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... Title: How to Cope When Someone Says Alzheimers Allison Trimpe, OTS 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 research advisor: Alissia Garabrant, OTD, MS, OTR Leah Jones, Family Care Manager, Joys House HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS A Capstone Project Entitled Title: How to Cope When Someone Says Alzheimers Submitted to the School of Occupational Therapy at the University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By: Allison Trimpe How to Cope When Someone Says Alzheimers Approved by: Capstone Advisor (1st Reader) Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date 1 HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS How to Cope When Someone Says "Alzheimers Allison Trimpe University of Indianapolis 2 HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 3 Abstract The Alzheimers Association expects the number of cases of Alzheimers in the United States to increase from 5 million to approximately 14 million individuals by 2050. Researchers express the need for education on the disease and provide adequate care within the home while reminding caregivers to practice self-care. The purpose of this study was to develop evidencebased material to support caregivers during their loved ones cognitive decline. The researcher used a qualitative design with a semi-structured interview to gather information on the needs of caregivers. The study consisted of two participants: one formal caregiver from an adult day center and one informal caregiver who cares for her mother at home with cognitive decline. Four themes arose through discussion with the participants: lack of general education on cognitive decline, decreased safety within the home, understanding how to care, and caregiver burnout. The findings signified the importance of developing tangible educational materials for use with present caregivers and future caregivers. The presentations created can be used as discussion materials. Staff members at the adult day center can provide the resources to caregivers who are beginning the journey of their loved one's cognitive decline. Keywords: Alzheimers Disease, Caregiver Education, Cognitive Decline, Caregiver Support HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 4 Introduction According to the Alzheimers Association (2021a), there are currently over 50 million individuals living with Alzheimers disease (A.D.) or another form of dementia worldwide. Of the 50 million individuals, there are nearly five million Americans diagnosed; by 2050, researchers expect the number of individuals diagnosed to reach 14 million individuals within the United States who will be living with this disease (Alzheimers Association, 2020). Alzheimers disease is a degenerative brain disease that leads to memory deficits in individuals, which disrupt their daily lives and the lives of those around them (Robert, Gelinas, & Mazer, 2010). The rate of A.D. is rapidly increasing and is the sixth leading cause of death (LevyStorms, Cherry, Lee, & Wolf, 2017). Due to the rapidly growing number of individuals diagnosed with Alzheimers disease, family members and close friends have found themselves in unexpected caregiver roles. There are over 15 million Americans that are caring for individuals diagnosed with A.D., and these individuals are providing over 17.7 billion hours of unpaid care (Edwards, 2015; Wang, Liu, Robinson, Shawler, & Zhou, 2019). Caregivers are often uncertain and have questions regarding the diagnosis. They can feel overwhelmed due to their new role, leading to anxiety, stress, and caregiver burnout (Hwang, Rivas, Fremming, Rivas, & Crane, 2009). Many caregivers struggle to find resources and support during these uncertain times. Some national and state organizations aim to provide help to support their needs, but these resources can be hard to find and navigate when unsure of what they are needing. The Alzheimers Association provides help and support for individuals diagnosed with Alzheimers disease and their loved ones by providing advice and resources. The resources include care options, the stages and behaviors of individuals with the diagnosis, and how to care for an individual at each step of the diagnosis (Alzheimers Association, 2021). In addition to HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 5 national organizations, state and local organizations offer services for caregivers and their loved ones who have been diagnosed with this life-altering diagnosis. Joys House is a not-for-profit organization in Indiana established to provide care for adult individuals whose caregivers needed additional support during the day. The staff members at Joys House deliver care for individuals with physical and mental challenges through social and health services provided to the guests. In addition to providing daily services for their guests, Joys House strives to serve their caregivers by offering information and guidance when approaching situations at home (Joys House, 2021). Although Joys House has experienced staff members who can assist caregivers and provide education, they want to provide tangible resources that provide caregivers with education. According to Hwang et al. (2009), caregivers often experience occupational imbalance when they cannot balance their personal needs, cannot engage in their interests or fulfill their previous commitments, and cannot support their loved ones, leading to limitations in their health and well-being. Caregivers feel stress and anxiety when they do not have the knowledge and resources to help their loved ones changing cognitive status or behaviors and when they do not know how to plan for their loved ones futures (Edwards, 2015). Although caregivers often feel overwhelmed, they are unlikely to communicate these feelings because they do not want others to find them incapable or weak (Edwards, 2015). Researchers have found that caregivers with adequate information on problem-solving techniques, communication strategies, and coping interventions experience an increased quality of life and decreased caregiver burden (Edwards, 2015; Silverstein & Sherman, 2010). In addition, caregivers need guidance to implement environmental modifications and strategies to increase their loved ones independence with their daily performance (Edwards, 2015). Therefore, with the appropriate support and educational materials, caregivers can cope with the demands of being a caregiver. HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 6 Although Joys House provides immense support for their guests and families, a program with evidence-based literature that acknowledges the needs of the caregivers will enhance the quality of life for all their guests and families. The program needs to include further education on Alzheimers disease (A.D.) and the progression of the diagnosis; how to plan before the diagnosis progresses; what modifications can be implemented within the home and within the community to support a positive quality of life; and education on the importance of self-care, recognizing caregiver burnout, and engaging in occupations specific to caregivers. According to Ringer et al. (2020), caregivers need access to educational materials that supported the experiences of being a caregiver, understanding the progression of dementia, finding support within the community during trying times, and remaining physically and emotionally available while being exhausted. Therefore, the purpose of this study was to develop evidence-based material to support and educate caregivers during their loved ones cognitive decline. Review of Literature Alzheimers disease is a progressive disorder that requires a variety of care throughout the stages due to the individuals' cognitive, psychological, and behavioral challenges (Sousa, Sequeira, Ferre-Grau, Neves, & Lleixa-Fortuno, 2016). Self-harm is common during the progression of the disease because of limitations in self-awareness of current abilities, resulting in common accidents including medication errors, leaving the stove on, getting lost, and injuring themselves (Levy-Storms, Cherry, Lee, & Wolf, 2017). Caregivers need to understand the level of cognitive abilities their loved one is experiencing to ensure the proper safety within their home and environment. According to the Brain Change Model, there are five stages of cognitive decline which require different levels of guidance and assistance from caregivers (Positive Approach of Care, 2020). Individuals from the Positive Approach of Care (2020) related various HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 7 gems to the cognitive levels of individuals diagnosed with Alzheimers to help caregivers and healthcare workers better understand the unique abilities of individuals at each stage of cognitive decline. According to the Positive Approach of Care (2020), there are six levels of cognitive abilities associated with six distinct gems: sapphires, diamonds, emerald, amber, ruby, and pearls. An individual is often described as a Sapphire when their healthy brain enables them to care for those around them; these individuals are often the caregivers. The caregiver can think with flexibility and understand differences in perspectives while suppressing and filtering their responses. When a loved one starts to decline, they refer to them as a diamond. The individuals focus on a routine and their rituals due to their decreased ability to cope with changes; they are more rigid in their approaches to daily activities, and their likes and dislikes for certain situations become more evident. Stress and fatigue can lead to cognitive fog and result in individuals sticking to a rigid routine. At this stage, caregivers need to ensure mutual respect and allow new habits to be developed (Positive Approach of Care, 2020). The next level is emerald; an emerald has decreased awareness about their changing abilities resulting in repeating themselves and using vague wording. These individuals require cues when out in the community to safely ensure they get from one place to another and seek assistance to organize their daily lives. When an individual starts to focus on satisfying their desires and neglects boundaries and safety awareness, the individual has entered the amber phase of the diagnosis. During the amber phase, they do not acknowledge the whole situation and focus on pieces of their day-to-day activities; care is refused or seen as threatening, due to differences in perspective and ability (Positive Approach of Care, 2020). As an individual continues to decline, they become a ruby meaning they often rely on mimicking actions of their caregivers and may become unaware of ordinary HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 8 household object requiring hand-over-hand assistance. Due to their loss of visual skills, balance, and coordination, they may need help to sequence through tasks and move safely within their environment. The last stage is a pearl due to the disease's unfortunate progression on the individual's physical and mental abilities, including difficulty breathing and swallowing, weight loss, and immobility. They require the appropriate care and support for caregivers to see the hidden gem (Positive Approach of Care, 2020). These five levels may be present at different stages of life depending on the age of diagnosis. This approach allows caregivers to have a positive understanding of their loved one's cognitive decline and benefits caregivers at Joys House. According to Tanaka et al. (2015), an individual diagnosed with early-onset Alzheimers disease (EOAD) was someone diagnosed before the age of 65, and someone diagnosed after the age of 65 has late-onset Alzheimers disease (LOAD). Researchers found that individuals with EOAD presented with more language, attention, and visuospatial deficits due to the decreased grey matter within several regions of their brain (Dourado, Laks, & Mograbi, 2016; Tanaka et al., 2015). On the other hand, individuals diagnosed with LOAD had difficulty with memory and orientation (Dourado et al., 2016). They could experience more severe symptoms, including delusions, hallucinations, agitations, aggression, disinhibition, depression, anxiety, apathy, irritability, appetite challenges, and aberrant motor behaviors (Dourado et al., 2016; Edwards, 2015; Jones, 2006; Song et al., 2018; Wattmo & Wallin, 2017). According to Silverstein & Sherman (2010), individuals diagnosed with A.D. can manage their symptoms with a balanced diet and exercise, through the use of mental stimulation or pharmaceutical intervention, and by maintaining cardiovascular health. Caregivers need to understand the resources available and be comfortable discussing different options with their primary care physicians. Although there are HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 9 ways to manage symptoms, researchers found that fatigue or illness, physical discomfort, or changes to the external environment could worsen or contribute to behavioral and psychological symptoms for individuals with A.D. (Song, Park, Park, Cheon, & Lee, 2016). Furthermore, the caregivers need to understand what exacerbates symptoms of cognitive decline to ensure the best functioning for their loved ones. With the appropriate education, caregivers will be able to appropriately support their loved ones and increase their quality of life. Progression of Alzheimers Disease and How to Plan According to Tanaka et al. (2015), behavioral and psychological deficits are more common in the later stages of the disease because of the rapid cognitive decline; these behavioral and psychological symptoms lead to difficulties with activities of daily living (ADL), a decreased quality of life, and often institutionalization. Individuals in EOAD experienced deficits with ADLs and IADLs, such as preparing meals or using their phones (Hauber et al., 2014). According to Dourado et al. (2016), individuals with EOAD experienced a decreased quality of life when their diagnosis was interfering with work and finances; they also experienced reduced self-esteem and a loss of identity due to loss of social roles and disruption in their plans. As the disease progresses, individuals experienced lower functional abilities with decreased ability to bathe, dress, or toilet themselves without the help of a caregiver (Hauber et al., 2014). Occupational therapists found that recollection-based therapy with the implementation of physical, horticultural, musical, artistic, and ADL activities increased individuals quality of life. Increased quality of life is due to improvement with nonverbal expression and communication and understanding their emotions which alleviates problem behaviors (Kim, 2020). With improving their ability to engage in the daily activities familiar to them, the individuals felt selfefficacy and control over their existence leading to improvements in overall mood and well- HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 10 being (Kim, 2020). In addition, researchers found that it was important for caregivers to understand the behaviors and psychological changes that occurred with A.D. to effectively address the negative situations that occur (Song et al., 2018). Caregivers often become frustrated and overwhelmed due to the decline in the abilities of their loved ones resulting in anger and tension between the two individuals (Song et al., 2018). Researchers suggested the application of cognitive functioning training, home environment modifications, and participation in support groups and advocacy activities during the progression of the disease to decrease burden and frustration on the caregiver (Silverstein & Sherman, 2010). There is an overwhelming amount of information for a caregiver to understand, but ensuring their loved ones safety within the home should be a top priority. By providing various resources and educational materials, caregivers can handle their loved ones cognitive decline. Several home modifications can be implemented in and around the home to increased independence and support a positive quality of life. According to Silverstein and Sherman (2010), the installation of grab bars and railing within bathrooms and hallways, clearing some of the clutter such as furniture from home, and installing locks on the exit door provided increased safety for the loved ones with A.D. Along with home modifications, researchers expressed the importance of preparing legal, medical, and financial resources before cognitive decline (Silverstein & Sherman, 2010). To support both the caregivers and their loved ones, researchers have found that the implementation of compensatory strategies with adequate supervision and problem-solving techniques increases overall autonomy and social participation for both individuals, leading to an overall better quality of life (Edwards, 2015). Overall, with appropriate resources, caregivers will be less likely to become overwhelmed with everything that needs to be HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 11 accomplished to support cognitive decline, resulting in overall better health for them and their loved ones. How to Support a Positive Quality of Life According to Song et al. (2018), it was important for caregivers to find a positive coping strategy when frustrated with their loved one because coping methods such as confronting the individuals behaviors or bursting out of anger lead to worsening symptoms and decreased functional abilities. Researchers found individuals diagnosed with A.D. were experiencing poor quality of life when they were unable to perform their ADLs because there is a strain on their relationships with their caregivers (Hauber et al., 2014). To support a positive quality of life, caregivers must provide a pleasant and supportive environment for their loved ones (Song et al., 2018). Therefore, caregivers need guidance to recognize when they are experiencing frustration or feeling overwhelmed while finding support and coping strategies to sustain positive surroundings and a positive approach to care. Along with coping mechanisms for the caregivers and adapting to the environment, researchers found incorporating memory programs for individuals with A.D. to be beneficial (Hawley & Cherry, 2008). Researchers found the use of spaced retrieval as a memory intervention increased awareness and memory for individuals diagnosed with A.D. (Hawley & Cherry, 2008). Spaced retrieval was a shaping procedure that utilized active recall over long periods; when used by the therapists or caregivers, the individuals had a positive experience because of the social factor (Hawley & Cherry, 2008). With spaced retrieval, individuals were able to remember the names of their caregivers, which promoted a more positive and empowering relationship and quality of life (Hawley & Cherry, 2008). In addition to spaced retrieval programs, researchers found that establishing a transparent form of communication HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 12 between caregivers and individuals with A.D. allowed for a better quality of life (Silverstein & Sherman, 2010). Researchers found communication is a critical factor in reducing caregiver burden during changes in cognitive abilities (Edwards, 2015). Caregivers could use clear and short statements, along with verbal and visual cues, during conversations to support effective communication (Edwards, 2015). Through communication, caregivers understood the individual's feelings they were caring for, resulting in increased happiness and overall comfort during many situations (Edwards, 2015). Communication is an effective tool to include in caregiver education materials to support a positive quality of life. Through communication, caregivers will understand what their loved one needs while experiencing less stress and frustration. Importance of Self-Care for Caregivers Researchers found that stress felt by caregivers was dependent on their health status and their educational and cultural background (Ringer et al., 2018). According to Acton (2002), caregivers continuously provide for the needs of their loved ones, and they neglect the needs of their own within all areas, including physical, psychological, emotional, and spiritual health. Researchers found that when caregivers do not focus on their well-being, they experienced depression and anxiety, health problems of their own, including exacerbations of existing health conditions and compromised immune systems (Jones, 2016; Wang, 2019). Researchers have found that due to the stress of caregiving, family members who are caring for a loved one with Alzheimers disease are at a higher risk of developing depression and anxiety; around 50% of A.D. caregivers struggle with depression, and 42% experience increased anxiety (Hwang et al., 2009). Individuals often experience occupational imbalance during their everyday lives once they become caregivers due to the strain between their physical, mental, and social abilities HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 13 (Edwards, 2015). It was important for caregivers to understand the importance of maintaining their health through eating nutritious meals, getting enough rest, and exercising regularly (Acton, 2002; Hwang et al., 2009). Researchers reported common physical effects for caregivers included weakness and fatigue, impaired immune function, increased blood pressure, poor selfcare, and higher use of medication due to the stress and strain they experienced (Hwang et al., 2009). Understanding the warning signs of caregiver burden is essential to support a healthier lifestyle. Caregivers often felt stress while caring for their loved ones, but when caregivers took time to maintain their health, they could tolerate stressful situations (Acton, 2002; Wang, 2019). According to Song et al. (2018), when a caregiver expressed negative emotions such as stress or depression, the symptoms of the individual diagnosed with Alzheimers tended to worsen. Due to the high demands of attention, researchers found that caregivers were not engaging in healthpromoting self-care actions, did not get enough sleep at night, and did not participate in a regular form of exercise because caregiving was a 24-hour job (Acton, 2002; Wang, 2019). On the other hand, when caregivers involved themselves in health-promoting action, they felt less stress, decreased blood pressure, less anger, and overall decreased caregiver burden (Acton, 2002). Therefore, connecting caregivers with support systems within the community allows them to join with others experiencing similar situations. Although several research articles addressed the negative aspects of caregiving, other researchers found that some caregivers discussed the positive attributes of caring for their loved ones, including their satisfaction with taking responsibility (Ringer et al., 2020). Also, some caregivers felt more self-worth and felt privileged to be accepting the responsibility of their loved ones (Jones, 2006). Caregivers acknowledged their chance to build a closer relationship HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 14 with their family members while providing a warm and pleasurable environment for the loved one during their cognitive decline (Jones, 2006). According to Jones (2006), caregivers felt comfort and pride, knowing their family member was receiving the best care and could find meaning in the remainder of their lives. Furthermore, caregivers need to understand why they care for their loved ones and how this care will positively impact the rest of their loved ones life. Overall, caregivers needed support from their community when caring for their loved ones (Ringer et al., 2020). Researchers developed a program to educate caregivers on the progression of Alzheimers Disease, including cognitive decline, behavioral changes, and psychological decline, resulting in caregivers feeling less stressed and experiencing less caregiver burden (Sousa et al., 2016; Wang, 2019). Due to the better understanding of the progression of the disease, caregivers were also able to focus on their self-care needs and understood the importance of maintaining their health, getting enough rest, and engaging in regular exercise (Acton, 2002; Wang, 2019). All in all, caregivers need to have access to abundant materials that include evidence-based research to support their role as new caregivers. Methods Study Design This qualitative study uses a combination of narrative and case study design through the implementation of semi-structured interviews. The University of Indianapolis Institutional Review Board approved the study with exemption status. Though the research is exempt from formal consent, the researcher provided caregivers with handouts regarding the program development, and email regarding their voluntary participation in the program, and an email regarding options for participation within the study. HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 15 Participants The researcher recruited the participants via email through an Adult Day Center in central Indiana that serves individuals with cognitive and physical deficits. Staff members at the facility reported approximately 90% of the guest are experiencing cognitive decline and have been diagnosed with dementia (Personal Communication, 2021). The researcher included the participants if they were: (a) primary caregiver, (b) professional caregivers at the facility, or (c) an individual caring for a loved one with dementia. Development The researcher conducted an interview-style survey at the two Adult Day Center locations regarding the needs of caregivers and guests to develop an educational program. Before the coronavirus pandemic, the researcher conducted an in-person interview discussing the site/facility, information about the diagnoses and guests, and the current programs provided at the facility to understand the needs of the site better. The results of this need assessment showed that caregivers and staff needed: generalized education on Alzheimers disease, information on the potential progression of the disease, education on how to ensure safety in and around the home environment, education to understand cognitive strategies to improve independence within daily activities, resources on how to communicate with an individual who is experiencing cognitive decline, materials on how to manage self-care for caregivers, and education the importance of understanding technology for accessing accounts and applications on the phone. Due to the coronavirus pandemic, the researcher conducted all research and implemented the project virtually. The researcher developed evidence-based VoiceThread presentations regarding the topics previously noted as needs for education. The researcher conducted a survey to take before the HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 16 implementation of the VoiceThread. The researcher used the survey to determine a baseline for understanding the specific topics and the importance of understanding this information to the caregivers. Due to the development of the VoiceThread presentations being for future caregivers, the staff members provided verbal feedback regarding each VoiceThread presentation to enhance the quality of the presentations. In addition, the researcher developed PDF documents for each presentation to encompass the main points of each topic with a link to the finished VoiceThread for additional information. Implementation The researcher developed a series of eight VoiceThread presentations that ranged from five minutes to ten minutes and eight PDF documents including: general education of dementia, levels of cognitive decline, home modifications, cognitive strategies, the importance of self-care for caregivers, access to online banking, education on online bill pay, and understanding fraud. The site approved the presentations via email as the researcher developed them. Data Analysis The researcher analyzed the literature and reflected on information gathered during the interview process with the professional caregivers and one primary caregiver. The researcher reflected and logged notes after weekly meetings with the facility within a word document and compared information each week. Outcome Measures The researcher conducted a non-standardized satisfaction survey before forming the VoiceThread presentations to guide the information presented within each educational exhibition. The researcher re-evaluated the survey after caregivers had completed all educational presentations. The researcher constructed the survey by modifying aspects of the Canadian HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 17 Occupational Performance Measure, including importance/understanding, performance, and satisfaction ratings. After completing the project, the caregivers completed a goal-attainment scale where a score of zero signified the researcher met all the goals. The researcher did what the site expected; a score of +1 or +2 represented the researcher achieving expectations above and beyond initial goals. A score of -1 or -2 signified the researcher did not complete the initial goals. Results Professional (Formal) Caregiver Experience The researcher identified two common themes throughout weekly interviews with Participant 1: lack of general education and decreased safety within the home. Participant 1 has worked at Joys House for several years as the family care coordinator. Her responsibilities include evaluating caregivers' and their loved ones needs for services and providing opportunities for the families through activities and educational information. She has had a chance to engage with an abundant number of caregivers throughout her years at Joys House and had the opportunity to work with various diagnoses that present vastly different. She has witnessed the impact of appropriate resources, such as educational material on diagnoses and general safety, on caregivers and their families during times of uncertainty and concerning events. Theme 1: Lack of general education. The first theme identified throughout the weekly interviews with Participant 1 was the lack of public education. Participant 1 discussed the lack of education of the loved ones diagnosis and the effect on a caregiver's ability to care. Caregivers are given an abundant amount of medical information regarding the prognosis and plan medically for cognitive decline. Still, they are often left searching for information on support HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 18 within the community on caring for the individual within their home. Participant 1 discussed the importance of the caregivers understanding of how the changes in cognition can affect their loved ones ability to function in day-to-day life. Not only are caregivers placed into the role of caregiver, but they may also have to start performing other daily responsibilities that their spouse, parent, or friend was previously responsible for, such as paying bills or understanding how to navigate online accounts. Theme 2: Decreased safety within the home. The second theme identified throughout the weekly interviews with Participant 1 was decreased security within the home. Caregivers are often overwhelmed with caring for their loved ones and are not prepared for transitioning the individual they are caring for into their home, resulting in injuries or fear of injuries. Participant 1 discussed the importance of understanding safety measures and cognitive strategies to support independence within the home. Caregivers understand the importance of implementing physical changes within the home but can be unaware of where to find the resources or the best option. Participant 1 stated caregivers may become more focused on physical changes within the home and neglect other occupational therapy type strategies for cognitive decline. She expressed the importance of having an occupational therapist on the healthcare team when planning for cognitive decline to help with memory strategies and support these strategies within the home. Participant 1 expressed the importance of providing resources to the caregivers on systems that they can implement within the house and the community. Family (Informal) Caregiver Experience The researcher identified two common themes through a two-hour phone interview with Participant 2: understanding how to care and caregiver burnout. Participant 2 has cared for her mother for approximately two years since her sister could no longer be the primary caregiver. HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 19 Her mother has experienced cognitive decline for several years, but the signs were not evident until her father passed. The caregiver works full-time, typically outside of the home, needing extra support during the day. Due to the pandemic, she has had the opportunity to be home and be with her mother recently. Participant 2 expressed the importance of understanding the whole situation of a caregiver and their loved ones before providing specific education because all caregivers have different circumstances. Theme 1: Understanding how to care. The first theme identified throughout the interview with Participant 2 is understanding how to manage. Participate 2 expressed the importance of understanding the diagnosis of the individual. She was adamant about asking the doctors to explain the diagnoses and having resources available to demonstrate the potential prognosis. She addressed the information that she wished she would have known at the beginning of her mothers decline and presented information she has learned while caring for her mother. She stated she was unaware of day services that could support individuals with cognitive decline without placing a loved one in a nursing facility. In addition, Participant 2 expressed the importance of giving your loved one a choice and allowing them to have a voice in all aspects of their care. She stated the individual might not remember the conversation, but the caregiver will say they had the conversation. By giving their loved ones a voice, caregivers allow the individual to feel a sense of independence during cognitive decline. Theme 2: Caregiver Burnout. The second theme identified throughout the phone interview with Participant 2 was the physical and mental tolls of being a caregiver. Participant 2 discussed the importance of understanding the warning signs of caregiver burden because many caregivers are unaware of how overwhelmed they feel until they cannot care any longer. She stated that her sister was unaware of the signs of caregiver burnout. One day, the sister realized HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 20 she could not take care of their mother anymore, resulting in her dropping their mother off at Participant 2s home for a vacation that became her new permanent home. She explained how if her sister would have known the signs of caregiver burnout, her mother may not have felt the way she did about the situation. Participant 2 claimed she understood the signs and symptoms and allowed herself to make her health a priority. She stated other caregivers must know it is okay to take time for themselves, and it is essential to remain active. She also suggested finding a personal trainer or gym that allows caregivers to bring their loved ones because it has provided a bonding opportunity for her and her mother. In addition to remaining active, Participant 2 expressed the importance of ensuring caregivers are aware of support within the community and finding help when needed. Pre/Post Satisfaction Survey Results After the interviews with Participant 1 and Participant 2, the pre/post satisfaction survey was completed and used to guide the development of the program in Chart 1. The participants rated each item's performance and current understanding, and the importance of each concept before presenting the materials. After reviewing the materials, the participants rated the last column regarding satisfaction with the topics discussed. The scores provided are an average of Participant 1 and Participant 2s responses. HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 21 Chart 1: Pre/Post Survey Performance/ Understandin g Importance Satisfaction Generalized Education on Alzheimer's Disease 6 9 10 Difference Between Two Types of Alzheimers Disease 3 8 10 Potential Progression of Alzheimers Disease 8 9 9 8 10 10 8 10 9 Understanding Rights Within a Healthcare System and During Medical Appointments 7 9 9 How to Ensure Your Loved One is Safe Within Their Home Environment 9 10 10 Implementation of Visual Cues to Support Independence With Daily Activities 6 7 10 Implementation of Calendars and Agendas for Increased Self-Awareness 5 7 10 4 7 10 8 9 10 7 9 10 How to Plan Home Environment for Cognitive Decline What Legal and Financial Resources Should be in Place Before Cognitive Decline Implementation of Visual Cues for Sequencing Through Tasks Understanding the Importance of Self-Care as a Caregiver Understanding the Support Systems Within the Community for Caregivers After the completion of all educational material, the researcher conducted the goal attainment scale. Participant 1 and other staff members at the adult day center scored the researcher as a 2+ for all goals. The reader can see the goals in Chart 2. HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 22 Chart 2: Goal-Attainment Scale Results Goals 2+ Develop program materials via PowerPoint presentation (7-8 presentations in all) that can be duplicated and offered to caregivers. 1+ Develop program materials via PowerPoint presentation (5-6 presentations in all) that can be duplicated and offered to caregivers. 0 Developed program materials via PowerPoint presentations (4 presentations in all) that can be duplicated and offered to caregivers. 1Developed program materials via PowerPoint presentations (2-3 presentations in all) that can be duplicated and offered to caregivers. 2Developed program materials via PowerPoint presentations (0-1 presentations in all) that can be duplicated and offered to caregivers. Caregivers will report satisfaction in all education materials, including the diagnosis, course of diagnosis, and self-care strategies. Caregivers report overall satisfaction in 7-8 areas of educational materials. Caregivers report overall satisfaction in 5-6 areas of educational materials. Caregivers report overall satisfaction in 3-4 areas of educational materials. Caregivers report overall satisfaction in 1-2 areas of educational materials. Caregiver report overall satisfaction in 0 areas of educational materials. The staff members at Joys House will report satisfaction with program development for caregivers. The staff members of Joys House will report overall satisfaction in 7-8 areas of finalized educational materials. The staff members of Joys House will report overall satisfaction in 5-6 areas of finalized educational materials. The staff members at Joys House will report overall satisfaction in 3-4 areas of finalized educational materials. The staff members at Joys House will report overall satisfaction in 1-2 areas of finalized educational materials. The staff members of Joys House will report overall satisfaction in 0 areas of finalized educational materials. Develop a sustainable program about Alzheimers disease that will inform caregivers about their loved ones diagnosis. Discussion Caregivers and individuals within the community are typically unaware of how common Alzheimers disease is and often feel alone during their caregiver roles. The number of people diagnosed is rising, and that means the number of caregivers will be increasing. The purpose of HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 23 this study was to develop and implement evidence-based material through VoiceThread presentations to support caregivers during their loved ones cognitive decline. Generalized Education The researcher found a common theme between the research articles explored and caregivers experience regarding the need for generalized education on Alzheimers disease and the potential progress. Understanding the difference between Early Onset-Alzheimers disease and Late-Onset Alzheimers disease is essential for caregivers to plan for the future of their loved ones and understand the difference in the progression of the disease (Dourado, Laks, & Mograbi, 2016; Tanaka et al., 2015). The decreased awareness of different presentations of Alzheimers disease is evident at Joys House, resulting in endless questions and concerns from caregivers regarding their abilities to support their loved ones cognitive decline. The researcher developed a six-minute VoiceThread presentation and a PDF document explaining general education on the disease, including the potential progression of Early-Onset and Late-Onset Alzheimers disease. The staff members at the adult day center discussed the importance of understanding the presented information. They reported satisfaction with the materials, and the staff members will use the materials for educating future caregivers. The researcher discussed the importance of having the resource available for caregivers to refer to the information as their loved ones cognitive decline progresses. Decreased Safety Within the Home Safety within the home and environment for individuals with cognitive decline is one of the caregiver's number one concerns due to the typical lack of awareness of surroundings, leading to accidents. According to Levy-Stones, Cheery, Lee, & Wolf (2017), individuals with cognitive decline are more likely to experience self-harm within their homes due to lack of safety HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 24 awareness leading to death. The researcher found that caregivers do not feel adequately educated on home safety during cognitive decline resulting in a lack of preparation of their home environments. Others reported having difficulty implementing the proper home modifications because several are on the market, and the costs can be overwhelming. Due to the need for safety within the home, the researcher developed a seven-minute presentation on cognitive strategies for caregivers to implement with their loved ones and a fourminute representation regarding home modifications and adaptations. Both of these presentations support safety within the home by providing environmental changes that support a positive quality of life during cognitive decline. The presentation with cognitive strategies discusses mental steps to take to increase safety, such as calendars and schedules to support routine because when an older adult does not have a solid routine, increased confusion can result in accidents within the home (Hawley &Cheery, 2008; Song et al., 2018). The presentation regarding home modifications and adaptations includes physical changes that caregivers can implement within the home and surrounding environment to increase safety. The researcher discussed various adaptations that would not be an added cost for caregivers and some that would be beneficial but cost-effective. Not only will the modifications support safety within the home, but they will also increase the quality of life for the individuals being cared for because it increases their independence within their environment (Silverstein & Sherman, 2010). Caregivers expressed the importance of ensuring their loved one remains independent despite their cognitive abilities; with the appropriate recommendation for home modification, all individuals will maintain some level of independence. Understanding How to Care HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 25 According to several researchers, with the increasing number of individuals being diagnosed with Alzheimers disease, there is an increased number of individuals becoming unpaid caregivers, and the caregivers experience situations they had not previously planned or prepared for (Edwards, 2015; Wang, Liu, Robinson, Shawler, & Zhou, 2019). The caregivers experience a shift in responsibilities and roles within the household that they may not expect. Some areas of concern include paying bills, accessing online bank accounts, and what type of care can be implemented within the home while caregivers are unavailable. The researcher found that caregivers often do not know where to turn when these questions arise and become overwhelmed with their new responsibilities. Through conversations with caregivers, the researcher developed presentations to address the caregivers everyday concerns. The researcher developed a series of four presentations, including a six-minute presentation regarding how to pay bills online, a seven-minute presentation regarding how to access and set up an online bank account, a ten-minute presentation addressing commonly asked questions of caregivers, and a six-minute presentation on how to protect older adults from fraudulent activity. These topics were covered to increase independence within the home and to increase safety while using technology. According to AARP (2016), adults 65 and older are more likely to be scammed by individuals using tech-support calls, prizes, and sweepstake approaches or posing as a relative or friend, resulting in approximately $36.5 billion a year stolen. Since the researcher presented information supporting the increased use of computers for online forms of paying bills and regulating bank accounts, the researcher felt it was essential to address how to protect from fraudulent activity. In addition to providing information regarding online bill pay and online banking, the researcher also constructed a PowerPoint presentation to address writing checks and reading paper bills due to some older adults having limited access to the internet. HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 26 Caregiver Burnout The stress of becoming a caregiver can become overwhelming and lead to frustration and even resentment for their loved ones when they cannot recognize the warning signs of caregiver burnout. Caregiver burnout often occurs due to the caregivers placing the needs of their loved ones before their own, leading to lack of sleep, increased stress, and psychological strain (Jones, 2016; Wang, 2019). When there is a lack of self-care, caregiving can result in depression and increased anxiety because there is no outlet for the caregiver's stress (Hwang et al., 2009). Through interviews with the caregivers, the researcher determined that caregivers often feel they must occupy their loved ones time and cannot take time for themselves. Without the ability to engage in self-care activities and participate in routine daily chores, caregivers experience additional mental and physical exhaustion because they constantly worry about getting everything done. The caregivers expressed the need for education on activities that their loved ones could do at home or within the community to keep their loved ones occupied, leading the researcher to develop handouts and activities to keep the caregivers loved ones occupied at home. The researcher developed activity bags and an activity binder that the site can pass out to each guest within the facility; the site assembled the bags according to the caregiver and guests interest. In addition, the researcher developed a seven-minute VoiceThread presentation regarding the importance of caregivers engaging in self-care activities such as exercise and getting enough rest. The researcher discussed the warning signs of caregiver burnout, including displaying irritability, feeling hopeless or helpless, and withdrawing from family and friends (Cleveland Clinic, 2021). Through conversation with caregivers, the researcher recognized that many of the caregivers were unaware of the signs of caregiver burnout; thus, they were not receiving the help they HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 27 needed to continue caring for their loved ones. The site can use the presentation for current and future caregivers to understand the warning signs of caregiver burden and how to find the resources they need during these times. Limitations The researcher conducted the project through virtual communication without hands-on experience or the ability for the researcher to observe the guests resulting in the researcher relying on phone interviews with the caregivers. The study also consisted of a small sample size and a specific diagnosis limiting the ability to generalize the information for all caregivers. In addition, the participants involved were experienced caregivers and had completed research of their own which may have biased the results. Conclusion The qualitative study reflected on two participants experiences of being a caregiver for individuals with dementia. The two accounts were different due to their roles as caregivers, but they discussed similar needs for education. Rather than providing only presentations for individuals caring for loved ones diagnosed with Alzheimers disease, the research generalized the information to support all caregivers with loved ones who are cognitively declining. The researcher provided education on the progression of Alzheimers disease, implementation of cognitive strategies, installation of home modifications, the importance of self-care for caregivers, how to complete online banking and online bill pay, and how to protect against fraud were addressed within the VoiceThread presentations. The site with implementing the educational materials for current caregivers at the site will be available to future caregivers on a new website the staff members are developing and available through the Center for Aging Adults. Future staff members and students will develop additional educational materials for the HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 28 continued development of the caregiver program. In addition, this information can be applied by an occupational therapist within a clinical setting to support caregiver education. During practice, occupational therapists need to ensure they acknowledge the needs of the caregivers and support caregivers with resources to use within the home during their loved ones cognitive decline. The researchers background with occupational therapy intervention and research experience enabled the development of synthesized evidence-based resources that are client-centered and holistic. In addition, the research advocated for occupational therapist involvement with program development for caregivers regarding home safety and the importance of resources for caregiver burnout. A future researcher can further develop educational resources for a wider audience and confirm this study's findings. HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 29 References Acton, G.J. (2002). Health-promoting self-care in family caregivers. Western Journal of Nursing Research, 24(1), 73-86. Alzheimers Association. (2021a). Alzheimers and dementia. Retrieved from https://www.alz.org/alzheimer_s_dementia Alzheimers Association. (2021). Programs and support. Retrieved from https://www.alz.org/help-support/i-have-alz/programs-support Alzheimers Association. (2020). Alzheimers and facts and figures report. Retrieved from https://www.alz.org/alzheimers-dementia/facts-figures Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Dourado, M.C.N., Laks, J., & Mograbi, D. (2016). Functional status predicts awareness in lateonset but not in early-onset Alzheimers disease. Journal of Geriatric Psychiatry and Neurology, 29(6), 313-319. doi:10.1177/0891988716640372 Edwards, M. (2015). Family caregivers for people with dementia and the role of occupational therapy. Physical and Occupational Therapy in Geriatrics, 33(3), 220-232. doi:10.3109/02703181.2015.1031926 Hauber, A.B., Mohamed, A.F., Johnson, F.R., Cook, M., Arrighi, H.M., Zhang, J., & Grundman, M. (2014). Understanding the relative importance of preserving functional abilities in Alzheimers disease in the United States and Germany. Quality of Life Resources, 23, 1813-1821. doi:10.1007/s11136-013-0620-5 HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 30 Hawley, K.S., & Cherry, K.E. (2008). Memory interventions and quality of life for older adults with dementia. Activities, Adaptation, & Aging, 32(2), 89-102. doi:10.1080/01924780802142958 Hwang, J.E., Rivas, J.G., Fremming, R., Rivas, M.M., & Crane, K.R. (2009). Relationship between perceived burden of caring for a family member with Alzheimers disease and decreased participation in meaningful activities. Occupational Therapy In Health Care, 23(4), 249-266. doi: 10.3109/07380570903214788 Jones, S.H. (2006). Self-care in caregiving. Contemporary Issues of Care, 95-115. doi:10.1300/J137v14n01_05 Kim, D. (2020). The effects of a recollection-based occupational therapy program of Alzheimers disease: A randomized controlled trial. Occupational Therapy International, 1-8. doi:10.1155/2020/6305727 Levy-Storms, L., Cherry, D.L., Lee, J.L., & Wolf, S.M. (2017). Reducing safety risk among underserved caregivers with an Alzheimers home safety program. Aging and Mental Health, 21(9), 902-909. doi:10.1080/13607863.2016.1181710 Positive Approach to Care. (2020). The GEMS: Brain Change Model. Retrieved from https://teepasnow.com/about/about-teepa-snow/the-gems-brain-change-model/ Ringer, T.J., Wong-Pack, M., Miller, P., Patterson, C., Marr, S., Misiazek, B., . . . & Papaioannou, A. (2020). Understanding the educational and support needs of informal caregivers of people with dementia attending an outpatient geriatric assessment clinic. Aging and Society, 40, 205-228. doi:10.1017/50144686X18000971 HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 31 Robert, A., Gelinas, I., & Mazer, B. (2010). Occupational therapists use of cognitive interventions for clients with Alzheimers disease. Occupational Therapy International, 17, 10-19. doi: 10.1002/oti.283 Silverstein, N.M., & Sherman, R. (2010). Taking control of Alzheimers disease: A training evaluation. Taking control of Alzheimers disease: A training evaluation. Gerontology & Geriatrics Education, 31, 274-288. doi:10.1080/02701960.2010.503136 Song, J.A., Park, M., Park, J., Cheon, H.J., & Lee, M. (2018). Patient and caregiver interplay in behavioral and psychological symptoms of dementia: Family caregivers experience. Clinical Nursing Research, 27(1), 12-34. doi:10.1177/1054773816678979 Sousa, L., Sequeira, C., Ferre-Grau, C., Neves, P., & Lleixa-Fortuno, M. (2016). Training programmes for family caregivers of people with dementia living at home: Integrative review. Journal of Clinical Nursing, 25, 2757-2767. doi:10.1111/jocn.13266 Tanaka, H., Hashimoto, M., Fukuhara, R., Ishikawa, T., Yatabe, Y., Kaneda, K., & Ikeda, M. (2015). Relationship between dementia severity and behavioral and psychological symptoms in early-onset Alzheimers disease. Psychogeriatrics, 15, 242-247. doi:10.1111/psyg.12108 Wang, X.R., Liu, S.X., Robinson, K.M., Shawler, C., & Zhou, L. (2019). The impact of dementia caregiving on self-care management of caregivers and facilitators: A qualitative study. Psychogeriatrics, 19, 23-31. doi:10.1111/psyg.12354 HOW TO COPE WHEN SOMEONE SAYS ALZHEIMERS 32 Wattmo, C., & Wallin, A.K. (2017). Early- versus late-onset Alzheimers disease in clinical practice: Cognitive and global outcomes over 3 years. Alzheimers Research & Therapy, 9(70), 1-13. doi:10.1186/s13195-017-0294-2  ...

