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... Running Head: COGNITIVE SOCIAL GROUPS Hess 1 Cognitive Based Social Groups for Guests at Independent Adult Day Care Center Doctoral Capstone Project Emily Hess May 2021 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: Christine Kroll COGNITIVE SOCIAL GROUPS Hess 2 Abstract In adult day care settings, occupational therapists play a unique role in providing individuals with dementia opportunities to engage in occupations. This project aims to address the occupational engagement of guests with dementia at an adult day center using a cognitive-based approach to activity design. Twelve individuals at an adult day center with a formal diagnosis of dementia participated in the Allen Cognitive Level Screen (ACLS), and the individuals and their caregivers completed an interest checklist. The activity binder created considered the results of the ACLS and interest checklist. Due to staffing issues, only one staff member completed all training on how to facilitate group activities using the activity binder. I observed a staff member facilitating activities and assessed the engagement levels of the individuals with dementia using the Group Observational Measurement of Engagement (GOME). Average engagement scores in three activities ranged from 2.875 to 3.25 out of 4. Staff knowledge and confidence were also measured before and after training using a survey. The staff member improved from 25 points to 30 points. Additionally, staff satisfaction was also measured using a survey. The staff member scored each item on the survey as a 5 very satisfied. The present research study found that utilizing a cognitive-based approach to activity design allowed individuals at a day center to engage at a higher level in group activities; moreover, providing staff with adequate training materials improved confidence and knowledge. COGNITIVE SOCIAL GROUPS Hess 3 Introduction Alzheimer's disease (AD) is a degenerative brain disease (Alzheimer's Association, 2019) that has a significant impact on an individual's ability to function in their day-to-day lives. According to the Centers for Disease Control and Prevention (CDC) (2019), AD is the most common form of dementia. As of 2014, more than five million people in America were living with AD, and researchers anticipate that this number will triple to about 14 million people by 2060 (CDC, 2019). According to the Alzheimer's Association (2019), as AD progresses, people are no longer able to participate in activities they feel define them as individuals. Eventually, AD progresses to the point where the person can no longer perform basic bodily functions (Alzheimer's Association, 2019). AD impacts peoples cognitive abilities substantially and subsequently causes cognitive disability. According to Claudia Allen, cognitive disability is a "global incapacity to do universal human activities. A biologically-determined lack of attention impairs awareness of environmental cues but may spare memories of prior knowledge (Allen, 2002 as cited in Cole & Tufano, 2008, p.185). Allens frame of reference, Allens Cognitive Levels (ACL), focuses on how cognition impacts activity demands and the effects of physical and social contexts (Cole & Tufano, 2008). It is critical for occupational therapists working with this population to analyze how cognitive abilities impact occupational performance. When discussing AD and how it impacts people's occupational performance and engagement, it is also critical to consider the definitions of both cognition and functional cognition. Cognition includes abilities related to information-processing functions and skills related to attention, memory, and executive functions (American Occupational Therapy Association [AOTA], 2017b). Functional cognition is associated with thinking and processing skills that people need to "accomplish complex COGNITIVE SOCIAL GROUPS Hess 4 everyday activities such as household and financial management, medication management, volunteer activities, driving, and work" (AOTA, 2017b, p. 1). Therefore, occupational therapy interventions need to focus on the link between cognitive skills, functional performance, and the environment (AOTA, 2017b). It is critical to consider the lifespan frame of reference (FOR) because of the impact AD has on an individuals later life development. This FOR is appropriate to use with AD, as it focuses on normal development throughout each stage of development across the lifespan(Cole & Tufano, 2008). The lifespan FOR allows occupational therapists to assess occupational performance relative to age-appropriate skills (Cole & Tufano, 2008). When applying the lifespan FOR, the definition of dysfunction and disability is important. In this FOR, disability is when a person fails to "develop age-appropriate skills or resolve the dilemmas, conflicts, or polarities appropriate for one's stage of life" (Cole & Tufano, 2008, p. 218). Due to cognitive and physical limitations, people with AD may not participate in activities they used to participate in previous life stages, including leisure, social participation activities, and activities of daily living (ADLs). According to the AOTA (2011), occupational therapists can create changes in the environment and focus on the individual's current abilities to achieve maximal occupational engagement. The Model of Human Occupationa (MOHO) thoroughly addresses occupational engagement of those with AD. MOHO focuses on the actual person and how their "environment contributes to one's source of motivation patterns of behavior and performance." (Cole & Tufano, 2008, p. 95). When working with people who have AD, it is important to consider how their different environmentssuch as adult daycare or the home, and environmental factors such as social, economic, and cultural factors, impact their occupational performance. When COGNITIVE SOCIAL GROUPS Hess 5 delivering any form of occupational therapy services with this model, it is also critical to consider habituation, volition, and performance capacity. People with AD may have limited occupational skills and performance because of cognitive limitations. Their occupational skills and performance may decline as the disease progresses. Additionally, people with AD may have a compromised occupational identity because of difficulties with conceptualizing their sense of self and what they wish to be as an occupational being, due to their cognitive abilities. Regarding occupational adaptation, people with AD may have problems constructing a positive occupational identity and achieving occupational competence in their environments due to their cognitive abilities. Additionally, occupational therapists can impact the environment of those with AD to improve their occupational engagement and participation using nine different therapeutic strategies outlined by Kielhofner (2009). Being able to participate in enjoyable activities and being able to do activities with others is essential to the health and well-being of people across the lifespan (Berger et al., 2013). By encouraging social participation and leisure-based activities, individuals with AD can participate in enjoyable activities. Social participation involves the connection between occupations that support someones wanting to engage in community and activities involving their families, peers, and friends (Gillen & Boyt Schell, 2014 as cited in AOTA, 2014). Leisure activities are nonobligatory activities that are "...intrinsically motivated and engaged in during discretionary time, that is, time not committed to obligations such as work, self-care, or sleep" (Parham & Fazio, 1997, p. 250 as cited in AOTA, 2014, S21). Individuals with AD need opportunities to participate in the occupations of social participation and leisure. Occupational therapists can accomplish this by developing programs that consider not only cognitive abilities but also personal interests. COGNITIVE SOCIAL GROUPS Hess 6 Researchers have shown a link between leisure activities, social relationships, and health (Chang et al., 2014). Allowing individuals with dementia to successfully engage in meaningful activities, such as social and leisure activities, leads to positive health outcomes (Mansbach et al., 2016; Tak et al., 2014). Researchers have also shown that the provision of social activities has positive impacts on the quality of life of older adults (Amiri et al.,2017). Quality of life domains impacted most by successful engagement in leisure and social activities are physical health, mental health, overall health, and vitality (Horowitz & Vanner, 2010). Chen and Chippendale (2018) also argue that participating in leisure activities allows people to achieve occupational balance, which has a significant impact on the health and well-being of individuals. These researchers demonstrated a need for individuals with dementia to have opportunities to participate in meaningful activities because it directly impacts the health outcomes of these individuals. Allowing individuals with dementia to participate in meaningful occupations will allow them to achieve occupational balance, which will lead to positive health outcomes such as improved quality of life. For these activities to be meaningful to an individual, the individual's interests and abilities need consideration. Gitlin et al. (2008) explain that one must tailor activities to the individuals likes and dislikes and their cognitive abilities; when activities are interesting and appropriate, a reduction in depressive and agitated behaviors occurs. One method to support engagement in leisure and social participation activities while also considering an individual's cognitive abilities within this population is the Montessori method. In this approach, activities meet both the individuals needs and capabilities using tailored activities utilizing everyday objects (Camp et al., 2017). Several researchers have found that using the Montessori method with people with dementia has a positive impact on affect and engagement in activities and the quality of life (Camp et al., 2017; COGNITIVE SOCIAL GROUPS Hess 7 Wilks et al., 2019). The Montessori approach allows for full consideration of the capabilities and interests of individuals who have dementia. This approach allows occupational therapists to meet the needs and capabilities of individuals with dementia, and it allows these individuals to participate in desired occupations, such as social participation and leisure. Activities offered to people need to be wide in variety, engaging, relevant, and meaningful (Tak et al., 2014). Additionally, to get people with AD to socialize, activities need to be cognitively stimulating (Smallfield & Heckenlaible, 2017). These researchers highlighted the importance of appropriate, meaningful, and engaging activities for individuals with dementia. Additionally, it is critical for occupational therapists and other medical professionals to consider the autonomy of people when offering activities and giving care (Berenbaum et al., 2017). One way to accomplish this is to gather information about the individual's past and current roles and routines and interests. According to Toit and Buchanan (2018), by listening to the stories of people with dementia, the care that clinicians give to them can be more client-centered. It is critical to listen to these clients' stories and understand the cultural differences among the population so that interventions are more engaging and relevant for the clients (Toit and Buchanan, 2018). In an adult day care setting, an occupational therapist plays a unique role in providing older adults with opportunities to engage in occupations such as leisure and social participation. This project aims to address the occupational engagement of guests with dementia at an adult day center using a cognitive-based approach to activity design. Methodology Participants This program included twelve participants. All participants had a formal diagnosis of dementia and regularly attended the day center three times a week. I initially trained four staff COGNITIVE SOCIAL GROUPS Hess 8 members on using the activities outlined in the activity binder I designed; the staff members also received education on the implications of ACLs. However, only one staff member remained during the time of data collection. Procedures ACLS To develop appropriate activities for the guests at the day center, I assessed the cognition of tweleve guest using the Allen Cognitive Level Screen (ACLS). A licensed occupational therapy practitioner confirmed the ACLS results. The screening tool consists of learning three different leather lacing stitches that increase in difficulty (Allen et al., 2007). Additionally, the client has a choice to complete the screening by either using the ACLS-5 or the Large ACLS-5 (Allen et al., 2007). The completion of the three stitches requires the client to attend, understand, utilize sensory and motor cues given from the materials, and process feedback from the motor actions while completing the various stitches (Allen et al., 2007). The tool allows occupational therapists to measure the client's "...global cognitive processing capacities, learning potential, and performance abilities and to detect unrecognized or suspected problems related to functional cognition" (Allen et al., 2007, p.1). The levels range from zero to six, with six being the highest level of function and zero being the lowest (Cole & Tufano, 2008). The screening tool typically assesses adults with either psychiatric disorder or dementia (Allen et al., 2007). Researchers tested the construct validity of the Large ACLS-5 with a group of people with dementia who had MCI and mild dementia living in the community (Wesson et al., 2017). Researchers found that the evidence supports the tool's construct validity (Wesson et al., 2017). Therefore, this tool is appropriate to assess the cognitive abilities of individuals with AD. ACLS. The ACLS was used to assess the cognitive abilities of twelve individuals with dementia. COGNITIVE SOCIAL GROUPS Hess 9 Interest Checklist One way to ensure that activities that are meaningful for a client are being chosen is using the Interest Checklist (Klyzec et al., 1997). Informal caregivers of the guests received a paper copy of an extensive interest checklist to fill out to supplement the brief one completed before my arrival. The interest checklist sent home with caregivers contained 34 different activities. The interest checklist that the adult day center completed with guests and their caregivers contained 14 activities. Staff Training Bourgeois et al. (2015) found that when workers received training on how to encourage activity participation, individuals with dementia reported better quality of life. Staff participated in several educational opportunities to learn the implications of cognition and how to facilitate group activities. Before implementing the activity binder and assessment of the guests, I provided the staff members with a brief overview of ACLs and their implications and printed materials outlining the various cognitive levels. After assessing the guests, I provided the staff members with a brief PowerPoint presentation outlining the cognitive levels and where each guest fell according to the levels. Additionally, I provided general recommendations related to appropriate activities, the assistance level needed to complete activities, and communication strategies. During the first week of implementing the activity binder, the staff members observed me facilitate the activities. During the second week of implementation, the staff members chose an activity out of the binder to facilitate. I was present to provide immediate feedback and answer any questions during these sessions. During the third week of implementation, the day center staff members facilitated the activity while I provided no immediate feedback and instead performed a written performance review. The performance review's purpose was to provide staff COGNITIVE SOCIAL GROUPS Hess 10 with areas of strength and growth areas regarding their facilitation skills. Each staff member was given at least three written performance reviews. These performance reviews were given to staff following completion of the activity they facilitated. During the fourth week of implementation, only one staff member was observed due to staff turnover. The staff member facilitated a session while I observed and collected guest engagement data. Informal Caregiver Resources Researchers have found a direct link between caregiver stress and lack of confidence (DiZazzo-Miller et al., 2020). Caregiver stress improves when caregivers are offered educational opportunities to understand how to assist individuals with dementia with activities such as ADLs (DiZazzo-Miller et al., 2020). Several educational opportunities were created to provide informal caregivers with information regarding the implications of cognition. The first was the creation of articles regarding home safety, failure-free activities, and communication techniques. The second was an educational handout describing each of the ACLs and specific implications for each level. The third was a virtual presentation during which I explained the purpose of the ACLs, the specifics of the activity program that was designed for the guests at the day center, as well as how to engage with their loved ones in different activities at home. Activity Binder The ability to participate in valued occupations diminishes as dementia and AD progress (Smith & D'Amico, 2020). To allow for increased participation in the occupations of leisure and social participation, I created an activity binder to assist staff in leading appropriate group activities with guests with dementia. While creating the activity binder, I considered interests and the guests' varying cognitive abilities and utilized Montessori principles to create an activity binder. By using the Montessori Method, "...meaningful, inclusive, failure-free activities to COGNITIVE SOCIAL GROUPS Hess 11 enhance quality of life" are created (Jassen et al., 2020, p.1). There are several benefits to using the Montessori Method. Ducak et al., (2018) explain that Montessori principles decrease negative behaviors in individuals with dementia. Montessori programs are typically multisensory, and the program focuses on the individual's abilities rather than the deficits (Camp et al., 2017). Activities that are appropriate for a Montessori based approach include arts and crafts, music, simple games, sensory stimulation activities, dance, yoga, gardening, mealtime, social groups, and reading groups (Chan et al., 2021; DeVries et al., 2019; Smith & DAmico, 2020) Activities included in the binder for this specific adult day center reflect the findings of these researchers. Outcome Measurements Guest Engagement Dabelko-Schoeny and King (2010) explain that engagement and participation in activities improve the well-being of individuals who have dementia. According to researchers, the positive forms of engagement in individuals with dementia are elicited when Montessori-based activities are implemented (Judge et al., 2000). Engagement levels of guests at the day center were measured using the Group Observational Measurement of Engagement (GOME). Observational outcomes measured with this tool include engagement, mood, and sleep (CohenMansfield, 2018). Engagement is constructed by three variables: engagement, active participation, and attitude towards the activity (Cohen-Mansfield, 2018). Cohen-Mansfield et al. (2017) found that the GOME had good inter-rater reliability and validity when used to measure group engagement in individuals with dementia. I completed this tool after staff observed me facilitate activities. The staff had three weeks of practice facilitating activities. The staff had COGNITIVE SOCIAL GROUPS Hess 12 received feedback regarding their ability to facilitate activities and after staff had received all educational materials. Staff Confidence and Knowledge Researchers have found that providing educational opportunities regarding dementia management to formal caregivers has a positive impact on knowledge, attitudes, and confidence (A. Scerri & C. Scerri, 2019). To measure staff confidence and knowledge related to working with guests with dementia, staff completed a pre-and-post survey. The staff was asked to rate six items related to perceived knowledge and confidence using a five-point Likert scale. Staff Satisfaction Staff satisfaction with educational opportunities and the activity binder was assessed using a survey. The survey consisted of ten satisfaction-related questions, rated using a five-point Likert scale and two open-ended questions related to specific likes and dislikes of all materials provided. The survey was given to staff after attending the initial presentation of ACLS scores, implementing activities in the activity binder, and viewing a training video regarding how to lead group sessions with guests with dementia. Results Staff Confidence and Knowledge Staff participated in training sessions I led. Training consisted of educational materials describing the ACLs and their implications, general recommendations related to appropriate activities and level of assistance, and communication strategies. Additionally, staff observed me facilitate activities for one week. After completing this training, the staff then facilitated activities while I observed. While observing the staff during the first week, I first offered immediate feedback during the activity session. During the second week, the I completed a COGNITIVE SOCIAL GROUPS Hess 13 written performance review based on observations made during the facilitation of the activities outlined in the activity binder. Unfortunately, due to staff turnover, only one staff member could complete all the training and receive a written performance review. The main areas of growth noted in the performance reviews included music during activities, moving around the room to actively engage with each guest, modeling movements for guests to copy, and having guests take turns answering questions, voicing opinions, or reading. The main areas of strength noted in the performance reviews were introducing the activity, having a positive attitude towards every group member, appropriately re-directing guests, and encouraging guests to participate in some capacity. To measure staff confidence and knowledge before and after receiving training and verbal and written feedback, staff completed a pre-and-post survey consisting of six questions to be rated using a five-point Likert scale. The staff member that completed the training and received feedback total score on the survey improved from 25 points to 30 points. Staff Satisfaction I created an activity binder and educational resources for staff use at the site. The activities included in the binder reflect the interests and cognitive levels of the guests at the day center. The educational resources provided by me included handouts outlining cognition, cueing and communication strategies, and tips for facilitating craft activities and reading activities. Additionally, I provided the staff member with a training presentation regarding the activities' facilitation. To measure staff satisfaction, the staff member completed a survey. The survey consisted of ten satisfaction-related questions rated using a five-point Likert scale and two openended questions related to specific likes and dislikes of all materials provided. The staff member scored each item as a 5, very satisfied. Regarding what the staff member enjoyed about the COGNITIVE SOCIAL GROUPS Hess 14 activity binder and educational materials, the staff member indicated, I liked how organized the binder was and I feel comfortable working with people with dementia after learning everything you taught me. Regarding what the staff member would like to change about the activity binder and educational materials, they stated, I wish I had more opportunities to watch you facilitate sessions and I wish I had more opportunities to receive feedback from you about how I am doing. Guest Engagement I observed the staff member facilitate three different group activities with guests at the day center who had dementia; the guests in the groups scored between 2 and 3 on the ACLS. Due to staffing issues, I was not able to observe more activity sessions. The average group size was between four and eight guests. A total of tweleve guests participated in the activities. The activities that the staff member led included an exercise activity, a virtual field trip, and a craft. The activity sessions lasted between 15 and 30 minutes. A staff member facilitated each session in a low-stimulation environment. While observing the staff member facilitate activity sessions, I completed the GOME for each guest who attended the activity session. Table 1 reports the results of the GOME. COGNITIVE SOCIAL GROUPS Hess 15 Table 1 Comparison of mean engagement, participation, attitude, positive mood, and sleep during various group activities. Variable Exercise Virtual Field Trip Craft Mean Mean SD Mean SD 2.875 1.96 4.00 1.67 3.25 0.92 Active Participation 1.75 1.38 3.167 1.33 2.75 0.5 Attitude 4.5 1.19 5.167 1.17 5.75 0.5 Positive Mood 2.375 1.60 2.667 0.81 4.00 0 Asleep 0.625 1.41 0.5 1.22 0 0 Engagement SD Note. SD = standard deviation. Discussion Researchers have shown that individuals with dementia benefit from being able to participate in a variety of engaging, relevant, and meaningful activities that provide cognitive stimulation and promote socialization (Smallfield & Heckenlaible, 2017; Tak et al., 2014). This project aimed to address the occupational engagement of guests with dementia during group activities with dementia at an adult day center using a cognitive-based approach to activity design. Additionally, researchers have also explained that education explicitly related to dementia care for formal caregivers has significant benefits in staff knowledge and confidence, and the effects of training on job satisfaction for formal caregivers is promising (A. Scerri & C. COGNITIVE SOCIAL GROUPS Hess 16 Scerri, 2020; Vernooij-Dassen et al., 2009). The secondary aim of this project addressed staff confidence and knowledge as it relates to interacting with individuals with dementia and staff satisfaction with resources and educational materials provided to assist staff in facilitating group activities. Staff Confidence and Knowledge Continuous exposure to education regarding dementia and caregiving can benefit formal caregivers (A. Scerri & C. Scerri, 2019). In the present study, the staff member at the adult day center received multiple educational opportunities to learn how to facilitate group activities with individuals who have dementia, including a training presentation and multiple performance reviews. The staff member demonstrated an increase of five points on the post-survey given to measure staff confidence and knowledge. Employees who report higher levels of dementia knowledge are more likely to use evidence-based guidelines and external knowledge (Scerri et al., 2020). When observing the staff member facilitating group activities, then I noted that the staff member incorporated much of the information covered in the educational materials provided. Past researchers concluded there is a correlation between perceived staff attitude and better care practices (Scerri et al., 2020). When observing the staff member, I noted that the individual had a positive attitude, and the staff member could get all participants in the group activity to participate in some fashion. The staff member demonstrated a good ability to use various methods, depending on the guest, to get them to be more involved in the activity. According to researchers, training for formal caregivers should include educational materials on intellectual and interpersonal skills (Scerri et al., 2020). The training provided to the staff member addressed both areas. Based on both the performance reviews and the staff confidence and knowledge survey, the staff member demonstrated good intellectual and interpersonal skills. COGNITIVE SOCIAL GROUPS Hess 17 Staff Satisfaction Researchers argue that a correlation exists between the turnover rate of formal caregivers and job satisfaction (Coogle et al., 2006). Additionally, job satisfaction is positively related to improved quality of care and patient outcomes, such as improved quality of life (Coogle et al., 2006; Rajamohan et al., 2019). In the present study, the staff member reported a high level of satisfaction with the activity binder and the educational materials that I created. I created these materials to offer staff members support to facilitate meaningful activities with individuals who have dementia. According to researchers, factors such as a friendly environment and organizational support correlate to higher levels of job satisfaction among staff members working with older adults (Huang et al., 2020). I created a friendly and supportive environment for the staff member using educational opportunities and made changes to the activity binder and educational materials based on feedback from the staff member. By offering staff members at the adult day center multiple opportunities to receive education regarding cognition and its implications as well as education on how to properly facilitate group activities among individuals with dementia, I could offer the staff member support they needed to successfully engage with the individuals with dementia. Guest Engagement In the present study, guests had high scores on the GOME when participating in activities in the binder. Specifically, guests demonstrated higher scores on the GOME when participating in craft activities. When completing the interest checklist, all the guests and their caregivers reported interest in crafts, coloring, and art-based activities. Only four guests reported interest in exercise activities, and six guests reported interest in reading activities. However, guests still COGNITIVE SOCIAL GROUPS Hess 18 demonstrated high scores on GOME, particularly in attitude and positive mood during all activities. Ducak et al. (2018) highlight the importance of meaningful activities that are tailored to the needs and abilities of individuals with dementia. The researchers argue that activities such as the ones I created, help increase participation in meaningful activities and increase enjoyment in everyday life (Ducak et al., 2018). The findings of the present study highlight the importance of social connection and engagement in meaningful activities. Occupational therapists are well-suited to address health promotion and modification related to caring for individuals with dementia (AOTA, 2017a). When creating the activity binder, I focused on promoting the strengths of the guest so that staff could promote maximal engagement in preferred activities for individuals with dementia. Additionally, the educational materials I created addressed environmental modifications. These educational materials promoted maximum participation in preferred social and leisure activities. According to Eastham and Cox (2016), suitable environments to facilitate activities promote increased activity engagement, which increases health and well-being for individuals with dementia. By creating activities that focused on the strengths and abilities of the guests at the day center and making environmental changes at the day center, I impacted the engagement of individuals with dementia. Previous researchers explain that when individuals with dementia participate in higher levels of activities, these individuals reported better health status and functional abilities, as well as higher reports of engaging with friends and family (Fernadez-Matoralas et al., 2015). Additionally, researchers have shown that planned activities are beneficial to the health and wellbeing of older adults with dementia (Brooker & Duce, 2000). COGNITIVE SOCIAL GROUPS Hess 19 Limitations A few limitations exist for this study. The first limitation is related to staff turnover at the adult day center the study took place. At the start of the study, three staff members planned to participate in the study. However, only one staff member remained at the site during the time of data collection. Due to staff turnover, the sample size of the study was small. It is recommended that in future research, more staff members complete training on how to facilitate group activities with individuals with dementia in order to achieve a larger sample size. Another limitation of this study is related to the number of activities I observed while completing the GOME. Again, due to staffing issues, I was only able to observe three activity sessions. Implications for Future Practice The present research study found that utilizing a cognitive-based approach to activity design allowed older adults with dementia at a day center to engage in appropriate and meaningful group activities. Occupational therapists play a valuable role in providing care to individuals with dementia in a variety of settings, including adult day centers. This research adds to the growing body of literature that supports the benefits of tailoring activities to best meet the needs, interests, and abilities of older adults with dementia. I recommend further exploration of activity engagement using the GOME, using a wider variety of activities and at a larger scale. OT practitioners need to be aware of the benefits of tailoring our care to best suit the needs, interests, and abilities of older adults with dementia to positively impact their health and wellbeing. COGNITIVE SOCIAL GROUPS Hess 20 References Allen, C. K., Austin, S.L., David, S. K., Earhart, C. A., McCraith, D. B, & Riska-Williams, L. (2007). Manual for the Allen cognitive level screen-5 (ACLS-5) and Large Allen cognitive level screen-5 (LACLS-5). Camarillo, CA: ACLS and LACLS Committee. Alzheimers Association. (2019). 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... Building the Screen of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS): A Delphi Study Taylor Henson, Jordan Romero, Kenzie Salzbrenner, Daria Seccurro, Shanele Tyler, and Michael Wroblewski December 2, 2021 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: Dr. Katie M. Polo, DHS, OTR, CLT-LANA Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 1 of 61 A Research Project Entitled Building the Screen of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS): A Delphi Study 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: Taylor Henson, Jordan Romero, Kenzie Salzbrenner, Daria Seccurro, Shanele Tyler, and Michael Wroblewski Doctor of Occupational Therapy Students Approved by: 2021-12-15 Research Advisor Date Accepted on this date by the Chair of the School of Occupational Therapy: 2021-12-15 Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Date Page 2 of 61 TABLE OF CONTENTS Page ACKNOWLEDGEMENTS 3 CONTRIBUTORS 4 PLAN FOR DISSEMINATION 4 LITERATURE REVIEW 5 ABSTRACT 29 RESEARCH PAPER 31 CHAPTER I. INTRODUCTION 31 II. METHOD 32 III. RESULTS 37 IV. DISCUSSION 41 V. CONCLUSION 45 APPENDIX A 58 APPENDIX B 59 APPENDIX C 60 APPENDIX D 61 Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 3 of 61 Acknowledgements Beth Ann Walker, Cancer survivor panelists from Round 1 of Delphi study Contributors Student Contributors: Cassidy Stinson, Moriam Olorunoje, Kayla Mitchell, Tara Nastoff, Isabel Mazanowski & Ally Delks Expert Panelists: Kathleen Lyons, Sheila Longpr, Francie Baxter, Naomi Anderson, Heidi Spyridakis, Jennifer Hayter, Donna Kelly, Molly Sleigh, Karen Smith, Asfia Mohammed, Alix Sleight, Megan Turner, Lauro Antioco Munoz, Leslyn Keith, Jennifer Wahowski, Theresa Smith, Jennifer Cook, Rose Duffy, Ann Marie Potter, Nicole Scheuman, Karen A Enlow, Jennie Marti Plan for Dissemination Our research team has been accepted to present this information at the AOTA Inspire conference in San Antonio, Texas in April of 2022. Our team also plans to disseminate this information at the Scholars Showcase in April of 2022 for those members who were unable to attend the conference. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 4 of 61 Literature Review As of 2016, researchers estimated that there were 15.5 million cancer survivors in the United States and that by the year 2026, that number will rise to 20.3 million (National Cancer Institute, 2018). Researchers define a cancer survivor as anyone with or who had cancer from diagnosis to the end of life (National Cancer Institute, 2019). As the number of cancer survivors increases, it is essential to consider what factors may impact their quality of life following cancer treatment. Researchers indicated that quality of life was inversely related to occupational performance deficits, which can occur due to side effects of cancer treatment such as fatigue, pain, sensory loss, and cognitive impairments (Brekke et al., 2019). Occupational performance is the accomplishment of an occupation, a purposeful activity that has meaning to the individual (American Occupational Therapy Association, 2014). In 2006, the Institute of Medicine (IOM) called for the implementation of cancer survivorship recommendations to improve care coordination, facilitate follow-up care, and assure patient outcomes (Stricker et al., 2011). The American Society of Clinical Oncology (ASCO) Survivorship Care Plan (SCP) is a document that includes a treatment summary and follow-up care plan to improve communication and coordination of care for cancer survivors. The ASCO SCP assists patients in tracking check-up appointments, reviewing follow-up tests, mapping out possible late side effects of treatment, and providing ideas for staying healthy (Centers for Disease Control and Prevention, 2018). The ASCO SCP addresses concerns related to emotional and mental health, physical functioning, memory or concentration loss, fatigue, parenting, school/work, and sexual functioning. However, the SCP in care coordination does not include various life activities (occupations) that researchers found cancer survivorship impacts (American Society of Clinical Oncology, 2019). Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 5 of 61 Despite the implementation of the ASCO SCP, researchers have indicated that a lack of coordination in survivorship care can contribute to poor care delivery and adverse patient outcomes (Klabunde et al., 2013). Researchers have recommended an occupational participation approach to address gaps in cancer survivorship care (Yim Loh & Jonsson, 2016). Although survivors face performance deficits resulting from cancer treatment, there is a lack of referral to occupational therapy services. Survivorship care requires an occupational participation approach which includes regular screening for occupational therapy services. Currently, no validated screening tools indicate the need for referral to occupational therapy in survivorship care. However, the Screening of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS) tool is available but requires a true consensus from experts in the field to indicate which items researchers should include in its final rendition. The purpose of this study was to formally validate The Screening of Cancer Survivorship-Occupational Therapy Services (SOCS-OTS), which researchers developed for oncology team members to identify those that need occupational therapy services due to occupational performance limitations in survivorship care. Side Effects of Cancer Treatment Although there is currently no developed screening tool indicating the need for referral to occupational therapy in survivorship care, there are many side effects of cancer treatment that may impact survivors occupational performance. Larkey et al. (2015) performed a quantitative randomized control trial for breast cancer survivors with cancer-related fatigue (CRF). Researchers selected 87 female breast cancer survivors for this study, of which 49 participated in the tai-chi intervention group. Researchers then administered the exercises for a total of 24 weeks for 90-minute supervised periods twice a week for 12 weeks, followed by 30-minute unsupervised periods five times a week for an additional 12 weeks. Researchers utilized the Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 6 of 61 Fatigue Symptom Inventory (FSI), in which participants rated fatigue on a scale of zero to ten, with a three or higher score considered a meaningful level of fatigue. The intervention group showed a moderate decrease in CRF after the supervised activities. The scores during the individual intervention were consistent with those reported at the end of the supervised portion of the intervention, suggesting a lasting effect for decreased CRF due to tai-chi exercise in cancer survivors (Larkey et al., 2015). Johansson et al. (2013) similarly performed a quantitative, randomized control trial that utilized water-based intervention measuring shoulder range of motion for breast cancer survivors with chronic lymphedema. Researchers recruited 29 female survivors for participation in the study, with 15 participating in the intervention group and 14 participating in the control group. The intervention group completed water-based exercise three times a week for eight weeks. The participants either swam or performed specific shoulder exercises shown to them by an instructor during the allotted time. The control group received no intervention treatment. Median changes for flexion and external rotation were significantly larger in the intervention group. Flexion median change increased by seven degrees, and external rotation median change increased by thirteen degrees. Researchers did not observe significant increases in the control group (Johansson et al., 2013). Salerno et al. (2019) performed a randomized crossover trial study to measure the effects of cancer-related cognitive impairment (CRCI) in breast cancer survivors after aerobic exercise training. Researchers recruited 29 participants for this study and conducted three sessions. The first session consisted of determining the max heart rate of participants. In the second session, participants completed a cognitive battery test followed by either 30 minutes of exercise on a treadmill or 30 minutes of sitting. They then completed a second cognitive battery test following Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 7 of 61 the intervention. Out of the recruited participants, 15 performed walking during the second session, while 14 performed sitting during the second session. Researchers reversed the groups for the third and final session. Participants showed a significant improvement in spatial working memory and processing speed upon the conclusion of the exercise intervention (Salerno et al., 2019). Similarly, Baumann et al. (2011) used physical activity to explore the effects of CRCI in breast cancer survivors. Researchers found significant improvements in intelligence and memory in the exercise intervention group (Baumann et al., 2011). Kneis et al. (2019) incorporated balance and endurance training in a quantitative randomized control designed to study the effect on neuropathic symptoms. The intervention group performed both balance and endurance training, while the control group performed only endurance training. Researchers selected 50 cancer survivors, with 25 participating in one-onone interventions lasting 60 minutes in length. Participants completed endurance training for 30 minutes on a stationary bicycle and 30 minutes for balance training. The control group included 25 survivors. Modules in the European Organization for Research and Treatment of Cancer Quality of Life (EORTC QLQ-C30) measured chemotherapy-induced peripheral neuropathy (CIPN) severity in sensory, motor, autonomic, and upper and lower extremity categories. Upon conclusion of the study, the intervention group had significantly better scores in the EORTC QLQ-C30 in all categories measured for CIPN purposes, indicating a significant reduction in reporting the symptoms of CIPN reported (Kneis et al., 2019). These common side effects of cancer treatment, including CIPN, CRF, CRCI, and lymphedema, can impact the occupational performance of cancer survivors. Jung et al. (2017) used the Brief Fatigue Inventory (BFI) to measure the severity of fatigue, the Hospital Anxiety and Depression Scale (HADS) to measure levels of anxiety and Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 8 of 61 depression, and the EORTC QLQ-C30 to target the patients emotional, cognitive, social and role functionalities of lung cancer survivors. Researchers reported that approximately 332 individuals of their initial outreach of 830 survivors agreed to complete the questionnaires (Jung et al., 2017). Researchers utilized a univariate analysis of sociodemographic factors to record the impacts on fatigue and anxiety, such as comorbidities, age, and educational level. The researchers concluded that fatigue and depression had the most significant effect on lung cancer survivors (Jung et al., 2017). Fitch et al. (2020) surveyed a total of 13,258 Canadian respondents in a transitional study asking about unmet needs and experiences between the first and third year post-cancer treatment. The researchers survey contained open and closed-ended questions focused on the participants' health, medical history with cancer, follow-up cancer care, and additional topics. Following the survey, researchers initiated interviews to gain information on the understandability and meaningfulness of the survivorship experience (Fitch et al., 2020). Roughly 87% of the respondents experienced at least one physical symptom post-treatment, and 58% indicated three or more. Of the participants, 33% were under the impression that their symptoms were expected with no solution, which led to not seeking additional help (Fitch et al., 2020). Those that expressed physical concerns noted the following: sexual function/activity (45%), hormonal/menopause or fertility (37%), and fatigue/tiredness (33%). Gastrointestinal problems (63%) and pain (61%) were the symptoms for which respondents most frequently sought help. However, more than onethird of respondents who sought help indicated that it was difficult to obtain for most of their symptoms. Seeking help for changes in concentration and memory was particularly challenging (48% experienced difficulty) (Fitch et al., 2019, p. 2980) Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 9 of 61 Krok-Schoen et al. (2018) utilized a survey design to explore the influences that inhibited fear of cancer recurrence (FCR) among older female cancer survivors. A total of 4,259 participants with different types of cancer completed an online-based survey that recorded cancer type and treatment data (Krok-Schoen et al., 2018). Researchers measured participants' FCR using an eight-item Cancer Worry Scale (CWS). Participants reported general psychological well-being, physical symptoms, and quality of life. Researchers found that nearly 16% of the participants reported a high FCR based on factors like chemotherapy, high symptom scores, and older age (Krok-Schoen et al., 2018). Similarly, Galica et al. (2021) found that as the number of cancer survivors continues to increase, FCR is the most significant factor limiting this population. FCR is associated with an overall decrease in quality of life, increased anxiety, and higher rates of depression (Galica et al., 2021). The researchers indicate that previous findings show cancer survivors want help to cope with their FCR; however, this concept is still under-recognized, and the needs remain unmet (Galica et al., 2021). The researchers found that survivors within this population are experiencing unmet and unrecognized needs, warranting oncology nurses to assess, care for, and provide intervention for these increasing numbers of patients (Galica et al., 2021). Impact on Occupational Performance Side effects of cancer treatment impact every category of occupation, including ADLs (Activities of Daily Living), IADLs (Instrumental Activities of Daily Living), rest and sleep, work, leisure, and social participation (American Occupational Therapy Association, 2014). First, experts define ADLs as activities directed at taking care of one's own body, such as sexual activity, toileting and toilet hygiene, feeding, functional mobility, and personal hygiene and grooming (American Occupational Therapy Association, 2014). Hwang and colleagues (2015) Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 10 of 61 investigated cancer survivors functional deficits and their impact on quality of life. The researchers conducted a one-group, nonrandomized study. They had 68 cancer survivors respond to the Post Cancer Outcome Survey (PCOS) and Cantril's Self-Anchoring Striving Scale to measure perceived functional deficits and quality of life. On the PCOS, cancer survivors frequently reported that sexual activity was an occupation in which they experienced difficulty due to a lack of sexual enjoyment from decreased sexual drive, negative body image, and discomfort during sex following cancer treatment. Researchers found that the occupational performance limitations survivors faced were associated with reduced quality of life (Hwang et al., 2015). Cancer survivors also listed toileting and toilet hygiene as an occupational performance deficit in research conducted by Marciniak et al. (1996). Researchers identified functional impairments resulting from cancer and its treatment among 159 cancer survivors using the Functional Independence Measure (FIM) in a non-experimental, retrospective study at the Rehabilitation Institute of Chicago. Cancer survivors indicated that they experienced gastrointestinal problems such as constipation, diarrhea, and incontinence following treatment which impacted their toileting occupations (Marciniak et al., 1996). Lastly, cancer survivors reported that another area of occupational performance deficit was functional mobility. Lyons and colleagues (2018) used a mixed-methods sequential explanatory approach to identify and reduce disability among cancer survivors. Participants in the study were 65 years and older and were cancer survivors who were experiencing disability due to cancer treatment. Researchers used the Health Through Activity Program intervention, which required participants to reflect on pleasurable and beneficial activities to their physical and mental health, create goals to engage in said activities, and then reflect on their experience and Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 11 of 61 success with those weekly activities with an occupational therapist. During the completion of the intervention, survivors reported that functional mobility, such as walking, was an area of performance deficit due to side effects such as sensory loss, pain, and edema (Lyons et al., 2018). These findings indicate that survivors face occupational performance deficits in the occupational category of ADLs due to the side effects of cancer treatment. ADLs are impacted by the effects of intensive cancer treatment, but IADLs are also negatively influenced. IADLs are activities that benefit daily living throughout the community and home and involve more complex interactions such as child-rearing, home establishment and management, health management and maintenance, and driving and community mobility (American Occupational Therapy Association, 2014). Hwang et al. (2015) and Lyons et al. (2018) found that side effects negatively influence ADLs. Researchers also discovered performance issues in health management and maintenance, an IADL. Cancer survivors indicated difficulties exercising/working out due to treatment effects such as fatigue, decreased energy levels, nausea, and pain (Hwang et al., 2015; Lyons et al., 2018). Another IADL that drastically changes for survivors following cancer treatment is home establishment and management. In a cross-sectional, descriptive survey study with 368 participants in Iran and Canada, researchers found that survivors reported limitations in home establishment and management (Shahidi et al., 2014). Survivors reported that constraints were present in their abilities to complete house chores such as laundry and cleaning following treatment due to muscle weakness, fatigue, and sensory loss (Shahidi et al., 2014). Not only have performance deficits in ADLs and IADLs been found in cancer survivors due to the side effects of treatment, but researchers discovered that the occupation of rest and sleep also suffers. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 12 of 61 Individuals reported rest and sleep activities restore engagement in other occupations (American Occupational Therapy Association, 2014). Researchers found that survivors' side effects hinder sleep participation during or after cancer treatment. Engstrom et al. (1999) used a qualitative, multi-institutional sleep study to explore the impact, type, frequency, and severity of sleep disturbances among 150 cancer survivors. Participants completed interviews and phone surveys using an 82-item sleep questionnaire to obtain data regarding cancer survivors' sleep participation following cancer treatment. Survivors reported that sleep participation was disturbed by side effects such as insomnia, sleeping at unusual times, having trouble with dreams or nightmares, and psychological distress following cancer treatment (Engstrom et al., 1999). Carpenter et al. (2004) further explored sleep participation limitations among cancer survivors in a cross-sectional, descriptive, comparative pilot study using questionnaires and monitoring sessions to compare differences in sleep quality and disturbance between cancer survivors and healthy women who have hot flashes. Researchers discovered that cancer survivors experience poor sleep quality and high levels of sleep disturbance (Carpenter et al., 2004). As sleep participation limitations can lead to symptoms such as fatigue, poor cognition, and depression, which can impact other areas of occupation, it is essential to consider how sleep participation can be affected by the side effects of cancer treatment (Durmer & Dinges, 2005). The occupation of work includes labor, construction, organizing and planning services or processes, and committed occupations which may consist of financial reward (American Occupational Therapy Association, 2014). Many cancer survivors reported that the side effects of cancer treatment negate job performance. Groeneveld de Boer and Frings-Dresen (2013) used interviews in a qualitative, phenomenological study to evaluate how cancer treatment had impacted 10 participants work participation. Researchers explored survivors experiences with Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 13 of 61 returning to work and work performance, a physical exercise intervention, and the link between physical exercise and work. Survivors reported that their job performance and work productivity had declined following treatment due to side effects such as fatigue, feeling sick, cognitive deficits, impairments in concentration, memory deficits, and increased stress levels. Survivors also explained that absenteeism increased following treatment due to feeling ill, overly tired, or unmotivated to go to work (Groeneveld et al., 2013). Fangel and colleagues (2013) further explored cancer survivorship's influence on job performance in a descriptive, exploratory, crosssectional, and qualitative study using Katz's index and Lawton's index to assess functional capability and its correlation with the quality of life among 42 cancer survivors. Participants reported difficulties with work performance due to decreased independence, limited functional capability, and the presence of psychosocial issues following cancer treatment (Fangel et al., 2013). Leisure participation is another area of occupation hindered by the presence of cancer treatment side effects. Experts define leisure activity as an activity that is not an obligation but is intrinsically motivated and completed during a discretionary time (American Occupational Therapy Association, 2014). Keesing et al. (2018) conducted a mixed-methods Delphi study to explore the possible role of occupational therapists in the care of female cancer survivors. The researchers found survivors faced many challenges engaging in and resuming meaningful leisure occupations following treatment because of functional, emotional, and psychosocial side effects. Further, researchers supported the idea that occupational therapists could play a significant role in helping survivors address these occupational performance limitations. Occupational performance limitations related to leisure participation can also occur among survivors due to arm morbidities, such as pain, limited range of motion, and lymphedema of the arm following Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 14 of 61 cancer treatment. These side effects are especially common among breast cancer survivors (Thomas-Maclean et al., 2008). In a longitudinal, qualitative cohort study conducted by Thomas et al. (2015), 40 cancer survivors reported in interviews that side effects including arm morbidity, physical discomfort, and psychological distress reduced their abilities to engage in leisure activities. Researchers have identified specific forms of leisure participation limitations in the literature that involve difficulties engaging in travel and active leisure participation (Thomas et al., 2015). The final occupation that cancer survivors have reported experiencing deficits in following cancer treatment is social participation. Social participation involves activities supporting social engagement and interdependence with community members, family, peers, and friends (American Occupational Therapy Association, 2014). Johnson et al. (2017) conducted a quality improvement study focusing on multidisciplinary management of distress that survivors face. Researchers also explored survivors satisfaction with the distress management they received. Data was collected from electronic health records using a convenience sample of 65 gynecologic cancer survivors. Using the National Comprehensive Cancer Network Distress Thermometer and Patient Related Outcome Measures Information Systems QOL, researchers found that survivors experienced great psychosocial distress following treatment that hindered their social participation. Side effects of treatment that negatively influenced survivors social support were anxiety, depression, emotional distress, and feelings of psychological isolation (Johnson et al., 2017). Not only does psychosocial distress negatively influence cancer survivors social activities and social function, but survivors have also reported that physical functioning has impacted their social participation. In a cohort study completed by Syrjala et al. (2010), researchers used the Social Activity Log (SAL) to explore the social activities of 100 cancer Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 15 of 61 survivors following hematopoietic stem cell transplantation. Researchers found that survivors face many physical challenges such as fatigue, incontinence, and increased functional dependence due to muscle weakness following treatment that negatively impact one's desire to engage in social participation (Syrjala et al., 2010). Hair loss is another common physical side effect following treatment that many cancer survivors state has negatively influenced their desire to engage in social participation. Survivors report being embarrassed and upset by hair loss, limiting their willingness to participate in social activities with family, friends, and peers (Petruseviciene, 2018). These occupational performance deficits impact the quality of life of cancer survivors; therefore, it is essential to utilize screening tools to evaluate the need for rehabilitation services such as occupational therapy. Current Survivorship Screening Tools While none currently screen for the specific need for occupational therapy, screening tools are available that screen for side effects of cancer treatment and the need for rehabilitation services. In an observational study, Henneghan et al. (2018) implemented the Patient-Reported Outcomes Measurement Information System (PROMIS) Item Bank, perceived stress scale (PSS), UCLA Loneliness scale, Pittsburgh sleep quality index (PSQI), and the functional assessment of cancer therapy-cognitive function instrument (FACT-Cog) to measure anxiety, depression, fatigue, stress, loneliness, and sleep quality on perceived cognitive function. There were ninety female breast cancer survivors three years post-chemotherapy treatment that participated in the study. The researchers reported that breast cancer survivors who felt high stress levels, social isolation, and poor sleep quality might also have a lower perceived cognitive function (Henneghan et al., 2018). Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 16 of 61 Boronowski et al. (2012) conducted a research study to determine the interrater reliability, intrarater reliability, predictive validity, and concurrent validity of the Occupational Therapy Discharge Needs Screen (OTDNS). Professionals use this screening tool to identify clients with more complex discharge needs (Boronowski et al., 2012). The hospital dischargeplanning process for complex needs often includes a home assessment conducted by an occupational therapist before being discharged. Pre-discharge home visits lead to quicker discharge times and play a role in fall prevention post-discharge. The researchers conducted a prospective study in a convenience sample of 89 participants in a community hospital's rehabilitation and transitional care unit that were about to be discharged. Categories on the OTDNS include functioning, disability, and contextual factors. Functioning and disability include items related to medical condition, mobility, and activities of daily living. Contextual factors included items related to social support, physical/environmental barriers, and perceived readiness for discharge (Boronowski et al., 2012). Researchers found that the OTDNS can contribute to the efficiency of the discharge-planning process (Boronowski et al., 2012). Many individuals affected by stroke(s) often have physical, cognitive, psychosocial, or behavioral challenges (Jaber et al., 2018). Identifying self-perceived challenges to daily participation helps occupational therapists create client-centered goals and support long-term community engagement after stroke. According to Jaber et al. (2018), strokes impact several different areas of occupation including activities of daily living, instrumental activities of daily living, work, leisure, and social participation. Researchers recruited 25 participants receiving occupational therapy services from the American Stroke Foundation and had met the inclusion criteria. Researchers implemented a demographic questionnaire, the Canadian Occupational Performance Measure (COPM), and the Montreal Cognitive Assessment (MOCA). Researchers Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 17 of 61 used the COPM to identify patients' self-perception of performance in everyday living, and the MOCA was used to identify mild cognitive impairments. Patients reported IADLs, leisure participation, and ADLs as the top three challenges on the COPM. Survivors frequently report that driving and community mobility are challenging IADLs. They also noted that employment seeking and functional mobility are challenging. The participants self-efficacy indicated that they were not yet satisfied with their occupational performance. (Jaber et al., 2018). Not only is there a lack of an occupational therapy screening tool available in survivorship care, but there are other gaps in survivorship care that impact the overall quality of life for survivors. Gaps in Survivorship Care Some gaps in survivorship care include lack of education of the healthcare provider, survivors' lack of knowledge about the SCP, lack of communication between the survivor and the healthcare provider, and poor care coordination. The gaps in care can lead to the needs of survivors being left unmet. First, healthcare providers lack education, which can make them feel unconfident in treating survivors' late side effects or managing their symptoms. Many providers do not understand what late side effects are and how survivors still experience deficits even after remission. Researchers identified these issues with both PCPs and nurses. Barton (2014) investigated oncologists and PCPs infrequently providing SCPs. Researchers used data from the Survey of Physician Attitudes Regarding the Care of Cancer Survivors, a 2009 national poll of 1,020 PCPs and 1,130 oncologists. The researchers looked at post-treatment follow-up care for patients surviving breast or colon cancer. Researchers used four outcome variables: how often oncologists supply survivors with a written SCP, how much oncologists discuss the SCP with patients and who will be providing care for them, PCPs discussion of recommendations, and how often oncologists supply the written SCP and discuss the plan with patients. The researchers Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 18 of 61 found that PCPs with less training in survivorship care were 43% less likely to have discussions with survivors. Only 12% of PCPs reported having full conversations of survivorship care with their patients. The author suggested a low percentage of PCPs having full discussions because of the lack of physician training and care coordination (Barton, 2014). Similarly, in 2014, Lester et al. studied nurses' knowledge of cancer survivorship care through a descriptive, cross-sectional study in a Midwestern comprehensive cancer center. This study included 223 registered and advanced practice nurses and used an online survey with 50 questions created from the Institute of Medicine report and related publications (Lester et al., 2014). The researchers found that less than 50% of the nurses felt knowledgeable about the impact cancer could have on survivors and their families, how to prevent certain conditions after cancer treatment, and the side effects survivors may face (Lester et al., 2014). The authors concluded that there are definite gaps in knowledge regarding cancer survivorship care with nurses (Lester et al., 2014). Cheung et al. (2013) conducted a quantitative cross-section study that surveyed PCPs and oncologists in 2013. The researchers looked at PCP and oncologists views on self-efficacy regarding the follow-up care of cancer survivors, such as their ability to detect recurrence and manage the effects of cancer and various treatments (Cheung et al., 2013). They designed survey questions to assess both the PCP and oncologists' views, knowledge, and care coordination methods regarding post-treatment care in cancer survivors (Cheung et al., 2013). The researchers also listed questions regarding PCPs' attitudes and preferences. In this study, participants identified their preferred survivorship care model regarding who has the most responsibility in the care plan. Their options in the final survey about who they preferred for the responsibility of care included PCPs having the primary responsibility, PCPs sharing the responsibility with other Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 19 of 61 cancer specialists, or oncologists having the primary responsibility. Researchers utilized the initial survey to determine which participants were eligible through a telephone screening process and followed up with a survey in the mail for the eligible participants. In this study, there were 2,026 total participants. Out of these participants, 938 were PCPs, and the other 1,088 were oncologists. The study found that 51% of PCPs supported a PCP/shared model of care, 59% of cancer specialists preferred an oncologists model of care, and 23% of physicians favored the specialized clinic models (Cheung et al., 2013). The study also found 70% of oncologists were confident in their ability to manage long-term effects in cancer survivors, while only 19% of PCPs felt confident in their ability to provide adequate care (Cheung et al., 2013). Overall, the authors concluded that PCPs and oncologists have different model preferences for cancer survivorship care. These preferences can affect communication and role delineation, affecting the survivors' care (Cheung et al., 2013). Another issue with the current SCP is that survivors do not have knowledge of what a SCP is, and they do not know how to understand the plan if they do have one. Casillas and colleagues (2011) explored how confident young adult cancer survivors are in managing their care. Researchers recruited 376 participants from the LIVESTRONG Survivorship Center of Excellence Network sites aged 18-39 years old. This self-report survey study looked at 57 items in six domains. The six domains included sociodemographic information, cancer diagnosis and treatment, experiences with doctors, survivors' knowledge of late side effects, current health status, and opinions regarding the availability of resources for survivors. Researchers found that one-third of participants did not have copies of their medical records, 48% did not have a written treatment summary, and 55% did not have a written survivorship care plan (Casillas et al., 2011). The researchers found that patients lack the knowledge they need when it comes to their medical Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 20 of 61 records and SCPs, which leads to them not being able to get the care they need. The authors of this study concluded that if survivors receive the SCPs, they will better manage their care and understand their past medical history. If provided with a SCP, survivors would likely better understand their past medical history and have more information on late side effects that they may experience, which could lead to improved communication with their healthcare providers. The final issue is the lack of communication between the healthcare provider and the survivor. Benci et al. (2018) conducted research to identify cancer survivors' barriers when sharing their SCP with their healthcare provider. The researchers in this quantitative study used data from 3231 cancer survivors who used the OncoLink SCP resource between the years 20092016. Researchers found that 87% of users rated their satisfaction with their SCP good or better; however, only 70% of survivors planned to share their SCP with their health care provider (HCP) due to the feeling that they would not care (Benci et al., 2018). The researchers found that some survivors are not communicating their SCP and their needs with their HCP because they feel that their needs will be ignored. The researchers in this study concluded that the primary goals of the SCP are to facilitate the transmission of information from the oncologist to survivor to the longterm care team and serve as a communication bridge between survivors and providers. However, there is an alarming disconnect with survivors feeling comfortable sharing their SCP with their healthcare provider (Benci et al., 2018). The lack of role delineation for treating the long-term effects of cancer in the cancer survivorship stage is another detriment that substantially impacts overall cancer care (Cheung et al., 2013). Some believe ongoing cancer survivorship care falls under the role of oncologists, who specialize in cancer, while others think primary care physicians (PCPs) should monitor this care (Greenfield et al., 2009). There are currently no guidelines stating what health care Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 21 of 61 professionals are in charge of cancer survivors; therefore, there are disparities because people do not have adequate follow-up care. Some oncologists feel monitoring and treating long-term effects resulting from cancer treatments is their role, while others believe they do not have time for this portion of cancer care and think it should be in the hands of primary care physicians (Klabunde et al., 2013). Similarly, some PCPs feel they should oversee follow-up cancer survivorship care, whereas others do not feel comfortable treating the adverse effects of cancer (Cheung et al., 2013). Cheung et al. (2013) conducted a quantitative cross-section study that surveyed primary care physicians (PCPs) and oncologists' views on self-efficacy regarding the follow-up care of cancer survivors. In this study, researchers also examined what cancer survivorship model PCPs and oncologists preferred to develop new strategies for follow-up cancer care. They designed survey questions to assess both the PCP and oncologists' views, knowledge, and care coordination methods regarding post-treatment care in cancer survivors (Cheung et al., 2013). The three possible survivorship model preferences were a shared model involving PCPs and oncologists together, care only by oncologists, or specialized survivor clinics that include physicians that exclusively focus on cancer care with skilled nurses, physician assistants, and nurse practitioners. Researchers examined participants' attitudes regarding their views on personal self-efficacy related to detecting cancer recurrence and the ability to manage cancer and its effects. The initial survey determined eligible participants through a telephone screening process, followed by a mailed version of the formal survey packet to eligible participants. In total, 2,026 participants consisted of 938 PCPs and 1,088 oncologists. The study found that 51% of PCPs supported a PCP/shared model of care, 59% of cancer specialists preferred an oncologist lead model of care, and 23% of physicians favored the specialized survivor clinic models Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 22 of 61 (Cheung et al., 2013). Researchers found that 70% of oncologists were confident in their ability to manage long-term effects in cancer survivors. However, PCPs were less optimistic in their ability to provide adequate care, with only 19% reporting high self-efficacy (Cheung et al., 2013). Researchers concluded that the discrepancy in preference of PCP or oncological care in treating cancer survivors might fail to coordinate care between providers adequately. A 2016 qualitative study, conducted by Smidt et al. (2016), focused on the perceptions of Australian oncologists in terms of cancer-related cognitive changes (CRCC) in patients and the impact of their views on patient care. The main questions researchers addressed in this study include how oncologists perceive CRCC and address these issues with their patients during the survivorship phase (Smidt et al., 2016). After receiving verbal consent, the researchers used telephone interviews, where interviews were audio-recorded and then transcribed verbatim. The interviews ranged from 15 to 30-minute intervals on average and consisted of 18 oncologists. The critical points asked in the interview were: (1) the beliefs about the impact of cognitive function among cancer survivors, (2) perceptions of which party is more likely to address cognitive changes, (3) uncertainty of how to manage CRCC, and (4) the role of oncologists in CRCC (Smidt et al., 2016). The researchers discovered that the participating oncologists treat cancer survivors that have side effects of cancer treatment. However, the patients indicated that they were given little information from their oncologists regarding CRCC. Researchers showed a minimal number of oncologists in this study referred patients to other healthcare professionals, including nurses, occupational therapists, and social workers (Smidt et al., 2016). They concluded that the lack of guidelines for cancer survivor treatment, and the number of survivors not experiencing the CRCC, has created a barrier in practice that has prevented survivors from the best care possible. This study successfully highlighted the barriers Australian oncologists Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 23 of 61 face when delivering survivorship care, which can impact the patient's care and overall quality of life (Smidt et al., 2016). Similarly, Klabunde et al. (2013) also investigated PCPs and oncologists' self-reported roles in follow-up care of cancer patients. Their focus was to assess the roles of PCP's and oncologists in the follow-up cancer care process. Researchers also determined what factors are involved in follow-up care and how clinicians utilize care coordination and communication (Klabunde et al., 2013). The researchers in this cohort study used data from the 2009 Survey of Physicians' Attitudes Regarding the Care of Cancer Survivors (SPARCCS), which surveys both PCPs and oncologists. The researchers primarily focused on the follow-up care of breast and colon cancer survivors; therefore, they excluded physicians who reported to never, or not in the past year, care for patients with these forms of cancers (Klabunde et al., 2013). The final study sample included 1,014 PCPs and 1,125 oncologists. Researchers assessed the physician's roles by asking how often treatment services were provided in their practice and evaluated the participants' beliefs on the role of PCPs in cancer survivorship (Klabunde et al., 2013). They specifically asked PCPs how often they received a summary of the patient's cancer treatment or recommendations for future care from the treating oncologists. Researchers found that many PCPs reported co-managing survivor care with other oncologists unless screening for new primary cancers in patients. The PCPs that reported receiving summaries from the treating oncologists were also more likely to prefer the co-managing role pattern (Klabunde et al., 2013). These researchers found that many PCPs feel that they have an active role in cancer survivorship but often accompany co-management of oncologists. However, oncologists reported they directly provide follow-up care without assistance from the PCPs. The authors noted the discrepancies of reports in co-management care from PCPs and oncologists and believe this emphasizes the need Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 24 of 61 for a shared-care model when treating cancer survivors to meet the patient's needs (Klabunde et al., 2013). Finally, a mixed-method study, conducted by Suija et al. (2016) focused on the current role general practitioners play in caring for cancer patients and the unmet needs that cancer patients in primary care face. Researchers conducted a study at general practice locations in Estonia that included patients with various stages of cancer but excluded patients with terminal diagnoses (Suija et al., 2016). Researchers (2016) used the qualitative portion to understand the current phenomenon through interviews, where patients expressed their personal experiences. Ten interviews lasted from 35 to 120 minutes and were recorded, transcribed verbatim, and analyzed using thematic analysis. A questionnaire was later developed as a form of quantitative research to collect data based on previous findings. The questionnaire focused on demographics, illness, treatment methods, follow-up care, and statements related to their diagnosis and their medical professional's role (Suija et al., 2016). There were 300 questionnaires distributed to eligible participants throughout Estonia, and 113 participants responded. The researchers found that 92% of survivor participants were satisfied with the GP's work, 77% felt their GP was competent in cancer care, and 79.5% reported their oncologists thoroughly investigated them (Suija et al., 2016). The most common unmet need reported by patients was poor communication, where 19.5% had negative attitudes toward communication with their physicians, and 30% stated they could not understand the doctor's explanations. Finally, 39.9% of participants reported that they felt their oncologists and general practitioners did not collaborate in shared survivorship care (Suija et al., 2016). Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 25 of 61 Unmet Needs of Survivors Due to gaps in care and a lack of referral to rehabilitation services such as occupational therapy, survivors live with unmet needs. Thorsen et al. (2011) published a cross-sectional study where researchers focused on assessing the rehabilitation needs of cancer survivors and exploring factors that are associated with these needs. The other aims of the study were to estimate the need for complex rehabilitation and its associated factors, address unmet needs in rehabilitation services, and assess the factors related to these needs (Thorsen et al., 2011). The researchers used a questionnaire to determine the patient's need for certain rehabilitation services relating to their type of cancer and what patients had been offered and utilized the rehabilitation services. The final number of participants was 1,325, where 37% reported no need for therapy, and 63% needed at least one form of rehabilitation that was listed (Thorsen et al., 2011). The highest reported need was physical therapy at 43%, followed by the need for more than one form of therapy at 40% (Thorsen et al., 2011). The authors concluded that most patients reported the need for some form of rehabilitation service, and physical therapy was the most indicated need. They believe the results from the study help to enforce that cancer patients need rehabilitation services in each phase of treatment, and that rehabilitation is often only offered after initial treatment (Thorsen et al., 2011). They also concluded that the need for rehabilitation remains present for the first few years after diagnosis and often remains relatively constant for years after (Thorsen et al., 2011). Binkley et al. (2012) conducted a mixed-methods study that focused on the unmet needs of breast cancer patients. The researchers hypothesized that the frequency of unmet needs could result from the lack of awareness of the potential long-term effects of cancer treatments. Researchers used a prospective surveillance model to explore various articles that included issues Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 26 of 61 regarding lymphedema, fatigue, upper extremity dysfunction, neuropathy, etc. (Binkley et al., 2012). The data was collected through systematic reviews, focus groups, and questionnaires to obtain the primary data sources (Binkley et al., 2012). The qualitative results suggest that patients need long-term attention, specifically shoulder and trunk strength and range of motion. The researchers also found few women are referred for rehabilitation services while receiving or after the conclusion of treatment for breast cancer (Binkley et al., 2012). They concluded that patients need consistent care, such as rehabilitation services, to treat short- and long-term effects of breast cancer (Binkley et al., 2012). Jang and Jeong (2021) performed a cross-sectional descriptive study focusing on the unmet needs of cancer patients and their families following diagnosis. Researchers hypothesized that these unmet needs would lead to a decreased quality of life in the patients (Jang & Jeong, 2021). The researchers utilized a questionnaire to collect patients' demographics, disease-related characteristics, unmet needs, and quality of life. Both cancer patients and family members completed the questionnaire, with 115 patient-family dyads participating in the study (Jang & Jeong, 2021). Researchers found that the patients unmet needs decreased their physical function and overall quality of life. Researchers also found that the patients unmet needs led to decreased mental quality of life in patients families (Jang & Jeong, 2021). The authors concluded that intervention programs are necessary to improve cancer patients' and their families quality of life (Jang & Jeong, 2021). In summary, researchers have indicated the need for an occupational therapy screening tool in cancer survivorship care. Survivors experience many side effects of treatment, such as fatigue, pain, sensory loss, and cognitive impairment that may impact occupational performance and overall quality of life (Brekke et al., 2019). These side effects can result in deficits in areas Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 27 of 61 of occupation such as personal hygiene and grooming, toileting, sleep, work, and sexual activity (Hwang et al., 2015; Marciniak et al., 1996; Petruseviciene et al., 2018). Although survivors face performance deficits resulting from cancer treatment, many do not receive referrals to occupational therapy. Occupational therapy practitioners are skilled in addressing these late side effects and occupational performance deficits for improved overall quality of life in cancer survivors. However, Pergolotti et al. (2014) found that only 32% of their total sample received referrals to occupational therapy within the first two years of their cancer diagnosis. Survivorship care requires an occupational participation approach which includes regular screening for occupational therapy services. Currently, no developed screening tools are indicating the need for referral to occupational therapy in survivorship care. Researchers previously developed the SOCS-OTS to screen for occupational performance deficits and the need for occupational therapy services in cancer survivors. The purpose of this study is to identify the level of consensus on which items should be included in this tool using a Delphi technique. Researchers will explore which items on the SOCS-OTS reach 80% consensus for inclusion, which do not reach a level of 80% consensus for exclusion, and additional items to include in the tool. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 28 of 61 Building the Screen of Cancer Survivorship - Occupational Therapy Services (SOCSOTS): A Delphi Study Abstract Background: Occupational therapy is needed in cancer survivorship care to bridge the gaps in care and treat the unaddressed life activities experienced by this population. The Screening of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS) tool is available but requires a true consensus from experts in the field to indicate which items to include in its final rendition. The researchers in this study aim to identify the level of consensus on which items should be included in the final rendition of the SOCS-OTS tool. The purpose of the tool is to survey cancer survivors to assess their need for occupational therapy. Introduction: This paper reviews the lack of occupational therapy services provided to cancer survivors post-treatment. The researchers of this study set out to create a screening tool that depicted the need for therapeutic interventions for these individuals. The Model of OccupationalParticipation for Cancer Survivorship (MOPCS) helped guide the development of this study and the screening tool. Methods: Researchers used a classical Delphi methodology to assess 14 expert opinions and indicate which items meet consensus for inclusion on the SOCS-OT tool through an online survey development software program. Researchers used thematic analysis and open, axial, and selective coding to interpret experts' comments and feedback and guide appropriate modifications to the survey before sending it out for subsequent rounds. Researchers removed items not reaching 80% consensus from the tool. In each round, participants received an overview of participants feedback from the previous round. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 29 of 61 Results: At the conclusion of the Delphi methodology process, 20 items met consensus for the final rendition of the SOCS-OT tool. Researchers modified several items throughout the process and removed three items from the tool. Conclusions: With the given information, the need for occupational therapy services in oncology is prevalent and requires additional research and assessment tools. The development of the SOCS-OTS provides a rise for further investigation. Recommendations/Implications: It is imperative that individuals in the field of oncology adopt and implement the SOCS-OTS into standard cancer survivor treatment. Researchers will utilize validity and reliability tests to confirm the tool's psychometric properties. Keywords: Cancer survivorship, Occupational Therapy, Screening Tool, Delphi Method Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 30 of 61 Introduction As of 2016, experts estimated that there were 15.5 million cancer survivors in the United States, and they predicted that by the year 2026, that number will rise to 20.3 million (National Cancer Institute, 2018). A cancer survivor is anyone with or who had cancer from the time of diagnosis to the end of life (National Cancer Institute, 2019). As the number of cancer survivors increases, it is essential to consider what factors may impact their quality of life following cancer treatment. Quality of life is inversely related to occupational performance deficits, which can occur due to side effects of cancer treatment such as fatigue, pain, sensory loss, and cognitive impairments (Brekke et al., 2019). Occupational performance is the accomplishment of an occupation which is a purposeful activity that has meaning to the individual (American Occupational Therapy Association, 2014). In 2006, the Institute of Medicine (IOM) called for the implementation of cancer survivorship recommendations and plans to improve care coordination and follow-up care and assure patient outcomes. The American Society of Clinical Oncology (ASCO) Survivorship Care Plan (SCP) is a document that includes a treatment summary and follow-up care plan to improve communication and coordination of care for cancer survivors. It helps patients track check-ups or follow-up tests, maps out possible late side effects of treatment, and provides ideas for staying healthy (Centers for Disease Control and Prevention, 2018). Researchers have indicated that a lack of coordination in survivorship care can contribute to poor care delivery and adverse patient outcomes (Klabunde et al., 2013). The ASCO SCP addresses concerns related to emotional and mental health, physical functioning, memory or concentration loss, fatigue, parenting, school/work, and sexual functioning. However, the SCP in care coordination does not include various kinds of life Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 31 of 61 activities (occupations) found which impact cancer survivorship in the literature (American Society of Clinical Oncology, 2019). Researchers have recommended an occupational participation approach to cancer survivorship care to address gaps in care (Yim Loh & Jonsson, 2016). Although survivors face performance deficits resulting from cancer treatment, many do not receive referrals to occupational therapy. An occupational participation approach is necessary in survivorship care, including regular screening for occupational therapy services. Currently, no developed screening tools indicate the need for referral to occupational therapy in survivorship care. However, a previously developed Screening of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS) tool is available but requires a true consensus from experts in the field to indicate which items are necessary in its final rendition. The researchers in the study aim to identify the level of consensus on which items should be included in the SOCS-OTS tool. Method Study Design Researchers used a classical Delphi methodology to assess expert opinion on a screening tool to indicate which items meet consensus for inclusion on the tool. The classical Delphi methodology is a consensus technique used to obtain and evaluate the views of an expert panel who have extensive knowledge and experience in oncology care (Sekayi & Kennedy, 2017). We used an expert panel for the ability to have multiple skillful opinions of how to adapt our screening tool to best address the concerns and problems of the cancer survivorship population. It also allows for knowledge sharing between the panelist and researchers. Lastly, it alters any researchers bias that may occur throughout the developmental process (Avella, 2016). Our study consisted of four rounds in which experts gave their opinions on whether to include an item in Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 32 of 61 our screening tool or not. Our study included a set of open-ended questions allowing for freedom of response. Sekayi and Kennedy (2017) indicated that a classical Delphi methodology is often used in health and social science research when developing a screening tool due to the ability to converge opinions from a wide variety of experts and reach consensus. Further, the Delphi methodology was appropriate for this study as it allowed researchers to use several rounds of feedback for revision and improvement of the screening tool after each consecutive round (Hasson et al., 2000). Delphi study methodology is used in occupational and physical therapy practice to provide the foundational psychometric testing needed to validate a survey tool in areas where evidence and research are lacking, such as oncology care (Falzarano & Pinto Zipp, 2013). Previous to this project, a group performed the first round of this Delphi study, including a deductive and inductive approach to item writing and included a set of open-ended questions allowing for freedom of response. The deductive approach was conducted by thematically analyzing oncology literature and using the Occupational Therapy Practice Framework to guide item writing specific to occupational performance limitations in survivorship. Researchers used an inductive approach to verify the items that were issues relevant to cancer survivor panelists. Participants While researchers that have used Delphi methodology have not clearly defined an expert, experts may include informed individuals, specialists in the field, or someone who knows about a specific subject (Keeney et al., 2001). An expert can also include an individual who has worked within an area for a certain length of time (Hardy et al., 2004; Jeffery et al., 2009). Qualified expert panelists included occupational therapists (OT), certified occupational therapy assistants (COTA), and OT researchers who practice and study in oncology. The inclusion of OT Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 33 of 61 practitioners required expert panelists to have at least five years of clinical experience with a 30% caseload of adult cancer survivors. OT researchers required a published oncology-related article. Exclusion from this study involved OT practitioners serving the pediatric oncology population because the SOCS-OTS is for the adult population. Purposive and snowball sampling recruitment methods occurred through our professional networks, posting on forums on AOTA.org, and social media platforms. Instrument Under the leadership of the principal investigator, a previous group of students developed an electronic questionnaire, The Screening of Cancer Survivorship-Occupational Therapy Services (SOCS-OTS), to indicate the need for occupational therapy services in survivorship care. The questions ask about everyday activities of daily living performed by cancer survivors, e.g., My cancer has made it difficult to engage in sexual activity with a partner or myself. Survivors indicated their level of agreement with each question on the tool on a five-point scale: I cannot do this, I have a lot of problems with doing this, I have some problems doing this, I can do this well, I can do this very well. A five-point Likert scale is the most commonly utilized Likert scale in empirical research. Researchers indicate that a 5-point Likert scale produces greater validity, reliability, and variance in response than scales with fewer items (Dawes, 2012). The current tool requires a true consensus from experts in the field to indicate item inclusion in its final rendition, which researchers will gather in this study. See Appendix A for an original questionnaire of SOCS-OTS. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 34 of 61 Data Collection Round 2 The second round of the overall classical Delphi study for this project consisted of a survey containing quantitative and qualitative methods that researchers developed from cancer survivors in Round 1. Researchers sent an ordinal questionnaire to participants in Round 2. Expert panelists indicated whether or not to include each item on the tool through a yes, yes with revisions, or remove ordinal questionnaire and provided qualitative feedback on improvements for each item. An overall additional qualitative question at the end of the survey asked experts to indicate missing items they felt should be included on the tool. Additionally, expert panelists provided feedback about the scale used in the SOCS-OTS and any additional general feedback. Round 2 concluded after 24 days, with follow-up emails sent to expert panelists on day 7, day 12, and day 14. Due to the limited number of responses, our initial response time frame was changed from 14 days to 24 days to gain more participants. Round 3 In Round 3, researchers sent out another ordinal questionnaire to panelists to determine which items were essential to include on the SOCS-OTS. The expert panelists rated each item on a 5-point Likert scale of importance, rating 1 (Unimportant) to 5 (Very Important). Additionally, panelists provided feedback on the updated format of the tool itself and any additional general feedback about items. Round 3 concluded after 18 days, with follow-up emails sent out to expert panelists on day 7, day 12, day 14, and day 17. Due to the limited number of responses, our initial response time frame was changed from 14 days to 18 days to gain more participants. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 35 of 61 Round 4 In the fourth and final round, researchers sent the revised questionnaire to expert panelists following further adjustment to the tool using expert feedback from Round 3. The final questionnaire consisted of items that met consensus after Round 3. Panelists indicated whether the item must be included or removed from the tool. Round 4 concluded after 35 days. Researchers sent follow-up emails to the panelists after 7 days, 9 days, 11 days, 12 days, 13 days, 24 days, and 29 days. Researchers intended to close Round 4 after 14 days, but due to limited participation was extended to 35 days. Round 4 received 14 responses, and the researchers verified the final version of the SOCS-OTS. On the final version, 20 items remained after researchers removed 2 items due to unmet consensus. Data Analysis Panelists responses were collected and analyzed using Qualtrics (Qualtrics, Provo, UT), which is an online survey development software. Researchers collected these responses after each round to obtain quantitative data. Although there is no set consensus value when using the Classical Delphi technique, many studies use 80% consensus, which was the consensus chosen for this study (Keeney et al., 2006). To be in consideration for the next rendition of the screening tool, items needed to reach the minimum consensus. Researchers used thematic analysis and open, axial, and selective coding to interpret experts' comments and feedback and guide appropriate modifications to the survey before sending it out for subsequent rounds. Researchers analyzed data through all three rounds regardless of the attrition of expert panelists. After the Delphi process, researchers sent the final results to the participating panelists through Qualtrics. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 36 of 61 Results Round 2 In Round 2 of our Delphi study, researchers sent the survey to 75 panelists through Qualtrics and gathered 27 responses. Nine panelists did not meet expert criteria, so researchers only included 18 responses in data collection. See Appendix A for Round 2 screening tool sent for expert feedback. After analysis of feedback provided by participants, researchers made changes to the items on the SOCS-OTS for clarity based on themes generated. Five items did not meet consensus and were modified using expert feedback. Items that did not meet consensus included Engage in sexual activity with a partner or myself, Maintain closeness and intimacy with a romantic partner, Move from one position or place to another, Do my yard work, and Fully return to work. Six items including Drive and move around the community, Manage my health, Toilet and toilet hygiene, Engage in religious/spiritual activities, organizations, and/or practices, Dress/undress, and Personal hygiene and grooming were added to the screen using expert recommendations. See Table 1 for Round 2 consensus levels. Per expert panelist feedback on the scaling technique, researchers changed the tool to a check all that apply format. Instead of having clients rate their difficulty level, this new format allows clients to indicate which items they find difficult and would like assistance completing. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 37 of 61 Table 1 Consensus Levels for Round 2 Items Consensus Bathe and/or shower Engaging in sexual activity with a partner or myself Maintain closeness and intimacy with a romantic partner Provide care for other people and/ or pets Move from one position or place to another Manage finances Maintain my exercise routine and physical fitness 100% 64.70%* 70.59%* 88.89% 61.11%* 100% 83.33% Manage my medications 94.44% Clean my home 83.33% Do my yard work 77.78%* Perform home maintenance and repairs 83.33% Plan, prepare, serve and/or clean up meals 83.33% Grocery shop 83.33% Rest and sleep 94.44% Fully return to work 72.22%* Perform my job duties at prior level of expectation 88.89% Engage in educational activities 88.89% Participate in leisure activities 94.44% Socialize with my family and friends 100% Participate in community events 100% Note. * indicates items that did not meet consensus. Round 3 In Round 3, researchers collected 15 total responses. Based on the feedback received, two items did not meet consensus, including Doing my yard work and Performing home maintenance and repairs. Researchers removed these two items from the SOCS-OTS entirely and sent out an updated revision in round 4. See Table 2 for Round 3 consensus levels. Researchers modified a few of the items with added clarification, where the experts expressed Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 38 of 61 appreciation for the use of the updated vocabulary. In regards to the check all that apply format, the experts provided positive feedback, expressing that the new set-up is relevant and easier for the readers comprehension. Table 2 Consensus Levels for Round 3 Items Consensus Bathe and/or shower 100% Manage finances 93.33% Clean my home 86.67% Do my yard work 66.67%* Perform home maintenance and repairs 53%* Plan, prepare, serve and/or clean up meals 93.33% Rest and sleep 100% Engage in educational activities 80% Participate in leisure activities 100% Socialize with my family and friends 100% Participate in community events 86.67% Engage in sexual activity and/or sexual expression (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse) 100% Engage in activities to give and receive affection needed to successfully interact in close personal relationships (e.g., friends, family members, intimate partners) 93.33% Provide care for others (e.g., childcare, caring for older parents, etc.) 93.33% Move self from one position or place to another (e.g., reaching, moving in bed, moving in wheelchair, performing transfers, walking during tasks and transporting items) 100% Maintain my desired exercise routine and physical fitness 93.33% Manage my medications (e.g. filling prescriptions at the pharmacy, understanding medication instruction, taking medications on a routine basis, refilling prescriptions in a timely manner) 93.33% Grocery shop (e.g., prepare grocery list, order online/go to store, bag groceries, unloading groceries, paying) 86.67% Engage in desired work performance and/or returning to work 93.33% Drive and move around the community (e.g., using public or private transportation) 93% Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 39 of 61 Manage my health (e.g., communicate with healthcare providers, understand recommendations for care plan, manage symptoms and conditions, etc.) 93.33% Toilet and toilet hygiene 100% Engage in religious/spiritual activities, organizations, and/or practices 86.67% Dress/undress (e.g., fasten and adjust clothing and shoes, remove personal devices/prosthetic devices/splints) 93.33% Personal hygiene and grooming 93.33% Note. * indicates items that did not meet consensus. Round 4 In Round 4 of our Delphi Study, we collected 14 survey responses from expert panelists. Three items did not meet consensus, which included Engage in leisure activities, Participate in community events, and Engage in religious/spiritual activities, organizations, and/or practices. See Table 3 for Round 4 consensus levels. Researchers removed these three items from the SOCS-OTS entirely. Researchers did not modify any items following the conclusion of this round as the remainder of the items reached consensus. Experts expressed general positive feedback about the SOCS-OTS and that it will be a valuable tool to identify the need for OT services. See Appendix D for the final version of SOCS-OTS. Table 3 Consensus Levels for Round 4 Items Consensus Bathe and/or shower 100% Manage finances 100% Clean my home 85.71% Plan, prepare, serve and/or clean up meals 100% Rest and sleep 100% Engage in educational activities 57.14%* Participate in leisure activities 100% Socialize with my family and friends 100% Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 40 of 61 Participate in community events 57.14%* Engage in sexual activity and/or sexual expression (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse) 100% Engage in activities to give and receive affection needed to successfully interact in close personal relationships (e.g., friends, family members, intimate partners) 100% Provide care for others (e.g., childcare, caring for older parents, etc.) 92.86% Move self from one position or place to another (e.g., reaching, moving in bed, moving in wheelchair, performing transfers, walking during tasks and transporting items) 85.71% Maintain my desired exercise routine and physical fitness 92.86% Manage my medications (e.g. filling prescriptions at the pharmacy, understanding medication instruction, taking medications on a routine basis, refilling prescriptions in a timely manner) Grocery shop (e.g., prepare grocery list, order online/go to store, bag groceries, unloading groceries, paying) 100% 85.71% Engage in desired work performance and/or returning to work 100% Drive and move around the community (e.g., using public or private transportation) 100% Manage my health (e.g., communicate with healthcare providers, understand recommendations for care plan, manage symptoms and conditions, etc.) Toilet and toilet hygiene 92.86% 100% Engage in religious/spiritual activities, organizations, and/or practices Dress/undress (e.g., fasten and adjust clothing and shoes, remove personal devices/prosthetic devices/splints) Personal hygiene and grooming Note. * indicates items that did not meet consensus. 78.57%* 100% 100% Discussion In this modified Delphi study, researchers aimed to identify the level of consensus on which items should appear on the final SOCS-OTS tool. There are currently no developed screening tools used in practice to indicate the need for referral to occupational therapy in survivorship care, despite evidence that occupational performance limitations occur from side effects of cancer treatment. Pergolotti et al. (2020) found in ovarian cancer survivors, functional limitations lead to physical, social, and emotional problems, which occupational therapy can Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 41 of 61 address. Survivors reported deficits in areas of daily living, work, and physical activity, which correlate with decreased quality of life (Pergolotti et al., 2020). Martin et al. (2020) further explored the impact of survivorship on occupational performance. They identified six limited domains of occupation: social activity, physical activity, sexual activity, employment and role functioning, physical functioning, and self-care. Side effects of cancer treatment, including urinary dysfunction, fatigue, anxiety, weakness, and pain, impact these occupational domains (Martin et al., 2020). Per Martin et al. (2020), these limitations can result in depression, anxiety, and reduced quality of life among survivors. Thus, the side effects of cancer treatment can have detrimental implications on occupational performance. According to Hwang et al. (2015), among 30 of the 68 participants (45.5%) who received referrals, 13 participants (19.7%) reported having a physical therapy referral for survivorship care, yet only 3 (4.5%) received occupational therapy. Similarly, Pergolotti et al. (2014) conducted a population-based survey finding that of the 87% of older cancer survivors in need of occupational therapy, only 32% saw occupational therapy within the first two years of their cancer diagnosis, further reinforcing the underutilization of occupational therapy in cancer survivorship. While survivors continue to experience occupational performance deficits following cancer treatment and occupational therapy services are being underutilized, there is also a lack of referral to occupational therapy services (Martin et al., 2020). The ASCO SCP does not include various kinds of life activities (occupations) inhibited in cancer survivorship and would indicate a referral to needed occupational therapy services (American Society of Clinical Oncology, 2019). Doucet and Gutman (2013) called for the need for occupational therapy researchers to design measurement tools that provide quantifiable data on function in areas including body Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 42 of 61 impairment, activity limitation, and participation restriction. Using this quantifiable data, practitioners could indicate the need for occupational therapy services, justify their role in the healthcare system, and improve the quality of life among clients with functional impairments (Doucet & Gutman, 2013). Researchers in the current study gathered consensus from experts in oncology to determine item inclusion on the SOCS-OTS final rendition. The items on the SOCS-OTS include everyday activities of daily living that are frequently stated as participation restrictions by cancer survivors, e.g., My cancer has made it difficult to engage in sexual activity with a partner or myself. According to the American Occupational Therapy Association (2014), cancer treatment can negatively impact every aspect of the occupation. The most highly rated items on the final SOCS-OTS addressed the following areas of occupation: bathing and dressing, managing finances, feeding/eating, rest and sleep, social participation, sexual activity and intimacy, medication management, work, and community mobility. Literature shows that cancer survivors experience limitations in social participation, leading to decreased quality of life (Martin et al., 2020). Chemotherapy and other cancer treatments can lead to a decline in strength, fatigue, depression, and pain which influences the ability to return to work (Martin et al., 2020). Occupational therapy can positively impact these factors related to their ability to return to work (Wallis et al., 2020). Hwang et al. (2015) stated that cancer survivors often report experiencing decreased sexual drive, poor body image, and sexual discomfort, which limit their ability to participate in sexual activity. Survivors listed hygiene as one of the most important occupational performance deficits experienced by cancer survivors in a study conducted by Marciniak et al. (1996). Hwang et al. (2015) identified the occupational performance limitations cancer survivors face leading to a decreased quality of life. Items of Engage in education activities," "Participate Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 43 of 61 in community events," and "Engage in spiritual/religious activities, organizations, and/or practices" did not meet consensus. There was limited research to support these items, which may have impacted the experts recommendations to remove these items from the tool. Limitations and Future Research It is important to recognize the limitations of this study. First, we faced attrition in this study with 27 initial panelists in round 2; therefore, we had a small sample size of expert panelists that diminished to 14 by round 4. Literature on Delphi methodology states that 30 panelists are ideal (Hasson et al., 2000; Powell, 2003). In accordance with previous Delphi studies, researchers expected an attrition rate of 20% for a Delphi study of 3 rounds (Henderson & Rubin, 2012). Some possible issues related to this more significant attrition rate were that active data collection happened around a holiday break and during a global pandemic. The first round of the Delphi study included a majority of participants who were breast cancer survivors. Therefore, this may be problematic when considering the development of the screening tool as certain forms of cancer can have different effects on various occupations. Future research supporting the SOCS-OTS should focus on developing its psychometric properties, such as a formal validation of its scale and exploring how many responses indicate the need for an OT referral. Additionally, reliability studies are warranted involving a variety of cancer diagnoses. Future researchers should also explore distress screeners or current survivorship care plans to screen for side effects of cancer and identify which items on these screening tools would trigger the need to use the SOCS-OTS for possible OT referral. Implications for Occupational Therapy Practice To address the broad spectrum of occupational performance issues related to survivorship care, health care providers must recognize what clients require an occupational therapy referral at Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 44 of 61 various points in the survivorship continuum. Occupational therapy practitioners can take action with improving screening services for cancer survivors in the following ways: Educate referral sources on the distinct value of OT in oncology care. OT has distinct value in oncology care because of the skill set. Occupational therapists work with survivors on their physical and psychosocial needs to improve various occupational performance deficits they face due to cancer treatment. While many healthcare providers focus on the side effects survivors face, OTs focus on how those side effects affect their everyday function and performance in daily tasks (Sleight & Duker, 2016). Discuss with oncology teams the importance of screening for occupational performance deficits using screening tools like SOCS-OTS. Introduce SOCS-OTS to frontline practitioners in oncology care, including nurse navigators, oncologists, and other members of multidisciplinary oncology teams. Adopt and incorporate the SOCS-OTS into screening procedures and care coordination, including its potential implementation into distress screening tools and survivorship care plans. Conclusion There is currently no developed screening tool indicating occupational performance deficits and the need for referral to occupational therapy in the cancer survivor population. This gap in screening services led to the development and need for formal validation of the SOCSOTS. Items included in the final version of the SOCS-OTS tool, following expert consensus, addressed the degree of difficulty clients have performing occupations following cancer treatment. They specifically addressed activities of daily living and instrumental activities of daily living. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 45 of 61 In the first round of the Delphi study, researchers used the opinion of cancer survivors for validation of screening tool items they developed from a thorough literature review. In the second round (and current study), researchers used expert panelists, including occupational therapists (OT), occupational therapy assistants (OTA), and OT researchers that practice and contribute to the research in the field of occupational therapy in oncology. In health science research, researchers commonly select a Delphi approach to eliminate biases, allow opinions from a variety of experts, and have the opportunity for revision and feedback following each round of the Delphi until they reach consensus (Avella, 2016; Hasson et al., 2000; Sekayi & Kennedy, 2017). Practitioners in oncology care can use the SOCS-OTS tool to identify activities that the client cannot perform to their satisfaction. Further work may be needed to refine and test the tool in a clinical setting to ensure its feasibility and effectiveness in client-centered care. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 46 of 61 References American Occupational Therapy Association. (2014). 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Survivorship care planning after the Institute of Medicine recommendations: How are we faring? Journal of Cancer Survivorship, 5(4), 358-370. doi: 10.1007/s11764011-0196-4 Suija, K., Kordemets, T., Annuk, K., & Kalda, R. (2015). The Role of General Practitioners in Cancer Care: A Mixed Method Design. Journal of Cancer Education, 31, 136-141. https://doi.org/10.1007/s13187-015-0834-z Syrjala, K. L., Stover, A. C., Yi, J. C., Artherholt, S. B., & Abrams, J. R. (2010). Measuring social activities and social function in long-term cancer survivors who received hematopoietic stem cell transplantation. Psychooncology, 19(5), 462-471. doi:10.1002/pon.1572 Thomas-Maclean, R. L., Hack, T., Kwan, W., Towers, A., Miedema, B., & Tilley, A. (2008). Arm morbidity and disability after breast cancer: New directions for care. The Oncology Nursing Forum, 35(1), 65-71. doi:10.1188/08.ONF.65-71 Thomas, R., Thomas, F. H., Quinlan, E., Tatemichi, S., Towers, A., Kwan, W., Tricia, M. (2015). Loss, adaptation and new directions: The impact of arm morbidity on leisure activities following breast cancer. Canadian Oncology Nursing Journal, 25(1), 49-53. doi:10.5737/236880762514953 Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 56 of 61 Thorsen, L., Gjerset, G. M., Loge, J. H., Kiserud, C.E., Skovlund, E., Fltten, T., & Foss, S. D., (2011). Cancer patients needs for rehabilitation services, ACTA Oncologica, 50(2), 212-222. https://doi.org/10.3109/0284186X.2010.531050 Wallis, A., Meredith, P., & Stanley, M. (2020). Cancer care and occupational therapy: A scoping review. Australian Occupational Therapy Journal, 67(2), 172 194. https://doi.org/10.1111/1440-1630.12633 Yim Loh, S., & Jonsson, H. (2016). Cancer survivorship care: A perspective from an occupational-participation approach. Journal of Cancer Science & Therapy, 8(7), 179-184. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 57 of 61 Appendix A SOCS-OTS Please rate your level of functioning as it pertains to each item presented below. I cannot do this I have a lot of problems with doing this I have some problems with doing this I can do this well I can do this very well Bathe and/or shower Engage in sexual activity with a partner or myself Maintain closeness and intimacy with a romantic partner Provide care for other people and/or pets Move from one position or place to another Manage finances (i.e. processes of paying bills, budgeting, simple money transaction) Maintain my exercise routine and physical fitness Manage my medications Clean my home Do my yard work Perform home maintenance and repairs Plan, prepare, serve, and/or clean up meals. Grocery shop Rest and sleep Fully return to work Perform my job duties at prior level of expectation Engage in educational activities Participate in leisure activities Socialize with my family and friends Participate in community events Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 58 of 61 Appendix B Screen of Cancer Survivorship Occupational Therapy Services (SOCS-OTS) Instructions: Please check all items that you would like assistance with improving. Item Please check all that apply Bathe and/or shower Engage in sexual activity and/or sexual expression (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse) Engage in activities to give and receive affection needed to successfully interact in close personal relationships (e.g., friends, family members, intimate partners) Provide care for others (e.g., childcare, caring for older parents, etc.) Move self from one position or place to another (e.g., reaching, moving in bed, moving in wheelchair, performing transfers, walking during tasks and transporting items) Drive and move around the community (e.g., using public or private transportation) Manage finances Maintain my desired exercise routine and physical fitness Manage my medications (e.g. filling prescriptions at the pharmacy, understanding medication instruction, taking medications on a routine basis, refilling prescriptions in a timely manner) Clean my home Do my yard work Perform home maintenance and repairs Plan, prepare, serve and/or clean up meals Grocery shop (e.g., prepare grocery list, order online/go to store, bag groceries, unloading groceries, paying) [modified item Rest and sleep Engage in desired work performance and/or returning to work Engage in educational activities Participate in leisure activities Socialize with my family and friends Participate in community events Manage my health (e.g., communicate with healthcare providers, understand recommendations for care plan, manage symptoms and conditions, etc.) Toilet and toilet hygiene Engage in religious/spiritual activities, organizations, and/or practices Dress/undress (e.g., fasten and adjust clothing and shoes, remove personal devices/prosthetic devices/splints) Personal hygiene and grooming Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 59 of 61 Appendix C Screen of Cancer Survivorship Occupational Therapy Services (SOCS-OTS) Instructions: Please check all items that you would like assistance with improving. Item Please check all that apply Bathe and/or shower Engage in sexual activity and/or sexual expression (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse) Engage in activities to give and receive affection needed to successfully interact in close personal relationships (e.g., friends, family members, intimate partners) Provide care for others (e.g., childcare, caring for older parents, etc.) Move self from one position or place to another (e.g., reaching, moving in bed, moving in wheelchair, performing transfers, walking during tasks and transporting items) Drive and move around the community (e.g., using public or private transportation) Manage finances Maintain my desired exercise routine and physical fitness Manage my medications (e.g. filling prescriptions at the pharmacy, understanding medication instruction, taking medications on a routine basis, refilling prescriptions in a timely manner) Clean my home Plan, prepare, serve and/or clean up meals Grocery shop (e.g., prepare grocery list, order online/go to store, bag groceries, unloading groceries, paying) [modified item Rest and sleep Engage in desired work performance and/or returning to work Engage in educational activities Participate in leisure activities Socialize with my family and friends Participate in community events Manage my health (e.g., communicate with healthcare providers, understand recommendations for care plan, manage symptoms and conditions, etc.) Toilet and toilet hygiene Engage in religious/spiritual activities, organizations, and/or practices Dress/undress (e.g., fasten and adjust clothing and shoes, remove personal devices/prosthetic devices/splints) Personal hygiene and grooming Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 60 of 61 Appendix D Screen of Cancer Survivorship Occupational Therapy Services (SOCS-OTS) Instructions: Please check all items that you would like assistance with improving. Item Please check all that apply Bathe and/or shower Engage in sexual activity and/or sexual expression (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse) Engage in activities to give and receive affection needed to successfully interact in close personal relationships (e.g., friends, family members, intimate partners) Provide care for others (e.g., childcare, caring for older parents, etc.) Move self from one position or place to another (e.g., reaching, moving in bed, moving in wheelchair, performing transfers, walking during tasks and transporting items) Drive and move around the community (e.g., using public or private transportation) Manage finances Maintain my desired exercise routine and physical fitness Manage my medications (e.g. filling prescriptions at the pharmacy, understanding medication instruction, taking medications on a routine basis, refilling prescriptions in a timely manner) Clean my home Plan, prepare, serve and/or clean up meals Grocery shop (e.g., prepare grocery list, order online/go to store, bag groceries, unloading groceries, paying) [modified item Rest and sleep Engage in desired work performance and/or returning to work Participate in leisure activities Socialize with my family and friends Manage my health (e.g., communicate with healthcare providers, understand recommendations for care plan, manage symptoms and conditions, etc.) Toilet and toilet hygiene Dress/undress (e.g., fasten and adjust clothing and shoes, remove personal devices/prosthetic devices/splints) Personal hygiene and grooming (e.g., using a razor, applying cosmetics, combing or brushing hair, caring for nails, applying deodorant, brushing/flossing teeth, denture care) Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 61 of 61 Signature Certificate Document Ref.: XRFVX-UNFIU-DBXKN-D3NR6 Document signed by: Katie Polo Verified E-mail: polok@uindy.edu IP: 184.170.166.188 Date: 15 Dec 2021 13:19:32 UTC Kate DeCleene Huber Verified E-mail: decleenek@uindy.edu IP: 199.8.28.36 Date: 15 Dec 2021 13:26:27 UTC Document completed by all parties on: 15 Dec 2021 13:26:27 UTC Page 1 of 1 Signed with PandaDoc.com PandaDoc is a document workflow and certified eSignature solution trusted by 25,000+ companies worldwide.  ...

... Running head: ENHANCING CULTURALLY COMPETENT CARE 1 Enhancing Culturally Competent Care in a Level III NICU: A Pilot Study Celia Heckert 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: Alison Nichols, OTR, OTD RUNNING HEAD: EHNANCING CULTURALLY COMPETENT CARE 2 Abstract This study aims to identify the unique barriers to providing culturally competent care at IU Health North, analyze the benefits of a pilot module on cultural competence in the neonatal intensive care unit (NICU), increased pre-translated resources, and create a sustainability plan to expand the pilot module to other hospital departments. I completed a needs assessment to identify common barriers to meeting patients linguistic needs by interviewing 20 staff. The main barriers identified in the needs assessment were lack of awareness of available language services and the disconnect between the language and cultural barrier. Based on these results, NICU staff would benefit from simplified language service resources to increase staffs comfort and confidence, as well as a module to educate staff on language services and cultural competence. Staffs competence with language services and confidence with providing culturally competent care were assessed during the needs assessment and after they completed the module. Staff in the NICU demonstrated improvements in both competence with language services and confidence with providing culturally competent care. Collaboration with other team members ensured that this module would be expanded to other hospital departments and monitored for efficacy. CULTURALLY COMPETENT CARE IN A LEVEL III NICU 3 Introduction Background I completed my doctoral capstone experience (DCE) at Indiana University Health North (IU Health North) in their Level III neonatal intensive care unit (NICU). IU Health North has a 24-bed NICU with neontologists, nurses, nurse practitioners, respiratory therapists, occupational therapists, physical therapists, and speech therapists constantly working to provide the infants admitted into the NICU with the appropriate medical and therapeutic treatments. The overarching intent of this project was to provide staff education that would increase the quality of care that IU Health North NICU employees are able to provide for culturally diverse caregivers or caregivers with limited English proficiency (LEP). Theoretical Basis The Social-Ecological theory is a model that health advocates use to understand the complex dynamic between an individual, interpersonal relationships, institutional factors, their community, and societal factors (Center for Disease Control and Prevention, 2021; Golden & Earp, 2012). I used this theory to guide my project as it outlines the same progression of cause and effect that I anticipated with my project. While following this framework, I was able to address IU Health employees individual factors (i.e. personality, knowledge) and the institutional aspects of IU Health (i.e. policies, culture of the NICU) that impacted staff members relationships with caregivers. Then, I analyzed community factors (i.e. social norms, views on immigration) and public policy (i.e. laws protecting marginalized patients in healthcare) to identify how these overarching ideas were influencing individuals behaviors, the patient-healthcare worker relationships, and IU Health Norths policies and guidelines. The main goal of utilizing the social-ecological theory is to prevent poor health outcomes by recognizing CULTURALLY COMPETENT CARE IN A LEVEL III NICU 4 the importance of each of the aforementioned aspects and how they interact with each other at the same time (Center for Disease Control and Prevention, 2021; Golden & Earp, 2012). As my goal is prevent poorer outcomes for families who have limited English proficiency by identifying individual, institutional, and societal barriers to providing high-quality care, the social-ecological theory is an appropriate theory for me to follow as I complete my project. Similarly to the social-ecological theory, the model of social interaction is a framework that recognizes that each individual is an open system who is constantly influenced by their social and cultural (Doble & Magill-Evans, 1992). The social-ecological theory outlined the importance of understanding the large- and small-scale barriers to providing high-quality care to culturally diverse patients or patients with LEP; however, the model of social interaction will provide the framework for me to educate staff appropriately and efficiently. The model of social interaction recognizes that an individual acts in accordance with social norms in a way that still fulfills their desires and habits (Doble & Magill-Evans, 1992). By understanding an individuals volition and current social performance, I can tailor staff education to meet the overall needs of IU Health North NICUs staff in a way that is socially appropriate, motivating, and nondisruptive to staffs current work processes. By utilizing the social-ecological theory and model of social interaction, I am analyzing team members individual behavior, motives, and beliefs that impact and are impacted by society, IU Health North, and relationships with other team members or patients. Understanding and attempting to influence these conscious and unconscious thoughts and behaviors held by staff is a daunting task. Therefore, I will employ the ideas presented by the psychoanalytic frame of reference (Nicholls, Cunningham-Piergrossi, de Sena-Gibertoni, & Daniel, 2013). While utilizing the psychoanalytic frame of reference, I can analyze staffs behaviors, emotions, CULTURALLY COMPETENT CARE IN A LEVEL III NICU 5 workspace, and current use of language services to better understand their conscious and unconscious thoughts and ideas of the cultural and language barriers present in the NICU (Nicholls, Cunningham-Piergrossi, de Sena-Gibertoni, & Daniel, 2013). By analyzing staffs conscious and unconscious behaviors and encouraging them to do the same, I can then understand how cultural, social, and interpersonal factors affect and are affected by these individual behaviors and thoughts. Caregiver Involvement in the NICU An infant admitted into the NICU will receive specialized medical treatment and therapeutic services, with evidence supporting the improvement of the infants short- and longterm health. Caregivers should be as involved in care during their infants NICU stay as possible to enhance caregiver satisfaction and the infants immediate and future health outcomes (Frank, 2019; Hannan & Borque, 2020; OBrien et al., 2018). Active caregiver involvement during their infants NICU stay supports long term neurodevelopment, weight gain, healthy parent-infant attachment, and breastfeeding success, while also decreasing length of stay and parental stress and depression (Forcada-Guex, Pierrehumbert, Borghini, Moessinger & Muller-Nix, 2006; Frank, 2019; Hane et al., 2015; Hannan & Borque, 2020; Lee & OBrien, 2014; Newham, Milgrom, & Skouteris, 2019; Welch et al., 2015). When caregivers experience NICU-related stress or depression, their child is more likely to experience delays in social and functional development (Franck, 2019; McManus & Poehlmann, 2012; Rahkonen et al., 2014). Regardless of caregiver involvement during their infants NICU stay, a majority of infants born prematurely or with a very low birth weight still demonstrate significant functional outcomes at age 5 (American Occupational Therapy Association [AOTA], 2018; Heiny, Wolf, Collins, Durrant Kellner, & Pineda, 2020; Ross, Heiny, Conner, Spener, & Pineda, 2018). CULTURALLY COMPETENT CARE IN A LEVEL III NICU 6 However, children with these neurodevelopmental delays who receive appropriate medical and therapeutic attention during and after their NICU stay experience significantly fewer delays at a later age (Heiny at al., 2020; Miquel-Verges, Donohue, & Boss, 2011; Swearingan, Simpson, Cabacungan, & Cohen, 2019). For these reasons, caregiver education is critical in the NICU. Caregivers who self-identify or are identified by staff as less prepared at discharge are significantly more likely to experience readmission to the NICU or emergency department visits (Bernstein et al., 2013; Gupta, Pursley, & Smith 2019). Appropriate preparation for discharge includes educating caregivers about the medical history of their infant, ensuring the caregivers emotional needs are met, and instilling confidence in the caregivers to take their infant home (Bernstein et al., 2013; Gupta et al., 2019). The caregivers are ultimately relying on high quality care and communication between the care team in order to meet these standards of care. Limitations to Parent Involvement Despite the importance of collaboration between caregivers and healthcare providers, family units of varying socioeconomic status (SES), race, health status, and geographic location receive varying levels of NICU and post-NICU care. The United States of America has always been a nation to embrace diversity and welcome immigrants. However, immigrants in this country are more likely to have lower SES, health status, education, and to face more barriers due to their race or geographical location than non-immigrant American citizens, and therefore receive poorer quality of NICU and post-NICU care. Currently, immigrants account for 13.7% of Americas population with nearly every country in the world represented (Budiman, 2020; Budiman, Tamir, Mora, & Noe-Bustamante, 2020). This has led to more patients in the healthcare system who speak different languages and have different cultural expectations of healthcare, yet also face other systematic barriers as mentioned above (Ahmed, Lee, Shommu, CULTURALLY COMPETENT CARE IN A LEVEL III NICU 7 Rumana & Turn, 2017). Out of the 25 million Americans who speak a language other than English at home, 8.4% report limited English proficiency (LEP), phrased as not speaking English well, (U.S. Census Bureau, 2019). In 2012, 7.8% of all infants born required NICU care (Harrison & Goodman, 2015). Therefore, it is likely that millions of caregivers every year in the NICU will experience difficulty communicating with the healthcare providers that provide direct care for their infant, even with the aid of interpreters or translated resources. Families with LEP face a unique barrier. Both the parents and children have more adverse experiences and utilize more healthcare services compared to families with English proficiency, yet they are more likely to experience poorer quality of care, less satisfaction, and more difficulty accessing healthcare (Al Shamsi, Almutairi, Mashrafi, & Al Kalbani, 2020; Ju, 2021; Murphy, Washington, Xuan, Paasche-Orlow, & Drainoni, 2019). When communicating with caregivers with LEP, physicians spend less time actively listening to caregivers concerns, give shorter explanations, show less signs of emotional support, and make more decisions about the infants care independently (Miquel et al., 2017). However, when assessing caregivers behavior, it appears as if caregivers bring up fewer concerns, do not inquire about deeper details, do not express emotional concerns, do not give input as frequently on their infants plan of care, and are satisfied with the level of care the receive (Miquel et al., 2017). Realistically, these issues in communication are neither partys fault, but it is the health care providers job to address these challenges as they have the expertise and resources to do so (Miquel et al., 2017). Because of this lack of communication, these caregivers are more likely to incorrectly identify their infants diagnosis and report less understanding of the interventions performed by neonatologists, nurses, and occupational, physical, and speech therapists (Palau et al., 2018). These families who are not proficient in English are also less likely to be referred to and to participate in early intervention CULTURALLY COMPETENT CARE IN A LEVEL III NICU 8 services (Litt & Perrin, 2014; Miquel-Verges et al., 2011; Palau et al., 2018). This hesitancy and apparent satisfaction with not being directly involved in their own or their infants care partially derives from certain cultures associating more of a social hierarchy between physicians and themselvesseeing themselves as not valuable to the care team (Ahmed et al., 2017). Previous negative healthcare experiences also dissuade patients or caregivers from speaking up in the assumption that the physicians will not value their input or for fear of being stereotyped (Ahmed et al., 2017). Similarly to patients and caregivers who are not confident in advocating for themselves, physicians are also insecure about their ability to communicate effectively with patients with LEP. Physicians hesitate to have conversations that they would typically have for the presumptions that they are saving valuable time, that they will be misunderstood, or that the patients or caregivers are less likely to understand anyway (Ahmed et al., 2017). This lack of initiation from physicians makes it even less likely that patients or caregivers will go out of their way to make themselves a part of the care team. Attempts to Increase Care All barriers listed above can be accounted for by an overall lack of cultural competence throughout the healthcare system. Cultural competence is a health care organizations ability to provide care that meets the social, cultural, and linguistic needs of its patients (AHA, 2013). Providing culturally competent care drastically reduces racial and ethnic health disparities by improving the relationship between patients and providers, increasing preventative care, reducing number of missed visits, and promoting community involvement (AHA, 2013). However, many hospitals still fail to meet all of the needs of their racially and ethnically diverse patients. Large organizations with a focus on patient care such as the Agency for Healthcare Research and CULTURALLY COMPETENT CARE IN A LEVEL III NICU 9 Quality (AHRQ), Joint Commission (JC), the American Hospital Association (AHA), and the Health Resources and Services Administration (HRSA) have conducted research on improvements to make in order to meet the social, cultural, and linguistic needs of culturally diverse patients. These organizations suggest accessible and high-quality language services, recurring education on cultural competence for staff, a more efficient intake process to gather data about the patients race, ethnicity, preferred language (REL) and cultural values, linking databases that collect REL data to increase access between providers, encouraging staff to report medical errors related to language or cultural circumstances, hiring minority staff, partnering with community organizations, and organizing a system to monitor the experience of LEP and culturally diverse patients (AHA, 2013; AHRQ, 2018; HRSA, 2020; JC, 2010). Despite these agreed-upon recommendations, many hospitals lack accessible and competent language services, policies about how to coordinate these services among staff, education for staff on cultural competence, staff that represent their patient population, or protocols to monitor the experience of patients with LEP (AHRQ, 2018; Bouye et al., 2013; Patient Safety Network, 2019). Hospitals fail to make these large scale changes due to financial and time constraints, despite staff support for these measures (Shepard, Willis-Esqueda, Newton, Sivasubraniam, & Paradies, 2019) Specifically, regarding the patients linguistic needs, the use of professional medical interpreters (PMIs) increases clinical outcomes, quality of care, satisfaction from patients, and the use of preventative and follow-up care (Gutman et al., 2018; Murphy et al., 2019; Ju, 2021). However, the use of PMIs in hospital settings is limited due to financial constraints, poor competency of available interpreters, under-recognition of the patients needs, and time constraints (Ahmed et al., 2017; Murphy et al., 2019). Additionally, patients or caregivers with LEP frequently rely on translators during their stay but do not feel comfortable communicating CULTURALLY COMPETENT CARE IN A LEVEL III NICU 10 with hospital staff as freely as English-speaking caregivers do (Ahmed et al., 2017; MiquelVerges et al., 2011). Some healthcare organizations with the necessary resources and funding are addressing these barriers and implementing different strategies to overcome them to improve patients experiences and outcomes. These strategies include increasing funding for more available and competent translators, providing educational resources in various languages, staff education on how to best care for families with LEP, and implementing digital applications such as MediBabble or Google Translate (Al Shamsi et al., 2019; Palau et al., 2018; Sigurdsdon, 2019; Swearingan, Simpson, Cabacungan, & Cohen, 2019). Despite evidence supporting the use of culturally competent care as a protectant to racial and ethnic health disparities, many health care organizations are still falling short in providing care that meets all patients cultural, social, and linguistic needs. Purpose of This Project The purposes of this project are: 1.) Identify barriers specific to IU Health North and their Level III NICU by conducting a hospital-wide needs assessment 2.) Implement an annual educational