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... Running head: KIDS DANCE OUTREACH: A PROGRAM EVALUATION Kids Dance Outreach: A Program Evaluation Julie Baughman May 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Jennifer Fogo, Phd, OTR 1 KIDS DANCE OUTREACH: A PROGRAM EVALUATION A Capstone Project Entitled Kids Dance Outreach: A Program Evaluation 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 Julie Baughman, OTS Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date 2 KIDS DANCE OUTREACH: A PROGRAM EVALUATION 3 Abstract Participation in group-based dance activities is thought to positively impact a childs overall health and wellness. Though researchers have investigated the effects dance has on a persons overall health and wellness, Kids Dance Outreach has not evaluated their programs to confirm these findings with the work they do. In this study, the DCE student developed evaluation tools for all stakeholders of KDO. KDO stakeholders included students, staff, parents, and school teachers. The evaluation tools were distributed, and results were analyzed. 254 students completed an 11 question pre/ post survey on two occasions. Additionally, eighteen parents and eight school teachers responded to an evaluation on the impact/effect they see KDO programs have on their children/ students. Results corresponded to those found in the literature in the areas of emotional, social, and environmental wellness. Majority of KDO stakeholders reported the program positively impacting self-confidence, teamwork, and peer relationships. The pre/ post student evaluations identified correlations between feelings and liking to dance and creativity and self- expression. Unlike findings in the literature, additional benefits found when analyzing KDO programs included the positive effects in community mobility, language, and education. The DCE student suggests further evaluation of KDO programs through utilization of updated evaluation tools further expand on findings. Overall, continuation and expansion of KDO programs were supported by all current stakeholders in the organization. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 4 Kids Dance Outreach: Program Assessment Kids Dance Outreach (KDO) is an Indiana organization developed in 2012, with the mission to help children of any race, religion, economic status, or ability achieve success through hard work, discipline, and collaboration (Kids Dance Outreach, n.d.). KDOs innovative model for dance education, inspired by the National Dance Institute, engages and motivates children to reach their fullest potential (Kids Dance Outreach, n.d.). KDO programs occur in a safe environment where live musicians and trained dance instructors educate, encourage, and inspire students to step out of their comfort zone and work together (Kids Dance Outreach, n.d.). KDO programs, designed for children in grades K-8, take place in a variety of settings. The majority of KDO students participate in the KDO in-school programs. These programs occur in Indianapolis public and charter schools where more than 70% of children are part of a minority group, and greater than 90% of children receive free or reduced lunch (Kids Dance Outreach, n.d.). The KDO in-school programs occur one time a week for one hour. For some schools KDO is provided a space within the school, as others charter their students from school to the Athenaeum to engage in KDO. All KDO school programs occur at no cost to the children and their families, decreasing the financial stressors and allowing opportunity for children to participate in meaningful activity. Additionally, KDO has two scholarship programs, SWAT Team and X Team. These programs are comprised of children who demonstrate success in the in-school programs and want to continue with KDO programs outside of school (Kids Dance Outreach, n.d.). Students who participate in these programs meet 1-2 times a week for 2-3 hours at a time to rehearse routines they will perform at KDOs Event of the Year. The Event of the Year is the opportunity KIDS DANCE OUTREACH: A PROGRAM EVALUATION 5 for kids in these programs to show off their hard work to the community. KDO SWAT and X Team meet at the Athenaeum or CFI 2 for rehearsals. KDO also designed two programs specifically for children with disabilities. The Adaptive Dance program is specialized for children with a Down syndrome diagnosis, and the IMAGINE Project provides a platform for integration, imagination, and social participation for children regardless of their disability (Kids Dance Outreach, n.d.). These programs give children with disabilities the opportunity to develop and enhance their social, emotional, and physical skills through dance (Kids Dance Outreach, n.d.). The Adaptive Dance program meets once a week on Saturdays for one hour at the Jewish Community Center. The IMAGINE Project was trialed for the first-time last fall but is currently not available for children to participate. Review of Literature Giving children the opportunity to participate in meaningful activity increases their health, wellness, and overall quality of life (Lemonia, Goulimaris, & Georgios, 2017). Wellness is a dynamic way of life, consisting of ones emotional, physical, social, intellectual, spiritual, occupational, and environmental well-being (Scaffa, Reitz, & Pizzi, 2010). When all dimensions of wellness work together there is an improvement in health and quality of life (Scaffa, Reitz, & Pizzi, 2010). Addressing childhood wellness is more important in todays society as children are exposed to various threats to their wellness including childhood obesity, bullying, and school violence (McLoughlin & Kubick Jr., 2004). These threats, as well as adverse childhood experiences (ACEs), affect 34.8 million children worldwide (Center for Youth Wellness, 2017). With an increase in threats and ACEs comes an increased risk of health, behavior, and learning problems (Center for Youth Wellness, 2017). KIDS DANCE OUTREACH: A PROGRAM EVALUATION 6 The rise in mental health disorders is another concern for the wellness of children. Approximately one in five children will experience a mental health disorder at some point in their life (NAMI, 2019). Of those children, only half will receive services to address their experiences and concerns (SAMHSA, 2015). Fifty percent of all chronic mental illness begins by age 14 (National Institute of Mental Health, 2018). With limited knowledge and resources to assist in addressing mental health concerns, suicide is now the second leading cause of death in people aged 10-34 (National Institute of Mental Health, 2018). Benefits of Kids Dance Outreach Children participating in KDO programs are improving their health and well-being as they express themselves to others through movement. Self-expression enhances self-confidence and decreases the potential for future threats (Hagensen, 2015). Engaging in KDO each week creates the opportunity to affect all seven dimensions of the childs wellness. In a single KDO session, children are exposed to social engagement, team work, sensory input, and physical movement. Research supports the benefits of a program like KDO. Individually dance, music, and team work all have a positive impact on health and well-being (Cardinal, 2014). A greater understanding of the impact dance, music, and teamwork has on a childs health and wellbeing can be explained when looking individually at the seven dimensions of wellness: emotional, physical, social, intellectual, spiritual, occupational, environmental. Emotional Wellness. Emotional wellness is a persons ability to understand who they are as well as acknowledge and cope with the feelings and challenges they experience (University of California Riverside, 2014). Emotional wellness includes the ability to share feelings of KIDS DANCE OUTREACH: A PROGRAM EVALUATION 7 happiness, joy, fear and anger. It also accounts for psychological barriers such as a persons selfesteem, body image, stress, and anxiety (Cardinal, 2014; Hagensen, 2015). Self-esteem and body image are strongly correlated (Hagensen, 2015). If a child has a negative body image, they are at greater risk of decreased self-esteem and increased risk of depression (Hagensen, 2015). Not all individuals with negative body imagine are depressed due to increased body mass (Hagensen, 2015). Often the depression is a result of increased social stress and poor attitudes related to obesity (Hagensen, 2015). Maintaining and improving ones self-esteem requires participation, success, and positive feedback during an activity (Hagensen, 2015). Dance can provide an outlet for individuals as they begin to understand their feelings and increase their sense of self (Deans, 2016). This outlet for self-expression can lead to positivity, happiness, and overall enjoyment (Duberg, Mller, & Sunvisson, 2016). Enjoyment, influenced by perceived success; mood; age; teaching methods; and gender, is identified as a major determinant of physical activity in school children (Gao, Zhang, & Podlog, 2014). Physical Wellness. Physical wellness includes a persons ability to maintain a healthy quality of life, allowing them to complete meaningful activities without extreme fatigue or physical stress (University of California Riverside, 2014). Dance is shown to have positive effects on a persons physical wellness (Biddle & Asare, 2011; Hagensen, 2015; Hanna, 1995; Martinez, Martinez, Bouzas, & Ayan, 2019; Ward, 2008). Through dance, individuals are strengthening the cardiovascular, immune, and musculoskeletal systems (Hagensen, 2015; Hanna, 1995). With children, dance can be a fun activity to increase heart rate without creating the increased stress and monotony adults may experience while in the gym. Movement based KIDS DANCE OUTREACH: A PROGRAM EVALUATION 8 activities, like dance, allow individuals to increase their heart rate and build strength while doing something fun and enjoyable (Martinez, Martinez, Bouzas, & Ayan, 2019). Social Wellness. Social wellness includes the ability to connect and relate to others, which allows for establishing and maintaining positive relationships (University of California Riverside, 2014). Group dance programs create a sense of belonging as children work together to learn, develop, and grow (Kretuzmann, Zander, & Webster, 2018; Lemonia, Goulimaris, & Georgios, 2017). Gao, Zhang, & Podlog (2014) found upper elementary school aged children enjoyed interactive dance games significantly more than traditional games with peers, as they could customize and collaborate in the process of game development (Gao, Zhang, & Podlog, 2014). Dance is a form of expression for children regardless of their ability to verbally communicate. Dance provides children a platform for social wellness as it creates a safe environment to work together with peers and express themselves through movement (Hagensen, 2015; Lemonia, Goulimaris, & Georgios, 2017). Intellectual Wellness. Intellectual wellness includes both the ability to have an open mind and desire to learn when experiencing new thoughts and ideas, as well as a willingness to try new activities as an individual, in a group, or within the community (University of California Riverside, 2014). Children relate to movement as a means for learning (Dinold & Zitomer, 2015). Movement activities such as dance contribute to enhanced imagination, creative expression, memory, and decision making (Dinold & Zitomer, 2015; Hanna, 1995). Furthermore, dance has been found to positively impact vocabulary, critical thinking, concentration, and space/time orientation (Dinold & Zitomer, 2015). Through dance, children are able to feel a sense of belonging, positively affecting their self-esteem, and opening their minds KIDS DANCE OUTREACH: A PROGRAM EVALUATION 9 to try new things (Kreutzmann, Zander, & Webster, 2018). Similarly, dance is also positively impacting the intellectual wellness of children with disabilities, as it engages them in kinesthetic learning, adapting the mind body connection (Lin, Chiang, Shih, & Li, 2018). Spiritual Wellness. Spiritual wellness includes a persons ability to create peace and harmony, thus working towards developing congruency in their values and actions (University of California Riverside, 2014). Dance and music create the opportunity for individuals to escape from the present and feel a sense of peace and relaxation (Hanna, 1995). One may also find a sense of inclusion to culture and value, resulting in a reduction of stress and a feeling of togetherness (Hanna, 1995). Dance provides a connection between individuals, regardless of race, gender, or disability, allowing individuals the opportunity to learn from one another (Masunah, 2016). Occupational Wellness. Occupational wellness includes the ability to find fulfillment in a career and maintain a work life balance (University of California Riverside, 2014). Though children do not have a career, they are learning skills and lessons through daily activities which can be carried over to a future job. The Occupational Therapy Practice Framework defines occupation as various kinds of life activities in which individuals, group, or populations engage (American Occupational Therapy Association, 2014, p. S19). Occupation includes all activities a person completes throughout the day, including but not limited to, dressing, bathing, community mobility, play, work, and education (American Occupational Therapy Association, 2014). Lin, Chiang, Shih, and Li (2018), found utilizing dance technology as an assistive device for individuals with intellectual disability helped to improve occupational skills (Lin, Chiang, Shih, & Li, 2018). Furthermore, students participating in art programs have the opportunity to KIDS DANCE OUTREACH: A PROGRAM EVALUATION 10 express themselves, gain the self-confidence, and aspire to find fulfillment in a future job. Children who admire their dance instructors and musicians may find they too want to make a career out of sharing their love of dance and music with others. Environmental Wellness. Environmental wellness includes a persons ability to accept and take responsibility for their surrounding area, whether it be in their home or community (University of California Riverside, 2014). In the case of dance, ones environmental wellness includes the emotional, physical, and social context where dance takes place (Cardinal, 2014). The dance environment has the potential to impact the dancers perceived feelings toward the class. If the dancer is not in a conducive dance environment their perceived emotional, physical, and social benefits are negatively affected (Cardinal, 2014, Gao, Zhang, & Podlog, 2014; Anand, 2018). When looking at the effects of inclusive dance, Dinold and Zitomer (2015), discuss how the environment is impacted by the physical space and all things within that space including people, music, equipment, props, costuming, etc. (Dinold & Zitomer, 2015). Similarly, a positive school environment engages children academically and creates a positive correlation to health and behavior (Anand, 2018; Kreutzmann, Zander, & Webster, 2018). Zitomer (2016) identified the benefits of dance education in the school system for those with disabilities, finding that by creating an accessible environment for children with and without disabilities to interact together, their level of joy, success, and since of belonging increased (Zitomer, 2016). Rationale Although research supports that a program like KDO has the potential to impact all aspects of a childs wellness, KDO has not had the opportunity to test and evaluate its programs. KDO would like to know what benefits the staff, students, and additional party members feel the program has on their lives. Therefore, the purpose of this study is to complete a formal KIDS DANCE OUTREACH: A PROGRAM EVALUATION 11 evaluation of the five KDO programs through needs assessments and pre/post surveys for the KDO staff, students, teachers, and parents. This information will provide KDO quantitative data to support the effectiveness of its programs and/or will provide information to improve the programs for the future. Supporting Theory and Model Theoretical framework is important to consider throughout a project as it acts as a means for organization and guidance (Bonnel & Smith, 2017). The Quality Improvement Model and Precede Proceed Model will support this project as the primary focus is to develop and administer a substantial outcomes tool that measures how well KDO is meeting their goal of improving the lives of children. In conjunction with these models, the Social Cognitive Theory supports this project by identifying how a childs experiences, peers, and environment impact their health and wellness behaviors (Bandura, 1998). The Quality Improvement Model is comprised of two phases (IHI, 2012). The first phase has three fundamental questions: What are we trying to accomplish? How will we know a change is an improvement? and What changes can we make that will result in improvement?(IHI, 2012, p.2). Based on the responses to these three questions, the project proceeds to the second phase which consists of the PLAN, DO, STUDY, ACT (IHI, 2012). During this phase, the tests or observations are planned; findings are analyzed and refined; and the data is used to incorporate change to the quality improvement plan (IHI, 2012). The Precede Proceed Model consists of eight phases (Green & Kreuter, 1999) The first phase identifies the relationship between the health problem, social condition, and the community (Green & Kreuter, 1999). KDO has the potential to affect all dimensions of wellness, at various locations in the community. Collecting vital indicators is the second phase KIDS DANCE OUTREACH: A PROGRAM EVALUATION 12 of the process (Green & Kreuter, 1999). This will occur through the needs assessments and surveys KDO staff and students will complete. Next researchers identify any influencing factors including motivation, rationale, and incentive before completing the administrative and policy assessment (Green & Kreuter, 1999). When completing the administrative and policy assessment it is important to look back at the foundation of KDO, what the policies and procedures entail, and how those things are being measured. Next, the proceed portion begins with the implementation (Green & Kreuter, 1999). In the case of KDO, this is the administration of the outcome tool. After administration, the process evaluation occurs, which includes looking at how the assessments were administered, and if changes in the data collection could have been made. Following the analysis is the impact evaluation, which occurs by looking at the impact of KDO on its clients, and comparing those findings to the literature. The final step consists of an outcome evaluation which requires a cohesive look at all the information gathered in order to identify relevant results and potential implications (Green & Kreuter, 1999). The social cognitive theory (SCT) was developed in 1986 by Albert Bandura (Bandura, 1998). SCT explains that learning occurs in a social context with interaction from the person, environment, and behavior (Bandura, 1998). SCT considers how individuals learn and maintain behavior through the context of their environment (Bandura, 1998). These behaviors are influenced by past experiences as well as current expectations (Bandura, 1998). When considering KDO, a childs behavior during a class session can impact how the child and their classmates perceive the class. If a child is having a negative behavior that leads to a disruption in the environment, it can negatively impact the other children within the environment. In turn, if the environment is not suitable for a child, their perceived enjoyment could be negatively affected and therefore their behavior may change. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 13 By utilizing these theories and models as the theoretical framework for this project, KDO has a supported evaluation to administer to their staff, students, teachers, and parents. This theoretical framework supports KDO survey development by encompassing both the wellness and behaviors of children through the SCT, and the structural flow and organization expressed in the Quality Improvement and Preceded-Proceed models. Methods/ Implementation Prior to starting the project, the DCE student completed an initial needs assessment with the KDO director and one board member. The DCE student gained information about the organization and programs KDO offers via an open and unstructured interview. Unstructured interviews allow for open communication between all parties as they have no parameters or guidelines (Burgess, 2003). They are a great tool for gaining general knowledge and building rapport (Doody & Noonan, 2013). During the initial unstructured interview, the KDO director and board member identified concerns regarding adequate space, number of staff/volunteers available, and scheduling conflicts for children when discussing their trialed program, the IMAGINE Project. Brainstorming occurred, and the decision to evaluate the impact/effect KDO has on their stakeholders became the primary focus area. The KDO director, board member, and DCE student agreed the best way to promote the greatest success moving forward was to evaluate the organization as a whole before focusing on the specific concerns identified when trialing the IMAGINE Project. With the KDO mission in mind, the DCE student began exploring the potential impact/ effect of a program like KDO. This included looking individually at the effect music, dance, and group participation have on those involved. From those findings, the DCE student developed KIDS DANCE OUTREACH: A PROGRAM EVALUATION 14 themes to initiate the development of questions for each of KDOs stakeholders. Stakeholders include KDO staff, KDO board members, KDO students in the school and scholarship programs, school staff members involved in KDO school programs, and the parents of students who participate in KDO scholarship and adaptive dance programs. Though all stakeholders completed an evaluation, the type of evaluation was individualized to each consumer group. KDO Staff Evaluation The KDO staff consists of eight dance instructors and six musicians varying in age and years of KDO experience. The only inclusion criterion was current KDO employment, therefore previous KDO staff were excluded from the project. With KDO staff traveling to various locations throughout Indianapolis, the DCE student determined an online survey as the most effective way to reach all staff members. Other benefits of an online survey include quick delivery and opportunities for customization (Sue & Ritter, 2012). The KDO director distributed the anonymous survey links via email to all KDO staff members. Email surveys are economical, quick to develop, and easy to distribute (Sue & Ritter, 2012). Along with the survey link, the email included background information on the DCE student, research purpose, survey design, and estimated time needed to complete the survey. A reminder email was sent nine days after the initial email to all staff members regardless of whether or not they had already completed the survey. Two weeks after the initial emails were sent, the survey was closed, and data analysis began. Survey Structure & Design. The staff survey investigated the impact and effect of KDO programs on the staff and students. Refer to Table A1 for the list of specific questions in this survey. The 31-question staff survey consisted of eight multiple-choice and 23 open-ended questions. Though multiple-choice questions produce concrete responses, open-ended questions KIDS DANCE OUTREACH: A PROGRAM EVALUATION 15 promote spontaneity and avoid researcher bias (Reja, Manfreda, Hlebec, & Vehovar, 2003). Due to the decreased structure in open-ended questions, more explicit wording is important (Reja, Manfreda, Hlebec, & Vehovar, 2003). The KDO director and one board member reviewed the survey questions prior to distribution, checking for precision in question development. Their feedback was incorporated prior to releasing the surveys. Designed using Qualtrics, the staff survey utilized a mixed methods approach. The mixed methods approach includes simultaneously collecting and analyzing qualitative and quantitative data (Creswell & Clark, 2017). This method creates potential for various outcomes including confirmation, expansion, or discordance (Fetters, Curry, & Creswell, 2013). Confirmation occurs when the qualitative and quantitative findings provide similar conclusions (Fetters, Curry, & Creswell, 2013). Results with confirmation have a greater credibility (Fetters, Curry, & Creswell, 2013). Expansion occurs when the findings diverge and create insight into ideas the researcher had not initially considered (Fetters, Curry, & Creswell, 2013). Results with expansion open up the potential for future studies (Fetters, Curry, & Creswell, 2013). Discordance occurs if the qualitative and quantitative findings are conflicting, inconsistent, or contradict each other (Fetters, Curry, & Creswell, 2013). If discordance occurs, the researcher should look for potential sources of bias, consider gathering additional information, or re-analyze existing data to identify explanations that are challenging validity (Fetters, Curry, & Creswell, 2013). KDO Board Member Evaluation The KDO board of directors consists of 16 individuals with various backgrounds, professions, and roles. The primary goal of the KDO board is to supervise and promote the success of the KDO organization. Keeping the mission of KDO at the forefront of all their KIDS DANCE OUTREACH: A PROGRAM EVALUATION 16 endeavors, the board of directors works together to fundraise, market, and educate the public about KDO. Initially, the DCE student attempted to evaluate KDO board members by reaching out via email to set up times to meet in person or talk over the phone. After one week of no response, the DCE student contacted the board member who participated in the initial needs assessment to discuss a better approach. The DCE student suggested developing a small questionnaire to send via email to board members as questionnaires provide a fast and effective framework for information gathering (Deutskens, De Ruyter, Wetzels, & Oosterveld, 2004). Due to staff members busy schedules and limited meeting times, the DCE student and board member agreed a questionnaire would be a more convenient and effective means to gather data. Survey Structure & Design. The questionnaire consisted of 10 open-ended questions. Questions focused on role of board members and the potential strengths and opportunities they see in KDO. Refer to Table A2 for a list of specific questions. With limited information provided to the DCE student, an open-ended questionnaire was most appropriate. Open-ended questionnaires allow the respondents to provide as much or as little information as they want to share as there are no guidelines or restrictions (Reja, Manfreda, Hlebec, & Vehovar, 2003). KDO Student Evaluation Student evaluations were administered to individuals participating in X Team, SWAT Team, and the school programs. X Team consists of 13 dancers in grades 3-8. All X Team dancers completed the student evaluation. SWAT Team consists of approximately 60 dancers in grades 1-8. The KDO director and teaching artist chose 41 SWAT Team students at random to complete the evaluation. The KDO director and teaching artist also identified which school program classes would complete the evaluation. They identified four schools: Super School at KIDS DANCE OUTREACH: A PROGRAM EVALUATION 17 IPS Fredrick Douglass 19, Carl Wilde School 79, Center for Inquiry 2, and Center for Inquiry 70. Evaluations were administered to two 2nd grade classes, five 4th grade classes, and one 5th grade class. Each class had 22-30 students varying in gender, age, ethnicity, and socioeconomic status. Children under the age of seven do not have the cognitive skills to effectively answer a survey (De Leeuw, 2011) therefore, kindergarten and first grade classes were excluded from the study. The student evaluations included a pre and post survey administered before and after a single KDO class session. The paper surveys were color coded to keep all data organized and identifiable. Children completed the surveys prior to and immediately following a KDO class on three occasions during the semester. KDO semesters run from January- May. Due to the timing of this project, no assessments were administered on the first or last week of KDO. The KDO teaching artist introduced the DCE student prior to administering the first surveys. The DCE student gave a verbal explanation of the survey, including instruction to answer all questions on how they felt at that given moment. Prior to distributing surveys, students were informed that all responses would be anonymous and there are no right or wrong answers. For all second-grade classes the pre/post surveys were read aloud. Colorado Legacy Foundation (n.d.) identified greater accuracy in responses when students in K-2 were not required to interpret and analyze survey information independently (Colorado Legacy Foundation, n.d.). Students in grades 3-5 completed pre/post surveys independently after instruction was given. Each student was assigned a number prior to administering the surveys. The number corresponded to the childs name and was used every time the DCE student administered the survey. This allowed for comparison before and after a single class as well as from one week to another. Numbers were hand-written in the bottom right corner of each survey. The DCE student kept the student roster with the identifiable numbers stored in a secured folder on the KIDS DANCE OUTREACH: A PROGRAM EVALUATION 18 computer. Unidentifiable physical copies of the pre and post surveys were stored securely in a binder. A Post-It note with the childs name was placed in the top left corner of the survey prior to distribution. This allowed for an efficient way to distribute the survey, while still keeping data anonymous to KDO staff. The Post-It notes were removed immediately following return of the survey. All surveys were returned to the DCE student. Survey Structure & Design. The pre/post surveys created for KDO students included 11 self-report questions: one visual scale, five True/False, four Agree/Disagree, and one multiple choice. Refer to Table A3 for list of specific questions. Survey layout and language was determined after completing research and reaching out via email to the non-profit organization, Girls Inc., to identify effective ways to administer surveys to children. Girls Inc. provided sample surveys for children in 3rd to 4th grade. Questions contained True/False, Agree/ Disagree, and multiple choice with less than four possible answers. When administering surveys to children language and format are critical (De Leeuw, 2011). Asking questions on topics such as feelings, subjective phenomena, and general knowledge produce the most accurate responses in children between 7-10 years of age (De Leeuw, 2011). Questions should be short with limited response options (Austin Research, 2014). Utilizing images and avoiding ambiguous language or negatively phrased statements keeps children engaged and limits confusion (Austin Research, 2014). KDO School Program Staff Evaluation Unlike the students, a structured evaluation for the school program staff is not the most appropriate way to gather data. The school program staff consists of classroom teachers, PE teachers, and resources teachers that stay in the classroom as KDO staff work with the students. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 19 Their primary role during KDO is to remain in the classroom and assist with any behavior concerns that may arise. Eight school staff members were evaluated on one occasion during the semester. The school program staff have a greater understanding of the students in the school programs. The cooperation and collaboration between the school program staff and KDO staff is critical in KDOs success. If the school program staff are not supportive of KDO and the students, the program is not effective. Survey Structure & Design. Due to the environmental factors and time constraints, a semi-structured interview was determined to be the easiest way to evaluate the school program staff. Semi-structured interviews allow for a balance between structure and freedom of expression (Brinkmann, 2014). This form of interview allows the DCE student to create a guideline for conversation, with the potential to change and engage in conversation that was not originally thought of (Brinkmann, 2014). Semi- structured interviews are a great way to build rapport and learn about your consumer (Brinkmann, 2014). The use of a semi-structured interview allows for the opportunity to quickly move through information if necessary, while also opening up the possibility to expand ideas if more time is available. The DCE student developed five structured talking points to use with each of the school program staff. These focused on the impact of KDO on the childrens behavior, mood, focus, and attention before and after a KDO session. Refer to Table A4 for the specific questions asked to staff members. Changes were made to the staff evaluation, which included results of the KDO staff and student initial evaluations. Given these results they were then asked to rank the findings of the staff and students from their perspective. This allows for an opportunity to quantify the results. See Table A5 for updated school staff evaluation. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 20 KDO Parent Evaluation Parents of children in the Adaptive Dance, SWAT Team, and X Team were evaluated through unstructured interviews. Parents in the Adaptive Dance program were asked to participate in the unstructured interview process while their children attended class. The KDO staff introduced the DCE student prior initiating the interview process. The KDO parents were given the option to terminate the conversation at any point in time if they were not comfortable or did not want to disclose information. A total of seven parents completed an unstructured interview. The adaptive dance evaluation occurred on one occasion. Parents of the SWAT and X Team were provided a structured survey consisting of eight open ended question and two questions asking parents to rank the results of the staff and student initial evaluation. See Table A6 for SWAT and Table A7 for X Team parent evaluations. All 13 X Team parents were given surveys with a response rate of 6 returned. Approximately 20 parents of SWAT were provided surveys with 7 respondents. Survey Structure & Design. Unstructured interviews were used to evaluate the Adaptive Dance parents. Unstructured interviews are less formal, flexible, and free flowing (Trueman, 2015). This method of evaluation allowed the DCE student the opportunity to introduce themselves and begin to build a rapport with the parents. Parents were also able to express themselves freely, talking as little or as much as they wanted. Through this approach of evaluation, the DCE student was able to identify what was important to the parents and gain a greater understanding of their experiences and point of view. X Team and SWAT parents do not typically stay when their child is in class. Because of this the unstructured interview was not an appropriate method. The KDO director reported the KIDS DANCE OUTREACH: A PROGRAM EVALUATION 21 best way to reach these parents would be to send information home with the children or try to catch parents at drop off and pick up. Observations In addition to the development of surveys for stakeholders the DCE student spent extensive time observing all KDO programs. Observations included analysis of the physical environment, student/ staff interaction, and flow/ organization of program. Observations took place at SUPER School, CFI 70, CFI 2, and the Athenaeum. The DCE student would complete observations sitting at the front of the room next to the musicians. No interaction between the staff, students, and DCE student occurred during observations. Notes were taken of findings and results were shared with KDO staff. Synopsis Though the screening and evaluation process for all KDO stakeholders varied, the overall purpose remained the same. With multiple approaches to data collection, KDO results are more robust and compelling (Davis, Golicic, & Boerstler, 2011). This multi-faceted approach will provide KDO quantitative and qualitative results from various KDO stakeholders. Utilizing the results of each evaluation, the DCE student can then quantify the impact and effect of KDO programs. This information can then be shared with stakeholders and payor sources as a means to support the impact/effect of KDO on those involved. The more justification KDO can offer stakeholders and payor sources, the more opportunities they will have to expand their programs. Compare and Contrast KDO is a community-based practice setting located in the central Indianapolis area. Community-based practice encompasses a broad range of health-related services that occur in the community setting (Scaffa & Reitz, 2013). These services can include health KIDS DANCE OUTREACH: A PROGRAM EVALUATION 22 prevention/promotion, acute/chronic medical care, habilitation/rehabilitation, and direct/indirect service provision (Scaffa & Reitz, 2013). In the case of KDO, health prevention/promotion is the primary focus. Though community-based practice is a non-traditional practice area in occupational therapy today, it has been part of the profession since the early 1900s (Scaffa & Reitz, 2013). Developed by Slagle and Barton, community-based practice initially presented with obstacles including practical constraints, historical factors, and gaps in knowledge (Scaffa & Reitz, 2013). Today the scope of community-based practice has expanded, allowing for increased opportunity in this setting (Scaffa & Reitz, 2013). A goal of community-based practice is to create a cohesive relationship between the client, practitioner, and community (Scaffa & Reitz, 2013). Stakeholders of KDO represent a diverse population of individuals. Utilizing dancers, musicians, therapists, and doctors, KDO has the potential to impact the lives of many children. For occupational therapy to be successful in this setting, the therapist must understand the knowledge and skill of their team and stakeholders (Scaffa & Reitz, 2013). Since the KDO team is diverse, and they reach out to individuals of varying age, race, background, and socio-economic status, it is important that an occupational therapist in this setting is able to adjust and adapt quickly. When all stakeholders come together as one to creatively and cost effectively achieve the organizations goals, the community-based practice setting succeeds (Scaffa & Reitz, 2013). Unlike a traditional setting, the team approach in community-based settings is critical as membership is chosen rather than assigned (Scaffa & Reitz, 2013). Traditional practice settings include hospitals, outpatient clinics, schools, and home health programs (Jones, n.d.). Though KIDS DANCE OUTREACH: A PROGRAM EVALUATION 23 one way KDO is offered is through the school system, they do not utilize a traditional approach to occupational therapy. Occupational therapists (OTs) in the school system are required to address occupations specific to fulfilling the childs role as a student (American Occupational Therapy Association, 2010). School OTs can address components including but not limited to social skills, math, reading, writing, behavior management, recess, participation in sports, self-help skills, and prevocational/vocational participation (American Occupational Therapy Association, 2010). Though KDO students are given the opportunity to engage socially with peers, and research supports dance programs improve intellectual health and wellbeing, the primary focus of KDO is not for the child to be successful in their role as a student. OTs in the school system are also required to work only with children who are diagnosed with a disability and have qualified for an IEP (American Occupational Therapy Association, 2010). In a non-traditional community-based setting, like KDO, all children are able to participate regardless of disability or diagnosis. Though KDO offers programs specific to children with disabilities, it is not a requirement to have a diagnosis to participate. In conjunction with their adaptive dance program for children with down syndrome, KDO also offers the opportunity to integrate children with and without disabilities into the same environment through their school programs and IMAGINE Project. In the school system, children receiving traditional occupational therapy services can work one on one or in a small group with the therapist (American Occupational Therapy Association, 2010). In the non-traditional KDO environment, the childrens needs are met in a large group rather than a one on one basis. The traditional school environment may be more intimate and allow for an individualized approach, but the non-traditional environment provides KIDS DANCE OUTREACH: A PROGRAM EVALUATION 24 the opportunity to work on skills the child may not even realize are being addressed. These skills include but are not limited to gross motor development, coordination, confidence, and social participation. As some children may need a one on one traditional approach, others may achieve greater success when addressing their need in a non-traditional setting. Overall, occupational therapy practice is based on the idea that participating in meaningful occupations can improve ones overall health and well-being (Scaffa & Reitz, 2013). Regardless of the setting in which meaningful occupation takes place, it is the OTs role to provide client centered care as they evaluate, assess, and intervene. Regardless of the setting, the OT process remains the same. It is the small details such as environmental factors and funding sources that impact the change in how service is provided. Leadership Leadership is defined as a process of creating structural change wherein the values, vision, and ethics of individuals are integrated into the culture of a community as a means of achieving sustainable change (Braveman, 2016, p. 4). At the organizational level, leadership revolves around the established mission