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... Self-Managing Cancer-Related Fatigue Claire Allen A doctoral capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. SELF-MANAGING CANCER-RELATED FATIGUE 2 Abstract Cancer-related fatigue (CRF) is one of the most commonly reported negative side effects individuals experience from cancer treatments (Patel & Bhise, 2017). The purpose of this doctoral capstone experience was to create and implement a six-week virtual educational series for Cancer Support Community, aimed at self-managing cancer-related fatigue in individuals who have, or had, cancer. A needs assessment conducted indicated that not many individuals were aware of what seated exercises to engage in, what energy saving strategies consist of, or what sleep management tips exist to improve overall fatigue levels. This program consisted of education and discussion sessions surrounding three topics that affect CRF including physical exercise, energy conservation techniques, and sleep management. After the six-week program, program evaluation results indicated reduced fatigue levels and an increase in energy levels during daily activity. A mean score change of 2.64 was identified in participants after education sessions and consistent use of applying energy conservation strategies learned. This selfmanagement program has a vital spot within the cancer community. As an occupational therapists scope of practice includes these three topics, these professionals can utilize their knowledge to help several individuals a part of the cancer community. SELF-MANAGING CANCER-RELATED FATIGUE 3 Self-Managing Cancer-Related Fatigue Background A variety of individuals experience cancer-related fatigue (CRF) throughout their time along the cancer care continuum (Baxter et al., 2017). Different cancer treatments create CRF and can negatively impact an individuals participation in meaningful daily activities (Patel & Bhise, 2017). Individuals experiencing CRF have identified the significance of making modifications to tasks and prioritizing meaningful activities in order to get back into a routine to resume daily activities (Longpr et al., 2020). The Cancer Support Community is a wellestablished organization that provides support groups and other programs to enable individuals to connect with other. A need for a program that educates individuals on how they can self-manage their CRF through utilization of physical exercise, energy conservation techniques, and sleep management was found throughout discussing with individuals diagnosed with cancer and staff within the organization. Within this literature review, information discusses various literature and research that review CRF and overall impacts of a wellness program. Physical Exercise and Fatigue Cancer-related fatigue (CRF) is one of the most commonly reported negative side effects individuals experience from cancer treatments (Patel & Bhise, 2017). It is crucial to understand cancer-related fatigue and how these negative symptoms impact quality of life and how daily lifestyles are altered. A research study conducted an experiment to determine the effects of aerobic exercise on individuals experiencing CRF (Patel & Bhise, 2017). Male and female participants, between the ages of 35 and 70 years, who received chemotherapy and radiation therapy were chosen to participate (Patel & Bhise, 2017). The experimental group received clear instruction regarding aerobic exercise for the duration of a six-week program, exercising for 20- SELF-MANAGING CANCER-RELATED FATIGUE 4 40 minutes per day for five days each week (Patel & Bhise, 2017). The control group performed lower extremity stretches with some instruction, but did not have a specific program to follow (Patel & Bhise, 2017). Outcome measures aimed at identifying fatigue, physical performance, and quality of life before and after the six-week program (Patel & Bhise, 2017). Results indicated a significant decrease in CRF, with a significant increase in quality of life and physical performance (Patel & Bhise, 2017). This is only one study identifying positive effects of physical exercise on CRF and overall quality of life in individuals with cancer. Although aerobic exercise is a key component in relieving fatigue, other researchers conducted a randomized pilot trial and found positive results in individuals participating in both yoga and strengthening exercises (Stan et al., 2016). In a study conducted, researchers aimed to understand whether yoga or strengthening exercises were more beneficial for treating CRF in breast cancer survivors (Stan et al., 2016). Participants were selected through Mayo Clinics medical record system consisting of 34 females between the ages of 20 and 75 years (Stan et al., 2016). The Multidimensional Fatigue Symptom Inventory-Short Form (MFSI-SF) determined levels of fatigue before and after participating in the program (Stan et al., 2016). In addition, the Functional Assessment of Cancer Therapies, Breast (FACT-B) measured quality of life to understand functional well-being in participants (Stan et al., 2016). Half of the participants followed a 12-week home-based yoga series while the other group engaged in strengthening DVD-based exercises (Stan et al., 2016). Results indicated both programs had significant decreased in fatigue and improvement in quality of life (Stan et al., 2016). Participants involved in the yoga series showed significant improvements for CRF in all sub-scores including general fatigue, mental fatigue, vigor, and total score (Stan et al., 2016). Although the strengthening series showed significant improvements in all areas but vigor, no true SELF-MANAGING CANCER-RELATED FATIGUE 5 significant differences appeared between the two programs with values measured at baseline and at the end of the series (Stan et al., 2016). Quality of life significantly improved with both the yoga and strengthening program groups (Stan et al., 2016). From these results, researchers concluded that participating in a yoga series created just as effective results as engaging in a resistive strengthening exercise program to reduce CRF and improve quality of life in individuals who were in their first year post diagnosis with breast cancer and experiencing CRF (Stan et al., 2016). This data is consistent with a similar study conducted with patients hospitalized for blood or lymphatic cancer (Mascaro et al., 2019). Mascaro et al., aimed to understand if physical, emotional, and social symptoms improved quality of life following participation of a yoga program (2019). Over the course of four years, 486 patients engaged in a 40 minute one-on-one guided yoga session either long sitting in bed or seated in a chair (Mascaro et al., 2019). Sessions focused on breathing, posture, stretching, with symptom checking completed before and after each session (Mascaro et al., 2019). Immediate results occurred right after the first completed yoga session (Mascaro et al., 2019). Additionally, participants experienced long-term benefits with significant improvement in quality of life as well as a decrease in all symptoms, with the largest impact on fatigue and anxiety (Mascaro et al., 2019). Fatigue Impacting Energy Levels Besides physical exercise, educating individuals on energy conservation strategies is beneficial in reducing and managing fatigue (Sadeghi et al., 2016). A research study aimed to understand the impact these techniques, as well as health promotion, had on CRF in breast cancer survivors (Sadeghi et al., 2016). This randomized control trial consisted of 135 female participants who were assigned to the experimental and control groups (Sadeghi et al., 2016). SELF-MANAGING CANCER-RELATED FATIGUE 6 The intervention consisted of a five-week series, with 90 minute discussions, in small groups of about eight individuals (Sadeghi et al., 2016). Information included discussing fatigue, energy conservation skills, daily routines and modifications, planning activities throughout the day based on energy levels, as well as monitoring progress through use of newly learned strategies (Sadeghi et al., 2016). Results indicated a significant reduction of CRF in cancer survivors who participated in the experimental group from baseline, after the program, and eight weeks later (Sadeghi et al., 2016). Additionally, Sadeghi and other researchers concluded that healthy lifestyles significantly improved through physical activity, nutrition, stress management, interpersonal relations, spiritual growth, health responsibility, and health-promoting lifestyle following the end of this series (2016). Sleep Deficiency in Cancer Patients Besides developing stronger energy conservation techniques, sleep management is critical in patients with cancer. Sleep deficiency is commonly experienced in cancer survivors and can negatively impact quality of life over time (Lowery-Allison et al., 2018). Researchers examined the severity and prevalence of sleep disturbances in breast cancer survivors who were one to ten years out after finishing treatment (Lowery-Allison et al., 2018). Administration of the Pittsburgh Sleep Quality Index, given to 200 female participants, determined the severity of sleep deficiency they experienced (Lowery-Allison et al., 2018). Results indicated that greater than one-third of the women had very poor quality of sleep, trouble falling and staying asleep, and received about five hours of sleep each night (Lowery-Allison et al., 2018). Additionally, higher pain levels and various personal stressors contributed to a decrease in sleep quality (Lowery-Allison et al., 2018). Findings of individuals with poor sleep quality were consistent with experiencing a decreased quality of life (Lowery-Allison et al., 2018). Researchers SELF-MANAGING CANCER-RELATED FATIGUE 7 concluded that these individuals would benefit from interventions focused on improving sleep habits related to environmental, behavioral, social, and medical factors (Lowery-Allison et al., 2018). Researchers of one study aimed to explore impacts of a Tibetan yoga program (TYP) on sleep and fatigue in breast cancer patients that were receiving treatment (Chaoul et al., 2018). This randomized-controlled trial selected 227 female participants from the University of Texas MD Anderson Cancer Center and arbitrarily placed participants to one of three groups including TYP, stretching program (STP), and usual care (UC) (Chaoul et al., 2018). The TYP and STP consisted of four classes lasting between 75 and 90 minutes, led by instructors in a private session to accommodate for each patients treatment schedule (Chaoul et al., 2018). Additionally, participants were encouraged to engage in exercises at home (Chaoul et al., 2018). Three additional sessions were given over a period of six months following the end of chemotherapy (Chaoul et al., 2018). Fatigue, sleep, and actigraphy were measured before, intermittently, and after the program (Chaoul et al., 2018). Results indicated no significant difference in fatigue of participants; however, actigraphy data concluded longer awake periods after falling asleep in STP participants compared to TYP (Chaoul et al., 2018). Sleep quality significantly improved with long-term benefits in participants who practiced TYP at least twice per week (Chaoul et al., 2018). Overall, cancer impacts each patient in a variety of ways including but not limited to CRF, pain, sleep deficiency, and cognitive difficulties (Baxter et al., 2017). Due to these side effects, participation in meaningful occupations such as activities of daily living, leisure, sleep, work, and much more are negatively impacted (Baxter et al., 2017). Occupational therapists have SELF-MANAGING CANCER-RELATED FATIGUE 8 vast skills and knowledge in more than these mentioned areas, creating a crucial role in working with patients during every part of the cancer care continuum. Conceptual Model The Kawa Model focuses on enriching lifes flow and interactions by enhancing harmony throughout ones lifespan (Cole & Tufano, 2008). Barriers of the Kawa consist of rocks such as decreased physical activity, sleep deficiency, and low energy levels that negatively impact daily life (Cole & Tufano, 2008). Through program development, understanding barriers, making adaptations, adjusting the environment, and learning new skills can make space between rocks to help improve life flow (Cole & Tufano, 2008). Methods Needs Assessment Semi-structured virtual interviews were performed with some participants to assess the need for this program. Questions were asked regarding previously learned information and knowledge regarding physical exercise, energy conservation techniques, and sleep management. Answers obtained revealed participants struggled with low energy, decreased sleep, and increased fatigue negatively impacting participation in meaningful activities. In addition, the lack of information and knowledge in relation to the topics of this program, demonstrate a strong need for an educational series on self-managing cancer-related fatigue. Capstone Plan and Process Plan Goal 1: Participants will be educated on the importance of incorporating physical exercise into their daily routines to help manage their fatigue overall. SELF-MANAGING CANCER-RELATED FATIGUE 9 Objective 1.1: Participants will identify the importance of physical exercise on individuals with cancer. Objective 1.2: Participants will be able to identify what seated exercises to complete when individuals are experiencing differing levels of fatigue. Objective 1.3: Participants will increase their weekly physical exercise. Goal 2: Participants will be informed on how to utilize energy conservation strategies during their daily activities to manage daily fatigue levels. Objective 2.1: Participants will understand what energy conservation techniques are and how they can assist with daily fatigue levels. Objective 2.2: Participants will increase their use of daily energy conservation techniques during meaningful activities to help conserve energy each day. Objective 2.3: Participants will decrease levels of fatigue and increase levels of energy as they participate in daily activities, while using strategies. Goal 3: Participants will understand how to better manage their sleep with use of different adaptations and modifications to their sleep environment and nightly routines. Objective 3.1: Participants will identify how much sleep is needed each night Objective 3.2: Participants will identify 4 strategies to utilize or incorporate into a nightly routine for improved sleep as well as know what to do if you wake up during the middle of the night. Process The first week was spent researching the literature and updating the literature review as necessary. The following week included learning more about the site, orienting to the site, and outlining what will be done over the course of the remaining 12 weeks. From there on out, the SELF-MANAGING CANCER-RELATED FATIGUE 10 remaining weeks consisted of planning, organizing, and implementing a six-week educational series on three topics. Each topic was covered for two weeks within the series. After the program ended, time was spent analyzing data and concluding results. Information gathered from the program and surveys was placed into a formal paper. This included tables and informational sections related to the importance of this program for the cancer community and occupational therapy practice. Upon finishing the formal paper, a presentation was created to present program findings to the Cancer Support Community staff and members, as well as the University of Indianapolis. Project Implementation Participants Individuals from the Cancer Support Community (CSC), with various cancer diagnoses or who were part of the staff, participated in this virtual program through RingCentral Meetings. Ages ranged from 22 to 73 years old within the male and female participants. Various advertisements and different forms of media were employed for distributing the program information to CSC individuals. People who responded to these announcements were included in the program. There were around 15 participants at each session. Program Components Participants engaged in a virtual program consisting of six, one-hour, weekly video conference sessions on self-managing CRF through physical exercise, utilization of energy conservation techniques, and sleep management. Three educational sessions consisted of participants discussing various barriers that negatively impacted engagement in meaningful activities and personal emotions surrounding that sessions specific topic. The leading occupational therapist student intern informed participants of various useful strategies to SELF-MANAGING CANCER-RELATED FATIGUE 11 incorporate into daily routines and the overall importance of each topic. Every other week collaborative discussion groups were held to communicate what each person learned, what barriers were faced, what strategies were tried, what individuals liked or disliked, and what changes could be made in the second week to improve success related to that specific topic. Program Evaluation Formative Assessments Formative assessments consisting of pre and post surveys, regarding each of the three distinct topic areas, were administered to participants throughout the six-week program These five-question surveys were created to further assess success of the program, through analyzing participant knowledge and understanding of utilizing information gained from the six-week series. These 5-question surveys were created in SurveyMonkey, with the link sent through the chat box of our RingCentral Meetings video conference. The pre-survey link would be sent during the beginning of the educational session with each new topic. The post-survey link would be sent about one to two weeks following the educational session. This allowed participants time to implement the information and strategies learned in both the educational and discussion sessions. Once data was analyzed from that specific topics pre-survey, the results were used to guide the educational and discussion sessions. This ensured that our discussions were centered around what the participants had identified as challenges or barriers for each topic area. The first formative assessment discussed physical exercise within participants daily lives. Certain questions asked participants about their weekly exercise, length of exercise, incorporation of exercise into a daily routine, knowledge of physical exercise on fatigue, and understanding what chair exercises can be done when individuals feel fatigued. The second formative assessment questioned participants about their knowledge of utilizing these strategies SELF-MANAGING CANCER-RELATED FATIGUE 12 during their daily activities. In addition, participants answered questions related to energy levels during activity engagement as well as the impact of fatigue and low energy on participating in various tasks. Finally the third topic survey questions covered sleep management. Information from the formative assessments was analyzed throughout the six-week series. Data collected was categorized into two groups: Individuals with cancer and individuals who were a part of the CSC staff. After the first formative assessment was complete, I used those results to help guide the organization of the rest of my program. Summative Assessments Summative assessments were used at the beginning and end of the six-week program to detect change and effectiveness of the series. The Cancer Support Source survey was used as a summative assessment prior to the first session and after the final session of the six-week program. This distress screener identifies areas including fatigue and energy, pain, physical exercise, finances, relationships, etc. to analyze how different stressors delineate a risk for depression and anxiety. This tool was administered to holistically understand daily challenges and whether specific program topics were classified as barriers during participants daily lives. Direct website links were emailed, individually, to each participant to take this survey. To assess fatigue levels, the Brief Fatigue Inventory outcome measure was utilized during the initial and final sessions of the series. This nine-item tool identifies current, usual, and worst levels of fatigue, as well as how fatigue interferes with daily life in cancer patients (Patel & Bhise, 2017). A numeric rating scale, zero to ten, is used with zero indicating no fatigue or no interference with daily life and ten indicating bad fatigue or completely interferes with daily life (Patel & Bhise, 2017). This assessment was transcribed into a SurveyMonkey format through the SELF-MANAGING CANCER-RELATED FATIGUE 13 computer, due to the virtual setting of the program. The link was sent out during the meeting sessions. Results Due to the nature of the survey questions being online using SurveyMonkey, and each question not being mandatory, various participants often skipped a question(s) on each survey. Therefore, analysis and overall results depicted in tables of the Appendices includes each question analyzed with all data from those that answered. Formative Assessments Physical Exercise Results for physical exercise are further delineated in Table 1 of Appendix A. After learning about the importance of consistent physical exercise, there was a 1.38 mean score change of participants increasing their weekly exercise. Additionally, duration of exercise changed by a mean score of 1.08. Over the course of two weeks fatigue level improved with a mean score of 1.85. There was a 61.5% increase in individuals knowing what seated exercises to engage in to help with fatigue when compared pre and post survey results. There was a 46.1% increase with participants finding a routine and schedule to incorporate exercise into their routine. During the course of the exercise intervention, qualitative feedback from participants included an interest in seated exercise, Participants would discuss their home lifestyles, working situations, feeling too fatigued to go for a walk, and other factors that created barriers to exercising. Individuals expressed their liking of chair yoga and chair aerobics as it was a start to incorporating exercise into their daily routines. SELF-MANAGING CANCER-RELATED FATIGUE 14 Energy Conservation Techniques Results from the energy conservation techniques portion of the program are further outlined in Table 2 of Appendix A. After this topic was covered, a 100% increase was shown in individuals knowing how to manage their fatigue through use of energy conservation strategies. There was a mean score change of two in relation to the amount of techniques participants were utilizing during daily activities. Additionally, there was a 63.6% increase with participants knowing how to modify or adapt activities based on energy and fatigue levels. After utilization of energy conservation techniques for two weeks, there was a 1.18 mean score change with relation to energy levels impacting ability to engage in daily activities. Energy levels during participation of daily tasks changed by a mean score of 2.64 after incorporating strategies into the process of completing activities. This topic showed the most positive results and change compared to the other two topics. Most participants had not heard of energy conservation techniques prior to this program series. During program implementation of this topic, qualitative feedback included participants expressing their gratitude for the education and discussion sessions, as well as the handouts related to this topic through email and during our video sessions. Furthermore, participants indicated this was their favorite topic out of the three, as well as the one where each participant benefited the most in learning ways to help combat low energy levels and decreased fatigue during daily activities. Sleep Management Results for sleep management can be found in Table 3 of Appendix A. After incorporating some sleep management techniques, there was an 11.1% decrease with regards to difficulty falling sleep. There was an overall decrease in the amount of times participants woke SELF-MANAGING CANCER-RELATED FATIGUE 15 up during the night with a mean score change of 0.66. Upon discussing the importance of obtaining enough sleep each night and different strategies to trial, there was a mean score change of 0.11. Additionally, there was a 12.5% increase in which all participants reported they understood how to improve their environment to promote positive sleep hygiene. By the end of this topic, there was a mean score change of 0.44 with an increase of participants utilizing more sleep management techniques to improve sleep quality. Through implementation of this topic during the educational series, qualitative feedback included this section was more of a refresher educational topic, as many participants had already been introduced to some of this information. However, participants vocalized that they had not truly made any modifications or changes to their nightly routines or sleeping environments. After utilizing these learned strategies, individuals mentioned they experienced an increase in sleep quality and a decrease in the amount of times they woke up during the night. Individuals attributed this progress to the handout that included various pieces of information for individuals to alter their current nightly routine. Summative Assessments Cancer Support Source Survey Results for the Cancer Support Source Survey can be found in Table 1 of Appendix B. Overall, there was an increase in each category of this distress screener. The key concerns related to this program series included: Changes or disruptions in daily life, pain and physical discomfort, feeling too tired to engage in meaningful activities, exercising and being active, and thinking clearly. Results from the concern regarding changes in daily life indicated a mean score change of 0.27. Pain and physical discomfort decreased with a mean score change of 0.45. The greatest mean score change involved the concern of participants feeling too tired to engage in SELF-MANAGING CANCER-RELATED FATIGUE 16 meaningful activities. Results from this concern indicated a mean score change of 0.82. Reports related to exercising and being physically active revealed a mean score change of 0.36. Finally, participant reports of concerns with thinking clearly resulted in a mean score change of 0.37. Throughout the program series participants noted their understanding and progress in physical exercise, utilization of energy conservation techniques, and sleep management with noticeable positive progress in other aspects of their daily lifestyles. Brief Fatigue Inventory Results for the Brief Fatigue Inventory outcome measure can be found in Table 2 of Appendix B. When asked about feeling unusually tired or fatigued within the last week, several participants skipped this question. Due to this, a true mean score change was unable to be found. Current fatigue levels improved with a mean score change of 1.45. Participant reports of usual level of fatigue during the past 24 hours changed with a mean score change of 1.88. Worst level of fatigue appeared to have changed slightly with a mean score change of 0.55. Fatigue interfering with general activity largely decreased with a mean score change of 1.56. Fatigue meddling with mood had improved with a mean score change of 2.67. Walking ability with fatigue interference had a mean score change of 1.89. After the six-week series, normal work was interfered by fatigue less with a mean score change of 2.45. Additionally, there was a mean score change with fatigue not interfering as much with relations with other people at the end of the program. Finally, participants reported they did not experience as much obstruction with fatigue on their enjoyment of life. Results in this area indicated a mean score change of 2.22. Discussion As data was gathered from formative and summative assessments, results showed an overall positive effect in each focus area. Mean data of the goals and objectives, between each SELF-MANAGING CANCER-RELATED FATIGUE 17 educational topic, conveyed overall improvement in all areas within the group of participating individuals. With regards to physical exercise, a goal was set for participants to understand how to incorporate physical exercise into their daily routines. By the end of this unit, participants vocalized and understood the value of the positive impact of exercise on CRF and overall health. With the appropriate education and discussion sessions, as well as exercise handouts, participants were able to incorporate exercise into their daily routines. This was the key take away, as finding a time to exercise within daily schedules is the first step in creating a positive routine that works for each individual. As individuals expressed their ability to schedule a time, they reported the ease of engaging in exercise during that time. Results convey the increase in physical exercise after three weeks with this specific topic unit. Due to this topic being our first meeting, I would try to shorten the time we spent introducing one another. Changes for the future could include holding a first welcome session for individuals to meet each other, then begin this topic at the following meeting. This way, the second session would focus solely on the topic area and not create a challenge with splitting time between introductions and the educational topic. Despite all of the progress with the physical exercise topic, the energy conservation techniques unit was the most beneficial topic of the educational series. Initially, 100% (11 individuals) reported they were not aware of how to manage fatigue with use of energy conservation strategies. As the educational session encompassed what, how, why, when, and where these techniques come to be beneficial, participants began to incorporate these strategies into daily activities they were completing. By the end of this focus area, participants had met each objective within this subject. The amount of energy conservation strategies utilized largely increased. Participants conveyed specific, individual changes and modifications made within SELF-MANAGING CANCER-RELATED FATIGUE 18 each activity to incorporate new strategies for conserving energy. Due to consistency with these strategies, energy levels increased overall while engaging in daily activities. As the greatest mean score change involved the concern of participants feeling too tired to engage in meaningful activities, there was also a decrease of interference with daily activities due to low energy. Participants improved involvement of daily activities with positive reports of energy levels. I would not change anything in relation to this section of the program. Everyone participated and the material had a nice flow to create a smooth time covering this topic area. Finally, participants made positive changes to their sleeping environment and nightly routines to increase sleep quality. Initially, individuals expressed some prior knowledge of the sleep management topic during our series. However, they also communicated the lack of changes, modifications, and adaptations actually made to their nightly routine. Therefore, after both educational and discussion sessions were finished, individuals began employing changes and increased consistency with their nightly routines. Results indicated positive improvement in sleep quality, quantity, and overall sleep environment. For the future, there are no specific adjustments or changes needed for this portion, as the meetings covered each questioned area within sleep management. In addition to the formative assessments data, analysis of the summative assessments data also depicts the need for this program series. After participating in the six-week series, participants took the Caner Support Distress Screener and Brief Fatigue Inventory yet again. Comparisons from pre and post results indicated positive change within each category of each assessment. Participants experienced less discomfort, decreased disruptions in daily life, and less interference of fatigue with daily activities. Not only did data show participant-related SELF-MANAGING CANCER-RELATED FATIGUE 19 improvement in the three focus areas, but also with overall daily lifestyles and various encounters throughout ones day-to-day activities. Limitations Due to this doctoral capstone project coinciding with the COVID-19 pandemic, there were various limitations. As CSC closed in-person meetings, this six-week series was held using a virtual platform. Barriers arose as technological challenges appeared, including confusion for use of SurveyMonkey with the older participants. This confusion led to quick scrolling and skipping of some survey questions by participants. Another limitation included inconsistent attendance by most of the participants. Some individuals forgot to log on to our meetings and some had other commitments. Implications for Practice Results, data analysis, and feedback from this program solidify the importance of this sixweek program series assisting cancer survivors in better self-managing CRF. Occupational therapists have a role in improving independence and quality of life within individuals of the oncology population. As all three topics included in the program series are within the scope of practice, this educational series needs to be implemented by occupational therapists. Cancer survivors would benefit from a six-week series to increase overall energy levels, improve CRF, physical and mental health, as well as quality of life. It is recommended that this site, as well as various CSC locations across the nation, adopt a program such as this one. Utilizing this series two to three times each year would allow for significant benefits. New and returning participants would benefit from this program to stay up to date on new techniques related to these topics, get a refresher of information, and a chance to talk to others about strategies they utilize for each of the three topics. SELF-MANAGING CANCER-RELATED FATIGUE 20 Conclusion Through communication with staff and cancer survivors, as well as conducting a needs assessment, an educational series was developed and implemented to assist cancer survivors to better self-manage their CRF. Based on gathered quantitative and qualitative data, this six-week series proved to be beneficial for cancer survivors at CSC. These results suggest that this program be implemented in various organizations within the oncology population to better serve these individuals. For future program implementation, changes to educational material may be necessary depending on the group of participants with the needs assessment and specific questions related to focus areas. SELF-MANAGING CANCER-RELATED FATIGUE 21 References Baxter, M. F., Newman, R., Longpr, S.,M., & Polo, K. M. (2017). Occupational therapy's role in cancer survivorship as a chronic condition. The American Journal of Occupational Therapy, 71(3), 1-7. https://doi.org/10.5014/ajot.2017.713001 Chaoul, A., Milbury, K., Spelman, A., BasenEngquist, K., Hall, M. H., Wei, Q., ... & Cohen, L. (2018). Randomized trial of Tibetan yoga in patients with breast cancer undergoing chemotherapy. Cancer, 124(1), 36-45. https://doi.org/10.1002/cncr.30938 Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Longpr, S. M., Polo, K. M., & Baxter, M. F. (2020). A personal perspective on daily occupations to counteract cancer related fatigue: A case study. The Open Journal of Occupational Therapy, 8(1), 1-10. https://doi.org/10.15453/2168-6408.1607 Lowery-Allison, A., Passik, S. D., Cribbet, M. R., Reinsel, R. A., O'Sullivan, B., Norton, L., Kirsh, K. L., & Kavey, N. B. (2018). Sleep problems in breast cancer survivors 1-10 years posttreatment. Palliative & Supportive Care, 16(3), 325-334. https://dx.doi.org/10.1017/S1478951517000311 Mascaro, J. S., Waller, A. V., Wright, L., Leonard, T., Haack, C., & Waller, E. K. (2019). Individualized, single session yoga therapy to reduce physical and emotional symptoms in hospitalized hematological cancer patients. Integrative cancer therapies, 18, https://doi.org/10.1177/1534735419861692 Patel, J. G., & Bhise, A. R. (2017). Effect of aerobic exercise on cancer-related fatigue. Indian journal of palliative care, 23(4), 355. https://doi.org/10.4103/IJPC.IJPC_65_17 Sadeghi, E., Gozali, N., & Moghaddam Tabrizi, F. (2016). Effects of energy conservation SELF-MANAGING CANCER-RELATED FATIGUE 22 strategies on cancer related fatigue and health promotion lifestyle in breast cancer survivors: A randomized control trial. Asian Pacific journal of cancer prevention : APJCP, 17(10), 47834790. https://doi.org/10.22034/apjcp.2016.17.10.4783 Stan, D. L., Croghan, K. A., Croghan, I. T., Jenkins, S. M., Sutherland, S. J., Cheville, A. L., & Pruthi, S. (2016). Randomized pilot trial of yoga versus strengthening exercises in breast cancer survivors with cancer-related fatigue. Supportive Care in Cancer, 24(9), 40054015. https://doi.org/10.1007/s00520-016-3233-z The Brief Fatigue Inventory. 1997. The University of Texas M. D. Anderson Cancer Center https://www.sralab.org/sites/default/files/2017-07/brief_fatigue_inventory.pdf SELF-MANAGING CANCER-RELATED FATIGUE Table 1 23 Appendix A Physical Exercise Questions How many days a week do you currently exercise? How long do your workout sessions usually last? What is your current weekly fatigue level? (0 = no fatigue , 10 = severely fatigued) Pre-Survey Results Post-Survey Results 0 (days per week) : 6 individuals 1: 1 individual 2: 3 individuals 3: 0 individuals 4: 1 individual 5: 1 individual 6-7: 1 individual 5-10 (minutes): 5 individuals 10-15: 2 individuals 15-20: 2 individuals 20-25: 1 individual 25-30: 0 individuals 30-35: 0 individuals 40 minutes or longer: 1 individual 0: 0 individuals 1: 1 individual 2: 0 individuals 3: 0 individuals 4: 3 individuals 5: 2 individuals 6: 1 individual 7: 3 individuals 8: 1 individual 9: 1 individual 10: 1 individual Yes: 15.4% (2 individuals) 0 (days per week): 0 individuals 1: 3 individuals 2: 2 individuals 3: 3 individuals 4: 2 individuals 5: 2 individuals 6-7: 1 individual 5-10 (minutes): 4 individuals 10-15: 2 individuals 15-20: 3 individuals 20-25: 1 individual 25-30: 1 individual 30-35: 0 individuals 40 minutes or longer: 2 individuals 0: 0 individuals 1: 1 individual 2: 0 individuals 3: 2 individuals 4: 3 individuals 5: 4 individuals 6: 1 individual 7: 3 individuals 8: 2 individuals 9: 0 individuals 10: 0 individuals Yes: 76.9% (10 individuals) Mean Score Change/Percentage Increase 1.38 1.08 1.85 Do you know what seated exercises you can be completing to 61.5% increase help with your No: 84.6% (11 No: 23.1% (3 fatigue? individuals) individuals) Have you found a routine and schedule Yes: 30.8% (4 Yes: 76.9% (10 to where you find individuals) individuals) time to exercise 46.1% increase according to what No: 69.2% (9 No: 23.1% (3 works best for you? individuals) individuals) *Not all individuals answered each question. Results reflect only includes those that answered. SELF-MANAGING CANCER-RELATED FATIGUE 24 Table 2 Energy Conservation Techniques Questions Do you know how to manage fatigue through use of energy conservation strategies? How many energy conservation techniques are you currently using to combat fatigue on a daily basis? Do you know how to modify or adapt activities based on your energy and fatigue levels? Please rate how low energy levels have impacted your ability to engage in meaningful activities. (0 = no impact, 10 = severely impacted engagement in daily activities) Pre-Survey Results Post-Survey Results Yes: 0% (0 individuals) Yes: 100% (11 individuals) No: 100% (11 individuals) 0 (strategies): 5 individuals 1: 5 individuals 2: 1 individual 3: 0 individuals 4: 0 individuals 5 or more strategies: 0 individuals Yes: 36.4% (4 individuals) No: 0% (0 individuals) 0 (strategies): 0 individuals 1: 1 individual 2: 5 individuals 3: 3 individuals 4: 1 individual 5 or more strategies: 1 individual Yes: 100% (11 individuals) Mean Score Change/ Percentage Increase 100% increase 2 63.6% increase No: 63.6% (7 No: 0% (0 individuals) individuals) 0: 1 individual 0: 0 individuals 1: 0 individuals 1: 2 individuals 2: 0 individuals 2: 0 individuals 3: 0 individuals 3: 0 individuals 4: 0 individuals 4: 0 individuals 5: 4 individuals 5: 5 individuals 1.18 6: 1 individuals 6: 2 individuals 7: 1 individuals 7: 0 individuals 8: 3 individuals 8: 2 individuals 9: 1 individual 9: 0 individuals 10: 0 individuals 10: 0 individuals What is your usual 0: 0 individuals 0: 0 individuals energy level when 1: 0 individuals 1: 2 individuals engaging in 2: 0 individuals 2: 2 individuals meaningful activities 3: 0 individuals 3: 1 individuals (ex. Laundry, 4: 1 individual 4: 2 individuals cooking, hobbies)? (0 5: 3 individuals 5: 4 individuals 2.64 = no difficulty , 10 = 6: 3 individuals 6: 0 individuals severely decreased 7: 3 individuals 7: 0 individuals energy) 8: 1 individual 8: 0 individuals 9: 0 individuals 9: 0 individuals 10: 0 individuals 10: 0 individuals *Not all individuals answered each question. Results reflect only includes those that answered. SELF-MANAGING CANCER-RELATED FATIGUE 25 Table 3 Sleep Management Questions Pre-Survey Results Post-Survey Results In the past week, have you had trouble falling or staying asleep? Yes: 88.9% (8 individuals) Yes: 77.8% (7 individuals) No: 11.1% (1 individual) In the past week, 0 (times): 1 about how many individual times did you wake 1: 0 individuals up each night? 2: 3 individuals 3: 4 individuals 4: 1 individual 5 or more times: 0 individuals In the past week, how 0-1: 0 individuals many hours of sleep 1-2: 0 individuals were you getting each 2-3: 0 individuals night? 3-4: 0 individuals 4-5: 0 individuals 5-6: 4 individuals 6-7: 2 individuals 7-8: 2 individuals 8-9: 1 individual 9 or more hours: 0 individuals No: 22.2% (2 individuals) 0 (times): 1 individual 1: 2 individuals 2: 4 individuals 3: 2 individuals 4: 0 individuals 5 or more times: 0 individuals 0-1: 0 individuals 1-2: 0 individuals 2-3: 0 individuals 3-4: 0 individuals 4-5: 1 individual 5-6: 1 individual 6-7: 4 individuals 7-8: 2 individuals 8-9: 1 individual 9 or more hours: 0 individuals Do you know how to improve your environment to help promote positive sleep hygiene? In the past week, how many sleep management strategies were you utilizing to assist you with better sleep each night? Yes: 100% (8 individuals) Yes: 87.5% (7 individuals) Mean Score Change/ Percentage Increase 11.1% increase 0.66 0.11 12.5% increase No: 12.5% (1 No: 0% (0 individual) individuals) 0 (strategies): 1 0 (strategies): 0 individual individuals 1: 1 individual 1: 1 individual 2: 5 individuals 2: 6 individuals 0.44 3: 2 individuals 3: 1 individual 4: 0 individuals 4: 0 individuals 5 or more strategies: 5 or more strategies: 0 individuals 1 individual *Not all individuals answered each question. Results reflect only includes those that answered. SELF-MANAGING CANCER-RELATED FATIGUE 26 Appendix B Table 1 Cancer Support Source Survey Concerns Feeling sad or depressed (0 = not at all, 1 = slightly, 2 = moderately, 3 = seriously) Feeling nervous or afraid Worrying about the future and what lies ahead Feeling lonely or isolated Health insurance or money worries Changes or disruptions in work, school or home life Pain and/or physical discomfort Feeling too tired to do the things you need or want to do Thinking clearly (e.g., chemo brain, brain fog) Body image and feelings about how you look Exercising and being physically active Communicating with your doctor Making a treatment decision Intimacy, sexual function and/or fertility Problems in your relationship with your spouse/partner Tobacco or substance use Mean Pre-Program Screening Results Mean PostProgram Screening Results Mean Score Change 0.72 0.81 0.09 0.81 1.18 0.63 1 0.18 0.45 0.54 1 0.73 0.09 0.27 1.45 1.18 0.27 1.45 1 0.45 2.09 1.27 0.82 1.18 0.81 0.37 1 0.81 0.19 1.54 1.18 0.36 0.54 0.45 0.09 1 0.45 0.55 0.81 0.63 0.18 0.45 0.36 0.09 0.18 0 0.18 0.18 SELF-MANAGING CANCER-RELATED FATIGUE 27 Table 2 Brief Fatigue Inventory Questions (summarized) Feeling unusually tired or fatigued in the past week? Mean PreSurvey Results Yes: 56% (5 individuals) Unanswered: 44% (4 individuals) Mean PostSurvey Results Yes: 11% (1 individual) Unanswered: 89% (8 individuals) Mean Score Change N/A Fatigue right now (0 = no fatigue, 10 = as bad as you can imagine) 6.23 4.78 1.45 Usual level of fatigue during the past 24 hours (0 = no fatigue, 10 6.11 4.23 1.88 = as bad as you can imagine) Worst level of fatigue during the past 24 hours (0 = no fatigue, 10 6.78 6.23 0.55 = as bad as you can imagine) How fatigue has interfered with general activity in the past 24 hours (0 = does not interfere, 10 = completely interferes) 6.23 4.67 1.56 How fatigue has interfered with mood in the past 24 hours (0 = 5.67 3.00 2.67 does not interfere, 10 = completely interferes) How fatigue has interfered with walking ability in the past 24 hours (0 = does not interfere, 10 = 4.78 2.89 1.89 completely interferes) How fatigue has interfered with normal work in the past 24 hours (0 = does not interfere, 10 = 6.23 3.78 2.45 completely interferes) How fatigue has interfered with relations with other people in the past 24 hours (0 = does not 5.00 1.18 3.22 interfere, 10 = completely interferes) How fatigue has interfered with enjoyment of life in the past 24 hours (0 = does not interfere, 10 = 5.11 2.89 2.22 completely interferes) *Not all individuals answered each question. Results reflect only includes those that answered.  ...

