Ricerca

... Running head: IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP Implementation of a Father Focused Support Group at IU North NICU Tristan Flynn May, 2022 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: Laura Aust, OT IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU Abstract In the NICU, healthcare professionals primarily focus on the infants and their mothers and unintentionally neglect the fathers. Unfortunately, this leads to fathers feeling less supported, which ultimately negatively impacts their mental health (Noergaard et al., 2017). The purpose of this project is to increase perceived support for IU North past and present NICU fathers through a social media support group. A variety of mental health and educational resources were created and provided to fathers via the Facebook group. Awareness was created through in-unit posters, flyers, word of mouth, and social media. The main findings of this study revealed that fathers felt increased support due to the Facebook group. Infographics were found to be the most beneficial resource provided to fathers and there was a desire to receive more father-specific mental health resources. 2 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU Introduction The Neonatal Intensive Care Unit (NICU) at Indiana University (IU) Health North Hospital is in Carmel, IN. This is a level III unit, which means that healthcare workers can care for babies born prior to 32 weeks gestation and provide highly specialized services within multiple disciplines of care. However, level III NICUs do not treat infants that require surgery, or higher level cardiac treatment like ECHMO (Krodel, 2021). The mission statement for this site is, To ensure that the highest quality of individualized, developmentally supportive, and familycentered care is provided for all babies. The site can hold 24 infants at a time and the average count of infants at a time is 14. The average stay for a NICU infant is around 30 days, but this can differ (H. Krodel, personal communication, February 23, 2021). This NICU has one occupational therapist (OT) that works with each infant two days a week to work on selfregulation, positioning, and developmental skill progression. The occupational therapist also works with the families to educate them on caring for their baby in a way that will promote infant development. For my DCE, I created a Facebook support group specifically for past and present fathers with children in the IU North NICU to improve perceived support by fathers. Unfortunately, in the NICU, many healthcare professionals primarily focus on the infants and their mothers, which leads to the fathers feeling uncertain and powerless, which ultimately impacts their mental health (Noergaard et al., 2017). IU North had no programs directed toward NICU fathers specifically at the time of this project development. In the NICU, the primary patient occupational therapists treat is the infant, however they focus on family-centered care and education, which should include the father. Occupational therapists can focus on mental health during intervention to 3 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU promote performance, participation, role competence, occupational justice, and quality of life (AOTA, 2020). Because of this, our scope of practice allows us to focus on the mental health of fathers so that they can perform, participate, and feel competent in their role as a father. However, without the support and education, a father will have difficulty fulfilling his role as a caregiver and the occupations that are required of this role. Poor mental health of a parent can negatively impact the father-child-dyad, and a childs functioning including their behavior, physical health, and academic performances (Soliday et al., 1999). This paper will address the lack of support perceived by NICU fathers, NICU father mental health, and ways to support this population through a social media platform. Background In the United States in 2018, 1 out of every 10 infants were born prematurely (Leduff et al., 2021). In Indiana in 2019, 10.1% of babies were born premature at less than 37 weeks gestation (Indiana Stats Explorer, 2019). Traditionally, the mother has been known as the nurturing caregiver while the father is thought of as the provider and protector. These cultural expectations have led to a higher value and greater focus on mothers than fathers (Clarkson et al., 2021). Buek et al. (2021) found that many nurses still view fathers as the secondary caregivers to newborns, which leads to a lack of effort to engage and educate fathers. However, more recently, cultural expectations began transforming and therefore the mens role in childcare is becoming equitable with mothers (Noergaard et al., 2017). Since the mother is normally still recovering from birth, the newborns father is often the first person to meet the baby and receive information about the infants condition to relay it back to the mother (Baldoni et al., 2021). However, this does not change the fact that most healthcare professionals still focus on the infant-mother-dyad, which unfortunately leads to a father feeling alone and unsupported 4 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU (Leduff et al., 2021). The longer the infants hospitalization in NICU, the more uncertainty fathers have, which leads to increased anxiety levels and decreased involvement with their child (Clarkson et al., 2019). Paternal perinatal depression (PPD) is prevalent in about 10% of fathers, but it often goes unaddressed and there is still limited research on the subject (Goldstein et al., 2020). Beck and Vo (2020) found that fathers stress about the responsibility of being the primary support person for their family and having daily conflicting priorities such as taking care of their other children, wanting to be in the NICU with their child but also wanting to be in the hospital room with their partner, and working or taking paternity leave. Fathers feel overwhelmed for a variety of reasons and do not have the support or education to help them cope with this stress. Prior to the project development, I met with my site mentor Haley Krodel via Zoom to complete the needs assessment. Haley agreed that a support group for fathers with children in the NICU would be a great DCE project. During the assessment it was confirmed that NICU fathers this site did not get enough education or support due to the focus being primarily on the mothers and the infant (H. Krodel, personal communication, February 23, 2021). From her experience, she had not seen fathers as involved as mothers with their child during NICU hospitalization. Haley felt that if the fathers had increased support, they could gain confidence in their skills and ultimately become more involved with their childs care. Haley reported that there were no current programs set up specifically for fathers in the NICU at this site and unfortunately, due to COVID-19 protocols, in-person gatherings were not permitted. Next, I interviewed Maggie Huffman, a child life specialist on the pediatric unit at IU North. Maggie informed me of a Facebook page through IU North called Past and Present NICU Families (M. Huffman, personal communication, January 17, 2022). She pointed out that this page was for both parents and that there is not a current support group or Facebook page for fathers only. I learned that this 5 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU Facebook page had been a success for past and current families in the NICU to post questions, share successes, and receive support. During a literature search, I found gaps in the literature about programs developed specifically for fathers with children in the NICU. There is literature about programs for mothers or both parents, but even this literature has not all been within the past five years. Mansson et al. (2019) evaluated stress of NICU parents before and after a parent support program using the Parental Stress Scale: Neonatal Intensive Care Unit (PSS: NICU) tool. Though there were significant differences found between the control and intervention program with mothers, there were no significant differences with fathers (Mansson et al., 2019). Researchers (2019) mentioned that fathers may feel stress due to factors that this parent support program or PSS: NICU did not target. This finding emphasizes the importance of targeting father-specific stressors through the Facebook group. Preyde and Ardal (2003) looked at a buddy program that other literature did not. The buddy program consisted of educational support group meetings and a parent buddy program (Preyde & Ardal, 2003). The parent buddy program was a peer support program through mostly telephone from a NICU parent grad to a new NICU parent. Parents and buddies were matched based on similarities. Results show that the mothers in the intervention group that participated in the parent buddy program had less stress, anxiety, and depression than the mothers in the control group. The parent-to-parent support had a therapeutic effect on mothers due to peer support which led to decrease in stress. Mothers in the intervention perceived greater social support and reported less state anxiety and depression (Preyde & Ardal, 2003). Though the authors (2003) found positive results toward mental health for mothers, they did not examine the impact the program had on father mental health. However, the findings indicate that peer support can 6 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU positively impact mental health. These findings indicated that peer-to-peer father support through a Facebook group could be beneficial to their mental health. Parents feel greater support when they have another person to relate to. Literature has made it clear that mothers have been the focus in the past, but it is important that the medical field shifts the focus to include fathers as well in the family-centered approach. It is important to increase support and education for NICU fathers to improve their confidence as a father and mental health to fulfill their role. Through my DCE, I developed a Facebook support group for past and present NICU fathers at IU North Hospital. Theory/FOR Kawa Model The model I chose to guide my DCE project is Kawa. Kawa is a client-centered approach that focuses on the harmony and balance between the human and context (Lim & Iwama, 2011). Life flow, or wellbeing, is the goal for the individual. However, there are barriers that get in the way of this flow (Lim & Iwama, 2011). The Kawa River is a metaphor that represents the flow of life that can be negatively impacted by structures if they are blocking the flow (Lim & Iwama, 2011). I chose this model because fathers with children in the NICU can have an imbalance between their human self and the context, which can affect their mental health and ability to fulfill their role as a father. The Kawa model guides occupational therapists to remove those barriers to make space for river flow. The river side walls and bottom represents the environment and context (Lim & Iwama, 2011). The river side walls and bottom for a NICU father could be the NICU itself, the childs mother, the fathers children (including the NICU neonates siblings), the NICU multi-disciplinary team, and the fathers employer at work. The rocks represent life circumstances such as illness, disability, and trauma (Lim & Iwama, 2011). For a 7 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU NICU father, his rocks may be anxiety, paternal post-partum depression, or infant illness. The driftwood represents attributes and resources (Lim & Iwama, 2011). For a NICU father, the driftwood may be his characteristics, confidence in caring for his child, education, fathering skills, and coping strategies. The Facebook group served as a driftwood and provided educational and supportive resources to help improve a fathers confidence, education, coping strategies, anxiety, and ability to balance any stressors or circumstances in his life. Cognitive Behavioral The frame of reference (FOR) I chose to guide my DCE is Cognitive Behavioral. This FOR identifies a functioning individual as having the ability to control their feelings, thoughts, emotions, and behaviors to appropriately cope with stress. They also can balance their life roles and occupations (Cole & Tufano, 2008). The Cognitive Behavioral approach is useful if there are psychological barriers to occupations and activity engagement (Cole & Tufano, 2008). According to Cole and Tufano (2008) some specific approaches that are normally used with this FOR in occupational therapy are psychoeducational groups, social and life skills groups, support groups, and self-regulation programs. My DCE project focused on helping fathers improve their occupations that correlate with the role of a father while decreasing stress through education, support, and coping skills. The goal was that through support through the Facebook group, the fathers would increase their confidence in their role as a father, decrease their stress, and improve their occupational performance. The cognitive behavioral model is a cycle that begins with emotions, which affect thoughts, which affect behaviors. This cycle can continue in a negative way if it is not intervened, which is the purpose of this project. Though a father will likely have negative emotions about his child being hospitalized, through increased support, education, and resources, the group assisted in cutting off the negative thoughts and rather helped 8 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU them gain confidence to improve their behaviors. Once a father can fulfill his role appropriately, their emotions will improve and ultimately improve their ability to cope. Project Based on the needs assessment, discussion with my capstone supervisor, the child life specialist, and a literature review, there is an evident lack of support for past and present fathers with children in the NICU. The lack of support can lead to a decrease in mental health, confidence, and ability to fulfill their role as a father. The original plan was to create an inperson support group for the NICU fathers, but due to COVID-19 restrictions at the hospital, this was not possible. Since a NICU family Facebook group was already in place with 682 members, we decided that a dad only page could also be beneficial and a safe way to provide education and support. The first step to develop this project was gaining access to the NICU families Facebook page to gain ideas for posts and to view if fathers engaged in this page. To do this, I spoke with the charge nurse on the unit. Next, I created the group and named it NICU Dad Life (Past and Present). It was important to include past and present in the group name so that both populations would feel welcome to then provide a community of support from fathers with a variety of experiences, opinions, and questions. After the page was established, I posted on the current Past and Present NICU Families page and advertised for the dads only page in hopes to gain dads that were willing to share their experiences and provide support to new and current NICU dads. After I created the Facebook page, I developed resources to post based on research, conversations with staff, and questions listed on the Father Support Scale: Neonatal Intensive Care Unit (FSS: NICU), which were created through interviews with fathers (Mahon et al., 2014 9 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU & Arokiasamy et al., 2008). Hunter et al. (2019) assessed a program for parents called HUG Your Baby. This program incorporated videos and hand-outs to educate mothers on preventing and solving common problems related to infants. The results of this study showed that this program was effective in decreasing maternal stress and increasing confidence in caring for their newborn (Hunter et al., 2019). These results (2019) also helped guide the idea behind the resources created for the Facebook page. Posts included infographics on topics such as safe sleep protocols, role of OT in the NICU, stress signs for premature babies, etc. Also, I created fun fact posts to provide a sense of relief for fathers, and to promote engagement on the page. I also interviewed and recorded two members of the group that shared their NICU story, advice, joyful moments, and challenges they experienced during and after their NICU stay. I edited these interviews into short clips and were gradually posted with a prompt. To increase awareness of the group, I created flyers that were posted in a variety of areas on the unit, as well as in each of the rooms. I also created flyers with an excerpt about the group and a QR code on them and passed them out to dads. I met with dads to increase awareness during OT evaluations and treatments, as well as in their down time when they visited their neonates. The QR code seemed to be more successful than just a flyer with the name of the page on it likely due to quicker and easier access. I visited with dads on the unit to inform them of the group, I also mentioned examples of infographics and interview clips that were posted, which seemed to be a motivator. At the beginning of the DCE, reaching current and new NICU dads felt more challenging that reaching past NICU dads. Through conversations and interviews with past NICU dads, they shared that they were more likely to initiate joining the group because they wished they had a network of fathers to lean on when they were going through the NICU experience. Another challenge I faced was reaching fathers at appropriate times. Many dads 10 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU came to visit their child after work, and due to my work hours, there were times that I could not reach all fathers. However, I ended up coming into the NICU after work hours a few times to connect with dads I missed during the day. Week 12 of the DCE, I posted a satisfaction survey on the Facebook page for members to complete. This survey measured the perceived support of NICU fathers at this site since becoming members of the group. Posting the survey on the Facebook page was the most feasible because we wanted to capture if this group had been beneficial, but we did not want to add more stress by providing a visiting father with more paperwork to complete. Also, this was the best way to reach fathers with children that graduated from the NICU and were no longer visiting the hospital. Project Outcomes I created a satisfaction survey to provide to members of the Facebook group. According to Al-Albri & Al-Balushi (2014) patient satisfaction surveys are increasingly used as tools in health care to improve overall quality of organizational performance. Literature reports that measuring patient satisfaction can lead to improved quality of care provided by health care professionals (Al-Albri & Al-Balushi, 201). Since this project was client centered (NICU fathers being the client) it was important that assessing the Facebook page and discovering how to improve it is by directly asking the fathers that were involved. The satisfaction survey was distributed via the Facebook page with a prompt and a link to the Google forms questionnaire. Fathers experience a variety of overwhelming feelings when their child enters the NICU (Prouhet et al., 2018). They are busy caring for their NICU child, partner, and often other children. The Facebook page and resources were created as a way for fathers to utilize at their leisure so that it would not add any stress or burden on them. Because of 11 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU this, we felt it was important to keep the same thought process for the survey. I posted the survey to the Facebook page to prevent adding burden to the fathers. I posted the survey on the Facebook group and pinned to the top so that when members visited the page, that was the first post they would see. Five days after posting the survey, I reached out to group members via Facebook Messenger and asked them to fill out the survey. One father filled out the survey immediately after it was posted on the group. However, after reaching out to members, a total of seven out of twenty-three members completed the survey. Participants were informed that the survey would be anonymous, and all feedback was welcomed. The first two questions on the survey were created to assess the support that fathers feel. The last two questions were used as a feedback tool to gain insight on group members opinions to continue to grow and improve the group, posts, and educational resources provided in the future. This survey consisted of two multiple choice, one open answer, and one Likert scale question. The Likert scale question ranged from 1= I do not feel any support to 5= I feel fully supported. To continue this group and ensure the best support possible for the fathers, it is important that if they are feeling the benefit behind this project and then their ideas on how to improve it because ultimately, this page is meeting their needs. 100% of fathers reported that the Facebook page provided them with more support as a dad. 71.4% of participants ranked their level of support as a 4 and 28.6% of participants ranked their support through the group as a 5 (see Appendix A). Reponses for the most beneficial posts varied. 28.6% of participants reported fun facts were the most beneficial. 42.9% of participants reported that infographics were the most beneficial. 14.3% of participants reported interviews were the most beneficial. Another 14.3% of participants reported other and filled in that the mental health posts were most beneficial (see Appendix A). Responses for what the dads would 12 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU like to see more of also varied but had an emphasis on mental health topics such as coping mechanisms, loss and sadness, and well-being. Summary During this doctoral capstone project, I created a Facebook support group specifically for past and present fathers with children in the IU North NICU. Unfortunately, in the NICU, healthcare professionals tend to focus on the infants and their mothers, which leads to the fathers feeling uncertain, powerless, and ultimately impacting their mental health (Noergaard et al., 2017). With increased support and education, fathers can increase their confidence, caregiver involvement, and father-infant bonding, which in turn can decrease their stress levels (Noergaard et al., 2017; Abdeyazdan et al., 2014). According to Noergaard et al. (2017) fathers have expressed the desire to receive social support, hope, new skills, and education through a network of fathers. The purpose of this project was to increase perceived support for NICU fathers through a Facebook support group. A needs assessment took place with members that worked at the IU North NICU including communicating with occupational therapists, physical therapists, nurses, and the childlife specialist. After determining the need and goals for this project, extensive research was completed to create over 50 resources to provide to the group including infographics, fun facts, mental health resources, and interviews that targeted the needs of a past and present NICU father. Awareness of the project was spread through flyers, word of mouth, and social media. By week eleven of the DCE, twenty-three dads had joined the Facebook group. A satisfaction survey was sent out to members of the group via posting on the feed and messenger. Seven out of twenty-three dads completed the survey. Through this survey, I found that through a Facebook support group with other NICU dads overall they felt more supported. The results of 13 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU the survey showed that members of the group wanted more mental health resources and education. Conclusion During this doctoral capstone experience, I provided IU North NICU fathers with increased support through father-father connections, educational information, and mental health resources. Overall, the IU North NICU benefits from this project because it provides a community and safe place for dads to go to learn, connect, ask questions, and receive support. A Google Drive was created with a variety of folders filled with prompts to be posted on specific dates. Haley Krodel, the occupational therapist, will take over this responsibility and continue to work to support and educate NICU fathers through this group. In the future, health care professionals should be educated on paternal postpartum depression and the lack of support fathers receive in the NICU. There should be an alter in the health care system so professionals place as much value on the father-infant dyad as they do the mother-infant dyad. Fathers should also be provided with resources, support, and the ability to connect with fathers that have gone through similar experiences. 14 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU References Abdeyazdan, Z., Shahkolahi, Z., Mehrabi, T., & Hajiheidari, M. (2014). A family support intervention to reduce stress among parents of preterm infants in neonatal intensive care unit. Iranian Journal of Nursing and Midwifery Research, 19(4). Al-Abri, R., & Al-Balushi, A. (2014). Patient satisfaction survey as a tool towards quality improvement. Oman Medical Journal, 29(1), 37. https://doi.org/10.5001/omj.2014.02 American Occupational Therapy Association. (2020). Occupational therapy practice framework: domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), advance online publication. https://www.aota.org/~/media/Corporate/Files/Secure/Practice/OfficialDocs/Guidelines/ OTPF4 Arockiasamy, V., Holsti, L., Albershelm, S. (2008). Fathers experiences in the neonatal intensive care unit: A search for control. Official Journal of the American Academy of Pediatrics, 121(2). Doi: 10.1542/peds.2007-1005 Baldoni, F., Ancora, G., Latour, J. (2021). Being the father of a preterm-born child: Contemporary research and recommendations for NICU staff. Frontiers in Pediatrics, 9. doi: 10.3389/fped.2021.724992 Beck, C., Vo, T. (2020). Fathers stress related to their infants NICU hospitalization: A mixed research synthesis. Archives of Psychiatric Nursing, 34(2), 75-84. https://doi.org/10/1016/j.apnu.2020.02.001 Buek, K., Cortez, D., Madell, D. (2021). NICU and postpartum nurse perspectives on involving fathers in newborn care: a qualitative study. BMC Nursing, 20(35). https://doi.org/10.1186/s12912-021-00553-y 15 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU Clarkson, G., Gilmer, M., Moore, E., Dietrich, M., McBride, B. (2019). Cross-sectional study of fathers associated with paternal involvement in the neonatal intensive care unit. Journal of Clinical Nursing, 28, 3977-2990. doi: 10.1111/jocn.14981 Goldstein, Z., Rosen, B., Howlett, A., Anderson, M., Herman, D. (2020). Interventions for paternal perinatal depression: A systematic review. Journal of Affective Disorders, 265, 505-510. https://doi.org/10.1016/j.jad.2019.12.029 Hunter, L., Bake, S., Simmons, C., Thompson, J., & Drouin, A. (2019). Implementing a parent education program in the special care nursery. Journal of Pediatric Health Care, 33(2). https://doi.org/10/1016/j.pedhc.2018.06.007 Indiana stats explorer. (2019). In.gov. Retrieved March 05, 2021, from https://gis.in.gov/apps/isdh/meta/stats_layers.htm?q=VAR_ID%20like%20%27BIRTH% %27&prof=18 LeDuff, L., Carter, B., Cunningham, C., Braun, L., Gallaher, K. (2021). NICU fathers: Advances in neonatal care. Advances in Neonatal Care, 21(5), 387-398. doi:10.1097/ANC.0000000000000796 Mahon, P., Albersheim, S., & Holsti, L. (2014). The Fathers' Support Scale: Neonatal Intensive Care Unit (FSS:NICU): Development and initial content validation. Journal of Neonatal Nursing, 21(2), 6371. https://doi.org/10.1016/J.JNN.2014.09.007 Mansson, C., Sivberg, B., Selander, B., & Lundqvist, P. (2019). The impact of an individualized neonatal parent support programme on parental stress: a quasi-experimental study. Scandinavian Journal of Caring Sciences, 33, 677-687. Doi: 10.1111/scs.12663 16 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU Noergaard, B., Ammentorp, J., Fenger-Gron, J., Kofoed, P., & Johannessen, H. (2017). Fathers needs and masculinity dilemmas in a neonatal intensive care unit in Denmark. Advances in Neonatal Care, 17(4), 13-22. doi: 10.1097/ANC.0000000000000395 Preyde, M., & Ardal, F. (2003). Effectiveness of a parent buddy program for mothers of very preterm infants in a neonatal intensive care unit. Canadian Medical Association Journal, 168(8), 969-973. Prouhet, P., Gregory, M., Russell, C., Yaeger, C. (2018). Fathers stress in the neonatal intensive care unit: A systematic review. Advances in Neonatal Care. DOI:10.1097/ANC.0000000000000472 Soliday, E., McCluskey-Fawcett, K., & OBrien, M. (1999). Postpartum affect and depressive symptoms in mothers and fathers. American Journal of Orthopsychiatry, 69(1), 3038. https://doi.org/10.1037/h0080379 17 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU Appendix A Survey Results Figure A1. Figure A2. 18 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU Appendix B Weekly Planning Guide Week 1 DCE Stage (orientation, screening/evaluation, implementation, discontinuation, dissemination) Orientation Weekly Goal 1) Complete orientation by the end of the week Objectives Screening/Evaluation Date complete Meet with my site mentor and other site personnel to introduce myself and educate them on why I am here and my ideas for the next 14 weeks. Meet with supervisor and NICU PT to educate and discuss with them my capstone project plan and ideas. Gain feedback from personnel. 1/10/22 Document supervision plan and update MOU with site mentor Finalize MOU 1/20/22 Complete all paperwork for orientation. 1/13/22 Complete tour of hospital/unit 1/10/22 Understand site environment/where to work/dress code/etc. 2) Discover what is currently available Tasks Research current and past father/parent programs Email child-life specialist to 1/13/22 (pre/post covid) set up meeting time. 19 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU 2 Screening/Evaluation 1) Finalize vision for the project 2) Finalize MOU 3 Screening/Evaluation Create a document with talking points, project ideas, program examples, questions, and research. Discuss with site mentor final idea for project. Meet with child life specialist Discuss with CLS vision for project and ideas. Gain 1/17/22 insight on what has worked in the past. Finalize goals for MOU Meet with site mentor and faculty mentor Continue finding research for project Look at FSS: NICU 1) Begin discussion with fathers Attend follow-up clinic Provide flyers to mothers that attended to give to fathers. 2) Discover possible past fathers that may have interest Talk to charge nurses Are there any fathers that would be interested in interview or involvement? Create Page Make first post 1/20/22 1/18/22 1/29/22 1/27/22 1/24/22 20 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU 3) Begin Facebook Page Increase awareness of Facebook page Post on Past and Present NICU Families Page Create posters and hang on unit Talk to current dads about page Continue developing resources for page Gain information from past NICU father Discover possible beneficial information for Facebook 4 Develop 1) Begin developing resources Gain information from professional resources Create posts for FB page Create infographics and prompts Reach out to 2 NICU fathers via Facebook Meet with NICU father via zoom for interview Attend IU Health fatherchild dyad lecture Create infographics Continue editing interview 1/24/22 1/26/22 1/27/22 1/24/28 1/26/22 1/28/22 1/26/22 1/311/4/22 1/311/4/22 21 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU 5 6 Develop Develop 2) Create awareness about the page 1) Continue developing resources Make posts on page Meet with 4 visiting dads at NICU Create posts 1/311/4/22 Researched information and 2/7utilized information in 2/11/22 NICU module binder Utilized Canva to create infographics 2/72/11/22 Make posts on FB page 2/72/11/22 Meet with visiting NICU dads 2/72/11/22 2/9/22 2/14/22 2) Build rapport and provide support for fathers Connect with fathers and connect fathers to each other 1) Create awareness about the page Inform fathers about NICU dad group Connect present NICU dads with past NICU dads Attend NICU follow-up clinic and provide flyers Go into NICU during work after hours Meet with 4 dads visiting their babies after work. Make FB page more accessible 1/311/4/22 2/18/22 2/16/22 22 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU 2) Increase education to NICU fathers Create educational resources for the Facebook page Create QR code and add to flyers, laminate, and hang up. Create infographics Research information for the infographics 7 Develop 1) Connect with fathers Gain relatable stories and advice from a past NICU father Make posts on FB page Develop questions to prepare for interview Implement 1) Build rapport with dads 2/142/18/22 2/142/18/22 2/24/22 Email interviewee to prepare 2/24/22 Interview past NICU dad 2/25/22 Attend follow-up clinic 8 2/142/18/22 Talk to dads at follow-up clinic and provide flyer to explain group Meet with fathers visiting Meet with dads and provide NICU flyers to explain NICU dad group 2/24/22 2/283/3/22 Provide handouts to dads and educate them on participating in their babys development and inform 23 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU them similar information is on the group 2) Increase education to NICU fathers Create educational Research and work on resources for the FB page canva and Piktochart to create infographics with evidence-based information Post on Facebook group 9 Implement 1) Increase education to NICU fathers Provide NICU fathers with educational resources 2/283/3/22 2/283/4/22 Research and find videos about topics such as Dandle Roo, baby wearing, and swaddling. 3/8/22 Create prompts/posts with videos for information 3/9/22 Organize prompts into Google Drive 3/11/22 Email NICU dad without Facebook the Dandle Roo video 3/10/22 Post on Facebook group 3/83/11/22 24 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU 10 Implement Discontinuation 11 Implementation 1) Increase education to NICU fathers Provide NICU fathers with educational resources Research and video educational videos for NICU fathers specifically 3/143/17/22 Create prompts/posts with videos of information 3/143/18/22 Organize prompts into Google Drive 3/18/22 Post to Facebook page 1/16/22 2) Assess perceived support of NICU fathers Determine how supported NICU fathers feel through the Facebook page & what they find most beneficial Create satisfaction survey via Google Forms 3/16/22 Post survey on Facebook page 3/19/22 1) Increase education and support to NICU fathers Provide mental health and support resources to NICU fathers Talk to social worker about support resources for dads specifically 3/22/22 Compile mental health resources for dads and create prompts 3/223/25/22 Post on Facebook page 3/213/25/22 Discontinuation 1) Assess perceived Determine how supported NICU fathers 3/23/22 25 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU support of NICU fathers 12 13 Discontinuation Dissemination 1) Prepare for transition out of capstone 2) Increase education and support to NICU fathers 1) Educate staff on DCE feel through the Facebook page and what they find most beneficial Finalize organizing Google Drive Send out satisfaction survey via Facebook messenger to members of the group Analyze survey results Organize resources and place into specific dated folders to be posted in the future 3/25/22 3/283/31/22 Create prompts to go with each specific post/resource 3/304/1/22 Provide resources on Facebook group Post to Facebook group with prompt/resource 3/28 Inform staff of project, success, and survey results Meet with staff during huddle to educate them on project 4/5/22 Provide a display of Facebook page and survey 4/5/22 Answer all questions 4/5/22 26 IMPLEMENTATION OF A FATHER FOCUSED SUPPORT GROUP AT IU NORTH NICU 14 Dissemination 2) Increase education and support to NICU fathers 1) Complete dissemination at site Provide resources on Facebook group Post to Facebook group with prompt/resources 4/8/22 Disseminate to supervisor Meet with supervisor to educate her on how to take over and transition into the owner role of the Facebook group 4/12/22 Provide google drive and Facebook instructions 4/12/22 2) Increase Post to Facebook group Provide resources on education Facebook page with prompt/resources and support to NICU fathers Doctoral Capstone Experience and Project Weekly Planning Guide 4/13/22 27  ...

