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... Sexual Health on a University Campus: Occupational Therapy in a Health Promotion Role Emma Rodgers May, 2018 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: Sally Wasmuth, PhD, OTR A Capstone Project Entitled Sexual Health on a University Campus: Occupational Therapy in a Health Promotion Role Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Emma Rodgers 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 Abstract The purpose of this Doctoral Capstone Experience was to provide sexual health resources on a college campus, including providing sexually transmitted infection/disease testing, Title IX and dating education, and sexual assault awareness programs, through an occupational therapy health promotion lens. Students on the University of Indianapolis campus had the opportunity to attend two sexually transmitted infection/disease testing events, Stalking Must Stop event, view a What Were You Wearing? display, and attend Speak About It program. Yearly online Title IX training was condensed into an easy to understand format for the students on campus with intellectual disabilities. An educational session on Title IX, stalking behaviors, and dating was provided to a social skills group for students with Autism. Most programs and events were evaluated using anonymous surveys filled out by the students who attended. The social skills group session was evaluated using the Goal Attainment Scale. The results from student feedback indicate a need for sexual health resources and events on a college campus. Keywords: Occupational Therapy, Sexuality/Sexual Health, Sexual Assault, Health Education Sexual Health on a University Campus: Occupational Therapy in a Health Promotion Role Literature Review The American Occupational Therapy Association (AOTA) Practice Framework (2014) provides an outline describing occupational therapy practice. AOTA (2014) defines activities of daily living (ADLs) as activities that are fundamental to living in a social world; they enable basic survival and well-being. (S19). Sexual activity is categorized as an ADL (AOTA, 2014). Occupational therapy has a role in health promotion as an approach to intervention (AOTA, 2014). Health promotion is defined by AOTA (2014) as, the process of enabling people to increase control over, and to improve, their health (S14). Tavares Gontijo et al. (2015) reason that to have a healthy sexual experience, from an occupation perspective, this also involves responsible sexual behaviors. Thus, occupational therapy can use health promotion and education to contribute to sexual and reproductive health (Tavares Gontijo et al., 2015). The contraction of a sexually transmitted infection (STI) potentially causes emotional, social, and/or financial distress, leading to a decrease in completion or satisfaction of desired occupations (Buhi et al., 2010). Interventions include support groups, educational programs, and stressrelieving activities. Two examples of educational programs are an occupational therapist providing a safe sex program for teenagers or young adults, and providing education for students about the prevalence of STIs on a college campus while also providing opportunity and/or resources for testing (AOTA, 2013). Sexually transmitted infection prevalence According to Habel, Leichliter, and Torrone (2016), There are an estimated 20 million new sexually transmitted infections each year (p. 496). The Center for Disease Control and Prevention (CDC) (2017) state that individuals ages 15-24 only make up one fourth of the United States sexually active population, but it is estimated that half of the new diagnosed STI cases are individuals within this age group. One in four sexually active women, ages 15-24, has an STI (CDC, 2017). The most commonly reported STI in the United States is chlamydia (James, Simpson, & Chamberlain, 2008). Habel et al. (2016) state that chlamydia positivity rates are higher in the sample, taken from college campuses, than the estimated prevalence in the general population. There are an estimated 2.8 million new cases of chlamydia each year, about 48% of which are young adults between the ages of 15-24 (James et al. 2008). The rate of HIV increased for those ages 15-24 who are sexually active between 2007 and 2010, but HIV rates remained the same or declined for all other age groups (Milligan, Cuneo, Rutstein, & Hicks, 2014). The high prevalence rate of STIs among young adults may be due to multiple barriers to accessing services (Lechner, Garcie, Frerich, Lust, & Eisenberg, 2013). Risk factors that affect sexual health outcomes, including unintended pregnancy and contraction of a STI in young adults include, but are not limited to, contraceptive inconsistency, age at first intercourse, age of sexual partners, discussion of birth control, number of sexual partners, non-monogamous relationships, nonromantic partners, alcohol and drug use, social and demographic factors, and family background (Scott et al., 2011). Bailey, Haggerty, White, & Catalano (2011) suggest that from mid adolescence to late adolescence and early 20s, the age of most college students, sexual risk behavior increases and decreases again in the mid-20s. The global HIV/AIDS pandemic needs to be a main priority for academic institutions (Sexuality Information and Education Council of the United States, 2017). Sexual health on college campuses Sexuality Information and Education Council of the United States (SIECUS) (2017), believes, Professionals, including educators, healthcare providers, and social service providers, should promote adolescent sexual health by providing accurate information and education about sexuality, and by assuring access to sexual and reproductive health care (p. 1). A student of Lechner et al. (2013) states, Yeah, theres definitely a need for more sexual education. No one wants to talk about it while youre growing up because youre a kid, but once youre an adult they think you already know it (p. 31). Sexual health is an important part of general health, and college students need and want to be guided and supported by their college campus resources. Students expect colleges to provide resources and information regarding sexual health, but ultimately, it is the students decision to utilize those resources (Lechner et al., 2013). SIECUS (2017) states, Individuals need access to accurate information about HIV/AIDS, as well as evidence-based prevention programs and methods. HIV testing, treatment, and care must be widely accessible and affordable, and only provided with informed consent. (p. 1). Of 451,564 students, from 389 different institutions, approximately one-fourth had never been tested for HIV (Buhi, Marhefka, & Hoban, 2010). James et al. (2008), state potential barriers to STI testing on college campuses, including, reluctance of administrators to accept STI prevalence on their campus, timing conflicts with classes/exam schedules, private space for specimen collection, and coordination with local health departments for treatment. Despite barriers, it is possible to have sustainable, student-run STI and HIV testing completed on college campuses when there is no student health center, or the student health center does not complete STI/HIV testing (Milligan et al., 2014). Milligan and colleagues (2014) offer free, student-run, noninvasive, rapid HIV testing that do not require an appointment in high-traffic pedestrian zones in two institutions student centers on a weekly basis. Most of the students tested, 56%, state that it is their first time completing HIV testing. The number of students receiving testing increased five-fold from the first year to the second year. Both programs are still running to this date (Milligan et al. 2014). Sexual assault awareness The National Sexual Violence Resource Center (NSVRC) (2010) defines sexual assault when, Someone forces or manipulates someone else into unwanted sexual activity without their consent (p. 1). NSVRC (2018) states that one in three women and one in sex men experience some form of sexual assault in their lifetime. According to the NSVRC (2018), 20-25% of college females and 15% of college males are forced into sexual activity and 90% of those victims do not report the assault. Jozkowski and Humphreys (2014) argue that there must be an institutional shift in order to decrease the rates of sexual assault on college campuses. According to Jozkowski and Humphreys (2014), In order to truly address sexual assault on college campuses, institutional changes on rape culture are necessary (p. 34). Johnson, Thomas, Shields, Butcher, and Jemsek state that sexual assault awareness and prevention programs on college campuses can promote healing and decrease stigmas related to sexual assault. Johnson et al. (2016) state, It is important that sexual assault awareness and prevention programs be allowed on campuses so that victims know their rights, understand steps to take next, and acknowledge that they are not to blame (p. 28). Stalking behaviors and dating for individuals with Autism Spectrum Disorder Students who have Autism Spectrum Disorder (ASD) are more likely to engage in stalking behaviors due to displaying characteristics such as, difficulty understanding non-verbal cues, perseverative focus on one person, and inability to fully understand social or legal consequences (Post, Haymes, Storey, Loughrey, & Campbell, 2014). According to Post et al. (2014) one main element of stalking is, harassment involving repetitive, annoying and disturbing behavior directed towards a person that has no positive or legitimate reason other than to harm the person (p. 2698). Post et al. (2014) states that individuals with ASD could engage in stalking behaviors unintentionally, not realizing that their behaviors are being interpreted by others as stalking. Not only can individuals with ASD display stalking behaviors due to these social characteristics, but also difficulty creating intimate relationships (Ward, Atkinson, Smith, & Windsor, 2013). According to Ward and colleagues (2013) those who have ASD are less likely to receive education on sexual health and healthy relationships. Due to these two factors, dating and healthy relationships can be difficult for those individuals with Autism Spectrum Disorder. Health belief model Rosenstock (1974) states that the Health Belief Model focuses on a clients beliefs and how they shape his/her behavior. The model centers on perceived susceptibility, severity, benefit, barriers, and is followed by cues to action. A client, in this case a student, must perceive him/her self as susceptible to sexually transmitted infections (STIs), understand the severity of having an STI, receive some sort of benefit from being tested for STIs, and/or have limited barriers to being tested, whether those be physical, emotional, or financial, in order for the student to seek out testing. If none of these factors occur, the student will be less likely to seek out testing. There must also be a level of readiness, or willingness to be tested, for a change in behavior to occur (Rosenstock, 1974). The same concept applies to the students willingness to be educated on stalking behaviors, dating, and sexual assault awareness. Rosenstock (1974), proposes that programs used to modify behavior or beliefs could focus on only one or more than one factor to facilitate change. The purpose of this Doctoral Capstone Experience was to provide sexual health resources on a college campus, including providing sexually transmitted infection/disease testing, Title IX and dating education, and sexual assault awareness programs, through an occupational therapy health promotion lens. Screening and Evaluation Gaps in service can be identified through a needs assessment (Berkowitz & Reviere, 1997). A needs assessment was conducted through a systematic literature review and an informal interview with a nurse practitioner who works at the University of Indianapolis (UIndy) Student Health Center, the university Title IX coordinator, and the Baccalaureate for University of Indianapolis Learning Disabled (BUILD) coordinator. The key words sextually transmitted infection prevalence, college campuses, sexually transmitted infection testing, autism and stalking, healthy relationships, and sexual assault were used to conduct the literature review. Results from the literature review indicated those ages 15-24 had the highest incidence of contracting a STI. This correlates with the age of most college students. The informal interview with UIndys nurse practitioner revealed that the Student Health Center does not complete STI testing or screening, but that this would be a beneficial service to provide. Currently, the students must be referred to other facilities to receive services related to STI testing. An outside company currently owns the health center. The nurse practitioner stated concerns related to how much advocating power she had to allow these services to be completed at the Student Health Center. The BUILD coordinator runs a social skills group for students on campus who have autism. She expressed the need for stalking and dating education be provided to the social skills group. The University of Indianapolis requires first year students to complete Title IX training, called Haven, before registering for classes. Haven offers education about sexual assault, consent, and bystander intervention. The BUILD coordinator stated concerns that the students on campus with intellectual disabilities are not getting the full benefit of this program due to its length and repetitiveness. She stated that it would be beneficial to condense Haven into clear, easy to understand information. The BUILD social skills session was evaluated using the Goal Attainment Scale. The Goal Attainment Scale is a cooperative goal setting evaluation that uses a numeric index to determine the clients/groups performance (Ottenbacher & Cusick, 1990). According to Ottenbacher and Cusick (1990), The goal attainment scaling system is a flexible set of procedures for the evaluation of an individuals or groups performance in a variety of areas (p. 523). The Title IX coordinator stated the need for evaluating programs and events held on campus to ensure they are beneficial for the students. The Title IX coordinator also expressed the need for event planning and evaluation for Sexual Assault Awareness Month in April. Van der Reyden, Wilson, and White (2017), state that occupational therapists must evaluate effectiveness, efficiency, and the appropriateness of their programs and can do so through the use of a survey. Most events were evaluated through anonymous surveys completed by those who attended them. Existing and emerging areas of occupational therapy practice The advocacy and development of STI testing to be completed is done through a health promotion lens. American Occupational Therapy Association (2015) states, Occupational therapy can play a key role in health promotion to a number of populations (p. 1). If a person was to contract a sexually transmitted infection, this could cause emotional, social, and/or financial distress (Buhi, Marhefka, & Hoban, 2010). This has the potential to decrease satisfaction or completion of desired occupations. Occupational therapists have the education and training to understand the interactions of people, their environment, and the items that need accomplished in their daily lives and how health and well-ness can affect these interactions (AOTA, 2015). According to AOTA (2015), health promotion can be achieved through the promotion of healthy habits and routines. This includes education on having regular STI testing, healthy relationships, and sexual assault awareness. Swanton (2017), states that occupational therapy has a distinct role to play in sexual health education due to sexual activity being listed as an activity of daily living (ADL) in the Occupational Therapy Practice Framework (AOTA, 2014). An occupational therapist can educate students by synthesizing the information in a way that empowers those to not only make educated decision, but also care for their bodies (Swanton, 2017). According to Schaafsma et al. (2014), most healthcare professional do not provide education to their clients because their clients are not sexually active, their clients dont want to be educated and/or they dont have the knowledge and/or skills for it (p. 162). As a health care professional, it cannot be assumed that the client is not sexually active or does not want the education. The health care professional should offer sexual health, healthy relationship, and sexual assault awareness education to the client as he/she would with any other health related topic. An occupational therapist can be the one to provide that education. Implementation Phase Bell Flower Clinic was on the University of Indianapolis campus in the Schwitzer Student Center on February 26th, 2018 and April 19th, 2018 to complete free STI screenings. Bell Flower volunteered their time and funds for the tests; testing equipment was provided by grant sources through Bell Flower. Students completed a registration form before being tested and were also given a survey to complete at the end of testing (see Appendix A). No insurance, photo identification, or appointment was required. Students then had the choice to have their blood drawn, a urine sample taken, their throat swabbed, and/or complete a self vaginal/anal swab depending on the STIs they wished to be tested for. The testing site was near a bathroom for students to complete these steps. Those tested were given a number to call for their results. Those who tested positive for an STI were contacted if they did not call for their results. An interactive lesson on stalking and dating was presented to the University of Indianapoliss social skills group for students on campus with autism. The lesson was an hour long and involved educational concepts of what stalking and dating are, collaborative discussion of appropriate and inappropriate behaviors, and answering any further questions. The group was given a scenario related to further building a friendship with a peer. The group discussed inappropriate behaviors that could be perceived as stalking tendencies, followed by appropriate behaviors that could further develop the friendship. The BUILD coordinator was present during the lesson and provided input when necessary. Haven Title IX training was condensed into an easy to understand format for students on the University of Indianapolis campus with intellectual disabilities. Haven is completed online and takes roughly an hour to complete. The BUILD coordinator completes this training with the students. The online training is not easy to navigate and is repetitive. The information taught in Haven was transferred to a word document, repetitive information was deleted, and it was condensed to the most pertinent information. This information can now be used by the BUILD coordinator to teach the Haven training information without having to complete the program. Title IX coordinated an event called Stalking Must Stop that was held on the University of Indianapolis campus on January 29th. Debbie Riddle shared the story of her sister, Peggy Klinke, who was stalked and murdered by her stalker. She also provided information about stalking and community resources that are available if a student is being stalked. A survey was given to the students before Debbie shared her story (see Appendix B) and was returned at the end of the event to evaluate the effectiveness of having someone speak on the topic of stalking and receive feedback regarding the event. Collaboration with Title IX established several events that were held in April for Sexual Assault Awareness Month. The month kicked off with an opening ceremony to introduce What Were You Wearing. Speakers, such as the University of Indianapoliss president, Title IX coordinator, and Beacon of Hope, a local sexual assault crisis center, representative discussed sexual assault awareness and prevention on campus. What Were You Wearing is a visual display used to acknowledge the fact that a victims clothing choice is irrelevant to an assault case. Clothes matching the description of what survivors were wearing when they were assaulted were hung on black panels and displayed with the description, content warning signs, and End victim blaming. stickers. The start of each display contained Mary Simmerlings poem What I was Wearing, surveys to evaluate the effectiveness of the displays (see Appendix C), and a drop box for completed surveys. Throughout the month of April, ten panels were hung in the Schwitzer Student Center and six panels were hung in the Health Pavilion. The clothing used in the display was donated by various students. Title IX paired with Beacon of Hope to hold this event and a Beacon of Hope representative was stationed in the Schwitzer Student Center Monday-Friday from 8:30 am to 4:30 pm as a resource for students who were triggered by the displays. The University of Indianapolis and Title IX hosted Speak About It on April 9th, 2018. Speak About It was a show in which five actors focused on addressing issues of consent, sexual assault, and bystander intervention. The actors used real-life scenarios for their skits and read off original notecards to keep the authenticity of the stories. Speak About It educated students about University of Indianapolis resources that could be utilized in the event a sexual assault was to happen. Trained representatives from Beacon of Hope were present to provide counseling to any student who was triggered by the performance. A post-show survey (see Appendix D) was handed to all the students who attended at the beginning of the show and was returned at the end. Leadership and staff development I had to be self-driven throughout my doctoral capstone experience (DCE). It has been my responsibility to find and reach out to various community resources or find events that would be beneficial to have on campus. My communication skills have grown immensely throughout this process. I had to provide evidence for the need of these programs on campus, advocate why an occupational therapy student should be doing this, and finalize all the details needed to implement these events. Without displaying leadership skills, these events would not be possible to complete. The nurse practitioner has agreed to advocate for STI testing at the student health center. The number of students who attended the two events provides evidence for the need to have this service available. The post-event surveys will be used to advocate this need to the supervisors. If STI testing becomes available at the student health center, insurance will be required. Some students may be hesitant to be tested due to still being under their parents insurance. The BUILD coordinator has the session outline for the stalking and dating lesson provided to her social skills group. She has stated that she will incorporate this lesson into future groups. Having the outline, she can make changes to the lesson depending on the dynamics of future groups. She also plans to use the condensed Haven training to educate her study skills group about sexual assault, consent, bystander intervention, and resources provided on the UIndy campus. I have educated the University of Indianapolis Title IX coordinator on the need to evaluate programs that she holds on campus to better meet the needs of the students. After receiving student feedback from one event that has been held thus far, she has stated that she would like to continue passing out surveys at her events to receive further feedback. This will help to create more student-centered events in the future. Discontinuation and Outcome Throughout the DCE surveys were used to evaluate effectiveness of the various events held to ensure quality improvement. Anonymous surveys were completed at the end of Stalking Must Stop, both STI testing events, Speak About It, and throughout the What Were You Wearing Display by students who attended these events. About 30 students attended Stalking Must Stop and 16 returned their post survey. Of the students who completed the postevent survey, 100% rated the overall quality of the event as excellent and 15/16 students rated finding this topic useful as excellent, one student did not answer. Half of the students enjoyed that the event was a personal, true story and 31% reported that the event was informative. Most of the students, 62.5%, stated that they would change nothing about the event. The 9:00 p.m. start time, focusing on college campuses more, and needing more people to attend the event were a few suggestions for change recommended by students who completed the survey. The first STI testing event had 78 students attend. Of the students who attended, 41 completed the post-event survey. 97.6% of the students who completed the post-event survey stated that they would attend a testing event again on the University of Indianapolis campus; one participant did not answer. A majority, 58%, of students heard about the event through flyers that were posted on campus, and 70.7% of the students liked the event because it was free, quick, and convenient. One suggestion that students who completed the survey, 53.7%, would change the location of the event due to the small space and wanting privacy. Every student who completed the post-event survey stated that it would be beneficial for the University of Indianapolis Student Health Center to offer STI testing. The second STI testing event had an estimate of 55 students attend and 31 post-event surveys were completed. Most of the students who attended learned about the event through flyers hung on campus or heard about it from a friend. Of those who completed the post-event survey, 93.5 %, stated that they would attend a testing event again on the University of Indianapolis campus. Students stated that they liked the event because it was free and convenient. Several suggestions included changing the location and having more privacy for future testing events. A majority of the students, 96.8%, stated that this service should be provided at the student health center; one student did not respond to this question. Speak About It had an estimate of 50 students attend and 37 post-show surveys were returned. A majority of those who attended rated the learning concepts, understanding healthy relationships, what consent is and is not, and bystander intervention, as excellent and well above average. Of the students who completed the post-show survey, 70.3%, rated this topic as useful and the overall quality of the show as excellent. What Were You Wearing will continue to be displayed throughout the month of April. The results from the surveys only included April 1st through April 19th due to DCE assignment due dates. Of those who completed the survey, all rated that due to this installment they are less likely to blame a rape victim for what he/she was wearing, be less likely to ask a rape victim what he/she was wearing, and be more likely to correct someone blaming a rape victim for what he/she was wearing as excellent. Two surveys had additional comments written on the back. The first stated, This is the most powerful installment Ive seen at UIndy so far. I love this. Its so bothersome and makes people uncomfortable but thats what we need. Thank you. The second stated, Thank you for putting something like this up in the Health Pavilion. In our current social and political climate, I think it is important to have presentation and exhibitions that concern hard topics like rape, and how important victim blaming is, how detrimental it can be. The stalking and dating educational lesson provided to the BUILD social skills group was evaluated using the Goal Attainment Scale (See Appendix E). The group lasted 45 minutes and 11 members were present. All group members participated in discussion. Goal one received a score of +2. The group members were able to identify at least five inappropriate behaviors that could be perceived by others as stalking. A few examples of these behaviors include sending multiple text messages, following someone to class without his/her permission, and checking a persons social media to find out where they are. One participant shared a personal story of when she was displaying stalking behaviors unintentionally. Goal 2 was given a score of +1. The group members were able to collaboratively identify at least five appropriate behaviors that could replace the inappropriate behaviors. These behaviors included asking permission before walking to class with someone and setting boundaries on how any times to text a person or check his/her social media. Goal 3 was not addressed due to time constraints. The feedback received is crucial for the improvement of quality of future events. Using the feedback received in the early events, such as Stalking Must Stop and the first STI testing event, allows for student-centered events. This is also a way to assess if the event would be beneficial to hold in the upcoming years. The Title IX coordinator has reported that the use of surveys will be continued to assess future events. This will ensure that quality improvement will continue once the Doctoral Capstone Experience is completed. Response to societys need The needs stated by faculty on the University of Indianapolis campus included the need for STI testing on campus, an educational session on stalking and dating for the BUILD social skills group, and program development and evaluation for events held by the Title IX coordinator. The large number of students who attended the STI testing event provides evidence that this was not only something that the faculty considered beneficial but was also a need for the students. The students in the social skills group were receptive to the stalking and dating lesson. Many students had stories of their own regarding stalking behaviors that they did not realize were stalking behaviors. Two group members had recently started dating. Other members had expressed interest in dating. The receptiveness of the group provides evidence that not only was this something that the BUILD coordinator considered beneficial but was also a need of the participants in the group. The Title IX coordinator needed to evaluate her programs and events as to better meet the needs of the students. Students responded well to all sexual assault awareness programs put on by Title IX. The comments received about the What Were You Wearing installment proved the need to have these types of programs on a college campus. After Speak About It, students who attended were given the opportunity in a safe place to share their stories or receive the resources that they need. A student talked to the Title IX coordinator privately and received local resources. That student got the help that he needed due to this event. Overall Learning Through Effective Interaction The DCE required effective communication and interaction with site mentors, community resources, students on the University of Indianapolis Campus, and fellow classmates who were also completing their DCE. Site mentors were first contacted through email communication to set up face-to-face meetings. These meetings involved discussing the needs of the site and what could be done to help. Education on what occupational therapy is was provided. Constant contact with site mentors was held throughout the entirety of the Doctoral Capstone Experience to ensure completion of events and projects and to answer any questions or concerns that arose. Community resources, such as Bell Flower and the Marion County Health Department, were contacted to provide various events throughout the DCE. Phone calls were used to discuss event planning. Multiple phone calls were missed and had to be returned at a later time due to poor phone reception in the office. All community resources agreed to converse through email to facilitate better communication. Through email, face-to-face meetings were set up to discuss event needs in detail. Students on the University of Indianapolis campus were communicated with through various forms of advertisement. Flyers were used to advertise for STI testing events. Events were also posted electronically on the university events calendar and on the weekly events email sent to all of the students from the university dean of students. Emails were sent to professors that taught classes related to general health about event being held on campus. The professors then passed along that information to the students in the classes that they were teaching. Contact with peers, who were also completing their Doctoral Capstone Experience, was made weekly through online forum posts. The forum posts allowed for constant communication. Forum posts contained information regarding next steps in completing the capstone, suggestions and resources, and answering questions that any of the peers may have. Appendix A Sexually Transmitted Infection Testing: Post-Testing Survey 1. Would you attend a testing event again on the University of Indianapolis campus? YES NO 2. How did you hear about this testing event?_________________________________________ 3. What is one thing that you liked about this testing event?______________________________ ______________________________________________________________________________ 4. What is one thing that you would change about this testing event? ______________________ ______________________________________________________________________________ 5. Do you think it would be beneficial for the UIndy Student Health Center to offer STI screening? YES NO (please circle) Why or why not? _________________________________ ______________________________________________________________________________ Appendix B Stalking Must Stop: Post-Event Survey Below Average Average Above Well Average Above Excellent Average 1. I know what resources are available 1 2 3 4 5 1 2 3 4 5 3. I found this topic useful 1 2 3 4 5 4. Overall quality of this event 1 2 3 4 5 to me regarding stalking 2. I learned info I had not previously known from attending this event 6. One thing that I enjoyed about this event:__________________________________________ ______________________________________________________________________________ 7. One thing that I would change about this event:______________________________________ ______________________________________________________________________________ Appendix C What Were You Wearing: Post-Installment Survey After viewing this installation, I am: Disagree Slightly Slightly Agree Strongly Disagree Agree 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 Agree 1. Less likely to blame a rape victim for the rape based on what they were wearing. 2. Less likely to ask a rape victim what they were wearing when they were raped. 3. More likely to correct a friend who blames a rape victim for what happened based on what they were wearing. Appendix D Speak About It: Post-Show Survey After viewing this performance: Below Average Average Above Well Average Above Excellent Average 1. I better can state what a healthy 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 4. I found this topic useful. 1 2 3 4 5 5. Overall quality of this event as 1 2 3 4 5 relationship/healthy sex looks like. 2. I have a better understanding of when a person is consenting/not consenting to a sexual activity. 3. I am more likely to intervene in a situation that I think could lead to a sexual assault. Appendix E Goal Attainment Scale for BUILD Social Skills Group Predicted Attainment Score Goal 1: Identifying inappropriate behaviors The group members do not participate in the session. Some group members participate in discussion but can only identify 1 inappropriate behavior. Most unfavorable outcome Less than expected outcome -2 Expected level of outcome 0 The group will be able to collaboratively identify 3 behaviors that could be perceived as stalking by others. Greater than expected outcome +1 The group will be able to collaboratively identify 5 behaviors that could be perceived as stalking by others. Most favorable outcome +2 The group will be able to collaboratively identify 5 behaviors that could be perceived as stalking by others and give real-life scenarios. -1 Goal 2: Identifying appropriate behaviors The group members do not participate in the session. Some group members participate in discussion but can only identify 1 appropriate behavior that could replace the inappropriate behavior. The group members will be able to collaboratively identify 3 appropriate behaviors that could replace the inappropriate behaviors. The group members will be able to collaboratively identify 5 appropriate behaviors that could replace the inappropriate behaviors. The group members will be able to collaboratively identify 5 appropriate behaviors that could replace the inappropriate behaviors and give real-life scenarios. Goal 3: Defining dating and dating etiquette The group members do not participate in the session. Some of the group members participate in discussion but are unable to define what dating is to them. The group members will have a collaborative discussion about the definition of dating and how it is different than other friendships. The group members will have a collaborative discussion about the definition of dating and are able to give examples of what a date would look like. The group members will have a collaborative discussion about the definition of dating, are able to give examples of what a date would look like, and are able to give 1 example of proper dating etiquette. References American Occupational Therapy Association. (2013). Sexuality and the role of occupational therapy. AOTA Fact Sheet. Retrieved from https://www.aota.org/~/media/Corporate/Files/AboutOT/Professionals/WhatIsOT/RDP/F acts/Sexuality.pdf American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). 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College students sexual health: Personal responsibility or the responsibility of the college. Journal of American College Health, 61(1), 28-35. Milligan, C., Cuneo, C. N., Rutstein, S. E., & Hicks, C. (2014). Know Your Status: Results from a novel, student-run HIV testing initiative on college campuses. AIDS Education and Prevention, 26(4), 317-327. NSVRC. (2010). Fact sheet. What is Sexual Violence. Retrieved from https://www.nsvrc.org NSVRC. (2018). Get statistics. Media and Press. Retrieved from https://www.nsvrc.org/statistics Ottenbacher, K. J. & Cusick, A. (1990). Goal attainment scaling as a method of clinical service evaluation. The American Journal of Occupational Therapy, 44(6), 519-525 Post, M., Haymes, L., Storey, K., Loughrey, T., & Campbell, C. (2014). Understanding stalking behaviors by individuals with autism spectrum disorders and recommended prevention strategies for school settings. J Autism Dev Disorder, 44, 2698-2706. Rosenstock, I. M. (1974). The health belief model and preventive health behavior. Health Education Monographs, 2(4), 354-386. Schaafsma, D., Kok, G., Stoffelen, J. M. T., Van Doorn, P., & Curfs, L. M. G. (2014). Identifying the important factors associated with teaching sex education to people with intellectual disability: A cross-sectional survey among paid care staff. Journal of Intellectual & Developmental Disability, 39(2), 157-166. Scott, M. E., Wildsmith, E., Welti, K., Ryan, S., Schelar, E., & Steward-Streng, N. R. (2011). Risky adolescent sexual behaviors and reproductive health in young adulthood. Perspectives on Sexual and Reproductive Health, 43(2), 110-118. SIECUS. (2017). Position statements. Sexuality Information and Education Council of the United States. Retrieved from http://www.siecus.org/index.cfm?pageId=494 Susan, B., & Rebecca, R. (1997). The need for needs assessment. PA Times. p. 12 Swanton, J. (2017). Sexual health education: Developing and implementing a curriculum for adolescents and young adults with intellectual disabilities. OT Practice, 22(19), 14-17. Tavares Gontijo, D., de Sena e Vasconcelos, A. C., Silva Monteiro, R. J., Dutra Facundes, V. L., Cordeiro Trajano, M. F., & Soares de Lima, L. (2016). Occupational therapy and sexual and reproductive health promotion in adolescence: A case study. Occupational Therapy International, 23, 19-28. van der Reyden, D., Wilson, S., & White, B. (2017). The analytical survey method: A valuable tool for efficient and effective occupational therapy service provision for a patient/client population. South African Journal of Occupational Therapy, 47(3), 53-62. Ward, K. M., Atkinson, J. P., Smith, C. A., & Windsor, R. (2013). A friendships and dating program for adults with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 51(1), 22-32.  ...

... SETTING TOLKIEN: EXPLORING MIDDLE-EARTH THROUGH MUSIC COMPOSITION By Jessica G. Spiars An Honors Project submitted to the University of Indianapolis Ron and Laura Strain Honors College in partial fulfillment of the requirements for a Baccalaureate degree with distinction. Written under the direction of Dr. John Berners. March 21, 2017. Approved by: __________________________________________________________________ Dr. John Berners, Faculty Advisor ______________________________________________________________ Dr. James Williams, Interim Executive Director, Ron and Laura Strain Honors College ______________________________________________________________________ First Reader ______________________________________________________________________ Second Reader i Abstract The poetic texts in J.R.R. Tolkien's The Lord of the Rings have provided a wealth of resources to writers and composers since their publishing. Varying in style, character, and idea, these poems and songs offer an inside look of the Middle Earth that Tolkien carefully crafted. Intending to set several of these texts to original music, I studied the life and influences of Tolkien, with the goal of producing a well-developed and thought-out product. My studies covered cultures of both our world and Middle-Earth, including Anglo-Saxon, Finnish, and Welsh. After extensive reading of biographies, analyses, essays, and articles, I developed a cohesive perception of Tolkien's subcreation and chose my texts. With distinctly separate characteristics, my compositions each depict a different culture and approach to music, while displaying my creative choices as a composer. ii Table of Contents Cover Page ............................................................................................................... i Abstract .................................................................................................................. ii Statement of Purpose ...............................................................................................1 Introduction ..............................................................................................................2 Method/Procedure ....................................................................................................3 Analysis/Conclusion ..............................................................................................21 Reflection ...............................................................................................................23 Bibliography ..........................................................................................................24 Appendices.............................................................................................................26 Appendix A: Compositions .......................................................................26 Appendix B: Budget ..................................................................................27 1 Statement of Purpose The purpose of this project was to compose a set of choral art songs based on three of the poems from J. R. R. Tolkien's The Lord of the Rings. As I researched the texts, I chose a poem of the Dwarves, of the Hobbits, and of the Elves. Each of the choral pieces has a distinct set of characteristics specific to the historical and cultural components of their respective people group. The development of this project required historical, biographical, cultural, literary, and ethno-musicological research in order to formulate a well-informed and artistically exciting interpretation. However, I was also careful to give full credence to the value of personal imagination and creativity, in hopes that my project would be completely original and authentic to my compositional style and goals. 2 Introduction "In a hole in the ground there lived a hobbit (The Hobbit 1)." A bored John Ronald Reuel Tolkien wrote this sentence on a lackluster summer day while grading papers as a university professor (Snyder 96). Unbeknownst to him then, that simple sentence would blossom into a fantasy epic that has inspired generations of readers, young and old. The world that J.R.R. Tolkien would craft over the following decades rapidly took on a life of its own, full of wonder, excitement, and adventure. Numerous scholars have devoted their life-work to studying Middle-earth, and yet, there is still a wealth of resources to be discovered and enjoyed. The study of all things Middle-earth has been my occupation for the past several months. From learning about the life of Tolkien and the worldview with which he created his epic, to studying the cultures he created in all their intricacies, to finding personal connections upon which to contribute my own interpretation of his world, this project has been all encompassing and equally as exciting. 3 Method/Procedure The first step in my process was to research the life of J. R. R. Tolkien, with hopes to establish a better understanding of his experiences and influences. There is no lack of resources concerning his life, but I found Humphrey Carpenter's biographical work, Tolkien, especially useful. Christopher Snyder discusses Carpenter's biography, describing it as having "never been surpassed" (Snyder xi). It was through these biographical resources that I began to compile my foundational knowledge of Tolkien, upon which I would later build my own creative work. Born in South Africa in 1892, John Ronald Reuel Tolkien lived there for only three years before returning to England. His mother, Mabel Suffield, was British; his father, Arthur Tolkien, was of German descent, but the events of World War I and World War II eventually minimized his German pride (Snyder 2). Instead, he strongly identified with his mother's Anglo-Saxon heritage and family, the Suffields, with whom the young family lived in Birmingham upon leaving South Africa (Carpenter 20). Regarding his origins, he once stated, "Though a Tolkien by name, I am a Suffield by tastes, talents, and upbringing...and any corner of that country [Worcesterchire] (however fair or squalid) is in an indefinable way 'home' to me, as no other part of the world is (Carpenter 19)." A large component of this occurred through the untimely death of his father and paternal grandfather, which systematically severed his links with the Tolkien family (Carpenter 18). His self-identification as "Suffield" and interest in his Anglo-Saxon roots would play an important role in the future development of his Middle Earth. Several years were spent in Birmingham, till 1896, when Mabel moved the little family to "the hamlet of Sarehole" 4 to live independently of her parents (Carpenter 20). Young Tolkien spent four years in that small cottage, a time he later described as "the longest-seeming and most formative part of my life (Carpenter 24)." During his childhood, Tolkien's mother had nurtured a love of language in him by teaching him foreign languages early on (Snyder 15). Humphrey Carpenter discusses these lessons: "Early in his Sarehole days his mother introduced him to the rudiments of Latin, and this delighted him. He was just as interested in the sounds and shapes of the words as in their meanings, and she began to realise that he had a special aptitude for language. She began to teach him French. He liked this much less, not for any particular reason; but the sounds did not please him as much as the sounds of Latin and English. She also tried to interest him in playing the piano, but without success. It seemed rather as if words took the place of music for him, and that he enjoyed listening to them, reading them, and reciting them, almost regardless of what they meant (22)." This instruction sparked Tolkien's renowned fascination with languages, which quickly became evident during his studies at King Edward's School in Birmingham, where he "became attracted to Old English and Gothic," along with Greek and Latin (Snyder 4). One of his instructors at King Edward's was a medievalist who encouraged his pupils to "use the plain old words of the English language...read Chaucer, and...[recite] the Canturbury Tales...in the original Middle English," inspiring Tolkien to learn more about the language's history (Carpenter 28). Around this time, Tolkien first 5 read the great epic poem, Beowulf, in Old English, which marked the beginning of a lifetime of extensive scholarship on the subject (Snyder 16). Following graduation from King Edward's, Tolkien continued his education at Oxford's Exeter College, studying "Literae Humaniores - the honors course in classics, philosophy, and ancient history...[also including] classical history and philosophy in the original Greek and Latin (Snyder 6)." During this time, Tolkien decided to specialize in comparative philology. Philology, according to Merriam-Webster, is "the study of literature and of disciplines relevant to literature or to language as used in literature; linguistics, especially historical and comparative linguistics; the study of human speech especially as the vehicle of literature and as a field of study that sheds light on cultural history." At that time in the nineteenth century, philology was a highly-esteemed field; now, however, it is largely extinct, having been succeeded by historical comparative linguistics (Snyder 7). His interest in languages perpetually distracted from his classical studies, as he continued learning about Gothic and Middle and Old English. He also additionally began studying Welsh and Finnish, largely due to his first encounter with the Finnish epic, The Kalevala (Snyder 6). The impact The Kalevala had on Tolkien cannot be overstated, specifically in regard to his language inventing. Although he had invented languages from a young age for play with his brother and cousins, his first attempts at constructing what he referred to as a "Gnomish language" was based off of his Finnish studies (Snyder 8, 15). This language would eventually become "Quenya," or High-elven in his fantasy stories (Carpenter 9). His growing fascination with mythology was also closely knit to the Finnish text. Tolkien was aware that England, at one time, had possessed its own threads 6 of mythology, but they had been lost to time and foreign influence (Wainwright 14). Through his studies of the mythologies of other cultures, he began to desire a similar epic for his people (Carpenter 59). Tolkien's studies at Oxford were unhappily interrupted by the battle cries of World War I. Although he did end up joining the British armed forces, the decision was a difficult one (Snyder 7). At this point in his life, he was still enthusiastic about his German ancestry and had added Germanic languages to his many areas of study (Snyder 7). However, his time in the trenches of France turned out to be a formative time for the still-blossoming author, as writing poetry became his pastime and companion. During this time, Tolkien wrote his first poem containing essences of Middle Earth, "The Voyage of arendel the Evening Star." This writing was inspired by several lines from an Old English poem composed by Anglo-Saxon poet Cynewulf in the eighth or ninth century, titled Crist II. The inspirational lines read (in Old English) "Eala Earendel! engla beorhast ofer middengeard monnum sended," which says "Hail Earendel, brightest of angels, over Middle-earth sent to men" when translated into modern English (Snyder 8). According to preeminent Tolkien scholar, Tom Shippey, this poem "[was] the catalyst for Tolkien's 'subcreation' of Middle-earth" (Snyder 8). Christopher Snyder discusses the importance of this poem in his book, The Making of Middle-earth: "From here on, he [Tolkien] would focus his vague ideas about fairies and goblins into a cohesive universe of related tales, imbued with that same Northern spirit captured by Cynewulf, who had given Tolkien a name begging for explanation. arendel the Mariner would become the first hero of Middle-earth, and around his 7 story would grow the great legendarium of which The Lord of the Rings and The Silmarillion are only a part. But in September 1914, the seed of these great works was a poem - a brief forty-eight lines of verse...to which he gave the Old English title 'Scipfreld arendeles fensteorran'... (8)." In his book, J. R. R. Tolkien: Author of the Century, Shippey states that he "remain[s] convinced that Tolkien cannot be properly discussed without some considerable awareness of the ancient works and the ancient world that he tried to revive (Shippey xxvii)." Similarly, Snyder asserts that "the tremendous impact of ancient and medieval cultures upon Tolkien's 'subcreation' [the word Tolkien used to describe "inventing an imaginary secondary world" (Snyder 8)] cannot be dismissed (Snyder 38)." Upon completing my research on Tolkien's life and writings, my next step was to begin to develop a more complete personal knowledge of his people groups as I endeavored to choose my texts to set. By systematically studying and learning about each society, I was able to just that. I have included all three of my compositions in Appendix A. The culture that seemed most common and accessible personally was that of the Hobbits. Clearly modeled after the people of Great Britain, the Shire-folk were closest to Tolkien's own youthful experiences of "simple folk by choice," with "insatiable appetites...apparently dour [and yet] keen on singing, dancing, games, and pastimes...[enjoying] word-games, gifts, and hospitality" (Wainwright 56). While Tolkien understood the word "hobbit" to be "a derivative of Old English hol-bytla, meaning 'hole-dweller,'" despite the fact that the word already existed rarely to mean 8 "goblin" or "brownie" (Wainwright 55). While many authors have discussed the characteristics of Hobbits and their culture, I have found that looking directly at the source can provide a wealth of knowledge: "And what is a Hobbit? Hobbits are little people, smaller than dwarfs. They love peace and quiet and good tilled earth. They dislike machines, but are handy with tools. They are nimble, but don't like to hurry. They have sharp ears and eyes. They are inclined to be fat. They wear bright colors but seldom wear shoes. They like to laugh and eat (six meals a day) and drink. They like parties and they like to give and receive presents" (The Hobbit i). In a letter to an acquaintance, Tolkien described himself as "a hobbit in all but size...I smoke a pipe, [and] have a very simple sense of humor...I do not travel much (Stanton 22)." Simple-minded, unadventurous, unimaginative, easily pleased and entertained, Hobbits were comfortable in the Shire and needed nothing more; for them, "the Shire [was] the world (Stanton 22)." As with all of my texts, I intentionally looked for poems that were described in the books as being indigenous to a culture. My concern was related to cultural impact that seems to be displayed in many of the songs and poems composed by Bilbo and later, Frodo and Sam. As a composer, I am aware of the important role that personal experiences play when creating any kind of artistic product. For me, the adventures of the Hobbits allowed for the potential of a less authentically-Hobbit product. With this in mind, the text that I ended up choosing is from The Fellowship of the Ring, prior to much 9 of the Hobbits' future adventures. It is described as a bath song, and the text goes as follows: Sing hey! for the bath at close of day that washes the weary mud away! A loon is he that will not sing: O! Water Hot is a noble thing! O! Sweet is the sound of falling rain, and the brook that leaps from hill to plain; but better than rain or rippling streams is Water Hot that smokes and steams. O! Water cold we may pour at need down a thirsty throat and be glad indeed; but better is Beer if drink we lack, and Water Hot poured down the back. O! Water is fair that leaps on high in a fountain white beneath the sky; but never did fountain sound so sweet as splashing Hot Water with my feet! As I indicated in my proposal, I have been intentional to avoid listening and studying other musical interpretations of Tolkien's texts in order to prevent an inordinate influence on my compositions. Originally I had intended to set the texts into an art song 10 format, with solo singer and instrumentation. However, as I progressed in the project, I decided instead to set the texts as choral pieces. I felt this was especially suitable for this Hobbit song, as Hobbit culture is over all very communal and group-oriented. In his article, "Making Texts Audible: A Workshop Report on Setting Tolkien to Music," Fabian Geier briefly describes his perception of Hobbit music: "The Hobbits...seem to have an affinity for cheerful, simple melodies. One should be able to learn them without great effort, and they should have "hookline" characteristics to stimulate people to sing along. The task, therefore, is to write quasi-folksongs (Music in Middle-earth, 285)." My own conclusions regarding the characteristics of Hobbit music closely mirror his, and so I purposed to write a piece for SATB that would be simple, upbeat, and enjoyable to sing and listen to. I also worked to craft a melody that would flow easily and follow the natural rhythm of Tolkien's words, without developing an ill-fitting complexity. As a composer, I usually try to avoid a large amount of repetition; however, in this case, I made an exception. As is common with folksongs, much of the appeal is in the sing-ability of the melody and the capability of others to learn it quickly and join in. With this in mind, I decided to utilize a strophic form, using the same basic melody for each verse and similar accompanying figurations within the different voices. In regards to instrumentation, I simplified my original ideas greatly, deciding to use only a flute to fill out the harmonies, as it seemed more fitting contextually than a more complex orchestration. 11 The challenge with a strophic setting is simply that it can become too simple and even boring. Tolkien's text has little variation in rhythm and meter, which can contribute to this problem if only utilizing the original text verbatim. In order to combat this potentiality, I added a short section in the middle, in which the singers get momentarily caught up in their excitement regarding a pint of beer. Harmonically, the lines veer away from the tonic C major into a metaphorical rabbit trail of the dominant key area of G major, aligning with their characteristic limited adventurousness. This portion lasts only a brief four measures, but effectively adds an additional layer of both variety and comedy. I also wanted to capture the atmosphere in which a song like this would have been sung. As is my experience with folk music, when a group of people gathers, there are often a number of participants who whistle, hum, or sing portions of the verses instead of the entirety of the piece. The challenge presented by this is that the originality of these types of participatory components can be lost when specifically notated in the score. To avoid this occurrence, I included written instructions for performers to improvise humming or whistling at certain sections of the piece. This component also served to add variety, as previously discussed. The concept of improvisation has been a reoccurring thought throughout my previous semesters of personal composition study. Throughout the texts of the Lord of the Rings, readers frequently encounter impromptu poems and songs, which support my conclusions to incorporate that component into my setting. One of the challenges I have faced with including improvisatory components in my pieces, however, is the issue of a performer's interpretation differing so widely from my own, as the composer, that it 12 drastically alters my goal for the piece. However, in this situation, I am confident that my inclusion of improvisational material will be subtle enough so as to not distract from the primary idea, but will still contribute positively to achieve a cohesive musical experience. The next people group that I decided to tackle was that of the Dwarves. While Tolkien provides the story of the creation of the Dwarves in The Silmarillion, he does not devote much time to discussion of Dwarf lifestyle and culture in his mythology. However, much can be gleaned by a close reading of Tolkien's texts and also by looking at his sources. In discussing his Dwarves, Tolkien explained: "The 'dwarves' of my legends are far nearer to the dwarfs of Germanic [legends] than are the Elves [of traditional European folklore] but still...different from them...they are not really Germanic 'dwarfs' and I call them 'dwarves' to mark that (Stanton 107)." Despite his assertion that his Dwarves are not entirely akin to the traditional English and Norse mythologies, they are also not entirely different. Many of the names given to the Dwarves by Tolkien were pulled directly from Norse mythology. As in most traditional models, Tolkien's Dwarves are highly skilled in mining and metal work, their abilities extending to little else. Notoriously stubborn-headed and irritable, Dwarves historically maintained a careful distance between the affairs of Elves and Men. Much of their practices remain a mystery, largely due to their subterranean existence and secretive language (Wainwright 40). With these characteristics in mind, I worked to choose my text, settling on the 13 song sang by Gimli while in Moria in The Fellowship of the Ring. Dwarf songs and poems tend to be few and far between in, but the historicity and narrative nature of this poem especially drew me to it. Referred to as "Durin's Song" or "In Moria, In Khazaddum," the entire text reads: The world was young, the mountains The light of sun and star and moon green, In shining lamps of crystal hewn No stain yet on the Moon was seen, Undimmed by cloud or shade of night No words were laid on stream or stone There shone forever fair and bright. When Durin woke and walked alone. There hammer on the anvil smote, He named the nameless hills and dells; There chisel clove, and graver wrote; He drank from yet untasted wells; There forged was blade, and bound was He stooped and looked in Mirrormere, hilt; And saw a crown of stars appear, The delver mined, the mason built. As gems upon a silver thread, There beryl, pearl, and opal pale, Above the shadows of his head. And metal wrought like fishes' mail, Buckler and corslet, axe and sword, The world was fair, the mountains tall, And shining spears were laid in hoard. In Elder Days before the fall Of mighty kings in Nargothrond Unwearied then were Durin's folk; And Gondolin, who now beyond Beneath the mountains music woke: The Western Seas have passed away: The harpers harped, the minstrels sang, The world was fair in Durin's Day. And at the gates the trumpets rang. A king he was on carven throne The world is grey, the mountains old, In many-pillared halls of stone The forge's fire is ashen-cold; With golden roof and silver floor, No harp is wrung, no hammer falls: And runes of power upon the door. The darkness dwells in Durin's halls; 14 The shadow lies upon his tomb In dark and windless Mirrormere; In Moria, in Khazad-dm. There lies his crown in water deep, But still the sunken stars appear Till Durin wakes again from sleep. Out of the three poems, this text was the most challenging for me to work with. The ambiguous and secretive nature of Dwarf culture presented both unique challenges in that I had fewer guidelines upon which to build my piece, but it also allowed for more personal creative license. This ambiguity made it a challenge to determine the dominant cultural influence, leaving my mind cluttered with everything from the comedic dwarves of Disney to the Norwegian spirit of Edvard Grieg's Lyric Pieces to the grandeur of Richard Wagner's Ring Cycle. Another difficulty became evident in the fear of unintentionally imitating other Dwarf song settings, specifically "Misty Mountains" from the new The Hobbit film trilogy. The haunting nature of the melody and character of that piece has become an influential piece of the interpretation of Dwarf music and separating my creative process from it seemed daunting. However, I came to the realization that an external influence is not always negative and that it is through varied external influences that artists are able develop their own individual styles. While I still intentionally worked to produce an original composition, I focused on composing accurately to my ideas, and myself, rather than over-actively avoiding certain "familiar" sounds and ideas. Much of my preparation consisted of reading and re-reading the text both separately and in context, hoping to gain an accurate understanding of the spirit of the piece for myself. Unlike the music of the Elves, little is said in way of description regarding the nature of Gimli's ballad. Tolkien writes that "he [Gimli] rose and standing 15 in the dark began to chant in a deep voice while the echoes ran away into the roof (Fellowship 354)" and after, "having sung his song, [Gimli] would say no more (356)." During my brainstorming process, I was struck by the similar spirit and character that this piece has to the Finnish Kalevala. As this work was a key inspiration to Tolkien, I spent much time researching and listening to readings of various kinds. I was intrigued by the narrative nature of the poem, which reminded me of different types of oral traditions by which cultures have passed down their histories. Tolkien's choice to describe Gimli's words as "chant" also influenced my conclusions (Fellowship 354). For these reasons, I eventually decided to organize my piece in a manner that aligned with these key points combined - by allowing for a majority of the text to be spoken rather than sung. One noticeable change that I made in my setting of the text is the intentional exclusion of a number of verses from the original text. I made this decision after careful thought regarding the cohesiveness of the entire set of pieces. While I wanted each piece to be distinct and different, I also worked to provide a sense of unity between the three. Due to the varying characteristics of each piece, the only component I could vary and actively control is length of pieces. Compared to the other two texts I chose, "Durin's Song" is notably longer. After much consideration, I chose four stanzas to combine into my setting. While this piece would technically be considered a choral piece, I intentionally worked to formulate it as a sort of hybrid with the art song. Arranged for ATB, I have all of the text in a solo bass voice, except for a short section in the middle. The 16 accompanying vocals are composed of predominantly long, held tones, functioning as an ever-shifting and undulating, yet grounded, drone. I decided to only include male voices and low female voices, to represent the low voice with which Gimli sang and the rarity of female Dwarves (Wainwright 40). Again, my instrumentation is simple, with only tubular bells to accompany the voice parts. Simplicity was my goal with this piece, as the Dwarves' skills do not lie in the performing arts. The value of their music rests in the function of the texts - for telling their stories, uniting their people, and providing hope for future generations. Lastly, I faced the challenge of understanding and translating the ethereal qualities of Elven culture. The "first-born of Tolkien's imagination," Elves were "an idealized and elevated version of Men" (Stanton 100-101); Tolkien himself explained that "they really represent Men with greatly enhanced aesthetic and creative faculties, greater beauty and longer life, and nobility...(Stanton 99)." In his book, Tolkien's Mythology for England, Edmund Wainwright describes Tolkien's Elves: "The Elves in The Lord of the Rings are Tolkien's attempt to put these beings back where they belong: at the heart of English myth and legend. In Germanic lore, Elves are shining creatures of immense beauty. Tolkien's Elves were taller than Men and graceful, with dark hair and grey eyes, except for the fair-haired 'golden house of Finrod'. While the Elves of Middle-Earth were powerful and wellintentioned, they were also aloof, dispassionate and suspicious. The Elves were associated most strongly with weaving and carving - 'feminine' skills against the mining and metalworking of the Dwarves. They had a long tradition of poetry, 17 literature, and story-telling...The whiteness of the Elves, their inner luminescence, is also an ancient motif. The world 'Elf' (Old English lf) means 'brilliant, white, shining' (43)." An innate quality that Tolkien imbued into his Elves is the gift of music. Throughout his books, Elves and music are found united as one. The task of composing music to accompany Elven texts is fearsome and seems foolhardy to some, as their music is "explicitly said [to be] superior to all that humans can make in aesthetic regard (Music in Middle-earth 286)." Tolkien's extensive descriptions of Elven music create an even more monumental task. The following passage is one of many that can be found throughout his books. "At first the beauty of the melodies and of the interwoven words in elven-tongues, even though he [Frodo] understood them little, held him in a spell, as soon as he began to attend to them. Almost it seemed that the words took shape, and visions of far lands and bright things that he had never yet imagined opened out before him; and the firelit hall became like a golden mist above seas of foam that sighed upon the margins of the world. Then the enchantment became more and more dreamlike, until he felt that an endless river of swelling gold and silver was flowing over him, too multitudinous for its pattern to be comprehended; it became part of the throbbing air about him, and it drenched and drowned him. Swiftly he sank under its shining weight into a deep realm of sleep (Fellowship 261)." 18 Modern composers can only wish for the mesmerizing qualities innate in Elven music. The task becomes, then, to determine how to best represent that magical music in human terms. In order to find any sort of hope to compose appropriately, I first spent time reading various poems and songs; along with this, I studied Tolkien's own interpretation of Elven music. Tolkien collaborated with Donald Swann as he composed the first authorized setting of Tolkien's poems, "The Road Goes Ever On," specifically on Swann's setting of the Elven poem "Namri". Disliking Swann's original interpretation, Tolkien instead provided a melody with the distinct characteristics of Gregorian chant, the standard liturgical music of the Catholic Church (Middle-earth Minstrel 143). Although still feeling unqualified, I began the search for my text, hoping that connecting to Tolkien's words would provide the needed inspiration. I found myself drawn to the "Hymn to Elbereth Gilthoniel," which is encountered by the Hobbits on several different occasions throughout The Lord of the Rings. Snow-white! Snow-white! O Lady clear! O Queen beyond the Western Seas! O Light to us that wander here Amid the world of woven trees! Gilthoniel! O Elbereth! Clear are thy eyes and bright thy breath! Snow-white! Snow-white! We sing to thee In a far land beyond the Sea. O stars that in the Sunless Year With shining hand by her were sown, 19 In windy fields now bright and clear We see your silver blossom blown! O Elbereth! Gilthoniel! We still remember, we who dwell In this far land beneath the trees, Thy starlight on the Western Seas. The hymn is written in adoration of Varda, the Lady of the Stars, whom the Elves call Elbereth and love above all the godlike Valar - the Holy Ones discussed in The Silmarillion (Snyder 180). While some interpret this song as a "sad walking song," my perception is slightly different. Looking at context, Tolkien introduces the song with High Elves walking near the traveling Hobbits. The group has a conversation with one of the Elves, Gildor, immediately afterwards, in which he laughs and his entire company is cheerful and friendly (Fellowship 89). Along with this, the Lady Elbereth is dearly loved by the Elves and associated with light, power and joy (Snyder 180). For these reasons, I perceive a greater depth of meaning and spirit than simply "sad"; the Hymn to Elbereth is a song of light, adoration, and beauty, and yet, it is tinged with strains of melancholy longing for a time quickly passing away. Once I had worked through these perplexities, I began writing my arrangement. Writing for SAT voices, I decided to include only high voices, in order to emphasize the "feminine" characteristics of Elven culture and song. While I kept Tolkien's ideas regarding Elven music in mind, I did not restrict myself from expressing myself creatively. After much thought, I felt that the piece would be most effective a cappella, in hopes that the interwoven vocal lines would be heard more clearly. For this piece, I paid 20 special attention to the harmonic characteristics, maintaining an overtly tonal sound while incorporating moments of dissonance and resolution. At the end of the piece, I added a short segment of the original Quenya text, returning to a style much more closely resembling the Gregorian chants that Tolkien imagined. While the magical qualities of Elven music are still to be desired, my hope is that I have produced a work that is rich, beautiful, and reminiscent of the sacred past. 21 Analysis/Conclusion As is often the case with creative endeavors, analyzing merit can be challenging. When factoring in personal connection, style, and opinion, much is variable and the potential for differing perceptions is high. However, there are certain areas in which one can evaluate and assess progress and personal development. These areas include the process itself, the product in comparison to the process, and growth as an artist and scholar. In taking a step back and considering the process by which I accomplished my research and compositions, I believe that I was able to find the balance needed in order to learn the necessary information without overwhelming myself. The general topic that I chose has been thoroughly studied for decades and the amount of resources available to me was seemingly endless. Weeding through books, articles, journals, and essays became tedious work, but I found it necessary for success, as the information that was helpful to me was not always clear from titles and summaries. I was systematic in recording relevant and helpful information, in order to allow for a consistently continuing growth of my personal knowledge base. It was only through this foundation that I was able to write pieces that I felt satisfied my original goals. In my compositional process, it was also important to establish a balance between informed decisions based on my research, and decisions based on my personal preferences, ideas, and creativity. This is a balance that I have worked to strike in my artistic endeavors prior to this project, but I feel that I was able to have more success in this case than I have in the past. As an artist, it is only through personal creativity that one 22 can own his or her work, and this is a factor that I did not want to become lost in my search for a Tolkienesque product. Collaboration between research and creativity was necessary, and the outcome of that has been exciting. As I have already made mention of, my personal development and growth as a composer and scholar has been an important result of this project. The unique challenges presented throughout this project have required me to consider and work through problems and questions that I would not have encountered otherwise. The three choral pieces I composed as a result of my studies were my first taste of choral composition and I look forward to continue working in that medium. Despite the progress that I feel I have made thus far through working on my Honors Project, I have also grown to have a greater view of both my potential as a composer and scholar, but also for this project as well. The challenging aspect of music composition is that a composer can always polish and hone his or her pieces, which is what I plan to do with my three compositions. I look forward to their performance in April, as much can be learned about compositional techniques, notation, and overall effectiveness from a live performance. I will also have the opportunity to collaborate with a fellow musician who will be working as conductor for the ensemble. Receiving his interpretations and input will be another area of continuing development. Up until that point, I will continue to edit and critique my work, in hopes of producing the most effective and authentic pieces that I can. It is my hope that my work will be considered an informative and scholarly contribution to the Middle-earth so carefully revealed in Tolkien's writings. 23 Reflection The Honors Project process has been the most challenging accomplishment of my college career. Personally, it has required discipline and perseverance, along with the need to push through walls and ruts that I had unintentionally built up and gotten stuck in. Through this project, I learned how to focus my research and find information quickly; I learned how to push through writer's block, both in the writing of my thesis and composing; I had to push through the limitations I have set on myself due to my life-long struggle with perfectionism. One of the challenges of creative projects is the tendency to require "inspiration" and "mood" in order to be productive. Learning how to work despite lack of inspiration, when nothing sounds right, is a hurdle that all successful creators must vault. Through this project I both faced and conquered that problem, establishing a discipline and work ethic that I had previously only admired in others. In all of these areas, I have challenged myself and come out stronger and with more confidence in myself as a writer and composer. Moving forward, I hope to continue to better myself and develop my talents and abilities, with the goal of widening my experiences and setting high expectations for myself. 24 Bibliography Bloom, Harold. J.R.R. Tolkien's the Lord of the Rings. Philadelphia: Chelsea House, 2000. Brindle, R. S. Musical Composition. Oxford: Oxford University Press, 1986. Carpenter, Humphrey. J.R.R. Tolkien: A Biography. Boston: Houghton Mifflin, 2000. Chance, Jane. Tolkien the Medievalist. London: Routledge, 2003. Dallin, L. Techniques of Twentieth Century Composition; a guide to the materials of modern music. Dubuque, IA: W.C. Brown, 1974. Drout, M. D. J.R.R. Tolkien Encyclopedia: Scholarship and critical assessment. New York, NY: Taylor & Francis Group, 2007. Eden, B. L. Middle-earth Minstrel: Essays on music in Tolkien. Jefferson, NC: McFarland, 2010. Jorgensen, E. R. "Myth, Song, and Music Education: The Case of Tolkien's The Lord of the Rings and Swann's The Road Goes Ever On". The Journal of Aesthetic Education, 40(3), 1-21, 2006. Isaacs, N. D., & Zimbardo, R. A. Tolkien and the Critics; Essays on J.R.R. Tolkien's The Lord of the Rings. Notre Dame: University of Notre Dame Press, 1968. Kocher, P. H. Master of Middle-earth; the fiction of J.R.R. Tolkien. Boston: Houghton Mifflin, 1972. Lnnrot, E.,&Magoun, F. P. The Kalevala, or, Poems of the Kaleva District. Cambridge, MA: Harvard University Press, 1963. Shippey, Tom. J.R.R. Tolkien: Author of the century. Boston: Houghton Mifflin, 2001. Shippey, Tom. The Road to Middle-earth. New York: Houghton Mifflin, 2003. Snyder, Christopher. The Making of Middle-earth: A New Look Inside the World of J. R. R. Tolkien. Sterling, 2013. 25 Stanton, M. N. Hobbits, Elves, and Wizards: Exploring the wonders and worlds of J.R.R. Tolkien's "The Lord of the Rings." New York: St. Martin's Press, 2001. Steimel, H., Tolkien, J. R. R., & Schneidewind, F. Music in Middle-earth. Zurich: Walking Tree, 2010. Tolkien, J. R. R., Carpenter, H., & Tolkien, C. The Letters of J.R.R. Tolkien. Boston: Houghton Mifflin, 1981. Tolkien, J. R. R., & Tolkien, C. The Silmarillion. Boston: Houghton Mifflin, 1983. Tolkien, J. R. R. The Fellowship of the Ring. New York: Ballantine Books, 1973. Tolkien, J. R. R. The Two Towers. New York: Ballantine Books, 1982. Tolkien, J. R. R. The Return of the King. New York: Ballantine Books, 1994. Tolkien, J. R. R. The Hobbit. New York: Ballantine Books, 2001. Tolkien, J. R., & Swann, D. "The Road Goes Ever On: A Song Cycle." Boston: Houghton Mifflin, 1967. Wainwright, Edmund. Tolkien's Mythology for England: A Middle-Earth Companion. Norfolk, England: Anglo-Saxon Books, 2004. 26 Appendices Appendix A: Compositions 27 Appendix B: Budget - Eden, B. L. Middle-earth Minstrel: Essays on music in Tolkien. Jefferson, NC: McFarland, 2010: $26.55 - Snyder, Christopher. The Making of Middle-earth: A New Look Inside the World of J. R. R. Tolkien. Sterling, 2013: $23.96 - Steimel, H., Tolkien, J. R. R., & Schneidewind, F. Music in Middle-earth. Zurich: Walking Tree, 2010: $4.49  ...