... Fine-Motor Activities in Kindergarten Classrooms Melody White, Jeffrey Moore, Rachael Struewing, Colleen Yeldell, Hanna Rose, Shannon Spangler 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 1 A Research Project Entitled Fine-Motor Activities in Kindergarten Classrooms 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 Melody White, Jeffrey Moore, Rachael Struewing, Colleen Yeldell, Hanna Rose, Shannon Spangler Doctoral Occupational Therapy Students Approved by: Jennifer Fogo Dec 11, 2020 Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate DeCleene Huber Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Dec 11, 2020 Date 2 Abstract Fine-motor skills, including small muscle development, hand-eye coordination, the ability to form basic strokes smoothly, and the ability to hold utensils or writing tools, are prerequisite skills for handwriting (Donoghue, 1975; Lamme, 1979). Allowing sufficient time for students to engage in fine-motor activities in the kindergarten classroom encourages developing these prerequisite skills (Puranik et al., 2014). In 2003, Marr et al. reported that kindergarten students spent 36-66% of their time participating in fine-motor activities, with up to 42% of that time consisting of paper and pencil tasks. The purpose of the current study is to identify how much time is spent on fine-motor activities, particularly handwriting activities, in kindergarten classrooms today. We observed six kindergarten classrooms for two days to determine the time kindergarten students spent on fine-motor and handwriting activities. We found that kindergarten students spent an average of 40% of the time engaged in fine-motor activities (academic and nonacademic), of which 30.8% was spent in handwriting activities (12.3% of the total observed time). Compared to findings from Marr et al. (2003), kindergarten students are spending a similar amount of time in fine-motor activities in the classroom today. However, they are spending less of that time engaged in handwriting activities, which was highly variable among the classrooms ranging from 12.7 to 46.1%. It is therefore important for occupational therapy practitioners to observe kindergarten classrooms to better support students success in the classroom. 3 Fine-Motor Activities in Kindergarten Classrooms Fine-motor skills, including small muscle development, hand-eye coordination, the ability to hold utensils or writing tools, and the ability to form basic strokes smoothly, are prerequisite skills for handwriting (Donoghue, 1975; Lamme, 1979). Allowing sufficient time for students to engage in fine-motor activities in the kindergarten classroom encourages the development of prerequisite handwriting skills (Puranik et al., 2014). In 2003, Marr et al. found that kindergarten students spent 36-66% of their time engaged in fine-motor activities, and up to 42% of that time they participated in paper and pencil tasks. The authors also reported that much of the time the students spent on paper and pencil tasks were teacher-directed, highlighting the teachers emphasis on integrating fine-motor and handwriting into the kindergarten classrooms. More recently, Caramia et al. (2020) found that 37.1% of the kindergarten school day was spent on fine-motor tasks and 17.8% of fine-motor tasks were paper and pencil tasks. Today, the Common Core Standards require students to utilize a combination of drawing, dictating, and writing to demonstrate an understanding of content (National Governors Association Center for Best Practices, & Council of Chief State School Officers, 2018). However, teachers report having less time to spend on fine-motor and handwriting activities in the classroom due to additional educational standards (Gallant, 2009). For example, the current standards require kindergarten students to produce writing using various digital tools (National Governors Association Center for Best Practices & Council of Chief State School Officers, 2018). Additionally, there has been an increase in the use of technology in schools, with many schools adopting a 1:1 policy indicating that all students receive a tablet or laptop (U.S. Department of Education, 2017). One can assume the amount of time teachers spend on finemotor tasks, specifically handwriting instruction, has changed with the increased use of 4 technology, but that remains unknown (Kiefer et al., 2015). The purpose of this study was to identify how much time is spent on fine-motor activities, particularly handwriting activities, including paper and pencil tasks, in kindergarten classrooms today. Handwriting difficulties continue to be one of the most frequent reasons for referral to occupational therapy (OT) in schools within the United States (Benson et al., 2016). Early writing has been found to predict academic success (Nye & Sood, 2018) and students continue to use writing in the classroom to express ideas and demonstrate understanding and knowledge, even with an increased emphasis on technology (McMaster & Roberts, 2016). Occupational therapy practitioners address handwriting acquisition by identifying deficits in fine-motor skills (Nye & Sood, 2018). Early intervention is imperative to increase the likelihood of improving the handwriting of students (Dinehart, 2014). Occupational therapy practitioners would benefit from a current report of the types of activities and the amount of time allocated to those activities to develop an intervention consistent with the needs of kindergarten children in the classroom. Literature Review Developmentally, kindergarten students are refining fine-motor and visual perceptual skills to perform activities such as handwriting (Beery, 1997). Occupational therapy practitioners understand how fine-motor skills, visual-motor integration, and sensory processing interact and impact handwriting (Beery, 1997). Occupational therapy practitioners use this knowledge to identify deficits and facilitate the acquisition of developmentally appropriate handwriting skills (Nye & Sood, 2018). The literature review will address the defining factors of fine-motor skills, the role of handwriting skills in childrens academic success, the impact of fine-motor and handwriting instruction on the development of these skills, the impact of technology on these skills, and the role of occupational therapy in handwriting in kindergarten classrooms. 5 Importance of Handwriting In a qualitative analysis of teachers views on the importance of handwriting in the classroom, Sharp and Brown (2015) concluded that handwriting provides a kinesthetic route for information to enter memory which is critical for learning. Handwriting is a means to demonstrate thinking and knowledge, and written documents are often judged by the quality of the writers handwriting (Sharp & Brown, 2015). Improper handwriting mechanics not only negatively affect the production of written text but can also impact other aspects of written communication, such as the formation of language and story ideation (Klein et al., 2011). When students need to focus attention on the correct formation of letters, they cannot efficiently compose written work (Graham et al., 1998). Therefore, when students have difficulty with handwriting, they often receive lower grades that neither represents their full capability nor their understanding of the content. Poor handwriting can serve as an indicator for academic risk (Collette et al., 2017) and proper handwriting mechanics can be difficult to reconstruct if they are not properly taught when students learn to write (Arslan, 2012). It is imperative that students acquire handwriting skills at a young age because it is necessary throughout school and into adulthood. Recently, increased academic demands place a higher expectation on students to acquire handwriting skills at an accelerated rate (Nye & Sood, 2018). Preschoolers are expected to begin writing but are not taught proper handwriting mechanics (Byington & Kim, 2017). As students progress in school, written tasks begin to lengthen and intensify, requiring a higher processing level to produce the text. One of the key components of handwriting is fine-motor coordination (Amundson, 2001; Bara & Gentaz, 2011). However, there are currently no educational standards directly related to gross or fine-motor skill acquisition in kindergarten (National Governors 6 Association Center for Best Practices, & Council of Chief State School Officers, 2018). Nevertheless, according to Reid et al. (2006), students with fine-motor difficulties accounted for the largest population receiving special education services in elementary school. Therefore, handwriting must be taught well to strengthen the writing process and to enhance the students skills of conveying their knowledge (Collette et al., 2017). Due to the implementation of the Common Core curriculum, however, kindergarten teachers are forced to devote instructional time to core subjects, allocating little time for the development of the fine-motor skills necessary for success in handwriting (Gallant, 2009). According to Asher and Estes (2016), kindergarten teachers are beginning to use different techniques and are adapting how they instruct handwriting skills in the classroom. This often leads to an inconsistent emphasis on handwriting activities among kindergarten teachers. Baggott (2012) used a questionnaire, writing sample, and field notes to examine the teachers methods and preparations for writing instruction. The teachers stated that they lacked confidence in providing handwriting instruction to students (Baggott, 2012). Teachers lack of confidence in their ability to provide handwriting instruction to students may be because they have not learned a standard handwriting curriculum (Graham et al., 2008). Teachers may lack an understanding of the progression of skill development required for effective and efficient handwriting. This results in teachers not having a clear, organized framework to teach handwriting (Schlagal, 2014; Troia & Graham, 2003), impacting the amount of time and effort teachers put into teaching handwriting skills. Time Allotted to Handwriting Instruction Graham et al. (2008) interviewed 169 primary school teachers (grades 1-3) and found the teachers spent an average of 70 minutes a week teaching handwriting. Furthermore, 52% of the 7 teachers spent no more than 10 minutes each day teaching handwriting (Graham et al., 2008). Puranik et al. (2014) observed 21 teachers and 238 students in kindergarten classrooms during a 90-minute reading and language arts block in both the fall and winter seasons to determine the amount of time allocated to writing and the types of instructional practices used. They found that the amount of time allocated to writing instruction ranged from 0.00 minutes to 8.86 minutes, and the amount of time the kindergarten students independently worked on writing activities ranged from 0.00 to 20.58 minutes (Puranik et al., 2014). In addition, Puranik et al. found that the average amount of time students in the kindergarten classrooms spent on writing activities differed from fall to winter (6.10 minutes and 10.50 minutes, respectively). More recently, Nye and Sood (2018) found the time dedicated to handwriting instruction in a kindergarten classroom averaged 48 minutes a week over the course of three and a half days, and the handwriting was embedded in the reading curriculum. In 2020, Caramia et al. observed a kindergarten, second grade, and fourth-grade classroom over 6 days. Caramia et al. (2020) discovered that 37.1% of a kindergarten students school day was allocated to fine-motor activities in a kindergarten classroom. Of this time, 17.8% was allocated to paper and pencil tasks in a kindergarten classroom (Caramia et al., 2020). Technology Recent research indicates that not all handwriting instruction involves the traditional pencil and paper method. Technology is a new instructional strategy that schools have implemented and some teachers use technology to integrate fine-motor skills and to teach handwriting (McMaster & Roberts, 2016). In 2013, Rideout discovered a 32% increase in tablet computer use within the kindergarten classroom since 2011. Since then, writing devices such as computers, tablets, and SMART Boards have replaced handwriting in schools (Kiefer et al., 8 2015). A study conducted by Blazer (2010), suggested that the increase in the relevance and efficiency of typing as a writing method has made the development of keyboarding skills a priority in the classroom over the development of handwriting skills. Therefore, it can be assumed that technology has had a substantial impact on handwriting activities in the classroom. Using hands to manipulate toys and other objects, such as writing instruments, requires more coordination of muscle physiology, joint stability, visual perception, and haptic perception than using touch screen devices that require simple actions such as tapping, pressing, swiping, dragging, and zooming (Case-Smith & Exner, 2015; Price et al., 2015). There is also a significant difference in kinesthetic feedback when writing on a tablet surface with a plastictipped pen versus writing on paper with a ballpoint pen (Price et al., 2015). Researchers found that using a plastic-tipped pen affected the legibility and motion of the students hands when forming letters due to the students pausing longer between the strokes (Patchan & Puranik, 2016; Price et al., 2015). Nevertheless, teachers are implementing the use of tablets and other forms of digital writing instead of pencils and paper for writing tasks (Kiefer et al., 2015), impacting finemotor and handwriting activities in the classroom (McMaster & Roberts, 2016). There is a lack of information on the current amount of time spent on fine-motor activities, handwriting instruction, and technology in the kindergarten classroom today. The technological advancements and increased writing demand in schools necessitate the development of effective handwriting skills in students and support the need for occupational therapy in the classroom (McMaster & Roberts, 2016). Although there have been significant technological advancements in recent years, occupational therapy practitioners continue to use traditional, functional activities such as cutting with scissors, drawing, and constructive, manipulative play to improve fine-motor skills (Lin et al., 2017), which are prerequisites for 9 handwriting (Donoghue, 1975; Lamme, 1979). If occupational therapy practitioners, who work with kindergarten students to improve handwriting, have a thorough understanding of the time students spend on fine-motor and handwriting activities in the classroom, they will be more equipped to collaborate with teachers to supplement those activities to facilitate greater improvement in the child. The purpose of this study was to replicate the seminal research by Marr et al. (2003) to identify the current amount of time allocated to fine-motor and handwriting activities in kindergarten classrooms today. Methods Study Design We used an observational, cross-sectional, descriptive study to examine the time students spend engaged in fine motor and handwriting activities in kindergarten classrooms. The University of Indianapolis Human Research Participant Program Committee determined this research was exempt due to the observational nature of the study. Data Collection Procedures We contacted two school districts in central Indiana to obtain permission to collect data in kindergarten classrooms. Only one of the school districts responded and agreed to participate. The participating district was in central Indiana, where the population had a median income of $49,985 (U.S. Census Bureau, 2018). We observed six regular education kindergarten classrooms from one early learning center in the district. According to the Indiana Department of Education, 75.9% of the students in this school were black, 10.8% were Hispanic, 7.5% were multiracial, and 5.3% were white (IDOE Compass, 2020). Two classrooms were Spanish immersion classrooms. The students in these classrooms received the standard kindergarten curriculum; however, 80% of their instruction was delivered in Spanish. All classrooms had 10 some students who received a response to intervention (RTI) or special education services. However, we observed the class as a whole; therefore, we did not consider individual student learning needs. Prior to data collection, our team of six researchers participated in a training with the primary researcher to review the procedures for documenting and describing activities using the data collection sheet (See Appendix A). The methods of data collection were adapted from the seminal research of McHale and Cermak (1992), Marr et al. (2003), and a more recent study by Carmina et al. (2020). Our team of researchers was divided into pairs. Each pair simultaneously and independently observed and documented the activities in two classrooms for two school days. In total, the team of researchers observed six classrooms for two days each. All the observations took place during one week in mid-August. Classrooms 1, 2, and 3 were observed on Monday and Wednesday. Classrooms 4, 5, and 6 were observed on Tuesday and Thursday. We observed from noninvasive locations in each classroom and documented our observations using laptop computers on the data collection sheet created in Microsoft Excel. Unlike previous studies, we limited our observation to our assigned primary classrooms, allowing us to fully examine the time kindergarten students spend on various activities during the school days primary instructional periods. We started recording activities when the morning bell rang and finished documenting activities after the students were dismissed from the classroom at the end of the day. Each time the students left the classroom, we stopped documenting activities and resumed when they returned to the classroom. Therefore, we did not observe or document activities during lunch, recess, or specials (music, art, gym, etc.). However, we did document the time students spent getting into line to leave the room and the time students spent putting materials away or gathering materials for the next activity in the classroom. Consistent with the 11 data collection procedures from previous research (Carmina et al., 2020; Marr et al., 2003, McHale & Cermak, 1992), we documented the start and stop times of each activity and provided a thorough description of all classroom activities using the data collection sheet. As researchers, we also made general notes about occurrences within the classroom that may have impacted the activity, such as a student misbehaving or the contextual environment where the activity took place. Data Analysis To maintain the reliability of documenting the time spent on activities, the pair of researchers observing each classroom met during lunch and at the end of the day to review and compare our descriptions of the activities recorded in that classroom. After all the data were collected, we combined the two data collection sheets per classroom to create one data collection sheet per day per classroom. This allowed for a more comprehensive description of the activities because we often described activities with slightly different details. During this time, we also discussed and agreed upon whether the activity should be classified as a fine-motor activity, an academic activity, and/or a technology activity. These categories were not mutually exclusive, and they were only used to assist with the final categorization. Throughout this process we also maintained notes about the rationale for categorization, which contributed to the descriptions of activities, making it easier to place activities in a final category. Similar to the methods used by Carmina et al., 2020; Marr et al., 2003; McHale & Cermak, 1992, we intended to capture the activities of the classroom as a whole. Therefore, the final analysis of activities only included the activities in which more than 50% of the students engaged. As researchers, we documented all occurrences in the classroom except for individual activities. Activities such as when a student was in time-out, making a choice on the SMART 12 Board for the class, or when several students were pulled from the whole group to work independently with an aid or the teacher were documented but not included in the final list of activities to be analyzed. If we recorded different start and stop times for activities, we averaged the recorded time for the final documented activity time. After we combined the individual data sheets into one data sheet per classroom per day, our whole team of researchers met to further categorize each activity into one of seven categories. The categories were similar to the categories used by Carimina et al. (2020) minus the categories of dining and unstructured gross motor (predominantly recess) because we only observed time in the classroom. The resulting categories included fine-motor-academic, fine-motor-nonacademic, academic-non-fine motor, nonacademic-no fine-motor or gross motor, technology, structured gross motor, and transition. If the fine-motor activity involved students learning how to write and form letters, including any time they held a writing instrument, we also categorized the activity as a handwriting activity. These tasks included coloring with crayons, writing on a whiteboard with a marker, writing on paper with markers or pencils, and any activity that involved the students learning how to form letters accurately, such as air writing (writing letters with isolated digits in the air). This allowed us to calculate the total time spent in fine-motor activities and the time spent specifically on handwriting activities. Similar to the categorization of Caramia et al. (2020), we categorized activities that included the students gathering or putting away materials between activities in the classroom and the time to line up to leave the classroom as a transition activity. If the students used fine-motor skills such as picking up objects, opening and closing small containers or manipulating fasteners on backpacks during the transition, we allocated 25% of the transition time as a fine-motor activity (Caramia et al., 2020). Table 1 contains a list of activity examples for each category. 13 Table 1 Examples of Activities in Each Category Fine-motor nonacademic Free choice when more than 50% activities involved fine-motor manipulation or grasping Fine-motor academic Writing on worksheets or paper Using isolated digits for pointing when reading Manipulating flashcards Academic no fine-motor Teacher providing instruction Circle time, calendar, Watching educational video Nonacademic no fine-motor, Taking attendance no gross motor Technology Anytime more than 50% of students engaged in activity with technology. Structured gross motor Class movement breaks Dancing to video for movement 14 Transition Time moving from one class activity to another activity Getting into and standing in line to leave the classroom To ensure that we categorized the recorded activities similarly, our team of researchers met as a group and categorized the activities from two classrooms from the first day of observation. During this time, we discussed and reached consensus about the appropriate categorization for all activities that occurred in the two classrooms. As researchers, we also maintained notes about our rationale for activity placement in specific categories allowing us to continue the rationale throughout the categorization process. After we became familiar with the descriptions and we were consistently categorizing the activities similarly; we continued working in pairs to categorize the documented activities from our observed classrooms. If the pair of researchers, questioned the appropriate categorization, we brought it back to the group for discussion until the group reached a consensus about the final category placement. The final list of activities and the time spent on each activity was transferred to Microsoft Excel spreadsheets so that the total time spent in each category could be easily calculated and compared across each classroom and category. In order to calculate the total time spent in finemotor activities, the categories of fine-motor nonacademic, fine-motor academic, and 25% of transition time were combined to obtain a composite fine-motor score. Results We observed an average of 4.37 hours (262.67 minutes) per day, ranging from 249 to 297 minutes per day. This resulted in a total observation time of 3,152 minutes (131.33 hours) across 15 six classrooms for two days in each classroom. We categorized the activities, totaled the time spent on activities within each category and calculated the percentage of time the kindergarten students spent in each type of activity based on the total observed time (see Table 1). 16 Table 1 Percentage of Time Spent in Each Category Categories of Activities Total minutes observed Percentage of overall time Fine-motor non-academic 292 9.3 Fine-motor academic 947 30 1,049 33.3 Non-academic, no finemotor 50 1.6 Technology 0 0 Structured gross motor 186 5.9 Transition 628 19.9 1,260 40.0 399 12.7 Academic, no fine-motor *Fine-motor composite **Handwriting Note: The percentage of time spent in each category is based on the overall observation time of 3152 minutes. *Fine-motor composite includes time spent in fine-motor academic, fine-motor non-academic, and 25% of time spent in transition. ** Time spent in handwriting was also included as time spent in fine-motor academic. Combining fine-motor non-academic activities, fine-motor academic activities, and 25% of the transition time indicated that the kindergarten students spent 40% of their overall time 17 engaged in fine-motor activities and 12.7% of total time on handwriting activities. This compares to 63.2% of the time engaged in activities that did not include any fine-motor activities (See figure 1). . Figure 1. Percentage of time allocated to fine-motor tasks. FM = fine-motor; HWA = handwriting activities.. Based on the average time observed over two days in each classroom, the time students engaged in fine-motor activities (FMC) and handwriting activities (HWA) varied per classroom from 28% to 45.9% and 7.3% to 19.6%, respectively. Interestingly, there was greater variability among the classrooms in the percentage of time students engaged in fine-motor activities that were handwriting activities (12.7% to 46.0%). This indicates that even though the kindergarten students in some classrooms spent a significant percentage of their time engaged in fine-motor activities, the activities were not necessarily activities incorporating handwriting. In addition, even though there were times when one or two students were called to select answers on a SMART Board, there were no times when more than 50% of the students in the classroom 18 were engaged in computer or technology related activities. Table 2 depicts the percentage of time spent in each category per classroom. Table 2 Average Percentage of Day Students Spent on Activities in Each Category per Class FM NA FM A A NFM NA, NFM Tech. SGM Transition FMC HWA HW% of FMC 1 10.8% 32.3% 39.1% 2.7% 0.00% 2.5% 12.7% 45.9% 8.1% 12.7% 2 8.6% 26.7% 32.1% 0.00% 0.00% 4.3% 28.3% 34.5% 14.6% 42.6% 3 7.1% 35.7% 23.0% 2.8% 0.00% 7.9% 23.6% 42.8% 19.6% 46.1% 4 12.8% 27.5% 39.0% 1.2% 0.00% 4.6% 14.9% 43.6% 9.8% 22.6% 5 9.1% 20.6% 41.3% 0.00% 0.00% 12.5% 16.6% 27.8% 7.3% 28.1% 6 6.9% 35.0% 27.3% 2.8% 0.00% 3.9% 24.0% 44.6% 14.4% 32.1% Class Note. FM = fine-motor; NA = nonacademic; A = academic; NFM = non-fine-motor; Tech. = technology; SGM = structured gross motor; FMC = fine-motor composite; HWA = handwriting activities; HW% of FMC% = percentage of fine-motor composite that were handwriting tasks. Figure 2 provides a graphic comparison of the time the kindergarten students spent engaged in fine-motor and handwriting activities within each classroom and how that time compares to the mean percentage of time spent in each category. This provides a visual depiction of the wide variability of fine motor and handwriting activities among the six classrooms. 19 Figure 2 Comparison of fine-motor and handwriting activities across classrooms. Figure 2. Percentage of time allocated to fine-motor tasks and handwriting activities per class. FM = fine-motor; Avg = average. Discussion Similar to the recent findings of Caramia et al. (2020), the results of this study suggest that fine-motor skills continue to be important for students in kindergarten. Kindergarten students in our study spent approximately 40% of time in the classroom engaged in activities that required fine-motor skills. These findings were also consistent with the results of McHale and Cermak (1992), who found that 31%-60% of the school day was spent in fine-motor activities, and the results of Marr et al. (2003), whose results indicated that kindergarten students spent 20 46% of the school day on fine-motor activities. Thus, kindergarten teachers continue to provide activities in the classroom that require fine-motor skills. Although the kindergarten students in this study spent relatively the same percentage of time engaged in fine-motor activities as found in previous studies, the percentage of the time that was categorized as handwriting activities was different. For example, the current study found that 30.8% of the fine-motor activities were related to handwriting. Caramia et al. (2020) observed that kindergartners spent on average 17.8% of the time allocated to fine-motor tasks on handwriting activities. This difference may be because we only examined the activities within the classroom in this study, whereas Caramia et al. considered the activities throughout the whole school day. Kindergarten students require fine-motor skills throughout the day, such as in the cafeteria to open packages and containers or to manipulate food however, students may not engage in handwriting activities outside of the main classroom. It is also uncertain if we categorized handwriting activities similarly. For example, we included all activities that involved learning letter formation, such as air writing, in the category of handwriting. Whereas, Caramia et al. (2020) used the category of paper and pencil tasks. This may assume they only placed activities in this category if the activity involved the use of paper and a writing utensil. McHale and Cermak (1992) found that kindergartners spent approximately 85% of the fine motor time on paper and pencil activities. Marr et al. (2003) found that kindergarten students spent 42% of the time dedicated to fine motor activities on handwriting. Those findings were still greater than the percentage of fine motor activities observed to be related to handwriting in our results. This could represent the changes that have occurred in the kindergarten classrooms today due to the demands placed on kindergarten teachers to teach to the common core standards (Gallant, 2009). Teachers today may also not be teaching handwriting because they are not as 21 confident in providing handwriting instruction (Baggott, 2012). Learning a handwriting curriculum is often not included as a standard component of teacher education (Graham, 2008). The findings in this study also suggest a high degree of variability among the classrooms in the percentage of fine-motor time allocated to handwriting instruction (12.7% in one classroom compared to 46.6% in another classroom). This could be attributed to differences in teachers comfort teaching handwriting (Graham et al., 2008), teaching style (Sharp & Brown, 2015), or the readiness of the students in each classroom (Marr et al., 2003). Further research should be done to examine the factors contributing to the amount of time kindergarten students spend on handwriting activities in the classroom. Interestingly, even though the observations in this study were limited to time in the classroom, the percentage of time the students spent transitioning between activities or transitioning to leave the classroom (between 12.7% and 28.3 %) was consistent with findings of Caramia et al. (2020), who reported kindergarteners spent between 18.9% to 23.4% of their time transitioning. This provides further support that transitioning between activities needs to be recognized as an important occupation of young students in school (Caramia et al., 2020). Students need to be able to transition in and out of the classroom as well as transition between activities within the classroom throughout the school day. Fine-motor tasks are often embedded in transitional activities, therefore students that struggle with fine-motor tasks may have increased difficulties with transitions throughout the day (Caramia et al., 2020). We documented that the teachers in this study used technology such as a SMART Board in classrooms to assist with instruction. The teachers also occasionally called one or two students to respond to questions on the SMART Board. This was not, however, considered a fine-motor activity because less than 50% of the students participated in the activity. Some 22 teachers also worked one on one with select students on a device for additional practice in academic work, which was noted but not recorded as an activity. Therefore, the results of this study surprisingly indicated that the kindergarten students overall did not spend any time during the six days engaged in technology activities. Caramia et al. (2020) found that kindergarten students spent 4% of the time in the classroom engaged in technology. This small difference may be due to specific school or classroom access to technology. It may also be reflective of the fact that we collected data at the start of the school year and the teachers simply had not yet introduced technology into the classroom. However, that was beyond the scope of this research. We recommend that more research be conducted to further explore the childrens use of technology in kindergarten classrooms. Conclusion Implications for Practice One of the main reasons a child is referred to occupational therapy services in the schools is their difficulty with handwriting (Benson et al., 2016). Occupational therapy practitioners who understand the time students spend in the kindergarten classroom on fine-motor and handwriting activities will be better equipped to collaborate with teachers to improve a childs performance on these required skills. Occupational therapy practitioners can also use this information to create specific intervention strategies that build upon the activities in the classroom to further enhance the students' performance in the classroom. However, it is also important to understand that there can be a significant difference in the percent of time spent in fine-motor and handwriting activities from one classroom to another classroom. It is therefore important for school-based occupational therapy practitioners to observe each students classroom to have a clear understanding of specific skills a student needs in order to be successful in their classroom. We 23 found the percentage of time kindergarten students engage in activities requiring technology remains low, even though there has been a reported increase in technology use in schools (Kiefer et al., 2015). Observing activities in the classroom will also inform occupational therapy practitioners about the specific use of technology in the classroom. This will allow the occupational therapy practitioner to provide appropriate support to students based on the required technology use in the students classroom. Limitations and Future Research Readers must be cautious about generalizing this studys results due to the small sample of six observed classrooms from one early learning center. It will be important to explore the time spent in kindergarten classrooms from a wide geographical area to determine if the percent of time spent in fine-motor and handwriting activities remains consistent. Also, our team of researchers observed and recorded the activities in these classrooms at the beginning of the school year with the students having only been in class for approximately three weeks. Kindergarten was the first formal school experience for many of the students in this school district. Future research should be done to determine if the time students spend in activities in the classroom changes from the beginning of the school year to the end of the school year. It can only be assumed that the time needed for transitions within the classroom will decrease as the students become more familiar with the routine and expectations of the classroom. Other factors that may impact the activities in the classroom that should be explored include teacher experience, and classrooms that are designed for students for whom English is a second language. 24 References Amundson, S. J. (2001). Prewriting and handwriting skills. In J. Case-Smith (Ed.), Occupational therapy for children (4th ed.) (pp. 545566). Mosby. Arslan, D. (2012). Examining first grade teachers handwriting instruction. Educational Sciences: Theory & Practice, 12(4), 28392845. Asher, A., & Estes, J. (2016). Handwriting instruction in elementary schools: Revisited! Journal of Occupational Therapy, Schools, & Early Intervention, 9(4), 353365. https://doi.org/10.1080/19411243.2016.1239560 Baggott, M. (2012). Teacher preparation and practices of writing instruction. Fisher Digital Publications 5, 249. Bara, F., & Gentaz, E. (2011). Haptics in teaching handwriting: The role of perceptual and visuomotor skills. Human Movement Science, 30(4), 745759. https://doi.org/10.1016/j.humov.2010.05.015 Beery, K. E. (1997). The Beery-Buktenica developmental test of visual-motor integration (Rev. 4th ed.). Modern Curriculum Press. Benson, J. D., Szucs, K. A., & Mejasic, J. J. (2016). Teachers perceptions of the role of occupational therapist in schools. 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Indiana Department of Education. https://compass.doe.in.gov/dashboard/overview.aspx?type=school&id=5295 Kiefer, M., Schuler, S., Mayer, C., Trumpp, N. M., Hille, K., & Sachse, S. (2015). Handwriting or typewriting? The Influence of pen- or keyboard-based writing training on reading and writing performance in preschool children. Advances in Cognitive Psychology, 11(4), 136146. https://doi.org/10.5709/acp-0178-7 Klein, S., Guiltner, V., Sollereder, P., & Cui, Y. (2011). Relationships between fine-motor, visual-motor, and visual perception scores and handwriting legibility and speed. Physical & Occupational Therapy in Pediatrics, 31(1), 103114. Lamme, L.L., (1979). Handwriting in an early childhood curriculum. Young Children. 35(1), 2027. Lin, L.-Y., Cherng, R.-J., & Chen, Y.-J. (2017). Effect of touch screen tablet use on fine motor development of young children. Physical & Occupational Therapy In Pediatrics, 37(5), 457467. https://doi.org/10.1080/01942638.2016.1255290 Marr, D., Cermak, S., Cohn, E. S., & Henderson, A. (2003). Fine motor activities in Head Start and kindergarten classrooms. American Journal of Occupational Therapy, 57, 550557. McHale, K., & Cermak, S. (1992) Fine motor activities in elementary school: Preliminary findings and provisional implications for children with fine motor problems. American Journal of Occupational Therapy, 46, 898903. McMaster, E., & Roberts, T. (2016). Handwriting in 2015: A main occupation for primary school-aged children in the classroom?. Journal of Occupational Therapy, Schools, & Early Intervention, 9(1), 3850. 27 National Governors Association Center for Best Practices & Council of Chief State School Officers. (2018). Common core state standards initiative for english language arts: Writing: Kindergarten. Common Core State Standards Initiative. http://www.corestandards.org/ELA-Literacy/W/K/ Nye, J. A., & Sood, D. (2018). Teachers' perceptions of needs and supports for handwriting instruction in kindergarten. Open Journal Of Occupational Therapy (OJOT), 6(2), 112. https://doi.org/10.15453/2168-6408.1411 Patchan, M. M., & Puranik, C. S. (2016). Using tablet computers to teach preschool children to write letters: Exploring the impact of extrinsic and intrinsic feedback. Computers & Education, 102, 128137. https://doi.org/10.1016/j.compedu.2016.07.007 Price, S., Jewitt, C., & Crescenzi, L. (2015). The role of iPads in pre-school childrens mark marking development. Computers & Education, 87, 131141. Puranik, C., Al Otaiba, S., Sidler, J., & Greulich, L. (2014). Exploring the amount and type of writing instruction during language arts instruction in kindergarten classrooms. Reading & Writing, 27(2), 213236. https://doi.org/10.1007/s11145-013-9441-8 Reid, D., Chiu, T., Sinclair, G., Wehrmann, S., & Naseer, Z. (2006). Outcomes of an occupational therapy school-based consultation service for students with fine motor difficulties. Canadian Journal of Occupational Therapy, 73(4), 215224. Rideout, V. (2013). Zero to eight: Children's media use in America 2013. Common Sense Media. Common Sense Media. https://www.commonsensemedia.org/file/zero-to-eight-2013pdf0/download 28 Schlagal, B. (2014). Best practices in spelling and handwriting. In S. Graham, C. MacArthur, & J. Fitzgerald (Eds.), Best practices in writing instruction (2nd ed.) (pp. 257283). Guilford Press. Sharp, L., & Brown, T. (2015). Handwriting instruction: An analysis of perspectives from three elementary teachers. Texas Journal of Literacy Education, 3(1), 2937. Troia, G. A., & Graham, S. (2003). Effective writing instruction across the grades: What every educational consultant should know. Journal of Educational and Psychological consultation, 14(1), 7589. U.S. Census Bureau. (2018). Quickfacts: Marion County, Indiana. U.S. Census Bureau. United States Census Bureau. https://www.census.gov/quickfacts/fact/table/marioncountyindiana,hamiltoncountyindian a,US/PST045218 U.S. Department of Education & Office of Educational Technology. (2017). Reimagining the role of technology in education (National Education Technology Plan Update). Department of Education Office of Educational Technology. https://tech.ed.gov/files/2017/01/NETP17.pdf 29 Appendix A Signature: Jennifer Fogo (Dec 11, 2020 09:15 EST) Email: jfogo@uindy.edu Signature: Email: decleenek@uindy.edu Fogo Research Paper Final Audit Report Created: 2020-12-11 By: Kristin Arnes (arnesk@uindy.edu) Status: Signed Transaction ID: CBJCHBCAABAADgcpVBFjGJtKin8zfrG5to8VvweQwIYj 2020-12-11 "Fogo Research Paper" History Document created by Kristin Arnes (arnesk@uindy.edu) 2020-12-11 - 0:11:29 AM GMT- IP address: 69.174.160.116 Document emailed to Jennifer Fogo (jfogo@uindy.edu) for signature 2020-12-11 - 0:12:28 AM GMT Email viewed by Jennifer Fogo (jfogo@uindy.edu) 2020-12-11 - 2:14:44 PM GMT- IP address: 47.227.212.164 Document e-signed by Jennifer Fogo (jfogo@uindy.edu) Signature Date: 2020-12-11 - 2:15:23 PM GMT - Time Source: server- IP address: 47.227.212.164 Document emailed to Kate DeCleene Huber (decleenek@uindy.edu) for signature 2020-12-11 - 2:15:25 PM GMT Email viewed by Kate DeCleene Huber (decleenek@uindy.edu) 2020-12-11 - 2:16:16 PM GMT- IP address: 69.108.47.154 Document e-signed by Kate DeCleene Huber (decleenek@uindy.edu) Signature Date: 2020-12-11 - 2:16:25 PM GMT - Time Source: server- IP address: 69.108.47.154 Agreement completed. 2020-12-11 - 2:16:25 PM GMT  ...

... Running head: THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION Client Outcomes: The Relationship Between Satisfaction and Functional Change in Occupational Therapy Erin K. Peterson, Elizabeth Brock, Emily Hess, Kelly Randall, Catherine Salo, and Corrine Sisson December 2, 2020 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 THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION A Research Project Entitled Client Outcomes: The Relationship Between Satisfaction and Functional Change 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 Elizabeth Brock, OTS, PCBIS; Emily Hess, OTS; Kelly Randall, OTS; Catherine Salo, OTS, PCBIS; and Corrine Sisson, OTS Approved by: Erin Peterson Dec 11, 2020 Research Advisor (1st Reader) Date Accepted on this date by the Doctor of Occupational Therapy Program Director: Alison Nichols OTD Program Director Dec 11, 2020 Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate DeCleene Huber Chair, School of Occupational Therapy Dec 11, 2020 Date 1 THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 2 Client Outcomes: The Relationship Between Satisfaction and Functional Change in Occupational Therapy Erin Peterson, Elizabeth Brock, Emily Hess, Kelly Randall, Catherine Salo, and Corrine Sisson University of Indianapolis THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 3 Abstract In 2019 CMS required occupational therapy (OT) practitioners to use the Quality Payment Program (QPP) and the Merit-Based Incentive Payment System (MIPS) to relate quality of care to cost-efficient care. OT practitioners must report information on Medicare B beneficiaries using outcome measures to assess functional change and client satisfaction with therapy services. The purpose of this study was to investigate potential correlations between outpatient OT patients Focus on Therapeutic Outcomes (FOTO) scores and National Research Corporation Health Real-time (NRCHRT) responses to examine relationships between functional change and client satisfaction. Researchers analyzed retrospective data collected from OT patients with orthopedic upper extremity injuries seen from October 2017 to March 2019 at a large hospital-based outpatient therapy department. Wilcoxon signed-rank test determined a statistically significant median improvement of 20 points in FOTO change scores following therapy for all participants, z= 20.98, p< .001. The participants were grouped into promoters, passives, and detractors based on NRCHRT Net Promoter Score (NPS). A Kruskal-Wallis H test was conducted to determine if there were differences in FOTO change scores between the three groups of participants: promoters (n = 591, Mdn = 21 points), passives (n = 36, Mdn = 19 points), and detractors (n = 22, Mdn = 14.50 points). The promoter group had a greater FOTO median change compared to the detractor group. While this was not statistically significant, clinically significant differences were present between groups. THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 4 Client Outcomes: The Relationship Between Satisfaction and Functional Change in Occupational Therapy According to the Medicare Payment Advisory Commission (2018), the amount of money Medicare is spending on beneficiaries is projected to increase due to the aging Baby Boomer generation. Due to the current economic and sociopolitical climates, the Centers for Medicare and Medicaid Services (CMS) desires to eliminate unnecessary expenses by replacing current fee-for-service reimbursement models with value-based reimbursement (Medicare Program, 2012). Proponents of value-based reimbursement claim these new payment models will reduce healthcare costs by linking the amount of reimbursement given to hospitals to the quality of care patients receive (Leland, Crum, Phipps, Roberts, & Gage, 2014). In addition, experts suggest this will promote an increase in the use of evidence-based practices by healthcare providers, which will in turn lead to improved patient outcomes (Leland et al., 2014). In 2019, CMS required occupational therapy (OT) practitioners to use the Quality Payment Program (QPP), a value-based reimbursement model (QPP, 2019a). In this new payment model, OT practitioners who meet certain criteria must use the Merit-Based Incentive Payment System (MIPS), to relate quality of care to cost-efficient care, by requiring OT practitioners to report information on Medicare B beneficiaries in two performance categories: quality measures and improvement activities (QPP, 2019a). CMS currently accepts multiple outcome measures to fulfill these reporting requirements (QPP, 2019b). Two commonly used outcome measures in outpatient OT include Focus on Therapeutic Outcomes (FOTO), to measure functional change (quality of care), and the National Research Corporation Health Realtime (NRCHRT) feedback survey, to measure patient satisfaction (an improvement activity). FOTO is used nationally by healthcare professionals to measure a clients functional change in THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 5 therapy, and clinicians use the functional outcome measures created by FOTO to assess a patients functional status at various times during the episode of care (FOTO, 2018). NRCHRT is a valid and reliable tool commonly used to measure patient satisfaction with therapy services (Co, Sternberg, & Homer, 2011). The purpose of NRCHRT is to provide a platform for patients to voice their opinions, values, and concerns to assist healthcare organizations in improving patient care outcomes (NRC Health, n.d.). Upon a review of the literature, researchers did not find existing studies exploring correlations specifically between patients FOTO scores and NRCHRT satisfaction ratings with outpatient OT services; however, previous researchers have investigated relationships between general functional status and overall satisfaction with healthcare (Custer, Huebner, & Howell, 2015; Hart & Wright, 2002; Mller et al., 2020; Pekarik & Guidry, 1999; Schrier et al., 2019). Therefore, the purpose of this study was to investigate potential relationships between outpatient OT patients FOTO change scores and NRCHRT responses to better examine links between functional change and patient satisfaction. Literature Review Medicare and Value-Based Reimbursement By way of the Affordable Care Act, CMS has attempted to shift the healthcare system from fee-for-service reimbursement to value-based reimbursement (Leland et al., 2014). The goals of value-based reimbursement are to improve health outcomes, enhance patient satisfaction, and to reduce the costs of healthcare (Leland et al., 2014). CMS initiated the QPP and the MIPS to reform reimbursement procedures and amounts dispensed to Medicare B providers (QPP, 2019a). As of 2019, OT practitioners who treat Medicare B beneficiaries, and who meet certain other inclusion criteria, are required to report data in two categories per the THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 6 QPP: quality measures and improvement activities (QPP, 2019a). To satisfy reporting requirements for quality, clinicians must measure patients functional change scores using appropriate outcome tools (QPP, 2019a). Additionally, providers must demonstrate evidence of process improvement activities including beneficiary engagement (QPP, 2019c, p. 2). One example of this is the collection and follow-up on patient experience and satisfaction data on beneficiary engagement, including the development of improvement plans (QPP, 2019d, p. 4). CMS currently accepts a variety of tools to measure both quality and improvement activities including FOTO and NRCHRT (QPP, 2019a). Quality Measures and FOTO FOTO is used nationally by healthcare professionals to measure and assess a patients functional status at various times during the therapy episode of care (FOTO, 2019). FOTO created their own regional assessments specific to parts of the body, but it also exists as a database that allows collection and analysis of scores (FOTO, 2019). The FOTO database was created so that data could be obtained more efficiently and effectively (FOTO, 2019). Responses from the FOTO assessments are collected via surveys using a computerized adaptive testing (CAT) process to determine patient demographics and self-perceived functional status (FOTO, 2019). FOTO allows risk-adjusted, benchmarked reporting and quality management (p. 1) and uses a patients functional status to predict outcomes (FOTO, 2019). FOTOs Elbow, Wrist, Hand Functional Status 10-Item Short Form (EWHFS) was created specifically for patients with conditions or injuries of the upper extremity (FOTO, n.d.). While the EWHFS does not have reported psychometric properties, it was adapted from the Disabilities of the Arm, Shoulder, Hand questionnaire (DASH) and the Upper Extremity Functional Index (UEFI), two outcome measures commonly used in upper extremity THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 7 rehabilitation (FOTO, 2018). Both patient-reported outcome measures are valid and reliable (Raven et al., 2008; Solway, Beaton, McConnell, & Bombardier, 2002) tools to assess symptoms and upper extremity function with daily tasks (Chesworth et al., 2014; Franchignoni, et al., 2014; Gummesson, Atroshi, & Ekdahl, 2003). Some items that patients are asked to rate their ability on include tying or lacing shoes and opening a jar (Hamilton & Chesworth, 2013, p.1513). Additionally, the DASH has been used to determine significant changes in patients occupational performance following OT services (Case-Smith, 2003). Using the CAT delivery method, FOTO asks relevant questions to each patient depending on the stated disability and displays questions about varying levels of difficulty completing tasks (Hart, Deutscher, Werneke, Holder, & Wang, 2010). For example, patients may be asked if they experience difficulty when gripping or opening a can or turning a key; the next question will then be specifically selected based on the clients previous response to capture their current specific level of function (FOTO, 2019). According to Hart (2001), the measures included in FOTO generally have internal consistency, construct validity, and are responsive to changes in health and functional abilities, though research is limited on FOTOs upper extremity measures. Additionally, FOTO provides patients and insurers with the ability to compare and contrast the services of different rehabilitation clinicians, clinics, and organizations (FOTO, 2019). Hart and Connolly (2006) found that FOTO data reduced reimbursement for lowperforming companies by 12% and financial incentives were used to promote better patient care outcomes. According to the researchers, patients who received care based on the pay-forperformance model had a more significant change in their functional status than those receiving traditional fee-for-service care (Hart & Connolly, 2006). Pay-for-performance promoted significant change in functional status because it held the therapist accountable for the factors THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 8 they have control over during their therapy session to promote patient satisfaction (Hart & Connolly, 2006). Patient Satisfaction According to CMS (2015), it is important for healthcare providers to collect and interpret data that relates to patient satisfaction. Junewicz and Youngner (2015) stated three different factors were present that influenced patient satisfaction: necessary medical care that the patient received, medically unnecessary interventions the family or patients requested that could negatively impact functional outcomes, and factors related to soft skills and the environment. These environmental factors included the communication style of the healthcare provider, the design of the parking lot, the quality of the hospital gowns, and/or the design of the facilitys lobby (Junewicz & Youngner, 2015). Al-Abri and Al-Balushi (2014) concluded that a physicians communication style was the most important factor in patient satisfaction. Angerud, Boman, Ekman, and Brannstorm (2017) explained that the patients experience of and satisfaction with care is used as indicators of quality (p. 831). Based on the literature, patient education was found to be one of the leading factors in patient satisfaction (Junewicz & Youngner, 2015; Suurmeijer et al., 2005). When a healthcare practitioner educated the patient and their family on what to expect following discharge, it reduced the development of depression and anxiety (Suurmeijer et al., 2005). Additionally, a family that received education felt more prepared and in a better mental state at the time of discharge and was more satisfied with their therapy services (Suurmeijer et al., 2005). Glowacki (2015) concurred that education about pain management increased patient satisfaction and stated that when patients were able to manage their signs and symptoms, their level of satisfaction improved. THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 9 Additionally, patient satisfaction can be impacted by expectations of treatment services, health status, personal characteristics, and the characteristics of the healthcare system (Hsieh & Kagle, 1991). According to Graham, Green, James, Katz, and Swiontkowski (2015), the relationship among patients, caregivers, treatment settings, and any variety of additional components may sway a patients level of satisfaction with their provided care. The resulting data could be used to improve customer service and therefore increase the likelihood of retaining patients and increasing reimbursement (Graham et al., 2015). Graham et al. (2015) also noted that when patient satisfaction data was used to improve overall processes and outcomes, the number of patient lawsuits was reduced. Therefore, it is important for healthcare providers to collect and interpret data that relates to patient satisfaction. One tool that researchers have used to collect this data is the NRCHRT (NRC Health, n.d.). NRC Health Real-time The NRCHRT satisfaction tool is used to collect data on a patients overall satisfaction with their care and allow organizations and healthcare providers to understand what is most important to their patients (Co et al., 2011). The NRCHRT demonstrates good criterion-related validity, with high correlation between the dimensions of care assessed and overall satisfaction, as well as, to whether or not the patient recommended the hospital to their family or friends (Co et al., 2011, p. S64). Additionally, the tool has appropriate internal consistency and reliability to capture patient satisfaction (Co et al., 2011). Historically, healthcare systems categorize NRCHRT client responses based on the rating given to the question How likely would you be to recommend this facility to your family and friends? (Krol, De Boer, Delnoij, & Rademakers, 2014, p. 3100). To determine the Net Promoter Score (NPS), clients answer this question on a scale of 0-10 with zero being not at all THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 10 likely and ten being extremely likely (Graham & Maccormick, 2012; Krol et al., 2014). Clients are considered promoters if they answer with nine or ten, passives if they answer with seven or eight, and detractors if they answer with zero through six (Krol et al., 2014). The Relationship Between Patient Satisfaction and Functional Outcomes Patient satisfaction and functional outcomes are important to consider as they relate to the quality of healthcare, but especially since providers must report this data to receive Medicare B reimbursement (QPP, 2019a). For decades, patient satisfaction has been acknowledged by researchers and healthcare professionals as a predictor of a patients willingness to fully participate in treatment services; as such, this may affect the patients overall functional outcome (Pefoyo & Wodchis, 2013). Past researchers sought to find correlations between general satisfaction and functional outcome measures, but no results were statistically significant (Pekarik & Guidry, 1999). More recently, however, Schrier et al. (2019) analyzed patient satisfaction and clinical outcomes among patients who underwent carpal tunnel release surgery. Researchers used the Boston Carpal Tunnel Assessment Questionnaire as an outcome measure to determine symptoms and functional status and compared these results with patient-reported experiences (Schrier et al., 2019). Schrier et al. (2019) found that the greatest impact on patient reported-experiences was physician communication and treatment information. In another study, Custer et al. (2015) utilized the Functional Independence Measure (FIM) and found that patients who scored higher on the FIM at discharge and were more independent with functional tasks, were more likely to express satisfaction about clinical quality and client-centeredness subscales. In another study, Tsehaie et al. (2019) aimed to investigate the association between patients' experiences with trapeziometacarpal arthroplasty and treatment outcomes in terms of patient-reported outcome THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 11 measures, grip and pinch strength (p.714). The researchers utilized the Michigan Hand Outcomes Questionnaire and pinch and grip strength measurements to determine functional outcome status (Tsehaie et al., 2019). By using regression analysis, researchers found significant positive associations between the Michigan Hand Questionnaire and patient-reported experience measures (Tsehaie et al., 2019). Additional researchers have focused on the relationships between the quality of service, satisfaction, and treatment effectiveness and found satisfaction had a statistically significant (p < .05) effect on the patients functional outcome (Kim et al., 2017). Researchers have focused heavily on functional change as related to the level of satisfaction using a variety of different tools, but not with the popular FOTO or NRCHRT. Additionally, research conducted on the relationships between patient satisfaction and functional outcomes among patients receiving outpatient OT for upper extremity rehabilitation is limited. Therefore, the purpose of this study was to investigate potential relationships between outpatient OT patients FOTO change scores and NRCHRT responses to better examine links between functional change and patient satisfaction. 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 possible relationships between FOTO scores and NRCHRT responses. Researchers analyzed retrospective data from patients treated between November 2017 through March 2019 at a large hospital-based outpatient therapy department located in the Midwest to determine if initial satisfaction scores impacted overall THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 12 functional change. FOTO and NRCHRT data used in the study were previously collected for normal operating procedures at the facility; therefore, no participants were recruited, screened, or randomized, so informed consent was not necessary to obtain. Both tools have been used for many years at this facility for management, leadership, development, marketing, and reimbursement purposes. NRCHRT NRCHRT was used to measure the patient experience and satisfaction of care. At this facility, the NRCHRT survey was sent to patients through text messaging the same day as their initial evaluation. Patients were asked ten questions about their experience at the therapy clinic and answered questions based on a Likert scale (no; yes, somewhat; yes, mostly; or yes, definitely) or rating scale (zero through ten). Patients were also asked the question How likely would you be to recommend this facility to your family and friends? (Krol et al., 2014, p. 3100) and answered on a scale of zero through ten, with zero being not at all likely and ten being extremely likely (Krol et al., 2014). Based on their responses, patients were grouped into one of three categories: promoters if they answered with a nine or ten, passives if they answered with a seven or eight, and detractors if they answered with zero through six (Krol et al., 2014). FOTO FOTO was used to measure a patients functional change from their initial therapy visit to discharge. The FOTO intake survey was given to clients when they arrived for their therapy evaluation by front office staff. Patients completed the initial FOTO on a tablet in the waiting room before meeting their therapist. The FOTO discharge survey was given to patients by their therapist on the final day of the therapy episode using either a tablet or computer, dependent on clinic set-up. Patient responses to FOTO were collected via a survey using CAT processes to THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 13 determine patient demographics and self-perceived functional status (FOTO, 2019). FOTO delivers relevant questions to each patient depending on the stated disability and displays questions about difficulty completing tasks (Hart et al., 2010). For example, on the Hand or Wrist FOTO assessments, patients are asked if they experience difficulty when gripping or opening a can or turning a key (FOTO, 2019). The design of the CAT process is to provide questions in varying order to specifically determine the level of functional impairment (Hart et al., 2010). Participants and Data Collection Participants of the study previously received outpatient OT services for hand, wrist, elbow, or upper arm injuries and completed the NRCHRT on the day of their evaluation. To meet inclusion criteria, participants were 18 years or older and completed FOTO at therapy evaluation and discharge. Exclusion criteria consisted of patients with incomplete NRCHRT, those not seen by OT hand therapists, or those who did not have a hand, wrist, elbow, or upper arm orthopedic impairment. In order to maintain patient and clinician privacy, a qualified hospital employee not associated with the research team paired FOTO and NRCHRT data for each participant. Once the data pairing was completed, the hospital employee removed all patient and clinician identifiers from the encrypted spreadsheet to provide the researchers with coded and deidentified data. Data Analysis Researchers received data from 1259 total participants. Upon preliminary analysis of the data, researchers removed 41.9% (n = 528) of participants who had incomplete FOTO scores. Additionally, researchers excluded 2.9% (n = 37) of participants who had a non-orthopedic THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 14 injury and 7.1% (n = 89) of participants who did not respond to the NPS question on the NRCHRT. Therefore, researchers analyzed a total of 649 participants. Researchers conducted the preliminary analysis multiple times to ensure the accuracy of the final sample. 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 score and the intake score. Because of this, 6% (n = 40) of participants had negative FOTO change scores as their functional status worsened over the course of therapy. Researchers then set to determine if FOTO change scores were statistically significant and if there was a statistically significant difference in change scores between groups. Results Researchers ran descriptive statistics on FOTO functional change scores. Eleven outliers that were more than 1.5 box-lengths from the edge of the box in a boxplot were detected. The outliers were true measurements not due to error and were therefore kept for analysis. The Shapiro-Wilks test (p < .001) assessed that FOTO change scores were not normally distributed. Upon further analysis, 598 participants (92%) had functional improvement according to FOTO, 40 participants (6%) had a decline in functional improvement, and 11 participants (2%) had no functional change. A Wilcoxon signed-rank test was conducted to determine the effect of outpatient OT on functional change. FOTO change scores for all groups were approximately symmetrically distributed, as assessed by visual inspection of a boxplot. There was a statistically significant improvement in functional change (Mdn = 20 points) as measured by FOTO following therapy, z = 20.98, p < .001. THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 15 To determine if FOTO change scores differed based on initial satisfaction scores, researchers categorized participants into three distinct groups based on data output from the NRCHRT database. Researchers had to recode net promoter data from the question, How likely would you be to recommend this facility to your family and friends? (Krol et al., 2014, p. 3100) to change the computer-generated numbers to match the conventional scoring used in the rating scale (0-10). A Kruskal-Wallis H test was conducted to determine if there were differences in FOTO change scores between the three groups of participants with different satisfaction ratings: the promoters (n = 591, Mdn = 21 points), the passives (n = 36, Mdn = 19 points), and the detractors (n = 22, Mdn = 14.50 points). Distributions of FOTO change scores were similar for all groups as assessed by visual inspection of a boxplot. Median FOTO change scores were not statistically significantly different between groups, 2(2) = 1.158, p = .560. Due to the large difference in the number of participants in the promoter group compared to the other two groups, researchers repeated the statistical analysis using a similarly sized promoter group to ensure accuracy. Thirty-eight randomized participants were selected from the original promoter group of 591 participants using the random number generator from Microsoft Excel. Researchers ran the Kruskal-Wallis H test again to determine if there were statistical differences in FOTO change scores using the smaller promoter group (new Mdn = 22.5 points). Again, median FOTO change scores were not statistically significantly different between groups, 2(2) = 3.088, p = .214. To further explore the data, researchers ran a Mann-Whitney U test to determine if there were differences in change scores only between the promoter group, using the randomized pool (n = 38), and the detractor group (n = 22). Distributions of change scores for both groups were not similar, as assessed by visual inspection. Change scores for promoters (mean rank = 33.14) THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 16 and detractors (mean rank = 25.93) were not statistically significantly different, U = 317.5; z = 1.543; p = .123. Discussion In this study, researchers aimed to investigate potential relationships between outpatient OT patients FOTO functional change scores and NRCHRT responses to better examine links between functional change and patient satisfaction. Several researchers have already conducted multiple studies examining the links between functional status and overall satisfaction with healthcare services (Custer et al., 2015; Hart & Wright, 2002; Mller et al., 2020; Pekarik & Guidry, 1999; Schrier et al., 2019). Researchers found patient satisfaction was higher in patients with significant improvement in physical ability, pain relief, and self-care (Imhoff, Feucht, Bartsch, Cotic, & Pogorzelski, 2018; Ray, Ekelund, Nemes, Rolfson, & Mohaddes, 2019). Researchers also found that patient satisfaction was partially dependent on treatment effectiveness more than interpersonal-based medical service encounters, such as the therapy environment (Kim et al., 2017). In another study, functional outcomes were greatly associated with overall patient satisfaction (Lizaur-Utrilla, Miralles-Munoz, Gonzalez-Parreno, & LopezPrats, 2019). Glasgow, Cox, Laracy, Green, and Ross (2019) explained that while upper extremity rehabilitation did not necessarily restore the patients condition entirely in all cases, it often led to a reduction in pain and greater patient satisfaction and therefore led to a greater chance of functional improvement. Not only was patient satisfaction able to predict better treatment outcomes, but it was also able to predict a higher-rated quality of life and better physical and mental health (Mller et al., 2020). Krol et al. (2014), concluded that there was a moderate to strong correlation between NPS, global ratings, recommendation questions, and overall patient experience scores. THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 17 Considering all the evidence, it can be concluded that an increase in functional change is related to satisfaction because there is marked improvement in the functionality and overall health of patients. Although differences in functional outcome scores between net promoter groups were not statistically significant in our study, those in the promoter group did have higher scores than those in the passive group or the detractor group. Therefore, we determined a clinically significant difference in FOTO change scores between the promoter group (Mdn = 21 points) and the detractor group (Mdn = 14.50 points) as a 21 point change in function is much greater than a 14.50 point change. It should also be noted that the median change in functional status for all participants (n = 649) was 20 points. FOTO researchers have defined functional change as a change in only six to 12 points (Resnik & Hart, 2003; Wang, Hart, Cook, & Mioduski, 2010; Wang, Hart, Stratford, & Mioduski, 2009; Wang, Hart, Stratford, & Mioduski, 2011); therefore, participants in our study had a greater level of functional change with OT services. Current OT practitioners should understand that while there were no significant correlations between satisfaction scores and functional outcome scores in our study, the differences were clinically relevant. Because of this, OT practitioners should aim not only to improve their clients physical condition but ensure they are satisfied with their experience as well. Limitations and Implications for Future Practice A few limitations exist for our study. Upon reviewing the relevant literature, the researchers were unable to locate any information stating that FOTO was reliable or valid by anyone other than employees of FOTO. Therefore, FOTO should be validated by other sources, or a more thoroughly researched outcome measure should be used to determine functional change. Additionally, data was only collected from patients with musculoskeletal conditions of THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 18 the upper extremity; therefore, the findings of this study are not generalizable to other patient populations within the profession. The researchers recommend further data collection from a variety of patient populations to ensure that the findings are more applicable in all OT settings. The researchers' use of NRCHRT to measure satisfaction also limited the conclusions that can be made from the study. Our participants NRCHRT scores were only collected after the initial evaluation; therefore, the scores did not enable a complete view of the patients entire therapy experience. Also, researchers used groupings of patient satisfaction consistent with the literature and regarded those with NPS of nine and ten as promoters. Because the groups were not evenly categorized, this may have led to skewed results. The researchers recommend future studies more thoroughly investigate responses given on the NRCHRT. Conclusion In conclusion, researchers did not find statistically significant relationships between outpatient OT patients FOTO change scores and NRCHRT responses when examining links between functional change and patient satisfaction. However, clinically significant differences were present. Researchers recommend further exploration of patient satisfaction and functional change with therapy services as reimbursement continues to change. As always, OT practitioners need to be aware of such policies and procedures regarding reimbursement and continue to strive towards best practice to ensure satisfaction and functional improvement in their patients. THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 19 References Al-Abri, R., & Al-Balushi, A. (2014). Patient satisfaction survey as a tool towards quality improvement. Oman Medical Journal, 29(1), 3-7. doi:10.5001/omj.2014.02 ngerud, K. 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Pay-for-performance for physical therapy and occupational therapy: Medicare Part B services, (Grant No.18-P-93066/9-01). Knoxville, TN: Focus On Therapeutic Outcomes, Inc. Hart, D. L., Deutscher, D., Werneke, M. W., Holder, J., & Wang, Y. (2010). Implementing computerized adaptive tests in routine clinical practice: Experience implementing CATs. Journal of Applied Measurement, 11(3), 288-303. Hart, D. L., & Wright, B. D. (2002). Development of an index of physical functional health status in rehabilitation. Archives of Physical Medicine and Rehabilitation, 83(5), 655665. THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 22 Hsieh, M. O., & Kagle, J. D. (1991). Understanding patient satisfaction and dissatisfaction with health care. Health & Social Work, 16(4), 281-290. Imhoff, A. B., Feucht, M. J., Bartsch, E., Cotic, M., & Pogorzelski, J. (2019). High patient satisfaction with significant improvement in knee function and pain relief after mid-term follow-up in patients with isolated patellofemoral inlay arthroplasty. Knee Surgery, Sports Traumatology, Arthroscopy, 27(7), 22512258. https://doi.org/10.1007/s00167018-5173-2 Junewicz, A., & Youngner, S. J. (2015). Patient-satisfaction surveys on a scale of 0 to 10: Improving health care, or leading it astray? Hastings Center Report, 45(3), 4351. doi: 10.1002/hast.453 Kim, C. E., Shin, J., Lee, J., Lee, Y. J., Kim, M., Choi, Ha, I. (2017). Quality of medical service, patient satisfaction and loyalty with a focus on interpersonal-based medical service encounters and treatment effectiveness: A cross-sectional multicenter study of complementary and alternative medicine (CAM) hospitals. BMC Complementary and Alternative Medicine, 17(174). doi:10.1186/s12906-017-1691-6 Krol, M. W., De Boer, D., Delnoij, D. M., & Rademakers, J. D. J. M. (2014). 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(2003). Using clinical outcomes to identify expert physical therapists. Physical Therapy , 83(11), 9901002. doi: https://doi.org/10.1093/ptj/83.11.990 THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION 25 Schrier, V. J. M. M., Poelstra, R., Selles, R. W., Slijper, H. P., Amadio, P. C., Hovius, E. E. R., Porsius, J. T. (2019). Better patient-reported experiences with health care are associated with improved clinical outcome after carpal tunnel release surgery. Plastic and Reconstructive Surgery, 143(6), 1677-1684. doi: 10.1097/PRS.0000000000005516 Solway, S., Beaton, D. E., McConnell, S., & Bombardier, C. (2002). The DASH outcome measure users manual (2nd ed.). Toronto: Institute for Work & Health. Suurmeijer, TH. P. B. M., Van Sonderen, F. L. P., Krol, B., Doeglas, D. M., Van Den Heuvel W. J. A., & Sanderman, R. (2005). The relationship between personality, supportive transactions and support satisfaction, and mental health of patients with early rheumatoid arthritis: Results from the Dutch part of the euridiss study. Social Indicators Research, 73, 179-197. doi:10.1007/s11205-004-0562-y Tsehaie, J., Van Der Oest, M. J. W., Poelstra, R., Selles, R. W., Feitz, R., Slijper, H. P., Hovius, S. E. R., Porsius, J. T. (2019). Positive experience with treatment is associated with better surgical outcome in trapeziometacarpal osteoarthritis. Journal of Hand Surgery, 44(7), 714-721. doi: 10.1177/1753193419851777 Wang, Y.-C., Hart, D. L., Cook, K. F., & Mioduski, J. E. (2010). Translating shoulder computerized adaptive testing generated outcome measures into clinical practice. Journal of Hand Therapy, 23(4), 372383. doi: 10.1016/j.jht.2010.06.001 Wang, Y.-C., Hart, D. L., Stratford, P. W., & Mioduski, J. E. (2009). Clinical interpretation of computerized adaptive test outcome measures in patients with foot/ankle impairments. Journal of Orthopaedic & Sports Physical Therapy, 39(10), 753-764. doi:10.2519/jospt.2009.3122 THE RELATIONSHIP BETWEEN SATISFACTION AND FUNCTION Wang, Y.-C., Hart, D. L., Stratford, P. W., & Mioduski, J. E. (2011). Baseline dependency of minimal clinically important improvement. Physical Therapy, 91(5), 675-688. doi: 10.2522/ptj.20100229 Signature: Email: petersonek@uindy.edu Signature: Email: decleenek@uindy.edu Signature: Alison Nichols (Dec 11, 2020 13:51 EST) Email: anichols@uindy.edu 26 Peterson OTD 21 FINAL MANUSCRIPT 12.3.20 Final Audit Report 2020-12-11 Created: 2020-12-11 By: Kristin Arnes (arnesk@uindy.edu) Status: Signed Transaction ID: CBJCHBCAABAACW-txrGYZJIX5H8-xx7FBdu-7ipEf3AS "Peterson OTD 21 FINAL MANUSCRIPT 12.3.20" History Document created by Kristin Arnes (arnesk@uindy.edu) 2020-12-11 - 0:00:47 AM GMT- IP address: 69.174.160.116 Document emailed to Erin Peterson (petersonek@uindy.edu) for signature 2020-12-11 - 0:02:27 AM GMT Email viewed by Erin Peterson (petersonek@uindy.edu) 2020-12-11 - 4:27:48 PM GMT- IP address: 66.249.80.114 Document e-signed by Erin Peterson (petersonek@uindy.edu) Signature Date: 2020-12-11 - 4:28:15 PM GMT - Time Source: server- IP address: 71.135.195.243 Document emailed to Alison Nichols (anichols@uindy.edu) for signature 2020-12-11 - 4:28:16 PM GMT Email viewed by Alison Nichols (anichols@uindy.edu) 2020-12-11 - 6:50:34 PM GMT- IP address: 174.221.5.172 Document e-signed by Alison Nichols (anichols@uindy.edu) Signature Date: 2020-12-11 - 6:51:02 PM GMT - Time Source: server- IP address: 174.221.5.172 Document emailed to Kate DeCleene Huber (decleenek@uindy.edu) for signature 2020-12-11 - 6:51:03 PM GMT Email viewed by Kate DeCleene Huber (decleenek@uindy.edu) 2020-12-11 - 7:06:28 PM GMT- IP address: 69.108.47.154 Document e-signed by Kate DeCleene Huber (decleenek@uindy.edu) Signature Date: 2020-12-11 - 7:38:36 PM GMT - Time Source: server- IP address: 69.108.47.154 Agreement completed. 2020-12-11 - 7:38:36 PM GMT  ...

