Research supports that when activities were designed around the interests of the clients they were more willing to participate (Ullenhag, Krumlinde-Sundholm, Granlund, & Almqvist, 2014). On the other hand, many staff state they were stuck in a rut, running out of activities to lead the groups. With those areas being gaps in the Life Skills SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 13 program, the project was aimed to increase the engagement of the clients in program activities and overall quality of life for the clients at both the Batesville and Sunman facilities. As a result of the needs assessment, a Goal Attainment Scale (GAS) was created to establish three measurable goals with an expected level of outcome by the end of the Doctoral Capstone Experience (Ottenbacher & Cusick, 1990). The three goals included: creating new activities, increasing the percentage of client social participation, and providing staff with educational materials. These goals are laid out with their expected levels of outcomes in Appendix B. New activities were designed based on research and the interests of the clients including, but not limited to: sports, music, drawing, card games, etc. Along with knowing the interests of the clients, understanding the barriers and facilitators of social participation also influenced the willingness of the clients to engage in activities (Abbott & McConkey, 2006). By providing staff with educational materials on clients barriers and facilitators of social participation, this allowed the staff to obtain strategies for developing new activities to increase group participation. To measure the results of the program, each of the three goals on the Goal Attainment Scale were evaluated and scored based on the level of outcomes that were achieved. An exit survey was also created to assess implementation of new group activities, the percentage of clients participating within the activities, and the materials provided to the staff to increase participation rates. The surveys were completed at the end of the implementation phase in order for the staff to evaluate the overall satisfaction of the Doctoral Capstone Experience. The survey is displayed in Appendix C. SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 14 Compare and Contrast Community Vs Traditional Practice Areas Occupational therapy within an emerging community setting like the Life Skills program at NHR can have both similarities and differences compared to a more traditional setting, such as a skilled nursing facility, outpatient or inpatient setting. The screening and evaluation process in traditional and emerging practice setting both take areas of socioeconomic status, age, level of functioning, health status, and health service utilization, into consideration when planning for implementation (Schmitt et al., 2010). However, during the screening and evaluation phase occupational therapists in an emerging community setting, would be evaluating a group of clients. To make activities and sessions client-centered with a group of clients, the occupational therapist identifies a common interest of the clients. On the other hand, in a more traditional setting like a skilled nursing facility or an outpatient facility, occupational therapists make treatment sessions client-centered by focusing solely on the interest and needs of the specific client rather than a group of clients. An occupational therapist in a traditional setting could use similar aspects of the social participation program during implementation to increase engagement in the session. Within the emerging community setting, the aspects focused on increasing social participation with the group of clients. In areas such as a skilled nursing facility or outpatient setting the focus would be more to increase participation in treatment or activities outside of therapy. For example, an occupational therapist would still utilize a client`s barriers and facilitators to increase their participation in the treatment session. Like the implementation of the clients in the community NHR setting, barriers and facilitators were used to increase the overall participation in the group activities. SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 15 Challenges could arise from using this specific program in a traditional setting with only one client. The program used at NHR focuses on the general interests, barriers, and facilitators, of the group, which might not work for one client due to having a different set of factors that influence participation. If the facilitators and interests do not address the needs of the individual client they may have limited participation within the activity (Tak, Kedia, Tongumpun, & Hong, 2015). Implementation of all activities within the social participation program would not be feasible for traditional settings with individual clients, due to a majority of the activities being based on a group of six-eight clients versus one client. Though the process of a participation program in traditional and emerging practice setting have variations, the programs would have a similar outcome of enhancing social participations to have an increased quality of life. Implementation The Life Skills social participation program was designed to implement and present new activities corresponding with the five rooms: Music & Fitness, Recreation, Pre-Vocational, Art, and Snoezelen. Implementation of the program led by the occupational therapy student began week 8 of the Doctoral Capstone Experience. At the time of implementation for each room, a section of the binder was presented to the staff with ten new activities for each room, which is included in Appendix A. All of the activities provided included a list of materials, instructions, and potential modifications to utilize as necessary based on the clients abilities. The first implementation was focused on Music & Fitness. The groups completing the implementation at each facility consisted of 6-8 clients, a group leader, and the occupational therapy student. Clients were arranged in a circle either standing or seated in a chair/wheelchair based on functional ability and safety precautions. The goal of the activity was to use teamwork and communication to not let a balloon touch the ground. Once the balloon was dropped, the goal SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 16 was to beat the time prior. Clients were hesitant of participation at the start of the activity due to limitations, but with motivation and modification of verbal cues and hand-over-hand assistance for catch and release of the balloon, all clients engaged within the activity. Implementation of Art was designed around making holiday crafts for St. Patrick`s Day. In the art room, the clients were seated at two of the tables for the completion of this activity. The clients were to listen to instructions and utilize a visual demonstration to then gather materials, paint, glue, and piece together materials. Clients were encouraged to share materials, allowing opportunity for social engagement while completing the activity. Clients were enthused to show one another the craft after completion to compare finished artwork. Modifications of enlarged paint brush handles, hand-over-hand assistance for painting, and verbal cues for proper alignment of pieces were provided throughout implementation of art activity. Recreation was implemented through a modified group basketball activity. During this activity, the clients were spread out throughout the recreation room with a basket in the middle of the room. Each of the clients were provided with a set of balls, which they aimed at the target until making each of their set of balls into the basket. Clients were again hesitant to initially engage in the activity due to limitations. Modifications were provided which allowed clients to move closer to the target as needed, or have occasional hand-over-hand assistance for grasp and release of ball. When given motivation and modifications, all clients engaged in the activity. Another activity that became popular within the recreation room after modifications for increased client engagement was the card game UNO. The clients enjoyed card games, but prior to modifications, engagement was difficult. Modifications of card holders, verbal cues, minimal assistance with fine motor skills, and grasp and release increased the engagement of clients in group card games within the recreation room. SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 17 Pre-Vocational tasks were implemented through an activity completed by sorting items into various categories. The clients were seated at a table in the pre-vocational room and given a board with a specific category: clothing, toys, food, etc. The clients then had to sort through cards with pictured and written items on it to identify which category it belonged in. Clients were given verbal cues throughout activity when needed. A modification of minimal assistance for fine motor coordination of picking up cards was provided as determined necessary. During the time of this activity, a client demonstrated challenging behaviors, which caused them to refuse to participate in the activity, even after encouragement from staff and the occupational therapy student. The behavior was distracting to the other group members, causing a delay in the activity. The group leaders were trained on behaviors of the clients and was able to calm the client in a timely manner, while the OT student continued the activity with the rest of the group. Snoezelen activities were not implemented due to that room not being used on a daily basis. The Snoezelen rooms were only used during a time where there are an abundance of clients and the groups needed an additional space. Staff had however been presented the materials, instructions, and modifications of the ten new activities to be implemented when in Snoezelen. Following the completion of activity implementation, the survey questions shown in Appendix C were distributed to the group leaders at both Batesville and Sunman facilities. The survey questions addressed skills needed for implementation, performance of implementation, and likeliness of carryover of activities and strategies. Leadership Skills Effective implementation in the community setting of adult day centers required the need for adequate leadership skills. One of the most important leadership skills that was necessary was SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 18 to be personable, with the ability to build rapport with both the clients and staff. In order for clients to engage in any activities within the groups, they needed a good rapport and trust in the individual leading the group. Once the rapport was built, then it was important to gain confidence while implementing the activities. Demonstration of confidence by the occupational therapy student during activities showed the clients that they too can be confident while engaging in activities instead of being hesitant due to limitations and low self-esteem. Along with the leader demonstrating confidence, it was important to have the skills to motivate clients. The clients were accustomed to being sedentary during their day program, prior to the implementation of new activities in this programs. Some of the clients were still in the mindset that they didnt have to do anything all day. Though it was their right to refuse and not have to participate, it was highly encouraged to engage in social participation while present at the day program. At times, many of the clients needed motivation to join the group activities. In addition to motivating clients, it was essential as the leader to understand each of the clients` personal motivators. On the occasion of a client demonstrating challenging behaviors and refusing to participate, the leader was able to get the majority of clients to engage in the group activities. To provide effective implementation, leadership skills toward staff were significant as well. Similar to leadership with the clients, it was essential to have confidence. The staff were more receptive to the program, knowing that the occupational therapy student was confident with the knowledge and implementation of the activities. It was important as a leader to have good communication skills. In order for carryover of the program after discontinuation of DCE, the leader had to communicate to the staff the process of the program, in additional to the strategies and modification made throughout implementation. Adequate communication skills, provided SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 19 the staff with a comfortable environment to ask questions or concerns to better understand the process. The promotion of staff development was also influenced by the leadership skills during implementation of group activities. Staff development was promoted during each implementation session. The staff were provided with educational materials throughout implementation sessions, regarding facilitators and barriers of client engagement. At times, staff did not fully understand the barriers impacting clients abilities to engage in activities along with the rest of the group, or were uncertain on modifications that could enhance the participation of all clients. Not understanding the barriers and limitations could then often cause clients to engage in challenging behaviors, impacting their participation in activities for the rest of the day. Staff were educated on modifications and strategies throughout the daily activities to maintain an increase in participation for clients. The goal for staff development during this program was for staff to be provided with materials to continue adapting and modifying activities to the limitations and deficits of each of the clients after the discontinuation of the Doctoral Capstone Experience project for ongoing increased social participation. Discontinuation Discontinuation of the Life Skills social participation program was an ongoing process throughout the Doctoral Capstone Experience. The discontinuation process was designed for both clients and staff. The primary resource utilized for discontinuation was the binder created of ten new activities for each of the Life Skills rooms. Each of the activities in the binder were sorted into sections based on the room and given a list of materials, instructions, modifications, and benefits. The binder also included a section for education. This section included resources of barriers and facilitators of social participation for adults with developmental and intellectual SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 20 disabilities. The discontinuation process for all clientele was focused primarily on education of factors influencing social participation and the presentation of new activities from the binder for all rooms of the Life Skills program. Client education was centered around the modifications and adaptations that increased social engagement during group activities. Clients were educated on how to modify and adapt activities to be both easier and more challenging. Clients with a higher functional ability believed that some activities were childish or too easy due to them being created for the average functional level of all clients. An example of a modification that made the activity more challenging was with a money management task in the pre-vocational room. The particular activity was designed for clients to add coins and bills to make the exact price of the item given on the chosen card. Each card had a picture of the item, price for the item, and visual cues for which coins/bills were needed. A client mentioned that activity was too easy. A modification suggested was to take multiple cards, add the prices together, and determine the price needed for the total amount of the cards. This same activity could also be graded down by matching the pictured coins and bills given on the card. Each activity presented in the binders were given modifications to utilize as needed. Clients demonstrated carryover of these suggested modifications throughout various activities implemented in the program. For example, clients began to utilize the visual cues on activities for matching the corresponding items instead of asking for assistance from the staff to sort the items or reading the labels. The modifications were provided for both clients and staff as a reminder of how to modify the given activities for increasing the overall client participation for group activities when implemented in the future. The modifications within the binders were also intended for the staff of the Life Skills program to utilize during implementation of future activities. The modifications will continue to SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 21 provide the staff with strategies that will increase the participation while they lead the group activities upon discontinuation of the Doctoral Capstone Experience. In addition to the modifications provided in the binders, staff were provided with additional recommendations. The occupational therapy student provided recommendations to the staff of examples including: adapting art activities with increased circumference grips on art utensils, cues for grasp and release of objects during board games, hand-over-hand modification for catch and throw of balloons/balls, and more. To ensure carryover, staff demonstrated and verbalized understanding of the strategies during their implementation of activities. Another factor mentioned previously was the educational section of the binder. The educational section was created to inform staff of common barriers and facilitators of social participation in regards to the clients. As staff received increased knowledge on the barriers and facilitators that influence participation, the activities implemented by staff will be designed to meet these factors leading to a continued increase in participation. The educational factors to both staff and clients provided by the occupational therapy student will give the facility an adequate basis for continuation of this program following the completion of the Doctoral Capstone Experience. Outcomes The primary outcome of the Life Skills program was to increase social participation of clients with developmental and intellectual disabilities at NHR. Increased staff education for implementation of activities was the secondary outcome for the Doctoral Capstone Experience project. These two outcomes were analyzed through setting goals on a Goal Attainment Scale (GAS). The GAS included three goals that were developed during the initial screening and evaluation phase of the Doctoral Capstone experience. The most likely outcome of the three SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 22 goals was: creating ten new activities for each room, increasing the percentage of client social participation to 41-60% of group, and providing staff with educational materials. The outcome of the three goals have each been met during the process of the Doctoral Capstone Experience. Goal 1 received a 0 on the GAS scale, meaning that the most likely outcome was met with ten new activities for each room had been developed and presented. Goal 2 received a +1, with 61-80% of clients within the group engaging in the new activities implemented. Lastly, Goal 3 received a +2, concluding that educational materials were provided to the staff on barriers and facilitators of social participation, as well as 10 new strategies for increasing participation in current and new activities. All of the goals together created an overall increase in social participation for the clients at NHR in group activities. Four of the group leaders completed the survey. The outcome of the survey was that all four staff answered each of questions 1-10 with a 5, meaning they strongly agreed with the corresponding statement. This indicates that the OT student demonstrated effective communication and leadership skills during implementation, the binder was perceived as helpful and beneficial for clients and staff, and staff plan to utilize skills and strategies for carryover for future implementation of activities. Societal Needs The societal need addressed throughout the Doctoral Capstone Experience project and the Life Skills social participation program was the need for individuals with disabilities to increase engagement in social participation within the community. Research suggested that individuals with disabilities have decreased engagement of social participation within the community (Simplican, Leader, Kosciulek & Leahy, 2015). Due to 61-80% of clients engaged in social participation with in the Life Skills program new activities, this need has been addressed at SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 23 NHR. Another societal need that corresponded with the social participation was the understanding of barriers that impact the ability to engage in activities within the community for individuals with disabilities. As barriers impact the performance of tasks within the social and physical environments, it results in individuals with disabilities having a decrease in social participation (Hammel et al., 2015). This societal need was addressed in Goal 3, with educational information being provided to staff through identifying the barriers and facilitators of social participation. Overall Learning Communication with clients, staff, family, and other professional at NHR was a key factor throughout the whole Doctoral Capstone Experience. On the first day of the Doctoral Capstone Experience, the Program Director requested an introductory letter to communicate the purpose and plan of the Life Skills program, along with the role of the occupational therapy student, to the clients, staff, guardians, caregivers, families, and other individuals within the NHR community. The introductory letter provided a written form of communication that initiated interaction and informed the NHR community of the role of the clients and staff in the program, as well as the goals and outcomes that were intended to be accomplished over the 14week program. The initial form of communication to the NHR community was followed by oral communication and interaction with staff and clients in the Life Skills programs. Communication continued during the screening and evaluation process with semi-structured interviews with clients and staff about the existing program and thoughts for the Life Skills social participation program. Communication and interaction with the Program Director, the group leaders, team leaders, and clients proceeded through implementation of activities and discontinuation of the SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 24 program. The implementation and discontinuation phases included not only oral communication, but written communication through instructions and modifications, and nonverbal communication with demonstrations. All types of communication were essential for effective interaction with the staff and clients throughout the whole process of the Doctoral Capstone Experience. Each client had a different form of communication that best suited them. For example, one client communicated with their own form of sign language; in order to communicate with this client, it was necessary to understand their form of sign language. Many of the clients at NHR are nonverbal, which also required a different form of communication that had to be acquired. Communication and interactions with staff was also different from the clients. For example, with the Program Director, interaction occurred intermittently through written and oral communication about the process and update of the program. Interaction with team leaders and group leaders occurred daily through oral communication about implementation of activities and education. Throughout the program and Doctoral Capstone Experience, it was important to understand and utilize a variety of communication styles with clients and staff. After the occupational therapy student obtained the ability to communicate with each individual utilizing their suitable style, it created a foundation for the most effective outcome of the program and continuation of the program upon completion of the Doctoral Capstone Experience. Leadership Skills Communication was a core component of leadership skills, along with confidence, and building a rapport. These skills were crucial for the role of an occupational therapist. As an occupational therapist, these skills were important with each client, as well as their families and caregivers. Similar to the clients and staff at NHR, it was important to initially build a rapport SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 25 with clients. During the Doctoral Capstone Experience, rapport was built through being personable with the staff and clients through communicating on their levels and engaging in activities that were of interest to them. Once having that rapport with clients, as well as future clients in practice, it leads to trust in the practitioner and compliance with treatments. As the occupational therapist student became more confident over time in the implementation of the activities in the Life Skills social participation program, the clients at NHR also continued to become more confident in their ability to engage in the tasks without having barriers of limitations and low self-esteem holding them back. This will be similar in future practice as an occupational therapist. As clients see the confidence in their practitioner, they too will gain more confidence in themselves inside and outside of therapy with their skills and abilities. Lastly, communication with any client or staff is an important role. Communication with staff and clients at NHR grew throughout the process of the Doctoral Capstone Experience, after understanding the various communication styles and adapting the style for each individual. These styles varied from learning clients individualized use sign language, to understanding the tone of voice which increases client productivity, utilizing nonverbal communication styles, and communicating on a more professional level with staff. An occupational therapist has to be able to communicate with coworkers within their field and interdisciplinary teams, as well as each one of their clients. Each of these individuals may require a different style of communication like the clients and staff at NHR. Therefore, understanding and utilizing the various styles of communication during the Doctoral Capstone Experience will be beneficial for the future role as a practitioner. Effective communication skills in practice are essential for the best quality of care to the clients. Advocacy Skills SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 26 Leadership skills were not the only skills that improved during the Doctoral Capstone Experience. Advocacy skills were also influenced during the Doctoral Capstone Experience. Regardless of the setting or population, an occupational therapists goal is to advocate for their clients. The population served in the Doctoral Capstone Experience was individuals with developmental and intellectual disabilities. The role of the occupational therapy student serving this population was to advocate for the individuals and their abilities to engage in social participation within their community. Many barriers limited clients abilities to engage in tasks or activities. Advocacy was shown by developing modifications for individuals to engage in the activities within their functional limits. Advocacy was also shown by educating staff on barriers and facilitators of social participation, to provide them with the knowledge and understanding for them to develop increased social participation for all clients. Lastly, as an occupational therapy student, it was my obligation to advocate for the profession of occupational therapy. New Horizons Rehabilitation does not have an occupational therapist on staff, making it a priority to advocate the need and role of occupational therapy in a non-traditional community based setting. The advocacy skills developed during the time of the Doctoral Capstone Experience will carry over to the role as an occupational therapist, advocating for clients and their abilities. SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 27 References Abbott, S., & McConkey, R. (2006). The barriers to social inclusion as perceived by people with intellectual disabilities. Journal of Intellectual Disabilities, 10(3), 275-287. Centers for Disease Control and Prevention (2018a) Common Barriers to Participation Experienced by People with Disabilities Retrieved from https://www.cdc.gov/ncbddd/disabilityandhealth/disability-barriers.html Centers for Disease Control and Prevention (2018b) What is Disability Inclusion? Retrieved from https://www.cdc.gov/ncbddd/disabilityandhealth/disability-inclusion.html Cole, M.B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK, Inc Dunn, W., Brown, C., & McGuigan, A. (1994). The Ecology of Human Performance: A framework for considering the effect of context. American Journal of Occupational Therapy, 48(7), 595-607. Dunn, W., Gilbert, M. P., & Parker, K. (1997). The Ecology of Human Performance Framework: A model for identifying and designing appropriate accommodations for adult learners. National Association for Adults with Special Learning Needs, 6, 25-40. Eren, B. (2015). The use of music interventions to improve social skills in adolescents with autism spectrum disorders in integrated group music therapy sessions. Procedia-Social and Behavioral Sciences, 197, 207-213. Goll, J. C., Charlesworth, G., Scior, K., & Stott, J. (2015). Barriers to social participation among lonely older adults: The influence of social fears and identity. PloS one, 10(2), e0116664. Hammel, J., Magasi, S., Heinemann, A., Gray, D. B., Stark, S., Kisala, P., ... & Hahn, E. A. (2015). Environmental barriers and supports to everyday participation: A qualitative insider SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 28 perspective from people with disabilities. Archives of Physical Medicine and Rehabilitation, 96(4), 578-588. McCawley, P. F. (2009). Methods for conducting an educational needs assessment. University of Idaho, 23. New Horizon`s Rehabilitation. (2017). Our Services Retrieved from https://nhrinc.org/life-skillsprograms/ Ottenbacher, K. J., & Cusick, A. (1990). Goal attainment scaling as a method of clinical service evaluation. American Journal of Occupational Therapy, 44(6), 519-525. Simplican, S. C., Leader, G., Kosciulek, J., & Leahy, M. (2015). Defining social inclusion of people with intellectual and developmental disabilities: An ecological model of social networks and community participation. Research in Developmental Disabilities, 38, 1829. Schmitt, E. M., Sands, L. P., Weiss, S., Dowling, G., & Covinsky, K. (2010). Adult day health center participation and health-related quality of life. The Gerontologist, 50(4), 531-540. Tak, S. H., Kedia, S., Tongumpun, T. M., & Hong, S. H. (2015). Activity engagement: Perspectives from nursing home residents with dementia. Educational Gerontology, 41(3), 182-192. Ullenhag, A., Krumlinde-Sundholm, L., Granlund, M., & Almqvist, L. (2014). Differences in patterns of participation in leisure activities in Swedish children with and without disabilities. Disability and Rehabilitation, 36(6), 464-471. Van Schijndel-Speet, M., Evenhuis, H. M., Van Wijck, R., Van Empelen, P., & Echteld, M. A. (2014). Facilitators and barriers to physical activity as perceived by older adults with intellectual disability. Mental Retardation, 52(3), 175-186. SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 29 Vogelpoel, N., & Jarrold, K. (2014). Social prescription and the role of participatory arts programmes for older people with sensory impairments. Journal of Integrated Care, 22(2), 39-50. Zeedyk, S. M., Cohen, S. R., Eisenhower, A., & Blacher, J. (2016). Perceived social competence and loneliness among young children with ASD: Child, parent and teacher reports. Journal of Autism and Developmental Disorders, 46(2), 436-449. SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 30 Appendix A Current Activities Rooms Rec Room Snoezelen Room (Sensory) Art Room PreVoc Room Current Activities Computer Time Socialization Board Games Reading Puzzles Coloring Cards Occasional Movies New Activities Inflatable Bowling Modified Frisbee Golf Group Modified Basketball Balloon Volleyball Peg Board Patterns Life Size Hungry Hippos Outdoor Yahtzee Group Scavenger Hunt Shape sorters Building blocks Bean Bags Sensory Board Sensory bags Sensory Color Sorting Mats Water Bead Bins Scents Tactile Discs Sensory Lights Busy Boards Lotions/Smells Stretches Sensory Bins Weighted Blankets Mindfulness/Meditation Rice Bin Sensory Ball Bin Styles of Art Cleaning Supplies Collaborative artwork Art Projects Putting Supplies Away Bird feeders Sewing Art from recycled Musical Instruments Paper mache Suncatchers Sensory bottles/bags Clay Stenciling Tye Dye handkerchiefs Painting Stamp Art Salt Painting Tye dye Rock Art Fidget balls Gardening Planters Homemade Playdoh Laundry Hardware assembly Cooking NHR Cook book Cleaning Money Sorting Hair/Nails Which category am I Counting Pop Tabs Medication Management Laundry Matching and Sorting Matching Color Pieces Pricing Items What Ingredients Do I Need? Sorting Utensils SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 31 Music/ Fitness Room Exercise Videos Instruments Exercise Equipment Piano Bike Keyboards Exercise Balls Radio Weights Shakers Consumer Lead Exercises Sing along Parachute Scarves Walk Rhythm games Scarf Movement Games Group Balloon Toss Musical Beach ball Stretches Chair Bingo Dance Party Obstacle Courses Bean bag toss Chair Exercises SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 32 Appendix B Goal Attainment Scale. Level of Expected Outcome +2 Much more than expected Goal 1: Activities A binder of 15 new activities for each room (rec, art, music/fitness, Snoezelen, and prevocational) specific to each of the Batesville and Sunman facilities +1 More than expected A binder of 10 new activities for each room (rec, art, music/fitness, Snoezelen, and prevocational) specific to each of the Batesville and Sunman facilities 0 Most likely outcome A binder of 10 new activities for each room (rec, art, music/fitness, Snoezelen, and prevocational) for both Batesville and Sunman facilities -1 Less than expected A binder of 5 new activities for each room (rec, art, music/fitness, Snoezelen, and prevocational) for both Batesville and Sunman facilities -2 Much less than expected A binder of 2 new activities for each room (rec, art, music/fitness, Snoezelen, and prevocational) for both Batesville and Sunman facilities Level of Expected Outcome +2 Much more than expected +1 More than expected 0 Most likely outcome -1 Less than expected -2 Much less than expected Goal 2: Participation 81-100% of clients participating in new activity 61-80% of clients participating in new activity 41-60% of clients participating in new activity 21-40% of clients participating in new activity 0-20% of clients participating in new activity Level of Expected Outcome +2 Much more than expected Goal 3 -Provide staff with educational materials including common barriers and facilitators of social participation in individuals with disabilities -Provide 10 strategies for increasing social participation during current activities and creating new activities. -Provide staff with educational materials including common barriers and facilitators of social participation in individuals with disabilities +1 More than expected SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 33 0 Most likely outcome -1 Less than expected -2 Much less than expected -Provide 5 strategies for increasing social participation during current activities -Provide staff with educational materials including common barriers and facilitators of social participation in individuals with disabilities -Provide staff with educational materials including common facilitators of social participation in individuals with disabilities - Provide staff with educational materials including common barriers of social participation in individuals with disabilities SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 34 Appendix C Survey Question Please rate each question on a scale of 1-5. 1-Strongly Disagree 2-Disagree 3-Neutral 1. 4-Agree 5-Strongly Agree OT Student demonstrated ability to interact with clients and staff in a professional manner during Doctoral Capstone Experience (DCE). 1 2. 2 3 4 5 OT Student demonstrated ability to effectively communicate with clients and staff during activities throughout DCE. 1 3. 2 3 4 5 The Activities Binder provided New Horizons clients and staff with a new resource that can lead to increased levels of social participation in clients. 1 4. 2 3 4 5 The new activities provided for each of the five rooms (Art, Music& Fitness, Pre- Vocational, Recreation and Snoezlen) were appropriate and suitable for clients. SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 35 1 5. 2 3 4 5 Providing materials lists, instructions, modifications and benefits of the new activities could lead to more effective implementation of activities in the future. 1 6. 2 3 4 5 Educational materials in the Education section of the Activities Binder provided staff with increased knowledge on barriers and facilitators of social participation. 1 7. 2 3 4 5 Educational materials in the Education section of the Activities Binder provided staff with appropriate strategies to consider for increased participation in future activities. 1 8. 2 3 4 5 OT Student demonstrated effective implementation strategies that increased social participation of clients during the 14 week DCE. 1 2 3 4 5 SOCIAL PARTICIPATION AND ADULTS WITH DISABILITIES 36 9. The DCE project aligned well with the needs and wants communicated by the NHR staff in regards to social participation. 1 2 3 4 5 10. Materials, strategies and information provided by OT student during the 14 weeks will be continued to be utilized at NHR following completion of DCE. 1 2 3 4 Additional comments regarding OT student or DCE: 5  ...