... Promotion of Self-Management Skill Development Through an Incentive Driven Home Exercise Program Katherine Zaborowicz May, 2018 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Alison Nichols, OTR, OTD  A Capstone Project Entitled Promotion of Self-Management Skill Development Through an Incentive Driven Home Exercise Program 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 Katherine Zaborowicz Occupational Therapy Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date Running Head: HEP AND SELF-MANGEMENT SKILLS 1 Abstract Individuals with disabilities are at an even greater risk for a lack of physical activity and engaging in health promoting behaviors. Home exercise programs (HEP) have been effective in improving patient outcomes and preventing further disability. The purpose of this doctoral capstone experience (DCE) was to develop an incentive-driven home exercise program in order to facilitate self-management skills among youth and older adults at an outpatient clinic and determine if the program would increase adherence to a HEP. A HEP workbook was created, and an incentive program was tied to the workbook. Therapists distributed the workbooks to clients and supplemented it with materials fit for the individual. Program effectiveness was measured by five therapists through completion of a pre-/post-HEP adherence tracking log. Average HEP adherence pre-program implementation across four weeks was approximately 49.25% while average adherence post-program implementation was 64.96%. Overall HEP adherence at the clinic increased by approximately 15% after one month of program implementation. Therapists reported clients enjoyed the competition and a possibility to win a prize, more clients were bringing in their HEP workbooks, and the clinic benefited from this program. Further investigation is needed to determine whether an incentive-driven HEP program can be effective long-term in improving self-management skill development and increasing client adherence to home programs. HEP AND SELF-MANAGEMENT SKILLS 2 Promotion of Self-Management Skill Development through an Incentive Driven Home Exercise Program According to the Centers for Disease Control and Prevention, seven of the top ten causes of death in the United States were attributed to chronic diseases in 2014 (Centers for Disease Control and Prevention [CDC], 2017b). Factors such as physical inactivity and unhealthy eating not only contribute to the development of obesity, but other related conditions such as cardiovascular disease, diabetes, and cancers (CDC, 2017b). Engaging in regular physical activity throughout the week can decrease the risk of developing certain illnesses. Physical activity and maintaining a healthy weight can help build strong bones, relieve pain, reduce symptoms of anxiety or depression, is associated with fewer hospitalizations, and can improve engagement in functional meaningful activity (CDC, 2007). Recently, there has been a strong shift towards preventative healthcare approaches with a focus on health and wellness. There are a number of different health and wellness initiatives taking place across workplaces, schools, social media, and in the community. The National Wellness Institute (n.d.) defines health and wellness as, . . . an active process through which people become aware of, and make choices toward, a more successful existence. Jirikowic and Kerfeld (2016) reported that children with disabilities were more likely to be sedentary and less likely to engage in health-promoting physical activity than those without disabilities. Children with disabilities are at an even greater risk, as a lack of physical activity can further exacerbate problems leading to immobility and decreased participation (Jirikowic & Kerfeld 2016; Rimmer, Rowland, & Yamaki, 2007). Establishing skills that are related to a physically active lifestyle in childhood translate to a greater adherence to physical activity and exercise in adulthood HEP AND SELF-MANAGEMENT SKILLS 3 (Rimmer, Chen, McCubbin, Drum, & Peterson, 2010). Participation in a home exercise program (HEP) is something that healthcare practitioners often prescribe to help improve patient outcomes and prevent further disability. For children and older adults, a HEP encourages these individuals to take a more active role in the rehabilitation process and facilitates self-management skills. However, non-adherence to HEPs is a common problem that healthcare practitioners face (Medina-Mirapeix et al., 2017). Lambert et al. (2017) reported that approximately 70% of individuals do not follow through with HEPs and that adherence only declines with time. Factors that contribute to non-adherence include the following: low motivation, pain, poor self-efficacy, limited experience with exercise, and decreased social support (Lambert et al., 2017; Medina-Mirapeix et al., 2017). Previous studies have assessed factors such as parent and caregiver involvement and how the exercise is prescribed in relation to adherence to home exercise programs (Basaran, Karadavut, Uneri, Balbaloglu, & Atasoy, 2014; Emmerson, Harding, & Taylor, 2017; Kara & Ntsiea, 2014; Lambert et al., 2017; Lillo-Navarro et al., 2015). Rimmer and Rowland (2008) stated that finding strategies to increase physical activity among children with disabilities is one of the most important challenges that pediatric rehabilitation and healthcare professionals face. There is a need to develop alternative means to help facilitate patient engagement in home exercise programs. The purpose of this doctoral capstone experience (DCE) is to develop an incentive-driven home exercise program in order to facilitate self-management skills among youth and older adults with neuromotor disorders at an outpatient clinic, as well as to determine if the incentive-driven program increases adherence to home exercise program prescription. HEP AND SELF-MANAGEMENT SKILLS 4 Background and Significance In 2008, it was estimated that medical care costs related to obesity was $147 billion in the United States (CDC, 2017b). A majority of health experts agree that physical activity is important to maintain good health and prevent the onset of disease (CDC, 2017b; DeVahl, King, & Williamson 2005; Rimmer, Chen, McCubbin, Drum, & Peterson 2010). The CDC (2017a) defines physical activity as, Any bodily movement that is produced by the contraction of skeletal muscle and that substantially increases energy expenditure (CDC, 2017a, p. 1). Similarly, exercise is a form of physical activity that is planned, structured, and a repetitive bodily movement with the goal to maintain or improve physical fitness (CDC, 2017a). Rehabilitation professionals play an integral role in encouraging increased participation in physical activity through their ability to have direct and relatively consistent contact with family members of those with a disability (Rimmer & Rowland, 2008). For individuals with disabilities, barriers that prevent engagement in physical activity include access, proper instruction, programming, and support (Noerr, 2018; Rimmer & Rowland, 2008). Rimmer and Rowland (2008) suggested setting realistic goals, performance feedback, individualized communication strategies, equipment adaptations, and reinforcement strategies as possible interventions to facilitate effective participation in exercise programs. Further investigation into barriers and facilitators, specifically aspects that are modifiable, can assist healthcare professionals in developing effective health promoting activities. Parent & Caregiver Involvement Clinicians often report non-adherence to home exercise programs from their clients (Basaran et al., 2014; Medina-Mirapeix, 2017; Proffitt, 2016). Children with disabilities are at an even greater risk for low levels of adherence (Basaran et al., 2014; Lillo-Navarro et al., 2015). HEP AND SELF-MANAGEMENT SKILLS 5 Factors that can contribute to non-adherence may include age, marital status, socioeconomic status, severity of the functional limitation, stress, educational status, and employment of the caregiver (Basaran et al., 2014). Active participation of parents during home activity programs is key to successful therapy interventions (Lillo-Navarro et al., 2015). Basaran et al. (2014) found that exhaustion and burnout of caregivers is an important predictor in relation to enabling adherence. The complexity and amount of exercises, presence of pain, and parent/caregiver confidence are other factors that affect follow-through with a home exercise program (Lillo-Navarro et al., 2015). Home exercises that can be easily incorporated into a family daily routine are one means to overcome the challenges related to adherence to a HEP (Lillo-Navarro et al., 2015). HEP Prescription Patients who follow through with their home exercise programs often experience better treatment outcomes (Emmerson, Harding, & Taylor, 2017). Traditionally, home exercise programs are prescribed in a paper handout format with written notes/pictures. Emmerson, Harding, and Taylor (2017) assessed how the mode of delivery of an HEP impacted adherence and functional outcomes among patients who had a stroke and were experiencing upper limb deficits. The use of smart technology was not found to be superior in comparison to traditional methods of HEP delivery (Emmerson, Harding, & Taylor, 2017). In contrast, Lambert et al. (2017) found that home exercise programs that were provided on a technological application with remote support increased patient adherence when compared to paper handouts among those with musculoskeletal conditions. Additionally, Kara and Ntsiea (2015) evaluated whether the inclusion of written and pictorial home exercise prescription impacted adherence to HEP in comparison to no written and pictorial features. Although no significant difference was found, HEP AND SELF-MANAGEMENT SKILLS 6 emotional/physical support from family members or caregivers improved adherence to a home exercise program (Kara & Ntsiea, 2015). Further research in regards to the method of delivery that home exercise programs are prescribed is still needed. Conflicting evidence exists as to whether traditional methods or the use of smart technology is more effective in influencing client adherence with home exercise programs (Emmerson, Harding, & Taylor, 2017; Lambert et al., 2017). Proffitt (2016) examined current occupational therapy practices in regards to the usage, prescription, and clinical reasoning behind home exercise programs. A majority of HEPs span 16-30 minutes daily and focused heavily on preparatory activities that included stretching, active range of motion, and fine motor activities (Proffitt, 2016). However, occupational therapists did not agree in regards to the practices used to implement and progress a HEP. Determining appropriate methods of HEP prescription can facilitate greater adherence among patients with neurological conditions leading to increased functional recovery, improved outcomes, and greater patient satisfaction (Proffitt, 2016). Self-Management Self-management programs have the ability to enhance individual empowerment, promote responsibility for management of the clients current condition, and assist the client in making informed lifestyle decisions (Musekamp, Bengel, Schuler, & Faller 2016). Musekamp et al. (2016) assessed the relationship between participation in a self-management skill development program with quality of life and depression. Greater improvement in selfmanagement skill development was associated with improved long terms outcomes such as quality of life or course of disease (Musekamp et al., 2016). Additionally, Cahill, Polo, Egan, and Marasti (2016) reviewed the current literature in regards to self-management interventions for HEP AND SELF-MANAGEMENT SKILLS 7 children with diabetes. There was large support in regards to parent involvement in selfmanagement interventions for children in order to hold them more accountable. Specifically, parent involvement led to increased adherence to self-management routines, increased use of self-management skills, and increased parents perception in their childs ability to contribute to successful management (Cahill, Polo, Egan, & Marasti, 2016). Role of the Occupational Therapist in Health and Wellness Occupational therapists are skilled in promoting healthy lifestyle changes through their knowledge and understanding of how physical and mental health impact the disease process and performance patterns (Cahill, Polo, Egan, & Marasti, 2016). The Occupational Therapy Practice Framework: Domain and Process, 3rd edition describes how the profession has a unique role in assessing an individuals health management and health maintenance capabilities (American Occupational Therapy Association, 2014). Specifically, occupational therapy (OT) practitioners are trained in developing, managing, and maintaining routines related to overall health and wellness. Occupational therapists have a number of different theoretical models that guide their practice. The focus of the Model of Human Occupation (MOHO) is on the mind/body connection and that motivation and performance of occupations are interconnected (Cole & Tufano, 2008). The MOHO describes function as when an individual can choose, organize, and perform occupations that are personally meaningful (Cole & Tufano, 2008). Being able to target a clients volition and engagement in meaningful activities is what makes occupational therapy unique. In addition to volition, performance capacity and habituation are also core tenets to the MOHO. Understanding ones roles, skills, and abilities can guide occupational therapy practitioners throughout the OT process to help clients develop occupational competence. In the HEP AND SELF-MANAGEMENT SKILLS 8 United States, over 80% of therapists across various practice settings reported using the MOHO in everyday practice (Lee et al., 2012). Cole (2010) described the value of the MOHO in facilitating OT practitioners to better understand clients self-perceptions of their capacity and efficacy before setting physical activity goals and intervention planning. Chen, Neufeld, Feely, and Skinner (1999) assessed patient cooperation and satisfaction with HEPs in relation to the MOHO. Their results supported the role of the MOHOs volitional system, but other factors such as roles and interests did not contribute significantly to compliance with exercise (Chen et al., 1999). Venable, Hanson, Shechtman, and Dasler (2000) further supported the MOHO theory through their findings. Older adults who participated in the occupations of exercise individually or in a group experienced a change in the mind-brain-body performance subsystem results leading to increased independent functioning (Venable et al., 2000). Volition is intrinsic and is sometimes triggered by external rewards. With the creation of a HEP, incentives may have the capability of facilitating adherence. Strohacker, Galarraga, and Williams (2014) defined incentives as a stimulus that is contingent upon the performance of a desired behavior, with the intent of increasing frequency of that behavior. DeVahl, King, and Williamson, (2005) found that for students in a voluntary 12-week exercise program, adherence in the group with greater reward structure was stronger than those without an additional incentive. Additionally, Ngo et al., (2014) evaluated the effectiveness of an incentive-driven intervention to increase the amount of time children spent outdoors. At six months, there was found to be an increase in time spent outdoors by children; however, at the end of the trial there was no significant difference (Ngo et al., 2014). Token economies serve as another means to impact outcomes and have been considered a best practice behavior strategy in the school systems (Soares, Harrison, Vannest, & McClelland, HEP AND SELF-MANAGEMENT SKILLS 9 2016). Soares et al. (2016) described token economies as a secondary reinforcement system whereby items that are essentially neutral are awarded based on the demonstration of desirable behaviors. Token economies have been found to be effective in schools, residential treatment centers, mental health hospitals, prison or detention centers, and colleges (Soares et al., 2016). Soares et al. (2016) described the positive effects token economies have on students with emotional and behavioral problems, intellectual problems, attention deficit hyperactivity disorder, learning disabilities, and schizophrenia. Token economies were associated with positive outcomes in social, behavioral, and academic areas among individuals with autism and developmental disabilities (Soares et al., 2016) in addition to improving work performance, social interactions skills, and daily care skills among individuals with a psychotic disorder (Soares et al., 2016). A systematic review by Strohacker, Galarraga, and Williams (2014) concluded that the effectiveness of reinforcing exercise behavior with material incentives is still unclear and that further research is needed to determine sustainable and effective incentivedriven procedures. Perhaps token economies may serve as another means to target a clients volition for home exercise completion. In designing HEP workbooks, the healthcare practitioner must consider the population/diagnosis, which incentives motivate these individuals, which skills/abilities they possess, and how their habits/roles will impact adherence. Summary of Literature The literature indicates that there are several approaches to consider for fostering the development of self-management skills through a HEP (Basaran et al., 2014; Musekamp et al., 2016; Emmerson, Harding, & Taylor, 2017; Kara & Ntsiea, 2015; Lillo-Navarro et al., 2015). Factors such as parent/caregiver involvement and the means in which the exercise is prescribed can have a direct impact on levels of adherence and the development of self-management skills. HEP AND SELF-MANAGEMENT SKILLS 10 There is a need for healthcare practitioners to re-assess the methods in which HEPs are prescribed for individuals with disabilities. Promoting self-management skills through home exercise programs can help these individuals develop the skills needed to prevent further complications and debility in the future. Based on the literature, parent/caregiver involvement and incentives were incorporated into the home exercise program workbook. Addressing these factors, with the guidance of a skilled interdisciplinary team may lead to increased adherence to HEPs, the development of self-management skills, and overall improved patient outcomes. Screening and Evaluation Before beginning a formal needs assessment, it is important to examine the structure of an organization, condition, and their population to establish a community profile (Scaffa & Reitz, 2010). In some regards, I already had a good knowledge base about my site as I previously worked there as a therapy technician and administrative assistant. However, in order to better understand the dynamics of my site, I explored the clinics website and social media blogs. Based on this exploration, I found in addition to occupational therapy, physical therapy, and speech therapy, the clinic has offered applied behavioral analysis therapy for the past few years. The number of older adults the clinic treats is growing, the staff is expanding, clinic remodels and additions are taking place, there are free monthly knowledge based workshops, and a number of other different initiatives are taking place. In general, occupational therapists are responsible for evaluating and determining the needs of their clients (AOTA, 2014). Scaffa and Reitz (2014) defined a need as a gap in what currently exists and the desired state for a particular group secondary to an identified issue. In regards to this doctoral capstone experience, my client is the outpatient therapy clinic. A needs assessment at the clinic was conducted to identify and prioritize current issues that exist. As a HEP AND SELF-MANAGEMENT SKILLS 11 part of my needs assessment, I conducted informal interviews with some key informants at the clinic, including the chief operations officer/clinical director, assistant clinical director, two occupational therapists, a physical therapist, and the fitness therapist. Some of the potential needs consisted of the following: a parent support group, closed head injury support group for adolescents, education on a sensory diet, parent/caregiver health and wellness, disease management program, and a home exercise workbook program. Throughout the interview process, I also had the opportunity to observe different disciplines and the overall dynamics of the clinic for approximately two weeks. As I collected the data about the needs identified in the interview, I synthesized and analyzed continuously to determine if any commonalities existed. Health and wellness, disease management, and the need for a HEP workbook appeared to be common threads based on the needs assessment and interviews. I then reviewed the current literature I had collected and further investigated the literature through the search all feature in the EBSCOhost database. Before selecting a specific need and presenting it to the clinics stakeholders, I reflected on my own personal vision and how it fits into the clinics mission. Scaffa and Reitz (2014) describe a mission statement as the organizations core and underlying purpose for existence. A mission statement serves as the foundation to guide employees and inform consumers of their intended purpose. This particular clinic . . .is dedicated to improving the lives of children and adults with neuromotor disorders through intensive and unique therapy approaches (Crawl Walk Jump Run Therapy Clinic, 2017). The clinics mission aligns with my own personal passion, which is for health and wellness and assisting others in leading more meaningful lives through engagement in healthy occupations. The clinic strives to educate parents and family members and assist their clients in reaching their maximal functional potential. Based on the data accumulated and its relationship to my passion, I presented the idea HEP AND SELF-MANAGEMENT SKILLS 12 of an HEP workbook to the chief operations officer/clinic director. It was determined that the clinic could benefit from an incentive-driven HEP workbook to foster the development of selfmanagement skills and in turn improve the quality of life for youth and older adults. Before implementing a program, evaluation methods were established to determine the merit, worth, and value of a program (Scaffa & Reitz, 2014). I began a formative evaluation process, which consisted of providing credible and relevant information concerning a programs theoretical framework, design, activities, and operation (Scaffa & Reitz, 2014). The MOHO was the theoretical framework chosen to guide my DCE. The MOHO views occupational performance as a complex dynamic system. A large focus of the MOHO is on an individuals volition, habituation, and mind-brain body performance (Venable et al., 2000). Targeting a clients volition or desire to adhere to a prescribed HEP was important to consider in relation to incentive options. A clients habits and roles must be considered when prescribing HEPs that will be realistic and feasible to incorporate outside of therapy. The mind-brain body connection or an individuals client factors are the driving force in determining what is going to be prescribed in a HEP to enhance occupational performance. The design of the program consisted of developing a HEP workbook with certain activities based on an individual therapists expertise and client-centered principles. In addition to the HEP workbook an incentive program was tied to the workbook to promote adherence. These actions were to assist the clinic in making changes to current HEP prescription to improve patient outcomes, facilitate adherence, and increase therapist productivity by decreasing time spent on HEP development. A qualitative design approach through the use of interviews/surveys, observation, and review of current resources was conducted. By following this process, the information gained will assist clinic stakeholders in making changes that will lead to improved outcomes and future practices. HEP AND SELF-MANAGEMENT SKILLS 13 The use of surveys and questionnaires are common data collection methods to track home exercise program adherence (Basaran et al., 2014; Medina-Mirapeix et al., 2017). In order to further diagnose and measure problems related to HEP adherence among clients at the clinic, several therapists were asked to measure adherence four weeks pre- and post-program implementation. Similar to Medina-Mirapeix et al., (2017), adherence was measured by a ratio of the number of days doing the exercises in the previous week over the number of recommended days per week. During the program planning process, a survey was distributed to different disciplines (OT, PT, SLP) to determine which resources they readily used, opinions on what made adherence to a HEP successful, and their perspective on appropriate/feasible incentives. This screening and evaluation process is similar to what is seen in existing areas of practice when evaluating a individual client. For occupational therapists working in traditional practice settings, they screen their client for needs, further evaluate if necessary, and analyze the information gathered to determine a plan of care (AOTA, 2014). This clinic benefits from having an occupational therapy student completing this project as the profession is grounded in a holistic perspective considering all aspects of the client/organization. Occupational therapists do not simply assess client factors, they assess occupations, performance skills, performance patterns, and the context/environment through which an individual is surrounded (AOTA, 2014). Throughout this HEP workbook and incentive program creation, an interdisciplinary approach was utilized so all aspects of the person and their environment could be considered fully. Interdisciplinary professionals often prescribe home exercise programs to supplement the interventions they provide in the clinic. Depending on the individuals insurance and financial standing, outpatient therapy services may only be provided one or two days a week for a total of 120 minutes. The amount of time a clinician spends with their patient per week is a small portion HEP AND SELF-MANAGEMENT SKILLS 14 of an overall week. Therefore, work outside of therapy, through prescribed home exercise programs, is important to complete to further maximize on the progress made during therapy. Chen et al., (1999) prescribed a home exercise program for sixty-two outpatients at an orthopedic upper extremity facility upon evaluating factors that influenced patient cooperation and satisfaction with HEPs. Results indicated that volition was a key component to compliance to with home exercise programs and that encouraging patients to become actively involved in their treatment was crucial for treatment effectiveness (Chen et al., 1999). Additionally, Bhalerao, and Varadharajulu (2016), studied the effects of a community-based monitored home exercise program in stroke survivors and found significant improvements in motor performance and functional independence in comparison to the control non-monitored group. In addition to outpatient settings, inpatient settings pre- and post-surgery are also taking advantage of home exercise program prescription to improve patient outcomes. Sokk et al., (2017) measured improvements in muscle strength, knee range of motion, and stride length in patients with knee osteoarthritis through a prescribed home exercise program eight weeks prior to total knee arthroplasty (TKA). Statistically significant differences have also been found through HEP prescription twelve months post TKA in regards to improve functional gains (Anneli et al., 2017). Prescribing home exercise programs has been critical to the rehabilitation process and is something that clinicians often take advantage of regardless of what practice setting they work in. Implementation The program planning process began by developing a measure to determine program effectiveness. Three physical therapists, two occupational therapists, and one speech language pathologist tracked current client adherence to the HEPs prescribed for half of their caseload for HEP AND SELF-MANAGEMENT SKILLS 15 four weeks before and four weeks after the implementation of the incentive-driven HEP. Therapists were provided with the option to complete a log of adherence on either a secured Google document or a hard written copy (see Appendix A). During this time, a brief survey was distributed to the interdisciplinary staff in order to gain a better sense of which resources staff were currently utilizing for HEPs, opinions on what makes adherence to a HEP successful, and perspectives on appropriate/feasible incentives (see Appendix B). In order to protect patient information, the surveys and adherence logs did not leave the clinic. These items were kept in the clinic office, which is secured through a password-protected keypad. During the pre-program measuring phase, prior to the start of the incentive-driven HEP program, I had the opportunity to collaborate with the lead therapists of each department, to gather additional information on features for the workbook as well as locate current resources. This included three different meetings with a physical therapist (PT), occupational therapist (OT), and speech language pathologist (SLP). The information from the survey was analyzed, and common themes were established. Therapists expressed that they utilized simple handouts, picture cards, charts to track participation, and internet websites with HEP information. Some common topics addressed in HEPs included the following: reflexes, sensory diets, heavy work, strengthening/endurance exercises, strategies to decrease tactile defensiveness, communication checklists, pre-linguistic skills, and activity of daily living (ADL) skills. There were three common themes that therapists identified that made their clients successful with a HEP: parent participation, parent/client motivation, and activities that were easily incorporated into their daily routines. Therapists identified the following incentives that could increase HEP adherence: physical check-off sheet, HEP AND SELF-MANAGEMENT SKILLS 16 ability to pick a fun activity next session, reward (Goldfish crackers, fruit snacks, etc.), and raffle tickets for a larger prize. Based on information obtained from the surveys and interviews with the lead therapists from each department, the next step consisted of developing the HEP workbook. A thorough review of current departmental HEP resources were analyzed and organized. This included reviewing current OT HEP handouts and collaborating with another OT student who was in the process of organizing the disciplines resources, as well as printing and organizing commonly used SLP handouts. I also held two separate sessions with an SLP and PTA to take pictures of certain HEPs. The clinic had expressed their desire to create their own reflex handouts, and these pictures would be included in them. These additions were made to the departmental HEPs based on therapist feedback and a mock HEP workbook was created. A proposal of estimated startup/yearly costs and a mock HEP workbook was presented to the chief operations officer/clinical director for review. In collaboration with chief operations officer, it was determined that a folder with a weekly planner (see Appendix C) would be incorporated inside the HEP workbook. The HEP workbook would also hold a general welcome letter describing the HEP workbook purpose and incentive program. Therapists would then provide education and specific HEPs of their choosing to supplement the HEP workbook to keep home programming client-centered for each individual. It was determined that if clients were compliant with their prescribed HEPs they could enter their name each week to be selected for a monthly drawing. At the end of the month, a winner would be chosen at random, and they would be deemed the clinics HEP Star of the Month. If consent was provided, this individual would have their picture displayed in the clinic and be able to choose a small prize. HEP AND SELF-MANAGEMENT SKILLS 17 After the owner approved the cost proposal, I collaborated with the office manager to order the HEP Incentive Program supplies. The next step consisted of putting together the HEP workbooks, organizing departmental resources, gathering and staging supplies for the incentive program, and putting together a HEP toolkit bin where resources would be held. Therapists were instructed to provide the HEP workbooks at their discretion to current patients for one month. Any new incoming patients were administered the HEP workbook upon evaluation. Clients were instructed to bring their HEP workbook to each session, and at their last session for the week, their therapist for that day would determine if compliance was met. Leadership and Staff Development In order to facilitate successful service provision with program implementation it was important that I demonstrated effective leadership skills throughout the process. According to the results from the Strengthsfinder 2.0 quiz, discipline, empathy, consistency, positivity, and futuristic were among my top five strengths (Rath, 2017). My futuristic mindset allowed me to partner with certain individuals at the clinic who were also eager to put my vision into motion. This strength allowed me to excel in the area of developing a start-up program. Staying disciplined and consistent during program planning and implementation ensured timelines and objectives were met. Harnessing my passion for health and wellness, as well as demonstrating positivity and enthusiasm throughout the project helped foster a positive context to initiate a new program. Rath (2017) describes positivity as planning highlighted activities where small achievements are turned into events or regular celebrations, which others can look forward to. This idea for action describes the basis of my incentive program. If a client adheres to their prescribed home exercise program, they will have the opportunity to be rewarded and recognized HEP AND SELF-MANAGEMENT SKILLS 18 for their accomplishment. My strengths are common threads and skills that can be seen throughout the program implementation process that enabled me to be successful. In order to facilitate effective service provision of this program a brief in-service was held for staff at the clinic. Services at the clinic are provided on a one-to-one basis, giving therapists the opportunity to individually introduce the HEP workbook to each client and describe how this program could improve outcomes for them. Education was provided on the format of the incentive program, features of the HEP workbook, location of supplies, and any additional questions were addressed at this time. Providing education to staff ensured therapists were confident and competent with the format of the program. It also served as an opportunity for therapists to self-reflect on HEP prescription and encouraged them to be more accountable to continue to provide education to individuals at the clinic. Discontinuation and Outcome Phase In order to measure program effectiveness, it was important that outcome measurements were completed. As a part of my post-program assessment, therapists were asked to track HEP adherence for approximately four weeks after program implementation. Therapists were provided an additional hard copy of the tracking table in the same format as the pre-measurement tracking table and access to a secured Google document depending on their preference. Tracking HEP adherence approximately one month after program implementation allowed for an objective measure on whether the use of an HEP incentive-driven program improved client followthrough. The post-program measurement results allowed the clinic to reassess the format of the program and any future changes that could be made in order to make it more successful. As a result of the incentive-driven HEP program, results pre- and post-program did not indicate substantial significant change in regards to overall adherence to home programs. HEP AND SELF-MANAGEMENT SKILLS 19 Average pre- program was approximately 49.25% adherence for four weeks, while postprogram results indicated roughly 64.96% (Appendix D). Average adherence did trend upward by approximately 15%. However, these results should be interpreted with caution as this was not a formal research study and there was a lack of control by the investigator. The clinic was closed one day during this time period, some clients did not show up for their scheduled treatment or took a break from therapy, and therapists were off certain days which impacted adherence tracking. General feedback was sought from therapists on aspects that went well during the month and things that could be improved upon. Some suggestions for improvement were to have a separate adult incentive program and include a blank table of all exercises that were provided with a check off system. Therapists reported clients enjoyed the competition and possibility of a prize, and more patients were bringing in their folders the month following program start-up. They reported that the HEP incentive program was something that the clinic needed and filled a gap in regards to service delivery. Additionally, as a part of the discontinuation phase, program sustainment was taken into consideration. Scaffa and Reitz (2014) describe sustainment as a crucial component in the program design and implementation. This process involves ongoing evaluation, ongoing service development, program modification to continue to meet the clinics desired needs, and effective marketing (Scaffa & Reitz, 2014). In collaboration with my site mentor, it was determined that a therapy technician would be responsible for keeping track of HEP inventory, assembling workbooks, and organizing supplies for the incentive-driven program. In order to ensure a smooth transition of this process, three meetings were held with the lead individual responsible for program sustainment. In regards to ongoing service development and program modification, HEP AND SELF-MANAGEMENT SKILLS 20 a member of the therapy team would be held responsible secondary to their expertise and skilled training with past program development. Continuous Quality Improvement Continuous quality improvement (CQI) is a management process that assesses the organization of people, equipment, and procedures in place that are set to reproduce a series of intended tasks yielding a desired result (AOTA, 2011). Within CQI, Six Sigma Strategic Planning is a process that has extended into the healthcare setting that aims to eliminate waste and enhance manufacturing process. This strategic planning process was designed to define, measure, analyze, implement, improve, and control (AOTA, 2011). Applying this framework to the incentive-driven home exercise program will allow the outpatient clinic to respond to societys needs accordingly. Within the discontinuation phase, the program resides at the control level of the CQI process. Ideally, the plan is to continue to implement the HEP workbooks along with the incentive-driven HEP program on a long-term basis. However, my time as a DCE student at the clinic only spanned one month after program initiation. It was challenging for me to predict changes and modifications that would need to be made after only one month. Programs terminate for many reasons such as inadequate planning for sustainment, lack of buy-in by the community, and financial barriers (Scaffa & Reitz, 2014). In regards to the HEP incentive program, it was essential that I planned for ongoing program management in order to ensure follow-through. Furthermore, the clinics needs are ever changing, and it is important that they stay current with the changes in society and the surrounding community. Clientele at the clinic dramatically increases in the summer months secondary to children being on summer vacation from school. A lack of community buy-in will also be a large component of the HEP incentive HEP AND SELF-MANAGEMENT SKILLS 21 program to consider. Clients may not be motivated to complete home exercises, they may lose interest in the incentives offered, report lack of time, or they may not find the connection to participate in a HEP meaningful. In addition to these anticipated barriers, responding to staff needs, incorporating evidence-based practice, and having a system to measure quality outcomes throughout the program must be consistently re-evaluated. Although my time may be limited at the clinic, the designated individual in charge of sustainment may consider re-administering the therapist survey, tracking HEP adherence at six months after program start-up, or surveying clients to get feedback about the new program. In order to plan for continuous quality improvement, it was important that I provided the proper education to the designated individuals in charge. A meeting with the lead individual in charge took place to ensure a smooth transition process. The HEP tool kit with all resources regarding program development and sustainment were reviewed. This included the original cost proposal, inventory list, original copies of weekly planners/HEP client instructions, several key interdisciplinary team HEPs, adherence tracking tables for outcome measurements/reassessment, and incentive program materials. Stressing the importance of CQI took place to ensure the program was currently meeting and could continue to meet its intended objectives of improving patient outcomes and quality of life through home exercise program adherence. Home exercise programs are an essential component of the rehab process in an outpatient therapy setting. Changes in healthcare policy and insurance require therapists to be more conscientious as the time they have with clients in an outpatient setting is limited. Many individuals at the clinic may only spend two hours a week at therapy, leaving 166 hours outside of therapy each week. Therapists rely largely on home exercise programs to further supplement their treatment for this very reason. Time spent outside of therapy completing home programs is HEP AND SELF-MANAGEMENT SKILLS 22 equally important in order to improve patient outcomes. Therefore, continuing to re-evaluate effective measures to facilitate adherence through home exercise programs and strategizing on methods to continue to hold therapists more accountable to HEP prescription will improve performance of clients and best practice for the clinic. Overall Learning This doctoral capstone experience (DCE) has been a period of professional development as a future healthcare practitioner. It has allowed me to self-reflect on areas of continued growth and given me the opportunity to take on other roles outside of the traditional occupational therapy student. During my time at the outpatient clinic, my primary focus was on advanced clinical skills with a secondary focus on program development. It was challenging to find a balance between these two entities, but it served as a great opportunity for me to develop skills beyond the entry-level practitioner. Time management, planning, and remaining flexible were skills necessary to succeed in this setting. This experience was highly self-directed and led me to take on more initiative in regards to my learning and needs. Even more, this experience was not structured like a traditional Level II fieldwork placement, in that I had to effectively collaborate and advocate with different disciplines for learning opportunities. This involved preparing my weekly schedule with certain time allocated to different disciplines to learn manual skills for the upper extremity, introduction to neurodevelopmental principles, feeding techniques, sensory integration interventions, etc. Something as simple as making my own weekly schedule involved going through several different avenues and methods of communication between staff and myself. This process started by planning my schedule for the week, getting it approved by my site mentor, inputting the information into the clinics scheduling system, and collaborating with the staff and HEP AND SELF-MANAGEMENT SKILLS 23 therapy technicians to ensure this information was displayed on a daily schedule so therapists were aware if I was co-treating with them on any given day. Additionally, effective and clear communication were essential when it came to articulating my role as a doctoral capstone student to staff at the clinic, colleagues, clients, and their families. A majority of my communication with clients and their families took place orally. However, with the incentive driven HEP program, one of my tasks consisted of developing a letter for clients and their families describing the format of the program. Based on the feedback from my site mentor on the letter, I quickly learned the need to articulate my language to a reading level that would be most appropriate for the given audience at the clinic. It was important that I considered the health literacy of the clinics clientele and how to effectively communicate so that the information I provided on the educational handout would be understood. I found that it is essential to keep in mind who your target audience as well as the means of communication chosen. Furthermore, I learned that there are many different components that go into managing a privately owned outpatient therapy clinic. Being able to work together as a team is an essential skill that all staff at the clinic must demonstrate in order to be successful. Therapists are just one member of the team, and it is important they understand the roles of the other team members to carry out effective services. Providers from all disciplines must come together to collaboratively improve work processes and, in turn, improve patient outcomes (Newhouse & Spring, 2010). Newhouse and Springs (2010) ideal future encompasses health care providers who are educated to deliver patient-centered care in interprofessional teams proficient in evidence-based practice, quality improvement, and informatics solution (Newhouse & Spring, 2010, p. 1). Simply taking advantage of each team members strengths and leadership skills yielded desired HEP AND SELF-MANAGEMENT SKILLS 24 outcomes in everyday practice. Demonstrating effective leadership and advocacy skills also involved having a good understanding of what was within each professions scope of practice and knowing when it was most appropriate to refer to an individual with more expertise. In spite of minimal change between pre- and post- program implementation with regards to overall HEP adherence this experience served as a great learning process. I learned the challenges in getting both staff and clientele on board in launching a new program. It can be difficult to come into an organization and understand their culture within a short time span. I think it is important to set realistic goals for yourself and the program; initially I had hoped that the new program would be 50-75% effective after one month, but it made a change of 15% more adherence. In collaboration with my site mentor, we discussed how the timing of program implementation may have been one factor that impacted adherence results. The clinic has undergone some organizational restructuring changes, and there has been a fair amount of change for staff in regards to employee policies and procedures. Whether or not I am given the opportunity to implement another program in the future or make changes to the HEP program, I would like to conduct more education for staff and clientele. In order to get others on board with a new program, I think it is important the staff are provided the proper education. Overall, I have gained a better understanding on the importance of providing the proper education to individuals on all levels in an organization when implementing organizational changes. This doctoral capstone experience has provided me with the opportunity to develop skills beyond those of the entry-level practitioner. I have had the opportunity to collaborate with a certified orthopedic manual physical therapist on advanced manual skills for the upper extremity, an introduction to neurodevelopmental principles, and exposure to some unique treatment approaches/equipment. This self-directed experience has given me the opportunity to interact HEP AND SELF-MANAGEMENT SKILLS with healthcare professionals and colleagues outside of the rehab team. Continued refinement and learning of clinical skills, exposure to roles and responsibilities of management, and the creation of a program has been an exciting and rewarding experience to enhance the development of the profession and my personal role as a future healthcare practitioner. 25 HEP AND SELF-MANAGEMENT SKILLS 26 References American Occupational Therapy Association. (2011). The occupational therapy manager (5th ed.) Bethesda, MD: AOTA Press. American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. Anneli, H., Nina, S., Arja, H., Mirja, V., Petri, S., Konsta, P., & Jari, Y. (2017). Effect of total knee replacement surgery and postoperative 12-month home exercise program on gait parameters. Gait & Posture, 53, 92-97. Basaran, A., Karadavut, K. I., Uneri, . O., Balbalogu, U, O., & Atasoy, N. (2014). Adherence to home exercise program among caregivers of children with cerebral palsy. Turkish Journal of Physical Medicine & Rehabilitation, 60(2), 85-91. Bhalerao, S., & Varadharajulu, G. (2016). Effect of monitored home exercise program on quality of life in stroke survivors. Indian Journal of Physiotherapy & Occupational Therapy, 10(4), 122-124. doi:10.5958/0973-5674.2016.00132.5 Cahill, S. M., Polo, K. M., Egan, B. E., & Marasti, N. (2016). Interventions to promote diabetes self-management in children and youth: A scoping review. American Journal of Occupational Therapy, 70(5), 7005180020p1-8. doi:10.5014/ajot.2016.021618 Centers for Disease Control and Prevention (2007). Physical activity and good nutrition: Essential elements to prevent chronic diseases and obesity, 2007; 1-4. Doi:10.1037/e599652007-001 Centers for Disease Control and Prevention. (2017a). Adult physical activity information. Retrieved from https://www.cdc.gov/nchs/nhis/physical_activity/pa_glossary.htm HEP AND SELF-MANAGEMENT SKILLS 27 Centers for Disease Control and Prevention. (2017b). Chronic diseases: The leading causes of death and disability in the United States. Retrieved from https://www.cdc.gov/chronicdisease/overview/index.htm Centers for Disease Control and Prevention. (2017c). Obesity fact sheet. Retrieved from http://www.cdc.gov/ncbddd/ disabilityandhealth/documents/obesityfactsheet2010.pdf Chen, C.-Y., Neufeld, E S., Feely, C. A., & Skinner, C. S. (1999). Factors influencing compliance with home exercise programs among patients with upper-extremity impairment. American Journal of Occupational Therapy, 53, 171-180. Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Crawl Walk Jump Run Therapy Clinic. (2017). Retrieved from http://www.crawlwalkjumpruntherapy.com/ DeVahl, J., King, R., & Williamson, J. W. (2005). Academic incentives for students can increase participation in and effectiveness of a physical activity program. Journal of American College Health: J of ACH, 53(6), 295-298. Emmerson, K. B., Harding, K. E., & Taylor, N. F. (2017). Home exercise programmes supported by video and automated reminders compared with standard paper-based home exercise programmes in patients with stroke: A randomized controlled trial. Clinical Rehabilitation, 31(8), 1068-1077. doi:10.1177/0269215516680856 Jirikowic, T. L., & Kerfeld, C. I. (2016). Health-promoting physical activity of children who use assistive mobility devices: A scoping review. American Journal of Occupational Therapy, 70, 7005180050. http://dx.doi.org/10.5014/ajot.2016.021543 Kara, S., & Ntsiea, M. V. (2015). The effect of a written and pictorial home exercise prescription HEP AND SELF-MANAGEMENT SKILLS 28 on adherence for people with stroke. Hong Kong Journal of Occupational Therapy, 26, 33-41. doi:10.1016/j.hkjot.2015.12.004 Lambert, T. E., Harvey, L. A., Avdalis, C., Chen, L. W., Jeyalingam, S., Pratt, C. A., & ... Lucas, B. R. (2017). An app with remote support achieves better adherence to home exercise programs than paper handouts in people with musculoskeletal conditions: A randomized trial. Journal of Physiotherapy, 63(3), 161-167. doi:10.1016/j.jphys.2017.05.015 Lee, S. W., Kielhofner, G., Morley, M., Heasman, D., Garnham, M., Willis, S., & ... Taylor, R. R. (2012). Impact of using the Model of Human Occupation: A survey of occupational therapy mental health practitioners' perceptions. Scandinavian Journal of Occupational Therapy, 19(5), 450-456. doi:10.3109/11038128.2011.645553 Lillo-Navarro, C., Medina-Mirapeix, F., Escolar-Reina, P., Montilla-Herrador, J., GomezArnaldos, F., & Oliveira-Sousa, S. L. (2015). Parents of children with physical disabilities perceive that characteristics of home exercise programs and physiotherapists' teaching styles influence adherence: A qualitative study. Journal of Physiotherapy, 61(2), 81-86. doi:10.1016/j.jphys.2015.02.014 Medina-Mirapeix, F., Lillo-Navarro, C., Montilla-Herrador, J., Gacto-Snchez, M., FrancoSierra, M. ., & Escolar-Reina, P. (2017). Predictors of parents' adherence to home exercise programs for children with developmental disabilities, regarding both exercise frequency and duration: A survey design. European Journal of Physical and Rehabilitation Medicine, 53(4), 545-555. doi:10.23736/S1973-9087.17.04464-1 Musekamp, G., Bengel, J., Schuler, M., & Faller, H. (2016). Improved self-management skills predict improvements in quality of life and depression in patients with chronic disorders. Patient Education and Counseling, 99(8), 1355-1361. doi:10.1016/j.pec.2016.03.022 HEP AND SELF-MANAGEMENT SKILLS 29 National Wellness Institute. (n.d.). The six dimensions of wellness. Retrieved from http://www.nationalwellness.org/?page=Six_Dimensions Newhouse, R. P., & Spring, B. (2010). Interdisciplinary evidence-based practice: moving from silos to synergy. Nursing Outlook, 58(6), 309-317. doi:10.1016/j.outlook.2010.09.001 Ngo, C. S., Pan, C., Finkelstein, E. A., Lee, C., Wong, I. B., Ong, J., & ... Saw, S. (2014). A cluster randomised controlled trial evaluating an incentive-based outdoor physical activity programme to increase outdoor time and prevent myopia in children. Ophthalmic & Physiological Optics: The Journal of the British College of Ophthalmic Opticians (Optometrists), 34(3), 362-368. doi:10.1111/opo.12112 Noerr, K. L. (2018). The influence of assistance in home-based exercise programs for individuals with intellectual disabilities. Dissertation Abstracts International: Section B: The Sciences and Engineering, 78, 10-B(E). Proffitt, R. (2016). Home exercise programs for adults with neurological injuries: A survey. American Journal of Occupational Therapy, 70, 7003290020. http://dx.doi.org/10.5014/ajot.2016.019729 Rath, T. (2017). Strengthsfinder 2.0. New York: Gallup Press. Rimmer, J. H., Chen, M. D., McCubbin, J. A., Drum, C., & Peterson, J. (2010). Exercise intervention research on persons with disabilities: What we know and where we need to go. American Journal of Physical Medicine and Rehabilitation, 89, 249263. http://dx.doi.org/10.1097/PHM.0b013e3181c9fa9d Rimmer, J. H., & Rowland, J. L. (2008). Physical activity for youth with disabilities: A critical need in an underserved population. Developmental Neurorehabilitation, 11, 141148. http://dx.doi.org/10.1080/17518420701688649 HEP AND SELF-MANAGEMENT SKILLS 30 Rimmer, J. H., Yamaki, K., Davis Lowry, B. M., Wang, E., & Vogel, L. C. (2010). Obesity and obesity-related secondary conditions in adolescents with intellectual/developmental disabilities. Journal of Intellectual Disability Research, 54(9), 787-794. Scaffa, M. E. & Reitz, S.M. (2014). Occupational therapy in community based practice settings (2nd ed.). Philadelphia: F.A.Davis. Soares, D. A., Harrison, J. R., Vannest, K. J., & McClelland, S. S. (2016). Effect size for token economy use in contemporary classroom settings: A meta-analysis of single-case research. School Psychology Review, 45(4), 379-399. Sokk, J., Ratsepoo, M., Kums, T., Ereline, J., Haviko, T., Gapeyeva, H., & Paasuke, M. (2017). Motor performance in patients with knee osteoarthritis after 8-week home exercise program. Acta Kinesiologiae Universitatis Tartuensis, 23, 74-85. Strohacker, K., Galarraga, O., & Williams, D. M. (2014). The impact of incentives on exercise behavior: a systematic review of randomized controlled trials. Annals of Behavioral Medicine: A Publication of the Society of Behavioral Medicine, 48(1), 92-99. doi:10.1007/s12160-013-9577-4 Venable, E., Hanson, C., Shechtman, O., & Dasler, P. (2000). The effects of exercise on occupational functioning in the well elderly. Physical & Occupational Therapy in Geriatrics, 17(4), 29-42. HEP AND SELF-MANAGEMENT SKILLS 31 Appendix A. Pre-/Post-Tracking Table e.g.) J.S. Week 1 Week 2 Week 3 Week 4 3/5 2/5 0/5 4/5 Name Name Name Name Name Name Name Name Name Name Name Name Name Name Name *I will be asking you to please track compliance for the same individuals PRE and POST. Feel free to jot down initials or write the name of the client in the first column. This sheet will NOT leave the clinic, once it is collected by the investigator. HEP AND SELF-MANAGEMENT SKILLS 32 Appendix B. Therapist survey Name (optional):__________________ The purpose of this survey is to diagnose problems related to HEP adherence at Crawl Walk. This survey will assist occupational therapy student, Katie Zaborowicz, in her Doctoral Capstone Experience currently titled, Health and wellness among youth and older adults: Promotion of self-management skill development through an incentive driven home exercise program. 1.) What resources do you currently incorporate in your HEP prescription for clients? 2.) For your clients that are successful with a HEP, what makes them successful? 3.) What are some incentives that you feel are appropriate and feasible to provide to increase adherence to a HEP? 4.) Additional thoughts or concerns: HEP AND SELF-MANAGEMENT SKILLS Appendix C. Weekly Planner 33 HEP AND SELF-MANAGEMENT SKILLS 34 Appendix D. Tables Figure 1 HEP Adherence Pre-Program Implementation Average Percent Adherence HEP Adherence Pre-Program Implementation 100% 80% 60% 40% 54.60% 56.40% 20% 41% 45.00% 3 4 0% 1 2 Weeks Figure 1. Therapists (2 DPT, 1 PTA, 1 OTR, and 1 COTA) measured adherence by a ratio of the number of days doing the exercises in the previous week over the number of recommended days per week. The bar graph illustrates average of HEP adherence across four weeks pre program. Figure 2 HEP Adherence Post-Program Implementation Average Percent Adherence HEP Adherence Post-Program Implementation 100% 80% 60% 63.60% 63% 1 2 66% 67.25% 3 4 40% 20% 0% Weeks Figure 2. Therapists (2 DPT, 1 PTA, 1 OTR, and 1 COTA) measured adherence by a ratio of the number of days doing the exercises in the previous week over the number of recommended days per week. The bar graph illustrates average of HEP adherence across four weeks post program.  ...