module, provide clearer handouts for staff to utilize, and allocate pre-translated documents for staff to provide as patient education 3.) Measure the effectiveness of these measures with a post-project questionnaire Methods Understanding of Barriers and Solutions The first thing I completed at my site was a needs assessment within the hospital to help guide the details of this project. There is enough literature about the importance of availability and competence of in-person interpreters and discharge information for families with LEP. CULTURALLY COMPETENT CARE IN A LEVEL III NICU 11 However, many hospitals still do not have the appropriate availability of resources required for staff to effectively communicate with families with LEP. Additional literature provides evidence that staffs lack of education and comfort with language services are barriers as well. However, each hospital is different and faces unique barriers. Therefore, the overarching intent of conducting the needs assessment was to collect data specific to IU Health North that would guide my project. Prior to conducting the needs assessment, I created a questionnaire to guide my interviews with staff members. The questionnaire (Appendix A) consisted of six questions: 2 checklists, 2 Likert scales, and 2 open ended-questions with each question allowing for more details to be added if the staff had additional comments to include. I filled out the questionnaire as I informally interviewed staff. The goal of the questionnaire was to gather data about the types of education provided, the value of printed educational resources, current procedures for scheduling interpreters, confidence when providing care for patients with LEP, and potential ideas to increase care for patients with LEP. I surveyed staff from various departments (i.e. outpatient pediatrics, NICU, adult inpatient rehab, etc.) and of various roles (i.e. occupational therapists, nurses, respiratory therapists, etc.). After conducting interviews, I analyzed the demographic data that consisted of the staff members role and department. Then I analyzed the short answers and checklists to identify common themes that staff reported. I cross-checked the themes that emerged from the complete data between themes that emerged from specific roles and departments to ensure that themes were representative of the hospital staff as a whole and that certain departments/roles were not over- or under-represented. Then, I analyzed the two Likert scales using univariate analysis. I completed this analysis for the composite data, for role- CULTURALLY COMPETENT CARE IN A LEVEL III NICU 12 specific data (i.e. all nurses), and for department-specific data (i.e. all staff in inpatient pediatrics). Creating Resources to Address Barriers Outline of Interpretation and Translation Services Based on information gathered during the needs assessment, it was clear that many staff were unaware of the interpretation and translation services available to them. I met with the Rehabilitation Manager, and she provided me with the current resources that staff have access to about language services. Then, I met with the manager of experience design, whose job is to identify barriers to patient satisfaction and ensure a positive patient experience across the hospital. She is the sole IU Health North Staff member who is responsible for language services as well. While collaborating with the manager of experience design, I created a single page handout that describes all available language services. I provided step-by-step instructions on how to use or request each interpretation service and how to get documents translated. Prior to finalizing the handouts, I conducted a test on each of the interpretation services to ensure the step-by-step directions were clear and accurate. Guidelines and Frequently Asked Questions I created a short handout explaining interpretation guidelines and frequently asked questions (FAQs). The guidelines in this handout were based on information provided by the Center for Disease Control (CDC) and from Appropriate Use of Medical Interpreters published in the journal American Academy of Family Physicians (2014). I also referenced the current available resources on interpretation guidelines that IU Health North has created, but it was extremely dated. I compiled the FAQs from common questions I got from staff, issues I ran into CULTURALLY COMPETENT CARE IN A LEVEL III NICU 13 when I attempted to use these services, and from information from the original language services procedures. Organizing Pre-Translated Documents The internet has several pre-translated documents specific to healthcare from reputable and accredited sources that I accumulated. When I found a new document, I decided whether it was most relevant to general medical staff, nursing, occupational therapy, physical therapy, lactation consultation, or speech language pathology. Based on my meeting with the rehabilitation manager and the manager of experience design, I met with staff members of each role and ensured they were comfortable and satisfied with the quality and content of the documents. The documents that got approved by staff members were organized in the NICU Nursing Report Room by language and then alphabetically within each language. Because there were some documents already pre-translated by the hospital in Spanish, I consulted the administrative assistants and charge nurses to honor the system they have in place but also to make these resources more accessible to other staff. In addition to searching the internet for pre-translated handouts, I consulted with the managers of clinical operations of the NICU at two hospitals within the IU Health hospital system. I completed site visits to assess how they organized, ordered, and tracked their translated documents and then took copies of each handout that they had in languages other than English. I organized them in the NICU Nursing Report Room at IU Health North as well. For example, I received a copy of an informational handout on male circumcision in Spanish and a handout about how to replace a nasogastric tube in Spanish, Burmese, Chin Hakha, and Chinese. Educating Staff Cultural Competence Module CULTURALLY COMPETENT CARE IN A LEVEL III NICU 14 I developed a module for all NICU staff to complete through their electronic Learning Module Service (eLMS) that educated staff on the importance of culturally competent care, health disparities in the NICU, available language services, available pre-translated resources, and guidelines for increasing efficacy of interpreter use. This module was assigned to all nurses and rehabilitation staff. The complete guidelines to educate healthcare staff on cultural competence from AHA, HRSA, and JC are too extensive to implement within the timeframe of this project. However, the outline denoted in AHRQs article Improving Patient Safety Systems for Patients with Limited English Proficiency was feasible to abide by. While following AHRQs recommendations, I still supplemented with suggestions and terminology outlined by AHA, HRSA, and JC. The educational principles of cultural competence denoted by AHRQ follows five steps: 1. outline goals of culturally competent care; 2. teach cross-cultural skills and educate staff on impact of sociocultural factors on health and health care; 3. briefly educate on cultural beliefs and traditions of most commonly served patients; 4. include case examples of how sociocultural factors impact communication; 5. relate back to diversity of staff and how that might lead into power or hierarchy struggles between staff and patients and encourage appreciation and open-communication (AHRQ, 2018). To meet these steps, my presentation included the goals of culturally competent healthcare, a breakdown of the hospitals most frequently requested languages, skills for staff to use when communicating with culturally diverse caregivers, and two NICU-relevant case studies that emphasized the importance of respect for other cultures and open communication. Then my presentation outlined the available translation and interpretation services with indications for use, how to request, and how to document each service after use. Based on information acquired in the needs assessment, staff were unaware of most interpretation services, CULTURALLY COMPETENT CARE IN A LEVEL III NICU 15 not confident in how to use the known services, and overall unaware of any translation services. This presentation was designed to give staff the information to make them more confident to engage with caregivers with LEP. I also outlined where else to search for pre-translated documents through IU Healths Electronic Medical Record program and through IU Healths team portal. Finally, I informed staff that new resources were added to the Nursing Report Room where patient education is kept. Staff were directed to take a short, three-question quiz following the presentation. They could not finish the module until they answered each question correctly after unlimited attempts. The questions were designed to ensure staff felt comfortable problem-solving cases where language services were required and that they understood the patient benefits of providing culturally competent care. Measuring the Efficacy of the Module I embedded a link to a post-questionnaire survey at the end of the pilot module for the NICU staff. The survey was not necessary for staff to take to pass the course but they were still encouraged to complete the short, 4-question form. The goal of this post-questionnaire was to gather data about staffs level of competence and confidence when providing care to a patient or caregiver with LEP or from a culturally diverse background so that I could track improvement from the needs assessment results. I aimed for 10 survey responses to match the 10 NICU staff initially interviewed in my needs assessment for equally representative data in my pre- and postassessments. I adjusted two of the questions from the needs assessment to better reflect the wording from the module. These changes can be noted in Appendix B. I also added I also included two optional open-response questions that asked Are there any details or topics that CULTURALLY COMPETENT CARE IN A LEVEL III NICU 16 would have been helpful to include in this module? and Are there any edits you would recommend making to this module to make it more beneficial to you? I analyzed the two Likert scales using univariate analysis. I analyzed the answers from the last two optional questions to identify common themes. If a suggestion was made more than once, I brought it to the attention of the manager of experience design. Then, the manager of experience design collaborated about the edits to make to the module before expanding to the other departments in the hospital. Results Needs Assessment The response rate of the needs assessment questionnaire was 100% as no staff member declined to participate or answer questions. Twenty hospital staff were interviewed from various units including: NICU (n=10), adult inpatient (MedSurg or Intensive Care Unit) (n=7), pediatric inpatient (n=6), pediatric outpatient (n=3), adult outpatient (n=1), and postpartum/antepartum (n=1). Seven staff roles, or departments, were interviewed consisting of: nurse (n=9), occupational therapist (OT) (n=3), physical therapist (PT) (n=3), speech language pathologist (SLP) (n=2), nurse practitioner (NP) (n=1), medical doctor (MD) (n=1), and a respiratory therapist (RT) (n=1). There were a total of eight rehabilitation (rehab) staff as identified by either being an OT, PT, or SLP and 2 practitioners as identified by being an MD or NP. This data is outlined in Table 1. The second question I asked was How important do you think written/print educational resources are for patients/caregivers? on a scale from 1 (not important at all) to 10 (extremely important). The mean for all staff regardless or department or unit was 8.15. When separated by units, the means were: NICU= 7.95, adult inpatient= 8.35, pediatric= 8.69, and outpatient adult= CULTURALLY COMPETENT CARE IN A LEVEL III NICU 17 10. When separated by departments, the means were: nursing= 7.55, OT= 8.66, PT= 9.66, SLP= 8.5, rehab= 9, practitioners= 7.5, and RT= 9.5. This data is outlined in Table 1. The third question I asked was to understand what a staff members process was if when they received a patient on their caseload with LEP. Several themes were noted with little variation between units or departments. The common themes that staff reported were using gestures and awkward snippets of language to get by, using the phone service and in-person translator with varying results, relying on the charge nurse or administrative assistant to handle the process, and having a general feeling of confusion around their role in providing language services for patients. First, when staff reported attempting to connect with caregivers or patients with gestures and limited language, the sense was that it was sufficient for routine care but it impacted rapport building and did not allow for any education to be provided. Then, the common difficulties expressed with utilizing a phone interpreter was that the phone interpreter, while easily accessible, was inefficient and seemed to cause more annoyance than relief. The difficulties noted regarding in-person interpreters were that they were hard to schedule due to the weird process and had limited availability for less common languages (and dialects). Without the charge nurses and administrative assistants, a majority of staff did not know of the available services or how to utilize them, let alone how to educate themselves on the staff portal. This adds to the general feeling of confusion and apathy towards language services and is compacted by misinformation about hospital guidelines regarding language services. Many staff reported that they were not sure of issues such as: who could and could not interpret and why (i.e. family members, bilingual staff), translating documents, who to contact with questions about language services. CULTURALLY COMPETENT CARE IN A LEVEL III NICU 18 The fourth question was Are you confident that you know all of the available translation or interpretation resources that you can use? If you are, can you list them? 75% (n=15) of staff reported knowing about in-person interpreters, 50% (n=10) of the staff reported knowing about the phone line, 35% (n=7) reported that they knew of available Spanish resources, 10% (n=2) knew about video interpreters, and 10% (n=2) reported that they knew about the service to get documents translated. 55% (n=11) reported that they were confident that they did not know all of the available resources (defined as less than a 5 out of 10). The staff that reported that they did not know of the available resources explained that they resort to charge nurses or administrative assistants when the need for a language service arises. The fifth question was How confident are you in your ability to provide high quality care to families or patients with LEP with 1 being not at all and 10 being extremely confident, families and patients with LEP receive the same quality of care as English-speaking patients. The mean for the total staff was 6.05. When separated by units, the means were: NICU= 6.14, adult inpatient= 6, pediatric= 5.94, and outpatient adult= 7. When separated by departments, the means were: nursing= 6.55, OT= 5.66, PT= 5.33, SLP= 7, rehab= 5.88, practitioners= 5, and RT=5. This data is outlined in Table 1. Table 1 Needs Assessment Results Total % of Total Importance of Confidence in Handouts (mean) Providing High Quality Care (mean) Total All Staff 20 100% 8.15 6.05 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 19 Unit NICU 11 55% 7.95 6.14 Adult Inpatient 7 35% 8.35 6 Pediatric 8 40% 8.69 5.94 Outpatient Adult 1 5% 10 7 Department Nursing 9 45% 7.55 6.55 OT 3 15% 8.66 5.66 PT 3 15% 9.66 5.33 SLP 2 10% 8.5 7 Rehab Total 8 40% 9 5.88 Physician Total 2 10% 7.5 5 RT 1 5% 9.5 5 The sixth question was What can make the process better? but as I interviewed staff, I expanded the meaning of better to include more efficient, easier, and less time consuming. The staff reported more widely available pre-translated documents (65%, n=13), more widely available interpreters (55%, n=11), better understanding of how to translate specific documents (50%, n=10), better understanding of how to schedule/utilize interpreters, (20%, n = 4), clearer guidelines about language services (10%, n=2), and better communication between team members about using language services in a collaborative manner (5%, n = 1). Staff who reported more widely available translators noted that they sometimes feel rushed when they can only book an interpreter for a short amount of time due to the interpreters busy schedule. Some CULTURALLY COMPETENT CARE IN A LEVEL III NICU 20 rehab staff (n=3) also pointed this out as they tend to not want to take away time from physicians and nurses when the interpreter is only there for a limited time. Staff also reiterated that an easy way to translate documents from their own computer in a variety of languages would be the most helpful issue to fix. During the interviews with staff, three other themes appeared that were not related to the questions. Many staff in the NICU noted that the language barrier is compounded by families with LEP coming in infrequently. Several staff noted that sometimes they feel confident when using an interpreter, it was hard to gauge the effectiveness or quality of care. Third, staff members that knew how to schedule an interpreter (phone or in-person) felt more comfortable with the process and emphasized that knowing that they had the ability to utilize language services made them more confident with their care. After learning that administrative assistants were the common staff to schedule interpreters and have one-on-one interactions with patients with LEP, I informally interviewed 2 administrative assistants in the NICU. Both administrative assistants interviewed gave contradictory feedback. One reported having an appropriate amount of interpreters with no difficulties scheduling, difficulties when parents speak something other than Spanish that they do not have translated resources for, and general satisfaction with the care they provide to patients with LEP. She also noted that her satisfaction comes from the idea that there was only so much they could do about a language barrier and that she trusted she was doing everything she could. The other administrative assistant provided feedback about the difficulty of scheduling interpreters (especially on the weekend), getting caregivers through the intake process by means of one caregiver speaking a sufficient level of English, and the most difficulty and room for improvement with the discharge process. She noted that at discharge, English-speaking CULTURALLY COMPETENT CARE IN A LEVEL III NICU 21 caregivers watch videos, but theres no way for us to show caregiver with LEP those videos as of right now. Creating Resources New Handouts The formal procedures for all interpreting and translation services are five pages long and are dispersed with interpretation guidelines and policy statements. Based on the needs assessment and collaboration with staff, staff would benefit from and be less intimidated by a condensed procedures chart to reference. I created a one-page handout (Appendix C) with the procedure to request and utilize: in-person interpreters, phone interpreters, video interpreters, and translated documents. Staff will be able to reference this sheet for quick access, and there are instructions at the bottom of the page of where to find more details or who to contact for questions. I also created a Guidelines and FAQs (Appendix D) that was condensed to a single page so that it could provide vital information without overwhelming staff. These two handouts used in conjunction will encourage staff to take more initiative when providing care for a patient with LEP. Pre-Translated Documents The primary suggestion that staff hospital-wide had to improve care for patients with LEP was to have more access to pre-translated documents. Due to financial constraints, I was not able to create resources to be translated in various languages. I found 28 pre-translated documents from healthinfotranslations.org and the national Library of Medicine that were relevant to the NICU. I collected handouts on breastfeeding, bathing, circumcisions, general healthcare for newborn babies, safe sleep, general safety, parental support, and infant development. I had two nurses, two rehabilitation specialists, and two lactation consultants CULTURALLY COMPETENT CARE IN A LEVEL III NICU 22 approve the information in English to ensure the information reflected their expertise and the current literature. I sent the documents that were approved by staff to the hospitals translation service to ensure they were translated appropriately in various languages. This process resulted in 16 documents in Arabic, Spanish, Russian, Farci, Chin Hakha, Burmese, and Karen. During my in-person visits to Riley Childrens Hospital and Methodist Hospital to assess their pre-translated documents, I received electronic copies of each pre-translated document at Riley and Methodist. Then, I printed them out and organized them with the other educational handouts. I accumulated 7 handouts from Riley Childrens Hospital and Methodist in Spanish, Chin Hakha, Karen, and Chinese. I also received access to 3 Spanish videos on safe sleep, special deliveries, and breastfeeding that Riley Childrens Hospital uses regularly with Spanishspeaking caregivers. Educating Staff Following the guidelines denoted by AHRQ as outlined above resulted in a 31-slide PowerPoint that all nursing staff and rehabilitation staff in the NICU were required to take within a two-week period. See appendix E to view the module. A total of 22 staff members completed the module prior to the conclusion of this project. The total number of nursing and rehabilitation staff expected to take this module is unknown as I do not have access to staff data. Post-Questionnaire Results Fifteen staff took the quiz at the end of the module. These staff members consisted of nurses (n=14) and therapists (n=1). The mean score for the first question (How confident are you in your ability to provide high quality care to caregivers who speak a language other than English or with cultural values other than your own?) was 8.2. The answers ranged from 7 to 10. This was a 33% increase from NICU staffs previously reported number of 6.14. Staff CULTURALLY COMPETENT CARE IN A LEVEL III NICU 23 reported their confidence with knowing available language services (phrased How confident are you that you know of all of the available language services and that you know how to use them most effectively?) was 9.1 with a range of 8-10. This was an improvement from the 55% of staff that previously reported that they were less than 50% confident with knowing available language services. Collectively, staff left 11 comments about edits to make or points to keep prior to rolling this module out to the rest of the hospital. Four commenters suggested adding more specific ways to increase cultural competence (i.e. specific podcasts, books, etc.). Four commenters noted the helpfulness of the case studies in applying their knowledge, and two commenters suggested adding more specific cultural values of our most common patient demographics. Module Sustainability The feedback from the staff questionnaire was shared with the manager of experience design. She will continue to make edits and make the module more generalizable to the entire hospital. She will submit the edited module in the following months and track progress by evaluating patient care in the months following. Discussion The results from the needs assessment were very telling of the level of communication and general environment across the hospital in regards to language services. One notable result was that staff clearly valued visual education in the form of handouts and written education, yet no staff knew about the two ways to translate vital documents or discharge information. The idea to be able to translate discharge information at the click of a button was overwhelmingly the most suggested tool to increase care for patients with LEP even though that service (albeit with a few extra steps) is available to all staff. This gap in education about language services is itself a CULTURALLY COMPETENT CARE IN A LEVEL III NICU 24 barrier to staff initiating the steps needed to provide high-quality care to their patients with LEP. This barrier held true when one staff member, who made the opposite claim, noted that having easy access to the phone interpreter request line and having experience using it, made her more confident and more likely to take initiative if she had a patient with LEP. This discovery in the results led to the idea for an educational module for this project. It became apparent that staff understood the need for interpretation and translation services and wanted to provide their patients with LEP high quality carethey simply did not know how. I brought this concept up to the staff that I collaborated with throughout the project, and we agreed that this educational module would be most beneficial if it was a required annual module for all hospital staff. Another theme from the needs assessment was that there was a lack of communication and collaboration between team members when providing care for a patient with LEP. Rehab team members reported not being valued equally in the patient education process; nursing staff reported the need for better team communication to maximize time with the patient, and staff as a whole reported relying on certain staff roles (charge nurse and administrative assistant) to schedule interpreters and translate documents. However, even though the administrative assistants were main contributors in utilizing language services, they still gave contradictory information about availability, ease of use, and efficiency of the services. This indicated that they were not on the same page as the team either. The lack of coherence and communication between team members was also a factor I decided to address in the module as quality of care is dependent on how staff members work together. This specific breakdown of communication has not been noted in the literature as a common barrier when attempting to provide culturally competent care. CULTURALLY COMPETENT CARE IN A LEVEL III NICU 25 This lack of communication between team members stems from an overall lack of understanding of each persons role when providing care for patients with LEP. Since a majority of staff reported not knowing all of the available language services and not feeling confident in delivering high quality care to patients with LEP, many staff did not see themselves as an impactful team member for the patient. Again, this lack of self-confidence impedes team members from taking initiative and actively collaborating with other team members. To address staff members confidence and comfortability, the module also consisted of Translation and Interpretation Guidelines. These guidelines educated staff on how to use interpreters to their full ability and the importance of collaborating with team members. There is no previous literature to support the idea of staff empowerment to increase language services use but the findings from the needs assessment and post-questionnaire imply that this may be another small-scale change to make to increase care for patients or caregivers with LEP. This education about the language services procedures was aimed at minimizing the language barrier; however, the language barrier does not exist without a cultural barrier. This idea is evidenced by Ahmed et al.s 2017 systematic review to identify communication barriers between physicians and patients with LEP. Ahmed et al. (2017) found that language barriers were usually compounded by a cultural barrier. Literature clearly supports this idea, yet no staff mentioned a cultural barrier of any degree as a barrier to communicating or providing care for patients with LEP. This absence of cultural considerations does not erase the cultural barrier, it only enhances it. It is not sufficient for healthcare professionals to address the language barrier through interpretation or translation services yet ignore the cultural needs and values of patients. The avoidance of talking about a cultural barrier does not immediately imply that staff actively avoid providing culturally competent care. Healthcare workers are compassionate people with a CULTURALLY COMPETENT CARE IN A LEVEL III NICU 26 wide array of experiences, and most would never aim to ignore a patients culture in the name of providing healthcare services. However, providing healthcare services and providing culturally appropriate healthcare services are different actions with different outcomes. Providing culturally competent healthcare requires staff to be proactive and to constantly examine their own biases and their relationships with their patients. Since most staff were unaware of how to provide culturally competent care in order to meet patients linguistic needs and no staff willingly discussed patients or caregivers cultural or social needs, it is safe to say that staff are not providing culturally competent care for their diverse patient base. These findings affirm what has been noted earlier in studies: healthcare workers are confident in their level of cultural competence awareness even though they can identify their own gaps in practice and the importance of culturally competent care (Shepard et al., 2019) The concept of educating staff to provide culturally competent care has been addressed by AHRQ, JC, AHA, and other large organizations who exist to improve and regulate patient care. Their suggestions for hospitals can seem daunting and implausible, and this alone is another barrier for hospital executives and healthcare workers. Healthcare workers are often left with a defeated attitude when faced with such a large challenge as providing healthcare that meets all patients cultural, linguistic, and social needs. This reality was also confirmed during the needs assessment. However, this attitude is doing both healthcare workers and patients a disservice. In response to the mountain of work needed to be done to ensure culturally competent care, many healthcare workers get lost and end up missing simple improvements that they can make. Instituting an annual, short, and digestible educational module is an example of a solution that is an evidence-supported step in the right direction to providing high quality care for patients with unique cultural, linguistic, and social needs (Renzaho, Romios, Crock, & Sonderlund, 2013). CULTURALLY COMPETENT CARE IN A LEVEL III NICU 27 This doctoral capstone project supports the idea to implement recurring education, as proposed by AHA (2013), AHRQ (2018), HRSA (2020), and JC (2010). Healthcare organizations should embrace small scale changes that support all staffs needs in addition to making large scale, company-wide changes. The results of this project indicate that staff are not only receptive to these small-scale changes, but they are more motivated to be proactive in order to provide culturally competent care. This increased motivation and self-reported improvement in knowledge and comfort immediately following training has been noted in literature. However, there is little known about how cultural competence trainings of this scale create lasting impacts or affect patient care (Jongen, McCalman, & Bainbridge, 2018; Renzaho, Romios, Crock, & Sonderlund, 2013). The limitations of this project were that it was tested in a single unit at IU Health North, and these staffs results cannot be generalized to the rest of the hospital. This module will be edited to be more generalizable to all healthcare workers, instead of being made for NICU staff in the following months. During these edits, changes may be made unintentionally that make this module more or less beneficial. The manager of experience design will continue to monitor the efficacy of the edited module and make appropriate edits. This project was also constrained by time. I was only able to evaluate staff confidence and competence prior to the module and directly after the module. Data about staff self-identified confidence one month, six months, and one year after the module would have been helpful to determine the appropriate amount of time for staff to wait before completing a cultural competence module again. Specifically, within IU Health hospitals, future data should be collected on the efficacy of the edited hospital-wide module, of the module over time, and of the module if it is implemented at other hospitals within the IU Health system. In general, future projects should be aimed at CULTURALLY COMPETENT CARE IN A LEVEL III NICU 28 more small-scale initiatives that can be implemented to meet each hospitals or hospital departments needs. AHA, AHRQ, JC, and HRSA guidelines vaguely suggest recurring cultural competence education, but future studies should be implemented to decide what format, frequency, and level of intensity is most beneficial for staff and patients. As previously mentioned, evidence supports the idea that cultural competence trainings benefits on staffs perceived confidence; however, the impact of these trainings on patient care and patient outcomes is ambiguous (Jongen, McCalman, & Bainbridge, 2018; Renzaho, Romios, Crock, & Sonderlund, 2013). Future research, not limited to IU Health North, should continue to investigate the link between cultural competence trainings, healthcare workers confidence in providing culturally competent care, and patient outcomes. While an increase in culturally competent care is shown to decrease health disparities, it is unknown the impact of staff education as a standalone intervention (AHA, 2013). Conclusion Caregivers and patients with LEP receive varying levels of care that may not meet their unique linguistic, cultural, and social needs. Many healthcare workers are not proactive about providing culturally competent care, unaware of available language services, and unsure of how to efficiently utilize them. These factors limit the quality of care that health care workers can provide for patients with unique linguistic, social, or cultural needs. Overcoming these barriers to providing culturally competent care is a necessary but daunting task that hospitals are continually aiming to do better with. This study, although based in the NICU, supports steps suggested by national healthcare organizations to provide recurring education to staff on cultural competence to reduce health disparities for racial and ethical minority patients or caregivers. CULTURALLY COMPETENT CARE IN A LEVEL III NICU 29 References Agency for Healthcare Research and Quality. (2018, April). 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Journal of Immigrant and Minority Health, 13(2), 309314. doi:10.1007/s10903-010-9355-3 Murphy, J. E., Washington, D., Xuan, Z., Paasche-Orlow, M. K., & Drainoni, M. L. (2019). Identifying and addressing language needs in primary care: A pilot implementation study. Journal of Racial and Ethnic Health Disparities, 6(3), 505516. doi: 10.1007/s40615018-00549-6 Newnham, C. A., Milgrom, J., & Skouteris, H. (2009). Effectiveness of a modified MotherInfant Transaction Program on outcomes for preterm infants from 3 to 24 months of age. Infant Behavior & Development, 32(1), 1726. doi: 10.1016/j.infbeh.2008.09.004 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 34 Nicholls, L., Cunningham-Piergrossi, J., de Sena-Gibertoni, C., & Daniel, M. (2013). Psychoanalytic thinking in occupational therapy: Symbolic, relational, and transformative. Wiley-Blackwell. O'Brien, K., Robson, K., Bracht, M., Cruz, M., Lui, K., Alvaro, R., da Silva, O., Monterrosa, L., Narvey, M., Ng, E., Soraisham, A., Ye, X. Y., Mirea, L., Tarnow-Mordi, W., Lee, S. K., & FICare Study Group and FICare Parent Advisory Board. (2018). Effectiveness of family integrated care in neonatal intensive care units on infant and parent outcomes: A multicentred, multinational, cluster-randomised controlled trial. The Lancet. Child & Adolescent Health, 2(4), 245254. doi: 10.1016/S2352-4642(18)30039-7 Palau, M. A., Meier, M. R., Brinton, J. T., Hwang, S. S., Roosevelt, G. E., & Parker, T. A. (2019). The impact of parental primary language on communication in the neonatal intensive care unit. Journal of Perinatology, 39(2), 307313. doi: 10.1038/s41372-0180295-4 Patient Safety Network. (2019). Cultural Competence and Patient Safety. Retrieved from https://psnet.ahrq.gov/perspective/cultural-competence-and-patient-safety Rahkonen, P., Heinonen, K., Pesonen, A. K., Lano, A., Autti, T., Puosi, R., Huhtala, E., Andersson, S., Metsranta, M., & Rikknen, K. (2014). Mother-child interaction is associated with neurocognitive outcome in extremely low gestational age children. Scandinavian Journal of Psychology, 55(4), 311318. doi: 10.1111/sjop.12133 Renzaho, A., Romios, P., Crock, C., & Sonderlund, A. L. (2013). The effectiveness of cultural competence programs in ethnic minority patient centered health care- a systemic review of the literature. International Journal for Quality in Health Care, 25(3), doi: 10.1093/intqhc/mzt006 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 35 Ross, K., Heiny, E., Conner, S., Spener, P., & Pineda, R. (2018). Occupational therapy, physical therapy and speech-language pathology in the neonatal intensive care unit: Patterns of therapy usage in a level IV NICU. Research in Developmental Disabilities, 64, 108-117. doi: 10.1016/j.ridd.2017.03.009 Rubio-Grillo, M. H. (2019). Performance of an occupational therapist in a neonatal intensive care unit. Colombia Medica (50)1, 30-39. doi: 10.25100/cm.v50i1.2600 Shepard, S. M., Willis-Esqueda, C., Newton, D., Sivasubraminam, D., & Paradies, Y. (2019). The challenge of cultural competence in the workplace: perspectives of healthcare providers. BMC Health Services Research, 19(135) Sigurdson, K., Mitchell, B., Morton, C., Gould, J. B., Lee, H. C., Capdarest-Arest, N., & Profit, J. (2019). Racial/ethnic disparities in neonatal intensive care: A systematic review. Pediatrics, 144(2), 1-22. doi: 10.1542/peds.20183114 Sigurdson, K., Morton, C., Mitchell, B., & Profit, J. (2018). Disparities in NICU quality of care: A qualitative study of family and clinician accounts. Journal of Perinatology, 38(5), 600607. doi: 10.1038/s41372-018-0057-3 Swearingan, C., Simpson, P., Cabacungan, E., & Cohen, S. (2019). Social disparities negatively impact neonatal follow-up clinic attendance of premature infants discharged from the neonatal intensive care unit. Journal of Perinatology, 40, 790-797. doi: 10.1038/s41372020-0659-4 The Joint Commission. (2010). Advancing effective communication, cultural competence, and patient- and Family-Centered Care: A roadmap for hospitals. https://www.jointcommission.org/-/media/tjc/documents/resources/patient-safetytopics/health-equity/aroadmapforhospitalsfinalversion727pdf.pdf CULTURALLY COMPETENT CARE IN A LEVEL III NICU 36 U.S. Census Bureau (2019). Selected Social Characteristics in the United States. Retrieved from https://data.census.gov/cedsci/table?tid=ACSDP5Y2019.DP02&hidePreview=true. Welch, M. G., Firestein, M. R., Austin, J., Hane, A. A., Stark, R. I., Hofer, M. A., Garland, M., Glickstein, S. B., Brunelli, S. A., Ludwig, R. J., & Myers, M. M. (2015). Family nurture intervention in the neonatal intensive care unit improves social-relatedness, attention, and neurodevelopment of preterm infants at 18 months in a randomized controlled trial. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 56(11), 12021211. doi: 10.1111/jcpp.12405 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 37 Appendix A: Needs Assessment Questionanire Unit: O NICU O PICU O Adult inpatient O Peds outpatient O Adult outpatient O Other: Department: O Nursing O OT O PT O Other: What method of communication do you use most often with caregivers / clients? (i.e. discharge communication, HEPs, treatment updates) Providing handouts Hands on demonstrations / in-person Videos Providing books or websites with information Other: How important do you think written/print educational resources are for caregivers / clients? (1= not important at all, 10= extremely important) 1 2 3 4 5 6 7 8 9 10 Whats your process if you provide care for a caregiver / client with limited English proficiency? Do you feel confident that you know what resources are available to you to interpret conversations or translate documents? How confident are you in your ability to provide high quality care for caregivers / clients who speak a language other than English? (1= not confident at all, 10= extremely confident) 1 2 3 4 5 6 7 8 9 10 What would make it easier to provide high quality care for families/caregivers/clients with limited English proficiency? Better understanding of how of how to use interpreters Better understanding of how to translate documents to specific languages More available pre-translated documents More widely available translators Other: CULTURALLY COMPETENT CARE IN A LEVEL III NICU 38 Appendix B: Variation in Needs Assessment and Post-Questionnaire Question in needs assessment 1 2 How confident are you in your ability to provide high quality care for non-English speaking caregivers/patients? Do you feel confident that you know what resources are available to you to interpret conversations or translate documents? Answer option in the postmodule questionnaire Answer option in the needs assessment Question in the postmodule questionnaire Likert scale, 010, 0=not confident at all, 10=extremely confident How confident are you in your ability to provide high quality care to caregivers who speak a language other than English or with cultural values other than your own? Likert scale, 010, 0=not confident at all, 10=extremely confident Open-ended How confident are you that you know of all of the available language services and that you know how to use them most effectively? Likert scale, 010, 0=not confident at all, 10=extremely confident CULTURALLY COMPETENT CARE IN A LEVEL III NICU Appendix C: Language Services Procedures Requesting an in-person interpreter (Spoken language and ASL) (Scheduled and unscheduled) Translating documents (LUNA Language Services) Using a video interpreter Requesting a phone interpreter: 39 Procedure for Requesting Interpreting or Translating Documents: 1. Call LUNA Language Services at 317-341-4137 2. Tell them: Language requested Hospital and department youre calling from (i.e. IU Health North, NICU) Patients name and room number Estimated time needed (date and length of stay) Any special requests (i.e. female interpreter) 3. After the interpreter is used, document in the patient chart in Cerner: Name of Interpreter Language used Arrival and departure time 4. Notes If the patient or family member refuses an interpreter, document that you offered and it was refused Use the time with an interpreter and patient/caregiver to set up another appointment Interpreters are available 24/7, 365 Indications for in-person translation: its needed to meet the needs of the patient, the patient requests one, when youre delivering difficult news, when notarizing legal documents, when providing vital patient information (i.e. discharge/surgical procedures) 1. Check Cerners Patient Education and Patient Education on the Team Portal for any education/information that is already available in the patients preferred language 2. Email IUNorthEDI@LUNA360.com Send the full EDI (signature page included) as a PDF and include: Your name, email address, and telephone number where LUNA can contact you if they have questions The department/unit youre requesting it for The patient name (or caregiver name for a pediatric patient) The patients mailing address Language requested If the patient is already discharged or if they are waiting on the EDI 3. The return rate is usually 24-48 hours (occasionally an extra day for rarer languages) North-specific MARTTI ID numbers: 3494IN00002 & 3494IN00001 1. Retrieve iPad with MARTTI installed from ARC in basement Passcode to unlock is 1234 2. PRIOR to meeting with patient, open MARTTI app, search for language, and start your call 3. Brief interpreter on who theyre going to be speaking to and the nature of the visit BEFORE they speak to the patient or family member 5. Before ending the session, ensure all parties know the session is about to end 6. Document: Name of interpreter (if you got it) Language used That the method of interpretation was MARTTI Call length 7. If the patient or family member refused, document it in the patient chart 1. Call Stratus: 844-979-2487 2. Tell them: Language needed Where youre calling from (IU Health North) Your first and last name, department phone number If the patient is on-site or if you need the operator to dial out CULTURALLY COMPETENT CARE IN A LEVEL III NICU For more information, see Language Services in the Patient Care page section on the Team Portal or contact the Manager of Experience Design at jgravesr@iuhealth.org, 317.688.3440 Policies and Guidelines Updated 06/2021 40 CULTURALLY COMPETENT CARE IN A LEVEL III NICU Appendix D: Language Services Guidelines and Frequently Asked Questions Interpretation FAQs Translation FAQs Guidelines for Use 41 Who pays? The hospital pays- the patient is NEVER responsible for any language service fees. Be sure to make this clear to the patient. Can I schedule interpreters? Do I need to? You can schedule interpreters with the same procedure outlined on the Procedures sheet. Common languages can allow for an interpreter to be ready in anywhere from 30 minutes to a few hours. Rarer languages might allow for an interpreter quickly as well, but you may need to wait upwards of 48 hours. Its up to you and the patient whether you set a time and schedule or if you work with the interpreters schedule. How far out should I schedule an interpreter? A day in advance will be safe for most languages. Rarer languages might require a 2-day notice. Who can and cant interpret? Can: certified medical interpreters Cant: family members. Puts patient and family in awkward situation, medical information might not be interpreted accurately, truth or severity of situation might be withheld Cant: uncertified staff members. Bilingual staff members need to be certified to interpret. This will ensure their language and cultural proficiency is sufficient to interpret medical information accurately Cant: Google Translate. We have no way of knowing how accurate its translating information- especially medical terminology When to use in-person vs. video vs. phone interpreter? In-person: when the patient requests it, when delivering difficult news, during medical procedures or signing legal documents, during discharge Video or phone: emergency triage, routine care, appointment scheduling, expediting care while waiting for in-person interpreter If theres an issue, who do I contact? Contact Manager of Experience Design at (317) 688-3440 or you can contact the operator and ask them to connect you Is there a minimum or maximum amount of time for any of the interpreting services? No, use them for as little or long as you need What if my patient is discharged before I get their EDI translated? The EDI will be sent to their home and youll be emailed a copy What counts as a vital document that can get translated? Any document that would be provided to an English-speaking patient that is considered necessary for the patients health and well-being. Will there be any consequences if the patients do not receive this information? Does the document contain vital and non-vital information? How long until Ill get translated documents back? Common languages: 24-48 hours Rarer languages: 24-72 hours Talk to the patient, not the interpreter Speak in short sentences, allowing the interpreter time to interpret Provide the same information as you would to an English-speaking patient, try not to condense your information too much CULTURALLY COMPETENT CARE IN A LEVEL III NICU Book interpreters for more time than you think youll need to avoid running out of time and condensing vital information. The patient will also be more likely to ask questions if they dont feel rushed. Use the Teach Back Method to ensure patient understanding and accuracy of the interpreter Ask open-ended questions rather than yes/no questions to encourage more communication For more information, see Language Services in the Patient Care page section on the Team Portal or contact the Manager of Experience Design at jgravesr@iuhealth.org, 317.688.3440 Policies and Guidelines Updated 06/2021 42 CULTURALLY COMPETENT CARE IN A LEVEL III NICU Appendix E: Culuturally Competent Care Module 43 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 44 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 45 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 46 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 47 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 48 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 49 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 50 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 51 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 52 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 53 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 54 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 55 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 56 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 57 CULTURALLY COMPETENT CARE IN A LEVEL III NICU 58  ...

... Running head: VOLUNTEER TRAINING PROGRAM 1 / Developing A Volunteer Training Program for Inclusive Service Delivery in Childrens Ministry Kathryn Haskell / A capstone experience 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 advisor: Katie Polo, DHS, OTR, CLT-LANA 2 A VOLUNTEER TRAINING PROGRAM Abstract Children with disabilities and other varying needs often experience barriers to participation in traditional church services. For a small to medium sized church with no special needs ministry, an inclusive childrens ministry and some small adaptations to service delivery can minimize barriers to participation and encourage a sense of community and clear role identity for children. To complete this doctoral capstone experience (DCE), an occupational therapy student (OTS) developed a training program to equip volunteers in the childrens ministry with the knowledge and skills necessary to teach children with varying needs and increase accessibility to the church site and curriculum. Volunteers who participated in a foundational training session reported an increase in confidence, knowledge, and a belief that the training program would make the church service delivery more accessible to all children. Church staff and volunteers will continue to implement the foundational training and other training sessions in the church along with a sensory room to increase participation and accessibility. A VOLUNTEER TRAINING PROGRAM Acknowledgments Faculty mentor: Katie Polo, DHS, OTR, CLT-LANA Site mentor: Tim Gephart Editor: Lori G. Thomas Capstone coordinator: Christine Kroll, OTD, MS, OTR, FAOTA 3 A VOLUNTEER TRAINING PROGRAM Table of Contents Evaluation Chapter I: Introduction Chapter II: Needs Assessment Chapter III: Literature Review and Gap Analysis Statement Interventions Chapter IV: Driving Theory Chapter V: Capstone Plan and Process Chapter VI: Project Implementation Outcomes Chapter VII: Project Evaluation and Results Chapter VIII: Discussion and Impact Chapter IX: Conclusion Appendices 4 A VOLUNTEER TRAINING PROGRAM 5 Chapter I: Introduction Individuals with disabilities experience barriers to participation in occupations within church settings (Hobbs et al., 2016), and parents of children with disabilities can feel that their church does not make accommodations for their children (Baines & Hatton, 2015). Training staff and volunteers could help minimize these barriers to participation (Baggerman et al., 2015) and encourage a warm, inclusive atmosphere that will benefit individuals with disabilities and the community (Griffin et al., 2012). This doctoral capstone experience (DCE) for the University of Indianapolis Occupational Therapy Doctoral program includes developing a program for training volunteers and staff at Hazelwood Christian Church (HCC) on strategies for teaching children with special needs within the current service delivery model in a main classroom setting on Sunday mornings. The purpose of this training program will be to equip HCC staff and volunteers with the knowledge and skills necessary to encourage all church members to engage in full participation in worship services and classroom lessons safely and effectively. Upon an intial needs assessment, it was concluded that the training program could include how to teach children with disabilities effectively and safely, inclusion strategies for children with disabilities, accessibility and sensory integration in the classroom, and how spirituality impacts occupation. The former HCC childrens minister, Kedge Benge, provided some information about what he believed the church needed and what the training program could help address, and the current childrens director, Haley Wolford, agreed with the assessment. The program would address needs of children ages two years to fifth grade with a possibility of expanding to teenagers and adults in the future. There are currently no programs in place to serve children with disabilities specifically, and there are no programs to train volunteers to teach children with disabilities effectively. HCC serves a population of approximately 110 students, including 515 students with disabilities, each A VOLUNTEER TRAINING PROGRAM 6 week. The ministry focus is that all children will have the opportunity to participate in the morning program and hear and learn about Jesus. Chapter II: Needs Assessment Prior to starting the DCE experience, HCC leadership expressed a need for this training program because the volunteers and staff in the church have asked for more training and guidance as they tried to serve individuals with intellectual or physical disabilities. There is a population of children who are a part of the congregation but are unable to fully participate in the childrens ministry due to a lack of structure such as sensory and environmental supports. Their caregivers are also not fully participating in community worship services due to inadequate programming and volunteer training. To identify specific needs, I collected data from stakeholders in the HCC organization including staff, elders (a voted in church leadership board), volunteers in various ministries, and other congregation members. I collected this data via informal interviews, observations, and distributed surveys. Stakeholders confirmed through these interactions that to teach all children in their programming effectively, HCC volunteers would need more training. In informal interviews, HCC staff members indicated that there are families in the community who have children with disabilities or additional needs who have inquired about the childrens ministrys readiness to teach their children. Staff members also said that there is currently no training program in place for childrens ministry (HCC Kids) volunteers. Church leadership expected volunteers to pass a background check and gave them a packet with volunteer expectations to go over on their own. The childrens director, who started working at HCC the same month this project began, indicated a need specifically for training volunteers on safety measures in general as well as specific guidelines for children with additional needs. A VOLUNTEER TRAINING PROGRAM 7 During observations and informal conversation on Sunday mornings, volunteers indicated that there were children participating in the ministry that required more supervision or assistance than they felt comfortable providing due to a lack of knowledge and experience. Volunteers also confirmed that there was no training program in place to help volunteers feel more comfortable teaching children with various needs. Parents of children with disabilities in the congregation had also chosen not to send their children to HCC Kids because HCC provided no reassurance that their children would be safe and well taken care of during church services if their children had needs beyond the typical child. To provide more evidence for the necessity of the training program, 13 volunteers responded to a preliminary survey to gauge their interest and comfort levels regarding learning about inclusive teaching and interacting with children who have disabilities. Results indicated that most volunteers felt that there was a need to train volunteers in inclusive teaching, and most volunteers who responded to the survey were neutral or unprepared to provide sensory strategies or environmental modifications for children who may need them during church programming. Twelve out of 13 volunteers responded that they would be interested in learning more about inclusive teaching, teaching individuals with disabilities, environmental modifications, and sensory strategies. This survey and its results are in Appendix A. It falls within the domain of occupational therapy to provide for the needs of the church organization, including developing a training program for volunteers so they feel equipped to teach children with varying needs and abilities. It would also fall within the domain of occupational therapy to continue to provide consultative services as the church develops a need for a separate special needs ministry. However, to provide a solid foundational beginning to a program, it was determined that a realistic need to meet initially is the development of a basic A VOLUNTEER TRAINING PROGRAM 8 volunteer training that introduces sensory strategies, behavior management strategies, and environmental modifications. This foundational training program would also give volunteers a clearer sense of role identity and reinforce the importance of worship and spirituality as occupations. Chapter III: Literature Review Involvement in activities in the community, as well as active participation in improving personal spirituality and in organized religion, can improve individuals quality of life and overall well-being (Baggerman et al., 2015; Boehm & Carter, 2019a). It is necessary to consider the sacred dimension of family life, as spiritual and cultural activities can greatly influence client factors and guide how families think, act, and make decisions (Boehm & Carter, 2019a, 2019b; Carter & Boehm, 2019). Researchers have found that overall religiosity and spirituality positively impacts the quality of life, and greater strength of faith is associated with higher family quality of life ratings (Boehm & Carter, 2019b). Over one-third of American families attend weekly church services and claim that faith makes a positive difference in their lives (Baines & Hatton, 2015; Liu et al., 2014). Community institutions like the church can provide social participation opportunities, practical assistance for families, and shared connections based on belief systems (Boehm & Carter, 2019a). Faith has relevance for many individuals with disabilities and their families and can help individuals view disability positively, though there is a lack of significant literature about church and other faith-based involvement of individuals with disabilities (Boehm & Carter, 2019a; Carter, 2011; Carter & Boehm, 2019; Liu et al., 2014). Families of individuals with disabilities may be suffering from mental health difficulties due to caregiver burden (Purdhani & Saxena, 2020). In some studies, families have indicated that they need to have emotional and A VOLUNTEER TRAINING PROGRAM 9 informational support from their immediate communities, and it is important for communities to support these families as they experience heightened stress and may have limited knowledge of resources (Boehm & Carter, 2016, 2019b; Gilson et al., 2017; Isa et al., 2016). Parents have reported using faith as a coping strategy for stress caused by caregiver burden, and adults and youth have said that faith communities, prayer, and a spiritual connection within congregations give value to their lives. Spiritual development in children is also thought by some to be central to human development (Baines & Hatton, 2015; Haugen, 2018; Isa et al., 2016; Liu et al., 2014). Many parents hope that their church can provide spiritual support for themselves and their children and guide them as they incorporate spiritual practices such as prayer and devotion into their routines. However, social supports for individuals with disabilities and their families can be hard to identify or lacking in congregations (Boehm & Carter, 2019a; Carter, 2011; Carter & Boehm, 2019). Children and other individuals with disabilities or chronic illnesses are less likely to attend church than individuals without disabilities due to a variety of barriers (Carter & Boehm, 2019; Hobbs et al., 2016; Whitehead, 2018). These children and other individuals with disabilities are a large population and need service, as nearly one in five individuals in the United States are classified as a person with a disability (Carlson, 2016). The Christian church supports the biblical idea that God made all people in His image, and they are infinitely valuable. Still, parents can have trouble finding a faith community that they feel accepts their child with a disability or offers pathways for meaningful participation, and service providers may question how to best serve those families (Carter, 2011; Carter et al., 2016; Harris, 2015; Wright & Owiny, 2016). There are multiple questions that HCC and Christian churches in general are trying to answer as they strive to serve all individuals in the community. Is the broad community A VOLUNTEER TRAINING PROGRAM 10 of the churchs immediate context represented in the congregation (Wright & Owiny, 2016)? How can the church facilitate participation for all individuals (Hobbs et al., 2016)? What barriers are present in the churchs context and environment that may hinder participation? Does the church have the commitment, confidence, and capacity to help individuals with disabilities address their spiritual needs (Carter & Boehm, 2019)? Churches try to break down barriers and allow all individuals to experience full participation in their faith community, yet many community opportunities that meet all peoples needs are still unavailable to individuals with a disability (Carter et al., 2016; Carter et al., 2012). Individuals with varying disabilities experience physical, communicative, and attitudinal barriers when trying to find a church (Finn & Utting, 2017). In general, there is also a lack of understanding of childrens spirituality in the literature, which can become a barrier when developing programming (Harris, 2015). Some common barriers that individuals with disabilities must overcome to participate in church activities are the ability to make friendships, communication that is different than traditional verbal methods, a lack of inclusion, and a lack of volunteers who are adequately prepared to handle the unique needs of individuals with disabilities (Carlson, 2016; Carter et al., 2012; Leigers et al., 2017). One strategy to promote participation in activities in the church is to promote inclusion in ministries, but not all communities are a good fit for individuals with disabilities (Harris, 2015). Inclusion is meaningful when all children are valued members who can actively engage in the community (Harris, 2015). Church members should promote advocacy to help break down these barriers and develop inclusive ministries to facilitate Christian friendships and promote general acceptance and understanding of individuals with disabilities (Finn & Utting, 2017; Hobbs et al., 2016). Churches have reported trying to increase the presence of individuals with disabilities in A VOLUNTEER TRAINING PROGRAM 11 the church, but it is unknown whether this promotes true inclusion rather than merely integration (Carter et al., 2016). It is not enough to simply place all children in a room together; it takes effort to build successful inclusive environments (Harris, 2015). Segregated service delivery can be a barrier as it limits involvement with peers, but inclusion helps individuals gain a sense of belonging, develop friendships, and provide valued roles in the community (Carter et al., 2012; Leigers et al., 2017). Churches can create natural supports within their faith communities to encourage partnership and advocacy for members with disabilities by finding out what the needs are in their community (Carter et al., 2012; Liu et al., 2014). Parents desire inclusive atmospheres for their children that include education and advocacy training for volunteers, the use of universal design, supports in activities that already exist, and development of new opportunities and activities (Carter et al., 2012; Koller, 2016). When creating programming and an inclusive atmosphere, churches should consider collaboration between all stakeholdersincluding parents as advocates, community members, children, and leadership within the church organizationand should provide specific training to these stakeholders (Carter et al., 2012; Finn & Utting, 2017). It is also beneficial to allow children to have a voice in planning by providing input, as their views can encourage connection and participation among peers (Koller, 2016). Parents input is beneficial as they have often previously tested strategies to promote their childrens engagement (Killeen et al., 2019). It is difficult at times for children with and without disabilities to form peer relationships, but children value a spiritual community nonetheless (Harris, 2015; Leigers et al., 2017). Social development is significant and can encourage learning (Knight et al., 2019), which fits with HCCs mission to teach the love of God to children and the desire for all individuals to have A VOLUNTEER TRAINING PROGRAM 12 learning opportunities in the church (Carlson, 2016). Researchers have found that individuals with disabilities and their families have few informal relationships such as friendships, even though these informal relationships may increase social resources, reduce stress, and impact overall well-being (Boehm & Carter, 2016, 2019b). Families are a constant source of care and psychosocial input for individuals with disabilities, but relationships formed outside of families and within congregational contexts are also meaningful (Gilson et al., 2017; Hills et al., 2019; Liu et al., 2014). With training, volunteers can guide peers of children with disabilities to support their friends and improve team knowledge of needs through group collaboration (Leigers et al., 2017). The context in which peer support arrangements and peer networks are implemented must include a team dedicated to the vision of this work, with good communication and a positive perspective (Leigers et al., 2017, p. 77). This type of peer network training is useful in a training program for church volunteers. Churches should ensure effective communication with individuals with disabilities and their families. Parents desire to be well informed about the community experiences their children have, and church programs should provide information in a timely and consistent manner (Gilson et al., 2017). When planning programming, it is important to consider the various needs of parents in order to provide resources and offer multiple forms of information accordingly (Gilson et al., 2017). Church members should also be aware that if an individual cannot communicate verbally, which could impact their participation, they may still value spirituality and have high environmental and spiritual sensitivity (Hills et al., 2019). Volunteering can help foster relationships, develop and refine social skills, and encourage individuals to learn about their strengths and abilities (Manikas et al., 2018). Training for volunteers who may work in inclusive ministries for children with all abilities should include A VOLUNTEER TRAINING PROGRAM 13 information on how to encourage routine, modify activities, and modify the environment to increase participation in religious activities (Baggerman et al., 2015; Killeen et al., 2019). Staf Trainers should encourage volunteers to provide needed support, encourage perseverance, utilize behavior-specific praise, and provide emotional support to help sustain participation (Baggerman et al., 2015; Killeen et al., 2019). Teachers have reported that training that includes workshops and printed materials are beneficial, and literature supports the efficacy of performance feedback, modeling, and coaching as parts of interactive training (Brock & Carter, 2016; Knight et al., 2019). Training should include broad strategies that could apply to many students while also addressing the local needs of the current population (Knight et al., 2019). When training volunteers, organizers should consider the motivation, satisfaction, and perceived role identities of the volunteers (Goldman et al., 2017). Ensuring a clear role identity can help encourage the sustainability of a volunteer base, and researchers have tied volunteer commitment and strong organizational identity with success in organization programs (Goldman et al., 2017; Zollo et al., 2019). Researchers found that churches have been slow to respond to the expressed or unexpressed needs of individuals with disabilities in the past (Whitehead, 2018). Though there are few occupation-based assessments for organizations, a person-centered needs assessment and programming that empowers families can improve service delivery (Romli et al., 2019; Vonneilich et al., 2016). Churches should prepare themselves for serving everyone in the population of their immediate context who wishes to attend (Wright & Owiny, 2016). Children with disabilities and their families can benefit from attending church and participating in volunteering in the community, and churches ministering to all families will discourage isolation while encouraging a sense of belonging (Manikas et al., 2018; Whitehead, 2018; Wright & A VOLUNTEER TRAINING PROGRAM 14 Owiny, 2016). Carter et al. (2016) developed ten dimensions of belonging in faith communities for young people with intellectual and developmental disabilities and their families (p. 132). These dimensions are present, noticed, welcomed, cared for, supported, accepted, known, befriended, needed, and loved (Carter et al., 2016). The church should welcome all families enthusiastically and view all children as valued members with a purposeful role (Carter et al., 2016). Belonging is a complex concept; the needs of children with disabilities are like those of children without disabilities, and it is necessary to prioritize relationships over programming in ministry (Carter et al., 2016; Hills et al., 2019). Attending church can sometimes create negative emotional responses for individuals with disabilities and their families, as views on disabilities vary widely (Carter et al., 2016; Liu et al., 2014; Whitehead, 2018). Christian values include the hope that people see all individuals without stigma. Church members should know to encourage families by reiterating messages of hope, and church leadership should teach that neurodiversity and disabilities are not necessarily diseases to be cured (Boehm & Carter, 2019b; Wright & Owiny, 2016). HCC and other churches are asking how they can encourage the participation of all individuals in the community and reduce stigma, identifying mechanisms