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... Education and Sensory Friendliness in Community Settings Madeline Mahoney 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: Jennifer Fogo, PhD, OTR Running Head: EDUCATION & SENSORY FRIENDLINESS A Capstone Project Entitled Education and Sensory Friendliness in Community Settings 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 Madeline Mahoney 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 EDUCATION & SENSORY FRIENDLINESS 3 Abstract The Lafayette Family YMCA established a community partnership with Franciscan Health and the two organizations are a part of a building that offers services from both organizations. The purposes of this doctoral capstone were: 1) To help build the relationship between Franciscan Health and the Lafayette Family YMCA and, 2) Provide education to community organizations on the sensory systems. To obtain an understanding of the needs of Franciscan Health and the Lafayette Family YMCA, a needs assessment took place, which consisted of qualitative interviews, observations, and surveys. Based on the results from the needs assessment, the implementation phase of the project involved giving presentations on the sensory systems to multiple community organizations, developing a YMCA exercise class guide for Franciscan Health therapists, leading tours of Franciscan Health for YMCA staff, and developing an outline for a sensory friendly program for the YMCA. Overall, the completed projects had a positive outcome. The presentations on the sensory systems received excellent feedback. The YMCA exercise guide was helpful for therapists to reference. The YMCA staff learned about the services Franciscan Health offers through attending tours, and the sensory friendly program outline provided a starting point for creating a sensory friendly event at the YMCA in the future. Dissemination of the doctoral capstone outcomes occurred with both Franciscan Health and Lafayette Family YMCA staff. Ongoing quality improvement will continue to occur after the completion of the doctoral capstone. EDUCATION & SENSORY FRIENDLINESS 4 Education and Sensory Friendliness The Lafayette Family YMCA has established a new community partnership with Franciscan Health. The two organizations are a part of a new building that offers both Franciscan Health and YMCA services. In December 2018, the building officially opened for public use. The Franciscan Health portion of the building includes the Franciscan Physician Network Primary Care and Sports Medicine offices on the main floor and outpatient therapy services for pediatrics and adults on the second floor. The YMCA includes workout equipment, group fitness rooms, a child watch center, daycare, pool, and a Junior Achievement Center. The clients that receive therapy through Franciscan Health share equipment and resources with the YMCA. After a client finishes outpatient services through Franciscan Health, they receive a free three-month membership to the YMCA. The idea is to help promote health and fitness while meeting the needs of members in the community. Due to the novel partnership between the two organizations, it was important to meet the needs of both establishments. Thus, the purpose of this doctoral capstone experience (DCE) was to help build the relationship between Franciscan Health and the Lafayette Family YMCA and provide education on sensory systems and sensory processing to community organizations. Sensory Regulation Self-regulation is a technique that allows one to control their psychological and physical self (Kalimullin, Kuvaldina, & Koinova-Zoellner, 2016). Self-regulation techniques can lower ones agitation and tension, help one overcome fears, and improve stress-resistance (Kalimullin et al., 2016). Sensory rooms are one way to help persons with sensory regulation difficulties calm and control their reactions. EDUCATION & SENSORY FRIENDLINESS 5 The goal of a sensory room is to help individuals self-regulate via an environment that enables sensory modulation and offers a quiet space for someone to decompress and use sensory tools (Seckman, Paun, Heipp, Van Stee, Keels-Lowe, Beel, Delaney, 2017). Without proper sensory modulation, an individual may over-respond or under-respond to a stimulus (Seckman et al., 2017). If a stimulus is perceived inadequately, an individual may become agitated or aggressive (Purvis, McKenzie, Becker-Razuri, Cross, & Buckwalter, 2014). Sensory processing difficulties can negatively affect a persons capability to function in their everyday life (Schoen & Miller, 2018). If one of the senses is impaired, this affects a persons ability to learn so it is important to provide an environment conducive for a wide variety of individuals including persons with autism spectrum disorder (ASD), sensory processing disorder (SPD), attention deficit/hyperactivity disorder (ADHD), anxiety, and concussions (Noddings, 2017). Sensory stimulation is inherent at community facilities, such as the Lafayette Family YMCA. Thus, it is important to provide education on how the Lafayette Family YMCA can become more sensory friendly. Sensory friendly means adjusting an environment or programs auditory, visual, and olfactory stimulation levels to make it appropriate for persons with sensory processing difficulties (Autism Society of Minnesota, 2019). There are an abundance of programs that take place at the Lafayette Family YMCA such as Zumba, Pilates, Barre, swim lessons, and other numerous workout programs. The programs offered at the YMCA generate a large amount of sensory stimulation. Examples of such stimulation include bright overhead lights, music from fitness classes, noise from machines, and the smell from the pool. The YMCA staff would benefit from receiving education on the importance of a sensory room and sensory friendliness. By providing this education, it can allow the YMCA staff to think of ways the facility can become more sensory friendly and how creating a sensory room would be beneficial. EDUCATION & SENSORY FRIENDLINESS 6 In addition to this education, it is important to instruct the YMCA staff on the ways they can identify an individual who displays symptoms of poor sensory processing or modulation and how they can support this individual. Community-Participation Currently at the YMCA, there are no sensory friendly events or activities. It is essential that children with disabilities engage in community-based events early in their lives to promote motor development and social skills (Shields & Synnot, 2016). Children with disabilities often do not have the chance to engage in recreational activities due to a number of factors such as social isolation from peers, physical limitations, and a lack of community-organized activities specifically for those with disabilities (Ryan, Katsiyannis, Cadorette, Hodge, & Markham, 2014). Community-based programs can have health and behavioral benefits for people with autism or sensory processing difficulties (Jull & Mirenda, 2016). Thus, it is important to develop an inclusive program protocols so there are more locally based community resources for individuals with disabilities, specifically for those who experience symptoms of poor sensory processing. Education In addition to there being a lack of locally based programs for persons with disabilities, there is an increasing need for these programs to have staff members who are knowledgeable about working with persons who have diagnoses that involve sensory processing impairments (Ryan et al., 2014; Jull & Mirenda, 2016). The lack of staff training may prevent parents from enrolling their child(ren) with autism into a community-based program (Jull & Mirenda, 2016). Occupational therapists along with healthcare professionals from other disciplines need to assist community fitness staff by providing them with the education and training they need in order to EDUCATION & SENSORY FRIENDLINESS 7 implement safe and effective programs for children with disabilities (Fragala-Pinkham, Haley, & Goodgold, 2006). Community organizations are beginning to understand the importance of making accommodations for individuals with sensory processing difficulties. The occupations of an individual can be restricted if there is a lack of community-based programs for those with sensory difficulties or a lack of community staff understanding regarding sensory problems (Silverman & Tyszka, 2017). It is crucial to provide education to community staff on the importance of the sensory system so that persons experiencing sensory impairments feel more comfortable and less agitated while engaging in community occupations, such as working out at the YMCA (Kalimullin et al., 2016). Parents who have children with sensory processing problems identified that when visiting a community-based setting, it is important to have staff who are educated on the sensory system so they understand the needs of the family (Silverman & Tyszka, 2017). In addition, parents who have a child with autism expressed an enhanced sense of well-being when they attend sensory friendly events (Silverman & Tyszka, 2017). By providing education to community staff members, the staff can feel more comfortable and confident interacting with individuals who may be experiencing sensory regulation difficulties. Providing education on the sensory systems can allow community staff to be comfortable leading sensory friendly events. Therefore, it is important to educate YMCA staff on the importance of the sensory systems and sensory processing so they can better serve the persons in their community. Occupational Therapy Practice Areas Occupational therapists who work in traditional settings may work in areas such as skilled nursing facilities, hospitals, outpatient facilities, and within the school system. Occupational therapists who are practicing in the more traditional settings often educate their EDUCATION & SENSORY FRIENDLINESS 8 clients on the importance of engaging in the community in order to build social support and maintain overall health and wellness. Although occupational therapists provide recommendations for ways to partake in community events, an individual may not follow through. Occupational therapists are helping address this issue by expanding their area of practice and working in more non-traditional settings. One such area is in community health and wellness centers. Through this project, a more traditional outpatient based occupational therapy practice area (Franciscan Health) coincides with an emerging community health and wellness practice area (YMCA). Together, the Lafayette Family YMCA and Franciscan Health can promote health and wellness within their community and help the community members continue to engage in meaningful occupations. Kawa Model The model that will help guide this project is the Kawa model. The focus of the Kawa model is to enable and enhance ones own life flow (Iwama, Thomson, & MacDonald, 2009). According to the Kawa model, context plays a large role in determining the function of an individuals occupation (Iwama et al., 2009). The model uses a river to depict an individuals life flow with the overall goal of the individual to have an unimpeded life flow (Iwama et al., 2009). The upstream of the river depicts ones past while the downstream depicts ones future (Iwama et al., 2009). The rocks within the model depict ones own barriers in life (Iwama et al., 2009). Specific circumstances can impede ones life flow and cause rocks to build within the river (Iwama et al., 2009). Occupational therapy plays a role in helping eliminate the rocks or barriers to create space within the river or environment in order to increase an individuals life flow or occupational performance. Within the Lafayette Family YMCA, there is a lack of events for EDUCATION & SENSORY FRIENDLINESS 9 individuals who experience problems with sensory processing. The lack of sensory friendly events for those with sensory processing difficulties at the Lafayette Family YMCA may impede ones life flow. A possible reason for the lack of sensory friendly events at the YMCA may be due to the YMCA staff not understanding what an individual with sensory processing difficulties face. Through this doctoral capstone project, the barriers or rocks the YMCA staff face in regards to knowledge about the sensory system will be identified. Educational sessions will take place to help YMCA staff members overcome these barriers. Furthermore, the barriers of creating a sensory friendly program within the YMCA will be identified and addressed through research, education, and creating a program protocol. Theory of Reasoned Action The theory that will help guide this project is the Theory of Reasoned Action (TRA). TRA assumes that two constructs guide a persons behavioral intention (Dippel, Hanson, McMahon, Griese, & Kenyon, 2017). The first construct is attitude, which is a positive or negative feeling attached to a specific behavior (Dippel et al., 2017). The second construct is subjective norms, which are perceptions of social norms and the persons incentive to adhere to these normative beliefs (Dippel et al., 2017). By utilizing the TRA, the YMCA staff will gain a better understanding of the sensory system through education on the senses and diagnoses that involve accompanying sensory processing difficulties. The YMCA staff will learn how to identify someone who may be experiencing sensory processing difficulties and learn strategies as to how they can help them in the YMCA. Currently, the YMCA staff may have negative feelings and perceive those with sensory regulation difficulties as against the social norms. However, by gaining an understanding of the sensory system, the YMCA staff will know how to make accommodations for YMCA EDUCATION & SENSORY FRIENDLINESS 10 members with sensory regulation difficulties. Additionally, the YMCA staff may tune into their own sensory system and make positive health adjustments in their own lives. Screening/Evaluation Without having a clear description of need, it is almost impossible to objectively evaluate and develop a justifiable plan (Watkins & Kavale, 2014). To obtain a clear understanding of the needs of Franciscan Health and the Lafayette Family YMCA, a needs assessment was conducted which consisted of qualitative interviews, observations, and surveys. Assessments Interviews. Qualitative, face-to-face interviews occurred during the first two weeks of the project and took place with Franciscan Health and YMCA staff. Interviews with Franciscan Health staff consisted of talking with management as well as occupational, physical, and speech therapists. The interviews with YMCA staff involved talking with management, wellness coaches, and instructors. Wellness coaches at the YMCA are in charge of helping members with equipment, cleaning the workout area, and ensuring members are using equipment appropriately. The instructors at the YMCA are responsible for running different fitness programs through the YMCA such as yoga or Pilates. Interview questions included asking personnel: What are the needs of the facility and what can be done to meet those needs? Observations. In addition to interviews, qualitative observations of the YMCA workout center/classes and Franciscan Health therapy sessions took place throughout the project. Observations at the YMCA consisted of observing the workout floor as well as fitness classes. Observing at Franciscan Health consisted of shadowing an occupational, speech, or physical therapist and learning more about the therapy process and equipment used to help treat clients. Observations took place in multiple settings: acute care, neonatal intensive care unit, EDUCATION & SENSORY FRIENDLINESS 11 rehabilitation unit, and outpatient. A majority of the observations occurred in the pediatric and adult outpatient setting. Surveys. Lastly, qualitative surveys were distributed to YMCA wellness coaches to gain an understanding of their knowledge regarding the sensory system. Additional questions were asked such as willingness to take a guided tour of the Franciscan Health building (See Appendix A). Assessment Results Interviews. The staff from Franciscan Health stated that it would be beneficial to provide education to the YMCA staff on how the facility can become more sensory friendly. The staff mentioned that the YMCA has a lot of sensory stimulation, for example, loud music from fitness classes. Franciscan Health staff also mentioned that it would be helpful to have a better understanding of what the YMCA offers and how the staff can relay this information to their clients. The YMCA staff, specifically the wellness coaches, wanted to learn more about the services offered through Franciscan Health. By understanding, the services offered through Franciscan Health, the YMCA staff could help their members by adequately answering questions regarding the services Franciscan Health offers. Additionally, some of the instructors at the YMCA wanted to learn ways to adapt their classes to help prevent injury. Observations. While observing in the gym area at the YMCA, the evening hours were much busier and louder than during the morning hours. During exercise classes, observations of program adaptability, intensity, and body mechanics of participants took place. While observing at Franciscan Health, the DCE student gained a better understanding of diagnoses and treatment EDUCATION & SENSORY FRIENDLINESS 12 interventions from various therapists. Additionally, the DCE student learned how to address and treat individuals with sensory processing difficulties Surveys. In total, 12 wellness coaches from the YMCA completed the survey. When participants were asked if they understood the term sensory friendly, the results were as follows: disagree (16.7%), neutral (16.7%), agree (41.7%), and strongly agree (25%). When asked to define the term sensory friendly a majority of the participants included phrases that involved decreasing the light or sound of an area. One participant stated that sensory friendly refers to Adapting to others special needs when it comes to sound & visuals of the space. Another participant provided this definition, (An) environment that is sensitive to personal experience or disorder, considerate of all. When participants were asked if they were familiar with what a sensory room was, a majority of participants (75%) said yes, they were familiar. Although participants mentioned they were familiar with a sensory room and had a general understanding of the term sensory friendliness, 75% of participants said they had received no educational background on diagnoses that involve sensory processing difficulties. Additionally, more than half of the participants (67.7%) stated that they had not worked with anyone who was experiencing sensory processing impairments. Almost the entire sample (91.6%) said an educational presentation on the sensory systems would be helpful and that they would attend a tour of the Franciscan Health building. When asked what diagnoses would be helpful to learn more information on, autism was the number one diagnosis that participants listed. Other diagnoses participants listed included down syndrome, schizophrenia, and epilepsy. Implementation EDUCATION & SENSORY FRIENDLINESS 13 In order to meet the needs of Franciscan Health, the Lafayette Family YMCA, and the needs of the community, several projects took place. The projects involved giving presentations on the sensory systems and sensory processing, developing a YMCA exercise class guide for Franciscan Health therapists, leading tours of Franciscan Health for YMCA wellness coaches, and developing a sensory friendly program outline for the YMCA. Presentations To address the need for YMCA staff education on sensory friendliness, interactive PowerPoint presentations took place. In addition to the presentations for the YMCA staff, presentations on the sensory systems and sensory processing also occurred within the community. E-mails were sent to organizations within the West Lafayette and Lafayette, IN area inquiring about their interest in a presentation on sensory processing geared toward their organization. Two organizations responded with interest in a presentation: Kiddie Kollege and the St. Elizabeth School of Nursing. Kiddie Kollege is a preschool and childcare center for infants through kindergarten-aged children. The St. Elizabeth School of Nursing is associated with Franciscan Health and requested a presentation on the sensory systems and sensory processing for one of their nursing classes. YMCA. The Lafayette Family YMCA wellness coaches expressed interest in attending a presentation on the sensory systems and sensory processing. Five presentations, lasting 60minutes each, took place in the YMCA staff conference room. There were multiple times and sessions offered to make it easier for the wellness coaches to attend the presentation. The topics of the presentation included: information on the eight sensory systems (visual, auditory, gustatory, olfactory, tactile, proprioception, vestibular, interoception), what to expect if an individual has a sensory processing impairment, and information on how the sensory systems EDUCATION & SENSORY FRIENDLINESS 14 relate to being a wellness coach at the YMCA. Throughout the PowerPoint presentations, videos and interactive labs took place to help engage the attendees. Kiddie Kollege. One 60-minute presentation took place on a weeknight at Kiddie Kollege for their staff. Twelve staff members attended the presentation. The topics of the presentation included: information on the eight sensory systems (visual, auditory, gustatory, olfactory, tactile, proprioception, vestibular, interoception), the development of the sensory systems, diagnoses that have common sensory processing impairments, and ways to implement sensory activities within the classroom. In addition to the PowerPoint presentation, the staff received a handout listing different sensory activities (See Appendix C). St. Elizabeth School of Nursing. A single two-hour presentation took place at St. Elizabeth School of Nursing during one of the nursing class sessions. In total seven students were in class for the presentation along with the professor. The topics of the presentation included: the eight sensory systems (visual, auditory, gustatory, olfactory, tactile, proprioception, vestibular, interoception), diagnoses that have associated sensory processing impairments, information on how the sensory systems relate to nursing, and a lab session for each of the senses. YMCA Exercise Class Guide A YMCA Exercise Class Guide was established for the Franciscan Health therapy team. The program guide explains fitness classes that occur through the YMCA. The researcher personally attended at least one session of each of the classes. Examples of such classes include yoga, Pilates, Tai Chi, Turbo Kick, Body Pump, Zumba, along with numerous other classes. Attending the programs in person allowed for personal feedback on the classes. The description of the classes included information on: cardio level, flexibility, strength, microphone use, light EDUCATION & SENSORY FRIENDLINESS 15 intensity, equipment use, and a personal statement regarding the overall intensity and workout environment. In addition, recommendations as to what patient populations the classes would be appropriate for were included in the program guide. Tours of Franciscan Health The YMCA staff, specifically the wellness coaches, wanted to learn more about the services offered through Franciscan Health. In order to accomplish this and help build the relationship between the Lafayette Family YMCA and Franciscan Health, tours were given to the YMCA staff of the Franciscan Health building. Several times and dates were available for the wellness coaches to attend a tour of the Franciscan Health building. The tours consisted of explaining the different therapy disciplines such as occupational, speech, and physical therapy along with the equipment and services offered through Franciscan Health. Sensory Friendly Program Outline The sensory friendly program outlines the specific steps and tools needed in order to carry out the program. To help write and establish this outline, the researcher visited the Jackson R. Lehman YMCA in Fort Wayne, IN. The Jackson R. Lehman YMCA has programs that are sensory friendly as well as programs that are for individuals with physical or cognitive impairments. In addition to the programs, the Jackson R. Lehman YMCA has a sensory room. The sensory room is free to use by any member of the community, an individual does not have to be a YMCA member to use the sensory room. During the visit, the director of adaptive services explained the programs in detail and provided a tour of the sensory room. A sensory friendly event was also attended so that a better understanding of how to develop the sensory friendly program specific to the Lafayette Family YMCA could be established. EDUCATION & SENSORY FRIENDLINESS 16 The sensory friendly program outline is titled Sensory Friendly Summer Bash. The outline provides a detailed description of what activities could take place during the event. Examples of the activities include arts and crafts, pool time, and open gym activities See Appendix F for entire program outline. Outcomes Presentations Overall, the presentations received positive feedback. The presentations allowed individuals from community organizations to learn more about the sensory systems and sensory processing. YMCA. After the presentation, a post-survey was administered to the YMCA staff (See Appendix B). In total, nine YMCA staff attended the presentations. Participants were asked to rate their understanding of the term sensory friendly with 44.4% agreeing and 55.6% strongly agreeing that they understand the term sensory friendly. Respondents were asked if they had, a general understanding of ways they could help someone with a sensory processing impairment at the YMCA, 55.6% strongly agreed while 44.4% agreed with this statement. The YMCA staff agreed (11%) or strongly agreed (89%) that the presentation was useful. The respondents rated the overall quality of the presentation as excellent (89%) or very good (11%). In general, participants liked the interactive labs that took place throughout the lecture along with watching the videos. For example, one participant stated, The examples/labs made it easier to understand how someone who is sensory impaired feels and what they go through. Another participant stated, (I liked) the activities that broke up the lecture and they gave me a better understanding of the concept. When asked about ways to improve the presentation, the EDUCATION & SENSORY FRIENDLINESS 17 participants did not give any recommendations and stated that the presentation was well done. For example, a participant stated, Couldnt change much, very good delivery and content. Kiddie Kollege. After the presentation, the 12 attendees completed a post-survey to provide feedback on the presentation (See Appendix D). All of the participants (100%) either agreed or strongly agreed with the following statements: I understand what the term sensory friendly means; I understand what difficulties an individual with autism, sensory processing disorder, or ADHD may face; I have a general understanding of sensory strategies I can implement within the classroom. A majority (66.7%) of participants strongly agreed or agreed (33%) that they understood the purpose of a sensory room. When asked if they found this presentation useful, 41.7% of respondents agreed while 58.3% strongly agreed. Overall, respondents rated the presentation good (16.7%), very good (58.3%), or excellent (25%). When participants were asked what they liked about the presentation, a majority of people stated it was informative and that the classroom activity handout was helpful. One participant stated, It was very informative, loved the visuals. Another participant stated, It was very concise and easy to understand. I also felt like I could ask questions. When asked how the presentation could be improved, participants stated that it would have been helpful to bring in toys that stimulate the sensory system or complete a sensory activity. For example, one respondent stated, It would be great to have some physical toys to touch, see, and play with. St. Elizabeth School of Nursing. A post-survey was administered to the seven students and one professor after the presentation (See Appendix E). A majority of participants (75%) strongly agreed while 25% agreed that they had a general understanding of ways to help an individual with a sensory processing impairment. When respondents were asked if the EDUCATION & SENSORY FRIENDLINESS 18 presentation was useful, 75% of participants strongly agreed and 25% agreed. Respondents rated the presentation as very good (12.5%) or excellent (87.5%). When asked about what the participants liked about the presentation, a majority of respondents liked the interactive labs, videos, and relating the information to the nursing field. One participant stated, I liked how you included how it related to nursing and what we can do. I also loved the interactive activities that helped me stay engaged. When asked about what could be improved with the presentation, participants stated that small group work could be beneficial as well as slowing down when talking about the information. One participant stated, Slow down a little but it was great! YMCA Exercise Class Guide A copy of the YMCA Exercise Class Guide is available for all Franciscan Health therapists on the shared drive located on all Franciscan Health computers. Feedback regarding the guide was received after explaining the guide to four therapists in the Franciscan Health outpatient facility. All of the therapists agreed the guide would be helpful because they do not have the time to personally attend or observe the exercise classes and therefore cannot make recommendations as to what exercise class may be appropriate for a client. Thus, the Franciscan Health therapists found the guide helpful in recommending community involvement for a client post discharge from outpatient therapy. Tours of Franciscan Health Feedback from the YMCA staff about the tour was gained by asking the question; Did you find the tour useful? All of the twelve YMCA staff who attended the tours stated the tour was useful. Some of the staff said that it was helpful to gain a better understanding of the Franciscan Health building and the services offered. A few of the staff mentioned that the tour EDUCATION & SENSORY FRIENDLINESS 19 would also allow them to better answer questions that YMCA members ask regarding the services offered through Franciscan Health. Overall, the tours helped to establish a connection between the two organizations by introducing YMCA staff to members of the Franciscan Health team. It also provided the opportunity for the YMCA staff to ask questions regarding Franciscan Health. Sensory Friendly Program Outline The Sensory Friendly Program Outline was explained to the YMCA wellness coach manager. A review of the outline was provided and questions were answered regarding the feasibility of a sensory friendly program at the Lafayette Family YMCA in the future. The YMCA wellness coach manager stated the outline was helpful and it would lay the foundation for a sensory friendly event in the future. Project Modifications Based on feedback from the Kiddie Kollege presentation, it would be beneficial to have a lab portion alongside the presentation. The lab portion could consist of bringing in sensory items such as a weighted blanket, sensory bin, or a fidget cube. The School of Nursing presentation lasted two hours so it would be beneficial to modify the presentation to include multiple short breaks so the students remain engaged. The YMCA presentation received excellent feedback and attendees did not recommend any changes. The YMCA offers new exercise classes on a regular basis. In the future, the new exercise classes will need to be added to the YMCA Exercise Program Guide. The guided tours of Franciscan Health went well and do not require any modifications. The Sensory Friendly Program Outline does not currently require any modifications but it can be modified in the future, depending on what sensory friendly event the Lafayette Family YMCA hosts. EDUCATION & SENSORY FRIENDLINESS 20 Goal Attainment Scale A goal attainment scale was created during the beginning of the DCE project to measure the completion of projects (See Appendix G). The goal attainment scale included the same goals that were outlined within the memorandum of understanding. The memorandum of understanding is a document that was created and signed by the researcher, faculty advisor, and site supervisor stating the goals, objectives, and outline of the DCE project. The first goal regarding the tours of Franciscan Health was rated a +1 because the tours were given and good feedback was received from YMCA staff. The second goal concerning the sensory presentations was rated a +2 for much more than expected. The sensory presentations were given and a majority of presentations were rated excellent. Creating a sensory friendly protocol was the third goal and was rated a 0 for expected outcome. Unfortunately, due to time, the sensory friendly program could not be implemented. Lastly, the fourth goal regarding the YMCA exercise program guide was rated a 0 for expected outcome. For this goal, I was unable to provide direct education about the program guide to all therapists but my supervisors will provide the education a few weeks after the completion of the DCE project. Quality Improvement Ongoing quality improvement will continue to occur after the completion of this DCE project. The St. Elizabeth School of Nursing presentation will continue to be presented to the nursing students, once during the fall and once during the winter semesters. An occupational therapist at Franciscan Health will lead the presentations for the nursing students and will continue to use the PowerPoint presentation and labs created during this DCE project. The Kiddie Kollege presentation and handout was e-mailed to the director of Kiddie Kollege so that the information can be shared with future staff. For the YMCA presentations, one of Franciscan EDUCATION & SENSORY FRIENDLINESS 21 Healths supervisors attended the presentation. The supervisor can continue to give presentations in the future to other YMCA staff as needed. In addition, the YMCA staff who have already received the education on the sensory systems can discuss information learned with coworkers who did not have the chance to attend one of the presentations. The YMCA exercise class guide was created on a Microsoft Word document, the classes are listed in alphabetical order, and changes can be easily made to the document. Thus, if there are any changes in exercise classes offered by the Lafayette Family YMCA, therapists can update and modify the already existing guide as needed. Lastly, the sensory friendly program outline will provide a guide for the Lafayette Family YMCA in creating their own sensory friendly event in the future. As a result of this DCE experience, the Franciscan Health staff have agreed to further collaborate with the YMCA staff to assist with the development and implementation of a sensory friendly event. Dissemination This DCE student presented the project outcomes to Franciscan Health management team during a meeting where a brief presentation over the project outcomes was given. This allowed time for questions regarding the project and helped Franciscan Health management brainstorm ideas as to how the project could be expanded upon in the future. Unfortunately, I was unable to disseminate my project findings to the entire Franciscan Health therapy team due to a miscommunication in meeting time. However, my supervisors during the DCE project will be disseminating the information gathered during the project to all therapy employees a few weeks after the completion of this project. All of the information collected over the length of this DCE project is on Franciscan Healths shared file drive. Examples of such information include the multiple PowerPoints, the EDUCATION & SENSORY FRIENDLINESS 22 surveys distributed throughout the project, articles used while collecting research, the YMCA exercise class guide, information on how to conduct the tours of Franciscan Health, the sensory friendly program outline, and a document that provides a brief description of every task completed during the DCE project. All Franciscan Health employees or students have access to the shared file drive. The presentations, YMCA program guide, and sensory friendly program outline were discussed in person and e-mailed to the Lafayette Family YMCA wellness coach manager. The YMCA presentation on the sensory systems and sensory processing was also e-mailed to the Fort Wayne YMCA director of adaptive services. The director of adaptive services stated that some of the information from the PowerPoint would be shared during YMCA staff training at the Fort Wayne YMCAs. After the conclusion of this project, the goal is to disseminate the information learned to the Indiana occupational therapy association conference or submit to the sensory integration and processing special interest section (SIS). Societal Needs There is an increasing need for program staff to be knowledgeable about working with persons who have diagnoses that involve sensory processing impairments (Ryan et al., 2014; Jull & Mirenda, 2016). This DCE student developed and implemented presentations regarding sensory processing to the staff at the Lafayette Family YMCA, Kiddie Kollege, and the St. Elizabeth School of Nursing. Providing education on the sensory systems allowed these individuals to feel more comfortable working with persons who have sensory processing impairments. EDUCATION & SENSORY FRIENDLINESS 23 Parents who have a child with ASD express an enhanced sense of well-being when they attend sensory friendly events (Silverman & Tyszka, 2017). Based on this information, it can be assumed that most individuals who experience a sensory processing impairment may feel an enhanced sense of well-being while attending a sensory friendly event. This DCE student created a sensory friendly program outline for the Lafayette Family YMCA. Due to the Lafayette Family YMCA being a new facility and still organizing events/classes, the program could not be implemented during the 14-week placement. However, the outline provides a reference for the Lafayette Family YMCA so that a sensory friendly event can be created in the future. Additionally, this provides an opportunity for a future DCE student to continue with this project. It is important for clients to maintain an active lifestyle post discharge in order to maintain overall health and wellness. The clients receive a three-month free membership to the YMCA after discharge from outpatient therapy, which helps promote overall health and wellness. There are a variety of classes the Lafayette Family YMCA offers with varying levels of difficulty. This DCE student created an exercise class guide that can help therapists refer their clients to the classes that will best meet the clients needs. Staff Development Staff development took place in the variety of different ways. The presentations on the sensory systems and sensory processing at Kiddie Kollege and the YMCA allowed the staff from both organizations to learn more about an unfamiliar topic, relate it to their own field of work, and thus improve the services they provide to all people. The presentation for the St. Elizabeth School of Nursing allowed the students to learn more about an unfamiliar topic in hopes to impact their future practice. Staff development at Franciscan Health took place through interacting with therapists and managers on a weekly basis and explaining the purpose of the EDUCATION & SENSORY FRIENDLINESS 24 DCE project. By explaining the purpose behind the DCE, the Franciscan Health staff brainstormed ideas as to how the project could expand in the future and lead to changes in service delivery. For example, by researching and explaining the purpose of the DCE, this lead Franciscan Health management team to contemplate becoming an autism certified center. After consideration, becoming an autism certified center is now a part of the hospitals five-year plan. Overall Learning Communication Throughout the entire DCE project, it was important to express myself through written, oral, and nonverbal communication with clients, staff, healthcare providers, and community members. Written communication occurred daily through e-mails. E-mails were sent to community organizations, supervisors, Franciscan Health/YMCA staff, and other public entities. During written communication, it was important to be clear and concise. With written communication, it is imperative that whoever is receiving the message interprets the meaning in the way that it was intended. It was important to stay up to date on written e-mail correspondence so that the DCE project could progress. Oral communication was one of the most important pieces of communication throughout the DCE process. On a daily basis, I interacted with YMCA staff and members as well as Franciscan Health staff and clients. Oral communication was vital during meetings and presentations. Using oral communication, I was able to effectively explain the purpose of my DCE project to others including the YMCA staff, the Franciscan Health staff, friends, or family. When talking directly with others, it was important to be aware of non-verbal communication. I used non-verbal communication throughout my DCE project so that I could accurately judge if someone understood the information I was providing. I also had to be aware of my own facial EDUCATION & SENSORY FRIENDLINESS 25 expressions during presentations, meetings, observing treatment sessions, and when communicating with staff. Some projects required the use of all three forms of communication. For example, during the presentations, written, oral, and nonverbal communication were all extremely important. The written information on the PowerPoint slides had to be clear and concise. Oral communication was important when interacting with the persons who attended the presentations and while answering questions. Lastly, nonverbal communication took place by both noticing the facial expressions of the persons receiving the presentation as well as my own facial expressions. I was able to adjust my presentation based on the body language and facial expressions of the individuals in the audience. Leadership Leadership skills such as accountability, communication, flexibility, and commitment were improved throughout the entirety of this project. From the beginning of the DCE, I had to hold myself accountable and ensure that I finish projects in a timely manner. A part of this accountability was ensuring that I communicated with supervisors and management staff. Communication with Franciscan Health and YMCA staff occurred on a daily basis. Whether the communication was in person, during presentations, or via e-mail, it was important to effectively express my thoughts and ideas. It was imperative to remain flexible in order to meet the needs of both Franciscan Health and the Lafayette Family YMCA. When delivering the presentations and guiding tours, I had to remain flexible with both dates and times. It was also important to remain flexible when attending the exercise programs at the YMCA due to the variety of times the classes take place. EDUCATION & SENSORY FRIENDLINESS 26 It was initially difficult to set up meetings with the YMCA staff, so I had to remain flexible and patient during the first few weeks. Lastly, I was committed to this project. The entire project is something that I am passionate about. I enjoyed discussing and sharing information regarding the sensory systems and sensory processing with individuals within the community. I have improved leadership skills greatly since starting the DCE project. Overall, the entirety of the DCE project provided opportunities to develop as a leader, which will be extremely helpful in the future as an occupational therapist. Advocacy Advocating for occupational therapy occurred more often than I thought it would have throughout this project. I realized that after explaining the purpose of my DCE to whomever, not many people understood what occupational therapists do on a daily basis. With the YMCA staff, nursing students, and Kiddie Kollege employees, I had to explain the importance of occupational therapy. Very few people knew that occupational therapists work with individuals who experience sensory processing impairments. Not only did I advocate for occupational therapy within my DCE site, but I also advocated for occupational therapy when explaining my project to friends and family. It is important to advocate for your profession and I feel I did this on a daily basis throughout the entirety of my project. I am happy that I had the ability to expand peoples knowledge of occupational therapy and provide them the opportunity to learn more about this profession. EDUCATION & SENSORY FRIENDLINESS 27 References Autism Society of Minnesota. (2019). AuSMs guide to sensory-friendly Minnesota 2019. Retrieved from: https://ausm.org/images/docs/Summer_Programs/2019SFGuideWEB.pdf Dippel, E.A., Hanson, J.D., McMahon, T.R., Griese, E.R., & Kenyon, D.B. (2017). Applying the theory of reasoned action to understanding pregnancy with American Indian communities. Maternal Child Health Journal, 21, 1449-1456. doi: 10.1007/s10995-0172262-7 Fragala-Pinkham, M.A., Haley, S.M., & Goodgold, S. (2006). Evaluation of a community-based group fitness program for children with disabilities. Pediatric Physical Therapy, 18, 159167. Iwama, M., Thomson, N., & MacDonald, R. (2009). The Kawa model: The power of culturally responsive occupational therapy. Disability and Rehabilitation, 31(14), 1125-1135. doi: 10.1080/09638280902773711 Jull, S., & Mirenda, P. (2016). Effects of a staff training program on community instructors ability to teach swimming skills to children with autism. Journal of Positive Behavior Interventions, 18(1), 29-40. doi: 10.1177/1098300715576797 Kalimullin, A.M., Kuvaldina, E.A., Koinova-Zoellner, J. (2016). Adolescents self-regulation development via the sensory room system. International Journal of Environmental & Science Education, 11(5), 663-671. Noddings, A. (2017). Classroom solutions for sensory-sensitive students. Montessori Life, 45-49. Purvis, K.B., McKenzie, L.B., Becker Razuri, E., Cross, D.R., & Buckwalter, K. (2014). A trustbased intervention for complex developmental trauma: A case study from a residential treatment center. Child & Adolescent Social Work Journal, 31(4), 355-368. EDUCATION & SENSORY FRIENDLINESS 28 Ryan, J.B., Katsiyannis, A., Cadorette, D., Hodge, J., Markham, M. (2014). Establishing adaptive sports programs for youth with moderate to severe disabilities. Preventing School Failure, 58(1), 32-41. Schoen, S.A. & Miller, L.J. (2018). A retroscpecitve pre-post treatment study of occupational therapy intervention for children with sensory processing challenges. The Open Journal of Occupational Therapy, 6(1). doi: 10.15453/2168-6408.1367 Seckman, A., Paun, O., Heipp, B., Van Stee, M., Keels-Lowe, V., Beel, F., Delaney, K.R. (2017). Evaluation of the use of a sensory room on an inpatient unit and its impact on restraint and prevention. Journal of Child and Adolescent Psychiatric Nursing, 30, 90-97. doi: 10.1111/jcap.12174 Shields, N., & Synnot, A. (2016). Perceived barriers and facilitators to participation in physical activity for children with disability: A qualitative study. BMC Pediatrics, 16(1), 9. doi: 10.1186/s12887-016-0544-7 Silverman, F., & Tyszka, A. C. (2017). Centennial TopicsSupporting participation for children with sensory processing needs and their families: Community-based action research. American Journal of Occupational Therapy, 71, 7104100010. https://doi.org/10.5014/ajot.2017.025544 Watkins, R., & Kavale, J. (2014). Needs: Defining what you are assessing. New Directions for Evaluation, 144, 1931. doi: 10.1002/ev.20100 EDUCATION & SENSORY FRIENDLINESS 29 Appendix A Pre-Survey for YMCA Staff 1) Please rate your response to the following statement: I understand what the term sensory friendly means: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree 2) In your own words, how would you describe the term, sensory friendly? 3) Have you worked with an individual who displayed sensitivity to noise, light, sound, touch, or smell? 4) Do you know what a sensory room is? 5) Have you received any educational training on diagnoses that can involve sensory symptoms such as autism, sensory processing disorders, or concussions? 6) Would attending an educational session at the YMCA about diagnoses involving sensory symptoms be helpful? 7) Are there any specific diagnoses you would like to learn more information on? 8) Would you attend a guided tour of the Franciscan Health building? 9) Please list questions or comments below EDUCATION & SENSORY FRIENDLINESS 30 Appendix B Post-Survey for YMCA Staff I understand what the term sensory friendly means: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree I have a general understanding of ways I can help an individual at the YMCA with a sensory processing impairment: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree I found this presentation useful: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree How would you rate the presentation? 1 Poor 2 Fair 3 Good 4 Very good 5 Excellent What did you like about the presentation? ______________________________________________________________________________ What improvements could be made to this presentation? ______________________________________________________________________________ EDUCATION & SENSORY FRIENDLINESS Appendix C Handout for Kiddie Kollege 31 EDUCATION & SENSORY FRIENDLINESS Appendix D Post-Survey for Kiddie Kollege 1) Please rate your response to the following statements: I understand what the term sensory friendly means: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree I understand what sensory processing difficulties an individual with autism spectrum disorder may face: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree I understand what sensory processing difficulties an individual with sensory processing disorder may face: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree I understand what sensory processing difficulties an individual with ADHD may face: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree I have a general understanding of sensory activities I can implement within the classroom: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree 32 EDUCATION & SENSORY FRIENDLINESS 33 I have a general understanding of what a sensory room is: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree I found this presentation useful: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree How would you rate the presentation? 1 Poor 2 Fair 3 Good 4 Very good 5 Excellent What did you like about the presentation? ______________________________________________________________________________ ______________________________________________________________________________ What improvements could be made to this presentation? ______________________________________________________________________________ ______________________________________________________________________________ EDUCATION & SENSORY FRIENDLINESS 34 Appendix E Post-Survey for St. Elizabeth School of Nursing Please circle your response to the following questions: I have a general understanding of ways I can help an individual with a sensory processing impairment: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree I found this presentation useful: 1 Strongly Disagree 2 Disagree 3 Neutral 4 Agree 5 Strongly Agree How would you rate the presentation? 1 Poor 2 Fair 3 Good 4 Very good 5 Excellent What did you like about the presentation? ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ What improvements could be made to this presentation? ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ EDUCATION & SENSORY FRIENDLINESS 35 Appendix F Sensory Friendly Summer Bash Pool time o Lifeguards do not use whistles (unless emergency) o Dont turn on play features to ensure appropriate environment for all o Do not play music o Offer goggles (if possible) for children who may not like water in eyes o Turn lights down o Provide families the option of allowing them to bring small pool toys o Ensure no water aerobics programs will take place and limit the number of adults who may come in to lap swim Arts & Crafts o Could take place in multi-generational room o Consider this the quiet/calming area that has less sensory stimulation; dim lights o Craft Ideas Tabletop Sensory Box A bin filled with water include toys such as boats, fish, cups A bin filled with sand hide objects such as starfish, seashells Finger-painting station paper & finger-paints (smocks, newspaper, stamps, and paintbrushes) Have puzzles, books, board games, blankets, pillows Open Gym o Louder and more sensory stimulating environment o Offer basketball in one area o Game of twister o Parachute Game o Area for children to run around Other important notes o Do not use PA system during this time o Limit the number of participants (5 families per area) o Have extra staff on hand to help with events EDUCATION & SENSORY FRIENDLINESS 36 Appendix G Goal Attainment Scale GOAL ATTAINMENT SCALE MADDY MAHONEY Goal #1: Tours for YMCA Staff -2 Much Less Than Expected Do not give tours or provide education Provide tours & education -1 Somewhat Less Than Expected 0 Expected Outcome +1 Somewhat More Than Expected Receive negative feedback from YMCA staff regarding tours Provide tours & education Provide tours & education Receive good feedback from YMCA staff regarding tours +2 Much More Than Expected Provide tours & education Receive excellent feedback from YMCA staff regarding tours Goal #2: Presentations on the sensory systems Do not provide presentations Goal #3: Create protocol for sensory friendly programs for YMCA Do not create protocol Goal #4: Create YMCA exercise program guide for Franciscan Health therapists Do not create program guide Provide presentations & rated poorly on post-survey Create protocol but do not educate others on purpose or importance Create program guide but only attend 50% of the YMCA exercise classes in person Provide presentations & rated good on post-survey Create protocol & explain purpose/importance of future implementation Beginning stages of protocol implementation Create program guide and attend 90% of the YMCA exercise classes in person Provide presentations & rated very good on post-surveys Provide presentations & rated excellent on post-surveys Implement entire protocol Create program guide and attend 90% of the YMCA exercise classes in person Provide education to therapists on program guide Create program guide and attend 100% of the YMCA exercise classes in person Provide education to therapists on program guide  ...

... Pennwood Pals: A Pilot Program to Increase the Quality of Life of Hospice Home Residents Kristen Lundy 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: Julie Bednarski, OTD, MHS, OTR A Capstone Project Entitled Pennwood Pals: A Pilot Program to Increase the Quality of Life of Hospice Home Residents 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 Kristen Lundy 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 PENNWOOD PALS 1 Abstract Problem Statement: Individuals who are homeless and terminally ill experience a loss of meaningful occupation as their illness progresses (Ko & Nelson-Becker, 2014; Lyons et al., 2002). The holistic practice of occupational therapy (OT) allows OT practitioners to provide interventions to increase the quality of life for residents in hospice through engagement in meaningful occupation (Trump et al., 2004). Implementation: Pennwood Pals is a pen pal program between the Abbie Hunt Bryce Home hospice residence and a local senior apartment complex, Pennwood Place. Each week, participants received a list of suggested topics to discuss in their letters to promote life review. Letters were then delivered between corresponding pen pals for a total of six weeks. One Pennwood Place resident and three Abbie Hunt Bryce Home residents participated. Each Abbie Hunt Bryce Home participant took a pre- and post-test, the Missoula-VITAS Quality of Life Index (MVQoLI), to assess quality of life and program outcomes. Outcomes: Average scores increased by 1.2 points within the interpersonal dimension of the MVQoLI between the pre- and post-test, indicating that participants noted a higher importance and impact of interpersonal relationships on their quality of life after the program. When combining the positive feedback from participants with the increased MVQoLI score, it is evident that the program was effective in increasing quality of life of the hospice residents. Conclusion: OT practitioners have the skills and expertise to provide meaningful interventions to increase the quality of life of vulnerable populations in hospice care. PENNWOOD PALS 2 Pennwood Pals: A Pilot Program to Increase the Quality of Life of Hospice Home Residents The main component of this occupational therapy doctoral capstone experience is the creation and implementation of a social participation program to increase the quality of life of individuals receiving hospice care in a hospice residence. The social participation programming involves a pen pal letter exchange program between local older adult volunteers and the terminally ill residents of a hospice home. The following theoretical framework and literature review provided a basis for the creation of the program. The literature review focuses on occupational deprivation within the dying homeless population, occupational therapys role in working with this unique population, and the impact of life review and social participation on quality of life. Theoretical Framework The Canadian Model of Occupational Performance Engagement (CMOP-E), formally referred to as the Canadian Model of Occupational Performance (CMOP) before an expanding definition was added, was the theoretical basis supporting this capstone project. The CMOP-E is an occupation-based model that analyzes how occupational performance and engagement evolve from an interaction between the person, their environment, and the occupation itself (Cole & Tufano, 2008; Zhang, McCarthy, & Craik, 2008). Function and dysfunction occur as a result of balance or imbalance between the three components, so individuals who experience dysfunction have a decrease in occupational engagement and performance (Cole & Tufano, 2008). With the use of the CMOP-E to guide program development and implementation, the quality of life and human spirit of each hospice resident can improve through engagement in meaningful occupations during the final stages of life. PENNWOOD PALS 3 In addition to the CMOP-E, the psychodynamic theory acted as a guide for this capstone project. The psychodynamic theory is the only theory used within occupational therapy practice that addresses the emotional issues of each client (Cole & Tufano, 2008). While the physical aspect of terminal illness is important to address in hospice settings, a patients physical condition often cannot improve due to the progressive nature of many terminal diagnoses. However, the mentality and psychological well-being of each resident can remain intact throughout the entire end-of-life process. Psychological well-being and the clients sense of self can be challenged when faced with mortality. Therefore, it is important use a theory that addresses this specific human element of emotion to guide program development. A clients conscious sense of self, also known as the ego, is similar to the concept of human spiritualty used within the CMOP-E (Cole & Tufano, 2008). Literature Review Occupational Deprivation Individuals who are homeless, as well as individuals who are terminally ill and receiving hospice care, often experience loss of occupation as their illness progresses (Ko & NelsonBecker, 2014; Lyons et al., 2002; MacWilliams et al., 2014; Podymow, Turnbull, & Coyle, 2006). This progressive loss of meaningful occupation is known as occupational deprivation (Lyons et al., 2002). Despite health or socioeconomic status, older adults have distinct needs during the later stages of life related to psychosocial support, social participation, and engagement in occupations (Wren, 2016). If these needs are not met properly, occupational deprivation can occur (Wren, 2016). Occupational deprivation can negatively impact how an individual perceives his or her own health and well-being, which leads to a decreased quality of life. Many individuals with life- PENNWOOD PALS 4 threatening illnesses receiving hospice care report difficulties completing once-manageable daily tasks, which causes them to feel bored and isolated in their everyday lives (Lyons et al., 2002). In addition to feelings of boredom and isolation, these individuals also report experiencing a fear of dying anonymously or worrying that no one would know they had died (Ko & Nelson-Becker, 2014; Tobey et al., 2017). These fears likely derive from a lack of engagement in social participation occupations with friends, family, and the community (Fitzpatrick, 2017). Strong social supports are especially critical for individuals at the end of their lives to promote a peaceful and comfortable death experience (Boucher, Kuchibhatla, & Johnson, 2017). The most frequently unmet needs for older adults during the last stages of life are related to social participation, such as engagement in social relationships, leisure, and community life (MacWilliams, Bramwell, Brown, & OConnor, 2014; Turcotte, Carrier, Roy, & Levasseur, 2018). The Role of Occupational Therapy While physical rehabilitation may not always be plausible during end of life care, the unique holistic scope of occupational therapy practice allows practitioners the opportunity to provide treatment to increase the quality of remaining life for residents in hospice (Trump, Zahoransky, & Siebert, 2004). Occupational therapists recognize that providing interventions that encourage continued participation in meaningful occupations can provide both an outlet for self-expression and reflection, as well as a means for making the final stages of life peaceful as an individual prepares for death (Trump et al., 2004). Occupational therapists are pivotal members of the end of life healthcare team because they are able to use their expertise of the individuals living environment and greater community to foster social participation and increased quality of life (Turcotte et al., 2018). Occupational therapists are skilled in adapting the PENNWOOD PALS 5 task and environment to overcome barriers to social participation for clients in hospice (Turcotte et al., 2018). Interventions that not only support the physical functioning of hospice residents, but the cognitive, spiritual, and emotional functioning as well, are reportedly valuable to terminally ill individuals (Lyons et al., 2002). One such intervention is therapeutic life review through engagement in social participation. Life Review Through Social Participation Therapeutic life review can be used to address an individuals psychological and existential concerns about the dying process (Keall, Clayton, & Butow, 2015). It can improve quality of life by facilitating reflection and evaluation of ones life to find meaning and purpose as they face death with a sense of peace (Keall et al., 2015). Life review intervention activities have also been shown to effectively reduce feelings of depression, while increasing self-esteem and life satisfaction (Keall et al., 2015). It is important to foster involvement in social interactions with other members of society, also known as social participation, even during the final stages of life to promote an active and healthy aging process (Turcotte et al., 2018). One of the most commonly reported desires terminally ill patients have as they prepare for death is the strengthening of social relationships (Grewe, 2017). Greater social participation is associated with an increased quality of life and sense of well-being (Levasseur, Dubois, Genereux, Therrien, & Payette, 2015). Therefore, interventions that facilitate the life review process through engagement in social participation activities can improve quality of remaining life for individuals who are terminally ill. Pilot Program The program titled Pennwood Pals was a pen pal exchange program between residents of the Abbie Hunt Bryce Home and Pennwood Place apartments. The Abbie Hunt Bryce Home PENNWOOD PALS 6 is a non-profit, free of charge residential hospice for low-income or homeless individuals with no appropriate living accommodations to live out their final days. Pennwood Place is a low-income senior housing complex located next door to the Abbie Hunt Bryce Home. The eight-week program aimed to increase social participation and promote life review through the use of a letter exchange program to improve the quality of life of the Abbie Hunt Bryce Home residents. Needs Assessment Needs assessments are necessary to document current problems in order to prepare for improvement through program development (Bonnel & Smith, 2018). Important components of a needs assessment include both a literature review to gain a broad understanding of the problem through professional resources available, as well as a SWOT analysis to gain an understanding of the local problem specific to the organization at hand (Bonnel & Smith, 2018). Following these guidelines, the needs assessment for this program began with a review of the literature to examine the general needs of the target population through the lens of formally conducted studies, as previously noted. The literature review revealed that terminally ill homeless individuals often experience occupational deprivation and need interventions to provide the opportunity to engage in meaningful occupations to increase quality of remaining life (Ko & Nelson-Becker, 2014; Lyons et al., 2002; Wren, 2016). After a thorough literature review, the doctoral capstone student conducted a SWOT analysis utilizing information gathered from informal interviews with the two staff members, two on site personnel, and two residents of the hospice home resulting in a total number of six individuals. A list of questions used to guide these informal interviews can be viewed in Appendix A. Results of the SWOT analysis outlined the strengths, weaknesses, opportunities, and threats of the current programming offered at the hospice home. Strengths include a focus on quality of life and consistent monthly activities PENNWOOD PALS 7 planned and offered to residents. Weaknesses include a lack of partnership with individuals in the community for activities, as well as a lack of life review programming. The biggest opportunity for future programming was the proximity and availability of the Pennwood Place seniors to engage in activities with the hospice home residents. Finally, the main threat of activities at the hospice home was the nature of hospice itself. Many individuals are unable to complete activities that last for several weeks due to their terminal illnesses and uncertain futures. The completed SWOT analysis can be located in Appendix B. The Abbie Hunt Bryce Home is a non-profit organization whose mission is to serve the terminally ill homeless population. This type of non-traditional community setting is considered an emergent practice area within occupational therapy (Chow, 2015). Traditionally, hospice services are provided to individuals within an inpatient facility, their homes, or a skilled nursing facility (NHPCO, 2009). In more traditional medical settings such as skilled nursing or inpatient facilities, the primary focus of the needs assessment is on the physical needs of the patient (Wijk & Grimby, 2008). Once the patients physical needs are met, primarily through pain management, other psychological, social, or spiritual needs then arise (Wijk & Grimby, 2008). This is where the needs assessment at the Abbie Hunt Bryce Home differs from that of traditional hospice settings. At the Abbie Hunt Bryce Home, contracted hospice providers deliver the medical hospice services to the residents. Therefore, the primary focus of these hospice providers is on the physical needs of the residents. Since the physical needs of the residents are accounted for by the contracted hospice providers, the primary focus of a needs assessment within the facility is on the other needs relating to social, emotional, psychological, or spiritual factors. PENNWOOD PALS 8 Program Implementation Life Review Topics First, a review of the literature was conducted to determine an appropriate list of life review topics to discuss throughout the duration of the program. These topics included aspects from childhood and teenage years, education and young adulthood, work and career endeavors, family, hobbies and leisure, retirement, and other major life events (Boehlmeijer, Smit, & Cuijpers, 2003; Haber, 2006; Haight, 1988; Staudinger, 2001). Pennwood Place residents received a weekly flyer containing suggestions for the different life review topics of the week. The flyers encouraged participants to discuss the suggested topics from their personal view, and to ask questions regarding these suggested topics to their corresponding pen pal at the Abbie Hunt Bryce Home. The purpose of this activity was to provide a means of informal life review for the hospice residents. Marketing and Recruiting Participants Recruitment at Pennwood Place occurred via flyers and verbal announcements at weekly activities. Pennwood Place residents first learned of the program through the monthly newsletter. Participants were encouraged to inform the property manager of his or her interest in the program. Once initial interest was determined, residents then received frequent weekly reminders describing the program and what steps to take in order to participate. Recruitment efforts continued throughout the entire duration of the program due to low initial participation response from Pennwood Place residents. Letter Delivery Each Pennwood Place participant received topic suggestions for writing their initial introduction letter. Once the introductory letters were completed, the letters were delivered next PENNWOOD PALS 9 door to the Abbie Hunt Bryce Home. Each Abbie Hunt Bryce Home resident was offered the opportunity to participate in the pen pals program, and those interested were randomly assigned a pen pal. Each hospice resident was offered additional assistance with reading or writing their letters, if needed, to ensure that every resident was able to participate if they desired, regardless of their state of health. One participant took advantage of this offer and an average of one hour was spent with the resident each week to assist in letter writing. Once the Abbie Hunt Bryce Home residents completed their response letters, the letters were then delivered back to their respective Pennwood Place pen pal partner, along with a new list of topic suggestions for life review. The letter writing portion of the program continued for a total of six weeks with a total of four participants one from Pennwood Place and three from the Abbie Hunt Bryce Home. Throughout the three-month duration of the doctoral capstone experience, the average census of the Abbie Hunt Bryce Home was at about 60% of the 12-room capacity. This means that the average census at any given time during the three months was seven residents, so three participants equates to 43% of residents participating in the program. Each resident wrote and received anywhere from two to four letters, depending on the time it took to write a response letter. The typical time lapse between letters was one to two weeks. Missoula-VITAS Quality of Life Index Each participating Abbie Hunt Bryce Home hospice resident anonymously filled out the Missoula-VITAS Quality of Life Index (MVQoLI) as a pre-test. The MVQoLI is a tool designed specifically for use in palliative care and hospice settings (Namasango, Katabira, Karamagi, & Baguma, 2007). This 25-item tool breaks down quality of life into five dimensions including symptoms, function, interpersonal, well-being, and transcendence (Schwartz, Merriman, Reed, & Byock, 2005). The MVQoLI was found to have internal consistency, divergent validity, test- PENNWOOD PALS 10 retest stability, and relevance when used with the terminally ill population (Byock & Merriman, 1998; Schwartz et al., 2005). The scores of the MVQoLI were calculated so the pre-test and posttest trends could be compared to assess the program outcomes. The MVQoLI responses were kept anonymous in order to ensure participant privacy. The trends were assessed instead of individual outcomes to account for the possibility of participants passing away throughout the duration of the program rendering them unable to complete both a pre- and post-test, as well as to ensure the overall effectiveness of the program was being assessed versus individual participation. Leadership and Staff Development Leadership on behalf of the occupational therapy student was necessary throughout the implementation phase to ensure proper carry out of the program. Specific leadership skills such as communication, advocacy, organization, self-directed learning, flexibility, and constructive criticism and feedback were utilized to promote program success. Communication with key staff, on-site personnel, and potential participants was vital to provide education on the goals of the pen pals program in relation to occupational therapy to gain interest during recruitment. Constructive criticism and feedback were sought throughout all stages of program development to promote successful implementation of the program. Advocacy was necessary to highlight the need for occupational therapy and the specific social participation program at the Abbie Hunt Bryce Home. Throughout the development and implementation phases of the program, it was important to remain flexible and self-directed to allow for effective problem solving when potential barriers to success were present. Staff development was promoted throughout the creation and implementation of the program in several ways. Staff members were educated on the general scope of occupational PENNWOOD PALS 11 therapy practice, as well as the specific role of occupational therapy within hospice settings, to enhance their working knowledge of the profession. Additionally, staff members were educated on the specific occupations of social participation and the prevalence of occupational deprivation within the terminally ill homeless population. The benefits of life review and social participation, as well as information on how to promote life review during program implementation were shared with staff members to promote staff development. Program Discontinuation At the conclusion of the program, the participants were invited to an event held at the Abbie Hunt Bryce Home. This event was open to residents who did not participate in the pen pals program, as well, to increase participation outcomes and opportunities for social participation. At the event, residents of both facilities worked together to bake and decorate cookies and were encouraged to engage in conversation with their pen pals. A total of six residents attended the event two from Pennwood Place, three from Abbie Hunt Bryce Home, and one close friend of an Abbie Hunt Bryce Home resident. Each Abbie Hunt Bryce Home resident who participated in the pen pals program was then given the MVQoLI to complete once again as a post-test measure. Additionally, feedback was sought from each participant regarding the program. Participants expressed their desires for a longer program, continuation of correspondence with their pen pals, and opportunities to write to more pen pals in the future. Sustainability of the program was discussed with staff members and a detailed plan for continuation of the letter correspondence between the two facilities was created with tasks delegated to appropriate staff members. PENNWOOD PALS 12 Outcomes The pre-test and post-test scores of the MVQoLI were calculated using the excel spreadsheet provided by the creators of the tool (Byock and Merriman, n.d.). Each of the five dimensions of the MVQoLI feature two items for assessment, two items regarding satisfaction, and one item to measure importance (Byock & Merriman, n.d.). Assessment refers to the measurement of the actual circumstance itself, satisfaction refers to the level of acceptance on behalf of the resident, and importance measures the degree to which each dimension impacts ones overall quality of life (Byock & Merriman, n.d.). Once entered into the Excel spreadsheet, each response was given a numerical score to assist in overall scoring. The assessment items ranged from -2 to +2, satisfaction items ranged from -4 to +4, and importance items were scored from 1 to 5 (Byock & Merriman, n.d.). The total score within each dimension was calculated using these numerical figures, and a bar graph was created to demonstrate the results. The results of the pre-test can be viewed below in Table 1 and the bar graph of the average scores can be viewed in Figure 1. Table 1. MVQoLI Pre-Test Dimension Scores Participant 1 Participant 2 Participant 3 Averages Symptom 8 4 3.5 5.2 Function -3 25 13.5 11.8 Interpersonal 7.5 1.5 0 3 Well-Being 20 27.5 15 20.8 Transcendent 20 30 25 25 PENNWOOD PALS 13 MVQoLI Average Pre-Test Scores 30 Dimensional Subscores 25 20 15 10 5 0 Symptom Function Interpersonal Well-Being Transcendence Dimensions Figure 1. MVQoLI average pre-test scores. This figure illustrates the average pre-test scores of each dimension of the MVQoLI between the three participants. The positive numbers indicate an increase in quality of life of the resident and the negative numbers indicate a reduction, while the size of each dimension indicates the depth of the impact each item has on the resident (Byock & Merriman, n.d.). Each participant reported an overall increase in quality of life within each dimension apart from one resident who reported that their ability to physically function negatively impacted their quality of life, as seen in Table 1. Transcendence and well-being were most important and impactful to each resident, as reflected in the size and direction of each bar in Figure 1, and symptoms and interpersonal relationships had the smallest positive impact. The results of the post-test can be viewed below in Table 2 and the averages are illustrated in Figure 2. PENNWOOD PALS 14 Table 2. MVQoLI Post-Test Dimension Scores Participant 1 Participant 2 Participant 3 Averages Symptoms 9 4 3.5 5.3 Function -2.5 25 13.5 12 Interpersonal 10 2.5 0 4.2 Well-Being 20 27.5 15 20.8 Transcendence 20 30 25 25 MVQoLI Average Post-Test Scores 30 Dimensional Subscores 25 20 15 10 5 0 Symptoms Function Interpersonal Well-Being Transcendence Dimensions Figure 2. MVQoLI average post-test scores. This figure illustrates the average post-test scores of each dimension of the MVQoLI between the three participants. Fortunately, each Abbie Hunt Bryce Home resident who completed the pre-test was able to complete a post-test, as well. The individual participant responses are not matched between the pre-test and post-test to allow for anonymity, therefore individual dimensional score changes cannot be assessed. However, as shown in Table 2, the trends remained relatively unchanged. PENNWOOD PALS 15 Participants still reported that transcendence and well-being were the dimensions that held the greatest importance and impact on their quality of life, while the dimensions of function and interpersonal had the smallest impact. The average scores for the interpersonal category, however, increased from 3 to 4.2, indicating that since the pre-test, participants noted a higher importance and impact of interpersonal relationships on their quality of life. When comparing the positive feedback received via informal discussions during the discontinuation event with the increased average score on the interpersonal dimension of quality of life, a possible link can be made between the two outcomes. It can therefore be concluded that the pen pals program was effective in providing an outlet for social participation for the residents at the Abbie Hunt Bryce Home, and that this increased social participation had a positive impact on the overall quality of life of the residents. These findings support existing literature that states that individuals most frequently desire an increase in social participation near the end of life, and that engagement in social participation promotes increased quality of life (Grewe, 2017; Levasseur et al., 2015; Turcotte et al., 2018). Additionally, existing literature regarding the importance and effectiveness of occupational therapy interventions that focus on social, cognitive, and emotional factors, versus physical rehabilitation within end of life care is supported by these program outcomes. Response to Societal Needs Individuals who are homeless, as well as individuals who are terminally ill, experience a decrease in quality of life and social participation (Ko & Nelson-Becker, 2014; Podymow et al., 2006). This is especially true for those who fall into both categories (Lyons et al., 2002). There is a societal need for interventions to allow homeless individuals who are terminally ill to engage in meaningful occupations such as social participation to increase their quality of remaining life. This pen pal letter exchange program was created as a direct response to this need. The doctoral PENNWOOD PALS 16 capstone project provided a social participation intervention in the form of a pen pals program to the residents of the Abbie Hunt Bryce Home, a free hospice residence for terminally ill individuals with no other place to live out their final days. Studies show that engagement in social participation near the end of life can increase the quality of life for terminally ill individuals (Grewe, 2017; Turcotte et al., 2018). The outcomes of this pilot program support the findings of these studies; therefore, it can be said that this program effectively met the societal needs of the Abbie Hunt Bryce Home community. Overall Learning Communication and Client Education Communication and client education were vital components in ensuring the program ran smoothly from start to finish. Communication occurred with site staff and volunteers, board members consisting of community members and health providers, residents, and other occupational therapy student colleagues. Effective communication was key in the program design stage to select an appropriate site for the doctoral capstone experience, collaborate with staff personnel to create objectives and plan a program to meet the unique needs of the population, and to implement the program effectively with the help of site staff and volunteers. This communication took place verbally during meetings with staff members and residents, and nonverbally via written or electronic communication. Without the use of effective communication to coordinate a pen pals program between two separate buildings and two separate sets of residents and staff members, the program would not have been successful. The client throughout this doctoral capstone experience not only includes the individuals who participated in the pen pals program, but the other residents at the site, and staff and volunteers, as well. Staff and volunteers were educated on occupational therapys general scope PENNWOOD PALS 17 of practice, occupational therapys role within hospice settings, and the specific role of occupational therapy and the doctoral capstone program at the Abbie Hunt Bryce Home. Additionally, education to the staff and volunteers was provided on the concepts of occupational deprivation, social participation, and life review, and how the pen pals program aimed to use social participation and life review to decrease occupational deprivation within the residents at the Abbie Hunt Bryce Home. Residents of both sites were educated on all the aforementioned concepts, as well. In addition, residents were educated on the importance of engaging in social participation even at the end of life to increase life quality. This was done not only to gain interest and participation in the pen pals program, but to empower individuals to find ways to engage in meaningful social participation even outside of the program. All this education was done verbally with the aid of literature to cite the information provided. Leadership and Advocacy Leadership and advocacy skills are important when providing effective communication and education. In order to be a leader, one must first be confident in their knowledge and abilities to provide education and advocacy. Using literature on existing studies and peer reviewed information to support the staff and resident education topics facilitated a natural increase in confidence of the knowledge. Advocacy is crucial when acting as an outside consultant, especially for a site that does not currently employ occupational therapists like the Abbie Hunt Bryce Home. It was important to advocate for the profession of occupational therapy and how the holistic scope of practice allows practitioners to work with a wide variety of clients, in both traditional and emerging areas of practice. Without advocacy for the profession, occupation- PENNWOOD PALS 18 based programs, such as Pennwood Pals, would be unable to exist and provide the needed interventions to vulnerable populations, such as the residents of the Abbie Hunt Bryce Home. Implications for Occupational Therapy Practice While the Abbie Hunt Bryce Home does not have an occupational therapist on staff, the inclusion of a program created through the lens of occupational therapy was valuable and impactful to residents during their end of life care. Social participation is an area of occupation that can and should be addressed by occupational therapists in practice (American Occupational Therapy Association [AOTA], 2014). Social participation is incredibly important during the final stages of living, and engagement in social participation can increase ones quality of remaining life (Turcotte et al., 2018). The outcomes of this pilot program support the notion that occupational therapists have the skills and expertise necessary to provide effective quality of life interventions to individuals in hospice through the holistic scope of practice of occupational therapy. PENNWOOD PALS 19 References American Occupational Therapy Association [AOTA]. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suupl. 1), S1-S48. Bohlmeijer, E., Smit, F., & Cuijpers, P. (2003). Effects of reminiscence and life review on latelife depression: A meta-analysis. International Journal of Geriatric Psychiatry, 18(12), 1088-1094. doi: 10.1002/gps.1018 Bonnel, W., & Smith, K. V. (2018). Proposal writing for clinical nursing and DNP projects, Second edition. New York: Springer Publishing Company. Boucher, N. A., Kuchibhatla, M., & Johnson, K.S. (2017). Meeting basic needs: Social supports and services provided by hospice. Journal of Palliative Medicine, 20(6), 642-646. doi: 10.1089/jpm.2016.0459 Byock, I. R., & Merriman, M. P. (n.d.). Missoula-VITAS quality of life index: An assessment and outcome measure for palliative care. Retrieved from https://irabyock.org/writings/missoula-vitas-quality-of-life-index-mvqoli/ Byock, I. R., & Merriman, M. P. (1998). Measuring quality of life for patients with terminal illness: the MissoulaVITAS quality of life index. Palliative Medicine, 12(4), 231-244. doi: 10.1191/026921698670234618 Chow, J. K. (2015). The future of fieldwork experience: Hospice and palliative care. American Occupational Therapy Association Special Interest Section Quarterly, 25(4), 1-4. Cole, M. B. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. PENNWOOD PALS 20 Fitzpatrick, K. M. (2017). Understanding community connectedness among homeless adults. Journal of Community Psychology, 45(3), 426-435. doi: 10.1002/jcop.21851 Grewe, F. (2017). The souls legacy: a program designed to help prepare senior adults cope with end-of-life existential distress. Journal of Health Care Chaplaincy, 23, 1-14. doi: 10.1080/08854726.2016.1194063 Haber, D. (2006). Life review: Implementation, theory, research, and therapy. The International Journal of Aging and Human Development, 63(2), 153-171. https://doi.org/10.2190/DA9G-RHK5-N9JP-T6CC Haight, B. K. (1988). The therapeutic role of a structured life review process in homebound elderly subjects. Journal of Gerontology, 43(2), 40-44. https://doi.org/10.1093/geronj/43.2.P40 Keall, R. M., Clayton, J. M., & Butow, P. N. (2015). Therapeutic life review in palliative care: a systematic review of quantitative evaluations. Journal of Pain and Symptom Management, 49(4), 747-761. doi: 10.1016/j.jpainsymman.2014.08.015 Ko, E., & Nelson-Becker, H. (2014). Does end-of-life decision making matter? Perspectives of older homeless adults. American Journal of Hospice & Palliative Medicine, 31(2), 183188. doi: 10.1177/1049909112482176 Levasseur, M., Cohen, A., Dubois, M., Genereux, M., Richard, L., Therrien, F., & Payette, H. (2015). Environmental factors associated with social participation of older adults living in metropolitan, urban, and rural areas: the NuAge study. American Journal of Public Health, 105(8), 1718-1725. PENNWOOD PALS 21 Lyons, M., Orozovic, N., Davis, J., & Newman, J. (2002). Doing-being-becoming: Occupational experiences of persons with life-threatening illnesses. American Journal of Occupational Therapy, 56(3), 285-295. MacWilliams, J., Bramwell, M., Brown, S., & OConnor, M. (2014). Reaching out to Ray: delivering palliative care services to a homeless person in Melbourne, Australia. International Journal of Palliative Nursing, 20(2), 83-88. Namisango, E., Katabira, E., Karamagi, C., & Baguma, P. (2007). Validation of the MissoulaVitas quality of life index among patients with advanced AIDS in urban Kampala, Uganda. Journal of Pain and Symptom Management, 33(2), 189-202. doi: 10.1016/j.jpainsymman.2006.11.001 National Hospice and Palliative Care Organization [NHPCO]. (2009). NHPCO Facts and Figures: Hospice Care in America. Retrieved from http://www.halcyonhospice.org/DL/NHPCO_facts_and_figures%202009.pdf Podymow, T., Turnbull, J., & Coyle, D. (2006). Shelter-based palliative care for the homeless terminally ill. Palliative Medicine, 20, 81-86. doi: 10.1191/0269216306 Schwartz, C. E., Merriman, M. P., Reed, G., & Byock, I. (2005). Evaluation of the MissoulaVITAS quality of life index revised: Research tool or clinical tool? Journal of Palliative Medicine, 8(1), 121-135. Staudinger, U. M. (2001). Life reflection: A social-cognitive analysis of life review. Review of General Psychology, 5(2), 148-160. https://doi.org/10.1037/1089-2680.5.2.148 PENNWOOD PALS 22 Tobey, M., Manasson, J., Decarlo, K., Ciraldo-Maryniuk, K., Gaeta, J. M., & Wilson, E. (2017). Homeless individuals approaching the end of life: Symptoms and attitudes. Journal of Pain and Symptom Management, 53(4), 738-744. doi: 10/1016/j.jpainsymman.2016.10.364 Turcotte, P., Carrier, A., Roy, V., & Levasseur, M. (2018). Occupational therapists contributions to fostering older adults social participation: a scoping review. British Journal of Occupational Therapy, 81(8), 427-449. doi. 10.1177/0308022617752067 Trump, S. M., Zahoransky, M., & Siebert, C. (2005). Occupational therapy and hospice. American Journal of Occupational Therapy, 59(6), 671-675. Wijk, H., & Grimby, A. (2008). Needs of elderly patients in palliative care. American Journal of Hospice and Palliative Medicine, 25(2), 106-111. doi: 10.1177/1049909107305646 Wren, R. (2016). Effect of life review on quality of life for older adults living in nursing homes. Physical & Occupational Therapy in Geriatrics, 34(4), 186-204. doi: 10.1080/02703181.2016.1268236 Zhang, C., McCarthy, C., & Craik, J. (2008). Students as translators for the Canadian model of occupational performance and engagement. Occupational Therapy Now, 10(3), 3-5. PENNWOOD PALS 23 Appendix A Informal Interview Question Guides Staff Questions 1. 2. 3. 4. 5. 6. 7. What kinds of activities and programs are currently offered at Abbie Hunt Bryce Home? How often are activities and programs offered? What are the strengths and weaknesses of the current activities offered? Are there any types of activities that seem to be favorites of the residents? How do you determine what activities are planned and offered? How many participants do you typically have at activities? Are your current activities intended for more active residents, for more ill residents, or for a variety of resident health statuses? 8. How are participants recruited for activities? 9. How is scheduling and timing of activities determined? 10. Who plans the activities? 11. Do you ever include outside community members in activities, or are activities only for residents? Resident Questions 1. 2. 3. 4. 5. 6. 7. 8. Do you participate in the currently offered activities? Which activities do you enjoy the most? Which activities do you enjoy the least? What are some strengths and weaknesses of the current activities offered? What kind of future activities would you like to engage in at Abbie Hunt Bryce Home? What are some hobbies or leisure activities you participate in to pass the time? Are you satisfied with the current number of activities offered? Would you be interested in participating in a letter exchange program with individuals in the community? PENNWOOD PALS 24 Appendix B Results of SWOT Analysis Strengths 1. Monthly programming and activities are scheduled and offered to residents. 2. The Morning Light mission statement has a focus on improving or maintaining quality of life of residents. 3. Staff plan activities with quality of life in mind. 4. Staff are familiar with the residents and able to cater activities to their specific hobbies and interests. Weaknesses 1. Activities are planned for residents only and do not involve outside partnerships with individuals in the communities. 2. There is a lack of programming with a focus on life review. 3. Activities are often catered to the residents who are most active and well at the time, and activities are not being graded to include those residents who are more ill and unable or unwilling to leave their rooms. Opportunities 1. Several residents have expressed interest in opportunities for increased interaction with others. 2. Pennwood Place is owned and operated by Morning Light, the same company that owns and operates the Abbie Hunt Bryce Home. 3. Pennwood Place is in close proximity to the Abbie Hunt Bryce Home. 4. The Pennwood Place residents are active, social, and willing to participate in activities. Threats 1. Some Abbie Hunt Bryce Home hospice residents are unable to participate in activities that last several weeks due to the nature of hospice itself. 2. Pennwood Place residents may not want to begin social relationships with individuals who are terminally ill due to the knowledge that they may pass away before the conclusion of the program.  ...