... Running head: THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS FOR PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 1 The Effectiveness of Inpatient Rehabilitation Occupational Therapy Support Group for Persons with an Acquired Brain Injury and Their Perceived Quality of Life Rachael Struewing A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Beth Ann Walker, PhD, MS, OTR, QIDP THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 2 Abstract Background: Acquired brain injuries are often referred to as the silent epidemic due to a healed external appearance despite internal changes that may lead to depression, anxiety, and dependency. Inpatient peer support groups have been found to help prevent the deterioration of perceived quality of life through psychosocial support, skill transfer, and community integration. Few studies support inpatient rehabilitation support groups with persons with an acquired brain injury, therefore this paper evaluates patient perceived effectiveness of inpatient support groups. Methods: The participants were patients with an acquired brain injury in a rehabilitation hospital. Based on the results of a needs assessment, group modules were designed to target patient needs. Each module consisted of two one-hour group sessions on consecutive days and two or three participants were recruited to participate in each module. The module topics varied based on the needs of the respective participants. Each participant completed a pre and post module questionnaire regarding perceived levels of confidence performing tasks and perceived effectiveness of the module. Data were analyzed and organized into themes. Results: Nine participants were recruited by their primary treating occupational therapist to participate in this program evaluation. Based on the post module questionnaire, all participants agreed or strongly agreed their perceived levels of confidence increased across all categories as a result of the module. All participants agreed or strongly agreed the module was effective across all categories. Conclusion: Overall, participant feedback indicates inpatient support groups increase confidence with performing occupations, increase knowledge of recovery, and improve quality of life. Further in-depth investigation on changes in actual levels of confidence performing occupations and actual quality of life over a length of time are needed. THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 3 The Effectiveness of Inpatient Rehabilitation Occupational Therapy Support Group for Persons with an Acquired Brain Injury and Their Perceived Quality of Life In the United States, nearly 4.5 percent of the population is currently living with a physical or mental impairment that limits participation in daily activities due to an acquired brain injury (Kolakowky-Hayner et al., 2019; What is the definition of disability under the ADA?, 2021). An acquired brain injury is an injury to the brain that occurs after birth and is not hereditary or congenital (Kolakowky-Hayner et al., 2019). There are two main types of brain injuries that may occur, including traumatic (fall, assault, motor vehicle accident, sport and recreation injury, or blast injury) and non-traumatic (stroke, infectious disease, tumor, or any lack of oxygen from the brain) (Kolakowky-Hayner et al., 2019). Regardless of the type of injury, an acquired brain injury may cause repercussions in physiological, cognitive, physical, affective, spiritual, emotional, and behavioral domains (Aben et al., 2013; Jones et al., 2011; Kolakowky-Hayner et al., 2019). The sudden and unexpected neurological damage to the brain may lead to significant life changes and a decline in occupational performance (Jones et al., 2011; Wijekoon et al., 2020). Researchers have identified various roles and occupations that may be impacted by acquired brain injuries, including basic activities of daily living (BADLs), instrumental activities of daily living (IADLs), rest and sleep, leisure activities, and social participation (De Luca et al., 2018). Due to the rates of acquired brain injury and the impairments that may follow, it is critical for the interdisciplinary team to provide the best care throughout the patients recovery (Fleming et al., 2012). Occupational therapy practitioners play a critical role in the interdisciplinary inpatient rehabilitation approach by helping patients adapt and overcome challenges through a patient centered and holistic approach to rehabilitation (Beaulieu et al., THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 4 2015; Fleming et al., 2012; Pendleton et al., 2017). Occupational therapists can use their skills and knowledge to design occupation and education-based peer support groups to meet the needs of patients in the inpatient rehabilitation setting (Muller et al., 2014; Wijekoon et al., 2020). Life Satisfaction Due to the lasting impact and lifelong complications that may follow the injury, acquired brain injuries are considered a chronic process, rather than a single event (Kolakowky-Hayner et al., 2019; McKee & Daneshvar et al., 2015). Researchers suggest acquired brain injuries can cause lifelong cognitive, physical, physiological, and behavioral changes (Barman et al., 2016; De Luca et al., 2014; Kolakowky-Hayner et al., 2019). Researchers also suggest that sustaining a brain injury can diminish ones health-related quality of life (HRQoL) (Polinder et al., 2015; Scholten et al., 2015). Satler et al. (2008) defines HRQoL as the aspects of an individual's life related to their overall health, such as physical functioning, social well-being, psychological well-being, perceived health, cognitive functioning, and ability to cope. Satler et al. (2008) also suggests that the HRQoL is an important concept in rehabilitation as it impacts the treatment and rehabilitation on the patients perceptions of their quality of life. A brain injury may cause cognitive impairments such as an increased sensitivity to internal and external distractions, changes in working memory, decreased processing speed, reduced ability to concentrate, poor judgment, and impairments with executive functioning (Kolakowky-Hayner et al., 2019). Cognitive impairments after a brain injury may impact the ability to participate in desired occupations and has shown to have a significant prediction of life satisfaction, leading to anxiety, depression, and social isolation (Grauwmeijer et al., 2014; Kouwenhoven et al., 2011; McKevitt et al., 2011). THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 5 In addition to cognitive impairments, persons with an acquired brain injury often experience physical impairments following the initial injury (Kolakowky-Hayner et al., 2019). A brain injury can cause both motor and sensory complications that may make it difficult to participate in desired occupations (Kolakowky-Hayner et al., 2019; Sunnerhagen et al., 2019). Physical impairments after a brain injury may include weakness in one limb, paralysis on one side of the body, spasticity, or rigidity in an extremity (Kolakowky-Hayner et al., 2019; Sunnerhagen et al., 2019). Fine motor and gross motor deficits are also common after a brain injury and may make it difficult to perform daily tasks such as bathing, dressing, writing, and cooking (Kolakowky-Hayner et al., 2019). Additionally, brain injuries may cause changes in proprioception and coordination (Kolakowky-Hayner et al., 2019). The change in body function following a brain injury may impact ones balance, gait, and ability to control movements needed for walking, transferring, working, eating, and other skills needed for independence in daily activities (Jaracz et al., 2014; Kolakowky-Hayner et al., 2019; Nadeau et al., 2016). Physical impairments limiting independence in basic daily tasks may cause decreased life satisfaction as it may lead to dependency and changes in daily roles (Bourland et al., 2011; Cutler et al., 2016). Persons with an acquired brain injury may also experience physiological changes, including an increase in headaches, extreme fatigue, nausea, numbness, sensitivity to light and noise, hearing impairments, blurred vision, and dizziness (Kolakowky-Hayner et al., 2019). Additionally, 58 percent of persons with a brain injury report experiencing chronic pain after their incident (Kolakowky-Hayner et al., 2019). Lindstedt et al. (2019) also found that 50 to 70 percent of patients with an acquired brain injury report visual disturbance and suggests there is an association between visual disturbance and daytime fatigue. Sullivan et al. (2015) found that people often report daytime fatigue and other sleep disturbances following a brain injury, THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 6 including frequent wakening, insomnia, and poor sleep quality. Sleep disturbances following an acquired brain injury are common and can be persistent and debilitating (Kolakowky-Hayner et al., 2019; Sullivan et al., 2015) and may exacerbate cognitive, emotional, physical, and social impairments that may impact performance in BADLs (Duclos et al., 2015; Johansson & Ronnback, 2014; Kolakowky-Hayner et al., 2019). Researchers suggest daytime fatigue and sleep disturbances may impact cognitive functioning and ultimately lead to decreased HRQoL after a brain injury (Cantor et al., 2008; Englander et al., 2010; Grauwmeijer et al., 2014). Behavioral changes, such as an increase in irritability, depression, anxiety, aggression, and impulsivity, have been found to be common after sustaining a brain injury (De Luca et al., 2014; Kolakowky-Hayner et al., 2019). Barman et al. (2016) suggests there may also be a decrease in behavioral stability and self-confidence following a brain injury. For some, clinically significant depression may occur during the first year and persist throughout recovery (Bombardier et al., 2016; Kolakowky-Hayner et al., 2019). Bombardier et al. (2010) also suggests depression following a brain injury may have a detrimental impact on HRQoL. Bourland et al. (2011) suggests that it is important to consider how these psychosocial factors may impact engagement in occupations, such as decreased satisfaction in life and social roles, decreased self-worth, and inadequate coping strategies. Juengst et al. (2015) reports lower life satisfaction after a brain injury can be related to the individuals behaviors before the injury, their stage of life, and their expected roles and responsibilities. Reports of decreased satisfaction and feelings of inadequacy may be due to reduced independence in personal care and BADLs, unforeseen dependency, altered social roles, decreased ideation of self-worth and self-image, and issues with coping strategies (Bourland et al., 2011; Cutler et al., 2016). Alcohol use, longer hospital stays, personal and family psychiatric THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 7 history, adverse life events, and psychosocial stressors are also considered risk factors for posttraumatic depression and other changes in mood and behaviors following an acquired brain injury (Albrecht et al., 2015; Alway et al., 2016; Bombardier et al., 2016; Kolakowky-Hayner et al., 2019). Home and Community Adjustment A persons change in function, along with increased anxiety and depression, may hinder their success with reintegration to the home and community (De Luca et al., 2018). Despite their ability to successfully perform BADLs, persons with a brain injury may have difficulties participating in instrumental activities of daily living (IADLs) including cooking, bill paying, driving, and other household or community activities (De Luca et al., 2018). Two unique studies were conducted to gather information regarding the lived experiences of patients and their caregivers following an acquired brain injury (Fleming et al., 2012; Winstanely et al., 2006). In both studies, patients and caregivers reported a decrease in confidence in their skills before discharging home due to a lack of knowledge of the injury and the recovery process and a lack of available resources to assist with the transition home (Fleming et al., 2012; Winstanely et al., 2006). Patients and caregivers identified a need for additional support in adjusting to home and the community in the earlier stages of recovery to improve overall success after discharge (Fleming et al., 2012). Theoretical Underpinning The Person Environment Occupation Performance (PEOP) model can be used to guide the foundation of the inpatient rehabilitation acquired brain injury support group as the core focus of the model is the interaction between the person, the environment, the occupation and THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 8 their performance (Christiansen et al., 2015). This model recognizes the strengths and weaknesses of the client, components of their environment, and how one's impairments may hinder their ability to perform desired occupations. This model considers how a brain injury may impair aspects of the person, such as the physical, physiological, and psychosocial domains, which then may alter their roles and occupations and therefore they may modify their environment. This model highlights the importance of teaching compensation strategies and improving deficits through remediation and rehabilitation to ensure satisfaction in the performance of occupations (Christiansen et al., 2015). Consistent with this model, inpatient peer support groups should consider each component of the person as they interact in their environment and while completing meaningful occupations (Jones et al., 2011; Lund et al., 2018). Each component of the PEOP should be considered when designing peer support groups to maximize the fit of the person, environment, occupation, and performance (Christiansen et al., 2015). Benefits of Support Groups As previously stated, returning home and into the community after hospitalization can be stressful and exacerbate existing issues for a person with a brain injury (Kolakowky-Hayner et al., 2019). In addition to the traditional forms of therapy, peer support groups should begin in the inpatient rehabilitation setting as the patient stabilizes and prepares for discharge (Cutler et al., 2016). Inpatient peer support groups can assist in bridging the gap of rehabilitation services and community functioning through psychosocial support, skill transfer and generalization, and community integration to reduce the stress and anxiety of returning home and into the community (Barman et al., 2016; Cutler et al., 2016). Inpatient support groups have been found to strengthen psychosocial adjustment through developing social relationships and social THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 9 acceptance by sharing information and validating experiences, building skills through routine and structure, and providing a sense of normalcy (Cutler et al., 2016; Lund et al., 2018). Additionally, inpatient support groups can provide educational resources to support patients as they prepare for discharge (Jones et al., 2011). Providing informative handouts with strategies for home safety, techniques, and community resources throughout the support group program will encourage communication between therapists, patients, and caregivers through these resources as they transition home and into the community (Fleming et al., 2012). Juengst et al. (2015) found support groups improve the quality of life and decrease depressive symptoms through leisure and other occupation-based interventions. Lund et al. (2018) found that engaging patients in meaningful occupations with their peers and contributing their own knowledge had a positive impact on everyday quality of life. Similarly, Jones et al. (2011) found that increased social networks through support groups can contribute to more positive outcomes among those with acquired brain injuries. Previous researchers have found support groups may benefit people who have experienced cognitive changes (Backhaus et al., 2010; Hibbard et al., 2002). Backhaus et al. (2010) conducted a study to examine the difference in perceived efficacy and quality of life of persons with a brain injury who participated in a 12-week coping skills group. The researchers found those who participated in the support group had improved their perceived efficacy and quality of life (Backhaus et al., 2010). Researchers suggest coping skills support groups may help to manage situations that may prevent emotional distress (Backhaus et al., 2010) and reduce aggression following a traumatic brain injury (Barman et al., 2016). In another study, Hibbard et al. (2002) found that persons with a brain injury that participated in a peer support program reported improvements in their knowledge of a brain injury, enhanced their quality of life, THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 10 improved their general outlook, and improved their ability to manage and cope with post-injury depression. Barman et al. (2016) states he believes the focus of peer support groups following a brain injury should include attention processing training, compensatory strategies, errorless learning, social behavior guidance, and problem-solving training. A similar study by De Luca et al. (2014) found that inpatient support groups that have a goal to address executive functioning skills through planning and problem solving may improve overall success with discharging home. Acquired brain injuries are often referred to as the silent epidemic due to the healed outward appearance despite the lasting cognitive, physical, physiological, and behavioral changes that may lead to depression, anxiety, fatigue, and dependency (Kolakowky-Hayner et al., 2019). Despite the lifelong changes following a head injury, inpatient peer support groups can prevent the deterioration of perceived quality of life (Jones et al., 2011). Occupational therapists have the knowledge and skills to create and administer inpatient support groups to guide patients through recovery. Inpatient peer support groups should be a part of the therapeutic process for individuals recovering from a brain injury as they cope with their new roles, develop basic social skills, and empower each other through the process (Cutler et al., 2016). Researchers believe peer support groups are critical to resume meaningful activities, prevent the loss of life roles, and improve satisfaction with performance in meaningful and purposeful occupations (Cutler et al., 2016; Jones at al., 2011; Juengst et al., 2015; Wijekoon et al., 2020). Although there is research to support inpatient rehabilitation support groups, there are few studies to support inpatient rehabilitation occupation-based support groups with persons with an acquired brain injury. Therefore, the aim of this program evaluation is to determine patient perceived effectiveness of inpatient rehabilitation occupation-based support groups that guide persons with THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 11 an acquired brain injury as they cope and understand their injury and create relationships with other patients. Methods Participants and Recruitment The inclusion criteria for this program evaluation were patients with an acquired brain injury, both traumatic and non-traumatic, including intracranial hematomas, stroke, and encephalopathy. The participants were all patients at a rehabilitative hospital located in central Indiana. All participants were in the process of recovery and were receiving a minimum of three hours of therapy each day at least five days of the week. Participants were required to demonstrate fair cognitive and communication abilities, as determined by their primary treating occupational therapist. Patients with severe aphasia or inability to communicate with or without communication technology were excluded from the program. Participants gave verbal consent to participate in the program evaluation. This program evaluation was approved by the University of Indianapolis Research Ethics Board. Overview of Needs Assessment Semi-structured interviews were conducted to complete a needs assessment and to gather information of the patients experiences throughout the rehabilitation process. A needs assessment questionnaire was designed using The Stroke Self-Efficacy Questionnaire, the Stroke Impact Scale, the Stress and Coping Self-Test, the Patient Competency Rating form, and the Patient Health Questionnaire-9. Appendix 1 contains the needs assessment questionnaire that was administered to each participant. Eight patients were recruited by their primary treating occupational therapist to participate in the needs assessment interview. Participants were asked a THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 12 series of questions using a 5-point Likert scale (1-strongly disagree, 2-disagree, 3-undecided, 4agree, 5-strongly agree) to rate their current level of function, prior level of function, perceived changes with mood, behavior, pain, and fatigue, and perceived levels of confidence with basic home-level tasks. Participants also answered free response questions regarding concerns for returning home and meaningful group session topics. Figure 1 represents the results of the needs assessment. One finding from the needs assessment indicated decreased levels of confidence with performing occupations, such as bathing, dressing, and cooking. The participants indicated a need for additional practice with functional mobility and functional transfers, using assistive devices and adaptive equipment. The participants also reported a need for strategies with performing basic-home level tasks, and IADLs including leisure activities. Similar to recent studies, participants indicated a need for increased social interaction and support with peers (Lund et al., 2018). Another finding from the needs assessment indicated that patients lack knowledge of available community resources, which is consistent with recent literature indicating patients and caregivers lack information for adjusting to home and the community, and therefore may benefit from educational handouts and community resources to assist with adjusting to home and leading to better outcomes in the community (Fleming et al., 2012; Winstanely et al., 2006). Program Development and Implementation Upon further review of the literature and results of the needs assessment, group modules were designed to meet the needs of persons with an acquired brain injury. Due to the average length of stay in the inpatient rehabilitation hospital, it was decided that each module would consist of two one-hour group sessions on consecutive days. Each week, the author selected a THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 13 group module and two to three participants were recruited to participate in the module by their primary treating occupational therapist. The author tailored the activities and method of delivery to meet the individual needs and goals of each participant for the respective module. Each individual session lasted an average of 60 minutes and involved a structured lecture component, peer exchange, performance of occupational tasks, presentation of educational handouts for the respective topic, and self-reflection on perceived levels of confidence and effectiveness of the group module. Each participant received education through verbal and written materials regarding injury and recovery, community resources, maintaining general health, and functioning in the home independently. Four modules were designed and conducted; the module topics were fall prevention, neuroplasticity, memory strategies for IADLs, and hemiparetic upper extremity care (positioning, edema management, and pain management). Data Collection A pre module and post module questionnaire was designed to rate the perceived levels of knowledge and confidence with occupational performance for the respective module topic. The questionnaires were adapted and developed using the The Stroke Self-Efficacy Questionnaire, the Stroke Impact Scale, the Stress and Coping Self-Test, the Patient Competency Rating form, and the Patient Health Questionnaire-9 as the guiding framework. The wording of some questions varied slightly for each module to increase patient understanding on the relevance of the question to the respective module topic. The pre module questionnaire can be found in Appendix B. The pre module questionnaire contained six prompt questions using a 5-point Likert scale (1-strongly disagree, 2-disagree, 3-undecided, 4-agree, 5-strongly agree) to assess the perceived levels of confidence of knowledge and functional performance of occupations before the series of group sessions. The post module questionnaire can be found in Appendix C. The THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 14 post module questionnaire contained twelve prompt questions using a 5-point Likert scale (1strongly disagree, 2-disagree, 3-undecided, 4-agree, 5-strongly agree) to assess the change in perceived levels of confidence of knowledge and of functional performance of occupations as a result of the module. The participants also used the post module questionnaire to rate the perceived effectiveness of the module. Data Analysis The questionnaire responses were entered into an excel spreadsheet to manage and organize the data. Preliminary codes were identified based upon participant response. The researchers used an occupational lens to ensure the focus of each theme remained on the effectiveness of the support group module and the participants perceived confidence with occupational performance. Results Four modules were implemented into the program with two to three participants in each module, with a total of nine participants (six females and three males) in the program evaluation. The mean age of participants was 69 years (SD 11.6). Six participants were admitted to the hospital due to a cerebral vascular accident, two participants were admitted due to an intracranial hemorrhage, and one patient was admitted due to a non-traumatic brain injury (brain metastasis). There were two different participants in each of the following modules: fall prevention, neuroplasticity, and hemiparetic upper extremity care, and there were three participants for the memory strategy module. Figure 3 represents the responses to the pre module questionnaire across all four modules. Overall, the participants varied among levels of perceived confidence in their knowledge and THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 15 confidence with home-level tasks with their current levels of function prior to the start of the module. Most participants rated agree with each statement, with the exception of the question I know and understand the definitions of stroke and brain injury and the topic of this group, to which the participants levels of confidence were divided among all levels. Figure 4 represents the responses to the post module questionnaire across all four modules. Overall, the majority of participants rated their confidence level as agree or strongly agree with each statement. THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 16 THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 17 Change in Perceived Levels of Confidence When scoring the percentage of change in perceived levels of confidence across all four modules, there was a 50% increase in confidence with knowing how to navigate their home with their current limitations, a 60% increase in confidence with being able to complete home level tasks with their current limitations, a 60% increase in confidence with completing BADLs with their current limitations, a 125% increase of awareness and understanding of stroke and brain injury and related recovery topics, and no change in awareness and understanding of community resources and services available for the respective module topic. Perceived Effectiveness of Group Module When scoring the effectiveness of the module, 100% of the participants agreed or strongly agreed the information was clear and easy to understand, 100% of the participants agreed or strongly agreed the information was relevant to them and their personal goals, 100% of the participants agreed or strongly agreed the handouts were relevant and useful to them and/or their caregivers, 78% of the participants agreed or strongly agreed the activities performed in the module were beneficial and increased their confidence with performing meaningful occupations, 100% of the participants agreed or strongly agreed the module overall helped them make progress towards their goals, 100% of the participants agreed or strongly agreed the quality of the module met their expectations, and 100% of the participants agreed or strongly agreed participation and interaction were encouraged throughout the module. Discussion THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 18 Inpatient rehabilitation occupation-based support groups with persons with acquired brain injury may contribute to better patient outcomes and rehabilitation programs (Hammond et al., 2015; Patterson et al., 2017). Although there is a significant amount of research to support inpatient rehabilitation support groups, there are currently few studies to support inpatient rehabilitation occupation-based support groups with acquired brain injury patients. This paper provides an overview of the perceived effectiveness of inpatient rehabilitation occupation-based support group modules based upon participant perspective. The results of this program evaluation suggest that persons with an acquired brain injury benefit from inpatient rehabilitation occupation-based peer support groups. The results indicate the participants made progress towards their goals, increased their knowledge and understanding of their injury, and increased their confidence with performing various occupations as a result of this program. The findings from this program evaluation are similar to other studies, suggesting that participants with an acquired brain injury can benefit from inpatient rehabilitation occupation-based support groups through performing meaningful occupations, connecting with peers, and gaining a better understanding of acquired brain injury rehabilitation (Barman et al., 2016; Cutler et al., 2016; Lund et al., 2018; Wijekoon et al., 2020). The results from this program evaluation indicate that participants benefit from additional practice performing skills needed for independence in occupations, resulting in an increase in overall confidence with performing those tasks. The positive feedback regarding additional practice performing challenging occupations is consistent with the findings from other studies who found patients benefit from extra skills practice and reinforcement with occupational tasks in a group setting (Lund et al., 2018; Malec, 2014; Muller et al., 2014; Patterson et al., 2016; Patterson et al., 2017). Some participants in this program evaluation indicated that the skills THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 19 performed in the group sessions were skills their primary treating therapist had not addressed in their regular sessions, such as laundry, cooking, transferring in and out of a tub shower, and other techniques such as proper hemiparetic positioning and neuromuscular reeducation. The participants also identified the benefits of participating in a group with other participants. In fact, two participants indicated they wished there were more participants in the group to contribute to the discussion and social exchange. The participants identified enjoyment and satisfaction with interacting and socializing with peers who were experiencing similar deficits, which is consistent with other studies which found peer interaction during group therapy to be a valued therapeutic component and generated a sense of belonging (Lund et al., 2018; Patterson et al., 2017; Wijekoon et al., 2020). Some studies have found connecting and interacting with peers and sharing experiences in a group may positively impact other aspects of life (Lund et al., 2018; Sadler et al. 2017; Wijekoon et al., 2020). For example, Sadler et al. (2017) found that peer support groups increased energy, confidence, and hope for recovery. Similarly, Muller et al. (2014) found support groups promote coping strategies and role opportunities. Connecting with peers in a group also encourages re-engagement in, or developing new interest in, purposeful and meaningful occupations (Cutler et al., 2016; Kessler et al., 2014; Muller et al., 2014; Wijekoon et al., 2020) These findings support the need for social support groups to create a therapeutic ambiance and a supportive environment to facilitate a sense of normalcy and belonging and to increase overall quality of life (Cutler et al., 2016; Lund et al., 2018; Malec 2014; Patterson et al., 2016). Results of the post module questionnaire indicates most participants found the educational handouts regarding adaptive tools, adaptive techniques, home exercises, and community resources to be beneficial to them and their caregivers. However, not all participants THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 20 found the handouts to be helpful. Two participants responded they were undecided and one participant disagreed with the statement I am more aware of resources and services available for me in the community as a result of this group session. This finding could be due to the participants not gaining any new information, as indicated by one participant who responded My husband had a stroke, I learned this information before or could be due to limited relevance of the resource to the specific participant. Despite the varying responses from this program evaluation, other studies have found educational handouts support persons with a brain injury as they prepare for discharge through encouraging communication between the therapists and caregivers and assisting with the transition to home and the community (Fleming et al., 2012; Jones et al., 2011). It is important to recognize and consider the high scores in perceived levels of confidence in both the pre module and post module questionnaires. Additionally, it should be noted that although each category showed growth in the post module questionnaire, there was little change in overall scores. This finding could be due to the fact that persons with acquired brain injuries may demonstrate cognitive deficits and impaired insight (Kolakowky-Hayner et al., 2019; Pagan et al., 2015; Patterson et al., 2016). The focus on activity and group participation while considering the participants personal factors and environment can increase overall confidence with occupations and thus improving overall perceived quality of life (Juengst et al., 2015; Lund et al., 2018). Although group-based therapy poses challenges for individualized care for all participants, the results from this program evaluation and similar studies demonstrate client-centered and holistic care is possible when delivering evidenced-based interventions in inpatient rehabilitation group therapy (Muller et al., 2014; Patterson et al., 2017). THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 21 Implications for Practice Occupational therapists have the skills and knowledge to address the physical and psychosocial needs of patients with an acquired brain injury (Muller et al., 2014; Wijekoon et al., 2020). Occupational therapy principles provide a framework for therapists to skillfully conduct task analyses and customize peer strategies and group activities that meet individual needs and goals of each patient (Muller et al., 2014; Wijekoon, et al., 2020). Occupational therapists in the inpatient rehabilitation setting work towards increasing overall strength and independence for basic activities of daily living needed for discharge, but often are unable to address more complex BADLs or IADLs due to the duration of inpatient stay (Walker et al., 2000). Although it is important to successfully perform BADLs, persons with a brain injury may have difficulties completing necessary IADLs, including cooking, bill paying, medication management, and other household or community activities (De Luca et al., 2018). Furthermore, as this program evaluation and other studies have found, inpatient rehabilitation occupation-based peer support groups may increase patients perceived levels of confidence in knowing and understanding their deficits, performing various BADL and IADL tasks, and increase social support and interaction leading to increased quality of life and confidence with returning home (Cutler et al., 2016; Lund et al., 2018; Malec et al., 2014; Muller et al., 2014; Patterson et al., 2017). Occupational therapy practitioners should incorporate inpatient support groups focusing on improving patient specific impairments, progress towards goals, and social support to help bridge the gap between skills practiced in therapy and life at home (Barman et al., 2016; Cutler et al., 2016; Patterson et al., 2016). This program evaluation and other studies support the idea that patients benefit from extra time performing skills in the inpatient rehabilitation setting (shower transfers, kitchen ambulation, cooking tasks, laundry, neuromuscular reeducation) to THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 22 increase their confidence with discharge (Lund et al., 2018; Malec, 2014; Muller et al., 2014; Patterson et al., 2016; Patterson et al., 2017). Occupational therapists should also consider the benefits of educational handouts to improve skill transfer and information for community resources (Fleming et al., 2012). Additionally, these educational handouts can improve the communication between the therapists and caregivers as it provides the caregiver helpful resources and strategies to improve the transition to living in the home (Fleming et al., 2012). Not only do these handouts benefit participants in the group therapy programs, but they may also benefit patients who do not participate in group therapy. Educational handouts may be used to improve patient knowledge and understanding of their injury and improve their overall levels of confidence and quality of life. Limitations Despite the positive feedback and results from this program evaluation, there are several limitations to be considered. In terms of the participants, this program evaluation is limited by the overall small sample size and the limited number of participants that participated in each module. The small sample size limits the generalizability and transferability of results. Additionally, this program evaluation may exhibit selection bias as each participant was recruited for the module from their primary treating occupational therapist based on if their needs matched the respective module topic for that week. Though considered a limitation of this program evaluation, for clinical purposes, this can be considered a strength as the modules were tailored to meet each participants specific needs and goals (Muller et al., 2014). Another limitation in regards to the participants, is an element of locus of control. Though the participants verbally consented to this program evaluation, they were recruited and signed up for the program THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 23 evaluation from their primary treating occupational therapist and therefore the participants did not self-initiate their participation. Despite data being collected over a series of four weeks, each participant only participated in one module consisting of two one-hour group sessions occurring on consecutive days. This factor may limit the results as it does not reflect a change in perceived levels of confidence or quality of life over a period of time. Persons with an acquired brain injury may also experience decreased memory and self-awareness of deficits (Kolakowky-Hayner et al., 2019). Therefore client-reported measures may impede the true levels of confidence reported in the pre module and post module questionnaires due to deficits with memory, insight, or other cognitive deficits (Muller et al., 2014). The authors acknowledge that this program evaluation occurred at a single site and the data was collected using a short, client-reported, customized questionnaire. While this program evaluation has provided insight and initial consumer feedback on inpatient rehabilitation acquired brain injury group therapy, further in-depth investigation on how actual levels of confidence performing occupations and perceived quality of life have changed as a result of the program. Additionally, further exploration over a longer duration of attending inpatient groups is necessary to understand the change in perceived levels over time. THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 24 Appendix A THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 25 THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 26 THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 27 THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 28 THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 29 Appendix B THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 30 THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 31 Appendix C THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 32 THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 33 References Aben, L., Heijenbrok-Kal, M. 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Population Health Metrics, 13, 4 THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 39 Sadler, E., Sarre, S., Tinker, A., Bhalla, A., & McKevitt, C. (2017). Developing a novel peer support intervention to promote resilience after stroke. Health & Social Care in the Community 25(5), 15901600. doi:10.1111/hsc.12336 Satler, K. L., Moses, M. B., Foley, N. C., & Teasell, R. W. (2008). Health-related quality of life after stroke: What are we measuring? International Journal of Rehabilitation Research, 31, 111-117 Scholten, A. C., Haagsma, J. A., Andriessen, T. M. J. C., Vos, P. E., Steyerberg, E. W., van Beeck, E. F., & Polinder, S. (2015). Health-related quality of life after mild, moderate and severe traumatic brain injury: Patterns and predictors of suboptimal functioning during the first year after injury. Injury 46(4), 616-624 Sullivan, K. A., Edmed, S. L., Allan, A. C., Karlsson, L. J. E., & Smith, S. S. (2015). Characterizing self-reported sleep disturbance after mild traumatic brain injury. Journal of Neurotrauma 32(7), 474-486. Doi:10.1089/neu.2013.3284 Sunnerhagen, K. S., Opheim, A., & Murphy, M. (2019). Onset, time course and prediction of spasticity after stroke or traumatic brain injury. Annals of Physical and Rehabilitative Medicine 62, 431-434. Doi:10.1016/j.rehab.2018.04.004 Walker, M. F., Drummond, A. E. R., Gatt, J., & Sackley, C. M. (2000). Occupational therapy for stroke patients: A survey of current practice. British Journal of Occupational Therapy 63(8), 367-372. Doi:10.1177/030802260006300803 What is the definition of disability under the ADA? (2021). Retrieved from: https://adata.org/faq/what-definition-disability-under-ada THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 40 Wijekoon, S., Wilson, W., Gowan, N., Ferreira, L., Phadke, C., Udler, E., & Bontempo, T. (2020). Experiences of occupational performance in survivors of stroke attending peer support groups. Canadian Journal of Occupational Therapy 87(7), 173-181. Doi:10.1177/008417420905707 Winstanely, J., Simpson, G., Tate, R., Myles, B. (2006). Early indicator and contributors to psychological distress in relatives during rehabilitation following severe traumatic brain injury: Findings from the brain injury outcomes study. Journal of Head Trauma Rehabilitation 16(4), 453-466. Doi:10.1097/00001199-200611000-00001 THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 41 THE EFFECTIVENESS OF INPATIENT REHABILITATION OCCUPATIONAL THERAPY SUPPORT GROUPS WITH PERSONS WITH AN ACQUIRED BRAIN INJURY AND THEIR PERCEIVED QUALITY OF LIFE 42 A Research Project Entitled The Effectiveness of Inpatient Rehabilitation Occupational Therapy Support Group for Persons with an Acquired Brain Injury and Their Perceived Quality of Life 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 Rachael Struewing Approved by: Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date  ...

... Running head: IMPROVING PARENT EDUCATION IN A LEVEL III NICU 1 Improving Parent Education in a Level III NICU Cassidy Stinson A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Alison Nichols, OTD, OTR Running head: IMPROVING NICU PARENT EDUCATION A Capstone Project Entitled Improving Parent Education in a Level III 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 Cassidy Stinson Doctor of Occupational Therapy Student Approved by: Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date 2 Running head:IMPROVING NICU PARENT EDUCATION Abstract This project took place at the Riley Hospital for Children at Indiana University North Hospital (IU North) in the NICU and aimed to develop and implement a program allowing parent involvement in their infants care through receiving education individualized to their needs. At this 24-bed NICU, there is one occupational therapist (OT) and one physical therapist (PT) who incorporated changes into their practice. Eight parents, four pre-implementation and four postimplementation, completed surveys in order to determine the success of the program. The implemented program consisted of methods such as facilitating hands-on learning and discussion, providing access to written materials, blogs, videos, apps, and books in order to enable people with different learning styles and preferences the same opportunity to learn. In drawing conclusions from therapists interviews, it was determined that despite progress made the efficiency of the program could still use improvement. Both therapists reported they would like to have more contact with families who are not present and a better method of communicating with non-English speaking families. Data collected from parent surveys suggest the newly implemented program is beneficial in parent learning as the post-implementation group of parents demonstrated a significantly increased level of understanding of the education provided when compared to the pre-implementation group of parents. Neonatal therapists and other members of the neonates medical team should consider these results when providing care in the NICU. Keywords: NICU, parent education, infant, neonatal, therapist 3 Running head:IMPROVING NICU PARENT EDUCATION 4 Introduction Background New parents want to feel educated regarding the care of their infant. Parent education is especially important if that child requires specialized care, such as those admitted into the Neonatal Intensive Care Unit (NICU). Patient- and family-centered care is recognized to be a critical component of high-quality care, as the family is the childs primary support system (Committee on Hospital Care and Institute for Patient- and Family-Centered Care, 2012). Although the American Academy of Pediatrics advocates for family-centered care (Committee on Hospital Care and Institute for Patient- and Family-Centered Care, 2012), it is not always fully implemented in the NICU due to the infants medical condition and the availability of families to be consistently present. Additionally, it may be impeded by the notion that infants should be cared for primarily by trained professionals during their time in the NICU (Craig et al., 2015; Dusing et al., 2012). However, studies have shown parents would prefer being involved in the care, rather than leaving their infants care to professionals only (Dusing et al., 2008). Project Description Guiding the development of my project is a parent education program developed at an academic hospital in Virginia which provided a model for other NICUs to successfully implement this type of program. The program implemented in Virginia consisted of focus groups to obtain information regarding the current process of education and how well it worked (Dusing et al., 2012). Researchers also held a second focus group to determine the benefits of holding a single educational session (Dusing et al., 2012). It was determined that current practices, as well as the single educational session, was insufficient and required modification using three approaches (Dusing et al., 2012). The three areas of focus consisted of introducing the use of Running head:IMPROVING NICU PARENT EDUCATION 5 developmental practices earlier, using multiple formats of education, and ensuring nursing education was consistent with therapy education regarding developmental care (Dusing et al., 2012). Therapy was introduced to parents via letter discussing the purpose of therapy in the NICU and encouraged parents to contact the therapists (Dusing et al., 2012). Therapists provided parents with a bedside program to follow infants stress signs, causes of stress, and calming techniques (Dusing et al., 2012). The program included a monthly group meeting discussing topics as well as a brochure providing information in written form (Dusing et al., 2012). Therapists in this study were able to change their typical working hours in order to avoid decreasing productivity, which in turn improved their availability to parents and collaboration with nursing staff (Dusing et al., 2012). Researchers highlighted their efforts to provide evidence-based practice in the implementation of the program by providing evidence to support their educational methods along with presenting evidence to staff members impacted by change (Dusing et al., 2012). Because of this evidence-based approach, I chose to use this program to guide the development of my project (Dusing et al., 2012). My project took place at the Riley Hospital for Children at Indiana University North Hospital (IU North) in the NICU and aims to develop and implement a program allowing parent involvement in their infants care through receiving education individualized to their needs. At this twenty-four bed NICU, there is one occupational therapist (OT) and one physical therapist (PT) who incorporated changes into their practice. Theoretical Basis Edward Demings Plan-Do-Study-Act (PDSA) in conjunction with the Teach-ModelCoach-Review (TMCR) model for educational purposes guided my project (PDSA: Plan-DoStudy-Act (Rapid Cycle Improvement) - Minnesota Dept. of Health, n.d.; Wright & Kaiser, 2017). Running head:IMPROVING NICU PARENT EDUCATION 6 The Person-Environment-Occupation Model (PEO) was also utilized to ensure an occupationbased focus (Law et al., 1996). The PDSA model is used when creating a structured change to a system (Altimier & Phillips, 2016). The Plan phase of the PDSA model includes determining what changes need to be made, what the current process is, the problem, and causes of the problem (PDSA: Plan-Do-Study-Act (Rapid Cycle Improvement) - Minnesota Dept. of Health, n.d.). The second phase, Do, consists of implementing the plan and collecting data. Third, the Study phase examines the improvements made from the implementation, or do, phase. The fourth and last phase is the Act phase. This phase consists of either implementing the new program or going back to phase one with necessary changes (PDSA: Plan-Do-Study-Act (Rapid Cycle Improvement) - Minnesota Dept. of Health, n.d.). The TMCR model is a daily guide used to ensure parents are receiving comprehensible education. The first step of the TMCR model is Teach, which begins with the therapist providing information about what is being taught along with the rationale (Wright & Kaiser, 2017). To start each session, the therapist reviews the strategies discussed in step one. In this case it would consist of strategies to decrease stress and allow the infant to learn to self-regulate. The second step, Model, involves the therapist showing the parent what to do with the infant. In the third step, Coach, the parent completes the previously demonstrated skills while the therapist provides verbal cues for optimal performance. The fourth and final step, Review, is set for parents to discuss their performance with the therapist as well as receive feedback (Wright & Kaiser, 2017). This model may need modification due to the nature of education and the method of provision. One modification that may be necessary includes all discussion with no hands-on or direct feedback components because the education may need to occur via phone, video, or email. Running head:IMPROVING NICU PARENT EDUCATION 7 The PEO model is an occupation-based model that deals with the interaction of the person, environment, and occupations and how the interaction facilitates or hinders occupational performance (Law et al., 1996). The purpose of occupational therapy in any context is to promote successful participation in occupations, and there are several barriers to providing family-centered care in the NICU, which can hinder infant and parent occupational performance (Gibbs et al., 2010). It is important to view the infant being cared for as an occupational being who is developing in the context of the parents co-occupations (Price & Miner, 2009). This theory was chosen carefully in considering both the infants and the parents occupations in order to develop a program focused on supporting each member of the family. Family-Centered Care Incorporating family members into neonatal care is widely researched and should be an implemented NICU practice. The American Occupational Therapy Association (2018) discusses the role of the OT as collaborating with the parents and the multidisciplinary team to allow parental engagement and attachment with their infant. Gibbs et al. (2010) consider parenting as an occupation and emphasize the importance of involving parents in the care of their infant while in the NICU. Although OTs cannot change medical interventions provided, there are ways to support parents through adapting to these interventions (Gibbs et al., 2010). In order to enhance parental role development, authors suggest being concise and using terms that are easily understood by parents when explaining the purpose of the medical interventions, creating opportunities for parents to engage in safe but meaningful touch with their infant, as well as educating them on interpretation of the infants state regulation (Gibbs et al., 2010). Educating parents on elements of their infants care, such as activities and strategies to enhance infant motor development, is an obligation of therapists in the NICU (Dusing et al., 2008). However, Running head:IMPROVING NICU PARENT EDUCATION 8 many times this education is excluded or forgotten during discharge as parents become overwhelmed with information regarding medical appointments and immediate needs to return home (Dusing et al., 2008). Education Just as Dusing et al. (2008) found NICU parents overwhelmed with information during discharge, Sneath (2009) found NICU parents still had unaddressed questions and felt unprepared for discharge. Focusing on the psychosocial components of being a parent of an infant in the NICU, using a variety of teaching styles to educate parents, and providing opportunities for peer support may improve the preparedness of parents at discharge (Sneath, 2009). Similarly, Craig et al. (2015) recommends peer support as one of many ways to support family-centered care in the NICU. Healthcare professionals should view parents and family members as part of the healthcare team when implementing family-centered care (Craig et al., 2015). To participate in their infants care, these family members must be educated by medical professionals who keep open and clear lines of communication without use of medical jargon (Craig et al., 2015). Education should begin upon admission, or at the least when it is certain that the infant will survive, rather than close to or upon discharge in order to improve parent confidence and decrease anxiety (Griffin & Abraham, 2006). It is crucial that parents receive several opportunities to learn and understand their infants needs and behavioral cues in order to confidently go home and provide care independently (Griffin & Abraham, 2006). Parent education should include multiple methods that can be comprehended through any learning style (Dusing et al., 2008; Hunter et al., 2019; Sneath, 2009) and should be written at a sixth grade reading level (Brega et al., 2015; Safeer & Keenan, 2005). Educational methods preferred by parents include a combination of observation, discussion, and written materials (Dusing et al., Running head:IMPROVING NICU PARENT EDUCATION 9 2008). Parents should participate in determining their learning needs as well as receive an opportunity to practice skills under the supervision of a medical professional in order to improve their confidence (Griffin & Abraham, 2006). Impact on Infant Although the advanced technology in NICUs allows for increased survival rates of premature infants, it does not come without costs (Altimier & Phillips, 2016). Developing outside of the womb is unnatural and brings extra challenges to proper development other than the obvious barriers of survival (Altimier & Phillips, 2016). It is imperative that those caring for an infant in the NICU consider the stages of brain development along with differences the infant is experiencing in the NICU rather than in the womb (Altimier & Phillips, 2016). The bright, loud, and busy environment of the NICU is not an ideal place for stress free infant development; however, we must also consider painful procedures and time away from parents as stress inducing as well (Milgrom et al., 2010). Infants in the NICU frequently require support in facilitation of coping with stress (Bader, 2010); therefore, it is important to understand how NICU infants communicate. Dr. Heidelise Als synactive theory of development describes how to best understand a premature infants communication or cues (Als, 1986). A short list of examples of stress/avoidance cues include gagging, hiccupping, finger splay, or change in color which are seen when an infant is over stimulated (Bader, 2010). Caregivers can support infants by simulating the womb as much as possible which includes the use of containment, boundaries for support, keeping infants in an overall flexed position, and promoting quality sleep time (Altimier & Phillips, 2016). In understanding infant cues and supporting their needs, caregivers have the ability to facilitate the best possible development available outside of the womb (Altimier & Phillips, 2016). Running head:IMPROVING NICU PARENT EDUCATION 10 Many studies have indicated a relationship between stressors experienced in the NICU and brain formation. Researchers used magnetic resonance imaging (MRI) and neurobehavioral examinations to determine the effect stress had on development and function of the brain (Smith et al., 2011). Increased exposure to stressors in the NICU negatively impacted brain development and function, whereas allowing parents to discern stress signals and support their infant resulted in positive effects on brain development and function (Smith et al., 2011). Similarly, researchers determined that educating parents on managing their infants stress improved brain development by use of MRI (Milgrom et al., 2010). Overall, it is noted that involving parents in care and decreasing infant stress positively impacts brain development and function, which in turn improves physical, cognitive, and psychosocial developmental outcomes (Craig et al., 2015). Healthcare providers should initiate parent education and support as soon as a stay in the NICU becomes a possibility (Craig et al., 2015). Necessary education includes understanding infant stress and stability cues and how parents can support infant development (Craig et al., 2015). Difficulties for Unavailable Caregivers Although research has shown that parents want to be involved and the incorporation of family members improves infants overall outcomes, some parents are unable to be present in the NICU (Altimier & Phillips, 2016; Dusing et al., 2008; Wigert et al., 2010). Being involved as a caregiver may prove difficult for parents for many reasons including but not limited to: the need to return to work, believing they are unneeded, distance from the NICU to home, lack of a childfriendly environment for siblings, health condition of a parent, or living accommodations made available by the hospital (Dusing et al., 2012; Gibbs et al., 2010; Wigert et al., 2010). No matter the barrier, each one presents difficulties for NICU staff in providing pertinent education to parents regarding their infants care (Dusing et al., 2012). Additionally, in having a family- Running head:IMPROVING NICU PARENT EDUCATION 11 centered developmental care approach, NICU staff members are expected to educate, mentor, and provide psychosocial support to parents with little to no training on how to do so (Altimier & Phillips, 2016). Teams who do not have night rotations and are only available during typical work hours, such as occupational, physical, and speech therapists, may find this task even more difficult. In addition to therapists having limited availability, parents may also find it nearly impossible to be present within those working hours. Suggestions regarding how to incorporate families into care include a place to stay with amenities, educational materials in multiple forms, psychosocial support from the whole NICU team, family support, childcare, peer support, referrals to community resources, palliative and bereavement services in the event of death, and transitional preparation through education (Craig et al., 2015). While these suggestions provide solutions for several issues regarding familycentered care, they do not provide any solution for parents unable to be present. As the literature suggests, there are countless benefits to having family members directly involved in infant care; however, there is a gap in the literature describing parent incorporation if they are not present during regular business hours. Parents rely on education from health care professionals to provide proper care for their child upon discharge, with no parent being an exception. The development and implementation of this program will allow parents incapable of being present during regular business hours the same opportunity of being involved in their infants care as others. Methods Needs Assessment Prior to beginning the project, I reached out to the onsite OT via email to complete a needs assessment. From the needs assessment I learned: (a) that a typical NICU day took place in Running head:IMPROVING NICU PARENT EDUCATION 12 the morning hours only, (b) the purpose of occupational therapy in this NICU is supporting the baby through positioning and sensory intervention, (c) the differences between how parents are educated if they are present versus if they are not, and (d) the objectives the OT wanted me to achieve. To begin the project I observed therapists, pre-implementation, which revealed their method of educating parents consisted of leaving short notes on a white board, giving as much education as possible when parents were present, and providing very few educational handouts many of which were outdated and visually unappealing. Next, I conducted interviews with the therapists (Appendix A) to determine the satisfaction with their current education. The interviews consisted of one Likert scale question asking on a scale from 0-10 how satisfied therapists were with their education process in order to guide following open-ended questions. These interviews gave therapists the opportunity to discuss what was or was not going well and what areas they felt needed improvements. After implementation of my programming, these interviews were completed again, and I learned more about the therapists satisfaction/dissatisfaction of the program. I also surveyed two groups of parents, one prior to implementation and one following implementation, to determine the success of the program. The survey (Appendix B) included 4 basic demographic questions in order to take into account the differences of education level, age, gender, and ethnicity. The survey itself consisted of six questions asked on a Likert scale from 010 asking parents to rate their knowledge and preparedness to go home in relation to therapy. The survey also consisted of two qualitative, descriptive questions in order to determine how well parents understood the education provided. Finally, the survey ended with the option to have a therapist contact parents to answer any questions they had. Running head:IMPROVING NICU PARENT EDUCATION 13 With observation and a completed needs assessment, it was evident that change was a necessity as many parents did not receive proper education prior to discharge. Due to the size of the NICU, therapists also work in other areas of the hospital including outpatient pediatric rehab, acute rehab, and the pediatric intensive care unit (PICU) in order to increase productivity. Therapists saw NICU patients in the mornings, leaving no time in the afternoon for availability of therapists to parents. Literature and findings from completed surveys supports the need for multiple methods of education, introducing therapeutic principles early on, and nursing staff to be educated in supporting developmental care for continuity of education (Dusing et al., 2008, 2012; Griffin & Abraham, 2006; Hunter et al., 2019; Sneath, 2009). Upon completion of the needs assessment, in conjunction with an extensive literature review and observations, five objectives were determined: compile literature supporting education, develop a gestational guide, improve professional appearance of current handouts, create onboarding survey for parents, and develop an educational video for parents. Program and Materials The program materials consist of an onboarding survey for parents to describe their preferred method of communication and learning style, educational handouts, a log for parents and therapists to document observed stress signs, beginning the process of having educational videos produced, and a compilation of helpful online resources (Appendix C). In addition to created materials, the program included resources already available such as a packet educating on stress signs, a tummy time brochure, and a milestone checklist. The program consists of amending therapists routines by educating parents prior to ongoing therapy and incorporating flexed hours providing more opportunities for parents to be present after regular business hours. Upon completion of the materials and program, a small meeting to educate the entire therapy Running head:IMPROVING NICU PARENT EDUCATION 14 team of the changes made was held. There was also an educational meeting for the nursing staff to understand the changes as well as their role in the process. Early Education The amount of education and information parents receive in preparation for discharge from the NICU can be extremely overwhelming, especially on the day of discharge (Dusing et al., 2012; Griffin & Abraham, 2006). This should be a happy memory to look back on rather than a time of stress and anxiety, which becomes difficult to achieve when parents are overloaded with information (Griffin & Abraham, 2006). It is in the best interest of the baby and the parents to incorporate education throughout the stay rather than try to cram it in on the last couple of days, posing the risk of decreased retention (Griffin & Abraham, 2006; Newnham et al., 2009). Upon admission, parents received information, either by in-person consult or a clipboard of materials, on the role of physical and occupational therapy in the NICU as well as an onboarding survey asking their preferred method of communication, learning style, and when they would be available to speak with a therapist. In each room, parents had access to a developmental guide for expectations of the particular gestational age of their baby as well as how they could support the development of their baby at this time. Therapists also provided an infant stress sign and selfregulation log along with a packet with further education about these topics in order to allow parents the opportunity to understand how to communicate with and support their baby even before therapy began. Approaching parents early on in their NICU stay helped parents understand what the therapy team was there to do, why therapy is just now seeing the family, and provided pertinent information that they otherwise may have been unaware of prior to beginning therapy intervention. Provision of early support aids in building rapport and trust with parents, Running head:IMPROVING NICU PARENT EDUCATION 15 improving the therapists ability to educate from the beginning rather than half-way through their NICU stay once parents feel they are already aware of how to best care for their baby. Methods of Education Based on support from literature, multiple methods of education were provided (Dusing et al., 2008; Hunter et al., 2019; Sneath, 2009). Parents received an educational handout which aligned with the log to track the babys stress signs and self-regulation. Therapists also provided a handout guiding expectations for gestational age and how to best support the baby at their current gestational age. Every couple of weeks, therapists provided another handout with the next gestational age range and what to expect of their child. With the use of the onboarding parent survey and flexed hours, therapists were able to work with parents schedules in order to allow more times to discuss any pertinent education or questions parents had. The hospital also planned to add two educational videos