... Promotion of Self-Management Skill Development Through an Incentive Driven Home Exercise Program Katherine Zaborowicz May, 2018 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Alison Nichols, OTR, OTD  A Capstone Project Entitled Promotion of Self-Management Skill Development Through an Incentive Driven Home Exercise Program 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 Katherine Zaborowicz Occupational Therapy Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date Running Head: HEP AND SELF-MANGEMENT SKILLS 1 Abstract Individuals with disabilities are at an even greater risk for a lack of physical activity and engaging in health promoting behaviors. Home exercise programs (HEP) have been effective in improving patient outcomes and preventing further disability. The purpose of this doctoral capstone experience (DCE) was to develop an incentive-driven home exercise program in order to facilitate self-management skills among youth and older adults at an outpatient clinic and determine if the program would increase adherence to a HEP. A HEP workbook was created, and an incentive program was tied to the workbook. Therapists distributed the workbooks to clients and supplemented it with materials fit for the individual. Program effectiveness was measured by five therapists through completion of a pre-/post-HEP adherence tracking log. Average HEP adherence pre-program implementation across four weeks was approximately 49.25% while average adherence post-program implementation was 64.96%. Overall HEP adherence at the clinic increased by approximately 15% after one month of program implementation. Therapists reported clients enjoyed the competition and a possibility to win a prize, more clients were bringing in their HEP workbooks, and the clinic benefited from this program. Further investigation is needed to determine whether an incentive-driven HEP program can be effective long-term in improving self-management skill development and increasing client adherence to home programs. HEP AND SELF-MANAGEMENT SKILLS 2 Promotion of Self-Management Skill Development through an Incentive Driven Home Exercise Program According to the Centers for Disease Control and Prevention, seven of the top ten causes of death in the United States were attributed to chronic diseases in 2014 (Centers for Disease Control and Prevention [CDC], 2017b). Factors such as physical inactivity and unhealthy eating not only contribute to the development of obesity, but other related conditions such as cardiovascular disease, diabetes, and cancers (CDC, 2017b). Engaging in regular physical activity throughout the week can decrease the risk of developing certain illnesses. Physical activity and maintaining a healthy weight can help build strong bones, relieve pain, reduce symptoms of anxiety or depression, is associated with fewer hospitalizations, and can improve engagement in functional meaningful activity (CDC, 2007). Recently, there has been a strong shift towards preventative healthcare approaches with a focus on health and wellness. There are a number of different health and wellness initiatives taking place across workplaces, schools, social media, and in the community. The National Wellness Institute (n.d.) defines health and wellness as, . . . an active process through which people become aware of, and make choices toward, a more successful existence. Jirikowic and Kerfeld (2016) reported that children with disabilities were more likely to be sedentary and less likely to engage in health-promoting physical activity than those without disabilities. Children with disabilities are at an even greater risk, as a lack of physical activity can further exacerbate problems leading to immobility and decreased participation (Jirikowic & Kerfeld 2016; Rimmer, Rowland, & Yamaki, 2007). Establishing skills that are related to a physically active lifestyle in childhood translate to a greater adherence to physical activity and exercise in adulthood HEP AND SELF-MANAGEMENT SKILLS 3 (Rimmer, Chen, McCubbin, Drum, & Peterson, 2010). Participation in a home exercise program (HEP) is something that healthcare practitioners often prescribe to help improve patient outcomes and prevent further disability. For children and older adults, a HEP encourages these individuals to take a more active role in the rehabilitation process and facilitates self-management skills. However, non-adherence to HEPs is a common problem that healthcare practitioners face (Medina-Mirapeix et al., 2017). Lambert et al. (2017) reported that approximately 70% of individuals do not follow through with HEPs and that adherence only declines with time. Factors that contribute to non-adherence include the following: low motivation, pain, poor self-efficacy, limited experience with exercise, and decreased social support (Lambert et al., 2017; Medina-Mirapeix et al., 2017). Previous studies have assessed factors such as parent and caregiver involvement and how the exercise is prescribed in relation to adherence to home exercise programs (Basaran, Karadavut, Uneri, Balbaloglu, & Atasoy, 2014; Emmerson, Harding, & Taylor, 2017; Kara & Ntsiea, 2014; Lambert et al., 2017; Lillo-Navarro et al., 2015). Rimmer and Rowland (2008) stated that finding strategies to increase physical activity among children with disabilities is one of the most important challenges that pediatric rehabilitation and healthcare professionals face. There is a need to develop alternative means to help facilitate patient engagement in home exercise programs. The purpose of this doctoral capstone experience (DCE) is to develop an incentive-driven home exercise program in order to facilitate self-management skills among youth and older adults with neuromotor disorders at an outpatient clinic, as well as to determine if the incentive-driven program increases adherence to home exercise program prescription. HEP AND SELF-MANAGEMENT SKILLS 4 Background and Significance In 2008, it was estimated that medical care costs related to obesity was $147 billion in the United States (CDC, 2017b). A majority of health experts agree that physical activity is important to maintain good health and prevent the onset of disease (CDC, 2017b; DeVahl, King, & Williamson 2005; Rimmer, Chen, McCubbin, Drum, & Peterson 2010). The CDC (2017a) defines physical activity as, Any bodily movement that is produced by the contraction of skeletal muscle and that substantially increases energy expenditure (CDC, 2017a, p. 1). Similarly, exercise is a form of physical activity that is planned, structured, and a repetitive bodily movement with the goal to maintain or improve physical fitness (CDC, 2017a). Rehabilitation professionals play an integral role in encouraging increased participation in physical activity through their ability to have direct and relatively consistent contact with family members of those with a disability (Rimmer & Rowland, 2008). For individuals with disabilities, barriers that prevent engagement in physical activity include access, proper instruction, programming, and support (Noerr, 2018; Rimmer & Rowland, 2008). Rimmer and Rowland (2008) suggested setting realistic goals, performance feedback, individualized communication strategies, equipment adaptations, and reinforcement strategies as possible interventions to facilitate effective participation in exercise programs. Further investigation into barriers and facilitators, specifically aspects that are modifiable, can assist healthcare professionals in developing effective health promoting activities. Parent & Caregiver Involvement Clinicians often report non-adherence to home exercise programs from their clients (Basaran et al., 2014; Medina-Mirapeix, 2017; Proffitt, 2016). Children with disabilities are at an even greater risk for low levels of adherence (Basaran et al., 2014; Lillo-Navarro et al., 2015). HEP AND SELF-MANAGEMENT SKILLS 5 Factors that can contribute to non-adherence may include age, marital status, socioeconomic status, severity of the functional limitation, stress, educational status, and employment of the caregiver (Basaran et al., 2014). Active participation of parents during home activity programs is key to successful therapy interventions (Lillo-Navarro et al., 2015). Basaran et al. (2014) found that exhaustion and burnout of caregivers is an important predictor in relation to enabling adherence. The complexity and amount of exercises, presence of pain, and parent/caregiver confidence are other factors that affect follow-through with a home exercise program (Lillo-Navarro et al., 2015). Home exercises that can be easily incorporated into a family daily routine are one means to overcome the challenges related to adherence to a HEP (Lillo-Navarro et al., 2015). HEP Prescription Patients who follow through with their home exercise programs often experience better treatment outcomes (Emmerson, Harding, & Taylor, 2017). Traditionally, home exercise programs are prescribed in a paper handout format with written notes/pictures. Emmerson, Harding, and Taylor (2017) assessed how the mode of delivery of an HEP impacted adherence and functional outcomes among patients who had a stroke and were experiencing upper limb deficits. The use of smart technology was not found to be superior in comparison to traditional methods of HEP delivery (Emmerson, Harding, & Taylor, 2017). In contrast, Lambert et al. (2017) found that home exercise programs that were provided on a technological application with remote support increased patient adherence when compared to paper handouts among those with musculoskeletal conditions. Additionally, Kara and Ntsiea (2015) evaluated whether the inclusion of written and pictorial home exercise prescription impacted adherence to HEP in comparison to no written and pictorial features. Although no significant difference was found, HEP AND SELF-MANAGEMENT SKILLS 6 emotional/physical support from family members or caregivers improved adherence to a home exercise program (Kara & Ntsiea, 2015). Further research in regards to the method of delivery that home exercise programs are prescribed is still needed. Conflicting evidence exists as to whether traditional methods or the use of smart technology is more effective in influencing client adherence with home exercise programs (Emmerson, Harding, & Taylor, 2017; Lambert et al., 2017). Proffitt (2016) examined current occupational therapy practices in regards to the usage, prescription, and clinical reasoning behind home exercise programs. A majority of HEPs span 16-30 minutes daily and focused heavily on preparatory activities that included stretching, active range of motion, and fine motor activities (Proffitt, 2016). However, occupational therapists did not agree in regards to the practices used to implement and progress a HEP. Determining appropriate methods of HEP prescription can facilitate greater adherence among patients with neurological conditions leading to increased functional recovery, improved outcomes, and greater patient satisfaction (Proffitt, 2016). Self-Management Self-management programs have the ability to enhance individual empowerment, promote responsibility for management of the clients current condition, and assist the client in making informed lifestyle decisions (Musekamp, Bengel, Schuler, & Faller 2016). Musekamp et al. (2016) assessed the relationship between participation in a self-management skill development program with quality of life and depression. Greater improvement in selfmanagement skill development was associated with improved long terms outcomes such as quality of life or course of disease (Musekamp et al., 2016). Additionally, Cahill, Polo, Egan, and Marasti (2016) reviewed the current literature in regards to self-management interventions for HEP AND SELF-MANAGEMENT SKILLS 7 children with diabetes. There was large support in regards to parent involvement in selfmanagement interventions for children in order to hold them more accountable. Specifically, parent involvement led to increased adherence to self-management routines, increased use of self-management skills, and increased parents perception in their childs ability to contribute to successful management (Cahill, Polo, Egan, & Marasti, 2016). Role of the Occupational Therapist in Health and Wellness Occupational therapists are skilled in promoting healthy lifestyle changes through their knowledge and understanding of how physical and mental health impact the disease process and performance patterns (Cahill, Polo, Egan, & Marasti, 2016). The Occupational Therapy Practice Framework: Domain and Process, 3rd edition describes how the profession has a unique role in assessing an individuals health management and health maintenance capabilities (American Occupational Therapy Association, 2014). Specifically, occupational therapy (OT) practitioners are trained in developing, managing, and maintaining routines related to overall health and wellness. Occupational therapists have a number of different theoretical models that guide their practice. The focus of the Model of Human Occupation (MOHO) is on the mind/body connection and that motivation and performance of occupations are interconnected (Cole & Tufano, 2008). The MOHO describes function as when an individual can choose, organize, and perform occupations that are personally meaningful (Cole & Tufano, 2008). Being able to target a clients volition and engagement in meaningful activities is what makes occupational therapy unique. In addition to volition, performance capacity and habituation are also core tenets to the MOHO. Understanding ones roles, skills, and abilities can guide occupational therapy practitioners throughout the OT process to help clients develop occupational competence. In the HEP AND SELF-MANAGEMENT SKILLS 8 United States, over 80% of therapists across various practice settings reported using the MOHO in everyday practice (Lee et al., 2012). Cole (2010) described the value of the MOHO in facilitating OT practitioners to better understand clients self-perceptions of their capacity and efficacy before setting physical activity goals and intervention planning. Chen, Neufeld, Feely, and Skinner (1999) assessed patient cooperation and satisfaction with HEPs in relation to the MOHO. Their results supported the role of the MOHOs volitional system, but other factors such as roles and interests did not contribute significantly to compliance with exercise (Chen et al., 1999). Venable, Hanson, Shechtman, and Dasler (2000) further supported the MOHO theory through their findings. Older adults who participated in the occupations of exercise individually or in a group experienced a change in the mind-brain-body performance subsystem results leading to increased independent functioning (Venable et al., 2000). Volition is intrinsic and is sometimes triggered by external rewards. With the creation of a HEP, incentives may have the capability of facilitating adherence. Strohacker, Galarraga, and Williams (2014) defined incentives as a stimulus that is contingent upon the performance of a desired behavior, with the intent of increasing frequency of that behavior. DeVahl, King, and Williamson, (2005) found that for students in a voluntary 12-week exercise program, adherence in the group with greater reward structure was stronger than those without an additional incentive. Additionally, Ngo et al., (2014) evaluated the effectiveness of an incentive-driven intervention to increase the amount of time children spent outdoors. At six months, there was found to be an increase in time spent outdoors by children; however, at the end of the trial there was no significant difference (Ngo et al., 2014). Token economies serve as another means to impact outcomes and have been considered a best practice behavior strategy in the school systems (Soares, Harrison, Vannest, & McClelland, HEP AND SELF-MANAGEMENT SKILLS 9 2016). Soares et al. (2016) described token economies as a secondary reinforcement system whereby items that are essentially neutral are awarded based on the demonstration of desirable behaviors. Token economies have been found to be effective in schools, residential treatment centers, mental health hospitals, prison or detention centers, and colleges (Soares et al., 2016). Soares et al. (2016) described the positive effects token economies have on students with emotional and behavioral problems, intellectual problems, attention deficit hyperactivity disorder, learning disabilities, and schizophrenia. Token economies were associated with positive outcomes in social, behavioral, and academic areas among individuals with autism and developmental disabilities (Soares et al., 2016) in addition to improving work performance, social interactions skills, and daily care skills among individuals with a psychotic disorder (Soares et al., 2016). A systematic review by Strohacker, Galarraga, and Williams (2014) concluded that the effectiveness of reinforcing exercise behavior with material incentives is still unclear and that further research is needed to determine sustainable and effective incentivedriven procedures. Perhaps token economies may serve as another means to target a clients volition for home exercise completion. In designing HEP workbooks, the healthcare practitioner must consider the population/diagnosis, which incentives motivate these individuals, which skills/abilities they possess, and how their habits/roles will impact adherence. Summary of Literature The literature indicates that there are several approaches to consider for fostering the development of self-management skills through a HEP (Basaran et al., 2014; Musekamp et al., 2016; Emmerson, Harding, & Taylor, 2017; Kara & Ntsiea, 2015; Lillo-Navarro et al., 2015). Factors such as parent/caregiver involvement and the means in which the exercise is prescribed can have a direct impact on levels of adherence and the development of self-management skills. HEP AND SELF-MANAGEMENT SKILLS 10 There is a need for healthcare practitioners to re-assess the methods in which HEPs are prescribed for individuals with disabilities. Promoting self-management skills through home exercise programs can help these individuals develop the skills needed to prevent further complications and debility in the future. Based on the literature, parent/caregiver involvement and incentives were incorporated into the home exercise program workbook. Addressing these factors, with the guidance of a skilled interdisciplinary team may lead to increased adherence to HEPs, the development of self-management skills, and overall improved patient outcomes. Screening and Evaluation Before beginning a formal needs assessment, it is important to examine the structure of an organization, condition, and their population to establish a community profile (Scaffa & Reitz, 2010). In some regards, I already had a good knowledge base about my site as I previously worked there as a therapy technician and administrative assistant. However, in order to better understand the dynamics of my site, I explored the clinics website and social media blogs. Based on this exploration, I found in addition to occupational therapy, physical therapy, and speech therapy, the clinic has offered applied behavioral analysis therapy for the past few years. The number of older adults the clinic treats is growing, the staff is expanding, clinic remodels and additions are taking place, there are free monthly knowledge based workshops, and a number of other different initiatives are taking place. In general, occupational therapists are responsible for evaluating and determining the needs of their clients (AOTA, 2014). Scaffa and Reitz (2014) defined a need as a gap in what currently exists and the desired state for a particular group secondary to an identified issue. In regards to this doctoral capstone experience, my client is the outpatient therapy clinic. A needs assessment at the clinic was conducted to identify and prioritize current issues that exist. As a HEP AND SELF-MANAGEMENT SKILLS 11 part of my needs assessment, I conducted informal interviews with some key informants at the clinic, including the chief operations officer/clinical director, assistant clinical director, two occupational therapists, a physical therapist, and the fitness therapist. Some of the potential needs consisted of the following: a parent support group, closed head injury support group for adolescents, education on a sensory diet, parent/caregiver health and wellness, disease management program, and a home exercise workbook program. Throughout the interview process, I also had the opportunity to observe different disciplines and the overall dynamics of the clinic for approximately two weeks. As I collected the data about the needs identified in the interview, I synthesized and analyzed continuously to determine if any commonalities existed. Health and wellness, disease management, and the need for a HEP workbook appeared to be common threads based on the needs assessment and interviews. I then reviewed the current literature I had collected and further investigated the literature through the search all feature in the EBSCOhost database. Before selecting a specific need and presenting it to the clinics stakeholders, I reflected on my own personal vision and how it fits into the clinics mission. Scaffa and Reitz (2014) describe a mission statement as the organizations core and underlying purpose for existence. A mission statement serves as the foundation to guide employees and inform consumers of their intended purpose. This particular clinic . . .is dedicated to improving the lives of children and adults with neuromotor disorders through intensive and unique therapy approaches (Crawl Walk Jump Run Therapy Clinic, 2017). The clinics mission aligns with my own personal passion, which is for health and wellness and assisting others in leading more meaningful lives through engagement in healthy occupations. The clinic strives to educate parents and family members and assist their clients in reaching their maximal functional potential. Based on the data accumulated and its relationship to my passion, I presented the idea HEP AND SELF-MANAGEMENT SKILLS 12 of an HEP workbook to the chief operations officer/clinic director. It was determined that the clinic could benefit from an incentive-driven HEP workbook to foster the development of selfmanagement skills and in turn improve the quality of life for youth and older adults. Before implementing a program, evaluation methods were established to determine the merit, worth, and value of a program (Scaffa & Reitz, 2014). I began a formative evaluation process, which consisted of providing credible and relevant information concerning a programs theoretical framework, design, activities, and operation (Scaffa & Reitz, 2014). The MOHO was the theoretical framework chosen to guide my DCE. The MOHO views occupational performance as a complex dynamic system. A large focus of the MOHO is on an individuals volition, habituation, and mind-brain body performance (Venable et al., 2000). Targeting a clients volition or desire to adhere to a prescribed HEP was important to consider in relation to incentive options. A clients habits and roles must be considered when prescribing HEPs that will be realistic and feasible to incorporate outside of therapy. The mind-brain body connection or an individuals client factors are the driving force in determining what is going to be prescribed in a HEP to enhance occupational performance. The design of the program consisted of developing a HEP workbook with certain activities based on an individual therapists expertise and client-centered principles. In addition to the HEP workbook an incentive program was tied to the workbook to promote adherence. These actions were to assist the clinic in making changes to current HEP prescription to improve patient outcomes, facilitate adherence, and increase therapist productivity by decreasing time spent on HEP development. A qualitative design approach through the use of interviews/surveys, observation, and review of current resources was conducted. By following this process, the information gained will assist clinic stakeholders in making changes that will lead to improved outcomes and future practices. HEP AND SELF-MANAGEMENT SKILLS 13 The use of surveys and questionnaires are common data collection methods to track home exercise program adherence (Basaran et al., 2014; Medina-Mirapeix et al., 2017). In order to further diagnose and measure problems related to HEP adherence among clients at the clinic, several therapists were asked to measure adherence four weeks pre- and post-program implementation. Similar to Medina-Mirapeix et al., (2017), adherence was measured by a ratio of the number of days doing the exercises in the previous week over the number of recommended days per week. During the program planning process, a survey was distributed to different disciplines (OT, PT, SLP) to determine which resources they readily used, opinions on what made adherence to a HEP successful, and their perspective on appropriate/feasible incentives. This screening and evaluation process is similar to what is seen in existing areas of practice when evaluating a individual client. For occupational therapists working in traditional practice settings, they screen their client for needs, further evaluate if necessary, and analyze the information gathered to determine a plan of care (AOTA, 2014). This clinic benefits from having an occupational therapy student completing this project as the profession is grounded in a holistic perspective considering all aspects of the client/organization. Occupational therapists do not simply assess client factors, they assess occupations, performance skills, performance patterns, and the context/environment through which an individual is surrounded (AOTA, 2014). Throughout this HEP workbook and incentive program creation, an interdisciplinary approach was utilized so all aspects of the person and their environment could be considered fully. Interdisciplinary professionals often prescribe home exercise programs to supplement the interventions they provide in the clinic. Depending on the individuals insurance and financial standing, outpatient therapy services may only be provided one or two days a week for a total of 120 minutes. The amount of time a clinician spends with their patient per week is a small portion HEP AND SELF-MANAGEMENT SKILLS 14 of an overall week. Therefore, work outside of therapy, through prescribed home exercise programs, is important to complete to further maximize on the progress made during therapy. Chen et al., (1999) prescribed a home exercise program for sixty-two outpatients at an orthopedic upper extremity facility upon evaluating factors that influenced patient cooperation and satisfaction with HEPs. Results indicated that volition was a key component to compliance to with home exercise programs and that encouraging patients to become actively involved in their treatment was crucial for treatment effectiveness (Chen et al., 1999). Additionally, Bhalerao, and Varadharajulu (2016), studied the effects of a community-based monitored home exercise program in stroke survivors and found significant improvements in motor performance and functional independence in comparison to the control non-monitored group. In addition to outpatient settings, inpatient settings pre- and post-surgery are also taking advantage of home exercise program prescription to improve patient outcomes. Sokk et al., (2017) measured improvements in muscle strength, knee range of motion, and stride length in patients with knee osteoarthritis through a prescribed home exercise program eight weeks prior to total knee arthroplasty (TKA). Statistically significant differences have also been found through HEP prescription twelve months post TKA in regards to improve functional gains (Anneli et al., 2017). Prescribing home exercise programs has been critical to the rehabilitation process and is something that clinicians often take advantage of regardless of what practice setting they work in. Implementation The program planning process began by developing a measure to determine program effectiveness. Three physical therapists, two occupational therapists, and one speech language pathologist tracked current client adherence to the HEPs prescribed for half of their caseload for HEP AND SELF-MANAGEMENT SKILLS 15 four weeks before and four weeks after the implementation of the incentive-driven HEP. Therapists were provided with the option to complete a log of adherence on either a secured Google document or a hard written copy (see Appendix A). During this time, a brief survey was distributed to the interdisciplinary staff in order to gain a better sense of which resources staff were currently utilizing for HEPs, opinions on what makes adherence to a HEP successful, and perspectives on appropriate/feasible incentives (see Appendix B). In order to protect patient information, the surveys and adherence logs did not leave the clinic. These items were kept in the clinic office, which is secured through a password-protected keypad. During the pre-program measuring phase, prior to the start of the incentive-driven HEP program, I had the opportunity to collaborate with the lead therapists of each department, to gather additional information on features for the workbook as well as locate current resources. This included three different meetings with a physical therapist (PT), occupational therapist (OT), and speech language pathologist (SLP). The information from the survey was analyzed, and common themes were established. Therapists expressed that they utilized simple handouts, picture cards, charts to track participation, and internet websites with HEP information. Some common topics addressed in HEPs included the following: reflexes, sensory diets, heavy work, strengthening/endurance exercises, strategies to decrease tactile defensiveness, communication checklists, pre-linguistic skills, and activity of daily living (ADL) skills. There were three common themes that therapists identified that made their clients successful with a HEP: parent participation, parent/client motivation, and activities that were easily incorporated into their daily routines. Therapists identified the following incentives that could increase HEP adherence: physical check-off sheet, HEP AND SELF-MANAGEMENT SKILLS 16 ability to pick a fun activity next session, reward (Goldfish crackers, fruit snacks, etc.), and raffle tickets for a larger prize. Based on information obtained from the surveys and interviews with the lead therapists from each department, the next step consisted of developing the HEP workbook. A thorough review of current departmental HEP resources were analyzed and organized. This included reviewing current OT HEP handouts and collaborating with another OT student who was in the process of organizing the disciplines resources, as well as printing and organizing commonly used SLP handouts. I also held two separate sessions with an SLP and PTA to take pictures of certain HEPs. The clinic had expressed their desire to create their own reflex handouts, and these pictures would be included in them. These additions were made to the departmental HEPs based on therapist feedback and a mock HEP workbook was created. A proposal of estimated startup/yearly costs and a mock HEP workbook was presented to the chief operations officer/clinical director for review. In collaboration with chief operations officer, it was determined that a folder with a weekly planner (see Appendix C) would be incorporated inside the HEP workbook. The HEP workbook would also hold a general welcome letter describing the HEP workbook purpose and incentive program. Therapists would then provide education and specific HEPs of their choosing to supplement the HEP workbook to keep home programming client-centered for each individual. It was determined that if clients were compliant with their prescribed HEPs they could enter their name each week to be selected for a monthly drawing. At the end of the month, a winner would be chosen at random, and they would be deemed the clinics HEP Star of the Month. If consent was provided, this individual would have their picture displayed in the clinic and be able to choose a small prize. HEP AND SELF-MANAGEMENT SKILLS 17 After the owner approved the cost proposal, I collaborated with the office manager to order the HEP Incentive Program supplies. The next step consisted of putting together the HEP workbooks, organizing departmental resources, gathering and staging supplies for the incentive program, and putting together a HEP toolkit bin where resources would be held. Therapists were instructed to provide the HEP workbooks at their discretion to current patients for one month. Any new incoming patients were administered the HEP workbook upon evaluation. Clients were instructed to bring their HEP workbook to each session, and at their last session for the week, their therapist for that day would determine if compliance was met. Leadership and Staff Development In order to facilitate successful service provision with program implementation it was important that I demonstrated effective leadership skills throughout the process. According to the results from the Strengthsfinder 2.0 quiz, discipline, empathy, consistency, positivity, and futuristic were among my top five strengths (Rath, 2017). My futuristic mindset allowed me to partner with certain individuals at the clinic who were also eager to put my vision into motion. This strength allowed me to excel in the area of developing a start-up program. Staying disciplined and consistent during program planning and implementation ensured timelines and objectives were met. Harnessing my passion for health and wellness, as well as demonstrating positivity and enthusiasm throughout the project helped foster a positive context to initiate a new program. Rath (2017) describes positivity as planning highlighted activities where small achievements are turned into events or regular celebrations, which others can look forward to. This idea for action describes the basis of my incentive program. If a client adheres to their prescribed home exercise program, they will have the opportunity to be rewarded and recognized HEP AND SELF-MANAGEMENT SKILLS 18 for their accomplishment. My strengths are common threads and skills that can be seen throughout the program implementation process that enabled me to be successful. In order to facilitate effective service provision of this program a brief in-service was held for staff at the clinic. Services at the clinic are provided on a one-to-one basis, giving therapists the opportunity to individually introduce the HEP workbook to each client and describe how this program could improve outcomes for them. Education was provided on the format of the incentive program, features of the HEP workbook, location of supplies, and any additional questions were addressed at this time. Providing education to staff ensured therapists were confident and competent with the format of the program. It also served as an opportunity for therapists to self-reflect on HEP prescription and encouraged them to be more accountable to continue to provide education to individuals at the clinic. Discontinuation and Outcome Phase In order to measure program effectiveness, it was important that outcome measurements were completed. As a part of my post-program assessment, therapists were asked to track HEP adherence for approximately four weeks after program implementation. Therapists were provided an additional hard copy of the tracking table in the same format as the pre-measurement tracking table and access to a secured Google document depending on their preference. Tracking HEP adherence approximately one month after program implementation allowed for an objective measure on whether the use of an HEP incentive-driven program improved client followthrough. The post-program measurement results allowed the clinic to reassess the format of the program and any future changes that could be made in order to make it more successful. As a result of the incentive-driven HEP program, results pre- and post-program did not indicate substantial significant change in regards to overall adherence to home programs. HEP AND SELF-MANAGEMENT SKILLS 19 Average pre- program was approximately 49.25% adherence for four weeks, while postprogram results indicated roughly 64.96% (Appendix D). Average adherence did trend upward by approximately 15%. However, these results should be interpreted with caution as this was not a formal research study and there was a lack of control by the investigator. The clinic was closed one day during this time period, some clients did not show up for their scheduled treatment or took a break from therapy, and therapists were off certain days which impacted adherence tracking. General feedback was sought from therapists on aspects that went well during the month and things that could be improved upon. Some suggestions for improvement were to have a separate adult incentive program and include a blank table of all exercises that were provided with a check off system. Therapists reported clients enjoyed the competition and possibility of a prize, and more patients were bringing in their folders the month following program start-up. They reported that the HEP incentive program was something that the clinic needed and filled a gap in regards to service delivery. Additionally, as a part of the discontinuation phase, program sustainment was taken into consideration. Scaffa and Reitz (2014) describe sustainment as a crucial component in the program design and implementation. This process involves ongoing evaluation, ongoing service development, program modification to continue to meet the clinics desired needs, and effective marketing (Scaffa & Reitz, 2014). In collaboration with my site mentor, it was determined that a therapy technician would be responsible for keeping track of HEP inventory, assembling workbooks, and organizing supplies for the incentive-driven program. In order to ensure a smooth transition of this process, three meetings were held with the lead individual responsible for program sustainment. In regards to ongoing service development and program modification, HEP AND SELF-MANAGEMENT SKILLS 20 a member of the therapy team would be held responsible secondary to their expertise and skilled training with past program development. Continuous Quality Improvement Continuous quality improvement (CQI) is a management process that assesses the organization of people, equipment, and procedures in place that are set to reproduce a series of intended tasks yielding a desired result (AOTA, 2011). Within CQI, Six Sigma Strategic Planning is a process that has extended into the healthcare setting that aims to eliminate waste and enhance manufacturing process. This strategic planning process was designed to define, measure, analyze, implement, improve, and control (AOTA, 2011). Applying this framework to the incentive-driven home exercise program will allow the outpatient clinic to respond to societys needs accordingly. Within the discontinuation phase, the program resides at the control level of the CQI process. Ideally, the plan is to continue to implement the HEP workbooks along with the incentive-driven HEP program on a long-term basis. However, my time as a DCE student at the clinic only spanned one month after program initiation. It was challenging for me to predict changes and modifications that would need to be made after only one month. Programs terminate for many reasons such as inadequate planning for sustainment, lack of buy-in by the community, and financial barriers (Scaffa & Reitz, 2014). In regards to the HEP incentive program, it was essential that I planned for ongoing program management in order to ensure follow-through. Furthermore, the clinics needs are ever changing, and it is important that they stay current with the changes in society and the surrounding community. Clientele at the clinic dramatically increases in the summer months secondary to children being on summer vacation from school. A lack of community buy-in will also be a large component of the HEP incentive HEP AND SELF-MANAGEMENT SKILLS 21 program to consider. Clients may not be motivated to complete home exercises, they may lose interest in the incentives offered, report lack of time, or they may not find the connection to participate in a HEP meaningful. In addition to these anticipated barriers, responding to staff needs, incorporating evidence-based practice, and having a system to measure quality outcomes throughout the program must be consistently re-evaluated. Although my time may be limited at the clinic, the designated individual in charge of sustainment may consider re-administering the therapist survey, tracking HEP adherence at six months after program start-up, or surveying clients to get feedback about the new program. In order to plan for continuous quality improvement, it was important that I provided the proper education to the designated individuals in charge. A meeting with the lead individual in charge took place to ensure a smooth transition process. The HEP tool kit with all resources regarding program development and sustainment were reviewed. This included the original cost proposal, inventory list, original copies of weekly planners/HEP client instructions, several key interdisciplinary team HEPs, adherence tracking tables for outcome measurements/reassessment, and incentive program materials. Stressing the importance of CQI took place to ensure the program was currently meeting and could continue to meet its intended objectives of improving patient outcomes and quality of life through home exercise program adherence. Home exercise programs are an essential component of the rehab process in an outpatient therapy setting. Changes in healthcare policy and insurance require therapists to be more conscientious as the time they have with clients in an outpatient setting is limited. Many individuals at the clinic may only spend two hours a week at therapy, leaving 166 hours outside of therapy each week. Therapists rely largely on home exercise programs to further supplement their treatment for this very reason. Time spent outside of therapy completing home programs is HEP AND SELF-MANAGEMENT SKILLS 22 equally important in order to improve patient outcomes. Therefore, continuing to re-evaluate effective measures to facilitate adherence through home exercise programs and strategizing on methods to continue to hold therapists more accountable to HEP prescription will improve performance of clients and best practice for the clinic. Overall Learning This doctoral capstone experience (DCE) has been a period of professional development as a future healthcare practitioner. It has allowed me to self-reflect on areas of continued growth and given me the opportunity to take on other roles outside of the traditional occupational therapy student. During my time at the outpatient clinic, my primary focus was on advanced clinical skills with a secondary focus on program development. It was challenging to find a balance between these two entities, but it served as a great opportunity for me to develop skills beyond the entry-level practitioner. Time management, planning, and remaining flexible were skills necessary to succeed in this setting. This experience was highly self-directed and led me to take on more initiative in regards to my learning and needs. Even more, this experience was not structured like a traditional Level II fieldwork placement, in that I had to effectively collaborate and advocate with different disciplines for learning opportunities. This involved preparing my weekly schedule with certain time allocated to different disciplines to learn manual skills for the upper extremity, introduction to neurodevelopmental principles, feeding techniques, sensory integration interventions, etc. Something as simple as making my own weekly schedule involved going through several different avenues and methods of communication between staff and myself. This process started by planning my schedule for the week, getting it approved by my site mentor, inputting the information into the clinics scheduling system, and collaborating with the staff and HEP AND SELF-MANAGEMENT SKILLS 23 therapy technicians to ensure this information was displayed on a daily schedule so therapists were aware if I was co-treating with them on any given day. Additionally, effective and clear communication were essential when it came to articulating my role as a doctoral capstone student to staff at the clinic, colleagues, clients, and their families. A majority of my communication with clients and their families took place orally. However, with the incentive driven HEP program, one of my tasks consisted of developing a letter for clients and their families describing the format of the program. Based on the feedback from my site mentor on the letter, I quickly learned the need to articulate my language to a reading level that would be most appropriate for the given audience at the clinic. It was important that I considered the health literacy of the clinics clientele and how to effectively communicate so that the information I provided on the educational handout would be understood. I found that it is essential to keep in mind who your target audience as well as the means of communication chosen. Furthermore, I learned that there are many different components that go into managing a privately owned outpatient therapy clinic. Being able to work together as a team is an essential skill that all staff at the clinic must demonstrate in order to be successful. Therapists are just one member of the team, and it is important they understand the roles of the other team members to carry out effective services. Providers from all disciplines must come together to collaboratively improve work processes and, in turn, improve patient outcomes (Newhouse & Spring, 2010). Newhouse and Springs (2010) ideal future encompasses health care providers who are educated to deliver patient-centered care in interprofessional teams proficient in evidence-based practice, quality improvement, and informatics solution (Newhouse & Spring, 2010, p. 1). Simply taking advantage of each team members strengths and leadership skills yielded desired HEP AND SELF-MANAGEMENT SKILLS 24 outcomes in everyday practice. Demonstrating effective leadership and advocacy skills also involved having a good understanding of what was within each professions scope of practice and knowing when it was most appropriate to refer to an individual with more expertise. In spite of minimal change between pre- and post- program implementation with regards to overall HEP adherence this experience served as a great learning process. I learned the challenges in getting both staff and clientele on board in launching a new program. It can be difficult to come into an organization and understand their culture within a short time span. I think it is important to set realistic goals for yourself and the program; initially I had hoped that the new program would be 50-75% effective after one month, but it made a change of 15% more adherence. In collaboration with my site mentor, we discussed how the timing of program implementation may have been one factor that impacted adherence results. The clinic has undergone some organizational restructuring changes, and there has been a fair amount of change for staff in regards to employee policies and procedures. Whether or not I am given the opportunity to implement another program in the future or make changes to the HEP program, I would like to conduct more education for staff and clientele. In order to get others on board with a new program, I think it is important the staff are provided the proper education. Overall, I have gained a better understanding on the importance of providing the proper education to individuals on all levels in an organization when implementing organizational changes. This doctoral capstone experience has provided me with the opportunity to develop skills beyond those of the entry-level practitioner. I have had the opportunity to collaborate with a certified orthopedic manual physical therapist on advanced manual skills for the upper extremity, an introduction to neurodevelopmental principles, and exposure to some unique treatment approaches/equipment. This self-directed experience has given me the opportunity to interact HEP AND SELF-MANAGEMENT SKILLS with healthcare professionals and colleagues outside of the rehab team. Continued refinement and learning of clinical skills, exposure to roles and responsibilities of management, and the creation of a program has been an exciting and rewarding experience to enhance the development of the profession and my personal role as a future healthcare practitioner. 25 HEP AND SELF-MANAGEMENT SKILLS 26 References American Occupational Therapy Association. (2011). The occupational therapy manager (5th ed.) Bethesda, MD: AOTA Press. American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. Anneli, H., Nina, S., Arja, H., Mirja, V., Petri, S., Konsta, P., & Jari, Y. (2017). Effect of total knee replacement surgery and postoperative 12-month home exercise program on gait parameters. Gait & Posture, 53, 92-97. Basaran, A., Karadavut, K. I., Uneri, . O., Balbalogu, U, O., & Atasoy, N. (2014). Adherence to home exercise program among caregivers of children with cerebral palsy. Turkish Journal of Physical Medicine & Rehabilitation, 60(2), 85-91. Bhalerao, S., & Varadharajulu, G. (2016). Effect of monitored home exercise program on quality of life in stroke survivors. Indian Journal of Physiotherapy & Occupational Therapy, 10(4), 122-124. doi:10.5958/0973-5674.2016.00132.5 Cahill, S. M., Polo, K. M., Egan, B. E., & Marasti, N. (2016). Interventions to promote diabetes self-management in children and youth: A scoping review. American Journal of Occupational Therapy, 70(5), 7005180020p1-8. doi:10.5014/ajot.2016.021618 Centers for Disease Control and Prevention (2007). Physical activity and good nutrition: Essential elements to prevent chronic diseases and obesity, 2007; 1-4. Doi:10.1037/e599652007-001 Centers for Disease Control and Prevention. (2017a). Adult physical activity information. Retrieved from https://www.cdc.gov/nchs/nhis/physical_activity/pa_glossary.htm HEP AND SELF-MANAGEMENT SKILLS 27 Centers for Disease Control and Prevention. (2017b). Chronic diseases: The leading causes of death and disability in the United States. Retrieved from https://www.cdc.gov/chronicdisease/overview/index.htm Centers for Disease Control and Prevention. (2017c). Obesity fact sheet. Retrieved from http://www.cdc.gov/ncbddd/ disabilityandhealth/documents/obesityfactsheet2010.pdf Chen, C.-Y., Neufeld, E S., Feely, C. A., & Skinner, C. S. (1999). Factors influencing compliance with home exercise programs among patients with upper-extremity impairment. American Journal of Occupational Therapy, 53, 171-180. Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Crawl Walk Jump Run Therapy Clinic. (2017). Retrieved from http://www.crawlwalkjumpruntherapy.com/ DeVahl, J., King, R., & Williamson, J. W. (2005). Academic incentives for students can increase participation in and effectiveness of a physical activity program. Journal of American College Health: J of ACH, 53(6), 295-298. Emmerson, K. B., Harding, K. E., & Taylor, N. F. (2017). Home exercise programmes supported by video and automated reminders compared with standard paper-based home exercise programmes in patients with stroke: A randomized controlled trial. Clinical Rehabilitation, 31(8), 1068-1077. doi:10.1177/0269215516680856 Jirikowic, T. L., & Kerfeld, C. I. (2016). Health-promoting physical activity of children who use assistive mobility devices: A scoping review. American Journal of Occupational Therapy, 70, 7005180050. http://dx.doi.org/10.5014/ajot.2016.021543 Kara, S., & Ntsiea, M. V. (2015). The effect of a written and pictorial home exercise prescription HEP AND SELF-MANAGEMENT SKILLS 28 on adherence for people with stroke. Hong Kong Journal of Occupational Therapy, 26, 33-41. doi:10.1016/j.hkjot.2015.12.004 Lambert, T. E., Harvey, L. A., Avdalis, C., Chen, L. W., Jeyalingam, S., Pratt, C. A., & ... Lucas, B. R. (2017). An app with remote support achieves better adherence to home exercise programs than paper handouts in people with musculoskeletal conditions: A randomized trial. Journal of Physiotherapy, 63(3), 161-167. doi:10.1016/j.jphys.2017.05.015 Lee, S. W., Kielhofner, G., Morley, M., Heasman, D., Garnham, M., Willis, S., & ... Taylor, R. R. (2012). Impact of using the Model of Human Occupation: A survey of occupational therapy mental health practitioners' perceptions. Scandinavian Journal of Occupational Therapy, 19(5), 450-456. doi:10.3109/11038128.2011.645553 Lillo-Navarro, C., Medina-Mirapeix, F., Escolar-Reina, P., Montilla-Herrador, J., GomezArnaldos, F., & Oliveira-Sousa, S. L. (2015). Parents of children with physical disabilities perceive that characteristics of home exercise programs and physiotherapists' teaching styles influence adherence: A qualitative study. Journal of Physiotherapy, 61(2), 81-86. doi:10.1016/j.jphys.2015.02.014 Medina-Mirapeix, F., Lillo-Navarro, C., Montilla-Herrador, J., Gacto-Snchez, M., FrancoSierra, M. ., & Escolar-Reina, P. (2017). Predictors of parents' adherence to home exercise programs for children with developmental disabilities, regarding both exercise frequency and duration: A survey design. European Journal of Physical and Rehabilitation Medicine, 53(4), 545-555. doi:10.23736/S1973-9087.17.04464-1 Musekamp, G., Bengel, J., Schuler, M., & Faller, H. (2016). Improved self-management skills predict improvements in quality of life and depression in patients with chronic disorders. Patient Education and Counseling, 99(8), 1355-1361. doi:10.1016/j.pec.2016.03.022 HEP AND SELF-MANAGEMENT SKILLS 29 National Wellness Institute. (n.d.). The six dimensions of wellness. Retrieved from http://www.nationalwellness.org/?page=Six_Dimensions Newhouse, R. P., & Spring, B. (2010). Interdisciplinary evidence-based practice: moving from silos to synergy. Nursing Outlook, 58(6), 309-317. doi:10.1016/j.outlook.2010.09.001 Ngo, C. S., Pan, C., Finkelstein, E. A., Lee, C., Wong, I. B., Ong, J., & ... Saw, S. (2014). A cluster randomised controlled trial evaluating an incentive-based outdoor physical activity programme to increase outdoor time and prevent myopia in children. Ophthalmic & Physiological Optics: The Journal of the British College of Ophthalmic Opticians (Optometrists), 34(3), 362-368. doi:10.1111/opo.12112 Noerr, K. L. (2018). The influence of assistance in home-based exercise programs for individuals with intellectual disabilities. Dissertation Abstracts International: Section B: The Sciences and Engineering, 78, 10-B(E). Proffitt, R. (2016). Home exercise programs for adults with neurological injuries: A survey. American Journal of Occupational Therapy, 70, 7003290020. http://dx.doi.org/10.5014/ajot.2016.019729 Rath, T. (2017). Strengthsfinder 2.0. New York: Gallup Press. Rimmer, J. H., Chen, M. D., McCubbin, J. A., Drum, C., & Peterson, J. (2010). Exercise intervention research on persons with disabilities: What we know and where we need to go. American Journal of Physical Medicine and Rehabilitation, 89, 249263. http://dx.doi.org/10.1097/PHM.0b013e3181c9fa9d Rimmer, J. H., & Rowland, J. L. (2008). Physical activity for youth with disabilities: A critical need in an underserved population. Developmental Neurorehabilitation, 11, 141148. http://dx.doi.org/10.1080/17518420701688649 HEP AND SELF-MANAGEMENT SKILLS 30 Rimmer, J. H., Yamaki, K., Davis Lowry, B. M., Wang, E., & Vogel, L. C. (2010). Obesity and obesity-related secondary conditions in adolescents with intellectual/developmental disabilities. Journal of Intellectual Disability Research, 54(9), 787-794. Scaffa, M. E. & Reitz, S.M. (2014). Occupational therapy in community based practice settings (2nd ed.). Philadelphia: F.A.Davis. Soares, D. A., Harrison, J. R., Vannest, K. J., & McClelland, S. S. (2016). Effect size for token economy use in contemporary classroom settings: A meta-analysis of single-case research. School Psychology Review, 45(4), 379-399. Sokk, J., Ratsepoo, M., Kums, T., Ereline, J., Haviko, T., Gapeyeva, H., & Paasuke, M. (2017). Motor performance in patients with knee osteoarthritis after 8-week home exercise program. Acta Kinesiologiae Universitatis Tartuensis, 23, 74-85. Strohacker, K., Galarraga, O., & Williams, D. M. (2014). The impact of incentives on exercise behavior: a systematic review of randomized controlled trials. Annals of Behavioral Medicine: A Publication of the Society of Behavioral Medicine, 48(1), 92-99. doi:10.1007/s12160-013-9577-4 Venable, E., Hanson, C., Shechtman, O., & Dasler, P. (2000). The effects of exercise on occupational functioning in the well elderly. Physical & Occupational Therapy in Geriatrics, 17(4), 29-42. HEP AND SELF-MANAGEMENT SKILLS 31 Appendix A. Pre-/Post-Tracking Table e.g.) J.S. Week 1 Week 2 Week 3 Week 4 3/5 2/5 0/5 4/5 Name Name Name Name Name Name Name Name Name Name Name Name Name Name Name *I will be asking you to please track compliance for the same individuals PRE and POST. Feel free to jot down initials or write the name of the client in the first column. This sheet will NOT leave the clinic, once it is collected by the investigator. HEP AND SELF-MANAGEMENT SKILLS 32 Appendix B. Therapist survey Name (optional):__________________ The purpose of this survey is to diagnose problems related to HEP adherence at Crawl Walk. This survey will assist occupational therapy student, Katie Zaborowicz, in her Doctoral Capstone Experience currently titled, Health and wellness among youth and older adults: Promotion of self-management skill development through an incentive driven home exercise program. 1.) What resources do you currently incorporate in your HEP prescription for clients? 2.) For your clients that are successful with a HEP, what makes them successful? 3.) What are some incentives that you feel are appropriate and feasible to provide to increase adherence to a HEP? 4.) Additional thoughts or concerns: HEP AND SELF-MANAGEMENT SKILLS Appendix C. Weekly Planner 33 HEP AND SELF-MANAGEMENT SKILLS 34 Appendix D. Tables Figure 1 HEP Adherence Pre-Program Implementation Average Percent Adherence HEP Adherence Pre-Program Implementation 100% 80% 60% 40% 54.60% 56.40% 20% 41% 45.00% 3 4 0% 1 2 Weeks Figure 1. Therapists (2 DPT, 1 PTA, 1 OTR, and 1 COTA) measured adherence by a ratio of the number of days doing the exercises in the previous week over the number of recommended days per week. The bar graph illustrates average of HEP adherence across four weeks pre program. Figure 2 HEP Adherence Post-Program Implementation Average Percent Adherence HEP Adherence Post-Program Implementation 100% 80% 60% 63.60% 63% 1 2 66% 67.25% 3 4 40% 20% 0% Weeks Figure 2. Therapists (2 DPT, 1 PTA, 1 OTR, and 1 COTA) measured adherence by a ratio of the number of days doing the exercises in the previous week over the number of recommended days per week. The bar graph illustrates average of HEP adherence across four weeks post program.  ...