... Running Head: CREATIVE LIFE REVIEW 1 Creative Life Review Programming for Older Adults in Long-Term Care and Assisted Living Alexis LeCount 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: Julie Bednarski, OTR, MHS, OTR, is an Associate Professor, MOT Program Director, OTD Capstone Coordinator, and Assistance Director of the School of Occupational Therapy at the University of Indianapolis CREATIVE LIFE REVIEW 2 A Capstone Project Entitled Creative Life Review Programming for Older Adults in Long-Term Care and Assisted Living 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 Alexis LeCount Entry-Level 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 CREATIVE LIFE REVIEW 3 Abstract Evidence: Older adults in institutional settings experience limited participation in leisure occupations, often leading to depression and decreased life meaning (Chippendale & BearLehman, 2012; Elias, Neville, & Scott, 2015). Life review is an enjoyable leisure activity for many older adults (de Guzman, Valdez, Pea, Quindao, & Quibol, 2017). Group life review offers additional benefits, including social interaction and cost-effectiveness (Elias, Neville, & Scott, 2015). Older adults sharing their story in a creative way encourages emotional processing (King, 2018). Finally, intergenerational exchange promotes positive attitudes of students toward older adults, and greater life meaning for older adults (Chippendale & Boltz, 2015a). Implementation: An occupational therapy (OT) student introduced a creative group life review program with intergenerational exchange in a long-term care and assisted living facility. The program consisted of seven weekly sessions in each facility, where residents shared life stories in groups. The final session included sharing with elementary students. Residents, students, and the partnering schools guidance counselor reported enjoying the experience during sessions. Outcomes: The OT student completed post-program interviews with residents, activity directors, and the schools guidance counselor. Several residents reported it was meaningful, and most stated they would participate again. Activity directors shared that residents enjoyed the group, and consistently looked forward to attending. The school counselor noted the students learned from and enjoyed the experience. To ensure sustainability, activity department personnel received a binder and in-person training including all program materials and relevant contact information. Life review provided a meaningful leisure occupation for residents in institutional settings. CREATIVE LIFE REVIEW 4 Creative Life Review Programming for Older Adults in Long-Term Care and Assisted Living As a part of this occupational therapy (OT) doctoral capstone experience, creative group life review programs will be introduced in a long-term care (LTC) and assisted living (AL) facility to provide new opportunities for meaningful occupational engagement for residents. The programming will include an opportunity for intergenerational exchange between participating older adults and young children. The following literature review focuses on the impact of participation in life review groups as a meaningful leisure and social occupation for older adults in LTC and AL facilities. Older Adults in LTC and AL Facilities In the United States, the number of older adults utilizing paid assistance for care is steadily increasing (Harris-Kojetin et al., 2016). This includes the use of LTC and AL facilities, among other sources of care. Due to this increase in utilization of services, there is an increased need to address the health and wellness of older adults living in these settings. Aging has many potential consequences on the interconnected aspects of health, including decreased psychological, physical, and emotional well-being (Steptoe, Deaton, & Stone, 2014; Zanjani, Downer, Hosier, & Watkins, 2015). These issues can be compounded by placement in an institutionalized long-term care facility. Many older adults who move to LTC or AL facilities experience psychological, social, and emotional challenges associated with a change in living situation (Haugan, Moksnes, & Lhre, 2016; Plys, 2017). Mental health concerns, such as depression, loneliness, and anxiety are especially common in residents of LTC facilities, and Harris-Kojetin and colleagues (2016) noted that up to 48.7% of nursing home residents have a diagnosis of depression (Elias, Neville, & Scott, 2015; Gaggioli et al., 2014). Residents who experience depression may be more prone to disability and premature death, as psychological CREATIVE LIFE REVIEW 5 and physical well-being are closely related (Crespy, Van Haitsma, Kleban, & Hann, 2016; Steptoe, Deaton, & Stone, 2014). Occupation of Leisure Participation in the occupation of leisure is associated with improved mental health, and may act as a barrier to depression, low self-esteem, and meaninglessness in life for individuals in LTC facilities (Chao & Chen, 2018). Leisure helps older adults in institutionalized settings preserve their personal identity, enjoyment in life, physical health, and cognitive function (Causey-Upton, 2015). Leisure activities are also effective interventions for the well-being of individuals living in AL facilities, and can encourage increased social support, functional abilities, satisfaction with life, self-efficacy, self-growth, and decreased depression (Plys, 2017). In addition, participating in leisure provided through the facility is associated with improved integration of new residents into the social and physical environment (Plys, 2017). Individuals living in LTC facilities may experience limited engagement in leisure activities. While self-care is labeled as necessary, leisure activities are considered optional, and as a result there is a lack of time and effort spent on assisting residents with these activities in this care setting (CauseyUpton, 2015). In AL facilities, residents commonly report that leisure activities provided by the facility do not fit their wants, needs, and skill levels (Plys, 2017). In addition, fresh and varied activities are not often available in this setting (Plys, 2017). Life Review Residents needs for leisure participation are not currently being met in these settings. In order for leisure to positively correlate with health and well-being, activities must align with participants interests and values (Plys, 2017). One activity associated with enjoyment and value for many older adults is reminiscence, or the recollection of past life events and experiences (de CREATIVE LIFE REVIEW 6 Guzman, Valdez, Pea, Quindao, & Quibol, 2017; Henkel, Kris, Birney, & Krauss, 2017). Reminiscence and life review are closely connected, as both include recalling and processing the past, however life review takes it a step further, by encouraging participants to re-analyze their experiences in order to resolve conflicts and understand the meaning of their lives (Satorres, Viguer, Fortuna, & Melndez, 2018). Reminiscence has been cited as a non-stigmatized and cost-effective method to encourage positive mental health outcomes for aging individuals (de Guzman et al., 2017). Butler (1963) first noted the importance of reminiscence and life review for older adults. He reported through several case studies that life review was utilized by individuals nearing death to understand their experiences in life so far, and how these past experiences have impacted their present (Butler, 1963). Recent life review interventions with older adults residing in institutional settings have resulted in positive outcomes. Elias, Neville, and Scott (2015) noted eight purposes served by reminiscing, including reinforcing self-identity, improving problem solving, preparing for death, teaching others, encouraging conversation, re-examining difficult or traumatic experiences, overcoming boredom, and maintaining memories of important people in the individuals life. Older adults participating in reminiscence experienced decreased depression, loneliness, and anxiety (Elias, Neville, & Scott, 2015). Chippendale and Boltz (2015a) applied an occupationbased life review program for individuals living in the community. They noted similar functions of the life review, including promoting a positive experience and well-being of participants, the opportunity to share with others, the value of sharing similar experiences and emotions with others, and increased meaning and purpose in life (Chippendale & Boltz, 2015a). Groups and life review. Both aforementioned studies were completed with groups of older adults, rather than one-on-one sessions (Chippendale & Boltz, 2015a; Elias, Neville, & CREATIVE LIFE REVIEW 7 Scott, 2015). Group reminiscence was preferred by Elias and colleagues (2015) due to the additional benefits offered through group sessions, including social interaction, improved communication, newly established social relationships, reduction of depression, and costeffectiveness. King (2018) concurred that social contact is an effective method for decreasing depression in the older adult population. Lawrence & Paige (2016) speculated that hearing others stories and experiences may lead to greater understanding of ones own experiences. Creativity and life review. Some life review programs have been implemented with the addition of creative projects and expression. The life review program implemented by Chippendale & Boltz (2015a) included participants writing to express their stories. Another researcher applied creative writing instruction to a life review group, and noted that learning how to share their story in a creative way encouraged participants to utilize more emotional processing and derive greater benefits from the activity (King, 2018). The potential benefits of participating in creative group activities, such as writing, poetry, visual arts, music, theater, and dance include increased social support, quality of life, cognitive and affective function, and pleasure in activities for older adults (Noice, Noice, & Kramer, 2013). Intergenerational exchange and life review. The positive impact of life review can be increased with the addition of intergenerational exchange. Chippendale and Boltz (2015b) stated that an intergenerational exchange consists of planned activities involving positive and beneficial interactions between individuals of different generations. As a part of their life review program, these researchers arranged an intergenerational exchange between health science students and the older adults participating in the program (Chippendale & Boltz, 2015b). During the intergenerational exchanges, each older adult shared a piece of their life story in the form of writing they had completed in the life review sessions, and participated in a semi-structured CREATIVE LIFE REVIEW 8 discussion with participating students (Chippendale & Boltz, 2015b). The experience increased the positive attitudes of healthcare students toward older adults, and increased the older adults sense of purpose and meaning in life (Chippendale & Boltz, 2015a; Chippendale & Boltz, 2015b). The findings of this literature review suggest that the implementation of a creative group life review program with intergenerational exchange in a LTC and AL facility would constitute a valuable low-cost leisure and social participation occupation for residents. The program would potentially result in decreased depression, increased self-esteem, greater purpose in life, improved self-identity, decreased loneliness and increased social support, and more successful integration into a new living situation. Theoretical Framework Gerotranscendence This programming will be guided by the theory of gerotranscendence. Gerotranscendence is a theory of aging introduced relatively recently, in 1989, with a purpose to reconsider the disengagement theory of aging (Tornstam, 1989). Disengagement theory assumes that as an individual ages, they withdraw from society, and society simultaneously pushes them away to increase the ease of impending death for both parties (Tornstam, 1989). The disengagement theory has been widely criticized and discounted by professionals in the field of aging, however, Tornstam (1989) considered the possible merits of disengagement from society, if it is voluntary and aimed at the development of gerotranscendence. An individual who has achieved gerotranscendence may experience a greater connection to past generations, a decrease in fear of death, a reevaluation and appreciation for past experiences, an understanding of how the pieces of life fit together to form a whole, a deep confrontation of ones self, and a new CREATIVE LIFE REVIEW 9 hopeful view of the future (Tornstam, 1999b). According to Tornstam (1989) these changes in thought processes are healthy and natural, which leads to increased satisfaction with life (Rajani & Jawaid, 2015). This theory is a suitable guide for life review programming with older adults, as many of the potential outcomes of a group life review program align with the tenets of gerotranscendence. Older adults participating in life review may reflect on both positive and negative life experiences, integrate the experiences into the whole of their lifetime, resolve past conflicts, and understand how their past experiences are connected to their present and future selves (Hsiao et al., 2018; Zanjani et al., 2015). These reflections act as catalysts for participants to reconstruct their view of themselves and the world around them, shifting their thinking toward transcendence (Hsiao et al., 2018; Tornstam, 1999a). Psychodynamic Frame of Reference The psychodynamic frame of reference (FOR) will be used as a model to guide the dayto-day design and implementation of life review programming. The psychodynamic FOR is based on the model of psyche introduced by Freud (1953). According to Freud (1953) the id, ego, and superego make up an individuals psyche. The id controls primitive instinct and instant gratification, the superego is concerned with morality and ethics, and the ego is considered logical and balances the id and superego (Freud, 1953). If the id, ego, and superego are not balanced properly, it can lead to aggression, anxiety, depression, and other counterproductive forms of expression (Cole & Tufano, 2008). In order to have a healthy ego, and therefore balanced psyche, an individual must have a strong sense of self, an understanding of reality, a sense of control, and sound thought processes (Cole & Tufano, 2008). CREATIVE LIFE REVIEW 10 To aide in development of these aspects of self, an individual may eliminate conflicts and fixations, express themselves appropriately, participate productively in groups, and ensure their sense of self is adequately defined (Cole & Tufano, 2008). Each activity completed in these group life review sessions will be designed with the promotion of ego development in mind, and program activities will promote creativity and reflection on life experiences. This will support improved mental health outcomes for participating older adults. The introduction of creative group life review programs with intergenerational exchange in a LTC and AL facility will provide new opportunities for meaningful occupational engagement for residents. Based on findings described in this literature review, the increased social and leisure participation has the potential to reduce depression, improve self-esteem, and increase feelings of meaning and purpose in life. To further promote these outcomes, the life review activities will be framed according to the theory of gerotranscendence, and the psychodynamic FOR. Screening and Evaluation For this project, needs assessments were completed in a LTC and AL facility. These needs assessments were used to analyze the social and leisure occupational engagement of residents, the need for life review programming, and the most effective ways to implement programming in each facility. As a part of the needs assessment, one-on-one in-person interviews were completed, and an analysis of strengths, weaknesses, opportunities, and threats (SWOT) was developed. The SWOT analysis was used to increase understanding of the setting and population prior to beginning the project (Bonnel & Smith, 2018). The needs assessment is an important piece of a clinical project, as it helps maintain the goal of continuous quality improvement in a setting (Bonnel & Smith, 2018). CREATIVE LIFE REVIEW 11 Needs Assessment in Long-Term Care and Assisted Living Facility Semi-structured interviews were completed with residents and activity staff in each facility to gather additional information regarding the fit of the program, and anticipate participation in the programming. See Appendix A for questions included in interviews with residents and activity directors. Administrators provided a list of residents in each facility who could be interviewed as part of the needs assessment. All interviews were completed one-on-one by the student. Interviews with activity directors in the LTC and AL facility took place in each respective activity room, and interviews with residents took place in their individual rooms. The number of interviews completed in each facility are displayed in Appendix A. The questions included in each interview are presented in Appendix B. The interviews helped develop a wellrounded SWOT analysis related to participation in the occupations of leisure and social participation, and the life review programming in each facility. The SWOT analysis revealed strengths in both the LTC and AL facilities including organized and well-developed activity programs, passionate activity staff, and large areas with tables for activity participation. In addition, the activities in each facility are effectively advertised and many residents participate consistently. For example, in the LTC facility, each resident receives a monthly activity calendar, has access to signage throughout the facility promoting scheduled activities, and each activity is announced overhead half an hour before beginning. In the AL facility, residents also receive monthly calendars and have access to an activity schedule outside the activity room at all times. The administrative and activity staff in both facilities are supportive, and have provided contact information and guidance regarding which residents to speak with in each facility. They also added the life review program to the monthly activity calendar in each facility to assist with promoting the program. CREATIVE LIFE REVIEW 12 Weaknesses were also identified, and while several residents in the LTC facility enjoyed the activities provided through the facility, one noted a deficit in higher level cognitive activities, such as poetry and writing. One resident living in the AL facility noted a need for novel activities, stating that since she had already done all the activities once there was no need to repeat them. Decreased social interaction between residents was also noted by a majority of residents in both facilities. In addition, there were very limited formal opportunities for reminiscence and life review offered in the LTC facility, and none in the AL facility. Finally, in the LTC facility, the activity director reported there are few leisure activities offered each month in which residents physically create a product, while there are a few more opportunities for creative and physically engaging activities in the AL facility, such as cooking and crafting. Miller (2016) found these weaknesses were noted in other LTC facilities, where residents requested more stimulating and creative activities which related more closely to their life experiences and interests. Plys (2017) reported there was a mismatch between activities offered in many AL facilities and activities desired by residents. Decreased social interaction could also be considered a weakness, as social engagement is an important aspect of successful aging (Jang, Park, Dominguez, & Molinari, 2014). Opportunities included two local schools near the facility and passionate staff willing to assist with programming. The activity director in the LTC facility reported that children from the nearby elementary school used to frequently visit the facility, however they have not had the connection recently. She expressed a need to renew the relationship, due to residents enjoying the interaction with young children. Another opportunity regarding life review programming was revealed through individual resident interviews, with several individuals reporting they enjoy thinking about their past, and typically only have opportunities to reminisce with family CREATIVE LIFE REVIEW 13 and close friends. The activity director at the AL facility noted that while reminiscence is never formally planned, it often occurs naturally during activities. All interviewees found the occupation of leisure important, and noted meaningful activities they participate in when able. This further established the importance of participation in leisure in older adults lives, as reported by several researchers. Participation in leisure is associated with decreased depression, improved self-esteem, increased meaninglessness in life, greater physical and cognitive health, improved personal identity, and enjoyment in life for individuals in LTC and AL facilities (Causey-Upton, 2015; Chao & Chen, 2018; Plys, 2017). Threats in both facilities were related to the large quantity of activities already offered, and the lack of commitment in multiple program sessions anticipated by residents. There are several activities offered daily at each facility, and with busy activity schedules, many residents reported they were unwilling to commit to attending several sessions of the life review programming. Inconsistent or lacking attendance to sessions threatens the potential positive impact of participation in the program for residents. In the LTC facility, approximately half of the residents interviewed stated they may be interested in life review programming. In the AL facility, a significantly smaller proportion of interviewees were interested in participating in the programming. None of the residents in the AL facility reported being bored throughout their day, as they had reading, group outings, napping, socializing, and other hobbies to participate in, while several residents in the LTC facility noted an occasional lack of leisure activities in their day. Regarding logistics, residents in both facilities who were potentially interested in participating noted that activities in the afternoon would be easier for them to attend. CREATIVE LIFE REVIEW 14 Needs Assessment in other Practice Areas The practice area plays an important role in the process of a needs assessment. In this LTC and AL facility the needs assessment consisted of one-on-one interviews due to the proximity of residents living spaces. It was time-effective to travel to each residents room to gather in-depth information through interviews in both facilities. The activity directors control a majority of programming in these facilities, and as a result they were important resources for the needs assessment. In this setting the focus of OT intervention is typically self-care rather than leisure or social occupations (Causey-Upton, 2015). As a result, the occupational therapists would not be responsible for implementing leisure-based group programming, and were not formally addressed as a part of this needs assessment. However, OT practitioners and certified occupational therapy assistants (COTA) in the facility noted the value of meaningful leisure activity and social participation for residents. One COTA specifically communicated the importance of sharing and hearing life stories when working with the geriatric population. A needs assessment conducted in an in-patient mental health facility may also include patient interviews, due to participants staying in the facility in close proximity. However, in this practice area it would be more pertinent to interview occupational therapists, because therapists in this setting may conduct more group interventions focused on social participation and reflection. Bullock & Bannigan (2011) noted that group work was commonly utilized by occupational therapists working in mental health. As a result, a group program focusing on leisure and social occupations would more likely be instituted by an occupational therapist in this setting than in LTC. In the practice area of home health, a needs assessment would have very different features than in an in-patient setting, such as LTC, AL, or in-patient mental health. Since CREATIVE LIFE REVIEW 15 participants would likely not live in close proximity to each other, it would be more time and cost-effective to mail surveys or questionnaires, or complete phone interviews, rather than oneon-one in-person interviews. In a home health setting, the relevant professionals to interview for a needs assessment would also be different than at an in-patient setting. A home health agency would likely not have an activity director on staff, and as a result, it may be most beneficial to interview therapists, nurses, and other staff who spend time with patients about the social and leisure participation needs going unmet through current therapeutic intervention. The needs assessment performed in the LTC and AL facility identified a need for increased leisure participation, especially in the LTC facility. Interviews and analysis also revealed a lack of social participation between residents in both facilities, inadequate opportunities for mentally stimulating activities, and a deteriorating relationship between the facilities and the nearby elementary school. These results indicated needs which could potentially be addressed in creative group life review programming with intergenerational exchange. The opportunities available at the site, including supportive administrative staff, the nearby elementary school, and the enjoyment of leisure and reminiscence activities for residents make implementation of this programming feasible. Program Implementation This doctoral capstone experience included two main interventions. The first intervention was the design and implementation of creative group life review programming with residents in a LTC and AL facility. The life review sessions took place once weekly for 45 minutes in each facility with small groups of residents lead by the OT student. The sessions were listed on the residents activity calendars for each month of the programs implementation. The OT student delivered flyers to prospective participants each week to further advertise for the CREATIVE LIFE REVIEW 16 activity. In addition, activity staff announced each session overhead, and assisted with gathering residents to participate when needed. Each session focused on a different theme from life, including favorite places in childhood (Airet & Dutkun, 2018; Satorres et al., 2018), firsts in young adulthood (Tamura-Lis, 2017), work life (Hsiao et al., 2018), home life and relationships as an adult (Airet & Dutkun, 2018; Tamura-Lis, 2017), favorite holidays and traditions (Airet & Dutkun, 2018), and health and the body throughout life (Zanjani et al., 2015). The variety of topics were determined through a literature review, and utilized to guide participating residents through a thorough review of their lives. During each session, residents: 1. Completed a short warm-up to become acquainted with other group members and the group leader. 2. Listened to the educational concepts and instructions associated with the activity. 3. Spent approximately 15 minutes completing a creative activity and reviewing a short worksheet with questions pertaining to the topic. 4. Shared their creative product and responses to the worksheet with the group. Creative activities included drawing a favorite place, writing a short story of an experience, creating an inspirational work ethics poster, decorating cutout paper people to represent family members and relationships, choosing colors to symbolize holidays and traditions, and drawing palms to appreciate changes in the body developed through the years. While the group leader encouraged residents to complete the creative activities during each session, group members rarely actually participated in this piece of the program. The group leader assisted with grading the difficulty of each activity up or down to encourage participation from all residents, regardless of cognitive or physical abilities. This included changing the font CREATIVE LIFE REVIEW 17 size, number of materials used, and steps in each activity to match the participants abilities (Tamura-Lis, 2017). However, many residents reported they were not artists, and could not complete the activities successfully. Instead, most group members spent time answering the worksheet questions prior to discussion, and shared their responses with the group. Following sharing, residents discussed memories with each other and compared their experiences to what people may typically experience today in similar situations. The group leader facilitated these conversations through discussion questions. See Appendix C for an example of a typical session design, derived from session designs found throughout Group Dynamics in Occupational Therapy: The Theoretical Basis and Practice Application of Group Intervention (Cole, 2005). The second intervention associated with the life review programming was the design and implementation of an intergenerational exchange in each facility between older adults and elementary school students. The principal and guidance counselor at the elementary school assisted with selecting fourth and fifth grade students, and obtaining permission for them to participate. Prior to them joining the program, the OT student educated the fourth and fifth grade students on successful interaction with older adults, and details of the upcoming experience through a short presentation. The presentation covered topics including how to address decreased hearing and confusion, as well as how to demonstrate active listening and respect. Seventeen fifth grade students met with residents in the AL facility, and 21 fourth grade students met with residents in the LTC facility to share life stories and experiences. Participants were placed in groups of three to five students with one or two older adults. Students and residents were provided with a list of questions as a guide on what to ask group members, and were encouraged to ask questions, actively listen to the responses, and share their own experiences. Many of the questions were related to topics reviewed during the previous life CREATIVE LIFE REVIEW 18 review sessions with residents in each facility. Following this activity, the group leader facilitated further discussion and comparison through discussion questions presented to the whole group of older adults and students in each facility. Implementation and Leadership Leadership skills were necessary for effective coordination of individuals in the LTC facility, AL facility, and elementary school for implementation of the life review programming and intergenerational exchange. The student communicated the goals of the life review programming and its relation to OT to the administrator at the LTC and AL facility, activity directors and staff at each site, and residents living in each facility to assist with organizing the program and recruiting participants. In addition, the student shared the goals related to the intergenerational exchange with the principal and guidance counselor at the local elementary school to help organize the event and recruit students to participate. Receiving feedback on all aspects of the program was an important part of ensuring implementation was successful. Feedback was provided by the site mentor, activity directors, residents, and residents family members. Feedback was utilized to increase the success of the program, regarding sustainability, participation, and enjoyment of the residents. In addition, the student utilized problem-solving when meeting with activity directors and school officials to plan the timing, location, and participants for the intergenerational exchange aspect of the program. Finally, maintaining organization, keeping a schedule, and practicing initiative were vital to the success of the programming. There were many tasks which needed to be accomplished each week, including recruiting residents to participate, designing activities, creating and printing documents, meeting with activity staff and directors, and leading group sessions in each facility. Especially due to the site mentor typically working off-site, it was important to be self-directed CREATIVE LIFE REVIEW 19 and practice initiative to complete all tasks associated with program development and implementation. Implementation and Staff Development Staff development was promoted throughout the implementation phase of the life review programming. The student utilized communication about the program to increase knowledge of the scope of OT practice for activity directors and staff, as well as administrators at the local elementary school. Activity directors and administrators were also educated on the occupations of leisure and social participation, through explanation of the focus and purpose of the program. The student educated activity staff on OT, the potential benefits of life review and reminiscence, and basic information regarding how to implement the life review programming during the implementation phase of this intervention. In addition, while the OT staff at the facility did not participate directly in the intervention, the discussion of the program reignited their consideration of the importance of leisure and social participation in their individual clinical practice. The implementation phase spanned a total of seven weeks, with two to eight residents attending each weekly session in both facilities. Residents, family members, students, and school administrators reported enjoying the experience during sessions. The implementation phase was supported by the communication and organization skills exhibited by the OT student, as well as the assistance and guidance from the site mentor, administrators at both facilities, activity directors and staff, and elementary school administrators. Outcomes and Discontinuation Continuous quality improvement (CQI) involves understanding a clinical problem and utilizing best-practice methods to resolve the issue (Bonnel & Smith, 2018). This process includes many possible steps, such as needs assessments, literature reviews, and outcome CREATIVE LIFE REVIEW 20 evaluation to ensure the solution is safe and effective (Bonnel & Smith, 2018). Quality improvement and project outcomes were considered throughout the program planning, implementation, and discontinuation phases. The OT student supported CQI by soliciting feedback about the program throughout the implementation and discontinuation phases from the site mentor, activity directors, activity staff, and residents in both facilities. Feedback was utilized to update creative activities, create effective advertisement flyers, and secure a comfortable and functional location and schedule for weekly sessions. In addition, the student created a goal-attainment scale, and referenced it throughout program implementation and discontinuation to ensure goals were met. Outcomes and Sustainability Post-program interviews. Several steps were taken to ensure CQI and sustainability of the life review program and intergenerational exchange sessions. Post-program semi-structured interviews were completed by the OT student one-on-one with participating residents, activity directors in each building, and the local elementary school guidance counselor. Reference Appendix D for detailed information regarding who was interviewed in each facility. The interview guides for all post-program interviews are included in Appendix E. Feedback from all interviewees was referenced to edit and finalize program session guides, activity worksheets, and materials for future implementation. Most residents indicated they enjoyed the life review programming and intergenerational exchange. Several residents in both facilities reported they found it meaningful to share and listen to stories and experiences from the past. In addition, all residents interviewed who attended life review sessions as well as the intergenerational exchange session noted that the discussion with the elementary school students was their favorite part of the program. One CREATIVE LIFE REVIEW 21 resident reported she would have liked to hear more of the students personal questions during the intergenerational exchange, rather than simply the questions provided by the group leader. A majority of residents interviewed reported they would participate in life review and intergenerational exchange again if it were offered in their facility. Activity directors in both facilities shared positive and constructive feedback from residents and staff, as well as their own observations. Both directors shared that residents appeared to enjoy reminiscing with the group leader, other residents, and especially the elementary students. The activity director in the LTC facility noted that several residents attended nearly every session of the program, indicating that they looked forward to it and enjoyed participating each week. In the AL facility, the activity director shared her insights on how to improve participation in future implementation of the program, by decreasing the focus on creative activities when advertising for each session to avoid intimidating potential participants. The elementary school guidance counselor provided feedback regarding her experience attending both intergenerational exchange sessions. She stated that some students shared with her that the experience was fun and interesting. She commented that the students not only learned about history, and the lives of older adults, they also learned how to interact with individuals outside of their age range and abilities. The guidance counselor noted that the students quickly learned to adapt their speaking and conversation to accommodate their older partners. She also felt the pre-session education about hearing loss and communicating with older adults was very valuable, and would be important to include in future repetitions of the program. CREATIVE LIFE REVIEW 22 Sustainability. In order to sustain the implementation of the life review programming and intergenerational exchange, activity directors and staff in each facility received a binder including all session guides, activity worksheets, and miscellaneous materials needed to conduct the life review sessions. This information also included contact information for the elementary school, information used to prepare students to participate in the exchange, and the activity worksheet utilized for the intergenerational exchange. In addition, the OT student utilized the activity binders to train two activity staff members in the LTC facility, and the activity director in the AL facility to implement the programming independently. This training consisted of approximately 30 minutes of in-person training with the OT student. Each facility staff member participating in the training asked questions as needed to ensure understanding of the material. Activity directors and staff were also educated once more on the importance of participation in leisure and social occupations, and the potential benefits of intergenerational exchange to further encourage sustainability. Finally, feedback from residents and the elementary school guidance counselor were shared with the activity directors and staff at this time. Response to Societal Needs This creative group life review and intergenerational exchange programming meets societal needs in several ways. Through creative group life review and intergenerational exchange, the meaningful leisure and social participation needs of older adults in institutionalized settings are addressed. Older adults living in institutional settings often experience limited participation in meaningful leisure occupations, due to the focus on self-care (Causey-Upton, 2015). This aspect of institutionalized care is associated with decreased wellbeing, depression, loneliness, anxiety, boredom, poor self-perception, and decreased feelings CREATIVE LIFE REVIEW 23 of meaning and purpose in life (Causey-Upton, 2015; Chippendale & Bear-Lehman, 2012; Elias, Neville, & Scott, 2015). Reminiscence is an enjoyable leisure activity for many older adults (de Guzman, Valdez, Pea, Quindao, & Quibol, 2017), and therefore has the potential to provide residents in institutional settings with a meaningful leisure occupation. In addition, since the life review in this program includes group sessions with other older adults, as well as elementary school students, the program encourages social participation. An intergenerational exchange program also has the potential to increase positive perceptions of older adults for younger generations (Chippendale & Boltz, 2015b). Older adults may require more physical, financial, and social support as they age, and as the population of older adults continues to grow, there is a need for younger generations to increase their support and care for this population (Harris-Kojetin et al., 2016). Fostering more positive perceptions of older adults in these younger generations may help prepare them to respond appropriately to this need in society. It is clear that the provision of a creative group life review program with intergenerational exchange has the potential to meet societal needs for increased meaningful leisure and social participation for older adults in this setting, and improved perceptions of older adults for younger generations. Subjective interviews with participants in, and observers of, this program demonstrated the enjoyment, meaningfulness, and learning associated with it. The implementation of this type of program in other similar facilities may lead to improved mental and social health for older adults, as well as more effective care from younger generations. CREATIVE LIFE REVIEW 24 Overall Learning Professional Communication Professional communication in written, oral, and nonverbal forms was practiced throughout this experience. The goals of the life review programming and its relation to OT were verbally communicated to the administrators at the LTC and AL facility, activity directors and staff at each site, and residents living in each facility to assist with organizing the program and recruiting participants. In addition, the goals related to the intergenerational exchange were communicated verbally to the administrators and staff members at the LTC and AL facility, as well as through email and verbally to the principal and guidance counselor at the local elementary school to organize the event and recruit students to participate. The OT student distributed flyers with large print, and verbally communicated with residents in the LTC and AL facility to remind them of the program schedule and topic each week. In addition, written, oral, and nonverbal communication were all utilized during life review and intergenerational exchange group sessions. The OT student used effective verbal and nonverbal communication to ask questions, appropriately listen to responses, and redirect conversation when necessary. This communication included speaking loudly and clearly, repeating statements as necessary, and using appropriate facial expressions and gestures (Tamura-Lis, 2017). In addition, all activity worksheets utilized by residents contained the main discussion points for each topic to aide in understanding when it was difficult to hear the verbal questions (Tamura-Lis, 2017). These resources were also printed with large font size to increase ease of reading for individuals with decreased vision (Tamura-Lis, 2017). CREATIVE LIFE REVIEW 25 Leadership and Advocacy The OT student utilized leadership and advocacy skills consistently throughout the doctoral capstone experience. Leadership was demonstrated through effective communication with all parties involved in the organization, implementation, and discontinuation of the program. In addition, the student lead life review and intergenerational exchange sessions, utilizing effective communication skills, confidence, and organization. Finally, the student accepted constructive feedback professionally from residents, family members, activity directors and staff, and the site mentor. This feedback was utilized to integrate needed changes into the students performance and improve leadership skills. The OT student provided education to residents, family members, staff at both facilities, school administrators, and the site mentor to advocate for the program and OT. These individuals were educated on OT, as well as the importance and benefits of leisure participation, social participation, and life review. This advocacy was important to increase interest in the life review program, ensure understanding of these occupations, and to empower residents to participate in leisure occupations of their choice. In addition, in the process of preparing the elementary school students for the intergenerational exchange sessions, the OT student educated them on OT, and the importance of the profession. The creative group life review program and intergenerational exchange sessions offered new social and leisure occupational participation opportunities for residents in institutional care. The OT student planned, implemented, and discontinued the program with the support and guidance of a faculty mentor, a site mentor, administrators at the LTC and AL facility, activity directors and staff in both facilities, residents, and administrators at the local elementary school. Continuous quality improvement and sustainability of the program, advocacy for OT and CREATIVE LIFE REVIEW 26 occupational participation, and professional development were addressed throughout all phases of the doctoral capstone experience. CREATIVE LIFE REVIEW 27 References Airet, G. D., & Dutkun, M. (2018). The effect of reminiscence therapy on the adaptation of elderly women to old age: A randomized clinical trial. Complementary Therapies in Medicine, 41, 124-129. Bonnel, W., & Smith, K. (2018). Proposal Writing for Clinical Nursing and DNP Projects, Second edition. New York: Springer Publishing Company. Bullock, A., & Bannigan, K. (2011). Effectiveness of activity-based group work in community mental health: A systematic review. American Journal of Occupational Therapy, 65(3), 257-266 Butler, R. N. (1963). The life review: An interpretation of reminiscence in the aged. Psychiatry, 26(1), 65-76. Causey-Upton, R. (2015). A model for quality of life: Occupational justice and leisure continuity for nursing home residents. Physical & Occupational Therapy in Geriatrics, 33(3), 175188. Chao, S. F., & Chen, Y. C. (2018). Environment patterns and mental health of older adults in long-term care facilities: The role of activity profiles. Aging & mental health, 1-10. Chippendale, T., & Bear-Lehman, J. (2012). Effect of life review writing on depressive symptoms in older adults: A randomized controlled trial. American Journal of Occupational Therapy, 66(4), 438-446. Chippendale, T., & Boltz, M. (2015a). Living legends: Effectiveness of a program to enhance sense of purpose and meaning in life among community-dwelling older adults. American Journal of Occupational Therapy, 69(4), 1-11. CREATIVE LIFE REVIEW 28 Chippendale, T. & Boltz, M. (2015b). Living Legends: Students' responses to an intergenerational life review writing program. Journal of the American Geriatrics Society, 63(4), 782-788. Cole, M. B. (2005). Group dynamics in occupational therapy: The theoretical basis and practice application of group intervention. Thorofare, NJ: Slack Incorporated. Cole, M. B. & Tufano, R. (2008). Psychodynamic Frame. In Cole, M. B. & Tufano, R. (Eds.), Applied theories in occupational therapy: A practical approach (pp. 255-275). Thorofare, NJ: Slack Incorporated. Crespy, S. D., Van Haitsma, K., Kleban, M., & Hann, C. J. (2016). 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Effectiveness of group reminiscence for improving wellbeing of CREATIVE LIFE REVIEW 29 institutionalized elderly adults: Study protocol for a randomized controlled trial. Trials, 15(1), 408. 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 from the National Study of Long-Term Care Providers, 2013-2014. National Center for Health Statistics. Vital & Health Statistics. 3(38), 1-105. Haugan, G., Moksnes, U. K., & Lhre, A. (2016). Intrapersonal selftranscendence, meaningin life and nursepatient interaction: Powerful assets for quality of life in cognitively intact nursinghome patients. Scandinavian Journal of Caring Sciences, 30(4), 790-801. Henkel, L. A., Kris, A., Birney, S., & Krauss, K. (2017). The functions and value of reminiscence for older adults in long-term residential care facilities. Memory, 25(3), 425435. Hsiao, C. Y., Yeh, S. H., Wang, J. J., Fu, L. Y., Lin, I. F., & Li, I. C. (2018). The effect of gerotranscendence reminiscence therapy among institutionalized elders: A randomized controlled trial. Neuropsychiatry (London), 8(3), 881-892. Jang, Y., Park, N. S., Dominguez, D. D., & Molinari, V. (2014). Social engagement in older residents of assisted living facilities. Aging & mental health, 18(5), 642-647. King, K. D. (2018). Bringing creative writing instruction into reminiscence group treatment. Clinical gerontologist, 41(5), 438-444. Lawrence, R. L., & Paige, D. S. (2016). What our ancestors knew: Teaching and learning through storytelling. New Directions for Adult and Continuing Education, 149, 63-72. Miller, E. (2016). Beyond bingo: A phenomenographic exploration of leisure in aged care. Journal of Leisure Research, 48(1), 35-49. CREATIVE LIFE REVIEW 30 Noice, T., Noice, H., & Kramer, A. F. (2013). Participatory arts for older adults: A review of benefits and challenges. The Gerontologist, 54(5), 741-753. Plys, E. (2017). Recreational activity in assisted living communities: A critical review and theoretical model. The Gerontologist, 00(00), 1-16. Rajani, F., & Jawaid, H. (2015). Theory of gerotranscendence: An analysis. Austin Journal of Psychiatry and Behavioral Sciences, 2(1), 1035. Satorres, E., Viguer, P., Fortuna, F. B., & Melndez, J. C. (2018). Effectiveness of instrumental reminiscence intervention on improving coping in healthy older adults. Stress and Health, 34(2), 227-234. Steptoe, A., Deaton, A., & Stone, A. A. (2014). Subjective wellbeing, health, and ageing. Lancet (London, England), 385(9968), 640-648. Tamura-Lis, W. (2017). Reminiscing--a tool for excellent elder care and improved quality of life. Urologic Nursing, 37(3), 151-158. Tornstam, L. (1989). Gerotranscendence: A reformulation of the disengagement theory. Aging Clinical and Experimental Research, 1(1), 55-63. Tornstam, L. (1999a). Gerotranscendence and the functions of reminiscence. Journal of Aging and Identity, 4(3), 155-166. Tornstam, L. (1999b). Transcendence in later life. Generations, 23(4), 10. Zanjani, F., Downer, B. G., Hosier, A. F., & Watkins, J. D. (2015). Memory banking: A life story intervention for aging preparation and mental health promotion. Journal of Aging and Health, 27(2), 355-376. CREATIVE LIFE REVIEW 31 Appendix A Number of Interviewees in LTC and AL facilities Interviewee Title LTC Facility AL Facility Activity directors 1 1 Residents 8 8 Note. Residents and activity directors were interviewed by student one-on-one. LTC = long-term care; AL = assisted living. CREATIVE LIFE REVIEW 32 Appendix B Needs Assessment Interview Guides Activity Director Interview: 1. What types of activities are offered for long-term care (LTC)/assisted living (AL) residents? Do you do any writing, arts and crafts, or ice breaker activities? 2. How do you determine what types of activities to offer? 3. How often are activities held? 4. Are there any activities that are consistently repeated? 5. Do you have consistent participants? Are there particular individuals who participate in programming frequently? 6. How do you recruit participants for activities? 7. How do you handle logistics, such as scheduling, location, space, and materials? 8. Is there potential opportunity for additional programming or changes to programming currently offered? Do activities change frequently? 9. How do you ensure safety and comfort with participants during activities? 10. What is the procedure for participants who may become upset during activities? 11. Do you ever leave the facility for activities with residents? Do you ever bring other individuals in to the facility for activities? 12. Would you be willing to assist with determining which residents may be most likely to participate? Resident Interview: 1. What do you do in your free time? 2. How often do you feel bored? 3. How do you feel when talking with individuals who are close to you in age? 4. How do you feel when talking with individuals who are younger or older than you? 5. How often do you interact with other residents in the facility? 6. How often do you participate in activities provided by facility? 7. What types of activities are your favorite? 8. What types of activities are you least interested in? 9. Why do you or do you not participate in activities? 10. What types of activities do you wish the facility would provide? What types of activities would you like to participate in? 11. How do you feel when thinking about past events in your life? 12. How often do you have the opportunity to share stories about your life with others? 13. How do you feel when sharing stories from your life with others? 14. How would you feel about participating in a weekly activity to review and share your life story creatively? 15. What time of day would you be most likely to participate in programming? CREATIVE LIFE REVIEW 33 Appendix C Life Review Session Guide Date: Group title: Life Review Session title: Childhood Memories Format: (45 min) Warm-up 5 minutes Introduce/instructions for activity 5 minutes Activity 15 minutes Discussion 15 minutes Summary 5 minutes Supplies: Printer paper, construction paper, pencils, colored pencils, crayons, and session 1 activity worksheet Description: 1. Introduction: a. Warm-up State your name and where you grew up. b. Educational concepts This is the first session of an 8-week life review program. You are in no way committed to coming to all 8 sessions, however, if you enjoy your time today I would encourage you to come to as many sessions as possible. Life review and reminiscence can have many possible health benefits, including improved mental health, improved memory, and increased social support. Today we will be thinking about childhood. We will focus on memories of where you lived when you were young, and who you lived with. 2. Activity: a. Instructions The activity for today is a piece of artwork representing a favorite or meaningful place in which you lived or spent a lot of time when you were a child. This could be a bedroom, living room, back yard, school, or anywhere significant to you. After the activity, I will allow everyone the opportunity, if they would like, to share their picture, talk about the place they drew, and why it is important to them. You can draw your picture as realistically or abstractly as you would like. There is no wrong answer, this is simply an activity to express your memories in a different way! i. Opportunity for adaptation: If you would prefer, you can answer the printed list of questions about your location/room/area instead of drawing a picture. b. Pass out materials Here is a piece of paper and pencil for each of you. Coloring materials are distributed around the table. c. Complete activity We will take approximately 15 minutes to work, then see where everyone is at in their process. 3. Sharing: a. Members share project with group. i. Would anyone like to share about the place they drew? ii. Examples of questions to ask during sharing: What place did you draw? Why was this place important to you? Who does this place make you think of? Who did you spend time with in this place? (parents, siblings, friends, pets, etc.) CREATIVE LIFE REVIEW 4. 5. 6. 7. 34 iii. Take turns sharing your responses to the worksheet. Processing: a. Questions for discussion: i. How did you feel when thinking about memories from so long ago? 1. Did you think of more positive or negative memories when drawing this place? ii. Were certain pieces of the memory more clear to you than others? Which pieces? Why might that be? (were certain parts more valuable/meaningful to you?) Generalizing: a. Questions for discussion: i. How do your memories compare with others? Did anyone draw similar places? ii. What seemed to be the most impactful places for the group? Application: a. Questions for discussion: i. How will you use your drawing? Will you reminisce with family/children/friends? ii. What could your children/grandchildren/young friends learn from your childhood memories? Summary: a. Summarize what happened in the group today, and what will be covered next week. i. Today we reminisced on childhood, specifically where we grew up and who we grew up with. Hopefully this activity helped you remember the things you learned as a child, and what you have to share with and teach young people. Next week we will reminisce about your teenage and young adulthood years. Note. Session design derived from Group Dynamics in Occupational Therapy: The Theoretical Basis and Practice Application of Group Intervention (Cole, 2005) CREATIVE LIFE REVIEW 35 Appendix D Number of Post-Program Interviewees Elementary Interviewee Title LTC Facility AL Facility Activity directors 1 1 Residents 5 5 Guidance counselor Note. Interviews were completed by student one-on-one. LTC = long-term care; AL = assisted living. School 1 CREATIVE LIFE REVIEW 36 Appendix E Post-Program Interview Guides Activity Director Interview: 1. What feedback have you received from staff or residents regarding the life review programming? 2. What evidence have you seen about the meaningfulness of the program for residents who participated? 3. What constructive feedback do you have regarding the life review sessions and intergenerational exchange? 4. What suggestions do you have for ensuring sustainability of this program at the facility? 5. The most unique aspect of this program is the intergenerational exchange. What suggestions do you have to encourage the sustainability of this part of the program? Resident Interview: 1. What did you enjoy about the life review program? a. What would you have changed? 2. What did you enjoy about the intergenerational exchange? a. What would you have changed? 3. How did you learn about the program? 4. How likely would you be to participate in life review at another time if it were provided by the activity director in your facility? 5. How did you feel about the length of the sessions? 6. Were there any important life topics you felt we did not cover? 7. In what ways did you feel the life review sessions and intergenerational exchange were meaningful? 8. Is there anything else you would like to share with me? Guidance Counselor Interview: 1. How did you determine which students to recruit for the experience? 2. What feedback did you receive from students or participating staff regarding this experience? 3. In what ways do you feel this experience may have been valuable for the students? 4. What were your observations regarding the value of the experience for residents at the facility during the intergenerational exchange sessions? 5. What suggestions do you have to make it easier for the school to be involved in replicating this program in the future?  ...