... Running head: PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 1 Physical and Psychosocial Effects of a Fitness Program for Individuals with Disabilities: A Health Promotional Approach Clare E. Schirmer 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: Dr. Alison Nichols, OTR, OTD PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM A Capstone Project Entitled Physical and Psychosocial Effects of a Fitness Program for Individuals with Disabilities: A Health Promotional Approach 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 Clare E. Schirmer Doctor of Occupational Therapy 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 2 PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 3 Table of Contents Acknowledgements..5 Abstract6 Physical and Psychosocial Benefits of a Fitness Program for Individuals with Disabilities: A Health Promotional Approach......7 Literature Review.7 Benefits of Physical Activity.....7 Barriers to Participation....8 Facilitators for Participation9 Promotion of Health and Well-Being Through Occupation..10 Theoretical Basis10 Screening and Evaluation..12 Needs Assessment..12 Unstructured Interview..13 SWOT Analysis.14 Supported Literature..15 Community vs Traditional Clinical Settings..15 Implementation Phase16 Determining Programmatic Needs.16 Staff Development.18 Leadership..19 Program Format and Curriculum...19 Outcome and Discontinuation22 PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 4 Activity Action Trackers...22 Focus Group...26 Program Positives..26 Program Areas of Improvement.28 Ongoing Process for Quality Improvement...29 Addressing Societys Needs...30 Overall Learning30 Professional Communication.30 Colleagues..31 Client..31 Family32 Leadership and Advocacy..32 Implications to Occupational Therapy...34 References..36 PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 5 Acknowledgements I would like to express my appreciation for those who contributed to this Doctoral Capstone Experience and project. I would like to acknowledge my professor and faculty mentor, Dr. Julie Bednarski for her guidance in achieving the outcome objectives established for this Doctoral Capstone Experience. I would also like to thank Dr. Alison Nichols, my faculty capstone advisor, for her scholarly expertise and revisions to this paper. Lastly, I would like to recognize Tom Heines, the Executive Director of Empower Sports and my site mentor, for his continual support and sharing his knowledge gained from extensive experience in communitybased programming for individuals with disabilities. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 6 Abstract The level of physical activity participation among individuals with disabilities is substantially lower than individuals without disabilities, which is largely attributed to attitudinal, environmental, and programmatic barriers. There is a pressing societal need for tailored physical activity programs that promote healthy behaviors, habits, and routines for individuals with disabilities. The purpose of this Doctoral Capstone Experience project, in collaboration with Empower Sports, was to develop a fitness program for individuals with disabilities to increase physical activity and develop psychosocial skills. A physical fitness program was developed for 15 individuals with varying disabilities ranging from 13-33 years old at an adventure sports center. Data obtained from activity action tracker watches revealed a positive trend of the participant groups average steps, calories, and distance traveled per session over eight weeks. Additionally, overall positive feedback was received during a focus group from parents of the participants related to the impact of the program on their child, most notably in the areas of selfconfidence, social skills, and volition. These findings suggest that participation in nontraditional forms of physical activity for individuals with disabilities can have physical and psychosocial benefits that may contribute to improved occupational performance and enhanced quality of life. Keywords: physical activity, disabilities, fitness program, adventure sports center PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 7 Physical and Psychosocial Effects of an Eight-Week Structured Fitness Program for Individuals with Disabilities: A Health Promotional Approach According to the Developmental Disabilities Assistance and Bill of Rights Act of 2000, a developmental disability is defined as a severe, chronic, disability that is attributable to a physical or mental impairment that is likely to continue throughout the persons life and results in functional limitation in three or more areas of life activities (p.106-402). Approximately one in six children have a developmental disability or a developmental delay (Centers for Disease Control, 2015). Individuals with disabilities in select populations have a higher prevalence of being overweight, are more prone to live a sedentary lifestyle, and experience additional barriers that interfere with physical activity as compared to their peers without disabilities (Heath & Fentem, 1997; Rimmer, Rowland, & Yamaki, 2007; Shields, Synnot, & Barr, 2012). Individuals with disabilities have an increased susceptibility for developing chronic secondary health conditions including fatigue, pain, deconditioning, social isolation, obesity, depression, difficulty performing activities of daily living (ADL), and other adverse health conditions (Rimmer, Rowland, & Yamaki, 2007). These aforementioned factors can significantly interfere with functional independence and autonomy and limit opportunities in desired occupations, thus negatively impacting quality of life (Sardinha et al., 2015). Literature Review Benefits of Physical Activity Extensive research supports the physical and psychosocial benefits of physical activity for individuals with disabilities (Johnson, 2009). Documented physiological benefits include improvements in cardiovascular endurance, gross motor function, flexibility, balance, agility, muscular strength, bone density, and blood pressure (Burgeson, Wechsler, Brener, Young & PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 8 Spain, 2001; Johnson, 2009). Physical activity has also been found to have positive effects on psychosocial well-being by providing an opportunity to form new friendships, express creativity, develop a self-identity, and improve self-esteem (Dykens, Rosner, & Butterbaugh, 1998; Kliziene, Klizas, Cizauskas, & Saule, 2018). Six research studies investigated the effects of group fitness programs for individuals with disabilities for children and/or adolescents that incorporated progressive warm-up, strengthening, aerobic activity, structured gross motor games, and cool-down. The results demonstrated improvement in cardiovascular function, strength, gait speed, functional mobility, self-perception, and high levels of satisfaction of the participants (Johnson, 2009). Despite these well-researched benefits, approximately 56% of individuals with disabilities do not participate in regular physical activity largely influenced by attitudinal, environmental, and programmatic barriers that hinder their inclusion in physical activity, fitness, sports, and recreational programs (Lakowski & Long, 2011). To entirely understand the reasons individuals with disabilities often have lower levels of physical activity, it is important to determine the factors that obstruct as well as facilitate participation in physical activity for this population. Barriers to Participation A wide range of identified barriers that impede participation in physical activity for individuals with disabilities has emerged from the literature (Shields et al., 2012). According to Mahy, Shields, Taylor, and Todd (2010), the most identified barriers include lack of support, not wanting to engage in physical activity, and medical and physiologic limitations. There is a perceived lack of physical and emotional support from others for assistance with transportation, supervision, and financial needs to support engagement in physical activity (Mahy et al., 2010). Additionally, individuals with disabilities can have a general lack of motivation and limited PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 9 attention span for exercise, and activities that involve physical exertion have been identified as a barrier (Mahy et al., 2010). Individuals with disabilities have been found to have a general dislike for physical activity, often finding it boring and having more of an interest in sedentary activities such as watching television or playing video games (Mahy et al., 2010). Furthermore, individuals with disabilities may be more guarded about engaging in physical activity for fear that it is not safe to participate due to increased health risks secondary to their primary disability (Charles & Chinaza, 2018; Mahy et al., 2010). Discovering best practices to diminish barriers to the participation of individuals with disabilities in physical activity is essential for increasing engagement. Facilitators for Participation Although the literature has revealed many factors that hinder participation, research has also been conducted to identify the factors that enable and promote engagement in physical activity for individuals with disabilities. Having knowledge of motivating and facilitating factors is critical for parents, teachers, health professionals, and recreational and leisure coaches who have the goal of designing and implementing physical activity opportunities for this population (Shields et al., 2012). Mahy et al. (2010), identified three themes of facilitators to physical activity from the perspective of adults with down syndrome, parents of adults with Down syndrome, and employees of a day program for adults with down syndrome. The facilitation themes included support from others, physical activity was fun and had an interesting purpose, and routine and familiarity (Mahy et al., 2010). Additional facilitators identified by Shields et al. (2012) included the individuals motivation to be active, opportunity to practice skills, involvement of peers, family support, accessible facilities, proximity of location, better opportunities, and skilled staff and information. Improved health and fitness, as well as fun and PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 10 social contacts were also viewed as motivators for engagement in physical activity by a group of young adults with childhood-onset physical disabilities (Buffart, Westendorp, van den BergEmons, Stam, & Roebroeck, 2009). Promotion of Health and Well-Being Through Occupation According to Dr. Ann Wilcock (2005), occupational justice is the just and equitale distribution of power, resources, and opportunity so that all people are able to meet the needs of their occupational natures and so experience health and wellbeing (p, 149). She strongly believes that occupational therapists play a key role as advocators, enablers, and mediators in health promotion initiatives with overarching goals to enhance and enrich physical, social, mental, emotional, intellectual, and vocational capacities and to utilize wide-ranging, ageappropriate, and balanced occupations for all people (p. 154). Using the intervention approaches, creating and promoting as outlined in the Occupational Therapy Practice Framework (OTPF), occupational therapists have the expertise to develop and recommend occupation-based strategies to achieve multi-dimensional benefits (American Occupational Therapy Association [AOTA], 2014). Due to the amount of evidence supporting participation in physical activity for individuals with disabilities, health professionals can confidently recommend tailored physical activity programs for this population to contribute to their occupational well-being (Johnson, 2009). Programs specifically created to provide the opportunity for individuals to engage in physical activity through recreation, sports, and fitness at a tempo that meets their functional level without the overwhelming demands, pressure, competition, or intensity provides a means to incorporate physical activity into daily habits and routines. Theoretical Basis PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 11 This Doctoral Capstone Experience (DCE) was in partnership with Empower Sports, a nonprofit organization committed to offering sports and fitness programs to individuals with physical and cognitive disabilities in the regional Cleveland, Ohio area. The primary area of focus for this occupational therapy students (OTS) Doctoral Capstone Experience (DCE) project was program development with a secondary focus of research skills. The two components of this DCE project included (1) The development of the Ninja fitness class program curriculum tailored to meet the needs of the participant group with various disabilities (2) Determining the effectiveness of the program using quantifiable outcome measurements using physical and psychosocial variables. The program took place at Adrenaline Monkey, an adventure sports center in Warrensville Heights, Ohio on eight consecutive Thursday nights for a duration of 1 hour per session. The program participants included 15 individuals with varying disabilities ranging from 13 to 33 years-old. The occupation-based model (OBM) and theory that served as the theoretical basis for this DCE project was the Model of Human Occupation (MOHO) and the Theory of Planned Behavior (TPB). The MOHO, developed by Gary Kielhofner in 1980, takes a holistic and occupation-based approach using an open systems theory as the foundation. In relation to this DCE project, the human open systems were the 15 individuals with varying disabilities that will be participating in the fitness program. The open system includes three subsystems: (a) volition the motivation and voluntary involvement of a person in occupation (b) habituation organizing behavior into roles, habits, and routines (c) performance the action of the system exercising motor, process, and communication skills. The goal of the Ninja Fitness class program was to provide a meaningful opportunity to engage in physical activity in a fun, interactive, and challenging environment that promoted the importance of integrating healthy PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 12 habits and routines into daily life for improved occupational performance and overall quality of life. The theory selected to guide this DCE project was the Theory of Planned Behavior (TPB). According to Ajzen (1991), there are three formative predictors of human behavior: (1) attitude toward behavior refers to the degree to which a person has a favorable or unfavorable evaluation or appraisal of the behavior in question, (b) subjective norms refers to the perceived social pressure to perform or not to perform the behavior and perceived behavioral control refers to the perceived ease or difficulty of performing the behavior and it is assumed to reflect past experiences well as anticipated impediments and obstacles (pg. 188). Applying the TBP in relation to this DCE project means the more favorable the participants attitude is towards the behavior of participating in physical activity, the stronger their intention, willingness, and excitement to engage in the physical fitness program, therefore yielding greater benefits. This theory aligns with the foundational concepts described in the MOHO with a main overlapping construct being the influence of perception and attitude toward a behavior as important predictors for engagement and participation in an activity. Using the MOHO and TBP as guides for this DCE project, instilling motivation and applying meaning to work toward specific goals was essential for the creation and implementation of an effective fitness program for individuals with disabilities. Screening and Evaluation Needs Assessment A needs assessment was completed to gain an understanding of the areas needing improvement and gaps within Empower Sports as an organization. According to Bonnel and Smith (2018), conducting needs assessments help to name and document current situations in PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 13 preparation for making improvements (p. 49). This baseline data obtained from the needs assessment provides a foundation for taking the appropriate next steps to address the problems and gaps that are identified during this process. Different approaches used to conduct a needs assessment for Empower Sports included a strengths/weaknesses/opportunities/threats (SWOT) analysis, an informal interview with Empower Sports staff, and a thorough literature review to document and further support the need. Unstructured interview. First, an informal unstructured interview was conducted with the Executive Director and Program Director of Empower Sports to gain a better understanding for the areas within the organization that require improvement from the perspective of the staff. Various topics were covered. The first area of improvement identified by the staff was a need for program evaluation and outcome measurements to demonstrate the success of the programs that Empower Sports offers to then be communicated and conveyed to the appropriate individuals such as donors and parents involved with the organization. According to Behn (2003), it is important to carefully select outcome measures that have the appropriate characteristics that will assist in achieving a certain purpose to contribute a positive change within an organization. Secondly, a need for continued fundraising and revenue growth was a pertinent area that the staff felt was essential for sustaining and growing the organization. According to the Executive Director of Empower Sports, businesses and donors account for 70% of revenue, followed by 20% from fundraising events, and lastly 10% from program registrations and miscellaneous areas. Lastly, expanding programming to offer more variety in opportunities to the target population was identified as an area of need. The organization is continuing to expand and grow therefore; there is a larger demand for more program opportunities. There is a lack of opportunities for engagement in physical activity programs, PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 14 whether for leisure, recreation, or competition for children and adolescents in the United States that have either a disability or a chronic condition (Murphy & Carbone, 2008). Because there are significantly fewer programs offered that have a pace and intensity that meet the ability level of this target population, there are fewer options in the types of programs to choose from. Offering more variety in tailored physical activity programs allows for increased autonomy of the athletes to choose a program that fits their interest. SWOT analysis. Additionally, a SWOT analysis was conducted to gain a more comprehensive overview of Empower Sports. The results of the SWOT analysis can be viewed in Figure 1. Table 1 SWOT Analysis Summary of Empower Sports Strengths Holistic and inclusive experience Niche activities Long-term business relationships Volunteer opportunity Physical, social, and emotional benefits for participants Frequency and structure of programs provides structure and routine Variety of physical activity programs offered Team-oriented Offered Opportunities Active board members Fiscal Program expansion Branding Weaknesses Fundraising Networking Expanding programs Program evaluation Threats Competition Capacity Burnout Financial constraints The information obtained through the use of the SWOT analysis tool highlighted the strengths of the organization to build off of as well as the areas of weakness to be improved. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 15 The key strengths of the organization were that Empower Sports provides an inclusive experience for individuals with disabilities that offers both physical and social benefits in a motivating environment. The central weaknesses of the organization were lack of program evaluation and financial constraints that severely limit programming expansion. Supported literature. Finally, a comprehensive review of the literature was completed to provide a foundation of knowledge and to further support the need for this DCE project in partnership with Empower Sports. The research revealed the many benefits of physical activity for individuals with disabilities and the ever-increasing demand for program opportunities that meets the needs of this population (Murphy & Carbone, 2008). This literature review also provided evidence-based strategies that researches have used previously that were deemed effective in relation to this topic. The information obtained via communication with the staff, conducting a SWOT analysis, and completing a literature review verified the increasing need for a unique physical activity program opportunity in addition to outcome measures to determine progress and program efficacy for Empower Sports. The overall goals of implementing this communitybased Ninja fitness program using a health promotional approach were to instill healthy habits and routines into the daily lives of individuals with disabilities to improve occupational performance and overall quality of life. Community vs Traditional Clinical Settings Due to the nature of the community-based setting within the context of occupational therapy, the process of completing a screening and evaluation is a much broader and larger-scale approach than traditional clinical settings. Within the community-based setting, such as Empower Sports, the client is viewed as the population or community as a whole, whereas in PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 16 more traditional clinical settings, such as an inpatient rehabilitation unit, the client is an individual patient of the hospital. Therefore, when screening and evaluating at a population and community level, different variables are taken into account such as demographics, risk factors, health behaviors, attitudes, beliefs, environmental barriers, availability of health-related services, and effective motivators for change (Petruseviciene, D., Surmaitiene, D., Baltaduoniene, D., & Lendraitiene, E., 2018). Within an inpatient rehabilitation unit, screening and evaluations are more detailed and performed on an individual level; for example, range of motion measurements (ROM) and assessments of mental status. The screening and evaluation process also vary within the community-based setting depending on the type of practice setting such as an outpatient pediatric clinic or school. Within an outpatient pediatric clinic, the focus of an evaluation is typically directed more towards a child or adolescents ability to complete activities of daily living and developmental milestones that our foundational for performing daily occupations. In a school-based setting, the evaluation focus is more centered around skills related to an individuals performance in school such as handwriting, attention span, and cognitive processing. Despite these different approaches, the occupational therapy process as a whole remains extremely similar from setting to setting. Occupational therapists use the results of the screening and evaluation as the basis for developing a plan or treatment that will help individuals maximize their independence in occupations in which they find meaningful. Implementation Phase Determining Programmatic Needs The first step to implementation of this physical activity community-based program for individuals with disabilities was to develop the program curriculum. A meeting was held between Adrenaline Monkey and Empower Sports staff to collaborate on a Ninja Fitness PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 17 program curriculum. This meeting took place at Adrenaline Monkey approximately four weeks prior to the first session of the program. In attendance at this meeting were Adrenaline Monkeys general manager, program coordinator, and director of marketing & business development as well as Empower Sports executive director and site mentor for this project, and OTS spearheading this project. The meeting agenda consisted of determining an overall goal for the program, creation of the program curriculum, and important aspects to consider when working with individuals with disabilities in this setting. Patient demographics were considered during this step in the implementation phase to tailor the program to meet the participants ability and needs. The participant demographics are included in Table 1. Table 1 Ninja Fitness Program Participant Demographics Participant Gender Age Primary Disability 1 2 3 4 5 F M M F M 16 24 18 23 25 6 7 8 9 10 F M M M M 22 18 21 15 16 Cognitive delay DS ASD DS Developmental delay Language delay Hearing impaired ASD Epilepsy DS TBI ADHD Secondary Disability Anxiety Diabetes ADHD ADHD Aspergers Anxiety 11 M 13 ASD ADHD 12 M 20 DS 13 M 29 ASD 14 M 33 DS 15 M 22 DS Multiple Note. DS = Down syndrome; ASD = Autism Spectrum Disorder; ADHD = Attention Deficit Hyperactivity Disorder; TBI = Traumatic Brain Injury. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 18 Staff Development Because the Adrenaline Monkey staff had little experience working with this population and assisted in the implementation phase of this program, an informal brief overview of important aspects to consider and basic skills to initiate when working with individuals with disabilities was verbally provided to the Adrenaline Monkey staff present at the meeting to then be passed on to other employees involved in the program. Each of the participants diagnoses included an intellectual component that limited cognitive functioning to some degree, making it more difficult to complete mental tasks. Basic guidelines that were presented by the OTS included the following: (a) deliver clear instruction and demonstration while allowing time for processing, (b) offer frequent and positive motivation, (c) provide sameness, repetition, and routine, (d) encourage independence, (e) aim for just-right challenge, (f) speak to participants respectfully, (g) be patient and allow ample amount of time for task completion, and (h) embrace differences and individual desires and needs (McClain, OHara-Leslie, & Wade, 2018). It was emphasized that adjustments in communication and task completion may be required to allow the participants to engage as independently and successfully as possible. Each week of the program, the Adrenaline Monkey staff was observed implementing these principles when working with the program participants. The staff provided clear verbal, visual, and tactile cues when providing instruction on how to complete each task. Each task or activity was broken down into steps and ample amount of time for processing was given for clearer understanding. The staff was able to modify components of the obstacle courses to better fit the ability level of the participants and provide them with a just-right challenge. The staff also provided motivation and encouragement to the participants that oftentimes caused the participants to push themselves further. Feedback by the OTS was provided to the staff to PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 19 continue to implement these principles for continual and effective execution of the Ninja Fitness program. Leadership Implementing the Ninja Fitness class program provided the opportunity to develop and execute leadership skills that were essential for a successful program. To lead a group of individuals with varying ages, diagnoses, and ability levels, it required planning, communicating, and providing positive reinforcement. Prior planning and preparation for each session was extremely important and provided organization, structure, and efficiency of time. Tasks were delegated and stations were assigned to the staff prior to the beginning of the session. Each week, an email was sent to communicate the session format and expected roles and responsibilities. All questions from staff regarding the upcoming session were answered in advance. Due to the unique and non-traditional nature of this type of physical activity, many of the participants were hesitant and unsure about trying certain activities or tasks that were unfamiliar. Providing reassurance, using affirming words, and building rapport to increase trust were very important skills to develop as a leader of this group. Overtime, the participants as a group became more trusting of their leader which allowed for increased participation and engagement. Program Format and Curriculum The program took place at an adventure sports center, modeled after American Ninja Warrior, on eight consecutive Thursday nights for one hour in duration in Warrensville Heights, Ohio. A total of 15 participants of varying disabilities and ability levels participated in the program ranging from 13 to 33 years old. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 20 Name tags and Vivitar activity action tracker watches were distributed as participants arrived at the facility. Each session began with an introduction that consisted of the Word of the Day, plan for the session, and a warm-up. The Word of the Day was intentionally selected each week and provided the focus for that session. Following the introduction, the participants were divided into three groups of five based on ability levels. One Empower Sports coach served as the group leader for each group. During weeks one, two, four, five, and seven the groups rotated through three station- fitness area, climbing walls, and obstacle course. The stations consisted of physical tasks that tested strength, endurance, and agility and were tailored to meet the ability levels of the participants. During weeks three and six, the ropes course was offered as an additional option to the participants. Adrenaline Monkey guides supervised each station to provide demonstration, instruction, and safety procedures. A total of ten minutes was allotted at each station. Rest breaks and water were encouraged as needed. Each session concluded with a reflection and cool-down. The detailed program curriculum is included in Table 2. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM Table 2 Ninja Fitness Program Curriculum Week Word of the Day 1 Trust Stations Fitness Obstacle course Climbing wall 2 Confidence Fitness Obstacle course Volcano wall Circuit board 26 elements Teamwork Ropes course 4 Sportsmanship Fitness Empower Obstacle course Climbing wall Fitness Obstacle Course Climbing wall 6 Leadership Ropes course 7 Focus Fitness Obstacle course Climbing wall Competition day 8 Competitiveness Kettle bell swing Mountain climbers Beginner course Parkour boxes Island hops Sonic curve Up & over wall Angle run Climbing wall 3 5 Task Agility ladder Battle ropes Beginner course Parkour boxes Island hops Sonic curve Up & over wall Angle run Tyres Commando ladders Kettle bell overhead Burpees Dips Course #2 Speed walls Rope pull ups Jumping squats Relay race on course #1 Optional (athletes choose their wall) 26 elements Course #3 (race) Participants choice 21 PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 22 Outcomes and Discontinuation Activity Action Trackers Each week, all present participants wore an activity tracker watch around their wrist to track steps, calories, and distance traveled. Weeks three, six, and eight were excluded from data analysis as it was determined that the curriculum for those sessions were not representative of the program overall. The average as a group of each of the three categories (steps, distance, and calories) increased week to week. It is represented by the percentage change, the degree of change over time. For each of the three metrics, the percentage change displayed an increase of 44% due to the activity trackers algorithm. While this measurement is not an exact or perfect representation, the overall positive trend can be used to conclude that overall the average level of fitness increased as a result of weekly participation in the Ninja Fitness class program. The results for each metric are displayed below in Figure 2, Figure 3, and Figure 4. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 23 Figure 2. Average Number of Steps Taken Per Ninja Fitness Class of All Present Participants from Week 1 to Week 7 722 710 680 #of steps 650 625 629 4 Weeks 5 620 589 590 560 530 503 500 1 2 7 Figure 2. Line graph displays the change in the groups average number of steps taken per Ninja Fitness Class over a 7-week period. The number of average steps taken by the group increased by 44% from week 1 to week 7 as displayed in the figure by the positive trend line. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 24 Figure 3. Average Number of Miles Traveled Per Ninja Fitness Class of All Present Participants from Week 1 to Week 7 0.3 0.29 0.28 Miles 0.26 0.25 0.24 0.23 0.22 0.22 0.2 0.2 0.18 1 2 4 Week 5 7 Figure 3. Line graph displays the change in the groups average number of miles traveled per Ninja Fitness Class over a 7-week period. The number of average steps taken by the group increased by 44% from week 1 to week 7 as displayed in the figure by the positive trend line. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 25 Figure 4. Average Number of Calories Burned Per Ninja Fitness Class of All Present Participants from Week 1 to Week 7 18 16.9 17 Calories (kcal) 16 15 14.6 14.7 4 Week 5 13.78 14 13 1211.76 11 1 2 7 Figure 4. Line graph displays the change in the groups average number of calories burned per Ninja Fitness Class over a 7-week period. The number of average steps taken by the group increased by 44% from week 1 to week 7 as displayed in the figure by the positive trend line. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 26 Focus Group Each of the 15 parents of the program participants were invited via e-mail to participate in a one-hour focus group on the second to last week of the Ninja Fitness Class program to share their opinions and feedback related to the impact and value of the program on their athlete, as well as areas for program improvement. According to Krueger and Casey (2014), the recommended size of a focus group is typically between five and eight participants. Seven parents agreed to participate in this focus group. The focus group was facilitated by the OTS. A notetaker was present to record the key points. The parents participating in the focus group were informed that information they gave would be kept completely confidential and their name would not be associated with anything said in the focus group. Overall, the focus group participants provided positive feedback and useful recommendations for how the program can be improved in the future. The qualitative data obtained from the focus group was coded, then analyzed. Nine main themes were identified and fell into two main categories- program positives and program areas of improvement. Program positives. Unique. Several of the parents stated that they were initially attracted to register their athlete for the program because it was such a unique and non-traditional form of physical activity that seemed fun. Many of them reported that they were familiar with the television show, American Ninja Warrior, and viewed it as an uplifting and heartwarming show which also influenced their choice to register their child for this program. Increased self-confidence and self-initiation. The parents reported that they were able to observe increased self-confidence and self-initiation of their athlete as a result of participating in the Ninja Fitness class program. One of the parents explained that her son has gained much PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 27 confidence since participating in the program and observed a translation of this newly acquired confidence when he asked to try out for his schools tennis team. Another parent commented on the cognitive skills that were developed over the course of the program as many of the tasks required planning, sequencing, and initiation of the task for successful completion. The parent explained that she was able to observe her sons face and could see that it started clicking for him over time. Facilitated socialization. Overall, the participants of the focus group agreed that this program offered many opportunities to interact with peers and teammates. The parents commented on how their child cheered on their teammates and initiated conversations with teammates to encourage them to try a task. Peer modeling. The parents commented on how it was beneficial to have them participate and move through the stations together as group each week. They said that this gave the participants a if they can do it, I can do it attitude making their athlete more inclined to try something if they watched their peer doing it first. One of the parents phrased it as peer pressure to keep up in a positive way and a combination of challenging themselves to be better while also being a part of a group/team. The parents felt that this gave the athletes the opportunity to work as a team while simultaneously refining their own individual skills. Motivating. The parents of the focus group reported that as a result of the Ninja Fitness Class program, they have noticed that the transition time before attending the program has become smoother and their child has become more independent in preparing to get ready for the program by putting on the appropriate clothing and gathering necessary items. They believe this is largely attributed to their child looking forward to the program each week. Many of the parents stated that their child has reminded them of the program, rather than the parent PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 28 reminding their child. The parents reported that the Reaching New Heights Together! t-shirt they received in the beginning of the program has become an effective motivator to attend and their child associates the t-shirt with the program. A parent said, My son forgets to bring his pants to track practice yet remembers to wear his Ninja shirt each Thursday. Another parent shared that his son requested a new pair of gloves to improve his grip on the climbing holds and certain components of the obstacle course. This shows that he was independently thinking about working out and ways in which he can take his performance to a different level. Physically challenging. The parents agreed that the program offered multiple fitness benefits through stations that targeted the entire body. The main area of fitness that parents believed the gains were most observable was stamina. One parent said, It was apparent that my sons endurance increased as he was able to make it up a little bit higher on the climbing wall each week. Another parent shared that his son works out five times per week independently of this program and began to view the program as a way to apply his fitness gains. The parent reported, He is now muscling across an obstacle that was once difficult in the beginning of the program. The group of parents commented on how much they enjoyed seeing their child progress week to week by achieving new goals. Program areas of improvement. Increase demonstration and instruction. Many of the parents suggested to incorporate a scheduled time for orientation to the facility and a walk-through around the different stations prior to the first session for the participants. The parents added that this would allow the athletes to know what exactly to expect and how to correctly accomplish it. Environmental modifications. The respondents provided suggestions for modifications of the physical environment for optimal performance and safety. The first suggestion was to turn PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 29 the facilitys music volume down during the entire hour of the program to decrease extraneous stimuli and allow for increased focus and attention as many of the participants are highly sensitive to their environment. Secondly, they suggested numbering the stations so the participants have a visual aid to help them know what order they will be moving about the stations. The final suggestion was to place crash mats below the climbing walls to ensure a safer landing. Application and how tasks translate. The parents also expressed that they would like there to be more explanation provided to the participants of the purpose and importance of the activities and tasks that they were completing. A parent offered the example of completing an upper body exercise will help to improve arm strength that will help to climb higher up the climbing walls. Providing take-home exercises for the participants was also suggested for increased carryover. Ongoing Process for Quality Improvement This is the first time this type of program has been offered by Empower Sports; therefore, the data obtained from the activity trackers and the information gained from the focus group are of significant importance for future Empower Sports program development. The physical and psychosocial outcome measures are key in demonstrating the value of the Ninja Fitness Class program which further supports the need for continuation of this program and helps to establish a culture of quality within the organization. The outcome measurement results were shared and discussed with the Executive Director of Empower Sports and will soon be used to present to potential donors and sponsors in hopes of continuing to offer this program. The honest and open feedback received from the parents of the participants in the focus group will help to determine and prioritize aspects of the program to continue as well as areas PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 30 that can be improved for the next time that this program is offered. Improvements to the program that are planned to be implemented next time this program is offered include the following: a) offer an opportunity for future potential participants that are interested in registering for the program to trial the different activities that Adrenaline Monkey offers to determine if it would be a good fit, b) modify the environment by decreasing the volume of the music, number the stations, and place crash mats underneath the climbing walls, and (c) deliver an explanation and application for each activity and task to help the participants more fully understand the purpose of what they are doing to provide meaning and significance. Addressing Societys Needs This project is responding to the pressing societal need for specialized physical activity programs that promote healthy behaviors for individuals with disabilities. The rate of physical activity participation among individuals with disabilities is substantially lower than individuals without disabilities (Lakowski & Long, 2011) largely due to a lack of programs that offer a pace, intensity, structure, and level of fun that meet this populations needs, ability level, and interests (Murphy & Carbone, 2008). The outcomes of this carefully developed eight-week structured fitness program for individuals with disabilities demonstrate the physical and psychosocial benefits of participating. Overall, the parent and participant response to the program was that it was a fun, interactive, appropriately tailored, and physically challenging mode of achieving fitness and boosting self-confidence. Offering this diverse opportunity to individuals with special needs in the regional Cleveland community allows for added physical activity options for individuals with disabilities. Overall Learning Professional Communication PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 31 Colleagues. This project was completed in partnership with the Empower Sports staff as well as the Adrenaline Monkey Staff. In the beginning stages of developing this program, developing trusting relationships with colleagues was essential for building the foundation for these professional relationships. To prevent confusion, the purpose of the DCE project and the occupational therapy students role in this project were clearly communicated. Email and faceto-face conversations were the primary methods of communication with the staff involved in the Ninja Fitness class program. The occupational therapy student intentionally tried to avoid using occupational therapy jargon and technical terms when electronically and verbally communicating to prevent misunderstanding. If occupational therapy jargon was used, the occupational therapy student made sure to provide a definition and meaning in terms in which they could easily understand. For example, in a meeting with Adrenaline Monkey Staff and Empower Sports staff, all of those present did not have a clinical or therapy background. The OTS was explaining to them the importance of determining the just-right challenge, a termed conceived by occupational therapist and educational psychologist Jean Ayres (Cole & Tufano, 2008), for the participants when developing the program. The OTS described this term to them as a careful balance between the challenge of the task and the skills of the person and provided them with an example. The OTS added that finding this balance may take some trial and error and will typically vary from person to person as the participants of the program were of varying ability levels. Client. Communication techniques and strategies were used to increase participant engagement in the program. For example, in the beginning weeks of the program, some of the participants were tentative and appeared to have difficulty self-initiating tasks. Therefore, additional verbal, tactile, and visual cues were provided. The participants responded positively PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 32 to the cues and were able to more fully understand how to complete the task and what was expected of him/her. Overall, by the last week, significantly less cueing to complete tasks was required. Family. The majority of the participants parents were present at each session of the program and were very engaged and communicative with their child as well as the staff. When speaking with the parents the OTS found it very important to be an active listener as they best knew their childs behaviors and what they respond to. For example, a parent informed the OTS that their child had an exacerbation of their rheumatoid arthritis that may impact their ability to complete some of the tasks for that day and may lead to frustration. The OTS was then able to communicate this to the rest of the staff ahead of time to make them aware and make adjustments accordingly. When communicating with the parents of the participants the OTS also found it to be beneficial to speak about their child in a positive tone. For example, one of the parents was disappointed that their daughter was having difficulty with a specific obstacle on the obstacle course and was discouraged that she would not be able to complete it. The OTS pointed out how persistent she was as she continued attempting and how close she was to succeeding as compared to the previous weeks. The parent agreed and was then able to provide positive encouragement to his daughter. Leadership and Advocacy In general, the OTS was able to advocate for the profession of occupational therapy by educating others on the core principles of the profession. Integrating knowledge and background in occupational therapy by the OTS made a profound impact in the development and implementation of the Ninja Fitness class program. Although occupational therapy services PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 33 were not directly administered, the OTS was able to apply strategies foundational to the profession, such as modifications and adapting activities, to the program. The OTS was also presented with opportunities to advocate for the participants of the program. For example, during one session of the program there was an influx of people inside the facility due to school field trips. This resulted in an extremely loud, chaotic and overstimulating environment that made it challenging to carry out the program curriculum as planned. Although this situation was out of the staffs control in that moment, there were steps taken to prevent this situation from occurring again. An e-mail was composed expressing disappointment and concern regarding this situation. Included in the email was that the participants were easily distracted, and their safety was compromised. The purpose of this communication with the staff of Adrenaline Monkey was to prevent this from happening again and to request to be notified if there were scheduling conflicts in the future. The General Manager of Adrenaline Monkey was apologetic and assured the staff that this would not happen again. Another example in which the OTS advocated for the participants was after the initial week of offering the ropes course, the question was raised whether this activity should be continued to be offered as originally planned within the curriculum since only about half of the participants attempted and completed the ropes course the first week that it was offered. The OTS stated that she was a strong proponent for continuing to offer the ropes course as it would be disappointing to those that enjoyed this activity, despite the fact that only a few chose to complete it. It was an activity that offered many physical and psychosocial benefits and the OTS felt that the participants should be given the choice. By advocating to continue to offer the PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 34 ropes course along with other choices in activities the OTS was able to foster their autonomy and uphold a participant-centered program. This experience greatly enhanced leadership skills that served to be instrumental for planning and implementing a successful community-based program for individuals with disabilities. Over the course of this DCE the OTS gained confidence to take initiative and be verbal in situations in which she was capable of managing. The OTS learned the importance of effective communication and understanding that each individual has different learning styles and motivating agents for change. The leaderships skills acquired during this DCE extend beyond the generalist level and will be of great value in the OTSs future practice as an occupational therapist. Implications for Occupational Therapy Several interrelated constructs outlined in the Occupational Therapy Practice Framework: Domain and Process (AOTA, 2014) were considered for this project to facilitate growth and change of the program participants. There are two primary occupations, or life activities that this group was engaging in throughout the Ninja Fitness Class programhealth management and maintenance and social participation. Client factors of the participants that were targeted through participation in physically exerting tasks include muscle functions (power, tone, and endurance), movement functions (eye-hand and eye-foot coordination, bilateral integration, crossing the midline, and gross motor control), and cardiovascular and respiratory functions. Performance skills, skills that influence the ability to participate in occupations, that were developed through participation in the program include motor skills, process skills, and social interaction skills. Performance patterns, or habits, routines, and roles that support occupational performance were instilled by offering the Ninja Fitness Class on a PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 35 consistent weekly basis. The context and environment, or the physical and social conditions surrounding the participants, were considered greatly and modified accordingly in efforts to set the participants up for success. Tasks were adapted physically when possible to match the ability levels of the participants, distracting stimuli that was within the staffs control were eliminated from the environment, and smaller group sizes were intentional to promote a social environment that was not overwhelming and promoted peer interaction. The results of this Doctoral Capstone project reinforced the importance of creating a program that is fun, purposeful, and engaging to promote regular and consistent participation in physical activity. This project demonstrates the multidimensional benefits, both physical and psychosocial, of a tailored fitness program for individuals with disabilities that support health, well-being, and occupational justice. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 36 References Aizen, I. (1991). The theory of planned behavior. Organizational Behavior and Human Decision Processes, 50, 179-211. American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process. American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. http://doi.org/10.5014/ajot.2014.682006 Behn, R. D. (2003). Why measure performance? Different purposes require different measures. Public Administration Review, 63(5), 586-606. Bonnel, W. & Smith, K.V. (2018). Proposal writing for clinical nursing and DNP projects, Second edition. New York: Springer Publishing Company. Buffart, L.M., Westendorp, T., ven den Berg-Emons, R.J., Stam, H.J., & Roebroeck, M.E. (2009). Perceived barriers to and facilitators of physical activity in young adults with childhood-onset physical disabilities. Journal of Rehabilitation Medicine, 41(11), 881885. Burgeson, C.R. Wechsler, H., Brener, N.D., Young, J.C., & Spain, C.G. (2000). Physical education and activity: Results from the School Health Policies and Programs Study 2000. Journal of School Health, 71(7), 279-293. Centers for Disease Control and Prevention (2015). Developmental disabilities. Retrieved from https://www.cdc.gov/ncbddd/developmentaldisabilities/ Charles, O.O., & Chinaza, N.K. (2018). Barriers and facilitators of physical activity participation among youth with visual and hearing impairments in Nigeria: A qualitative study. Palaestra, 32(3), 25. PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 37 Cole, M., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorafare, N.J.: SLACK Incorporated. Dykens, E.M., Rosner, B.A., & Butterbaugh, G. (1998). Exercise and sports in children and adolescents with developmental disabilities: Positive physical and psychosocial effects. Child and Adolescent Psychiatric Clinics of North America, 7(4), 757-771. Heath, G.W., & Fentem, P.H. (1997). Physical activity among persons with disabilitiesA public health perspective. Exercise and Sport Science Reviews, 25, 195-234. Johnson, C.C. (2009). The benefits of physical activity for youth with developmental disabilities: A systematic review. American Journal of Health Promotion, 23(3), 157-167. Kliziene, I., Klizas, S., Cizauskas, G., & Sipaviciene, S. (2018). Effects of a 7-month exercise intervention programme on the psychosocial adjustment and decrease of anxiety among adolescents. European Journal of Contemporary Education, 7(1), 127-136. Krueger, R.A., & Casey, M.A. (2014). Focus group: A practical guide for applied research. Thousand Oaks, CA: Sage publications. Lakowski, T. & Long, T. (2011). Proceedings: Physical activity and sport for people with disabilities. Washington, DC: Georgetown University Center for Child and Human Development. Mahy, J., Shields, N., Taylor, N.F., & Dodd, K.J. (2010). Identifying facilitators and barriers to physical activity for adults with Down syndrome. Journal of Intellectual Disability Research, 54(9), 795-805. McLain, K.B., OHara-Leslie, E.K., & Wade, A.C. (2018). Working with people with developmental disabilities. Retrieved from https://milnepublishing.geneseo.edu/homehealth-aide/chapter/working-with-people-with-developmental-disabilities/ PHYSICAL AND PSYCHOSOCIAL BENEFITS OF A FITNESS PROGRAM 38 Murphy, N. & Carbone, P. (2008). Promoting the participation of children with disabilities in sports, recreation, and physical activities. American Academy of Pediatrics, 121(5), 10571061. Petruseviciene, D., Surmaitiene, D., Baltaduoniene, D., & Lendraitiene, E. (2018). Effect of community-based occupational therapy on health-related quality of life and engagement in meaningful activities of women with breast cancer. Occupational Therapy International, 1-13. Rimmer, J.H., Rowland, J.L., &Yamaki, K. (2007). Obesity and secondary conditions in adolescents with disabilities: Addressing the needs of an underserved population. Journal of Adolescent Health, 41(3), 224-229. Sardinha, L.B., & Ekelund, U., dos Santos, L., Cyrino, E.S., Silva, A.M., & Santos, D.A. (2015). Breaking-up sedentary time is associated with impairment in activities of daily living. Experimental Gerontology, 72, 57-62. Shields, N., Synnot, A.J., & Barr, M. (2012). Perceived barriers and facilitators to physical activity for children with disability: A systematic review. British Journal of Sports Medicine, 46(14), 989-997. US Department of Health and Human Services. (2000). Developmental Disabilities Assistance and Bill of Rights Act. Public Law, 106-402. Wilcock, A.A. (2005). Relationship of occupations to health and well-being. Occupational Therapy: Performance, participation, and well-being, 3, 134-164.  ...