... PREDICTING REHABILITATION MANAGER KNOWLEDGE OF MEDICARE GUIDELINES IN SKILLED NURSING FACILITIES Submitted to the Faculty of the College of Health Sciences University of Indianapolis In partial fulfillment of the requirements for the degree Doctor of Health Science By: Rebecca L. Finni, MS, OTR/L Copyright August 9, 2017 By: Rebecca L. Finni, MS, OTR/L All rights reserved Accepted by: Elizabeth S. Moore, PhD, Committee Member William H. Staples, PT, DHS, DPT, Committee Member Beth Ann Walker, PhD, OTR, Committee chair Laura Santurri, PhD Director, Postprofessional Programs Stephanie Kelly, PT, PhD, Dean, College of Health Sciences University of Indianapolis REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES ii Abstract Health care providers must have a clear understanding of regulatory guidelines to support successful payment of clinically appropriate and medically necessary services. Limited research has examined the knowledge of Medicare documentation and reimbursement guidelines for occupational therapy (OT), physical therapy (PT) and speech language pathology (SLP) clinicians functioning as clinician managers. A crosssectional, online survey was conducted to determine the perceived and actual knowledge regarding Medicare documentation and reimbursement guidelines specific to rehabilitation services in the skilled nursing facility (SNF) rehabilitation setting. A total of 374 surveys were completed. Respondents perceived their overall knowledge to be much higher than their actual knowledge (median scores of 80.0% versus 66.7%). This low percentage of correct responses highlights a persistent deficiency in knowledge across participants. Scores were significantly different by practitioner level, gender, and across categories of level of education, current clinician manager role, and hours of employer-sponsored formal training related to Medicare guidelines. Positive low correlations were found between overall Medicare knowledge score with years of experience in current role and with perceived knowledge score. Regression analysis showed that perceived knowledge score, level of education, current clinician manager role, years of experience in current role, and gender accounted for 20.9% of variance in overall Medicare knowledge score. While the results did not identify a strong single predictor for actual Medicare knowledge scores, having insight into how well clinician managers understand Medicare documentation and reimbursement guidelines can help REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES iii guide educators and providers in structuring trainings to limit the spread of misinformation and keep clinicians well-informed. Keywords: rehabilitation, management, Medicare, reimbursement, documentation, occupational therapy, physical therapy, speech language pathology, skilled nursing facility, regulation, long term care, policy, self-assessment REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES iv Acknowledgements I would not have been able to succeed in this program without the support and encouragement of many people. Thank you to my research committee for continued guidance and patience as I navigated the thesis waters. Special thanks to Dr. Moore for her continued assistance keeping me on track with all of the complicated statistical analysis this project required, to Dr. Staples for help with all things Medicare, and to Dr. Walker for general assistance in staying sane throughout the whole process. Thank you to my professional colleagues who supported my efforts to complete this degree during my many other projects and responsibilities. Thank you as well to the many clinician managers who took the time to complete this survey and contribute to our understanding of how we can better teach and train such a complicated subject. A HUGE thank you is owed to my family without whom this degree would never have been finished. My husband and children in particular spent many long hours without me yet continued to spur me on with love, reassurance, and absolute confidence in my abilities. Finally, I offer special thanks in memory of my mom who was instrumental in my joining her in this great profession. An excellent OT, she worked as a clinician, educator, and advocate, and was absolutely my best mentor. Her encouragement always challenged me to explore new ways of expanding my mind and my role in our profession. She didnt get to see me finish this degree in person, but she had no doubts I would do so and I know I have made her proud. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES v Table of Contents Abstract........ii Acknowledgements.iv Table of Contents.....v List of Tables and Figures..................................................................................................vi Chapter 1: Introduction1 Chapter 2: Literature Review...........4 Chapter 3: Method.13 Study Design..........13 Participants.....13 Sampling....................14 Procedures..15 Questionnaire Development...16 Content Validity of the Medicare Knowledge Quiz......17 Statistical Analysis.18 Chapter 4: Results..19 Respondent Characteristics....19 Objective 1: Perceived Knowledge of Medicare Guidelines.....21 Objective 2: Actual Knowledge of Medicare Guidelines.....21 Objective 3: Predictors of Actual Knowledge of Medicare Guidelines........22 Chapter 5: Discussion and Conclusion..26 References.....32 Appendices....40 REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES vi List of Tables and Figures Table 1 Respondent Demographics........40 Figure 1 Geographic Distribution of Targeted Participant Facilities.......41 Table 2 Clinician Manager Experience by Role.....42 Table 3 Respondent Training History and Learning Preferences.......43 Table 4 Respondent Self-Assessed Rating of Perceived Knowledge from Part 2 of Survey........................................................................................................44 Table 5 Questions missed by 30% or more of respondents........45 Table 6 Predictors of Medicare Knowledge Score.........49 REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 1 Predicting Rehabilitation Manager Knowledge of Medicare Guidelines in Skilled Nursing Facilities As the older adult population of the United States (U.S.) continues to age, the number of individuals age 65 years and older is growing at an unprecedented rate. According to the Centers for Disease Control and Prevention ([CDC], 2013), older adults will account for approximately 20% of the population by the year 2030. Two of every three older adults have one or more chronic diseases or degenerative illnesses. Treatment for chronic conditions accounts for two-thirds of U.S. health care expenses, and increases to 95% of expenses with older adults. Medicare spending is anticipated to nearly double from $555 billion in 2011 up to $903 billion by 2020 (CDC, 2013). As the primary payer for rehabilitation services within the skilled nursing facility (SNF) setting, Medicare has sought ways to ensure their dollars are spent wisely and judiciously for services deemed reasonable and medically necessary, particularly occupational therapy (OT), physical therapy (PT), and speech language pathology (SLP). As focus sharpens on therapy claims in the SNF setting through various audits and reviews, clinician awareness and implementation of Medicare documentation and reimbursement guidelines continue to be key to successful reimbursement by Medicare for therapy services (Coffman, 2003). Ensuring that documentation meets both clinical requirements for successful provision of care and financial requirements for justification of medical necessity and reimbursement requires that clinicians be savvy about specific Medicare regulations related to therapy provision (Baeten, 1997). Therapy providers are the entities actually billing Medicare for therapy services rendered. Providers can range from a single, independent skilled nursing facility to a REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 2 large network of many facilities. Providers then employ therapy clinicians, either directly or through contracting with an external therapy company, to deliver therapy services to clients. Often, one individual clinician has responsibility for oversight of the rehabilitation department as a whole, and directs the clinical staff. As such, providers, clinician managers, and therapy clinicians each play a role in the delivery of and subsequent payment for therapy services. Therapy services for older adults can take many forms such as: therapy rendered as part of a skilled rehabilitation stay in the SNF following a 3-night qualifying hospital stay for an acute medical issue; therapy to address chronic or recent functional declines in long term care residents of a SNF; or outpatient therapy services provided to older adults. A significant amount of funds are at risk for denial of payment to SNF providers by Medicare due to incomplete understanding or lack of compliance with Medicare guidelines (Senft, 2010). As documentation of therapy services is the responsibility of the treating clinician, therapy providers must determine how well their clinicians understand Medicare documentation and reimbursement guidelines and what can be done to optimize training and education opportunities for maximum carryover and understanding. Entry-level therapy education programs provide the necessary basic instruction for general documentation of therapy services across practice settings, leaving most payer-specific and setting-specific guidelines to be learned on the job (Accreditation Council for Occupational Therapy Education [ACOTE], 2012; Commission on Accreditation in Physical Therapy Education [CAPTE], 2013; Council on Academic Accreditation in Audiology and Speech-Language Pathology [CAA], 2015). A variety of educational and REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 3 training resources exist to impart this information to clinicians, but limited research has been conducted to look at specific factors predicting how well OT, PT and SLP clinicians understand Medicare documentation and reimbursement guidelines and how well they implement this knowledge within their practice. The purpose of this study was to determine the knowledge rehabilitation (OT, PT, and SLP) clinician managers have regarding Medicare documentation and reimbursement guidelines and whether this knowledge varies by clinician manager characteristics. Specifically, this study addressed the following objectives: 1. To determine perceived knowledge of Medicare documentation and reimbursement guidelines in OT, PT and SLP clinicians functioning as clinician managers in a SNF setting. 2. To determine actual knowledge of Medicare documentation and reimbursement guidelines in OT, PT and SLP clinicians functioning as clinician managers in a SNF setting. 3. To determine if OT, PT, and SLP clinician manager characteristics, including their perceived knowledge of Medicare documentation and reimbursement guidelines, are significant predictors of their actual knowledge of Medicare documentation and reimbursement. By knowing if Medicare knowledge differs across these demographics, therapy providers can better target education efforts and structure trainings to best meet the specific learning needs of their employees. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 4 Literature Review For many older adults, Medicare is the primary payer of the health insurance costs associated with treatment of both chronic and acute conditions. During 2012, Medicare was the primary payer for 23% of total health care costs across the U.S., which included $28.4 billion in Medicare spending for skilled nursing facilities alone (Medicare Payment Advisory Commission [MedPAC], 2014). The Medicare Board of Trustees anticipated that Medicare spending would increase from $523 billion in 2010 to $932 billion by 2020, and that by the year 2030, enrollment will be expected to nearly double while the ratio of health care workers to beneficiaries is expected to decline from 3.7 to 2.4 (Board of Trustees, 2010). This disparity between enrolled beneficiaries and the number of available health care workers to deliver services may result in challenges for older adults to receive the occupational therapy, physical therapy, and speech therapy services they need. Medicare regulations that govern the documentation and delivery of occupational, physical, and speech therapies are largely established by Medicare Administrative Contractors (MACs) via Local Coverage Determinations (LCDs). These regional policies are used to establish medical necessity and technical requirements for reimbursement when there is not a National Coverage Determination (NCD), or if there is a need to further define an NCD (Allen & Keysor, 2005; Lee, 2012). Periodic review of therapy documentation is overseen by the MACs, as well as by Recovery Audit Contractors (RACs) and other contractors who specifically target claims and seek evidence of overpayment by Medicare for services deemed not reasonable or medically necessary. Nearly $1 billion in Medicare overpayments was identified in 2008 following the initial REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 5 RAC demonstration project which reviewed Medicare Part A and Part B claims in three states (Robin & Gershwin, 2010). Based on these results, Congress mandated in 2010 that RAC reviews would be conducted nationally (Robin & Gershwin, 2010; Scott & Camden, 2011). Specific to therapy, Congress mandated automatic manual medical review of all therapy claims above a certain annual dollar threshold (therapy cap) in 2012. The Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) passed in April 2015 changed the mandated review to a targeted review program for claims over the therapy cap (CMS, 2015). Clinicians asked about the most prevalent ethical dilemmas faced by occupational therapists in rehabilitation settings cited dilemmas related to reimbursement as their top concern (Foye, Kirschner, Wagner, Stocking, & Siegler, 2002). The risk for denial of reimbursement for services is often under-recognized by clinicians due to poor understanding that inadvertent and often unintentional billing, coding, or documentation errors can lead to denial of reimbursement, and can be characterized as fraud, waste, and abuse during these reviews (Rapsilber & Anderson, 2000; Ries, 2014). Technical errors such as missing signatures or required documents result in denials even with clear evidence of medical necessity for therapy services (Senft, 2010; Senft 2016). Appropriate billing and coding for services provided is the professional responsibility of every clinician, including adherence to the most recent policies and guidelines (Ries, 2014). As these guidelines change frequently, clinicians may struggle to keep up with current standards. Policy changes and updates within each payer, particularly Medicare, can create drastic changes in how therapy services are provided. Thomesen (1996) found that REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 6 reimbursement mechanisms in skilled nursing facilities directly impacted the focus and documentation of the occupational therapy services provided in that setting. The 1998 implementation of the Prospective Payment System (PPS) in skilled nursing settings included a new payment delivery system based on minutes of therapy and resource utilization groups (RUGs) with a fixed per diem rate instead of the previous exclusively fee-for-service payment structure also affected the provision of therapy services. This paradigm shift in provision of services within the skilled nursing environment created lasting effects across multiple levels. Originally intended to be a cost-saving measure, the overall volume and intensity of rehabilitation services was found to remain relatively constant before and after PPS implementation (Grabowski, Afendulis, & McGuire, 2011; White, 2003). Kennedy, Maddock, Sporrer, and Greene (2002) cited the changes in billing per minute (versus the customary fifteen minute billing unit) as evidence that under the PPS system clinicians would be more accountable for their intervention time and that discernible outcome differences would be seen based on total therapy treatment time. Surveyed occupational therapy personnel described concerns related to quality of care and productivity expectations under the PPS system, and demonstrated a significant decrease in provision of client-centered interventions such as activity of daily living (ADL) retraining and cognitive-perceptual interventions as compared to pre-PPS billing (Kennedy et al., 2002). Giffin (2000) examined potential ethical issues for physical therapy clinicians that could arise from provision of services under the PPS system, including scenarios related to minimal billing to meet resource utilization groups (RUGs) categories and REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 7 underutilization of therapists for provision of direct patient care in an effort to minimize costs. Kennedy et al. (2002) also hypothesized that changes in billing structure would impact expectations for frequency, duration and documentation of therapy services. Harrison and Kuhlemeier (2000) explored clinician manager usage of financial and efficiency indicators as a part of their management strategy for planning and provision of PPS therapy services within the SNF setting. They noted significant differences across the OT, PT and ST disciplines with the diversity of indicators utilized to effectively monitor and manage therapy service provision. Billing and coding correctly for therapy interventions under the changed policies was cited as being instrumental in determining reimbursement and continued ability to provide therapy services to patients (Erhart, Delehanty, Morley, Pickens, & Greene, 2005). Within the past decade, clinically appropriate billing for therapy services provided under a skilled rehabilitation stay have continued to be cited as a concern for payers, as noted in the Office of Inspector General (OIG) report published in December 2010. The OIG (2010) identified 348 SNFs with questionable billing (p. ii) and cited a significant increase in billing of higher paying RUGs from 2006 to 2008, with the highest RUG frequency increasing from 17% to 28% of total RUGs billed. These concerns were echoed in the 2012 and 2014 OIG Work Plans (OIG, 2012, 2014). A significant policy change occurred with the implementation of the 2010 Affordable Care Act (ACA) and a shift toward appraising quality and efficiency of health care services using value-based purchasing (VBP) (Fisher & Friesema, 2013). For Medicare services, the ultimate goal of VBP programs is to incentivize reimbursement REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 8 for providers based on efficient use of resources, provision of high-quality care, and achievement of positive patient outcomes (Fisher & Friesema, 2013, p. 503). The Centers for Medicare and Medicaid Services (CMS) implemented requirements for functional outcome reporting specific to therapy in 2013 through use of G codes to report functional changes during a Medicare Part B episode of care (CMS, 2012). More recent passage of the Improving Medicare Post-Acute Care Transformation (IMPACT) Act of 2014 provided a framework for the gradual development and implementation of reporting mechanisms to gather more extensive patient assessment data, quality measures, and resource use measures for Medicare beneficiaries across the post-acute setting (Dejong, 2016). Changes needed for therapy documentation and billing in response to new quality measures and reporting requirements necessitate continuous updates to training and education of clinicians so they can understand and comply with the programs. Frequent reinterpretations and changes to the Medicare Benefit Policy Manual result in changes to the broadly defined term medical necessity of services in efforts to explain what is or is not covered by a payer. Medicares interpretation of medical necessity may or may not align with the clinicians opinion regarding the actual reasonableness of the service to meet the patients medical needs (Granger et al., 2009; Lee, 2012). The term medical necessity can have such varied meanings across services and practice settings that its interpretation is often challenging and can make documentation training particularly difficult. Interpretation and application of medical necessity standards may also influence a practitioners clinical reasoning and documentation skills, resulting in a different set of standards to guide clinical decisions during treatment versus the reasoning presented in documentation to third party payers REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 9 (Jongbloed & Wendland, 2002). Therapy documentation must meet the requirements for medical necessity as well as requirements dictated by Medicare policy for signatures, supervision of therapy assistants, claims form submission, and reimbursement. This wide variety of requirements can result in a significant training and compliance challenge for providers and managers of therapy services to help OT, PT, and SLP clinicians stay current (Ciavarella, 2012). Anemaet, Krulish, Lindstrom, Herr, and Carr (2004) indicated that physical therapy clinicians were increasingly challenged under the PPS reimbursement model by external, non-clinical and professional factors (p. 550) that impacted clinician ability to effectively plan and implement therapy services. Sieck, Lohman, Stupica, MinthorneBrown, and Stoffer (2017) found that occupational therapy practitioners felt similar challenges with staying up-to-date regarding policy changes and reimbursement requirements impacting their daily practice. Occupational therapist participants reported they relied heavily on their contract therapy company employer for provision of updates and training related to changing Medicare guidelines and rarely sought out independent resources beyond those provided by their employer (Sieck et al., 2017). This challenge to help clinicians meet the continually evolving requirements of Medicare for documentation and reimbursement has been echoed by physicians and nurse practitioners as a significant concern in their practice as well (Sa, Cohen, & Marculescu, 2001; Towers, 2013; Zuzelo et al., 2004). Prior studies examining clinician knowledge related to reimbursement have focused on several distinct areas of clinician knowledge: billing and coding expertise; awareness of costs for ordered procedures; documentation requirements; and Medicare structures, processes and policies. A limited number of REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 10 studies explored clinician knowledge and expertise as they related to reimbursement requirements and guidelines. Despite the limited number of studies in this area, there were consistent trends related to analysis and discussion of influencing factors. These influencing factors crossed disciplines and practice settings in the studies reviewed. Knowledge of billing and coding expertise, including Current Procedural Terminology (CPT), was explored with nurse practitioners (Sa et al., 2001) and physicians practicing internal medicine and pediatrics (Adiga, Buss, & Beasley, 2006; Andreae, Dunham, & Freed, 2009) to determine both basic knowledge of requirements and accuracy of billing. Attitudes and beliefs regarding the importance and relevance of billing and coding knowledge influenced the accuracy and clinical decision-making of nurse practitioners and hospital physicians (Pilkinton & Brustman, 2014; Sa et al., 2001). Experience also proved an influencing factor on billing and coding knowledge of medicine and nursing participants. Adiga et al. (2006) found a significant correlation between self-assessed level of knowledge and tested scores related to Medicare billing and reimbursement with second year internal medicine residents, while Lee et al. (2007) found mean scores related to CPT billing and coding knowledge were highest amongst nurse practitioners with 11-15 years of practice experience. Several studies examined physician awareness of the costs for procedures and testing and the impact of their awareness on clinical decision-making (BroadwaterHollifield et al., 2014; Lee, Sai, & Turner, 2007; Pilkinton & Brustman, 2014). Broadwater-Hollifield et al. (2014) found only 37.3% of their survey respondents could estimate reimbursement rates for medical services within 50% of the actual rate, and 65% of emergency physicians surveyed indicated they felt they had inadequate knowledge of REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 11 medical procedure costs, which correlated with the tested knowledge of costs included as part of the survey. Lee et al. (2007) also found a significant knowledge deficit related to prescription drug and billing guidelines among surveyed medical students, residents and attending physicians. While experience did not seem to influence tested knowledge of hospital billing costs between residents and attending physicians, the more experienced attending physicians reported significantly higher incidence of allowing the costs of tests and procedures to influence their clinical decision-making than did their residency counterparts (Pilkinton & Brustman, 2014). The impact of successful documentation and the consistency between documentation and provision of services provided has been explored across multiple disciplines, including medicine, nursing, occupational therapy and physical therapy. Challenges identified by these studies consistently related to the quality and thoroughness of the documentation as well as the importance of clinician familiarity with the specific regulations governing the services they provided (Ciavarella, 2012; Coffman, 2003; Granger et al., 2009; Samuels & Fetzer, 2009; Thomesen, 1996; Yount et al., 2014). Knowledge specific to Medicare structures, processes and policies was examined among surveyed clinical nurse specialists with noted deficits in essential knowledge evidenced by an average percentage correct score of 62.7% (Zuzelo et al., 2004). Self-assessment of expertise and perception of competence with knowledge of reimbursement guidelines was shown to correlate with tested knowledge of Medicare billing and reimbursement guidelines with internal medicine residents and clinical nurse specialists (Adiga et al., 2006; Zuzelo et al., 2004). REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 12 Training and education related to billing, coding, reimbursement and documentation guidelines can occur at all levels of education and employment. Several studies further examined participants perception of the adequacy of their training within the reimbursement-related knowledge area being addressed. Results indicated that between 66% and 81% of surveyed clinicians felt (and their knowledge scores supported) that both academic and post-academic training related to reimbursement was inadequate. This lack of knowledge undermined their ability to make clinically and fiscally responsible decisions on behalf of their patients (Adiga et al., 2006; Andreae et al., 2009; Zuzelo et al., 2004). Ultimately, clinician knowledge of Medicare regulations and guidelines impacts compliance, patient care, accuracy with documentation/billing/coding of services and overall success with reimbursement. Previous research examined the knowledge of reimbursement and factors impacting reimbursement competency for nurses, nurse practitioners, and physicians, but limited studies have examined rehabilitation professional (OT/PT/SLP clinician) knowledge of Medicare documentation and reimbursement guidelines. There exists a potentially significant negative financial impact for non-compliance with Medicare guidelines, and stakeholders such as SNFs, therapy providers, and clinicians have a vested interest in ensuring compliance with these regulations to support reimbursement. Research to highlight awareness of current knowledge of Medicare documentation and reimbursement guidelines among OT, PT, and SLP clinicians and to identify potential predicting factors for this knowledge can help employers improve and target learning opportunities for clinicians to make the largest positive impact. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 13 Method This study examined OT, PT, and SLP clinician manager perceived and actual knowledge regarding Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting. Prior to the start of the study, the University of Indianapolis Human Research Protections Program determined the study was exempt from Institutional Review Board review. Study Design This cross-sectional study utilized an online survey to collect data between 4/10/2017 and 5/1/2017. Clinician managers were surveyed about their perceived knowledge of Medicare documentation and reimbursement guidelines followed by a test of their actual knowledge. Survey results were assessed across participants and analyzed to identify any significant relationships and predictors of performance across multiple demographics. Participants Participants were OT, PT and SLP clinician managers practicing within the skilled nursing facility rehabilitation setting. They were recruited from a large national contract rehabilitation therapy provider. Criteria. Inclusion criteria included: (a) employed as Area Directors of Operations (ADOs), Market Program Directors (MPDs), single-site Program Directors (PDs), and Rehab Clinical Leaders (RCLs), and performing within a clinician manager role at the time of survey initiation, defined as overseeing a rehabilitation department or departments within the companys contracted skilled nursing facilities; (b) clinician manager participants had to be OT, PT or SLP clinicians (thereby excluding non-clinician REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 14 managers found in a small number of the contracted facilities), and could be therapists or assistants ; and (c) clinician manager participants had to be able to access corporate email via computer to utilize the link to the survey. Participating clinician managers could have varying levels of experience within that role, and years of experience as a clinician manager was part of the demographics requested. Exclusion criteria included: (a) nonclinicians performing the clinician manager role; and (b) acting clinician managers from another practice setting (such as hospital-based therapy services or exclusively outpatient settings) who were filling in temporarily for the SNF clinician manager position. Clinician Manager Roles. Titles for manager positions included the following: Area Director of Operations (ADO), overseeing regional operations of 20-50 facilities; Rehab Clinical Leader (RCL), overseeing day-to-day clinical operations within a single facility; Market Program Director (MPD), overseeing administrative and clinical operations of 2-10 facilities each managed by an RCL; and single-site Program Director (PD), independently overseeing administrative and clinical operations at a single facility. Additional survey respondents included divisional vice presidents and clinical performance specialists. Sampling Convenience sampling strategy was used. Participants were identified using internal corporate email and facility information to select clinician managers who met the inclusion criteria at the time of the survey initiation. Participation in this study was voluntary and anonymous, conducted via online survey. Similar survey studies have ranged in sample size from 97 to 1200 participants. Based on the geographical variability and number of possible participants, use of this large sample pool could possibly be REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 15 described as leaning more towards a probability sample, and the number would be similar in size and scope to a professional organization membership sampling frame. Sample size, as determined using a 95% confidence interval and a 5% sampling error, would be approximately 287 completed responses (Creative Research Systems, Petaluma, CA). This would require a survey response rate of at least 25% of the 1135 surveys requested. Procedures Individuals identified as possible participants received a recruitment email (see Appendix A) stating the purpose of the study and containing the link to the online survey. Inclusion criteria were listed in the email and responses indicating exclusion criteria were not used (see Appendix B). An estimate of the time necessary to complete the survey was also given. Responses were accepted for three weeks following the initial survey email. Two follow-up email reminders were also sent to the participant distribution list during the course of the survey (at one week and two weeks following the original request) to maximize the response rate. Confidentiality was maintained by the reporting of all responses in aggregate. A submitted online survey was considered consent to participate in the study. Participants were asked to complete the Medicare guideline questions without the use of any additional resources. The Qualtrics [2017]survey software (Qualtrics, Provo, UT) independently and anonymously tracked responses to ensure respondents completed only one survey by preventing multiple submissions from the same internet protocol (IP) address. Results were forwarded to the researcher after IP addresses were removed to ensure confidentiality of responses. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 16 Questionnaire Development The self-administered three-part survey questionnaire used in this study was created by the researcher. In Part 1, the following demographic data were collected: geographic region of practice, gender, years of experience as a clinician, years of experience within the skilled nursing facility setting, years of experience within current clinician manager role, clinical specialty/discipline(s), degree/level of education, preferred learning style, and whether their clinical degree curriculum included coursework related to Medicare regulatory and/or documentation requirements. Part 2 included questions asking participants to rate the following using a 5-point Likert-like scale: (a) confidence with their perceived level of knowledge regarding Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting (rated from highly confident to not confident at all); (b) perceived level of knowledge regarding Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting as compared to other clinician managers (from much higher than other clinician managers to much lower than other clinician managers); (c) perceived level of knowledge regarding Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting as compared to other non-management/staff clinicians (from much higher than other non-management/staff clinicians to much lower than other non-management/staff clinicians); and REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 17 (d) satisfaction with previous training regarding Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting (from highly satisfied to not satisfied at all). Part 3 included 18 closed-ended questions designed to test each participants current knowledge of Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting. Part 3 produced a total knowledge score (between 0 and 18) based on the number of correct answers. Content Validity of the Medicare Knowledge Quiz Content validity of Medicare-related knowledge questions was determined using review by content specialists during questionnaire development. A pilot survey was issued to a group comprised of two SNF documentation auditors, three clinician managers with extensive documentation experience, a Medicare Fraud Consultant with the Department of Justice, and six rehabilitation denial/appeal specialists. This expert group possessed 15-30 plus years of experience in the skilled nursing rehabilitation environment and their expertise ensured that Part 3 questions reflected current knowledge considered necessary for clinicians in this practice setting. Pilot participants were asked to rate questions based on difficulty and content. Final draft of questions was submitted to AOTA, APTA, and ASHA for review and comment. The final Medicare quiz included three sections: questions related to Medicare Part A therapy regulations, questions related to Medicare Part B therapy regulations, and questions related to therapy documentation regulations in general. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 18 Statistical Analysis Data were analyzed using IBM SPSS Statistics for Windows, Version 24.0 (IBM Corp., Armonk, NY). Descriptive statistics were conducted on the total sample. Categorical variables are reported as frequency and percentage while continuous variables are reported as mean and standard deviation or median and interquartile range, depending on whether the data were normally distributed. Normality of data was determined using the Shapiro-Wilk test. Bivariate and multivariate comparisons were conducted on clinician manager demographic variables and clinician manager perceived knowledge scores to look for differences in or correlation with actual knowledge scores. Nominal variable comparisons were conducted using the Mann-Whitney U test or Kruskal-Wallis test. Post hoc tests using a Bonferroni correction were conducted for all statistically significant KruskalWallis test results. Continuous variable correlations were conducted using the Spearman rho correlation. Any participant characteristic found to demonstrate a significant difference in or a significant correlation with (p < .05) actual knowledge scores was further analyzed to determine if they were significant predictors of participant knowledge scores. The strength of correlation coefficients was interpreted as: r = .00 - .30, negligible; r = .30 - .50, low; r = .50 - .70, moderate; r = .70 - .90, high; r > .90, very high (Hinkle, Wiersma & Jurs, 2003). Finally, multiple linear regression analysis using manual procedures was used to model the predictors of Medicare knowledge. Explanatory variables that demonstrated a statistically significant difference or correlation with the overall actual Medicare knowledge score were introduced into the regression model simultaneously using the REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 19 Enter method. Data screening and preliminary analyses were performed to confirm assumptions of normality, linearity, multicollinearity, and homoscedasticity. All tests were two-tailed, and an alpha level of .05 was considered statistically significant. Results A total of 1135 possible respondents received recruitment emails for the study. Following the three-week sampling timeframe, 439 responses were received. Ten responses from non-clinicians were excluded, and 55 responses contained incomplete answers to the Medicare quiz portion of the survey. One single choice quiz item had two possible correct answers which were combined for analysis purposes. After exclusion criteria were applied, final responses for analysis totaled 374, meeting sample size criteria for a 95% confidence interval and a 5% sampling error (>287 completed responses) and demonstrating a 33% survey response rate (Creative Research Systems, Petaluma, CA). Respondent Characteristics Demographics. Table 1 illustrates demographic information for survey respondents. Respondents were split fairly evenly over five distinct disciplines, with only three respondents reporting a dual degree. Approximately one-third (33.4%) of respondents held an associate degree as an assistant (OTA and PTA), while 20.1% held a bachelor degree, and 37.2% held a masters degree. Less than 10% of respondents held degrees at the doctorate level. A majority of respondents (70.3%) were clinician managers over a single site facility (single-site PD and RCL). Over a quarter of respondents (27.5%) held clinician manager roles over multiple facilities (MPD and ADO), and remaining respondents were executive managers (1.1%) and operational consultants (0.8%). Over half the respondents (53.5%) reported working in sites in the REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 20 Midwest, but overall geographic distribution was largely consistent with contracted facility locations (Figure 1). Finally, female respondents significantly outnumbered males at 82.9%, but this ratio does reflect current national trends within the OT, PT, and SLP clinician population. Experience. Respondents were experienced clinicians, with approximately 70% of respondents reporting more than 10 years of clinical experience (M = 16.43, SD = 8.63), and nearly 60% of respondents reporting more than 10 years of experience in the SNF practice setting (M = 12.89, SD = 6.77). However, many respondents were very new to the clinician manager role (M = 8.18, SD = 6.83), as evidenced by 31.3% reporting only 0-3 years in their current manager role. Table 2 shows a breakdown of clinician manager role into therapist and assistant by years of experience within that manager role. Training history and learning preferences. Only 30.5% of respondents reported that training related to Medicare guidelines for documentation and reimbursement was included as part of their degree curriculum (Table 3). Of those who reported this training during their clinical education, only 8% were speech pathology clinicians, and 75.0% reported their training occurred within an associate or master level degree program. The vast majority of respondents (72.2%) reported they received less than five hours during the past five years. In contrast, 30.5% of respondents reported receiving 10 or more hours of formal training on this topic from their employer during the same timeframe. Respondents identified the most popular preferred learning style as employer-provided training (34.0%), followed by continuing education courses (29.4%). REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 21 Objective 1: Perceived Knowledge of Medicare Documentation and Reimbursement Guidelines The first three questions in the self-assessment portion of the survey sought to establish participants perceived level of knowledge related to Medicare for documentation and reimbursement. Internal consistency for self-assessment questions 1-3 was established with .77 coefficient. A fourth question requested feedback regarding satisfaction with previous training related to this subject matter. Responses to the four questions can be found in Table 4. Most clinicians were confident in their knowledge of Medicare guidelines, perceived their knowledge of the guidelines to be higher compared to other clinician managers and non-clinician managers, and were at least satisfied with previous training they had received on the guidelines. A total perceived knowledge score was calculated by adding the Likert response scores together for questions 1-3. Total scores ranged from four to 15 (of 15 possible points) with a median of 12 points (IQR = 2). Objective 2: Actual Knowledge of Medicare Documentation and Reimbursement Guidelines Ten questions on the quiz were missed by 30% or more of respondents, and five questions were missed by more than half of respondents (Table 5). Raw scores for correct responses on each of three quiz sections (Medicare Part A, Medicare Part B, and Documentation) and the overall score (out of 18 total questions) were converted to percentages. Respondent Medicare Part A scores ranged from 16.67% to 100% (Mdn = 66.67%; IQR = 16.67%); Medicare Part B scores ranged from 0% to 100% (Mdn = 66.67%; IQR = 33.33%); Documentation scores ranged from 0% to 100% (Mdn = REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 22 66.67%; IQR = 33.33%); and total overall scores ranged from 27.78% to 100% (Mdn = 66.67%; IQR = 22.22%). These percentages were used as a possible predictor of actual knowledge scores. Objective 3: Predictors of Actual Knowledge of Medicare Documentation and Reimbursement Guidelines Clinician manager demographics. A Spearman rho correlation was conducted to assess the relationship between non-categorical demographic characteristics and actual knowledge of Medicare guidelines in survey respondents. A positive low correlation was found between overall Medicare knowledge score and years of experience in current role (rs (374) = .36, R2 = .13, p < .001). Years of experience in SNF (rs (374) = .27, R2 = .07, p < .001) and years of experience as a clinician (rs (374) = .18, R2 = .03, p < .001) were found to significantly correlate with the overall Medicare knowledge score but had only a negligible relationship. Significant differences in actual knowledge scores were found for several of the clinician manager characteristics that were collected. Gender: Female respondents had a higher median score than the male respondents (66.67% versus 61.11%) with the differences in the scores being statistically significant (U = 7594.50, p = .023). Level of education: Median scores increased as degree level increased from associate degree (61.11%) to bachelor degree (66.67%) to masters degree (72.22%). However, respondents with a doctorate degree had a median score equal to that of those with a bachelor degree (66.67%). The differences among the scores was found to be statistically significant (2(4) = 26.93, p < .001). REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 23 Current clinician manager role: Median scores improved as the complexity of the respondent manager role increased from RCL (61.11%) to single-site PD (66.67%) to MPD and ADO (72.22%), 2(5) = 38.479, p < .001. Hours of employer-sponsored formal training related to Medicare guidelines: Respondents reporting less than two hours of training scored the lowest (Mdn = 61.11%). The difference in scores by the categories was statistically significant (2(4) = 11.37, p = .023). However, no specific trends for improved Medicare knowledge score were seen with increased amounts of training, as median scores remained consistent across remaining categories: no training (66.67%); 2-5 hours (66.67%); 5-10 hours (66.67%); and 10 or more hours (66.67%). Clinical discipline: Initial analysis included grouping of one respondent who reported dual OT and PTA degrees into the OT category, and two respondents who reported dual OTA and other (non-therapy) degrees into the OTA category. Median scores were found to be identical for OTA and PTA respondents (Mdn = 61.11%, IQR = 16.67%), so OTA and PTA categories were combined into a single assistant group. Similarly, a significant difference was not found between OT, PT, and SLP scores [Mdn (IQR) = 66.67% (16.67%), 69.44% (16.67%), 72.22% (16.67%), respectively; p = .691], so therapist categories were also combined into a single therapist group. The assistant clinician group (OTA/PTA) had a lower median score (61.11%) than the therapist clinician group (66.67%) and the difference in scores was statistically significant [2(1) = 17.73, p < .001].. Finally, respondents were grouped into three clinical specialty categories (OT/OTA, PT/PTA, and SLP) and knowledge scores were compared. A REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 24 statistically significant difference was not found [Mdn (IQR) = 66.67% (22.22%), 66.67% (18.06%), 72.22% (16.67%), respectively; 2(2) = 4.27, p = .118]. A significant difference was not found for overall Medicare knowledge score by geographic region (p = .252), hours of non-employer-sponsored training (p = .671), preferred learning style (p = .538), or reported Medicare-related training in degree curriculum (p = .059). Perceived knowledge of Medicare documentation and reimbursement guidelines. A statistically significant positive but low correlation was found between overall actual Medicare knowledge scores and perceived knowledge scores (rs (374) = .37, R2 = .14, p < .001). Multiple linear regression. Multiple linear regression was performed to determine if clinician manager characteristics or their perceived knowledge of Medicare documentation and reimbursement guidelines could be used to predict their actual knowledge of Medicare documentation and reimbursement guidelines. The variables that were significantly correlated with or differed in knowledge scores were entered into the model. Linearity was assessed by visual inspection of partial regression plots and a plot of studentized residuals against the predicted values. Multicollinearity was determined to be present if a correlation coefficient was > .80 and tolerance values were > 0.10 (Field, 2013). Multicollinearity was present between years of experience in SNF, years of experience as a clinician, and years of experience in current clinician manager role. Based on the bivariate correlation results, years of experience in current clinician manager role had a slightly higher correlation with actual knowledge scores, therefore, it REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 25 was entered into the model and years of experience as a clinician and within the SNF setting were removed. Multiple regression analysis showed an independence of residuals, as assessed by a Durbin-Watson statistic of 1.88. There were no leverage values greater than 0.2, and no values for Cooks distance above 1 (Field, 2013). There were two studentized deleted residuals greater than 3 standard deviations (two cases had an overall knowledge score of 33.33% at 3.05 and 3.06 SD) but these were felt to be significant to the overall analysis and therefore left in the model. Residuals were approximately normally distributed as visualized on histogram and P-P Plot. Homoscedasticity was confirmed by visual inspection of a plot of studentized residuals versus unstandardized predicted values. In the final model, gender, perceived knowledge score, level of education, current clinician manager role, and years of experience in current role significantly predicted overall actual Medicare knowledge scores as follows: Predicted overall Medicare knowledge score was found to be 4.26% higher for female respondents than male respondents. Predicted overall Medicare knowledge score increased by 1.82% for each increase of one point (out of 15 possible) in perceived knowledge score. Predicted overall Medicare knowledge score increased by 1.52% as level of education increased by degree level. Predicted overall Medicare knowledge score decreased by 1.26% as clinician manager role narrowed in complexity to the single facility level (ADO down to RCL level). REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 26 Predicted overall Medicare knowledge score increased by 0.35% for each year of experience in current manager role. All five variables added statistically significantly to the prediction, p < .05 and together accounted for nearly 21% of variance, F(5,366) = 20.65, p < .001, R2 = .21. Regression coefficients and standard errors can be found in Table 6. Discussion As discussed, clinician knowledge of Medicare regulations can impact compliance, patient care, accuracy with documentation, billing, and coding of services, and overall success with reimbursement. Non-compliance with current regulations carries the potential for significant negative consequences at all levels of care provision, from executives within a SNF provider down to the therapy clinician providing the services. This study focused on examining the perceived and actual knowledge of OT, PT, and SLP clinician managers related to Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting. The overall scores for the Medicare knowledge quiz highlighted a persistent deficiency in knowledge across participants. Questions missed by 30% or more of respondents were spread almost evenly across question type (Medicare Part A, Medicare Part B, and documentation), indicating no consistency with the type of guideline being misunderstood. However, six of the ten most frequently missed questions had a single incorrect answer as the most popular response meaning clinician managers may be misinformed with the same incorrect information about those particular guidelines. For example, 77.3% of respondents incorrectly identified the treatment scenario for concurrent therapy (Documentation, Question 17) with the answer describing group REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 27 therapy. Under the Medicare Part A questions (Question 2), 47.1% of respondents incorrectly identified that individual certification of each individual therapy plan of care is required under a Medicare Part A rehabilitation stay, instead of completion of the facility certification/recertification only. These tendencies towards large numbers of respondents selecting the same incorrect answer are indicative of the widespread misinformation regarding these guidelines and the need for continued efforts to teach and train as changes in regulations occur. As clinician managers are often integral to training of staff clinicians, results also indicate clinician managers may not have sufficient grasp of the knowledge to effectively train their clinical teams, possibly leading to further issues with compliance and reimbursement. Demographic characteristics of participants were collected to investigate if Medicare knowledge could be predicted by clinician manager characteristics. Significant variance between subgroups was expected and found for levels of experience (years total, years within the SNF setting, and years within current clinician manager role). In addition, significant variance was found between subgroups for gender, practitioner level, level of education, current clinician manager role, and hours of employer-sponsored training. Analysis of these characteristics further as coefficients within the regression model showed that education level and clinician manager role impacted the overall Medicare knowledge score nearly as much as the self-assessed perceived knowledge score. Although it may be expected that clinician managers with advanced educational degrees and more complex manager roles would be anticipated to show increased Medicare knowledge, it was interesting to note that gender appeared to have the largest REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 28 impact on overall Medicare knowledge score prediction within the regression model. Within related literature reviewed for this study, gender was not studied as a predictor of performance for knowledge of billing, coding, and documentation guidelines. However, as the sample and the general clinician population are skewed heavily female, this difference in performance may be related more to the ratio of responses from male participants than to any significant knowledge gap between genders. Though significant, perceived knowledge scores showed only a low correlation with actual Medicare knowledge scores, indicating that self-assessment or self-report by clinician managers of their perceived knowledge of Medicare guidelines should perhaps not be used in isolation to determine competency. This correlation also suggests that insight at the clinician manager level is perhaps not as clear as it pertains to this subject as it may be for other management skills. Implications for future study may include analysis of perceived and actual knowledge pre- and post-training related to Medicare documentation and reimbursement guidelines to see if specific trainings promote improvements in both self-awareness and knowledge. Years of experience in the current clinician manager role also showed a low positive correlation with actual Medicare knowledge scores, indicating that clinician managers performed better the longer they reported having worked in their current manager position. Breakdown of clinician manager role by discipline showed that the percentage of therapy assistants within the role increased and years of manager experience decreased as the role narrowed focus from multi-site to single facility level (Table 2). Inexperienced clinician managers in their first three years of practice may be especially vulnerable to mistakes and misconceptions about Medicare guidelines. Based REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 29 on the significant variance in knowledge found by this study between assistants and therapists, it may benefit contract rehab providers to ensure that clinician managers with less experience, particularly those with associate level backgrounds, receive mentoring and training from more seasoned managers to promote improved understanding of Medicare guidelines impacting clinical practice and reimbursement within their facility. Finally, recent research has noted that occupational therapists in the SNF setting may rely heavily on their employer to provide necessary updates and information regarding regulatory changes impacting practice (Sieck et al., 2017). Although employer-sponsored training was excluded from the final regression model, it is worth noting that analysis of the overall Medicare knowledge score across the ranges of hours of employer-sponsored training showed no specific range of training time that seemed to significantly impact overall Medicare knowledge scores. Scores were lowest in participants who reported less than two hours of formal training but median scores for respondents reporting no training rivaled those of other respondents reporting five or more hours of training. As employers often invest a great deal of time, energy, and resources into training activities for clinical staff, these results indicate that increased training could be more beneficial overall, but the content and approach may need to be continually updated to reflect and correct previously mentioned misconceptions. Limitations The sample for this study was taken exclusively from employees of a single, national contract rehab therapy provider, and may not be representative of the entire population of OT, PT, and SLP clinician managers working in SNF settings across the country. However, the general ratio of male to female clinicians roughly correlated to the REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 30 ratios reported within the OT, PT, and SLP professions. Although numbers were not readily available to compare the ratio of clinicians across disciplines within this practice setting on a national level, participants in the sample were fairly evenly distributed and responses should not be skewed based on significantly higher response from exclusively one discipline. The sample was heavily distributed in the Midwest due to the large number of contracted facilities in that region. Finally, the survey instrument did not have reliability and validity established beyond the content validity previously discussed. Conclusion Knowledge of Medicare documentation and reimbursement guidelines specific to rehabilitation services is essential for successful therapy provision within the SNF setting. However, this study did not provide a strong single predictor for actual Medicare knowledge scores indicating there is not a simple way to use the demographics of OT, PT, and SLP clinician managers to predict their understanding of Medicare documentation and reimbursement guidelines in this setting. Data from this study could be further analyzed to explore in greater detail the trends of incorrect responses for Medicare quiz questions across demographic subgroups to better inform providers of possible reasons for misinterpretation of guidelines. Some participants contributed qualitative comments and information regarding the survey questions that could be explored further in a future study. Adding further detail and a qualitative component to the Self-Assessment (Part 2) section for Perceived Knowledge may help provide better insight into how clinicians assess their own knowledge of Medicare guidelines. Further research would also be advised to explore non-manager REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 31 clinician knowledge with these guidelines as individual clinicians also have a professional responsibility to maintain competency with regulations that affect practice. This study provided an opportunity to assess OT, PT, and SLP clinician manager knowledge of Medicare documentation and reimbursement guidelines and the results indicate that rehabilitation managers may not fully understand or have clear insight into their own limitations with this subject matter. This research provides insight into how clinician managers obtain, utilize, and communicate information regarding Medicare documentation and reimbursement guidelines to promote best practice in the SNF rehabilitation setting. Knowing the base level of understanding for this information can help guide educators and providers in structuring trainings to limit the spread of misinformation and help keep clinicians well-informed. Ultimately, therapy providers can only deliver SNF therapy services to meet the needs of the aging population if they clearly understand the billing and documentation requirements necessary for successful reimbursement of those services. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 32 References Accreditation Council for Occupational Therapy Education. (2012). 2011 Accreditation Council for Occupational Therapy Education (ACOTE) standards. 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(2012). Work plan for fiscal year 2012. Department of REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 37 Health and Human Services. Retrieved from http://oig.hhs.gov/reports-and-publications/archives/workplan/2012/Work-Plan2012.pdf Office of Inspector General. (2014). Work plan for fiscal year 2014. Department of Health and Human Services. Retrieved from http://oig.hhs.gov/reports-and-publications/archives/workplan/2014/Work-Plan2014.pdf Pilkinton, M., & Brustman, L. (2014). A survey of physician knowledge and attitudes on hospital billing costs. Obstetrics & Gynecology, 123(Suppl 1), 20S-21S. doi:10.1097/01.AOG.0000447278.43379.a5 Qualtrics Labs, Inc. (2017). Qualtrics Research Software (Version 4.17) [Software]. Provo, UT. Rapsilber, L., & Anderson, E. (2000). Understanding the reimbursement process. Nurse Practitioner, 25(5), 36, 43, 46, 51-56 passim. Ries, E. (2014). Addressing the 'biggest threat' to physical therapy. PT in Motion, 6(1), 34-42. Robin, D., & Gershwin, R. (2010). RAC attack--Medicare recovery audit contractors: What geriatricians need to know. Journal of the American Geriatrics Society, 58(8), 1576-1578. doi:10.1111/j.1532-5415.2010.02974.x Sa, T., Cohen, J., & Marculescu, G. (2001). Nurse practitioners' attitudes and knowledge toward current procedural terminology (CPT) coding. Nursing Economic$, 19(3), 100-114. Samuels, J. & Fetzer, S. (2009). Pain management documentation quality as a REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 38 reflection of nurses' clinical judgment. Journal of Nursing Care Quality, 24(3), 223-231. doi:10.1097/NCQ.0b013e318194fcec Scott, J. A., & Camden, M. (2011). Recovery Audit Contractor medical necessity readiness: One health system's journey. Professional Case Management, 16(5), 232-239. doi:10.1097/NCM.0b013e31821ac720 Senft, D. J. (2010). Does your documentation support payment? Geriatric Nursing, 31(5), 365-367. doi:10.1016/j.gerinurse.2010.08.003 Senft, D. J. (2016). Certifying the medical necessity for skilled nursing and skilled therapy services. Geriatric Nursing, 37(2), 147-149. Sieck, R., Lohman, H., Stupica, K., Minthorne-Browne, L., & Stoffer, K. (2017). Awareness of Medicare regulation changes: Occupational therapists perceptions and implications for practice. Physical and Occupational Therapy in Geriatrics, 35(2), 67-80. doi:10.1080/02703181.2017.1288672 Thomesen, M. (1996). The resource utilization groups system of nursing home reimbursement policies: Influences on occupational therapy practice. American Journal of Occupational Therapy, 50(10), 790-797. Towers, A. L. (2013). Clinical documentation improvement--a physician perspective. Journal of AHIMA / American Health Information Management Association, 84(7), 34-41. White, C. (2003). Rehabilitation therapy in skilled nursing facilities: Effects of Medicares new prospective payment system. Health Affairs, 22(3): 214-223. doi: 10.1377/hlthaff.22.3.214 Yount, K. W., Reames, B. N., Kensinger, C. D., Boeck, M. A., Thompson, P. W., REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 39 Forrester, J.D., & ... Lau, C. L. (2014). Resident awareness of documentation requirements and reimbursement: A multi-institutional survey. The Annals of Thoracic Surgery, 97(3), 858-864. doi:10.1016/j.athoracsur.2013.09.100 Zuzelo, P., Fallon, R., Lang, A., Lang, C., McGovern, K., Mount, L., & Cummings, B. (2004). Clinical nurse specialists' knowledge specific to Medicare structures and processes. Clinical Nurse Specialist: The Journal for Advanced Nursing Practice, 18(4), 207-217. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 40 Table 1 Respondent Demographics (N = 374) N % 77 75 64 86 69 1 2 20.6 20.1 17.1 23.0 18.4 0.3 0.5 125 75 139 15 17 3 33.4 20.1 37.2 4.0 4.5 0.8 21 82 123 140 4 3 5.6 21.9 32.9 37.4 1.1 0.8 26 7.0 37 9.9 Midwest (IA, IL, IN, KY, MI, MN, MO, ND, OH, WI) 200 53.5 Southeast (AL, FL, GA, NC, SC, TN, VA, WV) 54 14.4 56 15.0 60 310 4 16.0 82.9 1.1 Discipline Occupational Therapist (OT) Occupational Therapy Assistant (OTA) Physical Therapist Physical Therapist Assistant (PTA) Speech Language Pathologist OT/PTA dual degree OTA/other dual degree Degree Level of Education Associate Bachelor Master Entry-level doctorate Post-professional doctorate Research doctorate (PhD, EdD, etc) Current Clinician Manager Role Area Director of Operations Market Program Director Single-site Program Director Rehab Clinical Leader Vice President Operations Consultant Geographic Region West (AK, AZ, CA, CO, HI, ID, MT, NM, NV, OR, UT, WA, WY) South/Central (AR, LA, NE, OK, MS, ND, SD, TX) Northeast (MD, DC, DE, PA, NJ, NY, MA, CT, RI, VT, NH, ME) Gender Male Female Prefer not to answer REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES Figure 1 Geographic Distribution of Targeted Participant Facilities (Retrieved from http://www.rehabcare.com/careers/locations/) 41 REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 42 Table 2 Clinician Manager Experience by Role Area Director of Operations N=21 76 Market Program Director N=82 65 Single-site Program Director N=123 54 Rehab Clinical Leader N=140 44 % Therapist (OT, PT, SLP) % Assistant 24 35 46 56 (OTA, PTA) Years in current manager role by % 19 < 5 years 33 38 31 63 5-10 years 38 24 34 18 10-15 years 34 29 18 Note: OT = occupational therapist, OTA = occupational therapy assistant, PT = physical therapist, PTA = physical therapist assistant, SLP = speech language pathologist REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES Table 3 Respondent Training History and Learning Preferences Preferred Learning Style Independent study outside work Continuing education course Employer-provided training Computer-based training Professional organization conference Other Employer-Sponsored Training (within the past 5 years) None <2 hours 2-5 hours 5-10 hours 10 or more hours Non-Employer-Sponsored Training (within the past 5 years) None <2 hours 2-5 hours 5-10 hours 10 or more hours Medicare Guidelines Covered in Degree Curriculum Yes No Do not remember N % 3 110 127 66 48 18 8.0 29.4 34.0 17.6 12.8 4.8 15 52 112 72 114 4.0 13.9 29.9 19.3 30.5 79 101 90 60 41 21.1 27.0 24.1 16.0 11.0 114 180 55 30.5 48.1 14.7 43 REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 44 Table 4 Respondent Self-Assessed Rating of Perceived Knowledge from Part 2 of Survey Confidence with perceived level of personal knowledge regarding Medicare guidelines Not confident at all Slightly confident Somewhat confident Confident Very confident Perceived level of personal knowledge regarding Medicare guidelines compared to other clinician managers Much lower Lower About the same Higher Much higher Perceived level of personal knowledge regarding Medicare guidelines compared to non-manager clinicians Much lower Lower About the same Higher Much higher Satisfaction with previous training regarding Medicare guidelines Extremely dissatisfied Fairly dissatisfied Neither satisfied nor dissatisfied Fairly satisfied Extremely satisfied N % 1 13 57 193 110 .3 3.5 15.2 51.6 29.4 1 18 152 164 39 0.3 4.8 40.6 43.9 10.4 7 43 162 162 1.9 11.5 43.3 43.3 4 45 81 190 52 1.1 12.0 21.7 50.8 13.9 REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 45 Table 5 Questions missed by 30% or more of respondents Medicare A Questions Physicians certify therapy services under Medicare Part A skilled rehabilitation stays by: a. Completing the facility certification/recertification b. Completing individual certification of each individual therapy plan of care c. Physician certification of therapy services is not required under Medicare Part A d. None of the above e. To be honest, Im really not sure. The 7-day lookback for skilled Medicare Part A stays reviews the number of days/minutes of therapy provided during those 7 days to see if what kind of MDS assessment might be required? a. Change of Therapy (COT) assessment b. End of Therapy (EOT) assessment c. Start of Therapy (SOT) assessment d. Any of the above might be required e. To be honest, Im really not sure. According to Medicare Part A regulations, what is the level of supervision for a student providing treatment in a skilled nursing facility? a. Line of sight supervision b. Direct supervision as determined by the supervising therapist/assistant c. Off-site supervision, supervising clinician must be available by phone d. Students cannot independently provide and code treatment minutes under Medicare Part A e. To be honest, Im really not sure. % with wrong answer Other options chosen 47.1% (b)42% 54% (a)50% 59.9% (a)41.2% REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES Medicare B Questions The MAXIMUM timeframe a Medicare Part B therapy plan of care can be certified by the physician (before recertification would be required) is ____ days. a. 30 b. 60 c. 90 d. There is no maximum. The plan of care duration can be as long as the evaluating OT/PT/SLP deems appropriate. e. To be honest, Im really not sure. Modifier-59 is added to Medicare Part B therapy service charges to denote a separate and distinct procedural service. Which of the following is a situation where the -59 modifier should be used? a. A clinician performed manual therapy (97140) and therapeutic exercise (97110) during the same 15 minute block of time. b. A speech language pathologist provided dysphagia treatment (92526) and speech treatment (92507) on the same day. c. Physical therapy performed gait training (97116) on the same day that occupational therapy provided orthotics fitting of a hand orthotic (97760). d. None of these would require the -59 modifier. e. To be honest, Im really not sure. According to Medicare Part B regulations, what is the level of supervision for a student providing treatment in a skilled nursing facility? a. Line of sight supervision b. Direct supervision as determined by the supervising therapist/assistant c. Off-site supervision, supervising clinician must be available by phone d. Students cannot independently provide and code treatment minutes under Medicare Part B e. To be honest, Im really not sure. 46 39.3% (a)19.3% (d)12.6% 87.2% (a)14.2% (b)19% (d)17.6% (e)36.4% 42% (a)16.6% (b)21.7% REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES Documentation Questions Medicare requires that occupational therapy, physical therapy, and speech therapy plans of care contain which of the following: a. Amount, frequency, and duration of treatment to be provided b. Results of standardized tests performed on evaluation c. Legible handwritten signature (or validated electronic signature) and professional identity of individual who established the plan d. Answers a and b e. Answers a and c f. Answers b and c g. To be honest, Im really not sure Which of the below represents a way to correctly code and bill a 60-minute therapy session using the 8-minute rule? a. 60 minutes of dysphagia treatment (1 unit 92526) b. 20 minutes of therapeutic procedures (1 unit 97110), 20 minutes of therapeutic activities (1 unit of 97530), and 20 minutes of neuromuscular re-education (1 unit of 97112) c. 52 minutes of gait training (3 units of 97116) and 8 minutes of therapeutic activities (1 unit of 97530) d. Answers a and b e. Answers a and c f. Answers b and c g. To be honest, Im really not sure. Group therapy provided by one therapy clinician for multiple patients requires which of the following: a. Patients are performing different activities but working on similar goals b. Groups must contain at least 4 and no more than 6 patients c. Minutes are divided by number of group participants and coded as group minutes on the MDS for skilled Medicare Part A patients d. A 45 minutes group therapy session would be coded as 3 units of group therapy (97150 or 92508) for each participating Medicare Part B patient e. To be honest, Im really not sure 47 33.7% (d)25.9% 61% (c)17.4% (d)17.1% (f)11.2% 35.3% (d)11.8% REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES Which of the following treatment scenarios would be considered concurrent therapy: a. One clinician providing treatment to two patients at the same time; patients are performing same or similar activities b. A therapy student treating one patient and the supervising clinician treating another patient c. A clinician providing treatment to one patient while another patient receives treatment from a rehab aide d. Two clinicians providing therapy to a single patient during the same treatment session e. To be honest, Im really not sure Note: Correct response is underlined. 77.3% 48 (a)65.8% REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 49 Table 6 Predictors of Medicare Knowledge Score 95% CI Variable p (Constant) B SEB LL UL 34.03 5.57 23.08 44.98 Self-Assessment Score <.001 1.82 .35 1.12 2.51 Gender .006 4.26 1.55 1.21 7.31 Current Clinician Manager Role Level of Education .036 -1.26 .60 -2.44 -.08 .005 1.52 .54 .46 2.58 Years of Experience in <.001 .35 .10 .17 .53 Current Role Note: B = unstandardized regression coefficient; SEB = standard error of the coefficient; CI = confidence interval; LL = lower limit; UL = upper limit REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 50 Appendix A Recruitment Email to Participants Dear Clinician Manager, My name is Becky Finni and I am an Occupational Therapist and Appeal Specialist with RehabCare. I am conducting this research study as part of my completion of the Doctor of Health Sciences degree at the University of Indianapolis. The purpose of this research study is to better understand the knowledge base and expertise of Occupational Therapy (OT), Physical Therapy (PT), and Speech Language pathology (SLP) clinician managers regarding Medicare guidelines for documentation and reimbursement of rehabilitation services in the skilled nursing facility (SNF) setting. This survey should take no more than 10 minutes to complete. Your answers will help provide important information about current awareness and understanding of Medicare regulations utilized daily as part of managing a rehab department in a SNF setting. To date, little to no research has been conducted studying this critical piece of management expertise in the SNF setting. This survey is being sent to RehabCare clinician managers, including Area Directors of Operations (ADOs), Market Program Directors (MPDs), Program Directors (PDs), and Rehab Clinical Leaders (RCLs). Participation in this research is completely voluntary. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 51 Your individual responses will be anonymous and will not be shared with anyone, including your employer. As a token of appreciation, respondents who complete the survey will be given the option to enter into a drawing for one of 15 $25 Amazon or Visa gift cards. Estimated odds of winning are approximately 1 in 30. This research project has been reviewed and approved by the University of Indianapolis Human Research Protections Program. Please direct any questions or concerns about this study to Dr. Beth Ann Walker at walkerba@uindy.edu or Rebecca Finni at finnir@uindy.edu. If you are interested in participating in this study, please click the link below to begin the survey. Begin Survey Thank you in advance for your time and consideration. We look forward to your responses! Rebecca Finni, MS, OTR/L University of Indianapolis finnir@uindy.edu REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 52 Appendix B Inclusion Criteria Currently employed as Area Directors of Operations (ADOs), Market Program Directors (MPDs), single-site Program Directors (PDs), and Rehab Clinical Leaders (RCLs), and performing within a clinician manager role at the time of survey initiation, defined as overseeing a rehabilitation department or departments within the companys contracted skilled nursing facilities Must be an occupational therapy, physical therapy or speech language pathology clinician (thereby excluding non-clinician managers found in a small number of the contracted facilities), and could be therapists or assistants Must be able to access corporate email via computer to utilize the link to the survey Exclusion criteria Non-clinicians performing the clinician manager role Acting clinician managers from another practice setting (such as hospital-based therapy services or exclusively outpatient settings) who were filling in temporarily for the SNF clinician manager position REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 53 Appendix C Survey My name is Becky Finni and I am an Occupational Therapist and Appeal Specialist with RehabCare. I am conducting this research study as part of my completion of the Doctor of Health Sciences degree at the University of Indianapolis. Purpose: The purpose of this research study is to better understand the knowledge base and expertise of Occupational Therapy (OT), Physical Therapy (PT), and Speech Language pathology (SLP) clinician managers regarding Medicare guidelines for documentation and reimbursement of rehabilitation services in the skilled nursing facility (SNF) setting. Participants: This survey is being sent to all clinician managers, including Area Directors of Operations (ADOs), Market Program Directors (MPDs), Program Directors (PDs), and Rehab Clinical Leaders (RCLs). Participation in this research is completely voluntary. Survey: Time for completion is estimated to be less than 10 minutes. This survey will: 1) gather clinician manager demographic data; 2) ask you to rate your perceived level of knowledge regarding Medicare guidelines for documentation and reimbursement of rehabilitation services in the SNF setting; and 3) test your knowledge regarding REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 54 Medicare guidelines for documentation and reimbursement of rehabilitation services in the SNF setting through a series of 18 questions. This survey should be completed without the use of any additional resources, as it is meant to test your basic knowledge and awareness of Medicare guidelines. Responses: While answering every question is not mandatory, please answer to the best of your ability. You may choose to leave a question blank in Parts 1 and 2 of the survey. In Part 3, if you are unsure of the answer, please choose the last answer choice. Confidentiality: Your privacy and the confidentiality of your information will be maintained to the degree permitted by the technology used. To further protect your privacy, you should complete the following research activity in a private location (e.g., home, personal office, etc.) using a private device and a secure transmission/ communication system. Your participation in this online research project involves risks similar to a persons everyday use of the Internet. All survey responses will be kept completely confidential. Please do not include any personally identifying information (e.g. your name, initials, facility name) in your responses. All data will be stored on a password-protected computer, and submission of responses will be encrypted. The survey will not associate your internet protocol (IP) or email address with your responses. Only study researchers will have access to your responses and all demographic data will be reported in aggregate (individual demographics will not be reported). REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 55 Withdrawal: Participants may withdraw from this study at any time by exiting the survey or closing their browser window. Contacts: This research project has been reviewed and approved by the University of Indianapolis Human Protections Administrator, who has the responsibility of protecting the rights and safety of research participants. If you have questions about your rights or protections as a participant in this research project, then contact the Human Protections Administrator, Dr. Greg E. Manship, at manshipg@uindy.edu or (800) 232-8634, ext. 5774. Please direct any questions or concerns about this study to Dr. Beth Ann Walker at walkerba@uindy.edu or Rebecca Finni at finnir@uindy.edu. Consent: Your individual responses will be anonymous and will not be shared with anyone, including your employer. If you agree to participate in the study, please go to the next page to begin the survey. Thank you so much for your time! REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 56 Part 1 Demographics 1. Please identify the credential you are currently using for clinical practice (if you are currently working with more than one credential, please check all that apply): ____Occupational Therapist (OT) ____Occupational Therapy Assistant (OTA) ____Physical Therapist (PT) ____Physical Therapist Assistant (PTA) ____Speech Language Pathologist (SLP) ____Other (please specify) ________________________________ 2. What is the highest level of education/degree you have completed? ____Associate ____Bachelor ____Master ____Entry-level doctorate ____Post-professional doctorate ____Research doctorate (PhD, EdD, etc.) 3. Please describe how many years of experience you have as a practicing clinician in the discipline identified in question 1: ____ years REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 4. 57 Please describe how many years of experience you have as a practicing clinician within the SNF setting: ____ years 5. What is your current clinician manager role: ____ Area Director of Operations ____ Market Program Director ____ Single-site Program Director ____ Rehab Clinical Leader ____ Other (please specify) 6. Please describe how many years of experience you have in a clinician manager role: ____ years 7. Please identify the geographic region in which you perform your clinician manager role: ____West (AK, AZ, CA, CO, HI, ID, MT, NM, NV, OR, UT, WA, WY) ____South/Central (AR, LA, NE, OK, MS, ND, SD, TX) ____ Midwest (IA, IL, IN, KY, MI, MN, MO, ND, OH, WI) ____Southeast (AL, FL, GA, NC, SC, TN, VA, WV) ____ Northeast (MD, DC, DE, PA, NJ, NY, MA, CT, RI, VT, NH, ME) REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 8. 58 Please identify your gender: ____male ____female ____prefer not to answer 9. In the past 5 years, approximately how many FORMAL hours of training have you received from your (current or previous) employer related to Medicare guidelines for documentation and/or reimbursement? ____ None ____ Less than 2 hours provided ____ 2 to 5 hours ____ 5-10 hours ____ 10 or more hours Comments: ______________________________________________________ 10. In the past 5 years, approximately how many FORMAL hours of training have you received from a non-employer source (e.g. conference, online course, etc.) related to Medicare guidelines for documentation and/or reimbursement? ____ None ____ Less than 2 hours provided ____ 2 to 5 hours ____ 5-10 hours ____ 10 or more hours REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 59 Comments: ______________________________________________________ 11. Please identify your preferred method of learning information related to your clinician manager role. Select all that apply: ____independent study outside of work ____continuing education course ____employee-sponsored presentation ____computer-based training ____professional organization conference ____other (please specify)__________________________________________ 12. Did your degree curriculum include any coursework on Medicare regulatory and/or documentation requirements? ____yes ____no ____ do not remember Comments: ______________________________________________________ Additional comments or information you would like to share: ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 60 Part 2 - Self-Assessment Part 2 refers to Medicare guidelines for documentation and reimbursement of rehabilitation services in the SNF setting. These are guidelines directly impacting provision of therapy services, such as: planning for and calculating Minimum Data Set (MDS) 3.0 Resource Utilization Groups (RUGs), requirements for specific documentation components (e.g. treatment notes, progress notes, co-treatments, etc), and regulatory requirements related to certifications, student supervision, and Part A versus Part B reimbursement. These regulations would be utilized daily as part of managing a rehab department in a SNF setting. Part 2 does NOT refer to billing methods, claims processing, or other tasks typically performed by the billing department. 1. How confident are you with your perceived level of personal knowledge regarding Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting? very confident confident 5 4 somewhat slightly not confident confident confident at all 3 2 1 REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 2. 61 What is your perceived level of personal knowledge regarding Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting compared to other clinician managers? 3. much higher higher about the same lower much lower 5 3 2 1 4 What is your perceived level of personal knowledge regarding Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting compared to other non-management/staff clinicians? 4. much higher higher about the same lower much lower 5 3 2 1 4 How satisfied are you with your previous training regarding Medicare documentation and reimbursement guidelines specific to rehabilitation services in the SNF setting? highly fairly satisfied satisfied 5 4 neutral 3 not very not at all satisfied satisfied 2 1 Additional comments or information you would like to share: ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 62 Part 3 - Medicare Knowledge Questions Related to SNF Therapy Services Part 3 tests your knowledge of Medicare guidelines for documentation and reimbursement of rehabilitation services in the SNF setting. These are guidelines directly impacting provision of therapy services, such as: planning for and calculating Minimum Data Set (MDS) 3.0 Resource Utilization Groups (RUGs), requirements for specific documentation components (e.g. treatment notes, progress notes, co-treatments, etc), and regulatory requirements related to certifications, student supervision, and Part A versus Part B reimbursement. These regulations would be utilized daily as part of managing a rehab department in a SNF setting. Part 3 questions should be answered without the use of any additional resources. If you are unsure of the answer to a particular question, you may choose the last answer choice (To be honest, Im really not sure). Medicare Part A Regulations: 1. To qualify for a skilled rehabilitation stay in a skilled nursing facility under Medicare Part A following an acute hospitalization for sepsis, patients must have been admitted to the hospital for a minimum of ___ consecutive midnights. 1. 0 2. 1 REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 63 c. 2 d. 3 e. There is no minimum. f. To be honest, Im really not sure. 2. Physicians certify therapy services under Medicare Part A skilled rehabilitation stays by: a. Completing the facility certification/recertification b. Completing individual certification of each individual therapy plan of care c. Physician certification of therapy services is not required under Medicare Part A d. None of the above e. To be honest, Im really not sure. 3. A patient is receiving therapy services as part of a Medicare Part A rehabilitation stay. Which of the following calculations of rehab RUG level would be most accurate? a. RV based on 5 days/265 minutes of occupational therapy and 4 days/242 minutes of physical therapy b. RU based on 4 days/300 minutes of occupational therapy, 4 days 300 minutes of physical therapy, and 3 days/180 minutes of speech therapy c. RH based on 3 days/95 minutes of occupational therapy and 5 days/200 minutes of speech therapy d. RM based on 4 days/140 minutes of speech therapy. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 64 e. None of the above f. To be honest, Im really not sure. 4. The 7-day lookback for skilled Medicare Part A stays reviews the number of days/minutes of therapy provided during those 7 days to see if what kind of MDS assessment might be required? a. Change of Therapy (COT) assessment b. End of Therapy (EOT) assessment c. Start of Therapy (SOT) assessment d. Any of the above might be required e. To be honest, Im really not sure. 5. A skilled Medicare Part A patient is currently being treated at the RU RUG level. If the patient receives 700 of the projected minutes during the 7-day lookback period, what happens to billing/reimbursement? a. Continue to bill the RU RUG and provide an extra 20 minutes the following week b. Complete an EOT assessment and discharge the patient; patient can be reevaluated after 3 days c. Complete a COT assessment and prior seven days will be billed at the next lower RUG (RV) d. Continue to bill the RU RUG; no additional minutes will be required the following week e. To be honest, Im really not sure. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 6. 65 According to Medicare Part A regulations, what is the level of supervision for a student providing treatment in a skilled nursing facility? a. Line of sight supervision b. Direct supervision as determined by the supervising therapist/assistant c. Off-site supervision, supervising clinician must be available by phone d. Students cannot independently provide and code treatment minutes under Medicare Part A e. To be honest, Im really not sure. Medicare Part B Regulations: 7. Therapy services billed under Medicare Part B require a physician (or nonphysician practitioner) signature to certify the plan of care (evaluation or recertification) within ____ days of plan of care completion. a. 10 b. 14 c. 30 d. 90 e. To be honest, Im really not sure. 8. The MAXIMUM timeframe a Medicare Part B therapy plan of care can be certified by the physician (before recertification would be required) is ____ days. a. 30 REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 66 b. 60 c. 90 d. There is no maximum. The plan of care duration can be as long as the evaluating OT/PT/SLP deems appropriate. e. To be honest, Im really not sure. 9. Therapy services for occupational therapy, physical therapy, and speech therapy billed under Medicare Part B require therapy providers to meet the 10th visit requirement for progress notes. Medicares 10th visit requirement includes: a. A written progress note by the physical therapist, occupational therapist or speech language pathologist b. Therapist co-signature on a progress note written by a therapy assistant to demonstrate supervision c. A minimum of 30 minutes of billable service on 1 day of treatment by the physical therapist, occupational therapist or speech language pathologist d. Physician certification for the next 10 days of treatment e. To be honest, Im really not sure. 10. Modifier-59 is added to Medicare Part B therapy service charges to denote a separate and distinct procedural service. Which of the following is a situation where the -59 modifier should be used? a. A clinician performed manual therapy (97140) and therapeutic exercise (97110) during the same 15 minute block of time. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 67 b. A speech language pathologist provided dysphagia treatment (92526) and speech treatment (92507) on the same day. c. Physical therapy performed gait training (97116) on the same day that occupational therapy provided orthotics fitting of a hand orthotic (97760). d. None of these would require the -59 modifier. e. To be honest, Im really not sure. 11. Medicare Part B therapy services provided in calendar year 2017 require the use of the KX modifier for charges above and beyond which therapy cap amounts? a. $1980 for PT; $1980 for OT; $1980 for ST b. $1980 for OT, PT, and ST combined c. $1980 for OT; $1980 for PT and ST combined d. $1980 for PT; $1980 for OT and ST combined e. To be honest, Im really not sure. 12. According to Medicare Part B regulations, what is the level of supervision for a student providing treatment in a skilled nursing facility? a. Line of sight supervision b. Direct supervision as determined by the supervising therapist/assistant c. Off-site supervision, supervising clinician must be available by phone d. Students cannot independently provide and code treatment minutes under Medicare Part B e. To be honest, Im really not sure. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 68 Medicare Regulations related to Therapy Provision and Documentation: 13. Medicare requires that occupational therapy, physical therapy, and speech therapy plans of care contain which of the following: a. Amount, frequency, and duration of treatment to be provided b. Results of standardized tests performed on evaluation c. Legible handwritten signature (or validated electronic signature) and professional identity of individual who established the plan d. Answers a and b e. Answers a and c f. Answers b and c g. To be honest, Im really not sure 14. Daily treatment notes required by Medicare MUST include which of the following: a. Date and time treatment was performed b. Identification of each specific intervention/modality provided and billed (both timed and untimed codes) c. Total treatment minutes for timed codes only d. Patients subjective comments and response to treatment e. To be honest, Im really not sure. 16. Which of the below represents a way to correctly code and bill a 60-minute therapy session using the 8-minute rule? REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 69 a. 60 minutes of dysphagia treatment (1 unit 92526) b. 20 minutes of therapeutic procedures (1 unit 97110), 20 minutes of therapeutic activities (1 unit of 97530), and 20 minutes of neuromuscular re-education (1 unit of 97112) c. 52 minutes of gait training (3 units of 97116) and 8 minutes of therapeutic activities (1 unit of 97530) d. Answers a and b e. Answers a and c f. Answers b and c g. To be honest, Im really not sure. 16. Group therapy provided by one therapy clinician for multiple patients requires which of the following: a. Patients are performing different activities but working on similar goals b. Groups must contain at least 4 and no more than 6 patients c. Minutes are divided by number of group participants and coded as group minutes on the MDS for skilled Medicare Part A patients d. A 45 minutes group therapy session would be coded as 3 units of group therapy (97150 or 92508) for each participating Medicare Part B patient e. To be honest, Im really not sure 17. Which of the following treatment scenarios would be considered concurrent therapy: REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 70 a. One clinician providing treatment to two patients at the same time; patients are performing same or similar activities b. A therapy student treating one patient and the supervising clinician treating another patient c. A clinician providing treatment to one patient while another patient receives treatment from a rehab aide d. Two clinicians providing therapy to a single patient during the same treatment session e. To be honest, Im really not sure 18. Co-treatment provided to a single patient requires which of the following: a. Documentation must support the medical complexity of the patient that necessitates two or more therapy clinicians during the same treatment session b. For skilled Medicare Part A patients, both clinicians may code and bill the treatment minutes in full c. For Medicare Part B patients, both clinicians may code and bill the co-treatment minutes in full d. For Medicare Part A patients, a clinician may bill for treatment minutes provided with a therapy aide as part of an established therapy treatment plan e. To be honest, Im really not sure. REHAB MANAGER KNOWLEDGE OF MEDICARE GUIDELINES 71 Appendix D Final Page of Survey Thank you for your willingness to participate in this study. Your responses will help provide new and important data regarding this critical piece of management expertise in the SNF setting. To be entered into the drawing for one of fifteen $25 gift cards, please send your name and gift card preference (Amazon or Visa) to my email at finnir@uindy.edu. This information will not be linked to your survey responses in any way. Winners will be notified by email on or before April 30th.  ...