... Occupational Therapy and Music Therapy Working Together in the NICU Alyssa Earls April 29, 2022 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: Laura Aust, OTD, MS, OTR A Capstone Project Entitled Occupational Therapy and Music Therapy Working Together in the NICU Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Alyssa Earls 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 Prematurity is a genuine problem that affects millions of infants each year. However, the NICU can provide life-saving medical interventions to make those infants stable enough to go home. Music therapy could aid in meeting developmental milestones for those Neonatal Intensive Care Unit (NICU) patients that have been there for over a month (Emery et al., 2019). Music therapy is used in the NICU to help sooth and stimulate the infants. Using a survey of the parents knowledge to advocate for more music therapists at the Texas Childrens Hospital in the NICU. The knowledge of the parents is what aided in advocating for more music therapists with the staff and management in the NICU. Introduction The Texas Childrens Hospital is in Houston, Texas. The Texas Childrens Hospital is a non-for-profit organization who wants to create a healthier future for children and women throughout the community (Texas Children's Hospital, n.d.). They are a level IV NICU, the highest level of care available for premature and critically ill newborns (Texas Childrens Hospital, 2020). They have several different NICUs, a level II and level IV (Texas Childrens Hospital, 2020). They were the first to be designated by the Texas Department of State Health Services (DSHS) as a level IV NICU (Texas Childrens Hospital, 2020). The Texas Childrens Neonatal Intensive Care Units see more than 1,800 infants each year, making then one of the largest NICUs in the country (Texas Childrens Hospital, 2020). Texas Childrens Hospital receives babies from all over the country who are in need of life saving treatment. Occupational therapy and music therapy working together provides growth to the infants in the NICU. Music Therapy and Occupational Therapy Working Together in the NICU project looks at the knowledge of the parents in the NICU before and after the co-treatment of Music Therapy and Occupational Therapy. The project looks at the knowledge of just music therapy and occupational therapy and then the knowledge of both working together. There are very few music therapists at the Texas Childrens Hospital. This project is advocating for hiring new music therapists based on the knowledge of the parents. This paper explores the knowledge of the parents before and after several treatment sessions as well as the definitions of NICU and Music Therapy. This paper also explains the different theories and techniques used in the NICU for evaluation. Background Prematurity is a serious public health concern affecting 1 in 9 infants, amounting to approximately a half-million infants per year in the United States alone (March of Dimes, 2013). Having a premature baby in the Neonatal Intensive Care Unit (NICU) can be an upsetting life event for those parents (Ettenberger et al., 2017). The NICU provides life-saving medical care for many infants each year which could be days to months until they are stable enough to be discharged (Anderson & Patel, 2018). The American Academy of Pediatrics (AAP) requires a neonatal therapist (OT or PT) to be on staff for all NICUs levels three and four (Ross et al., 2017). There is also a Speech-Language Pathologist (SLP) on staff who coordinates the care of the infants with the OTs and PTs (Spellman, 2019). A level four NICU maintains a full range of pediatric medical and surgical subspecialists and pediatric anesthesiologists on-site, while a level 2 NICU is just intensive care for the sick and premature infants who need some extra support (Texas Childrens Hospital, 2021). The role of the OT and PT in the NICU is to use the different therapeutic interventions with high-risk infants. COVID-19 pandemic caused many NICUs to restrict the presence of family members to only one caregiver at the bedside at a time and required everyone to always wear masks while in the hospital (Negrete, 2020). As of right now due to COVID-19 the Texas Childrens Hospitals NICUs are only allowing the parents up in the NICU but normally they allow family and siblings up there as well. Negrete (2020) talked about how COVID-19 has changed the way music therapists provide developmental support to infants in the NICU by developing a virtual music therapy class due to safety restrictions. There are very little articles about occupational therapy and music therapy working together to aid in the development of infants in the NICU. Music Therapy Haslbeck and Bassler (2016) wrote that a fetus could respond to sound as early as 25-27 weeks of gestational age. According to Negrete (2020), music therapy is effective in providing developmentally appropriate cognitive, motor, and social simulation to support infants. Emery et al. (2019), talked about how music therapy could aid in meeting developmental milestones for those NICU patients that have been there for over a month. Music enhances the social and behavioral domains and enhances communication skills and positive parenting (Nicholson et al., 2008). Music is carefully selected for each intervention depending on the age of the infant and their developmental progress, meaning the smallest, most fragile infants should have quiet lullabies sung in their native language to soothe and reduce alerting stimuli (Standley & Gutierrez, 2020). Continuous music therapy has a positive outcome on stress behaviors, weight gain, length of stay in the hospital (Teckenberg-Jansson et al., 2011), and rehospitalization (Ettenberger et al., 2017). Music has a positive effect on cognitive ability (Schneider et al., 2019) as well as sociocognitive functions (Biasutti and Magiacotti, 2021). Music therapy helps with processes of personal and social recovery in those in mental health settings (Silverman, 2017). Silverman (2017) talked about how music therapy could reduce mental illness symptoms and increase global functioning. Music therapy targets coping skills, depression and quality of life, stigma, perceived social support, and illness management knowledge (Silverman, 2017, p. 361). Mental health recovery and music therapy have the same principles (Silverman, 2017). Music therapy shows that older adults with mild-to-moderate cognitive impairments can use music listening interventions and active music therapy interventions to reduce behavioral and psychological symptoms (Biasutti & Mangiacotti, 2021). Music can treat depression symptoms and have a positive effect on aged people with dementia (Biasutti & Mangiacotti, 2021). Music can be an effective way to control depression symptoms and to delay the deterioration of cognitive function (Biasutti & Mangiacotti, 2021). Music also affects regions of the brain responsible for biological, cognitive, and motor function, which is related to neuroplasticity (Schneider et al., 2019). As you age, there is a decrease in brain plasticity and total brain volume, which is shown to be absent in musicians meaning that musicians could be less susceptible to degenerations in the brain due to the repetitive music practice (Schneider et al., 2019). According to Schneider et al. (2019), music can increase neuroplasticity which leads to a higher cognitive reserve. However, there is a gap in the literature that has to do with exposure to music and its preventive measures to protect against impairment (Schneider et al., 2019). It not only helps with the neuroplasticity of older adults, but it also has an impact on the brain maturation of infants in the NICU (Haslbeck & Bassler, 2018). There is specialized training for music therapists that helps with neurodevelopmental and family care intervention for premature infants called Neonatal Intensive Care-Music Therapy (NICU-MT) (Standley & Gutierrez, 2020). These therapists are a huge part of the NICU treatment team who emphasize neurologic development, relief of pain and stress, and parents involvement in the infants care (Standley & Gutierrez, 2020). Standley and Gutierrez (2020) talked about if the infants have NICU-MT, by discharge, they will be able to thrive best and be able to accept multiple types of stimulation without being neurologically overwhelmed. NICUMTs are trained in many different skills, such as counseling skills, stress-reduction techniques, and palliative care (Standley & Gutierrez,2020). There are very few music therapists in the NICU because it is a new population for them to see. With the help of the information gathered in this project we can advocate for more music therapists in the NICU at the Texas Children's Hospital. The knowledge of parents at the hospital can help to expand the needs for music therapy. There is truly little literature of the knowledge of parents which means there is room for growth and understanding of the role of music therapy in the NICU. Model and Frame of Reference The model I chose to guide my doctoral capstone experience (DCE) is the PEO model. I chose this because the focus is to have a constant time and space between person, occupation, and environment (Howard, 2019). The interaction between the baby in the NICU, its occupations, and its environment is being changed by the incorporation of music into their environment or any sounds in general. Change is constantly happening because you do not want to give them too much stimulus but just enough to maximize function. Their environment is constantly changing, which means their occupations and performance are constantly changing. Some occupations would be feeding and sleeping. Music, feeding, and a safe environment all together make for max occupational performance for the child in the NICU. The frame of reference I chose to guide my DCE is the Lifespan Frame of Reference, specifically Jean Piagets Theory of Cognitive Development. He studied how children adapt to their environment (Cole & Tufano, 2008). A new event such as music therapy throws off the preemies equilibrium thus making them accommodate to change in the internal structures to accept new environmental input (Cole & Tufano, 2008). The preemies must get used to the extra stimulus to become accustomed to music during feeding or assimilation. Thus, causing equilibrium until a new stimulus, such as new people or sounds, comes along to cause disequilibrium. Project Design This project was developed with the idea of advocating for more music therapists in the NICU at the Texas Childrens Hospital. It uses a survey of the parents knowledge both pre and post watching a treatment session with both Occupational Therapy and Music Therapy. The nine-question survey was made up of questions that both me, the Music Therapist, and the Occupational Therapist thought would be beneficial to know both for my research but also their research project that is currently under review by the IRB. The questions involved knowledge of what the sessions look like, what skills are being worked on by both disciplines, and what the parents think is the benefit of music therapy, occupational therapy, and both working together are (see Appendix 1 for the survey). A survey was chosen because of the nature of the NICU. The NICU is an incredibly stressful place for both the children and their parents. The parents are there to visit their sick children and you do not want to take up that much of their time. A survey is quick and straightforward way to gather information without taking up their time with their children. A challenge of using a survey in this kind of setting is finding the parents. Not all the parents are able to visit their children during the time that we are working with them due to work hours or transportation issues. Another challenge is that not all the children seen by Occupational Therapy are seen by Music Therapy due to case load restrictions on the Music Therapist set by Child Life. This makes is hard to send out the survey when combined with the fact that not all parents show up to visit their children in the morning when the Occupational Therapist and I are seeing the children. However, some successes of the project are that the Music Therapist is willing to work with me to see some of her other children in other NICU pods whose parents are there on a regular basis. Also, the other Occupational Therapists in the other pods have allow my Occupational Therapist to perform one session with those children in the other pods while the parents are there giving me more responses to the survey. The project started by giving the parents the survey to fill out then we performed the session with Music Therapy while the parents were there able to watch. The parents then filled out the same survey in hopes that their knowledge of Music Therapy and Occupational Therapy changed some. This would help me to advocate for more Music Therapist in the NICU at the Texas Childrens Hospital. Project Outcomes A survey was used to collect all the data from parents in the NICU at the Texas Childrens Hospital. In the survey fifty percent (three out of six) parents have had experience with music therapy. That means that they have sat in on a session with the music therapist while their child has been in the NICU. The parents were asked what they though music therapy was working on. Several talked about getting the baby introduced to new sounds while others talked about how it could be used as a calming technique throughout the session. One parent talked about how it works on the infants social and emotional skills, their response to physical, visual, and auditory stimuli, as well as engagement of the muscles. The next question asked about how beneficial they though music therapy was. A majority gave music therapy a five out of five for how beneficial it was while the last parent gave it a four out of five. When given a choice of song, dance, play, cognitive development, and feeding for what interventions they thought music therapy worked on. All the parents said they work on song, play, and cognitive development while two of the parents said music therapy works on dance and feeding. In the survey eight three percent (five out of six) parents have had experience with occupational therapy. That means they have had occupational therapy themselves or have sat in on a session with the occupational therapist while their child has been in the NICU. When asked what they thought occupational therapy worked on, multiple of them talked about how occupational therapy works on the movements of their babies as well as developmental milestones. One parent talked about how occupational therapy accommodates to physical stimuli without guarding, as well as muscle tone and development of gross motor skills. On a scale of five every parent gave occupational therapy a five for how beneficial they thought it was. When asked what interventions they would expect to see all the parents said they would see occupational therapy working on cognitive development such as bringing hands to midline. Five of them said they would expect to see feeding. While four of them said they would expect to see play throughout the session. Only two said dance would be in the session and one said songs would be in the session. They last question talked about if the parents thought music therapy and occupational therapy working together in the same session would make a difference in the babys health and why. All of they said it would make a difference. One said pairing music and occupational therapy allows their child to engage in various parts of the brain while learning responses to auditory stimuli, not just physical. The parent said it would help calm and reassure the baby during the stretches provided. One parent did mention the fact that the baby is seen for only one period of fifteen to thirty minutes instead of two session each being fifteen to thirty minutes. Thus, shortening the time with therapy as well as stimulation and attention. Summary The Texas Childrens is located in Houston, Texas. It is a non-for-profit hospital that wants to provide a healthier future for children and women in the community. The NICU in the Texas Childrens Hospital is a level two and level four NICU and cares for more than one thousand infants each year. This project looked at the knowledge of parents when it comes to Occupational Therapy and Music Therapy working together. Then taking that knowledge and making the case that there needs to be more music therapists to help with the growth of the babies in the NICU. Thus, hoping to advocate for more music therapists at Texas Childrens Hospital. The AAP requires Occupational therapists, physical therapists, and speech-language pathologists to be staffed in the NICU however they do not require there to be and music therapists. The music therapist at Texas Childrens Hospital starts seeing babies in the NICU at 28 weeks of age to work on developmental skills as well as providing cognitive, motor, and social stimulation to the babies. The music is selected based on the babys state meaning the more fragile ones should have softer music such as lullabies that soothe and reduce stimuli. The 9-question survey used helps gain insight into the minds of the parents on topic of music therapy and occupational therapy. However, the challenge of using a survey in this setting is that not all parents visit during the workday due to their own work schedules. The survey received six responses in total. A majority of the parents knew what occupational therapy was but only half knew what music therapy was in the beginning. However, they were able to identify what music therapy works on in terms of what they see during the sessions. They all thought that music therapy was beneficial to the care of their children. Using that information, I could then advocate for more music therapists in the NICU at the Texas Childrens Hospital. Conclusion This project helped to learn the knowledge of the parents in the NICU at Texas Childrens Hospital on music therapy and occupational therapy working together to help benefit the babies who are extremely sick in the level four NICU. This project helped to advocate for more music therapists in the NICU while also learning valuable insight into the minds of the parents there with their children. This knowledge could be used to assess the needs of the parents during their childrens treatment sessions. This project helped to benefit the Texas Childrens Hospital by helping them learn what the parents know and do not know about occupational therapy and music therapy as well as the benefits of both on the care of their children. After disseminating the finding to the site, they could use it to go to management to ask for more music therapists if the money and the position is available for more music therapists. Music therapy is a growing field and there needs to be more music therapists working with the babies in the NICU. The music therapists are vital to the growth and development of the babies in the NICU just like occupational therapy is vital to the growth and development. Music therapy continues to grow and expand into different practice settings. With the help of the occupational therapy team at Texas Childrens Hospital, the music therapy team can thrive in this setting. References Anderson, D. E., & Patel, A. D. (2018). Infants born preterm, stress, and neurodevelopment in the neonatal intensive care unit: might music have an impact? Developmental Medicine & Child Neurology, 60(3), 256266. https://doi.org/10.1111/dmcn.13663 Biasutti, M., & Mangiacotti, A. (2019). Music Training Improves Depressed Mood Symptoms in Elderly People: A Randomized Controlled Trial. The International Journal of Aging and Human Development, 92(1), 115133. https://doi.org/10.1177/0091415019893988 Ettenberger, M., Rojas Crdenas, C., Parker, M., & Odell-Miller, H. (2017). Family-centred music therapy with preterm infants and their parents in the Neonatal Intensive Care Unit (NICU) in Colombia A mixed-methods study. Nordic Journal of Music Therapy, 26(3), 207234. https://doi.org/10.1080/08098131.2016.1205650 Haslbeck, F. B., & Bassler, D. (2018). Music from the Very Beginning-A Neuroscience-Based Framework for Music as Therapy for Preterm Infants and Their Parents. Frontiers in behavioral neuroscience, 12, 112. https://doi.org/10.3389/fnbeh.2018.00112 March of Dimes (2013) Prematurity campaign. http://www.marchofdimes.com/mission/prematurity_indepth.html Negrete, B. (2020). Meeting the challenges of the COVID-19 pandemic: Virtual developmental music therapy class for infants in the neonatal intensive care unit. Pediatric Nursing, 46(4), 198-201, 206. Nicholson, J.M., Berthelsen, D., Abad, V., Williams, K., & Bradley J. (2008). Impact of music therapy to promote positive parenting and child development. Journal of Health Psychology, 13, 226-238. Ross, K., Heiny, E., Conner, S., Spener, P., & Pineda, R. (2017). Occupational therapy, physical therapy, and speech-language pathology in the neonatal intensive care unit: Patterns of therapy usage in a level IV NICU. Research in Developmental Disabilities, 64, 108117. https://doi.org/10.1016/j.ridd.2017.03.009 Schneider, C. E., Hunter, E. G., & Bardach, S. H. (2019). Potential Cognitive Benefits From Playing Music Among Cognitively Intact Older Adults: A Scoping Review. Journal of Applied Gerontology, 38(12), 17631783. https://doi.org/10.1177/0733464817751198 Silverman, M. J. (2017). Comparison of two educational music therapy interventions on recovery knowledge and affect: a cluster-randomized study. Nordic Journal of Music Therapy, 26(4), 359375. https://doi.org/10.1080/08098131.2016.1259646 Spellman, T. (2019). Interprofessional Collaboration Makes the Difference to Infants in the NICU. The ASHA Leader, 24(12), 3638. https://doi.org/10.1044/leader.otp.24122019.36 Standley, J.M., & Gutierrez, C. (2020). Benefits of a comprehensive evidence-based NICU-MT program: Family-centered, neurodevelopmental music therapy for premature infants. Pediatric Nursing, 46(1), 40-46. Teckenberg-Jansson, P., Huotilainen, M., Plkki, T., Lipsanen, J., & Jrvenp, A.-L. (2011). Rapid effects of neonatal music therapy combined with kangaroo care on prematurely- born infants. Nordic Journal of Music Therapy, 20(1), 2242. https://doi.org/10.1080/08098131003768123 Texas Childrens Hospital. (2021). About Us. https://www.texaschildrens.org/departments/neonatal-intensive-care-unit/about-us Appendix 1 Occupational Therapy and Music Therapy 1. Have you had any experience with Music Therapy? a. Yes b. No 2. What do you think we are working on in Music Therapy? 3. On a scale of 1 to 5 (1 being least beneficial and 5 being most beneficial), what do you think the benefit of music therapy is for your child? 1 2 3 4 5 4. What interventions do you expect to see? (Circle all that apply) a. Songs b. Dance c. Play d. Cognitive Development (Ex. Bringing hands to midline) e. Feeding f. Other (write in) 5. Have you had any experience with Occupational Therapy? a. Yes b. No 6. What do you think we are working on in Occupational Therapy? 7. On a scale of 1 to 5 (1 being least beneficial and 5 being most beneficial), what do you think the benefit of occupational therapy is for your child? 1 2 3 4 5 8. What interventions do you expect to see? (Circle all that apply) a. Songs b. Dance c. Play d. Cognitive Development (Ex. Bringing hands to midline) e. Feeding f. Other (write in) 9. Do you think both Music Therapy and Occupational Therapy together in the same session makes a difference in your babys health? Why? (Write in answer) Week DCE Stage (orientation, Weekly Goal Objectives Tasks Date comple te Meet with site mentor, other site personnel, and the site participants to introduce myself and educate them on why I am here/what I will be doing for the 14 weeks set up meeting with key personnel 1/10/22 screening/evalu ation, implementatio n, discontinuation , dissemination) 1 Orientation 1. Complete orientation by the end of the week Document supervision plan and update MOU with mentor 1. Work with Isabella to Finalize MOU 1/12/22 Understand site environment/w here to work/ dress code/ etc. Ensure that all paperwork for orientation is 1/10/22 complete Meet with site mentor and music therapist Start to make my survey Screening/eval uation 2 Screening/eval uation come up with a survey 1. Complete search of literature for program measures to talk about survey and which children use MT Establish outcome assessment 2. survey Get survey out to be translated into Spanish Advanced skills 1. Start to learn the TIMP and other evaluation/ screening tools 2. Start to learn feeding/eat ing techniques 3 Screening/eval uation 1. Complete search of literature for Meet with site mentor to discuss tools and how they are used Observe patients being fed and ask questions Establish information 1/13/22 Review outcome assessments with site mentor and faculty mentor 1/21/22 Review the survey with OT and MT then send it out to be translated 1/21/22 1/20/22 Watch the tools being used a couple of times then use it myself 1/20/22 Watch the techniques and them try them Review the information with site mentor 1/28/22 program measures Advanced skills 1. Continue the TIMP training 2. Continue feeding/eat ing techniques 1/27/22 Meet with site mentor to continue discussing tool and start to watch the tool and use it Start performing parts of the tool 1/27/22 Ask questions and perform feeding Start to feed babies 3. Learn movements that help Ask questions the babies and perform stretch techniques 1/27/22 Start working with babies to stretch them out 4 Implementatio n 1. Send out survey Work with MT and other OTs to send out survey to parents being seen by both Send out survey 2/1/22 2/3/22 Advanced skills 1. Continue TIMP 2. Continue feeding skills Learn the TIMP Learn feeding skills Observe the TIMP being done a couple more times 2/3/22 Feed babies 2/3/22 3. Movement s that help babies stretch 5 Implementatio n Advanced skills 1. Survey 1. Continue TIMP 2. Continue feeding skills 3. Synactive model 6 Implementatio n Advanced skills Ask questions and perform techniques Work with more babies to stretch them out Send out to parents Sent out survey Perform TIMP Observe TIMP being done Perform feeding skills Research Synactive model 1. Send out survey Sent out survey to parents 1. Feeding Perform feeding skills Feed babies/do eval 2/7/22 2/10/22 2/10/22 2/11/22 research Send out survey to more parents 2/14/22 2/16/22 Feed babies/do eval Perform TIMP 2. TIMP 2/17/22 Research model Observe TIMP 3. Synactive model 2/18/22 Research/talk about model with CI 7 Implementatio n 1. Survey/sess Perform coions treatments with MT Advanced skills 1. Feeding 2. TIMP Perform skills Perform TIMP Start cotreatment with the parents there 2/21/22 2/23/22 Feed babies/do evals 2/24/22 Observe/perf orm TIMP 8 Implementatio n 1. Survey/ sessions 1. TIMP Advanced skills 2. Feeding Perform co treatment with MT Perform TIMP with parents present Perform TIMP Perform skills Feed babies/perfor m evals 2/28/22 3/1/22 3/2/22 9 Implementatio n Advanced skills 10 Implementatio n 3. Developme ntal skills Read more about developmental skills Research articles 1. Send out postsurvey Find parents to do survey Talk with parents 1. Feeding Feed/eval babies 2. TIMP Perform 3. Developme ntal skills Reading/perfor m skills 1. Wrap up survey collection Get last couple of parents to complete survey 1. Feeding Advanced skills 2. TIMP Feed/eval babies/ read articles Perform 3. Developme ntal skills Read/perform skills 3/4/22 Work with Rose or our babies to feed Perform with supervision 3/7/22 3/8/22 3/10/22 3/103/11 Perform skills with supervision Talk with parents Work with Rose or our babies to feed Perform with supervision when appropriate 3/14/22 3/15/22 3/17/22 3/18/22 Perform skills with supervision 11 Discontinuatio n Advanced skills 1. Disseminat ion planning 1. Feeding 2. TIMP 3. Developme ntal skills Review the survey Feed/eval/read articles Organize data 3/25/22 and write dissemination plan 3/24/22 Work with rose or our babies to feed 3/24/22 Perform Read/perform Perform with supervision when appropriate 3/24/22 Perform skills in ever session 12 Dissemination Advanced skills 1. Disseminat ion plan Review plan and make PowerPoint for presentation 1. Feeding Feed/eval/read articles 2. TIMP Perform 3. Readings Present presentation to staff 3/30/22 Work with Rose or our babies to feed 3/31/22 Perform with supervision when appropriate 3/31/22 4/1/22 Read on ECMO, CDH 13 14 Advanced skills Advanced skills Read articles and ask questions 1. Feeding Feed/eval Feed babies and work on pacing 4/7/22 2. TIMP Perform 4/7/22 3. Readings Read on ECMO, CDH, and respiratory distress Perform when appropriate 1. Feeding Feed/eval 2. TIMP Perform 3. Readings Read on ECMO, NICU, prematurity, respiratory distress read articles and ask questions Feeding babies Perform when appropriate 4/8/22 4/14/22 4/14/22 4/14/22 Read articles and ask questions  ...

... 1 A Shepherd Community Center Peer Mentorship Program Lydia Delamarter, OTS April 22, 2022 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: Brenda S. Howard, DHS, OTR, FAOT 2 Abstract Shepherd Community Centers mission is to, do life with our neighbors, and see their felt needs first-hand. Breaking down our preconceived notions and cultural blind-spots is key to achieving real impact in the lives of neighbors living in generational poverty, (Shepherd Community Center, n.d.). They offer many services, including student ministry and after-school programming for preschool through high school. Key stakeholders identified that students would benefit from training in education participation, financial management, and health management. Mentoring relationships often benefit impoverished youths occupational performance, especially social participation (Mantovani et al., 2020; Quimby et al., 2018). The purpose of this peer mentorship program was to improve student- and caregiver-perceived occupational performance, skill mastery, and knowledge within six IADLs. When outcome measure responses were compiled, major themes in occupational improvement were social participation, financial management, work, and education. These findings support future program implementation at Shepherd to promote key occupational and skill development for their students. 3 Introduction Shepherd Community Center is a Christian faith-based organization working to break the cycle of generational poverty and promote healthy ways of living for those living on the eastside of Indianapolis. Shepherds mission is to, do life with our neighbors, and see their felt needs first-hand. Breaking down our preconceived notions and cultural blind-spots is key to achieving real impact in the lives of neighbors living in generational poverty, (Shepherd Community Center, n.d.). The site offers a variety of services, including student ministries and after-school programming for preschool through high school students. Shepherd previously offered a mentorship program between adult volunteers and their students, however this ended due to lack of grant funding and Covid-19 restrictions. After conducting a literature review and several informational interviews, I determined that a peer mentorship program would serve multiple needs of both the site and target population. The purpose of this capstone project was to improve student- and caregiver-perceived occupational performance, skill mastery, and knowledge related to Instrumental Activities of Daily Living (IADL). An additional goal of this project was to support positive and transferable social interaction skills as established through mentee-mentor pairings. Paired middle/high school (n=4) and third grade students (n=5) participated in weekly sessions to foster a healthy relationship with their partner and develop necessary skills for occupational performance in the following categories: Social participation, education, work, financial management, health management and maintenance, and leisure. According to a variety of sources, mentorship programs have the potential to significantly benefit impoverished youths occupational fulfillment and address their limited experience with occupational choice. Social connectedness, 4 a common theme between my sessions, is a primary benefit of mentorship programs. Mantovani et al. (2020) and Quimby et al. (2018) both found that after participating in a mentoring relationship, at-risk youth reported an improved sense of, not only social connectedness, but selfesteem, school performance, and community access. Background Youth and families served by Shepherd face a variety of occupational challenges related to their impoverished state and limited knowledge of and access to community resources. In an interview with Andrew Green, Shepherds assistant executive director and chief program officer, I gathered useful information about the target population. Regarding demographics, single mothers are the most common family provider at the center. However, there are significantly fewer instances of single parenthood within the Hispanic and Latinx community as this family dynamic does not align with their rooted cultural beliefs. About 75% of the children and adolescents are Hispanic or Latinx, and the remaining are 15% African American and 10% white (A. Green, personal communication, March 12, 2021). I also gathered demographic information regarding the prevalence of disability among children and adolescents served by Shepherd. Green stated that there is a low prevalence of disability among their youth, and it is typically a minor developmental delay or diagnosis of ADHD/ADD (A. Green, personal communication, March 12, 2021). After conducting a Needs Assessment and several interviews, I gained a better understanding of how my project could align with the sites needs and address their neighbors occupational deprivation. I asked Shepherd what challenges related to skill development and character their children and adolescents face. I learned that poverty hinders self-advocacy and 5 ones ability to navigate complex systems (K. Williford & A. Southerland, personal communication, February 17, 2021). Related to advocacy, I asked how stigma, stereotyping, and discrimination impact their neighbors. There are many who believe that those in poverty are there by choice or because of poor decision-making. This mindset discourages self-advocacy, leads to harsh judgment and a lack of assistance from those living above the poverty threshold (K. Williford & A. Southerland, personal communication, February 17, 2021). Understanding these social injustices influenced the design of my mentorship program and led me to promote self-advocacy throughout. To determine if any occupational needs emerged in response to the global pandemic, I asked Shepherd how Covid-19 impacted their operations and neighbors. One of Shepherds primary concerns in response to Covid-19 was protection for their neighbors (K. Williford & A. Southerland, personal communication, February 17, 2021). Shepherd shut down their facility quickly and transitioned from regularly distributing food from their pantry to delivering food boxes on only select days of the week. Not only was meal distribution impacted, but their educational services were, too. Within days, Shepherd transitioned all educational and church services to be virtual. Due to Covid-19, Shepherd also transitioned from their primary focus on long-term care to immediate care and food supply (K. Williford & A. Southerland, personal communication, February 17, 2021). My mentorship program restored a focus on long-term care by providing students with the knowledge and skills required for lasting occupational benefits related to the maintenance of health and well-being. Research has shown there are many additional benefits that mentorship programs offer atrisk youth. Perhaps, one of the most common benefits they yield is social connectedness. King et 6 al. (2018) designed and implemented a mentorship program called LETs CONNECT between at-risk youth and adults. Their results showed that after six months of participation, social connectedness significantly improved. In addition, Mantovani et al. (2020) conducted interviews with at-risk teens who were part of a female mentorship program. Both the mentors and mentees had a history of sexual abuse, family violence, neglect, and strained relationships. Through these intimate, trusting relationships, mentees reported an increased sense of social connectedness, along with greater community access, emotional stability, and resilience (Mantovani et al., 2020). Quimby et al. (2018) led a 3-year longitudinal study examining the impact that positive peer association and modeling had on African American adolescents living in impoverished Chicago communities. Annual surveys targeted beliefs about self-esteem, school connectedness, aggression, and parental relationships. Results indicated that as positive peer relationships improved over time, so did self-esteem, school connectedness, and parental closeness (Quimby et al., 2018). Each of these studies supports my mentorship programs desired outcomes, including improved social participation and positive interpersonal skill development. Not only is increased social connectedness a likely outcome of mentorship programs, but improved academic performance is common as well. Several studies included here examined after-school mentorship programs that improved academic performance (e.g., attendance and grades). For example, Ciocanel et al. (2017) completed a meta-analysis with 24 studies in their review. The risk behaviors these programs aimed to reduce included substance use, sexual behavior, and antisocial behavior. The two areas that the mentoring relationship improved most were academics and psychological well-being (Ciocanel et al., 2017). Lastly, Wesley et al. (2017) interviewed mentors working in school-based programs with at-risk youth. Mentees in 7 this program experienced regular strain from poverty, social exclusion, violence, and limited education, which led to increased anger and aggression. Mentors indicated that coping strategies, emotional regulation, conflict resolution, and active listening effectively produced desired outcomes and helped the mentees reach their academic goals (Wesley et al., 2017). Similar to the previously mentioned programs, I developed Shepherds first peer mentorship program to promote skill development for greater occupational engagement and fulfillment, which was achieved through the meaningful, dynamic relationship fostered between mentor and mentee. Guiding Model: Person-Environment Occupation (PEO) Based on my preparatory work and the current literature, I used PEO to guide my DCE. PEO focuses on the complex interactions and transactions that occur between the individual, their environment, and their occupations (Cole &Tufano, 2008). Most impoverished youth would be considered dysfunctional because a harmonious relationship does not exist between their person, environment, and occupation; their environment is the primary source of dissonance. My mentorship program provided a safe environment where youth could explore their occupational interests and achieve their occupational goals. Change and motivation, according to PEO, comes from an intrinsic desire for occupational mastery and competency over occupation (Cole & Tufano, 2008). At the start of my mentorship program, I determined the participants occupational preferences and desires. By doing this, the mentorship sessions were client-centered and promoted intrinsic motivation to attend and actively participate. 8 Guiding FOR: Lifespan Development Along with PEO, I used the Lifespan Development frame. Lifespan Development focuses on helping individuals successfully navigate transitional stages of life, including mastering ageappropriate occupations (Cole & Tufano, 2008). Depending on their family dynamic, home environment, and exposure to adverse childlife events, impoverished youth may be dysfunctional according to Lifespan Development. By establishing mentoring relationships, I aspired to help participants develop the necessary skills to initiate and maintain positive relationships. Lifespan Development defines motivation as the intrinsic need for skill mastery and change as occurring through skill achievement (Cole & Tufano, 2008). After viewing the responses on the All About Me worksheet and initial assessments, I incorporated participant interests and addressed lowscoring areas through session activities to establish intrinsic motivation for skill mastery. Project Design The information that Shepherd shared on impoverished youths occupational deprivation and the evidence that mentoring relationships provide a variety of occupational benefits for atrisk youth supported my decision to design and implement a peer mentorship program. I devoted the first portion of my project to site and staff orientation, developing a weekly planning guide (see Appendix A), screening and evaluating potential participants, and designing my outcome measures and mentorship sessions. During staff orientation, I conducted informational interviews with a variety of team members to learn about their roles, discuss my project, and validate the focus of my sessions. This information also served me as I identified potential areas of occupational therapist collaboration and developed advocacy resources for the site. 9 I volunteered in after-school programming with students to screen potential mentors and mentees. I observed their social interaction skills, behaviors, and general participation in afterschool activities. I also consulted my site mentor during this process as she has personal relationships with the students and could speak more to their character traits and skills. I selected three middle school and two high school students as mentors who demonstrated leadership skills and positive character traits. I selected five third grade students as mentees based on their attendance rates and their teachers perspective of who would benefit most from a mentoring relationship. After participant selection, I developed a handout to collect demographic information, student preferences, and their perceived character traits. This handout also served as a helpful tool when pairing mentees to mentors. I reviewed several outcome assessments to guide my format and content, including the Child Occupational Self-Assessment (Kramer et al., 2010), the Child and Adolescent Scale of Participation (Bedell, 2011), and University of Madison-Wisconsin mentor training surveys (UW ICTR Team, n.d.). The outcome assessments I designed were fifteen item questionnaires using a five-point likert scale to target participants and their caregivers perception of their skills and knowledge related to the six occupational categories. I administered an initial and final outcome assessment and compared responses to identify areas of improved occupational performance, skill development, and knowledge to support continuation of the program in the future. The design of each mentorship session followed Cole (2017) format for a 7-step group session, including an introduction, activity, sharing, processing, generalizing, application, and summary. In addition, Garringer and MacRae (2008) peer mentorship program development guide offered some suggestions on participant screening and recruitment but was especially 10 informative as I designed my mentor training session. In the mentor training session, I included discussion of program mission and goals, mentor expectations, and the membership contract (Garringer & MacRae, 2008). Throughout the design process, I utilized OBrien and Kuhaneck (2020) as they provide multiple examples of intervention activities, specifically for social and education participation. Inspiration for the remainder of my content was based on previous experiences in graduate school and on fieldwork rotations. For six weeks, students met at Shepherds main campus on Thursday evenings and participated in a forty-five minute to hour long session. As leader, I guided students through icebreakers and primary activities, facilitated thoughtful discussion and reflection, and corrected negative behaviors while recognizing positive ones. In addition, I commonly accessed the OTPF (American Occupational Therapy Association, 2020) as I educated mentors and mentees on a variety of foreign concepts to them, such habits, routines, and balance. Each week, a Shepherd volunteer was present for assistance managing behaviors and guiding students through activities. Project Outcomes Questionnaire Design, Administration, and Limitations I designed a 15-item questionnaire to examine participants self-perceived occupational performance, skill mastery, and knowledge related to social participation, education, financial management, work, health management, and leisure. To obtain more reliable reports, I adapted the original questionnaire to collect caregivers perceptions of their childs occupational health. I assigned 2 to 3 items to each of the 6 occupations, and these items addressed skill mastery and foundational knowledge needed to achieve occupational fulfillment. Also, each item was specifically designed to address occupational barriers for impoverished youth, such as limited 11 access to a variety of healthy foods (A. Green, personal communication, March 12, 2021). After reviewing each item, the reader selected one of five Likert scale values that they agreed with most, ranging from Exactly Like Me (1) to Not Like Me At All (5). Of note, there were several edits made between the initial and final versions of the questionnaire design and administration, which potentially hindered the validity of the program outcomes. For example, during the initial administration process, questionnaires were distributed and completed by most participants in their homes. However, all mentors and mentees completed final questionnaires at Shepherd, which allowed me to clarify any items of confusion. All additional edits were made to wording and format of the questionnaire to promote increased readability and response rates. Identified Participant Themes Social Participation From initial to final assessment, there was an increase of one mentee selecting Exactly Like Me in response to, I understand how my words and actions affect other people, for a total of four out of five mentees selecting this way. Upon initial assessment, most mentors responded to the statement, I am not good at making new friends and keeping them, by selecting Like Me. However, upon final assessment these mentors selected Not Like Me and Not Like Me At All, suggesting that their mentoring relationships improved their perceived ability to build lasting friendships with others. Financial Management Regarding financial management, there was an increase from one to three mentees reporting that they do not like to spend their money right away, but theyd rather save. Prior to the program, only one mentor selected Exactly Like Me in response to I know how much 12 college costs and the different ways I can pay for it, with the remaining two mentors reporting they were unsure. The session on financial management successfully increased their knowledge here as all three selected either Exactly Like Me or Like Me on the final questionnaire. Work Upon initial assessment, no mentees reported feeling confidence in their abilities to apply for or interview for a job. However, final assessment results revealed that three out of five mentees positively resonated with the statement, I am confident I would do well applying and interviewing for a job/college. In addition, one mentee strengthened their awareness of the many different careers they could have one day with the majority selecting Exactly Like Me for this item. No themes were identified for mentor responses within this area of occupation. Education Initially, only one mentor reported understanding what their learning style was and how they retained information best with the remaining mentors reporting they were unsure. However, upon final assessment all mentors selected Exactly Like Me in response to this item. No significant themes were identified for mentees within education participation. Identified Caregiver Themes Financial Management No significant themes were identified for mentee caregiver responses. However, the primary theme identified for mentor caregiver responses was financial management, specifically regarding their perception of their childs understanding of how much college costs and the ways that they can pay for it. Upon initial administration, all caregivers responded that they were 13 unsure of whether their child understood these concepts. However, upon final administration, all mentor caregivers responded Exactly Like My Child or Like My Child in response. General Observations Throughout the peer mentorship program, I observed as partnership dynamics evolved and participants behavior fluctuated, and I recognized areas of occupational growth related to social participation. For example, there were several factors impacting participants interpersonal communication and the meaning ascribed to their relationship with their partner. After completing recruitment procedures and mentor training, two mentors were unable to participate. In response, one of the mentors volunteered to work with two mentees, and I recruited a Shepherd volunteer to partner with the remaining mentee. However, after multiple behavioral disruptions caused by the group of three, I decided to separate them and assist the lone mentee during the activity portion of the final two sessions; this resolved most of the disruptions. Despite changes in partnership dynamics and intermittent behavioral disruptions, I recognized two partnerships that demonstrated consistent improvements in interpersonal communication, teamwork skills, and closeness as the program progressed. More specifically, these mentors independently led their mentees through the sessions activities, neither mentor or mentee required verbal cues to stay on task, and partners frequently demonstrated closeness through appropriate hugging and high-fives. These observations and the programs fostering of healthy social interaction between participants supports its continuation in the future. Summary Impoverished communities living on the eastside of Indianapolis have access to many services through the Shepherd Community Center. Previously, Shepherd offered opportunities 14 for mentorship between adult volunteers and their students. Recently, due to limited funding, a lack of program leadership, and Covid-19 restrictions, Shepherd has been unable to foster these relationships. According to several established staff members at Shepherd, impoverished children and adolescents often demonstrate poor leadership skills, respect, empathy, and selfadvocacy (A. Green, personal communication, March 12, 2021). Related to occupational health, this population experiences occupational deprivation with some daily activities, including educational performance, financial management, and health management and maintenance (A. Green, personal communication, March 12, 2021). After learning that mentoring relationships have strong potential to improve social participation, educational performance, and mental health and well-being (King et al., 2018; Wesley et al., 2017; Mantovani et al., 2020), I decided to design and implement a peer mentorship program. Elements of the programs design included participant recruitment and matching, mentor training, pre- and post- measures of participants perceived occupational performance, skills, and knowledge, as well as their caregivers, and the creation of six group sessions, each targeting a different area of occupational deprivation for the population. The targeted occupations included social participation, education, work, financial management, health management and maintenance, and leisure as targeted occupations. Additionally, each session followed Coles (2017) format for a 7-step group session, including an introduction, activity, sharing, processing, generalizing, application, and summary. When comparing initial to final outcome measure responses, major themes in participants occupational improvements were social participation, financial management, work, and education. To elaborate, most mentors and mentees reported improvements in their abilities 15 and knowledge related to social participation and financial management. However, improvements in work were mentee-specific and improvements in education were mentorspecific. Regarding changes in caregivers perceptions of their childs occupational performance, skills, and knowledge, one theme that emerged for mentors specifically was financial management. Furthermore, caregivers grew in their perceptions that their child has an adequate understanding of how much money it costs to attend college. No significant themes were identified for mentee caregiver responses. Caregiver questionnaire administration methods, language barriers, and lack of program understanding may have been primary barriers here. Conclusion Upon completion of Shepherd Community Centers first peer mentorship program, several themes in occupational improvement emerged and most participants with consistent partnerships throughout demonstrated positive interpersonal communication skills and appropriate displays of affection with their partner. After presenting all program details and outcomes, key stakeholders reported interest in continuing the program, provided someone is interested and available to serve as leader. More specifically, they reported that the information provided during the dissemination presentation were extremely comprehensive. As Shepherd prepares to employ future capstone students, I am confident those working within student programming better understand the role of the profession in a community-based setting and will be able to voice their needs more effectively. Also, they will have long-term access to all occupational therapy and program-related materials, which could be used to educate new hires and those at Shepherd working outside of student programming. Although community-based practice may be an uncommon setting for occupational therapists, there are many opportunities 16 to support occupational fulfillment and justice on community levels, especially impoverished populations impacted by environmental factors and limited access to supportive systems. 17 References American Occupational Therapy Association. (2020). Occupational therapy practice framework; Domain and process (4th ed.). Bedell, G. (2011). Child and adolescent scale of participation. [Assessment]. Boston, MA: Sargent College of Health and Rehabilitation Sciences. Retrieved from http://sites.tufts.edu/garybedell/files/2012/07/CASP-Youth-Version-Revised-12-2911.pdf Ciocanel, O., Power, K., Eriksen, A., & Gillings, K. (2017). Effectiveness of positive youth development interventions: A meta-analysis of randomized control trials. Journal of Youth & Adolescence, 46, 483-504. DOI: 10.1007/s10964-016-0555-6 Cole, M. B. (2017). Group dynamics in occupational therapy: The theoretical basis and practice application of group intervention. Thorofare, NJ: SLACK Inc. Cole, M.B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK, Inc. Garringer, M. & MacRae, P. (2008). Building effective peer mentoring programs in schools: An introductory guide. Mentoring Resource Center. King, C. A., Gipson, P., Y., Arango, A., Ewell Foster, C., Clark, M., Ghaziuddin, N., & Stone, D. (2018). LETs CONNECT community mentorship program for youths with peer 18 social problems: Preliminary findings from a randomized effectiveness trial. Journal of Community Psychology, 46, 885-902. DOI: 10.1002/jcop.21979 Kramer, J. M., Kielhofner, G., & Smith, E. V., Jr. (2010). Validity evidence for the Child Occupational Self-Assessment. American Journal of Occupational Therapy, 64, 621 632. doi: 10.5014/ajot.2010.08142 Mantovani, N., Gillard, S., & Mezey, G. (2020). Children and young people in care participating in a peer-mentoring relationship: An exploration of resilience. Journal of Research on Adolescence, 30(S2), 380-390. DOI: 10.1111/jora.12483 O'Brien, J. C. & Kuhaneck, H. (Eds.). (2020). Case-Smith's occupational therapy for children and adolescents (8th ed.). Elsevier. Quimby, D., Richards, M., DeCarlo Santiago, C., Scott, D., & Puvar, D. (2018). Positive peer association among black American youth and the roles of ethnic identity and gender. Journal of Research on Adolescence, 28(3), 711-730. DOI: 10.1111/jora.12363 Shepherd Community Center (n.d.). Shepherd Community Center. https://shepherdcommunity.org/learn/about/ UW Madison ICTR Team. (n.d.). Pre and post mentoring surveys. ICTR UW institute for clinical and translational research. https://ictr.wisc.edu/mentoring/pre-and-postmentoring-surveys/ 19 Wesley, J. K., Dzoba, N. P., Ventura Miller, H., & Rasche, C. E. (2017). Mentoring at-risk youth: An examination of strain and mentor response strategies. American Journal of Criminal Justice, 42, 198-217. DOI: 10.1007/s12103-016-9353-7 19 Appendix A Doctoral Capstone Experience Weekly Planning Guide Week DCE Stage Weekly Goals Objectives Tasks Date to Complete 1 Orientation 1. Complete orientation by the end of the week 1. Identify 6-8 areas of occupational deprivation for target population, meet with HR and student ministry staff members to discuss their role and details of my 14 week project 1. Complete and turn in 1/14/2022 all necessary paperwork for HR, take notes during meetings with staff and record potential ideas for session focus, create doc for brainstorming session content and structure 2 Screening, Evaluation, and Design 1. Begin pre-program questionnaire 2. Design mentor only session 3. Design mentorship session 1 1. Determine format of pre assessment, number of questions, specific language use 2. Determine roles of mentor, number of mentors, activities to complete, and create handout for mentor personalities for matching 3. Determine content included in 7 stages of group session, date/time/location of session 1. Consult site mentor, research assessments, determine how to translate doc to spanish 2. Read Garringer & MacRae (2008) mentor training, consult site mentor on date/time of session 3. Research youthfriendly activities targeting social participation, organize resources and materials, consult site mentor on logistics of session 1/21/2022 20 Week DCE Stage Weekly Goals Objectives Tasks Date to Complete 3 Screening, Evaluation, and Design 1. Select mentors and mentees 2. Continue pre-program questionnaire 3. Design mentorship session 2 1. Determine student volunteers vs. leader selection, number of desired participants and age differences (at least 2 years) 2. Determine desired outcomes of program and related content for questions to measure participant growth (differentiate between mentor and mentee) 3. Determine content included in 7 stages of group session 1. Consult site mentor 1/28/2022 and after-school program leads on student participants (consider attendance rate) 2. Consult site mentor on potential need for caregiver waiver for permission to participate, continue to research questionnaire formatting and content 3. Research youthfriendly activities targeting education participation, determine age-appropriate educational topics, organize resources and materials 4 Screening, Evaluation, and Design 1. Complete pre-program questionnaire 2. Design mentorship session 3 3. Establish student pairings 4. Distribute Caregiver Authorization and Waiver Form 1. Finalize editing and grammar, determine form of distribution to caregivers, form of participant incentive for returned questionnaire, and due date (2/14), get to Edson for translation by end of day on 2/2 2. Determine content 1. Accept final edits from site and faculty mentors 2. Research youthfriendly activities targeting financial management, organize resources and materials 3. Consult site mentor 2/4/2022 21 Week DCE Stage Weekly Goals Objectives Tasks included in 7 stages of group session 3. Distribute and collect All About Me Worksheets to compare mentor-mentee results 4. Ask Renee to review caregiver waiver and send to Edson for translation by 2/2 and after school program leads on pairings, compare student personalities and school performance Date to Complete 5 Screening, Evaluation, and Design 1. Distribute (2/7) and collect pre-program questionnaires by session 1 (2/14-2/18) 2. Design mentorship session 4 3. Purchase materials 1. Print/email materials, call with reminders, communicate participant incentive to return questionnaire 2. Determine content included in 7 stages of group session 1. Consult site mentor with any questions 2. Research youthfriendly activities targeting work, organize resources and materials, consult site mentor on guest speaker 6 Screening, Evaluation, Design, and Implementation 1. Design mentorship session 5 2. Lead mentor only session 3. Lead mentorship session 1. Determine content included in 7 stages of group sessions 2. Confirm date, time, and location with site mentor, remind mentors 3. Confirm date, time, and location with site mentor, remind mentors and mentees, reflect on positives, negatives, and 1. Research youth2/18/2022 friendly activities targeting health management, organize resources and materials, decide on end of program gift 2. & 3. Determine and relay any assistance needed from after-school leaders 2/11/2022 22 Week DCE Stage Weekly Goals Objectives Tasks Date to Complete possible changes to be made next session 7 Implementation 1. Design mentorship session 6 2. Lead mentorship session 2 8 Implementation 1. Lead mentorship session 1. Confirm date, time, and 3 location with site mentor, remind mentors and mentees, reflect on positives, negatives, and possible changes to be made next session 1. Determine and relay 3/4/2022 any assistance needed from after-school leaders 9 Implementation 1. Lead mentorship session 1. Confirm date, time, and 4 location with site mentor, remind mentors and 1. Determine and relay 3/11/2022 any assistance needed from after-school leaders 1. Determine content included in 7 stages of group sessions 2. Confirm date, time, and location with site mentor, remind mentors and mentees, reflect on positives, negatives, and possible changes to be made next session 1. Research youth2/25/2022 friendly activities targeting leisure participation, organize resources and materials 2. Determine and relay any assistance needed from after-school leaders 23 Week DCE Stage Weekly Goals Objectives Tasks Date to Complete mentees, reflect on positives, negatives, and possible changes to be made next session 10 Implementation 1. Lead mentorship session 5 2. Finalize details of postprogram questionnaires 3. Complete OT advocacy resources for caregivers 11 Implementation 1. Lead mentorship session 1. Confirm date, time, and 1. Confirm date, time, and location with site mentor, remind mentors and mentees, reflect on positives, negatives, and possible changes to be made next session 2. Determine any differences between pre and post questionnaires, translate to spanish, reflect on best forms of distribution, determine participant incentive for returned questionnaire, determine due date 3. Create comprehensive caregiver handout include OT definition, signs that child may benefit, location of services, direct access, and payment, translate to spanish 1. Determine and relay 3/18/2022 any assistance needed from after-school leaders 2. Consult site and faculty mentor for any feedback 3. Consult site mentor with any questions 1. Determine and relay 3/25/2022 24 Week 12 DCE Stage Discontinuation Weekly Goals Objectives Tasks 6 2. Distribute OT advocacy resources for caregivers 3. Distribute post-program questionnaires for data collection (due by end of week 3/25 or Monday after spring break 4/4) location with site mentor, remind mentors and mentees, reflect on positives, negatives, and possible changes to be made next session 2. Confirm number of resources needed, print/email materials, post materials at Shepherd 3. Print/email materials, call with reminders, communicate participant incentive to return questionnaire any assistance needed from after-school leaders 2. Consult site mentor with any questions 3. Consult site mentor with any questions 1. Review and interpret questionnaire responses to determine program effectiveness 2. Begin presentation for staff in-service, including results and advocacy 1. Research standards for effectively interpreting and quantifying questionnaire responses, determine limitations and biases 2. Organize and include visuals of data on presentation, suggest continuation of program with specific adjustments, include definition of OT, OT role in community-based setting, estimated salary/benefits, determine 1. Consult faculty mentor with any questions 2. Research communitybased OT stats, consult faculty mentor with any questions, consult site mentor for date/time/location of meeting Date to Complete 4/1/2022 25 Week DCE Stage Weekly Goals Objectives Tasks Date to Complete date/time/duration/location of meeting, send out invites and reminders 13 Discontinuation 1. Finalize presentation for staff in-service, including results and advocacy 1. Organize and include visuals of data on presentation, suggest continuation of program with specific adjustments, include definition of OT, OT role in community-based setting, estimated salary/benefits, determine date/time/duration/location of meeting, send out invites and reminders 1. Research communitybased OT stats, consult faculty mentor with any questions, consult site mentor for date/time/location of meeting 4/8/2022 14 Dissemination 1. Present in-service to Shepherd staff 1. Confirm details of meeting, write note cards, practice presentation and adjust content to meet required time frame, write thank you cards to site mentor and other helpful staff 1. Consult site and faculty mentors with any questions, continue to work on OTD 612 assignments 4/15/2022  ...