to their television system that would be used for admission and discharge education. The first video consists of infant stress signs, self-regulation skills, and how parents can support their infant during these times. The purpose of the first video is to educate parents at the beginning of the NICU stay. The second video consists of education regarding milestones, tummy time, safe sleep, and continued support for their infant. The purpose of video two is to educate parents prior to their discharge home. All together the videos will serve as reinforcement for education provided directly from the therapists, as well as a means to reach parents who are unable to speak with therapists throughout their stay. Additionally, therapists provided parents with educational handouts prior to discharge including the same information discussed in the video. If parents displayed interest in educational websites, apps, or books via the onboarding survey, therapists provided a handout with these recommendations as well. Running head:IMPROVING NICU PARENT EDUCATION 16 Nursing Involvement Nursing staff must also be educated and incorporated into this process in order for it to be successful and consistent across disciplines (Dusing et al., 2012). Although nurses are the primary caregivers for infants in the NICU, only parents remain constant upon discharge, emphasizing the importance of provision of consistent education from each discipline (Griffin & Abraham, 2006). Nursing staff should include parent education in caregiving and echo developmental guidelines given by therapy staff; however, nurses require additional education and support themselves in order to provide this service adequately (Griffin & Abraham, 2006). Fortunately, while my project was taking place, the nursing staff was also undergoing changes in their discharge process making it easier to incorporate my program. I attended a meeting for nursing staff to provide insight on the handouts, the logs, and the videos to be made. The meeting acted as a means to educate nursing staff on expectations of their involvement as well as education on the importance of decreasing an infants stress with regards to brain development. Expectations of nursing staff involvement included using the logs, encouraging parents to watch the videos once they were available, and awareness of materials therapists have access to. With nursing informed of the materials and process implemented, they can help connect parents with information they may not think to ask a therapist for, and they can reinforce the practices of decreasing stress on the baby during care times. Results Changes implemented and assessed occurred in a 14-week time span. I interviewed two therapists, one PT and one OT, who work in the NICU to discuss their satisfaction with their process of educating parents pre- and post-implementation. Additionally, I surveyed eight Running head:IMPROVING NICU PARENT EDUCATION 17 parents, four pre-implementation and four post-implementation, in order to determine the success of the program. Therapist Interviews The two therapists interviewed provided very different opinions, likely due to the nature of each discipline. For both pre- and post- interviews each therapist rated their satisfaction with the educational process for unavailable parents they were currently using. During the preinterview the PT rated her satisfaction as a seven while the OT rated her satisfaction as a one. When asked to explain why she rated her satisfaction as a seven, the PT discussed that she tries to educate parents when they are present although some parents are more difficult to reach than others. She also discussed that the team had educational handouts to leave for parents, but some of the handouts were outdated, had limited access for languages other than English and Spanish, and some materials did not align with health literacy recommendations. Although she reported issues with the educational materials, she stated that the team has access to more materials than they did five years ago. Another area discussed was educating parents who had premature babies who were born at less than 32 weeks gestation, as these babies do not begin therapy for several weeks upon admission due to their age. The PT perceived the medical teams efforts in explaining the therapy process as efficient as they would occasionally inform parents that their baby would begin therapy soon. The medical team would also educate parents on stress signs due to their impact on body functions such as heart rate, but only if they showed stress during care. The medical team did not go into detail about the different types of stress signs or how to support the baby when stressed. Reporting a much different opinion on their educational practices, the OT discussed her concerns. Overall, the OTs main concerns all stemmed from poor communication with families. Running head:IMPROVING NICU PARENT EDUCATION 18 She reported she did not have a way to regularly communicate with parents who were not present and no method of knowing parents availability, in or out of the unit. She also discussed there being no way to know if parents read her notes/handouts, if they had questions, or if they understood the information she left. She felt unable to convey the level of importance of what she was doing for treatment and why she was doing it. The OT had concerns about the lack of a way to provide feedback on parents methods of soothing their baby or discussing parents observations. Similarly, with younger babies the OT perceived the process of educating and communicating with these families as problematic. She believed that she was missing vital milestones and withholding valuable information from parents that would have been beneficial during this time. Because of this she felt she was unable to build rapport as well as she could have if she began a relationship sooner. The information gathered from the post-implementation interviews reflected similar results in that the PT and OT had differing opinions. The PT rated her new satisfaction at a seven while the OT rated her new satisfaction at a nine. When asked to describe why the PT rated her satisfaction at seven, she reported that the process still seems about the same as preimplementation. She stated that parents are still not present for therapy, and she is unable to determine if parents have read the education left on the clipboard. She did admit the changes were difficult for her to truly assess as it was a relatively short-term project, and the census was low throughout the duration of my time there. The PT discussed how she has seen a more significant improvement for the OT as the clipboard system focused on occupational therapy education. The OTs view of the programs success was significantly different from the PT. The OT reported, although there are still areas that need to improve, she believes this program has Running head:IMPROVING NICU PARENT EDUCATION 19 allowed her a better method of accessing parents through obtaining their contact information and availability. She also discussed high levels of satisfaction with having desirable educational materials that provide explanations closer to what she would say in person. She noted benefits of being more available on the unit as nurses have increased awareness of who she is, what her role is, and when to contact her with questions. The OT also reported great satisfaction with having the medical teams support in building relationships with families early on in their stay, even if they do not receive therapy for several weeks. Although each therapist reported significantly different levels of satisfaction, they were in agreement that despite progress made, the efficiency of the program could still use improvement. Both therapists reported they would like to have more contact with families who are not present and a better method of communicating with nonEnglish speaking families. Parent Survey Two groups of parents took the pre-/post-implementation survey. The first group, preimplementation, reported inconsistent information between the two sections of the survey. This group of parents failed to fill out the demographics section; therefore, it is not possible to compare differences between demographic factors. It was unclear why surveys were left incomplete. Based on the Likert scale questions (the average score is denoted in parenthesis), the pre-implementation group of parents reported they were prepared to bring their baby home (9.5), felt comfortable using therapy techniques (7.5), understood developmental expectations (8.5), and felt knowledgeable about when to seek therapy after discharge (6.75). However, when analyzing the qualitative answers (Appendix D), these parents still did not understand the basic education provided to them by therapists. For example, one parent who failed to answer the qualitative questions reported nothing lower than a 9 on the Likert scale questions suggesting she Running head:IMPROVING NICU PARENT EDUCATION 20 was well prepared to bring her baby home. However, this same parent asked questions such as how to keep the baby from having a flat head and how many times the baby should void per day after completing the survey. This shows that this particular parent did not fully understand education provided as tummy time was an extensive topic covered even pre-implementation. Other parents gave more general answers to in qualitative answers when asked how one can tell a baby is stressed such as: crying, clenching eyes shut, and red face. Through examining the data gathered, it is easy to see that these parents did not truly understand the education provided as there were large discrepancies between Likert scale and qualitative answers. The second group of parents, post-implementation, reported more consistent information than the first group. These parents reported nothing lower than an 8 on Likert scale questions also demonstrating preparedness to bring their babies home. However, on qualitative questions the post-implementation group provided more specific examples that one would not typically think of when discussing a baby who is showing stress such as: yawning, sneezing, finger splay, and an increased heart rate. Opposite of the first group of parents, the second group demonstrated increased understanding of education provided through the newly implemented program. As a general observation based off of the stress sign trackers, infants whose parent(s) were available and educated properly tended to show less stress signs and soothed easier than those without proper education. Discussion Parents in the NICU desire to care for their infant (Dusing et al., 2008). However, without proper education to enable a positive experience for infants in the NICU, this goal becomes difficult to achieve. If parents do not understand their babys communication and developmental needs, they may unknowingly cause increased stress and possibly hinder their babys Running head:IMPROVING NICU PARENT EDUCATION 21 development. Therapists in the NICU provide a differing viewpoint from the medical team. This puts them in a special position to facilitate a positive experience for babies and their families in the NICU through proper education (Dusing et al., 2008). In order to provide proper education that is understood by parents, it is important for therapists to have an efficient process. The aim of this project was to develop and implement a program allowing parent involvement in their infants care through receiving education individualized to their needs. The implemented program consisted of methods such as facilitating hands-on learning and discussion, providing access to written materials, blogs, apps, and books in order to enable people with different learning styles and preferences the same opportunity to learn. The program will consist of educational videos for use upon admission and discharge; however, due to the amount of time required to produce these videos, I was unable to be present for the completion of the videos. I did leave the team with the necessary information and materials (video script in appendix E) to ensure an easy process of completing this task. Data collected from parent surveys suggested that the newly implemented program was beneficial in parent learning as the post-implementation group of parents demonstrated an increased level of understanding of the education provided when compared to the pre-implementation group of parents. Similarly, findings by Dusing et al. (2008) showed improved understanding of education when therapists used multiple methods of education. Implications Neonatal therapists and other members of the neonates medical team should consider these results when providing care in the NICU. Other studies support this model of practice in that education should begin as soon as it is clear the infant will survive (Griffin & Abraham, 2006), and the education provided should appeal to multiple types of learners (Dusing et al., Running head:IMPROVING NICU PARENT EDUCATION 22 2008; Hunter et al., 2019; Sneath, 2009). By giving parents the opportunity to communicate their learning preferences and availability, therapists are able to provide the best family-centered care possible by tailoring treatment times and education to each individual. Properly educating parents on the topic of the premature infant is not only beneficial to the parent but the baby as well. It is imperative to keep the process of brain development at the forefront of the mind when dealing with infants in the NICU. Stress caused by early delivery can have a lasting effect on an infants brain due to where infants are in the developmental process at this gestational age range (Altimier & Phillips, 2016). This program allows parents to be an integral part in sufficiently supporting their infants development through positive experiences and bonding. As parents receive the proper education fitted to their specific needs, positive experiences are enhanced while negative experiences are decreased. Limitations Although this project holds valuable information and resources, it does not come without limitations. Due to the low census throughout my time at the IUH North NICU, few families willing to participate in the survey, and the limited amount of time I was able to spend creating and implementing the program, there was a small sample size to pull data from. Each of these limitations created a barrier in determining the true level of understanding of parents knowledge. Additionally, some parents did not complete the survey fully; therefore, determining the impact that certain demographics may have on understanding education was restricted. All limitations listed make conclusions drawn less generalizable to all parents who have a baby in the NICU. Although difficult to generalize, it was clear that there was an improvement in understanding when comparing pre- and post- parent survey responses. Recommendations Running head:IMPROVING NICU PARENT EDUCATION 23 Further improvements are still warranted as this project was completed in a such short period of time. One recommendation is to have more flexible hours to allow availability to parents in the NICU, so the OT onsite plans to work with her manager to change her NICU hours to allow for afternoon/evening availability on a regular basis. She is also working to increase her presence on the unit as well as devoting uninterrupted time to patients and families in the NICU. Continued efforts to improve efficiency of communicating with all parents is also warranted as this was a main concern discussed in the post-implementation therapist interviews. The project targeted parents who are unavailable during typical business hours. The intent with the OT changing her schedule is to be more available to this population; however, even with different hours these parents may still require other means of communication. In this case, therapists schedules should allow time and a method to make phone or video calls to parents in order to promote participation in their infants care even if they are not physically present. This process will take time, effort, and cooperation on each team members part to make the necessary changes in scheduling, billing, and productivity. Nonetheless, it would benefit the infants as well as their caregivers. Another recommendation when considering communication is ensuring therapy team members are communicating with each other in order to provide continuity of care across all therapy disciplines. The therapy team should work together to ensure the use of the newly implemented program is effective and is providing each family with the same quality of education. It is also imperative to provide equal treatment and opportunity to all patients regardless of their demographics or preferred language. Because of this, I recommend having a process in place that allows equal access to all educational materials including therapists and the medical team themselves. This means in addition to having all printed and virtual materials translated, Running head:IMPROVING NICU PARENT EDUCATION 24 translators should be available anytime non-English speaking caregivers are present. Having this availability prevents the overwhelming event that occurs when every member of the infants care team needs to speak with the parents in a one- to two-hour time frame every few weeks. This is not an easy task and may warrant another student project. Due to the program being new to the therapy team and implementation happening rather quickly, it would benefit the team to issue a follow-up parent survey once they believe all changes have been made successfully. This process will take time as some of these changes are quite large (i.e. changing schedules, changing productivity, etc.). Issuing this follow-up survey would determine if further changes need to occur and if the program is fully sustainable and effective. Running head:IMPROVING NICU PARENT EDUCATION 25 References American Occupational Therapy Association (2018). Occupational therapys role in the neonatal intensive care unit. American Journal of Occupational Therapy, 72(Supplement_2), 7212410060p1. https://doi.org/10.5014/ajot.2018.72S204 Als, H. (1986). A synactive model of neonatal behavioral organization: Framework for the assessment of neurobehavioral development in the premature infant and for support of infants and parents in the neonatal intensive care environment. Physical & Occupational Therapy In Pediatrics, 6(34), 353. https://doi.org/10.1080/J006v06n03_02 Altimier, L., & Phillips, R. (2016). The neonatal integrative developmental care model: Advanced clinical applications of the seven core measures for neuroprotective familycentered developmental care. Newborn and Infant Nursing Reviews, 16(4), 230244. https://doi.org/10.1053/j.nainr.2016.09.030 Bader, L. (2010). Intervention techniques for OTs in the NICU. 15, 711. Brega, A. G., Freedman, M. A. G., LeBlanc, W. G., Barnard, J., Mabachi, N. M., Cifuentes, M., Albright, K., Weiss, B. D., Brach, C., & West, D. R. (2015). Using the health literacy universal precautions toolkit to improve the quality of patient materials. Journal of Health Communication, 20(sup2), 6976. https://doi.org/10.1080/10810730.2015.1081997 Committee on hospital care and institute for patient- and family-centered care. (2012). Patientand family-centered care and the pediatricians role. PEDIATRICS, 129(2), 394404. https://doi.org/10.1542/peds.2011-3084 Running head:IMPROVING NICU PARENT EDUCATION 26 Craig, J. W., Glick, C., Phillips, R., Hall, S. L., Smith, J., & Browne, J. (2015). Recommendations for involving the family in developmental care of the NICU baby. Journal of Perinatology, 35(S1), S5S8. https://doi.org/10.1038/jp.2015.142 Dusing, S. C., Murray, T., & Stern, M. (2008). Parent preferences for motor development education in the neonatal intensive care unit: Pediatric Physical Therapy, 20(4), 363 368. https://doi.org/10.1097/PEP.0b013e31818add5d Dusing, S. C., Van Drew, C. M., & Brown, S. E. (2012). Instituting parent education practices in the neonatal intensive care unit: An administrative case report of practice evaluation and statewide action. Physical Therapy, 92(7), 967975. https://doi.org/10.2522/ptj.20110360 Gibbs, D., Boshoff, K., & Lane, A. (2010). Understanding parenting occupations in neonatal intensive care: Application of the person-environment-occupation model. British Journal of Occupational Therapy, 73(2), 5563. https://doi.org/10.4276/030802210X12658062793762 Griffin, T., & Abraham, M. (2006). Transition to home from the newborn intensive care unit: Applying the principles of family-centered care to the discharge process. The Journal of Perinatal & Neonatal Nursing, 20(3), 243249. Hunter, L. M. L., Blake, S., Simmons, C., Thompson, J., & Derouin, A. (2019). Implementing a parent education program in the special care nursery. Journal of Pediatric Health Care, 33(2), 131137. https://doi.org/10.1016/j.pedhc.2018.06.007 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), 923. https://doi.org/10.1177/000841749606300103 Running head:IMPROVING NICU PARENT EDUCATION 27 Milgrom, J., Newnham, C., Anderson, P. J., Doyle, L. W., Gemmill, A. W., Lee, K., Hunt, R. W., Bear, M., & Inder, T. (2010). Early sensitivity training for parents of preterm infants: Impact on the developing brain. Pediatric Research, 67(3), 330335. https://doi.org/10.1203/PDR.0b013e3181cb8e2f Newnham, C. A., Milgrom, J., & Skouteris, H. (2009). Effectiveness of a modified mother infant transaction program on outcomes for preterm infants from 3 to 24 months of age. Infant Behavior and Development, 32(1), 1726. https://doi.org/10.1016/j.infbeh.2008.09.004 PDSA: Plan-Do-Study-Act (Rapid Cycle Improvement)Minnesota Dept. Of Health. (n.d.). Retrieved March 30, 2020, from https://www.health.state.mn.us/communities/practice/resources/phqitoolbox/pdsa.html Price, M. P., & Miner, S. (2009). Mother becoming: Learning to read Mikalas signs. Scandinavian Journal of Occupational Therapy, 16(2), 6877. https://doi.org/10.1080/11038120802409739 Safeer, R. S., & Keenan, J. (2005). Health literacy: The gap between physicians and patients. American Family Physician, 72(3), 463468. Smith, G. C., Gutovich, J., Smyser, C., Pineda, R., Newnham, C., Tjoeng, T. H., Vavasseur, C., Wallendorf, M., Neil, J., & Inder, T. (2011). Neonatal intensive care unit stress is associated with brain development in preterm infants. Annals of Neurology, 70(4), 541 549. https://doi.org/10.1002/ana.22545 Sneath, N. (2009). Discharge teaching in the NICU: Are parents prepared? An integrative review of parents perceptions. Neonatal Network, 28(4), 237246. https://doi.org/10.1891/07300832.28.4.237 Running head:IMPROVING NICU PARENT EDUCATION 28 Wigert, H., Berg, M., & Hellstrm, A.-L. (2010). Parental presence when their child is in neonatal intensive care. Scandinavian Journal of Caring Sciences, 24(1), 139146. https://doi.org/10.1111/j.1471-6712.2009.00697.x Wright, C. A., & Kaiser, A. P. (2017). Teaching parents enhanced Milieu teaching with words and signs using the teach-model-coach-review model. Topics in Early Childhood Special Education, 36(4), 192204. https://doi.org/10.1177/0271121415621027 Running head:IMPROVING NICU PARENT EDUCATION Appendix A Therapist Interview Questions 1. On a scale from 0-10 (0 being the least satisfied, 10 being the most), how satisfied are you with the current process of educating parents who are unavailable during regular work hours? 2. Describe why you gave a __. 3. Do you feel your current process of educating parents who are unavailable during your work hours is efficient/improved? Why or why not? 4. Do you feel your current process of educating parents who have micro preemies is efficient/improved? Why or why not? 5. What areas, if any, do you think would benefit from change? 29 Running head:IMPROVING NICU PARENT EDUCATION Appendix B Parent Survey 30 Running head:IMPROVING NICU PARENT EDUCATION Appendix C Paper Program Materials Created 31 Running head:IMPROVING NICU PARENT EDUCATION 32 Running head:IMPROVING NICU PARENT EDUCATION 33 Running head:IMPROVING NICU PARENT EDUCATION 34 Running head:IMPROVING NICU PARENT EDUCATION 35 *gestational guide similar was created for less than 26 weeks, 26-28 weeks, 28-30 weeks, 3032 weeks, and 32-36 weeks Running head:IMPROVING NICU PARENT EDUCATION 36 Running head:IMPROVING NICU PARENT EDUCATION 37 Running head:IMPROVING NICU PARENT EDUCATION 38 Appendix D Parent Answers to Qualitative Questions Pre-implementation List 3 or more ways that you have noticed your baby shows he/she is overwhelmed or stressed. - can't console/calm, frantic squirming, pushing away - cries, shuts eyes tight, binkie doesn't help - crying, red face List 3 or more ways that you have noticed your baby is ready to interact. - looking around, rooting, smiling - calm, eyes open Post-implementation List 3 or more ways that you have noticed your baby shows he/she is overwhelmed or stressed. - hands in front of face, yawning during activity, crying, increased HR - sneezing, sprawled fingers/arms, yawning - crying List 3 or more ways that you have noticed your baby is ready to interact. - high level of alertness, posture, fluid movements - eyes open, calm, curled inward, self-soothing - alert, looking around Running head:IMPROVING NICU PARENT EDUCATION 39 Appendix E Video Script Tummy time: The first and most important thing to remember when thinking of tummy time is that your baby should always be directly supervised when they are not flat on their back. When used correctly tummy time is very beneficial for your childs development. Tummy time is important for several reasons. First, it prevents your baby from having a flat head by safely getting pressure off the back of the head. This is important to do because a baby should always sleep on their back when unsupervised, and they need lots of sleep! Tummy time also helps your baby get stronger. By trying to lift his/her head he/she is strengthening muscles necessary to support the neck and head. By pushing his/her arms against a surface he/she is strengthening his/her arms which is an important steppingstone for playing and eventual crawling. Tummy time also helps babies develop proprioception which is the ability to know where your body is in space. This is also a very important steppingstone in your babys development. A great way to do tummy time with your baby is by holding them chest to chest. You can start by holding your baby chest to chest while sitting in a chair. As your baby gets stronger, you can gradually recline until your baby is able to tolerate you holding him/her while lying flat on your back. You can also place your baby on their tummy on a clean, flat surface like a padded play mat on the floor. Be sure that your babys mouth and nose are not covered or face down into the mat. If your baby doesnt like being flat on the floor you can try placing a hand on his/her bottom to help offset the weight of their head. You can also try placing him/her over a rolled blanket/towel or propped over your leg. This helps your baby prop him/herself up so he/she can see, explore, and interact with you and toys. It is always best to make tummy time as fun as possible. Have some of your babys favorite toys, mirrors, siblings, or another caregiver to entertain him/her so he/she will stay happy while on his/her tummy! Babies should be getting 2 hours or more of tummy time per day in order to get stronger, reduce the risk of a flat head, and meet his/her developmental milestones. Your tummy time session does not have to be all at one time. We encourage you to portion this time throughout the day. Remember, your baby should always be directly supervised when on his/her tummy and should always be sleeping on their back alone in their crib. Swings/chairs: Swings and other positioning aids can be helpful if your baby isnt asleep and you need to do a quick chore like laundry or make a snack, but the time your baby spends in these devices should be limited to 30 minutes or less at a time. Keeping your baby in a swing or mamaroo for extended periods of time can have serious consequences such as plagiocephaly or even death. Spending too much time in swings puts more pressure on the back of the head as babies spend a lot of time laying on their backs, which causes a flat head. Babies should never be unattended while sitting in a swing because of the position the swing puts your baby in. Swings promote forward rounding of the shoulders and tucking of the chin especially when a baby is relaxed. Not only does this put your baby at risk for tightened muscles, but if your baby were to fall asleep, they could relax into a position that closes off his/her airway causing suffocation. It is important to remember that you should always provide direct supervision of your baby unless he/she is sleeping alone in a crib/bassinet with no blankets, pillows, stuffed animals, or any other objects. Running head:IMPROVING NICU PARENT EDUCATION 40 Development Tracking: Developmental milestones are specific skills that have been put into place to monitor how a child is developing based off of the average age other children are able to complete them. These milestones are building blocks needed to do things like holding his/her head up, sitting, crawling, walking, and talking. Babies who spend time in the NICU are at a higher risk for being delayed in meeting these milestones, therefore, it is important to understand when your baby may need some extra support, like therapy, after leaving the hospital. One way to be sure your baby isnt more delayed than expected, is to track your babys developmental milestones. This helps you and your pediatrician catch more subtle cues that your baby may need additional support. The Center for Disease Control and Prevention (CDC) has provided a way to track your babys development in order to allow parents to be proactive in getting the care their baby needs. The milestone tracker comes in a paper version and an app which is available on the Apple App Store as well as Google Play. The paper version has some pictures to reference, but the app has more pictures in addition to videos to help you understand what you are looking for. Both the app and the paper version provides suggestions for how you can best help your baby reach his/her milestones. When tracking your babys development, it is important to remember to adjust for your babys prematurity if they were born earlier than 37 weeks gestation. If you are using the app, it will provide the correct checklist based on your babys adjusted age for you as long as you select the box indicating your baby was born prematurely. In order to adjust your babys age, take your babys age in weeks and subtract how many weeks early he/she was born. For example, if your baby was 14 weeks old but was born 4 weeks early your babys adjusted age would be 10 weeks. You should adjust for your babys prematurity until he/she is 2 years old. Some smaller babies who were less than 1000 grams at birth may need a little more time to catch up, so you can adjust for their prematurity until they are 3 years old. Tracking your babys milestones at home can help you and your pediatrician catch concerns early. You can bring your paper tracker with you to appointments to discuss, or if you are using the app, it will provide a summary that can be emailed or printed. This information would also be useful to give to any therapist your baby may see in the event they need additional services. That way you know what types of questions to expect to answer during an evaluation. The more information you have the better! First Steps: One option you have if you have concerns, but you dont want to wait to get into see your pediatrician is called First Steps, also known as Early Intervention. This program allows parents of children under 3 years old to set up an evaluation with an occupational, physical, and speech therapist in the comfort of your own home without requiring a referral from a physician. If you call and request an evaluation, an appointment will be set up for a team of therapists come to your house. The team will complete a standardized assessment and determine if your baby needs services. If the team decides your child would benefit from therapy, a plan of care is made and the necessary therapists visit your home providing services on a regular basis until it is no longer needed or your child turns 3 years old. For more information about Indiana First Steps you can talk with one of your therapists or visit www.in.gov/fssa/firststeps/  ...

... Running head: IMPLIMENTING A SMALL GROUP Implementing a Small Group for Young Adults with Disabilities: A Doctoral Capstone Experience Corrine Sisson, OTS University of Indianapolis 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: Katie Polo, DHS, OTR, CLT-LANA 1 IMPLIMENTING A SMALL GROUP A Research Project Entitled Implementing a Small Group for Young Adults with Disabilities: A Doctoral Capstone Experience Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Corrine Sisson, OTS Approved by: Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date IMPLIMENTING A SMALL GROUP Abstract With the social isolation tied to the coronavirus pandemic confounding with the lack of inclusion already noted, individuals with disabilities are struggling more than ever to find a sense of community (Courtenay & Perera, 2020). According to Wuthnow (1994), one source of community that individuals turn to are religious small groups in order to participate in spiritual practices along with others. Several researchers have found that those with disabilities participate less in social and spiritual activities than their typically developing peers (Arakelyan, Maciver, Rush, O'Hare, & Forsyth, 2019; Hall, 2017; Whitehead, 2018). For this doctoral capstone project, I identified the needs of young adults with disabilities in a local church. Lack of inclusion, access to spiritual resources, and social opportunities were the major barriers for this population. A small group was implemented and data was collected from five individuals regarding socialization and spiritual practices. Through the project, I found that implementing a small group for adults with disabilities increased the members perception of their social opportunities as well as spiritual practices. IMPLIMENTING A SMALL GROUP Implementing a Small Group for Young Adults with Disabilities Due to the recent impacts of the coronavirus pandemic, a sense of community and belonging is more necessary than ever. With world-wide quarantining and the resulting social isolation, mental health has been a key topic of discussion for many populations. After reviewing literature about social isolation, multiple researchers have concluded that the general population is at a greater risk for developing or worsening mental health conditions such as depression, anxiety, and loneliness (Pietrabissa & Simpson, 2020; Usher, Bhullar, & Jackson 2020). The rise of these mental health conditions has already been reported for those with disabilities and their caretakers. According to Asbury et al. (2020), coronavirus and its effects have been related to an increase in anxiety and stress for both parents and children with disabilities. To combat the negative effects of the pandemic, some individuals have sought out religion and spirituality. According to Lucchetti et al. (2020), spirituality and religion has been related to positive mental health and decreased feelings of loneliness. Because of its positive effects, the use of religion and spiritual practices have increased since the start of the pandemic (Lucchetti et al. (2020). Even prior to the pandemic, researchers have deemed religion and spirituality an essential aspect of American life. In one study, approximately 95% of Americans report belief in some variation of a deity, and two-thirds report memberships to an organized congregation (LaRocque & Eigenbrood, 2005). Christian churches and congregations often offer the community of believers more resources to learn about the bible and discuss spirituality than just weekly services. One outlet of spiritual growth commonly used within the Christian faith is a small group. Individuals join small groups for various individualized reasons. According to Wuthnow (1994), millions of people decide to join small groups to create a community that will stand to support each other in seeking spirituality. IMPLIMENTING A SMALL GROUP In these groups, members of the congregation with common interests, ages, genders, or difficulties meet weekly to go over and discuss a curriculum. Generally, the goal of these groups is to create accountability among the members and to discuss spirituality, but researchers have noted many other positive outcomes as well. According to Swinton (2002), religious-based groups, such as the one described, can increase personal feelings of acceptance and self-worth. By meeting regularly, relationships and bonds among the members often form, creating an atmosphere of trust and freedom to share intimate details about ones life. Because of this, the members are often encouraged to share and to use spirituality and religious practices to overcome or face difficulties. The following literature review will provide evidence of the need for inclusion in spiritual organizations for those with disabilities within small groups. This literature will then inform program development for a Christian small group with young adults with developmental disabilities. The goals of the group are to increase socialization and the availability to practice spirituality and accountability for young adults with developmental disabilities as well as create sustainability for the program. The purpose of this group is to provide the same opportunity for young adults with a developmental disability to participate in a religious group as their typically developing peers, in an environment set up for each individual to thrive. Literature Review Lack of Inclusion Researchers have found that disability can create a barrier for overall participation. Several researchers have concluded that individuals with disabilities take part less in communitybased activities than typically developing individuals (Arakelyan, Maciver, Rush, O'Hare, & Forsyth, 2019; Hall, 2017). Church services and related gatherings have also been cited to IMPLIMENTING A SMALL GROUP exclude those with disabilities (Whitehead, 2018). Whitehead (2018) found that, although individuals with and without disabilities report the importance of faith similarly, children with intellectual, developmental, and behavioral disabilities are more likely to have never attended church than children without disabilities. Other researchers have also found exclusion within the church community noting, not only issues with physical access but individuals with disabilities not feeling understood by the congregation as well (Hobbs, Bonham, & Fogo, 2016). In agreement, Waldock and Forrester-Jones (2020) found the majority of church goers have little knowledge about disability as well as varying attitudes towards those with disabilities. The researchers also concluded that the church does not educate on disability or inclusion (Waldock & Forrester-Jones, 2020). The established lack of inclusion may be partly due to the lack of the appropriate services provided within the church. A study conducted by LaRocque and Eigenbrood (2005), on accessibility within the church, found that only eight of the 91 churches in the study indicated were there on a survey item asking about the churchs inclusion. Eleven of the churches participating in the study indicated they had not started to work on inclusion issues (LaRocque & Eigenbrood, 2005). Carter, Boehm, Annandale, and Taylor (2016) also conducted a study on inclusion within a congregation, finding similarly astounding results. The researchers found that less than half of the parents of individuals with disabilities indicated any additional supports in their churches for people with special needs (Carter, et al., 2016). Researchers have also found this trend of exclusion within small group attendance. Ault, Collins, and Carter (2013), conducted a study on children and young adults with intellectual and developmental disabilities participation within the church. The researchers found that of their 413 participants, 85% of them attended church services, while only 14% participated in a small IMPLIMENTING A SMALL GROUP group (Ault, Collins, & Carter, 2013). Therefore, according to Ault, Collins, and Carter (2013), approximately 16.5% of the individuals with disabilities that regularly attend church services participate in a small group. In contrast, about 50% of typically developing American adolescents participate in religious youth groups (Smith, Denton, Faris, & Regnerus, 2002). These staggering numbers indicated very few individuals with disabilities could participate and receive the various benefits of being a member of a small group. Spirituality One beneficial aspect of participating in a small group is the outlet for discussion and study of spirituality. According to Carter and Boehm (2019), spiritual practices in the Christian faith can include prayer, giving, rest, scripture reading, devotionals, and fasting. Within a small group, members can give examples of how these disciplines have impacted their life, as well as encourage other members attempting to implement the practices into their daily life. In the field of occupational therapy, therapists view spirituality as an essential and necessary aspect of life. Howard and Howard (1997), indicate that spirituality is intertwined within all aspects of life and how each individual spends their time. The researchers indicate that an outlet for spirituality can help those who struggle emotionally with their disabilities (Howard & Howard, 1997). Through this outlet, these individuals can find true meaning in the various aspects of their life (Howard & Howard, 1997). Researchers have noted other benefits of spirituality in agreement with Howard. Culliford (2002) indicated that spirituality gives a sense of meaning. The researcher found spirituality provides the individual a sense of peace as well as a platform for personal growth as well (Culliford, 2002). Researchers have also found other benefits to mental and emotional health. A study conducted by Boehm & Carter (2019), on parents of individuals with disabilities, IMPLIMENTING A SMALL GROUP concluded that 83% of the parents felt a sense of hope tied to the beliefs and religious practices. The researchers also found that 73% of the parents reported that prayer or meditation was a useful tool in decreasing stress. With the various emotional impacts of a disability, a platform designed to increase spirituality would be beneficial to the emotional and mental health of the members. Sango and Forrester-Jones (2018) also concluded that those with intellectual and developmental disabilities have spiritual beliefs and participate in religious practices when given the appropriate resources. Therefore, churches should give those with disabilities that have spiritual beliefs, the support they require to participate in spiritual and religious practices to increase their overall wellbeing. Social Participation With the lack of inclusion in community-based activities, including the church, individuals with developmental disabilities have fewer opportunities for regular communication with others. Sango and Forrester-Jones (2018) found that participation in spiritual or religious practices not only plays an essential role in overall wellbeing but also increase socialization in those with disabilities. Socialization is important not only for developing a supportive community but can also lead to skill acquisition. According to Vlachou and Stavroussi (2016), social interactions lead to skills needed for problem-solving and further communication skills. Therefore, regularly attending a religious gathering or small group may also aid in increasing social skills in those with disabilities. Researchers have found lack of inclusion and regular social participation among those with disabilities also has negative effects on ones wellbeing. A study conducted by Bredewold, Tonkens, and Trappenburg (2016), on the solidarity of people with disabilities, indicated that individuals with disabilities feel shame and have low self-esteem about social situations, which IMPLIMENTING A SMALL GROUP can lead to isolation. Because of this isolation, those with disabilities are not regularly practicing social skills, and the lack of interactions may lead to loneliness (Bredewold, Tonkens, & Trappenburg (2016). In order to prevent isolation and loneliness, a regularly accessible community is essential to reach the individual. Cummins and Lau (2003) conducted a study on community integration for those with intellectual and developmental disabilities, concluding that having a community is beneficial when it is supportive and dependable. The researchers also concluded that those with disabilities are more likely to find benefits in a community of members that also have similar disabilities and therefore, have had similar experiences (Cummins & Lau, 2003). By having a community, one can feel supported by the members and be able to receive assistance when needed. Small groups can act as a community of similar individuals that meet regularly to discuss various aspects of their lives. Boehm and Carter (2019) found that less than half of the parents of individuals with disabilities that attended church regularly participated in a small group or religious education class. In relation, the researchers also found that only 64% of the parents knew someone in the congregation they could ask for help, and only 35% of parents reached out to a member of the congregation for help (Boehm & Carter, 2019). By participating in a group outside of regular church services, these parents may have developed more relationships within the congregation that they would feel able to turn to others for help when needed. Theory and Frame of Reference The model that will act as a guide for the doctoral capstone experience is the Ecology of Human Performance (EHP), and the frame of reference chosen is the Lifespan frame of reference. The EHP is appropriate to use for the experience because it focuses on changing the IMPLIMENTING A SMALL GROUP environment to increase the performance range of the individual. The concept of the person in the EHP model will consist of the members of the life group. Each member will be a young adult with a developmental disability. The context would be the physical, social, cultural, temporal environment in which the small group takes place. With the various reasons for lack of inclusion previously noted, churches should make accommodations to increase the performance range of the members. These accommodations will include a comfortable and familiar environment, materials that are comprehensible by the members, and volunteers to welcome and assist the members. The lifespan frame of reference is appropriate because the focus of the group is on completing age-appropriate tasks. The lifespan frame of reference will be used as a lens to view the members and the goals of the group. As young adults, the goals will focus on age-appropriate participation and socialization within the group. The assessment will also include increased ageappropriate social and spiritual participation outside of the group. Conclusion No matter the disability, all members of a congregation should have equal access to all resources offered. According to White (2017), the church has not only a humanitarian responsibility but a biblical obligation to meet the spiritual needs of all of the members of the congregation, this includes those with disabilities. The researcher stated that everyone was made in the image of God and, therefore, should be cared for equally (White, 2017). Those with disabilities should be able to receive the various benefits described from participating in all that the church has to offer, including a small group. Appropriate accommodations should be made for those with disabilities to participate in small groups. According to LaRocque and Eigenbrood (2005), while many congregations are aware of the need to serve individuals with disabilities, they do not know where to start. This project would use the background education and resources IMPLIMENTING A SMALL GROUP provided with a doctor of occupational therapy degree to assist the church in creating a small group for those with developmental and intellectual disabilities. Methodology Procedures After receiving an exempt study approval by the University of Indianapolis Human Research Protections Program, I started working with Northview church to determine the needs of those with disabilities within the church. Per the request of the site, a small group was developed to fit the need of inclusion, socialization, and spirituality of adults with disabilities within the church. After performing a more in depth needs assessment, it was clear that the adults with disabilities within the church felt unseen. Programs were offered for individuals with disabilities under eighteen, but no formal program was set in place for adults. At that time, adults with disabilities that could not or didnt want to sit through the service with the congregation were offered a room with some sensory equipment to watch the service on a screen. After talking with volunteers and parents, it was clear that the adults in this room rarely watched the service or were any organized curriculum. I aimed to determine if participating in a weekly small group would increase social opportunities and spiritual practices amongst young adults with developmental disabilities. The group was offered both in person and virtually via Zoom to include those staying at home due to the coronavirus. The small group began on February 7th 2021 with the concluding data collected on March 14th 2021. The group met weekly during regular church service for 6 weeks. Data Collection After consulting with the special needs ministry coordinator and viewing different small group outcome measures, I decided that no previously used outcome measure was appropriate IMPLIMENTING A SMALL GROUP for the study. With the unique scope of the study and the participants, I developed questionnaires to determine the success of the small group. The survey required easy viewing, simplicity and brevity to encompass all members. I determined the measure could be read to the participants and/or filled out for the participants if needed. The social engagement questionnaire was created from consulting with the special needs coordinator and viewing several social participation surveys (see appendix A for questionnaire). The questionnaire captures self-perceived social opportunities. The spiritual practices questionnaire was adapted from a survey for youth groups by Powell (2015) (see appendix B for questionnaire). The most simple and pertinent items were selected from this survey to ensure the questionnaire was brief and easy to comprehend. The questionnaire tracks adherence to spiritual practices and comfortability within the small group. The volunteers and parents were also asked for feedback after every session as well as at the conclusion of the project. Program Structure Each session started with a game or ice breaker to make the participants more comfortable. Then the leader would start the lesson. The curriculum utilized in the small group was adapted from the churchs childrens ministry. The series entitled Kid Theology consists of a video series about basic principles of the Christian faith including prayer, salvation, and baptism. The start of the video and transitions were taken out to make the video more appropriate for adults. For the young adult group, the members watched a portion of the video that explained in depth the topic of the week. Questions were developed about the topic to facilitate discussion within the group members. After the questions were discussed, the leader would ask for prayer requests then would pray over the group. With any additional time, the group would be given a craft, worksheet, or take-home activity. After concluding a curriculum series, a less structured IMPLIMENTING A SMALL GROUP meeting would be held. These meetings included worship times, additional games, and volunteer oppurtunities. Participants The participants were recruited by using the churchs information system to identify all young adults with disabilities who have attended or are currently attending the church. Ten participants were identified and an email was sent to their parents. Of the participants identified, 4 attended the first session. The group consisted of two females and two males ages 16-25. Of the participants attending the first group one attended virtually and three attended in person. As the group continued to meet, 4 new members joined. As new members joined, they were given the questionnaires. The inclusion criteria were flexible depending on individual circumstances. Ideally the group would consist of members older than 18 with a diagnosed disability preventing them from joining a neurotypical life group. One participant was 16 years old and was included in the group per parent request. No participants that displayed interest in the group were turned away. Results Questionaires The questionaires were administered again in six weeks to determine any changes in socialization or spiritual practices. For this session 2 members attended and the additional 3 participants concluding data were collected the following week. Three participant surveys were not able to be collected due to not returning during the project time frame. Those that only attended one time before the data collection were not included in results. The results of each questionaire are as shown in Table 1 and Table 2. It should be noted that each item had an increase in positive responses and the majority of members indicated improvements in social IMPLIMENTING A SMALL GROUP opportunities and spiritual practices. Only one member indicated that they never hang out with friends, attend events, or receive invites. As for the spiritual practices, no participants indicated that they werent growing spiritually or werent praying several times a week and all of the members stated that they felt loved and accepted within the small group. Only one participant indicated that they do not read their bible several times a week. Three participants did indicate that they do not share their faith with their friends. Table 1 Social Oppurtunities Before and After Implimenting the Small Group Never Sometimes Frequently Always Hang out with Friends Pre Post 2 1 3 3 0 0 0 1 Attend Events Pre Post 2 1 1 2 2 2 0 0 Receive Invites Pre Post 4 1 1 0 0 1 0 3 Table 2 Religious Practices Before and After Implimenting the Small Group Agree Disagree Undecided Spiritual Growth Pre Post 1 3 1 0 3 2 Prayer Pre Post 1 3 3 0 1 2 Read the Bible Pre Post 1 3 4 1 1 1 Share about God Pre Post 1 2 1 3 3 0 Loved and Accepted Pre Post 4 5 1 0 0 0 Parent and Volunteer Qualitative Feedback Each parent that provided feedback indicated that their adult children enjoyed attending the small group. Multiple parents indicated that their child enjoyed the worship session and the oppurtunities for socialization. One parent sugguested a take home card or sheet to provide IMPLIMENTING A SMALL GROUP talking points for the family to ask the participant about the group meeting. She stated that her daughter said she enjoyed group but would not give details about what was discussed which created difficulty for the family to engage in conversation about the group. Another parent suggested incorporating physical activity into the group time. Volunteers indicated that positive aspects of the small group include the worship session, the curriculum, and flow of the meetings. One volunteer stated that the small group has been successfully, unlike previous programs that have been offered. Another volunteer suggested implementing different games and ice breakers at the beginning of the meetings. There was a consensus that worship time should be included in every meeting, instead of just once a month. All of the volunteers indicated that they have enjoyed participating in the small group and that they think the members have benefited from the meetings. Discussion After participating in the small group, the amount of negative responses towards receiving social opportunities decreased and the most participants indicated an increase in social opportunities. Before participating in the group, most of the adults with disabilities indicated that they had few to no social opportunities. Similarly, the members of the small group indicated and increase in spiritual practices after attending the group. The majority of the members indicated that they were growing in their relationship with the lord and that they read their bible and prayed regularly. It should also be noted, that all of the members of the small group indicated that they felt loved and accepted within the small group in the post data collection. Feeling accepted within the small group is important because researchers have indicated that feelings of acceptance have been linked to fewer depressive symptoms than those who do not feel accepted IMPLIMENTING A SMALL GROUP (Cage, Di Monaco & Newell 2018). The overall atmosphere of the group has been supportive and engaging as well. Modifications While there was a positive trend in the concluding data, minor changes were made and certain subjects were emphasized more. With the new curriculum series, more biblical readings and application were used within the sessions to encourage the members to engage with their bibles more. Also, due to the majority of the members indicating that they do not share their faith with others, talking about God has been emphasized within each session and will be implemented into the next curriculum series. The volunteers are now asking the members if anyone would like to pray for the group at the end of the meetings to promote the practice of prayer. So far no members of the group have volunteered to lead the prayer but most indicate that they are praying at home. Due to the feedback of the volunteers and parents, some other minor changes were made to the small group. Because of the overwhelmingly positive reactions to the worship day, music was incorporated into each meeting. A music therapist volunteered to lead a few songs at the beginning of every session. Some of the other volunteers have offered to lead dancing, along with the singing, to incorporate more physical activity into the meetings as well. A take home sheet was also made available to parents stating the series title, a description, and the discussion questions that will be asked each week. This sheet is included with the curriculum packets so it will not need to be created for each series, which ensures the practice will be more sustainable. I also found more games to create more opportunities for socialization and physical activity. With the modifications, parents and volunteers have noticed an excitement amongst the members about worship. There has also been more engagement from the members during IMPLIMENTING A SMALL GROUP worship time from members that usually would not participate. Adding the dancing element to some of the songs has also created another way for the members to engage during worship. Parents have also indicated that the take home sheet has been useful for initiating conversation with their child about the small group. One parent stated that she was able to use it to help her child engage with the curriculum content at home. The change in games has also created more excitement and increased socialization between the members. Implications Overall, the small group has been deemed a success by the volunteers, parents, and members. The continuation of the small group meetings allow for young adults with disabilities to socialize with peers as well as participate in spiritual practices. Because of the results of the program, the members of the congregation with disabilities will be offered a more unique and personalized experience within the church. The continued growth of the group and volunteers should be sustained by the church as more interest is found. In addition, more resources and advertisement should be directed towards the special needs ministry in order to reach more individuals with disabilities. As the small group moves forward after my capstone experience, the church should continue to emphasize reaching those with disabilities and offering more resource to the community of those with disabilities. In the final stages of the capstone project, I am working with the site to add another small group for young adults with disabilities. This group would meet during the evening on a weekend to offer an additional time for those that are not able to attend the morning meeting. The additional time also offers another opportunity for new volunteers to be involved in the ministry without overcrowding the current meeting time. This group would follow the same formatting and curriculum as the small group held on Sunday mornings. As the members and IMPLIMENTING A SMALL GROUP volunteers of the small group increase, the additional meeting time allows for growth while still maintaining a small group feel and social distancing per COVID-19 guidelines. Occupational Therapy This doctoral capstone project has brought light the lack of participation into several vital aspects of occupational therapy. The occupation of social participation has been neglected throughout the world as a result of the pandemic and resulting quarantining and those with disabilities continue to struggle with social isolation and lack of community. The same lack of social interaction was found within the special needs ministry as indicated by the responses to the social opportunities survey. The results of the project also were in agreement with the previously noted lack of availability to participate in spiritual practices. Within the field of occupational therapy, the goal is to aid individuals in what they want or need to do. With the impacts of the coronavirus, occupational therapists should consider small group programs as a vessel to increase socialization and spiritual practices for clients struggling with social isolation. Conclusion In conclusion, lack of inclusion, lack of access to spiritual resources, and fewer social opportunities have been noted amongst young adults with disabilities at Northview church as well as been indicated in previous research. The programdescribed was implemented to combat these barriers for the individuals with disabilities and create a community for support. As indicated by the results of the surveys, as well as parent and volunteer interview, the small group implemented has increased social opportunities and spiritual practices. As the awareness of the group has spread, more members are joining and more individuals are volunteering to facilitate the group. Because of its success and sustainability, the group is continuing on after the completion of the doctoral capstone project. IMPLIMENTING A SMALL GROUP References Arakelyan, S., Maciver, D., Rush, R., O'Hare, A., & Forsyth, K. (2019). Community-based participation of children with and without disabilities. Developmental Medicine and Child Neurology. doi:10.1111/dmcn.14402 Asbury, K., Fox, L., Deniz, E., Code, A., & Toseeb, U. (2020). 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, doi:10.1007/s10803-02004577-2 Ault, M. J., Collins, B. C., & Carter, E. W. (2013). Congregational participation and supports for children and adults with disabilities: Parent perceptions. Intellectual and Developmental Disabilities, 51, 48-61. doi:10.1352/1934- 9556-51.01.048 Boehm, T., & Carter, E. (2019). Facets of faith: Spirituality, religiosity, and parents of individuals with intellectual disability. Intellectual and Developmental Disabilities, 57(6), 512-526. doi:10.1352/1934-9556-57.6.512 Bredewold, F., Tonkens, E., & Trappenburg, M. (2016). Solidarity and reciprocity between people with and without disabilities. Journal of Community & Applied Social Psychology, 26(6), 534-550. doi:10.1002/casp.2279 Cage, E., Di Monaco, J. & Newell, V. (2018). Experiences of autism acceptance and mental health in autistic adults. J Autism Dev Disord 48, 473484. https://doi.org/10.1007/s10803-017-3342-7 Carter, E., & Boehm, T. (2019). Religious and spiritual expressions of young people with intellectual and developmental disabilities. Research and Practice for Persons with Severe Disabilities, 44(1), 37-52. doi:10.1177/1540796919828082 IMPLIMENTING A SMALL GROUP Carter, E., Boehm, T., Annandale, N., & Taylor, C. (2016). Supporting congregational inclusion for children and youth with disabilities and their families. Exceptional Children, 82(3), 372-389. Courtenay, K., & Perera, B. (2020). COVID-19 and people with intellectual disability: Impacts of a pandemic. Irish Journal of Psychological Medicine, 37(3), 231-236. doi:10.1017/ipm.2020.45 Culliford, L. (2002). Spirituality and clinical care: Spiritual values and skills are increasingly recognized as necessary aspects of clinical care. British Medical Journal, 325, 1434 1436. Cummins, R. A., & Lau, A. L. D. (2003). Community integration or community exposure? A review and discussion in relation to people with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16(2), 145157. doi:10.1046/j.14683148.2003.00157.x Hall, S. A. (2017). Community involvement of young adults with intellectual disabilities: their experiences and perspectives on inclusion. Journal of Applied Research in Intellectual Disabilities, 30(5), 859871. https://doi.org/10.1111/jar.12276 Hobbs, R., Bonham, C., & Fogo, J. (2016). Individuals with disabilities: Critical factors that facilitate integration in Christian religious communities. Journal of Rehabilitation, 82(1). Howard, B.S., Howard, J.R. (1997). Occupation as spiritual activity. American Journal of Occupational Therapy, 51, 181185. LaRocque, M., & Eigenbrood, R. (2005). Community access: A survey of congregational accessibility for people with disabilities. Journal of Religion, Disability & Health, 9(1), 55-66. IMPLIMENTING A SMALL GROUP Lucchetti, G., Ges, L. G., Amaral, S. G., Ganadjian, G. T., Andrade, I., Almeida, P., do Carmo, V. M., & Manso, M. (2020). Spirituality, religiosity and the mental health consequences of social isolation during Covid-19 pandemic. The International Journal of Social Psychiatry, 20764020970996. Advance online publication. doi:10.1177/0020764020970996 Pietrabissa, G., & Simpson, S.G., (2020). Psychological consequences of social isolation during COVID-19 outbreak. Front. Psychol. 11, 2201. doi:10.3389/fpsyg.2020.02201 Powell, R. (2015, January 27). These 2 Evaluation Tools are Worth Your Time [Web log post]. Retrieved January, 2021, from http://youthministryunleashed.com/these-2-evaluationtools-are-worth-your-time/ Sango, P., & Forrester-Jones, R. (2018). Spirituality and social networks of people with intellectual and developmental disability. Journal of Intellectual & Developmental Disability, 43(3), 274-284. doi:10.3109/13668250.2017.1310820 Smith, C., Denton, M. L., Faris, R., & Regnerus, M. (2002). Mapping american adolescent religious participation. Journal for the Scientific Study of Religion, 41(4), 597612. Swinton, J. (2002). Spirituality and the lives of people with learning disabilities. Tizard Learning Disability Review, 7, 2935. doi:10.1108/13595474200200037 Usher, K., Bhullar, N. and Jackson, D. (2020), Life in the pandemic: Social isolation and mental health. J Clin Nurs, 29: 2756-2757. doi:10.1111/jocn.15290 Vlachou, A., & Stavroussi, P. (2016). Promoting social inclusion: a structured intervention for enhancing interpersonal problem-solving skills in children with mild intellectual disabilities. Support for Learning, 31(1), 2745. doi:10.1111/1467-9604.12112 IMPLIMENTING A SMALL GROUP Waldock, K. E., & Forrester-Jones, R. (2020) An exploratory study of attitudes toward autism amongst church-going Christians in the south east of England, United Kingdom, Journal of Disability & Religion, 24:4, 349-370, dio:10.1080/23312521.2020.1776667 White, P. (2017). The biblical view of humanity and the promotion of the rights of persons with disabilities: The call and mission of the church. Acta Theologica, 37(1). Whitehead, A. (2018). Religion and disability: Variation in religious service attendance rates for children with chronic health conditions: Religion and disability. Journal for the Scientific Study of Religion, 57(2), 377-395. doi:10.1111/jssr.12521 Wuthnow, R. (1994). Sharing the journey: Support groups and America's new quest for community. Free Press. IMPLIMENTING A SMALL GROUP Appendix A Social Engagement Questionnaire 1.) How often do you hang out with/talk to friends? Never Sometimes Frequently Always 2.) How often do you attend events? Never Sometimes Frequently Always 3.) How often do you get invited to do things with friends? Never Sometimes Frequently Appendix B Always IMPLIMENTING A SMALL GROUP Spiritual Practices Questionnaire 1.) I am growing in my relationship with the Lord. Agree Undecided Disagree Undecided Disagree 2.) I pray every night. Agree 3.) I take time for personal Bible reading at least three times a week. Agree Undecided Disagree 4.) I have tried to share Jesus Christ with friends. Agree Undecided Disagree 5.) I feel loved and accepted in our small group. Agree Undecided Disagree  ...