and goals (Stogdill, 1950). Leadership encompasses not only leaders themselves, but all individuals being represented by the organization (Braveman, 2016). A good leader has the potential to positively affect all stakeholders of an organization, as they act as experts in their area of study (Braveman, 2016). As an occupational therapist in a non-traditional setting, the potential for leadership is limitless. Occupational therapists provide an alternative perspective, leading to opportunities in innovation, program development, and rapport building with stakeholders outside the medical field (Braveman, 2016). Through this DCE experience, occupational therapy students have the opportunity to explore their leadership capabilities. To fully understand their capabilities, they KIDS DANCE OUTREACH: A PROGRAM EVALUATION 25 must first identify their strengths and weaknesses. Once strengths and weaknesses are identified, a leadership style/theory is identified. The leadership style/theories I utilized during this experience were the transformational leadership theory and the situational leadership theory. The transformational leadership theory focuses on a leader who achieves success by educating stakeholders on the value as it relates to the overall outcome (Braveman, 2016). Leaders utilizing this theory are typically charismatic, considerate, and effective (Braveman, 2016). Throughout my DCE, I have had to utilize a transformational leadership approach when communicating with KDO staff and students. When advocating for my role and the OT profession, I had to consider the KDO mission, as well as all of the components required for the program, to remain successful. Part of utilizing the transformational leadership theory required that I take initiative to get things accomplished. Because KDO does not have a home base/office, and the staff are in various locations around Indianapolis, I initially experienced difficulty remaining proficient as I would be waiting for extensive periods of time to get a response to questions. As a result, I have learned it is best to communicate with KDO staff in person rather than through email or phone. This has increased communication between all parties, improving proficiency as a whole. Situational leadership focuses on a leader who adapts his/ her approach based on the developmental level of their stakeholders (Braveman, 2016). This was important during the distribution of surveys to stakeholders. When evaluating the 2nd grade classes, I had to read each question individually and define terms. This required increased time for survey administration. Another situation that impacted the distribution of surveys was the need for translation. Working in the IPS school system, many of the KDO students and parents do not speak English. To utilize situational leadership when administering surveys to students, I would ask other students in the KIDS DANCE OUTREACH: A PROGRAM EVALUATION 26 class or KDO teachers to help translate questions. In situations when no one was available to translate, the language barriers ultimately deterred the opportunity for evaluation. Staff Development Staff development was initiated each time I educated staff and students about my DCE and the role of OT. Staff members saw the surveys on multiple occasions. They were present in the room during distribution of the evaluations and demonstrated an understanding of the need for the evaluation on the second administration of surveys to school programs. KDO staff assisted with administration on the second evaluation. Additionally, I met with the directors on one occasion to educate them on the findings from the first round of evaluations. This provided an opportunity to show them the results as well as discuss the potential next steps. Though I did not educate them on how to complete data analysis, the directors were able to appreciate the results of the first round of survey distribution and identified the need for program evaluation. During observation of the KDO programs, I utilized the OT perspective to help initiate growth for KDO. This was done through the development of handouts given to the staff. The handouts included information on developmental milestones. Education was included with the handouts. Education included identifying the purpose and need for information on the handouts, as well as a description of potential opportunities of use. Staff members were appreciative of the information provided. A detailed PowerPoint presentation was given one week after completion of the DCE. All staff members were invited. This presentation provided an opportunity to integrate all components of the DCE together. This was a critical step in staff development as it was the first time the staff will have a visual representation of the results. With multiple components included KIDS DANCE OUTREACH: A PROGRAM EVALUATION 27 in the DCE, and little opportunity to share findings, the need for OT has not been portrayed to its fullest potential. Creating a situation that allows all staff to listen and learn about the findings, without time constraints or classes to attend to, gave me an opportunity to ensure staff development has occurred. Developing and implementing tools with the help and guidance of KDO staff helped to ensure carryover with staff development. Staff learned about the importance of evaluating programs. They gained knowledge about OT and its role in their community. Staff were provided with education on behavior and developmental milestones, improving their ability to reach their students. By providing staff resources on developmentally appropriate movements, the students will no longer be challenged to complete movements they are not capable of. This will result in increased engagement and less discouragement. The KDO staff have tremendous knowledge of their craft. By providing them the OT perspective, they are able to enhance their craft and grow as educators. Discontinuation & Outcomes Societal Need Providing meaningful activity to children of minority and low socio-economic status was the societal need addressed during my DCE. When a child is given the opportunity to participate in meaningful activity, it results in a positive outcome (Murphy & Carbone, 2008). Today children are being limited in their participation of meaningful activities due to barriers such as functional limitations, costs, and decreased resources (Murphy & Carbone, 2008). KDO provides children the opportunity to participate in joyful dance programs that inspire excellence, instill confidence, encourage teamwork, and applaud persistence (Kids Dance Outreach, n.d.), free of charge. KDO is meeting a societal need for children, allowing them to KIDS DANCE OUTREACH: A PROGRAM EVALUATION 28 participate in community-based activities that increase their opportunity for physical activity, social participation, play, and sensory integration all while doing an activity that is fun and meaningful. This in turn positively impacts their confidence, self-identity, self-worth, psychological state, and overall health and well-being. Mental health is a rising concern in society (NAMI, 2019). The activities that people complete during the course of a day positively or negatively impact their overall health and wellbeing (Lemonia, Goulimaris, & Georgios, 2017). Dance provides individuals with an opportunity to express themselves, while also positively impacting their physical health and wellness (Dow, 2010). Through the completion of physical activity, people report increased self-esteem and decreased depression and anxiety (Biddle & Asare, 2011). When dance occurs in a social and educational setting, similar to KDO in school programs, extraordinary benefits such as understanding content (intellectual wellness) and improving behavior (emotional wellness) have been found (Skoning, 2008). As an OT student addressing this societal need, the concern for occupational justice was at the forefront of each decision I made. Occupational justice is a justice that recognizes occupational rights to inclusive participation in everyday occupations for all persons in society, regardless of age, ability, gender, social class, or other differences (Nilsson & Townsend, 2010, p. 58). Although KDO provides inclusive participation to children, it is important that the programs offered remain meaningful to all involved. Through evaluation of the all KDO programs from the perspective of all stakeholders, KDO now has a platform for advocacy and improvement. All KDO staff continue to participate in the program because they see the benefit the programs have on the children. Continuing to give children an opportunity to complete KIDS DANCE OUTREACH: A PROGRAM EVALUATION 29 meaningful activities in society is going to keep them out of trouble and inspire them to do great things in the future. Data Analysis The IBM SPSS Statistics for Windows, Version 23.0 (IBM Corp, Armonk, NY) was utilized to analyze pre/post surveys from students. The nonparametric Friedman and Wilcoxon tests were run to determine if there was a significant difference between the students pre and post test responses. The Spearman rank-order correlations were completed to examine the relationships between numerous variables gathered from KDO students, includingthe relationship between how students felt and whether or not they like to dance, students confidence and willingness to try new things, and students willingness to share feeling with classmates and staff and feel as though they were part of the same team. Additionally, the qualitative data gathered from KDO staff, parents, and school program staff was analyzed using inductive analysis. Themes were then established. Results KDO Staff. Of the 14 KDO staff members, 75.57% (n = 11) fully completed the electronic survey. Responses included six musicians, three teaching assistants, two teaching artists, one director, and two administrators. Additionally, two teaching artists partially completed the survey and their completed components were included in the results. KDO staff were asked to indicate their level of satisfaction when first starting to work for the organization (initial) and their level of satisfaction now (current). Overall, all KDO staff reported being satisfied working for KDO on both occasions. As a whole, their current level of satisfaction was 23.08% (n = 3) higher than their initial level of satisfaction. Initially, 61.54% (n KIDS DANCE OUTREACH: A PROGRAM EVALUATION 30 = 8) reported being extremely satisfied. Currently 84.62% (n = 11) of KDO staff reported extreme satisfaction in their contributions to the organization. Additionally, KDO staff were asked to identify whether or not they feel their level of satisfaction changes dependent on the KDO program they are working with. When considering the level of satisfaction KDO staff have when working in the various KDO programs, 46.15% reported no difference in their level of satisfaction regardless of the program they are working in. Those who did report experiencing a difference in their level of satisfaction (30.16%), stated that difference was directly related to the behavior of the students in that specific program. Overall, staff felt the greatest satisfaction when working with students who cooperate, behave, and apply themselves. Satisfaction was negatively affected when students were uninterested or disruptive. KDO staff identified the impact and effect each KDO program has on the students who participate. Staff reported students in the school program are gaining confidence, dance education, respect for others, teamwork, and body awareness by participating in the KDO program. Additionally, staff reported students who participate in the scholarship programs (X Team and SWAT) also demonstrate increased self-confidence and learn how to work as a team. KDO staff reported children in the scholarship programs, unlike those in the school program, are being challenged at a higher level, they build peer relationships outside of their school, and they are expected to be leaders among their peers. Staff reported students in the adaptive dance program demonstrate increased confidence, body awareness, listening skills, and increased awareness of self and others through participation in KDO. The impact and effect of the KDO programs is greatly affected by the environment. KDO staff reported the environment is critical in their success. When school staff are unsupportive or discipline becomes a problem the effectiveness of KDO is compromised. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 31 Additionally, KDO staff reported space is a primary concern for growth of their programs. They currently do not have their own space, requiring that they rely on other locations to fulfill their need. During this experience, the DCE student has observed locations cancelling at the last minute, doors sticking and locking KDO students and staff in the room, and inadequate physical environments causing a safety risk to students. KDO Board Member. Online questionnaires were sent to all 13 board members. After not receiving any responses, the DCE student met with one board member in person and used the questionnaire as an interview guide for discussion. The information gained from the board member was not formally analyzed but used by the DCE student to gain a greater understanding of the organization. Additionally, the DCE student gained further information about the grants, funding, and payor sources when emailing the development coordinator following the meeting with the KDO board member. KDO Scholarship Students. All KDO scholarship students involved in X Team (n = 10) and SWAT (n = 41) in class on the day of evaluation completed the pre/ post survey. Using an age appropriate measure for students to indicate how they felt before and after a single KDO session, 100% of X Team students reported feeling Great (n = 6) or Good (n = 4) prior to class. Following class only 90% indicated feeling Great (n =1) or Good (n=8). In addition to indicating how they felt, X Team students were asked to identify their current energy level before and after a single KDO session. Prior to class 100% of X Team students reported their energy level as Just Right. Following class their energy levels decreased to only 20% feeling Just Right and 60% feeling Low. X Team students work at a high level of intensity and KDO staff expect the X-team students to work hard through the whole session. Through observations the DCE student KIDS DANCE OUTREACH: A PROGRAM EVALUATION 32 identified these dancers to have the greatest physical and mental pressure. Not only do the staff members expect them to be on point at all times (giving 100% commitment and energy to the dance), the students have the same expectations for themselves. After an hour of intense training it is expected to see decrease in overall feelings and energy level. The decrease in how the students felt following a single KDO session could be due to increased exhaustion and decreased energy. In addition to their feelings and energy levels KDO X Team students were asked about confidence, strength, creativity, trusting staff/ classmates, self-expression, teamwork, and trying new things. All X Team students reported a willingness to try new things, liking to dance, and being able to share their feelings through dance and with each other in their pre class evaluation. Following class, all but one student continued to report the same feelings. This student reported a decrease in all areas excluding a willingness to try new things. SWAT team is the middle tier of KDO. These students are held to high expectations in regard to showing up and giving it their best effort. Unlike the X Team, SWAT students are not given as intense choreography and are not expected to be the leaders of the organization. SWAT students completed the same pre/ post survey administered to X Team students. Approximately 98% of SWAT students reported feeling Good (n = 19) or Great (n = 20) prior to starting KDO. Following a single KDO session more students reported feeling Great (n = 36) than Good (n = 3). Therefore, it can be assumed that they felt better after participating in KDO. Similar to X Team, these students reported liking to dance (97.56%), feeling confident (92.68%), feeling strong (95.1%), and feeling creative (90.2%) when they participate in KDO. Unlike the students in X Team, in which 100% indicated they felt they could express themselves through dance and were comfortable sharing feelings with classmates/ staff, only 82.5% of KIDS DANCE OUTREACH: A PROGRAM EVALUATION 33 SWAT students reported feeling as though they could express themselves through dance and a smaller 77.5% reported feeling comfortable sharing feelings with classmates/ staff. The increase in emotion and decrease in expression is observed during the SWAT sessions. These students spend less time with the KDO staff in comparison to the time spent by X Team students. SWAT also encompasses a larger group of students, which decreases the time for students to build a strong rapport with the staff and each other. SWAT students meet one time a week to rehearse, and though the students in SWAT may know some of the KDO staff and students from their school programs, they have a smaller opportunity to fully engage with all other staff and students in the program. KDO School Program Students. KDO reaches its largest population of students in the school programs. A total of 204 students in the KDO school programs completed a pre/post survey on two occasions. The pre/post surveys administered to KDO school program students were the same as those administered to the scholarship program students. Data were analyzed as a whole as well as by school, grade, and whether or not the class travels or receives KDO in the school. When looking at the responses for all students regardless of school, grade, or whether or not they travel to receive KDO there was no significant difference between the pre and post survey for any question. When analyzing the data individually by class, grade, and whether or not the student travels to the Athenaeum to participate in KDO there was a significance found in the first question which asked students to rate I am feeling by circling the smiley face the represented their feelings in that particular moment. All students excluding those in 5th grade, at School 1, or at School 2 reported a significant difference in how they felt following participation in KDO when the survey was administered the first time. This means the first question had a KIDS DANCE OUTREACH: A PROGRAM EVALUATION 34 greater impact the first time the students were asked to complete the pre/post survey. However, it remains unknown as to why the students reported a difference in how they felt after participating in the session the first time but not the second time. Additionally, multiple correlations between the pre/post survey questions were made. The most significant correlations were found when comparing grade and whether or not the students travel to participate in KDO. Students in higher grades (4th- 5th) reported feeling better and being more confident. The students in lower grades (2nd- 4th) reported being more willing to try new things in front of their classmates. Overall, those who travel to the Athenaeum for KDO reported more positive benefits in comparison to those who experience KDO in their school. These benefits were identified by students reporting liking to dance more, feeling more confident, feeling stronger, feeling as they are part of the same team, and being more willing to try new things. See Table A8-A10 for a breakdown of additional significant correlations found when comparing questions between all students, those in specific grades, and those who travel for KDO. On average students participating in the KDO school program reported an increase in feelings following a single KDO session. When combing the two sets of data for the pre and post tests completed by all students, 72% (n = 256) reported feeling Great (n = 172) or Good (n = 84) prior to completing KDO. Following KDO their feelings increased to 75% with 196 students reporting feeling Great and 71 students feeling Good. A 7% increase was found for students reporting liking to dance following KDO. Correlations between reported feelings and liking to dance, confidence and willingness to try new things, and teamwork and sharing feelings with classmates and staff were also run. A moderate negative correlation was found between students feelings and liking to dance. Those KIDS DANCE OUTREACH: A PROGRAM EVALUATION 35 students who reported liking to dance, ultimately reported feeling better before and after completing KDO. No significant relationship was found between confidence and trying new things in front of classmates. Approximately 77% of students reported feeling confident and only 55.55% reported not being nervous to try new things in front of classmates. Additionally, there was a strong correlation between being a part of a team and being able to share feelings with classmates and staff. It can be assumed therefore that one of the benefits of participating in KDO programs is that students become more comfortable and develop a support network from being a part of a team sharing the same experience with others. KDO School Program Staff. Eight school program staff members completed semistructured interviews at various points in the semester. Each evaluation lasted approximately 15 minutes and took place while the students were participating in the KDO program. The evaluated staff members consisted of three physical education (PE) teachers, one activity-based learning (ABL) coach, one 2nd grade teacher, two 4th grade teachers, and one 5th grade teacher. The PE teachers, ABL coach, and one 4th grade teacher were evaluated in their schools as their students participated in KDO. A second-grade teacher, fourth-grade teacher, and fifth-grade teacher were evaluated at the Athenaeum where they commute with their students to participate in the KDO programs. 63% (n = 5) of school staff members had only been affiliated with KDO for one year or less. Teachers self-reported KDO impacting their students dance skills (62.5%), rhythm/ coordination (50%), confidence (37.5%), behavior (25%), and teamwork (25%). Additionally, 62.5% (n = 5) of school staff felt KDO provides an opportunity for their students to step out of their comfort zone and try something new they would have otherwise never been able to do. Due to the poverty of the children in the IPS schools, all teachers who commute with their KIDS DANCE OUTREACH: A PROGRAM EVALUATION 36 students reported the transition to a different environment allows the children to experience things outside of their school and neighborhood. One teacher reported she uses the commute as an opportunity to educate her students about the city of Indianapolis and the buildings/ landmarks they pass along the way. Additionally, teachers who commute reported the travel allows their students to have a transition period, and they ultimately notice an increase in focus and concentration when returning back to school. The majority of teachers evaluated in the schools who do not commute do not see the students following KDO, so they were unable to justify the effect KDO has on focus and concentration. The one teacher who does stay with her students following KDO reported her students tend to be more energetic and have difficulty transitioning back to classwork. All school program staff were provided the results of the KDO staff evaluations. They were asked to rate the five common themes (Dance Education, Teamwork, Respect for Others, Confidence, Body Awareness) identified by KDO staff from 1(Most)-5 (Least) impactful/effective for their class. Fifty percent (n = 4) reported the KDO programs had the greatest impact on their students confidence and ability to work as a team. Dance education was viewed as most/ more impactful/effective by the PE teachers, and the majority (75%) felt respect for others fell in the middle with a rating of two or three. Additionally, this DCE student provided each school program staff with the results of the pre/post survey from students of their class. After the teachers received the results, they were asked to rate on a scale from 0% (No Impact) to 100% (Total Impact) what percentage they felt KDO impacts/effects their students in the following areas: confidence, strength, creativity, trusting staff/ classmates, self-expression, teamwork, and trying new things. The teachers reported seeing the largest impact for their students in the following areas: trusting KDO staff KIDS DANCE OUTREACH: A PROGRAM EVALUATION 37 (92.78%), trying new things (92.78%), and teamwork (91.11%). Benefits to students physical strength (72.22%) and creativity (85%) were viewed as being less impacted. However, the rating was still fairly high, indicating that the teachers believed that participation in the KDO school program impacted their students in many significant ways KDO Parents. SWAT and X Team parents completed similar surveys to that of the school program staff. The Adaptive Dance parents completed an unstructured group evaluation. Six of twenty SWAT parents completed and returned their evaluation. Five of thirteen X Team parents completed and returned their evaluation. Seven adaptive dance parents participated in the unstructured evaluation. All SWAT parents reported hearing about KDO through their childs school or friend, and have been participating for one year or less. Sixty-seven percent of SWAT parents reported their children participate in this dance program because it is free. They also indicated that they believe their childs participation in KDO impacts their childs confidence (83.33%), physical health (33.33%), peer interaction (16.67%), and desire for commitment (33.33%). Like that of the school program staff, SWAT parents were asked to rate the five common themes identified by KDO staff (Teamwork, Challenge, Peer Relationships, Creativity, and Self Confidence) from 1(Most)-5 (Least) impactful/effective for their child. The majority (60%) of SWAT parents reported the challenge KDO brings to their students to have largest impact. Teamwork and creativity were rated as more impactful than peer relationships and self-confidence, but ultimately all five themes were shown to have an effect on the students who participate. SWAT parents were also provided a description of the pre/post surveys given to their children. They too were asked to rate on a scale from 0% (No Impact) to 100% (Total Impact) what percentage they felt KDO impacts/effects their child in the following areas: confidence, strength, creativity, KIDS DANCE OUTREACH: A PROGRAM EVALUATION 38 trusting staff/ classmates, self-expression, teamwork, and trying new things. Trusting KDO staff (100%), self-expression (98.33%), trying new things (96.67%), and confidence (96.67%) were reported to have the largest impact/ effect. Strength (80%) had the smallest impact/effect. All KDO X Team parents learned about KDO through the childs school. Unlike the SWAT team, a majority (80%) of X Team parents have been affiliated with KDO for more than two years. In addition to confidence and peer interaction, X Team parents reported this program has increased their childs passion for dance (50%) and provided a platform with strong role models to positively influence their children (40%). Majority (80%) reported the teamwork and peer relationships their children gain from participation in X Team to have the greatest impact. When asked to rate on a scale from 0% (No Impact) to 100% (Total Impact) what percentage they felt KDO impacts/effects their child in the following areas: confidence, strength, creativity, trusting staff/ classmates, self-expression, teamwork, and trying new things all X Team parents reported confidence being 100% effected. Additionally, trusting KDO staff/ classmates (96%), teamwork (90%), and trying new things (90%) were reported as greatly affected. Like SWAT team parents, parents of children in X Team also reported KDO positively impacting all areas being assessed. Adaptive dance parents completed a general discussion with this DCE student on the following topics: reasons for participation in KDO, changes observed in childs overall wellness, and the KDO staffs understanding of their children. 100% of parents in the adaptive dance program report continuing to bring their child to KDO because of the passion, expectations, patience, and love the KDO directors and teachers have for their children. They reported the directors have an innate understanding of their children and want them to succeed. In addition, the parents reported liking that the adaptive dance program is exclusive to children with Down KIDS DANCE OUTREACH: A PROGRAM EVALUATION 39 syndrome. Parents were asked to identify the impact KDO has on their childs social, physical, emotional, and intellectual wellness. In regard to social wellness, parents reported KDO instills the confidence in their children to be able to push themselves to try new things. They love the group atmosphere and the support and encouragement the children provide to each other. The childrens physical wellness is impacted in areas of coordination, balance, core strength, and body awareness. In regard to emotional wellness one parent reported, my child can come to KDO in a horrible mood and once they see Michael and Monica they are laughing, joking, and smiling again. One of the greatest strengths identified by parents of the adaptive dance is the effect the program has on their childrens intellectual wellness. During a single session the children are attending to tasks for an hour, following directions, counting, keeping a rhythm, and expected to follow a routine/ structure. One parent reported It is because of the KDO staff this program is so successful. They are so great at getting the children engaged and keeping them engaged. Quality Improvement Evaluations and adjustments to the developed tools occurred during each phase of the DCE to ensure continuous quality improvement. During the initial evaluation the DCE student was educated on the KDO programs and stakeholders. The DCE student later met with a board member and development coordinator to further expand understanding of the program, ensuring the success of evaluation tool development. Through observations, conversations, and literature reviews the DCE student developed the initial evaluation tools for all KDO stakeholders. Adjustments were made following review from the KDO director and board member. During the implementation phase, the DCE student identified two barriers impacting the time required to distribute surveys to the students in the school programs. When distributing KIDS DANCE OUTREACH: A PROGRAM EVALUATION 40 evaluations to the first second grade class, their school teacher reported the need to read all questions aloud to the students. The teacher also asked the DCE student to define all terms within the evaluation tool (i.e. strength, confidence, creative). This required increased time for survey completion, ultimately impacting the number of second grade classes evaluated. Additionally, language barriers were also something the DCE student had not considered going into this phase. Some students required classmates or KDO staff to translate all content on the evaluation tool, increasing the amount of time needed to complete the evaluation tools. After the initial evaluations were administered and analyzed, the DCE student found discrepancies in what students were reporting and what was being observed. The data also did not support significance between the pre/post surveys suggesting the questions may not have been asked in the most effective way. The DCE student went re-examined the wording specifically looking at sentence structure and content. Adaptations to the evaluation were brainstormed and ideas were presented to KDO staff at the board meeting. The proposed adaptations included simplifying and rewording questions to be specific to KDO. The DCE student determined many questions were not written to measure improvement from pre to post evaluation. It was therefore proposed to administer the evaluation tools on one occasion at the beginning and end of semester was discussed with board members. Due to the timing of the DCE the DCE student was unable to modify the assessment tool for students prior to completing the project. Board members were made aware of potential changes and given electronic copies of the current assessment tools. Additionally, school staff and parent evaluations were modified to specifically address topics included on the student and KDO staff surveys. This modification allowed the DCE student to compare the effectiveness of KDO across all stakeholders. Because the DCE student KIDS DANCE OUTREACH: A PROGRAM EVALUATION 41 was able to gain generalized information from the KDO staff and board, specialized questioning was appropriate for the staff and parents. See Table A5-A7 for specific changes. The modified evaluation tool for staff and parents was administered instead of the initial planned evaluation. The modified student evaluation tool was not administered to students. The DCE student and KDO staff determined that evaluating the students on two occasions using the initial evaluation would help to confirm the need for question modification. The KDO director was provided a digital copy of both versions at dissemination of the DCE. Sustainability Sustainability of evaluation tools and their results is feasible as KDO staff have electronic copies of all tools, and have observed the distribution process, ensuring understanding for potential re-evaluation. The tools were developed, distributed, analyzed, and re-examined by the DCE student prior to dissemination of the DCE. The KDO director was included in each step of the process. After distribution and analysis, changes to question structure and survey layout were further discussed with the KDO director. The KDO director verbalized understanding of the development and distribution process. Since my project is not a program that will be implemented in the future, but rather a method of gaining knowledge on the programs that currently exist, sustainability looks a little different. My hopes in completing this DCE included providing KDO with tools they can use to re-evaluate programs in the future, as well as providing KDO data that supports their current programming and in turn helping to further develop and expand the current KDO programs. Dissemination The DCE student disseminated the results the DCE via a PowerPoint presentation of all findings to KDO staff and board members. The meeting took place one week after the DCE was KIDS DANCE OUTREACH: A PROGRAM EVALUATION 42 completed. The DCE student has identified five key findings from the evaluations of all KDO stakeholders. A handout was created as a means to distribute findings to potential payor sources. Additionally, a digital copy of all evaluations and tools will be provided to the KDO director. Overall Learning This DCE provided multiple opportunities to increase skills in communication, research, advocacy, and leadership. I have broadened my knowledge and experience in the pediatric nontraditional community-based setting, specifically as it relates to mental health and well-being. I have increased my understanding and appreciation for working with individuals of varying ages, races, religions, and socioeconomic status. I have increased my exposure to the effects of dance and music on mental health and well-being. Ultimately this experience has enhanced my interpersonal skills, preparing me to become a better OT practitioner in the future. Effective Interactions Throughout my DCE, my ability to effectively interact with KDO stakeholders was greatly improved. Initially, the interaction with my site mentor and KDO director was very difficult. All communication occurred via email because KDO does not have a home base/office, my site mentor is only affiliated with KDO as a board member, and KDO was not in session the first week of my DCE. It was difficult during this phase because there was no clear understanding of everyones role in the DCE. Though we had met previously and determined what I would be doing, until I was able to really see and understand what KDO was, it was hard to move forward. As the weeks progressed, I was able to identify an effective means of communication with my site mentor and the KDO director. During this time, interaction increased and I became more comfortable around all KDO staff. I gained a better understanding of the program and was KIDS DANCE OUTREACH: A PROGRAM EVALUATION 43 able to confidently ask questions and verbally communicate with staff. I did not interact with anyone other than KDO staff until student surveys were developed and ready to administer. During this time, I was able to introduce myself to the students and school staff. I discussed my role as an OT student as well as my role with KDO. Communication with the children remained focused on the surveys throughout the DCE experience. Due to the nature of KDO classes, I did not have opportunities to socialize or get to know the children. I was able to gain some information about them through observation as well as through discussion with KDO and school staff members. Communication with school staff was all interactive. I discussed my observations as well as observed their interactions with children. Some school staff members were very engaged in the KDO programs, sometimes even getting up and dancing with the children. Other staff members were less engaged and would grade papers or be on their phones during the hour class session, only engaging when there were behavior concerns. I felt most comfortable talking with the staff members who were engaged in the KDO program and their kids success. It was difficult to build rapport with staff members who did not participate because they would only respond briefly to questions, or not interact at all. Like the school staff, the KDO parents had similar responses to communication. Some parents were very open to discussing their experiences with me, while others were less interested or unwilling. The parents that completed the unstructured interview were much easier to talk with, as they kept the conversation flowing and were invested in the conversation. Those parents were also part of the Adaptive Dance Program which requires they stay in case of an emergency. Parents of children in SWAT and X Team would typically just drop off and pick up their children. To reach these parents I had to quickly educate them on who I was and my role with KIDS DANCE OUTREACH: A PROGRAM EVALUATION 44 KDO. Some were willing to listen while others had plans and needed to leave. It was difficult to build rapport with these parents, as the environment and time constraints limited their willingness to participate in the surveys. All in all, I feel my ability to communicate with the diverse population of KDO stakeholders improved over time. Though the layout and structure of KDO made it difficult to openly communicate with all stakeholders at times, by the end of the experience I was able to improve communication with staff, parents, and students. Leadership & Advocacy Through the DCE process, I developed and improved my leadership and advocacy skills. As previously mentioned, this DCE experience allowed me to grow as a leader by requiring me to take initiative in the development and implementation of tools for program evaluation. I now have increased confidence in my ability to research and report findings. I have gained skills in taking control of a situation and working independently to solve problems. I also learned to delegate and ask for help when necessary. Prior to this DCE experience, I would have led by my actions rather than my words. Having to step out of my comfort zone and become a vocal leader opened up more opportunities, one of which was the chance to advocate for myself and occupational therapy. I advocated for the OT profession initially by defining the role of OT to KDO stakeholders. I educated them on the purpose of OT and my role as an OT student working with KDO. Over time my advocacy skills improved as I became more comfortable around the KDO staff. The more I was able to advocate, the more detailed my elevator speech became. It was important that the KDO staff understood the importance of OT. In order for the tools I developed to be successful over time, the KDO staff had to see the benefit of taking the time out KIDS DANCE OUTREACH: A PROGRAM EVALUATION 45 of their program to evaluate and utilize these tools. Initially this was difficult, but the more I was able to advocate for my role the more they were willing to listen to my findings. Along with advocating for the OT profession, I also had to advocate for the tools that I created. A lot of time was spent researching the best way to evaluate children, parents, and staff. I revised the evaluations multiple times, receiving feedback with each step. During this phase I had to advocate for the rationale behind the questions. My site mentor challenged question structure at times, requiring I provide the evidence to support each questions content and structure. If I had not advocated for the tools I was creating, they may not have provided the results KDO was hoping for. Another component I found myself advocating for was the KDO organization itself. For me to successfully develop the tools KDO needed, it was important that I believed in the organization and programs offered. I spent a lot of time initially looking at their website and social media as a way to connect with the organization. Anytime family or friends would ask about my life or school, I would be sure to educate them on KDO and its benefits to society. I found myself sharing important events KDO would post about with my family and friends as a means to get the KDO name into a larger community. Not only was it important that I believed in the organization, but it was also important that the organization believed in me. Summary This DCE experience provided a platform for me to step out of my comfort zone and accomplish things I had never anticipated. I have gained knowledge in research, development of evaluation tools, leadership, and advocacy. Of all the things I gained from this experience, confidence in myself is something I hope to carry with me as I move forward. This experience taught me that everything will not always go as planned, but as long as I believe in myself and KIDS DANCE OUTREACH: A PROGRAM EVALUATION 46 believe in the organization I am working for everything will work out. It is important that I am confident in myself, otherwise no one else is going to believe in me. Through this experience, I have learned to stand up for myself and trust in the process. KDO has an excellent team, and I hope to find a job that demonstrates the same level of support and professionalism. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 47 References American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. 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Improving Data Quality When Surveying Children and Adolescents: Cognitive and Social Development and Its Role in Questionnaire Construction and Pretesting. Netherlands, New Amsterdam. Deutskens, E., De Ruyter, K., Wetzels, M., & Oosterveld, P. (2004). Response rate and response quality of internet-based surveys: An experimental study. Marketing letters, 15(1), 21-36. Dinold, M., & Zitomer, M. (2015). Creating opportunities for all in inclusive dance. Palaestra, 29(4), 4550. Doody, O., & Noonan, M. (2013). Preparing and conducting interviews to collect data. Nurse Researcher, 20(5), 2832. https://doi.org/10.7748/nr2013.05.20.5.28.e327 Duberg, A., Mller, M., & Sunvisson, H. (2016). I feel free: Experiences of a dance intervention for adolescent girls with internalizing problems. International Journal of Qualitative Studies on Health and Well-being, 11(1), 31946. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 49 Fetters, M. D., Curry, L. A., & Creswell, J. W. (2013). Achieving Integration in Mixed Methods Designs-Principles and Practices. Health Services Research, 48(6pt2), 21342156. https://doi.org/10.1111/1475-6773.12117 Gao, Z., Zhang, P., & Podlog, L. W. (2014). Examining elementary school childrens level of enjoyment of traditional tag games vs. interactive dance games. Psychology, Health & Medicine, 19(5), 605613. Green, L., & Kreuter, M. (1999). The precedeproceed model. Health promotion planning: An educational approach. (3rd Ed.). Mountain View (CA): Mayfield Publishing Company, 32-43. Hagensen, K. P. (2015). Using a dance/movement therapy-based wellness curriculum: An adolescent case study. American Journal of Dance Therapy, 37(2), 150175. Hanna, J. L. (1995). The power of dance: Health and healing. The Journal of Alternative and Complementary Medicine, 1(4), 323-331. IHI. (2012). Quality Improvement 102: The Model for Improvement: Your Engine for Change Jones, L. (n.d.). 10 Tips for Navigating a Nontraditional OT Fieldwork. AOTA Student Pulse. Kids Dance Outreach. (n.d.). Retrieved from https://kidsdanceoutreach.org/ Kreutzmann, M., Zander, L., & Webster, G. D. (2018). Dancing is belonging! How social networks mediate the effect of a dance intervention on students' sense of belonging to their classroom. European Journal of Social Psychology, 48(3), 240-254. Lin, M. L., Chiang, M S., Shih, C.H., & Li, M.F. (2018). Improving the occupational skills of students with intellectual disability by applying video prompting combined with dance pads. Journal of Applied Research in Intellectual Disabilities, 31(1), 114119. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 50 Lemonia, D., Goulimaris, D., & Georgios, M. (2017). Social skills and prediction of the quality of life of adolescents. The case of dance and physical activities. Journal of Physical Education & Sport, 17, 502508. Martnez, A. D., Martnez, L. I., Bouzas, R. S., & Ayn, P. C. (2019). Feasibility of a dance and exercise with music programme on adults with intellectual disability. Journal of Intellectual Disability Research. Masunah, J. (2016). Multicultural dance education for teaching students with disabilities. Multicultural Education, 23(3), 26. McLoughlin, C. S., & Kubick Jr., R. J. (2004). Wellness promotion as a life-long endeavor: Promoting and developing life competencies from childhood. Psychology in the Schools, 41(1), 131141. NAMI. (2019). Mental Health by Numbers. Retrieved from https://www.nami.org/learnmore/mental-health-by-the-numbers National Institutes of Mental Health (2018). "Suicide." Retrieved from https://www.nimh.nih.gov/health/statistics/suicide.shtml Reja, U., Manfreda, K. L., Hlebec, V., & Vehovar, V. (2003). Open-ended vs. close-ended questions in web questionnaires. Developments in applied statistics, 19(1), 159-177. Rowley, J. (2014). Designing and using research questionnaires. Management Research Review, 37(3), 308-330. SAMHSA. (2015). Behavioral Health Trends in the United States: Results from the 2014 National Survey on Drug Use and Health. Scaffa, M., Reitz, S., & Pizzi, M. (2010). Occupational therapy in the promotion of health and wellness. FA Davis Company. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 51 Scaffa, M. E., & Reitz, S. M. (2013). Occupational therapy community-based practice settings. FA Davis. Sue, V. M., & Ritter, L. A. (2012). Conducting online surveys. Sage. Stogdill, R. M. (1950). Leadership, membership and organization. Psychological Bulletin, 47(1), 114. https://doi.org/10.1037/h0053857 Trueman. (2015). Unstructured Interviews. Retrieved from https://www.historylearningsite.co.uk/sociology/research-methods-insociology/unstructured-interviews/ University of California Riverside. (2014). Seven dimensions of wellness. Retrieved from https://wellness.ucr.edu/seven_dimensions.html Ward, S. A. (2008). Health and the power of dance. Journal of Physical Education, Recreation & Dance, 79(4), 33-36. Zitomer, M. R. (2016). Dance makes me happy: Experiences of children with disabilities in elementary school dance education. Research in Dance Education, 17(3), 218234. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 52 Appendix Table A1: Staff Survey 1. What is your position/ role with KDO? (Select all that apply) a. director b. teaching artist c. teaching assistant d. musician e. administration f. other 2. How many years have you been working for KDO? a. Less than 1 year b. 1 year c. 2 years d. 3 years e. 4 years f. 5 years g. Greater than 5 years 3. What drew you to working for this organization? 4. How would you rate your satisfaction when FIRST starting to work for this organization? 0-10 (0- Extremely Unsatisfied 5-Neutral 10- Extremely Satisfied) 5. How would you rate your satisfaction in working for this organization NOW? 0-10 (0- Extremely Unsatisfied 5-Neutral 10- Extremely Satisfied) 6. If your level of satisfaction has changed from start to now please explain. 7. Has your role/ position changed since starting with KDO? a. Yes b. No c. Unsure 8. If yes, how has your change in role/position impacted your overall satisfaction? 9. Please explain how you feel collaborating and communicating with all KDO staff? 10. Do you feel you can come to your directors for questions/ concerns? a. Yes b. No c. Unsure 11. If no/unsure please explain. 12. Do you feel you receive information regarding schedules, updates, etc. in a systematic, organized, and timely manner? a. Yes b. No c. Sometimes 13. If no/ sometimes, what changes would you make in regard to how you receive information? 14. How do you feel when working with students in all KDO programs? 15. Does your level of satisfaction change depending on the KDO program you are assisting with? a. Yes b. No c. Sometimes d. Unsure 16. If yes, sometimes, unsure: what programs promote the greatest level of satisfaction/ least level of satisfaction? 17. What influences a change in your personal level of satisfaction? 18. What impact/ affect do you see the KDO school programs have on the students who attend? 19. What impact/ affect do you see the KDO adaptive dance program have on the students who attend? 20. What impact/ affect do you see the KDO SWAT program have on the students who attend? 21. What impact/ affect do you see the KDO X Team program have on the students attend? 22. What impact/ affect do you see the KDO IMAGINE Project program have on the students attend? 23. If you have or currently assist with the KDO school program, how do you feel the relationship with the school staff impacts the effectiveness of the KDO program? 24. Are there currently any school programs you feel KDO is NOT being utilized to its fullest potential? If so, which schools and why? 25. How do you feel the KDO school program does with incorporating students with disabilities and/or behavioral concerns into the program? 26. What challenges, concerns, questions do you have in regard to engaging students with disabilities and/ or behavioral concerns into the KDO programs? 27. If you have or currently assist with the KDO Adaptive dance program, do you feel you have an adequate understanding of the down syndrome diagnosis? 28.How do you feel the KDO class structure/ layout impacts the students perception of the KDO program when considering the following for ALL programs: Physical Practice Environment Student Teacher Ratio Attendance Length of Practice 29. Are there any KDO programs you do not feel comfortable/ qualified working with? If yes, in what ways could we assist in making you feel more comfortable/ qualified? 30. Please list any additional comments or concerns you would like to share. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 53 Table A2: KDO Board Member Evaluation KDO Board Member Evaluation 1. How long have you been a KDO Board Member? 2. How did you learn/ become associated with KDO? 3. Why did you become involved in the organization, and what has your involvement looked like over time? 4. What attributes (strengths & opportunities) does the KDO board have that enables them to accomplish the nonprofits goals? 5. Do you feel you have an adequate understanding of all KDO programs? 6. How would you describe or promote KDO and its programs to others? 7. How would you characterize the boards role in the nonprofit organization? 8. What improvements would you like to see made as a KDO board member? Are there any areas of weakness you feel need to be addressed? 9. What information would be helpful for you to better complete your tasks/ role as a KDO board member? Any additional comments/ concerns? KIDS DANCE OUTREACH: A PROGRAM EVALUATION Table A3: KDO Student Evaluation 54 KIDS DANCE OUTREACH: A PROGRAM EVALUATION Table A4: School Program Staff Questions School Program Staff Evaluation 1. What impact/affect do you see KDO has on your students? a. Confidence b. Strength c. Happiness 2. Do you notice any change in the focus and concentration of your students before and after KDO? 3. Do you feel the environment impacts the effectiveness of KDO? 4. How do you feel KDO impacts your children with IEPs, physical disabilities, or behavioral concerns? 5. Do you have any additional information you would like to share? 55 KIDS DANCE OUTREACH: A PROGRAM EVALUATION 56 Table A5: School Program Staff Questions Update School Program Staff Evaluation: IPS 79 4th Grade Position: Length of Affiliation: 1. What impact/effect do you see KDO has on your students? 2. Do you notice any change in the focus and concentration of your students before and after KDO? 3. Do you feel the environment impacts the effectiveness of KDO? 4. How do you feel KDO impacts your students with IEPs, physical disabilities, or behavioral concerns? 5. Do you have any additional information you would like to share? KDO staff reported they feel KDO school program students experience the greatest impact in the following: Dance Education, Teamwork, Respect for Others, Confidence, Body Awareness Please rate the following from Most (1) Least (5) relevant for your students: ______ Dance Education ______ Teamwork ______ Respect for Others ______ Confidence ______ Body Awareness Your students completed pre/post surveys before and after class. Surveys included questions in relation to their personal feelings. They were instructed to complete the survey based on their feelings in that particular moment and were told there were no right or wrong answers. Pre KDO: 94.44% of students reported feeling Great (61.11%) Good (33.33%) 0% Low Energy, 25% High Energy, and 75% reported Just Right Post KDO: 94.73% of students reported feeling Great (89.47%) Good (5.26%) following KDO. 0% reported Low Energy, 68.75% High Energy, and 31.25% Just Right Students were asked about: Confidence Strength Creativity Trusting KDO Staff/ Classmates Self-expression Teamwork Trying new things Please rate to what percentage you feel KDO impacts/effects your Students in these areas: (0%= No impact 100% Total Impact) _____ Confidence _____ Self-Expression _____ Strength (Physical) _____ Teamwork _____ Creativity _____ Trying new things _____ Trusting KDO Staff/ Classmates KIDS DANCE OUTREACH: A PROGRAM EVALUATION 57 Table A6: SWAT Parent Evaluation KDO Parent Evaluation: SWAT Team Where did you learn about KDO? What drew you to allow your child to be a member of the KDO SWAT Team? Why does your child participate in KDO and not another dance program? How long has your child participated in the KDO SWAT Team? What impact/ effect do you see KDO has on your child? Do you notice any skills your child is learning in KDO carrying over to other activities? KDO staff reported they feel KDO SWAT team students experience the greatest impact in the following: Teamwork, Challenge, Peer Relationships, Creativity, Self Confidence Please rate the following from Most (1) Least (5) relevant for your child: ______ Teamwork ______ Challenge ______ Peer Relationships ______ Creativity ______ Self Confidence Your children completed pre/post surveys before and after class. Surveys included questions in relation to their personal feelings. They were instructed to complete the survey based on their feelings in that particular moment and were told there were no right or wrong answers. Pre KDO: 97.50% of students reported feeling Great (50%) Good (47.50%) 44.74% reported High Energy. 47.37% reported Just Right, and 7.89% reported Low Energy Post KDO: 97.50% of students reported feeling Great (90%) Good (7.50%) following KDO. 59.46% reported High Energy, 37.84% Just Right, and 2.7% reported Low Energy Children were asked about: Confidence Strength Creativity Trusting KDO Staff/ Classmates Self-expression Teamwork Trying new things Please rate to what percentage you feel KDO impacts/effects your children in these areas: (0%= No impact 100% Total Impact) _____ Confidence _____ Self-Expression _____ Strength (Physical) _____ Teamwork _____ Creativity _____ Trying new things _____ Trusting KDO Staff/ Classmates KIDS DANCE OUTREACH: A PROGRAM EVALUATION 58 Table A7: X Team Parent Evaluation KDO Parent Evaluation: X Team Where did you learn about KDO? What drew you to allow your child to be a member of the KDO X Team? Why does your child participate in KDO and not another dance program? How long has your child participated in the KDO X Team? What impact/ effect do you see KDO has on your child? Do you notice any skills your child is learning in KDO carrying over to other activities? KDO staff reported they feel KDO X team students experience the greatest impact in the following: Leadership, Teamwork, Challenge, Increased Opportunity, Peer Relationships Please rate the following from Most (1) Least (5) relevant for your child: ______ Leadership ______ Teamwork ______ Challenge ______ Increased opportunity ______ Peer relationships Your children completed pre/post surveys before and after class. Surveys included questions in relation to their personal feelings. They were instructed to complete the survey based on their feelings in that particular moment and were told there were no right or wrong answers. Pre KDO: 100% of students reported feeling Great (60%) Good (40%) 100% of students felt their energy level was Just Right Post KDO: 90% of students reported feeling Great (10%) Good (80%) following KDO. 60% reported Low Energy, 10% High Energy, and 20% remained Just Right Children were asked about: Confidence Strength Creativity Trusting KDO Staff/ Classmates Self-expression Teamwork Trying new things Please rate to what percentage you feel KDO impacts/effects your children in these areas: (0%= No impact 100% Total Impact) _____ Confidence _____ Self-Expression _____ Strength (Physical) _____ Teamwork _____ Creativity _____ Trying new things _____ Trusting KDO Staff/ Classmates KIDS DANCE OUTREACH: A PROGRAM EVALUATION 59 Table A8: Correlations Between Survey Questions All Students Questions I am Feeling / My Energy Level Is I am Feeling / I Like Dancing I am Confident / Dancing in front of classmates makes me nervous I Feel Creative/ I am able to express myself through dance I am able to share feelings with classmates/staff / I feel my classmates and I are part of the same team Correlations (ALL STUDENTS) 1 Evaluation 1st Evaluation 2nd Evaluation (Pre Test) (Post Test) (Pre Test) (-.406) (-.469) (-.531) 2nd Evaluation (Post Test) (-.444) *The better the students felt the higher their energy level (-.522) (-.619) (-.546) (-.394) st *Students who felt better also reported liking to dance more No Significance No Significance No Significance No Significance (-.398) (-.467) (-.543) (-.387) *Students who report being creative did not report dance as a form of selfexpression (.294) (.461) (.272) (.424) *Students who report they are able to share their feelings with classmates and staff also felt that they were part of a team *Highlighted correlation coefficients were statistically significant. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 60 Table A9: Correlations All Students and Those Who Travel Questions I Like Dancing Correlations (Those Who Travel) 1 Evaluation 1st Evaluation 2nd Evaluation (Pre Test) (Post Test) (Pre Test) .271 .194 .194 st 2nd Evaluation (Post Test) .234 I am Feeling *Students who travel reported liking to dance more than those who did not travel -.196 -.190 -.171 I Feel Confident *Students who travel reported feeling better than those who did not travel on 3 of 4 evaluations .242 .247 .291 I Feel Strong *Students who travel reported feeling more confident than those who did not travel on 3 of 4 evaluations .218 .154 .178 I Feel Creative I Feel I Am Able to Express Myself Through Dance I Feel My Classmates and I Are Part of The Same Team *Students who travel reported feeling stronger than those who did not travel on 3 of 4 evaluations .194 .174 *Students who travel reported feeling more creative than those who did not travel on 2 of 4 evaluations -.236 -.211 -.217 *Students who travel reported feeling as though they are able to express themselves through dance more than those who did not travel on 3 of 4 evaluations .178 .161 *Students who travel reported feeling as though they are part of the same team in comparison to those who did not travel on 2 of 4 evaluations *Highlighted correlation coefficients were statistically significant. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 61 Table A10: Correlations All Students and Grade Questions I am Feeling I like Dancing Trying New Things in Front of My Classmates Makes Me Nervous Correlations (Grade Level) 1 Evaluation 1st Evaluation (Pre Test) (Post Test) .211 st 2nd Evaluation (Pre Test) 2nd Evaluation (Post Test) *Students who were in higher grades reported feeling better than students in lower grades on the first pre-test .161 *Students who were in higher grades reported liking to dance more than students in lower grades on the 2nd pre-test .160 *Students who were in higher grades reported a greater willingness to try new things than students in lower grades on the 2nd pre-test *Highlighted correlation coefficients were statistically significant. KIDS DANCE OUTREACH: A PROGRAM EVALUATION 62  ...

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... Running Head: EVIDENCE-BASED PRACTICE AT IHTSC 1 Facilitating Evidence-Based Practice at the Indiana Hand to Shoulder Center Kathryn Boomershine, OTS May, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Ms. Erin Peterson, DHSc, OTR, CHT EVIDENCE-BASED PRACTICE AT IHTSC 2 A Capstone Project Entitled Facilitating Evidence-Based Practice at the Indiana Hand to Shoulder Center Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Kathryn Boomershine OTS Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date EVIDENCE-BASED PRACTICE AT IHTSC 3 Abstract The Indiana Hand to Shoulder Center is a leader in upper extremity rehabilitation and treatment and publishes the Diagnosis and Treatment Manual that hand therapists use across the country. To join the trend towards evidence-based practice, the Editor, Director of Therapy, and Education Director desired to include evidence in the next edition of the Diagnosis and Treatment Manual. My unique skills as a future OTR allowed me to complete a needs assessment with relevant stakeholders to establish criteria for appropriate articles. I then provided a skilled intervention by scouring databases and selecting 370 articles as appropriate for inclusion in the manual. I delivered a final product to my site, including a template of articles selected as best matching the sites needs. The therapists that use the Diagnosis and Treatment Manual will be able to see and use the evidence that I provided when the next edition is published allowing for further integration of evidence-based practices. EVIDENCE-BASED PRACTICE AT IHTSC 4 Facilitating Evidence-Based Practice at the Indiana Hand to Shoulder Center Literature Review Evidence-based practice (EBP) has become an integral part of the occupational therapy educational experience. There are several benefits of EBP according to the literature: improved knowledge base, improved client outcomes, and improved practice overall (Myers & Lotz, 2017; Thomas & Law, 2013). Practice settings are not always able to continue this trend of EBP utilization due to various challenges (Myers & Lotz, 2017; Upton, Stephens, Williams, and Scurlock-Evans, 2014). One possible challenge may be the fundamental miscommunication regarding the definition of evidence, which could influence how companies and practitioners interact with current literature. This disparity could be explained by the Diffusion of Innovation model (Rogers, 1983), which is the theoretical basis for this Doctoral Capstone Experience (DCE) at the Indiana Hand to Shoulder Center (IHTSC). IHTSC will publish the 5th version of the Diagnosis and Treatment Manual (DTM) soon, with the notable addition of research articles and EBP to accompany therapy protocols. This inclusion promotes EBP in current treatment practice and bridges the gap between traditional definitions of evidence and the definition used by most practitioners. Innovations in Practice The disparity of definitions of evidence is likely due in part to the changing nature of innovations. According to the Diffusion of Innovation model, first proposed by Everett M. Rogers, Diffusion is the process by which an innovation is communicated through certain channels over time among the members of a social system (Rogers, 1983, p. 5). This process takes time. The fact that EBP is seen as desirable in most practice areas is a sign that the diffusion has moved past the Trial Use (Rogers, 1983) phase. Practitioners are now moving towards the Adoption and Institutionalization phases (Rogers, 1983). According to Rogers EVIDENCE-BASED PRACTICE AT IHTSC 5 (1983), institutionalization ends the innovation diffusion as it is no longer a new idea. The IHTSC is contributing towards this institutionalization by including literature, articles, and other evidence in the DTM for the first time in this edition. Support for EBP in Practice Myers and Lotz (2017) found that institutional support can determine the success of EBP initiatives by providing leadership and incentives for change (Myers & Lotz, 2017). Upton et al. (2014) also found evidence that management and peer support increases use and competence with EBP. Therefore, in the diffusion of the innovation of EBP use, institutions must adopt the innovation along with individual practitioners. This could be done through creating journal clubs, facilitating a culture of research, and even facilitating collaboration between departments and disciplines. Thomas and Law (2013) found six mechanisms that acted as catalysts for change: building confidence, finding flow, accumulating reward, conferring with others, constructing know-how, and channeling time (e59). Institutions that allow practitioners time for research and evidence-review activities would be defined as earlier adopters using the Diffusion of Innovation (Rogers, 1983) model. Thomas and Law (2013) reported the need for a social context in research and EBP. This could be anything as simple as consulting with a colleague, or as complex as a structured and expert-led journal club. One innovative way of furthering EBP using a social context is the hosting of students from local universities. Thomas and Law (2013) described that involvement in research, including hosting students, increased the use of EBP in the organizations. Szucs, Benson, and Haneman (2017) structured an academic class as a journal club. They found that a journal club may easily be implemented into most practic [sic] settings (Szucs et al., 2017, p. 147). Additionally, Thomas and Law (2013) reported that hosting students is a rewarding EVIDENCE-BASED PRACTICE AT IHTSC 6 experience despite the clinical and time demands. This social aspect of research and EBP is important to the successful diffusion of the innovation of integrating evidence into practice. When institutions look to train practitioners in the use of EBP, there are important considerations to ensure the best outcomes. Myers and Lotz (2017) reported that journal clubs and collaborative continuing education increased clinicians confidence and knowledge when using EBP. In addition, the resources that incorporated EBP also facilitated active participation (Myers & Lotz, 2017). This reinforces the importance of the social aspect of EBP, and by extension the nature of the diffusion of innovation. Thomas and Law (2013) found that practitioners preferred discussion groups and face-to-face interactions in continuing education. Therefore, when institutions look to support the diffusion of the innovation of evidence in practice, they should also consider the necessity of the social aspect of learning. Challenges to EBP in Practice Not all institutions are supportive of the diffusion of the innovation of evidence integrated into practice. These institutions would be classified as late adopters in the Diffusion of Innovation model (Rogers, 1983). Upton et al. (2014) found that there is a general lack of institutional support for EBP, which hinders practitioners integration of evidence into practice. In addition, researchers claimed reimbursement agencies were not demanding or supporting EBP (Upton et al., 2014). The lack of support from reimbursement sources is concerning as many long-term changes in practice are currently driven by payer sources. The efforts of clinicians to implement EBP is also complicated. Despite some workshops and interventions causing a reported increase in skills, this does not translate into changes in practice (Myers & Lotz, 2017; Upton et al., 2014). Individual stressors can also impact therapists ability to adopt innovations. Researchers have identified workload and time pressures as well as decreased access and understanding of EVIDENCE-BASED PRACTICE AT IHTSC 7 EBP (Myers & Lotz, 2017; Upton et al., 2014). Additionally, researchers named time constraints, technical challenges, and lack of relevant content as barriers (Myers & Lotz, 2017). It is clear that to have successful diffusion of innovations, such as incorporating evidence into practice, therapists must aim to overcome individual and organizational barriers. Occupational Therapy Scholarship One way that occupational therapy programs have addressed these barriers is to educate new graduates on the importance of EBP. A consensus among many sources was that the recency of graduation, the higher a practitioners education level, and postgraduate training were all associated with increases in EBP behaviors in practices (Szucs et al., 2017; Thomas & Law, 2013; Upton et al., 2014). This could be in part because of an increase in deliberate inclusion of EBP into the curricula of occupational therapy programs. Szucs et al. (2017) held a graduate course in order to examine the views of students related to EBP. Students reported increased confidence in understanding statistics, but a consistent barrier throughout the program was the time involved (Szucs et al., 2017). An interesting finding is that students were enthusiastically engaged in class discussions in contrast to writing-intensive assignments students were actively engaged in the EBP process through small and large group discussion. Discussions were lively and continued on beyond the minimal time requirements set for the assignment (Szucs et al., 2017, p. 147). This enthusiasm of students is an encouraging glimpse of future practitioners. Thomas and Law (2013) discussed the importance of a working relationship between practice settings and local universities. They emphasized that relationships could identify practice needs, prioritize research, and apply the results of research to clinical settings. They also reported that active, working relationships with universities considerably influence the use of EBP in clinics (Thomas and Law, 2013). The experience of hosting students is not only beneficial to the students and the university, but also to the hosting organization. Thomas and EVIDENCE-BASED PRACTICE AT IHTSC 8 Law (2013) stated the more experience clinicians developed through clinical encounters, mentoring of students, and participation in continuing education and research, the greater their capacity to integrate research into practice (e59). These findings support the importance of hosting students as their positive views towards EBP can help diffuse the innovation and move evidence into practice. Clinical Definitions of Evidence Clinicians appear to have a different definition of evidence though, and this gap is vital to address. Thomas and Law (2013) found that clinicians considered their experiences an important source of evidence, and experience influenced clinical decision-making. The longer that a clinician had been in practice, the less skilled they were in appraising research evidence despite increased clinical and personal experience (Thomas & Law, 2013). This belief that clinical experience and accumulation of setting-specific knowledge is also a form of evidence as innovation. Dougherty, Toth-Cohen, and Tomlin (2016) found that therapists integrated research with their experiences before integrating the evidence into practice. They felt their background knowledge was a critical part of client-centered decision-making (Dougherty et al., 2016). This perspective would indicate that therapists were already using evidence to inform their practice, but not evidence as defined by academia and the traditional structure of research literature. The stock of knowledge and experience accumulated over a clinical career is augmented by research articles and other evidence as defined by academia (Dougherty et al., 2016). This combination increases efficacy and accuracy in client-centered clinical reasoning for practitioners (Dougherty et al., 2016). Clinical and personal experience is impacting client care more than published research literature but is no less valuable. EVIDENCE-BASED PRACTICE AT IHTSC 9 The role of influencing practice is traditionally left to research articles and evidence in the academic definition, but in this case, practice is influenced by the evidence of experience, knowledge, and intervention ideas. Practitioners ability to synthesize information from multiple sources influenced their ability to grade or change interventions to be more client-centered, skills foundational to clinical reasoning (Dougherty et al., 2016). Clinical reasoning is initially developed in educational programs, but only experience can truly develop effective clinical reasoning. This reasoning allows clients to benefit from a therapists accumulated knowledge, their past experiences, and their personal expertise, rather than the results of a research study or a published article. Evidence from Thomas and Law (2013) also found professionals considered their experiences to be important evidence that influenced if and how they used research in clinical decisions. This supports the perspective that practitioners have a unique definition of evidence. Although studies have investigated therapists perspectives on traditionally defined evidence and found research skills lacking, this perspective suggests that evidence should be redefined to include the therapists accumulated knowledge and experiences. Thomas and Law (2013) found that instead of research evidence, clinicians used colleagues, clinical experience, and continuing education opportunities for clinical decision-making. Therefore, therapists are using the social aspect of evidence as described previously, but instead of research articles, therapists are exploring the experiences and knowledge of others through a social experience. Upton et al. (2014) also supported this perspective describing that practitioners often use peers for queries instead of researching in databases. When they did use research, clinicians often preferred summaries of context-relevant information (Thomas & Law, 2013). In addition, expert clinicians classified some information as foreground (e.g. information about each client) and other information as background EVIDENCE-BASED PRACTICE AT IHTSC 10 (e.g. information from textbooks and journals, professional development activities) in making clinical decisions (Thomas & Law, 2013, e59). Dougherty et al. (2016) also found that practitioners considered evidence from the clients performance as critical for clinical decisions, rather than literature and research findings. Along with this practice-based evidence, background knowledge, and personal experience, Thomas and Law (2013) indicated that reflection is the formalized process of turning those everyday experiences into clinical evidence. Practitioners will not benefit from their experiences if they do not engage in reflection. The therapists that treat their own clinical experience and expertise as evidence in equal or better standing to research-based literature evidence would be regarded as innovators according to the Diffusion of Innovation theory (Rogers, 1983). These innovators are working towards a more widespread view of personal experience as evidence, leading some early adopters to blend clinical evidence with research evidence in order to improve patient outcomes. The new edition of the DTM however, will blend these two types of evidence. It currently contains the experience and knowledge of several therapists and surgeons who specialize in hand therapy. After this DCE project, the new edition also includes research articles that contribute to the treatments and protocols. Evidence and the DTM This DTM is used by many other hand clinics nationally and internationally. This allows for a widespread diffusion of innovation, blending the experience of specialists and therapists with the research evidence from recent literature. At this stage, the IHTSC is moving towards the Institutionalization stage of the Diffusion of Innovation model (Rogers, 1983). When the idea becomes fully institutionalized, it is no longer an innovation, as stated earlier (Rogers, 1983). Using the definition of clinical reasoning proposed by Dougherty et al. (2016), the DTM is clinical reasoning at its finest. My research for the conditions in the DTM EVIDENCE-BASED PRACTICE AT IHTSC 11 contributes to a broader definition of evidence in evidence-based practice, and ultimately leads towards institutionalization of a vital innovation: the integration of evidence into everyday practice. Additionally, the IHTSC influences protocols and treatments in hand and upper extremity therapy with publication of the DTM. Clinics across the United States, as well as internationally, use the DTM to guide the overall treatment of their clients with upper extremity conditions. This influence allows the clinic to lead in innovative treatment solutions. According to the Diffusion of Innovation model (Rogers, 1983), the process of diffusion is the way an innovation is spread among a group. The Director of Therapy is an innovator in the clinic, the Education Director is an innovator in staff education and evidence-based practice (EBP), the Editor of the DTM is an innovator in therapeutic protocols and EBP, and this DTM is the ideal way to diffuse innovations to other practitioners. Needs Assessment Evidence for DTM I began my needs assessment with the Director of Therapy before arriving at the site, as I was creating my Memorandum of Understanding. My clients major need was revising the DTM. EBP is not integrated into the current, published edition of the manual, placing users at risk for suboptimal treatment outcomes and patient experiences. My client requested specifically that I find and collect evidence for inclusion in the manual. The intervention to address this performance problem involved my skills as an occupational therapy student to increase the occupational wellness and role competence of the practitioners using the DTM. During my needs assessment, I learned the specific search parameters that the Editor and Education Director required of me to locate appropriate EBP resources. Articles needed to be published in 2014 or later, in English, and be relevant to therapeutic practice instead of solely EVIDENCE-BASED PRACTICE AT IHTSC 12 surgical practice. Thomas and Law found in their 2013 study that clinicians favored high quality, synthesized research summaries (e58) which would be evidence at or near Level 3 (Burns, Rohrich, & Chung, 2012). However, the Editor and Education Director needed higher levels of evidence, where practitioners conducted research themselves and evaluated the efficacy of a protocol or treatment. According to Burns et al. (2012), this research would be Level 1 or Level 2. This demonstrated IHTSCs commitment to innovation diffusion, as they sought higher levels of evidence and more recent articles to use as resources in the DTM. Annotated bibliography While talking with the Director of Therapy, she made it clear that I would need to include clinical reasoning to justify the inclusion of certain articles in the DTM. I planned to create an annotated bibliography as I found appropriate articles in my searches. This bibliography would allow me to track my reasoning for selecting an article. I would also pull out relevant measurements and figures from the articles as needed, for highlighting the importance of each article. I discussed this plan with the Director of Therapy and the Education Director and they expressed support. I also discussed my plan to consult with them once per week if I had any questions about the appropriateness of an article. They stated that once per week would be enough and that they did not feel we would need a more frequent schedule. Article template The Education Director had created a sample template for me to use as a base. She encouraged me to make changes to the layout as I felt appropriate and emphasized that it would be presented as my final product for inclusion into the manual. I asked if I should include my clinical reasoning from the annotated bibliography as well as the citation. The Education Director stated that it made sense to include the reasoning and that she was excited to see what I could produce. EVIDENCE-BASED PRACTICE AT IHTSC 13 Fellows Talks research The Education Director holds monthly meetings with the surgical fellows at IHTSC. In these meetings she reviews common upper extremity diagnoses, conservative therapeutic treatment options, and the therapeutic protocols after certain procedures. She encourages an active dialogue at the end between the fellows and the therapists in attendance. During the needs assessment, she stated that in addition to the research for the DTM, she would need my help to find current evidence that she could integrate into the Fellows Talks. She planned to contact me with the condition to be presented each month and would invite me to the talks so that I could see the direct results of my research. I appreciated her plan to integrate me into the talks and demonstrate the immediate results of my research, especially since the DTM will not be finalized during my time at IHTSC. Similarities to Traditional Practice One similarity of the needs assessment to traditional practice was my client-centered, occupation-centered approach. My needs assessment was client-driven, and I addressed my clients occupation of work, specifically job performance. I let my clients values drive my search: ethical and high-quality practice using recent, relevant articles. Hand therapists have high-level cognitive client factors due to the specialty nature of the site, so introductory articles would not be appropriate. Hand therapy is a specialty area of occupational therapy, and so necessarily requires specialized knowledge and advanced cognitive client factors. My intervention affected my clients performance patterns, specifically their role as a treating therapist. To use the language of MOHO (Cole & Tufano, 2008), my intervention increased my clients occupational competence and performance capacity so that they could participate in the occupation of work. EVIDENCE-BASED PRACTICE AT IHTSC 14 My intervention and my clients occupational performance took place within a context that places an increasing value on EBP. Reimbursement agencies are placing a greater importance on interventions supported by evidence in order to justify payment. The American Occupational Therapy Association (AOTA) and their ethical standards, also influence treatment: the principle of Beneficence includes a standard of conduct that states therapists will use evaluation and treatment methods that are evidence-based and current (AOTA, 2015, p. 2). These external factors support the contextual need for practitioners to be competent in the integration of EBP into regular client care. Differences to Traditional Practice My needs assessment was different from traditional practice due to the non-traditional