... 1 Sensory Integration in Pediatric Trauma-Informed Care Kylie Collins May, 2022 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: Kristina Watkins, OTD, MOT, OTR 2 Abstract Child Advocacy Centers (CACs) are a central location for the multidiscipline approach to trauma recovery in children. CACs could provide more effective services with a trauma-informed occupational therapist on their team. To prove the need for occupational therapy, I implemented screens before forensic interviews utilizing the Sensory Profile-2, BOT-2 Brief, and PDMS-2 as appropriate. Through these screens, I found that 67% of children demonstrated sensory, fine motor, or gross motor deficits severe enough to recommend intervention. The Sensory Profile-2 served a dual purpose as a screen and to guide me in my recommendations for appropriate sensory items for the child to use during the forensic interview to reduce stress. 100% of interviews were enhanced when a child chose to use a sensory item. The findings of this study make a compelling case for how an occupational therapist can enhance all components of the CAC model. 3 Sensory Integration in Trauma-Informed Care Across America, there are over 939 Child Advocacy Centers (CACs) (Annual Report 2021, n.d.). CACs provide a child-friendly, central location for the multidiscipline, holistic delivery of critical services throughout a childs abuse recovery process (Herbert & Bromfield, 2016; Michaels House, 2010). Through this system, children tell their full story once during a recorded forensic interview to reduce re-traumatization by the process and to reduce the possibility of inconsistent details, which increases the likelihood of holding offenders accountable for their actions (Michaels House, 2010). Staff involved with CACs use the best evidence-based practice of trauma-informed care and the standards set in place by the National Childrens Alliance (NCA) to guide their actions during every step of the childs recovery process. Michaels House is the accredited CAC for Greene County, Ohio. Disciplines involved at Michaels House, and any accredited CAC, include medical staff, childrens services, victim advocacy, prosecutors, law enforcement, and mental health (Our standards, n.d.; U.S. Department of Justice, 2020). Research shows that children who experience trauma frequently have sensory modulation deficits due to the physiological changes that occur in the childs nervous system during their trauma experience (American Occupational Therapy Association, 2018; Davis, 1999; Grabbe & Miller-Karas, 2018; Gronski et al., 2013; Joseph et al., 2021; Lane et al., 2019; The Trauma Foundation, 2021; Whitcomb et al., 2015; Whiting, 2018; Wilkinson, 2016). Currently, no mandated staff at an accredited CAC addresses the sensory deficits present in children who experience trauma. This project will advocate for the value of occupational therapy in the CAC model by addressing this gap in services and enhancing all components of a CAC by addressing sensory modulation deficits. I assessed whether a need was present in the population that 4 Michaels House served using the Sensory Profile-2 (SP-2) (Dunn, 2014). In addition, I used the Peabody Developmental Motor Scales-2 (PDMS-2) (Folio & Fewell, 2000) and BruininksOseretsky Test of Motor Proficiency-2 (BOT-2) Brief (Bruininks & Bruininks, 2005) to screen children for fine and gross motor deficits. Background Children who receive services from Michaels House are the victims of serious crimes in Greene County, Ohio. In a typical year, Greene County law enforcement and childrens services receive reports on approximately 1,200 abused or neglected children (Michaels House, n.d.). About of the children represented in those reports meet the qualifications for Michaels House to conduct a forensic interview, and about of those children return for mental health services throughout the year (Michaels House, n.d.; T. Wiles, personal communication, February 23, 2021). Children who receive services from Michaels House have experienced trauma, such as abuse, neglect, and toxic stress; they undergo physiological changes in their bodies, including their nervous system (The Trauma Foundation; 2021). These changes manifest as sensory and behavioral issues (Lane et al., 2019); this interferes with the efficacy of talk therapy (Warner et al., 2013). An individual cannot participate in deep, meaningful, and educational conversations with a therapist if they are unable to ground themselves, regulate the lower functioning parts of their brain, and allow the higher functioning sections, such as the prefrontal cortex, to take over (The Trauma Foundation, 2021; Warner et al., 2013). The time a child takes to heal from their trauma experience positively correlates with the dysfunction the child experiences when completing their daily occupations and fulfilling their meaningful roles (Warner et al., 2013). If a child never recovers from their trauma experience or never learns valuable tools in their mental health sessions, they are more likely to perpetuate the cycle of intergenerational toxic stress (Harper, 2019). This cycle is caused by passing their trauma to the next generation through 5 genetics and unhealthy living environments, increasing the likelihood of their child having developmental delays (Harper, 2019). To prevent this intergenerational cycle of toxic stress from perpetuating, an occupational therapist needs to engage the children in occupation-based interventions using the Ayres Sensory Integration frame of reference (Werner et al, 2013). This model is built on two important principles: the brain is a self-organizing system and intersensory integration is foundational to function (Lane et al., 2019, p. 2). The brain self-organizes through neuroplasticity, meaning the nervous system, and therefore the brain, changes in response to experiences (Lane et al., 2019). Bad experiences, such as repetitive trauma, can lead to a negative change in the nervous system, whereas positive experiences, such as sensory integration interventions, can lead to positive change in the nervous system. These nervous system changes that occur through sensory integration intervention manifest as sensory modulation while negative experiences can lead to sensory modulation disorders (Lane et al., 2019). Sensory modulation disorders cause an individual to over or under-react to sensory stimuli, which interferes with engagement in daily activities, such as eating, self-care, socialization, and sleep (Lane et al., 2019). Researchers have found that providing children who have sensory modulation deficits with a sensory regulation room and sensory regulation strategies leads to increased appropriate behaviors, decreased reliance on regulatory medication, and decreased occupational dysfunction (Warner et al., 2013). A study conducted by Warner and colleagues (2013) installed sensory rooms in a locked residential setting for severely traumatized adolescent girls between the ages of 13 and 19 years old. These rooms could be customized to meet a residents specific sensory needs (Warner et al., 2013; Wiglesworth & Farnworth, 2016). The purpose of these rooms was to encourage a resident to relax, self-organize, and engage in self-coping strategies through calming sensory items in the 6 room (Warner et al., 2013; Wiglesworth & Farnworth, 2016). The long-term goal for these rooms was for the residents eventual engagement in regulation strategies on their own (Warner et al., 2013; Wiglesworth & Farnworth, 2016). One room focused on the traditional five senses of sight, smell, touch, hearing, and taste, and the other room focused on the vestibular and proprioceptive senses with the added benefit of providing a space to practice sensory regulation skills, such as how to lower their arousal when in a high arousal state (Warner et al., 2013). The authors of this study found the need to use restraints on residents declined by 68% within the first year of implementation of sensory integration interventions (Werner et al., 2013). The literature is sparse on research involving sensory integration in CACs. Although Michaels House is not a residential facility, the ideas presented in articles like Werner et al. (2013) are still applicable and pediatric victims of trauma, regardless of setting, can benefit from sensory integration interventions. Theory To guide this project, I implemented the Person-Environment-Occupation (PEO) model (Law et al., 1996) and the Ayres Sensory Integration (ASI) frame of reference (Ayres, 1972). The PEO model depicts the dynamic relationship between the person (me), the environment (Michaels House), and the occupation (this study), and how the three titular components interact to achieve a maximum fit (optimal occupational performance of myself at Michaels House completing this study) (Law et al., 1996). I was able to adjust my role and implementation of this study at Michaels House as my understanding of their operations deepened. This model served as a professional knowledge base to shape and guide my study and assist with professional reasoning as the study developed and evolved (DeIuliis & Bednarski,2020). 7 The ASI frame of reference guided my project planning and implementation. This frame of reference, created by occupational therapist and neuroscientist Jean Ayres, provides context and reasoning for the behaviors individuals can exhibit in response to their sensory environments (Lane et al., 2019). ASI provides a solid foundation of information on the physiological aspects of the sensory systems that molded my path of research and project design. Although ASI interventions are frequently not reimbursed by insurance companies, they are backed by research and supported through reliable and valid occupational assessments, such as the Sensory Profile-2 (Asher, 2014; Dun, 2014). The use of ASI in this study is meant to assist clients in successful participation in their daily occupations through sensory modulation and emotional regulation (Cole & Tufano, 2008), two tools difficult to teach to individuals who have experienced trauma without utilizing proper grounding techniques (Warner et al., 2013). Project I developed this project because I saw a need in CACs that the core components were not filling. Without a requirement to have an occupational therapist on staff to work with child victims of abuse, there is no one to screen for sensory or motor dysfunction (Herbert & Bromfield, 2016; Whiting, 2018; Wilkinson, 2016). In personal communications with Teresa Wiles, the site director at Michaels House, we discussed numerous ways to implement sensory integration into CAC services, such as forensic interviews and mental health services. Ideas included creating a sensory gym or Snoezelen room, conducting occupational therapy interventions, and creating sensory home programs. We determined that I would screen incoming pediatric abuse victims for sensory and motor dysfunction using the SP-2, BOT-2 Brief, and PDMS-2. The administration of the Sensory Profile-2 provided information on whether a child was sensory seeking or sensory avoiding, how 8 they integrated and reacted to sensory stimuli, and which specific senses the child experienced dysfunction in (Asher, 2014; Whitcomb et al., 2015). With this information, I provided the child with a small selection of relevant sensory items to choose from that they could utilize during their forensic interview to reduce anxiety (Cameron et al., 2020; Joseph et al., 2021; The Trauma Foundation, 2021). After the interview, the forensic interviewer reported which item the child chose, how often the child utilized the item, and whether the interviewer thought the use of the item was helpful to the interviewing process. In addition, the child reported if they liked using the item and if they thought it was helpful to have during the forensic interview. Before the child left Michaels House, I completed the BOT-2 Brief or PDMS-2 with them, as age-appropriate (Asher, 2014). I used the data from these three assessments to determine the number of children who could benefit from regular occupational therapy services and determine the need for occupational therapy in the CAC setting. At the start of this project, I created a weekly planning guide to help keep myself on track, as seen in the Appendix. I conducted an implementation evaluation for my project and used quantitative data to support my final argument and advocate for the inclusion of an occupational therapist at Michaels House and all CACs (DeIuliis & Bednarski, 2020; Tuersley et al., 2018). Data gathered included reported data from the forensic interviewers, reported data from clients, and assessment scores. I collected additional quantitative data from a mental health counselor at Michaels House about her clients who were displaying sensory deficits. Since I was not an employee of Dayton Childrens Hospital, I was unable to collect direct data on their clients. Project Outcomes I used the BOT-2 Brief, PDMS-2, and Child and Adolescent/Adult Sensory Profile-2 assessment tools to screen clients for fine motor, gross motor, and sensory deficits throughout 9 this project. The BOT-2 Brief has internal consistency reliability coefficients in the mid-.80s and interrater reliability coefficients ranging from 0.92 0.99 (Asher, 2014). According to Jirovec et al. (2019), the BOT-2 Brief is a useful tool for identifying delays in neurotypical children. The PDMS-2 has reliability coefficients ranging from 0.82 0.99 for content, time, and scorer (Asher, 2014). The PDMS-2 motor quotients have a high or very high correlation to scores with the Bayley III. These motor quotients have multiple types of validity including content description, criterion, and construct identification correlation coefficients >0.80 (Asher, 2014). The SP-2s sections have internal consistency coefficients of 0.57 0.93, Child form interrater reliability of 0.49 0.89, and the Adolescent/Adult form showed 0.639 0.775 for age groups and quadrant scores (Asher, 2014). In addition, the forensic interviewers were asked to record which sensory item(s) a client used during a forensic interview, what percentage of the time they thought the client used the item, and whether they thought the sensory item was useful to the client or hindered the forensic interview process. Clients were asked if they liked using the sensory item and if it was helpful during their interview. This simple descriptive data collection was consistent, short, and easy for forensic interviewers and clients to complete after forensic interviews. A total of thirty children participated in forensic interviews and completed the occupational therapy assessments. Of those thirty children, 80% chose to use a sensory item during their interview. The forensic interviewers reported that 100% of interviews conducted with children who chose to use a sensory item were enhanced. Of the children that chose to use a sensory item, 100% reported they liked using the sensory item and thought it was helpful to have during the forensic interview. Figure 1 describes the percentage of time children who chose to use sensory items during their forensic interview used their chosen item(s). 10 Figure 1 Sensory Item Use in Forensic Interviews Number of Children 20 15 10 5 0 0% 25% 50% 75% 100% Percentage of Time in Forensic Interview Note. Children who did not choose to use a sensory item are not included. Of the children assessed, 67% showed a sensory, fine motor, or gross motor dysfunction severe enough for intervention; only 6% showed no sensory, fine motor, or gross motor deficits. Table 1 shows the percentage of children who displayed sensory deficits according to their SP-2 results. Table 1 Sensory Deficits as Noted by the Sensory Profile-2 Sensory Profile-2 Percent of Assessments Categories Indicating a Deficit Sensory Seeking 30% Sensory Avoiding 37% Sensory Sensitivity 37% Low Registration 33% Note. These numbers add up to greater than 100% due to children scoring outside average in multiple categories The scores on the BOT-2 Brief and PDMS-2 show that 39% of children assessed demonstrate below average or well below average fine or gross motor skills. The mental health counselor 11 reported that 25% of her caseload had sensory deficits severe enough to clearly impact the efficacy of sessions. Summary The CAC model is less than 40 years old and is constantly improving its standards to increase the quality of care children receive while recovering from trauma (Herbert & Bromfield, 2016; Our standards, n.d.). To continue this path of improvement, the National Childrens Alliance, the accreditor of CACs, should consider requiring an OT position at all facilities. Previous research clearly shows the changes in the body due to trauma, especially in the dysfunction of the ANS (Grabbe & Miller-Karas, 2018; Gronski et al., 2013; Harper, 2019; Lane et al., 2019; The Trauma Foundation, 2021; Wilkinson, 2016). If these changes go unaddressed, they can lead to mental and physical health problems in adulthood and the cycle of intergenerational toxic stress will continue, negatively impacting the next generation (Harper, 2019; Lane et al., 2019; Warner et al., 2013). If the CAC model were to have an occupational therapist, they could address the ANS dysfunction and sensory processing deficits, which would increase a childs ability to self-regulate during mental health sessions (Warner et al., 2013). This increased efficacy of mental health sessions can address the higher-functioning effects of trauma, prevent long-term negative health outcomes, and break the cycle of intergenerational toxic stress (Harper, 2019; Warner et al., 2013). The results clearly show the value occupational therapy can bring to the staff at Michaels House and the entire CAC model. An increase in the quality of almost 80% of interviews can assist law enforcement by generating stronger evidence to use in court. An OT onsite would help reinforce the information provided to children and caregivers during medical evaluations. Increasing the services a child receives and providing additional education to children and caregivers can help childrens services close cases sooner and decrease 12 the number of cases that are reopened. Installing an OT into the CAC model could help improve the daily functioning of 67% of children who have experienced trauma. Conclusion By showing a need for OT in this emerging practice area, there is a potential to create over 900 new OT positions across the nation and reach tens of thousands of children that might have never received occupational therapy interventions otherwise. Michaels House and Dayton Childrens Hospital both benefited from the knowledge gained during this project because the children they treat were able to receive higher quality services. With this knowledge, Michaels House and Dayton Childrens Hospital have the power to be ahead of the curve when the NCA inevitably makes occupational therapy a core component of CACs. Further research should be conducted at other CACs across the nation to support the findings of this project. As support and evidence grow, occupational therapy will gain a new practice area, and children who have experienced trauma will receive more holistic and effective care. 13 References American Occupational Therapy Association. (2018). AOTAs societal statement on stress, trauma, and posttraumatic stress disorder. American journal of occupational therapy, 72(7212410080). Annual report 2021. (n.d.). National Childrens Alliance. Retrieved April 22, 2022 from https://www.nationalchildrensalliance.org/annual-report-2021/ Asher, I. E. (2014). Ashers occupational therapy assessment tools: An annotated index. (I. Asher, 4th). American Occupational Therapy Association, Inc. Ayres, A. J. (1972). Sensory integration and learning disabilities. Los Angeles, CA: Western Psychological Services. Bruininks, R. H., & Bruininks, B. D. (2005). Bruininks-Oseretsky test of motor proficiency: Manual (2nd ed.). NCS Pearson, Inc. Cameron, A., Burns, P., Garner, A., Lau, S., Dixon, R., Pascoe, C., & Szafraniec, M. (2020). Making Sense of Multi-Sensory Environments: A Scoping Review. International Journal of Disability, Development & Education, 67(6), 630656. https://doi.org/10.1080/1034912X.2019.1634247 Cole, M. B. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Slack Incorporated. Davis, J. (1999). Effects of trauma on children: Occupational therapy to support recovery. Occupational Therapy International, 6(2), 126-142. DeIuliis, E. D. & Bednarski, J. A. (2020). The entry level occupational therapy doctoral capstone: A framework for the experience and project. SLACK Incorporated. Dunn, W. (2014). Sensory profile 2: Users manual. Person Clinical Assessment. 14 Folio, M. R., & Fewell, R. R. (2000). Peabody developmental motor scales: Examiners manual (2nd ed.). PRO-ED. Grabbe, L., & Miller-Karas, E. (2018). The trauma resiliency model: a bottom-up intervention for trauma psychotherapy. Journal of the American Psychiatric Nurses Association, 24(1), 76-84. Gronski, M. P., Bogan, K. E., Kloeckner, J., Russell-Thomas, D., Taff, S. D., Walker, K. A., & Berg, C. (2013). The Issue Is Childhood toxic stress: A community role in health promotion for occupational therapists. American Journal of Occupational Therapy, 67(6), e148e153. http://dx.doi.org/10.5014/ajot.2013.008755 Harper, N. S. (2019). Trauma-Informed Care for Children and Adolescents. Pediatric annals, 48(7), e255-e256. Herbert, J. L., & Bromfield, L. (2016). Evidence for the efficacy of the Child Advocacy Center model: A systematic review. Trauma, Violence, & Abuse, 17(3), 341357. https://doi.org/10.1177/1524838015585319 Joseph, R. Y., Casteleijn, D., van der Linde, J., & Franzsen, D. (2021). Sensory Modulation Dysfunction in Child Victims of Trauma: a Scoping Review. Journal of Child & Adolescent Trauma, 14(4), 455470. https://doi.org/10.1007/s40653-020-00333-x Jrovec, J., Muslek, M., & Mess, F. (2019). Test of motor proficiency second edition (BOT-2): compatibility of the complete and Short Form and its usefulness for middle-age school children. Frontiers in pediatrics, 7, 153. Lane, S. J., Mailloux, Z., Schoen, S., Bundy, A., May-Benson, T. A., Parham, L. D., ... & Schaaf, R. C. (2019). Neural foundations of ayres sensory integration. Brain sciences, 9(7), 153. 15 Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P., & Letts, L. (1996). The personenvironment-occupation model: A transactive approach to occupational performance. Canadian journal of occupational therapy, 63(1), 9-23. Michaels House. (2010). Michaels house child advocacy center protocol. Michaels House. (n.d.). About us. Retrieved April 22, 2022. https://michaelshousecac.org/aboutus/ Our standards. (n.d.). National Childrens Alliance. Retrieved April 15, 2022 from https://www.nationalchildrensalliance.org/ncas-standards-for-accredited-members/ The Trauma Foundation. (2021, February 22). Trauma and the Nervous System: A Polyvagal Perspective [Video]. YouTube. https://www.youtube.com/watch?v=ZdIQRxwT1I0 Tuersley, L., Bray, N., & Edwards, R. T. (2018). Development of the Wheelchair outcomes Assessment Tool for Children (WATCh): A patient-centered outcome measure for young wheelchair users. PLoS ONE, 13(12), 116. https://doi.org/10.1371/journal.pone.0209380 U.S. Dept of Justice. (2020). In Focus: Children's Advocacy Centers. Warner, E., Koomar, J., Lary, B., & Cook, A. (2013). Can the body change the score? Application of sensory modulation principles in the treatment of traumatized adolescents in residential settings. Journal of Family Violence, 28(7), 729-738. Whitcomb, D. A., Carrasco, R. C., Neuman, A., & Kloos, H. (2015). Correlational research to examine the relation between attachment and sensory modulation in young children. American Journal of Occupational Therapy, 69(4), 1-8. Whiting, C. C. (2018). Trauma and the role of the school-based occupational therapist. Journal of Occupational Therapy, Schools, & Early Intervention, 11(3), 291-301. 16 Wiglesworth, S., & Farnworth, L. (2016). An exploration of the use of a sensory room in a forensic mental health setting: Staff and patient perspectives. Occupational Therapy International, 23(3), 255-264. Wilkinson, I. G. (2016). Why some children come to school with Baggage: The effects of Trauma due to poverty, attachment disruption and disconnection on social skills and relationships. Canadian Journal of Family and Youth, 8(1), 173203. 17 Appendix DCE Weekly Planning Guide Week DCE Stage 1 Orientation Weekly Goal Complete Orientation Objectives Meet the staff Watch training videos Screening/ Evaluation 3 Attend new team member orientation Create NCAC account Date complete 1/12 1/14 Observe forensic interview process Determine an appropriate time to administer OT assessments Start obtaining sensory materials for forensic interviews Create list of sensory items to use in forensic interview Orientation Research outcome measure for project Establish outcome measurement Screening/ Evaluation Gather information about creating an OT position Educate site on OT/SI Contact UIndy alum Prepare questions 1/26 for Zoom call Give OT/SI presentation Create OT/SI presentation Implementation 2 Tasks Implementation Communicate with FI team about the process and ideas Get list of items cleared by FI team Create list of amazon links, prices, and explanation of importance of item Review outcome measure with site and faculty mentor 1/12 1/14 1/14 1/24 1/26 18 Drive to UIndy to 1/19 obtain assessment materials Begin OT assessments on new clients 4 5 Implementation Implementation Continue OT assessments on new clients Meet with OT at Dayton Childrens Hospital Continue OT assessments on new clients 6 Implementation Find further support for scholarly paper Continue OT assessments on new clients Establish routine with FI team Modify routine as needed Contact OT manager at Dayton Childrens Hospital Modify routine as needed Find additional research articles Modify routine as needed Determine how 1/24 many forms, if any, need to be purchased by MH Create assessment results spreadsheet Interpret assessment results Interpret assessment results 1/25 1/28 2/4 Create letter 2/3 template Prepare questions 2/7 for Zoom call Interpret assessment results 2/11 Write result letters Complete annotated bibliographies 2/11 Interpret assessment results 2/18 Write result letters 2/18 2/18 19 7 Implementation Find further support for scholarly paper Continue OT assessments on new clients 8 9 Implementation Implementation Find additional research articles Modify routine as needed Find further support for scholarly paper Find additional research articles Continue OT assessments on new clients Modify routine as needed Find further support for scholarly paper Continue OT assessments on new clients Find additional research articles Modify routine as needed Consult with mental health therapist Complete annotated bibliographies Interpret assessment results Write result letters Consult with mental health therapist Complete annotated bibliographies Interpret assessment results 2/18 2/25 2/25 2/25 2/22 3/4 3/4 Write result letters Complete annotated bibliographies 3/4 Interpret assessment results 3/11 Write result letters 3/11 Consult with mental health therapist 3/11 3/8 20 10 11 12 Implementation Implementation Implementation Plan Consult with sustainability for forensic site interviewers and site mentor Create a short sensory questionnaire Find further support for scholarly paper Find additional research articles Complete annotated bibliographies Continue OT assessments on new clients Modify routine as needed Interpret assessment results 3/18 Write result letters Clean facility 3/18 Commence Zoom calls 3/23 Begin preparing for site accreditation Practice necessary parts Find further support for scholarly paper Find additional research articles Finish OT assessments on new clients Modify routine as needed Dissemination presentation rough draft due Create presentation rough draft Complete annotated bibliographies 3/15 3/18 3/25 3/25 Interpret assessment results 3/25 Write result letters 3/25 Consult with mental health therapist Finalize supporting research 3/21 Meet with faculty mentor to practice 4/1 3/28 21 persuasive arguments Prepare for site accreditation 13 14 Discontinuation Dissemination Practice necessary parts Finalize sustainability Work with site mentor to ensure facility can continue sensory integration techniques in FI Prepare for and complete site accreditation Practice and complete necessary parts Present to CAC stakeholders Finalize presentation with site mentor Wrap up DCE Complete any small, last-minute things Clean facility 4/1 Commence Zoom 4/1 calls Finalize materials 4/4 staff can reference if necessary and set appropriate boundaries for assistance while off-site Clean facility 4/6 Commence 4/7 accreditation Zoom call Make 4/12 presentation visually appealing and engaging Create parting resources 4/14  ...

... VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 1 Addressing Visual Dysfunction Following Neurological Events at Community Rehabilitation Hospital North Rachel Cole May, 2022 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: Alissia Garabrant, OTD, MS, OTR VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 2 Abstract With the vastness of visual neural connections throughout the brain, an estimated 90% of individuals after a traumatic brain injury (TBI) and 60.5% of individuals after a cerebrovascular accident (CVA) experience visual deficits (Aravich & Troxell, 2021; Norup et al., 2016). Previous research indicates that despite high rates of patients with visual impairments following CVA and TBI, only between 54% and 63% of occupational therapists felt comfortable performing visual screening and providing interventions for clients with visual dysfunction (Winner et al., 2014). This project aimed to increase therapists confidence levels in addressing visual dysfunction following a neurological event through the establishment of assessment protocols and referral pathways to neuro-optometry, incorporation of additional resources and vision equipment, and therapist education. The results indicated an increase in therapists confidence level in assessing and addressing visual deficits by an average of 20.7% and 29.4% respectively. VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 3 Addressing Visual Dysfunction Following Neurological Events at Community Rehabilitation Hospital North With the vastness of visual neural connections throughout the brain, an estimated 90% of individuals after a traumatic brain injury (TBI) and 60.5% of individuals after a cerebrovascular accident (CVA) experience visual deficits (Aravich & Troxell, 2021; Norup et al., 2016). Eye movement disorders and unaddressed visual concerns can result in impaired hand-eye coordination, problems with scanning, increased risk of falls, reduced independence with daily activities and limited participation in meaningful occupations (Smith et al., 2018; Turton et al., 2018). According to Warren (1993), visual perceptual dysfunction is a major treatment focus following brain injury but is one of the least understood areas of evaluation and treatment by occupational therapists (OT). In a survey of 100 OTs, only 58% reported feeling comfortable with performing vision screening (Winner et al., 2014). Community Rehabilitation Hospital North (CRHN) is an inpatient facility that provides therapy and medical services to individuals with a broad range of diagnoses including spinal cord injury, TBI, CVA, and amputation. The facility received an advanced accreditation from the Commission on Accreditation of Rehabilitation Facilities in adult inpatient care, as well as their brain injury, stroke, and amputation specialty programs. In addition, CRHN earned the Joint Commissions Gold Seal of Approval for Amputation and Stroke Certification (Community Rehabilitation Hospital North, n.d.). However, CRHN currently does not consult with ophthalmology or optometry to supplement the care and therapy progress of their patients following a neurological event. The therapy team identified a need for improved visual rehabilitation protocols, resources, and patient education prior to and after discharge from their facility. The purpose of this project was to improve the comprehensive care of patients with visual dysfunction following a neurological event by making evidence-based assessments and VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 4 interventions more accessible, establishing referral pathways for neuro-optometry, and increasing therapists confidence with performing visual rehabilitation services. This paper provides a foundational knowledge about visual rehabilitation following a neurological event and outlines the project design, implementation, and outcomes, including justification for the guiding occupation-based model and frame of reference. Background OTs are non-vision specialists, but are typically the first to screen patients for visual impairments following a CVA or TBI, or notice dysfunction during completion of activities of daily living (Aravich & Troxell, 2021). However, recent studies have indicated a lack of formal visual assessment and inconsistency within hospital units regarding policies for visual assessments and referrals (Jarvis et al., 2012). In addition, despite high rates of patients with visual impairments following CVA and TBI, only between 54% and 63% of OTs felt comfortable performing visual screening and providing interventions for clients with visual deficits (Winner et al., 2014). As a collection, recent literature suggests the development of screening protocols for visual deficits within brain injury and stroke units and improved education for therapists, caregivers, and patients, providing a focus and purpose for this project. Due to the overt and physical manifestation of some deficits following neurological events including, but not limited to, mobility limitations and impaired functional use of upper extremities, vision and visual-perceptual deficits are easily overlooked, leading to negative impacts on participation and patient and caregiver frustration (Beaudoin et al., 2013). Appropriate and effective vision screening in an inpatient setting helps inform treatment planning and reduces risk of injury during and after the inpatient stay (Grider et al., 2014; Smith et al., 2018). In a descriptive study by Grider et al. (2014), findings indicated that one-third of patients in the rehabilitation hospital exhibited visual concerns, with the highest rate among patients with acquired brain injuries. While many practitioners currently rely on observation of VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 5 visual dysfunction during functional tasks or activities of daily living, this top-down approach may not clearly delineate specific areas of impairment that should be further targeted in treatment planning (Cooke et al., 2005). According to Warren (1990), developer of the visualperceptual hierarchy, evaluation results regarding vision can be misinterpreted when assessed top-down instead of bottom-up. Basic vision skills are critical to integrating visual information for effective higher-level visual functioning. Failure to recognize specific impairments could lead to ineffective treatment strategies, patient and caregiver frustration, and increased risk for injury (Warren, 1990; Smith et al., 2018). Based on this recommended bottom-up approach, vision screens should assess eye alignment, convergence, saccades, smooth pursuits, visual fields, acuity, and contrast sensitivity (Aravich & Troxell, 2018). Current literature identifies many shortcomings of vision screening and care following a neurological event including lack of standard vision procedures, inaccessible assessment tools and equipment, lack of implementation of evidence-based practices and screening, and length of current assessment tools (Vancleef et al., 2020). This project will address these limitations by establishing an evidence-based screening protocol that is suitable for bedside testing with accessible tools and ability to be completed in 15 minutes or less. In addition, vision screening leads to targeted referrals to specialists, including neurooptometrists and ophthalmologists. Unfortunately, many hospitals do not provide clear referral pathways and some providers prefer to wait six months for possible natural resolution of symptoms, despite present safety risks and patient frustration (Aravic & Troxell, 2021; Smith et al., 2018). In a survey of OTs regarding current practice, fewer than 45% of participants reported consulting an eye-care specialist or referred patients on a regular basis (Winner et al., 2014). Current guidelines and research recommends interprofessional collaboration between OT and neuro-optometry to improve comprehensive care for stroke survivors (Vancleef et al., 2020). Collaboration is necessary to determine how optometric interventions and optical devices impact VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 6 the long-term effectiveness of compensatory strategies and neuroplasticity-based interventions provided by OTs to maximize occupational performance (Blanchard et al., 2016). By testing functional vision through different modalities and under different conditions, providers can gain a better understanding of the severity of dysfunction and impact on quality of life (Roberts et al., 2017). Treatment planning developed by both vision and non-vision specialists support, integrate, and enhance visual processing and perceptual skills to optimize functional improvement in meaningful occupations (Roberts et al., 2017). Winner et al. (2014) indicated that therapist education should include content on strategies to identify local eye-care professionals and to form partnerships with them. In addition to education on local vision specialists, OTs must be demonstrate increased awareness of the existence of visual deficits and knowledge in assessing and using evidence regarding visual rehabilitation (Norup et al, 2016; Smith et al., 2018). Turton et al. (2015) identified lack of training as a barrier to management of visual problems following a stroke. Due to a lack of training, vision interventions delivered by OTs are not always aligned with current best practices, especially when dealing with oculomotor function and visual stress impairments (Yoo et al., 2020). A survey administered to inpatient OTs revealed utilization of the same interventions regardless if the patient had a visual field cut, reduced visual acuity, or oculomotor dysfunction (Yoo et al., 2020). In a randomized controlled trial, Jarvis et al. (2012) determined whether providing OTs with objective information from neuro-optometry evaluations would enhance functional recovery of stroke survivors. While the researchers did not find a difference in patient outcomes between the experimental and control groups, the researchers cannot indicate whether access to evaluation results did not yield improved outcomes or if therapists utilization and understanding of the information did not help. The lack of significant difference could be due to reduced therapist understanding of visual dysfunction and evaluation results. This project VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 7 focused on improving upon this research by providing therapists with specialized education on visual rehabilitation and collaboration with local vision specialists. Shortcomings in the literature were also reflected in the needs assessment conducted with CRHN OTs. In the needs assessment, questions regarding confidence levels were formatted on a Likert scale from one to 10, with 10 representing the most confident. Additional questions asked therapists to identify current practices and perceived need for resources. Based on survey results, 56% of respondents reported a five or less when identifying their confidence level with identifying visual deficits. In regards to confidence with both assessing and addressing visual deficits, 78% of respondents reported a five or less. Respondents also identified a unanimous desire for additional educational resources regarding visual deficits following neurological events to improve their confidence in identifying, assessing, and addressing visual dysfunction. The results from the needs assessment informed the focus on the project: education for therapists and establishment of visual rehabilitation protocols. Guiding Model and Frame of Reference Mary Warrens Visual-Perceptual Hierarchy Mary Warrens visual-perceptual hierarchy guided the development of visual rehabilitation interventions and assessment protocols. This developmental framework was created for individuals with an acquired brain injury and dictates a bottom-up approach to evaluation and treatment of visual-perceptual deficits (Warren, 1993). Each level in the hierarchy interacts and subserves each other; higher level skills, such as pattern recognition, evolve from the integration of lower level skills, such as oculomotor control. As a unit, all skills work together to integrate visual information efficiently and any disruption to the system impacts all skills higher in the hierarchy (Warren, 1993). The development of the protocols followed Warrens bottom-up approach to progress in sequence of integrated skills. In order to develop effective treatment plans and maximize function, visual-perceptual screening in acute or VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 8 rehabilitation settings following brain injury should be used as an important aspect of the process, especially for individuals whose goals include return to work, living alone, and return to driving (Cooke et al., 2005). By creating a protocol that includes screening and educating therapists on identifying lower-level dysfunction, CRHN can work toward identifying and reaching more patients and improving long-term outcomes. Person-Environment-Occupation Model To root this project in theory, the Person-Environment-Occupation (PEO) model was used to guide the implementation of vision interventions and communication with other members of the rehabilitation team. The PEO model focuses on maximizing the fit between the person, occupation, and environment to maximize functional performance (Cole & Tufano, 2008). Through this lens, modifications can be made to an individuals environment or occupations to adequately fit with his or her current visual-perceptual skills, progress toward the individuals goals, and produce improved functional vision. The model reflects the dynamic relationship between a client, their environment, and the task at hand, which helps all health professionals and caregivers recognize the complexity of the human experience and functioning (Strong et al., 1999). Project Project Design Based on the suggestions from current literature and the needs assessment, this project provided the OT teams with updated binders containing evidence-based vision screening tools, assessments, intervention ideas, and background information regarding the visual system and visual dysfunction following neurological events. The therapy teams identified a lack of confidence in their knowledge of and ability to assess visual dysfunction. In addition, they requested additional resources and occupation-based intervention ideas to implement in the inpatient rehab setting. To minimize visual distractions commonly experienced in the communal VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 9 therapy gym, an individual room was designated to be used for vision-based treatment sessions. The room was designed to contain all of the necessary supplies for vision screening and interventions. Lastly, this project emphasized the importance of interdisciplinary collaboration and including neuro-optometrists in the patients care plan through education to the therapists and development of referral pathways. To assess the outcomes of the project, a survey was developed for the occupational therapy teams that contained questions regarding therapist confidence level with different aspects of visual rehabilitation on a Likert scale. Project Implementation In order to implement the project and develop the binders, a narrative literature search using Academic Search Complete and CINAHL databases was conducted. Articles and information from the websites of established neuro-optometrists, American Stroke Association National Practice Guidelines, and an online vision rehabilitation course for occupational therapists was obtained. The information collected from the literature was used to defend equipment proposals to the therapy managers, referral pathways for neuro-optometry to the onsite physiatrist, and vision screening tools and interventions to the OTs. All aspects were well received, except the therapy mangers requested an alternative vision perception assessment than the one originally proposed. The literature recommended the Occupational Therapy Adult Perceptual Screening Test due to ease of administration and functional components, but the tool was inaccessible and had to be order from Australia. After further research, the Motor-Free Visual Perception Tool 4th edition (MVPT-4) was recommended and subsequently purchased. In addition to the assessment tool, evidence-based and occupation-based interventions were developed for oculomotor, accommodative, binocular, visual scanning, and visual perception dysfunction. The therapy team was educated on each intervention and possible modifications during two in-services. Instructions and recommendations for each intervention was also made accessible in the form of intervention cards, the intervention binder, and the therapy share drive. VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 10 All of the equipment was organized in the new vision room to provide a controlled environment for vision-based treatments (See Appendix B). Therapist education was also provided for administering and scoring the MVPT-4, oculomotor screening, and neuro-optometry referral pathways during the two in-services. Project Outcomes To evaluate the outcomes of the project, two surveys were sent out through Google Forms to collect pre and post-test data from the OTs at CRHN. Google Forms was chosen due to ease and accessibility. Each survey consisted of fewer than 10 questions to prevent lack of time commitment from being a barrier to data collection. Dichotomous questions inquired about absolute needs of the site and patient population, such as if the respondents believed additional vision resources would benefit the patient population. Likert scale questions addressed the confidence level of respondents in performing aspects of visual rehabilitation from one to 10, with 10 indicating most confident. The aspects included the ability to identify visual dysfunction, assess visual dysfunction, developing treatment plans or interventions to address visual dysfunction, and modifying treatment sessions based on visual dysfunction. Likert scale questions were chosen due to their ability to demonstrate potential improvement between the pre and post-test data. The pre-test was administered during week 1 and the post-test was administered during week 13 following both in-services. The average response was calculated for each aspect of visual rehabilitation in the pre and post-tests (See Appendix C). On average, the respondents indicated a 20.2% increase in confidence in identifying visual dysfunction and 20.7% increase in confidence in assessing visual dysfunction. In addition, the respondents indicated a 29.4% increase in confidence in developing vision treatment plans and 17.2% increase in confidence in modifying treatments plans based on visual dysfunction. In addition to the quantitative data, OTs provided qualitative feedback in an open-ended question in the post-test. The qualitative feedback included comments such as fantastic in- VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 11 service, great ideas to modify and adapt for specific visual deficits, and very beneficial information. The OTs were very accepting of the recommendations and expressed intent with utilizing the vision room and equipment. Summary According to Warren (1993), visual perceptual dysfunction is a major treatment focus following brain injury but is one of the least understood areas of evaluation and treatment by OTs. Recent studies have indicated a lack of formal visual assessment and inconsistency within hospital units regarding policies for visual assessments and referrals (Jarvis et al., 2012). As a collection, recent literature suggests the development of screening protocols for visual deficits within brain injury and stroke units along with improved education for therapists, caregivers, and patients. The needs assessment at CRHN revealed a unanimous desire amongst the occupational therapists for additional educational resources regarding visual dysfunction following neurological events to improve their confidence level in identifying, assessing, and addressing visual dysfunction. To address the shortcomings in the literature and needs of the site, this project developed vision protocols for assessing oculomotor and visual-perceptual dysfunction and referral pathways for neuro-optometry. In addition, this project focused on introducing new equipment and interventions for addressing vision. Lastly, two in-services were held to educate the therapists on new equipment, protocols, and referral pathways; in addition to how to modify tasks based on visual dysfunction severity. Following the in-services, a second Google Form was sent out to the OTs to collect post-test information. The results indicated an increase in therapists confidence level in assessing and addressing visual deficits by an average of 20.7% and 29.4% respectively. Conclusion Through research and implementation, this project provided the OT team at CRHN with educational resources and new vision equipment to implement vision-related assessments and VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 12 treatment plans for patients following neurological events. The educational resources gathered and developed included information regarding areas of the brain involved in vision, importance of addressing vision during inpatient evaluations, oculomotor and visual-perception assessments, importance of collaboration with vision specialists, and evidence-based interventions for visual deficits. The new equipment developed for the site included a visual guide for the Senaptec Sensory Station, Motor-Free Visual Perception Test 4th edition, oculomotor intervention supplies, activities for visual-perception skills, and explanations and documentation recommendations for more than 50 vision interventions. Oculomotor intervention supplies included glasses and opaque tape for occlusion, mirrors for eye exercises, red/green reading sheets and glasses, a vision tracking tube, Marsden balls, and HART charts. The information and products of the project were compiled into a vision room for therapists to access during treatment sessions and disseminated to the team through two in-service presentations. In the post-test survey, the CRHN therapy team unanimously agreed that the project was beneficial and addressed the needs of the site and patient population. The equipment and vision room will continue to be utilized by the OT team and will benefit future patients at CRHN. In addition, the in-service presentations and educational resources were uploaded to the shared drive for continued education and future employees to access. VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 13 References Aravich, D. & Troxell, L. (2021). Clinical practice guidelines for occupational therapists in the evaluation and treatment of oculomotor impairment following traumatic brain injury. Current Physical Medicine and Rehabilitation Reports, 9, 93-99. Beaudoin, A. J., Fournier, B., Julien-Caron, L., Moleski, L., Simard, J., Mercier, L., & Desrosiers, J. (2013). Visuoperceptual deficits and participation in older adults after stroke. Australian Occupational Therapy Journal, 60, 260-266. Blanchard, S., Chang, W., Heronema, A. M., Ramcharan, D. D., Stanton, K. L., & Stollberg, J. E. (2016). Common occupational therapy vision rehabilitation interventions for impaired and low vision associated with brain injury. Optometry & Visual Performance, 4(5), 265274. Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. SLACK Incorporated. Community Rehabilitation Hospital North. (n.d.). Community Health Network. https://www.ecommunity.com/locations/community-rehabilitation-hospital-north Cooke, D. M., McKenna, K., & Fleming, J. (2005). Development of a standardized occupational therapy screening tool for visual perception in adults. Scandinavian Journal of Occupational Therapy, 12, 59-71. Grider, S. L., Yuen, H. K., Vogtle, L. K., & Warren, M. (2014). Visual concerns that interfere with daily activities in patients on rehabilitation units: A descriptive study. Occupational Therapy in Health Care, 28(4), 362-370. Jarvis, K., Grant, E., Rowe, F., Evans, J., & Cristino-Amenos, M. (2012). Impact of visual impairment assessment on functional recovery in stroke patients: A pilot randomized controlled trial. International Journal of Therapy and Rehabilitation, 19(1), 11-22. Norup, A., Guldberg, A., Friis, C. R., Deurell, E. M., & Forchhammer, H. B. (2016). An VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 14 interdisciplinary visual team in an acute and sub-acute stroke unit: Providing assessment and early rehabilitation. NeuroRehabilitation, 39, 451-461. Roberts, P. S., Rizzo, J. R., Hreha, K., Wertheimer, J., Kaldenberg, J., Hironaka, D., Riggs, R., & Colenbrander, A. (2017). A conceptual model for vision rehabilitation. Journal of Rehabilitation Research and Development, 53(6), 693-704. Smith, T. M., Pappadis, M. R., Krishnan, S., Reistetter, T. A. (2018). Stroke survivor and caregiver perspectives on post-stroke visual concerns and long-term consequences. Behavioural Neurology, 1-8. Strong, S., Rigby, P., Stewart, D., Law, M., Letts, L., & Cooper, B. (1999). Application of the Person-Environment-Occupation model: A practical tool. Canadian Journal of Occupational Therapy, 66(3), 122-133. Turton, A. J., Angilley, J., Chapman, M., Daniel, A., Longley, V., Clatworthy, P., & Gilchrist, I. D. (2015). Visual search training in occupational therapy an example of expert practice in community-based stroke rehabilitation. British Journal of Occupational Therapy, 78(11), 674-687. Turton, A. J., Angilley, J., Longley, V., Clatworthy, P., & Gilchrist, I. D. (2018). Search training for people with visual field loss after stroke: A cohort study. British Journal of Occupational Therapy, 81(5), 255-265. Vancleef, K., Colwell, M. J., Hewitt, O., & Demeyere, N. (2020). Current practice and challenges in screening for visual perception deficits after stroke: A qualitative study. Disability and Rehabilitation, 1-10. Warren, M. (1990). Identification of visual scanning deficits after cerebrovascular accident. American Journal of Occupational Therapy, 44(5), 391-399. Warren, M. (1993). A hierarchical model for evaluation and treatment of visual perceptual dysfunction in adult acquired brain injury, part 1. American Journal of Occupational VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS Therapy, 47(1), 42-54. Warren, M. (1993). A hierarchical model for evaluation and treatment of visual perceptual dysfunction in adult acquired brain injury, part 2. American Journal of Occupational Therapy, 47(1), 55-66. Winner, S., Yuen, H. K., Vogtle, L. K., & Warren, M. (2014). Factors associated with comfort level of occupational therapy practitioners in providing low vision services. American Journal of Occupational Therapy, 68(1), 96-101. Yoo, P. Y., Scott, K., Myszak, F., Mamann, S., Labelle, A., Holmes, M., . . . Bussieres, A. E. (2020). Interventions addressing vision, visual-perceptual impairments following acquired brain injury: A cross-sectional survey. Canadian Journal of Occupational Therapy, 87(2), 117-126. 15 VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 16 Appendix A Week DCE Stage 1 Orientation Weekly Goal Complete orientation and site-specific paperwork Initiate needs assessment and review of site equipment Objectives Tasks Meet with site mentor, other site personnel, and the site participants to introduce myself and educate them on the purpose of my capstone Develop a supervision/weekl y schedule with my site mentor Acquaint self with documentation program Review current vision binder and current equipment 2 Screen & Evaluation Complete needs assessment by end of week Review literature for vision deficits post-brain injury and vision protocols 3 Implementation Continue review of literature for vision deficits post-brain injury and vision protocols Establish pre and post-test measures Compare literature search to literature found in current vision binder Continue reviewing current vision binder and current equipment Compile relevant literature in new vision research binder Continue accessing Date complete 1/14 Finalize MOU Develop survey for needs assessment Take online vision rehab course Collect vision notes from FWII A (worked with neuro-OD and vision deficits for mTBIs) Review first floor equipment and vision supplies Disseminate pretest to therapy team via email 1/21 Search databases for vision-related literature Review second floor equipment and vision supplies Meet with on-site doctor to discuss current referral pathways Print and organize literature materials in binder Take notes/highlight 1/28 VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS databases to search for visionrelated literature 4 Implementation Initiate development of new vision protocols Complete review of literature for vision deficits post-brain injury and vision protocols Brainstorm ideas for the new vision binder and how to incorporate current material and new research Initiate collection of neuro-OD information 17 articles while reading Make visual for areas of the brain impacting vision Write-up information about functional areas of the brain for vision Summarize findings in each research article 2/4 Create table of contents for easy review of literature in vision binder Develop an outline for the vision binder and how to incorporate information Reach out to local outpatient vision rehab centers and neuro-ODs for information regarding continuation of care 5 Implementation Continue development of vision protocols and assessment binder Develop assessment protocols for oculomotor screening Condense research finding on importance of assessing vision Reach out to appropriate manager to schedule inservices and meeting to discuss equipment Type up document outlining suggestions for occupational profile, ADL observation, oculomotor screening, and Brain Injury Vision Symptom Survey 2/11 VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 6 7 8 9 Implementation Implementation Implementation Implementation Continue development of vision protocols and assessment binder Explore continuum of care/interdisciplin ary collaboration Continue exploring continuum of care and compare research to conversations with local providers Establish equipment that will be utilized in vision room Start development of intervention binder Finalize neuro-OD list Start working on protocol for visual-perception assessment Expand collection of information to include interviews from OTs and neuro-ODs Finalize research on assessment tools and evidence-based vision equipment Determine what interventions can be DIY-ed and what should be ordered Meet with therapy manager to review information Review literature and search for vision interventions to include in binder 10 Implementation Continue developing plans for vision Work on development of DIY interventions 18 Print BIVSS forms Finalize neuro-OD 2/18 document and send to Dr. Lyon for approval Research visualperceptual assessment tools Meet with local outpatient therapists to discuss experience with vision Shadow 2 neuroODs and ask questions about interdisciplinary collaboration Make a list of equipment to order to present to therapy manager with price and purpose Create document for meeting outline 2/25 3/4 3/11 Present equipment list and project/vision room vision to therapy manager Find and print paper worksheets such as mazes, HART charts puzzles, word searches, connect the dots for intervention binder Write up descriptions of interventions for 3/18 VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS interventions based on literature and intervention binder 19 intervention binders Complete DIY interventions Complete intervention rings (include documentation, explanation, modifications, supplies) Order MVPT-4 11 Implementation Initiate development of new vision room Gain understanding of new visualperception assessment tool Shadow Community outpatient vision/neuro OT Clean room and clear out current equipment 3/25 Develop a visual plan outlining the layout and purpose of each area in the vision room Create guide for Senaptec Sensory Station 12 Implementation /Dissemination Initiate transition of vision room Conduct first inservice Disseminate project Continue setting up vision room Review MVPT-4 manual and condense information into a handout for therapists Create PPT presentation for inservice Finalize assessment binder Present PPT over neuro-OD referrals, oculomotor assessments, and vision dysfunction following 4/1 VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 20 neurological events 13 Dissemination Disseminate project Conduct second in-service Develop post-test Develop post-test outcome measure via Google form Work on vision room Continue making modifications and additions to vision room Make labels and organize material and equipment in the vision room Create PPT presentation for inservice 4/8 Gather supplies for in-service to showcase new equipment Present PPT over visual-perception assessments and vision interventions Develop questions for post-test Finalize intervention binder 14 Dissemination Disseminate project Continue dissemination process for future implications Finalize outcome assessment/evaluat ion of project Finalize vision room Complete final evaluation of project with site mentor to ensure project met site needs/expectations Send out post-test to OTs Analyze post-test data and compare to pre-test data Organize project documents into files Upload all educational resources and vision room/intervention information on share drive Finish putting up anchors, intervention cards, and HART charts on wall in vision room. 4/15 VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS Finish evaluations on CORE 21 VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 22 Appendix B Vision Room Components Figure B1 Vision Intervention Cards Note. Each card provided instructions for an intervention, supplies, possible modifications, and documentation recommendations. The image also showcases the vision tracking tube and list of local neuro-optometrists. Figure B2 Vision Supplies VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS Note. Supplies and interventions were organized by purpose and labeled accordingly. Figure B3 Senaptec Guide Note. A visual guide was created for therapists to reference during treatment sessions with the Senaptec Sensory Station. 23 VISUAL DYSFUNCTION FOLLOWING NEUROLOGICAL EVENTS 24 Appendix C Therapists Confidence in Performing Visual Rehabilitation Clinical Areas Identifying Visual Dysfunction Assessing Visual Dysfunction Developing Treatment Plans to Address Visual Dysfunction Modifying Treatment Plans based on Visual Dysfunction Pre-Test Average 5.11 4.56 4.56 Post-Test Average 7.13 6.63 7.5 Percentage Difference 20.2 20.7 29.4 5.78 7.5 17.2  ...

... LIVED EXPERIENCES OF CAREGIVERS 1 Research Project Describing the Lived Experiences of Caregivers of Children with Disabilities receiving Occupational Therapy Services during the COVID-19 Pandemic Allison J. Cattin, Grace E. Cho, Hannah K. Droste, Darby B. Joerling, Kayla R. Nowlin, and Sara M. Panczyk December, 01, 2022 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Jennifer L. Fogo, PhD, OTR LIVED EXPERIENCES OF CAREGIVERS 2 A Research Project Entitled Describing the Lived Experiences of Caregivers of Children with Disabilities receiving Occupational Therapy Services during the COVID-19 Pandemic 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: Allison J. Cattin, Grace E. Cho, Hannah K. Droste, Darby B. Joerling, Kayla R. Nowlin, and Sara M. Panczyk Doctor of Occupational Therapy Students Approved by: 1/8/2023 Research Advisor: Jennifer L. Fogo, PhD, OTR Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date LIVED EXPERIENCES OF CAREGIVERS 3 Describing the Lived Experiences of Caregivers of Children with Disabilities receiving Occupational Therapy Services during the COVID-19 Pandemic Jennifer L. Fogo, Allison J. Cattin, Grace E. Cho, Hannah K. Droste, Darby B. Joerling, Kayla R. Nowlin, and Sara M. Panczyk School of Occupational Therapy, University of Indianapolis LIVED EXPERIENCES OF CAREGIVERS 4 Abstract During the pandemic, school-aged children with disabilities abruptly lost access to traditional occupational therapy services (McFayden et al., 2021). Cacioppo et al. (2020) surveyed 1000 participants and reported that only 27% of children continued traditional therapy, and 77% continued therapy services through parents' provision. This occurred when many caregivers were forced to work from home and provide education for their children. Additional role responsibilities, along with other significant changes in routines, can increase demands on parents' mental health. The purpose of our study was to describe the lived experiences of parents of children with disabilities receiving occupational therapy services during the COVID-19 pandemic. We utilized a phenomenological qualitative research approach and interviewed four caregivers of children receiving occupational therapy services prior to and into the pandemic lockdown. Following the analysis procedures described by Saldana (2013) we explored the data for emotion, process, and in-vivo codes. The participants described a process that included (a) Meeting the needs of the child pre-COVID to (b) adjusting to small changes to (c) adapting to fit the new environment to (d) meeting the needs of the child differently. The primary emotion themes that emerged from the data included two broad categories. The first category includes the emotions of feeling Anxious/worried, Overwhelmed, Guilty, and Frustrated as they described multiple stressors due to the pandemic. However, regardless of the negative emotions they experienced, they consistently expressed feelings of gratitude and appreciation towards occupational therapy services and their occupational therapist. LIVED EXPERIENCES OF CAREGIVERS 5 Describing the Lived Experiences of Caregivers of Children with Disabilities receiving Occupational Therapy Services during the COVID-19 Pandemic The COVID-19 pandemic has disproportionately impacted children with disabilities and their parents (Children with disabilities and Covid-19, 2021). Prior to the pandemic, 7.1 million school-aged children with disabilities within the U.S. engaged in special education services, including physical therapy, occupational therapy, and speech-language pathology through the Individuals with Disabilities Education Act (United States Government Accountability Office, 2020). During the pandemic, school-aged children with disabilities abruptly lost access to therapy services. Cacioppo et al. (2020) analyzed surveys from 1000 participants and discovered only 27% of children with physical disabilities could continue traditional occupational therapy, while 77% continued therapy services through parents' provision. This change became a primary concern of parents with the added roles and responsibilities to provide the services themselves (Cacioppo et al., 2020). Individuals with disabilities are often marginalized, and the unique needs of parents of children with disabilities are often overlooked or not understood (GPE Secretariat, 2016). Even though professional experts have suggested ways to remedy some of the parents' hardships during the pandemic, researchers have not thoroughly examined the lived experiences of parents with children with disabilities who received occupational therapy services during the pandemic. We utilized a qualitative research methodology with a transcendental phenomenological approach to provide caregivers of children with disabilities the opportunity to share their experiences during this unprecedented time. Understanding caregivers experience duing this time may provide occupational therapists insight into how caregivers cope and adjust to abrupt change in their childs services. Occupational therapists can then use this information to learn how they might assist caregivers during such change. LIVED EXPERIENCES OF CAREGIVERS 6 Literature Review Parents experiences of transitioning occupational therapy services to at-home and online telehealth programs due to the recent COVID-19 pandemic have lacked attention. After reviewing multiple databases, we found a limited number of articles with supporting research on this topic. We appraised the articles to be primarily at level V with most of the articles presenting anecdotal reports from professional experts working in the field and parents of children with disabilities. We found that the main focus, within the minimal research studies we examined, was that researchers focused primarily on access to therapy, parents perceived effectiveness of services provided (Jeste et al.,2020; White, 2021), and suggestions about ways for parents to maintain mental health and support (Grumi, 2020; Priyadharshini & Chiang, 2020). Experts have also indicated that parents of children with disabilities experienced increased social isolation and excessive mental health demands (Asbury, 2020; Payne, 2020; Masonbrink & Hurley, 2020). To fully encapsulate the lived experiences of parents, we utilize the occupation-based model, Ecology of Human Performance (EHP), to guide our research. This model emphasizes the importance of contextual factors on one's task performance (Cole and Tufano, 2020). The EHP model is depicted by a diagram where ones context represents a lens of how their environment either facilitates the number of tasks theyre involved in, their performance range, or limits them. The performance range is defined as the amount of tasks available to the individual, in relation to their context and their own skills and abilities. Applying the EHP model to our research, we viewed the parents context as their home and working environments which include their child with a disability. Based on their own skills and abilities, this model helped guide how these environments with their child with a disability influence their performance range or the tasks they have available to them such as daily living activities of cooking, etc. Access to Therapy Services and Changes in Therapy Delivery LIVED EXPERIENCES OF CAREGIVERS 7 Parents access to therapy services were greatly impacted when schools and other service providing settings shut down. Jeste et al. (2020) reported that, Seventyfour percent of parents reported that their child lost access to at least one therapy or education service, and 36% of respondents lost access to a healthcare provider. Only 56% reported that their child received at least some continued services through teleeducation. With this shift to telehealth, therapists were required extra training for this new delivery method as well (Priyadharshini & Chiang, 2020). As the pandemic continued, McFayden et al. (2021) further reported the discontinuation of occupational therapy services. The authors found 65%-83% of students no longer had therapy services at all (counseling, speech, physical and occupational therapy). Parents Perceived Effectiveness of Services Provided When services shifted to telehealth, and caregivers were exposed to these services more overtime, there was an increase in family involvement with their child during therapy (Priyadharsini & Chiang, 2020). This demonstrates transactional contextualism through the Ecology of Human Performance (EHP) occupation based model which is a factor that shapes ones occupations based on their extended time in an environment. The EHP model further provides the perspective of intrinsic motivation which can be supported by the research findings that parents are furthering their involvement by being educated and developing skills for their childs services (Priyadharsini & Chiang, 2020). Along with this greater involvement, caregivers reported this delivery method via telehealth as being helpful due to the 1:1 or 2:1 with the OT and child (possibly with parent), which was beneficial to their child and themselves (Jeste et al., 2020). On the other hand, caregivers of children in preschool reported that their child would lose focus when on the computer, and they believed that some in-person interventions are required to make them effective (White et al., 2021). Allison & Levac (2022) surveyed 402 parents of LIVED EXPERIENCES OF CAREGIVERS 8 children with disabilities and found that over 40% of them accredited these changes in therapy services for their childs declines in their motor, behavior, social, and communication skills. Support for Parents and their Mental Health Many parents of children with disabilities have expressed concerns about their childs growth and development during the pandemic due to a lack of specialized rehabilitation (Grumi et al., 2020). According to Grumi, it has caused parents to feel stressed, unsupported, and it has impacted their mental health. Parents report they are experiencing more anxiety and depression because they believe that they will not deliver proper services for their child in comparison to a therapist, causing their child to fall behind (Grumi et al., 2020). Provenzi et al. (2021) conducted a quantitative study that consisted of 36 parents who discussed the impact of telehealth programs that aided their children with rehabilitation during COVID-19. With the help of these programs, the majority reported increased feelings of engagement, self-relevance, perceived support and recognition of their role in child care, with percentages ranging from 86%95%. (Provenzi et al., 2021). Many families of children with developmental delays have experienced disparities including limited access to medical care, food, and inadequate housing. Due to these struggles, parents experience an increase in stress and decrease in mental stability (Paulauskaite et al., 2021). When a parent struggles with poor mental health, it can impact how well they provide for their child. In the study conducted by Paulauskaite et al. (2021), 66% of 88 parents reported mental health challenges and indicated that they could not adequately support their family due to their mental health status. After, juggling the demands of work, virtual schooling, and restless children amidst intense isolation and poor social support do not make for better parenting. They create stress, irritability, and guilt, which can lead to greater mental health problems, chaotic home environments, and the potential for harsh parenting (Murphy et al., 2021). LIVED EXPERIENCES OF CAREGIVERS 9 To aid in this issue, occupational therapy practitioners in Singapore created telehealthbased occupational therapy sessions, online parent workshops, and online community outreach. These same occupational therapy practitioners collaborated with psychologists to provide emotional support for parents to ensure the childs best at-home care while receiving therapy remotely (Priyadarshini & Chiang, 2020). The results of these implementations were that telehealth and online services could be complementary to other service deliveries. There are a lot of negative perceptions of online services from parents and caregivers that would have to be adjusted moving forward to continue making therapeutic deliveries safe and effective (Priyadarshini & Chiang, 2020). Conclusion Based on the literature, the adaptations to services, such as telehealth, have been a guiding tool for occupational therapist practitioners and many other medical professionals throughout this pandemic (Priyadarshini & Chiang, 2020). In turn, it has brought on additional stress and anxiety for parents and caregivers at home who are now taking on a new responsibility for their childs services. Some parents believe telehealth and other virtual treatments cater to children with specific disabilities (White, et al., 2021). Many occupational therapy practitioners have adjusted how they treat their clients to serve the needs of the child best. There is hope for additional strategies to be created by occupational therapy practitioners and other healthcare professionals to support parents/caregivers in the future to aid in these remote occupational therapy services (Grumi et al., 2021). It is still unclear if the adaptations already made by occupational therapy practitioners were beneficial in providing parents with what they needed to support their child. Having a better understanding of the parents lived experience during the pandemic will help occupational therapy practitioners determine what additional strategies need to be investigated moving forward. White et al. (2021) stated, Additional research is needed to LIVED EXPERIENCES OF CAREGIVERS 10 develop interventions that can be adapted and delivered remotely to various age groups. Such efforts may have the added benefit of helping to address disparities documented in rural and other underserved communities. The current research supports the needed improvement to the at-home virtual approach and further development of interventions and resources for this emerging population. Method Study Approach/Design We conducted a transcendental phenomenological research study to determine the lived experiences of caregivers of children with disabilities who received occupational therapy services prior to and into the shutdown caused by the COVID-19 pandemic. The children needed to have been receiving occupational therapy services before March 2020 when the United States Federal Government declared a national emergency due to the COVID-19 pandemic (AJMC, 2021), and they continued to receive occupational therapy for any length of time throughout the time of data collection in the Fall of 2021. We utilized the theoretical framework of Ecology of Human Performance (EHP) designed by Dunn, Brown, and McGuigan (1994) for various practice disciplines, including Occupational Therapy. This theoretical model provided a framework that examined how context (i.e., COVID-19 pandemic) influenced the caregivers engagement and performance in daily tasks associated with their child's care and participation in occupational therapy services (Cole & Tulfano, 2020). We examined the data through the EHP lens by exploring the transactional contextualism and the environmental press through the longterm and short-term effects of COVID-19, respectively. Recruitment Procedures According to Creswell (2013), phenomenological research typically includes between 5 to 25 participants. We intended to recruit between 5 and 10 caregivers of children with a LIVED EXPERIENCES OF CAREGIVERS 11 disability who received occupational therapy services prior to and into the pandemic caused by COVID-19. At the time of recruitment, the researchers planned to obtain a diverse sample by inviting those who demonstrated varied demographics of either race and ethnicity, employment status, marital status, age, disability of the child, or the setting in which the child received services. However, we were only able to recruit four participants who were caregivers of children with a disability that attended at least five occupational therapy sessions prior to March 2020 and continued occupational therapy services through data collection that occurred in the Fall of 2021. This ensured that all of the caregivers experienced a common phenomenon of having a child with a disability who needed to continue occupational therapy services during the pandemic. Our objective was to capture a broad perspective of the lived experiences of caregivers who had a child with a disability receiving occupational therapy during the pandemic. Therefore, we used purposive sampling to obtain participants with maximum variation based on race and ethnicity, employment status, marital status, child's age or disability, or the children's setting receiving occupational therapy services before the onset of the pandemic. We also used a convenient sampling technique by virtually distributing informational flyers through local occupational therapists, therapy organizations, Community Patient Resource Group of the University of Indianapolis. We also emailed caregivers who met the inclusion criteria and posted information about our study on social media sites, such as Facebook. We used the snowball sampling technique and asked the participants to pass the information on to other caregivers who met the criteria and might be interested in participating in the study. Even though we used multiple recruitment procedures, we were only able to secure four caregivers who met the inclusion criteria. This limited our ability to obtain a diverse sample. When individuals contacted the primary investigator indicating they were interested in participating, the primary LIVED EXPERIENCES OF CAREGIVERS 12 investigator reviewed details of the study over the phone and answered questions. If the caregiver was still interested in participating in the study, the primary investigator collected demographic information (Appendix A) from the participants and set up a convenient date and time for participants to be interviewed virtually using Zoom (Zoom Video Communications Inc., 2016). Data Collection Procedures Three researchers were present virtually during the interview. One researcher facilitated the interview with a semi-structured interview guide. The other researcher recorded field notes to capture participants' non-verbal responses and noted potential follow-up questions to clarify the participants' responses when needed. The third researcher documented a summary of the responses and verified the content with each participant immediately after the interview. This provided the