... Providing Accessible Lifestyle Redesign-Inspired Wellness Programming to Older Adults During COVID-19 Rachel Wood Salyers OTD and MS Gerontology Student May 3, 2021 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the DCE advisor: Christine Kroll OTD, MS, OTR, FAOTA A Research Project Entitled Providing Accessible Lifestyle Redesign-Inspired Wellness Programming to Older Adults During COVID-19 Submitted to the School of Occupational Therapy at the University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Rachel Wood Salyers OTD and MS Gerontology Student Approved by: Christine Kroll OTD, MS, OTR, FAOTA DCE Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber OTR, MS, OTD Chair, School of Occupational Therapy Date PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 1 Providing Accessible Lifestyle Redesign-Inspired Wellness Programming to Older Adults During COVID-19 Rachel Wood Salyers OTD and MS Gerontology Student University of Indianapolis Authors Note I would like to acknowledge my professor Christine Kroll OTD, MS, OTR, FAOTA for her vested interest in all parts of the planning, implementation, and dissemination of my DCE. I would like to thank Loretta Sweeney and the OSU Extension Franklin County Office for partnering with me and allowing me to promote occupational therapy in a nontraditional setting. Lastly, I would like to thank my fianc Jon Stepp, my parents Barbara and Jeff Salyers, and my sister and brother-in-law Rebekah Salyers Hess and Eric Hess for their constant encouragement and support of my DCE and professional journey. PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 2 Abstract Objectives: The purpose of this study was to provide accessible programming inspired by the Lifestyle Redesign model to maximize health and wellbeing during the COVID-19 pandemic. Methods: Twenty-one older adults participated in the 8-week-long virtual programming which discussed the seven dimensions of wellness. This study used the outcome measures of the SF36, COPM, and the satisfaction survey. Results: The differences between the pre-assessments and the post-assessments indicate improvements in various areas of health, occupational performance, and satisfaction of the programming but a decline in the areas of role limitation due to physical health and pain. The satisfaction survey qualitative results indicated the themes of finding meaning in socialization, the organizational structure, and barriers to participating in the programming. Discussion: The Seven Dimensions of Wellness Programming fulfilled the needs of the participants by providing comprehensive multi-dimensional wellness education and applying wellness information to occupational performances (Taylor, 2017; Zechner et al., 2019). Keywords: COVID-19, Lifestyle Redesign, virtual programming, dimensions of wellness PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 3 Introduction Our society is currently dealing with the coronavirus disease 2019, also known as COVID-19 (Fuller & Huseth-Zosel, 2020; Heid et al., 2020). Older adults are at increased risk for contracting COVID-19 (lgili & Gokce Kutsal, 2020; Sibal, 2020). Additionally, the recommendations for citizens, especially older adults, are to social distance and stay at home to decrease the spread of the virus (Fuller & Huseth-Zosel, 2020; Heid et al., 2020; lgili & Gokce Kutsal, 2020; Sibal, 2020). Adhering to the recommendations to socially and physically distance can increase isolation having detrimental impacts on health and wellbeing (Fuller & HusethZosel, 2020; Heid et al., 2020; lgili & Gokce Kutsal, 2020; Sibal, 2020). However, if older adults do not follow these recommendations, they will be at an even higher risk for contracting COVID-19 (Heid et al., 2020). Due to COVID-19, most older adults are avoiding gathering with loved ones, visiting public environments, traveling, and seeking primary medical care (Heid et al., 2020). Heid et al. identified that 91% of older adults reported that the COVID-19 pandemic has presented significant challenges (Heid et al., 2020, p. 8). The most common challenges for older adults during this time are related to constraints on social interaction and impaired activity performance (Heid et al., 2020). There is an immense need to address older adults' health and wellbeing during this COVID-19 pandemic (lgili & Gokce Kutsal, 2020). The study described in this paper explores the process of creating a community-based program developed to provide occupational justice for older adults who experience occupational deprivation and marginalization when managing and maintaining health and wellbeing during the COVID-19 pandemic (Scaffa et al., 2010). Throughout recent years, researchers predicted the demographic shift of population aging (Quadagno, 2018). According to the U.S. Census Bureau (2018), researchers expect the PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 4 population of adults over the age of 65 years old will make up one-fifth of the U.S. population by 2030. Before the impacts of COVID-19, the need for community-based services was drastically increasing due to the population needs. However, with COVID-19 coinciding with the phenomenon of population aging, the need for community-based health and wellness-focused services is greater than predicted from population-based statistics alone (Leland & Elliott, 2012). The profession of occupational therapy can address the complex needs for client-centered community-based health and wellness programming and advocate for policy changes to support the needs of the older adult cohort (Arbesman, & Lieberman, 2012; Jackson et al., 1998; Marfeo, 2020). Occupational therapists provide the unique perspective of addressing health at an individual level as well as a community level with educational programming based on evidence (Marfeo, 2020). Research indicates that occupational therapists have a significant role to play in facilitating older adults performance of health management and maintenance and assisting in the realm of productive aging through promoting engagement in meaningful occupations and providing strategies to increase the quality of life (Arbesman & Lieberman, 2012; Cassidy et al., 2017; Leland & Elliott, 2012; Maeir et al., 2019). The concept of productive aging focuses on older adults' actions to maintain or improve their health, their relationships with others, and their place in society (Leland & Elliott, 2012). Health management and maintenance are occupations in the realm of instrumental activities of daily living (IADLs), and occupational therapists can act as catalysts for improving these vital IADLs (AOTA, 2014; Leland & Elliott, 2012). Evidence-based theories, frameworks, and models guide the profession of occupational therapy. The occupation-based model guiding this project is the Canadian Model of Occupational Performance (CMOP). The CMOP describes the connection between the body, mind, and spirit, with the spirit as the driving force behind an individual's occupational PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 5 performance (Cole & Tufano, 2008). The person consists of affective, cognitive, and physical aspects. The categories of occupations include self-care, leisure, and productivity (Cole and Tufano, 2008). In this theory, individuals interact with their physical, institutional, cultural, and social environments through occupational performance (Cole & Tufano, 2008). The CMOP is an occupation-based theory that supports the role of occupational therapy in providing wellness programming to older adults in a community-based setting (Clark, Blanchard, et al., 2015; Cole & Tufano, 2008). Additionally, the Lifespan frame of reference guides this project because occupational performance is dynamic throughout the lifespan. Peter Laslett developed a theory surrounding aging and divided the aging process into 4 stages: stage 1 is childhood and preparation for work, stage 2 is employment and raising ones family, stage 3 is beginning with retirement and ending with the onset of disability, and stage 4 is old age and dependence (Cole & Tufano, 2008, p. 217). Occupational therapists educate clients on lifestyle changes to delay the fourth stage of aging (Cole & Tufano, 2008). This study aims to assist older adults in postponing the loss of independence in older adulthood and maintaining health and wellness (Cole & Tufano, 2008). Delving further, the Lifestyle Redesign model encompasses the ideology of the CMOP and Lasletts theory on aging, to promote health and wellness through the medium of occupational performance for the older adult population (Clark, Blanchard, et al., 2015). The Lifestyle Redesign curriculum applies the concepts of occupational science theory, which is the systematic study of the form, function, and meaning of occupation (Clark, Wood, et al., 1998, p. 13). Occupational science concepts consider the impact of individuals client factors, environments, performance patterns, self-perceptions, and occupational storytelling associated PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 6 with transforming occupational performances (Clark, Blanchard, et al., 2015). These programs use the dynamic systems theory as a framework to interpret changes in occupational performance focused on altering performance patterns to improve occupational balance (Clark, Blanchard, et al., 2015; Jackson et al., 1998). The Lifestyle Redesign programs focus on the performance of meaningful occupations as a vital component of health and wellbeing by providing education, to older adults to enable the participants to become self-advocates for healthy lifestyle changes. The Lifestyle Redesign program provides education within individualized and group settings with personal and group goals to maintain or improve health and wellness. In the original studies that contributed to the Lifestyle Redesign model, the Well Elderly Studies took place in community settings, included in-person individual and group meetings, and led by occupational therapists (Cassidy et al., 2017; Clark, Blanchard, et al., 2015; Jackson et al., 1998). Group dynamics theories outline the importance of having peer feedback for individuals' growth and promote functional capabilities, health and quality of life (Cole, 2018; Hwang, 2010, p. 56). The international occupational therapy community recognizes the Lifestyle Redesign program for the efficacy of improving the health of older adults and preventing illness and injury (Maeir et al., 2019; Mountain, 2008). In subsequent studies, researchers further investigated the mechanisms of change in occupation-based lifestyle interventions, and researchers found that depressive symptoms have an inverse relationship to activity promotion and increased activity (Juang et al., 2018). This research finding provides evidence for the theoretical underpinnings of lifestyle-based interventions, but also suggests ways in which clinicians can optimize therapeutic changes (Juang et al., 2018, p. 360). In a recent study conducted by Cassidy et al. (2017), they studied the feasibility of interventions inspired by the Lifestyle Redesign model. The Aging Well by PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 7 Design study, inspired by the Lifestyle Redesign model, proved that a 3-month program for older adults in a health care setting was feasible (Cassidy et al., 2017). The Aging Well by Design programming and design was based on the Lifestyle Redesign model and suggested topics (Cassidy et al., 2017). The researchers found that when shorting the program to a 3-month duration (as opposed to the 9-month or 6-month duration in previous studies) and implementing the program into a healthcare setting, the program is still beneficial for older adults by building social relationships, providing community resources, and improving attitudes toward aging (Cassidy et al., 2017). Lifestyle Redesign based programs have proved to have positive impacts on various groups of older adults (ranging from independent to medically fragile) and various settings (medical, adult day programs, and community settings) (Hwang, 2010). This paper will discuss a Doctoral Capstone Experience (DCE), which advocates for senior living communities and older adults living independently throughout Franklin County, Ohio, to have access to community resources to improve the management of personal health and wellbeing during this time of dealing with the COVID-19 pandemic (Ohio State University Extension, 2021). By partnering with the Ohio State University (OSU) Extension Franklin County Office, the primary investigator created and presented Lifestyle Redesign-inspired wellness programming titled Incorporating the Seven Dimensions of Wellness into Daily Life which will be referred to as the Seven Dimensions of Wellness Programming throughout this paper. The 14-week DCE, including studying the needs of the setting and the older adult population in Franklin County, Ohio, completing 8 weeks of programming, and reviewing the results of the program, occurred on a shortened timeframe as compared to previous Lifestyle Redesign studies and the original model (Clark, Blanchard, et al., 2015; Ohio State University Extension, 2021). The Seven Dimensions of Wellness Programming provided content organized PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 8 by dimensions of wellness (including physical, emotional, intellectual, social, spiritual, environmental, and occupational) and discussed how to incorporate the dimensions of wellbeing into daily life through occupational performance (Cassidy et al., 2017; International Council on Active Aging, 2021). Research indicates that similar Lifestyle Redesign-inspired programs have proven to help remove barriers to health and wellbeing for community-dwelling older adults (Cassidy et al., 2017). The Seven Dimensions of Wellness Programming provided older adults access to enhance occupational performances by maintaining their health and wellbeing through participation in group sessions (Cassidy et al., 2017; Clark, Blanchard, et al., 2015). Participants accessed the Seven Dimensions of Wellness Programming virtually as determined by senior living communities policies and OSU Franklin County Offices policies in response to the COVID-19 pandemic (Ohio State University Extension, 2021). The setting of the OSU Extension, Franklin County Office, provides grant-funded programs for promoting older adults health and wellbeing (Ohio State University Extension, 2021). The CMOP, Lifespan frame of reference, and Lifestyle Redesign model guided the theoretical connection between health, wellbeing, and occupational performance (Cole and Tufano, 2008; Scaffa et al., 2010). The purpose of this program was to provide accessible programming inspired by the Lifestyle Redesign model to maximize the health and wellbeing of older adults during the COVID-19 pandemic. Methods Procedure The Institutional Review Board (IRB) exempted this study because all resources remained with OSU Extension and were not generalizable to other populations. Participants PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 9 demonstrated consent through their participation in providing demographic information, answering questions in the pre-assessments and post-assessments, and attending group sessions. Setting The primary investigator (Rachel Salyers), a graduate student studying occupational therapy and gerontology, implemented the Seven Dimensions of Wellness Programming virtually through the OSU Extension Franklin County Office using Zoom meetings, phone calls, and emails as the typical forms of communication. Participants of the group programming accessed the Seven Dimensions of Wellness Programming in a safe environment and adhered to the recommendations to decrease the spread of COVID-19 by using virtual communication platforms. The primary investigator and her site mentor (Loretta Sweeney), a program assistant who leads senior series community programming at the OSU Extension Franklin County Office, and a senior living community staff member worked together to host Zoom meetings for the participants (Ohio State University Extension, 2021). Program Description The design of this program was based on the design of the Well Elderly Studies and the Aging Well by Design study (Cassidy et al., 2017; Clark, Blanchard, et al., 2015; Jackson et al., 1998). For the implementation of the Seven Dimensions of Wellness Programming, the two community groups met separately for 2-hours of programming a week (broken down into 1-hour sessions twice per week), for 8 weeks (for a total of 16 sessions). The Seven Dimensions of Wellness Programming content did not include all the topics outlined by the Lifestyle Redesign model due to the limitation of time, but it included most topics (Clark, Blanchard, et al., 2015). The primary investigator organized topics from the Lifestyle Redesign model in a novel format and supplemented content with literature and online resources. Refer to Table 1 to PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 10 view the schedule and organization of the programming. The first session of the Seven Dimensions of Wellness Programming focused on introducing the program series and completing pre-assessments. The primary investigator reviewed the SF-36 and Canadian Occupational Performance Measure (COPM) pre-assessment results as part of the needs assessment, and the program curriculum incorporated the needs of the participants. Then the sessions (numbered two through 15) focused on each dimension of wellness for two sessions of each topic, including physical, emotional, intellectual, social, spiritual, environmental, and occupational wellness (more specific information is in Table 1). The program series ended with a session to focus on the conclusion of the program and completing post-assessments. Every session included the teaching of educational concepts, interactive activities, and discussion to engage the participants as outlined by Cole (2018) and described by Clark, Blanchard, et al. (2015). For every Seven Dimensions of Wellness Programming session, the primary investigator developed materials including a lesson plan, a PowerPoint presentation, informational handouts, and activity worksheets to correspond with each sessions topic (Clark, Blanchard, et al., 2015). The primary investigators site mentor reviewed the materials and then the primary investigator edited the content. All the participants received the informational handouts and the activity worksheets via email and upon request, some participants received printed copies of these materials via mail. Measures This study utilized the Qualtrics platform for the registration. The information collected from the registration included: the community they live in, the highest level of education, gender, ethnicity, race, and age. The primary investigator used the demographic information to understand the group of participants better. Additionally, the participants used Qualtrics to PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 11 complete the SF-36 Health Survey, a self-reported survey to measure health-related quality of life for the pre-assessment (taken before the program up to the date of the third program session) and the post-assessment (taken after the fifteenth session) (Clark, Blanchard, et al., 2015, p. 43; Garratt et al., 1993; Ramachandran et al., 2005). Literature about the Lifestyle Redesign model suggests using the COPM as a possible outcome measure (Clark, Blanchard, et al., 2015). So, the primary investigator used the COPM as an additional pre-assessment (taken before the program up to the date of the third program session) and post-assessment (taken after the fifteenth session) (Clark, Blanchard, et al., 2015). Research indicates the COPM has content and criterion validity and good reliability when assessing occupational performance problems in a group setting (Tuntland et al., 2016; Wressle et al., 2003). The primary investigator conducted the pre-assessments and post-assessments with COPM virtually over Zoom meetings or via phone calls with the primary investigator and individual participants. The purpose of the pre-assessments and post-assessments was to understand the impact of the Seven Dimensions of Wellness Programming. The SF-36 and the COPM were two of the outcome measures used for the University of Southern California Well Elderly Studies, which began the conceptual foundations of the Lifestyle Redesign occupational therapy model (Cassidy et al., 2017; Clark, Blanchard, et al., 2015; Jackson et al., 1998). Additionally, the primary investigator created and distributed a satisfaction survey via Qualtrics to participants after the fifteenth session. The OSU Extension Franklin County Senior Series satisfaction survey and the Lifestyle Redesign conclusions inspired the questions and the organization of the satisfaction survey used for the Seven Dimensions of Wellness Programming. Participants PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 12 The participants had to meet the standards of the inclusion criteria, which included independent older adults ages 55 years old, access to a computer or smartphone with Zoom capabilities, access to the internet, and access to Zoom. The selection of participants used convenience sampling (Taylor, 2017). The primary investigator distributed advertisements for three different communities within Franklin County, Ohio, promoted the programming, and the participants signed up through a registration link before the start of the programming. Two of the three communities presented interest for this group programming, as demonstrated by participants registering for the program online through a Qualtrics link. One community group consisted of older adults throughout Franklin County, Ohio and the other group consisted of older adults from the Worthington Senior Center community. The Franklin County group had 11 participants and the Worthington community group had 10 participants. Twenty-one participants attended at least one session, but not all participated enough for sufficient data collection. Eight participants from the Franklin County group and nine participants from the Worthington community group completed the satisfaction survey provided at the end of the programming (17 total). A total of 17 participants completed the satisfaction survey anonymously after the Seven Dimensions of Wellness Programming concluded, so the demographic information on this group is unidentified. Eight participants from the Franklin County group and seven participants from the Worthington community group completed all the pre-assessments and post-assessments (15 total) and on average attended 80% of sessions and 87% of sessions, respectively (83% for the total group). All 15 participants are women. One of the participants was in the age range of ages 55-59, 10 participants were in the age range of ages 60-75, and four in the aged over 75. Three participants identified their race as black, ten identified as white, two identified as other races. All 15 participants identified their ethnicity as PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 13 non-Hispanic. The primary investigator tracked the participants involvement in the program, including completion of the pre-assessments, program sessions, and post-assessments using Microsoft Excel. Each participants information remained confidential by tracking participation with the last four digits of their phone number without the use of identifiable information (Chiang et al., 2015; Taylor, 2017). Results Analysis The primary investigator calculated the average for each participants subscale scores for the SF-36 Health Survey and the occupational performance and satisfaction scores for the COPM for the pre-assessments and post-assessments (The Rand Corporation, 2021; Wressle et al., 2003). Next, the primary investigator calculated each participants individual change in scores, subtracting the pre-assessment scores from the post-assessment scores for the SF-36 and COPM (The Rand Corporation, 2021; Wressle et al., 2003). Then the primary investigator calculated an average change in scores, subtracting pre-assessment scores from the post-assessment scores for the SF-36 and COPM for each community group and the total participant group. The primary investigator used SPSS Software to complete a two-tailed, bi-variate, Pearson correlation between the COPM changes in occupational performances and changes in occupational satisfaction scores (Taylor, 2017). Lastly, the primary investigator analyzed the results of the satisfaction survey by calculating the participants' answers into percentages and conducting a thematic analysis for the qualitative questions (Taylor, 2017). SF-36 Health Survey Results The SF-36 Health Survey includes questions about the functional status, wellbeing, and overall evaluation of health. The eight subscales of this tool include physical functioning, social PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 14 functioning, role limitations due to physical health, role limitations due to emotional problems, emotional wellbeing, energy/fatigue, pain, and general health (The Rand Corporation, 2021). This tool measures health and wellness and uses percentages for each subscale score (the higher the score, the healthier the individual is for that subsection) (The Rand Corporation, 2021). Table 2 indicates the Franklin County group, Worthington community group, and the total group of participants average pre-assessment scores, post-assessment scores, and the change in the pre-assessment and post-assessment scores for each subscale of the SF-36 Health Survey. The Franklin County group and the Worthington community group showed decreased scores in the subscales of role limitations due to physical health and pain. Additionally, the Franklin County group showed decreased scores in the subscale of physical functioning. The Worthington community group increased scores in the subscales of physical functioning, social functioning, role limitations due to emotional problems, emotional wellbeing, energy/fatigue, and general health. The Franklin County group showed increases in the same areas as the other community group, excluding the subscale of physical functioning. COPM Results Occupational therapists conduct the COPM through interviews to determine up to five occupational problems (problems that impede occupational performance and satisfaction) (Clark, Blanchard, et al., 2015). The clients use a 10-point scale to rate their occupational performance (one: not able to perform to ten: able to perform extremely well) and satisfaction (one: not satisfied at all to ten: extremely satisfied) (Clark, Blanchard, et al., 2015). The occupational problems remained consistent for individuals pre-assessments and post-assessments or this study. According to the COPM manual a change in 2-points implies an important change but researchers found that this is not a constant value because it depends on the health of the person PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 15 or population (Tuntland et al., 2016; p. 412). The Franklin County group, the Worthington community group, and the total group of participants average change in occupational performance and satisfaction scores from the pre-assessment to the post-assessment are in Table 3. Both the Franklin County and Worthington community group participants increased in their occupational performance and occupational satisfaction scores, seven of eight and eight of nine, respectively. Both participant groups and the total group of participants showed statistically significant positive correlations between the change in occupational performance scores and the change in occupational satisfaction scores (Taylor, 2017). Satisfaction Survey Results The satisfaction survey consisted of six statements and questions with 5-point Likert scale answer choices for each and two qualitative questions. Refer to Table 4 for detailed information about the participants responses to the statements and questions answered with the 5-point Likert scale options. After the thematic analysis of the qualitative information from the satisfaction survey, the main themes emerged for the total participant group, including finding meaning in socialization, the organization of the programming, and barriers to participating in the programming. One prevalent theme included finding meaning when interacting with other group members and the presenter. According to the participants, this program provided needed social interactions and meaningful time to share personal experiences with others at a similar stage in life. One participant stated, it was most fulfilling to interact with the presenter and other participants and another participant stated that it was helpful talking to others with issues like mine. The participants found comfort in discussing similar aging experiences and connecting with others. PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 16 The second common theme identified was the organization of the Seven Dimensions of Wellness Programming. This theme included feedback stating the program duration could be shorter, the activities were beneficial, the information was one of the most influential parts of the program for many participants, and the program made participants more aware of their health. Participants suggested that the programming could benefit from a shorter duration (less than 8 weeks long). A participant stated that the new information about nutrition, exercise, changes brought on by age and suggestions to maintain and improve health and mobility was the most helpful part of the program. Another commented, the program was best when we were doing the activities together. The third theme that emerged was the challenges to participation. Most participants described that the Seven Dimensions of Wellness Programming presented no challenges, shortcomings, or disappointments and described that they enjoyed using the virtual platform. However, other participants described the challenge of navigating the technology needed for the virtual programs, the shortcoming of managing personal time to attend the sessions, and the disappointment felt by participants when they missed sessions of the program due to other obligations. One participant stated, the only challenge was that it was on Zoom, and another participant identified difficulties with internet access. Another participant stated, the only shortcomings were my own time management skills. Other participants expressed disappointment when they were unable to attend sessions; one woman stated she hated to miss a session. Discussion The participant groups results from comparing the pre-assessments to the postassessments indicate overall improved health in physical functioning, social functioning, role PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 17 limitations due to emotional problems, emotional wellbeing, energy/fatigue, general health, occupational performance, and occupational satisfaction. The most significant improvement occurred in the sub-category of role limitations due to emotional problems and emotional wellbeing. Additionally, the satisfaction survey results confirm that most participants believed they learned about community resources, learned how to continue living independently for longer, and will use this information to make health and wellness choices in the future. Based on the qualitative feedback from the satisfaction surveys, the role of socialization in the community setting and the accessibility of the virtual Seven Dimensions of Wellness Programming and informational resources were the most beneficial parts of the curriculum. However, as a total group, the health scores decreased in the sub-category of role limitations due to physical health and pain, describing negative impacts of the participants physical impairments and pain within the participants daily lives. These results may indicate that the Seven Dimensions of Wellness Programming did not meet the participants' needs in the above areas, which may decline due to fluctuating physical health and pain in the participants lives. Theoretical framework grounded the development of the Seven Dimensions of Wellness Programming. The Incorporating the Seven Dimensions of Wellness into Daily Life programming utilizes the concept of the interconnected body, mind, and spirit connection as identified in the CMOP, encourages older adults to live independently and safely for as long as possible, thus delaying Lasletts fourth age, and promotes the improvement of meaningful occupational performances as described in the Lifestyle Redesign model (Clark, Blanchard, et al., 2015; Cole & Tufano, 2008). The Seven Dimensions of Wellness Programming differs from previous studies that shaped the concepts of the Lifestyle Redesign model and found that it was feasible to adapt the Lifestyle Redesign model with a new duration and structure of PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 18 programming. The Seven Dimensions of Wellness Programming lasted 8 weeks compared to the previously studied duration of 3 months, 6 months, and 9 months (Cassidy et al., 2017; Jackson et al., 1998). Additionally, the structure of the Seven Dimensions of Wellness Programming is novel because it utilizes virtual technology to learn about health and wellness concepts, interact with other participants, and complete assessments in a new way via Zoom, Qualtrics, and email (Cassidy et al., 2017; Jackson et al., 1998). Due to the COVID-19 pandemic, communities faced the challenges of providing programming to community members in virtual formats (Vincenzo et al., 2021). More older adults have access to virtual community resources than ever before. Since the beginning of the pandemic, many older adults who have utilized technology platforms to connect with their communities show increased comfortability with virtual programming, and some even prefer virtual programming (Vincenzo et al., 2021). Despite the structural differences from previous studies, the results of this study showed improved emotional and social health and improved access to community resources which are similar findings to the previous studies implementing the Lifestyle Redesign model (Cassidy et al., 2017; Jackson et al., 1998). The fact that the Seven Dimensions of Wellness Programming addressed a comprehensive view of wellness could have helped to contribute to the participants' perceived benefits. There are various programs available for older adults which address the prevention of disease (Hartzler et al., 2018). Incorporating the Seven Dimensions of Wellness Into Daily Life programming fulfilled the needs of the older adult population who engaged in programming with the OSU Extension Franklin County Office by perpetuating comprehensive multi-dimensional wellness and integrating information into occupational performances (Hartzler et al., 2018; Zechner et al., 2019). PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 19 This study's limitations include the small sample of participants, the participant group not representative of the larger older adult population (all women, and not as diverse as the national population), and the assessment tools only capture short-term results affecting the external validity (Taylor, 2017). These limitations do not allow the findings to be generalizable to older adults outside of the OSU Extension community-based setting (Taylor, 2017). It would be beneficial for future studies to research the long-term effects of communitybased, multi-dimensional wellness programming provided to older adults using virtual platforms. To prove internal and external validity, this area of study will require further evidence about the impacts on larger populations from programs such as Incorporating the Seven Dimensions of Wellness Into Daily Life (Hartzler et al., 2018; Taylor, 2017; Zechner et al., 2019). Conclusion The purpose of this program was to provide accessible programming inspired by the Lifestyle Redesign model to maximize health and wellbeing during the COVID-19 pandemic. The results demonstrated improved occupational and general health and wellbeing but showed impaired health in role limitation due to physical health and pain. 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Retrieved from https://www.rand.org/health-care/surveys_tools/mos/36-item-shortform/scoring.html Tuntland, H., Aaslund, M. K., Langeland, E., Espehaug, B., & Kjeken, I. (2016). Psychometric properties of the Canadian Occupational Performance Measure in home-dwelling older adults. Journal of Multidisciplinary Healthcare, 9, 411423. https://doi.org/10.2147/JMDH.S113727 PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 24 U.S. Census Bureau. (2018). Older people projected to outnumber children for first time in U.S. history [Press release no. CB18-41]. Retrieved from https://www.census.gov/newsroom/press-releases/2018/cb18-41-populationprojections.html Vincenzo, J. L., Hergott, C., Schrodt, L., Rohrer, B., Brach, J., Tripken, J., Shirley, K. D., Sidelinker, J. C., & Shubert, T. E. (2021). Capitalizing on Virtual Delivery of Community Programs to Support Health and Wellbeing of Older Adults. Physical Therapy, 101(4). WorldCat.org. https://doi.org/10.1093/ptj/pzab001 Wressle, E., Lindstrand, J., Neher, M., Marcusson, J., & Hienriksson, C. (2003). The Canadian Occupational Performance Measure as an outcome measure and team tool in a day treatment programme. Disability and Rehabilitation, 25(10), 497506. https://doi.org/10.1080/0963828031000090560 Zechner MR, Pratt CW, Barrett NM, Dreker MR, & Santos S. (2019). Multi-dimensional wellness interventions for older adults with serious mental illness: A systematic literature review. Psychiatric Rehabilitation Journal, 42(4), 382393. WorldCat.org. https://doi.org/10.1037/prj0000342 PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 25 Tables Table 1: Incorporating the Seven Dimensions of Wellness Into Daily Life Session Content Dimension of Wellness Topic of Session Duration 1 Introduction Introduction of the 7 Dimensions of Wellness .5 hour 2 Physical Engaging in exercise and learning about fall prevention 1 hour 3 Physical Understanding nutritional needs and healthy meal preparation 1 hour 4 Emotional Understanding your own emotions and self-regulation 1 hour 5 Emotional Supporting mental health during COVID-19 and relating to others 1 hour 6 Intellectual Recognizing your creative abilities and expanding knowledge and skills 1 hour 7 Intellectual Health management and maintenance and navigating healthcare 1 hour 8 Social Dealing with grief and loss due to COVID-19 and learning about creative ways to connect with others 1 hour 9 Social Improving relationships with others through cultural awareness 1 hour 10 Spiritual Exploring the types of spiritual practice and mindfulness and reflective spiritual practices 1 hour 11 Spiritual Exploring nature-based and religious spiritual practices 1 hour 12 Environmental Improving safety in the home environment 1 hour 13 Environmental Improving safety in the community environment 1 hour 14 Occupational Thriving during the occupational performances of volunteering, traveling, and improving technological skills 1 hour 15 Occupational Thriving during the occupational performance of dressing, home maintenance, and rest and sleep 1 hour 16 Conclusion Conclusion of the 7 Dimensions of Wellness .5 hour Session Number PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 26 Table 2: SF-36 Health Survey Results Subscales of the SF-36 Health Survey Sub-Categories Average preassessment score (0-100) Physical functioning Franklin County Group 54.38 Worthington Community Group 55.85 Total Group of Participants 55.11 Social functioning Franklin County Group 71.88 Worthington Community Group 71.48 Total Group of Participants 71.68 Role limitations due to physical health Franklin County Group 46.88 Worthington Community Group 82.21 Total Group of Participants 64.54 Role limitations due to emotional problems Franklin County Group 41.66 Worthington Community Group 57.19 Total Group of Participants 49.43 Emotional wellbeing Franklin County Group 58.50 Worthington Community Group 60.69 Total Group of Participants 59.59 Energy/fatigue Franklin County Group 40.00 Worthington Community Group 51.50 Total Group of Participants 45.75 Pain Franklin County Group 63.44 Worthington Community Group 67.21 Total Group of Participants 65.32 General health Franklin County Group 53.13 Worthington Community Group 54.38 Total Group of Participants 53.75 Average postassessment score (0-100) Change in preassessment and post-assessment scores 50.00 75.00 62.50 -4.38 19.15 7.39 81.25 78.57 79.91 9.38 7.09 8.23 43.75 71.43 57.59 -3.13 -10.79 -6.96 75.00 80.96 77.98 33.34 23.77 28.55 68.50 73.14 70.82 10.00 12.46 11.23 50.63 62.14 56.38 10.63 10.64 10.63 60.31 65.42 62.87 -3.13 -1.79 -2.46 58.13 66.43 62.28 5.00 12.05 8.53 PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 27 Table 3: COPM Results Change in Occupational Performance Scores Franklin County Group Worthington Community Group Total Group of Participants Change in Occupational Satisfaction Scores Franklin County Group Worthington Community Group Total Group of Participants Pearson Correlation of Change in Occupational Performance and Occupational Satisfaction Scores Franklin County Group: r= 0.941* Worthington Community Group: r= 0.918* Total Group of Participants r= 0.915* *Indicates a statically significant correlation. Mean Standard Deviation N 1.0775 0.8329 0.9633 1.56631 1.03266 1.30371 8 7 15 1.5450 0.7814 1.1887 1.48284 1.05944 1.31754 8 7 15 PROVIDING LIFESTYLE REDESIGNINSPIRED PROGRAMMING 28 Table 4: Satisfaction Survey (5-point Likert Scale) Responses Responses I learned new information about this topic during this program. Franklin County Group (100%) strongly agree Worthington Community Group 77.8% strongly agree; 11.1% somewhat agree; 11.1% neither agree nor disagree Total Group of Participants 88.2% strongly agree; 5.9% somewhat agree; 5.9% neither agree nor disagree The program was enjoyable, interesting, and relevant to me. Franklin County Group 87.5% strongly agree; 12.5% somewhat agree Worthington Community Group 77.8% strongly agree; 22.2% somewhat agree Total Group of Participants 82.4% strongly agree; 11.8% somewhat agree; 5.9% neither agree nor disagree My participation and contributions were welcomed and encouraged. Franklin County Group 87.5% strongly agree; 12.5% somewhat agree Worthington Community Group 88.8% strongly agree; 11.1% somewhat agree Total Group of Participants 82.4% strongly agree; 11.8% somewhat agree I believe making healthy choices allows me to continue to live independently. Franklin County Group 87.5% strongly agree; 12.5% neither agree nor disagree Worthington Community Group 88.8% strongly agree; 11.1% neither agree nor disagree Total Group of Participants 88.2% strongly agree; 11.8% neither agree nor disagree Will use the information from this program in making health and lifestyle decisions. Franklin County Group 87.5% strongly agree; 12.5% neither agree nor disagree Worthington Community Group 66.7% strongly agree; 33.3% somewhat agree Total Group of Participants 76.5% strongly agree; 17.6% somewhat agree; 5.9% neither agree nor disagree How satisfied are you with the interactions with others? Franklin County Group 87.5% extremely satisfied; 12.5% neither satisfied nor dissatisfied Worthington Community Group 77.8% extremely satisfied; 22.2% somewhat satisfied Total Group of Participants 82.4% extremely satisfied; 11.8% somewhat satisfied; 5.9% neither satisfied nor dissatisfied Did the presenter match your expectations? Franklin County Group 62.5% far exceeded expectations; 37.5% exceeded expectations Worthington Community Group 55.6% far exceeded expectations; 33.3% exceeded expectations; 11.1% equaled expectations Total Group of Participants 58.8% far exceeded expectations; 35.3% exceeded expectations; 5.9% equaled expectations Did this program match your expectations? Franklin County Group 37.5% far exceeded expectations; 50.0% exceeded expectations; 12.5% equaled expectations Worthington Community Group 33.3% far exceeded expectations; 44.4% exceeded expectations; 22.2% equaled expectations Total Group of Participants 35.3% far exceeded expectations; 47.1% exceeded expectations; 17.6% equaled expectations N 8 9 17 8 9 17 8 9 17 8 9 17 8 9 17 8 9 17 8 9 17 8 9 17  ...