... Running head: THE ROLE OF OT IN POST INTENSIVE CARE SYNDROME Exploring the Role of Occupational Therapy in the Prevention and Treatment of Post-Intensive Care Syndrome Claire Kittridge 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: Lucinda Dale, EdD, OTR, CHT, FAOTA THE ROLE OF OT IN PICS 1 A Capstone Project Entitled Exploring the Role of Occupational Therapy in the Prevention and Treatment of Post-Intensive Care Syndrome 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 Claire Kittridge Exploring the Role of Occupational Therapy in the Prevention and Treatment of Post-Intensive Care Syndrome 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 THE ROLE OF OT IN PICS 2 Abstract The purpose of my doctoral capstone experience was to explore the role of occupational therapy in the prevention and treatment of post-intensive care syndrome (PICS). My project consisted of three main components: a) developing a cognitive wellness program for patients in the Intensive Care Unit (ICU), b) adding an occupation-based functional cognition assessment to the Critical Care Recovery Center (CCRC) and facilitating appropriate outpatient therapy referrals, and c) developing education resources for family members of patients in the ICU. After I developed these components, I presented the findings to the inpatient therapy staff at my site. Then, I distributed a survey to assess understanding of the information and feasibility of the cognitive wellness program. Results of the survey indicated that 92% of therapists reported proficient understanding of the program (n = 11). Therapists reported feasibility of the program on a 0-100 scale, with an average feasibility rating of 76. Occupational therapists can aid in the prevention of delirium and resulting PICS by providing cognitive stimulation tasks alongside traditional treatment in the ICU. Additionally, occupational therapists can evaluate patients with PICS in outpatient settings using occupation-based measures. THE ROLE OF OT IN PICS 3 Literature Review Post intensive care syndrome (PICS) is described as a collection of physical, cognitive, and/or mental health deficits following an ICU stay (Elliot et al., 2014). However, these effects were not restricted to the patient; families of patients in the ICU often experienced stress, anxiety, and post-traumatic stress disorder (PTSD) (Needham et al., 2012). Members of the Society of Critical Care Medicine developed a model (see Appendix A) to demonstrate the symptoms of PICS, as well as the effects on family, also referred to as post-intensive care syndrome family (PICS-F) (Needham et al., 2012). Individuals with PICS experienced symptoms in three categories: (a) mental health decline, (b) cognitive impairments, and (c) physical impairments. The family of the individual who survived the ICU experienced mental health symptoms, including anxiety, PTSD, depression, and complicated grief (Needham et al., 2012). The most common cognitive deficits found in this population were decreased global cognitive function and decreased executive function (Pandharipande et al., 2013). Although the mechanism of cognitive impairment following an ICU stay was unknown at the submission of this paper, the long-term cognitive deficits and resulting functional impairments have been well documented. Pandharipande et al. (2013) found that at three months post-discharge, 40% of patients admitted to an ICU with respiratory failure or shock scored a global cognition level similar to an individual with a moderate traumatic brain injury. An additional 26% of patients produced scores similar to an individual with mild Alzheimers disease three months after discharge (Pandharipande et al., 2013). In a study that took place at the Critical Care Recovery Center (CCRC) at Eskenazi Health, Lasiter and Boustani (2015) found that approximately onethird of individuals who survived critical illness had inadequately treated depression similarly to THE ROLE OF OT IN PICS 4 the findings of Wang et al. (2017). These ongoing chronic deficits negatively affected long-term health related quality of life (Van den Boogaard et al., 2012). For example, on self-report questionnaires, patients who experienced delirium rated themselves lower in the cognitive domain than individuals who also survived the ICU but did not experience delirium, most markedly in the areas of memory and names (Van den Boogaard et al., 2012). Additionally, patients who experienced cognitive deficits following an ICU stay reported lower health-related quality of life than did those who did not experience cognitive deficits and increased rates of new unemployment at three and twelve months post-discharge (Norman et al., 2016; Rothenhausler, Ehrentraut, Stroll, Schelling, & Kapfhammer, 2001). Despite this evidence, much of standard ICU rehabilitation is centered on mobility. Schweickert et al. (2010) indicated that a combined occupational therapy and physical therapy early mobilization program decreased incidence of delirium, but did not necessarily address the patient in a holistic manner with long-term cognitive deficits. Delirium was a predictor of long-term cognitive impairment among individuals who survived a critical illness (Girard et al., 2010). Delirium is defined as a disturbance in attention and awareness [that] develops over a short period of time. . . . represents an acute change from baseline attention and awareness, . . . tends to fluctuate in severity during the course of the day. . . . [and is] not better explained by a preexisting, established, or evolving neurocognitive disorder. (American Psychiatric Association, 2013, p. 596) In many ICU settings across the country, delirium is objectively identified using the Confusion Assessment Method for the Intensive Care Unit (CAM-ICU) (Ely, 2002; Martinez, Tobar, & Hill, 2014). This tool is used by a variety of healthcare practitioners; patients respond to yes or THE ROLE OF OT IN PICS 5 no questions basedon performance of simple motor tasks. The Richmond Agitation Sedation Scale (RASS) is another tool used in hospitals around the country to evaluate level of sedation. This tool can help practitioners identify appropriate interventions and pharmacological management (Ely, 2002). The CAM-ICU and RASS are used at Eskenazi Health among nursing staff, medical teams, and rehabilitation professionals to identify delirium. However, there was no specific protocol to address delirium or decrease level of sedation with non-pharmacological methods, such as environmental adaptations, in regards to cognitive function, such as the methods described in Martinez, Tobar, Beddings, Vallejo, & Fuentes (2012). Family involvement is a critical aspect of ICU care. Family members of individuals admitted to intensive care units have been diagnosed with general anxiety disorder, PTSD, depression, and complicated grief following a family members stay in the ICU (Needham et al., 2012). Symptoms of PTSD have been demonstrated in family members of ICU patients, and symptoms were even greater when the family member shared the end of life decision making (Azoulay et al., 2005). Additionally, these symptoms do not necessarily resolve after the individual returns home (Jones et al., 2004). Involving the family with non-pharmacological intervention may improve patient outcomes as well as empower family members to provide appropriate interventions and reduce overall caregiver stress (Martinez et al., 2012). Occupational therapy practitioners are equipped to address PICS as well as PICS-F in three major ways. First, occupational therapy practitioners can use sensory integration, mobility related to activities of daily living, and cognitive rehabilitation principles in order to address delirium in the ICU and therefore decrease the incidence of cognitive impairment among individuals who survived the ICU (Alvarez et al., 2017). Occupational therapy practitioners can also address cognitive deficits acquired after an ICU stay in a unique manner that focuses on THE ROLE OF OT IN PICS 6 function for individuals in a post-acute care setting in order to maximize safety and independence with activities of daily living and instrumental activities of daily living (IADL) (Giles & Wolf, 2017). Identifying these deficits as they relate to performance in activities of daily living and IADL can help to prevent readmissions and lower healthcare costs (Lone et al., 2016; Rogers, Bai, Lavin, & Anderson, 2016). Additionally, occupational therapy practitioners can use their knowledge of activity adaptation and health literacy to educate family members of individuals affected by PICS-F in order to reduce stress levels and PTSD symptoms. Iwashyna (2010) indicated critical care is shifting towards a survivorship mindset and occupational therapy practitioners are equipped to increase the independence of individuals who survive the ICU in multiple ways that benefit the healthcare system as a whole. Screening and Evaluation As a part of the initial screening process, I had multiple conversations with site mentors, occupational therapists at Eskenazi Health, the rehabilitation department manager, the physician who directs the CCRC, and pharmacists working in the ICU and CCRC. The early mobility program at Eskenazi began five years ago and there was a foundation of multidisciplinary collaboration. However, there was not a standard, therapy-driven method of preventing delirium in the ICU, despite evidence supporting non-pharmacological methods for addressing delirium (Martinez et al., 2012). Additionally, the CCRC collected data using neuropsychological tests, physical fitness batteries, and depression and post-traumatic stress disorder (PTSD) screenings, but did not address functional cognition as it relates to performance in activities of daily living and IADLs (Lasiter & Boustani, 2015). The assessments used are similar to those administered at other successful follow-up clinics targeted towards individuals who have survived the ICU, such as the Vanderbilt University Medical Centers Critical Illness, Brain Dysfunction, and THE ROLE OF OT IN PICS 7 Survivorship Center (2019). There was also a lack of uniform and appropriate family education regarding delirium and follow-up to the CCRC clinic throughout the hospital. This screening process led to a strengths, weaknesses, opportunities, and threats (SWOT) needs assessment for the inpatient and outpatient settings (Bonnel & Smith, 2018). Strengths identified for the ICU included (a) multidisciplinary collaboration and mutual respect among professions, (b) a well-established early physical mobility program, (c) and strong occupational therapy involvement in the ICU. However, the weaknesses identified in the ICU included varying knowledge on long-term effects of delirium as well as no formal protocol for providing cognitive rehabilitation. Based on the SWOT analysis, the opportunity was identified to create a cognitive wellness program for ICU patients to prevent PICS. Threats to this opportunity were feasibility and increasing workload for therapists. The CCRC was equipped with a multidisciplinary and collaborative staff, which was identified as a strength for the SWOT assessment (Lasiter & Boustani, 2015). However, the clinic had a poor rate of patient return, lacked a formal functional cognitive assessment, and only received referrals from one case manager. To minimize these weaknesses, there was an opportunity to add an occupation-based assessment and educate a larger multidisciplinary team on occupational therapys role in cognitive rehabilitation. The primary threat was difficulty with structuring billing for services rendered at the CCRC. This project occurred in a traditional medical model practice setting. If the project were to be in a community-based setting, screening and evaluation would need to be completed differently. For example, it would be impossible to work with patients currently admitted to an ICU in a community-based setting and very difficult to identify individuals who have survived the ICU in this type of setting. However, there would be benefits to working with these THE ROLE OF OT IN PICS 8 individuals in a community based setting. The current CCRC schedule allows for approximately ten minutes of appointment time for each health care practitioner limiting what an occupational therapist can acomplish. To assess functional cognition, implementation of the medication management portion of the Executive Function Performance Test (EFPT) occurred (Baum & Wolf, 2013). However, with more time, the entire EFPT could be implemented and provide a more thorough assessment. Implementation Phase For the implementation phase, I addressed the three main goals and resulting objectives that I developed prior to the beginning of my project. The goals all contributed towards achieving in-depth knowledge of occupational therapys role in the prevention and treatment of PICS. My initial goals were as follows: (a) student will implement cognitive based interventions with the purpose of decreasing length of delirium in the ICU with at least 10 patients, (b) student will implement at least one occupation-based assessment in the CCRC, and (c) student will develop family education material to increase health literacy and lower stress associated with caring for a family member in the ICU. I developed three different programs to address my initial goals: a) ICU cognitive wellness programming, b) CCRC assessment tool implementation and referral education, and c) family education resources. Each of these areas corresponded to a goal and resulting objectives that contributed towards achieving in-depth knowledge of occupational therapys role in the prevention and treatment of PICS. Intensive Care Unit Cognitive Wellness Programming For the ICU cognitive wellness programming, I developed a system of graded cognitive activities for patients based on RASS level and CAM-ICU score that corresponded with the established Eskenazi Health mobility protocol (Ely, 2002). The purpose of these activities was to THE ROLE OF OT IN PICS 9 increase cognitive stimulation and engagement in meaningful activity during an ICU stay. For example, a patient with a history of delirium with a current RASS level of 0 participated in a moderate challenge word search puzzle (see Appendix B). The formatting of these activities is based on the Activity and Cognitive Therapy in the Intensive Care Unit Trial through Vanderbilt University (Brummel et al., 2012). In this study, researchers also provided graded cognitive stimulation activities based on RASS level (Ely, 2002). Critical Care Recovery Center (CCRC) Assessment Tool Implementation In the CCRC, I implemented the medication management portion of the EFPT (Baum & Wolf, 2013). I added this subtest to the list of assessments already provided at the CCRC in order to understand functional cognition as it relates to IADL performance. Additionally, I worked with the interdisciplinary team in the CCRC, which included a critical care physician, critical care pharmacist, social worker, neuropsychologist, and medical assistant. This collaboration facilitated appropriate referrals for outpatient therapy services for patients who survived the ICU. Further collaboration with an outpatient speech therapist was essential to developing cognitive compensatory strategies handouts for patients with cognitive deficits following an ICU stay (see Appendix C). Family Education For the family education portion of my project, I developed handouts on delirium prevention and discharge expectations from the ICU, specifically addressed the F portion of the bundle, or Family Engagement and Empowerment (Ely, 2017; see Appendices D and E). I collaborated with the Medical Quality Assurance team to develop these education materials in alignment with hospital implementation of the Society of Critical Care Medicines ABCDEF bundle (Ely, 2017). The ABCDEF bundle stands for A) assess, prevent, and manage pain, B) THE ROLE OF OT IN PICS 10 both spontaneous awakening trials and spontaneous breathing trials, C) choice of analgesia and sedation, D) delirium: assess, prevent, and manage, E) early mobility and exercise, and F) family engagement and empowerment (Ely, 2017). Health literacy was an important part of the family education component of my project. I utilized Readable, an online tool that measures the FleschKincaid reading level, to ensure all materials were at an eighth grade level or lower (Badarudeen & Sabharwal, 2010). All materials created for this project were at less than an eighth grade level. Leadership and Staff Development Leadership is an important aspect of the Doctoral Capstone Experience. I demonstrated leadership by developing an inservice for the inpatient therapy team. The purpose of this inservice was to market the cognitive wellness program, explain the role of the CCRC and referral process, and distribute the family education materials. In order to address staff competency, I included case studies for the therapy staff to discuss ways to use the cognitive wellness program as well as appropriate CCRC referrals. Additionally, throughout my project I consistently advocated for appropriate occupational therapy services when working with the inpatient and outpatient therapy teams. I advocated for patients with members of the interdisciplinary team including: physicians, residents, nursing staff, occupational therapists, physical therapists, speech therapists, pharmacists, case managers, and social workers. Throughout this process, I was able to advocate for individual patients as well as the general role of occupational therapy in the ICU. Discontinuation and Dissemination The discontinuation phase of my project began by developing a Lunch and Learn for the inpatient therapy staff. Outcomes were measured by sending out a survey to the therapists THE ROLE OF OT IN PICS 11 that attended the inservice to measure understanding and feasibility. This survey also addressed ongoing quality improvement measures. The survey and results are included in Appendix F. In order to address sustainability, I worked with multiple occupational therapists to ensure carryover and understanding of the cognitive wellness program. I collaborated with other occupational therapists to develop effective interventions and provided appropriate resources for the interventions according to the chart (see Appendix B). Additionally, I collaborated with an outpatient speech therapist to develop referral protocols for the CCRC for outpatient occupational and speech therapy services. Aside from the survey addressing ongoing quality improvement, I met with multiple occupational therapists and the department manager to ensure quality services and make adjustments according to feedback. For example, one therapist suggested placing the activities in a specific central location in the hospital instead of the rehabilitation department office so that the materials are more easily accessible. This was an easy change that made a huge difference in feasibility of using the materials. My project was developed as a response to the societal need to address ICU survivorship (Iwashyna, 2010). There is an increasing number of patients who survive critical illness, but have resulting impairments in physical function, cognitive function, and mental health (Needham et al., 2012). My project addresses this societal need in two ways: a) addressing delirium management and prevention in the ICU and b) addressing physical and cognitive function needs in the CCRC. Overall Learning Throughout the project, I consistently communicated with various healthcare professionals verbally, nonverbally, and through written communication such as email. THE ROLE OF OT IN PICS 12 Additionally, I created resources to enhance family education and verbally communicated with families of patients in the ICU to provide education on delirium management and discharge follow-up to the CCRC. Communication with the inpatient therapy team was crucial as I marketed and disseminated the cognitive wellness program and CCRC referral information. I learned how to communicate efficiently in a fast-paced setting with health professionals who understand occupational therapy at varying levels. Additionally, I learned how to function as a member of an interdisciplinary team and provide advice and suggestions to other therapists while also receiving feedback. My leadership skills grew substantially as I became more confident communicating with other healthcare professionals and advocating for appropriate occupational therapy services for patients. I also learned how to efficiently and effectively demonstrate occupational therapys value in the ICU. Overall, I improved substantially in areas of advocacy and leadership. I developed selfconfidence in speaking with other health professionals and advocated for the diverse role of occupational therapy in the ICU. Additionally, I learned how to advocate for specific patient needs, such as CCRC visits or additionally outpatient therapy needs. This project was an excellent experience that significantly contributed to my growth on a personal and professional level. THE ROLE OF OT IN PICS 13 References Alvarez, E. A., Garrido, M. A., Tobar, E. A., Prieto, S. A., Vergara, S. O., Briceno, C. D., & Gonzalez, F. J. (2017). Occupational therapy for delirium management in elderly patients without mechanical ventilation in an intensive care unit: A pilot randomized control trial. Journal of Critical Care, 37, 85-90. doi:10.1016/j.jcrc.2016.09.002 American Psychiatric Association. (2013). Neurocognitive disorders. In Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Arlington, VA: American Psychiatric Publishing. Azoulay, E., Pochard, F., Kentish-Barnes, N., Chevret, S., Aboab, J., Adrie, C., Sclemmer, B. (2005). Risk of post-traumatic stress symptoms in family members of intensive care unit patients. American Journal of Respiratory and Critical Care Medicine, 171(9), 987994. doi: 10.1164/rccm.200409-1295OC Badarudeen, S., & Sabharwal, S. (2010). Assessing readability of patient education materials: Current role in orthopaedics. Clinical Orthopaedics and Related Research,468(10), 25722580. Baum, C. M. & Wolf, T. J. (2013). Executive function performance test (EFPT). Program in Occupational Therapy: Washington University School of Medicine. Bonnel, W., & Smith, K. (2018). Clinical projects and quality improvement: Thinking big picture. In W. Bonnel, & K. Smith (Eds.), Proposal Writing for Clinical Nursing and DNP Projects (pp. 45-58). New York: Springer Publishing Company. Brummel, N. E., Jackson, J. C., Girard, T. D., Pandharipande, P. P., Schiro, E., Work, B., ... & Ely, E. W. (2012). A combined early cognitive and physical rehabilitation program for THE ROLE OF OT IN PICS 14 people who are critically ill: The activity and cognitive therapy in the intensive care unit (ACT-ICU) trial. Physical Therapy, 92(12), 1580-1592. doi: 10.2522/ptj.20110414 Elliot, D., Davidson, J. E., Harvey, M. A., Bemis-Dougherty, A., Hopkins, R. O., Needham, D. M. (2014). Exploring the scope of post-intensive care syndrome therapy and care: Engagement of non-critical care providers and survivors in a second stakeholders meeting. Critical Care Medicine, 42(12), 2518-2526. doi: 10.1097/CCM.0000000000000525 Ely, E.W. (2002). Confusion assessment method for the ICU (CAM-ICU): The complete training manual. Vanderbilt University Medical Center. Ely, E. W. (2017). The ABCDEF bundle: Science and philosophy of how ICU liberation serves patients and families. Critical Care Medicine, 45(2), 321. doi: 10.1097/CCM.0000000000002175 Giles, G. M. and Wolf, T. (2017). Occupational therapists functional cognition advantage. OT Practice, 22(5), 1215. Girard, T. D., Jackson, J. C., Pandharipande, P. P., Pun, B. T., Thompson, J. L, Shintani, A. K., Ely, E. W. (2010). Delirium as a predictor of long-term cognitive impairment in survivors of critical illness. Critical Care Medicine, 37(7), 1513-1520. doi: 10.1097?CCm.0b013e3181e47be1 Iwashyna, T. J. (2010). Survivorship will be the defining challenge of critical care in the 21st century. Annals of Internal Medicine, 153(3), 204-205. Jones, C., Skirrow, P., Griffiths, R. D., Humphris, G., Ingleby, S., Eddleston, J., ... Gager, M. (2004). Post-traumatic stress disorder-related symptoms in relatives of patients following intensive care. Intensive Care Medicine, 30(3), 456-460. THE ROLE OF OT IN PICS 15 Lasiter, S., & Boustani, M. A. (2015). Critical care recovery center: Making the case for an innovative collaborative care model for ICU survivors. The American Journal of Nursing, 115(3), 24. Lone, N. I., Gillies, M. A., Haddow, C., Dobbie, R., Rowan, K. M., Wild, S. H., ... Walsh, T. S. (2016). Five-year mortality and hospital costs associated with surviving intensive care. American Journal of Respiratory and Critical Care Medicine, 194(2), 198-208. doi: 10.1164/rccm.201511-2234OC Martinez, F. T., Tobar, C., Beddings, C. I., Vallejo, G., & Fuentes, P. (2012). Preventing delirium in an acute hospital using a non-pharmacological intervention. Age and Ageing, 41(5), 629-634. Martinez, F., Tobar, C., & Hill, N. (2014). Preventing delirium: Should non-pharmacological, multicomponent interventions be used? A systematic review and meta-analysis of the literature. Age and Ageing, 44(2), 196-204. doi: 10.1093/age-ing/afs060 Needham, D.M., Davidson, J., Cohen, H., Hopkins, R.O, Weinert, C., Wunsch, H., & Harvey, M. A. (2012). Improving long-term outcomes after discharge from intensive care unit: Report from a stakeholders conference. Critical Care Medicine, 40(2). doi: 10.1097/CCM.0b013e318232da75 Norman, B. C., Jackson, J. C., Graves, J. A., Girard, T. D., Pandharipande, P. P., Brummel, N. E., ... Ely, E. W. (2016). Employment outcomes after critical illness: An analysis of the bringing to light the risk factors and incidence of neuropsychological dysfunction in ICU survivors cohort. Critical Care Medicine, 44(11), 2003-2009. doi:10.1097/CCM.0000000000001849 THE ROLE OF OT IN PICS 16 Pandharipande, P. P, Girard, T. D., Jackson, J. C., Morandi, A., Thompson, J. L., Pun, B. T., & Ely, E. W. (2013). Long-term cognitive impairment after critical illness. The New England Journal of Medicine, 369(14), 1306-1316. doi:10.1056/NEJMoa1301372 Rogers, A. T., Bai, G., Lavin, R. A., Anderson, G. F. (2016). Higher hospital spending on occupational therapy is associated with lower readmission rates. Medical Care Research and Review, 74(6), 668-686. doi: 10.1177/1077558716666981 Rothenhausler, H., Ehrentraut, S., Stoll, C., Schelling, G., & Kapfhammer, H. (2001). The relationship between cognitive performance and employment and health status in longterm survivors of the acute respiratory distress syndrome: Results of an exploratory study. General Hospital Psychiatry, 23, 90-96. doi: 10.1016/S0163-8343(01)00123-2 Schweickert, W. D., Pohlman, M. C., Pohlman, A. S., Nigos, C., Pawlik, A. J., Esbrook, C. L., ... Schmidt, G. A. (2009). Early physical and occupational therapy in mechanically ventilated, critically ill patients: A randomised controlled trial. Lancet, 373(9678), 18741882. doi: 10.1016/S0140-6736(09)60658-9 Van den Boogaard, M., Schoonhoven, L., Evers, A. W. M., van der Hoeven, J. G., van Achterberg, T, & Pickkers, P. (2012). Delirium in critically ill patients: Impact on longterm health related quality of life and cognitive functioning. Critical Care Medicine, 40(1), 112-118. doi: 1097/CCM.0b013e31822e9fc9 Wang, S., Mosher, C., Gao, S., Kirk, K., Lasiter, S. Khan, S., Khan, B. (2017). Antidepressant use and depressive symptoms in intensive care unit survivors. Journal of Hospital Medicine, 12(9), 731-734. doi: 10.12788/jhm.2814 THE ROLE OF OT IN PICS 17 Appendix A Post-intensive Care Syndrome (PICS) Family (PICS-F) Mental Health: Anxiety, PTSD, Depression, Complicated Grief Survivor (PICS) Mental Health: Anxiety, PTSD, Depression Cognitive Impairments: Executive Function, Memory, Attention, Visuo-spatial, Mental Processing Speed Physical Impairments: Pulmonary, Neuromuscular, Physical Function Post-intensive care syndrome (PICS) conceptual diagram. Needham, D. M., Davidson, J., Cohen, H., Hopkins, R. O, Weinert, C., Wunsch, H., Harvey, M. A. (2012). Improving long-term outcomes after discharge from intensive care unit: Report from a stakeholders conference. Critical Care Medicine, 40(2). doi: 10.1097/CCM.0b013e318232da75 THE ROLE OF OT IN PICS 18 Appendix B Activities for Patients who Score CAM + RASS Score Mobility Protocol Treatment Chair mode in bed, cardiac chair, or sitting EOB Reorient patient Modify environment to regulate sleep cycle (blinds up during the day, lights off at night) Educate family use delirium handout Assist nursing to address patient comfort +1 Progress to bedside chair Reorient patient Coloring pages/ drawing with verbal assist 0 Progress to bedside chair/progress ambulation Reorient patient Easy/moderate crossword/word search/ hidden pictures on laminated paper with assist Coloring pages/ drawing with assist Low challenge games with verbal cues (i.e. tic tac toe, connect four) Trail-making with assist -1 Progress to bedside chair/progress ambulation Reorient patient Coloring pages/drawing with verbal assist +3/+4/+2 THE ROLE OF OT IN PICS -2/-3 Chair mode in bed, cardiac chair, or sitting EOB 19 Reorient patient Modify environment to regulate sleep cycle (blinds up during the day, lights off at night) Educate family use delirium handout Polysensory stimulation Activities for Patients with a History of Delirium RASS Score Mobility Protocol +1 Progress to bedside chair 0 Progress to bedside chair/progress ambulation Cognitive Activities Easy crossword/word search/ hidden pictures on laminated paper with assist Easy/moderate games with verbal assist (dot game, hangman, cards, connect four) Target executive functioning IADL performance (i.e. med management) Moderate challenge games with limited assistance (cards, board games) Moderate challenge crossword/word search (start with assist, progress to independent) Errorless learning/spaced retrieval activities (i.e. remember these 5 names) Goal-directed activities (i.e. goals for rehabilitation, discharge to-do list) Independent activities Coloring books, magazines, books encourage family to bring from home if possible Challenging word searches, crosswords, hidden pictures, logic puzzles Moderate independent games (i.e. solitaire, phone games) Challenging logic puzzles, riddles THE ROLE OF OT IN PICS -1 Progress to bedside chair/progress ambulation 20 Easy crossword/word search/ hidden pictures on laminated paper with assist Easy/moderate games with verbal assist (dot game, hangman, cards, connect four) THE ROLE OF OT IN PICS 21 Appendix C Memory Strategies Using a Daily Planner A planner can help you remember things while your memory skills are still recovering. You can use a notebook, dry erase board, or online templates. Label Items Try labeling cabinets and boxes around your home to remember where important items are. Set Alarms Use your phone, watch, or kitchen appliances to set alarms to remember tasks that need to be completed. Pill Box Set up a pill box (or have a caregiver help you) so that you can remember what pills to take at what time. THE ROLE OF OT IN PICS 22 Appendix D What is Delirium? Delirium is when a person suddenly becomes confused, sees things that arent there, or forgets where they are. Delirium is different than dementia - it happens quickly and can go away quickly. Delirium can happen to anyone, but is more common in older adults. Why is my loved one confused? Around 2 out of every 3 people in the ICU become delirious at some point while they are in the hospital. This can happen after a person uses a breathing machine. It is important to try and reduce how often someone is delirious so that long-term problems with memory and behavior can be prevented. How can I help? Be patient with your loved one. Try to keep the blinds open and lights on during the day, but turn the lights off at night (make sure this is okay with your loved ones nurse). Calmly remind him or her what day it is, where they are, and why they came to the hospital. Bring any glasses, dentures, or hearing aides your loved one uses and make sure he or she is wearing them whenever possible. Bring familiar objects to his or her room (photos, blankets, special objects). After going home Your loved one may go directly home from the hospital or may need to stay at a rehabilitation facility first. Follow up with your primary care provider AND schedule an appointment with the Critical Care Recovery Center at Eskenazi (317-880-2224). More Information: https://www.eskenazihealth.edu/health-services/recovery-center www.icudelirium.org/patients-and-families/overview THE ROLE OF OT IN PICS 23 Appendix E What To Expect After Leaving the Intensive Care Unit (ICU) Being in the ICU for a long time can be stressful. You may leave the hospital and go home right away, or you may need to stay in a rehabilitation facility to get stronger before you can go home. Strength Some people feel weak or have problems with balance and/or completing daily routines after leaving the ICU. You may need to follow up with a physical or occupational therapist to regain these skills. Thinking and Memory Many people notice problems with memory and problem solving after leaving the ICU. Mental Health Many people feel sad, angry, and/or anxious after leaving the ICU. Talk about these symptoms with your primary care provider as soon as possible. If you experience any of these symptoms, talk with your primary care provider and call the Critical Care Recovery Center at (317) 880-2224. THE ROLE OF OT IN PICS 24 Appendix F Survey Questions and Results: 1. I know where to find the cognitive wellness program Activities. a. 82% answered yes, 18% answered no 2. I know which patients are appropriate for the cognitive wellness program activities. a. 100% answered yes, 0% answered no 3. It is feasible to use these activities with some patients. a. Answers provided on sliding scale from 0 to 100 with an average score of 76. 4. I know the referral criteria for the Critical Care Recovery Center. a. 91% answered yes, 9% answered no. 5. I know how to request a referral for the Critical Care Recovery Center. a. 91% answered yes, 9% answered no. 6. I have requested a referral for a patient for the Critical Care Recovery Center. a. 18% answered yes, 82% answered no. 7. Please provide any feedback, suggestions, or further questions you may have. a. Two therapists answered this question with the following responses: i. Great program and presentation. Thanks for gathering all these materials and teaching us about the clinic (which I had no clue even existed!) ii. Thank you for your hard work with this.  ...

... Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 1 Occupational Deprivation with Individuals Experiencing Homelessness, Mental Illness, Substance Abuse and Addiction Marisa Kitt 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: Julie Bednarski, OTD, MHS, OTR Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION A Capstone Project Entitled Title: centered, must be less than 18 words 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 Marisa Kitt 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 Kitt 2 Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 3 Abstract The effect of individuals in our community experiencing both substance use disorders and homelessness impacts and impairs their occupational performance in their everyday lives (McNaughton, 2008). Occupational therapy (OT) can play a vital and unique role with individuals who are experiencing homelessness and substance use disorders utilizing a holistic outlook to help individuals recognize the effects that addiction has on their life and assist in identifying ways to find and utilize meaningful occupations (Rojo-Mota et al., 2017). The purpose of this Doctoral Capstone Experience (DCE) project was to organize and add to the sites resource binder for potential discharge/placement sites to increase the success of the clients journey to sobriety and implement group programming sessions focused on necessary life-skills needed in daily occupations. This paper describes the need for implementation of these projects, the outcomes, and the discontinuation process for quality improvement of services and sustainability following the DCE. Outcomes from completion of the group programming sessions included increased education and understanding of important life skills and growing confidence in future occupational performance. In addition, improved organizational sustainability resulted from completion of updating the sites resource binder through increased advocacy and new partnerships with various recovery homes and resources throughout the community. Upon completion of the DCE the student gained beyond entry level skills in an emerging area of practice with increased confidence with leadership and professionalism. Occupational Deprivation with Individuals Experiencing Homelessness, Mental Illness, Substance Abuse and Addiction The National Alliance to End Homelessness reported that there are approximately 1,682 people experiencing homelessness currently in the city of Indianapolis and approximately 5,438 Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 4 in the state of Indiana (Point in Time Count, 2018). Individuals experiencing homelessness lack involvement in control of the activities or occupations in their daily life from the dependency of factors that are out of their control; hours of operation of various shelters, daily drop-in centers, meal times, medical centers, etc. impacting their overall empowerment of their occupations (Marshall & Rosenberg, 2014). Occupations are described as activities that are performed regularly that an individual does in their daily life to occupy their time (Wasmuth et al., 2015). Individuals experiencing substance-use disorders and addiction result in deficits in occupations throughout their daily life due to the amount of time that is occupied by using drugs or alcohol (Wasmuth et al., 2015). Occupational deficits are important to address to improve overall satisfaction with life (Fisher & Hotchkiss, 2008). Experiencing homelessness can be life changing, which can impact an individuals sense of self or identity and create an occupational imbalance (Marshall & Rosenberg, 2014). A persons identity can be impacted from the experiences an individual endures while being homeless such as; social isolation and decreased availability to engage in typical everyday activities (Marshall & Rosenberg, 2014). An individuals occupational history can be impacted by addiction and substance abuse through changes in their various life roles and the ability to complete their activities of daily living (ADLs) (Rojo-Mota, Pedrero-Perez, & Huertas-Hoyas, 2017). This literature review investigates the relationship between individuals experiencing homelessness, mental illness, suffering from substance abuse and addiction and the possibility for occupational deprivation or relapse in their everyday lives. Theory & Model The model that guided this doctoral capstone experience (DCE) was The Model of Occupational Empowerment. This model describes the importance of occupations in our daily Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 5 life and how this can be empowering for an individuals identity and satisfaction with life (Fisher & Hotchkiss, 2008). This model focuses on five stages including; disempowering environment, occupational deprivation, learned helplessness, occupational empowerment, and occupational change (Fisher & Hotchkiss, 2008). Many individuals enduring homelessness are at least experiencing one aspect of a disempowering environment with problems related to; poverty, substance abuse, physical abuse, violence, legal problems, and limited social support (Fisher & Hotchkiss). Individuals experiencing a disempowering environment typically experience occupational deprivation as well, from a lack of involvement of meaningful occupations in their daily lives (Fisher & Hotchkiss). The Model of Occupational Empowerment was utilized as the center of treatment and education in order for the individuals to gain occupational empowerment and life satisfaction. The frame of reference (FOR) that guided this project was the Psychodynamic FOR. The psychodynamic FOR focuses on improving communication, self-esteem, and self-acceptance (Cole & Tufano, 2008). Interventions throughout the group programming focused on meaningful occupations that helped clients discover their identity and who they are through social participation (Cole & Tufano, 2008). Increasing an individuals self-understanding is important, which impacts their success in daily life by increasing self-esteem, self-acceptance, and selfresponsibility (Cole & Tufano, 2008). Increasing an individuals social skills is important to repair relationships, obtain important life roles and life skills to enhance functioning in their everyday lives and grow in their desired identity (Cole & Tufano, 2008). The Model of Occupational Empowerment and the Psychodynamic FOR created the theoretical framework to guide the individual throughout the transition of experiencing homelessness to no longer being homeless. Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 6 Literature Review Substance Abuse and Addiction Substance use whether alcohol or drugs is a common factor amongst many individuals that are experiencing homelessness (McNaughton, 2008). Individuals describe addiction and the use of substances as a way to escape their current reality (i.e. environmental, social, financial, emotional), or as a way to cope and block out past trauma (McNaughton, 2008). Individuals that have experienced homelessness may lose their sense of self or identity due to increased isolation throughout their daily living situation of being homeless and living on the streets (McNaughton, 2008). Losing their sense of identity may increase their feelings of emptiness and the fear of the unknown of their daily routine which can also create a sense of boredom leading these individuals to use substances (McNaughton, 2008). Addiction has been described as being an occupation itself due to how it occupies an individuals time in their daily life impacting their involvement in other occupations creating occupational deprivation (Rojo-Mota et al., 2017). Addiction can be addressed from an occupational level due to the impact it has on change in an individuals daily life roles and participation in typical daily activities (Rojo-Mota et al., 2017). There is a need for support to assist individuals in developing different coping strategies other than using drugs or alcohol, such as; counseling, having a sponsor, creating new healthy hobbies, exercising, etc. any meaningful occupations (McNaughton, 2008). Occupation-based approaches can help individuals who are experiencing substance use disorders understand the benefits of how engagement in various healthy occupations can impact their overall well-being (Wasmuth et al., 2015). The potential for developing new coping strategies could be a large step in their recovery, preventing relapse, and transitioning out of homelessness. Transitioning from Homelessness Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 7 Throughout the transition from homelessness to becoming housed, it may be necessary to provide individuals with support to create a positive sense of their identity of themselves (Marshall & Rosenberg, 2014). It is important to know that when working with this population throughout this transition there is an opportunity for growth in learning life skills and approaches to utilize for solving typical life problems (Wasmuth et al., 2015). Individuals that experience homelessness may have lost the knowledge of what typical occupations are appropriate to engage in and are required to independently function as a person who is not living on the streets and may need support or guidance throughout this transition (Marshall & Rosenberg, 2014). The transition from homelessness to being housed is often related to obtaining employment (Poremski, Whitley, & Latimer, 2014). The main barriers to obtaining employment are related to substance abuse, past criminal record, shelter rules, and adequately being able to obtain psychiatric care (Poremski, Whitley, & Latimer, 2014). To assist this population in gaining employment and initiate increasing other daily occupations, it is important to address selfstigmatization and anxiety about past criminal records and the importance of staying sober (Poremski, Whitley, & Latimer, 2014). Addressing these areas of concern will in result build a more stable environment around a schedule with meaningful activities. Occupational Therapy with the Homeless Population Maximize health, well-being, and quality of life for all people, populations, and communities (AOTA, 2017, p.7103420010p1) this describes the American Occupational Therapy Associations Vision 2025, inviting the profession of Occupational Therapy (OT) to achieve this vision through working with underserved populations such as individuals experiencing homelessness, mental illness, substance abuse and addiction. It is essential for occupational therapists to focus on what the barriers are for individuals experiencing Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 8 homelessness that are limiting their opportunities for participating in various occupations (Roy, Valle, Kirsh, Marshall, Marval, & Low, 2017). Occupational therapy interventions have been found to be successful in improving performance in occupations and overall well-being for individuals with a diagnosis related to mental health (Ikiugu, Nissen, Bellar, Maassen, & Van Peursem, 2017). Occupational performance skills, also known as life skills are important to be addressed with individuals that are experiencing homelessness or are transitioning out of homelessness (Roy et al., 2017). Specific occupational performance skills that are necessary to address are; financial management, employment skills, nutrition, general health and wellness, social participation, home management, and participation throughout the community (Roy et al., 2017). The Occupational Therapy Practice Framework, 3rd Edition (2014) discusses the specific skills that are involved in occupations that are a part of activities of daily living (ADL)/instrumental activities of daily living (IADL) in which occupational therapists as a profession focus on. Occupational Justice and Empowerment Occupational justice focuses on the ability to recognize that occupational rights are important for every individual regardless of their age, ability, gender, socioeconomic status, or any other differences (Nilsson & Townsend, 2014). Occupational rights are described as the idea that every individual is meant to be an occupational being and able to participate in occupations to connect socially with others and be a part of a community (Nilsson & Townsend, 2014). Occupational rights focus on enabling individuals to participate in occupations that are meaningful to them resulting in occupational justice (Durocher, Gibson, & Rappolt, 2014). Many individuals that experience homelessness may experience increased social isolation (Marshall & Rosenberg, 2014). Occupational alienation is described as an increased time of being isolated, Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 9 disconnected, and lack of knowing ones identity, this can lead to occupational deprivation (Durocher, Gibson, & Rappolt, 2014). Empowerment can be described as supporting one another in the process of developing independence to make healthy productive decisions throughout everyday tasks (Fisher & Hotchkiss, 2008). Empowering individuals by providing a supportive environment and opportunities to make their own choices through developing a positive selfidentity can lead to a healthy occupational change (Fisher & Hotchkiss, 2008). Empowerment provides a connection between individual engagement in occupations that are meaningful and overall well-being (Fisher & Hotchkiss, 2008). A healthy occupational change can lead to an increased satisfaction with life. Project Aim As shown in the literature, an individual experiencing homelessness with substance abuse and possibly a mental health diagnosis experience a wide variety of issues related to their occupational deprivation in their daily lives. Because the researchers found that having stable housing and support on engaging in typical life skills (Roy et al., 2017) and support to create a positive sense of their identity of themselves (Marshall & Rosenberg, 2014), the project aimed to create various group programming to engage individuals in daily life skills that are experiencing homelessness and substance abuse. The Reuben Engagement Center (REC) takes in clients who are homeless or at risk for homelessness and are experiencing substance use disorders. REC focuses on getting clients detoxed, medically stable, connected to services, and then transitioned to placement at a recovery home to continue their journey into sobriety. In addition, this project aimed to complete research to ensure that there are various discharge/placement options for individuals to go to and receive supportive housing after detox that are the best fit for them to be successful at. The programming provided education about various life skills and daily Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 10 occupations, while also enhanced their social participation. Individuals experienced ways to utilize life skills which empowered their occupations and understanding of their identity with sobriety and enhanced the quality of life for individuals in this population. Screening and Evaluation To analyze and assess the needs of REC, the review of literature, a needs assessment, and comparing the strengths/weaknesses/opportunities/threats (SWOT) analysis were utilized as the evaluation framework. The needs assessment was completed first through discussion between the occupational therapy student, two resource coordinators, and the executive director of REC. From the completion of the needs assessment, it was found that there are needs or gaps between the current condition of the site and the desired condition. The SWOT analysis was also completed throughout this discussion to determine the identified strengths and opportunities to overcome weaknesses and threats and decide the needs of the doctoral capstone experience (DCE). The completion of a SWOT analysis evaluates the strengths/weaknesses (internal factors) and opportunities/threats (external factors) that are within a program or organization (Van Wijngaarden, Scholten, & Van Wijk, 2012). A SWOT analysis is appropriate to focus on a programs strengths, minimize threats and take opportunities to improve weaknesses (Van Wijngaarden et al., 2012). After the needs assessment and discussion were completed, the SWOT analysis was completed. It was determined that REC would benefit from adding to the sites resource binder for potential future discharge/placement sites for the clients and implementation of programming with the clients to increase the benefits of their time spent at the facility. Refer to Appendix A for details of the SWOT analysis. There was an identified need to organize and add to the facilitys resource binder by reaching out to various discharge/placement sites (recovery homes) and Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 11 update information on each recovery home. This was an essential part of the DCE because the facility has a lack of employees to fulfill this need due to having only two full-time resource coordinators who are extremely busy with the number of clients they work with on a daily basis. It was important to make new connections to various recovery homes and re-engage the relationships that have previously been made with various recovery homes. By doing this, it decreased the amount of readmission rates and ensured that clients were discharged to sites that they would be most successful at based on their characteristics and what that site provides. The site expressed other concerns in regard to funding and transportation. REC has already focused their efforts on these concerns and has found answers to solve these problems through grant funding and receiving their own car to utilize as transportation for the clients therefore this was not a focus on the DCE project. The capstone student focused efforts on client programming and updating the sites resource binder while making new connections with recovery homes or reengaging the relationships already made with various recovery homes. To bring attention to the concept of addiction as an occupation, many individuals with addiction are unaware of how to replace their addiction with occupations that are healthy (RojoMota et al., 2017). Individuals who are experiencing homelessness and have a substance use disorder have difficulties with experiencing increased social isolation and loss of self-identity, impacting their ability to utilize healthy coping strategies often referring to drugs or alcohol (McNaughton, 2008). Many clients at REC benefitted from group programming on various topics related to; coping skills, stress management, time management, health & wellness, and community resources which increased their social interaction and knowledge in these areas. Occupational rights are to ensure that every individual is able to participate in occupations that are meaningful to them and persons experiencing homelessness and are suffering from substance Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 12 use disorders may be experiencing occupational injustices (Durocher, Gibson, & Rappolt, 2014). It is important to address these injustices, empower and support individuals to make occupational changes during this vulnerable time in their lives. Throughout the transition of an individual experiencing homelessness to being housed, REC is the middle-man in this process. Throughout this transition it is important to take advantage of this opportunity for these clients to develop growth in learning life skills to use throughout solving typical life problems (Wasmuth et al., 2015). The individuals at REC benefitted from learning life skills and daily healthy occupations to utilize throughout this transition, which was implemented throughout various group programming sessions that addressed this need. Evaluation tools that are used are dependent on the occupational therapy practice area and setting, due to the various populations and their specific needs. Due to REC being an entity of the City of Indianapolis and does not have a licensed occupational therapist on staff, it was determined that it was not appropriate throughout this DCE to complete individualized or group occupational therapy evaluations of the clients. It was appropriate to screen and evaluate REC as a whole through an occupational therapy lens to meet the needs of the facility and the population served in order to facilitate program planning and implementation. According to the Occupational Therapy Framework (2014), as a profession OTs are trained to determine what needs to be focused on to most appropriately treat the population that is being served. It is important to meet their current specific needs whether that is focused on occupations, client factors, performance skills, performance patterns, or context and environment. Due to it not being appropriate to complete individual or group occupational therapy evaluations of the clients, pre/post outcome measures were implemented before and after each group programming session. These pre/post outcome measures used an occupational therapy lens and were utilized to Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 13 ensure that the programming was effective and client centered. Maintaining a holistic view was an overall theme from an occupational therapist point of view throughout all screening and evaluation strategies that were completed. It was important to focus on the client or population and what fits their needs best, improving ones overall wellbeing. Implementation The screening and evaluation process at REC first indicated the need for implementation to organize and add to the sites resource binder for potential discharge/placement sites to increase the success of the clients journey to sobriety. Second, it was indicated the need for implementation of group programming sessions focusing on necessary life-skills needed in daily occupations. Resource Binder The resource binder at REC includes various recovery homes in the Indianapolis area and surrounding communities and states. Prior to the start of the DCE the binder was disorganized and did not include up to date information. Per the needs assessment this was due to the lack of time that staff had, they were unable to continuously update the information. To meet the need to organize and update the sites resource binder, the student created an online questionnaire that was sent electronically to over a 100 different recovery homes throughout the surrounding communities and states. The questionnaire was created through a collaboration between the two resource coordinators at REC and the student. Refer to Appendix B for details, included questions. Group Programming To meet the need to implement group programming sessions, the student created group programming focusing on coping skills, stress management, time management, community Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 14 resources, and the seven dimensions of wellness addressing overall health and wellness. Program topics were determined based on evidence from the literature and interviews with employees at REC including the resource coordinators and the executive director. To create the group sessions, the student created group modules from completed research and course work. Group protocols were then developed for each group which included structure of group, educational materials, and activities (Cole & Tufano, 2008). The student implemented groups twice per week and topics changed each week. Due to REC typically being a short-term length of stay facility the group sessions were not repetitive for the clients. Group sessions were voluntary for the clients to attend, by keeping the sessions voluntary the student discovered the groups were impactful and intimate resulting in the clients opening up more and thoroughly learning about each topic being discussed. On average, there were five to ten group members that attended each session. The group format consisted of the student leading the group utilizing the guideline that was created for each group topic, providing handouts for the group members to follow along, and having an open discussion throughout each group activity. To provide carry over for client education, the group members were given a handout over each group topic that they were able to keep after the session was over and the student was always available for questions. To measure if the group sessions were impactful for the individuals who attend, a pre/post outcome measure was used for clients to self-report before and after each session. Refer to Appendix C for details of each outcome measure. Leadership Beginning the DCE in an emerging field at a facility poised for growth being a newer facility and having to advocate for occupational therapy, leadership skills were expected to be a Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 15 large part of the project. To conduct successful outcomes for the projects being implemented at REC, it was required that I become involved as a representative of REC throughout the community. To make connections that allow opportunities for new partnerships or re-engaging relationships that have already been made would be an essential part of meeting the need to update the facilitys resource binder. To meet this need it was necessary for me to reach out to various recovery homes in the community of Indianapolis and even in surrounding communities and states. Through collaboration with both of the resource coordinators at REC, we created an online questionnaire that I sent to many recovery homes. The questionnaire was focused to address the details of each site so that REC would have the most reliable and updated information to make the discharge process adequate and successful. To do this I had to increase my leadership skills to be able to professionally reach out to various sites and improve my communication skills through email, discussions over the phone, and face to face meetings. The various meetings with potential new discharge/placement sites involve a great deal of collaboration between the site and their employees, the resource coordinators at REC, and myself to discuss how we could implement and create a future partnership to benefit one another. A strong review of the research was required in order to gather the most updated information on the community resources available and have the knowledge of what recovery homes are available in Indianapolis, surrounding communities and out of state. The DCE required organizational skills, time management, and the ability to advocate for the facility in order to complete the necessary components in a timely manner. The implementation of group programming sessions required leadership through creating new experiences and practice of my leadership skills. It required an independent shift from a role as a student to the role as a leader and teacher for the various group programming sessions. To Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 16 fulfill my role as a leader throughout each group session, I have had to grow in my ability to be confident and competent in all of the educational material provided throughout the various groups. This has required organizational skills, plenty of research, and the ability to be confident while continuously learning about my leadership skills. To best meet the needs of the participants in the moment, I have had to have good listening skills, be flexible, open-minded, and provide consistent empathy as the leader throughout each group session. Staff Development Promoting staff development and increasing the opportunities available for staff was an important aspect throughout the DCE. Collaboration between the two resource coordinators at REC and myself was an essential part of staff development. Throughout the process of updating the sites resource binder and creating new partnerships with recovery homes we increased the success of the clients discharge process. To promote staff development, I created a group programming binder that included all of the group sessions that I have implemented with a guideline to follow for each session along with tips to utilize on the various topics being addressed. The student educated and presented the group programming binder to the staff at REC during the last week of the DCE to encourage future use for the employees to implement the group sessions with the clients. The presentation included the results from the outcome measures that I implemented from each session to demonstrate that the clients improved their knowledge over each of the topics that were discussed. As a result, this presentation will increase the awareness and importance of the group sessions and demonstrated the need for implementation of groups focused on necessary life-skills needed in daily occupations for this population. Discontinuation and Outcomes Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 17 The main focus of this DCE was program planning, providing education, ensuring quality services, and increasing organizational sustainability with the use of the resource binder at REC. After determining the needs of the facility and completing a literature review to assess needs in regard to the population being served, it was determined that creation of group programming sessions specific to needs of the population and organizing the sites resource binder would fulfill the goals of the DCE project and needs of REC. It was necessary to plan accordingly and utilize collaboration skills with REC staff to provide and include continuous quality improvement (QI) within the programs and ongoing sustainability following the completion of the DCE. QI is an ongoing process involving multiple components such as reflecting and evaluating, receiving feedback, teamwork, and responding to changing needs in order to improve the health of the community (Bonnel and Smith, 2018). Outcome Measure Analysis To incorporate QI and ensure improved practice, creating and completing outcome measures for the different implemented group program sessions was necessary. Outcome measures are a vital part of QI for they allow individuals to assess the effectiveness and benefits of programs; they can help identify challenges and areas of improvement. Completion of outcome measures allows one to identify appropriate modifications to best fit the needs of the population being served. Refer to Appendix D for the outcome measure results. In addition, creating and completing a goal attainment scale (GAS) to address the improvement of the sites resource binder was necessary to ensure QI. The student had the two resource coordinators complete the GAS, and both rated the student much more than expected for each of the goals. Refer to Appendix E for the GAS. Group Programming Sessions Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 18 Group programming sessions focused on coping skills, stress management, time management, community resources, and the seven dimensions of wellness addressing overall health and wellness. The overall goal of the group programming sessions was to assist the clients at REC to learn and practice life skills to improve their occupational performance in their daily life. Throughout implementation of these group sessions, the student had oversite supervision from the site mentor who is a registered occupational therapist (OTR). Each of the sessions included a pre/post outcome measure, the participants could respond to the survey questions with strongly disagree, disagree, neither disagree or agree, agree, or strongly agree. Outcome measure results from all of the sessions: coping skills, stress management, time management, community resources, and the seven dimensions of wellness showed increased improvement from pre/post. All of the post outcome measure results showed either 100% agree/strongly agree or 100% neither disagree or agree/agree/strongly agree, showing an overall increased improvement of knowledge from each of the sessions implemented. Refer to Appendix D. There was an additional verbal discussion at the end of each session to clarify if there were any questions or concerns. The session focused on coping skills created discussion over healthy versus unhealthy coping skills. Group members discussed the definition of coping skills and situations where they utilized unhealthy coping skills and how they could have changed that situation by reacting with healthy coping skills. Individuals were educated on how healthy coping skills may not provide an instant gratification but can lead to long-lasting positive outcomes that are not harmful to them unlike the results from utilization of unhealthy coping skills. Group members created their own personal lists of healthy coping skills that to utilize, then group members participated in a recreational game of bingo themed with coping skills. At the beginning of the first session, 50% Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 19 of the clients disagreed stating that they couldnt identify healthy vs unhealthy coping skills and at the end of the session 100% agreed/strongly agreed that they could do this. The session addressing stress management included an educational activity discussing the five things everyone should know about stress from the National Institute of Mental Health. Group members discussed ways they typically manage stress and if they are healthy or unhealthy. The student led the group members through several stress management techniques including: deep breathing exercises, meditation, body scan, guided imagery, and discussed simple yoga poses. Group members completed a worksheet called the not to do list directed to organize and discuss when individuals feel overwhelmed it is important to decipher and prioritize daily tasks. The student led a discussion over the importance of finding healthy hobbies to manage stress, including writing in a journal. Group members discussed various prompts that were given to initiate and encourage writing as a future tool to utilize to manage stress. At the start of the session, 37.5% of clients disagreed stating that they could not identify positive vs negative stress management techniques and at the end of the session, 37.5% agreed that they felt they could identify the different techniques. The time management session focused on defining what time management is and in what ways individuals can improve their time management skills. The student educated the group members on three general types of time: predictable time, discretionary time, and other-imposed time. Group members discussed how they can improve in their time management skills by getting organized, making lists, and keeping a daily planner. Then the student led the group members through an activity of two different time management worksheets that were created by the student; one being a structured tool to utilize by planning out daily tasks by the hour seven days a week and the other being less structured by making daily goals and lists to accomplish Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 20 each day. Group members reported at the start of the session that 100% disagreed stating that they are unable to identify two strategies to utilize to improve their time management with daily tasks, at the end of the session 100% agreed/strongly agreed that they are able to do this. The student led a session focused on community resources utilizing the 2019 Handbook for Help from the Coalition for Homelessness Intervention and Prevention. Group members discussed the importance of knowledge of community resources and how this is beneficial to know. The student educated on the resource of calling the number 2-1-1 for any social service needs that is available to their use at any time. Dialing this number will connect individuals to an operator to ask about various resources in their community to meet their social service needs. The student educated the clients on the community resources handout that was created for individuals to utilize in the future. The community resources handout included daily hot meals with locations and times, food pantries, clothing pantries, various shelters, low cost clinics, veteran resources, domestic violence and sex trafficking resources, assistance with receiving food stamps, birth certificate, and state ID. Group members discussed the importance of utilizing the community resources handout in the future. At the beginning of the session, 71.5% of the group members reported that they disagreed/strongly disagreed stating that they do not have a good understanding of what community resources are available to them and by the end of the session 100% agreed/strongly agreed that they understood this. The seven dimensions of wellness session focused on overall health and wellness (Seven Dimensions of Wellness, 2018). The student educated on each of the dimensions of wellness which include; physical, emotional, intellectual, social, spiritual, environmental, and occupational (Seven Dimensions of Wellness, 2018). After the description of each dimension, group members filled out their own self-rating seven dimensions scale. Group members then had Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 21 the opportunity to share how they rated themselves and why they chose to rate themselves differently in specific dimensions. After individuals had the opportunity to share, group members discussed how they could improve their satisfaction in each of these areas. Group members reported that 83% disagreed/strongly disagreed stating that they did not understand the benefits of knowing the seven dimensions of wellness or felt that they did not have a good understanding of this topic, by the end of the session 100% agreed/strongly agreed. Through completion of the group programming sessions, outcome measures, and review of feedback, it was determined that the group sessions were successful and beneficial to implement. The updated group programming resource binder was created and updated for future use of the REC staff. QI was utilized through the curriculum to adjust the material to better meet the participants needs throughout each session, provide increased education, and increase the effectiveness for future use. Leadership Training The OT student led multiple training sessions with the REC staff covering the information provided in each of the group sessions. The group programming resource binder was created for the REC staff to have the opportunity to implement the group sessions at their own discretion in the future. The student presented during the last week of the DCE and gave the REC staff an opportunity to ask questions or speak of any concerns. The audience for the presentation consisted of the two resource coordinators, executive director, and site mentor. The presentation consisted of describing the purpose of the DCE and the students goals for each of the projects completed. The student discussed what tasks were completed to ensure the quality of these projects. The site resource binder and group programming binder were presented. The staff at Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 22 REC were provided with these binders and a flash drive that consists of all the information utilized for these projects for the sites future use. Societal Need The projects and experiences implemented throughout the DCE addressed a societal need. Working with the REC staff and participating in weekly Outreach services in the community focused on hands on experiences at a societal level. Outreach services include multiple different professional disciplines working together and bringing resources into the community to various homeless camps and individuals living on the streets. Resources include: blankets, food, medical services, housing applications, financial applications, and simply building rapport with individuals in the community. Societal needs have been met by reaching out to various recovery homes in the community, engaging new partnerships for future use of the REC staff for the individuals to no longer be living on the street and start their path to recovery. The overall goal of the group programming sessions was to educate and practice life skills to improve the individuals occupational performance in their daily lives once they leave REC addressing societal needs at a community level. Ensuring Quality Practice By providing education, resources, and training in multiple ways this ensured quality of practice to promote accurate carryover following completion of the DCE. Implementing a variety of group programming sessions, updating the sites resource binder, and participating in Outreach services allowed the ability to meet societys changing needs from various angles and perspectives with this population. As part of the DCE it was important to incorporate OT, which was initiated immediately utilizing an occupation-based model to assess the needs and guide the implementation phase of the program. Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 23 Overall Learning Communication was a key component to being effective in my leadership skills throughout all aspects of the DCE. Within all the completed projects, I was required to utilize different forms of communication with a variety of individuals and circumstances. During the group programming sessions, it was important to be able to demonstrate verbal and non-verbal communication to provide empathy and sincerity to build rapport and connect with the individuals who are in such a vulnerable state. It was necessary to provide efficient and professional written communication via email and through the online questionnaire that was created to send to various recovery homes. Oral communication was needed to provide professionalism and confidence through phone calls, face to face interviews, and leading groups to provide education and awareness. This experience has allowed me to advocate for the OT profession as a whole and show by example how it could be beneficial when working with this population. The DCE allowed me to advocate and be able to explain the profession of OT to various populations and professionals, it has required speaking clinically and in laymans terms. This skill will be beneficial for use in future practice. Completing the DCE at REC was highly beneficial to me, personally and professionally. Through the time spent at the facility, I was able to further develop and gain skills such as effective communication, building rapport, empathy, time management skills, and leadership skills. Working directly with individuals currently experiencing substance use disorders and homelessness has provided the chance to improve my client-centered skills and flexibility in both direct and indirect service delivery. Multiple times I had to adjust and adapt the plan to accommodate for the in-the-moment needs while maintaining client-centered, occupation-based, Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 24 and evidenced-based services. The projects I collaboratively created and implemented immensely increased my leadership skills and confidence in myself as a professional. The population REC serves allowed me to see hands on how the environment plays a significant role with ones occupational performance. Often times during the DCE it was stated the importance for individuals to change their people, places, and things to improve their environment and support to decrease the likelihood of relapse. Whether it was intended to be or not, to me that is highly occupation-based. The skills developed and improved during the DCE at REC have brought me to a new level professionally and personally. Experiences and skills built throughout the time spent at REC and in the community, can carry over to future practice. Therapeutic use of self, open-mindedness, empathy, and being nonjudgmental in all situations are priceless life skills that have improved with my leadership skills as a future clinician as part of completion of the DCE. Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 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. American Occupational Therapy Association. (2017). Vision 2025. American Journal of Occupational Therapy, 71, 7103420010pl. https://doi.org/10/5014/ajot.2017.713002 Bonnel, W. & Smith, K.V. (2018). Proposal writing for clinical nursing and DNP projects, Second edition. New York: Springer Publishing Company. Cole, M. B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK, Inc. Durocher E., Gibson B., & Rappolt S. (2014). Occupational Justice: A Conceptual Review, Journal of Occupational Science, 21:4, 418-430, DOI: 10.1080/14427591.2013.775692 Fisher, G. S. & Hotchkiss, A. (2008). A model of occupational empowerment of marginalized populations in community environments. Occupational Therapy in Health Care, 22(1),55-71. doi: 10.1300/J003v22n01_05 Five Things You Should Know About Stress. National Institute of Mental Health Publication. Retrieved from: www.nimh.nih.gov/health/publications/stress/index.shtml Handbook for Help (2019). Coalition for Homelessness Intervention and Prevention (CHIP). Retrieved from: www.chipindy.org Ikiugu, M. N., Nissen, R. M., Bellar, C., Maassen, A., & Van Peursem, K. (2017). Centennial TopicsClinical effectiveness of occupational therapy in mental health: A meta-analysis. American Journal of Occupational Therapy, 71, 7105100020. https://doi.org/10.5014/ajot.2017.024588 Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 26 McNaughton, C. C. (2008). Transitions through homelessness, substance use, and the effect of material marginalization and psychological trauma. Drugs: Education, Prevention & Policy, 12(2), 177-188. https://doi.org/10.1080/09687630701377587 Marshall, C. A., & Rosenberg, M. W. (2014). Occupation and the process of transition from homelessness. Canadian Journal of Occupational Therapy, 81(5), 330 338. https://doi.org/10.1177/0008417414548573 National Alliance to End Homelessness (2018). The state of homelessness in America. Retrieved from https://endhomelessness.org/homelessness-in-america/homelessness-statistics/stateof-homelessness-report/ Nilsson, I., & Townsend, E. (2014). Occupational justice-bridging theory and practice. Scandinavian Journal of Occupational Therapy, 21(Sup1), 64-70. doi:10.3109/11038128.2014.952906 Point in Time Count (2018). National Alliance to End Homelessness. Retrieved from https://endhomelessness.org/resource/2018-point-in-time-counts/ Poremski, D., Whitley, R., & Latimer, E. (2014). Barriers to obtaining employment for people with severe mental illness experiencing homelessness. Journal of Mental Health (abingdon, England), 23(4), 181-5. doi:10.3109/09638237.2014.910640 Rojo-Mota, G., Pedrero-Perez, E. J., & Huertas-Hoyas, E. (2017). Centennial Topics Systematic review of occupational therapy in the treatment of addiction: Models, practice, and qualitative and quantitative research. American Journal of Occupational Therapy, 71, 7105100030. https://doi.org/10.5014/ajot.2017.022061 Roy, L., Valle, C., Kirsh, B. H., Marshall, C. A., Marval, R., & Low, A. (2017). Occupation- Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 27 based practices and homelessness: A scoping review. Canadian Journal of Occupational Therapy, 84(2), 98110. https://doi.org/10.1177/0008417416688709 Schultz-Krohn W., & Tyminski Q. (2018). Community-built occupational therapy services for those who are homeless. American Journal of Occupational Therapy, Retrieved from https://www.aota.org/ Seven Dimensions of Wellness (2018). Grand Rapids Community College, Retrieved from https://www.grcc.edu/humanresources/wellness/sevendimensionsofwellness Wasmuth, S. L., Outvalt, J., Buck, K., Leonhardt, B. L., Vohs, J., & Lysaker, P. H. (2015). Metacognition in persons with substance abuse: Findings and implications for occupational therapists. Canadian Journal of Occupational Therapy, 82(3), 150-159. https://doi.org/10.1177/0008417414564865 Van Wijngaarden, J. D., Scholten, G. R. and Van Wijk, K. P. (2012). Strategic analysis for health care organizations: the suitability of the SWOT-analysis. Internal Journal of Health Planning and Management, 27: 34-49. doi:10.1002/hpm.1032 Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 28 Appendix A SWOT Analysis Grid of The Reuben Engagement Center (REC) STRENGTHS - What strength does your organization have? What can you offer that other organization do not? What is unique about your organization? Community support A city entity run by the city/funded by the city Voluntary center clients are at the facility seeking help/treatment voluntarily Ability to get clients medically stable throughout their detox Well connected in the Indianapolis Area Ability to connect clients to various resources (mental health, recovery home/treatment, meetingsAA, NA, CA, recovery yoga) OPPORTUNITIES - What good opportunities can you spot? What interesting trends are you aware of? Grants Partnering with other agencies to provide more services / fundraising / volunteer work Continuously growing making new connections inside/outside of Indianapolis area strengthen those relationships with various sites Provide more tasks/programs for the clients to participate in at the center WEAKNESSESS What could you improve? What should you avoid? What are people in your market likely to see as weaknesses? What factors negatively impact your organization? Lack of funding and resources for the clients programming, clothing (winter coats and shoes) Transportation issues Connections for recovery homes/programs out of state/Indianapolis area knowing specific details of each to have a clear understanding of what clients would be most successful at each site Budgeting Lack of grants Lack of support THREATS What obstacles do you face? What are your competitors doing? Could any of your weaknesses seriously threaten your business? Lack of funding to provide several resources for clients/transportation/programming Financial transparency Burnout in staff Not able to always follow clients after discharge due to limited amount of staff / time to follow all clients Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Appendix B Reuben Engagement Center Questionnaire Recovery House Name? House Address? Primary Contact for Client Referrals o Phone and Email Recovery works Provider? o Yes or No Rent amount description o Cost? Weekly or Monthly? Do you accept grant payment funding? o Example: COT/SORRT/IHOST, etc. Number of beds at the facility o Clarify if available for Men or Women? Does your facility accept transgender clients? Does your facility accept clients on MATs treatment? o If so, suboxone, vivitrol, methadone, etc. Treatment/Services Offered? Are there case management services provided at your facility? Can a client be on GPS or house arrest at your facility? o Yes or No What is the intake criteria at your facility? Does your facility take clients with a mental health diagnosis? o If so, are there any restrictions on diagnoses that you will not accept? Does your facility accept RSOs (Registered Sex Offender)? o Yes or No Are medications allowed? o Yes or No If they are allowed are they self-administered or administered by staff? Are meals provided, if so how many meals a day? What are available transportation options for clients at your site? Is your site close to a bus stop? o Yes or No Is the client able to work while at your facility? o Yes or No What is the maximum length of stay at your facility? Are clients held to a daily schedule, if so can you describe it? Additional Comments/Important Information Kitt 29 Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 30 Appendix C Outcome Measures Coping Skills To be completed at the beginning and end of each session. OUTCOME MEASURE 1 = strongly disagree, 2 = disagree, 3 = neither disagree or agree, 4 = agree, 5 = strongly agree I have a good understanding of what coping skills are. 1 2 3 4 5 I understand the benefits of using healthy coping techniques. 1 2 3 4 5 I can identify healthy vs unhealthy coping techniques. 1 2 3 4 5 I can identify five healthy coping techniques. 1 2 3 4 5 I can identify two situations where healthy coping techniques would be appropriate. 1 2 3 4 5 Stress Management To be completed at the beginning and end of each session. OUTCOME MEASURE 1 = strongly disagree, 2 = disagree, 3 = neither disagree or agree, 4 = agree, 5 = strongly agree I have a good understanding of what stress management is. 1 2 3 4 5 I understand the benefits of using stress management techniques. 1 2 3 4 5 I can identify positive vs negative stress management techniques. 1 2 3 4 5 I can identify five positive stress management techniques. 1 2 3 4 5 Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 31 I can identify three situations where stress management techniques would be appropriate. 1 2 3 4 5 Time Management To be completed at the beginning and end of each session. OUTCOME MEASURE 1 = strongly disagree, 2 = disagree, 3 = neither disagree or agree, 4 = agree, 5 = strongly agree I have a good understanding of what time management is. 1 2 3 4 5 I understand the benefits of using time management techniques. 1 2 3 4 5 I can identify two strategies to utilize to improve my time management with daily tasks. 1 2 3 4 5 Community Resources To be completed at the beginning and end of each session. OUTCOME MEASURE 1 = strongly disagree, 2 = disagree, 3 = neither disagree or agree, 4 = agree, 5 = strongly agree I have a good understanding of what community resources are available to me. 1 2 3 4 5 I understand the benefits of having knowledge of various community resources. 1 2 3 4 5 I can identify five different community resources that could be beneficial for me. 1 2 3 4 5 I know where to look to find community resources that I could potentially need in the future. 1 2 3 4 5 Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 32 7 Dimensions of Wellness To be completed at the beginning and end of each session. OUTCOME MEASURE 1 = strongly disagree, 2 = disagree, 3 = neither disagree or agree, 4 = agree, 5 = strongly agree I have a good understanding of what the 7 dimensions of wellness are. 1 2 3 4 5 I understand the benefits of knowing what the 7 dimensions of wellness are and applying it to my life. 1 2 3 4 5 I feel confident in improving my satisfaction in the 7 dimensions of wellness in my life. 1 2 3 4 5 I can identify three techniques to utilize to improve in areas throughout my 7 dimensions of wellness. 1 2 3 4 5 Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 33 Appendix D Outcome Measure Results Rate from 1-5 (1 = strongly disagree, 2 = disagree, 3 = neither disagree or agree, 4 = agree, 5 = strongly agree) Coping Skills Session 1 Outcome Survey Results: Pre-Test 1. I have a good understanding of what coping skills are. 2. I understand the benefits of using healthy coping techniques. 3. I can identify healthy vs unhealthy coping techniques. 4. I can identify five healthy coping techniques. 5. I can identify two situations where healthy coping techniques would be appropriate. Post-Test 1. I have a good understanding of what coping skills are. 2. I understand the benefits of using healthy coping techniques. 3. I can identify healthy vs unhealthy coping techniques. 4. I can identify five healthy coping techniques. 5. I can identify two situations where healthy coping techniques would be appropriate. Coping Skills Session 2 Outcome Survey Results Pre-Test 1. I have a good understanding of what coping skills are. 2. I understand the benefits of using healthy coping techniques. 3. I can identify healthy vs unhealthy coping techniques. 4. I can identify five healthy coping techniques. 100% agree/strongly agree 100% agree/strongly agree 33% strongly agree 50% disagree 17% neither disagree or agree 33% strongly disagree 33% strongly agree 17% neither disagree or agree 17% disagree 50% strongly agree 33% disagree 17% neither disagree or agree 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree 72% agree 14% strongly agree 14% disagree 58% agree 14% strongly agree 14% disagree 14% strongly disagree 43% agree 29% neither disagree or agree 14% disagree 14% strongly disagree 43% agree Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION 5. I can identify two situations where healthy coping techniques would be appropriate. Post-Test 1. I have a good understanding of what coping skills are. 2. I understand the benefits of using healthy coping techniques. 3. I can identify healthy vs unhealthy coping techniques. 4. I can identify five healthy coping techniques. 5. I can identify two situations where healthy coping techniques would be appropriate. Stress Management Session 1 Outcome Survey Results: Pre-Test 1. I have a good understanding of what stress management is. 2. I understand the benefits of using stress management techniques. 3. I can identify positive vs negative stress management techniques. 4. I can identify five positive stress management techniques. 5. I can identify three situations where healthy stress management techniques would be appropriate. Kitt 34 29% strongly disagree 14% disagree 14% neither disagree or agree 43% neither disagree or agree 29% agree 14% strongly agree 14% strongly disagree 43% strongly agree 43% agree 14% neither disagree or agree 43% neither disagree or agree 28.5% agree 28.5% strongly agree 43% agree 43% strongly agree 14% neither disagree or agree 100% agree/strongly agree 43% agree 28.5% strongly agree 28.5% neither disagree or agree 25% strongly agree 25% agree 25% neither disagree or agree 25% disagree 50% neither disagree or agree 25% agree 12.5% strongly agree 12.5% disagree 37.5% neither disagree or agree 37.5% disagree 12.5% agree 12.5% strongly disagree 37.5% neither disagree or agree 25% agree 25% disagree 12.5% strongly disagree 37.5% disagree 37.5% agree Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 35 12.5% neither disagree or agree 12.5% strongly agree Post-Test 1. I have a good understanding of what stress management is. 2. I understand the benefits of using stress management techniques. 3. I can identify positive vs negative stress management techniques. 4. I can identify five positive stress management techniques. 5. I can identify three situations where healthy stress management techniques would be appropriate. Stress Management Session 2 Outcome Survey Results: Pre-Test 1. I have a good understanding of what stress management is. 2. I understand the benefits of using stress management techniques. 3. I can identify positive vs negative stress management techniques. 4. I can identify five positive stress management techniques. 50% agree 37.5% strongly agree 12.5% neither disagree or agree 50% agree 37.5% strongly agree 12.5% neither disagree or agree 37.5% strongly agree 37.5% neither disagree or agree 25% agree 37.5% agree 37.5% neither disagree or agree 25% strongly agree 100% agree/strongly agree 62.5 % neither disagree or agree 12.5% strongly disagree 12.5% disagree 12.5% strongly agree 37.5% neither disagree or agree 25% disagree 25% strongly agree 12.5% agree 50% neither disagree or agree 25% agree 12.5% disagree 12.5% strongly disagree 37.5% neither disagree or agree 25% disagree 25% strongly disagree 12.5% strongly agree Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION 5. I can identify three situations where healthy stress management techniques would be appropriate. Post-Test 1. I have a good understanding of what stress management is. 2. I understand the benefits of using stress management techniques. 3. I can identify positive vs negative stress management techniques. 4. I can identify five positive stress management techniques. 5. I can identify three situations where healthy stress management techniques would be appropriate. Time Management Session 1 Outcome Survey Results Pre-Test 1. I have a good understanding of what time management is. 2. I understand the benefits of using time management techniques. 3. I can identify two strategies to utilize to improve my time management with daily tasks. 4. I feel confident in my ability to manage my time effectively throughout my daily life. Post-Test 1. I have a good understanding of what time management is. 2. I understand the benefits of using time management techniques. 3. I can identify two strategies to utilize to improve my time management with daily tasks 4. I feel confident in my ability to manage my time effectively throughout my daily life. Kitt 36 37.5% agree 37.5% neither disagree or agree 25% disagree 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree 75% strongly agree 12.5% agree 12.5% neither disagree or agree 75% strongly agree 12.5% agree 12.5% neither disagree or agree 33% neither disagree or agree 33% disagree 17% agree 17% strongly agree 66% neither disagree or agree 17% strongly agree 17% disagree 100% disagree 50% disagree 50% neither disagree or agree 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree 50% agree 33% strongly agree 17% neither disagree or agree Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Time Management Session 2 Outcome Survey Results Pre-Test 1. I have a good understanding of what time management is. 2. I understand the benefits of using time management techniques. 3. I can identify two strategies to utilize to improve my time management with daily tasks. 4. I feel confident in my ability to manage my time effectively throughout my daily life. Post-Test 1. I have a good understanding of what time management is. 2. I understand the benefits of using time management techniques. 3. I can identify two strategies to utilize to improve my time management with daily tasks 4. I feel confident in my ability to manage my time effectively throughout my daily life. Kitt 37 50% strongly agree 33% agree 17% neither disagree or agree 50% agree 33% strongly agree 17% neither disagree or agree 33% strongly agree 17% agree 17% neither disagree or agree 17% disagree 17% strongly disagree 33% disagree 33% strongly agree 17% neither disagree or agree 17% agree 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree Community Resources Session 1 Outcome Survey Results: Pre-Test 1. I have a good understanding of what 43% disagree community resources are available to me 28.5% strongly disagree 28.5% neither disagree or agree 2. I understand the benefits of having knowledge 72% agree of various community resources. 14% strongly agree 14% neither disagree or agree 3. I can identify five different community 43% strongly disagree resources that could be beneficial for me. 43% disagree 14% neither disagree or agree 4. I know where to look to find community 28.5% strongly disagree resources that I could potentially need in the 28.5% neither disagree or agree future. 14% disagree 14% agree 14% strongly agree Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Post-Test 1. I have a good understanding of what community resources are available to me 2. I understand the benefits of having knowledge of various community resources. 3. I can identify five different community resources that could be beneficial for me. 4. I know where to look to find community resources that I could potentially need in the future. Kitt 38 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree Community Resources Session 2 Outcome Survey Results: Pre-Test 1. I have a good understanding of what 33.33% agree community resources are available to me 33.33% neither disagree or agree 33.33% disagree 2. I understand the benefits of having knowledge 33% strongly agree of various community resources. 33% agree 17% neither disagree or agree 17% disagree 3. I can identify five different community 50% neither disagree or agree resources that could be beneficial for me. 33% agree 17% strongly disagree 4. I know where to look to find community 50% agree resources that I could potentially need in the 17% neither disagree or agree future. 17% disagree 17% strongly disagree Post-Test 5. I have a good understanding of what community resources are available to me 6. I understand the benefits of having knowledge of various community resources. 7. I can identify five different community resources that could be beneficial for me. 8. I know where to look to find community resources that I could potentially need in the future. 83% strongly agree 17% neither disagree or agree 100% agree/strongly agree 83% strongly agree 17% neither disagree or agree 100% agree/strongly agree 7 Dimensions of Wellness (Health & Wellness) Session 1 Outcome Survey Results Pre-Test 1. I have a good understanding of what the 7 50% disagree dimensions of wellness are. 33% strongly disagree 17% neither disagree or agree Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION 2. I understand the benefits of knowing what the 7 dimensions of wellness are and applying it to my life. 3. I feel confident in improving my satisfaction in the 7 dimensions of wellness. 4. I can identify three techniques to utilize to improve in areas throughout my 7 dimensions of wellness. Post-Test 1. I have a good understanding of what the 7 dimensions of wellness are. 2. I understand the benefits of knowing what the 7 dimensions of wellness are and applying it to my life. 3. I feel confident in improving my satisfaction in the 7 dimensions of wellness. 4. I can identify three techniques to utilize to improve in areas throughout my 7 dimensions of wellness. Kitt 39 50% strongly disagree 33% disagree 17% neither disagree or agree 66% disagree 17% agree 17% strongly agree 50% strongly disagree 50% disagree 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree 100% agree/strongly agree 7 Dimensions of Wellness (Health & Wellness) Session 2 Outcome Survey Results Pre-Test 5. I have a good understanding of what the 7 50% strongly disagree dimensions of wellness are. 17% neither disagree or agree 17% agree 17% strongly agree 6. I understand the benefits of knowing what the 7 50% neither disagree or agree dimensions of wellness are and applying it to my 17% disagree life. 17% strongly disagree 17% strongly agree 7. I feel confident in improving my satisfaction in the 50% neither disagree or agree 7 dimensions of wellness. 50% strongly agree 8. I can identify three techniques to utilize to 50% strongly disagree improve in areas throughout my 7 dimensions of 33% neither disagree or agree wellness. 17% strongly agree Post-Test 5. I have a good understanding of what the 7 dimensions of wellness are. 6. I understand the benefits of knowing what the 7 dimensions of wellness are and applying it to my life. 7. I feel confident in improving my satisfaction in the 7 dimensions of wellness. 8. I can identify three techniques to utilize to improve in areas throughout my 7 dimensions of wellness. 100% strongly agree 100% agree/strongly agree 100% agree/strongly agree 100% strongly agree Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 40 Appendix E GOAL ATTAINMENT SCALE FORM Level Of Attainment Goal 1: Goal 2: -2 Much less than expected (Present Level) Needs full assistance with updating resource binder. Needs full assistance to provide group programming sessions with the clients. -1 Somewhat less than expected (Progress) 0 Expected level of outcome (Annual Goal) +1 Somewhat more than expected (Exceeds annual goal) +2 Much more than expected (Far exceeds annual goal) Update the sites resource binder Needs some assistance to provide with some assistance, some accurate group programming sessions with information. the clients. Independently update the sites resource binder with correct information to make the discharge/placement process easier and more successful. Independently update the sites resource binder with correct information to make the discharge/placement process easier and more successful. Make various new connections with recovery homes/go and visit these facilities. Independently update the sites resource binder with correct information to make the discharge/placement process easier and more successful. Make various new connections with recovery homes/go and visit these facilities. Update information on clinical services, adjunct services, veteran resources. Organize overall binder. Independently plans and implements various group programming sessions with the clients. Independently plans and implements various group programming sessions with the clients. Provides several different group sessions on various topics that are beneficial for the clients to learn. Independently plans and implements various group programming sessions with the clients. Provides several different group sessions on various topics that are beneficial for the clients to learn. Provides several handouts for the clients to utilize on their own. Results: Both resource coordinators that completed the GAS scored the student with +2 Much more than expected for both goals. Below are attached copies of the completed GAS. Running head: IMPACTS OF OCCUPATIONAL DEPRIVATION Kitt 41  ...