participants the opportunity to clarify or refute their responses to the questions. Each interview lasted between 30 and 60 minutes. Before initiating the interview, the interviewer verbally reviewed the informed consent document, answered questions, and obtained verbal consent from the participant. This consent process was recorded with Zoom (Zoom Video Communications Inc., 2016). Each participant was assigned a participant code to eliminate the use of participant names and maintain confidentiality. The researchers developed the semi-structured interview guide using grand tour and mini-tour questions described by Spradley (1979). Spradley (1979) suggested that an interview begins with grand tour or mini-grand tour questions that are broad and open-ended, allowing participants to describe their experiences fully. The grand tour questions were followed by more open-ended questions, per Spradley's (1979) recommendation, which helped participants narrow the focus to describe the details of their experiences. After the interview guide was developed, we completed a practice interview with a colleague who was a caregiver of a child who was LIVED EXPERIENCES OF CAREGIVERS 13 receiving occupational therapy services during the pandemic. This allowed us to adapt the interview procedures using Zoom and revise the interview guide as appropriate based on feedback from the practice interview. Using the adapted semi-structured interview guide allowed us to ask further questions about the information shared by the participants, yet ensured that the researcher asked all participants similar questions. All interviews were recorded through Zoom, which included audio, video, and automated transcripts. The recorded interviews were saved in a password-protected laptop and in a Google drive folder that was only accessed by the researchers. There were technical difficulties in the first interview with participant 1, which caused the automatic transcript not to save. Therefore, three research members transcribed the interview by hand, typing the interview into a Google document. Each team member reviewed the interview and the hand-typed transcription for accuracy. Automated transcripts were correctly saved for participants 2,3, and 4. Data Analysis After we completed each virtual interview, we downloaded the Zoom recordings using automated transcripts. Two researchers who were not involved in the interview process reviewed each transcript and compared it to the recorded interview to ensure the verbatim accuracy of the transcripts. Starting with the first participant, the researchers independently re-read and precoded the transcript. Saldana (2013) describes pre-coding as "circling, highlighting, bolding, underlining, or coloring rich or significant participant quotes or passages. Then each researcher independently added memos to their copies of the transcript to identify relevant details about the participant (Saldana, 2013). To analyze the data, the researchers followed a process of first and second-cycle coding described by Saldana (2013). The team of researchers met and worked together to generate the first cycle process, emotion, and in-vivo codes for participant number 1. Process codes were identified to capture the actions of the participants in response to the LIVED EXPERIENCES OF CAREGIVERS 14 COVID-19 pandemic. Process codes can help discern actions and interactions used to identify solutions to resolve problems brought on by external conditions (Woodet al., 2010). We wanted to describe what the participants did in response to the pandemic. The onset of the pandemic brought about many unknown factors which heightened peoples reactions and emotions. Therefore we believed it was important also to capture how the participants felt during the pandemic by identifying emotion codes. Also, during the first cycle coding, it was essential to use the participants own words to ensure we were describing their experiences. To complete the first cycle coding, we created a table with a column for each type of code. As a group, we went through the first transcript line by line to extract process, emotion, and in-vivo codes and entered them into the table along with the line number in the transcript. This allowed us to establish consistency with coding among the research team members. We then continued working as a team of researchers and combined similar first-level codes into broader categories to establish second cycle process, emotion, and in-vivo codes. During the second coding process, our research team completed and reviewed the coding of the transcript of Participant 1 as a group. We then divided into smaller groups of three researchers to complete the first and second-cycle coding of the transcripts of participants 2 and 3, and 4. The final second cycle codes were further reviewed by three other research team members and all final codes were reviewed by the primary researcher, matching the codes to the initial transcript. This process ensured consistency among all the researchers during code development and ensured that the codes accurately reflected the participants' data. Next, researchers conducted a cross-case analysis by combining and regrouping the secondary codes from all the transcripts to develop overall process and emotion themes describing the lived experiences of caregivers of children with disabilities who received occupational therapy services during the pandemic. We used the preliminary in-vivo codes to LIVED EXPERIENCES OF CAREGIVERS 15 strengthen the process and emotion codes by using the words of the participants to describe the themes. We used Google Docs to create the code tables. The code tables were saved as an audit trail capturing the changes we made throughout the analysis process. Prior to and throughout the analysis process, each researcher maintained a reflexivity journal, documenting personal experiences of working with children with disabilities and their families, as well as other personal experiences during the shutdown caused by the COVID-19 pandemic. This was used to help reduce researcher bias during data collection and analysis. Findings The purpose of our study was to explore the experiences of caregivers who had children with a disability receiving occupational therapy services prior to and into the pandemic. We interviewed four female participants, three participants were mothers, and one participant was a grandmother caring for a child with a disability. See table 1 for a full description of each participant. The children were between the ages of 7 and 13 years old and had received occupational therapy services for a lengthy period of time prior to the onset of the pandemic (See table 2 for a description of the children receiving care from the participating caregivers.) Each caregivers life circumstances prior to the onset of the pandemic played a substantial role in their experiences of caring for a child who received occupational therapy during the pandemic. We have provided a brief description of these life circumstances in table 1. Process Themes: What they did The participants described their daily routines and life experiences prior to the pandemic, during the lockdown in March of 2020, and their daily routines at the time of data collection, which was in the Fall of 2021. This was approximately 18 months after the initial shutdown. We used this data to inform the processes the participants went through during this time. The process LIVED EXPERIENCES OF CAREGIVERS 16 themes that emerged depicted four clear stages of change for the participants, which included: (a) Meeting the needs of the child pre-COVID, (b) Adjusting (small changes), (c) Adapting to fit the new environment, and (d) Meeting the needs of their child differently. The participants also described several consistent and specific activities they engaged in during each stage in the overall process. (See figure 1). Figure 1 Process Themes Meetingthe Needs of their Child Pre-COVID The caregivers described well-established daily and weekly household activities prior to the lockdown caused by the COVID-19 pandemic that ensured they were supporting the therapeutic needs of their child. They described three primary ways they met the needs of their child pre-COVID-19, which included regularly taking their child to therapy services, having therapy equipment at home to use with their child to reinforce therapy services when the child was at home, and having a supported and organized routine. LIVED EXPERIENCES OF CAREGIVERS 17 Each participant clearly described a weekly routine that included regularly scheduled occupational therapy services for their child. All of the children began receiving occupational therapy through early intervention services with two of the caregivers indicating their child started receiving occupational therapy at birth. The participants described having a busy schedule balancing occupational therapy services with other family and child activities such as school, physical therapy, speech-language pathology, and the caregiver(s) work schedule. Several of the participants also reported that they chose to receive outpatient OT services beyond the occupational therapy that their child was receiving within the school system, indicating they did not believe all of their childs occupational therapy needs were being met through the school system.. Even though the schedules were busy, the caregivers did what they needed to do to make sure their children received the services they needed. For example, participant 2 scheduled all of their childs therapy services one day a week during the school day: She would get [therapy on] Thursdays and we had called it Therapy Thursday. We had PT and OT back to back, came home, ate lunch, and then we went to speech therapy she loved it. Participant 3 also took their child to therapy one day a week after school: then, when he comes home, you know he'll have a snack he loves looking at uh playing games on his tablet. He goes once a week to occupational and physical therapy. Participant 1 reinforced the importance of having therapy-based equipment at home: Im mildly obsessed with having stuff and activities that he can doWe have right here theraputty, these thingsI ordered a bunch of stuffbeads and stuff While participant 2 remained involved in various local programs to engage the child in various formats: We were connected with Down Syndrome Indiana, we do a learning program so always kind of just reinforcing skills, whether it's school, social, OT, PT, speech, whatever through play and LIVED EXPERIENCES OF CAREGIVERS 18 activities and connection. The participants understood how to reinforce their childrens therapeutic goals and created ways to make that happen at home. Each caregiver described an established daily and weekly routine to support their childs needs. Participant 4 described their routine before COVID as: Prior I mean everything was going like a well oiled machine, you know they were working on things. Participant 1 explained a thorough morning routine Were close to the school. I leave the house to take him to school at 8:30 were always there a little early. It's just easier to leave at that time dad gets him up... Hell feed him breakfast. Theyll do a puzzle during breakfast, and he loves magazines so he likes to look at it and flip through those. And then brush his teeth and medicine and dressed and out the door. Participant 3 described their morning routine, reporting that, my husband does most of getting him ready for school and you know he eats breakfast and then he goes to school he loves school. Adjust (small changes) During the next phase of the process, at the onset of COVID-19, the participants began to adjust to a new lifestyle. They described having to gain a deeper understanding of their child and their occupational therapy goals. They also shared how they made adjustments and adaptations to their prior routines and roles. Due to the shut down caused by the pandemic, the participants reported that they now spent the majority of their time at home. Participant 2 reported life went from this routine that I told you about of what we did, every day, and everybody went to their place, and then we came back as a family and just all sorts of stuff, and then suddenly it was pretty much [the child] and me 24 hours a day. LIVED EXPERIENCES OF CAREGIVERS 19 Additionally, participant 2 shared how they created a new routine at home I actually made an activity schedule for us every day And you know she could check it off, and she can kind of dictate what we did, but that way, we had some kind of routine or schedule versus just uhhh were bored at the house, What are we gonna do? Several of the caregivers also reported that because they were forced to be with their child most of the time, they discovered new activities, different food, and more interests that their child enjoyed. For example, participant 4 explained that she discovered her child loved eggs and tomatoes and she also figured out a way to integrate his occupational therapy goals through cooking this new-found meal, she said it was just trying to find new inventive ways to try to get therapy in without him knowing we were doing therapy. They reported that they had to understand their childs occupational therapy goals and have a better understanding of how occupational therapy was meeting their childs goals. Participant 3 stated, I feel like I learned as much as [the child] does as far as you know, like it was her idea that he learned to fold laundry. Even with services shifting online, participant 2 affirmed this by stating, There's not any replacement value for being in person with an OT with their hands and their brain and their care and their connection, but I think it actually translates fairly well to an online platform. Along with this appreciation of OT came more involvement with the services and additional roles that participants began to take on. Participant 1 indicated we did everything. I became his all of those therapy sessions I was telling you about? He kept them all, but I did them. hours a day and So yeah, I was wearing all of the hats. Adaptations to Fit the New Environment LIVED EXPERIENCES OF CAREGIVERS 20 These small adjustments soon became adaptations to better suit participants' new situations. We identified four main adaptations within this phase of the process, the overall COVID-19 shutdown and precautions that came along with it, isolation at home and from others, services shifting online, and purchasing at-home therapy equipment. Participant 4 said it was the second week and the third week and on, that became worse because. Not only that, he wasn't allowed to go into restaurants or anything like that, we still do some drive through, but he was sit and cry he was a good boy he cried I good boy I good boy. And Id be like it's not you bubby it's the restaurants are sick. They described their isolation from other family members by stating, she herself was medically fragile And stuff and we didn't see her for Thanksgiving, we saw her for Wigilia, which is a Polish Christmas on Christmas Eve, that was the first time Ive seen my sister since um since October And stuff. Participant 1 also commented about feeling isolated and alone A lot of it was hard. Because now we went to having a team of people and giving us a break to now being full-time with everything. Several participants isolated themselves due to medical precautions caused by the risks associated with COVID-19 and they had to shift therapy services to online. Some participants enjoyed this change and adapted to this conversion. Participant 2 stated, [the child] did well with it and it worked fine for her, and I think it was a good thing for her to be able to be connected, even just visually, to somebody besides me. On the other hand, Participant 4 did not see the benefit of online services stating virtual OT were offered, however. They I mean they wouldn't have done any good. Because like I said the attention span and for him to sit and have someone especially a LIVED EXPERIENCES OF CAREGIVERS 21 therapist to sit there and try to tell us how to do something and to work with him on certain things. I mean you could try but it's not going to work out the way you want it to. As these services shifted online, some of the participants adjusted to these new conditions through buying new therapy equipment to provide therapeutic intervention in a new virtual environment. Participant 1 commented we took a room in our basement and we found online and purchased a therapy swing, like the one that looks like a hammock. Because we were doing the sessions and it so hard to keep him interested and for me to feel like I was doing a good job. Umm...We also got one of those big bolsters. Participant 4 also supported this adjustment by stating We ordered a peanut for him to bounce on and do some activities. we also ordered a two pound weighted ball. To help him with tossing and like Bowling and stuff like that, for more accuracy and build up that upper body strength and, of course, climbing his bounce house which had a slide and we had work on that because he does not have the upper body strength. I bought a great big whiteboard for him to use for writing and stuff like that. The participants adjusted to their new environment after the shut down as therapy services shifted to online by buying therapy equipment to help their child as best they could because they were the only ones who were available to help. Meeting the Needs of their Child Differently As COVID-19 continued with constant unknowns of what the future would look like, families had to change their roles from being only caregivers to providing occupational therapy LIVED EXPERIENCES OF CAREGIVERS 22 services for their child. Caregivers had to adjust their routines and adapt to their environments, but also strive to meet the specific and unique needs of their child. This included becoming the at-home occupational therapist, protecting their child from the COVID-19 illness, and learning new technology for services via telehealth. Due to this huge learning curve, caregivers admitted to struggling to take on so many roles and responsibilities. Struggles varied from participant to participant. Participant 1 expressed, Struggling to make sure the ipad caught the exercise. So we had to buy a tripod to put it on. Participant 2 struggled with just being able to keep the child safe due to the fear of their child contracting COVID-19. Struggles and challenges were exacerbated when resources were limited and there was limited support available due to the pandemic. Participant one explained they had to take on additional responsibilities due to having limited respite care hours. Eventually, they decided to pay out of pocket for their respite care worker because they were desperate for some relief from being alone with their child 24/7. For others, paying out of pocket for additional help or therapy items and equipment was not an option. Several of the participants shared that they altered their routines to limit their exposure to others who might pass along COVID to their child. They established protective barriers and practiced safe social distancing. Participant 4 stated, we missed a lot of his appointments and participant 1 was fearful of their respite provider being safe from COVID-19. Caregivers had to balance and prioritize the importance of therapy, the health of their child, and how to continue to support their child with disabilities during quarantine. When asked if they could go back in time and provide themselves with advice, one participant stated to have more patience: patience with their child, with the process of taking on more roles as their caregiver and occupational therapist, and patience with understanding the impact of COVID-19 because so much was unknown about the disease at this time. LIVED EXPERIENCES OF CAREGIVERS 23 Once accepting the roles and changes they were faced with, the participants began to feel more comfortable and confident in their ability to be their childs at-home caregiver and provide some level of occupational therapy intervention with the online resources provided by their registered occupational therapists. They reported that their occupational therapists provided ideas and resources that helped them provide treatment at home. Participant 2 stated her occupational therapist always gave me a list of here's what I work on this allowed her to feel more confident that she was working on their childs therapeutic goals at home. Figure 2. Emotion Themes Emotion Themes The participants expressed many emotions when they described the process changes they experienced when the lockdown occurred and as the pandemic continued. Two primary categories of emotion themes emerged from the data. The first category included the negative emotions of feeling Anxious/worried, Overwhelmed, Guilty, and Frustrated. The second LIVED EXPERIENCES OF CAREGIVERS 24 category of emotion included positive emotions of gratitude and appreciation. The participants discussed the heightened negative emotions as they shared about specific events or stressors brought about by the pandemic. These stressors included: (a) worrying about their childs health, (b) financial stress due to job insecurity and uncertainty, (c) stress related to uncertainty about what was happening around the world (d) experiencing a lack of support from others outside the immediate family, (e) the addition of new roles and responsibilities, (f) not having a break from their child, (g) and the stress of trying to learn new technology. We will discuss the negative emotions participants experienced during the reported events and stressors as well as the positive emotions of gratefulness and appreciation for the services received despite having those negative emotions. The participants consistently described feeling anxious and worried at the onset of the shutdown and throughout the pandemic. For example, participant 4 experienced anxiety when she encountered a medical emergency with her son during the onset of the pandemic. The caregiver did not want to take her child, who was immunocompromised, to a hospital where there was an influx of COVID patients. She was worried because her sons injury required immediate care, and she had to make the difficult decision to take her son to the hospital for treatment and risk getting COVID: I was just like freaking out taking him in. Due to the pressing situation, the participant felt forced to make the decision when there was no safe choice between the risk of contracting COVID and compromising her sons health. Likewise, participant 1 felt anxiety because her child was no longer receiving therapy services. The uncertainty of the duration of the pandemic caused significant worry about further delay in her sons development. She stated she was so terrified this was going to be even worse. Hence, the uncertainty of exposure to the virus and the duration of the pandemic caused anxiety for caregivers of children with disabilities because their children were immunocompromised prior to LIVED EXPERIENCES OF CAREGIVERS 25 the pandemic and they were already developmentally delayed with the potential to become more delayed due to lack of services. The participants also shared negative feelings of being overwhelmed during the pandemic. Participant 4 reported feeling the burden of providing consistent care for her child and described the feeling of being overwhelmed when she stated I felt like I didn't get a break as a mom. Ya know, because I constantly had him you know. It's like don't get me wrong, I love my kid, do anything for my kid, wanted him for forever, but need a break once in a while. Similarly, the participants also attributed feelings of being overwhelmed with new caregiver challenges caused by the pandemic, such as learning how to use technology, and figuring out how to provide their child education and therapy services without external support. Participant 2 stated, "I think just the weight of being a parent of a child who has special needs, just like exponentially grew in the pandemic". Participant 1 describes how the lack of support during the pandemic made caregiving responsibilities more challenging, If you have a strong support system, you can make it through. Umm... And so when that went away, it just kinda, it put a lot of stress on us. Without occupational therapy services, caregivers felt burdened by the additional responsibility to provide services to their child. Participant 4 stated, Just trying to find ways to continue with therapy was very stressful you know, without him having to go to therapy. Furthermore, participant 4 shared how the pandemic caused considerable shifts in social norms and ultimately felt powerlessness as a result of being overwhelmed when stating, So it was a lot, it was a lot to deal with because it becomes emotionally draining, not just for the child, but for the parent too. Because how do you make things right? Also, the pandemic took a toll on caregivers' decision making as some catastrophized and had to consider how to LIVED EXPERIENCES OF CAREGIVERS 26 protect and provide for their children during the pandemic. Participant 4 recalled that Its really hard when she has other respiratory stuff so then its like that all blew up and just trying to all the other things that every other parent was scrambling to figure outhow are we going to provide care for our kids. Although the caregivers had different life experiences, they all expressed feeling overwhelmed with the multiple stressors brought on by the COVID-19 pandemic. The third negative emotion expressed by the caregivers was guilt. Participant 1 stated Im not able to execute it the way Im supposed to when discussing their newly found role as a therapist. She felt that although she was well versed in all of the therapies, she was not able to execute them, because their child would not participate with her as the parent the same as they did with their actual therapist. Participant 3 had difficulty connecting with therapy due to the change in her grandson's guardianship and feels if they could have gotten ahold of me, then I could have arranged something for him." However, she admits she feels guilty for not scheduling therapy services for several months during the pandemic, I just feel bad for him that we lost that you know, six months in there that we could have been doing something um, but we did nothingI feel like we lost ground. Participant 3 feels responsible for her grandsons regression due to the cessation of therapy services and the lack of action taken to resume therapy. Each participant had other stressors in their personal life as well as the stressor of having to care solely for a special needs child during a pandemic, evoking a sense of caregiver guilt. Participants also experienced negative feelings of frustration during the pandemic because they expressed that they were misunderstood due to their nontraditional caregiver role of children with special needs. Participant 4 wished that people who have typical kids would have more grace because they don't understand the pressures that, you know a special needs mother is under. This participant also felt strongly about receiving services in a timely manner to prevent further setbacks in the childs progress. Additionally, participants felt frustration when they did LIVED EXPERIENCES OF CAREGIVERS 27 not fully understand how to utilize new technology in order to accommodate their child in a virtual learning environment. Participant 3 described the struggle with their technological challenges: That was tough, um because my husband [...] is the most computer person, [and] we have [...] virtual learning with [the child]. These technological barriers presented a challenge with school services, and was also a factor that impeded this family from participating in virtual therapy services. Participant 1 experienced frustration with the loss of respite hours early into the pandemic I dont know if we really handled it, I mean that, it was just one of the, umm...we didnt have any option. Um The one person that we had for respite, she was very careful going into quarantine because she knew that she wanted to watch [the child]. She watched him some, but we couldnt...We couldn't even use.. I mean we used a lot of her hours in April, May, and June So we felt like we had the support because we had our respite, and we had someone who could watch him very regularly. Umm Then we ran out of respite hours. The second broad categorical theme included the positive emotions of feeling grateful and appreciative. Their appreciation reflected their feelings toward the OT profession, their childs OT, and the new information they learned regarding OT and their child. Although many mentioned having limited support from respite and family/friends, they were thankful for the support that they did receive. Even though they experienced anxiety, worry, feeling guilty, and feeling overwhelmed during this process of change, several of the participants were appreciative of the unexpected, forced family time as many of them were experiencing hardships prior to the pandemic and it provided them time to cope that they would not have had otherwise. LIVED EXPERIENCES OF CAREGIVERS 28 According to Participant 3, there's not any replacement value for being in person with an OT with their hands and their brain and their care and their connection, but I think it actually translates fairly well to an online platform. Participant 2 stated that occupational therapy, in particular, is really well equipped to help people because you have the mental health, the cognitive perspective, the LIFE skill, the occupation, which is not your job. In addition, Participant 2 also described how it is hugely commendable, because every healthcare professional also have their own stresses and their own issues to be dealing with yet they're also trying to support families and kids who have special needs in order to be okay not only supporting [the child] but supporting me, so I could support [the child]. The participants appreciation for occupational therapy recognizes not only the value of therapy services received but the compassion that the profession provides to their families. Discussion We asked caregivers who had children receiving occupational therapy services to share their experiences before the pandemic, during the shutdown caused by the pandemic in March 2020, and approximately a year and a half after the shutdown in October 2021. Before the pandemic, the caregivers maintained well-established weekly and daily routines to complete personal, household, and work tasks while meeting the needs of their children. According to the Occupational Therapy Practice Framework (OTPF-4), routines are patterns of behavior that are observable, regular, and repetitive and that provide structure for daily life (American Occupational Therapy Association, 2020). These routines provided structure which allowed caregivers to help their children prepare for and participate in their daily activities with decreased effort and stress. ONions et al. (2018) reported that when parents LIVED EXPERIENCES OF CAREGIVERS 29 created and established routines to meet the unique needs of their child with a disability, their child exhibited a decrease in problem behaviors, which helped to reduce caregiver stress. As the world shut down due to the spread of COVID-19, the established routines of caregivers of children with disabilities were quickly disrupted, causing uncertainty about what was happening and how they would continue to meet the needs of their children. They had to adapt by creating new routines (Rogers et al., 2021) integrating the added responsibilities of creating their child's social, academic, and therapeutic environments in the isolation of their home (Fitzpatrick, 2021; Garbe, 2020). The shutdown also forced caregivers to fulfill new roles, such as being their childs teacher and therapist while maintaining their traditional roles of being a caregiver, spouse, friend, sibling, and worker at a time when work also had to take place in the home (Garbe, 2020). As caregivers established new routines and adapted to the roles of teacher and therapist, they maintained the primary goal of meeting their child's needs. To do this, they had to understand their childs therapy and education goals and figure out therapeutic and educational methods that worked best for their child to be successful. They had to purchase new supplies and equipment and learn new technology for their child to engage in online learning and participate in telehealth therapy. These added stressors and the dramatic change in routines caused caregivers to be overwhelmed and frustrated, which intensified because the caregivers felt isolated, with no respite time away from their child. Asbury et al. (2021) also attributed feelings of being overwhelmed to caregivers having total or conflicting responsibilities for their children, being unprepared, and having no support or respite while struggling with the challenges of handling their children and their behaviors. Additional stressors that caused caregivers to be worried and anxious included the uncertainty of the global and economic impact of COVID-19 and the unknown duration and severity of the pandemic. Businesses were shutting down, causing them to worry about how LIVED EXPERIENCES OF CAREGIVERS 30 they would meet their personal financial needs. They were also getting mixed messages from the media about how to best protect themselves and their child from getting COVID-19. Garbe et al. (2020) also explained that caregivers of children with disabilities were anxious about their childs return to social normalcy. As things started to open back up, caregivers were also faced with difficult decisions, such as deciding if leaving the house to get groceries or going to work was worth the risk of their medically fragile child becoming severely ill if they caught COVID. Rogers et al.(2021) reported that caregivers were overwhelmed by the uncertainty and fear of the unknown implications of the pandemic. Through all of this, the caregivers primary goal was to continue meeting the needs of their child and providing assistance to help their child continue to make progress or not become more delayed. That being said, the caregivers feelings of being anxious and worried, frustrated, and overwhelmed were layered with feelings of guilt because they felt they did not have the skills to adequately help their child or prevent their child from regressing developmentally or educationally. These feelings were enhanced because they now had limited to no social support. Under the pressure of new responsibilities, caregivers expressed having difficulty tolerating extensive time at home with their child, which led to higher levels of feeling overwhelmed and anxious (Garbe et al., 2020). All of the caregivers in our study were either mothers or grandmothers. Mothers in general, have a higher level of anxiety and guilt compared to their counterparts (Miniarikova et al., 2022), especially if they value traditional gender roles (Batram-Zanvoort et al., 2021). When mothers feel like they can not adequately meet the needs of their child, they feel like they are not being a good mother adding to their sense of guilt (Batram-Zanvoort et al., 2021). Even when caregivers experienced negative emotions of frustration, guilt, being overwhelmed, and anxious, they expressed high levels of gratitude and appreciation. They were appreciative and grateful for occupational therapy services, occupational therapy practitioners, LIVED EXPERIENCES OF CAREGIVERS 31 and the newfound understanding of their child. Being isolated and having forced time with their child helped caregivers discover new ways to integrate therapy into their daily lives because they learned new things about their children. For example, some caregivers described learning about new foods their child would eat. Some discovered their child was more engaged in activities if the child determined the activities of the day. Some caregivers also learned that their child liked to help with household tasks such as cooking and gardening and realized that their childs participation in these activities was meeting therapy goals. Ludgate et al.(2022) also found that spending increased family time during the lockdown provided caregivers with opportunities to gain skills to creatively and efficiently provide therapy intervention with a newfound understanding of their childs interests and abilities. The caregivers also expressed having a new appreciation for occupational therapy and their occupational therapy practitioner. During the pandemic, the caregivers had to implement occupational therapy on their own. They were grateful for the continued support and availability of the occupational therapists who provided ideas about alternative ways to integrate therapy with the supplies and equipment they had in the home. They developed a deeper appreciation of how occupational therapy intervention was specifically designed to help their child reach their occupational therapy goals. Some of the caregivers also discussed appreciating occupational therapy being delivered through telehealth because it reduced the necessary travel for outpatient occupational therapy. After the caregivers learned how to use the technology for telehealth, some caregivers were able to see that the occupational therapist was able to help their child meet some of their therapeutic goals through telehealth services. The caregivers were grateful for the opportunities to integrate a new understanding of their childs likes and dislikes and new creative therapeutic strategies into their newly established routines to help them meet the needs of their child in a different way. LIVED EXPERIENCES OF CAREGIVERS 32 Conclusion Our findings suggest that when caregivers of children receiving occupational therapy services are faced with major obstacles causing their childs services to be dissolved, they quickly begin a process towards making sure their childs needs continue to be met. Caregivers adjust by creating new routines, learning more about their child, and developing a better understanding of their childs occupational therapy goals and services. They may purchase the necessary equipment and supplies to take on new challenges, such as learning new skills for alternate service delivery methods (learning technology for telehealth and online education). At the same time, they adapt to larger environmental changes if needed, in this case, they adapted to feeling isolated, having no respite or time away from their child, and they adapted to the precautions caused by COVID-19. Even if the process causes negative feelings of being anxious and worried, frustrated, overwhelmed, and feeling guilty, they will do what it takes to make sure their child is successful, and their needs are being met. During this time, they are also grateful and appreciative of any assistance they can get to make sure their children's needs are being met. Beyond the shutdown caused by the COVID-19 pandemic, abrupt changes in service delivery for children who are receiving occupational therapy services are inevitable, such as when families move or experience a death or loss in the family. Occupational therapy service providers should understand a caregivers drive to ensure their childrens therapeutic needs continue to be met. They can provide vital assistance to support caregivers during this time. Occupational therapy service providers should help caregivers quickly create new routines and learn new skills if needed. Occupational therapy service providers are also equipped with the skills to address the psychological stress of caregivers. They should work with caregivers and help them find new support networks so they do not feel isolated and alone during these changes, which will ultimately help the child for whom they are providing services. LIVED EXPERIENCES OF CAREGIVERS 33 Limitations Due to the qualitative methodology of our study, the findings can not be generalized to all caregivers who had a child with a disability receiving occupational therapy prior to and into the pandemic. However, our results are transferable to similar participants experiencing the same phenomenon. Our intent was to recruit participants with a maximum variation of socioeconomic status, gender, race, and childs disability. However, we were not able to obtain such a sample. Future research should be done with participants who represent caregivers with varied demographics because it has been shown that many of these differences can affect the lived experience during this unprecedented time (Neece et al., 2020). This will allow for greater transferability of the results that may be more representative of all caregivers who have a child with a disability receiving occupational therapy during the pandemic. Researchers should also examine the long-term impact of COVID-19 on caregivers with children receiving occupational therapy. Based on our results, some of the caregivers liked using telehealth as an option for implementing occupational therapy. This will help occupational therapy practitioners provide more client-centered services while providing optimal support for families to produce better outcomes for their children. As COVID-19 continues to impact the world, researchers should continue to explore how this affects caregivers of children with disabilities and the services they receive. Follow-up studies can be done to see if caregivers' processes or emotions have changed since the initial data collection. Researchers should also identify how caregivers were best supported during this major life-changing event so occupational therapists will know how to provide the support needed for caregivers to continue to meet the needs of their children during other life-changing experiences. LIVED EXPERIENCES OF CAREGIVERS 34 LIVED EXPERIENCES OF CAREGIVERS 35 Findings Table 1. Caregiver Demographics Participant Age Relationship to the child Occupation Marital Status Education level Life Circumstances 1 44 Mother Real Estate and runs a Non-Profit Married Masters degree Parents are married, father transitioned to working from home. Parents had established a non for profit organization to support families with children with disabilities prior to the pandemic. 2 46 Mother Physical Therapist Divorced/single Graduate degree Month prior to and into the shut down family was all sick. Mom took FMLA so she could stay home with her daughter. Her daughters physicians were concerned about her daughter's compromised respiratory status and they did not want mom to be exposed to COVID and possibly bring it home to her daughter. Husband/childs dad was recovering from addictions and relapsed. Parents divorced during the lockdown and mom and daughter moved to a new city approximately 2 hours away to live with the child's grandparents. 3 65 Grandmother Paralegal/ Retired Married Paralegal degree, associates degree Lost daughter a few months before the pandemic started and became full-time caregiver of grandchild due to limited involvement of the child's father. Child lives with his father, grandparents do all of the child's care. LIVED EXPERIENCES OF CAREGIVERS 4 52 Mother Homemaker 36 Single Junior year in college Lost father at beginning of the pandemic. Lost her fathers brother (uncle) 5 months later. Lost cousin who lived across the street 6 weeks later. Her partner/childs father lives across the street because he was taking care of his mother before she passed away in the summer of 2021. Table 2. Child Demographics Participant Child Age Child Diagnosis Duration of OT services before March 2020 Duration of OT services after March 2020 1 9 Hydrocephalus Since childs birth All in-person therapy stopped. They began virtual therapy services/created an at home therapy gym. Received school OT/PT services once schools opened. Continued x1/week outpatient. 2 7 Down Syndrome Since child was 6 mo; began Theraplay at 2017 Moved to virtual therapy services in April 2020. Continued therapy Thursdays in Indianapolis. Dropped PT due to a child being involved in gymnastics. 3 13 Cerebral Palsy ? OT and PT ended with the shut down caused by the pandemic. They did not do virtual OT, they resumed OT in August 2020. Grandma reported that dad received an email asking about virtual OT, but dad did not use computers regularly, therefore he did not get the email. She regretted not having done anything for three months. LIVED EXPERIENCES OF CAREGIVERS 4 8 Down Syndrome Since childs birth Outpatient OT and speech 3x/wk at KidsAbility School OT, PT, and speech 37 Around mid June 2020 LIVED EXPERIENCES OF CAREGIVERS 38 References AJMC staff (2021, January1). A timeline of COVID-19 developments in 2020. https://www.ajmc.com/view/a-timeline-of-covid19-developments-in-2020 Allison, K. M., & Levac, D. E. (2022). Impact of the COVID-19 pandemic on therapy service delivery and functioning for school-aged children with disabilities in the United States. Disability and Health Journal, 15(2), 101266. https://doi.org/10.1016/j.dhjo.2021.101266 Asbury, K., Fox, L., Deniz, E., Code, A., & Toseeb, U. (2021). How is COVID-19 Affecting the Mental Health of Children with Special Educational Needs and Disabilities and Their Families? Journal of Autism and Developmental Disorders, 51(5), 1772-1780. https://doi.org/10.1007/s10803-020-04577-2 Batram-Zantvoort, S., Wandschneider, L., Razum, O., & Miani, C. (2021). Myths of good motherhood and the wellbeing of mothers during the Covid-19 pandemic. European Journal of Public Health, 31(3), ckab165-041. Cacioppo, M., Bouvier, S., Bailly, R., Houx, L., Lempereur, M., Mensah-Gourmel, J., ... & ECHO Group. (2020). Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey. Annals of physical and rehabilitation medicine. Children with Disabilities and Covid-19. UNICEF DATA. (2021, December 13). https://data.unicef.org/topic/child-disability/covid-19/ Cole, M. & Tufano, R. (2020). Applied theories in occupational therapy: A practical approach. (2nd Ed.). SLACK Inc. Creswell, J. (2013). Qualitative inquiry and research design: Choosing among five approaches (3rd ed.). Sage. LIVED EXPERIENCES OF CAREGIVERS 39 Dahl-Popolizio, S., Carpenter, H., Coronado, M., Popolizio, N. J., & Swanson, C. (2020). Telehealth for the provision of occupational therapy: Reflections on experiences during the COVID-19 pandemic. International Journal of Telerehabilitation, 12(2), 7792. https://doi.org/10.5195/ijt.2020.6328 Dunn, W., Brown, C., & McGuigan, A. (1994). The ecology of human performance: A framework for considering the effect of context. American Journal of Occupational Therapy, 48, 595-607. Fitzpatrick, O., Carson, A., & Weisz, J. R. (2021). Using mixed methods to identify the primary mental health problems and needs of children, adolescents, and their caregivers during the coronavirus (COVID-19) pandemic. Child psychiatry and human development, 52(6), 10821093. https://doi.org/10.1007/s10578-020-01089-z Garbe, A., Ogurlu, U., Logan, N., & Cook, P. (2020). COVID-19 and Remote Learning: Experiences of Parents with Children during the Pandemic. American Journal of Qualitative Research, 4(3), 45-65. https://doi.org/10.29333/ajqr/8471 GPE Secretariat (2016, December 3). Children with disabilities face the longest road to education. Global Partnership for Education. https://www.globalpartnership.org/blog/children-disabilities-face-longest-road-education Grumi, S., Provenzi, L., Gardani, A., Aramini, V., Dargenio, E., Naboni, C., Vacchini, V., Borgatti, R., & Group, E. with F. through O. R. for C. during the E. (EnFORCE). (2021). Rehabilitation services lockdown during the COVID-19 emergency: the mental health response of caregivers of children with neurodevelopmental disabilities. Disability and Rehabilitation, 43(1), 2732. https://doi.org/10.1080/09638288.2020.1842520 LIVED EXPERIENCES OF CAREGIVERS 40 Jeste, S., Hyde, C., Distefano, C., Halladay, A., Ray, S., Porath, M., Wilson, R. B., & Thurm, A. (2020). Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions. Journal of Intellectual Disability Research, 64(11), 825833. https://doi.org/10.1111/jir.12776 Ludgate, S., Mears, C., & Blackburn, C. (2022). Small steps and stronger relationships: Parents experiences of homeschooling children with special educational needs and disabilities (SEND). Journal of Research in Special Educational Needs, 22(1), 6675. https://doi.org/10.1111/1471-3802.12542 Masonbrink, A. R., & Hurley, E. (2020). Advocating for Children During the COVID-19 School Closures. Pediatrics, 146(3), e20201440. https://doi.org/10.1542/peds.2020-1440 McFayden, T. C., Breaux, R., Bertollo, J. R., Cummings, K., & Ollendick, T. H. (2021). COVID-19 remote learning experiences of youth with neurodevelopmental disorders in rural Appalachia. Journal of Rural Mental Health, 45(2), 7285. https://doi.org/10.1037/rmh0000171 Miniarikova, E., Vernhet, C., Peries, M., Loubersac, J., Picot, M., Munir, K., & Baghdadli, A. (2022) Anxiety and depression in parents of children with autism spectrum disorder during the first COVID-19 lockdown: Report from the ELENA cohort. Journal of Psychiatric Research, 149. 344-351 Murphy, A., Pinkerton, L. M., Bruckner, E., & Risser, H. J. (2021). The Impact of the Novel Coronavirus Disease 2019 on Therapy Service Delivery for Children with Disabilities. The Journal of Pediatrics, 231, 168. https://doi.org/10.1016/j.jpeds.2020.12.060 Neece, C., McIntyre, L. L., & Fenning, R. (2020). Examining the impact of COVID-19 in ethnically diverse families with young children with intellectual and developmental LIVED EXPERIENCES OF CAREGIVERS 41 disabilities. Journal of Intellectual Disability Research, 64(10), 739-749. https://onlinelibrary.wiley.com/doi/abs/10.1111/jir.12769 O'Nions, E., Happ, F., Evers, K., Boonen, H., & Noens, I. (2018). How do Parents Manage Irritability, Challenging Behaviour, Non-Compliance and Anxiety in Children with Autism Spectrum Disorders? A Meta-Synthesis. Journal of autism and developmental disorders, 48(4), 12721286. https://doi.org/10.1007/s10803-017-3361-4 Paulauskaite, L., Farris, O., Spencer, H. M., EPICC-ID group, & Hassiotis, A. (2021). My son cant socially distance or wear a mask: how families of preschool children with severe developmental delays and challenging behavior experienced the covid-19 pandemic. Journal of Mental Health Research in Intellectual Disabilities, 14(2), 225-236. Payne, J. (2020). Emotional Health in Isolation: Supporting Someone with Disabilities at Home During Covid-19. Exceptional Parent, 50(7), 4445. Priyadharsini, H., & Chiang, J. J. (2020). Embracing telehealth: supporting young children and families through occupational therapy in Singapore during COVID-19. World Federation of Occupational Therapists Bulletin, 76(2), 9093. https://doi.org/10.1080/14473828.2020.1822574 Provenzi, L., Grumi, S., Gardani, A., Aramini, V., Dargenio, E., Naboni, C., Vacchini, V., Borgatti, R., & Engaging with Families through Online Rehabilitation for Children during the Emergency (EnFORCE) Group. (2021). Italian parents welcomed a telehealth family centered rehabilitation programme for children with disability during COVID-19 lockdown. Acta Paediatrica, 110(1), 194196. https://doi.org/10.1111/apa.15636 Rogers G, Perez-Olivas G, Stenfert Kroese B, Patel V, Murphy G, Rose J, Cooper V, Langdon PE, Hiles S, Clifford C, Willner P. (2021) The experiences of mothers of children and LIVED EXPERIENCES OF CAREGIVERS 42 young people with intellectual disabilities during the first COVID-19 lockdown period. J Appl Res Intellect Disabil.1421-1430. doi: 10.1111/jar.12884. Epub 2021 Mar 23. PMID: 33759291; PMCID: PMC8250127 Saldaa, J. (2013). The coding manual for qualitative researchers (2nd ed.). SAGE Spradley, J. (2016) The ethnographic interview. (2nd ed.). Waveland Press. (original work published 1979) United States Government Accountability Office (2020). Challenges providing services to K-12 english learners and students with disabilities during COVID-19. Retrieved from https://www.gao.gov/assets/gao-21-43.pdf. White, L. C., Law, J. K., Daniels, A. M., Toroney, J., Vernoia, B., Xiao, S., Feliciano, P., Chung, W. K., & The SPARK Consortium. (2021). Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-02004816-6 Wood, Jennifer & Connelly, Denise & Maly, Monica. (2010). 'Getting back to real living': A qualitative study of the process of community reintegration after stroke. Clinical rehabilitation. 24. 1045-56. 10.1177/0269215510375901. Zoom Video Communications Inc . (2016). Security guide. Zoom Video Communications Inc. https://d24cgw3uvb9a9h.cloudfront.net/static/81625/doc/Zoom-Security-White-Paper.pdf LIVED EXPERIENCES OF CAREGIVERS 43 Appendix Introductory Questions to be completed during the initial phone call. Tell me more about your family and children. a. How many children do you have? b. How old is your child with a disability? c. What is your childs diagnosis? d. Where did your child receive occupational therapy services prior to the pandemic? e. How long did your child receive occupational therapy services prior to the onset of the pandemic in March of 2020? f. How long did your child receive occupational therapy after the onset of the pandemic? Tell me about yourself. g. How old are you? h. Do you currently work, if so where? i. What is your marital status? j. What is your highest level of education? k. What are some of your Interests and hobbies?  ...