... Running Head: FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE A Need for Post-Stroke Follow-Up Procedures Following Discharge from Veteran's Affairs Medical Facilities Catherine Salo 612 Doctoral Capstone Planning Dr. Christine Kroll University of Indianapolis 1 FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 2 ABSTRACT OBJECTIVE: Of the near 800,000 strokes that occur annually, approximately 25% will become recurrent, with an increased mortality rate 2.5 times higher (Bailey, 2017). Therefore, the prevention of a recurrent stroke is of great importance. An effective follow-up system focused on secondary stroke prevention within VA facilities is needed to ensure stroke patients are provided all necessary education and resources following their discharge to reduce risk factors and improve quality of life. METHODS: To reach the goals and mission of the VA in preventing secondary strokes, a program evaluation on the current post-stroke follow-up program was developed. An examination of literature, the VA's primary follow-up methods, and data collection contributed to evaluating the VA's previous follow-up strategies. Subsequently, creating a new stroke rehabilitation plan was shaped incorporating an employee rotation schedule for conducting patient follow-up, a patient identification follow-up list, and a follow-up phone call script. RESULTS: Of the 238 stroke patients previously discharged from the Veteran's Affairs (VA) Hospital: ten of the 68 patients were pleased with their discharge experience, nine were displeased, thirteen chose not to comment, nine passed away, one was a non-veteran working at VA, 26 mailed a survey did not respond, with 170 patients not yet contacted as of 5/15/20. Currently, the VA Hospital of Indianapolis has no mandated stroke-related follow-up procedures to identify how patients are faring following their discharge. CONCLUSION: A routine follow-up system focused on secondary stroke prevention should be implemented into the VA's post-discharge policies ensuring patients receive adequate support and rehabilitation resources following their transition home, reducing the risk of secondary stroke, increase life expectancy, and overall quality of life. FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 3 INTRODUCTION Stroke Among all conditions, stroke is ranked fourth in the United States for the highest mortality rate (Esenwa & Gutierrez, 2015). In addition to its mortality, stroke is the leading cause of adult disability nationwide and is responsible for more hospitalizations of neurological diseases than any other (Damush, Myers, Anderson, Yu, Ofner, Nicholas, ... & Williams, 2016). Currently, there are an estimated 6.8 million individuals in the U.S. living with stroke, with approximately 800,000 occurring annually (Bailey, 2017). Of those near 800,000 strokes each year, about 25% or 165,000 are recurrent (Oza, Rundell, & Garcellano, 2017). Also, recurrent strokes have an increased mortality rate when initial stroke severity at discharge, age progression, smoking, diabetes, and coronary artery disease are considered (Khanevski, Bjerkreim, Novotny, Nss, Thomassen, Logallo, & NORSTROKE study group, 2019). Understanding the factors associated with stroke provides a foundation for examining the various physical, economic, and social consequences of this condition. Recurrent strokes have a higher mortality rate, are more likely to lead to a prolonged hospital stay, and often have more severe functional outcomes, therefore often having a more significant physical, social, and financial impact on the individual (Oza, Rundell, & Garcellano, 2017). Following a stroke, associated symptoms affect the contralateral or opposite sides of the body. These symptoms may include aphasia, hemiparesis, or hemianopia (Musuka, Wilton, Traboulsi, & Hill, 2015). According to researchers Bates, Choi, Duncan, Glasberg, Graham, Katz, and Zorowitz (2005), thorough and continued assessments of a patient's condition, including cognitive function, communication abilities, and physical performance, are needed to identify the individual's current abilities as a way to guide treatment and set appropriate goals. FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 4 These assessments, therefore, include follow-up protocols to assess an individual's level of functioning following their discharge from VA medical facilities. The physical, social, and economic consequences of stroke affect individuals and their families. The expense of stroke-related medical care has risen dramatically over the years and continues to increase. In 2012, the cost of stroke-related care totaled approximately $71.6 billion and rose to $184.1 billion by 2030 (Oza, Rundell, & Garcellano, 2017). In addition to physical and economic effects, social consequences occur for most stroke survivors due to disruptions of their activities of daily living (ADLs). Following a stroke, social participation and movement restrictions are not unusual. Without proper support, these disruptions can negatively affect the individual's health-related quality of life and lead to feelings of depression and hopelessness (Damush et al., 2016). Increased participation is often the primary goal created by rehabilitation professionals and stroke survivors (Svensson, Westerlind, Persson, & Sunnerhagen, 2019). Following a stroke, prevention of a recurrent stroke is of great importance. An essential strategy of any successful secondary prevention program is to identify the risk factors, reduce the risk factors, and provide necessary resources to aid in the healing process following the condition to the individual (Khanevski, Bjerkreim, Novotny, Nss, Thomassen, Logallo, & NORSTROKE, 2019). According to researchers Bates, Choi, Duncan, Glasberg, Graham, Katz, and Zorowitz (2005), a fundamental aspect of stroke recovery and rehabilitation includes Risk factor reduction as secondary stroke prevention becomes a lifelong process. Therefore, secondary stroke prevention includes follow-up procedures to assess the individual's level of function following discharge. According to Sigford (2008), implementing routine follow-up procedures ensure that patients continually receive the necessary support and resources associated with their condition FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 5 while reducing the possible isolation caused by disability. This information pertains to both the physical and emotional effects stroke may have on an individual and provides insight into caring for individuals with similar conditions more effectively. Therefore, a follow-up system focused on secondary stroke prevention should be implemented into the VA's post-discharge policies to ensure patients receive adequate support and rehabilitation resources following their transition home to increase life expectancy and overall quality of life. Mission and Goals According to the VA, their mission is to continuously strive to keep President Lincoln's promise "To care for him who shall have borne the battle, and for his widow, and his orphan." Obtaining this mission is done by endless efforts to serve and honor America's veterans. The goal of the VA is to care for veterans with integrity, commitment, advocacy, respect, and excellence while reminding VA employees that they each offer a meaningful role within the VA. By implementing a more efficient follow-up procedure, we adhere to the highest professional standards expected by the VA and our patients and their families. A more efficient follow-up system would ensure routine communication between the rehabilitation staff and patients. Maintaining regular contact with discharged patients would build rapport between patient and health professional, guarantee the patient received all necessary resources regarding their condition, and potentially reduce the likelihood of depression and loneliness. The following is an examination of literature that contributed to the design of this program. The specific aspects examined include the predictors and methods to prevent recurring strokes. Understanding this literature is foundational to designing a sustainable program. With the information provided regarding the statistics associated with recurrent stroke, the VA could FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 6 establish an effective follow-up program to increase life expectancy and overall quality of life following discharge from VA facilities. Predictors of Stroke Previous research has established the predictors of the disease, essential information for developing an effective follow-up strategy. Studies conducted at two different acute care Veterans Administration Centers by Damush and colleagues (2016) examined what effect that self-management practices would have on managing risk factors associated with stroke. Participants included were stroke survivors with additional conditions such as diabetes, hypertension, and hyperlipidemia. Researchers created a VA stroke prevention program based on up-to-date guideline practice recommendations. They found this program directly led to a reduced risk of secondary stroke by increasing adherence to medication (Damush et al., 2016). As stroke affects an increasing amount of young adults, particularly veterans, researchers Rosman et al. (2019) continued to search for predictors of the disease. They suggested that the risk of early-onset stroke significantly increased with a diagnosis of PTSD (Rosman et al., 2019). A veteran cohort of over one million young and middle-aged individuals deployed to areas of conflict, including Iraq and Afghanistan. The participants selected for the study were free of stroke at baseline and received care through the VA between October 2001 and November 2014. Individuals were observed over 13 years to inspect the consequences of PTSD on stroke. Following the evidence, researchers suggest that psychological factors may be an essential addition to preventative strategies to reduce the likelihood of stroke in young adults (Rosman et al., 2019). In addition to identifying possible predictors of stroke, researchers also hope to identify and predict the outcomes caused by stroke. After six years following a stroke, researchers found, FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 7 on average, two-thirds of individuals experience reduced participation primarily in physical capabilities (Svensson, Westerlind, Persson, & Sunnerhagen, 2019). This reduction of participation includes social activities, work, play/leisure, hobbies, activities of daily living, traveling, and involvement in sports or participation in outdoor life, displaying the most drastic reduction (Svensson, Westerlind, Persson, & Sunnerhagen, 2019). The issue includes that individuals having experienced one stroke are more likely to experience a secondary stroke. Decreased participation often leads to reduced physical fitness and higher co-morbidities. Therefore, an effective follow-up program with interventions to increase participation is necessary for individuals at risk. Opportunistic Prevention Interventions for veterans at risk for secondary stroke should include an ample amount of education on prevention. Knowledge of the warning signs and risk factors associated with stroke and recurrent stroke could increase an individual's life expectancy and overall quality of life (Saengsuwan, Suangpho, & Tiamkao, 2017). In Srinagarind and Khon Kaen Hospital, one study obtained participants from both in-patient and out-patient facilities after suffering a recurrent stroke between April and July of 2014 (Saengsuwan, Suangpho, & Tiamkao, 2017). Researchers predicted that individuals would have more knowledge about the symptoms and effects of stroke following a diagnosis. However, the study's findings revealed that even after a recurrent stroke, knowledge regarding the disease was still insufficient and unsatisfactory, with many individuals still unable to identify preventative measures. This information reaffirms the need for a follow-up system to ensure that patients diagnosed with a stroke receive all necessary education and resources following discharge from medical facilities to make changes towards a healthier lifestyle, including increased physical activity and health management. FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 8 According to research conducted by Bailey (2017), physical activity, nutrition, health management, and maintenance are necessary for medical consideration by all healthcare professionals, including occupational therapy practitioners. An ample amount of evidence suggests that incorporating information on these subjects into occupation-based interventions can increase overall functioning and performance in activities of daily living following a stroke (Bailey, 2017). Therefore, adapting and involving an effective follow-up protocol the following discharge would fall under the category of occupation-based interventions that could positively affect an individual's mortality rate and quality of life through providing education and relevant resources. Regardless of their condition, The VA has recognized that service members often require a personalized and unique service delivery model to fulfill the needs of their state. Recognizing this need, the VA developed a program known as the Polytrauma System of Care (PSC), which created long-term follow-up procedures in addition to services for individuals who were unable to return home due to the severity of their injuries (Sigford, 2008). In addition to helping alleviate the isolation one often feels following a severe disability, routine follow-up procedures are essential to ensure continuous support (Sigford, 2008). This information pertains to both the physical and emotional effects that stroke can have on an individual and provides insight into better care for these people with such conditions. In this study, the goal was to investigate how the VA currently conducts follow-up procedures of discharged patients and if those patients received the recommended information suggested by the VA's stroke coordinator. Guiding Model and Frame of Reference The occupational based model (OBM) used to guide this program included the Ecology of Human Performance (EHP). The focus of task performance within the EHP allows FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 9 practitioners to consider the patient's various areas of ADL, including work and productive activities, education, leisure/play, and social participation. The EHP is most appropriate for the program evaluation and the new program development as the focus is the role of context in task performance. Within this model, the individual is the agent of change and is the primary decision-maker. The ensures the new program is always working for the patient and changing with their needs. This model views successful functioning as the patient's ability to display various skills and manage the task requirements unique to their life roles. The frame of reference (FOR) used to guide this program evaluation included the psychodynamic FOR. The suggested FOR is most appropriate as the focus is on social participation, relationships, emotional expression, self-awareness, and defense mechanisms. The FOR views function as the ability for an individual to have self-awareness, realistic perceptions, and to use cognitive processes to reason. All of these requirements of the psychodynamic FOR are attainable through telephone interviews with patients. In addition, the evaluation process of the psychodynamic FOR focuses on the patient's thought process concerning behavior, emotion, and outcome. METHODS Research Design According to Vedung (2017), a program evaluation can aid in understanding the extent to which an intervention, or follow-up program, is currently relevant. Though program evaluations can focus efforts on various aspects, impact accountability helps the researcher identify whether the program produces the intended outcome (Vedung, 2017). In addition, program evaluations may also focus on improvement and guide future program development by refining the old program (Vedung, 2017). This strategy helps create a new program that is more effective and FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 10 focused on the patient's needs. Therefore, a program evaluation has been chosen as an appropriate research method to identify the efficacy of the VA's previous stroke follow-up strategy, knowledge patients have regarding their stroke diagnosis following discharge, and how the VA could improve its follow-up processes. Participants of Past Program Evaluation: Among the 238 stroke patients discharged from the Veteran's Affairs Medical Hospital, the VA's stroke coordinator contacted a total of 68 through a mailed survey. The distribution of these surveys occurred between the dates 04/29/2018 and 5/15/20. These 68 stroke patients had original admission dates ranging from 04/29/2018 to 09/23/2020. Both the age and sex of patients varied as specifics were not relevant to the study. The only inclusion criteria included the participant be previously diagnosed with a stroke at a Veteran's Affairs Medical Facility. New Program The researcher of the program evaluation conducted comprehensive literature searches at The University of Indianapolis Library, the Social Science Research Network (SSRN), Journal Storage (JSTOR), and other locations to understand the process of curriculum or program development, specifically for post-discharge follow-up from hospitals. Using new program development information, a nine-question survey to be administered via telephone call was developed for this study by the researcher and the VA Hospital's stroke coordinator. This survey is intended for vocal delivery during an unstructured interview process and includes general questions. The survey provides nine questions regarding the education provided to patients before discharge, who or if the patient was contacted by a member of the VA staff for a wellness check, and if the patient had access to resources in the event questions arose. The patient's open- FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 11 ended answers should be documented, grouped into like responses, and shared with the stroke coordinator. The new follow-up program would use a semi-structured interview design to ask a variety of predetermined questions. Therefore, to determine patients' knowledge regarding their condition after discharge, researchers created a semi-structured interview to identify opportunities for improvements to the Veteran's Administration follow-up processes. Face-toface encounters are ideal for delivering semi-structured interviews. However, due to social distancing restrictions following the COVID-19 pandemic, interviews should be conducted via telephone. This collection method is a semi-structured interview over the phone, allowing the opportunity to gain a large sample size with minimal expense, to produce qualitative data to improve the post-discharge follow-up of stroke survivors. These semi-structured interviews include a relatively short list of nine questions created by the researcher and VA's stroke coordinator. Face validity conducted with the VA stroke coordinator demonstrated that the questions focus on a patient's current attitudes and specific knowledge of secondary stroke risk after discharge. Future Participants According to Taylor (2017), the population sample consists of the most appropriate individuals to participate in the study. Future participants should include stroke surviving patients discharged from the Veteran's Affairs Roudebush Hospital of Indianapolis. Participants should be contacted via phone and asked if they are willing to contribute personal information in the form of a phone interview to gather data to improve follow-up procedures following discharge from VA hospitals. If the individual refused to participate, they would then be thanked FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 12 for their time and not bothered further. If the participant agreed, then the interviewer thanked him or her, and the interview continued. Debriefing After completing the interview process, the interviewer should ask participants if there are any questions, concerns, or comments left unaddressed. The interviewer should address these comments appropriately and the information recorded for further evaluation with the stroke coordinator. Participants should receive resources, including the phone number of the stroke department, and relevant information to any questions or concerns to arise in the future. The interviewer should inform participants of the importance of their participation in improving the VA Hospital's post-discharge follow-up procedures with their patients. With all of the participant's concerns addressed and needs met, the interviewer should thank them again, and the conversation concluded. RESULTS Program Evaluation of Current Stroke Follow-up Among the 238 stroke patients discharged from the Veteran's Affairs Medical Hospital, the VA's stroke coordinator contacted a total of 68 through a mailed survey. The distribution of these surveys occurred between the dates 04/29/2018 and 5/15/20. These 68 stroke patients had original admission dates ranging from 04/29/2018 to 09/23/2020. Both the age and sex of patients varied as specifics were not relevant to the study. The only inclusion criteria included the participant be previously diagnosed with a stroke at a Veteran's Affairs Medical Facility. In total, ten of the 68 patients (15%) stated they were pleased with their discharge experience from their VA facility. Nine patients (13%) were displeased with their discharge. They expressed the need for additional information about their condition, believed they were sent FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 13 home from the hospital too early, felt hurried with their educational training, expressed feelings of loneliness, detachment, and difficulty understanding the information due to cognitive effects. In addition, thirteen patients (19%) chose not to comment, nine patients (13%) passed away, one patient (2%) was a non-veteran working at VA during symptom onset, and 26 patients (38%) were mailed a survey and provided no response. Of the 238 discharged stroke patients, the VA had not yet contacted 170 (71%) of them, with the last survey was sent out on 5/15/20. Development of a Sustainable Follow-Up Procedure During the evaluation of the VA's previous follow-up procedures, the researcher noticed flaws. The data showed the rehabilitation team sent out the final survey on 5/15/20 means the stroke rehabilitation team had still not contacted patients discharged between May 2020 and May 2021. In addition, the previous survey questions used to gain information from patients needed to be adjusted to achieve the most beneficial information to the VA, rehabilitation staff, and their patients. The creation of a new survey and distribution system was needed. The following four tables identify the written survey questions mailed to stroke patients, in addition to new followup tools recommended for contacting patients more effectively in the future. These tables include a stroke rehabilitation: employee rotation schedule for patients, patient identification follow-up list, and follow-up phone call script for the interviewer. DISCUSSION Based on the program evaluation of the VA's previous follow-up procedures and research findings, follow-up strategies for stroke patients have not been effective or sustainable in the past. Therefore, the new program developed should be more effective and help the VA reach its stated goals and mission. The VA should implement a new and improved follow-up procedure for stroke patients following discharge from their facilities. A more efficient follow-up system FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 14 would ensure routine communication between the rehabilitation staff and patients. Maintaining regular contact with discharged patients would build rapport between patient and health professional, guarantee the patient received all necessary resources regarding their condition, and potentially reduce the likelihood of depression and loneliness. The Veteran's Affairs (VA) Hospital of Indianapolis has stroke-related educational modules assigned to the rehabilitation and nursing staff completed biannually. However, there are no official mandatory stroke-related follow-up procedures to identify how patients are faring following discharge from the hospital. In addition, follow-up strategies used in the past have not been effective or sustainable. To create a new and improved follow-up procedure for stroke patients following discharge from VA facilities, understanding the previous strategy and its shortcomings was necessary. Limitations This follow-up plan is beneficial as it can increase patient participation, positive response rate, and overall quality of care. However, a potential barrier that end-users might face in implementing this follow-up plan exists. The success of this plan depends on access to the stroke rehabilitation: employee rotation schedule for patient follow-up, patient identification follow-up list, and the interviewer's follow-up phone call script. Without access to these resources, the plan would founder. Access could prove difficult for individuals working in various locations throughout the hospital. A suggestion to overcome this barrier is to ensure these resources are shared electronically with all members of staff who need access in a designated and permanent location to alleviate any difficulties with finding such information. The plan suggested is available to various individuals, health care professionals, or other organizations that could benefit from and FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 15 use a simple follow-up policy. These end-users and dissemination partners, individuals, organizations, and other networks, have the opportunity to make improvements or suggestions to this easily flexible plan. Table 5 identifies the intended end-users specific to this project. These individuals and organizations are essential to the success of this follow-up plan in that they offer various levels of expertise, professional credibility, the establishment of standards, and approval of policies. CONCLUSION Implications for practice. Follow-up strategies for stroke patients discharged from the Veteran's Affairs facilities have not been effective or sustainable in the past. Therefore, a follow-up system focused on secondary stroke prevention should be implemented into the VA's post-discharge policies to ensure patients receive adequate support and rehabilitation resources following their transition home to increase life expectancy and overall quality of life. To further the success of this new plan, asking for any input or recommendations to improve the proposed project by the VA's stroke coordinator, James Baskerville, and the CTRS Program Manager, Brittany Hook, is necessary. Once the plan has been implemented and routinely used for approximately six months, the rehabilitation team could compare data collected from the new telephone follow-up procedure to the previously collected data obtained through mailed surveys. Successes would include an increase in the number of people contacted and those reporting a positive experience instead of "no comment" or "negative" statements. The stroke coordinator could routinely compare this information to past survey data obtained to ensure its efficacy. Once efficacy has been consistent, the initial end-users could assist in vouching for the program by advocating its FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 16 effectiveness to other end-user organizations, such as CARF and the VA, in hopes of establishing new standards and approving this as a new policy. FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 17 REFERENCES Bailey, R. (2017). Promoting physical activity and nutrition in people with stroke. American Journal of Occupational Therapy, 71(5), 7105360010p1-7105360010p5. Bates, B., Choi, J. Y., Duncan, P. W., Glasberg, J. J., Graham, G. D., Katz, R. C., ... & Zorowitz, R. (2005). Veterans affairs/department of defense clinical practice guideline for the management of adult stroke rehabilitation care: executive summary. Stroke, 36(9), 20492056. Damush, T., Myers, L., Anderson, J., Yu, Z., Ofner, S., Nicholas, G., ... & Williams, L. S. (2016). The effect of a locally adapted, secondary stroke risk factor self-management program on medication adherence among veterans with stroke/TIA. Translational behavioral medicine, 6(3), 457-468. Esenwa, C., & Gutierrez, J. (2015). Secondary stroke prevention: challenges and solutions. Vascular health and risk management, 11, 437. Khanevski, A. N., Bjerkreim, A. T., Novotny, V., Nss, H., Thomassen, L., Logallo, N., ... & NORSTROKE study group. (2019). Recurrent ischemic stroke: Incidence, predictors, and impact on mortality. Acta Neurologica Scandinavica, 140(1), 3-8 Musuka, T., Wilton, S., Traboulsi, M., & Hill, M. (2015). Diagnosis and management of acute ischemic stroke: speed is critical. Cmaj, 187(12), 887-893. Oza, R., Rundell, K., & Garcellano, M. (2017). Recurrent ischemic stroke: strategies for prevention. American family physician, 96(7), 436-440. Pedersen, R., Petursson, H., & Hetlevik, I. (2018). Stroke follow-up in primary care: a prospective cohort study on guideline adherence. BMC family practice, 19(1), 1-6. FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 18 Prior, P., & Suskin, N. (2018). Exercise for stroke prevention. Stroke and vascular neurology, 3(2), 59-68. Rosman, L., Sico, J., Lampert, R., Gaffey, A., Ramsey, C., Dziura, J., ... & Burg, M. (2019). Posttraumatic Stress Disorder and Risk for Stroke in Young and Middle-Aged Adults: A 13-Year Cohort Study. Stroke, 50(11), 2996-3003. Saengsuwan, J., Suangpho, P., & Tiamkao, S. (2017). Knowledge of stroke risk factors and warning signs in patients with recurrent stroke or recurrent transient ischemic attack in Thailand. Neurology research international, 2017. Sigford, B. J. (2008). To care for him who shall have borne the battle and for his widow and his orphan(Abraham Lincoln): The Department of Veterans Affairs Polytrauma System of Care. Archives of physical medicine and rehabilitation, 89(1), 160-162.) Svensson, J., Westerlind, E., Persson, H., & Sunnerhagen, K. (2019). Occupational gaps 5 years after stroke. Brain and behavior, 9(3), e01234. FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE Table 1: Written Survey Questions Mailed to Stroke Patients 1. 2. 3. 4. 5. Strongly agree Agree Not Sure Disagree Strongly Disagree 1. My questions about stroke were answered by the healthcare team. 2. I received information about stroke signs and symptoms. 3. I received information on how to lower my risk of stroke. 4. Stroke educational materials were explained to me in a way I could understand. 5. Before I left the hospital, I clearly understood my follow-up plan of care. 6.Do you have any current needs related to your stroke that we can address? 7. Do you have any other comments or suggestions for how we can improve the stroke program at this facility? 8. For your safety, do you understand how to call 911? 19 FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE Table 2: Stroke Rehabilitation Patient Follow-up Employee Rotation Schedule 20 FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE Table 3: Stroke Rehabilitation Patient Follow-up List 21 FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE Table 4: Stroke Rehabilitation Patient Follow-up Phone Call Script 22 FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE 23 FOLLOW-UP STROKE PROCEDURE FOLLOWING DISCHARGE Table 5: End Users 24  ...

... Developing, Implementing, and Evaluating a Respite Care Program: Impact on the Psychological Well-Being of Caregivers of Children with Disabilities Hanna Rose, OTS A doctoral capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Katie Polo, DHS, OTR, CLT-LANA Ally Hall, Director of Family Ministries, Noblesville First United Methodist Church Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities 2 A Doctoral Capstone Project Entitled Developing, Implementing, and Evaluating a Respite Care Program: Impact on the Psychological Well-Being of Caregivers of Children with Disabilities Submitted to the School of Occupational Therapy at the University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By: Hanna Rose, OTS Approved by: Doctoral Capstone Advisor (1st Reader) Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities 3 Developing, Implementing, and Evaluating a Respite Care Program: Impact on the Psychological Well-Being of Caregivers of Children with Disabilities Hanna Rose, OTS The University of Indianapolis Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Abstract As the number of children being diagnosed with developmental disabilities continues to increase, so do the number of caregivers caring for those individuals. Due to the increased amount of care required by children with disabilities, caregivers often sacrifice their health and well-being to ensure these individuals needs are being met (Brown et al., 1993; Earle & Heymann, 2011; Li et al., 2015). The inability of caregivers to tend to their own needs due to caregiving responsibilities creates increased caregiver stress. Caregiver stress predicts caregiver psychological well-being (Cramm & Nieboer, 2011, Dyches et al., 2016). As a result of caregivers experiencing increased stress, they are likely experiencing decreased psychological well-being (Cramm & Nieboer, 2011). Respite care services provide caregivers temporary care for their child with a disability, with the primary goal being to provide the caregivers temporary emotional, physical, and mental relief (Cowen & Reed, 2002). Through engagement in respite care services, caregivers experience decreased stress and burden, providing for increased psychological well-being (Remedios et al., 2015). The purpose of my doctoral capstone experience was to decrease caregiver burden and improve the psychological well-being of caregivers of children with mild to moderate disabilities, ages 5-18, through the development and implementation of a respite care program at Noblesville First United Methodist Church (NFUMC). 4 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities 5 Developing, Implementing, and Evaluating a Respite Care Program: Impact on the Psychological Well-Being of Caregivers of Children with Disabilities According to the Centers for Disease Control and Prevention (2019) and Zablotsky et al. (2019), approximately 1 in 6 children 3-17 years of age, or 17.8%, were diagnosed with a developmental disability between 2009 and 2017. This is a substantial increase in the overall rate of developmental disabilities, from 16.2% in 2009-2011 to 17.8% in 2015-2017 (Zablotsky et al., 2019). The increase in rate of developmental disabilities can be attributed to increases in the prevalence of attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and intellectual disabilities (ID) (Zablotsky et al.). An additional 39 million children living in the U.S. have a disability (World Health Organization, 2018). These statistics are equivalent to approximately 15% of the worlds population having a disability (World Health Organization, 2018). Of the one billion individuals impacted by a disability in todays society, between 110 million and 190 million individuals have a disability that results in difficulties functioning in daily activities (World Health Organization, 2018). Compared to previous years and decades, the number of individuals diagnosed with a disability is rising (World Health Organization, 2018). An increase in individuals diagnosed with disabilities indicates an increase in caregivers of individuals with disabilities. A study conducted by Romley et al. (2017) concluded that caregivers of individuals with disabilities are family members, typically mothers, fathers, and siblings, who provide 49.7% of the health care to individuals with disabilities. They assist the individual with a disability to ensure their basic needs, such as feeding, dressing, hygiene, and toileting, are being met. They also provide a means for transportation and opportunities for socialization and leisure. Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Caregiver burden has been analyzed in numerous studies as it relates to the elderly population. However, research related to caregiver burden is more limited when discussing the pediatric population. There are a variety of factors and predictors that relate to caregiver burden. A positive correlation exists between caregiver burden and caregiver psychological well-being and overall quality of life (Dyches et al., 2016). As a result of increased caregiver burden due to caring for a child with a disability, caregivers are at an increased risk for mental health diagnoses (Dyches et al., 2016). Romley et al. (2017) also claimed that caregivers provide 1.5 billion hours of health care services each year, instead of receiving respite care services, to 5.6 million U.S. children with disabilities. Respite care services provide temporary care to the child with a disability, with the overall goal being to provide the caregiver of the child with temporary relief (Maayan et al., 2014). Caregivers that utilize respite care services experience decreased psychological distress (Mullins et al., 2002; Dyches et al., 2016). Respite services can be provided in a variety of settings, by a variety of individuals, and over differing durations of time. Whitmore (2016) offers the example that respite care services may be provided in a church with trained and/or untrained volunteers. The purpose of this program was to decrease caregiver burden and improve the psychological well-being of caregivers of children with mild to moderate disabilities, ages 518, through the development and implementation of a respite care program at NFUMC. By being provided opportunities to engage in respite care services, one program goal was for caregivers to increase engagement in self-care tasks, including social participation, leisure exploration, and career pursuits, as well as their ability to attend to their health needs. Increased engagement in these activities could decrease caregivers burden and improve their 6 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities psychological well-being. NFUMC could benefit from a respite care program because community outreach would provide for an expansion of their special needs ministry, specifically as it relates to the pediatric population. The greater Noblesville community would benefit from the development of a respite care program because they would be provided an additional resource and service to utilize. Caregivers in Noblesville and Hamilton County would have increased access to services that improve their well-being and overall quality of life. Driving Theory and Conceptual Model To guide program development, I chose to incorporate the Canadian Model of Occupational Performance (CMOP). The CMOP is an occupation-based model that assists occupational therapists in organizing and categorizing their thoughts around occupation, thinking about complex problems, and viewing clients through the lens of the profession (Cole & Tufano, 2008). The CMOP has the human spirit at its center, which serves as an individuals primary source of motivation, self-determination, and self-will (Cole & Tufano, 2008). The human spirit component of the CMOP was critical during the development of the respite program because I needed to be mindful of what caregivers of children with disabilities believe to be their purpose in life. As a future occupational therapist, I believe my purpose in life is to help individuals with disabilities and their families have an increased quality of life. Many caregivers of children with disabilities have a similar human spirit, where they want to provide the best life for their child. In the CMOP, occupational performance is based on the interaction between the person, environment, and occupation (Cole & Tufano, 2008). Caregivers often become abundantly focused on the needs of their child, causing their 7 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities occupation component of the CMOP to be ignored (Cramm & Nieboer, 2011; Li et al., 2015). As a result of caregiving responsibilities associated with caring for a child with a disability, caregivers devote less time to personal health and self-care needs and decrease participation in leisure pursuits, relaxation, career exploration, and socialization with friends and family (Brown et al., 1993; Cramm & Nieboer, 2011; Earle & Heymann, 2011; Li et al., 2015). The person component of the CMOP is impacted, resulting in caregivers experiencing decreased physical and mental health, including stress, anxiety, worry, and fear about their childs future (Peer & Hillman, 2014). Regarding the environment component of CMOP, the development of the respite program will provide caregivers of children with disabilities an opportunity for increased social participation. By participating in informal sources of support, such as community-based respite programs at a church, caregivers are provided social support and are surrounded by a network of other caregivers they can connect with to establish supportive relationships (Murphy et al., 2006). To fully comprehend the environment component of the CMOP, it was essential for me to obtain a greater sense of each familys culture, as well as the culture of the church. I chose to incorporate the Psychodynamic frame of reference (FOR) during my DCE. The Psychodynamic (FOR) focuses on information, events, and material in an individuals unconscious mind being a significant influence on their behavior (Cole & Tufano, 2008). Function through this FOR is defined as being free of conflicts and fixations, having satisfied needs, appropriate emotional expression, and self-awareness (Cole & Tufano, 2008). The majority of caregivers of children with disabilities identify the surplus of caregiver responsibilities as being a primary cause of their stress, poor health, and decreased psychological well-being (Cramm & Nieboer, 2011). Caregivers often sacrifice their health and 8 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities psychological well-being to meet the extraordinary care needs of the individual with a disability (Brown et al., 1993; Earle & Heymann, 2011; Li et al., 2015). Caregivers typically have minimal social support and support services available to them, experience decreased leisure exploration, and have fewer career opportunities, all of which are unmet needs when viewing the scenario using the Psychodynamic FOR (Cramm & Nieboer, 2011; Li et al., 2015). The inability of caregivers to attend to personal tasks due to caregiving responsibilities creates increased caregiver stress, which decreases caregiver psychological well-being (Cramm & Nieboer, 2011). As a result, caregivers are faced with emotional and psychological conflicts, including the fear that as their health and well-being continue to decrease as a result of caregiver stress, they will be unable to meet the long-term needs of their child with a disability (Murphy et al., 2006). Caregivers may also face conflict if they have to decide to place the individual with a disability outside of the home (Kelly & Hewson, 2000; McConnell, 2015). Through participation in informal sources of support, such as a respite program, caregivers are provided with the social support they need (Murphy et al., 2006). Participation in the community-based respite program at NFUMC provides for an increase in the caregivers social support, resulting in decreased stress and improved psychological well-being (Murphy et al., 2006). Caregivers may become free of conflict because their previously experienced anxiety and stress will be reiterated and brought to the forefront of their mind due to increased self-awareness. Instead of caregivers sacrificing their health and well-being to meet the extraordinary care needs of the child with a disability, they are provided the opportunity to address and attend to their self-care and health as a result of these scheduled respite care services. In addition, through scheduled respite care services and informal sources of support, one program goal was 9 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities for caregivers to experience decreased caregiver burden, anxiety, and stress, providing for an improved psychological well-being. One way caregivers may experience this is through increased engagement in social participation, leisure exploration, and career pursuits. Literature Review Consequences of Poor Caregiver Health and Psychological Well-Being Caregiver stress predicts caregiver psychological well-being (Cramm & Nieboer, 2011; Dyches, 2016). Caregiver burden may be defined as a caregivers response to perceived stressors and negative appraisals as a result of them caring for an individual with a disability (Kim et al., 2012; Dyches et al., 2016). A childs inappropriate behavior, caregiving demands, and family circumstances, such as marital status are predictors of caregiver stress (Javalkar et al., 2017). Caregiver stress may also be predicted by multiple caregiver characteristics, such as education, employment, and caregiving duties, as well as the childs personality and behavior, demographic characteristics, and/or characteristics related to their disability (Javalkar et al., 2017). Caregiver stress includes but is not limited to the caregiver attending to the individual with a disabilitys educational, emotional, medical, behavioral, and developmental needs, while simultaneously attempting to attend to their personal needs and meeting the demands of daily life (Cramm & Nieboer, 2011; Li et al., 2015). Decreased psychological well-being for caregivers of individuals with disabilities includes anxiety, depression, worry, and fear (Peer & Hillman, 2014). As caregivers daily lives become consumed with responsibilities associated with the child with a disability, they gradually begin to feel as if they lack control over their lives and day-to-day events (Cramm & Nieboer, 2011). Caregivers of children with disabilities focus 10 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities heavily on attending to the needs of the child with a disability, allowing for less time to be devoted to their health and self-care needs (Cramm & Nieboer, 2011; Li et al., 2015). In a 2006 study by Murphy et al. that analyzed 40 caregivers feelings regarding their physical and emotional health as they care for their children with disabilities, caregivers reported barriers to addressing their own health needs, which included a lack of time, energy, and respite care service hours. Caregivers also neglected participation in leisure pursuits, relaxation, career exploration, and socialization with friends (Cramm & Nieboer, 2011; Lahaie et al., 2013). Caregivers often sacrifice their health and well-being to meet the extraordinary care needs of the child with a disability (Brown et al., 1993; Earle & Heymann, 2011; Li et al., 2015). The inability of caregivers to attend to personal tasks due to caregiving responsibilities creates increased caregiver stress, which decreases caregiver psychological well-being (Cramm & Nieboer, 2011). The current COVID-19 pandemic has introduced a variety of challenges to caregivers of children with disabilities. While the nation worries about contracting the COVID-19 virus, loss of employment, and shelters in place to reduce the spread, caregivers are faced with additional worries related to raising a child with a disability (Neece et al., 2020). Neece et al. interviewed 77 caregivers of children with intellectual and developmental disabilities about the pandemics impact on their lives as caregivers, how services have changed for their children, and their overall concerns for their children as the pandemic continues. Caregivers are expected to take on the roles of their childs educational teacher and therapist in order to continue the instructional and therapeutic programming that is now occurring virtually or completely from home (Neece et al., 2020). Caregivers expressed concern with their child lacking educational and developmental progress due to school and therapy services not 11 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities resuming and social interaction being limited (Neece et al., 2020). Approximately 48% of parents reported the greatest challenge related to the pandemic is being stuck at home and unable to leave, providing for little to no time apart from their child with a disability (Neece et al., 2020). Balancing work, caring for other children in the household that are typically developing, and lack of childcare options were reported to be the greatest challenge by approximately 17.5% of caregivers (Neece et al., 2020). In addition, caregivers reported fearing what the future may look like for their child with a disability, feeling in constant panic, and becoming bored and lonely at home (Neece et al., 2020). Being a caregiver is a naturally stressful and complex role (Crnic & Low, 2002). A 2020 study by Marchetti et al. surveyed 1,226 parents in order to identify the prevalence of parent-related exhaustion as a result of the pandemic, as well as examine associated risk and protective factors. Marchetti et al. indicated that more than 80% of caregivers experienced high levels of parenting distress and parenting-related exhaustion, with mothers showing significantly higher psychological distress than fathers. The high levels of psychological distress discovered by Marchetti et al. may be predicted by the requirement to spend a prolonged amount of time in the caregiver role due to the COVID-19 pandemic, feelings of helplessness, lower parental resilience, social isolation, having younger children, increased care demands for children, and caring for a child with a disability. Recurrent hospitalizations for children with disabilities may result as a consequence of poor caregiver health (Kelly & Hewson, 2000; Murphy et al., 2006). Caregivers of children with disabilities reported fearing that as their health and psychological well-being continue to decrease as a result of caregiver stress, their ability to meet the long-term needs of their child with a disability is jeopardized (Murphy et al., 2006). Due to caregiver stress and decreased 12 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities psychological well-being, caregivers feared they would be unable to provide adequate care to their child with a disability. As caregivers continue to have poor health, increased stress, and decreased psychological well-being, they may be faced with the unwanted decision to place their child out of the home (Bromley & Blacher, 1991; Kelly & Hewson, 2000; McConnell, 2015). According to McConnell et al. (2015), caregivers reported choosing out-of-home placement for their child with a disability as a result of stress and daily routines revolving around the child with a disability. Although interventions exist to support and enhance caregivers health and psychological well-being, caregivers claim there are not enough support services readily available, or that the services being provided are inadequate (Murphy et al., 2006). As previously mentioned, one barrier for caregivers attending to their health needs is a lack of respite care services (Murphy et al., 2006). It is also common for caregivers of children with disabilities to lack social support from friends and family members, causing them to feel isolated (Peer & Hillman, 2014; Li et al., 2015). In addition to caregiving tasks, a lack of social support and support services makes it difficult for caregivers to attend to personal health care needs or engage in desired social activities, such as socializing with friends or pursuing leisure interests (Cramm & Nieboer, 2011). Participation in informal sources of support, such as community-based respite programs or support groups, provides caregivers with social support because they know they have a network of other caregivers they can connect to and form relationships with (Murphy et al., 2006). Caregivers of children with disabilities must have stable support systems, whether it be friends, family members, professionals, or support groups, that can provide them with the support and assistance they need while caring for their child with a disability (Murphy et al., 2006). 13 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Respite Care Services Defined Maayan et al. (2014) define respite care services as temporary care provided to a child with a disability, with the primary goal being to provide caregivers with temporary relief. Respite care services may be planned or unplanned, can occur within the caregivers home or within an organization, and may be provided by trained and/or untrained staff (Maayan et al., 2014). Caregivers of individuals with disabilities rely on respite care services to provide them with quality care for their child with a disability while also providing themselves with emotional, physical, and mental relief (Cowen & Reed, 2002). Respite care includes primary or secondary services (Cowen & Reed, 2002). Primary respite care services provide relief to caregivers of the individual with a disability by allowing them time away from attending to the care demands of the individual with a disability (Cowen & Reed, 2002). Secondary respite care services focus specifically on individuals with disabilities and include educational and vocational training programs, as well as support services, such as speech, physical, and occupational therapy (Cowen & Reed, 2002). Primary respite care services are most often utilized in response to family emergencies, crises, or to allow caregivers to increase engagement in routine activities, such as personal self-care, social participation, leisure exploration, and career pursuits (Cowen & Reed, 2002). Having the opportunity to experience and engage in me time and have scheduled personal time with minimal caregiver responsibilities significantly decreases caregiver stress (Cramm & Nieboer, 2011). As engagement in respite care services reduces caregiver stress and burden, caregivers will experience increased psychological well-being (Cramm & Nieboer, 2011). Benefits of Utilizing Respite Care Services Webb (2012) sampled 125 churches to analyze the role the church plays as a support 14 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities system for individuals with disabilities and compiled multiple case studies together. Primary results indicate the need for respite care services, which assist in decreasing caregiver stress and burden (Webb, 2012). It is important for church staff and volunteers to develop close relationships with families in the congregation who have children with disabilities, because it provides those families with an additional support system (Webb, 2012). One specific church in Webbs compilation of case studies, Midtown Reformed Church, developed a volunteerbased respite care program, Special Saturdays, to support the psychological needs of caregivers of children with disabilities by providing respite services to caregivers for two hours one Saturday morning each month at the church. Siblings were invited to participate, providing caregivers a morning without any caregiving responsibilities (Webb, 2012). Besides providing relief to caregivers, the respite program, Special Saturdays, benefited the children with disabilities by offering them the opportunity to socialize and form friendships with similar peers (Webb, 2012). Growing to 20 children and approximately 30 volunteers, each child was paired with a buddy (a volunteer without a disability) and transitioned between multiple stations including music, crafts, a Bible story, and gross motor activities (Webb, 2012). The coordinator of Special Saturdays served as the churchs special needs ministry leader, and had a full-time position in the medical field (Webb, 2012). Rimmerman (1989) discussed the maternal stress levels of families with children with developmental disabilities after utilizing respite care services over 18 months. Seven families used respite care services and reported decreased levels of stress and appropriate coping strategies (Rimmerman, 1989). In comparison, 25 families did not utilize respite care services and reported increased stress and reduced coping strategies (Rimmerman, 1989). A study conducted by Jackson (2001) reported that 79% of caregivers experienced decreased levels of 15 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities stress and anxiety after utilizing respite care services. Botuck and Winsberg (1991) analyzed the effects of planned respite care services on school-aged children and adults with disabilities by evaluating changes in maternal mood, well-being, and activity patterns before, during, and after respite care services. Botuck and Winsberg determined that mothers claim to have improved psychological well-being, as determined by improved mood and decreased feelings of depression, while receiving respite care services, as opposed to before or after receiving respite care services. A study conducted by Remedios et al. (2015) examined the effects of respite care services on 58 caregivers of children with disabilities. Results indicated that caregivers participated in respite care services in order to seek relief from intense caregiving responsibilities (Remedios et al., 2015). Caregivers reported experiencing decreased fatigue and that participation in respite care services was essential to their overall well-being (Remedios et al., 2015). In addition, according to a survey conducted by the Oklahoma Respite Resource Network (2004), 98% of caregivers believe respite care services make them a better caregiver by increasing their ability to care for their child with a disability. Caregivers of individuals with disabilities need respite care services to improve their psychological well-being, health, and quality of life by reducing stress and promoting caregiver leisure and socialization. Marchetti et al. (2020) support the need for preventive programs to support caregivers during the COVID-19 pandemic. Marchetti et al.s study analyzed the psychological effects of lockdown, limited social distancing, and raising a child with a disability. Healthcare professionals ought to be made aware of the overall impact had on caregivers and childrens psychological well-being (Marchetti et al., 2020). 16 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Enhanced marital satisfaction, improved caregiver well-being, and increased opportunities for social participation amongst children with disabilities are themes that emerged from Whitmore and Snethens (2018) study that analyzed caregivers perceptions of utilizing respite care services. Caregivers often view respite care services as a gift because they are provided with hope and rejuvenation along what seems like an unending journey of caregiving responsibilities (Whitmore & Snethen, 2018). Caregivers reported that respite care services also benefit children with disabilities by providing them opportunities to socialize with others that are similar to them and that they relate to through shared experiences and health situations (Whitmore & Snethen, 2018). Through participation in respite care services, children with disabilities are no longer limited in their ability to form friendships and increase their social skills (Whitmore & Snethen, 2018). Methods Development I focused on program development when piloting a respite care program to examine changes in caregiver burden and psychological well-being of caregivers of children with disabilities, ages 5-18. The University of Indianapolis Institutional Review Board reviewed the development of this pilot program and determined it was exempt from human research. Needs Assessment I conducted needs assessments with the Associate Pastor, the Director of Student Ministries/Communications and Servant Coordinator, the Director of Family Ministries, and the Communications Specialist to identify NFUMCs current conditions and desired conditions. The Communications Specialist is a caregiver of a child with a disability. The first needs assessment occurred on-site at the church and the second occurred via Zoom. Both needs assessments 17 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities followed an interview format and consisted of approximately five questions each (see Appendix A-1 and A-2 for my needs assessments). The purpose of the needs assessments was to identify needs existing in Noblesville, Hamilton County, and the church community, including strengths and weaknesses. An additional purpose of the needs assessments was to obtain information for tailoring a program to a specific target population. The development of a respite care program designed specifically for caregivers of children with disabilities was a recurring theme by all church staff. Through the administration of multiple needs assessments, I was able to obtain valuable and comprehensive information related to the churchs culture, congregation, and current special needs ministries, which assisted in the development, implementation, and evaluation of the respite care program. The demographics of NFUMC are very similar to those of the greater Noblesville community. NFUMC has a total of 882 individuals that attend all four worship services during the week. Approximately 93% of the Noblesville community speaks English, 70.0% are homeowners, 48.75% are male, 32.26% have a bachelors degree, and 93.14% are White (U.S. Census Bureau, 2017). The average annual earning is $46,812 (U.S. Census Bureau, 2019). The overall poverty rate is 6.40% in the Noblesville community (U.S. Census Bureau, 2019). This information provided insight into the NFUMC and greater Noblesville community culture and socioeconomic status. This information was helpful when determining to whom, when, and where to advertise the respite care program. NFUMC currently has a semi-established special needs ministry, with two main community outreach groups, Sunshine Sundays and Sunshine Friends. Both of these outreach groups within the special needs ministry primarily target adults with special needs. The church has approximately five individuals involved in Sunshine Sundays, the special needs ministry on 18 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Sunday mornings. It was important to the pastoral staff and the special needs ministry that caregivers of children with disabilities, ages 5-18, be provided respite care services. Although there are already two existing special needs ministries within the church that provide services to individuals with disabilities over the age of 18, there were no special needs ministries providing services to the pediatric population and their caregivers. The pastor identified the churchs lack of a special needs ministry and outreach program that specifically targets children and their caregivers to be both a weakness and a need for the church. The pastor also emphasized the importance of bridging the gap between community members and access to services at NFUMC, such as respite care for caregivers of children with disabilities. The pastor wanted to increase community outreach to Noblesville and the greater Hamilton County community and make families of children with disabilities more aware of services that are available to them. He was aware that one other church in the Noblesville area already promoted this service to the community, and wanted to increase the quantity and quality of services provided by the churchs special needs ministry to not only its church members but also the Noblesville community and Hamilton County community. As a result of the needs assessment, the Communications Specialist identified unmet needs she was experiencing as a caregiver of a child with a disability. She identified the importance of caregivers feeling as if the individuals providing the respite services had experience and were qualified to be caring for her child. She also expressed her appreciation for having multiple opportunities in the Noblesville area to participate in respite services, where other churches hold respite nights on different nights of the months. Based on the results of the needs assessments, I developed, implemented, and evaluated two respite nights that occurred on the first Saturday evening of two consecutive months for 19 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities three hours. This pilot respite care program was designed specifically for children with mild to moderate disabilities, ages 5-18, with limited behavioral and medical concerns. Capstone Plan and Process Plan Below you will find the goals and objectives I devised for this project after completing a thorough literature review and conducting multiple needs assessments. 1. Goal: Create a respite care program for caregivers of children with mild to moderate disabilities, ages 5-18, in order to reduce caregiver stress and burden and improve caregiver psychological well-being of 80% of registered caregivers, as evidenced by a decrease in points from pre-assessment to post-assessment on the Caregiver Burden Scale. a. Objective: By March 7, 2021, at least 50% of volunteers participating in the respite program will increase their overall comfort level for interacting with children with disabilities by at least one point. b. Objective: By April 4, 2021, at least 70% of volunteers participating in the respite program will increase their overall comfort level for interacting with children with disabilities by at least one point. c. Objective: By March 7, 2021, at least 50% of caregivers of children with disabilities will decrease their score from pre-assessment to post-assessment of the Caregiver Burden Scale. 2. Goal: Create various occupational therapy activities for children with disabilities that incorporate gross motor, fine-motor, and social skills, while focusing on the specific needs and interests of the children (based on formative pre-assessment). a. Objective: By March 7, 2021, children with disabilities will use a 5-point Likert scale 20 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities to identify the activities they preferred most during the respite nights. 3. Goal: Obtain advanced skills in the areas of management, organization, fundraising, communication, community outreach, or administration through collaboration with the directors of family ministries, special needs ministry leaders, and leaders of various church departments by assisting in three projects/events from at least four church departments (Care Team, Preschool, Sunshine Friends, Teter Farm, etc.). a. Objective: By January 25, 2021, I will create an online Google Excel spreadsheet and organize it by the different ministries I am involved with at the church. I will include the advanced skill, valuable piece of information, resource, etc. I obtain from collaborating with directors of family ministries, leaders of special needs ministries, and leaders of various church departments (ex: management, organization, fundraising, communication, community outreach, administration). Process In order to assist me in designing, implementing, and evaluating this respite care program, I created a 14-week timeline that outlines my process for achieving these goals and objectives and carrying out the project (see Appendix B). The church provided me with a budget of $300 to purchase necessary materials for the two respite nights. I used a Microsoft Excel spreadsheet to organize how I was spending my allotted money on the two respite nights. See Appendix C for my Microsoft Excel spreadsheet and the budget of the two respite nights. Project Implementation Participants 21 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Through advertisement of the respite care program, 11 volunteers and 7 caregivers of children with disabilities registered for the first respite night. For the second respite night, 13 caregivers and 20 volunteers registered. Volunteers could be of any age and were not required to have previous experience interacting with individuals with disabilities. I aimed for a 1:1 ratio of volunteers to children with disabilities, but still deemed it safe and appropriate to implement the program with a 1:2 ratio. According to the churchs Safe Sanctuaries policy, all events must have a 1:12 ratio of volunteers to individuals with disabilities. Approximately four church staff members were in attendance during each of the respite nights. I contacted two large churches in Hamilton County who typically have a respite program for individuals with disabilities. I was unable to connect with one church but collaborated with the Special Needs Ministry Director of the other church and identified the consistent date and time in which their church holds their monthly respite program. I chose to schedule NFUMCs respite nights on the first Saturday of each month so it did not conflict with the other churchs respite program, providing caregivers at least two opportunities to participate in respite services each month instead of just one. However, due to COVID-19, the other church decided to temporarily stop their respite program until their church gave further notice. Throughout my entire development, implementation, and evaluation process for the respite program, the other church did not hold a single respite night. Their Special Needs Ministry Director reported it had been over a year since their respite program had been functioning due to the pandemic. I advertised the respite care program through the churchs social media platforms, the lead pastors weekly video announcements to the church congregation, weekly emails sent to the entire church congregation, and weekly announcements made during Sunday church services. I collaborated with the churchs Communication Specialist and provided her with graphics and a 22 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities detailed description of the respite nights so she could email the entire church congregation and create a page for the church website. Individuals who were interested in registering for the respite nights as participants or volunteers could visit the church website to learn more information or access the registration link (See Appendix D). I also collaborated with the churchs Media Specialist and provided her with graphics and a detailed description of the respite night so she could advertise the respite nights weekly on the churchs social media platforms. During five Sunday mornings, I stood in front of the congregation and promoted the two respite nights. I also advertised by passing out and posting self-created flyers in various locations throughout the Noblesville community, such as coffee shops, restaurants, toy stores, and libraries (see Appendix E for the flyer). I emailed teachers at the local school cooperation, where young adults and students may be passionate about pursuing a career related to providing services to children with disabilities. Emails were also sent to organizations involved with children with disabilities, such as the Hamilton County Special Olympics, the Boys and Girls Club, pediatric occupational and physical therapy companies, and applied behavioral analysis clinics. In order to keep track of the organizations and individuals I had contacted and planned to contact, I created a Microsoft Excel spreadsheet and listed their contact information. Two local newspapers interviewed me and the respite program was featured in two separate newspaper columns, which provided for additional advertising (see Figures 1 and 2 of Appendix F). Promotions for the respite care program were also sent to various caregiver support groups within Facebook. Volunteers and caregivers registered for the respite care program on the church website. I used Microsoft Word to create two separate registration forms, one for volunteers and one for caregivers and their child(ren). I modeled my volunteer registration form after the churchs pre- 23 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities 24 existing volunteer registration form and included additional information that was specific to the respite nights. I also incorporated information from a form that the Special Needs Ministry Director from the other church in the county who was once holding respite nights provided me with when I met with him. Volunteers were required to provide information such as basic medical and personal information, their comfort levels interacting with children with disabilities in various scenarios, past experience related to interacting with children with disabilities, and whether they could attend the mandatory volunteer training session(s) (See Figures 1 and 2 of Appendix G). Volunteers were also required to complete a background check. Caregivers were required to provide information such as basic personal and medical information for their child with a disability including disability type, behavioral and/or medical concerns, communication and ambulation techniques, sensory processing concerns, dietary restrictions, etc (see Figure 3 of Appendix G). Caregivers also provided information related to their childs interests and likes, including specific activities. I collaborated with the Communication Specialist, who converted the registration forms into an online format and uploaded them to the respite page on the church website. Individuals accessed these registration forms online and registered for the respite nights as a volunteer or registered as a participant. I set a registration deadline for approximately two weeks prior to each respite night to ensure I had enough time to appropriately match children with volunteers. I also needed to ensure I was planning activities and stations that were of interest to the children. I allowed minimal flexibility with the deadline, especially with the volunteers, because I did not want to turn down help. During both respite nights, I had a greater number of volunteers than children, so if a caregiver registered past the registration deadline, I had flexibility in numbers. I did not turn down any caregivers who wanted to utilize the respite care service, because I recognized there to Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities be a great need for this service in the community. A registration deadline would ensure I was keeping the children and volunteers safe and abiding by the 1:1 or 1:2 ratio guidelines I set forth at the beginning of the project. Project Components Using information from the volunteer and caregiver registration forms, I strategically matched each volunteer with one or two children with a disability. Matches were made based on volunteers comfort levels interacting with children with disabilities and the childrens individual medical, behavioral, communicative, and sensory needs. Prior to each respite night, I held a mandatory training session to educate volunteers on various disability types, behavior management strategies, sensory processing information, and communication techniques when interacting with children with disabilities. The first volunteer training session occurred via Zoom due to the church not being fully reopened as a result of COVID-19. With permission from all volunteers in attendance, I recorded the first volunteer training session that was held via Zoom. I emailed the recorded training video to the churchs Media Specialist who edited the video and posted it on the church website and the churchs YouTube channel (see Figure 1 of Appendix H for a link to the first volunteer training session video). The purpose of posting this recorded video on the churchs website and YouTube channel is for volunteers who are unable to attend future in-person training sessions to be able to refer to the training video for content knowledge related to interacting with children with disabilities. As previously mentioned, I had volunteers register the registration deadlines and volunteer training sessions had already passed. In order for these volunteers to be appropriately trained and to ensure the safety of all individuals involved during the respite nights, I referred them to the YouTube video. Individuals were required to email me and confirm they had watched the training video 25 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities prior to attending the respite night. The second volunteer training session occurred in-person at the church with COVID19 precautions and guidelines being followed. The second volunteer training session covered very similar content as the first volunteer training session. However, I incorporated additional content related to epilepsy and seizure first-aid, manual wheelchair use, and toileting, as there were children registered for the second respite night that had these specific needs. Similar to the first volunteer training session, the second volunteer training session was recorded and converted to a video and posted on the churchs website and YouTube channel (see Figure 2 of Appendix H). Both training sessions took place on a Tuesday evening from 7-9 p.m., approximately a week and a half prior to each respite night. I took attendance during both sessions and asked volunteers if they needed childcare to be available during the in-person training session. Zero volunteers requested childcare to be available. These volunteer training sessions also covered COVID-19 precautions and guidelines and previewed the respite nights schedule of events. Each volunteer was provided a cheat sheet of basic information related to the child(ren) they were specifically matched up with and a schedule for the respite night, including a list of activities and stations. See Appendix I for an example of a cheat sheet that was provided to volunteers. A brief overview of the churchs Safe Sanctuaries training was provided to educate volunteers on abuse and appropriate response methods. During the in-person training session, volunteers toured the church to increase familiarity and comfort with the rooms that would be utilized during the respite night. For the training session that was held via Zoom, volunteers arrived 30 minutes early on the first respite night to receive the tour due to being unable to physically receive the tour on the night of the training session. 