... Running head: EXPLORING THE IMPACT OF RACING4VETS 1 Exploring the Impact of Racing4Vets on Well-Being, Quality of Life, Posttraumatic Growth, and Occupational Performance Barbara Kimmel May, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Beth Ann Walker, PhD, OTR EXPLORING THE IMPACT OF RACING4VETS 2 A Capstone Project Entitled Exploring the Impact of Racing4Vets on Well-Being, Quality of Life, Posttraumatic Growth, and Occupational Performance 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 Barbara Kimmel 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 EXPLORING THE IMPACT OF RACING4VETS 3 Abstract Many veterans have difficulty with reintegration into civilian life due to factors including psychological health, social interaction, physical health, housing, finances, education, and/or legal matters (Elnitsky, Fisher, & Blevins, 2017). There is a need for services to enhance posttraumatic growth and quality of life for these veterans. The primary mission of the Racing4Vets organization is to help veterans with disabilities get involved in motorsports careers and amateur competitive racing. However, Racing4Vets efforts to promote community, healing, and career have not been analyzed for its impact on the veterans served. The purpose of this doctoral capstone experience was to perform a program evaluation of Racing4Vets and to explore the programs influence on veteran well-being, quality of life, posttraumatic growth, and occupational performance. Participants completed an online survey measuring perceived competence, challenges with reintegration, and program influence on health, well-being, social support networks, and occupational performance. Semi-structured interviews were conducted to explore the lived experience and explore program influence on occupational performance. Participants reported slight to moderate perceived competence in mechanical skills, healing, health, community, and racing; little to some difficulty with their transition to civilian life; and small to moderate posttraumatic growth. The following themes emerged from the semistructured interviews: reintegration, program involvement, supportive environment, life change, and learning. Overall, Racing4Vets facilitated social interaction, social support development, participation in meaningful occupations, and mental health. EXPLORING THE IMPACT OF RACING4VETS Acknowledgements This doctoral capstone experience would not have been possible without the willingness of the Racing4Vets organization and team members to accept and include me. I am particularly grateful for the openness of Rex Johnson, Rainer Pansch, Adam Webb, Kevin Kleier, Donald Hetzler, Geoffrey Bramer, and Alex Hoblik as well as the support and workspace provided by Aaron and Kerin Banfield and Full Throttle Indoor Karting in Springdale, Ohio. The guidance and advice of Dr. Beth Ann Walker, my mentor from the University of Indianapolis, has been an integral part of the professionalism and quality of this experience. Finally, I would like to offer a special thanks to my family and friends for the assistance moving as well as the phone calls, texts, and visits throughout the duration of this experience. 4 EXPLORING THE IMPACT OF RACING4VETS 5 Exploring the Impact of Racing4Vets on Well-Being, Quality of Life, Posttraumatic Growth, and Occupational Performance According to the Veteran Population Projection Model 2016, there will be an estimated 19,210,000 United States veterans in September 2019 (Department of Veterans Affairs, 2016). Unfortunately, the transition back to civilian life, known as reintegration, is often difficult for veterans as they cope with assimilating their military identity with the identity they had in civilian life (Koenig, Maguen, Monroy, Mayott, & Seal, 2014). During deployment, military personnel experience things that only other military personnel have experienced and military culture supports individuals through these traumatic situations through structure and a sense of connection that many consider a family (Ahern et al, 2015, p. 4). Following deployment, veterans may perceive a disconnect between military life and civilian life, perceive a lack of support from military institutions, struggle with a lack of structure, and experience a loss of meaning or purpose (Ahern et al., 2015). This may cause social, personal, emotional/cognitive, physical, and spiritual changes that leave many veterans searching for a new normal (Ahern et al., 2015, pp.7; Painter, Gray, McGinn, Mostoufi, & Hoerster, 2016). According to Elnitsky, Fisher, and Blevins (2017), there are ten domains of reintegration including psychological health, family, social interaction, physical health, housing, finances, education, legal matters, spiritual matters, and non-specific. Many veterans struggle with mental health issues that influence reintegration. Of the 238,098 veterans from Operation Enduring Freedom (OEF) and Operation Iraqi Freedom (OIF) served by the Veterans Association (VA) between 2002 and 2008, 35.7% were diagnosed with at least one new mental health condition post-deployment and the majority of veterans were diagnosed with two or more (Seal et al., 2010). Post traumatic stress disorder (PTSD) was the most common diagnosis (58.2%), followed EXPLORING THE IMPACT OF RACING4VETS 6 by depression (42.3%) and adjustment disorder (34.1%) (Seal et al., 2010). In a retrospective study, 11% of the 456,502 OEF/OIF veterans who first utilized the VA between 2001 and 2010 were diagnosed with at least one substance use disorder including alcohol abuse or dependence and drug abuse or dependence (Seal et al., 2011). Of the veterans in this study diagnosed with a substance use disorder, 8293% had co-occurring mental health diagnoses with PTSD being the most common (Seal et al., 2011). One veteran noted: It seemed like I had to drink to get a decent nights sleep. For one, having been on a completely different time schedule, youre used to certain sleep schedules then theres the emotional problems from being overseas Not being able to sleep for several hours, just lying there and thinking about it. (Plach & Sells, 2013) PTSD symptoms have been strongly correlated with drinking to cope and perceived stigma of seeking assistance, suggesting that veterans with more severe PTSD may be more likely to have substance use disorders and are unlikely to seek assistance for either the PTSD or the substance use (Miller, Pedersen, & Marshall, 2017). Many veterans struggle with this type of stigma, which can further complicate the reintegration process. At the end of deployment, all service men and women complete the PostDeployment Health Assessment; during the routine assessment of 3,502 United States Army soldiers from the infantry brigade combat teams in 2008, 4% of soldiers screened positive for PTSD or depression (Warner et al., 2011). However, an additional anonymous survey, completed by the same soldiers during their routine assessment, indicated 12% of soldiers screened positive for PTSD or depression and 20% of these soldiers reported being uncomfortable answering honestly on the routine post-deployment screening (Warner et al., 2011, pp.1068). Pride associated with self-reliance and image may serve as a barrier to seeking EXPLORING THE IMPACT OF RACING4VETS 7 needed mental health services (Vogt, 2011). In a survey of Iraq and Afghanistan veterans, 37% endorsed one or more stigma-related barriers to mental health treatment, such as It would harm my career, Members of my unit might have less confidence in me, My unit leadership might treat me differently, and I would be seen as weak (Hoerster et al., 2012, p. 381). According to Kulesza, Pedersen, Corrigan, and Marshall (2015), veterans in their study with a mental health diagnosis who also identified high perceived public stigma were significantly less likely to receive mental health services. A study of stigma perceived by caregivers of veterans with TBI indicated that 50% of the caregivers perceived stigma against the veteran, including being treated with less courtesy or respect than other people, others acting as if they are better than the individual, receiving poorer service than other people, and others acting as if they are afraid of the individual (Phelan et al., 2018). This perceived stigma was significantly associated with poorer community reintegration of the veteran (Phelan et al., 2018). Many veterans also struggle with the social and familial aspects of reintegration due to the conflicting nature of military versus civilian culture, a lack of understanding from civilians of military experiences and resulting effects, and a disconnect with family and friends (Ahern et al., 2015). In a study of young OEF/OIF veterans, 77% reported social interaction and relationships as one of their top five reintegration difficulties within the first year back in civilian life (Plach & Sells, 2013). Some veterans suggest that the much needed social support of family is key to their successful reintegration (Tomar & Stoffel, 2014; Kukla, Rattray, & Salyers, 2015) However, many veterans have difficulty connecting with civilians including family members and medical personnel, because the civilians cannot grasp some of the concepts of military culture that have shaped the identity of the veteran (Libin et al., 2017). One veteran noted that some individuals like to keep their service experiences a secret or like to reveal certain aspects at certain times EXPLORING THE IMPACT OF RACING4VETS 8 (Tomar & Stoffel, 2014); this may further complicate the gap felt with civilians. Others noted that civilians just do not understand and that it is not possible to describe what you experienced or are feeling (Plach & Sells, 2013). A few veterans noted that they feel more comfortable and feel more like they belong when talking with other veterans once back in civilian life (Tomar & Stoffel, 2014). Another veteran noted a longing for the militarys sense of camaraderie, community, and support that was not experienced in the transition back to civilian culture (Tomar & Stoffel, 2014). Mental health concerns that many veterans experience, such as depression, may make it more difficult for some veterans to get along with others (Plach & Sells, 2013). One veteran noted that everyone expects you to be full of complete joy to be home, but that there are times when all you want to do is go back to deployment (Tomar & Stoffel, 2014). The thoughts and feelings related to social interaction described above can further complicate the difficulties of reintegration post service. Some veterans return with physical health problems including musculoskeletal injuries, amputations, spinal cord injuries, or traumatic brain injuries (TBI) that impact the roles that they can fulfill upon returning to civilian life (Taylor et al., 2012; Myaskovsky et al., 2017; Foote et al., 2015; Lew et al., 2009). In a study of combat-related wounds registered through the Joint Theater Trauma Registry during OIF and OEF from 2001 through 2005, 1,566 service men and women sustained 6,609 wounds with 54.1% of the wounds in the extremities, 29.4% in the head and neck region, 10.7% in the abdominal region, and 5.6% in the thoracic region (Owens et al., 2008). Approximately 61% of OEF, OIF, and Operation New Dawn (OND) veterans in 2015 were utilizing VA services for musculoskeletal or connective tissue conditions (Veterans Health Administration, 2015a). Musculoskeletal injuries can lead to chronic pain, with the most common being head and back pain, followed by shoulder, neck, and knee pain (Johnson et al., EXPLORING THE IMPACT OF RACING4VETS 9 2013; Lew et al., 2009). Chronic pain may attribute to other difficulties such as functional disability, psychological distress, family discord and vocational issues (Lew et al., 2009). A study of the Department of Defense Trauma Registry from 2005 to 2009 indicated that SCIs were more likely to occur in OEF/OIF than in previous wars with a prevalence of 4.0 out of 100,000 injuries (Schoenfeld et al., 2013). Veterans who have SCIs with greater physical impairment have lower occupational functioning, or ability to perform their roles independently (Myaskovsky et al., 2017). These veterans, with greater impairment, are more likely to have mental health disorders, and those with mental health disorders are likely to have less satisfaction in life (McDonald et al., 2017). The physical and psychological impact of a SCI discussed above would likely complicate the difficult process of reintegration from military service. Between 2001 and 2015, 1,645 service men and women underwent major limb amputations as the result of service-related wounds or injuries in Operation Freedoms Sentinel (OFS), Operation Inherent Resolve (OIR), Operation New Dawn (OND), OIF, and OEF (Fischer, 2015). Most veterans with amputations reported overall good quality of life related to protective factors such as good jobs, meaningful long-term intimate relationships, having children/grandchildren, financial security, having hobbies, and engaging in community activities; however, they also expressed many frustrations related to their physical limitations (Foote et al., 2015). The physical and psychological symptoms of limb loss can cause significant disability through difficulty with everyday activities such as mobility, grooming and hygiene, employment, social participation, community activities, and physical activity or sport involvement (Foote et al., 2015; Armstrong et al., 2018; Johnson et al., 2013; Christensen, Ipsen, Doherty, & Langberg, 2016). Some of the main symptoms and comorbidities veterans who have amputations experience include arthritis, pain, cardiovascular disease, obesity, depression, and PTSD (Foote EXPLORING THE IMPACT OF RACING4VETS 10 et al., 2015). Arthritis and pain may be attributed to overuse injuries from compensation for the amputated limb (Farrokhi, Mazzone, Eskridge, Shannon, & Hill, 2018; Foote et al., 2015; Resnik, Ekerholm, Borgia, & Clark, 2019). One author reported the overall incidence of a musculoskeletal overuse injury as between 59% and 68% within the first year after lower limb amputation with the majority of injuries being in an upper extremity or the lumbar spine (Farrokhi et al., 2018). Whereas, the majority of veterans with upper limb amputations reported pain in the intact upper extremity and neck (Resnik et al., 2019). Pain in the residual limb may also occur and limit prosthetic use; this may further decrease the mobility or employment of veterans who have amputations (Armstrong et al., 2018; Foote et al., 2015; Hebert & Burger, 2016). Another major pain issue for veterans with upper or lower limb amputations is phantom limb pain (Resnik et al., 2019; Foote et al., 2015; Christensen et al., 2016). One veteran who had an amputations explained that pain related to the amputation could trigger his PTSD and that the PTSD symptoms resulted in decreased social participation and limited the number of close friends (Foote et al., 2015). Body image issues as well as depression may also create social and employment barriers for veterans who have amputations (Johnson et al., 2013, Foote et al., 2015; Hebert & Burger, 2016). Veterans who had upper extremity amputations self-reported a moderate level of physical impairment (Resnik et al., 2019). Physical impairment of amputations increases the difficulty for veterans to participate in physical activity and sport, which may increase the risk of cardiovascular disease and obesity commonly reported in this population (Christensen et al., 2016; Foote et al., 2015). The various symptoms and comorbidities related to amputations can further complicate aspects of reintegration into civilian life. EXPLORING THE IMPACT OF RACING4VETS 11 In a study of 327,388 OEF and OIF veterans who used VA services in 2009, 6.7% received a diagnosis of TBI (Taylor et al., 2012). Veterans who sustain a mild TBI may have more difficulty with reintegration due to health, cognitive, and psychosocial factors (Libin et al., 2017). TBI can be further complicated by other disorders; approximately half of the 6.7% of OEF/OIF veterans in the study mentioned above, also had PTSD and complaints of musculoskeletal pain that can further limit individuals participation (Taylor et al., 2012). Some veterans have a different struggle related to physical health; for some veterans, it may be difficult to stay in good physical shape due to a lack of routine or structure in relation to nutrition and physical activity upon their transition back to civilian life (Plach & Sells, 2013). Finances and homelessness are other aspects of reintegration that can be difficult for some veterans. In 2015, an estimated 47,725 veterans were homeless; this accounted for approximately 8% of the overall homeless population (United States Department of Housing and Urban Development, 2015). Substance abuse, mental health conditions, and low income are the strongest risk factors for homelessness, followed by lack of social support, lack of employment, and misuse of money (Edens, Kasprow, Tsai, & Rosenheck, 2011; Tsai & Rosencheck, 2015; Twamley et al., 2019). Veterans may also have difficulty with housing due to combat-related conditions (Lowe & Dybicz, 2019). Some veterans may not be able to work due to their disability (Kukla et al., 2015). Many of these veterans receive VA disability compensation, which is considered a protective factor against homelessness (Edens et al., 2011); however, some veterans may have difficulty completing the appropriate documentation or navigating VA care and compensation processes (Albright et al., 2018). Veterans with mental health conditions, who may not receive any or enough VA compensation, may have difficulty participating in work or sustaining a job (Plach & Sells, 2013). Some veterans cannot sustain a job long-term due to EXPLORING THE IMPACT OF RACING4VETS 12 missing days, substance use, or conflict with coworkers or bosses (Stacy, Stefanovics, & Rosenheck, 2017; Kukla et al., 2015). One veteran who sustained a mild TBI noted how difficult it was to maintain a job due to the memory difficulties associated with the TBI; this veteran was very irritated with the reaction from co-workers when asking for help in relation to memory because they would get frustrated that the veteran could not remember (Libin et al., 2017). This veteran stated, "They expect us to be a normal person, but in actuality we cant" (Libin et al., 2017). Even veterans without confounding physical or psychological conditions may have difficulty finding work due to a lack of transferability of military skills to the civilian workforce (Lowe & Dybicz, 2019). One veteran reported: Every job Ive applied for they say I dont have enough experience, even though I had the same experience in the military. They dont consider that experience because it wasnt in the civilian sector so its like Im starting all over again from high school. I was a mechanic. I was also a squad leader which gives me management skillsand thats not even counted either. (Kukla et al., 2015, p. 485) Another veteran noted, [I]t seemed like my only place was in the blue collar fieldmost jobs were temporaries.So I honestly believe during this time it was a factor of just me having a high school diploma wasnt good enough and me serving for my country didnt help any (Kukla et al., 2015, p. 483). This lack of transferability of skills may result in veterans working low income jobs, resulting in financial difficulties and increased risk of homelessness (Tsai & Rosencheck, 2015). Some veterans in the transition to civilian life seek new career paths by going to college, however, there are for veterans in this role as well (Kukla et al., 2015). In a study of 30 veterans who returned to college, 70% identified challenges with this transition (Plach & Sells, 2013). EXPLORING THE IMPACT OF RACING4VETS 13 Some veteran who transition into the student role have difficulty with general skills required for an academic setting such as concentration and relearning skills (Plach & Sells, 2013). The hypervigilance that was key to survival in the military may lead veterans in the student role to be too aware of their surroundings and limit the ability to focus on school work or lectures (Tomar & Stoffel, 2014). A few veterans noted that veterans do not want to seem needy and are not likely to ask for help; however, they need some help, which can be difficult for university personnel (Tomar & Stoffel, 2014). Veterans in the student role may feel isolated or like they do not belong due to difficulty interacting or connecting with classmates, professors, and other university personnel (Plach & Sells, 2013; Tomar & Stoffel, 2014). The difference in the culture of higher education and the military may make it difficult for veterans to interact or connect with classmates, leading to this sense of isolation and a lack of belonging (Gregg, Shordike, Howell, Kitzman, & Iwama, 2017; Plach & Sells, 2013; Tomar & Stoffel, 2014). One veteran noted that classmates were extremely stressed and frantic about upcoming finals, but for the veteran, finals were much less stressful than his experiences in the military (Tomar & Stoffel, 2014). Another potential difficult for student veteran is that some may have more advanced experience in the area that they are studying, whereas, their classmates are learning these skills for the first time (Plach & Sells, 2013). Legal matters may further complicate the reintegration of some veterans. Legal matters affecting some veterans may include arrests, warrants, restraining orders, disciplinary actions, probation or parole, or driving under the influence of a substance (Larson & Norman, 2014). According to the Bureau of Justice Statistics, veterans comprized 8% of all state and federal inmates between 2011 and 2012 (Bronson, Carson, Noonan, & Berzofsky, 2015). Approximately 64% of veterans were incarcerated for violent offences, 20% for property EXPLORING THE IMPACT OF RACING4VETS 14 offences, and 18% for drug offences (Bronson et al., 2015). Approximately 50% of veterans who were incarcerated had been told they have a mental health condition (Bronson et al., 2015). Mental health conditions, such as PTSD, may cause symptoms of anger or irritability which results in a higher risk for arrest (Elbogen et al., 2012). Elements of Battlemind that suggest poor adaptation to civilian life, such as control, aggression, hypervigilance, need to be armed, anger, aggressive driving, and conflict, may also contribute to an increased risk of arrest (Walter Reed Army Institute of Research, 2005). Examples of one veterans experience with these elements include physical aggression toward spouse, pulling a gun inappropriately in low stress situations, driving erratically as if attempting to avoid improvised explosive devices (IEDs), and eventually homicide (Sreenivasan et al., 2013). Veterans who have been incarcerated may further struggle with reintegration to civilian life due to possible personal, social, and economic tolls from incarceration including outstanding debts, such as child support, taxes, and fines; homelessness; need for mental health or substance use treatment; unemployment due to legal restrictions, employer stigma, and lack of job skills; lack of social skills; lack of family or community support; and recidivism, or increased risk to reoffend (McDonough, Blodgett, Midboe, Blonigen, 2015). Many veterans return to civilian life and feel a loss of purpose or meaning in life (Ahern et al., 2015). Several veterans in one study expressed feelings of worthlessness during their transition because they felt that they were contributing to something meaningful through their military service (Kukla et al., 2015). Others noted a lack of purpose or meaning in civilian life due to the loss of working toward a common societal goal, which was intensified when veterans could not find work that was applicable to their skills or experiences in the military (Ahern et al., 2015). One veteran noted, The submarine training takes so much of your life that turning it off EXPLORING THE IMPACT OF RACING4VETS 15 when you do not need it almost seems like giving up a part of yourself. As I move on in my civilian life I feel a loss and also emptiness without it (Tomar & Stoffel, 2014, p. 434). For many service men and women, their military service and military culture become a part of their identity and this part of their identity is lost during the transition to civilian life, leading to further difficulty with reintegration (Kukla et al., 2015). Nearly all of the factors of reintegration discussed above, if negative, may contribute to veteran suicide. Authors of one study indicated that the struggles of service men and women during the transition to civilian life, including chronic pain, emotional reactivity or distancing, change in physical functioning, combat guilt, discomfort in seeking care, and difficulty reintegrating into family and society, were similar to the potential attributes to suicide based on the interpersonalpsychological theory of suicide (Lusk et al., 2015). Mental health conditions such as depression, anxiety, PTSD, and substance use disorders are the most common risk factors for suicide (Magruder, Yeager, & Brawman-Mintze, 2012). However, one study indicated that the stress of reintegration including difficulty with maintaining military friendships, getting along with relatives, feelings of belonging in civilian society, and finding meaning/purpose in life increased suicidal ideations even when controlling for psychiatric conditions and substance misuse (Haller, Angkaw, Hendricks, & Norman, 2015). Suicide rates among veterans have decreased from 22 per day in 2012 to 20 per day in 2014, however, suicide remains a major concern for service men and women integrating into civilian life (United States Department of Veterans Affairs, 2016). For those who struggle with transition, there is a need for services that serve to enhance posttraumatic growth and enhance quality of life. Posttraumatic growth is the concept of positive personal growth in at least one area following a significant traumatic event that disrupts the basic EXPLORING THE IMPACT OF RACING4VETS 16 beliefs or schemas held by an individual (Tedeschi & Calhoun, 2004). Authors report that individuals who survive traumatic events tend to value their experience without intentionally seeking meaning or growth from the trauma, rather "posttraumatic growth is most likely a consequence of attempts at psychological survival, and it can coexist with the residual distress of the trauma" (Tedeschi & Calhoun, 2004, pp.5). Individuals experiencing posttraumatic growth as compared to individuals with normal developmental growth have increased numerical growth as well as a different meaning behind their growth, including extensive cognitive processing and affective engagement that contributed to their learning and adaptation (Tedeschi & Calhoun, 2004). Areas of possible growth include an increased appreciation for life, more meaningful interpersonal relationships, an increased sense of personal strength, changed priorities, and richer spiritual life (Tedeschi & Calhoun, 2004). Occupational therapy is the practice of helping individuals, groups, or populations successfully participate in occupations. An occupation is anything that fills ones time including the activities that one wants, needs, and is expected to do. Within the Occupational Therapy Practice Framework (OTPF), occupations are categorized into activities of daily living (ADLs), instrumental activities of daily living (IADLs), rest and sleep, education, work, play, leisure, and social participation (American Occupational Therapy Association, 2017). ADLs are focused on the basic needs of an individual related to self-care including: bathing, toileting, dressing, swallowing/eating, feeding, functional mobility, personal device care, personal hygiene and grooming, and sexual activity (AOTA, 2017). IADLs are supplementary daily activities that allow an individual to participate within the home and community; IADLs include care of others, care of pets, child rearing, communication management, driving and community mobility, financial management, health management and maintenance, home establishment and EXPLORING THE IMPACT OF RACING4VETS 17 management, meal preparation and clean up, religious and spiritual activities and expression, safety and emergency maintenance, and shopping (AOTA, 2017). Occupational therapists assist clients in fulfilling these occupations through evaluation of client factors, performance skills, performance patterns, and contexts and environments (AOTA, 2017). Client factors are aspects of the client that affect occupational performance including ones abilities, characteristics, and beliefs (AOTA, 2017, p. S7). Client factors are categorized into values, beliefs, and spirituality; body structures; and body functions (AOTA, 2017). Body structures are all the physical structures or anatomy of ones body (AOTA, 2017). Body functions are how the body structures work and encompass aspects of physical and mental capabilities such as thought, attention, memory, emotion, movement of bones and muscles, senses, function of organs, and production of voice and speech (AOTA, 2017). Performance skills are an integration of the body structures and body functions that create ones ability to perform a certain physical, mental, or social skill or action such as lifting an object, attending to a task, or expressing emotions (AOTA, 2017). Performance patterns refer to ones habits, routines, rituals, and roles (AOTA, 2017). Contexts include the cultural, personal, temporal, and virtual conditions within or around the client (AOTA, 2017, p. S28). Environments include the physical and social surroundings of the client (AOTA, 2017). All of these aspects are important factors to determine ones occupational performance. Occupational therapists utilize occupation-based theories and models, integrated with the OTPF concepts, to structure evaluation and treatment. The Canadian Model of Occupational Performance (CMOP) is one example of these theories. According to the CMOP, occupational dysfunction occurs as the result of a change in any of the factors of the person, environment, or occupation due to the interconnectedness of these three aspects (Cole & Tufano, 2008; EXPLORING THE IMPACT OF RACING4VETS 18 Ramafikeng, 2010). The person factor consists of the human spirit at the core along with physical, cognitive, and affective aspects (Cole & Tufano, 2008). The human spirit is defined as the essence of ones identity and can be composed of an individuals motivation, well-being, and life meaning and satisfaction (Cole & Tufano, 2008; Ramafikeng, 2010). The person aspect of the CMOP includes the client factors, performance skills, and performance patterns described in the OTPF explained above. The CMOP delineates occupation into three categories including self-care, productivity, and leisure (Cole & Tufano, 2008). This is another way of categorizing occupations. In this model, self-care would include activities such as bathing, grooming, and dressing, which would be considered ADLs. Productivity includes activities such as jobs, careers, or volunteer work; this would include many IADLs in addition to work and education from the OTPF. Leisure includes any activity that someone chooses to do for pleasure. Environment within this model, including physical, social, cultural, and institutional aspects, is where individuals are presented with occupational opportunities (Cole & Tufano, 2008; Ramafikeng, 2010). Occupational therapists can utilize the concepts within the CMOP, along with the OTPF, to assess an individuals occupational performance based on the interaction of the various aspects of the person, environment, and occupation. Within occupational therapy literature and documentation, the CMOP has been utilized as a framework to organize individual aspects of the person, environment, and occupation (Hurst, 2017); the CMOP will be utilized in this way for the current project. Another form of assessment based on the CMOP is the Canadian Occupational Performance Measure (COPM) (Law et al., 1990). This measure is a semi-structured interview that requires the client to identify areas of difficulties in performance within each of the occupational categories (self-care, productivity, and leisure) and then rated each area in importance on a scale of one to ten (Law et EXPLORING THE IMPACT OF RACING4VETS 19 al., 1990). The five areas with the highest importance to the client are then rated on perceived current performance and satisfaction with that performance on the one to ten scale. The performance and satisfaction scores are then multiplied by the importance score for each of the five identified areas to determine baseline scores between 1 and 100. The process is then repeated after the client has undergone several treatment sessions to determine progress made on each of the client-identified aspects (Law et al., 1990). The COPM has been utilized with various populations in various practice settings including TBI, PTSD, stroke, chronic pain, diabetes, mental health, hand therapy, and pediatrics within primary care, outpatient, residential program, and inpatient rehabilitation (Donnelly, ONeill, Bauer, & Letts, 2017; Doig, Fleming, Kuipers, & Cornwell, 2010; Speicher, Walter, & Chard, 2014; Hansen et al., 2016; Persson, Eklund, Lexell, & Rivano-Fischer, 2013; Marinho et al, 2016; Rouleau, Dion, Korner-Bitensky, 2015; Robinson, Brown, & OBrien, 2016; Reidy, Naber, & Stashinko, 2018). Within all settings, the COPM is utilized to provide treatment plans that are collaborative, client-centered, measurable, and occupation-based (Law et al., 1990; Plach & Sells, 2013; Donnelly et al., 2017; Doig et al., 2010). Within the primary care and hand therapy settings, the COPM helps guide occupational therapy evaluation by keeping the assessment occupation and function focused rather than simply measuring medical symptoms (Donnelly et al., 2017; Robinson et al., 2016). Within the TBI population, the most significant use of the COPM was to ensure the evaluation was client-centered and also allowed for clients to report subjective changes which was a way to evaluate their insight (Doig et al., 2010). Clients within the stroke population appreciated the COPM as a tool to direct evaluation and treatment as they had greater perceptions that the goals that were most important to them were the goals that were being addressed (Hansen et al., 2016). EXPLORING THE IMPACT OF RACING4VETS 20 According to the Meaningful Activity and Life Meaning model (MALM), engagement in meaningful activity is directly and indirectly associated with meaning in life (Eakman, 2013). Within the model, meaningful activity may influence meaning in life through the fulfillment of basic psychological needs including autonomy, competence, and relatedness (Eakman, 2013). However, there is also a direct path between meaningful activity and meaning in life within this model that is significant, indicating that participation in meaningful activities may have an effect on meaning in life apart from fulfillment of basic psychological needs (Eakman, 2013). A longitudinal study utilizing the MALM model supported the idea of the direct and indirect pathway between meaningful activity and meaning in life within an 11 month period (Eakman, 2014). This research further supports the use of meaningful activities to enhance well-being and quality of life (Eakman, 2014). The roots of the occupational therapy profession come from reconstruction aides in World War I (Gutman, 1995). The reconstruction aides, who became known as occupational therapists, strived to increase the morale of the soldiers who were injured through participation in productive activities which fostered a sense of accomplishment and achievement (Ford, 1921; Pettigrew, Robinson, & Moloney, 2016). As the profession grew, occupational therapy continued to work with service men and women as well as veterans, however, the focus has shifted from distraction from illness and injury to goal-directed treatments to enable individuals to perform their occupations (Veterans Health Administration, 2015b). The VA is now the single largest employer of occupational therapists (Veterans Health Administration, 2018). At the VA, occupational therapists work with multiple disabilities, disorders, and conditions including amputation, TBI, PTSD, spinal cord injury, stroke, neurological disorders, vision loss, and homelessness (VHA, 2018). Occupational therapists facilitate veterans abilities to continue EXPLORING THE IMPACT OF RACING4VETS 21 or re-learn how to complete the activities they need and want to do (Duddy, 2015). Occupational therapists help veterans with physical components of these activities through pain management, work hardening, ergonomics, seating and mobility, home modifications, and assistive devices and technology (VHA, 2015b; VHA, 2018; AOTA, 2015). Occupational therapists assist veterans with cognitive and mental health impairments through coping strategies, trigger identification, problem solving and memory strategies, stress management, psycho-education, crisis intervention, and development of healthy habits and routines (VHA, 2015b; AOTA, 2015). Occupational therapists also address the functional needs of veterans such as self care tasks, social skills, role development, and community reintegration (VHA, 2015b). Thus far, occupational therapy has been effectively addressing the needs of veterans through interventions focused on increased identity and well-being, physical and psychological symptom management, community reintegration support, and increasing participation and performance in occupations (Walker, Bramstedt, Cleary, Greer, & Teague, 2018; Walker et al., n.d.). The top six resources veterans seek for assistance with reintegration difficulties are recreational opportunities, access to health benefits, opportunities to connect with other military members and families, access to employment, physical health treatment, and volunteer opportunities (Americas Warrior Partnership, 2017). Research on various sports programs indicates physical activity and sport effectively decreases PTSD and depression symptoms in veterans (Caddick & Smith, 2014; Bennett, Lundberg, Zabriskie, & Eggett, 2014; Ley, Rato Barrio, Koch, 2018; Lundburg, Bennet, & Smith, 2011; Rogers, Mallinson, Peppers, 2014; Rosenbaum et al., 2015). Physical activity and sport has motivational and restorative effects on veterans, leading to increased overall well-being and meaning in life (Ley et al., 2018). Specifically, physical activity and sport increases psychological well-being through growth and EXPLORING THE IMPACT OF RACING4VETS 22 development of determination, inner strength, identity/self-concept, social well-being, and achievement/accomplishment (Caddick & Smith, 2014). Due to the psychological benefits, authors suggest that sports activities are great adjunct interventions for individuals with mental illness such as PTSD and depression (Caddick & Smith, 2014). Another program for veterans offered coffee socials in various towns and cities in order to create a sense of community among veterans and to better connect the veterans with the civilian community (Gorman, Scoglio, Smolinsky, Russo, & Drebing, 2018). The groups created a realistic way for veterans to gain emotional support and provided some veterans the opportunity to mentor some of the other veterans in a way that was rewarding to all (Gorman et al., 2018). The groups also assisted veterans struggling with social isolation and substance abuse to find an enjoyable, drug-free social activities to aid in recovery and reintegration (Gorman et al., 2018). Authors reported that other informal social support interventions... could prove useful as a supplementary intervention to other mental health services or as a gateway to other services (Gorman et al., 2018, pp.1195). Researchers determined that open wheel racecar drivers expend slightly less energy than basketball and soccer players when measuring physical activity ratio, or mets (Beaune, Durand, & Mariot, 2010, pp.2927). The physicality of kart racing is also noted by a writer in Popular Mechanics magazine in his statement, The hardest part of driving a kart well, however, is not mental, but physical. At first, your forearms and shoulders won't make it more than a few laps before they're surging with blood and drained of all their strength. And your lungs will feel like you just ran a marathon" (Oldham, 1996, pp.40). Even National Association of Stock Car Auto Racing (NASCAR) driver, Kevin Harvick, reported utilizing go-kart racing to keep him in shape during the offseason (2011). EXPLORING THE IMPACT OF RACING4VETS 23 Racing4Vets is a non-profit organization that utilizes the power of the racing community to get veterans who have service-related disabilities involved in motorsports careers and amateur racing (Racing4Vets, n.d.). The mission of Racing4Vets is to give back to the men and women who have sacrificed and protected us as members of the U.S. Armed Forces, National Guard, Reserves, and Coast Guard (Racing4Vets, n.d.). The two main goals of the organization are to create a motorsports career training and outreach program and to provide veterans who have injuries with the opportunity to compete in amateur racing (Racing4Vets, n.d.). The organization aims to accomplish these goals through the development of skills, knowledge, and job connections and by obtaining safety equipment, vehicles, sponsorship, adapted controls, mechanical support and relationships with local organizers and racers (Racing4Vets, n.d). The amateur racing component of the organization is designed to give participants a safe opportunity to engage in exercise, healthy competition, camaraderie, and stimulating activities, while facilitating pride and self-belief in the participants and advocating for support from the community (Racing4Vets, n.d.). The Racing4Vets organization consists of two chapters. The Cincinnati chapter in Cincinnati, Ohio hosts indoor and outdoor karting opportunities (Racing4Vets, n.d.). The Cincinnati chapter is partnered with the Cincinnati Veterans Administration Post Traumatic Stress Disorder and Traumatic Brain Injury Rehabilitation Program at Fort Thomas, Kentucky and Full Throttle Indoor Karting in Springdale, Ohio and Florence, Kentucky for veterans receiving rehabilitation to experience the benefits of karting and community on a monthly basis (Racing4Vets, n.d.). The monthly indoor karting opportunities are also attended by veterans receiving services at the Fort Thomas Veterans Association Domiciliary and Joseph House (Racing4Vets, n.d). The Racing4Vets outdoor karting team offers veterans a team environment EXPLORING THE IMPACT OF RACING4VETS 24 to work together to gain sponsorships and build the team karts to compete during the outdoor racing season with the Ohio Valley Karting Association or the World Karting Association (Racing4Vets, n.d.). The Tampa chapter in Tampa, Florida hosts an all-service-disabled veteran automotive motorsports education program (Racing4Vets, n.d.). This program offers veterans a hands-on team environment to learn mechanical skills, make industry connections, and pursue careers in motorsports (Racing4Vets, n.d.). Veterans learn through courses delivered by experts in the motorsports industry and R4V experienced veterans and civilian team leaders (Racing4Vets, n.d.). Topics include vehicle engineering/fabrication and maintenance, sponsorship and fundraising, logistics and transportation, event management, operations management, safety and skill development, business partnerships, financial budgeting, race shop management, and competition driving (Racing4Vets, n.d.). After the courses, veterans work as a team to build and maintain their own race vehicles and undergo driver training (Racing4Vets, n.d.). With demonstration of commitment and effort, team members earn the opportunity to participate in amateur autocross, track day, or endurance road races with the ChumpCar World Challenge, National Auto Sport Association, and Sports Car Club of America (Racing4Vets, n.d.). Racing with Racing4Vets includes a team environment that promotes inclusion. The social aspect of this team may assist with the well-being and quality of life of veterans with mental health diagnoses. Along with social benefits, the physical aspects of racing can assist with mental health. The benefits of the Racing4Vets program may facilitate posttraumatic growth. Although Racing4Vets was designed to get veterans involved in motorsports careers and amateur racing, there is a need to understand the perception and experience of veteran EXPLORING THE IMPACT OF RACING4VETS 25 participants to determine how the program may influence occupational performance, posttraumatic growth, and quality of life. Section III - Methods - Instrumentation Quality improvement (QI) is a problem-solving model that utilizes systems and population-based approaches and evidence to find the best solutions to increase the quality of a project or program (Bonnel & Smith, 2018). Steps in utilizing QI include determining the problem, completing a needs assessment, finding a possible solution, implementing the solution, evaluating the success of the solution, providing feedback, and monitoring continued outcomes (Bonnel & Smith, 2018). The problem was established through review of the applicable literature; the next step in the process is the needs assessment to determine the program needs. Questions addressed in the needs assessments should include the who, what, and how of the systems currently in place (Bonnel & Smith, 2018). This includes determining the organizational structures and systems in place, the primary stakeholders, the organizational missions or goals, and the main participants. Given that this doctoral capstone project focused on a program evaluation of the Racing4Vets program, it was determined that the project did not qualify as human subjects research (Appendix A). Instrumentation In order to gain better understanding of the who, what, and how of the organization and the problem, semi-structured interviews were completed with the national President/Tampa Regional Director and the Cincinnati Regional Director (Appendix B). The interviews began with 17 items related to the demographic information about the participants, mission of the organization, and logistics on how the organization is run to determine how and who is being EXPLORING THE IMPACT OF RACING4VETS 26 served. These questions were followed by six evidence-based items related to the impact of deployment and the benefits of Racing4Vets programs. As stated above, literature indicates that the experience of war can have negative effects on an individual's well-being and may cause difficulty with the transition back to civilian life (Ahern et al., 2015; Painter et al., 2016). The overall physical, social, and psychological state of the individuals coming into the program is an important factor in understanding what needs the program should address (Scaffa, Reitz, & Pizzi, 2010); this is a portion of the who considered in the problem and needs assessment (Bonnel & Smith, 2018). Therefore, the Regional Directors were asked about their perceptions of how deployment affected the well-being and transition to civilian life of their participants. In addition to having an idea of where the participants are currently in their well-being and transition, it is important for the organizers to know what potential their participants have for growth; this is a portion of the what considered in the problem and needs assessment (Bonnel & Smith, 2018). According to the research discussed above, individuals experiencing a significant traumatic event, such as some aspects of war, have the potential for posttraumatic growth (PTG) (Tedeschi & Calhoun, 2004). Based on this information, the Regional Directors were asked for their opinions on the potential for PTG in their participants. The last aspect of a program that is important to be aware of is the potential benefit for the participants; this is the how considered in the problem and needs assessment. Based on the literature, the social support, involvement in meaningful activity, and possible psychological benefits of racing available through Racing4Vets may increase the well-being, transition to civilian life, and occupational performance of the participants (Gorman et al., 2018; Caddick & Smith, 2014; Eakman, 2014; Ramafikeng, 2010). Therefore, the Regional Directors were asked EXPLORING THE IMPACT OF RACING4VETS 27 how they believe the social interaction, meaningful activity, and possible psychological benefits experienced within the program may enhance the lives of their participants. Findings of Needs Assessment Racing4Vets is a national non-profit organization with a board of directors including CoFounders, President, Regional Directors, Webmaster/Social Media Manager, and a board member with marketing experience (Racing4Vets, n.d.). The Regional Directors are the primary individuals involved in organization and day-to-day operations. The Regional Director in Tampa, Florida is also a Co-Founder and President of the national organization and is the overseer of the other board members. The Regional Director in Cincinnati is the sole board member and organizer located in Ohio. According to the Regional Director, there are typically 15-20 veterans and 5-6 active duty participants per month involved in the Tampa chapter (J. Vann, personal communication, February 7, 2019). Participants are mainly male (approximately 90%), married, from OIF/OEF, and employed at least part time. The participants span all branches of the military and range in type of disability from invisible disabilities such as PTSD, TBI, depression, and other mental illnesses to physical disabilities such as blindness, amputation, spinal cord injury, and musculoskeletal disorders. Participants typically have a disability rating of 30-60% and participate mainly on the weekends or have a disability rating of 100% and participate more frequently and during the week. Participants spend an average of 8-12 hours per month with the program, with some participants spending up to 25 hours per month. Participants average three to six months of involvement with the program with a few participants with four to five years of involvement. The majority of the participants are at a beginning level for knowledge of racing and mechanics upon entry into the program. EXPLORING THE IMPACT OF RACING4VETS 28 The Regional Director of the Cincinnati chapter reported that there are typically five veterans involved in the outdoor program per month (K. Banfield, personal communication, February 7, 2019). Participants are primarily white males between the ages of 30-50 years old who have full time employment outside of Racing4Vets. Approximately half of the veterans involved are married or have children. The participants span all branches of the military. The Regional Director was unsure how many years post-deployment the veterans were when getting involved with the program. Nearly all participants have some extent of PTSD with a span of other disabilities in addition to the PTSD, including TBI, musculoskeletal disorders, and other mental health diagnoses. The participants average an approximate 20% disability rating. Participants spend an average of 12-15 hours per month overall with the program, with an increase to at least 20 hours per month during the outdoor racing season. Currently, participants average two to three years of involvement with the outdoor Racing4Vets program. Most participants have a basic understanding of simple mechanics and little or no knowledge of kart racing upon entry to the program. The Regional Director of the Cincinnati chapter also reported on the demographics of the veterans in the indoor Racing4Vets program. The program averages approximately 30 participants per month with mainly male participants (80-85%). Participants are primarily from the local Veterans Association (VA) PTSD and TBI inpatient programs, the local VA Domiciliary, and a local substance abuse recovery home. Typically, the participants attend two to three monthly indoor events overall, as the VA programs are 90 days and veterans come to these programs from all states. Other demographics on these participants are unknown. The Racing4Vets President discussed the foundation and mission of the organization in more detail than what is provided on the Racing4Vets website. As a veteran returning to civilian EXPLORING THE IMPACT OF RACING4VETS 29 life, the Racing4Vets President was involved in many veteran programs, mostly consisting of hero for a day programs, where there was no personal responsibility (J. Vann, personal communication, January 25, 2019). The president of Racing4Vets reported that there were a lot of programs out there, but it seemed like there was no way to have any sort of continuation of engagement. The Racing4Vets President stated: When you found something that you liked, you would ask if you could come back or volunteer in some way and they were like, No, the grant ran out. And then it was just done. The programs were not based in reality; you couldnt do these things as an ongoing thing because you didnt have the resources, there are no dolphins or horses in your backyard. So what was the value? (J. Vann, personal communication, January 25, 2019) The Racing4Vets President expressed that in founding Racing4Vets, they wanted to create a program that would require personal responsibility from the service men and women, something that would highlight the work that the participants put into it. The Racing4Vets President envisioned a program that allowed veterans to do what they love, racing, but in a way that made them earn the right to do it. As an organization, Racing4Vets would provide individuals with the tools and guidelines and then the participants do the work and make it what they want or need. The idea was to instill personal responsibility, self-confidence, and positive morale through thoughts such as if I can take care of a car or a booth at an event, I can take responsibility and care for myself (J. Vann, personal communication, February 7, 2019). Recently, the focus of Racing4Vets has shifted to three pillars including community, healing, and career. This shift was to help others see the importance of the process of the program rather than just focusing on the racing. The goal is to change the participants lifestyles and add value to their lives by giving EXPLORING THE IMPACT OF RACING4VETS 30 them opportunities to connect with veteran and civilian communities, help facilitate a focus on health and wellness related to the physical and mental aspects of racing, and increase skill sets and business connections for potential career opportunities. The Racing4Vets President stated, The cars and karts are our marketing. They are the symbol of the capabilities and hard work of the veterans, a way to show pride in what they have done and what they can do (J. Vann, personal communication, January 25, 2019). Primarily, promotion of the program happens through word of mouth; there are also attempts made on the organization's website, social media, and booths at various shows in the community (K. Banfield, personal communication, February 7, 2019; J. Vann, personal communication, February 7, 2019). Fundraising typically occurs simultaneously with promotional opportunities. There is a donation tab on the website and there is a donation box and conversations with possible sponsors at the booths during shows. Racing4Vets also participates or volunteers with other organizations as fundraising opportunities. Currently, there are some attempted applications for grants, however, the organization has yet to receive any grant funding. According to the Regional Directors, there have been occasional attempts to have informal discussions with participants in order to gage their growth in the areas of community, healing, and career to utilize on the website for promotional and fundraising purposes; however, the benefits of the programs have not been formally assessed or tracked in any way. In general, the regional directors believe that deployment has had a negative affect for the participants well-being and transition into civilian life (K. Banfield, personal communication, February 7, 2019; J. Vann, personal communication, February 7, 2019). They believe that the participants continue to struggle with the physical and mental effects of war, that negatively impact well-being and the transition. Another difficulty noted in the transition is that the EXPLORING THE IMPACT OF RACING4VETS 31 participants may not have a buffer between military life and civilian life due to a lack of understanding of the toll and impact that deployment has on the bodies and minds of these participants (J. Vann, personal communication, February 7, 2019). Overall, the Regional Directors believed that the participants have the potential or have already experienced PTG (K. Banfield, personal communication, February 7, 2019; J. Vann, personal communication, February 7, 2019). One comment implied that a large factor in PTG is the amount of community engagement, and that programs that promote community involvement are vital to PTG (J. Vann, personal communication, February 7, 2019). The Regional Directors believe that the program has a large impact on participants through the social, physical, mental/emotional, and meaningful activity aspects of the programs (K. Banfield, personal communication, February 7, 2019; J. Vann, personal communication, February 7, 2019). Both the indoor and outdoor programs facilitate social support and growth in community; however, indoor events are limited to service men and women. Based on observation, one of the Regional Directors noted that the participants in the indoor program tend to congregate around the individuals they are familiar with and there is little mingling across groups (K. Banfield, personal communication, February 7, 2019). However, in the outdoor programs, both Regional Directors commented on how the participants grow as a community themselves to create a sense of belonging and facilitate accountability, responsibility, and commitment (K. Banfield, personal communication, February 7, 2019; J. Vann, personal communication, February 7, 2019). They also noted how participants in the outdoor programs reach out and make friendships and connections at the racetracks with civilian competitors. This leads to social support among the participants as well as providing a way to connect to the broader community. EXPLORING THE IMPACT OF RACING4VETS 32 Both Regional Directors expressed that the physical act of racing is beneficial for the participants through adrenaline, release of endorphins, and expression or release of emotions (K. Banfield, personal communication, February 7, 2019; J. Vann, personal communication, February 7, 2019). It is also a way for the participants to feel excitement, control, and achievement. According to the Regional Directors, engagement in meaningful activities through Racing4Vets contributes to the well-being, quality of life, and growth of the participants in a similar way as the social and physical aspects of the program. With the outdoor programs, they note that it is clear that racing and the activities surrounding racing are important and meaningful in the lives of the participants. The main aspects they feel this meaning brings in the well-being of the participants is the creation of personal responsibility, motivation, and self-confidence. The needs assessment revealed that the regional directors have a general idea of the demographics, the possible effects of war on well-being and the transition to civilian life, and the potential social, physical, and psychological benefits on the well-being and growth of the participants; however, specific data on these aspects of the program are unknown due to a lack of methods to measure these benefits. According to the QI process, after implementation of a program, an evaluation should be completed to determine the effectiveness of the program (Bonnel & Smith, 2018). Demonstration of the effectiveness is required to provide justification for continuation of the program (Scaffa et al., 2010). Due to a lack of appropriate evaluation, the Racing4Vets programs would benefit from a program evaluation based on the existing mission and goals of the organization. The program also has not been explored or evaluated for potential benefits beyond the mission and goals of the Racing4Vets organization. Based on relevant literature, Racing4Vets may increase well-being, quality of life, PTG, and occupational performance of the participants. Therefore, this doctoral capstone project will focus on EXPLORING THE IMPACT OF RACING4VETS 33 evaluating the current programming according to the Racing4Vets mission and goals and the exploration of additional potential benefits. Results of this project may be useful for further program development as well as promotional and fundraising opportunities. Section IV - Methods - Intervention Exploring and evaluating the benefits of the Racing4Vets programs was accomplished through the following inventories and evidence-based interview questions. Each inventory was modified to match the participants and scope of this project. The Tampa chapter and the outdoor Cincinnati participants completed 16-18 demographic questions, the Posttraumatic Growth Inventory, five perceived competence scales, the Military to Civilian Questionnaire, and nine evidence-based, open-ended questions through an electronic survey created via Qualtrics (Appendix C). The outdoor team members also completed semi-structured, one-on-one interviews in private rooms at the indoor go karting facility (Appendix D); interviews were video recorded for transcription and potential promotional purposes. The indoor Cincinnati participants completed a printed survey including six demographic questions, the Physical Activity Enjoyment Scale, and five evidence-based, open-ended questions (Appendix E). Instrumentation Posttraumatic growth inventory. The Posttraumatic Growth Inventory (PTGI) may be utilized to determine to what extent Racing4Vets facilitates PTG. The PTGI is a 21-item survey utilized to quantify an individual's personal growth since a traumatic experience (Tedeschi & Calhoun, 1996). The PTGI is scored in 5 separate categories including new possibilities, relating to others, personal strength, spiritual change, and appreciation of life. In tests of concurrent and discriminant validity, authors determined that there was a significant correlation between PTGI values and the personality traits of optimism and extroversion (Tedeschi & Calhoun, 1996). In EXPLORING THE IMPACT OF RACING4VETS 34 tests of construct validity, authors determined that women and individuals who have experienced extraordinary events correlated to higher PTGI values (Tedeschi & Calhoun, 1996). Overall testing for psychometric properties of the PTGI, indicated good internal consistency, acceptable test-retest reliability, and a relatively normal distribution (Tedeschi & Calhoun, 1996). The authors report, the scale appears to have utility in determining how successful individuals, coping with the aftermath of trauma, are in reconstructing or strengthening their perceptions of self, others, and the meaning of events (Tedeschi & Calhoun, 1996, pp.455). The PTGI and the concept of PTG has been utilized with various populations, including veterans, in relation to sports and recreation. Veterans with combat-related PTSD or TBI participated in a 5-day recreation and sport camp for either watersports, fly fishing, or snowsports; the camp was designed to teach the veterans recreational activities in hopes of continuation of the activities on their own after completion of the camp (Bennett, Townsend, Van Puymbroeck, & Gillette, 2014). The PTGI was one outcome measure utilized. Change in PTG from the beginning to the end of the five days approached significance (Bennett, Townsend, et al., 2014). Authors report that this result is unsurprising due to the short duration of the program and the long-term process of PTG, however, are hopeful of continued PTG with continuation of recreation after the camp due to the 7.2% increase in PTG within the 5 day period (Bennett, Townsend, et al., 2014). Based on qualitative interviews regarding PTG, individuals with spinal cord injuries and cancer noted increased PTG following recreation through opportunities to discover unique abilities and hidden potential, discover a sense of self, build companionship and meaningful relationships, make sense of traumatic experience and find meaning in everyday life, and generate positive emotions (Chun & Lee, 2010; Vercillo, 2014). EXPLORING THE IMPACT OF RACING4VETS 35 This evidence suggests that the PTGI and qualitative data gathering are appropriate measures to evaluate the benefits and extent of PTG facilitated by the Racing4Vets program. Perceived competence scales. The Perceived Competence Scale (PCS) may be utilized to determine the individuals self-perceptions of knowledge and skill in relation to the community, healing, career, and racing. In general, the PCS is a four-item self-report questionnaire rated on a seven point Likert-like scale; the scale is adapted for each use in order to match the topic in question (Choi, Mogami, & Medalia, 2010). Authors reported high internal consistency (Cronbach alphas between 0.80 and 0.94) and good construct validity for various versions of the PCS (Williams, Freedman, & Deci, 1998; Choi et al., 2010). The PCS has been utilized to determine individuals perceived competence in various topics including disease management, self-belief, learning of new techniques, and sports and recreation with various populations including veterans (Williams, Freedman, et al., 1998; Williams & Deci, 1996; Choi et al., 2010; Bennett, Townsend, et al., 2014). The authors of the article about the five-day sports and recreation camp for veterans with PTSD and TBI mentioned previously, utilized the PCS as a pre-test and post-test measure to determine if the veterans gained knowledge and skill related to the sport or recreational activity (Bennett, Townsend, et al., 2014). Within this study, there was a significant increase in perceived competence of the veterans (Bennett, Townsend, et al., 2014). This suggests that the PCS may be an appropriate outcome measure to assess the Racing4Vets participants perceived competence in community, health, skills, and racing. Military to civilian questionnaire. The Military to Civilian Questionnaire (M2C-Q) may be utilized to assess the level of difficulty with reintegration experienced by the participants of Racing4Vets. The M2C-Q is a 16 item self-report questionnaire measuring community EXPLORING THE IMPACT OF RACING4VETS 36 reintegration difficulty on a five-point Likert-like scale ranging from No difficulty to Extreme difficulty (Sayer et al., 2011). Items addressing relationship with spouse/partner, relationship with child/children, work, and school have the option of Does not apply (Sayer et al., 2011). The questionnaire addresses the main factors of community reintegration identified in research including interpersonal relationships with family, friends, and peers; productivity at work, in school, or at home; community participation; self-care; leisure; and perceived meaning in life (Sayer et al., 2011). The score can range from zero to four and is determined by the sum of the ratings divided by the number of items reported, with a higher score indicating greater difficulty with reintegration (Sayer et al., 2011). The questionnaire has strong internal consistency with a Cronbachs alpha of .95 (Sayer et al., 2011). Initial construct validity was supported through correlation of M2C-Q scores with individual factors including overall mental health, probable PTSD, problematic substance use, and a rating on perceived overall difficulty with readjustment to civilian life (Sayer et al., 2011). The M2C-Q is the primary outcome measure utilized within a study protocol for research to determine the effects of exercise and social interaction on the community reintegration of veterans (Baird, Metts, Conroy, Rosenfield, & Smits, 2018). This indicates that the M2C-Q may be appropriate to determine the effects of the physical, mental, and social aspects of Racing4Vets on the community reintegration of the veteran participants. Physical activity enjoyment scale. The Physical Activity Enjoyment Scale (PACES) may be utilized for the indoor Racing4Vets events to determine the extent that the veterans enjoy karting (Kendzierski & DeCarlo, 1991). The PACES is an 18 item self-report questionnaire with a seven-point bipolar scale (Kendzierski & DeCarlo, 1991). The PACES has high internal consistency with a Cronbachs alpha of .93 (Kendzierski & DeCarlo, 1991). There is also preliminary evidence in the construct validity of the measure due to its significant negative EXPLORING THE IMPACT OF RACING4VETS 37 correlation with a boredom outcome measure (Kendzierski & DeCarlo, 1991). A variation of the PACES has been utilized with the veteran population (Padala et al., 2017). In a study of 27 veterans 60 years old or older that focused on the effect of Wii-Fit on balance, the PACES-8 was utilized to measure the enjoyment of the veterans during the activity (Padala et al., 2017). This suggests that the PACES may be an appropriate outcome measure to determine the extent of enjoyment of the physical aspect of karting with the indoor Racing4Vets program. Semi-structured interviews. Semi-structured, evidence-based interviews were also utilized to collect more descriptive data. The regional directors had a general idea of participants military experience and the relation to well-being, disability, and the transition to civilian life for their participants; however, they did not know specifics; therefore, questions on these topics were asked of participants as suggested by literature (Ahern et al., 2015; Painter et al., 2016). Questions also include aspects of knowledge and skills learned from the program to address the effectiveness of the Racing4Vets programs in the career pillar (J. Vann, personal communication, January 25, 2019). Based on evidence for the mental and physical aspects of racing, participants were asked to describe if and how they perceive these benefits (Caddick & Smith, 2014; Ley et al., 2018). Social aspects of the program are designed to facilitate support and community involvement (J. Vann, personal communication, January 25, 2019). Participants were asked how they perceived the social context and if they experienced any social or community growth. Research indicates that individuals may experience growth after trauma and the Racing4Vets programs are designed to facilitate growth in the personal, social, and purposeful aspects of the participants lifestyles (Tedeschi & Calhoun, 2004; J. Vann, personal communication, January 25, 2019). Therefore, the interviewer asked participants about selfperceptions of growth in these areas. Participants were also asked to express the best aspects of EXPLORING THE IMPACT OF RACING4VETS 38 Racing4Vets and why others should become involved due to the lack of promotional content for the organization (K. Banfield, personal communication, February 7, 2019; J. Vann, personal communication, February 7, 2019). Section V-Outcome and Discontinuation Cincinnati Outdoor Program Participants. Seven participants completed semi-structured interviews and the Cincinnati outdoor survey. One participant did not complete the demographic section. Participants were males between the ages of 30 and 51 years old with an average of 40 years old. The majority of participants have full-time employment outside of Racing4Vets, with one participant unemployed. Approximately half of the veterans involved are married and all but one participant have two or more children. The participants have various military experiences. Three participants have served in the United States Army, two in the United States Army National Guard, two in the United States Marine Corps, and two in United States Navy. Participants averaged approximately three years active duty, with the majority serving 4 years or more part time service in the Reserves or National Guard. Participants had up to 3 years of deployment with up to 3 deployments. From the date of data collection, participants average 18.5 years post service. The most common diagnoses are PTSD and depression, with some anxiety, substance use disorder, and minor physical injury. The average reported VA disability rating is 30%. Participants spend an average of approximately 21 hours per month with the program in the off season, with an increase to an average of approximately 44 hours per month during the outdoor racing season. Currently, participants average 2.3 years of involvement with the outdoor Racing4Vets program. Most participants had a basic understanding of simple mechanics and an interest in racing upon entry to the program. EXPLORING THE IMPACT OF RACING4VETS 39 Military to civilian questionnaire. The average combined score on the M2C-Q for the veterans in the outdoor Cincinnati program was 1.80 on a zero to four scale. According to the scale, this score indicates that the veterans in this group had between a little and some difficulty overall with their transition to civilian life. On average, the veterans in this group scored the highest, indicating more difficulty, on confiding or sharing personal thoughts and feelings (2.67) and enjoying or making good use of free time (2.5); both indicate participants rated these items between some and a lot of difficulty. Posttraumatic growth inventory. The veterans in the outdoor Cincinnati program averaged a score of 2.82 on a scale of zero to 5. This score indicates that the veterans selfreported small to moderate growth overall. According to the PTGI scale, this group of veterans reported moderate (3.0) growth in two of the five categories including Appreciation of Life (3.22) and New Possibilities (3.l6). Perceived competence scales. The veterans scored the highest, indicating the most competence, for the Skills scale with an average score of 6.00 on a scale of zero to seven. This result indicated that participants moderately agreed (6.00) with having competence in their skills for working on the karts. The average self-reported competence of the veterans on the Community (5.79), Racing (5.46), and Healing (5.25) scales indicated that participants slightly (5.00) to moderately agree with having competence in connecting with others, competing in amateur motorsports, and maintaining positive well-being. Participants rated perceived competence the lowest for the Health scale with a 4.75, indicating participants were between neutral and slight agreement with their competence to maintain a healthy lifestyle. Semi-Structured Interviews. Four main themes emerged from the Cincinnati outdoor interviews and qualitative survey questions including reintegration, supportive environment, life EXPLORING THE IMPACT OF RACING4VETS 40 change, learning, and program involvement. The theme reintegration encompassed the subthemes positive aspects of military experience, negative aspects of military experience, and differing culture. Most of the participants commented on how the military was a positive time in their life. One participant explained the hard work and dedication utilized during military service through the following statement: I, uh, did everything I could do on my own, gave it my all, and graduated first out of my accompany, uh and got meritoriously promoted, and was allowed to choose any ACE school in the Navy I wanted to, so, I said, hey I just wanna be a medic and they said, hey, sign the paper, kid, and, uh, so I did, so tacked on two more years to my career, but, uh, uh, that-thats great, I, uh, I had a great career, uh, in service. (Participant 3) Many noted the positive influence of the military through the skills they developed. One veteran stated, I would say the military experience has, uh, allowed me to have confidence in decision I make, whether it be in business or personal life (Participant 2). Another participant stated: I met a really good group of guys there, gained a lot of experience, and, um. It was at that point in my life that I realized I, uh, I was a leader...the military, just helped me develop a good set of, uh, work hard ethics and taught me that, ya know, anythings possible under the worst cir-circumstances. So its-, an-and helped me get to where I am today. (Participant 6) One veteran expressed that being in the military, it-it, uh, it actually gave me a little bit of direction. Ya know, um, gave me a little bit more discipline in my life. Ya know, because before the Marine Corp, ya know, I-I really didnt have much direction (Participant 4). Another participant noted both the good and the bad about the military experience. This participant reported, my military experience, uh, definitely helped develop me as a person, um, as a leader, EXPLORING THE IMPACT OF RACING4VETS 41 um. Definitely some of my fondest memories and, um darkest nightmares both have come from time in the military (Participant 7). This idea leads to the next subtheme of negative effects of the military experience. Several participants reported negative effects of service on their mental health. Some discussed the conditions they have as a result of their service including PTSD and substance abuse. One veteran expressed the following: I have PTSD. Um, just I lost 14 friends in a helicopter crash ya know, I got-I got some good days and I got some bad days. Um, ya know, I-I suffered with it for a long time before bu--people really knew what PTSD was I dealt with it for years and years and years dealt with it pretty well for the most part I ended up having a nervous breakdown So, I lost my home; my marriage; um, my three kids; my job; everything-all at one time. Um, and I was put out on the street, evicted from my home. Um--that was, that was tough After 3 years of trying to see your kids, ya know, and you go from, ya know, 31 dollars an hour down to nine, ten bucks an hour eventually I, ya know, I-I screwed up and I went to heroin because I just didnt care anymore, I, uh, I got addicted to drugs. Um, ya know, trying to deal with the PTSD, trying to deal with life, on lifes terms, um; ya know, I did that for, ya know, off and on for, a couple years...I pretty much isolated myself away from my family. Um, I figured thats what I deserved Um, it ended up, I guess, in-in the long run, I, the smallest amount that I ever did, um, killed me. And I woke up to the Cincinnati fire department, um, administering Narcan to me, which if I didnt have that drug, then, uh, I wouldnt be alive today. (Participant 3) Another participant also discussed problems related to PTSD: I currently go to PTSD therapy on a weekly basis, um, at one of the top two, um, trauma centers in the country Just trying to figure yoursel--who you are, anymore after its all EXPLORING THE IMPACT OF RACING4VETS 42 gone. Um, a lot of things you found happiness isnt there anymore, um, ya know. For me, I emotionally disconnect to my fa--from my family while I was overseas, just cuz the mindset. Um, something I still struggle with now is emotional closeness to others...theres a lot of things I deal with on a daily basis, on, negatively impact my life... Trusting anybody, paranoia, um, I didnt leave my parents house for the first 2 months I was home; let alone, uh, I used to s-, like, I wouldnt even leave my bedroom for awhile, as well...I did a lot of self-medicating for a few years when I came back home. Um, didnt know how else to sleep; um, probably, wasnt the easiest way to, um, get help psychologically. (Participant 5) One other veteran mentioned the effects of PTSD on the