... Development of a Peer Mentor Program for the Inpatient SCI Population at the Rehabilitation Hospital of Indiana Gabrielle Castor May, 2022 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: Kelsey Robertson, OTD, OTR Abstract The Rehabilitation Hospital of Indiana (RHI) is an acute inpatient rehabilitation hospital in the Midwest. The hospital serves many populations, however the needs of the spinal cord injury (SCI) population were identified to develop a peer mentor program. The SCI Peer Mentor Program Manual was developed through a doctoral capstone project to provide RHI with a detailed protocol for implementing and evaluating the program. A separate Peer Mentor Training Manual was developed to guide training peer mentors. An extensive search through literature and an examination of needs of the site and population were completed through needs assessments and a SWOT analysis. When disseminating the capstone project to RHI stakeholders, individuals reviewed contents of each manual and discussed challenges with implementing the program. However, stakeholders reported that each manual supported their mission to provide the best care for their patients and fulfilled requirements to maintain CARF accreditation. Introduction RHI provides acute inpatient and outpatient services for brain injury, spinal cord injury (SCI), stroke, transplant, and comprehensive acute rehabilitation (RHI, n.d.). The hospital strives to create leading-edge interventions that reduce disability, maximize patient outcomes, and improve methods for measuring and tracking patient progress and rehabilitative effectiveness. Expert clinicians at RHI are committed to clinical and translational research of brain injury, spinal cord injury, stroke, and comprehensive medical populations. The inpatient acute SCI program treats central cord injuries, paraplegia, quadriplegia, tetraplegia, transverse myelitis, simultaneous SCI and brain injuries, and other neurological disorders (RHI, n.d.). As a CARF-Accredited SCI program, RHI has many regulations they have to follow to maintain their accreditation status. One requirement is that the spinal cord specialty program provides peer support services that address the needs and preferences of the person served (CARF, n.d.). CARF standards also indicate that peer support programs must have a competency-based training and written procedures for the recruitment of peer supporters. My capstone project at RHI had a focus of program development and creating a comprehensive Peer Mentor Program Manual for the SCI population, as well as curriculumbased Peer Mentor Training Manual that will be used when RHI begins implementing the program. The following sections of this scholarly report will highlight the results of the needs assessment for the SCI population, a summary of current literature to support this program, project design, implementation, and outcomes. This scholarly report will also discuss the sites plan for continuation of the program and recommendations for future research studies. Background In 2011, the National Spinal Cord Injury Statistical Center (NSCISC) reported 12,000 new yearly SCI cases in the United States (NSCISC, 2011). In 2021, the number of new yearly cases increased to 17,900 (NSCISC, 2021). After experiencing an SCI, individuals spend an average of 11 days in acute care, 30 days in rehabilitation, and then begin community reintegration (NSCISC, 2011). Patients at RHI have an average length of stay of 14 days (RHI, n.d.). There are many important things for people to learn during their time in the hospital to prepare them for life after discharge. Li et al. (2020) state that inpatient rehabilitation programs are crucial to promote coping and adaptation to the injury (p. 218). Patients in acute inpatient rehabilitation at RHI receive comprehensive skill training, education on the anatomy of SCI and preventing medical complications, and acute discharge planning in group and individual treatment. There is a need for preparing individuals with shortened rehabilitation stays to detect potentially avoidable outcomes, such as rehospitalization (Stillman et al., 2017). Recent estimates indicate 36% of SCI patients will have unplanned readmissions, and over 12% will have multiple readmissions within the first year. In turn, patients leave feeling emotionally overwhelmed, socially isolated, and lacking in competence and confidence needed to assume responsibility for their care needs (Gassaway et al., 2017). Inpatient rehabilitation assists patients with SCI to acquire new skills necessary for physical, psychological, and social functions and helps patients build confidence and selfefficacy with community re-integration and managing life after injury (Li et al., 2020). Selfefficacy is defined as a belief in ones ability to execute actions required to achieve desired outcomes, and is an important predictor of participation and contributes to resilience, quality of life, and well-being after SCI (Gounelle et al., 2021; Jones et al., 2021). Low levels of selfefficacy are associated with long-term complications and decreased psychological well-being (Gounelle et al., 2021), while higher self-efficacy is associated with successful psychological adaptation to SCI and positive correlation with quality of life and well-being (Li et al., 2020). Peer mentorship has been shown to support coping with a recent SCI and prepare individuals for discharge. According to Jones et al. (2021), peer mentoring and peer-led instruction have also been shown to improve self-efficacy. Peer mentorship is defined as a peer interaction with someone who shares similar lived experiences and provides encouragement, resources, and knowledge to help the peer adapt and/or thrive (Gainforth et al., 2019 & Sweet et al., 2021). Gassaway et al. (2017) reported that people learn more and try harder when they learn from people they perceive to be like themselves, managing similar circumstances (p. 1527). In a study by Wobma et al. (2019), 73.3% of inpatient rehabilitation patients expressed a need for peer support upon admission. The researchers also suggested that healthcare professionals support in rehabilitation teams is insufficient to satisfy all patients needs. There are many well-established peer mentor programs in the United States, including the Christopher and Dana Reeve Foundation, Mount Sinai, the United Spinal Association, and Shepherd Center. These programs utilize research and participant feedback to support their program and maximize the benefit to those served. Support is offered through one-on-one interactions, group interactions, and topic specific educational groups. Many of these programs offer long-distance mentoring and communication is done through e-mail or telephone. While these programs have benefitted many individuals across the country, there continues to be a need for matching peers with mentors who live close in proximity. Peer mentors who live in close proximity to their peers are able to provide more appropriate community resources and introduce peers to a community of other peers that live nearby. In addition, living near peers gives peer mentors an opportunity to visit their peers during their inpatient stay and after they discharge home. RHIs Peer Mentor Program is designed to provide support and resources through a 1:1 relationship between and individual who has been successfully living with SCI for at least 1 year (peer mentor) and an individual who is currently in inpatient rehabilitation with an SCI (Bridges, A., 2021). The goals of the program are to close the gap between current methods of care and the specific needs of the acute inpatient SCI population. More specifically, the program is intended to decrease unplanned hospital readmissions, assist in community reintegration, improve self-efficacy, and improve psychological well-being (Hibbard, M. R. & Cesario, J., n.d.). Peer mentors will be from Indiana so mentors are able to meet with peers during their inpatient stay and continue in-person meetings in the community following the peers discharge. Through the development of the RHI Peer Mentor Program for the SCI population, a peer mentor program manual and peer mentor training manual were developed to provide the hospital with a detailed protocol for implementing the program. The training manual provides specific evidence-based training topics that will improve outcomes and satisfaction for both peer mentors and peers. Lastly, these manual are each unit because they were developed from the most up-to-date literature, whereas the only other SCI peer mentor program manual utilizes outdated literature. Model and Frame of Reference The Person-Environment-Occupation-Performance (PEOP) model suggests that occupational performance results from the interaction between the person, environment, and occupation. In this model, dysfunction is evident when a persons occupational performance is limited, and they cannot fulfill their role responsibilities (Cole & Tufano, 2008). Individuals who are in the acute inpatient SCI unit experience dysfunction because they are unable or unsure how to perform meaningful occupations and will likely be unable to fulfill their role responsibilities for some time after discharge. The SCI Peer Mentor Program is designed to help individuals recognize that they are competent to achieve occupational performance to facilitate their persistence through change. Based on evidence from the PEOP model, the program will also increase occupational performance competency, develop life-long skills, and increase ones sense of health and well-being. The Psychodynamic Frame of Reference suggests there might be something beneath the surface in a person that should be explored using psychodynamic strategies. The frame also indicates that change is the result of insight, self-understanding, and reflection upon their perceptions of past experiences. Through the SCI Peer Mentor Program, the Psychodynamic Frame of Reference will aid peers in relating to individuals they are paired with and facilitate a strong sense of self to improve occupational performance areas. Further, therapeutic relationships will help individuals become aware of the emotions, motivations, and conflicts that are hidden in their unconscious (Cole & Tufano, 2008). Project Project design During the development of the SCI Peer Mentor Program, the specific needs of the site were identified through two needs assessments with the site and patients on the acute inpatient SCI unit, a strengths weakness opportunity threat (SWOT) analysis with RHI stakeholders, and a comprehensive review of literature and CARF guidelines regarding spinal cord injury specialty programs. The RHI SCI Peer Mentor Program Manual and SCI Peer Mentor Training Manual were created to provide an evidence-based protocol for implementing the program. The SCI Peer Mentor Program Manual includes the following information: background information of RHI and the SCI population, description of the SCI Peer Mentor Program, review of CARF requirements, results from the needs assessment and SWOT analysis, methods of funding, protocols for recruiting and screening peer mentors and peers, protocols for matching individuals to ensure effective mentorship and training peer mentors, methods for effectively evaluating the program. An appendix is located at the end of the manual which includes HIPAA and release of information forms, flyers, and handouts for peers and mentors. The SCI Peer Mentor Training Manual was created to be utilized by Training Facilitator(s) or Program Coordinator(s) during mentor training sessions. Each activity in the training manual is designed to reflect group training protocols at RHI for continuity and usability with RHI employees. Training activities were designed to reflect existing peer mentor programs as well as updated to incorporate suggestions from the literature surrounding peer mentoring and improving self-efficacy, community reintegration, and self-management of injury. Implementation My project was implemented through evaluating the continuum of care for patients with SCI and analyzing patient responses surrounding their needs in rehabilitation. Therapists who primarily treat patients with SCI were provided parts of the SCI Program Manual throughout its development and encouraged to participate in needs assessments when they were administered to patients. The SCI Peer Mentor Program Manual was disseminated to relevant stakeholders at RHI. Therapy leadership, the Physical Medicine and Rehabilitation doctor, nursing leadership, and other members of the programs management team attended a zoom meeting to discuss contents of the program manual and strategies to implement the SCI Peer Mentor Program. When designing and implementing my project, there was limited participation and feedback provided my SCI therapists. During dissemination of my project, the programs management team identified the biggest challenge to implementing the program will be identifying Program Coordinator(s). After discussions about using resources to mitigate this barrier, the team reported they will not be able to immediately implement the program and the process of implementation will take time. The development of the SCI Peer Mentor Program was successful in finding resources and relevant literature to support contents of the SCI Peer Mentor Program Manual and Training Manual. Another success of developing the SCI Peer Mentor Program for RHI is that it provides guidelines for peer mentoring that can be adapted for other populations at RHI and other facilities that treat these populations. Project Outcomes The results of the inpatient needs assessment supported and informed the development of the peer mentor program. Most individuals recalled topics from spinal cord education groups. However, many individuals and caregivers reported that most information from group education didnt apply to them. The biggest concerns that individuals expressed about returning home were regarding caregiver burden, managing their injury at home, returning to work, applying what they learned in rehabilitation to their daily life at home, and lacking community resources. 84% individuals that responded to questions shared that they do think peer mentoring would be beneficial during their acute inpatient stay at RHI, and 69% of individuals indicated they would participate in the program if it were currently offered. The table below captures responses from the SWOT analysis given to RHI stakeholders. Strengths Destination of choice across the state for inpatient and outpatient SCI population Specialized MDs, RNs, and therapists Positive patient experiences Follow-up clinic, adaptive equipment resources, sports program Weaknesses RHI Spinal Cord Program lacks resources Presence of virtual platform Funding No current mentor pool Longitudinal monitoring of previous SCI Peer Mentor Program Opportunities Restarting adaptive sports teams, support groups, community fitness, driving program New research Virtual platform Maintaining patient relationships Advertising in the community Threats Other inpatient rehabilitation facilities New facilities creating community resources COVID-19 and visitor restrictions Mentor distances from RHI facility After disseminating the SCI Peer Mentor Program Manual, RHI stakeholders shared that they were impressed with the program I developed for them and they appreciated that the program was uniquely made to address the needs of their patients. Stakeholders remarked that the manual was made to reflect best practice and the relevance of literature used to support the program and training of peer mentors is impressive. Many individuals who attended the dissemination presentation were excited to present this to CARF in the coming weeks to show their goals for providing the best care for patients with SCI at RHI. Summary RHI is a leading rehabilitation hospital that strives to maximize outcomes for each population served. There has been an increase in research that aims to understand how patients, specifically with an SCI, reintegrate into the community and manage their new diagnosis. Many studies indicate that high levels of self-efficacy correlate to improved outcomes after discharge from inpatient rehabilitation (Li et al., 2020). However, it has become increasingly evident that support from peers improves coping with life after injury and better prepares patients for discharge. The SCI Peer Mentor Program was developed in response to needs indicated through literature, patients with SCI at RHI, and RHI stakeholders. More specifically, many patients on the acute inpatient SCI unit at RHI shared that information from SCI education groups was generalized and generally not applicable to them. 84% of patients who completed the needs assessment indicated that peer mentoring would be beneficial during their hospital stay and over half of respondents stated that they would participate if the program was currently offered. The SCI Peer Mentor Program Manual and Training Manual reflect what the site aims to provide when the program is implemented. However, the site will need to discuss strategies for finding Program Coordinator(s) and peer mentors prior to beginning implementation. Conclusions Throughout the development of the RHI SCI Peer Mentor Program, it became evident that rehabilitation nurses, doctors, and therapists can equip patients with skills to successfully return home. However, patients often lack confidence in managing life after injury and hearing experiential knowledge from peers improves coping, resilience, and community reintegration after injury. The SCI Peer Mentor Program at RHI will improve outcomes, satisfy CARF requirements to maintain accreditation, and increase community resources for individuals living with SCI. It is suggested that future studies or expansions from this program evaluate effective implementation steps and which stakeholders should be more involved from the beginning of program development. After the SCI Peer Mentor Program is implemented, the site should consider having mentors lead group education sessions to improve carry-over of knowledge and increase participation from patients. It is essential for researchers to continue examining how peer mentoring effects success after patients are discharged from inpatient rehabilitation. References Bridges, A. (2021, November 17). 11 Steps to Implementing a DSP Peer Mentoring Program. Relias. https://www.relias.com/blog/11-steps-to-implementing-a-dsp-peer-mentoringprogram CARF accreditation focuses on quality, results. CARF International, www.carf.org, Commission on the Accreditation of Rehabilitation Facilities. (n.d.). Retrieved February 2, 2022, from http://carf.org/home/ Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated Gainforth, H. L., Giroux, E. E., Shaw, R. B., Casemore, S., Clarke, T. Y., McBride, C. B., Garnett, C. V., & Sweet, S. N. (2019). Investigating Characteristics of Quality Peer Mentors With Spinal Cord Injury. Physical Medicine and Rehabilitation, 100, 1916-1923. doi: 10.1016/j.apmr.2019.04.019 Gassaway, J., Jones, M. L., Sweatman, M., Hong, M., Anziano, P., DeVault, K. (2017). Effects of Peer Mentoring on Self-Efficacy and Hospital Readmission After Inpatient Rehabilitation of Individuals With Spinal Cord Injury: A Randomized Controlled Trial. Archives of Physical Medicine and Rehabilitation, 98, 1526-1534. http://dx.doi.org/10.1016/j.apmr.2017.02.018 Gounelle, M., Cousson-Gelie, F., Nicolas, B., Kerdraon, J., Gault, D., Tournebise, H., Goossens, D., Leynaert, V., Middleton, J., Coffy, A., & Gelis, A. (2021). French cross-cultural adaptation and validity of the Moorong Self-Efficacy scale: The MSES-FR, a measure of Self-Efficacy for French people with spinal cord injury. Disability and Rehabilitation, 1-9. doi: 10.1080/09638288.2021.2003452 Hibbard, M. R. & Cesario, J. (n.d.). A Community Based Peer Mentoring Program For Individuals With Spinal Cord Injury: Program Manual. Mount Sinai. https://icahn.mssm.edu/files/ISMMS/Assets/Research/Spinal%20Cord%20Injury/sci_co mmunity_based_peer_mentoring_manual.pdf Jones, M. L., Gassaway, J., & Sweatman, W. M. (2021). Peer mentoring reduces unplanned readmissions and improves self-efficacy following inpatient rehabilitation for individuals with spinal cord injury. The Journal of Spinal Cord Medicine, 44(3), 383-391. doi: 10.1080/1070268.2019.1645407 Li, Y., Chien, W. T., Zhu, B., He, H., & Bressington, D. (2020, December 18). Predictors of Self-Efficacy Among People With Spinal Cord Injury During Inpatient Rehabilitation: A Cross-Sectional Study. Journal of Nursing Scholarship, 53(2), 218-226. doi:10.1111/jnu.12632 Rehabilitation Hospital of Indiana (RHI). (n.d.). https://www.rhirehab.com/ Stillman, M. D., Barber, J., Burns, J., Williams, S., & Hoffman, J. M. (2017). Complication of Spinal Cord Injury Over the First Year After Discharge From Inpatient Rehabilitation. Archives of Physical Medicine and Rehabilitation, 98, 1800-1805. http://dx.doi.org/10.1016/j.apmr.2016.12.011 Sweet, S. N., Hennig, L., Shi, Z., Clarke, T., Flaro, H., Hawley, S., Schaefer, L., & Gainforth, H. L. (2021). Outcomes of peer mentorship for people living with spinal cord injury: perspectives from members of Canadian community-based SCI organizations. Spinal Cord, 59, 1301-1308. doi: 10.1038/s41393-021-00725-2 The National Spinal Cord Injury Statistical Center (NSCISC). (2011, February). Spinal Cord Injury Facts and Figures at a Glance. https://www.nscisc.uab.edu/PublicDocuments/nscisc_home/pdf/Facts%202011%20Feb %20Final.pdf The National Spinal Cord Injury Statistical Center (NSCISC). (2021). Spinal Cord Injury Facts and Figures at a Glance. https://www.nscisc.uab.edu/Public/Facts%20and%20Figures%20%202021.pdf Wobma, R., Nijland, R., & Kwakkel, G. (2019, June 14). Patient Characteristics related to the need for peer support in rehabilitation after acquired brain injury: a prospective cohort study in the Netherlands. BMJ Open, 9, 1-9. doi: 10.1136/bmjopen-2018-025665 Appendix  ...

... Incorporating Play Based Activities in Pediatric Hand Therapy at the Indiana Hand to Shoulder Center Lindsey Bernzott May 1, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Katie M. Polo, DHS, OTR, CLT-LANA 1 Abstract The purpose of this Doctoral Capstone Project was to create occupation-based interventions and resources to be used at the Indiana Hand to Shoulder Center that are geared toward the pediatric population. Through a thorough literature search, evidence-based intervention ideas were identified and created in the form of handouts and intervention bins to be used with pediatric patients. The purpose of the resources is to create intervention activities that consider both biomechanical concepts as well as the use of occupation-based activities to work toward meeting therapy goals with pediatric patients. With play being a childs main occupation, interventions are geared toward facilitating play while working to improve strength and range of motion. The goal of the resources was to create bins and home exercise handouts that include activities that therapists can replicate in the clinic and are also motivating and easily engage the child. To measure the effectiveness of the resources created, a four-question survey was administered to therapists and parents of pediatric patients asking them to rate the level of effectiveness of the bins and the handouts for future use at the Indiana Hand to Shoulder Center. 2 Introduction The Indiana Hand to Shoulder Center was founded in 1971 and is the largest hand therapy facility in the United States (Indiana Hand to Shoulder Therapy Center, n.d.) The center's mission is to combine expertise with compassion to ease your pain and restore function for injuries of the hand, wrist, elbow, and shoulder (Indiana Hand to Shoulder Therapy Center, n.d.). The Indiana Hand to Shoulder Center has six locations across Indiana, with their main facility being on the northside of Indianapolis. This location is where I will be for my Doctoral Capstone. At this facility, physicians perform both conservative non-surgical treatment as well as state-of-the-art surgical procedures. If it is needed, a highly skilled therapist can work with patients to treat sprains, strains, non-compound fractures, as well as providing wound care. These therapists create custom fabricated splints and design strength building, flexibility, and range-ofmotion exercises to be completed to regain function (Indiana Hand to Shoulder Therapy Center, n.d.). Therapists specialize in scar management as well as edema control. All therapists have extensive training to design therapy programs for individuals to reduce the risk of injury in the shortest period of time, regain maximum function, and to do this in the most cost-effective manner available (Indiana Hand to Shoulder Therapy Center, n.d.). For my DCE project, I will be developing pediatric hand therapy resources for the Indiana Hand to Shoulder Center. Recently, services for pediatric hand therapy at this facility have increased, creating a need for more resources to be created specifically for the Fishers location. Through researching the existing evidence, I will identify typical outcome measures to use for the pediatric population, common orthosis used, and develop treatment interventions to be used in the clinic. During my time, I will research common surgical interventions for both congenital injuries, as well as brachial plexus injuries and work to develop a common treatment 3 protocol. Through my project, I will deepen my knowledge of pediatric hand therapy and create resources for the Indiana Hand to Shoulder Center to use in future practice. Background Following World War II there was a significant increase in the need for treatment of upper extremity injuries (Melvin, 1985). After the polio epidemic of the 1950s, an increase in government support for rehabilitation allowed for the development and assessment of upper extremity functioning (Melvin, 1985). During the 1960s moldable plastics revolutionized orthotics and created new treatment options, increasing the demand for occupational therapy services for the upper extremity (Melvin, 1985). As hand surgery continued to advance, the need for hand therapists to enhance the outcome of surgery for traumas, disease, and congenital deformities became more evident. With occupational therapists having a deep understanding and experience with the treatment of the upper extremity injuries or conditions, they began to fill this role (Melvin, 1985). Hand therapy is an integration of both physical and occupational therapy theories and practice models (ASHT, 2015). Occupational therapists working in hand therapy primarily use a more biomechanical approach to treatment of upper extremity injuries rather than an occupation based. The biomechanical frame of reference is primarily focused on protecting the surgery, gaining range of motion, wound healing, scar management, and decreasing edema (Jack & Estes, 2010). Occupation based hand therapy can be described as a way of treating patients that balances the value of occupations as a therapeutic mechanism and maintains the value of biomechanical principles (Colaianni et al., 2015). The use of occupation-based intervention in hand therapy is shown to benefit clients by facilitating functional activity, meaningful therapeutic experiences, and holistic approach to treatment and increase interest and repetitions 4 performed in treatment sessions (Colaianni & Provident, 2010). During a hand therapy treatment session, the use of occupation can be used as a means and an end of treatment for occupationbased intervention. Occupation as a means is referred to as occupations or purposeful activities functioning as a remediation agent to restore a client's physical function (Che Daud et al., 2016). It is recommended that occupational therapists assess patients using a top-down approach, assessing what the client wants and needs to do rather than looking at their physical deficits first (Burley et al., 2018). The use of purposeful activities during therapy sessions can facilitate the development of skills that increase occupational performance in individuals following an upper extremity injury (Che Daud et al., 2016). It is easy for occupational therapists working in hand therapy to focus treatment sessions on gaining strength and range of motion for patients. When an individual suffers an injury to their upper extremity, they are impacted in physical function but also are impacted with activities of daily living, physiological, and social aspects of daily life (Che Daud et al., 2016). It is important for therapists to consider this concept when working with an individual after an upper extremity injury. By creating interventions that use purposeful or meaningful activities like tying shoes or buttoning a shirt, a patient can improve range of motion, strength, fine motor skills and dexterity without the use of rote exercises. In an article by Rostami et al, the use of occupation-based-interventions versus rote exercises for individuals with median and ulnar nerve injuries demonstrated continued improvement following therapy sessions and the patients reported higher levels of perceived performance and satisfaction on the Canadian Occupational Performance Measure (2016). In an article by Phillips et al., 500 Occupational Therapists that were members of American Occupational Therapy Association (AOTA), and working in hand therapy, were given a survey to examine the trends and barriers in the use of occupation-based interventions in hand therapy (Phillips et al., 2019) Of the 500 5 surveys administered, 108 participants completed the survey. Of the 108 responses, 55.6% of occupational therapists working in hand therapy settings said they were successfully able to incorporate occupation-based interventions into their treatment sessions (Phillips et al., 2019). Pediatric hand therapy can assist children in gaining functional skills needed for school tasks, play, and other activities of daily living (Hand Therapy & Splinting for Children, 2021). The goal of treatment is to restore function, prevent dysfunction, or reverse the advancement of a disease or injury of the upper extremity (Hand Therapy & Splinting for Children, 2021). Pediatric hand therapy can work to treat a variety of conditions. Some conditions commonly treated in pediatric hand therapy are injuries due to accident or trauma, pain that interferes with school or play, trauma at birth resulting in brachial plexus injury, and congenital anomalies (Hand Therapy & Splinting for Children, 2021). Some of the most common intervention techniques used in pediatric hand therapy look similar to those used with adults. Common pediatric interventions include edema reduction, pain management, splint fabrication, scar management, sensory evaluation, assistive devices, and activity modification to improve function and independence in occupations (Hand Therapy & Splinting for Children, 2021). Occupations are important to an individual's identity, health, and competence. An occupation is referred to as everyday activities that individuals want to do, need to do, and are expected to do (AOTA, 2020). Play is a childs main occupation. According to the American Occupational Therapy Association, play is defined as activities that are intrinsically motivated, internally controlled, and freely chosen (2020). Pediatric hand therapy can be enhanced by the use of play with everyday items. When play is used for hand therapy intervention, children are intrinsically motivated to participate in therapy when this option is presented (Peck-Murray, 2015). As children play, they integrate skills of pinch, grasp, and manipulation to create 6 purposeful movement (Cooper, 2007). When creating intervention for pediatric patients, hand therapists can develop fun, age-appropriate activities for children to engage in that integrate play. Instead of spending money on expensive objects to use for therapy, therapists can use common objects such as coins, buttons, cotton balls, paper cups, tubes, rubber bands, pasta, hand towels, and wooden spoons to facilitate interventions that use games and play-based activities. (PeckMurray, 2015). Activities and games that children are motivated to engage in versus rote exercises were shown to reduce pain and improve function of the hand (Peck-Murray, 2015). One example of an intervention that could be used with common household items to create a game or competition that the child is motivated to engage in is using a wooden spoon with the childs arm in supination to carry a coin and place it in a cup across the table, racing another individual (Peck-Murray, 2015). An example of an activity that is illustrated on the handouts and correlates with items in the intervention bins, is to use a cotton ball and a syringe, creating a game where the patient races a peer to see who can get the cotton ball across the table the fastest. This activity is fun and motivating for the child but also works on strengthening the hand and improving flexion and extension of the patients digits. When working with pediatric patients, it is important to consider the role of the parent in the treatment plan. The child is only one part of the family unit which is required to encourage, comprehend, and follow through with the treatment plan given by a hand therapist (Lakes, 2010). To have compliance with a home exercise program the parents must be involved in programming (Hines et al., 2020). By increasing compliance with home exercise programs, children can demonstrate improved outcomes and successful participation in everyday occupations that they find meaning in (Hines et al., 2020). Parents have the advantage of spending longer periods of time with the children and can observe their day-to-day activities, allowing them to pick up on 7 things that the child may be doing to avoid using the affected extremity or overusing it (Cooper, 2007). Theory The theory that I chose to guide my DCE project is Occupational Adaptation. The three components of Occupational Adaptation are the occupational environment, the person, and the interaction of the two as they come together in occupation (Schkade & Schultz, 1992). Occupational Adaptation is a way of treating patients that uses a holistic, client-centered approach, by fostering a client-centered relationship that facilitates the patients adaptation and ownership of treatment goals and progress (Jack & Estes, 2010). With this theory, occupational therapy considers a patient's roles, environmental factors, patient and family goals, concerns, and the desired level of occupational performance (Jack & Estes, 2010). Primarily, hand therapy clinics are focused on a more biomechanical approach to treating patients. In an article by Chan & Spencer, occupation-based interventions were linked to enhanced patient outcomes (2004). For my DCE project, I am creating pediatric resources that are available for therapists to use at the Indiana Hand to Shoulder Center. In the past, most handouts given to the pediatric population were adult handouts with a more biomechanical approach to treatment. The goal of my project is to create handouts that are geared toward the pediatric population and consider a child's role, goals, desire for occupational performance and their main occupation, play. The interventions on the handouts are fun, and motivating activities that will help the child work toward their therapy goals but not feel like they are doing therapy. Another reason that I chose Occupational Adaptation as the theory to guide my project is due to the consideration of both the patient and family's goals for occupational performance. Parents are an intricate part of a child's progress in therapy. When choosing activities for the handouts, it was important to consider activities that 8 parents would easily be able to replicate with their children outside of the therapy setting. This included activities that utilized common household items and toys, or items that are very affordable for parents to purchase. By creating handouts that use interventions that are motivating, client-centered, and consider parents' role in treatment, the Indiana Hand to Shoulder Center can work to enhance patient outcomes of the pediatric population. Project Design & Implementation After completing the needs assessment, and meeting with my site coordinator, I identified a lack of resources at the Indiana Hand to Shoulder Center specific to the pediatric population. According to Danielle Sparks (rehab manager), the therapy clinic sees approximately 30,000 patients a year. These patients can be of any age and with any type of injury, but the average age of patients is currently between 35-55 years old (personal communication, February 26, 2021). In the past few months, a surgeon at the Indiana Hand to Shoulder Center has increased her caseload of pediatric patients creating the need for pediatric hand therapy treatment on site. Previously, there have been very few pediatric clients treated at the clinic so there was a lack of resources available specifically geared towards the pediatric population. With this increase in pediatric clients, the Indiana Hand to Shoulder Center is looking to create practice resources focused specifically for the pediatric population. These resources will be similar to the adult hand-outs that are used at the location which are focused on home exercise programs, edema control, pain management, and wound care. The pediatric resources will include evidence-based interventions that are affordable for families to buy and incorporate fun, play-based activities to help the pediatric population meet their therapy goals while being intrinsically motivating. Another need identified was the lack of intervention boxes that can be used at the two locations that service pediatric patients. These boxes will include evidence-based intervention items that 9 can be used during therapy sessions with the pediatric clients. The boxes should include affordable everyday items that the children can use for a home exercise program and the interventions should be enjoyable for the client to participate in and will be easy to implement at home. The first step in creating the project was to complete a literature review on pediatric hand therapy resources. In my literature search, I was able to identify common treatment interventions and protocol for treating pediatric patients. In my literature search I also found that throughout childhood, it is crucial to consider the role of the parent in the treatment plan. With this information, I formed a plan to create handouts that are geared towards the pediatric population but are easy for the parents and family to understand and allows them to easily carryover what is learned during therapy to the home setting. The next step for the project was to decide what resources were to be created. After meeting with my site coordinator, we decided it would be best to create a handout for interventions/education of the hand, wrist, elbow, forearm, and shoulder. These handouts include information on exercises that the child can complete as well as educational information for the parent to ensure that the child is working toward their individual therapy goals. The handouts will consist of exercises that can be completed with items that are common in households or are very affordable for parents to purchase. Each handout includes a picture and a description of between six to twelve activities that can work toward the child's therapy goals. The handouts also include a section labeled Additional Activities. This section includes a list of ideas that are not pictured on the handouts, giving parents additional activities for their child to engage in that continue to focus on their therapy goals. An example of this would be having a child play on the monkey bars in a park to work on shoulder range of motion. This section also includes tips and 10 tricks to make the activities more or less challenging depending on the child's progression. Refer to Appendix A for all of the completed handouts and activities. When creating the intervention bins, the goal was to include the items that are listed on the handouts so that they can easily be recreated in the therapy clinic. The items may seem like common household items, but they can be utilized in a way to facilitate play while work toward the child's therapy goal. Some of the items purchased were finger puppets, cotton balls, tweezers, hole punches, golf tees, marbles, and a variety of other items. For example, by placing golf tees in Play-Doh and having a child race a peer to see who can place the most marbles on the tee in a set amount of time, a child can work on their finger flexion and extension while have fun completing the task. See Appendix B for complete list of items purchased for the bins. Project Outcomes For my outcome measure, a pre and post-test survey was created on Google Form to measure the perception of success of pediatric resources created for the Indiana Hand to Shoulder Center. The survey consisted of four questions that rated the perceived success of the material and activities listed on the home therapy handout. The survey was given initially to the site coordinator and two site supervisors before any materials were distributed. Participants taking the survey were asked to answer on a Likert Scale from 1 (strongly disagree) to 5 (strongly agree). The survey questions are listed in Table 1. Table 1 Question 1 The handouts are formatted well, and activity instructions are easy to follow? 11 Question 2 Are the activities on the handouts appropriate for the pediatric population? Question 3 The activities on the handout are easily able to be recreated outside of the therapy clinic? Question 4 The activities on the handouts are more effective in achieving a range of motion/strength goals compared to typical stretches? Once the final handouts were complete, the survey was distributed to other occupational therapists at the facility, as well as to parents of pediatric patients being seen at the facility, to measure the perceived success of the handouts. The survey was administered to a total of 12 therapists, and 5 parents. The result of the survey is listed in Table 2. Table 2 Average Survey Response for Handouts Likert Scale 6 4.8 5 5 4.8 4.6 4.75 4.8 4.75 4.6 4 3 2 1 0 1 1 1 1 2 1 3 4 Question Pre Post Parents At the end of the Survey there was a section for Additional Comments related to the handouts. Some of the comments from therapists on the survey were Having resources geared toward play with children is very helpful! This will be so nice to have in the clinic, and The 12 handouts look great! It is challenging to get kids to participate in therapy sometimes, but these activities look very motivating for little ones. A comment from a parent was the handouts are easily understood by someone not in the field and I like the use of visuals, text explanations, and blank space for additional info/ideas. Another survey was used to measure the effectiveness of the intervention bins that were created. The survey was administered to three therapists at the Indiana Hand to Shoulder Center. The survey contained four questions listed in Table 3. Table 3 Question 1 The pediatric bins contain all of the necessary items for both locations? Question 2 The items in the bin are appropriate for the pediatric population and can be used to facilitate play as an intervention? Question 3 The items in the bins are used in interventions that are listed on the handouts so that therapists can replicate home exercise programs in the clinic? Question 4 The items in the bins will be beneficial in treating pediatric patients at the site in the future? Comments from the therapist were I love the items that are in the kits! These will be so useful to have in the clinic, I really like how we can use the items in the bins to replicate what is on the home exercise sheets, and thank you so much for your time and effort with making 13 these bins. The bins will be a great addition to the facility and help us tremendously as we continue to grow our pediatric caseload. The results of the survey are listed in Table 4. Average Survey Response for Pediatric Bins 5.1 5 5 5 Likert Scale 4.9 4.8 4.66 4.7 4.66 4.6 4.5 4.4 1 2 3 4 Question Number Series 1 Summary The Indiana Hand to Shoulder Center is the largest hand therapy center in the United States and sees patients from a variety of backgrounds and conditions. Following the addition of a new surgeon who specialized in pediatric hand surgery, an increase in pediatric patients is being seen in the therapy clinic. With the previous caseload primarily being the older population, a need for pediatric therapy resources was identified. Through completing a thorough literature search and discussing the needs of the therapy department, a plan was identified for creating the appropriate resources. Resources created include handouts with exercises for the wrist, finger & thumb, elbow, forearm, and shoulder. The resources are different from the adult handouts as they contain activities that consider a child's main occupation of play. Along with the handouts, pediatric 14 intervention bins were created that contain a variety of items for the therapists to use during sessions. All items are listed on the handouts and each item is considered to be an item that most people have available in their household. The items may not appear like something that would be used in play but by creating fun games and activities for the child to engage in they can work toward achieving their therapy goals without using rote exercises. By creating the handouts and intervention bins, the Indiana Hand to Shoulder Center is now better equipped to treat their growing pediatric population. The facility can continue to utilize the resources and further develop them to meet the growing need for pediatric resources in the therapy department. In the future, the therapy department would benefit from expanding the gym to include an environment more appropriate and engaging for the pediatric population. Conclusion During the past 14 weeks, I was able to create pediatric hand therapy resources for the Indiana Hand to Shoulder Center. The resources consist of intervention activities that are fun and motivating for pediatric patients to engage in while working to restore range of motion and strength following an injury or surgery. The goal of the project was to focus treatment on the use of occupation-based intervention while maintaining the core biomechanical concepts of hand therapy. Through the process of creating intervention bins that contain items to be utilized in intervention sessions, therapists can easily replicate the activities listed on the handouts. Following this capstone experience, the Indiana Hand Center now has the appropriate resources to treat pediatric patients. Upon dissertation, the facility now has access to intervention bins that contain occupation based pediatric interventions as well as handouts to use for home exercise programs. Moving forward, it will be important for the Indiana Hand to Shoulder Center to continue to expand the resources available for pediatric patients. As the facility continues to 15 grow, there may be an additional need for an area in the therapy gym geared specifically toward the needs of the pediatric population. The resources created during my time at the Indiana Hand to Shoulder Center will be beneficial to therapists, patients, and the parents of the pediatric patients. 16 References American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 7412410010. https://doi.org/10.5014/ajot.2020.74S2001 American Society of Hand Therapists. (2015). About: What is hand therapy? Retrieved from https://www.asht.org/about Burley, S., Di Tommaso, A., Cox, R., & Molineux, M. (2018). An occupational perspective in hand therapy: A scoping review. British Journal of Occupational Therapy, 81(6), 299318. https://doi.org/10.1177/0308022617752110 Chan, J., & Spencer, J. (2004). Adaptation to hand injury: An evolving experience. The American Journal of Occupational Therapy, 58(2), 128139. https://doi.org/10.5014/ajot.58.2.128 Che Daud, A. Z., Yau, M. K., Barnett, F., Judd, J., Jones, R. E., & Muhammad Nawawi, R. F. (2016). Integration of occupation based intervention in hand injury rehabilitation: A randomized controlled trial. Journal of Hand Therapy, 29(1), 3040. https://doi.org/10.1016/j.jht.2015.09.004 Colaianni, D. J., Provident, I., DiBartola, L. M., & Wheeler, S. (2015). A phenomenology of occupation-based hand therapy. Australian Occupational Therapy Journal, 62(3), 177186. https://doi.org/10.1111/1440-1630.12192 17 Colaianni, D., & Provident, I. (2010). The benefits of and challenges to the use of occupation in hand therapy. Occupational Therapy In Health Care, 24(2), 130146. https://doi.org/10.3109/07380570903349378 Cooper, C. (2007). Pediatric Hand Therapy . Fundamentals of hand therapy (pp. 483521). Essay, Mosby. Hand Therapy & Splinting for Children . (2021) Physical Therapy | Pediatric Hand Therapy & Splinting | Beaumont Health. (2021). Retrieved December 21, 2021, from https://www.beaumont.org/treatments/hand-therapy-for-children Hines, D., York, K., & Kaul, E. (2020). Optimizing compliance with home programming through neuroplasticity education among parents of children receiving outpatient OT. The American Journal of Occupational Therapy, 74(4_Supplement_1). https://doi.org/10.5014/ajot.2020.74s1po3133 Indiana hand to shoulder therapy center (n.d.). Indiana hand to shoulder center. Retrieved March 5, 2021, from https://www.indianahandtoshoulder.com/therapy Jack, J., & Estes, R. I. (2010). Documenting progress: Hand therapy treatment shift from biomechanical to occupational adaptation. American Journal of Occupational Therapy, 64, 82 87. http://dx.doi. Org/10.5014/ajot.64.1.82 Lake, A. (2010). Hand therapy for children with congenital hand differences. Techniques in Hand & Upper Extremity Surgery, 14(2), 7884. https://doi.org/10.1097/bth.0b013e3181d79f2e 18 Melvin, J. L. (1985). Roles and functions of occupational therapy in hand rehabilitation. The American Journal of Occupational Therapy, 39(12), 795798. https://doi.org/10.5014/ajot.39.12.795 Phillips, E., Tounas, E., Waack, M., & Traetow, K. (2019). Evaluating current trends of occupationbased practice in the hand-therapy setting. The American Journal of Occupational Therapy, 73(4_Supplement_1). https://doi.org/10.5014/ajot.2019.73s1-po7035 Peck-Murray, J. (2015). Utilizing everyday items in play to facilitate hand therapy for pediatric patients. Journal of Hand Therapy, 28(2), 228-232. http://dx.doi.org/10.1016/j.jht.2014.05.003 Rostami, H. R., Akbarfahimi, M., Hassani Mehraban, A., Akbarinia, A. R., & Samani, S. (2016). Occupation-based intervention versus rote exercise in modified constraint-induced movement therapy for patients with Median and ulnar nerve injuries: A randomized controlled trial. Clinical Rehabilitation, 31(8), 10871097. https://doi.org/10.1177/0269215516672276 Schkade, J. K., & Schultz, S. (1992). Occupational adaptation: Toward a holistic approach for contemporary practice, part 1. The American Journal of Occupational Therapy, 46(9), 829837. https://doi.org/10.5014/ajot.46.9.829 19 Appendix A 20 21 22 23 24 25 26 27 28 29 30 31 32 Appendix B Items to purchase for Bins 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. Tennis Balls Construction Paper Cotton Balls Paper Plates Balloons Sponge Hole punch (small kids size) Finger Twister Marbles Golf Tees Toilet Paper Roll Bubble Wrap/Pop-It Fidget Toy Pasta Deck of cards Stamps Syringe Clothespins (plastic) Slinky Wiffle ball Finger puppets Small ball Basketball hoop Dominos Laser pointer Thin sheer scarf Tweezers Week 1 DCE Stage (orientation, screening/evaluatio n, implementation, discontinuation, dissemination) Orientation Weekly Goal 1) Complete orientation 2) Complete Needs Assessment Objectives Meet with educator. Educate on what the plan for DCE is. Understand the environment. Learn the operation of practice. Become familiar with the facility. Tasks Set up meeting with Danielle for following week to discuss project. Set up meetings with Katie for rest of semester. Study UE anatomy and become familiar with common diagnosis and splints. 2 Screening/Evaluatio n 1) Better understand project and what needs to be accomplishe d. 2) Finalize MOU Go to Fishers and see pediatric patients. Meet with Danielle to better understand needs of project. Identify outcome measure. Review MOU and outcome measure identified with site mentor. Date complet e 33 34 3 4 Screening/Evaluatio n Screening/Evaluatio n 1. Identify FOR or theory to guide project 2. Complete introduction draft. 1. Identify any changes that need to be made with timeline of project. 2. Treat 3 patients. Spend time at facility becoming familiar with what pediatric material is needed. Complete introduction. Make any changes needed to project as identified by faculty mentor or site mentor. Become confident with diagnosis to treat patient. 5 6 Implementation Implementation 1. Create one resource for facility on pediatric hand therapy. 2. Create one intervention to be used 3. Treat 5 patients Identify topic and create resource needed. 1. Create/impro ve one resource for facility on pediatric hand therapy. 2. Create/impro ve one Identify topic and create resource needed. Make changes to resource created previously. Prepare for clients and understand diagnosis and progression. Meet with Danielle Turn in Introduction Start to document patients. Complete draft of background Meet with Danielle Treat and document patients. Complete project draft Meet with Katie Meet with Danielle to make any changes needed to resources. 35 intervention to be used Treat 5 patients 7 8 9 Implementation Implementation Implementation 1. Create/impro ve one resource for facility on pediatric hand therapy. 2. Create/impro ve one intervention to be used 3. Treat 7 patients 1. Create/impro ve one resource for facility on pediatric hand therapy. 2. Create/impro ve one intervention to be used 3. Treat 9 patients 1. Create/impro ve one resource for facility on pediatric hand therapy. 2. Create/impro ve one intervention to be used 3. Treat any appropriate client. Prepare for clients and understand diagnosis and progression. Complete midterm Assess progress toward goals and objectives on MOU. Complete summary written reflection Work on powerpoint and complete voicethread. Meet with Danielle for midterm Meet with Katie for project. Turn in summary written reflection Voicethread and powerpoint due Work on assessment Meet with Katie Work on method section based on changes needed by faculty advisor Meet with Danielle 36 10 11 Implementation Implementation 1. Create/impro ve one resource for facility on pediatric hand therapy. 2. Create/impro ve one intervention to be used 3. Treat any appropriate client. Create plan for disseminatio n Turn in outcomes 1. Create/impro ve one resource for facility on pediatric hand therapy. 2. Create/impro ve one intervention to be used 3. Treat any appropriate client. Finalize disseminatio n plan Meet with Danielle Make changes needed for Finalize each outcome, make needed resource or intervention. changes to submit draft. Become more Finalize any resources or comfortable intervention with more unique ideas conditions to needed. treat. Ensure that both project and experience goals are met. Ensure that no more things are needed from site. Work on disseminatio n plan. Continue to work and make changes on outcomes, abstract, summary, and conclusion. Submit disseminatio n plan. 12 Implementation 1. Create/impro ve one resource for facility on pediatric hand therapy. 2. Create/impro ve one Work on outcomes Finalize disseminatio n plan Complete outcomes, and any parts of paper that are not complete. Work on any unmet goals Create dynamic 37 13 14 Discontinuation Dissemination intervention to be used 3. Treat any appropriate client. 1. Make disseminatio n plan 2. Continue to treat patients. 1. Complete Final 2. Disseminate project. splint for patient Finalize any loose ends at site. Ensure that goals are met. Make sure post assessments are complete. Finish paper. Finalize parts of paper. Work on draft for abstract, summary, and conclusion. Disseminate project to site. Meet with Katie Complete Final Site Evaluation Finalize anything at site. Meet with Danielle Complete Final  ...