26 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities I created an infographic and developed an educational video for caregivers of children with disabilities discussing the importance of participating in respite care services, how respite care services can benefit them as caregivers, and the importance of incorporating respite care services into a monthly routine to establish healthy habits (see Appendix J, Figures 1 and 2). I also provided caregivers with statistics on children with disabilities and respite care services. Through the development of this video, I wanted to increase the caregivers comfort levels of sending their child to participate in the respite program by explaining exactly what the night would entail and providing explicit details of the event. This video was created through collaboration with the churchs Media Specialist. Approximately one and a half weeks prior to each respite night, I emailed the video to all caregivers who had registered for the respite night. The video was approximately ten minutes in length and was posted on the churchs YouTube channel. Based on information I received through collaboration with caregivers and after analyzing the caregivers registration forms, I created various stations for the children to engage in during the respite nights. These stations incorporated fine-motor, gross motor, and social skills. The stations for each respite night were very similar. However, during the second respite night, I had a child with a manual wheelchair that I needed to ensure was able to participate in all of the stations and had equal access to materials and equipment. The weather was also nice outside, so I incorporated an outdoor playground station for the children to go outside in groups of two or three for approximately 15 minutes at a time. In order to ensure I had all of the necessary materials, supplies, and equipment needed for the stations, I created a list of the each station and listed individual items I would need for each station. I collaborated with the Preschool Director who provided me with a tour of the preschool facilities and all the 27 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities materials, supplies, and equipment I would be able to access during the respite nights. I created a list of the items I wanted to utilize during the respite nights and emailed this list to the Preschool Director one week prior to each respite night. I was provided access to the majority of the activities, equipment, and materials one day before each respite night and began setting up the stations. I also utilized church resources, such as crate paper, the copy machine, printer, paper shredder, paper cutter, and laminator to create an abundance of activities, signs for stations, and resources for volunteers. As previously mentioned, the church provided me with a budget of $300 to purchase necessary materials for the two planned respite nights. The equipment and materials that I was unable to use from the church, I purchased using money from my allotted $300. Once the registration deadline for each respite night had passed, I purchased the number of necessary food items using money from my allotted $300. I also used money from the budget to purchase extra clothing items for children that needed assistance with toileting. Examples of clothing items I purchased include mens sweatpants, boys sweatpants and shorts, and girls sweatpants. Materials, supplies, and equipment needed for all the stations were stored in one specific location in the church. I also collaborated with the maintenance supervisor the week prior to each respite night by providing him a visual diagram of the main rooms floor layout, including the number of tables and chairs, location of tables and chairs, and location of the stations. The Preschool Director provided me with the supplies, materials, and equipment and the maintenance supervisor had all the tables and chairs set up the day before each respite night, so I began setting up the stations and activities. The week leading up to each respite night, I collaborated with the Media Specialist and completed a final walk-through of the sound booth 28 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities to practice streaming and projecting the movie, adjusting the volume, and utilizing the microphone. Approximately two days prior to each respite night, I emailed all the volunteers a list of final reminders and general responsibilities for the event (see Appendix K). Prior to the first respite night, the volunteers arrived at 5:30 p.m. in order to sign-in, receive their name tag and Ziploc bag filled with Clorox disinfecting wipes, and receive their necessary paperwork for the evening, which included their cheat sheet(s) for the child(ren) they had been matched with and an updated schedule for the evening, including a list of the stations and activities. Volunteers also signed a document indicating they had completed the Safe Sanctuaries training via the Zoom training session. The volunteers also received a tour of the rooms that were going to be utilized during the respite night. During the second respite night, volunteers arrived at 5:40 p.m. Although I did not need to provide volunteers with a tour on the second respite night, I wanted adequate time for volunteers to sign-in and receive their necessary items for the evening, and ensure everyone was prepared in case caregivers began to arrive early with children. Although I set a registration deadline, and even had a few volunteers and caregivers register after the deadline, I was still prepared for caregivers to arrive on the day of the respite night and want their child to participate in the event. If this situation were to occur, my plan was for a few volunteers who were running stations and assisting with cleaning to match up with these children. Other volunteers who were assisting with cleaning and running stations would have to take over those volunteers responsibilities. During each respite night, caregivers dropped their child off at the church and were provided with respite care from 6-9 p.m. The first respite night was Superhero Night and the second respite night was Hawaiian Night. The decorations, movie selection, activities 29 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities and station props, and freebies for the respite nights coordinated with each theme. Each child received a nametag that contained colored stickers that indicated any specific dietary, behavior, or medical needs they may have. See Appendix L for a key that indicates what each colored sticker indicated. The colored stickers were beneficial because they allowed any volunteer to quickly glance at a child and be able to identify if the child had a specific need that required extra attention and care. During the first 75 minutes of the respite night, children and their assigned volunteer rotated freely from various stations and activities. Volunteers who were not assigned to specific children with disabilities assisted with cleaning of equipment at stations, moving tables and chairs during transition periods, and ran stations to increase engagement with the children. See Figure 1 of Appendix M for a schedule of the first respite night and Figure 2 of Appendix M for a schedule of the second respite night, with each including a list of the activities and stations. Throughout the respite night, children had access to a sensory room that consisted of sensory bins, yoga balls, a swing, bean bags chairs, rocking chairs, and a detached padded room to help self-regulate their behaviors as a result from excess external stimuli. Children also had access to sensory equipment, including headphones, chew tools, fidget spinners, and wiggle seats. COVID-19 guidelines and precautions were followed at all times during the respite nights. In order to ensure everyone was abiding by one specific Safe Sanctuaries guideline that requires there to be two unrelated, non-cohabitating adults in the same room with a child at all times, whenever a child needed to use the restroom, I assigned two specific volunteers to assist with this task. I encouraged all volunteers to regularly ask the child(ren) they were matched with if they needed to use the restroom. If a child needed to use the restroom, the 30 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities volunteer that was matched with that child was directed to find one of the two volunteers that had been assigned to assist with the restroom, and take the child to the restroom. The volunteer would assist the child with any necessary steps of toileting and dressing while the assigned volunteer stood halfway in the door and kept the door halfway open, making sure they could hear everything that was being said. Whenever a child needed to utilize the sensory room, or if a volunteer believed a child would benefit from the sensory room, I assigned two specific volunteers that had previous experience related to children with sensory concerns the responsibility of ensuring they were in the sensory room with the other children and volunteers. If a volunteer wanted to utilize the sensory room, they came and told me, and then I told the volunteers that I specifically wanted to go into the sensory room with the other volunteer and child. Together, they would all go into the sensory room. I wanted to maximize my use of volunteers, so the assigned volunteers only went to the sensory room whenever a child or volunteer felt as if the child needed to utilize it. Otherwise, the volunteers acted as floaters and assisted with cleaning and running various stations in the large room. During the second respite night, instead of having two volunteers go into the sensory room with the volunteer and child, I had one volunteer go into the sensory room with them. Caregivers were encouraged to provide a meal for their child in order to reduce the amount of food handling that occurred by volunteers. Pre-packaged and individually wrapped snack items were provided to all children; however, I knew many children would still be hungry. Snack items consisted of gluten-free and regular pretzels, gluten and dairy free popcorn, string cheese, and applesauce. Dietary restrictions were followed. While the children and volunteers ate, a movie played on the projector screen. After approximately 20 minutes of 31 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities eating, children had the option of continuing to sit at their table to watch the movie, or move to the floor to continue watching the movie. During the first respite night, the children and volunteers watched a movie that was approximately 70 minutes in duration. During the second respite night, the children and volunteers watched a thirty-minute movie. With the shorter movie, children had the opportunity to rotate from various stations for an additional thirty minutes after the snack and before watching the movie. I purposefully chose to end each respite night with the children watching the movie in order to promote calming behavior prior to caregiver arrival. Approximately twenty minutes before dismissal, volunteers assisted the children in completing an exit survey, where the children rated their level of enjoyment of the various stations and activities, identified aspects they liked and disked about the evening, and indicated if they would return to future respite nights. The volunteers also completed their own exit survey and identified their comfort levels with various scenarios related to interacting with children with disabilities, provided feedback on the training session and the respite night, and indicated if they would return to future respite nights. During the second respite night, I also had the volunteers and children complete the survey 15 minutes earlier than the first respite night in order to ensure everybody had the chance to complete the form. The week following each respite night, I sent a thank-you card to the all the volunteers, thanking them for helping during the event. Along with the formative postassessment and summative assessment, the week following each respite night, I also sent an email to all the caregivers, providing them pictures of their child during the respite night. Program Evaluation 32 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities 33 I collected data from two stakeholders, the volunteers and the caregivers, in order to inform successes of the respite care program. Volunteers completed a formative pre- and postassessment related to their comfort levels and knowledge with interacting with children with disabilities, such as changing a diaper and assisting with toileting, feeding a child, etc. Volunteers completed the pre-assessment as part of their registration form for each respite night and completed the post-assessment after participating in the mandatory volunteer training session and respite night. Volunteers who participated in both respite nights completed only one preassessment during the time of registration and completed two post-assessments, each occurring at the end of the two respite nights. Volunteers completed the formative post-assessments by filling out a printed document. This was earlier referred to as the exit survey that the volunteers completed at the end of each respite night. See Figure 1 of Appendix G for the formative pre-assessment and Appendix N for the formative post-assessment for volunteers. I used Qualtrics to create an online questionnaire of the Caregiver Burden Scale for the caregivers formative assessment (Zarit et al., 1980). The Caregiver Burden Scale is a selfadministered questionnaire used to assess perceived burden among individuals caring for other individuals with disabilities (Zarit et al., 1980). For each caregiver that registered, I emailed them a link to the Qualtrics Caregiver Burden Scale questionnaire, along with instructions, the purpose of the questionnaire, and additional background information (see Appendix O). The Caregiver Burden Scale consists of 22 questions and takes approximately 20 to 30 minutes to complete (Rehabilitation Measures, 2021). Caregivers completed this questionnaire prior to participation in their first respite night. Within 72 hours of participating in the respite nights, I emailed each caregiver a link to the Caregiver Burden Scale (Zarit et al., 1980) and instructed caregivers to complete the questionnaire a final time. The caregivers completed a summative assessment after Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities 34 participating in respite nights. Questions related to whether or not caregivers believed they would benefit from continued participation in respite care services, as well as whether or not they would participate in an additional group for caregivers of children with disabilities, offering educational sessions on how to develop healthy respite habits and routines. These questions were included within the Caregiver Burden Scale in a yes/no format. The data received from the caregivers completion of the questionnaire after participating in the respite nights served as formative postassessment and provided me with information on how participation in respite care services impacts their caregiver burden and psychological well-being. The data also provided valuable information on how the respite care program can continue to grow and develop in the future. See Figure 3 of Appendix N for the formative pre- and post-assessment, and Appendix P for the summative assessment for the caregivers. In order to collect data related to the respite care program, which would be used to inform changes to the program, I created a formative post-assessment for the volunteers. Questions on this post-assessment related to the volunteers perspective on whether they had adequate training to be successful (safe, comfortable, etc.) during the respite nights. These questions were combined with the previously mentioned formative post-assessment for volunteers to form a single document created on Microsoft Word. Volunteers who participated in both respite nights completed two post-assessments, each occurring at the end of the two respite nights. Volunteers completed the formative post-assessments by filling out a single printed document. I also created a formative pre- and post-assessment for the caregivers and their child with a disability. The pre-assessment was administered as part of the caregiver registration form that caregivers completed online. When registering their child, caregivers were asked to identify activities their child enjoyed. Approximately 20 minutes before leaving each respite night, the Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities volunteers administered the formative post-assessment to each child. This assessment consisted of questions on a document created via Microsoft Word, surveying the child on the successes of the respite night, asking the child to rate their enjoyment level of activities using a 5-point Likert Scale, and to identify if they would return to future respite nights. This was earlier referred to as the exit survey that the volunteers assisted the child with completing at the end of each respite night. See Figure 2 of Appendix N for the formative post-assessment for the children. Program Results Microsoft Excel spreadsheets were created and utilized to track pre- and postassessment data for volunteers, caregivers, and children with disabilities for each of the two respite nights. Respite Nights Caregivers, Volunteers, and Children Caregivers Although seven children participated in the first respite night, one caregiver did not complete the pre-assessment and one caregiver had two children that participated, with one child having a disability and the other child being a sibling that was neurotypical. Caregiver burden was measured using Zarit et al.s (1980) Caregiver Burden Scale. The minimum clinically important difference for the Caregiver Burden Scale by Zarit et al. (1980) is five points (Fekete, 2017). When analyzing the formative pre- and post-assessment data using the Caregiver Burden Scale (Zarit et al., 1980), and the summative assessment data of the caregivers, I quickly noticed that prior to the first respite night, 80% of caregivers experienced Moderate to Severe caregiver burden. After the first respite night, only one caregiver experienced a decrease in caregiver burden, where their pre-assessment score on Zarit et al.s (1980) Caregiver Burden Scale decreased by 10 points, which is significant. Prior to participating in the first respite night, 35 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities this caregiver fell into the Moderate to Severe burden category. However, after participating in the first respite night, they dropped down one burden category to Mild to Moderate. As a group, the five caregivers average caregiver burden increased when comparing their scores prior to and after participating in the first respite night. However, the increase in scores was not significant because it was less than five points (Fekete, 2017). As a group, the five caregivers had an average pre-assessment mean score of 41.80 prior to the first respite night, placing them in the burden category of Moderate to Severe. After participating in the first respite night, the caregivers had an average post-assessment mean score of 46.00, placing them in the burden category of Moderate to Severe. The caregivers positive verbal feedback when picking up their children at the end of the first respite night, along with their feedback on the summative assessments, did not align with the data on the formative post-assessments. All caregivers reported they benefited from the first respite night and would participate in future respite nights. This information is discussed in detail in the Discussion section of the paper. See Table 1 below for detailed information of each caregivers burden levels prior to and after participating in the first respite night. Table 1 First Respite Night Caregiver Burden First Respite Night Caregiver Burden PrePostPre-Burden Category Post-Burden Category Assessment Assessment Mean Score Mean Score 43.00 59.00* Moderate to Severe Moderate to Severe 1 45.00 35.00* Moderate to Severe Mild to Moderate 2 42.00 51.00* Moderate to Severe Moderate to Severe 3 36.00 37.00 Mild to Moderate Mild to Moderate 4 43.00 48.00* Moderate to Severe Moderate to Severe 5 Note. Comparison of the amount of caregiver burden experienced by each caregiver prior to and after participating in the first respite night, as measured by Zarit et al.s (1980) Caregiver Burden Scale. Caregiver 36 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities * = clinically significant, MCID = 5 points (Fekete, 2017). Highlighted data indicates a change in burden category. Table 2 First Respite Night Caregiver Burden Group Average First Respite Night Caregiver Burden Group Average Average Pre-Assessment Average PostAverage Pre Average Post Mean Score Assessment Mean Score Burden Category Burden Category 41.80 46.00 Moderate to Severe Moderate to Severe Note. Comparison of the average amount of caregiver burden experienced by caregivers prior to and after participating in the first respite night, as measured by Zarit et al.s (1980) Caregiver Burden Scale. I initially had sixteen children and thirteen caregivers register to participate in the second respite night. However, two caregivers had to cancel due to COVID-19 and five caregivers had to cancel due to changes in Easter plans and/or Spring break. Six caregivers and eight children participated in the second respite night, with all caregivers completing the formative preassessment and five caregivers completing the formative post- and summative assessments. The caregiver that initially registered their child with a disability who was planning to be in a manual wheelchair the entire duration of the second respite night did not participate in the event. Two caregivers had two children each participate, with one child having a disability and the other child being a sibling that was neurotypical. Using the Caregiver Burden Scale on both the formative pre- and post-assessments, as well as the summative assessment, I discovered that prior to the second respite night, 17% of caregivers experienced Severe caregiver burden, 50% of caregivers experienced Moderate to Severe caregiver burden, and 33% of caregivers experienced Mild to Moderate caregiver burden (Zarit et al., 1980). Two caregivers that participated in the second respite night also participated in the first respite night. After participating in both respite nights, one caregiver experienced an increase in caregiver burden from 35.00 to 38.00 using Zarit et al.s Caregiver Burden Scale, which is not significant because 37 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities it is less than 5 points (Fekete, 2017). The other caregiver did not experience a change in caregiver burden and remained at 48.00 on Zarit et al.s Caregiver Burden Scale. After the second respite night, three caregivers experienced a decrease in caregiver burden, where their pre-assessment score on Zarit et al.s (1980) Caregiver Burden Scale decreased. Two caregivers experienced a significant decrease in caregiver burden, where their scores on Zarits Caregiver Burden Scale decreased by at least 5 points (Fekete, 2017). These two caregivers also experienced changes in their burden category (Zarit et al., 1980). Prior to participating in the second respite night, one caregiver fell into the Moderate to Severe burden category and the other caregiver fell into the Severe burden category. However, after participating in the second respite night, one caregiver dropped down one burden category to Mild to Moderate and the other dropped to Moderate to Severe. As a group, the five caregivers had an average pre-assessment mean score of 47.00 prior to the second respite night, placing them in the burden category of Moderate to Severe. After participating in the second respite night, the caregivers had an average post-assessment mean score of 45.20, placing them in the burden category of Moderate to Severe. The caregivers positive verbal feedback when picking up their children at the end of the second respite night, along with their feedback on the summative assessments, partially align with the data on the formative post-assessments. All caregivers reported they benefited from the second respite night and would participate in future respite nights. This information is discussed in detail in the Discussion section of the paper. 38 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Table 3 Second Respite Night Caregiver Burden Second Respite Night Caregiver Burden Caregiver PrePostPre-Burden Category Post-Burden Category Assessment Assessment Mean Score Mean Score 45.00 38.00* Moderate to Severe Mild to Moderate 1 43.00 48.00* Moderate to Severe Moderate to Severe 2 42.00 48.00* Moderate to Severe Moderate to Severe 3 39.00 36.00 Mild to Moderate Mild to Moderate 4 66.00 56.00* Severe Moderate to Severe 5 Note. Comparison of the amount of caregiver burden experienced by each caregiver prior to and after participating in the second respite night, as measured by Zarit et al.s (1980) Caregiver Burden Scale. * = clinically significant, MCID = 5 points (Fekete, 2017). Highlighted data indicates a change in burden category. Table 4 Second Respite Night Caregiver Burden Group Average Second Respite Night Caregiver Burden Group Average Average Pre-Assessment Average PostAverage Pre Average Post Mean Score Assessment Mean Score Burden Category Burden Category 47.00 45.20 Moderate to Severe Moderate to Severe Note. Comparison of the average amount of caregiver burden experienced by caregivers prior to and after participating in the second respite night, as measured by Zarit et al.s (1980) Caregiver Burden Scale. Volunteers A total of 11 volunteers participated during the first respite night. Out of the 11 volunteers, 7 of them attended the Zoom training session. The other 4 volunteers were either unable to attend the session or registered past the registration and training session deadline and were required to watch the recorded video of the training session on the churchs YouTube channel. 39 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities I analyzed the 11 volunteers formative pre- and post-assessment data from the first respite night to compare their comfort levels in each category using a 5-point Likert Scale for comfort (see Table 5 below). Table 5 Volunteers Change Score Post First Respite Night and Training Session Volunteers Change Score Post First Respite Night and Training Session Change in Changing Slobber/ Redirecting Assisting Addressing Overall Score Diaper/ Drooling Child Who Child Challenging Comfort (Using 5Assisting is Refusing with Behaviors Level point with Feeding Likert Toileting Scale for Comfort) 0 10 8 9 7 6 8 1 1 2 1 4 3 3 2 0 1 1 0 2 0 Note. The number of volunteers who experienced each change in score using a 5-point Likert Scale for comfort when comparing the 11 volunteers formative pre- and post-assessment data from the first respite night for each category. Using a 5-point Likert Scale, the 11 volunteers had an average overall comfort level of 4.0 prior to attending the training session and participating in the first respite night. After attending the training session and participating in the first respite night, volunteers had an average overall comfort level of 4.3, using a 5-point Likert Scale. None of the volunteers indicated they required additional training or education in order to be successful or feel more comfortable in future respite nights. All of the volunteers indicated they would be interested in volunteering again for future respite nights. Six of the volunteers signed up to participate in the second respite night. The other volunteers reported that the primary conflict was that the second respite night was the same weekend as Easter and they had prior commitments with family. 40 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities When analyzing the volunteers formative post-assessment data, which was completed at the end of the first respite night, a few themes that emerged were reducing the film length, increasing the length of time to engage in activities and stations, and having more physical activity stations. This feedback was consistent with the feedback on the childrens formative post-assessments. One volunteer recommended I also place balloons or a sign outside the door I wanted caregivers to drop off their child at, in order to more clearly indicate to caregivers where they were supposed to enter. I implemented these changes during the second respite night. A total of 20 volunteers initially registered for the second respite night. One volunteer cancelled their registration due to changes in Easter plans one day prior to the second respite night. On the day of the second respite night, five additional volunteers did not participate due to their child no longer being able to participate in the second respite night due to changes in Easter plans and/or sickness. A total of 14 volunteers participated in the second respite night. Out of the 14 volunteers, 12 of them attended the in-person training session. The other two volunteers were unable to attend the session and were required to watch the recorded video of the training session on the churchs YouTube channel. I analyzed the 14 volunteers formative pre- and post-assessment data from the second respite night to compare their comfort levels in each category using a 5-point Likert Scale for comfort (see Table 6 below). 41 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Table 6 Volunteers Change Score Post Second Respite Night and Training Session Volunteers Change Score Post Second Respite Night and Training Session Change in Changing Slobber/ Redirecting Assisting Addressing Overall Score Diaper/ Drooling Child Who Child Challenging Comfort (Using 5Assisting is Refusing with Behaviors Level point with Feeding Likert Toileting Scale for Comfort) -2 1 1 0 0 0 0 -1 1 2 1 3 1 1 0 8 7 8 7 7 8 1 2 2 2 3 2 4 2 0 2 3 1 3 0 3 1 0 0 0 1 1 4 1 0 0 0 0 0 Note. The number of volunteers who experienced each change in score using a 5-point Likert Scale for comfort when comparing the 14 volunteers formative pre- and post-assessment data from the second respite night for each category. Using a 5-point Likert Scale, the 14 volunteers had an average overall comfort level of 3.9 prior to attending the training session and participating in the second respite night. After attending the training session and participating in the second respite night, volunteers had an average overall comfort level of 4.4, using a 5-point Likert Scale. One volunteer indicated they required additional training or education, specifically as it related to assisting a child with transitioning to different activities, in order to be successful or feel more comfortable in future respite nights. All of the volunteers indicated they would be interested in volunteering again for future respite nights. When analyzing the volunteers formative post-assessment data, which was 42 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities completed at the end of the second respite night, there was not any feedback regarding program development. Common themes that emerged from the data were that the respite night was very organized, and the training session was thorough and made the volunteers feel well prepared. I combined all volunteers from the first and second respite night, which provided for a total of 21 volunteers. Using a 5-point Likert Scale, the 21 volunteers had an average overall comfort level of 3.9 prior to attending the training session and participating in either respite night. After completing the training session and participating in either respite night, volunteers had an average overall comfort level of 4.3, using a 5-point Likert Scale. Children When analyzing the childrens formative post-assessment data, or exit surveys that the volunteers assisted the children in completing at the end of the first respite night, a few themes emerged. These themes included shortening the movie time, incorporating outside activities, and incorporating more games and physical activity. One child with sensory concerns indicated he enjoyed the sensory room and crafts. Themes from the childrens feedback and from my informal observations indicated the need to decrease the duration of the movie, as children were becoming distracted and losing attention with the 70-minute movie. During the first respite night, the children found the most enjoyment in eating the meal and snack, playing with the various playground balls, tossing the bean bags, shooting basketball, playing musical instruments, making the craft, and socializing with others. On the childrens formative post-assessment, all of the listed activities were rated a 5 on a 5-point Likert Scale, indicating the children really enjoyed the activities. Five out of seven children rated the respite night to be a 5 on a 5-point Likert Scale, indicating they really enjoyed the evening. The other two children did not answer that specific question. All seven children 43 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities indicated they had fun and would return to future respite nights. During the first respite night, I realized there were a few children that I should not have paired up together due to sensory and behavioral concerns, as well as personality differences. I could solely go off of as much or as little information as the caregivers provided on the formative pre-assessment data form, or the registration forms when they registered their child. However, after having the opportunity to see the children engage in activities during the first respite night, I was able to use observation skills and obtain greater insight into each childs true sensory and behavioral needs. During the first respite night, I paired four volunteers with seven children. This allowed for three volunteers to be matched with two children and one volunteer to be matched with one child. The remaining five volunteers acted as floaters and ran stations, assisted with moving tables and chairs, and provided an extra set of hands with cleaning equipment. However, during the second respite night, all of the volunteers were matched up with one child. I used my observations from the first respite night to more appropriately match children with volunteers. All children that participated in the first respite night registered for the second respite night. However, due to changes in Easter plans, only three of the eight children that attended the second respite night also attended the first respite night. When analyzing the childrens formative post-assessment data from the second respite night, there were no common themes related to program development. The children found the most enjoyment in playing outside on the playground, eating the meal and snack, shooting basketball, playing musical instruments, shaking the parachute, using the building blocks, and socializing with others. All of the listed activities were rated a 5 on a 5-point Likert Scale, indicating the children really enjoyed the activities. Six out of the seven children that 44 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities completed the formative post-assessment rated the second respite night to be a 5 on a 5point Likert Scale, indicating they really enjoyed the evening. This provided for a group average enjoyment rate of 4.6. The other child did not complete a formative post-assessment due to his severe cognitive disability. All seven children indicated they had fun and would return to future respite nights. I made adjustments for the second respite night to incorporate more gross motor and high-energy stations and activities, focusing specifically on ensuring these stations were inclusive, and accessible to the child I had register for the second respite night that was going to be in a manual wheelchair. Due to that child not participating in the second respite night, I was unable to assess and observe whether or not the stations and activities I created would provide the child equal access to all materials and equipment. Discussion and Implications for Practice As the number of children being diagnosed with developmental and intellectual disabilities continues to increase, so do the number of caregivers taking on the responsibilities of providing care for these children and ensuring their needs are being met (Zablotsky et al., 2019). In order to ensure the caregivers needs are being met, participation in respite care services is extremely beneficial. There were multiple key findings I discovered while completing my DCE project of developing, implementing, and evaluating a respite care program. When reflecting on the results and objectives I set forth at the beginning of the project, and synthesizing information from the literature review, the key findings of this pilot respite program suggest caregivers participation in a respite care program are beneficial to reduce caregiver burden and improve psychological well-being. 45 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities 46 My primary goal was to create a respite care program for caregivers of children with disabilities, ages 5-18, in order to reduce caregiver stress and burden and improve caregiver psychological well-being. I specifically had a goal for at least 80% of caregivers to decrease their score on the formative pre- to post-assessment, which consisted of Zarit et al.s (1980) Caregiver Burden Scale. A decrease in score would indicate a decrease in caregiver burden and improvement in psychological well-being. After the first respite night, only one of five caregivers, or 20% of caregivers, experienced a decrease in caregiver burden, as measured by a change in score of at least 5 points on Zarit et al.s Caregiver Burden Scale. After the second respite night, three of five caregivers, or 60% of caregivers, experienced a decrease in caregiver burden, as measured by a change in score of at least 5 points on Zarit et al.s Caregiver Burden Scale. However, the caregivers written feedback on the summative assessment they completed after participating in both the first and second respite nights did not support this quantitative data. Multiple caregivers made comments about how participating in the respite nights was the first time they had been out together as a couple in over a year, how they felt relieved to be able to take their child out of the house instead of only having people over to their house, and how the event lifted their moods and spirits. One caregiver reported it would be beneficial for multiple churches to develop respite nights and have the nights occur on different days of the month, providing caregivers the opportunity to have multiple times a month to tend to their own needs. From both respite nights, all caregivers indicated they would benefit from continued respite care services and eight out of nine caregivers, or 89% of caregivers, indicated they would benefit from an additional group that offered educational sessions on how to develop healthy respite habits and routines. Due to time constraints with the DCE only being 14 weeks, I was unable to develop and implement an educational group for caregivers that related to developing healthy Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities 47 respite habits and routines. My inability to develop this additional group may be the reason why I was unable to successfully reach this goal. Two caregivers participated in both respite nights. After participating in both respite nights, one caregiver experienced an increase in caregiver burden by three points using Zarit et al.s (1980) Caregiver Burden Scale, although this was not significant because it was not greater than five points (Fekete, 2017). The other caregiver did not experience a change in the amount of caregiver burden they were experiencing. Caregivers may not have experienced a significant decrease in caregiver burden due to them only participating in one or two respite nights and not incorporating self-care strategies as part of a routine. In a 2013 study, Carter and Mandrell created a pilot hospital-based respite care program for children with cancer in order to reduce caregiver stress. Volunteers were hospital staff and were required to complete a pre-questionnaire, a satisfaction survey to assess their comfort levels and determine their fit for the role, a background check, and attend a mandatory 3-hour training session (Carter & Mandrell, 2013). After completion of the pilot program, caregivers and staff were surveyed using a 4-point Likert Scale, with results indicating a strong desire for continuation of the respite program (Carter a& Mandrell, 2013). The formal respite program provided respite services to the children seven days a week. Carter and Mandrell concluded that although their program is specific to children with cancer, their program model is successful and applicable to most pediatric care sites. Neufeld et al. (2001) surveyed caregivers of children with chronic conditions on the type of respite services they utilize. Results concluded that 73% of caregivers rely on formal respite services at least once a month and 55% of caregivers rely on in-home babysitting for their child at least once a month (Neufeld et al., 2001). The authors reported that 40% of Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities caregivers utilize respite camps for their older children with disabilities (Neufeld et al., 2001). Carter and Mandrells (2013) respite care program provides caregivers with consistency and routine. Neufeld et al.s (2001) study indicated that caregivers typically require and utilize respite services on a monthly basis. Caregivers will likely experience a more significant decrease in caregiver burden and improved psychological well-being if they consistently participate in a monthly respite program. Being provided the opportunity to engage in self-care tasks, leisure pursuits, and socialization for three hours one time a month for one or two months does not constitute enough time for caregivers to experience a true change in caregiver burden. As time progresses, and caregivers continue to consistently participate in NFUMCs respite program by incorporating it into their routine in order to establish a healthy habit, they will likely experience decreased caregiver burden and improved psychological well-being due to increased frequency and participation in self-care. When developing, implementing, and evaluating the pilot respite care program at NFUMC, I utilized a similar program model as Carter and Mandrell (2013). The authors discussed the high importance of the post-surveys using the 4-point Likert Scale, which provided critical feedback for program development. Within my project, I found these postassessments to be extremely informative because they allowed me to make vital changes between the first and second respite nights. These changes increased the childrens engagement in fine-motor, gross motor, and social skill activities and reduced the chance of challenging behavior to occur. I had an objective for at least 80% of volunteers participating in the respite program to increase their overall comfort level for interacting with children with disabilities by at least one point after completing the required volunteer training session and participating in the 48 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities respite nights. Four volunteers participated in both respite nights. During the first respite night, 27% of volunteers had an increase in their overall comfort level. During the second respite night, 36% of volunteers had an increase in their overall comfort level. One possible reason for volunteers not having change in scores in individual categories and overall comfort levels is because they are current or retired licensed special education teachers, healthcare professionals who have experience interacting with children with disabilities (i.e. occupational therapist, registered nurse, applied behavioral analysis therapist), are active or have been active volunteers in the churchs other special needs ministries, and/or are raising children with disabilities. When promoting the pilot respite program, I informed caregivers that all volunteers would be trained and educated prior to each respite night. The required training sessions were advertised on the flyers and the church website for both caregivers and volunteers to see. Requiring all volunteers to complete the 2-hour training session prior to participating in each respite night ensured all volunteers were well equipped to interact with the children with disabilities during the respite nights and helped ensure the safety of all individuals in attendance (Carter & Mandrell, 2013). As supported by the feedback received after caregivers participated in the respite nights, caregivers experienced increased comfort and trust knowing their children were dropped off at respite night with volunteers who had completed a 2-hour training session. These mandatory training sessions are a key component of the respite program moving forward. It is critical to have trained and educated volunteers, as it increases caregivers comfort levels and confidence levels when participating in respite services. Having trained and educated volunteers also increases the various diagnoses and health care needs the volunteers are capable of appropriately and safely accommodating and tending to 49 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities when interacting with the children with disabilities during respite nights (Whitmore & Snethen, 2018). I devised a goal for the children with disabilities to engage in a variety of stations that incorporated aspects of occupational therapy, such as gross motor, fine-motor, and social skills. Choosing the stations based on information identified on the childrens formative preassessment that was completed at registration was important, as it enabled me to ensure I was appropriately matching activities to the childrens cognitive, behavioral, sensory, and communicative needs and concerns. By implementing the formative post-assessment after the children participated in the respite night, I was able to track which activities the children preferred most. I was then able to make adjustments related to program development and meet the childrens needs and desires more appropriately during the second respite night. For future respite nights to be successful, this process should continue. Limitations Although there were many strengths of the respite program, it is important to recognize that limitations did exist. Limitations of the respite care program were that I was only provided the opportunity to pilot the respite program through the development, implementation, and evaluation of two respite nights. My role through this process was to develop a fully functional respite care program that NFUMC could continue implementing at the end of my DCE in order to decrease caregiver burden and improve psychological wellbeing, as well as continue engaging in community outreach. In order for the caregivers to truly experience a decrease in caregiver burden and improved psychological well-being, I would need to continue implementing the program and have the caregivers incorporate respite services into their routine. 50 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities As discussed in the literature review, another limitation was that caregivers were likely experiencing increased caregiver burden due to additional caregiving responsibilities and stresses as a result of the COVID-19 pandemic. This may have negatively impacted the amount of relief and decreased caregiver burden caregivers experienced through participation in the respite nights. If caregivers were experiencing a heightened level of caregiver burden, they may require more consistent respite services to experience a significant decrease in caregiver burden and improved psychological well-being. The date of the second respite night was a limitation, as it was planned for the Saturday of Easter. Multiple caregivers registered and then cancelled the day of the second respite night due to changes in Easter plans. Those caregivers were unable to attend and did not receive the respite services they had been planning on for a month, which may inadvertently had the opposite impact on their caregiver burden and psychological well-being. Although the respite nights were scheduled based on NFUMCs availability and when the church deemed the event would be most successful, more appropriate scheduling of future respite nights should occur to enable caregivers to participate in the maximum number of respite nights. In addition, sustainability of the respite care program moving forward may be a limitation. See Site and Community Impact below for issues related to the sustainability of the respite care program. Impact of DCE Personal Impact While completing my DCE at NFUMC, I discovered myself growing both personally and professionally. Personally, I increased my self-confidence through leading the volunteer training sessions. I am no longer fearful to stand in front of a large crowd and talk about 51 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities 52 topics I am passionate and knowledgeable about. I also improved my communication skills when conversing with caregivers and community organizations. My passion and heart for serving those with disabilities, and whom those with disabilities directly impact, grew even greater through this project. Professionally, I obtained in-depth knowledge on the role occupational therapy can play on psychological well-being, especially as it relates to caregivers providing care for children with disabilities. There are numerous aspects, as well as large and minute details that go into developing an entire program. I believe I have acquired the organizational skills necessary to develop a concrete, sustainable program that can be implemented for years to come and be of benefit for stakeholders. Through the development, implementation, and evaluation of the respite care program, I obtained skills related to the administration and interpretation of informal assessments, data collection, and data analysis. Specifically, I analyzed information related to childrens cognitive, medical, behavioral, communicative, and sensory needs to ensure I matched them with the appropriate volunteers. As a future occupational therapist, I will utilize a holistic approach and these same clinical skills on a daily basis when providing services to clients. In addition, I established connections with multiple community organizations that could potentially benefit me in the future, whether I am searching for a job position as an occupational therapist or helping the church recruit potential volunteers for future respite nights. Besides developing, implementing, and evaluating the respite care program, I also created a goal to obtain advanced skills in the areas of management, organization, fundraising, communication, community outreach, and/or administration through collaboration with the directors of family ministries, special needs ministry leaders, and leaders of various church Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities departments by assisting in three projects/events from at least four church departments. Not only did I obtain these skills through the development of the respite program, but I also obtained these skills through my collaboration with other church ministries and leaders. During my first two weeks at NFUMC, I created an online Google Excel spreadsheet and organized it by the different ministries I was involved with at the church. I included the advanced skill, valuable piece of information, resource, etc. I obtained from collaborating with different individuals within the church (see Appendix Q for my Excel spreadsheet of the advanced skills I obtained through collaboration with various church ministries). Site and Community Impact By developing and implementing this respite care program at NFUMC, I had the opportunity to educate church staff members about children with disabilities and the amount of caregiver burden that caregivers experience due to caregiving responsibilities associated with caring for a child with a disability. The church benefitted by learning to be more inclusive of children with disabilities and their families. NFUMC will continue to benefit because the development of this respite program is a method of community outreach to the greater Noblesville community. Families with children with disabilities in the Hamilton County area are now more aware of services that are available to them, and how these services can benefit them long-term. The lead pastor wanted to increase the quantity and quality of services provided by the churchs special needs ministry to not only its church members but also the Noblesville and Hamilton County community. This program benefits the caregivers because although many of them did not experience a significant decrease in caregiver burden, as measured by Zarit et al.s (1980) Caregiver Burden Scale, their feedback indicated that participating in this respite care 53 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities program was beneficial. They are provided the opportunity to spend three hours, uninterrupted, without any caregiving responsibilities, engaging in self-care, socializing with friends, participating in leisure activities, etc. The children with disabilities benefit because they participate in activities that incorporate fine-motor, gross motor, and social skills into them. The children are also provided the opportunity to form friendships and engage in socialization with similar peers during the respite nights. These social skills are critical for child development and during transitional periods, such as from high school to adulthood. NFUMC and Hamilton County will continue to benefit from this respite program, as the church has decided to continue implementing quarterly respite nights beginning in August. They plan to take the summer months off to provide families the opportunity to spend quality time together due to children being out of school, travel if they wish, and enjoy the weather outside. The Director of Family Services plans to take over the responsibilities associated with planning and implementing the respite nights, as she has prior experience with organizing respite nights from her previous leadership positions at different churches. I have shared all of the resources, documents, and materials with NFUMC via Google Drive and plan to remain in contact with the Director of Family Ministries to assist with planning and implementation of future respite nights. I also plan to prepare and lead all required volunteer training sessions prior to each respite night. NFUMC already has the next two respite night dates scheduled and confirmed on the calendar. The Autism Society of Indiana reached out to the church asking to form a partnership for future respite nights. The Autism Society of Indiana is going to advertise the respite care program on their website, social media platforms, and pass out promotional flyers. Professional Impact 54 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Through the development, implementation, and evaluation of this respite care program, I was provided the opportunity to advocate for the profession of occupational therapy. I often engaged in conversations with church staff members and church members about how the respite program was going. Many of these individuals would ask me to define occupational therapy and/or the purpose of the respite program. Whenever I engaged in conversations about the respite program, I strived to incorporate aspects of occupational therapy into the conversations in order to raise awareness about the profession. The flyers I created to promote the respite nights, as well as the registration page on the church website, included information related to occupational therapy. In addition, one specific caregiver was interested in learning more about how occupational therapy services could benefit her daughter with a disability. I engaged in conversation with her about the role occupational therapy plays in pediatrics and school-based settings, and discussed how occupational therapy could benefit her daughter. I also emailed her resources. Conclusion The development of this respite care program increases the quality and quantity of services readily available to caregivers of children with special needs in Noblesville and Hamilton County. Access to respite care services is now less of a barrier for caregivers tending to their health needs. Consistent participation in respite care services and incorporating respite care services into a healthy habit and routine will reduce caregiver burden and improve psychological well-being. NFUMC has a fully functional respite care program that benefits both caregivers and children with special needs. I have obtained many skills and an abundance of knowledge through the development, implementation, and evaluation of this respite care program. I am 55 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities looking forward to seeing how this DCE project continues to impact NFUMC, Noblesville, Hamilton County, and the profession of occupational therapy. 56 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities 57 References Botuck, S., & Winsberg, B. G. (1991). 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Journal of Intellectual Disability Research, 64(10), 739-749. 59 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Neufeld, S. M., Query, B., & Drummond, J. E. (2001). Respite care users who have children with chronic conditions: are they getting a break?. Journal of Pediatric Nursing, 16(4), 234-244. Peer, J. W., & Hillman, S. B. (2014). Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners. Journal of Policy and Practice in Intellectual Disabilities, 11(2), 92-98. Rehabilitation Measures. (2021). Zarit burden interview. Ability lab. Retrieved from https://www.sralab.org/rehabilitation-measures/zarit-burden-interview Remedios, C., Willenberg, L., Zordan, R., Murphy, A., Hessel, G., & Philip, J. (2015). A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions. Palliative Medicine, 29(3), 223-230. Rimmerman, A. (1989). Provision of respite care for children with developmental disabilities: Changes in maternal coping and stress over time. Mental Retardation, 27(2), 99. Romley, J. A., Shah, A. K., Chung, P. J., Elliott, M. N., Vestal, K. D., & Schuster, M. A. (2017). Family-provided health care for children with special health care needs. Pediatrics, 139(1), e20161287. United States Census Bureau. (2019). American fact finder: Noblesville Township, Hamilton County, Indiana. United States Census Bureau. Retrieved from https://data.census.gov/cedsci/table?q=NOBLESVILLE&tid=ACSDP1Y2019.DP05&hid ePreview=false Whitmore, K. E. (2016). Respite care and stress among caregivers of children with autism spectrum disorder: An integrative review. Journal of Pediatric Nursing, 31(6), 630-652. 60 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Whitmore, K. E., & Snethen, J. (2018). Respite care services for children with special healthcare needs: Parental perceptions. Journal for Specialists in Pediatric Nursing, 23(3), e12217. World Health Organization. (2018). Disability and health. Retrieved from https://www.who.int/news-room/fact-sheets/detail/disability-and-health Zablotsky, B., Black, L. I., Maenner, M. J., Schieve, L. A., Danielson, M. L., Bitsko, R. H., & Boyle, C. A. (2019). Prevalence and trends of developmental disabilities among children in the United States: 2009-2017. Pediatrics, 144(4). Zarit S.H., Reever K.E., Bach-Peterson J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist, 20:649-55. 61 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix A-1 Needs Assessment #1 1.30.2020 On-site with Associate Pastor 1. What are the current strengths of the church? a. Special needs ministry, Sunshine Friends, has been operating for over thirty years and has great community outreach b. Multiple outreach ministries within the church 2. What are the current weaknesses of the church? a. Lack of connection between outside community members with disabilities and the church b. Volunteers are so committed to their current ministries that the church does not want to overwhelm them, would likely need to recruit new volunteers if developed a new program c. Special needs ministry on Sunday mornings, Sunshine Sundays, primarily consists of adults with special needs no ministry focuses on children with disabilities or caregivers of children with disabilities d. Larger churches in the area have previously had respite nights for caregivers of children with disabilities 3. What are the current needs of the church? a. Expand Sunshine Sundays to include children with disabilities b. Provide support for caregivers of children with disabilities c. Parent support group for individuals with disabilities i. Educational sessions during the week d. Increase community outreach to greater Noblesville community 4. What are the churchs demographics? a. ~1,000 members attend all 4 services throughout the week 5. Can you describe the churchs current special needs ministries and outreach programs? a. Sunshine Friends b. Sunshine Sundays 62 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix A-2 Needs Assessment #2 5.22.2020 Via Zoom with Director of Student Ministries/Communications and Servant Coordinator, the Director of Family Ministries, and Communications Specialist (caregiver of a child with a disability) 1. How do you recruit volunteers for other outreach ministries? a. Advertise via social media, flyers b. Sign-up online via church website 2. Is it most important for me to target the caregivers of the children with disabilities or the children with disabilities? a. Impact of COVID-19 on caregivers psychological well-being b. Primary focus is on the caregivers 3. What impact will COVID-19 have on the respite care program? a. Buddy system b. Safety precautions c. 1:1 ratio 4. What unmet needs do you have as a caregiver of a child with a disability? (directed toward Communications Specialist) a. Lack of quality time with spouse b. Constantly on the go c. Education on various disability topics could benefit from parent support group i. Church has tried it in the past d. Knowing my child is safe and in good hands when we are participating in respite e. Contact local churches to ensure respite program does not conflict with other respite opportunities i. Would be great to create additional respite opportunities for caregivers 63 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B 14-Week Timeline Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 64 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 65 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 66 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 67 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 68 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 69 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 70 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 71 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 72 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 73 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix B. 14-week timeline that outlines my process for achieving my goals and objectives and carrying out the DCE project. 74 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix C Microsoft Excel spreadsheet Appendix C. Microsoft Excel spreadsheet of the $300 budget NFUMC provided me for the two respite nights. 75 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix D Respite Night Page on Church Website Appendix D. Respite Night page created on NFUMCs website. 76 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix D. Respite Night page created on NFUMCs website. 77 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix E Respite Night Flyer Appendix E. Respite Night flyer used for advertisement to various community organizations. 78 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix F Newspaper Articles Figure 1. The Times Newspaper article covering the pilot respite care program. https://thetimes24-7.com/Content/Columnists/Columnists/Article/First-UMC-intern-createsmuch-needed-respite-care/13/163/69506 79 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix F Newspaper Articles Figure 2. The Current Newspaper article covering the pilot respite care program. https://www.youarecurrent.com/2021/03/16/providing-relief-graduate-student-establishesrespite-night-for-caregivers-of-children-with-special-needs-at-noblesville-church/ 80 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix F Newspaper Articles Figure 2. The Current Newspaper article covering the pilot respite care program. https://www.youarecurrent.com/2021/03/16/providing-relief-graduate-student-establishesrespite-night-for-caregivers-of-children-with-special-needs-at-noblesville-church/ 81 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix F Newspaper Articles Figure 2. The Current Newspaper article covering the pilot respite care program. https://www.youarecurrent.com/2021/03/16/providing-relief-graduate-studentestablishes-respite-night-for-caregivers-of-children-with-special-needs-at-noblesvillechurch/ 82 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix G Registration Forms Figure 1. Volunteer registration form. 83 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Figure 1. Volunteer registration form. 84 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix G Registration Forms Figure 2. Updated volunteer registration form after the registration deadline passed. 85 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Figure 2. Updated volunteer registration form after the registration deadline passed. 86 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix G Registration Forms Figure 3. Caregiver registration form. 87 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Figure 3. Caregiver registration form. 88 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Figure 3. Caregiver registration form. 89 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix H Volunteer Training Session Videos Figure 1. A recording of the first volunteer training session that was converted to a video on the churchs YouTube channel. (https://www.youtube.com/watch?v=-YzovKkEoNY) Figure 2. A recording of the second volunteer training session that was converted to a video on the churchs YouTube channel. (https://www.youtube.com/watch?v=hBtz_AGsE90) 90 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix I Child Cheat Sheet Appendix I. Example of a cheat sheet each volunteer was given for the child(ren) they were matched with, including the childs medical, behavioral, communicative, and sensory needs. 91 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix J Caregiver Information Figure 1. Caregiver infographic including statistics on children with disabilities and respite care services. 92 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix J Caregiver Information Figure 2. Educational video emailed to caregivers prior to each respite night that discussed the importance of participating in respite care services, how respite care services can benefit them as caregivers, and the importance of incorporating respite care services into a monthly routine to establish healthy habits. (https://www.youtube.com/watch?v=naG1IMRf9_w) 93 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix K First Respite Night Volunteer Final Reminder Email Appendix K. Email sent to volunteers prior to the first respite night, including final reminders and responsibilities. 94 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix L Child Name Tag Colored Sticker Key Appendix L. Key indicating what each colored sticker meant on the childrens nametags. 95 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix M Respite Night Schedules Figure 1. Schedule of the first respite night. 96 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix M Respite Night Schedules Figure 2. Schedule of the second respite night. 97 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix N Formative Assessments Figure 1. Formative post-assessment for volunteers. 98 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix N Formative Assessments Figure 2. Formative post-assessment for children. 99 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix N Formative Assessments Figure 3. Formative pre- and post-assessment for caregivers. Zarit et al.s (1980) Caregiver Burden Scale converted into online format using Qualtrics. (https://uindy.co1.qualtrics.com/jfe/form/SV_9ZT3QjLU0SQRfAW) 100 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix O Caregiver Welcome Email Hello, (CAREGIVER)! Thank you for registering for the respite nights on 3/6 and 4/3 at Noblesville First United Methodist Church. I am Hanna Rose, the coordinator for the Respite Program and the Family Ministry Intern. I am developing this program as part of my final project in my Doctorate of Occupational Therapy studies at the University of Indianapolis. I am extremely excited to have you and (CHILD) participate in this program! I believe you will both benefit from this program, which is my ultimate goal. In just a few days, I will be sending out a video to you, describing in detail the events that will take place during respite night and providing additional information related to how you can benefit from respite services. NFUMC and I want to serve you and your family to the best of our abilities. In order to meet university requirements, I have to collect data throughout the development of this program. Below you will find a link to a research-based survey that is used to assess perceived burden among people caring for others with disabilities. There are 22 questions, which will take approximately 5-10 minutes to complete. If you don't mind taking the time to complete this survey, it would greatly benefit the development of this program. After the completion of the first respite night on 3/6, I will be sending you an additional email with this same survey, and ask you to complete the survey again. The information I gather from these surveys will be very helpful in identifying any changes in your stress levels and psychological well-being as a caregiver. I know that you have registered (CHILD) for the second respite night on 4/3. This same process will occur for that respite night as well, where I will send out an email with the survey link once again following the respite night. Thank you very much for registering for these events!! Please do not hesitate to contact me with any questions you may have, or if you would like any additional information. I look forward to talking with you again soon and meeting you! Have a great day! Here is the survey link where you can access the survey: https://uindy.co1.qualtrics.com/jfe/form/SV_9ZT3QjLU0SQRfAW 101 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix P Summative Assessment Appendix P. Summative assessment for caregivers. (https://uindy.co1.qualtrics.com/jfe/form/SV_cvV0p3wtRUjyasS) 102 Respite Services and the Psychological Well-Being of Caregivers of Children with Disabilities Appendix Q Excel Spreadsheet of Advanced Skills Appendix Q. Excel spreadsheet of the advanced skills I obtained through collaboration with various church ministries at NFUMC. 103  ...