... ISSUES OF PROFESSIONALISM IN NEW OTS Issues of Professionalism in New Occupational Therapists Paige McIntire Hannah Hackman Kristen Dyson Angella Chen Erika Wilson December 2020 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. Taylor McGann, Assistant Professor Dr. Kate E., DeCleene Huber, Associate Professor 1 ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS A Research Project Entitled Issues of Professionalism in New Occupational Therapist Submitted to the School of Occupational Therapy at the University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Paige McIntire Hannah Hackman Kristen Dyson Angella Chen Erika Wilson Student Approved by: Taylor McGann Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Doctor of Occupational Therapy Program Director: Alison Nichols OTD Program Director Dec 14, 2020 Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate DeCleene Huber Chair, School of Occupational Therapy Dec 14, 2020 Date 2 ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 3 Abstract Literature: Professionalism in occupational therapy has been challenging to identify due to differing values and behaviors across contexts and professions (Aguilar et al., 2012; Mazor et al., 2007; Robinson et al., 2012; Stickley et al., 2017; Sullivan & Thiessen, 2015). There is a difference between how occupational therapy students and faculty both view and comprehend professionalism (Robinson et al., 2012; Sullivan & Thiessen, 2015), suggesting that new occupational therapists do not have an established sense of professionalism when entering into the health care field for the first time. Purpose: The purpose of the study was to examine occupational therapy facultys perceptions of essential professional behavior attributes that students should possess to be successful in entrylevel occupational therapy practice. Methods: This study utilized survey methodology to anonymously collect opinions from 150 occupational therapy faculty members across the United States regarding professional behavior attributes that are essential for entry-level occupational therapy education. Results: Researchers found that the five most frequently observed professional behavior attributes in occupational therapy students were team player, responsible, time-efficient, personable, and organized. Furthermore, the top seven most important professional behavior attributes are being clinically competent and ethical, having communication and interpersonal skills, and being adaptable, responsible, and empathetic. Conclusion: The results of this study indicate that occupational therapy faculty believe that many important attributes contribute to professionalism within the occupational therapy field and that teaching professionalism is an integral part of occupational therapy education. This study contributes to the current literature of defining professionalism within occupational therapy to better equip occupational therapy students entering into practice. Keywords: occupational therapy, professionalism, faculty perceptions, students, attributes, behavior ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 4 Issues of Professionalism in New Occupational Therapists Professionalism is a vast phenomenon, differing in definition by profession (Mazor et al., 2007; Robinson et al., 2012; Stickley et al., 2017; Sullivan, & Thiessen, 2015; Zafiropoulos, 2017). Defining professionalism is difficult secondary to varying values across professions (Gauger et al., 2004; Koenig et al., 2003; Mason & Mathieson, 2018). Although professionalism is vital in all disciplines, it is an essential element in the health care field as several researchers have found that professionalism directly relates to patient outcomes (Aguilar et al., 2012; Robinson et al., 2012; Sullivan & Thiessen, 2015). Professions frequently reference the American Board of Internal Medicine (ABIM, 2001) definition which states that the essential elements of professionalism include accountability, altruism, duty, excellence, honor, integrity, respect for others, and service (Blackall et al., 2007; DeLisa et al., 2001; Noronha et al., 2016; Shrank et al., 2004). Students in health care fields often struggle with understanding the meaning of professionalism due to its subjective nature of know(ing) it when they see it (Gauger et al., 2004, p. 479). Professional behaviors are challenging to learn, teach, and evaluate despite the significance to professional practice (Hackenberg & Toth-Cohen, 2018; Hodges et al., 2011; Robinson et al., 2012; Stickley et al., 2017). These difficulties correlate with several unsuccessful attempts to establish and validate a tool to assess professionalism (DeLisa et al., 2001; Yuen et al., 2016). Professionalism may vary over time (Hammer et al., 2000; Hodges et al., 2011), across contexts and environments (Aguilar et al., 2012; Burford et al., 2014; Chandratilake et al., 2012; Hodges et al., 2011; Hultman & Wagner, 2015; Jha et al., 2015; Robinson et al., 2012), as well as with different populations (Noronha et al., 2016; Sullivan & Thiessen, 2015). The subjectivity that surrounds professionalism relates to the need for ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 5 practicing occupational therapists to identify professional behavior attributes required of occupational therapy students and new graduates to best help them succeed in professional practice and generate positive patient outcomes. Researchers created this study to identify and understand what professional behavior attributes occupational therapy (OT) faculty deem as essential for entry-level occupational therapy practitioners in professional practice. Literature Review Defining Professionalism Clinical practice requires professionalism to be successful, but what constitutes professionalism can often be vague and difficult to establish (Stickley et al., 2017). In recent years, there has been increased attention in defining professionalism (Brissette et al., 2017; Robinson et al., 2012; Shrank et al., 2004), to clarify its meaning across contexts. Advances in technology, changes in delivery and reimbursement of health care, an explosion of information in the health care field, and an increasingly complex environment have all contributed to the increase of attention on professionalism (Green et al., 2009; Thistlethwaite & Spencer, 2008), as each of these has impacted how health care professionals carry out their jobs. Nortje (2017) stated that these changes in health care delivery threaten both the nature and value of professionalism, as well as frustrate current health care professionals. This threat stems from an increasingly complex health care system where practitioners must uphold the principles of patients welfare, patients autonomy, and social justice despite increasing numbers of disparities and limited resources that tempt practitioners to abandon their commitment to their professional values (Medical Professionalism Project, 2002). Professionalism includes things such as professional identity, and professional behaviors exhibited both at and away from work. Klemenc-Ketis and Vrecko (2014) stated that ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 6 professionalism includes attitudes, values, behaviors, and relationships that hold a health professional responsible in their society. It has been noted as one of the most important topics to learn in the health care field (Klemenc-Ketis & Vrecko, 2014; Taibah, 2018). Aguilar et al. (2012) defined professionalism in two ways: a behavioral perspective and a values perspective (Gauger et al., 2005; Sullivan & Thiessen, 2015). When defining the concept from a behavioral perspective, professionalism is the demonstration of the professional behaviors desired by that occupation, which does not account for the intrinsic factors that lead individuals to act in the ways that they do (Hammer et al., 2003). Professional behaviors are independent of the core knowledge and expertise that one has in his/her field of practice, meaning that individuals must learn these behaviors over time (Stickley et al., 2017). Defining professionalism from a values perspective shifts the focus from observable behaviors to the values that can guide and motivate practitioners, as well as unite a profession as a whole (Duque, 2004; Kanny, 1993). Social, cultural, political, and institutional environments shape these values, which go beyond observed behaviors (Martimianakis et al., 2009). These values must be explicitly stated for each profession as they enable practitioners to align their values with those of their profession (Byng et al., 2002), shape future practice (Aguilar et al., 2012), allow identification of conflicts that can occur between professions (Colombo et al., 2003), and clarify what it means to be a professional within each practice area (Aguilar et al., 2012). Although common, definitions based upon a list of proposed professional attributes, values, and behaviors do not adequately define professionalism, nor do they capture the social functions of the phenomenon (Wynia et al., 2014). Defining professionalism as a list of attributes, values, and behaviors suggests that individuals can obtain professionalism so long as they demonstrate the desired traits (Wynia et al., 2014). To address this issue, Wynia et al. ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 7 (2014) defined professionalism as, a normative belief system about how best to organize and deliver health care (p. 3), stating that it should ensure practitioners are deserving of the trust that their patients and the public place on them. List-based definitions are beneficial nonetheless, as professionalism requires specific behaviors (Wynia et al., 2014). Additionally, list-based definitions enable for a more functional way of teaching and measuring professionalism (Wynia et al., 2014) but should not be an exclusive method for defining professionalism (Wynia et al., 2014). Professionalism in Context In addition to the definition from Klemenc-Ketis & Vrecko (2014), The ABIM (2001) set forth a description of professionalism, stating that the phenomenon includes elements of accountability, altruism, duty, excellence, honor, integrity, respect for others, and service. To demonstrate professionalism in their work, practitioners must see these elements as both behaviors and values that they must uphold. Multiple researchers have used this definition since debuting in the late 20th century (Chisholm et al., 2006; DeLisa et al., 2001; Noronha et al., 2016). Noronha et al. (2016) used this definition to examine the similarities and differences of professionalism across physician assistants, physical therapists, occupational therapists, clinical psychologists, and biomedical sciences students finding that different disciplines emphasize different parts of the ABIM (2001). DeLisa et al. (2001) also used the ABIM definition of professionalism when surveying professional behaviors and values in physiatry students, finding that excellence, altruism/respect, and honor/integrity were the most commonly observed elements. Furthermore, Chisholm et al. (2006) found that six of the nine attributes established by the ABIM (2001) to be important to professionalism in pharmacy students. ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 8 Each discipline defines professional behaviors in their terms, which can complicate the perception of professional behaviors in health care (Stickley et al., 2017). Nursing defines professional behaviors as accountability, advocacy, autonomy, collaborative practice, commitment, competence, and knowledge (Stickley et al., 2017). This definition varies from the definition set forth by the American Occupational Therapy Association (AOTA), which identifies professional behaviors for occupational therapists as altruism, equality, freedom, justice, dignity, truth, and prudence (AOTA, 2015). Furthermore, physicians define professional behaviors to be awareness of their limitations, compassion, empathy, respectful/collaborative interactions with professional colleagues, and respect for patient dignity (Stickley et al., 2017). Lastly, Jette and Portney (2003) found that physical therapists should demonstrate seven main professional behaviors in practice. These behaviors include communication management, critical thinking, interpersonal skills, personal balance, professional development, professionalism, and working relationships (Jette & Portney, 2003; Stickley et al., 2017). Many of these definitions include aspects of communication, compassion, and autonomy, but no two definitions are the same. The issue with these varying definitions is in the way each practitioner understands and practices the professional behaviors defined by their profession (Zafiropoulos, 2017). These studies further show that the definition of professionalism, including values and beliefs, needs to be explicitly stated within each health care profession (Aguilar et al., 2012). Not only does the definition of professionalism differ by profession (Jette & Portney, 2003; Noronha et al., 2016; Stickley et al., 2017; Zafiropoulos, 2017), it also differs by context, because cultural background significantly influences how an individual perceives professionalism (Chandratilake et al., 2012). Chandratilake et al. (2012) found altruism to be highly important to Asian practitioners, moderately important to North American practitioners, ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 9 and unimportant to UK practitioners. The North American multicultural society is the only culture in the study by Chandratilake et al. (2012) that values being culturally sensitive to others. According to Nortje (2017), being culturally sensitive is important, as crossing cultural boundaries can make a patient feel disrespected or treated unprofessionally. Lastly, Chandratilake et al. (2012) found that Asian practitioners value discipline much more than European and North American practitioners. Core values of professionalism in South Africa differ as well, with the Health Professionals Council of South Africa defining 13 essential values (Nortje, 2017). These include respect for persons, beneficence, non-maleficence, human rights, autonomy, integrity, truthfulness, confidentiality, compassion, tolerance, justice, professional competence, self-improvement, and community (Nortje, 2017). Despite these differences in professional values, individuals of all cultures examined agreed on some essential values that must be present to be considered professional (Chandratilake et al., 2012). Some of these include being accountable for ones actions, being reliable and dependable, showing compassion, treating patients and colleagues fairly, following the laws, and communicating clearly and effectively with others (Chandratilake et al., 2012; Nortje, 2017). Values such as personal appearance, leadership, health, and composure were not deemed essential by any of the cultures examined (Chandratilake et al., 2012). Each culture represents its own set of values and beliefs that are essential to their definition of professionalism in that geographical region (Jha et al., 2015) which further complicates the construct. This additional complication leads to difficulty in understanding what values and beliefs must be present to be considered professional in the health care system. This complication exists in both a global and a local context, which further emphasizes the demand to ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 10 study professionalism in health care in the context of cross-cultural beliefs, values, and attitudes (Latif et al., 2018). It is also important to consider generational differences in the definition of professionalism as behavior is shaped by events and social conditions that each generation experiences throughout life (Hills et al., 2012; Hills et al., 2016; Noonan et al., 2019). Hills et al. (2012) called these differences generational characteristics. Each generation has its own set of generational characteristics, including beliefs, values, attitudes, and expectations (Hills et al., 2016), which have the potential to cause differences in definitions of professionalism. Noonan et al. (2019) found differences in communication style and values between Baby Boomers, Generation X, and Millennial physical therapists, stating that Millennials value more frequent feedback, open communication with their supervisors, and working in teams. This difference in Millennials is supported by Hills et al. (2016), who stated that this generation is more techno-savvy and overconfident. This form of communication is often seen by other generations as unprofessional (Hills et al., 2016) and may cause conflict or a misunderstanding within the workplace (Noonan, et al., 2019). Millennials also value respect more than other generations who place more value on trust and dependability (Hoonpongsimanont et al., 2018). Hoonpongsimanont et al. (2018) found that Generation X health care workers also value respect but view it differently than Millennials. Along with respect for patients, participants from both the Millennial group and Generation X group placed a high value on being trustworthy, dependable, and compassionate towards their patients (Hoonpongsimanont et al., 2018). In a separate study by Noonan et al., (2019) physical therapists from all three generations agreed that communication skills and interpersonal skills were the top two abilities relating to professionalism. All three generations ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 11 also ranked critical thinking and problem solving as important for professionalism within practice (Noonan et al., 2019). These results suggest that professional values are more important than differences in generational characteristics as there were no significant differences in ranking of the previously mentioned abilities related to professionalism by generation or years of work experience (Noonan et al., 2019). Despite differences in generational characteristics, research on age and years of experience does not suggest that these translate into significant differences in definitions of professionalism. Learning and Teaching Professionalism Although significant, the various beliefs and values that researchers use to define professionalism are challenging to learn, teach, and evaluate (Hackenberg & Toth-Cohen, 2018; Hodges et al., 2011; Stickley et al., 2017; Robinson et al., 2012). Educators rarely teach professionalism on its own, and instead instill the concept in other subjects, without making the objective clear (Klemenc-Ketis & Vrecko, 2014). This educational technique means that students often learn about professionalism through indirect methods (Novak-Antolic & Steblovnik, 2012). Additionally, what students are learning may differ from what they are seeing or experiencing when providing direct patient care in fieldwork or on clinical rotations (Reynolds et al., 2019). Hilton (2008) stated that professionalism is best taught through role modeling of educators in clinical settings so that students can observe interactions between the educators and patients or other professionals in an applicable environment (Johnston et al., 2011). Reynolds et al. (2019) stated that role modeling can be very beneficial so long as the modeling is positive, as 93% of participants in their study reported having a role model that positively influenced their professionalism. Also, they found that more than 58% of participants in their study changed their perception of the importance of professionalism in practice after seeing a teacher act in an ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 12 unprofessional manner (Reynolds et al., 2019), further showing how important it is that a role model demonstrates proper behaviors at all times. Palis & Alszul (2019) supported this notion. They found that professionalism is learned more effectively through the influence that clinicians have on students as compared to what the students learn in the classroom, further demonstrating the need for positive role models (Palis & Alszul, 2019). Hackenberg & Toth-Cohen (2018) stated that teaching methods should include more than just role modeling and suggested including formal advisor meetings/mentoring, lectures, practice/experience opportunities, reading assignments, and small group discussions to assist with teaching professionalism (Brown et al., 2016; Cruess & Cruess, 2006; Davis 2009). Students also have difficulty with learning and understanding professionalism due to their lack of lived experiences (Birden et al., 2014). Researchers believe that practitioners could resolve this difficulty if students had an increased amount of practice or several opportunities for professional interactions before entering the professional world (Hackenberg & Toth-Cohen, 2018). Reynolds et al. (2019) found that students learned more about professionalism when seeing it demonstrated in residency programs rather than when learning about the topic in the classroom. Students are not entirely at fault, as educators feel challenged when teaching professionalism due to its complex and ever-changing definition (Birden et al., 2014). Cohen (2006) stated that to teach professionalism, the educators must address three areas: improving the selection of future professionals, improving the formal instruction of professionalism, and ensuring that the learning environment is free of unprofessional practices. Harris et al. (2018) found that professional behaviors are the least focused upon topic in educating professional students. Grus et al. (2018) stated professionalism should be taught through both didactic and experiential learning, as well as through civic engagement. Didactic ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 13 education is highly effective if educators make implicit concepts more explicit and if they help students develop interprofessional thinking and communication strategies (Grus et al., 2018). Didactic learning has been linked to greater maturity for cultural and ethical issues, humanism, and professional values (Jha et al., 2007), with experiential learning allowing for more sophisticated learning needed for optimal professional functioning (Boenink et al., 2005). According to Coulehan (2005), students should also be provided opportunities for servicelearning activities to assist them with learning the importance of community service for their role as a professional in the health care field. Educators must also be equipped to teach professionalism to their students (Grus et al., 2018; Palis & Alszul, 2019). They must have access to professional development, have a good knowledge of the elements of professionalism, and understand their role in teaching and demonstrating professionalism within their field (Grus et al., 2018). Palis & Alszul (2019) stated that it is essential to train teachers on how to teach and model professionalism to their students, also noting that it is uncommon to train educators on how to explicitly teach ethics and accountability (Steinert et al., 2005). It is essential not only to evaluate the professionalism of students but also to assess the effectiveness of the teachers who teach this vital concept (Palis & Alszul, 2019). Evaluating Professionalism Evaluation of professionalism is also challenging. Researchers have designed many measurement approaches, but there are few proposed methods and instruments that can fully evaluate an individuals level of professionalism (Ginsburg et al., 2000). This challenge stems from the concept that professionalism is a complex construct with many facets that are hard to operationalize (Grus et al., 2018). Many researchers have used the ABIM (2001) measurement ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 14 tool to measure professionalism, but this tool has not validated across all professions and it may not capture professionalism in its entirety (Chisholm et al., 2006; DeLisa et al., 2001; Noronha et al., 2016). Shrank et al. (2004) suggested that no one tool is adequate to measure the complexity of professionalism and that assessments should utilize many sources to fully capture the concept. Grus et al. (2018) suggested that each health care profession should have their own assessment tool to ensure that professionalism within that specific health care realm is adequately measured. Researchers have traditionally assessed professionalism by using the global performance rating that retrospectively rates behaviors using a numerical scale (Accreditation Council of Graduate Medical Education & American Board of Medical Specialties Joint Initiative, 2000). This method lacks direct observation and relies heavily on the raters responses, which can lead to bias (Cunnington et al., 1997). Simulated patient assessments and objective structured clinical exams (OSCEs) reduce this bias and provide a more stable assessment of professionalism (Roberts & Norman, 1990). Peer evaluation can also add value to the assessment of professionalism through evaluation and training techniques that practitioners use in health care (Shrank et al., 2004). Goldie (2013) indicated that peer assessments and OSCEs are essential in measuring professionalism, but also stated that observation from faculty members is beneficial. A combination of these assessment types could lead to a tool that accurately measures professionalism across contexts and within different health care professions. Frost et al. (2018) used the Interprofessional Professionalism Assessment (IPA) to measure professionalism, which has proven to be both reliable and valid for measuring professionalism across multiple professions and contexts. This observational tool can be used by a faculty member or preceptor to evaluate a learner or by the learner as a self-assessment (Frost et al., 2018). The IPA focuses on collaboration and teamwork, as well as an individuals ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 15 behaviors that contribute to professionalism by measuring 26 behaviors across four domains (Frost et al., 2018). These four domains are communication, respect, excellence, and altruism and caring (Frost et al., 2018), which align with elements of professionalism defined in the ABIM (2001). This tool lays the foundation for assessing interprofessional professionalism across health care practices and settings (Frost et al., 2018) but is still in the beginning stages of research meaning research will need to continue before establishing the tool as the sole tool for measuring professionalism. The Professional Assessment Tool (PAT) has proven to be reliable and valid for use with pharmacy students but may also be suitable to measure professionalism with athletic training, occupational therapy, physical therapy, physician assistant, and respiratory therapy students (Harris et al., 2018). When tested among these professions, the tool showed high levels of internal consistency for all professions and seems to address the weakness of other tools that measure professional behaviors in these health care fields, as it aligns with their respective expected professional attributes (Harris et al., 2018). Researchers found the PAT to be valid with all professions except for athletic training and respiratory therapy in its initial testing (Harris et al., 2018). Not only does this tool measure the professionalism of students, but it also measures how effective the curriculum and clinical education were in developing professionalism (Harris et al., 2018). Professionalism in Occupational Therapy The current study examines professionalism in occupational therapy specifically and, therefore, should include the existing literature on the topic. Many studies done on professionalism in occupational therapy have found that it is challenging to identify the values and behaviors of professionalism due to the differing expectations across contexts (Aguilar et al., ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 16 2012; Robinson et al., 2012; Sullivan & Thiessen, 2015). Researchers have conducted most of their studies on occupational therapy students, and how this population learns professionalism through time in the classroom and on fieldwork (Ashby et al., 2016; Hackenberg & Toth-Cohen, 2018; Robinson et al., 2012; Sullivan & Thiessen, 2015). Hackenberg & Toth-Cohen (2018) stated that occupational therapy students would benefit most from explicit education on the topic, with a specific focus on aspects such as communication, responsibility, work behaviors, and time management. They indicated that professionalism should be addressed at the beginning of the students program, and throughout the program by fieldwork placements and assessments by faculty and the students (Hackenberg & Toth-Cohen, 2018). Role models can be vital within the student population as well (Silva et al., 2019). Silva et al. (2019) found that clinical tutors believe that demonstrating empathy towards patients, having good relationships with students, and being enthusiastic about the profession of occupational therapy made them good role models for students. On the other hand, students identified good relationships with students, integrity and ethical behavior, respectful relationship with colleagues, patient management skills, a commitment to personal and professional growth, and enthusiasm for the profession of occupational therapy as qualities of a positive role model (Silva et al., 2019). Students have also stated that they lack confidence in their ability to adjust to the differing expectations of professionalism when in different contexts (Robinson et al., 2012). Lower levels of confidence could be due to a lack of experience and is not a phenomenon seen in occupational therapy faculty who have had more practice navigating unfamiliar environments (Robinson et al., 2012). Furthermore, students are ambiguous about where professionalism begins and ends (Robinson et al., 2012) as well as have difficulty identifying professionalism ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 17 when their knowledge of the topic is different than the professionalism they observe in the field. (Ashby et al., 2016). There is a difference between how occupational therapy students and faculty view and comprehend professionalism, which indicates that professionalism is an ongoing developmental process (Robinson et al., 2012; Sullivan & Thiessen, 2015). This difference suggests that new occupational therapists do not have an established sense of professionalism when entering into the health care field for the first time. Mason and Mathieson (2018) found that employers look for aspects of professionalism such as client centeredness, communication, respect, and teamwork when hiring occupational therapists. Of these behaviors, Mason and Mathieson (2018) cited communication and respect as the most important. In an additional study, Swan et al. (2019) found that communication, self-management, and critical thinking were the most important attributes that contribute to being an excellent occupational therapist in an adult acute care setting. Of these, communication was the most important (Swan et al., 2019). Sullivan and Thiessen (2015) stated that advocating for occupational therapy is also an essential aspect of professionalism, meaning that occupational therapists should foster a positive perception of their profession and demonstrate professionalism in all settings. Not only does professionalism vary by profession (Mazor et al., 2007; Robinson et al., 2012; Stickley et al., 2017; Sullivan, & Thiessen, 2015; Zafiropoulos, 2017), but it also differs within a profession based on context (Aguilar et al., 2012; Robinson et al., 2012; Sullivan & Thiessen, 2015). Occupational therapy is a demonstration of this. These differences in professionalism could lead to problems in the workplace. Increased professionalism has been linked to improved patient outcomes (Aguilar et al., 2012; Robinson et al., 2012; Sullivan & Thiessen, 2015), suggesting that a lack of professionalism could lead to lower patient outcomes ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 18 among other problems. To combat this issue, occupational therapy students must have a clear expectation of the professional behavior attributes expected of them when entering professional practice. This study seeks to identify what professional behavior attributes occupational therapy faculty deem as essential for entry-level occupational therapy practitioners so that future occupational therapists are better equipped when entering professional practice. Methods This study utilized survey methodology to anonymously collect opinions from faculty in occupational therapy programs regarding professional behavior attributes that are essential for entry-level occupational therapy education. Researchers adapted the survey from components of surveys by Campbell et al. (2015) and Davis (2009) to cover all topics on demographics adequately, and professional behavior attributes needed for the current study. Researchers adapted the structure of the survey from Davis (2009), with all references about physical therapy modified to represent the occupational therapy profession. Researchers omitted some questions from the original study by Davis (2009) due to a lack of relevance to the current research. The 22 professional behavior attributes used in the present study were borrowed from Campbell et al. (2015) to apply to academic education. Participants The participants for this study consisted of 150 individuals who are faculty in an entrylevel occupational therapy program in the United States. Researchers sent the survey out to 655 individuals, with a response rate of 22.9%. Of these participants, 146 were occupational therapists. All respondents had a minimum of a bachelors degree in their respective fields, with 124 (83%) having earned a doctorate as his or her highest level of education. Represented doctorate degrees include Doctor of Philosophy (PhD), Doctor of Education (EdD), post-professional doctorate, ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 19 post-professional doctorate in occupational therapy, entry-level Doctor of Occupational Therapy (OTD), Doctor of Physical Therapy (DPT), Doctor of Science (ScD), Juris Doctor (JD), and Doctor of Public Health (DrPH). Table 1 shows responses for the highest earned degree. Table 1 Highest level of degree earned Degree earned n Percentage Post-professional doctorate in occupational 53 35.5 PhD 45 30.0 Entry-level MOT 11 7.38 Post-professional masters 11 7.38 Post-professional doctorate 10 6.71 EdD 8 5.37 Other 7 4.70 Entry level OTD 4 2.68 therapy Note. n= Total participants with an earned level of degree. PhD = Doctor of Philosophy. MOT = Master of Occupational Therapy. EdD = Doctor of education. OTD = Doctor of Occupational Therapy Respondents between 36 to 65 years of age accounted for 78% of the sample size, with 19 participants ranging between 26 and 35 years of age and 12 participants ranging between 66 and 75 years of age. One participant preferred not to say their age. Table 2 Age range of participants ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS Age range 20 n Percentage 20-25 0 0.00 26-35 19 12.84 36-45 38 25.68 46-55 40 27.03 56-65 38 25.68 66-75 12 8.11 >75 0 0.00 Prefer not to say 1 0.68 Note. n= number of participants in the selected age range Years of teaching experience ranged from less than five years to more than 35 years, with the highest representation from those with 0 to 5 years of experience (36%), closely followed by 6 to 15 years of experience (34%). Only five participants (3%) had more than 35 years of teaching experience. A majority of participants (58%) taught at a private program within the United States. The geographical representation of the respondents showed that a majority of the participants teach at programs in the Midwest and Southeast. Respondents teaching in the Midwest region of the United States accounted for 39%, with an additional 25% teaching in the Southeast. Only 5% of participants report teaching in the Western part of the United States, making it the least represented geographical area. Procedures The researchers obtained Institutional Review Board approval from a small university in the Midwest region of the United States and conducted the study at the same university. Researchers formed the sample through convenience sampling by obtaining emails for all faculty ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 21 at each Accreditation Council of Occupational Therapy Education (ACOTE) accredited occupational therapy program across the United States. Researchers contacted all program administrators for the programs whose website did not provide emails to obtain direct faculty emails for the survey to be sent. Researchers omitted faculty when programs failed to provide emails. Researchers sent the survey to faculty at 209 ACOTE accredited programs across the United States with 180 entry-level masters programs and 29 entry-level doctorate programs. All responses from participants in this study remained anonymous to minimize the chance of researcher and participant bias. Researchers collected data electronically between May 13, 2019, and June 12, 2019, using an online survey created on Qualtrics. Researchers sent a total of two reminder emails, one at two weeks (May 28, 2019) and one at four weeks (June 10, 2019) after participants received the initial survey. The first part of the survey asked participants questions related to demographics and their position within their respective programs. The second part of the survey asked participants to respond to six statements relating to their beliefs regarding their current teaching experience using a Likert scale ranging from strongly disagree to strongly agree. Researchers asked one additional yes/no question about a course teaching professionalism at their respective universities. The following section asked participants to identify how frequently they observe 22 different professional behaviors in their entry-level students by responding with never, infrequently, occasionally, often, or very often. Researchers then asked participants to rate each of the 22 professional behaviors on their level of importance ranging from (1), not at all important to (5) extremely important. Participants then chose what they believe are the seven most important professional behaviors attributes. Finally, participants shared how their programs ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 22 teach or foster professionalism for their entry-level students. An optional prompt was provided for participants to share feedback regarding the survey or their personal opinions/experiences with the topic. Results The results of this study indicate that the majority of participants (98%) agreed either strongly or somewhat that teaching and fostering professional behaviors is an important part of occupational therapy education, while only three participants strongly disagreed with this statement. Table 3 shows this in more detail. Table 3 Attitudes Related to Teaching and Fostering Professionalism in Occupational Therapy Strongly Somewhat Neither agree Somewhat Strongly Question disagree disagree nor disagree agree agree Teaching and fostering 3 (2.05) 6 (4.11) 137 (93.84) 65 (44.52) 65 (44.52) professional behaviors is an important part of occupational therapy education. At the present time, I have concerns about the professional behaviors of one or more of my entrylevel occupational therapy students. 4 (2.74) 4 (2.74) 8 (5.48) ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS The program for which I teach 1 (0.68) 7 (4.79) 23 6 (4.11) 42 (28.77) 90 (61.64) 2 (1.36) 55 (37.41) 90 (61.22) 2 (1.36) 57 (38.78) 88 (59.86) 56 (37.84) 7 (4.73) places a high degree of emphasis on assessing professional behaviors as part of the entry-level occupational therapy program. Professionalism is a construct (concept) that can be learned. Professionalism is a construct (concept) that can be taught. A students age at the time of 11 (7.43) 35 (23.65) 39 (26.35) admission to an entry-level occupational therapy program is a strong predictor of professionalism during the occupational therapy program. Note. All values are expressed as n (%). Questions in table adapted from work by Davis (2009) When looking at a breakdown of the same question by age range, 89% or more of respondents in each age range strongly agree that teaching and fostering professional behaviors is an important part of occupational therapy education. For age ranges 26-35 years, 46-55 years, and 56-65 years, one participant in each group responded with strongly disagree. Only three participants ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 24 across all age range responded with somewhat agree, with no answers of neither or somewhat disagree. Ninety-three percent or more of those in each range of years of teaching experience strongly or somewhat agreed with the statement, with all of those with more than 35 years of experience responding with strongly agree. One participant from 0-5 years of experience, 16-25 years of experience, and 26-35 years of experience each strongly disagreed with the statement. One hundred percent of participants with all degrees other than post-professional master's, postprofessional doctorate in OT, and PhD stated that they agree that teaching and fostering professional behavior is an important part of occupational therapy education. Only one participant with each of the remaining degrees said that they strongly disagree with the concept. Most participants (90%) indicated that they strongly agreed that the program in which they taught placed a high degree of emphasis on asserting professional behaviors as part of the program. Table 3 shows the results of this question. Researchers asked participants if they had concerns relating to the professional behaviors of one or more entry-level occupational therapy students. The majority of participants (89%) indicated they either somewhat agreed or strongly agreed, meaning that the majority of participants have experienced concerns relating to the professionalism of their students. Eight of the total participants disagreed with the statement, suggesting that they do not have concerns regarding the professional behaviors of their students. Table 3 shows additional responses. All participants between the ages of 26 and 35 either strongly or somewhat agree about having concerns with the professional behaviors of one or more of their occupational therapy students. Over 80% of respondents for all remaining age ranges except those between the ages of 66 and 75 either strongly or somewhat agree with the statement. Three participants in the age range 46-55 and 56-65, along with two participants in the age range 66-75, disagreed with the ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 25 statement in some capacity. Ninety-six percent of those with 0-5 years of teaching experience agree about having concerns about the professional behaviors of one or more of their occupational therapy students, but only 60% of those with more than 35 years of experience agree with the statement. Over 75% of all other ranges of years of teaching experience also agreed with the statement. At least one of the participants from each range responded with neither, with a total of eight participants across all ranges disagreeing either somewhat or strongly. Eighty percent of participants or more with each type of degree agreed that they had concerns about the professional behavior of one or more of their occupational therapy students. When asked if professionalism is a construct (concept) that can be learned, 90 participants (61%) indicated that they strongly agreed with this statement, while 55 participants (37%) indicated that they only somewhat agreed with this statement. Only two individuals (1%) neither agree nor disagree with this statement, with none of the participants disagreeing in any capacity. When asked to respond to the statement, Professionalism is a construct (concept) that can be taught, 88 (60%) participants indicated that they strongly agreed with this statement, while 57 (39%) participants indicated that they somewhat agreed with this statement. Two individuals (1%) responded with neither agree nor disagree, and none of the participants disagreed with the statement. Fifty-six participants (38%) stated that they somewhat agree that a students age at the time of admission to an entry-level occupational therapy program is a strong predictor of professionalism. Thirty-nine participants (26%) indicated that they neither agree nor disagree. Only 7 participants (5%) reported that they strongly agree with this idea, with 46 participants (31%) suggesting that they disagree in some capacity. Participants across all age ranges varied in their responses. A maximum of three respondents (8%) from any age range strongly agreed with ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 26 the statement. Over half of respondents for age ranges 46-55 and 56-65, along with the one respondent who preferred not to provide their age agreed with the statement either somewhat or strongly. Sixty-six percent of those aged 66-75 either somewhat or strongly disagreed. Eight of the 14 (57%) participants with 16-25 years of teaching experience somewhat agreed that a students age at the time of admission would strongly predict their professionalism during their program. Sixty percent of those with more than 35 years of teaching experience disagreed. Responses were varied when assessing this question by the highest level of degree. A maximum of 60% of respondents from any one degree agreed that a students age at the time of admission to an OT school would impact their professionalism during the program. At least one participant with each degree disagreed with the concept. Up to 54% of respondents with any one degree responded with neither suggesting that they neither agree nor disagree with this concept. Researchers presented participants with 22 professional behavior attributes from Campbell et al. (2015) and asked them to identify the frequency of which they observed these behaviors in their occupational therapy students. The five most frequently observed professional behavior attributes were team player, responsible, time-efficient, personable, and organized as shown in Table 4. Table 5 shows the frequency at which participants have observed all other professional behavior attributes in students. Table 4 Five most frequently observed professional behavior attributes of entry-level occupational therapy students Professional Never Infrequently Occasionally Often Very often Total 3 (2.14) 18 (12.86) 85 (60.71) 34 (24.29) 140 behavior attribute Team Player ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 27 Responsible 2 (1.42) 18 (12.77) 84 (59.57) 37 (26.24) 141 Time Efficient 5 (3.55) 33 (23.40) 82 (56.16) 21 (14.89) 141 Personable 2 (1.42) 14 (9.93) 81 (57.45) 44 (31.21) 141 Organized 4 (2.84) 30 (21.28) 80 (56.74) 27 (19.15) 141 Note. All values are expressed as n (%). Attributes derived from a study by Campbell et al., 2015 Table 5 Frequency of Student Behavior Behavior Infrequently Occasionally Often Very Often Total Adaptable 6 (4.26) 40 (28.37) 69 (48.94) 26 (18.44) 141 Adherence to policies 4 (2.86) 19 (13.57) 78 (55.71) 39 (27.86) 140 Clinically Competent 4(2.86) 33 (23.57) 80 (57.14) 23 (16.43) 140 Communication Skills 5 (3.55) 40 (28.37) 67 (47.52) 29 (20.57) 141 Confident 10 (7.09) 61 (43.26) 58 (41.13) 12 (8.51) 141 47 (33.57) 51 (36.43) 19 (13.57) 140 Constructive Criticism Never 1 (0.71) 22 (15.71) Creative 6 (4.26) 31 (21.99) 73 (51.77) 31 (21.99) 141 Culturally Competent 6 (4.29) 35 (25) 70 (50) 29 (20.71) 140 Empathetic 1 (0.71) 17 (12.06) 80 (56.74) 43 (30.5) 141 Enthusiastic 2 (1.43) 13 (9.29) 76 (54.29) 49 (35) 140 Ethical 1 (0.71) 23 (16.43) 69 (49.29) 47 (33.57) 140 Independent 12 (8.51) 43 (30.50) 74 (52.48) 12 (8.51) 141 Initiator 5 (3.55) 49 (34.75) 68 (48.23) 19 (13.48) 141 Interpersonal Skills 8 (5.71) 25 (17.86) 81 (57.86) 26 (18.57) 140 Leadership Skills 6 (4.26) 62 (43.97) 60 (42.55) 13 (9.22) 141 ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 28 Organized 4 (2.84) 30 (21.28) 80 (56.74) 27 (19.15) 141 Patient 4 (2.84) 43 (30.50) 76 (53.90) 18 (12.77) 141 Personable 2 (1.42) 14 (9.93) 81 (57.45) 44 (31.21) 141 Positive attitude 3 (2.14) 17 (12.14) 79 (56.43) 41 (29.29) 140 Responsible 2 (1.42) 18 (12.77) 84 (59.57) 37 (26.24) 141 Team Player 3 (2.14) 18 (12.86) 85 (60.71) 34 (24.29) 140 Time Efficient 5 (3.55) 33 (23.40) 82 (58.16) 21 (14.89) 141 Note. All values are expressed as n (%). Attributes derived from a study by Campbell et al., 2015 Researchers asked participants to rank the importance of the 22 professional behavior attributes on a scale ranging from not at all important to extremely important in relation to being a successful occupational therapist in practice. Participants did not rank any attributes as not at all important and only ranked eight as being slightly important. Participants aged 26-35 ranked all 22 professional behavior attributes as at least moderately important when demonstrating professionalism in practice. Participants in this age range rated ethical, personable, adherence to policy, clinically competent, and communication skills as extremely important most frequently. The skills of adaptable and constructive criticism was also at times ranked as extremely important but also appeared as very important within this age range. Over 75% of participants age 36-45, ranked ethical, responsible, and communication skills as extremely important. At least one participant from this age range ranked culturally competent, leadership skills, and organizer as only slightly important, yet over 50% of those in the age range rated culturally competent and leadership skills as extremely important. Sixty-eight percent or more of participants in the 46-55 age range ranked ethical, clinically competent, ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 29 interpersonal skills, communication skills, and responsible as extremely important, with all professional behavior attributes being at least slightly important. Those aged 56-65 agreed, ranking four of the five same attributes as extremely important with leadership skills taking precedence over clinically competent. All participants aged 66-75 rated ethical and communication skills as extremely important, with all but one in this group also ranking interpersonal skills as extremely important. Ten of the 12 in this age range also ranked leadership skills as extremely important, with all participants listing organizer as at least moderately important. Consistencies between age ranges include having ranked ethical as an extremely important professional behavior attribute. In addition, interpersonal skills, clinically competent, and responsible as extremely important, most often behind ethical. An identified discrepancy between ages 26-35 and all other participant age ranges is that the younger age group ranked adherence to a policy as much more important than their older counterparts indicated. When analyzing the same question broken down by the highest level of degree earned commonalities and discrepancies were discovered. Over 80% of participants with a PhD ranked clinically competent, communication skills, ethical, interpersonal skills, and responsible as extremely important, with ethical being ranked extremely important most frequently. Participants with an EdD ranked ethical and interpersonal skills as extremely important most often, while ranking confident and patient as very important most often. Over 70% of those with postprofessional OTD degrees ranked clinically competent, communication skills, ethical, and interpersonal skills as extremely important. Seventy-two percent of participants reported confidence as very important. All participants with a post-professional doctorate reported ethical and responsible as extremely important while over 75% also listed adaptable, adherence to policies, clinically competent, communication skills, empathetic, interpersonal skills, positive ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 30 attitude, and team player as extremely important. Over 70% of participants with a postprofessional masters degree ranked 10 of the 22 professional behavior attributes as extremely important but had varied responses regarding the importance of leadership skills and organizer as some said they were only moderately important with others ranking them as extremely important. All participants with an entry-level OTD degree ranked eight of the attributes as extremely important, with 75% of participants ranking an additional nine as extremely important. Those with post-professional masters degrees and entry-level OTD degrees agreed on the importance of clinical competence, communication skills, cultural competence, empathy, ethics, responsibility, and being a team player. Over 70% of participants with a degree other than those listed in the survey ranked the same attributes as extremely important but also reported creative, independent, and time efficient as extremely important. Participants with an entry level masters of occupational therapy degree most frequently ranked adaptable, adherence to policies, communication skills, ethical, and being responsible as extremely important. Despite having different levels of education, participants with all degree types ranked ethical as extremely important with all groups other than EdD also ranking communication skills as one of the most important attributes. Participants with an OTD degree ranked more attributes as extremely important than any other group. When looking at the ranking of importance of professional behaviors broken down by years of experience, participants with 0-5 years of experience most frequently cited clinically competent, communication skills, ethical, interpersonal skills, being personable, and being responsible as extremely important. Participants with 6-15 years of experience had varied beliefs about the importance of many of the attributes, with only five of the attributes being ranked extremely important by over 70% of those with this much experience. These participants most ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 31 frequently cited being ethical as extremely important. Individuals with 16-25 years of experience most frequently rated communication skills, being confident, and being ethical as extremely important, with being independent as very important. Ninety-two percent of participants with 2635 years of experience ranked communication skills, being ethical, and being responsible as being extremely important. Additionally, over 70% also reported adaptable, clinically competent, culturally competent, and team player as extremely important. There were only five participants with over 35 years of experience, all of whom ranked ethical and communication skills as extremely important. Participants across all ranges of experience agreed on the importance of both ethical and communication skills. Those with fewer years of experience emphasized a higher level of importance for being personable while those with more experience more valued being culturally competent and being a team player. Finally, researchers asked participants to indicate the seven most important attributes for a practicing occupational therapist, as derived from a list of professional behavior attributes (Campbell et al., 2015). Participants reported being clinically competent and ethical, having communication skills and interpersonal skills, and being adaptable, responsible, and empathetic as the seven most important professional behavior attributes, as seen in Table 6. Table 6 Seven Most Important Professional Behavior Attributes for Practicing Occupational Therapists Professional Behavior No. of Times Ranked as One of the % of Times Ranked as One of Attribute Seven Most Important the Seven Most Important Clinically Competent 109 11.34 Ethical 109 11.34 Communication Skills 92 9.57 ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 32 Interpersonal Skills 84 8.74 Adaptable 83 8.64 Responsible 77 8.01 Empathetic 66 6.87 Culturally Competent 60 6.24 Team Player 58 6.04 Adherence to Policies 35 3.64 Constructive Criticism 32 3.33 Time Efficient 27 2.81 Patient 25 2.60 Personable 24 2.5 Independent 15 1.56 Initiator 15 1.56 Creative 14 1.46 Confident 13 1.35 Leadership Skills 11 1.14 Enthusiastic 6 0.62 Organizer 6 0.62 When looking at responses for most important professional behavior attributes by age range, highest earned degree, and years of teaching experience, all subgroups in each category rated clinically competent as one of the seven most important attributes needed by new ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 33 occupational therapists. Participants in all subgroups for age range and years of teaching experience rated ethical and responsible as two of the seven most important attributes. Participants in all age ranges rated ethical, clinically competent, and responsible as most important. All age ranges other than prefer not to answer indicated that communication skills and interpersonal skills were in the top seven. Four of the six age groups rated empathetic as one of the most important attributes, with those aged 46-55 and 56-65 not having the attribute in their top seven. Those aged 46-55 and 56-65 rated culturally competent in the top seven, while participants in age groups 56-65 and 66-75 both rated team player as one of their most important attributes. The prefer not answer respondent and those in the age group 26-35 believed that time-efficient was one of the top seven most important. All participants with all degrees rated communication skills and clinically competent as two of the most important attributes for new occupational therapists to demonstrate. All groups except those with a degree other than what was listed stated that ethical was also one of the top seven most important attributes. Six of the eight groups reported responsible, adaptable, and culturally competent as one of the most important attributes. Those with post-professional doctorate degrees, entry-level OTD degrees, and entry-level MOT degrees were the only groups to not rate interpersonal skills as a top seven most important professional behavior attribute. Those with entry-level OTD degrees, post-professional masters degrees, post-professional doctorate degrees in OT and other degrees rated empathetic as one of the most essential attributes. Those with an EdD degree, an entry-level OTD degree, or a post-professional masters degree all ranked team player in their ranking of most important attributes. Two of the eight groups mentioned initiator and team player as two of the most important attributes. Only one participant in each group mentioned independent, constructive, adherence to policy, and patient. ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 34 Both independent and constructive were only mentioned as most important by those with an EdD degree. All participants of varied years of experience rated clinically competent, ethical, interpersonal skills, and responsible as four of the most important attributes for new occupational therapists. All but one group agreed that communication skills and adaptable are also in the top seven. Therapists with 26-35 years of experience did not report communication skills in their top seven, and those with more than 35 years of experience did not mention adaptable. Neither those with 0-5 years of experience nor those with 16-25 years of experience said culturally competent. Only those with 0-5 years of experience and those with more than 35 years of experience mentioned empathetic. Only those with 16-25 years of experience and those with 26-35 years of experience said team player in their top seven professional behavior attributes. Discussion Several studies found that professional behaviors, although significant to professional practice, are challenging to learn, teach, and evaluate (Hackenberg & Toth-Cohen, 2018; Hodges et al., 2011; Robinson et al., 2012; Stickley et al., 2017). Our study contraindicates this, as a majority of participants believe that professionalism can be both learned and taught. Notably, 98% of participants agreed that teaching professional behaviors in OT education is important yet only 71% state that they specifically teach professionalism. Klemenc-Ketis & Vrecko (2014) report that educators rarely teach professionalism on its own, which begs the question of if the participants in this study are teaching about professionalism directly when addressing the topic. Participants report addressing professionalism most often in education through reading assignments, small group discussions, lectures, and formal faculty meetings but it is still unclear if this information is directly related to professionalism or only incorporates the topic. ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 35 Birden et al. (2014) indicated a lack of experience might be the reason that students have difficulty learning and understanding professionalism. In the current study, 63 participants stated that they agree that a students age at the time of admission to their respected occupational therapy program is a strong predictor of professionalism. This lack of experience may or may not correlate with the age of the students upon admission and is recommended for further investigation. Nonetheless, it is a concept that over 40% of participants believe has an impact on professionalism in practice. In previous studies, students reported a lack of confidence in their ability to adjust to the differing expectations of professionalism when in different contexts (Robinson et al. 2012). Participants in this study did not rank confidence as one of the most important attributes to demonstrate professionalism as a new occupational therapist. This difference may align with the research studies that reported the differences in how OT students and faculty view and comprehend professionalism (Robinson et al., 2012; Sullivan & Thiessen, 2015). In our study, 89% of participants had concerns relating to the professionalism of one or more of their students, which supports the thought of many new OTs not having established professionalism when entering into practice and thus potentially negatively impacting patient outcomes (Aguilar et al., 2012; Robinson et al., 2012; Sullivan & Thiessen, 2015). Jette & Portney (2003) and Stickley et al. (2017) found that physical therapists should demonstrate seven main professional behaviors in practice, which include communication management, critical thinking, interpersonal skills, personal balance, professional development, professionalism, and working relationships. Our study indicated that occupational therapists valued different professional behaviors when compared to physical therapists. These included clinical competence, ethical, communication skills, adaptable, responsible, and empathetic. The ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 36 differences in valued professional behaviors among physical therapy and occupational therapy may be due to differences in the guidelines for practice that each profession has established. What is important in one profession may not be equally as important in another. This difference in importance supports previous research that highlights the broad and vast nature of professionalism within the health care field (Mazor et al., 2007; Robinson et al., 2012; Stickley et al., 2017; Sullivan, & Thiessen, 2015; Zafiropoulos, 2017). Throughout the literature on professionalism, the skill of communication has been talked about many times (Jette & Portney, 2003; Stickley et al., 2017). Mason & Mathieson (2018) found communication to be specifically important to occupational therapy employers. The current research reverberates this phenomenon as participants consistently rated communication as one of the top seven most important professional attributes. The combination of previous and current literature solidifies the importance of communication in demonstrating professionalism in occupational therapy practice. The current study echoes findings by Noonan et al., (2019) regarding the importance of both communication skills and interpersonal skills in professionalism within health care. Researchers found these two professional behavior attributes to be two of the top seven most important attributes for all age ranges of occupational therapists in the current study, except for the one respondent who preferred not to state their age. Participants across the age ranges of occupational therapists ranked both of these professional behavior attributes as extremely important. Physical therapists also ranked these two professional behavior attributes to be important (Noonan et al., 2019), suggesting congruence across both therapy professions. Participants with varying years of experience showed some differences in the importance of these two attributes. While all ranges of experience ranked communication skills as extremely ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 37 important, those with 26-35 years of experience did not put communication skills in the top seven most important attributes. All other ranges of experience ranked it as a top seven attribute, with all groups also ranking interpersonal skills in the top seven most important. While not a significant difference from the Noonan et al. (2019) findings, this does beg the question of why those with more experience did not feel that communication skills were in the top seven most important attributes despite reporting that these skills are extremely important to professionalism. The current study supports additional findings of Noonan et al. (2019) in regard to a lack of differences in rankings of professional behavior attributes based upon age of participant. Being ethical, clinically competent, and responsible were ranked by participants from all age ranges as the most important professional behavior attributes, supporting the thought that professional values trump generational characteristics (Noonan et al., 2019). Additionally, only 38% of participants believe that age at time of admission into an entry-level occupational therapy program influences overall professionalism, further showing that OT faculty believe that professionalism is not related to age or generation but rather to the profession of occupational therapy. Participants across multiple demographics rated ethical as a top seven attributes. Our results highlight the importance of ethics in demonstrating professionalism as a new occupational therapist. While being ethical is important to occupational therapists, it has not explicitly been documented as an independent professional attribute throughout the existing literature. In a previous study by Sullivan and Thiessen (2015), occupational therapy students noted advocacy as an important component of professionalism. It is also important to discuss respect as a major professional trait, as researchers have identified it as such in two influential studies (ABIM, 2001; DeLisa et al., 2001). The researchers in this study utilized a survey adapted from ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 38 Campbell et al (2015), which did not include the professional attributes of respect and advocacy. Therefore, it remains unknown if occupational therapists believe these to be important professional behavior and attributes. It would be beneficial to assess the importance of both respect and advocacy as major professional traits among occupational therapists in future studies on professionalism in practice. Future Research The results of this study identified the seven most important professional behavior attributes that occupational therapy faculty deemed necessary for new occupational therapists to exhibit professionalism in practice. Additionally, this study indicated that all of the listed professional behavior attributes are important in some capacity to demonstrate professionalism within occupational therapy practice. To expand on the findings of this study, future research should focus on establishing what practicing occupational therapists working in the field believe are the most important professional behavior attributes for new occupational therapists to demonstrate. This information would further support the inclusion of education on certain attributes within the didactic education of occupational therapy students. An additional exploration should include analyzing differences between the expected professional behavior attributes of practitioners and those that students exhibit to better understand the difficulties in the teaching and learning of these attributes. Andonian (2013) suggested that emotional intelligence is crucial to address in the teaching of professionalism as it leads to an increase in understanding emotions and emotional self-management. These characteristics relate to communication, increased client centeredness, and increased intervention skills (Hackenberg & Toth-Cohen, 2018, p. 3) suggesting that emotional intelligence and its relation to these professional behavior attributes is a topic for researchers to study in the future. ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 39 Limitations Not all participants in the current study were occupational therapists and, therefore may have different views of what professional behavior attributes are expected within the occupational therapy field. Of the participants, not all played a large or full-time role in the education of students meaning they may or may not have a conclusive knowledge of how other educators teach professionalism within their respected programs. Regarding the administered tool, one question omitted one of the attributes listing only 21 professional behavior attributes instead of 22. Although the literature does not support the omitted attribute as a significant behavior attribute, future research should include it in the list of 22 attributes when administering the tool. The current study has a response rate of 22.9% with only 150 responses from the 655 individuals who received the survey. Despite this response rate, occupational therapy faculty from all regions of the United States participated in the current study. Conclusion The goal of this study was to identify what professional behavior attributes occupational therapy faculty deem necessary for new occupational therapy graduates to demonstrate to be successful in practice. The results of this study indicate that occupational therapy faculty believe that many important attributes contribute to professionalism within the occupational therapy field. Of the 22 professional behavior attributes, participants ranked all as at least slightly important to demonstrate professionalism. Of these, faculty believe the most important attributes are being clinically competent, being ethical, having communication skills and interpersonal skills, and being adaptable, responsible, and empathetic. Despite differences in the ranking by participants age range, highest earned degree, and years of teaching experience, all participants agreed that being clinically competent was the most important attribute related to ISSUES OF PROFESSIONALISM IN OT PRACTITIONERS 40 professionalism with almost all participants stating that being ethical was the second most important professional behavior attribute. This study also indicates that occupational therapy faculty believe that teaching professionalism is an integral part of occupational therapy education and state the concept can both be taught and learned. Despite this and the fact that over 90% of participants believe that their program emphasizes assessing the professionalism of their students, occupational therapy faculty continue to have concerns relating to the professionalism of one or more of their students. Faculty still believe that their students demonstrate professionalism, reporting that they most frequently observe students being a team player, being responsible, being time-efficient, being personable, and remaining organized, although these are not necessarily the most important professional behavior attributes identified by participants. While this study indicates that professionalism within occupational therapy is still a difficult concept to operationalize, as well as what attributes occupational therapy faculty believe are most important for new occupational therapists to demonstrate. 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... Fieldwork Educators Perceptions of Level II Students Emotional Intelligence Jasmine Everfield, Kathryn Haskell, Madeline Hunter, Thomas Jacocks, Kirby Jones, and Rachel Salyers December 10, 2020 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. Rebecca Barton, DHS, OTR, FAOTA A Research Project Entitled Fieldwork Educators Perceptions of Level II Students Emotional Intelligence 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 Jasmine Everfield, Kathryn Haskell, Madeline Hunter, Thomas Jacocks, Kirby Jones, and Rachel Salyers Approved by: Rebecca Barton Rebecca Barton (Dec 14, 2020 11:47 EST) Rebecca Barton, DHSc, OTR FAOTA Faculty Research Advisor Dec 14, 2020 Date Accepted on this date by the Doctor of Occupational Therapy Program Director: Alison Nichols (Dec 10, 2020 11:05 EST) Alison Nichols, OTR, OTD Interim OTD Program Director Dec 10, 2020 Date Accepted on this date by the Chair of the School of Occupational Therapy: Dec 10, 2020 Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date Running head: LEVEL II STUDENTS EMOTIONAL INTELLIGENCE 1 Fieldwork Educators Perceptions of Level II Students Emotional Intelligence Rebecca Barton, Jasmine Everfield, Kathryn Haskell, Madeline Hunter, Thomas Jacocks, Kirby Jones, and Rachel Salyers University of Indianapolis Level II Students Emotional Intelligence 2 Abstract This study was conducted to better understand fieldwork educators perceptions of Level II students emotional intelligence (EI) and its impact on fieldwork performance. The findings contribute to the greater body of knowledge by providing awareness of EI so that fieldwork educators and students may be more informed about its value in fieldwork. Five fieldwork educators from various practice settings participated in a two-hour focus group (Hollis, Openshaw, & Goble, 2002). Based on common theories, EI can be defined as a set of emotional and social skills that influence the way we perceive and express ourselves, develop and maintain social relationships, cope with challenges, and use emotional information in an effective way (Stein & Book, 2011, p. 13). Emotional intelligence is divided into five main categories to serve as a foundation for the discussion. These categories included: self-regulation, motivation, empathy, self-awareness, and social skills (Gutman, McCreedy, & Heisler, 1998). The participants responses were analyzed, resulting in three categories: aspects of EI, the impact that EI has on student development in various practice settings, and growth of students EI that stems from feedback from fieldwork educators and application to Level II fieldwork. The fieldwork educators suggested that communication, personal experiences, and opportunities to independently practice were the variables they found to have the most influence on students EI growth. Continuing research and education on EI are essential for the profession of occupational therapy and the fieldwork experiences of students as they work to become entry-level practitioners. Level II Students Emotional Intelligence 3 Fieldwork Educators Perceptions of Level II Students Emotional Intelligence Level II fieldwork is an integral part of an educational curriculum that prepares students for entry-level work as an occupational therapist according to American Occupational Therapy Association (AOTA) (2018). Emotional intelligence (EI) is a personality aspect that can lend to success in fieldwork, but it is not thoroughly defined or understood. Fieldwork educators, coordinators, and occupational therapy students have acknowledged there is limited research related to EI, and students EI levels may not be adequate for their fieldwork experience (Hanson, 2011). In established research, EI has been documented as an important aspect of professionalism (Andonian, 2017). Emotional intelligence has been researched in healthcare fields such as nursing and physical therapy (Faye et al., 2011), but researchers in the field of occupational therapy have focused on professionalism rather than EI (Andonian, 2017; Grenier, 2015). Because research has shown professionalism to be a category within EI, the current researchers believe it is important to study the impacts that EI can have beyond professionalism. Based on common theories, EI can be defined as a set of emotional and social skills that influence the way we perceive and express ourselves, develop and maintain social relationships, cope with challenges, and use emotional information in an effective way (Stein & Book, 2011, p. 13). This study focused on five aspects of EI as delineated by Gutman, McCreedy, and Heisler (1998): self-awareness, motivation, empathy, social skills, and self-regulation. Researchers indicate students are scoring lower on fieldwork evaluations and have not been as successful in fieldwork experiences in recent decades (Gutman et al., 1998; James & Mussleman, 2006), which may be partially due to a lack of EI in students. This study furthers the knowledge and importance of EI for occupational therapy students and fieldwork educators by Level II Students Emotional Intelligence 4 clarifying how EI is used within occupational therapy fieldwork education. The purpose of this study is to determine what categories of EI are most important to occupational therapy Level II fieldwork educators in order to better prepare occupational therapy students for Level II fieldwork. Literature Review Since the 1980s, researchers have evaluated EI as a predictor of academic and healthcare success (Brown, 2016; Cantor & Kihlstrom, 1987; Gardner, 1983; Gutman, 1998). Wondering about the influence of EI led researchers to develop EI theories that have common categories, including emotional management, communication, attitude, reasoning, awareness, and motivation (Carmeli & Josman, 2006; Goleman, 1996; Lopes, Grewal, Kadis, Gall, & Salovey, 2006; Mayer & Cobb, 2000; Mayer, Salovey, & Caruso, 2008). For occupational therapy students to perform well within fieldwork, they must understand their emotions and the emotions of others, and then apply this knowledge professionally (Brown, 2016). Professional behaviors are essential to occupational therapy students success in academics and fieldwork and must be taught throughout their time in a graduate program in order for them to be well-rounded entrylevel practitioners at the completion of their studies (Hackenberg & Toth-Cohen, 2018, p. 9). These themes of emotional management, communication, attitude, reasoning, awareness, and motivation, in addition to professionalism, are components of EI that can contribute to success in fieldwork education and should be studied further. Occupational therapy education is based on coursework and two levels of fieldwork. The 2011 Accreditation Council for Occupational Therapy Education (ACOTE) Standards describe fieldwork as a crucial part of professional preparation (AOTA, 2012, p. 33). The goal of Level II fieldwork is to develop competent students who can clinically reason well as they advance into Level II Students Emotional Intelligence 5 entry-level practice (AOTA, 2014). Fieldwork sites, educators, and students are bound to the ACOTE standards that determine the guidelines and duration of settings for students, which could influence each students professional and personal experiences. The ACOTE standards C 1.11 to C 1.19 influence how academic fieldwork coordinators structure students fieldwork placements, including how fieldwork educators are chosen, length of fieldwork, skills needed for students to participate in fieldwork, and the evaluation of students (AOTA, 2011). Each ACOTE standard is designed to enable occupational therapy students to achieve entry-level competency in all required areas of practice. The ability to use EI to understand, measure, and develop the skills necessary to build therapeutic relationships is crucial to the improvement of the occupational therapy profession, and fieldwork educators appreciate students from occupational therapy education programs who are well prepared for fieldwork (Andonian, 2017; Evenson, Roberts, Kaldenber, Barnes, & Ozelie, 2015; Taylor, 2008). Fieldwork educators try to shape students in a positive way as the students continue to develop their personal goals and preferences as future occupational therapists (Clarke et al., 2015). Fieldwork educators understanding of EI and their expectations of students influences the way they teach and guide the students they supervise during fieldwork. Healthcare professionals, including fieldwork educators, use their EI daily as they interact with clients, caregivers, and other healthcare providers. Occupational therapists and other professionals use EI whenever communication and emotions intersect (Andonian, 2017). In the field of occupational therapy, it is necessary for practitioners to have effective EI to work with other medical professionals, build rapport with clients and their families, determine therapy goals for the client, and facilitate therapy sessions (Brown, 2016). Occupational therapy students with low EI may struggle to pass fieldwork requirements (Gribble, 2018). According to Gribble Level II Students Emotional Intelligence 6 (2018), occupational therapy students show room for improvement in the areas of regulating stress and working through issues that arise on fieldwork. Occupational therapy students EI can improve through exposure to diverse environments and life experiences in all contexts (Faye, 2011). Improvement in EI can lead to increased stress regulation and problem solving for Level II fieldwork students. Level II fieldwork educators have the potential to cultivate an environment in which a students EI level can improve, but the fieldwork educator and student need to have the same understanding and expectation for EI and how it develops. Students can increase EI beyond fieldwork experiences by working towards enhancing empathetic behaviors, dealing with complex emotional situations independently, collaborating well within team interactions, and making better clinical decisions (Gribble, Ladyshewsky, & Parsons, 2019). Gribble et al. (2019) found that integrated learning through university curriculum, the clinical supervisors continuous feedback, and supervisor training on EI can increase EI competencies of occupational therapy students. Therefore, by providing students with competent clinical supervisors and adequate content from their curriculum relating to EI, students can achieve higher levels of EI more readily in their Level II fieldwork settings. Currently there are limited valid and reliable tools to test and measure EI levels in occupational therapy students. In order to understand what level of EI is needed to succeed in occupational therapy and in Level II fieldwork, more information is needed on the categories of EI that fieldwork educators currently place at a high value. Research that focuses on effective leadership and EI, in people other than students, is lacking (Andonian, 2013; Kerr, Garvin, Heaton, & Boyle, 2006). The student perspective of fieldwork experiences has been acknowledged in the literature to help inform and improve fieldwork education; however, the fieldwork educator perspective has yet to be studied (Grenier, 2015). Level II Students Emotional Intelligence 7 Because the researchers have not found a specific understanding of EI for therapists or students defined in the literature, the aim of this study is to determine the value of EI for practicing therapists who are fieldwork educators in order for educators to better prepare students for their fieldwork experience. In this study, fieldwork educators provide further insight into the characteristics of EI that are more apt to lead to success in student performance on fieldwork. The hope is that students will be more informed about how to prepare as they begin their respective fieldwork rotations. If occupational therapy students can learn about their level of EI, including how to effectively control their emotions and the ability to perceive others emotions, then we hypothesize this awareness will increase success in Level II fieldwork. Methodology Design Researchers conducting this study used qualitative methods through a single focus group session to collect narrative data about fieldwork educators perspectives on EI in occupational therapy practice and Level II fieldwork students (Taylor, 2017). The research group had limited time, preventing additional focus groups from occurring (Hollis et al., 2002). The study design was implemented using a phenomenology approach (Wilding & Whiteford, 2005) through inductive reasoning in order to better understand the data gathered and the use of EI in occupational therapy fieldwork. Participants The focus group participants were five registered occupational therapists, currently working as Level II fieldwork educators in the state of Indiana. Hollis et al. (2002) reported that five focus group participants are acceptable when additional depth on the topic is necessary. Purposive criterion sampling was used to recruit participants from the University of Indianapolis Level II Students Emotional Intelligence 8 School of Occupational Therapy fieldwork educator database. The inclusion criteria included practicing as a registered occupational therapist for at least two years, having hosted Level II fieldwork students for at least one year, working and living within two hours of Indianapolis, and regularly hosting students from both University of Indianapolis and other institutions. These criteria were chosen to ensure participants had experience working with students from a variety of programs, implying diverse knowledge of EI in a fieldwork setting. Participation was voluntary within this study, and it was communicated in the informed consent document that participants could remove themselves from the study at any point in time (see Appendix A for the informed consent document). Materials The focus group facilitators used an informational powerpoint presentation with a handout to educate the participants about the topic of EI and supply them with a reference point during the discussion (see Appendix B for informational materials). The researchers recorded the session with one audio-only device from the University of Indianapolis and two personal, password-protected devices to ensure accuracy of statements and for transcription purposes. At the conclusion of the focus group, anonymous response satisfaction surveys were distributed to participants via email to record the accuracy of the transcription and quality of the conclusions made by the researchers as a trustworthiness strategy to enhance credibility (see Appendix C for survey sent to participants). Procedure Informational emails and phone calls describing the study and asking for participants were communicated to multiple fieldwork coordinators and educators in diverse practice settings (see Appendix D for initial invitation). The fieldwork educators were informed about the purpose Level II Students Emotional Intelligence 9 of the study, procedures of the study, time commitment, potential benefits, and potential risks. Each fieldwork coordinator was asked to send this email to fieldwork educators in their setting that met the inclusion criteria for the study. Participants were provided a date to RSVP for the study. Five fieldwork educators responded and consented to participate. Due to the limited responses we received, our primary investigator/research advisor made additional phone calls to more fieldwork educators. Participants were also asked to forward this information along to other fieldwork educators who met the inclusion criteria and might be interested in participating in the study. Occupational therapy settings represented by the participants included inpatient acute care, inpatient psychiatric care, adult day center community care, and outpatient hand therapy. A focus group discussion took place in a classroom in the Health Pavilion on the University of Indianapolis campus. Upon entering the room, participants were asked to sign the informed consent document. The informed consent document included consent to voluntarily participate, to be recorded during the focus group, and to be contacted for follow-up surveys via email. All participants fully consented at the time of the focus group. This consent form also included information detailing what their consent entailed, assurance of confidentiality, and space for signatures. Participants were assured that any documentation would be de-identified prior to publication. The documents and recording device were kept in a locked box in the research coordinators office so researchers could send participants a follow-up survey for the purpose of group member-checking and to ensure credibility of results. Light refreshments (cookie tray, water) were provided to participants during the time of the focus group. Four student researchers and the research advisor led the session which lasted for two hours and included discussion of nine questions relating to fieldwork educators evaluation and experiences of EI in Level II fieldwork students. The student researchers presented a brief Level II Students Emotional Intelligence 10 educational overview on EI to set a baseline level of knowledge for the participants. Prior to asking the following questions, the researchers reminded participants to not specify past students names or the names of the programs that the students they were referring to were enrolled in at the time of fieldwork. The participants were again informed that the session would be recorded for transcription and analysis purposes. Prior to the focus group, two faculty fieldwork educators from the University of Indianapolis peer-reviewed the focus group questions. All peer-reviewers unanimously approved the questions, and no suggestions for edits were indicated. The questions asked included: 1. What is your understanding of EI? 2. What positive experiences have you encountered with EI in practice and with students (not just UIndy students)? 3. What negative experiences have you encountered with EI in practice and with students (not just UIndy Students)? 4. What aspect of EI is most obviously missing in fieldwork students? 5. What characteristics of EI are most important for occupational therapy? 6. How do you use these important characteristics in everyday practice? 7. What expectations do you have for students beginning fieldwork? 8. Can you describe your ideal Level II fieldwork student? 9. What can you do as a fieldwork educator to improve a students EI throughout the fieldwork experience? Student researchers observing the group took digital notes of points of interest made from participants to be reviewed after the coding process was complete. Following the focus group, two student researchers used the audio recording to transcribe the data. Participants were Level II Students Emotional Intelligence 11 sent two follow-up surveys through an email link to Qualtrics XM after the focus group to confirm validity of categories and accuracy of transcription. Data Analysis Two researchers transcribed the focus group data from the voice recording onto separate electronic documents, omitting any identifiable information. The other research group members confirmed the transcription to ensure credibility through member checking as the researchers reviewed the document as a group while concurrently listening to the audio file. Researchers were able to apply triangulation of data sources and investigators since focus group members worked in various occupational therapy settings and there was a research team rather than a single researcher. The researchers sent the transcription via email correspondence and Qualtrics XM survey to the participants prior to researchers beginning the coding process for member checking. No participants responded to the first survey to confirm the results. Four researchers individually created codes through inductive reasoning and in vivo coding based on the data collected. Two researchers created nine codes each based on the data, and the other two researchers created 12 codes each. A total of 42 codes were consolidated and organized to make three categories from the data following in vivo, pattern, and inductive coding (Johnson & Christensen, 2014). The final categories and subcategories were member checked by the participants via email correspondence through a second Qualtrics survey. Two participants responded and confirmed the results. Findings Level II Students Emotional Intelligence 12 After reviewing and analyzing the information from the focus group transcript, three main categories emerged: aspects of EI, differences in the development of EI, and growth in occupational therapy students EI. Aspects of Emotional Intelligence Aspects of EI discussed in the focus group included six subcategories: self-awareness, self-regulation, motivation, social skills, empathy, and professionalism. Self-Awareness. Self-awareness is the ability to understand and reflect on ones emotions and take appropriate actions (Goleman, 1996). Participants identified self-awareness as one of the most obvious and most frequently lacking areas of EI in occupational therapy students. One participant stated, . . . when there are issues [self-awareness] is kind of the one that stands out to me. Self-awareness was also discussed in the context of interacting with others and that self-awareness was required to respond in an appropriate demeanor. A participant stated, The expectations I have for myself...not putting those on other people, because I have very high expectations for myself. And I know this, and I do practice this, but sometimes I slip. One participant described relying on self-awareness and facial expression, stating, part of my own emotional awareness is that... I have to know that I have this look. That is, I think [the look is] discerning, but other people might see it as otherwise. Participants also reflected that they continue to work on this component of EI as practitioners along with other areas of EI: I think for me I can work on both of those things [self-awareness and self-regulation]. Self-Regulation. Self-regulation is how one handles tough situations by remaining calm and motivating oneself to move on and achieve excellence (Goleman, 1996). When discussing self-regulation during the focus groups, participants emphasized the concepts of coping under various circumstances, managing ones own emotions, and perceptions of how students express Level II Students Emotional Intelligence 13 their emotions and behaviors. Various circumstances requiring high levels of self-regulation were discussed, specifically the time of day that clinicians are providing care to clients. For example, one participant who practices in a community setting discussed how it can be difficult to maintain self-regulation, stating, [I will be] maintaining that regulation depending on the time of day it happens. I have one individual that I work with that was calling me at 5:30 AM to tell me that he was out of frozen vegetables. That was a time when not maintaining [my] emotions was [evident]. Sometimes that emotion comes through because youre human. One participant described how she uses self-regulation coping techniques in practice to manage her own emotions when she begins to feel frustrated. She used these strategies to prevent clients or students from perceiving that negative emotion. She stated, I need to make sure I take a deep breath and give them time to process and make sure Im not coming across [poorly] with my own expectations. Another participant elaborated on this point and stated how she has to manage her self-regulation when supervising students so that the student can have more freedom and independence, even when the educator is aware that as a clinician he or she could complete the task more efficiently. This participant stated, Its kind of like going out on a limb, like you know you might be wrong, but its okay. You might not get an A on this one, but its okay. One participant stated that developing rapport with clients that have poor self-regulation is a skill that can be difficult for students. Lastly, a participant stated that she has perceived occupational therapy students self-regulation levels increasing with the transition from a masters degree requirement to a doctoral degree, elaborating, I noticed a difference in EI from when [occupational therapy program requirements] moved from an entry-level bachelors into an entry-level masters level program. I Level II Students Emotional Intelligence 14 thought the quality of the students that were coming in, [the doctoral students] seemed to be more highly motivated and had better self-regulation. Motivation. Motivation is a quality that promotes focused actions towards achieving goals (Goleman, 1996). Confidence in ones abilities generally enhances motivation (Benabou & Tirole, 2002). Fieldwork educators discussed motivation in the areas of confidence, personal factors outside of the classroom, and knowledge of assignments. Participants agreed that over time students become more confident in their clinical skills and maintain self-regulation during fieldwork. One participant stated, They come in with a different level of confidence because theyve done some [fieldwork]. . . . They just have that more confidence, [saying] Ive done some things, Ive been successful in this area, and I know I can handle this when Im going forward. Fieldwork students have to reconcile their personal and professional motivation within each setting in order to be successful on the rotation. One participant stated that she has experienced some students struggling with motivation during fieldwork, but typically all students have a high level of motivation. A participant stated, The motivation is huge, just that self-driving force, because were going to help you as much as we can. Were your CI [clinical instructor]. Were going to help guide you, help maximize your learning experience, but we cant want it more than you. Participants also agreed that motivation is often impacted by differences in personality and the external factors a student experiences during their fieldwork. One participant stated, Personalities are all so different and their backgrounds. I think knowing that student can help you kind of guide them, and being aware of their background and their cultural diversity is important when working with the [students]. Lastly, the participants identified that a students Level II Students Emotional Intelligence 15 motivation to take responsibility for school assignments throughout the fieldwork rotation reflects their EI. One participant stated, Youre responsible. Youre in charge of this stuff. You let your fieldwork educator know. Its not [the fieldwork educators] responsibility. Social Skills. Social skills are the ability to understand what other people think (Goleman, 1996). Participants discussed social skills in different therapeutic relationships: (a) occupational therapy fieldwork students social skills with clients, and (b) fieldwork educators social skills with clients and with occupational therapy students. One participant stated that in the psychiatric setting, students often have difficulty socially interacting with the clients because proper interaction requires a balance of not being condescending with patients but not also talking over their heads. Another participant stated that social skills are the biggest component for occupational therapy students to develop in order to build rapport, increase participation, and determine important occupations for each client, describing, As an [occupational therapist] coming in being client-centered, [we are] looking at this holistic situation. Especially with trauma, we have a very short timeframe to get a lot done, to get the patient engaged. I would say thats probably the biggest component to me would be social skills. Also, a participant noted that sensing and responding to family members emotions helps build rapport in order to have effective sessions. Lastly, one participant discussed how practitioners in the field of occupational therapy need to be empathetic with all clients and caregivers, referencing how to be empathetic with the families in the room with a patient that is intubated, and recognizing other peoples emotions ahead of your own can also get you further in sessions. Empathy. Empathy is the ability to understand other peoples feelings (Goleman, 1996). Empathy was discussed during the focus group as an essential component to occupational Level II Students Emotional Intelligence 16 therapy. One participant described empathy as the ability to understand where that individual [client] is coming from in order to appropriately respond. Another participant described how empathy is required when fieldwork educators are working with students, the stressors of learning how to implement various clinical skills, and the various life events that impact students performance. Additionally, one participant stated that empathy is crucial for successful client interactions because many of the clients occupational therapists treat are recovering from a traumatic event and their life has totally changed. Professionalism. The definition of professionalism varies based on the discipline, setting, and context but can be conceptualized as the necessary skills and behaviors that help make an individual respectful and successful in their profession (Campbell et al., 2015). When discussing professionalism, the participants elaborated on an additional subcategory of flexibility. One participant stated that professionalism and flexibility are important for a successful Level II fieldwork experience that allows productive learning and growth. The participant elaborated on this and stated, For [Level II fieldwork rotations] I think I would say professionalism is a big one and then flexibility is really big. Especially in inpatient [settings]. Things are always changing, and so being flexible is key. Another participant discussed flexibility in clinical situations and feeling the need to encourage students by asking, What are you going to do? Whats your plan? And youve always got to have that backup plan. Like you say [the plan is] a,b, and c, and hows my day going to go if it changes . . . I think sometimes [the students] get so focused on the plan they bring out that they then, if something happens, it is like Oh, I dont know where to go with that. One participant defined professionalism as being on time, taking initiative to look up information, completing chart reviews, and consistently providing the highest quality of care. Level II Students Emotional Intelligence 17 Another participant agreed that taking that initiative and being self-driven are important characteristics of professionalism. Conversely, another participant stated they have had few experiences with students that do not have appropriate levels of professionalism or respect. Differences in Development of Emotional Intelligence Differences in the development of EI were found to be based on variations in practice setting, fieldwork educators, students, and response to potential challenges. The participants reported that it is often clear which category or categories of EI may be lacking in students. As stated by one participant, [The missing category of EI] varies by student, because each student is different. I dont necessarily see any consistent EI categories across all students. Ive seen some that have had difficulties with motivation, Ive had some difficulties with emotions, some difficulty with self-regulation, some with self-direction. Another participant elaborated that for all but one fieldwork student they had taught, motivation is not a component of EI that is lacking. The subcategory of differences in students was further delineated into how their personality, personal background, past experiences in fieldwork, and fieldwork duration impact EI. One focus group participant stated, everyone interacts differently, which reveals the individual differences of each student and fieldwork educator. Another participant reflected on her experience as a fieldwork educator, stating, [when] supervising others, youre aware of different personalities and different interests. Being aware of these differences can aid the fieldwork educators in managing the Level II fieldwork students. Growth in Emotional Intelligence Level II Students Emotional Intelligence 18 Participants stated their feedback and criticism, the opportunity for a student to independently respond, and fieldwork educators expectation that students EI would grow throughout the fieldwork experience impacted students growth in EI . One participant said, . . . being able to take feedback and being willing to learn and grow is really important, because thats why theyre there, and were there to help them do those things. Ideally, students should be . . . able to take feedback, and then not just take the feedback, but be able to utilize that feedback where you see the change. Participants mused that feedback and criticism contribute to students growth based on the students self-awareness and an adaptive