setting. I was unable to complete a standardized chart review as my client is the group of practitioners who use the DTM. However, I was able to use skilled observations from a previous internship at the clinic to better understand my clients needs. The therapists worked in a highly collaborative manner and frequently consulted with one another throughout the day. The patients seen are also higher-complexity than the outpatient hand clinic where I completed my first Level II Fieldwork Experience. Therapists also consulted surgeons on a regular basis when there are questions about a therapy order or the direction of intervention. This was a more interdisciplinary approach to patient care than I have seen at my fieldwork sites. All of this informed my search for articles and my clinical reasoning about what articles would be appropriate: entry-level articles would not be appropriate, but articles from a journal regarding hand surgery or upper extremity surgery could still inform therapeutic practice. Furthermore, I could not use a traditional assessment tool, since this intervention would affect my clients overall clinical practice. Instead, I planned to use regular meetings with the Director of Therapy and Education Director to ensure that my intervention was appropriate for EVIDENCE-BASED PRACTICE AT IHTSC 15 improving clinical practice of my client. These meetings and consultations would address my progress on the article search for the DTM as well as my research for the Fellows Talks that the Education Director presents every month. Implementation Phase During my DCE, I met regularly with my client to ensure client-centered care. My main task was combing databases to gather recent, relevant, high quality articles for inclusion into the DTM. The client (Editor, Education Director, and Director of Therapy) had provided criteria for each article to meet: the article had to have been published within the last five years (20142019), include therapeutic outcome measures or tools (e.g. QuickDASH, Michigan Hand Questionnaire, goniometric measurements), and define client performance (change in function, change in outcomes, etc.). Overall, the intervention enhanced my clients occupational performance of EPB utilization, thereby improving clinical skills, through providing evidence for inclusion into the DTM. I also provided EBP resources to the Education Director for integration into the Fellows Talks. Both internal and external factors motivated my client for this increase in EPB including quality improvement, therapist interest, and payer sources. Lastly, the final product was a physical resource I delivered to my client fulfilling their request. Evidence for DTM When searching the databases, I primarily used common terminology, MeSH terminology, and CINAHL terminology, with Boolean logic as necessary (see Appendix A for the complete search log). I utilized Academic Search Complete, Biomedical Reference Collection: Basic, CINAHL Plus with Full Text, SPORTDiscus with Full Text, and MEDLINE databases using the EBSCOhost search engine ( 2019, EBSCO Industries, Inc.). These databases were chosen for their relevance to healthcare and occupational therapy fields. As an example, for the condition of wrist arthrodesis, I searched: EVIDENCE-BASED PRACTICE AT IHTSC 16 therapy AND wrist fusion therapy AND wrist arthrodesis therapy AND total wrist arthrodesis therapy AND partial wrist arthrodesis therapy AND partial wrist fusion I found that replacing the word wrist with the word carpal in the searches produced zero results. When necessary, I consulted with my universitys reference librarian to analyze search terms and use appropriate language for searching all databases. The sites librarian was also consulted when certain necessary articles were inaccessible without a clinic membership. The more general the terms that I used, the more articles would be returned. I set 150 articles as my cutoff point for narrowing the search based on the advice of the consulting reference librarian: if a query returned less than 150 articles, I would then begin screening articles. However, if a query returned more than 150 results, I would change the query to a more specific one and run the search again. Through the process, I followed the clients standards and placed limiters for publication date (January 2014December 2019) and for language (English). My unique skills as an occupational therapy student were necessary for an effective search process and desired results. I used an occupation-based perspective with the biomechanical frame of reference in order to guide my searches. I was able to use my clinical reasoning to determine which articles would be more relevant to clinical practice versus surgical practice, and which articles were more holistic in the treatment of the patients included. To remain client-centered throughout the process, I would meet once per week on average with the Director of Therapy and Education Director to discuss whether certain articles matched their criteria for inclusion; specifically, to verify if an articles topic was of clinical or therapeutic importance/relevance. This allowed me to eliminate articles that would not serve my client and EVIDENCE-BASED PRACTICE AT IHTSC 17 meet the goal set in the needs assessment. I was also familiar with the standard therapeutic assessments used in the setting of outpatient hand therapy and was able to use this knowledge to further filter articles that did not include common, standard, or gold-standard assessments. I used the biomechanical frame of reference (Cole & Tufano, 2008) to guide my searches since my clients will better treat patients with evidence that is relevant to the condition, the model, and the frame of reference used in practice. I knew which journals were commonly used and which journals would not be of use to my client; this made me more efficient when combing databases for relevant articles. I was consistently collaborating with the client to ensure that my intervention (searching, synthesizing, and providing evidence) was appropriate. Furthermore, I received positive feedback from my clients throughout the process. This interchange between client and therapist will make me a better practitioner, just as providing evidence in my intervention will help my clients in their occupational performance and role competence. Annotated Bibliography After collecting all appropriate articles for a condition, I independently created an annotated bibliography for each reference citation. This allowed me to detail the occupationbased clinical reasoning behind retrieving/including a particular article. To create these annotations, I examined the discussion sections of each article for clinical relevance of results, the methodology used to select participants, and the tools used to assess progress/change. This process was unique to my skills as an occupational therapy student as I am familiar with the statistical concepts used in research as well as the treatment standards of care. This thorough process allowed me to filter out articles that had an abstract that seemed relevant, but upon further reading was not appropriate for inclusion in the article; for example, a study with low statistical power, or poor methodology. EVIDENCE-BASED PRACTICE AT IHTSC 18 I collected more articles than the one to three requested by the client to ensure high rigor of my work. I compared the articles using the annotated bibliography in order to sort the most recent with the highest level of evidence, most relevance to hand therapy, and most therapeutically-focused content for final presentation to the client. The relevance was determined by consulting with my client to verify its appropriateness for inclusion. The therapeutic focus was assessed by clinical reasoning that I gained through my Occupational Therapy Doctoral program and my familiarity with the standards of hand therapy and with current practice. Article Template In order to present the final selection of articles to the client, I independently created a template organized by chapter in the DTM (see Appendix B for sample template). Each chapter was broken down further by condition (e.g. shoulder: rotator cuff tear, rotator cuff repair) or body part (e.g. fracture: digital, wrist, elbow). This template provided the citations and summaries that will be included in the new edition of the DTM alongside each condition as appropriate. To ensure that it was a client-centered tool, I initially presented a sample template to the Education Director and the Director of Therapy with the conditions amputation, arthritis, and arthrodesis completed. Both directors indicated that this template was satisfactory and that I had chosen appropriate articles that would fit well into the DTM. Electronic versions of all articles, regardless of inclusion in the final template, were saved into a personal database on a site laptop. I organized them by chapter in the DTM as well. This framework and personal database I created also allowed the client to access all articles saved during my research as needed. Fellows Talks research The Education Director was especially interested in my research and how it could support her Fellows Talk each month. This event educates the surgical fellows about therapy protocols EVIDENCE-BASED PRACTICE AT IHTSC 19 and different evidence-based treatment options. My research allowed her to increase the evidence in her education specifically about thumb carpometacarpal arthritis and elbow fractures. She is also the liaison with the physicians when they have questions about the current literature in treatment. For example, one of the surgeons at the clinic wanted to know if there was literature on using mirror therapy with orthopedic clients. The Education Director reached out to me and I provided current literature that was of high enough quality to merit sharing with the surgeon. The Education Directors clinical leadership and unique role at the clinic is an example of a workplace support for EBP (Myers & Lotz, 2017). Societal need My work on the DTM met the societal need of deliberate EBP use in occupational therapy. I worked closely with the Director of Therapy and the Education Director to ensure that I was selecting relevant and appropriate articles to include in the DTM which will improve the EBP of all the therapists who use the manual. Since many practitioners are unfamiliar with the research skills required to successfully perform a thorough search (Thomas & Law, 2013), my work on the DTM will allow practitioners to use EBP without having to locate and synthesize articles themselves. Quality Improvement Processes Throughout the process of my DCE, I created several resources that IHTSC can use for continuous quality improvement of future editions of the DTM. The annotated bibliography that I created provided justification for including certain articles as well as a brief summary of the articles found. This provided a clear outline of the method that I used to determine if articles were appropriate so that editors can follow the same method when determining which articles are appropriate for future editions. EVIDENCE-BASED PRACTICE AT IHTSC 20 The template that I created for selected articles also functions as a method of quality improvement. If I could not locate quality research on a specific condition, I left the area blank so that future authors and editors could contribute here with updated materials or if further information became available. Additionally, I wrote summaries of pertinent information included in the articles so that the editors can determine which are most appropriate to keep as well as prevent future editions of the DTM from becoming overloaded with older or irrelevant information. Leadership Skills Throughout this experience, I developed leadership skills necessary for advanced practice. I advocated for my position as a resource for clinicians as well as a resource for the surgical fellows. I collaborated with the Education Director to provide appropriate articles for the monthly Fellows Talk and advocated for the inclusion of certain articles in the presentations. I was able to direct therapists to certain journals or search terms when necessary and I led the inclusion of EBP with specific articles into my clients occupational performance. My intervention directly and positively influenced my clients role competence as treating therapists since I knew which articles and resources would be appropriate for a practicing therapist. I know and understand the unique frames of reference, therapy protocols, and the common tools used by occupational therapists in the field of hand therapy which made my searches and my overall intervention more client-centered and more efficient. Staff Development In addition to my contributions to the DTM, I also facilitated increased staff knowledge of evidence-based practices. In the previously mentioned Fellows Talks, I used my specialized knowledge as an occupational therapy student to discern which articles would be more appropriate for surgical fellows rather than practicing therapists or therapy students. This type of EVIDENCE-BASED PRACTICE AT IHTSC 21 code-switching, from medical professional to client, was a necessary skill for me to develop as an advanced practitioner. The surgical fellows expanded their knowledge base and occupational competence by observing the therapist perspective and conservative treatments. In addition to the Fellows Talks, I received requests from various staff members on specific topics. These staff members were curious what the latest evidence was and wanted to ensure evidence-based treatment without sacrificing patient treatment time to investigate the literature. I was able to serve this need, find recent and relevant articles for each requested condition, and improve the therapists occupational performance of patient treatment. Discontinuation Throughout my capstone, I improved the use of EBP at IHTSC. My research promoted the use of current evidence in the monthly surgical Fellows Talks and the next edition of the DTM. I created a template to allow easy inclusion of articles into the manual and the justification for their selection; this template can be used after I leave the site for any future editions. The Fellows Talks given by the Education Director each month improved with the inclusion of current therapy protocols and outcomes. The surgical fellows can now better advise their patients on what to expect from a given procedure. The fellows were also interacting with the therapists present at the Talks, indicating an increased willingness to collaborate with treatment providers after the surgery. This interdisciplinary collaboration can help preserve continuity of care for patients, and each discipline can gain improved knowledge of procedures and outcomes. I changed the layout and publication of the DTM with the inclusion of articles I selected. This sets a precedent for future editions of the manual to include current evidence, changes in practice, and research where there is currently none. Hand therapists across the country use the DTM to guide their interventions, so my changes can directly impact practice EVIDENCE-BASED PRACTICE AT IHTSC 22 nationwide. Some conditions did not have therapeutically relevant research available; for example, despite screening 179 articles related to flexor tendon reconstruction, none were appropriate for inclusion. This gap in research is an opening for further research by hand therapists and hand surgeons. As the research becomes available, I have created a template that is flexible enough to allow for consistent changes and updates to articles for future DTM editions. My work is important because of the need to deliberately include EBP into current therapy practice. Thomas and Law (2013) found that most practitioners consult with colleagues and other practitioners, instead of formally researching a question or topic. They also found that practitioners who had recently graduated and/or had a higher degree viewed EBP in a more positive light and were more comfortable integrating it into practice (Thomas & Law, 2013). Throughout my time at IHTSC, I found that only the Education Director was comfortable searching for evidence. Other therapists would occasionally consult me for a brief search into a rarer condition, such as post-polio syndrome, but several stated they were not comfortable using databases to search for evidence. I was able to step into the gap and provide high-quality research for inclusion into the DTM. There are several forces driving the deliberate inclusion of evidence into practice besides the initiatives within a practice. AOTA stated that the ethical concept of Beneficence included a standard of conduct that practitioners will use evaluations and treatments that are evidencebased and current (AOTA, 2015, p. 2). Medicare has changed its reimbursement system to a Merit-based Incentive Payment System (MIPS), which requires organizations to provide evidence of the quality of care, patient engagement, improvement of practice, and cost of care (Medicare, 2019). Therapy facilities can use EBP to show an increased quality of care for their patients, and facilities that can increase the use of EBP can show an improvement in practice. Either condition would meet the categories described in MIPS (Medicare, 2019). IHTSC placing EVIDENCE-BASED PRACTICE AT IHTSC 23 my articles in the Diagnosis and Treatment Manual is one of the ways that could satisfy MIPS requirements. MOHO in Non-traditional Setting According to the Model of Human Occupation (MOHO), first developed by Dr. Gary Kielhofner, a persons occupation is driven by volition (intrinsic motivation), habituation (patterns and routines), and performance capacity (physical and mental skills) (Cole & Tufano, 2008). This intrinsic driving force manifests outwardly as occupational competence and occupational adaptation (Cole & Tufano, 2008). To use the language of MOHO in this nontraditional treatment setting, I developed my clients performance capacity by providing evidence for inclusion into the DTM. My client can now effectively use EBP because of enhanced performance capacity, specifically mental skills. Thomas and Law (2013) emphasized that university partnerships with clinicians diffuse EBP into practice settings. IHTSC and I both grew from my placement at this clinic. The clinic is more connected with EBP and current literature, the users of the DTM are better able to practice in their role as hand therapists, and I enhanced my research skills. I can also use the occupation-based language of MOHO to describe the impact of my interventions. My clients improved their occupational competence and mental skills as a result of my intervention. Like a traditional evaluation, I established my clients current and ideal occupational performance. Previously, there were no EBP resources in the DTM and my client wanted at least one EBP resource for each condition in the manual. The motivation for change was present as the Director of Therapy had already prepared criteria for selecting appropriate articles. My needs assessment with the Director of Therapy and the Education Director clearly showed the motivation of IHTSC to incorporate EBP. However, the routine use of EBP by EVIDENCE-BASED PRACTICE AT IHTSC 24 clinicians was lacking, and therefore the mental skill and competence necessary to incorporate evidence into client treatment was not part of the current edition of the DTM. Overall Processes and Outcomes Searching Databases Communication with client. During my needs assessment, I worked with the Director of Therapy and the Education Director to find out what topics of research were needed, and how they would determine if an article was useful. The Director of Therapy provided me a list of terms that I would search, and the Education Director informed me that she would need me to do research intermittently for her monthly Fellows Talks. I scheduled to meet with them once per week, on average, to ensure that I was finding appropriate content. During these meetings, I would discuss my findings and potential articles with the Director of Therapy and Education Director, and they would clarify which aspects of each article would make it appropriate for inclusion. This communication made my final selection of articles more useful to my client. Communication with extra-disciplinary professionals. During my intervention, I scoured databases for articles from 2014 to 2019 that would be appropriate to include in the Diagnosis and Treatment Manual. In order to make my searches more efficient, I consulted with the Reference Librarian at my university and the Librarian at IHTSC. This consultation process took place in person, over e-mail communication, and by phone. Both librarians helped me discover the trees that are used in databases to categorize and interrelate conditions. I was then able to search a wider, more thorough area in order to exhaust all potential results for a given condition. By the end of my rote database searching, I screened 21,282 articles for inclusion into the DTM. Annotated Bibliography EVIDENCE-BASED PRACTICE AT IHTSC 25 As I collected articles, I kept their citations in an annotated bibliography. The Education Director had emphasized the importance of a rationale for including a certain article during the needs assessment. Since the citations also included an article summary, specific information from my opinion of the article, or a combination of all three, the annotated bibliography was not part of the formal project that was presented to stakeholders at the end. However, the annotations allowed me to screen for the best, most relevant therapeutic articles using my clinical reasoning. I consulted with the Education Director and the Director of Therapy when I had a question about including an article. This consultation took place approximately once per week, usually through e-mail correspondence. Finally, I selected 370 articles as appropriate to include in the manual. Article Template Once I had selected the articles, I created a template for presentation to the stakeholders. The Education Director had discussed a model template with me during the needs assessment and I used this model to create a template that followed the outline of the DTM that also included article citations, a summary of the article, and my clinical reasoning to justify its inclusion. My personal library of 370 articles and the annotated bibliography that I had created throughout the process allowed me to fill in the template more efficiently. This digital resource allows for continuation of this intervention after I leave IHTSC, as future clinicians can use the framework I have built to add more articles as they become available and as the DTM progresses through later editions. This framework and personal database I created also allowed the client to access all PDFs saved during my research if needed. Leadership and Advocacy I grew in leadership skills throughout this project by advocating for the inclusion of recent evidence in the Fellows Talk, independently screening articles and creating template for evidence, and initiating consultations with outside experts as appropriate. I used the standards for EVIDENCE-BASED PRACTICE AT IHTSC 26 articles that my client had given me during the needs assessment as well as weekly consultations with the Education Director and Director of Therapy to ensure I met the clients needs and expectations. When I attended the Fellows Talks given by the Education Director, I was impressed by the interaction that regularly took place between the fellows and the therapists. The different viewpoints provided a more holistic view of the continuum of care, patient outcomes, and clinical considerations. During a presentation about various shoulder conditions, one of the therapists asked the surgical fellows about a biceps tenodesis versus a biceps tenotomy. The fellows explained that the type of procedure done is largely based on surgeon preference and that patients are sometimes bothered by the concept of cutting a tendon. It was interesting to hear the different fellows opinions of a surgeons decision, as well as various patient experiences. As therapists, we were able to explain the rehabilitation protocols, and how the surgeons actions would affect weight limitations, early mobility options, and patient pain. There was a dialogue about patient responses to surgical and therapeutic intervention, potential complications, patient education, and interdisciplinary cooperation to ensure optimal treatment outcomes. This interdisciplinary contact was exciting to experience, and I hope to continue that at a future job. I felt that there was increased rapport between the surgical fellows and the therapy staff in attendance. Conclusion Overall, this capstone experience has allowed me to grow as a professional, develop advanced research skills, advocate for the inclusion of evidence, collaborate with inter-and extradisciplinary professionals, and meet the needs of a non-traditional client in a traditional setting. I am proud of the value that I have added to the DTM and the impact that my research will have on practicing therapists. As I look toward my future career, I can see myself using my passion for research to lead treatment initiatives and interdisciplinary learning opportunities that improve EVIDENCE-BASED PRACTICE AT IHTSC 27 patient outcomes. The extremely positive feedback that I received from therapists, the Director of Therapy, the Education Director, and the Editor of the DTM reinforced the magnitude of the positive impact that I had at IHTSC. EVIDENCE-BASED PRACTICE AT IHTSC 28 References American Occupational Therapy Association. (2015). Occupational Therapy Code of Ethics. American Journal of Occupational Therapy, 69(Suppl. 3), p1-p8. Burns, P. B., Rohrich, R. J., & Chung, K. C. (2011). The levels of evidence and their role in evidence-based medicine. Plastic and Reconstructive Surgery, 128(1), 305-310. Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Dougherty, D. A., Toth-Cohen, S. E., & Tomlin, G. S. (2016). Beyond research literature: Occupational therapists perspectives on and uses of evidence in everyday practice. Canadian Journal of Occupational Therapy, 83(5), 288-296. EBSCOhost [Database]. Copyright 2019, EBSCO Industries, Inc. Medicare. (2019). Quality Payment Program, MIPS Overview. Center for Medicare and Medicaid Services, Department of Health and Human Services. Accessed from https://qpp.cms.gov/mips/overview on 3/29/19. Myers, C. T. & Lotz, J. (2017). Practitioner training for use of evidence-based practice in occupational therapy. Occupational Therapy in Health Care, 31(3), 214-237. Rogers, E. M. (1983). Diffusion of Innovations, (3rd ed.). New York, New York: The Free Press, A Division of MacMillian Publishing Co. Szucs, K. A., Benson, J. D., & Haneman, B. (2017). Using a guided journal club as a teaching strategy to enhance learning skills for evidence-based practice. Occupational Therapy in Health Care, 31(2), 143-149. Thomas, A. & Law, M. (2013). Research utilization and evidence-based practice in occupational therapy: A scoping study. American Journal of Occupational Therapy, 67, e55-e65. EVIDENCE-BASED PRACTICE AT IHTSC 29 Upton, D., Stephens, D., Williams, B., & Scurlock-Evans, L. (2014). Occupational therapists attitudes, knowledge, and implementation of evidence-based practice: A systematic review of published research. British Journal of Occupational Therapy, 77(1), 24-38. EVIDENCE-BASED PRACTICE AT IHTSC 30 Appendix A Search Log Amputation: therapy, outcome, digital amputation, rehabilitation, transmetacarpal amputation, below elbow amputation, above elbow amputation Arthritis: thumb, carpometacarpal joint, arthritis, NOT surgery, rheumatoid arthritis, therapy, gout, outcome, NOT drug, hand, occupational therapy, lupus, upper extremity, scleroderma Arthrodesis: therapy, arthrodesis, finger, rehabilitation, digit, joint fusion, distal interphalangeal joint, proximal interphalangeal joint, wrist fusion, wrist arthrodesis, total wrist arthrodesis, partial wrist arthrodesis, partial wrist fusion Arthroplasty: therapy, metacarpophalangeal arthroplasty, rheumatoid, trauma, proximal interphalangeal joint, arthroplasty, proximal interphalangeal arthroplasty, osteoarthritis, hemihamate, surgery, thumb, cmc, burton, thumb carpometacarpal joint, reconstruction, first metacarpal, wedge, osteotomy, tightrope, wrist, schecker, DRUJ, total, elbow arthroplasty, radial head, outcome, coonrad, discovery, shoulder arthroplasty, NOT reverse, radial head arthroplasty, protocol Biceps Rupture: distal biceps, rupture, outcome, therapy, conservative, NOT surgical, repair, therapy, proximal biceps, surgical Bursitis: olecranon bursitis, outcome, therapy, aseptic, NOT surgery, surgery, shoulder bursitis, subacromial bursitis, occupational therapy EVIDENCE-BASED PRACTICE AT IHTSC 31 Burns: first degree, burns, upper extremity, therapy, burn, first degree burn, superficial burn, partial thickness burn, superficial thickness burn, deep thickness burn, full thickness burn, red burn, outcome, yellow burn, black burn, superficial thickness, rehabilitation, partial thickness, full thickness Capsulectomy/Capsulotomy: dorsal, capsulectomy, metacarpophalangeal joint, capsulotomy, hand, dorsal capsulotomy, digit, proximal interphalangeal joint, DRUJ, distal radioulnar joint, elbow, global Carpal Boss: carpal boss, conservative, therapy, outcome, carpometacarpal boss, metacarpal boss, surgery, recovery, operative CRPS: complex regional pain syndrome, therapy, occupational therapy, hand Compartment Syndrome: compartment syndrome, hand, therapy, upper extremity, outcome Congenital Anomalies: camptodactyly, therapy, outcome, syndactyly, release Crush Injuries: crush injury, hand, outcome, therapy, soft tissue, digit, crush Cysts: mucous cyst, therapy, rehabilitation, outcome, inclusion cyst, hand, surgery, lipoma, giant cell tumor Dislocations: proximal interphalangeal joint, dorsal dislocation, fracture, NOT surgical volar dislocation, volar plate repair, volar plate, outcome, dorsal, hinge, elbow, posterior dislocation, NOT surgery, anterior dislocation, therapy, rehabilitation, shoulder, global dislocation EVIDENCE-BASED PRACTICE AT IHTSC 32 Dupuytrens: subtotal palmar fasciectomy, open technique, Dupuytrens fasciectomy, Dupuytrens, Dupuytren, open, splint, closed, xiaflex Extensor Tendon Injuries: mallet finger, rehabilitation, NOT surgery, therapy, surgery, central slip, outcome, delayed, repair, boutonniere, boutonniere deformity, manage, pseudo boutonniere, extensor tendon repair, delay, zone IV, hand, lateral band, injury, central slip repair, motion, early motion, extensor tendon, zone V, early, extensor, extensor tendon injury, dorsal hand, zone VI, zone VII, protocol, zone VIII, thumb, reconstruction, extensor tendon reconstruction, measure Fibromyalgia: fibromyalgia, hand, therapy, protocol, outcome, upper extremity Focal Dystonia: focal dystonia hand, rehabilitation, therapy, musician, athlete, arm, sports Flexor Tendon Repairs: flexor tendon repair, thumb, postoperative, protocol, outcome, therapy, Indiana, flexor tendon, Louisville program, delayed, delayed motion, Louisville, Mayo clinic, mayo, flexor digitorum profundus, repair, reconstruction, therapy, flexor pollicis longus, thumb flexor, rehabilitation, injury, motion, flexor pollicis, restrictions, thenar muscle, zone V, flexor, active, passive, proximal forearm, flexor carpi ulnaris, flexor carpi radialis Flexor Tendon Reconstruction: flexor tendon reconstruction, stage I, rod, first stage, therapy, rehabilitation, protocol, pronator slide, pronator, flexor pronator slide, reconstruction, flexor tendon, fractional lengthening, fractional, flexor, hand, lengthening Fractures: metacarpal fracture, closed reduction, rehabilitation, therapy, outcome, protocol, percutaneous, pin, tension band, screw, plate, proximal phalanx, fracture, closed, middle phalanx, distal phalanx, shaft, tuft, bony mallet, wrist fracture, bennett, palmar beak, carpometacarpal fracture, dislocation, lunate fracture, Keinbock, Keinbck, scaphoid fracture, EVIDENCE-BASED PRACTICE AT IHTSC 33 conservative, surgical, ulnar styloid, distal radius fracture, cast, NOT pediatric, orthosis, splint, ORIF, spanning plate, external fixator, comorbid, comorbidity, coronoid fracture, functional outcome, ROM, terrible triad, lateral collateral ligament, lateral collateral ligament complex, repair, motion, medial collateral ligament complex, medial collateral ligament, elbow, elbow fracture, midshaft humerus fracture, midshaft humerus, humerus shaft fracture, proximal humerus fracture, postoperative, clavicle fracture Ganglions: dorsal carpal ganglion, therapy, dorsal wrist ganglion, rehabilitation, volar wrist ganglion, volar retinaculum ganglion, volar carpal ganglion, volar ganglion Hematomas: hematoma, upper extremity, hand, therapy, protocol, subungual hematoma Infections: infection, risk factors, hand, hand injury, hand surgery, paronychia, cardinal signs, therapy, rehabilitation, motion, Kanavel, pyogenic tenosynovitis, flexor, pyogenic flexor tenosynovitis, splint, flexor tenosynovectomy Intrinsic Contractures: intrinsic contracture, hand, splint, rehabilitation, motion, hand contracture, orthosis, NOT Dupuytren, occupational therapy, therapy, intrinsic release, lumbrical release, release, lumbrical OR interosseous, hand release, hand release rehabilitation, NOT nerve, NOT artery, hand release occupational therapy, NOT foot, muscle, hand muscle, interosseous OR lumbrical, muscle spasticity, contracture/RH/SU/TH, muscle spasticity/RH/SU/TH, contracture/RH/SU/TH, hand/SU, fingers Ligament Injuries: collateral ligament, metacarpophalangeal joint, NOT repair, repair, rehabilitation, therapy, proximal interphalangeal joint, NOT thumb, wrist sprain, NOT surgery, carpal ligament, sprain-strain, scapho-lunate reconstruction, scapho-lunate ligament, reconstruction, scaphoid, lunate, ligament, scapholunate ligament, motion, outcome, Blatt EVIDENCE-BASED PRACTICE AT IHTSC 34 capsulodesis, triangular fibrocartilage complex, conservative, orthosis, lateral collateral ligament complex, elbow, medial collateral ligament, athlete, elbow medical collateral ligament, protocol Nail Bed Injury: nail bed injury, conservative, nail injury, therapy, rehabilitation, fingernail injury, orthosis, finger nail injury, protocol Nerve Compression Syndromes: anterior interosseous nerve, conservative, anterior interosseous nerve syndrome, therapy, rehabilitation, outcome, protocol, carpal tunnel syndrome, cubital tunnel syndrome, NOT surgery, radial tunnel syndrome, radial tunnel, thoracic outlet syndrome, occupational therapy, long thoracic nerve syndrome, long thoracic nerve, cervical radiculopathy, ulnar nerve, anterior transposition, anterior submuscular transposition, anterior subcutaneous, eaton, eaton sling, in situ, recovery, cubital tunnel release, carpal tunnel release, carpal tunnel, hypothenar fat pad flap, hypothenar fat, fat pad, adipose tissue, radial neuropathy/SU/RH/TH, posterior interosseous nerve, radial tunnel release, radial tunnel decompression, decompression, radial tunnel, surgery, medial epicondylectomy, ulnar nerve transposition, thoracic outlet surgery, neurogenic, nerve, long thoracic nerve Nerve Repairs: digital nerve repair, digital nerve surgery, common digital nerve, palmar nerve, common palmar nerve, median nerve repair, digital nerve protocol, protocol, surgery, median nerve, forearm, repair, median nerve injury, ulnar nerve repair, ulnar nerve injury, outcome, ulnar nerve, radial nerve repair, radial nerve NOT humeral fracture, radial nerve surgery NOT humeral fracture, radial nerve injury, surgery NOT humeral fractures Nerve Palsies: median nerve, orthosis, splint, NOT carpal tunnel, median nerve palsy, ulnar nerve, ulnar nerve palsy, therapy, rehabilitation, injury, ulnar nerve, median nerve, palsy, radial nerve palsy, radial nerve EVIDENCE-BASED PRACTICE AT IHTSC 35 Pulleys: pulley repair, hand, pulley rupture, pulley venting, pulley reconstruction, pulley rehabilitation Ray Resection: ray resection, postoperative, ray amputation, hand, digital ray, NOT radiography, therapy, rehabilitation Replantation: replantation guidelines, digital replantation, hand, thumb replantation, therapy, rehabilitation, hand replantation, outcome, arm replantation, arm reimplantation Shoulder: acromioplasty, open, acromion/SU/PP/PH/IN, therapy, rehabilitation, acromion, arthroplasty, outcome, shoulder, anterior instability, shoulder anterior instability, NOT surgery, NOT surgical, arthroscopic debridement, debridement, Bankart repair, capsular shift, joint instability surgery, distal clavicle resection, frozen shoulder, occupational therapy, adhesive capsulitis, physical therapy, Hoffer transfer, latissimus dorsi, teres major, rotator cuff, surgery, transfer, impingement, conservative, labral debridement, labrum, repair, motion, levator scapulae syndrome, levator scapulae, levator scapula syndrome, injury, rotator cuff tear, rotator cuff repair, small, rotator cuff injuries/RH/SU/TH, range of motion, goniometry, rotator cuff/SU, range of motion, articular, proximal biceps tenodesis, proximal biceps tenodesis, proximal biceps, biceps brachii muscles/SU, tenodesis, tenotomy, scapulothoracic dyskinesis, NOT athlete, SLAP repair, postoperative, superior labrum anterior posterior repair Spasticity: spasticity, arm, conservative, upper extremity, NOT lower extremity, superficialis, profundus, transfer, superficialis to profundus Tendinitis: tendinitis, flexor carpi radialis, FCR, flexor carpi, inflammation, release, tendonitis, surgery, flexor carpi ulnaris, therapy, rehabilitation, tenosynovitis, (lateral EVIDENCE-BASED PRACTICE AT IHTSC 36 epicondylitis OR tennis elbow), conservative, percutaneous, lateral epicondylectomy, epicondylectomy, lateral epicondylitis, tennis elbow, extensor carpi radialis, tenotomy, extensor carpi radialis longus, extensor carpi radialis brevis, medial epicondylitis, nonoperative, outcome, protocol, medial epicondylectomy, epicondylitis, distal biceps tendinitis, biceps tendonitis, distal, triceps tendonitis, triceps tendinitis Tenosynovitis: (flexor tenosynovitis OR trigger finger), conservative, tenosynovectomy, flexor tenosynovitis, (flexor tenosynovitis OR trigger thumb), trigger thumb, therapy, thumb, splint, flexor tenosynovectomy, dequervain tenosynovitis, dequervains, first dorsal compartment, NOT injection, tenosynovitis, de Quervain, release, wrist, extrinsic flexor tenosynovitis hand, arm muscle, extensor tenosynovectomy, intersection syndrome, proximal, distal, surgery, surgical Tendon Transfers: palmaris longus, abductor pollicis brevis, flexor digitorum superficialis, thumb, adductor, transfer, NOT hypoplasic, hand transfer, palsy, intrinsic, intrinsic palsy, claw, tendon transfer, bunnel, stiles, zancolli, lasso, metacarpophalangeal joint capsulodesis, metacarpal, hand, biceps, pectoralis major, elbow, latissimus dorsi, sternocleidomastoid, triceps, extensor digitorum communis, flexion transfer, extensor, extensor carpi radialis brevis, flexor digitorum profundus, extensor carpi radialis longus, flexor pollicis longus, extensor indicis proprius, extensor indicis, thumb, abductor pollicis brevis, tendon, abductor digiti quinti minimi, abductor digiti, huber, thumb opposition, opponensplasty, hoffer, shoulder, rotation Tenolysis: tenolysis, extensor, hand, tenolysis surgery, extensor tendon, tendon, adhesion, capsulectomy, flexor tenolysis, flexor tendon, frayed, pseudotendon TOS: thoracic outlet syndrome, therapy, NOT surgery EVIDENCE-BASED PRACTICE AT IHTSC 37 Triceps Repair: triceps repair, distal, distal triceps, therapy, rehabilitation, protocol, outcome, repair Vascular Disorders: digital sympathectomy, sympathectomy, sclerosis, Raynaud, digit, NOT drug, therapy, hemangioma, hand, therapy, conservative, upper extremity, rehabilitation, outcome Wounds: cellulitis, hand, therapy, NOT drug, upper extremity, rehabilitation Wrist Procedures: wrist, darrach, ulnar head resection, ulnar head osteotomy, hit procedure, Lowenstein, sauve-kapandji, outcome, pisiform excision, proximal row carpectomy, therapy, rehabilitation, radius lengthening, radial lengthening, radial, longitudinal, lengthening, occupational therapy, shortening, osteotomy, radial osteotomy, scapho lunate dissociation, lunate dissociation, scaphoid dissociation, rotary subluxation, scaphoid, scapholunate interosseous ligament, injury, ulnar shortening, osteotomy, outcome, therapy, rehabilitation, motion Misc- Toe to Thumb Transfer: toe, thumb, transfer, transplantation, toe transplantation, therapy, strength Misc- Distal Radio-Ulnar Instability: radioulnar instability, sling, radius AND ulna, instability, flexor carpi ulnaris, carpi ulnaris, distal EVIDENCE-BASED PRACTICE AT IHTSC 38 Appendix B Sample Template - - Arthritis: Outcomes: o McQuillan, T. J., Kenney, D., Crisco, J. J., Weiss, A.-P., Ladd, A. L. (2016). Weaker functional pinch strength is associated with early thumb carpometacarpal osteoarthritis. Clinical Orthopaedics and Related Research, 474(2), pp. 557-561 A 20% decrease in key pinch strength from the control subjects baseline was associated with a 10% increase in the OA diagnosis (p. 557) Key pinch was the most strongly associated with early CMC OA diagnosis, but there was also an effect on tip pinch and three-finger pinch Authors describe that a decrease in joint strength may appear before radiographic deterioration of the joint Recommended Reading: o Ryan, S., Lillie, K., Thwaits, C., Adams, J. (2013). What I want clinicians to know- experiences of people with arthritis. British Journal of Nursing, 22(14). Pain is such a prominent part of life with arthritis, patients value addressing pain relief strategies and options throughout therapy Patients want to be as independent as possible, and the focus group participants indicated a desire for adaptive equipment and strategies so they could feel more able to perform their ADLs Patients value inclusion in the treatment planning process, and want to be seen as partners in their health care Of note, participants with RA felt that their psychosocial needs were similar to a cancer survivor, as they have lasting deficits and chronic pain that hinders them in daily life and leads to depression and feeling inadequate  ...