reintegration process through the statement: [C]oming home from a combat zone, uh...dealing with PTSD from just the stress of dayin, day-out not knowing what was gonna come from that day. Um, having friends get blown up, um, while overseas, that was very stressful. Unfortunately, in, in, uh, Afghanistan, where we were, you never knew where the--there was not front line, so we didnt know if-if today was the day that something was gonna happen. And, quite honestly, I didnt really have the effects, feel the effects much of the, of the combat, uh, environment until I got home and was able to kind of relax and unwind is really when it hit me. And, uh, nightmares, an-and, uh, the what ifs really, really started to play rec-, reek havoc on my, uh, psyche dealing with, uh, uh, ya know, um, ya know, for me it was the what-what could have happened and-and what-what did happen to some of my friends that-that did, uh, get blown up, um, while we were overseas. Uh, dealing with EXPLORING THE IMPACT OF RACING4VETS 43 that, like psychologically was a lot more challenging that I thought-anticipated it would be. (Participant 7) Although another participant denied having a service-related condition, there were still difficulties according to the following discussion: I had a short service, due to some, uh, personal issues, uh that I had to come out and take care of things, with my family, uh, I felt that my career had uh run short...I had to come back home to raise my son...The one challenge I had was, not really regret, but, the, I-I guess, ya know, trying to, make peace that getting out was the right thing to do And, uh, I-I know it was the right thing, but then theres the heart strings pulling the opposite direction ya know, cause I really loved what I did. (Participant 2) Many of these same participants also had difficulty reintegrating into everyday occupations in civilian life such as social participation with family and work. One participant mentioned the difficulty experienced with his role in family life through the following statement: [T]he biggest challenge was really tryin to figure out, uh, get back into the swing of dayto-day life not only are, as a serviceman were you deployed, but your-your spouse and your family and friends are deployed as well, uh, in essence; cause they learned to live without you. Um, coming back and trying to pick up right where you left off is a-kind of a fairytale, cause its just not gonna happen. So figuring out how to try to work your way back into the family dynamics. (Participant 7) One participant had difficulties with work due to mental health. This participant reported: [W]hen I got out, I was an emotional wreck. I was not gonna stand in front of a new potential employer that I wanted to do that was related to my military job, um, because it wouldnt be an honest thing to say, Hey, Im the best employee youll ever have. Ya EXPLORING THE IMPACT OF RACING4VETS 44 know, the typical things you do on an interview; I couldnt do it cause it wasnt from the heart--it wasnt directly honest, cause I know I was a mess. Um, and so I went back to my employer and Ive been there for 25 years. (Participant 2) Another veteran struggled with work due to a lack of translation of experience into civilian culture. This veteran reported: Um, when I got out, unfortunately you have to have, uh, papers, i guess--apparently to do, uh, EMT stuff or, uh, to be a paramedic in the civilian world, so I had--I was pretty much a doctor in the military, and when I got out, I didnt have any certifications, so, I, uh, went back to UPS, driv--ya know, driving for them. (Participant 3) Other participants also expressed difficulty with the transition into the civilian workforce due to the change in culture. One of the participants stated: I would probably say the most challenging woulda been, uh, uh, ya know, when youre in the military, uh, ya know, everyone signed up for it. It wasnt like a-a job that you go and apply for; and youve got to work with people you dont like and you, ya know, in civilian life you can quit your job, you can leave. In the military, you cant. Youre contracted to be there whether you like it or not thats the one thing I had a hard time with in-in civilian life, was coming back, that, ya know, I was working with people who didnt really care and Im thinking to myself, well then, why dont you leave? And theyre there in their lives everyday being negative and I-I would have nothing to do with it. (Participant 2) The other participant discussed a similar issue through the following: [M]ost soldiers are fairly disciplined and when youre told to do something or you tell someone to do something, you expect actions. And, in a working environment, th-th-the EXPLORING THE IMPACT OF RACING4VETS 45 common workplace isnt just like that. So, trying to readjust and find different methods of gettin something done or asking someone or telling someone to-o-do something is a completely different reprogram of how you get things done. Instead of just do it and it happens, its-you gotta, just play psychological games and figure out how different people react an-and work best with instruction. (Participant 6) A veteran who did not report a service-related disability noted a different way that the shift in culture made the transition difficult. This veteran noted: [I]t is challenging, when-when ya go-, come off of active duty and go back into civilian life, due, due to the fact that, ya know, when you were in the Marine Corp, you had, you-, stable housing, and, uh, you didnt have to worry about your meals, ya know, because every-everything was pretty much given to you, and already taken outta your check. Ya know, you already paid for that pre.., uh, up front, cuz it did come out of your check. So, when you come back to civilian life, you know, when you actually get a job, n you have to pay your own rent, n its a lot more responsibility, ya know. (Participant 4) Supportive environment includes the four subthemes of connection to military, support, family, and camaraderie. Many of the veterans noted that Racing4Vets has allowed them to reconnect with the military, which has been missing since their service ended. One veteran noted: [T]he impact Racing4Vets has had on my life, again, kinda givin me that, um, connection back to the military, havin, um, guys and gals that, um, that have served; thats always, ya know, kind of a unique, um, kinda considered the largest br-, uh, fraternity/sorority in the world is the military. Um, so, ya know, havin that connection again is always good. (Participant 7) EXPLORING THE IMPACT OF RACING4VETS 46 Another expressed, I have that brotherhood, again. Um, which is something that I dearly missed (Participant 5). One veteran reported: [I]ts been a really fun experience as far as getting me socially connected with people who are like-minded, who, uh, ya know, uh have the same goals and have the same experiences in the military that other people wouldnt understand, um, so it kind of got me reconnected to, uh, to doing what I loved (Participant 2). All participants mentioned the support given by the other team members. One veteran discussed this support via this statement: Whatever it is, a-a bad day, whatever it is a good day, it doesnt matter, you can pick up the phone at any time, call any of these guys, and theyre gonna be there. So, its almost like the veteran crisis line, ya know, somebodys gonna answer that phone. And somebodys gonna be there, whether its good or bad, they dont care, theyre not gonna judge. (Participant 3) Another participant reported, I feel that I-I can discuss pretty much anything with em. Ya know, the good, the bad, ya know...Where you can discuss, ya know, if youre having a bad day, you can, discuss it with em, n, theyll do their best to help you (Participant 4). Yet another veterans stated, I think were, were a, a small, but cohesive group. Um, definitely the group is, looks out for one another, call-call one another just to check in from time to time. But, its good to have a battle buddy, um, thats, thats gonna look out for each other (Participant 7). The theme continues with another participant who expressed: [W]e support each other...We check in with each other on a regular basis, ya know. People who are struggling, they have good months and bad months and were always calling em and checking up on em. Do you need a hand? This and that, or get your EXPLORING THE IMPACT OF RACING4VETS 47 [butt] up, ya know, youre-youre messin up, ya know. And we pull em back into line...we are an unconditional team; we will accept, take and help you any which way you can or want to. (Participant 6) Others also mentioned the support in ways suggesting that the team is always there. One veteran stated, [W]hen you look back and youve, you see a teammate behind you racing, you know youre okay, because theyve got your back (Participant 2). Yet another participant emphasized, Worst comes to worst, at least you know that youre not alone (Participant 5). Another added to this idea stating; [W]hatever it is, if-if youre in your head, if youre traumatized, um, if your got something that triggers you, that, ya know, bad day, whether youre gonna go drink or youre gonna stick a needle in your arm, whatever its gonna be This is a place, and an organization, where you can act like its AA or NA, ya know. (Participant 3). Many of the veterans in the Cincinnati outdoor program commented about how the other team members have become like family. One participant stated: Theyre not gonna judge you, no matter what, theyre, um, theyre the best group of guys, ya know. They-theyre a father figure, ya know. Yeah, I can say the one, one is a mother figure, ya know. She really is. Um, I dont know, its just family. Its just family. If-if youre a family person, thats where ya need to be; this is where you need to be...youll find another family, and if you dont have a family, or if youre lost, ya know, youll be found...Youll-youll feel at home, again. (Participant 3) Another veteran reported, [I]ts good to have that, like that family, again, outside of, ya know, my blood family. Just cause, um, its relative lifestyles and situations weve been through (Participant 5). EXPLORING THE IMPACT OF RACING4VETS 48 Nearly every veteran discussed the subtheme of camaraderie. One participant focused on this theme throughout the interview with the most clear statement being, Racing4Vets to me means camaraderie Quick, easy, and simple (Participant 4). Another participant noted, [I]ts all about camaraderie and I feel that, um, Racing4Vets has increased the camaraderie of the [racing] club from what Ive seen and-and heard from prior (Participant 6). A few of the other veterans expressed their experience with the camaraderie. One stated, I like the camaraderie you get with, uh, hanging out with the, uh, veterans, ya know, its guys from different branches; you can kinda rip each other a little bit (Participant 1). Another explained, I really like gettin my hands dirty, um, wrenchin, jokin around with the guys and gals (Participant 7). Overall, these factors give Racing4Vets a positive, encouraging environment that fosters growth as explained by two of the participants. One expressed: [W]e wanna provide an environment of, of, uh, racing thats something different than, ya know, going to a hospital and talking to people all the time, cause ya kinda know driving to a hospital that Ya know, ya gotta open yourself up now to talk and listen to other people all the time and, um, when youre racing, youre-youre talking and listening to kinda the same thing, but youre in a racing environment and its, its kinda fun, ya know. (Participant 2) The other participant expressed how this environment has been a reality through the following quote: [Racing4Vets] got me outta my element, and recently, I mean, I-, sadly to say, like, my element was more like reclused, but, uh, luckily enough, like, Ive at least felt comfortable enough in this environment to come back. Um, I know at least, in this situation, with me, EXPLORING THE IMPACT OF RACING4VETS 49 I see doctors at least 2, 3 times a week, um, at least its something that, um, a positive aspect on my mental health that, um, I dont have to fill out any paperwork. (Participant 5) Another of the four main themes is life change; this theme includes increased mental health, meaningful activity, community, career, helping others, and personal growth. Several of the participants discussed how Racing4Vets has increased their mental health. One of the most powerful quotes to express this subtheme was: I try to make jokes of everything, cause laughters the best medicine. Ya know, um, before, I wasnt; I would just be quiet, ya know, and I mea--I was in a dark spot in my head. Theyve pulled me out of that darkness and brought me to the light; they really have. Um, I mean, I-I can honestly say that Aaron Banfield, ya know, the-Full Throttle, and, ya know all the guys, theyve, pretty much saved my life. Honestly, I-I, I mean, if I was gonna really put it into terms like that, yeah, they-theyve saved my life; this whole program has They keep me happy. Ya know, happiness was something that was very hard to find for a long time and, uh, for the first time in a long time, as of recent, since Ive been with these guys, it-its backit gets me outta my head. It-it makes me feel good because I know those guys are gonna be there; I cant say enough about how great this organization really is, um, and how blessed I am to even have it. (Participant 3) Another participant mentioned a similar idea when expressing that Racing4Vets helps with gettin your head outside of what, um, kinda clear your head of what else is going on in your life. Um, give you an opportunity to kinda relax (Participant 7). Another veteran expressed: I know for me personally, it was really hard for me to feel--anything, really other than anger or irritability or shame or guilt for a long period of time and, um, it at least gave EXPLORING THE IMPACT OF RACING4VETS 50 me a brighter outlook. It gave me more, uh, optimistic outlook on things, just from helping others, really being around others when they experience--and you can just see, like--carefree. Sometimes, its all someone needs. (Participant 5) Other participants noted a similar idea that helping others influenced their mental health. This is demonstrated through the following: Id say definitely has helped with mental health as far as, again, having the positive experience um, again, my, my biggest thing is making other people happy is makes, what makes me happy, um, to a fault sometimes, but, uh, thats definitely a-a different, uh, avenue to for me to help others. (Participant 7) One participant expressed how others have seen the change in mental health through the statement, my wife and my family, my kids, ya know, they-theyve allowed me to do this because they know that its made a difference in my life, its made me a happier person, its made me happier about myself and, and what I do (Participant 2). One subtheme was that Racing4Vets provided participants with a meaningful activity. One veteran noted that the program provides a good opportunity to get outta the, get outta the day-to-day tasks or routines and do somethin thats a lot of fun (Participant 7). Another participant added, it gives me somethin to look forward to, ya know (Participant 4). Others expressed how vast the meaning of this program has been for them. One veteran stated: I would just go home and sit and isolate, and ya know, let my thoughts spin into a spider web, I dont do that anymore, ya know...it keeps me busy, keeps me focused, and it keeps me from doing other bad [stuff], so.., so, thats a It does everything for me. It keeps me focused I wish it was every weekend, I wish it was every day; I dont want to leave this place, ya know. Its like, ya know, when you leave here, ya know, you go back to life on EXPLORING THE IMPACT OF RACING4VETS 51 lifes terms, which is fine, ya know, you-you gotta live that anyway, no-no matter what, but, uh, its always fun when you have some competition. (Participant 3) Another participant expressed: [I]ts pulled all of these things in my life that have been kinda loose strands and kinda made it a rope. Ya know, its actually starting to pull things together and um it gives me purpose. Not that we dont have purpose before, we have our families and our kids to raise and ya know, we have our jobs...ya know, but, and then we have this definition called hobbies, ya know, well, Racing4Vets is, to me, more than a hobby. (Participant 2) One other veteran shared a similar experience as demonstrated by the following: Im an artist, Im an, an adrenaline junkie, and Im, uh, Im a leader, Im and inventor, and it-it-it covers such a broad spectrum of what I need and want and crave, and, so, it satisfies me on that. It-it keeps me busy...there is always a challenge here. Whether it be mechanically or emotionally, its, um, it-it, its keep, keeps you busy...If I left [Racing4Vets] there would be a hole in my life. (Participant 6) Many of the participants also noted how Racing4Vets has impacted them in relation to community. Some expressed how the program increased their connection with the military as reported above, which increased their involvement in the veteran community, however, others expressed their inclusion into the racing community. One participant explained: Ive met a whole bunch of people who share the same thing with karting ya know, it kinda goes way beyond karting, it goes toward the racing community and, uh, the village...when you hear about professional drivers talking about how the racing community is great, ya dont know it until you experience it. You can hear it and it ve just like another show, another advertisement or whatever, but until youre actually there...its that type of EXPLORING THE IMPACT OF RACING4VETS 52 guineuine fun that everybody kinda seeks to get together, um, and ya know, Racing4Vets is, has been proud to be a part of that group, ya know...its not only a community, its kinda a way of life. (Participant 2) Another veteran described the racing community as follows: [T]he racing community the OVKA [Ohio Valley Karting Association] community, its a small club and you see a lot of cut throat action and animosity and like everybody just is, this is my stuff or whatever, but then at the same time, its, um, theres a lot of good people that are just, will help you, no matter what. Ya know, i-if ya gotta give a guy a part to help him get along or give him some advice or whatever, at the-at your own expense, so be it. (Participant 6) In addition to the racing community and veteran community that they gain from Racing4Vets, some participants noted their increased involvement with the broader community. One veteran expressed: [T]his team would not run without the community, it wouldnt run without people who, who give to support us and it does, it wouldnt run without people who donate. Um, and for us to do that, we have to reach out...fortunately Ive been, ya know, blessed to, uh, meet a lot of different people through our sponsors, um, and the negotiation is-is a partnership, its a trust. (Participant 2) Through the connections made within the program, some of the participants have changed careers. One veteran noted: Im part of Aarons network of people...and it-it-its been lots of good things. Um, I had a career change and, um, I landed, uh, I-I sold my business and went to work for...a friend of Aaron Banfields and, um, the production manager there. And, instead of my EXPLORING THE IMPACT OF RACING4VETS 53 skills being used for seven or eight people, which, uh, worked with me, I now get to work with about 50 people and my, my skills are spread out amongst them. (Participant 6) One other participant expresses a similar situation due to his involvement in the program. This participant stated: Im moving on to something else, a whole new career, so its--and that wouldnt have happened unless I was connected with this team because a lot of the friends, people who see me from outside the box, are looking at me, and they, they know me well...They know if youre truly happy a lot of them had said, man you need to move on, do something different cause youre this and youre that that was part of my decision, is, hey, its time to move on. (Participant 2) Every participant mentioned how Racing4Vets has impacted their life through helping others. This aspect of the program is one of the most important according to one participant as expressed in the following quote: Racing4Vets, on a personal level, has meant the most to me because of my best friend... He has, uh, struggled with s-some issues through life, depression, this and that, and, after me being in Racing4Vets for awhile, I invited him into the group. And, its been really good for him[T]hat means a lot; to be able to help people, I-I, ya know, the most important thing in life is helping people. It-its not, its not how much money you make or how fast of lap time your turn, its, its what happens off the track; its th-the nights we get to spend, on the overnights up there or the days, the waking up at five oclock in the morning and picking, um, a veteran up, an-an-and, ya know, the hour and a half long trip out to the track, ya know, you discuss some racing, you discuss some personal life anand, its, i-its Racing4Vets is just a coagulant for that activity...So, its a two way EXPLORING THE IMPACT OF RACING4VETS 54 street. Me helping people is also helping me because its what I need and like to do. Its just, whats natural...meeting the guys on the team and meeting the people that come through here once a month, being able to help them, is, uh--this is my church. Uh, Racing4Vets is my church. Uh, I-I like being part of this congregation. (Participant 6) Many of the other veterans share a similar experience. Another participant expressed: I know weve got guys, uh, and girls that have been on this team that its made a difference in their lives. Its allowed us to, connect, um more, I get calls in the middle of the night sometimes, Hey, ya know, Im having a hard time. Whats going on? Im in my truck and Im out headed to their house. Its Hey, whats going on? Talk to them. Just to, just allows me to kind of give back, ya know...theres that guy or that girl that needs it, and so I know that, ya know, all this stuff pays off as I see the smiles on the face or the happiness and the people that show up, my friends that, ya know, maybe a couple drivers that show up that havent been there for awhile and pop up out of nowhere and its like Hey whats up? Ya know, you know that they havent forgot. Ya know, you know that you made a difference in their life. (Participant 2) Some of the other participants discussed the indoor events and how they feel those events affect the other veterans and in turn increase their well-being. One participant reported: [T]he greatest feeling is usually leaving here on a Saturday after one of our indoor events and just seeing, ya know, one of the folks that may be struggling with something thats coming up from a different p-, one of the programs from the VA, just seeing them with a big smile on their face and feeling like you actually made an impact on somebodys life in a positive way. (Participant 7) EXPLORING THE IMPACT OF RACING4VETS 55 Another veteran expressed: [I]ts fun to see guys that havent had that exposure out there ya know kinda get out, have some fun. Uh you know, some of them are going through some issues here and there and uh, its a chance for them to have some fun, hang out with some more veterans, and uh try to giveem some pointers on how to go faster on the track...if you can help support some other guys get, you know, every now and then, you know, some vets do have some issues, you know, adapting back to, you know, civilian life and you know if I, if I can lend a hand there to kind of help a guy get, you know, uh better situated to the civilian life you know, I-I like being there for that. (Participant 1) Similar to the previous quote, another participant emphasized this overall mission when getting veterans involved with Racing4Vets in the statement: [O]ne of our main focuses is to try and get the veteran off the couch; try to get em so that theyre not sticking, ya know, ways, theyre not finding ways to end their lives, its just, were losing 22 a day. And, if we can get that down to 21 a day, if we can get that down to zero a day, would be a blessing. (Participant 3) Some of the veterans involved with the program expressed other ways that the program has promoted personal growth. One participant explained Racing4Vets has not only pulled me off the couch, and got me out, ya know, to be active again, its kind of re-engaged me into a leadership traits, and , that Ive, wasnt really able to fully get to while I was active duty[I]ts allowed me, uh, to not only get reattached to leadership ability, physically, its got me, uh, to where Im more physically active, ya know, uh, losing weight is faster race times, so Ive dropped about 25lbs right now and Ive got another probably 20 to go. (Participant 2). EXPLORING THE IMPACT OF RACING4VETS 56 Another veteran suggested that Racing4Vets has increased his awareness. This veteran stated: [Y]ou do get to interact with a lot of guys who have a varied uh military past and you knida, ya know for me not ever being in a combat situation, you get a little better understanding of uh, ya know what theyre going through I get the realization that there are a lot of guys out there dealing with uh, pretty deep issues that that you know we can reach out and help them uh you know just provide some ya know normal fun activities for these guys to take part in. (Participant 1) Similar to the previous subtheme, one of the major themes of the interviews was the overall learning of Racing4Vets participants. Two of the participants mentioned that there are too many things in too many aspects or the program to accurately capture or list. Through other participant responses, three subthemes emerged including racing/mechanical, social, and personal learning. One veteran expressed, What have I learned? Ya know... theres just, ya know, th-the experience with working on go karts, ya know I didnt know much about go karts (Participant 1). Another participant explained that theres always something to learn and theres always, um, challenges that youre gonna have to figure out how to overcome...theres always something youve got to figure out how to improve upon or, uh, a-a problem ya gotta tackle (Participant 7). One participant discussed the learning in detail in the following statement: Mechanical learning that Ive learned, is phenomenal. With-with karting, its, when I first started, someone said, You have to move that seat up a quarter of an inch, thats all you probably need. And Im like, whatever, a quarter of an inch? Like thats gonna make a big difference? Im 270lbs, whatever; but its amazing, it, you shut up, be humble, and listen and you realize that that quarter inch does make a difference. Ya EXPLORING THE IMPACT OF RACING4VETS 57 know, add a seat strut here, adjust that camber this way, toe in this way, add a little more fuel for weight, move your weights around, uh, air the tire pressure up just right, move the axle in or out, I mean, people, I had no idea all this stuff was involved with karting. (Participant 2) Some participants also discussed the social learning they experience through involvement with Racing4Vets. Mostly they commented on increases social skills, comfort with public speaking, and trust. One participant noted, I definitely wasnt a people person, like I dont like large crowds, I think bad things can happen in large crowds, um, they could tell me now, get up on a stage and do a speech and Ill do the speech...Ive learned some people skills (Participant 3). Another veteran expressed improvement in social skills through the following statement: the thing that I dont like to do that th-the team has kinda, being part of the team has kinda forced me to do is to figure out how to ask people for-for stuff. So, I-I really dont like doing that; Id rather just do it myself, or, um, pay for it myself as opposed to trying to go out and try to raise money. Despise doing it, and Ive gotten maybe ever-so-slightly better at doing it, um, um, serving as the, ya know, volunteer, uh, treasurer for the chapter. Um, so, tryin to go out and find resources that-beyond my own means. (Participant 7) A few of the other veterans mentioned how Racing4Vets has increased their trust in others. One veteran stated, Ive learned, um, to a certain extent, to trust others, again. Um, its really--its hard for me to really, um, be comfortable around people in general. Um Its helped me get out more, be more sociable (Participant 5). Similarly, another veteran said, I was pretty much an introvert, really didnt, really, I dont trust a lot of people. I think thats really one of the big things its done, is that its opened me up again to trust people (Participant 2). EXPLORING THE IMPACT OF RACING4VETS 58 Another type of learning that participants reported was personal including increased awareness and personality traits. One participant expressed, What I learned is, ya know, is-is, uh, is-is increased awareness and problem solving, uh, taking ownership of uh, of uh, issues that pop up and finding solutions right away (Participant 2). Another stated, Ive learned that Im more compassionate than I thought I was (Participant 6). One other participant expressed personal learning through the following: I learned that, theres light in every dark situation; you just, have to want it, you have to look for it, and, um, ya know, I-I, I worry about the 22 a day. Ya know, how dark is it, ya know, Ive been there. Ive been there. And, um, it was a failed attempt, ya know, but, um,. That was a dark day. Um, its there if you want it; it really is. (Participant 3) Program involvement was the final major theme from the which captured how participants got involved, the cost, time commitment, teamwork, growth, and raceday. Most veterans got involved in the Racing4Vets outdoor program through word of mouth via Full Throttle or a friend or through the VA domiciliary that attends the indoor events. One veteran, who was introduced to Racing4Vets through Full Throttle, explained: I came across [Full Throttle] and started racing here at lunch time met Aaron Banfield, and, um, became good friends with him and, uh, he invited me out to Camden for, um, a free da-, free day of racing during that day, he had found out I was a veteran and hes like, Ive got a spot for you here. And he introduced me to the vets and, um, they had a, a three-kart team and I-it just went off from there. We, uh, we showed up 2 weeks later for the next race and... I won and it was my, uh, my first race, I, I won the race, um. So it got me kinda hook, line, and sinker. I dont know if they paid everyone off EXPLORING THE IMPACT OF RACING4VETS 59 to rope me in, but, uh, anyway, it was a good day and it was the start of all this. (Participant 6) Another veteran, who came to Racing4Vets through the VA domiciliary, stated: [T]hats how I got to find Racing4Vets...they [VA domiciliary] had a thing, sign up, hey were gonna go racing go karts on a Saturday morning and I said, Oh! What? Racing? So I came here to, uh, Full Throttle, and, uh, I raced a couple races and theyre like, Who are you? And we want you on our team. And I said, Hey, Ill be glad to come, whatre we doin? So, Ive been here ever since. (Participant 3) One aspect of the program that the participants frequently discussed was that the program is free to veterans and seems too good to be true. One veteran explains this benefit of the program in the following statement: [T]he great thing is its of no financial burden, which, anybody who pays their own way in racing knows that that can be substantial. Um, theres always a new tool or toy or somethin that everybodys gotta have. But, the great thing with this program is that the, through the fundraising and sponsorships, were able to provide that at no cost to the veterans, so ya know, its not added stress from that aspect, which can be a very stressful part of ones life, um, finances. So I think thats a-a huge benefit to veterans. (Participant 7) Another veteran reported that a friend had called him and said he could race for free and his response was, For free? Are you serious? Like, no! That, that cant--cause I know, cause racing can be expensive (Participant 2). One other participant commented, [I]f it sounds too good to be true, it usually is, well not in this case. This is, this is the truest it can be. So um, Im grateful; I really am (Participant 3). EXPLORING THE IMPACT OF RACING4VETS 60 Although there is not financial cost for the veterans, many discussed the time commitment within their interviews. One participant explained: [I]t just you know gobbles up a little bit of time because you, you do have to make somewhat of a commitment to it if you decide that you are going to, you know, participate in the outdoor program, its not close to where I live, um. You know, you have to be able to get yourself out there, and, uh, put in the time turning wrenches on some of these go karts...one thing about the outdoor program, is that its uh, theres no bumpers on this stuff, you crash it, you bend it up, you have to fix it an-and, its uh, you can log in a lot of time turning wrenches on these karts. (Participant 1) The time commitment is vast, even in the winter when there are not any outdoor races taking place and can take a toll of ones family life. One veteran described this as follows: [I]ts been a double-sided coin as far as my family life goes. Ive got two children, and being as involved as I am and trying to make Racing4Vets as successful as it is, it also does take a toll on the personal life. Um, my wife was like, yay, its off season. But I think Ive spent more time working on this stuff, working with this stuff and working with the people than during the season. At least during the seasons, its wake up on Saturday morning at 5am and gettin back at 10 o'clock at night and its just one day. And in the off-season, its a lot of preparation, so, it-its kinda flip flopped as far as the term offseason goes. So, tryin to balance what, um, my family life needs has been...somewhat of a challenge. But, ya-my-uh, at the same token, my-my wife, my family has complained about it a little bit, but then, also, they do see a-a change in my emotion and nature and stature in which I conduct myself, so it-its double sided; its, theres good and bad. (Participant 6) EXPLORING THE IMPACT OF RACING4VETS 61 However, another participant expresses how the hard work and time lead to a sense of accomplishment. This participant stated: [T]hats our number 22, uh, racing for 22 a day--Im proud of that--because that, thats more than just a race team, to me. Thats hours and hours, weeks, and months of work. Ya know, driving late at night, helping somebody out, or, ya know, getting parts or, ya know, talking on the phone about what are we gonna do next, and what can we do to be better, what can we do to be faster?... [P]ainting a car is, ya know, 90% body work, 10% painting it. Um, the body work that goes on behind the scenes Monday-Friday, months before raceday even starts, um, ya know, all that work you put into, for every single race during the weekend, it all pays off. (Participant 2) Some participants, who do not have service-connected conditions, discussed how the mission of Racing4Vets requires a team of veteran to help those who need the most help. One participant stated: I told them flat out, I said, well Im not combat-related and they said, well thats okay, youre a vet and you signed your name on the check, you signed the blank check for your life on the line and, uh, to serve your country and thats, uh, thats also what were about...its, its a full encompassing veteran group. Thats our focus is PTSD and combat injuries, but it takes a village to help. (Participant 2). This participant, as well as others, noted how Racing4Vets is a team effort as far as utilization of skills. One comment was, [I]n order to function, these things need to be in place, ya know, uh the public speaking, the-the marketing, the parts acquisition, um, ya kn-, the-the logistics, the-the sustaining of processes that are in place (Participant 2). Another veteran expressed: EXPLORING THE IMPACT OF RACING4VETS 62 [I]ts got a lot of different aspects, you can-theres some people in our group that a-are good at, uh, ya know, they like t-the fundraising aspect of it and uh going to the fundraisers and..an, they dont necessarily like to race but they still like other aspects of the program, so eh-eh-as a group... I-it gives a lot of people different opportunities to use their strengths and, uh, ya know contribute to the group so, ya know, if you-you think you have something out there that, ya know-if youre thinking about getting into the program and maybe youre not the fastest go kart racer out there in the world, ya know, we dont really care, um, ya know, you might be uh, uh, super social guy and were out at a fundraiser, you-uh-you excel there, so its just kinda a group effort. (Participant 1) Most veterans involved in the interviews discussed how much the program has grown. One veteran said, we were able to take a team that, um, was kind of struggling, and through good networking and the integration of, uh, different veterans out of different aspects of life and different problems, we have built a-a strong team (Participant 6). Another veteran commented: [W]eve got some key people who genuinely want to see it succeed and, um, provide what it promised to provide and I beli-, I absolutely believe, we are taking the steps it takes to get, uh, get a solid foundation with this racing team, here in Cincinnati.... And I think, um, it-its-its gonna be always evolving, ya know, um, so as long as were improving, then Im happy. If its small steps, its still a step; it doesnt have to be big steps. You gotta make small steps consistent to win a race. (Participant 2) Similarly, another participant voiced, [A]s long as were makin...a difference on one person at a time, its really what its all about, but, uh, wed love to see the program continue to grow, n, we just gotta figure out how to, how to get the right, the right people in and get em, get em hooked (Participant 7). One other veteran noted, Being a part, and seeing it grow from what it EXPLORING THE IMPACT OF RACING4VETS 63 was originally, when I first started, like 2 years ago, to what it is now, um regardless weve only gotten, um, team-wise, weve only gotten so much larger, I feel like, um, our reach is a lot further (Participant 5). Another large aspect of the program discussed by the veterans was raceday and the feeling of racing. Participants discussed aspects of raceday both on and off the track. One veteran expressed: I guess the thing that makes me the happiest is ya know, when race day comes, everybodys there, theyre happy, um and especially, uh, not only them, but the-the participants of the racing community see us there; that makes me happy. Uh, the gold star families, that show up. We have, uh, honor and remember, were very blessed andand happy that honor and remember has allowed us to be, um, ya know, able to recognize, the-uh, the gold star families, uh, those that lost their, their sons or daughters in combat. Uh, ya-we, we recognized them for every race. We, we recognize the families, um, we have a whole day for them racing at the track, we have-we put a picture of their son or daughter on the kart with us; theyre racing with us...all the way to the finish Ya know, and to see them come out, and be happy, knowing what theyve lost. (Participant 2) Another of the veterans suggested a similar idea with the off-track aspect of raceday. This veteran stated: Number one, you would think, ya think number one would be the seat time, and its a close second, but, honest to God, gettin to the track, watching the sun come up, opening that door and saying this is raceday. Y-you smell the fuel, and the rubber and the grease and youre just like, youre unloading all that stuff. The best part i-i-, yeah, gettin to the EXPLORING THE IMPACT OF RACING4VETS 64 track an-and startin, startin that engine; just the engine of the day, the engine of the team--thats the best part. (Participant 6) Other participants mentioned the psychological aspect of racing. When asked what driving the felt like, the participant stated, Free. Mmm--its hard to get that. Just free from thoughts, um, cares, worries (Participant 5). Another veteran expressed, Youre allowed to come out here and just let your soul out onto the track. Youre allowed to, uh, put everything that you got, yaya know (Participant 3). Yet another participant reported: Its awesome, cause, you forget about everything, I mean, you are in tune with the track, the drivers around you, and for that 8 minutes, 12 minutes of, of 65 miles per hour going around the track and making a turn without breaking...you get your body and mind in one, you just totally forget about everything The smells of the fuel and the-the sound of the tires and the, the engines, um, all around you--you can hear if someones coming up or you can, or the feeling of passing someone, fighting for that spot...its cool, ya know, I mean its... I like it. (Participant 2) One other participant commented on a similar aspect of racing the kart in the following statement: [I]ts so clich to say, youre in control of whats out of control, but its kinda true, and, ya know. Being able to go out on the track and just stick your, you know, were basically running, ya know, almost open wheels and, to be driving that close on the edge with other people, ya know, it-theres a certain amount of trust, I guess, that you have to have-theres a love-hate relationship with your opponents, ya know, do I stick it in there and go for the spot or do I leave it alone and just have a good day and get to the end of the EXPLORING THE IMPACT OF RACING4VETS 65 race, uh, it, it-its adrenaline...it-its--racings awesome. I dont know how else to say that. (Participant 6) One veteran discussed a slightly different emotion related to karting. This veteran explained: Its a little bit scary. Um indoors, uh its not scary, ya know, you have bumpers on the go karts, its uh, ya know Ive got a lot of seat time in those so I really don't have any, uh, butterflies or anything like that but when you get out on the, um, the outdoor track, especially when youre first starting out, it's a little bit faster, you're racing against a lot of people that have a lot of laps out there, and uh youre not gonna be at the top of the, uh you know, youre not gonna be the cream of the crop initially out there. So..that's always a bit nervous. (Participant 1) Finally, two of the participants commented on the psychical aspects of raceday and driving the kart. The first stated, It-its very demanding, it-its a demanding sport and its not just for the 12, 15 minutes youre out on the track, its um, its-its all the leg work in between, too. So, it, uh, it-its a lot of physical activity in a-, during a race day (Participant 6). The other veteran expressed the physicality of the racing in more detail. This veteran explained: I tell you what, youre, you are fighting that, that kart with, ya know, three plus Gs on a turn. Uh, and, ya know, youre crouched down there real tight and its all forearms andand legs and-and, uh, ya know, doing all that stuff, man, can, can, for 8, 12 minutes solid, non-stop, no one, ya know, like if youre working out and you get tired, hey but the barbell down, or ya just slow down on the treadmill; No--theres a green flag, and youre gonna go all the way until it turns checkered; you have no choice and youre fightin it. We have some laps, or some races, that are like, ya know, 25 laps and, ya know, that, EXPLORING THE IMPACT OF RACING4VETS 66 thats a 15 plus minute race, or whatever, going full till, uh, it gets you in shape, you burn a lot of calories. (Participant 2) Cincinnati Indoor Program Participants. The demographics of the Cincinnati indoor program is ever-changing due to the flow of the patients at the VA domiciliary. The month of March, when data was collected, was held at the Florence, KY location of Full Throttle Indoor Karting. There were 12 participants total and 7 participants completed the survey. Based on personal observation, this was a small turn out with a lack of female participants compared to other months. The VA was also the only organization to participate this month. All participants were male with a variety of military experience. There was a larger number of participants who served in the United States Army than the other branches. Participants had 4-22 years of service with an average of approximately 10 years. Participants are 1-42 years post service, with an average of 19 years. The primary diagnoses were PTSD, depression, and substance abuse with other diagnoses including anxiety and TBI. The majority of the participants are from coastal states with only two local participants from Ohio or Kentucky. Physical activity enjoyment scale. The average score for the veterans at the Cincinnati indoor event in March on the PACES was a 6.35 on a seven-point scale, with a higher score indicating greater enjoyment. All participants scored the items I feel interested, Its a lot of fun, and It makes me happy as a 7.00. The lowest average score was for the item Its very pleasant with a score of 5.28. Qualitative questions. Five themes emerged from the short answer questions on the survey including Mental Health, Meaningful Activity, Social Interaction, Physical Activity, and Thankful. In relation to mental health participants used words and phrases such as super EXPLORING THE IMPACT OF RACING4VETS 67 pumped, lots of fun, adrenaline, relieving, much needed experience, feel good, and happy (Participant 1, 3, 5, & 6). One participant expressed that the indoor event was a meaningful activity because it got him out of the house (Participant 7). Several participants mentioned the social aspect through words and phrases such as being around new veterans, team, bonding, got us close, and easy socializing (Participant 1, 3, 5, 6, & 7). The participants responded to the physicality of racing by stating that it was a workout or that it hurt (Participant 3, 5, & 6). Finally, two participants reported that they were thankful for the opportunity (Participant 1 & 7). Tampa Chapter Participants. Eleven participants completed the Tampa survey. Participants were males between the ages of 25 and 69 years old with an average of 37 years old. Half of participants have full time employment outside of Racing4Vets, with 30% of participant unemployed. Of the participants, 70% are married and 60% do not have children. The participants have various military experiences. The majority of participants have served in the United States Army or the United States Air Force; other participants served in the United States Marine Corps, the United States Navy, and the United States Army Reserve. Approximately 70% of the participants served 6 years or more as active duty, with other participants serving for 3-4 years. Of those who the completed part time service in the Reserves or National Guard, most served 1-3 years. The majority of participants were deployed for 1 year with 1-2 deployments. From the date of data collection, participants average 12 years post service. Of those who reported service-related disorders, the most common were depression and physical impairments. Other conditions noted PTSD, TBI, anxiety, and substance use disorder. Four participants reported their VA disability rating for an average of 80%. Participants spend an average of approximately 9 hours per month EXPLORING THE IMPACT OF RACING4VETS 68 with the program. The majority of participants have 2-3 years of involvement with the Racing4Vets program, with a few participants having over 3 years of involvement. Military to civilian questionnaire. The average combined score on the M2C-Q for the veterans in the Tampa program was 1.42 on a zero to four scale. According to the M2C-Q scale, this score indicates that the veterans in this group had between a little and some difficulty overall with their transition to civilian life. On average, the veterans in this group scored the highest, indicating more difficulty, on Keeping up friendships with people who have no military experience (2.0) and Confiding or sharing personal thoughts and feelings (2.0); both indicate participants reported having some (2.0) difficulty. Posttraumatic growth inventory. The veterans in the Tampa program averaged a score of 2.67 on a scale of zero to five. This score indicates that the veterans self-reported small to moderate growth overall. According to the PTGI scale, this group of veterans reported small (2.0) to moderate (3.0) growth in four of the five categories including Appreciation of Life (2.96), Relating to Others (2.79), New Possibilities (2.78), and Personal Strength (2.60). Perceived Competence Scales. The veterans scored the highest, indicating the most competence, on the Healing, Career, and Racing scales with an average score of 5.63 on a scale of zero to seven. This result indicated that participants slightly (5.00) to moderately (6.00) agreed with having the competence to maintain positive well-being, work in a motorsportsrelated field, and compete in amateur motorsports. The average self-reported competence of the veterans on the Health (5.60) and Community (5.32) scales indicated that participants slightly (5.00) to moderately agree with having competence in maintaining a healthy lifestyle and connecting with others. EXPLORING THE IMPACT OF RACING4VETS 69 Qualitative survey questions. Six themes emerged from the short answer questions on the Tampa survey including Difficulty with Reintegration, Supportive Team, Interaction and Helping Veterans, Meaningful Activity, Community, and Program Growth. Two participants mentioned specific difficulties related to reintegration. One stated, I had issues finding a route as bad as it sounds. I had a what now kinda feeling. The other participant expressed difficulty related to employment. This participant reported, No civilian jobs back home...aligned with the job I had in the military. Several comments were made in relation to a team and teamwork. Some participants described that there are various roles that make up the team including mechanics/maintenance workers, drivers, teachers, mentors, and marketing personnel. One participant indicated that as a team, there is something for everyone to do. Other participants expressed the importance of being a part of a team and feeling...able to contribute to a cause with [ones] skills. Another participant stated that being a part of a caring team and an important mission makes it feel like the same military family [he/she was] used to. Another theme is the interacting with and helping other veterans. Some participants mentioned this theme through phrases such as getting to work with vets side by side, creat[ing] new friends that care and mentor, being able to come together with people that have been where you were and are able to confide in each other, and being in a safe environment with other veterans that understand [the] transition and can help them through it. Some of the participants indicated that Racing4Vets provides a fun, meaningful activity. One participant explained, This is a great hobby to get into it helps you find purpose for something and to be the best at something other than what you think you could. EXPLORING THE IMPACT OF RACING4VETS 70 Another common theme was the connection to the community. One participant stated, Racing4Vets is a positive place...where you can better integrate with local community. Another participant reported that the program has great connections in the local community and motorsports industry. Growth of the program was also a common theme in the surveys. One participant stated, We[ve] come so far thanks to the community. Another participant expressed a desire for continued growth through the statement, I hope more sponsors get on board so Racing4Vets can become a national brand and help more veterans in more states. In agreement with the previous quote, another participant expressed, Id love to see the team get bigger in all aspects. Discussion The purpose of this DCE project was to complete a program evaluation based on the goals of the organization as well as to explore and evaluate the benefits of the Racing4Vets programs on the well-being, quality of life, PTG, and occupational performance of the participants. The main mission of the Racing4Vets organization is to get veterans involved in motorsports careers and amateur racing through the three pillars of community, healing, and career. Through these pillars, Racing4Vets strives to make a difference in the lives of veterans by providing opportunities to connect with veteran and civilian communities, facilitating increased mental and physical health through racing, and increasing skill sets and connections for potential career opportunities. According to the results of the perceived competence scales, the Cincinnati outdoor program participants slightly to moderately agree that they have overall competence in the core goals of the Racing4Vets program. Participants reported the highest competence in the development of mechanical skills to work on the go karts, closely followed by EXPLORING THE IMPACT OF RACING4VETS 71 their confidence in connecting with others. This indicates that these are the strongest factors that have been promoted through the Cincinnati program. The lowest competence was in healthy, specifically relating to maintaining a healthy lifestyle; many participants also denied a change in this aspect of their lives during the interviews. This suggests that the Cincinnati program may need to improve upon this area of the program if it remains a goal of the program. According to the results of the perceived competence scales, the Tampa program participants also slightly to moderately agree that they have overall competence in the core goals of the Racing4Vets program. Participants reported nearly equal competence in healing, career, racing, and health, with community not very much lower, suggesting that the Tampa chapter has a good distribution of these five key aspects. However the participants reported only slight confidence in their abilities across all competency areas. This suggests that the Tampa program may need to improve upon the depth of each of the areas. Participants of Racing4Vets reported posttraumatic growth and increased opportunities, mental health, social interaction, and participation in meaningful activity that may facilitate wellbeing, quality of life, and occupational performance. Overall, the veterans involved with Racing4Vets reported small to moderate post traumatic growth, with the most growth in appreciation of life. Racing4Vets may have contributed to this growth. Overall, the veterans had little to some difficulty with their transition to civilian life according to the results of the M2C-Q, with some of the most difficult aspects being sharing thoughts and emotions, making good use of free time, and maintaining friendships with individuals without military experience. Through the Racing4Vets program, these individuals were exposed to a supportive environment, given opportunities to participate in meaningful activities, and connected to the community that may have eased these difficulties. Participants often commented on the connection they had with EXPLORING THE IMPACT OF RACING4VETS 72 other team members and their willingness to discuss openly and that Racing4Vets gave them something to look forward to. The connection to the racing community allowed the veterans to create friendships outside of their comrades. These benefits along with the happiness the participants reported as a result of Racing4Vets may have facilitated the growth in appreciation of life. Racing4Vets may enhance occupational performance of participants. Within the Canadian Model of Occupational Performance, a disruption of the person, environment, or occupation can cause occupational dysfunction. According to the concept of PTG, an individual who goes through a traumatic event, as one may experience during military service, has a disruption of their core beliefs (Tedeschi & Calhoun, 2004). This disruption is likely to affect the human spirit, the essence of ones identity or an individual's motivation, well-being, and life meaning and satisfaction. This is the core concept at the center of the CMOP. Upon return to civilian life, veterans likely experience a change in all other areas of the CMOP as well. Veterans are likely to have changes in physical or mental health, the tasks required in daily life, and the environment. The veterans involved in Racing4Vets rated the concept of appreciation of life as the area of most growth; this could also be described as the human spirit within the Canadian Model of Occupational Performance. Racing4Vets also provides support in other areas of the CMOP including improved mental health, participation in leisure, and a safe, unconditional environment. After having the drastic change from military life to civilian life, participation in Racing4Vets that restores some of the key aspects of the person, environment, and occupation may improve the overall occupational performance and therefore, reintegration of veterans. EXPLORING THE IMPACT OF RACING4VETS 73 Plan for Sustainability After completion of the project, continued quality improvement will be facilitated through access to documents, a promotional video, and member development. One of the key concepts behind Racing4Vets is to be completely self-sustained by the veterans; with this in mind, sustainability of this project will be accomplished by arming the veterans with resources to increase the effectiveness of the team members abilities to advocate for and grow the Racing4Vets program. The regional directors and veteran leaders of the Racing4Vets were presented with the results of this project as well as all of the documents and resources created during the process. Previously, leadership of the team was not collecting or clearly measuring program outcomes. Findings from this program evaluation may also be used to improve the Racing4Vets program in the areas identified as less successful in achieving program goals. The implementation of the evidence-based program evaluation allowed the leaders to understand the importance of measuring the outcomes and benefits of their program. Once the desired changes have been incorporated into the program, the leadership team has access to the instruments utilized in the evaluation for use in the future. Findings from this project will also serve to provide Racing4Vets with the information needed to update their mission and goals to better reflect organizational efforts. The relevant literature collected to form the program evaluation along with the outcomes of the program evaluation has equipped the members with enhanced vocabulary and phrasing for describing and promoting program outcomes to more scholarly or medically-based potential sponsors. A list of local veteran-owned businesses and local veteran organizations was also provided to enable Racing4Vets leadership to better advocate for their program in order to create more support for the program and a stronger connection to the community. EXPLORING THE IMPACT OF RACING4VETS 74 A promotional video was created to highlight the impact of the program on veteran wellbeing, quality of life, posttraumatic growth, and occupational performance. The video will serve as a program resource to share with other veterans, potential sponsors, and the community. The video has been posted online at https://youtu.be/d5Q3UI5Bp7s. Needs of Society Many veterans struggle with reintegration into civilian life and some are unaware of the resources available to them. Seeking professional help can be intimidating and often carries stigma, however, Racing4Vets offers a safe, unconditional environment where veterans can seek social support, meaningful activity, and increased mental health. Racing4Vets is a small, nonprofit organization that does not have room in the budget for promotional use. Utilizing this capstone project to experience and evaluate the Racing4Vets program and to create a video utilizing the powerful stories of the veterans who are currently involved will allow for the promotion of the program to get the word out to other veterans in the community. As more veterans become aware and become involved in this program, the local veteran community will have a resource to fight against some of the difficulties of reintegration through social interaction, connection to other military members, meaningful activity, and increased mental health. Section VI - Overall Learning Advocacy and Communication Throughout the process of this capstone project, I utilized effective communication and advocacy skills. At the beginning of the project process, I utilized written and oral communication to advocate for my role in program evaluation when discussing with the regional director of Racing4Vets in Cincinnati and to advocate for the role of occupational therapy within EXPLORING THE IMPACT OF RACING4VETS 75 the Racing4Vets program to the Doctoral Capstone Coordinator. The majority of communication throughout this project was done via e-mail, text messaging, or phone call due to the majority of participants and leaders being off site on a daily basis. I adapted methods of communication to fit what was most effective for each person. I have gotten the opportunity to communicate in person with a few of the veterans family members and express the purpose of the project and the benefits of the Racing4Vets program. Through attendance at one show/convention, I was also able to advocate for the Racing4Vets program by communicating the mission and impact of the Racing4Vets program to veterans and the general public in attendance. Demonstration of Leadership The main leadership skills utilized to promote effective implementation of this doctoral capstone project included communication, organization, and problem solving. Leadership qualities such as determination, passion, flexibility, and collaboration were also important to promote effective implementation. The utilization of these leadership skills and qualities began in the planning phase of the project. I took charge of my project and led on with a strong vision and passion to combine occupational therapy and racing. There were many difficulties, including rejection from other organizations, however through determination, persistence, and flexibility I was able to locate, contact, and organize my doctoral capstone project to do just that with the Racing4Vets program. The last-minute changes to my project required me to be flexible and to communicate effectively and efficiently. Ambiguity going into the project required problem solving and collaboration to determine and lead the project in a specific direction. Upon arrival to my site I utilized problem-solving, organization, and planning to modify my environment and routine as needed in order to get tasks completed. The veterans work full-time EXPLORING THE IMPACT OF RACING4VETS 76 outside of Racing4Vets and meet late at night in the shop, so I modified my schedule to fit theirs. When meeting with the veterans, I further utilized my communication, planning, and organization skills as I scheduled interviews around personal and team schedules; I managed communication through multiple mediums due to the complicated schedules and situations of the veterans. One of the largest aspects that required leadership skills was collaboration with individuals with differing backgrounds and experiences. Many veterans in the Racing4Vets team reported having difficulty trusting others upon their return from service. One veteran stated, to win it takes a leader...one that people respect--one that people trust (Participant 2, personal communication). In this environment and with the veteran population, I had to gain their trust and respect by showing them I was willing to work and get dirty working on karts in the shop. In this way, I demonstrated leadership through working alongside the team rather than strictly overseeing the team. My knowledge and experiences related to occupational therapy, program development, quality improvement, research, and racing allowed me to provide input and suggestions to improve upon existing methods or to create new processes in collaboration with other team members. I used my knowledge, experience, and problem-solving skills to determine the needs of the organization, analyze the program, and design a solution through an evidence-based program evaluation for the team to utilize for funding and promotional purposes to lead the program to a more evidence-based approach. Without the application of my leadership skills as discussed above, this project may not have been as effectively implemented. EXPLORING THE IMPACT OF RACING4VETS 77 References Ahern, J., Worthen, M., Masters, J., Lippman, S. A., Ozer, E. J., & Moos, R. (2015). The challenges of Afghanistan and Iraq veterans transition from military to civilian life and approaches to reconnection. PloS One, 10(7), e0128599. 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Spinal injuries in United States military personnel deployed to Iraq and Afghanistan: An epidemiological investigation involving 7877 combat casualties from 2005 to 2009. Spine, 38(20), 17701778. doi: 10.1097/BRS.0b013e31829ef226 Seal, K. H., Cohen, G., Waldrop, A., Cohen, B. E., Maguen, S., & Ren, L. (2011). Substance use disorders in Iraq and Afghanistan veterans in VA healthcare, 20012010: Implications for screening, diagnosis and treatment. Drug and Alcohol Dependence, 116(1-3), 93-101. doi:10.1016/j.drugalcdep.2010.11.027 Seal, K. H., Maguen, S., Cohen, B., Gima, K. S., Metzler, T. J., Ren, L., ... & Marmar, C. R. (2010). VA mental health services utilization in Iraq and Afghanistan veterans in the first year of receiving new mental health diagnoses. Journal of Traumatic Stress, 23(1), 5-16. Speicher, S. M., Walter, K. H., & Chard, K. M. (2014). Interdisciplinary residential treatment of posttraumatic stress disorder and traumatic brain injury: Effects on symptom severity and occupational performance and satisfaction. American Journal of Occupational Therapy, 68(4), 412-421. Sreenivasan, S., Garrick, T., McGuire, J., Smee, D. E., Dow, D., & Woehl, D. (2013). Critical concerns in Iraq/Afghanistan war veteran-forensic interface: Combat-related postdeployment criminal violence. Journal of the American Academy of Psychiatry and the Law Online, 41(2), 263-273. Retrieved from EXPLORING THE IMPACT OF RACING4VETS 89 https://www.researchgate.net/profile/Daniel_Smee/publication/239077253_Critical_conc erns_in_IraqAfghanistan_war_veteran-forensic_interface_Combatrelated_postdeployment_criminal_violence/links/56263f9e08aeedae57dbcfba.pdf Stacy, M. A., Stefanovics, E., & Rosenheck, R. (2017). Reasons for job loss among homeless veterans in supported employment. American Journal of Psychiatric Rehabilitation, 20(1), 16-33. doi: 10.1080/15487768.2016.1267049 Taylor, B. C., Hagel, E. M., Carlson, K. F., Cifu, D. X., Cutting, A., Bidelspach, D. E., & Sayer, N. A. (2012). Prevalence and costs of co-occurring traumatic brain injury with and without psychiatric disturbance and pain among Afghanistan and Iraq War Veteran VA users. Medical care, 342-346. Tedeschi, R. G., & Calhoun, L. G. (1996). The Posttraumatic Growth Inventory: Measuring the positive legacy of trauma. Journal of Traumatic Stress, 9(3), 455-471. Tedeschi, R. G., & Calhoun, L. G. (2004). Posttraumatic growth: Conceptual foundations and empirical evidence. Psychological inquiry, 15(1), 1-18. Tomar, N. & Stoffel, V. (2014). Examining the lived experience and factors influencing education of two student veterans using photovoice methodology. American Journal of Occupational Therapy, 68(4), 430-438. doi:10.5014/ajot.2014.011163 Tsai, J & Rosencheck, R. (2015). Risk factors for homelessness among U.S. veterans. Epidemiologic Reviews, 37, pp. 177195. https://doi.org/10.1093/epirev/mxu004 Twamley, E. W., Hays, C. C., Van Patten, R., Seewald, P. M., Orff, H. J., Depp, C. A., ... & Jak, A. J. (2019). Neurocognition, psychiatric symptoms, and lifetime homelessness among veterans with a history of traumatic brain injury. Psychiatry Research, 271, 167-170. https://doi.org/10.1016/j.psychres.2018.11.049 EXPLORING THE IMPACT OF RACING4VETS 90 United States Department of Housing and Urban Development. (2015). Homeless veterans in the United States. Retrieved from https://www.hudexchange.info/onecpd/assets/File/2015AHAR-Part-2-Section-5.pdf United States Department of Veterans Affairs. (2016, July 7). VA conducts nations largest analysis of veteran suicide. Retrieved from http://www.va.gov/opa/pressrel/includes/viewPDF.cfm?id52801 Vercillo, T. (2014). Leisure as a facilitator of posttraumatic growth in individuals living with cancer. Retrieved from http://dr.library.brocku.ca/bitstream/handle/10464/6055/Brock_Vercillo_Tabitha_2014.p df?sequence=1&isAllowed=y Veterans Health Administration. (2015a). Analysis of VA health care utilization among Operation Enduring Freedom (OEF), Operation Iraqi Freedom (OIF), and Operation New Dawn (OND) Veterans. Retrieved from https://www.publichealth.va.gov/docs/epidemiology/healthcare-utilization-report-fy2015qtr1.pdf Veterans Health Administration. (2015b). Occupational therapy fact sheet: Mental health. Retrieved from https://www.rehab.va.gov/PROSTHETICS/factsheet/OT-Mental-HealthFactSheet.pdf Veterans Health Administration. (2018). Occupational therapy fact sheet. Retrieved from https://www.rehab.va.gov/PROSTHETICS/factsheet/OT-FactSheet.pdf Vogt, D. (2011). Mental health-related beliefs as a barrier to service use for military personnel and veterans: A review. Psychiatric services, 62(2), 135-142. EXPLORING THE IMPACT OF RACING4VETS 91 Walker, B. A., Bramstedt, J., Cleary, K. J., Greer, S. T., Teague, D. A. (2018) Reintegration and transition following active duty: Identifying the challenges for veterans returning from deployment in Afghanistan and Iraq. Unpublished manuscript, School of Occupational Therapy, University of Indianapolis, Indianapolis, Indiana. Walker, B. A., Goard, N., Herd, A., Price, B., Teffera, W., & Tunstall, T. (n.d.) Practice implications for occupational therapy with post-9/11 veterans with PTSD. Unpublished manuscript, School of Occupational Therapy, University of Indianapolis, Indianapolis, Indiana. Walter Reed Army Institute of Research. (2005). Battlemind training II: Continuing the transition home. Retrieved from http://www.networkofcare.org/library/PostDeployment%20Battlemind%20Training%20for%20Soldiers2.pdf Warner, C. H., Appenzeller, G. N., Grieger, T., Belenkiy, S., Breitbach, J., Parker, J., ... & Hoge, C. (2011). Importance of anonymity to encourage honest reporting in mental health screening after combat deployment. Archives of General Psychiatry, 68(10), 1065-1071. Williams, G. C., & Deci, E. L. (1996). Internalization of biopsychosocial values by medical students: A test of self-determination theory. Journal of Personality and Social Psychology, 70(4), 767. Williams, G. C., Freedman, Z. R., & Deci, E. L. (1998). Supporting autonomy to motivate patients with diabetes for glucose control. Diabetes Care, 21(10), 1644-1651. EXPLORING THE IMPACT OF RACING4VETS 92 Appendix A Human Research Protections Program (HRPP) 1400 East Hanna Avenue Health Pavilion Indianapolis, IN 46227 317/781-5774 800/232-8634 x5774 hrpp@uindy.edu Beth Ann Walker, Ph.D. School of Occupational Therapy University of Indianapolis 1400 E. Hanna Avenue Indianapolis, IN 46227 January 8, 2019 Re: The Impact of Racing4Vets on Well-being of Veterans Dear Dr. Walker, Thank you for submitting a Human Subjects Research Determination application to the Human Research Protections Program (HRPP). The HRPP determined that the project you described in your application does not meet the definition of human subjects research as set forth by the federal regulations, 45 CFR 46.102. Because your project is not human subjects research, it does not require HRPP review and approval. Nevertheless, if you modify your project such that research activities more closely correspond to activities eligible for HRPP review and approval, you must submit a new HRPP Review Application though IRBManager. Please retain this letter in your file for this project, as this letter serves as formal notification of HRPP action. I invite you to contact the Office of HRPP (hrpp@uindy.edu) with questions about this letter or other HRPP matters. Sincerely, Elizabeth S. Moore, Ph.D. Faculty Co-Chair, HRPP and IRB Assistant Professor, Department of Interprofessional Health and Aging Studies College of Health Sciences University of Indianapolis EXPLORING THE IMPACT OF RACING4VETS 93 Appendix B Needs Assessment Interview Guide Do you know the approximate demographics of your typical participants? Typical number of participants Sex Branch of military Years post-service/deployment Type of disability Disability status (extend of disability according to VA) Employed, full or part time Married or children Average time spent with Racing4Vets Involvement in other organizations Prior knowledge of racing/mechanics Length of involvement in Racing4Vets How they heard about or got involved in Racing4Vets How are you fundraising? How are you promoting the program? How are you determining the benefits of the program? How do you know/measure the success of meeting your mission/goals? How do you think active duty impacted the well-being of the veterans in the program? How do you think active duty impacted the transition to civilian life for the vets in the program? What impact do you think active duty has on the vets potential for posttraumatic growth? How do you think providing the social interaction may help the vets? How do you think possible psychological benefits of racing may help the vets? How do you feel the engagement in meaningful activity might help the vets? EXPLORING THE IMPACT OF RACING4VETS Appendix C Qualtrics Survey 94 EXPLORING THE IMPACT OF RACING4VETS 95 EXPLORING THE IMPACT OF RACING4VETS 96 EXPLORING THE IMPACT OF RACING4VETS 97 EXPLORING THE IMPACT OF RACING4VETS 98 EXPLORING THE IMPACT OF RACING4VETS 99 EXPLORING THE IMPACT OF RACING4VETS 100 EXPLORING THE IMPACT OF RACING4VETS 101 EXPLORING THE IMPACT OF RACING4VETS 102 EXPLORING THE IMPACT OF RACING4VETS 103 EXPLORING THE IMPACT OF RACING4VETS 104 EXPLORING THE IMPACT OF RACING4VETS 105 EXPLORING THE IMPACT OF RACING4VETS 106 EXPLORING THE IMPACT OF RACING4VETS 107 EXPLORING THE IMPACT OF RACING4VETS 108 EXPLORING THE IMPACT OF RACING4VETS 109 EXPLORING THE IMPACT OF RACING4VETS 110 Appendix D Cincinnati Outdoor Interview Guide Introductory Statement: Please know that the purpose of these questions is to get a better understanding of you, your experiences, and the Racing4Vets programs. You are not required to answer all of the questions I ask, just discuss what you feel comfortable sharing. Describe your military background: What was your military experience? Describe how your military experience has impacted your well- being or your overall health and happiness? Describe your personal experience with combat-related physical or psychological conditions, disorders, or disabilities. What did you find the most challenging in your transition from active duty back to civilian life? Describe the challenges you faced as you transitioned from active duty to life as a civilian. How did you become involved with Racing4Vets? What has Racing4Vets meant to you? What have you learned from Racing4Vets? What skills have you learned or further developed through participation in Racing4Vets? What skills that you learned or developed through Racing4Vets has assisted you with a career? How have you or could you apply this knowledge or skill to a career? Describe the impact Racing4Vets has had on your life? How has Racing4Vets influenced your outlook on life? How has Racing4Vets influenced your social life? How has Racing4Vets influenced your involvement in your community? EXPLORING THE IMPACT OF RACING4VETS 111 How has Racing4Vets affected your overall health and happiness? What have you learned about yourself through your engagement in Racing4Vets? What life lessons have you learned through participation in Racing4Vets? How do you feel you have grown as a person through involvement with Racing4Vets? What influence has participation in Racing4Vets had on your lifestyle in relation to health and wellness? Describe the overall environment or feeling of the Racing4Vets program? How does interaction with other members on the team make you feel? How does the act of racing a kart make you feel? Physically? Mentally? Emotionally? In your opinion, what are the benefits of participating in the Racing4Vets program? What do you look forward to the most when participating in Racing4Vets? What motivates you to continue participating in Racing4Vets? How does Racing4Vets compare/contrast to other veteran programs you have experienced? How have you seen Racing4Vets impact others? What would you like other veterans to know about the Racing4Vets program? Why should others get involved in Racing4Vets? If you could change anything about the Racing4Vets program what would it be? EXPLORING THE IMPACT OF RACING4VETS 112 Appendix E Cincinnati Indoor Survey Demographics Number of years post service:_______________ Branch of the Military:__________________ Number of years of service:______________ State in which you live:__________________ Sex (circle): Male Female Prefer not to answer Have you been diagnosed with any of the following during or post service: (circle all that apply) Post Traumatic Stress Disorder (PTSD) Amputation Depression Traumatic Brain Injury (TBI) Anxiety Substance Use Disorder Other: Activity Enjoyment Scale Please rate how you feel at the moment about the karting portion of this experience. I enjoy it 2 3 4 5 6 7 I hate it I feel bored 2 3 4 5 6 7 I feel interested I dislike it 2 3 4 5 6 7 I like it I find it pleasurable 2 3 4 5 6 7 I find it unpleasurable I am very absorbed in this activity 2 3 4 5 6 7 It's no fun at all 2 3 4 5 6 7 It's a lot of fun I find it energizing 2 3 4 5 6 7 I find it tiring I am not at all absorbed in this activity EXPLORING THE IMPACT OF RACING4VETS 113 It makes me depressed 2 3 4 5 6 7 It makes me happy It's very pleasant 2 3 4 5 6 7 It's very unpleasant I feel good physically while doing it 2 3 4 5 6 7 I feel bad physically while doing it I feel good psychologically while doing it 2 3 4 5 6 7 It's very invigorating 2 3 4 5 6 7 It's not at all invigorating I am very frustrated by it 2 3 4 5 6 7 I am not at all frustrated by it It's very gratifying 2 3 4 5 6 7 It's not at all gratifying It's very exhilarating 2 3 4 5 6 7 It's not at all exhilarating It's not at all stimulating 2 3 4 5 6 7 It's very stimulating It gives me a strong sense of 2 accomplishment 3 4 5 6 7 It's very refreshing 2 3 4 5 6 7 It's not at all refreshing I felt as though I would rather be doing 2 something else 3 4 5 6 7 I would definitely come again 2 3 4 5 6 7 I definitely would not come again I would not recommend it to a friend 2 3 4 5 6 7 I would recommend it to a friend I gained something from this activity 2 3 4 5 6 I did not gain anything from this 7 activity Open-Ended Questions How was this activity meaningful to you? How do you feel karting impacted you psychologically? I feel bad psychologically while doing it It does not give me any sense of accomplishment at all I felt as though there was nothing else I would rather be doing EXPLORING THE IMPACT OF RACING4VETS How do you feel karting impacted you physically? What other benefits did you experience from this event? Comments: 114  ...