... The Development and Implementation of Sensory Corners in a School-Based Setting Jordan Bentley, OTS May, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Taylor Gurley, Assistant Professor DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 2 Abstract This doctoral capstone project fills the current gap in educational programming for students to meet their individual sensory needs more quickly and effectively. This program creates sensory corners and strategies for five students (Students A-E) who demonstrate sensory processing, self-regulation, and coping difficulties to teach them how to overcome these difficulties constructively. To measure their improvement, the Sensory Profile-2 School Companion (SPSC) and the School Anxiety Scale-Teacher Report (SAS-TR) were used as preand post-tests to assess their sensory processing and anxiety/psychological stress. Students A-E all demonstrated improvement in at least one area of sensory processing on the SPSC. On the SAS-TR, Students D and E demonstrated improvement in their scores, however, Students A, and C showed worse scores and Student B showed no change. This project suggests the overall efficacy of sensory corners and strategies in reducing sensory dysfunction in students to improve engagement with their learning environment. DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 3 The Development and Implementation of Sensory Corners in a School-Based Setting Brownsburg Community School Corporation (BCSC) is a hub for education and learning for children of all ages, backgrounds, and health concerns. This site houses students with learning disabilities and those receiving special education services under the Individuals with Disabilities Education Act (IDEA) (2020 [Students with disabilities]). S. Borem (personal communication February 26, 2021) expressed that the district utilizes occupational therapy (OT) services to assist some of their students as part of their Individualized Education Plan (IEP). Additionally, S. Borem (January 13, 2021) indicated multiple weaknesses of both Brown Elementary and the school district at large. She explained that many of these weaknesses are a result of the following: the residual effects of COVID-19, a lack of appropriate educational programming for students, and little to no time availability for the therapy staff to take on additional projects because of large caseloads. These weaknesses create threats to the BCSCs ability to promote academic success. The residual effects of COVID-19 have left vacancies in special education administration and negatively impacted staff and student attendance due to the need to quarantine for the health safety of others within the school community. When students have to quarantine at home, they miss out on receiving their therapy/special education services as mandated by their IEP, which may cause difficulty maintaining IEP compliance by those staff members who provide therapy/special education services. Additionally, the increased vacancies in staff positions lead to a disproportionate ratio of special education students to staff members. This disproportionate ratio leads to poor staff work-life balance due to the need to work increased hours to make up for the lack of staffing. By completing this doctoral capstone project, I would fill a gap in educational programming for students that the OT staff cannot fill due to their lack of time resulting from DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 4 their large caseloads. This educational programming (i.e., sensory corners) will reduce the number of additional times students on the occupational therapists caseloads need to be pulled out of class for sensory breaks. As a result, this will increase the time available for the OT staff to complete other necessary tasks such as finishing evaluation reports, conducting assessments, and attending more annual case reviews (ACR). Frequently, therapists have to stay late to complete various related paperwork or reports, and this project also has the potential to lead to increased staff work-life balance for OT staff. This project will provide a program to meet the sensory needs of students that may not be fully met by the occupational therapists lack of time, which will also increase IEP compliance and the meeting of student therapeutic and educational goals more quickly and effectively. Background Pro-Sensory Integration Camp According to the literature, there are two main camps regarding sensory integration therapy/sensory-based interventions and its effectiveness. One claims it is effective (i.e., prosensory integration therapy), while the other claims that there is little support from sound research (i.e., anti-sensory integration therapy). Within the pro-sensory integration camp, research shows its usage within different settings, including various pediatric settings (i.e., schools, early intervention, community-based) and adult settings. It is interesting, however, that a vast majority of the literature is limited to children, especially children with Autism Spectrum Disorder (ASD) and/or Attention Deficit Hyperactivity Disorder (ADHD), as these are two of the most commonly discussed groups when referring to sensory-based therapy within OT. Regarding schools, sensory integration therapy and sensory-based strategies are utilized by teachers and OTs working with preschool and school-aged children with disabilities and/or sensory DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 5 dysfunction. The literature indicates that often teachers and OTs working with this population claim that sensory integration strategies are effective in reducing hyperactivity, unwanted behavior/behavioral outbursts, and sensory dysfunction of children with disabilities or sensory dysfunction, thereby dramatically improving classroom behavior as a result (Chien-Lin, et al., 2012; Mills & Chapparo, 2018; Paul et al., 2003). This information presents an excellent opportunity to use a unique form of sensory integrative techniques within classroom sensory corners to reduce sensory dysfunction within students and their associated psychological stress, anxiety, and adverse behavioral reactions. Additionally, research expresses that sensory integration interventions appear to increase the concentration, participation, academic performance, improved overall function of this population (Mills & Chapparo, 2018; Mills et al., 2016; Paul et al., 2003; Piller & Pfeiffer, 2016; Stonefelt & Stein, 1998). A classroom sensory corner with the proper sensory equipment poses a way to facilitate positive outcomes in the students they would serve (i.e., students with sensory dysfunction in a general education classroom) that would directly impact their educational experience. Therapists also often utilize sensory integration in early intervention and community settings. Research suggests that sensory-enriched early intervention programs reduce delays in critical areas of development such as motor skills, language, and cognition (Blanche et al., 2016). Sensory-based early intervention programs may also increase engagement in play and participation in other occupations in children with sensory dysfunction as well as co-existing diagnoses (Blanche et al., 2016). The usage of sensory-based strategies in the early intervention setting embodies the concept that effective modulation of sensory input is critical for proper development in all areas (cognitive, physiological, neurological, fine/gross motor, social/emotional, etc.). If this is true, this supports the usage of sensory strategies within a DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 6 classroom with children who may have developed atypically (i.e., have sensory dysfunction) and require a sensory-driven approach to their school-based OT services; this will assist them in learning how to regulate their receptivity to sensory stimuli. Literature has also commented on the usage of sensory integration to enhance the participation of adolescents with disabilities in activities within a community setting. Research suggests that changing an adolescents environment can improve their participation in occupations/activities (Anaby et al., 2018). This is done by determining barriers to occupational participation and identifying strategies to remove those barriers; this directly impacts their personal motivation (Anaby et al., 2018). This idea of changing a persons environment is a simple yet effective way to broaden a persons range of ability to increase their occupational performance. This idea will be a common theme throughout the development of my project because this theoretically concludes that making modifications to a students environment (i.e., installing a sensory corner) and supplying the student with the necessary tools they need (i.e., sensory equipment), they will be able to modulate their sensory input. By modulating their sensory input, the student will reach a typical threshold for sensory regulation to better function within their classroom environment without their psychological stress, anxiety, and negative behavior stemming from their nervous system over-responding or under-responding to their surroundings. The most current research indicates that sensory-based interventions are successful treatment tactics when used with adult populations, specifically those with disabilities. Research has found a decrease in challenging behaviors in adults with disabilities in a community-based setting through environments constructed to include specific sensory stimuli (McGill & Breen, 2020). Based on this information with adult populations, creating environments may reduce DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 7 behavioral concerns by creating environments that are sensitive to an individuals sensory needs and letting them have some control over that environment. Giving an individual the ability to make choices when presented with options in a therapeutic environment often increases their receptivity to certain therapeutic tactics and often increases compliance with the therapeutic process. By giving a child multiple options of sensory equipment or strategies to choose from that still provide them with the necessary input they need to regulate their nervous system properly, they will be more inclined to participate with the sensory corners and learn different ways to independently cope with sensory input through usage of different equipment or strategies. Lastly, literature supports the pro-sensory integration camp emphasizing environmental change to effectively use sensory-based interventions to facilitate positive results with individuals with disabilities, especially children. Researchers have found that a childs general sensory responses and their sensory responses to the environment impact their overall levels of participation (Pfeiffer et al., 2017; Unwin et al., 2021a). Additionally, implementations of sensory modifications to certain environments can reduce psychological distress in children, which leads to their overall improved participation and reduction in avoidant behavior (Bodison & Parham, 2018; Piller & Pfeiffer, 2016; Unwin et al., 2021b). Furthermore, it has been suggested that multi-sensory environments positively impact behavior, attention, and mood, as well as emotional support regulation (Unwin et al., 2021a; Hetherington et al., 2021). This information concludes that by increasing or decreasing the number of sensory modifications to an individuals environment, a therapist could increase or decrease their level of participation and avoidance of certain activities. This directly translates to grading the intensity of therapeutic interventions. My project will use this tactic to determine the correct amount of sensory DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 8 stimulation to give a child a just right challenge to learn good self-coping and self-regulation skills. Based on all the information presented, it can be concluded that these designated sensory areas will work to fulfill Brownsburgs need for a way to assist children of this nature with their sensory needs without disrupting their learning in the classroom. Current literature, more specifically research published within the last 1-2 years, suggested positive outcomes when using sensory rooms or multisensory spaces with various populations. Dorn et al. (2020) indicated that the use of sensory rooms in adult mental health rehabilitation units produces positive patient arousal changes leading to increased occupational engagement. Dorn et al. (2020) also implemented a wide range of sensory equipment to obtain the previous results that addressed auditory, visual, tactile, proprioceptive, olfactory, and gustatory stimulation. In another article, Asojo et al. (2021) discuss a community engagement partnership program between the University of Minnesota Extension Children, Youth, and Family Consortium and Bruce Vento Elementary School to develop a calming room with various sensory equipment to increase self-regulation in elementary school students. The researchers then interviewed teachers and staff within Bruce Vento Elementary School about the calming rooms impact on the students and the overall school environment (Asojo et al., 2021). These teachers and staff expressed that the calming room supported students in returning to class sooner; it improved the overall school environment, student self-regulation, and increased physical safety (Asojo et al., 2021). Cavanagh et al. (2021) installed a Sensory-Art Space in a university in NSW, Australia that acted as a multisensory space providing calming tactile, olfactory, visual, and auditory stimulation to adults in a non-clinical setting. It is suggested that this multisensory space leads to increased personal affect and decreased negative affect and perceived stress of the participants who utilized it (Cavanagh et al., 2021). Lastly, Mills et al. DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 9 (2020) evaluated the effectiveness of a sensory activity schedule used in a school setting with children with autism. The researchers concluded that the children implementing the sensory activity schedule demonstrated significant improvements in classroom task performance. Anti-Sensory Integration Camp Compared to the research supporting the pro-sensory integration camp, there is also significant research that supports the opposing side of this argument, otherwise considered to be the anti-sensory integration camp. One can appreciate that although the literature has praised the usage of sensory integrative interventions and strategies, they must consider this information with caution. Many studies and systematic reviews have determined that pro-sensory integration studies lack sound methodological components, which questions the validity of these studies in all aspects (Bodison & Parham, 2018; Case-Smith et al., 2015; Stonefelt & Stein, 1998; Van der Putten et al., 2011). Furthermore, pro-sensory integration studies often have to indicate their methodological flaws in their limitations section and advise readers to consider their results with scrutiny (Anaby et al., 2018; Chien-Lin et al., 2012; Grace, 2020; Mills & Chapparo, 2018; Mills et al., 2016; Paul et al., 2003; Pfeiffer et al., 2017; Piller & Pfeiffer, 2016; Stonefelt & Stein, 1998; Van der Putten et al., 2011). This lack of proper methodology requires me to understand the possibility that my project will not produce a positive outcome with the students my sensory corners will attempt to serve. Issues with maintaining proper methodology within pro-sensory integration experimental studies are due to two main concerns with study design stemming from an overarching reality present in the literature. The overarching reality is that every client with sensory dysfunction presents with different sensory processing difficulties, and they often require vastly different interventions to meet their specific needs to properly modulate sensory information. This reality DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 10 leads to one issue in creating a standardized experimental protocol consisting of sensory integration therapy and sensory-based interventions because of the wide range of needs for each participant/client that may not respond to a single level sensory-integrative or sensory-based experimental protocol (Case-Smith et al., 2015; Mills et al., 2016). It can be theorized that a standardized approach to sensory-based therapy in any setting, such as school-based OT, is potentially impossible to create as each client with sensory dysfunction requires an effective approach of an individualized nature that is tailored to them rather than utilizing a one-size fits all approach. It also leads to another issue: it is unethical and impossible to assign varying levels of sensory dysfunction presentation to participants in an experimental study (Paul et al., 2003). Because of both of these factors, one can appreciate that it is near impossible to create a comprehensively appropriate, standardized protocol for a control group and clinically even experimental group of participants with sensory dysfunction to determine the effectiveness of sensory integration therapy or sensory-based interventions. One could propose that these circumstances prevent the creation of any gold standard method in support of the pro-sensory integration argument that can truly confirm the effectiveness and benefits of sensory-based strategies when used in any therapeutic setting. Few studies have come close to the gold standard of research that is a randomized control trial, which demonstrates an inability to compare the results of pro-sensory integration studies as the study designs are not sound (Davidson & Williams, 2000). Since there is no gold standard for sensory integration implementation, I will be hand-selecting all sensory equipment for each student to use based on their level of sensory dysfunction and what sensory equipment will best facilitate a reduction in anxiety and psychological stress. All this information against sensory integration encourages me to utilize an outcome measure before and after the projects implementation to DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 11 include a standardized, methodological component. Another way I could potentially create more of a standardized approach would be using the same sensory equipment for children who present similarly in terms of the level of dysfunction, need preferred/undesired type of stimuli, etc. However, this would take away the individual nature of this form of OT and could potentially reduce the benefit those students would experience. This information is critical and should be considered when developing my sensory corners. This will help me identify sensory integrative tactics that have the most support compared to those with little or no evidence to back the reasoning for their usage among OTs in practice. Occupational Theory and Frame of Reference To guide my doctoral capstone experience (DCE) and project is the Ecology of Human Performance (EHP) occupation-based model and the Sensory Integration (SI) frame of reference. I chose these theories because they can be effectively intertwined to facilitate increased sensory integration leading to more successful task performance (Cole & Tufano, 2008). Oftentimes students with disabilities have increased difficulty with sensory processing and integration with input from their school environment, which may often manifest into behavioral issues, heightened anxiety, and reduced academic performance. Students with an inability to effectively integrate and process sensory input may be exacerbated by an environmental context that is not supportive enough to assist them in resolving these issues. When these students environmental context (i.e., their classrooms) are too constrictive, this results in a smaller performance range to complete their necessary tasks (i.e., their academic responsibilities) (Cole & Tufano, 2008). Additionally, their personal constructs consist of these reduced abilities and skills related to managing sensory input as well as their negative experiences related to the incoming sensory information (Cole & Tufano, 2008). DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 12 My visual diagram embodies aspects of both the EHP model and SI frame of reference in how I approached my project when working with students with sensory processing and integration difficulties (see Figure 1). The chaotic personal construct of these students resulting from their sensory dysfunction causes these students to feel as though they are in a mental web of confusion and frustration (Cole & Tufano, 2008; Watkins, 2020). They, in a sense, begin to feel overwhelmed with all the incoming sensory stimuli as they are not able to appropriately regulate their reception of this information. My project took on the EHP concept of adapting their environmental contexts (i.e., classrooms) by incorporating sensory corners where they could receive the necessary sensory input or break from the increased input. As a result, this broadens their performance capacity to complete their educational responsibilities, leading them to learn appropriate sensory processing/integration strategies and coping skills to relieve anxiety and frustration because of sensory stimuli. Some of the students in this project were either hyporesponsive or hyperresponsive to certain sensory input, and it was crucial to be aware of their individual needs to provide appropriate types of sensory equipment that they can use to assist them in regulating their response to certain stimuli. My DCE required me to be aware of other possible external factors that may constrict these students environmental contexts as these may also impact their sensory processing and integration strategies. Lastly, I educated the teachers on how to be supportive of the sensory corners and how they will enhance these students learning experiences and overall educational success. Explanation of the DCE Project The building of sensory corners within a classroom environment will achieve three things to address the needs that were previously discussed. First, it will help kindergarten-2nd grade general education students with sensory needs and IEPs meet their therapeutic and educational DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 13 goals, increase their academic participation and self-sufficiency, and learn proper coping and self-regulation skills. Second, it will educate staff/teachers about self-regulation and provide feasible sensory tools/strategies for them to utilize in their classrooms. Lastly, it will advocate for the OT profession and the overall acceptance of sensory-based interventions. The six students that will be using the sensory corners all present with sensory needs and are eligible for therapy/special education services either by diagnosis or eligibility criteria (see Appendix A). These sensory corners will contain and implement individualized sensory equipment/tools and strategies to facilitate increased self-regulation and coping skills within these students. My project is different from the literature in that many of the projects completed in support of sensory integration methodology utilized different sensory rooms that require complete removal of the individual. In contrast, I aim to build these sensory areas within the classrooms to minimize the amount of time a student spends out of class to fulfill sensory needs such as completing movement breaks, spending time using fidgets or a weighted vest, deep breathing, etc. Project Design and Implementation This DCE project is a true representation of my passion for school-based occupational therapy and working with children who have sensory integration/regulation difficulties. I noticed how much of a need there is to be filled with these kinds of children to set them up for success later in life. Within Brownsburg, there are many students that receive occupational therapy services to address their sensory needs and it appears that the therapy staff do the best they can for their students. As I mentioned previously, the therapy staff struggles with increased time and availability to donate to creating other effective projects involving extensive amounts of DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 14 research. This project was developed to bridge the gap between these needs and increase the students abilities to monitor and fulfill their sensory needs independently. To assess each students needs to help me construct the sensory corners in their classrooms, I asked the students classroom teachers to complete the Sensory Profile 2 - School Companion (SPSC) and School Anxiety Scale-Teacher Report (SAS-TR) assessment tools. The SPSC and SAS-TR have an internal consistency Cronbach alpha coefficient of 0.94 and 0.93, respectively (Brown et al., 2010b; Lyneham et al, 2008a). The SPSC has a moderate-to-good intra-class correlation range of .66 to .93, while the SAS-TR has an intra-class correlation of .78 (Brown et al., 2010a; Brown et al., 2010b; Dunn, 2014; Lyneham et al., 2008a). The literature indicates that the SAS-TR assessment has an internal consistency for the total anxiety score of 0.93 and satisfactory test-retest reliability (Lyneham et al., 2008a; Syriopoulou-Delli et al., 2018). The generalized anxiety and social anxiety subtest scores had an internal consistency score of 0.90 and 0.92, respectively (Lyneham et al., 2008a). The intraclass correlations for the total anxiety, generalized anxiety, and social anxiety scores were .78, .73, and .81, respectively (Lyneham et al., 2008a). The SAS-TR has also demonstrated evidence of convergent validity through strong correlations with other teacher report questionnaires (Lyneham et al., 2008a). The SPSC is a standardized test that requires the respondent (i.e., teacher) to rate the frequency of behaviors resulting from the students sensory processing difficulties (Brown et al., 2010b). This information provides great insight into whether a child may be sensory seeking or avoiding, sensitive to sensory input, and/or able to register sensory information from their environment (Dunn, 2014). The SPSC also provides school factor scores which reflect the teachers view of the student as a learner in the classroom (Dunn, 2014). These factors are the students need for external support, their awareness and attention, their tolerance, and their DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 15 availability all in relation to the learning environment (Dunn, 2014). This information helped me determine the most appropriate sensory tools to add into their sensory corner and/or activities to add into their movement breaks. The SAS-TR aims to target the behaviors and feelings distinctive to the experience of anxiety (Lyneham et al., 2008a). This also addresses the teacher's perspective of how the childs level of generalized and social anxiety is impacted by various school-related tasks and activities, such as asking questions in class, being shy, volunteering answers/comments in class, etc. (Lyneham et al., 2008b; Lyneham et al., 2008c) For my project, I used the information obtained from this questionnaire to assess the childs level of anxiety and psychological stress that is present at school. Although I knew that these students would not qualify on the SAS-TR as having clinical general or social anxiety, I wanted a general understanding of what school situations cause them increased stress as this may either be due to sensory processing difficulties and/or the students lack of confidence. Furthermore, this information would help me determine how many calming components to include in the sensory corners and/or with a students movement breaks for them to utilize. For my project, I am working with five students who demonstrate sensory processing, self-regulation, and coping difficulties and teaching them how to overcome these difficulties constructively by using sensory corners and sensory strategies. At the beginning of the projects implementation period, I worked with each student during ideal times for breaks in their day schedule and during their school occupational therapy sessions to educate them on how to utilize the sensory corner and related strategies when needed. These sensory corners had individualized sensory equipment and strategies (e.g., movement breaks) as well as visuals related to the zones of regulation, exercise activity cards, deep breathing cards, I need a break! cards, and a visual DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 16 indicator related to the number of breaks that have yet to be taken (see Figures 1 and 2). Some of the sensory equipment included, but are not limited to, wiggle cushions, fidgets, squishy balls, weighted lap pads, and therapy bands (see Figures 3 and 4). These sensory corners were not to be overly elaborate initially due to the limited space in classrooms and finances related to having to obtain other items that were more expensive (see Figure 5). Some challenges that I faced with initiating the project were the timing of when my SPSC assessment forms came in the mail as they came in later than anticipated due to being on backorder despite having been ordered prior to arriving at Brown Elementary for my DCE. However, these came in early enough to still begin my implementation period in a timely manner. Another challenge was that two of the students struggled with some of the bilateral coordination exercises that I had planned for them to use during their movement breaks. This required me to find other bilateral coordination activities that were appropriate and were easy for them to understand. A third challenge was that my site mentor was unsure whether the students I was working with for the sensory corners would fully grasp how to navigate them due to their ages, so I had to work hard to modify my language with the students to facilitate understanding at their age level. Lastly, the sensory corners that I envisioned installing in my head were not how they appeared initially due the extensive time I had to wait for additional supplies to get in from an Amazon order, which was another challenge. I did also have a few major successes at the beginning of the implementation period. The first was that one of the students executed a full sensory break by himself using my protocol the first day it was introduced to him in his classroom without adult assistance. The teacher indicated that he did extremely well and that it was very helpful for him. Another student had a major meltdown in his classroom while I was setting up the sensory corner with his activities and the DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 17 teacher mentioned to me that I could try to use my protocol with him. I worked with him to execute his sensory break by completing his exercise activity cards and then sitting on a wiggle cushion with a fidget, therapy band, and a weighted lap pad. This student indicated to me that he was able to move from the red zone to the green zone by the time he had to go back to the classroom activity. Later, another student who was to utilize my sensory corner program recognized me while I was in the classroom and came to me to indicate that he needed a break. He mentioned that he felt as though he didnt need to do exercises, but instead needed to calm down. He also spent some time using his calming items such as the weighted lap pad and fidgets. This student also mentioned that he felt much better after taking his calming break before returning to his classroom activity. Project Outcomes For the assessment component of this capstone project, I utilized the Sensory Profile-2 School Companion (SPSC) and the School Anxiety Scale-Teacher Report (SAS-TR) as my standardized assessments. The SPSC was a great tool to use as it assesses how a child responds to various sensory experiences within their school environment throughout the day (Dunn, 2014). It was great for the students I worked with because the information was reported by their classroom teachers who spend the most time with them during the school day in a classroom setting and have the most merit to provide information of this nature. As mentioned previously, the SPSC is a standardized questionnaire and it is designed for teachers to rate a student on a Likert scale from 0-5 where 0=Does Not Apply, 1=Almost Never, 2=Occasionally, 3=Half the Time, 4=Frequently, and 5=Almost Always. The assessment has a total of 44 items with items divided up and added to obtain 13 sensory area scores related to sensory needs, behaviors, and school factors. These raw scores are compared to a bell curve with descriptive categories representing their relation to the mean range. More specifically, scores within the Much Less DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 18 Than Others range are -2 SD below the mean, scores within the Less Than Others range are 1 SD below the mean, scores within the Just Like the Majority of Others range indicates the mean range, scores within the More Than Others range are +1 SD above the mean, and scores within the Much More Than Others range are +2 SD above the mean. My project results indicated that in comparison to the pre-test, all five of the students were reported to show improvements in at least one of their SPSC post-test scores in comparison to their pre-test SPSC scores (see Table 1). Student C demonstrated improvement in only one sensory area from his pre-test to post-test scores, however it was noted by this students teacher that the sensory corner and sensory strategies were extremely helpful for him and was effective in addressing his sensory needs. Student B demonstrated improvement in two sensory areas, but it was observed during the project implementation period that this student had great difficulty with understanding and processing the sensory corner protocol and sensory strategies. This explains his limited improvement between his pre-test and post-test scores. Students A, D, and demonstrated notable improvement in multiple sensory areas between their pre-test and post-test scores. More specifically, Students A, D, and E showed improvement in a total of 11, 6, and 9 sensory areas, respectively, out of a total of 13 areas on the SPSC. The SAS-TR was another great tool to use as it assesses the level of generalized and social anxiety (i.e. psychological stress) a student demonstrates within a school environment that is perceived by the classroom teacher (Syiopoulou-Delli et al., 2018). This assessment worked great with the Sensory Profile-2 to determine each students level of psychological stress and its relation to their sensory needs. This standardized assessment is a questionnaire for teachers to rate a student on a Likert scale from 0-3 where 0=Never, 1=Sometimes, 2=Often, and 3=Always. The assessment has a total of 16 items with items 1, 2, 4, 6, 11, 13, and 14 combined to obtain a generalized anxiety score and items 3, 5, 7, 8, 9, 10, 12, 15, and 16 combined to obtain a DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 19 socialized anxiety score. Both the generalized and socialized anxiety scores are also combined to obtain a total anxiety score. A higher score indicates more anxiety and psychological stress. From the beginning to the end of the project implementation period, Students D and E were reported by their classroom teacher to have reduced scores in the areas of generalized and social anxiety as well as the total anxiety categories (see Table 2). This indicated that these students demonstrated a decrease in anxiety and psychological stress. However, Students A and C were reported by their classroom teachers to have increased generalized, social, and total anxiety scores (see Table 2). Furthermore, this indicated that these students demonstrated increased anxiety and psychological stress. Student B was reported to have no change in their score in any of the three areas (see Table 2). In addition to the standardized assessments, I also utilized Microsoft Forms as an informal assessment to gain data. The Microsoft Forms were a great way to gain weekly information from the classroom teachers about how things went each week with the protocol as I am not in each classroom all day every day. I quickly figured out what components worked/did not work for each student and worked to modify each protocol as a result. From the beginning of the project implementation period to the end, the average number of times the five students used the sensory corner was one time per school day. The classroom teachers reported that the sensory corners were 60% effective while it was 40% neither effective nor ineffective among the five students (see Figure 6). The predominant reason for use among the students throughout the implementation period was difficulty with attention to task at 25%, emotional distress at 37%, and extraneous movement/passive inattentiveness at 38% (see Figure 7). Note that two students were reported to have two predominant reasons for use. Lastly, the classroom teachers reported that by the end of the project implementation period 4/5 of the students demonstrated a good understanding of the sensory strategies and sensory corner protocol. DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 20 Conclusions This doctoral capstone project explored the efficacy of sensory integrative interventions when incorporated into the classroom. The findings support the idea of increasing sensory integrative equipment and strategies within a students learning environment to improve sensory regulation and increase their ability to effectively interact with their learning environment. The Brownsburg Community School Corporation, more specifically Brown Elementary, ultimately gained multiple things as a result of this project. They gained a better understanding of the needs of some of their students as we found that some of the students that participated required more direction to effectively utilize certain sensory equipment and strategies while others could be more self-guided. A second thing they gained were new ideas on how to incorporate sensory integrative equipment and strategies into their classrooms in a way that allows for students to have their sensory needs met outside of their one OT session each week. Lastly, the occupational therapists within the school district at large gained a better understanding of new assessment tools to use as a part of their evaluation process of students and as well as new informal ways to collect data for the students on their caseload. Oftentimes in school-based practice, occupational therapists are only seeing a student on their regular caseload for 20-30 minutes per week due to their high caseload numbers. This reduces their ability to donate additional time to find effective solutions for students within the classroom to help them meet their sensory needs. The findings of this project suggest that sensory corners and sensory strategies may provide a more well-rounded approach to schoolbased OT and further advocates for the OT profession by emphasizing the benefits of using OT interventions within the classroom in this format. Summary DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 21 This doctoral capstone project aimed to address the notable lack in appropriate programs for students that address sensory dysfunction within a school environment. Literature related to sensory integration and intervention techniques as a whole struggle with generalizability, standardization, and sound methodology. Furthermore, it is difficult to create a gold standard when utilizing sensory integration as it prevents OT intervention from fully meeting the unique needs of each child. More specifically, their personal level of dysfunction and need for more or less of preferred/non-preferred stimuli to facilitate regulation. As a result, this project provided five students with individualized sensory equipment and strategies to make up their sensory corner protocol. The findings of this project suggest efficacy of sensory corners and sensory strategies when incorporated into a classroom environment to reduce sensory dysfunction. Additionally, these findings coincide with pro-sensory integration literature and with occupational theory in that they suggest this protocol leads to improvement of a students ability to engage further with their learning environment, which leads to overall greater academic success and progress in meeting the students therapeutic goals (i.e., improved occupational performance). This project also emphasizes the importance and benefit of OT through advocation for its furthered usage in a new format within the classroom as a way to meet the needs of Brown Elementary, Brownsburg school-based therapy staff, the BCSC, and the educational system at large, which are better ways to overall promote and support student success. DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 22 References Anaby, D. R., Law, M., Feldman, D., Majnemer, A., & Avery, L. (2018). The effectiveness of the Pathways and Resources for Engagement and Participation (PREP) intervention: Improving participation of adolescents with physical disabilities. Developmental Medicine & Child Neurology, 60(5), 513519. https://doi.org/10.1111/dmcn.13725 Asojo, A. O., Vo, H., Bae, S., Hetherington, C., Cronin, S., & Myers, J. (2021). Building community and fostering health and well-being through a collaborative school based project. Outpatient Care [Working Title], 119. https://doi.org/10.5772/intechopen.97525 Blanche, E. I., Chang, M. C., Gutirrez, J., & Gunter, J. S. (2016). Effectiveness of a sensoryenriched early intervention group program for children with developmental disabilities. American Journal of Occupational Therapy, 70, 7005220010. http://dx.doi.org/10.5014/ajot.2016.018481 Bodison, S. C., & Parham, L. D. (2018). Specific sensory techniques and sensory environmental modifications for children and youth with sensory integration difficulties: A systematic review. American Journal of Occupational Therapy, 72, 7201190040. https://doi.org/10.5014/ajot.2018.029413 Brown, T., Morrison, I. C., & Stagnitti, K. (2010a). The convergent validity of two sensory processing scales used with school-age children: Comparing the Sensory Profile and the Sensory Processing Measure. New Zealand Journal of Occupational Therapy, 57(2), 5665 DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 23 Brown, T., Morrison, I. C., & Stagnitti, K. (2010b). The reliability of two sensory processing scales used with school-age children: Comparing the response consistency of mothers, fathers, and classroom teachers rating the same child. Journal of Occupational Therapy, Schools, & Early Intervention, 3(4), 331347. https://doi.org/10.1080/19411243.2010.541775 Case-Smith, J., Weaver, L. L., & Fristad, M. A. (2014). A systematic review of sensory processing interventions for children with autism spectrum disorders. Autism, 19(2), 133 148. https://doi.org/10.1177/1362361313517762 Cavanagh, B., Haracz, K., Lawry, M., Wales, K., & James, C. (2021). Changes in emotions and perceived stress following time spent in an artistically designed multisensory environment. Medical Humanities, 47(4). https://doi.org/10.1136/medhum-2020-011876 Chien-Lin Lin, Yu-Fan Min, Li-Wei Chou, & Chin-Kai Lin. (2012). Effectiveness of sensory processing strategies on activity level in inclusive preschool classrooms. Neuropsychiatric Disease & Treatment, 8, 475481. https://doi.org/10.2147/NDT.S37146 Cole, M. B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach (1st ed.). Slack Incorporated. Davidson, T., & Williams, B. (2000). Occupational therapy for children with developmental coordination disorder: A study of the effectiveness of a combined sensory integration and perceptual-motor intervention. British Journal of Occupational Therapy, 63(10), 495499. https://doi.org/10.1177/030802260006301007 DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 24 Dorn, E., Hitch, D., & Stevenson, C. (2019). An evaluation of a sensory room within an adult mental health rehabilitation unit. Occupational Therapy in Mental Health, 36(2), 105 118. https://doi.org/10.1080/0164212x.2019.1666770 Dunn, W. (2014). Sensory Profile 2: User's manual. Psych Corp. Grace, J. (2020). Multisensory rooms: Essential characteristics and barriers to effective practice. Tizard Learning Disability Review, 25(2), 6775. Hetherington, C., Cronin, S., Langworthy, S., & Michaels, C. (2021). Creating learning environments to support students experiencing stress: Qualitative insights from an extension-community partnership. Journal of Human Sciences and Extension, 9(1), 156177. Institute of Education Sciences (2020). Students with disabilities. (NCES 2020144) National Center for Education Statistics. https://nces.ed.gov/programs/coe/indicator_cgg.asp#:~:text=(Last%20Updated%3A%20 May%202020),of%20all%20public%20school%20students Lyneham, H. J., Street, A. K., Abbott, M. J., & Rapee, R. M. (2008a). Psychometric properties of the School Anxiety ScaleTeacher Report (SAS-TR). Journal of Anxiety Disorders, 22(2), 292300. https://doi.org/10.1016/j.janxdis.2007.02.001 Lyneham, H. J., Street, A. K., Abbott, M. J., & Rapee, R. M. (2008b). School Anxiety ScaleTeacher Report. Macquarie University. https://www.mq.edu.au/__data/assets/pdf_file/0019/117730/SAS_TR_copyright_2015.pd f DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 25 Lyneham, H. J., Street, A. K., Abbott, M. J., & Rapee, R. M. (2008c). School Anxiety ScaleTeacher Report (SAS-TR) scoring template. Macquarie University. https://www.mq.edu.au/__data/assets/pdf_file/0003/117732/SAS_TR_Scoring_copyright _2015.pdf McGill, C., & Breen, C. J. (2020). Can sensory integration have a role in multielement behavioural intervention? An evaluation of factors associated with the management of challenging behaviour in community adult learning disability services. British Journal of Learning Disabilities, 48(2), 142153. https://doi.org/10.1111/bld.12308 Mills, C., & Chapparo, C. (2018). Listening to teachers: Views on delivery of a classroom based sensory intervention for students with autism. Australian Occupational Therapy Journal, 65(1), 1524. https://doi.org/10.1111/1440-1630.12381 Mills, C., Chapparo, C., & Hinitt, J. (2016). The impact of an in-class sensory activity schedule on task performance of children with autism and intellectual disability: A pilot study. British Journal of Occupational Therapy, 79(9), 530539. https://doi.org/10.1177/0308022616639989 Mills, C. J., Chapparo, C., & Hinitt, J. (2020). The impact of sensory activity schedule (SAS) intervention on classroom task performance in students with autism a pilot randomised controlled trial. Advances in Autism, 6(3), 179193. https://doi.org/10.1108/aia-05-20190015 Paul S, Sinen P, Johnson J, Latshaw C, Newton J, Nelson A, & Powers R. (2003). The effects of a sensory motor activities protocol based on the theory of sensory integration on children DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 26 diagnosed with preprimary impairments. Occupational Therapy in Health Care, 17(2), 1934. https://doi.org/10.1080/J003v17n02_02 Pfeiffer, B., Coster, W., Snethen, G., Derstine, M., Piller, A., & Tucker, C. (2017). Caregivers perspectives on the sensory environment and participation in daily activities of children with autism spectrum disorder. American Journal of Occupational Therapy, 71, 7104220020. https://doi.org/10.5014/ajot.2017.021360 Piller, A., & Pfeiffer, B. (2016). The sensory environment and participation of preschool children with Autism Spectrum Disorder. OTJR: Occupation, Participation & Health, 36(3), 103 111. https://doi.org/10.1177/1539449216665116 Stonefelt LL, & Stein F. (1998). Sensory integrative techniques applied to children with learning disabilities: An outcome study. Occupational Therapy International, 5(4), 252272. http://dx.doi.org.ezproxy.uindy.edu/10.1002/oti.80 Syriopoulou-Delli, C. K., Polychronopoulou, S. A., Kolaitis, G. A., & Antoniou, A.-S. G. (2018). Views of teachers on anxiety symptoms in students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49(2), 704720. https://doi.org/10.1007/s10803-018-3752-1 Unwin, K. L., Powell, G., & Jones, C. R. (2021a). A sequential mixed-methods approach to exploring the experiences of practitioners who have worked in multi-sensory environments with autistic children. Research in Developmental Disabilities, 118, 1-12. https://doi.org/10.1016/j.ridd.2021.104061 DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 27 Unwin, K. L., Powell, G., & Jones, C. R. (2021b). The use of multi-sensory environments with autistic children: Exploring the effect of having control of sensory changes. Autism: The International Journal of Research and Practice, 116. https://doi.org/https://doi.org/10.1177/13623613211050176 Van der Putten, A., Vlaskamp, C., & Schuivens, E. (2011). The use of a multisensory environment for assessment of Sensory abilities and preferences in children with profound intellectual and multiple disabilities: A pilot study. Journal of Applied Research in Intellectual Disabilities, 24(3), 280284. https://doi.org/10.1111/j.14683148.2010.00601.x Watkins, K. (2020). Sensory integration (SI) [PowerPoint slides]. https://ace.uindy.edu/portal DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 28 Table 1 Number of scores in SPSC descriptive categories Student Just Like the Majority of Others (Mean) More Than Others (+1 SD) Much More Than Others (+2 SD) Before AfterI AfterW S Before AfterI AfterW S Before AfterI AfterW S A - - - - 2 1 1 0 11 10 1 0 B - - - - 1 0 1 0 12 2 6 4 C 1 0 1 0 6 0 6 0 6 1 6 0 D 1 0 1 0 6 0 6 0 6 6 0 0 E 4 1 2 1 0 0 0 0 9 8 1 0 Note. The numbers reflect the 13 areas scored on the SPSC. None of the students received scores that fell within the Much Less Than Others and Less Than Others descriptive categories. Students A and B did not receive scores in the Just Like the Majority of Others descriptive category. Bolded scores indicate improved sensory area scores from pre-test to post-test. AI=after improved score, AW=after worse score, S=score stayed the same DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS 29 Table 2 Before and after project implementation scores on SAS-TR Student Generalized Anxiety Socialized Anxiety Total Before After Before After Before After A 3 7 1 7 4 14 B 0 0 0 0 0 0 C 4 9 2 4 6 13 D 5 0 4 3 9 3 E 0 0 6 5 6 5 Note. Higher score indicates more anxiety while a lower score indicates less anxiety. DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS Figure 1 Deep breathing activity cards 30 DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS Figure 2 "I need a break!" card and break frequency visual 31 DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS Figure 3 Second-grade sensory corner items 32 DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS Figure 4 Second grade sensory corner 33 DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS Figure 5 First grade sensory corner 34 DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS Figure 6 Effectiveness of Sensory Corners and Strategies 35 DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS Figure 7 Predominant Reason for Sensory Corner and Sensory Strategy Use 36 DEVELOPMENT AND IMPLEMENTATION OF SENSORY CORNERS Appendix A Participating students and eligibility criteria Student Eligibility Criteria Student A Developmental Delay Language Impairment Student B Developmental Delay Deaf or Hard of Hearing Learning Impairment Speech Impairment Student C Developmental Delay Learning Impairment Speech Impairment Student D Developmental Delay Learning Impairment Speech Impairment Student E Developmental Delay 37  ...