of discrimination within the church and addressing them accordingly (Hobbs et al., 2016). Literature supports possibilities for programming and volunteer training in collaboration with outside service systems, such as consultation services with occupational therapy, to equip churches to serve all community members (Carter, 2011). The next step for HCC ministry staff to take to promote a sense of belonging for all members and provide valuable occupational participation was to develop a volunteer training program to equip volunteers to teach any child regardless of ability level or need. Occupational therapists are uniquely qualified to educate others on child development, education strategies, A VOLUNTEER TRAINING PROGRAM 15 sensory needs, environmental modification, and how to maximize occupational participation. The purpose of this project was to develop and institute a training program that will equip HCC staff and volunteers with the knowledge and skills necessary to encourage all church members to engage in full participation in worship services and classroom lessons safely and effectively. Chapter IV: Driving Theory To guide the planning and implementation of this project, I used the Canadian Model of Occupational Performance (CMOP). Through the DCE project, this model provided framework for education and consultation services, which is within the domain of occupational therapy, for the church and target population. This consultation aimed to ensure that all individuals will have the capability of participating in occupations associated with the church fully and in the least restrictive environment. The CMOP incorporates aspects of the person, their environment, and their valued occupations around a centralized spirituality component (Cole & Tufano, 2008). This model is appropriate because all occupational participation in the setting for this DCE project, a nondenominational Christian church, has a spiritual component. This model provides an occupation-based focus to guide planning and implementation within the domain of occupational therapy. Chapter V: Capstone Plan and Process Plan Goals for this project were determined after consulting the literature and conducting an initial needs assessment. Due to a staffing change at HCC in between initial planning stages and the beginning of the project, I adjusted one objective (2A) to fit the needs of the current staff and population. Goals and objectives for this project were as follows: A VOLUNTEER TRAINING PROGRAM 16 Goal 1: HCC staff will demonstrate monthly training modules to childrens ministry volunteers with OTS (occupational therapy student) present before summer 2021. Objective 1A: OTS will develop training modules on integration and teaching strategies for HCC volunteers by March 2021. Objective 1B: HCC staff and volunteers will be able to teach all students regardless of ability confidently after completing training. Goal 2: HCC staff will demonstrate effective use of sensory-friendly classroom materials during services before summer 2021. Objective 2A: OTS will create accommodations/sensory room recommendations for childrens ministry by March 2021. Goal 3: HCC staff will articulate in survey the role of OTS, service delivery model, and importance of inclusion in the church before summer 2021. Objective 3A: OTS will create staff training to ensure HCC leadership understands the role of OTS, goals and objectives of the program, and importance of inclusion in the church by February 2021. Objective 3B: HCC staff and volunteers will be able to articulate the importance of spirituality and worship as an occupation after completing training. Goal 4: HCC staff will articulate the value of occupational therapy services in community organizations by summer 2021. Objective 4A: HCC staff will complete staff training relating to occupational therapy service delivery in community organizations by March 2021. Objective 4B: HCC staff will complete staff training relating to the DCE project and the domain of occupational therapy by February 2021. A VOLUNTEER TRAINING PROGRAM 17 Objective 4C: OTS will complete training modules for HCC staff relating to domain of occupational therapy, theory, and service delivery in community organizations by February 2021. Process There was a 14-week process for developing a volunteer training program at HCC. Due to the nature of the volunteer training program and the churchs previously set yearly budget, printed copies of the training presentation and use of office space were of no cost. I presented the budget for a proposed sensory room and buddy bags to an adjacent ministry team that provides fundraised money to various programs within the church. They will provide the funds to the childrens director when the time comes to implement the sensory room materials. The childrens director wishes to purchase the items necessary for the program over the summer (2021) and plans to implement them in the fall. The volunteer training program consisted of a staff and elder in-service, a foundational training session for volunteers, and provision of plans for future specific training presentations based on the feedback from the foundational training session. I presented the staff and elder inservice training virtually via Zoom at a monthly elders meeting in February 2021. I designed this presentation to inform staff and elders about the volunteer training program plan and process, occupational therapy as a profession, the role of worship as occupation, justification for the project, and how the project fit the delivery model at HCC. The slides used for this training and responses to a post-meeting survey are in Appendix B. The foundational volunteer training was in-person during Sunday morning service hours in March 2021 when most volunteers were available. I held two events with the same training materials at the church to reach more volunteers and to apply any feedback from the first week to A VOLUNTEER TRAINING PROGRAM 18 the next. This training introduced base knowledge about teaching all children in an inclusive environment, including common conditions, behavior management, sensory strategies, and environmental modifications. It also included information on volunteer role identity, the concept of worship and spirituality as occupation, and the mission, vision, and purpose of the childrens ministry at HCC. The presentation slides for the foundational training are in Appendix C. Outlines of future training sessions included a specific behavior management training; CPR and first-aid training (an outside company will host); a training on all materials available in the sensory room; a training on diversity, sensitivity, and microaggressions; and a training on child development for each of the classroom age ranges. The project timeline was as follows: Weeks 12: Orientation o Orient to site o Meet with stakeholders including staff, elders, volunteers, and families in the church o Complete needs assessment o Update literature review o Finalize project goals and objectives Weeks 35: Recruitment and Evaluation o Continue to collaborate with stakeholders o Contact volunteers to participate in volunteer training program o Participate in typical service delivery at the church o Develop and implement staff and elder in-service training o Collect data from staff and elder in-service training A VOLUNTEER TRAINING PROGRAM o Develop first in-person volunteer training program presentation o Continue mentorship from site with weekly meetings Weeks 68: Program Implementation o Implement volunteer training program o Refine and deliver updated volunteer training program o Collect data about program delivery and success level o Meet with site mentor for midterm evaluation o Continue mentorship and collaboration from site Weeks 911: Outcome Measurement o Finalize data collection from all stakeholders o Develop sustainability plan o Compile materials needed for sustainability of the program Develop video version of volunteer training program presentation Finalize budgeted list of items necessary for the program and sensory room Make a list of future training presentations based on feedback from first training data o Meet with ministry team to discuss budget for future program needs o Continue mentorship from site Weeks 1214: Data Analysis and Debriefing o Develop and deliver final presentation to site o Complete data analysis o Deliver all completed materials to site and university 19 A VOLUNTEER TRAINING PROGRAM 20 o Train staff on steps for continued implementation o Meet with site mentor for final evaluation o Debrief stakeholders on outcomes of project and future implications Chapter VI: Project Implementation Volunteers actively serving during 2021 in the HCC Kids programming for ages two years to fifth grade participated in the pilot foundational training program session. I recruited volunteers during the month leading up to the presentation during Sunday morning service delivery. A sign-up station was placed in the church lobby to collect the names and contact information of volunteers so I could contact them to remind them of their upcoming training presentation. I also received a list of current volunteer emails from the childrens director and used this to contact volunteers to prompt them to sign up for a training day. I sent a reminder email two days prior to the training volunteers signed up for and used the HCC Facebook pages to promote the training as well. A total of 36 volunteers engaged in the training program. Thirty-eight volunteers RSVPd, but the final number differed due to various personal reasons. Some individuals who RSVPd did not attend, and some individuals who did not RSVP came to the training as a lastminute sign-up. Volunteers who participated varied in demographic range, including age, gender, and background. Since the church is a community faith-based organization, all volunteers had in common their Christian faith and desire to teach children with various needs about faith in a safe environment. Participation in the volunteer training was not mandatory but highly encouraged by the childrens director. HCC staff provided the physical resources used for the training including the meeting space and paper materials. I used PowerPoint slides with a printed handout accompanying the large screen presentation so volunteers could read at individual speeds during A VOLUNTEER TRAINING PROGRAM 21 the training sessions. I also created a video presentation using VoiceThread for future training sessions and provided this to the church as a part of the dissemination process. I used content from university lectures, various articles, special needs ministry programs, and other virtual and text sources to create the training. A full list of references from the training program is at the end of the training slides in Appendix C. The volunteer training program consisted of a 50-minute foundational presentation to participants. This presentation included information about what the Bible says about disability, definitions, local statistics, purpose of the ministry, inclusion, managing challenging behaviors, safety, common conditions, volunteer comfort levels, sensory regulation, and environmental modifications. The presentation also included information on a Buddy Program and buddy bag system for use during church services, general tips and etiquette for working with children with disabilities, and a list of resources or people to consult if the volunteers had further questions. The Buddy program will include volunteers assigned to a specific child in the ministry that needs a discreet adult to be their friend and help them navigate Sunday morning service delivery. Buddy bags will be available with fidgets, toys, activities, and hygiene products for use when needed during service. The presentation concluded with a focus on volunteer identity and the mission, vision, and purpose of the church and the childrens programming. After the presentation, participants filled out a survey for the childrens director consisting of seven Likert-scale questions about their knowledge relating to the training material and three open-ended questions about takeaways from the training, items they wish we had covered, and additional comments. A copy of this survey and the results are in Appendix D. The childrens director and I chose these questions to gauge volunteer comfort levels with the A VOLUNTEER TRAINING PROGRAM 22 material, to gauge the effectiveness of the training, and to identify any aspects of the training that needed adjusting for future training material. All 36 participants responded to this survey. Volunteers were meant to take the survey developed with the childrens director before and after the training; however, most volunteers only gave their information after the presentation, so I was unable to obtain continuous data that matched before and after. Because of this, I sent an additional survey with five questions via email and text after the training to gauge volunteer confidence and knowledge before and after the presentation. This second survey also included a question about volunteer suggestions for future training presentation material. Twenty-four volunteers responded to this survey. This survey and results are in Appendix E. Chapter VII: Project Evaluation and Results Evaluation To evaluate the effectiveness of the foundational training program, I developed multiple surveys for the volunteers to complete. Using the Goal Attainment Scaling (GAS) as a model, I set goals prior to the program presentation in collaboration with the HCC childrens director. The childrens director chose three goals to focus on, which were: 1. Volunteers will voice an increase in confidence about teaching children who need extra support. 2. Volunteers will voice an increase in knowledge about managing behaviors. 3. The childrens ministry space and programming will be more accessible to all children. The childrens director rated these goals according to importance and difficulty on a scale of 03. She rated the first goal with an importance of three and difficulty of three, the second goal an importance of three and difficulty of two, and the third goal an importance of three and difficulty of three. Based on these goals, I used the five-question survey sent to volunteers after the A VOLUNTEER TRAINING PROGRAM 23 presentation to gauge their confidence and knowledge before and after the training to gain information about program effectiveness in a summative format. Volunteers rated their level of confidence and knowledge using a five-point Likert scale. I also gave volunteers a survey immediately following the foundational training presentation as a formative assessment. This survey measured volunteers confidence, knowledge, and takeaways from the training in the moment, as well as providing an opportunity for questions, concerns, and interest in further training sessions at HCC. This survey also addressed whether volunteers believed that the information and resources presented would increase the accessibility of HCC Kids ministry. Results The childrens director reported that her first goal, for volunteers to indicate an increase in confidence, was met somewhat better than expected (+2) according to GAS scoring. In the summative survey, 45.8% of volunteers indicated they experienced an increase in confidence of at least one point, and 29.2% indicated an increase in confidence of at least two points on a fivepoint Likert scale. Also, 20.8% of volunteers indicated no change in confidence, and one volunteer indicated a decrease in confidence after the presentation. Figure 1 below represents these outcomes from the summative survey. In the formative survey, when asked if the information and resources provided in the training helped to increase volunteers confidence on a scale of one (not at all) to five (very much so), 42.4% of volunteers indicated a five, 39.4% indicated a four, and 18.2% indicated a three on the scale. A VOLUNTEER TRAINING PROGRAM 24 Figure 1 Volunteer Confidence Levels for Teaching Children with Varying Needs The childrens director reported that her second goal, for volunteers to indicate an increase in knowledge, was met much better than expected (+2) according to GAS scoring. In the summative survey, 75% of volunteers indicated an increase in knowledge from before the training to after. The largest number of volunteers, 45.8%, reported a two-point increase on the Likert scale, one person indicated a three-point increase, and 25% indicated a one-point increase in knowledge. Twenty-five percent of volunteers also indicated no change in knowledge relating to behavior management after the training. Figure 2 below represents these outcomes from the summative survey. In the formative survey, when asked if the information and resources provided in the training helped to increase their knowledge of behaviors and behavior management strategies on a scale of one (not at all) to five (very much so), 45.5% of volunteers indicated a five, 36.4% indicated a four, 15.2% indicated a three on the scale, and 3% indicated a two. A VOLUNTEER TRAINING PROGRAM 25 Figure 2 Volunteer Knowledge Levels Regarding Behavior Management The childrens director indicated that we met her goal (0) according to GAS scoring to make the childrens ministry more accessible. I asked volunteers in the formative survey if they believed HCC Kids ministry was accessible for all children and whether they thought that implementing strategies and information from the training would increase the accessibility of HCC Kids. Volunteers indicated mixed responses about whether they believed that the ministry was accessible to all children on a scale of one (not at all) to five (100% accessible). The largest number of 37.1% said three, while 11.4% said two, 25.7% said four, and another 25.7% said five. Figure 3 indicates these results below. A VOLUNTEER TRAINING PROGRAM 26 Figure 3 Belief That HCC Kids Ministry is Accessible to All Children Note. This figure asked the question Do you believe that HCC Kids ministry is accessible for all children? on a five-point Likert scale with one being not at all accessible and five being 100% accessible. When asked if implementing information learned in the training program would increase accessibility for more children on a scale of one (not at all) to five (yes, definitely), the results were more polarized. Most volunteers indicated yes, definitely, with 90.6% of volunteers responding five and 9.4% responding four on the Likert scale. Figure 4 indicates these results below. A VOLUNTEER TRAINING PROGRAM 27 Figure 4 Belief that Implementing Strategies from the Training will Increase HCCs Accessibility Note: This figure asked the question Do you think that implementing strategies and information presented from this training will increase the accessibility of HCC Kids ministry to all/more children? on a five-point Likert scale with one being not at all and five being yes, definitely. In summary, according to the GAS scoring, the program met two goals set by the childrens director much better than expected (+2) and met one general ministry goal as expected (0). The childrens director articulated satisfaction with the foundational volunteer training program as well as satisfaction with the plan for sustainability of the program with the materials provided and future training opportunities. Key stakeholders met goals and objectives developed from the original needs assessment as follows: Goal 1: HCC staff will demonstrate monthly training modules to childrens ministry volunteers with OTS present before summer 2021. Met: The childrens director demonstrated use of video training to OTS in April 2021. Objective 1A: OTS will develop training modules on integration and teaching strategies for HCC volunteers by March 2021. A VOLUNTEER TRAINING PROGRAM 28 Met: I delivered the foundational training to volunteers on the first two Sundays in March 2021. Objective 1B: HCC staff and volunteers will be able to teach all students regardless of ability confidently after completing training. Met: Volunteer confidence increased as evidenced by Figure 1 above. Goal 2: HCC staff will demonstrate effective use of sensory-friendly classroom materials during services before summer 2021. Met: Volunteers began using visual aides in classrooms in May 2021. Objective 2A: OTS will create accommodations/sensory room recommendations for childrens ministry by March 2021. Met: Recommendations were made to the ministry team, and the plan is in place to implement a complete sensory room by August 2021. Goal 3: HCC staff will articulate in survey the role of OTS, service delivery model, and importance of inclusion in the church before summer 2021. Met: HCC staff articulated this knowledge at a staff meeting in January 2021. Objective 3A: OTS will create staff training to ensure HCC leadership understands the role of OTS, goals and objectives of the program, and importance of inclusion in the church by February 2021. Met: Staff training developed in January 2021. Objective 3B: HCC staff and volunteers will be able to articulate the importance of spirituality and worship as an occupation after completing training. A VOLUNTEER TRAINING PROGRAM 29 Met: HCC staff articulated this knowledge at an elders meeting in February 2021, and volunteers articulated this knowledge after the foundational training in March 2021. Goal 4: HCC staff will articulate the value of occupational therapy services in community organizations by summer 2021. Met: HCC staff articulated this knowledge at a staff meeting in January 2021. Objective 4A: HCC staff will complete staff training relating to occupational therapy service delivery in community organizations by March 2021. Met: HCC staff completed this training at an elders meeting in February 2021. Objective 4B: HCC staff will complete staff training relating to the DCE project and the domain of occupational therapy by February 2021. Met: HCC staff completed this training at an elders meeting in February 2021. Objective 4C: OTS will complete training modules for HCC staff relating to domain of occupational therapy, theory, and service delivery in community organizations by February 2021. Met: HCC staff completed this training at an elders meeting in February 2021. Chapter VIII: Discussion and Impact Discussion The purpose of this project was to develop and institute a training program that will equip HCC staff and volunteers with the knowledge and skills necessary to encourage all church members to engage in full participation in worship services and classroom lessons safely and effectively. Volunteers at HCC reported an increase in confidence and knowledge about teaching individuals with varying needs and managing their classrooms during Sunday morning service A VOLUNTEER TRAINING PROGRAM 30 delivery, because of the implementation of a foundational training session and plans for future sessions as part of this program development project. Volunteer confidence and engagement can help a program to succeed. By providing training to volunteers at HCC, the childrens director can expect improved program outcomes and a strong commitment from volunteers to the purpose and vision of the ministry. More children will be able to access and fully participate in worship services due to the volunteer training program material and sensory room consultation. Due to the in-service training designed for leadership, HCC staff and elders are more informed about occupational therapy as a profession, the importance of worship as occupation for their church members, and why occupational therapy consultation can improve their service delivery model. Grasping the importance of worship as occupation is important to HCC leadership as they seek to understand the people that they serve each week. Learning materials from the training program will help increase accessibility and enhance community participation in worship services for children with disabilities who need extra support in the classroom. Impact An increase in volunteer knowledge and confidence has multiple impacts within the church service delivery structure. As volunteers continue to practice using information gained through the training program, more children will be able to participate to the best of their abilities. The childrens director plans to continue using materials provided through this DCE to train new volunteers. I will also continue to attend HCC and help the childrens director develop and deliver more training sessions to volunteers and staff as needs arise. Volunteers have started to use information from the foundational training on Sunday mornings including the use of sensory strategies and visuals in the classrooms. A VOLUNTEER TRAINING PROGRAM 31 Parents feel more comfortable leaving their children with special needs in the childrens ministry services. HCC staff continue to reach out to community members to encourage participation in Sunday morning services. Staff and volunteers also feel more comfortable providing care and service to any individual that wants to participate in the occupation of worship at HCC. The lead minister at HCC expressed gratitude for the program, especially the aspects that address safety and inclusion. The childrens director continues to be enthusiastic about the possibilities of future training material to help volunteers reach more children. All stakeholders reported satisfaction with the results of the DCE project. I gathered volunteer suggestions for additional training sessions to continue the development of a relevant volunteer training program. These suggestions can be found in Appendix E. Occupational therapy consultation in this community organization was beneficial to all stakeholders including HCC leadership, volunteers, and church members. Articulating and demonstrating the importance of full occupational participation was an important part of the DCE process. HCC leadership has requested that I continue to consult with the church as they move forward with further development of the volunteer training program and eventually a special needs ministry. This consultation will also include providing more information from the occupational therapy scope of practice, including universal design for access and occupational participation for all church members rather than specifically for the childrens ministry. Moving forward, I will continue to improve the volunteer training program by updating training resources. I also plan to conduct another needs assessment after the church moves service delivery to one time on Sunday mornings rather than two separate services, as this may impact the population of children attending in the childrens ministry. A VOLUNTEER TRAINING PROGRAM 32 Limitations of this project included the church size and population. HCC has a rural, predominantly white community of individuals who are mostly neurotypical individuals with few diagnosable disabilities. This limits the generalizability of service delivery. Another limitation is that I was a member of the church congregation and married to a staff member at the time of this project. This could have impacted biases when recruiting participants and impacted participant views on the material presented since some of them had a prior relationship with me, the program developer. Chapter IX: Conclusion In conclusion, successful implementation of a volunteer training program at HCC increased volunteer knowledge and confidence. It also provided a way to make the childrens ministry more accessible to any child, regardless of ability or need. HCC leadership gained knowledge about the population they serve and how occupational therapy services are valuable in a community setting. Volunteers gained knowledge of inclusion strategies, sensory integration, environmental modifications, and the importance of a clear role identity. All of these achievements were completed in order to decrease barriers to participation in worship services for children and their families. A VOLUNTEER TRAINING PROGRAM 33 References Baggerman, M. A., Ault, M. J., Collins, B. C., Spriggs, A. D., & Slocum, V. (2015). The effect of coaching on a faith community volunteers use of effective teaching behaviors. 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Childrens spirituality and inclusion: Strengthening a childs spirit with community, resilience, and joy. International Journal of Childrens Spirituality, 20(34), 161177. https://doi.org/10.1080/1364436X.2015.1086728 Haugen, H. M. (2018). It is time for a general comment on childrens spiritual development. International Journal of Childrens Spirituality, 23(3), 306322. https://doi.org/10.1080/1364436X.2018.1487833 Hills, K., Clapton, J., Dorsett, P., & Anderson, K. (2019). Spirituality in the context of nonverbal autism: A research processAnalysis and findings. Journal of Disability & Religion, 23(4), 365386. https://doi.org/10.1080/23312521.2019.1682104 Hobbs, R., Bonham, C. E., & Fogo, J. (2016). Individuals with disabilities: Critical factors that facilitate integration in Christian religious communities. Journal of Rehabilitation, 82(1), 3646. Isa, S. N. I., Ishak, I., Rahman, A. A., Saat, N. Z. M., Din, N. C., Lubis, S. H., & Ismail, M. F. M. (2016). Health and quality of life among the caregivers of children with disabilities: A review of literature. Asian Journal of Psychiatry, 23, 7177. https://doi.org/10.1016/j.ajp.2016.07.007 A VOLUNTEER TRAINING PROGRAM 36 Killeen, H., Shahin, S., Bedell, G. M., & Anaby, D. R. (2019). Supporting the participation of youth with physical disabilities: Parents strategies. British Journal of Occupational Therapy, 82(3), 153161. https://doi.org/10.1177/0308022618808735 Knight, V. F., Huber, H. B., Kuntz, E. M., Carter, E. W., & Juarez, A. P. (2019). Instructional practices, priorities, and preparedness for educating students with autism and intellectual disability. Focus on Autism and Other Developmental Disabilities, 34(1), 314. https://doi.org/10.1177/1088357618755694 Koller, D. (2016). Kids need to talk too: Inclusive practices for childrens healthcare education and participation. Journal of Clinical Nursing, 26, 26572668. https://doi.org/10.1111/jocn.13703 Leigers, K., Kleinart, H. L., & Carter, E. W. (2017). I never truly thought about them having friends: Equipping schools to foster peer relationships. Rural Special Education Quarterly, 36(2), 7383. https://doi.org/10.1177/8756870517707711 Liu, E. X., Carter, E. W., Boehm, T. L., Annandale, N. H., & Taylor, C. E. (2014). In their own words: The place of faith in the lives of young people with autism and intellectual disability. Intellectual and Developmental Disabilities, 52(5), 388404. https://doi.org/10.1352/1934-9556-52.5.388 Manikas, A., Carter, E. W., & Bumble, J. (2018). Inclusive community service among college students with and without intellectual disability: A pilot study. Journal of Postsecondary Education and Disability, 31(3), 225238. Purdhani, S., & Saxena, T. (2020). Spiritual intelligence and emotional competence in parents having children with special needs: A comparative study. IAHRW International Journal of Social Sciences Review, 8(46), 192195. A VOLUNTEER TRAINING PROGRAM 37 Romli, M. H., Yunus, F. W., & Mackenzie, L. (2019). Overview of reviews of standardised occupation-based instruments for use in occupational therapy practice. Australian Occupational Therapy Journal, 66, 428445. https://doi.org/10.1111/1440-1630.12572 Vonneilich, N., Ldecke, D., & Kofahl, C. (2016). The impact of care on family and healthrelated quality of life of parents with chronically ill and disabled children. Disability and Rehabilitation, 38(8), 761767. https://doi.org/10.3109/09638288.2015.1060267 Whitehead, A. L. (2018). Religion and disability: Variation in religious service attendance rates for children with chronic health conditions. Journal for the Scientific Study of Religion, 57(2), 377395. Wright, P. L., & Owiny, R. L. (2016). Special needs goes to church: A special education primer for ministry. Christian Education Journal, 3(13), 85108. Zollo, L., Laudano, M. C., Boccardi, A., & Ciappei, C. (2019). From governance to organizational effectiveness: The role of organizational identity and volunteers commitment. Journal of Management & Governance, 23(1), 111137. https://doi.org/10.1007/s10997-018-9439-3 A VOLUNTEER TRAINING PROGRAM Appendix A Preliminary Volunteer Survey 38 A VOLUNTEER TRAINING PROGRAM 39 A VOLUNTEER TRAINING PROGRAM 40 A VOLUNTEER TRAINING PROGRAM 41 A VOLUNTEER TRAINING PROGRAM 42 A VOLUNTEER TRAINING PROGRAM 43 What kind of training relating to teaching people with disabilities would you like to see at HCC?8 responses Teaching on simple strategies that help us communicate more effectively with children who have any number of disabilities. Introduction and overview, with some practical examples. Information on some additional resources to further education would be good too. Working with Austistic kids. Learning ways to handle behavioral issues (controlling emotions) in children. Finding a way to calm children without disrupting worship time for other kids and without having to call their parents. Examples and demonstrations of what works for different disabilities. How to best interact with kids with disabilities in the kids ministry environment, that also helps them feel welcomed and wanted. Have some activity that simulate some of the disabilities. What accommodations would you like to see made available at HCC?6 responses It would be nice to have the ability to support and minister to families including people with disabilities in a more intentional way to make them more comfortable attending our church, and sharing Jesus love for them. HCC has already been so accommodating towards my Autistic grand daughter. I'd love to share that with other parents/grandparents. sensory friendly toys / activities in each room. They don't just have to be used for those with sensory issues! I dont have much experience communicating with people who have special needs. Therefore I dont have any idea what accommodations would be helpful. A VOLUNTEER TRAINING PROGRAM 44 A buddy program, so kids can still be a part of the whole program but have the one-on-one help is needed. Adding aides to help with more challenging children. Please provide any additional comments you may have relating to inclusive teaching at HCC and serving individuals with disabilities.6 responses Im not sure how great the need is but it may be worthwhile to invest in simple tools such as stress balls, fidget toys, or a few wiggle seats? I'm so excited you're doing this Katie! This will be a blessing to HCC - to the kids and to their parents as well! Thank you! I am on board with receiving instruction on how to better love, communicate with and how to better teach those with special needs about Jesus. I would just say that if we move forward with it, there should be enough training and enough trained volunteers to ensure it is a good experience for all. I realize there may be hiccups along the way, but it should not be the norm. Thank you! Excited to see what we can do to be a place all kids and families are welcomed and excited to be at! Ready to learn right alongside the volunteers! I have had a lot of experience in this area, but need to wait until my vaccination is in affect. A VOLUNTEER TRAINING PROGRAM Appendix B Staff and Elder In-Service Presentation and Survey 45 A VOLUNTEER TRAINING PROGRAM 46 A VOLUNTEER TRAINING PROGRAM 47 A VOLUNTEER TRAINING PROGRAM 48 A VOLUNTEER TRAINING PROGRAM 49 A VOLUNTEER TRAINING PROGRAM 50 A VOLUNTEER TRAINING PROGRAM 51 A VOLUNTEER TRAINING PROGRAM Appendix C Foundational Volunteer Training Presentation 52 A VOLUNTEER TRAINING PROGRAM 53 A VOLUNTEER TRAINING PROGRAM 54 A VOLUNTEER TRAINING PROGRAM 55 A VOLUNTEER TRAINING PROGRAM 56 A VOLUNTEER TRAINING PROGRAM 57 A VOLUNTEER TRAINING PROGRAM 58 A VOLUNTEER TRAINING PROGRAM 59 A VOLUNTEER TRAINING PROGRAM 60 A VOLUNTEER TRAINING PROGRAM 61 A VOLUNTEER TRAINING PROGRAM 62 A VOLUNTEER TRAINING PROGRAM 63 A VOLUNTEER TRAINING PROGRAM 64 A VOLUNTEER TRAINING PROGRAM 65 A VOLUNTEER TRAINING PROGRAM Appendix D Formative Assessment Post-Foundational Volunteer Training 66 A VOLUNTEER TRAINING PROGRAM 67 A VOLUNTEER TRAINING PROGRAM 68 A VOLUNTEER TRAINING PROGRAM 69 A VOLUNTEER TRAINING PROGRAM 70 A VOLUNTEER TRAINING PROGRAM Before the training: What are you looking forward to learning about?23 responses More training Learning what I can do to help more How to interact with some children.. To increase my knowledge about the subject and learn how HCC is going to change to fit other kids also How to work with children of all needs in this ministry How to interact with and help to keep them safe how the program is inclusive and learn how to make church more inclusive about behaviors and how we can help the kiddos what to do and how to handle situations how to work as a partner with the little ones managing disabilities, our resources Helping special needs more sensory room ways to engage children who are "acting out" and how to resonate or decelerate the situation what the "plan" at HCC looks like moving forward how to encourage children with special needs to become well involved with kids around them managing kids with special needs 71 A VOLUNTEER TRAINING PROGRAM 72 I look forward to learning about deescalation how to help kiddos with special needs how we can become better at being there/helping special needs kids be a part of our services how to deescalate physical situations After: What do you wish we had covered?15 responses Did a great job I think you covered everything very well. A little more in depth so we know we can properly handle it. Ideas for diverting behavior. Im not very creative nor have experience with special needs kiddos Good intro, especially the book being read. It gave great examples of how we interact with people with disabilities more often than we know. I think that we have covered everything everything was covered all was covered I thought you did well in covering all areas I thought it was very informative actually practicing or seeing examples (photos) of visuals, equipment Katie covered it all! you did perfect! more on how to deescalate physical situations After: What was your main takeaway from the training?26 responses Need for people training Awareness of special needs Get comfortable, volunteers need to know their limits Giving the child choices. They need a bit more attention than other students. Beginning steps loving people the way they need to be loved while keeping them safe communication and be patient our main mission is to make disciples helping the kids grow in the best way possible for them A VOLUNTEER TRAINING PROGRAM 73 Additional comments, questions, or concerns6 responses Post test. very well presented I have expereince with special needs kids as a peds nurse and NP. I think this is great learning and think it will increase people's comfort level. I'm happy that we mainstream our special needs kids and seek inclusivity. Please don't separate them. great information, like the 1:1 approach to help maintain class as a whole and be aware of needs of students who need extra attention text on powerpoint needs to be bigger Please indicate your interest here in being on the "buddy" list. Also, if you are not currently serving, please write your contact info here as well as the areas in which you are interested in serving. Thanks for coming!12 responses I am interested Interested! I love children, I plan of having a career with children and this is a great opportunity for me to get a head start. I am interested but need much more info. However, I am currently serving in Kidstown not at the moment but maybe in the future A VOLUNTEER TRAINING PROGRAM I am interested in serving those who God made unique I am interested in being a buddy Absolutely willing to help any way I can. At this time I am not interested in being on the "buddy" list because I don't feel I can make the time commitment I cannot be a buddy currently but I would like. to possibly consider it in the summer interested but I dont think I can at this time 74 A VOLUNTEER TRAINING PROGRAM Appendix E Summative Assessment Post-Foundational Volunteer Training 75 A VOLUNTEER TRAINING PROGRAM 76 What is another topic that you would like added to the HCC Kids volunteer training program? Or, what is a topic you would like to learn about more in-depth in the HCC Kids volunteer training program?10 responses what to do if you dont understand what a nonverbal child needs lesson adaptation for special needs I think just more ways we can apply the training. Maybe some real world examples or scenarios to facilitate more discussion in how to help those kiddos feel more comfortable and love them well. in depth knowledge about how to be a good buddy for special needs children I think it would be great for all volunteers to get basic age information about development, reasoning, discipline, and engaging groups of children of certain age groups. Especially for the amazing high school kiddos thats help. I have seen varying comfort levels when engaging the children. the toddlers used to (back when my kids were that age) had a structured time for singing and lessons. It obviously wasnt too deep but they had something and a video. Right now we are just baby sitting the toddlers. Kim Ranson was the person who set it up. She would be a great resource for this. health/non-health/behavioral emergency situation protocols I want to learn more about the needs and structures of sensory spaces for kids and students who need it whatever we need to make the children's ministry more available, safe and welcoming to all kids with all backgrounds is what we should focus on learning/being aware of resources we will have at hcc, including room, goodie bag, specific people  ...

... Use of Focus on Therapeutic Outcomes (FOTO) by Occupational Therapists in Upper Extremity Rehabilitation: Is it Valuable? Avoy Dresden Glover, Jacqueline Gunther, Patia Hunt, Anna Morrisey, & Elizabeth Siegfried December 17, 2021 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: Erin K. Peterson, DHSc, OTR, CHT A Research Project Entitled Use of Focus on Therapeutic Outcomes (FOTO) by Occupational Therapists in Upper Extremity Rehabilitation: Is it Valuable? 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: Avoy Dresden Glover, Jacqueline Gunther, Patia Hunt, Anna Morrisey, & Elizabeth Siegfried Doctor of Occupational Therapy Students Approved by: Research Advisor 12/15/21 Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date FOTO BY OT IN UE REHAB Abstract Occupational therapy practitioners treating patients with UE conditions use various patient-reported outcome measures to evaluate patients function throughout care. FOTO for the UE has limited research to support its use in OT, yet CMS endorses FOTO as a means to measure value-based reimbursement. The purpose of this study was to further explore the utility of FOTO as a functional outcome measure used with patients with orthopedic UE injuries receiving OT services. Using a multiple regression model, researchers found that FOTO intake score, duration of therapy, and injury location were significant predictors of FOTO discharge scores. The number of visits was not a significant predictor. An ANCOVA determined a statistically significant difference in discharge scores among injury locations when controlling for FOTO intake scores. Researchers performed a post hoc analysis with a Bonferroni adjustment showing only one statistically significant mean difference between wrist and hand, indicating that patients with hand injuries tend to have more dysfunction at therapy discharge than wrist injuries. While FOTO does have some advantages as a valid and reliable tool for patients with UE injuries, continued research is indicated to further define the utility of FOTO by OT practitioners. FOTO BY OT IN UE REHAB Use of Focus on Therapeutic Outcomes (FOTO) by Occupational Therapists in Upper Extremity Rehabilitation: Is it Valuable? The Centers for Medicare and Medicaid Services (CMS) shifted the health care system from fee-for-service reimbursement to value-based reimbursement so that health outcomes and patient satisfaction ratings can determine reimbursement amounts (Leland et al., 2014). Physical therapy (PT) practitioners commonly use Focus On Therapeutic Outcomes (FOTO) as an outcome measure to assess a patients functional status throughout rehabilitation following an orthopedic or neurological injury (Colorado Physical Therapy Network, n.d.; Pitchbook, n.d.). Researchers employed by FOTO claimed it is a reliable and valid tool to assess functional impairment following upper extremity (UE) orthopedic conditions and injuries (Chesworth et al., 2014; Hart, 2001). However, researchers noticed gaps in the literature regarding the use of FOTO for patients with UE orthopedic conditions receiving therapy from occupational therapy (OT) practitioners. The purpose of this study is to further explore the utility of FOTO as a functional outcome measure for this patient demographic. Literature Review OT for UE Musculoskeletal Injuries OT is a health care profession that applies a holistic and patient-centered approach when evaluating and treating patients (American Occupational Therapy Association [AOTA], 2020). OT practitioners help people perform their meaningful and purposeful occupations across the lifespan and often treat patients following an orthopedic injury of the UE (AOTA, 2020). UE orthopedic conditions vary in complexity and recovery time. OT practitioners treat patients for many UE injuries, including carpal tunnel syndrome, cubital tunnel syndrome, trapeziometacarpal arthritis, trigger finger, DeQuervains tenosynovitis, Dupuytrens contracture, FOTO BY OT IN UE REHAB ganglion cyst, rotator cuff tendinopathy, shoulder osteoarthritis, adhesive capsulitis, and brachial plexus injury (Beleckas et al., 2018; Kennedy et al., 2010; Yannascoli et al., 2018). These types of disorders and injuries often cause "pain, decreased strength, and restricted range of motion that limit participation in meaningful occupational activities'' (Marik & Roll, 2017, p. 1). Typically, an OT practitioner determines specific interventions (i.e., exercises that strengthen and stretch muscles, joint mobilization techniques, use of orthotics, and home adaptations) based on the severity and complexity of the injury location to increase their patients quality of life (Marik & Roll, 2017; Stonner et al., 2017). OT practitioners must also consider intervention charges based on reimbursement policies and procedures outlined by CMS. CMS and Value-Based Reimbursement The goals of value-based reimbursement are to improve health outcomes, enhance patient satisfaction, and reduce the costs of health care (Leland et al., 2014). CMS initiated the Quality Payment Program (QPP) and the Merit-Based Incentive Payment System to reform reimbursement procedures and amounts dispensed to Medicare B providers (QPP, 2019). As of 2019, OT practitioners who treat Medicare B beneficiaries and meet other specific inclusion criteria are required to report data in several categories per the QPP, one of which is quality measures (QPP, 2019). To satisfy reporting requirements for quality, practitioners must measure patients functional change scores using appropriate outcome tools (QPP, 2019). CMS accepts a variety of tools to measure the quality of services but currently endorses FOTO as its preferred outcome measure because it provides risk-adjusted scores for patients self-perceived functional status throughout a therapy episode of care (Castleberry, 2015; Colorado Physical Therapy Network, n.d.; Department of Health and Human Services, 2012; FOTO Inc., 2017; QPP, 2019). FOTO BY OT IN UE REHAB FOTO History and Development FOTO serves as both a repository of functional status outcome measures and a database that allows for collecting and analyzing scores (Colorado Physical Therapy Network, n.d.). In 1992, three PT practitioners created FOTO as an outcome measure to assess patients who sustained injuries of the lower extremity (LE) (Pitchbook, n.d.). In addition to their existing LE measures, FOTO Inc. more recently created a Shoulder Functional Status measure and the Elbow, Wrist, Hand Functional Status 10-Item Short Form (EWHFS) specifically for patients with conditions or injuries of the UE (FOTO Inc., 2018; M. Werneke, personal communication, October 20, 2020). All FOTO surveys are available in paper format; however, the creators prefer administration to be performed through the more innovative Computer Adaptive Testing (CAT) method (Crane et al., 2006). Paper Surveys vs. CAT Researchers deemed the CAT format to improve the precision and efficiency of data collection and utilization (Hart, Wang, et al., 2010). Using the CAT delivery method through the online portal, FOTO delivers questions relevant to a specific injury location concerning the patients self-perceived difficulty completing tasks (Hart, Deutscher, et al., 2010). The computer algorithm presents varying types and numbers of questions based on the client's answer for the previous question (Hart, Deutscher, et al., 2010). According to Horner (2019), programmers and developers built the CAT versions for individualization, ease, and timeliness, taking approximately one to two minutes. Comparatively, the paper-and-pencil version of FOTO required every question to be answered and took five to ten minutes to complete (Horner, 2019). Wang et al. (2019) cautioned about the possibility of the FOTO CAT prematurely terminating FOTO BY OT IN UE REHAB the assessment or asking irrelevant items, which could increase the testing burden. Likely for proprietary reasons, it is unknown how the FOTO CAT determines when it has sufficient information and ends the assessment (M. Werneke, personal communication, October 20, 2020). Similarly, FOTO CAT has an unknown number of questions in its test bank, and is difficult to achieve a perfect score on the assessment (M. Werneke, personal communication, October 20, 2020). Comparing FOTO to other UE Questionnaires FOTO developers derived the questions used on the EWHFS from the Disabilities of the Arm, Shoulder, and Hand (DASH) questionnaire and the Upper Extremity Functional Index (UEFI-20), two outcome measures commonly used in UE rehabilitation (FOTO Inc., 2018). The DASH questionnaire, which demonstrates good validity and strong reliability, measures symptoms and level of impairment for those with musculoskeletal disorders of the UE (Franchignoni et al., 2014; Gummesson et al., 2003; Kennedy et al., 2011; Kitis et al., 2009; Raven et al., 2008). The questionnaire contains 30 items and detects changes in disability over time (Case-Smith, 2003; Gummesson et al., 2003). The assessment includes questions regarding how difficult functional tasks have been for the patient over the past week and the rating of severity of pain, tingling, weakness, and stiffness (Institute for Work and Health, 2006). The UEFI-20 operates similarly to the DASH as it asks patients to rate their abilities with tying or lacing shoes and opening a jar (Hamilton & Chesworth, 2013, p. 1513), and it is also valid and reliable in measuring UE function (Chesworth et al., 2014). The DASH and the UEFI-20 questionnaires provide information regarding a patients functional status following an injury to the UE; however, it is unknown if validity, reliability, FOTO BY OT IN UE REHAB and responsiveness remain sound when these tools are modified or shortened or dissected to create the FOTO CAT or EWHFS. Psychometric Properties Researchers employed by FOTO claimed the validity and reliability of FOTO and FOTO CAT in assessing impairment following UE injuries (Hart, 2001; Hart, Deutscher, et al., 2010); however, gaps exist in the literature regarding FOTOs value to OT practitioners working in UE rehabilitation (Hart et al., 2001). Moreover, FOTO CAT continuously undergoes modifications to its questions in all the different UE body segment surveys (shoulder, upper arm, elbow, forearm, wrist, and hand) (M. Werneke, personal communication, October 20, 2020). Limited research exists on the psychometric properties of EWHFS and FOTO CAT specifically for UE conditions (Hart & Connolly, 2006). Additionally, there is a lack of research conducted by those not affiliated with FOTO to support these claims (Hart, 2001; Hart et al., 2001). Purpose Overall, gaps remain in the literature regarding FOTOs value to OT practitioners working in UE rehabilitation. Therefore, the purpose of this study was to further explore the utility of the FOTO CAT as a functional outcome measure used with patients with orthopedic UE injuries receiving OT services. Specifically, researchers aimed to answer the following questions: 1. Does injury location (shoulder/upper arm, elbow/forearm, wrist/hand), FOTO intake score, the total number of visits, and therapy duration in days predict FOTO discharge scores? 2. Are there differences in FOTO discharge scores among shoulder, upper arm, elbow, forearm, wrist, and hand injury locations when controlling for FOTO intake score? FOTO BY OT IN UE REHAB Methodology Procedures After receiving permission from hospital leadership and exempt study approval by the University of Indianapolis Human Research Protections Program, researchers used a quantitative, cross-sectional study design to investigate the utility of FOTO in measuring the functional status of patients with orthopedic UE injuries receiving OT services. Researchers analyzed retrospective data from patients treated between November 2017 through March 2019 at a large hospital-based outpatient therapy department in the Midwest. Data used in the study were previously collected for normal operating procedures at the facility for management, marketing, and reimbursement; therefore, no participants were recruited, screened, or randomized, so informed consent was not necessary to obtain. Researchers hypothesized that the following factors would predict FOTO discharge scores following provision of OT services: injury location, FOTO intake score, the total number of visits, and treatment duration. Researchers anticipated that discharge scores would vary based on injury location when intake scores are held constant for the second hypothesis. Participants and Data Collection Participants of the study previously received outpatient OT services for hand, wrist, forearm, elbow, shoulder, or upper arm conditions. Participants were 18 years or older and completed FOTO at therapy evaluation and discharge to meet inclusion criteria. Exclusion criteria consisted of patients not seen by OT hand therapists or those who did not have an orthopedic impairment of their hand, wrist, forearm, elbow, shoulder, or upper arm. To maintain patient and clinician privacy, a qualified hospital employee, not associated with the research FOTO BY OT IN UE REHAB team collected data from the FOTO database and provided de-identified data to researchers for analysis. Instrument FOTO CAT was used to measure a patients functional change from their therapy evaluation to discharge. Before meeting their therapist, patients completed the initial FOTO CAT on a tablet in the waiting area. Therapists verbally administered patients the FOTO discharge survey on the final day of the therapy session using either a tablet or computer, depending on the clinic set-up. Data Analysis Researchers received data from 1,259 total participants. Upon preliminary analysis of the data, researchers removed 41.9% (n = 528) of participants who had incomplete FOTO intake or discharge scores. Additionally, researchers excluded 2.9% (n = 37) of participants who had a non-orthopedic injury. Therefore, researchers analyzed a total of 694 participants and conducted the preliminary analysis multiple times to ensure the accuracy of the final data. Results Researchers used SPSS Version 23.0.0.0 for data analysis and first calculated the FOTO functional change score for each participant by calculating the difference between the discharge and intake scores. Of the participants, 92.2% (n = 640) experienced an improvement from evaluation to discharge, 1.7% (n = 12) exhibited no change, and 6% (n = 42) demonstrated negative FOTO change scores as their functional status worsened over the course of therapy. Participants were grouped according to injury location, which determined the FOTO CAT version they received (Table 1). FOTO BY OT IN UE REHAB Table 1 Participants Injury Location Participants (n) Shoulder 56 Upper Arm 23 Elbow 94 Forearm 15 Wrist 235 Hand 271 Next, researchers ran a multiple regression to determine if FOTO discharge scores were predicted from patients FOTO intake score, duration of therapy in days, number of therapy visits, and UE injury location. There was linearity as assessed by partial regression plots and a plot of studentized residuals against the predicted values. There was independence of residuals, as assessed by a Durbin-Watson statistic of 1.902. There was homoscedasticity, as assessed by visual inspection of a plot of studentized residuals versus unstandardized predicted values. There was no evidence of multicollinearity, as assessed by tolerance values greater than 0.1. There were seven studentized deleted residuals greater than 3 standard deviations; however, these were kept in the analysis as none resulted from incorrect data. There were no leverage values greater than 0.2 and no values for Cook's distance above 1. The assumption of normality was met, as assessed by a Q-Q Plot. FOTO intake score, duration of therapy, and injury location were significant predictors of FOTO discharge scores, F(5, 688) = 18.002, p < .001 (Table 2). The number of visits was not a significant predictor of discharge scores. The overall model fit was R2 = .109. FOTO BY OT IN UE REHAB Table 2 Multiple Regression Model FOTO Discharge Score B SE B p R2 Adjusted R2 .00 .11 .12 95% CI for B LL UL (Constant) 51.80 46.75 56.84 2.57 Middle Arm -1.66 -5.53 2.21 1.97 -0.04 .40 Lower Arm -0.63 -3.80 2.54 1.62 -.02 .69 FOTO Intake Score 0.31 .25 .38 .04 0.37 .00* Duration 0.06 .01 .09 .02 0.14 .01* -.25 .16 .10 -0.03 .64 Number of Visits -0.05 Note. B = Model = Enter method in SPSS Statistics; B = unstandardized regression coefficient; CI = confidence interval; LL = lower limit; UL = upper limit; SE B = standard error of the coefficient; = standardized coefficient; R2 = coefficient of determination; R2 = adjusted R2 *p < .05. **p < .001. Researchers then performed an ANCOVA to determine if differences were present in FOTO discharge scores among injury locations (shoulder, upper arm, elbow, forearm, wrist, and hand) when controlling for FOTO intake scores. There was a linear relationship between FOTO intake scores and FOTO discharge scores for each injury location, as assessed by visual inspection of a scatter plot. There was homogeneity of regression slopes as the interaction term was not statistically significant F(5, 682) = 0.967, p = 0.437. Standardized residuals for the overall model were all normally distributed except for the wrist, as assessed by Shapiro-Wilk's test, p > .05 (Table 3). There was homoscedasticity and homogeneity of variances, as assessed by visual inspection of a scatter plot and Levenes test of homogeneity of variances, p = .323. There were five outliers with standardized residuals greater than 3 standard deviations; these outliers FOTO BY OT IN UE REHAB were included in the analysis as they did not skew the data distribution. After adjusting for FOTO intake score, there was a statistically significant difference in FOTO discharge scores among injury locations (Table 4), F(5, 687) = 2.720, p = 0.019, 2 = 0.019. Post hoc analysis was performed with a Bonferroni adjustment, showing one statistically significant mean difference between wrist and hand (Table 5). Table 3 Test of Normality as assessed by Shapiro-Wilk Body Segments p-value Shoulder .084 Upper Arm .078 Forearm .306 Wrist .005 Hand .196 Note. Standardized Residual for FOTO discharge scores FOTO BY OT IN UE REHAB Table 4 ANCOVA Injury Location Participants (n) Unadjusted Adjusted M SD M SD Shoulder 56 65.32 12.25 68.57 1.76 Upper Arm 23 68.74 13.09 68.96 2.68 Elbow 94 68.38 14.78 66.97 1.34 Forearm 15 73.07 8.66 72.88 3.32 Wrist 235 65.59 13.98 65.95 0.84 Hand 271 70.18 13.1 69.68 0.78 Note. N = number of participants, M = Mean, SD = Standard Deviation, SE = Standard Error Table 5 Post Hoc with Bonferroni Adjustment Body Segment Hand Body Segment Estimated SE 95% CI Mean Difference LL UL pValue Shoulder 1.11 1.94 -4.60 6.82 1.00 Upper Arm 0.72 2.79 -7.51 8.94 1.00 Elbow 2.71 1.54 -1.83 7.25 1.00 Forearm -3.20 3.41 -13.24 6.85 1.00 Wrist 3.73* 1.15 .343 7.12 .019 Note. *The mean difference is significance at the .05 level, adjustments for multiple comparisons: Bonferroni, SE = Standard Error; LL = lower limit; UL = upper limit; R2 = coefficient of determination; R2 = adjusted R2 *p < .05. **p < .001 FOTO BY OT IN UE REHAB Discussion FOTO Can Predict Functional Outcomes Researchers determined through a multiple regression that FOTO discharge scores are influenced by FOTO intake score, injury location, and duration of therapy in days for patients with UE conditions receiving outpatient OT. Results illustrated that the number of therapy visits was not a statistically significant variable in predicting FOTO discharge scores; however, early FOTO researchers studied similar factors and found each to be significant toward the patients functional outcome (Hart et al., 2001). Our findings coincide with results from more recent studies concluding that the number of therapy visits or length of rehabilitation are not factors influencing function at discharge (Clewley et al., 2020; Cogan et al., 2020). Further research is needed to determine how influential the number of therapy visits or length of rehabilitation is on functional outcomes at discharge. Functional Differences Following Hand and Wrist Injuries When controlling for FOTO intake scores, researchers compared the differences in FOTO discharge scores among injury locations (shoulder, upper arm, elbow, forearm, wrist, and hand). The only statistically significant difference in FOTO discharge scores among injury locations existed between patients with hand injuries and those with wrist injuries. Participants with hand injuries experienced worse functional outcomes than those with wrist injuries. Researchers speculate that this difference may result from the hand consisting of more intricate anatomical structures compared to the wrist and the hand being more integral to function. When limited in wrist and forearm motion, many patients compensated with elbow, shoulder, or trunk motions (Carey, 2008; Pereira et al., 2012), whereas it is more difficult to compensate with a hand injury. FOTO BY OT IN UE REHAB Other researchers provided different explanations for significant differences in function among injury location groups. Carlisle et al. (2008) declared football players with elbow injuries often returned to play quicker than players with forearm and wrist injuries. Additionally, De Putter et al. (2014) stated distal UE injuries frequently healed quicker with better health-related quality of life outcomes than proximal UE injuries. Lastly, Jayakumar et al. (2018) broadened the perspective on functional determinants by stating, psychologic and social factors were more consistently associated with disability than factors related to impairment (p. 2207-2212). Continued research is necessary to better understand the exact nature and cause of functional differences among injury locations. Implications for Practice Although FOTO was the first measure endorsed by CMS (Castleberry, 2015), uncertainty remains regarding the use of FOTO by OT practitioners. For example, much of the research regarding FOTOs utility and psychometric properties was conducted by FOTO Inc. employees and not verified by external researchers. Specifically, Dr. Dennis Hart, the former Director of Research at FOTO Inc., was involved in over 100 peer-reviewed articles supporting FOTOs use and effectiveness (FOTO Team, 2013). If OT practitioners use FOTO to receive reimbursement for services, then clinicians must be certain of its psychometric properties. As previously mentioned, FOTO appropriated several questions from the more popular and better validated DASH. The QuickDASH, a shorter assessment derived from the DASH, uses similar questions, as well (Kennedy et al., 2011, p. 165). When reviewing these tools, we noticed seven out of the ten questions on the FOTO Paper Short Form used similar verbiage and question format as the DASH. Furthermore, questions asked in the FOTO CAT are not always relevant or clear. For example, one question asks that the participant rate their ability to manage FOTO BY OT IN UE REHAB transportation needs (FOTO Patient Outcomes, 2021). This question is vague and may confuse clients, leading to possible concerns of validity. Along with unclear questions, pain is not assessed on the EWHSF paper form and is not routinely assessed through the FOTO CAT outcome measures (FOTO Inc., 2018). Pain has a significant impact on a patients functional outcome, and CMS considers it a key measure in determining the value and benefit of care (QPP, 2019). Patients who have pain throughout therapy showed slower progress toward recovery, leading to an increased number of visits and higher health care costs (Cogan et al., 2020). The DASH and QuickDASH both include questions about pain and are free to use (Case-Smith, 2003; Gummeson et al., 2003). It is the authors' opinion that CMS should consider including other, and perhaps more valid, reliable, and useful, outcome measures to satisfy reporting requirements for reimbursement. Limitations One limitation of this study involved the potential for inaccurate data entry. At this facility, non-medical personnel entered patient information and selected an injury location in the FOTO database using the referring diagnosis on the order for OT. If the wrong injury location was selected, then the patient was provided the incorrect FOTO CAT assessment. For example, staff unfamiliar with medical terminology may have registered a patient with a radial head fracture under the wrist injury location, when selecting the elbow injury location would have been more accurate. This may have led to skewed results if patients did not complete the proper assessment. Future Research Researchers do support the use of FOTO for orthopedic conditions of the LE and utilization in the field of PT (Colorado Physical Therapy Network, n.d.; FOTO, n.d.); however, FOTO BY OT IN UE REHAB we suggest the need for increased evidence supporting the validity and reliability of the FOTO CAT and EWHFS for use with UE conditions. Additional evidence is needed to better establish and support the use of FOTO over other outcome measures in efficiency and practicality in OT practice. We recommend that future researchers address the accessibility and administration of the FOTO questionnaire to evaluate potential barriers to the clients understanding of the questions. Questions should be specific and clear to enhance accurate reports. Finally, our findings demonstrated significant differences only between wrist and hand functional outcomes, yet multiple studies mentioned previously suggested the impact of other factors on function depending on injury location. Ongoing research efforts should consider these topics to clarify the use of FOTO CAT by OT practitioners treating UE conditions. Conclusion Researchers investigated the utility of the FOTO CAT as a functional outcome measure for patients with orthopedic UE injuries receiving OT services. FOTO can be a useful outcome measure; however, researchers outlined concerns about its use instead of other, better-suited measures for UE conditions and OT practice. Until the literature more adequately supports the use of FOTO in OT, CMS should consider endorsing other outcome measures that have wellestablished psychometric properties determined by external researchers to better influence accurate reimbursement amounts. FOTO BY OT IN UE REHAB References American Occupational Therapy Association [AOTA]. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy. Beleckas, C., Wright, M., Prather, H., Chamberlain, A., Guattery, J., & Calfee, R. (2018). Relative prevalence of anxiety and depression in patients with upper extremity conditions. The Journal of Hand Surgery, 43(6), 1-571. https://doi.org/10.1016/j.jhsa.2017.12.006 Carey, S. L., Highsmith, J. M., Maitland, M. E., & Dubey, R. V. (2008). Compensatory movements of transradial prosthesis users during common tasks. Clinical Biomechanics, 23(9), 11281135. https://doi.org/10.1016/j.clinbiomech.2008.05.008 Carlisle, J. C., Goldfarb, C. A., Mall, N., Powell, J. W., & Matava, M. J. (2008). Upper extremity injuries in the national football league: Part II: Elbow, forearm, and wrist injuries. The American Journal of Sports Medicine, 36(10). https://doi.org/10.1177%2F0363546508318198 Case-Smith, J. (2003). Outcomes in hand rehabilitation using occupational therapy services. The American Journal of Occupational Therapy, 57, 499506. https://doi.org/10.5014/ajot.57.5.499 Castleberry, L. (2015, October 20). National Quality Forum (NQF) endorses Focus on Therapeutic Outcomes (FOTO) measurement system. Cision PRweb. http://www.prweb.com/releases/2015/10/prweb13022475.htm Chesworth, B. M., Hamilton, C. B., Walton, D. M., Benoit, M., Blake, T. A., Bredy, H., Burns, C., Chan, L., Frey, E., Gillies, G., Gravelle T., Ho, R., Holmes, R., Lavallee, R. L. J., MacKinnon, M., Merchant, A. J., Sherman, T., Spears, K., & Yardley, D. (2014). FOTO BY OT IN UE REHAB Reliability and validity of two versions of the Upper Extremity Functional Index. Physiotherapy Canada, 66(3), 243253. https://doi.org/10.3138/ptc.2013-45 Clewley, D., Iftikhar, Y., Horn, M. E., & Rhon, D. L. (2020). Do the number of visits and the cost of musculoskeletal care improve outcomes? More may not be better. Journal of Orthopaedic & Sports Physical Therapy, 50(11), 642-648. Cogan, A. M., Weaver, J. A., Ganz, D. A., Davidson, L., Cole, K. R., & Mallinson, T. (2020). Association of therapy time per day with functional outcomes and rate of recovery in older adults after elective joint replacement surgery. Archives of Physical Medicine and Rehabilitation. https://doi.org/10.1016/j.apmr.2020.10.123 Colorado Physical Therapy Network. (n.d.). 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Minimal clinically important difference of the Disabilities of the Arm, Shoulder and Hand outcome measure (DASH) and its shortened version (QuickDASH). Journal of Orthopaedic & Sports Physical Therapy, 44(1), 30-39. https://doi.org/10.2519/jospt.2014.4893 Gummesson, C., Atroshi, I., & Ekdahl, C. (2003). The Disabilities of the Arm, Shoulder and Hand (DASH) outcome questionnaire: Longitudinal construct validity and measuring self-rated health change after surgery. BMC Musculoskeletal Disorders, 4(1). https://doi.org/10.1186/1471-2474-4-11 Hamilton, C. B., & Chesworth, B. M. (2013). A Rasch-validated version of the upper extremity functional index for interval-level measurement of upper extremity function. Physical Therapy, 93(11), 15071519. https://doi.org/10.2522/ptj.20130041 FOTO BY OT IN UE REHAB Hart, D. L. (2001). The power of outcomes: FOTO industrial outcomes tool initial assessment. IOS Press, 39-51. Hart, D. L., & Connolly, J. B. (2006). 