... Running Head: CANCER CAREGIVER BURDEN Addressing Caregiver Burden: Program Development to Improve the Quality of Life of Caregivers of Cancer Survivors Aubriel J. Wooley May 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Katie Polo, DHS, OTR, CLT-LANA 1 CANCER CAREGIVER BURDEN 2 A Capstone Project Entitled Addressing Caregiver Burden: Program Development to Improve the Quality of Life of Caregivers of Cancer Survivors _____________________________________________________________________________ Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Aubriel J. Wooley Doctor of Occupational Therapy Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date CANCER CAREGIVER BURDEN 3 Abstract The purpose of this Doctoral Capstone Experience (DCE) was to create a one time, educational session, Caring for those who Care, for caregivers of cancer survivors at the Indianapolis chapter of Cancer Support Community (CSC). CSC staff completed a self-created needs assessment survey and caregivers completed the Caregiver Quality of Life-Cancer (CQOL-C) and Zarit Burden Interview (ZBI) to determine current barriers encountered by caregivers. The DCE student utilized thematic analysis to analyze needs assessment results, evidence based literature, and interactions with CSC staff and caregivers to develop and implement Caring for those who Care. Prior to beginning Caring for those who Care, participants completed the CQOL-C, ZBI, and a self-developed pre-survey. Five participants, three caregivers and two CSC interns, attended the session, which covered an educational and discussion portion for four topic areas: self-care, stress management, fatigue management, and anticipatory grief. Immediately following the session, participants completed a self-developed post-survey to determine knowledge gained. Two weeks following the session, participants completed the CQOL-C and ZBI to determine changes in quality of life (QoL) and burden. Despite inconclusive data on improvements in QoL and burden due to environmental barriers for two of the three caregivers in attendance, results indicated an improvement for 100% of participants in knowledge gained and improvements in implementation of strategies and skills for fatigue and stress management, self-care, and anticipatory grief. Overall, results indicate Caring for those who Care was successful and would be beneficial to continue to offer for caregivers of CSC. Keywords: caregivers, cancer, survivors, quality of life, burden, occupational therapy, community setting, Caregiver Quality of Life-Cancer, Zarit Burden Interview CANCER CAREGIVER BURDEN 4 Literature Review In 2015, there were approximately 3 million caregivers caring for individuals with cancer within the United States (National Alliance for Caregiving, 2015). An individual is considered a caregiver if he or she is providing care to one who needs assistance completing daily activities, due to disability or chronic illness (National Cancer Institute, 2014a). Although more individuals are being diagnosed with cancer each year, with 1.7 million new cases of cancer diagnosed in 2018 within the United States alone, the number of cancer-related deaths is decreasing and the number of survivors is increasing (National Cancer Institute, 2018). In 2016, there were approximately 15.5 million cancer survivors and that number is expected to grow to 20.3 million by 2026 within the United States (National Cancer Institute, 2018). An individual is considered a cancer survivor from diagnosis until the completion of life, with caregivers included as a cruicial element of survivorship (National Cancer Institute, 2014b). As the number of cancer survivors continues to grow, so will the need for caregivers, as well as the need to assess the impact of caregiving on these individuals (National Cancer Institute, 2016). Cancer Caregiver Demographics The demographics of caregiving have shifted from professional caregivers to family members as a result of a reduced duration of time spent at the hospital (Tan, Molassiotis, Lloyd Williams, & Yorke, 2018), with a staggering 88% of 111 cancer caregivers providing care for relatives (National Alliance for Caregiving, 2016). The average age of caregivers is approximately 53 years old, with 58% of caregivers being women (National Alliance for Caregiving, 2016). Cancer caregivers spend approximately 33 hours a week providing assistance to loved ones with Activities of Daily Living (ADLs), such as bathing, toileting, dressing, and hygiene, as well as asssitance with Instrumental Activities of Daily Living (IADLs), including CANCER CAREGIVER BURDEN 5 driving, financial management, medication management, and shopping (National Alliance for Caregiving, 2016). In addition to physical support, caregivers reported providing emotional, financial, spiritual, and social support throughout the duration of cancer treatment (Ahmad & Khan, 2018). Caregiver Burden Cancer caregivers are unique because their role of caregiving, although somewhat brief compared to caring for other individuals, is very intense, due to the large quantity of responsibilities and hours spent caring (Lapid et al., 2016, p.1400; National Alliance for Caregiving, 2016). Approximately 86% of 188 caregivers of individuals with a variety of cancer diagnoses reported their needs were unmet, highlighting a lack of information provided on their loved ones disease progression, difficulty balancing their loved ones needs with their own, as well as lack of emotional and psychological support (Lapid et al., 2016; Sklenarova et al., 2015). Many family caregivers begin their caregiving duties without training (Almutairi, Alodhayani, Alonazi, & Vinluan, 2017), as evidenced by 43% of cancer caregivers completing complicated medical tasks without prior instruction, such as administering medication, determining whether medicine is necessary, and changing bandages (National Alliance for Caregiving, 2016; Van Ryn et al., 2011). As a result of daily care responsibilities and lack of support and training, caregivers are experiencing caregiver burden, defined as physical, emotional, psychosocial, and financial burden (Tan et al., 2018). Pain, fatigue, weakness, sleep disturbance, anxiety, and depression were among the most commonly reported ailments related to caregiver burden (Tan et al., 2018). Chronic stress also burdens caregivers, initially negatively impacting their psychological health and overtime impacting their physical health (Ahmad & Khan, 2018). These burdens can lead to increased distress, followed by reduced mental health and quality of life, which is defined as an CANCER CAREGIVER BURDEN 6 individuals social, physical, and emotional health domains (Almutairi et al., 2017; Kai Ting Chua et al., 2016). A decreased quality of life for caregivers not only negatively affects the caregivers themselves, but also extends to the survivors quality of life and the healthcare system as a whole (Romito, Goldzweig, Cormio, Hagedoorn, & Andersen, 2013; Tan et al., 2018). If caregivers are able to provide ideal care, then their personal burden and strain on the healthcare system is reduced, which ultimately improves the survivors outcomes (Shin et al., 2018). Therefore, there is a dire need for education and counseling programs, as the burden associated with the role of primary caregiving for a cancer survivor is expected to increase for middle and older adults by 2030 (Almutairi et al., 2017). Role of Occupational Therapy Caregiving, or care of others, is defined as an IADL within the Occupational Therapy Practice Framework (OTPF) and is within the scope of practice for occupational therapy practitioners (American Occupational Therapy Association [AOTA], 2014). As previously mentioned, the literature suggests caregivers are struggling to meet their own needs, along with the needs of those they are caring for (Grimm & Schmid, 2018). The needs of caregivers are often overlooked and the survivors needs are put first (Almutairi et al., 2017; Tan et al., 2018). Therefore, there is a necessity for practitioners to develop tailored interventions to facilitate balance of personal and caregiving responsibilities (Grimm & Schmid, 2018). Due to their education and training, occupational therapy practitioners are situated to develop interventions that meet the comprehensive needs of caregivers (Grimm & Schmid, 2018, p. 1). There is increasing support for reimbursable interventions within the occupational therapy (OT) scope of practice, including education, training, and provision of strategies to encourage occupational performance and caregiver well-being (Piersol et al., 2017). Research suggests education and CANCER CAREGIVER BURDEN 7 support for caregivers should be integrated into cancer survivors discharge plans (Romito et al., 2013). Although these interventions are applicable in a variety of practice settings (Piersol et al., 2017), occupational therapists need to move beyond the acute phase of survivorship and begin addressing the long-term impacts of cancer within the community setting (Polo & Smith, 2017). The thoughts of Polo and Smith also applies to the needs of caregivers. Theoretical Background The Ecology of Human Performance (EHP) model can be used as a lens to better understand the role of OT in meeting the unmet needs of caregivers of cancer survivors and decreasing caregiver burden. The EHP focuses on the impact of ones environment on task performance (Cole & Tufano, 2008). Environment is defined as ones physical, social, cultural, and temporal context, and task is defined as preceding steps to occupations or roles (Cole & Tufano, 2008). Caregivers unique skill sets and characteristics are negatively impacted by the contextual factors associated with caregiving (Tan et al., 2018), which in turn negatively impacts their occupational performance and fulfillment of roles (Grimm & Schmid, 2018). A few of the contextual factors influencing caregiver burden include specific cancer diagnosis and duration of hospitalization of the cancer survivor, education provided on diagnosis presentation and prognosis, survivors estimation of burden on the caregiver, and the physical and mental health of both the caregiver and survivor (Ahmad & Khan, 2018; Shin et al., 2018; Tan et al., 2018). Social supports from family and friends, as well as financial resources, are also important contextual factors to consider (Maguire, Hanly, Hyland, & Sharp, 2018). There is a need for OTs to support caregivers with appropriate interventions due to the negative influences the context of caregiving has on caregivers ability to successfully perform their self care tasks and ultimately their meaningful occupations (Grimm & Schmid, 2018). CANCER CAREGIVER BURDEN 8 Therefore, the purpose of this project was to design and implement an occupation based program to improve the quality of life of caregivers caring for survivors in the community setting. Needs Assessment In order to design an effective program to improve quality of life for caregivers caring for survivors, a thorough needs assessment was conducted. Using the EHP model as a guide to determine contextual barriers impacting caregivers task performance (Cole & Tufano, 2008), caregivers at Cancer Support Community (CSC) were asked to complete two assessment tools, the Caregiver Quality of Life Index-Cancer (CQOL-C) questionnaire and the Zarit Burden Interview (ZBI). Tool & Survey Descriptions The CQOL-C, which can be referenced in Appendix A, was an appropriate and useful assessment tool for this needs assessment because it goes beyond general quality of life (QoL), and specifically applies to caregivers of individuals with cancer (Weitzner, Jacobsen, Wagner, Friedland, & Cox, 1999a). The CQOL-C is a 35 question assessment designed to measure the QoL of family caregivers of cancer survivors, generalizable to various types of cancer diagnoses (Weitzner et al., 1999a). The CQOL-C asks caregivers of cancer survivors to indicate how true each statement has been for them within the past week, ranging from not at all (0) to very much (4) (Weitzner et al., 1999b). In addition to excellent internal consistency and test-retest reliability, the CQOL-C exceeds validity and reliability psychometric criteria (Edwards & Ung, 2002, p.342; Weitzner et al., 1999a, p.62). The full form ZBI is one of the frequently used tools to assess caregiver burden and has been used in a variety of settings (ORourke & Tuokko, 2003, p. 121). The ZBI short form, which can be referenced in Appendix B, is a 12 question assessment of subjective burden, with CANCER CAREGIVER BURDEN 9 the goal of measuring the impact of the role of caregiving on the lives of caregivers (Bdard et al., 2001a). The ZBI asks caregivers to indicate how often they feel a certain way, ranging from never (0) to nearly always (4) (Bdard et al., 2001b). The shortened ZBI was an appropriate assessment tool and supplement to the CQOL-C for this needs assessment because it required less time to complete and does not reduce the reliability and validity of the original ZBI (Bdard, Molloy, Squire, Dubois, Lever, & O'Donnell, 2001; O'Rourke & Tuokko, 2003). Staff at CSC who work directly with caregivers were asked to identify barriers impacting task performance for caregivers utilizing a survey generated from themes from the literature, which can be found in Appendix C. The survey questions created for staff were developed through the lens of the EHP, with the goal of evaluating contextual factors influencing caregiver burden (Cole & Tufano, 2008). A survey was utilized because it is an appropriate method of gathering data in the community setting (Stein, Rice, & Cutler, 2013). Stein, Rice, and Cutler (2013) note survey research can be applied to multiple community health services, specifically designing preventative health, therapeutic, or educational programs within the community. This coincides with the purpose of this program, which was to design and implement an educational program in the community setting to improve the QOL of caregivers caring for cancer survivors. Generation of Themes Needs assessments were conducted and themes were generated until saturation was reached, or when no new categories or themes were generated (Corbin & Strauss, 2006). Themes from the staff and caregivers questionnaires were generated utilizing thematic analysis, the process of identifying, analyzing and reporting patterns within data (Braun & Clarke, 2006, p. 79). Thematic analysis is an adaptable, valuable form of analysis, which has been shown to generate a comprehensive and multifaceted interpretation of a set of information (Vaismoradi, CANCER CAREGIVER BURDEN 10 Turunen, & Bondas, 2013). In addition to thematic analysis, an analysis of CSCs strengths, weaknesses, opportunities, and threats (SWOT) was completed in regards to caregiver programming and resources, found in Appendix D. The SWOT analysis provided a better understanding of the opportunities to improve caregivers QOL within this community setting prior to constructing a program (Bonnel & Smith, 2018). Results The CQOL-C and ZBI were completed with six caregivers of survivors; however, due to contextual details surrounding one individuals experience with caregiving, this individuals responses were deemed inappropriate for the purpose of this program and were not included during thematic analysis. Five main themes emerged from the CQOL-C and ZBI, including increased stress and mental strain, less restful sleep, financial strain, fearing adverse effects of treatment and death on their loved one, and distress associated with watching their loved one deteriorate. The details of these results are listed below, as well as in Appendix E. Eighty percent of caregivers reported increased stress and worry associated with caregiving, ranging from quite a bit (3) to very much (4), and 100% of caregivers reported increased mental strain, with 60% indicating very much (4) increased mental strain. One individual emphasized that her own health was suffering because she tends to ignore her own needs. One hundred percent of caregivers reported less restful sleep, with scores ranging from (2) somewhat to (4) very much, and one individual shared she was feeling a level of exhaustion she never knew existed, physically and mentally. Another individual noted, A program covering how to have more energy would be extremely helpful. One hundred percent of caregivers reported financial strain, ranging from a little bit (1) to quite a bit (3), with 80% sharing they feel their economic futures are uncertain, ranging from quite a bit (3) to very much CANCER CAREGIVER BURDEN 11 (4). All of the individuals reported fearing the adverse effects of treatment, ranging from a little bit (1) to very much (4), and 100% of individuals noted they fear their loved one will pass away, with scores ranging form somewhat (2) to very much (4). One hundred percent of caregivers reported feeling distressed seeing their loved one deteriorate, with 80% of individuals rating this as very true (4). Nine staff members, including the program director and support group facilitators, completed the six-question survey. Four major themes emerged after completing the thematic analysis, including lack of self-care, increased fatigue, need for coping skills to address anticipatory grief, and increased anxiety and stress. Staff were asked what concerns or issues related to caregiving they have observed and could see as beneficial to include in a program to address caregivers needs. Approximately 67% of staff members mentioned lack of self-care and approximately 44% mentioned the need for stress and anxiety management as important. Approximately 33% reported increased fatigue as a key factor and approximately 22% noted the need for pre-grieving, or anticipatory grieving, in case of potential loss. These four themes align with the five themes generated from the CQOL-C and ZBI, as anticipatory grief encompasses the fear associated with treatment and death. In addition, 40% of the caregivers interviewed made additional comments highlighting the importance of self-care for caregivers. Comparison to Inpatient Setting The responsibilities and burden associated with caring for survivors varies depending on the survivors phase of cancer treatment (Given, Given, & Sherwood, 2012). This variation extends to the settings associated with each phase of treatment, with a variety of needs that occur not only during the time of diagnosis and treatment but years after (Kim, Kashy, Spillers, & Evans, 2010, pg. 581). The needs of survivors are not adequately being met in settings other CANCER CAREGIVER BURDEN 12 than acute care (Polo et al., 2018), let alone the needs of caregivers. Romito and colleagues (2013) note that similar to caregivers of cardiac or stroke patients, training and resources for caregivers of cancer survivors should be included in the survivors discharge plans. Findings suggest, although responsibilities of caregivers vary with each stage of cancer treatment (Given, Given, & Sherwood, 2012), studies examining caregivers needs have determined informational and psychological needs as the most freqeuntly reported concerns amongst caregivers, regardless of setting (Grimm, Zawacki, Mock, Krumm, & Frink, 2000, p. 121). Given this information, a needs assessment completed in the inpatient setting would look similar to a needs assessment completed the community setting because caregivers needs are not adequately being met in any OT setting. However, implementing a program for caregivers is most appropriate in the community setting because caregivers can better attend to their own needs as the survivors health stabilizes. Program Implementation Three main interventions were completed during this doctoral capstone experience. The primary intervention, implemented by the occupational therapy student, was a one time, discussion-based, educational class for caregivers of cancer survivors at CSC. Caring for those who Care was held on March 12th, 2019 and lasted approximately two hours. Caring for those who Care was advertised in CSCs monthly calendar, The Companion, and announced at various programs and support groups held at CSC throughout the month prior to the class. After review of the completed needs assessments, four discussion topics were chosen for the session, including self-care, stress management, fatigue management, and anticipatory grief. To begin the session, participants completed a brief introductory activity of sharing one self-care activity completed during the week prior in order to build participant rapport and CANCER CAREGIVER BURDEN 13 transition into the first topic. Each topic consisted of an educational portion, including definitions, factual evidence, and strategies and skills developed from needs assessment findings and evidence based research. Following the education portion, participants engaged in discussion based on three to four questions, developed from class content and evidence based literature findings per topic. The discussion portion concluded with the occupational therapy student encouraging participants to write down one or two strategies to implement in the coming weeks. Before and after the session, participants completed a six-question pre and post survey, developed utilizing class content, evidence-based literature, and needs assessment results, which can be found in Appendix F. These surveys served as formative assessments, by measuring knowledge gained by each participant during the session. In addition to these surveys, each participant completed the CQOL-C and ZBI, which served as summative assessments to assess caregiver burden and quality of life. Two weeks after the class, a one-on-one consultation was completed with each participant, which consisted of reassessing their ZBI and CQOL-C scores after implementation of strategies and skills learned, as well as discussion on additional concerns. The second intervention associated with the Caring for those who Care class consisted of the creation and distribution of an infographic, found in Appendix G. The infographic was created using class content, evidence-based literature, and utilized suggestions from the marketing director of CSC. The graphic contained the four discussion topics of self-care, stress management, fatigue management, and anticipatory grief, with key points bulleted underneath. In addition, CSCs contact information and a link to the third and final intervention, described below, were included. With permission from staff, the infographic was displayed at CSCs CANCER CAREGIVER BURDEN 14 central location and distributed to CSCs networking sites, including Franciscan Health Cancer Center, Eskenazi Health, Community Health Network, and Hendricks Regional Health. As mentioned above, the third and final intervention associated with this doctoral capstone was an online tool created for caregivers with community resources to facilitate caring for their loved ones. This tool was developed utilizing Google sheets, suggestions from CSC staff, and the magazine Cancer Guide. The tool is organized into separate pages by the various needs of cancer survivors and their caregivers, including but not limited to, basic living expenses, equipment/supplies expenses, childcare expenses, and medical care assistance. The contents of each page includes organizations titles, contact information with links to their websites, and mission statements. The goal for this tool is for it to be displayed on CSCs website to provide easier access to community resources for cancer survivors and their caregivers. Leadership and Implementation Leadership relies on effectiveness, emphasizing the skills of planning and communicating effectively, networking/ building relationships, and challenging, motivating, and inspiring others (Snodgrass, 2011). These effective leadership skills were essential for the implementation of Caring for those who Care, as well as the creation and distribution of the infographic and online tool. Prior to presenting the Caring for those who Care class, planning effectively was required to ensure all topics were covered thoroughly and concisely. Frequently inquiring if participants had questions throughout the implementation of the class and summarizing key points after each topic ensured effective communication throughout the session. Effective communication, specifically considering the components of health literacy and ease of use, were CANCER CAREGIVER BURDEN 15 also key components in designing both the infographic and online tool. Networking and building relationships with CSC staff and participants was critical in the recruitment of participants for the class, distribution of the infographic, and the gathering of information for the creation of the online caregiver tool. Networking and building relationships required multiple months of rapport building and attending functions held by CSC. Challenging and motivating caregivers to attend the class and to implement one to two strategies from each topic was intended to inspire these individuals to complete self-compassionate care, putting their needs first. Finally, initiation, communication, and self-directed learning have facilitated leadership growth throughout this doctoral experience. Initiating communication with staff and participants and taking initiative to attend programs, groups, and events fueled ideas for Caring for those who Cares program design and implementation, as well as the need for an online caregiver tool. Due to the nature of the community setting and the multitude of responsibilities of the occupational therapy students site mentor, it was particularly important to be self-directed and take initiative during both the program development and implementation phases. Staff Development and Implementation Staff development was encouraged throughout the implementation phase. During initial meetings with the occupational therapy students site mentor and program facilitator, OTs scope of practice was defined and applied to the community setting. The role of occupational therapy with survivors and their caregivers within the community setting continued to be highlighted and clarified throughout the implementation phase and during bimonthly meetings with CSC fulltime staff, including program facilitators, interns, and participants. During the Caring for those who Care session, two interns from other health professions were educated on the course content, specifically the role of occupational therapy within the population of caregivers of CANCER CAREGIVER BURDEN 16 survivors. Finally, staff development was encouraged while visiting CSC networking sites including Community Health Network, Eskenazi Health, and Franciscan Health. When the potential role of OT in survivorship care was described, one-on-one consultation appointments were marketed for patients to receive OT consultations through CSC. Program Outcomes Formative and summative assessments were utilized to measure knowledge gained and changes in quality of life and burden for each participant. Results of the formative, six-question and 12 point, pre and post surveys demonstrated an increase in knowledge gained of the Caring for those who Care session. This was evidenced by an average of a four-point improvement, from pre to post survey scores, across a total of five participants. Three caregivers and two CSC interns attended the session. It is important to note the range of improvement among scores was from three to five points, with 100% of participants gaining knowledge. On average, participants demonstrated the most significant improvement in knowledge of tips to improve self-care and energy conservation strategies. Participants summative, or CQOL-C and ZBI, scores were reassessed two weeks following the Caring for those who Care session to allow adequate time for strategy and skill implementation. Results varied due to two participants experiencing a significant decline in their survivors health the week before the reassessment was completed. Despite total numerical scores indicating an increase in burden and decrease in quality of life for two, or 67%, of caregivers, upon further analysis of the scores, 100% of caregivers reported improvements in maintaining outside interests, decreased stress/worry, decreased mental strain, less fear about adverse effects of treatment on their loved one, improved sleep quality, increase in time spent on self-care activities, and improved outlook toward the future. This is evidenced by improved CANCER CAREGIVER BURDEN 17 CQOL-C scores on questions 2, 5, 10, 11, 15, as well as ZBI scores on questions 1, 2, and 5. These results can be viewed in more detail in Appendix H, Figures 1H and 2H. The caregiver whose scores indicated increased quality of life and decreased burden showed an improvement of 16 points, out of 140 total points on the CQOL-C, and two points, out of 48 total points, on the ZBI. Her most notable areas of improvement included ability to spend time on her outside interests, decreased mental strain, and a more positive outlook for the future. The participant shared, I did not realize the importance of making time for myself and how much I was not doing that until the caregiver session. Although, as previously mentioned, two participants results varied, both individuals reported the session was extremely helpful and inquired about CSC holding the session again, as well as additional caregiver support groups. Quality Improvement Quality improvement is critical for organizations to ensure client centered, quality care for individuals utilizing their services (LoBiondo-Wood, Haber, & Titler, 2018). The first steps to initiate quality improvement of a program are assessment and analysis, completed to better understand current performance and guide changes (LoBiondo-Wood, Haber, & Titler, 2018). Successful methods of gathering this information are conducting surveys and interviews (LoBiondo-Wood, Haber, & Titler, 2018). Immediately following Caring for those who Care and two weeks following the session during reassessments of the CQOL-C and ZBI, participants were interviewed and asked to share elements of the session they enjoyed and elements they would improve upon. In the future, according to quality improvement results, CSC can improve this session by breaking up each topic into individual sessions to allow for more in-depth discussion and include strategies to cope with grieving when a loved one passes away suddenly. CANCER CAREGIVER BURDEN 18 Quality improvement, as it relates to the ongoing implementation of Caring for those who Care at CSC, will be ensured through the continued use of formative and summative assessments; the pre and post surveys, CQOL-C, and ZBI as objective measures will be used to guide program changes. In addition, the interview questions immediately following the session and two weeks after the session will continue to be utilized to provide subjective measures to guide program changes. Meeting the Societal Need The purpose of this doctoral experience was to meet the unmet needs of caregivers at CSC to ultimately improve their own quality of life and decrease the burden associated with caregiving. As previously mentioned, approximately 86% of 188 caregivers of individuals with a variety of cancer diagnoses reported their needs were unmet (Lapid et al., 2016; Sklenarova et al., 2015). As a result of these unmet needs, caregivers are experiencing caregiver burden and decreased quality of life (Almutairi et al., 2017; Tan et al., 2018). In order to meet the needs of caregivers at CSC, the OT student implemented Caring for those who Care, tailored specifically to meet caregivers at CSCs needs following the results of the needs assessment and evidence-based literature. This directly met the needs of caregivers by addressing their specified concerns in the areas of self-care, stress management, fatigue management, and anticipatory grief. Participants were not only provided with skills and strategies for each topic, but they were also contacted two weeks following the provision of these skills and strategies to address concerns and questions following implementation. Although only 33% of caregivers who attended the session reported improved QoL and decreased caregiver burden, as evidenced by ZBI and CQOL-C scores, further analysis of the scores demonstrated an improvement for 100% of participants in topic areas addressed during CANCER CAREGIVER BURDEN 19 the Caring for those who Care session. One participant even shared, Ive completely shifted my focus to my own self-care. In addition to the design and implementation of Caring for those who Care, the OT students goal for the creation and distribution of the infographic and online tool was to improve QoL and decrease burden beyond CSC to reach more caregivers in the Indianapolis community. Sustainability To ensure sustainability of Caring for those who Care to continue meeting the needs of caregivers in the greater Indianapolis area, the DCE student provided CSC with 2 protocol binders for the session. These binders contained the infographic, educational content, assessments, and a detailed protocol of the intended session format, goals, needed supplies, and the students contact information for future inquiries. The contents of the protocol binders were also made available to the students site mentor on Google Drive to more easily disseminate to facilitators of caregiver support groups. A support group facilitator at CSC has agreed to sustain the resources and programming to continue meeting the needs of caregivers in the greater Indianapolis area. To ensure sustainability of the online tool, the DCE student utilized Google Sheets, granting access to the resource for anyone with the link and Internet access. The DCE student provided the site mentor with editing abilities to add and remove resources as needed. Communication Communication with CSC staff, participants, and mentors of the OT student was a key component of the success of this DCE project. Both written and oral communications were utilized to recruit participants for both the needs assessment and implementation stages. In addition, oral communication during staff meetings promoted advocacy for Caring for those CANCER CAREGIVER BURDEN 20 who Care and the OT profession as whole, resulting in an increased understanding of OTs role with caregivers of survivors in the community setting. This was evidenced by referrals to Caring for those who Care from CSC staff and interns of other health professions. In addition, therapeutic use of self through non-verbal communication was crucial during the discussion portion of the session to demonstrate empathy and active listening. The OT student improved in both oral and written communications in the areas of professional terminology, health literacy, and conflict resolution throughout this doctoral experience. This was demonstrated by email communication with site and faculty mentors, use of terminology and formatting on the infographic, and clarification of the purpose of the DCE and OTs scope of practice with CSC interns. These improvements in communication skills ensured the successful completion of the OT students three primary goals prior to beginning the capstone experience, including identifying OTs role in the community setting with the caregivers of survivors, implementing a health and wellness session, and developing an evidenced based caregiver resource. Leadership and Advocacy As previously mentioned, in addition to attending staff meetings to advocate for OT, the OT student educated CSC participants and interns from other health professions throughout the doctoral experience on OTs scope of practice. This included OTs role within the community setting and with the population of caregivers of cancer survivors. The OT student also had the opportunity to present to CSCs board of directors about Caring for those who Care and answer questions about OTs role in the community setting. According to Braveman, leadership is a process of change whereby we hope to impact others in some sustainable manner and have lasting impact on the function of a department or organization (2016, p.6). Self-directed learning has been the primary factor in the OT students CANCER CAREGIVER BURDEN 21 leadership development. Self-directed learning influenced efficient and effective communication and planning, goal setting, as well as networking and building relationships to design and implement a sustainable session, Caring for those who Care, as well as the design and distribution of the infographic and online tool to create lasting resources for caregivers at CSC. Conclusion This DCE demonstrates that the Caring for those who Care session is a promising program for OTs who wish to educate caregivers of cancer survivors in the community setting. Community based educational programs such as Caring for those who Care, which offer strategies and skills for caregivers most commonly reported burdens, are a valuable contribution to the increasing population of caregivers of survivors. Research in this area will serve to gain further insight on this critical issue for caregivers. CANCER CAREGIVER BURDEN 22 References Ahmad, T., & Khan, M. I. (2018). Caregiver distress: A comparative study. Indian Journal of Health & Wellbeing, 9(1). Almutairi, K. M., Alodhayani, A. A., Alonazi, W. B., & Vinluan, J. M. (2017). Assessment of health-related quality of life among caregivers of patients with cancer diagnosis: a cross-sectional study in Saudi Arabia. Journal of religion and health, 56(1), 226-237. American Occupational Therapy Association. (2014). 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Jacobs & G. L. McCormack (Eds.), The occupational therapy manager (pp. 265279). Bethesda, MD: AOTA Press. CANCER CAREGIVER BURDEN 26 Stein, F., Rice, M. S., & Cutler, S. K. (2013). Clinical research in occupational therapy. (5th ed. pp. 307-406). Clifton Park, NJ: DELMAR Cengage Learning Tan, J. Y., Molassiotis, A., Lloyd Williams, M., & Yorke, J. (2018). Burden, emotional distress and quality of life among informal caregivers of lung cancer patients: An exploratory study. European journal of cancer care, 27(1), e12691. Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing & health sciences, 15(3), 398-405 Van Ryn, M., Sanders, S., Kahn, K., Van Houtven, C., Griffin, J. M., Martin, M., ... & Rowland, J. (2011). Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue?. Psycho-Oncology, 20(1), 44-52. Weitzner, M. A., Jacobsen, P. B., Wagner, H., Friedland, J., & Cox, C. (1999a). The Caregiver Quality of Life IndexCancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Quality of Life Research, 8(1-2), 55-63. Weitzner, M. A., Jacobsen, P. B., Wagner, H., Friedland, J., & Cox, C. (1999b). The Caregiver Quality of Life Index-Cancer (CQOLC) Scale [Measurement instrument]. Retrieved from http://www.midss.org/content/caregiver-quality-life-index-cancer-cqolc-scale CANCER CAREGIVER BURDEN 27 Appendix A Caregiver Quality of Life Index- Cancer Below is a list of statements that other people caring for loved ones with cancer have said are important. By circling one number per line, please indicate how true each statement has been for you during the past 7 days. 0 1 4 = = = Not at all A little bit Very much 2 3 = = Somewhat Quite a bit During the past 7 days: 1. It bothers me that my daily routine is altered. 0 1 2 3 4 2. My sleep is less restful. 0 1 2 3 4 3. My daily life is imposed upon. 0 1 2 3 4 4. I am satisfied with my sex life. 0 1 2 3 4 5. It is a challenge to maintain my outside interests. 0 1 2 3 4 6. I am under a financial strain. 0 1 2 3 4 7. I am concerned about our insurance coverage. 0 1 2 3 4 8. My economic future is uncertain. 0 1 2 3 4 9. I fear my loved one will die. 0 1 2 3 4 10. I have more of a positive outlook on life since my loved one's illness. 0 1 2 3 4 11. My level of stress and worries has increased. 0 1 2 3 4 12. My sense of spirituality has increased. 0 1 2 3 4 13. It bothers me, limiting my focus to day-to-day. 0 1 2 3 4 14. I feel sad. 0 1 2 3 4 15. I feel under increased mental strain. 0 1 2 3 4 16. I get support from my friends and neighbors. 0 1 2 3 4 17. I feel guilty. 0 1 2 3 4 18. I feel frustrated. 0 1 2 3 4 CANCER CAREGIVER BURDEN 0 1 4 = = = Not at all A little bit Very much 28 2 3 = = Somewhat Quite a bit 19. I feel nervous. 0 1 2 3 4 20. I worry about the impact my loved one's illness has had on my children or other family members. 0 1 2 3 4 I have difficulty dealing with my loved one's changing eating habits. 0 1 2 3 4 I have developed a closer relationship with my loved one. 0 1 2 3 4 I feel adequately informed about my loved one's illness. 0 1 2 3 4 It bothers me that I need to be available to chauffeur my loved one to appointments. 