... Running head: ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS Health Literacy and the Importance of Accessible Resources for Individuals with ALS Kelly Randall August 2021 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Alison Nichols, OTR, OTD 1 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 2 Abstract Health literacy is a large component of a patients understanding of educational healthcare materials. Because educational materials in healthcare are usually written at relatively high literacy levels, they are inaccessible to the individuals who need it most: the patients and their caregivers. By limiting the accessibility of this information, it can impact the quality of life and level of independence patients have in the future. During this project, a program called Readable was utilized to improve current best practices and existing documents for individuals with amyotrophic lateral sclerosis (ALS). Individuals with ALS and former caregivers were interviewed in order to create optimal resource guides and improve the accessibility of information for the Les Turner ALS Foundation. Through interviews, it was discovered that tone, word choice, and the amount of information presented were all vital to the approachability and comprehension of healthcare material. The importance of how new healthcare documents were presented was also discovered. In this case, individuals with ALS and former caregivers felt the sooner materials were provided, the better. While Readable indicated that literacy levels of documents had decreased by an average of 1.27 grade levels, participants also deemed the resource guides approachable and easy to read. This information is important so that organizations can improve their educational materials and ensure a broad audience has access to new and critical health-based information. ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 3 Introduction There are numerous scientific articles and resources for people with amyotrophic lateral sclerosis (ALS) but unfortunately, many of those resources are not accessible to the population they are aimed towards. ALS is a neurodegenerative disease that affects motor neurons in the body, causing muscle weakness and atrophy (Oh & Kim, 2017). This is a complex condition with no cure, and the life expectancy for someone with ALS is as few as two years (Lewis & Rushanan, 2007). Vital resources must be made available to the public so individuals with ALS can navigate their care as easy as possible. These resources must be made available and administered by ALS organizations and ALS multidisciplinary care teams because often individuals with ALS are not receiving comprehensive information regarding their care during their doctor's visits, due to the doctors lack of understanding regarding ALS (Soofi, Bello-Hass, Kho, & Letts, 2017). Information that everyone can access and comprehend is important because of the rapidly changing nature of ALS. Throughout the disease progression, it is common for individuals with ALS to require various assistive devices (AD), durable medical equipment (DME), and alternative and augmentative communication (AAC) devices. Individuals may need various types of wheelchairs, lifts, and daily devices, like a universal cuff, in the remaining years of their lives. These items are necessities for individuals with ALS to maintain independence as long as possible. Although these items are incredibly beneficial to people with ALS, many individuals do not know such items exist or refuse to use them. With this information in mind, I completed my Doctoral Capstone Experience at the Les Turner ALS Foundation (LTALSF), which is located in the Chicagoland area and provides services to individuals with ALS of various backgrounds, races, socioeconomic statuses, and ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 4 different stages of life. The population that the LTALSF foundation works with also includes individuals with varying degrees of education and a wide range of health literacy levels. The LTALSF supports the Lois Insolia ALS Clinic which is supported by Northwestern Medicine. The foundation has provided support through grants, care coordinators, support groups, equipment loans, and resources to individuals with ALS in the Chicagoland area since 1977 (Les Turner ALS Foundation, 2021). Les Turner ALS also gets calls and emails from individuals with ALS from all over the country regarding support services and resources. In addition to providing services for individuals with ALS, the foundation also provides services for individuals with primary lateral sclerosis (PLS). PLS is similar to ALS, but PLS only affects upper motor neurons and progresses more slowly than ALS (Statland, Baron, Dimachkie, Floeter, & Mitsumoto, 2015). Health Literate Care Model For my doctoral capstone experience, I am using the Health Literate Care Model, which is promoted by the Department of Health and Human Services. This model is based on the widely adopted Care Model, which encourages engagement of staff, patients, caregivers, and patients families to meet the patients healthcare needs and make decisions (Koh, Brach, Harris, & Parchman, 2013). Researchers have found that hundreds of health care organizations have used the Care Model and that it is proven to increase the quality of care and health outcomes for patients (Koh et al., 2013). This model is used to improve productivity between health care teams and patients by allowing practitioners to gain relevant patient information and be proactive, as opposed to reactive, in making healthcare decisions (Koh et al., 2013). This model puts healthcare providers and organizations at the center and encourages medical systems to partner ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 5 with other providers in the communities to meet additional patient needs to continue to promote patient engagement and provide further quality care (Koh et al., 2013). The Health Literate Care Model adds on to the Care Model, but it includes the topic of health literacy to increase understanding of vital healthcare information that can directly impact healthcare outcomes (Koh et al., 2013). It is now clear that across the country, health literacy is a systems issue and needs to be addressed by healthcare organizations to improve care and communication (Koh et al., 2013). Researchers agreed that adopting health literacy universal precautions can improve healthcare for everyone and acknowledges that even someone with adequate health literacy skills might experience decreased understanding, depending on the information delivered, stress, and health symptoms. There are many aspects of the Health Literate Care Model including the individual, the health care organization, self-management support, community partners, and improved health information systems as seen in Appendix A (Koh et al., 2013). This model is used to even the playing field for people who have low health literacy levels and ensures that quality care is provided to everyone (Koh et al., 2013). Researchers go on to say, In recognition of these themes, the Health Literate Care Model represents a practical systems framework for organizations that aspire to adapt to all patients health literacy challenges comprehensively, synergistically, and proactively. It offers the potential for patients to better understand their options; benefits from community services that improve wellness, prevention, and chronic care management; view their relationships with provider teams positively; and make informed decisions (Koh et al., 2013, p. 9). This model is focused on making changes at organizational levels. Although I am only one person utilizing this model for my doctoral capstone experience, I am also sharing this with my ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 6 mentors and colleagues to work toward organizational change. For my project specifically, I am using this model more as a general guide that will hopefully lead to a broader change in the future. Occupation Based Model The occupation-based model selected for my DCE at the LTALSF is the PersonEnvironment-Occupation (PEO) model. In this model, there are three components, which include the person, occupation, and environment. The person component involves looking at the individual holistically including their mind, body, and spirit (Law et al., 1996). The environment is the context in which the individual exists such as work, home, school, and the community (Law et al., 1996). Lastly, the occupations are the meaningful activities that the individual engages in to feel fulfilled (Law et al., 1996); these could include working, exercise, hobbies, and necessary daily activities. This model is dynamic and is always changing throughout the persons lifespan (Law et al., 1996), which is important when working with individuals with ALS because their PEO fit, where the three components overlap, may frequently change once they receive a diagnosis and when symptoms start to appear. Once symptoms start to affect the individuals life, the PEO fit will likely decrease. The goal when using PEO is to increase occupational participation by maximizing the fit of the model (Law et al., 1996). The goal of the DCE program is to help maximize the patients PEO fit by providing resources to individuals with ALS so that they can interact with their environment through occupation independently for as long as possible. Frame of Reference The frame of reference selected for this DCE capstone is the lifespan development frame of reference. The focus of this frame of reference is to assist clients with restoring age- ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 7 appropriate tasks and to help them navigate transitional life experiences and adapting to changes in health due to the development or exacerbation of health conditions (Cole & Tufano, 2008). The occupation-based model and frame of reference work well together since the PEO is inherently a lifespan model because it changes throughout the individuals lifespan as they grow older, develop conditions, engage in new occupations, change environments, or even take on new roles. Many individuals who utilize the LTALSF are newly diagnosed and have many questions and concerns about how the rest of their life will look. This DCE program will use the lifespan frame of reference to engage with the clients through this transitional period in their life and to keep in mind that the clients just want to be able to live life as peers their age do for as long as possible. The purpose of this literature review is to explore the benefits, barriers, and importance of creating resources regarding AD, DME, and AAC, for individuals with ALS to support my occupational therapy (OT) doctoral capstone project of creating educational resources for the LTALSF. Literature Review Amyotrophic Lateral Sclerosis Amyotrophic lateral sclerosis, also known as Lou Gehrigs disease, is a progressive neurodegenerative disease. ALS leads to muscle atrophy, changes in reflexes, difficulties with speech and swallowing, and loss of voluntary motor control (Johnson et al., 2017). As a result, patients gradually lose the ability to independently walk, stand, and use their upper and lower extremities (Oh & Kim, 2017). These deficits caused by ALS make performing activities of daily living (ADL), work tasks, leisure activities, and other occupations increasingly more difficult as the disease progresses (Connors, Mahony, & Morgan, 2019). Unfortunately, there is no effective ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 8 treatment for this condition and the average life expectancy for ALS is 2-4 years after diagnosis (Soofi et al., 2017). Because of the relatively rapid functional decline of individuals with ALS, there is a need for competent, comprehensive, and responsive care. Several rehabilitative measures, such as exercise and the use of assistive devices, have been found to increase functional independence for individuals who have ALS (Arbesman & Sheard, 2014). Interventions focusing on mental health, due to depression and other mental health conditions being common comorbidities with ALS, are used alongside medication and other therapeutic treatments (De-Bernadrdi-Ojuel, Torres-Collado, & Garcia-de-la-Hera, 2021). This care is often delivered through a multidisciplinary team, complied of a neurologist, pulmonologist, dietician, nurse, occupational therapist, speech-language pathologist (SLP), and several other specialists to adequately treat individuals with ALS (Driskell, York, Heyn, Sanjak, & MacAdam, 2019). Multidisciplinary Teams and the Role of Occupational Therapists Over the past few decades, multidisciplinary ALS clinics have been established to provide palliative and symptomatic care to patients with ALS (Horton et al., 2018). Currently, three ALS organizations fund over 70 multidisciplinary clinics in the United States of America (Horton et al., 2018). Patients with ALS often join multidisciplinary teams for their treatment because ALS impacts several body systems, which requires a higher level of care to manage the disease (Hogden, Greenfield, Nugus, & Kiernan, 2013). A multidisciplinary team approach also makes managing medical information, appointments, and medications easier (Driskell, York, Heyn, Sanjak, & MacAdam, 2019). In a literature review of over 100 studies to explore the spectrum of care from diagnosis to end of life, researchers found that patient-centered, multidisciplinary care benefited the lives of individuals with ALS and was the standard of care as the treatment focus switches from cure to care (Paganani et al., 2015). ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 9 On this team, an OT enabled patients to participate in their activities of daily living, such as dressing, eating, reading, writing, and grooming as independently as possible through the use of assistive devices and orthoses (Pagani et al., 2015). According to Lewis and Rushanan, OTs individually assessed each patient and their client factors, such as strength, spasticity, and levels of fatigue (2007). The OTs job was to evaluate a patient and then educate the patient on the assistive and communicative devices (Soofi et al., 2017) that were appropriate for them based on their client factors, symptoms, and the progression of the disease (Lewis & Rushanan, 2007). Researchers found that OT can improve occupational performance and that there were four categories of interventions used with individuals with multiple sclerosis (MS) and ALS: energy conservation education and interventions, physical interventions, cognitive interventions, and other interventions that did not fit in the previous categories (De-Bernardi-Ojuel, TorresCollado, & Garcia-de-la-Hera, 2021). Recent research has also made it increasingly clear that it is not uncommon for individuals with ALS to have cognitive and neuropsychiatric symptoms, with about ten percent of individuals with ALS also being diagnosed with frontotemporal dementia (Hsieh et al., 2016). De-Bernardi-Ojuel, Torres-Collado, & Garcia-de-la-Hera (2021) reported that although it was difficult to find OT-led studies with individuals with ALS, they could determine that the interventions improved fatigue, memory, depression, and quality of life in ALS and MS populations. Assistive Devices In addition to cognitive changes, patients also experience changes in their ability to walk, talk, feed themselves, bathe, dress, drive, work, and provide for their families (Connors et al., 2019). For many individuals with ALS, this led to a loss of control over their life, which caused adaptation to be necessary (Foley, Timonen, & Hardiman, 2014). According to researchers, the ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 10 primary reason participants used assistive devices was to adapt to a loss of control of health by gaining control over the environment (Laniconi et al., 2015). According to researchers, the rehab team needed to include using assistive devices in their treatment sessions because the devices ensured that clients could continue to be functionally independent at work, at home, and in their communities for longer (Paganoni, Karam, Joyce, Bedlack, & Carter, 2015). Assistive devices were used to improve communication, mobility, and fine motor skills (Scott et al., 2015), in addition to compensating for a diminished range of motion and strength, like when utilizing a motorized wheelchair instead of a manual wheelchair (Paganoni et al., 2015). OTs commonly recommended assistive devices to aid in ADL, IADL, and leisure activities. These include button hooks, shoe horns, dressing sticks, reachers, long-handled sponges, universal cuffs, shower chairs, utensils with built-up handles, raised toilet seats, shower seats, slip-on shoes, transfer boards, grab bars in the bathroom, Velcro fasteners for dressing, wrist orthoses at 30 degrees extension, and wheelchairs (Arbesman & Sheard, 2014; Lewis & Rushanan, 2007; Scott, Sener, Shannon, Roche-Green, & Boylan, 2016). Augmentative and Alternative Communication. As ALS develops, it is common for a patient to develop speech and swallowing difficulties, especially with the bulbar-onset form of ALS (Maresca et al., 2019). This can be one of the most disabling symptoms due to speech and communication being an integral function of social participation (Maresca et al., 2019). Communication is especially imperative as this disease progresses, in order for individuals to make their wishes, concerns, and needs at the end of life known (Brownlee & Bruening, 2012). Loss or anticipated loss of speech can also be ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 11 emotionally taxing for patients as it can be seen as a loss of humanity and autonomy, and therefore adds to already increasing stress related to ALS (Brownlee & Bruening, 2012). To combat this loss of voice, augmentative and alternative communication (AAC) is used to assist individuals via written and spoken communication devices. AAC can range from low tech, such as paper-based systems consisting of communication boards, to more high-tech options consisting of complex, designated electronic devices (Broomfield, Harrop, Judge, Jones, & Sage, 2019). High tech AAC can even be used to produce speech through stored messages through the process of voice and message banking (Broomfield et al., 2019). As a result, AAC tools and training were created to aid individuals with ALS in being able to functionally communicate (Maresca et al. 2019). Researchers have found that AAC positively impacts mood, relationships, and quality of life in individuals with ALS (Maresca et al., 2019). Barriers to Receiving Quality Care Although AD, AAC, and DME were found to be very beneficial to patients with ALS (Arbesman & Sheard, 2014), researchers also found that patients were under-informed about treatment options and that there was a lack of understanding of ALS by healthcare professionals (Soofi et al., 2017). For example, researchers found many individuals with ALS, their caregivers, and even some SLPs were not familiar with message banking and AAC (Oosthuizen, Dada, Bornman, Koul, 2018). As a result, patients reported receiving little help navigating the educational materials and services that were available (Soofi et al., 2017), indicating a need to bridge the gap in communication through widely available educational materials written at an appropriate level. In many cases, it was not uncommon for patients to view using assistive devices as a defeat; when in actuality, they could use them to improve their independence and quality of life (Paganoni et al., 2015). Therefore, in addition to providing information that is ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 12 easier to understand, healthcare professionals also need to update the conversation around assistive devices. Another critical barrier to accessing important health-related information is individuals with ALS not being able to understand the educational materials available to them. Health information can be difficult for individuals to understand due to low health literacy rates in the southern portion of the Chicagoland area where the LTALSF serves (The University of North Carolina at Chapel Hill, 2014). It was also estimated by Southern Illinois UniversityEdwardsville, as cited by the Chicago Citywide Literacy Coalition, that 30% of adults in the Chicagoland area have low basic literacy skills (2019). The elevated level at which most healthrelated information is written also adds to decreased understanding (Safeer & Keenan, 2005). Healthy People 2030 recently updated the definitions of health literacy to now include a definition for personal health literacy and organizational health literacy. According to the U.S. Department of Health and Human Services Healthy People 2030 initiative, personal health literacy is defined as, the degree to which individuals can find, understand and use information and services to inform health-related decisions and actions for themselves and others (2020, para. 5). Organizational health literacy has been described as, the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others (U.S Department of Health and Human Services, 2020, para. 5). This new definition for organizations is important because it puts the responsibility on the organizations who publish health information to meet their audience where they are instead of putting the responsibility on the reader to be able to understand it, which in turn makes the information more accessible. Simple Measure of Gobbledygook and Readability ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 13 The Simple Measure of Gobbledygook (SMOG) index (McLaughlin, 1969) is a formula used to determine the grade level necessary for a complete comprehension of the educational material (Fitzsimmons, Michael, Hulley, & Scott, 2010). Researchers determined that the SMOG Index was the gold standard in a study about the readability of websites containing information about Parkinsons, which is another chronic neurodegenerative condition (Fitzsimmons, Michael, Hulley, & Scott, 2010). Researchers have also found that the SMOG Index was able to more accurately estimate the reading level of the web pages as compared to other readability measures (Fitzsimmons, Michael, Hulley, & Scott, 2010). According to the Agency for Healthcare Research and Quality written health-related materials should be between a fourth-grade and sixth-grade level (2019) although other sources recommend writing at or below a tenth-grade level (Readable, n.d.). This is to ensure that everyone can read the materials, since many adults read at an eighth or ninth-grade level, despite health care materials being written at a tenth-grade to twelfth-grade level (Safeer & Keenan, 2005). It is important to determine the readability of educational materials because old age, lower socioeconomic status, and other vulnerable populations typically have lower levels of literacy (Ferguson, Merga, & Winn, 2021). Therefore, health documents must be written at lower health literacy levels to be accessible to larger populations because almost anyone can develop ALS anywhere in the world (De-Bernardi-Ojuel, Torres-Collado, & Garcia-de-la-Hera, 2021). Conclusion To conclude, researchers indicated that assistive devices are crucial to maintaining independence and quality of life after being diagnosed with ALS and that OTs could improve quality of life through rehabilitation and introducing the patients to assistive devices (Soofi et al., 2017). Unfortunately, there are many barriers to obtaining the necessary assistive devices, such ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 14 as a lack of accessible information being presented to the patient at an appropriate health literacy level (Soofi et al. 2017). Multidisciplinary clinics were found to be key in helping patients receive the necessary devices and educating them on what is available to increase their quality of life (Paganoni et al., 2015). The evidence shows that assistive devices can be beneficial to participants when they are educated on them, especially when written and explained in a way that patients can understand. The barriers that prevent individuals from obtaining the devices and a lack of understanding and communication in regards to assistive devices and health literacy has led to decreased function and quality of life for individuals with ALS. The proposed DCE project will bridge the communication gap between healthcare professionals and patients and also help individuals gain valuable knowledge, which will improve independence and quality of life for patients with ALS. Methods The LTALSF received financial support shortly before the capstone experience started. The grant was to help improve resource materials, specifically with graphic design and health literacy through a third party. I was given the opportunity to recreate 2 out of 11 resource guides relating to occupational therapy. After reviewing the existing resource guides, research, feedback from other staff, and based on my own clinical knowledge, it was determined that these resources were out of date and not written with the reader in mind. The documents were uploaded and analyzed through Readable, an online service that grades documents on readability. All documents were given a grade level of over tenth grade, which was deemed too high for our target audience by the Foundation and myself. Other important measures used by Readable to promote understanding are Grade and Reach. Readable gives each document it analyzes a letter grade, A through F based on number of polysyllabic words, sentence length, ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 15 grammatical errors, and other factors (Readable, n.d.). Reach is a percentage of the population that will be able to understand the information easily in the document based on the reading level of the general public (Readable, n.d.). Not only were there multiple instances of outdated language centering around gender and race inclusivity, but there were also spelling and grammatical mistakes. There were several unsound clinical recommendations that were deemed unsafe by myself and a third-party occupational therapist. These changes were included to promote inclusivity so that not only can more people understand this material, but they can also feel as though this information was written for them regardless of the color of their skin or their gender identity. I also split the resource guide about ADL into two guides focusing on ADL and Mobility. This was because the existing guide was over 20 pages without pictures. I knew eventually LTALSF would add illustrations via a graphic designer to improve understanding, and therefore, the length of the guides would increase even further. The decision to split up the ADL guide was to decrease feelings of being overwhelmed by the amount of information provided. After making several rounds of edits, I consulted an occupational therapist, a SLP, a registered nurse, and several others to assist me by providing feedback to my resource guides. Primarily they assisted with content and made suggestions of what they commonly say and recommend to patients in their clinical practice. I then worked on formatting by making sure the look of my guide matched up with the media guidelines that Les Turner uses for document aesthetics. Lastly, before presenting my resource guides to the participants with ALS and caregivers, I asked for final feedback from my site mentor and the CEO of the LTALSF. I selected overall grade, reach percentile, and SMOG index as my criteria for my project due to the SMOG index being heavily used when grading health literacy and considered the ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 16 gold standard for determining readability for healthcare-related materials (Readable, n.d.). Many of the terms I used in the resource guides are medical terms, brand names, or names of equipment; therefore, Readable flagged those as misspelled or words that are too difficult to understand. Because of how Readable grades these necessary words, I decreased the SMOG Index scores to10th grade level and lower. This is what is recommended by the Readable software (Readable, n.d.). My main technique to decrease the SMOG index was to break up long, complex sentences into shorter more simple phrases. I also made the tone of the document more friendly and approachable, by directly addressing the reader. I made a handout (see Appendix B) with the strategies I used to lower the reading level for other employees of the LTALSF to use in order to have cohesive language and tone in the remaining resource guides. The headings were also changed in order to improve the readers ability to navigate the document and find desired information more quickly. Participants After the guides were deemed appropriate for participant feedback, I contacted people with ALS and caregivers via email from a pre-determined list. Two people with ALS and 4 former caregivers agreed to participate and were provided with an informed consent and confidentiality document, which they all agreed to. My inclusion criteria included people over 18 with ALS who speak English, or who were caregivers of people with ALS. It was not required that they use a Speech Generating Device (SGD), but that was preferred when reviewing the Speech and Communication Resource Guide. My participants were all between the ages of 47 and 75 years old. There were two male participants and 4 female participants who all identified as white. One participant had been living with ALS for 8 years, and the other participant had been living with ALS for 12 years. The participants were sent a $50 Amazon gift card for their ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 17 time, which was funded by the Foundation. The interviews were conducted via Zoom and lasted between 30 to 60 minutes. I asked the participants several questions (see Appendix C). The questions asked were modified from an existing moderator guide created by CommunicateHealth, which is working with the LTALSF on other educational projects. Results Qualitative Results Nothing about us without us is a phrase that has been used in the disability rights movement since it was popularized in South Africa in the 1980s (Franits, 2005). The LTALSF wanted to take inspiration from this phrase and take specific steps to include people with ALS and caregivers when getting feedback on the new resource guides (see Appendix D to read the ALS & Communication Resource Guide). I have gathered data from six participants that fall into four different categories regarding ALS, readability, and the presentation of new information. For privacy, the names of individuals interviewed for the study have been changed. Tone and Readability The first theme that arose was that the tone and language needed to be warm and friendly, easy to read, and informative. Many participants stated that they enjoyed the tone and that it was relaxed and inclusive, while also being professional and well-written. Nancy stated, The tone was open, easy to read, and not intimidating. Its a friendly document if I can call it (the document) that. Several participants also applauded our use of the words you and your instead of patient or individual with ALS, which they said contributed to the tone. When asked about the readability, participants reported that it was easy to read and easily understood. John stated, It was good. I was a lawyer and would write documents for people with high school education. I think this can be very easily understood. In addition to John, when asked about the ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 18 readability, Susan reported There is not a lot of science to read through. The vocabulary is sufficient and would be acceptable for people whose first language is not English. All participants agreed that they would recommend these documents to others based on tone, readability, depth of content, and other factors. Visual Aids and Illustrations All participants stated that the resource guides lacked visuals to accompany the text. Many also stressed the importance of not adding too many visuals and that the visuals need to be the correct style. Amy stated, There should be icons at the headings. Too many icons and the graphics can be too much or clich or cheesy. There should also be an icon of a light bulb or a pin specifically for information you want to be called out or action items. One participant stated that we should use international healthcare symbols and another participant echoed the importance of simplicity by stating Make sure its not illustrated like an airplane safety pamphlet. All agreed that simple illustrations or icons would be best and that photographs might make the material look dated. Participants also went beyond icons and discussed the benefits of accompanying videos. Carol stated, Videos might help with understanding and might be more approachable (than written materials). When to Introduce New Information When asked about when to introduce the resource guides to individuals with ALS, all participants stated that sooner is better. Susan stated, In the first couple of clinic appointments. Maybe the first one after the bad news. It should be right at the beginning though. Several other participants had similar thoughts. Amy stated, This information should be present at diagnosis. Getting diagnosed is overwhelming in general. Time is of the essence though. The more you can prep the better. They dont need to do all these things, but they need to read and start ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 19 processing. William, a participant with ALS, had a different opinion and stated, It (when to present the resource guides) depends on when people reach out to Les Turner. Once they get a home health nurse is probably the best time. Regardless of in the clinic or at home, all agreed that earlier on is best, even if the information is a lot to process. The Right Amount of Information When asked about the content covered many participants stated that it was not overwhelming or intimidating in any way. Amy stated, I didnt think there was anything overwhelming, but I have also been through it. I think it has the right amount of information. Many of the participants reported that these resource guides were good for beginners, stating The topics were covered well as a first step. I dont have to read through half the packet to find the answer to my question. Another participant stated, For beginners, its not frightening. In this case, the more basic the better. These statements coincided with our mission to create basic guides as a starting point for people with ALS. These documents were written to be launching pads for information and questions so that patients and caregivers can do their own research based on their specific needs or facilitate a conversation with their ALS care team. Quantitative Results Readable scores To increase readability, I used the website Readable. It guided us through the necessary changes on how to decrease the reading level according to the SMOG Index. By decreasing the number of multi-syllable words, sentence length, and using simpler vocabulary I decreased the SMOG index by an average of 1.27-grade levels. Readable results are listed in Table 1 and Table 2. Table 1 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 20 Original Resource Guide Readability Statistics Resource Guide Grade SMOG Index Reach ALS & Communication B 12.4 85% ALS & ADLs A 10.8 100% ALS, Mobility, & Home A 10.2 100% Resource Guide Grade SMOG Index Reach ALS & Communication A 10.0 100% ALS & ADLs A 9.8 100% ALS, Mobility, & Home A 9.8 100% Modifications Table 2 Edited Resource Guide Statistics Modifications Discussion Through this doctoral capstone experience, I aimed to increase the accessibility of educational health materials about living with ALS by decreasing the SMOG Index and improving the content, tone, and flow of two documents. With the help of several participants affected by ALS, colleagues in support services at the LTALSF, and other healthcare professionals, I have done just that. It was through their feedback that I could improve the resource guides to make them less overwhelming and more comprehensible. I not only ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 21 discovered that what I wrote was deemed acceptable by individuals who were affected by ALS, but also according to Readable, the resource guides were quantitatively easier to understand. I learned from participants that it is vital to provide newly diagnosed patients with relevant information as soon as possible. The theme of promoting the use of early education to inform proactive health decision-making and early action is not new. Brownlee and Bruening (2012) found that individuals with ALS did not receive referrals for SLP evaluations early enough which impacted the care individuals with ALS were able to receive due to the disease progression. I learned through research and my participants that the way materials were presented is almost as important as the content of the material itself. Research by Soofi and colleagues agreed, stating that several of their participants claimed that it is important for patients to receive the appropriate amount of ALS educational materials at the proper time (2017). This is dependent on how fast the disease is progressing and the clients desire and readiness to learn more in addition to the state of the patients mental health (Soofi et al., 2017). Another theme that is similar to existing research results is that that there is a desire for further mediums of education, although more research is necessary to determine the effectiveness of alternative forms of education, like videos (Kho et al., 2013). While Readable and my participants stated that a reading level of ninth or tenth grade was acceptable, other researchers report that reading levels should be limited to fifth grade or lower (Safeer & Keenan, 2005). While I would have liked to decrease the reading level of my resource guides even further, that was just not possible due to several limitations which were mainly due to the Readable software. Limitations ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 22 This project had several limitations. One limitation was the small sample size, as I only interviewed six people. The sample size may have been limited due to the nature of the disease. Many people did not have the energy, stated they were busy, or simply did not reply to the email. The group was not diverse and was highly educated, which is not representative of the vast population that LTALSF serves. While we collected a lot of general information about delivering information to people with ALS and the importance of that information, we did not get a lot of information about the participants health literacy level and how readable the documents are for someone who has a lower literacy rate. Another limitation was that the participants did not read both versions of the resource guides, the original and the edited version. They could not compare the two as we only met one time with participants. Readable Limitations The program that we used to edit the documents, Readable, was very useful but was somewhat limited because it is an automated program. Words that I deemed necessary to the resource guides such as occupational, communication, essential, disability, challenges, and modifications were reported as difficult words. There were also several times that I made the recommended changes to the document and the SMOG Index score would increase instead of decrease. While I think that the software was very beneficial most of the time, I think it is important to have a health literacy specialist also review the resource guide documents before they are finalized. Implications Through this project, I hope that LTALSF and other organizations that serve patients can present resources in a similar way that patients and caregivers can find acceptable. With this information and further interviews, organizations can strike a balance by providing enough ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 23 information to be useful while also keeping in mind the patients mental health. It is important to not disregard the information that can be deemed scary or overwhelming but to also keep in mind that this is a big change for individuals who have been newly diagnosed with ALS. In the future, researchers should do more to learn about the best way to deliver healthcare information, especially in populations with terminal illnesses. Occupational therapists also can have a prominent role in organizations like the LTALSF, and I hope to see more occupational therapists and occupational therapist assistants in health education and advocacy roles in the future. Recommendations During my capstone project, I only improved two out of several resource guides. In the future, I recommend continuing to interview participants because they provide vital information and unique insight of the diagnosis. I also recommend a second round of interviews with people who have a lower health literacy level, instead of former lawyers and engineers that I interviewed, to determine how readable the documents actually are. I think more diversity among participants could also be beneficial moving forward. ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 24 References Agency for Healthcare Research and Quality. (2019). Health literacy. Retrieved June 03, 2021, from https://psnet.ahrq.gov/primer/health-literacy Arbesman, M., & Sheard, K. (2013). Systematic review of the effectiveness of occupational therapy-related interventions for people with amyotrophic lateral sclerosis. American Journal of Occupational Therapy, 68(1), 20-26. doi:10.5014/ajot.2014.008649 Broomfield, K., Harrop, D., Judge, S., Jones, G., & Sage, K. (2019). Appraising the quality of tools used to record patient-reported outcomes in users of augmentative and alternative communication (AAC): A systematic review. Quality of Life Research, 28(10), 2669-2683. doi:10.1007/s11136-019-02228-3 Brownlee, A., & Bruening, L. M. (2012). Methods of communication at end of life for the person with amyotrophic lateral sclerosis. Topics in Language Disorders, 32(2), 168-185. doi:10.1097/tld.0b013e31825616ef Chicago Citywide Literacy Council. (2019). Literacy Facts & Figures. Chicago Citywide Literacy Coalition. http://www.chicagocitywideliteracy.org/resources/facts-figures/. Cole, M.B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK, Inc. Connors, K., Mahony, L., & Morgan, P. (2019). Variation in assistive technology use in Motor Neuron Disease according to clinical phenotypes and ALS Functional Rating Scale Revised Score: A prospective observational study. NeuroRehabilitation, 44(2), 303-313. doi:10.3233/nre-182511 De-Bernardi-Ojuel, L., Torres-Collado, L., & Garca-de-la-Hera, M. (2021). Occupational therapy interventions in adults with multiple sclerosis or amyotrophic lateral sclerosis: A ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 25 scoping review. International Journal of Environmental Research and Public Health, 18(4), 1432. doi:10.3390/ijerph18041432 Driskell, L. D., York, M. K., Heyn, P. C., Sanjak, M., & MacAdam, C. (2019). A guide to understanding the benefits of a multidisciplinary team approach to amyotrophic lateral sclerosis (ALS) treatment. Archives of Physical Medicine and Rehabilitation, 100(3), 583-586. doi:10.1016/j.apmr.2018.05.002 Ferguson, C., Merga, M., & Winn, S. (2021). Communications in the time of a pandemic: The readability of documents for public consumption. Australian and New Zealand Journal of Public Health, 45(2), 116-121. doi:10.1111/1753-6405.13066 Fitzsimmons, P., Michael, B., Hulley, J., & Scott, G. (2010). A readability assessment of online Parkinsons disease information. The Journal of the Royal College of Physicians of Edinburgh, 40(4), 292-296. doi:10.4997/jrcpe.2010.401 Foley, G., Timonen, V., & Hardiman, O. (2014). Exerting control and adapting to loss in amyotrophic lateral sclerosis. Social Science & Medicine, 101, 113119. doi: 10.1016/j.socscimed.2013.11.003 Franits, L. E. (2005). Nothing about us without ys: Searching for the narrative of disability. American Journal of Occupational Therapy, 59(5), 577579. https://doi.org/10.5014/ajot.59.5.577 Hogden, A., Greenfield, D., Nugus, P., & Kiernan, M. C. (2013). Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care. Health Expectations, 18(5), 1769-1782. doi:10.1111/hex.12169 Horton K.D., Graham, S., Punjani, R., Wilt, G., Kaye, W., Maginnis, K., Webb, L., Richman, J., Bedlack, R., Tessaro, E., Paul Mehta, P. (2018) A spatial analysis of amyotrophic lateral ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS sclerosis (ALS) cases in the United States and their proximity to multidisciplinary ALS clinics. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 19(1-2), 126133, DOI: 10.1080/21678421.2017.1406953 Hsieh, S., Caga, J., Leslie, F. V. C., Shibata, M., Daveson, N., Foxe, D., Ramsey, E., Lillo, P., Ahmed, R. M., Devenney, E., Burrell, J. R., Hodges, J. R., Kiernan, M. C., & Mioshi, E. (2016). Cognitive and behavioral symptoms in ALSFTD: Detection, differentiation, and progression. Journal of Geriatric Psychiatry & Neurology, 29(1), 310. https://doi.org/10.1177/0891988715598232 Johnson, S., Alonso, B., Faulkner, K., Roberts, H., Monroe, B., Lehman, L., & Kearney, P. (2017). Quality of life perspectives of people with amyotrophic lateral sclerosis and their caregivers. American Journal of Occupational Therapy, 71(3). doi:10.5014/ajot.2017.024828 Koh, H. K., Brach, C., Harris, L. M., & Parchman, M. L. (2013). A proposed Health Literate Care Model would constitute a systems approach to improving patients engagement in care. Health Affairs, 32(2), 357367. https://doi.org/10.1377/hlthaff.2012.1205 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), 923. doi: 10.1177/000841749606300103 Lewis, M., & Rushanan, S. (2007). The role of physical therapy and occupational therapy in the treatment of amyotrophic lateral sclerosis. NeuroRehabilitation, 22(6), 451461. doi: 10.3233/nre-2007-22608 26 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 27 Lancioni, G. E., Singh, N. N., OReilly, M. F., Sigafoos, J., DAmico, F., Ferlisi, G., Zullo, V., Denitto, F., Lauta, E., Abbinante, C., Pesce, C. V. (2015). A basic technologyaided programme for leisure and communication of persons with advanced amyotrophic lateral sclerosis: Performance and social rating. Disability and Rehabilitation: Assistive Technology, 12(2), 145-152. doi:10.3109/17483107.2015.1104561 Maresca, G., Pranio, F., Naro, A., De Luca, R., Grazia Maggio, M., Scarcella, I., . . . Salvatore Calabro, R. (n.d.). Augmentative and alternative communication improves quality of life in the early stages of amyotrophic lateral sclerosis. Functional Neurology, 34(1), 35-43. Retrieved 2019. McLaughlin, G. (1969). SMOG Grading-a New Readability Formula. Journal of Reading, 12(8), 639-646. Retrieved June 1, 2021, from http://www.jstor.org/stable/40011226 National Health Literacy Mapping to Inform Health Care Policy (2014). Health Literacy Data Map. University of North Carolina at Chapel Hill. Retrieved June 1, 2021, from http://healthliteracymap.unc.edu/ Oh, J., & Kim, J. A. (2017). Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review. Journal of Clinical Nursing, 26(23-24), 4129-4152. doi:10.1111/jocn.13945 Oosthuizen, I., Dada, S., Bornman, J., & Koul, R. (2018). Message banking: Perceptions of persons with motor neuron disease, significant others and clinicians. International Journal of Speech-Language Pathology, 20(7), 756-765. ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 28 Paganoni, S., Karam, C., Joyce, N., Bedlack, R., & Carter, G. T. (2015). Comprehensive rehabilitative care across the spectrum of amyotrophic lateral sclerosis. NeuroRehabilitation, 37(1), 53-68. doi:10.3233/nre-151240 Readable. (n.d.). Readability formulas. Readable. https://readable.com/features/readabilityformulas/. Safeer S., & Keenan, J. (2005). Health literacy: The gap between physicians and patients. American Family Physician, 72(3), 463-468. Retrieved 2021, from https://www.aafp.org/afp/2005/0801/p463.html#:~:text=Health%20literacy%20is%20basic %20reading,at%20a%2010th%2Dgrade%20level. Scott, K., Sener, U., Shannon, R., Roche-Green, A., & Boylan, K. (2016). Nonpharmacologic management strategies in ALS #300. Journal of Palliative Medicine, 19(3), 333-334. doi:10.1089/jpm.2015.0361 Soofi, A. Y., Bello-Haas, V. D., Kho, M. E., & Letts, L. (2017). The impact of rehabilitative interventions on quality of life: A qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis. Quality of Life Research, 27(4), 845-856. doi:10.1007/s11136-017-1754-7 Statland, J. M., Barohn, R. J., Dimachkie, M. M., Floeter, M. K., & Mitsumoto, H. (2015). Primary Lateral Sclerosis. Neurologic Clinics, 33(4), 749760. https://doi.org/10.1016/j.ncl.2015.07.007 U.S. Department of Health and Human Services. (2020). Health literacy in healthy People 2030. Retrieved June 02, 2021, from https://health.gov/our-work/healthy-people/healthypeople-2030/health-literacy-healthy-people-2030 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS Appendix A Health Literature Care Model Visual 29 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS Appendix B Health Literacy Handout 30 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 31 Appendix C Modified CommunicateHealth Moderator Guide Moderator Guide questions to survey new resource guides Introduction Thank you for meeting with me today. I really appreciate any feedback you are willing to share with me. During this time, I will be asking you some questions about each resource guide. First, we will start with some basic questions about you. 1. How old are you? 2. How long have you had ALS? OR how long did your loved one have ALS? 3. What devices do you currently use? Questions about the Materials 1. One aspect of recreating these guides is to write them at a lower grade level so more people can accurately understand the content. With that in mind, how would you describe this content? a. Quality b. Content c. Readability i. Are there any specific words that you did not understand? 2. Organization/flow of information a. Did it make sense? b. How would you change it? 3. Any information that you think should be highlighted and called out? 4. What, if any, other resources have you been are using? 5. When would be a good time to introduce this information? 6. Any recommendations on how to present /disseminate the new guides to the public? 7. We are having the resource guides illustrated. Are there any specific icons/ illustrations you want to see? 8. Problem areas that stood out a. Are there any terms or phrases that are confusing? b. Poor word choices? Overall feelings How would you describe the tone of what you have just read? What, if anything, did you find to be intimidating or overwhelming in the content? In general, what recommendations do you have for making this content better? Any questions, comments, or concerns? Conclusion Thank you for taking the time to help us. Your feedback will directly help to revise the ALS resource guides. I greatly appreciate you talking time out of your day to talk to me. If you think of anything else, please do not hesitate to contact me. ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS Appendix D Finalized Resource Guide 32 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 33 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 34 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 35 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 36 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 37 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 38 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 39 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 40 ACCESSIBLE RESOURCES FOR INDIVIDUALS WITH ALS 41  ...