... PHYSICAL THERAPY CLINICAL INSTRUCTOR SHORTAGE: WHY NOT BE A CLINICAL INSTRUCTOR? By Barbie Kimmel An Honors Project submitted to the University of Indianapolis Strain Honors College in partial fulfillment of the requirements for a Baccalaureate degree with distinction. Written under the direction of Tammy Simmons. August 22, 2016 Approved by: __________________________________________________________________ Tammy Simmons, Faculty Advisor __________________________________________________________________ Dr. James B. Williams, Interim Executive Director, Strain Honors College __________________________________________________________________ First Reader __________________________________________________________________ Second Reader B. Kimmel ii Abstract This study measured the extent of the effect that benefits and barriers have on physical therapy clinical instructors, examined relationships between demographics and benefits and barriers, and discovered additional benefits, barriers, and incentives. Participants included 168 physical therapy clinicians. They completed self-developed demographic, benefit, barrier, and incentive questionnaires that were received through email. According to the mean score on a Likert scale, external benefits and organizational barriers have the largest effect on clinicians. Independent t-tests and ANOVAs indicated that facility, degree, and years of experience before supervising students had a significant effect on at least one of the benefit or barrier categories. An inductive approach indicated that the most common theme for each qualitative question was the benefit of growing as a clinician, the barrier of schedules/caseloads, and the incentive of free/discounted education. Overall, many current benefits and barriers were supported by this study. Some of the top benefits were associated with the university. This could allow universities to continue/improve their benefits as incentives for clinicians. Many top barriers, however, are not able to be controlled by the clinician or the university. It may also be that universities need to address the benefits and barriers on an individual basis. B. Kimmel iii List of Tables Table 1: Number of Participants in Demographic Categories .................................8 Table 2: Correlations Between the Dependent Variables ......................................12 Table 3: Descriptive Statistics for Dependent Variables & Individual Items ........13 Table 4: DV Means & Std. Deviations According to Independent Variables .......15 B. Kimmel iv Table of Contents Cover Page ............................................................................................................... i Abstract .................................................................................................................. ii List of Tables ......................................................................................................... iii Statement of Purpose ...............................................................................................1 Introduction ..............................................................................................................2 Methods....................................................................................................................7 Results ..................................................................................................................11 Discussion/Conclusion ..........................................................................................22 Reflection ...............................................................................................................32 References ..............................................................................................................36 Appendices .............................................................................................................38 Appendix A: Informed Consent Document ...............................................38 Appendix B: Sample Survey......................................................................39 Appendix C: IRB Approval Letter .............................................................47 Appendix D: CITI Training Certificate .....................................................48 Appendix E: Recruitment Email ................................................................50 B. Kimmel 1 Statement of Purpose The primary purpose of this study was to fill existing gaps in physical therapy clinical education research involving clinical instructors. To do so, known benefits and barriers of becoming a clinical instructor were assessed based on the extent to which they affect clinicians. This research also filled existing gaps in research by utilizing quantitative research and clinical staff regardless of their previous clinical instructor experience. Secondary purposes of this study were to discover other perceived benefits and barriers as well as to learn what types of support or incentives would increase the likelihood of clinicians to become clinical instructors. A tertiary purpose of this study was to examine relationships between the benefits and barriers to gender, job title, level of education, amount of experience, number of students supervised, and practice area. B. Kimmel 2 Introduction Many healthcare related fields require clinical education as part of the curriculum; physical therapy is no exception. Clinical education allows for students to apply knowledge obtained in the classroom to real clinical situations with the help of a clinical instructor. A clinical instructor in physical therapy is a licensed physical therapist or physical therapist assistant who volunteers to supervise students in the setting where he/she is employed for a set number of weeks. Despite the importance of clinical education, it is apparent from personal experience and review of the literature that clinical placements are becoming more difficult to find (Davies, Hanna, & Cott, 2011; Mooney, Smythe, & Jones, 2008; Stern & Rone-Adams, 2006; Hanson 2011; Thomas, Dickson, Broadbridge, Hopper, Hawkins, Edwards, & McBryde, 2007). Because of this decline, it is important to evaluate reasons individuals are and are not accepting positions as clinical instructors. Review of current research regarding clinical education from the perspective of clinical instructors uncovered various benefits and barriers of being a clinical instructor. The benefits discovered can be organized into four categories including intrinsic benefits, professional growth and development, future profession benefits, and extrinsic benefits. The barriers of being a clinical instructor can be sorted into three major themes including personal, organizational, and demand barriers. Some benefits of supervising a student are largely concerning intrinsic values. These benefits can be thought of as very internal and personal benefits; they are mainly focused around emotions. The intrinsic benefits as perceived by clinical instructors B. Kimmel 3 include: personal satisfaction (Davies et al., 2011), pride in student growth (Davies et al., 2011; Hanson, 2011), enjoyment of teaching (Davies et al., 2011), increased recognition (Davies et al., 2011; Greenwood, Ha, Harris, Knabe, & Bahner, 2009), increased interest in work (Greenwood et al., 2009), feeling like an expert (Greenwood et al., 2009), and sensing appreciation from students (Greenwood et al., 2009). Other benefits seem to aid with professional growth and development. These benefits come from various sources of inspiration that a student brings into the clinic. The clinical instructor takes advantage of what the student brings in and applies it to himself/herself, which leads to an advancement in professional performance. The professional growth benefits identified by clinical instructors include: encouragement of reflective practice (Davies et al., 2011; Hanson, 2011; Thomas et al., 2007; Greenwood et al., 2009), introduction to current knowledge/new ideas (Davies et al., 2011; Hanson, 2011; Thomas et al., 2007; Greenwood et al., 2009), facilitation of evidence-based practice (Davies et al., 2011; Hanson, 2011; Thomas et al., 2007), increased energy/excitement (Davies et al., 2011; Hanson, 2011; Thomas et al., 2007), increased confidence (Davies et al., 2011), improved patient care (Davies et al., 2011; Greenwood et al., 2009), improvement in overall clinical skill (Hanson, 2011; Thomas et al., 2007; Greenwood et al., 2009), increased team development (Thomas et al., 2007), and greater connections with universities (Hanson, 2011; Thomas et al., 2007; Greenwood et al., 2009). Another benefit category involves the promotion of ones profession by helping to mold the young professionals who will sustain the profession in the future. The future B. Kimmel 4 profession benefits of being a clinical instructor include contributing/giving back to the profession (Davies et al., 2011; Hanson, 2011; Thomas et al., 2007), being involved in the curriculum/part of the academic community (Davies et al., 2011), educating the next generation (Davies et al., 2011; Hanson, 2011; Thomas et al., 2007), and ensuring the competence of future clinicians (Greenwood et al., 2009). The last set of benefits is based strongly on external incentives. These are more tangible benefits one receives for supervising a student, which are traditionally thought of as rewards. Clinical instructors suggested that some external benefits include promotion of the clinic (Thomas et al., 2007), access to continuing education (Davies et al., 2011; Hanson, 2011; Greenwood et al., 2009), access to university libraries (Hanson, 2011), recruitment potential (Davies et al., 2011; Hanson, 2011; Thomas et al., 2007), and fulfilling organizational goals and objectives (Thomas et al., 2007). The first category of barriers incorporates personal reasoning. This category of barriers is very intrinsic in nature. Some of the personal barriers identified by clinical instructors are increased stress (Davies et al., 2011; Hanson, 2011; Greenwood et al., 2009), change in routine (Davies et al., 2011), lack of knowledge about the student (Davies et al., 2011; Hanson, 2011; Thomas et al., 2007), fear of a difficult student (Davies et al., 2011), professional burnout (Davies et al., 2011), decreased autonomy and flexibility (Davies et al., 2011; Hanson, 2011; Anderson, Cosgrove, Lees, Gigi, Gibson, Hall, & Mori, 2014), lack of recognition (Davies et al., 2011), feeling unvalued by students (Davies et al., 2011), increased commitment (Hanson, 2011), demoralized psyche (Mooney et al., 2008), fear of discrepancy in expectations (Hanson, 2011), B. Kimmel 5 unwanted increase in work (Hanson, 2011), fear of conflicting learning styles (Davies et al., 2011; Thomas et al., 2007), fear of personal incompetence (Thomas et al., 2007), and difficulties with the Clinical Performance Instrument (Anderson et al., 2014). Another category of barriers involves the organization for which one works. These barriers are less controllable and are often the result of ones work environment. The organizational barriers identified include: space constraints (Davies et al., 2011; Thomas et al., 2007), lack of organizational support (Davies et al., 2011; Hanson, 2011), busy or variable caseloads (Davies et al., 2011; Hanson, 2011; Thomas et al., 2007), poor reimbursement (Stern & Rone-Adams, 2006; Hanson, 2011; Greenwood et al., 2009), staffing issues or shortages (Stern & Rone-Adams, 2006; Hanson, 2011; Thomas et al., 2007), lack of physical resources (Hanson, 2011; Thomas et al., 2007), lack of learning experiences available at the facility (Hanson, 2011), safety concerns (Hanson, 2011), parttime or unsteady schedules (Hanson, 2011), date of rotations (Thomas et al., 2007), excessive traveling (Hanson, 2011), single therapist facilities (Thomas et al., 2007), and new businesses (Thomas et al., 2007). The last type of barriers involves healthcare and facility demands. These barriers are the most uncontrollable and are often due to strict federal, state, or facility requirements and demands. Some demand barriers according to clinical instructors are productivity standards (Davies et al., 2011; Stern & Rone-Adams, 2006; Hanson, 2011; Thomas et al., 2007), time constraints (Davies et al., 2011; Stern & Rone-Adams, 2006; Hanson, 2011; Anderson et al., 2014), increased documentation requirements (Hanson, 2011), the impact of healthcare reforms (Mooney et al., 2008; Hanson, 2011; Thomas et B. Kimmel 6 al., 2007), changing professional requirements (Mooney et al., 2008; Hanson, 2011; Thomas et al., 2007), and decreased insurance funding and reimbursement (Stern & Rone-Adams, 2006; Thomas et al., 2007). Within current research, clinical instructors have also mentioned various supports and incentives that would decrease the burden of having a student and, likewise, increase their willingness to take a student. The research regarding this question can be categorized into three inclusive themes. The first theme pertains to training and support; the clinical instructors want more tips for supporting and dealing with students (Hanson, 2011). They also mentioned that more opportunities for structured clinical instructor training would be beneficial (Hanson, 2011). A second major theme explains the need for more information about the school and the student (Hanson, 2011). Clinical instructors suggested more defined expectations/objectives for the clinical, a breakdown of the curriculum, frequent contact with the institution, access to student profiles, and information about student learning preferences would be helpful in tailoring clinical education experiences to specific institutions and students (Hanson, 2011). The last major theme involving the incentives for taking a student was not as prominent in the research; however, some of these external incentives included university library access (Hanson, 2011), discounts at the university bookstore (Greenwood et al., 2009), and access/discounts for continuing education courses (Davies et al., 2011; Hanson, 2011; Greenwood et al., 2009). Much of the research on the subject of benefits and barriers regarding clinical education from the clinical instructors perspective is qualitative. There are many B. Kimmel 7 different benefits and barriers now known, but it is not as obvious to what extent these affect clinicians decisions to become clinical instructors. Many studies also focused on past and present clinical instructors for their data collection; there does not seem to be much data involving clinical staff members who have not been clinical instructors. No existing research was found on the relationship of demographic information to the benefits and barriers of being a clinical instructor. There is also a lack of research on the topic of support or incentives that would increase the willingness of clinicians to become clinical instructors. This research will focus on four research questions: 1) To what extent do the known benefits and barriers of becoming a clinical instructor affect clinicians in the physical therapy profession?, 2) Are there any relationships between demographic information and the benefits and barriers of being a clinical instructor?, 3) Are there other benefits or barriers that have been missed by other researchers?, and 4) What type of support or incentive would increase the likelihood of clinicians to become clinical instructors. Method Participants One hundred seventy four physical therapy clinicians in contract with the University of Indianapolis started the survey. Six participants completed less than one percent of the survey and were not included in data analyses. Number of participants within demographic categories are presented in Table 1. B. Kimmel 8 Table 1 Number of Participants in Demographic Categories n Gender Job Title Degree Facility Years of Experience Clinical Instructor Number of Students Experience Before Students Male 32 Female 136 Physical Therapist 136 Physical Therapist Assistant 32 Associate's 16 Bachelor's 40 Master's 45 Doctorate 66 Other 22 Inpatient 39 Outpatient 84 Rehabilitation Hospital 23 <1-10 Years 73 >10 Years 95 Yes 155 No 13 >5 Students 108 0-5 Students 47 Not Applicable 13 0-1 Years 63 2-3 Years 56 >3 Years 36 Not Applicable 13 Measures The questionnaires used for this study were self-developed administered through the survey-building site Qualtrics. The survey included a consent document and the questionnaires described below. The Institutional Review Board (IRB) approved consent document is included in Appendix A. Demographic Questionnaire. The Demographic Questionnaire included questions asking participants to select their gender, job title, years of experience, and B. Kimmel 9 practice area. Participants were also asked to report if they had been a clinical instructor. Previous clinical instructors were then asked to report how many students they had supervised and how many years of experience they had before supervising their first student. Benefits Questionnaire. The Benefits Questionnaire included 26 benefits of being a clinical instructor discussed in the literature. Participants were asked to rate the extent to which each benefit applied or would apply to them as a clinical instructor. The questionnaire utilized a Likert scale from 1 (none at all) to 5 (a great deal). Some of the benefits included in survey were personal satisfaction, introduction to current practice, educating the next generation, and continuing education. The benefit items were categorized into four subscales for further analysis. The intrinsic benefits subscale included 7 items ( = .85), personal growth and development benefits included 9 items ( = .93), future profession benefits included 5 items ( = .86), and external benefits included 5 items ( = .81). In addition to the Likert scale items, participants were asked to list any benefit not mentioned in the questions above. Barriers Questionnaire. The Barriers Questionnaire included 33 barriers of being a clinical instructor discussed in the literature. Participants followed the same procedure for this questionnaire as they did for the Benefits Questionnaire. Some of the barriers included in survey were increased work, feeling undervalued, lack of resources, and high productivity standards. The barriers were categorized into three subscales for further analysis. The personal barriers subscale included 16 items ( = .93), organizational barriers included 13 items ( = .88), and demand barriers included 6 B. Kimmel 10 items ( = .88). In addition to the Likert scale items, participants were asked to list any barrier not mentioned in the previous section. Incentive Questionnaire. The Incentive Questionnaire consisted of one qualitative question. This questionnaire asked participants to list any incentives or support that would increase their willingness to become a clinical instructor. A sample of the full survey is included in Appendix B. Procedure The study was approved under an exempt status from the Institutional Review Board (IRB). The IRB approval letter is located in Appendix C. Researchers also completed protection of human subjects training through the Collaborative Institutional Training Initiative (CITI) Program. Proof of CITI training is located in Appendix D. Participants were recruited through an email that provided them with the purpose of the research, the link to the survey, and instructions for completion. The email was sent to the Center Coordinators of Clinical Education (CCCE) of all the clinics/hospitals that have a contract with the physical therapy school at the University of Indianapolis. The email encouraged the CCCEs to complete the survey and forward the survey on to all of their clinical staff, regardless of previous clinical instructor experience. The content of the email is included in Appendix E. Data Analyses Plan. The data obtained from the questionnaires were exported to Statistical Package for the Social Sciences (SPSS) for data analyses. First, descriptive statistics including, the means, standard deviations, and Pearson correlations were run. Second, independent t-tests and ANOVAs were performed to examine the mean B. Kimmel 11 differences on the benefits and barriers among the demographic variables. Specifically, independent t-tests were run for gender, job title, years of experience (0-10 years or >10 years), participation as a clinical instructor, and number of students supervised (0-5 students or >5 students). Responses for years of experience and number of students supervised were categorized into two groups in order to perform ANOVAs were run for degree, facility, and years of experience before supervising a student. Finally, the qualitative data obtained from the questionnaires were analyzed using an inductive approach to create common categories. Results Preliminary Analyses First, the data were analyzed to ensure the assumptions for the independent t-tests and ANOVAs were met. Through visual inspection of the box plots, one to six outliers were identified for the dependent variables. These outliers were replaced with the next highest/lowest value that was not an outlier. Correlations for the dependent variables are presented in Table 2. Number of participants, means, and standard deviations for the dependent variables and individual Likert scale questionnaire items are presented in Table 3. Normality assumption was assessed through skewness and kurtosis. Assumption was met with z < 2.58 for intrinsic benefits, professional growth and development benefits, and extrinsic benefits. After performing log transformation for variables with z > 2.58, the normality assumption was met. B. Kimmel 12 Table 2 Correlations Between the Dependent Variables Intrinsic Benefits Intrinsic Benefits Personal Growth and Development Benefits Personal Growth & Development Benefits Future Profession Benefits External Benefits Personal Barriers Organizational Barriers Demand Barriers .718** .678** .560** -.214* -0.047 -0.068 .726** .563** -.195* -0.014 -0.063 .579** -.225** -0.101 -0.129 0.004 0.131 0.091 .672** .686** Future Profession Benefits External Benefits Personal Barriers Organizational Barriers * Correlation is significant at the .05 level. ** Correlation is significant at the <.01 level. Homogeneity of variance assumption was met except for organizational barriers on degree, F(3, 136) = 2.78, p = .04, personal barriers in facility, F(3, 130) = 3.90, p = .01, future profession benefits in job title, F(143) = 5.78, p = .02, professional growth and development benefits in number of students supervised, F(142) = 5.59, p = .02, and professional growth and development benefits in years of experience, F(142) = 5.33, p = 0.2. The homogeneity of variance assumption for these variables was met by using t-test values where equal variance was not assumed or by correcting for sample size. .709** B. Kimmel 13 Table 3 Descriptive Statistics for Dependent Variables and Individual Items n Intrinsic Benefits Personal Satisfaction Student Growth Enjoy Teaching Increased Recognition Increased Interest in Work Feeling Like an Expert Appreciation Personal Growth and Development Benefits Reflective Practice Introduced to Current Practice Facilitation of Evidence Based Practice Increased Energy/Excitement Increased Confidence Improved Patient Care Improved Clinical Skills Team Development Connection to University Future Profession Benefits Giving Back Involvement in Curriculum Be Part of the Academic Community Educate the Next Generation Ensure Future Competence External Benefits Promote Workplace Continuing Education Access to University Library Recruitment Fulfill Organization Requirements Personal Barriers Increased Stress Change in Routine Not Knowing the Student Fear of Difficult Student Professional Burnout Decreased Flexibility Lack of Recognition Undervalued Increased Commitment Demoralized Psyche Fear of Different Expectations Increased Work Fear of Differing Learning Styles Fear of Feeling Incompetent Difficult CPI Not Asked to be a CI 145 147 149 149 148 149 149 148 144 146 148 149 148 148 149 149 149 148 145 148 148 148 147 149 145 148 149 148 147 148 134 144 144 143 144 144 144 143 143 144 144 144 144 144 144 143 138 Mean 2.33 1.86 1.59 1.64 3.34 2.61 3.00 2.26 2.33 2.05 1.89 2.06 2.30 2.46 2.44 2.31 2.54 2.93 2.32 1.88 3.27 2.98 1.87 1.63 2.92 2.41 2.84 3.78 2.78 2.81 3.95 3.14 3.32 3.97 3.41 3.87 3.52 4.34 4.21 3.63 4.67 4.30 3.60 4.10 4.28 3.96 4.93 Std. Deviation 0.76 0.90 0.69 0.84 1.24 1.23 1.28 1.03 0.88 0.98 0.91 0.99 1.09 1.19 1.19 1.13 1.18 1.23 0.79 0.93 1.18 1.19 0.88 0.80 0.90 1.14 1.27 1.25 1.17 1.14 0.68 1.12 1.14 1.03 1.18 1.17 1.18 1.10 0.94 1.20 0.71 0.80 1.13 0.80 0.87 1.11 0.35 B. Kimmel 14 Organizational Barrier Space Limits Lack of Organizational Support Caseloads Lack of Reimburse Staffing Issues Lack of Resources Lack of Educational Experiences Safety Concerns Schedules Date of Clinical Rotation Excess Traveling One Therapist Facility New Business Demand Barriers High Productivity Standards Time Constraints Documentation Requirements Healthcare Reforms Changing Professional Requirements Decreased Insurance Funding 141 144 144 144 144 144 144 143 143 144 144 144 144 143 144 144 144 144 144 144 144 4.40 3.94 4.36 3.40 4.40 3.99 4.40 4.68 4.52 4.26 4.18 4.82 4.94 4.92 3.92 3.67 3.35 3.51 4.24 4.26 4.43 0.53 1.15 1.02 1.29 1.05 1.19 0.95 0.70 0.76 1.15 1.09 0.67 0.40 0.43 0.84 1.26 1.27 1.25 1.02 0.94 0.82 Quantitative Analyses Independent t-tests revealed no statistical significant differences between genders, years of experiences, participation as a clinical instructor, and number of students supervised on the dependent variables (i.e., intrinsic benefits, future profession benefits, professional growth and development benefits, extrinsic benefits, personal barriers, organizational barriers, demand barriers). Dependent variable means and standard deviations according to independent variables are presented in Table 4. An independent t-test suggested that physical therapists (M = 2.36, SD = 0.82) rated future profession benefits higher than physical therapist assistants (M = 2.12, SD = 0.56) with marginal statistical significance, t(51.56) = 1.83, p = .07. Difference in facility on organizational barriers approached significance F(3, 137) = 2.27, p = .08. Post-hoc Least Significant Difference (LSD) results indicated that clinicians from other facilities (M = 0.24, SD = 0.16) rated organizational barriers B. Kimmel 15 significantly higher that clinicians in both outpatient facilities (M = 0.17, SD = 0.13) and rehabilitation hospitals (M = 0.15, SD = 0.10). There was no statistically significant difference between facilities on external benefits overall, F(3, 141) = 2.20, p = .09, but post-hoc LSD results indicated that participants from outpatient facilities (M = 3.11, SD =0.93) rated external benefits significantly higher than participants in inpatient facilities (M = 2.71, SD = 0.08). Individuals in outpatient facilities (M = 3.11, SD =0.93) also rated external benefits higher than those in rehabilitation hospitals (M = 2.69, SD = 0.81) with marginal significance. Table 4 Dependent Variable Means & Standard Deviations According to Independent Variables B. Kimmel 16 Difference in degree on personal barriers approached significance, F(3, 129) = 2.36, p = .07 with LSD results showing that therapists with bachelors (M = 0.30, SD = 0.13), masters (M = 0.29, SD = 0.15), and doctoral degrees (M = 0.31, SD = 0.13) rated personal barriers significantly higher than therapists with associates degrees (M = 0.19, SD = 0.13). Overall mean differences in demand barriers based on degrees were not statistically significant F(3, 139) = 1.66, p = .18. However, LSD post-hoc analysis revealed that participants with a bachelors degree (M = 0.31, SD = 0.17) rated demand barriers significantly higher than participants with an associates degree (M = 0.18, SD = 0.15). Participants with masters (M = 0.29, SD = 0.19) and doctoral degrees (M = 0.29, SD = 0.16) also rated demand barriers higher than participants with associates degrees (M = 0.18, SD = 0.15), but only with marginal significance. Differences in years of experience before having a student on future profession benefits approached significance, F(2, 142) = 2.39, p =.06. According to post-hoc analyses, clinicians with 2-3 years of experience before supervising a student (M = 2.50, SD = 0.78) rated future profession benefits significantly higher than clinicians with 0-1 year of experience (M = 2.15, SD = 0.74). Demand barrier mean differences based on years of experience before having a student were also significant, F(2, 141) = 4.39, p = .01. Specifically, LSD results showed that individuals with 2-3 years of experience (M = 0.34, SD = 0.18) rated demand barriers significantly higher than individuals with 0-1 year of experience (M = 0.26, SD = 0.17) or greater than 3 years of experience (M = 0.23, SD = 0.15). Differences in experience before having students on professional growth and development benefits was not statistically significant overall F(2, 141) = 2.25, p = .11; B. Kimmel 17 however, post-hoc analysis revealed that participants with 2-3 years of experience (M = 2.51, SD = 0.96) rated professional growth and development benefits significantly higher than participants with only 0-1 year of experience (M = 2.16, SD = 0.77). Qualitative Analysis Benefits. The first qualitative question asked participants to list any benefits that had not been mentioned in the Likert scale questions. A total of 16 participants answered this question; two of these participants had never been a clinical instructor. The most common theme that emerged was the benefit of growing as a clinician (6). Within this theme, one participant stated, Each presentation of a concept to a student deepens the instructor's comprehension and facilitates modification of the point of view over time. The second most common theme was that all the benefits were already included in the Likert scale questions (4). The next theme was giving back (3). One participants response demonstrating this theme was, I make time to be a CI so that I can be part of the process to educate new PT cliniciansI feel that is important to make a commitment to making sure that we move our profession forward. Another theme that emerged was better patient care (2). An example of this theme was, Student participation is generally well received by the patients which only enriches the experience for them. The next theme was the formation of new relationships (2). One participant example stated, [Another benefit is] the opportunity to meet enthusiastic, interesting, intelligent young people who have a goal in life. One of the themes mentioned the least was recruitment (1). This participant reported, It also is a great recruitment tool for us as we have a very thorough interview B. Kimmel 18 experience when we have a former student interested in an open position. The last theme that emerged from this question was the benefit of continued education (1). One participant stated, Another benefit of being a CI is fulfilling CEU just by being a CI. Barriers. The second qualitative question asked participants to list any barriers that had not been mentioned in the Likert scale questions. A total of 21 participants answered this question; all of these participants had been clinical instructors. The most common theme that emerged from this question was the barrier of schedules and caseloads (10). One participant example stated, [My] schedule is very flexible and ever changing which may not be conducive to student learning via repetition/practice. The second most common theme was lack of time to teach (5). A participant reported, I feel it is a lot to expect of someone with a full caseload of clients to be able to take the time to explain and be a good CI. I would enjoy being a CI much more if I had the time I felt I needed to explain and discuss things with students. Another theme was lack of support/understanding (5). This theme included a participant who stated, [The] primary barrier is employer productivity expectations with or without a student. Increased work was another theme that emerged from this question (4). One participant reported, Students can be a huge challenge. Schools do not always present an accurate representation of student's academic preparation which causes additional stress. A slightly less common theme to emerge was documentation (3). In one example, a participant stated, [Another barrier is] electronic medical records and the feeling that it would be faster if we did it ourselves rather than take the time to teach. Another theme was student assessments (3). One participant reported, [The] CPI is horrible...[it is] far B. Kimmel 19 too involved and redundant, especially for a PTA who is here for 5 weeks. A PT with a 34 month rotation, maybe. Takes too much time for people who have busy patient schedules. If I choose not to keep being a CI, this will be the reason. One theme that emerged was lack of comfort (3). This theme included a response in which a participant stated: I am always a little apprehensive with a new student, because they are learning things that are now 11 years more advanced than when I graduated with a Masters and it is fresh in their minds. I am a very good clinician, but as with all clinicians, some of the detailed specific book knowledge is lost over the years. I want the student to think I am competent. The first of the least common themes was the date of clinical rotations (2). One participant reported, Many schools have the same dates or very close to the same so we are limited at how many schools we can accommodate in that time period. Another theme was lack of compensation/appreciation (2). One participant stated, I would also enjoy [being a clinical instructor] more if I felt it was appreciated. The next theme that emerged was that clinicians have a life outside of work (2). In one example a participant reported that another barrier is the inability to stay later to accommodate for increased time it takes students to complete work secondary to picking children up from childcare or other schedule restraints. Having a management role was another theme that emerged from this question (2). One participant in this situation claimed, [The] number one reason I don't have more student is that I moved from full time patient care to management position[I] don't have a consistent patient care schedule now to have students. The least common theme to emerge was inadequately prepared students (1). B. Kimmel 20 This participant reported that schools frequently send students on first rotation who are ill-prepared for the challenge of this clinic which results in us having to move students around. Incentives. The final qualitative question asked participants to offer incentives that would increase willingness to be a clinical instructor. A total of 80 participants completed this question; of these participants, 5 had never been clinical instructors. The most common theme to emerge was the incentive of free or discounted education (27). One participant who demonstrated this theme stated, The current CEUs offered for being a CI are extremely valuable. Additional opportunities for discounted clinical education or free opportunities for clinical education for affiliating facilities would be nice. The second most common theme was monetary compensation (19). One participant suggested that another valuable incentive would be getting paid by the university to help defray the cost of student loans that most of us are still payingsome loan forgiveness would go a long way to motivate CIs. The third most common theme was that no incentives were needed (14). An example of this theme came from a participant who reported, I have always loved being a CI; I don't need any additional incentives. Another very common theme was decreased productivity standards or increased time to teach (13). This theme included responses such as the following in which a participant reported that another incentive would be decreased productivity requirements in order to have the time to actually teach the student[currently] I would likely have to stay much later in the beginning of the clinical in order to meet productivity standards to keep my own job. B. Kimmel 21 Increased connections to the university was another theme that emerged from this question (8). One participant stated that an additional incentive would be Increased perks from [the] university such as being made adjunct clinical faculty if frequently a CI[or] increased recognition from universities and facilities. The next theme included the formation of a new student assessment (7). An example came from one participant who reported that he or she would like to see the CPI change so [it is] not repetitive in [the] feedback given. [This would] help with the paper work load required to have a studentfeedback [is] important, just would like to see it changed or modified. Another theme suggested free or discounted educational tools and materials (6). One participant reported, There is one school that offers a gift certificate for a reference text book and my CIs always find that to be a pleasant surprise upon completion of the rotation. A less common theme was time off (3). One suggestion was that facilities need to provide additional time off for CI's because of the increase demand on a PT who also works as a CI. The next theme was having students interested in the clinical rotation (3). One participant suggested that students don't always want to come all the way to [my city] for a clinical. Another theme was to have different expectations during the clinical (3). One therapist mentioned that he or she would like to be able to [feel] good about sharing [a] student and having [the] student be [fully] aware that other therapists might have [the] student. Better prepared students was another theme that emerged (2). One participant stated that he or she was really starting to burn out as there have been a large number coming out unprepared from other Universities and taking on B. Kimmel 22 students has been increasing my work hours to in excess of 55 hours per week as a result. The first of the least common themes was the incentive of advancement in career (1). This participant reported that serving as a CI may qualify as element in career ladder and advanced proficiency advantage at my institution. The next theme was change in job position (1). This participant stated that he or she would gladly continue to be a CI if [he/she] changed roles. Another theme was recruitment (1). This participant suggested that an incentive would be to have potential future employees from students. The last theme to emerge involved changes in Medicare (1). This participant stated that an additional incentive would be allowing PT students to treat and still be reimbursed[because they] provide direct supervision at all times with [their] students including pre-planning, the session, and assistance in modification based on patient response so treating the patient is no different than no student presence. Discussion/Conclusion The purpose of this study was multifold. The first goal was to measure the extent to which the known benefits and barriers of being a clinical instructor affect physical therapy clinicians. The second goal was to examine the relationships between demographic information and the benefits and barriers. The third goal was to discover unknown benefits and barriers. The final goal was to learn what incentives would increase the likelihood of clinicians to become clinical instructors. B. Kimmel 23 Extent of Benefits and Barriers The results of this study indicated that physical therapy clinicians rated external benefits as having a moderate effect, which was the highest among all the benefit categories. External benefits included promotion of workplace, continuing education, access to the university library, recruitment, and fulfillment of organizational requirements. External benefits were followed by intrinsic benefits, personal growth and development benefits, and future profession benefits with all having only a small effect on clinicians. These results were inconsistent with qualitative research done by Davies et al. (2011) that suggested most benefits of being a clinical instructor are intrinsic; however, the results of the current study were consistent with quantitative occupational therapy clinical education research done by Thomas et al. (2007). In their study, Thomas et al. asked occupational therapists filling a similar role to clinical instructors in physical therapy to rate benefits on a Likert scale. Three of the top benefits for occupational therapists (recruitment, promotion of clinic/hospital, meeting organizational goals) were also included in the highest rated benefit category for physical therapy clinicians. The extrinsic benefits category in the current study, however, were rated as only a moderate effect, whereas the three benefits had a moderate to very large effect on occupational therapy clinicians. The five highest rated individual benefits were access to the university library, increased recognition, involvement in curriculum, feeling like an expert, and being part of the academic community. All five were rated as having a moderate effect on clinicians. Three of the top rated benefits are related to the university. The idea that B. Kimmel 24 connections to the university may be one of the most useful benefits to clinical instructors is supported by Hanson (2011) who suggests that communication and exchange between the university and clinicians is key to increasing the satisfaction related to clinical education. It is possible that benefits provided by and connections with universities are some of the most valuable benefits offered to clinical instructors and can be utilized to help with the shortage of clinical instructors. Physical therapy clinicians rated organizational barriers the highest compared to the other barrier categories. Organizational barriers included space limits, lack of organizational support, caseloads, lack of reimbursement, staffing issues, lack of resources, lack of educational experiences, safety concerns, schedules, date of clinical rotations, excess traveling, single-therapist facility, and new business. Clinicians rated these barriers as having a large effect according to the Likert scale. These results are consistent with quantitative occupational therapy clinical education research done by Thomas et al. (2007). Three of the top barriers for occupational therapists (lack of space, workload/caseload, decreased reimbursement) were also included in the highest rated barrier category for physical therapy clinicians and were rated as having a large effect on clinicians. The five highest individual barriers were single-therapist facility, not asked to be a clinical instructor, new business, excess traveling, and lack of educational experiences. The first four were rated as having a very large effect, with the fifth having a slightly lesser effect. It should be noted that the five highest rated barriers when it comes to being a clinical instructor are mainly out of the clinicians control. This idea is largely in B. Kimmel 25 agreement with Davies (2011) who reported that most prominent barrier is increased stress caused by external barriers that cannot be controlled by the clinician. This may suggest that universities are not able to assist in lessening the effects of the most bothersome barriers involved in becoming a clinical instructor. Demographic Relationships Many relationships between demographic information and the benefits and barriers of being a clinical instructor were not significant. These demographics include gender, years of experience, participation as a clinical instructor, and number of students supervised. This indicates that clinicians differing in these ways feel the effects of the benefits and barriers of being a clinical instructor in a similar way. Other relationships suggested that there might be a significant difference in the effects of benefits and barriers based on demographics. One of these relationships is that physical therapists may feel like they are helping their future profession more than physical therapist assistants. This may be because a physical therapist assistant only supervises physical therapist assistant students, who cannot practice the profession without a physical therapist. Without future physical therapists, the profession cannot continue, whereas the profession could survive without physical therapist assistants. Outpatient therapists might be more motivated by extrinsic benefits than therapists in rehabilitation hospitals. Therapists in rehabilitation hospitals may have greater access to resources such as continuing education courses or journal access through their institution than therapists in outpatient facilities; this would make the extrinsic benefits less valuable to the therapists in rehabilitation hospitals. Clinicians with masters and doctoral degrees B. Kimmel 26 may feel the pressures of the demand barriers more than clinicians with associates degrees. The difference in these degrees often indicate the difference between physical therapists and physical therapist assistants as well. Based on that information, the increased pressure felt by the clinicians with masters and doctoral degrees may be due to the increased responsibilities of a physical therapist as compared to a physical therapist assistant. There were also some relationships that were significant. According to the results of this study, clinicians in facilities categorized as other (inpatient and outpatient combined, schools, the other option) experience the pressures of organizational barriers more than clinicians in outpatient facilities and rehabilitation hospitals. Facilities within the other category would likely cause clinicians to have more variable schedules and caseloads than clinicians in outpatient facilities and rehabilitation hospitals. Clinicians in outpatient facilities enjoy extrinsic benefits more than clinicians in inpatient facilities; outpatient facilities may need to promote their workplace more than inpatient facilities or inpatient facilities may have greater access to continuing education courses through their workplace. Individuals with higher degrees reported feeling higher effects in regard to personal barriers than individuals with associates degrees. Individuals with higher degrees are likely physical therapists and may be supervising physical therapist students instead of physical therapist assistant students; the increased responsibilities of being a physical therapist and longer clinical rotations could increase the stress felt by the clinical instructor. Clinicians with 2-3 years of experience before supervising a student experience future profession benefits, professional growth and development benefits, and B. Kimmel 27 demand barriers more than clinicians with 0-1 year of experience. Clinicians with 2-3 years of experience may have waited until they felt they had a foundation of clinical skills before accepting a student. If this is the case, these individuals may be more likely to accept different perspectives that allow them to grow as a clinician, whereas a more recent graduate may feel threatened by different perspectives. More experience may also allow the individual to see the importance of continuing to build the future of the profession. Being involved in the profession for a longer amount of time may allow for clinicians to become more understanding of the strict requirements, which could lead them to feel the increased pressure of the demand barriers. Clinicians with 2-3 years of experience before having a student also rated demand barriers higher than those who had greater than three years of experience. Individuals with greater than three years of experience may have been able to comply with the strict requirements more often than individuals with 2-3 years of experience and therefore did not feel as much pressure. Greenwood et al. (2009) suggested that future research should examine relationships between demographics and the benefits and barriers of being a clinical instructor; their suggestion was adopted as a part of this study. There were only a few statistically significant differences in the various benefits and barriers based on the demographic information; however, interpretation of the data still suggests that there are significant differences in the extent to which benefits and barriers affect different groups of clinicians. Therefore, the benefits and barriers of being a clinical instructor may need to be addressed differently depending on the specific clinician. Maybe clinicians would B. Kimmel 28 be more likely to become clinical instructors if the benefits and barriers could be addressed on a person-by-person basis. Discovering Benefits, Barriers, and Incentives Many of the themes that emerged from the first question asking for additional benefits were already included in the Likert scale questionnaire. These themes included growing as a clinician, giving back/contributing to the profession, better patient care, recruitment, and continuing education. The formation of new relationships was the only additional benefit of being a clinical instructor that emerged; this was also the only additional benefit that had not been listed in previous research. For the most part, the findings of this study are supported by the research of Davies et al. (2011) that found reflective practice, better patient care, and preparing the next generation as key benefits to physical therapy clinical instructors; however, the overall theme found in their research was love of teaching. This benefit of being a clinical instructor was not mentioned in any of the participant responses in this study. Many of the themes that emerged from the second question asking for additional barriers were also already included in the Likert scale questionnaire. These themes included schedules/caseloads, lack of time, lack of support, increased work, documentation, student assessments, lack of comfort, date of clinical rotation, decreased appreciation, and difficult student. Life outside of work and a management role were two additional barriers to becoming a clinical instructor and the only two additional barriers not mentioned in prior research. Time, caseloads, and student performance are three of the most common barriers seen in previous research (Davies et al., 2011; Hanson, 2011; B. Kimmel 29 Thomas et al., 2007). Caseloads and time were the two most common themes in the current study, but student performance was one of the least common. This could indicate that students are more prepared for their clinical rotations now than the students were in 2007, or that barriers other than student performance have become of greater concern. The last question discussing incentives to become a clinical instructor contained many themes that were included in the Likert scale questionnaire as well. Free/discounted education, and connection with the university are two themes that were already included as benefits. This suggests that these are incentives that the universities should continue to provide and/or need to be even better than they are currently. Decreased productivity standards/increased time to teach, and a new student assessment are two themes already mentioned in the barriers. Neither of these are things that universities can change, but it may be something the profession as a whole will need to look at if finding clinical instructors becomes even more difficult. Monetary reimbursement was also mentioned, but is likely not an option for universities. One theme that universities may be able to address is free or discounted educational tools and materials. If universities could find a way to offer these incentives, it could result in an increase of clinical instructors. Strengths and Limitations This study featured many strengths. The first strength of this study was the use of multiple types of questions that complemented each other. This study was one of the first to focus mainly on quantitative data, which allowed clinicians to answer the extent to which they were affected by the benefits and barriers of being a clinical instructor. B. Kimmel 30 However, it also included qualitative questions in order for participants to comment on missing benefits or barriers. This study also included demographic questions which were used to examine differences in the effect of benefits and barriers according to demographics. Unlike previous studies, this study also included clinicians who had not been clinical instructors in at least some of the analyses. There were also several limitations to this study. First, some of the dependent variables are highly correlated, suggesting that these variables could be measuring very similar concepts. Another limitation is that answers from clinicians without previous clinical instructor experience were excluded from the mean difference analyses, except for the analysis that specifically looked at mean differences between clinicians who had been clinical instructors and clinicians who had not. This exclusion was due to different wording of questions for these individuals as well as the small number of these individuals who completed the survey. The difference in number of participants between previous clinical instructors and individuals who had not been clinical instructors also may have influenced the results of the comparisons between these two groups. Furthermore, the lack of incentive to complete all questions lead to missing data and an unequal number of participants for each question. The survey was also long with over 60 questions, which also played a part in the missed data. Self-report utilized by this study may also decrease its reliability. A final limitation is that the survey was only available to physical therapy clinicians in contract with the University of Indianapolis, which means that the results cannot be generalized to all clinicians. B. Kimmel 31 Conclusion Many of the benefits and barriers in past qualitative studies gained additional support from this study. This research also provided additional benefits and barriers of clinical education including the benefit of relationships, the barrier of life outside of work, and the barrier of a management position. Some of the top benefits, as determined by the current study, were associated with the university. This knowledge could allow universities to continue providing and/or improve their benefits as further incentive for clinicians to become or continue being clinical instructors. Many of the top barriers from this study cannot be controlled by the clinician or the university. This likely means that universities cannot decrease the burdens of being a clinical instructor, and will need to increase the benefits instead. Based on the demographic relationships with the benefits and barriers of being a clinical instructor, it may also be that universities need to address the benefits and barriers on an individual basis. Further research should focus on determining how universities can increase the effects of the most appreciated benefits and decrease the effects of the most troublesome barriers, while keeping in mind that demographics may influence those effects. With all future research, the goal should be to gain information that will help universities increase physical therapy clinician participation in clinical education. B. Kimmel 32 Reflection Completing an honors project is not nearly as easy as it sounds. I started off interviewing staff members to help me brainstorm ideas; I had many great ideas for projects, however, finding a realistic topic that was honors-worthy was much more difficult. After sitting down with my former physical therapy assistant professor, Tammy Simmons, I finally decided on a topic that peaked both of our interests. I had difficulties finding clinical rotations as a student and Tammy had difficulties as the clinical education coordinator. I decided that I wanted to know why physical therapy clinicians did not want to be clinical instructors. After struggling to find a topic, I thought the hard part was over. Little did I know that it had just begun. I had done a lot of research for papers before, but nothing had been as difficult as it was to find research on physical therapy clinical instructors. I was sure I was going to have to find a different topic. After asking several others for advice, I finally realized that good research can also pull from other professions in health care. Once I found the information, I had to filter it down into something manageable that I could put into a survey. Once again, I thought the hard part was done. When it came to writing the survey, I realized I had no idea how I was going to politely ask people why being a clinical instructor was so bad. After plugging different types of questions into Qualtrics, I decided that the best way would be to give the participants a list of what was good and what was bad about being a clinical instructor and to have them rate how good or bad they were. Wording the questions was another B. Kimmel 33 struggle that I was not anticipating. I had to have Tammy look over the survey several times in order to get the correct wording. After I had everything ready, it was time to write the proposal. I had written papers before, but the proposal was completely different. It was difficult to pull all of the pieces of the project together into a document and have it make sense to others. Eventually, I was successful. As any honors student would have, I thought my proposal was perfect. It was somewhat hard to swallow when I found out that I received a revise and resubmit from the honors committee. I sat frustrated trying to figure out how I was supposed to revise what I thought was fine the way it was. It was then that I realized that I could not do this on my own. I went to the writing center and it was one of the best decisions I made regarding this project. The feedback was incredibly helpful and it was encouraging to shift my point of view and realize the changes that could make my proposal even better. Through this part of the project I realized that everybody needs help sometimes and being stuck just means that you need to change your perspective. I also learned that nothing is ever perfect. Going through the IRB process was not nearly as painful as everyone made it sound. I met with the Human Protections Administrator before starting my application. He was very particular about the details when we were discussing my study, so I knew to be very detailed in my application. Although it took a while for my application to be reviewed, it was accepted the first time with very minor changes. Actually collecting data took very little effort. The survey was sent out to all the CCCEs and they sent them to their clinical staff. Participants took the survey and B. Kimmel 34 Qualtrics recorded their responses. For once, it seemed like something about this project was easy. Once again, I had no idea how difficult it was about to get. I had 174 surveys recorded and was ready to start data analysis. I had basic knowledge of statistics from my introduction to statistics course that I took as a freshman. I thought I would be able to do the analyses on my own. Shortly after transferring the data into SPSS, I knew I was in trouble. Luckily I had discussed my project with Dr. Dobersek when initially deciding what types of analyses I was going to do with the data. I contacted her again and asked for help. I had no idea that I would not be done with SPSS until I had spent a total of at least 24 hours in her office. Something I thought would be so simple turned out to be incredibly difficult and time consuming. I had not realized what it truly meant to prepare the data. Preparing the data included making sure that the assumptions for the planned statistical tests were met. I thought the long and difficult part of data analysis was actually analyzing the data; I was wrong. Over eighty percent of the time with Dr. Dobersek was spent preparing the data. This was by far the most eye-opening experience of the entire project. This project has challenged me in ways that I never could have imagined. I was challenged to accept the fact that I cannot do everything on my own and that everything can be made better. I learned to form professional relationships and to rely on others as part of a team. Going into the project, I thought I had pretty good critical thinking skills but every problem and difficulty along the way challenged me to go one step further. One of the most important things this project has taught me is to never underestimate a challenge. Even after this project is packed away with all of my undergraduate B. Kimmel 35 achievements, the skills and lessons learned will continue with me and prepare me for lifes next big project. B. Kimmel 36 References Anderson, C., Cosgrove, M., Lees, D., Gigi, C., Gibson, B. E., Hall, M., & Mori, B. (2014). What clinical instructors want: Perspectives on a new assessment tool for students in the clinical environment. Physiotherapy Canada, 66(3), 322-328. doi:10.3138/ptc.2013-27 Davies, R., Hanna, E., & Cott, C. (2011). 'They put you on your toes': Physical therapists' perceived benefits from and barriers to supervising students in the clinical setting. Physiotherapy Canada, 63(2), 224-233. doi:10.3138/ptc.2010-07 Greenwood, D., Ha, H., Harris, D., Knabe, T., & Bahner, C. (2009). Physical therapist clinical instructor perceived benefits and reservations of the clinical instructor role. Proceedings of the 5th Annual GRASP Symposium, 106-107. Hanson, D. J. (2011). The perspectives of fieldwork educators regarding level II fieldwork students. Occupational Therapy in Health Care, 25(2/3), 164-177. doi:10.3109/07380577.2011.561420 Mooney, S., Smythe, L., & Jones, M. (2008). The tensions of the modern-day clinical educator in physiotherapy: A scholarly review through a critical theory lens...including commentary by Kidd M. New Zealand Journal of Physiotherapy, 36(2), 59-66. Stern, D., & Rone-Adams, S. (2006). An alternative model for first level clinical education experiences in physical therapy. Internet Journal of Allied Health Sciences & Practice, 4(3), 1-23. B. Kimmel 37 Thomas, Y., Dickson, D., Broadbridge, J., Hopper, L., Hawkins, R., Edwards, A., & McBryde, C. (2007). Benefits and challenges of supervising occupational therapy fieldwork students: supervisors' perspectives. Australian Occupational Therapy Journal, 54, S2-S12. B. Kimmel 38 Appendices Appendix A: Informed Consent Document B. Kimmel 39 Appendix B: Sample Survey B. Kimmel 40 B. Kimmel 41 B. Kimmel 42 B. Kimmel 43 B. Kimmel 44 B. Kimmel 45 B. Kimmel 46 B. Kimmel 47 Appendix C: IRB Approval Letter B. Kimmel 48 Appendix D: CITI Training Certificate B. Kimmel 49 B. Kimmel 50 Appendix E: Recruitment Email  ...