... Running Head: THE TRANSITION HOME 1 Occupational Therapys Role in Pediatric Oncology Care: The Transition Home MacKenzie Sauer May 3, 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: Taylor McGann, OTR, MS, OTD 2 A Capstone Project Entitled Title: Occupational Therapys Role in Pediatric Oncology Care: The Transition 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 MacKenzie Sauer 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 3 Abstract Background: With strict rules on isolation following a bone marrow transplant, the pediatric cancer population suffers from delayed social interaction and developmental skills, impacting their roles and occupations (Connelly, 2015). Follow-up care after transplant is essential for successful recovery but occupational therapy is currently not included within the follow-up planning team. DCE Aim: The purpose of this DCE was to determine the role that occupational therapists could play in easing the transition of families leaving Brents Place, a non-profit organization that provides clean-safe living for families undergoing immune-compromising medical treatment, to decrease occupational deprivation. Needs Assessment: A survey was created and sent to past families to identify the gaps in supports currently offered to families returning home. Results showed that families would benefit from increased emotional and social support and indicated a need for validation in their feelings and experiences when attempting to return to a normal routine. Implementation: A check-out process was created for families leaving Brents Place that included necessary resources addressing national and local organizations for support, home maintenance tips, and advice for returning to a normal routine. Families would also be given the opportunity for closure by adding their thumbprint to a mural, which would be displayed yearly at the facility. Conclusion: When transitioning home, families should be aware of the impact treatment has on their future. OTs have the skills necessary to fill this role. It is important that oncology teams consider OTs ability to support families affected by chronic disease. 4 Literature Review Stem cell transplant (SCT) is one procedure used to treat invasive conditions such as cancer (Connelly, 2015). A SCT is completed when an individuals healthy blood or bone marrow cells have been completely consumed by more common forms of treatment including radiation and chemotherapy (Connelly, 2015). SCT procedures are able to restore cells through either blood marrow, peripheral blood stream, or umbilical cord blood (Connelly, 2015). The procedures used vary depending on the source of the blood. If blood is taken from the client themselves, the transplant is called autologous, if the blood comes from a donor, it is called allogeneic (Connelly, 2015). When taken from a donor, the blood is processed through multiple tests to check for matching proteins and antigens (Connelly, 2015). The blood is further prepared with T-cell depletion to decrease the chance of graft-versus-host disease (GVHD), where the transplanted cells identify the body as a foreign substance and attack it (Connelly, 2015). Prior to a SCT procedure, the body is exposed to highly concentrated chemotherapy to kill any unwanted or diseased cells to make room for the new cells. The goal of the SCT process is to achieve engraftment which occurs when new healthy cells attach and begin to grow in the patients bone marrow (Connelly, 2015). Symptoms of Oncology Treatment The SCT process is long and taxing on the body and requires frequent hospital visits, as well as strict rules related to food and living environments in order to ensure safety (Connelly, 2015). This process can leave the individual fatigued and deconditioned, due to deficits of decreased strength and range of motion, decreased skin integrity, and psychosocial symptoms such as anxiety and depression. These symptoms impede ones performance in ADL and IADL 5 participation (i.e. self-care, home maintenance, work, and leisure) and impact their roles as a student, friend, or caregiver (Connelly, 2015). Reported symptoms from SCT and its associated medications that commonly impede ones participation in occupations include nausea, vomiting, fatigue, skin burns, mouth sores, decreased sensation, and deconditioning (Connelly, 2015). During treatment, isolation is important in order to maintain the individual's health by reducing exposure to environmental bacterias while the immune system is compromised (Connelly, 2015). Depending on the situation, isolation may last for years following treatment which can be especially devastating to children who are forced to withdraw from school. This mandatory withdrawal impedes the development of important skills for social interaction with peers including problem solving, adaptability, and pragmatic skills (Connelly, 2015). Psychosocial symptoms are another factor that hinder an individuals participation in their daily occupations. Children have reported decreased self-esteem, emotional wellbeing, and social interactions, which impact overall quality of life following cancer treatment (Thorsteinsson et al., 2013). The entire family unit can be affected by a family members battle with cancer as well. In fact, the study of psychosocial support for caregivers with a child with a life-threatening disease has been identified as one of the most important research topics in pediatric palliative care (Baker et al., 2015). Some of the burdens faced by children undergoing oncology treatment include guilt, anxiety, or fear due to the demands placed on their family members (Stowell, 1987). When family members are able to identify these feelings, they tend to do more for their child in efforts to decrease the stress on their child. In turn, this increases the dependability of the child on their caregiver, decreasing skill development in autonomy, motivation, and initiation, all of which are needed to transition successfully into adulthood (Stowell, 1987). 6 One area largely impacted by a diagnosis of cancer is ones relationships. In one study completed by Manav and Ocakci (2016), children reported their parents and siblings as their closest social relationships, taking the place of their peers. The children rated these relationships as important. The study showed that the nature of a chronic condition strained these relationships, impacting their development (Manav & Ocakci, 2016). Late-onset and long-term deficits. Many childhood cancer survivors will experience late effects, defined as: complications, disabilities, or adverse outcomes that are the result of the disease process, the treatment, or both (NRC, 2003, pg. 49). The National Research Council (2003) reviewed the literature and found that late onset deficits are commonly experienced by almost of survivors as late as 5 years following their diagnosis (Garre et al., 1994; Oeffinger et al., 2000; Stevens et al., 1998; and Vonderweid et al., 1996). Many families are unaware of such effects and do not take the necessary follow up procedures suggested by research to decrease the presentation of these losses. The most common deficits experienced by this population include decreased cognition, learning disabilities, social skills deficits, behavioral issues, and educational/vocational difficulties (NRC, 2003). Other physical deficits reported by childhood cancer survivors include organ dysfunction, decreased musculoskeletal functioning/strength, infertility, stunted growth, weight gain, relapse, decreased sensation, and poor dental health (NRC, 2003). The deficits presented in each patient are dependent on the location of the diagnosed cancer as well as the dose and location of treatment. These deficiencies can be identified early in the recovery process and resolve with little consequences however, some cases develop into chronic disabilities that are further worsened by normal deficits associated with aging (NRC, 2003). Research specifically focusing on children with CNS oncology diagnoses show that 7 patients do not lose information or skills prior to their treatment but rather require more time and effort to learn new skills afterwards, impeding the childs ability to meet developmental milestones at the same time as their healthy peers. For many children, these deficits may not present until the onset of puberty due to the bodys rapid change and growth (NRC, 2003). Fortunately, studies have shown that families often adjust well to their new reality regardless of what they have been through. However, all survivors report feelings of worry or anxiety about the recurrence of symptoms, treatment, and remission for the long-term (NRC, 2003). It is therefore important that OT involve themselves in providing coping mechanisms for decreased stress through use of skilled emotional and social interventions. Other psychological effects studied among childhood cancer survivors overall show mixed results. Some adolescents/adults choose to make up for lost time and take more risks than their healthy peers in effort to celebrate life. Others choose to take less risks to preserve the life they fought so hard to keep (NRC, 2003). Symptoms of Stem Cell Transplant Through the advancement of modern medicine, patients who receive a SCT as part of their intervention for nonmalignant conditions, are living longer (Socie, 2003). This supports the need to better prepare for and understand the associated effects that can result from this treatment process (Socie, 2003). Although there are similarities in the way SCT affects an oncology patient, there are also some significant differences associated with the treatment of nonmalignant conditions (Socie, 2003). Of greatest concern is the development of chronic graft-versus-host disease (cGVHD), which increases the mortality rate by 15% when compared to survivors of SCT without cGVHD. Late onset effects most commonly reported by survivors of SCT include 8 deficits in vision, lung functioning, liver complications (related to increases of iron in the body), decreased bone composition, dental decay, decreased growth, and fertility issues (Socie, 2003). Theoretical Guide Under the direction of Maslows Hierarchy of Needs, one must first meet their most basic human needs (including food and shelter) before they are able to consider their more complex needs (such as love and belonging) (McLeod, 2018). The goal is to reach self-actualization. Selfactualization is a state in which a person who has reached their full potential. Maslow believed that everyone is capable of obtaining self-actualization, however life circumstances often hinder them from reaching their goals (Cole & Tufano, 2008; McLeod, 2018). Brents Place is a non-profit that provides clean, safe housing for children and their families while the child receives treatment for a life-threatening condition. Oftentimes, the child has traveled far from home to receive a SCT for oncology treatment. Brents Place website states, when a child is faced with a life-threatening crisis like cancer, it impacts the whole family...it devastates finances, impacts emotional health, and on the most basic level, affects day to day life for every member of the family (Brents Place, 2019). The families in this situation are demonstrating Maslows Hierarchy of Needs theory and are void of housing, food, and transportation needs. The staff members at Brents Place provides families with programs and resources that fit these basic needs so that families can advance the hierarchy and focus their attention on their more complex medical needs (Cole & Tufano, 2008; McLeod, 2018). When addressing a major change, occupational therapists must consider the impact that the environment has on the clients ability to engage in their meaningful occupations. While in an unfamiliar environment, children and their families may find it difficult to maintain their normal lifestyle. The Ecology of Human Performance (EHP) model discusses this relationship 9 by suggesting that when in the appropriate context, the client will be able to successfully function using their skills (Cole & Tufano, 2008). Once a family has moved out of Brents Place and has returned home, occupational therapists can use the above-mentioned theory and model to structure a program to specifically meet the clients changing needs. Utilizing structure and establishing relationships between all involved variables in one advantage in using theory to guide practice (Bonnel & Smith, 2018). OTs Role in Oncology Care During treatment, families are likely to encounter a disruption in their normal schedule of functioning both during and after oncology treatment, supporting the need for skilled occupational therapy services in all stages of the disease (Palmadottir, 2010). Following a traumatic event, one may reconsider their definition of meaningful and change their needs and interests, requiring direction, which can be provided by an occupational therapist (Palmadottir, 2010). Occupations themselves can be used as therapeutic agents. As stated by Palmadottir (cited in Unruh, & Elvin, 2004; Vrkljan, & Miller-Polgar, 2001; Unruh, Smith, & Scammel, 2000), current literature shows that among patients with breast cancer, continued participation in occupations increased womens personal perceptions of health, wellness, and feelings of normalcy and capability despite their prognosis. As described in Palmadottirs (2010) results, when patients were able to maintain control and stability within their daily schedule, they were able to decrease negative feelings about their wellness. The same was shown to be true among children diagnosed with cancer, as shown by Mohammadi and colleagues in 2017 (cited in Hassani, Hasani, & Amini, 2016), occupations not only provided mental, social, and physical benefits but also taught the children important skills needed for adulthood. In the same study, 10 both groups of children (those who were healthy verses those diagnosed with cancer) reported enjoyment in completing their daily occupations and both groups accepted help equally (Mohammadi et al., 2017). This supports the need to continue independent participation in daily occupations throughout treatment. Identified Barriers One of the barriers to OTs participation in oncology rehab is the current lack of training available for this specific practice area, categorizing oncology care as an emerging area of practice in occupational therapy (Silver & Gilchrist, 2011). This is expected as statistics show that childhood cancer makes up only 1% of all new cancers diagnosed in the United States (American Cancer Society, 2018). It is important that OTs involve themselves in oncology care as childhood cancer is the second leading cause of death for children ages 0-14 (American Cancer Society, 2018). This presents with an important job for the healthcare professional: to advocate for their scope of practice and encourage others understanding for more appropriate and necessary referrals (Silver & Gilchrist, 2011). One article highlights the importance of oncology rehabilitation by stating, In effect, the medical system creates a situation where high functioning individuals are given life-prolonging treatments and then left to struggle with how to recover from the toxic adverse effects of these therapies (Silver & Gilchrist, 2011, p. S7). Survivorship In more recent medical research, topics have focused on developing a follow-up plan for delivering care to childhood cancer survivors following their treatment (National Research Council [NRC], 2003). This is significant as the number of childhood cancer cases is increasing (NRC, 2003) however, developing an effective plan is difficult as each case, diagnosis, treatment plan, and family genetics vary. 11 As defined by the authors of Childhood Cancer Survivorship: Improving Care and Quality of Life (2003), a high quality survivorship program would include the following: a wide range of direct services to educate, prevent, and rehabilitate from late onset effects; bridge any gaps and develop appropriate communication between the primary care and specialty care professionals involved; utilize principles of education and occupational services to coordinate the best possible care; and complete research that describes the effects of cancer to better plan and understand the disease process beginning at diagnosis (NRC, 2003). When provided with the above-mentioned resources, a program would help to decrease the number of survivors who lack in the knowledge needed to obtain proper long-term follow-up care, the current problem faced by this population (NRC, 2003). DCE Purpose Even with the use of survivorship programs in recent oncology treatment, occupational therapy is not identified as a part of the interdisciplinary team (Morey, Urbina, & Muenks, 2018). Current programs offer a wide range of services to patients including education, observation, and follow up sessions to monitor for signs of late-onset effects, relapse, and secondary diagnoses of cancer (Morey, Urbina, & Muenks, 2018). Professionals on the team providing the above-mentioned services currently include: an oncologist, nurse practitioner, psychologist, social worker, pharmacists, financial counselor, and dietician (Morey, Urbina, & Muenks, 2018). While most literature works to describe the quality of life in cancer survivors (Mohammadi et al., 2017), there is a current lack in literature describing the effects of rehabilitation services during and following oncology treatment. This project aims to help fill this gap by identifying OTs role in ongoing pediatric oncology care. 12 Needs Assessment and Evaluation Through completion of a strengths, weaknesses, opportunities, and threats (SWOT) analysis, an area of improvement of OT interest includes putting into place a transition program for families leaving Brents Place. This problem aligned with current staff development goals to provide a celebration ceremony to families who are able to move home. In summary, strengths of Brents Place include the success and support for current programs, high volunteer and community support, and partnerships with the surrounding treating hospitals. Opportunities exist to provide families with continued support after they leave Brents Place. Weaknesses and threats to program development include space, time, funds, resources, the lack of a medical team, and the lack of a current follow-up or exit program. The community developed at this home-away-from-home among families going through similar experiences does not tend to leave the walls of Brents Place which could contribute to increased stress and poor success in the transition home. To gain insight on what role Brents Place could fill to provide local supports to families and ease this transition, a needs assessment was created. Families who returned home following the loss of their family member, or who went home on hospice care were not contacted. The questions and topics addressed were not appropriate for this client-base therefore, a new development goal was constructed: a second needs assessment will be sent out to grieving families to address gaps in areas that Brents Place could assist in providing emotional support and coping mechanisms after the loss of a child. The current needs assessment was posted on the Brents Place Families Facebook page and the client database was used to determine who was appropriate to receive the survey via email. Biannually, Brents Place sends out satisfaction surveys to address clients needs in terms of programs and supports. To avoid sending out two surveys back-to-back these questions were 13 used as introductory questions, followed by basic demographic questions regarding the patients stay and disease experience. Questions included in the needs assessment can be found listed in Figure 1. An incentive was provided with entry to win a $50 gift card to those who submitted a completed questionnaire within 2 weeks. Needs Assessment Questions: 1. (Brents Place Past Families Satisfaction Questions/Demographic Questions) When did your family stay at Brents Place? 2. How long was your familys stay at Brents Place? 3. At which Brents Place location did your family stay? a. Aurora Campus b. Marion St c. Other (please specify) 4. What was the patients age during your stay at Brents Place? 5. What were some of the best things about your stay at Brents Place? 6. What are some things that could have been changed or added to improve your stay at Brents Place? 7. Do you currently stay connected to Brents Place? a. No>>Why not? Are there ways that are not currently offered that youd be interested in using to stay connected to Brents Place? If so, what are some suggestions you have? b. Yes>>How so? Do you have suggestions for other ways that are not currently offered to help you stay connected to Brents Place? 8. (Long-term Care Follow-Up Plan Questions)Does the patient in your family have a cancer diagnosis? a. Yes>>Are you familiar with the late onset deficits (effects that show up later in life) associated with recovery from cancer treatment? b. No>>What was the patients diagnosis? Continue to #9 i. Yes>>What are they? Continue to ii ii. No>>Are you familiar with the common long-term effects (effects that show up during treatment and last a long time) of cancer treatment recovery? 1. Yes>>What are they? Continue to #9 2. No>>Continue to # 9 9. Did the patient receive a bone marrow transplant/stem cell transplant as part of their treatment? a. Yes>>Are you familiar with the late onset effects (effects that show up later in life) associated with recovery from a bone marrow transplant? i. Yes>>What are they? Continue to ii ii. No>> Are you familiar with the common long-term effects (effects that show up during treatment and last a long time) associated with the recovery from a bone marrow/stem cell transplant? 1. Yes>> What are they? 14 2. No>> What treatment(s) did the patient receive? a. Are you aware of any late onset effects (effects that show up later in life) of the treatment(s) the patient received? i. Yes>> What are they? ii. No>>Are you aware of any long-term effects (effects that show up during treatment and last a long time) associated with the patients treatment(s)? 1. Yes>>What are they? 2. No>>Continue to #10 10. What was the most challenging part about moving out of Brents Place? 11. What was the best part about moving out of Brents Place? 12. When my family left Brents Place it was because, a. The patient was healthy enough to leave b. The patient passed away or was placed on hospice care 13. What could Brents Place do to support other families when they are leaving Brents Place under these difficult circumstances? 14. What is something that we could do to make the move out of Brents Place more special? Some examples of celebrations include ringing a bell, staff members line the hallway to clap/cheer as your family walks out the door for the last time, sign a wall/mural, etc. 15. What are some things the patient struggled with most regarding returning to a normal routine (for example, interacting with peers at school or work, eating a normal diet, following a bedtime/morning routine, etc.)? 16. What deficits impacted the patients ability to participate in their daily routine most? 17. What did they do to overcome these deficits? 18. What resources were/would have been helpful when coping with the mentioned deficits? 19. Before leaving to go home, were you given any information (either from Brents Place or the hospital) relevant to your circumstance of leaving about what to expect medically, logistically, emotionally, etc.? a. Yes>>What was the most helpful resource you were given? Continue to b b. No>>What is something that would have made your transition to life after Brents Place easier? 20. (Emotional Support Questions) How do the members of your family (including you) deal with stress? 21. Would it be helpful to have resources that provide tips on dealing with stress related specifically to recovery or loss of a loved one? a. Yes>>Please indicate which of your family members are part of a social support group. If none are, please select none. i. Patient ii. Sibling iii. Caregiver iv. None v. Other (please specify) 15 b. No>>Are you or any of your family members interested in joining a social support group? i. Yes>>Are you already aware of any existing support groups relevant to your situation in your community (or online)? 1. Yes>>Do you know the steps you would need to take to sign up for the group(s)? a. Yes or No>> Continue to #22 2. No>>Since you dont already know of any groups available to you but are interested in joining one, do you know how to find out if there are relevant support groups in your area or online? a. Yes or No>>Continue to #22 ii. No>>Continue to #22 22. Are you aware of the national organizations that provide survivorship groups/support programs? a. No>>Are you interested in learning more about them? i. Yes or No>> Continue to #23 b. Yes>>Are you a member of or does your family receive any type of support from any of these organizations? i. Yes>>Which ones? 1. How are they helpful? ii. No>> Continue to #23 23. What suggestions do you have for Brents Place specifically to help make the transition to life after Brents Place easier for families? 24. OPTIONAL: If you indicated that you would like more resources from the topics above please provide a good email address to reach you at. Note: this is optional, the survey is anonymous, your answers cannot be traced back to your email address 25. Any last comments or insights your wish to share regarding the transition out of Brents Place and back to a new normal? Or long-term follow up care for the patient, if applicable? Figure 1. Needs assessment questions. This figure contains questions asked in the needs assessment with corresponding follow-up questions dependent upon the answer to the previous questions. Results Regarding the transition home, families identified the following struggles and concerns: the loss of social support from staff and other understanding families, a lack of physical resources (groceries, gas money, etc.) contributing to overwhelming feelings emotionally, physically, and mentally, worry due to concerns of relapse and the process of disease recovery, and worry from the pressure to fit back into a normal routine and schedule. All 51 participants who responded to the needs assessment reported interest in participating in an exit ceremony or 16 activity before leaving Brents Place to assist with closure. Occupational therapy should be involved with follow-up care because they have the skills necessary to provide resources and suggestions for the above-mentioned concerns. Research suggests that those diagnosed and treated for cancer are likely to be subjected to long term disabilities, affecting their ability to participate in a daily routine (Adler & Page, 2008). Psychological and social skills are also affected but addressed less than the physical disabilities by medical professionals (Adler & Page, 2008). Per past families of Brents Place, deficits most affecting patients included decreased cognition, endurance, strength, and immune compromised status, affecting participation in school/social engagements, eating/meal prep, and following a daily routine, supporting current literature. The degree of a mental health disability in patients with cancer and their families vary depending on the situation. Patients and their family members commonly present with symptoms of depression, anxiety, post-traumatic stress disorder (PTSD), and adjustment disorders (Adler & Page, 2008). Stress among all family members including the patient, has been shown to be positively correlated. Worry and stress is particularly high among caregivers of patients with cancer. In fact, parents of children with cancer were shown to have higher rates of PTSD diagnoses than the patient, showing the important role OT can play to keep the entire family happy (Adler & Page, 2008). In turn, when caregivers are emotionally unavailable to support the patient, the patients stress increases, causing a cyclical effect that is difficult to control (Adler & Page, 2008). 79% of participants in the needs assessment reported that it would be helpful to have resources regarding coping mechanisms for handling the stress specific to recovery. 17 Traditional Area of Practice Occupational therapy has been present in mental health since the field was founded in the early 1900s (Castaneda, Olson, & Radley, 2013). OT continues to have a strong presence in mental health as the focus of recovery moves from a medical basis to community integration. Recovery itself has been identified as a long-term process with end results to be independently integrated back into the community (Castaneda, Olson, & Radley, 2013). Individuals who survive cancer may experience emotional distress resulting from the physical symptoms reported with the disease process such as fatigue, pain, and decreased sensation (Alder & Page, 2008). Roles affected by the physical symptoms of cancer can include an inability to participate in school and work tasks, home maintenance tasks, social and family roles, and leisure participation, decreasing overall morale and quality of life (Adler & Page, 2008). OTs current role in mental health can utilize skilled services to increase a clients independent participation in their roles within their natural home environment. Skilled interventions to reach this overarching goal can include modifications to the patients physical environment, providing appropriate education, the identification of leisure activities, and providing resources necessary to request appropriate accommodations for community functioning (Castaneda, Olson, & Radley, 2013). 61% of respondents in the current needs assessment were unaware of the national organizations available to provide support to the entire family, 65% of those respondents reported interest in learning more about them. This area would be important to include in OT interventions to address deficits in mental health and emotional stress. 18 Emerging Area of Practice Occupational therapy in oncology care is considered an emerging area of practice, especially when considering the niche of pediatric oncology care. The addition of rehabilitation in oncology care throughout the entire disease process is being considered as recommended by Morey, Urbina, and Muenks study in 2018. Another identified emerging area of practice in occupational therapy is preventative care. OT has the skills necessary to suggest appropriate lifestyle changes to promote wellness and prevention care through participation in daily, meaningful activities specific to the oncology process (Nielsen & Christensen, 2018). Current weight loss programs run by occupational therapists aimed to promote health and wellness have shown success through OT-based principles such as setting realistic goals, using occupations as intervention tools, and client-centered practice (Nielsen & Christensen, 2018). These principles could also be used to promote overall well-being among cancer survivors. OTs possess skills in physical disabilities, mental health, and cognition that when used in combination, have shown to produce successful results (Nielsen & Christensen, 2018). Cancer is more commonly diagnosed in society today and with more advanced medical studies and current knowledge of the disease and its treatment, individuals diagnosed have been given a prolonged life (Adler & Page, 2008). Early detection, health and wellness and preventative health plays an important role in the oncology world. With the increased knowledge in early detection, five-year survival rates for those diagnosed with cancer has increased by upwards of 20%, supporting the need for education and advocacy within this area (Alder & Page, 2008). Through the needs assessment, 62% of families indicated that they were provided with enough medical information from the hospital care team necessary to prepare for the possible 19 deficits related to treatment recovery however, a lack of competence was reported when participants were asked what those specific deficits were. Competence was measured by the patients ability to correctly list at least 3 deficits related to the treatment (oncology treatment or BMT). Those who could not correctly list 3 deficits or responded something of this effect, relapse plus a lot more, were considered not competent. This is concerning as there is distinct differences in all categories and it is important that OTs help provide patients and their families with accurate education to prepare as necessary to decrease occupational deprivation. OTs Role at Brents Place With the stigma that exists regarding mental health, a gap currently exists surrounding the importance of mental health referrals and treatment among patients with a chronic disease (Adler & Page, 2008). General medical doctors may not refer to mental health services due to lack of training and knowledge in this area. Peer support groups were among the top requested services from cancer survivors that primary care physicians were unable to provide appropriate information for. OT's have the knowledge and ability to suggest and lead peer support groups within the community to meet the needs of this population (Adler & Page, 2008). The same concern was addressed in the collected results from the current needs assessment. In fact, when asked what family members were attending support groups, most of those indicated were caregivers. Interventions To address the needs identified by the past families of Brents Place, I created multiple resources to be provided to families at check-out. Along with the booklet of resources, I created a check out process to increase the consistency of care provided to each family leaving Brents Place. In order to logistically meet the indicated needs of the families, while also meeting 20 development goals of the staff members at Brents Place, the following check out process was established. Once a family has heard from their doctor that the patient will soon be discharged and released to return home, the family will schedule a time to meet with their family service staff member approximately one week prior to their departure. During this 15-20-minute meeting, families will complete their apartment cleaning check off as per protocol. Following the check, families will be given the opportunity to ask any last questions they have regarding the patients treatment or the transition home. Given that the meeting is to occur within the familys last week at Brents Place, this gives staff members the opportunity to reach out to the familys healthcare team or connect them to the resources needed for a successful transition. Each family will be given the following resources and Brents Place memorabilia which will serve as a physical reminder of the familys time in Aurora. Resource packets will include: a Venn diagram contrasting the late onset and long term effects of oncology treatment and bone marrow transplant (BMT) treatment, depending on the patients disease treatment; a list of Therapeutic Use of Activities which combines principles from OT, physical therapy, and music therapy to use everyday activities to promote the development of milestones and preserve important fine motor, gross motor, and emotional regulation skills; a list of helpful tips to help maintain a clean-safe environment at home; ways to stay connected to Brents Place, as many families expressed needs to continue participating in the established community but did not know how; instructions on how to reserve a hospitality suite, which acts as Brents Place shortterm living for past families returning to Aurora for check-up appointments as many families stated that this was reassuring to know that support was there if needed; how to sign up for a Brents Place mentor to further that relationship with another family who has already been 21 through a similar situation; tips on ways to deal with stress specifically related to oncology/illness treatment and what to expect emotionally with the transition home; a list of national and local social and emotional supports available; a list of social media and online resources were also provided. The staff member(s) present at this process would be available to point out important information and answer any follow-up questions. During this scheduled time, other staff members would also have the opportunity to come say goodbye. Lastly, the family will be given the opportunity to contribute to the Brents Place Families mural with their thumbprint and name. A model of the mural can be seen in Figure 2. Brents Place Families 2019 Aurora, CO Figure 2. Mural of past families at Brents Place. When leaving to return home, each family will be given the opportunity to add their thumbprint to the tree with their name. A new tree will be printed on canvas each year and available for display at Brents Place events. This opportunity also allows families the chance to leave their mark at Brents Place, a place many indicated feeling a strong physical connection to. Families will discuss with staff members when they plan to leave and will be given the option to have a send-off, which would include the opportunity to ring the noisemaker and have staff line the halls to cheer as the family left. 22 It was important that the staff be able to use this procedure for all families and situations leaving Brents Place. For example, adults and children would both enjoy contributing their thumbprint to the mural. Including the entire family also gives grieving families the opportunity to leave something behind in memory of their deceased child. When families who lose their loved one leave Brents Place, they will also be given optional resources on grief which were updated and organized for easy access for all staff members to distribute as needed. These resources include definitions and explanations of grief and its varying stages, how to help surviving siblings grieve, how to help fathers, mothers, and grandparents grieve, and how to cope with the holidays, etc. It was also indicated that families benefited from continued staff support once they left Brents Place. Therefore, it was decided that a follow-up letter would be sent to each family one month after their departure. The letter would act as a reminder that Brents Place was thinking about them and that staff were there for them if they ever wanted to talk or provide an update on the patients health. Student Leadership This site required extensive self-initiation skills to effectively run, maintain, and trial a new program. Staff members were extremely busy with their own work schedule and therefore, did not have extra time to guide any temporary team member such as myself as a capstone student, or other interns. Through this experience, I had to be my own leader in how I wanted to approach this project, what goals I wanted to accomplish, and how to present the information in a way that best fit the needs of the families. I feel as through my communication skills have improved in this process with the need to communicate to others the importance of OT as well as the significance of the program developed. 