... Running Head: INTIMACY WITH CANCER 1 Intimacy with Cancer: Program Development and Evaluation Addressing Sexual Health and Intimacy with Cancer Survivors Addie L. Jacobs 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: Katie M. Polo, DHS, OTR, CLT-LANA INTIMACY WITH CANCER 2 A Capstone Project Entitled Intimacy with Cancer: Program Development and Evaluation Addressing Sexual Health and Intimacy with Cancer Survivors 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 Addie L. Jacobs 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 INTIMACY WITH CANCER Abstract The purpose of this Doctoral Capstone Experience (DCE) was to develop and implement a program to address cancer survivors sexual health and intimacy concerns at Cancer Support Community of Central Indiana. Program development consisted of a thorough literature review, needs assessments from staff and survivors, and tracking measured outcomes for informed changes. Needs assessments from various stakeholders were completed until saturation was met, followed by thematic analysis to generate key themes to incorporate in each sessions topic. Key themes that emerged from staff and survivors that were addressed in this program included communication, loss of libido/sexual interest, defining intimacy, normalizing the topic of sexual health concerns, the importance of sex and intimacy, wanting to address sex and intimacy in a therapeutic setting, difficulty getting and maintaining an erection, activity modifications for intimate and sexual activity, adaptive devices and equipment for intimate and sexual activity, and the desire for partners to be included when addressing the topic. Eight participants, including survivors and spouses, attended one or more of the three sessions created for this program. Results indicated participants scores regarding their sexual health concerns increased, with an average increase of 0.74 for performance and an average increase of 0.98 for satisfaction, as measured by the Occupational Performance Index of Sexuality and Intimacy (OPISI). All three group sessions formative evaluations displayed an increase in knowledge from pre-survey to post-survey scores. Overall, this program has promise to effectively address sexual health concerns for survivors and will be continued at this community setting. MeSH Terms: Occupational Therapy, Survivorship, Cancer Survivors, Sexuality, Intimacy, Sexual Health, and Community Setting 4 INTIMACY WITH CANCER Intimacy with Cancer: Program Development and Evaluation Addressing Sexual Health and Intimacy with Cancer Survivors For the year 2018, in the United States (US), an estimated 1,735,350 new cases of cancer were diagnosed and approximately 65% of the estimated individuals with new cancer diagnoses will survive beyond their first year (National Cancer Institute, 2018). In the year 2015, there was an estimated 15.5 million cancer survivors in the US, which is expected to increase to 20.3 million by the year 2026 (National Cancer Institute, 2018). The National Cancer Institute (2018) notes that approximately 38% of men and women will be diagnosed with cancer during their lifetime, and as the US population continues to age, the cancer rates will also continue to increase with age. The decrease in cancer related deaths and increase in cancer survivors is likely due to the vast medical advances for detecting cancer sooner, as well as more effective treatment options (Johnson, 2015). For the purpose of this paper, a cancer survivor is defined as an individual from the point of diagnosis until the end of life (National Cancer Institute, 2014). As the number of cancer survivors continues to increase, so does knowledge on the common side effects survivors face due to cancer and the corresponding treatments. Sexual dysfunction is a common side effect of cancer and cancer treatment that is frequently observed with survivors of various types of cancer and in both men and women (Brotto et al., 2012). In addition to having physically related sexual concerns (sexual dysfunction), survivors are likely to experience negative self-view and body image, increased anxiety and depression, and trouble maintaining previous roles and routines in relation to sexuality and intimacy (Walker, Barnes, et al., 2018; Woods, Hevey, Ryall, & OKeefee, 2018). For the purpose of this paper, sexuality is defined as an intrinsic human experience of daily living which can impact a survivors selfesteem, self-expression, attitudes, emotions, quality of life, and overall well-being (Walker, INTIMACY WITH CANCER 5 Barnes, et al., 2018). Sexuality and intimacy can include, but are not limited to, sexual activity, meal preparation for intimate dinning, communication, meaningful touch, redefining pre-existing roles, and use of adaptive devices/equipment. It is important to note that sexuality and intimacy are not simply the act of sexual activity. Communication of feelings and emotions, personal values, roles and routines, as well as other Activities of Daily Living (ADLs) that help maintain a relationship are all aspects of sexuality and intimacy (Sellwood, Raghavendra, & Jewell, 2017; Walker, Barnes, et al., 2018). As stated above, sexual dysfunction, sexuality, and intimacy concerns are common areas of difficulty for survivors due to the illness and side effects of treatment (Brotto et al., 2012; Walker, Barnes, et al., 2018). Researchers in oncology and other practice areas have found that not addressing sexual health concerns can lead to decreased sexual quality of life, decreased overall quality of life, and decreased overall well-being (Barsky Reese et al., 2014; Eglseder, Webb, & Rennie, 2018; Walker, Barnes, et al., 2018). Polo and colleagues (2018) found, while investigating interventions utilized to address side effects of cancer and cancer treatments within the field of occupational therapy (OT), that across all of the survivorship side effects listed, sexual activity was the ADL that was addressed the least. This is troubling given that sexual activity is an occupation within the scope of OT practice and is a common concern for survivors within their first year after treatment (American Occupational Therapy Association [AOTA], 2014; Hwang et al., 2015). Walker, Barnes, and colleagues (2018) note occupational therapists (OTs) have the expertise to address occupational deficits with sexual health, including sexual knowledge, self-view, sexual interest, sexual responses, sexual behavior, sex/sexual activity, and family planning as it relates to fertility and contraception. OTs can use their expertise in areas of adaptations, modifications, and relaxation and stress reduction techniques to address the ADL of 6 INTIMACY WITH CANCER sexual activity and the ADL of personal device care for contraception and sexual devices, as well as the sexuality and intimacy aspect of social participation to increase quality of life for cancer survivors (AOTA, 2014; Newman 2011). The effects of cancer and its treatments do not only affect survivors during treatment, but can impact survivors more than 20 years after treatment (Koppelmans et al., 2012). Due to survivors living longer and dealing with these side effects for longer periods of time after treatment, care for survivors should not solely be provided during the acute phase (Polo et al., 2018). Polo and colleagues (2018) discuss this gap in practice settings and time of care provided for survivors, emphasizing Polo and Smiths (2017) call for OTs to address these concerns in the community setting. Given the information presented above, the aim of this Doctoral Capstone Experience (DCE) was to develop a program to address sexual health and intimacy concerns of cancer survivors in the community setting. In addition to evidence from the literature mentioned previously, as well as guidance from the Sexual Assessment Framework (SAF) and the PLISSIT model described in detail below, this program was designed to provide group education and oneon-one consultations to address the physical and psychological side effects that negatively impact the overall quality of life of survivors. Therefore, the purpose of this DCE was to increase cancer survivors quality of life by addressing their sexuality and intimacy concerns. Theoretical Framework PLISSIT Model For the development of this program, the PLISSIT model was used to help guide the design of the group sessions and one-on-one consultations. Walker, Barnes, and colleagues (2018) note that the PLISSIT model was developed to address the sensitive topic of sexuality 7 INTIMACY WITH CANCER during therapy and education. The PLISSIT Model and SAF are illustrated with specific references to this program in Appendix A. The levels, or stages, of information provided within this model include permission, limited information, specific suggestions, and intensive therapy (Kokesh, 2016; McBride & Rines, 2000). The healthcare provider works from the bottom to the top of the diagram and all levels might not be reached if they are deemed unnecessary (Kokesh, 2016). For example, if an individual is satisfied with the information gained in the limited information stage, he or she does not need to be guided through the specific suggestions stage. To further explain this model, the first level is P, for permission. The purpose is to gain permission from the individual to further discuss the sensitive topic, as well as to give the individual permission to bring up the topic (Kokesh, 2016; McBride & Rines, 2000). The second level is LI, for limited information. This is when general education and basic knowledge are provided, not completely unique to an individuals given situation (Kokesh, 2016; McBride & Rines, 2000). The unique information for the individuals specific situation is provided during the third level, SS, standing for specific suggestions (Kokesh, 2016; McBride & Rines, 2000). For the SS stage of this model, individualized information and education are provided based on the individuals unique situation and concerns (Kokesh, 2016; McBride & Rines, 2000). The final level or stage of this model is the IT level, short for intensive therapy (Kokesh, 2016; McBride & Rines, 2000). During the IT level, information or concerns are out of the healthcare professionals scope of practice and therefore, referrals are made to other professionals who have greater expertise in that given area (Kokesh, 2016; McBride & Rines, 2000). Sexual Assessment Framework As stated above, the theory that was used to help guide the development and implementation of this program is the SAF. The visual representation of this framework within INTIMACY WITH CANCER 8 the PLISSIT model can be found in Appendix A. The SAF was utilized with the PLISSIT model because Walker, Barnes, and colleagues (2018) state that even though the PLISSIT model can be exceptionally useful for guiding practitioners addressing this topic, it does not provide specific instructions for an all-inclusive assessment and intervention. Walker, Barnes, and colleagues (2018) found that the SAF, provided an effective format for which to explore the occupational nature of sexuality (p. 3). Even though the SAF was originally designed as a framework for the nursing profession, it has been useful for OTs who are addressing the topic of sexuality (Kokesh, 2016; McBride & Rines, 2000). The SAF describes the seven key components that make up sexual health, which are sexual knowledge, sexual behavior, sexual self-view, sexual interest, sexual response, fertility and contraception, and sexual activity (Kokesh, 2016; McBride & Rines, 2000). The first of the seven parts of sexual health listed above is sexual knowledge, which is composed of the individuals values and beliefs about their sexual activity and sexuality (Kokesh, 2016; McBride & Rines, 2000). The sexual behavior component is how the individual is creating and maintaining relationships (Kokesh, 2016; McBride & Rines, 2000). Sexual selfview is focused on the individuals body image and self-concept (Kokesh, 2016; McBride & Rines, 2000). The drive behind an individuals sexual activity and libido is termed sexual interest (Kokesh, 2016; McBride & Rines, 2000). Sexual response describes the physical response and arousal experienced during sexual activities (Kokesh, 2016; McBride & Rines, 2000). Activities such as family planning, education of safe sex, and various types of birth control are all within the fertility and contraception portion of sexual health (Kokesh, 2016; McBride & Rines, 2000). Finally, McBride and Rines (2000) describe sexual activity as being focused on skills such as gross and fine motor functioning, strength, dressing and undressing, 9 INTIMACY WITH CANCER management of bowels, management of bladder, affectionate activities, and transferring. These seven components of sexual health will be useful supplements for the limited information and specific suggestion levels of the PLISSIT model. Needs Assessments Needs assessments are a critical part of program development. A needs assessment is defined by Cole (2012) as being an organized set of methods used to help identify and define areas of need for a selected population. AOTA (2015) notes that needs assessments can lead to clearly defined goals and objectives for a group or program. Needs assessments should include gathering background information from literature reviews, collaboration with participants, interviews with potential participants, and interviews with individuals who come into regular contact with potential participants (key informants) (AOTA, 2015). After this has been completed, the data collected should be analyzed to assist with program development (AOTA, 2015). As the literature review was completed and summarized above, this section will focus on the remaining components of the needs assessment, specifically interviews with potential participants and key informants. In order to analyze the collected data from both sets of interviews, thematic analysis was utilized because it is a flexible method of identifying and reporting rich and detailed themes within a set of data (Braun & Clarke, 2006). Staff Needs Assessment In research methodology, one key purpose for using survey research is to help guide planning of health care services within the community (Stein, 2013). Stein (2013) found when it comes to community health planning, survey research is vital. Therefore, a seven-question survey was utilized when completing a staff needs assessment at the community site, which can INTIMACY WITH CANCER 10 be found in Appendix B. Questions were created after completion of the literature review in order to elicit information on concerns survivors have brought up with other group facilitators, counselors, and other staff at Cancer Support Community (CSC), as well as provide opportunities for staff to list recommendations for topics and suggestions for program development. Staff needs assessments were gathered until saturation was met, meaning when no new concepts or themes emerged from staff answers to the questions (Corbin & Strauss, 2015). Participant Needs Assessment Within the scope of OT, there are currently no formal assessment tools to address sexual health and intimacy concerns with any population. Therefore, Walker, Otte, and colleagues (2018) Occupational Performance Index of Sexuality and Intimacy (OPISI) was utilized for the participant needs assessment and summative program evaluation. This tool, designed through the lens of the SAF, was selected because of its significance given the topic and framework selected to guide this project (Walker, Otte et al, 2018). Due to the novelty of this assessment tool and the unestablished psychometric properties of the tool, the OPISI was utilized after permission was granted from Walker. The initial screen of the OPISI, which can be found with the complete tool in Appendix C, was utilized during the needs assessments until saturation was reached. Needs Assessment Results Nine staff members completed the needs assessment questionnaire. Key themes that emerged during thematic analysis of the staff needs assessments included communication, changes in relationship dynamics, body image/self-esteem, loss of libido/sexual interest, defining intimacy, and normalizing the topic of sexual health concerns. Forty-four percent of staff members noted communication as important, with communication appearing multiple times in INTIMACY WITH CANCER 11 each individual survey. Approximately 44% percent of individuals noted changes related to relationship dynamics as key. Approximately 33% of staff members listed body image/selfesteem as a major concern. Defining intimacy and loss of libido/sexual interest were both listed in approximately 33% of surveys. Finally, normalizing the topic of sexual health and concerns around the topic of sexuality and intimacy was present in approximately 22% of completed surveys. Two staff members suggested activity modifications and adaptive devices/equipment for addressing some of the above concerns. These suggestions included sensate focused techniques, stress reduction for performance anxiety, vacuum pumps, penis rings, mutual masturbation, nonintercourse sex, oral, and erotic literature and films. Four participants completed the OPISI initial screen, two survivors and two spouses. Key themes included the importance of sex and intimacy, discussing the subject and receiving handouts/brochures, wanting to address this topic in a therapeutic setting, and the desire for partners to be included when addressing the topic. The two survivors both noted self-view/body image, getting/keeping an erection, and medications, including Viagra, as key concerns. Two participants, a spouse and a survivor, noted that stigma and normalizing the topic were a very important part of what has kept them from addressing their intimacy concerns. Community Versus Acute Care Setting Sexual health is one concern survivors continue to face stigma with throughout the majority of OT practice settings. With this in mind, these needs assessments would likely be beneficial to utilize in both the community and acute care settings. As mentioned previously, sexual activity is a common concern within the first-year post treatment (Hwang et al., 2015), and therefore should be addressed within the acute care setting as well. However, the timing is 12 INTIMACY WITH CANCER not always appropriate given that changes related to sexuality and intimacy might not present until after treatment. Furthermore, it was more appropriate to complete this project and needs assessment in the community setting because in acute care survivors are more focused on survival and treatment, as opposed to sexual activity. Once survivors have completed treatment, transitioned to less frequent doctors appointments, and begin returning to regular life activities, these concerns become more evident. McCabe and colleagues (2013) note that a majority of survivors obtain continuing care within the community setting. This is a primary reason why Polo and Smith (2017) have called for OTs to recognize their potential roles within the community setting to help survivors with promotion of health and wellness, which should include sexual health and intimacy. Implementation The program created and implemented during this DCE was a three-part series of educational group sessions with optional one-on-one consultations to address sexual health and intimacy concerns with survivors and their spouses. Participants were provided with educational material during the first portion of each group session, followed by group discussion, which was open to anonymously written or verbally asked questions. During each session, participants were given a note card to write down any questions they were not comfortable asking aloud. These questions were then collected and addressed during the discussion portion of the session. At the end of each session, participants were also given the opportunity to sign up for individual consultations. Group one of this series addressed communication and defining sexuality and intimacy. During this session, sexuality and intimacy were explained beyond the act of intercourse. Other daily activities that could be included in sexuality and intimacy were also discussed, including INTIMACY WITH CANCER 13 meal preparation for intimate dinning, meaningful touch, and hand holding. The importance of communication, tips on how to communicate with healthcare providers, and how to communicate with a partner were also discussed during the first session. Participants were given the opportunity to complete the five love languages quiz to better understand their love language, with the intention of increasing effective communication. The second session of this three-part series was focused on activity modifications. During this group session education was provided on everyday activities included with intimacy, as well as energy conservation techniques that could assist with these activities. Activity modifications and energy conservation for the act of intercourse/sexual activity were discussed, in addition to common concerns that survivors face due to cancer and cancer treatment that impact sexual activity. Strategies and topics further discussed, following the introduction of these common concerns, included increased/routine masturbation and stimulation, an optional month-long masturbation challenge, positioning for pain and fatigue during sexual activity, nonintercourse alternatives for sexual activity, and sensate focused techniques. Finally, the third and final session in this series discussed adaptive devices and equipment to address common concerns survivors face with sexual activity and intimacy. During this session, barriers and stigmas associated with the use of adaptive devices were discussed, such as age-related stereotypes and participants perceptions of these devices. Devices, and the purposes of those devices, were introduced to the group, including positioning devices, harnesses, vibrators, dildos, fleshlights/mood pleasers, masturbation gloves, prostate stimulators, anal devices, sensitivity devices, lubricants, and hygiene products. Caution was given for use with some of these devices due to potential adverse reactions and sensitivity concerns. Websites that sell these devices, sell other devices not discussed, and provide sexual education articles, as well 14 INTIMACY WITH CANCER as provide discrete billing and shipping were also provided to participants during this final session. During each of these sessions, participants completed pre-/post surveys, created utilizing evidence-based literature, needs assessment results, and group materials provided in the sessions. These pre-/post surveys were utilized as formative evaluations to measure the effectiveness of each individual session. Prior to the first session and after completion of the last session, participants completed the OPISI in its entirety. The fully completed OPISI was utilized as a summative evaluation to measure the effectiveness of the overall program for participants. Leadership Skills Skills of an effective leader, as defined by AOTA (2013), include being goal oriented, respectful, effective with communication and planning, and motivating and challenging others. During this program, these skills of an effective leader were utilized through creating and facilitating each group session. Prior to the sessions, effective planning was completed to ensure all topics and materials were researched, organized, and suitable for each session topic. At the beginning of the sessions participants were reminded that the group was a safe, respectful, and judgment free zone. To increase effective communication, the opportunity for anonymous or verbally asked questions was presented. Finally, the leadership skill of motivating and challenging others was developed through the creation of this program as a whole because by advertising a program to address these sexual health and intimacy concerns, participants were motivated and challenged to begin the process of addressing their sexual health concerns. 15 INTIMACY WITH CANCER Staff Development Staff development occurred through advocating for OT as a profession, as well as for OT within the community setting. Throughout the duration of time spent at CSC, staff members were educated during staff meetings on the role of OTs with survivors, within the community setting, and with addressing sexual health concerns. Staff development was observed after these encounters through interns of other disciplines noting increased awareness of OT as a profession, as well as other staff members reporting their increased awareness of how OTs can help with sexual health concerns. Finally, another example of observed staff development following these meetings, was an increase in referrals to this program from other staff members and interns. Program Outcomes Throughout the entirety of the program there were a total of eight participants, including survivors and spouses, as well as three CSC interns that attended sessions. Of the total eight participants, two participants attended all three intimacy sessions. Four participants were educated on the topics from sessions one and two. The remaining two participants only attended and received education on topics from session one. Of the eight participants, three completed the OPISI prior to the first session and following the final session. Two of the three participants who completed the OPISI were not present for the final session, therefore they completed their reassessment over the phone following the final session. The three participants assessment results for summative evaluations will be explained in more detail below and can be found in Appendix D (table 1D and 2D). Of the total eight participants, six were over the age of 65 years old, resulting in 75% of the group population being older adults. For the summative evaluation of the entire program, the OPISI was utilized prior to the first session and following the final session. The groups initial performance average in their INTIMACY WITH CANCER 16 listed problem areas around sexual health and intimacy was 2.13 out of 10 and their group initial satisfaction average was 2.02 out of 10. The group reassessment average for performance was 2.87 out of 10 and their group reassessment satisfaction average was 3.00 out of 10. This indicates a group increase in performance by 0.74 and an increase in group satisfaction by 0.98; which shows increased perception of satisfaction and performance by participants with their sexual health problem areas. Formative evaluations of each session were completed through pre-/post-surveys, which can be found in Appendix E (session one), Appendix F (session two), and Appendix G (session three). Participants and interns completed these surveys prior to starting each session and following the discussion portion of each session. These formative evaluations were used to evaluate and measure individuals increased knowledge and education on the sexuality and intimacy topics presented. Results of the formative evaluations can be further seen and found in Appendix D (table 3D) with the summative evaluation results. For the first session, with a total number of six participants, the groups pre-survey average was a three out of five (60%) and the post-survey average was a 4.75 out of five (95%); indicating an increase in knowledge of 1.75 points. The groups average pre-survey score for the second session, with a total of nine participants, was 1.7 out of five (34.2%) and their post-survey average was 3.86 out of five (77.2%); demonstrating an increase in knowledge of 2.16 points. Finally, the third session groups average pre-survey score was 3.33 out of seven (47.5%) and post-survey average score was 5.67 out of seven (81%); indicating an increase in knowledge of 2.34 points. The three program outcome goals developed at the beginning of this DCE included increasing survivors education on sexuality and sexual dysfunction concerns, increasing survivors comfort with discussing their sexuality/sexual health concerns and being more 17 INTIMACY WITH CANCER comfortable seeking help for their sexual health concerns, as well as increasing satisfaction and participation in sexual activity and intimacy for survivors. The results from the formative assessments show that survivors and other participants of the sessions had increased knowledge and education of the topics discussed, as demonstrated by increased scores from the pre-survey to the post-survey. Results from the OPISI indicate that survivors had an average increase in participation (performance) and satisfaction with their sexual activity and intimacy, as evidenced by increased performance and satisfaction scores. Finally, through increased discussions during each session, there was observed increased comfort when discussing sexual health concerns and seeking help for those concerns among session participants, as demonstrated by increased conversations with survivors during the discussion portions of each session. Personal and professional outcome goals set at the beginning of this DCE included creating and implementing a program for survivors to address cancer and treatment related sexuality concerns, applying critical thinking and utilizing evidence-based practice principles to influence program development, using leadership and advocacy skills to demonstrate the value of OT with survivors and OTs role with sexuality and intimacy, using advocacy skills to demonstrate the value of OT in the community setting, and demonstrating professional development and continuing competence through increased confidence and ability to discuss sexual activity and intimacy with survivors. These goals have been met exceeding previously set standards through communication with staff and participants, evidence-based literature on sexual health, program development, and program implementation with survivors. Ongoing Quality Improvement Batalden and Davidoff (2007) defined quality improvement as a combined, collaborative effort from everyone involved to help make changes for better patient/client health outcomes, INTIMACY WITH CANCER 18 better system performance, and better professional development. The collaborative approach utilized for this DCE involved the needs assessments and feedback from staff and survivors, as well as insight from literature and sexual health experts in order to create a program that was best fit for survivors needs at this community site. Ongoing changes were applied to individual sessions following participants feedback after each session to help increase patient/client outcomes. Professional development occurred through reflection on suggestions from staff and participants on how to better develop and implement educational materials and facilitate discussion during sessions. Batalden and Davidoff (2007) mention the five knowledge systems for improvement, including generalizable scientific evidence, specific context awareness, performance measurement and analysis of patterns, plans for change, and execution of planned changes. The systems of generalizable scientific evidence and specific context awareness were utilized during this DCE through literature review and evidence-based practice for each session. In addition, specific context awareness also was utilized while completing the staff needs assessments. Performance measurements and analysis of patterns were completed through the formative and summative evaluations, as well as the thematic analysis of the needs assessments. Finally, plans for change were completed through the implementation of anonymous suggestions made by participants at the end of each session so that effective changes could be applied to the following sessions. Through these methods, quality improvement was continuously applied throughout each of the three sessions and will continue to be applied as the program remains at CSC. Programming Changes and Sustainability to Meet Societal Needs Reflecting on the outcomes of the ongoing quality improvement mentioned above, changes to this program will include interprofessional approaches with licensed mental health INTIMACY WITH CANCER 19 therapists at CSC, moving all three sessions to the open studio, and incorporating more discussion throughout the sessions. Plans are in place for a licensed mental health therapist to incorporate a mental health aspect in the first session of this program to address psychosocial concerns, such as decreased body image and self-esteem. This plan was put into place based on observations during the discussion portion of the first session and after suggestions from participants of the program. After reflecting on feedback from participants on the environments provided for each session, future sessions for this program will be held in the open studio instead of the closed off support group rooms at CSC. This decision was made after multiple participants stated they felt more comfortable in the open studio during the last session than in the support group room during sessions one and two. Finally, also reflecting on feedback from participants, more discussion will be incorporated throughout each session to help meet participants needs and desires to discuss their own concerns more openly in the group setting. For sustainability purposes, future volunteers can use the binder created and provided to the Vice President at CSC to run this program again with the recommended changes mentioned above. This binder, created with the intention of increasing sustainability, was divided into three sections, one for each session of the program. Each section of the binder included the created flyer for the session, all handouts provided to participants during the session, the pre-/post surveys utilized for formative evaluations, the PowerPoint that was utilized and distributed to participants during each session, and finally a handout to provide for sessions one and two to remind participants of the remaining sessions dates, times, and topics. The only item utilized during the program that was not provided in the binder was the OPISI. This summative assessment tool was purposively left out of the binder due to further edits being made by Walker, Otte, and colleagues (2018) for a formal final assessment tool. At this time, the plan discussed 20 INTIMACY WITH CANCER by this student and the Vice President at CSC is for this student to return to reimplement the program during the fall of 2019 or the spring of 2020. This change in seasonal time the program will be offered is to promote increased participation due to better weather conditions. Additionally, while the plan for this student to reimplement this program is in place, having this binder will be beneficial if these plans are no longer achievable and another volunteer is needed to run the program. The societal needs of survivors were met by this DCE through the implementation of this three-part program to address sexual dysfunction, sexual health, and intimacy concerns. This DCE further met the abovementioned needs by providing services within the community setting, the ideal environment when survivors are re-entering the community and returning to their everyday occupational activities that might not have been focused on during active treatment in the acute setting. Furthermore, the aforementioned changes and this students plan to volunteer as the program leader in the future are also ways that this program will continue to meet these societal needs with survivors in this community setting. Overall Learning Overall learning in the areas of program development and implementation comprised of increased knowledge with advertising strategies, contacting survivors and CSC staff for needs assessments, professional emailing with staff and participants, calling/contacting participants for reminders for next sessions, navigating opportunities for advocacy of the OT profession, and many other examples of communication with participants, staff, and interns during this DCE. Advocacy for the OT profession was completed in many ways, as discussed above, however the best exposure to navigating opportunities for advocacy was having the chance to go in front of the board of directors for CSC to explain the details of this program, provide a specific example 21 INTIMACY WITH CANCER of how this program was impacting survivors at CSC, discuss the role of OT with sexual health, and discuss the role of OT with survivors in the community setting. Communication with staff, through verbal communication and emailing, was helpful during this DCE for completing needs assessments, gathering information about potential participants, and resolving conflicts or concerns following sessions. Through this experience, confidence was gained with professional communication with staff and clients. Overall, communication was effective and professional, as well as timely and respectful. Areas for future improvement include increased creative involvement in advertising strategies and increased exposure to other groups offered at CSC for recruitment purposes. While other groups were educated on the upcoming sessions, this could have been expanded upon more in the beginning of this DCE. As previously stated, effective skills of a leader include being goal oriented, respectful, effective with communication, effective with planning, and motivating and challenging others (AOTA, 2013). Through this DCE these skills grew, especially effective planning and being goal oriented. Effective leadership can additionally be observed through the efforts mentioned above for advocating to staff and other interns on the role of OT with survivorship, in the community setting, and with sexual health concerns. Conclusion This DCE established a three-part program for addressing sexual health concerns with cancer survivors at CSC. Results indicated this program had successful outcomes in terms of improving participants perceived satisfaction and performance with sexual health and intimacy, as well as increased knowledge on topics discussed. Education and discussion-based programs within the community, such as the one created during this DCE, are important for addressing these common sexual health concerns faced by survivors that are continuing to become more INTIMACY WITH CANCER apparent as survivors are living longer after cancer treatment. Furthermore, cancer is also now recognized as a chronic condition and an emerging area of practice for OT (Baxter, Newman, Longpr & Polo, 2017), which is another reason it is important to create programs to address these common concerns survivors are continuing to face. Research and program development such as this, focusing on both sexual health of survivors and the community setting, will continue to fill the gaps in practice trends and literature around this critical concern for this population. 22 23 INTIMACY WITH CANCER References American Occupational Therapy Association. (2013). Standards of practice [PDF file]. Retrieved from https://nbcotexamprep.aota.org/Testhelp American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68 (Suppl. 1), S1-S48. American Occupational Therapy Association. (2015). Occupational therapy in mental health practice with adults [PDF file]. Retrieved from https://nbcotexamprep.aota.org/Testhelp Batalden, P. B., & Davidoff, F. (2007). What is quality improvement and how can it transform healthcare? Healthcare. Barsky Reese, J., Porter, L. S., Regan, K. R., Keefe, F. J., Azad, N. S., Diaz, L. A., Jr, Haythornthwaite, J. A. (2014). A randomized pilot trial of a telephone-based couples intervention for physical intimacy and sexual concerns in colorectal cancer. PsychoOncology, 23(9), 10051013. doi:10.1002/pon.3508 Baxter, M. F., Newman, R., Longpr, S. M., & Polo, K. M. (2017). Health policy perspectives: Occupational therapys role in cancer survivorship as a chronic condition. American Journal of Occupational Therapy, 71, 7103090010P1-7103090010P7. https://doi.org/10.5014/ajot.2017.713001 Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. Brotto, L. A., Erskine, Y., Carey, M., Ehlen, T., Finlayson, S., Heywood, M., Miller, D. (2012). A brief mindfulness-based cognitive behavioral intervention improves sexual INTIMACY WITH CANCER 24 functioning versus wait-list control in women treated for gynecologic cancer. Gynecologic Oncology, 125(2), 320325. doi:10.1016/j.ygyno.2012.01.035 Cole, M. (2012). Group dynamics in occupational therapy: The theoretical basis and practice application of group intervention (4th ed.). Thorofare, NJ: Slack. Corbin, J. M., & Strauss, A. L. (2015). Basics of qualitative research: Techniques and procedures for developing grounded theory (4th ed.) Los Angeles: SAGE. Eglseder, K., Webb, S., & Rennie, M. (2018). Sexual functioning in occupational therapy education: A survey of programs. Open Journal of Occupational Therapy, 6(3). doi:10.15353/2168-6408.1446 Hwang, E. J., Lokietz, N. C., Lozano, R. L., & Parke, M. A. (2015). Functional deficits and quality of life among cancer survivors: Implications for occupational therapy in cancer survivorship care. American Journal of Occupational Therapy, 69, 6906290010. Johnson, A. (2015). Cancer survivorship=long-term condition management. The British Journal of Occupational Therapy, 78(12), 725726. doi: 10.1177/0308022615611910 Kokesh, S. (2016). Addressing sexual health in occupational therapy. Retrieved from https://occupationaltherapycafe.com/2016/04/03/addressing-sexual-health-inoccupational-therapy/ Koppelmans, V., Breteler, M. M., Boogerd, W., Seynaeve, C., Gundy, C., & Schagen, S. B. (2012). Neuropsychological performance in survivors of breast cancer more than 20 years after adjuvant chemotherapy. Journal of Clinical Oncology, 30, 10801086. https://doi.org/10.1200/JCO.2011.37.0189 INTIMACY WITH CANCER 25 McBride, K., & Rines, B. (2000). Sexuality and spinal cord injury: A road map for nurses. Sci Nursing: A Publication of the American Association of Spinal Cord Injury Nurses,17(1), 8-13. McCabe, M. S., Faithfull, S., Makin, W., & Wengstrom, Y. (2013). Survivorship programs and care planning. Cancer, 119(Suppl. 11), 21792186. https://doi.org/10.1002/cncr.28068 National Cancer Institute. (2014). Definitions. Retrieved from https://cancercontrol.cancer.gov/ocs/statistics/definitions.html National Cancer Institute. (2018). Cancer statistics. Retrieved from https://www.cancer.gov/about-cancer/understanding/statistics Newman, R. (2011). Tips for living life to its fullest: Living with breast cancer. American Occupational Therapy Association Polo, K. M., Badger, K. R., Harkness, M. L., Jacobs, A. L., Lynn, J. E., & Mathews, E. A. (2018). Interventions for cancer survivors in occupational therapy: A national survey. Unpublished manuscript. Polo, K. M., & Smith, C. (2017). Centennial TopicsTaking our seat at the table: Community cancer survivorship. American Journal of Occupational Therapy, 71, 7102100010. doi:10.5014/ajot.2017.020693. Sellwood, D., Raghavendra, P., & Jewell, P. (2017). Sexuality and intimacy for people with congenital physical and communication disabilities: Barriers and facilitators: A systematic review. Sexuality and Disability, 35(2), 227-244. doi: 10.1007/s11195-0179474-z 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 INTIMACY WITH CANCER 26 Walker, B. A., Barnes, A., Cesinger, H., LeCount, A., Mull, L., Strobel, C., & Wooley, A. (2018). Exploring the occupational nature of sexuality and intimacy for couples following the onset of a disabling injury. Unpublished manuscript. Walker, B. A., Otte, K., Lemond, K., Hess, P., Kaizer, K., Faulkner, T., Christy, D. (2018). Occupational Performance of Sexuality and Intimacy (OPISI) [Unpublished measurement instrument]. Woods, L., Hevey, D., Ryall, N., & OKeeffe, F. (2018). Sex after amputation: The relationships between sexual functioning, body image, mood and anxiety in persons with a lower limb amputation. Disability and Rehabilitation, 40(14), 1663-1670. doi: 10.1080/09638288.2017.1306585 27 INTIMACY WITH CANCER Appendix A Figure of Theoretical Frameworks Figure 1 Sexual Assessment Framework and PLISSIT Model Note: Visual representation of theory and model and how they are used to guide this program. 28 INTIMACY WITH CANCER Appendix B Questionnaire for Staff Needs Assessment Key Definition: Sexuality/Intimacy: An intrinsic human experience of daily living that can impact selfesteem, self-expression, quality of life, and general well-being (Walker et al., 2018). This could include, but not limited to: sexual activity, meal preparation for intimate dinning, communication, meaningful touch, redefining stereotypical gender roles, and use of adaptive equipment. 1. Have you had any survivors note concerns with sexuality and/or intimacy? 2. Have you heard other staff mention survivors with sexuality and/or intimacy concerns? 3. If yes to either, what are some common concerns noted by survivors? 4. Have you noticed any common threads/concerns around sexuality and or intimacy with survivors in groups youve facilitated? 5. Have any of your networking sites mentioned sexuality and/or intimacy as an area of concern? 6. What are some topics/threads you think would be helpful to include in this programming? 7. Is there anything else you feel is important to note going forward while developing this program? 29 INTIMACY WITH CANCER Appendix C Occupational Performance Index for Sexuality and Intimacy Occupational Performance Inventory of Sexuality and Intimacy (OPISI) Authors: Beth Ann Walker, Phd, OTR Kasey Otte, Kelsey Lemond, Pamela Hess, Kandyse Kaizer, Tori Faulkner, Davis Christy 2018 The Occupational Performance Inventory of Sexuality and Intimacy (OPISI) includes an individualized self-screen and an in-depth self-assessment for clients of occupational therapy followed by an individualized measure for use by occupational therapists to detect self-perceived change in occupational performance problems associated with sexuality and intimacy over time. Client Name: Date of Screen: Date of Full Assessment: Date of Reassessment: Occupational Therapist: It is normal to have questions about how your illness, injury, disability, or life stage may impact sexuality and intimacy. Many individuals would like more information regarding this topic, but do not know who to ask or what to ask. Occupational therapists work with individuals of all ages to improve their ability to perform activities of daily living. Sex and intimacy are considered activities of daily living. Although you may be apprehensive to discuss the topic or complete the questionnaire, your occupational therapist can use the following information to help you in this area or make a referral for specialized services if needed. Below are a number of statements regarding concerns you may have as it relates to sexuality and intimacy. Please read each one and select the items that apply to you. INTIMACY WITH CANCER 30 Initial Screen Sexual Knowledge: Includes your values and beliefs regarding sexuality and intimacy and serves as a guide to determine what information you need in order to increase your understanding of changes to sexuality and intimacy as a result of your illness, injury, disability, or life stage. According to my values and beliefs regarding sexuality and intimacy: Sex and Intimacy are important to me I would prefer to only receive handouts or brochures about this subject I would prefer to talk about this subject and receive handouts or brochures about this subject I am not sure who to ask when I experience difficulties with sexuality and intimacy I want to address this topic in therapy I want my partner to be included when addressing the topic in therapy I wish I knew other individuals with similar conditions to discuss aspects of sexuality and intimacy I need more information regarding the overall impact my illness, injury, disability, or life stage has on: My sexual self-view, sexual identity, self-esteem, and body image (p3) My sexual interest or desire to participate in sexual activities (p4) My bodys sexual response: ability to achieve penile erection, vaginal lubrication, ejaculation, or orgasm (p5) My ability to initiate or maintain intimate/sexual relationship(s) or sexual behavior (p6) My ability to engage in sexual activity (p7) My ability to practice safe sex for sexual health (p8) My ability to manage aspects of fertility and family planning (p8) Additional Comments or Concerns: Check all that apply INTIMACY WITH CANCER 31 Below are a number of statements regarding concerns you may have as it relates to Sexual Self-View. Please read each one and select the items that apply to you. Sexual Self-View: includes aspects of your sexual identity, gender identity, self-esteem, and/or body image In regards to my sexual self-view, I have the following concerns: My sex life is not ideal I do not feel attractive or appealing I am afraid of being rejected sexually My partner does not see me as sexually attractive I feel like a failure as a sexual partner My insecurities interfere with my ability to have a satisfying intimate/sexual relationship Poor datable self-esteem interferes with my ability to have a satisfying intimate/sexual relationship My partners(s) guilt interferes in our ability to enjoy participation in sexual activity My guilt interferes in my ability to enjoy participation in sexual activity Depression interferes with my ability to express my sexuality Anxiety interferes in my ability to express my sexuality My sexual desires interfere with my religious/spiritual beliefs My illness/disability has affected my gender identity, sexual preference, or sexual orientation I do not feel that my sexual identity is accepted by people I interact with on a daily basis Expressing my sexuality/sexual identity is a challenge I am no longer comfortable expressing my sexual identity I do not feel that I am able to perform basic roles associated with my sexual identity Additional Comments or Concerns: Check all that apply 32 INTIMACY WITH CANCER Below are a number of statements regarding concerns you may have as it relates to Sexual Interest. Please read each one and select the items that apply to you. Sexual Interest: includes your sexual interest, sex drive, libido, or desire to participate in sexual activities. In regards to sexual interest or the physical and psychological drive behind sexual activity engagement, I have the following concerns: My level of sexual interest (i.e. sex drive) has changed since the onset of illness/injury My condition interferes with feeling aroused or excited in preparation or during sexual activities I am dissatisfied with my desire to engage in sexual behavior with my partner(s) Limited energy interferes with my sex drive Limited motivation interferes with my sex drive My appearance interferes with my sex drive Fear interferes with my sex drive Depression interferes with my sex drive Anxiety interferes with my sex drive Lack of experience interferes with my sex drive My interest in sex is excessive and interferes with my sex drive Pain, or anticipation of pain, interferes with my sex drive Lack of sleep interferes with my sex drive Lack of spontaneity interferes with my sex drive Stress between myself and my partner(s) interferes with my sex drive Limited control of body movements interferes with my sex drive Anger and/or resentment interferes with my sex drive Lack of time to participate in sexual activities interferes with my sex drive Inability to take on a dominating or submissive role interferes with my interest in engaging in sexual activity Check all that apply INTIMACY WITH CANCER I am concerned that my medications interfere with my interest in engaging in sexual activity Fear of pregnancy interferes with my interest in sex and intimacy Fear of sexually transmitted diseases interfere with my interest in sex and intimacy Additional Comments or Concerns: 33 INTIMACY WITH CANCER 34 Below are a number of statements regarding concerns you may have as it relates to Sexual Response. Please read each one and select the items that apply to you. Sexual Response: involves your bodys physical response associated with sexual activity such as penile erection, vaginal lubrication, response to erogenous zones, nipple erection, ejaculation, and/or orgasm. In regards to sexual response I have the following concerns: I experience difficulty with arousal during sexual activity I experience difficulty with achieving orgasm during sexual activity I am unable to find other means of experiencing sexual satisfaction to compensate for lack of orgasm I am unable to feel satisfied with sexual activity due to lack of orgasm Loss of feeling or numbness in my genitals Erectile dysfunction or vaginal dryness Being aroused at appropriate times Age related changes interfere with my participation in sex and intimacy Inability to relax Change in physical response due to condition Side effects of medication interfering with my sexual response Additional Comments or Concerns: Check all that apply INTIMACY WITH CANCER 35 Below are a number of statements regarding concerns you may have as it relates to Sexual Behavior. Please read each one and select the items that apply to you. Sexual Behavior: Involves your ability to initiate or maintain an intimate/sexual relationship Check all that apply In regards to my ability to initiate or maintain an intimate and/or sexual relationship, I have the following concerns: I do not have a partner, and this concerns me My ability to find persons to engage in sexual activities My ability to travel to meet partner(s) My ability to understand, access, and use social media platforms to develop relationships Due to my condition, I am unsatisfied with my sexual relationship(s) My condition limits my ability to fulfill my partners(s) needs Limitations in my ability or my partners ability to empathize with my condition interferes in our intimate/sexual relationship Difficulty regulating my mood or behavior interferes with my ability to adequately express sexual interest to my partner(s) or potential partner(s) I do not know how to discuss or explain aspects of sexuality and intimacy My ability to express my sexual interest and desires in a way that my partner(s) understands My partners(s) ability to meet my sexual needs within our intimate/sexual relationship I am not comfortable discussing sexual needs with my partner(s) I feel that my partners(s) limited understanding of my condition serves as a barrier to our intimate/sexual relationship Fear that my partner(s) will not respect my boundaries within the sexual relationship Fear that I will be taken advantage of in relationships My ability to initiate or end a relationship with a partner My partner is my caregiver, and I feel like this dynamic interferes with our sexual relationship My ability to attend to my appearance and hygiene in preparation for romantic encounters INTIMACY WITH CANCER My ability to create romantic environment Additional Comments or Concerns: 36 INTIMACY WITH CANCER 37 Below are a number of statements regarding concerns you may have as it relates to Sexual Activity. Please read each one and select the items that apply to you. Sexual Activity: includes your ability to engage in intimate and sexual activities such as hugging, foreplay, masturbation, and intercourse In regards to engagement in sexual activity, I have the following concerns: My symptoms prevent me from enjoying or participating in sexual activities I experience pain during sexual activity I experience discomfort or pain with penetration I avoid participation in sexual activities that include penetration due to pain Ability to participate in oral sex Tremors or shaking in my hands or body My ability to position myself adequately or safely during sexual activities Inability to control bladder or urinary symptoms during sexual activity Catheters or other devices interfering with sexual activity Inability to control bowel Inability to control bowel during sexual activity Limited strength during sexual activity Limited energy or physical endurance during sexual activity Limited balance during sexual activity Limited control of body movements during sexual activity Limited flexibility during sexual activity Limited coordination during sexual activity Impaired vision during sexual activity Impaired hearing during sexual activity Impaired sense of touch and pressure during sexual activity Lack of privacy during sexual activity Check all that apply INTIMACY WITH CANCER I dont know how to use alternative methods of receiving pleasure, such as sexual toys, aides, or devices during sexual activity. Additional Comments or Concerns: 38 INTIMACY WITH CANCER 39 Below are a number of statements regarding concerns you may have as it relates to Sexual Health and Family Planning. Please read each one and select the items that apply to you. Sexual Health and Family Planning: involves your ability to develop, manage and maintain routines for sexual health and family planning; this includes practicing safe sex, identifying, understanding, selecting and use of contraception, and planning for parenthood. In regards to sexual health and family planning, I have the following concerns: Ability to safely engage in sexual activities Ability to protect myself from sexual assault or rape Ability to choose/use the right method of contraception to prevent pregnancy or STDs Ability to discuss safe sex practices with my partner(s) Ability to use contraception as intended Ability to conceive a child Ability to manage day to day tasks during pregnancy Ability to be manage day to day tasks associated with parenting Ability to provide care and supervision to support the developmental needs of a child Additional Comments or Concerns: Check all that apply 40 INTIMACY WITH CANCER Following a thorough review and discussion of the inventory, confirm with the client the 5 most important problem areas and record them below. Ask the client to rate each problem on performance and satisfaction with performance on a scale from 1-10, with 1 indicating very poor performance or satisfaction and 10 indicating very high performance or satisfaction. Total scores are calculated by adding together the performance or satisfaction scores for all problems and dividing by the number of problems. At reassessment, the client scores each problem again for performance and satisfaction. Calculate the new scores and the change score. Occupational Performance Problem Initial Assessment: Performance Satisfaction 1. 2. 3. 4. 5. Total performance or satisfaction scores Number of problems Total Score = Score/# of problems Change in performance = Performance Score 2 - Performance Score 1 Change in satisfaction = Satisfaction Score 2 - Satisfaction Score 1 Reassessment: Performance Satisfaction INTIMACY WITH CANCER 41 Additional Concerns: Beyond the 5 most important problem areas, please list any remaining concerns the client may have. Notes: INTIMACY WITH CANCER Based on the results of the OPISI and discussion with the client, a referral to the following services is also recommended: Attending Physician Sex Therapist Psychiatric Services Social Services Physical Therapy Other: 42 Check all that apply 43 INTIMACY WITH CANCER Appendix D Tables of Program Results Table 1D Summative Evaluation OPISI Performance Scores Initial Performance Score Reassessment Performance Score Change in Performance Score Participant A 1.4 1.6 0.20 Participant B 4 6 2.00 Participant C 1 1 0 Group Averages 2.13 2.87 0.74 Note. Scores are based on a rating scale of one to 10, with a rate of one being little to no performance and a rate of 10 being no problems with performance. Table 2D Summative Evaluation OPISI Satisfaction Scores Initial Satisfaction Score Reassessment Satisfaction Score Change in Satisfaction Score Participant A 1.4 2 0.60 Participant B 3.67 6 2.33 Participant C 1 1 0 Group Averages 2.02 3 0.98 Note. Scores are based on a rating scale of one to 10, with a rate of one being no satisfaction with current performance and a rate of 10 being completely satisfied with current performance. 44 INTIMACY WITH CANCER Table 3D Formative Evaluation of Knowledge Scores from Pre-/Post Surveys Pre-Survey Group Average Score Post-Survey Group Average Score Change in Group Average Score Session One 3.00 (60%) 4.75 (95%) + 1.75 (+ 35%) Session Two 1.71 (34.2%) 3.86 (77.2%) + 2.14 (+ 43%) Session Three 3.33 (47.5%) 5.67 (81%) + 2.33 (+ 33.5%) Note. Scores for session one and two are out of five possible points. Scores from session three are out of seven possible points. 45 INTIMACY WITH CANCER Appendix E Formative Evaluation Questions from Session One Pre-/Post Surveys 1. Is sexuality and intimacy just sexual activity? 2. Who is responsible for bringing up the topic of sexual health concerns with your healthcare team? 3. What is your love language? 4. True or false? Sexual health concerns are common among men and women who have had various types of cancer. 5. True or false? It is important to focus on societal views for traditional gender roles when trying to re-establish your new self after cancer and cancer treatment. 46 INTIMACY WITH CANCER Appendix F Formative Evaluation Questions from Session Two Pre-/Post Surveys 1. Circle the correct answer: When it comes to masturbation, (increasing or decreasing) masturbation can increase sensitivity during intercourse. 2. True or False: Sensate focused techniques are more about providing pleasure than the sensation of touch itself. 3. True or False: Increasing masturbation can help with sexual function and sleep quality. 4. What are 3 alternatives to intercourse sexual activity: 1) 2) 3) 5. The 5 main strategies for conserving energy during everyday tasks include: 1) 2) 3) 4) 5) 47 INTIMACY WITH CANCER Appendix G Formative Evaluation Questions from Session Three Pre-/Post Surveys 1) List 3 websites for purchasing sexual activity devices and/or equipment that offer discrete packaging. 1. 2. 3. 2) True or false: Vibrators are for external stimulation and internal stimulation. 3) True or false: Vibrators decrease males erectile function. 4) List 3 types of vibrators: 1. 2. 3. 5) Prostate stimulators can be used: a. During oral sex b. During intercourse c. During masturbation d. All of the above e. A and B, but not C 6) Ben-Wa Balls can: a. Weaken vaginal walls b. Increase intensity of orgasm c. Help women reach orgasm quicker d. All of the above e. B and C, but not A 7) List 3 alternative everyday devices that can be used in similar ways as these sexual activity devices. 1. 2. 3.  ...