response to the feedback. The participants agreed that students largest growth occurs in the 8- to 12-week window of their Level II fieldwork experience, by which point students are encouraged to respond to client needs and grow in confidence as a practitioner as they learn through trial and error. I love the 12-week students. The 8-week programs, its been very frustrating for me to have those 8week students, because I just dont feel like they have enough time to get fully ingrained and fully set. One participant stated, [students] are going to try something that youre like, I dont know if thats going to work, but then it does. Participants concluded that students growth in EI categories through this time helps with clinical decision-making. A participant stated, I think giving them the opportunity to try and fail or succeed on their own is preparing [students]. Discussion The purpose of this study was to determine what categories of EI are most important to occupational therapy Level II fieldwork educators in order for students to be better prepared for Level II fieldwork. Participants discussed their understanding of EI and how students performance on Level II fieldwork improved the development of EI. When reviewing the Level II Students Emotional Intelligence 19 literature, it was found that EI is multifaceted and can be separated accordingly into different categories (Calabrese, Lape, & Delbert, 2019; Gutman et al., 1998). For the purpose of this study, the researchers decided to reference five comprehensive categories of EI set by Gutman et al. (1998) to serve as a framework for the discussion during the focus group. The participants' responses provided during the focus group determined this studys six finalized categories with the addition of professionalism. Following data analysis, the researchers found that the categories were congruent with themes found in literature (Gutman et al., 1998). Additional categories discussed in the study contribute to the current body of knowledge surrounding the EI of occupational therapy students. The participants agreed that the provided categories represented EI seen in students and were necessary for practice. They felt that all categories related to each other, and none were more significant than the other to achieving high levels of EI. The participants determined that EI is a characteristic unique to everyone that reflects previous professional and personal experiences. Though generally recognized by clinicians in practice, the current researchers found limited evidence of EI being explicitly documented or reviewed in previous research specific to Level II fieldwork and occupational therapy students. The participants emphasized the impact on students EI during fieldwork experiences. The process of growth in students EI was a pivotal point of discussion and a critical finding in the data gathered. The fieldwork educators expressed that students EI is typically at appropriate levels when starting fieldwork if students can professionally communicate, receive constructive feedback, and implement suggested changes. The fieldwork educators conveyed that students EI typically shows most improvement throughout the last four weeks of the 12-week experience, although Level II fieldwork experiences can be formative through the duration. The reason for this growth was speculated to be due to students independently responding to clients Level II Students Emotional Intelligence 20 and managing the occupational therapy plan of care after week eight. When students have the opportunity to implement their own intervention ideas, regardless of degree of success, the student learns how to communicate with clients and redirect the session so that it is still successful in a new way. Along with increased independence, the participants reported that self-reflection and frequent discussion between fieldwork educators and students are beneficial strategies to improve students EI. Other researchers have found that various modes of self-reflection, including journaling, throughout fieldwork experiences were helpful for determining beneficial coping strategies and immediate action steps to improve interactions with clients and coworkers (Iliff et al., 2019; Perkins & Schmid, 2019). When properly supported by their fieldwork educator to take the time to self-reflect on challenges, stressors, and positive responses, fieldwork experiences are a pivotal time for students confidence and EI to improve. Fieldwork educators highly influence students EI growth through providing feedback and clear communication. If fieldwork educators are not positively cultivating students EI, there is potential for students EI to decrease throughout their fieldwork experience (Gribble, Ladyshewsky, & Parsons, 2019). Participants did not give specific examples to support this in the focus group, indicating the need for further discussion in the future. Based on the analysis from the focus group, fieldwork educators perceive that the six components of EI improve through clinical experiences when fieldwork educators understand EI, provide frequent and constructive feedback to the student, and allow students nearly full independence with clients plan of care by the end of the fieldwork experience. Other researchers have determined alternative strategies that improve EI. Calabrese, Lape, and Delbert (2019) found that online training modules facilitate improvement for all categories of a students EI. Level II Students Emotional Intelligence 21 Gribble, Ladyshewsky, and Parsons (2019) found in a longitudinal study that experiential clinical environments alone do not consistently improve graduate students EI levels. For students EI levels to improve, additional education, programs, and habits need to be in place in order to effectively improve all categories of students EI (Gribble et al., 2019). One contradictory finding between information retrieved from current literature and the perspective of the fieldwork educators is the overall changes in EI. Researchers have found that EI levels are decreasing without explainable reasons (Gutman et al., 1998; James & Mussleman, 2006), but the participants have perceived students EI gradually improving with the transition from a bachelors degree to a doctoral degree requirement in the field of occupational therapy. The researchers believe that this discrepancy between established research and our participants opinions may be a result of regional differences and whether doctoral, masters, or bachelors level degrees were offered to students participating in the established research. The length of time of the fieldwork placement may also impact students level of EI throughout their rotation. Each university determines length of Level II fieldwork as long as a total of 24 weeks of fieldwork are completed; however, the participants in this study felt that dividing Level II fieldwork into two 12-week rotations was the most beneficial to students. Implications for Occupational Therapy Practice Emotional intelligence traits allow students to improve their interpersonal and intrapersonal skills, coping strategies, and emotional management during their fieldwork placements. Fieldwork educators described self-awareness, self-regulation, and motivation as commonly recognized and utilized during Level II fieldwork. Students use self-awareness to improve intuition and clinical reasoning skills that guide decision making during treatment sessions, including performing assessments, developing interventions, and setting appropriate Level II Students Emotional Intelligence 22 goals for clients. By incorporating self-regulation in practice, Level II students can cope with uncommon or uncomfortable situations and manage their emotions accordingly. Increased knowledge of EI can help students enhance empathic behaviors, deal with complex emotional scenarios independently, perform well in team interactions, and ultimately make better clinical decisions (Gribble et al., 2019, p. 8). Limitations This study had several limitations. Although the sample was specifically chosen based on convenience and practice setting, the small number of participants in the focus group does not represent all fieldwork educators experiences or insight on the topic, reducing the transferability of this studys findings. The participants practice settings varied but did not represent all occupational therapy settings, further reducing transferability. The students conducting the focus group were novice researchers, and no trial focus group sessions were conducted. The variation in fieldwork educators responses throughout the focus group discussion and only completing one focus group prevented saturation, therefore eliminating the possibility of eliciting as much information as possible from the participants, reducing confirmability and credibility. Future Research Future research is needed to address remaining gaps of knowledge related to EI within the field of occupational therapy. Current research on occupational therapy students EI highlights quantitative data using general outcome measures to track changes and evaluate students EI. Due to the subjective nature of EI, additional research needs to be conducted to review students and fieldwork educators perspectives. Additionally, EI has not been longitudinally studied in occupational therapy practitioners nor how EI changes over time or improves with clinical experience. Development of a valid and reliable outcome measure for EI Level II Students Emotional Intelligence 23 in the field of occupational therapy or occupational therapy education would specifically benefit occupational therapy practice by encouraging therapists to engage in self-reflection and further develop therapeutic use of self. An occupational therapy-specific assessment for monitoring changes in EI throughout occupational therapy programs would also improve consistency of research and practicality for implementation in occupational therapy education. The ACOTE standards referenced in this study have been replaced by new standards, which will need to be referenced by occupational therapy students and fieldwork educators. Future research will need to evaluate the updated 2018 ACOTE standards C 1.10- 1.16 (AOTA, 2018) and their relationship to the importance of growing students EI. Other studies may focus on determining the specific variables in students experiences that impact EI positively or negatively. EI is a broad and evolving area of study, and understanding components that influence the development of EI would make occupational therapy professionals and students better equipped to treat clients, work as productive colleagues with other healthcare professionals, and manage their emotions in a professional manner. Conclusion Fieldwork educators who participated in this study confirmed that EI can be defined as six main components that are interactional through various circumstances experienced in occupational therapy practice and education. The participants expressed that students EI growth was most evident in the last four weeks of a 12-week Level II fieldwork rotation due to students increased independence with client care and implementing interventions with minimal suggestions from a fieldwork educator. Overall, communication, personal experiences, and opportunities to independently practice were the variables that emerged as categories that the fieldwork educators felt impacted students growth in EI. Self-awareness, self-regulation, and Level II Students Emotional Intelligence 24 motivation emerged as the most apparent EI aspects already present in students the participants had supervised. The participating fieldwork educators perceived that students EI is typically at appropriate levels when entering fieldwork experiences, but with appropriate communication, reflection strategies, and opportunities conducive to learning, the fieldwork educators noticed potential improvement in students EI during Level II experiences. Level II Students Emotional Intelligence 25 References Andonian, L. (2013). Emotional intelligence, self-efficacy, and occupational therapy students fieldwork performance. 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OTJR: Occupation, Participation and Health, 25(3), 98 104. doi:10.1177/153944920502500303 Level II Students Emotional Intelligence 30 Appendix A Informed Consent The University of Indianapolis School of Occupational Therapy KEY INFORMATION FOR POTENTIAL RESEARCH PARTICIPANTS Level II Fieldwork helps prepare students for work after graduation by completing 24 weeks of practical experience. Emotional Intelligence (EI) has become an increasingly important aspect to ensure success in fieldwork, yet it is still not thoroughly defined or understood. Fieldwork educators, coordinators, and occupational therapy students have acknowledged that there is limited understanding of EI, and students EI levels may not be adequate for their fieldwork experience. This study will further the knowledge and importance of EI for occupational therapy students, fieldwork educators, and working professionals, and clarify the role of EI within occupational therapy. The purpose of this study is to determine what aspects of EI are most important to occupational therapy Level II Fieldwork educators in order to better prepare occupational therapy students for Level II Fieldwork. Inclusion criteria includes being an OTR for at least two years, being a Level II FWE for at least one year, working and living within two hours of Indianapolis, regularly hosting University of Indianapolis OT students, as well as students enrolled in occupational therapy programs. A focus group will be used to gain insight into fieldwork educators experiences. Data will be analyzed using intuitive reasoning and in vivo coding and interpreted into an electronic document. A follow-up survey will then be sent to verify correct documentation of discussion, and a second follow-up survey will be sent to verify categories coded by the researchers. The researchers are seeking your consent. Participation in research is voluntary. The focus group will last for two hours on the University of Indianapolis campus, and follow-up surveys will be sent within three weeks of the focus group meeting. There are no anticipated risks or discomforts. Any personal data disclosed during the focus group will be de-identified or removed from the transcript. Participation will benefit fieldwork educators by providing insight into students emotional intelligence levels and contribute to the greater body of knowledge by providing students with information about fieldwork educators experiences regarding emotional intelligence. CONSENT TO PARTICIPATE IN RESEARCH STUDY Level II fieldwork educators perception of occupational therapy students emotional intelligence. Study Principal Investigator (PI): Dr. Rebecca A. Barton, OTR, FAOTA UIndy Email: rbarton@uindy.edu UIndy Telephone: 317-788-3511 Level II Students Emotional Intelligence 31 Dr. Rebecca A. Barton, OTR, FAOTA School of Occupational Therapy at the University of Indianapolis (UIndy) are conducting a research study. You were selected as a possible participant in this study because you meet the inclusion criteria of being an OTR for at least two years, a level II fieldwork educator for at least one year, working and living within 2 hours of Indianapolis, Indiana, and have hosted UINDY fieldwork students along with other students from various Occupational Therapy programs. Your participation in this research study is voluntary. Why is this study being done? The purpose of this study is to better understand fieldwork educators perceptions of Level II students emotional intelligence and the impact on fieldwork performance. At the completion of this study, the findings will contribute to the greater body of knowledge by providing awareness of emotional intelligence so that fieldwork educators and students may be more informed about its value in fieldwork. What will happen if I take part in this research study? If you volunteer to participate in this study, the researcher will ask you to do the following: Participants will engage in a focus group with other people who fit the inclusion criteria. This will be a one time activity face to face. There will be 10 formal questions asked and conversation guided by the researchers. All of the questions will relate to fieldwork and emotional intelligence. Participants will be sent two follow up surveys through an email link after the focus group. The first one is to validate the findings from the focus group. Example: Is this what you recall saying? The second survey will be validating the categories after being coded. Example: Do these categories seem accurate based on your focus group experience? The study will take place in a classroom in the Health Pavilion at the University of Indianapolis. How long will I be in the research study? Participation will take a total of about two hours at the University of Indianapolis for a focus group session, travel time to and from campus, and 20 minutes to review findings and complete a follow up survey. The follow up study will be sent out within three weeks of the focus group. Level II Students Emotional Intelligence 32 Are there any potential risks or discomforts that I can expect from this study? There are no anticipated risks or discomforts. Are there any potential benefits if I participate? You may benefit from the study a greater understanding of emotional intelligence concepts and their application in occupational therapy practice. Participants may also gain insight in how to better interact with students during fieldwork to facilitate their emotional intelligence improvements. Participants will be offered refreshments (cookies, water) at the focus group session. The results of the research may allow for occupational therapy educational programs to incorporate into the curriculum the aspects of Emotional Intelligence that are most valued by Level II Fieldwork Educators. Therefore, students may be better prepared for fieldwork by being made aware of the fieldwork educators expectations. What other choices do I have if I do not wish to participate? If you choose not to participate in this study, then you may leave the focus group at any time. If you do not wish to be emailed the follow-up survey from the focus group, then your email will be taken off the list and we will not send out the survey. Will I be paid for participating? No. Will I receive course credit for participating? No. Will information about me and my participation be kept confidential? The results of this study may be published in a scholarly book or journal, presented at professional conferences or used for teaching purposes. However, only aggregate data will be used. Personal identifiers will not be used in any publication, presentation or teaching materials. The audio record tape and completed Informed Consent Forms will be kept in a locked drawer in the locked office of the primary research investigator. Only members of the research group will have access to the audio file for data analysis. Will the data from my study be used in the future for other studies? It is possible that de-identified data from this study could be used for future research or shared with other researchers for use in studies, without additional informed consent. De-identified means that any codes and personal information that could identify you will be removed before the data is shared. Will my data be shared in any other way? Level II Students Emotional Intelligence 33 De-identified data will be presented in the finalized study to University of Indianapolis faculty and students. What are my rights if I take part in this study? You can choose whether or not you want to be in this study, and you may withdraw your consent and discontinue participation at any time. Whatever decision you make, there will be no penalty to you, and no loss of benefits to which you were otherwise entitled. You may refuse to answer any question/s that you do not want to answer and still remain in the study. Who can I contact if I have questions about this study? The Research Team: If you have any questions, comments or concerns about the research, you can talk to the one of the researchers. Please contact: Study Principal Investigator (PI): Dr. Rebecca A. Barton, OTR, FAOTA Email: rbarton@uindy.edu Telephone: 317-788-3511 The Director of the Human Research Protections Program (HRPP): If you have questions about your rights as a research participant, or you have concerns or suggestions and you want to talk to someone other than the researchers, you may contact the Director of the Human Research Protections Program, by either emailing hrpp@uindy.edu or calling 1 (317) 781-5774 or 1 (800) 232-8634 ext. 5774. Follow up studies We may contact you again to request your participation in a follow up study. As always, your participation will be voluntary and we will ask for your explicit consent to participate in any of the follow up studies. How do I indicate my informed consent to participate in this study? If you consent to participate in this study, then you affirm that you satisfy inclusion criteria and your consent is voluntary. To indicate your voluntary consent and proceed with the questionnaire, select one of the following options: I voluntary consent to participate in this study. I do NOT consent to participate in this study. Level II Students Emotional Intelligence 34 Please indicate whether or not you consent to the following, but checking the appropriate box and initialing: I agree to have this interview audiotaped : YES NO Initial ____________ I agree to be contacted for a follow-up study: YES NO Initial ____________ You will be given a copy of this information to keep for your records. You do not need to sign this, or any other document to indicate your consent. Completion and return of the questionnaire indicate that you are willing to participate. Level II Students Emotional Intelligence 35 Appendix B Informational Materials Figure B1 Level II Students Emotional Intelligence Figure B2 36 Level II Students Emotional Intelligence 37 Appendix C Surveys Sent to Participants Survey 1: Is this what you recall saying? Survey 2: Does this align with what you understand about emotional intelligence? Do you agree with our analysis with what this means for our profession? Were you satisfied with this experience? Do these categories seem accurate based on your focus group experience? Level II Students Emotional Intelligence 38 Appendix D Initial Invitation to Participants Dear FW Coordinator and/or Educator, We are a group of doctoral students from the University of Indianapolis School of Occupational Therapy (OT). We have been researching information on how Fieldwork Educators (FWE) perceive emotional intelligence and what characteristics are sought after in occupational therapy fieldwork (FW) students. Please note that this information would be intended for research purposes to enable us to learn more about a topic we are passionate about and to prepare us to be better clinicians as a result of what we learn from your feedback. We are seeking your expertise about Occupational Therapy Fieldwork expectations with regards to emotional intelligence (EI). Current research in these areas substantiate that these topics are integral to FW success. We are hosting a focus group to facilitate discussion about these issues. This information will inform our FW programming and prepare for our students going into Level II FW at the University of Indianapolis School of Occupational Therapy. We are hoping to have 8-12 Level II OT FWE from a variety of Occupational Therapy practice settings. The inclusion criteria for this focus group consisting of OT FW Educators are as follows: 1. Level II FW Educator for at least one year 2. OTR for at least two years 3. Level II FW Educator works/lives within two hours of Indianapolis 4. FW Educators site has hosted UIndy OT Students, in addition to other programs, for Level II FW Fieldwork coordinators, please forward this invitation to any fieldwork educators that you feel meet this criteria if you are not able to attend yourself. There will be a meeting and follow up survey: In Person Meeting: The meeting will be held on October 21, 2019 in the UIndy Health Pavilion from 5:00pm to 7:00pm. We will send you some sample questions one week prior to the focus meeting so that you can be thinking about these questions. We will be providing a brief overview of Emotional Intelligence and the relationship to professional behaviors in students. We will audio record the session for the purpose of transcription and analyzing the results of the first focus group interview. We will not collect or use FW Educator names or places of employment. Follow-Up Survey: We will email you with the transcription of the first meeting in order to verify the accuracy of the transcription, and a second email will ask you to verify categories and results we gathered from Level II Students Emotional Intelligence the focus group. This verification of our analysis will be completed through a survey anonymously online. Please provide honest feedback on the accuracy of our findings and any suggestions you have for improving the accuracy of the results. We will share with you the results, upon the completion of this FW Program evaluation of Emotional Intelligence and Professionalism within a group OT FW Educators. Anticipated closure of this research project is December, 2020. Please respond by September 30 with your RSVP. Thank you for your time and consideration. We look forward to hearing from you. Any questions about the focus group can be directed to Kathryn Haskell at haskellk@uindy.com or 618-316-8950. Best Regards, Rebecca Barton -Rebecca A. Barton, DHS, OTR, FAOTA Associate Professor Director of Fieldwork University of Indianapolis School of Occupational Therapy rbarton@uindy.edu (317) 788-3511 Confidentiality Notice: This communication and/or its content are for the sole use of the intended recipient, and may be privileged, confidential, or otherwise protected from disclosure by law. If you are not the intended recipient, please notify the sender and then delete all copies of it. Unless you are the intended recipient, your use or dissemination of the information contained in this communication may be illegal. 39 Barton FINAL FWE Perceptions of Level II Students' EI (Barton OTD 2021) Final Audit Report 2020-12-14 Created: 2020-12-10 By: Kate DeCleene Huber (decleenek@uindy.edu) Status: Signed Transaction ID: CBJCHBCAABAAuo9Md4a1OH4teMHbef3s8rdzoG3nQaqf "Barton FINAL FWE Perceptions of Level II Students' EI (Barton OTD 2021)" History Document created by Kate DeCleene Huber (decleenek@uindy.edu) 2020-12-10 - 3:30:52 PM GMT- IP address: 69.108.47.154 Document emailed to Rebecca Barton (rbarton@uindy.edu) for signature 2020-12-10 - 3:31:56 PM GMT Document emailed to Alison Nichols (anichols@uindy.edu) for signature 2020-12-10 - 3:31:57 PM GMT Document emailed to Kate DeCleene Huber (decleenek@uindy.edu) for signature 2020-12-10 - 3:31:57 PM GMT Document e-signed by Kate DeCleene Huber (decleenek@uindy.edu) Signature Date: 2020-12-10 - 3:32:05 PM GMT - Time Source: server- IP address: 69.108.47.154 Email viewed by Alison Nichols (anichols@uindy.edu) 2020-12-10 - 4:04:42 PM GMT- IP address: 66.102.6.59 Document e-signed by Alison Nichols (anichols@uindy.edu) Signature Date: 2020-12-10 - 4:05:02 PM GMT - Time Source: server- IP address: 98.220.43.242 Email viewed by Rebecca Barton (rbarton@uindy.edu) 2020-12-10 - 4:42:25 PM GMT- IP address: 66.249.80.118 Email viewed by Rebecca Barton (rbarton@uindy.edu) 2020-12-11 - 4:49:18 PM GMT- IP address: 66.249.80.114 Email viewed by Rebecca Barton (rbarton@uindy.edu) 2020-12-14 - 4:46:26 PM GMT- IP address: 66.249.80.116 Document e-signed by Rebecca Barton (rbarton@uindy.edu) Signature Date: 2020-12-14 - 4:47:40 PM GMT - Time Source: server- IP address: 68.248.120.70 Agreement completed. 2020-12-14 - 4:47:40 PM GMT  ...

... Running head: BUILDING THE SOCS-OTS 1 Building the Screening of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS) Ally Delks, Isabel Mazanowski, Kayla Mitchell, Moriam Olorunoje, Tara Nastoff, and Cassidy Stinson University of Indianapolis Author Note Study Principal Investigator: Katie Polo, DHS, OTR, CLT-LANA Co-Investigators: Ally Delks, Isabel Mazanowski, Kayla Mitchell, Tara Nastoff, Moriam Olorunoje, & Cassidy Stinson Department and Institutional Affiliation: School of Occupational Therapy, University of Indianapolis BUILDING THE SOCS-OTS 2 Abstract Purpose: The purpose of this study was to identify the occupational performance deficits experienced by cancer survivors in order to help develop a screening tool that would indicate a need for occupational therapy services in cancer survivorship care (before, during, and after being diagnosed with cancer). Methods: The delphi technique was used to develop a screening tool aimed to determine the need for occupational therapy services among cancer survivors. Multiple rounds were used to obtain feedback from content experts to continuously refine the screening tool (Keeney, Hasson, & McKenna, 2011). Researchers gathered ideas from survivors about their occupational performance deficits as well as information from current literature to inform and build and enhance screening tool items. Results: The most prominent occupational performance deficits indicated in the screening tool included rest and sleep, sexuality and intimacy, health and wellness, and performing job duties. Discussion: The current study validated occupational performance limitations found in current oncology literature, providing further insight into the relevance of these limitations in a group of cancer survivor content experts in order to inform the SOCS-OTS. Conclusion: Researchers of this study developed items for the SOCS-OTS based on issues faced by survivors validated by experts personal experiences as well as supporting literature. This study drew on the experiences of content experts with cancer to determine occupational performance deficits that could deem occupational therapy services necessary for cancer survivors. Further development of the SOCS-OTS is necessary to create an occupation-focused screening tool. Keywords. cancer survivorship, oncology, occupational therapy, screening tool Introduction BUILDING THE SOCS-OTS 3 In 2019 there were over 16.9 million cancer survivors in the United States (National Cancer Institute, 2020; Alfano et al., 2011). It is projected that this number will increase to 22.2 million by 2030, due to advanced medical treatments thus, creating a better life prognosis (National Cancer Institute, 2020; Alfano et al., 2011). With an increase in individuals surviving cancer, researchers note that there is an increased number of long term side effects including physical, emotional, and cognitive impairments creating barriers for survivors return to daily living (Alfano et al., 2012; Morrison & Thomas, 2014; Schmidt, Wiskemann, & Steindorf, 2018). Therefore, cancer survivorship is now defined as a chronic condition (Baxter, Newman, Longpr, & Polo, 2017), because these side effects can occur for more than ten years after treatment (Ness et al., 2013). Cancer survivors have many problems with some occurring more commonly than others. Common issues found in the literature consist of fatigue, sleep disturbances/insomnia, lack of education, psychosocial issues, cognitive impairments, and returning to work/daily activities all of which can significantly impact cancer survivors occupational performance and quality of life (Zhou et al., 2017; Crist, 2013; Haun, 2014; Burg et al., 2015). Brennan, Butow, Spillane, & Boyle (2016), found at least one problem in more than 76% of cancer survivors, with the average number of problems per cancer survivor being 6.2. Literature Review Fatigue Fatigue is one of the most common problems of cancer survivors (Crist, 2013; Hauken et al., 2013; Le et al., 2017; Palmer et al., 2017; Schmidt, Wiskemann, & Steindorf, 2018; StergiouKita et al., 2016). A study conducted by Crist (2013) concluded that fatigue, aches and pains, and sleep changes are side effects that impact quality of life for cancer survivors most often. Zhou et al. (2017) highlighted how the lack of acknowledgment of factors such as education on BUILDING THE SOCS-OTS 4 diet, exercise, and sleep can lead to a range of physical consequences like fatigue and pain. Palmer et al. (2017) concluded that the quality of life of cancer survivors was lower than that of the general population due to physical side effects such as fatigue. Survivors dealing with fatigue find it to be one of the most difficult late effects because it is a different type of tired than what they experienced prior to their diagnosis, according to Hauken et al. (2013). Sleep Disturbances/Insomnia Difficulty sleeping or insomnia is another common problem that is either going untreated or is treated ineffectively (Jakobsen et al., 2018; Palmer et al., 2017; Schmidt, Wiskemann, & Steindorf, 2018; Zhou et al., 2017). Without proper care, sleep disturbances may become a chronic issue that can add to other issues such as fatigue, pain, and depression (Zhou et al., 2017). In a qualitative study looking at the everyday life of breast cancer survivors participants reported difficulty falling asleep and staying asleep which in turn reduced their energy throughout the day (Jakobsen et al., 2018). Survivors found ways to cope with their lack of energy by searching for occupations that give them a meaningful and active lifestyle (Jakobsen et al., 2018). Zhou and colleagues (2017) described how cancer diagnosis and treatments can cause pre-existing sleep problems to worsen, or give rise to new sleep disturbances, yet reported that most survivors were not receiving effective treatment for insomnia. This could be due to the healthcare providers not being trained sufficiently in evaluating and treating these types of issues (Zhou et al., 2017). Because the gap in identification and treatment of sleep disturbances in cancer patients, a more in-depth screening tool is needed to further investigate and attend to this issue for these individuals. Lack of Education BUILDING THE SOCS-OTS 5 Another common issue found in the literature is lack of education about cancer survivorship care provided to cancer survivors by health care providers (Burg et al., 2015; Hauken et al., 2013; Jakobsen et al., 2018; Morrison & Thomas, 2014). In a study by Crist (2013), only 17.8% of cancer survivors reported having received information regarding survivorfocused care post-treatment. Palmer et al. (2017) found the number of concerns for cancer survivors can be decreased if they are advised early on how to communicate their concerns. Furthermore, participants in a study conducted by Jakobsen et al. (2018) expressed concern about not having their questions answered. Survivors knew their symptoms were problematic, but they did not understand why they were happening because they were not informed (Jakobsen et al., 2018). According to Schmidt & Steindorf (2018), cancer survivors felt that their needs for counseling and support were unmet. Morrison & Thomas (2014) found that participants were left to decide when was an acceptable time to return to work, as well as what accommodations should be available to them due to lack of advice given by health care providers. According to a study by Hardcastle, Maxwell-Smith, Hagger, OConnor, and Platell (2018), there is a lack of healthy lifestyle promotion, such as healthy eating, physical activity, and strategies to stay healthy in colorectal cancer survivors following treatment. Participants desired support but received conflicting information (Hardcastle et al., 2018). A qualitative study conducted by Hauken et al. (2013) described young adult cancer survivors experiences reentering everyday life and uncovered four recurring themes among the participants: (1) lack of preparation, (2) late effects pervading entire life, (3) lack of understanding, and (4) being neither sick nor healthy (Hauken et al., 2013). The participants felt alone and unprepared, which they attributed to a lack of knowledge or communication from the physician about the issues related to their survivorship (Hauken et al., 2013). BUILDING THE SOCS-OTS 6 Although some of the disconnect could be due to lack of communication or knowledge by the physicians (Hauken et al., 2013), the divide could also be due to physicians not being sufficiently trained in treating certain needs such as sleep disorders (Zhou et al., 2017). Because there is a lack of information and education provided to cancer survivors in regards to their survivorship, they have a harder time adjusting to their life changes, previous roles, and responsibilities (Keesing, Rosenwax, & McNamara, 2016). Occupational therapy can play a role in addressing these issues; however, the findings from a retrospective cohort study imply survivors and oncology practitioners lack awareness of occupational therapy, hindering access to beneficial services for cancer survivors (Pergolotti, Cutchin, Weinberger, & Meyer, 2014). Psychosocial Issues Mental and emotional health conditions such as depression, anxiety, feeling down, and feelings of helplessness are common problems among cancer survivors in the literature (Burg et al., 2015; Crist, 2013; Hauken et al., 2013; Le et al., Mitchell, Ferguson, Gill, Paul, & Symonds, 2013; 2017; Palmer et al., 2017). Haun et al. (2014) learned that cancer survivors had a higher rate of depression and anxiety when compared to the general population. A study by Palmer et a.l (2017) found that close to one-third of their participants reported issues with anxiety and some reported concerns about experiencing depression. In a study concerning an evaluation of current referral practice, Zimmermann-Schlegel et al. (2017) found most physicians agreed there are not enough psycho-oncologic services for cancer survivors. Nearly fifteen percent of physicians evaluated reported not referring survivors to psychosocial services nor providing services themselves; although, most agreed that survivors would benefit from these services (Zimmermann-Schlegel et al., 2017). Hauken et al. (2013) and Crist et al. (2013) also concluded psychosocial issues, such as depression and anxiety, were main themes of concern in BUILDING THE SOCS-OTS 7 participants. Schmidt, Wiskemann, and Steindor (2018) documented that families, employers, peers, and friends of breast cancer survivors possess high expectations for them to quickly return to the same performance levels as before diagnosis, after minimal recovery time. This can cause stress and frustration for survivors as they may be unable to meet these expectations due to decreased cognitive and emotional function (Schmidt, Wiskemann, & Steindorf, 2018). Cognitive Impairments Cancer survivors report concerns of having cognitive impairments after treatment such as problems with concentration and memorization (Jakobsen et al., 2018; Palmer et al., 2017; Player et al., 2014). Vordermair (2009) found that following treatment 30-60% of women with breast cancer will experience chemo brain, a term used for cognitive impairments after receiving cancer treatment. Cognitive impairments negatively affected participants in areas of daily routines, employment duties, and hobbies to the point that they tended to avoid these tasks (Player et al., 2014). Although participants used strategies to deal with cognitive difficulties, none of the strategies were provided by a health professional (Player et al., 2014). The lack of ability to cope with cognitive impairments can decrease cancer survivors quality of life (Player et al., 2014). Return to Work/Daily Activities Returning to work and/or other daily activities is another area of need that is unmet in the cancer survivorship population (Crist, 2013; Hauken et al., 2013; Jakobsen et al., 2018; Le et al., 2017; Morrison & Thomas, 2014). A study by Crist (2013) found that participants diagnosed thirteen years prior to the study were still experiencing issues in work productivity caused by problems such as fatigue and cognitive impairments. Many of the participants in a study by Jakobsen et al. (2018) were unable to continue working or had to significantly cut back their BUILDING THE SOCS-OTS 8 hours. Those who were not employed prior to their diagnosis also found it difficult to return to their daily routines (Jakobsen et al., 2018). A study conducted by Le et al. (2017) concluded that being able to perform day-to-day activities such as preparing meals and light yard or housework were within the most common problems of participants. While some participants reported sadness because of the inability to fully engage in prior occupations, others noted that not working allowed them time to participate in different, but still important, occupations (Jakobsen et al., 2018). Occupational therapists can play a role in survivorship care, because it is the only profession that helps people across the lifespan to do the things they want and need to do through the therapeutic use of daily activities (occupations) (AOTA, 2019). According to Hwang, Lokietz, Lozano, and Parke (2015) only 4.5% of cancer survivors are currently referred to occupational therapy services. Research by Hwang et al. (2015) supported that cancer survivors believed occupational therapy services would have been beneficial during ongoing changes affecting quality of life following treatment. Although literature highlights many changes in quality of life, there is currently no reliable and valid occupation-focused screening tool to aid healthcare providers in referral to occupational therapy in order to address these needs. This gap in care warrants the need for a tool focusing on the problems of cancer survivors that can be addressed by occupational therapy. Thus, the purpose of this study is to develop an occupation-focused screening tool (SOCS-OTS) that will indicate a need for occupational therapy services in cancer survivorship care. Method Research Design BUILDING THE SOCS-OTS 9 The delphi technique was used to develop a screening tool aimed to determine the need for occupational therapy services among cancer survivors. The basis of the Delphi method is that a group opinion is more reliable than an individuals and is selected when subjective opinions are needed on a relevant issues (Keeney, Hasson, & McKenna, 2011). Multiple rounds are used to obtain feedback from content experts to continuously refine the screening tool (Keeney, Hasson, & McKenna, 2011). Researchers therefore gathered ideas from survivors about their occupational performance experiences in order to develop and enhance screening tool items. We used the first two steps of the guidelines in scale development to determine the specificity of the construct for the screening tool and the generation of an item pool, respectively (DeVellis, 2017). In step one, we gathered information about cancer survivors occupational performance limitations, for example fatigue, memory/cognition, anxiety/depression, and pain/peripheral neuropathy, that impact occupational participation indicating the possible need for occupational therapy services. In step two, we used a deductive approach to gather data and themes within the literature to write items for the screening tool. This approach is recommended because it involves logically acquiring evidence to support a general idea (Taylor, 2017). This was done by comparing the constructs of occupation from the Occupational Therapy Practice Framework (OTPF) with the existing literature for inclusion of items in developing the first draft of the screening tool. The Model of Occupational-Participation for Cancer Survivorship (MOPCS) helped guide the development by providing an occupational participation perspective, which facilitated a holistic approach (Loh & Jonsson, 2016). We utilized an inductive approach to analyze the data and feedback received from the questionnaire. Inductive reasoning is important to generalize statements from specific observations (Taylor, 2017) thus, we used this approach to refine the screening tool after BUILDING THE SOCS-OTS 10 receiving feedback from the content experts. Specifically, in each round it allowed for us to find redundancy of items expressed in similar content but stated in different ways. The use of the deductive and inductive approach ensures content validity within this study. The visual diagram displays the number of rounds and provides information on questionnaire formation (See Figure 1). Content Experts Thirteen content experts for the inductive round, 44 for round 1, and 45 for round 1B were recruited using snowball sampling through social media sites and personal/professional contacts, and willing national cancer support organizations. Inclusion criteria consisted of individuals: (a) diagnosed with cancer at or after 18 years of age, (b) fluent in English, and (c) have access to a computer/smartphone with the internet. Content experts varied in age, cancer type, and occupational performance limitations. Many similar studies use 15 to 35 experts to gain evidence to support claims (Gordon, 1994); therefore, we initially aimed for 45 content experts to account for attrition. This study was exempt from the process of being reviewed by the Institutional Review Board at the University of Indianapolis because it was not human subject research. Data Collection An online questionnaire platform, Qualtrics, was used to administer the questionnaire, collect data, and analyze the data. Content experts completed the questionnaire in their respective locations. Inductive Round The inductive round served as a pilot study for content experts. Ten adult cancer survivors and two occupational therapy oncology experts comprised the participants of the pilot BUILDING THE SOCS-OTS 11 study and served to inform changes for the questionnaire. The demographic questions were presented to content experts to screen for the inclusion criteria. The questionnaire was administered to ensure the content validity of the tool. The questionnaire entails questions for participants to rate occupational performance deficits they may experience, such as How severely is/has your sexual activity/intimacy been impacted? See Appendix A for the Inductive Round Screening Tool. Round 1 instrument The first round aimed to gather demographic information about the panel and determine if the items in the questionnaire were relevant by asking opinions on potential included items. The demographic questions asked experts to provide the following information: name, phone number, cancer diagnosis, and years since the most recent cancer diagnosis. Content experts were asked to respond to yes or no questions about whether their cancer has made it difficult for them to perform certain daily activities. At the end of the questionnaire, experts could provide overall feedback on the format of the screening tool. See Appendix B for Round 1 Screening Tool. Round 1B instrument The statements were re-formatted based on feedback from Round 1 from the phrase I have difficulty performing to My cancer diagnosis has made it difficult to... A priori consensus agreement was set at 80% among experts for each item to be included (Keeney et al., 2011). The content experts were also asked to provide overall feedback on the structure of the tool in an open-ended question at the end of the questionnaire. See Appendix C for Round 1B Screening Tool. Data Analysis BUILDING THE SOCS-OTS 12 Qualtrics was used to analyze demographic and item response data of the content experts by descriptive statistics. The descriptive statistics include sample size and percentage of content experts who selected each answer determining if items reached 80% consensus. Initial items were refined and reformulated based on the patterns that emerged from the thematic analysis of the open-ended questions in the Delphi Round 1. Results All content experts met the inclusion criteria for our research. Thirteen content experts participated in the inductive round, 44 content experts participated in Delphi Round 1, and 45 content experts participated in Delphi Round 1B. Throughout each round, content experts represented a variety of cancer types. The types of cancer represented in each round are displayed in Table 1. In the inductive round, content experts rated the following items as most severely impacted by their cancer diagnosis: sex and intimacy, care for others, health and wellness routines, maintaining the home, rest and sleep, leisure activities, and social participation. Content experts were then asked to provide symptoms that predominantly affected the activities above. According to the content experts responses on the questionnaire, these activities were affected predominantly by fatigue and pain, however, anxiety and depression also impacted multiple activities. Results from the inductive round are displayed in Table 2. In the Delphi Round 1, content experts answered from a nominal scale of yes or no if the item was relevant to difficulties they experienced when performing occupations during their cancer survivorship. After Round 1, no items met a priori of 80% consensus; however, we found the following items were most relevant to content experts due to receiving 40% or higher BUILDING THE SOCS-OTS 13 consensus: rest and sleep, sex and intimacy, and work performance. The next most relevant items reached between 30% and 39% consensus: maintaining the home, meal preparation, shopping, caring for others, transportation, and health and wellness management. Results from the Delphi Round 1 are displayed in Table 3. We used a thematic analysis from the open-ended questions in the Delphi Round 1 to inform changes to the tool that included adding education as an item, breaking down items into more specific tasks, the wording of the items, and the format of the tool. In the Delphi Round 1B, no items reached a priori consensus of 80%; however, several items reached 40% or higher consensus: engaging in sexual activity with myself or a partner, maintaining closeness and intimacy with a romantic partner, maintaining health and wellness routine, rest and sleep, and performing job duties at prior level of expectation. The items that reached between 30% and 39% consensus include: providing care for other people and/or pets, doing yard work, fully returning to work, and participating in leisure activities. Results from the Delphi Round 1B are displayed in Table 4. Discussion The purpose of this study was to identify the occupational performance deficits experienced by cancer survivors in order to help develop a screening tool that would indicate a need for occupational therapy services in cancer survivorship care. After reviewing the literature, the most common performance difficulties of survivors included fatigue, sleep disturbances/insomnia, lack of education, psychosocial issues, cognitive impairments, and returning to work/daily activities. We theorized that cancer survivors would benefit from the development of an occupational therapy oncology screening tool. We began phase one for BUILDING THE SOCS-OTS 14 developing a screening tool that would indicate a need for occupational therapy services in cancer survivorship care plans. Currently, there is a lack of known, reliable, and valid occupational therapy screening tools for cancer survivors. Funk & Lackie (2017) conducted a study to expand screening of occupational therapy services in oncology, yet the researchers only utilized a deductive approach from literature to develop their tool; thus, they did not seek critical feedback from cancer survivors (Funk & Lackie, 2017). Although we appreciate Funk & Lackies (2017) results as they aid greatly in the expansion of screening tools in oncology, their research was limited due to the lack of validity and reliability that may have been gained through use of blending inductive and deductive approaches. According to Boyatzis, (1998), Crabtree & Miller, (1999), and Day & Bobeva, (2005), using a deductive approach alone isnt always sufficient for high validity and reliability due to the strong support researchers give to the use of blending inductive and deductive approaches in the development of screening tools. Therefore, we used both a deductive and inductive approach to develop and refine the tool by using content experts to increase rigor and validity (Day & Bobeva, 2005) The current study validated performance limitations found in current oncology literature and provided further insight into the relevance of these limitations in a panel of cancer survivors. Throughout literature, cancer survivors report occupational performance deficits in rest and sleep, physical wellness, work, sexuality and intimacy, and in daily activities (Jakobsen et al., 2018; Hardcastle, Maxwell-Smith, Hagger, OConnor, and Platell, 2018; Palmer et al., 2017; Schmidt, Wiskemann, & Steindorf, 2018; Zhou et al., 2017). Our study findings aligned with the literature as the cancer survivor content experts experience difficulties with rest and sleep (Jakobsen et al., 2018; Palmer et al., 2017; Schmidt, Wiskemann, & Steindorf, 2018; Zhou et al., BUILDING THE SOCS-OTS 15 2017) and difficulty returning to work (Jakobsen et al., 2018), therefore, these items should still be included in the SOCS-OTS. Although there is literature to support issues related to sexuality and intimacy in survivorship (Jun et al., 2011; Hwang, Lokietz, Lozano, & Parke, 2015), researchers show that sexuality and intimacy are areas of practice that therapists do not feel comfortable discussing (Areskoug-Josefsson et al., 2016). Content experts reported sexuality and intimacy as one of their top performance deficits supporting the inclusion of the sexuality and intimacy items in the SOCS-OTS. Our content experts reported difficulty maintaining wellness routines and participating in leisure activities. Previous researchers have found a correlation between leisure activities and increased quality of life in cancer survivors (Schlesinger et al., 2014), therefore, supporting the inclusion of this item on the SOCS-OTS. Our content experts also reported difficulty caring for others which is supported by past researchers. Implications for future studies include completion of the Delphi method (Rounds 2-4) to continue with refinement of the screening tool and development of a Likert scale for rating ability of performance. Additionally, further research is necessary to determine reliability and validity of the tool. (Muriel et al., 2012). As a result, this item was important to include on our screening tool. This study provides relative information on the occupational performance concerns of cancer survivors that can be applied to an occupational therapy screening tool. Limitations Study limitations in the development of the SOCS-OTS are present. The panel consisted of over 50% breast cancer survivors, which could create a bias towards occupational performance deficits specific to that cancer type. We were not able to verify inclusion of the screening tool items by traditional consensus value of 80% with the content experts, however, BUILDING THE SOCS-OTS 16 our results support inclusion of the items by aligning content experts occupational performance experiences with those found in literature. Conclusion This study drew on the experiences of content experts with cancer to determine occupational performance deficits that could deem occupational therapy services necessary for cancer survivors. This entailed a deductive and inductive approach that aligned the literature on the issues of our content experts. Our findings indicate that some survivors have difficulty engaging in sexual activity and intimacy, maintaining health and wellness routines, rest and sleep, and performing job duties at prior levels of expectation. Although we fulfilled phase one of the Delphi method, further development is necessary including reaching item consensus through content experts of oncology occupational therapists and researchers to finalize an occupational therapy screening tool. It is our hope that once the Delphi process is completed and the screening tool is validated, the SOCS-OTS will aid in the referral to the emerging practice of occupational therapy in oncology. BUILDING THE SOCS-OTS 17 References American Cancer Society. Cancer Facts & Figures 2018. American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. Areskoug-Josefsson, K., Larsson, A., Gard, G., Rolander, B., & Juuso, P. (2016). Health care students attitudes towards working with sexual health in their professional roles: Survey of students at nursing, physiotherapy and occupational therapy programmes. 