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Limited forearm motion compensated by thoracohumeral kinematics when performing tasks requiring pronation and supination. Journal of Applied Biomechanics, 28(2), 12738. Pitchbook. (n.d.). Focus on Therapeutic Outcomes overview. Retrieved on April 20, 2021, from https://pitchbook.com/profiles/company/233572-69#funding Quality Payment Program. (2019). A quick start guide to the merit-based incentive payment system (MIPS): For 2019 participation. https://qpp.cms.gov/about/resource-library FOTO BY OT IN UE REHAB Raven, E. E., Haverkamp, D., Sierevelt, I. N., Van Montfoort, D. O., Pll, R. G., Blankevoort, L., & Tak, P. P. (2008). Construct validity and reliability of the Disability of Arm, Shoulder and Hand questionnaire for upper extremity complaints in rheumatoid arthritis. The Journal of Rheumatology, 35(12), 2334-2338. https://doi.org/10.3899/jrheum.080067 Stonner, M., Mackinnon, S., & Kaskutas, V. (2017). 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... RUNNING HEAD: CARING FOR THE CAREGIVERS Caring for the Caregivers: An Educational Program for Caregivers of Those with a Neurodegenerative Disease Hannah Hackman, OTS University of Indianapolis Denise Swegles BSN, RN, MBA, FACHE Schneck Medical Center Home Services 411 W. Tipton St, Seymour, IN 47274 Ph: 812-522-0460 May 2021 A doctoral capstone experience project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. University of Indianapolis IRB status was exempt from review. Under the direction of the faculty mentor: Lori Breeden, EdD, OTR University of Indianapolis 1400 E. Hanna Ave, Indianapolis, IN 46227 Ph: 317-788-3345 Christine Kroll, OTD, MS, OTR, FAOTA University of Indianapolis 1400 E. Hanna Ave, Indianapolis, IN 46227 Ph: 317-788-3577 1 CARING FOR THE CAREGIVERS 2 Abstract Objective: This paper addresses the needs of caregivers of a loved one with a neurodegenerative disease by developing a virtual pilot educational and training program based on a review of the current literature. The effectiveness of education and training strategies for providing care, reducing caregiver burden, and improving mental health and quality of life served as the focus of this program. Method: Eight caregivers of a loved one with Alzheimer's disease agreed to participate in a virtual pilot educational and training program via convenience sampling. Participants completed an outcome-based survey before and after implementing the program that assessed participant knowledge surrounding the provision of care for their loved one related to Alzheimer's disease and caregiver burden. Results: All participants demonstrated an average response increase on all 11 knowledge-based statements. Participants who were previous caregivers demonstrated a higher average response on the pre-survey and the post-survey than current caregiver participants. Discussion: This virtual pilot program's results indicate that caregivers of those with a neurodegenerative disease may benefit from additional education and training on the disease course, what to expect during care provision and safety as it relates to the completion of daily tasks. Keywords: caregiver, neurodegenerative disease, Alzheimer's disease, educational program, occupational therapy CARING FOR THE CAREGIVERS 3 Caring for the Caregivers: An Educational Program for Caregivers of Those with a Neurodegenerative Disease Providing care for an aging older adult can have an impact on the mental and physical health of the caregiver, in addition to uncertainties that may come with new diagnoses or conditions that their loved one may have (Alves et al., 2016; DiZazzo-Miller et al., 2017; LaManna et al., 2020; Whitebird et al., 2013). As the population of older adults increases, neurodegenerative diseases like Alzheimer's and Parkinson's are becoming more prevalent, requiring increased amounts of care from spouses, children, or other family members (DiZazzoMiller et al., 2014; DiZazzo-Miller et al., 2017; Donovan & Corcoran, 2010). In the United States, over 16 million unpaid caregivers provide care for people with Alzheimer's disease and other related disorders (Alzheimer's Association, 2020). Moreover, increased provision of care for a loved one with a neurodegenerative disease may result in increased caregiver burden and stress, as these individuals work to provide the best care for their loved one amid daily challenges and disease progression (DiZazzo-Miller et al., 2014; DiZazzo-Miller et al., 2017; Kim et al., 2011; Liu et al., 2017; Razani et al., 2007; Terayama et al., 2018; World Health Organization, 2020). One of the main contributors to an increase in physical and psychological caregiver burden is a lack of education and training when it comes to the safe and successful provision of care for an older adult with a neurodegenerative disease (DiZazzo-Miller et al., 2014; Edwards, 2015; Gonyea et al., 2006). Many individuals may experience increased stress and anxiety, declines in self-care, poor physical health and depression (Liu et al., 2017), and decreased social support as their loved one's condition progresses, leaving them uncertain of how to provide the CARING FOR THE CAREGIVERS 4 best care for themselves or their loved one (Edwards, 2015; LaManna et al., 2020; Sperling et al., 2020). Caring for a loved one with a neurodegenerative disease amid the current COVID-19 pandemic has increased caregiver burden due to the continued decline of the care recipient during the lockdown period (Borges-Machado et al., 2020; Li et al., 2021; Mok et al., 2020; Tsapanou et al., 2020). Efforts to social distance and remain safe have led to discontinued health care and respite services in the home, leaving caregivers feeling unprepared or uncertain of how to properly care for their loved ones throughout the disease progression (Cohen et al., 2020; Greenberg et al., 2020). A study by Altieri & Santangelo (2020) indicated the prevalence of this issue, with decreased resiliency and increased symptoms of depression experienced in those providing care for a loved one with a neurodegenerative disease. These disparities for caregivers of loved ones with neurodegenerative diseases are related to a lack of understanding and communication with healthcare professionals (Ducharme et al., 2011; Fields et al., 2018; LaManna et al., 2020; Liu et al., 2017). Furthermore, caregivers may feel the need to express their concerns for caring for their loved ones, including safety, independence, stress management, and maintaining a solid social support system (Edwards, 2015; Jennings et al., 2017). Factors such as these may disrupt occupational participation for caregivers and their loved ones, resulting in an imbalance between desired and necessary tasks and activities (Dooley & Hinojosa, 2004; Edwards, 2015). Providing education and training for caregivers from an occupational therapy perspective has demonstrated benefits regarding strategies for improving overall mental health, access to community resources, and proper safety when assisting a loved one with completion of any activity of daily living (ADL) or instrumental activity of daily living (IADL) (DiZazzo-Miller et al., 2014; DiZazzo-Miller et al., 2017; Dooley CARING FOR THE CAREGIVERS 5 & Hinojosa, 2004; Edwards, 2015; Piersol et al., 2017; Thinnes & Padilla, 2011; Razani et al., 2007). Therefore, occupational therapists can administer and lead supportive educational and training strategies to meet caregiver needs. The author sought to understand the needs of caregivers of a loved one with a neurodegenerative disease during the global pandemic of COVID-19. Based on those changing needs and environmental demands, the author endeavored to design a relevant and effective caregiver intervention program, advocating for occupational therapy's role in caregiver intervention. Use of the PEO Model and Knowles' Model of Andragogy to design a program for caregivers focusing on the principles of caregiver education and training for those caring for a loved one with a neurodegenerative disease is a necessary component to the success of the program upon implementation. The virtual modules covered various topics and focused on addressing the caregiver's unique needs concerning their ability to interact with their daily environment and current occupational performance according to the PEO Model (Cole & Tufano, 2008; Dooley & Hinojosa, 2004). This model's versatility allowed consideration for each caregiver's needs and concerns while incorporating strategies for different individuals in the future. Furthermore, addressing individual caregiver needs through an assessment of environmental and occupational fit may result in more significant interaction and occupational performance among the caregiver and their loved one (Donovan & Corcoran, 2010; Dooley & Hinojosa, 2004). Doing so will help decrease caregiver burden, increase knowledge and resources for the caregiver, and improve satisfaction with the caregiver roles and occupations (Ziff et al., 2000). Knowles' Model of Andragogy guided the daily implementation of the project, focusing on how to provide the best virtual learning environment for caregivers of those with a neurodegenerative disease (Chan, 2010). The development of the virtual materials via a CARING FOR THE CAREGIVERS 6 discussion of interested caregivers' learned experiences allowed the author to create a virtual program that was both internally motivating and valued concerning why this information is needed (Chan, 2010). Chan (2010) and McGrath (2009) discussed the importance of facilitating a learning environment concerning internal and external motivation, according to the principles of andragogy. Therefore, the utilization of these components to create a virtual program for caregivers of a loved one with a neurodegenerative disease that addressed their needs concerning the understanding of the disease process, provision of care, and reduction of caregiver burden is necessary. In a review of the current literature and research on providing care for someone with a neurodegenerative disease, there is a focus on the effectiveness of education and training strategies for providing care, reducing caregiver burden, and improving mental health and quality of life. Literature Review The following paragraphs include an examination of the literature that guided the development of this project. The literature examined includes information on caregiver education and training, improvement of caregiver burden and mental health, and improvement of caregiver quality of life for those providing care to a loved one with a neurodegenerative disease. Moreover, the literature review incorporates current research on how the COVID-19 global pandemic has impacted caregivers of those with a neurodegenerative disease. It is essential to address the limitations of this project with the global pandemic of COVID-19. Efforts to social distance and ensure the community's safety have led to the development of virtual education and training materials for caregivers, as required by the organization's program development guidelines. Social distancing has restricted human interaction and the implementation of an in- CARING FOR THE CAREGIVERS 7 person support group for caregivers of those with a neurodegenerative disease as initially outlined for this project before the COVID-19 pandemic. Caregivers are experiencing increased isolation, stress, and uncertainty with how to provide care for their loved ones due to the global COVID-19 pandemic restrictions (Altieri & Santangelo, 2020; Cohen et al., 2020; Greenberg et al., 2020; Mok et al., 2020), indicating the need for resources that are easily accessible in an alternative format. Therefore, presenting caregiver education and training in a virtual format for those caring for someone with a neurodegenerative disease has been favored by caregivers due to ease of access and efficiency while providing care for their loved ones (Ramirez et al., 2021). Incorporating current literature on the importance of addressing neurodegenerative disease caregiver needs into a virtual, pandemic-safe format is necessary to address the limitations of this program as indicated by the COVID-19 pandemic. Caregiver Education and Training for the Provision of Care Providing education to caregivers of individuals with a neurodegenerative disease on assisting their loved one with activities of daily living has demonstrated good carryover and maintenance (DiZazzo-Miller et al., 2014; DiZazzo-Miller et al., 2017). Furthermore, caregivers may gain an increased skillset into providing care while learning strategies to improve their mental health (DiZazzo-Miller et al., 2017; Piersol et al., 2017; Terayama et al., 2018). Researchers have demonstrated the influence of educational strategies for those caring for an individual with dementia on the reduction of depression, anxiety, or other stressors that may result from the increased provision of care as the disease progresses (Piersol et al., 2017; Thinnes & Padilla, 2011; Terayama et al., 2018). The social isolation caused by the COVID-19 pandemic has demonstrated the importance of skill-based training and established routines with decreasing CARING FOR THE CAREGIVERS 8 caregiver and care recipient stress and anxiety when battling a neurodegenerative disease (Ercoli et al., 2021). Intervention programs designed to build a foundational knowledge for care provision have demonstrated improved caregiver confidence and preparedness in making safe decisions for a loved one with a neurodegenerative disease (DiZazzo-Miller et al., 2017; Ducharme et al., 2011). Sperling et al. (2020) implemented a caregiver intervention program that demonstrated a reduction in caregiver burden through education about the course of the disease regarding care provision, improvement of coping skills, and utilization of community support. Gonzalez et al. (2014) and Graff et al. (2003) highlighted the benefit of skill-based education and training programs for caregivers of those with a neurodegenerative disease concerning increased feelings of caregiver competence during daily tasks. Furthermore, these programs have utilized outcome measures designed to assess knowledge of basic activities of daily living, confidence in the provision of care, performance of and satisfaction with the completion of daily tasks as a caregiver, and mental health in terms of coping strategies (DiZazzo-Miller et al., 2014; DiZazzoMiller et al., 2017; Ducharme et al., 2011; Sperling et al., 2020). The provision of basic knowledge in terms of the completion of hygiene activities, transfers, or food consumption can increase awareness of successful care strategies while decreasing the risk of injury to the caregiver or their loved one (DiZazzo-Miller et al., 2014; DiZazzo-Miller et al., 2017). Multiple studies illustrate the benefits of caregiver education on caregiver quality of life or overall well-being to physical health, mental health, and planning for future care strategies in terms of disease progression (DiZazzo-Miller et al., 2017; Ducharme et al., 2010; Peirsol et al., 2017; Roland & Chappell, 2019; Thinnes & Padilla, 2011). Also, educating caregivers on strengthening and receiving support during care provision for a loved CARING FOR THE CAREGIVERS 9 one with a neurodegenerative disease is necessary for caregiver well-being (Edwards, 2015; Piersol et al., 2017). A finding such as this is relevant, given that caregivers have identified the need for a robust social support system from family, friends, and the community (Edwards, 2015; Jennings et al., 2017; Piersol et al., 2017). Overall, occupational therapy practitioners that design caregiver education and training programs must keep the caregiver in mind, adjusting to their level of understanding regarding healthcare terminology and the benefit of shared knowledge (Corcoran & Gitlin, 2001; Fields et al., 2018). Improvement of Caregiver Burden and Mental Health In addition to providing caregivers with education and training on caring for their loved ones with a neurodegenerative disease, it is essential to address the physical and mental stressors they may feel in the process (Chin-Ching Chung, 1997; Whitebird et al., 2013). Moreover, there was a success after the implementation of various programs to decrease caregiver burden, rates of depression or anxiety, and other stressors through strategies that target mental health and wellbeing (Ducharme et al., 2011; Gonyea et al., 2006; Piersol et al., 2017; Roland & Chappell, 2019; Terayama et al., 2018; Whitebird et al., 2013). Understanding the caregivers' experiences throughout the progression of their loved one's disease can help healthcare professionals tailor the supportive strategies offered in various programs (Chiao et al., 2015; Roland & Chappell, 2019). Tailored support for caregivers has led to the development of successful interventions designed to improve stress levels via awareness of coping strategies and techniques (Alves et al., 2016; Ducharme et al., 2011; Piersol et al., 2017). The implementation of programs designed to target problem-solving, developing a positive mindset about caregiving, and engagement in selfcare is related to improved caregiver well-being and confidence in the provision of care for a loved one with a neurodegenerative disease (Donovan & Corcoran, 2010; Ducharme et al., 2011; CARING FOR THE CAREGIVERS 10 Piersol et al., 2017). Group sessions that involve the use of mindfulness techniques (Whitebird et al., 2012), reframing patterns of thinking (Piersol et al., 2017), and the benefits of exercise (Piersol et al., 2017; Whitebird et al., 2012) are some strategies that can reduce caregiver stress levels and burden while improving mental health. Transitioning to a new role as a caregiver (Alves et al., 2016; Ducharme et al., 2011) and symptom management for their loved one with a neurodegenerative disease are also techniques that can reduce caregiver stress levels or feelings of burden (Gonyea et al., 2006; Thinnes & Padilla, 2011). Providing caregivers with strategies they can use to increase their social supports or access to community resources is another component of intervention that may decrease feelings of caregiver burden and stress while improving mental and physical well-being (Edwards, 2015; Jennings et al., 2017; LaManna et al., 2020; Thinnes & Padilla, 2011). Multi-faceted educational interventions have demonstrated improved outcomes with the caregiver role, pointing to the need for caregiver inclusion during health care practices to address caregivers' mental and physical health (LaManna et al., 2020; Ostwald et al., 1999). Individuals in the field of occupational therapy have demonstrated the benefits of interventions that focus on helping the caregiver and their loved one at the same time, facilitating positive behaviors and attitudes when it comes to the provision of care (Donovan & Corcoran, 2010; Edwards, 2015; Dooley & Hinojosa, 2004). Moreover, providing educational strategies to caregivers to reduce the symptoms of depression and anxiety while relieving burden has been shown to improve the mental health and well-being of their loved ones (Terayama et al., 2018; Ostwald et al., 1999), even during the midst of the COVID-19 pandemic (Borges-Machado et al., 2020). Creating specific interventions that involve modifying caregiver behaviors to effectively manage their mental health is more beneficial than CARING FOR THE CAREGIVERS 11 generalized strategies for those who are not currently providing care for a loved one with a neurodegenerative disease (Gonyea et al., 2006; Jennings et al., 2017). Improvement of Caregiver QoL In addition to intervention strategies designed to educate caregivers on the provision of care and reduce burden, health care professionals must maximize their knowledge on community resources that can improve caregiver quality of life (Roland & Chappell, 2019; Ziff et al., 2000). Kim et al. (2011) discussed the relationship between decreased caregiver quality of life and the number of hours spent in this role, indicating the importance of a comprehensive approach to resource provision from the health care team. The field of occupational therapy can positively influence caregiver quality of life and overall burden through targeted caregiver and patient intervention (Dooley & Hinojosa, 2004) including anxiety management strategies and feelings of competency during care provision (Burke et al., 2017). Other caregiver-centered intervention programs illustrate a similar effect, highlighting the importance of addressing multiple components of caregiver need concerning improved wellbeing and life satisfaction (Burke et al., 2017; Liu et al., 2016; Sperling et al., 2020). Therefore, the relevance of a multi-component approach to caregiver intervention is demonstrated through both current and past research in multiple health care concentrations, especially in the field of occupational therapy. Hogan et al. (2004) further illustrated the role of occupational therapists when providing support to caregivers of those with a neurodegenerative disease, addressing the adverse effects of constant care provision while improving the overall quality of life. Research regarding an occupational therapist's role in helping caregivers find positive meaning in the provision of care is lacking, even with the benefit of occupational adaptation and modification from this rehabilitation field (Donovan & Corcoran, 2010). DiZazzo-Miller et al. CARING FOR THE CAREGIVERS 12 (2017) and Edwards (2015) solidified this need by demonstrating the benefit of holistic occupational therapy practice with various components of caregiver quality of life, including physical health, after self-care training and education in a variety of domains. Therefore, it is essential to illustrate these benefits through continued program development, advocacy, and research concerning overall quality-of-life improvement in caregivers. The author seeks to address the needs of caregivers of a loved one with a neurodegenerative disease amid the global COVID-19 pandemic by developing and implementing a virtual program designed to provide educational training and increased knowledge for the provision of care and strategies to reduce caregiver burden, using the occupational therapy practice skillset. Methods The methods section described below is separated into two parts. The first will describe the processes related to completing the needs assessment, which served as the foundation for the virtual educational program. Second, the reader will find a description of the processes that contributed to the virtual educational program's design and data collection to determine its effectiveness. Needs Assessment Needs Assessment Participants The author utilized purposeful sampling and survey methodology to collect experiences and opinions from rehabilitation professionals, nurses, a social worker, and members of a previous Alzheimer's disease caregiver support group on the need for an education and training program for caregivers of those with a neurodegenerative disease. An occupational therapist, a physical therapist, a social worker, and five registered nurses were among the staff level practitioners surveyed, with all of the registered nurses being part of the Nursing Intervention CARING FOR THE CAREGIVERS 13 and the Care of the Hospital System Elderly (NICHE) Team at Schneck Medical Center. In addition to surveying staff-level practitioners, the author contacted a registered nurse and former Alzheimer's disease caregiver support group leader at Schneck Medical Center. This registered nurse participated in the needs assessment via phone interview. Finally, the author obtained access to 26 caregivers in the area who had previously attended the Alzheimer's disease caregiver support group held at Schneck Medical Center, 12 of which participated in the needs assessment via phone interview. Of these individuals, only one was currently providing care to a loved one with Alzheimer's disease. The remaining 11 individuals had care recipients in a long-term care facility or had care recipients who passed away due to disease progression. All hospital-based individuals surveyed were female; of the caregiver participants, nine were female, and three were male. Needs Assessment Procedures The author designed the following questionnaires for participants in the needs assessment based on current research and success with open-ended interviews (Borges-Machado et al., 2020; Corcoran & Gitlin, 2001; Edwards, 2015; Liu et al., 2016), questionnaires (Altieri & Santangelo, 2020; Gonzalez et al., 2014; Terayama et al., 2018), and surveys (Altieri & Santangelo, 2020; Alves et al., 2015; Cohen et al., 2020; DiZazzo-Miller et al., 2014; LaManna et al., 2020; Li et al., 2020; Roland & Chappell, 2019) for caregivers and healthcare professionals working with those with a neurodegenerative disease. An open-ended, interview-style questionnaire consisting of five questions and space for additional comments was issued to one occupational therapist, one physical therapist, and one social worker within the Home Services department at Schneck Medical Center. This questionnaire was designed to assess the needs of caregivers for persons with neurodegenerative diseases from each professional's perspective. Also, the author attended a CARING FOR THE CAREGIVERS 14 Nursing Intervention and the Care of the Hospital System Elderly (NICHE) Team meeting at Schneck Medical center to administer a seven-question, open-ended, interview-style questionnaire to five registered nurses. This questionnaire was designed to assess the needs of caregivers for persons with neurodegenerative diseases from a nurse's point of view. The fivequestion phone interview administered to the registered nurse and former Alzheimer's disease caregiver support group leader was designed to assess her experiences, interactions, and the needs of those caregivers who came to the monthly support group meetings. For the 12 former Alzheimer's disease caregiver support group attendees, seven open-ended, interview-style questions designed to assess their experience in caring for their loved one with Alzheimer's disease were administered via phone interview. The needs assessments were conducted between January 18 and January 25, 2021. See Appendix A for the questions that were administered to the hospital-based individuals and caregiver participants. All participants in the needs assessments were informed that their identifying information, personal stories, and opinions would be kept confidential per the Health Insurance Portability and Accountability Act (HIPAA). Needs Assessment Data Analysis After the needs assessments with each of the key stakeholders were completed, the author was able to discern the need for an educational training program for caregivers of those with Alzheimer's disease. This included content that participants may find most valuable in addition to current research on the benefit of educational programs for caregivers of a loved one with a neurodegenerative disease (DiZazzo-Miller et al., 2017; DiZazzo-Miller et al., 2014; Ducharme et al., 2011; Sperling et al., 2019; Terayama et al., 2018). Using qualitative data analysis strategies similar to Edwards (2015), the author analyzed all survey results thematically. The CARING FOR THE CAREGIVERS 15 themes identified provided a foundation for the educational programming for caregivers of people with neurodegenerative diseases. Four common themes surrounding the needs of caregivers of people with a neurodegenerative disease were identified. These themes included: knowing more about the disease progression, the caregiver role during the disease course, accessing community resources and caregiver support, and assistance and safety with daily tasks (transfers, bathing, dressing, eating, and medication management) as the care recipient's condition progresses. These key themes and support from previous literature surrounding this topic served as the foundation for developing a virtual neurodegenerative disease caregiver education program, outlined in detail. Educational Program Development Program Participants Participants in the virtual caregiver education program were recruited via convenience sampling from the group of former Alzheimer's caregiver support group attendees who had previously participated in the needs assessment. Of these 12 individuals, six females agreed to participate. Only one individual in this group was currently providing care to a loved one with Alzheimer's disease. The other participants had care recipients who had died or who were currently in a long-term care facility. Also, participants were recruited via convenience sampling from the Schneck Medical Center Facebook page, as operated by the Schneck marketing team. Interested participants were required to respond to the Facebook post by February 9, 2021, by calling the Schneck Medical Center Home Services Office Phone. These individuals were eligible to participate in the virtual caregiver education program if they were new or current caregivers of a loved one recently diagnosed with Alzheimer's disease. One male and one female, CARING FOR THE CAREGIVERS 16 both of whom were current caregivers of a loved one with Alzheimer's disease, responded to the Facebook post and were eligible to participate. Eight individuals participated in the virtual education program for caregivers of those with Alzheimer's disease. Of these eight participants, three were current caregivers, and five were previous caregivers. Individuals were required to have access to a computer, the internet, and a working e-mail address to participate. Prior to the program implementation, the author called all interested participants to make sure they were still interested in participating and confirming their e-mail addresses. All participants were informed that their identifying information and opinions were kept confidential and per HIPPA. Communication with participants was completed via the HIPPA compliant and secure Schneck Medical Center phone and e-mail system to ensure confidentiality. Educational Program Procedures Due to the COVID-19 pandemic and the restrictions put in place by Schneck Medical Center, this Alzheimer's disease caregiver educational program was piloted virtually via a series of three educational and training modules featuring the author as the educator and host. The author partnered with the Schneck marketing team to film the modules made available as an accessible community resource after the pilot program. The author created an outcome-based pre/post-survey to assess increased participant knowledge, based on the educational content covered in each module and previous literature featuring pre-/posttest designs for educational and training programs for caregivers of those with a neurodegenerative disease. The success of a pre/posttest design for the assessment of a training program or a series of interventions for caregivers of those with a neurodegenerative disease from Alves et al. (2015), Dizazzo-Miller et al. (2017), Dizazzo-Miller et al. (2014), Dooley & Hinojosa (2004), Ducharme et al. (2011), CARING FOR THE CAREGIVERS 17 Gonyea et al. (2006), Sperling et al. (2019), Terayama et al. (2018), and Whitebird et al. (2012), was used to guide the development of this outcome-based pre/post-survey. This survey consisted of 11 knowledge-based statements that participants rated on a five-point Likert scale (1=strongly disagree to 5=strongly agree). See Appendix B for the detailed pre/post-survey that was administered. Google forms were used to create the pre/post survey sent to each participant via the secure hospital-based email system one week before the first virtual module was released and two days after the third virtual module was released. This pre/post survey was created to assess any change in knowledge among previous and current caregivers and determine the success of the virtual Alzheimer's disease caregiver education program. In addition to the 11 knowledge-based items, the postsurvey contained four opened-ended, opinion-based questions about the pilot program; participant responses were optional. Program implementation occurred between February 15, 2021, and March 15, 2021. One virtual module was released to participant e-mails each week for three weeks after the pre-survey was completed, giving participants one week to view each module. These virtual modules were created based on the needs assessments conducted with key stakeholders in the implementation of this pilot program and recent literature that included the benefit of a caregiver training program or intervention group for those providing care to a loved one with a neurodegenerative disease. Findings from Dizazzo-Miller et al. (2017), Dizazzo-Miller et al. (2014), Dooley & Hinojosa (2004), Ducharme et al. (2011), Gonyea et al. (2006), Sperling et al. (2019), and Terayama et al. (2018) on the relevance of education and training programs or interventions for caregivers of those with a neurodegenerative disease were used to guide the content created for each virtual module. CARING FOR THE CAREGIVERS 18 The first virtual module contained one educational video, with content regarding the early, middle, and late stages of Alzheimer's disease, the caregiver role during each stage, and local community resources that may benefit the caregiver and the care recipient at each stage (Ducharme et al., 2011; Gonyea et al., 2006; Sperling et al., 2019, Terayama et al., 2018). The second virtual module consisted of a series of five brief training videos that included demonstrations of safe transfers, dressing, bathing, feeding and eating, medication management techniques, and how to manage care recipient behaviors during these tasks (Dizazzo-Miller et al., 2017; Dizazzo-Miller et al., 2014; Dooley & Hinojosa, 2004). The third virtual module included an educational video on recognizing symptoms of stress and depression, strategies for stress relief and coping with caregiver burden, and local community resources for virtual or in-person caregiver support (Gonyea et al., 2006; Sperling et al., 2019). This module also contained an attached resource guide for caregivers, including local and national resources for themselves and their loved ones. See Appendix C for the links to the videos included in modules one through three and the additional resources made available to participants and the site to ensure the sustainability and adaptability of this program in the future. The author contacted participants each week via the HIPPA compliant and secure phone system at Schneck Medical Center to ensure that they received the automated e-mail. If participants did not receive the e-mail initially via the automated system, it was forwarded to them. All virtual Alzheimer's caregiver educational modules were made available on the Schneck Medical Center website on the community resource page. Caregivers who participated in the virtual educational program were given direct access to these resources once they completed the post-survey after viewing module three. CARING FOR THE CAREGIVERS 19 Educational Program Survey Data Analysis A Microsoft Excel spreadsheet was utilized to collect data from all participant responses on the pre-survey and post-survey. More specifically, this Excel spreadsheet was used to track and analyze pre and post-survey scores and any change in scores. Descriptive statistics, including the mean and mode, were used to assess the change in knowledge from the pre-survey to the post-survey for all participants and as a comparison between previous and current caregiver participants, similar to the process of data analysis outlined in Ducharme et al. (2011). The descriptive statistics were calculated via Microsoft Excel. Additionally, the author utilized the automatically calculated percentage of participant responses for each value on the Likert scale for the 11 knowledge statements on the pre-and-post survey via Google Forms. These data analysis measures were completed to assess the effectiveness of the implemented virtual educational program for caregivers of a loved one with Alzheimer's disease. After the pre/postsurvey results were collected and finalized from previous and current or new caregivers, knowledge-based outcomes were assessed. Responses from the open-ended questions on the post-survey were identified thematically, based on common themes that the author noted. Results All eight participants in the pilot virtual educational program for caregivers of those with Alzheimer's disease completed the pre-survey before having access to the virtual education and training videos in modules one through three; however, only seven completed the post-survey by the deadline of March 15, 2021. Therefore, omission of the post-survey data for the participant who did not complete the post-survey by the deadline ensures accuracy of the results. This individual was a previous caregiver participant. Of the seven participants who completed the post-survey, six completed the open-ended questions included at the end of the post-survey. The CARING FOR THE CAREGIVERS 20 individual who did not complete the open-ended questions at the end of the post-survey was a current caregiver participant. Overall, the participant response average for both previous and current caregivers on all knowledge statements increased from the pre-survey to the post-survey, as seen in Table 1. All participants demonstrated the most significant average response increase on knowledge statement three after being provided access to the contents of modules one through three. Percent values for participant responses on knowledge statement number three for the pre-survey were 62.5% disagree (5), 25% neutral (3), and 12.5% agree (1), and 42.9% strongly agree (3) and 57.1% agree (4) for the post-survey. The second-largest average response increase was demonstrated by participants on knowledge statement 11, from the pre-survey to the post-survey. Percent values for participant responses on knowledge statement number 11 for the pre-survey were 12.5% strongly disagree (1), 37.5% disagree (3), 50% neutral (4), and 42.9% strongly agree (3). Percent values for participant responses on the post-survey for knowledge statement number 11 were 42.9% agree (3) and 14.3% neutral (1). For the post-survey, one participant responded with "neutral" for knowledge statements six and 11. All other participant responses on the postsurvey were either "strongly agree" or "agree" for all knowledge statements. Table 1 Caregiver educational program participant (previous and current caregiver) survey results Caregiver Knowledge Statement 1. I understand the stages of Alzheimers disease and what to expect when caring for my loved one. Pre-Survey Post- Change from Average Survey Pre-Survey to Average Post-Survey 4.57 1.19 3.38 CARING FOR THE CAREGIVERS 2. I know when to ask for help when caring 21 3.50 4.57 1.07 2.50 4.43 1.93 3.00 4.43 1.43 3.00 4.43 1.43 3.13 4.29 1.16 3.50 4.57 1.07 2.88 4.57 1.69 3.13 4.57 1.44 3.00 4.43 1.43 2.38 4.29 1.91 for my loved one with Alzheimers disease. 3. I know where to go for help or who to contact when caring for my loved one with Alzheimers disease. 4. I am aware of safe techniques to use when providing care to my loved one with Alzheimers disease. 5. I know at least 2 effective techniques for increasing my loved ones participation in daily tasks. 6. I feel confident providing care to my loved one with Alzheimers disease. 7. I can recognize at least 2 signs of personal stress as it relates to providing care for my loved one with Alzheimers disease. 8. I know 2 effective stress management strategies to use while providing care to my loved one with Alzheimers disease. 9. I know at least 2 signs of depression as it relates to caregiver burden. 10. I know at least 2 coping strategies to use as it relates to caregiver burden. 11. I know at least 3 community resources that I can access for my own self-care needs and the needs of my loved one with Alzheimers disease. CARING FOR THE CAREGIVERS 22 Note. All values are expressed as the mean (average) response for each knowledge statement on a five-point Likert scale (1=strongly disagree, 2=disagree, 3= neutral, 4=agree, 5= strongly agree). When comparing the response averages on each knowledge statement between previous caregiver participants and current caregiver participants, previous caregiver participants had higher response averages on all knowledge statements on both the pre-survey and the postsurvey after being provided access to the contents of modules one through three (see Table 2). Current caregiver participants demonstrated lower response averages on all knowledge statements on the pre-survey than previous caregiver participants. However, current caregiver participants demonstrated increased response averages on all knowledge statements on the postsurvey. The response averages for all knowledge statements for the current caregiver participants were lower than the previous caregiver participants' post-survey (see Table 2). Previous caregiver participants demonstrated the most significant average response increase on knowledge statements three and 11 from the pre-survey to the post-survey. However, the previous caregiver participants' smallest average response increase was on knowledge statement seven, which related to signs of stress. Current caregiver participants demonstrated the most significant average response increase on knowledge statements five and eight from the pre-survey to the post-survey. Current caregiver participants demonstrated the smallest average response increase on knowledge statement two, from the pre-survey to the post-survey. Table 2 Caregiver educational program previous v. current caregiver participant survey results Caregiver Previous Previous Knowledge Caregiver Caregiver from Pre- Caregiver Caregiver from Pre- Statement Pre- Pre- Post- Change Survey to Current Current Post- Change Survey to CARING FOR THE CAREGIVERS 1. I understand 23 Survey Survey Post- Survey Survey Post- Average Average Survey for Average Average Survey for Previous Current Caregivers Caregivers 3.80 5.00 1.20 2.67 4.00 1.33 3.80 5.00 1.20 3.00 4.00 1.00 2.80 4.75 1.95 2.00 4.00 2.00 the stages of Alzheimers disease and what to expect when caring for my loved one. 2. I know when to ask for help when caring for my loved one with Alzheimers disease. 3. I know where to go for help or who to contact when caring for my loved one with CARING FOR THE CAREGIVERS 24 Alzheimers disease. 4. I am aware 3.60 4.75 1.15 2.00 4.00 2.00 3.00 4.75 1.75 1.67 4.00 2.33 3.80 4.75 0.95 2.67 3.67 1.00 of safe techniques to use when providing care to my loved one with Alzheimers disease. 5. I know at least 2 effective techniques for increasing my loved ones participation in daily tasks. 6. I feel confident providing care to my loved one with Alzheimers disease. CARING FOR THE CAREGIVERS 7. I can 25 4.00 4.75 0.75 2.67 4.33 1.66 3.40 4.75 1.35 2.00 4.33 2.33 3.80 5.00 1.20 2.00 4.00 2.00 recognize at least 2 signs of personal stress as it relates to providing care for my loved one with Alzheimers disease. 8. I know 2 effective stress management strategies to use while providing care to my loved one with Alzheimers disease. 9. I know at least 2 signs of depression as it relates to caregiver burden. CARING FOR THE CAREGIVERS 10. I know at 26 3.60 4.75 1.15 2.00 4.00 2.00 2.80 4.75 1.95 1.67 3.67 2.00 least 2 coping strategies to use as it relates to caregiver burden. 11. I know at least 3 community resources that I can access for my own self-care needs and the needs of my loved one with Alzheimers disease. Note. All values are expressed as the mean (average) response for each knowledge statement on a five-point Likert scale (1=strongly disagree, 2=disagree, 3= neutral, 4=agree, 5= strongly agree). When comparing the overall average response from all participants on the pre-survey and the post-survey, there was a higher overall average response for both previous and current caregiver participants on the post-survey (see Figure 1). Current caregiver participants demonstrated the most significant average response increase for all knowledge statements from CARING FOR THE CAREGIVERS 27 the pre-survey to the post-survey. Previous caregiver participants demonstrated the least average response increase from the pre-survey to the post-survey. Additionally, the mode, or most frequently recorded response from all participants, increased from the pre-survey to the postsurvey (see Figure 1). Current caregiver participants demonstrated the most significant mode increase from the pre-survey to the post-survey, compared to previous caregiver participants and all participants (see Figure 1). Figure 1 Caregiver Educational Program Participant Survey Results (Mean & Mode) 6 5 4 Respnse value 3 4 3.03 3.53 4.47 4 5 4.82 5 4 4 2.21 2 2 1 0 Pre-survey: All Caregiver Participants Pre-survey: Previous Caregiver Participants Pre-survey: Current Caregiver Participants Post-survey: All Caregiver Participants Post-survey: Previous Caregiver Participants Post-survey: Current Caregiver Participants Participants Mean for All Knowledge Statements Mode for All Knowledge Statements Note. The values shown are expressed as the mean (average) and mode (most frequent) in relation to response value for all knowledge statements from all caregiver participants and previous versus current caregiver participants. Each knowledge statement was rated on a fivepoint Likert scale (1=strongly disagree, 2=disagree, 3= neutral, 4=agree, 5= strongly agree). In terms of the open-ended response questions, six participants provided feedback on their experience and satisfaction with the virtual educational program for caregivers of a loved one with Alzheimer's disease. For each of the four questions, the author identified common CARING FOR THE CAREGIVERS 28 themes based on participant responses. For question one ("What did you find most helpful about these virtual modules?"), participants stated that the education and training provided to them was informative, clear, and easily understood. The second question ("Would you recommend a similar program to others?") resulted in similar answers, as participants stated that they would recommend this program to others if it was offered virtually again or in-person. However, responses to question three ("How likely would you be to participate in this program again if it was offered virtually? Or if it was offered in person?") were varied among participants, given that three were current caregivers and three were previous caregivers. The three current caregiver participants stated that they would be willing to participate again. Of these three participants, one stated that they would prefer the program to be in-person, one stated that they would prefer the program to be virtual, and the other had no preference. The previous caregiver participants who responded to this question stated that they would not participate again because they were no longer fulfilling a caregiver role. For question four (What other materials or information would you have included in this program if any?"), some participants suggested including previously covered information in the educational and training videos and the resource guide. Two participants found the information comprehensive and stated that there was nothing they would add. Discussion Several studies found that caregiver intervention programs designed to educate and train caregivers of a loved one with a neurodegenerative disease can lead to improved caregiver confidence and reduced burden when providing their loved one with appropriate care (DiZazzoMiller et al., 2017; Ducharme et al., 2011; Sperling et al., 2020). Similarly, participants in this virtual pilot program demonstrated an average increase in knowledge from the pre-survey to the CARING FOR THE CAREGIVERS 29 post-survey after viewing the educational and training content included in modules one through three. Notably, participants demonstrated the most significant average response increase on knowledge statement three, with 62.5% disagree on the pre-survey to 57.1% agree and 42.9% strongly agree on the post-survey. Knowledge statement number 11 had the second-largest average response increase, with 50% neutral on the pre-survey to 42.9% agree on the postsurvey. It is essential to acknowledge the similarities in these knowledge statements, as each addresses awareness relating to community resources or assistance when caring for their loved one or their own self-care needs. Recognizing access to community resources as a primary caregiver need has been demonstrated through these program development efforts and mirrored in recent literature. For example, LaManna et al. (2020) report that community resources and social support opportunities for caregivers may help decrease caregiver burden and stress. All but one participant responded with "strongly agree" or "agree" to all knowledge statements on the postsurvey, indicating that participants increased their knowledge regarding the course of Alzheimer's disease, what to expect as a caregiver, safe strategies to incorporate during daily tasks, accessing community resources, and caregiver support. DiZazzo-Miller et al. (2014) indicated that educational programs designed to build skills among caregivers of those with dementia are necessary to reduce the difficulties that many of these caregivers may experience related to caring for their loved ones, further supporting the outcome of this program development. Previous caregiver participants demonstrated a higher response average on both the presurvey and the post-survey than current caregiver participants, demonstrating the benefit of experience with newly acquired knowledge related to this population (Edwards, 2015). The most CARING FOR THE CAREGIVERS 30 significant average response increase occurred for previous caregiver participants on knowledge statements three and eleven, mirroring the overall average response increase among all participants. A finding such as this may result from the high number of previous caregiver participants compared to the low number of current caregiver participants. Findings such as these demonstrate the importance of access to community resources and caregiver support as a necessity for educational and training programs for caregivers of loved ones with Alzheimer's disease, no matter the experience level (LaManna et al., 2020). Recognizing signs of personal stress related to the provision of care was an area that previous caregiver participants were proficient in, as they demonstrated a lower average response increase on knowledge statement seven. Terayama et al. (2018) report that educating caregivers of those with dementia can reduce their burden and improve mental health. Therefore, the educational content designed to address caregiver burden may have been more beneficial for the previous caregiver participants if they had not already experienced the stressors associated with caring for a loved one with Alzheimer's disease. Current caregiver participants demonstrated a lower average response on the pre-survey than previous caregiver participants, indicating a gap in knowledge and experience regarding caring for their loved one with Alzheimer's disease. In previous studies, caregivers have experienced uncertainty regarding providing care for their loved ones with Alzheimer's disease, especially as the disease progresses (Edwards, 2015; LaManna et al., 2020; Sperling et al., 2020). Therefore, there are similarities in the literature and the pre-survey data for current caregiver participants in this pilot virtual educational program regarding the needs of caregivers of a loved one with a neurodegenerative disease. Current caregiver participants demonstrated an increase in knowledge on the post-survey, based on a higher average response increase on all knowledge CARING FOR THE CAREGIVERS 31 statements. Furthermore, the highest average response increase for current caregiver participants was on knowledge statements five and eight, indicating the benefit of training caregivers to maximize their loved one's independence while learning how to manage personal stress (DiZazzo-Miller et al., 2017; Sperling et al., 2020; Terayama et al., 2018). Knowing when to ask for help during care provision was a knowledge statement that current caregiver participants demonstrated the least average increase from the pre-survey to the post-survey, indicating that these individuals may have already had prior experience with asking healthcare professionals for help or seeking support from others. Edwards (2015) and Liu et al. (2016) discussed that healthcare professionals, including occupational therapists, address caregivers' needs with Alzheimer's disease through community resources and social support. Analysis of the outcome measures from this virtual pilot program indicates the impact that professional knowledge and community resources can have on caregivers of a loved one with Alzheimer's disease. Overall, the participants' average responses for all knowledge statements increased after implementing the virtual pilot program. These results indicate that education and training on daily care for the loved one and self-care for the caregiver are necessary components to increasing occupational performance in multiple contexts (DiZazzo-Miller et al., 2017; Dooley & Hinojosa, 2004; Edwards, 2015). The mean for all knowledge statements demonstrated the most significant increase from the pre-survey to the post-survey for current caregiver participants, indicating that the content covered in modules one through three was relevant to the experiences of current caregivers who are navigating their loved one's disease progression (DiZazzo-Miller et al., 2014; DiZazzo-Miller et al., 2017). Previous caregiver participants may have skewed the outcome of the pilot virtual educational program, given that there was a larger CARING FOR THE CAREGIVERS 32 number of these individuals who had previously experienced the process of being a caregiver to a loved one with Alzheimer's disease. Similarly, analyzing the mode, or most frequently recorded response, demonstrated a similar pattern for all participants. Although the mode for all participants increased from the presurvey to the post-survey, current caregiver participants demonstrated the most significant mode increase from the pre-survey to the post-survey. These results further solidify the need to recognize deficits in caregivers' occupational performance and maximize their knowledge for care provision through educational and training strategies (DiZazzo-Miller et al., 2014; DiZazzoMiller et al., 2017; Dooley & Hinojosa, 2004; Edwards, 2015). In analyzing the themes from the open-ended responses at the end of the post-survey, it is vital to recognize the commonalities among the six responses that occurred. Overall, the six participants that responded to the open-ended questions had similar feelings about the virtual pilot program. These participants stated that they found the program informative and easily understood and would recommend this program to others if given the option. Therefore, results from these open-ended questions are similar to those found in the literature regarding the benefit of education and training for caregivers of Alzheimer's disease (DiZazzo-Miller et al., 2014; DiZazzo-Miller et al., 2017; Ducharme et al., 2011; Edwards, 2015). Given that most participants had already experienced the caregiver role, half of them stated that they would no longer participate in this program if offered again. A larger group of participants with various needs is necessary to reach more community members within this population (DiZazzo-Miller et al., 2017). There was diversity among responses relating to this program's format in the future, indicating the need for healthcare professionals to create easily accessible resources for CARING FOR THE CAREGIVERS 33 community members who encounter similar caregiving experiences (Liu et al., 2016). Some participants stated that they would have added concepts to the program that were already included, indicating that they did not access all the content in each module or the content was not clear to them. According to the outcome measures, all participants were able to increase their knowledge surrounding the provision of care for their loved ones with Alzheimer's disease and self-care strategies for themselves as they relate to the profession of occupational therapy. It would be beneficial to assess a larger population of current caregiver participants for an inperson program led by an occupational therapist to address carryover and knowledge gained through participation in future program development efforts. Future Research The outcome of these program development efforts demonstrated the importance of accessible community resources for caregivers of a loved one with Alzheimer's disease concerning proper education, training, and relief of burden. Previous and current caregiver participants demonstrated an average response increase on all knowledge statements after accessing the educational and training content in modules one through three. These results indicate that the program content was relevant to the needs of these individuals. Additionally, advocating for the needs of caregivers of those with Alzheimer's disease can be done through successful intervention strategies in occupational therapy practice. Future program development efforts should focus on providing more opportunities for hands-on training and social support for caregivers as this relates to occupational therapy practice. Examining the idea of role change, increasing their loved one's independence in daily tasks, maintaining their mental and physical well-being, and learning about successful techniques to use during care provision are all ways that caregivers can benefit from a program like this one. Edwards (2015) suggested that CARING FOR THE CAREGIVERS 34 occupational therapists possess the knowledge and skills to address the unique needs of caregivers and their loved ones with Alzheimer's disease, addressing occupational imbalance throughout the disease progression. Implications for future program development efforts to occupational therapy practice should include strategies for "family caregivers to create a safer and more positive environment for both the caregiver and care recipient" (DiZazzo-Miller et al., 2017, p. 8). Limitations A small sample size of individuals from the same region may have contributed to the lack of diversity in responses on the outcome measure after implementing the virtual pilot educational program. An extended response deadline for the social media post may have been helpful to give more individuals the opportunity to see the post and share the post, resulting in more than two respondents who were current caregivers. Also, there may have been a component of previous caregiver bias from the five participants who had a loved one that had either already passed away or was currently in a long-term care facility due to Alzheimer's disease. Therefore, many of them may have already known about the educational and training strategies provided in modules one through three. Consideration of limited reliability and unknown validity of the outcome measure are two factors that may have been a limitation to this program development effort. Also, technical difficulties occurred with the secure, automated e-mail system used to send the content of modules one through three to participants. Three participants had to have the e-mails forwarded to them each week, as they did not receive them via the automated e-mail system. The data collected from the outcome measure may have been skewed, given that only seven participants responded to the post-survey by the deadline. It is essential to recognize that some participants CARING FOR THE CAREGIVERS 35 may not have watched all of the content or accessed the resource guide before taking the postsurvey. Some participants may not have understood the knowledge statements or interpreted them differently, impacting their level of agreement with each statement. Moreover, this pilot education and training program was delivered asynchronously, preventing participants from asking questions or seeking clarity from the author. Conclusion The program development project addresses the needs of caregivers of those with a neurodegenerative disease through education and training strategies to provide care, reduce caregiver burden, and improve mental health and quality of life. The outcome measure results indicate that an increase in knowledge occurred for all participants (previous and current caregivers) after accessing the educational and training content provided through the virtual pilot program for caregivers of those with Alzheimer's disease. Current caregiver participants demonstrated the most significant average response increase from the pre-survey to the postsurvey when examining all items' mean and mode in the data set. Previous caregiver participants demonstrated higher average responses on all knowledge statements on the pre-survey and the post-survey, indicating the benefit of experience with newly acquired knowledge. Despite a small sample size, a majority of which included previous caregiver participants, this virtual pilot program's success can be measured by the increase in knowledge and awareness of community resources as reported by participants. The versatility of the virtual modules included in the program contributes to future sustainability efforts, allowing for the addition of content or transition to an in-person format. Program development efforts, much like this one, have demonstrated improved caregiver confidence (Ducharme et al., 2011), increased knowledge regarding safety and assistance with CARING FOR THE CAREGIVERS 36 daily tasks (DiZazzo-Miller et al., 2014; DiZazzo-Miller et al., 2017), reduced caregiver burden, and improved mental health (Sperling et al., 2020; Terayama et al., 2018). The profession of occupational therapy can continue to influence individuals within this population through efforts to educate and train caregivers of those with a neurodegenerative disease, according to the principles of best practice now and in the future. This program development project contributes to the current literature surrounding caregiver education and training programs for those caring for a loved one with a neurodegenerative disease, demonstrating the importance of this concept within the future of occupational therapy practice. CARING FOR THE CAREGIVERS 37 References Altieri, M., & Santangelo, G. (2020). The psychological impact of COVID-19 pandemic and lockdown on caregivers of people with dementia. The American Journal of Geriatric Psychiatry, 29(1), 27-34. doi: 10.1016/j.japg.2020.10.009 Alves, S., Teixeira, L., Azevedo, M. J., Duarte, M., & Pal, C. (2016). Effectiveness of a psychoeducational programme for informal caregivers of older adults. Scandinavian Journal of Caring Sciences, 30(1), 65-73. doi: 10.1111/scs.12222 Alzheimers Association. (2020). Alzheimers and dementia: Facts and figures. https://www.alz.org/alzheimers-dementia/facts-figures Borges-Machado, F., Barros, D., Ribeiro, ., & Carvalho, J. (2020). 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Journal of Aging and Health, 31(2), 256-279. doi: 10.1177/0898264317729980 Sperling, S. A., Brown, D. S., Jensen, C., Inker, J., Mittelman, M. S., & Manning, C. A. (2020). FAMILIES: an effective healthcare intervention for caregivers of community dwelling people living with dementia. Aging & mental health, 24(10), 1700-1708. Terayama, H., Sakurai, H., Namioka, N., Jaime, R., Otakeguchi, K., Fukasawa, R., ... & Umahara, T. (2018). Caregivers education decreases depression symptoms and burden in caregivers of patients with dementia. Psychogeriatrics, 18(5), 327-333. doi: 10.1111/psyg.12337 Thinnes, A., & Padilla, R. (2011). Effect of educational and supportive strategies on the ability of caregivers of people with dementia to maintain participation in that role. American Journal of Occupational Therapy, 65(5), 541-549. doi: 10.5014/ajot.2011.002634 CARING FOR THE CAREGIVERS 43 Tsapanou, A., Papatriantafyllou, J. D., Yiannopoulou, K., Sali, D., Kalligerou, F., Ntanasi, E., ... & Sakka, P. (2020). The impact of COVID19 pandemic on people with mild cognitive impairment/dementia and on their caregivers. International Journal of Geriatric Psychiatry. doi: 10.1002/gps.5457 Whitebird, R. R., Kreitzer, M., Crain, A. L., Lewis, B. A., Hanson, L. R., & Enstad, C. J. (2013). Mindfulness-based stress reduction for family caregivers: a randomized controlled trial. The Gerontologist, 53(4), 676-686. doi: 10.1093/geront/gns126 World Health Organization. (2020, September 21). Dementia. https://www.who.int/newsroom/fact-sheets/detail/dementia Ziff, S. M., Schaffner, A. R., & Perkinson, M. A. (2000). Occupational therapy student research of the needs and characteristics of dementia caregivers. Physical & Occupational Therapy in Geriatrics, 17(2), 29-40. doi: 10.1080/J148v17n02_03 CARING FOR THE CAREGIVERS 44 Appendix A Assessing Caregiver Needs from A Social Workers Point of View: 1. What do you think is a social workers most important role regarding caregiver support of those caring for a loved one with Alzheimers or other related diseases? 2. What do you see as the most common activities that are lost when individuals care for a loved one with a neurodegenerative disease? Have you had any firsthand experiences with this during interactions with caregivers? 3. What need, if any, is there for a caregiver support group for those with Alzheimers and other related disorders? 4. What do you see as the most common caregiver needs when it comes to providing care? 5. What have you seen as the most common requests of caregivers of a loved one with Alzheimers disease when it comes to providing them with the resources that they need, from a social workers perspective? Additional Comments: Assessing Caregiver Needs from A Rehabilitation Professionals Point of View: 1. What do you think is a physical therapists/occupational therapists most important role regarding caregiver support for those caring for a loved one with Alzheimers or other related diseases? 2. What do you see as the most common activities/occupations that are lost when individuals care for a loved one with a neurodegenerative disease? Have you had any firsthand experiences with this during treatment sessions or interactions? 3. What need, if any, is there for a caregiver support group for those with Alzheimers and other related disorders? 4. What do you see as the most common caregiver needs when it comes to providing care? 5. Research has shown that caregivers of those with a neurodegenerative disease can benefit from OT/PT interventions. What do you think are the most common/important interventions for this population? Additional Comments: Assessing Needs of Caregivers of Those w/Alzheimers and other related diseases: *Administered to five registered nurses on the NICHE Team 1. What do you think caregivers biggest physical needs are when caring for their loved one? Social support needs? 2. Why would caregivers of those with neurodegenerative diseases (NDD) find a caregiver support group beneficial? 3. What is the biggest challenge when it comes to addressing the needs of caregivers? 4. What resources do you feel would be the most beneficial for caregivers and/or the NICHE Team to have access to with a new caregiver support program (ex. resources to help continue the program)? 5. Thinking about the NDD population and their caregivers, how do you perceive that their caregivers would handle the physical and mental challenges that come with a progressive disease? 6. Given your knowledge about rehab professionals, how do you think occupational therapists can work to address this issue? CARING FOR THE CAREGIVERS 45 7. Please provide any additional comments or thoughts relating to the need for program development in relation to caregiver support when caregiver for those with Alzheimers and other related disorders. Phone Interview Questions for Former Leader of Alzheimers Caregiver Support Group: 1. What kind of advice did your caregivers typically ask for? 2. What do they see as their biggest needs in relation to caring for a loved one? 3. Who did you have come and speak to the group? 4. What kind of feedback did you get from caregivers? What was meaningful to them? 5. Anything to share from personal conversations with caregivers (feelings of isolation, worries, stresses, etc.)? Phone Interview Questions for Previous Alzheimers Caregiver Support Group Attendants: 1. When your loved one was first diagnosed. a. Did you know when to ask for and where to go for help? b. Did you know much about the disease? c. Did you know who to contact with questions? 2. Looking back on your experience, what do you think would be the most important thing you would want a new caregiver to know? 3. What was the hardest part about being a caregiver (i.e. physical, emotional/mental, lack of social support, etc.)? 4. What was the biggest challenge for you as a caregiver? 5. If you could go back in time, what would you do differently? 6. What would you tell your best friend/someone you know if you could give them advice? 7. Tell me about what a typical day was like for you as a caregiver or an important experience you had. CARING FOR THE CAREGIVERS 46 Appendix B Please rate the following statements using the following scale: 1= Strongly Disagree, 2= Disagree, 3= Neutral, 4= Agree, 5= Strongly Agree 1. I understand the stages of Alzheimers disease and what to expect when caring for my loved one. 2. I know when to ask for help when caring for my loved one with Alzheimers disease. 3. I know where to go for help or who to contact when caring for my loved one with Alzheimers disease. 4. I am aware of safe techniques to use when providing care to my loved one with Alzheimers disease. 5. I know at least 2 effective techniques for increasing my loved ones participation in daily tasks. 6. I feel confident providing care to my loved one with Alzheimers disease. 7. I can recognize at least 2 signs of personal stress as it relates to providing care for my loved one with Alzheimers disease. 8. I know 2 effective stress management strategies to use while providing care to my loved one with Alzheimers disease. 9. I know at least 2 signs of depression as it relates to caregiver burden. 10. I know at least 2 coping strategies to use as it relates to caregiver burden. 11. I know at least 3 community resources that I can access for my own self-care needs and the needs of my loved one. Post-Survey Follow-Up Questions: Please Type Your Answer to the Following Questions. 1. What did you find most helpful about these virtual modules? 2. Would you recommend a similar program to others? 3. How likely would you be to participate in this program again if it was offered virtually? Or if it was offered in person? 4. What other materials or information would you have included in this program, if any? CARING FOR THE CAREGIVERS 47 Appendix C Links to Virtual Educational and Training Videos Administered to Caregivers: Module 1: https://youtu.be/yaE-WabSbm8 (12:10) Module 2: o Transfers: https://youtu.be/waNRYjhbLlA (9:42) o Dressing: https://youtu.be/ywBOyNdqf7w (3:06) o Bathing: https://youtu.be/pLoQdps5YWE (6:17) o Feeding/Eating: https://youtu.be/aVN9N1Rr6LM (5:04) o Medication Management: https://youtu.be/bda0f2U8u2U (6:41) Module 3: https://youtu.be/Et5ixmqrjbU (8:18) Links to Additional Modules Created for Schneck Medical Center: Can be used and adapted to the needs of various populations. o Module 4: https://voicethread.com/share/17078151/ o Module 5: https://voicethread.com/share/17146185/ o Module 6: https://voicethread.com/share/17210725/ Caregivers Guide to Alzheimers: A PDF Resource Given to Participants in the Virtual Education and Training Program Link to PDF via the Internet for download and printing purposes (9 pages total): https://schneckstage.blob.core.windows.net/schneckmedical/medialibraries/schneckmedic al/documents/resource-guide-alz.pdf  ...