... Title: An Interdisciplinary Approach to Concussion Rehabilitation Brett Hutson August, 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. Jenny FOGO A Capstone Project An Interdisciplinary Approach to Concussion Rehabilitation 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 Brett Hutson 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 Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 3 Abstract The purpose of the Doctoral Capstone at the Rehabilitation hospital of Indiana Northwest Brain Injury Center (INBIC) was to complete the initial stages of program development for a concussion clinic. Educational resources were developed and an evidence based presentation was provided for the staff at INBIC. The DCE student developed a needs assessment, to gain an understanding of the background therapists at the facility had for treating patients diagnosed with post-concussion syndrome (PCS), and to identify what resources staff would like to have at the facility. To meet the demands identified in the needs assessment several educational resources were developed for the therapists to utilize when treating patients diagnosed with PCS. In total eight resources were created including:1) Facts about concussions, 2) vision, 3) vestibular, 4) cognitive, 5) healthy sleep/stress, 6) return to school, 7) return to work, 8) work ergonomics. After the completion of the evidence based presentation, staff reported a 100% satisfaction level with the resources created by the DCE student. Therapists at the facility have access to the resources through the online drive. Sustainability and carryover was discussed with the therapy manager, who is responsible for continuation. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 4 Interdisciplinary Approach to Concussion Care Concussions, also known as a mild traumatic brain injury (mTBI) are becoming a more common injury in the United States, with at least 3 million reported cases each year (Difazio, Silverberg, Kirkwood, Bernier & Iverson, 2016). A concussion/mTBI involves a complex pathophysiological process induced by biomechanical forces (Leddy, Baker & Willer, 2016 pg. 438). A concussion can result from a force to the head sustained during typical everyday activities such as, playing sports, driving, or while completing activities at work. (Acord-Vira, Davis, Wheeler & Cannoy, 2018). There are several ways to measure the severity of a brain injury. First a physician can measure an individuals level of consciousness using the Glasgow Coma Scale (GCS); a score between 13-15 is considered mild on the GCS (Wljas et al, 2015). Second, duration of loss of consciousness can be used as a measurement of severity. Loss of consciousness lasting less than 30 minutes can be diagnosed as a mTBI (Wljas et al, 2015). Lastly, post traumatic amnesia (PTA), measured from the time the injury occurs, to when an individual regains continuous memory; using this measurement a mTBI is diagnosed if continuous memory returns within 24 hours (Wljas et al, 2015). The initial symptoms following a concussion include: physical (eg., headache, dizziness, nausea), vestibular (eg, balance, ocular reflex, saccades), and cognitive (eg, reaction time, processing speeds, and memory) (Pearce, Sufrinko, Lau, Henry, Collins & Kontos, 2015). Evidence shows the majority of individuals recover from the injury after a brief period of time, however, researchers have found that 14-26% of individuals diagnosed will have persistent symptoms (Losoi et al, 2016). Another study, conducted in a military concussion clinic by Cogan Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 5 and colleagues (2018), provided evidence that 15-20% of individuals recovering from a mTBI experienced persistent physical, cognitive, and emotional symptoms. When concussion symptoms are prolonged, persisting for greater than three months, an individual may be diagnosed with post-concussion syndrome (PCS) (Leddy, et al, 2016). It is important to note that PCS is not a single pathophysiological entity. It is a term used to describe a constellation of nonspecific symptoms. (Leddy, et al, 2016 pg. 438). The typical PCS symptoms include headache, poor concentration, fatigue, visual disturbances, decreased memory, and slowed thinking, however, there are a variety of physiological and psychological symptoms that in many cases can complicate an individual a recovery (Snell, Macleod & Anderson, 2016). The variety of symptoms creates a challenge for clinicians to determine whether symptoms are prolonged from the concussion/mTBI, or associated with premorbid conditions that may or may not be associated with the injury (Leddy, et al, 2016). Evidence shows that due to the complexity of this diagnoses, providing evidence-supported treatment early in the rehabilitation process is critical in the recovery process (Losoi et al, 2016). Role of Occupational Therapy The PCS symptoms noted above can lead to a variety of occupational deficits in activities of daily living (ADLs) and instrumental activities of daily living (IADLs), such as sleep, work, leisure, and school (Cogan, Huang & Philip, 2018). Occupational Therapy practitioners have unique qualifications to assist individuals suffering from PCS symptoms regain independence in their ADLs and IADLs (Brayton-Chung, Finch & Keilty, 2016). Initially, an occupational therapist will focus on developing rapport and identifying the individuals goals (Brayton-Chung, et al, 2016). A qualitative research study completed with military personnel showed that the positive therapeutic relationship developed between the Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 6 occupational therapist and the patient was one of the most beneficial aspects of therapy (Cogan, et al, 2018). Once goals are identified, the occupational therapist will address performance patterns and skills that will increase engagement in an individuals meaningful daily activities (Brayton-Chung, et al, 2016). Occupational therapy alone however, will not be effective in treating the variety of PCS symptoms. Individuals recovering from PCS symptoms require a multidisciplinary team consisting of an occupational therapist, a speech therapist, a physical therapist, as well as physicians to develop an effective rehabilitation plan (Brayton-Chung, et al, 2016). Physical Symptoms Following a concussion, an individual may have such as dizziness, fatigue, balance problems, and headaches (CDC, 2016). Collaboration between the occupational and physical therapist helps to create a holistic rehabilitation plan to treat these physical symptoms (BraytonChung, et al, 2016). Much research has been focused on physical rest and its use as an intervention for individuals recovering from concussions (DiFazio, et al, 2016). The amount of rest recommended has not been established, however, researchers have shown 24-48 hours may be beneficial when followed by a gradual return to daily activities (Leddy, et al, 2016). Thomas and colleagues (2015) compared individuals prescribed with strict rest and individuals prescribed with a gradual return to activity. The study found that individuals prescribed with strict rest reported more post concussive symptoms over the course of the study. The study supports prescribing a graded return to activity following a concussion (Thomas, et al, 2015) Fatigue may be addressed by the occupational and the physical therapist. The occupational therapist initially may have an individual complete a daily or weekly schedule to identify which activities may cause symptoms to appear (Brayton-Chung, et al, 2016). Many Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 7 individuals with PCS symptoms have difficulty falling asleep or they are sleeping less than before their injury (Wickwire, et al, 2016 & Sullivan, Berndt, Edmend, Smith & Allan, 2016). Occupational therapists can provide individuals with education on the role of sleep during the recovery process and the importance of developing healthy sleep habits by planning rest breaks during the day, and making environmental modifications to help manage the symptoms (Brayton-Chung, et al, 2016). Recent research has shown that controlled exercise, for individuals with PCS symptoms may enhance their recovery (Leddy, Hinds, Sirica & Willer, 2016). Physical therapists use their expertise to develop various exercise tests to provoke PCS symptoms that may not be seen at rest (Kozlowski, Graham, Leddy, Devinney-Boymel & Willer, 2013). Stroth and colleagues (2009) suggested that exercise improves brain function and has favorable effects on neuroplasticity six to eight weeks after starting exercise. The Zurich guidelines currently advise to begin light aerobic activity such as walking or a stationary bike, once an individual is asymptomatic (McCrory et al, 2013). One reliable exercise test currently being used is the Buffalo Concussion Treadmill Test (BCTT). The BCTT was utilized in a recent study to reveal physiological dysfunction after a concussion (Leddy, et al, 2016). A lack of symptom exacerbation seen during the BCTT may be useful in identifying other diagnoses outside of PCS to account for an individuals resting symptoms (Kozlowski, et al, 2013). The results from graded exercise testing can also be used by occupational therapists to designs interventions to allow a safe return to meaningful occupations (Brayton-Chung, et al, 2016). Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 8 Vision/Vestibular Dysfunction Visual deficits and vestibular dysfunction related to the head and neck are also common PCS symptoms that require a collaborative approach between the occupational and physical therapist (Brayton-Chung, et al, 2016). The vestibular system plays a vital role maintaining spatial orientation, visual orientation, and balance function (Broglio, Collins, Williams, Mucha & Kontos, 2015). A recent study found that (30-65%) of individuals with a mTBI report oculomotor problems such as blurred vision, diplopia, difficulty tracking a moving target, and difficulty reading (Pearce, et al, 2015). If an individual report one or more of the above deficits, it is likely to have adverse consequences in the individuals performance of ADLs and IADls (Brayton-Chung, et al, 2016). Research conducted by Gallaway and colleagues (2017), shows the most prevalent post concussive visual diagnoses were accommodative insufficiency (AI) and convergence insufficiency (CI). The researchers examined two hundred and eighteen participants suffering from post-concussion symptoms. Of the participants 47% had CI and 42% had AI. A study involving athletes with sports related concussions completed by Pearce and colleagues, also showed that CI was common in 42% of athletes (Pearce, et al, 2015). Both CI and AI can be treated through vision therapy, where the focus of the rehabilitation is to remediate vergence, versional eye movement, and accommodation. In Gallaways study (2017), vision therapy was shown to have successful or improved outcomes in the majority of the individuals that completed vision therapy. Some common complaints individuals with PCS report are dizziness and imbalance (Moore, Adams, & Barakatt, 2016). Rehabilitation performed by a licensed physical therapist specializing in vestibular rehab may be used to treat these symptoms (Broglio, et al, Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 9 2015). Common vestibular impairments an individual may have include benign paroxysmal positional vertigo, impaired postural control, exercise induced dizziness, and cervicogenic (Broglio, et al, 2015). Physical therapy often utilizes intervention strategies such as dynamic balance training, and manual therapy for the cervical spine, to remediate balance difficulties. (Broglio, et al, 2015). Communication between all members of the rehabilitation team, is vital to ensure a patients symptoms are being treated appropriately (Brayton-Chung, et al, 2016). As an individual progress, the occupational therapist can design a graded intervention to increase participation in meaningful occupations (Brayton-Chung, et al, 2016). Cognitive Symptoms Cognitive rehabilitation is a significant component in the collaborative approach needed to treat individuals suffering from mTBI (Moore, et al, 2010). Cognitive symptoms such as difficulty concentrating, difficulty thinking clearly, feeling slowed down, and having difficulty remembering new information (Brayton-Chung, et al, 2016) may be persistent following a concussion . Mental fatigue is also a common complaint individuals report who have been diagnosed with a mTBI (Johansson, Bergund & Rnnbck, 2019). Speech language pathologists design interventions to correct deficits in executive function, cognitive endurance and memory (Brayton-Chung, et al, 2016). An individuals cognitive status plays an important role in occupational performance (AOTA, 2013). Moore and colleagues, (2010) demonstrated that a cognitive training program can be used to support attainment of work among veterans suffering from persistent cognitive symptoms resulting from a mTBI (Moore, et al, 2010). More research is needed to show the effectiveness in neurocognitive rehabilitation for individuals suffering from PCS symptoms. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 10 Return to Work/School Much research has been completed to examine how PCS symptoms impact an individuals return to work and school. Wljas and colleagues (2015) examined 109 individuals who suffered a mTBI and the factors involved with returning to work. The study found that two weeks following the injury 59.6% of individuals returned to work, at 4 weeks 70.6%, at 2 months 91.7%, and at 1 year 97.2% (Wljas et al, 2015). This specific study found that there were four crucial variables that impacted the return to work timeframe. The participants age, fatigue rating, intracranial abnormality at the day of injury, and multiple bodily injuries. Although nearly all individuals return to work, one should consider the perceived productivity loss that may occur due to these injuries. Silverberg and colleagues (2018) examined work productivity loss in 46 individuals recovering from a mTBI. In this study 60.6% of the participants reported getting less work done when returning to their job, and 42.4% reported making more mistakes (Silverberg, Panenka & Iverson, 2018). This data suggest that even after returning to work, the PCS symptoms may still be affecting an individuals ability to perform at their highest level. Occupational therapists are trained to address performance skills and patterns, and can assist these individuals in designing return to work guidelines, (Acord-Vira, et al, 2018). This may be accomplished through activity analysis, activity grading, and environmental modifications (Acord-Vira, et al, 2018). A recent poll completed by 2,000 adults in the United States showed that 70% of the participants did not realize that concussions are treatable (Kontos & Collins, 2018). INBIC is an outpatient facility designed to assist individuals recovering from a variety of neurological injuries reach their highest potential for independence. The staff at INBIC consist of clinical Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 11 neuropsychologists, physical therapists, occupational therapists and Speech therapists. The variety of disciplines available make the facility a great resource for individuals with PCS. The purpose of the Doctoral Capstone at INBIC is to complete the initial stages of program development for a concussion clinic at INBIC. Educational resources will be developed and an evidence based presentation will be provided for the staff at INBIC. Theoretical Basis The Person-Environment-Occupation-Performance (PEOP) model emphasizes an individuals daily occupations and the factors that influence the individuals performance (Cole & Tufano, 2008). There is a dynamic relationship between the person, occupation, and environment that influences an individuals occupational performance (Reed & Lee, 2012). An occupational therapist treating individuals suffering from PCS can use the PEOP model to increase an individuals occupational performance by examining the factors related to the person, environment, and occupation. The person is made up of the psychological, cognitive, physiological, and spiritual factors. The environment consists of the physical, cultural, and societal factors of an individuals life (Cole, et al, 2008). PCS can result in physical, vestibular, and cognitive changes that will impact an individuals ability to participate in occupations and the environment in which these occupations are performed. An occupational therapist using this model with this population must consider these changes when designing evidence based interventions. The Rehabilitative Frame of Reference (FOR) aims for individuals to reach independence in occupations despite impairments (Cole, et al, 2008). As the research conveys, PCS may result in a variety of deficits that will require multiple rehabilitative strategies (Snell, et al, 2016). An occupational therapist may use the Rehabilitative FOR to develop appropriate interventions, Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 12 environmental adaptations, and compensatory strategies to overcome these deficits and reach independence. Using the PEOP model and Rehabilitative FOR can assist an occupational therapist working with this population by providing structure and organization, which will result in increased efficacy (Bonnel & Smith 2018) Screening and Evaluation Needs Assessment The DCE student created broad goals and objectives prior to the capstone experience. The goals and objectives were then edited and finalized with approval from the site and faculty mentors within the first two weeks of the DCE. During the first and second week of the DCE the student was introduced to the therapy staff, attended rounds and staff meetings, and completed orientation at INBIC. Following the orientation to the site, a self-created ten-item needs assessment survey was formed (See Appendix A). According to Stein, Rice, and Cutler (2013) the main purpose of survey research is to obtain accurate objective descriptions about a specific universe of people or entities (2013, p. 130). The purpose of the assessment was to determine the therapists level of confidence treating Post-Concussion Syndrome (PCS) patients, what experiences the therapist had treating PCS patients, and what resources were being provided for PCS patients. The needs assessment survey for this projects aligns with the purpose of survey research (Stein, Rice, & Cutler, 2013). The survey included a self-developed ten item questionnaire. The DCE student created the survey to identify five topic areas: services provided for PCS patients at INBIC, advanced training on PCS received by staff, each members understanding of the services provided by other disciplines, resources provided for PCS patients, and staff perceptions on where there is a need to advocate for PCS patients. The DCE student distributed the survey via email to three occupational therapists, two speech therapists, two physical therapists, one case manager, and Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 13 one clinical neuropsychologist at INBIC. Eight of the nine individuals that received the survey, completed the survey. The DCE student and site mentor agreed the sample size was large enough to be generalized for the staff at INBIC. Needs Assessment Results Seven of the eight participants reported having experience treating PCS patients (See Appendix A). Confidence was measured on an individuals subjective rating using a one to ten scale. Therapy staff reported a median of seven on a ten point likert scale when assessing confidence. When asked if staff received advanced training, having the ability to choose more than one answer, 62.5% of the participants reported receiving education from a staff member at the facility, 25% completed a web based course, 25% have attended a conference on concussion rehabilitation, and 25% have attended a course specialized in concussion rehabilitation. When asked to rate the participants understanding of the services offered outside their discipline, 62.5% reported having a great understanding of the services offered by other disciplines, and 37.5% reported having an okay understanding of the services offered by other disciplines. The next portion of the needs assessment was focused on the resources provided for patients diagnosed with PCS. When asked how often the staff members provided resources for patients, 37.5% reported for every patient, 50% reported often providing resources, and 12.5% reported sometimes providing resources. When asked what resources they are most often providing with the option to choose more than one answer, 25% reported providing information about their profession, 75% reported providing information regarding the patients diagnoses, 75% reported providing resources on home modifications and accommodative strategies. Eighty-seven and a half percent reported providing a home exercise program, one participant subjectively reported providing resources through a facts about concussions booklet. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 14 Therapists were then asked if there were resources currently not provided that they would like the facility to have. Staff were provided with a yes or no option and an open comment section in which they could describe the resources desired. Eighty-seven and a half percent reported there are resources they would like the facility to have. These included: additional assessment tools, patient/family education information on sleep management and stress management, a concussion protocol, and resources for manual therapy. The final portion of the needs assessment focused on if the staff believed there was a need to advocate for individuals with PCS and where. Staff were provided with a yes or no option and an open comment section to describe where advocacy may occur. One-hundred percent of the staff reported that yes there is a need to advocate. Areas included, practitioners, primary care physicians, emergency departments, employers, and schools (See Appendix A). The data from the needs assessment identified how treatment for individuals diagnosed with PCS can be enhanced at INBIC. Staff identified the lack of evidence based resources at the site for patients diagnosed with PCS. Research shows the diagnoses of concussions and mTBI is based on subjective information for the majority of patients (Cooksley et al, 2018). As such, many individuals who suffer mTBI may not seek medical treatment, and consequently not receive the appropriate education and treatment they need (Cooksley et al, 2018). Providing education to patients and family members is one of the first steps in providing treatment for patients diagnosed with PCS (Ontario Neurotrauma Foundation, 2018). With many of the therapist on staff at INBIC providing treatment to patients diagnosed with PCS the need for evidence-based resources is crucial for this population to receive the most effective and beneficial care. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 15 Implementation Resource Development Following the needs assessment, implementation of the DCE project involved four main components: 1) completing continuing education courses with a focus in PCS, 2) observing occupational therapists, speech therapists, and physical therapists at the facility, 3) creating patient resources, 4) providing an evidence based presentation to the staff. The DCE student identified two continuing education courses that allowed him to gain advanced knowledge in PCS rehabilitation. The courses were completed by the DCE student during the third and fourth week of the DCE. The first course completed was: Mild Traumatic Brain Injury: Acute Management, Differential Diagnoses, Treatment, and Rehabilitation, taught by Dr. Grant Iverson. The course outlined the identification and diagnoses of mTBI and PCS, and discussed the current evidence for treatment and rehabilitation for mTBI and PCS. The second course completed was: POST CONCUSSION SYNDROME SERIES: A Four Part Series, taught by Christina Finn MS, OTR/L. The course identified the impact a concussion may have on the visual, vestibular, and sensory system, provided an overview of treatment and rehabilitation, and discussed strategies to return to school and work. The DCE student utilized the information from these courses to assist with the development of evidence based resources for the facility. Beginning the third week of the DCE, observation time was scheduled via email with various therapist at the facility. Observation was completed throughout the first nine weeks of the capstone experience. The DCE student observed two occupational therapists, one specialized in vision rehabilitation, one physical therapist with advanced training in vestibular rehabilitation, and two speech therapists. Also, the DCE student observed rounds to gain a better understanding Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 16 of each discipline's role at the facility. The observation time allowed the student to gain further insight into the barriers therapists face treating patients with PCS, the challenges patients with PCS have, and the knowledge on how to assist with resource development. This time also allowed the DCE student to network and build rapport with the therapists at the facility and to discover additional resources being provided to patients diagnosed with PCS. Resources created for the facility took approximately 4 weeks to complete. The two continuing education courses and the concussion guidelines, created by the Ontario Neurotrauma Foundation, were utilized to ensure the resources created were supported by the most up to date literature. In total seven resources were created including:1) Facts about concussions, 2) vision, 3) vestibular, 4) cognitive, 5) healthy sleep/stress, 6) return to school, 7) return to work, 8) work ergonomics. An example resource can be seen in Appendix C. The resources were stored on the facilities online drive, and also kept in a binder held by the therapy manager. The binder held by the therapy manager also included: current assessment tools being used to evaluate patients diagnosed with PCS and the guidelines for diagnoses and treatment provided by the Ontario Neurotrauma Foundation. The final component of implementation consisted of providing an evidence based presentation to the facility at INBIC. All members who completed the needs assessment were present at the final presentation. The presentation included: an overview of the literature collected by the DCE student, discussion of the continuing education courses completed, instructions on how best to utilize the resources created, and an overview of the current assessment tools being used to evaluate patients diagnoses with PCS. At this presentation postpresentation surveys (see Appendix B) were passed out to be completed by each staff member. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 17 The surveys provided feedback on the staffs satisfaction with each resource that was created by the DCE student and recommendations for improvement. Staff Development and Leadership The literature review showed evidence of a lack of awareness in the general population that concussions can be treated (Kontos & Collins, 2018). By increasing the amount of resources available on PCS to the facility, the presentation resulted in staff development. The needs assessment was utilized to identify resources the therapists believed would be most beneficial to the facility. The presentation and handouts provided allowed the therapists to better treat individuals diagnosed with PCS.The resources provided will be held by the therapy manager at the facility and will be immediately available for all staff members to use and future staff members. The DCE required self-direct learning throughout the entire process. The DCE student assumed leadership in identifying goals, completing continuing education courses, developing resources for the facility, and creating an evidence based presentation. The therapy manager at the facility also played a crucial role in the DCE student accomplishing their goals. Communication became a crucial component of the DCE process. Communicating with the therapist was vital in ensuring the resources developed met the facilitys needs. Meetings were held with the therapy manager every week to review and discuss changes that could be made to the resources. The consistent interaction between the DCE student and therapy manager allowed for feedback that led to changes being made when necessary. Organization was also a critical part of the DCE. The DCE student was responsible for developing a schedule that would allow for all goals to be accomplished in a timely manner. During the weekly meetings, the DCE student identified goals that were accomplished and addressed what goals would be completed Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 18 next. The growth of leadership skills throughout the DEC provided for a confident presentation of materials to facility staff. Discontinuation and Outcome The DCE student developed an outcome tool to measure the satisfaction and efficiency of the resources developed for the staff at the facility. The outcome measure was an eight question survey with a Likert scale to measure the level of satisfaction (See Appendix B). Therapists who attended the presentation received the satisfaction survey after the DCE students evidenced based presentation on PCS. Therapists were given one week to complete the survey. In total 9 surveys were distributed to the case manager, therapy manager, three occupational therapists, two physical therapists, and two speech therapists completed the survey. All surveys were returned to the DCE student when completed by the staff. The outcome measure, (see Appendix B), had therapists rate satisfaction on all eight resources and the PCS binder created by the DCE student. All staff members responded to the nine questions with complete satisfaction for each question, giving a score of 100% satisfaction. To ensure the sustainability of the project, the DCE student provided the resources to staff in two binders and uploaded the resources to INBICs shared drive to ensure the resources would be available at all times. The purpose of the first binder was to provide a background of the literature related to PCS. Forty-one articles were collected and organized into appropriate sections. Sections included: 1) background on mTBI/PCS, 2) systematic reviews on PCS, 3) vision, 4) vestibular, 5) cognition/sleep, 6) vision. All articles were also uploaded to INBICs shared drive. The purpose of the second binder was to provide the Ontario Neurotrauma guidelines for treatment of PCS, relevant assessment tools to use during evaluation, and the resource handouts developed by the DCE student. All resources included in the binder were Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 19 uploaded to INBICs shared drive. The DCE student and the therapy manager collaborated on the organization of the resources on INBICs shared drive to ensure sustainability. The therapy manager will add additional information or complete editing as new evidence becomes available in the future. Any individual who suffers a concussion is at risk for a variety of cognitive, vestibular, visual, or emotional changes. In order for these individuals to recover and return to prior level of function, they must have an understanding of what treatment will look like and what to expect. This capstone allowed the DCE student the opportunity to provide educational resources and ensure that the facility has the most up to date evidence to support rehabilitation for persons who have experienced a concussion in. Overall Learning During the initial stages of the DCE, there were five goals with corresponding objectives identified by the DCE student. To accomplish these five goals, effective communication between the DCE student, site mentor, and staff at the facility was crucial. The first goal was for the DCE student to identify occupational therapys role when working with patients suffering from PCS. The DCE student accomplished this goal by searching current evidence based literature for occupational therapys role in rehabilitation of PCS, using a survey questionnaire with staff at the facility, and completing a continuing education course on PCS taught by an occupational therapist. The second, third, and fourth goal, was centered around the DCE student developing educational handouts for the patients at the facility. Initially the DCE student identified the need for a cognitive, vestibular, and vision handout for the facility. Additional resources were identified after the completion of the needs assessment. As previously mentioned eight handouts Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 20 were developed including:1) facts about concussions, 2) vision, 3) vestibular, 4) cognitive, 5) healthy sleep/stress, 6) return to school, 7) return to work, 8) work ergonomics. The DCE student developed the handouts by observing and collaborating with therapists at the facility, reviewing resources already held at the facility, completing continuing education courses, and adapting information provided by the Ontario Neurotrauma foundation. The final goal for the project, was for the DCE student to present an evidence based presentation to the staff at the facility on PCS. During this presentation the DCE student explained the purpose of his project, and how the needs assessment was utilized to identify what resources would be most beneficial for the facility. The DCE student explained how the resources were developed and what information was utilized during the development. The DCE student answered all questions the staff presented after the completion of the presentation. By answering questions the DCE student strengthens the sustainability of the project. Throughout the DCE project, it was crucial for the DCE student to demonstrate effective leadership skills, and to advocate for occupational therapys role in concussion rehabilitation. The DCE student had the opportunity to collaborate with a variety of practitioners with various backgrounds. This allowed the DCE student to continuously advocate for occupational therapys role, and to gain insight on the unique scope of practice physical and speech therapists possess. During the final presentation the DCE student demonstrated self-confidence that the resources being provided were at the highest quality. By accomplishing the objectives set at the start of the DCE, the DCE student gained knowledge of what initially needs to be accomplished when designing a treatment protocol for a specific population. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 21 Conclusion As a result of the DCE project, the staff at INBIC now has a resource which provides the most up-to-date information on concussion rehabilitation as well as up-to-date educational handouts for patients recovering from PCS or mTBI. All goals and objectives the DCE student had at the start of the experience were achieved. The DCE student gained valuable leadership skills and also had the opportunity to advocate for his profession throughout the DCE. The therapists at the facility reported a One-hundred percent satisfaction level with the resources provided by the DCE student. The resources will continue to be updated through editing by the site manager at the facility. Providing patients diagnosed with PCS with educational resources during the initial stages of recovery is a great way to ensure a more successful recovery. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 22 Appendix A Results of Needs Assessment 1. Please list your job title and the population you serve at RHI Northwest Brain Injury Center. Occupational therapist 1: Program Facilitator vision. day inpatient vision pts. day out patient. Majority neuro deficits, some low vision. Occupational therapist 2: Adults 16-? TBI, NTBI, stroke, PD, MS, other neuro disorders Occupational therapist 3: Stroke TBI, NTBI Speech therapist 1: Brain injury and stroke Speech therapist 2: BI, CVA, BrainCA, Encephalopathy, PCS Physical therapist: brain injury + vestibular Case Manager: TBI, CVA, NTBI, PCS Clinical Neuropsychologist: I serve patients with TBI, concussions, and other acquired brain injuries. I also serve their family members/caregivers 2. During your time at the Neurorehabilitation center have you had any experiences working with individuals diagnosed with post-concussion syndrome (PCS)? If so, please provide a brief description of your experiences. Occupational therapist 1: Yes, many have visual deficits dealing with eye strain, fatigue, double vision, convergence insufficiency. I give out a lot of adaptations and strategies to reduce eye strain. Refer to eye care physician functional visual talks. Occupational therapist 2: Yes, but very little. The few pts Ive seen for OT have not been able to tolerate my sessions due to pain or psych issues. Occupational therapist 3: no Speech therapist 1: Yes, evaluation is a combination of clinical interview, patient report, standardized assessment. Goals focus on strategies and self-monitoring tools. Speech therapist 2: Yes, evaluation treatment, education and training of strategies Physical therapist: Yes- generally treating these individuals from a vestibular standpoint Case Manager: Yes, it has been my experience that the majority PCS patients have a significant psych history Clinical neuropsychologist: Yes. I perform diagnostic evaluations to detect if they have problems consistent with PCS, provide appropriate recommendations for obtaining evidence based treatments, and used to do a lot of individual psychotherapy with these patients. 3. How would you rate your confidence level when working with individuals diagnosed with PCS? (1- no confidence, 10- extremely confident) Occupational therapist 1: 6/10- Each one can be so different Occupational therapist 2: 5 Occupational therapist 3: 7/10 Speech therapist 1: 9 Speech therapist 2: 7 Physical therapist: 7 Case Manager: 7 Clinical Neuropsychologist: 8 Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 23 Appendix A (Continued) 4. Have you completed any advanced training in terms of working with individuals diagnosed with PCS? If you select other, please provide a brief description of the training completed. a. Web based course (2) b. Attended a conference on concussion rehabilitation (2) c. Attended a course specialized in concussion rehabilitation (2) d. None (0) e. Other (5) occupational therapist 2: Training from clinical neuropsychologist on staff. occupational therapist 3: CBIS training speech therapist 1: Education provided by clinic staff speech therapist 2: Training from clinical neuropsychologist on staff case manager: Training from clinical neuropsychologist on staff 5. If you have not completed advanced training in terms of working with this population, what type of training would you find most beneficial? If you select other, please provide a brief description of the training desired. a. Web based course (1) b. Attended a conference on concussion rehabilitation (2) c. Attended a course specialized in concussion rehabilitation (4) d. None (0) e. Other (3) occupational therapist 2: Continued training from clinical neuropsychologist speech therapist 2: Continued training from clinical neuropsychologist clinical neuropsychologist: More education regarding recent studies that have looked at PCS recovery and things that can improve headaches, fatigue, dizziness mental fog, and cognitive overload, and more exercise tolerance strategies. Also want to learn more about the cumulative effect of multiple concussions. 6. How would you rate your understanding of the services offered by staff outside of your discipline? a. I have a great understanding of the services offered by other disciplines (5) b. I have an okay understanding of the services offered by other disciplines (3) c. I know very little about the services offered by other disciplines (0) clinical neuropsychologist: Not always sure what the staff here at INBIC feel equipped or competent to treat. Unclear about our staff training and specialization. 7. How often do you provide resources to your patients/ patients families during individual treatment sessions? a. For every patient (3) b. Often (4) c. Sometimes (1) d. Rarely (0) Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 24 Appendix A (Continued) 8. If you do provided resources, which resources do you provided the most. Select all that apply. Feel free to provide a description if you feel your resource does not fit into one of the descriptions provided below. a. Practitioner information (2) b. Information regarding a patients diagnoses (6) c. Home modification/accommodation strategies (6) d. Home exercise program (7) e. Other (3) speech therapist 2: Benefits of referrals to other disciplines case manager: Facts about concussion booklet clinical neuropsychologist: Psychological strategies, Nutrition, sleep, ect. 9. Are there resources for this population that you would like the facility to have that they currently do not have? If yes, please explain a. Yes (7) b. No (1) occupational therapist 1: More resources on healthy sleep occupational therapist 2: Assessment tools for post-concussion patients occupational therapist 3: probably speech therapist 1: Additional printer information for patients and family education. physical therapist 1: Information on stress management, and prognosis case manager: Yes, an actual PCS protocol and what the patients can expect about the recovery process. The referring physicians never give the patients any information on what to expect. clinical neuropsychologist: Yes, do we have Neurocomm here? Also dry needling and more training in manual therapies for headache management has been used and found to be beneficial in treating this population. Otherwise I have been referring out. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 25 Appendix A (Continued) 10. Do you believe there is a need to advocate for patients experiencing post-concussion like symptoms outside of RHI Northwest Brain Injury Center? If yes, please explain where and why? a. Yes (8) b. No (0) occupational therapist 1: This is not a very recognized diagnoses and is difficult to diagnose, which I believe leaves lots of people dealing without services they need and could benefit from. occupational therapist 2: Yes, because they get labeled as fakers and malingerers. More health care workers need education and resources in order to better treat PCS patients. occupational therapist 3: Yes, due to limited practitioner knowledge speech therapist 1: yes, primary care and MDs speech therapist 2: Increased awareness of PCS and available treatment, support, and resources physical therapist 1: Emergency department would be a good place to start, emergency doctors especially case manager: Yes, because most of these patients are still trying to work or missing due to PCS. Community needs more education about PCS as well as employers and their families. clinical neuropsychologist: Yes, employers, school, and family members need greater education to help support the patient, so the symptoms do not become persistent. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE Appendix B Outcome Measure 1= not satisfied at all, 5= completely satisfied 1. Please rate your satisfaction with Facts about Concussion Resource 1 2 3 4 5 2. Please rate your satisfaction with the Vision Resource 1 2 3 4 5 3. Please rate your satisfaction with the Vestibular Resource 1 2 3 4 5 4. Please rate your satisfaction with the Cognition Resource 1 2 3 4 5 5. Please rate your satisfaction with the Healthy Sleep/Fatigue Resource. 1 2 3 4 5 6. Please rate your satisfaction with the Return to School Resource. 1 2 3 4 5 7. Please rate your satisfaction with the Return to Work Resource. 1 2 3 4 5 8. Please rate your satisfaction with the Work Ergonomics Resource. 1 2 3 4 5 9. Please rate your satisfaction with PCS Binder. 1 2 3 4 5 Appendix C Example Resource 26 Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE Appendix C Continued Example Resource 27 Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE Appendix C Example Resource 28 Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 29 References Acord-Vira, A., Davis, D., Wheeler, S., & Cannoy, A. (2018). Occupational therapy's role in return to work after a concussion. O Practice, 3(2), 31-33. American Occupational Therapy Association. (2013). Cognition, cognitive rehabilitation, and occupational performance. American Journal of Occupational Therapy, 67 S9-S31. http://dx.doi.org/10.5014/ajot.2010.64S30 Bonnel, W. & Smith, K.V. (2018). Proposal writing for clinical nursing and DNP projects, Second edition. New York: Springer Publishing Company. Brayton-Chung, A., Finch, N., & Keilty, K. (2016). The role of occupational therapy in concussion rehabilitation. Ot Practice, 21(21), 8-12. Broglio, S. P., Collins, M. W., Williams, R. M., Mucha, A., & Kontos, A. P. (2015). Current and emerging rehabilitation for concussion: a review of the evidence. Clinics in sports medicine, 34(2), 213-231. Center for Disease Control and Prevention. (2016). Traumatic brain injury & concussion. Retrieved from http://www.cdc.gov/traumaticbraininjury/index.html Cogan, A. M., Huang, J., & Philip, J. (2018). Military service member perspectives about occupational therapy treatment in a military concussion clinic. OTJR: occupation, participation and health, 1539449218813849. Cooksely, R., Maguire, E., Lannin, N. A., Unsworth, C. A., Farquhar, M., Galea, C., & Schmidt, J. (2018). Persistent symptoms and activity changes three months after mild traumatic brain injury. Australian occupational therapy journal, 65(3), 168-175. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE DiFazio, M., Silverberg, N. D., Kirkwood, M. W., Bernier, R., & Iverson, G. L. (2016). Prolonged activity restriction after concussion: are we worsening outcomes?. Clinical pediatrics, 55(5), 443-451. Gallaway, M., Scheiman, M., & Mitchell, G. L. (2017). Vision therapy for post-concussion vision disorders. Optometry and vision science, 94(1), 68-73. Johansson, B., Berglund, P., & Rnnbck, L. (2009). Mental fatigue and impaired information processing after mild and moderate traumatic brain injury. Brain injury, 23(13-14), 10271040. Kontos, A., Collins, M., (2018). Concussion: A clinical profile approach to assessment and treatment. Washington, DC: American Psychological Association. (2018). Kozlowski, K. F., Graham, J., Leddy, J. J., Devinney-Boymel, L., & Willer, B. S. (2013). Exercise intolerance in individuals with postconcussion syndrome. Journal of athletic training, 48(5), 627-635. Leddy, J. J., Baker, J. G., & Willer, B. (2016). Active rehabilitation of concussion and postconcussion syndrome. Physical Medicine and Rehabilitation Clinics, 27(2), 437-454. Leddy, J., Hinds, A., Sirica, D., & Willer, B. (2016). The role of controlled exercise in concussion management. PM&R, 8, S91-S100. Losoi, H., Silverberg, N. D., Wljas, M., Turunen, S., Rosti-Otajrvi, E., Helminen, M., & Iverson, G. L. (2016). Recovery from mild traumatic brain injury in previously healthy adults. Journal of neurotrauma, 33(8), 766-776. 30 Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 31 McCrory, P., Meeuwisse, W. H., Aubry, M., Cantu, R. C., Dvorak, J., Echemendia, R. J., ... & Sills, A. (2013). Consensus statement on concussion in sportthe 4th International Conference on Concussion in Sport held in Zurich, November 2012. PM&R, 5(4), 255-279. Moore, D., Jaffee, M., Helmick, K., & Members, O. (2010). Cognitive rehabilitation for military personnel with mild traumatic brain injury and chronic post-concussional disorder: Results of april 2009 consensus conference. Neurorehabilitation, 26(3), 239-255. Ontario Neurotrauma Foundation. (2018). Guidelines for Concussion/mild Traumatic Brain Injury & Persistent Symptoms: For Adults (18+ Years of Age). Ontario Neurotrauma Foundation. Pearce, K. L., Sufrinko, A., Lau, B. C., Henry, L., Collins, M. W., & Kontos, A. P. (2015). Near point of convergence after a sport-related concussion: measurement reliability and relationship to neurocognitive impairment and symptoms. The American journal of sports medicine, 43(12), 3055-3061. Reed, N. P., & Lee, K. (2012). Concussion in hockey: Taking an occupational perspective on risk in sports. Canadian journal of occupational therapy, 79(1), 5-6. Snell, D. L., Macleod, A. S., & Anderson, T. (2016). Post-concussion syndrome after a mild traumatic brain injury: A minefield for clinical practice. Journal of behavioral and brain science, 6(06), 227. Stroth, S., Hille, K., Spitzer, M., & Reinhardt, R. (2009). Aerobic endurance exercise benefits memory and affect in young adults. Neuropsychological Rehabilitation, 19(2), 223-243. Silverberg, N. D., Panenka, W. J., & Iverson, G. L. (2018). Work productivity loss after mild traumatic brain injury. Archives of physical medicine and rehabilitation, 99(2), 250-256. Running head: INTERDICIPLINARY APPROACH TO CONCUSSION CARE 32 Sullivan, K. A., Berndt, S. L., Edmed, S. L., Smith, S. S., & Allan, A. C. (2016). Poor sleep predicts subacute postconcussion symptoms following mild traumatic brain injury. Applied Neuropsychology: Adult, 23(6), 426-435. 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 Thomas, D. G., Apps, J. N., Hoffmann, R. G., McCrea, M., & Hammeke, T. (2015). Benefits of strict rest after acute concussion: a randomized controlled trial. Pediatrics, 135(2), 213-223. Wljas, M., Iverson, G. L., Lange, R. T., Hakulinen, U., Dastidar, P., Huhtala, H., & hman, J. (2015). A prospective biopsychosocial study of the persistent post-concussion symptoms following mild traumatic brain injury. Journal of neurotrauma, 32(8), 534-547. Wickwire, E. M., Williams, S. G., Roth, T., Capaldi, V. F., Jaffe, M., Moline, M., & Pazdan, R. M. (2016). Sleep, sleep disorder, and mild traumatic brain injury. What we know and what we need to know: findings from a national working group. Neurotherapeutics, 13(2), 403417.  ...

... Determining Content Validity of My Safe and Sound Plan, A Fall Risk Self-Assessment Workbook Kathryn A. Boomershine, Rachel M. Gramman, Clare E. Schirmer, and Jerica R. Schomber 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: Brenda S. Howard, DHSc, OTR Running head: DETERMINING CONTENT VALIDITY 1 A Research Project Entitled Determining Content Validity of My Safe and Sound Plan, A Fall Risk Self-Assessment Workbook 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 Kathryn A. Boomershine, Rachel M. Gramman, Clare E. Schirmer, and Jerica R. Schomber Approved by: 12/14/2018 Research Advisor (1st Reader) 2nd Reader Date Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTD, MS, OTR Chair, School of Occupational Therapy Date 2 DETERMINING CONTENT VALIDITY Abstract Current falls prevention interventions vary in methodology and effectiveness, and there is need for consistent intervention in the clinical setting. The purpose of this study was to determine the content validity of the My Safe and Sound Plan workbook (Howard, 2016), a selfassessment for communicating evidence-based fall risk factors to clients. Three occupational therapists and two physical therapists in the outpatient setting completed surveys regarding the representativeness and clarity of workbook items. Results demonstrated interrater agreement for all representativeness items, and the interrater agreement for clarity items was .862. Two clarity items, Exercises for Fall Prevention: Endurance and Exercises for Fall Prevention: Stretching, did not demonstrate interrater agreement. The content validity index for the workbook was 1.00, indicating that items were representative of what is known about fall risks. Results indicated this tool clearly addressed material relevant to decreasing fall risk factors and would be appropriate for use in the outpatient setting. Member checking and qualitative responses were used to make revisions to the workbook. Implications for practice include respecting the agency and individuality of clients while addressing fall risk factors with clients. Utilizing a client-centered self-assessment may result in clients being more likely to follow through with recommendations. Keywords: accidental falls, fall risk, content validity, self-assessment 3 DETERMINING CONTENT VALIDITY Acknowledgements We would like to acknowledge our participating hospitals, Columbus Regional Health and Community Health Network. We would also like to acknowledge Janette Hensleigh, an OT student, for her initial contributions to our project and Beth Ann Walker, our second reader. 4 DETERMINING CONTENT VALIDITY Determining Content Validity of My Safe and Sound Plan, a Fall Risk Self-Assessment Workbook Falls have been the leading cause of injuries among adults aged 65 and older (Centers for Disease Control and Prevention [CDC], 2015). Annually, over 25,000 older adults in the United States have died from injuries sustained during falling, and more than 800,000 have been hospitalized (CDC, 2015, 2016b; National Council on Aging [NCOA], n.d.). As of 2013, costs associated with falls were estimated to be $34 billion (NCOA, n.d.), and impact on the individual extended beyond financial loss to impact physical and mental health as well (CDC, 2015; CDC, 2016a, NCOA, n.d.). The problem of fall risks, and the need to address falls prevention, has been an area addressed by the interprofessional team, including occupational and physical therapists, using a variety of approaches (MacKenzie, Clemson, & Roberts, 2013; Peterson, Finlayson, Elliott, Painter, & Clemson, 2012). In order to accurately assess fall risk factors, one must first identify the risk factors that the literature notes as the most relevant. Investigators reviewed both extrinsic and intrinsic fall risk factors that have been identified by researchers or proposed by older adults themselves. Extrinsic risk factors have been defined as those that occur outside of an individual and are linked to the individuals environment (Maruf, Muonwe, & Odetunde, 2016). Intrinsic risk factors were defined as those that originate within the individual and may increase his or her likelihood of falling (Chippendale & Boltz, 2015). Fall Risk Factors Identified by Experts Extrinsic Risk Factors Physical environment. Lighting. Dim lighting has been associated with an increased risk of falling (Figueiro, 5 DETERMINING CONTENT VALIDITY Plitnick, Rea, Gras, & Rea, 2011; Huang, 2004). Figueiro et al. (2011) suggested that a lack of perceptual cues when walking in poor lighting may be responsible. When comparing a group at high risk for falls with a group at low risk for falls, lighting from ceiling fixtures was related to more consistent stepping patterns and greater velocity than lighting provided from a night light alone (Figueiro et al., 2011). Flooring. Cluttered pathways, especially near the front entryway, and the addition of carpets and rugs to walkways have been associated with increased fall risk (Huang, 2004; Rosen, Mack, & Noonan, 2013). Specifically, researchers using retrospective data analysis found that older adults commonly experienced falls in places where carpets or rugs had gotten wet or where the flooring transitioned from having a carpet or rug to not having one (Rosen et al., 2013). Nonetheless, falling onto carpeted wooden flooring was associated with fewer sustained injuries (Simpson, Lamb, Roberts, Gardner, & Evans, 2004). Social environment. The presence of and interactions with other people can impact fall risk in older adults (Chippendale & Boltz, 2015; Maruf et al., 2016). Older adults reported feeling safer venturing out in their neighborhoods when there were other people present, and for those participants who had experienced a fall outdoors in their neighborhoods, the help received from community members was appreciated (Chippendale & Boltz, 2015). Conversely, limiting social participation to less than twice per week was associated with increased fall risk (Maruf et al., 2016). Footwear. Different types of footwear have had varying impacts on balance and gait features, which has, in turn, impacted fall risk. Observing walking patterns of older adult females, researchers compared the effects of wearing slippers, wearing well-fitted footwear, and going barefoot and concluded that well-fitted footwear allowed for increased velocity and foot 6 DETERMINING CONTENT VALIDITY clearance and decreased the chances of the heel slipping out of the shoe as compared to being barefoot or wearing slippers (Davis, Galna, Murphy, Williams, & Haines, 2016). Intrinsic Risk Factors Medical conditions. Chronic pain, diabetes, and depression, most notably cognitive depressive symptoms, have been linked to increased risk of falling (Eggermont, Penninx, Jones, & Leveille, 2012; Nelson, Dufraux, & Cook, 2007; Roman de Mettelinge, Cambier, Calders, Van Den Noortgate, & Delbaere, 2013; Stubbs, Eggermont, Patchay, & Schofield, 2015). Those experiencing chronic pain at multiple sites within the body were at the highest risk for recurrent falls compared to those individuals not experiencing chronic pain (Stubbs, Eggermont, et al., 2015). For individuals with diabetes, researchers have suggested that additional physical and mental complications associated with the disease may have contributed to an increased risk of falling (Roman de Mettelinge et al., 2013). As physical risk factors accumulate, it is understandable that fall risk would be heightened. Muscle weakness and reduced functional mobility. Multiple researchers have examined the impact of muscle weakness and mobility in relation to falls. In one study, muscle density in the lower legs was inversely related to fall risk (Frank-Wilson et al., 2016). In another study, decreased lower extremity muscle strength was correlated with older adults difficulties in performing certain movements, specifically stooping, crouching, or kneeling, which was simultaneously linked to decreased functional performance (Hernandez, Goldberg, & Alexander, 2010, p. 68). Examining another movement, Ward et al. (2015) found that those individuals who took the longest time to stand up from being seated in a chair were at a significantly greater risk for falling. Vision. Lord (2006) provided a literature review of visual risk factors that have been 7 DETERMINING CONTENT VALIDITY related to falling, which included contrast sensitivity and depth perception. However, researchers examining poor vision and limb functioning have suggested that visual impairment may not be as great of a fall risk as many people think (Steinman, Pynoos, & Nguyen, 2009). Poor vision was predictive of increased fall risk only until data for limb functioning was added to the analysis in the study conducted by Steinman et al. (2009), which led researchers to suggest that limb function was a stronger risk factor. Researchers concluded that, in order to remain active and maintain limb functioning, individuals would need visual capabilities or a modified exercise routine (Steinman et al., 2009). Vision was not completely dismissed as a risk factor. Medications. Multiple types of medications have been associated with increased fall risk. Benzodiazepines taken alone or benzodiazepines and antidepressants, when taken as part of polypharmacy (taking more than four medications at once), were associated with increased fall risk (Richardson, Bennett, & Kenny, 2015). Though Richardson, Bennett, and Kenny (2015) found no correlation between antihypertensives and fall risk, Shimbo et al. (2016) found a correlation between beginning a new antihypertensive medication or intensifying the use of antihypertensive medication and short-term increased fall risk. Analyzing the same data set as Richardson, Bennett, and Kenny (2015), researchers additionally found that, for men only, use of medications with high anticholinergic activity was associated with increased risk for injurious falls (Richardson, Bennett, Maidment et al., 2015). Furthermore, in regard to sleep medications, researchers found that individuals taking sleep medication and experiencing poor sleep quality were at a significantly higher risk for falling when compared to a group of individuals who experienced quality sleep without the use of medications (Min, Kirkwood, Mays, & Slattum, 2016). However, participants who slept well with the use of medications and the group that reported poor sleep without medications showed no significant increased fall risk; it appears that 8 DETERMINING CONTENT VALIDITY the combination of poor sleep and the use of sleep medications produces the greatest risk for falls rather than sleep medications alone (Min et al., 2016). When considering these studies together, it appears that some, but not all medications, can increase fall risk for certain individuals. Inactivity. Maruf et al. (2016) reported that fallers tended to be over the age of 65 and participated in less physical activity as compared to a group of non-fallers. In support of this finding, researchers of another study found that less walking was associated with a greater number of falls (Qin & Baccaglini, 2016). Considering which participants had reported multiple falls in the previous year, researchers found that participants who walked less than 10 minutes per week were more likely to report multiple falls as compared to those participants who reported walking a minimum of 30 minutes each week (Qin & Baccaglini, 2016). Falling resulting from such inactivity may be explained in part by findings from Sakurai et al. (2014), who found that older adults who spent less time outdoors, operationalized as going out once every 2-3 days or once a week or less as compared to going out at least once a day, were more likely to overestimate their ability on Step-Over Tests. For those participants classified as fallers, executive function was also related to their overestimations (Sakurai et al., 2014). It may be that inactivity in older adults, combined with cognitive factors, heightens the risk of falling. Although it may then seem advantageous to encourage walking in older adults, Okubo et al. (2015) found that walking significantly increased the fall risk for a group of individuals who already had multiple risk factors for falling. Before increasing activity, one should consider the co-occurrence of other risk factors. Fear of Falling. Auais et al. (2016) analyzed data from the International Mobility in Aging Study (IMIAS) and found that, for participants in five different community settings across four countries, fear of falling (FOF) differed in distribution based on location but was 9 DETERMINING CONTENT VALIDITY significantly correlated to decreased mobility for all sites. In another study, Huang (2004) also found that FOF led to avoidance of some activities by a group of fallers. Though neither study directly measured FOF as an independent fall risk factor, both found correlations between FOF and other risk factors that have been reviewed above, including reduced functional mobility and inactivity, respectively. Fall Risk Factors Identified by Older Adults Aside from those identified by researchers, older adults have identified additional fall risk factors. These have included curbs as a fall risk factor due to the lack of having a railing for support (Chippendale & Boltz, 2015; Vivrette, Rubenstein, Martin, Josephson, & Kramer, 2011). Along with weather-related conditions such as the presence of snow, ice, and puddles, older adults also perceived traffic to be a risk factor when walking in their neighborhoods, as they feared not having time to safely cross the street or being unable to see oncoming traffic in time (Chippendale & Boltz, 2015). For some older adults, these risk factors were significant enough, or produced enough fear, to limit their physical activity (Chippendale & Boltz, 2015). Current Falls Prevention Interventions There are currently interventions in place that seek to lower the incidence of falls in older adults. Researchers have compiled credible information related to education-based, exercisebased, and multidisciplinary falls prevention interventions, yet the common concern raised on varying intervention types has been the large inconsistency of the components of the intervention (Oliver, Daly, Martin, & McMurdo, 2004). The urgency to find the optimal method to prevent falls has become a top priority for healthcare professionals caring for the older adult population because of the adverse health outcomes that result from a fall (Johnson, Kelly, Siric, Tran, & Overs, 2015). 10 DETERMINING CONTENT VALIDITY Multimedia Interventions Patient falls prevention education in the form of multimedia programs (written and video materials, follow up discussion(s) with care providers) has been utilized to teach older adults about the risks associated with falling as well as preventative measures to take to prevent falls (Haines et al., 2011; Hill, Etherton-Beer, & Haines, 2013; Williams & Hadler, 2015). Williams and Hadler (2015) concluded that individualized multimedia patient education in combination with staff training effectively reduced the rate of falls, injuries related to falls, and the number of patients who fell compared to usual falls prevention care. The overarching themes that emerged from literature regarding the educational approach for the prevention of falls in the older adult population were the feasibility, cost-effectiveness, and the positive response from the targeted population (Haines et al., 2011; Hill et al., 2013; Williams & Hadler, 2015). Exercise Interventions Home and group-based falls prevention exercise programs have increased progressive balance, muscle strength, and overall stability, which ultimately all helped to stimulate functionality in the older adult population (Kyrdalen, Moen, Roysland, & Helbostad, 2014). Though investigators have observed these benefits, older adults have not always recognized exercise as a falls prevention method. Lam, Liamputtong, and Hill (2015) found that older adults did not view exercise as an impactful activity for preventing falls, but instead only recognized the other benefits that exercise offers. For example, motivating factors that contributed to the adherence of an exercise program by older adults were the possibility of staying independent longer, upholding current health, and improving physical balance and the ability to walk (DeGroot & Fagerstrm, 2011). Based on this finding, one could employ a number of techniques to increase adherence to an exercise-based intervention. 11 DETERMINING CONTENT VALIDITY Personal exercise intervention. Robinson, Newton, Jones, and Dawson (2014) found that self-management support and a motivating enabler promoted uptake and adherence of an exercise-based falls prevention program, and this may be linked to the increased self-confidence that education from a therapist can provide to an older adult (DeGroot & Fagerstrm, 2011). One potential way to motivate a client has been for the therapist to individualize the intervention. Campbell, MacAuley, McCrum, and Evans (2001) found personal goal setting to be one of the most influential motivational factors that led to behavior changes in older adults. In a study examining various interventions, the need to set specific, relevant goals with appropriate measures emerged (Haas, Mason, & Haines, 2014). If the goals were appropriately set and measured using criteria set out by the researchers, they were usually achieved (Haas, Mason, & Haines, 2014). Therefore, a personalized approach may increase client receptivity, and Child et al. (2012) found that clients were more likely to accept private interventions before public ones. Group exercise intervention. Group settings have also been effective exercise interventions, and researchers have concluded that individuals should be offered a choice regarding the type of exercise in which they participate and whether the exercise is in a group or individual setting (Child et al., 2012). Walker, Porock, and Timmons (2011) found that most participants in a falls prevention program were passive during communication and only listened to the practitioners instructions without participating in the dialog. However, multiple advantages have also been identified. A group setting offered a social environment, one in which encouragement from a support system, such as family members and friends, motivated the older adults to participate (Bennett & Winters-Stone, 2011; DeGroot & Fagerstrom, 2011). A group setting also offered an alternative to home-based exercise programs, in which Yardley et al. (2006) found that only 36.4% of older adults indicated they would consistently partake. 12 DETERMINING CONTENT VALIDITY Consistent with Yardley et al. (2006), Kyrdalen et al. (2014) found than an exercise-based falls prevention approach was more effectual in a group setting rather than individually, and this may have been due, in part, to older adults preference to not be the only individual required to exercise (Bell et al., 2014). Overall, multiple exercise programs have been utilized as a method of falls prevention intervention, but the way that the exercise program was presented has had potential to affect the older adults willingness to participate. Multidisciplinary Interventions Multidisciplinary interventions have integrated education, exercise, environmental modification suggestions, and suggested behavioral changes to prevent falls (Hill-Westmoreland, Soeken, & Spellbring, 2002). These approaches have consistently displayed promising results to effectively prevent falls in the older adult population (Hill-Westmoreland et al., 2002; Stubbs, Brefka, & Denkinger, 2015) and have been time-efficient, informative, and effective in reducing the number of falls in the targeted population. A multidisciplinary falls prevention approach incorporates various disciplines that make up the front line of preventing falls in the older adult population. At-risk individuals may potentially encounter general practitioners, home care and hospital nurses, physiotherapists, and OTs (Amacher et al., 2016). There is evidence that multifactorial interventions facilitated by health professionals with expertise in geriatric treatment have been most effective in reducing falls (Gillespie & Robertson, 2009). These multifactorial interventions have examined various aspects of the client and environment and addressed more than one aspect in order to ensure the best outcome for the client. Compliance of the staff conducting the falls prevention intervention has been a crucial element of a successful approach (Jamtvedt, Young, Kristoffersen, O'Brien, & Oxman, 2006). 13 DETERMINING CONTENT VALIDITY Ohde et al. (2012) assessed the results of a multidisciplinary quality improvement (QI) activity that displayed a significant decrease in the number of falls per patient per year and a 9.4% increase in staff compliance that played a large contributing factor. Amacher et al. (2016) investigated the benefits and barriers of a multidisciplinary falls prevention approach from the perspective of the involved seniors, general practitioners, home care nurses, and physiotherapists. The main benefits that were perceived included satisfaction with information and organization, expenditure of time for project participation, insight into risk of falling, motivation and self-efficacy in seniors, and the potential to prevent falls (Amacher et al., 2016). The health professionals conducting the intervention achieved the desired outcomes most effectively when they transitioned from the role of expert to the role of an enabler and supporter (Johansson, Borell, & Jonsson, 2014). The therapist-client relationship is therefore an integral part of this intervention. Therapist-Client Communication In order to achieve an effective therapist-client relationship, the attitudes and beliefs of all parties involved should be considered, and barriers to communication need to be identified and remedied. The older adult client and the therapist may have differing views regarding falls. Hst, Hendriksen, and Borup (2011) found that older adults had two beliefs about falls. The first was that falls were unavoidable and were going to happen as a natural experience, and the second was that falls were humiliating (Hst et al., 2011). Additionally, many older individuals believed that in order to fall, they typically had to have a chronic health condition, have mobility impairment, or be on a significant amount of medication (Gopaul & Connelly, 2012). Walker et al. (2011) also found that almost all older adult participants had a definition of fallers that did not include themselves. For example, one participant who described herself as a non-faller had 14 DETERMINING CONTENT VALIDITY experienced five falls in an 18-month period (Walker et al., 2011, p. 24). Though in one study individuals at risk of falls viewed themselves as competent in their role of health management, this view was almost never shared by the practitioner (Child et al., 2012). Instead, practitioners talked to the clients as if they were no longer allowed to control their own health due to their status as individuals at risk of falling (Child et al., 2012). Older adults perceived this as condescension, and, in turn, clients were less likely to participate in recommended interventions (Child et al., 2012). Participation in fall risk programs and followthrough on behavioral changes for the older adult may also be influenced by the mood of the older adult, including whether or not he or she is depressed or anxious (Best, Davis, & LiuAmbrose, 2015; Host et al., 2011). Such moods may impact the older adults motivation (Best et al., 2015) and should be taken into consideration when planning an intervention. Older adults and practitioners have identified additional barriers. First, Child et al. (2012) found that clients encountered difficulties related to money, access, and time. Clients had difficulties paying for treatments as well as physical resources required by therapy (Child et al., 2012). Access was hindered by public transportation schedules and the limited mobility of clients (Child et al., 2012). The time required for the intervention was a prohibitive factor for some patients, and the schedule of the intervention prevented others from attending (Child et al., 2012). Clients also struggled with logistical difficulties in a study by Haas, Mason, and Haines (2014). Cultural differences, specifically the belief of the inevitability of falls, were also a factor that prevented some clients from participating in falls prevention interventions (Haas et al., 2014). Furthermore, practitioners identified inadequate compensation, poor motivation/incentive, and poor communication among the healthcare team as reasons for not initiating an intervention 15 DETERMINING CONTENT VALIDITY plan for their clients (Milisen, Geeraerts, & Dejaeger, 2009). This was true of all the practitioners interviewed in the study: general practitioners, nurses, PTs, and OTs (Milisen et al., 2009). Physical and occupational therapy practitioners must establish effective therapist-client communication in order for falls prevention interventions to be effective. Practitioners should take into account the clients personal beliefs and attitudes, and practitioners should take care not to stereotype older adult individuals as fallers (Walker et al., 2011). Though researchers of one study found discrepancy among healthcare workers in terms of which practitioner was responsible for assessment, all practitioners in the study believed that it was their responsibility to identify individuals at risk for falling (Milisen et al., 2009). The literature discussing fall risk and falls prevention showed that falls are multifactorial, and an individual could fall for a variety of reasons. Falls prevention required a multidisciplinary approach, as practitioners from many professions worked toward a solution (Amacher et al., 2016; Hill-Westmoreland et al., 2002; Stubbs, Brefka, et al., 2015). Literature also supported multifactorial interventions, where more than one variable that contributed to falls was addressed (Rimland et al., 2016). However, health professionals and older adults encountered barriers such as money, access, and time, when seeking to reduce falls (Child et al., 2012). Furthermore, very few studies had addressed evidence-based strategies for reducing falls through education in the clinical setting (Hill-Westmoreland et al., 2002; Williams & Hadler, 2015). Better tools are needed to provide time-efficient means of assessing clients fall risks and engaging clients in falls prevention activities in the clinical setting. To answer this need, the primary investigator created a fall risk self-assessment and intervention workbook, entitled, My Safe and Sound Plan for Staying Falls-Free (Howard, 2016). The first version of the workbook was used for the primary investigators doctoral project (Howard, Beitman, Walker, & 16 DETERMINING CONTENT VALIDITY Moore, 2016), and a second version was used in an additional unpublished research study (Howard et al., 2017). This present study utilized the second version of the My Safe and Sound Plan (Howard, 2016; see Appendix A) workbook, which included the following sections: (a) How to Use This Book, (b) Introduction: Why do People Fall?, (c) What are the Risks?, (d) The First Step: A Fall Risk Screening, and (e) My Safe and Sound Plan including eight sections titled Change your mind; Manage Your Medicines; Managing Heart Rate, Rhythm, Blood Pressure; Vision; Footwear and Foot Care; Vitamin D and Calcium; Exercises for Fall Prevention; and a Home Safety Check. Additionally, the workbook contained blank lines for the client to self-evaluate and write their own goals, for customization of the plan (Howard, 2016). Accordingly, there is a need to establish the validity of this evidence-based multifactorial fall risk education measure in a traditional clinical setting. The purpose of this study was to determine the content validity of the My Safe and Sound Plan (Howard, 2016) workbook through review by a panel of experts who were occupational and physical therapy practitioners. Through survey responses, occupational and physical therapy practitioners reported on the representativeness and clarity of the workbook as a fall risk assessment and its usability as a self-assessment for individuals who are at risk for falling. Rubio, Berg-Weger, Tebb, Lee, & Rauch (2003) have defined representativeness as an items ability to represent the content domain. Rubio et al. (2003) have defined clarity as how clearly an item is worded. Method In this study, investigators utilized a panel of experts to determine the content validity of the My Safe and Sound Plan (Howard, 2016) workbook through the method outlined by Rubio et al. (2003). This method included review of the workbook by occupational and physical 17 DETERMINING CONTENT VALIDITY therapy practitioners who have worked with the population at risk for falls. Ethics The Director of the Human Research Protections Program (HRPP) approved this study as exempt on May 2, 2017 (UIndy Study #0823). Recruitment The participants of the study were recruited via email, phone, and personal contact with managers and directors at three local rehabilitation facilities. Materials provided to the facilities included the My Safe and Sound Plan (Howard, 2016) workbook, sample survey questionnaire, and a sample Letter of Cooperation. Please refer to Appendix A for the version of the workbook distributed to participants. Two facilities agreed to participate. Both facilities were large health networks with both inpatient and outpatient facilities; the network representatives chose to limit participation to the outpatient setting, as they believed this to be a more appropriate avenue for use of the falls prevention workbook. The participants of this study included occupational and physical therapy practitioners working with individuals at risk for falls as defined by the practitioners in the clinical setting. To be included in the study, the practitioners had to be employed by a facility in which a Letter of Cooperation was provided and had to work with individuals at risk for falling on a regular basis. Following the outline set forth by Rubio et al. (2003), OT and PT practitioners were chosen for their work experience with the population of interest. Practitioners were excluded from the study if they were students. According to Rubio et al. (2003), a minimum of three professional participants are necessary when conducting research for content validity. Definitions 18 DETERMINING CONTENT VALIDITY Fall: Event[s] which [result] in a person coming to rest inadvertently on the ground or floor or other lower level (WHO, 2016). Fall risk: Any intrinsic or extrinsic factor that places an individual at an increased potential for falling. Practitioners: Individuals who are licensed to practice occupational or physical therapy in the state in which they practice. At-Risk Individual: An individual who the practitioner deems to be at an increased risk for falls through their clinical reasoning and an assessment of fall risks specific to that individual. Instruments Investigators distributed a survey via paper copies, per request of participating hospitals. Qualtrics (Provo, UT), an online survey tool, was used for data storage and preliminary analysis. The survey included questions regarding the participants perception of the My Safe and Sound Plan (Howard, 2016) workbook as a tool for assessing and communicating fall risk factors to clients. The workbook was examined as an evaluation measure because it included both a self-assessment and self-home assessment. In order to establish content validity, the questionnaire addressed representativeness and clarity of items in the workbook using methods described in Rubio et al. (2003). In Rubio et al. (2003), four criteria were used to evaluate a new measure: representativeness of the content domain, clarity of the item, factor structure, and comprehensiveness of the measure. Each criteria was rated on a scale from one to four, with anchors provided: a score of one means that the item is not representative or clear, while a score of four means that the item is representative or clear. Once results were collected, Rubio et al. (2003) calculated the interrater agreement for representativeness scores and for clarity scores. 19 DETERMINING CONTENT VALIDITY This determined the degree to which the experts were reliable in their ratings of one to four. In order to calculate interrater agreement, items rated on the four-point scale were dichotomized, combining one with two, and three with four. If both representativeness and clarity were to have satisfactory interrater agreement, the content validity index could be calculated using the same dichotomized information. The number of items rated three or four would be totaled, and divided by the total number of items. Ideally, the content validity index would be at least 0.8. The interrater agreement, content validity, and expert feedback would then be used to revise the measure. Please refer to Appendix B for the informed consent document and items included in the survey. Data Collection Procedures Investigators followed procedures outlined by Rubio et al. (2003) for establishing content validity through use of a panel of experts. A sufficient number of participants recommended by Rubio et al. (2003) was 6 to 20 experts, with at least three being professional and three being lay experts. Since a previous study focused on obtaining data from lay experts (Howard et al., 2017), this study focused on obtaining data from professional experts. In order to obtain the recommended number of participants to represent the target population, the survey opened summer 2017 and closed after 90 days. Paper copies were manually entered into Qualtrics for protection of participants and then scanned, electronically stored, and paper copies were shredded. The final question on the survey was voluntary and requested that participants provide names and phone numbers that were used for member checking in the data analysis process. These names and phone numbers were physically removed from the paper surveys and were not linked with the data that was entered into Qualtrics. 