... 1 Program Development and Advocacy for Addressing Sex and Intimacy with Cancer Survivors Hailey E. Beneker April 27, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Katie Polo DHS, OTR, CLT-LANA 2 Abstract Objective: The purpose of this project was to educate cancer survivors, their partners, and healthcare professionals about the benefits of occupational therapy, specifically regarding sex and intimacy. A secondary objective was to advocate for the use of occupational therapy in community cancer care. Methods: Diagnosis-specific education sessions about occupational therapy and sex and intimacy were provided during existing support groups to survivors. Additionally, one education session was provided to partners of individuals living with cancer, and one to healthcare professionals. Formative and summative assessments in the form of pre- and post-surveys were used to measure knowledge of occupational therapy and success of the program. Results: The total sample size was 32 participants (N = 32). After the group sessions, 93% of participants (n = 13) stated they did understand occupational therapys role in cancer care. When partners and healthcare professionals if they understood the role of occupational therapy on the post-survey, 100% (n = 1) of partners and 100% (n = 2) of healthcare professionals stated that they did. When asked if the session met participants expectations for group sessions 71% (n = 10) said yes. When asking the partner group and the healthcare professional group the same question, 0% (n = 0) and 100% (n = 2) said yes, respectively. Conclusion: Patient, partner, and provider education on occupational therapy and sex and intimacy is needed in cancer care. Survivors, partners, and providers found this education program to be beneficial overall. 3 Program Development and Advocacy for Addressing Sex and Intimacy with Cancer Survivors Introduction This doctoral capstone experience (DCE) and project was completed at Cancer Support Community of Central Indiana (CSC), a non-profit organization in Indianapolis that provides free services to all individuals affected by cancer. During a needs assessment with Lora Hays, the executive vice president of CSC, it was clear that there was a need for a sex and intimacy program for individuals with cancer. Lora Hays expressed a vision for population-specific education on sex and intimacy due to the differences between diagnoses. Because occupational therapy (OT) places a large emphasis on client-centeredness, this author decided to do program planning for population-specific education sessions regarding sex and intimacy at CSC. The diagnoses that CSC serves includes 45 percent breast cancer survivors, eight percent colon cancer survivors, eight percent lung cancer survivors, eight percent prostate survivors, four percent ovarian cancer survivors, four percent pancreas cancer survivors, and four percent blood cancer survivors. I had the opportunity to participate in advocacy at CSC due to the topic for this DCE. An education session was tailored to healthcare providers and emphasized facilitating discussions about sex and intimacy more frequently. This author also advocated for CSC to provide educational information and resources on sex and intimacy to their population. This paper will contain background information on sex and intimacy as it relates to cancer survivorship, the theory and model that was the basis for this DCE, the project design and implementation, project outcomes, and implications for future practice. 4 Background According to the National Cancer Institute (2020), there were about 16.9 million cancer survivors in the United States at the beginning of 2019, with an estimated 22.2 million by 2030. The number of cancer survivors in the United States is increasing, and healthcare professionals should focus on reducing their functional deficits and improving their quality of life. Cancer has many side effects that can affect ones quality of life and ability to participate in occupations. Galbraith et al. (2012) stated that the most impactful side effect that cancer survivors reported was sexual dysfunction. Sex is an activity of daily living (ADL) that OT should address. Although sexual dysfunction is a largely reported issue among cancer survivors, it is often overlooked by healthcare professionals including therapists. The aims of this project were to educate cancer survivors on how cancer and treatment can affect sex and intimacy for different populations, educate cancer survivors on techniques to manage side effects to participate in sex and intimacy, and educate healthcare providers on the importance of OT in cancer care and the importance of addressing sex and intimacy with cancer survivors. In the past CSC has provided general information on sex and intimacy to a wide population. Stakeholders at CSC made it clear that there was a need for population-specific education because of the differences in experiences and side effects between gender and diagnosis. Not only did the stakeholders at CSC agree that there was a need for this type of program, but the literature supported the program. Many individuals with cancer have issues related to sexual dysfunction. McLeod and Hamilton (2013) stated that roughly half of cancer survivors in their study of case examples report sexual dysfunction. Similarly, in a study done by Galbraith et al. (2012), survivors of prostate cancer reported that sexual dysfunction impacted them more than any other side-effect 5 related to their cancer. These two studies show a need for addressing sex and intimacy with cancer survivors. During the development of this program, it was important to know what side effects cancer survivors reported interfering with their ability to participate in sex and intimacy. Cancer survivors have reported many sexual issues, including hot flashes, vaginal dryness, atrophic vaginitis, negative body image, fatigue, sleep difficulty, pain, loss of range of motion (ROM), short-term memory loss, difficulty with concentration and motivation, decreased libido, and more (Dizon et al., 2014; Kessing et al., 2016; Paterson et al., 2016). Additionally, it was important to understand that side effects, experiences, and concerns varied by population in terms of diagnosis. For example, Crowley et al. (2015) reported that prostate cancer survivors were concerned with physical changes to their body and their ability to give and receive pleasure, whereas breast cancer survivors were concerned with if they were attractive, if their bodies would still work sexually, concerned with pain during intercourse, and if they would be able to experience pleasure (Crowley et al., 2015). A survey was sent to participants of each education session prior to the session date to help understand specific problems and questions that each group had in order to remain client-centered. Along with physical challenges, cancer survivors can experience barriers related to mental health. Sporn et al. (2015) reported that patients in their study experienced high rates of depression (65%) and anxiety (59%), which research has shown affects sexual satisfaction. Likewise, Baxter et al. (2017) reported that anxiety and depression impact a survivors ability to engage in occupations such as sex. Therefore it is important to include information about mental health in population-specific education sessions. Occupational therapists address functional deficits to enable clients to engage in ADLs, instrumental activities of daily living, rest and sleep, work, education, play, leisure, and social 6 participation. Although occupational therapists can address functional deficits and improve quality of life, they are frequently underutilized in cancer care (Polo & Smith, 2017). Hwang et al. (2015) discovered that within their study, only four and a half percent of participants received OT during their first-year post-treatment, resulting in lowered quality of life. Occupational therapists can address functional deficits that cancer survivors experience and improve their quality of life, however, they are not given an opportunity to do so. Sex and intimacy are frequently unaddressed in healthcare settings despite many survivors reporting sexual dysfunction and the impact this ADL has on quality of life (Bober et al., 2019; McLeod & Hamilton, 2013; Vermeer et al., 2015). Because sex is an ADL, occupational therapists are uniquely qualified to address it with individuals who experience illness or disability that decreases their participation in it. In a survey by Sporn et al. (2015), 41 percent of patients reported that they wanted their oncologist to ask about sexual health and 58 percent reported wanting their primary care physician (PCP) to ask about sexual health. However, over 90 percent of participants in the survey reported that their oncologist hardly ever initiated a discussion about sexual health and concerns (Sporn et al., 2015). Quality of life for cancer survivors can be greatly impacted when OT services are underutilized and the topic sex and sexual dysfunction is avoided by healthcare professionals. One education session was targeted at healthcare providers to educate them on OTs role in cancer care and the importance of addressing sex with patients. The survey sent to participants prior to the session date also asked participants if they have ever received OT services and if a healthcare provider had ever discussed sex and sexual side effects of cancer and treatment with them. This information helps to understand if OT is truly being underutilized in cancer care and if healthcare providers are addressing sex with their patients. 7 Theory and Model The KAWA model guided this DCE project (Lim & Iwama, 2011). In this model, life flows like a river. There can be impediments in the flow of the river that is life, and it is an occupational therapists job to remove the impediments and restore function.Rocks are things that limit ones life flow (Cole & Tufano, 2008). For the population at CSC, rocks might included side effects from treatment, the stigma surrounding sex and intimacy, and poor quality of life. Driftwood refers to the attributes and resources of the client that can either be helpful or obstructive (Cole & Tufano, 2008). Examples of driftwood of individuals at CSC might include fear of asking about sex and intimacy, personal values, knowledge, personality, and confidence. By using my program to remove rocks and use driftwood to my advantage, I can work to address sex and intimacy with cancer survivors at CSC and improve their quality of life. The Theory of Andragogy also guided this DCE project (Knowles, 1978). This theory helped plan and implement my program because it focuses on adult learning, and my program focused on education for individuals with cancer, all of which were adults. The Theory of Andragogy states that adult learners retain information relevant to them (Knowles, 1978). For this reason, I offered the program to all participants at CSC and invited those who were interested to attend. By doing this, only those who found the information relevant to themselves, attended sessions, likely leading to better outcomes. I also asked what questions individuals had prior to their session so that I could tailor the information to their personal experiences. By tailoring the information provided in my sessions, I was able to ensure that the information provided was relevant and meaningful for the individuals attending the session. Project Description 8 Project Design This project was developed to help meet the needs of cancer survivors at CSC and partnering hospitals. There is a gap in care due to healthcare providers not referring their patients to OT and not addressing sex and intimacy with their patient, despite the impact this ADL has on quality of life. This program aimed to educate cancer survivors about how sex and intimacy can be affected by cancer and cancer treatment, ways to continue participating in sex and intimacy, and ways to advocate for themselves by requesting a referral to OT or another appropriate provider to address sex and intimacy. The literature indicated that many cancer survivors experience sexual dysfunction, and it is not addressed, thus affecting their quality of life (Bober et al., 2019; McLeod & Hamilton, 2013; Vermeer et al., 2015). In conjunction with the stakeholders at CSC, this author chose to offer diagnosis-specific education sessions during the time of already established support groups at CSC. One education session each was offered to the Womens Group, Breast Group, Mens Group, and Pink Youth Group during that groups pre-established meeting time. This ensured that diagnosis-specific information on sex and intimacy was being shared with the correct group. Meeting during the support group increased the likelihood of individuals attending the sessions because they likely already had this time set aside. Additionally, a group was created for partners of individuals with cancer and healthcare workers. The partner group was created because the literature indicates that partners of cancer survivors experience changes in participation in sex and should also be included in therapy (Ghizzani et al., 2018). The healthcare provider group was created to advocate for OTs role in cancer care, and the importance of discussing sex and intimacy with cancer survivors. Marketing strategies included distributing flyers to individuals at CSC via 9 email, support group leaders distributing flyers to their group, and counseling interns and other group leaders recommending the education sessions to any client they believed might benefit. To measure the success of the program, I used formative assessments in the form of selfcreated pre- and post-surveys to measure knowledge of OT. I also use summative assessments to measure the success of the program during the DCE. Pre- and post-surveys were created for group sessions, the partner session, and the healthcare professional session. No standardized assessments were used due to the limited availability of tools that align with this specific program. Implementation There were four group sessions: Womens Group, Breast Group, Mens Group, and Pink Youth. Womens Group was a group for women of any age with any type of cancer, Breast Group was for older breast cancer survivors, Mens Group was for men of all ages with any type of cancer, and Pink Youth was for young adult women, ages 18 to 40, with breast cancer. Participants diagnoses included breast cancer, prostate cancer, lymphoma, colorectal cancer, and ovarian cancer. Additionally, one group for partners of cancer survivors and one group for healthcare professionals were held. Group sessions were held virtually during each groups designated support group time. If an individual was not part of a support group, they were invited to attend the group that best fit their diagnosis. Each session lasted between 30-45 minutes and questions were accepted at the end. Pre-surveys were distributed to interested participants two days prior to the session in an introductory email. Post-surveys were distributed one day after the session to those who attended. Getting people to attend sessions was difficult due to the sensitive nature of the topic and stigma surrounding it. The sessions were marketed through support groups, counselors, and other group leaders. Creating and implementing this program during the 10 COVID-19 pandemic also presented itself as a challenge because many people do not like to meet on a virtual platform and/or do not understand how to use the virtual platform. Project Outcomes I used formative assessments in the form of pre- and post-surveys to measure knowledge of OT and success of the program during the DCE. Pre- and post-surveys were created for support group sessions, the partner session, and the healthcare professional session. It was necessary to create three different pre- and post- surveys because the target population was different for support groups, the partner group, and the healthcare provider group, therefore the information provided and gathered differed. The use of pre- and post-surveys enabled me to see a clear change in participants knowledge of OT and how cancer and treatment can affect sex and intimacy. Summative assessments were used for all groups to allow me to analyze feedback and make continuous quality improvements throughout the program. There were four participants present for Womens Group, eight for Breast Group, eight for Mens Group, and two for Pink Youth. There were also five participants present for the partner group and five for the healthcare professional group. The total sample size of participants that attended one of my sessions was 32 participants (N = 32). Pre- and post-surveys were sent to all participants but, despite email reminders, not all participants completed one or both surveys. The total sample size for the group sessions was 22 participants (n = 22), however only 14 of the 22 (63%) participants completed the post-survey. There were five participants present for the partner group (n = 5), all of which completed the pre-survey, however only one completed the post-survey. There were five participants present for the healthcare group (n = 5), all of which completed the pre-survey, however only two completed the post-survey. When analyzing the pre-survey for group sessions, it was clear to me that many participants did not understand OTs 11 role in cancer care and almost no one had ever been asked about sex and intimacy from a healthcare professional. In fact, only 32% of participants (n = 7) stated that they did understand OTs role in cancer care and 77% (n = 17) had never been asked about sex and intimacy by a healthcare professional. These numbers support Polo and Smiths (2017) statement that OT is underutilized in cancer care and the idea that healthcare professionals are not addressing sex and intimacy as they should (Bober et al., 2019; McLeod & Hamilton, 2013; Vermeer et al., 2015). After the group sessions, 93% of participants (n = 13) stated they did understand OTs role in cancer care, showing that my program was beneficial in improving knowledge of OT. When asked if partners and healthcare professionals understood the role of OT on the pre-survey, 40% (n = 2) and 60% (n = 3) of participants stated that they did, respectively. When asked the same question on the post-survey, 100% (n = 1) of partners and 100% (n = 2) of healthcare professionals stated that they did understand the role of OT. The post-survey used multiple choice and short answer questions to explore participants satisfaction with the session. When asked if the session met participants expectations for group sessions 71% (n = 10) said yes. When asking the partner group and the healthcare professional group the same question, 0% (n = 0) and 100% (n = 2) said yes, respectively. Participants from the group sessions reported that the most beneficial parts of their sessions included the speaker being open and frank, talking about emotional effects of cancer, discussing advocating for oneself, the conversational nature of the session, and normalizing the topic of sex. Participants from the partner group reported that they found the most beneficial part of the group to be getting to hear about what OT can do for this issue. Healthcare professionals reported that the most beneficial part of their group was learning the difference between PT and OT and receiving information on how OT can address sex and intimacy. 12 Suggestions for change from the group sessions included keeping in mind that not everyone has a partner, explaining how biochemistry is changed with hormone therapy and how that affects sex, more discussion of body image, more detailed information on the use of assistive devices, and including more information about specific medications and their side effects. Because I collected this information after each session throughout my program, I was able to make immediate changes to the sessions prior to the next session based on feedback. For example, after the Breast Group session, many participants reported that they felt I assumed they all had a partner, which was not the case. Consequently, for the Mens Group, I made sure to talk about sex and intimacy for a single man, as well as those who were dating or in relationships. Suggestions for change from the partner session included having a doctor co-speak to explain sexual dysfunction in more detail. Suggestions for change from the healthcare provider session included providing more information on how to refer a patient to OT and where a patient should be referred to. Because I only ran these sessions once, I can make note of these suggestions for any future sessions. When asked if they would recommend the sessions to a friend, 57% (n = 8) of group participants said yes, 100% (n = 1) of partner group participants said yes, and 100% (n = 2) of healthcare professional group participants said yes. All of the information collected throughout this program has enabled me to make needed changes and improvements, as well as provided me with the information to improve the program should it continue. Summary The number of individuals affected by cancer in the United States is growing every year, affecting the functional abilities and quality of life for those living with cancer (National Cancer Institute, 2020). Occupational therapists are trained to address functional deficits, therefore improving quality of life, however they are underutilized in cancer care (Polo & Smith, 2017). 13 Despite sex being an ADL and sexual dysfunction affecting many cancer survivors and their quality of life, healthcare providers tend to leave sex and intimacy unaddressed when working with cancer survivors (Bober et al., 2019; McLeod & Hamilton, 2013; Vermeer et al., 2015). This statement was supported by the results of my pre-survey in which 77% (n = 17) of participants stated that they had never been asked about sex and intimacy by a healthcare professional. CSC offers support services to cancer survivors free of charge and because if does not have a regular sex and intimacy program or group, this made it a great place for this program. Providing diagnosis-specific education to already established support groups at CSC made it easier to get relevant information about sex and intimacy to those who wanted it. Because CSC had support groups for women with cancer, men with cancer, breast cancer, and young adults with breast cancer, I targeted these groups and provided them with education about what OT does, how sex and intimacy can be impaired, how OT can address sex and intimacy, and how to advocate for oneself. There is a need to include partners in therapy; therefore, I also offered a partner group to educate individuals about how their relationships might change when their partner has cancer (Kessing et al., 2016). Providing a healthcare professional session served to not only educate healthcare professionals on the role of OT in cancer care, but also advocate for referring to OT and addressing sex and intimacy with patients. Overall, this program was a success with improvements in knowledge across all groups and high satisfaction across all groups. Future suggestions to improve the program included, adding more content about dating and communicating with potential partners, more detailed discussion on body image changes and how to manage them, and more detailed information on the use of assistive devices. To improve this program in the future, the person implementing the 14 program should add more information, such as exercises to improve body image, create a list of adaptive devices and prices, create a list of suppliers for adaptive devices, and do more research on dating with cancer. Additionally, the future person implementing this program should personally reach out to support group leaders about inviting their participants, consider requesting a list of support group members to contact personally, make presentations more interactive, and add activities and exercises to presentations. This program can be sustained even after my leaving CSC by encouraging CSC to continue taking DCE students and suggesting a sex and intimacy program for their project. By leaving all of the materials I have developed, research, outcomes, and my scholarly report in a binder with CSC before I leave, others at CSC could replicate or improve my program. Conclusions Throughout this project, I have improved my skills in program development and advocacy. Through experience, I learned about developing and utilizing surveys to measure change and gather feedback. Cancer survivors at CSC reported many sexual side effects of treatment and were happy that they were being given an opportunity to learn about those effects and how to manage them. Healthcare professionals that attended my session were overall happy with the information and learned more detailed information about what OT can do in cancer care. CSC benefited from my program because I was able to provide an education service to their population that they did not already have. There was a gap in CSCs services that I was able to help fill. Because of the information I provided during my education sessions, cancer survivors at CSC are more knowledgeable about how OT can help them, more understanding of the sexual side effects they might experience and how OT can address them, and how to advocate for themselves. The program and its results were presented to the Vice President and 15 Program Director of CSC at the conclusion of the program. Both individuals were happy with the program and program results and look forward to offering similar services in the future. The leadership at CSC understands the importance of addressing sex and intimacy with their participants and will continue to take opportunities to do so in the future. 16 References Baxter, M. F., Newman, R., Longpre, S., & Polo, K. M. (2017). Occupational therapys role in cancer survivorship as a chronic condition. The American Journal of Occupational Therapy, 71(3), 1-7. https://doi.org/10.5014/ajot.2017.713001 Bober, S. L., Michaud, A. L., & Recklitia, C. J. (2019). Finding sexual health aids after cancer: Are cancer centers supporting survivors needs? Journal of Cancer Survivorship, 13, 224-230. https://doi.org/10.1007/s11764-019-00744-2 Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, N.J.: SLACK Inc. Crowley, S. A., Foley, S. M., Wittmann, D., Jagielski, C. H., Dunn, R. L., Clark, P. M., Griggs, J. J., Peterson, C., Leonard, M., An, L. C., Wei, J. T., Montie, J. E., & Janz, N. K. (2016). Sexual health concerns among cancer survivors: Testing a novel information-need measure among breast and prostate cancer patients. Journal of Cancer Education, 31, 588-594. DOI 10.1007/s13187-015-0865-5 Dizon, D. S., Suzin, D., & McIlvenna, S. (2014). Sexual health as a survivorship issue for female cancer survivors. The Oncologist, 19, 202-210. doi: 10.1634/theoncologist.2013-0302 Galbraith, M. E., Hays, L., & Tanner, T. (2012). What men say about surviving prostate cancer: Complexities represented in a decade of comments. Clinical Journal of Oncology Nursing, 16(1), 65-72. doi: 10.1188/12.CJON.65-72 Ghizzani, A., Bruni, S., & Luisi, S. (2018). The sex life of women surviving breast cancer. Gynecological Endocrinology, 34(10), 821-825. DOI: 10.1080/09513590.2018.1467401 Hwang, E. J., Lokietz, N. C., Lozano, R. L., & Parke, M. A. (2015). Functional deficits and 17 quality of life among cancer survivors: Implications for occupational therapy in cancer survivorship care. American Journal of Occupational Therapy, 69(6), https://doi.org/10.5014/ajot.2015.015974 Kessing, S., Rosenwax, L., & McNamara, B. (2016). A dyadic approach to understanding the impact of breast cancer on relationships between partners during early survivorship. BMC Womens Health, 16(57), 1-14. DOI 10.1186/s12905-016-0337-z Knowles M. S. (1978). Andragogy: Adult learning theory in perspective. Adult and Student Learning, 5(3), 9-20. doi:10.1177/009155217800500302 Lim, K.H. & Iwama, M.K. (2011). The Kawa (river) model. In E. Duncan (Ed.), Foundations for practice in occupational therapy (pp. 117-135). Edinburgh, Scotland: Elsevier Churchill Livingstone. McLeod, D. & Hamilton, J. (2013). Sex talk and cancer: Who is asking? Canadian Oncology Nursing Journal, 23(3), 197-201. doi:10.5737/1181912x233197201 National Cancer Institute. (2020, September 25). Cancer statistics. https://www.cancer.gov/about-cancer/understanding/statistics Paterson, C. L., Lengacher, C. A., Donovan, K. A., Kip, K. E., & Tofthagen, C. S. (2016). Body image in young breast cancer survivors. Cancer Nursing, 39(1), E39-E58. DOI: 10.1097/NCC.0000000000000251 Polo, K. M. & Smith, C. (2017). Taking our seat at the table: Community cancer survivorship. American Journal of Occupational Therapy, 71(2). https://doi.org/10.5014/ajot.2015.015974 Sporn, N. J., Smith, K. B., Pirl, W. F., Lennes, I. T., Hyland, K. A., & Park, E. R. (2015). Sexual 18 health communication between cancer survivors and providers: How frequently does it occur and which providers are preferred? Psychology-Oncology, 24(9), 1167-1173. doi: 10.1002/pon.3736 Vermeer, W. M., Bakker, R. M., Kenter, G. G., de Kroon, C. D., Stiggelbout, A. M., & ter Kuile, M. M. (2015). Sexual issues among cervical cancer survivors: How can we help women seek help? Psycho-Oncology, 24(4), 458-464. DOI: 10.1002/pon.3663 19 Appendix A DCE Weekly Planning Guide This table is a weekly planning guide that I developed at the start of my project to help guide me from week to week. I followed this weekly planning guide and made some adjustments as needed. Week DCE Stage (orientation, screening/evaluation, implementation, discontinuation, dissemination) 1 Orientation Screening/Evaluation Weekly Goal 1) Complete orientation by the end of the week. 2)Complete needs assessment with site mentors by the end of the week. 3)Review literature to understand need for education/program. Objectives Tasks Date complete Meet with site mentors to discuss schedule and project. Complete orientation of the building. Confirm orientation dates. 1/10 Discuss virtual work days (3 days/week). Review literature Complete orientation of building Finalize and confirm MOU. Develop questions to ask mentors. Set up recurring meetings with faculty mentor. Begin working on project materials. 1/12 1/12 1/10 1/12 1/10 20 2 Screening/Evaluation 1)Continue to review literature. 2)Continue working on project materials (education presentations). 3)Start developing evaluation tools for project. Complete breast cancer and partner presentations. Review literature of program evaluation. Review literature related to sex and intimacy and breast cancer. Review literature discussing sex and intimacy for partners of individuals with cancer. Review evaluation literature. Choose type of evaluation. Develop outcome measures. 21 3 Screening/Evaluation 1)Develop mens group presentation by the end of the week. 2)Develop Pink Youth presentation by the end of the week. 3)Continue to develop outcome measures. 4 Implementation Screening/Evaluation 1)Complete womens group session on Thursday 2/3) 2)Email all women participating in group to administer survey and collect information. 3)Distribute evaluation measure to participants. Work on mens group presentation on Monday and Tuesday. Create PowerPoint s for groups. Work on Pink Youth presentation on Wednesday and Thursday. Wrap up outcome measure and get it approved by mentor. Finalize outcome measures on Friday. Get a list of women interested in participating in group. Contact all interested participants and gather necessary information. Follow up with participants after session. Determine outcome measure format (phone call, paper, online). Talk to site mentor about obtaining participant list. Implement education session. Follow up with participant s. Log all informatio n into necessary spreadsheet s. 22 5 Implementation Screening/Evaluation 1)Complete breast cancer group session on Saturday 2/12) 2)Email all women participating in group to administer survey and collect information. 3)Distribute evaluation measure to participants. 6 Screening/Evaluation 1)Begin analyzing data. 2)Continue to review literature for new information. 3)Develop education post for Facebook page. Get a list of women interested in participating in group. Contact all interested participants and gather necessary information. Follow up with participants after session. Obtain participant list. Implement education session. Follow up with participant s. Log all informatio n into necessary spreadsheet s. Ensure all data has been entered into necessary spreadsheets. Doublecheck spreadsheet s. Meet with faculty mentor to discuss data and a plan for analyzing/interpretin g it. Enter any missing data. Review new literature. Set up meeting with faculty mentor to discuss plan for data. Continue to read literature. Incorporat e facts and figures into infographic for Facebook. 23 7 Implementation Screening/Evaluation 1)Complete mens group session on Thursday 2/24) 2)Email all men participating in group to administer survey and collect information. 3)Distribute evaluation measure to participants. 8 Screening/Evaluation 1)Continue analyzing data. Add new data to spreadsheets. 2)Continue to review literature for new information. 3)Create education post for Facebook page. Get a list of men interested in participating in group. Contact all interested participants and gather necessary information. Follow up with participants after session. Obtain participant list. Implement education session. Follow up with participant s. Log all informatio n into necessary spreadsheet s. Ensure all data has been entered into necessary spreadsheets. Doublecheck spreadsheet s. Meet with faculty mentor to discuss data and a plan for analyzing/interpretin g it. Enter any missing data. Set up meeting with faculty mentor to discuss plan for data. Continue to read literature. Incorporat e facts and figures into infographic for Facebook. 24 9 Implementation Screening/Evaluation 1)Complete partner group session on Saturday 3/12) 2)Email all partners participating in group to administer survey and collect information. 3)Distribute evaluation measure to participants. 10 Screening/Evaluation 1)Continue analyzing data. Add new data to spreadsheets. 2)Continue to review literature for new information. 3)Create education post for Facebook page. Get a list of partners interested in participating in group. Contact all interested participants and gather necessary information. Follow up with participants after session. Obtain participant list. Implement education session. Follow up with participant s. Log all informatio n into necessary spreadsheet s. Ensure all data has been entered into necessary spreadsheets. Doublecheck spreadsheet s. Meet with faculty mentor to discuss data and a plan for analyzing/interpretin g it. Enter any missing data. Set up meeting with faculty mentor to discuss plan for data. Continue to read literature. Incorporat e facts and figures into infographic for Facebook. 25 11 Implementation Screening/Evaluation Discontinuation 1)Complete Pink Youth group session on Saturday 3/12) 2)Email all young women participating in group to administer survey and collect information. 3)Distribute evaluation measure to participants. 12 Dissemination Get a list of young women interested in participating in group. Contact all interested participants and gather necessary information. Follow up with participants after session. 1)Work on DCE VoiceThread. Complete first draft of DCE paper. 2)Work on DCE paper. Complete first draft of DCE VoiceThread. 3)Work on DCE poster. Complete first draft of DCE poster. Obtain participant list. Implement education session. Follow up with participant s. Log all informatio n into necessary spreadsheet s. Combine all drafted sections for paper. Record VoiceThrea d. Pull informatio n from paper to add to DCE poster. 26 13 Dissemination 1)Complete final draft of DCE paper, poster, and VoiceThread. Review changes to final materials. Make suggested changes. Meet with faculty mentor. Meet with site mentor. Confirm final disseminati on date. 14 Dissemination 1)Present DCE project to board at CSC on Tuesday 4/12. Confirm date with site mentor. Meet with site mentor. Confirm meeting place for dissemination. Decide on in-person or virtual format. Doctoral Capstone Experience and Project  ...