0 1 2 3 4 I fear the adverse effects of treatment on my loved one. 0 1 2 3 4 The responsibility I have for my loved one's care at home is overwhelming. 0 1 2 3 4 I am glad that my focus is on getting my loved one well. 0 1 2 3 4 28. Family communication has increased. 0 1 2 3 4 29. It bothers me that my priorities have changed. 0 1 2 3 4 30. The need to protect my loved one bothers me. 0 1 2 3 4 31. It upsets me to see my loved one deteriorate. 0 1 2 3 4 32. The need to manage my loved one's pain is overwhelming. 0 1 2 3 4 33. I am discouraged about the future. 0 1 2 3 4 34. I am satisfied with the support I get from my family. 0 1 2 3 4 It bothers me that other family members have not shown interest in taking care of my loved one. 0 1 2 3 4 21. 22. 23. 24. 25. 26. 27. 35. CANCER CAREGIVER BURDEN 29 Appendix B Zarit Burden Interview ZARIT BURDEN INTERVIEW INSTRUCTIONS: The following is a list of statements, which reflect how people sometimes feel when taking care of another person. After each statement, indicate how often you feel that way; never, rarely, sometimes, quite frequently, or nearly always. There are no right or wrong answers. Never Rarely Sometimes Quite Frequently Nearly Always 1) Do you feel that because of the time you spend with your relative that you dont have enough time for yourself? 0 1 2 3 4 2) Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work? 0 1 2 3 4 3) Do you feel angry when you are around the relative? 0 1 2 3 4 4) Do you feel that your relative currently affects your relationships with other family members or friends in a negative way? 0 1 2 3 4 5) Do you feel strained when you are around your relative? 0 1 2 3 4 6) Do you feel that your health has suffered because of your involvement with your relative? 0 1 2 3 4 7) Do you feel that you dont have as much privacy as you would like because of your relative? 0 1 2 3 4 8) Do you feel that your social life has suffered because you are caring for your relative? 0 1 2 3 4 9) Do you feel that you have lost control of your life since your relatives illness? 0 1 2 3 4 10) Do you feel uncertain about what to do about your relative? 0 1 2 3 4 11) Do you feel you should be doing more for your relative? 0 1 2 3 4 12) Do you feel you could do a better 0 1 2 job in caring for your relative? ZBI Steven H. Zarit and Judy M. Zarit, 1980-2008. All rights reserved. 3 4 CANCER CAREGIVER BURDEN 30 Appendix C Caregiver Burden Program Needs Assessment Aubriel Wooley, OTS (Occupational Therapy Intern) The Cancer Support Community defines cancer caregivers as family members, spouses, partners and friends who take on a caregiving role and have a unique relationship to cancer (CSC, 2016). 1. When working with caregivers of individuals with cancer, have any of these individuals reported concerns or issues related to caregiving? 2. Similarly, when conversing with other staff members, have they recounted issues or concerns reported or observed by caregivers related to caregiving? 3. If you answered yes to question (1) or (2), what are some common themes or topics you have noted? 4. From these themes, which of these do you think would be beneficial to include in a program designed to improve the quality of life and overall wellness of caregivers of individuals with cancer? 5. Have any of the sites CSC networks with reported caregiver concerns different from those you have already mentioned? If so, what are they? 6. Do you have any additional suggestions for either the formation/delivery of the needs assessment or the creation of the program itself? CANCER CAREGIVER BURDEN 31 Appendix D SWOT Analysis Strengths Weaknesses Opportunities Threats Caregiver support group (Friends & Family) currently available Caregivers encouraged to attend programs with survivors CSC has many network connections to engage caregivers and promote programs and support groups Ample space and supplies to host programs/groups CSC is respected throughout community and has a good reputation Lack of programs designed specifically to meet caregivers needs Minimal caregiver attendance at groups and programs Minimal resources/handouts specifically for caregivers Improve caregivers quality of life through tailored programs Meet caregivers unmet needs with one on one consultations Educate staff on caregivers reported needs Provide outline/guide for staff to continue program Geographical location many programs/groups only held at West Indianapolis location Continuation of program after DCE concludes CANCER CAREGIVER BURDEN 32 Appendix E Caregiver Needs Assessment Results Topic Stress/Worry associated with Caregiving Increased Mental Strain Less Restful Sleep Financial Strain Uncertainty about Economic Future Fear Adverse Effects of Treatment on Loved One Fear Loved One will Pass Away Distress Seeing Loved one Deteriorate % of Caregivers Reported 80% 100% 100% 100% 80% 100% Ranges of Intensity Quite a Bit (3) Very Much (4) Somewhat (2) Very Much (4) Somewhat (2) Very Much (4) A Little Bit (1) Quite a Bit (3) Quite a Bit (3) Very Much (4) A Little Bit (1) Very Much (4) 100% 100% Somewhat (2) Very Much (4) Quite a Bit (3) Very Much (4) CANCER CAREGIVER BURDEN 33 Appendix F Pre/Post Survey Questions 1. True or False: Fatigue encompasses both physical and mental components. 2. True or False: Men and women typically experience anticipatory grief similarly. 3. True or False: Anticipatory grief can help reduce the complexity of grief after losing a loved one. 4. True or False: When provided with stress management tips, caregivers no longer neglect their own self-care. 5. What are 3 tips for improving your self-care? (1) (2) (3) 6. The 5 main strategies for conserving energy during everyday tasks include: (1) (2) (3) (4) (5) CANCER CAREGIVER BURDEN 34 Appendix G Infographic CANCER CAREGIVER BURDEN 35 Appendix H Results of Pre & Post Session Scores Table 1H Zarit Burden Interview Results Do you feel Session Scores Never Rarely (0) (1) Sometimes Quite Nearly Frequently Always (3) (4) 67% -- (1) because of time spent with relative you dont have enough time for yourself? (2) stressed between caring for relative and meeting other responsibilities? Pre -- -- (2) 33% Post -- 33% 67% -- -- Pre 33% -- 33% 33% -- Post -- 67% 33% -- -- (3) angry when you are around your relative? Pre 67% 33% -- -- -- Post Pre 33% 33% 67% -- -- -- -- 67% -- -- Post 33% -- 33% -- 33% Pre 33% -- 67% -- -- Post (6) your health has suffered Pre because of your Post involvement with your relative? (7) you dont have as much Pre privacy as you would like because of your relative? Post 33% 67% -- -- -- -- -- 67% 33% -- -- -- 67% 33% -- -- -- 100% -- -- 33% 33% 33% -- -- (8) your social life has suffered because you are caring for your relative? (9) you have lost control of your life since your relatives illness? (10) uncertain about what to do about your relative? Pre -- 33% 33% -- 33% Post Pre -- --- 67% 67% -- -- 33% 33% Post -- -- 33% 67% -- Pre 33% -- 33% 33% -- Post -- -- 67% 33% -- (4) your relative affects your relationships with other family members negatively? (5) strained when you are around your relative? -- CANCER CAREGIVER BURDEN (11) you should be doing more for your relative? Pre Post (12) you could be doing a Pre better job in caring for your Post relative? 36 33% -- 67% -- -- 33% 33% 33% 33% 33% 67% 33% -- -- -- -- -- -- -- 33% CANCER CAREGIVER BURDEN 37 Table 2H CQOL-C Results Session Scores (2) 67% Quite a bit (3) -- Very Much (4) -- -- 33% 33% -- 33% 33% -- 33% -- Post 67% 33% -- -- -- (3) My daily life is imposed upon Pre -- 100% -- -- -- Post -- 67% -- -- 33% (4) I am satisfied with my sex life Pre -- 33% 67% -- -- Post -- 67% -- -- 33% (5) It is a challenge to Pre maintain my outside interests Post (6) I am under a financial Pre strain Post --33% 33% 33% -- -67% 67% ---- 67% --- 33% 33% 33% -- -- (7) I am concerned about our insurance coverage Pre 33% 67% -- -- -- Post 67% -- 33% -- -- (8) My economic future is uncertain Pre 67% 33% -- -- -- Post 67% -- -- 33% -- (9) I fear my loved one will die Pre 33% -- -- -- 67% Post -- 33% -- -- 67% (10) I have more of a positive outlook on life since my loved ones illness Pre -- -- 100% -- -- Post 33% 67% -- -- -- (11) My level of stress and worries has increased Pre -- -- -- 33% 67% Post -- -- 33% 67% -- (1) It bothers me that my daily routine is altered (2) My sleep is less restful A little bit Somewhat Pre Not at all (0) -- (1) 33% Post 33% Pre CANCER CAREGIVER BURDEN 38 -- (3) 67% Very Much (4) -- -- -- 33% 67% -- -- Pre -- 33% 33% 33% -- Post -- 33% 67% -- -- Pre -- -- 67% 33% -- Post -- 33% -- -- 67% Pre Post Pre ---- -67% 67% 67% 33% 33% 33% --- ---- Post -- 67% 33% -- -- (17) I feel guilty Pre Post 100% 100% --- --- --- --- (18) I feel frustrated Pre -- 33% -- 67% -- Post -- 33% -- 33% 33% Pre 33% 33% -- 33% -- Post 67% -- 33% -- -- Pre -- 33% -- 67% -- Post -- -- -- 67% 33% Pre -- -- -- 33% 67% Post -- -- -- 33% 67% Pre -- 33% 33% 33% -- Post 33% -- 33% 33% -- Pre -- -- -- 67% 33% Post -- -- -- 67% 33% (12) My sense of spiritualty has increased (13) It bothers me, limiting my focus to day-to-day (14) I feel sad (15) I feel under increased mental strain (16) I get support from my friends and neighbors (19) I feel nervous (20) I worry about the impact my loved ones illness has had on my children or other family members (21) I have difficulty dealing with my loved ones changing eating habits (22) I have developed a closer relationship with my loved one (23) I feel adequately informed about my loved ones illness Not at all (0) Pre A little bit (1) 33% Post Somewhat Quite a bit (2) Session Scores CANCER CAREGIVER BURDEN 39 Not at all (0) (24) It bothers me that I need Pre to be available to chauffeur my loved one to Post appointments (25) I fear the adverse effects Pre of treatment on my loved one Post A little bit (1) 33% -- Very Much (4) -- (2) 67% -- 33% 33% -- -- 33% -- 33% -- 33% 33% -- 67% 33% -- -- (26) The responsibility I have for my loved ones care at home is overwhelming Pre -- 33% 67% -- -- Post -- 33% 33% -- 33% (27) I am glad that my focus is on getting my loved one well (28) Family communication has increased Pre -- 33% 33% -- 33% Post -- -- -- 100% -- Pre -- 33% 67% -- -- Post -- 33% 33% 33% -- (29) It bothers me that my priorities have changed Pre -- 33% 33% 33% -- Post Pre Post ---- 33% 33% -- 33% -33% 33% 67% 33% --33% (31) It upsets me to see my loved on deteriorate Pre -- -- -- 33% 67% Post -- -- -- -- 100% (32) The need to manage my loved ones pain is overwhelming (33) I am discouraged about the future Pre -- -- -- 33% 67% Post -- 33% -- 33% 33% Pre -- 33% 33% -- 33% Post Pre 33% -- 67% -- -33% -33% -33% Post 33% -- -- 67% -- Pre -- -- -- 33% 67% Post -- -- -- 67% 33% (30) The need to protect my loved one bothers me (34) I am satisfied with the support I get from my family (35) It bothers me that other family members have not shown interest in taking care of my loved one Somewhat Quite a bit (3) Session Scores CANCER CAREGIVER BURDEN 40  ...

... Title: INSIGHT INTO THE OCCUPATIONAL LIVES OF ADULTS WITH BORDERLINE PERSONALITY DISORDER: A GROUNDED THEORY APPROACH Emily Mokol Karolina Szymaszek Kyra-Jo Gaerke Trevor Manspeaker December 2018 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Sally Wasmuth, PhD, OTR Running Head: OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER A Research Project Entitled Title: INSIGHT INTO THE OCCUPATIONAL LIVES OF ADULTS WITH BORDERLINE PERSONALITY DISORDER: A GROUNDED THEORY APPROACH Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Emily Mokol Karolina Szymaszek Kyra-Jo Gaerke Trevor Manspeaker Approved by: Sally Wasmuth, PhD, OTR (1st Reader) Beth Ann Walker, PhD, OTR (2nd Reader) Date 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 OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER UNIVERSITY OF INDIANAPOLIS SCHOOL OF OCCUPATIONAL THERAPY INSIGHT INTO THE OCCUPATIONAL LIVES OF ADULTS WITH BORDERLINE PERSONALITY DISORDER: A GROUNDED THEORY APPROACH By: Emily Mokol Karolina Szymaszek Kyra-Jo Gaerke Trevor Manspeaker A Research Paper submitted to Sally Wasmuth, Ph.D. in partial fulfillment of OTD-656 2 OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 3 Abstract Borderline personality disorder (BPD) is characterized by intense emotions, self-harm, low or unstable self-image, and risky behaviors, among other symptoms (American Psychiatric Association, 2013). The purpose of this study was to explore and better understand, through grounded theory analysis, the occupational lives of people with BPD to identify how occupational therapy (OT) may improve occupational lives for this population. There is limited research that specifically focuses on the impact of BPD on occupational participation, which is important for informing OT treatment planning. This study uses a grounded theory design with existing data from a larger study looking at metacognition and function in people with BPD. Eighteen participants were recruited via convenience sampling from a Veteran Affairs Hospital inpatient/outpatient clinic in an urban midwestern area. Data were collected with the Indiana Psychiatric Illness Interview (IPII), a semi-structured interview designed to elicit illness personal narratives (Lysaker & Lysaker, 2002). Eighteen IPII transcripts were analyzed using the grounded theory steps including initial coding, focused coding, axial coding, and theoretical coding (Charmaz, 2014). Findings illustrated a bidirectional interaction between the main themes of occupation and influencing environment. Participants environments contributed to their chosen occupations, which in turn continued to influence their environments. A bidirectional interaction was also evident between the themes of occupation and internal experiences. Internal experiences contributed to the types of occupations participants chose feelings of shame and low self-worth, for example, contributed to participation in relationships that reinforced these feelings. Data in this study illustrated a one way interaction between the themes of environment and internal experience. Environmental contexts impacted participants internal experiences; however, while internal experiences impacted occupational choices which then contributed to shaping participants environments, internal experiences did not directly shape the environments OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 4 of participants. This research highlights how occupational participation can powerfully impact lives of people with BPD. Data illustrated that occupations affected both environmental contexts and internal experiences. Therefore, occupation may be a powerful mechanism of change that affects internal experience and environments. Occupational therapists can build on the findings of this study by helping clients intentionally use occupation to change their experiences related to BPD, including problematic self-image, self-harm, and risky or disaffirming environments. OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 5 Introduction Borderline personality disorder (BPD) impacts people's feelings toward themselves and their relationships with others (American Psychiatric Association, 2013). The Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5) states that BPD affects a persons self-esteem, self-image, and personal relationships, and can begin early in life and continue to manifest over time (American Psychiatric Association, 2013). According to the National Alliance on Mental Illness (2017), major symptoms associated with BPD include fear of abandonment, unstable relationships, suicidal thoughts and behavior, impulsive behaviors, and self-image issues. Rates of self-harm and suicide among people with BPD are alarming. For instance, Matusiewicz and colleagues (2014) found that self-harm and suicidal behavior occurred among 50% to 80% of people diagnosed with BPD. These disquieting numbers demonstrate the negative effects and the serious problem that BPD can have, illustrating a need for better understanding of how these individuals lives unfold and what factors may contribute to troubling experiences such as self-harm. The purpose of this study was to explore, through a qualitative, grounded theory analysis, the occupational lives of people with BPD with the aim of identifying potential ways in which occupational therapy could improve occupational lives within this population. In the context of occupational therapy, occupations have been defined as: The things that people do that occupy their time and attention; meaningful, purposeful activity; the personal activities that individuals choose or need to engage in and the ways in which each individual actually experiences them (Boyt Schell, Gillen, & Scaffa, 2014a, p. 1237). Our study may reveal ways in which occupations are compromised by BPD, or ways in which aspects of BPD become occupations for OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 6 individuals. Literature Review History of Borderline Personality Disorder The term borderline was originally used to describe a person with schizophrenia who was near experiencing psychosis (e.g. on the border of being psychotic) (Gunderson, 2009). In the 1970s, BPD was distinguished as its own diagnosis and listed in the DSM-III. However, according to Gunderson (2009), the validity of the diagnosis was questioned due to how similar it was to other mental health illnesses such as depression and schizophrenia. In response, numerous studies were published in the 1980s that began to distinguish BPD from other mental health disorders (Gunderson, 2009). Persons with BPD and schizophrenia can have similarities in how the disorders present, including hallucinations, paranoia, and childhood trauma and emotional abuse (Kingdon, 2010). The disorders may look similar in presentation, but Kingdon (2010) found that people with schizophrenia experience more frequent hallucinations and people with BPD often were subject to more childhood trauma. Both BPD and schizophrenia can affect a persons sense of self and increase dissociative and emotionally withdrawn actions, but these symptoms are often more pronounced in people with schizophrenia (Reitman, 2013). Some researchers have found that people with schizophrenia tend to have more disturbances with their sense of self than people with BPD and are often more likely to demonstrate an increase in dissociative and emotionally withdrawn actions (Reitman, 2013). Schizophrenia hallucinations are almost always traumatizing to the point of extreme emotional pain and an agonizing internal experience, whereas BPD hallucinations are typically not as intrusive or frequent (Reitman, 2013). Some researchers suggest that the internal experience of people with BPD are typically not quite as negative as those with schizophrenia. A person with BPD may exaggerate their OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 7 feelings or have an outburst or shut down and withdraw as someone with schizophrenia would. In both disorders, the emotional experiences can lead to a lack of motivation and emotional regulation (Reitan, 2013). Signs and Symptoms As the name suggests, borderline personality disorder entails personality disturbances such as paranoid or narcissistic thoughts and actions. Other symptoms include anger outbursts, manipulation, and anxiety (Stone, 2016). A qualitative study by Pearse and colleagues (2014) examined psychotic symptoms of BPD. Twenty-four of the 30 participants reported experiencing psychotic symptoms at some point in their lifetimes, 18 of which were unrelated to other comorbid disorders. Of these 18, auditory hallucinations were the most common, experienced by 15 participants. Visual hallucinations, delusions, tactile hallucinations, and olfactory hallucinations were also reported but less common. Regarding auditory hallucinations, most voices were reportedly negative and experienced as an internal struggle (Pearse et al., 2014). As previously mentioned, those with BPD are also 40 to 50 times more likely to attempt suicide than the general population (Stone, 2016). In addition, self-harm is commonly seen among patients with BPD (Rossouw & Fonagy, 2012; Stone, 2016). In the DSM-5, there are nine criteria for BPD, and a person must meet five of them in order to be diagnosed. The criteria include: 1. Frantic efforts to avoid real or imaginative abandonment 2. A pattern of unstable or intense interpersonal relationships that fluctuate between extremes of idealization and devaluation 3. Identity disturbance: persistently unstable self-image or sense of self 4. Impulsivity in at least 2 areas that are potentially self-damaging OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 5. Recurrent suicidal behavior, gestures, threats, or self-mutilating behavior 6. Affective instability due to a marked reactivity of mood 7. Chronic feeling of emptiness 8. Inappropriate, intense anger, and inability to control it 9. Short, stress related paranoid ideation or severe dissociative symptoms (American 8 Psychiatric Association, 2013, p.663) Most studies have found that by the time a person is in their thirties, the symptoms of BPD have decreased with or without intervention. However, longitudinal studies of people with BPD are rare; comparative intervention studies at a given point in time are much more prevalent in the literature (Stone, 2016). Comorbidity Borderline personality disorder commonly co-occurs with other disorders (Kaess et at. 2012). Rates of BPD co-occurring with substance use disorder (SUD) are estimated to be as high as 65% (Pennay et al., 2011). Borderline personality disorder is most commonly found to have comorbidity with Axis I disorders, including mood disorders, substance use disorders, adjustment disorders, dissociative disorders, eating disorders, and other behavioral and emotional disorders than develop in childhood and adolescence (Kaess et al., 2012), with the strongest association with depression and anxiety (Tomko et al., 2014). It is also very common for people with BPD to have comorbid diagnoses with Axis II disorders such as avoidant, dependent, and obsessive-compulsive personality disorders, as well as other personality disorders (Kaess et al., 2014). Post-Traumatic Stress Disorder. According to Frias and Palmar (2014), people with borderline personality disorder are significantly more likely to also have a diagnosis of post- OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 9 traumatic stress disorder (PTSD) than the general population. Comorbid diagnoses of BPD and PTSD amplifies the psychopathological and psychosocial impairments more so than those with a diagnosis of BPD alone. It is possible that these two disorders are commonly found together because of a trauma that happens in childhood during a crucial time of personality development (Fras & Palma, 2014). Boritz and colleagues (2016) found that patients with comorbid BPD and PTSD reported higher psychological distress than participants with BPD before treatment as well as after treatment. This is not to say that the treatment was ineffective, but the distress reported after treatment by those with comorbid BPD and PTSD continued to be higher than those with a diagnosis of BPD alone (Boritz et al., 2016). Substance Use Disorder. Substance use disorder (SUD) is also frequently found to cooccur with BPD (Kienast et al., 2014). Illustrating this, one group of researchers found that 90% of the participants who had BPD also met the diagnostic criteria for SUD (Zanarini et al., 2011). People with BPD were 21% more likely to develop SUD involving alcohol and 65% more likely to develop SUD involving drugs than people with other Axis II disorders. Substance use disorder is also more likely to be recurring in people with BPD than in people without BPD (Zanarini et al., 2011). It is therefore important for healthcare providers to consider addressing comorbidities with BPD (Kienast et al., 2014). Interventions for Borderline Personality Disorder Many interventions have been developed to address the symptoms of BPD. Studies suggest that, while many medications have been developed to address BPD symptoms, medication alone does not help long-term recovery and should be bolstered with other interventions specifically tailored to the person and his or her symptoms (Borderline Personality Disorder, 2016). OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 10 Dialectical Behavior Therapy (DBT). Dialectical behavioral therapy (DBT) has been studied extensively and focuses on the relationship between the person and healthcare professional through patient-centered skill-building, psychotherapy and a team approach (Bendics, Comotis, Atkins & Lineham, 2012). It also includes education on balancing life changes, and is typically performed over a one-year period (OConnell & Dowling, 2014). Dialectical behavioral therapy has been suggested to improve attitudes toward daily experiences (Bendics et al., 2012). Bendics and colleagues compared DBTs effectiveness to treatment as usual (TAU) among 101 white women between the age of 18 and 45 diagnosed with BPD. Participants were randomly assigned to receive TAU or DBT and given self-report surveys to rate their own introject (part of a persons personality that includes self-directed actions), attitude, interdependence, and how their therapists acted towards them. Questions were sorted into eight categories, which included emancipation, affirmation, active love, protection, control, blame, attack, and ignore. This study found that those who participated in DBT experienced an increase in self-affirmation, self-love, and self-protection significantly more than those who received TAU (Bedics et al., 2012). Emotional Regulation Training (ERT). Another type of therapy that is often used for BPD is emotional regulation training (ERT), which consists of learning techniques to control strong emotions by way of healthy coping skills. Schuppert et al. (2012) compared its effectiveness in 109 mostly female participants ages 14-19 to TAU (which consisted of medication, psychotherapy, and counseling). Emotional regulation training was given for 17 weeks, while TAU was given for 6 months. Post-intervention interviews and questionnaires indicated no significant difference between groups; both groups demonstrated improvements in symptoms such as affective instability, borderline symptoms, and psychopathy. However, at the OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 11 12-month follow-up assessment, those who participated in the ERT treatment had a larger improvement from the time their intervention ended, suggesting ERT may facilitate long-term change after treatment has ended. It is important to note, though, that participants in the ERT group who had a history of abuse were less likely to show decreased severity of borderline symptoms and also less likely to improve in their psychopathy after treatment (Schuppert et al., 2012). Metacognitive Training. Metacognition is, in the most basic form, the ability to think about thinking. Metacognition and social cognition both refer to a persons interaction with others, but metacognition focuses on the persons understanding of the self during these interactions whereas social cognition focuses more on the ability to accurately perform specific tasks in social contexts (Wasmuth, Outcalt, Buck, Leonhardt, Vohs, & Lysaker, 2015). Some scholars have delineated four domains of metacognition (Lysaker & Klion, 2018). The first domain is self-reflectivity and addresses how the client is able to understand their own mental state(s). Understanding others minds is the second domain and consists of the clients ability to understand the mental experiences of others. The third is decentration and is the ability to entertain other views and perspectives on life events. Mastery, the final domain, is the ability to take the first three domains of metacognition (self-reflectivity, understanding others minds, and decentracation) and apply them to social and psychological situations (Lysaker & Klion, 2018). Schilling, Moritz, Kother, and Nagel (2015) compared effectiveness of metacognitive training to progressive muscle relaxation (exercises involving tensing and relaxing muscle groups to promote relaxation) and found that metacognitive training was significantly more effective in reducing symptoms of BPD. Participants of the study reported improvements in self-confidence, empathy, taking others perspectives, and coping. It was also reported that the metacognitive OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 12 training was more fun to participate in and encouraged participation more than the progressive muscle relaxation treatment (Schilling et al., 2015). Borderline Personality Disorder and Illegal Behaviors One central aspect of BPD is that it often entails risky, impulsive, self-harming behavior. (Dixon-Gordon, Chapman, Weiss & Renthal, 2014). A study of 375 men and women from an outpatient internal medicine clinic for non-emergent medical care by Sansone, Lam, and Wiederman (2012) examined the relationship between BPD and illegal behaviors. They found that younger respondents were more likely to have participated in a number of illegal behaviors, and men more commonly participated than women. The six most common illegal behaviors performed by people with BPD included aggravated assault, simple assault, disorderly conduct, driving under the influence of alcohol or drugs, drug abuse violations, and public drunkenness or intoxication (Sansone et al., 2012). Another study with the same participants focused on whether people with BPD demonstrated more disruptive behaviors in the medical setting than those without the disorder (Sansone et al., 2011). Researchers found that those with symptoms of BPD were more likely to have partaken in disruptive behavior (82.5%) in a medical setting than those who did not have BPD symptoms (43.7%). They also found that those who did partake in disruptive behaviors were more likely to perform the following specific behaviors: yell, scream and verbally threaten medical care providers, refuse to talk to medical care providers, and talk negatively to medical personnel or family members (Sansone et al., 2011). Gender Differences in Borderline Personality Disorder The DSM-5 states that borderline personality disorder is diagnosed predominantly (about 75%) in females (American Psychiatric Association, 2013, p. 66). Some have suggested OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 13 that the tendency to diagnose more women with BPD than men may indicate a gender bias among clinicians (Sansone & Sansone, 2011). The gender difference in diagnosis may also be due to women being more likely to seek help regarding psychological needs (Skodol & Bender, 2003). Furthermore, women more frequently end up in medical facilities due to self-harm behaviors and are therefore more likely be recruited in studies on BPD (Sansone & Sansone, 2011). Another study suggested that causes of BPD such as abuse, neglect, and internalizing problems are more prevalent among women than men (Skodol & Bender, 2003). This study is unique in that the sample used was comprised of mostly men and therefore adds to the small body of knowledge about mens experience with BPD. Occupations and Borderline Personality Disorder Occupational therapy emphasizes the importance of occupational balance. Occupational therapy is defined as the therapeutic use of everyday life activities (occupations) with individuals or groups for the purpose of enhancing or enabling participation in roles, habits, and routines in home, school, workplace, community, and other settings, (AOTA, 2014). Occupation refers to any meaningful activity, not just the persons vocation. Few studies have examined relationships between occupations and BPD. One study examined the occupation of sleep in patients with BPD, finding people with BPD often have sleep difficulties and/or used sleep to cope with symptoms (Wood et al., 2015). Although sleep is an important occupation for everyone (AOTA, 2014), symptoms of BPD can be amplified by lack of sleep, making it a high priority for those with a diagnosis of BPD. This study found that establishing routines was helpful in developing healthy sleep patterns. However, findings were drawn from a very small sample and are not necessarily generalizable to the wider BPD population (Wood et al., 2015). Another study found that women with BPD had few organized daily occupations (Falklof OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 14 & Haglund, 2010). While this study also had a very small sample, it may offer preliminary insight into the occupational lives of those with BPD. For example, when discussing their lives, participants in this study were much more likely to give examples of incompetence in performance than they were competence in performance. Participants reported that goal setting was viewed negatively because of their failure to accomplish desired occupations. Shame and unhappiness were commonly used to describe how the participants felt when trying to manage their lives (Falkokf & Haglund, 2010). The main themes of women with BPD were found to be positive self-image, self-image problems, and how they viewed their competence in occupational performance. Overall, the study stressed that people suffering from BPD have great problems with their ability to adapt to daily life and organize their daily occupational routine (Falklof & Haglund, 2010). The limited amount of research on occupations and BPD, as well as the small sample sizes of the few existing studies, illustrates a critical need for more research in this area. This critical need is also demonstrated by the majority of participants being women. The present study addresses this need through qualitative, grounded theory exploration of the occupational lives of people with borderline personality disorder. Such research may help occupational therapists effectively assist clients in their recovery processes. Methodology This study used existing data from a larger study looking at metacognition and function in people with BPD. All procedures of this study were approved by the university and Veterans Affairs institutional review board. Participants for this larger study were recruited via clinician referral. To be included in this study participants had to be patients at the VA Medical center, receiving services for BPD. Patients under 18 and pregnant women were excluded. OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 15 Participant Characteristics Participant ages ranged from 26 to 67 and included 18 participants (2 females and 16 males). The ethnicities of the participants are as follows: 72% Caucasian, 22% African American, and 6% Interracial. There were 12 (66.66%) participants who listed alcohol as their preferred substance. Four (22.22%) participants listed cocaine or crack cocaine as a preferred substance. Twelve participants (66.66%) had PTSD, 15(83.33%) had some form of depression, and four participants had Axis III disorders including chronic obstructive pulmonary disease(two participants), pancreatic shock (one participant), and fibromyalgia (one participant). Measures This study collected data using the Indiana Psychiatric Illness Interview (IPII). The Indiana Psychiatric Illness Interview (IPII) is a semi-structured interview designed to elicit illness narratives (IPII; Lysaker and Lysaker, 2002). According to Lysaker and Lysaker (2002), the goal of the IPII is to reopen the novelty and richness of life experience in the context of that person coming to play an active role in interpreting and forging constructions about that experience (Lysaker and Lysaker, 2002). The IPII consists of four sections that take between 30 and 60 minutes to complete. The first section is a general free narrative. This section allows the individual to discuss their life experiences openly and helps establish rapport with the interviewer. The second section is an illness narrative. This section takes a deeper look into the individuals perceptions of his or her mental illness. The third section evaluates the individuals perception of the illnesses control on his or her life and how well he or she manages illness. The fourth section examines the individuals thoughts about the future and aims to see what will remain the same and what will change as a result of changing interpersonal and psychological functioning (Roe et al., 2008). OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 16 The Metacognition Assessment Scale (MAS-A) is reliable in evaluating and measuring a clients metacognition from an open narrative stated by the participant (Broker, et.al, 2017). The MAS-A is able to separate a persons metacognition into the four separate dimensions including self-reflectivity, understanding others minds, decentration, and mastery. The MAS-A can determine the clients strengths and weaknesses in regards to their ability to understand their thoughts. Research Design This study utilized a grounded theory approach. Grounded theory provides a method for developing theories about the observed world in order to better understand it (Charmaz, 2014). Theories derived from this methodology are meant as a means of interpreting the outside world, not to state absolute fact. The grounded theory process involves using rich qualitative data to identify themes. The grounded theory coding process begins very generally and then gradually becomes increasingly precise (Charmaz, 2014). This research design is appropriate for this study because there is limited research on BPD in the context of occupational therapy. Data Analysis Eighteen transcribed and de-identified interviews of veterans with BPD were analyzed by the research team using the following steps outlined by Charmaz (2014). Initial Coding. The research team first performed line-by-line coding on the first page of one transcript as a group. This involved reading each line of the transcript and assigning a code to each meaningful text unit. This process allows researchers to stay open to the data, and prevents any themes from being overlooked (Charmaz, 2014). After performing line-by-line coding on each page of the first transcript as a group, the researchers established an initial codebook to use when looking at further transcripts, with the knowledge that codes would be OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 17 continually edited throughout the data analysis process. The initial codebook was established by examining the line-by-line codes and establishing themes based on these codes. Focused Coding. During this stage, significant codes identified in initial coding are applied to large amounts of data in order to determine the accuracy of the codes identified. New ideas continue to arise in this process and the codes in this stage are defined as necessary (Charmaz, 2014). As the codes are refined they are applied to previously coded data. To complete focused coding, the research team split into two groups and, using the codebook, coded five transcripts total, coming together after each transcript to discuss the codes as an entire group. During this process, each team read the codes they used for a specific portion of text, and upon agreeing on a code unanimously, it was added to a final version of the transcript. Discrepancies were resolved by consulting with the faculty mentor member of the research team. Axial Coding. The third step of grounded theory coding is axial coding, which is described as a way of sorting and synthesizing data (Charmaz, 2014). Axial coding is used to help researchers answer questions about the data and begin to understand relationships among the themes (Charmaz, 2014). The research team reviewed all of the coded transcripts in pairs, examining the data for each unique code and looking for themes and sub-themes within each code. This allowed the researchers to gain a better understanding of each codes meaning and the ways in which data for each code presented. Researchers looked for similarities and differences in how data for a specific code presented among individual participants. Theoretical Coding. The final coding stage of grounded theory is theoretical coding, which is a means of identifying relationships between the codes and is a step beyond axial coding (Charmaz, 2014). The researchers used themes found in focused and axial coding to determine relationships among the main codes. These relationships were then put into a figure in OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 18 order to visually demonstrate observed relationships. In this stage of the coding process, some codes were combined, moved, or renamed in order to best describe the data. The findings of theoretical coding sculpted the theory derived from this research. Trustworthiness. Investigator triangulation was used in this study to increase trustworthiness of