... PERCEPTIONS ON RACE AND GENDER AMONG URBAN FARMERS: ORAL HISTORIES IN AMERICAS HEARTLAND By Ahmed Z. Mitiche An Honors Project submitted to the University of Indianapolis Strain Honors College in partial fulfillment of the requirements for a Baccalaureate degree with distinction. Written under the direction of Dr. Amanda J. Miller. April 30, 2016 Approved by: __________________________________________________________________ Dr. Amanda J. Miller, Faculty Advisor ______________________________________________________________ Dr. James B. Williams, Interim Executive Director, Strain Honors College ______________________________________________________________________ First Reader ______________________________________________________________________ Second Reader Can a system where one social group has more power and privilege advance social justice as long as fresh produce is made available and gardeners are diverse? (Reynolds 2014) Urban farmers and those who work with them represent a wide variety of ideas, motivations, and goals within the urban agriculture movement. Their motivations for engaging this work, their perceptions on racial and gender dynamics within it, and their views on urban agriculture as a solution for solving social problems are of central importance. Understanding these perceptions is paramount to understanding how urban agriculture can play an effective and beneficial role in the betterment of those it serves. Urban agriculture is understood as a response to a predatory food system that harms workers, consumers health, and the environment as well as to food access issues (Allen 2013). It can be a form of empowerment for marginalized groups and a tool for developing cities and broken communities (Keiser 2011). Nonetheless, urban farming can also be problematic. Urban farms can be sites where racism and class inequalities are replicated (Guthman 2008). They can also be ones where outsider groups enter into marginalized communities and appropriate their resources and promote gentrifying practices (Poulsen and Spiker 2014). Finally, urban agriculture can create a well-intentioned environment where social ills like hunger and joblessness are disconnected from their racialized roots (Reynolds 2014). In order to better understand the state of urban agriculture from the perspective of urban agriculturalists themselves, I conducted six oral histories in the Indianapolis metropolitan area of individuals working in or with urban farms and gardens. As part of the oral histories, I asked 2 questions about the agriculturalists motivations, their perceptions on race and gender inequality, and how they believed urban farming could potentially help address inequality and injustice. In all, I found that while urban agriculturalists are interested in serving marginalized communities and addressing hunger, the underlying structures of injustice that are the roots of the inequality they seek to address appear to be less salient for them. LITERATURE REVIEW Much of the literature about urban agriculture emerged in support of the burgeoning urban farming movement (e.g. Colasanti, Hamms, and Litgens 2012; Surls, Feenstra, Golden, Galt, Hardesty, Napawan, and Wilen 2015). Scholars sought to endorse and promote urban agriculture as a means for developing better cities, addressing food insecurity, and empowering marginalized communities (Poulsen and Spiker 2014). Other trends shifted the focus to a more critical approach to urban farming with the goal of saving it from becoming a tool of a sometimes unjust status quo (Alkon, Hope, and Mares 2012). Previous literature also addressed different facets of urban agriculture, including motivations of farmers, racial and gender justice, and ways urban agriculture could solve issues of injustice (Colasanti et al. 2012). Motivations Urban agriculturalists are just as diverse in their motivations as they are in their backgrounds and interests and represent a spectrum that often overlaps with itself (Colasanti et al. 2012). Motivations ranged from personal desires to connect with food and the earth (Allen 2013) to socially motivated causes to bring about equality and justice (Poulsen and Spiker 2014). Specifically, agriculturalists understand their work as religion itself, a personal calling to 3 address spiritual connections to nature as well as social causes (Allen 2013). Others sought more pragmatic goals in their work. For those living in Detroits failing inner city, urban agriculture is seen as way to promote development, vibrancy, and economic opportunity (Colasanti et al. 2012). A common theme is the desire to simply increase access to healthy and nutritious food for marginalized communities (e.g. Allen 2013; Colasanti et al. 2012; Poulsen and Spiker 2014). Finally, urban agriculture is understood as a means for community building and a space for bringing families together, encouraging youth to develop skills and employment experience, and as a way to promote healthier lifestyles and eating patterns (Colasanti et al. 2012). Racial and Gender Justice Literature surrounding ideas of social justice in the context of agriculture abound, especially in regards to racial and gender justice (e.g. Alkon, Hope, and Mares 2012; Guthman 2008). Social scientists have clearly documented that the history of agriculture in the United States is one of racial exploitation and that the food system is profoundly broken (Allen 2013). For example, government subsidies favor 10 percent of the richest farmers (i.e. multi-national agro-corporations) and are used to perpetuate predatory agricultural processes that are detrimental to consumers health, to exploited minority workers, and to animals and the environment (Allen 2013). The movement which emerged in the 1960s to respond to this deeply problematic food system sought to create spaces in urban and peri-urban communities that offered people the chance to grow fresh, healthy and accessible produce (fruits and vegetables) for themselves and their communities (Keiser 2011). This new method of food production also offered farmers and 4 their communities many advantages that transcended economic and material benefits. For example, these farms were a place where disadvantaged black youth could come to find second chances, to find themselves, to connect to the earth, and to find peace in a hectic environment (Allen 2013:124). The vacant land in inner-cities that would otherwise have been a community eyesore was, in some cases, turned into sites for empowerment. Vacant land in Detroit, for example, was transformed into a space for reclaiming food production and distribution in the black community, for resisting racism in traditional supermarkets and stores, for youth development and empowerment, and for connecting the community to the sources of their food and the earth (Colasanti et al. 2012). The gender dynamic also transcended simple tangible benefits. For women of lowincome households it was a source of empowerment within, symbolizing security and safety, and encouraging community development and family ties (Slater 2001). In the context of the Global South, food gardening for women was used as a response to trauma from violence and powerlessness, where gardening became a form of resistance to societal oppression (Slater 2001). Urban farming also represented stability; it was symbolic of putting down permanent roots in the city which, especially for women who came from rural parts of the Global South, was associated with residence stability and the means for building a family (Slater 2001). Gender dynamics in urban farming were also a means to challenge existing gender norms. In the context of Londons government allotment plots, Buckingham (2005) found that women entering the allotment scene coincided with a shift in attitude among males that once dominated the plots and who gradually began to see women gardeners as competent and capable. 5 While initial research sought to advocate for urban farming and presented it in a largely positive light, others have drawn on Critical Race Theory and Critical Geography to offer critiques and highlight some of the negative aspects of urban farming (Guthman 2008; Tornaghi 2014). For some, the first wave of literature over-emphasized the benefits of urban agriculture its potential to address healthy food access, environmental issues, and build stronger communities- without addressing potential problems and unjust dynamics it could reproduce (Reynolds 2014). One such dynamic is the existence of racism and suspicion of white led initiatives in minority neighborhoods. For example in Detroit, publicly owned and vacant land abound, but white led urban agriculture initiatives are received with suspicion despite efforts to address racism directly (Colasanti et al. 2012). This suspicion is often not unfounded. Whitened cultural practice is often permeated by a subconscious white missionary zeal and desire to teach African American subjects proper eating habits (Guthman 2008). In other cases, white outsider projects outright exploit neighborhood resources and create the conditions necessary for gentrification (Poulsen and Spiker 2014). Those who are most well connected, with the most power and voice, are also the ones who have access to additional resources and money (Reynolds 2014). In New York, for example, a news story covering the citys up and coming urban farmers highlighted seven farmers, six of whom were white; this despite the fact that the majority of urban farmers in the city were black or Latino. This was a case where the news story reinforced white dominance of urban agriculture movements (Reynolds 2014). Finally, alternative food discourse often dismisses racism as an underlying cause of inequities, preferring a color-blind 6 approach that focuses on socio-economic status instead (Reynolds 2014). That is, food discourse has reduced structural inequalities to problems of class disparity without acknowledging their deep racial origins and manifestations. Another such dynamic that was left behind in the first wave of literature surrounding urban agriculture was that it sometimes addressed symptoms of social injustice but not its roots. Scholars spoke of the benefits of urban agriculture and connected it to social justice, but did not differentiate between alleviating symptoms of injustice (e.g. access to food) and dismantling underlying structures of injustice (Reynolds 2014). Privileged farmers, for example, use planning models that could never be accessible globally and among the worlds poorest, but rather only by a small privileged few (Tornaghi 2014). Some community level local efforts which genuinely seek to reduce ecological footprints tend to represent small-scale economic entrepreneurism using limited grants and charitable funds and as a means for an income as opposed to a radically alternative form of urban living (Tornaghi 2014:10). Finally, urban agriculture itself may reinforce inequities and perpetuate an unjust system (Reynolds 2014). Reynolds found that, despite diversity, increased interest in urban agriculture, and social justice issues, much of the racial and class-based inequalities that are found in broad social systems are being replicated within New Yorks urban agricultural scene (Reynolds 2014). In other scenarios, urban agriculture is being used as part of health preventative measures that form a prelude to public budget cuts, or to greenwash communities with the sole goal of revamping the real-estate market (Tornaghi 2014). Even the plants are not left out. Changes in who farms in urban areas has in some cases effected what gets grown, allowing for the 7 embourgeoisement- a kind of vegetable variant of gentrification- of produce that reflects the tastes and needs of an elite, female dominated class of urban farmers (Buckingham 2005). Urban Farming as Solution Urban farming is understood among agriculturalists as being a solution for various social ills and injustices (Allen 2013; Weber 2009). Like the motivations noted above, the social problems urban farming is seen to address, and in what ways, often reflects a wide range of perspectives. The two major contributions urban agriculture was seen to have, however, are in regards to improving the environment and offering an alternative to an otherwise predatory and socially unjust food system (Allen 2013; Colasanti et al. 2012). Urban farming is understood to be a potential solution for health and food access. It is a means for bringing healthy and nutritious food to communities that cannot otherwise access it (Allen 2013). It is also a means for curbing the need to transport food over very large distances, thereby reducing reliance on fossil fuels (Allen 2013). Not only that, but urban farming can potentially replace or at least supplement a food processes that, as in large-scale, corporatized, monoculture practices, leads to the depletion of topsoil thus rendering food less nutrient rich. Urban agriculture, in comparison, offers people food that is more nutrient dense and flavorful. Urban agriculture is also seen as an entry-point for challenging a dominant food system which is rooted in racial exploitation and big-money interests (Colasanti et al. 2012). It can lead to workforce development, city development, and the rejuvenation of communities in inner-cities (Colasanti et al. 2012). 8 Urban farmers are also diverse in their understanding of how urban farming can achieve these goals. A common theme was that before urban agriculturalists could create change in communities, they needed to develop trust among residents of those communities, what Will Allen has called staying power, or the tendency for agriculturalists to stay committed to a community long term as opposed to staying briefly and quickly losing interest (2013). While it is acknowledged that urban farming is not quite yet a sustainable enterprise (farms are often funded through grants and other programs), many agree that it has the potential to be (Allen 2013). This can be achieved by raising awareness about urban farms and their potential and thus increasing demand and legislative support (Dubbeling, Zeuw, and Veenhuizen 2010; Keiser 2011). Others have noted that in order for food justice to be a reality in the US, and for urban agriculture to play a role in that, an emphasis must be made on challenging and directly opposing the underlying neoliberal political economy and corporate food regimes that hurt disadvantaged people in inner cities (Alkon, Hope, and Mares 2012). They argue that by ignoring the underlying neoliberal framework, agriculturalists are potentially complicit - if not helping to promote - this framework by relieving the market-based economy of its responsibility to cater to those who are most in need (Alkon et al. 2012). The themes addressed in food justice literature can be used to this end by offering those working on food security and environmental issues a better understanding of root causes of hunger and access and can also help environmental activists more broadly incorporate notions of social justice in their work (Alkon et al. 2012). Finally, farmers can educate those in their communities about structural oppression by incorporating non-hierarchical leadership models and engaging in policy advocacy (Alkon et al. 9 2012). Others have called for new production and sales models. For example, the community supported agriculture (CSA) model, where consumers purchase shares of a farmers produce before the planting season, and then are given from the produce when it is harvested, was developed in the mid-1990s, but is often times not feasible for poor people (Allen 2013). In this study, I sought to address issues of social justice, race, and gender in urban agriculture. I did so by asking three primary research questions: 1. What motivates urban agriculturalists in their work? 2. What are their perceptions on racial and gender justice? and 3. In what ways can urban farming help address issues of injustice? In all, I argue that urban agriculturalists must develop a deeper understanding of the underlying structures that create the conditions of hunger and inequality that they seek to address. METHODS In the fall of 2015, the Marion County Purdue Extension asked for an assessment of the special needs of urban farmers in Indianapolis. The organizations goal was to better understand the motivations, interests, and backgrounds of Indianapolis area urban farmers so that the Purdue Extension could better serve their needs. Together, my advisor, a representative of the Purdue Extension, and I decided to conduct oral histories in order to capture their motivations and needs in the broadest sense. Personally, I chose to explore urban farmers feelings regarding racial and gender justice in the context of urban agriculture as one aspect of this project. Few studies currently explore perceptions among urban farmers on race and gender together. With the Black Lives Matter movement developing into a national discourse on structural racism and the recent closure of a local food chain in Indianapolis (Double 8 Foods) 10 that has left more food deserts in low-income, mostly minority neighborhoods, a qualitative study on perceptions among some of the citys more active and influential urban agriculturalists can provide insight for steps to address some of issues of hunger and racial disparity (Staff Reports 2015). Sampling I used purposeful convenience sampling to select the participants. The sample was recommended by the Extension Educator for Urban Agriculture at Purdues Marion County extension office. The participants were farmers or project coordinators and employees of urban farms who did work directly related to urban agriculture. The sample included three males and three females, whose names were changed in order to protect the privacy of the participants. Ayana was a 62 year old urban farmer and community center director, Stephanie a 35 years old farm program manager, Tyler a 40 years old farmer, Marty a 31 year old farmer, Mark a 27 year old farm project coordinator, and Melissa a 38 year old manager and gardener). All of the participants were college-educated, and from middle to upper middle class backgrounds. All of the participants were also Caucasian-Americans except Ayana, who was a BlackEthiopian and long-time resident in the United States. There was an additional participant who was originally part of the study sample (an African-American male), but his interview was lost due to a malfunctioning recording device. I selected six (originally seven) interviewees because this was the number that could reasonably be studied in the time-frame I had allotted. 11 Oral Histories The first step before beginning the oral histories was to conduct background research on urban farming. I looked at previous studies where I identified trends, goals, and problems within urban farming in the United States and abroad. I then used this background study to create an interview guide. These semi-structured interview questions, presented below, helped me address key issues regarding farmers backgrounds, motivations, and feelings on race and gender justice, how urban farming could address social problems, and how the Extension could better serve them: What are some of the challenges related to social justice that urban farming can address? Talk to me about issues of race/ethnicity in urban farming. Talk to me about issues of sex/gender in urban farming. In my research, solving the problems posed by food deserts seems to be an important component in many farmers work. What are your thoughts about these challenges? Tell me about the challenge food deserts pose to health- especially that of poor, migrant, and black communities? Will Allen, author of Good Food Revolution, talks about a spiritual component of being tied to the soil. One of my favorite quotes is when he talks about kids that he apprentices at his urban farm in Milwaukee. He says Something changes in them when they put their hands in the soil for the first time. They mellow. It can be a spiritual thing simply to touch the earth if you have been disconnected from it for so long. What are your thoughts on this? What are your thought on genetically modified organisms (GMOs)? How would you weigh potential benefits that GMOs offer in comparison to potential What are your thoughts on the role that agribusiness corporations play in issues of immigration? Have you experienced or witnessed racism- shoppers not wanting to buy from minority farmers or booths at farmers markets? Are you aware of any farming programs that help immigrant refugees? 12 Following in the tradition of Charmaz (2014), questions were able to be modified throughout the interview process for clarity and completeness. The interviews were conducted in various settings including at individuals farms, at local coffee shops, or at the University of Indianapolis. The interviews conducted at the farms were especially helpful because I was able to see exactly what farmers were referring to when they spoke about the farm.1 The interviews lasted between an hour and a half and two hours. They were recorded on a digital recording device, transcribed verbatim, and then de-identified prior to coding and analysis. The full texts of the interviews as well as the study results were then given to Purdue Extension. Analysis Strategy After collecting the oral histories and transcribing them my thesis advisor and I began the first round of coding, referred to as open coding (Strauss and Corbin 1998). The purpose of open coding, simply, is to generate broad themes. We selected Melissa as the first interview to base our codebook on because her comments were most representative of all respondents. In order to build my codebook I was then able to use that to carefully read through transcripts and highlight blocks of text that related to each research question. After highlighting each quote I tagged it with a code that represented the quote. Codes were derived both inductively, from repeated reading of the transcripts, and deductively, as suggested by past literature. Using these first transcript codes, I created a codebook which had a set of codes for each research question. My advisor then double-coded to check for inter-rater reliability, and then together we refined 1 I even conducted one interview in a car parked in between a row of vegetables! 13 the code book before final coding. We found general agreement between our codes. Discrepancies were most often related to names we gave to codes and discussed until we reached agreement. We also merged some codes that were closely related. Using this codebook, I was then able to read through the remaining transcripts and code for each question. After coding the transcripts, I created a spreadsheet with the names of all of the interviewees on one axis and the codes on the other. I was then able to mark which participants made mention of which code (See Appendix). This allowed me to engage in axial codingidentifying the codes that were mentioned most often and ones that recurred together (Strauss and Corbin 1998). I then examined variability within each code. For example, the most common code for research question one was environmental justice. I then went through each interview and noted the ways respondents spoke about environmental justice. For example, some spoke of it in terms of sustainability (the process of making ecological systems more enduring), others in terms of responsibility (human obligations to the ecosystem), and yet others in terms of ramifications (the consequences of human irresponsibility). The final step in the coding process, selective coding, involved determining the overall storyline that emerged from the data (LaRossa 2012). RESULTS The research questions addressed in these oral histories sought to capture the aggregate orientations of respondents in regards to social responsibility and social justice. Respondents felt motivated by bringing about greater food security for marginalized communities. They understood this marginalization to be a consequence of obscure societal forces that were related to but not driven by racism, and even less so by patriarchy or sexism. They felt that urban 14 farming could address food access issues through education, in addition to physically providing people with fresh produce that was grown on farms. Overall, these findings demonstrate that urban agriculturalists in Indianapolis are interested in addressing problems of hunger and food access, but lack the foundational understanding of how underlying structures of racism and inequality create the symptoms that they are addressing. Motivations for Working in Urban Agriculture The first research question, What motivates you? asked subjects about their motivations for working as or with urban farmers. Their motives varied. These themes included environmental justice and food access and themes tied to the physical welfare of the earth and of people. Most commonly, however, individuals cared about improving low-income individuals access to healthy foods. Environmental justice Five of the six interviewees referred to environmental justice as a motivating factor in their work. Those who referred to environmental justice referred to it in the context of sustainability. For example, Tyler was motivated by questions on how we should act in regards to the environment, how we are responsible, what our responsibilities are, [and] what the ramifications are? Similarly, Melissa described how her concern for the environment was deeply tied to human responsibility, and how this motivation influenced her work: I think a lot of times environmental efforts focus just on the natural world and humans are the enemy, and they may be, but that isnt helpful for finding a solution where everybody can live together and where its actually sustainable over longer terms. So in that sense, its more kind of environmental stuff was our underlying motivation but all of the food access and security and social justice pieces of all that 15 certainly have become very apparent in our work here, and are [things] that Ive always had a huge heart for anyway; I just didnt necessarily know it was going to fall into place like this. These examples demonstrate a common theme among our interviewees. They were motivated by compassion, moral responsibility towards the earth, and environmental sustainability, but also understood that environmental issues are deeply connected to political issues like food access, which appropriately, was the second most commonly cited code regarding motivation. Food access Similar to environmental justice, five individuals explained that food access was one of their primary motivations for working in urban agriculture. In addressing food access, participants talked about broader food systems, personal relationships with people who struggle with access and poverty, and access to healthy food. Stephanie noted that her: motivation was generated from past work, so seeing the way that the food system currently works, knowing a lot of people that live in low food access areas and who struggle with poverty obviously a lot of our work is based on trying to make that [better], and [to] improve the equality there. Stephanie captures here that the local and the global are intimately connected by connecting her past work to the broader food system, and that her interests in food access, like many of her colleagues, was rooted in both. Respondents also discussed food access in the context of healthy food and healthy living. Mark explained that: These are people that are never going to retire, and thats why its so important to try and give them the opportunity to eat healthy on the budget that they have. I mean, household budget really dictates what you eat... Theyre saying ok, I need to eat for three dollars and feed our two kids too. So how do we make it so they can 16 eat for the three dollars and feed their two kids? Thats kind of what were working towards. It was clear that this sentiment was common among the many respondents. They all seemed to be motivated by offering healthy food access, as opposed to access through food pantries or canned food giveaways, or, as Melissa explained, agriculture that is just going to feed McDonalds feed cattle for cheap hamburgers or corn being converted into high fructose corn syrup thats giving everyone diabetes and obesity. I dont even know if I look at that as growing food really. Feelings on Racial and Gender Justice Issues The second research question explored participants feelings about race and gender in urban agriculture. Respondents were asked, among other things, How do you feel about issues of racial and gender justice? Five out of six respondents focused mostly on the experience of whiteness- either in the context of self-reflexivity (all but one of our interviewees were white), or in reference to the healthy intermixing of races, presumably as a process for reducing racial tension and bringing valuable (white) resources into poorer (black, Latino, etc.) communities. Reflexivity Melissa offered a pertinent commentary on reflexivity and how her whiteness affected her work and her role in a non-white community: Im real reluctant as a Caucasian to strong arm any of that interaction [between races], its not- I dont think thats our place The only real strategy for something like that as a white woman is to encourage all of our neighbors to come garden with us. Despite this, all of the white participants, when asked about the communities they grew up in, referred to them as normal or lacking in culture, perhaps confirming what critical race 17 theorists have called whiteness-as-norm; the belief that whiteness is normal and good and that all else is different and foreign, i.e. cultured (Fitzgerald 2014). Ahmed: Tell me about where you lived. Tyler: I dont know I mean I still value where I grew up, because many people I care about [live there], but the actual place I usually think of as a mess of suburbs and strip malls and highways, hard to tell whats north, south, east or west, just exits and shopping centers everywhere. Like I said, we were close to Philly, and identified with the city, and big Philly sports fans. We had access to cultural things in the city... but many aspects of it felt fairly non-distinctive, didnt always seem to be a lot of culture right where we lived. Reflecting this, half of the respondents were quick to dismiss race- and whiteness in particularas something that should be emphasized in urban agriculture work. They noted that problems around race existed, but that they preferred not to think about food access issues being directly related to them in any way. Marty, for example, preferred to think of hunger issues as being related to class instead of race: Ahmed: How is race connected with food and poverty, food access? Marty: So like food access in general- like sources of food in impoverished communities- that idea of food deserts is- can cross racial lines but I dont know if- Im knowledgeable enough to say it affects black folks, or Hispanic folks, or white folks more prevalently. My it seems like, lets see, to me on the surface it seems a little more of a like economic situation where you have grocery stores or companies have not decide to invest in poor neighborhoods so the food sources that they have are either like distant or terrible or overpriced. So you get, yeah you get screwed over all sorts of way. Its hard for them to get to produce or to healthy food. The healthy food they can get to is overpriced and its not usually being provided for by local business. You know... 18 Respondents also discussed whiteness in reference to the healthy intermixing of races. Ayana offered a powerful narrative on the profound effect healthy dialogue can foster: Here is how the race thing works. Major Tool Machine [a local store][the owners] daughters [white] were like, sixth and eighth grade something like, elementary school- and they wanted to come volunteer here. So we said great, so they came to volunteer. Our kids [predominantly Latino or Black] are here and those kids walk in and say we want to volunteer. And they [our kids] look at them and say, what did you do wrong? Why are you in trouble? So those girls were like, We didnt get in trouble we just want to volunteer. So its good, so we can be rewarded. So you mean you get rewarded? And were getting punished? So they were just like, they couldnt understand. They started talking like that. Then these kind of cultural relationships developed. With the two girls coming more Carmel kids started coming. So they started talking to each other. [These] urban suburban mixes have been the biggest hit for us; so these students were working together, they grew up together, now they are in high school, and we ended up hiring them. Both girls. One day, the girl from Carmel- we have two or three students that didnt have a ride, and she said I can take them. And we thought, Should we let her take them? You know we were kind of not sure. But we said, Yeah go ahead take them home. But then she came back in tears. We thought Oh no what happened!? I cannot believe thats where they live! How do they smile with us all day? How do they function? She was shocked at their houses, and the living conditions... So it was a big thing. Now they even go to the house and help them, and she was able to do a lot of things with school, helping them one on one, Do you have any issues in high school? One girl was ready to drop out and one of them really sat down to help her to finish online and helped her get her high school graduation. So they teach each other, and the other learning happened [as well]. One time the other way was, everybody says Oh Friday, pay day, we get money today, we want to go party, and Lauren just said, Uh I think Im going to just put mine in our retirement. A 17 year putting in retirement. The kids just started laughing all over the floor. She said, Bring me a computer Im going to show you! So shes calculating all of this, and she was showing them and they thought like, Whaaaat!? They said, Really it can get that big? So they spent like an hour- you think we can do that? No! So they did this. So the next year, Dajuan comes back and says That Lauren did an amazing job on me! and we thought like, what? I still have money in the bank! Remember what she did? I still save my money. And 19 Lauren eventually went to DC- George Washington University- and when they ask her about community service hours and that kind of thing, shes the only one that goes to the inner city, because now she knows how to really work with them and stuff. So they teach each other, so we purposely recruit urban to suburban mixes. Ayanas narrative, while a powerful example of how racial mixing can foster empathy and collaboration, was not necessarily representative of the group, as most did not refer to it at all. Racism Respondents (five out of the six) also discussed anti-black racism. While it was discussed as an important topic, this was mainly in reference to interpersonal racism at farmers markets (as opposed to racism as a systemic problem, as was done with food access), and that, while it must be present they had never experienced it themselves. Ahmed: Weve talked about issues of racism. Any final thought about that? Do you see it on the ground in the food scene here in Indy? Mark: I have not seen any indications of that. I have not. I really think, its a people problem, not a race, gender, ethnicity none of that. I think its a people problem. Two of the respondents, however, did allude, albeit in a sort of sideways manner, to racism as a systemic problem, especially in reference to policies and ordinances. Marty spoke about how poverty disproportionately affects people of color, and how farmers markets tend to operate in wealthier white neighborhoods: Ahmed: Have you ever experienced or witnessed racism at a farmers market to black farmers? Marty: Umm, no. I havent. But thats not a good measure, thats just me. Lets see. I think one thing that farmers markets and this is- you know farmers markets are kind of in the same situation as those grocery stores that choose not to invest in neighborhoods, theres like very little incentive 20 for a farmers market to start up and continue in an impoverished neighborhood. And thats not just the farmers markets fault, its like there is a lot of theres a huge hassle that market has to take on to accept food stamps and for the vendors to accept food stamps theres just a lot of, theres certain requirements and infrastructure that is required [and] is costly and time consuming. And you know a farmers market is a business and they need to be in a place where they know people are going to buy their produce or their items or whatever. And so most farmers markets are not in impoverished neighborhoods and Indianapolis is fairly segregated and granted there are certain areas of like upper middle class black folks but not a ton. So odds are good that like where the farmers market will be is in an area that does not have a high concentration of nonwhites. And not saying farmers markets are inherently racist coming out. So I think its a complicated thing. And I dont think that its also something that farmers markets shouldnt necessarily have to take on. Farmers market shouldnt solve racism in Indianapolis but there are all sorts of, they can help raise questions about that sort of stuff. While Marty and one other respondent reflected on the macro-lens of structural injustice and harmful policies, they did so without making a very direct connection to how these problems may be connected to race and racism. Immigrants Finally, respondents (five out of six) discussed race in reference to immigrants, especially in terms of job discrimination. Ayana, an immigrant herself, explained that: When you come in from a country where you are not allowed to speak against authority it becomes easy for an immigrant to be quiet. You know, I came here for school, but there are a lot of immigrants who come here for work- legal or illegal thats not the point. They are just grateful and so they work 24 hours [a day] if they have to. Of special note was how seldom respondents addressed gender justice issues. When it was brought up it was dismissed as a non-issue or was re-interpreted as a question about 21 demographics; respondents talked about the prevalence of women versus men on urban farms, each with differing estimates, but avoided issues related to patriarchy, gender norms, or sexism. Perhaps, as Ayana explained, gender justice was simply not a high priority for marginalized communities: Ahmed: Is there anything interesting or noteworthy regarding gender, in terms of, points of conflict, significant trends Im thinking issues of sexism, in terms of gender role expectations maybe. Ayana: We just have so many fires to put out they [the kids] are hungry, they this, they dont have uniforms [for school], their relatives have been shot they really, they have too many issues to deal with, theyre hungry every day, if there is no school lunch they have no food, that kind of stuff. So thats where we are. For others, the sentiment may be rooted in their own gender biases and assumptions. Mark, for example, when asked why more women came to the farm than men, suggested that women came because they were bored or because it was a stress reliever and serene. Surprisingly, however, the only two individuals who were not coded as dismissing gender were both men. Urban Farming as a Potential Solution The third set of questions was about how urban agriculture could be a potential solution for addressing injustice. Respondents were asked, Do you view urban farming as a potential solution to helping reduce injustice and if so, in what ways? The most common responses cited food access as the main injustice that could be addressed, and that it could be addressed through increased educational opportunities. 22 Food Access Four of the respondents discussed food access as pertaining specifically to healthy food access, others to food deserts, and others to distance from outside food sources. Stephanie captured all of these when she described the Equal Initiative project (an effort to subsidize produce from urban farms for needy families) as: A set of funds used to match SNAP purchases so that people who are in lower income situations are also able to purchase good nutritious food, because I think thats one of the biggest food justice issues. If you are living in a low food access area youre more likely to be low income, to have higher chances of chronic disease, all that stuff. So we want to offer the opportunity for people to afford the nutritious food in their neighborhood- or at least along the bus line. Stephanies response is characteristic of almost all of the farmers, who viewed themselves as community builders in the sense that providing food for marginalized people was a priority. Marty explained that while many organizations include notions of social responsibility in their missions statements, his farm did not do so explicitly. Despite that, he still saw his farm as contributing towards empowering people and offering them access to food. Ahmed: What are some challenges related to social justice that urban farming can address? Marty: Well lets see, so this is a tricky one, because I think, I think often times I think often times there is a desire or I dont know how this started, but there are a lot of, lets say there are a lot of like urban farms, urban farm programs, initiatives or whatever, that are off shoots of organizations that have some sort of social responsibility mission, and so those farms- its part of their DNA to try and address those problems directly. My own personal experience I dont, like at Inner City Farms I dont, I mean this sounds uh, hmm Im trying to figure out how to say this. 23 I dont want to say I dont, its not that I dont have time to address those things, but I dont directly. Like explicitly directly. Ahmed: And it doesnt have to be directly. Marty: Right, for me what ends up, like, the best thing that Inner City Farms can offer in that sort of regard is like, if ICF can be like a financially sustainable business, using like, vacant or underutilized land, and can create a job or two in the process, with fairly low you know, investment, like capital expenditures or whatever. Thats a good, thats a good- that can be a powerful example for like, other individuals who might, want to do something similar or looking to sort of create economic opportunities for themselves, or [to] just create food opportunities for themselves and their communities. I mean I think the idea of like, look, there is this amount of land that Im using, and Im using this amount of food, and thats great and thats impressive, the food is going to these, to CSA members, who the vast majority are like, middle or upper income individuals. I have no illusions about that, its going to restaurants that are like, who are, theyre wonderful, I love the people and the owners and the chefs, but they cater to folks who have more money. So, I think for me thats like the economic reality, but if someone like, you know I talk to, I have talked to plenty of folks over the years who like are just excited about using a vacant lot to grow vegetables for themselves or for their neighbor or whatever, and I think thats the biggest thing. Once you start taking like, people start figuring out those pools that can empower themselves and can like stop some sort of reliance on outside institutions then that can be a radical idea. Martys response reflects a sort of trickle-down economic model. He understood that his endeavor might not have a direct mission to solve problems of racial disparity and inaccessibility to food, but he did believe that by running his business well and properly, those benefits might trickle down to those who need them. 24 Education Regarding education as a means for addressing food access issues, participants identified education for farmers as very important. Tyler referred to this in reference to expanding urban farming in general: If we want to have more urban farming we need not only the space to do it but we need farmers. So like I said I didnt have any training and there arent very good options out there to get real farm training. So a big challenge is how do you learn enough to get started and know where to start and get actual farming training. Thats hard. And I dont know the solution to that. Finally, others referred to youth education on basic home and backyard gardening. Tyler described his Farm Works initiative (a youth empowerment program where youth come work on the farm for produce and pay): So Farm Works has a dual purpose; to increase food security for underserved populations and to create a sustainable employment opportunity for high school students in Indianapolis. [We] would raise money to hire high school students, I think four or five each the last few years and that was great. So the first year we had four students working for us, it was a part time job for 6 weeks during the summer, theyd work on the farm part of the time, theyd also do educational enrichment programs about food justice any topic related to farms and food in the city, and it was wonderful, it was great. There were two, three students from that first year who reapplied the second year. They got the job, we hired them, as well as a couple other folks, and you start to see these folks are broadening their sense of what food is, theyre expanding their own sense of self, in terms of what role they play in their community. In this way, urban agriculture is seen as a means for more than material benefits, but a way for students to develop life skills and the confidence to succeed and produce their own food in their communities. 25 DISCUSSION The research questions addressed above were meant to capture the overall orientations of those associated with urban agriculture on issues of social responsibility and social justice. Generally, respondents were motivated by food insecurity and lack of food access in poor and minority neighborhoods. They understood the marginality of these communities as a consequence of social forces that were related to but not driven by racism, and even less so by patriarchy or sexism. They felt that urban farming could address food access issues through education, in addition to physically providing people with fresh produce that was grown on farms. Taken together, these findings demonstrate that the urban agriculturalists in this study are interested in helping those that are marginalized. However, they do not make a strong connection between the inequality faced by marginalized groups and broader systems of structural racism. The motivations of our respondents reflected some of those that are presented in the literature. Providing food for poor and hungry communities was the number one motivation among participants. This is common to almost all of the literature reviewed (Colsanti et al. 2012). In contrast, Allen (2013) speaks of empowerment and connectivity to the earth as a central motivation for urban farming, and although this was confirmed by subjects when prompted, it did not appear to be a central motivating factor. City development, which was the third theme present in the literature, was brought up by most of the respondents in this study. The development varied however, from broader city-wide development (that might correlate with gentrification), to the development and empowerment of marginalized groups. That is, development was spoken of in contexts that produce almost opposite outcomes. Marty spoke of 26 economic development of the city as a whole; this usually meant redevelopment of homes and properties with the goal of increasing property values and encouraging wealthier patrons to move in and poorer one to move out- in other words, gentrification. Melissa, on the other hand, spoke of development as being led by marginalized groups- development that was careful not to harm the weakest members of the community by allowing for investment without squeezing out the poorest members. The racial and gender justice question results corroborate both sets of literature- those that advocate for urban farming and highlight its benefits and potential, as well as those that are critical of it. The interviewees were clearly motivated by social justice issues and were keen to discuss their work in the context of broader efforts to address racial justice, provide services for disadvantaged communities, and help address issues of food access. Others, however, represented what Reynolds called small-scale economic entrepreneurism that addresses some symptoms like hunger and access, without making clear connections to racialized roots of inequity (Guthman 2008; Reynolds 2014). Finally, questions on how urban farming can solve problems of injustice focused heavily on the environment in the literature. The critical studies, however, emphasized the need for urban agriculture to be reexamined as a means for disrupting the current predatory food system and for offering an alternative based in social equity (Poulsen and Spiker 2014). They called for this by means of greater awareness of systemic injustices, and how they are replicated within urban agricultural scenes, as well as reflexivity that prevented advantaged groups from abusing their privilege (Reynolds 2014). None of the interviewees were able to make the connections to 27 broader systems of inequality and racism, though they mentioned racism in its more localized forms. As Reynolds (2014) and others have discussed, urban agriculture as a truly viable tool for social justice must be used with the awareness that broader systems of racial justice must be challenged and dismantled if real change is to come about (Alkon, Hope, Mares 2012; Guthman 2008). One surprising finding was that only two individuals who were not coded as dismissing gender were both men. In general, the question of gender justice posed to the interviewees was often dismissed and reinterpreted as a question on gender demographics at urban farms. The above finding might suggest that the men who were interviewed were conscious of the fact that gender injustices rooted in patriarchy and sexism play a role in urban agriculture. Future research should further explore this topic. The greatest limitation of this study is that I was only able to conduct oral histories of six urban agriculturalists in Indianapolis. While this research is by no means generalizable, such generalizability is not the goal of oral histories. Nonetheless, it may be a helpful tool for the Purdue Extension as they conduct their research on ways they can better serve Marion County urban farmers. Using the transcripts and analysis provided in this study, the Extension can better serve the needs and interests of marginalized communities that are affected by urban agriculture, and secondly, further aid farmers in their logistical and practical needs. Overall, the state of urban agriculture in Indianapolis seems to be tied to the service of marginalized communities and increasing access to healthy, affordable food within them. As many of the scholars reviewed in the literature have argued, though, this is not enough. In order 28 for urban agriculturalists and their allies to truly solve problems of hunger, they must be committed to tackling the underlying problems of poverty and systemic racism. This study can be a contribution for moving towards addressing these underlying issues and creating conversation around them in the urban agriculture scene in Indianapolis. 29 APPENDIX Research Question 1: What motivates you? Ayana Stephanie 1 1 1 1 1 1 Tyler 1 Marty 1 1 1 1 1 1 Personal Business Sustainability Local Immigrants Economic Inequality Whiteness Trust Community Development Empowerment Food Access Outreach Welcoming Space Engaged Community Vacancy Gentrification Environmental Justice Axial Coding Nature Table 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 Mark 1 1 Melissa 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 Total 3 5 1 2 1 2 4 5 3 4 1 1 4 2 3 3 2 Men 1 3 0 1 0 0 2 3 1 2 0 0 2 0 1 3 1 Women 2 2 1 1 1 2 2 2 2 2 1 1 2 2 2 0 1 30 Table 2 Tyler 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 Mark 1 1 Marty 1 1 Melissa 1 Generational differences Dismissal of gender 1 Welcoming space Racism 1 Stephanie Immigrants Blackness 1 Female motivation Suspicion 1 1 Gender equal Women dominated Dismissal of Race Ayana Whiteness Slave Work Gentrification Research Question 2: How do you feel about issues of racial and gender justice? 1 1 1 1 1 1 1 1 1 1 1 Total 2 1 4 3 4 3 5 4 2 3 2 5 2 1 Men 1 0 3 2 1 1 2 1 1 2 1 2 1 0 Women 1 1 1 1 3 2 3 3 1 1 1 3 1 1 31 Table 3 Research Question 3: Do you view urban farming as a potential solution to helping reduce injustice and, if so, in what ways? Ayana 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 Melissa 1 1 1 1 1 1 1 Mark Marty 1 Tyler 1 1 Environmental Justice Education Welcoming Space Economic Inequality Outside help Immigrants Public Policy Nature Sustainable Business Empowerment Youth Vacancy Local No/Not directly Exploitation Stephanie Disabled Community Development Safety Food access 1 1 1 1 1 1 1 1 Total 6 1 5 1 5 6 4 5 4 2 3 4 4 2 4 1 2 0 2 Men 3 0 3 0 3 3 2 3 2 0 1 2 3 1 2 1 1 0 1 Women 3 1 2 1 2 3 2 2 2 2 2 2 1 1 2 0 1 0 1 32 REFERENCES Alkon, Alison Hope and Theresa Marie Mares. 2012. Food Sovereignty in US Food Movements: Radical Visions and Neoliberal Constraints. Agriculture and Human Values 29: 347-359. Allen, Will. 2013. The Good Food Revolution: Growing Healthy Food, People, and Communities. New York: Gotham Books. Buckingham, Susan. 2005. Women (Re)construct the Plot: The regen(d)eration of Urban Food Growing. Area Magazine 37 (2): 171-179. Charmaz, Kathy. 2014. Constructing Grounded Theory. Thousand Oaks, CA: Sage. Colasanti, Kathryn J.A., Michael W. Hamm, and Charlotte M. Litgens. 2012. The City as an Agricultural Powerhouse? Perspectives on Urban Agriculture from Detroit, Michigan. Urban Geography 348-369. Dubbeling, Marielle, Henk de Zeeuw, and Rene van Veenhuizen. 2010. Cities, Poverty and Food: Multi-stakeholder Policy and Planning in Urban Agriculture. Rugby, UK: Practical Action Publishers. Fitzgerald, Kathleen J. 2014. Recognizing Race and Ethnicity: Power, Privilege, and Inequality. Boulder: Westview Press. Guthman, Judith. 2008. Bringing Good Food to Others: Investigating the Subjects of Alternative Food Practice. Cultural Geographies 15: 431-447. Keiser, Barbie E. 2011. Urban Agriculture: UA is No Longer an Oxymoron, Searcher: The Magazine for Database Professionals, May 2011. 33 LaRossa, Ralph. 2012. Writing and Reviewing Manuscripts in the Multidimensional World of Qualitative Research. Journal of Marriage and Family 74: 643659. Poulsen, Melissa N., and Marie L. Spiker. John Hopkins Bloomburg School of Public Health. 2014. Integrating Urban Farms into the Social Landscape of Cities. Reynolds, Kristin. 2014. Disparity Despite Diversity: Social Injustice in New York Citys Urban Agriculture System. Antipode 47 (1): 240-259. Slater, Rachel J. 2001. Urban Agriculture, Gender, and Empowerment: An Alternative View. Development Southern Africa 18 (5). Staff Reports. 2015. Double 8 closures shock neighbors, create food deserts wishtv.com, July 23. Retrieved April 14, 2016 (http://wishtv.com/2015/07/23/double-8-foods-closesall-indy-locations/). Strauss, A., & Corbin, J. 1998. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Thousand Oaks, CA: Sage. Surls, Rachel, Gail Feenstra, Sheila Golden, Ryan Galt, Shermain Hardesty, Claire Napawan, and Cheryl Wilen. 2015. Gearing Up to Support Urban Farming in California: Preliminary Assessment. Renewable Agriculture and Food Systems 30 (01): 33-42. Tornaghi, Chiara. 2014. Critical Geography of Urban Agriculture. Progress in Human Geography. Weber, Karl, ed. 2009. Food, Inc.: A Participants Guide. New York: PublicAffairs. 34  ...