23 With use of my leadership skills, I was also able to complete a couple of smaller side projects that promoted the use of occupational therapy principles. For example, one item identified in the results from my needs assessment indicated the need for more caregiver support. Currently, there is only one program aimed to specifically address caregiver needs at Brents Place. To trial the need for caregiver support, an intern and I created a Respite Care Night. We provided childcare to patients and their siblings while their caregivers were given the opportunity to rest, clean, or make phone calls without interruption. Staff Development The staff members at Brents Place were engaged and willing to support this initiative to implement the use of a check out process because it aligned with one of the teams development goals. The team considered it an added bonus to have OT principles supporting the transition and showed interest in understanding the meaning behind the resources. For example, one of the staff members began pointing out OT skills related to fine motor control and core stability during interactions with the children living at Brents Place. The staff also developed in their understanding of the importance of follow-up care after a family returns home. Brents Place is well equipped with community/donor support, so they have the necessary resources available to offer help to families in their transition home. It has been noted by past families and the staff themselves, that some families are never heard from again, and the support offered at Brents Place goes dramatically from all to nothing. This is overwhelming to families and could lead to increased feelings of depression, anxiety, and stress, further supporting the significance of OTs involvement in the transition home. 24 Outcomes To ensure quality improvement of the check-out program that I created, it has been established that staff members will use the materials and process on a trial basis for at least one quarter. At biweekly meetings with the family services team, the staff can discuss how the program is working to meet their needs and the needs of the families. This way, small changes to the program can be made as needed. Prior to my departure, I completed an outcome measure for the staff to gauge their understanding of the program, how to use it, and the importance of OT at Brents Place. This let me know what changes I needed to make or suggest, to improve the program before leaving and what education I needed to provide for increased understanding. I also created a second outcome measure for the staff to utilize to measure the families understanding of the materials as well as how the resources specifically met their needs. I will not be present to implement the program and myself reach out to families and make the necessary changes. The questions to be included in each survey can be found in Figure 3 and Figure 4 below. 25 On a scale of 1-10, (1=not at all, 10=very) please rate the following statements regarding the implementation of the new check-out process 1 ------------------------------------------------------------------------------------------------------------------------- ----- 10 Not at all Very 1. 2. 3. 4. 5. How satisfied are you with the new check-out process? How confident are you that the check-out process will be successful? How confident do you feel implementing the process after MacKenzie leaves? How accurately does the process fit with current development goals? How confident do you feel that you have the skills necessary to make any changes to the program after MacKenzie leaves? 6. How confident do you feel in your understanding of how the check-out process aligns with OT principles? 7. How confident do you feel in your ability to explain the role that OT plays at Brents Place to others? Figure 3. Outcome measure for staff. This outcome was used to measure the usefulness of the check-out process ability to meet development goals of the Brents Place staff and families. The measure is also meant to analyze the understanding of carryover and understanding of OT at Brents Place. 26 On a scale of 1-10, (1=not at all, 10=very) please rate the following statements regarding the implementation of the new check-out process 1 ----------------------------------------------------------------------------------------------------------------------------- - 10 Not at all Very 1. How helpful were the provided resources in increasing your understanding of the national organizations available for support? 2. How helpful were the provided resources in increasing your understanding of the local organizations available for support? 3. How helpful were the provided resources in increasing your understanding of what to expect when returning home after treatment? 4. How helpful were the provided resources in increasing your understanding of how to decrease your stress related to recovery? 5. How helpful were the provided resources in increasing your understanding of the difference between the lateonset and long-term effects of treatment? 6. How helpful the provide resources were in decreasing your stress related to maintaining a clean-safe environment for your family? 7. How likely it is that you will use the resources provided? 8. Did the provided resources address your needs identified in the past survey? 9. Were the provided resources were easy to understand? 10. Were the provided resources were easy to access? 11. How important you think these topics are for recovery? Figure 4. Outcome measure for families. This outcome is to be used to measure the usefulness and understanding of the materials provided to Brents Place families at check-out. I also completed a GOAL Attainment Scale to measure how successful I was in completing the goals of my project and time at Brents Place. Below, Figure 5 lists the goals that I established during the beginning stages of my DCE. 27 -2 Much Less Than Expected -1 Less Than Expected 0 Most Likely Outcome +1 More Than Expected +2 Much More Than Expected Goal 1 I will present results of needs assessment regarding suggestions for Brents Place exit ceremonies. I will research/brainstorm exit ceremonies and suggest appropriate programs based off results of needs assessment. I will plan/set-up an exit ceremony to implement with all families leaving Brents Place for all situations, including satisfaction survey development to monitor success. I will run 1 exit ceremony for a family leaving Brents Place including presentation of What to Expect When Going Home packet and distribute satisfaction survey. I will run 2+ exit ceremonies for families leaving Brents Place with presentation of What to Expect When Going Home packet and take results from satisfaction surveys to suggest appropriate changes. Goal 2 I will present results of needs assessment regarding suggestions for helpful resources to provide families exiting Brents Place. I will research/brainstorm appropriate resources to suggest providing to families leaving Brents Place to ease the transition home based off results of needs assessment. I will create a What to Expect When Going Home packet to provide with families moving out of Brents Place to ease the transition home with useful local resources as indicated by results of needs assessment. Included will be a satisfaction survey to measure success of program. I will present the materials to Family Services team at Program Huddle to train staff how to use packet and implement use at family check out. I will take results from the satisfaction survey to make appropriate edits to improve success of program. Goal 3 I will share paper with team members to discuss importance of occupations in activities at Brents Place. I will brainstorm/research activities to incorporate into current programs at Brents Place and present to Family Service team at Program Huddle. I will incorporate occupations into current programs at Brents Place and make master list of suggested activities for Brents Place staff members to utilize. I will run 1 arts and crafts night with occupationbased activity. I will run 2+ arts and crafts or science nights with occupationbased activity. 28 Goal 4 I will discuss use of therapeutic activities in collaboration with PT and AT to promote discussion among staff members to include rehabilitation as part of team. I will create Use of Therapeutic Activities list to provide to families to utilize during stay at Brents Place to reduce occupational deprivation. I will create a Therapeutic Use of Activities list in collaboration with PT and AT to provide to families to utilize during stay to reduce occupational deprivation. I will present list to 1+ family at check in with Family Services Staff member to demonstrate appropriate use. I will create and send out needs assessment to current Brents Place families to measure need for onsite therapy clinic and provide appropriate suggestions. Figure 5. GOAL attainment scale. This scale measured my progress on the goals specific to my developed DCE program and time at Brents Place. I was able to meet all my established goals. I was not able to implement the program myself but was able to present the materials and complete a mock check-out to train staff members on my vision for using the materials with an occupational therapy perspective. As per my goal, I was able to create a resource packet for families to take home as part of the check-out process. The outcome measures described above were used to gauge the success of the programs and resources. I was able to surpass my goal of integrating occupational therapy principles into activities and programs at Brents Place by leading two craft nights integrating fine motor and sensory principles. I further created a Pinterest account where I have stored crafts, science activities, sensory activities, and gross motor activities or ideas to use during programs. Lastly, I was able to complete the Therapeutic Use of Activities list and have printed and bound copies distributed in every apartment. In addition, I collaborated with the music therapist to create a therapy room with sensory areas for the families to help decrease stress and anxiety. 29 Meeting Societys Need The societal need that I am addressing is the need to improve follow-up care for patients diagnosed with cancer and the lack of OT involvement in the current treatment plan. When undergoing treatment, patients are forced to isolate themselves to decrease the risk of exposure to germs while immune-compromised, increasing occupational deprivation (Connelly, 2015). In addition, research supports the growing population of those diagnosed with cancer (NRC, 2003), further supporting the need for more occupational therapy involvement in follow-up care. The need for rehabilitation is critical for this population. With these things in mind, along with the results of my needs assessment, I created a What to Expect When Going Home resource packet for families moving out of Brent's Place. Although this is a small group of those in the community affected by cancer, it will act as a good starting point for OTs involvement. I included the partnering hospital of Brents Place to offer collaboration efforts to provide a more holistic and comprehensive level of care for all members of the family. Included in my packet of resources is the discharge checklist provided to patients when getting ready to be discharged from the hospital. This will increase the ease of access to all support resources available to families. My hope is that in working with the hospital, they will be reminded of the importance of follow-up care and increase their efforts in supporting families who are discharged. Overall Learning and Leadership Overall, I feel that my professionalism has improved because of the multiple forms of communication I was required to use while at Brents Place. I had to initiate all projects, set my own goals, and reach out to Brents Place staff members and partners in order to effectively justify the use of my program. In all forms of communication, I tend to be wordy. This 30 experience taught me the importance of being concise and to the point to be respectful of each others busy schedules. I also improved in my ability to effectively explain what OT is when communicating with families and staff members who do not have an understanding of OT. Below are some specific examples of how I was able to improve my communication skills through interactions while at Brents Place. Most of my interactions with families took place when they came into the office to ask questions or with those who attended events and meal nights. One of the caregivers living at Brents Place is an active advocate for their child and has a lot of information and experience with support networks and the national organizations available to families. I used them as a resource to compile a list of supports available to other families dealing with their childs chronic condition to include in my programs resource packet. Professionally, I was also able to provide education to staff members and other professionals working at Brents Place through an in-service, leading team meetings/discussions, and reaching out to partners for advice and collaboration. I was also able to advocate for the role of OT in general and specifically at Brents Place in these same efforts by creating a program with integrated OT principles. In all my interactions I was sure to be polite and respectful of not only the other persons profession but also their time and knowledge. Professional communication for me includes good eye contact, open body language, and appropriate facial expressions. Even though I was not able to personally relate to the familys situation living at Brents Place, I was able to practice my use of empathy to form relationships and emotionally support them to practice my therapeutic use of self. I acknowledge that these skills will be useful in my future career as an OT. 31 In order to be successful at this placement, I had to self-initiate my learning which encouraged the development of my leadership skills. Through these efforts I gained leadership skills in setting realistic goals, collaborating with other professionals, working as a member of a team, communicating effectively, and advocating and educating others on my role as an OT in the team. This placement has helped me gain confidence in my abilities as an OT and although not performing direct OT services, the skills I listed above will indirectly serve in my success as a practitioner. 32 References Adler, N. E., & Page, A. E. (2008). Cancer care for the whole patient: Meeting psychosocial health needs. Washington, DC: National Academies Press. doi:https://doi.org/10.17226/11993 American Cancer Society. (2018). Key Statistics for Childhood Cancers. 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... Durable Medical Equipment, Adaptive Equipment, and Home Modifications: Decreasing Barriers in in the Home Health Setting Morgan Rhodes 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: Brenda Howard, DHSc, OTR MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING A Capstone Project Entitled Durable Medical Equipment, Adaptive Equipment, and Home Modifications: Decreasing Barriers in in the Home Health Setting 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 Morgan Rhodes OTD 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 1 MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 2 Abstract The purpose of this project was to create a resource for home health occupational and physical therapists with information on durable medical equipment (DME), adaptive equipment (AE), and home modification vendors in Indiana. A self-developed needs assessment survey was used to determine current practices and barriers therapists were encountering. The Doctoral Capstone Experience (DCE) student met with vendors, observed home health therapists and DME evaluations, and then created an online resource to provide information on vendors in their area, including what equipment they provide, payment sources, and the process of acquiring the equipment or services. The resource was presented to therapists and the interdisciplinary team with the goal of enabling therapists to lessen their workload while increasing the safety and independence of clients. A self-developed post-presentation survey was completed by those in attendance to determine effectiveness of the resource and highlight areas of possible improvement. Four themes emerged from the data: (a) therapists self-reported rating on a scale of 1-10 on knowledge of vendors in the community increased following the presentation of the online resource, as did satisfaction with that knowledge; (b) therapists overwhelmingly reported being very satisfied with the resource in terms of vendors included and types of equipment and modifications included; (c) therapists identified the potential positive impact this resource could have on streamlining the process of obtaining DME, AE, and home modifications; (d) additional barriers therapists commonly mentioned included a lack of information on insurance requirements as well as issues with their in-house DME provider. Keywords: durable medical equipment, adaptive equipment, home modifications, home health, occupational therapy, physical therapy, community resources MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 3 Literature Review Recently, the American Occupational Therapy Association (AOTA) called home modifications and aging in place an emerging niche for occupational therapy (OT) (AOTA, n.d.). The emergence of this area of practice is not surprising considering the recent statistics from the American Association of Retired Persons (2014), which states by the year 2030, one in five Americans will be aged 65 or older, with 87% of those individuals wanting to remain in their homes as they age. As practice in this setting has grown, research on OTs role in the home health setting has greatly increased as well. In a 2017 study conducted by McGregor et al., 84% of participants reported difficulty with one or more instrumental activities of daily living (IADL), while greater than 50% of participants reported requiring assistance with self-care tasks. These findings emphasize the need for skilled professionals to focus interventions on improving independence in occupational performance. Other disciplines within the home health care team also identify occupational performance deficits as having a major impact on their ability to care for clients. One certified nursing assistant in a 2014 study by Beer, McBride, Mitzner, and Rogers stated bathing to be the most time-consuming part of patient care due to not just bathing, but transfers involved as well. She further stated bathing a client could take up to two of her three-hour shifts (Beer et al., 2014). This further emphasizes the opportunity for OT to positively impact not only client functioning, but also effectiveness and efficiency within interdisciplinary care. Occupational therapists in the home health setting often utilize durable medical equipment (DME) and home modifications to prevent falls and increase safety and independence in occupational participation (Somerville, Smallfield, Stark, Seibert, Arbesman, and Lieberman 2016; Stark et al., 2018). Skilled therapists must consider a wide variety of factors to determine MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 4 which home modifications and DME to implement to best aid clients in improving occupational performance (Stark, Somerville, Keglovits Smason, & Bighman, 2015). Six experienced OT clinicians were interviewed regarding the clinical reasoning process of recommending and implementing DME and home modifications, and there were 16 intrinsic and extrinsic client factors and conditions therapists frequently considered (Stark et al., 2015). These 16 factors and conditions included: clinical course of the disease, personal assistance preferences, ability to maintain home modifications, readiness for change, compliance, concern for aesthetics, financial resources, physical assistance available, support system, lives with others, structural condition of the home, housing type, weather conditions, available space and layout, portability, and literacy level (Stark et al., 2015). In addition, Stark, Keglovits, Arbesman, and Lieberman (2017) suggested there are five aspects to successful and inclusive home modification intervention, including: assessment of the clients abilities, assessment of the clients home environment and goals, an intervention plan to eliminate or reduce barriers to occupational performance, implementation of the plan, and client/caregiver training. Researchers have found evidence supporting the use of home modifications and DME as interventions, due to their effectiveness in reducing falls in the home. Somerville et al. (2016) found home modification and DME interventions decreased the risk of falling in a single case study. Interventions included implementation of a shower chair, stair railing, increased lighting during the night, and removing clutter from pathways. Keall et al. (2014) studied the impact home modifications had on community dwellers compared to a control group in the Taranaki region of New Zealand over a four-year period. Researchers found injuries from of falls in the home reduced by 26% each year when exposed introduced to home modifications including but not limited to: hand rails for stairs, grab bars around the toilets, and non-slip bath mats (Keall et MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 5 al., 2014). In contrast to these findings, Stark, Keglovitis, and Somerville (2016) found implementation of customized home modifications decreased the risk of falls among high risk individuals for the first 260 days. However, after 260 days, the impact of home modifications on both falls prevention and performance in activities of daily living (ADLs) was not significant compared to the control group that did not receive home modification interventions (Stark, et al., 2016). Similarly, research has shown the effectiveness of DME and home modifications in increasing ADL and IADL participation within the home. Stark et al. (2018) sought to compare changes in occupational performance in ADLs by comparing 84 participants, half of which received home modification interventions and half which were in the control group. Results from the study showed significant positive changes in self-rated occupational performance and satisfaction with performance in ADLs after 12 months following home modification (Stark et al. 2018). Despite the evidence showing the effectiveness of DME and home modifications in improving safety and occupational performance, barriers prevented successful intervention from occurring. Factors influencing adherence to DME and home modification recommendations included responsibility of the client, type of DME and home modification, perception of effectiveness, as well as age and gender of the client (Cumming, Thomas, Szonyi, Frampton, Salkeld, & Clemson, 2001; Currin, Comans, Heathcote, & Haines, 2012; Russell, Taing, & Roy, 2017). According to the 2012 study by Currin et al., adherence to recommendations is less likely to occur when the individual is responsible for acquiring the equipment. Researchers found approximately 41% of home modification and DME recommendations were carried out when the MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 6 individual receiving services was responsible; however, 71% were carried out when the responsibility shifted to an outside agency (Currin et al., 2012). There was also an understanding of the positive impact of home modifications and DME in preventing falls among the population of community dwellers themselves, as seen by the 2017 research conducted by Russell et al. They found 90% of respondents during a phone questionnaire in the Ottawa, Canada area reported understanding that use of safety devices in the home could prevent falls. This understanding was lower among those who did not graduate high school or were age 85 and older (Russell et al., 2017). Cumming et al. (2001) found the perception of the effectiveness of DME and home modification intervention to have a significant impact on adherence to recommendations. During their randomized trial of falls prevention interventions in the homes of 178 participants, 21% of participants did not adhere to any recommendations (Cumming et al., 2001). Results from this study showed individuals who perceived DME and home modification to be effective in preventing falls were twice as likely to follow recommendations compared to those who did not perceive changes as being effective (Cumming et al, 2001). Findings from Currin et al. (2012) proved type of home modification or DME factored into adherence to recommendations. Results showed that after 6 months, at least 50% of grab bars at the shower and toilet, bed rails, stair rails, and bath mats were installed. However, toilet frames, shower chairs, changing floor surfaces, and removing clutter were the least likely recommendations to be followed (Currin et al., 2012). Researchers hypothesize this difference is to be due to the perception of disability associated with shower chairs and toilet frames, while rails are not perceived as making in individual appear to be disabled (Currin et al., 2012). MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 7 Age and gender were also found to influence adherence to DME and home modification recommendations (Russell et al., 2017). Individuals age 65-74 proved to be the least likely age group to implement DME and home modifications such as railings at staircases and rubber bath mats or non-slip surfaces in the bathtub (Russell et al., 2017). Researchers also found females to be more likely to use DME such as raised toilet seats and grab bars in the tub or shower (Russell et al., 2017). Purpose and Occupation-Based Model The purpose of this doctoral capstone experience (DCE), was to create a centralized resource for Community Home Health so all OT and physical therapy (PT) therapists have easy to use, readily available information on DME and home modification vendors within their area. This resource helped streamline DME, adaptive equipment (AE), and home modification interventions, by ensuring all therapists have one resource where they know they can find the necessary information to best aid their clients. The Person-Environment-OccupationPerformance (PEOP) model was the occupation-based model utilized to guide the project. There are four components of the PEOP: the person, which includes physiological, spiritual, psychological, neurobehavioral, and cognitive intrinsic factors of an individual; the environment, which is made of physical, societal or cultural extrinsic factors; occupations, which are the tasks and activities one does in their day; and performance, which involves actually doing the occupation (Christiansen, Baum, and Bass, 2011). For this DCE project, the person was the group of OTs or PTs working for Community Home Health; the environment was the home health setting; the occupation was work participation; the performance was actually carrying out OT services involving DME and home modifications. Since the resource was used to help therapists increase their efficiency and effectiveness in their job to improve the safety and MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 8 independence of their clients at home, all four of the PEOP components were impacted (Cole & Tufano, 2008). According to Cole and Tufano, the PEOP is suited for a variety of individual, group, and institutional needs across the lifespanThe domain of practice is predominately selected by the client, who is asked to identify the most important occupational performance issue (p. 127, 2008). This focus of the PEOP fits perfectly with the goal of this DCE project, as Community Home Health is an institution which has identified a problem within therapy performance regarding home modifications and DME. Within the PEOP model, dysfunction is defined as when a person cannot perform roles to a level of personal or social satisfaction, which is caused by deficits in abilities and skills due to a health condition, restrictive barriers, or lack of resources within the environment (Cole and Tufano, 2008, p. 130). Community Home Health administration has already identified a lack of resources of DME, AE, and home modifications prevents effective interventions from therapists, and based on initial reactions at meetings, therapists agree. Acknowledgement of barriers and lack of resources further supports why the PEOP model should continue to be the theory from which to view and plan the DCE project. The intervention process described through the PEOP model lens then guided how to decrease the barriers therapists expressed concern about in the needs assessment (Cole and Tufano, 2008). According to Cole and Tufano (2008), two of the intervention guidelines of the PEOP model include employing occupation-enabling resources that include assistive technology devices (built environment) that can modify ones physical environment, and promoting availability of economic supports, access to health care, and client rights (p. 131). These two guidelines aided in resource development, as information such as what equipment MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 9 vendors provide, payment sources, and the process of acquiring the equipment or services, was included to ensure therapists face less barriers in providing care. Screening and Evaluation Needs Assessment A needs assessment was completed to ensure the resource developed regarding DME, AE, and home modification vendors and resources throughout the community would be beneficial for therapists. With the PEOP as a theoretical guide for the project beginning, a topdown approach was used when therapists were asked to identify problems or barriers they are currently experiencing when recommending and implementing home modifications or DME (Christiansen, Baum, and Bass, 2011). This was done through a survey for OT and PT clinicians, given and returned during weekly regional team meetings. According to Stein, Rice, and Cutler, the main purpose of survey research is to obtain accurate objective descriptions about a specific universe of people or entities (2013, p. 130). The needs assessment for this project aligned with the purpose of survey research for examining needs and attitudes for planning services (Stein, Rice, & Cutler, 2013), as the goal of the needs assessment survey was to gather information from the therapists regarding their experiences in the home health setting. This was done to better understand the barriers and current practices regarding home modifications and DME and how to decrease those barriers through resource development. The survey was completed in the form of a self-developed 10 question questionnaire, which was returned by 22 therapists, a sample size of approximately 20% of all Community Home Health occupational and physical therapists (See Appendix A). The questionnaire is a commonly used instrument, often with the goal to generalize gathered information to larger populations (Stein et al., 2013). With 20% of therapists being available during meetings and MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 10 returning the questionnaires, the sample size was large enough for the site and researcher to feel the results could be generalized for the OT and PT population at Community Home Health. The population sampled was a purposive sample in that the questionnaire was given to Community Home Health Services OT and PT clinicians at the regional meetings (Stein et al., 2013). Questions were developed using the PEOP model as a guide to ensure aspects of the person, environment, occupation, and performance were included. The cognitive intrinsic factor of the person was included through self-rating questions regarding knowledge and satisfaction of knowledge on DME and home modification resources in the community (Christiansen et al., 2015). The