findings and methodology. Investigator triangulation involves using two or more researchers in a study to interpret the data in order to minimize biases (Denzin, 1973). This study utilized a primary investigator and four secondary investigators to interpret the data and develop themes throughout the research process. Findings This grounded theory analysis resulted in the following main themes: influencing environment, internal experience, and occupation. Each main theme is accompanied by subthemes: being abused, arising problems, feeling neglected, feeling victimized, escape, selfsegregating, positive change, participating/engaging, and substance abuse. These themes can be found in figure 1. Below are the descriptions of data contributing to these themes and the resulting theory. Themes Influencing Environment. The theme influencing environment describes data revealing the positive and negative ways participants current lives were shaped by past experiences. Data reflecting a positive environment included references to social environment (family and children), and/or physical home or shelter. For example, one participant noted: Um, we were kind of living with my grandparents at the time so I remember a kind of stability there. There was always breakfast. There was always kids to play with um theres toys. It was it was a good place to live. This excerpt demonstrates how a positive environment produced stability OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 19 and fulfillment of needs such as food and kids to play with. Receiving positive love, attention and help from parents growing up influenced and sometimes counter-acted negative feelings. As one participant recalled: I didnt have any confidence anymore and my dad spent every night working with me and because math was his big deal we spent a lot of time with math and science. He was chief of training for the fire department and they have to do a lot of math and he would bring their tests home and have me do some of the problems there. He had a way of guiding me to answersnot giving me answers but being a true tutor that helps you see the path to get there. Umand so he would get really excited, he would say, oh, Wow! Some of the guys in the class werent even able to get this one! So probably for thatyou know a lot of those reasons that I enjoyed the math and science tremendously. Negative environmental influences described problematic family histories leading to current life struggles, or negative military experiences. One participant stated, I remember when I was 10 and they picked my sister up basically for prostitution that uh the judge had ordered her to seek psychiatric counseling and the center she went to, they got ahold of my parents and said they wanted to see the whole family and get all their family in for counseling and my mom and dad refused, and I think partly it was because my mom was afraid that the abuse that she had um I dont know, I mean it was odd, I dont remember my sisters going through what I did, but um they could have had it just as but, I dont remember, but yeah there there was enough abuse by the time I was 10 that didnt want, she didnt want anyone going to the counseling talking to anyone about it. The impact of negative environmental influences is further described in the following sub-theme. OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 20 Being abused. The sub-theme being abused was used when a participant described some form of physical, emotional, psychological, or sexual abuse, including bullying and being unfairly punished or persecuted. Almost all of the abuse that participants described occurred during childhood, and all abusers were authority figures, except instances of bullying. When a participant described being bullied, it was always by peers. All but one described the bullying as happening in childhood, during their school years. One participant described: um there were a group of like 5 kids that I dont know why but they were allowed to pick on me every day on the playground and in class. I remember that whoever would sit behind me used to flick my ears when the teacher wasnt look and they would um actually like hit me on the playground and harass me and torment me every day and that happened every day for 3rd, 4th, 5th, and 6th and um nothing was ever done about it and it was odd. The outlier was an instance of being bullied by other soldiers while in the military. This participant said: Um I started getting bullied and like I had never been bullied in my entire life but I really got bullied there. And I couldnt figure out why I was getting bullied but Im not someone you bully. Ive never been someone you bully. I will never confront you head on. Ill never fight you, Ill never go to jail for it. I was uh, cornered by four of my peers and, during the assault, I had cigarettes extinguished in my eyes. The majority of the instances of bullying were manifested through physical bullying, but there were some manifestations of psychological bullying as well through threats, spreading rumors, and being excluded from participating and engaging with peers, such as one participant who tried to join after school curricular activities: OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 21 I remember walking in on one of those clubs wanting to join and I got locked out. Locked out. And it wasnt like they were being polite locked out it was viciously locked out and that set a tone for me for a long time. In all instances of bullying the person felt unwanted by their peers and was afraid to try to connect with peers. Psychological or emotional abuse, sometimes in the form of neglect occurred in childhood or adolescence and always involved family members. One of the participants said: Eleven years old on umeven to this dayits turned to verbal abuse or criticism, always. Everyonedad was super critical of everything, especially me and notnever was able to satisfy him never lived up to any of his expectations. Another participant described psychological and mental abuse: And this is when the abuse kinda started. Like I dont wanna say it was sometimes it was some sort of physical abuse at that point... He never let us come in the house for dinner. He was like just eat out of the garden its healthier. And I always thought that was an abusive thing to do but some people dont see it that way Because he yelled a lot, he was demoralizing, called you fat or worthless or he always for some reason thought I was gonna be gay. He always had that assumption and I just really resent that fact. Um one time he made us sleep outside for an entire week with just a poncho and got fed out the back door. Um, things like that. But that was at this house. That was when things started to really turn for me. Multiple participants reported experiencing physical abuse more than once in their life, usually recalling several specific attacks. One participant described: OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 22 Um when I was younger, or at some point, I think somebody tried to suffocate me because now, I um I dont know if it was once or more than once but I have issues with plastic bags and making sure that plastic bags are tied up in knots so that no one can accidentally get it put over their head. While another described: the discipline being in the form of uh, what would be considered now, beatings. Uh, and I uh, they say I was a mischievous child so I experienced a lot of physical beatings which I was told was a form of love. One person described the culture of the neighborhood he grew up in as contributing to physical abuse: Also a lot of emphasis was placed on a, who you were as far as your sexual prowess. Uh, very limited worldview, uh, racism played a factor, discrimination played a factor, um. Also police brutality played a factor in my life. Most of the participants who reported sexual abuse expressed these memories as being hazy, almost dreamlike. One participant reports thinking of the abuse everyday: I have um memories like real fragmented memories of being molested by a Priest in church and um possibly in the Priests home, the rectory, um I believe I was in there at least once and obviously I would have been molested if I was in there. Um, Ive had just a few dreams about that but um nothing concrete, nothing you know that a specific Priest, or I cant give a date or anything like that but I know it happened and in fact its odd I still think about the Priest almost every day I think about him and that was a long time ago, and um so obviously I think something happened that I would still think of him. In couple of the instances sexual abusers were military personnel: While I was waiting for my leg to healis when umtold me the guy who had been my trainer when I first got to basemy aircraft trainer had raped me and thenI didnt OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 23 think it was a rape because I was racing bicyclesI went to my massage therapists who was also a social worker and she took one look at me and said theres something wrongwere not doing a massage today, were going to talk. She was the one that told me I was rapedand I said no I wasnt because I had all these classes in basic training where they show you someone jumps out from behind the bushes but she got me to understand that it was a rapeand it was four days later and I knew that I couldnt have any resolution with (inaudible). One participant was abused by her brother and his friend: I was about 11 or 12 and uhI was forced you know, through threats, to give him oral sex and his friend, too. UmI was three years younger than him and much weaker than him umhe wouldhe often told me he was going to kill me. I felt he hated me. And everyone wanted me to be like he washe was ahe was an overachiever. Another described being molested by a family member and again by a babysitter: In particular one guy, was a child molester that I unfortunately had the situation of um allowing him into our family. Um he molested me and molested two of my younger sisters. Um raped me um had me have sex with other gentleman and that went on for several years. Um we thought that um there was something wrong with us of course. That you know, we werent the only ones going through it, and it wasnt right, but there was nothing we could do about it Um it was not my only time being raped however; I was raped by a babysitter. Uh a female babysitter that was about four years older than I was while my mother was at work. This was between her boyfriends and she taught me certain things about making love with a women so um being raped um by two different genders definitely had a bearing on my sexual and love life. OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 24 A commonality among participants being abused, as evident in the above excerpts, was a sense of disempowerment resulting from a lack of support or ability to fight back or address the problem. Arising problems. Many of the traumatic experiences described in the previous theme likely contributed to the arising problems identified in participants adult lives, which occurred in very similar ways across multiple participants transcripts. The main problems seen were: 1) early or rushed marriages which ended in divorce and legal trouble (e.g. burglary, assault, illegal firearms); 2) living unstable lives post military deployment (e.g. job loss, family troubles, domestic abuse, homelessness); 3) unexpected pregnancies; 4) problematic substance use; 5) unstable relationships and affairs; 6) emotional breakdowns during employment; 7) rising mental illness symptoms (e.g. poor emotional regulation) and associated hospitalizations and doctor visits; and 8) feeling misunderstood or separate from others. Often these problems were interrelated, creating a snowball effect of arising problems. Illustrating this, one participant stated: I signed a piece of paper ending my military career and I still have a couple years left but inevitably I wasnt allow to stay in past the contract date because I didnt move to Hawaii thats when I started uh abusing alcohol and in that one year...Ive dealt with so much life and deathI lost a $100,000 dollars...um my house, I lost the house that I bought and builtmy kids, my wife, my family and uha lot of my family did not understand me. Another participant stated; I uh got my girlfriend pregnant when I was 19 and she was 17. Uh had a got married right after she graduated high school. Had a baby, that didnt work out. As OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 25 seen in other transcripts, arising problems were interrelated. Another participant described how his problems arose after returning from the military, I [inaudible]. I just was in and out of the hospital. Um and one of the hospitalizations I met this woman XX [name]. I divorced XX [name]. XX [name] and I left town and went up to XX [location] just outside XX [location]. We got married. Um I got social security disability and got like $25,000 in back pay for that and I won a workmans comp claim and got $70,000 for that and we blew a hole through the [inaudible] and when the money was XX [name]. XX [name] was done. One participant specifically referred to arising problems in his life: So when we got to school start problems started arising um, we were called liars. But it wasnt til us we had no concept of what they were talking about. We told stories which is what we did at home. And so social services got involved and counselors got involved because they thought our concept on reality was warped. Internal Experience. Data comprising internal experience detail the thoughts, feelings, and emotions of participants. Although data may in part describe emotional counterparts of the experiences documented in the previous theme, they also reflect the nuances of how participants perceived, interpreted, and internalized events. Participants described feeling neglected, victimized, and connected. Feeling neglected. All accounts of feeling neglected took place during childhood. Many of the participants did not or could not verbalize reasons they felt neglected, but half stated that they didnt feel or receive love: I think I have memories of actually being in my mothers womb and beingthings being very chaoticvery disturbing, very uncomfortable, Ive just recalled feelings of that and OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 26 when I was a child I felt that my mother never really liked me or wanted me. I never felt a part of the family. One participant explained: I never received the attention I should have. I didnt receive the love I should have uhI didnt receive the accolades I should have. I never received what I feel most children deserve to receive and uh..trying to compensate today by loving myself where I didnt receive lovepaying attention to myselflistening to myselfumbeing good to myself in those areas that I felt I was shortchanged. Umand it just seems like the whole family was against me like I was some type of alienit was just wild. Feeling victimized. Feelings of victimization arose while at work, in the military, or in school. Feeling victimized does not imply that related occurrences were not antagonistic or discriminatory; rather, these data reveal the internal responses to such situations. Similar to data in the previous theme, participants commonly lacked a sense of empowerment to respond effectively to problems. The data comprising this theme enriches data in the previous theme by illustrating not only the problematic events but also the feelings accompanying them and the participants lack of power and self-efficacy in these situations. One of the participants discussed how he felt victimized while in school, I sold out my priesthood cuz I went from catholic school to public school cuz catholic school flunked me out on purpose. Another participant described his feelings of victimization in the work setting, The more they kept telling me you need to start getting things done or youre going to end up in the bottom 10%, the less I was able to accomplish. Then they put me on a personal improvement plan saying that, here are the things that you have to do. You have four weeks to do these. If you dont get them done, well let you go. If you do get them done, OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 27 well take you off the performance plan. You still have to do all the other work that youre supposed to be doing right now. Either one of those would have been full-time. It justit felt like I got set up...so I got fired from there . This quote reveals how work-related demands and conditions felt like a personal attack, perhaps seeming unfair or un-accomplishable, and thus the participant felt victimized. Occupation. The following data categorized under the theme occupation illustrate the performance patterns of participants, and are further delineated by several subthemes. In general, the sub-theme participating and engaging illustrates the occupations of this studys participants. Some participants specifically describe new occupational endeavors that provided positive change. Others used occupations as a way to either escape problems (this included instances in which participants escaped through substance use) or to distance themselves from people or circumstances. The latter instances were categorized under the sub-theme self-segregation. Participating and engaging. Most participants described military involvement as their main occupation. Others described participation in school and work. Notably, many descriptions of participation at school were negative; therefore, most participants did not continue their education. Instead, they either began working or joined the military. Most participants described engaging in work, not as particularly meaningful but rather, as something to do: Um after XX [location] I came back to XX [location] and I worked at a correctional facility for maybe two years. I went from uh I ended up as case manager at the correctional facility. Um, that was 2010 I poured concrete one summer with my good buddy just really for something to do OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 28 Notably, many of the work experiences were short-lived and participants discussed frequently changing jobs. For example: I work as an appliance technician. Got a job as an appliance technician. And I pretty much liked the job. It was okay. But after a year the guy let me go and I got another job working with the uh T.V. shop that was adding appliances to their lineup and they hired me to do the appliance technician. While participants did not describe deriving much meaning from their work, they also did not report non-military work to be a negative experience. Participation in the military, with a few exceptions, was largely reported as troublesome: I ended up staying in the worst place on Gods green earth. Fort [inaudible] will change anybody. I dont know how the military has not caught on to that we probably shouldnt leave people out in the middle of nowhere and work them like they do as much as they do and not expect people to come out absolutely bat shit crazy. Um were you military? As an exception, one participant explained the occupation of being in the military and how it was meaningful and gave purpose: So when I was 17 I had my mom sign the paper so I could join the Army and I left when I was 18I kind of felt like my callingI think itmoreit kind of has to be your calling to do something like thatits not something you would do randomly do something like that because know you are going to Iraq and Afghanistan soit was important to meI did thatum I did very well in the militaryumI went to the board as a staff sergeant when I was 21I felt like I was better than most people at what I did, just because it was something that came more naturally to me than other jobs or other um skills...I just had a ..it was just my thing...I was good at itand the time OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 29 Positive Change. All of the instances categorized in this theme described participants life changes such as a joining the military, quitting the military, getting a growth spurt, and becoming a better student. Many participants joined the military with the goal of changing their lives for the better, and the initial occupational participation of being in the military was experienced as positive: And I went to the army, volunteered to go to desert storm, desert shield. Everything was great while I was there. One participant experienced a positive change when he quit the army got out to XX [location] threw my Army coat in the garbage can, took the first breath of my life. One participant experienced a break up and then spent some time participating in new occupations, Um, Im back, um oh anyway, we broke-up, I was um, really II spent the next year really getting my life together, saved up money, bought a new car, and lived in a really tiny house so I could save my money and um did a lot of overtime and um and I just didnt really have any girls in my life at that time for like a year. Um Id go to the gym and like go out with you know somebody after wed worked out or something but never turned into anything other than just friends. Most of the participants verbalized that they could, finally live, or life was good, or I got my life together as the reason(s) new occupations fostered positive life changes. Escape. Most participants who described escape occupations were physically leaving a bad living situation whether it was extreme (such as abuse) or mild (not liking the town or neighborhood that he or she lived in). One participant described fleeing to the military after a break up: she broke up with me and so I joined the AirForce. The participants who escaped due to not liking the town they lived described their neighborhoods as slum type neighborhoods: From that point on, I thought about getting away from the house, so I did. I enlisted in the um OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 30 marines. One participant left his neighborhood to find more opportunities, and started attending college. However, when people described occupations as a means for escape, many of the occupations people escaped to were short lived, as evidenced by the following quote: and I got out of there pretty quickly and moved to the big city in [city] um which was after I started college and um quit my freshman year. Substance use. Some participants escaped negative feelings or circumstances through substance use, whereas others used substances as a recreational/leisure occupation. Most of the excerpts categorized in this theme illustrate participants efforts to escape negative feelings or experiences via alcohol. These data are accompanied by descriptions of negative consequences of alcohol use. Many also reported marijuana use, but these data reflected routine use without negative consequences or to escape: But like I said, they stop by and we smoke a little something because they dont really drink. Furthermore, data frequently illustrated a link between alcohol abuse and the military particularly negative events that occurred while in the military. One individual highlights the extent of his alcohol use: I drank heavily, I was drunk every day in the box, I had a flask on me every time, I drove drunk, I drove tanks drunk, I was a recluse. At this point I didnt care who I hurted, I wanted to hurt somebody, I was suicidal, I was like please shoot me cuz Im not ever going to kill myself but um at the same time I dont care if someone else does it. If Im going to go down Im going down in a blaze of glory I guess is what they call it. I dont really call it glory cuz its not really glory. Im going down in a blaze I guess. This excerpt shows both the extent to which drinking alcohol was an occupation for the person as well as the need for emotional escape and the overall negativity surrounding both military and alcohol use. Another participant discusses the connection between alcohol and suicide: um I OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 31 was gonna kill myself. I had a gun in my mouth and I was gonna pull the trigger and I was drunk. One participant highlighted their use of marijuana as a form of escape: I got out of the Army in February of this year2014and umas soon as I got outI started smoking potto numb myselfwhich it didit helpedbut you cantyou cant function properly as a human when youre stoned out of your mindwhen you have responsibilities and children and things like thatbut uhit numbed me enough to uhprolong the pain that I couldnt handle and it worked for that and I quit smoking in July and Ive beenI havent smoked since thatIve had a few incidents with alcoholone of themI ended up in the hospital here...I woke up in the ER a few weeks agobecause I drank too much...and I just woke up here and didnt know how I got here or anythingumthats kind of it. Self-segregation. The data suggested that participants used some occupations (or embraced avoidance of occupational participation) to segregate or distance themselves from others or from troubling circumstances. While similar to data describing escape, the data categorized in this theme specifically illuminated how people separated themselves from life and/or other people as a whole, rather than just escaping a specific troubling set of circumstances. For example, one participant discussed how his feelings about people affected his participation in everyday life stating, Didnt want to do nothing because I didnt want to be like everybody else. Another participant segregated himself by staying in his home, I didnt leave my house unless I absolutely had to, meaning I had to be almost completely out of cigarettes and food in order for me to leave my house. One other participant discusses his purposeful OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 32 segregation from his family by stating, Um, my family I absolutely is distance from me as I could possibly make them. Resulting Theory Figure 1 illustrates the three main themes (in large font) established via grounded theory analysis: influencing environment, occupation, and internal experience. Beneath each main theme, sub themes are listed in small font. The arrows in Figure 1 indicate the ways in which the themes were interrelated, according to the data. Occupation and Environment. The bidirectional blue arrow illustrates the two-way interaction observed in the data between the participants occupations and their environments. Data illustrated how a negative environment could impact occupations such as work and community mobility which in turn could enable or contribute to ongoing problematic environments. For example, one participant stated, So no matter how hard I work it would always go to [stepfathers] gambling problems. I resent. I saved up all this money to buy a really nice car and he stole my money and stuck me with this junker and said I should be happy about that. This participant described having to work extra jobs to fund his stepfathers gambling habit and was denied the vehicle he wanted to purchase and instead received a lower quality car. Another quote illustrates how environments could positively affect and be affected by occupations: Um, we were kind of living with my grandparents at the time so I remember a kind of stability there. There was always breakfast. There was always kids to play with um theres toys. It was it was a good place to live. OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 33 This quote shows that when the participant had a positive environment in childhood, he was able to engage in positive occupations such as play, which contributed to a positive and engaging environment for him and his siblings. Another participant noted : We have a seven-year old daughter together. Her name is *** and she is the light of my life. She is my motivator. She keeps me going. For this participant, having a child contributed to the participants motivation to create a positive family environment that was, in turn, uplifting and motivating. Being a parent, however, was also described as creating environmental demands that the participant was not equipped to handle: So she and I fought a lot and I was I started to become violent at that point. I was very violent to both my sisters. Cuz I couldnt cope with the fact that I needed I had I had to budget for the food, I had to make sure the shopping got done and the house got cleaned, the cars got taken care of. Additionally, this participants relationships with his siblings were strained due to the demands of being a parent, having a negative impact on this social environment. For this participant, the occupation of being a parent created a stressful environment that consisted of social stressors and occupational demands that the participant could not handle. Occupation and Internal Experience. The bidirectional grey arrow illustrates a twoway interaction observed in the data between clients occupations and their internal experiences. Clients occupational choices impacted their internal experiences. In turn, internal experiences shaped their participation level in occupations. This included what occupations participants chose to engage in as well as the nature of participation (e.g. short-lived, self-harming, a means of escape). For example, some participants described difficulty in occupational participation following loss of loved ones: About three months after he [the father] died, I started not being OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 34 able to function at work and how lack of participation in life contributed to ongoing or increasing feelings of sadness. The unidirectional orange arrow illustrates that clients environments impacted how they experienced life events internally, but that, according to the data, their internal feelings did not directly alter their external environments. One participant described: I have a one older brother. He is three years older than me. I would say we were fairly close umnow we are not quite as close anymore, but it is just more because of geographical andand adults you get busy when you have kids and stuff like that. This quote shows how the environment, in this case the geographical location, had an effect on the participants ability to connect with his brother, but his internal feelings about the lack of connection were not followed by any related environmental or occupational changes. Data showed the relationship between internal experiences and the persons environment as unidirectional, where the environment impacts internal experience but not vice versa. However, internal experience has a bidirectional relationship with occupation, which has a bidirectional relationship with environment. Internal experience can indirectly influence environment though occupation. As social participation is included under the theme of occupation, this shows that internal experience can indirectly affect a persons social environment. This inter-relatedness of themes demonstrates an overall (albeit indirect) relationship between all of the themes, as shown by the circular flow of Figure 1. Discussion In the context of occupational therapy, occupations have been defined as: The things that people do that occupy their time and attention; meaningful, purposeful activity; the personal activities that individuals choose or need to engage in and the ways in which each individual OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 35 actually experiences them (Boyt Schell, Gillen, & Scaffa, 2014a, p. 1237). According to the Occupational Therapy Practice Framework (OTPF), Occupations occur in context and are influenced by the interplay among client factors, performance skills, and performance patterns (AOTA, 2014, p. S6). Data from this study suggest occupation is bidirectionally linked to both internal experience and environment. As such, it may be a powerful means for initiating change in both of these areas. In other words, the findings of this study suggest that occupational therapists may be uniquely situated to positively alter the internal experiences and environments of people with BPD by facilitating positive, meaningful participation in occupations. As mentioned in the literature review above, BPD is known to affect women more than men. A previous study done by Falklof & Haglund (2010) mainly looked into the occupational lives of women with BPD and found main themes of having a lack of daily occupations and the inability to adapt to changes in daily life as a result of negative self-image and incompetence to perform occupations. The researchers of this study found similar themes with a primarily male participant pool as shown in Table 1. Data from this study showed that many of the participants had difficulty sustaining relationships and that this difficulty was often related to symptoms of BPD. Therefore, occupational therapists may positively influence the lives of people with BPD by promoting occupational engagement through social participation and occupations. This form of occupationbased intervention may help people with BPD create and sustain supportive environments. Sansone and Sansone (2009) report that family intervention could be an effective way of addressing the social environment of individuals with BPD by encouraging family skills, social network building, and coping skills. Nouvini (2017) also found that involving family of those with BPD in treatment can create a therapeutic relationship that can transfer over to all social OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 36 relationships to create a more positive social environment. In addition to difficulty sustaining relationships, the participants of this study often reported difficulty keeping jobs. Participants frequently reported dropping out of school and engaging in criminal behavior. The symptoms of BPD such as drug use often became occupations for the participants. Many of the participants developed a role as a mentally ill person and incorporated this new role into their personal identity. Although substance abuse is a symptom of BPD, it typically became an integral part of participants everyday social and financial life. This is in line with prior research by Heibig and McKay (2003), who examined substance abuse as an occupation and how occupation is affected by internal and external environments. The researchers concluded that negative environments can lead to occupational imbalance, deprivation, and alienation (Helbig & Mckay, 2003). More recently, Wasmuth, Scott, and Crabtree (2014) suggested that addiction is occupational in nature and that providing new occupations may facilitate drug abstinence and recovery in people with addiction and mental illness (Wasmuth et al., 2014; Wasmuth & Pritchard, 2016). This research supports the current proposition that occupational therapists may help clients positively influence their environments and experiences by fostering healthy occupational participation. Limitations Typically in grounded theory the researchers re-interview participants during the data analysis process on an ongoing basis to verify and distinguish themes as they emerge. However, in this study the researchers analyzed pre-existing data obtained from a single interview. Participants were not available for researchers to re-interview. However, the data collection tool used for this study is designed to provide rich, qualitative stories of personal experiences and provided researchers with lengthy narratives about participants life stories. Additionally, most OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 37 of the data was from veteran male participants who were primarily white, therefore illustrating themes that may be specific to this sub-population. Future Research It may be beneficial to conduct a mixed methods study that examines the qualitative experiences of people with BPD alongside quantitative factors such as age, race, employment status, metacognition and other functional cognitions tests, and symptomatology. A study conducted by Johnson and Onwuegbuzie (2004) compared the mixed methods approach to the traditional qualitative and quantitative approaches. Based on this research, they concluded that mixed methods can test grounded theory designs, provide more evidence to support conclusions, and can work in conjunction with qualitative and quantitative methods in order to improve the overall findings related to practice (Johnson & Onwuegbuzie, p. 21, 2004). Based on this studys findings, future research should also explore the effectiveness of occupation-based interventions for positively impacting internal experience and environments of people with BPD. Conclusion Findings illustrated how occupations affected both environmental contexts and internal experiences such as self-image and appraisal of relationships and events. This research underscores how occupational therapy may powerfully impact lives of people with BPD and suggests that people with BPD may have the ability to alter their internal experiences and their environments through intentional use of occupational engagement. This research is unparalleled because it looks specifically at the occupational lives of men with BPD and suggests occupational therapy may facilitate meaningful change through occupation-based intervention. Intentional efforts at occupational participation may beneficially address the centrally troubling OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER features of BPD including problematic self-image, self-harm, and risky or disaffirming environments. 38 OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 39 References American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing. Aragones, E., Salvador-Carulla, L., Lopez-Munaner, J., Ferrer, M., & Pinol, J. (2013). Registered prevalence of borderline personality disorder in primary care databases. Graceta Sanitaria, 27(2). Bendics, J.D., Comotis, K.A., Atkins, D.C., & Linehan, M.M. (2012). 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(2015). The experience of sleep for women with OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 45 borderline personality disorder: An occupational perspective. British Journal of Occupational Therapy, 78(12), 750-756. doi: 10.1177/ 0308022615587- 864 Zanarini, M. C., Frankenbur, F. R., Weingeroff, J. L., Reich, D. B., Fitzmaurice, G. M., & Weiss, R. D. (2011). The course of substance use disorders in patients with borderline personality disorder and Axis II comparison subjects: a 10year followup study. Addiction, 106(2), 342-348. OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER Appendix A Figure 1 Resulting Theory 46 OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 47 Table 1 Participant Characteristics - The participant number was used to identify each participant in the study. The MAS numbers are quantitative ways to measure the different areas of metacognition of each participant. MAS S represents self-reflectivity, MAS O represents understanding others minds, MAS D represents decentration, and MAS M represents mastery. Axis I addresses the mental health disorders and Axis III addresses the physical disorders that were co-morbid with the BPD diagnosis. Substance preference shows the substances used by each participant. Participant Number MAS S MAS O MAS D MAS M AXIS I AXI S III Substance Preference Ethnicity Age Sex 26 7 4.5 0 4 Bipolar Type 2 None Alcohol, Cannabis Caucasian 28 M 29 9 5.5 2 7.5 PTSD, Alcohol abuse, anxiety, depression None Alcohol Caucasian 26 M 31 4 3.5 1 4 PTSD, MDE, None Alcohol Caucasian 35 M 33 8 3.5 1 6 PTSD, None Depression, Anxiety, Alcoholism Alcohol Caucasian 44 M 34 8 4 0.5 5 PTSD, Depression, Anxiety COP D None Caucasian 51 M 35 6 4.5 0.5 2 Bipolar, MDD None None Caucasian 54 M 36 6 4.5 0.5 5 MDE None Alcohol Caucasian 53 M 38 6 5 1 4 PTSD, Bipolar, COP D Alcohol Caucasian 62 M OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER 48 MDD, substance dependence 44 6 4 0.5 3 PTSD, Depression None Alcohol, Crack African American 44 M 46 7 5 1.5 4 Major depression, OCD, PTSD None None Caucasian 53 F 47 3.5 2 0 3 Adjustment None disorder, Depression, Anxiety Alcohol Caucasian 38 M 50 7 2 0 4 PTSD, None Anxiety, Depression, Crack cocaine African American 52 M 55 4 3.5 0.5 4 PTSD, depression, anxiety, None Alcohol Caucasian 67 M 57 5 4 0.5 4 None Panc reatic shoc k Alcohol Caucasian 54 M 58 3.5 3 0 3 PTSD, depression None None Caucasian 56 M 65 4 3 0.5 5 Anxiety, Fibro Depression, myal GAD, gia, joint issue s 999 Interracial 49 F 84 6 2 0 3 PTSD, MDD None Alcohol, Downers, Cannabis, Opioids, Cocaine African American 35 M 85 3.5 2 0.5 2 Bipolar II Disorder, None Alcohol, Cocaine, African American 67 M OCCUPATIONAL LIVES AND BORDERLINE PERSONALITY DISORDER PTSD Marijuana 49  ...