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Scale development: Theory and applications (3rd ed.). Newbury Park: Sage. BUILDING THE SOCS-OTS 18 Funk, C., & Lackie, J. (2017). Expanding the role of occupational therapy in oncology: An introduction to the oncology occupational therapy screening tool and occupational therapy & cancer education guide. Gordon, T. J. (1994). The Delphi Method in futures research methodology. AC/UNC Millennium Project. Hauken, M. A., Larsen, T. M. B., & Holsen, I. (2013). Meeting reality: Young adult cancer survivors experiences of reentering everyday life after cancer treatment. Cancer Nursing, 36(5), E17E26. https://doi.org/10.1097/NCC.0b013e318278d4fc Hardcastle, S. J., MaxwellSmith, C., Hagger, M. S., O'Connor, M., & Platell, C. (2018). Exploration of information and support needs in relation to health concerns, diet and physical activity in colorectal cancer survivors. European journal of cancer care, 27(1), e12679. Hwang, E. J., Lokietz, N. C., Lozano, R. L., & Parke, M. A. (2015). Functional deficits and quality of life among cancer survivors: Implications for occupational therapy in cancer survivorship care. American Journal of Occupational Therapy, 69(6), 6906290010p1. https://doi.org/10.5014/ajot.2015.015974 Jakobsen, K., Magnus, E., Lundgren, S., & Reidunsdatter, R. J. (2018). Everyday life in breast cancer survivors experiencing challenges: A qualitative study. Scandinavian Journal of Occupational Therapy, 25(4), 298307. https://doi.org/10.1080/11038128.2017.1335777 Jun, E. Y., Kim, S., Chang, S. B., Oh, K., Kang, H. S., & Kang, S. S. (2011). The effect of a sexual life reframing program on marital intimacy, body image, and sexual function among breast cancer survivors. Cancer Nursing, 34(2), 142-149. BUILDING THE SOCS-OTS 19 Keeney, S., Hasson, F., & McKenna, H. P. (2011). The Delphi technique in nursing and health research. Chichester, West Sussex: Wiley-Blackwell. Le, M.-N., Nguyen, G. T., Pan, Z., Maglalang, D. D., Butt, F., Bautista, R., Barg, F. K. (2017). Unmet needs of Asian American and Pacific Islander cancer survivors. Journal of Cancer Education, 32(2), 374381. https://doi.org/10.1007/s13187-015-0952-7 Loh, S.Y., & Jonsson, H. (2016). Cancer survivorship care: A perspective from an occupationalparticipation approach. Journal of Cancer Science & Therapy, 8, 179-184. https://doi.org/10.4172/1948-5956.1000411 Morrison, T. L., & Thomas, R. L. (2014). Survivors experiences of return to work following cancer: A photovoice study: Expriences vcues par des survivantes un cancer face leur retour au travail : Une tude photovoice. Canadian Journal of Occupational Therapy, 81(3), 163172. https://doi.org/10.1177/0008417414534398 Muriel, A. C, Moore, C. W., Baer, L., Park, E. R., Kornblith, A. B., Pirl, W., & Rauch, P. K. (2012). Measuring psychosocial distress and parenting concerns among adults with cancer: The Parenting Concerns Questionnaire. Cancer, 118(22), 5671-5678 National Cancer Institute. (2020, September 25). Cancer Statistics. Cancer.gov. https://www.cancer.gov/about-cancer/understanding/statistics Occupational Therapy Practice Framework: Domain and Process (3rd Edition). (2017). American Journal of Occupational Therapy, 68(Supplement_1), S1S48. https://doi.org/10.5014/ajot.2014.682006 Palmer, S. C., Stricker, C. T., DeMichele, A. M., Schapira, M., Glanz, K., Griggs, J. J., & Jacobs, L. A. (2017). The use of a patient-reported outcome questionnaire to assess cancer survivorship concerns and psychosocial outcomes among recent survivors. Supportive BUILDING THE SOCS-OTS 20 Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 25(8), 24052412. https://doi.org/10.1007/s00520-017-3646-3 Parry, C., Kent, E. E., Mariotto, A. B., Alfano, C. M., & Rowland, J. H. (2011). Cancer survivors: a booming population. Cancer Epidemiology and Prevention Biomarkers, 20(10). https://doi.org/10.1158/1055-9965.EPI-11-0729 Pergolotti, M., Cutchin, M.P., Weinberger, M., Meyer, A. (2014). Occupational therapy use by older adults with cancer. American Journal of Occupational Therapy, 68(5), 597607. https://doi.org/10.5014/ajot.2014.011791 Player, L., Mackenzie, L., Willis, K., & Loh, S. Y. (2014). Womens experiences of cognitive changes or chemobrain following treatment for breast cancer: A role for occupational therapy? Australian Occupational Therapy Journal, 61(4), 230240. https://doi.org/10.1111/1440-1630.12113 Salant, P., & Dillman, D. A. (1995). How to conduct your own survey. New York: Wiley. Schlesinger, S., Walter, J., Hampe, J., von Schonfels Witigo, Hinz, S., Kuchler Thomas, Nothlings Ute. (2014). Lifestyle factors and health-related quality of life in colorectal cancer survivors. Cancer Causes & Control : An International Journal of Studies of Cancer in Human Populations, 25(1), 99110.https://doi.org/10.1007/s10552-013-0313-y Schmidt, M.E., Wiskemann, J., & Steindorf, K. (2018). Quality of life, problems, and needs of disease-free breast cancer survivors 5 years after diagnosis. Quality of Life Research, 27(8), 2077-2086. Taylor, R. (2017). Kilehofners research in occupational therapy: Methods of inquiry for enhancing practice. Philadelphia, PA: F.A. Davis Company. BUILDING THE SOCS-OTS 21 Zhou, E. S., Partridge, A. H., Syrjala, K. L., Michaud, A. L., & Recklitis, C. J. (2017). Evaluation and treatment of insomnia in adult cancer survivorship programs. Journal of Cancer Survivorship, 11(1), 7479. https://doi.org/10.1007/s11764-016-0564-1 BUILDING THE SOCS-OTS 22 Table 1 Percentage of Content Experts with Each Type of Cancer Inductive Approach Delphi Round 1 Round 1B Type n (%) n (%) n (%) Blood 2 (15) 5 (10) 3 (5) Brain 2 (15) 0 (0) 0 (0) Breast 4 (31) 29 (54) 33 (59) GI 3 (23) 2 (4) 2 (4) Gynecological 2 (15) 3 (6) 3 (5) Head/Neck 2 (15) 2 (4) 1 (2) Lung 2 (15) 0 (0) 0 (0) Prostate 2 (15) 3 (6) 3 (5) Skin 3 (23) 4 (8) 5 (9) Soft Tissue Sarcoma 2 (15) 1 (2) 1 (2) Thyroid 2 (15) 3 (6) 3 (5) Urinary/Renal 3 (23) 0 (0) 1 (2) Other 1 (8) 1 (2) 1 (2) Note. The total sample size (N) for the Inductive Approach, Delphi Round 1, and Round 1B are N= 13, N=44, and N=45 respectively. n = number of content experts with each type of cancer, (%) = the percentage of content experts with each corresponding cancer type. Content experts could select more than one cancer type; one person could be contributing to multiple cancer type percentages. BUILDING THE SOCS-OTS 23 Table 2 Inductive phase: Occupations Most Severely Impacted by Cancer Diagnosis Occupation Extremely (n) Very (n) Moderately (n) Slightly (n) N/A (n) Self-care 1 1 0 4 7 Sexual Activity/Intimacy 2 1 0 3 5 Care for Others 0 2 1 3 6 Transportation 0 1 1 2 7 Managing Finances 0 0 0 2 10 Health and Wellness Routines 1 1 2 2 6 Maintaining the Home 1 2 1 2 6 Meal Preparation 0 2 1 1 8 Shopping 1 0 1 1 9 Rest and Sleep 0 3 2 1 6 Job Performance 0 1 2 2 7 Leisure Activities 1 2 2 1 6 Social Participation 0 2 1 3 6 Note. The total sample size (N) for the Inductive Approach, N= 13. (n) = number of content experts indicating Extremely, Very, Moderately, Slightly, or N/A. BUILDING THE SOCS-OTS 24 Table 3 Delphi Round 1: Relevancy of Occupations to Occupational Performance Difficulties Yes No n (%) n (%) Self-care 12 (27) 32 (73) Maintaining Home 17 (39) 27 (61) Meal Preparation 14 (32) 30 (68) Shopping 17 (39) 27 (61) Rest and Sleep 24 (55) 20 (45) Caring for Others 15 (34) 29 (66) Transportation 13 (30) 31 (70) Managing Finances 5 (11) 39 (89) Health/Wellness Routines 15 (34) 29 (66) Sex/Intimacy 18 (41) 26 (59) Work Performance 18 (41) 26 (59) Leisure Activities 12 (27) 32 (73) Social Participation 12 (27) 32 (73) Occupation Note. The total sample size (N) for the Delphi Round 1, N=44. n = number of content experts indicating yes or no (%) = the percentage of total content experts from Round 1. BUILDING THE SOCS-OTS 25 Table 4 Delphi Round 1B Yes No n (%) n (%) Bathe/Shower 6 (13) 39 (87) Engage in Sexual Activity 21 (48) 23 (52) Maintain Intimacy 18 (41) 25 (59) Care for Others 15 (33) 30 (67) Move from One Position/Place to Another 9 (20) 36 (80) Manage Finances 5 (11) 40 (89) Maintain Wellness Routine 22 (49) 23 (51) Manage Medications 5 (11) 40 (89) Clean my Home 13 (29) 32 (71) Do Yard Work 14 (31) 31 (45) Home Maintenance/Repairs 13 (29) 32 (71) Meal Preparation 13 (29) 32 (71) Grocery Shop 13 (29) 32 (71) Rest/Sleep 23 (51) 22 (49) Fully Return to Work 16 (36) 28 (64) Perform Job Duties at Prior Level 18 (41) 26 (59) Engage in Educational Activities 10 (22) 35 (78) Participate in Leisure Activities 15 (33) 30 (67) Socialize with Family/Friends 12 (27) 32 (73) Participate in Community Events 11 (25) 33 (75) Occupation Note. The total sample size (N) for the Delphi Round 1B, N=45. n = number of content experts indicating yes or no (%) = the percentage of total content experts from Round 1B. BUILDING THE SOCS-OTS 26 Figure 1 Deductive Approach OTPF framework & existing literature to inform item development Formulate inclusion criteria for participants Preparing set of items for Inductive Approach Collect qualitative data for questionnaire Alter the design and item structure based on participant Delphi Round 1 and 1B Sample size: 44 and 45 respectively Objective: To determine the significance and feasibility of the items included from the deductive and inductive approaches. Data collected: Nominal scale of yes or no was used with additional space for feedback on each item. Qualtrics email reminders Major revisions done to the item structure of the questionnaire as per recommendations from participants Decision on Delphi progress Analyze the items return from Round 1 and 1B Subjective misinterpretation from the participants led to termination of the Delphi questionnaire BUILDING THE SOCS-OTS 27 Appendix A Inductive Round: Cancer Survivor Survey Start of Block: Demographics Q1.1 Are you fluent in English? o Yes (1) o No (2) Skip To: End of Survey If Are you fluent in English? = No Q1.2 Current age o 18-35 (1) o 36-55 (2) o 55+ (3) Q1.3 Gender o Male (1) o Female (2) o Other, please specify (3) ________________________________________________ BUILDING THE SOCS-OTS Q1.4 Ethnicity o American Indian or Alaskan Native (1) o Asian (2) o Black or African American (3) o Hispanic/Latino (4) o White (5) o Two or more ethnicities (6) o I prefer not to answer (7) Q1.5 Age of initial diagnosis o 18-35 (1) o 36-55 (2) o 55+ (3) 28 BUILDING THE SOCS-OTS 29 Q1.6 Please indicate the type of cancer(s) you were diagnosed with by selecting which stage(s) with which you were diagnosed (check all that apply throughout your survivorship journey) Does Noninvasive not Stage Stage Stage Stage Ductal Carcinoma apply 1 (13) 2 (5) 3 (9) 4 (10) (DCIS) *breast (4) cancer only (11) Blood related cancers (i.e. Leukemia, Lymphoma, Multiple Myeloma) (1) Brain cancer (2) Breast cancer (3) Gastrointestinal cancers (i.e. oesophagus, gallbladder, biliary tract, liver, pancreas, stomach, small/large intestine, rectum, anal) (4) Gynecological cancer (5) Head and neck cancers (i.e. larynx, throat, lips, mouth, nose, salivary glands) (6) Lung cancer (7) Prostate cancer (8) Skin cancer (9) Soft tissue sarcoma (i.e. muscle, tendon, fat, nerves, blood vessels, lymph) (10) Thyroid cancer (11) Urinary and Renal cancers (i.e. bladder and kidney) (13) Other, please specify (12) BUILDING THE SOCS-OTS 30 Q1.7 What treatment have you undergone at any point in your cancer survivorship journey? (check all that apply) Surgery (1) Chemotherapy (2) Radiation therapy (3) Immunotherapy (4) Hormone Therapy (5) Stem Cell Transplant (6) Targeted Therapy (7) Precision Medicine (8) Complimentary or Alternative medicine (11) None (10) Other, please specify (9) ________________________________________________ Q1.8 Are you currently undergoing treatment? o Yes (1) o No (2) Q1.9 Have you ever received occupational therapy services in relation to your cancer survivorship? o Yes (1) o No (2) Q2.1 How severely is/has your ability to perform self-care activities been impacted? (i.e. grooming, bathing/showering, toileting) BUILDING THE SOCS-OTS 31 *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.4 If How severely is/has your ability to perform self-care activities been impacted? (i.e. grooming, b... = Does not apply Q2.2 Please select what factors you feel are impacting or have impacted each activity (this can range from slightly impacted to very seriously impacted) (check all that apply). *Please answer according to the time in your survivorship that was most severely impacted. Pain/Peripher Fatigu Memory/Cognitio Anxiety/Depressio Othe al neuropathy e (1) n (2) n (3) r (5) (4) Bathing/Showerin g (1) Toileting (2) Dressing (3) Functional mobility (moving from one position or place to another, includes walking during daily activities and transportation of objects) (4) Grooming (5) BUILDING THE SOCS-OTS 32 Skip To: Q2.3 If Please select what factors you feel are impacting or have impacted each activity (this can range... = Other Q2.3 If other please specify. ________________________________________________________________ Page Break Q2.4 How severely is/has your sexual activity/intimacy been impacted? *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.6 If How severely is/has your sexual activity/intimacy been impacted? *Please answer according to the... = Does not apply Q2.5 What factors do you feel are impacting or have impacted your limitations in sexual activity/intimacy? (check all that apply) BUILDING THE SOCS-OTS 33 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Medical treatment (surgery, medication, etc.) (6) Other, please specify (5) ________________________________________________ Q2.6 How severely is/has your ability to provide care for others been impacted? (i.e. children, spouse, pets, etc.) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.8 If How severely is/has your ability to provide care for others been impacted? (i.e. children, spouse... = Does not apply Q2.7 What factors do you feel are impacting or have impacted your ability to provide care for others? (check all that apply) BUILDING THE SOCS-OTS 34 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.8 How severely is/has your use of transportation and moving around in the community been impacted? (i.e. driving, walking, biking, use of public transportation) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.10 If How severely is/has your use of transportation and moving around in the community been impacted?... = Does not apply Q2.9 What factors do you feel are impacting or have impacted your use of transportation? (check all that apply) BUILDING THE SOCS-OTS 35 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Medical treatment (surgery, medication, etc.) (6) Other, please specify (5) ________________________________________________ Q2.10 How severely is/has managing your finances been impacted? (i.e. processes of paying bills, budgeting, simple money transaction) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.12 If How severely is/has managing your finances been impacted? (i.e. processes of paying bills, budget... = Does not apply Q2.11 What factors do you feel are impacting or have impacted your ability to manage your finances? (check all that apply) BUILDING THE SOCS-OTS 36 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.12 How severely is/has developing, managing, and maintaining routines for health and wellness promotion been impacted? (i.e. physical fitness, nutrition, medication management) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.15 If How severely is/has developing, managing, and maintaining routines for health and wellness promot... = Does not apply Q2.13 Please select what factors you feel are impacting or have impacted each activity. (this can range from slightly impacted to very seriously impacted) (check all that apply) BUILDING THE SOCS-OTS 37 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue Memory/Cognition Anxiety/Depression Pain/Peripheral Other (1) (2) (3) nueropathy (4) (5) Physical fitness (1) Nutrition (2) Medication management (3) Skip To: Q2.15 If Please select what factors you feel are impacting or have impacted each activity. (this can range... != Other Q2.14 If other please specify. ________________________________________________________________ Q2.15 How severely is/has your ability to maintain your home been impacted? (i.e. household cleaning, laundry, yard work, gardening) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.17 If How severely is/has your ability to maintain your home been impacted? (i.e. household cleaning, l... = Does not apply Q2.16 What factors do you feel are impacting or have impacted your ability to maintain your home? (check all that apply) BUILDING THE SOCS-OTS 38 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.17 How severely is/has your ability to plan, prepare, serve, and/or clean up meals been impacted? *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.19 If How severely is/has your ability to plan, prepare, serve, and/or clean up meals been impacted? *... = Does not apply Q2.18 What factors do you feel are impacting or have impacted your ability to plan, prepare, serve, and/or clean up meals? (check all that apply) BUILDING THE SOCS-OTS 39 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.19 How severely is/has shopping been impacted? (i.e. preparing shopping list, selecting, purchasing, and/or transporting items) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.21 If How severely is/has shopping been impacted? (i.e. preparing shopping list, selecting, purchasing,... = Does not apply Q2.20 What factors do you feel are impacting or have impacted your ability to shop? (check all that apply) BUILDING THE SOCS-OTS 40 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.21 How severely is/has your rest, sleep preparation, and/or sleep participation been impacted? *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.23 If How severely is/has your rest, sleep preparation, and/or sleep participation been impacted? *Plea... = Does not apply Q2.22 What factors do you feel are impacting or have impacted your rest, sleep preparation, and/or sleep participation? (check all that apply) BUILDING THE SOCS-OTS 41 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.23 How severely is/has your job performance been impacted? *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.25 If How severely is/has your job performance been impacted? *Please answer according to the time in y... = Does not apply Q2.24 What factors do you feel are impacting or have impacted your job performance? (check all that apply) BUILDING THE SOCS-OTS 42 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.25 How severely is/has your participation in leisure activities been impacted? (i.e. hobbies and interests) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.27 If How severely is/has your participation in leisure activities been impacted? (i.e. hobbies and int... = Does not apply Q2.26 What factors do you feel are impacting or have impacted your participation in leisure activities? (check all that apply) BUILDING THE SOCS-OTS 43 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.27 How severely is/has your social participation been impacted? (i.e. participating in activities in the community or with family and friends) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: End of Survey If How severely is/has your social participation been impacted? (i.e. participating in activities in... = Does not apply Q2.28 What factors do you feel are impacting or have impacted your social participation? (check all that apply) BUILDING THE SOCS-OTS 44 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ BUILDING THE SOCS-OTS 45 Appendix B Screen of Cancer Survivorship - OT Delphi: Round 1 Start of Block: Demographics Q1 In the first round of this questionnaire, investigators are seeking to understand the relevance of these items in relation to your cancer survivorship experiences. Please complete the demographic questions including your full name and phone number at the beginning of the questionnaire. It is important that the investigators can identify your responses in case we need to reach out to you for further questions. Q2 First and last name ________________________________________________________________ Q3 Phone Number ________________________________________________________________ BUILDING THE SOCS-OTS 46 Q4 Please indicate the type of cancer(s) you were diagnosed with (check all that apply throughout your survivorship journey) Blood related cancers (i.e. Leukemia, Lymphoma, Multiple Myeloma) (1) Brain cancer (2) Breast cancer (3) Gastrointestinal cancers (i.e. oesophagus, gallbladder, biliary tract, liver, pancreas, stomach, small/large intestine, rectum, anal) (4) Gynecological cancer (5) Head and neck cancers (i.e. larynx, throat, lips, mouth, nose, salivary glands) (6) Lung cancer (7) Prostate cancer (8) Skin cancer (9) Sarcoma (i.e. bone or soft tissue such as muscle, tendon, fat, nerves, blood vessels) (10) Thyroid cancer (11) Urinary and Renal cancers (i.e. bladder and kidney) (13) Other, please specify (12) ________________________________________________ BUILDING THE SOCS-OTS 47 Q5 How many years has it been since your most recent cancer diagnosis? o Less than 1 year (1) o 1 year (2) o 2 years (3) o 3 years (4) o 4 years (5) o 5 years (6) o 6 years (7) o 7 years (8) o 8 years (9) o 9 years (10) o 10+ years (11) End of Block: Demographics Start of Block: Survey Q6 The purpose of this questionnaire is to understand if you have had any trouble engaging in daily activities during your survivorship (from time of diagnosis to present day). While filling out the questionnaire please indicate "Yes, this item is relevant to a concern I have had at some point in my survivorship journey" if you have ever had an issue with the activity listed or "No, this item is not relevant" if you have never had issues performing that activity. At the end of the questionnaire you will have the opportunity to provide overall feedback for anything else you feel should be included. Click the next button to get started! BUILDING THE SOCS-OTS 48 Q7 I have difficulty performing self-care activities (i.e. grooming, bathing/showering, toileting). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (7) ________________________________________________ Q8 I have difficulty maintaining my home (i.e. household cleaning, laundry, yard work, gardening). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (6) Please provide item specific feedback here (7) ________________________________________________ Q9 I have difficulty planning, preparing, serving, and/or cleaning up meals. Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q10 I have difficulty shopping (i.e. preparing shopping list, selecting, purchasing, and/or transporting items). BUILDING THE SOCS-OTS 49 Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q11 I have difficulty engaging in rest and sleep. Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q12 I have difficulty providing care for others (i.e. children, spouse, pets, etc.). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q13 I have difficulty using transportation and moving around in the community (i.e. driving, walking, biking, use of public transportation). BUILDING THE SOCS-OTS 50 Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q14 I have difficulty managing finances (i.e. processes of paying bills, budgeting, simple money transaction). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ BUILDING THE SOCS-OTS 51 Q15 I have difficulty developing, managing, and maintaining routines for health and wellness promotion (i.e. physical fitness, nutrition, medication management). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q16 I have difficulty engaging in sexual activity and intimacy. Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q17 I am having difficulty returning to work or performing my job duties. Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ BUILDING THE SOCS-OTS 52 Q18 I have difficulty participating in leisure activities (i.e. hobbies and interests). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q19 I have difficulty engaging in social participation (i.e. participating in activities in the community or with family and friends). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q20 Please provide overall feedback or suggested changes for the tool. ________________________________________________________________ BUILDING THE SOCS-OTS 53 Appendix C Cancer Survivor Questionnaire: Delphi Round 1B Start of Block: Survey Q1 First and last name ________________________________________________________________ Q2 Phone Number ________________________________________________________________ BUILDING THE SOCS-OTS 54 Q7 Please indicate the type of cancer(s) you were diagnosed with (check all that apply throughout your survivorship journey) Blood related cancers (I.e. leukemia, lymphoma, multiple myeloma) (1) Brain cancer (4) Breast cancer (5) Gastrointestinal cancers (I.e. oesophagus, gall bladder, biliary tract, liver, pancreas, stomach, small/large intestine, rectum, anal) (6) Gynecological cancer (7) Head and neck cancer (I.e. larynx, throat, lips, mouth, nose, salivary glands) (8) Lung cancer (9) Prostate cancer (2) Skin cancer (3) Sarcoma (I.e. bone or soft tissue such as muscle, tendon, fat, nerves, blood vessels) (10) Thyroid cancer (11) Urinary and renal cancers (I.e. bladder and kidney) (12) Other, please specify (13) ________________________________________________ BUILDING THE SOCS-OTS Q8 How many years has it been since your most recent cancer diagnosis? o Less than 1 year (1) o 1 year (2) o 2 years (3) o 3 years (4) o 4 years (5) o 5 years (6) o 6 years (7) o 7 years (8) o 8 years (9) o 9 years (10) o 10+ years (11) 55 BUILDING THE SOCS-OTS Q4 My cancer has made it difficult to... 56 BUILDING THE SOCS-OTS 57 Yes (1) No (2) Move from one position or place to another (5) o o o o o o o o o o Manage finances (i.e. processes of paying bills, budgeting, simple money transaction) (6) o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o Bathe and/or shower (1) Engage in sexual activity with a partner or myself (2) Maintain closeness and intimacy with a romantic partner (3) Provide care for other people and/or pets (4) Maintain my exercise routine and physical fitness (7) Manage my medications (8) Clean my home (9) Do my yard work (10) Perform home maintenance and repairs (11) Plan, prepare, serve, and/or clean up meals. (12) Grocery shop (13) Rest and sleep (14) Fully return to work (15) Perform my job duties at prior level of expectation (16) Engage in educational activities (17) Participate in leisure activities (18) Socialize with my family and friends (19) Participate in community events (20) BUILDING THE SOCS-OTS Q6 If you have any feedback on the format (wording, clarity, structure, etc.) of the questionnaire, please provide it below. ________________________________________________________________ End of Block: Survey 58  ...

... 1 NATURE-BASED PROGRAMMING Title: Implementation and Introduction to a Nature-Based Mindfulness Grounding & Meditation Program Ally Delks, 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: Taylor McGann, OTR, OTD 2 NATURE-BASED PROGRAMMING Abstract Introduction: Current societal norms including lack of outdoor activity, greater sedentary lifestyles, and disconnection from nature alongside indoctrinated information and unnatural medical treatments are negatively impacting health, quality of life, and the human experience (Bento & Dias 2017). The profession of occupational therapy is dedicated to having evidencebased research as a foundation to guide our practice, therefore, we must expand our knowledge and continue researching holistic and free/low-cost interventions that may not be well-known or common within the medical model or settings that therapists typically practice in. This review and program protocol showcases the physical, emotional, and psychological changes seen in the individuals participating in a nature-based group healing program. Methods: Eight individuals participated in the Nature-based Grounding and Meditation program after a thorough needs assessment. The program was structured to focus on improvement in feelings of dis-ease, stress, pain, and self-awareness. There were four 1-hour sessions that included the following holistic interventions: grounding/earthing, journaling, meditation, breathwork, and education. Results: The outcome measures indicated significant improvements in feelings of ease, stress, pain, and/or self-awareness following the sessions. Themes found within the qualitative data include feeling better, feeling relaxed, being able to enjoy the weather/fresh air, and noticing the importance of taking time out of the workday for mental health & self-care. Discussion: The results of this program indicate that Nature-based mindfulness practices are beneficial for individuals suffering from physical and/or mental conditions and can be used as an occupational therapy intervention in a variety of settings. Keywords: occupational therapy, nature exposure, vitamin D, mindfulness, meditation, grounding, breathwork, occupational therapy, quality of life NATURE-BASED PROGRAMMING 3 Implementation and Introduction to a Nature-Based Mindfulness Grounding & Meditation Program Due to the indoctrinated information and standard medical treatments based on manmade medications and technology, we as humans have lost our connection to the natural world of healing. Sadly, there is a lack of information being taught to medical students about holistic treatments and the impact that diet, mindfulness, and connection to nature can have on medical conditions and the human body in general. According to Bento & Dias (2017), the current societal norms are negatively affecting human experiences due to the decreasing amount of outdoor activity, greater sedentary lifestyles, and in general, disconnection from nature. Unfortunately, significant profits are made in the medical industry off of those who suffer from disease and illness. Essentially a patient cured is a patient lost, therefore eliminating the profits gained from that individual. Instead of analyzing the root cause of illness and condition, medical professionals are often taught to manage symptoms through prescription drugs instead of suggesting natural & free interventions and lifestyle changes that could provide cures for these issues. Oschman, Chevalier, & Ober (2015) state that unless medical researchers consider energetics like physics, biophysics, and quantum physics, cures for some of the most severe health problems will remain elusive. The relationship between medicine and energetics will be further explained when reviewing the findings of multiple studies that examine the health benefits of grounding/earthing, sunlight exposure, breathwork, and meditation/mindfulness. As occupational therapists, it is our job to assure that our patients treatment protocols and interventions are client-centered and done in the best interest of the clients health and overall quality of life. Because the profession of occupational therapy is dedicated to having a 4 NATURE-BASED PROGRAMMING solid foundation built on evidence-based research to guide our practice, we must expand our knowledge and continue researching holistic and free/low-cost interventions that may not be well-known or common within the medical model or setting (AOTA). Based on research, there is a desperate need to reconnect humans to nature, and this starts by teaching our clients the benefits that come from being in the outdoors. This review and program protocol will showcase the physical, emotional, and psychological changes seen in the individuals participating in a nature-based group healing program. The Occupational Therapy theory and model that was used to guide this research and program protocol is the KAWA model. The KAWA model supports the role of OT in a naturebased setting as it focuses on improving interconnectedness & harmony between nature, the environment, and the person, to enhance life flow and improve quality of life (Cole & Tufano, 2020). This model is used as the foundation in enabling people from all streams of life to engage and participate in activities and processes of daily living that matter (Cole & Tufano, 2020). The ultimate goal for the KAWA model is to have a life flow with unimpeded connectedness to nature, others, and deity (Cole & Tufano, 2020). Because this model focuses so much on nature, harmony, and interconnectedness, it fits perfectly as a guide to introduce new healing methods and nature-based interventions to the profession of OT. Methods Four individuals participated in the Nature-Based Mindfulness program, including three young men and one young woman ages 17-21. The participants were of varying ethnic groups (some of mixed races), including Black, Burmese, El Salvadoran, Mexican, and Puerto Rican. The only inclusion criteria were that the participants had already enrolled in the FEED (Farming, Employment, Education, and Distribution) program at the Flanner House. 5 NATURE-BASED PROGRAMMING An assessment was performed to identify the needs of the FEED program employees. The assessment was done via informal interviews and observation. The interviewees included the Flanner House Deputy Director, the FEED Program Directors, and the FEED Program Employees themselves. It was determined that there is a need for a Mindfulness program that focuses on overall healing and self-improvement. The primary needs of the participants included stress reduction, self-awareness, attentiveness, confidence, pain reduction, and trauma release. The mindfulness program consisted of five one-hour sessions, once per week. The program was administered in a grassy and excluded area in the park across the street from the Flanner House. Quantitative and qualitative data were collected to measure the effects of the program. A Likert scale was utilized before and after each session to measure the program's immediate effects. Participants were asked to select a number 1 through 5 based on their current feelings of 4 different items, including ease, stress, pain, and self-awareness. Descriptive statistics were used to analyze the data collected from the Likert scale questions. For the qualitative data, the participants were asked to describe their feelings of ease, stress, pain, and self-awareness in one to two sentences before each program. This information was analyzed by identifying themes in the responses at the beginning of the overall program compared to the comprehensive program responses. Feedback from the participants was received after each session to ensure that the administration methods and techniques were client-centered and relatable. Results The quantitative data was analyzed by calculating the average number of points that the group improved by for each question on the outcome measure before and after each session, and then converting that into a percentage for improvement as a group. The mean was taken for each session based on the groups improvements in feelings of ease, stress, physical, emotional, or 6 NATURE-BASED PROGRAMMING psychological pain, and self-awareness. The difference in total group points given on the outcome measure before the session verses after the session were added up and then divided by the number of participants who indicated dis-ease, stress, pain, or lack of self-awareness in the beginning. If a participant did not indicate any level of dis-ease, stress, pain, or lack of selfawareness in the beginning of the session their answer was thrown out. The percent of improvement was calculated by taking the number of points that the group improved by from the beginning of the session to end of the session and dividing it by the number of participants who indicated any sort of dis-ease, stress, pain, or lack of self-awareness in the beginning. Again, if the participant did not indicate any sort of dis-ease, stress, pain, or lack of self-awareness their answer was thrown out. The average number of points improved as a group and percent of improvement as a group following each session is shown in the tables below. Group 1 (FEED Members) Session #1 Group Average (mean) for Percent Improvement as a Improvement Based on a 5pt Group Likert Scale Feeling at Ease 1 point 20% Feeling Stress 0.667 points 13.34% Feeling Physical, n/a (no participant indicated n/a (no participant indicated Emotional, or Psychological any pain in the beginning of any pain in the beginning of Pain the session) the session) Feeling Self-aware 1 point 20% 7 NATURE-BASED PROGRAMMING Session #2 Group Average (mean) Percent Improvement as a Improvement Based on a 5pt Group Likert Scale Feeling at ease 2 points 40% Feeling Stress 1 point 20% Feeling Physical, n/a (no participant indicated n/a (no participant indicated Emotional, or Psychological any pain in the beginning of any pain in the beginning of Pain the session) the session) Feeling Self-awareness 1 point 20% Session #3 Group Average (mean) Percent Improvement Improvement Based on a 5pt as a Group Likert Scale Feeling at ease 0.667 points 13.34% Feeling Stress 1 point 20% Feeling Physical, Emotional, or 1 point 20% Feeling Self-awareness 0 points 0% Session #4 Group Average (mean) Percent Improvement Improvement Based on a 5pt as a Group Psychological Pain Likert Scale Feeling at ease 1.33 points 26.6% 8 NATURE-BASED PROGRAMMING Feeling Stress 0.667 points 13.34% Feeling Physical, Emotional, or 1 point 20% 1 point 20% Psychological Pain Feeling Self-awareness Group 2 (Faculty Members) Session #1 Group Average (mean) Percent Improvement as a Improvement Based on a Group 5pt Likert Scale Feeling at ease 0.334 points 6.68% Feeling Stress 1 point 20% Feeling Physical, Emotional, 1 point 20% 0.667 point 13.34% or Psychological Pain Feeling Self-awareness Session #2 Group Average (mean) Percent Improvement Improvement Based on a 5pt as a Group Likert Scale Feeling at ease 1.5 points 30% Feeling Stress 1 point 20% 9 NATURE-BASED PROGRAMMING Feeling Physical, Emotional, or n/a (no participant indicated any n/a (no participant Psychological Pain pain in the beginning of the indicated any pain in the session) beginning of the session) Feeling Self-awareness 0 point 0% Session #3 Group Average (mean) Percent Improvement Improvement Based on a 5pt as a Group Likert Scale Feeling at ease 2 points 40% Feeling Stress 3 points 60% Feeling Physical, Emotional, or 1 point 20% Feeling Self-awareness 0 points 0% Session #4 Group Average (mean) Percent Improvement as a Improvement Based on a Group Psychological Pain 5pt Likert Scale Feeling at ease 0 points 0% Feeling Stress 0 points 0% Feeling Physical, Emotional, or n/a (no participant indicated n/a (no participant indicated Psychological Pain any pain in the beginning of any pain in the beginning of the session) the session) 10 NATURE-BASED PROGRAMMING Feeling Self-awareness n/a (no participant indicated n/a (no participant indicated any lack of self-awareness in any pain in the beginning of the beginning of the session) the session) One barrier in the quantitative results of this program is that often participants noted very little or no amounts of stress and pain and high amounts of feelings of ease and self-awareness in the beginning of the sessions, leaving very little room for improvement. For example, if a participant indicated a rating of 2 in the beginning of the session, there was only room for one point of improvement, and if they rated a 1 in the beginning of the session there was no room for improvement, which explains why their answer was thrown out of the analysis. The themes found within the qualitative data for group 1 include feeling better and feeling relaxed. The participants indicated that they felt lightweight, calm & peaceful, better prepared to handle stressful situations, able to gather thoughts around their feelings, and on a natural high. Some quotes that were provided by the participants on the outcome measure are as follows: It was cool and relaxing, I felt better after the session. I always feel better after taking time and sitting with myself. I felt good and lightweight after the session. These couple sessions have really helped to relax me and gather my thoughts around my feelings. I feel like I leave better prepared to handle stressful situations. Last session left me feeling as if I was on a natural high; calming and peaceful. After todays meditation I can honestly say that I do feel better than when I started. 11 NATURE-BASED PROGRAMMING The themes found within the qualitative data for group 2 include being able to enjoy the weather/fresh air and the importance of taking time out of the workday for self-care/mental health. The participants indicated that this would be a suitable program to incorporate with the patients at the Flanner Houses upcoming Mental Health Center. Some quotes that were provided by the participants on the outcome measure are as follows: I feel relaxed being able to enjoy the weather and enjoying this fresh air is amazing. Being able to change part of the workday to self-care is so important. I am enjoying being outside even though it is hot out, the breeze of fresh air is nice compared to being cooped inside the office. This would be a great program for the mental health facility due to the grounding and great example of positive outcomes. I feel pretty good overall, and the nice weather helps too! Watching the birds is peaceful. It was good overall, and I would use this program at the Flanner House Mental Health Center. Discussion Based on the results of this program, it is determined that there are positive effects on the individuals who participated. The results indicate group improvements in feelings of dis-ease, stress, pain, and/or lack of self-awareness following the sessions. The qualitative data shows that the program had the greatest effect on reducing levels of stress, which was also indicated in the quantitative data as many individuals reported feeling more relaxed following the sessions. George M. Slavich (2016) writes, life stress is a central construct in many models of human health and disease, he states, stress is involved in the development, maintenance, or exacerbation of several mental and physical health conditions, including asthma, rheumatoid NATURE-BASED PROGRAMMING 12 arthritis, anxiety disorders, depression, cardiovascular disease, chronic pain, human immunodeficiency virus/AIDS, stroke, and certain types of cancer. Stress has also been implicated in accelerated biological aging and premature mortality (p.16). It is known that suffering from stress can be detrimental for the human body and mind in many ways. With this information, we can determine that the reduction in stress levels of the participants of this program likely has an impact on their overall health and well-being and could be even more effective in a long-term program. The qualitative data also highlights the positive effects that the exposure to nature, sun, and fresh air had on participants moods. Because humans are typically inside working for 6-12 hours of the day, we drastically lack vitamin D and the connection to the healing powers of the outdoors in general. Lack of sun exposure superficially is believed to be a large contributor in the prevalence of both mental and physical health problems. Van Der Rhee, Varies, & Coebergh (2016) state that sun exposure provides prevention and treatment of skin diseases like psoriasis and eczema, it photosynthesizes vitamin D which is important for bone and muscle health, and it prevents and treats seasonal affective disorder. The authors write, during the last decades, new favorable associations between sunlight and disease have been discovered: there is growing observational and experimental evidence that regular exposure to sunlight could contribute to the prevention of colorectal-, breast-, prostate cancer, non-Hodgkin Lymphoma (NHL), multiple sclerosis (MS), hypertension and diabetes mellitus (DM) (Van Der Rhee et al, 2016, p.36). Biologically, humans are not designed to be sedentary and indoors for the amount of time that is normalized in our society. This is something that health professionals must consider when evaluating and treating their patients. NATURE-BASED PROGRAMMING 13 Limitations Only immediate effects of this program were analyzed due to the small number of sessions that were able to be completed and the inability to implement the program on a daily or weekly basis. The lack of improvement from one session to the next based on the responses on the outcome measures in the beginning of each session indicated that the program should be done daily or every other day. The inability to perform the sessions in a timely and organized manner was the greatest limitation. The lack of attendance in the participants showing up to work and poor weather conditions were also limitations that hindered the number of sessions that were completed. These are areas of growth for future studies or implementation of this program. Implications The results of this study imply that occupational therapists and other health professionals should strongly consider the amount of outdoor exposure that their clients are receiving as it relates so heavily to not only the treatment of conditions and illnesses but also to the prevention of further health complications. Occupational therapists have an opportunity to expand their knowledge and research on the benefits of incorporating mindfulness practices like grounding, journaling, meditation, breathwork, and exposure to nature overall (each of which are free/low cost) into their interventions and home programs. Afterall, the goal of healthcare should be to provide such great care and education to our clients that there is eventually no need for them to return to therapy or the doctor. If this is not the goal, then we must perform a critical evaluation on our ethics and intentions as therapists and health professionals. 14 NATURE-BASED PROGRAMMING References Britton, W. B., Lepp, N. E., Niles, H. F., Rocha, T., Fisher, N. E., & Gold, J. S. (2014). A randomized controlled pilot trial of classroom-based mindfulness meditation compared to an active control condition in sixth-grade children. Journal of School Psychology, 52(3), 263278. doi: 10.1016/j.jsp.2014.03.002 Brown, A. (2019, October 10). The Benefits of Meditation For Kids. Retrieved from https://thriveglobal.com/stories/the-benefits-of-meditation-for-kids/ Bento, G., & Dias, G. (2017). The importance of outdoor play for young childrens healthy development. Porto Biomedical Journal, 2(5), 157160. doi: 10.1016/j.pbj.2017.03.003 Cheng, F. K. (2016). Is meditation conducive to mental well-being for adolescents? An integrative review for mental health nursing. International Journal of Africa Nursing Sciences, 4, 719. doi: 10.1016/j.ijans.2016.01.001 Cole, M. B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Hamden, Conn: SLACK. Cole, M. B., & Tufano, R. (2020). Applied theories in occupational therapy: a practical approach. SLACK Incorporated. Crescentini, C., Capurso, V., Furlan, S., & Fabbro, F. (2016). Mindfulness-Oriented Meditation for Primary School Children: Effects on Attention and Psychological WellBeing. Frontiers in Psychology, 7. doi: 10.3389/fpsyg.2016.00805 Dadvand, P., Nieuwenhuijsen, M. J., Esnaola, M., Forns, J., Basagaa, X., Alvarez-Pedrerol, M., Sunyer, J. (2015). Green spaces and cognitive development in primary schoolchildren. NATURE-BASED PROGRAMMING 15 Proceedings of the National Academy of Sciences, 112(26), 79377942. doi: 10.1073/pnas.1503402112 Evidence-Based Practice . aota.org. (n.d.). https://www.aota.org/About-OccupationalTherapy/Professionals/EBP.aspx. Ober, A., Chevalier, G., & Zucker, M. (2019, October 23). Grounding the Human Body: The Healing Benefits of Earthing. Retrieved from https://chopra.com/articles/grounding-thehuman-body-the-healing-benefits-of-earthing Oschman, J., Chevalier, G., & Brown, R. (2015). The effects of grounding (earthing) on inflammation, the immune response, wound healing, and prevention and treatment of chronic inflammatory and autoimmune diseases. Journal of Inflammation Research, 83. doi: 10.2147/jir.s69656 Oschman, J. L., Chevalier, G., & Ober, A. C. (2015). Bioelectromagnetic and Subtle Energy Medicine (Second). Boca Raton: CRC Press. Retrieved from https://grounded.com/s/BIOPHYSICS-OF-EARTHING-2015-hpbl.pdf Repke MA, Berry MS, Conway LG, III, Metcalf A, Hensen RM, Phelan C (2018) How does nature exposure make people healthier?: Evidence for the role of impulsivity and expanded space perception. PLoS ONE 13(8): e0202246. https:// doi.org/10.1371/journal.pone.0202246 Slavich, G. M. (2016). Life Stress and Health: A Review of Conceptual Issues and Recent Findings. Teaching of Psychology, 43(4), 346 355. https://doi.org/10.1177/0098628316662768 NATURE-BASED PROGRAMMING Van der Rhee, H. J., de Vries, E., & Coebergh, J. W. (2016). Regular sun exposure benefits health. Medical Hypotheses, 97, 3437. https://doi.org/10.1016/j.mehy.2016.10.011 16  ...