environment in which the therapists work was included through questions regarding barriers experienced, as well as what they felt would decrease these barriers. The occupation of work participation was included through a question about the role of OT and PT in DME, AE, and home modification implementation, while performance was included through questions asking more specifically about what vendors and equipment or modifications they often recommend. A similar survey was given at the regional meetings following presentation of the resource as an outcome measure. Scores and responses from before and after the resource presentation were compared to determine its impact and effectiveness. Needs Assessment Results The data from the needs assessment questionnaires were analyzed using open coding and organized into themes (Johnson & Christensen, 2014). Through the results of the needs assessment questionnaire regarding DME, AE, and home modifications, four major themes emerged from the answers provided by OT and PT clinicians: (a) The role of OT and PT in DME and home modification intervention is to identify need, educate the client and family, and initiate contact between the client, doctor, and vendor; (b) The knowledge and satisfaction with MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 11 knowledge of DME and home modification resources in the community are widely differing among therapists; (c) Certain DME and home modifications are more commonly recommended by therapists; (d) Client finances and vendor timeliness are the most common barriers to providing effective and efficient services. To begin, the first theme identified through the needs assessment was the role of OT and PT in DME and home modification intervention is to identify need, educate the client and family on recommendations and use of DME, and initiate contact between the client, doctor, and vendor. One therapist responded that their role was to make not only the recommendations, but also to help patients obtain them, provide resources, options, and also placement of the items in the home (Lines 38-39). Another stated that she is the first contact of information for most patients; [an] important first step in getting the ball rolling for their needs as well as for safety (Lines 34-35). Consistent with these answers, Stark et al. (2018) described the role of OT in home modification intervention to consist of an assessment of clients home and abilities, identification of occupational problems and environmental barriers, collaboration with client and family to determine goals and selection of equipment or modifications, and practice with the client on use of new equipment or modifications. While research shows the role of OT within identifying, recommending, educating, and training in the use of equipment and home modifications, there is a lack of research on the communication involved. The lack of research on the process of communication between the client, therapist, doctor, and vendor further demonstrates the need for education and resources to aid therapists in guiding this process and communication between all parties involved. The second theme that emerged from the needs assessment was the knowledge and satisfaction with knowledge of DME, AE, and home modification resources within the MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 12 community are widely differing among therapists. When asked to self-rate their knowledge of DME, AE, and home modification resources in the community from one to 10, with one being the lowest and 10 the highest, responses ranged from two to nine. When asked to self-rate their satisfaction with their knowledge, responses ranged from one to 10. Varying competence is not limited to this home health agency, as research by DuBroc and Davel Pickens (2015) found therapists with at least two years of clinical experience ranged from advanced beginner to expert when recommending and implementing DME and home modifications. These responses show an inconsistency in knowledge and satisfaction regarding equipment and home modification resources among OT and PT clinicians in this home health setting, further demonstrating the need for additional available resources to decrease this difference. Thirdly, certain DME and home modifications are more commonly recommended by therapists. The most commonly recommended equipment and home modifications by the therapists who participated in the survey were the use of grab bars, bathroom equipment including tub transfer benches and shower chairs, and use of mobility devices including walkers, rollators, manual wheelchairs, and power wheelchairs. Grab bars were mentioned in 15 surveys, bathroom equipment in 10, and mobility devices in 13 of the 22 surveys turned in by practicing OT and PT clinicians. The equipment and modifications recommended most are consistent with the 2012 study by Currin et al., who found grab bars, specifically in the shower, were the most commonly recommended modification, with shower chairs and tub transfer benches as the second most common. Both the results from the needs assessment and study by Currin et al. (2015) demonstrate the need for the resource being developed to include information of how to obtain certain DME, AE, and modification services, especially those involving grabs bars, the bathroom environment, and mobility devices. MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 13 The fourth theme that emerged from the needs assessment was that client finances and vendor timeliness are the most common barriers to providing effective and efficient services. When asked about barriers to providing effective treatment, one therapist wrote, Cost of equipment or modifications as most patients I see are on fixed incomes (Line 195). Another therapist commented that she struggles with timely approval and delivery of equipment; I currently spend much time checking up on statuses and find many instances of lost paperwork or faxes not received (Lines 202-204). These factors are directly and negatively impacting the therapists performance in work participation, as well as impacting the client's ability to be safe and independent in the home during desired occupations. This is consistent with the 2015 study by Stark et al., which found financial resources of the client to be an extrinsic factor therapists should always consider when recommending equipment and modifications. Stark et al. further stated that a therapist should always consider the clients realistic ability to implement recommendations due to finances, as recommending equipment and modifications outside of the clients means could damage any rapport previously built (2015). Considering this information, the resource developed for therapists had a variety of equipment and modifications with varying prices, and prices were listed within the resource when vendors were willing to provide that information. Comparison to Additional Area of Practice Therapists perception of the environment in which they work and its impact on intervention has been studied outside of the home health setting. In 2015, Skubik-Peplaski, Howell, Hunter, and Harrison studied occupational therapists in an inpatient stroke rehabilitation unit to determine their perceptions of the work environment and how that influences their practice. Focus groups and interviews were conducted with the therapists (Skubik-Peplaski et al, MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 14 2015). While the methodology was different than that used in the DCE project, the goal of better understanding the individual therapists viewpoint and current practice habits in relation to their environment was similar (Skubik-Peplaski et al, 2015). Similar to the results of the needs assessment surveys, themes arose from the interviews and focus groups (Skubik-Peplaski et al, 2015). Skubik-Peplaski et al stated, Three themes emerged that revealed therapists habits influenced their clinical reasoning; the environment influenced intervention choices; and therapists felt safer treating in the gym environment (2015 p. 250). The first two themes related to answers found in the needs assessment of the DCE, as home health therapists also wrote about how familiarity with vendors and resources available within their work environment influence their practice. Both the DCE project in the home health setting and the study conducted in the inpatient stroke rehabilitation unit sought to find how the environment, including resources available, in which therapists worked influenced their practice and interventions (SkubikPeplaski et al, 2015). These findings could then be used to improve the work environment, allowing therapists in both settings to provide more efficient and effective care. Implementation Resource Development Implementation of the DCE project following the needs assessment involved four main components: meeting with DME, AE, and home modification vendors, observing home health OT and PT clinicians during DME evaluation sessions, creating the centralized resource, and presenting the resource to Community Home Health staff. Beginning the second week of the capstone experience, meetings with vendors were scheduled by the DCE student through phone and email contact. Meetings with individual representatives from vendor companies were either conducted in-person or over the phone, depending on representative availability. Questions for MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 15 vendors (See Appendix B) were created after gaining an understanding of the needs assessment results, and were approved by the DCE site mentor. The questions were used to guide the meeting conversation and ensure relevant information was gathered regarding payment sources, order process and timeline, delivery methods, and communication methods for each vendor. Throughout the first eight weeks of the capstone experience, the DCE student observed home health therapists during DME evaluation sessions to gain further insight into barriers home health therapists face regarding equipment and home modifications, the process of obtaining the services, as well as the documentation required to ensure insurance coverage. Six OT and PT clinicians provided the DCE student with the opportunity to observe a total of 16 sessions as well as review patients charts to understand the necessary components of evaluation documentation. Observing these sessions also allowed the DCE student to network and build rapport with vendor representatives and discover additional community resources to include in the online, centralized DME, AE, and home modification resource. The resource took approximately three weeks to create, with additional vendors added and changes made following feedback from therapists and managers after the tool was presented. The resource was created using Google Sheets and Google Docs, designed to be easy to use and access, as all therapists were able to view the resource with internet access. The Google Sheet was organized with five tabs: Introduction, DME, AE, Home Modifications, and Vendors. The DME, AE, and Home Modifications tabs were further organized by piece of equipment or service, including information about the vendors that provide them, if the vendors accept insurance, and approximate before-insurance pricing. The Introduction tab provided instructions on how to navigate the resource, while the Vendor tab provided a full list of vendors with additional information about if the vendor accepts insurance and contact numbers. Each time a MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 16 vendor was listed, the company name was a link connecting the therapists to a vendor-specific Google Docs page, with information regarding payment sources, order process and timeline, delivery methods, and preferred communication methods for each vendor that was gathered during meetings. Presentation of the resource took place at five different meetings: one all-therapy meeting for OT and PT clinicians, and four regional team meetings for OT, PT, SLP, and nursing disciplines. The DCE student explained the purpose of the DCE project and instructed the staff on how to access and navigate the resource. Case study examples were also included so the DCE student could demonstrate how to use the resource in multiple practical scenarios. At these presentations, post-presentation surveys (See Appendix C) were passed out to be completed by each staff member to provide feedback on satisfaction with, and effectiveness, of the resource. Questions from the needs assessment regarding current knowledge of DME, AE, and home modification resources, satisfaction with current knowledge, and ideas on additional barriers were used again for comparison, while questions regarding satisfaction with the resource and recommendations for improvement were added. Staff Development and Leadership By increasing therapists knowledge of available DME, AE, and home modification services throughout the community, the centralized resource and presentation directly resulted in staff development. Providing this information better enabled therapists to aid their clients by easing their workload while increasing the safety, independence, and quality of life of clients. As evidenced by the needs assessment results, therapists knowledge and satisfaction of knowledge on available services varied greatly. Through implementation of this resource, Community management and the DCE student sought to decrease this variance by increasing MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 17 overall knowledge. The resource will be updated by staff after the DCE student leaves and will also be immediately available for new hires, so that professional development will continue for all current and future therapists. Leadership is a process of creating structural change wherein the values, vision, and ethics of individuals are integrated into the culture and community as a means of achieving sustainable change (Braveman, 2016, p. 4). The idea of creating a positive, sustainable change to better allow therapists to carry out Communitys vision and mission was the overall goal of the resource. Taking on a project of this magnitude was an example of leadership in itself, as many therapists and managers had attempted to independently create a resource without success. However, to complete the project, the DCE student demonstrated multiple traits of an effective leader, including initiative, persistence, sociability, and self-confidence (Braveman, 2016). The DCE student demonstrated initiative and persistence while scheduling and meeting with vendor representatives and acquiring vendor information. These skills were necessary when contacting vendors, particularly when vendors did not immediately return calls. Without initiative and persistence, the resource created would have been much less comprehensive, with fewer vendors included. Next, the DCE student demonstrated sociability when interacting with vendor representative and therapists, ensuring all were comfortable with participating in the capstone experience and ultimately contributing to the resource. Being able to connect with vendor representatives in a positive manner resulted in these individuals being more willing to provide additional information, including management contact information and equipment ordering forms. Lastly, self-confidence was crucial during the presentation of the resource to staff. By reviewing the resource multiple times, creating a variety of scenarios, using the resource to walk through the scenarios, and rehearsing the presentation, the DCE student was MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 18 prepared for not only the presentation itself, but also the questions and concerns following the presentation. Ultimately, by exhibiting these traits associated with an effective leader, the DCE student was able to successfully create and present a centralized resource to increase the effectiveness and efficiency of DME, AE, and home modifications interventions implemented by OT and PT clinicians at Community Home Health Services. Outcomes and Discontinuation Outcomes Following the large all-therapy and regional team meetings during which the online resource was presented, surveys were completed by those in attendance. The survey was in a similar format to the needs assessment, but this time with seven self-developed questions. In addition to OT and PT clinicians, nurses, speech language pathologists, and social workers attended the regional team meetings. All were asked to fill out the survey to provide the DCE student and site mentor with as much feedback as possible; however, only surveys completed by OT and PT clinicians were used for comparison to the results of the needs assessment. Surveys were returned by 37 OTs and PTs, a sample size of approximately 35% of all Community Home Health OTs and PTs. Similar to the needs assessment, the sample size was large enough for the site mentor and DCE student to conclude the results could be generalized for the OT and PT population at Community Home Health Services. As done previously, the results of these surveys were organized into themes after being analyzed using open coding (Johnson & Christensen, 2014). Four themes emerged from the data: (a) therapists self-reported rating on a scale of 1-10 on knowledge of DME, AE, and home modification vendors in the community, as well as satisfaction with that knowledge, increased following the presentation of the online resource; (b) therapists overwhelmingly reported being very satisfied with the resource in MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 19 terms of vendors included and types of equipment and modifications included; (c) therapists value and identify the potential positive impact this resource can have on streamlining the process of obtaining DME, AE, and home modifications; (d) additional barriers therapists commonly mentioned included a lack of information on insurance requirements as well as issues with Communitys in-house DME provider. The first theme identified through the post-presentation survey results was therapists self-reported rating on a scale of 1-10 on knowledge of DME, AE, and home modification vendors in the community, as well as satisfaction with that knowledge, increased following the presentation of the online resource. Two questions, On a scale of 1-10 (1 being the lowest and 10 being the highest) how would you rate your current knowledge regarding available home modification, AE, and DME resources, and On a scale of 1-10 (1 being the lowest and 10 being the highest) how satisfied are you with the above answer were used in both surveys to allow for direct comparison. The average rating on the knowledge of home modification, AE, and DME resources increased from a 6 at the needs assessment to an 8.15 at after the presentation, while satisfaction with knowledge increased from a 5.5 at the Needs Assessment to an 8.88 after the presentation. These changes in self-rated scores showed a significant positive impact, demonstrating the effectiveness of the resource and presentation. Next, the second theme identified was that therapists overwhelmingly reported being very satisfied with the resource in terms of vendors included and types of equipment and modifications included. All but one therapist stated they were very satisfied with the resource, with comments such as Awesome and This is great and will be a useful tool included. The one therapist did not rate her satisfaction, but instead wrote of her concerns, saying, I tried several different ways to pull the resource up and was unable, and I am far from tech savvy so MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 20 I would need to be able to access the information easily. These comments and concerns, which were provided after the first presentation at the all-therapy meeting, were taken seriously and adjustments were made for the following presentations. Instructions for how to open the resource, as well as how to save the resource as a favorite on the desktop, were sent to all therapists and managers by the site mentor. At the following presentations, both the DCE student and site mentor circulated the room and assisted therapists in navigating the resource when asked. Thirdly, the next theme identified was that therapists value and identify the potential positive impact this resource can have on streamlining the process of obtaining DME, AE, and home modifications. Many positive comments were shared when asked how this resource will benefit the therapists and their clients in the future. One therapist wrote that they will now be able to access information easier and understand [insurance] coverage. Another stated the resource allows for a streamlined resource list, enhanced time management, [and] improved patient and caregiver education. The final theme identified was additional barriers therapists commonly mentioned included a lack of information on insurance requirements as well as issues with Communitys inhouse DME provider. Questions about additional perceived barriers to care were included in both the needs assessment and post-presentation survey to better understand areas in which Community Home Health Services could continue to improve. Understanding insurance coverage of equipment was stated multiple times following the first presentation, so at the following meetings an emphasis was placed on showing staff a Medicare screening and guideline reference, so that they could search for a piece of equipment and immediately find the Medicare requirements for the equipment to be covered under Medicare part B. While this does not MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 21 answer all questions about insurance coverage, the hope was that the reference could help with many questions considering the majority of Community Home Health Services patients are insured through Medicare. Concerns and frustrations with Community Home Medical Equipment, Community Health Networks in-house DME supplier, were also voiced, leading to the DCE students opinion that additional communication between the vendor and therapists should be initiated or even another DCE student could focus a project on enhancing communication and effectiveness of the vendor. Discontinuation By providing Community Home Health Services and its therapists with a centralized resource including information on DME, AE, and home modification vendors in the area, along with additional resources regarding Medicare and Medicaid coverage, the basics of mobility devices, and documentation requirements for orders, this DCE project has directly met the organizations needs. The organizations management identified it was struggling to meet the needs of its patients, as 87% of individuals over the age of 65 wanting to remain in their homes as they age (American Association of Retired Persons, 2014). With more and more older adults wishing to stay in the home, there was an increased need to modify the home environment to prevent falls, increase independence, and maintain overall safety for those older adults. However, with insufficient and inconsistent information provided to therapists on how to best recommend equipment and modifications to patients, implementation of these modifications or equipment was being delayed or not occurring. Increased knowledge and satisfaction with the resource as seen through the post-presentation surveys demonstrated the effectiveness of the resource and the positive impact having this information had as therapists are able to more effectively and efficiently ensure the safety and independence of their patients. MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 22 To ensure the positive impact on Community Home Health Services need for a centralized resource on DME, AE, and home modification vendors in Central Indiana, a discontinuation plan was put in place. To ensure sustainability, the resource was made in an electronic format that will always be available to therapists as long as they have the link, which was provided to them via email and was placed on their shared documents drive. Management requested a view-only format, so that changes could not accidentally be made. The site mentor as well as another therapy team manager were made contributors to the resource, so that they may make changes in the future or add additional contributors to update the resource. The DCE student and therapy managers had talked about how updating the resource would be good miniprojects for students, especially level 2 fieldwork students. A student would potentially contact a couple of vendors during their fieldwork to verify information was still current and make changes as needed. This way, students could gain experience in networking with community vendors as well as DME, AE, and home modifications, all while Community Home Health gets to maintain an updated resource. Overall Learning Goal Completion Throughout the DCE, there were five goals with corresponding objectives the DCE student sought to obtain. To successfully complete these five goals, effective communication by verbal, nonverbal, and written means with managers, clinicians, and vendor representatives was crucial. The first goal was to determine the role of OT in finding and providing DME, AE, and resources for home modifications. This was done through searching current evidence-based literature for OTs role in implementing DME, AE, and home modifications into treatment plans, as well as using survey questionnaires as a means of completing the needs assessment. MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 23 Literature allowed for understanding of the role of OT in this setting nationally and internationally, while the surveys allowed for understanding of the role of OT and PT within this specific home health agency. The second goal was to develop a tool for current therapists regarding resources in the community that provide DME, AE, and home modifications. This was completed by exploring the resources Community Home Health Services had when the project began to determine what was beneficial and what could be enhanced. Through verbal and electronic communication with managers and therapists, it was determined that only a small sheet with less than five equipment vendors existed at that time, so information on additional vendors in an easy to access format was needed. The next goal for the DCE project was to increase interdisciplinary understanding of OTs role in DME and AE use and home modifications. This was done by the DCE student observing home modification focused and DME evaluation sessions with Community Home Health therapists. This allowed the DCE student to increase her own understanding of OTs role so she could better explain this role to other disciplines. This goal was further achieved by providing additional presentations of the resource so all disciplines involved in home care, including nursing, social work, and speech language pathology could have visual and verbal instruction. The fourth goal for the DCE project was to present the DME, AE, and home modification resource to current OT and PT clinicians during an in-service session. To gain an understanding of how meeting sessions occurred, the DCE student attended multiple therapy meetings and observed how information was commonly presented. The resource was ultimately presented at an all-therapy meeting where the student provided information on her project purpose and MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 24 demonstrated how to navigate the resource. Questions were answered throughout the session and the DCE student and site mentor provided assistance as appropriate. Lastly, the final goal of the project was to determine additional barriers impacting therapist job performance, including possible suggestions for improvement. This was competed through the Needs Assessment and post-presentation questionnaires. Written communication from the surveys showed frustration with Community Health Networks inhouse DME supply as well as understanding insurance requirements. Suggestions for improvement including additional DCE students in the future were provided to the site mentor. Leadership and Advocacy As stated previously, the DCE student demonstrated multiple traits of an effective leader, including initiative, persistence, sociability, and self-confidence throughout the DCE (Braveman, 2016). Demonstrating these traits while meeting with vendor representatives, therapists, and those in management allowed for effective and professional written, oral, and nonverbal interactions, ultimately resulting in completion of the resource. Despite successful interactions, advocacy during the DCE was crucial when meeting with vendors as well as clinicians. The DCE student advocated for the online resource when reaching out to vendors, including when some criticized or questioned its necessity. For example, a few vendor representatives questioned why Community Home Health therapists would want information from vendors other than Community Health Networks inhouse DME provider. Another vendor questioned the DCE students understanding of DME and her qualifications to be completing the project. However, the DCE student was able to verbally advocate for herself, the project, as well as the therapists and clients of Community Home Health Services. The DCE student explained her qualifications, including the completion of two Level 2 fieldworks prior to beginning her DCE. The DCE MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 25 student also advocated for the necessity of the project in order to ensure therapists, and more importantly, clients would be able to receive crucial information on area vendors, providing them with the freedom to choose who they would work with. Ultimately, vendor representatives understood the necessity for therapists to have information regarding insurances accepted, average timelines, and the process of working with their company so patients can receive the most client-centered care possible. Conclusion As a result of this DCE project, Community Home Health Services OT and PT clinicians now have a centralized, online resource which provides information on available DME, AE, and home modification vendors throughout central Indiana. The DCE student successfully completed all of her goals for the project as well as gained valuable leadership, advocacy, and other professional skills. After comparing the results of the needs assessment and postpresentation surveys as well as after receiving verbal feedback during presentation sessions, it was determined by the DCE student and site mentor that the resource had a significant positive impact by decreasing the workload of therapists while being used to increase the safety and independence of patients. The resource will be continued through editing from two managers and possibly from future fieldwork students when the managers deem appropriate. All home health agencies should carefully consider the barriers clinicians face regarding implementation of DME, AE, and home modification interventions as well as the potential impact of providing clinicians with resources on available services in their communities. MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 26 References American Association of Retired Persons. (2014). Baby Boomer Facts and Figures. Retrieved from https://www.aarp.org/livable-communities/info-2014/livable-communities-factsand-figures.html American Occupational Therapy Association. (n.d). Aging in place and home modifications. Retrieved from https://www.aota.org/en/Practice/ProductiveAging/EmergingNiche/Home-Mod.aspx Beer, J. M., McBride, S. E., Mitzner, T. L., Rogers, W. A. (2014). Understanding challenges in the front lines of home health care: a human-systems approach. Applied Ergonomics, 45(6), 1687-1699. Braveman, B. (2016) Leading & managing occupational therapy services: An evidence-based approach (2nd ed.). Philadelphia, PA: F.A. Davis Company Christiansen, C., Baum, C. & Bass, J. (2011). The Person-Environment-Occupational Performance (PEOP) model. In E. Duncan (Ed.), Foundations for practice in occupational therapy (5th ed., pp. 93-104). Edinburgh, Scotland: Churchill Livingstone Elsevier. DuBroc, W., & Davel Pickens, N. (2015). Becoming At home in home modifications: Professional reasoning across the expertise continuum. Occupational Therapy In Health Care, 29(3), 316-329. Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: a practical approach. Thorofare, N.J.: SLACK Inc. MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 27 Cumming, R. G., Thomas, M., Szonyi, G., Frampton, G., Salkeld, G., & Clemson, L. (2001). Adherence to occupational therapist recommendations for home modifications for falls prevention. American Journal of Occupational Therapy, 55(6), 641-648. Currin, M. L., Comans, T. A., Heathcote, K., & Haines, T. P. (2012). Staying safe at home. Home environmental audit recommendations and uptake in an older population at high risk of falling. Australasian Journal on Ageing, 31(2), 90-95. Johnson, R. B., & Christensen, L. (2014). Phenomenology, ethnography, and grounded theory. Educational research: Quantitative, qualitative, and mixed approaches (5th ed.). (pp. 460-461). Keall, M. D., Pierse, N., Howden-Chapman, P., Cunningham, C., Cunningham, M., Guria, J., & Baker, M. G. (2014). Home modifications to reduce injuries from falls in the home injury prevention intervention (HIPI) study: a cluster-randomized controlled trial. The Lancet, 385, 231-238. McGregor, M. J., Slater, J., Sloan, J., McGrail, K. M., Martin-Matthews, A., Berg, S., Plecash, A., Sloss, L., Trimble, J., & Murphy, J. M. (2017). Hows Your Health at Home: Frail Homebound Patients Reported Health Experience and Outcomes. Canadian Journal on Aging, 36(3), 273-285. Russell, K., Taing, D., & Roy, J. (2017). Measurement of Fall Prevention Awareness and Behaviours among Older Adults at Home. Canadian Journal on Aging, 36(4), 522535. Shubik-Peplaski, C., Howell, D.M., Hunter, E. G., & Harrison, A. (2015). Occupational therapists perceptions of environmental influences on practice at an inpatient stroke rehabilitation program: a pilot study. Physical and Occupational Therapy in Geriatrics, 33(3), 250-262. MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 28 Somerville, E., Smallfield, S., Stark, S., Seibert, C., Arbesman, M., & Lieberman, D. (2016). Occupational therapy home modification assessment and intervention. American Journal of Occupational Therapy, 70(5), 7005395010p1-7005395010p3. 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), 7102290010p17102290010p11. Stark, S., Keglovits, M., Somerville, E. (2016). A randomized controlled feasibility trial of tailored home modifications to improve activities of daily living. American Journal of Occupational Therapy, 70(4), 1. Stark, S., Somerville, E., Conte, J., Keglovits, M., Hu, Y. L., Carpenter, C., ... & Yan, Y. (2018). Feasibility trial of tailored home modifications: process outcomes. American Journal of Occupational Therapy, 72(1), 7201205020p1-7201205020p10. 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(2), 6902290030p1-6902290030p8. Stein, F., Rice, M. S., & Cutler, S. K. (2013). Clinical research in occupational therapy. (5th ed. pp. 307-406). Clifton Park, NJ: DELMAR Cengage Learning MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 29 Appendix A Needs Assessment Questionnaire: Home Modifications and Durable Medical Equipment in the Home Health Setting: Decreasing Barriers in Providing Effective and Efficient Interdisciplinary Care Name_______________________________ Discipline ___________________________ 1. On a scale of 1-10 (1 being the lowest and 10 being the highest) how would you rate your current knowledge regarding available home modification and durable medical equipment resources in the community? 2. On a scale of 1-10 (1 being the lowest and 10 being the highest) how satisfied are you with the above answer? 3. What do you feel your role is in situations involving DME or home modifications and how does that differ from other disciplines? 4. What DME and home modifications do you most commonly implement with clients? a. DME: b. Home modifications: 5. Which companies do you most commonly use for: a. DME: b. Home modifications: 6. What information regarding DME, home modifications, and vendors would you like to learn more about? 7. What do you feel are barriers to providing effective treatment for patients requiring DME or modifications to the home? 8. How would you decrease the negative impacts of these barriers? 9.What additional barriers (not related to DME/home modifications) do you encounter that prevent you from providing the most beneficial client-centered care? 10. How would you decrease the negative impacts of these barriers? MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 30 Appendix B DME/ Home Modifications Vendor Questions: Home Modifications and Durable Medical Equipment in the Home Health Setting: Decreasing Barriers in Providing Effective and Efficient Interdisciplinary Care 1. 2. 3. 4. Are you enrolled and participating in Medicare? What other insurance/ payment sources do you take? What areas/regions of the state do you cover? Describe the overall process from the beginning: ordering through delivery a. What steps do the therapists/ clients take? b. How does one order online, come into store, home visits, etc. 5. How do you communicate where you are in the process with clients, therapists, etc? 6. How does delivery occur? a. Certain days b. Certain areas c. Certain equipment of size of order necessary 7. What is the average timeline to complete orders? 8. How has the end of competitive bidding impacted you? a. Offer any incentives or discounts? b. What do you have to offer that is different than other vendors? 9. List of relevant DME and pricing a. Hospital beds b. Walkers standard, rolling, rollator c. Wheelchair d. Power wheelchair e. Canes single point and quad f. Wheelchair cushions g. Lift chairs h. Bed rails i. Toilet safety frame j. Raised toilet seat k. Shower chairs l. Tub transfer bench m. Grab bars n. Hand held shower heads o. Bedside commodes 10. What are the criteria/insurance justification parameters for these pieces of equipment? 11. What challenges or barriers do you face that clients/therapists should understand? 12. Vendor contact info for a specific person to talk to if there are issues MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 31 Home Modifications Vendor Questions: Home Modifications and Durable Medical Equipment in the Home Health Setting: Decreasing Barriers in Providing Effective and Efficient Interdisciplinary Care 1. Describe the overall process from the beginning: ordering through delivery a. What steps do the therapists/ clients take? b. How does one order online, come into store, home visits, etc. 2. What areas/regions of the state do you cover? 3. What is the average timeline to complete orders? 4. How do you communicate where you are in the process with clients, therapists, etc? 5. Are there any payment sources other than out of pocket that you accept? 6. Do you allow payment/financing plans? 7. What do you have to offer that is different than other vendors? 8. List of relevant services and prices understand will be different from home to home a. Home assessment b. Stair lifts c. Roll in shower d. Walk in tub e. Grab bars f. Hand held shower head g. W/C ramp h. W/C lift i. Patient lifts i. Single rail ii. Traverse rail iii. Room to room iv. Free standing hoist 9. If there needed to be repairs, how does that work? Is anything under warranty, are there fees, or is it just totally dependent on the situation? 10. What challenges or barriers do you face that clients/therapists should understand? 11. Vendor contact info for a specific person to talk to if there are issues MODIFICATIONS AND EQUIPMENT IN THE HOME HEALTH SETTING 32 Appendix C Post-Presentation Questionnaire: Durable Medical Equipment, Adaptive Equipment, and Home Modifications in the Home Health Setting: Decreasing Barriers in Providing Effective and Efficient Interdisciplinary Care Name_______________________________ Discipline ___________________________ 1. On a scale of 1-10 (1 being the lowest and 10 being the highest) how would you rate your current knowledge regarding available home modification, AE, and DME resources after this presentation? 2. On a scale of 1-10 (1 being the lowest and 10 being the highest) how satisfied are you with the above answer? 3. How satisfied were you with the information provided in this resource in terms of vendors and the process of working with them? 1. Very satisfied 2. Satisfied, but improvements needed 3. Not satisfied How could this be improved? _______________________________________________ 4. How satisfied were you with the information provided in this resource in terms of types of equipment and home modifications? 1. 2. 3. Very satisfied Satisfied, but improvements needed Not satisfied How could this be improved? _______________________________________________ 5. How do you think this resource will benefit you and your patients in the future? 6. What additional barriers (not related to DME/AE/home modifications) do you encounter that prevent you from providing the most beneficial client-centered care? 7. How could Community decrease the negative impacts of these barriers?  ...

... Running head: INTERVENTIONS FOR CANCER SURVIVORS 1 Interventions for Cancer Survivors in Occupational Therapy: A National Survey Katie M. Polo, Kelsey R. Badger, Meghan L. Harkness, Addie L. Jacobs, Jennifer E. Lynn, and Elizabeth A. Mathews 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: Katie M. Polo, DHS, OTR, CLT-LANA INTERVENTIONS FOR CANCER SURVIVORS 2 A Research Project Entitled Interventions for Cancer Survivors in Occupational Therapy: A National Survey 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 Katie M. Polo, DHS, OTR, CLT-LANA, Kelsey R. Badger, OTS, Meghan L. Harkness, OTS, Addie L. Jacobs, OTS, Jennifer E. Lynn, OTS, and Elizabeth A. Mathews, OTS Approved by: Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTR Chair, School of Occupational Therapy Date INTERVENTIONS FOR CANCER SURVIVORS Abstract This study aims to describe how occupational therapy (OT) practitioners are addressing side effects and occupational performance deficits of cancer survivors in order to analyze current practice trends. Survey methodology with non-probability purposive sampling was used to recruit OT practitioners that work with adult cancer survivors. A total of 267 surveys were distributed and 70 surveys returned (26.20% response rate). Participants reported treating the following side effects of cancer: fatigue (98.57%), pain (84.29%), cognitive impairments (80.0%), and neuropathy (78.57%), more frequently than psychosocial (68.57%), lymphedema (50.0%), and sexual dysfunction (20.29%). Practitioners indicated addressing occupational performance deficits in basic activities of daily living (BADLs) more often than instrumental activities of daily living (IADLs). A low referral rate to OT services was found from primary care physicians. Respondents reported treating survivors most frequently in the acute care setting. Increasing education to cancer survivors and healthcare professionals is imperative to ensure that survivors receive access to holistic and quality OT services across the continuum of care. 3 INTERVENTIONS FOR CANCER SURVIVORS 4 Interventions for Cancer Survivors in Occupational Therapy: A National Survey There were approximately 15.5 million cancer survivors in 2016 within the United States, and that number is expected to increase to 20.3 million by 2026 (National Cancer Institute, 2018). An individual is considered to be a cancer survivor from the moment of diagnosis until the end of life (National Cancer Institute, 2014b). While the prevalence and incidence of cancer continues to increase, the number of cancer related deaths have dramatically lowered in the past 10 years due to more effective diagnosis and treatment (National Cancer Institute, 2014a). Approximately two in three adults diagnosed with cancer are expected to survive more than five years (National Cancer Institute, 2012); therefore, there are more survivors today than previous decades. While cancer treatment is vital, the side effects associated with treatment decrease survivors overall quality of life and keep them from fully participating in valued occupations (Hwang, Lokietz, Lozano, & Parke, 2015). These side effects that arise both from cancer and its medical treatment will likely impact a persons ability to participate in activities of daily living (ADLs), instrumental activities of daily living (IADLs), social participation, work, and education (Berg & Hayashi, 2013). Some of these side effects include, cognitive impairments, fatigue, psychosocial issues, sexual dysfunction, lymphedema, pain, and neuropathy (Goncalves & Groninger, 2015; Silver & Gilchrist, 2011). These impairments can be long lasting; therefore, cancer survivorship is now being categorized as a chronic condition (Baxter, Newman, Longpr & Polo, 2017). During cancer treatment, approximately three out of four survivors experience cognitive impairments and approximately one-third experience issues after completing treatment (American Society of Clinical Oncology, 2015). Cognitive impairments occur when an INTERVENTIONS FOR CANCER SURVIVORS 5 individual has difficulty with combined processing functions which can include problem solving, self-regulating, reasoning, strategizing, recalling, concentrating, and performing goal directed behavior (Giles et al., 2013; Radomski & Morrison, 2014). Many survivors that experience cognitive impairments report problems with memory, concentration, attention, and executive functioning (Sleight & Stein-Duker, 2016). These cognitive skills are central to a variety of daily tasks, thus it is clear that cognitive impairments can be a source of distress for many survivors and problematic for participation in valued occupations and roles (Stuss, 2011; Hutchinson, Hosking, Kichenadasse, Mattiske, & Wilson, 2012; Rabinowitz & Levin, 2014). Occupations that can be affected due to cognitive impairments include IADLs such as paying bills, and running errands (Sleight & Stein-Duker, 2016). Additionally, cognitive impairments are associated with decreased community engagement, social role functioning, and productivity (Reid-Arndt, Yee, Perry & Hsieh, 2009). Survivors experiencing cognitive impairments report a greater difficulty maintaining their ability to participate in work (Wefel, Lenzi, Theriault, Davis & Meyers, 2004). Bradley, Neumark, Bednarek, & Schenk (2005) concluded within 6 months after diagnosis, one third of survivors with previous employment were no longer working. Those who returned to work reported working fewer hours per week than previously worked (Bradley et al., 2005). OT practitioners address cognition as it relates to participation and occupational performance (Giles et al., 2013). Therefore, OT practitioners can use their expertise by implementing interventions with cognitive strategies to address memory, organizational executive function deficits, and low-energy task that focus on restoring engagement in daily occupations (Longpr & Newman, 2011, p.1). OT practitioners can provide recommendations for strategies to compensate for or adapt to cognitive impairments for the purpose of resuming life roles such as a parent, spouse, worker, etc (Newman, 2011; Polo & Smith, 2017). INTERVENTIONS FOR CANCER SURVIVORS 6 Bower & Lamkin (2013) found persistent fatigue affected approximately 30% of survivors for up to 10 years after treatment had finished. Cancer-related fatigue can be defined as a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer and/or cancer treatment that is not proportional to recent activity and interferes with usual functioning (Bower, 2014, p. 27). For many survivors, fatigue is treated with pharmacological agents which are chosen based off of the cause of the fatigue (Yennurajalingam & Bruera, 2014; Koornstra, Peters, Donofrio, van den Borne, & de Jong, 2014). OT practitioners commonly implement the following nonpharmacologic interventions education, sleep hygiene, and energy conservation when treating fatigue (Pearson, Morris & McKinstry, 2016). Practitioners can provide interventions for sleep by encouraging proper sleep routines including sleep preparation and participation and modifying daytime activities to increase daytime arousal and decrease nighttime sleeplessness (American Occupational Therapy Association, 2012). Additionally, OT practitioners can assist in implementing energy conservation strategies such as taking additional rest periods, priority setting, delegation, and pacing oneself so that a cancer survivor can manage fatigue during occupational performance over time (Barsevick et al., 2004). The experience of pain for survivors can occur at the time of diagnosis, during treatment, or after treatment is finished (American Cancer Society, 2016). Researchers have found for 30 to 60% of survivors pain shifts from a short-term problem during treatment to a chronic problem, potentially lasting a lifetime (Brown, Ramirez, & Farquhar-Smith, 2014; Levy, Chwistek & Mehta, 2008). Cancer related pain can be treated through pharmacological and nonpharmacological interventions. Pharmacologic interventions primarily consist of opioids to treat pain however antidepressants, anticonvulsants, and nonsteroidal anti-inflammatory drugs INTERVENTIONS FOR CANCER SURVIVORS 7 may also be prescribed (Taverner, 2015). OT practitioners can work with survivors so that pain interferes less with their meaningful activities through cognitive behavioral strategies such as relaxation and visualization, or through more physical intervention such as electrocutaneous nerve stimulation (Hofmann, 2015). Specifically, for peripheral neuropathy, electrocutaneous nerve stimulation have been found to be an effective treatment intervention (Coyne, Wan, Dodson, Swainey & Smith, 2013). Education based interventions are found to improve knowledge, reduce unfavorable attitudes toward cancer pain, and decrease average pain intensity (Urlic & Hoffmann, 2010). Finally, OT practitioners can work with clients experiencing cancer related pain to teach coping strategies, identify painful activities and recommend adaptive equipment to decrease pain with these identified tasks (American Occupational Therapy Association, 2002). Psychosocial issues associated with survivorship include depression, anxiety, decreased self-esteem, and distress (Olesen et al., 2016). Pitman, Suleman, Hyde, & Hodgkiss (2018) estimated that 20% of survivors experience depression and 10% experience anxiety. These issues can continue long after the client is cancer-free and in remission, affecting quality of life and willingness to engage in meaningful occupations (Gossain & Miller, 2013; Hwang et al., 2015). The most common occupations that are affected by these psychosocial issues include bathing/showering, sleep, education, work, social participation, and leisure participation (Hwang et al., 2015). It is important for OT practitioners to help clients who may be dealing with psychosocial issues, such as depression, anxiety, and decreased self-esteem (Hwang et al., 2015). OT practitioners have the skills to help survivors with psychosocial issues by taking a clientcentered approach to modifying activities and the environment to improve quality of life (Longpr & Newman, 2011). INTERVENTIONS FOR CANCER SURVIVORS 8 Sexual dysfunction associated with survivorship can be found in any cancer type, stage and in both men and women (Brotto et al., 2012). In the United States, almost two-thirds of survivors received treatment for pelvic or breast tumors, and at least 50% of these individuals presented with severe and long-lasting sexual dysfunction (Schover et al., 2014). Sexual dysfunction decreases the sexual and overall quality of life for survivors (Barsky Reese et al., 2014). Some of the physical aspects that affect sexual dysfunction in survivors are fatigue, nerve damage, pain, dryness, discomfort and many other side effects from cancer related surgeries (Barsky Reese et al., 2014; DuHamel et al., 2016). Decreased body image, self-esteem, selfefficacy and partner communication are some of the psychosocial aspects that negatively affect sexual dysfunction (Jun et al., 2011; Krychman & Katz, 2012). OT practitioners can implement interventions using relaxation techniques and stress management, such as mindfulness-based interventions, to help clients with psychosocial problems associated with sexual dysfunction and survivorship (Newman, 2011). Additionally, OT practitioners can recommend alternate methods for sexual intimacy while managing symptoms to allow the client to return to their activities associated with their role as a partner (Newman, 2011). Lymphedema is a common side effect that can appear within days or years following cancer and/or treatment (Petrek, Senie, Peters, & Rossen, 2001; Shaw, Mortimer, & Judd, 2007). Researchers have found that an onset of lymphedema happens in approximately 80% of survivors following surgery (Petrek et al., 2001). Lymphedema is a progressive condition that can cause dysfunction in daily life, emotions, and cause stress (Gautam, Maiya, & Vidyasagar, 2011; Vojkov, Fialov & Hercogov, 2011). Rehabilitation is used to decrease the negative effects of lymphedema and increase quality of life (Gautam et al., 2011). OT interventions aid INTERVENTIONS FOR CANCER SURVIVORS 9 survivors in managing lymphedema in order to resume meaningful occupations (Hwang et al., 2015; Wigg, 2012). The American Occupational Therapy Association (AOTA) has deemed cancer care and oncology as an emerging area of practice in OT (American Occupational Therapy Association, 2011). Therefore, it is imperative to examine literature that supports evidenced-based OT interventions to maximize therapeutic outcomes for survivors. Review of Literature There is limited research on interventions for survivors facing cognitive impairments and a paucity specifically in OT literature. Support was found for OT interventions for cognitive impairments with conditions other than cancer. Medicare and insurance companies provide reimbursement for evidence-based interventions for cognitive impairment following traumatic brain injuries and strokes (Giles et al., 2013). There are moderate amounts of literature to support compensatory strategies to improve occupational performance of individuals with cognitive impairments, and multiple clinical trials demonstrating the effectiveness of interventions for this side effect (Radomski, Anheluk, Bartzen, & Zola, 2016; Gillen et al., 2015). Level I randomized control trials support compensatory strategies and cognitive training programs with people who had suffered a traumatic brain injury; time pressure management and cognitive strategy training with people who had suffered a stroke; and memory training in people with multiple sclerosis for cognitive impairments interventions (Cantor et. al., 2013; Winkens, Van Heugten, Wade, Habets, & Fasotti, 2009; Guesgens et al., 2006; Solari et al., 2004). Additionally, the effectiveness of group-based Cognitive Strategy Training (CST) was demonstrated in a level III pilot study with INTERVENTIONS FOR CANCER SURVIVORS 10 veterans with persistent mild cognitive disorder and history of traumatic brain injury (Huckans et al., 2010). Most studies with cognitive impairments were conducted by researchers from disciplines other than OT and much of the research does not explore cognitive impairments in terms of occupational performance. Therefore, it is unknown as to whether any study-related improvements can be generalized to the real world (Yu & Mathiowetz, 2014). The OT profession has the potential to grow its role with survivors experiencing cognitive impairments (Sleight & Stein-Duker, 2016) and there is a need to for evidence-based, client-centered interventions supporting occupational performance for survivors throughout life (Newman & Campbell, 2013). Research focuses on populations facing chronic fatigue other than cancer including rheumatoid arthritis, multiple sclerosis, pulmonary diseases, chronic fatigue syndrome, and postpolio syndrome (Barsevick et al., 2004). Interventions that have proven to be effective in reducing and managing clients chronic fatigue include education, support groups, sleep therapy, light exercise, and mindfulness (Reif, de Vries, Petermann & Grres, 2013; Purcell, Fleming, Burmeister, Bennett & Haines, 2011; Bjrneklett et al., 2012; Saarik & Hartley, 2010; Wanachi, Armer, & Stewart, 2011; Ritterband et al., 2012; Huether, Abbott, Cullen, Cullen & Gaarde, 2016; Barsevick et al., 2004; Yuen, Mitcham & Morgan, 2006; Santorelli & Kabat-Zinn, 2013; Johns et al., 2015). There is strong evidence within the literature to support the role and intervention strategies of OT practitioners working with survivors experiencing pain. Practitioners work with survivors to reduce the interference of pain with meaningful activities through cognitive behavioral strategies such as relaxation and visualization (Hofmann, 2015). Informational INTERVENTIONS FOR CANCER SURVIVORS 11 education based interventions on pain improve knowledge and reduce unfavorable attitudes toward cancer pain in addition to reducing average pain intensity (Urlic & Hoffmann, 2010). Finally, OT practitioners can work with clients with chronic pain to identify painful activities, teach coping strategies, and recommend adaptive equipment to decrease pain with identified tasks (AOTA, 2002). There is moderate Level I evidence for interventions regarding guided self-determination and psychoeducation/health education (Olessen et al., 2016; Badger et al., 2013; Guo et al., 2013). Guided self-determination interventions demonstrate improvement in physical well-being and quality of life in cancer survivors (Olessen et al., 2016). Psychoeducation and health education interventions decrease depression and anxiety levels along with improved emotional functioning in survivors (Guo et al., 2013; Badger et al., 2013). There is moderate evidence regarding self-management and cognitive behavioral therapy specific to survivorship (Liu, 2012; Loh, Packer, Chinna, & Quek, 2013), however other disciplines use these interventions. OToole, Connolly, & Smith (2013) implemented an occupation-based self-management program for chronic disease management as a whole, not specific to survivorship, and found the program to be effective in lowering anxiety and depression. Hwang et al. (2015) call for Level I evidence in OT practice regarding psychosocial issues and cancer. Due to stigma around the topic, there is little research on interventions addressing sexual dysfunction with survivors (Brotto et al., 2012). Few research articles are present within the OT profession, however the evidence from other professions falls within the OT scope of practice. There is research to support the use of modifications and adaptive tools for sexual intimacy (Iavazzo et al., 2015; Perz, Ussher, & The Australian Cancer and Sexuality Study Team, 2015). A limited number of articles support using psychological interventions, such as mindfulness- INTERVENTIONS FOR CANCER SURVIVORS 12 based cognitive therapy and psycho-educational therapy to educate the client on sexual dysfunction and how to address these concerns (Baker, Costa, Guarino & Nygaard, 2014; Brotto et al., 2012; DuHamel et al., 2016). Overall, interventions for sexual dysfunction is an area that is lacking in OT research and falls within the OT scope of practice due to this side effect decreasing a clients quality of life (American Occupational Therapy Association, 2014b; Newman, 2011). Lymphedema can be treated by OT practitioners certified in complete decongestive therapy (National Lymphedema Network, 2013). There is strong evidence to support complete decongestive therapy as an intervention, which includes manual lymphatic drainage, pneumatic pump drainage, and compression (Mioc & Pantea, 2013; Morgan, Murray, Moffatt, & Young, 2011; Todd, 2011; Uzkeser Karatay, Erdemci, Koc, & Senel, 2015; Wigg, 2012). In addition, there is moderate evidence to support exercise as an effective intervention to improve the quality of life of an individual with lymphedema (Bloomquist, Karlsmark, Christensen & Adamsen, 2014; Gautam et al., 2011). Weak evidence was found to support acupuncture as an effective treatment for lymphedema; however, it is not a traditional intervention implemented in OT practice (Yao et al., 2015). The OT profession is now encouraging therapists to view cancer as a chronic condition due to the above-mentioned side effects (Baxter et al., 2017). Researchers indicated the impact of physical activity, symptom management, multidisciplinary rehabilitation, psychosocial, sexuality, and return-to-work OT interventions in a recent systematic review (Hunter, Gibson, Arbesman, & DAmico, 2017a & 2017b). Researchers also indicated that there is a need for further research exploring occupation-based interventions with integration of participation outcomes during various points in the survivorship continuum (Hunter et al., 2017b). INTERVENTIONS FOR CANCER SURVIVORS 13 Researchers in this study uncovered a paucity of evidence exploring current OT intervention practices with survivors, which is necessary for the OT profession to reflect upon so that survivors occupational needs are being met. Therefore, the purpose of this study is to describe how OT practitioners are addressing survivors side effects and occupational performance deficits in order to analyze current OT practice trends. Methods Research Design Researchers utilized survey methodology in the form of an anonymous electronic questionnaire to collect information about the current interventions OT practitioners are using during service provision with survivors. This method was chosen to allow for low costs, convenient data gathering, and to recruit a large number of participants (Creswell, 2009). Researchers incorporated a pilot and pivotal phase. A pilot phase is recommended for web survey development to maximize response and minimize measurement error, as it allows for review of the entire survey process and assesses the surveys success, including what is working and what needs improvement (Dillman, Smyth, & Christian, 2014; Portney & Watkins, 2015). This study was approved by the University of Indianapolis institutional review board. All participants indicated consent prior to completing the survey. Recruitment Inclusion criteria consisted of participants that were English speaking OT practitioners, OTRs or OTAs, working with adult (18+) cancer survivors. There was no indicated exclusion criteria. Both phases of recruitment included sending an electronic survey link to professional contacts. Non-probability purposive sampling was utilized to recruit participants for the pivotal phase of the study, this is an effective way to generate a sufficient sample with populations that INTERVENTIONS FOR CANCER SURVIVORS 14 represent insight towards the purpose of the study (Carter & Lubinsky, 2015; DePoy & Gitlin, 2015). Potential participants were asked to provide the researchers with email contacts of their connections who met the inclusion criteria or to distribute the survey to these connections and indicate the number of connections contacted in order to calculate a response rate. Procedures and Data Collection Survey development. Based on a thorough review of the literature, the researchers developed a 19-item novel questionnaire. Questions were developed specific to pain, fatigue, neuropathy, cognitive impairments, sexual dysfunction, psychosocial issues, and lymphedema. Themes derived from the OT Practice Framework: 3rd Edition guided occupations included in the survey. Since there are no established psychometric properties, expert reviewers were utilized to establish content validity to identify and correct technical issues within the survey that the researchers may have missed (Carter, Lubinsky, & Domholdt, 2011; Dillman et al., 2014). The researchers obtained feedback from five experts in the area of survivorship from diverse OT practice settings: inpatient, outpatient, home health, and skilled nursing facility. Changes made to the original survey based on the experts feedback resulted in a 25-item pilot questionnaire. Pilot. Data collection through the pilot and pivotal phase of this study consisted of a survey through Qualtrics, an online survey platform used to collect and analyze data (Qualtrics, 2017). This questionnaire was estimated to take ten minutes to complete and consisted of closed ended and partially closed-ended questions. Eleven participants completed the survey for the pilot phase. Data was analyzed, and questions were improved based off of responses in order to enhance survey success. Pivotal. Based on changes made from the pilot survey, researchers finalized a 34-item questionnaire that included closed and partially closed-ended questions. In order to allow INTERVENTIONS FOR CANCER SURVIVORS 15 participants to only answer questions relevant to the side effects they directly address, the survey used skip logic to determine the flow of questions presented to each participant. Skip logic allows the survey creator to dictate how questions are presented based on the answers given for previous questions. An example of skip logic in this survey occurs when a participant selects the option are not addressing to a specific side effect then the questionnaire skips to the next section. If the participant selects that they are addressing the side effect then this skip logic allows the researchers to go deeper and collect more information on interventions and referrals for that side effect. Due to this skip logic, not all of the 34 questions were asked of every participant. Overall, this is a strength of the survey because it allows for more information to be gathered on side effects being addressed and saves participants time from answering questions about side effects, they have previously stated they are not addressing. See Appendix A for the complete pivotal survey questionnaire and Appendix B (table 1B) for question distribution. An initial email with study-related information and a request to participate was emailed to potential participants, posted on social networking sites, American Occupational Therapy Organization forums, and willing state professional organization websites. For the pivotal phase, the aim was to generate a 