... 1 Knowledge and use of shared decision making of occupational therapists in clinical practice: A survey study Abigail Gettinger, Anna Slusser, Tristan Grubbs, Rachel Jones, Hailey Beneker, Jordan Bentley December 15, 2021 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: Penelope Moyers, EdD, OTR, FAOTA Author Note Penelope A. Moyers https://orcid.org/0000-0002-4043-4108 Acknowledgement: Researchers would like to thank Lucinda Dale, EdD, OTR, CHT, FAOTA for her role as research advisor to complete all requirements of OTD 656, including interpreting and reporting results, comparing results to the literature, and completing the writing of the manuscript. Correspondence concerning this article should be addressed to Penelope A. Moyers, 1400 E. Hanna Avenue, Indianapolis, IN 46227. Email: moyers@uindy.edu 2 A Research Project Entitled Knowledge and use of shared decision making of occupational therapists in clinical practice: A survey study 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: Abigail Gettinger, Anna Slusser, Tristan Grubbs, Rachel Jones, Hailey Beneker, Jordan Bentley Doctor of Occupational Therapy Students Approved by: Lucinda Dale, EdD, OTR, CHT, FAOTA Research Advisor 12/17/2021 Date: Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date 3 Abstract Objective: Researchers explored the knowledge, attitudes, and use of shared decision making (SDM), involving occupational therapists and their clients discussing the available evidence and clients preferences throughout occupational therapy (OT). Methods: Researchers analyzed surveys using binomial logistic regressions to identify if age, education, years as an occupational therapist, average hours worked per week, average length of intervention sessions, clients treated, and work setting were predictors of SDM knowledge, attitude, and use. Results: Participants (N = 462) were predominantly female licensed occupational therapists with past or current work experience. Participants most commonly worked in hospitals, skilled nursing, or outpatient facilities, and treated client groups were clients with musculoskeletal and neurological conditions. The models predicting SDM knowledge (2(17) = 49.375, p < .0005), SDM attitude (2(17) = 100.739, p < .0005), and SDM use (2(17) = 120.020, p < .0005) were significant. Occupational therapists treating geriatric clients and clients with developmental disorders had 10.139 and 2.5 times the odds, respectively, to have SDM knowledge. Occupational therapists treating clients with musculoskeletal or developmental disorders, and geriatric clients had 15.358, 14.373, and 14.872 the odds, respectively, to have positive SDM attitudes.SDM use was more likely (19.412 times) during longer treatment sessions and sessions that involved clients with learning disabilities (3.873 times). Conclusion: Researchers found that therapy session length and client condition contributes to the use of SDM. Therapists were more likely to use SDM when they had greater knowledge of and a positive attitude toward SDM. 4 Knowledge and Use of Shared Decision Making of Occupational Therapists in Clinical Practice: A Survey Study Shared decision making (SDM) promotes a collaborative approach between the therapist and the client thereby underlying the concept of occupation-based services. According to the Occupational Therapy Practice Framework: Domain and Process (4th Ed) (American Occupational Therapy Association [AOTA], 2020), the process of occupational therapy (OT) is considered to be the actions practitioners take when providing services that are client-centered and focused on engagement in occupations'' (p. 4). Occupational therapists incorporate therapeutic use of self into interventions for clients to shift the power of the relationship to allow clients more control in decision making and problem-solving, which is essential to effective intervention (p. 20). By doing so, the occupational therapist promotes client-centered practice (CCP), which recognises [sic] the autonomy of individuals, the need for client choice in making decisions about occupational needs, the strengths clients bring to a therapy encounter, the benefits of client-therapist partnership and the need to ensure that services are accessible and fit the context in which a client lives (Law et. al, 1995, p. 253). Within the broader context of healthcare, the Picker/Commonwealth Program for Patient-Centered Care introduced the term, patient-centered care, in 1998 to highlight the need for clinicians to shift their focus from disease and disability to patient and family (Barry & Edgman-Levitan, 2012). The process of SDM became an important aspect of patient-centered care after the passing of the Patient Protection and Affordable Care Act (2010), which described patient-centered care as an outcome and as a means to improve the health of patients (Mroz et al., 2015). Furthermore, the Occupational Therapy Code of Ethics (AOTA, 2015) provided the foundation for SDM in terms of supporting client autonomy where the OT 5 practitioner should establish a collaborative relationship with recipients of service and relevant stakeholders to promote shared decision making (AOTA, 2015, p. 5). The purpose of this study was to measure occupational therapists general knowledge of, attitudes toward, and use of SDM in practice. This information about SDM in OT will contribute to the understanding of occupational therapists knowledge and perceptions of their use of and their attitudes toward SDM, along with the barriers experienced in incorporating SDM in the delivery of intervention for clients. Literature Review Abram et al. (1982) reported the ethical and legal implications in the patientpractitioner relationship and described SDM as informed consent that promotes the well-being and self-determination of the patient. Elwyn et al. (2012) defined SDM as an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options to achieve informed preferences (p. 1361). The term, client-centered practice, is more familiar to OT practitioners. Law et al. (1995) defined client-centered practice as an approach to providing occupational therapy that embraces a philosophy of, respect for, and partnership with, people receiving services (p. 253). In the major documents guiding the practice of OT, the term SDM is often absent with a heavy focus on CCP (American Occupational Therapy Association [AOTA], 2020), or SDM is briefly mentioned in regard to client autonomy (AOTA, 2020). Often CCP is associated with collaborative goal setting, while little guidance is provided for ways to incorporate CCP throughout the OT process (AOTA, 2020). For instance, OT practitioners and nurses often did 6 not acknowledge patient opinion as important to successful rehabilitation outcomes (Lund et al., 2001). Occupational therapists tend to make decisions for clients who are not educated, who do not have knowledge about their specific condition, or who do not have the capacity to understand the safety consequences of decisions (Coutu et al., 2015; Delany & Galvin, 2014). Peoples et al. (2011) suggested that finding a balance between client autonomy and therapist supervision may increase patient satisfaction rather than adopting a solely client-led or therapist-led approach to SDM. Yun and Choi (2019) found little evidence concerning positive functional effects of person-centered care in their systematic review. Likewise, a SDM study in medicine found patient satisfaction improved, but health outcomes such as medication adherence, ratings of overall health, and quality of life showed no improvement (Shay & Lafata, 2015). Lovell et al. (2018) found that embedding SDM into the work of community practice teams in mental health had no significant effect on patient outcomes. Consequently, SDM processes most likely require modification to develop specific mechanisms leading to better health outcomes. Similar to SDM, questions are being raised about the effect on client outcomes and the efficiency of client-centered OT. Client-centered therapy was not recommended as a result of no difference in outcomes in comparison to usual and customary OT; however, intervention was not fully described and could have been similar to client-centered OT (Eyssen et al., 2013; Eyssen et al., 2014; Guidetti et al., 2015). These studies found that using client-centered therapy led to a focus on indirect goals and more time spent in therapy. It was confusing that the rehabilitation literature focused on patient-centered care instead of client-centered care (Yun & Choi, 2019). According to the National Quality Forum (2014), the components of patient-centered care 7 included concepts similar to client-centered care with additional concepts such as collaboration among health professionals and is coordinated across settings and time (p. 2). Current SDM literature has predominantly focused on physicians and their patients rather than on the practices of other healthcare professionals. Resources and tools for SDM in OT are also limited and not targeted to typical decisions made in OT (Delany & Galvin, 2014). The SDM tools available to multiple healthcare professions did not address challenges such as lack of client/caregiver SDM education, health literacy issues, or ethical concerns of the communication process used in SDM. The available options for SDM resources and tools for multiple professions also may not be conducive to the distinctiveness of CCP in OT, thereby contributing to the reluctance of occupational therapists to use these tools (Delany & Galvin, 2014). Further research is needed to determine the efficacy of SDM tools within OT. For instance, Murphy and Oliver (2013) in their use of Talking Mats for a population with dementia indicated that the use of SDM tools increased client ability to make decisions and communicate with caregivers and family. Another key issue underlying a comprehensive SDM approach was that the OT literature was narrowly focused on collaborative goal setting with little emphasis on the SDM that occurred throughout the entire OT process. This included intervention selection and implementation, plan modification, and discharge planning. One exception to this was Krishnan et al. (2019) who explored the inclusion of clients recovering from a stroke during discharge planning for rehabilitation. Despite the lack of clarity regarding disciplines, Krishnan et al. (2019) discovered that many clients reported a lack of inclusion when selecting a post-acute care provider or setting goals for transitioning. Even though OT has a rich philosophical tradition of collaborative goal setting with 8 clients, limited research was available. According to Vermunt et al. (2019), general practitioners and clinical geriatricians in medicine had not yet recognized goal setting as necessary for older adults with complex conditions. In contrast, OT for stroke rehabilitation was strongly connected to collaborative goal setting (Flink et al., 2016), which may be an exception as Rose et al. (2019) concluded that patient-centered goal setting in rehabilitation settings was not often practiced. Occupational therapists who routinely used collaborative goal setting could guide the development of specific goal-setting protocols for interprofessional care teams. The OT process lacks SDM integration as a well-researched approach to client-centered care and a clearly articulated aspect of evidence-based practice (Moore & Kaplan, 2018). Furthermore, there is a gap in the literature regarding the specific ways to apply SDM in clinical practice as well as SDM tools for those whose participation is limited. Researchers aimed to understand OTs general knowledge of, attitudes towards, and use of SDM in practice. In doing so, researchers hope to further understand predictors and barriers to SDM within the OT process and scope of practice. Methods Study Design Researchers used a descriptive cross-sectional design using survey methodology. Participants Participants included licensed occupational therapists. Exclusion criteria included OT assistants and students due to differences in training, as well as occupational therapists without professional practice experience. These groups were excluded from the study in order to gather data from occupational therapists who have practiced or were currently practicing. Materials/Measures 9 This survey was designed to gather data for a population of occupational therapists throughout the United States with a focus on the Midwest. The researchers electronically distributed a multipart SDM survey (Topp et. al., 2018) that included knowledge of SDM, beliefs, and use of SDM per client population, barriers of SDM, the Shared Decision Making Questionnaire, physician version (SDM-Q-Doc) (Harter & Scholl, 2012), and the Control Preference Scale (CPS) for decision making (Degner & Sloan, 1992). With permission via email from Topp and Scholl (J. Topp & I. Scholl, personal communication, February 12, 2020), the SDM-Q-doc (Harter & Scholl, 2012) was modified to be more consistent with OT, include the client populations typical of OT, modify the demographic questions to fit the United States, and include occupational therapists who were practicing at the time of the study or had practiced in the past. The demographics section determined whether the participant was a licensed occupational therapist so that all other participants were excluded, while also gathering age, gender, state in which a therapist was employed, the number of years the therapist had worked, hours worked per week, and length of treatment sessions. The survey was designed using Qualtrics and consisted of 61 questions including Likert scale, multiple-choice, and open-ended questions. SDM knowledge was rated on a single-item Likert scale with 1 indicating I dont know anything about the concept and 10 indicating I have comprehensive knowledge on the concept. Use of SDM was rated on a multi-item Likert scale with 1 indicating completely disagree to 6 indicating completely agree, and 7 indicating I do not treat this client group. Attitude toward SDM and barriers to SDM use were rated on two separate Likert scales with 1 indicating completely disagree and 6 indicating completely agree. 10 In a study of SDM in oncology practice, Calderon et al. (2017) established that the SDMQ-Doc had good psychometric properties and could be used as a tool to understand knowledge, attitudes, and use of SDM by physicians. The CPS evaluated clients preferred roles in relation to their treatments. When examining the CPS in a mental health setting with clients with emotional disorders, the CPS showed validity in measuring the amount of control psychiatric outpatients wanted during their care (De las Cuevas & Penate, 2016). There are no normative data available for the CPS. IRB Approval Researchers submitted a proposal for this study to the Institutional Review Board of a Midwestern University and received approval to conduct the study. Procedures Recruitment and Enrollment Participants were recruited by distributing the survey to a randomized list of occupational therapists from the Ohio state licensure board; members of Indiana Occupational Therapy Association, Illinois Occupational Therapy Association, Texas Occupational Therapy Association, and South Dakota Occupational Therapy Association; the North Dakota State Licensure Board; on the Kentucky Occupational Therapy Association research page; on the American Occupational Therapy Association CommunOT forum for research and surveys; and via links on the Iowa Occupational Therapy Association and Tennessee Occupational Therapy Association Facebook group pages. The authors of the current study also recruited participants from 21 OT Instagram accounts by distributing graphics with links to the survey. Additionally, researchers surveyed Midwestern University OT faculty and distributed the survey to a 11 randomized list of Midwestern University OT alumni. Those with multiple memberships were surveyed only once. Researchers used the formula (n = 100 + 50 [i]), where i refers to the number of independent variables, (n = 100 + 50 (13)) to determine that the minimum required sample size required for logistic regression would be 975 (Bujang et al., 2018). The average survey completion rate expected based on number and type of questions was approximately 79% (Survey Monkey, 2020). Taking into consideration this drop out rate, authors determined that the required sample size would be approximately 1180. The following criteria were used to estimate the sample size: the margin of error was set at 5%; the power level was set at 80% (Kielhofner & Taylor, 2017, p. 173); and the proportion of having SDM knowledge to having little SDM knowledge was conservatively estimated to be 55% versus 45%. This resulted in a suggested sample size of 619, with a minimum of 500 as recommended by Bujang et al. (2018) for logistic regression. Informed Consent All participants filled out an informed consent embedded at the beginning of the survey within the same link prior to accessing the remainder of the survey which they were invited to then complete as a way to provide consent (see Appendix A). Those who did not consent to completing the survey were exited from the link. Data Collection Data collection was conducted from September 15, 2020 to December 27, 2020. The researchers electronically distributed a multipart SDM survey, including informed consent, via hyperlink through email (Topp et al., 2018). Data were collected through Qualtrics and surveys had to be completed once opened and could be neither saved nor accessed again. The researchers 12 discussed the nature of survey studies and the potential for low response rates prior to the surveys distribution and decided to address this through the usage of reminders and incentivization (Kielhofner & Taylor, 2017, pp. 389-390). After distributing the survey link, the reminders were sent to potential participants advising them to open the link, complete the informed consent, and survey. These were sent on October 1, 2020, and again two weeks before the deadline, to those who had been sent the survey link. The researchers also awarded a $10 Starbucks gift card once every two weeks through a random drawing of those who had completed the survey. All members of this research team were responsible for distributing the survey. The principal investigator and three research team members were responsible for analyzing the collected data. Qualtrics-generated URL addresses served as participant identifiers. To protect confidentiality, one research team member was responsible for entering the survey through Qualtrics and removing the URL address from the contact list when a response from each email was obtained in order to prevent dual survey submissions. The ability to access the provided survey link once also prevented dual submission. Implementation of this strategy avoided any duplication of surveys and ensured that awareness of participant identity was limited to a single research team member. Data Analysis The researchers used Statistical Package for the Social Sciences 27 (International Business Machines Corporation, 2020) to analyze the data. Demographic data were analyzed using descriptive statistics including frequencies, percentages, means, standard deviation (SD), and range. Prior to data analysis, the following variables were recoded: SDM use, SDM attitude, SDM knowledge, type of professional training, and work setting. SDM knowledge, scores of 1-3 13 were recoded to 0, and scores of 4-10 were recoded to 1. These two new scales of 0 and 1 indicated two categories (0 = little to no SDM knowledge and 1 = some to comprehensive knowledge of SDM). SDM use and attitude were recoded to dichotomous variables, passive and collaborative. SDM knowledge was recoded to no knowledge and some knowledge. Type of professional training was recoded to undergraduate and graduate. Work setting was recoded to hospital and not hospital. Recoding of variables was completed to meet assumption number 1 of the mixed logistic regression. Questions 3 and 5 of the survey were converted to a scale of 1 to 5 in order for researchers to conduct the Wilcoxon Signed-Rank Test. A Wilcoxon Signed-Rank Test was conducted to compare the reported attitudes on SDM to the reported use of SDM. Three mixed logistic regressions predicted SDM knowledge, SDM attitude, and SDM use. Logistic regression 1, 2, and 3 ascertained the effects on SDM knowledge using the continuous predictors of age, years in practice as an OT, hours worked per week, and the average length of the treatment sessions. The categorical predictors of SDM knowledge for logistic regression 1, 2, and 3 included: attitude toward SDM, use of SDM, education, worksite, and whether treating clients with musculoskeletal conditions, neurological disorders, cardiovascular disorders, pediatric clients, geriatric clients, wellness clients, mental disorders, client with developmental disorders (DD), and learning disorders. Results After excluding surveys that were less than 80% complete 462 surveys were used for data analysis. Researchers used multiple imputation methods to replace the 18% of missing values for the variables needed for the logistic regression analyses. Due to the decision to include surveys with 80% completion, the demographic data related to gender, age, and education showed a lower number of total participants. Demographics such as practice 14 settings showed a higher total number of participants due to participants being allowed to select multiple practice settings and multiple client groups (see Table 1). The majority of the participants were female and predominantly had an entry-level masters degree. The mean age was 42.48 (SD = 11.00). Participants most commonly worked in a hospital setting and the remaining participants worked in non-hospital settings such as a skilled nursing facility or an outpatient clinic. The most commonly treated client groups were clients with musculoskeletal conditions (N = 258) and neurological disorders (N = 257). The mean for the number of years of professional experience was 16.80 (SD = 10.57). The mean number of hours of work per week was 35.18 (SD = 7.85). The average length of treatment in minutes was 49.29 (SD = 14.40) (see Table 1). The median of the Likert scale regarding SDM knowledge was 5.00 (SD = 2.69) meaning the majority of participants had some knowledge of SDM and 164 (35.4%) participants answered that they had no knowledge about SDM. The mean of SDM attitudes is 2.99 (SD = 0.51) meaning an average number of participants made the treatment decisions together with their client. The mean of SDM use was 2.55 (SD = 0.61) demonstrating the average participant made the treatment decision on their own after considering the clients opinion. A Wilcoxon Signed-Rank Test was conducted to evaluate whether participants had greater SDM attitudes or SDM use. The results indicated a significant difference based on positive ranks, (z = -12.57, p < .001). The positive mean rank that showed SDM use was greater than SDM attitude was 106.90, compared to the negative mean rank that showed SDM attitude was greater than SDM use was 104.38. The majority of participants (N = 254) viewed SDM use the same as SDM attitude. 15 As shown in Figure 1, the difference between participants SDM attitudes and actual use of SDM determined 56 participants demonstrated passive attitude and passive use of SDM in practice; five participants demonstrated passive attitude but collaborative use of SDM in practice; 159 participants demonstrated a collaborative attitude but passive use of SDM in practice; and 240 participants demonstrated collaborative attitude and collaborative use of SDM in practice (see Fig. 1). There was a significant difference between SDM attitudes and SDM use (z = -12.57; p < 0.0001) based on the CPS. Results regarding SDM attitudes and SDM use in different client groups and a more detailed view on the use of SDM based on the adapted SDMQ-Doc are presented in Appendix B (see Table B.1 and B.2). Three binomial mixed logistic regressions were conducted to determine which variable was a significant predictor of SDM knowledge, SDM attitudes, and SDM use. To reduce the number of outliers in the logistic regression and to normalize the variables, the continuous predictors were transformed using a Log10 transformation (Hilbe, 2015). After transformation, there were eight outlier cases removed leaving standardized residual values of cases in the analysis. Linearity of the Log10 transformed continuous variables with respect to the logit of the dependent variable was assessed via the Box-Tidwell (1962) procedure. A Bonferroni correction was applied using 18 terms including the constant in the model resulting in statistical significance being accepted when (p < .00277) (Tabachnick & Fidell, 2014). Based on this assessment, all continuous independent variables were found to be linearly related to the logit of the dependent variable. The data showed no multicollinearity, therefore, all assumptions were met for the following three binomial mixed logistic regressions. Logistic regression 1 ascertained the effects on SDM knowledge using the continuous predictors of age, years in practice as an OT, hours worked per week, and average length of the 16 treatment sessions. The categorical predictors of SDM knowledge included: attitude toward SDM, use of SDM, education, worksite, and whether treating pediatric, geriatric or wellness clients, and clients with DD, musculoskeletal conditions, neurological disorders, cardiovascular disorders, mental disorders and learning disorders. Logistic regression 1 was statistically significant, ((17) = 49.38, p < .0005). The Hosmer-Lemeshow test yielded ((8) = 5.42, p = .712), indicating the model was a good fit. The model explained 21.8% (Nagelkerkes R2) of the variance in SDM knowledge and correctly classified 75.6% of cases. Sensitivity was 93.6%, specificity was 19.7%, positive predictive value was 78%, and negative predictive value was 50%. Of the 17 predictor variables, four were statistically significant (see Table 2). Occupational therapists treating geriatric clients had 10.14 times higher odds to have SDM knowledge than occupational therapists who were not treating geriatric clients. Occupational therapists who treated cardiovascular clients were 0.37 times more likely to have SDM knowledge than occupational therapists who were not treating cardiovascular clients. Those occupational therapists treating clients with DD had 2.52 times the odds to have SDM knowledge than occupational therapists who were not treating this type of client. The area under the ROC curve was .757, 95% CI, [.70 to .82], which is an acceptable level of discrimination according to Hosmer et al. (2013). Logistic regression 2 ascertained the effects on SDM attitude using the continuous predictors of age, years in practice as an OT, hours worked per week, and average length of the treatment sessions. The categorical predictors of SDM attitude included: SDM knowledge, use of SDM, education, worksite, and whether treating pediatric, geriatric or wellness clients, and clients with DD, musculoskeletal conditions, neurological disorders, cardiovascular disorders, mental disorders and learning disorders. 17 The logistic regression model was statistically significant, ((17) = 100.74, p < .0005). The Hosmer-Lemeshow test yielded ((8) = 1.72, p = .988), indicating the model was a good fit. The model explained 55.4% (Nagelkerkes R2) of the variance in SDM attitude and correctly classified 91.7% of cases. Sensitivity was 97.8%, specificity was 41.2%, positive predictive value was 93% and negative predictive value was 70%. Of the 17 predictor variables, six were statistically significant (see Table 3). Occupational therapists treating clients with musculoskeletal conditions had 15.36 times higher odds to have a more positive SDM attitude than occupational therapists who were not treating this type of client. Those occupational therapists treating geriatric clients had 14.37 times the odds to have a positive SDM attitude than occupational therapists who were not treating geriatric clients. Those occupational therapists treating clients with DD had 14.87 times the odds to have a positive SDM attitude than occupational therapists who were not treating this type of client. The area under the ROC curve was .926, 95% CI, [.89 to .96], which is an outstanding level of discrimination according to Hosmer et al. (2013). Logistic regression 3 ascertained the effects on SDM use using the continuous predictors of age, years in practice as an OT, hours worked per week, and average length of the treatment sessions. The categorical predictors of SDM use included: SDM knowledge, SDM attitude, education, worksite, and whether treating pediatric, geriatric or wellness clients, and clients with DD, musculoskeletal conditions, neurological disorders, cardiovascular disorders, mental disorders and learning disorders. The logistic regression model was statistically significant, ((17) = 120.02, p < .0005). The Hosmer-Lemeshow test yielded, ((8) = 9.18, p = .328), indicating the model was a good fit. The model explained 42.7% (Nagelkerkes R2) of the variance in SDM use and correctly 18 classified 71.8% of cases. Sensitivity was 83.1%, specificity was 57.9%, positive predictive value was 70% and negative predictive value was 73%. Of the 17 predictor variables, four were statistically significant (see Table 4). Occupational therapists treating clients in longer treatment sessions had 19.41 times higher odds to use SDM than occupational therapists who provided shorter treatment sessions. Those occupational therapists treating clients with learning disabilities had 3.87 times the odds to use SDM than occupational therapists who were not treating clients with learning disorders. The area under the ROC curve was .82, 95% CI, [.78 to .87], which was an excellent level of discrimination according to Hosmer et al. (2013). Participants reported time constraints, client knowledge of diagnosis, and client participation as the most common barriers to SDM use in OT (see Table 5). Discussion After an examination of the literature, the authors of the current study identified a gap in research addressing SDM knowledge, attitudes, and use in OT practice. Several researchers in published literature have examined the client-centered approach.This study is the first of its kind, so no direct comparisons can be made, but the results indirectly reflect concepts highlighted and provide implications for future practice. Hansen et al. (2017) found that a collaborative approach between the occupational therapist and client increased client satisfaction and performance. Eyssen et al. (2013) examined the quality of therapy following client-centered interventions. Because the current study focused on the perspectives of the occupational therapists, not the clients, no direct comparisons of the findings can be made to Hansen et al. (2017) and Eyssen et al. (2013). In the current study, some survey questions sought therapists' views on decision-making with clients that could reflect therapists' perceptions of clients' satisfaction with SDM. It could be that clients were more 19 satisfied with this method of making decisions, but no direct comparisons can be made. Researchers in the current study discovered there were greater odds of occupational therapists using SDM when sessions were longer. Similarly, one of the predictors for SDM use reported by Coutu et al. (2015) was session length. However, different from the current study, therapists received training prior to SDM use in the study by Coutu et al. (2015). In addition, therapists in Delaney & Galvins (2014) study believed that they needed increased time to develop rapport and understanding with parents of pediatric clients. Eyssen et al. (2014) also found that the time needed to develop an initial treatment goal was longer during client-centered therapy. Maitra & Erway (2006) interviewed clients who reported they were not aware of the client-centered approach. The researchers examined the influence that the practice setting of the occupational therapist providing client services had on the clients knowledge of SDM. Maitra & Erways (2006) results indicated that different levels of SDM knowledge were reported by clients receiving OT services in different practice settings. Although authors in the current study did not examine client knowledge of SDM, surveyed occupational therapists working with geriatric clients, clients with cardiovascular disorders, and clients with DD reported greater knowledge of SDM. An occupational therapists knowledge of SDM may vary when working with different client populations and in different settings. Although Maitra & Erway (2006) used the term CCP throughout their study, their definitions more accurately aligned with Elwyn et al.s (2012) definition of SDM as an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options to achieve informed preferences (p. 1361). Durocher et al. (2015) examined client-centered care and found that occupational 20 therapists considered older clients preferences during treatment only when they deemed these preferences to be safe. Nagayama et al. (2016) also studied older clients, finding that using a SDM tool with geriatric clients led to better outcomes, measured as scores on the Barthel Index. Although the focus of the current study was not on the use of a SDM tool, researchers found that treating geriatric clients was a significant predictor of knowledge, attitudes, and use of SDM. The authors of the current study did not examine the reasoning for increased use of SDM within the geriatric client population, but the results indicate that SDM may be more easily used with geriatric clients. Vroland-Nordstrand et al. (2015) found that there was an increase in goal attainment when using an SDM tool with pediatric clients and their families. Although goal setting or goal attainment were not specified in the survey of the current study, it could be that respondents considered goals when rating their level of agreement with how intervention decisions are made. It is possible that therapists in the study conducted by Vroland-Nordstrand et al. (2015) had prior knowledge of or training on the SDM tools they used. Additional training or education on SDM was not provided in the current study but could improve SDM knowledge, attitudes, and use in future practice. Similar to Vroland-Norstrand et al. (2015), Kolehmainen et al. (2012) found that allowing parents and children in school settings to participate in goal-setting led to improved therapists' clinical reasoning, interactions with families and teachers, and clarity in service provision. Participation in goal-setting also reduced the duration of therapy by two months. In contrast, parents in Egilsons (2011) study indicate a lack of inclusion in decision making for their children and a lack of information provided about goals. Researchers in the current study did not focus on the benefits of SDM and found no significant results about use, knowledge, and attitudes towards SDM with pediatric clients. Delany & Galvin (2014) found 21 that occupational therapists in pediatrics have a lack of knowledge on how to appropriately approach SDM with parents and caregivers. The lack of occupational therapist knowledge about SDM use with pediatric clients and families may lead to a lack of inclusion when creating goals. Flink et al. (2016) concluded that therapists were more likely to include clients in goal-setting, and goal attainment strategies after receiving training on client-centered ADL rehabilitation, which aligns with SDM. Researchers in the current study did not address goal-setting and specific practice facilities but found varying use of SDM in different client populations, which can explain the difference in client knowledge of SDM within different settings. Through interviews with clients in neurological rehabilitation facilities, Van de Velde et al. (2016) found that therapists did not corroborate a client-centered approach. Occupational therapists were more focused on short-term recovery from neurological impairments but interviewed clients who wanted to focus on long-term recovery. In contrast, occupational therapists in the current study were utilizing SDM with clients with neurological disorders. Tam-Seto & Versnel (2015) noted that therapists were more likely to involve clients when decisions were low-risk but were less likely to involve clients when decisions were high risk. In the 2015 study, the perceived risk influenced therapists use of SDM, however, in the current study a therapists attitude toward SDM influenced their use of SDM. Therapists surveyed in the current study were more likely to have a collaborative use of SDM if they had a collaborative attitude toward SDM. Therapists were more likely to have a passive use of SDM if they had a passive attitude toward SDM. Clients and providers interviewed as part of Manhas et al.s (2020) study identified six common barriers to SDM: geography, messaging, organization, client characteristics, provider characteristics, and time. The providers reported two additional barriers: appointment types and 22 training. The clients interviewed identified different additional barriers: choices, power, and deference. Similarly, Mshanga et al. (2019) also identified time as a barrier to SDM. However, they also identified CCP demands and differentiating goals as barriers. Researchers of the current study also found lack of time to be a barrier to SDM. The authors further identified lack of client knowledge and decreased participation as additional barriers. Limitations of the current study included a smaller than desired sample size and incomplete surveys. Other limitations of this study included the use of social media for data collection and the observed limited time for data collection. Due to COVID -19 restrictions, inperson surveys were changed to online survey collections which included social media and email distributions. These restrictions further limited survey and data completion. Conclusion SDM promotes a collaborative approach between the therapist and the client and therefore is beneficial to OT practice. Importantly therapists were more likely to implement SDM strategies when they had greater knowledge of and a positive attitude toward SDM. Occupational therapists working with the geriatric population were more likely to utilize SDM strategies than occupational therapists working with other client populations. Practitioners were more likely to implement SDM in longer treatment sessions. 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A cluster randomised control trial on the efficacy of clientcentred occupational therapy in multiple sclerosis: Good process, poor outcome. Disability and Rehabilitation, 35(19), 1636-1646. https://doi.org/10.3109/09638288.2012.748845 Flink, M., Bertilsson, A.-S., Johansson, U., Guidetti, S., Tham, K., & von Koch, L. (2016). Training in client-centeredness enhances occupational therapist documentation on goal setting and client participation in goal setting in the medical records of people with stroke. Clinical Rehabilitation, 30(12), 12001210. https://doi.org/10.1177%2F0269215515620256 Guidetti, S., Ranner, M., Tham, K., Andersson, M., Ytterberg, C., & von Koch, L. (2015). A client-centered activities of daily living intervention for persons with stroke: One-year 26 follow-up of a randomized control trial. Journal of Rehabilitation Medicine, 47(7), 605611. https://doi.org/10.2340/16501977-1981 Hansen, A., Boll, M., Lisbeth, M., Sgarrd, K., & Kristensen, H. (2017). Novel occupational therapy intervention in the early rehabilitation of patients with brain tumours. British Journal of Occupational Therapy, 80(10), 603-607. https://doi.org/10.1177%2F0308022617714165 Harter, M., & Scholl, I. (2012). The 9-item shared decision making questionnaire (SDM-Q-Doc, physician version). http://www.patient-als-partner.de/media/sdm-qdoc_english_version.pdf Hilbe, J. M. (2015). Practical guide to logistic regression. CRC Press. Hosmer, D. W., Jr., Lemeshow, S., & Sturdivant, R. X. (2013). Applied logistic regression (3rd ed.). Hoboken, NJ: Wiley. (scales for ROC curves). International Business Machines Corporation Released 2020. IBM SPSS Statistics for Windows, (Version 27.0) [Computer software]. IBM Corp. Kielhofner, G. & Taylor R. (2017). Research in occupational therapy: Methods of inquiry for enhancing practice (2nd ed.). F.A. Davis Company. Kolehmainen, N., Maclennan, G., Ternent, L., Duncan, E. A., Duncan, E. M., Ryan, S. B., McKee, L., & Francis, J. J. (2012). Using shared goal setting to improve access and equity: A mixed methods study of the Good Goals intervention in childrens occupational therapy. Implementation Science, 7(76). https://doi.org/10.1186/1748-5908-7-76 Krishnan, S., Hay, C. C., Pappadis, M. R., Deutsch, A., & Reistetter, T. A. (2019). Stroke survivors perspectives on postacute rehabilitation options, goals, satisfaction, and 27 transition to home. Journal of Neurologic Physical Therapy, 43(3), 160167. https://doi.org/10.1097/NPT.0000000000000281 Law, M., Baptiste, S., & Mills, J. (1995). Client-centred practice: What does it mean and does it make a difference? Canadian Journal of Occupational Therapy, 62(5), 250257. https://doi.org/10.1177/000841749506200504 Lovell, K., Bee, P., Brooks, H., Cahoon, P., Callaghan, P., Carter, L.-A., Cree, L., Davies, L., Drake, R., Fraser, C., Gibbons, C., Grundy, A., Hinsliff-Smith, K., Meade, O., Roberts, C., Rogers, A., Rushton, K., Sanders, C., Shields, G., ... L., Bower, P. (2018). Embedding shared decision-making in the care of patients with severe and enduring mental health problems: The EQUIP pragmatic cluster randomized trial. PLoS ONE 13(8), e0201533. https://doi.org/10.1371/journal.pone.0201533 Lund, M. L., Tamm, M., & Brnholm, I.-B. (2001). Patients perceptions of their participation in rehabilitation planning and professionals view of their strategies to encourage it. Occupational Therapy International, 8(3), 151167. https://doi.org/10.1002/oti.143 Maitra, K. K., & Erway, F. (2006). Perceptions of client-centered practice in occupational therapists and their clients. American Journal of Occupational Therapy, 60(3), 298-310. https://doi.org/10.5014/ajot.60.3.298 Manhas, K. P., Olson, K., Churchill, K., & Vohra, S. (2020). Experiences of shared decisionmaking in community rehabilitation: A focused ethnography. BMC Health Services Research, 20(329). https://doi.org/10.1186/s12913-020-05223-4 Moore, C. L., & Kaplan, S. L. (2018). A framework and resources for shared decision making: Opportunities for improved physical therapy outcomes. Physical Therapy & Rehabilitation Journal, 98(12). https://doi.org/10.1093/ptj/pzy095 28 Mroz, T. M., Pitonyak, J. S., Fogelberg, D., & Leland, N. E. (2015). Client centeredness and health reform: Key issues for occupational therapy. American Journal of Occupational Therapy, 69(5), 6905090010p16905090010p8. https://doi.org/10.5014/ajot.2015.695001 Mshanga, D., Duncan, E. M., & Buchanan, H. (2019). Occupational therapists perspectives on the implementation of client-centred practice in tanzania. British Journal of Occupational Therapy, 82(12), 732-742. https://doi.org/10.1177/0308022619858859 Murphy, J., & Oliver, T. (2013). The use of talking mats to support people with dementia and their carers to make decisions together. Health & Social Care in the Community, 21(2), 171180. https://doi.org/10.1111/hsc.12005 Nagayama, H., Tomori, K., Ohno, K., Takahashi, K., Ogahara, K., Sawada, T., Uezu, S., Nagatani, R., & Yamauchi, K. (2016). Effectiveness and cost-effectiveness of occupation-based occupational therapy using the Aid for Decision Making in Occupation Choice (ADOC) for older residents: Pilot cluster randomized controlled trial. PLoS ONE, 11(3), 113. https://doi.org/10.1371/journal.pone.0150374 National Quality Forum. (2014). Priority setting for healthcare performance measurement: Addressing performance measure gaps in person-centered care and outcomes, 191. https://www.qualityforum.org/Publications/2014/08/Priority_Setting_for_Healthcare_Per formance_Measurement__Addressing_Performance_Measure_Gaps_in_PersonCentered_Care_and_Outcomes.aspx Patient Protection and Affordable Care Act, 42 U.S.C. 18001 (2010). https://www.hhs.gov/sites/default/files/ppacacon.pdf 29 Peoples, H., Satink, T., & Steultjens, E. (2011). Stroke survivors experiences of rehabilitation: A systematic review of qualitative studies. Scandinavian Journal of Occupational Therapy, 18(3), 163171. https://doi.org/10.3109/11038128.2010.509887 Rose, A., Soundy, A., & Rosewilliam, S. (2019). Shared decision-making within goal-setting in rehabilitation: A mixed-methods study. Clinical Rehabilitation, 33(3), 564574. https://doi.org/10.1177/0269215518815251 Shay, L. A., & Lafata, J. E. (2015). Where is the evidence? A systematic review of shared decision making and patient outcomes. Medical Decision Making, 35(1), 114131. https://doi.org/10.1177/0272989X14551638 Survey Monkey. (2020). Tips for increasing survey completion rates. https://www.surveymonkey.com/mp/tips-increasing-survey-completion-rates/ Tabachnick, B. G., & Fidell, L. S. (2014). Using multivariate statistics (6th ed.). Pearson. Tam-Seto, L., & Versnel, J. (2015). Occupational therapy shared decision making in adolescent mental health. Occupational Therapy in Mental Health, 31(2), 168-186. https://doi.org/10.1080/0164212X.2015.1036194 Topp, J., Westenhofer, J., Scholl, I., & Hahlweg, P. (2018). Shared decision-making in physical therapy: A cross-sectional study on physiotherapists knowledge, attitudes and selfreported use. Patient Education and Counseling, 101(2), 346-351. http://dx.doi.org/10.1016/j.pec.2017.07.031 Van de Velde, D., Devisch, I., & De Vriendt, P. (2016). The client-centred approach as experienced by male neurological rehabilitation clients in occupational therapy. A qualitative study based on a grounded theory tradition. Disability and Rehabilitation, 38(16), 15671577. https://doi.org/10.3109/09638288.2015.1107628 30 Vermunt, N., Elwyn, G., Westert, G., Harmsen, M., Rikkert, M. O., & Meinders, M. (2019). Goal setting is insufficiently recognised as an essential part of shared decision-making in the complex care of older patients: A framework analysis. BMC Family Practice, 20(76), 1-12. https://doi.org/10.1186/s12875-019-0966-z Vroland-Nordstrand, K., Eliasson, A. C., Jacobsson, H., Johansson, U., & Krumlinde-Sundholm, L. (2015). Can children identify and achieve goals for intervention? A randomized trial comparing two goal-setting approaches. Developmental Medicine & Child Neurology, 58(6), 589596. https://doi.org/10.1111/dmcn.12925 Yun, D., & Choi, J. (2019). Person-centered rehabilitation care and outcomes: A systematic literature review. International Journal of Nursing Studies, 93, 7483. https://doi.org/10.1016/j.ijnurstu.2019.02.012 31 Table 1 Demographic characteristics of the study participants. Variables Frequencies % Mean (SD, range) Sex Female 267 94.3 Male 16 5.7 Age 42.48 (11.001, 24 73) Highest degree Bachelor entry-level 74 21.6 Masters entry-level 130 39.0 Masters post-professional 61 18.3 Clinical doctorate entry-level 26 7.8 Clinical doctorate post-professional 19 5.7 PhD or EdD 9 2.7 Other 16 4.8 Work setting Private practice 41 8.9 Outpatient clinic 105 22.7 Home health 71 15.4 Hospital 129 27.9 Rehabilitation center 85 18.4 School 80 17.3 Long-term care/Skilled nursing facility 93 20.1 Other 35 7.6 Client groups treated Clients with musculoskeletal conditions 258 77.9 Clients with neurological disorders 257 77.6 Clients with mental disorders 174 52.6 Clients with cardiovascular disorders 176 53.2 Pediatric clients 131 39.6 Geriatric clients 195 59.1 Wellness clients 46 13.9 Clients with developmental disorders 161 48.6 Clients with learning disorders 132 39.9 Length of professional experience (in years) 16.803 (10.57, 0.5 52) Working hours per week 35.18 (7.853, 4 64) Average length of treatment in unit (minutes) 49.29 (14.403, 15 120) Note. Surveys in this study required 80% completion for inclusion which resulted in the demographic data related to gender, age, and education showing a lower number of total participants. 32 Table 2 Results of the mixed logistic regression model predicting knowledge on SDM (N = 462). Variables Step 1 Length of professional experience (in years) Working hours per week OR (95% CI) 0.276 (0.062 1.224) 0.678 (0.086 5.318) p 0.09 7.552 (0.935 60.999) 0.058 0.072 0.711 Average length of a treatment session (in min.) Type of professional training Undergraduate (reference) Graduate Work setting Hospital Not hospital (reference) Treating clients with musculoskeletal conditionsa Treating clients with neurological disordersa Treating clients with mental disordersa Treating clients with cardiovascular disordersa Treating pediatric clientsa Treating geriatric clientsa Treating wellness clientsa Treating clients with developmental disordersa Treating clients with learning disordersa Attitudes towards SDM Passive (reference) Collaborative Use of SDM Passive (reference) Collaborative Nagelkerkes R2 Hosmer-Lemeshow test 0.507 (0.242 1.061) 0.641 (0.340 1.209) 0.170 0.888 (0.302 2.614) 1.618 (0.535 4.896) 0.770 (0.388 1.528) 0.371 (0.154 0.893) 0.850 (0.324 2.227) 10.139 (3.287 31.269) 0.475 (0.170 1.323) 2.520 (1.085 5.851) 0.588 (0.215 1.611) 0.830 0.394 0.455 0.027 0.741 <0.001 0.154 0.032 0.302 1.157 (0.429 3.116) 0.773 0.393 (0.198 0.779) 0.007 0.218 p = 0.712 Note. Outcome variable: Knowledge (0 = no knowledge on SDM; 1 = knowledge on SDM); Bold typeface indicates significant results on a level of p < 0.05; OR = Odds ratio; CI = Confidence Interval. a Dichotomous variables with yes/no, no is the reference group. 33 Table 3 Results of the mixed logistic regression model predicting attitudes towards SDM (N = 462). Variables Step 1 OR (95% CI) p Length of professional experience (in years) 3.929 (0.607 25.454) 0.151 Working hours per week Average length of a treatment session (in min.) Type of professional training Undergraduate (reference) Graduate Work setting Hospital Not hospital (reference) Treating clients with musculoskeletal conditionsa Treating clients with neurological disordersa Treating clients with mental disordersa Treating clients with cardiovascular disordersa Treating pediatric clientsa Treating geriatric clientsa Treating wellness clientsa Treating clients with developmental disordersa Treating clients with learning disordersa Knowledge on SDM No knowledge (reference) Some knowledge Use of SDM Passive (reference) Collaborative Nagelkerkes R2 Hosmer-Lemeshow test 0.005 (0.000 0.628) 1.218 (0.040 37.080) 0.032 0.910 0.571 (0.121 2.699) 0.479 2.746 (0.855 8.815) 0.090 15.358 (2.281 103.398) 0.043 (0.005 0.359) 1.332 (0.401 4.425) 0.282 (0.047 1.711) 4.469 (0.796 25.081) 14.374 (1.979 104.391) 0.247 (0.029 2.066) 14.872 (2.756 80.246) 0.145 (0.026 0.791) 0.005 0.004 0.640 0.169 0.089 0.008 0.197 0.002 0.026 0.952 (0.302 3.005) 0.933 0.000** 0.554 p = 0.988 0.993 Note. Outcome variable: Attitudes towards SDM (0 = passive approach; 1 = collaborative approach); Bold typeface indicates significant results on a level of p < 0.05; OR = Odds ratio; CI = Confidence Interval. a Dichotomous variables with yes/no, no is the reference group. **for SDM use, the odds were infinitesimal, and the predictor was not significant. 34 Table 4 Results of the mixed logistic regression model predicting self-reported use of SDM (N = 462). Variables Step 1 OR (95% CI) Length of professional experience (in years) Working hours per week Average length of a treatment session (in min.) Type of professional training Undergraduate (reference) Graduate Work setting Hospital Not hospital (reference) Treating clients with musculoskeletal conditionsa Treating clients with neurological disordersa Treating clients with mental disordersa Treating clients with cardiovascular disordersa Treating pediatric clientsa Treating geriatric clientsa Treating wellness clientsa Treating clients with developmental disordersa Treating clients with learning disordersa Knowledge on SDM No knowledge (reference) Some knowledge Attitude towards SDM Passive (reference) Collaborative Nagelkerkes R2 Hosmer-Lemeshow test p 2.688 (0.714 10.118) 3.747 (0.692 20.288) 19.412 (2.467 152.719) 0.144 0.125 0.005 1.194 (0.554 2.572) 0.651 0.608 (0.328 1.127) 0.114 0.774 (0.291 2.059) 1.687 (0.620 4.589) 0.788 (0.409 1.521) 1.802 (0.747 4.348) 0.417 (0.164 1.057) 0.164 (0.057 0.469) 0.802 (0.340 1.893) 0.464 (0.185 1.163) 3.873 (1.401 10.711) 0.608 0.305 0.478 0.190 0.065 0.001 0.614 0.101 0.009 0.395 (0.196 0.795) 0.009 0.000** 0.997 0.427 p = 0.328 Note. Outcome variable: Use of SDM (0 = passive approach; 1 = collaborative approach); Bold typeface indicates significant results on a level of p < 0.05; OR = Odds ratio; CI = Confidence Interval. a Dichotomous variables with yes/no, no is the reference group. ** OR was infinitesimal and the variable was not significant. 35 Table 5 Barriers to the implementation of SDM in occupational therapy. Types of influence Mean (SD) Lack of time hinders or hindered me to actively involve clients in decision making. 3.69 (1.24) The instructions given by the physician (prescription) limit or limited my scope of action and hindered me to actively involve clients in decision making. 2.86 (1.30) Frequent therapeutic transition hinders or hindered me to actively involve clients in decision making. 3.21 (1.12) Usually there is or was just one intervention option available and therefore there was no choice to actively involve clients in decision making. 2.96 (1.19) Clients do or did not want to participate in decision making. 3.25 (1.19) Clients have or had misconceptions about the disease or the intervention and therefore active involvement in decision making was difficult. 3.64 (1.18) I lack or lacked knowledge on how to actively involve clients in decision making. 2.37 (1.05) It makes or made no sense to actively involve clients in decision making. 1.89 (1.04) Note. Relevance of perceived barriers rated on a Likert scale (1 = completely disagree to 6 = completely agree); SD = Standard deviation. 36 Figure 1 Attitudes towards SDM approaches and self-reported use of a decision making approach Note. Passive use of SDM refers to therapists who make all decisions. Collaborative use of SDM refers to therapists who work together with clients when making decisions. Passive attitudes towards SDM refers to therapists who think that they should be the only one making decisions. Collaborative attitudes towards SDM refers to therapists who think that clients should be included in the decision making process. 37 Appendix A Dear Occupational Therapist, Students mentored by Penelope Moyers EdD, OT, FAOTA at The University of Indianapolis School of Occupational Therapy are currently conducting a project in occupational therapy about shared decision making. We would prefer occupational therapists who are currently working with clients or who have worked with clients in the past to complete this survey. The purpose of this online survey is to learn about the ways in which occupational therapists use shared decision making in clinical practice with their clients. We would like to find out how much you know about the concept, the attitudes you have towards shared decision making and if and how you already use shared decision making in providing routine occupational therapy services. Therefore, we need your support and participation. You have never heard about the concept? No problem, prior knowledge is not necessary. You will be introduced to the concept of shared decision making during the survey. We will ask you to complete an online survey that will take approximately 15 to 20 minutes to answer the questions. All participants who have provided an email address and who complete the entire survey within a designated two-week time span at the beginning of data collection will be entered into a drawing to win one of 10 coffee gift cards worth $10 each. Surveys will be available September 15th, and will remain open until October 31, 2020. Reminders to complete the survey will be sent on October 1, 2020 and again two weeks before the deadline. While there are not immediate benefits to you, the information does enhance the professions knowledge base on shared decision making. We will provide you with information about the study results if you indicate that you would like to receive aggregate data that has been deidentified. We ensure your anonymity; however, we will ask for your email address in the demographics section in order to ensure that there are no duplicate surveys in case you are a member of multiple occupational therapy associations. We will be destroying these email addresses once the survey data collection is complete and will be replacing the information with a participant identifier number that is not linked to your email address. We anticipate that your participation in this survey presents no greater risk than everyday use of the Internet. Please note that email communication is neither private nor secure. Though we are taking precautions to protect your privacy, you should be aware that information sent through email could be read by a third party. De-identified and aggregate data from this study may be shared with the research community at large to advance science and health. Only one member of our research team will have access to your email address. That team member will remove email addresses before the surveys are shared with other members of our research team. That single research team member assigns a code to 38 your survey so that once the study is completed and after we have sent aggregated results to those participants who requested the information, all email addresses will be destroyed. Despite these measures, there is a slight change of a data breach. Participation in this survey is voluntary. There are no disadvantages if you do not want to participate in the survey. The only disadvantage in completing the survey is that you may engage in reflection to decide how your practice should better incorporate the concepts of shared decision making. Completing all survey questions is best for thorough data analysis, so be careful to not accidentally skip any questions which could make you uncomfortable. Portions of incomplete surveys may be analyzed so the participant may decide to purposefully skip questions for any reason. People can choose not to participate in the survey. If you decide to participate, please read all questions and response options carefully and choose the answer that suits best. Please note that there are no right or wrong answers. The main researcher conducting this study is Penelope Moyers EdD, OT, FAOTA; with additional investigators include Abby Gettinger, Anna Slusser, Hailey Beneker, Jordan Bentley, Rachel Jones, and Tristan Grubbs at the University of Indianapolis. If you have questions now or later, you may contact Penelope Moyers at moyers@uindy.edu. If you have any questions or concerns regarding your rights as a participant in this study, you may contact the Institutional Review Board (IRB) for Human Participants at 607-255-5138 or access their website at http://www.irb.cornell.edu. You may also report your concerns or complaints anonymously through Ethicspoint online at www.hotline.cornell.edu or by calling toll free at 1-866-293-3077. Ethicspoint is an independent organization that serves as a liaison between the University and the person bringing the complaint so that anonymity can be ensured. Thank you very much for your participation in our project. Informed Consent Before answering the survey we need your informed consent to participate in our study. I confirm that I have read all information about the study and about data security and confidentiality. I agree to participate in this survey. Yes No I do confirm that I am an occupational therapist that is currently seeing clients or worked with clients in the past. Yes No 39 1. How much do you know about the concept of shared decision making? I dont know anything about the concept. 1 2 3 4 5 (Filter: If question 1 = 0 then skip question 2) I have comprehensive knowledge on the concept. 6 7 8 9 10 2. Where have you learned about shared decision making? (Multiple responses allowed) During a training session or a meeting. During the studies. I read about it. Colleagues have told me about it. Others ________________ 40 Definition shared decisionWhat is shared decision making? making 3. In your opinion, who should make the treatment decision? Please choose the answer, which is most applicable to you. I should make or should have made the intervention decision on my own. I should make or should have made the intervention decision on my own after considering the clients opinion. I should make or should have made the intervention decision together with my client. The client should make or should have made the intervention decision after seriously considering my opinion. The client should make or should have made the intervention decision on her/his own. 41 4. Please consider how useful you believe the concept of shared decision making to be for the intervention planning in occupational therapy. Consider different client groups separately from other groups. Link: Definition of shared decision making The concept of shared decision making is or was useful for the intervention planning of completely strongly somewhat somewhat strongly completely disagree disagree disagree agree agree agree clients with musculoskeletal conditions. clients with neurological disorders. clients with cardiovascular diseases. clients with mental disorders. clients who need wellness and health promotion. other. (Please specify) _________________ __ other. (Please specify) _________________ __ clients with developmental disorders. clients with learning disorders other. (Please specify) _________________ __ 42 5. Who usually makes or made the intervention decision in clinical practice? Please consider a typical situation in clinical practice when answering the question. I make or made the treatment decision on my own. I make or made the treatment decision on my own after considering the clients opinion. I make or made the treatment decision together with my client. The client makes or made the treatment decision after seriously considering my opinion. The client makes or made the treatment decision on her/his own. 43 6. Please consider if you use or have used the concept of shared decision making in routine intervention. Consider different client groups separately from each other. Link: Definition of shared decision making I use or used the concept of shared decision making for the intervention planning of completel strongly somewha somewha strongly completely I do not y disagree disagree t disagree t agree agree agree treat this client group clients with musculoskeleta l conditions. clients with neurological disorders. clients with cardiovascular diseases. clients with mental disorders. clients who need wellness and health promotion. clients with developmental disorders clients with learning disorders other. (Please specify) ____________ ___ other. (Please specify) ____________ ___ 44 other. (Please specify) ____________ ___ 7. Please think of the last client session in which an intervention decision has been made. Which health complaint/problem/illness was the client session about? ________________________________________________ What intervention decision was made? (e.g., therapeutic techniques or measures)? ________________________________________________ Nine statements related to the decision making in the above mentioned client sessions are listed below. For each statement, please indicate how much you agree or disagree. completely strongly somewhat disagree disagree disagree I made clear to my client that a decision needs to be made. I wanted to know exactly from my client how he/she wants to be involved in making the decision. I told my client that there are different options for providing intervention for his/her medical condition. I precisely explained the advantages and disadvantages of the intervention options to my client. I helped my client understand all the information. I asked my client which intervention option they prefered.. My client and I thoroughly weighed the somewhat agree strongly agree completely agree 45 different intervention options. My client and I selected an intervention option together. My client and I reached an agreement on how to proceed. 8. Barriers to the implementation of shared decision making The following issues could hinder you from involving your client actively in the decision making process. For each statement, please indicate how much you agree or disagree. Link: Definition of shared decision making completely strongly disagree disagree Lack of time hinders or hindered me to actively involve clients in decision making. The instructions given by the physician (prescription) limit or limited my scope of action and hindered me to actively involve clients in decision making. Frequent therapeutic transition hinders or hindered me to actively involve clients in decision making. Usually there is or was just one intervention option available and therefore there was no choice to actively involve clients in decision making. Clients do or did not want to participate in decision making. Clients have or had misconceptions about the disease or the intervention and somewha t disagree somewha t agree strongly agree completely agree 46 therefore active involvement in decision making was difficult. I lack or lacked knowledge on how to actively involve clients in decision making. It makes or made no sense to actively involve clients in decision making. Other barrier. (Please specify) ________________ Other barrier. (Please specify) ________________ Other barrier. (Please specify) ________________ We would be pleased, if you could provide us with some information about yourself and your everyday work. 9. How old are you? (in years) ______ 10. What is your gender? ___________ 11. What is your current email address? __________________________________ 12. Would like to receive a copy of the aggregated results? Yes No 13. Please describe your professional degrees obtained. (Multiple responses allowed) Bachelor entry-level degree Masters entry-level degree Masters post-professional degree Clinical doctorate entry-level degree Clinical doctorate post-professional degree PhD or EdD 47 Other ________________(write in) 14. In which state did you practice or are practicing? _______________ 15. Do you currently see clients or have you seen clients in the past? Yes No 16. How long have you or did you work as an occupational therapist? ________ (in years) 17. On average, how many hours per week do you or did you work as an occupational therapist? ________ (in hours) 18. On average, how long is or was one or your intervention sessions? _________ (in minutes, e.g. 20 or 20-30) 19. Which client groups do you treat or did you treat in everyday work? (Multiple responses allowed) Clients with musculoskeletal conditions Clients with neurological disorders Clients with mental disorders Clients with cardiovascular disorders Pediatric clients Geriatric clients Wellness clients Clients with developmental disorders Clients with learning disorders Others _______________ 20. In which work settings do you currently work or did you work? (Multiple responses allowed) 48 Private practice Outpatient clinic Home health Hospital Rehabilitation center School Long-term care/ Skilled nursing facility Others _____________ 21. Is there anything else you would like to tell us? Here you have space to add comments, wishes, suggestions and criticism. Dear occupational therapist, Thank you very much for taking the time to complete this survey. We appreciate your contribution in facilitating the understanding of shared decision making in occupational therapy. If you have any questions considering the project do not hesitate to contact Penelope Moyers (moyers@uindy.edu). 49 Appendix B Table B.1 Attitudes and use of SDM in different patient groups. Attitudes towards SDM* Self-Reported use of SDM** Clients with musculoskeletal conditions Mean (SD) 4.93 (.947) Mean (SD) 4.85 (.980) 413 Clients with neurological disorders 4.67 (.957) 4.65 (.960) 426 Clients with cardiovascular disorders 4.95 (.901) 4.71 (1.026) 356 Clients with mental disorders 4.55 (.997) 4.37 (1.005) 365 Clients who need wellness and health promotion 5.13 (.943) 4.92 (.936) 369 Clients with developmental disorders 4.46 (.937) 4.36 (.986) 374 Clients with learning disorders 4.56 (.936) 4.40 (1.030) 362 Patient Groups N Note. Attitudes towards and use of SDM measured on a Likert scale (1 = completely disagree to 6 = completely agree); *sample size for attitudes towards SDM: N = 462; **sample size for self-reported use of SDM varied as participants could report to not treat this group of patients; N = number of subjects; SD = standard deviation. 50 Table B.2 Mean scores of the SDM-Q-Doc items. Items 1. I made clear to my client that a decision needs to be made. 2. I wanted to know exactly from my client how he/she wants to be involved in making the decision. 3. I told my client that there are different options for treating his/her medical condition. 4. I precisely explained the advantages and disadvantages of the treatment options to my client. 5. I helped my client to understand all the information. Mean (SD) 4.52 (1.049) 4.47 (.987) 4.59 (1.041) 4.42 (1.130) 4.83 (.852) 6. I asked my client which intervention option he/she prefers. 4.68 (1.061) 7. My client and I thoroughly weighed the different intervention options. 4.16 (1.173) 8. My client and I selected an intervention option together. 4.47 (1.019) 9. My client and I reached an agreement on how to proceed. 4.72 (.953) TOTAL score 40.86 (9.265) TOTAL score, standardized (0-100) 70.67 (15.83) Note. Answers of each item based on a Likert scale (0 = completely disagree to 5 = completely agree). High total score indicates implementation of SDM to a high degree. SD = standard deviation. Signature: Email: decleenek@uindy.edu  ...