... RUNNING HEAD: OPISI: A DELPHI STUDY 1 Development of the Occupational Performance Inventory of Sexuality and Intimacy: A Delphi Study Morgan Cole, Gracyn Conner, Vaz Dhani, Celia Heckert, Laura McKay 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: Beth Ann Walker, PhD, MS, OTR OPISI: A DELPHI STUDY 2 A Research Project Entitled Development of the Occupational Performance Inventory of Sexuality and Intimacy: 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 Morgan Cole, Gracyn Conner, Vaz Dhani, Celia Heckert, Laura McKay Occupational Therapy Students The validation process Approved by: Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date OPISI: A DELPHI STUDY 3 Abstract The Occupational Performance Inventory of Sexuality and Intimacy (OPISI) was created to aid occupational therapy practitioners in overcoming barriers that prevent them from assessing and addressing sexuality and intimacy with their clients. The purpose of this study was to validate the OPISI to establish the tools legitimacy and instill practitioners with confidence in their ability to accurately assess sexual and intimate occupations. A modified Delphi technique was used to further develop and validate the OPISI which consisted of three iterative rounds with the purpose of gaining consensus between a panel of experts. Each round focused on gathering feedback on items concerning clarity, relevance, importance, and inclusion within the final tool. Through iterative rounds, researchers added, modified, and removed items until all items reached 80% agreement among the expert panel members. The OPISI was created to comprehensively screen, assess, and measure performance related to the complex occupational nature of sexuality and intimacy. With the OPISI validated and published, it is imperative that occupational therapy practitioners assess and address their clients sexuality and intimacy concerns. The OPISI tools are available for download at http://uindy.opisi.edu. OPISI: A DELPHI STUDY 4 Development of the Occupational Performance Inventory of Sexuality and Intimacy: A Delphi Study A core tenet of occupational therapy (OT) is that all individuals have the right to engage in occupations that positively impact their physical, mental, social, political, spiritual, and sexual health and well-being despite personal limitations (American Occupational Therapy Association [AOTA], 2014). Because all individuals have the right to express their sexuality and engage in sexual activities (World Health Organization, 2010), efforts must be made to empower any individual who wishes to participate in their desired sexual and intimate occupations. (AOTA, 2015). Although literature continuously resounds a call to the profession outlining the need, scope, and direction for OT practice in addressing sexuality and intimacy (Couldrick, 1999; Hattjar, Parker, & Lappa, 2008; Neidstadt, 1986; Neidstadt & Baker, 1978; Sellwood, Raghavendra, & Jewell, 2017) occupational therapists often fail to assess (Lichtenberg, 2014) or attend to the sexual and intimate needs of their clients (Hattjar et al., 2008; Lohman, Kobrin, & Chang., 2017). From the perspective of the practitioner, limitations to addressing the sexual and intimate occupational needs of clients include lack of comfort (McGrath & Lynch, 2014; Richards, Dean, Burgess, & Caird, 2016), confidence (Jones, Weerakoon, & Pynor, 2015; McGrath & Lynch, 2014), and competence (Eglseder & Webb, 2018; Areskoug-Josefsson, Larsson, Gard, Rolander, & Juuso, 2016). Many of these barriers could be resolved through a better understanding of the occupational nature of sexuality and intimacy and the development of theoretical and occupation-focused assessment tools (Walker, Otte, LeMond, Hess, Kaizer, Faulkner, & Christy, 2020). The role of evaluation in occupational therapy is to assess an individuals client factors, performance patterns, performance skills, environment, and activity demands in order to OPISI: A DELPHI STUDY 5 determine barriers, supports, and priorities for therapy (AOTA, 2014). Gill, Sander, Robins, Mazzei, & Struchen (2011) suggest a comprehensive analysis of factors including gender identity, sexual orientation, relationship status, age, physical health, and strengths and barriers to relationships would enhance the evaluation and intervention process relating to sexuality and intimacy. However, the lack of assessment regarding sexuality and intimacy is a concern within medical care and rehabilitation (Lichtenberg, 2014). Given the lack of an occupation-focused assessment, the Occupational Performance Inventory of Sexuality and Intimacy (OPISI) was created to guide practitioners in comprehensively screening, assessing, and measuring performance related to the complex occupational nature of sexuality and intimacy (Walker et al., 2020). The OPISI was based on the Occupational Therapy Sexual Assessment Framework (OTSAF) which consists of the following constructs: sexual knowledge, sexual activity, sexual interest, sexual response, sexual expression, sexual self-view, intimacy, sexual health, and family planning. According to the framework, a persons client factors (sexual knowledge, sexual self-view), body structures, and body functions (sexual interest, sexual response) influence performance of relevant occupations (sexual activity, sexual expression, intimacy, sexual health, and family planning) that occur within an individuals context (definitions for each construct provided in Table 1). Phase one in the development of the OPISI was informed by Devellis (2017) guidelines for scale development and included the following steps: mapping the construct, reviewing 35 existing tools associated with sexuality and intimacy and categorizing existing items into constructs of the OTSAF, modifying items to reflect terminology consistent with the OTPF, creating new items until theoretical saturation was achieved, determining indicators and scale of measurement, and conducting a pilot study to review the initial item pool (Walker et al., 2020). The OPISI includes a self-screen, in-depth self- OPISI: A DELPHI STUDY 6 inventory, and performance measure to establish a baseline and detect self-perceived changes in occupational performance associated with sexuality and intimacy over time. There is a need to establish the validity of the OPISI because according to Bass (2014), occupational therapy assessment tools should be validated in order to establish the tools legitimacy and instill practitioners with confidence in the tools ability to accurately address sexual and intimate occupations. Content validity is established by receiving feedback about how well the items of a measure reflect the construct from a panel of experts and ensures that items accurately represent the content of the indicated subject matter and the construct measured (Kielhofner & Coster, 2017). Gaining access to experts and their feedback is best optimized through the use of the Delphi technique (Terwee et al., 2018). Thus, the purpose of this study is to use a modified Delphi technique to further develop and validate the OPISI. Methods A web-based modified Delphi design was selected for its utility in developing and obtaining content validity (Falzarano & Zipp, 2013). A Delphi method is an iterative process that aims to gain consensus through a panel of experts (Custer, Scarcella, & Stewart, 1999; Rowe & Wright, 1999). Although the Delphi technique may be considered a mixed-method approach, social constructivism serves as the theoretical paradigm as the three-phase approach involves the collection of multiple perspectives which collectively progresses with each round (Amos & Pearse, 2008; Jnger Payne, Brine, Radburuch, & Brearly, 2017). A modified Delphi technique was employed because the items were originally developed based on a thorough review of related literature, relevant scales, interviews with clients, and feedback from various health care professionals (Walker et al., 2020), rather than from open-ended findings from the panel of experts. For this study, researchers employed a modified Delphi technique using a web-based OPISI: A DELPHI STUDY 7 design. Web-based Delphi designs typically allow for increased anonymity, reduced geographical barriers, simpler data processing, and more time for experts to reflect on their answers (Holloway, 2012). The researchers Institutional Review Board reviewed the research proposal and given the purpose of the study, which did not handle personal sensitive data, determined this research did not meet the federal definition for human subjects research. Item Pool Development A deductive approach was used to generate a pool of existing relevant items found in a review of 35 existing scales (Walker et al., 2020). Items were then categorized into relevant constructs of the OTSAF and modified to align with the OTPF. The next step was to brainstorm possible occupation-based elements that were necessary to include within an assessment tool (Walker et al., 2020). The initial item pool was reviewed by 13 occupational therapists, a physical therapist, and George Szasz, renowned physician and pioneer in sexual medicine who developed the Sexual Assessment Framework in the 1970s. The first draft of the OPISI included a screening tool (13 items), in-depth self-assessment for Sexual Activity (26 items), Sexual Interest (23 items), Sexual Response (18 items), Sexual Expression (7 items), Sexual Self-View (14 items), Intimacy (23 items), Sexual Health and Family Planning (11 items), and a performance measure (28 items). Selection of Experts Purposive sampling followed by snowball sampling was used to ensure a valid panel and promote outcome trustworthiness (Holloway, 2012). According to Jnger, Payne, Brine, Radburuch, & Brearly (2017), the most referenced criteria for selecting expert panelists includes: heterogeneous grouping, similar interest, recognizes the experts as an authority, and geographical origin. The panelists were deemed experts if they met the following criteria: (1) be an OPISI: A DELPHI STUDY 8 occupational therapist; (2) have experience addressing sexuality and intimacy concerns with clients of occupational therapy; (3) hold the belief that providing clients with information to increase their understanding of how their illness, injury, disability, or life stage may influence their expression of sexuality, interaction with their partner(s), and participation in sexual activities was within the scope of occupational therapy practice; and (4) hold the belief that providing clients with specific suggestions on how to modify or improve performance associated with expression of sexuality, interaction with their partner(s), and participation in sexual activities is within the scope of occupational therapy practice. Initial recruitment began at the 2019 AOTA conference in New Orleans, Louisiana by connecting with individuals who presented on related topics or attended the primary authors poster presentation about phase one in the development of the OPISI. Additional efforts included emailing authors of notable related literature and posting a recruitment announcement on the AOTA CommunOT general forum board. Those who met the inclusion criteria were also asked to suggest other potential experts. Needham and de Loe (1990) recommend a minimum sample size of 10 and a maximum of 50. However, a sample size of 15-30 experts is recommended when the experts are from the same discipline (de Villiers, de Villiers, & Kent, 2005). Procedure Qualtrics Online Survey Software was used to develop, send, and record all data and demographics from the respondents. All rounds of data were collected between May 2019 and December 2019. The Delphi format generally involves two to four iterative rounds (Sharkey & Sharples, 2001; Shariff, 2015). Researchers decided to follow Jones, Sung, and Moyles (2018) suggestion of initially planning three rounds, however a final decision about the need for an additional round would be made pending the results of Round 3 (Biondo, Nekolaichuk, Stiles, OPISI: A DELPHI STUDY 9 Fainstinger, & Hagen, 2008). A threshold criterion for (non) consensus was set conservatively at 80% (Biondo, Nekolaichuk, Stiles, Fainstinger, & Hagen, 2008; Falzarano & Zipp, 2013; Keeney, Hasson, & McKenna, 2005). However, items with an agreeance level between 70-80% in the initial round would be thoroughly reviewed and potentially reworded for clarity prior to making final determinations on the item for inclusion in the second round. Round 1 The Round 1 survey included demographic items to determine respondents expertise and the relevance of items for inclusion in Round 2. The demographic section asked for: years of experience, geographic location, primary practice setting, frequency, and experience of addressing sexuality and intimacy, and if the respondents believed sexuality and intimacy was pertinent to the occupational therapy scope of practice. Operational definitions of the OTSAF were provided to give clarity and to assure appropriate understanding of each construct measured. For each item, respondents were able to choose yes if they believed the item was relevant to the construct being measured or no if they believed the item was not relevant. Space was provided to allow experts the opportunity to provide item level feedback for clarity. At the end of each section, space was also provided for experts to suggest additional items for consideration and inclusion in the next round. Once the survey was completed, experts were asked to organize the OTSAF constructs in the order they believed the constructs should be presented in the final in-depth portion of the OPISI. Experts were given two to four weeks to complete the Round 1 survey and email reminders were sent periodically throughout those two weeks. Only the items which met the established percentage agreement, edited items, and newly suggested items would be included in Round 2. Items that reached 80% agreement from Round 1 are included in Round 2. The items that received at least a 70% agreement by the experts in OPISI: A DELPHI STUDY 10 Round 1, but did not receive at least an 80% agreement, were either removed or reworded for clarity. Experts received a summary report for Round 1 which included a review of expert nonidentifiable demographics, percentage agreement, item removal, item modification requests, qualitative findings from expert discourse, and information to address knowledge gaps prior to receiving the Round 2 questionnaire. Round 2 The Round 2 survey asked experts to rate the level of importance of each item using a 7-point Likert scale (1=not important; 7=most important). For items that did not meet a 5 or higher, experts were asked to provide a rationale for the score. Experts were asked to select one of three choices for the order in which constructs would be presented on the screening form and subsequent sections of the OPISI. Experts were given two weeks to complete the Round 2 survey and sent email reminders periodically. Any item that at least 80% of experts scored a 5 or higher on the Likert scale was included in Round 3. Items that 80% of experts scored a 5 or lower were not included in round 3. Similar to Round 1, experts would receive a Round 2 summary prior to receiving the Round 3 questionnaire. Round 3 The Round 3 survey asked experts to indicate which items either must be included or removed from the final version of the OPISI. Only those items in which 80% of experts determined must be included in the scale would be included in the final version of the OPISI. Depending on the results of Round 3, a determination would be made on the need for additional rounds. OPISI: A DELPHI STUDY 11 Rigour The following techniques were employed to evaluate methodological rigour: credibility, transferability, dependability, and confirmability (Letts, Wilkins, Law, Stewart, Bosch, & Westmorland, 2007). Credibility techniques included reflexivity and member checking. The researchers continuously engaged in reflexivity by critically self-reflecting about potential biases and predispositions (Lysack, Luborsky, & Dillaway, 2017). Member checking was utilized to check the accuracy of assumptions and interpretations of expert feedback (Lysack, Luborsky, & Dillaway, 2017). Transferability was addressed through having a nominated sample and providing a dense description of the experts (Letts et al., 2007). Techniques to improve dependability included peer review and investigator triangulation. The researchers participated in peer review by discussing the results of each round with other content and research experts (Workman, Kielhofner, & Taylor, 2017). The researchers completed investigator triangulation by cross checking conclusions and adaptations of each round as well as different rounds to achieve corroboration and enhance the accuracy of the data gathered (Lysack et al., 2017). Confirmability was addressed through employing techniques to reduce bias in the data through self-examination by the researchers, peer review, working as a research team, and checking in with the experts on their own interpretations of the data obtained (Letts et al., 2007). Results Expert Panel The demographic characteristics of the expert panel are shown in Table 2. All experts were certified occupational therapists with experience ranging from 1-38 years (x = 17). Experts were predominantly from the United States: Northeast (n=9), South (n=9), Midwest (n=11), and West (n=4). One expert was from the United Kingdom. The expert panelists mainly worked in OPISI: A DELPHI STUDY 12 academia (n=14), while other experts worked in schools (n=2), freestanding outpatient (n=6), home health (n=1), hospital non-mental health (n=5), long term care (skilled nursing facility) (n=1), mental health (n=4), and neuro (n=1).. The majority of experts felt providing clients with information to increase their understanding of how their illness, injury, disability, or life stage may influence their expression of sexuality, interaction with their partner(s), and participation in sexual activities was Definitely within the scope of occupational therapy practice (94.12%, n = 34). Thirty-one experts felt providing clients with specific suggestions on how to modify or improve performance associated with expression of sexuality, interaction with partner(s), and participation in sexual activities was Definitely within the scope of occupational therapy practice. All demographic results are displayed in Table 2 Round One Thirty-three experts completed Round 1. Four of the thirteen items in the screening tool did not meet the 80% threshold for acceptance (75.86%, 72.41%, 79.31%, 79.31%). Based on expert feedback, these items were reworded for clarity rather than discarded. For example, the item According to my values and beliefs regarding sexuality and intimacy: I prefer to only receive handouts or brochures from the occupational therapist about this topic was changed to: Based on my identified concerns: I am interested in receiving handouts, brochures, or online resources from an occupational therapy practitioner about this topic. Two items that met the 80% threshold for acceptance were also reworded for clarity. Sexual Activity. Two items did not meet the 80% threshold (76.67% & 77.42%) in Sexual Activity and based on respondent feedback, they were reworded for clarity and included in the next round. OPISI: A DELPHI STUDY 13 Eight other items were reworded based on expert feedback. An example of an item that was changed was: I am disappointed with the quality of my sex life to I am not satisfied with the quality of my sex life. One item that was added was I worry that my medications will affect my performance during sexual activity. Two items were condensed into one and four new items were added. Sexual Interest. All items in Sexual Interest met the 80% requirement but four items were reworded for clarity and five new items were added. For example, the item Pain, or anticipation of pain, interferes with my drive was changed to Pain, or anticipation of pain, interferes with my desire to participate in sexual activities due to ongoing discussion with panel members about the appropriateness of the term drive. One new item was I worry that my interest in sex is inadequate. Sexual Response. All items in Sexual Response met the 80% requirement but 4 items were reworded, 2 items were condensed into one, and one new item was added. For example, the item My body does not respond appropriately during foreplay or when erogenous zones are caressed or manipulated was changed to I experience difficulty becoming aroused during foreplay or when erogenous zones are caressed or manipulated. The item that was added was My indwelling catheter will hurt my partner(s) during penetration and this interferes with my ability to experience sexual satisfaction or orgasm. Sexual Expression. Four items were added to the Sexual Expression portion of the Outcome Measure. Sexual Self-View. Two items did not meet 80% agreement (78.12%, 75.00%) in Sexual Self-View. One of these items was eliminated while the other was reworded for clarity. For OPISI: A DELPHI STUDY 14 example, the item I am worried about how the sexual aspects of my life appear to others was reworded to I am worried about how my sexuality or sexual identity appear to others. Eight items were reworded for clarity and two new items were added. For example, the item I am not sure I understand my sexual feelings was changed to I am not sure I understand my sexual feelings, sexuality, gender identity, and/or sexual orientation. An example of an item that was added includes I worry that my insecurities with my sexuality interfere with my ability to have a satisfying intimate/sexual relationship. Intimacy. Two items in Intimacy did not meet 80% agreement (75.00%, 75.00%) and were reworded for clarity along with 10 others. Two items were condensed into one and five new items were added. For example, the items My condition limits my ability to fulfill my partners(s) needs and My partners(s) find it difficult to meet my intimate or sexual needs within our relationship were condensed into My symptoms/condition makes it challenging to fulfill my partners(s) sexual needs/desires or for my partner(s) to meet my sexual needs/desires. One item that was added based on expert feedback was I would like to explore alternative ways to be intimate with my partner that does not include intercourse. Sexual Health and Family Planning. All items in Sexual Health & Family Planning reached 80% agreement but 3 were reworded for clarity and 1 new item was added. For example, I have a concern for how my current condition and limitations may interfere with practicing safe sex was reworded to Due to my condition, I am concerned about my ability to practice safe sex. The item that was added was I do not know how to choose the right method of contraception to prevent pregnancy to address concerns about the lack of items pertaining to contraceptives. OPISI: A DELPHI STUDY 15 Outcome Measure. The instructions for the Outcome measure were reworded for clarity as well as a majority of the items based on expert feedback. Experts received a summary report that included the results of the first round (demographic data, item approval rates), made clarifications to support the iterative process, and a review of the various comments provided by all experts in Round 1. The report addressed the layout of the OPISI due to several comments that insinuated a misunderstanding of the Screening Tool and Outcome Measure. Some experts suggested combining Sexual Self-View and Sexual Expression into one domain. Given that Sexual Expression is an occupation and Sexual SelfView is a client factor, a decision was made to not combine the categories. The summary addressed comments about the removal of masculine and feminine in favor of gender-neutral terms. Through further investigation, researchers found that gender expression is seen as a continuum with masculine and feminine as opposite ends of that continuum. Unfortunately, there is a lack of gender neutral words that are identified and/or widely understood as synonymous for masculine and feminine. For example, when laypersons were presented with the item My condition leaves me feeling less masculine/feminine/other versus My condition leaves me feeling disconnected from my gender identity and that is a problem, several discussed a concern about how the gender neutral modification changed the meaning or understanding of the item to them. With this information, researchers made the decision to keep the words masculine and feminine in the assessment tool. This summary was intended to provide the experts with the information needed before completing Round 2. Round Two Thirty-two experts completed Round 2. All items in the screening tool met the 80% agreement threshold. OPISI: A DELPHI STUDY 16 Sexual Activity. The definition of Sexual Activity was modified in order to expand on the possibility for intercourse and the use of sexual toys or devices. All items in Sexual Activity met the 80% agreement threshold. Five items were reworded for clarification and two items were added to the Sexual Activity construct. For example, the item I would like to explore alternative options to increase the variety of ways I participate in sexual activities was reworded to I am not satisfied with the variety of sexual activities I have to participate in. One of the added items was moved from Intimacy to Sexual Activity, while the other new item was added based on feedback. The item moved to Sexual Activity from Intimacy was My limited ability to attend to my appearance and hygiene in preparation for sexual activities is a problem. The new item that was added was I experience difficulty opening and putting on a condom, and/or application of lubrication during sexual activities. Sexual Interest. All items in Sexual Interest met the 80% agreement threshold. Based on feedback, three items were condensed into one item and one item was removed from Sexual Interest. The three items I worry that my interest in sex is inadequate, I am dissatisfied with my desire to engage in sexual activities with my partner(s), and Limited motivation interferes with my sex drive were condensed into one item I am dissatisfied with my desire to engage in sexual activities. The item that was removed was I am not interested in sexual activity because I am too anxious or afraid due to feedback related to ethical practice. Sexual Response. The definition of Sexual Response was modified to include prostate release as a sexual response. One item in Sexual Response did not achieve 80% agreement (77.78%) and was removed. The item that did not meet the agreement threshold was I worry that my indwelling catheter will hurt my partner(s) during penetration and this interferes with my ability to experience sexual satisfaction or orgasm. Additionally, another item was removed OPISI: A DELPHI STUDY 17 from this construct, but content in that item was used to modify two other items. Content from the deleted item I experience a delay in orgasm or ejaculation was used to modify the items I experience delay or difficulty achieving orgasm with masturbation and I experience delay or difficulty achieving orgasm during sexual activity with a partner. Sexual Expression. All of the items in Sexual Expression met the 80% agreement but one item was reworded for clarity. The item My ability to express the pride I feel about myself as a sexual being has changed was reworded to My ability to express pride in who I am as a sexual being has changed. One new item was added to Sexual Expression due to feedback from participants. The item added was My ability to participate in community-based activities where I openly express my sexuality has changed. Sexual Self-View. One item did not meet 80% agreement (77.78%) in Sexual Self-View and was removed. The item that did not meet agreement by the experts was I am embarrassed by my sexual thoughts and fantasies. Due to clarification, three items were modified in this construct. An example of an item that was changed was: The extent of care and assistance I need impacts my sexual self-esteem and leaves me feeling powerless to The extent of care and assistance I need leaves me feeling powerless which impacts my sexual self-esteem. Another item was removed from Sexual Self-View due to feedback from participants that the item seemed repetitive. Intimacy. All of the items in Intimacy met the 80% agreement but four items were modified to focus more on intimacy rather than sex. For example, the item I would like to explore alternative ways to be intimate with my partner that does not include intercourse was reworded to I would like to explore non-sexual ways to be intimate with my partner(s). As stated above, one item from Intimacy was moved to Sexual Activity. One new item was added OPISI: A DELPHI STUDY 18 based on recommendations made by the experts. The new item added to this construct was I am not comfortable asking my partner(s) for help during intimate activities such as dressing, undressing, positioning, condom application, applying lubrication, etc. Sexual Health and Family Planning. All items in Sexual Health and Family Planning met the 80% agreement threshold, however, one item was reworded for clarity. The item My partner is hesitant to create a family with me because they will take on most of the physical responsibility was modified to My partner is hesitant to create a family with me because they will take on most of the responsibility. Experts received a summary report that included the results of the second round, made clarifications to support the iterative process, and a review of the various comments provided by all experts in round 2. There was some participant confusion about the timing of the outcome measure and its purpose. Researchers clarified that the outcome measure is to be used following an in-depth review of the clients responses, and the purpose of the outcome measure is to act as a pre-test and post-test to assess therapeutic interventions. Also, in Sexual Interest, there was concern noted for the use of the term sex drive in multiple items throughout this checklist as sexual desire is the preferred clinical terminology. Upon further investigation and deliberation, researchers felt it was important to consider the consumers health literacy and universal understanding of the term sex drive versus sexual desire. Thus researchers decided to keep the term sex drive in hopes to increase the consumers comprehension of the items that address this topic. Based on feedback from the participants, colleagues, and George Szasz (who developed the original Sexual Assessment Framework), the order of the constructs was modified and will now be as follows: Sexual Activity, Sexual Interest, Sexual Response, Sexual Expression, Sexual Self-View, Intimacy, and Sexual Health and Family Planning. OPISI: A DELPHI STUDY 19 Round Three Thirty-one experts completed Round 3. All items in the screening tool met 80% agreement between participants. Experts received a summary report that included the results of the third round and a review of the various comments provided by all experts in round 3.The introductory paragraph in the screening tool was reworded to increase inclusivity of occupational therapy assistants in the administration of the OPISI. All previous occupational therapists were changed to occupational therapy practitioners. One item in Sexual Activity and Intimacy did not not achieve the 80% agreement and each item was removed from the item pool. All items in Sexual Interest, Sexual Response, Sexual Expression, Sexual Self-View, Sexual Health and Family Planning, and the performance measure achieved the 80% agreement threshold. An overview of the rounds is displayed in Figure 1. Discussion The purpose of this study was to validate the OPISI so that occupational therapy practitioners are able to use it as an effective measure of clients sexuality and intimacy concerns. The validation process was grounded in the OTSAF theory and relied on an expert panel which consisted of 34 occupational therapists. All experts agreed that providing clients with suggestions or interventions to improve their sexuality and intimacy experiences falls under the OT scope of practice. After three rounds of expert panel feedback, 49 items were reworded, 15 items were added, and 6 items were removed. Items were modified based on feedback concerning item clarity, gender neutrality, inclusivity, and reading level (Walker, 2020). All items reached consensus (>80% agreement) at the conclusion of the three rounds. The OPISI tools are LGBTQIA+ affirmative and designed for use with English speaking adults (18+). According to the Flesch readability level, the OPISI tools should be easily OPISI: A DELPHI STUDY 20 understood by 13 15 year old students (7th-9th grade). Although several items of the OPISI were informed by the sexuality and intimacy needs of adults with intellectual disabilities along with common concerns of adolescent populations, it is not recommended that the OPISI tools be administered to these populations in the same format. Individuals with intellectual disabilities or adolescents may not have an appropriate understanding of the content to fully benefit from the OPISI. Adolescents are still developing and their sexuality and intimacy concerns are different than those of adults and may not relate to the current version of the OPISI. Occupational therapy practitioners may use the OPISI tools as a resource to guide dialogue, determine possible needs, understand the scope of possible client concerns, plan interventions, and measure performance. Future efforts will include interpreting the OPISI tools into other languages and designing OPISI tools specifically addressing the unique needs of adolescents and adults with intellectual and developmental disabilities. Implications for Practice Before the development of the OPISI, practitioners faced barriers to address sexuality and intimacy with their clients. With the OPISI validated and published, practitioners may use it worldwide in a variety of settings and populations. The OPISI tools may be used in any setting where occupational therapy services are provided if used with adults who are able to contemplate the material and provide an informed response. In order to break the silence in addressing sexuality and intimacy it is imperative that discussions between practitioners and clients take place across the continuum of care. The OPISI screen provides a starting point for discussion and aims to aid practitioners to overcome barriers of competence, confidence, and comfort. The in-depth inventory provides the client the opportunity to specifically identify and discuss their sexual and intimate concerns which serves OPISI: A DELPHI STUDY 21 to inform intervention planning. Lastly, the outcome measure allows the practitioner and client to track overall progress and satisfaction overtime. Free open access to the OPISI tools is available following registration at http://uindy.opisi.edu Limitations One limitation of the study was lack of expert panelists across every OT setting with experts primarily from academia. Experts from academia may tend to keep up with current trends, but are most likely not in direct contact with clients. The extent of feedback and recommendations for modifications Those experts with greater knowledge and experience related to addressing sexuality and intimacy tended to provide more feedback than others which may present an unequal influence of those experts on final outcomes. The surveys associated with each round were long and time consuming which led to a concern about fatigue which may contribute to less reliable feedback throughout the survey (Crist, 2014). The OTSAF was a newly developed theory which had not been published during the conduct of the study. Because experts were working with unfamiliar constructs, this led to a possible learning curve which may have contributed to a shift in feedback with each consecutive round. The use of Qualtrics Online Survey Software made it difficult to envision the end product which may have led to initial confusion in the first round. Future Research This study validated the first edition of the OPISI. Once occupational therapy practitioners begin using this tool in practice, future research is needed to assess the reliability and validity of the OPISI specifically within various client populations. Additionally, efforts should be made to further research and create related assessments for specific populations that have known, but unique, sexuality and intimacy concerns such as persons with intellectual OPISI: A DELPHI STUDY 22 disabilities, or pediatric clients (Krantz, Tolan, Pontarelli, & Cahill, 2016; Swango-Wilson, 2011). Conclusion The foundation of occupational therapy is to allow people to pursue all needs and interests, including sexuality and intimacy. Despite the fact that sexuality and intimacy fall within the scope of OT practice, practitioners consistently show decreased comfort, competency, and confidence. Practitioners may benefit from an all-inclusive understanding of various factors that influence sexuality and intimacy. For this reason, the OPISI is a set of theory-based and occupational-focused tools which are accessible to OT practitioners to appropriately address their clients sexuality and intimacy concerns. By validating the OPISI, practitioners can be more confident and consistent by using evidence-based and credible tools. Use of the OPISI in practice serves to ignite the current paradigm shift within this realm of occupational therapy practice. Previous to the development and validation of the OPISI, much of the literature surrounding sexuality and intimacy focused on the lack of occupational therapists addressing their clients concerns. Through development and validation, the developers of the OPISI intentionally aimed to provide a solution to this persistent barrier facing occupational therapists and their clients. With free and worldwide open access to the OPISI and related tools, it is imperative and expected that occupational therapists begin addressing their clients sexuality and intimacy concerns. OPISI: A DELPHI STUDY 23 References Akins, R. B., Tolson, H., & Cole, B. R. (2005). Stability of response characteristics of a Delphi panel: Application of bootstrap data expansion. BMC Medical Research Methodology, 5(37), 1-12. https://doi.org/10.1186/1471-2288-5-37 American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68 (Suppl. 1), S1-S48. https://doi.org/10.5014/ajot.2014.682006 American Occupational Therapy Association. (2015). Occupational therapy code of ethics. American Journal of Occupational Therapy, 69(3), 1-8. http://dx.doi.org/10.5014/ajot.2015.696S03 Amos, T., & Pearse, N. (2008). Pragmatic research design: An illustration of the use of the delphi technique. Electronic Journal of Business Research Methods, 6(2), 95102. Areskoug-Josefsson, K., Larsson, A., Gard, G., Rolander, B., & Juuso, P. (2016) Health care students attitudes towards working with sexual health in their professional roles: Survey of students at nursing, physiotherapy and occupational therapy programmes. Sexuality and Disability, 34(3), 289-302. https://doi.org/10.1007/s11195-016-9442-z Bass, J. D. (2014). Assessment identification and selection. In J. Hinojosa & P. Kramer (Eds.), Evaluation in occupational therapy: Obtaining and interpreting data (pp. 35-45). Bethesda, MD: AOTA Press. Biondo, P. D., Nekolaichuk, C.L., Stiles, C., Fainstinger, R., & Hagen, N. (2008). Applying the Delphi process to palliative care tool development: lessons learned. Support Care Cancer, 16, 935-942. OPISI: A DELPHI STUDY 24 Couldrick, L. (1999). Sexual issues within occupational therapy, part 2: Implications for education and practice. British Journal of Occupational Therapy, 62, 2630. https://doi.org/10.1177/030802269906200107 Custer, R.L., Scarcella, J.A. and Stewart, B.R. (1999). The modified delphi technique: A rotational modification. Journal of Career and Technical Education, 15(2), 50-58. DeVellis, R. F. (2017). Scale development: Theory and applications (4th ed.). Chapel Hill, NC: SAGE Publications, Inc. de Villiers, M. R., de Villiers, P. J. Y., & Kent, A. P. (2005). The Delphi technique in health sciences education research. Medical Teacher, 27(7), 639-643. https://doi.org/10.1080/13611260500069947 Eglseder, K., & Webb, S. (2018). Sexual functioning in occupational therapy education: A survey of programs. The Open Journal of Occupational Therapy, (6)3, 1-16. https://doi.org/10.15453/2168-6408.1446 Falzarano, M. & Zipp, G. P. (2013). Seeking consensus through the use of the Delphi technique in health sciences research. Journal of Allied Health, 42(2), 99-105. Gill, C., Sander, A., Robins, N., Mazzei, D., & Struchen, M. (2011). Exploring experiences of intimacy from the viewpoint of individuals with traumatic brain injury and their partners. The Journal of Head Trauma Rehabilitation, 26, 5668. https://doi.org/10.1097/HTR.0b013e3182048ee9 Hattjar, B., Parker, J. A., & Lappa, C. L. (2008). Addressing sexuality with adult clients with chronic disabilities: Occupational therapys role. OT Practice, 13(11), CE-2p. OPISI: A DELPHI STUDY 25 Hinojosa, J., Kramer, P. (2014). Evaluations in occupational; therapy. In Christ, P, Reliability and validity: The psychometrics of standardized assessments (143-160). American Occupational Therapy Association Inc. Holloway, K. (2012). Doing the E-Delphi: Using online survey tools. CIN: Computers, Informatics, Nursing, 30(7), 347-350.https://doi.org/10.1097/NXN.0b013e31825e8923 Jones, M. K., Weerakoon, P., & Pynor, R. R. (2005). Survey of occupational therapy students attitudes towards sexual issues in clinical practice. Occupational Therapy International, 12(2), 95-106. https://doi.org/10.1002/oti.18 Jones, C., Sung, B. & Moyle, W. (2018). Engagement of a person with dementia scale: Establishing content validity and psychometric properties. Journal of Advanced Nursing, 74, 2227-2240. https://doi.org/10.1111/jan.13717 Jnger, S., Payne, S. A., Brine, J., Radburuch, L., & Brearly, S. G. (2017). Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliative Medicine, 31(8), 684-706. https://doi.org/10.1177/0269216317690685 Kielhofner, G. & Coster, W. (2017). Developing and evaluating quantitative data collection instruments. In Taylor, R. (Eds), Kielhofner's research in occupational therapy methods of inquiry for enhancing practice (pp. 285). F.A. Davis Company. Krantz, G., Tolan, V., Pontarelli, K., & Cahill, S. M. (2016). What do adolescents with developmental disabilities learn about sexuality and dating? A potential role for occupational therapy. The Open Journal of Occupational Therapy, 4(2). https://doi.org/10.15453/2168-6408.1208 OPISI: A DELPHI STUDY 26 Letts, L., Wilkins, S.. Law, M., Stewart, D., Bosch, J., & Westmorland, M. (2007). Critical review formQualitative studies (Version 2.0). https://srsmcmaster.ca/Portals/20/pdf/ebp/qualreview_version2.0.pdf Lichtenberg, P. A. (2014). Sexuality and physical intimacy in long term care. Occupational Therapy in Health Care, 28(1), 42-50. https://doi.org/10.3109/07380577.2013.865858 Lohman, H. L., Kobrin, A., & Chang, W. (2017). Exploring the activity of daily living of sexual activity: A survey in occupational therapy education. The Open Journal of Occupational Therapy, 5(2). https://doi.org/10.15453/2168-6408.1289 Lysack, C., Luborsky, M. R., & Dillaway, H. (2017). Chapter 17 Collecting Qualitative Data. In Kielhofner's Research in Occupational Therapy Methods of Inquiry for Enhancing Practice (2nd ed., pp. 196213). Philadelphia, PA: F.A. Davis Company. McGrath, M. & Lynch, E. (2014) Occupational therapists perspectives on addressing sexual concerns of older adults in the context of rehabilitation, Disability and Rehabilitation, 36(8), 651-657. https://doi.org/10.3109/09638288.2013.805823 Neistadt, M. & Baker, M. F. (1978). A program for sex counseling the physically disabled. American Journal of Occupational Therapy, 32, 646-647. Neistadt, M. (1986). Sexuality Counseling for adults with disabilities: A module for an occupational therapy curriculum. American Journal of Occupational Therapy, 40, 542545. https://doi.org/10.5014/ajot.40.8.542 Richards, A., Dean, R., Burgess, G. H., & Caird, H. (2016). Sexuality after stroke: An exploration of current professional approaches, barriers to providing support and future royal directions, Disability and Rehabilitation, 38(15), 1471-1482. https://doi.org/10.3109/09638288.2015.1106595 OPISI: A DELPHI STUDY 27 Rowe, G. & Wright, G. (1999). The Delphi technique as a forecasting tool: Issues and analysis. International Journal of Forecasting, 15(4), 353 - 375. https://doi.org/10.1016/S01692070(99)00018-7 Rubio, D.M., Berg-Weger, M., Tebb, S.S., Lee, E.S., & Rauch, S. (2003). Objectifying content validity: Conducting a content validity study in social work research. Social Work Research, 27(2), 94104. Sellwood, D., Raghavendra, P., & Jewell, P. (2017). Sexuality and intimacy for people with congenital physical and communication disabilities: Barriers and facilitators: A systematic review. Sexuality and Disability, 35(2), 227-244. https://doi.org/10.1007/s11195-017-9474-z Sharkey S.B., Sharples A.Y. (2001). An approach to consensus building using the Delphi technique: Developing a learning resource in mental health. Nurse Education Today 21: 398-408. Swango-Wilson, A.. (2011). Meaningful sex education programs for individuals with intellectual/developmental disabilities, Sexuality and Disability, 29(2), 113-118. doi: 10:1007/s11195-010-9168-2 Terwee, C. B., Prinsen, C., Chiarotto, A., Westerman, M. J., Patrick, D. L., Alonso, J., Bouter, L. M., de Vet, H., & Mokkink, L. B. (2018). COSMIN guideline for evaluating the content validity of patient-reported outcome measures: A Delphi study. Quality of Life Research, 27(5), 11591170. https://doi.org/10.1007/s11136-018-1798-3 Workman, D. E., Kielhofner, G., & Taylor, R. R. (2017). Chapter 14 Ensuring Ethical Research. In Kielhofner's Research in Occupational Therapy Methods of Inquiry for Enhancing Practice (2nd ed., pp. 144161). Philadelphia, PA: F.A. Davis Company OPISI: A DELPHI STUDY World Health Organization. (2010). Developing sexual health programs: A framework for action. http://www.who.int/reproductivehealth/publications/sexual_health/rhr_hrp_10_22/en/ 28 OPISI: A DELPHI STUDY 29 Table 1. Occupational Therapy Sexual Assessment Framework Constructs and Definitions Construct Definition Sexual knowledge What a person knows, understands, believes, and values in regard to sexuality and intimacy. Sexual activity A persons ability to safely engage in sexual and/or intimate activities (alone or with another person). Sexual activities may include hugging, kissing, foreplay, masturbation, oral sex, anal sex, vaginal sex, and use of sexual toys or devices. Sexual interest A persons psychological and physiological drive, motivation, desire, or libido related to participation in sexual activities alone or with another person. Sexual response The bodys physical sexual response associated with sexual activity including physiological arousal, response to erogenous zones, nipple erection, clitoral excitation, erection, vaginal lubrication, prostate release, ejaculation, and/or orgasm. Sexual expression A persons ability to express themselves as a sexual being. A person may express their sexuality and/or gender identity through behaviors, mannerisms, preferences, appearance, pronouns, political engagement, acquired tendencies, daily routines, symbolic actions, or preferred roles. Sexual self-view How a person views themselves as a sexual being and includes aspects of sexual identity, gender identity (examples among many: man, woman, nonbinary, transman, ciswoman, genderqueer, gender nonconforming), sexual self-esteem (a persons comfort and confidence with how they view themselves as a sexual being), and body image (mental representation of how a person pictures themselves). Intimacy A persons ability to initiate and maintain close intimate relationships which includes the ability to give and receive affection needed to successfully interact in the role as intimate partner. Sexual health* A persons ability to develop, manage, and maintain routines for sexual health including practicing safe sex and identifying, understanding, selecting, and use of contraception. Family planning* A persons ability to develop, manage, and maintain routines associated with fertility, pregnancy, and/or parenthood. Note. *Sexual health & family planning are combined into one section of the OPISI, but separated within the OTSAF to delineate how each aspect fits within the scope of practice for occupational therapy. OPISI: A DELPHI STUDY 30 Table 2 Description of expert panelist (n=34) Category n Percentages Year 1-5 8 24% 6-10 7 20% 16-20 3 9% 21-25 4 12% 26-30 6 18% 31-35 3 9% 36-40 2 6% Geographic Locations Northeast 9 26% South 9 26% Midwest 11 32% West 4 12% Other 1 3% Primary Work Setting Academia 14 41% School 2 6% Freestanding Outpatient 6 21% Home Health 1 3% Hospital Non-Mental Health 5 15% LTC 1 3% OPISI: A DELPHI STUDY 31 Mental Health 4 12% Neuro 1 3% How often do you address aspects of sexuality and intimacy with your clients? Always 2 6% Very Frequently 8 24% Occasionally 19 58% Rarely 5 15% Do you feel that providing clients with information to increase their understanding of how their illness, injury, disability, or life stage may influence their expression of sexuality, interaction with their partner(s), and participation in sexual activities is within the scope of occupational therapy practice? Definitely Yes 32 94% Probably Yes 2 6% Do you feel that providing clients with specific suggestions on how to modify or improve performance associated with expression of sexuality, interaction with partner(s), and participation in sexual activities is within the scope of occupational therapy practice? Definitely Yes 30 88% Probably Yes 4 12% OPISI: A DELPHI STUDY 32 Figure 1. Flowchart depiction of all three rounds.  ...