26% response rate. This response rate is approximately midpoint to the recommended liberal (5%) and stringent conditions (58%) for survey response rates (Nulty, 2008). Data Analysis Results were collected and data analyzed using descriptive statistics through Qualtrics (Qualtrics, 2017). INTERVENTIONS FOR CANCER SURVIVORS 16 Results Participants The survey was sent to 267 potential participants. Eighty-two surveys were returned, two lacked informed consent, and 10 were partially completed resulting in 12 surveys being discarded. Therefore, 70 completed surveys were entered in the data set resulting in a response rate of 26.20%. Table 2B presents respondents practice setting based on single or multiple settings. Respondents indicated treating survivors across the cancer care continuum. See Figure 1 for further details. Table 3B describes respondents caseload of survivors. Current Practice Trends Respondents identified the top three referral sources to be medical oncologist (17.79%, f= 58), medical doctor/hospitalist/physiatrist (15.03%, f=49), and primary care physician (14.11%, f=46). See Table 4B for further information on referral sources. Occupations. Respondents reported addressing the following ADLs among all side effects: dressing (median 17.20%), functional mobility (median 17.11%), bathing/showering (median 15.57%), and personal hygiene and grooming (median 15.45%). Health management and maintenance was the only IADLs that respondents identified as addressing with the side effect of sexual dysfunction. The three main IADLs being addressed were health management and maintenance (median 16.97%), home establishment and management (median 13.93%), and meal prep and clean up (median 11.72%). Leisure is addressed across all side effects (median 23.12%), more so than return to work (median 19.22%). Occupations in the community such as shopping (median 7.50%) and driving/community mobility (median 8.33%) are infrequently addressed. Across the side effects, financial management is not frequently being addressed (median 2.08%). See Table 3B for side effects addressed in occupation(s). INTERVENTIONS FOR CANCER SURVIVORS 17 Pain. Fifty-nine respondents, (84.29%) reported directly addressing pain when working with survivors. Participants reported using interventions such as education and problem-solving (18.21%, f=59), cognitive-behavioral interventions (15.12%, f=49), and promotion of selfmanagement of pain flare-ups (14.81%, f=48). One respondent (1.43%) reported not addressing pain in practice and ten (14.29%) reported not addressing pain but referring to another health care professional including medical doctors (60.00%, f=9), physical therapists (20.00%, f=3), and/or professionals in complementary and alternative medicine (20.00%, f=3). Neuropathy. Fifty-five respondents (78.57%) reported directly addressing neuropathy when working with survivors. Participants reported using interventions such as compensatory and adaptive strategies (46.55%, f=54), cognitive-behavioral interventions (22.41%, f=26) and sensory stimulation (19.83%, f=23). Nine respondents (12.86%) reported not addressing neuropathy in practice and six (8.57%) reported referring to another health care professional including medical doctors (58.33%, f=7) and physical therapists (33.33%, f=4). Fatigue. Sixty-nine respondents (98.57%) reported directly addressing fatigue when working with survivors. Participants reported using interventions such as energy conservation (21.10%, f=65), education (20.78%, f=64), and light exercise (18.18%, f=56). Those OT practitioners not addressing fatigue in practice reported referring clients to other OT practitioners (100%, n=1). Psychosocial. Forty-eight respondents (68.57%) reported directly addressing psychosocial issues when working with survivors. Participants reported using interventions such as self-management (23.04%, f=44), problem-solving therapy (16.23%, f=31), and mindfulness based therapy (14.14%, f=27). Those OT practitioners not addressing psychosocial issues in practice were often referring clients to psychologists (38.46%, f=10), psychiatrists (26.92%, INTERVENTIONS FOR CANCER SURVIVORS 18 f=7), and other health professionals (social workers, nurse case managers, and physicians [34.62%, f=9]). Eight respondents (11.43%) respondents reported that not addressing psychosocial issues with cancer survivors. Cognitive impairments. Fifty-six respondents (80%) reported directly addressing cognitive impairments when working with survivors. Participants reported using interventions such as compensatory strategies (36.08%, f=57), cognitive strategy training programs (25.32%, f=40), memory training (21.52%, f=34), and cognitive behavioral interventions (15.82%, f=25). Six respondents (8.56%) reported referring cancer survivors with cognitive impairments to the following other healthcare professionals speech language pathologist (62.50%, n=5), neuropsychologist (25.00%, n=2), and OT specialist (12.50%, n=1). Eight respondents (11.43%) reported not addressing cognitive impairments with survivors. Lymphedema. Thirty-five respondents (50%) reported directly addressing lymphedema with survivors. Respondents reported using interventions such as exercise regimens (19.75%, f=32), compression garments (14.20%, f=23), and manual lymphatic drainage (16.05%, f=26). Those not addressing directly are referring to another health-care professionals (27.14%, n=19) such as certified lymphedema therapist (76.92%, f=20) and medical doctor (23.08%, f=6). Sixteen respondents (22.86%) reported not addressing lymphedema with survivors. Sexual Dysfunction. Across all side effects, the occupation of sexual activity was rarely being addressed in practice (median 1.46%). Fourteen respondents (20.29%) reported directly addressing sexual dysfunction, and those not addressing reported referring to another health-care professional (7.25%, n=5) such as physical therapist (26.67%, f=4), psychologist (20%, f=3), and gynecologist (20%, f=3). Fifty respondents (72.46%) reported not addressing sexual dysfunction or referring to another healthcare provider. In practice, the interventions participants reported INTERVENTIONS FOR CANCER SURVIVORS 19 using include modifying sexual activity (30.77%, f=12), energy conservation strategy (20.51%, f=8), and modifications and adaptive tools such as lubricants, vibrators, or making other activity changes (15.38%, f=6). Discussion Respondents reported that 31% of cancer survivors were seen during active medical treatment and similar results were found by Pergolotti, Cutchin, Weinberger, & Meyer (2014), where 32% of older adult cancer survivors received OT services within two years of their cancer diagnosis. This is alarming as seemingly no progress has been made in increasing OTs role in cancer care and oncology despite being an emerging practice area. Respondents identified treating middle-aged adults at an equal rate to which they are treating older adults. Smith, Smith, Hurria, Hortobagyi & Buchholz, (2009) found that by 2030 there will be an increase in cancer prevalence in older adults from 61% to 70% (a 9% increase). OT practitioners need to prepare for this increase in older adult survivors by providing needed services in the area of oncology and cancer care. Further research is necessary to identify effective interventions for treating chronic conditions related to cancer within this population. Setting Acute care was reported as the most frequent practice environment among respondents in both single and multiple settings. Given the chronic nature of side effects, this is problematic for survivors who need OT services beyond the acute setting. Based on these results, survivors may be falling through the cracks in terms of OT service provision in practice settings other than acute care. Polo and Smith (2017) note the effects of cancer and cancer treatments can impact survivors during, shortly after, and more than 20 years after treatment; therefore, survivorship care needs to be redefined beyond the acute phase. This gap in practice settings and point of care INTERVENTIONS FOR CANCER SURVIVORS 20 has created a call for OT practitioners in the community setting (Polo & Smith, 2017). OT practitioners need to recognize their potential in the community setting for promoting health and well-being for survivors because many survivors are receiving their medical care in the community setting (Polo & Smith, 2017). Referrals Due to the chronic conditions of cancer, survivors will likely still be experiencing side effects after oncology follow-ups are completed. Therefore, primary care physicians play a vital role in identifying late side effects and occupational performance deficits associated with cancer. Respondents of this study reported that primary care physicians that provide follow-up care in the community refer to OT services at a dismal rate. The lack of referral could stem from primary care physicians and cancer survivors not realizing OTs scope of practice in relation to treating cancer survivors with chronic conditions. If lack of referral is due to limited knowledge about OTs scope of practice, education and advocacy efforts can serve to bridge this gap and improve patient care in the primary care setting (Metzler, Hartmann & Lowenthal, 2012). Another potential explanation for the low referral rate may be that survivors do not recognize or report their side effects and occupational performance deficits. If this is the case, survivors may benefit from a survivorship care plan that provides education and resources to address short- and long-term side effects of treatment (McCabe et al., 2013) and screening of occupational performance deficits for OT referrals. A third potential explanation for the low referral rate from primary care physicians may be that their caseload is too saturated to adequately serve oncology patients (Grunfeld & Earle, 2010). Further research should be conducted to identify the source of low referral rate from primary care physicians for OT services. OT practitioners can play an important role in the primary care setting through their expertise in addressing deficits that INTERVENTIONS FOR CANCER SURVIVORS 21 impair occupational participation and performance related to chronic conditions (American Occupational Therapy Association, 2014a). Work Evidence suggests survivors have a difficult time returning to work and many survivors work less hours or do not return to work at all (Bradley et al., 2005). Hunter et al., (2017b) found limited evidence to support strategies for return to work and declared return to work an emerging intervention area in cancer survivorship (Hunter et al., 2017b). Results of this study, align with Hunter et al., (2017b) as only a small percent of OT practitioners identified addressing work. Future research should focus on effective return to work interventions for survivors. Functional mobility and community participation In this study functional mobility was an ADL addressed by OT practitioners across all side effects; however, driving and community mobility were not commonly addressed IADLs. Fatigue, pain, and neuropathy Participants responses of commonly used interventions for fatigue, pain, and neuropathy, include education, energy conservation, and cognitive-behavioral therapy, which align with current evidence (Reif et al., 2013; Barsevick et al., 2004; Ahlberg, Ekman,Gaston-Johansson, & Mock, 2003; Yuen et al., 2006; Santorelli & Kabat-Zinn, 2013; Johns et al., 2013). Therefore, OT practitioners are likely using evidence-based practice to guide their clinical reasoning and intervention planning when treating survivors who face fatigue, pain, and neuropathy. Sexual activity and sexual dysfunction Sexual activity is an occupation, within the scope of OT practice, and has been reported as a frequent area of difficulty for cancer survivors within the first-year post-treatment (Hwang et al., 2015). However, findings from this study suggest that sexual activity is infrequently being INTERVENTIONS FOR CANCER SURVIVORS 22 addressed in practice. Across all survivorship side effects, sexual activity was the least addressed ADL. There is moderate evidence to support exercise and limited evidence for utilizing psychoeducational intervention to aid in return to sexual activity (Hunter et al., 2017b). Contrary to this evidence, the current study revealed that these interventions are being infrequently utilized in practice. Respondents of this study reported using task modification, energy conservation, and adaptive tools to address sexual dysfunction, yet there is a lack of robust literature to support these interventions. This illustrates a gap in the available research for effective interventions for sexual dysfunction and what is being reported by practitioners addressing sexual dysfunction with survivors. Cognition Cognitive impairments impact instrumental activities of daily living such as paying the bills (Sleight & Stein-Duker, 2016), yet the occupation of financial management was infrequently identified by respondents as being addressed in practice. There is a paucity in research guiding OT practitioners in interventions addressing cognitive impairments with survivors. Respondents identified using compensatory strategies, cognitive strategy training programs, memory training and cognitive behavioral interventions to address impairments despite the limited evidence to support the use of these interventions. Many studies involving cognitive impairments are conducted by researchers from disciplines other than OT and much of the research does not explore cognitive impairments specific to survivors. Future research needs to be completed to validate the use of the above-mentioned interventions to address cognitive impairments among cancer survivors. INTERVENTIONS FOR CANCER SURVIVORS 23 Psychosocial issues According to the literature, there is strong evidence for psychosocial interventions that are effective in reducing anxiety and depression after cancer treatment such as cognitivebehavioral therapy and educational interventions, including problem solving therapy (Hunter et al., 2017b). However, cognitive behavioral therapy was not a frequently reported intervention utilized in practice by the respondents. There is moderate evidence for stress management and life review interventions that are effective in improving quality of life in survivors (Hunter et al., 2017b), however, respondents in this study reported using life review infrequently. Participants reported self-management as the most frequent intervention, however, there is limited evidence specifically related to OT and survivorship to support this intervention in terms of psychosocial issues. Self-management has shown to be effective in improving quality of life in survivors, however, health professionals in disciplines other than OT are using this intervention (Korstjens et al., 2008; Loh et al., 2013; Risendal et al., 2014). There is an opportunity for OT research exploring self-management interventions to address psychosocial issues in survivorship. Lymphedema When treating lymphedema, respondents are most commonly utilizing exercise as an intervention, which have been found to have strong evidence in a systematic review (Hunter et al., 2017a). OT practitioners are likely using evidence-based practice to guide their clinical reasoning for the intervention, exercise. Limitations This study had several limitations. First, due to purposive sampling and the limited sample size, results are not generalizable. The limited sample size is likely due to the inability of practitioners to professionally identify themselves as specialists within this emerging practice INTERVENTIONS FOR CANCER SURVIVORS 24 area. Although the sample size was limited, the response rate fell within the recommended liberal and stringent acceptable conditions. A second limitation of this study is that during the expert review process, practitioners from all areas besides hospice and palliative care provided initial recommendations for change to the survey. However, a thorough literature review that entailed all areas of practice was performed and information gleaned from this informed survey development. Another limitation of the study was the results of one question were not reported. Due to survey design, participants were asked twice about the side effects they are addressing with cancer survivors and after analyzing both questions researchers decided not to report on the first question. Implications for Practice Results of this study support a variety of implications for OT practice including: Educating healthcare practitioners and survivors on OTs role in cancer care and oncology is imperative to assure survivors receive adequate care for their occupational performance needs. A forecasted increase in the number of survivors with potential performance needs is indicated in current literature. Researchers found primary care physicians are referring to OT services at a low rate. Increasing OTs presence in primary care settings is critical to close the gap in access to OT services in order to address survivors occupational performance deficits beyond the acute phase. Improving coordination of care so that survivors receive access to holistic and quality services is essential. Therefore, OT practitioners should be an integral part of an interdisciplinary care coordinating team in providing recommendations in building survivorship care plans. INTERVENTIONS FOR CANCER SURVIVORS 25 Across all side effects, sexual activity is the least addressed ADL. Research is needed to explore why practitioners are not addressing sexual dysfunction with cancer survivors during service provision. Additionally, research is required in the field of OT to indicate effective interventions for cancer survivors for the side effects of sexual dysfunction. Respondents identified using compensatory strategies, cognitive strategy training programs, memory training and cognitive behavioral interventions despite the limited evidence to support the use of these interventions with this population. Further research in the OT profession is needed to support the efficacy of these interventions. Respondents identified self-management of psychosocial issues as a top intervention despite limited evidence specifically related to OT. Further research in the OT profession is needed to support the efficacy these interventions. For improved professional connection within this emerging practice area, AOTA should consider the creation of a specialty subsection within a Specialty Interest Section (SIS) that allows further breakdown of practitioners in cancer care and oncology. This will allow for improved professional connections and increased potential for research collaboration within this emerging practice area. INTERVENTIONS FOR CANCER SURVIVORS Appendix A Finalized Pivotal Study Survey Questionnaire Do you treat cancer survivors? o Yes o No Do you work in multiple practice settings? o Yes o No What types of settings do you work in? (Select all that apply) Acute Outpatient Inpatient Skilled Nursing Facility Home Health Hospice What type of setting do you work in? o Acute o Outpatient o Inpatient o Skilled Nursing Facility o Home Health o Hospice What percentage of your case load is cancer survivors? o <10 o 11-20 o 21-30 o 31-40 26 INTERVENTIONS FOR CANCER SURVIVORS o 41-50 o 51-60 o 61-70 o 71-80 o 81-90 o >90 Who typically recommends occupational therapy services for your cancer survivor clients? (Select all that apply) Primary Care Physician Neurosurgeon Medical Doctor/Hospitalist Medical oncologist Surgical oncologist Radiation oncologist Oncology nurse Oncology social worker Psychiatrist Patient navigator/case manager/care coordinator Home health aid Discharge coordinator Speech language pathologist Physical Therapy Other ________________________________________________ At what point in time do you typically start seeing cancer survivors? (Select all that apply) Prior to receiving active treatment Actively receiving life saving treatment Receiving sustaining quality of life care Post treatment: remission 27 INTERVENTIONS FOR CANCER SURVIVORS 28 What is the age range of the cancer survivors you see? (Select all that apply) Young Adult (18-39) Middle Adult (40-64) Late Adult (65+) Which of the following side effects impacting occupational performance do you address with cancer survivors? (Select all that apply). Note: In this context, a side effect is defined as a secondary condition as a result of cancer and/or its medical treatment. Pain Neuropathy Fatigue Cognitive Impairment Sexual Dysfunction Psychosocial Issues Lymphedema For each side effect, select the activities of daily living (ADLs) that you most frequently address within your occupational therapy interventions: (Select all that apply) Bathi ng/Sh oweri ng Toilet ing & Toilet Hygie ne Dressi ng Swall owing /Eatin g Feedi ng Functi onal Mobil ity Perso nal Devic e Care Perso nal Hygie ne & Groo ming Sexua l Activi ty N/A Pain Neuro pathy Fatigu e Cogni tive Impai rment INTERVENTIONS FOR CANCER SURVIVORS Lymp hede ma Psych osocia l Issues Sexua l Dysfu nction 29 For each side effect, select the instrumental activities of daily living (IADLs) that you most frequently address within your occupational therapy interventions: (Select all that apply) Fina Hea Ho Car Car Chil Co Driv Mea Reli Safe Sho N/A ncia lth me e of e of d mm ing l giou ty ppin (13) l Man Esta Oth Pets Rea unic and Prep s and g Man age blis ers ring atio Co arati and Eme (12) age men hme n mm on Spir rgen men t & nt & Man unit and itual cy t Mai Man age y Clea Acti Mai nten age men Mo nup vitie nten ance men t bilit s ance t y and Exp ressi on Pain Neu ropa thy Fati gue Cog nitiv e Imp airm ent INTERVENTIONS FOR CANCER SURVIVORS Ly mph ede ma Psy chos ocia l Issu es Sex ual Dys func tion 30 For each side effect, select the other areas of occupation that you most frequently address within your occupational therapy interventions: (Select all that apply) Social Leisure Rest/Sleep Work Education N/A Participation Pain Neuropathy Fatigue Cognitive Impairment Lymphedem a Psychosocial Issues Sexual Dysfunction Are you addressing pain as a side effect with your cancer survivor clients? o Yes - Directly addressing in practice INTERVENTIONS FOR CANCER SURVIVORS o Yes - Referring to another health-care professional o No What interventions are you utilizing in practice when addressing pain with cancer survivors? (Select all that apply) Cognitive-Behavioral Interventions (i.e. distraction, deep breathing, relaxation, etc.) Education and problem-solving (i.e. body mechanics, posture, ergonomics etc.) Self-management of pain flare-ups Using physical agent modalities Manual Techniques Taping Exercising Energy conservation Other ________________________________________________ What professionals are you referring cancer survivors to for pain? (List all that apply) Physical Therapist Medical Doctor Other ________________________________________________ Are you addressing neuropathy as a side effect with your cancer survivor clients? o Yes - Directly addressing in practice o Yes - Referring to another health-care professional o No What interventions are you utilizing in practice when addressing neuropathy with cancer survivors? (Select all that apply) Cognitive-Behavioral Interventions (i.e. distraction, deep breathing, relaxation, etc.) Compensatory and adaptive strategies Taping Sensory stimulation Other ________________________________________________ 31 INTERVENTIONS FOR CANCER SURVIVORS 32 What professionals are you referring cancer survivors to for neuropathy? (Select and/or list all that apply) Physical Therapist Medical Doctor Other ________________________________________________ Are you addressing fatigue as a side effect with your cancer survivor clients? o Yes - Directly addressing in practice o Yes - Referring to another health-care professional o No What interventions are you utilizing in practice when addressing fatigue with cancer survivors? (Select all that apply) Cognitive-Behavioral Interventions (i.e. distraction, deep breathing, relaxation, etc.) Education Support Groups Sleep Hygiene therapy Light Exercise Energy Conservation Mindfulness Other ________________________________________________ What professionals are you referring survivors to for fatigue? (Select and/or list all that apply) Physical Therapist Medical Doctor Other ________________________________________________ Are you addressing cognitive impairment as a side effect with your cancer survivor clients? o Yes - Directly addressing in practice o Yes - Referring to another health-care professional o No INTERVENTIONS FOR CANCER SURVIVORS 33 What interventions are you utilizing in practice when addressing cognitive impairment with cancer survivors? (Select all that apply) Compensatory strategies Cognitive strategy training programs Memory training Cognitive-Behavioral Interventions (i.e. distraction, deep breathing, relaxation, etc.) Other ________________________________________________ What professionals are you referring cancer survivors to for cognitive impairment? (Select and/or list all that apply) Neuropsychologist Speech Language Pathologist Other ________________________________________________ Are you addressing sexual dysfunction as a side effect with your cancer survivor clients? o Yes - Directly addressing in practice o Yes - Referring to another health-care professional o No What interventions are you utilizing in practice when addressing sexual dysfunction with cancer survivors? (Select all that apply) Modifications and adaptive tools (i.e. such as using lubricants, vibrators, or making other activity changes) Mindfulness-based interventions (i.e. guided imagery) Cognitive Behavioral Therapy Energy conservation strategy Modifying sexual activity Exercise Other ________________________________________________ What professionals are you referring cancer survivors to for sexual dysfunction? (Select and/or list all that apply) Gynecologist INTERVENTIONS FOR CANCER SURVIVORS Urologist Psychiatrist Psychologist Physical Therapist Other ________________________________________________ 34 Are you addressing psychosocial issues as a side effect with your cancer survivor clients? o Yes - Directly addressing in practice o Yes - Referring to another health-care professional o No What interventions are you utilizing in practice when addressing psychosocial issues with cancer survivors? (Select all that apply) Cognitive-Behavioral therapy Self-management Guided self-determination Psychoeducation/Health education Mindfulness based therapy Life review (Reminiscence Therapy) Expressive or disclosure groups Problem-solving therapy Other ________________________________________________ What professionals are you referring cancer survivors to for psychosocial issues? (Select and/or list all that apply) Psychiatrist Psychologist Other ________________________________________________ Are you addressing lymphedema as a side effect with your cancer survivor clients? o Yes - Directly addressing in practice o Yes - Referring to another health-care professional INTERVENTIONS FOR CANCER SURVIVORS 35 o No What interventions are you utilizing in practice when addressing lymphedema with cancer survivors? (Select all that apply) Exercise regimens Complete Decongestive Therapy Manual lymphatic drainage Pneumatic pump drainage Multi-layer bandaging Compression garments Physical agent modalities Other ________________________________________________ What professionals are you referring cancer survivors to for lymphedema? (Select and/or list all that apply) Certified Lymphedema Therapist Medical Doctor Other _______________________ INTERVENTIONS FOR CANCER SURVIVORS 36 Appendix B Tables and Figures of Study Results Table 1B Survey Question Distribution No. of Questions Content Covered 9 Demographics (i.e. practice setting, percentage of cancer survivor patients, age range of patients seen, and which side effects they address) 1 General question to determine which side effects therapists are treating 3 Grid-style questions with each side effect on one axis and occupations on the other. Occupations were based on the Occupational Therapy Practice Framework a) The first set of grid questions covers ADLs b) The second set of grid questions covers IADLs c) The third set of grid questions covers the remaining occupations 3 Pain questions: to determine whether the side effect is being treated in practice, what interventions are being used, and/or who therapists are referring patients to for the given side effect 3 Neuropathy questions: to determine whether the side effect is being treated in practice, what interventions are being used, and/or who therapists are referring patients to for the given side effect 3 Fatigue questions: to determine whether the side effect is being treated in practice, what interventions are being used, and/or who therapists are referring patients to for the given side effect 3 Cognitive impairment questions: to determine whether the side effect is being treated in practice, what interventions are being used, and/or who therapists are referring patients to for the given side effect 3 Sexual dysfunction questions: to determine whether the side effect is being treated in practice, what interventions are being used, and/or who therapists are referring patients to for the given side effect 3 Psychosocial issues questions: to determine whether the side effect is being treated in practice, what interventions are being used, and/or who therapists are referring patients to for the given side effect 3 Lymphedema questions: to determine whether the side effect is being treated in practice, what interventions are being used, and/or who therapists are referring patients to for the given side effect INTERVENTIONS FOR CANCER SURVIVORS 37 Table 2B Respondents Indicated Practice Setting (PS) Multiple PS Single PS Average Acute 34.67% 44.44% 38.18% Outpatient 26.67% 30.56% 27.27% Inpatient 25.33% 11.11% 20.91% Skilled Nursing Facility 5.33% 2.78% 4.55% Home Health 8.00% 11.11% 8.18% Hospice 1.33% 0.00% 0.91% Note. Respondents could report working in multiple or a singular practice setting. Figure 1B. Cancer survivorship continuum. Point of time when respondents report treating survivors. f = frequency INTERVENTIONS FOR CANCER SURVIVORS 38 Table 3B Respondent's Caseload Demographics Caseload Cancer Survivor Patients (%) % of Respondents Less than 30% 57.14% 31-60% 17.14% Greater than 61% 25.71% Age % of Respondents Young Adult (18-39) 24.71% Middle Adult (40-64) 38.51% Late Adult (65+) 36.78% INTERVENTIONS FOR CANCER SURVIVORS 39 Table 4B Healthcare Professionals Recommending Occupational Therapy Services to Cancer Survivors Professional Title % of Respondents Medical Oncologist 17.79% Medical Doctor/Hospitalist/Physiatrist 15.03% Primary Care Physician 14.11% Surgical Oncologist 11.96% Neurosurgeon/Neurologist 8.59% Rehab Professionals (Speech Language Pathologist, Physical Therapist) 8.28% Patient Navigator/Case Manager/Care Coordinator 6.44% Radiation Oncologist 5.83% Oncology Nurse 5.83% Oncology/Medical Social Worker 2.76% Psychiatrist 1.84% Other: Critical Care, Automatic Order Set from ADL Screening, Palliative Care Nurse Practitioner, Nurse Practitioner, Home Health Aid 1.53% INTERVENTIONS FOR CANCER SURVIVORS 40 Table 5B Occupations Addressed with Each Individual Side Effect Pain Cognitive Psycho Sexual Neurop impairme Lymph social Dysfuncti athy Fatigue nts edema Issues on Activities of Daily Living Bathing/Showering 16.61% 15.42% 17.20% 16.25% 15.57% 14.47% Toileting 12.27% 12.78% 14.58% 15.19% 11.38% 13.82% 11.11% Dressing 19.49% 18.94% 17.20% 15.19% 19.16% 15.79% 5.56% Eating 3.25% 0.88% 3.50% 4.59% 4.79% 4.61% 0.00% Feeding 4.69% 8.81% 7.87% 9.19% 6.59% 5.92% 0.00% Functional Mobility 20.58% 20.26% 17.78% 15.90% 16.77% 17.11% 5.56% Device Care 5.42% 4.85% 4.96% 8.38% 6.58% 5.56% Grooming 16.25% 16.74% 15.45% 15.19% 14.97% 16.45% 5.56% Sexual Activity 1.44% 1.32% 1.46% 0.71% 2.40% 5.26% 61.11% Instrumental Activities of Daily Living Financial Management 0.74% 2.08% 3.62% 10.20% 1.56% 5.42% 0.00% Health Management 16.97% 17.08% 11.98% 12.83% 24.22% 11.67% 100% Home Management 15.50% 15.42% 13.93% 11.95% 14.84% 8.75% 0.00% Care of Others 11.07% 10.00% 10.86% 6.71% 9.38% 10.00% 0.00% Care of Pets 7.38% 7.08% 9.19% 4.96% 5.47% 6.67% 0.00% Child Rearing 6.27% 3.75% 5.85% 4.08% 5.47% 7.92% 0.00% Communication Management 1.85% 2.50% 3.06% 9.04% 1.56% 7.50% 0.00% Driving/Community Mobility 5.90% 9.58% 7.80% 8.75% 9.38% 8.33% 0.00% Meal Preparation 10.79% 11.72% 9.58% 16.61% 15.83% 15.60% 7.77% 5.56% 0.00% INTERVENTIONS FOR CANCER SURVIVORS 41 Religious/Spiritual Activities 2.21% 1.25% 3.34% 3.50% 0.78% 9.58% 0.00% Safety Maintenance 6.27% 7.92% 6.13% 10.79% 7.03% 8.75% 0.00% Shopping 9.23% 7.50% 8.64% 6.41% 8.59% 5.83% 0.00% Other Occupations Social Participation 20.63% 20.33% 21.57% 23.43% 19.09% 25.43% 40.00% Leisure 23.32% 23.08% 22.35% 23.43% 20.00% 23.12% 26.67% Rest/Sleep 26.46% 19.23% 23.14% 14.29% 22.73% 16.76% 20.00% Work 17.49% 21.98% 19.22% 20.00% 22.73% 18.50% 6.67% Education 12.11% 15.38% 13.73% 18.86% 15.45% 16.18% 6.67% INTERVENTIONS FOR CANCER SURVIVORS 42 References Ahlberg, K., Ekman, T., Gaston-Johansson, F., & Mock, V. 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