... Developing Social and Life Skills of College Students with Autism Spectrum Disorder Ariel Galliher, OTS 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: Jennifer Fogo, PhD, OTR Running head: DEVELOPING SOCIAL AND LIFE SKILLS A Doctoral Capstone Experience Project Entitled Developing Social and Life Skills of College Students with Autism Spectrum Disorder 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 Ariel Galliher, OTS Approved by: Faculty Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date 2 DEVELOPING SOCIAL AND LIFE SKILLS Developing Social and Life Skills of College Students with Autism Spectrum Disorder Galliher, Ariel University of Indianapolis 3 DEVELOPING SOCIAL AND LIFE SKILLS Developing Social and Life Skills of College Students with Autism Spectrum Disorder Abstract College students with Autism Spectrum Disorder (ASD) experience unique challenges and difficulties within the academic and social realms they interact in. Fifteen college students with ASD enrolled in the BUILD program at the University of Indianapolis participated in programming for 13 weeks. Baseline data from the Autism Social Skills Profile-2 and survey results gathered from students were the foundation for the program and curriculum design to ensure relevance to students. Following 13 weeks of a multi-setting intervention program, students more consistently demonstrated the use of appropriate social skills in a variety of settings. Students also self-reported improved confidence with their ability to utilize social and life skills in real world scenarios. With their improved confidence and clear ability to engage more appropriately with others, students are more capable of succeeding in academic, social, independent living, and work-related settings. 4 DEVELOPING SOCIAL AND LIFE SKILLS 5 Developing Social and Life Skills of College Students with Autism Spectrum Disorder Currently, the Centers for Disease Control and Prevention (CDC) (2020) reports that about 1 in 54 children have an Autism Spectrum Disorder (ASD) diagnosis. Among the most common symptoms experienced by children diagnosed with ASD are deficits in social interaction skills and executive functioning skills (CDC, 2019). These symptoms are present across the lifespan and can impact daily life. In young adulthood, they can have profound impacts on academic performance, independent living, and employment (Newman, et al., 2011; Van Hees, et al., 2015; White, et al., 2016). Universities across the nation struggle to develop and provide services for students with ASD that fully support students educational and social needs (Van Hees, et al., 2015). The University of Indianapolis (UIndy) offers a special disability services program with provisions above and beyond those normally provided to college students with disabilities. At UIndy this is called the BUILD (Baccalaureate for University of Indianapolis Learning Disabled) program and is where I developed and implemented the following program. Staff in BUILD offer special disability services and provide support for academic and social success at the college level. The services offered by BUILD staff include social skills training and individualized intervention opportunities to improve students daily lives and educational outcomes. Before I implemented the program, students with ASD enrolled in BUILD identified their areas of difficulty related to social and life skills. Additionally, BUILD staff and parents identified the perceived needs and struggles of this student population. Students, staff, and parents indicated that participants would benefit from training to help students initiate social interaction, understand the give and take of conversations and why it matters, communicate concerns to professors and university staff, and feel confident in their abilities to seek out and DEVELOPING SOCIAL AND LIFE SKILLS 6 obtain employment. Staff and parents also expressed that students needed assistance with how to open a bank account to get a paycheck directly deposited, address and mail an envelope for paying bills and returning mailed forms, find job postings, complete job applications, budget money, and cook meals. I developed programming relevant to the social and life skills needed for independent living, meaningful employment, education, and engagement with others. Review of Literature In a review of relevant literature, I found that the difficulties associated with an ASD diagnosis can impact college students with ASD both inside and outside the classroom environment. I used the person-environment-occupation (PEO) model to examine the relationship between the personal characteristics of an individual with ASD, the environmental barriers presented in various everyday scenarios, and the occupational engagements of college students with ASD. Additionally, I used Levinsons theory to guide the process of creating programming relevant to college students with ASD. I used this theory to create programming directly relevant to the young adult transition described by Levinson in this theory. According to Levinson, college students are in the early adulthood transition (Levinson, 1986). This transition consists of a movement to forming and pursuing youthful aspirations, establishing a niche in society (Levinson, 1986, p. 5). I used Levinsons theory as the basis for understanding college students transitional experiences and developing programming specific to their stage of life. In combination with he following review of literature and needs assessment data, the PEO model and Levinsons provided the framework for programming to target social and life skills for college students with ASD at UIndy. The following review of the literature shows the current findings regarding challenges faced by young adults with ASD. Also included is a review DEVELOPING SOCIAL AND LIFE SKILLS 7 of evidence-based interventions used to improve the social and life skills of individuals with ASD. Trends indicate that more young adults with ASD are going to college. However, the graduation rate for these students is 40% compared to 60% for their neurotypical peers (Newman, et al., 2011). Research shows that college students with ASD have difficulties functioning socially in a classroom environment, engaging in group projects and discussions, developing student-faculty relationships, obtaining internships, and forming relationships to feel like they belong with other students (Cai, & Richdale, 2016; McLeod, et al., 2019). Students encounter a variety of specific social situations at the college level, including dorm or student events, clubs, sporting events, and dining (Ashbaugh, et al., 2017). Additionally, researchers indicate that college students with ASD often have difficulty working independently, interviewing for a job, responding to feedback, being aware of their own or others emotions, living independently, managing time, scheduling time to eat and sleep, and navigating transportation (Cullen, 2015; Gal, et al., 2015; Gilson, & Carter, 2016; Grob, et al., 2019; McKnight-Lizotte, 2018; White, et al., 2016). Researchers indicate that intervening to provide practice and information on the skills required for navigating these situations can improve student satisfaction and participation in these activities (Ashbaugh, et al., 2017). Researchers have found that college students regularly engage in three main categories of occupation: education, student life and daily (independent) living (Van Hees, et al., 2015, p. 1677). Research also shows that college students with ASD experience a consistent set of challenges across all three categories (Van Hees, et al., 2015). Specifically students with ASD have difficulty in novel situations or with change. They experience exhaustion from expected social contact, have trouble with time management and information processing, have difficulty DEVELOPING SOCIAL AND LIFE SKILLS 8 disclosing their ASD, and struggle with poor mental health (Van Hees, et al., 2015). Additional difficulties include poor emotional regulation, living independently, social engagement, and preparing for careers (White, et al., 2016). Researchers found that most college students with ASD felt like the programming and assistance provided at the college level met their educational needs (Cai, & Richdale, 2016). However, very few students felt that programming or assistance met their social needs related to student life and independent living (Anderson, & Butt, 2017; Cai, & Richdale, 2016; Cullen, 2015). As a result, research shows that students with ASD have lower GPAs and class pass rates, decreased engagement in field experiences and internships, no sense of belonging, fewer close or romantic relationships, and more mental health issues than their neurotypical peers (McLeod, et al., 2019). The academic, social, and health-related outcomes of students with ASD are, on average, poorer than the outcomes of their neurotypical peers. However, research indicates that peer mentorship, with a neurotypical peer, can improve these outcomes (Ashbaugh, et al., 2017; Cullen, 2015). Additionally, empowering students to choose activities improved their motivation to engage (Ashbaugh, et al., 2017). Peer modeling, video modeling, and discussion-practicefeedback models can be beneficial strategies for helping college students with ASD develop appropriate social skills (Ashbaugh, et al., 2017; Cullen, 2015; Mason, et al., 2012; Kuder, & Accardo, 2018; Wenzel, & Rowley, 2010). When students with ASD practice skills repeatedly in a variety of situations (i.e. a controlled environment and then a natural environment), they are better able to generalize new skills (Mann, & Karsten, 2020). Researchers frequently state that individual, targeted intervention is beneficial. However, in a review of relevant literature, authors rarely mentioned the benefits of group interventions for DEVELOPING SOCIAL AND LIFE SKILLS 9 this population. Therefore, I developed programming for students with ASD that targeted skills at individual and group levels. Using this combination, I provided in-depth feedback and conversation about skills at a personal level and a safe space to practice skills and engage with peers as a group. I employed a variety of intervention methods including a discussion-practicefeedback model, video modeling, and peer modeling to improve the generalization of skills across a variety of settings and scenarios. I developed a program curriculum to target skills related to population-specific needs and those described in the literature. Methods Participants Participants included in the programing a) were enrolled in the BUILD program at UIndy b) had a diagnosis of ASD and c) self-indicated a lack of skills related to employment, independent living, or social engagement. Participants were between the ages of 18 and 24. Sixteen college students students took part in this program. Many students had other diagnoses in addition to ASD. One student had a secondary diagnosis of cerebral palsy and another had a secondary diagnosis of anxiety, obsessive-compulsive disorder, and attention deficit hyperactivity disorder. Three participants identified as female and the remaining 13 identified as male. Intervention Participants took part in group and individual skills training sessions over 13 weeks. Participants attended one, hour-long skills training group per week for 12 weeks, one 30-to-45minute one-on-one individualized session with an occupational therapy student per week for 13 weeks, and one 30-to-60-minute session with a volunteer in a natural setting per week for six to eight weeks. I hosted group sessions using a discussion-practice-feedback model and covered the DEVELOPING SOCIAL AND LIFE SKILLS 10 topics of social initiation, perspective-taking, social reciprocity, social problem solving, cooking, and financial management. I discussed the importance of nonverbal communication consistently across multiple group sessions with participants. During the one-on-one sessions, I addressed social and life skill deficits related to each participant as identified by baseline and benchmark data collection. I hosted one-on-one sessions at the University of Indianapolis in a quiet location with few distractions. I suggested that each participant complete specific activities between sessions to practice applying the concepts discussed during one-on-one sessions. My intention by offering activities for practice was to help participants better generalize new skills to various settings. In addition to the one-on-one sessions, participants also engaged with a volunteer in a more natural environment (i.e. coffee shop, cafeteria, common spaces on campus, campus walking trails). Through a more natural interaction, participants had an opportunity to practice their skills in real-world scenarios. I coordinated these sessions to further aid participants in generalizing newly learned skills to realworld settings. According to Bellini (2016), the most effective way to develop programming for students with ASD is to allow assessment and data to guide decisions made about curriculum and activities. Therefore, I utilized baseline data results to design programming for students. This ensured that topics covered were both relevant and engaging for students to help increase positive outcome progress. Outcome Measures I used multiple outcome measures to track student progress during this program. Due to the complex nature of social skills and the variety of environments college students encounter, I used several outcome measures. By having objective and subjective outcome measures, I could DEVELOPING SOCIAL AND LIFE SKILLS 11 gather data from participants and staff and from myself to create a holistic picture of participant progress over time. I utilized two quantitative measures: a standardized assessment tool and a self-reported measure completed by participants. I used the Autism Social Skills Profile-2 (ASSP-2), developed by Scott Bellini (2016), to collect baseline, midpoint, and outcome data for participants. The ASSP-2 is a tool for evaluating the social skills of students with ASD. Though the tool is only validated for students up to 17 years old, the items are relevant to the early adulthood transition of college students in the current program. The subsections of this assessment tool are social emotional reciprocity, structured play activity, and detrimental social behaviors. Typical scoring of this assessment includes a raw score and a percentile score. I used the raw scores for data analysis because the percentiles were validated for students younger than the participants. The site mentor and I cooperatively completed the ASSP-2 for baseline, midpoint, and outcome measurements. The site mentor and I discussed additional skills to expand on the results of the ASSP-2 including social and life skills related to independent living, employment, and education-specific aspects of college life via unstructured interview. Following this interview, students and I developed individualized goals related to social skills that impact their academic success and independence. Utilizing these goals, I created a social skills demonstration tracking sheet for each student. BUILD staff members completed these tracking sheets following each meeting with a student. Staff members wrote qualitative summaries of each students use of skills related to their goals. To measure self-perceived progress with social and life skill abilities, the participants completed two self-reported confidence surveys. Participants completed surveys one time before and after intervention implementation. I created a 15-scenario survey to measure confidence with DEVELOPING SOCIAL AND LIFE SKILLS 12 life skill scenarios. I also developed a 16-scenario survey to measure confidence with social skill scenarios. Participants ranked their confidence for each scenario on a 100-point Likert scale. Data Analysis I analyzed data from the ASSP-2 three times: before, during, and after the intervention. I initiated data analysis by averaging raw scores for each subsection and the total raw score at baseline. I then compared the averages to the midpoint and final average raw scores. This analysis indicated average progress made by participants overall. I also utilized raw scores to track students progress in groups by grade levels and by gender. As a result of the analysis, I developed recommendations for future programming at BUILD that would be students gender and grade levels. I completed data analysis of self-reported confidence surveys before and after the intervention. I analyzed this data by calculating an average confidence rating for participants for each social skill and life skill scenario. I then compared the average at baseline to the average at the end of programming by question. These comparisons indicated average progress with confidence levels in specific social and life skill scenarios based on participant self-report. I analyzed data from the social skill demonstration tracking sheets by reviewing staff notes and comments weekly to track patterns over time. I made a visual comparison of staff notes throughout the semester to determine participant progress on goals. I analyzed subjective descriptions of skill demonstration to determine whether students met their goals after implementing the program. I also identified specific patterns or circumstances that caused changes in participants progress toward goals. DEVELOPING SOCIAL AND LIFE SKILLS 13 Results Autism Social Skills Profile-2 (ASSP-2) The average scores on the ASSP-2 at baseline indicated that students scored 115/196 for overall social functioning. The average increased to 128/196 at midpoint and 144/196 after implementation of all programming. I have outlined the results of the ASSP-2 in Tables 1.1 (baseline), 1.2 (midpoint), and 1.3 (final) below. Student Characteristics N Male Female Freshman Sophomore Junior Senior All 13 3 5 4 5 2 16 Student Characteristics N Male Female Freshman Sophomore Junior Senior All 13 3 5 4 5 2 16 Average Social Emotional Reciprocity 36/80 51/80 37/80 53/80 43/80 46/80 41/80 Average Structured Play Activity 21/44 31/44 24/44 31/44 23/44 27/44 26/44 Average Detrimental Social Behaviors 27/44 35/44 28/44 29/44 30/44 35/44 30/44 Average Social Emotional Reciprocity (change from baseline) 47/80 (+11) 58/80 (+7) 39/80 (-2) 55/80 (+2) 52/80 (+9) 53/80 (+7) 49/80 (+8) Average Structured Play Activity (change from baseline) 30/44 (+9) 34/44 (+3) 25/44 (+1) 32/44 (+1) 28/44 (+5) 31/44 (+4) 29/44 (+3) Average Detrimental Social Behaviors (change from baseline) 31/44 (+4) 36/44 (+1) 29/44 (-1) 32/44 (+3) 33/44 (-3) 35/44 (0) 32/44 (+2) Table 1.1 Baseline ASSP-2 Data Summary Table 1.2 Midpoint ASSP-2 Data Summary Average Overall Social Functioning 110/196 136/196 104/196 132/196 113/196 125/196 115/196 Average Overall Social Functioning (change from baseline) 123/196 (+13) 149/196 (+13) 111/196 (+7) 137/196 (+5) 134/196 (+21) 140/196 (+15) 128/196 (+13) DEVELOPING SOCIAL AND LIFE SKILLS Student Characteristics N Male Female Freshman Sophomore Junior Senior All 13 3 5 4 5 2 16 Average Social Emotional Reciprocity (change from baseline) 55/80 (+19) 63/80 (+12) 50/80 (+13) 61/80 (+8) 58/80 (+15) 57/80 (+11) 56/80 (+15) Average Structured Play Activity (change from baseline) 28/44 (+7) 38/44 (+7) 26/44 (+2) 30/44 (-1) 30/44 (+7) 36/44 (+9) 30/44 (+4) 14 Average Detrimental Social Behaviors (change from baseline) 34/44 (+7) 38/44 (+3) 33/44 (+5) 33/44 (+4) 37/44 (+7) 38/44 (+3) 35/44 (+5) Table 1.3 Final ASSP-2 Data Summary Average Overall Social Functioning (change from baseline) 140/196 (+30) 168/196 (+32) 130/196 (+26) 149/196 (+17) 149/196 (+36) 156/196 (+31) 144/196 (+29) Social Skill Demonstration Tracking Common goals for multiple students were related to volume, greetings, starting a conversation, and maintaining a conversation. Initially, staff members commonly reported that students required numerous verbal cues to demonstrate skills. However, at the end of the semester, staff members noted that students required fewer verbal cues to initiate conversation and sometimes they demonstrated skills indepdendently After programming, some students still required occasional verbal or visual cues as reminders to start an appropriate conversation, reciprocate questions, or maintain a conversation. Multiple students who had goals for voice volume continue to require multiple verbal cues to change their voice volume as indicated by staff notes. Qualitatively, the staff reported observed progress with several students. For example, one staff member noted that a student responded at the end of a session with a comment to Have a nice day!. This was a considerable improvement in reciprocating conversation with staff as previous reports of this students social interactions included walking away without saying anything. Other staff members reported that students who used to need prompting for initiating a greeting now spontaneously greet them even outside of scheduled sessions with comments like DEVELOPING SOCIAL AND LIFE SKILLS 15 Hi, how are you?. Multiple staff members also noted that students began to greet them by name at the start of a session and that some even started to end the session with an appropriate farewell. However, there were some staff reports that some students continue to have difficulty initiating conversation, adjusting voice volume, and coping with anxiety and stress. For example, three students still require consistent verbal prompts to initiate communication with staff and to speak more quietly when others are nearby working. Additionally, staff reports indicated that students social skill abilities commonly regressed when students were experiencing times of high stress (like midterm and finals weeks). Since multiple students also had goals related to utilizing coping skills, staff members were able to follow guidelines to help students initiate appropriate coping strategies. Staff often noted that they would require students to participate in coping skills for stress and anxiety, like deep breathing or a short walk outside during sessions. Most of the time, after participating in a coping skill, staff reported that participants were better able to demonstrate appropriate social skills. Self-Reported Confidence Surveys Overall, self-perceived confidence increased after the implementation of programming in all areas of social and life skills assessed with these surveys. Participants overall average confidence level regarding life skills increased from 74/100 at baseline to 84/100 after programming. The overall average confidence for social skills increased from 69/100 at baseline to 81/100 after programming. Tables 1.4 and 1.5 (below) show the comparison of the pre and post confidence surveys. DEVELOPING SOCIAL AND LIFE SKILLS Question 16 N *Average Life Skill Confidence Before Mail an envelope 16 85 Vote in an election 15 68 Open a bank account 16 66 Withdraw money from bank 16 79 Know what to do in car accident 16 56 Write a check 16 68 Deposit a check 16 79 Sort, wash, dry, and fold laundry 16 91 Grocery shop for specific items 16 91 Cook a meal from a recipe 16 82 Develop and stick to a budget 16 69 Take medication every day 16 85 Clean dorm/house 16 76 Pay my bills 16 53 Leave an appropriate tip 16 67 Table 1.4 Life Skill Confidence Survey Summary *Average Life Skill Confidence After (change from baseline) 90 (+5) 87 (+19) 76 (+10) 84 (+5) 70 (+14) 81 (+13) 94 (+15) 92 (+1) 93 (+2) 88 (+6) 75 (+6) 83 (-2) 83 (+7) 73 (+20) 85 (+18) *All items ranked on 0-100 point Likert scale Question N *Average Social Skill Confidence Before Initiate communication with professors about academics Ask a question about an assignment until Ive received a satisfactory response Discuss conflict with a friend Discuss conflict with a roommate Invite others to do something with me Participate in a group project for a class Understand what I can and cannot do when living with a roommate Start a conversation with a peer End a conversation with a peer Find events happening on/around campus Participate in a job interview Develop a resume for a job Express my needs and concerns to program staff Start a conversation with someone I do not know well 16 81 *Average Social Skill Confidence After (change from baseline) 89 (+8) 16 77 89 (+12) 16 16 16 16 16 69 64 66 60 81 78 (+9) 70 (+6) 78 (+12) 83 (+23) 83 (+2) 15 16 16 16 16 16 76 74 61 71 64 82 90 (+14) 84 (+10) 79 (+18) 83 (+12) 81 (+17) 87 (+5) 16 52 74 (+22) DEVELOPING SOCIAL AND LIFE SKILLS Question 17 N *Average Social Skill Confidence Before Verbalize my emotions appropriately 16 64 Complete an application for a job 16 67 Table 1.5 Social Skill Confidence Survey Summary *Average Social Skill Confidence After (change from baseline) 72 (+8) 76 (+11) *All items ranked on 0-100 point Likert scale Discussion The purpose of this project was to create a curriculum and provide intervention to students with ASD to improve students abilities to navigate and succeed inside and outside of the classroom. I developed curriculum and interventions based on the needs of 16 students with ASD as reported in interviews with staff and parents, on self-reported surveys from participants, interest surveys, objective assessments, and my review of the literature. Overall, participants demonstrated positive social interaction skills more regularly following the intervention according to the ASSP-2 and skill demonstration tracking sheets. Additionally, participants indicated overall that they felt more confident with participating in social and life skill scenarios. Participants were able to generalize skills to multiple settings including tutoring sessions, site staff interactions, meals, social engagement events, and gatherings with neurotypical peers on campus. The collaborative efforts of myself, site staff, and outside volunteers allowed participants to practice skills in various settings to help with the generalization of learned skills as indicated by Mann and Karsten (2020). Outside volunteers engaged in peer mentoring activities with participants like the ones discussed by Ashbaugh et al. (2017) and Cullen (2015). Through the utilization of a discussion-practice-feedback based model, video modeling, and peer modeling as discussed in previous research, participants demonstrated more consistent use of appropriate DEVELOPING SOCIAL AND LIFE SKILLS 18 social skills based on setting (Ashbaugh, et al., 2017; Cullen, 2015; Mason, et al., 2012; Kuder, & Accardo, 2018; Wenzel, & Rowley, 2010). Similar to research by Ashbaugh et al. (2017), the intervention provided to students to target work skills, academic-related social interaction skills, and peer engagement skills improved participants abilities to appropriately engage with peers and academic staff. However, following the intervention, participants were no more likely to seek out social opportunities independently and still required a lot of verbal prompting and encouragement to attend social events, which differed from the results of Ashbaugh et al. (2017). Overall, participants demonstrated appropriate social skills more frequently and consistently as reported by site staff and outside volunteers. Participants also indicated improvements in their confidence with performing social and life skill related tasks following the intervention. The combination of individual, targeted intervention and group-based intervention provided a setting and environment that fostered improved social and life skills of students with ASD. Some environmentally specific skills, like the ability to modify voice appropriately, did not improve consistently over the course of the program. Therefore, additional targeted intervention related to this skill may be beneficial for students who still have difficulty. Finally, utilization of tools like the ASSP-2 and student self-interest and self-reported confidence surveys were beneficial for developing relevant and engaging programming for the students. For the future, it may be beneficial to implement group-based interventions with smaller groups of students. Students should be placed in small groups based on skill levels according to baseline assessments. Grouping students based on skill level will allow staff to implement a more tailored curriculum to students at various levels. Additionally, staff should continue to use the ASSP-2, or another objective assessment tool, before scheduling session topics for individual DEVELOPING SOCIAL AND LIFE SKILLS 19 and group programming. Participants in this program were more engaged when lessons were relevant to their skill levels. Some students did benefit from watching students with strengths in a skill model the expected behavior. However, other students were bored and uninterested if they thought they already knew the skill being taught, even when they were asked to model the skill for the group. Therefore, it is important that the staff at BUILD continue to develop and change curriculum activities to match student needs in order to see improvements in students skills. DEVELOPING SOCIAL AND LIFE SKILLS 20 References Anderson, C., & Butt, C. (2017). Young adults on the Autism Spectrum at college: Successes and stumbling blocks. Journal of Autism and Developmental Disorders, 47, 3029-3039. doi: 10.1007/s10803-017-3218-x Ashbaugh, K., Koegel, R. L., & Koegel, L. K. (2017). Increasing social integration for college students with Autism Spectrum Disorder. Behavioral Development Bulletin, 22(1), 183196. doi: 10.1037/bdb0000057 Bellini, S. (2016). Building social relationships 2. AAPC Publishing. Cai, R. Y., & Richdale, A. L. (2016). Educational experiences and needs of higher education students with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 46, 31-41. doi:10.1007/s10803-015-2535-1 Centers for Disease Control and Prevention. (2020). Data & statistics on Autism Spectrum Disorder. Retrieved from https://www.cdc.gov/ncbddd/autism/data.html Centers for Disease Control and Prevention. (2016). Signs and symptoms of Autism Spectrum Disorders. Retrieved from https://www.cdc.gov/ncbddd/autism/signs.html Cullen, J. A. (2015). The needs of college students with Autism Spectrum Disorders and Aspergers Syndrome. Journal of Postsecondary Education and Disability, 28(1), 89-101. Gal, E., Landes, E., & Katz, N. (2015). Work performance skills in adults with and without high functioning Autism Spectrum Disorders (HFASD). Research in Autism Spectrum Disorders, 10, 71-77. doi: 10.1016/j.rasd.2014.10.011 Gilson, C. B. & Carter, E. W. (2016). Promoting social interactions and job independence for college students with Autism or Intellectual Disability: A pilot study. Journal of Autism and Developmental Disorders, 46, 3583-3596. doi: 10.1007/s10803-016-2894-2 DEVELOPING SOCIAL AND LIFE SKILLS 21 Grob, C. M., Lerman, D. C., Langlinais, C. A., & Villiante, N. K. (2019). Assessing and teaching job-related social skills to adults with Autism Spectrum Disorder. Journal of Applied Behavior Analysis, 52(1), 150-172. Kuder, S. J., Accardo, A. (2018). What works for college student with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 48, 722-731. doi: 10/1007/s10803-017-3434-4 Levinson, D. J. (1986). A conception of adult development. American Psychologist, 41(1), 3-13. Mann, C. C. & Karsten, A. M. (2020). Efficacy and social validity of procedures for improving conversational skills of college students with Autism. Journal of Applied Behavior Analysis, 53(1), 402-421. doi: 10.1002/jaba.600 Mason, R. A., Rispoli, M., Ganz, J. B., Boles, M. B., & Orr, K. (2012). Effects of video modeling on communicative social skills of college students with Asperger Syndrome. Developmental Neurorehabilitation, 15(6), 425-434. doi: 10.3109/17518423.2012.704530 McKnight-Lizotte, M. (2018). Work-related communication barriers for individuals with Autism: A pilot qualitative study. American Journal of Rehabilitation Counselling, 24(1), 12-26. doi: 10.1017/jrc.2018.4 McLeod, J. D., Meanwell, E., & Hawbaker, A. (2019). The experiences of college students on the Autism Spectrum: A comparison to their neurotypical peers. Journal of Autism and Developmental Disorders, 49, 2320-2336. doi: 10.1007/s10803-019-03910-8 Newman, L., Wagner, M., Knokey, A. M., Marder, C., Nagle, K., Shaver, D., & Wei, X. (2011). The post-high school outcomes of young adults with disabilities up to 8 years after high DEVELOPING SOCIAL AND LIFE SKILLS 22 school a report from the National Longitudinal Transition Study-2 (NLTS2). NCSER 2011-3005. Menlo Park, CA: SRI International, New York: Springer. Van Hees, V., Moyson, T., & Roeyers, H. (2015). Higher education experiences of students with Autism Spectrum Disorder: Challenges, benefits, and support needs. Journal of Autism and Developmental Disorders, 45, 1673-1688. doi: 10/1007/s10803-014-2324-2 Wenzel, C. & Rowley, L. (2010). Teaching social skills and academic strategies to college students with Aspergers Syndrome. Teaching Exceptional Children, 42(5), 44-50. White, S. W., Elias, R., Salinas, C. E., Capriola, N., Conner, C. M., Asselin, S. B., Getzel, E. E. (2016). Students with Autism Spectrum Disorder in college: Results from a preliminary mixed methods needs analysis. Research in Developmental Disabilities, 56, 29-40. doi: 10.1016/j.ridd.2016.05.010  ...

... ETHICAL PROBLEMS FIRST FIVE YEARS 1 Encounters With Ethical Problems During the First Five Years of Practice in Occupational Therapy Alyssa Earls, Michele Govern, Morgan Haney, Haylee Ottinger, Alex Retter, and Travis Rippe December 15, 2021 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, OT, FAOTA Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 2 A Research Project Entitled Encounters With Ethical Problems During the First Five Years of Practice in Occupational Therapy Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By: Alyssa Earls, Michele Govern, Morgan Haney, Haylee Ottinger, Alex Retter, and Travis Rippe Doctor of Occupational Therapy Students Approved by: 12 / 15 / 2021 Research Advisor Date Accepted on this date by the Chair of the School of Occupational Therapy: 12 / 16 / 2021 Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 3 Encounters With Ethical Problems During the First Five Years of Practice in Occupational Therapy Alyssa Earls, Michele Govern, Morgan Haney, Haylee Ottinger, Alex Retter, and Travis Rippe Primary Investigator: Brenda S. Howard, DHSc, OTR, FAOTA The University of Indianapolis Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 4 Abstract Healthcare professionals have consistently faced ethical problems in practice, but there is little research on the types of ethical problems being faced or how prepared these professionals are to resolve those issues. This study aimed to fill the gap in the literature by exploring ethical problems encountered by occupational therapists and occupational therapy assistants within the first five years of practice. Investigators sent a survey in cooperation with NBCOT to a sample of 7,800 OTs and OTAs certified within the past five years. The inclusion criteria included OT practitioners who received their NBCOT certification within the last five years. Exclusion criteria included individuals who are not OT practitioners and individuals who have received their NBCOT certification but have not worked as an OT practitioner. The survey included questions regarding demographics of participants, types of ethical problems encountered in practice, how often ethical problems were encountered, and type of education received regarding ethics. The investigators analyzed the survey through descriptive statistics, Cronbachs Alpha, Mann-Whitney U-Test, independent samples median test, and Kruskal-Wallis. 125 OT practitioners responded to the survey. OT practitioners working in Adult and Older Adults Settings experienced more ethical problems than practitioners in pediatric settings. OTAs also experienced more ethical problems related to Compromised Care and OTs experienced more ethical problems with Therapeutic Relationships. OT practitioners who have been in practice for more than one year reported experiencing significantly more ethical problems. Implications included the need for mentoring and ethics continuing education for new practitioners. Further research in which types of ethics education best prepare practitioners to manage ethical problems is warranted. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 5 Encounters With Ethical Problems During the First Five Years of Practice in Occupational Therapy Ethical problems have confronted occupational therapy (OT) practitioners every day in practice. These ethical problems have included tensions between OT practitioners and clients, OT practitioners and practitioners in other disciplines (Kinsella et al., 2015), issues in regards to goal setting (Foye et al., 2002), limited resources in practice settings such as not enough time for intervention or communication (Foye et al., 2002), and limited resources due to third-party payers not supporting desired intervention resources (Kinsella et al., 2008). These ethically questionable situations have become more prevalent in health care practice, creating a need for professionals to be more accountable for their ethical decision making (Aveyard et al., 2005; Geddes et al., 2009; Goldie, 2000; Grady et al., 2008; Khatiban et al., 2019). Burnout has been linked to moral distress, which has been a contributing factor to developing mental health problems for healthcare workers (Smallwood et al., 2021). Reimbursement and third party payors, rather than evidence-based practice, have driven decision-making in the interprofessional team, causing ethical distress. Clinicians within the acute rehabilitation setting (physicians, nurses, physical and occupational therapists, etc.) experienced ethical problems when insurance did not provide benefits for services the client needed (Kirschner et al., 2001). OT practitioners have been required to choose interventions that were not their first choice due to economic reasons (Kassberg & Skr, 2008). Additionally, practitioners have faced ethical challenges when management prioritized financial gains more than quality care (Hazelwood et al., 2018). Finally, clinicians also experienced ethical problems when dealing with the capacity of patients decision-making in regard to informed consent and clients refusing recommendations from the healthcare team (Kirschner et al., 2001). Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 6 A variety of factors influence OT practitioners ethical decision making. Kalantari et al. (2015) found that organizational factors, clients family issues, social factors, and therapist related factors influenced OT practitioners ethical behavior. Therapist-related factors included insufficient educational training in ethics and communication skills, varying views/beliefs of family, a lack of social and financial support systems, and the therapists personal characteristics (Kalantari et al., 2015). Ethical problems in professional and therapeutic relationships have included management of disagreements between members of the interprofessional team and between practitioners and family members (Foye et al., 2002; Kassberg & Skr, 2008). Kassberg and Skr (2008) found that OT practitioners experienced ethical problems related to shared decision making, autonomy, and privacy among adults with developmental disabilities, their family members, and other healthcare professionals. Similarly, in a pediatric setting, clients parents and practitioners had differing perspectives on the childrens best interests (Delany & Galvin, 2014). OT practitioners reported conflict when a patient, family, caregiver, or other members of the healthcare team disagreed regarding recommendations of treatment and goal setting in an academic rehabilitation hospital (Foye et al., 2002). OT practitioners have also experienced breaches in professional boundaries and conflicts of interests with patients (Kassberg & Skr, 2008). To avoid experiencing uncertainty when facing ethical problems in practice, practitioners have used the American Occupational Therapy Association (AOTA) Occupational Therapy Code of Ethics, which has provided guidelines on how an OT practitioner should act in the field (AOTA, 2020). Also in the United States (US), the Accreditation Council for Occupational Therapy Education (ACOTE) has established an ACOTE standard that addresses ethics in Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 7 occupational therapy education (Accreditation Council for Occupational Therapy Education [ACOTE], 2018). Through the implementation of these standards, ACOTE has required that each OT and occupational therapy assistant (OTA) program must incorporate ethics education. However, there have not been any stipulations on how these ACOTE standards have been implemented into each program. Many countries have developed different ethical standards for their OT educational programs (Lalibert et al., 2015). Despite these educational standards, many OT practitioners felt that their educational background did not prepare them to effectively deal with ethical problems (Brockett, 1996; Kalantari et al., 2015; Kinsella et al., 2015; Lalibert et al., 2015; Penny & You, 2011; VanderKaay et al., 2019). Investigators found that a lack of knowledge from education led to feelings of stress, pressure, and uncertainty when managing ethical problems (Atwal & Caldwell, 2003). To counteract this lack of knowledge, educators in healthcare professions have emphasized ethics in the curriculum in recent years (Chin et al., 2011; Goldie, 2000; Goold & Stern, 2006; Lalibert et al., 2015). Keefer and Ashley (2001) found that those who received a professional ethics education had superior responses to ethical problems than those who relied on personal experience and common knowledge. Instructors in a variety of healthcare professional programs teach similar ethics topics, but gaps in ethics education were identified in some programs (Aveyard et al., 2005; Brockett, 1996; Burkemper et al., 2007; Goold & Stern, 2006; Hudon et al., 2014, Hudon et al., 2016). Ethics content that was taught using the traditional lecture-based format was less memorable and relatable compared to content that was taught in non-traditional ways (Khatiban et al., 2019; Limbach & Waugh, 2005). The ways found to be most useful were small-group learning (Geddes et al., 2009; Goldie et al., 2002; Tysinger & Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 8 Klonis, 1997; Venglar & Theall, 2007), role-playing, case studies (Burkemper et al., 2007; Haddad, 1988; Hudon et al., 2014; Lalibert et al., 2015; Venglar & Theall, 2007); and interprofessional ethics courses (Atwal & Caldwell, 2003; Clark et al., 2007; Fox et al., 1995; Irvine et al., 2002; Polczynski et al., 2019). Researchers found that using these methods in a specific course dedicated to ethics education alone demonstrated a better outcome of knowledge and application when compared to ethics being included in another course or taught in many courses throughout the entire curriculum (Brockett, 1996; Haddad, 1988; Hudon et al., 2014; Penny & You, 2011; VanderKaay et al., 2019). Despite these findings, the use of broad courses focused on standards of practice have been the most common strategy to teach ethics in OT programs (Hudon et al., 2014). However, it has also been suggested that the most effective way to learn ethics content has been on-site learning in clinical rotations (Burkemper et al., 2007; Dieruf, 2004; Geddes et al., 2009; Goold & Stern, 2006). The wide variety of teaching methods that have been identified suggested that there has been no best method for teaching ethics content (Dieruf, 2004; Lalibert et al., 2015). Along with proper ethics education, Hazelwood et al. (2018) and VanderKaay et al. (2019) stressed the importance of having available resources in practice to navigate ethics problems. These researchers suggested creating a mentorship program in practice so OT practitioners can seek counsel when faced with the uncertainty of an ethical problem. Although some OT practitioners have been aware of available resources or tools, they reported not utilizing them because they believed the resources available to them were not beneficial to their situation (VanderKaay et al., 2019). The uncertainty of effective teaching methods and resources that have been identified have only further validated the need for more research in these areas (Goldie et al., 2002; Hudon et al., 2016). Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 9 Of the little research completed on ethics education in OT programs in the US, most of it has been severely outdated (Brockett, 1996; Haddad, 1988). This fact is problematic because OT programs have changed dramatically since these articles have been published, most notably the switch from a bachelors degree requirement to a masters degree for occupational therapists, requiring changes to the curriculum (Edwards et al., 2012; Greenfield & Banja, 2009). Moreover, no articles explored ethics education in OTA programs. The majority of literature on ethics education in OT has focused on healthcare professions in Canada, the United Kingdom, and various other countries outside of the US (Aveyard et al., 2005; Brockett, 1996; Goldie, 2000; Hudon et al., 2014, Hudon et al., 2016; Lalibert et al., 2015). A better understanding of OT practitioners encounters with ethical problems and the educational experiences that best prepared them for managing those encounters is needed. With this knowledge, OT educators can create educational experiences for OT students and practitioners that will better prepare them for ethical practice. The purpose of this study is to examine occupational therapists and occupational therapy assistants encounters with ethical problems within their first five years of practice. Secondary purposes include exploring practitioners education in entry-level didactic education, fieldwork experiences, and post-graduate continuing education for navigating ethical problems; exploring OT practitioners understanding of and confidence with ethical problem solving; and to compare these factors with OT practitioners demographics. Ethical problems, for purposes of this study, are defined as ethical situations involving one or more issues identified as ethical principles that require deliberation and evaluation to resolve (AOTA, 2020; Doherty & Purtilo, 2016). This research addresses a gap in the occupational therapy literature by increasing knowledge Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 10 regarding ethical problems in practice. Investigators discuss how this study might inform ethics education in the entry-level occupational therapy curriculum for increased effectiveness. Method Study Approach/Design To address the purpose of this study, investigators conducted a survey in cooperation with the National Board for Certification in Occupational Therapy (NBCOT), the initial certifying body for occupational therapy in the USA. The survey data was analyzed quantitatively. See survey questions (Appendix A). Part 1 of the survey addressed demographic factors; Part 2 addressed the research purpose to explore types of ethical problems; Part 3 addressed educational preparation; Part 4 addressed understanding and confidence in ethical problem solving. Ethics This study was approved as Exempt by the University of Indianapolis Human Research Protections Program (Study #01237-UIndy). Informed consent was obtained through participants completion of the first question on the survey. Participant Characteristics Target Demographics, Inclusion/Exclusion Criteria Target demographics included being an occupational therapist or occupational therapy assistant who has been certified by NBCOT and practicing occupational therapy for five years or less. The inclusion criteria required that all eligible participants received their NBCOT certification within the last five years. The exclusion criteria included individuals who are not OT practitioners and individuals who have received their NBCOT certification but have not worked as an OT practitioner. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 11 Sample Size Needed to Adequately Power the Study G*Power 3.1.9.4 (Faul et al., 2009) was used to calculate sample size needed to achieve statistical significance. With effect size set at 0.3 and power set at 0.95, the total sample size needed to demonstrate a medium effect size was 134 participants with a two-tailed T-test. Materials and Measures Instrument In order to explore the research purpose and secondary purposes, investigators created an original survey. The survey included key topics from the literature regarding ethics experiences, education, working through ethics problems, and appropriate demographics. Investigators constructed the survey using principles from Forsyth and Kviz (2006) and from Stein et al. (2013). A social science survey expert and three ethics content experts reviewed the survey to enhance content validity and reliability. Additionally, investigators piloted the survey with six occupational therapy faculty members. Investigators asked the faculty members to review the survey for its content related to the research questions and for clarity of the survey questions using the Cognitive Validity Method (Willis, 2004). Investigators edited the survey for content and clarity following these reviews. Data Collection Investigators collected data through Qualtrics (Provo, Utah, USA, 2020) (https://www.qualtrics.com) online survey platform. With cooperation from NBCOT, investigators distributed the survey. Procedures Sampling Procedures and Recruitment Materials Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 12 Investigators provided the survey link and NBCOT distributed the link through email to a sample of 3,600 OTs and 1,200 OTAs who had been certified within the past five years on May 19, 2020 (see Appendix B, Recruitment Email). Investigators posted on social media (NBCOTs Facebook and Twitter page) on June 9, 2020 and sent a reminder email on June 12, 2020 due to low responses. Investigators added to the recruitment pool an additional 2,000 OT and 1,000 OTA via email on June 17, 2020. Investigators then extended the survey deadline from June 19, 2020 to July 3, 2020. Investigators stratified the recruitment sample by practitioner type (OT and OTA) and by region of the country to obtain a representative sample of participants. Investigators collected the data anonymously, with no email or web addresses collected. Screening Procedures Screening for inclusion criteria occurred through logic built into the survey that screened out participants who did not meet the inclusion criteria or who met the exclusion criteria. Investigators reviewed the data manually for missing variables. Participants who did not complete 80% or more of the items in any of the question groups were excluded from the dataset. Data Analysis Investigators analyzed quantitative survey data using SPSS Version 26. Investigators examined variables with descriptive statistics, counts, and percentages. After data cleaning and accounting for missing variables, investigators analyzed item groupings using Cronbachs to create scales. Due to tests of normality indicating the data were nonparametric, investigators then completed comparative analyses using Mann-Whitney U-tests and Kruskal-Wallis tests. Results Participant Demographics Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 13 There were 163 participants who completed the demographic questions. After reviewing the dataset for incomplete responses, 125 participants remained. Investigators found that 23.2% of the participants completed their initial NBCOT certification time Less Than 1 Year ago, 44% of the participants completed their initial NBCOT certification time 1-3 Years ago, and 32.8% completed their initial NBCOT certification time 3-5 Years ago . Additionally, investigators found that 83.2% of the participants were OTs and 16.8% of the participants were OTAs. The most frequent educational level was a Masters Degree representing 50.4% of the participants. The most common practice setting was Rehabilitation and Disability, in which 44% of the participants were currently practicing. In regard to geographic location, the largest group of participants (34%) are currently practicing in the South. A large majority of the participants were Female (92%), White/Caucasian (86.4%), and Not Hispanic or Latino (91.2%). See Table 1. Reliability of Scale Before calculating and analyzing scale section totals, investigators completed Cronbachs to determine scale reliability. The alpha levels for all scale sections were 0.796 or above, indicating good to high reliability of scale (Taber, 2018). See Table 2. Encounters with Ethical Problems: Productivity and Related Issues Respondents rated the top three ethical problems in this section of the survey as Productivity, Billing, and Compromised Care due to Cost Containment. Interestingly, 17.1% of participants said they experienced Productivity issues constantly in practice. Write-in items included practice owners billing for services never rendered, unreasonably high productivity standards and OT practitioners working off the clock or falsifying time on the clock or being terminated for not meeting productivity standards, unethical co-treatment billing practices, Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 14 pressure to provide services to clients who did not need them in order to make money (either initiating services or failing to terminate services), forcing participation and billing regardless of whether the client participated in the session, patient safety issues due to absence of physical assistance, HIPAA violations, documentation plagiarism (copying notes from others), and biases and hierarchies in the workplace. See Table 3. Comparisons of Productivity Ethical Problems and Demographic Groups Investigators compared Productivity and Related Issues Scale Total Mean to the demographic characteristics of Current or Most Recent OT Practice, Region for Current Practice (South, West, Northeast, Midwest, and Hawaii, Alaska, Puerto Rico, Washington DC, US territories, and Military), Years Since NBCOT Certification, and Current Primary Practice Setting. Owing to the small number of respondents in some categories, investigators combined settings into groups of Pediatric settings, Adult and Older Adult settings, and Other settings. Investigators determined that the sample size was not large enough to compare Gender and Race. Investigators selected the single items, Productivity, Billing, and Compromised Care due to Cost Containment for further analysis and comparisons to groups, due to these items having a higher frequency of occurrence (median = 3). When comparing Current or Most Recent OT Practice on the ethical problems of Productivity and Related Issues on the total scale and individual scale items, there were no significant items found except for Compromised Care due to Cost Containment. See Table 4. Comparison of Billing item between Current or Most Recent OT Practice trended toward significance with the Independent Samples Median Test (.068) but not with the Mann-Whitney U Test (.168), n=120. Comparison of Compromised Care due to Cost Containment between Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 15 Current or Most Recent OT Practice approached significance for Mann-Whitney U Test (.054) and was significantly different with the Independent Samples Median Test (.027). Mean rank indicated that OTAs experienced this ethical dilemma significantly more than OTs. See Table 4. Investigators used Kruskal-Wallis to compare Pediatric settings, Adult and Older Adult settings, and Other settings (e.g. Health and Wellness, Mental Health, Work & Industry, Emerging and Nontraditional, Academic, Administrative and Management, Other, Not Working in OT) due to the nonparametric nature of the data. Comparison of groups to the Productivity and Related Ethical Issues Total Scale Mean was significant when comparing these three groups (p=.044), suggesting these ethical problems did vary by setting. Post-hoc Bonferonni correction indicated the significant difference (p=.044) was between groups 1 (Children & Youth) and 2 (Adults and Older Adults, p=.015), with pairwise comparisons indicating that practitioners in Adult and Older Adult settings experiencing this issue significantly more than in Children and Youth settings. Comparison of ethical problems with the Productivity item by settings indicated significant differences between groups (.000, n=120). A Post-hoc Bonferroni correction indicated the difference was significant between groups 1 (Children & Youth) and 2 (Adults and Older Adults) (p=.000). Pairwise comparison indicated OT practitioners in Adult and Older Adult settings experienced ethical problems related to the Productivity item significantly more than practitioners in Children & Youth settings. See Table 5. Comparison of Region for Current Practice to items in the Productivity, Billing, and Related Issues items, the Compromised Care due to Cost Containment item indicated significance. Post-hoc Bonferroni correction indicated the significant difference existed only between Hawaii, Alaska, Puerto Rico, Washington DC, Military, Territories, and the West region Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 16 of the country, with pairwise comparison indicating the West region reporting significantly more instances of ethical problems in this area. See Table 5. Years Since NBCOT Certification compared to Productivity and Related Issues Total Scale revealed a significant difference. Post-hoc Bonferonni correction indicated the significance was between those who have been practicing Less Than 1 Year and both other groups of 1-3 Years and 3-5 years, with both of these groups perceiving that they experienced ethical problems more consistently than those who had been practicing Less than 1 Year. Years Since NBCOT Certification compared to Productivity and Related Issues indicated the Productivity item was significant. Post-hoc Bonferonni correction indicated the significance was between those who have been practicing Less Than 1 Year and those who have been practicing for 3-5 Years, with pairwise comparisons indicating that those practicing longer experienced the issue more consistently. With the single item, Billing, there was a significant difference between groups. Pairwise comparison indicated that those practicing 1-3 Years experienced the issue significantly more than those practicing Less Than 1 Year. See Table 5. Encounters with Ethical Problems: Clinical Decision-Making and Professional Reasoning Participants were asked to answer questions pertaining to what ethical problems they have encountered in practice in regard to Clinical Decision-Making. Respondents reported that ethical problems regarding the Disagreement with a Supervisor or Administrator item and the Client Noncompliance item were experienced the most consistently in this category. The ethical problems respondents reported experiencing least consistently included End of Life Care, Medical Errors, Client Substance Abuse, and Client Experiencing Abuse or Neglect. See Table 6. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 17 Write-in items include witnessing abuse of a patient and reporting it, OTs not working at the top of their licenses due to PTs taking over, moral questions, and supervision issues. Comparisons of Clinical Decision-Making and Demographic Groups Investigators compared Clinical Decision-Making Total Scale to groups of Current or Most Recent OT Practice, Current Primary Practice Setting, and Years Since NBCOT Certification. Investigators also selected single items of Disagreement with Supervisor or Administrator (Supervision) and Unwillingness or Inability of Client to Accept or Comply with Medical Recommendations or Intervention Plan (Noncompliance) for further analysis and comparisons to groups, due to these items having a higher frequency of occurrence (median = 3). Investigators completed a Mann-Whitney U-test comparing OT/OTA practitioner types and Clinical Decision-Making Total Scale Mean, as well as individual items of Supervision and Noncompliance. Results were not significant indicating that the null hypothesis should be retained. See Table 7. Clinical Decision-Making Total Scale Mean comparison to Practice Settings approached significance. Post-hoc Bonferroni correction suggested the difference was between Adults/Older Adults Settings and the Other settings grouping. See Table 8. Investigators compared the Disagreement with Supervision item and Practice Settings. Kruskal Wallace indicated no significant relationship and the null hypothesis was retained. There was no difference in settings for Disagreement with Supervisor or Administrator. However, Noncompliance and Practice Settings was significant (p= .006). Pairwise comparisons indicated that practitioners in Adult and Older Adult Settings experienced ethical problems related to Clinical Decision-Making noncompliance significantly more than practitioners in the other two Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 18 setting groupings. Comparison of Regions of Practice with Clinical Decision Making Total Scale, single item of Supervision, and single item of Noncompliance each demonstrated no significant difference between groups. See Table 8. Clinical Decision-Making Total Scale Mean vs. Years since NBCOT Certification results were significant ( .000). Post-hoc Bonferroni correction indicated the difference was between those with time of Less Than 1 Year of experience and each of the groups with more experience (1-3 Years and 3-5 Years), with both groups experiencing this issue significantly more consistently than those in practice for Less Than 1 Year. On the single item of Supervision, there was no significant difference between groups. On the single item of Noncompliance, the null hypothesis was retained, but the results were approaching significance. Encounters with Ethical Problems: Employer/Employee and Colleague Relationships The majority of respondents reported that they never experienced ethical problems related to Employer/Employee Colleague Relationships (Table 9). Practitioners that reported experiencing problems of Employer/Employee and Colleague Relationships indicated Incompetent, Unsafe or Unnecessary Practice by a Co-Worker, Supervisor, or Supervisee (4.8%) and Forms of Harassment other than Sexual in the Workplace as occuring most frequently in this category. Other ethical problems reported at a frequent level included Discrimination, Bias, Inequality, or Other Issues Related to Race, Ethnicity, Religion, Socioeconomic Status (SES) in the Workplace; Employee Practicing without Appropriate Supervision (2.4%); Unprofessional Behavior by Supervisors, Lack of Mentorship, Inadequate Staffing, Unclear Roles Between OT and OTA, Inadequate Knowledge of OT in Other Professions, and Bias Against Workers with Disabilities. See Table 9. Write-in answers include management and supervision of OTAs, bias Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 19 against workers with disabilities, disctimination based on gender, workloads of OTs while supervising OTAs, harassment from supervisor, and not being provided adequate guidance and mentorship as a new graduate. Comparisons of Employer/Employee and Colleague Relationships and Demographic Groups Table 10 shows the comparisons between Demographic data and ethical problems related to Employer/Employee and Colleague Relationships. Researchers found a significant relationship between Years in Practice and experiencing ethical problems related to Employer/Employee/Colleague Relationships (p-value= 0.011). Post-hoc Bonferroni correction indicated that those who have been in practice for more than one year experienced more ethical problems related to Employer/Employee/Colleague Relationships than those who have been practicing for Less Than 1 Year. When comparing the items of Incompetent, Unsafe, or Unnecessary Practices and Current Practice Setting, the results trended toward significance with a p-value of 0.096. When comparing ethical problems related to Incompetent, Unsafe, or Unnecessary Practice with Years Since NBCOT Certification, the results were approaching significance with a p-value of 0.057. Further analysis showed that the demographics of 1- 3 Years Since NBCOT Certification trended towards more significance than Less Than 1 Year and 3-5 Years. See Table 10 for full results. Investigators found no significant difference between OT and OTA practitioners when compared to the total mean scale of Employer/Employee/Colleague Relationships (Mann-Whitney U-test, p=.323, n=123). There were no significant differences among Regions of Current Practice (Kruskal-Wallis Test, p=.876). Therapeutic Relationships Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 20 The most consistently experienced ethical problem relating to Therapeutic Relationship included Client Experience of Discrimination due to Socioeconomic Status (SES) (6.6%), Client becoming too Attached to the Practitioner (4.8%), and Client Commiting Discrimination Based on Race, Ethnicity, or Religion (1.6%). Table 11 shows the ethical problems that participants never, rarely, or occasionally experienced. Other reported ethical problems from write-in responses included issues with language barriers, staff not treating a skilled nursing facility as the clients home, restraining clients, discrimination based on gender, socio-economic status, and weight along with other forms of discrimination and harassment committed by patients. Comparisons of Therapeutic Relationship and Demographic Groups Table 12 shows the comparisons between demographic data and ethical problems related to Therapeutic Relationships. The researchers found a significant difference between Current Primary Practice Setting and if they experience ethical problems within Therapeutic Relationships (p-value = .003). Post-hoc Bonferroni correction indicated the significant difference was between Children and Youth and Adult/Older Adult Settings, with pairwise comparisons indicating Adult/Older Adult Settings experiencing ethical problems more consistently in the area of Therapeutic Relationships. Researchers also found that practitioners who have been NBCOT certified for more than one year experienced more ethical problems in relation to Therapeutic Relationships than practitioners who have been NBCOT certified for Less Than 1 Year (p-value = .000). The researchers found a significant difference between experiencing ethical problems related to Client Boundaries and Years Since NBCOT Certification (p = .030). Post-hoc Bonferroni correction showed that the significant differences are between those who have been NBCOT certified for 3-5 Years and those who have been Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 21 NBCOT certified for Less Than 1 Year, with those who have been certified for longer than one year experiencing ethical problems more consistently in the area of Therapeutic Relationships. See Table 12. The single item, Client becomes too Attached to the Practitioner in the Therapeutic Relationships scale was selected for closer analysis due to the high rate of occurrence of this item when examining frequency data (median = 2). There was a significant difference between OT and OTA practitioners when comparing this single item in the Therapeutic Relationships scale, but no significant difference between additional groups compared (Table 12). Bioethical Issues Out of the 123 participants who responded, 102 (82.9%) said they did not confront Bioethical Issues in practice such as Euthanasia, Abortion, Genetic Engineering, or Organ Donation. Table 13 provides descriptive statistics and comments on other Bioethical Issues experienced by occupational therapy practitioners. Ethics Education Entry-level Classroom Education Formats The results from the survey showed that most participants had some form of Ethics Education, including Face-to-Face (n=107, 78.1%) and Interwoven throughout the Curriculum (n=128, 93.1%). The majority of participants (n=129, 79.1%) stated that Face-to-Face Courses helped somewhat or helped a great deal for solving ethical problems encountered in practice, and Ethics Content Interwoven throughout the Curriculum helped somewhat or helped a great deal (n=128, 91.0%). Entry-level Classroom Education Types Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 22 The review of the survey showed that most OT practitioners certified in the past 5 years received at least some form of ethics education while in their Entry-Level Classroom (Table 14). The most consistently reported forms of ethics education included Ethics Lectures; Reading Assignments about Ethics; Ethical Problem Solving Guides, Steps, or Resources; Formal Classroom Discussion with Cohort Classmates; Informal Discussion with Cohort Classmates; and Ethics Case Studies. The least commonly experienced form of ethics education were Professional Conference Sessions Related to Ethics and Participation in a Student Organization Session Related to Ethics. An Interprofessional Education Experience Inside and/or Outside the Classroom Regarding Ethics, Ethics Exams, Ethics Role Playing was experienced by some participants (Table 14). Less than half of the participants used Professional Development Discussions with a Mentor or Advisor Related to Ethics in their Entry-Level Education. The participants found the use of Ethical Problem Solving Guide, Steps, or Resource, Ethics Case Studies, Ethics Role Playing, Interprofessional Education Experience in the Classroom Regarding Ethics, and Professional Development Discussion with Mentor or Advisor Related to Ethics were the most useful use types of education to help learn how to resolve ethical problems encountered in practice. Most of the other forms of education were found to be at least somewhat helpful by new practitioners, including Ethics Lectures, Reading Assignments about Ethics, and Formal Classroom Discussion with Cohort Classmates. Level II Fieldwork and Ethics Education The results of the survey indicated that most recent OT graduates received some form of ethics education in their Clinical Practice Education/Level II Fieldwork (Table 15). The most consistently reported forms of ethics education included Informal Discussion with OT Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 23 Colleagues in Fieldwork Settings Regarding Ethics, Informal Discussion with Interprofessional Colleagues in Fieldwork Settings Regarding Ethics, and Experience with Clients in Fieldwork Settings Involving Ethical Issues or Problems. Additionally, participants reported that these three forms of ethics education helped a great deal to resolve ethical problems encountered in practice. The forms of ethics education that were not frequently used include: Ethics Training Session in Fieldwork that was Separate from Orientation; Attendance at an Ethics Committee Meeting or Participation in an Informal or Formal Ethics Case Consultation; Mentorship with Fieldwork Educator Regarding Ethics; Mentorship with Another Individual within the Fieldwork Setting Regarding Ethics; Ethical Problem Solving Guide, Steps, or Resource; Formal Ethics Rounding in the Fieldwork Setting. Those that received these forms of ethics education most consistently reported that it helped a great deal with resolving ethical problems encountered in practice. Although Ethics Reading Assignment while at Fieldwork Site and Ethics Training in Fieldwork Orientation were not frequently received, those that did receive these forms of ethics education reported that it somewhat helped resolve ethical problems encountered in practice. There were not any other forms of Ethics Education in Clinical Practice Education/Level II Fieldwork noted. See Table 15 for full results. Post-Entry Level Ethics Education The results of the survey showed that a large majority of new practitioners have not taken a Postgraduate Course, Participated in a Formal Ethics Committee, or had a Formal Mentorship Regarding Ethics. However, the participants that did receive these types of education indicated that taking a Continuing Education Course on Their Own and having an Informal Mentorship Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 24 Regarding Ethics helped a great deal, while taking a Postgraduate Course, Participating on an Ethics Committee, and Having a Formal Mentorship did not help. See Table 16 for full results. Confidence in Management of Ethical Problems The survey results showed that the majority of recently graduated OT practitioners feel confident in finding resources in eight out of the nine resource options. The only resource that the majority of participants felt highly confident in knowing was Where to Find Access to the AOTA Code of Ethics (47.5% of the participants). The resource that practitioners reported as being the least confident in was Know Where to Get Written Resources on Solving Ethical Problems (8.3% of participants). See table for full statistical results. See Table 17. Ethical Problem-Solving Resources The review of the survey results showed that the top three resources used a great deal to solve ethical problems were: Relied on Common Knowledge (44.2%); Relied on Past Education to Identify, Assess, and Offer Resolutions (37.8%); and Relied on Personal Experience (35.8%). The three resources with the greatest percentage of not being used were: Talked with an Ethics Committee Member or Members (67.2%); Enrolled in Continuing Education (55.8%); and Talked with a Mentor Outside the Organization/Setting (38.7%). Resources with fairly even distributions of percentage of use were: Looked up Laws (Licensure Act, Third Party Payor Rules, etc.) and Looked up Policies and Procedures. See Table 18. Discussion The purpose of this study was to examine occupational therapists and occupational therapy assistants encounters with ethical problem solving within their first five years of practice through a survey in collaboration with NBCOT. Investigators found that practitioners in Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 25 Adult and Older Adult settings and those who have been NBCOT certified longer experienced more ethical problems than other groups. The most common problems found related to Productivity and Related Issues were Productivity, Billing, and Compromised Care due to Cost Containment. The results from this survey regarding practitioners experiences with issues related to productivity was consistent with previous findings (Hazelwood et al., 2018; Kirschner et al., 2001). Hazelwood et al. (2018) found that new graduates felt challenged by management situations and that their organization prioritized financial needs over quality of care. Similar to Hazelwood et al. (2018), participants in this study noted that they have felt pressure to work off the clock and provide unneeded services to make money. Investigators findings that the participants rated Productivity, Billing, and Compromised Care due to Cost Containment as the top three ethical dilemmas in this section was also consistent with the results of Kirschner et al. (2001) and Foye et al. (2002). The researchers of these studies found that the participants rated pressures as a result of reimbursement as the ethical problem their participants encounter most frequently (Foye et al., 2002; Kirschner et al., 2001). When looking at clinical decision making and professional reasoning, the majority of participants stated that they rarely experienced these types of ethical problems. For those that did experience these issues, respondents reported that issues regarding Disagreement with a Supervisor or Administrator and Client Noncompliance were experienced the most consistently in this category. The prevalence of disagreements with how supervision is handled is similar to previous findings from Kalantari et al. (2015), who found that their participants believed ethical problems arose due to a weakness in supervision systems and how instructions were provided. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 26 Foye et al. (2002) found an ethical area of concern to be a lack of caregiver compliance with the recommended treatment program. In regard to therapeutic relationships within practice, investigators found that the most consistently experienced problem was due to SES of the client and the Client becoming too Attached to the Therapist. This is consistent with previous research that found common ethical problems experienced are related to the Client becoming too Close to the Therapist, which is often illustrated by being offered gifts (Foye et al., 2002; Grisbrooke & Barnitt, 2002; Kassberg & Skr, 2008; Kirschner et al., 2001), and being invited to become more involved in the personal lives of clients; for example, being invited to clients birthday parties (Kassberg & Skr, 2008). The majority of participants in this study stated that they did not confront Bioethical Issues in practice. Investigators were unable to find research regarding occupational therapy practitioners experiences with bioethical issues in practice. It is unclear as to why practitioners do not confront these issues. Given the results of this study and the lack of research on this topic, further investigation could determine if this is due to practitioners being uncomfortable with this topic, not feeling comfortable enough with their own skill set, or if practitioners do not have the tools needed to successfully confront these issues. In regard to ethics education received in OT entry-level education, most participants stated that they had received ethics education in some way. Face-to-face instruction and ethics content interwoven throughout the curriculum were the most common type of ethics education format, with face-to-face found to be the most helpful in solving ethical problems encountered in practice. Majority of participants stated that the most consistent types of ethics education delivery was through lectures, reading assignments, problem-solving guides, formal classroom Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 27 discussion with cohort classmates, informal discussion with classmates, and case studies. Among these, lectures and formal classroom discussion were found to be the least helpful in solving ethical problems in practice. Khatiban et al. (2019) and Limbach and Waugh (2005) found similar results in their studies regarding ethics education, in that content that is taught in a traditional lecture format was less memorable compared to a non-traditional teaching format. When asked about ethics education received during level II fieldwork, participants stated that informal discussion with colleagues and experiencing ethical problems while on fieldwork were the most consistent forms of ethics education they received. These were also the most consistently reported to be the most helpful in dealing with ethical problems in practice. This supports previous literature, with Burkemper et al. (2007) and Dieruf (2004) suggesting that the most helpful way to learn ethics content is through on-site learning during clinical rotations. Participants who stated they have taken a postgraduate course stated that continuing education courses and having informal mentorship in ethics helped a great deal to solve ethical problems, but the majority of participants stated that they have not participated in any of the postgraduate education opportunities. Less than half of the participants stated that they had used professional development discussions with an informal mentor or advisor related to ethics, even though this was listed as one of the most helpful types of education in solving ethical problems in practice. This finding should be further explored to determine why it is not being used as often, even though it is found helpful among new OT practitioners. Hazelwood et al. (2018) and Vanderkaay et al. (2019) also suggest creating a mentorship program to help new practitioners navigate ethical problems they face in practice. These findings distinguish between the benefits of a formal and informal mentorship, which can be used to guide creation of these mentorship Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 28 programs. This finding indicates a gap in postgraduate education that could help solve current ethical problems and prevent further ethical problems in practice. In regard to confidence in management of ethical problems, the majority of participants stated that they felt highly confident knowing where to access most resources regarding ethical problems. Participants stated that they felt most confident finding the AOTA Code of Ethics (2020) when working through ethical problems. The researchers used comparison data to look at the differences in results based on whether a participant is an OT or an OTA. When comparing ethical problems related to Productivity and Related Issues to OTs versus OTAs, investigators found that OTAs experience more ethical problems related to Compromised Care due to Cost Containment than OTs do. This finding could be due to OTAs working in settings that are more prone to ethical problems, e.g. Adults and Older Adults. The power dynamic between OTs and OTAs may also contribute to OTAs experiencing more ethical problems related to Productivity. In a scoping review conducted by Bushby et al. (2015), the researchers support the present studys findings that productivity issues were included within resource and systematic ethical problems of practice; however, investigators were unable to locate studies that examined this difference in productivity ethical problems between OTs and OTAs. This finding therefore adds to the literature in that it can provide further direction on who should also be included in ethics training. Comparison data also examined the differences among Current Primary Practice Setting. One area of comparison data showed that OT practitioners in Adult and Older Adult Settings experience more ethical problems related to Productivity than practitioners who practice in Children and Youth settings. The reason behind this could be due to differences in Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 29 reimbursement requirements in these different settings. AOTA (2017) aimed to address the potentially unethical practices in skilled nursing facilities (SNFs) due to high productivity standards because of priorities to achieve high reimbursement levels instead of meeting the patients needs. Another comparison showed that those who practice in Adult and Older Adult Settings experience more issues related to Noncompliance. This finding could be because adults and older adults are usually highly independent in their own care than other settings, such as children and youth which are more dependent on caregivers. This is inconsistent with previous studies who have found that noncompliance in pediatric settings is high due to relying on parents to incorporate home programs (Cusik et al., 2006; Gajdosik, 2009; Molineux, 1993) and general outpatient settings due to difficulty of home programs and differing understandings of compliance (Gleeson et al., 1991; Kirwin et al., 2002). These studies did not compare noncompliance issues across settings though, and therefore only focused on one setting. Finally, comparison data found that there was a significant difference between Current Primary Practice Setting and if they experience ethical problems within Therapeutic Relationships. Specifically, investigators found that those who practice in Adults and Older Adult settings experience higher levels of ethical problems related to Therapeutic Relationships on average as compared to other settings. Investigators were unable to find research that examined differences between settings regarding ethical problems related to therapeutic relationships. Studies that focused on one specific setting and found prevalent ethical problems in therapeutic relationships were all conducted in a rehabilitation setting (Foye et al., 2002; Kassberg & Skr, 2008; Kirschner et al., 2001). Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 30 Investigators were unable to find literature that examined the relationship between time in practice and different types of ethical problems. This study therefore adds to the literature regarding the level of experience practitioners have and what kinds of ethical problems they are most often experiencing. Such information can provide evidence for the need to provide resources to manage ethical problems to practitioners with more experience too. Investigators compared types of ethical problems to Years Since NBCOT Certification. When comparing Clinical Decision Making and Professional Reasoning ethical problems with Years Since NBCOT Certification, the results trended toward significance. It is possible that there was a Type II error and that the results would be significant if the study were adequately powered. When comparing ethical problems regarding Employer, Employee, and Colleague Relationships to Years Since NBCOT Certification, the results revealed a trend toward significance when looking at ethical problems related to Incompetent, Unsafe, or Unnecesary Practice as compared to Years Since NBCOT Certification. Specifically, participants who received NBCOT certification 1-3 Years prior experienced these issues more consistently than those who received NBCOT certification Less Than 1 Year or 3-5 Years ago. These findings could be a combination of not being in practice long enough to experience these issues and being in practice long enough to gain the experience to avoid these issues in practice. This could explain why the middle group is experiencing these issues more so than the other two groups. Investigators also found a significant difference between experiencing ethical problems related to Client Boundaries and Years Since NBCOT Certification. Specifically, the difference Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 31 was found between NBCOT certification 3-5 Years ago and NBCOT certification Less Than One Year ago. Investigators were unable to find literature that examined the relationship between years since taking the NBCOT and different types of ethical problems. This study therefore adds to the literature to highlight that differences exist in experiences with ethical problems when considering how many years it has been since practitioners have been certified with NBCOT. Implications The results of this study add to the current literature and indicate multiple areas of further research that are needed. Compared to the current literature, this study is unique in determining the most prevalent ethical problems faced compared to the following practitioner demographics: OTs vs. OTAs, Years Since NBCOT Certification, Time in Current Practice Setting, and Region of Practice. In order to combat ethical problems, OT practitioners need more support in the areas of billing, productivity, and cost containment. Additionally, this study indicates that practitioners in Adult and Older Adult settings need to be supported in ethical problems related to productivity and noncompliance of the patients. The results of this study also indicate that practitioners in practice longer may need more support related to ethical problems. To combat these issues, investigators suggest that these practitioners are offered continuing education opportunities targeted at the most common ethical problems identified in this study. Occupational therapy assistants should be offered continuing education targeted at combating ethical problems, especially those related to compromised care. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 32 This study investigated the most helpful ethics education techniques identified by practitioners to add to the literature. To best prepare practitioners to deal with ethical problems, the investigators suggest that face-to-face informal education and experience with clients be utilized to prepare practitioners with less emphasis on formal classroom discussion. This study addressed new areas of interest concerning the benefits of formal versus informal mentorship programs to assist new OT practitioners as they deal with ethical problems in practice. The investigators therefore suggest that practitioners are encouraged to engage in informal mentorship in practice throughout careers, rather than just as new graduates. Areas of future investigation include caregiver noncompliance; ethical problems regarding productivity compared to practice setting; ethical problems related to incompetent, unsafe, or unnecessary practice compared to current practice settings; why practitioners do not confront bioethical issues; what types of education would provide the most support for ethical decision making; why helpful education tactics are used less often; and why there is a difference in experiences of certain ethical problems depending on length of time since taking the NBCOT exam. Limitations While various steps were taken to ensure the accuracy of the study, the investigators acknowledge the limitations that exist. First, the survey was sent to the participants during the beginning of the COVID-19 pandemic. Given the high stress demand in the world at the time, these results may have been affected by the ethical problems surrounding practice during the pandemic. Next, the respondents had to opt into responding, which could have led to a nonresponse bias. Specifically, the practitioners that are more interested in this subject may have Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 33 chosen to respond; therefore, the investigators may not have collected data from those who do not have interest in the topic. On the other hand, there may also have been a response bias, demonstrated by participants possibly being unable to recall information accurately given the detailed questions. Additionally, the respondents may have interpreted the meaning of a question differently than that intended, or they could have chosen responses that do not accurately reflect their thoughts and opinions. Lastly, the investigators originally calculated that 134 participants were needed to significantly power the study; however, investigators concluded with 125 participants after removing incomplete survey respondents. Therefore, the study was slightly underpowered, which could have led to Type II errors with false insignificant results. Conclusion Investigators examined occupational therapists and occupational therapy assistants encounters with ethical problem solving within their first five years of practice through a survey. The results of the study indicate that OTAs experienced more ethical problems related to Compromised Care than OTs and OTs experienced more ethical problems with Therapeutic Relationships than OTAs. Additionally, OT practitioners working in Adult and Older Adult Settings experienced more ethical problems than practitioners in Children and Youth settings. Lastly, OT practitioners who have been NBCOT certified for longer reported experiencing significantly more ethical problems. The results outlined in this study present multiple areas that add to the current literature as well as many new areas to explore in future research. This study contributes to the understanding of ethical problems in occupational therapy by examining the differences between OTs and OTAs, Current Primary Practice Settings, and Years Since NBCOT Certification in areas of what ethical problems are being experienced, how often they are Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 34 experienced, and the education that was received. The current study therefore highlights future areas of research regarding ethical problems, as well as emphasizing the need for ethics education. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 35 References Accreditation Council for Occupational Therapy Education. (2018). 2018 Accreditation Council for Occupational Therapy Education (ACOTE) Standards and Interpretive Guide (effective July 31, 2020). 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Teaching ethics using small-group, problem-based Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 42 learning. Journal of Medical Ethics, 23(5), 315-318. https://doi.org/10.1136/jme.23.5.315 VanderKaay, S., Jung, B., Letts, L., & Moll, S. E. (2019). Continuing competency in ethical decision making: An interpretive description of occupational therapists perspectives. Canadian Journal of Occupational Therapy, 86(3), 209219. Venglar, M., & Theall, M. (2007). Case-Based Ethics Education in Physical Therapy. Journal of Scholarship of Teaching and Learning, 7(1), 64-76. Willis, G. B. (2004). Cognitive Interviewing: A Tool for Improving Questionnaire Design. SAGE Publications. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 43 Table 1 Demographic Characteristics of Sample Variable (n Responding) n(%) Years Since NBCOT Certification (125) Less Than 1 Year 29 (23.2) 1-3 Years 55 (44) 3-5 Years 41 (32.8) Current or Most Recent OT Practice (125) Occupational Therapist (OT) 104(83.2) Occupational Therapy Assistant (OTA) 21(16.8) Degree (125) Associates 21(16.8) Bachelors 0(0) Masters 63(50.4) Doctoral 41(32.8) Region Obtained Entry-Level Degree for Current Practice (125) West 33(26.4) Midwest 47(37.6) North East 25(20) South 31(24.8) Hawaii, Alaska, Puerto Rico, Washington DC, US territories 1(0.08) Region for Current Practice (125) West 33(26.4) Midwest 33(26.4) North East 15(12) South 40(32) Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 44 Hawaii, Alaska, Puerto Rico, Washington DC, US Territories 4(2.7) Current Primary Practice Setting (125) Children and Youth 41(32.8) Health and Wellness 0(0) Mental Health 5(4) Rehab and Disability 55(44) Productive Aging 13(10.4) Work and Industry 0(0) Emerging 2(1.6) Academic 1(0.8) Admin or Management 1(0.8) Not Working in OT 3(2.4) Other 4(3.2) Time in Current Practice Setting (125) Less Than 1 Year 46(36.8) 1-3 Years 51(40.8) 3-5 Years 26(20.8) Other 2(1.6) Previous Primary Practice Setting (125) Children and Youth 9(7.2) Health and Wellness 0(0) Mental Health Rehab and Disability 2(1.6) 33(26.4) Productive Aging 4(3.2) Work and Industry 1(0.8) Emerging 0(0) Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 45 Academic 0(0) Admin or Management 0(0) Not Working in OT 12(9.6) No Previous Practice Setting 62(49.6) Other 2(1.6) Region for Previous Practice Setting (51) West 11(8.8) Midwest 14(11.2) North East 5(4) South 19(15.2) Hawaii, Alaska, Puerto Rico, Washington DC, US territories, Military 1(0.8) No Previous Practice Setting 1(0.8) Time in Previous Practice Setting (51) Less Than 1 Year 23(18.4) 1-3 Years 22(17.6) 3-5 Years 2(1.6) Other 2(1.6) Gender (125) Male Female Trans Male Trans Female 6(4.8) 115(92) 1(0.8) 0(0) Non-binary 2(1.6) Prefer Not to Answer 1(0.8) Primary Race (125) Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 46 White 108(86.4) Black 4(3.2) Asian/Pacific Islander 5(4) American Indian/Alaskan Native 0(0) Biracial/Multi-racial 3(2.4) Prefer Not to Answer 3(2.4) Other 2(1.6) Ethnicity (125) Hispanic or Latino Not Hispanic or Latino Prefer Not to Answer 7(5.6) 114(91.2) 4(3.2) Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 47 Table 2 Internal Consistency of Scale for Ethical Problems Survey. Subscale Number of Items Mean SD Cronbachs Productivity and Related Issues (n=120) 8 19.28 6.348 .845 Clinical Decision Making & Ethical Reasoning; Ethical Problems (n=120) 12 24.78 5.797 .796 Employer/ Employee/ Colleague Relationships; (Coworkers, Supervisor, Supervisees) (n=123) 13 18.10 4.943 .800 Therapeutic Relationships (n=120) 14 20.23 5.559 .840 Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 48 Table 3 Encounters with Ethical Problems - Productivity and Related Issues Item (n)* 1** n(%) 2 n(%) 3 n(%) 4 n(%) 5 n(%) Median Productivity (123) 20(16.3) 23(18.7) 30(24.4) 29(23.6) 21(17.1) 3.0 Billing (125) 23(18.4) 32(25.6) 39(31.2) 22(17.6) 9(7.2) 3.0 36(28.8) 29(23.2) 10(8.1) 4(3.2) 2.0 7(5.6) 2.0 Reimbursement (124) 45(36) Documentation (124) 15(12.1) 50(40.3) 33(26.6) 19(15.3) Compromised Care due to Cost Containment (123) 26(21.1) 35(28.5) 30(24.4) 19(15.4) 13(10.6) 3.0 Treatment or Services Withheld or Terminated due to Insufficient Clinical or Staffing Resources (125) 47(37.6) 42(33.6) 19(15.2) Treatment or Services Withheld or Terminated due to Financial Considerations (125) 45(36) A Practitioner did not Tell the Truth in Written or Verbal Communication; or, did not Cite Others' Work Appropriately (Violation of Veracity) (125) 53(42.4) Other Ethical Problems Concerning Productivity and Related Issues (Please Describe Below) (91) 53(58.2) 40(32) 12(9.6) 5(4.0) 2.0 21(16.8) 13(10.4) 6(4.8) 2.0 3(2.4) 2.0 47(37.6) 17(13.6) 7(7.7) 5(4.0) 10(11.0) 11(12.1) 10(11.0) 1.0 Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 49 2.3750 Note: * = Please indicate the degree to which you have experienced ethical problems in each of the following areas, since you have been certified. ** = 1 - never (0%); 2 - rarely (1-25%); 3 occasionally (26-50%); 4 - frequently (51-75%); 5-consistently(76+%). Italics indicate highest medians. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 50 Table 4 Productivity and Related Issues - OT and OTA Comparisons by Demographics Variable (n) Independent Samples Median Test Value (Degrees of Freedom) Mann-Whitney U Test Productivity and Related Issues Total Scale Mean (120) .365(1) .103 Productivity (123) .338(1) .350 Billing (125) .068(1) .168 Compromised Care due to Cost Containment (123) .027(1) .054* Note: Significant items (p 0.05) are in italics. *=trended toward significance. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 51 Table 5 Productivity and Related Issues - Settings, Region of Current Practice, Years since NBCOT Certification Comparisons by Demographics Variable (n) Kruskal-Wallis p-value Setting Types Compared to Productivity and Related Issues Total Scale Mean (120) .044 Post-hoc Bonferroni Correction Adjusted Significance Children & Youth Settings vs. Adult and Older Adult Settings .044 Children & Youth Settings vs. Other Settings .460 Adult and Older Adult Settings vs. Other Settings 1.000 Setting Types Compared to Productivity Item (120) .000 Children & Youth Settings vs. Adult and Older Adult Settings .000 Children & Youth Settings vs. Other Settings .273 Adult and Older Adult Settings vs. Other Settings 1.000 Setting Types Compared to Billing Item (122) .501 - Setting Types Compared to Compromised Care due to Cost Containment Item (120) .156 - Region of Practice Compared to Productivity and Related Issues Total Scale Mean (120) .206 Region of Practice Compared to Productivity Item (123) .253 Region of Practice Compared to Billing Item (123) .447 Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 52 Region of Practice Compared to Compromised Care due to Cost Containment Item (125) .015 - Hawaii, Alaska, Puerto Rico, Washington DC, Military, Territories vs. West - .026 .005 - Less Than 1 Year compared to 1-3 Years - .026 Less Than 1 Year compared to 3-5 Years - .005 1-3 Years compared to 3-5 Years - 1.000 Years Since NBCOT Certification Compared to Productivity Item (123) .025 - Less Than 1 Year compared to 1-3 Years - .092 Less Than 1 Year compared to 3-5 Years - .025 1-3 Years compared to 3-5 Years - 1.000 Years Since NBCOT Certification Compared to Billing Item (123) .048 - Less Than 1 Year compared to 1-3 Years - .047 Less Than 1 Year compared to 3-5 Years - .180 1-3 Years Compared to 3-5 Years - 1.000 Years Since NBCOT Certification Compared to Productivity and Related Issues Total Scale Mean (120) Years Since NBCOT Certification Compared to Compromised Care due to Cost Containment Item (123) .262 Note: Significant items (p 0.05) are in italics. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 53 Table 6 Encounters with Ethical Problems - Clinical Decision Making and Professional Reasoning Item*(n) 1** n(%) 2 n(%) 3 n(%) 4 n(%) 5 n(%) Median Disagreement with Client/Family (124) 13(10.5) 69(55.6) 32(25.8) 7(5.6) 3(2.4) 2.0 Disagreement with Interprofessional Team Member(s) (124) 15(12.1) 60(48.4) 36(29) 9(7.3) 4(3.2) 2.0 Disagreement with Supervisor or Administrator (123) 17(13.8) 40(32.5) 32(26) 24(19.5) 10(8.1) 3.0 Disagreement with OT Co-worker (123) 37(30.3) 65(53.3) 12(9.8) 6(4.9) 2(1.6) 2.0 4(3.2) 3.0 Unwillingness or Inability of Client to Accept or Comply with Medical Recommendations or Intervention Plan (124) Practitioner Knowing or Suspecting that Client is Experiencing Abuse or Neglect (124) Client Substance Abuse (123) Suspecting that Client Has Been Medically Misdiagnosed (124) 9(7.3) 44(35.5) 52(41.9) 15(12.1) 52(41.9) 64(51.6) 59(48) 51(41.5) 4(3.2) 3(2.4) 1(0.8) 2.0 7(5.7) 6(4.9) 0 2.0 6(4.8) 1(0.8) 2.0 45(36.3) 59(47.6) 13(10.5) Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 54 Suspecting that Client Has Been Medically Mismanaged (124) 33(26.6) 63(50.8) 18(14.5) 9(7.3) 1(0.8) 2.0 Ethical Conflicts Related to Resource Allocation (124) 39(31.5) 48(38.7) 22(17.7) 10(8.1) 5(4) 2.0 Ethical Conflicts Related to Medical Errors (124) 57(46) 52(41.9) 12(9.7) 1(0.8) 2(1.6) 2.0 Ethical Conflicts Related to End-of-Life Care (124) 60(48.4) 36(29) 23(18.5) 4(3.2) 1(0.8) 2.0 Other (write-in) (81) 64(76.2) 10(11.9) 7(8.3) 1(1.2) 2(2.4) 1.0 Note: * = Please indicate the degree to which you have experienced ethical problems in each of the following areas, since you have been certified. ** = 1 - never (0%); 2 - rarely (1-25%); 3 occasionally (26-50%); 4 - frequently (51-75%); 5-consistently(76+%). Italics indicate highest medians. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 55 Table 7 Clinical Decision Making - OT and OTA Comparisons by Demographics Variable (n) Mann-Whitney U Test Clinical Decision Making Total Scale Mean (120) .757 Clinical Decision Making Supervision* Item (123) .184 Clinical Decision Making Noncompliance** Item (124) .133 Note: Significant items (p 0.05) are in italics. *Supervision = Ethical problems related to disagreement with supervisor or administrator **Noncompliance = Unwillingness or inability on the part of the client to accept or comply with medical recommendations or intervention plan Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 56 Table 8 Clinical Decision Making - Region of Current Practice, Years since NBCOT Certification Comparisons by Demographics Variable (n) Kruskal-Walli s p-value Post-hoc Pairwise Comparisons Adjusted Significance p-value Setting Types Compared to Clinical Decision Making Total Scale Mean (118) .067 - Setting Types Compared to Clinical Decision Making Supervision* Item (123) .772 - Setting Types Compared to Clinical Decision Making Noncompliance** Item (123) .006 - Pediatric Settings vs. Adult and Older Adult Settings - .013 Pediatric Settings vs. Other Settings - .370 Adult and Older Adult Settings vs. Other Settings - .011 Region of Current Practice Compared to Clinical Decision Making Total Scale Mean (120) .845 - Region of Current Practice Compared to Clinical Decision Making Supervision Item (123) .251 - Region of Current Practice Compared to Clinical Decision Making Noncompliance Item (124) .264 - Years Since NBCOT registration Compared to Clinical Decision Making Total Scale (120) .000 - Less Than 1 Year compared to 1-3 Years - .000 Less Than 1 Year compared to 3-5 Years - .000 Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 1-3 Years compared to 3-5 Years 57 - 1.000 Years Since NBCOT Certification Compared to Clinical Decision Making Supervision Item (123) .091 - Years Since NBCOT Certification Compared to Clinical Decision Making Noncompliance Item (124) .064 - Note: Significant items (p 0.05) are in italics. *Supervision = Ethical issues related to disagreement with supervisor or administrator **Noncompliance = Unwillingness or inability on the part of the client to accept or comply with medical recommendations or intervention plan Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 58 Table 9 Encounters with Ethical Problems - Employer/Employee/Colleague Relationships. Item*(n) 1** n(%) 2 n(%) 3 n(%) 4 n(%) 5 n(%) Median Impaired Performance of a Co-worker, Supervisor, or Supervisee due to Suspected Substance Abuse. (125) 107(85.6) 16(12.8) 1(0.8) 1(0.8) 0(0) 1.0 Impaired Performance of a Co-worker, Supervisor, or Supervisee due to Suspected Mental Health or Related Issues (124) 72(58.1) 36(29) 12(9.7) 3(2.4) 1(0.8) 1.0 Impaired Performance of Co-worker, Supervisor, or Supervisee due to Physical or Cognitive Impairments (124) 96(77.4) 23(18.5) 2(1.6) 2(1.6) 1(0.8) 1.0 Evidence of Incompetent, Unsafe, or Unnecessary Practice by a Co-worker, Supervisor, or Supervisee (124) 51(41.1) 45(36.3) 20(16.1) 6(4.8) 2(1.6) 2.0 Inappropriate Consensual Romantic or Sexual Relationships within the Work Group that Negatively Impact Work Group Function (124) 112(90.3) 8(6.5) 3(2.4) 0(0) 1(0.8) 1.0 88(71) 30(24.2) 5(4) 1(0.8) 0(0) 1.0 Sexual Harassment in the Workplace (Self or Others) (124) Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS Forms of Harassment Other than Sexual in the Workplace (Self or Others) (124) 80(64.5) Gender and/or Sexual Identity Issues Arising Between Employees (124) 59 31(25) 8(6.5) 5(4.0) 0(0) 1.0 107(86.3) 13(10.5) 3(2.4) 1(0.8) 0(0) 1.0 Discrimination, Bias, Inequality, or Other Issues Related to Race, Ethnicity, Religion, or Socioeconomic Status in the Workplace (124) 72(58.1) 37(29.8) 10(8.1) 2(1.6) 3(2.4) 1.0 Employee Practicing Without a License (124) 117(94.4) 6(4.8) 1(0.8) 0(0) 0(0) 1.0 Employee Practicing Without Appropriate Supervision (124) 76(61.3) 31(25) 11(8.9) 3(2.4) 3(2.4) 1.0 Non-OT/OTA Providing Direct OT Services (124) 103(83.1) 15(12.1) 4(3.2) 2(1.6) 0(0) 1.0 A Practitioner Did Not Obey the Law, Policies, or Job Requirement (123) 80(65) 34(27.6) 6(4.9) 2(1.6) 1(0.8) 1.0 Other Ethical Issues Related to Co-workers, Supervisors, or Supervisees (77) 61(79.2) 8(10.4) 3(3.9) 2(2.6) 3(3.9) 1.0 Note: * = Please indicate the degree to which you have experienced ethical problems in each of the following areas, since you have been certified. ** = 1 - never (0%); 2 - rarely (1-25%); 3 occasionally (26-50%); 4 - frequently (51-75%); 5-consistently(76+%). Italics indicate highest medians. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 60 Table 10 Employer/Employee and Colleague Relationships - Comparisons by OT/OTA, Setting Types, Region of Current Practice, and Years since NBCOT Certification MannVariable (n) KruskalPost-hoc Pairwise Whitney Wallis Comparisons U-Test P-value Adjusted Significance p-value OT and OTA Compared to Employer/Employee and Colleague Relationships Total Scale Mean (123) .323 OT and OTA Compared to Employer/Employee and Colleague Relationships: Incompetent, Unsafe, or Unnecessary Practices Item (124) .599 Settings Compared to Employer/Employee and Colleague Relationships Total Scale Mean .385 - Settings Compared to Employer/Employee and Colleague Relationships: Incompetent, Unsafe, or Unnecessary Practices Item .096* - Region of Current Practice Compared to Employer/Employee and Colleague Relationships Total Scale Mean .876 - Region of Current Practice Compared to Employer/Employee and Colleague Relationships: Incompetent, Unsafe, or Unnecessary Practices Item .488 - Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS Years Since NBCOT Certification Compared to Employer/Employee and Colleague Relationships Total Scale Mean (123) 61 0.011 - Less Than 1 Year compared to 1-3 Years .016 Less Than 1 year compared to 3-5 Years .027 1-3 Years compared to 3-5 Years 1.00 Years Since NBCOT Certification Compared to Employer/Employee and Colleague Relationships: Incompetent, Unsafe, or Unnecessary Practices Item (124) .057* Note: Significant items (p 0.05) are in italics. *=trended toward significance. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 62 Table 11. Encounters with Ethical Problems: Therapeutic Relationships Item* (n) 1** n(%) 2 n(%) 3 n(%) 4 n(%) 5 n(%) Median Inappropriate Consensual Romantic or Sexual Relationships with Clients (124) 122(98.4) 2(1.6) 0 0 0 1.0 Right to Informed Decision Making (124) 84(67.7) 31(25.0) 8(6.5) 1(0.8) 0 1.0 Client Becomes Too Attached to the Practitioner (124) 47(37.9) 53(42.7) 17(13.7) 6(4.8) 1(0.8) 2.0 Practitioner Becomes Too Attached to the Client (124) 79(63.2) 38(30.4) 6(4.8) 1(0.8) 0 1.0 Did Not Provide Client with Due Care (124) 76(61.3) 40(32.3) 5(2.4) 3(2.4) 0 1.0 Practitioner Harms Client (123) 92(74.8) 31(25.2) 0 0 0 1.0 Client Experiences Sexual Harassment (124) 114(91.9) 9(7.3) 0 1(0.8) 0 1.0 Client Intentionally or Uninternetionally Commits Sexual Harassment (124) 64(51.6) 46(37.1) 11(8.8) 3(2.4) 0 1.0 Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 63 Client Experiences Gender or Sexual Indenity Discrimination (123) 98(79.7) 23(18.7) 2(1.6) 0 0 1.0 Client Commits Gender or Sexual Indenity Discrimination (124) 86(69.4) 23(18.5) 12(9.7) 3(2.4) 0 1.0 Client Experiences Discrimination Based on Race, Ethnicity, or Religion (124) 79(63.7) 33(26.6) 6(4.8) 4(3.2) 2(1.6) 1.0 Client Commits Discrimination Based on Race, Ethnicity, or Religion (124) 63(50.8) 35(28.2) 21(16.9) 5(4.0) 0 1.0 Client Experiences Discrimination due to SES (124) 63(52.1) 39(32.2) 10(8.3) 8(6.6) 1(0.8) 1.0 Client Commits Discrimination due to SES (124) 88(71.0) 28(22.6) 3(2.4) 4(3.2) 1(0.8) 1.0 Other (please write in) (72) 64(88.9) 4(6.9) 2(2.8) 1(1.4) 0 1.0 Note: * = Please indicate the degree to which you have experienced ethical problems in each of the following areas, since you have been certified. ** = 1 - never (0%); 2 - rarely (1-25%); 3 occasionally (26-50%); 4 - frequently (51-75%); 5-consistently(76+%). Italics indicate highest medians. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 64 Table 12 Therapeutic Relationships Comparisons by Groups: OT/OTA, Setting Types, Region of Current Practice, and Years since NBCOT Certification Mann- KruskalVariable (n) Post-hoc Pairwise Whitney Wallis Comparisons Adjusted U test p-value significance p-value OT and OTA Compared to Therapeutic Relationships Total Scale .245 OT and OTA Compared to Therapeutic Relationships Item Client Becomes Too Attached to the Practitioner (Mann-Whitney U Test, n=124) .007 Setting Types Compared to Therapeutic Relationships Total Scale Mean (118) .003 - Children & Youth Settings vs. Adult and Older Adult Settings - .005 Children & Youth Settings vs. Other Settings - .200 Adult and Older Adult Settings vs. Other Settings - 1.000 Setting Types Compared to Therapeutic Relationships Item Client Becomes Too Attached to the Practitioner (124) .981 - Region of Current Practice Compared to Therapeutic Relationships Total Scale Mean (120) .878 - Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 65 Region of Current Practice Compared to Therapeutic Relationships Item Client Becomes Too Attached to the Practitioner (124) .132 Years Since NBCOT Certification Compared to Therapeutic Relationships Total Scale Mean (120) .000 - Less Than 1 Year compared to 1-3 Years - .001 Less Than 1 Year compared to 3-5 Years - .001 1-3 Years compared to 3-5 Years - 1.000 Years Since NBCOT Certification Compared to Therapeutic Relationships Item Client Becomes Too Attached to the Practitioner (124) .191 Variable (n) Kruskal-Walli s p-value Post-hoc Pairwise Comparisons adjusted significance p-value Setting Types Compared to Therapeutic Relationships Total Scale Mean (118) .003 - - .005 Pediatric Settings vs. Adult and Older Adult Settings Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 66 Pediatric Settings vs. Other Settings - .200 Adult and Older Adult Settings vs. Other Settings - 1.000 Setting Types Compared to Therapeutic Relationships Item Client Becomes Too Attached to the Practitioner (124) .981 - Years since NBCOT Certification Compared to Therapeutic Relationships Total Scale Mean (120) .000 - Less Than 1 Year compared to 1-3 Years - .001 Less Than 1 Year compared to 3-5 Years - .001 1-3 Years compared to 3-5 Years - 1.000 Years Since NBCOT Certification Compared to Therapeutic Relationships Item Client Becomes Too Attached to the Practitioner (124) .191 Region of Current Practice Compared to Therapeutic Relationships Total Scale Mean (120) .878 - OT and OTA Compared to Therapeutic Relationships Item Client Becomes Too Attached to the Practitioner (Mann-Whitney U Test, n=124) .007 n/a Note: Significant items (p 0.05) are in italics. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 67 Table 13. Bioethical Issues (n=123) Item* n(%) Euthanasia 11 (8.9) Abortion 2 (1.6) Eugenics* 2 (1.6) Genetic Engineering for Treatment 2 (1.6) Organ donation 7 (5.7) Procreation Through Scientific Means 1 (0.8) Other** 4 (3.3) I Have Not Experienced Any of These 102 (82.9) *Eugenics definition: Bioengineering for procreation **COVID-19 prevention and utilizing proper PPE in the workplace; birth control for children with severe autism to avoid dealing with menstruation; pain management; decisions regarding potentially life saving procedures that come with social stigma (such as amputation); suicide/end-of-life care. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 68 Table 14. Ethics Preparation: Entry-level (Classroom) Education Item* (n) Number (%) Reporting Yes* Median Helpfulness ** Ethics Lecture (123) 116 (94.3) 1.0 Formal Classroom Discussion with Cohort Classmates (123) 115 (93.5) 1.0 Reading Assignments About Ethics (122) 109 (89.3) 1.0 Ethics Case Studies (123) 105 (85.4) Informal Discussion with Cohort Classmates (121) 103 (85.1) 1.0 Ethical Problem Solving Guide, Steps, or Resources (123) 100 (81.3) 1.0 Ethics Role Playing (122) 80 (65.0) 1.0 Ethics Exam (123) 80 (65.0) 1.0 Interprofessional Education Experience in the Classroom Regarding Ethics (121) 65 (51.2) 1.0 Professional Development Discussion with Mentor or Advisor Related to Ethics (121) 55 (45.5) 2.0 Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 69 Interprofessional Education Experience Outside the Classroom Regarding Ethics (121) 52 (43.0) 2.0 Professional Conference Session Related to Ethics While in OT School (121) 25 (20.7) 2.0 Participation in a Student Organization Session While in School Related to Ethics (121) 25 (20.7) 2.0 3 (6.8) 2.0 Other (please write in) (41) Note: *Participants were asked, Did you receive this type of ethics education in your entry-level (classroom) education? 1=Yes, 2=No, 3=Not sure. **Participants were asked, "If yes: How well did this type of education help you learn to resolve ethical problems you have encountered in practice?" 1=Did not help, 2=Helped somewhat, 3=Helped a great deal, 4= N/A Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 70 Table 15. Ethics Preparation: Level II Fieldwork Clinical Practice Education Item* (n) Number (%) Reporting Yes* Median Helpfulness** Informal Discussion with OT Colleagues in Fieldwork Setting Regarding Ethics (121) 75 (62) 3.0 Experience with Clients in Fieldwork Setting Involving Ethical Issues or Problems (121) 73 (60.3) 3.0 Informal Discussion with Interprofessional Colleagues in Fieldwork Setting Regarding Ethics (121) 59 (48.8) 3.0 Ethics Training in Fieldwork Orientation (121) 56 (46.3) 3.0 Mentorship with Fieldwork Educator Regarding Ethics (122) 56 (45.9) 3.0 Ethical Problem Solving Guide, Steps, or Resource (121) 27 (22.3) 4.0 Mentorship with Another Individual Within the Fieldwork Setting Regarding Ethics (121) 26 (21.5) 4.0 Ethics Training Session in Fieldwork That was Separate From Orientation (121) 22 (18.2) 4.0 Ethics Reading Assignment While at Fieldwork Site (123) 22 (17.9) 4.0 Formal Ethics Rounding in the Fieldwork Setting (121) 14 (11.6) 4.0 Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS Attendance at an Ethics Committee Meeting or Participation in an Informal or Formal Ethics Case Consultation (122) Other (please write in) (47) 71 12 (9.8) 4.0 0 (0) 4.0 Note: *Participants were asked, Did you receive this type of ethics education in your clinical practice education/Level II Fieldwork? 1=Yes, 2=No, 3=Not sure. **Participants were asked, "If yes: how well did this type of education help you learn to resolve ethical problems you have encountered in practice?" 1=Did not help, 2=Helped somewhat, 3=Helped a great deal, 4= N/A Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 72 Table 16. Ethics Preparation: Ethics Education Since Becoming Initially Certified Item* (n) Number (%) Reporting Yes* Helpfulness Median** Read an Occupational Therapy Professional Article on Ethics (121) 116 (94.3) 1.0 Read an Interprofessional or Non-professional Article on Ethics (121) 115 (93.5) 1.0 Completed Ethics Continuing Education Required by State/Territory License (121) 109 (89.3) 1.0 Completed Ethics Continuing Education Required by My Practice Setting (121) 105 (85.4) Completed Ethics Continuing Education Required by a Professional Association or Specialty Certification (119) 103 (85.1) 1.0 Completed Ethics Continuing Education That Sought on My Own (121) 100 (81.3) 1.0 Completed a Post-Graduate Level Course on Ethics at a College or University (121) 80 (65.0) 1.0 Participation in an Organizations Ethics Committee or Ethics Consultation Service (121) 80 (65.0) 1.0 Sought Formal Ethics Mentorship (121) 65 (51.2) 1.0 Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS Sought Informal Ethics Mentorship (121) 55 (45.5) 73 2.0 Note: *Participants were asked, Did you receive this type of ethics education since becoming initially certified? 1=Yes, 2=No, 3=Not sure. **Participants were asked, "If yes: How well did this type of education help you learn to resolve ethical problems you have encountered in practice?" 1=Did not help, 2=Helped somewhat, 3=Helped a great deal, 4= N/A Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 74 Table 17. Understanding and Confidence with Ethical Problem Solving Item* (n) 1** n(%) 2** n(%) 3** n(%) 4** n(%) 5** n(%) Median I Can Adequately Manage Ethical Problems in My Current Practice Setting (120) 3 (2.5) 18 (15) 18 (15) 66 (55) 15 (12.5) 4 I Understand How to Use an Ethical Problem Solving Theory, Guide, Steps, or Other Method to Help Work Through Ethical Problems in Practice (120) 7 (5.8) 12 (10) 37 (30.8) 51 (42.5) 13 (10.8) 4 I Know Where to Find and Access the AOTA Code of Ethics (120) 1 (0.8) 2 (1.7) 10 (8.3) 50 (41.7) 57 (47.5) 5 I Know Where to Find My State or Territory's Occupational Therapy Practice Act (120) 6 (5) 6 (5) 17 (14.2) 47 (39.2) 44 (36.6) 4 I Know Where to Find My Practice Setting's Policies and/or Procedures, and/or Other Resources, Related to Ethical Problem Management or Resolution (120) 7 (5.8) 14 (11.7) 32 (26.7) 46 (38.3) 21 (17.5) 4 I Know How to Bring an Ethics Issue Before an Ethics Committee at My Facility, in My State, and/or With My National Association 17 (14.2) 35 (29.2) 25 (20.8) 28 (23.3) 15 (12.5) 2 Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS I Know Where to Get Written Resources on Solving Ethical Problems (120) 75 10 (8.3) 24 (20) 27 (22.5) 47 (39.2) 12 (10) 4 I Know Where to Find Individuals Within My Work Setting With Whom I Can Discuss Ethical Problems (120) 6 (5) 12 (10) 13 (10.8) 57 (47.5) 32 (26.7) 4 I Know Where to Find Individuals Outside of My Work Setting With Whom I Can Discuss Ethical Problems (120) 5 (4.2) 20 (16.7) 13 (10.8) 54 (45) 28 (23.3) 4 I Know Where to Find Continuing Education Regarding Ethics (120) 2(1.7) 12(10) 21(17.5) 54 (45) 31 (25.8) 4 Other (please write in) (31) 7(22.6) 1(3.2) 17(54.8) 3(9.7) 3(9.7) 3 Note: * =Participants were asked Please rank the following statements on a scale from "I am not confident" to "I am highly confident. ** = 1 - I am not confident that I am able to do this; 2 - I am unsure that I am able to do this; 3 - I am neutral regarding whether I am able to do this; 4 - I am confident that I am able to do this; 5 - I am highly confident that I am able to do this. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 76 Table 18. Understanding and Confidence with Ethical Problem Solving Item* (n) 1** n(%) 2** n(%) 3** n(%) 4** n(%) 5** n(%) Median Relied on Personal Experience (120) 0(0) 6(5) 26(21.7) 45(37 43(35. .5) 8) 4.0 Relied on Common Knowledge (120) 1(0.8) 4(3.3) 16(13.3) 46(38 53(44. .3) 2) 4.0 Relied on Past Education to Identify, Assess, Offer Resolutions (119) 2(1.7) 10(8.4) 16(13.4) 46(38 45(37. .7) 8) 4.0 Talked With a Supervisor (119) 9(7.6) 14(11.8) 24(20.2) 36(30 36(30. .3) 3) 4.0 Talked With an Ethics Committee Member or Members (119) 80(67.2) 22(18.5) 7(5.9) 6(5.0) 4(3.4) 1.0 Talked With a Mentor Within the Organization/Setting (120) 27(22.5) 24(20.0) 10(8.3) 36(30 23(19. .0) 2) 3.0 Talked With a Colleague Within the Organization/Setting (120) 5(4.2) 17(14.2) 26(21.7) 41(34 31(25. .2) 8) 4.0 Talked With a Mentor Outside the Organization/Setting (119) 46(38.7) 21(17.6) 14(11.8) 15(12 23(19. .6) 3) 2.0 Talked With a Colleague Outside the Organization/Setting (120) 32(26.7) 24(20.0) 19(15.8) 25(20 20(16. .8) 7) 3.0 Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 77 Looked up Policies and Procedures (120) 15(12.5) 30(25.0) 26(21.7) 31(25 18(15. .8) 0) 3.0 Looked up Laws (Licensure Act, Third Party Payor Rules, etc.) (120) 26(21.7) 22(18.3) 30(25.0) 21(17 21(17. .5) 5) 3.0 Looked up a Code of Ethics (120) 23(19.2) 29(24.2) 29(24.2) 21(17 18(15. .5) 0) 3.0 Looked up Other Resource Materials (120) 30(25.0) 31(25.8) 29(24.2) 18(15 12(10. .0) 0) 2.0 Enrolled in Continuing Education (120) 67(55.8) 17(14.2) 18(15.0) 13(10 .8) 5(4.2) 1.0 Other (please write in) (34) 30(88.2) 1(2.9) 1.0 0(0) 3(8.8) 0(0) Note: * =Participants were asked When encountering an ethical problem in practice, how much did you rely on each of the following to decide on a course of action to resolve the ethical problem?. ** = 1 - None at all; 2 - A little; 3 - A moderate amount; 4 - A lot; 5 - A great deal. Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 78 Table 19. Significant Results from Group Comparisons on Ethical Problems Confronted in Practice Significant Items Groups OT/OTA (MannWhitney U Test) Region of Current Practice (KruskalWallis Test) Years since NBCOT (Kruska l-Wallis Test) Settings (KruskalWallis Test) Productivity Total Scale Mean - - .005 .044 Productivity Item - - .025 .000 Billing Item - - .048 - .054* .015 - - Clinical Decision Making Total Scale Mean - - .000 .067 Clinical Decision Making Supervision Item - - .091 - Clinical Decision Making Noncompliance Item - - .064 .006 Employer/Employee/Client Relationships Total Scale Mean - - .011 - Employer/Employee/Client Relationships Incompetence Item - - .057 .096 Therapeutic Relationships Total Scale Mean - - .000 .003 Therapeutic Relationships Client Attached to Practitioner Item .007 - - - Compromised Care Item Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 79 Appendix A. Survey Questions. https://drive.google.com/file/d/1PDOjZIbc-J-zmzZ_HFXHnwfO8D2sSsrl/view?usp=sharing Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 ETHICAL PROBLEMS FIRST FIVE YEARS 80 Appendix B. Recruitment Email. https://drive.google.com/file/d/1_VDxSc_RK18_hao_WYe-bV4POCcKdnzb/view?usp=sharing Doc ID: 6e939d9a65d98da8eba78b30b1d080ec085cfe76 Audit Trail Title Howard Research Group Final Manuscript File Name Final Write-Up Et...st Five Years.pdf Document ID 6e939d9a65d98da8eba78b30b1d080ec085cfe76 Audit Trail Date Format MM / DD / YYYY Status Completed 12 / 15 / 2021 Sent for signature to Brenda S. Howard (howardbs@uindy.edu) 19:58:18 UTC and Kate E. DeCleene Huber (decleenek@uindy.edu) from rettera@uindy.edu IP: 199.8.28.36 12 / 15 / 2021 Viewed by Brenda S. Howard (howardbs@uindy.edu) 20:09:03 UTC IP: 199.8.28.36 12 / 15 / 2021 Signed by Brenda S. Howard (howardbs@uindy.edu) 20:09:33 UTC IP: 199.8.28.36 12 / 16 / 2021 Viewed by Kate E. DeCleene Huber (decleenek@uindy.edu) 14:59:21 UTC IP: 199.8.28.36 12 / 16 / 2021 Signed by Kate E. DeCleene Huber (decleenek@uindy.edu) 14:59:34 UTC IP: 199.8.28.36 12 / 16 / 2021 The document has been completed. 14:59:34 UTC  ...

... Exploring Factors Related to Foster Parent Retention Kristen Dyson July 2021 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 DCE advisor: Taylor McGann, Assistant Professor Running head: EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 2 Abstract Introduction: Burnout rates of foster parents is an issue across the country, with agencies such as The Villages of Indiana facing low retention levels for foster parents. My doctoral capstone experience involved providing additional training opportunities for foster parents to increase self-efficacy in the hopes of reducing effects of burnout in order to improve retention at this agency. Methods: Survey methodology was utilized to anonymously obtain foster parents perceptions of the training they received before and after becoming foster parents. Results: The results of the survey indicated that the majority of training provided to foster parents was helpful. Three formal presentations were given to foster parents to increase knowledge based on foster parent answers and agency staff perceptions. Due to low participation, an additional presentation was given to agency staff to solicit feedback on how to improve the presentations for future foster parent audiences. Discussion: Foster care staff indicated the presentations provided to foster parents as being helpful to the families they serve. Additional training, including information and access to more resources, may help to increase retention rates of foster parents by helping them to feel equipped in their foster parent role (Cooley & Petren, 2011; Geiger, Hayes, & Leitz, 2013). EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 3 Exploring Factors Related to Foster Parent Retention Foster care is a temporary arrangement for a child to be cared for by adults other than their biological parents. In the United States, there were over 423,000 children in the foster care system in fiscal year 2019 (U.S. Department of Health and Human Services, 2020). Given the high number of children in the foster care system, there is always a need for foster parents. The Villages is one of the licensed and accredited agencies in Indiana that helps to place foster children into homes (The Villages, n.d.). As part of this process, they also must train and complete various checks on individuals who are interested in foster parenting. Across the country, the high burnout rate of foster parents is an issue. A researcher supported by the U.S. Department of Health and Human Services found that the longevity of foster parenting is very short, ranging from only eight to fourteen months across three states studied (Gibbs, 2005). The Villages experience similar difficulties with the foster parents they support as they, along with other agencies across the United States, face low retention levels for foster parents. This low retention level puts a strain on the already minuscule available resources that the agency has. Foster parents consistently note increased training as an area that could be improved upon (Barnett, Jankowski, Butcher, Meister, Parton, & Drake, 2017; Cooley & Petren, 2011; Esaki, Ahn, & Gregory, 2012; Hebert & Kulkin, 2018). To combat the issue, my doctoral capstone experience (DCE) involved providing additional training opportunities to foster parents that The Villages of Indiana serves to improve outcomes for both the foster families and children. Guiding Theory and Model The occupation-based model that will drive my DCE from day to day is the personenvironment-occupation (PEO) model. This model focuses on the interaction of the person, environment, and occupation, while ultimately attempting to maximize the fit of these pieces EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 4 (Cole & Tufano, 2008). When considering participation in any occupation, it is important to recognize that participation may be impaired if balance is not present. In the case of my DCE, considering all of the other pieces in the lives of foster parents will be important as the individuals may not be able to adequately care for foster children when they experience changes in their environment or occupations. Therefore, it is important to consider how the foster parents themselves are doing and also the environment they are parenting in as compared to only focusing on their occupation as a caregiver. Along with this, the PEO model will serve as a reminder that the occupation of foster caring may not be a good fit at all times. The PEO model is also helpful as it views motivation as being intrinsic. While theoretically anyone could act as a foster caregiver, this model will be a reminder that if people dont have a passion for the occupation, they may not stick with the occupation for long. The theory that will drive my overall doctoral capstone experience is the psychodynamic frame of reference. This theory acknowledges peoples emotions, which may be a big component of why people decide to begin acting as foster parents, as well as why they continue to act as foster parents (Cole & Tufano, 2008). This theory will serve as a reminder to keep peoples emotions at the forefront, which will be crucial as the carers emotional status could either positively or negatively affect their retention rate as a foster parent. The psychodynamic theory is also helpful as it recognizes that motivation may increase when individuals have experienced success (Cole & Tufano, 2008). Consideration of experience is important because if the parents had poor experiences in the past, their probability of continuing as a foster parent might decrease. Likewise, foster parents who had successful placements may continue to accept future child placement. EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 5 Literature Review Factors Negatively Impacting Foster Parent Retention A number of researchers have conducted studies to help determine why foster parents decide to leave their role of foster carer. Work by a number of authors suggest that foster parents would benefit from more resources when caring for foster children (Cooley & Petren, 2011; Daniel, 2011; Geiger, Hayes, & Leitz, 2013; Vanderfaeillie, Van Holen, De Maeyer, Gypen, & Belenger, 2016). The need for further resources includes practical and tangible resources, as well as emotional and caseworker support. Regarding training, foster parents suggested that information that was physically available after initial training would be helpful (Cooley & Petren, 2011). The same participants indicated that interacting with current and former foster parents would be beneficial to help them learn, and they also suggested going through real-life scenarios as part of training (Cooley & Petren, 2011). Additionally, many foster parents indicated practical supports such as respite services, as well as increased compensation to help meet the needs of the foster children in their care, would be appreciated (Daniel, 2011; Geiger, Hayes, & Lietz, 2013; Vanderfaeillie et al., 2016). While foster parents expressed a desire for greater compensation for the services they were providing, they indicated that money was not the reason that they fostered (Geiger, Hayes, & Leitz, 2013). Instead, families suggested that money was a component that would have to be weighed regarding their ability to continue fostering should reimbursement rates continue to be cut, given that a number of families already spent lots of money out of pocket (Geiger, Hayes, & Leitz, 2013; Vanderfaeillie et al., 2016). Many authors have uncovered that foster parents are directly impacted by the amount of agency support they receive, whether for better or worse. Randle, Miller, & Dolnicar EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 6 (2018) found that the level of agency support that foster families receive can lead to increased levels of satisfaction with the foster care experience. Regarding levels of support, some foster parents suggest that poor communication with Child Protective Services is one of their biggest areas of concern related to fostering (Geiger, Hayes, & Lietz, 2013). Specifically, foster parents indicated their desire for timely communication, more open and up-front communication about the children in their care, and their desire to be considered experts about the children they care for (Daniel, 2011; Geiger, Hayes, & Lietz, 2013). Vanderfaeillie et al. (2016) discovered that both foster mothers and foster parents indicated needing more help with communicating with the foster childrens biological families, as compared to needing help with dealing with problematic behaviors of the foster child. Other factors that negatively impact the foster care experience are difficulty with navigating the child welfare system, dealing with difficult emotions and behaviors of foster children, lack of emotional and social support, and lack of information about the children being cared for, among others (Daniel, 2011; Geiger, Hayes, & Lietz, 2013; Leitz, Julien-Chinn, Geiger, & Piel, 2016). For example, some foster parents feel that their foster childrens caseworkers are overworked, making it hard for the caseworker to get the foster parent everything they need, which ends up negatively impacting the foster child (Geiger, Hayes, & Lietz, 2013). Although not explicitly described as factors that may cause an exit from the role of foster parent, a study by Daniel (2011) identified that foster parents should be prepared to deal with unexpected events and should also be prepared to lose a piece of themselves each time a foster child left their care. Both of these pieces may be perceived as potentially negative aspects of foster care that could cause an individual to discontinue their foster parent role. EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 7 Factors Positively Impacting Foster Parent Retention Although there are a variety of reasons for foster parents to discontinue in this role, there are also several positive factors that motivate foster parents to push forward. Geiger, Hayes, & Lietz (2013) found that high levels of satisfaction experienced by foster parents related to lower odds of reported intention to discontinue their time as a foster parent. Many foster parents indicated that foster care provided them with an internal source of motivation through knowing that they were helping children grow and through experiencing the love of the children they were fostering (Daniel, 2011; Geiger, Hayes, & Lietz, 2013). Many foster parents also feel a sense of responsibility to provide for children in need in their communities, which is fulfilled in part through their work fostering children and acts as a positive factor (Daniel, 2011; Geiger, Hayes, & Lietz, 2013). Empathy was another factor that was identified as being essential for successful foster parenting in relation to the resilience needed for the foster care experience (Geiger, Piel, Lietz, & Julien-Chinn, 2016). Foster parents described utilizing empathy in many realms, including with the foster child, with caseworkers involved in the foster childs case, and with the biological parents of the foster children (Geiger et al., 2016). A greater understanding of the foster childs past was also possible because of empathy. This understanding helped the foster parents to consider why children may think or act in less than desired ways, which in turn allowed the foster parents to adapt their parenting approaches (Geiger et al., 2016). When working with child welfare workers and biological parents, foster parents drew on empathy to consider that the workers are generally stretched too thinly and biological parents are also humans who make mistakes, respectively (Geiger et al., 2016). The foster parents indicated that empathy helped them to combat stress that they experienced as part of their role as a foster parent, and empathy EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 8 also gave them a more productive way to handle challenging circumstances (Geiger et al., 2016). Participants in this study also identified the importance of setting emotional boundaries when acting as a foster parent, as well as mentioned the importance of compassion (Geiger et al., 2016). Factors Impacting Foster Parent Retention Both Positively and Negatively When thinking about retention rates of foster parents, another component that should be considered is the training that is utilized. Many foster parents feel as if they do not receive enough training or that they desire more specific training (Cooley & Petren, 2011). Therefore, it is important to look into a number of programs that are in place that may be utilized as a part of the training and education required for foster parents. One such program is Parent-Child Interaction Therapy (PCIT). This training is specifically designed for children ages two through seven who have behavior problems (Mersky, Topitzes, Janczewski, & McNeil, 2015). PCIT is led by a therapist who helps parents to increase their parenting skills (Mersky et al., 2015). This form of therapy has been found to eliminate parenting stress experienced by foster carers (Mersky et al., 2015). Another training is the KEEP training, which is designed to decrease child behaviors, as well as to increase the stability of the foster care placement (Greeno, Lee, Uretsky, Moore, Barth, & Shaw, 2016). Greeno et al., (2016) found that after the KEEP intervention, caregivers reported fewer child behaviors. However, parental stress of caregivers did not decrease following the intervention (Greeno et al., 2016). More generally, Randle, Miller, & Dolnicar (2018) found that training that was related to practical issues and training that gave realistic expectations of what it is like to act as a foster parent were correlated with increased ratings of agency support. EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 9 When considering the foster care system, there is no doubt that there is a shortage of foster parents given the sheer numbers of children in the foster care system. Despite this shortage, it is important to consider that not all individuals are appropriate to act as foster caregivers. Combs-Orme and Orme (2014) conducted a study that involved looking at family context. These authors found that families identified as having a nonproblematic family context were significantly more likely to be approved to foster as compared to families identified as having a problematic family context (Combs-Orme & Orme, 2014). Looking at family functioning is valuable given that increased family stress was one reason foster parents cited as increasing their likelihood to leave fostering (Geiger, Hayes, & Lietz, 2013). Interestingly, preservice training for foster parents in one region of Belgium pays specific attention to the impact of fostering on family functioning (Vanderfaeillie et al., 2016). Therefore, it may be in the interest of the foster agency to consider the potential foster familys functioning as those who are already experiencing a problematic family context may be more likely to discontinue their role as foster parent. Methods This project utilized survey methodology to anonymously obtain foster parents perceptions of their training before and after becoming licensed foster parents. The survey also asked for other topics the parents would like to receive more information about as part of future pieces of training. A total of thirty-nine families serving as foster parents with a non-profit agency in the Midwest were invited to participate in the survey. Participants were selected based on their previous or current willingness to, or interest in, foster older youth. For this study, older youth are defined as those being nine years old and above. The survey was distributed via Google forms, with all answers being submitted anonymously. Participation was voluntary, and EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 10 the participants were informed that their relationship with the non-profit agency would not be hindered if they chose not to participate. A reminder email was sent ten days after the original survey was launched. Given the low response rate, cold calls were made to select foster families to obtain their opinions. Additionally, emails and interviews to internal staff within the nonprofit agency who are very familiar with the topic and/or who have previously or currently served as foster parents were elicited to obtain further information. Results The survey yielded a total of nine responses. When asked about the training they received both before and after becoming a licensed foster parent, 88.9% of participants agreed or strongly agreed that the training was helpful to them. Similarly, 88.9% of respondents agreed or strongly agreed that the training they received, in general, helped them to care for the foster children in their home adequately. When asked about feeling confident in their ability to meet the needs of the children in their care, all nine participants agreed or strongly agreed. Foster parents were also asked about the information they were given regarding community resources in place to help with the foster children in their care. Seven of the nine respondents, totaling 77.8%, agreed or strongly agreed that the information provided was adequate while two participants disagreed. The survey also inquired about specific pieces of training utilized before foster parents became licensed. Of the seven pieces of training listed, five of them each had one vote for not being useful. Finally, foster parents were also asked to indicate topics that they would like to see in future trainings that are not currently offered. Answers included: infant and toddler development, sibling separation, transition into home information, and more trainings on adoption. Cold calls to foster parents were also performed to help elicit responses regarding additional training needs. Fifteen families were called, with six individuals answering the phone EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 11 and nine calls resulting in voicemail messages. No voicemail messages were returned. One suggestion from the cold calls for additional needs included having activities available to facilitate interaction between foster youth, including youth their age and adults who had previously been part of the foster care system. Another participant suggested having more programs available to teach kids about their finances. Based on research conducted, these responses, and the scope of the project, three presentations about various topics were compiled. The topics of the presentations included resilience, healthy boundaries, and a general presentation with information primarily focused on occupational therapy and community resources. Information about the presentations was sent to each of the foster families who were invited to participate in the survey about their training experience. Reminder emails were sent on the afternoon before each of the three presentations. One couple, one couple and one individual, and one couple attended the presentations, respectively. All presentations were held virtually. All three trainings included educational components through formal presentation, and discussion points at the end of the presentation to engage the parents. Additionally, questions throughout the presentation were allowed and encouraged and resources including handouts and website links were provided. Given the low turnout of the foster parents for the training sessions, an additional presentation was given to staff at the organization to collect a larger number of responses about the information provided. Those who took part in the session consisted of case managers and supervisors in the foster care sector of the agency. This session consisted of an expedited presentation of three individual trainings. Additional information about occupational therapy and sensory processing was added to the staff presentation based on a previous interaction detailed by staff about potential sensory concerns with foster children they oversaw. EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 12 Following the presentation, the staff was asked to answer a two-question survey about the presentation. These questions included asking what could be changed to make the presentation better for the foster parents and what additional topics that were not covered in the presentation would benefit the foster parents. A total of nine responses were collected, with only eight participants answering the second question. The results of this questionnaire indicated that the material presented to the staff was informative. Five of the nine responses indicated variations of the presentation being informative or having good information. Respondents indicated appreciating examples provided in the presentation. Staff also indicated believing that the information presented was beneficial to the foster parents whom the information was initially intended for. A few respondents indicated wishing there was more time for the presentation to have obtained all the information and resources given to the foster parents. Another participant indicated desiring more interaction as part of the presentation as all discussion questions were omitted from this presentation for time purposes. The second question in the survey asked participants to suggest topics that were not covered as part of the presentation that would benefit the foster parents they help oversee. Two participants answered that important topics were covered, and they did not have additional suggestions at that time. The remainder of the participants suggested topics such as: Attentiondeficit/hyperactivity disorder versus trauma, more in-depth strategies for dealing with behaviors, trauma and behaviors / fostering older youth, more tangible techniques on setting clear boundaries, different parenting styles and understanding the style that the parents use, and more resources. To help combat the need for physical information available after initial training, as identified by Cooley and Petren (2011), work has begun to create a website for The Villages EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 13 foster parents. Building of the website is still in the works, but when completed it will feature a private connection that the foster parents can bookmark. Information on the website will include pieces of the training provided as part of the DCE. Additionally, it will include information about community resources and links to helpful resources, such as podcasts, books, articles, and blogs, for a variety of topics. Some of these topics, identified in part by both agency staff and foster parents, include adoption, child behaviors, and trauma informed care, among others. Discussion Retention rates of foster parents have been found to be an issue. However, this study included foster parents on the opposite end of that spectrum. One couple who attended multiple of the provided training sessions have been fostering children for over twenty years. Multiple other families who are licensed through this agency have been serving for over five years. This demonstrates that although some foster parents choose this role for a short period of time, others find ways to adapt and thrive in their roles as foster parents. Another point that should be considered with foster care and retention rates is that some families who choose to foster to adopt, may not have the capability to continue to foster other children after adopting and instead, were always planning on fostering for a short period of time. Authors from previous studies found that many foster parents feel as if they do not receive enough training or that they desire more specific training (Cooley & Petren, 2011). Evidence from this study indicates that although additional training may be desired, foster parents may not be able to self-identify what types of training would be most beneficial. The topics to present to foster parents were ultimately decided upon by this researcher based on the target population of the agency: those who currently, previously, or have a desire to foster older youth, and on previous research. One such study, was that by Geiger, Piel, Lietz, & Julien-Chinn EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 14 (2016) who found that resilience, emotional boundaries, and understanding the youths past each positively impacted foster parent retention. Two of these topics, including resilience and healthy boundaries, were presented upon as part of the DCE. Another presentation with general tips, tricks, and resources was also provided. As part of the healthy boundaries session, each of the families who attended were able to indicate boundaries they had already set in their lives. This aligns with the findings of Geiger et al. (2016) who identified the importance of foster parents setting emotional boundaries. Participants were also able to demonstrate knowledge of the importance of resilience and ways to foster resilience as part of the resilience session. Another issue is that although parents may desire to receive additional training, they may not have enough time available to take part in the training sessions. It should be considered that previously, the agency associated with this study provided childcare for foster parents while attending select trainings. Unfortunately, this option was removed secondary to the Covid-19 pandemic and safety reasons necessitating virtual trainings. Therefore, it is possible that other foster parents may have benefited from the trainings that were offered but were unable to attend due to childcare needs. Along with the need for more training, foster parents in previous studies identified the need for more resources (Cooley & Petren, 2011; Daniel, 2011; Geiger, Hayes, & Leitz, 2013; Vanderfaeillie, Van Holen, De Maeyer, Gypen, & Belenger, 2016). Cooley and Petren (2011) found that physically available information after trainings would be beneficial. Additional resources to explore related to each of the presentation topics were gathered for foster parents to utilize on their own time. Foster parents surveyed in the study by Cooley and Petren (2011) also indicated that having real life scenarios would be helpful as part of training. Therefore, each of the presentations included examples of how and/or why the information was important and EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 15 necessary to the success of the foster parents. As part of the resources that were provided, information about programs in local communities supporting foster families was provided. This information included attractions with free and reduced-price admission, as well as information about where to obtain necessary items such as clothing for the youth in foster care. Additionally, options for accessing training materials, as well as materials not covered by formal trainings but useful for foster families, is currently in the works to help meet the needs of foster parents. Low participation levels limited the applicability of the findings, though time available to foster parents to participate in these trainings should be considered. Future studies may build off this project by widening the target audience to include training for all foster parents, instead of basing criteria on age of children supported. Additional studies may also benefit from working with multiple foster care agencies in order to reach more foster parents. Finally, future studies could build on this project by surveying foster parents who have continued to foster for a number of years to help conclude why they have stayed and to help facilitate these helpful factors in other foster parents. As can be seen, there are a number of factors that must be considered when thinking about the retention rates of foster parents. For foster parents to continue acting in this role, increased resources, including emotional support and increased training, may be needed to increase retention rates of foster parents by helping them to feel equipped in their foster parent role. Access to resources, including both training materials and available supports in the community, should also be provided. EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 16 References Barnett, E. R., Jankowski, M. K., Butcher, R. L., Meister, C., Parton, R. R., & Drake, R. E. (2017). Foster and adoptive parent perspectives on needs and services: A mixed methods study. Journal of Behavioral Health Services & Research, 45(1), 74-89. doi: 10.1007/s11414-017-9569-4 Cole, M.B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK, Inc. Combs-Orme, T., & Orme, J. G. (2014). Foster parenting together: Assessing foster parent applicant couples. Children and Youth Services Review, 36, 70-80. doi: 10.1016/j.childyouth.2013.10.017 Cooley, M. E., & Petren, R. E. (2011). Foster parent perceptions of competency: Implications for foster parent training. Children and Youth Services Review, 33(10), 1968-1974. doi: 10.1016/j.childyouth.2011.05.023 Daniel, E. (2011). Gentle iron will: Foster parents perspectives. Children and Youth Services Review, 33, 910-917. doi: 10.1016/j.childyouth.2010.12.009 Esaki, N., Ahn, H., & Gregory, G. (2012). Factors associated with foster parents perceptions of agency effectiveness in preparing them for their role. Journal of Public Child Welfare, 6, 678-695. doi: 10.1080/ 15548732.2012.723978 Geiger, J. M., Hayes, M., J., & Lietz, C. A. (2013). Should I stay or should I go? A mixed methods study examining the factors influencing foster parents decisions to continue or EXPLORING FACTORS RELATED TO FOSTER PARENT RETENTION 17 discontinue providing foster care. Children and Youth Services Review, 35, 1356-1365. doi: 10.1016/j.childyouth.2013.05.003 Geiger, J. M., Piel, M. H., Lietz, C. A., & Julien-Chinn, F. J. (2016). Empathy as an essential foundation to successful foster parenting. Journal of Child Family Studies, 25, 37713779. doi: 10.1007/s10826-016-0529-z Gibbs, D.A. (2005). Understanding foster parenting: Using administrative data to explore retention. Report prepared by RTI International for U.S. Department of Health and Human Services; Office of the Assistant Secretary for Planning and Evaluation. Washington, DC: U.S. Department of Health and Human Services. Greeno, E. J., Lee, B. R., Uretsky, M. C., Moore, J. E., Barth, R. P., & Shaw, T. V. (2016). 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What can agencies do to increase foster carer satisfaction? Child & Family Social Work, 23, 212-221. doi: 10.1111/cfs.12402 The Villages (n.d.). Foster Parent FAQs. Retrieved from https://www.villageskids.org/foster-achild/foster-parent-faqs/ U.S. Department of Health and Human Services, Administration for Children and Families, Administration on Children, Youth and Families, Children's Bureau. (2020). The AFCARS report: Preliminary FY 2019 estimates as of June 23, 2020 - No. 27. U.S. Department of Health and Human Services. https://www.acf.hhs.gov/sites/default/files/documents/cb/afcarsreport27.pdf Vanderfaeillie, J., Van Holen, F., De Maeyer, S., Gypen, L., & Belenger, L. (2016). Support needs and satisfaction in foster care: Differences between foster mothers and foster fathers. Journal of Child and Family Studies, 25, 1515-1524. doi: 10.1007/s10826-0150320-6  ...