... PENS, PENCILS, AND PAIN(T) By Sarah Hamilton An Honors Project submitted to the University of Indianapolis Strain Honors College in partial fulfillment of the requirements for a Baccalaureate degree with distinction. Written under the direction of Professor Rhonda Wolverton, M.F.A. April 24, 2017 Approved by: __________________________________________________________________ Professor Rhonda Wolverton, M.F.A., Faculty Advisor ______________________________________________________________ Dr. James B. Williams, Interim Executive Director, Strain Honors College ______________________________________________________________________ First Reader ______________________________________________________________________ Second Reader PENS, PENCILS, AND PAIN(T) S. Hamilton 2 Abstract Pens, Pencils, & Pain(t) is an exploration of and reflection on my experiences with chronic low back pain through art. While those close to me knew about my pain, I struggled to describe my experiences and even found I had trouble coping emotionally. To create an effective body of work, I used the design-thinking method. This begins with defining the problem, then coming up with ideas, testing and making prototypes, building/creating the idea, and lastly analyzing the work. The analysis was crucial in this process, as it forced me to reflect on the creative process and how I responded to the problem at hand. The resulting body of work is raw and reflects not just a struggle with pain, but an internal conflict between acceptance and rejection. The pieces, unframed, with ragged edges, and nailed to the wall emphasize the harsh reality of the situation. At times the work conflicts stylistically, showing my discomfort at confronting powerful emotions. The design-thinking method combined with the creative process helped me better understand my conflict between rejecting and accepting my emotional responses towards pain. By acknowledging and confronting this internal struggle, I found that I could validate my own experiences. 2 PENS, PENCILS, AND PAIN(T) S. Hamilton 3 List of Figures Figure 1: Drowning 14 Figure 2: Pin-up Girl 15 Figure 3: Permanent 17 Figure 4: Permanent, Close-up 18 3 PENS, PENCILS, AND PAIN(T) S. Hamilton 4 Table of Contents Cover Page i Abstract ii List of Figures iii Statement of Purpose 1 Introduction 2 Personal Background 2 Literature Review 4 Method/Procedure 9 Analysis/Conclusion 13 Analysis 13 Conclusion 15 Reflection 19 References 22 Appendices 24 Appendix A: Products Produced 24 Appendix B: Exhibition Pieces 25 4 PENS, PENCILS, AND PAIN(T) S. Hamilton 5 Statement of Purpose By keeping an art journal, creating a body of artwork to portray my struggles with chronic low back pain, and analyzing these through the design-thinking method, I critically reflected on my internal struggle to cope with the emotional and physical aspects of pain. The design-thinking method was the foundation of this critical reflection, as it forced me to not only analyze my artwork, but to confront my emotional responses to these experiences. The resulting body of artwork gave me more than insight into my chronic pain. The process of creating art through the design-thinking method empowered me to validate my experiences. 5 PENS, PENCILS, AND PAIN(T) S. Hamilton 6 Introduction Introduction: Personal Background Even though I have gone through the moment in my head at least a thousand times, I am only now thinking of it as sensory overload. I do not know if that is even the right word, the accurate word, but I can feel that word in the memory of that moment, the same way that I can still feel the panic. I sat there at the benchtop, not even a half hour through a two-hour physics lecture, and I was sure I was going to lose my sanity. In that moment, nothing else existed except for that overwhelming pain. It consumed me. I knew that the professor was talking, just like I knew that I should be paying attention and taking notes, but I could not hear anything over the blood drumming through my ears. My thoughts were literal chaos unleashed: it hurts so much, its too much, everything is too much, racing, everything is, its all too much, I cant do this, I cantI cant think, I cant do this, I cant keep doing this, my head is, I cant, I cant. Eventually I stopped understanding those words too. Pencil down, hands tangled in my hair on either side of my head, staring at nothing but the benchtop, I felt like I was drowning. I have been living with chronic low back pain for over four years now, and while I wish that that moment was an isolated one, the worst of the worst, it was just one of many. There were so many moments like that, usually moments where I found myself hidden under blankets, curled up tight, tighter, like if I just made myself smaller I could melt away. Sometimes the pain is aching, sometimes throbbing, and sometimes it feels like being broken in half, or like being torn apart with slow deliberation. As I am writing this, I can feel my breathing picking up, and that desire to hide is back, even though I 6 PENS, PENCILS, AND PAIN(T) S. Hamilton 7 know that there is nowhere for me to hide where the pain will not find me. The pain started during my senior year of high school, and to the puzzlement of seemingly every health professional, my pain is not the result of an injury. I woke up like this one day during that senior year, and the only potential cause for that pain was a partially herniated disc, found months after the onset of pain in my first MRI. I have seen massage therapists, chiropractors, a spinal surgeon, physical therapists, an orthopedic doctor, a pain management specialist, a rheumatologist, and personal trainers, all with little to no reduction in pain. The first two years of pain, though challenging, were nothing compared to the third year, which brings this explanation back to the physics lecture. I made it out of the classroom after two hours, though I was stopped at the door by the professor, who had noticed my odd behavior. I told him I was fine, just under the weather, and went back to my dorm. If I could sum up last year in a word, it would be fine. I told myself that I was fine, just like I told the professor I was fine, like I told the lunch lady I was fine, like I told my friends I was fine, like I told my coach I was fine. But the pain got worse. I got worse. I told myself that I was coping, that I was fine, but as these moments of drowning in pain continued, I knew that whatever I was, the word for it was not fine. Whatever I was doing, it was not coping. That realization, though freeing, was also terrifying. After so many draining attempts at finding answers in the medical field, I knew I needed to try something different. Introduction: Literature Review 7 PENS, PENCILS, AND PAIN(T) S. Hamilton 8 What many people fail to understand about chronic pain is that it is all encompassing; it has no limits, no restrictions, and no timeline, and therefore seeps into every aspect of life. It takes away not only patience, but trust, hope, energy, and life (The long-term effects of untreated chronic pain, 2014). It seems obvious, then, that people suffering from chronic pain must learn to manage their pain and cope with their reality redefined by pain. However, chronic pain is more than coping with and managing pain. People living with chronic pain may experience anxiety, isolation, depression, hopelessness, frustration, anger, and fear as a result of living with chronic pain (Pasquale, 2009). Amy Rheaume (2016) further explains the connection between the mind and the body in terms of chronic conditions: [Additional complications], in turn can result in increased pain, further loss of motivation, increased fatigue and additional changes in sleeping or eating patterns all of which make managing [ones] chronic illness even more difficult. The result becomes a self-reinforcing, vicious cycle of intensifying symptoms and negative emotions. (para. 4) Chronic pain, like other chronic conditions, thus demonstrates the importance of understanding the concept of mind-body connection, in which the thoughts, feelings, beliefs, and attitudes can positively or negatively affectbiological functioning (Hart, 2015). In simplest terms, mental state and physical well-being are closely connected (Hart, 2015). Mind-body therapies and techniques focus on the role of the mind-body 8 PENS, PENCILS, AND PAIN(T) S. Hamilton 9 connection to improve physical well-being. Generally, this is done through activities that help people recognize their mental states and learn to redirect damaging thoughts and emotions. Some mind-body therapies include but are not limited to tai chi, meditation, yoga, biofeedback, cognitive-behavioral therapy, and creative art therapies, including art therapy. The key to these therapies is increasing awareness of the relationship between mental state and physical health (Hart, 2015). As described by Dr. James Gordon, all the organs of [the] body and all the emotional responses [people] have, share a common chemical language and are constantly communicating with one another (as cited in Hart, 2015). Art is one such outlet for enhancing this mind-body connection for people living with chronic pain. It is important to remember that dealing with chronic pain can leave people with difficult emotions and experiences which they may struggle to cope with and express (American Chronic Pain Association, 2013a). However, art therapy provides a way for people to express these emotions and experiences which they otherwise may not know how to express. Art therapy as a mind-body therapy is the deliberate use of artmaking to address psychological and emotional needs, facilitated by an art therapist (Art Therapy Alliance, n.d.). Unlike some treatments which seek a set numerical outcome, art therapy seeks more subjective outcomes, like fostering self-expression, creat[ing] coping skills, manag[ing] sense of self, and strengthen[ing] sense of self (Art Therapy Alliance, n.d.). The end result of art therapy is not a number, graph, or chart, but a piece of art that expresses feelings and ideas, and yet the art itself is not the goal of art therapy. The purpose of art therapy is helping people through the process of making art, during 9 PENS, PENCILS, AND PAIN(T) 10 S. Hamilton which they can gain awareness and insight into their emotional and mental state. Art, similarly, does not seek an ending the way that the scientific method does. It is about the process of creating rather than what is created. The process of creating is in itself a means of escaping from reality, creating a new reality, or even both. Focusing on the creative process generally helps distract people from their pain, and eventually, rather than escaping reality, they are able to confront their reality (American Chronic Pain Association, 2013b). Dealing with pain through the process of making art is not new. Frida Kahlo, perhaps one of the most well-known artists who dealt with chronic pain through art, portrayed her experiences in often gruesome and disturbing paintings (Frida Kahlo biography, art, and analysis of works, n.d.). However, her work depicts not a life of giving in to pain, but of living in spite of it, and most importantly, finding herself in art. Carlos Fuentes (1995) notes this as one of her most defining skills, as her selfportraits are beautiful for the same reason as Rembrandts: They show us the successive identities of a human who is not yet, but who is becoming (p. 16). Rather than painting for the sake of resolution, her work shows not only the continuation of the creative process, but of her own process of becoming her own person. Fuentes (1995) also acknowledges that through her art, Kahlo seems to come to terms with her own reality: The horrible, the painful, can lead us to the truth of self-knowledge (p. 16). Her art was not a means of demonstrating her feelings to those around her in the hopes of gaining their understanding, but instead reflects personal dialogues with herself. Sarah M. Lowe (1995) draws a similar conclusion about Kahlos personal journal, claiming that Kahlos 10 PENS, PENCILS, AND PAIN(T) 11 S. Hamilton motivation has less to do with communication than with negotiating her relationship to herself (p. 25). Kahlos work therefore embodies mind-body therapy, as her work allowed her a way to communicate with herself and reconcile her emotions in response to her lifes traumatic events. Nevertheless, pain can stem from different sources of personal conflict, as in the case of Vincent van Gogh. While van Gogh is well known for his works like Starry Night, one of his greatest struggles can be seen in a series of three paintings, Van Goghs Bedrooms. Throughout his life, van Gogh wandered like a vagrant, seemingly unable to find a true sense of home (Van Gogh's bedrooms, n.d.). Like Kahlo, van Gogh does not seek to communicate this personal dilemma through art as an end product, but rather explores it within himself through the series of the three paintings. The first bedroom, painted when he arrived at the famous Yellow House; the second, when he was at the asylum in Saint-Remy; and the third, made a few weeks after the second as a present to his sister and mother, are each unique, despite being based on the same room (Van Gogh's bedrooms, n.d.). These differences, some subtle and some obvious, are believed to depict changes in his relationship to the idea of home and his intense desire to have a sense of place. Again, his art reflects changes within his own mindset, and is indicative of his process of looking for home. At no point is there any indication that he intended to paint the room three times, but rather that as his feelings and concept of home changed, his visual representation of it changed as well (Van Gogh's bedrooms, n.d.). His art shows the process, then, not of finding a home, but of how he changed the way that he related to home as a concept, how he mourned its loss in his life, and yet continued to 11 PENS, PENCILS, AND PAIN(T) 12 S. Hamilton hope and search for it. The process evokes an eternal hope and his inner search for a feeling of home. Like Kahlo, Van Goghs emotional search happens within the creative process, while the paintings he produced are merely evidence of his trials and selfexploration. In many cases, the creative process is not necessarily about an escape from reality. It is a way of dealing with reality and saying what cannot be said with words or that which is too difficult or painful to say. Where pain may seem like a dead end, art can provide an alternate route, acting as a travelling companion and making the process more endurable. It is not about finding the destination, but about learning how to enjoy the journey. 12 PENS, PENCILS, AND PAIN(T) 13 S. Hamilton Method/Procedure In order to provide structure and direction for the creative process, I used the design-thinking method throughout every step of the project. The design-thinking method used in this project was defined by five major stages, all of which are explained below. 1.) Delineate: At this stage, I defined the problem at hand. While this step began with defining the problem in the statement of purpose, I also began every journal sketch and exhibition piece by defining the problem at hand. This allowed me to focus on a specific message or idea for each sketch and exhibition piece. However, if I found that I was struggling to present an idea the way I wanted to through art, I would reexamine the delineation step to better understand what it was I wanted to portray. 2.) Investigate: This step involved research. Though this step involved research in the form of reading and reflecting on current literature, as in the literature review, it also involved artistic research. Taking ART 290, Drawing II, for example, required artistic research in the form of experimenting with different media, like oil pastel, prismacolor pencil, watercolor, and micron pen. By learning about new materials from the class projects and other students, I opened up new media options for exploration once I began planning for larger exhibition pieces. 3.) Ideate & Create: In this step, I explored different ideas for art pieces and brought those ideas to life. Through journaling different sketches and ideas, I 13 PENS, PENCILS, AND PAIN(T) 14 S. Hamilton explored concepts that could be used on larger scale in the final exhibition. By expanding on ideas that were underdeveloped, I was able to evaluate different ideas, as well as different materials to be used to create those ideas. 4.) Designate & Generate: Designating involved choosing what the final result/design would be, and generating that result/design for an exhibition of the final body of work I created. Some pieces found in the exhibit involved several attempts at ideation and creation, whereas other ideas went straight to designating and generating without revision. 5.) Evaluate: The final step of the design-thinking method required me to reflect on what I have learned throughout the creative process and how it has been valuable to me. While I evaluated each sketch and exhibition piece not only through its creation process, but also after its final creation, personal evaluation became more important throughout the creative process. I not only reflected on my art, but reflected on my struggles to create art, my emotional responses to the art I made, and my responses to pain within my own life. The design-thinking method did not require that I work sequentially through the five stages, so I was able to go back and forth between stages as needed. In terms of the larger exhibition pieces, for example, I often started generating a new piece based off prior journal sketches and ideas. However, if I found myself struggling to generate an idea effectively, I would go back to my journal to brainstorm and create the idea again, or even investigate the use of different media and materials. Exhibition pieces were also created using the design-thinking method, and often 14 PENS, PENCILS, AND PAIN(T) 15 S. Hamilton involved more than one attempt at creation. Each piece would start from an idea, usually based off another idea or sketch from the journal, but some pieces were generated without referencing prior sketches in the journal. However, these pieces also required ideation & creation by experimenting with different kinds of paper, media, and design. Some of these pieces required little experimentation and fewer attempts to successfully generate, though this was uncommon. This would be akin to the first draft of an essay becoming the final draft with little to no revision. Most of the larger pieces were not developed in this manner, and required many rounds of investigation, ideation & creation, designation & generation, and evaluation in order to develop a final exhibition piece. The evaluation stage, however, was the most crucial stage throughout the project. Instead of using the evaluation stage as the end-stage of all the others, it was more so a way to evaluate and reflect on the piece after every revision and reworking of a piece. Furthermore, the evaluation stage necessitated deep and meaningful personal reflection that went beyond reflecting on the piece as a physical creation, but as the embodiment of my struggles with difficult experiences. 15 PENS, PENCILS, AND PAIN(T) 16 S. Hamilton Analysis Analysis of the exhibition pieces is not limited to the artwork itself, but extends to how the pieces were displayed. Rather than hanging the pieces in frames, the pieces were left bare, with no matting and torn, rough edges, and then nailed into the wall. This display was purposeful, as the rawness of the rough edges and the lack of frames presented pieces that were intentionally unfinished. I have not resolved my experiences with pain, nor my feelings towards pain, and leaving the pieces in a state of incompleteness mirrors this. Leaving the pieces in this state of nakedness, without the protection of glass and solid wood, also exposes the vulnerability that is present throughout each piece. Exposing each piece to puncturing nails takes this another step further. Like adding insult to injury, the nails add permanent damage to the vulnerable piece that cannot be undone, just as the pieces show my own perception of being vulnerable to continuous damage. The media used is also significant, as I used gravity and the properties of watercolors and ink to create splatters, drips, and wrinkling of the paper. For me, allowing gravity and the liquid media to take control of how the media would interact with the piece was also symbolic of relinquishing control within my own pain experiences. I cannot control my pain, much like I cannot control every splatter and every drip, but I can control how I respond to it, as I can control how the rest of each piece responds to each new drip and splatter. This also created pieces that showed reaction to the circumstances created by the nature of the media, rather than complete 16 PENS, PENCILS, AND PAIN(T) 17 S. Hamilton control over the media itself. In much the same way, I lack control over my pain and some of the circumstances I have found myself in because of it, and have often struggled with this lack of control. In addition to the media, damage done to each piece was intentional, from using needle and thread to stitch parts of pieces together, to ripping pieces apart and putting them back together with clothespins. This intentional damage not only represents physical pain in some cases, but also mental and emotional struggles. In some cases, like Drowning (see Figure 1), tearing is a physical representation of feeling overwhelmed beyond repair, whereas in Pin-up Girl (see Figure 2), it is a physical representation of physical pain. In some cases, like Permanent (see Figure 3), the ripping is less obvious, but is meant to add dimension and make the center of focus seem as though it is somewhat removed from what is happening in the rest of the piece, unable to accept the situation at hand. 17 PENS, PENCILS, AND PAIN(T) 18 S. Hamilton Figure 1. Exhibition piece: Drowning. Media: Ink, watercolor. 18 PENS, PENCILS, AND PAIN(T) 19 S. Hamilton Figure 2. Exhibition piece: Pin-up Girl. Media: Mixed media. Lastly, the style of the pieces as a group is intentionally rough to reflect the rawness of my experiences with pain. However, the pieces sometimes conflict stylistically, as in the case of Permanent (see Figure 3). While the central figure and the 19 PENS, PENCILS, AND PAIN(T) 20 S. Hamilton hands on its back are composed of bold, edgy lines, the mermaid in the center of the back of the figure is neater and almost cartoonish (see Figure 4). This piece was emotionally draining to design and create, as it presented feelings that made me feel distinctly vulnerable. In my discomfort with that vulnerability, I tried to make something perfect rather than something real, which is how the mermaid became so neat in comparison to the rest of the piece. As I do in my everyday life, I had tried to compensate for my emotions and vulnerability by portraying something softer and more controlled, whereas the rest of the piece transitions from greater control and order to less control and order. This clash between the styles present in the piece, along with the rapid transition from light to dark and order to disorder, show my personal struggle between rejection and acceptance of my pain. 20 PENS, PENCILS, AND PAIN(T) 21 S. Hamilton Figure 3. Exhibition piece: Permanent. Media: Ink, watercolor. 21 PENS, PENCILS, AND PAIN(T) 22 S. Hamilton Figure 4. Exhibition piece: Permanent, close-up. Media: Ink, watercolor. 22 PENS, PENCILS, AND PAIN(T) 23 S. Hamilton Reflection As I continue to create art, whether as a means of reflecting on and understanding my pain or not, it is important that I continue to be honest in what I create. While art can distract from pain, it also serves as a means for confronting the reality of the situation (American Chronic Pain Association, 2013b). Too often throughout this project, I found myself afraid to make exactly what I saw in my head because to bring that image into existence would mean acknowledging that the feelings and experiences behind those images were real. However, without honestly portraying these feelings and experiences, I could not confront the reality of my pain. As Fuentes (1995) notes, the horrible, the painful, can lead us to the truth of self-knowledge (p. 16). Without accepting that horrible and painful experiences existed in my life, though, I could not gain selfknowledge. It took several nights of standing in front of an unfinished Permanent to finally realize that I was desperately trying to hide my fears, anxieties, and pain from myself, which was making it impossible to move forward with the piece. I told myself that I had accepted my pain, but standing in front of that paper, suffocating in my own lie, I knew I had not. I wanted to show that I had, but it was not true. Realizing this while sitting on the tile floor of my dorm, in front of that large piece of paper, I saw something that I had tried to make pretty. My pain was not pretty, though. I was caught in an excruciating limbo; unable to reject or accept my experiences and feelings, I was instead resigning myself to not feeling anything. But not feeling was not working, and it was not 23 PENS, PENCILS, AND PAIN(T) 24 S. Hamilton going to make that large paper any less daunting. I had to embrace the process of opening old wounds and plastering them all over that paper, and I had to accept that being that vulnerable was okay. I had to know that it was okay to expose those wounds to the open air, to that paper, and to myself. It was okay, in other words, to be honest about not being okay. While I was afraid of being honest with myself, I was also afraid of how others would perceive my work. I was afraid of what others would think, as if their validation of my art would validate my pain. It was a crippling thought process, one that had the potential to derail the entire design-thinking method. In fearing others reactions, I was also searching for their approval, and this became a way to search for an ending. Working for the sake of an ending did not work with the design-thinking method, because like art, the method emphasizes the process of creating rather than the created product. However, after little to no success from various treatments, I desperately wanted to feel like my pain and experiences were valid. Though I was struggling to deal with my difficult experiences and feelings that resulted from living with chronic pain, I felt like I could not express myself openly. If my pain and experiences were not valid, I reasoned, then my responses to them were not valid either. The more I attempted to draw and paint with the intent of gaining someone elses understanding, though, the more I realized that I was looking outwards when I should have been looking inwards. Kahlo did not seek acceptance or understanding from others, but rather sought to reflect on personal dialogues with herself, and Van Goghs work likewise points to inward reflection and his changes in mindset. Similarly, art therapy 24 PENS, PENCILS, AND PAIN(T) 25 S. Hamilton aims to manage and strengthen sense of self through the creation of art, but does not focus on others perceptions of the creative product (Art Therapy Alliance, n.d.). When I finally let go of trying to gain approval, I found that by acknowledging and accepting my experiences for what they were, I was validating them myself. What was important, then, was not how others perceived my work, but the process through which that work was created. In light of this project, I also need to continue exploring not only the role of art in my journey with pain, but the role that it may play in other peoples journeys. As I continue my education to become a doctor of physical therapy, I will encounter many people who have struggled as I have struggled, with little to no improvement from medical treatments. To better care for these individuals, it is important that I consider methods for holistic care that cater not only to physical needs, but mental and emotional needs as well. Rather than rejecting art as a means for understanding difficult experiences, I can be a voice within the profession that stands up for the merit of art in patients understanding of their experiences. 25 PENS, PENCILS, AND PAIN(T) 26 S. Hamilton References About art therapy. (n.d.). Art Therapy Alliance. Retrieved from http://www.arttherapyalliance.org/AboutArtTherapy.html American Chronic Pain Association. (2013a). Art of pain management. Retrieved from https://theacpa.org/uploads/Art_and_Music_final.pdf American Chronic Pain Association. (2013b, September). The art of pain management. The Chronicle. Retrieved from https://theacpa.org/Chronicle Frida Kahlo biography, art, and analysis of works. (n.d.). The art story:Modern art insight. Retrieved, from http://www.theartstory.org/artist-kahlofrida.htm Fuentes, C. (1995). Introduction. P. Freeman (Ed.), The diary of Frida Kahlo: An intimate self-portrait (pp. 7-24). New York, NY: Harry N. Abrams. Design process [Chart]. (2016). Retrieved from http://www.uxswitch.com/best-portfolios-on-uxswitch/ Hart, P. (2015, August). Mind-body therapies. Retrieved from http://www.takingcharge.csh.umn.edu/explore-healing-practices/what-aremind-body-therapies Lowe, S.M. (1995). Essay. P. Freeman (Ed.), The diary of Frida Kahlo: an intimate self-portrait (pp. 25-29). New York, NY: Harry N. Abrams. Pasquale, M., LMSW. (2009, September). The emotional impact of the pain experience. Retrieved from https://www.hss.edu/conditions_emotionalimpact-pain-experience.asp 26 PENS, PENCILS, AND PAIN(T) 27 S. Hamilton Rheaume, A. (2016, September 19). The most important thing doctors fail to tell you about having a chronic condition [Web log post]. Retrieved from https://themighty.com/2016/09/grief-a-side-effect-of-chronic-disease/ The long-term effects of untreated chronic pain. (2014). Integrative pain center of Arizona. Retrieved from http://www.ipcaz.org/long-term-effectsuntreated-chronic-pain/ U of Rochester Medical Center. (n.d.). Biopsychosocial approach [Fact sheet]. Retrieved from https://www.urmc.rochester.edu/medialibraries/urmcmedia/education/md/ documents/biopsychosocial-model-approach.pdf Van Gogh's bedrooms. (n.d.). Art institute of Chicago. Retrieved from http://www.artic.edu/exhibition/van-goghs-bedrooms 27 PENS, PENCILS, AND PAIN(T) 28 S. Hamilton Appendix A: Product Produced Through this project, I created a journal of sketches and analyses, eleven pieces for exhibition, an exhibition of my work throughout this project, and a presentation for Scholars Day. For the eleven exhibition pieces, see Appendix B. 28 PENS, PENCILS, AND PAIN(T) 29 S. Hamilton Appendix B: Exhibition Pieces Exhibition piece, Drowning. Media: Ink, watercolor. 29 PENS, PENCILS, AND PAIN(T) 30 S. Hamilton Exhibition piece, Safe Space. Media: Ink, watercolor. 30 PENS, PENCILS, AND PAIN(T) 31 S. Hamilton Exhibition piece, Drowning. Media: Ink, watercolor. 31 PENS, PENCILS, AND PAIN(T) 32 S. Hamilton Exhibition piece, Pin-up Girl. Media: Mixed media. 32 PENS, PENCILS, AND PAIN(T) 33 S. Hamilton Exhibition piece, Sacrilege. Media: Mixed media. 33 PENS, PENCILS, AND PAIN(T) 34 S. Hamilton Exhibition piece, Breaking; Broken. Media: Mixed media. 34 PENS, PENCILS, AND PAIN(T) 35 S. Hamilton Exhibition piece, Its fine; everythings fine. Media: Mixed media. 35 PENS, PENCILS, AND PAIN(T) 36 S. Hamilton Exhibition piece, Rate your pain for me?. Media: Ink, watercolor. 36 PENS, PENCILS, AND PAIN(T) 37 S. Hamilton Exhibition piece, Long Nights. Media: Digital, inkjet printer. 37 PENS, PENCILS, AND PAIN(T) 38 S. Hamilton Exhibition piece, Whats wrong?. Media: Digital, inkjet printer. 38 PENS, PENCILS, AND PAIN(T) 39 S. Hamilton Exhibition piece, Door Stops. Media: Digital, inkjet printer. 39  ...

... Running Head: DOLPHIN-ASSISTED THERAPY 1 Pediatric Home Program after Completion of a Dolphin-Assisted Therapy Program: A Doctoral Capstone Experience Taylor Millar, OTS May, 2018 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Beth Ann Walker, PhD, OTR DOLPHIN-ASSISTED THERAPY 2 A Capstone Project Entitled Pediatric Home Program after Completion of a Dolphin-Assisted Therapy Program: A Doctoral Capstone Experience Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. Taylor Millar, 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 DOLPHIN-ASSISTED THERAPY 3 Abstract Island Dolphin Care, a not-for-profit, provides dolphin-assisted therapy programs for people with special needs. A needs assessment was completed by the therapy staff at IDC immediately after the therapy season ended in November 2017. The purpose of this DCE project was to to explore the potential role of occupational therapy in a non-traditional practice setting and create a home program to increase carryover of skills for children who participate in the dolphin-assisted therapy programs. Based on a review of the literature and personal experience, the home program was designed to include fun, cost-effective, and therapeutic activities divided into five domains: gross motor skills, fine motor skills, sensory integration, self-regulation, and speech/language skills. Feedback regarding the home program was obtained from two families. Parents reported the activities in the home program helped increase carryover and generalization of skills for their children into the home, school, and community setting. The book was well received by the families and met the need of the facility, but it was recommend to create multiple books for the additional populations being served. It is recommend that the facility utilize an outcome measure to determine effectiveness of the home program. The site determined having an occupational therapist on staff would provide a unique perspective to the interdisciplinary approach. DOLPHIN-ASSISTED THERAPY 4 Pediatric Home Program after Completion of a Dolphin-Assisted Therapy Program: A Doctoral Capstone Experience It is estimated that approximately one billion people, 15% of the worlds population, are currently living with a disability (The World Bank, 2017). The Centers for Disease Control and Prevention (2015) reported that approximately 15%, or one in six children ages 3-17 in the United States have one or more developmental disabilities including learning, physical, behavior, and/or language impairments. Symptoms of various developmental disabilities include but are not limited to muscle weakness, hyperactivity, difficulty planning and controlling movement, delayed communication, anxiety, and difficulty learning (Akins et al., 2014). Medical professionals use symptoms of developmental disabilities to establish goals for improvement in both traditional and complementary/alternative medicine (CAM) therapies. Research has shown that more than 50% of parents raising children with a disability have tried at least one CAM method to improve symptoms (Kreivinien & Kleiva, 2017). Some CAM treatments include dietary supplements, diet modification, massage, and animal-assisted therapy (Akins et al., 2014). Background Information Island Dolphin Care, a not-for-profit organization in Key Largo, Florida, provides a unique, motivational, and educational experience for children and adults with special needs and their families to participate in dolphin-assisted therapy programs that enable the individuals to achieve goals and reach their maximum potential (Island Dolphin Care [IDC]), 2017). Established in 1997, the family-centered business has grown substantially to meet the needs of all people with special needs and their families by offering a variety of therapy programs. Dolphin-assisted therapy (DAT) programs offered at IDC include a single-day group veteran DOLPHIN-ASSISTED THERAPY 5 program, a half-day dolphin talk group program for children and adolescents with disabilities, and a 5-day therapy program for people ages three and up with disabilities that includes both classroom and water sessions. All therapy programs, at minimum, include a dolphin interaction, art project, and marine animal education session. The most popular program at IDC is the 5-day therapy program, which is in session from the beginning of March to the end of November every year. The participants of this program most commonly are children, however adults and older adults with special needs are welcome to participate as well. Licensed therapists, with backgrounds in recreational therapy and special education, assist and mentor clients to reach goals and maximize potential. Island Dolphin Care utilizes evidence-based, therapeutic methods and innovative assistive technology in the areas of sensory integration, gross motor skills, fine motor skills, social interaction, communication, language, organization, and self-esteem. The combination of therapeutic activities with a joyful experience of swimming with dolphins, provides the motivation and tools needed for the participants to reach their greatest potential (IDC, 2017). A previous family who attended the 5-day DAT program at IDC stated in a published periodical, They brought us closer as a family, and brought our little man, Jamie, closer to his full potential (Whitford, 2017). Currently, IDC can provide therapy for eight families in a single week (IDC, 2017). Each family participates in approximately one and a half hours of therapy each day for the duration of the 5-day program. A typical day involves 60 minutes of classroom session which focuses on the goals that the family established in the application, but also therapist goals for the client including motor skills, behavior, social interaction, speech, etc. Immediately following the classroom session, the family participates in 20 minutes of DAT in the water, which reiterates the skills addressed in the classroom. Additionally, each Wednesday the families are invited to a DOLPHIN-ASSISTED THERAPY 6 cookout that allows the families to interact with all the families participating in the program that week to promote bonding and social interaction. Literature Review DAT is a branch of animal-assisted therapy in which dolphins are used as a therapeutic mode for treatment (Dilts, Trompisch, Bergquist, 2011). Treatment sessions are goal-directed and client-centered in the areas of physical, cognitive, social, emotional functioning, and overall wellbeing (Kreivinien & Kleiva, 2017). The use of dolphins as a therapeutic mode for treatment is a new and emerging practice within the area of dolphin-human interactions and CAM therapies. DAT has limited qualitative and quantitative research, yielding mixed results (Kreivinien & Kleiva, 2017). Despite limited research, positive outcomes have been reported (Dilts et al., 2011; Griffioen & Enders-Slegers, 2014; Kohn & Oerter, 2013; Kreivinien & Kleiva, 2017; Nathanson, 1998; Nathanson, de Castro, Friend, & McMahon, 1997). Many researchers have focused on the short-term effectiveness of DAT, whereas only one reviewed literature article has discussed the long-term effectiveness (Dilts et al., 2011; Griffioen & Enders-Slegers, 2014; Kohn & Oerter, 2013; Kreivinien & Kleiva, 2017; Nathanson, 1998; Nathanson et al., 1997). It is important to note that DAT should be used complementary to traditional therapy, not as a replacement, due to the unique nature and short-term participation in DAT programs around the world (Nathanson et al., 1997). Nathanson and his team at the Dolphin Human Therapy Centre, another DAT program in Key Largo, FL, participated in a pre-post test research study where researchers examined the effect of DAT in terms of four domains: cognition, emotion, conspicuous behavior, and motor skills (Kohn & Oerter, 2013). At 6 weeks and 6 months after the therapy program, parents, teachers, and home therapists reported a statistical improvement in all four domains using a 5- DOLPHIN-ASSISTED THERAPY 7 point Likert scale, with the largest reported increase in motor skills (Kohn & Oerter, 2013). Likewise, in terms of cognitive development, Griffioen & Enders-Slegers (2014) found a significant increase in verbalization and a significant decrease in impulsiveness immediately following and 6 months after DAT for children with down-syndrome. The skill recognition of persons improved during the DAT program, however carryover of the skill was not maintained 6 months after completing program (Griffioen & Enders-Slegers, 2014). When compared to traditional physical and speech-language therapy, researchers found that DAT is more cost-effective and achieves positive outcomes more quickly for children with severe cognitive and physical disabilities (Nathanson et al, 1997). After two weeks of DAT, 71% of children were able to complete specific fine motor task based on baseline level of function by the end of the DAT sessions, compared to 0% of children who participated in 6months of traditional therapy. Nathanson (1998) found that 50% of children with severe disabilities improved or maintained behavior modification skills 12 months after completion of the DAT program. Additionally, this same group of parents received both a binder of information and a videotape of activities for behavior management, individually designed by the therapist as part of treatment to meet the goals for each child. The parents rated the resource book as useful and the video as very useful for parental follow through after completion of the therapy program (Nathanson, 1998). Another area addressed in DAT in the literature is child-family interactions; similarly, this domain has limited data and yielded mixed results (Kreivinien & Kleiva, 2017; Stumpf & Breitenbach, 2014). Special needs or disability of one family member affects the welfare of the whole family, showing a need to improve the family-child dynamic and interactions within the home (Kreivinien & Kleiva, 2017; Stumpf & Breitenbach, 2014). Researchers found that after DOLPHIN-ASSISTED THERAPY 8 family-centered DAT, parents reported improvements in communication and social-emotional behavior 4 weeks and 6 months after therapy (Breitenbach, Stumpf, Fersen, & Ebert, 2009; Stumpf & Breitenbach, 2014). Also, parent-reported quality of life significantly improved 4 weeks after therapy, but not 6 months (Stumpf & Breitenbach, 2014). Families and medical professionals have reported positive improvements and benefits in many different domains for their children up to 6 months after completion of a DAT program (Breitenbach et al., 2009; Griffioen & Enders-Slegers, 2014; Kohn & Oerter, 2013; Kreivinien & Kleiva, 2017). Current literature has not addressed the long-term effectiveness of DAT after program completion. Additionally, only one research study has provided a home program or resources for the home environment to increase carryover of skills developed in a DAT program. Home programs, specific to this population, are defined as therapeutic activities aimed toward achieving desired therapeutic outcomes completed by both the client and their family in the home environment (Novak & Berry, 2014). Wuang, Ho, & Su (2013) found that a homebased occupational therapy program produced significant improvements in the areas of fine motor function and activity participation for children with intellectual disabilities. Additionally, integrating play activities with goal-directed, evidence-based therapy in the home setting has been found to increase motivation to participate and compliance with the home-based therapy program (Novak & Berry, 2014; Peck-Murray, 2015). Opinions about the best and most effective approaches to treatment for children with disabilities vary among health professionals, researchers, and parents. Despite differing opinions, there has been a shift in perspective from approaches trying to fix the underlying problem to approaches that promote increased participation and performance in meaningful activities or occupations (Skelton & Rosenbaum, 2010). Occupations are daily life activities in DOLPHIN-ASSISTED THERAPY 9 which people engage that have meaning and purpose specific to the client (American Occupational Therapy Association, 2014). With this new perspective comes new possibilities for meaningful, client-centered treatment ideas that focus on improving performance of meaningful occupations. According to Skelton & Rosenbaum (2010), Dynamic Systems Theory (DST) is a combination of theories to form the idea that many factors connect to create the developmental outcome. This theory suggest that guiding therapy with a search for normality may be inappropriate. Therapeutic approaches should instead utilize strategies that are most efficient and effective for the individual client, even if they may be associated with a disability. Theories are used as a guide for traditional and CAM therapies, allowing therapists to identify strategies that are unique and client-centered to improve performance and increase participation in occupations (Skelton & Rosenbaum, 2010). Dynamic Systems Theory is the most appropriate theory to guide a student occupational therapy Doctoral Capstone Experience (DCE) in DAT for children and adults with various disabilities. At IDC, clients and their families determine goals to be addressed in both the classroom and DAT water sessions. Therapists with experience in DAT can use DST to collaborate with the families to establish unique, client-centered treatment ideas to help increase performance and participation in occupations, rather than trying to fix the underlying problem. Each water and classroom session has an outlined plan working towards a specific goal. However, adaptations can be made depending on what is most efficient and effective for the client at that moment in time to promote success. Additionally, since the person and environment interact with each other to either support or hinder participation, it is important to provide a supportive home environment for children with disabilities in order to promote successful participation in occupations that are meaningful DOLPHIN-ASSISTED THERAPY 10 and purposeful to them. Based on foundations of DST, creation of a therapeutic activity book with graded therapeutic activities will help meet the need of increased carryover and participation in therapy-based activities beyond the typical therapy setting. The goal of this activity book is to aid clients in meeting client-centered goals for traditional therapy after completion of the DAT program. The purpose of this doctoral capstone experience is to increase participation and performance in occupations for adults and children with special needs and their families through a unique DAT program at IDC and a complementary therapy activity book for carryover into the home environment. Research has linked DST with the occupational therapy (OT) process (evaluation, treatment, and discharge) to improve participation in activities of daily living (ADL) in various different practice areas (Cot, 2015; Darrah & Bartlett, 1995; Mastos, Miller, Eliasson, & Imms, 2007). This theory can be used across existing and emerging areas of occupational therapy practice as a basis for screening and evaluating clients to determine the most effective, clientcentered treatments because of its top-down approach. Occupations are frequently described in terms of DST: the client, environment, and tasks or skills interacting to either support or hinder performance (Persson, Erlandsson, Eklund, & Iwarsson, 2001). Examples of limiting factors within the client include biomechanical, motivational, or neurological constraints (Darrah & Bartlett, 1995). Environmental constraints include physical, cultural, or social factors impacting performance of a task. Task limitations result from the nature of the task itself inhibiting performance (Darrah & Bartlett, 1995). Occupational therapy practitioners, regardless of the setting, evaluate these areas to identify the factor(s) that are specifically limiting performance and determine the system that is most available to change (Cot, 2015; Darrah & Bartlett, 1995). Once the area of change is determined, the OT practitioner should collaborate with the client and DOLPHIN-ASSISTED THERAPY 11 family to create client-centered goals for increased participation, performance, and satisfaction in daily occupations that target this area of change. The dynamic system theory fits well alongside an occupation-based approach because it allows the OT practitioner to center the OT process on the client performing a task within his or her environment (Cot, 2015; Darrah & Bartlett, 1995; Granados & Agis, 2011; Mastos et al., 2007; Persson et al., 2001). Methodology Screening and Evaluation at IDC. The screening and evaluation process at IDC initially begins with the family reaching out by phone, email, or social media to receive more information on the programs offered. Based on the information provided, the family chooses the program that would be the most beneficial for the child or family member with special needs. An application process is required for all new participants in the 5-day therapy program. The application is the main source of screening and evaluation for the therapists due to the unique nature of the program. The application addresses various dimensions of functioning that allows the therapists to paint a holistic picture of the child prior to beginning the program. In order to learn as much about the client as possible before starting the program, parents complete a questionnaire evaluating their child in the areas of physical, emotional, behavioral, social, and language skills using a 5-point Likert scale. The application provides basic information, which includes a description of how the not-for-profit was founded, specific information of the activities included in the 5-day therapy program, family and participant information, pricing, scholarship information, criteria for acceptance, and establishment of goals and expectations for the program. Criteria for acceptance includes completion of the application, recent doctors/therapy reports, and a ten minute DVD of the child interacting with others. DOLPHIN-ASSISTED THERAPY 12 Inclusion criteria for participants of the 5-day program includes 1) a doctors note which lists a medical diagnosis, (2) completion of all items in the criteria for acceptance listed in the application, and (3) the child must be able to actively participate in the sessions. Exclusion criteria includes children who are afraid of large animals or deep water, and those who will not allow strangers to hold them. Once all the criteria for acceptance is received and the family reserves a date, the therapy staff at IDC begins analyzing and evaluating the childs performance and participation in daily activities based on information provided in the application and video. The therapists at IDC then begin to plan the week of therapeutic activities prior to the child starting the program. Therapists also use the time when the families first arrive during orientation to screen and observe the child in terms of attention, verbalization, and behaviors. Screening and Evaluation for Therapy Activity Book. A needs assessment was completed by the therapy staff at IDC immediately after the therapy season ended in November 2017. The team discussed ideas and projects that would benefit most families who participate in 5-day therapy programs throughout the year. Ultimately, it was determined the greatest need at IDC was to increase carryover of the skills (fine motor, gross motor, speech, etc.) addressed during the 5-day DAT program into the home environment for children (Peplow & Carpenter, 2013). Repetition of skills needs to occur in order to maximize ADL independence. A cost-effective strategy to implement, complementary to traditional therapy, is a home-based program. Therapy staff and the writer (occupational therapy student) used literature and personal experience to collaboratively determine the book should address five domains of functional performance for children ages five to ten including: fine motor skills, gross motor skills, self-regulation, sensory integration, and speech-language skills (Novak & Berry, 2014; Wuang et al., 2013). Similar DOLPHIN-ASSISTED THERAPY 13 home programs that utilized a functional therapy approach for children with special needs have led to positive outcomes in the areas of motor abilities, functional performance, cognition, and developmental skills (Novak & Berry, 2014). Activities were designed to benefit children whose developmental age is between five and ten, which is the largest population of children who participate in the 5-day program. Research has shown parent dissatisfaction with home programs that focus on the childs impairment rather than family and child preferences (Peplow & Carpenter, 2013). Currently, the book is uniform for all children and its focus is to incorporate a holistic approach to the home program that is fun and engaging for all members of the family. Activities will be simple and cost-effective, aiming to increase the quality of the parent and child interaction, while also increasing functional performance in many of the listed domains (Peplow & Carpenter, 2013). Implementation Traditional occupational therapists in clinics or hospitals tend to adopt the expert and educator roles to provide the best occupation-based therapy for the individual client (Case-Smith & Holland, 2009). It is important to note that the role of an occupational therapist should change based on the service delivery model being utilized and the purpose of the services. Therefore, when designing a home program after therapeutic intervention it is important for the professional to adopt the role of a consultant. A consultant allows the occupational therapist to design and implement a family-centered, individualized, and engaging plan that is adapted to the needs and desires of the family (Case-Smith & Holland, 2009). The writer utilized leadership skills while acting alone to organize information obtained in the needs assessment to adopt the distinct role of a consultant. Leadership qualities continued during the planning and development phases of the home program for children to participate in after completion of the 5-day DAT program, DOLPHIN-ASSISTED THERAPY 14 where the writer independently designed an activity book to promote development of skills. Research has shown that one key issue with the implementation of a home program is the ability of the therapist to adopt the role of consultant when developing the home program (Pelow & Carpenter, 2013). The consultant role is the most effective and appropriate role when implementing a home program because of the nature of utilizing an indirect mode of therapeutic services. Adopting the consultant role when developing the therapy book allowed the designer to address many of the issues about relevance and adherence to home programs identified in the literature. Some issues identified in the literature were adopting the consultant role when designing a home program, incorporating a family-centered approach, the pressure and stress placed upon the family to complete the activities, a lack of supplies, and the designing of a function-based home program rather than dysfunction (Peplow & Carpenter, 2013). Based on results from the needs assessment, it was determined that in order to increase carryover of skills after completion of a DAT program, a home program needs to be implemented. The designer strived to incorporate many therapeutic domains into the therapy book with the goal of achieving desired therapeutic outcomes for the family (Novak & Berry, 2014). Volunteers from various disciplines, including occupational therapy, recreational therapy, and special education, reviewed the home program to ensure accuracy and reliability within each scope of practice. After the final reviews and edits were made, the book was finalized and copies were printed off on cardstock paper and bound together to increase durability. To encourage staff development and introduction to novel therapeutic activities, the three therapists at IDC who plan and implement daily classroom sessions for the 5-day programs participated in the review process of the therapy activity book. To promote an expansion of therapeutic interventions used in the classroom, therapy staff were each provided with a copy of DOLPHIN-ASSISTED THERAPY 15 the book to incorporate into the classroom sessions to introduce families to the nature of the activities. Therapy staff at IDC implemented several activities from the therapy book into their classroom sessions throughout the week with each family. The student designer trained therapy staff at IDC to obtain written consent for participation in the home program and follow-up survey, and introducing families to the directions and recommendations for completion of the home program. A convenience sample of the two families who participated in DAT at IDC during the first three weeks of therapy season from March 5, 2018 to March 23, 2018 was obtained. Families were included in the project if their child was between the ages of five and ten. Participation in the home program and follow-up survey was voluntary, and written consent for participation in the home program was obtained at the IDC facility upon completion of the 5-day therapy program. Written consent to participate in the home program and follow-up survey was obtained for two families. These families were given a therapy book along with a printout of instructions for the home program including suggested frequency and duration of the activities prior to leaving the facility. To avoid increased pressure and stress to complete the home program, it was suggested that the home program activities be completed two to three times a week, for a minimum of 30 minutes; however, this was not required (Peplow & Carpenter, 2013). Parent and family participation in the activities is an integral part for the process of rehabilitation for children with special needs; therefore family participation in the home program was highly recommended in the verbal and written instructions for the therapy book (Peplow & Carpenter, 2013). Due to time constraints and school requirements, families were emailed a follow up survey two weeks after completion of the DAT program in order to receive and analyze DOLPHIN-ASSISTED THERAPY 16 responses before the writer was completed with the capstone experience. The internally developed follow-up survey (Appendix A) was used as the outcome measure to assess of the effectiveness, relevance, adherence, and sustainability of the student occupational therapy home program after completion of the 5-day DAT program at IDC. Questions in the survey were designed to assess the pre-determined goals within the categories of effectiveness, relevance, adherence, and sustainability of the home program. The survey utilized a Likert scale ranging from one to five, with one meaning strongly disagree and five meaning strongly agree. The first goal was to create an effective home program that increased carryover and generalizability into the home setting. Additionally, the program needed to be relevant to the child participating, relative to age, diagnosis, and ability level. For the family to achieve the desired therapeutic benefits of the home program, participation in the recommended frequency and duration of the program should be achieved. The final question utilizing the Likert scale in the survey addresses sustainability by determining if the family has a plan for further completion of the home program after the two weeks. If parents plan to not continue the home program after the two weeks designated for measuring outcomes of the home program, space is provided for an explanation. Additionally, space is provided for families to make recommendations to improve the student occupational therapy designed home program. Results The purpose of the home program was to increase carryover of skills into the home setting for children who participate in the 5-day DAT therapy program at IDC. The student writer had additional goals for the program to incorporate cost-effective activities and improve the child-parent relationship (Peplow & Carpenter, 2013). The outcome measure was designed to address all aspects of the home program including: preparation to participate in the home DOLPHIN-ASSISTED THERAPY 17 program, accessibility of supplies, adherence to the recommended frequency and duration, carryover and generalizability of the program, continuation of the program after the follow-up time frame, and general suggestions for improvement (Novak & Berry, 2014; Peplow & Carpenter, 2013; Wuang et al., 2013). Outcome measurement via the follow-up survey was obtained from two clients (N = 2). Survey results were compared to pre-established goals to assess the home program in four domains 1) effectiveness 2) relevance 3) adherence and 4) sustainability. In terms of effectiveness, both families reported the home program helped increase carryover of skills addressed during the DAT program. Additionally, the families reported the home program was relevant to the age, diagnosis, and ability level of their child and they understood how the activities promote skill development and carryover into the home, school, and community settings. One family participated in the home program above the recommended duration and frequency. The other family did not participate in the recommended duration and frequency due to a lack of time. Despite a lack of time to complete the home program, the family reported agree with the statement regarding the recommended duration and frequency being fair and easily attainable. Both families reported having a plan to continue the home program despite completion of the student DCE project. Continuous quality improvement is a business management process that encourages healthcare businesses to continually ask questions of how to improve the quality of care and services provided to clients (Edwards, 2008). To ensure continuous quality improvement standards were implemented, outcome survey analysis was conducted upon after return of the follow-up surveys. The student writer conducted analysis of outcomes through coding of the responses. Neither of the families reported any recommendations for improvement on question DOLPHIN-ASSISTED THERAPY 18 16 on the follow-up survey (Appendix A). Familial involvement and participation in the home program plays an integral part to introduce principles of quality improvement after completion of the project; therefore, family recommendations for quality improvement will continue to be a significant factor shaping the future of the activity book. Discontinuation Data collection was discontinued on April 6, 2018, three weeks prior to the completion of the student project to allow for analysis of outcomes; measures were implemented to ensure the identified need will still be addressed in the future. The student writer plans to continue implementing the home program for the clients who attend a 5-day DAT program at IDC. Ongoing analysis of outcomes will continue even after completion of the student project. Therapy staff at IDC have also agreed to provide recommendations to increase effectiveness and sustainability of the home program after completion of the project, while also incorporating activities from the activity book into the classroom sessions. This promotes the importance of fun, client-centered activities to increase carryover and generalizability into the home setting. To ensure the identified need will still be addressed, future families will be informed that the activity book is available at no cost. The recommendation for weekly frequency and duration will be included in the book, as well as the follow-up survey. The family can mail the finished followup survey to IDC or contact the writer to obtain an online copy of the survey. The writer will continue to conduct analysis of outcomes after completion of the project to modify the home program as suggested improvements are made. By developing this type of ongoing program based on principles of continuous quality improvement, health professionals, including OT practitioners, can respond to societys changing needs. Initially, a needs assessment was completed to identify the current need of the population DOLPHIN-ASSISTED THERAPY 19 of families at IDC. The student writer and other therapy staff members at IDC can respond to the changing need of the population by altering the original design of the home program to promote sustainability and effectiveness. Quality improvement principles will be implemented by continuously adapting the therapy activity book based on the need of this population as a whole or the individualized needs and goals identified by the family. Conclusion Implementation of a home program after participation in DAT can help to increase carryover of skills into the home, school, and community settings. Due to a large population of clients not appropriate for the activity book designed for the purpose of this DCE project, it is recommended that an occupational therapist design multiple books for the additional populations served at Island Dolphin Care. Along with the use of multiple home programs, the facility should utilize an outcome measure to determine effectiveness of the home programs. Additionally, through collaboration between the occupational therapy student, therapy staff at IDC, and the founders of the facility about the potential role of occupational therapy in this non-traditional practice setting, it was determined that hiring an occupational therapist would be beneficial for the not-for-profit organization and its clients. Island Dolphin Care staff determined that having an occupational therapist on staff would provide a unique approach to both the classroom and water sessions included in the DAT programs offered at IDC. Island Dolphin Care decided to hire the student occupational therapy writer to join the interdisciplinary DAT therapy team after state and national licensing is complete. Overall Learning This Doctoral Capstone Experience (DCE) and Project has been very beneficial for me both personally and professionally. I have improved my communication skills, confidence, DOLPHIN-ASSISTED THERAPY 20 leadership skills, knowledge, professionalism, and ability to generalize occupational therapy practice to a non-traditional setting. Communication is a very important aspect of being in a healthcare field and this DCE has provided me with an amazing opportunity to improve my written, oral, and nonverbal communication skills. When designing the activity book as part of my DCE project, it was crucial to have excellent written communication skills for the parents to understand the purpose, supplies, directions, and ways to grade the activities to promote success for all children participating. I have worked on improving my oral and nonverbal communication skills every day at my DCE site. Working with families who have fragile, young children, veterans with Post-Traumatic Stress Disorder, and others with various health conditions it is important to speak and act with empathy and sincerity to not provoke any negative thoughts or feelings. When talking with these families, especially the veterans, it has been extremely important to show interest and attention when listening to them share their story despite any other task I should be completing. There were several times when I had a lot of work to finish before leaving for the day, but I had to realize that patient care and sincerity was more important than anything else I should be doing. These people benefit so much from the programs we provide for them and for a lot of them it is difficult to build relationships because of the constant change and uncertainty, so developing sincere oral and nonverbal communication skills helps to promote a strong client-therapist relationship. Generalizing my skills learned throughout OT school to this non-traditional practice setting has helped develop and improve a lot of skills including confidence, professionalism, and knowledge. Because of this experience, I feel more confident in my abilities to be an occupational therapist in a traditional setting. I have had the opportunity to help the therapists at my site develop activities that incorporate the goals the family identified. Most of the activities DOLPHIN-ASSISTED THERAPY 21 done at the site are art projects; the therapists have asked for my help to incorporate other aspects to promote the therapeutic goals. My ability to plan client-centered interventions and incorporate OT principles in this non-traditional practice setting has provided me with increased confidence in my ability to plan interventions in traditional practice settings. I have been introduced to many fun activities that have been done in the classroom portion of the DAT program that could also be used for pediatric OT intervention sessions. These activities promote development and address client-centered goals, but are fun and often times the child does not even realize the activity is incorporating a therapeutic goal. Being encompassed in interdisciplinary practice on a daily basis has helped me understand the benefits of collaborating and using other professionals as a resource to be a great therapist. I have been introduced to overlap between professions but then also uniqueness between the professions as well. I have been able to provide advice to parents to help with problems related to sensory integration on multiple occasions. I utilized these opportunities to improve my leadership skills by taking the initiative to give advice when the other therapists were not able to. I also had to use leadership skills when planning and implementing aspects of the home program. Besides the needs assessment being complete for me, everything else I completed independently including the activity book and consent forms. Additionally, I trained the therapy staff to give information about participation in the home program and how to obtain written consent. During my first eight weeks of my DCE, I worked on the activity book, but I also was involved in marketing of our services to increase awareness and advocate for the services that Island Dolphin Care provides. Collaboratively along with the office administrator, we developed flyers and ads to promote fundraisers and events to the community including the addition of DOLPHIN-ASSISTED THERAPY 22 weekend therapy programs, yoga with dolphins, and a Valentines Day fundraiser to raise money and awareness for Island Dolphin Care. These skills have helped to increase my professional development and knowledge of working for a non-for-profit business. Since I have accepted a therapist position at this facility, these skills I have learned will help me in future practice to advocate for the services our facility provides to increase caseload. My display of interest in this area has provided me with another job when I start working for this facility; I will help with marketing and fundraising in the future at Island Dolphin Care. Overall, from this DCE I have learned many valuable skills that will not only benefit my future work at Island Dolphin Care but also traditional occupational therapy services I will provide in the future. I have learned how to utilize appropriate communication with clients and the importance of effective written, oral, and nonverbal communication when building relationships with clients, families, coworkers, and the community. Communication and professionalism are the crucial factors to success in any healthcare profession. I cannot wait to see what the future hold for my professional career, but I will be a better practitioner and person as a result of this DCE. DOLPHIN-ASSISTED THERAPY 23 References Akins, R. S., Krakowiak, P., Angkustsiri, K., Hertz-Picciotto, I., & Hansen, R. L. (2014). Utilization patterns of conventional and complementary/alternative treatments in children with autism spectrum disorders and developmental disabilities in a population-based study. Journal of Developmental and Behavioral Pediatrics, 35(1), 1-10. American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. Breitenbach, E., Stumpf, E., Fersen, L., & Ebert, H. (2009). Dolphin-assisted therapy: Changes in interaction and communication between children with severe disabilities and their caregivers. Anthrozos, 22(3), 277-289. Case-Smith, J., & Holland, T. (2009). Making decisions about service delivery in early childhood programs. Language, Speech, and Hearing in Schools, 40(1). 416-423. Centers for Disease Control and Prevention. (2015, July 9). Developmental Disabilities. Retrieved January 27, 2018 from https://www.cdc.gov/ncbddd/developmentaldisabilities/about.html Cot, C. A. (2015). A dynamic systems theory model of visual perception development. Journal of Occupational Therapy, Schools, & Early Intervention, 8(2), 157-169. Darrah, J., & Bartlett, D. (1995). Dynamic systems theory and management of children with cerebral palsy: Unresolved issues. Infants & Young Children: An Interdisciplinary Journal of Early Childhood Intervention, 8(1), 52-59. Dilts, R., Trompisch, N., & Bergquist, T. M. (2011). Dolphin-assisted therapy for children with special needs: A pilot study. Journal of Creativity in Mental Health, 6(1), 56-68. DOLPHIN-ASSISTED THERAPY 24 Edwards, P. J. (2008). Maximizing your investment in EHR: Utilizing EHRs to inform continuous quality improvement. Journal of Healthcare Information Management, 22(1), 32-37. Granados, A. C., & Ags, I. F. (2011). Why children with special needs feel better with hippotherapy sessions: A conceptual review. The Journal of Alternative and Complementary Medicine, 17(3), 191-197. Griffioen, R. E., & Enders-Slegers, M. J. (2014). The effect of dolphin-assisted therapy on the cognitive and social development of children with down-syndrome. Anthrozos, 27(4), 569-580. doi: 10.2752/089279314X14072268687961580 Island Dolphin Care. (2017). Island Dolphin Care. Retrieved on 22 January, 2018 from http://www.islanddolphincare.org/about-2/ Kohn, N., & Oerter, R. (2013). Dolphin assisted therapy works: Scientific findings from Eilat and Florida. International Journal of Clinical Psychology, 1(1), 1-16. Kreivinien, B., & Kleiva, . (2017). Subjective approach towards the welfare understanding in the dolphin assisted therapy: Experiences of families in pilot research. Social Welfare Interdisciplinary Approach, 7(1), 141-157. Mastos, M., Miller, K., Eliasson, A. C., & Imms, C. (2007). Goal-directed training: Linking theories of treatment to clinical practice for improved functional activities in daily life. Clinical Rehabilitation, 21(1), 47-55. Nathanson, D. E. (1998). Long-term effectiveness of dolphin-assisted therapy for children with severe disabilities. Anthrozos, 11(1), 22-32. DOLPHIN-ASSISTED THERAPY 25 Nathanson, D. E., de Castro, D., Friend, H., & McMahon, M. (1997). Effectiveness of short-term dolphin-assisted therapy for children with severe disabilities. Anthrozos, 10(2-3), 90100. Doi: 10.2752/089279397787001166 Novak, I., & Berry, J. (2014). Home program intervention effectiveness evidence. Physical & Occupational Therapy in Pediatrics, 34(4), 384-389. Peck-Murray, J. A. (2015). Utilizing everyday items in play to facilitate hand therapy for pediatric patients. Journal of Hand Therapy, 28(1), 228-232 Peplow, U. C., & Carpenter, C. (2013). Perceptions of parents of children with cerebral palsy about the relevance of, and adherence to, exercise programs: A qualitative study. Physical & Occupational Therapy in Pediatrics, 33(3), 285-299. Persson, D., Erlandsson, L. K., Eklund, M., & Iwarsson, S. (2001). Value dimensions, meaning, and complexity in human occupation: A tentative structure for analysis. Scandinavian Journal of Occupational Therapy, 8(1), 7-18. Skelton, H., & Rosenbaum, P. (2010). Disability and child development: Integrating the concepts. CanChild. Retrieved from https://www.canchild.ca/en/resources/35-disabilityand-child-development-integrating-the-concepts Stumpf, E., & Breitenbach, E. (2014). Dolphin-assisted therapy with parental involvement for children with severe disabilities: Further evidence for a family-centered theory for effectiveness. Anthrozos, 27(1), 95-109. Doi: 2752/17530371413837396326495 The World Bank. (2017, September 20). Disability inclusion. Retrieved January 26, 2018 from http://www.worldbank.org/en/topic/disability Whitford, M. (2017). A slice of heaven on earth. Pest Management Professional, 85(10), 174175. DOLPHIN-ASSISTED THERAPY 26 Wuang, Y. P., Ho, G. S., & Su, C. Y. (2013). Occupational therapy home program for children with intellectual disabilities: A randomized control trial. Research in Developmental Disabilities, 34(1), 528-537. DOLPHIN-ASSISTED THERAPY 27 Appendix A A follow-up survey to assess effectiveness, relevance, adherence, and sustainability of a home program after completion of the 5-day dolphin-assisted therapy program. Directions: Please complete the form to the best of your ability. Bold or highlight the most appropriate numeric response to each statement. If you do not feel comfortable answering a statement, then skip it and move on to the next. Strongly Disagree 1. Staff or interns adequately prepared my family with instructions for completion of the home program and the follow-up survey. 2. The supplies needed were costfriendly. 3. The directions for the activities were simple and easy to understand. 4. The writer included ways to upgrade and downgrade the activities. This information was useful and easy to understand. 5. The recommended frequency and duration per week was fair and easy attainable with other daily life commitments. 6. My child participated in the recommended frequency and duration (2-3x/wk) of the home program. 7. My child participated in the home program more than the recommended frequency and duration. 8. The activities easily incorporated the whole family. 9. At least one family member was active in participating in the desired activity with the child each time. Disagree Neutral Agree Strongly Agree 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 DOLPHIN-ASSISTED THERAPY 10. The activities were fun and engaging for all members of the family who participated. 11. I understand how these activities can help promote my childs development and increase carryover of skills addressed in the dolphinassisted therapy program. 12. I believe that these activities have helped with carryover and generalization of the skills addressed in the dolphin-assisted therapy program into the home, school, or community setting. 13. I believe that if I were to continue this home program with my child, these activities will help promote carryover and generalization of the skills addressed in the dolphin-assisted therapy program into the home, school, or community setting. 14. I will continue to complete this recommended home program with my child. If not, please explain why below. 28 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 15. If you do not plan to continue this home program with your child, please give an explanation. _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ 16. Recommendations to improve the home program. _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________  ...