... Development of the Occupational Performance Inventory of Sexuality and Intimacy (OPISI): Phase One Kasey Otte, Kelsey LeMond, Pamela Hess, Kandyse Kaizer, Tori Faulkner, and Davis Christy December, 2019 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Beth Ann Walker, PhD, MS, OTR OPISI: PHASE ONE 2 A Research Project Entitled Development of the Occupational Performance Inventory of Sexuality and Intimacy (OPISI): Phase One 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 Kasey Otte, Kelsey LeMond, Pamela Hess, Kandyse Kaizer, Tori Faulkner, and Davis Christy 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: PHASE ONE 3 Acknowledgements We wish to thank Dr. Lori Breeden, Dr. Brenda Howard, and Dr. Katie Polo for their valuable comments and input throughout the preparation of this manuscript. A special thanks to Dr. George Szasz for providing his expertise and advice during the development of OPISI and Dr. Beth Ann Walker, for her commitment, guidance, and enthusiasm throughout this experience. OPISI: PHASE ONE 4 Abstract Background: The profession of occupational therapy is in need of a framework to guide practitioner understanding of the complex occupational nature of sexuality and intimacy, including assessment, intervention design, and measurement of outcomes. The purpose of this study was to define the occupational nature of sexuality and intimacy and develop a theoretical and occupation-based screen, in-depth self-assessment, and performance measure. Method: The Occupational Performance Inventory of Sexuality and Intimacy (OPISI) was developed following DeVelliss (2017) guidelines for scale development which involved mapping the construct, generating an item pool, determining the format for measurement, and review of the initial item pool by a panel of experts. Results: The Occupational Therapy Sexual Assessment Framework (OTSAF) was developed to define the occupational nature of sexuality and intimacy, depict how the theoretical constructs intertwine with the domain of occupational therapy, and guide scale development. The OPISI includes a self-screen, in-depth self-assessment, and an individualized measure to detect self-perceived change in ability, satisfaction, understanding, and confidence in skills and ability to improve occupational performance associated with sexuality and intimacy over time. Conclusion: The OTSAF defines the occupational nature of sexuality and intimacy and informs the scope of practice for occupational therapy. The OPISI includes theoretical and occupation-based tools designed to adequately screen, assess, and measure performance related to the complex occupational nature of sexuality and intimacy. Formal validation is needed prior to releasing the OPISI for clinical use. OPISI: PHASE ONE 5 Development of the Occupational Performance Inventory of Sexuality and Intimacy (OPISI): Phase One Sexuality and intimacy are fundamental aspects of the human experience. According to the World Health Organization (WHO) (2006), sexuality encompasses sex, gender identities and roles, sexual orientation, intimacy, and reproduction; is influenced by the interplay between psychological, biological, social, economical, political, cultural, legal, historical, religious, and spiritual factors; and is expressed in attitudes, values, beliefs, behaviors, practices, roles, and relationships. Given that sexuality contributes to a persons overall health and wellness (Fritz, Dillaway, & Lysack, 2015; Helmes & Chapman, 2012; Stanger, 2009); one can assume that sexuality and intimacy will be affected when health and wellness are compromised by an illness, injury, condition, or life stage (Isler, Beytut, Tas, & Conk, 2009; Lohman, Kobrin, & Chang, 2017; McGrath & Lynch, 2014; Stanger, 2009). Adverse psychological, physiological, and relational consequences have been associated with illness, injury, and disability, and often result in decreased sexual satisfaction, participation, and frequency (Eglseder, Webb, & Rennie, 2018; Richards, Dean, Burgess, & Caird, 2016; Sellwood, Raghavendra, & Jewell, 2017). Societal stigma overshadowing people with disabilities may hinder positive sexual experiences (Elzehiver, 2017; Nilsson, Meyer, Koch, & Ytterberg, 2016; Sakellarious & Sawada, 2006), and internalizing negative stigma and attitudes surrounding disability and sexuality may result in decreased self-image, lower self-esteem, role loss, decreased sexual satisfaction, and depression (Eglseder et al., 2018; Richards et al., 2016; Sellwood et al., 2017). Physical limitations or impaired physiological responses involving muscle and movement functions limit engagement in sexual activities and may contribute to a decline in sexual satisfaction, performance, libido and frequency of erectile dysfunction, and OPISI: PHASE ONE 6 orgasm (Eglseder et al., 2018; McBride & Rines, 2000; McLaughlin & Cregan, 2005; Sakellarious & Sawada, 2006). Relational consequences associated with various conditions and disabilities noted throughout relevant literature include difficulty with initiating, engaging, and maintaining relationships (Sellwood et al., 2017). Additionally, role loss and social isolation may result from the impact of conditions and disabilities on sexuality and intimacy (Esmail, Munro, & Gibson, 2007; Richards et al., 2016). Overall, these consequences cause limitations in sexual satisfaction, performance, and frequency. Occupational therapy (OT) helps people of all ages enhance their ability to independently participate in everyday activities and to reach their maximum level of function through engagement in purposeful interventions (AOTA, 2014; Jones, Weerakoon, & Pynor, 2005). Activities of daily living are defined as all the things people want, need, or have to do, whether of physical, mental, social, sexual, political, or spiritual nature (AOTA, 2014, p. S5). Within the context of human participation and function, sexuality is seen as an expression of occupational performance, which is an integral part of an individuals identity, health status, and self-image (Penna & Sheehy, 2000; Stanger, 2009). Sexuality and intimacy are considered elements of a persons occupational identity (Krantz, Tolan, Pontarelli & Cahill, 2016) regardless of the presence of a disability (Isler et al., 2009) and have long been considered factors that OT practitioners need to address (Novak & Mitchell, 1988). Although many clients identify sexual concerns as major barriers to their occupational performance (Rose & Hughes, 2018; Sakellarious & Sawada, 2006), the lack of education, experience, and comfort in addressing sexual concerns has been associated with brief discussions or a complete disregard of the issue altogether in practice (Areskoug-Josefsson, Larsson, Gard, Rolander, & Juuso, 2016). OPISI: PHASE ONE 7 The PLISSIT model which includes four levels: Permission (P), Limited Information (LI), Specific Suggestions (SS), and Intensive Therapy (IT), provides a systematic approach for determining the different levels of addressing sexuality and intimacy with clients (Annon, 1976). The model serves as a guide for how to request clients permission to address sexual concerns, provide clients with general information about their concerns, give specific suggestions regarding their questions, and refer clients to a specialized therapist (Krantz et al., 2016; McAlonan, 1996; McGrath & Lynch, 2014; Weerakoon et al., 2008). Although the PLISSIT model has been heavily referenced throughout the literature as a technique to resolve conversational discomfort and enhance the clients sexual well-being (McGrath & Lynch, 2014), limitations to its use exist. The focus of the model is to assist practitioners with the discussion, not to solve problems associated with sexuality and intimacy (Rutte et al., 2015). Once permission is granted to discuss aspects of sexuality and intimacy, the client is expected to initiate the conversation, readily identify known deficits in occupational performance, and provide general information about the concerns they feel comfortable addressing (Taylor & Davis, 2007). The profession of OT is in need of a framework to help guide practitioner understanding of the complex occupational nature of sexuality and intimacy, assessment, intervention design, and measurement of performance to determine outcomes (Walker, 2019). Multiple health professions refer to the Sexual Assessment Framework (SAF) for exploring the dynamic sexual needs of clients with a variety of injuries and disabilities (Kokesh, 2016; McBride & Rines, 2000). Dr. George Szasz developed the SAF to guide the assessment of sexual health for individuals with disabilities and was based on seven common themes found across hundreds of concerns noted in extensive interviews with individuals and couples regarding the impact of disability on sexual health in the 1970s (G. Szasz, personal OPISI: PHASE ONE 8 communication, November 28, 2018). The seven primary constructs of the SAF include: sexual knowledge, sexual behavior, sexual self-view, sexual interest, sexual response, fertility and contraception, and sexual activity (McBride & Rines, 2000). Walker (2019) found the SAF to be an effective guide to evaluate and understand the complex occupational nature of sexuality and intimacy. Currently, a theoretical and occupation-based assessment of the complex occupational nature of sexuality and intimacy does not exist. Thus, the purpose of this study was to create a theoretical and occupation-based screen, in-depth self-assessment, and performance measure to address the complex occupational nature of sexuality and intimacy. Methodology The design of this study was informed by DeVelliss (2017) guidelines of scale development and included the following steps: determining what to measure, generating an item pool, determining the format for measurement, and having the initial item pool reviewed by experts (Figure 1). Although the steps are presented here sequentially, the Occupational Therapy Sexual Assessment Framework (OTSAF) evolved throughout the study and the final model was achieved using a grounded theory approach. Step 1: Map the Construct: The Occupational Therapy Sexual Assessment Framework The first step in this process was to map the construct by defining the occupational nature of sexuality and intimacy. Just as the Occupational Therapy Practice Framework (OTPF) serves to describe the core tenets that serve as the foundation for understanding the practice of OT, we have developed the OTSAF to describe the core constructs of the SAF as they intertwine with aspects of the domain of occupational therapy (Table 1). As a result, three SAF constructs were modified to better reflect the tenets of OT. Specifically, the construct Sexual Behavior was renamed Intimacy, and Fertility and Contraception was renamed Sexual Health and Family OPISI: PHASE ONE Planning. The construct of Sexual Self-View was split into Sexual Self-View and Sexual Expression. The resultant model follows a pathway from intrinsic to extrinsic. In sum, client factors serve to influence performance of relevant occupations that occur within an individuals context (Figure 1). Table 1 Occupational Therapy Sexual Assessment Framework Constructs and Definitions Construct Definition Sexual knowledge What a person knows, understands, believes, and values in regards 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 (female, male, other), 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 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. 9 OPISI: PHASE ONE 10 Figure 1 Model for understanding the occupational nature of sexuality and intimacy Note: The Occupational Therapy Sexual Assessment Framework follows a pathway from intrinsic to extrinsic. In sum, a persons client factors, body structures, and body functions influence performance of relevant occupations that occur within an individuals context. ADL = activities of daily living; IADL = instrumental activities of daily living. The person is at the center of the model as it is essential to first gain an understanding of the client factors that reside within a person that influence their perception, experience, and performance related to sexuality and intimacy. Client factors include a persons values, beliefs, spirituality, body functions, and body structures. Sexual knowledge and sexual self-view stem from ones values, beliefs, and spirituality. Sexual knowledge involves a persons understanding of how their condition, disability, illness, or injury may influence their expression of sexuality and participation in intimate activities. Sexual self-view incorporates the personal aspects of sexual identity, gender identity and sexual self-esteem. Just as OT practitioners consider the influence of body functions on performance of occupation, sexual interest and sexual response are considered essential body functions that influence sexual performance. Body structures also OPISI: PHASE ONE 11 play an important in role as they support body function and occupational engagement related to sexuality and intimacy. Once client factors influencing participation as a sexual being are understood, it is important to consider the occupational domains of performance skills and performance patterns. Performance skills include motor, process, and social interaction skills. Motor skills are needed to interact, move, manipulate and position the body during sexual activities. Process skills are needed to identify, select, and follow step-by-step actions aimed toward successful performance of tasks associated with sexuality and intimacy. Social interaction skills serve as the foundation to intimacy and include skills needed during social exchange with partner(s) or potential partner(s). Performance patterns include roles, habits, rituals, and routines that may support or hinder sexual performance and participation. Practitioners need to understand the inherent roles and patterns of behaviors reinforced by values and beliefs associated with how a person perceives themselves as a sexual being. Roles, habits, routines, and rituals are inextricably linked to sexual self-view, sexual identity, and gender identity. The OT practitioner can work with the client to determine whether these performance patterns support or hinder sexual participation and performance. Disruption to performance patterns in an individuals life will affect their ability to participate in intimate and/or sexual activities. Performance patterns are highly individualized which makes sexual participation and intimacy unique to the person. Given a persons capacities, values, beliefs, skills, habits, roles, and routines, the OT practitioner must consider how these factors collectively influence participation in occupations relevant to sexuality and intimacy. Sexual activity is an activity of daily living (ADL) which involves a persons ability to safely engage in sexual and/or intimate activities (alone or with OPISI: PHASE ONE 12 another person). Sexual activities may include hugging, kissing, foreplay, masturbation, oral sex, anal sex, vaginal sex, and use of sexual toys or devices. Occupational therapy practitioners are skilled in analyzing the occupational demands of participating in daily occupations (AOTA, 2014, p. S12) to uncover the specific client factors, performance skills, and performance patterns required to participate in intimate activities such as dressing, undressing, transferring, positioning, hugging, kissing, petting, masturbating, using adult novelty products, or engaging in intercourse. Using, cleaning, and maintaining personal care items such as sexual devices is considered personal device care and is also considered to be an ADL (AOTA, 2014, p. S19). Sexual health and family planning fall under the umbrella of the occupation health management. These occupations play a crucial role as individuals often contemplate their capacity to start a family (Walker, 2019). Occupational therapy practitioners are able to discuss and help individuals gain an understanding of how an individuals capabilities and limitations may influence performance associated with the IADL of child rearing. Similar to the IADL category of religious and spiritual activities and expression, Sexual expression is the way a person communicates or presents themselves as a sexual being. Intimacy is a clear component of the occupation of social participation as it is vital to maintain and initiate relationships with another person (Mcbride & Rines, 2000). Occupational therapy practitioners attend to an individuals involvement in activities that involve intimate interactions with others through texting, phone calls, video conferencing, social media platforms, and dating services, as well as engagement in a wide variety of interactions, displays of affection, and intimacies, which may or may not involve sexual activity (AOTA, 2014, p. S21). If leisure includes exploring and participating in activities that are intrinsically motivating and done in ones free time (AOTA, OPISI: PHASE ONE 13 2014, p. S21), meeting potential partners or going on dates (MacRae, 2013) may also be considered leisure occupations (Penna & Sheehy, 2000). Lastly, OT practitioners should fully understand the context in which their clients sexuality and intimacy occurs to gain insights on their overarching, underlying, and embedded influences on engagement (AOTA, 2014, p. S28). Physical, technological, social, attitudinal, and available services play an essential role in expression of sexuality or engagement in activities relevant to sexuality and intimacy. Physical environments incorporate natural and built surroundings, as well as the objects that are in them. Elements within a persons physical environment that may influence optimal performance in related activities need to be considered. Finally, OT practitioners should pay attention to the social environment of their clients and consider the availability and expectations of those who are significant to the person, such as spouses, friends, and caregivers (AOTA, 2014). Within personal factors of context, ones age, socioeconomic status, gender, and educational status are all part of the way one internally and externally views their sexual identity and how they express themselves. The values and beliefs within ones cultural context dictates accepted sexual practices and norms that influence personal sexual expression, identity, and activity. These factors also influence the availability of ones sexual partners and the avenues in which one has the opportunity to gain sexual knowledge, experience, and activity. The experience of sexuality and intimacy are also shaped by ones temporal context given that perceptions, expectations, participation, and performance change over time and across the lifespan. In todays society, how one interacts, expresses themselves as a sexual being, and participates in activities pertaining to sexuality and intimacy are also heavily influenced by their virtual context, whether through smartphones, computers, or social media. OPISI: PHASE ONE 14 Step 2: Assemble an Item Pool Review of Existing Tools The next task involved in this step included generating an item pool of existing items that address sexuality and intimacy (See Figure 2). This process began with using a deductive approach to generate items based on an exhaustive search of the literature and pre-existing scales (Hinkin, 1995), which revealed 31 relevant scales that addressed components of sexuality and intimacy (Table 2). OPISI: PHASE ONE 15 Table 2 Assessment Tools Reviewed Assessment tool (Reference) DASH Questionnaire (Kennedy et al., 2011) Female Sexual Function Index (FSFI) (Rosen et al., 2000) Functional Analytic Psychotherapy Intimacy Scale (Leonard et al., 2014) Functional Status Questionnaire (FSQ) (Jette et al., 1986) Life-Satisfaction-Questionnaire-9 (LISAT-9) (Fugl-Meyer, Melin, & Fugl-Meyer, 2002) McCoy Female Sexuality Questionnaire (MFSQ) (Rellini et al., 2005) Multidimensional Sexuality Questionnaire (MSQ) (Snell, Fisher, & Walters, 1993) Oswestry Low Back Pain Disability Questionnaire (Alcntara-Bumbiedro et al., 2006) Quality of Sexual Function (QSF) (Heinemann et al., 2005) The Modified Brief Sexual Symptom Checklist for Men (BSSC-M) (Rutte et al., 2015) The Modified Brief Sexual Symptom Checklist for Women (BSSC-W) (Rutte et al., 2015) The Multiple Sclerosis Intimacy and Sexuality Questionnaire (Foley et al., 2013) The Satisfaction with Sex Life Scale (SWSLS) (Neto, 2012). Sex Effect Scale (Sex FX) (Kennedy et al., 2006) Sexual Behavior Questionnaire (SBQ) (Macdonald et al., 2003) Sexual Desire Inventory-2 (SDI-2) (Spector, Carey, & Steinberg, 1996) Sexual Dysfunction Questionnaire (SDQ) (Infrasca, 2011) Sexual Function Questionnaire (SFQ-V1) (Quirk et al., 2002) Sexual Functioning Questionnaire (SFQ) (Smith, OKeene, & Murray, 2002) Sexual Interest and Desire Inventory-Female (SIDI-F) (Sills et al., 2005) Sexual Interest and Satisfaction Scale (Siosteen et al., 1990) Sexuality Questionnaire (Hattjar, 2012) Participation Survey/Mobility (PARTS/M) (Gray et al., 2006) Personal Assessment of Intimacy in Relationship (PAIR-M Questionnaire) (Thriault, 1998) Personal Experience Questionnaire (PEQ) (Dennerstein, Lehert, & Dudley, 2001) Pelvic Organ Prolapse/Incontinence Sexual Questionnaire-International Urogynecology Association Revised (PISQ-IR) (Rogers & Pons, 2013) Psychotropic-Related Sexual Dysfunction Questionnaire (PRSexDQ) (Montejo & RicoVillademoros, 2008) Udvalg for Kliniske Undersogelser Side Effect Rating Scale (UKU) (Lingjaerde et al., 1987) The World Health Organization Quality of Life Questionnaire (WHOQOL-100) (WHOQOL Group, 1998) Quality of Life Enjoyment and Satisfaction Questionnaire-Short Form (Q-LES-Q-SF) (Endicott et al., 1993) According to Henderson (2016), assembly of an item pool should involve collecting and categorizing individual items for each construct from a variety of multiple resources. Items from each scale were analyzed for applicability to the scales purpose (DeVellis, 2017). Items found to OPISI: PHASE ONE 16 be relevant were then categorized depending on which construct of the OTSAF the item best reflected. The initial item pool for the in-depth self-assessment portion of the OPISI consisted of 132 items. Items were then reviewed and modified using terminology consistent with the OTPF and specifically reflect the occupational nature of sexuality and intimacy through the lens of the specific construct (see Appendix). Care was also taken to ensure that items targeted only one attribute, described a measurable behavior, were clear and unambiguous, and of relevance to the target population (Keating, Dalton, & Davidson, 2009). Reduction of items occurred when multiple items reflected the same concept, resulting in one well-constructed item. Given the lack of scales relevant to the occupational nature of sexuality and intimacy, the next step involved a thorough conceptual analysis of the OTPF and the OTSAF to brainstorm possible occupation-based elements necessary for inclusion to adequately assess each construct. See Appendix for sample items created in this process. Conceptual analysis involved examining the OTPF and deciding what occupations, client factors, performance skills, performance patterns, contexts and environments play a role in and possibly affect ones sexuality and intimacy. Items were then generated for each construct until theoretical saturation was achieved. An inductive approach was also applied to generate items based on qualitative information regarding each OTSAF construct (Kapuscinski & Masters, 2010) obtained from interviews with individuals and couples from the target population affected by various conditions such as stroke, spinal cord injuries, and bilateral above-the-knee amputations (Walker, 2019). Following discussions regarding the global nature of the items within the category for sexual knowledge, we decided that these items would serve better as the basis for the screening tool rather than as part of the in-depth self-assessment. OPISI: PHASE ONE 17 Figure 2 Process for item development Inductive approach to generate items until theoretical saturation was achieved Initial Screen: Sexual Knowledge (13) In-depth inventory: Sexual Activity (26), Intimacy (23), Sexual Interest (23), Sexual Response (18), Sexual Self-View (14), Sexual Expression (7), and Sexual Health and Family Planning (11) Step 3: Determine the Format for Measurement The OPISI includes a self-screen (13), in-depth self-assessment (122 possible items), and an individualized measure used by an OT practitioner to detect self-perceived changes in occupational performance associated with sexuality and intimacy over time (28 possible items). The decision to use a screening tool followed by an in-depth self-assessment was informed by the PLISSIT model. The purpose of the initial screen is to assure the client that sex is an appropriate and acceptable topic to be addressed during therapy (permission) and to gather and review information about the client to determine the need for continued evaluation and intervention (AOTA, 2014, as cited in Hinojosa & Kramer, 2014). The in-depth self-assessment was designed to provide a greater understanding of client factors that influence performance of occupations associated with sexuality and intimacy within the clients context. The OT practitioner may elect to issue the complete in-depth self-assessment to the client or tailor the OPISI: PHASE ONE 18 assessment to only include the categories of sexuality and intimacy identified by the client on the screen. The initial screen and in-depth self-assessment utilize a check-all-that-apply format which allows for a wide range of concerns to be covered utilizing a present or absent response approach (Hinojosa & Kramer, 2014) and does not require a high cognitive level of engagement allowing respondents the ability to cover a large number of concerns in less time (Ares et al., 2014). Following a thorough review and discussion of the inventory, for the categories of sexuality and intimacy in which the client had concerns (sexual activity, sexual interest, sexual response, sexual expression, sexual self-view, intimacy, and/or sexual health and family planning), occupational therapists can work with the client to develop goals, plan interventions (Limited Information or Specific Suggestions), and/or make necessary referrals. A 4-item performance measure was designed for each category to quantify the clients perception of occupational performance regarding ability, satisfaction with ability, understanding of how their condition impacts performance, and confidence in their skills and ability to make necessary modifications to improve performance (self-efficacy). The OT practitioner asks the client to rate each of the relevant category of the OTSAF based on their current condition or life circumstance on a scale from 1 (no ability, satisfaction, understanding, or confidence) 10 (highest ability, satisfaction, understanding, or confidence). This calibration process using a Likert-type scale was selected for its utility to measure beliefs, opinions, attitudes and overall quality of life (DeVellis, 2017; Krzych, Lach, Joniec, Cisowski, & Bochenek, 2018; Hinojosa & Kramer, 2014). DeVellis (2017) indicates that the Likert scale can span a wide range of constructs, which allows opportunity for graduations of responses. This adds value to the subjective questionnaire and aids in gaining essential information occupational therapists use for future intervention planning. At OPISI: PHASE ONE 19 follow-up, the client scores each relevant category again to determine if the intervention was effective or if the intervention plan needs to be modified (Hinojosa & Kramer, 2014). Step 4: Initial Pool Review A pilot study on the initial item pool gained perspective from a small sample size of individuals regarding the feasibility and application to a larger scale of audience and gather feedback on modifications needed for future validation (Leon, Davis, & Kraemer, 2011). Thirteen occupational therapists, a physical therapist, and George Szasz, renowned physician and pioneer in sexual medicine who developed the SAF in the 1970s, reviewed the initial item pool. We selected these individuals for their ability to review the overall applicability of the items to the profession of occupational therapy, establish face validity to ensure that items appear to measure the constructs they intend to measure, ensure that items were gender neutral, and that items were not discriminatory. Feedback led to changing the initial screen and in-depth assessment from Likert-type to check-all-that-apply, reordering the presentation of OTSAF constructs, and removal of certain items that did not align well with the OT scope of practice. Items were also modified based on feedback regarding item clarity, gender neutrality, inclusivity, and reading level. Overall, items for the construct Sexual Self-View were noted to be negatively worded and edits were made to better reflect clients sexual self-view concerns in a more positive light. Discussion Aspects of sexuality and intimacy are incorporated in every human beings daily life (Lohman et al., 2017) regardless of the presence of a disability (Isler et al., 2009). Unfortunately, many healthcare practitioners are hesitant to initiate the subject of sexuality due to personal embarrassment and belief that they would embarrass the client and clients do not bring the topic OPISI: PHASE ONE 20 up due to fear of embarrassing the professional (Nilsson et al., 2016). The profession of occupational therapy is in desperate need of a screen, thorough assessment, and performance measure which address the complex occupational nature of sexuality and intimacy. Such tools would serve as effective means for occupational therapists to adequately introduce, assess, and address the complex nature of sexuality and intimacy. The Occupational Therapy Sexual Assessment Framework (OTSAF) was developed using a thorough review and combination of the OTPF and SAF core constructs. This process resulted in a model to depict how the theoretical constructs intertwine with the domain of occupational therapy. Defining the occupational nature of sexuality and intimacy served as the foundation from which to build the comprehensive OPISI. The OTSAF should inform curricular infusion, continuing education, practice guidelines, and day-to-practice. The OPISI was created to comprehensively screen, assess, and measure performance related to the complex occupational nature of sexuality and intimacy following DeVelliss (2017) guidelines for scale development. The following steps taken thus far include: mapping the construct, generating an item pool, determining the format for measurement, and having the initial item pool reviewed by a small panel of experts. The screening tool (13 items) provides an introduction to the topic of sexuality and intimacy, the role of occupational therapy, and items relevant to sexual knowledge. The separate in-depth self-assessment (122 items) is associated with the following constructs of the OTSAF: Sexual Activity (26), Intimacy (23), Sexual Interest (23), Sexual Response (18), Sexual Self-View (14), Sexual Expression (7), and Sexual Health and Family Planning (11) (Figure 2). Once concerns are identified and goals are established, a performance measure is available to detect self-perceived changes in occupational performance associated with sexuality and intimacy over time. OPISI: PHASE ONE 21 Limitations in the development of the OPISI exist. The research team consisted of seven females which inherently produced a level of unavoidable gender bias regardless of attempts to gain diverse opinions and perspectives from male peers and colleagues. Although the OPISI was grounded in theory, evidence, and practice guidelines for occupational therapy, this phase of development was only vetted by a small number of individuals who served on a client-based advisory panel. Conclusion Formal validation of the OPISI is needed to implement this much needed screen, in-depth self-assessment, and performance measure into occupational therapy practice. Now that the occupational nature of sexuality and intimacy has been clearly defined through the development of the OTSAF, a modified Delphi technique would be an appropriate approach to collect expert opinions through consensus to validate the theoretical constructs (Linstone & Turoff, 1975). A modified Delphi technique would also be useful to obtain content validity for the OPISI (Falzarano & Zipp, 2013; Keeney, Hasson, & McKenna, 2011). OPISI: PHASE ONE 22 References Alcntara-Bumbiedro, S., Flrez-Garca, M. T., Echvarri-Prez, C., & Garca-Prez, F. (2006). Oswestry low back pain disability questionnaire. Rehabilitacion-Madrid, 40(3), 150. doi: 10.1016/S0048-7120(06)74881-2. American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). 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Retrieved from: https://www.who.int/reproductivehealth/publications/sexual_health/defining_sexual_heal th.pdf?ua=1 OPISI: PHASE ONE 32 Appendix OPISI Item Development: Sample items Construct Original Item Screen How important is it for you to Sexual participate in intimacy? (Gray et al., Knowledge 2006) Modified/New Original Item Sexuality and intimacy are important aspects of my life How important is sexuality to you now compared to before/after injury? (Siosteen et al., 1990) Rather than talking about sexual activity, Id rather receive handouts or brochures about the topic (Hattjar, 2012) I would like to receive handouts or brochures from the occupational therapist about this topic I have concerns about the overall impact my condition or life stage has on my 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 the use of sexual toys or devices. I have concerns about the overall impact my condition or life stage has on my ability to give and receive affection needed to successfully interact in my role as intimate partner In-Depth Inventory Sexual Activity Does your condition prevent you from My symptoms prevent me from enjoying sexual activities? (Dennerstein enjoying or participating in sexual et al., 2001; Siosteen, A. et al. 1990) activities Do you experience discomfort or pain with penetration during intercourse? (Rosen et al., 2000) I avoid participation in sexual activities that include penetration due to pain I experience difficulty dressing/undressing myself or my partner in preparation for sexual activities OPISI: PHASE ONE 33 I worry about my ability to control my bladder and/or bowel or urinary and/or bowel symptoms during sexual activity Sexual Interest Are you dissatisfied with your desire to engage in sexual behavior with a partner? (Spector, Carey, & Steinberg, 1996) I am dissatisfied with my desire to engage in sexual activities Have you been distressed (worried, concerned, guilty) about your level of sexual desire? (Sills et al., 2005) I worry that my condition interferes with my overall level of sexual interest, drive, or desire Lack of time to participate in sexual activities interferes with my sex drive Lack of sleep interferes with my interest in participating in sexual activities Sexual Response Do you experience difficulty with arousal during sexual activity due to illness/injury ? (Rosen et al., 2000) My bodys physical response associated with sexual activity has changed as a result of my condition and this is a problem Problems with erection (Rutte et al., 2015) I struggle obtaining an erection or maintaining it once I have initiated sexual activity I would like to find other means of experiencing sexual satisfaction to compensate for lack of orgasm I experience delay or difficulty achieving orgasm with masturbation Sexual Expression I am no longer comfortable expressing my sexual identity I worry that I no longer appear as masculine/feminine/other as I would like I do not feel that I am able to fulfill the roles that I associate with my gender identity OPISI: PHASE ONE Sexual Self-View 34 How sexually attractive do you feel you I worry that I am not sexually attractive are to your primary sexual partner? or appealing to my partner(s) or (Rellini et al., 2005) potential partner(s) Over the last 6 months feeling that my body is less attractive have interfered with my sexual activity. (Foley et al., 2013) Over the last 6 months feeling less masculine or feminine due MS have interfered with my sexual activity. (Foley et al., 2013) My condition leaves me feeling less masculine/feminine/other The extent of care and assistance I need leaves me feeling powerless which impacts my sexual self-esteem I feel that my guilt or my partners(s) guilt regarding my condition interferes with our ability to enjoy intimacy and sexual activity Intimacy Are you comfortable discussing significant problems with your partner? (Leonard et al., 2014) I am not comfortable discussing aspects of sexuality and intimacy or my sexual needs with my partner(s) Are you satisfied with your sexual relationships? (Jette et al., 1986) I feel my condition prevents me from being satisfied with my intimate relationship(s) I have difficulty prioritizing or engaging in pleasant, loving, affectionate shared time with my partner(s) I find it difficult to express my sexual interest and desires in a way that my partner(s) understands My ability to understand, access, and use social media platforms to develop intimate relationships is limited OPISI: PHASE ONE Sexual Health and Family Planning I (have) (have not) consented to having sex with someone and regretted it afterward. (Hattjar, 2012) 35 I am concerned about my ability to protect myself from unwanted sexual advances, sexual assault, or rape I do not know how to use, forget to use, or have physical limitations that prevent me from using contraception (including ability to open packaging) as intended to prevent pregnancy or sexually transmitted infections. I feel my ability to provide care and supervision to support the developmental needs of a child may be limited My partner is hesitant to create a family with me because they will take on most of the responsibility Performance Measure Sexual Interest How would you rate your sexual interest, drive, or desire? (Ability) How satisfied are you with your current sexual interest, drive, or desire? (Satisfaction) How would you rate your understanding of how your condition or life stage influences your sexual interest, drive, or desire? (Knowledge) How confident are you in your skills and ability to make necessary changes to improve your sexual interest, drive, or desires? (Self-Efficacy)  ...

... Abstract Background: Having a disability may have a negative impact on a persons experience of sexuality and intimacy (Esmail et al., 2007) and the topic is often excluded in the day to day practice of occupational therapy (Hattjar, Parker, & Lappa, 2008). When sexuality and intimacy are not addressed in rehabilitation, clients with disabilities potentially experience decreased quality of life and overall well-being (Eglseder, Webb, & Rennie, 2018). The Sexual Assessment Framework (McBride & Rines, 2000) serves as a comprehensive guide to understanding the complex nature of sexuality and intimacy for individuals with disabilities. Purpose: The purpose of this study was to explore the experience of intimacy and sexuality of couples following the onset of a disabling injury, using the SAF as a theoretical guide to inquiry. Design: A qualitative phenomenological approach using in-depth semi-structured interviews was used to explore the occupational nature of sexuality and intimacy for two heterosexual couples in which the male partner had sustained a spinal cord injury or bilateral above the knee amputation. Findings: The occupational nature of sexuality and intimacy for the participants was revealed through the themes of sexual knowledge, sexual self-view, sexual interest, sexual response, sexual activity, sexual behavior, and sexual health and family planning. Conclusion: The SAF provided an effective format from which to explore the occupational nature of sexuality. Occupational therapists have the skills to address occupational deficits in sexual knowledge, sexual self-view, sexual interest, sexual response, sexual activity, sexual behavior, sexual health, and family planning. Keywords: sexuality, intimacy, disability, occupational therapy  ...