... Title: Experiences of Older Adults Who Age in Place Jenny Ashton, Emma Baldwin, Ariel Galliher, Molly Johnson, Allison Trimpe December 2020 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: Lucinda Dale, EdD, OTR, CHT, FAOTA Running head: EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE A Research Project Entitled Experiences of Older Adults Who Age in Place 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 Jenny Ashton, Emma Baldwin, Ariel Galliher, Molly Johnson, Allison Trimpe Student Researchers Approved by: Lucinda Dale Dec 11, 2020 Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate DeCleene Huber Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Dec 11, 2020 Date 1 EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE Experiences of Older Adults Who Age in Place Jenny Ashton, Emma Baldwin, Ariel Galliher, Molly Johnson, Allison Trimpe University of Indianapolis 2 EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 3 Abstract The older adult population in the U.S is expected to increase to 78 million by 2035. Data show that many are choosing to age in place rather than to relocate to facilities that provide assistance. No single factor has been found to predict older adults' decisions to age in place. The purpose of the study was to understand the experiences of older adults aging in place. The investigators used a qualitative design and gathered data from three participants through semi-structured, photoelicited interviews. Researchers analyzed transcriptions through coding, and ensured triangulation, trustworthiness, and rigor. Participants were 65 years or older and shared their experiences of aging in place. Two participants lived with their life partners and one participant lived alone and was widowed. Unique themes from the three participants included competence and autonomy, family and legacy, surrounding community and environment, personal space and home setup, social needs, and positivity. The findings showed that home is a reflection of selfidentity, autonomy, personal space, family relationships, and leisure activities. The results can guide occupational therapists in providing client-centered care when working with older adults who prefer to age in place. EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 4 Experiences of Older Adults Who Age in Place According to the Centers for Disease Control and Prevention (2015), older adults are 65 years or older and Medicare eligible. United States (U.S.) Census Bureau (2017) data predict that the older adult population in the U.S. will increase in numbers from 49.2 to 78 million, between 2016 and 2035. Data from the Joint Center for Housing Studies of Harvard University (2014) show similar trends, indicating that the number of adults older than 75 years and living alone will double from 6.9 million to 13.4 million, and be mostly women. According to Lien, Steggell, and Iwarsson (2015), more older individuals within the U.S. are living independently in community housing, such as condominiums or houses, which allows for aging in place rather than moving to supportive living environments such as nursing homes or assisted living facilities. Aging in place is defined as remaining living at home in the community, with some level of independence (Davey, de Joux, Nana, & Arcus, 2004, p. 133). Although the older adult population increased in 2010, there was a 20% decrease in older adults residing in nursing facilities (Joint Center for Housing Studies of Harvard University, 2014). The decrease may have been a result of older adults preferring to age in place. Successful aging was identified as related to aging in place, and is defined as multidimensional, encompassing the avoidance of disease and disability, the maintenance of high physical and cognitive function, and sustained engagement in social and productive activities (Rowe & Kahn, 1997, p. 33). According to the U.S. Department of Housing and Urban Development (2009), living in a nursing home cost about an additional $4,500 when compared to aging in place. Aging in place could provide financial savings for families, the government, and the healthcare system because Medicaid or Medicare coverage could drastically reduce the need for out-of-pocket payments when older adults age at home (Lee, Parrott, Giddings, Robinson, & Brown, 2017). Other EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 5 researchers have also shown that aging in place was a less expensive alternative for families (Szanton, Leff, Wolff, Roberts, & Gitlin, 2016). According to researchers, older adults chose to age in place to ensure continued independence, security, privacy, and pride (Ewen, Hahn, Erickson, & Krout, 2014; Kwon, Ahn, Lee, & Kim, 2015). Additionally, older adults chose to age at home for the sense of belonging in their homes and surrounding neighborhoods, and the social interactions that were available in their living environments (Campbell & Kim, 2016; Kwon et al., 2015). Aging in place often became increasingly difficult as individuals health and functional abilities declined; however, knowledge about the benefits of home modifications and how to implement them improves older adults abilities to age in place successfully (Ewen et al., 2014; Lien et al., 2015). Studies indicated that the health, socioeconomic, and demographic status of individuals influenced their behaviors and perceptions related to their decisions to age in place (Ewen et al., 2014; Kwon et al., 2015). Occupational therapists deliver cost-effective, client-centered interventions for older adults who want to age in place; home-based interventions include teaching bathing and toileting techniques, removing home hazards and environmental barriers, and implementing home modifications (American Occupational Therapy Association [AOTA], 2016; Kennedy, Arcelus, Guitard, Gourban, & Sveistrup, 2015; Lien et al., 2015; Stark, Keglovits, Arbesman, & Lieberman, 2017; Stark et al., 2018). Occupational therapists can work to prevent injury, establish new skills, modify the environment or task, and adapt lifestyles, to address the challenges of older adults with low vision and ensure participation in daily occupations (AOTA, 2020b). Occupational therapists also provide resources and services for older adults to help them transition from driving to using alternative transportation, in order to allow them to access their EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 6 communities and maintain their independence (AOTA, 2020a). As a part of interprofessional, home-based interventions, occupational therapists helped reduce nursing home admission rates and supported the ability to age in place (Szanton et al., 2016). Researchers have also shown that individuals who receive occupational therapy services during hospital stays are less likely to require hospital readmission because of training, recommendations, and interventions that increase safety and independence to support their return to their home environments (Rogers, Bai, Lavin, & Anderson, 2016). To measure aging at home, researchers have used the Housing Enabler (HE) and the Neighbourhood Environment Walkability Scale (NEWS) to assess environmental barriers, the Geriatric Depression Scale (GDS) to assess depression, and the Short Physical Performance Battery (SPPB) to assess disability and functioning (Ajit Singh, Ibrahim, Palaniappan, Zhen, & Shahar, 2018; Lien et al., 2015). Researchers also used fall risk assessments and gait speed tests to assess physical ability, and questionnaires about variables of housing and home safety checklists for evaluating home characteristics and safety (Ajit Singh et al., 2018; Chacko, Thangaraj, & Muhammad, 2017; Kwon et al., 2015; Lien et al., 2015). Researchers found that although housing characteristics increased older adults' desire to age in place, most houses were not a match between a person's characteristics and their environment (Ajit Singh et al., 2018; Chacko et al., 2017; Kwon et al., 2015; Lien et al., 2015). Additionally, results have shown that most houses had unfavorable built environments that contained fall risks and did not improve physical mobility and independence (Ajit Singh et al., 2018; Chacko et al., 2017; Kwon et al., 2015; Lien et al., 2015). Research concerning aging in place for older adults in the U.S. shows that older adults desire to age at home despite the difficulties they encounter in doing so (Campbell & Kim, 2016; EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 7 Lien et al., 2015). Researchers in other countries have studied the reasons older adults choose to age at home, but researchers in the U.S. have focused on other aspects of aging in place like home modifications and environmental barriers (Ajit Singh et al., 2018; Davey et al., 2004). Therefore, in the current study, researchers used a qualitative design to examine the value of, and reasoning for, older adults in the U.S. deciding to age in place. Due to the increasing number of older adults in the U.S. and the increasing popularity of aging in place, understanding why these individuals want to remain at home as they age is important for guiding future policies, family decisions and interactions, and occupational therapy assessments and interventions. The purpose of the study was to understand the experiences of older adults aging in place. Review of Literature In the reviewed literature for the current study, researchers found that physical, structural, environmental, and economic barriers can limit aging in place and influence older adults decisions to relocate. Although studies have shown that there are barriers to aging in place, older adults often choose to live at home for psychological and emotional reasons. Facilitating factors including access within the home and the community, housing policies, and other accommodations can assist older adults to live at home. Having fulfilled their desire to age in place, they will have also satisfied their needs for independence and a continued sense of selfidentity. For the current study, the reviewed literature includes researchers' findings of facilitators and barriers to aging in place, reasons older adults choose to age in place, and other factors that influence the decision to age in place. Kwon et al. (2015) found that older adults needed satisfactory housing, suitable neighborhoods, and adequate access to services to age in place. Boggs et al. (2017) and Ewen et al. (2014) identified sufficient legal rights, spirituality resources, financial resources, good EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 8 mental health, and a supportive family, as additional facilitating factors to aging in place in the U.S. Transportation to reasonably priced grocery stores, shopping centers, and medical care was also essential for older adults who could no longer drive safely (AOTA, 2020b; Brown & Teixeira, 2015; Gibb, 2018; Kwon et al., 2015). Additionally, safe and secure neighborhoods allowed individuals to be comfortable and active in their communities (Ajit Singh et al., 2018; Kwon et al., 2015). Older adults could volunteer in their communities, which allowed them to use their altruistic traits as a type of socioemotional support, thus increasing their quality of life (Gibb, 2018). Panday, Kiran, Srivastava, and Kumar (2015) also found that older adults who lived at home had better social health than those who lived in assisted living facilities. Prior to moving into their final homes, some older adults sought houses with appropriate accommodations and age-friendly designs to facilitate their desire to age in place (Lien et al., 2015). The older adults who did not plan, later adapted their home environment to support independence at home (Ajit Singh et al., 2018; Brown & Teixeira, 2015; Lien et al., 2015). Having a proper built environment helped preserve the physical performance and functional mobility of individuals during periods of declining physical health (Ajit Singh et al., 2018). Studies indicated structural modifications could be implemented, such as enlarging leg spaces under counters and sinks, lowering light switches, ensuring good lighting, widening doors and hallways, limiting stairs or having a single-level home, installing more versatile cabinets, and making bathrooms easier to use (Brown & Teixeira, 2015; McCunn & Gifford, 2014). Other research showed that a proper built environment in a community facilitated aging in place when ramps at intersections, adequate street lighting, and painted curbs were present (Ajit Singh et al., 2018; Brown & Teixeira, 2015). Ajit Singh et al. (2018) stressed the importance of housing, EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 9 community policies, and community programs that could facilitate aging in place. However, Lien et al. (2015) determined no single factor could facilitate older adults aging in place. Despite the factors that facilitated aging in place, older adults still encountered barriers and employed compensatory strategies to address the barriers (Lien et al., 2015). One compensatory strategy was avoidance of the restricted action or challenging activity (Lien et al., 2015). Another strategy older adults used was accommodation of the activity, using assistive devices, alternative technologies, or family assistance (Lien et al., 2015). Peek et al. (2016) found that older adults had varying perceptions about using technology, but all participants benefited from technology to live independently, perform daily tasks, communicate with others, and stay physically active. Older adults sometimes used the internet to locate tradespeople to help them with home maintenance (Coleman, Kearns, & Wiles, 2016). When there was a lack of natural facilitating factors, older adults modified their behaviors to overcome barriers to perform their daily tasks (Lien et al., 2015). Researchers determined that the facilitating factors that predicted successful aging in place, could not predict who chose to age in place (Ewen et al., 2014). In rural Australia, Stones and Gullifer (2016) examined barriers to aging in place and found that a major limiting factor to aging in place successfully was physical frailty and lethargy. Ewen et al. (2014) showed that declining health was a barrier to older adults performance of activities of daily living (ADL) within their homes in the U.S. In Malaysia, Ajit Singh et al. (2018) determined that older adults experienced decreased physical performance within their built environment. Brown and Teixeira (2015) indicated that structural problems and poor home designs were important limiting factors that caused older adults to leave their homes. Studies showed that yard work requirements and building repairs to maintain and upkeep the home were EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 10 strenuous and caused stress to older adults as their bodies aged (Brown & Teixeira, 2015; Coleman et al., 2016). Researchers determined that limited accessibility due to poor structural neighborhood designs also hindered daily routines and physical functioning (Ajit Singh et al., 2018). Ajit Singh et al. (2018) found that these limitations resulted in a decreased physical activity level, decreased motivation, increased likelihood of obesity, and increased fall risk (Ajit Singh et al., 2018). Researchers identified that the prominent barriers in neighborhoods were poor lighting, heavy traffic, and excessive noise (Ajit Singh et al., 2018). Inaccessibility to adequate health and social services was also found to be a major barrier to aging in place (Boggs et al., 2017). Panday et al. (2015) showed the necessity for older adults to have access to health facilities in order to address problems or injuries that arose due to declining health. Additionally, Boggs et al. (2017) determined that older lesbian, gay, bisexual, transgender, and queer (LGBTQ) individuals in the U.S. often experienced discrimination and stigmatization that restricted access to social and health services. In Canada, Brown and Teixeira (2015) determined that inadequate access to transportation and community services hindered older adults abilities to age in place. Transportation and accessibility to adequate services was increasingly difficult for older adults who lived in remote regions of rural Australia (Gibb, 2018). Sometimes families assisted with transportation and community mobility, but other studies indicated that cases of stressful family relationships and a lack of family support limited accessibility and led to increased isolation and poor psychological well-being (Boggs et al., 2017; Panday et al., 2015). Researchers determined that as older adults faced isolation, limitation, lifes loss, and transformation, low life satisfaction and depression often impacted their quality of life (Gibb, 2018; Panday et al., 2015). EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 11 Brown and Teixeira (2015) determined a final barrier to aging in place was affordability. Housing affordability and home maintenance costs often dissuaded older adults from aging at home, regardless of their preferences (Brown & Teixeira, 2015). Boggs et al. (2017) agreed, specifying that safe and affordable housing was not always easy to locate. Similar to Brown and Teixeira (2015), Coleman et al. (2016) found that the high costs of home maintenance led to stress and worry for older adults. Older adults living alone and supporting themselves encountered an additional financial strain while aging in place (Panday et al., 2015). Researchers found that older adults relocated to alternative living options when housing quality, safety, and comfort needs were not met (Panday et al., 2015). Old age homes in India provided better environmental health because they included sanitation, electricity, and water (Panday et al., 2015). In addition to adequate facilities, these old age homes provided freedoms, routines, peer groups, and daily activities to engage older adults (Panday et al., 2015). Ewen et al. (2014) found older adults in the U.S. were more likely to consider leaving their homes for assisted living facilities if they were widowed or had few social ties with friends and family. Another study showed the financial benefits of moving away from home, due to lower housing and maintenance costs, greater liquid assets, and easier estate settlement (Brown & Teixeira, 2015). However, two studies indicated the most likely reason older adults would choose to leave home was the need for personal care support to address the challenges performing ADL due to declining health (Ewen et al., 2014; Gibb, 2018). Studies indicated that older adults viewed aging in place as the most desirable option for their futures (Ewen et al., 2014; Gibb, 2018; Stones & Gullifer, 2016). According to Lien et al. (2015), older adults who lived in the Pacific Northwest of the U.S. preferred to age in place because of attachment to their sense of place. Older adults sense of belonging in the broader EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 12 community impacted their emotional connection to place and their homes (Boggs et al., 2017; Brown & Teixeira, 2015; Gibb, 2018; Stones & Gullifer, 2016). Researchers found that homes reminded aging adults of their memories (Gibb, 2018; Stones & Gullifer, 2016). Psychological attachment to home provided motivation to endure the challenges older adults faced while living at home (Ewen et al., 2014). Research indicated that older adults self-identities were reflected in, and blended with, their idea of home (Ewen et al., 2014; Stones & Gullifer, 2016). Similarly, a U.S. study with older adults in the LBGTQ community indicated that it was easiest for older adults to be themselves at home (Boggs et al., 2017). Gibb (2018) found that older adults social interactions within their homes defined their social identities. Home as a family and social hub incorporated meanings of familiarity and comfort, and reminded older adults of their meaning and purpose in life (Gibb, 2018). Data showed that older adults who lived in their own homes independently for as long as possible avoided burdening family members and maintained their self-identities as independent people (Brown & Teixeira, 2015; Ewen et al., 2014; Stones & Gullifer, 2016). Older adults wished to maintain a sense of purpose when aging, and their independence afforded them freedom of choice, familiarity, comfort, autonomy, and privacy (Brown & Teixeira, 2015; Gibb, 2018; Stones & Gullifer, 2016). Additional factors and perspectives influenced older adults desires to age in place, including but not limited to differing life histories, cultural contexts, personal circumstances, accessible resources, and outlooks on life (Gibb, 2018; Stones & Gullifer, 2016). Kwon et al. (2015) found that other influences were the older adults marital status, income, living situation, and number of years in their home. For the baby boomers, age and employment status could significantly predict the desire to age in place (Kwon et al., 2015). In Australia, older adults EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 13 claimed to stay at home due to the natural beauty of their homes and their surrounding environments (Gibb, 2018). In Canada, older adults resisted home modifications due to impersonal and institutional designs, and consequently left their homes when modifications became necessary (McCunn & Gifford, 2014). Due to the strong desire to age in place, the environmental barriers that threatened older adults accessibility and function were interpreted as challenges they could confront and overcome to promote their continued health and strength (Lien et al., 2015; Stones & Gullifer, 2016). Older adults who had active lifestyles overcame obstacles, which promoted independence, and provided opportunities for mental activities and pursuit of interests (Gibb, 2018; Stones & Gullifer, 2016). Older adults claimed it was necessary to have a sense of purpose to maintain their psychological well-being, and aging in place provided them with purpose (Gibb, 2018). Additionally, contrary to the financial disadvantages some researchers identified, some older adults were able to obtain financial advantages through aging in place (Brown & Teixeira, 2015). Related to tenure status, some individuals had increased benefits due to investment, equity, and personal independence (Brown & Teixeira, 2015). Another financial advantage of aging in place was lower relocation costs because one could avoid moving fees and other related charges (McCunn & Gifford, 2014). The affective bond for home was not the only reason older adults chose to age in place despite challenges; the fear of the alternative living options also influenced their decisions (Stones & Gullifer, 2016). Sustaining self-identity at home when faced with change and loss symbolized progress and purpose, whereas other living situations symbolized a loss of independence and a stagnant life (Stones & Gullifer, 2016). Studies showed that the negative experiences of friends or peers at residential care facilities caused older adults to make goals to EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 14 avoid institutionalism (Boggs et al., 2017; Brown & Teixeira, 2015; Stones & Gullifer, 2016). Some older adults heard of experiences at assisted living facilities, where depersonalized care led to humiliating and patronizing experiences (Stones & Gullifer, 2016). Thus, aging in place prevailed as the most attractive option when compared to the possibility of encountering embarrassing experiences and losing autonomy due to required compliance with others (Stones & Gullifer, 2016). Older adults in the LGBTQ community often avoided leaving home to escape anticipated discrimination from residential care providers and services, due to the potential lack of acceptance and understanding from the people providing those services (Boggs et al., 2017). Overall, older adults found change unsettling, and resisting change became a part of the familiar daily routine to maintain independence (Brown & Teixeira, 2015). They viewed moving as a stressful disruption to daily life, especially when they could simply adapt to change in the comfort of their own homes (Brown & Teixeira, 2015; Gibb, 2018). Occupational therapists, or anyone assisting those aging in place, should not simply address the barriers and facilitators; they instead should view the holistic matches between older adults characteristics, values, and their environments, to determine how to best help individuals age in place (Lien et al., 2015). Researchers in the U.S. have shown the effects of the barriers and facilitators to aging in place but have not determined why older adults desire to age in place. To fill the lack of research in the U.S., the current qualitative study addressed why older adults chose to age in place despite the challenges and limiting factors that may dissuade them from doing so. EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 15 Methodology Study Approach / Design Researchers used photo-elicitation and semi-structured interviews for the qualitative study, similar to the methodology reported by Breeden et al. (2019). Researchers utilized a phenomenological, case series design to identify themes from data collected (Taylor, 2017). Participants. Researchers recruited three participants by posting fliers around a Midwestern private university campus, and by word of mouth. Three participants were included because of the qualitative, case series design that allowed for the in-depth study of a few participants (Portney & Watkins, 2009). Participants were included if they were: (a) 65 years or older, (b) English speaking, and (c) homeowners of the same home for a minimum of five years. Participants were excluded if they were living in assisted living facilities, skilled nursing facilities, or senior living apartments. During the informed consent process, researchers instructed individuals how to use the provided digital point-and-shoot cameras. Participants were included if they were willing to take photographs. Researchers reviewed and implemented alternate methods of picture-taking for one of the three participants. Additionally, the informed consent process included participants giving researchers permission to display de-identified photographs. Materials / Measures Instruments. The primary method of data collection was a semi-structured photo-elicited interview conducted by the researchers, which took place in the participants home or in another convenient location. Photo-elicitation was a structured method of data collection in which participants used a camera to photograph images of their environment (Breeden et al., 2019). A card was attached to each camera with step-by-step instructions and the predetermined prompts EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 16 for photo taking (Breeden et al., 2019). According to the American Occupational Therapy Association (AOTA), photo-based research methods are beneficial to show visual information and provide participants with reflection opportunities (2017). Researchers designed semi-structured interview questions that can be categorized as descriptive, contrast, or categorical, according to Spradley (1979). Additionally, researchers designed the content of questions according to Breeden et al. (2019). Once researchers developed interview questions, they sought feedback from experts to refine question content and phrasing (see Appendix A for question list). Procedures Training. Researchers conducted mock interviews during training to ensure that each researcher asked interview questions similarly. Additionally, researchers discussed and agreed upon procedures for utilizing photo-elicitation, including the use of the cameras and secure digital (SD) cards. The research team reviewed the Health Insurance Portability and Accountability Act (HIPAA) guidelines; all researchers completed The Collaborative Institutional Training Initiative (CITI Program). Data collection. Participants captured photographs as a response to the following prompt: Please take pictures of your experience of living in your home. Participants who needed further explanation were asked to take pictures of areas within their homes that they wished to share with the researchers. Researchers then uploaded photographs to a password protected computer (Breeden et al., 2019). Each of the three participants was present for three semistructured, photo-elicited interview sessions, conducted within the participants' homes or at a location convenient for the participants (Breeden et al., 2019). Interviews with two of the three participants occurred within participants homes and allowed researchers the opportunity to EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 17 supplement qualitative data with observations of their homes. One pair of researchers conducted and audiotaped each interview for a single participant. During and immediately after each interview, researchers recorded field notes to direct additional interview questions and photo assignment guidelines; researchers also wrote memos to record impressions during and after interviews (Portney & Watkins, 2009). After researchers conducted the interviews, they transcribed the sessions for analysis. Researchers collected data until saturation was achieved. Data analysis. Researchers collected and analyzed data concurrently according to recommendations of Portney and Watkins (2009) for qualitative inquiry. Data collection and analysis occurred during a 27-week period, providing time for researchers to immerse themselves in interpreting the data. Researchers used an inductive approach to data analysis, ensuring triangulation through the use of multiple data collection methods, researchers, and sources of data (Portney & Watkins, 2009). Researchers independently analyzed transcripts after each interview, then collectively identified themes and new questions for subsequent interviews (Stones & Gullifer, 2016). Researchers ensured the trustworthiness of the data and analyses through completing member checking; participants reviewed transcripts and thematic analysis after each interview (Breeden et al., 2019; Portney & Watkins, 2009). After the researchers member-checked all interviews and themes, and no additional themes emerged, they created a final identification of themes. Researchers created an audit trail to document analyses of all data collected (Portney & Watkins, 2009). Researchers ensured rigor during data analysis through using multiple coders and member checking (Taylor, 2017). They also compared the determined themes to the review of literature and determined whether the findings were logical (Taylor, 2017). Researchers ensured EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 18 coding was consistent among the research team and between the participants (Taylor, 2017). During analyses, researchers employed bracketing to identify and separate their own assumptions about aging in place from the findings (Finlay, 2014). Researchers also reported any experiences that did not fit the established themes (Tanner, Tilse, & de Jonge, 2008). During data analysis, researchers assigned pseudonyms to participants to ensure anonymity. Results Participant 1: Mark The researchers identified four themes from Marks interviews and photographs of home: competence and autonomy, family and legacy, surrounding community, and personal space. Researchers interviewed Mark within his home, which provided observational data to supplement the photographs he took. Mark was a 65-year-old White male who lived in a small suburban neighborhood. He lived in a one-story home with his wife. His past work experience included serving as a teacher and school administrator and at the time of the study, he worked part-time as a field investigator for a utility company. He enjoyed construction and home design projects, performing music with his band, gardening, and spending time with his family. In his descriptions of home, Mark also described the impact of the diagnosis of possible early-onset Alzheimer's disease and current mild cognitive impairment, in relation to his decisions about living at home. Mark shared his thoughts regarding his future living situation and the possible necessity of moving to a facility if his cognition continued to decline, but shared that potential interesting alternative living options may be out of his budget. Appendix B shows selected photos from Mark. EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 19 Theme 1: Competence and autonomy. The first theme researchers identified within interviews with Mark was competence and autonomy. He found comfort in his ability to maintain autonomy while aging at home, as it allowed him the freedom to make his own choices. Home allowed him to do what he wanted, how he wanted. He emphasized this as he stated, it just feels good to be in your own bed and have your refrigerator and your own remote control and stuff. He elaborated about the freedom and competence he felt from the familiarity of his home, as he described, "I can change the channel whenever I want to, and when I am thirsty I can go to the refrigerator and my favorite drink is there for me. Size was a primary consideration when choosing his current home, to allow for autonomy in maintaining his home as well as the ability to personalize his space, as he stated, we wanted something small and simple that we could make really special something that we could take care [of] and make it just what we wanted it to be. His former position as a shop teacher gave him skills to remodel rooms, and perform home maintenance and repairs. He preferred making his own home repairs and remodeling, explaining, it would be a lot more of a hassle if we always had to hire to have stuff done, and if we had to worry about that kind of stuff. Driving to local businesses to purchase supplies for home repairs was part of Marks daily routine. He stated, I usually have some kind of chore [each] day I am fixing or working on or something I probably average [one trip per day] to Home Depot or one of those places. However, Mark admitted that his time spent performing home maintenance was time he would rather spend doing other occupations. He said, It can just be a nuisance mowing the grass and that type of stuff. It always has to be done when you would rather be doing something else. Despite the drawbacks, Mark continued to do most of the repair work and home maintenance with very few exceptions Researching online enabled him to remain autonomous as well, as EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 20 he stated, anytime I am ever thinking about fixing something there is always a YouTube video showing [me] how to do it. Similar to his father, who had a passion for learning by reading encyclopedias, Mark had done a lot of research in [his] career and [his] life. His ability to use the computer for YouTube and Internet searches offered him the ability to be autonomous for home repairs, and fascinated him through continual learning and exploration of leisure interests and home maintenance projects. He also recognized that aging had negatively impacted his physical skills, as he stated, [lawn work] gets harder as time goes by. As a consequence of physical declines, he considered hiring help or purchasing a riding lawn mower to reduce the energy demand. In addition to physical decline, he also recognized mild cognitive impairments that he expected to worsen. He was concerned about maintaining autonomy in financial matters and avoiding possible family conflict about finances in the future, so he documented all of his financial matters in a nice neat package. Mark described observing his mothers cognitive decline and loss of autonomy, and the impact on his dad. We were afraid that if [my mom] didnt go into a nursing home then we would lose [my dad] because of all the stress and pressure it was putting on him, because he was taking care of her. Caring for his wife disrupted Marks dads routines as he had stopped doing a lot of what he enjoyed doing. Moreover, his dad could not experience major life events such as the death of his sister. Mark described, Dad had to stay strong and didnt even have a chance to grieve because he was trying to protect mom from getting hurt. Mark observed that when his dad moved his mom into a nursing home, it lessened his dads stress and restored some of his autonomy. This experience prompted Mark to investigate nursing homes during his second EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 21 marriage. He expected to need a nursing home in a few years, which prompted him to plan and determine the proper facility for his future to avoid potential family dissonance. Theme 2: Family and legacy. Another important theme researchers identified during interviews with Mark was the importance of family and legacy. He and his wife chose the location of their home because of its central location in relation to his family. He also liked the location because he grew up in [the city] as a kid always liked [the suburb] and this area, but when [he] was a kid [the area] was more country-ish. Family influenced the location of Marks home, yet he also included his family in the process of making additions to his home, with the intention that it would be a consistent connection from the past to the future. He showed the interviewers a family heirloom displayed in his house from his parents 50th wedding anniversary. Mark also showed interviewers a swing he built with his family, and he said he got almost all of the grandkids to help [him] with different parts it will be there forever. He wanted to ensure that his grandchildren could enjoy it for years into the future. Within the first five years of it existing, he said many of the little grandkids [had] kind of grown-up swinging on that swing. The swing was important for him to build when he worried about his health because he wanted [the swing] there to have a place to rock the grandkids. Mark also planted a red maple tree, which was perhaps the most representative of his intent to maintain a family legacy. As he showed researchers his yard, he stated his reason for planting the tree was because thats when I thought I was going to be sick and stuff. I thought that would be something for the kids to remember me by. Marks entire family valued his home, almost as much as himself and his wife. He stated, when we have [a] family get together or have a cookout here, [the patio] is usually where we eat and stuff. His granddaughter often used their house and outdoor setup, as he said, she always EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 22 wants to eat outside, so when she was here the other day we ate out there. His granddaughter valued his house so much that she said shed buy the house when they needed to sell it. He recited his granddaughter's offering, Ill do your yard work, you wont have to do it whatever you do dont sell it. Theme 3: Surrounding community. Another theme researchers identified within interviews with Mark was the surrounding community. Proximity to their regular restaurants supported the routine of eating out frequently, as he claimed, thats what we like about it, we can be downtown [in the city] in 13 minutes. Mark described, We are always going out to dinner, or to shopping or something it is pretty much true because we are just so spoiled we almost always eat out. Eating out also meant spending time with family: about half of the weeks, my brother and his wife and I go out for dinner or drinks or something. Marks home was also accessible to a shopping mall and home improvement stores, which supported his home maintenance tasks. Although his home provided access to local businesses, Mark also appreciated that his residence was in a location that ensured a quiet environment. He stated, our neighborhood itself is pretty isolated we have a circle drive here so we dont get any traffic or anything. It's quiet. We like that. He did not choose his quiet location because of its diversity, but he proudly described his community as changed through time in positive ways, because his neighbors represented different faiths, ethnicities, traditions, and sexual identities. These positive changes contrasted with his childhood experiences and his parents experiences of diversity in the area, as he stated, when I was a kid, if there was someone from another culture or something within our neighborhood, it was a big deal. Mark identified that not everyone was as accepting as him, EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 23 but he thought that all of the people within his current community are good people and good neighbors. The community also provided Mark with access to resources related to his declining cognitive skills: the Alzheimers association [is] nationwide, but particularly in Indiana they are just awesome. Access to a non-profit organization called CICOA Aging and In-Home Solutions also provided Mark and his wife with support in the local community and at home. He said, not all states have something as good as CICOA. He and his wife talked with a representative from CICOA to get recommendations for nursing homes in case they needed it, and he stated his appreciation for the really good resources in Indiana especially. Theme 4: Personal space. Personal space was the final theme researchers identified as important to Mark. His past experiences influenced what he thought living in his own home should look like. He witnessed his mothers rapid health decline during her transition to living in a nursing home. He said, once she got in a nursing home, she got so much worse because nothing was familiar and nothing was really important to her. It made it harder to remember things. Mark emphasized the importance of personalization within his home as he compared it to the loss of meaning when living in a facility: When you are placed in a sterile environment or placed in someone elses facility, you kind of lose track of who you are You lose track of the things you care about and [things] you dont care about everything is here [at home] because they are things we wanted to put here, so this is our little dream home. Everything means something. Making home personal was so important to Mark that upon reflection, he suggested adults who had to leave home would benefit from assistance to personalize their space in an alternative living facility. Mark described multiple home redesign projects he had completed to personalize EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 24 their home to meet the needs of himself and his wife. They redesigned the sunroom of the house as an extension off the living room, so it could be used often. He stated the following: When we bought the house we reversed the doors, redid the floor, and I did the siding. It was all just plain wood and we put all the [decorations] up there. Oh, and it didn't have any wiring so I put electrical outlets and the heater back there. The ceiling fan and light we added. So we just like it out here. Through customizing spaces in their home, Mark also had more personal space to participate in leisure pursuits. He created a music room to spread out his instruments and get back into his leisure interest of playing guitar. He called that room the equivalent of [his] man cave or [his] space. The garden was personalized to their liking, which made it special to him and his wife because it makes your house your home. He also showed interviewers the hand-crafted schoolhouse and garden shed that he built and stated that it was unbelievable how much it cost [him] to make that and how much time it took. Beyond the physical descriptions of personal space at home, Mark described "the comfort and warmth of being home. He identified that home was a feeling, rather than just a physical space. As he aged, his love for comfort became more pronounced, as he stated at the end of the evening it just feels so good to be home. It just has a special feeling to it and the older you get the more you feel that. The participant believed that the comfort and familiarity with his home that had formed over time, aided aging in place. He also appreciated the outdoor space, as it gave him and his wife a place to relax. He stated that the easiest thing [about living at home] is probably just the comfort and the familiarity of everything. EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 25 Participant 2: Susan The researchers identified three themes from Susans interviews and photographs of home: autonomy, social needs, and positivity. Researchers interviewed Susan within her home, which provided supplemental observational data. Susan was a 97-year-old White female who lived in a neighborhood primarily of older adults. At the time of the study, she lived in a onestory home alone, with the support of her family who lived five minutes away. Her prior work experience included teaching 16 years of Home Economics courses to adults, as well as teaching grade school students. She enjoyed playing bridge, collecting antiques, quilting, socializing with friends, and spending time with her family. Susan described significant visual decline during the five years prior to the study, which resulted in her inability to drive and participate in her chosen leisure activities. Prior to her husbands death from Alzheimers four years before the current study, Susan and her husband lived at an assisted living facility. In contrast to her home, Susan described this facility as expensive, having poor quality, and noisy. Appendix C shows selected photos for Susan. Theme 1: Autonomy. The first theme researchers identified within the interviews with Susan was autonomy. Susan noticed her friends experiencing a loss of autonomy when they moved to alternative living facilities; therefore, Susan fostered positive views of the autonomy living in her own home afforded her. She also had negative experiences involving a lack of autonomy when she lived in an assisted living facility with her husband, and when she moved him into a nursing home. She disliked being subjected to others structured routines and hovering, contrasted to "running her own life" while she lived at home alone. She stated, when you're living in [an] organized community development, I don't care what they say. It's not your home, it's their home, and they want to tell you what to do. She contrasted her current EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 26 home to the community housing she lived in with her husband and stated that the difference was night and day. The best thing about living in her own home was being able to function as you want to when you want to. Susan had also visited friends who experienced being confined in nursing facilities, as she stated it is necessary for them to be in a nursing home, I think that [it would] just do me out. I think I could plan to disappear in two weeks. Susans nearby family members enabled her autonomy at home, as she stated, Im not actually alone - Im with my family. Multiple family members lived within five minutes, which she claimed made all the difference in the world. When her vision declined, Susan stated that she wished she could just get into the car and run up and do that, but instead she had to turn to her family for transportation and community navigation. Due to her visual impairments, she shared, I cant recognize the scenery or the community but if they tell me where we are then I can guess about where were going. When she needed items from the store, she said all she has to say is pop and her family retrieved it for her without causing her an agonizing time of having to wait a week to get what [she] wants. If her daughter could not do so, she stated I have a nice cleaning lady that would do it, or if they couldn't do it, my grandson would be happy to do it, and his wife. She repeatedly recognized how fortunate she was and stated that the convenience of family supported her ability to remain at home, and her positivity towards doing so. Her familys proximity and willingness to help enabled her to do things she wanted to do, in addition to the things she needed to do. When her husband began to exhibit symptoms of Alzheimers, instead of playing golf with him, she stayed home and began quilting to spend time with him. As Susans vision deteriorated, her daughter acted as her eyes and chose the colors for her to design her quilts. Susan also adapted her sewing machine by adhering tape in order to EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 27 feel the direction she was sewing. Quilting became an important leisure occupation for her, so she was grateful for her daughters help in continuing to allow her to quilt as autonomously as possible. When Susan would go out to eat with her daughter, her daughter read her the menu so she could decide what she wanted. However, Susan did not appreciate when the staff would ask her daughter for her order, as she stated it makes her feel like Im not there. She preferred to place her own order independently, and she said, Ive got a little sense and can talk for myself, that always makes it a little more enjoyable too. Susan was also unable to see her phone or her computer, so her family purchased and set up Amazon Alexa so she could play music and communicate with her family through voice command. She continually emphasized her appreciation for her family in helping her maintain her autonomy. She said I know some families don't get along, which I was a member of one that didnt [when I was growing up]. But this family is very cohesive So that's the difference in my life. In describing her current home, she emphasized that her memory of the layout was critical to maintaining autonomy as her vision deteriorated. Relocating to a facility would necessitate relearning her environment. She identified that the layout of her home was an important aspect of choosing her home, and this home had a spacious floor plan and proved to be very good because [she has] space to put everything and [she] can remember where [she] put things. Her visual challenges tested her memory and independence, but she said, it helps keep you young because you have to be alert. You cant just sit and think oh well feeling sorry for yourself. Thats not going to get anything done. Theme 2: Social needs. The next theme researchers identified for Susan as important to aging in place was social needs. Social participation with friends, as well as being generous to others, helped her feel fortunate. Due to her age, most of her peers had passed away, so it was EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 28 important for her to maintain friendships with younger generations. She stated that her large support system included many family members, her work friends from teaching, her neighbors, her friends from bridge club, and friends of her daughter and son and their families. She stated that the young people who checked up on her make a big difference in my life. Family met some of Susans social needs, as she stated her grandson was the best storyteller and her great-grandkids talk a lot. She acknowledged social participation as a way to combat the mental challenges of enduring her spouses deteriorating health, as she said you cant ignore the fact that you get depressed because your life is not living with a man you loved you just kind of go into yourself. She learned to use a computer to keep in touch with people at that time, but she stated when my eyesight got bad, that was the worst thing I had to give up because I could find myself away from the rest of the world. After that, socialization through visits with younger generations of friends and family helped her cope, as she said, I always was around enough young people that the [anger and frustration] never happened to me. Susan shared that sometimes her granddaughter would bring her great pals to her home for a wine party. She also found talking on the phone to be an enjoyable positive social interaction. She used her Amazon Alexa or would pick up the phone and call somebody for no reason [other than] the fact that I want to keep in touch. She understood that her friends appreciate the fact that [she] still remembers them. Susan expressed her strong desire to help others and used social outreach to do so. She believed helping others was a responsibility, as she stated, however small it seems you never know what a gigantic boost it could give to someone so you cant overlook just minor little things because they are very important. She found keeping in touch with friends fulfilled her duties to them. For some friends, Susan provided intentional social support through the topics EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 29 she brought up. She stated, I kind of have to rehearse in my mind what Im going to say before I call her because shes so depressed so I try to bring up happy things she is lonesome Im sure. She also viewed her leisure pursuit of quilting as a method of social outreach when she began to give quilts away to her young friends and donate them to organizations. She described her thoughts, as follows: Just makes me so happy that I can give these away to the young people that have lets say nothing. A lot of them have nothing and this gives them something that is theirs its new, nobody has used it before, and it gives them joy. Thats my goal about quilts. She also hand-delivered the quilts that she made for others, and she loved being in a different environment like that occasionally. Theme 3: Positivity. Positivity was also an important theme researchers identified within interviews with Susan. Positivity allowed Susan to age in place despite challenges, as she said her philosophy of life was to remember the good times and try to forget the bad. She identified that her philosophy was a lot easier said than done, but she chose to view life in a positive way regardless. Susan also described her interpretation of the sign today is the first day of the rest of your life. To her, the inspirational quote meant the current day can always be better than the previous. Susan stated it buoys [life] up if you look at it that way. She further explained, I have to concentrate on the fact that the sun came up and everybodys still here that I love and adore. The memories behind objects in her home also provided Susan with positivity. Susan discussed many of her antiques with researchers, identifying the meaning of each. After the death of her husband, she brought back good memories by looking at objects and remembering when and where she got them. She stated the following about her collection of rare irons: EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 30 Life wouldnt amount to a damn if you just thought about all the bad things. You have got to think of all the good things. So when I look at those irons, I think that was a good day when we did that we went out to lunch and had fun. Susan placed signs with mottos and quotes around her house to reinforce positivity and memories. She displayed multiple quilts around her house, as quilting was one of the first activities after her husband became sick that helped her decide that there were things you could do that not necessarily left a trail for you, but inspire people to maybe try to do it themselves. In summary, Susan emphasized her need for positivity and stated, every home weve had, some joyful event has happened people come to see you at your home, or you have things in your home that you love. Participant 3: Larry The researchers identified four themes from Larrys interviews and photographs of home: autonomy, surrounding environment, home setup, and family. Researchers interviewed Larry at a location outside of his home for the convenience of the participant. Larry was a 68-year-old White male who lived in a suburban neighborhood, in a 2-story home with his wife. His past work experience included teaching high school students, delivering packages, and working in human resources. At the time of the interview, he worked part-time. During discussion of his experience in aging at home, he reported knee pain and a prior surgery that impacted his leisure participation. He enjoyed participating in active outdoor activities, hosting visitors in his home, and traveling to visit family. Appendix D shows selected photos for Larry. EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 31 Theme 1: Autonomy. The first theme researchers identified within the interviews with Larry was autonomy. Speaking for his wife and himself, Larry stated, we both value our independence and recognize that at some point [we] may need assisted living health is not an issue at this point, so we are just going to age at home. He also stated the following: It doesnt matter who you are, you may get to the point where you need [assisted living]. We are in no rush to do that, so we think that if we take care of ourselves and stay reasonably healthy, we can avoid that for another 10-15 year[s]. When searching for his current home, he and his wife recognized that their health could deteriorate as they aged, which contributed to the preferred design of the home they chose. He said they wanted a master bedroom on the first floor so they didnt have to go up and down the stairs all the time. Although both of [them could] negotiate the stairs, [they] knew at some point that might be a problem. Larry preserved his autonomy through performing his own home maintenance but recognized that he may need to avoid tasks that risked injury as he aged. Once a year, he cleaned out his gutters, but because his house was a 2-story home, he had to climb a ladder to reach the top. He described the task, Its a little bit intimidating, especially in front of the garage where if you fell, it is all concrete as I get older and my balance gets less and less, so I try to avoid those things. Larry said his wife was handy and they worked together to re-stain and replace wood on their porch, and elaborated, we still do a lot of things ourselves. He further described the help his wife provides in home maintenance, and stated, [She] actually likes to mow the grass, and I dont get to mow it very often but she likes gardening planting things. However, when he considered aging in relation to mowing the grass, he stated, when I was a kid, everybody mowed their own grass. Nobody even thought about having someone come in EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 32 and mow, but those things have changed. Compared to his prior homes, it was important for them to choose a home that reduced yard maintenance requirements. He claimed that it took them a few hours to mow an acre of grass where they lived before, but now could mow about a third of an acre in about 40 minutes, as they didnt want to mow that much grass. He identified technology as facilitating their independence, due to its assistance in researching health insurance and accessing healthcare professionals remotely. He also used technology to assist him with home maintenance: My wife is really good at going to google and figuring out how to fix the dishwasher. Probably better than I am at that part of it looking it up. I can fix it, but shell be able to investigate and look it up and figure out what is the matter with it. Larry and his wife had also repaired the hot water heater using google as a resource. Theme 2: Surrounding environment. The next theme researchers identified to be important to aging in place for Larry was the surrounding environment. The house was located near the interstate, which enabled him to easily visit relatives in other states. It was also important for Larry to find part-time work to stay engaged and busy. He knew that the area he lived in could provide him with those opportunities. He and his wife wished to stay pretty close to the downtown area, for convenient shopping opportunities, parks, and restaurants within two miles of their home. Larry and his wife found their community fulfilled their need for safety and security due to prior experiences. He said he wanted to be in a certain area of town and explained, I was more familiar with it. He identified another part of town was not really the best place to live at this point unless something gets cleaned up. The physical attributes of the surrounding outdoor space also influenced Larrys decision to purchase his current home. He said the silence and tranquility it provided, made it just nice to EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 33 be outside. The outdoor setting surrounding his home also provided privacy. The design of the house and its windows provided him with important views of the outside from the interior, as he explained, we got a wooded area behind us so you can see the trees and the squirrel sometimes going back and forth. The outdoor space of the home allowed them to use the space for what they wanted to do. Larry depicted his ability to use the space for a garden and a fire pit, two outdoor activities that he and his wife enjoyed. Home had to accommodate the equipment for their outdoor leisure activities. Larry showed interviewers images of his garage, which contained two kayaks, seven bicycles, two cars, a truck, and three motorcycles. Additionally, extra garage space afforded Larry to store his mower and other necessary lawn equipment, according to neighborhood policies. Their home location allowed them to participate in their favorite leisure activities, especially riding bicycles on a nearby biking path. He stated, being outdoors is just nice whether it is taking a walk in the evening or riding bicycles. Theme 3: Home Setup. Comfort in the setup of the home was another important and continuous theme for Larry. The open space in his house allowed it to feel a little more comfortable. He stated that home allowed for a comfortable place to watch television. The comfort of home was also important to Larry when family and friends would visit. Larry stated that hosting others at home is much more comfortable than meeting at another place, such as a gym or even a church someplace, and playing cards you are at your own home. You have everything you need [at home], and we enjoy that. He summed up his feelings, stating it was home-y. The design of the home also provided space for his wife to enjoy solitary leisure activities. Larry indicated that he spent most of his time in the kitchen and the adjoining living EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 34 room and dining room. He showed interviewers the image of a workshop he put together, and said, [my wife & I] made that like a hobby area a little table and theres some things she likes to do. He described, I have a little workshop downstairs and a little workbench in the garage, so depending on what Im working on we can do a lot of things like rebuilding lamps or taking things apart or hubby stuff. In addition, he identified that having a spacious home allowed them to exercise recreationally, which he described as a strategy to stay healthy and maintain living at home. He elaborated, downstairs we have a stationary bike, a treadmill, an elliptical a total gym downstairs. We have got it just set up like that with a television. Theme 4: Family. The final theme researchers identified during interviews with Larry was the importance of family. When deciding to buy a home, it was important for Larry and his wife to consider their access to family, and families access to their home. The proximity to family enabled Larry to maintain close connections with loved ones. He shared that his family wanted to come back to the city he lived in because his daughter worked nearby, and although his son was in another state, it was easily accessible from their location. However, he mentioned that the long drive to see his son caused some wear and tear but its just a question of family. Due to his location near some family and distance from others, he identified the importance of having enough room that when people came to visit [they] could stay, play cards, and visit for a couple [of] days. When moving into his current home, he upsized to a house that was large enough to comfortably house not only Larry and his wife, but also visitors in multiple bedrooms upstairs during extended stays. He claimed that relatives visited often, as he described, every couple of weeks weve got someone who will stay the weekend with us. Home allowed them to get together in a comfortable environment, as he stated, you can talk and laugh. His spacious home provided leisure activities for the family, and Larry noted that the bonus room EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 35 was used for this function. He showed interviewers photographs of their pool tables and a television that they used when his older brothers came to visit and said, its just something to do as a group. Additionally, Mark tailored aspects of the house towards providing the grandchildren with opportunities to play and make memories with him and his wife as they continued to grow. Larry showed interviewers photographs of toys they had bought that the grandchildren loved to play with. For him, an important aspect of aging in his home and family visiting was the legacy that he hoped to leave in the memories of his grandchildren. He stated the following: When our kids were younger, we would take them [to the park] and make a list of things we were going to find, a yellow leaf, a walnut, an acorn, and wed do the scavenger hunt. Just a lot of good memories from those days. And now that weve got grandkids we want to do the same kinds of things as much as we can, provided we can walk along, provided we can climb the ladder, and provided we can do all those other things. The large house allowed his grandchildren to have plenty of space to play, including the nursery he and his wife put together upstairs. He also shared images of furniture that was modified to accommodate grandchildren as they aged. He demonstrated that the full-size bed with rails on the side stood where a crib used to be when his grandchildren were younger. Efforts to make his home compatible with caring for grandchildren eased the care-giving demands for his wife during extended and frequent stays: we probably babysit with them Ill bet 15 to 20 hours a week. Throughout the interviews with Larry, family remained an important aspect that attached him to his home, due to the comfort it brought and the memories that had been and would continue to be created. EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 36 Discussion Self-identity Self-identity was a pervasive common theme among all participants, revealing why they chose to live at home and closely matching the findings of Stones and Gullifer (2016). Selfidentity was preserved through living at home because participants could maintain roles and valued routines that included participating in leisure and social activities, working part-time, sustaining connections to family and friends, maintaining personalized space, and personalizing the home environment. Stones and Gullifer (2016) also found that living at home preserved selfidentity because of memories associated with the home environment, a finding consistent with Boggs et al. (2017), Brown & Teixeira (2015), Gibb (2018), and Lien et al. (2015), and shown in the current study. Only one of the three participants in the current study was of the age group Stones and Gullifer (2016) studied, as they studied adults 85 years or older. The findings of the current study suggest that younger adults have similar views of living at home that preserves self-identity. Ewen et al. (2014) also found that identity was one of multiple factors that predicted aging in place; however, Ewen et al. (2014) studied a wealthy population from a single Northeast region of the U.S., which lacked diversity. For one participant in the current study, his positive description of his former neighborhood becoming more diverse may have contributed to his sense of place and belonging, an aspect of self-identity not reported in the literature. Researchers have found that a connection to a broader sense of community shaped the self-identity and improved older adults abilities to age in place (Boggs et al., 2017; Brown & Teixeira, 2015; Ewen et al., 2014; Gibb, 2018; Stones, & Gullifer, 2016). The current study demonstrated this finding as participants ate at local restaurants, shopped at local businesses, worked part-time, and enjoyed outdoor leisure activities in their communities. Other researchers EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 37 showed that older adults experience a better quality of life, a connection to community, and a sense of purpose when they use their altruistic traits to volunteer in their communities, which one participant demonstrated was an important part of her self-identity because she made and donated quilts locally (Gibb, 2018; Kwon et al., 2015). As participants in the current study aged physically, socially, and psychologically, they maintained or resumed hobbies and community activities that preserved their self-identities, similar to reports of Gibb (2018). Living at home reinforced these self-identities. Family Family provided participants in the current study with a familiar and powerful connection to home. Similar to the research, family was a reason to live at home for the participants in the current study, as home provided a space for family gatherings and family provided support with challenging tasks as they aged (Brown & Teixeira, 2015; Coleman et al., 2017; Ewen et al., 2014). In addition, due to visual impairments and living alone, family support was the most important factor that afforded one of the participants in the current study the option to age in place instead of relocating. Consistent and frequent interaction with family prevented isolation and low life satisfaction found to be common with older adults lacking family support, as described by Panday (2015). Participants in the current study displayed objects in the home as positive reminders of past events with family; some added objects to the home to help future family members recall those who had passed away. These findings add detail and explanation to the results of others, who reported that home allowed for constant reminders of memories and led to psychological attachments (Boggs, 2017; Brown & Teixeira, 2015; Gibb, 2018; Lien et al., 2015). EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 38 Altering a home environment was primarily intended to support older adults physical independence as they aged, according to Ajit Singh et al. (2018) and Lien et al. (2015). In contrast, adults in the current study chose larger homes or homes that could be modified to provide space for extended visits from family and play areas for children and grandchildren, likewise supporting their roles as parents and grandparents. Support of roles within the family could be viewed as maintaining a part of social identity as described by Gibb (2018). Outdoor space was also strategically used and modified for spending time with family. Similar to the findings of Brown and Teixeira (2015) and Ewen et al. (2014) participants in the current study also chose the location of their home to live near family, allow generations of family to visit, and to enable easy travel to family. Research also indicated that family support, facilitated by physical proximity, was instrumental to successful aging in place (Coleman et al., 2016; Ewen et al., 2014). Autonomy When comparing aging in place to relocating, the participants shared that living at home enabled freedom to make daily choices about how to spend time, maintain important routines, and participate in mentally stimulating activities. These findings match those of Brown and Teixeira (2015), Gibb (2018), and Stones and Gullifer (2016). Participants in the current study planned to avoid institutionalism due to personal negative experiences or conversations of others with negative experiences in care facilities, consistent with the findings of Boggs et al. (2017), Brown and Teixeira (2015), and Stones and Gullifer (2016). Two of the three participants shared their financial concerns about affording relocation, because of the high costs of alternative living facilities, in agreement with Szanton et al. (2016). EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 39 Familiarity was an important factor that enabled aging in place for our participants. Brown and Teixeira (2015) described the psychological importance of familiarity as they stated that seniors are usually calmer, happier, and [more] content when surrounded by familiar things (p. 115). Likewise, participants in the current study described themselves as content and happy because they lived in their homes. Familiarity with resources and shopping in the community allowed participants to do what they wished, which was similar to research (Brown & Teixeira, 2015). A consistent environment within the home provided familiarity, which was a necessity for independently living at home for one participant with visual limitations, in agreement with Rooney et al. (2018). The findings of the current study are in contrast to the literature that indicated declining health was a barrier to aging in place (Ewen et al., 2014; Kwon et al., 2015; Stones & Gullifer, 2016) and that decreasing physical performance could increase fall risk, create inaccessibility, or require relocation (Ajit Singh et al., 2018; Ewen et al., 2014; Lien et al., 2015; Panday et al., 2015). Participants in the current study adapted to physical declines as they chose homes with accessible main floor living space, stayed physically active, and customized living spaces. Some participants planned for aging and created financial plans designed to eliminate the decisionmaking for family members. One participant enjoyed repairing and upkeeping the home, in agreement with Coleman et al. (2016); this finding contrasts with Brown and Teixeira (2015), who reported that home maintenance was often a burden. Similar to Coleman et al. (2016), participants in the current study considered hiring future help for lawn care, cleaning, and maintenance, though only one participant found it beneficial within their current circumstances. One participant chose a home with a downsized yard, in agreement with Brown and Teixeira (2015) who reported that home EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 40 maintenance could cause some older adults to move to a home with fewer maintenance requirements. Participants completed home maintenance projects through online access to resources, such as how-to videos and contact information for tradespeople, similar to findings by Coleman et al. (2016). In agreement with our results, Peek et al. (2015) stated that technology enabled older adults to complete their activities with ease. Limitations The qualitative design with a small sample prevents generalization of the findings to all older adults. Participants' relationships to interviewers included being a grandparent to an interviewer, having a mutual friend outside of the research team, and being a co-worker to multiple interviewers. These relationships and the participants' interest to participate in the study, may have influenced them to share positive information about aging in place, and made them less likely to share negative feelings about doing so. Additionally, participants member-checked transcripts, however, they were unable to member-check interpretations of the data. At the time of this study, the University that approved this research implemented an unexpected mandate of distance learning for students, limiting additional member-checking from the research participants. Conclusion In this qualitative study, three older adults gave in-depth descriptions of aging in place. Rather than investigating home design and modifications, researchers in this study revealed the unique experiences of these older adults living at home despite the challenges of aging. The findings of the study suggested that home reflects self-identity. The results can explain the increasing popularity of aging in place, as they show the importance of autonomy, personal space, family relationships, and leisure activities. These findings may guide occupational EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 41 therapists to apply this understanding in providing client-centered care, when working with older adults who wish to age in place. Development of research to further explore this topic is justified, to confirm and add to the findings, as well as contribute to theory that addresses older adults choosing to age in place. EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 42 References Ajit Singh, D. K., Ibrahim, A., Palaniappan, Y., Zhen, L. S., & Shahar, S. (2018). 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Restoring and sustaining home: The impact of home modifications on the meaning of home for older people. Journal of Housing for the Elderly, 22(3), 195215. doi:10.1080/02763890802232048 Taylor, R. (2017). Kielhofners research in occupational therapy: Methods of inquiry for enhancing practice (2nd ed.). Philadelphia, PA: F. A. Davis Company. EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE 47 U.S. Census Bureau. (2017). An aging nation: Projected number of children and older adults. Retrieved from https://www.census.gov/content/dam/Census/library/visualizations/2018/comm/popprojections-1.pdf U.S. Department of Housing and Urban Development. (2013). Measuring the costs and savings of aging in place. Retrieved from https://www.huduser.gov/portal/periodicals/em/fall13/highlight2.html EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE Appendix A Interview Question List Initial Photography Instructions Please take pictures of your experience of living in your home. Initial Interview Questions Questions that could prompt photo discussion (modified from Breeden et al., 2019): Can you tell me what is in this picture? Can you describe why you included this photo? Additional Interview Questions What would you say brought you to live in this home? Tell us about what is the same or different now compared to 5 years ago with living at home. Whats the best/worst thing about living in a home? Do you notice anything else about living at home? Whats the easiest/hardest thing about living in a home? If we were to follow you for a week, tell us who we might see. What do you typically do in your home in a normal day? Tell us about your neighborhood and accessibility to community resources. 48 EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE Appendix B Participant 1 Photos 49 EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE Appendix C Participant 2 Photos 50 EXPERIENCES OF OLDER ADULTS WHO AGE IN PLACE Appendix D Participant 3 Photos Signature: Email: ldale@uindy.edu Signature: Email: decleenek@uindy.edu 51 Dale group_Aging in Place Final Manuscript_OTD 656 Final Audit Report Created: 2020-12-11 By: Kristin Arnes (arnesk@uindy.edu) Status: Signed Transaction ID: CBJCHBCAABAAlvl9r0Ya1Yg1_QMgqNwpatw3lzxDkjSh 2020-12-11 "Dale group_Aging in Place Final Manuscript_OTD 656" History Document created by Kristin Arnes (arnesk@uindy.edu) 2020-12-11 - 0:04:53 AM GMT- IP address: 69.174.160.116 Document emailed to Lucinda Dale (ldale@uindy.edu) for signature 2020-12-11 - 0:05:58 AM GMT Email viewed by Lucinda Dale (ldale@uindy.edu) 2020-12-11 - 12:38:58 PM GMT- IP address: 66.102.6.59 Document e-signed by Lucinda Dale (ldale@uindy.edu) Signature Date: 2020-12-11 - 12:39:58 PM GMT - Time Source: server- IP address: 75.103.169.250 Document emailed to Kate DeCleene Huber (decleenek@uindy.edu) for signature 2020-12-11 - 12:39:59 PM GMT Email viewed by Kate DeCleene Huber (decleenek@uindy.edu) 2020-12-11 - 1:04:13 PM GMT- IP address: 172.58.143.120 Document e-signed by Kate DeCleene Huber (decleenek@uindy.edu) Signature Date: 2020-12-11 - 2:14:35 PM GMT - Time Source: server- IP address: 69.108.47.154 Agreement completed. 2020-12-11 - 2:14:35 PM GMT  ...

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