... Running head: PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT Pediatric Cortical Visual Impairment: A Doctoral Capstone Experience Amanda Abbott May, 2018 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Alison Nichols, OTR, OTD 1 PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT A Capstone Project Entitled Pediatric Cortical Visual Impairment: A Doctoral Capstone Experience Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Amanda Abbott 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 PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT Abstract Cortical visual impairment (CVI) is the leading bilateral visual impairment in children under the age of 18. CVI is caused by an insult to the posterior visual pathway resulting in difficulties processing what the eye is seeing. Children receive a diagnosis of CVI through recommendations of an ophthalmologist or optometrist and results of a CVI Range assessment, often administered by an occupational therapist. Despite CVI being the leading bilateral visual impairment in children, there are few occupational therapists trained on general CVI knowledge and/or the CVI Range. The aims of this paper are (1) to describe how occupational therapy can provide a meaningful service to children with CVI and (2) to describe the process of creating training guidelines for the CVI Range. 3 PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 4 Pediatric Cortical Visual Impairment and Occupational Therapy Cortical visual impairment (CVI) is the leading cause of visual impairment for children in developing countries (Matsuba & Jan, 2006). As medical advances and perinatal care continue to increase the number of surviving babies, the number of children with CVI will continue to increase. Cortical visual impairment can inhibit performance and participation in many occupations, including activities of daily living, and significantly affects daily life for a child and his/her family. For children, this could mean increased difficulties in activities at school, during play, or even self-care tasks, such as dressing or brushing teeth (American Occupational Therapy Association, 2014). Occupational therapists can serve this population by adapting the environment to maximize and further develop residual vision for a better quality of life for children with CVI. Literature Review Cortical visual impairment is most commonly caused by perinatal hypoxic ischemia (Matsuba & Jan, 2006). Damages to the posterior pathways of the brain during birth or trauma inhibit visual processing, making it difficult for children with CVI to process visual input that is too complex (Roman-Lantzy & Lantzy, 2010). While children with CVI may initially present as blind, they actually retain ranging amounts of residual vision, which can be determined through interdisciplinary assessments and evaluations typically administered by an occupational therapist and ophthalmologist. Occupational therapists can have a particularly significant role in the lives of children with CVI by not only training these children on adaptive techniques to improve participation in daily activities, but also by implementing strategies and tools to increase residual vision that are specifically catered to a childs unique visual processing needs. There has been limited recent research on pediatric cortical visual impairment; however, researchers have found and suggested methods for evaluating and intervening with this population in the past. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 5 It is recommended that evaluation of cortical visual impairment in children include the CVI Range designed by Christine Roman-Lantzy (2007). This assessment helps to determine what level of vision the child retains to help guide intervention. It also determines what phase the child falls into in regards to their visual function. Phase I (CVI Range 0-3) corresponds to building visual behavior; Phase II (CVI Ranges 4-7) includes integration of vision with function, and Phase III (CVI Ranges 8-10) categorizes resolution of remaining CVI characteristics (Roman-Lantzy, 2007). Identifying what phase of visual function a child has helps to guide intervention and treatment planning and can be used to quantitatively display progress of visual function. Further explanation of this assessment will occur in the methods section of this paper. Groenveld (1990) suggested an individualized approach for each child by spending generous time in observation during evaluation to understand the childs unique perspective. While this literature is outdated, the methodology is still relevant in CVI treatment today and highlights the need for more current evidence-based research in this area. Specific interventions for children with cortical visual impairment vary depending on the childs unique visual capabilities. A study by Malkowics, Myers and Leisman (2006) educated parents on an intensive visual rehabilitation program including light reflex, a checkerboard environment for outline perception, locating light for outline perception, and additional interventions for developing the ability to see detail within a configuration. Parents used these interventions with their child multiple times per day for an average of 6.9 months. Results of this study included 76% of participants improving vision from CVI range score of 3 or below to CVI range score of 5 or above (Malkowics, Myers & Leisman, 2006). This study confirmed that vision could improve for children with CVI when implementing strategies that encourage use of their residual vision. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 6 Roman-Lantzy and Lantzy (2010) performed a retrospective review of prior patients with CVI who had highly motivated parents, revealing that 95% of these children improved from Phase I to Phase III over the course of 3.7 years with individualized treatment. The authors suggest that the parents of these participants were highly motivated because they self-selected to partake in this study. The results of this study indicated the potential for improvement in visual function with specialized intervention and further implied the significance of caregivers involvement in the development of visual function for children with CVI. Since residual vision can vary so greatly amongst individuals with CVI, recommendations for intervention tend to be broad and unspecified. Ospina (2009) suggested that decreasing visual stimulation through presentation of simple visual environments as opposed to crowded visual environments could potentially enhance vision. Ospina further recommended incorporating contrasting colors and varying sensory input such as language and touch as cues to optimize residual vision. McKillop and Dutton (2008) suggested minimizing sensory distractions during intervention to encourage use of the visual sensory system. These researchers examined the literature to suggest management strategies for children with CVI in regards to specific problems, such as colour vision and contrast sensitivity impairment, impaired tracking, identifying someone in a group, difficulty reading facial expressions and more (McKillop & Dutton, 2008, p. 5). These management strategies can be used to further improve participation in daily functional activities. When working with children with CVI, it is important to consider the basics of pediatric care, such as using a family-centered approach. Frequently, pediatric CVI intervention includes parent education of adaptive techniques and visual rehabilitation strategies. Fingerhut et al. (2013) summarized three basic principles of family-centered practice in pediatric care found in the literature. The first principle is that families have spent the most time with the child in their PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 7 natural home setting, so they must be considered critical partners of the treatment team. Next, the therapist must identify the individual characteristics and desires of the family as a unit and design intervention to be flexible and realistic for that specific family. The third principle is that the goal of intervention should be to increase and support family functioning to maximize quality of life for the whole family (Fingerhut et. al., 2013). The concept of family-centered practice aligns closely with the ideals from the Model of Human Occupation (MOHO). The Model of Human Occupation provides therapists with a systematic approach to understanding and working with the values, needs, habits, and skills of the family and child within their environments (Catherine & Bhat, 2017, p. 26). Using these concepts, therapists can adapt the environment to improve the participants volition and maximize performance in a meaningful occupation (Cole & Tufano, 2008; Kielhofner & Burke, 1980). For a family and child with CVI, these guidelines can help a therapist maintain a clientand family-centered approach to treatment while incorporating visual activities. Eliasson (2005) suggests the use of the MOHO to create intervention plans in pediatrics because the model is influenced by client-centered practice. The MOHO proposes that volition, or motivation, is the driving force behind participation (Keilhofner & Burke, 1980). When applying this idea to a child with CVI, understanding what motivates the child is crucial in terms of increasing visual participation. Children with CVI process objects that they are familiar with more easily than they process new items. This relates to the habits of the child and family, as objects that are familiar to the child are often well received because they are integrated into their specific daily habits and routines. With the MOHO as a guide, the therapist can remain family-centered by reflecting on the values and habits of the family to develop motivating, unique goals, and interventions to maximize visual participation and performance for children with CVI. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 8 While the gap in the literature for CVI intervention is evident, it remains important to reflect on CVI guidelines and basic pediatric principles when working with children with CVI and their families. Researchers have confirmed that visual function can improve with specialized intervention for children with CVI (Roman-Lantzy & Lantzy, 2010). While future research is required to maintain evidence-based practice within this area, occupational therapists can use the Model of Human Occupational to guide specialized treatment and intervention planning that is family-centered to increase independence and quality of life for children with CVI and their families. Evaluation of Cortical Visual Impairment Using the CVI Range Children with a diagnosis or suspected diagnosis of CVI typically receive a referral for an occupational therapy evaluation using the CVI Range. The CVI Range was created by Christine Roman-Lantzy and categorizes the childs functional visual level into a range of scores (RomanLantzy, 2007). This score helps to guide treatment, establish goals, and track quantitative progress. There are ten characteristics of the CVI Range that an occupational therapist assesses to determine the childs functional use of residual vision. Each characteristic is scored using a point system from zero to one in .25 increments, and the scores are combined for a total score out of ten. A score of ten indicates near-typical visual function and a score of zero indicates no emerging visual function. This score is used to indicate a range for a second score, where the child is again scored on ten visual behaviors. The two scores are averaged for a specific score that the child receives, which is categorized into one of three phases of functional vision. Scores from 0-3 are in phase one, scores from 4-7 are in phase two, and scores from 8-10 are in phase three. Research has indicated that the CVI Range is a reliable instrument for evaluating children with cortical visual impairment. In one study, researchers assessed for reliability of the CVI PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 9 Range on 104 children. Researchers found the inter-rater reliability coefficient to be .98, the testretest reliability to be .99, and the alpha to be .96 (Newcomb, 2010). Characteristics in the CVI Range The first characteristic is color preference. For this characteristic, the therapist is testing to see if the child has the ability to process all colors. This is tested by offering single-colored items one at a time, and evaluating if the child is able to attend to, fixate, and track that color. The therapist may notice extreme differences, such as the child only being able to acknowledge items that are red, or subtle differences, such as the child taking five seconds longer to notice items that are blue. For a child with lower visual function, it may be necessary to simplify the background to black for the child to attend to objects of any color. Researchers found that when comparing attention of a gray, non-moving stimulus to a colored, non-moving stimulus, children with CVI spent significantly more time looking at the colored stimulus than the gray stimulus (Cohen-Maitre & Haerich, 2005). The second characteristic is need for movement. This can be defined as moving objects and objects with reflective properties. Cohen-Maitre and Haerich (2005) found that children with CVI attended to moving colored objects with significantly longer total fixation times as compared to non-moving colored objects. This is often tested in evaluation by observing a childs ability to attend to a plain, single-colored object and comparing this to their ability to attend to a reflective, same-colored object such as a pompom. Visual latency is the next characteristic assessed during the CVI Range. This is the amount of time it takes a child to notice an item when it is placed in front of them. A child who can visually attend to an object within two to three seconds might score a .75. Another child may attend to that same object in 15 seconds or more, maybe only scoring a .25, The therapist should compare this between a variety of items and toys, including evaluating with an object the child is PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 10 familiar with and with an object that is new to the child. There is limited evidence on this characteristic in isolation from the other CVI characteristics. The next characteristic of the CVI Range is preferred visual field. This is measured by offering a preferred, familiar toy in all visual fields and observing if the child is able to track in all fields, has a latent response in a certain field, or if the child will acknowledge an object in all fields. A child with a preferred visual field may be able to attend to, look and reach, and track when objects are presented in his/her preferred field like a child with typical vision, but might ignore everything to his/her in a different field. It is most common for children with CVI in the lower phases to have preferred peripheral field vision use, with increased difficulties in the central and lower visual fields. Among a group of 38 children with CVI, researchers found deficits in visual fields for all participants that could be tested (Groenendaal & van Hof-van, 1992). Jan and Groenveld (1993) also found that preferences in visual fields are present for the majority of children with CVI. While these statistics are outdated, they still indicate the relevance of assessing visual fields for children with CVI today to determine their individual strengths and weaknesses. This information can help to further develop specialized interventions for each child. The fifth characteristic is difficulties with visual complexity. Roman-Lantzy divides complexity into four categories. The first category refers to complexity of objects and requires the therapist to score the childs ability to attend to and interact with objects of single colors and simple shapes versus a multicolored object that contains various shapes. The second category is called array, which refers to the childs ability to attend to objects against crowded backgrounds. The third category requires the scorer to assess the childs visual attention with competing sensory input such as distracting noises. Because CVI is a processing disorder, some children find it difficult or nearly impossible to process more than one sensory input at the same time. The PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 11 fourth category is for the childs ability to attend to faces. Visual complexity, like the rest of the CVI characteristics, can improve with intervention, maturation, and development. However, this tends to be a continual difficulty for individuals with CVI, even as they age and visual function advances. This is evidenced by residual deficits with only the most complex of visual environments during periods of exhaustion for high functioning children with CVI (RomanLantzy, 2007). Light gazing is the next characteristic assessed within this tool. This is defined as fixations on primary sources of light. This characteristic tends to be more relevant in children with lower visual function and can be observed or verbally reported by the caregiver during evaluation. It is typically driven by the childs ability to process the simplest form of visual stimulation or an attempt to avoid looking at a more complex visual stimulation (Roman-Lantzy, 2007). The next item is difficulty with distance viewing. This item is scored by the childs ability to see when items are held 12 inches, 3 feet, 10 feet, and 20 feet from his/her face. This characteristic is closely related to complexity, in that some children will hold items very close to their face to reduce the complexity of the background and environment and remove any unnecessary visual information (Roman-Lantzy, 2007). During assessment of distance vision, the therapist should use a simple environment with reduced clutter to evaluate the childs visual attention. The eighth characteristic of the CVI Range is reflexes. It is common for children with CVI to demonstrate atypical responses when they are touched on the bridge of their nose and when they have something moving quickly towards their face. These reflexes are called visual blink response and visual threat response (Roman-Lantzy, 2007). A normal response to these PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 12 stimulations would be for the child to blink. Therapists should assess these reflexes while the child is distracted by a toy or separate activity. The next characteristic is difficulty with visual novelty. Children with CVI often have fixations on objects that are familiar to them and avoid visually engaging with objects that are new. This is because novel or new items are harder for them to process. The therapist should use a toy or item brought in by the parent that the child interacts with on a daily basis, and compare the childs visual response to that of a brand new toy (Roman-Lantzy, 2007). Higher- functioning children may respond in the same manner for both objects, while children that are in the middle phase might look at the new item, look away for a few seconds to process, and then look back at the toy again. Lower-functioning children with CVI may not even acknowledge the new object at all. The final characteristic is absence of visually guided reach. Typically developing infants develop the ability to reach at a very young age. Children with CVI often continue to have difficulties associating look and reach for several years. Therapists should test this skill using an item that the child is familiar with or can easily attend to, then allow the child up to a full minute to process and interpret the object and attempt to reach it. The therapist will score the child based on the time taken for the child to see the item and then attempt to reach or swat towards it (Roman-Lantzy, 2007). The CVI Range is a tool that can significantly affect the occupational performance of children with CVI as it can be used as a guide for occupational therapists to identify the visual skills of these children. Once visual skills have been identified, occupational therapists can determine the gaps in these skills and implement adaptations to maximize visual participation and independence. These adaptations can help a child with CVI become independent in school, activities of daily living, and other meaningful occupations of their choice. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 13 Implementation This DCE included implementation of a document to standardize the tool kit and administration of the CVI Range. The need for this document was identified by two licensed occupational therapists with specialties in cortical visual impairment. As the number of children being referred to occupational therapy (OT) for evaluation of the CVI Range has increased, the need for therapists trained in the CVI Range has also grown. Since the CVI Range is a nonstandardized assessment and this large childrens hospital had almost 20 locations where OT evaluations can occur, it was common for differing techniques and tools to lead to inconsistent results. The use of a standardized manuscript and tool kit for this hospital helped to further train therapists on the CVI Range and increased consistency across locations. Implementation of this DCE occurred in two steps. First, all outpatient locations with therapists interested in learning the CVI Range received a copy of the suggested tool kit. This tool kit included lists of toys, objects, and adaptive material for all phases of CVI so that during evaluation, children were observed with the same materials. Using this list, the participating sites gathered, purchased, and combined tools to create a CVI Tool Kit. Second, participating therapists read through the CVI Range Standardization document (see Appendix A for full standardization document) in addition to the scoring manual by Christine Roman-Lantzy (2007). These therapists had opportunities to observe a mentor on at least two CVI Range evaluations for a child with high visual function and for a child with low visual function. These opportunities allowed them to apply suggestions from the standardization document in real-time and observe typical CVI function during evaluation. The therapists then used the CVI Range Standardization document to further guide their evaluations upon returning to their site or setting. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 14 Follow-up continued to occur post-DCE to examine the success, benefits, and needs of the CVI Range Standardization and Tool Kit. This document was open to change and updates throughout its implementation. Implementation solely occurred within this childrens hospital. Service Provision Completion of this DCE project required strong leadership skills and interprofessional relationships. I demonstrated leadership through self-direction, initiation of contact between therapists, ophthalmologists, teachers of the visually impaired, and physical therapists, as well as effective communication to maintain these relationships and build rapport. Although physical therapists do not specifically evaluate or treat for cortical visual impairment, understanding CVI strategies is still crucial for maximizing performance and participation in any activity for a child with CVI. Each of these professions generally used a direct model of service provision, providing one-to-one care. This model of service provision led to the need for interprofessional collaboration during the creation of this CVI Range Standardization document in order to gather and combine pertinent CVI strategies and suggestions for a holistic document. It was important to utilize effective communication to build these relationships as this project was developed and implemented. Information gathered through these relationships was used to develop a comprehensive and inclusive CVI Range Standardization document and Tool Kit. I received constructive feedback from the leading occupational therapy researcher at this site throughout this process to improve the document. Leadership Skills Leadership skills were incorporated to maintain relationships among these professions as the document and tool kit were prepared for implementation. I was required to demonstrate leadership, advanced knowledge, and confidence in CVI clinical skills in order to develop trust with various professionals including occupational therapists. I also demonstrated leadership PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 15 through the self-direction of this project in identifying gaps in the CVI Range through observation, development of the standardization document, and time management of completing this project among many other responsibilities throughout this doctoral capstone experience. Discontinuation and Outcome Phase Once the CVI Range Standardization document was drafted, reviewed, and completed, two therapists with extensive CVI experience were trained and educated on the use of this document. These leading therapists committed to continual sustainment of the document once I leave the site and can no longer manage this training tool. These therapists will be responsible for answering questions and training new therapists on use of the tool. This document will continue to serve as a learning guide for therapists and outpatient sites within this hospital for increased consistency of administration of the CVI Range. During the time of this doctoral capstone experience, one new occupational therapist was trained on the CVI Range using the CVI Range Standardization guidelines. This therapist created a new tool kit at her outpatient site following the instructions within the document. Future occupational therapists within this hospital center will use this standardization document to learn the CVI Range should they elect to acquire these skills. The needs of society were met in several ways by this project. Primarily, consistent evaluations and interpretation of the CVI Range will improve as administration becomes similar across sites. This will allow for an easier training method of the CVI Range for new, interested therapists within this hospital, which will hopefully increase the number of trained therapists within this field. This meets the needs of society as cortical visual impairment is the leading cause of bilateral visual impairment in children under the age of 18, yet there are very few occupational therapists trained to treat children with this diagnosis. This problem has led to increased wait times for these children to receive evaluations. Increased training through PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 16 improved access to training for occupational therapists within this hospital should help to improve general CVI education and knowledge as more therapists provide treatment to more families and maximize independence for children with CVI. To further meet the educational needs of CVI knowledge, a CVI Knowing Note was created for this site as a handout to parents upon receiving a CVI diagnosis for their child. This document continues to meet the needs of society along with this project as it expands the knowledge and access to education on CVI for patients and their families. This Knowing Note is found in Appendix B and will be continuously updated by the same leading CVI occupational therapist within this hospital. As I will only remain at this site for a few weeks beyond the completion of this CVI Standardization document, it is difficult to anticipate continuous quality improvement needs that may arise. In order to combat the likely needs of CQI, a holistic, interprofessional approach has been taken to improve this document. After completing the final draft, this document was submitted to the two leading occupational therapists with CVI specialties within this hospital. Edits and input were included to the final draft to be sent off to an ophthalmologist to review before officially releasing this document to therapy staff. This approach allowed for a wellrounded collaboration of the document to be as inclusive as possible. Should needs for quality improvement arise in the future, the leading occupational therapist with CVI specialties at this site will manage the document. This will help for this project to remain up-to-date and in service for therapists at this site. Overall Learning This doctoral capstone experience provided opportunities for learning research skills, specialty pediatric skills, interprofessional and patient communication in-person, in writing and virtually, as well as leadership skills. I developed advanced research skills by studying the PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 17 literature on cortical visual impairment and participating in several CVI and occupational therapy research studies, including a grant-funded telehealth study. Through this study, I learned clinical and communication skills using a virtual format while implementing the latest evidence-based practice in occupational therapy for children with CVI. I also had the opportunity to learn specialty pediatric skills in cortical visual impairment. I learned how to adapt the environment, modify tasks, and assess children for their functional vision. In this process, I learned documentation of the CVI Range and how to effectively communicate a childs visual performance to parents and clinicians. I frequently communicated through e-mail to parents of patients on ideas for adaptive toys, visual activities, and school strategies to try on their own or at home to maximize their childs independence. Interprofessionally and amongst experienced occupational therapists, I had a unique opportunity to develop professionally with my communication skills. After completing my initial literature review and observing 12-15 hours of CVI evaluations with my direct supervisor, I had gained enough preliminary knowledge to start asking questions and working more independently on this project. This challenged me to seek out input from other occupational therapists with CVI experience, other occupational and physical therapists with no CVI experience that had children with CVI on their current caseload, an ophthalmologist, teachers for the visually impaired (TVI), and community and mobility specialists. This holistic perspective provided me with more knowledge for the CVI Range Standardization document than I could have found in literature, and also further encouraged my ability to work with professionals from various areas with varying specialties. The project described in this paper specifically highlights my detailed learning experience of the CVI Range, and the importance of administering assessments in a standardized fashion. I had the opportunity to advocate for the pediatric cortical visual impairment population PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 18 as I created this document and communicated interprofessionally to increase CVI knowledge within the therapy department. The experiences I had and the skills I gained during this doctoral capstone experience will carry over into my future career, regardless of whether or not I serve a pediatric population. In my future practice, I will reflect on these sixteen weeks as a reminder to implement evidencebased practice, utilize various forms of communication to best educate and inform patients, families, and other disciplines, and incorporate holistic strategies to increase quality of life for individuals of all ages and diagnoses. Overall, I learned about the many roles an occupational therapist has in children in their families lives as an advocate, therapist and researcher. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 19 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. Catherine, C., & Bhat, V. (2017). Family centered developmental care as early intervention for children with special needs. International Educational Applied Scientific Research Journal, 2(12), 26-28. Cohen-Maitre, S. A., & Haerich, P. (2005). Visual attention to movement and color in children with cortical visual impairment. Journal of Visual Impairment and Blindness, 99(7), 389402 Cole, M., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Eliasson, A. (2005). Improving the use of hands in daily activities. Physical and Occupational Therapy in Pediatrics, 25(3), 37-60. doi:10.1080/j006v25n03_04 Fingerhut, P. E., Piro, J., Sutton, A., Campbell, R., Lewis, C., Lawji, D., & Martinez, N. (2013). Family-centered principles implemented in home-based, clinic-based, and school-based pediatric settings. American Journal of Occupational Therapy, 67, 228-235. Groenendaal, F., & van Hof-van Duin, J. (1992). Visual deficits and improvements in children after perinatal hypoxia. Journal of Visual Impairment and Blindness, 86, 215-218. Jan, J. E., & Groenveld, M. (1993). Visual behaviors and adaptations associated with cortical and ocular impairment in children. Journal of Visual Impairment and Blindness, 87, 101-105. Keilhofner, G., & Burke, J. P. (1980). A Model of Human Occupation, part 1. Conceptual framework and content. American Journal of Occupational Therapy, 34(9), 572-581. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 20 Malkowics, D. E., Myers, G., & Leisman, G. (2006). Rehabilitation of cortical visual impairment in children. International Journal of Neuroscience, 116(9), 1015-1033. Matsuba, C. A., & Jan, J. E. (2006). Long-term outcome of children with cortical visual impairment. Developmental Medicine and Child Neurology, 48(6), 508-512. McKillop, E., & Dutton, G. (2008). Impairment of vision in children due to damage in the brain: A practical approach. British and Irish Orthoptic Journal, 5, 8-14. Newcomb, S. (2010). CEU Article. The reliability of the CVI range: A functional visual assessment for children with cortical visual impairment. Journal of Visual Impairment and Blindness, 104(10), 637-647. Roman-Lantzy, C. (2007). Cortical visual impairment: An approach to assessment and intervention. New York, NY: American Foundation for the Blind. Roman-Lantzy, C., & Lantzy, A. (2010). Outcomes and opportunities: A study of children with cortical visual impairment. Journal of Visual Impairment and Blindness, 104, 649-653. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT Appendix A Guidelines for Standardization of the CVI Range Table of Contents I. II. III. IV. Introduction Occupational Profile and Parent Interview Full CVI Tool Kit Environment and Tool Kits by Phase a. Phase I b. Phase II c. Phase III V. Tips for Administration VI. Characteristic 1: Color Preference VII. Characteristic 2: Need for Movement VIII. Characteristic 3: Visual Latency IX. Characteristic 4: Visual Fields X. Characteristic 5: Complexity a. Object b. Array c. Sensory d. Faces XI. Characteristic 6: Light XII. Characteristic 7: Distance XIII. Characteristic 8: Visual Reflexes XIV. Characteristic 9: Visual Novelty XV. Characteristic 10: Visually Guided Reach 21 PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT This document serves as recommendations for administration of the CVI Range for exclusive use at Cincinnati Childrens Hospital Medical Center. 22 PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 23 Occupational Profile and Parent Interview Questions What does a typical day for your child look like? What concerns do you have for his/her vision? What toys does your child enjoy playing with? What sense does your child typically use first when trying to find an object? (Sight, touch, movement) How do you know when your child is looking at or has seen an object? Does your child have a preferred visual field? (left, right, upper, lower) How closely does your child typically hold objects to his/her face when looking at them? Have you noticed your child looking at an object more intently if it has light, reflective, or movement characteristics? Does your child have a favorite color of toys? Will your child look at himself/herself in the mirror? Do bright or shiny objects capture your childs attention? Does your child ever stare at overhead lights or ceiling fans? Will your child look at books? Does your child have a favorite book? Does it take your child longer to notice an object if it is not touching her? Does your child display increased difficulties using his/her vision when he/she is tired, stressed, or over stimulated? Does your child enjoy watching television? Does your child react differently when presented with new (novel) objects in compared to objects he/she is familiar with? Does your child become easily distracted when there is music playing or other loud noise beyond the toy she is playing with? Does your child make eye contact with you? Do you feel that your child visually recognizes you without talking to him/her? PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 24 CVI Tool Kit This document has three categories: 1. Must-haves (things to order or make now if you do not already have in clinic) 2. Should haves: Pull from Toy Closet or order/make something similar (does not have to be same object, just general similar characteristics) 3. Other suggestions to consider 1. Must-Haves (things to order or make now that you may not already have in clinic): Characteristic/Purpose Picture Object Description Single Color Shiny/Reflective (Movement Qualities) Pom Poms -purchase in: red, yellow, blue, green, purple, and orange Beads -purchase in: red, yellow, blue, green, purple, and orange Single Color Light Up Plastic Ornaments -purchase in: red, yellow, blue, green, purple, and orange **Have only been able to find these at Cappels (plastic) Light up wand - purchase in: red, yellow, blue, green, purple, and orange PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 25 Single Coloring Moving (Non-reflective) Reduce Complexity of Background Plastic Slinkies - purchase in: red, yellow, blue, green, purple, and orange Black Foam Sheets **The sewing room has made us some black felt boards and small black blanket Complexity Black Tri-Fold Spot It Game Plastic placemats or laminated patterned paper (varying patterns/colors, will use with Fruit Loops or small beads to have child find against like colors) PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 26 Laminated 2-d picture collection of familiar animals and objects (use a picture of the actual animal/object, a colored cartoon picture of that animal/object, and black and white line drawing of object) CVI Distance Pictures (varying sizes of familiar simple and complex pictures to assess distance vision do not laminate, adds glare) ***See attachment 2. Pull from Toy Closet or Order/Make something similar (does not have to be same object, just general similar characteristics) Characteristic/Purpose Picture Single Colored, Simple 3-d (non-reflective/Shiny) (DO NOT have to have all of these, there are just a couple suggestions for each category) Object Description Plastic balls - purchase in: red, yellow, blue, green, purple, and orange Rubber ducks - purchase in: red, yellow, blue, green, purple, and orange PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 27 Plastic Rings - purchase in: red, yellow, blue, green, purple, and orange Single Colored, Non-reflective Novel - purchase in: red, yellow, blue, green, purple, and orange Bouncy Ball (any multicolor) Multi-color, Non-reflective 3-d (familiar and novel) (DO NOT have to have all of these, there are just a couple suggestions for each category) Complexity Puzzles of varying difficulty and Plastic Blowfish Character (or something they have likely never seen before) Plastic Sea Turtle (any multicolor animal) Rubber Ball (any multicolor, any shape that might be new/novel) Simple Puzzle (few PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 28 complexity colors) Complex: (Interlocking, multi color) Very simple Homemade books (High contrast red or yellow against black) High Contrast Identification 3. Other Suggestions: High contrast reflective alphabet cards -Memory Card game for phases 2 and 3 (We often place face up spread out on the table to observe scanning in all quadrants and ability to pick out details using 2D materials. Depending on the childs ability level, we will either use very different pictures or very similar pictures to observe the level of detail in the picture they can find). -Mylar shiny/reflective paper or tape for highlighting features of toys -Cause and effect toys (easily lit/easily activated toys) - Light up rattles (see toy list) -CVI Complexity Sequences (order online, made by Christine Roman-Lantzy) -Mirror (or childs toy/book with mirror on it) -Simple childrens book (such as Baby Faces/Emotions) and more complex childrens book, also books with sound (match the object to the sound). PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT -iPad with CVI apps (see handout) - Simple laminated matching books (wheels on the bus, Brown bear, etc) - Different levels of puzzles - Peg board - Beads and string/pipe cleaner - Velcro food - Oreo puzzle - Connect 4 (only for eye hand coordination) 29 PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 30 Phase 1 Environment For a child in the early phases of the CVI Range, start off with a treatment space with minimal visual and auditory distractions. Recommendations to create an environment with reduced complexity: Simple background: Use a plain wall or black trifold/poster board to encourage visual attention toward the objects you are presenting; this eliminates complex background information. Present objects that are a single color. Minimize light distractions: Use a private treatment space, preferably with no windows and lights dimmed or off to decrease light distractions. Work in a space with minimal to no auditory distractions. Reduce the amount of talking while presenting objects. Seating: Provide as much postural support as possible. Consider using a table and chair, Rifton chair, tumbleform chair or in supine on the mat. Distance: Offer object to the child at a distance of 12 inches up to 3 feet away from face Phase 1 Toolkit Children in phase 1 have difficulty using their vision consistently and may need special objects to elicit vision. Objects that assist in eliciting visual attention may have a direct light source, are moving, reflective, and/or a single color. Based on information gained in the occupational profile, such as preferred and non-preferred colors, need for movement, etc., start with objects from the tool kit that match the childs preference. Toy Recommendations: Color objects/boxes (Red, Blue, Green, Yellow, Purple, Orange): Select color boxes that include preferred colors and non-preferred colors with items such as shiny pom-poms, reflective and non-reflective balls, light-up wand/toys, slinkys, reflective beads, plastic food or plastic ducks (simple 3-D, single-colored objects), and 3-D stuffed animals in single colors (Ex. Elmo, Cookie Monster, Oscar, Big Bird, Barney, Nemo). Novelty item (will be child dependent) such as brown teddy bear, Ernie stuffed animal, infant toys Light up toys of varying colors Simple cause and effect toys iPad (see iPad list of recommended apps by phase) PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 31 Phase 2 Environment A child who is able to look at 5-6 colors, have meaningful fixations 50% of the time or more, maintain visual attention on phase 1 toys for 8-10 seconds, and requires no more than 2-3 seconds of processing time between fixations in a phase 1 environment should progress toward a phase 2 environment. For a child in phases 2 on the CVI Range, continue to adapt the treatment space to control for complexity. Recommendations to create an environment with reduced complexity (phase 2): Child may still require simple background: Use a plain wall or black trifold/poster board to encourage visual attention toward the objects you are presenting; this eliminates complex background information. Overhead lights may be slightly dimmed, may still need a private treatment space, preferably with no windows, to reduce sources of light during evaluation. Seating: Provide as much postural support as possible. Consider using a table and chair, Rifton chair, tumbleform chair or in supine on the mat. Distance: Offer object to the child at a distance of 3 feet up to 10 feet from face Phase 2 Toolkit Children in phase 2 may still require some objects that have a direct light source (especially when used with motor tasks), objects with movement/reflection (especially at a distance), or in a single color. Based on information gained in the occupational profile, such as preferred and non-preferred colors, need for movement, etc., select the tool kit that best match the childs visual preferences to start with. Toy Recommendations: Color objects/box (Red, Blue, Green, Yellow, Purple, Orange): Select color boxes that include preferred colors and non-preferred colors with items such as pom-poms, reflective and non-reflective balls, light-up wand/toys, slinkys, reflective beads, plastic food or plastic ducks (simple 3-d, single-colored objects), and 3-d stuffed animals in single colors (Ex. Elmo, Cookie Monster, Oscar, Big Bird, Barney, Nemo). Non-Familiar/Novel item (will be child dependent) such as brown teddy bear, Ernie stuffed animal, infant toy Objects with increased complexity such as multicolor balls or blocks, simple puzzles, Legos, etc. Light up toys of varying colors Simple books and books with mild complexity Memory cards (start with pictures that are very different) iPad (see list of recommended apps by phase) Note: as you add in complexity, notice if there is any difference in visual behaviors (visual glance, sustained gaze, simultaneous look/reach, avoidance, etc). If you add in complexity and the childs visual behavior decreases (less looking, unable to look and reach, etc), this will inform you that the complexity added was too much. If the childs visual behavior does PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 32 not change, this is a good match. Also, note any differences in visual behavior between 2D and 3D objects Phase 3 Environment A child who is able to demonstrate visual fixations on familiar and non-familiar 2-d real pictures on an iPad with backlight and is able to identify a familiar, preferred object or character on a book page while in a phase 2 environment should progress toward a phase 3 environment. For a child in Phase 3, use a treatment space that has increased complexities. Recommendations to create an environment with added complexity (phase 3): Background: Consider a work space with both simple and increased background complexities, such as in front of a blank wall, in front of a wall with clutter (shelves, posters, etc.), near distracting noises. You can use visually complex placemats on the table to increase complexity. Again, notice if there is a difference in visual behaviors when the background is simple vs complex. Be aware of light distractions: Depending on the child, it might be appropriate to use a work space with windows and keep the light sources on. Seating: Provide as much postural support as possible. Consider using a table and chair, Rifton chair, tumbleform chair or in supine on the mat. Distance: Incorporate a hallway or large room where distance vision can be measured up to 20 feet Phase 3 Toolkit Children in phase 3 may only be able to see objects with increased complexity (multiple colors, make noise, etc). Based on information gained in the occupational profile, such as preferred and non-preferred colors, need for movement, etc., select the tool kit that best match the childs visual preferences to start with. Toy Recommendations: Color objects/boxes (Red, Blue, Green, Yellow, Purple, Orange): Select color boxes that include preferred colors and non-preferred colors with items such as: pom-poms, reflective and non-reflective balls, light-up wand/toys, slinkys, reflective beads, plastic food or plastic ducks (simple 3-d, single-colored objects), and 3-d stuffed animals in single colors (Ex. Elmo, Cookie Monster, Oscar, Big Bird, Barney, Nemo). Non-Familiar/Novel item (will be child dependent) such as brown teddy bear, Ernie stuffed animal, infant toy Objects with increased complexity such as multicolor balls or blocks, simple puzzles, etc. Simple and complex books A variety of 2D materials such as memory cards, Spot It, hidden pictures CVI Complexity Sequences CVI Distance Pictures Simple and complex puzzle PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT Eye/hand coordination activities such as stringing beads, peg board, Legos, etc. iPad (see list of recommended apps by phase) 33 Note: as you add in complexity, notice if there is any difference in visual behaviors (visual glance, sustained gaze, simultaneous look/reach, avoidance, etc). If you add in complexity and the childs visual behavior decreases (less looking, unable to look and reach, etc), this will inform you that the complexity added was too much. If the childs visual behavior does not change, this is a good match. Also, note any differences in visual behavior between 2D and 3D objects PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 34 Tips for CVI Range Administration Although directions for administration are listed separately by scoring category, it is important to understand that when presenting an object, most objects and characteristics are multi-dimensional (most pom-poms are a single color and shiny and you present them at a certain distance). Meaning that there is overlap, therefore be cognizant of all characteristics throughout administration, even when specifically evaluating for a single characteristic. At any time throughout evaluation, observe for color preference, latency, difficulties with complexity, visually guided reach, need for movement, visual fields, distance, light gazing, and novelty. Reflexes can be assessed independently. Example 1: When observing a lower functioning child for color preference, you present him with a single-colored, blue light-up stick. You notice that he only looks at it in his right superior visual field, with all other light and sound distractions in the environment reduced. So with that one object, you may be able to identify the following: Preferred color: blue Complexity: needs reduced sensory distractions within the environment Latency: needs increased time to react (up to a full minute), latency may vary in different visual fields Visual field preference: Unable to track, only sees it in the upper right field Visually-guided reach: Does not reach Movement: was the object shiny or moving As you advance through objects, such as shining a light on a sparkly pom-pom, further consider each of these characteristics even though your main focus might by on the specific color of the object you are using. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 35 Color Preference Characteristic Color 0 Attends to a single, preferred color .25 Preferred color dominates, additional 1-2 colors may also elicit /promote visual attention .5 -Highly saturated colors, fluorescent colors promote visual attention -Specific color preference is fading -Color highlighting of salient 3-D or 2- D features is necessary .75 Color highlighting of materials or environment is occasionally necessary 1 Color is no more important for visual attention than for other individuals of the same age Suggestions for Evaluation of Color Preference Begin with a single colored object of childs preferred color (if they have one). If not, try red, blue, and yellow. If child can equally attend to each of these colors, try green, orange, and purple. Observe for differences in single colored objects in eliciting and maintaining the childs visual attention. Compare single colored, brightly lit objects to same colored dull objects. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 36 Need for Movement Characteristic Movement 0 Attends only to objects that are moving or that have reflective properties May notice ceiling fan .25 .5 Movement is necessary to elicit attention and almost always necessary to maintain visual attention May be distracted by unintended movement at near Movement is necessary to elicit attention but not to sustain visual attention May begin to notice the movement of people at distances up to 8-10 feet away May be distracted by unintended movement at distances up to 8 feet away .75 Movement occasionally necessary to elicit visual attention May be distracted by unintended movement at distances up to 20 feet away 1 Movement is not necessary to elicit or hold visual attention Movement will alert the individual but not captivate Suggestions for Evaluation of Need for Movement Start with using reflective/shiny objects such as pom-pom, slinky, reflective beads, etc. to observe childs visual behaviors such as visual attention (sustained, fleeting), ability to track, and ability to see at varying distances. Next, present with objects that are not shiny/reflective but are moving and observe the same visual behaviors. Note any differences. Within this characteristic also note differences in visual behavior considering color preference, distance, and visual latency (to objects with movement qualities vs. non-moving qualities). PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 37 Visual Latency Characteristic Latency 0 Prolonged periods of latency each time an object is presented or each time the individual attempts to visually regard a target .25 Latency is frequent but slightly decreases during periods of consistent viewing .5 Latency occurs about half of the time the individual is attempting to visually attend Latency may be a sign of visual fatigue or over stimulation .75 Latency occurs primarily when the individual is hungry, tired, overstimulated, post seizure. Latency occurs rarely 1 No latency in visual response. The individual visually regards a target without delay Suggestions for Evaluation of Visual Latency Carefully observe latency throughout evaluation. If latency is present initially, continue offering same object or like-object to determine if latency decreases after a warm-up period of repeated viewing. If latency is not initially present, compare amount of latency at end of session compared to beginning of session to see if fatigue impacts childs latency. Within this characteristic also note if latency varies based on color, complexity, distance, and/or movement. Also ask caregiver about latency in different environments, time of day or during learning/school work. If the caregiver reports a warm-up time is needed, ask about how long it typically is. If caregiver brought along a preferred object or toy from home, compare latency of this toy to a new toy. Observe differences in fixations between a very familiar toy and new toy, including how frequently he/she looks away for processing. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 38 Visual Field Preferences Characteristic 0 Fields (right, left Localization toward lateral fields + a target in one superior and inferior specific lateral field fields) .25 Localization or brief fixations in original preferred field of view + emerging or actual visual attention in one additional lateral field .5 Visual fixations occur in two lateral fields + emerging or actual visual fixation in one additional lateral field .75 Visual fixations occur and are stable in three visual field positions. Lower visual field function may be atypical 1 Visual fixations occur in right, left, superior, and inferior visual fields Suggestions for Evaluation of Visual Field Preference If it is documented (or caregiver reports) that the child has a preferred visual field, begin by offering preferred objects within this field to allow child to warm up to visual activities. Once child has demonstrated increased visual fixation in preferred visual field, advance to opposite lateral field and allow for delay time for child to track and/or locate the object in that field. Move the object slowly. If child does not demonstrate a lateral preferred visual field, challenge the lower, upper and central visual field. Additionally, ask caregiver/patient about frequent tripping over objects on the ground or difficulty with curbs or changes of terrain during mobility. Within this characteristic also note differences in visual behavior considering color preference, distance, movement, and visual latency (to objects with movement qualities vs. non-moving qualities). Other ocular considerations: A child may have a visual field cut, but if they have learned to turn their head and move their body to incorporate vision within this field regularly, then they have integrated all visual fields into their routine and can still score a 1 in this category. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 39 Difficulty with Complexity-object Characteristic Complexity-object 0 Visual attention/brief localizations on single-color objects .25 Localizations or brief fixations on objects that have two color surfaces .5 Visual fixations occur (and object discrimination or recognition) on objects that have 3- 4 colors/pattern on the surface 2-dimensional images may be introduced on backlit surface .75 Visual fixations (and object recognition or identification) on objects/images that have 4+ colors/patterns on surface 2-dimensional images without backlighting are now accessible 1 Visual fixation and discrimination recognition, identification of the target is commensurate with the age of the individual Suggestions for Evaluation of Complexity-object Consider the objects the child is able to visually fixate and focus on (and note the complexity of the object). If child is not demonstrating visual curiosity at beginning of session, begin with single colored, potentially light up objects. If child is visual curious, advance to objects with two colors and then multi-color/pattern. Introduce 2-dimensional objects and observe for fixations with and without backlighting. Present both pictures with familiar characters and unfamiliar characters. Start with low complexity (1 color object on solid background). Move toward an object with a couple colors on a solid background, a person/animal doing something, and then a picture that has scenery in it. Observe for differences in visual behavior with single colored objects, multi (2-3) colored objects, 3- d familiar and non-familiar objects, and familiar and non-familiar pictures with and without backlighting. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 40 Difficulty with complexity-array Characteristic Complexity-array 0 Visual attention, brief localizations occur only when the object is presented against a black background in a room with reduced light .25 Visual localizations or brief fixations occur when objects are presented against a black background in a naturally lit or near naturally lit room .5 Visual fixations occur on objects presented against backgrounds with 2- 3 color pattern backgrounds Simple 2- dimensional images detected against a background of 3-4 additional elements .75 Visual fixations occur on 3- dimensional targets against highly patterned backgrounds Two-dimensional target images detected against a background of up to 20 additional elements 1 Targets are located against any background commensurate with the age of the individual Suggestions for Evaluation of Complexity-array Consider complexity of the evaluation environment and background when scoring this characteristic. If child cannot fixate with lights on, reduce complexity of background by turning off lights and use light up toys or use a black trifold with lighting coming from behind the child. When placing objects onto the table, start with one object at a time. As the child progresses, put several objects onto the table and note any changes in visual behaviors. If child is succeeding with visual curiosity and participation, challenge complexity using: Placemats and fruit loops or small colored beads Spot it! Complexity Cards PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 41 Difficulty with complexity-sensory Characteristic Complexity-sensory 0 Visual attention, brief localizations occur only when the object is presented in a room with no visual, auditory, or other sensory input .25 Visual localizations or brief fixations occur even when low intensity, familiar sounds or other single sensory inputs are present .5 Visual fixations occur even when average intensity familiar or novel sensory inputs exist. At times, more than one sensory input may be tolerated without loss of visual attention .75 Visual fixations occur even when multiple, competing familiar sensory inputs exist. Visual attention or the ability to locate a single target may be compromised when the individual is in a novel setting with multiple, competing sensory inputs 1 Visual attention, location, or fixation of a target occurs commensurate with the age of the individual Suggestions for Evaluation of Complexity-sensory Observe how the childs visual behaviors respond to competing sensory input. Challenge visual attention, fixations, and tracking with primary light sources on and off, varying background noise that child is familiar with and unfamiliar with (parent/sibling voice, music, hallway noise, etc), and visual input that makes noise. Note if the child can activate a cause and effect toy and/or iPad while maintaining visual attention. Consider changing treatment spaces from a quiet, private room to a busy room with background noise to further challenge the childs visual processing with competing sensory input. If child can successfully complete tasks within a controlled environment and he/she is physically able, set up a hide and seek game in a more busy room or louder gym. Show them three items, one being single colored, the second having 2-colors, and the third item with increased complexity. Have the child turn around while you hide the three items in plain sight. Place the first item 15-20 feet away on a plain table or in front of a simple background, place the second item 10-15 feet away in front of a more complex environment, and place the third, most complex item, 5-10 feet away in the most complex environment. Have the child turn around and point to the three items from where he/she is standing. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 42 Difficulty with complexity-faces Characteristic Complexity-faces 0 No visual attention on faces .25 Brief attention or localization in the direction of a familiar face. May be reported as looking through rather than looking at a persons face .5 Brief fixations on the faces of familiar people (especially parents) Brief eye to contact with own mirror image .75 Eye to eye contact with most people. May be less attention to the faces of new or unfamiliar people Typical responses to mirror image 1 Visual attention (with eye to eye contact) on the human face is present in all social interactions. Suggestions for Evaluation of Complexity-faces Start by considering caregiver report to determine if child can localize on a familiar face, look at self in mirror, or make eye contact. Observe if child can direct attention to your face or make eye contact at the start of the session and by the end of the session. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 43 Light Gazing Characteristic Light 0 Visual attention only on lights or objects with strong lighted properties Unable to re-direct visual attention away from primary sources of light Does not defend by closing eyes to direct input of intense light .25 Visual localization or fixation primarily begins with attention to lighted properties of objects. May orient to primary sources of light but can be redirected to other targets when environmental lighting is reduced or adjusted May defend by closing eyes briefly or latently to direct input of intense light Visual attention occurs with objects paired with light .5 May be distracted by primary sources of light but is able to redirect attention without changing environmental light Visual fixations occur with 2- dimensional materials presented on lighted surface (lightbox or tablet device) Defends by closing eyes to direct, intense light .75 Attention on primary sources of light occurs only when the individual is tired, stressed, over-stimulated, or ill Backlighting supports visual discrimination, recognition, or identification of 2- dimensional materials (single image or array of images) 1 Responses to light are commensurate with the age of the individual and the task. Suggestions for Evaluation of Light Gazing Determine the child is able to attend to activities while the primary light source is on or if adaptations to lighting are required. Note if child requires light to be paired with objects to elicit visual attention. If child is able to fixate on non-lit 3-D objects, challenge their ability to look at 2-D objects with backlighting and without backlighting. Determine if child reverts back to light gazing at primary light sources when fatigued at end of session. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 44 Difficulties with Distance Viewing Characteristic Distance 0 Visually localizes on targets presented within 12 of face .25 Visually localizes or briefly fixates on targets presented within 2-3 feet .5 Visually locates and fixates on any target at distances up to 6 feet. Occasional visual attention on large moving targets (including people) may occur at 10 feet .75 Visually locates and fixates on a specific target in a familiar or novel setting at distances up to 10 feet May demonstrate visual attention on large moving targets at distances as great as 15-20 feet 1 Visual attention at distances commensurate with the age of the individual Suggestions for Evaluation of Distance Viewing To start, present objects 6-12 inches away from the child face, then move back to 3 feet, 6-10 feet, and 15-20 feet to determine how far away the child can see. Determine if movement is required to elicit visual attention at each distance. Once you determine how far away the child can visually locate a 3D object, check to see if they can visually locate a 2D object. If the child is able, have the either verbalize what they are seeing or pick out the picture that matches the picture they are viewing from a distance. Challenge distance vision with the CVI Distance Pictures binder. Within this characteristic also note differences in visual behavior considering color preference, movement, complexity and visual latency (to objects with movement qualities vs. non-moving qualities). PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 45 Abnormal Reflexes Characteristic Reflexes 0 No blink to touch at the bridge of the nose or the visual threat .25 Intermittent or latent blink to touch at the bridge of the nose. No blink in response to the visual threat .5 Blink to touch at the bridge of the nose consistently present. No blink in response to the visual threat .75 Blink to touch at the bridge of the nose consistently present Intermittent or latent blink to the visual threat 1 Blink to touch at the bridge of the nose consistently present. Blink to the visual threat present commensurate with the age of the individual Suggestions for Evaluation of Abnormal Reflexes Test reflexes while childs eyes are open and visually attending to something. Check for blink reflex when touching your finger tip to the bridge of the nose and when bringing your hand or an object quickly towards their face. Take note of whether the blink is present, absent, delayed and/or consistent/inconsistently present. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 46 Difficulty with Visual Novelty Characteristic Novelty 0 Visual attention, brief localization occurs with highly familiar objects No visual curiosity .25 Visual localization, brief fixations with objects that are visually similar to the original familiar objects No visual curiosity .5 Visual fixations on familiar objects, objects that are visually similar to familiar objects, and with novel objects after several exposures to the new object Visual attention may occur with novel 3 dimensional or some 2 dimensional materials but the individual is unable to interpret the visual display Occasional visual curiosity occurs in novel environments .75 New objects or images are visually discriminated, recognized, or identified based on salient, defining features Visual curiosity occurs in most new environments 1 Visual novelty supports visual attention/alerting response commensurate with the age of the individual Suggestions for Evaluation of Visual Novelty If parent brought a preferred, familiar toy from home, compare childs visual response to the familiar toy, something with similar characteristics in clinic, and a new object. Observe for any visual curiosity with non-familiar objects. Present the child with familiar and non-familiar 2-D pictures of characters, animals, or objects. Consider what visual attention would look like for a typical child of that age. Within this characteristic also note differences in visual behavior considering color preference, distance, movement, complexity and visual latency (to objects with movement qualities vs. non- moving qualities). List specific items within your evaluation that were easier and harder for the child to fixate on and the visual behaviors that went along with those toys, such as becoming guarded or upset with new toys. Specify in evaluation how many of the toys were brand new for the child that day and how many toys a child is able to have in his/her work space. This will allow you to compare visual behaviors with the same toys in future evaluations. Further scoring recommendations: A child might score a .5 if he/she is able to visually engage with 2 new items. A child might score a .75 if he/she can visually engage at 6-8 new items. A child does not have to look and reach or play with toys to score well on this item. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 47 Absence of Visually Guided Reach Characteristic Visually Guided Reach 0 Look and reach always completed as separate actions; look-look away- reach .25 Look and reach may rarely occur as a single action if full support of CVI conditions (black background, object paired with light, movement, and no additional sensory input). .5 Look and reach occur as a single action when background is controlled and/or the target is 3 dimensional + shiny or moving .75 Look and reach occur as a single action more than 75% of the time. Look-look away- reach primarily occurs when materials are highly novel or highly complex. 1 Visually direct reach occurs commensurate with the age of the individual If upper-extremity motor limitations, look + reach occur together even if motor planning requires additional time Suggestions for Evaluation of Visually Guided Reach Throughout the evaluation, observe if child is able to look and reach simultaneously. Consider environmental characteristics and complexity of object when child is able to look and reach. For high functioning kids, utilize tools that challenge eye-hand coordination such as peg board, beads, Connect 4, and 3-d Oreo puzzle. Within this characteristic also note differences in visual behavior considering color preference, complexity, distance, movement, and visual latency (to objects with movement qualities vs. non- moving qualities). It is important to carefully consider a childs potential motor impairments when scoring this item. A child may be unable to physically move his/her arm but can still score in this item. Observe any attempts at an intentional shoulder driven pattern while looking at the same time. Intentional Swats, uncoordinated reaches, and attempts forward while keeping focus on objects and toys can count as visually guided reach. Consider positioning when scoring this item. A child might have to be fully supported in side lying to have the ability to demonstrate visually guided reach. Be cautious to indicate in the evaluation that visually guided reach is not present for a child with motor impairments. PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 48 Appendix B Cortical Visual Impairment Knowing Note Cortical Visual Impairment (CVI) Cortical Visual Impairment is the leading cause of visual impairment for children under the age of 18. Children with CVI can have an eye exam that appears normal but their functional vision does not present as normal. They often have difficulty using their vision during every day activities. CVI is not caused by damage to the eye itself, but rather involves damage to the parts of the brain where visual processing occurs. Children with CVI might look at an item but may not attribute meaning to that item or process what they are seeing. This could lead to a child with CVI having difficulties with looking while reaching during play, looking at teachers, other children or even familiar adults, engaging with new toys and new play environments, completing schoolwork or reading. How is CVI diagnosed? CVI is diagnosed by an ophthalmologist/optometrist. A diagnosis is based on parent interview, clinical observations, medical history, the results of the childs eye exam and the childs score on a functional vision assessment called the CVI Range. What is the CVI Range? The CVI Range is a functional vision assessment completed at CCHMC by a trained occupational therapist. The CVI Range helps us understand how a child uses their vision in everyday activities including dressing, playing, learning, etc. A child is rated on ten characteristics related to CVI such as color preference, difficulties with complexity, and need for movement. Scores range from 0-10; a lower score indicates more severe visual difficulties and a higher score indicates a less severe visual difficulty. Once a score is obtained, it will place a child into one of three phases: Phase one: Children are learning to use their vision. Phase two: Children are learning to use their vision to make something happen (touch a toy to make a sound or reach out for a cookie). Phase three: Children are learning to be visually curious in all environments and while completing all tasks. The therapists use information described by your childs CVI Range score and phase to guide treatment planning, recommend CVI strategies to support your childs visual participation, and track your childs visual development. Why is it important to understand my childs functional vision? Vision of children diagnosed with CVI can improve with the appropriate intervention. Our goal is help your child use his/her vision during every activity and to help your child become as independent as PEDIATRIC CORTICAL VISUAL IMPAIRMENT AND OT 49 possible. Once your child receives a CVI Range score, you and your child can work with an occupational therapist to identify meaningful goals and implement treatment strategies that match your childs unique visual needs. The occupational therapist will offer individual guidance to encourage your childs use of functional vision with recommendations for toys, activities to practice at home, modifications for school, and environment adaptations. Our occupational therapists will collaborate with teachers, orientation and mobility specialists and teachers of the visually impaired in order to assure your childs success. Questions: Contact the Division of Occupational Therapy and Physical Therapy (OTPT) at: (513) 636-4651  ...