20 DETERMINING CONTENT VALIDITY Data Analysis Data were entered into SPSS (Version 25.0, 2017) for analysis. Investigators performed checks for data integrity, which consisted of frequencies and counts to check for missing data. Investigators limited this present study to examining representativeness and clarity of items, representativeness of the measure overall, and informal feedback regarding comprehensiveness of the measure. A factor validity index calculation was not relevant to the purpose of this study (Rubio et al., 2003). Investigators established reliability by calculating inter-rater agreement (IRA) of clarity items and of representativeness items. Following the procedure outlined in Rubio et al. (2003), the items rated on a four-point numeric scale were dichotomized to combine one with two, and three with four. IRA was calculated for representativeness of items, for clarity of items, and for the representativeness of the measure as a whole. An acceptable level of IRA was considered to be .80 for each item (Rubio et al., 2003). Once reliability was established, investigators calculated the content validity index (CVI). Content validity was calculated based on the representativeness items only, as described by Rubio et al. (2003). To determine the CVI of the representativeness of each item, investigators transformed variables to combine 1 and 2 as not representative and 3 and 4 as representative. For each item, the number of experts who rated it 3 or 4 were totaled, then divided by the total number of experts. To calculate the CVI for the tool as a whole, investigators calculated the average CVI across all representativeness items by adding up all items with a CVI of at least .80 and dividing by the total number of items in the representativeness category. An acceptable level of CVI is .80 (Rubio et al., 2003). Qualitative comments were considered for workbook revisions, and investigators conducted member 21 DETERMINING CONTENT VALIDITY checking by conducting follow-up phone calls or emails to those participants who opted to provide their name and phone number. The follow-up questions may be viewed in Table 1. Results Participants Investigators distributed surveys to the two participating facilities, with a possibility of approximately 25 respondents. Seven surveys were returned, all on paper, but two surveys were discarded that were duplicates of the same respondent (as indicated by the respondent). The total sample consisted of five participants who completed the My Safe and Sound Plan (Howard, 2016) workbook survey. According to Rubio et al. (2003), a minimum of three professional participants are needed for a study of this type; therefore, five professional participants met this criteria. Participants included three OTs and two PTs with 11-30 (mean=20) years of experience working with individuals at risk for falls in an outpatient setting. Participants reported neurologic, vestibular, proprioceptive, and frequent falls as the most commonly treated primary diagnoses. All participants reported utilizing in-clinic practice as a fall risk education method, two participants reported using a handout, and one participant reported referring patients to a class for fall risk education. See Table 2 for participant characteristics. Inter-Rater Agreement and Validity The IRA for clarity items was .862. Twenty-five of 29 items had an IRA of .80 or above, indicating interrater agreement. The individual items for clarity that did not achieve IRA were Exercises for Fall Prevention: Endurance, and Exercises for Fall Prevention: Stretching (Table 3). The IRA for representativeness items was 1.00. All individual items for representativeness met the IRA of 1.00 (Table 4). See Table 5 for IRA of the entire measure. Representativeness items were shown to be reliable due to having 1.00 IRA, allowing investigators to proceed to 22 DETERMINING CONTENT VALIDITY calculate validity. All representativeness items had a CVI of .80 or 1.00 individually (Table 6). The CVI for the entire tool was 1.00, or 100%. Qualitative Findings Table 7 provides qualitative responses obtained from the participants via the survey. Comments were too few to analyze with qualitative means. Rather, participants comments informed the follow-up questions used for member checking. Member Checking After all surveys were returned and results were analyzed, the investigators followed up with those participants who had indicated their willingness to provide additional feedback regarding proposed edits to the workbook. The primary investigator edited the tool according to feedback on the initial survey, and the investigators provided this updated version to the respondents. Two participants were contacted via email and phone calls, and one physical therapist agreed to participate. This participant responded via email and agreed that adding a one sentence explanation to each activity within the The First Step: A Fall Risk Screening might enhance clients understanding. This participant also agreed that adding resources to the end of the workbook informing clients where they may obtain local access to items such as pill sorters and medical alert buttons would also be helpful to clients. To increase the clarity of items within the workbook, the participant suggested adding a description for length of time and intensity to the section about endurance exercises and specifying how long to hold a stretch and how many repetitions were needed to complete the stretching exercises. The participant noted that the investigators could also leave space in the workbook for the practitioner to fill in this information depending on the specific need of each client. Within the Manage Your Medicines section, for the item take your medicines the right way, the participant suggested replacing the phrase the 23 DETERMINING CONTENT VALIDITY right way with as recommended or as indicated to increase clarity. Lastly, the participant suggested changing the fall risk screen term flexibility to functional reach (Howard, 2016, p. 7) to be more representative. Discussion The purpose of this study was to determine the content validity of the My Safe and Sound Plan (Howard, 2016) workbook. Investigators accomplished this by utilizing a panel of experts to review the workbook using the methodology described in Rubio et al. (2003). Experts found workbook items achieved representativeness, meaning the items accurately reflected the self-assessment of fall risk. Experts also found workbook items had clarity, meaning the items were appropriately and clearly written for the population at risk for falls. Oliver et al. (2004) stated that clinicians need a consistent method of addressing fall risks, and this evidence-based tool allows practitioners to address fall risks with their clients. Workbook Changes Following member checking, the primary investigator revised the workbook based on feedback. Adjustments included the wording regarding medications and supplements and adding a text box beside each exercise so that practitioners could indicate what was recommended for the client. A blank page was added after exercises so that practitioners could add other content that they feel is appropriate for the client. A list of resources was added after the calendar, including sources for obtaining adaptive equipment for home modification. See Appendix C for a downloadable third version of the My Safe and Sound Plan workbook. These changes allowed for greater individualization of the workbook. Child et al. (2012) examined the behavior of older adults in falls prevention programs and found that they were less likely to participate in programs if their agency and individual needs were not addressed through a generic program. The edited 24 DETERMINING CONTENT VALIDITY My Safe and Sound Plan workbook allowed for individualized participation and programming, increasing the likelihood that clients would follow through with suggestions in the workbook. Clarity of Items The following items did not have interrater agreement for the clarity of the item: Exercises for Fall Prevention: Stretching and Exercises for Fall Prevention: Endurance. During member checking, the participant stated that there was some confusion about the definition of clarity which affected the responses. Providing definitions to practitioners for clarity and representativeness might improve the accuracy of IRA assessment. Because the IRA was above .80 for both representativeness and clarity (Table 5), this workbook demonstrated content validity as defined by Rubio et al. (2003). The workbook therefore contains and addresses the items that investigators intended according to these experts. Oliver et al. (2004) stated the need for a better-validated assessment tool in clinical practice to assess falls. According to the participant experts, the My Safe and Sound Plan (Howard, 2016) workbook demonstrates content validity necessary to be an effective and valid tool. Future studies could repeat this methodology using the updated version of the workbook. Implications for Practice Howard et al. (2017) examined the perspective of potential clients or users of the My Safe and Sound Plan. In the current research study, the practitioners who would use this workbook in practice contributed their perspective. Taken together, these two perspectives can assure content validity for using the My Safe and Sound Plan workbook to facilitate the therapeutic relationship with clients. Walker et al. (2011) found that many health practitioners held negative stereotypes of older adults as fallers, which negatively impacted the therapeutic 25 DETERMINING CONTENT VALIDITY relationship. It is important that practitioners respect the agency and individuality of clients while opening a dialogue about the fall risk factors of clients. This respectful dialogue ensures that practitioners do not carry any unconscious bias into interactions with clients, and that clients are more likely to follow through with any recommendations and/or programming. Successful implementation for lifestyle changes requires individuals to have the desire to change. Extrinsic factors can facilitate the desire to change, but it is ultimately up to the individual to incorporate new behaviors into their lifestyle. Change does not occur in an instant, but rather through a gradual process. This process is described in research as the Transtheoretical Model of Behavior Change (TMBC) consisting of five stages: precontemplation (not aware of a need for change), contemplation (aware of need for change), preparation (plan to change), action (new behaviors are tried, but inconsistent), and maintenance (long-term establishment of behavior) (DiClemente & Prochaska, 1998). Healthcare practitioners must consider ways to facilitate movement through the stages of change when encouraging a client to adopt fall risk reduction behaviors. Investigators received qualitative and constructive feedback from participants that used the My Safe and Sound Plan workbook with their clients. The following participant response reflects behavior that is associated with the precontemplation stage of the TMBC: This client was not very receptive to the information. He said it was all things he had been told before in various settings by various people. He chooses not to follow the recommendations and also continues to fall nearly daily (See Table 7, Qualitative Responses). The statement demonstrated that the client was not considering implementing the change and did not recognize how choosing to follow recommendations could affect him on a personal level. 26 DETERMINING CONTENT VALIDITY Healthcare practitioners act as educators and supporters of new behaviors that can be implemented into the lifestyle of the at-risk population that they are working with. The My Safe and Sound Plan workbook was designed to be used as a tool for education of the client. It is important to note that traditional education techniques and tools are not effective with all clients as each individual moves through the stages of change at different rates (Zimmerman, Olsen, & Bosworth, 2000). Therefore, healthcare practitioners must stay attuned to the needs of each client and modify approaches to intervention accordingly. Limitations Due to the time needed to allow for IRB approval and the academic schedule of the student investigators, there was a time delay from recruitment to distribution of the survey questions, which may have resulted in loss of interest or decreased participant response. Though the number of participants for the current study met the minimum recommended number of professional experts according to Rubio et al. (2003), the small number of participants was limited geographically, and demographic diversity was not assessed. Furthermore, the participants of this study represented only the practitioner side of fall risks. Regarding the survey questions, the investigators did not define clear and representative for our experts, which may have influenced participants responses. The authors also did not have knowledge of what specific diagnoses the experts were considering, with the exception of one participant who mentioned stroke. Following the methodology outlined in Rubio et al. (2003), the current study has similar limitations. There have been limitations with using experts for content validity; the experts were only able to provide their thoughts, which provided a subjective rather than objective measure (Rubio et al., 2003). Additionally, this study considered only one type of validity; therefore, additional psychometric testing may be indicated to establish validity (Rubio 27 DETERMINING CONTENT VALIDITY et al., 2003). Lastly, though the authors conducted member checking, there was no second iteration of expert review following suggested revisions, so the most current version of the workbook (Appendix C) has not been formally assessed. Conclusion Consulting a panel of experts, investigators found the My Safe and Sound Plan (Howard, 2016) workbook demonstrated content validity and IRA. Since the present study examined only content validity, further research using the updated version of the workbook could address other types of validity. Using a tool that is valid and effective in clinical and home settings will allow clients to achieve the best outcomes for reducing fall risks. 28 DETERMINING CONTENT VALIDITY References Amacher, A. E., Nast, I., Zindel, B., Schmid, L., Krafft, V., & Niedermann, K. (2016). Experiences of general practitioners, home care nurses, physiotherapists and seniors involved in a multidisciplinary home-based fall prevention programme: A mixed method study. BMC Health Services Research, 16, 1-11. doi: 10.1186/s12913-016-1719-5 Auais, M., Alvarado, B. E., Curcio, C., Garcia, A., Ylli, A. & Deshpande, N. (2016). 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Z., & Rea, M. S. (2011). Lighting and perceptual cues: Effects on gait measures of older adults at high and low risk for 30 DETERMINING CONTENT VALIDITY falls. BMC Geriatrics, 11(49), 1-10. doi: 10.1186/1471-2318-11-49 Frank-Wilson, A. W., Farthing, J. P., Chilibeck, P. D., Arnold, C. M., Davison, K. S., Olszynski, W. P., & Kontulainen, S. A. (2016). Lower leg muscle density is independently associated with fall status in community-dwelling older adults. Osteoporosis International: A Journal Established as Result of Cooperation Between the European Foundation for Osteoporosis and the National Osteoporosis Foundation of the USA, 27(7), 2231-2240. doi:10.1007/s00198-016-3514-x Gillespie, L. D., & Robertson, C. M. (2009). Fall prevention in community-dwelling older adults. Journal of American Medical Association 309(13), 1406-1407. doi:10.1001/jama.2013.3130 Gopaul, K., & Connelly, D. M. (2012). Fall risk beliefs and behaviors following a fall in community-dwelling older adults: A pilot study. Physical & Occupational Therapy In Geriatrics, 30(1), 53-72. doi:10.3109/02703181.2011.649230 Haas, R., Mason, W., & Haines, T. P. (2014). Difficulties experienced in setting and achieving goals by participants of a falls prevention programme: A mixed-methods evaluation. Physiotherapy Canada, 66(4), 413-422. doi: 10.3138/ptc.2013-30BC Haines, T.P., Hill, A.M., Hill, K.D., McPhail, S., Oliver, D., Brauer, S., Hoffman, T. (2011). Patient education to prevent falls among older hospital inpatients. Archives of Internal Medicine Journal, 171(6), 516-524. Hernandez, M. E., Goldberg, A., & Alexander, N. B. (2010). Decreased muscle strength relates to self-reported stooping, crouching, or kneeling difficulty in older adults. Physical Therapy, 90(1), 67-74. doi:10.2522/ptj.20090035 Hill, A. M., Etherton-Beer, C., & Haines, T. P. (2013). Tailored education for older patients to 31 DETERMINING CONTENT VALIDITY facilitate engagement in falls prevention strategies after hospital discharge A pilot randomized controlled trial. Plos ONE, 8(5), 1-11. doi: 10.1371/journal.pone.0063450 Hill-Westmoreland, E. E., Soeken, K., & Spellbring, A. M. (2002). A meta-analysis of fall prevention programs for the elderly: How effective are they? Nurse Research, 51(1), 1-8. Hst, D., Hendriksen, C., & Borup, I. (2011). Older peoples perception of and coping with falling, and their motivation for fall-prevention programmes. Scandinavian Journal Of Public Health, 39(7), 742-748. doi:10.1177/1403494811421639 Howard, B. (2016). My safe and sound plan for staying falls free (Version 2; Unpublished manuscript). Indianapolis, IN: University of Indianapolis. Howard, B. (2018). My safe and sound plan for staying falls free (Version 3; Unpublished manuscript). Indianapolis, IN: University of Indianapolis. Howard, B., Beitman, C., Walker, B. A., & Moore, E. (2016). Cross-cultural educational intervention and fall risk awareness, Physical & Occupational Therapy In Geriatrics, 34(1), 1-20. doi: 10.3109/02703181.2015.1105344 Howard, B., Brown, F., Crull, M., Ham, K., Sellers, A., Thomas, E., & Zaborowicz, K. (2017). Fall risk awareness after a brief falls prevention intervention. (Unpublished Manuscript). Indianapolis, IN: University of Indianapolis. Huang, H. (2004). A checklist for assessing the risk of falls among the elderly. The Journal of Nursing Research: JNR, 12(2), 131-142. doi:10.1097/01.JNR.0000387496.39675.7f Jamtvedt, G., Young, J. M., Kristoffersen, D. T., O'Brien, M. A., & Oxman, A. D. (2006). Audit and feedback: Effects on professional practice and health care outcomes. The Cochrane Database Of Systematic Reviews, (2), CD000259. Johansson, E., Borell, L., & Jonsson, H. (2014). Letting go of an old habit: Group leaders' 32 DETERMINING CONTENT VALIDITY experiences of a client-centred multidisciplinary falls-prevention programme. Scandinavian Journal of Occupational Therapy, 21(2), 98-106. Johnson, M., Kelly, L., Siric, K., Tran, D. T., & Overs, B. (2015). Improving falls risk screening and prevention using an e-learning approach. Journal of Nursing Management, 23(7), 910-919. doi: 10.1111/jonm.12234 Kyrdalen, I.L., Moen, K., Roysland, A.S., & Helbostad, J.L. (2014). The Otago exercise program performed as group training versus home training in fall-prone older people: A randomized controlled trial. Physiotherapy Research International, 19(2), 108-116. doi: 10.1002/pri.1571 Lam, J., Liamputtong, P., & Hill, K. (2015). Falls, falls prevention and the role of physiotherapy and exercise: perceptions and interpretations of Italian-born and Australian-born older persons living in Australia. Journal of Cross-Cultural Gerontology, 30(2), 233-249. doi: 10.1007/s10823-015-9263-z Lord, S. R. (2006). Visual risk factors for falls in older people. Age and Ageing, 35(S2), ii42ii45. doi:10.1093/ageing/afl085 MacKenzie, L., Clemson, L., & Roberts, C. (2013). Occupational therapists partnering with general practitioners to prevent falls: Seizing opportunities in primary health care. Australian Occupational Therapy Journal, 60, 66-70. doi: 10.1111/1440-1630.12030 Maruf, F., Muonwe, C., & Odetunde, M. (2016). Social risk factors for falls among rural Nigerian community-dwelling older adults. Geriatrics & Gerontology International, 16, 747-753. doi:10.1111/ggi.12548 Milisen, K., Geeraerts, A., & Dejaeger, E. (2009). Use of a fall prevention practice guideline for community-dwelling older persons at risk for falling: A feasibility study. Gerontology, 33 DETERMINING CONTENT VALIDITY 55, 169-178. doi: 10.1159/000165172 Min, Y., Kirkwood, C., Mays, D., & Slattum, P. (2016). The effect of sleep medication use and poor sleep quality on risk of falls in community-dwelling older adults in the US: A prospective cohort study. Drugs & Aging, 33(2), 151-158. doi:10.1007/s40266-015-03399 National Council on Aging. (n.d.). Falls prevention facts. Retrieved from https://www.ncoa.org/news/resources-for-reporters/get-the-facts/falls-prevention-facts/ Nelson, J. M., Dufraux, K., & Cook, P. F. (2007). The relationship between glycemic control and falls in older adults. Journal of the American Geriatrics Society, 55(12), 2041-2044. doi:10.1111/j.1532-5415.2007.01430.x Ohde, S., Terai, M., Oizumi, A., Takahashi, O., Deshpande, G. A., Takekata, M., . . . Fukui, T. (2012). The effectiveness of a multidisciplinary QI activity for accidental fall prevention: Staff compliance is critical. BMC Health Services Research, 12(1), 197. Okubo, Y., Seino, S., Yabushita, N., Osuka, Y., Jung, S., Nemoto, M., . . . Tanaka, K. (2015). Longitudinal association between habitual walking and fall occurrences among community-dwelling older adults: Analyzing the different risks of falling. Archives of Gerontology & Geriatrics, 60(1), 45-51. doi:10.1016/j.archger.2014.10.008 Oliver, D., Daly, F., Martin, F. C., & McMurdo, E. T. (2004). Risk factors and risk assessment tools for falls in hospital in-patients: A systematic review. Age and Ageing, 33, 122-130. Peterson, E. W., Finlayson, M., Elliot, S. J., Painter, J. A., & Clemson, L. (2012). Unprecedented opportunities in fall prevention for occupational therapy practitioners. American Journal of Occupational Therapy, 66(2), 127-130. doi: 10.5014/ajot.2012.003814 Qin, Z., & Baccaglini, L. (2016). Distribution, determinants, and prevention of falls among the 34 DETERMINING CONTENT VALIDITY elderly in the 2011-2012 California health interview survey. Public Health Reports, 131(2), 331-339. Qualtrics (April, 2017) [Computer software]. Provo, UT: Qualtrics. Richardson, K., Bennett, K., & Kenny, R. A. (2015). Polypharmacy including falls riskincreasing medications and subsequent falls in community-dwelling middle-aged and older adults. Age and Ageing, 44, 90-96. doi:10.1093/ageing/afu141 Richardson, K., Bennett, K., Maidment, I. D., Fox, C., Smithard, D., & Kenny, R. A. (2015). Use of medications with anticholinergic activity and self-reported injurious falls in older community-dwelling adults. Journal of the American Geriatrics Society, 63(8), 15611569. doi:10.1111/jgs.13543 Rimland, J., Abraha, I., DellAlquila, G., Cruz-Jentoft, A., Soiza, R., Gudmusson, A., Petrovic M., . . . Cherubini, A. (2016). Effectiveness of non-pharmacological interventions to prevent falls in older people: A systematic overview. The SENATOR project ONTOP series. PloS ONE, 11(8): 1-29. doi: 10.1371/journal.pone.0161579 Robinson, L., Newton, J. L., Jones, D., & Dawson, P. (2014). Self-management and adherence with exercise-based falls prevention programmes: A qualitative study to explore the view and experiences of older people and physiotherapists. Disability and Rehabilitation 36(5), 379-386. doi: 10.3109/09638288.2013.797507 Roman de Mettelinge, T., Cambier, D., Calders, P., Van Den Noortgate, N., & Delbaere, K. (2013). Understanding the relationship between Type 2 diabetes mellitus and falls in older adults: A prospective cohort study. Plos ONE, 8(6), 1-5. doi:10.1371/journal.pone.0067055 Rosen, T., Mack, K. A., & Noonan, R. K. (2013). Slipping and tripping: fall injuries in adults 35 DETERMINING CONTENT VALIDITY associated with rugs and carpets. Journal of Injury & Violence Research, 5(1), 61-69. doi:10.5249/ jivr.v5i1.177 Rubio, D., Berg-Weger, M., Tebb, S., Lee, E. S., & Rauch, S. (2003). Objectifying content validity: Conducting a content validity study in social work research. Social Work Research, 27(2), 94-104. Sakurai, R., Fujiwara, Y., Sakuma, N., Suzuki, H., Ishihara, M., Higuchi, T., & Imanaka, K. (2014). Influential factors affecting age-related self-overestimation of step-over ability: Focusing on frequency of going outdoors and executive function. Archives of Gerontology and Geriatrics, 59(3), 577-583. doi:10.1016/j.archger.2014.07.017 Scaffa, M., Reitz, S.M., & Pizzi, M.A. (2010). Occupational therapy in the promotion of health and wellness. Philadelphia: F.A.Davis Company. Shimbo, D., Barrett Bowling, C., Levitan, E. B., Deng, L., Sim, J. J., Huang, L., . . . Muntner, P. (2016). Short-term risk of serious fall injuries in older adults initiating and intensifying treatment with antihypertensive medication. Circulation. Cardiovascular Quality and Outcomes, 9(3), 222-229. doi:10.1161/CIRCOUTCOMES.115.002524 Simpson, A. W., Lamb, S., Roberts, P. J., Gardner, T. N., & Evans, J. G. (2004). Does the type of flooring affect the risk of hip fracture? Age & Ageing, 33(3), 242-245. doi:10.1093/ageing/afh071 Statistical Packages for the Social Sciences (Version 25.0) [Computer Software]. Armonk, NY: IBM Corp. Steinman, B. A., Pynoos, J., & Nguyen, A. (2009). Fall risk in older adults: Roles of self-rated vision, home modifications, and limb function. Journal of Aging and Health, 21(5), 655676. doi:10.1177/0898264309338295 36 DETERMINING CONTENT VALIDITY Stubbs, B., Brefka, S., & Denkinger, M.D. (2015). What works to prevent falls in communitydwelling older adults? Umbrella review of meta-analyses of randomized controlled trials. Physical Therapy, 95(8), 1095-1110. doi: 10.2522/ptj.20140461 Stubbs, B., Eggermont, L., Patchay, S., & Schofield, P. (2015). Older adults with chronic musculoskeletal pain are at increased risk of recurrent falls and the brief pain inventory could help identify those most at risk. Geriatrics & Gerontology International, 15(7), 881-888. doi:10.1111/ggi.12357 Vivrette, R. L., Rubenstein, L. Z., Martin, J. L., Josephson, K. R., & Kramer, B. J. (2011). Development of a fall-risk self-assessment for community-dwelling seniors. Journal of Aging and Physical Activity, 19(1), 16-29. Walker, W., Porock, D., & Timmons, S. (2011). The importance of identity in falls prevention. Nursing Older People, 23(3), 21-26. Ward, R. E., Leveille, S. G., Beauchamp, M. K., Travison, T., Alexander, N., Jette, A. M., & Bean, J. F. (2015). Functional performance as a predictor of injurious falls in older adults. Journal of the American Geriatrics Society, 63(2), 315-320. doi:10.1111/jgs.13203 Williams, M. E., & Hadler, N. M. (2015). In hospital rehabilitation units, adding individualized fall-prevention education to usual care reduced falls. American College of Physicians Journal Club, 163(4), 1. doi: 10.7326/ACPJC-2015-163-4-013 World Health Organization. (2016). Falls. Retrieved from http://www.who.int/mediacentre/factsheets/fs344/en/ Yardley, L., Bishop, F. L., Beyer, N., Hauer, K., Kempen, G. I., Piot-Zeigler, C., . . . Holt, A., R. (2006). Older peoples views of falls-prevention interventions in six European countries. 37 DETERMINING CONTENT VALIDITY The Gerontologist, 46(5), 650660. Zimmerman, Olsen, & Bosworth. (2000). A stage of change approach to helping patient change behavior. American Family Physician Journal, 61(5), 1409-1416. 38 DETERMINING CONTENT VALIDITY Table 1 Member Checking Questions Sent Via Email 1. Would changing the fall risk screen flexibility to functional reach make it more representative (pg. 7)? 2. If we would provide a short (1 sentence) explanation to the end of each activity on why it is important for balance (in the screening and exercises sections) such as examples below, do you think these edits would make it better to understand? (pg. 6-7) a. Strength (pg. 6)- You need to be strong to keep your balance b. Endurance (pg. 6)- You need to be strong over and over to keep your balance c. Balance (pg. 6)- You need to keep your balance when you cannot use your eyes d. Flexibility or Functional Reach (pg. 7)- You need to be able to reach far without falling e. Balance Confidence (pg. 7)- People usually know when something is wrong with their balance f. How would you word why stretching is important (at a 3rd grade level) (pg. 15)? 3. In the manage your medicines section, how do we make the right way clearer? (pg. 10) 4. What would make endurance in exercises more clear (pg. 18)? a. Besides frequency, duration, rationale any other suggestions? b. How would you word the endurance section of exercises? 5. What would make stretching in exercises more clear (pg.19)? More representative? 6. Suggestions for wording to get individuals started exercising? How do you challenge/push yourself while exercising? 7. We had a suggestion to provide more info on multitasking in the home safety assessment (pg. 24) Suggestions on what sections to add? a. In mobility? In somewhere else? 8. What other resources could we include at the end that would be helpful? a. Ideas we had were fall alert button, AHA, pill sorter 39 DETERMINING CONTENT VALIDITY Table 2 Participant Characteristics Characteristic n(%) Content Experts (Outpatient Setting, 11-30 Years of Experience [mean=20]) Occupational Therapists (OTs) 3(60%) Physical Therapists (PTs) 2(40%) Primary Diagnoses Seen: Orthopedic 1(20%) Neurologic 4(80%) Vestibular 4(80%) Proprioceptive 3(60%) Visual 2(40%) Multifactorial 2(40%) Frequent Falls 3(60%) Current Fall Risk Education Method: Handout 2(40%) In-Class 1(20%) In-Clinic Practice 5(100%) 40 DETERMINING CONTENT VALIDITY Table 3 Interrater Agreement on Clarity of Workbook Items Item Expert Ranking on Scale 1 = Item is not representative or clear 2 = Item needs major revisions to be representative/clear 3 = Item needs minor revisions to be representative/clear 4 = Item is representative/clear Frequency Percent Agreement? Introduction: How to Use This Book 4 5 100 Yes Introduction: Why do People Fall? Internal Reasons 4 5 100 Yes Introduction: Why do People Fall? External Reasons 4 5 100 Yes Introduction: What are the Risks? 4 5 100 Yes 41 DETERMINING CONTENT VALIDITY 1 1 20 4 4 80 1 1 20 4 4 80 1 1 20 4 4 80 1 1 20 4 4 80 Fall Risk Screening: Balance Confidence 4 5 100 Yes My Safe and Sound Plan: Change your Mind 4 5 100 Yes My Safe and Sound Plan: Manage your Medicines 4 5 100 Yes Fall Risk Screening: Strength Fall Risk Screening: Endurance Fall Risk Screening: Balance Fall Risk Screening: Flexibility Yes Yes Yes Yes 42 DETERMINING CONTENT VALIDITY My Safe and Sound Plan: Manage your Heart 4 5 100 Yes My Safe and Sound Plan: Vision 4 5 100 Yes My Safe and Sound Plan: Footwear and Foot Care 4 5 100 Yes My Safe and Sound Plan: Vitamin D and Calcium 4 5 100 Yes Exercises for Fall Prevention: Strength 3 1 20 Yes 4 4 80 Exercises for Fall Prevention: Endurance 3 2 40 4 3 60 Exercises for Fall Prevention: Balance 3 1 20 4 4 80 No Yes 43 DETERMINING CONTENT VALIDITY Exercises for Fall Prevention: Stretching 3 2 40 No 4 3 60 Home Safety Check: In The Home 4 5 100 Yes Home Safety Check: Entrance, Halls, and Steps 4 5 100 Yes Home Safety Check: Kitchen 4 5 100 Yes Home Safety Check: Bathrooms 4 5 100 Yes Home Safety Check: Bedroom 4 5 100 Yes Home Safety Check: Living Room 4 5 100 Yes 44 DETERMINING CONTENT VALIDITY Home Safety Check: My Activities and Behaviors 4 5 100 Yes Home Safety Check: My Mobility 4 5 100 Yes Summary: CalendarFill in the Blank Goals 4 5 100 Yes Summary: Calendar Tool 4 5 100 Yes 45 DETERMINING CONTENT VALIDITY Table 4 Interrater Agreement on Representativeness of Workbook Items Item Expert Ranking on Scale 1 = Item is not representative or clear 2 = Item needs major revisions to be representative/clear 3 = Item needs minor revisions to be representative/clear 4 = Item is representative/clear Frequency Percent Agreement? Introduction: How to Use This Book 4 5 100 Yes Introduction: Why do People Fall? Internal Reasons 4 5 100 Yes Introduction: Why do People Fall? External Reasons 4 5 100 Yes Introduction: What are the Risks? 4 5 100 Yes Fall Risk Screening: Strength 4 5 100 Yes Fall Risk Screening: Endurance 4 5 100 Yes 46 DETERMINING CONTENT VALIDITY Fall Risk Screening: Balance 4 5 100 Yes Fall Risk Screening: Flexibility 3 1 20 Yes 4 4 80 Fall Risk Screening: Balance Confidence 4 5 100 Yes My Safe and Sound Plan: Change your Mind 4 5 100 Yes My Safe and Sound Plan: Manage your Medicines 4 5 100 Yes My Safe and Sound Plan: Manage your Heart 4 5 100 Yes My Safe and Sound Plan: Vision 4 5 100 Yes 47 DETERMINING CONTENT VALIDITY My Safe and Sound Plan: Footwear and Foot Care 4 5 100 Yes My Safe and Sound Plan: Vitamin D and Calcium 4 5 100 Yes Exercises for Fall Prevention: Strength 4 5 100 Yes Exercises for Fall Prevention: Endurance 4 5 100 Yes Exercises for Fall Prevention: Balance 4 5 100 Yes Exercises for Fall Prevention: Stretching 3 1 20 Yes 4 4 80 Home Safety Check: In The Home 4 5 100 Yes Home Safety Check: Entrance, Halls, and Steps 4 5 100 Yes 48 DETERMINING CONTENT VALIDITY Home Safety Check: Kitchen 4 5 100 Yes Home Safety Check: Bathrooms 4 5 100 Yes Home Safety Check: Bedroom 4 5 100 Yes Home Safety Check: Living Room 4 5 100 Yes Home Safety Check: My Activities and Behaviors 4 5 100 Yes Home Safety Check: My Mobility 4 5 100 Yes Summary: Calendar- Fill in the Blank Goals 4 5 100 Yes Summary: Calendar Tool 4 5 100 Yes 49 DETERMINING CONTENT VALIDITY Table 5 Interrater Agreement (IRA) for Entire Measure Total Number of Items Items with 100% IRA with Dichotomous Variables IRA Score 29 25 .862 Representativeness 29 29 1.00 Clarity 50 DETERMINING CONTENT VALIDITY Table 6 Content Validity Index (CVI) for Representative Items Item Name Expert Ranking on Scale Frequency Percent 3 = Item needs minor improvements 4 = Item is representative/clear* CVI per Item Introduction: How to use this book 4 5 100 1.00 Introduction: Why do People Fall? Internal Reasons 4 5 100 1.00 Introduction: Why do People Fall? External Reasons 4 5 100 1.00 Introduction: What are the Risks? 4 5 100 1.00 Fall Risk Screening: Strength 4 5 100 1.00 Fall Risk Screening: Endurance 4 5 100 1.00 Fall Risk Screening: Balance 4 5 100 1.00 Fall Risk Screening: Flexibility 3 4 1 4 20 80 1.00 Fall Risk Screening: Balance Confidence 4 5 100 1.00 My Safe and Sound Plan: Change Your Mind 4 5 100 1.00 51 DETERMINING CONTENT VALIDITY My Safe and Sound Plan: Manage Your Medicines 4 5 100 1.00 My Safe and Sound Plan: Manage Your Heart 4 5 100 1.00 My Safe and Sound Plan: Vision 4 5 100 1.00 My Safe and Sound Plan: Footwear and Foot Care 4 5 100 1.00 My Safe and Sound Plan: Vitamin D and Calcium 4 5 100 1.00 Exercises for Fall Prevention: Strength 4 5 100 1.00 Exercises for Fall Prevention: Endurance 4 5 100 1.00 Exercises for Fall Prevention: Balance 4 5 100 1.00 Exercises for Fall Prevention: Stretching 3 4 1 4 20 80 1.00 Home Safety Check: In the Home 4 5 100 1.00 Home Safety Check: Entrance, Halls, and Steps 4 5 100 1.00 Home Safety Check: Kitchen 4 5 100 1.00 52 DETERMINING CONTENT VALIDITY Home Safety Check: Bathrooms 4 5 100 1.00 Home Safety Check: Bedrooms 4 5 100 1.00 Home Safety Check: Living Room 4 5 100 1.00 Home Safety Check: My Activities and Behaviors 4 5 100 1.00 Home Safety Check: My Mobility 4 5 100 1.00 Summary: Calendar- Fill in the Blank Goals 4 5 100 1.00 Summary: Calendar Tool 4 5 100 1.00 *Scale items 3 & 4 are combined for Content Validity Index (Rubio et al., 2003) 53 DETERMINING CONTENT VALIDITY Table 7 Qualitative Responses Survey Question Question 12: Comments on the Fall Risk Screen Qualitative Responses It may be nice to explain why each of these contributing factors relate to fall prevention. Why is this important The flexibility test/screen is more balance screen clinically for me. I would say this is more functional reach/balance than flexibility. There should be more explanation as to why these factors are important to balance and preventing falls- makes it more meaningful for the pt Question 14: Comments on the My Safe and Sound Plan Section Client recognized he needs his cane, shared that he uses lots of night lights I find those are awesome points but patients need more explanation. -Medicine: maybe explain right way...take medicine at same time if appropriate. Often get patients who fail to do this. Also can you add references at end of book where to get things suggested such as pill sorter? or offer support of how to find more information. -With BP? Can you put norms or HTN risk levels or resources of American Heart Association. Loved these sections :) This section was incredibly important for the patient Question 16: Comments on the Exercises for Fall Prevention Section Again, why are these components important? Make this more meaningful for the patient Describe why these exercises might help prevent falls How many times do they do these? Example: just starting point. How long do you walk or 54 DETERMINING CONTENT VALIDITY add how they can get started or how to push yourself? Balance: SLS: I'd have a chair by patient in picture in more visible & eyes closed I usually have patients do in a corner for safety Question 18: Comments on the Home Safety Check Loved these sections :) Pt reported using night lights; caution with throw rugs This is one of my favorite sections. Its very thorough Question 20: Comments on the Summary Loved it :) Question 21: Please comment on what was most helpful in the workbook All of the workbook is clear and representative with good suggestions. Calendar for use Home Assessment Safe & Sound Plan portion I loved that all the pieces were brought together in one reference book for the patients family. Page 9 and the exercises for fall prevention section Pt thought it was helpful especially with throw rugs Question 22: Please comment on what was least helpful in the workbook All beneficial All was information needed for this particular client. N/A P 14 Vitamin D and calcium. It does say to check with your doctor, but it is contraindicated for some people, plus many people are already taking large doses of vitamins or 55 DETERMINING CONTENT VALIDITY have imbalances with other vitamins or minerals. Pt thought it was all helpful Question 23: Is there anything else that should be included in the workbook? Feel it was comprehensive How distraction/multi-tasking can increase fall risk I think patients take HEP more seriously if its meaningful to them. I verbally educated on this, but adding reasons why one needs to improve strength, balance, endurance to the book reminds them why its important each time they open the book. No Refer back to comments on exercises & screening section Resources or blank to have resources listed for patient for ex: how/where to find info on fall alert buttons or websites for BP recommendations or where to buy pill sorter. Question 26: Any additional comments Dividers for different section for easy quick reference Dividers for the different sections Over time aware resources and links change so have a blank page that list topics where therapists can complete on how to find or list website for more info like AHA (American Heart Association, etc.). This client was not very receptive to the information. He said it was all things he had been told before in various settings by various people. He chooses not to follow the recommendations (and also continues to fall nearly daily). 56 DETERMINING CONTENT VALIDITY Appendix A. My Safe and Sound Plan for Staying Falls Free workbook, version 2 (Howard, 2016). https://drive.google.com/file/d/0B_mz625D9kyLeG5XNnFSWW5LZU0/view?usp=shari ng 57 DETERMINING CONTENT VALIDITY Appendix B. Survey Questions. https://docs.google.com/a/uindy.edu/document/d/1cV3ZahtAIHhHLZQpQSL8YoP8fSNNnk2Dd 0Ca8rOHcLU/edit?usp=sharing 58 DETERMINING CONTENT VALIDITY Appendix C. My Safe and Sound Plan for Staying Falls Free workbook, version 3 (Howard, 2018). https://app.luminpdf.com/viewer/8up4w9bdzjNurhaP8/share?sk=7dbe2277-8a8d-47a08e19-e89d9676d575  ...

... Comparing Moral Reasoning Across Graduate Occupational and Physical Therapy Students and Practitioners Sarah Burke, OTS, Cheyenne Kern, OTS, Olivia Milliner, OTS, and Lindsey Newhart, OTS December 13, 2019 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Brenda S. Howard, DHSc, OTR COMPARING MORAL REASONING 1 A Research Project Entitled Comparing Moral Reasoning Across Graduate Occupational and Physical Therapy Students and Practitioners 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 Sarah Burke, OTS, Cheyenne Kern, OTS, Olivia Milliner, OTS, and Lindsey Newhart, OTS Approved by: Brenda S. Howard, DHSc, OTR Research Advisor (1st Reader) Beth Ann Walker, PhD, OTR, 2nd Reader December 13, 2019 Date December 13, 2019 Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy December 13, 2019 Date COMPARING MORAL REASONING 2 Author Note This project was awarded the University of Indianapolis Faculty Scholarship Grant on December 1, 2017. This grant provides $4,000.00 to be used toward scholarship and dissemination. COMPARING MORAL REASONING 3 Acknowledgements The authors would like to acknowledge the contributions provided by their peers throughout the research process. This group gratefully acknowledges the contribution of our second reader Beth Ann Walker, PhD, OTR. Special thanks to Allie Watkins for her research in moral development literature and interest in the historical theoretics of ethical decision making. Special thanks to Benjamin Lawson for his assistance in literature review, participant recruitment, and data collection. Their intellectual additions benefited this group and the final research presented. Special thanks to Brenda Howard, DHSc, OTR, for her guidance and leadership throughout this process. COMPARING MORAL REASONING 4 Abstract Background/ Objective: Limited ethics education has led to moral distress in practice, contributing to unethical treatment of clients, high turnover rates, and increased healthcare costs. Development of moral reasoning in OT and PT students has been significantly under researched. The purpose of this study was to analyze the differences in moral reasoning between first year and second year OT and PT students and between students and OT and PT practitioners. Method: Investigators utilized a cross-sectional study design with a convenience sample of University of Indianapolis OT and PT students and a combination of convenience and snowball sampling to recruit licensed OT and PT practitioners. Fifty-seven OT students, 35 PT students, 48 OT practitioners, and 18 PT practitioners completed the Defining Issues Test - 2 (DIT-2; Rest et al., 1999) survey. Results: With 154 participants, the study was adequately powered for a medium effect size (.30). Comparisons of N2 scores using t-tests found no differences between groups in moral reasoning schema. However, Pearsons Chi-Square analysis for a comparison of all students to all practitioners for consolidation vs. transition (stable vs. developing) moral reasoning patterns was significant between students (transitional) and practitioners (consolidated), with the greatest difference between second-year students and practitioners. Conclusion: Continual expansion of ethics content within OT and PT graduate programs may promote moral reasoning pattern development in academia with carryover into practice. Clinical experiences provide real-world opportunities necessary to progress students from transitional to consolidated thinking patterns. To improve ethics education, authors recommend active learning strategies and mentorship throughout clinical experiences. COMPARING MORAL REASONING 5 Comparing Moral Reasoning Across Graduate Physical and Occupational Therapy Students and Practitioners Occupational therapy (OT) and physical therapy (PT) practitioners can experience ethical dilemmas daily (Penny et al., 2016). Ethical dilemmas are situations that involve two or more morally appropriate courses of action that cannot both be followed (Doherty & Purtilo, 2011). An example of an ethical dilemma in practice could include when a practitioner has to decide between respecting a clients request for confidentiality and reporting information to protect the client from potential danger. Because the healthcare environment is fast-paced and ever changing, it is vital that academic programs prepare new professionals to handle the potentially complex ethical dilemmas that occur in clinical practice (Geddes et al., 2009). A practicing therapist must have developed moral reasoning skills, including cognitive problem-solving and emotional coping skills, in order to resolve the moral distress that he or she will inevitably face (Penny et al., 2016). A lack of ethics education can lead to moral distress in practice, which contributes to the unethical treatment of clients, high turnover rates, and overall increased costs of healthcare (Bell & Breslin, 2008). Development of moral reasoning in OT and PT students has been significantly underresearched. Existing research has compared moral reasoning of OT and PT students (Geddes et al., 2009), OT and PT practitioners (Kulju et al., 2013), and has explored practitioners experiences of moral distress (Bell & Breslin 2008). Researchers in Canada reviewed curricula to identify when OT and PT students received ethical content. However, investigators found no studies that examined the relationship between specific ethics content and moral development in OT and PT programs in the United States (Hudon et al., 2013). With OT and PT academic programs in the United States occurring at a graduate level and within a different health care COMPARING MORAL REASONING 6 system, more investigation is needed regarding ethics within academic curriculums and moral development in these programs (Gupta & Bilics, 2014). The primary purpose of this study was to analyze the differences in moral reasoning between first year and second year OT and PT students and between students and OT and PT practitioners. Secondary research purposes included: examining differences in moral reasoning between OT students and PT students at the University of Indianapolis (UIndy), examining a difference between years one and two for OT and PT students at UIndy, and examining a difference in moral reasoning between OT and PT students and OT and PT practitioners. The Problem of Moral Distress and Developing Moral Reasoning While in educational programs, students develop moral reasoning traits that help to combat moral distress in practice and make ethical decisions (Penny et al., 2016). Practitioners experience moral distress in practice when they know the moral appropriate course of action, but meet external barriers, internal resistance, or uncertainty (Doherty and Purtilo, 2016). Moral distress occurrences have included systemic constraints, conflicting values, questionable behavior, and failure to speak up (Kinsella et al., 2008); conflicts when working with clients and families to optimize autonomy in decision-making while remaining professional (Kassberg & Skar, 2008); and disagreements between members of the health care team and between team members and their employer (Penny et al., 2016). Penny et al. (2016) give an example of moral distress as being expected to continue services even after the client has met all therapy goals to meet productivity standards or being directed to discontinue services because of concerns about third-party payment (p. 1). Currently, ethics education is required in accredited OT and PT programs in the United States (Accreditation Council for Occupational Therapy Education [ACOTE], 2018). To bridge the gap between school and practice, increasing a students level of COMPARING MORAL REASONING 7 moral reasoning through intentional ethics education can provide tools to decrease moral distress and behaviors leading to moral dilemmas (Penny & You, 2011). Refer to Appendix for definitions of moral distress, moral reasoning, and related terms. Kohlbergs Theory of Moral Development and Measuring Moral Reasoning Kohlberg identified three levels of moral reasoning that progress throughout the lifespan (Geddes et al., 2009). The first two stages of Kohlbergs theory are defined together as preconventional morality, which focuses on the individuals internal dialogue regarding right and wrong with motives of obedience to authority or self-interest (Patenaude et al., 2003). The third and fourth stages are defined together as conventional morality, where the individual makes choices based on societal expectations or respect for the law to maintain order (Patenaude et al, 2003). The final level of Kohlbergs theory include stages five and six, which are labeled as postconventional morality (Dieruf, 2004). The postconventional stage focuses mostly on universal moral principles and being able to explain the social problems. Stage five, social contract, involves executing moral decisions for the welfare of protecting individual rights (Patenaude et al., 2003). The sixth stage is called universal ethical principles, which is defined as moral principles such as justice, equality, and dignity of human beings (Patenaude et al., 2003). Ideally, all contributing members of society would progress through the stages and reach the final level of moral reasoning, the post-conventional (Larin et al., 2009). Few adults (usually after 20 years of age) reach postconventional development (Dieruf, 2004). People who have higher education have a high correlation with high moral reasoning level (Dieruf, 2004). According to Baldwin & Bunch (2000), individuals with high levels of moral reasoning rarely demonstrate low clinical performance. Because of this hypothesis, it is beneficial to research the COMPARING MORAL REASONING 8 evolution of moral development over the course of OT and PT graduate programs to identify which aspects of curricula encourage moral and moral reasoning in practice. Since ethical and moral reasoning have very similar definitions (see Appendix), the authors use the term moral reasoning to refer to the mental process whereby practitioners make ethical decisions in practice. Factors Influencing Moral Development Investigators have successfully identified factors such as age, grade point average, gender, educational background, culture and religion, and the presence of an ethics course in a programs curriculum as influencers on moral development (Geddes et al., 2009). Age has been an indicator of moral development until late adolescence (Dieruf, 2004). As an individual grows physically, emotionally, and socially he/she naturally starts to establish opinions, values, and beliefs (Dieruf, 2004). Age, however, has controversially been identified as an influencer of moral development at the graduate school level (Penny & You, 2011). Penny and You (2011) conducted a cross-sectional study in 2011 and used the Defining Issues Test - 2 (DIT-2; Rest et al., 1999) to measure the change in moral reasoning of two OT cohorts of students enrolled in a five-year entry-level professional program. Personal interest scores were the highest in the freshman groups and the lowest in the senior groups (Penny & You, 2011). This finding indicates a shift in students schema from pre-conventional thinking to a more post-conventional style; however, post conventional thinking did not significantly increase over the years (Penny & You, 2011). This finding allowed the authors to establish age as an influencer of higher levels of moral reasoning (Penny & You, 2011). Researchers have considered whether there is a connection between an individuals level of intelligence and moral reasoning (Geddes et al., 2009). Penny and You (2011) found that there COMPARING MORAL REASONING 9 was no significant, direct correlation between grade-point average (GPA) and post-conventional scores in their cross-sectional design used the DIT to compare over 150 OT students. Geddes et al. (2009) investigated the moral development of both OT and PT students over the course of their respective programs and also refuted multiple influencers of moral development including GPA. The Role of Educational Programs in Fostering Moral Development Dieruf (2004) determined that moral reasoning skills have been a foundational part of educating health care professionals; however, too little time has been dedicated to engaging students in critical thinking and problem solving. OT and PT faculty have also reported a connection between students moral reasoning skills and ethical decision making in clinical practice (Burrus et al., 2007). Investigators who found differences in the development of postconventional reasoning noted the presence of an intentional ethics course (Penny & You, 2011). Edwards et al. (2012) came to a similar conclusion, suggesting that graduate students exposure to intentional ethics courses as part of OT/PT curricula correlated with an increase in ethical decision making in the professional setting. The terms moral reasoning, moral decision making, ethical reasoning, ethical decision making, and ethical problem solving have a considerable amount of overlap; see Appendix for definitions. After conducting a survey, Shive and Marks (2008) clarified that increasing the required course work directly related to ethics education was the most common method used by health professions educators to increase ethical awareness. Dieruf (2004) and Penny and You (2011) highlighted significant gaps in moral and ethical education of students pursuing careers in OT and PT. In order to fulfill this need, Penny and You (2011) recommended that students participate in an ethics course directly related to the profession. Some researchers have deemed COMPARING MORAL REASONING 10 that actively engaging students in activities like examining case studies, procedures, and policies can also be effective in developing moral reasoning skills (Koharchik et al., 2017). Faculty must continue to explore ways that students are granted outside experience to appreciate the context-specific dilemmas that have arisen for practicing therapists when they have been required to choose between two or more morally appropriate courses of action that cannot both be followed (Doherty & Purtilo, 2011; Evenson et al., 2015). Ensuring that practices taught in the classroom are used in a clinical setting is vital to protect employers, clients, and the professions (Koharchik et al., 2017). There is a great deal of responsibility and ethical decisionmaking within the clinical setting. Researchers have utilized the Defining Issues Test (DIT-2; Rest et al., 1999) to measure moral development from year-to-year within OT and PT programs to determine if ethics education can improve moral reasoning skills (Dieruf, 2004). Geddes et al. (2009) analyzed additional influencers of moral development with the use of the DIT-2, and found that previous education, gender, cohort, and program did not have a significant influence on moral development (Geddes et al., 2009). By conducting these studies, researchers found that students in both the OT and PT cohorts demonstrated a significant increase in moral reasoning mean scores over time (Geddes et al., 2009); however, there were no significant differences in moral development between the two professions (Dieruf, 2004). Literature Review Summary Ethical dilemmas are a pressing concern in the contemporary rehabilitation setting because they contribute to burnout, high turnover rates, and overall increased costs of healthcare. Researchers have suggested the need to examine and expand ethics education in the OT and PT curricula in order to influence moral development and prepare students for ethical problem COMPARING MORAL REASONING 11 solving. The current study adds to the body of knowledge on experiences that influence moral development by examining differences in moral reasoning between occupational and physical therapy students with differing levels of graduate education and practitioners. By understanding moral reasoning development, health care educators can consider how to better foster growth in ethical problem solving (Burrus et al., 2007; Penny & You, 2011). Method Investigators implemented a cross-sectional research design utilizing a sample of convenience from the students in the UIndy OT and PT programs; and OT and PT practitioners through a direct email to UIndy alumni selected at random from a combined list of OT and PT graduates, and snowball sampling through alumni social media pages. Ethics This study was approved by the University of Indianapolis Human Research Protections Program as Exempt (UIndy Study #0894). Recruitment Investigators recruited individuals from the first- and second-year OT cohorts at UIndy in the fall of 2018. There were 125 students within two Doctorate of Occupational Therapy (OTD) cohorts and two Masters of Occupational Therapy (MOT) cohorts at the time of recruitment. The first-year OTD cohort was comprised of 44 students (42 females, 2 males) and the second year OTD cohort had 44 students (43 females, 1 males). The first-year MOT cohort was comprised of 18 students (15 females, 3 males) and the second-year cohort had 19 students (17 females, 2 males). The OTD and MOT programs were mostly composed of white females. Males made up 6.5% of the four OT cohorts included in recruitment, and less than 10% (12 students) identified as a race/ethnicity other than White. The mean ages of the MOT cohort first and second year COMPARING MORAL REASONING 12 students were 29.6 and 28 years, respectively. The mean ages of the OTD first and second year cohorts were 23.3 and 24.6 years old, respectively. Investigators also recruited individuals from first- and second-year PT cohorts at UIndy. The first-year doctor of physical therapy (DPT) program was composed of 49 students (32 females, 17 males). The second year DPT cohort was comprised of 47 students (29 females, 18 males). The DPT program was composed mostly of white females. Males made up 36.5% of the two cohorts included in recruitment, and 4% (4 students) identified as a race/ethnicity other than White. The mean age of the first-year cohort was 23 years old, and the second-year cohort mean age was 24 years old. Individuals from the first- and second-year cohorts of the OT and PT programs were recruited for this study via email and social media. Emails were sent to the students from the targeted cohorts, and social media promotions were posted on the UIndy OT and PT program Facebook pages intermittently while the survey was live. Investigators also recruited practicing occupational and physical therapists. The OT and PT practitioners were recruited through email blast and snowball sampling. Emails were sent to 400 alumni (200 OT practitioners, 200 PT practitioners) who were randomly selected from a list of OT and PT alumni of UIndy programs. Via the email, the randomly selected alumni were encouraged to forward the email to colleagues to facilitate more participants. Social media promotions were also posted on the UIndy OT and PT alumni Facebook pages while the survey was live. The inclusion criteria for OT and PT students included enrollment at UIndy in the first or second year of their respective programs. Participants from the remaining academic programs offered at UIndy were excluded. Participants were only included in the study if they were first year or second year OT or PT students at UIndy. Third year PT and OT students were excluded COMPARING MORAL REASONING 13 from this study due to their participation in clinical education rotations during the completion of the study. To participate in this study, practitioners self-identified as licensed OT and PT practitioners. Occupational Therapy Assistants and Physical Therapy Assistants were excluded from this study because recruitment efforts did not include OTA or PTA students. Intervention The College of Health Sciences at UIndy encompasses both the School of Occupational Therapy and Krannert School of Physical Therapy. UIndy offers two entry-level occupational therapy education tracks. One program is on track to receive a masters in occupational therapy (MOT) while the other is on track to receive a doctorate in occupational therapy (OTD). Both programs receive an identical ethics curriculum and are held to similar national certification standards. Education related to ethics is integrated into a five-part Issues series. Each course in the series incorporates ethics in a slightly different way to expand student knowledge and experience on the topic. Issues I (OTD/MOT 570) introduces the OT Code of Ethics, Issues II (OTD/MOT 571) introduces students to ethical problem solving, Issues III (OTD/MOT 572) prepares students for documenting in practice, in Issues IV (OTD/MOT 574) the Code of Ethics are reviewed with clinical emphasis, and finally, Issues V (OTD/MOT 575) educates students about business and professionalism related to ethics. UIndys Krannert School of Physical Therapy (KSPT) offers a Doctor of Physical Therapy (DPT) degree. The education related to ethics for DPT is incorporated through one course that is taken during the second semester of the first year. The course content includes lectures about the code of ethics for physical therapy, ethical dilemmas within the field, and uses the Realm- Individual Process-Situation (RIPS) Model of Ethical Decision Making to facilitate COMPARING MORAL REASONING 14 navigation of ethical dilemmas (Swisher et al., 2005). The code of ethics for physical therapy is similar to that of the code of ethics for occupational therapy in that it focuses on the rights and care of recipients of services. However, the physical therapy code of ethics focuses more on the business aspect of health care (Verma et al., 2006). Instrument The DIT-2, developed by Rest and colleagues (1999), is the most-used tool to measure Kohlbergs Moral Development Theory (Dieruf, 2004; Kohlberg & Hersh, 1977; Rest et al., 1999). The DIT-2 requires the decision maker to answer a series of multiple-choice questions by rating and ranking a series of responses to several stories that cover a variety of ethical dilemmas and social issues (Rest et al., 1999). This ranking is depicted by N2 scores, which represents the moral schema discerned through the survey scenarios. The DIT-2 also collects demographic information including age, sex (male or female), race/ethnicity, and level of education. According to Kohlberg, the decision maker reasons based on a moral schema of personal interest, maintaining norms, or post-conventional reasoning (Rest, 1994). Post-conventional reasoning is the most advanced; it looks beyond the immediate rewards of personal interest and is a more absolutist application of conventional rights and wrongs that considers the complexities of ethical dilemmas compared to maintain norms schema (Edwards et al., 2012). Dieruf (2004) stated that the higher the individual can process complex information, the more likely the individual is able to understand and make decisions ethically in the midst of the ethical dilemma. Having greater ability to make ethical decisions makes post-conventional reasoning the ideal level for OT and PT students and professionals. Using the DIT and the second edition, DIT-2, researchers have been able to analyze how moral reasoning changes during various educational COMPARING MORAL REASONING 15 programs (Rest et al., 1999). The DIT-2 has demonstrated improved validity due to scoring the data in a different way than the original DIT (Rest et al., 1999). Procedures Investigators began recruitment in August 2018 by sending emails and social media postings to all first and second year UIndy OT and PT students, and 200 randomly selected UIndy alumni from each of the OT and PT programs, with snowball sampling of OT and PT practitioners in the community through inviting practitioners to share the survey link. Participants were asked to complete the DIT-2 online survey between September 11th to October 9th, 2018. Raw data derived from the DIT-2 was then sent to the Center for Ethical Study Development at the University of Alabama for scoring. Next, investigators analyzed the scored data using Qualtrics and SPSS version 25 (IBM Corp., 2017) to compare groups. Sample Size, Power, and Precision The total sample size required to achieve statistical significance with ANOVA analysis was 134 participants with medium effect size (0.30), alpha error at p<0.05, and power set to 0.95 (Faul et al., 2007). For between groups comparison, a sample size of 26 was needed with the effect size at large (0.50), alpha error set at p<0.05, and power set at 0.80. Measures and Covariates Data were analyzed to identify between-groups comparisons of means using ANOVA, Kruskal-Wallis, independent samples t-test, and Mann-Whitney U test. Pearsons Chi-Square was employed for between-groups comparison of nominal data. Investigators compared means of N2 scores of moral reasoning for all six groups using one-way ANOVA. Then investigators compared first year OT and PT students to second year OT and PT students, Investigators also compared OT students and practitioners as a group to PT students and practitioners as a group. COMPARING MORAL REASONING 16 Finally, investigators compared all of the OT student participants in the study to all of the practicing occupational therapists in the study, and all of the PT student participants in the study to all of the practicing physical therapists in the study; along with all students vs. all practitioners. Covariates included examination of the impact of age, gender, and educational level on moral reasoning using an ANOVA test. Results This was a cross sectional design using the DIT-2 to compare differences in moral reasoning between first year and second year OT and PT students and between students and OT and PT practitioners. This study utilized a sample of convenience with UIndy OT and PT students, and OT and PT practitioners recruited from alumni and snowball sampling. Participants The DIT-2 was open from September 4, 2018 and closed until October 9, 2018. Two hundred thirty-one surveys were received. The dataset was sent to the Center for Ethical Study for scoring, and returned on November 6, 2018. Seventy-two surveys were discarded due to incompletion, resulting in 159 participant questionnaires for analysis. Five additional respondents were eliminated due to incomplete data. This culling resulted in 154 complete questionnaires for final analysis. Of the 154 respondents who completed a survey meeting all inclusion criteria, 18 participants identified as male and 136 participants identified as female. Data were gathered from 25 first-year OT students, 10 first-year PT students, 32 second-year OT students, 24 second-year PT students, 46 occupational therapy practitioners, and 17 physical therapy practitioners. For a full description of participant demographic information, refer to Table 1. Data Analysis COMPARING MORAL REASONING 17 Investigators completed checks of data integrity, including frequencies and distributions. The full dataset and data groupings were normally distributed as checked with Shapiro-Wilk. To compare students year-to-year, a one way ANOVA was conducted. A comparison of all six groups N2 scores using a one-way ANOVA did not achieve significance (p>.05). A comparison of N2 scores using Kruskal-Wallis was computed and also did not reach significance (p>.05). A grouped comparison of all students versus all practitioners N2 scores were normally distributed. A two-tailed t-test comparing means of N2 scores between students and practitioners was not significant (p=.968). A comparison of N2 scores using a Mann-Whitney U test was conducted. Results indicated retention of null hypothesis regarding the N2 score median comparison (p=.765). A grouped comparison of all OT students and OT practitioners versus all PT students and PT practitioners was normally distributed using Shapiro-Wilk and Kolmogorov-Smirnov tests. A two-tailed t-test comparing N2 scores between groups was not significant (p<.05). A grouped comparison of all first years, all second years, and all practitioners was normally distributed using Shapiro-Wilk and Kolmogorov-Smirnov tests. A 2-tailed t-test indicated no significant differences in N2 scores between first- and second-year students (p<.05 with equal variances not assumed). A 2-tailed t-test comparing all first-year students to practitioners and all second years to practitioners also yielded no significance (p<.05 respectively, with equal variance not assumed). The consolidation and transition classifications of moral reasoning differentiate problem solving thought processes from a consistently synthesized and confident pattern of thinking (consolidated) to a varied pattern of thinking (transitional; Bebeau & Thoma, 2003). A COMPARING MORAL REASONING 18 Pearsons Chi-Square analysis comparing the Consolidation/Transition variable of all six groups did not reach significance (X [5, n=154] =10.445, p= 0.064). However, a comparison of all students versus all practitioners for Consolidation/Transition was significant (X [1, n=154] = 8.668, p = .003). A closer examination of all first-year students, all second-year students, and all practitioners indicated significant results (X [2, n=154] = 8.686, p = .013; see Table 2). A significantly larger portion of OT and PT students (63.7%) were transitional in their approach to moral reasoning compared to all practitioners (39.7%) who demonstrated a consolidated moral reasoning pattern. A post hoc Bonferroni correction (p=.0167) indicated the significant difference was between second-year students and all practitioners (X [1, n=119] = 7.183, p = .007). See Table 3 for results. Discussion This study aimed to analyze moral reasoning in first year and second year OT and PT students and from OT and PT students to OT and PT practitioners. Occupational therapy and physical therapy students and practitioners were surveyed and results were compared cross sectionally to distinguish differences between moral reasoning at different stages of professional development. Although no differences were found between groups regarding moral reasoning schema, there were significant differences between students and practitioners regarding use of a consolidated or transitional pattern of moral reasoning. Patterns of moral reasoning have been defined by the ability or inability of an individual to discriminate between types of moral reasoning when presented with a complex moral dilemma (Bebeau & Thoma, 2003). Moral reasoning has been organized into different types of moral schemas consisting of personal interest, maintaining norms, and postconventional (Bebeau & Thoma, 2003). Transitional thinking patterns have suggested the inability to discriminate COMPARING MORAL REASONING 19 between moral schema typed items, resulting in developmental disequilibrium and no evidence of schema preference (Bebeau & Thoma, 2003). Contrarily, consolidated thinking patterns indicate the ability to discriminate among moral schema typed items, resulting in a clear demonstration of preference for a specific type of moral reasoning (Bebeau & Thoma, 2003). Researchers hypothesized that as students received more education and more experience throughout their doctoral program, moral reasoning would significantly improve between firstand second-year students. Highest level of moral development schema was expected in current practitioners. However, data indicated that OT and PT students showed no significant difference in moral reasoning schema when comparing first years to second years and when comparing students to OT and PT practitioners, as measured by N2 scores. The pattern of moral reasoning, however, varied between students and their practitioner counterparts. Students showed a greater percentage of transitional moral reasoning patterns, whereas practitioners demonstrated a greater percentage of consolidated patterns of thinking. Results revealed a change in pattern occurring between second year students and practitioners from transitional to consolidated moral reasoning. Because Penny and You (2011) hypothesized that increased age leads to higher levels of moral reasoning, results indicating no difference in moral schema levels between students and practitioners may reflect the lack of a significant age gap between students and practitioners within this study. Other than age playing a role in moral reasoning, no studies have examined the comparison of moral schemas from OT and PT students to practitioners. More research is needed to investigate if age is the main factor in moral schema development, or if factors such as exposure to clinical experience play a bigger role in OT and PT development. COMPARING MORAL REASONING 20 Although investigators of previous studies did not compare moral schemas and patterns of OT and PT students to practitioners, studies exist analyzing differences among OT and PT students moral schemas prior to and after completion of educational programs. Penny and You (2011) utilized the DIT-2 tool to determine change in students moral reasoning between first and third years of OT school at a United States university and discovered no significant difference in post-conventional thinking between students. Additionally, Dieruf (2004) showed no difference of DIT scores in OT and PT students before and after a two-year bachelors degree educational program at a United States university. Both Penny and Yous (2011) and Dierufs (2004) results were consistent with this present studys results that indicated no difference in moral reasoning schema between first year and second year OT and PT students. In contrast, Geddes et al. (2009) concluded through a sample of 288 OT and PT students that moral judgment significantly improved after completion of respective two-year bachelor degree programs at a Canadian university. Inconsistency in results with the present study could be linked to the emphasis on the development of ethical content contained within the OT and PT programs analyzed. Geddes et al. (2009) analyzed moral development in OT and PT programs that had significantly expanded ethics content within the curriculum. However, Dieruf (2004) analyzed OT and PT programs that did not include Schlaefli, Rest, and Thomas (1985) recommendation of 3 to 12 weeks of ethical instruction. Contrasting these two studies suggests that a correlation might exist between increased moral judgment scores among OT and PT students and a well-developed ethics curriculum. As the landscape of occupational and physical therapy educational programs has changed from bachelor level programs to post-graduate degree programs, development of ethical content requires expansion as well. COMPARING MORAL REASONING 21 Although moral schema differences were not found between students and practitioners within this study, a significant difference was discovered between students and practitioners in regard to transitional and consolidated patterns of moral reasoning, respectively. These patterns were indicative of how strongly synthesized and confident patterns of moral thinking were in each group. Since this study indicated a significantly greater number of OT and PT students employed a transitional pattern of thinking, a need for real-life clinical experience may be necessary to obtain the mature consolidated thinking pattern that OT and PT practitioners were found to possess. Furthermore, the mature (consolidated) pattern of moral thinking among OT and PT practitioners suggests a larger role for clinical experience in moral reasoning development, as opposed to other factors such as age and previous education level. Implications First-year OT and PT students demonstrated no significant difference in moral reasoning schema when compared to second year students, who have received an extra years worth of ethics education. This finding suggested that educational experiences alone did not prompt significant change in moral reasoning schema nor patterns in this sample. However, the literature has indicated that educational programs have continued to play a significant role in moral reasoning development. Both Dieruf (2004) and Geddes et al. (2009) emphasized the importance of expanding ethical content within curricular programs to increase moral reasoning. The importance of ethics in education is to promote ethics in practice and prevent unethical practice in the field (Bell & Breslin, 2008). To prevent unethical practice in clinical fields, OT and PT programs may need to expand intentional ethical content. This could include specified ethics courses, interprofessional ethics education, and interactive case studies with ethical review. COMPARING MORAL REASONING 22 Findings indicated a change from transitional patterns of thinking in OT and PT students to consolidated patterns in OT and PT practitioners. These findings suggest the need for clinical experience to develop mature patterns of thinking. Participants of the current study varied in regard to time in the graduate programs and clinical exposure. Because the significant change from transitional to consolidated thinking patterns occurred between second year students and practitioners, results suggested that clinical exposure played more of a role in moral reasoning pattern development than students time in the program. Students often work on case studies during class; however, they lack the implementation of interventions on real life clients. When students experience exposure to repercussions of interventions on actual clients, students gain the opportunity to consolidate thinking into concrete realities. OT and PT programs currently utilize clinical education as a method to provide this exposure; however, most longer-term clinical experiences are completed near the end of program when ethical education has already ceased. Incorporating clinical experiences into the educational component of OT and PT programs through competencies and client panels allows for real life moral reasoning exposure; thus, potentially helping to consolidate student moral reasoning. Additionally, providing ethics rounding and mentorship (Erler, 2017) may promote development of moral reasoning patterns in a supportive environment as students enter the clinical setting. Implications for future research include a larger sample size with multi-site participation, in order to more adequately power the results and gain greater participant diversity. Further, perspectives of interprofessional collaboration can increase moral reasoning patterns for both OT and PT practitioners (Interprofessional Education Collaborative, 2016) and could be explored with future research. A longitudinal study across multiple classes and programs may find further connections between ethics content, moral reasoning development, and ethical practice. This COMPARING MORAL REASONING 23 investigation could be completed in conjunction with neighboring universities across a network of practitioners through consistency of ethics content and delivery. Qualitative research is recommended to gather evidence on experience in practice and felt adequacy of preparation through ethics education. Researchers recommend the involvement of new graduates in survey of helpful coursework as well application in the field. A comprehensive review of ethics content in US curricula may identify strengths and weaknesses across preparation of students entering the field. Limitations Responses were collected from a largely homogenous sample with a preponderance of White women. Demographic question options for sex were limited to male and female, with no additional option for other. Although practitioner locations varied, student responses were restricted to one university located in the midwestern United States. Small group sizes of PT practitioner and first year PT student participants limited diversity of sample further. In addition, responses of participants may have been affected by a technical error that had the survey closed for 5 days during its open period. This was corrected by re-posting the recruitment link with an announcement that the survey was open again. Lastly, the small sample size may have resulted in type II error with false insignificant findings. Conclusion The purpose of this study was to analyze the differences in moral reasoning between first year and second year OT and PT students and between students and OT and PT practitioners. Through comparisons of first year and second year students and practitioners, investigators discovered no significant difference in moral reasoning schemas. However, in comparing patterns of moral reasoning, investigators found significant differences; specifically, students COMPARING MORAL REASONING 24 utilized transitional patterns of moral reasoning and practitioners implemented consolidated patterns of moral reasoning. Although generalizability of this study is limited, results suggest that infusing the educational curriculum with clinical applications with a variety of pedagogical methods may be useful in facilitating development of moral reasoning. Similarly, providing support for moral reasoning through mentorship in clinical education may also facilitate consolidation of moral reasoning patterns. As understanding of how to facilitate moral reasoning improves, educational programs can better prepare OT and PT students to make moral decisions in clinical practice. Further research is indicated to better prepare and support practitioners in their moral and ethical development. COMPARING MORAL REASONING 25 References Accreditation Council for Occupational Therapy Education (ACOTE). (2018). 2018 Accreditation Council for Occupational Therapy Education (ACOTE) standards and interpretive guide (effective July 31, 2020). https://www.aota.org/~/media/Corporate/Files/EducationCareers/Accredit/StandardsRevi ew/2018-ACOTE-Standards-Interpretive-Guide.pdf Baldwin, D. C., & Bunch, W. H. (2000). Moral reasoning, professionalism, and the teaching of ethics to orthopaedic surgeons. Clinical Orthopaedics and Related Research, 378, 97103. Bebeau, M. J., & Thoma, S. J. (2003). Guide for DIT-2. Center for the Study of Ethical Development. Bell, J. & Breslin, J. M. (2008). Healthcare provider moral distress as a leadership challenge. JONAs Healthcare Law, Ethics, and Regulation, 10(4), 9499. http://doi.org/10.1097/NHL.0b013e3181957ad9 Burrus, R. 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Journal of Allied Health, 35(2), 109-115. COMPARING MORAL REASONING 30 Appendix: Glossary Consolidated - An established and consistent frame of thinking under which an individual morally reasons through a situation (Bebeau & Thoma, 2003). Ethical decision making - Identifying a problem, analyzing it, and finding resolution. that produces a caring response to an ethical issue (Doherty & Purtilo, 2016). See also ethical problem solving. Ethical dilemma - A common type of situation that involves two (or more) morally correct courses of action that cannot both be followed (Doherty & Purtilo, 2016, p. 66). Ethical problem An issue in which ethical principles are at risk and one must decide regarding priorities for action. May also be referred to as an ethical question. Places focus on ones role as a moral agent and those aspects of the situation that involve moral values, duties, and quality-of-life concerns in an effort to arrive at a caring response (Doherty & Purtilo, 2016, p. 56). Ethical problem solving Making decisions for action based on the agreed-upon principles and standards of ones profession. Doherty & Purtilo (2016) outline a six-step process including (1) gathering relevant information, (2) identifying type of ethical problem, (3) utilizing ethical theories to analyze the problem, (4) consider practical alternatives, (5) carry out resolution, and (6) evaluate and reflect. Ethical reasoning - A mode of reasoning used to recognize, analyze, and clarify ethical problems that arise. Helps clinicians make decisions regarding the right thing to do in particular case (Doherty & Purtilo, 2016, p. 77) and provides the moral basis for professional behaviors and actions. The focus is not on what could be done for the patient, rather on what should be done (Doherty & Purtilo, 2016, p. 77). COMPARING MORAL REASONING 31 Moral decision making - Making decisions based on ones own values, sense of duty, and character. see also ethical problem solving and ethical reasoning (Doherty & Purtilo, 2016). Moral distress - Occurs when the moral agent knows what the morally appropriate course of action is but meets external barriers, internal resistance, or high level of uncertainty (Doherty & Purtilo, 2016, p. 66). Moral reasoning - Making moral judgments in context-dependent situations. Moral reasoning and morality require consideration of personal values, duty, and character. Moral reasoning is needed to address ethical decision making in light of professional codes of ethics (Doherty & Purtilo, 2016). Moral schema- An approach to problem solving when faced with moral decision making. There are 3 levels of moral reasoning: preconventional morality, conventional morality, and post-conventional morality (Geddes et al., 2009) Moral judgment - A type of decision making required when the particulars of a specific situation arise (Doherty & Purtilo, 2016, p. 8). Morality - Guidelines designed to preserve the very fabric of their society (Doherty & Purtilo, 2016, p. 7) and is relational and context-dependent (Doherty & Purtilo, 2016). Patterns of moral reasoning - Frame of thinking when processing moral dilemmas. Can be consolidated or transitional (see definitions of transitional and/or consolidation; Bebeau & Thoma, 2003). Transitional - A failure to consistently process and problem solve moral decisions under one moral schema. This is a marker of developmental disequilibrium (Bebeau & Thoma, 2003). COMPARING MORAL REASONING 32 Table 1 Participant Characteristics (n=154) Characteristics OT Y1 n(%) OT Y2 n(%) PT Y1 n(%) PT Y2 n(%) OT n(%) PT n(%) Total n(%) Total 25(16) 32(21) 10(6) 24(16) 46 (30) 17 (11) 154(100) 1(6) 1(6) 1(6) 10(55) 1(6) 4(21) 18(12) Female 24 31 9 14 45 13 136(88) 21-30 24 30 10 24 24 6 118 31-40 1 1 0 0 15 2 19 41-50 0 1 0 0 5 6 12 51-60 0 0 0 0 2 3 5 African American or Black 2 1 1 0 0 0 3 Asian or Pacific Islander 1 0 1 1 1 0 4 Caucasian (white; other than Hispanic) 22 29 9 23 45 17 145 Hispanic 1 0 0 0 0 0 1 Hispanic/Caucasi an 1 0 0 0 0 0 1 0 2 0 0 0 0 2 Gender Male Age Race/Ethnicity* Other** COMPARING MORAL REASONING *Participants were instructed to check all that apply. **Other: Participants wrote in Multiracial and Wish not to specify. 33 COMPARING MORAL REASONING 34 Table 2 Moral Reasoning Patterns, Consolidation vs. Transition: All First Year Students and all Second Year Students v. All Practitioners Group Consolidation n (%) 13 (37.1%) 35 (100%) 20 (35.7%) 56 (100%) All Practitioners 25 (39.7%) 38 (60.3%) Pearsons Chi-Square: X (2, n=154) = 8.686, p = .013 63 (100%) All First Year Students Transition n (%) 22 (62.9%) All Second Year Students 36 (64.3%) Total COMPARING MORAL REASONING 35 Table 3 Moral Reasoning Patterns, Consolidation vs. Transition: Group Comparison Using Post-hoc Bonferroni Correction Group First Year Students v. Second Pearson Chi-Square Value Asystematic 2-sided (degrees of freedom) significance* .019 (1) .890 4.842 (1) .028 7.183 (1) .007 Year Students First Year Students v. Practitioners Second Year Students v. Practitioners *Post-hoc Bonferroni correction of Second Year Students v. Practitioners: X (1, n=119) = 7.183, p = .007. Italics indicate significant finding.  ...