... Implementation of an Online Educational Module for Parents of Minority Children with ADHD and Autism Moriam Olorunoje, OTS 05/03/2021 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 DCE advisor: Colleen Wasemann, OTD, OTR A Capstone Project Entitled Implementation of an Online Educational Module for Parents of Minority Children with ADHD and Autism 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 Moriam Olorunoje, OTS Approved by: Advisor Name DCE Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date Running Head: ONLINE EDUCATIONAL MODULE FOR PARENTS 1 Implementation of an Online Educational Module for Parents of Minority Children with ADHD and Autism Moriam Olorunoje, OTS University of Indianapolis ONLINE EDUCATIONAL MODULE FOR PARENTS 2 Abstract This doctoral capstone experience aims to provide support for minority parents whose children have ADHD and autism diagnoses in the school setting through educational resources related to ASD and information regarding specialized programs. Helping minority parents whose children have ADHD and autism by providing invaluable education will enable early diagnosis, timely intervention, and active involvement of the parents in caring for their children. The sample for this study consisted of 10 participants (seven teachers, two staff members, and one parent) who were recruited using convenience sampling to participate in the online educational module. The online educational module included resources and videos on ASD and ADHD covering the definition, signs and symptoms, common concerns, and occupational therapy role in these diagnoses. A pre and post-measurement and satisfaction survey were used to assess the information of the online educational module and to determine the programs efficacy. The main findings of this study indicate that teachers improved in their overall knowledge of ASD and ADHD, ability to discuss with parents the signs and symptoms of ASD and ADHD, comfort level in seeking resources, understanding of the ASD Horizon program, and support cultural diversity. The research findings portray the need for cultural sensitivity toward parents to improve their state of awareness and knowledge of ASD and ADHD to help their children seek appropriate specialized programs within NYC DOE. Additionally, the participants perceived the online educational module as beneficial to bring awareness to future parents and teachers. Keywords. Autism Spectrum Disorder, Attention Deficit Hyperactive Disorder, Minority Parents, Cultural Competence, Culture ONLINE EDUCATIONAL MODULE FOR PARENTS 3 Introduction Disorders may alter the lives of people in numerous ways both directly and indirectly on the social environment of patients. There are cases where the patients have to live with a condition for the rest of their lives or several years and, the people around them must adapt to the new norm. Parents are the primary caregivers of their children and this forces them to adapt to the changes in their family and life when they have children suffering from Attention Deficit Hyperactive and Autism Spectrum Disorders. These disorders affect the ability of the children to participate within their environment from a young age; it requires active involvement of parents to ensure the children enjoy their childhood and grow healthy into their youth and adult life. Many minority families do not understand the best way to take care of children with ADHD and autism due to cultural perceptions, life changes, and late diagnosis. Helping minority parents whose children have ADHD and autism enables early diagnosis, timely intervention, and tailors the involvement of the parents in caring for their children. Therefore, healthcare professionals need to be culturally responsive to minority parents to provide appropriate care for the children and improve their quality of life. In the present globalized society, it is common for people of different nationalities, languages, ethnicity, and cultures to live in the same neighborhood. The diversity has increased the number of cultures that teachers encounter in classrooms as they interact with students with different ethnic backgrounds, cultures, and lifestyles. Hence, the integration of diversity is necessary to promote cultural competence to provide an education that meets the needs of culturally diverse students. Cultural competence is essential in communities and institutions. It is the cultural attitude or sensitivity of an individual, his or her cultural knowledge, skills, and awareness (Kaihlanen, Hietapakka, & Heponiemi, 2019). Cultural competence enhances the ONLINE EDUCATIONAL MODULE FOR PARENTS 4 academic achievement of students, increases their understanding of social injustices, and improves their knowledge of other cultures but also requires teachers to be culturally competent and frequently carry out self-assessments. Literature Review Cultural Competence The U.S. Department of Health and Human Services (2019) explains that culturally competent institutions maintain individual and organizational perspectives, behaviors, policies, and attitudes that promote effective and positive interactions with diverse cultures. The concept of cultural competence first became popular in social work and healthcare during the 1980s and increasingly become relevant in education in the recent past (Howard, 2019). Culturally competent people understand that there are numerous cultures around them; they are knowledgeable about those cultures, understand their influence on different things around them, and recognize their importance in contributing to a better society. Diversity represents multiple areas and levels of society, ranging from schools to work environments. The increasing diversity of students in public schools exposes faculty members to students from various cultural and linguistic backgrounds, and this makes it necessary for the staff to be culturally sensitive to successfully meet the educational needs of all students. Therefore, a pivotal role is necessary for the incorporation of cultural competence in educational institutions. Improving Educators View of Cultural Competence Educators, such as teachers, need to understand the importance of cultural competence in their daily activities. Howard (2019) explains that teachers express their personalities and project their inner souls to their students during their lessons. Since the lessons reflect on their inner self, they need to develop their cultural competence to project a clear image to the students, and that ONLINE EDUCATIONAL MODULE FOR PARENTS 5 also enables them to understand and appreciate diverse cultures (Howard, 2019). They should understand the communities where the students come from and their home lives and include this content in the classrooms to affirm the values and identities of the students (Byrd, 2016). Developing cultural competence enables educators to understand if they subconsciously or consciously have uninformed perceptions of the culturally diverse students, negative perception of the families of the students, and different views of low-income communities (Howard, 2019). It helps them to understand whether they are making the right decisions and are teaching based on an informed platform that treats all students the same way irrespective of their cultural differences. This plays an extremely pivotal role for educators to understand various cultures perspectives on ASD and ADHD by being culturally competent to help advise parents to advocate for appropriate resources for their child. Sociocultural Factors in ADHD & Autism Care The prevalence of ADHD among children and youth is approximately 5% which makes it a concern worldwide (Vijverberg et al., 2020). ADHD is one of the most common neurodevelopmental disorders in adolescents and children and is characterized by inappropriate impairments such as disorganization, inattention, impulsiveness, and hyperactivity (Vijverberg et al., 2020). Autism spectrum disorders rank as one of the most stressful childhood developmental disorders and are characterized by difficulty with social communication and emotional expression, restricted and repetitive behaviors, and motor abnormalities (Gray, 2006). It affects the daily functioning of the patients making it necessary for parents to be on constant alert for the children to prevent them from harming themselves. This can be an overwhelming task that prevents the parents from paying attention to their family and household duties. The common concerns for children who have ADHD and autism include diagnosis and treatment, mental ONLINE EDUCATIONAL MODULE FOR PARENTS 6 health problems, appropriate activities, and making friends (Vijverberg et al., 2020). The parents need to understand these concerns and the best way of ensuring their children enjoy their childhood while also acquiring the necessary skills for personal development. The optimal way for the minority parents to understand them is through the help of teachers who see their childs daily characteristics in the classroom. Additionally, through the collaboration of minority parents and healthcare professionals to appropriately identify the needs and characteristics of ASD and ADHD, the parent will likely seek the right services to facilitate a happy childhood and gaining the necessary skills for personal development. A study conducted by AlAzzam & Daack-Hirsch (2015) completed a phenomenological study with a sample of Arab mothers found stigma as one of the main concerns to seeking mental health services for children with ADHD (Slobodin & Masalha, 2020). For example, patients and families explained the pressures from society to refrain from seeking treatment, fear that it can affect job opportunities, and the fear of the unknown (Slobodin & Masalha, 2020). Immigrant ethnic minority parents show concerns that their childrens language and social problems may impede appropriate screening of criteria of autism. Slobodin & Masalha (2020) found that African American parents believed their childs condition was a behavior problem or a characteristic that the child may grow out of, while on the contrary White parents refer to their childs signs and symptoms as a medical syndrome. Therefore, health care professionals have difficulty screening for ASD in children of ethnic minority groups because of the combination of social and communication issues that may be attributed to their ethnic background or ASD (Begeer, Bouk, Boussaid, Terwog, & Koot, 2009). Minority culture influences the ability of parents to seek help for their children. Cultural aspects influence the thoughts, behavior, and interaction between the parents and medical ONLINE EDUCATIONAL MODULE FOR PARENTS 7 professionals (Hall et al., 2017). The perception of minority parents towards the developmental milestones of their children, language, communication, and social behavior also varies among the minority culture compared to the majority (Hall et al., 2017). This limits their perception of the health of their children. Minority parents may think that the children are going through a developmental phase that will overcome as they grow, and this contributes to the late diagnosis of the disorders. The cultural disparity between the minority and majority races influences problem recognition, service selection, and the quality of treatment (Slobodin & Masalha, 2020). This makes it necessary to educate parents on the importance of careful observation of their children and reporting any suspicions they may have about their health. It also shows the importance of cultural competence during communication with minority communities in a healthcare setting (Slobodin & Masalha, 2020). Cultural competence in communication with parents helps the healthcare professionals understand the parents perception about the disorders and the likely response and adherence to the treatment schedules as advised by the healthcare professionals. It also helps to eliminate any stereotypes the parents may have or fear concerning children with autism and ADHD within their cultural settings. Screening & Diagnosis Factors Early intervention and treatment are important for autism, diagnosis is only confirmed after children attain three years and the children of minority parents are likely to get a diagnosis in later years compared to Caucasian children (Hall et al., 2017). The differences in diagnosis also reflect the undertreatment of Latino and African-American children; the inability of the minority parents to identify that their children are suffering from the disorder at the right time (Coker et al., 2016). Early diagnosis of the disorder is important for the minority parents because it eases their journey in taking care of the children with autism and ADHD. Other factors that contribute ONLINE EDUCATIONAL MODULE FOR PARENTS 8 to the disparities in the diagnosis of ADHD and autism among the minority children include minimal educational and financial resources, the lack of quality healthcare, difficulty in accessing health information, and cultural barriers (Hall et al., 2017). The minority communities may believe that the symptoms of autism and ADHD can be treated using cultural methods or are a result of other cultural practices (Hall et al., 2017). Some cultures also shame people whose children are diagnosed with autism and ADHD. In such cultures, parents are likely to hide their children to prevent the shame that will befall them if the neighbors realize that they have a child with either of the disorders. The limited access to health information may make the parents think of it as a different disease that can be easily treated or that comes with early age and the lack of financial resources also prevents parents from seeking help as they have to focus on other basic needs such as food and shelter. Helping parents whose children suffer from ADHD and autism enables them to cope with the demanding situation and understand their involvement. The help should start with identifying the steps that parents take towards recognition until the eventual diagnosis and management of the disorders. The steps that parents may undergo in identifying the disorders include developing an image of the difference, questioning the signs, identifying that something is wrong, and being convinced of the disorder (Gentles et al., 2019). Teaching parents about the stages will enable them to understand and seek interventions within an appropriate time. It will ensure they stay connected with the medical professionals to inform them of any changes relating to the steps they are in. Parents encounter emotional difficulties in accepting that their children are suffering from autism and medical professionals can improve their ability to get involved in the care for their children (Gentles et al., 2019). ONLINE EDUCATIONAL MODULE FOR PARENTS 9 Other difficult areas for the parents of children with ADHD and autism are adaptation and communication (Hall et al., 2017). The parents have to adapt to the new way of life and learn how to communicate effectively with the child. Assisting the minority parents helps to support and tailor their interventions and plan family-centered care pathways (Gentles et al., 2019). The minority parents may not understand the best ways to take care of their children with ADHD and autism and the health care professionals can help them deal with this. The health care professionals have the knowledge and experience of the best way to take care of the patients and can collaborate with the parents to ensure that the children lead a fulfilling life while at home. Besides the guidance and advice to the parents, the medical professionals can connect the parents to resources and support groups that help them to effectively parent children with ADHD and autism (Hall et al., 2017). Support groups are essential in making parents understand that there are others in similar situations. It allows them to share information and ideas on the best ways to take care of their children. Theoretical Framework The Coalition of Occupational Therapy Advocates for Diversity (COTAD) Framework is the model used to discuss how cultural competence can be a proponent for underrepresented populations in a public school setting to increase knowledge and awareness(Coalition of Occupational Therapy Advocates for Diversity, 2019). The Coalition of Occupational Therapy Advocates for Diversity (COTAD) framework uses a multi-faceted approach including individual, group, and population levels about issues of diversity and inclusion. Each structural level from the COTAD framework is intertwined to immerse cultural competence/sensitivity in training and education; promote and advocate occupational therapy in underrepresented ONLINE EDUCATIONAL MODULE FOR PARENTS 10 communities. This framework will help guide incoming personnel into the school system to understand cultural humility, cultural differences, equity, cultural history, and social justice. In addition, I will use the Kawa model because it recognizes the importance of culture, which makes it essential in providing holistic treatment to different clients. Its development is based on the Japanese culture that provides evidence on the possibility of tailoring occupational therapy models to suit diverse cultures and promote holistic outcomes in practice (Duncan, 2013). In figure 1. the circles in this image represent the rocks which symbolize the barriers of cultural competence. The rocks depict hindrances that can affect parents from accessing appropriate services for their children in public schools. The river metaphor serves as the relationship of individuals or collective social groups, quality of occupations, and contexts (Cole, 2018). In this image, removal of the rocks does not improve the barriers that come with cultural competence but developing a plan for the rocks will facilitate the water to flow. The emotional issues focus on the teachers being culturally sensitive to the parents needs to create clientcentered care with a therapeutic relationship. The social environment and physical environment are essential for teachers and parents to collaborate to address the childs needs. The childrens current social and physical environment are vital in the success of their educational needs to be addressed effectively. The Kawa model supports the integration of cultural competence within the school system because it visualizes an individual as part of a larger whole that includes the community, family, economic, political, and sociocultural environments of the individual (Creek, Lougher, & Bruggen, 2008). The students in a public school setting are observed as family, community, and sociocultural environments of a person. The inclusion of culture in the Kawa model expands the approaches that occupational therapists can use in improving the well-being of clients. The Kawa model views occupational therapy as an opportunity to create harmony ONLINE EDUCATIONAL MODULE FOR PARENTS 11 between an individual and his or her personal and environmental factors with the belief that this harmony will improve well-being (Wada, 2011). Conclusion This literature review discusses the role of cultural competence in helping minority students enrich their education similar to their nonminority counterparts. The purpose of this capstone experience was to provide support for minority parents whose children have ADHD and autism diagnoses in the school setting through educational resources related to ASD and information regarding specialized programs. The wide diversity of cultures and ethnicities within the educational institutions requires the necessity for staff members to adapt culturally competent tactics to successfully meet the minority families needs. Method Organization The NYC Department of Education (DOE) is the largest system of public schools in the United States (New York City Dept of Ed [NYC DOE], 2021). About 1.1 million students attend Districts 1-32 which consists of regional school sites located in the students community that provide general education, or at District 75 school sites that provide specialized services for students who have special needs (NYC DOE, 2021). The annual budget for the NYC public school system is $25.9 billion. An estimate of 2000 occupational therapists employed in the NYC school system and about 56,000 students are mandated to receive occupational therapy services to participate in everyday life activities to address areas of self-care activities, sensorimotor tasks, and classroom responsibilities (NYC DOE, 2021). Program Description ONLINE EDUCATIONAL MODULE FOR PARENTS 12 William T. Davis is an elementary school that serves students prekindergarten through 5th grade. According to the NYC DOE (2021), the school population is 392 students with a minority enrollment of 94% of the students, with the majority of the school population categorized under the Black race. At the initial meeting, Yenny Coral, Occupational Therapist of District 31-R031 at William T. Davis, discussed how there is a need to educate minority parents with children of Autism spectrum disorder on the various specialized programs that the NYC DOE offers to students. The array of programs that the NYC DOE provides are ASD Nest, ASD Horizon, and ACES program. The classrooms that are already in place in the school include student: teacher ratio of 8:1, 12:1, and Integrated Co-Teaching. Most minority parents are unaware that their community school offers programs that will be beneficial to their children. The North Shore of Staten Island differs from South Shore due to more diversity, lower cost of living, and increased poverty rate in the community. The South Shore of Staten Island entails a majority white population and wealthier residents. This school is located on the North Shore of Staten Island where there is a lack of students receiving occupational therapy services from the Horizon program. However, the children that are served in the Horizon program are from the South Shore of Staten Island because of the awareness, resources, and parent advocates. As previously discussed, minority parents do not want a label placed on their child due to the stigma, and this may be caused by the lack of information provided to families from their elementary school. Minority parents are often unaware of resources and activities around the school that can promote a healthy, developmental transition for their children. Through discussion and collaboration with Yenny Coral and other staff members, it was decided that the program should include education to both staff members and minority parents about the availability of the ONLINE EDUCATIONAL MODULE FOR PARENTS 13 specialized programs including how to apply. Additionally, for parents to recognize the benefit of the ASD programs, informational handouts on signs and symptoms of ADHD and ASD would be beneficial for parents to assist in identifying the childs developmental needs. Also, a parent resource was created to assist parents with strategies to help their child self-regulate and cope at home. Implementation A needs assessment was conducted through an informal conversation with the site mentor, Yenny Coral, OTR, and Tina Durando, senior occupational therapist of the ASD program, and through ongoing observations to determine any gaps at the site. The project will focus on providing educational resources on various diagnoses and specialized programs for minority parents and staff members of William T. Davis elementary school. These educational resources can be accessed as needed with the goal to improve minority parents confidence and occupational participation to access the necessary information to help their children with ASD and ADHD. Yenny Coral and Tina Durando identified that the parents and teachers of prekindergarten through first-grade students would be the best fit for these educational online modules because they are unaware of the specialized program the school offers. The school staff members will also benefit from educational videos and resources about ASD and ADHD and specialized programs. The online module included educational resources and videos on ASD and ADHD covering the definition, signs and symptoms, common concerns, and occupational therapy role in these diagnoses. In addition, a pamphlet discussing the different specialized programs for ASD and a strategies sheet on coping skills and executive functioning skills. The following objectives were developed to guide the current project of online educational modules at William T. Davis: ONLINE EDUCATIONAL MODULE FOR PARENTS 14 1. Create a pamphlet/resources that increases awareness for minority parents focused on ADHD and Autism. 2. Create a video that increases minority parents knowledge of Autism and ADHD to provide necessary skilled services for their children. 3. Create a pamphlet on the specialized programs for ASD (ASD Nest & ASD Horizon) 4. Create resources on coping skills and executive functioning skills that improve minority parents knowledge in the most optimal care for their child. The overall goal was to improve awareness and confidence to help minority parents whose children have Autism and ADHD to maximize the childs occupational performance in a public school setting. These objectives include resources and videos relating to increasing knowledge of developmental disorders and specialized programs of minority parents. The videos focused on how to navigate the numerous specialized programs offered in NYC DOE, various developmental disorders, and family resources in the community to provide support for minority parents with children with ASD. The goal of these resources was to increase the knowledge, awareness, and support of minority families with children of ASD. Capstone Experience Schedule Weeks 1 4 Complete needs assessment with site mentor, Yenny Coral, and ASD SIT, Tina Durando Collaborate with the site mentor on goals and objectives Development of the handouts on ASD Weeks 4 6 ONLINE EDUCATIONAL MODULE FOR PARENTS 15 Development of the handouts on ADHD, coping strategies for kids, and executive functioning skills for kids Development of 2 short videos on ASD & ADHD Development of the ASD Family Resource Guide (ASD Nest & ASD Horizon) Weeks 7 9 Each educational resource was reviewed by the site mentor Administer pre-survey and post-survey to teachers Administer satisfaction survey to site mentor and ASD SIT Each week consists of the creation of educational resources or a video for the teachers. Upon completion of each online educational resource, there will be edits made upon the sites mentor feedback and assessment. The teachers will evaluate the videos through a pre and postsurvey and provide feedback on delivery, the relevance of information, and the impact it had on viewers. After a thorough and in-depth evaluation of the site needs, the project developer will develop educational resources to be emailed to teachers and parents to evaluate the impact of the program. The teachers and the parents will review and watch online educational modules to explore developmental disorders (ASD and ADHD) and the specialized programs that are offered in this elementary school. Outcome Measurement The project developer utilized a satisfaction survey including a Likert scale and openended questions to determine the programs efficacy by receiving feedback from the staff to discover the strengths and weaknesses and the improvements that need to be made. The staff members should be satisfied with the educational resources that can be provided for the parents. Di Palo (1997) suggests that satisfaction is one of the integral outcome measures for health care; ONLINE EDUCATIONAL MODULE FOR PARENTS 16 the concept of satisfaction applies to all populations and can be expressed in a personal aspect of the individual his or her experience. Although measures such as effectiveness and efficiency are significant, satisfaction is considered to be the only 1 of 3 above that pertains to the affective reaction that allows the patient to perceive their health care services. Satisfaction for health care is a longstanding measure in the social sciences and consumer research (Di Palo, 1997). To understand the impact of healthcare, it is essential to take into consideration the satisfaction of patients. However, using a rating satisfaction survey was an excellent outcome measure to understand the staff members learning on the educational online modules. The project developer used a pre and post measurement of the survey to assess the information (ability to discuss with parents about ASD and ADHD, overall knowledge of ASD and ADHD, comfort level in seeking resources, school educational materials regarding the Horizon program, supporting cultural diversity, and understanding of the ASD Horizon program) before starting the survey and to gather supplement data once the survey was completed after reviewing the educational online module. The pre-post measurement is an important study design for program evaluation. This would allow the teachers to gain a better understanding and insight into the significance of the educational resources for the parents. The teachers would share the resources with the parents on their childs Google classroom or email/print the resources directly to the parents. Participants Seven participants were recruited using convenience sampling through professional contacts from the site mentors workplace. Inclusion criteria consisted of individuals: (a) teachers that taught pre-kindergarten first grade, (b) fluent in English, and (c) have access to a computer/ smartphone with the internet. Three participants were recruited using convenience ONLINE EDUCATIONAL MODULE FOR PARENTS 17 sampling to participate in the online educational modules to rate the satisfaction, relevance, and utilization of the program through a satisfaction survey. One parent was requested to observe an online training of the educational resources and provide feedback on the knowledge or skills they learned. Although this study was exempt from the process of being reviewed by the Institutional Review Board at the University of Indianapolis because it was not human subject research, the projects site required Institutional Review Board approval to release pre and post-measurement for parents. Due to the time constraint of the late IRB notice, it was not feasible to complete the parent pre and post-measurement component for the project. Data Analysis An online survey platform, Qualtrics, and Google Forms were used to administer the survey, collect data, and analyze the data. The Qualtrics software and the Google Forms were used to analyze the item response data of the seven teachers and the three participants, respectively. The descriptive statistics help analyze the sample size and percentage of participants item response data. The initial items on the pre and post-survey were refined for better clarity and wording for the teachers. The participants completed the survey in their respective locations. Results The seven teachers participated in the pre-survey and, six teachers participated in the post-survey. One teacher did not complete the post-survey after reviewing the educational resources, indicating the dropout rate. The teachers represented various school grades of prekindergarten through first grade. All teachers met the inclusion criteria for the study. The data from the teachers pre-survey was collected from teachers existing knowledge of children with ASD and ADHD. Results from the pre-survey are presented in Appendix B, ONLINE EDUCATIONAL MODULE FOR PARENTS 18 Figure B1. In Appendix B, the teachers pre-survey (Figure B1) was compared to Figure B2, the teachers post-survey indicating the findings. Ability to Discuss with Parents ASD and ADHD Four out of seven participants were somewhat satisfied with their ability to discuss with parents the topics related to ASD and ADHD. Overall Knowledge of ASD and ADHD Approximately 57% of the teachers rated their overall knowledge of ASD and ADHD as neutral. Comfort Level in Seeking Resources Three out of seven participants were somewhat satisfied in seeking resources for parents related to ASD and ADHD. School Educational Materials Regarding the Horizon program Approximately 43% of the teachers were somewhat satisfied with how they feel the schools educational materials about the Horizon program. Support Cultural Diversity About 57% of the teachers were somewhat satisfied with the existing educational resources to support the cultural diversity of the community. Understanding of the ASD Horizon program About 57% of the teachers were somewhat satisfied with the ASD Horizon program that the school offers. The data from the teachers post-survey was collected from teachers skills and knowledge after reviewing the educational resources. The most valuable knowledge the participants gained was being able to differentiate the two specialized programs, ASD Horizon and the ASD Nest, ONLINE EDUCATIONAL MODULE FOR PARENTS 19 resources for support groups, and understanding ASD and ADHD. Results from the post-survey are presented in Figure 3. Ability to Discuss with Parents ASD and ADHD Four out of six participants were somewhat satisfied with their ability to discuss with parents the topics related to ASD and ADHD after reviewing the educational online module. At a mean of 4.00, the teacher's responses to the educational resources show that they are effective. This is crucial in making the parents aware of the necessity of understanding the scope and nature of ASD and ADHD. Overall Knowledge of ASD and ADHD At a mean of 4.17, the knowledge conveyed to the teachers shows that the educational resources are effective. Comfort Level in Seeking Resources Four out of six participants were somewhat satisfied with their ability to seek resources for parents related to the educational online module. At a mean of 4.00, teachers perceived to be satisfied under this category before and after reviewing the resources. School Educational Materials Regarding the Horizon program About 33% of the teachers are very satisfied with the resources while 50% of participants perceived the resources as being neutral. Support Cultural Diversity At a mean of 4.33, teachers are very satisfied that the educational resources support cultural diversity within the community. Understanding of the ASD Horizon program ONLINE EDUCATIONAL MODULE FOR PARENTS 20 About 50% of participants rated somewhat satisfied with understanding the ASD Horizon program that the elementary school offers. This shows that the ASD Family Resource Guide was an essential piece to allow the teachers to be informed and knowledgeable with the resources given. The three respondents completed the satisfaction survey after reviewing each educational resource online. Participant #1 suggested that the program should offer the Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactive Disorder (ADHD) educational resources in other languages to enhance the content for future parents. Participant #2 indicated that the information was concise, organized, informative, and well presented. Participant #3 revealed that the online educational resources will be shared with other parents in need of this information and thought the videos were interactive to the viewers. The participants suggested that these educational resources will be shared with future parents and teachers and will be beneficial to bring awareness for parents. Discussion The purpose of this doctoral capstone project was to provide support for minority parents whose children have Autism diagnoses and ADHD in the school setting. This was the first online educational module created at this elementary school with a focus on cultural competence. Notably, the online educational module offered a detailed format of various informative resources that will provide engagement between the teachers, parents, and the school assessment team in dealing with minority children of ASD and ADHD. The positive effects of this program reveal that communication between teachers and parents is beneficial for children's transitions in the school setting (Stoner et al. 2007). ONLINE EDUCATIONAL MODULE FOR PARENTS 21 The main findings of this study indicate that teachers improved in their overall knowledge of ASD and ADHD, ability to discuss with parents the signs and symptoms of ASD and ADHD, comfort level in seeking resources, understanding of the ASD Horizon program, and support cultural diversity. The teachers in this study showed that the program was effective by learning more about developmental disorders, ASD, and ADHD. In particular, teachers believed after reviewing the online educational module they can discuss topics related to ASD and ADHD with parents. Additionally, the majority of teachers felt more comfortable and confident in seeking resources for parents after the online module. The majority of the teachers have a better understanding of the ASD Horizon program that this elementary school offers students with autism. The literature that aligns with this finding, it is essential for teachers and educators to build a long-lasting relationship with parents to discuss pertinent information related to their childs signs and symptoms, and seek appropriate services (Slobodin & Masalha, 2020; Hamed, Kauer, & Stevens, 2015). The research findings portray the need for cultural sensitivity to parents state of awareness and knowledge of ASD and ADHD to help their children seek appropriate specialized programs within NYC DOE. As a result, this will empower the parents to seek early identification and diagnosis to address daily challenges that they may exhibit with their child. Waite (2015) supports improving cultural competence in communications during the assessment, diagnosis, and early treatment in underrepresented communities to determine the childs needs. This was implemented by educational infographics that were developed in English and Spanish languages to allow accessibility for English and native Spanish speakers. The majority of the teachers were very satisfied with how the educational module supported the cultural diversity of their community. Furthermore, culturally sensitive interventions with parents and teachers can ONLINE EDUCATIONAL MODULE FOR PARENTS 22 help address gaps in knowledge about ASD and ADHD signs and symptoms, and treatment (Slobodin & Masalha, 2020; Shata, Abu-Nazel, Fahmy, & El-Dawaiaty, 2014). This study provides a detailed account of how teachers' understanding improved of autism and Attention Deficit Hyperactive disorders, furthering the knowledge of teachers' experience to assist future parents. The teachers perception improved from the pre and post-measurement due to the information provided to increase understanding of both developmental disorders and the services currently available at the school. Most of the teachers were better informed and knowledgeable of the diagnoses, treatment, strategies, and services available to students. As a result, teachers have shared the educational resources with the parents and utilize coping strategies and executive functioning skills for their students. In the satisfaction survey, the participants found the educational resources as very satisfying and relevant for the parents to learn and benefit from. They indicated it will be shared online and posted on google classroom for faculty members and future parents. Gentles et al. (2019) found that as parents or caregivers come to understand their child has autism, there were increased levels of motivation and engagement for their children. Consequently, one of the limitations of this study was the inability to obtain data on the parent's pre and post-survey of the online educational module. This study was exempt from the process of being reviewed by the Institutional Review Board at the University of Indianapolis because it was not human subject research, however, the projects site required Institutional Review Board approval to release pre and post-measurement for parents. Due to the time constraint of the late IRB notice, it was not practical to complete the parent pre and postmeasurement for the project. The sample size was small which impacted the ability to create external validity, unable to generalize it to other populations. Research using a larger sample ONLINE EDUCATIONAL MODULE FOR PARENTS 23 with more available services at this institution would be necessary to establish the significant effect of the program through the insight of the teachers and parents. Also, the project developer communicated electronically via email, which reduced the amount of information obtained from the participants. To account for the attrition rate, one teacher completed the pre-survey but did not complete the post-survey after reviewing the educational resources. A recommendation for future study is to explore the experiences of minority parents of children with ASD who are starting elementary school. Also, further research could explore the experiences of parents of children with ASD and parents of children with other disabilities. Implications Implications for future research include completion of the parent's pre and post-survey to understand the knowledge gained and seek appropriate specialized services for minority children with ASD and ADHD. Inclusion of the parents and teachers pre and post-survey of the educational resources will determine face validity, whether the test items measure what the test is intended to measure (Taylor, 2017). The main findings implicate strategies that occupational therapy practitioners can use to improve parent education and seek appropriate services for children. An occupational therapist practitioner needs to consider minority parents' feelings and values about their children with ASD starting school. A childs diagnosis with ASD can impact parents' difficulty in determining the appropriate school placement for their child due to stigma, isolation, and fear of bullying (Connolly & Gersch, 2016). A practitioner can provide parent education related to the school system, specialized programs, and placement options. Additionally, an occupational therapist should be culturally sensitive to support minority parents with their childs needs. The school assessment staff including the occupational therapist should meet with parents before and after the transition to communicate issues and strategies to support ONLINE EDUCATIONAL MODULE FOR PARENTS 24 the childs needs (Connolly & Gersch, 2016). This study provides relative information to educate, foster a culturally conducive environment, and increase public awareness to minority parents with children with ASD and ADHD. This will allow minority parents to be confident and actively engaged in their children's lives to maximize their occupational performance in a public school. Conclusion This doctoral capstone experience drew on the knowledge and skills of teachers to determine if the educational resources related to ASD and the information regarding specialized programs were necessary for the school and the parents. The findings revealed that teachers improved their overall knowledge of ASD and ADHD, ability to discuss with parents the signs and symptoms of ASD and ADHD, comfort level in seeking resources, understanding of the ASD Horizon program, and supporting cultural diversity. Although the project developer completed the teachers pre and post-measurement, further development is necessary to understand the experiences of minority parents in seeking appropriate specialized programs within NYC DOE for their child. ONLINE EDUCATIONAL MODULE FOR PARENTS 25 References Begeer, S., Bouk, S. E., Boussaid, W., Terwogt, M. M., & Koot, H. M. (2009). Underdiagnosis and referral bias of autism in ethnic minorities. Journal of Autism & Developmental Disorders, 39(1), 142148. doi.org/10.1007/s10803-008-0611-5 Byrd, C. M. (2016). Does culturally relevant teaching work? An examination from student perspectives. Sage Open, 6(3). doi.org/10.1177/2158244016660744 Coalition of Occupational Therapy Advocates for Diversity. (2019). About COTAD. https://www.cotad.org/about Cole, M. B. (2018). Group dynamics in occupational therapy (5 ed.). Thorofare, NJ: Slack th Incorporated. Coker, T. R., Elliott, M. N., Toomey, S. L., Schwebel, D. C., Cuccaro, P., Emery, S. T., ... & Schuster, M. A. (2016). Racial and ethnic disparities in ADHD diagnosis and treatment. Pediatrics, 138(3). doi.org/10.1542/peds.2016-0407 Connolly, M., & Gersch, I. (2016). Experiences of parents whose children with autism spectrum disorder (ASD) are starting primary school. Educational Psychology in Practice, 32(3), 245 261. https://doi.org/10.1080/02667363.2016.1169512 Creek, J., Lougher, L., & Bruggen, H. V. (2008). Occupational therapy and mental health. London: Churchill Livingstone. Duncan, E. A. S. (2013). Foundations for practice in occupational therapy. Churchill Livingstone: Elsevier Gentles, S. J., Nicholas, D. B., Jack, S. M., McKibbon, K. A., & Szatmari, P. (2019). Coming to understand the child has autism: A process illustrating parents evolving readiness for engaging in care. Autism, 24(2), 470-483. doi.org/10.1177/1362361319874647 ONLINE EDUCATIONAL MODULE FOR PARENTS 26 Gray, D. E. (2006). Coping over time: The parents of children with autism. Journal of Intellectual Disability Research, 50(12), 970976. doi.org/10.1111/j.1365-2788.2006.00933.x Hall, H. R., Fruh, S., Zlomke, K., & Swingle, H. (2017). A qualitative analysis of the experiences of minority parents of children with autism spectrum disorder. Advances in Neurodevelopmental Disorders, 1(2), 79-88. doi.org/10.1007/s41252-017-0015-7 Howard, T. C. (2019). Why race and culture matter in schools: Closing the achievement gap in America's classrooms. New York, NY: Teachers College Press. Kaihlanen, A. M., Hietapakka, L., & Heponiemi, T. (2019). Increasing cultural awareness: qualitative study of nurses perceptions about cultural competence training. BMC Nursing, 18(1), 1-9. Slobodin, O., & Masalha, R. (2020). Challenges in ADHD care for ethnic minority children: A review of the current literature. Transcultural psychiatry, 57(3), 468-483. doi.org/10.1177/1363461520902885 Stoner, J. B., M. E., House, J. J., Jones Bock, S. (2007). Transitions: Perspectives from parents of young children with autism spectrum disorder (ASD). Journal of Developmental & Physical Disabilities, 19(1), 23-39. https://doi.org/10.1007/s10882-007-9034-z Taylor, R. (2017). Kilehofners research in occupational therapy: Methods of inquiry for enhancing practice. Philadelphia, PA: F.A. Davis Company. U.S. Department of Health and Human Services (2019). Cultural competence. Retrieved from https://www.hhs.gov/ash/oah/resources-and-training/tpp-and-paf-resources/culturalcompetence/index.html Vijverberg, R., Ferdinand, R., Beekman, A., & van Meijel, B. (2020). Unmet care needs of children with ADHD. Plos one, 15(1). doi.org/10.1371/journal.pone.0228049 ONLINE EDUCATIONAL MODULE FOR PARENTS 27 Wada, M. (2011). Strengthening the Kawa model: Japanese perspectives on person, occupation, and environment. Canadian Journal of Occupational Therapy, 78(4), 230-236. Waite, R. (2015). Culturally competent approaches to assessing ADHD in African American adults and overcoming cultural issues with patients and families. Journal of Clinical Psychiatry, 76. http://doi.org/10.4088/JCP. 13008tx3c ONLINE EDUCATIONAL MODULE FOR PARENTS Appendix A 28 ONLINE EDUCATIONAL MODULE FOR PARENTS Appendix B Figure B1 Figure B2 29  ...

... 1 Title: Enhancing the Emotional Literacy in Elementary-Aged Children: Mitigating ACE-related Negative Outcomes Tara Nastoff 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: Colleen Wasemann, OTD, MS,OTR 2 A Research Project Entitled Title: Enhancing the Emotional Literacy in Elementary-Aged Children: Mitigating ACE-related Negative Outcomes 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 Names Titles Approved by: Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date 3 Abstract Introduction: Long-term, negatives effects on health are linked to adverse childhood experiences (ACEs) (CDC, 2020). Chronic toxic stress caused by ACEs may lead to complex trauma, which in children can manifest as increased anxiety, difficulty selfregulating, limited positive coping skills, and difficulty with social skills and communication (van der Kolk, 2003). These are skills that can impact a childs performance in their occupations of education, play, social participation, rest and sleep, and leisure (AOTA, 2020). An occupational therapy directed Doctoral Capstone Experience (DCE) addressing the negative mental health implications of ACEs for children will add to the body of literature supporting the role of occupational therapists in preventing or preventing and addressing the negative outcomes linked to ACEs. Theoretical Framework: The occupation-based model (OBM), Ecology of Human Performance (EHP); along with the Psychodynamic frame of reference (FOR), and Daniel Golemans Theory of Emotional Intelligence guided professional reasoning and program development throughout the DCE. Methods: The culmination of this 14-week Doctoral Capstone project is an implementable, occupational therapy driven, emotional literacy program for children at a local community center aimed to improve the childrens knowledge of their own emotions, how their emotions impact others, and coping mechanisms to aid in selfregulation. There are six total program sessions, with one session completed each week of program implementation. Results: All three participants showed an increase in total GAS score following program completion. The Youth Directors' satisfaction with program structure, duration, materials ranged from very satisfied to extremely satisfied. The following overall program themes were found: Positive Participant Reactions, Difficulty with Written Tasks and Attention to Task, and Remembering Visual/Kinesthetic Activities. Conclusions: There is a need to address and mitigate ACE-related negative outcomes in children from marginalized and economically disadvantaged groups. Addressing how ACEs and complex trauma impacts a childs participation in their occupations is within Occupational Therapys scope of practice. Keywords: emotional literacy, adverse childhood experiences, toxic stress, complex trauma, occupational therapy, and health and wellness 4 Enhancing the Emotional Literacy in Elementary Aged Children Mitigating ACE-related Negative Outcomes Lasting, negative effects on health, including several physical and psychiatric health conditions, health risk behaviors, and socioeconomic challenges are linked to adverse childhood experiences (ACEs) (CDC, 2020). Potentially traumatic events that individuals incur before the age of 18 are defined as ACEs (Child Welfare Information Gateway, 2019). Traumatic events include but are not limited to various types of abuse, neglect, and household challenges (Felitti et al., 1998). An accumulation of these childhood traumatic events can result in toxic stress (Boparai et al., 2018). Chronic toxic stress may lead to complex trauma, which in children can manifest as increased anxiety, difficulty self-regulating, limited positive coping skills, and difficulty with social skills and communication (van der Kolk, 2003). Although ACEs occur in all races, socioeconomic statuses (SES), and geographic regions; there is a higher prevalence of ACEs for racial minorities and economically disadvantaged groups (Forkey et al., n.d; Metzler, Merrick, Klevens, Ports, &, Ford, 2017; Vsquez, Udo, Corsino, & Shaw, 2019). Marginalized populations and economically disadvantaged groups may lack access to resources needed to prevent adverse childhood experiences and address the negative outcomes of ACEs after they occur. Increasing education and awareness of the prevalence of adverse childhood experiences as well as the associated adult physical and mental health problems in highrisk populations could reduce the number of ACEs in future generations (Fortson et al., 2016). If ACEs cannot be prevented, the use of trauma-informed interventions or early interventions is shown to help mitigate the negative outcomes (Child Welfare Information Gateway, 2019). 5 Occupational therapists' (OT) role in addressing mental health and childhood trauma is still developing (Fraser, MacKenzie, Versnel, 2019). According to Anderson & Grinder (2017) in their article delineating OTs role in social-emotional learning (SEL); it is not yet clear if OT practitioners have reached their full potential in addressing SEL. However, social, sensory, and emotional skills in children are performance skills that are within the Occupational Therapy scope of practice (AOTA, 2020). Deficits in these performance skills can impact a childs performance in their occupations of education, play, social participation, rest and sleep, and leisure (AOTA, 2020). OT practitioners role in addressing social-emotional and sensory needs are outlined in the Occupational Therapy Practice Framework: Domain and Process (4th ed.; AOTA, 2020). An occupational therapy directed Doctoral Capstone Experience (DCE) addressing the negative mental health implications of ACEs for children will add to the body of literature supporting the role of occupational therapists in preventing or preventing and addressing the negative outcomes linked to ACEs. This paper aims to describe the planning, development, and implementation of a community-based, emotional literacy program to improve the childrens knowledge of their own emotions, how their emotions impact others, and coping mechanisms to aid in self-regulation. A synthesis of the current literature highlights the benefit of a community-based, occupational therapy-driven Doctoral Capstone Experience (DCE) addressing the potential negative effects of adverse childhood experiences. 6 Literature Review Effect of ACEs and the Need to Address ACEs Exposure to frequent or severe traumatic events in childhood can result in chronic activation of the bodys stress response; this concept is termed toxic stress (Boparai et al., 2018). Early exposure to adversity has been linked to high levels of inflammation in adulthood (Bucci et al., 2016). Toxic stress increases the level of cortisol and inflammatory markers in the blood and can disrupt the neurological connections in the brain (Bucci et al., 2016). These disruptions can result in complex trauma that adversely impacts every aspect of development (CDC, 2020). Complex trauma can lead to various diseases, functional impairments, higher levels of dysregulation, social problems, the adoption of health risk behaviors, and can ultimately result in early death (CDC, 2020; Kissel et al., 2014; Felitti et al., 1998). In a survey conducted across 25 states, 61% of adults reported experiencing at least one type of ACE, and 1 in 6 adults reported experiencing four or more types of ACEs (CDC, 2020). The American Academy of Pediatrics (AAP) is urging scientists and practitioners to address early adversity, given the high prevalence of ACEs and negative outcomes linked to an accumulation of ACEs (Boparai et al., 2018). In response, scientists and practitioners have successfully developed interventions that target cortisol outcomes in hopes of regulating a childs response to stress (Boparai et al., 2018). Another approach is the use of trauma-informed interventions or early interventions is shown to help mitigate the negative outcomes (Child Welfare Information Gateway, 2019). There are also efforts to prevent child abuse and neglect. Efforts include approaches to help strengthen economic supports to families, change social norms to 7 support parents and positive parenting, provide quality care and education early in life, enhance parenting skills to promote healthy child development, and intervene to lessen harms and prevent future risk (CDC, 2020; Fortson et al., 2016). ACEs in Marginalized populations and Households with Low- Income or in Poverty Accumulation of adverse experiences can have negative adult mental, physical, and emotional outcomes and can affect more than 60% of adults (Felitti et al., 1998; see also CDC, 2020; Forkey et al., n.d). Adverse childhood experiences occur across races, SES, and geographic regions; however, there is a higher prevalence of ACEs for racial minorities and economically disadvantaged groups (Forkey et al., n.d; Metzler, Merrick, Klevens, Ports, &, Ford, 2017; Vsquez, Udo, Corsino, & Shaw, 2019). Living in underresourced, racially segregated neighborhoods, frequently moving, and experiencing food insecurity can result in toxic stress (CDC, 2020). Additionally, marginalized groups are more likely to experience traumatic events as a result of sociopolitical or community violence throughout their lives (Koepen et al., 2017). In comparison to their higher-income peers, children living in low-income households tend to experience a greater number of ACEs (Wade et al., 2014). However, increased access to various types of therapy and wellness programming for populations at-risk of experiencing ACEs may mitigate the negative outcomes linked to adverse childhood experiences (Forkey et al., n.d). In a study assessing the association between ACEs during childhood and holistic wellbeing in early adulthood for a low-income urban cohort, individuals who experienced more ACEs were significantly more likely to experience poor outcomes (Giovanelli, Renyolds, Mondi, & Suh-Ruu-Ou, 2016). ACEs can have an even greater negative 8 impact on health and well-being if the bodys stress response is not buffered by a strong, supportive relationship from an adult (Kerker, 2015). Parents who have experienced adverse childhood experiences can demonstrate diminished parenting capacity or unfit responses to their children (AAP, 2014; Steele et al., 2016). The parents past trauma may result in physiological changes to their stress response system, resulting in maladaptive responses to additional stressors, like the daily challenges of parenting (AAP, 2014; Steele et al., 2016). Problematic parenting behaviors can be perpetuated by the increased chance of social risk factors, mental health issues, and adoption of risky behaviors linked to ACEs (AAP, 2014; Campbell, Walker, & Egede, 2016; Felitti et al., 1998; Steele et al., 2016). A community-based, emotional literacy program to promote the health and wellness of elementary school-aged children may help mitigate the effects of toxic stress on their young adult and adult lives. Mental Health Promotion to Combat Effects of ACEs Mental health promotion programs are considered one of the most effective ways to promote health within a school environment (Tominey, OBryon, Rivers, Shapses, 2017). Additionally, emotional literacy is the ability to identify, understand, and respond to emotions in oneself and others in a healthy manner (Joseph & Strain, 2003). Children who have a strong understanding of emotional literacy are less likely to engage in fighting, are less impulsive, more focused, have greater academic achievement, and have more positive relationships (Joseph & Strain, 2003). These children are also generally healthier and able to tolerate and address frustration in a healthier manner (Joseph & Strain, 2003). The positive outcomes of a strong understanding of emotional literacy may result in increased resilience in these children. 9 As a result, they may be more equipped to build relationships and engage in learning using their acquired emotional literacy to negate the negative effects that ACEs can have on engagement in education and maintaining positive relationships. There is a lack of literature supporting the role of occupational therapists in developing mental health programs to address the negative outcomes associated with an accumulation of ACEs. Future studies assessing the role of occupational therapy in addressing ACEs are needed. An occupational therapy directed Doctoral Capstone Project (DCE) addressing the negative mental health implications of ACEs for children who may have experienced ACEs will add to the body of literature supporting the role of occupational therapists in preventing or preventing and addressing the negative outcomes linked to ACEs. Theoretical Framework The occupation-based models (OBMs), the KAWA Model and Ecology of Human Performance (EHP); along with the Psychodynamic frame of reference (FOR), and Daniel Golemans Theory of Emotional Intelligence will guide professional reasoning and program development throughout the DCE (see Figure 1). The KAWA Model The KAWA model depicts life as a river flow. According to the model, at times, events or experiences in life can impede the flow of or narrow the width of the river (Teoh & Iwama, 2015). These events or experiences are represented as rocks or driftwood within the model. Potential adverse childhood experiences may represent the rocks for marginalized populations. Rocks can disrupt or weaken the river flow, which 10 thereby impacts a persons engagement in his or her occupations. Driftwood can either block, negative experience, or enhance river flow through an individuals personal assets (Teoh & Iwama, 2015). If a person has positive personal assets, an occupational therapist can utilize them to enhance river flow and serve as motivation for the individual in his or her recovery. Personal assets may come in the form of love from a family member, support from a community member, a trusted friend, and/or positive influences. Each of these factors can build resilience in an individual and potentially lessen the negative effects of ACEs. Ecology of Human Performance. The EHP model emphasizes a preventative, health-promotional, and rehabilitative approach (Cole & Tufano, 2008). This OBMs preventative focus aligns with the preventative role of occupational therapists with individuals who have experienced ACEs. The preventative and health-promotional foci of the EHP will each guide the purpose of the program for the young children. The aim is to enhance the childs wellness and provide them with positive experiences to help mitigate the effects of toxic stress in their adult lives. Psychodynamic Frame of Reference. Adverse childhood experiences can also impact mental health and cognition throughout the lifespan (Jones, Nurius, Song, & Fleming, 2018; Karatekin, 2018). The Psychodynamic FOR applies to the potential conflict individuals in this population experience as a result of negative experiences in his or her childhood (Cole & Tufano, 2008). Occupational therapists can use this FOR as a set of guidelines to analyze and explore the impacts of the individuals childhood conflicts on his or her overall well-being and occupational performance. 11 Daniel Golemans Theory of Emotional Intelligence. In conjunction with the Psychodynamic FOR, Daniel Golemans Theory of Emotional Intelligence takes a psychological approach. Daniel Goleman posits that there are five components of emotional intelligence: self-awareness, self-regulation, internal motivation, empathy, and social skills (Goleman, 2005). These five components of emotional intelligence will be used to guide the structure and contents of the emotional literacy program. The model EHP and the Psychodynamic FOR, and Daniel Golemans Theory of Emotional Intelligence will all guide the approach of the DCE and ensure a holistic view of the population. Methods Project Development Project Design. The culmination of this 14-week Doctoral Capstone project is an implementable, occupational therapy driven, emotional literacy program for children at a local community center aimed to improve the childrens knowledge of their own emotions, how their emotions impact others, and coping mechanisms to aid in selfregulation. The needs assessment, program development, and pre-assessment were completed in the first two weeks of the DCE. Program implementation began on week three and continued through week 9. There are six total program sessions, with one session completed each week of program implementation. The sixth session served to review the content from the five previous sessions and answer participant questions. Weeks 10 through 14 were dedicated to programming evaluation and educating the 12 Before and After Care Program directors and educators on program implementation and sustainability. Site Profile and Target Population. The target population is elementary-aged children from marginalized populations who may have experienced adverse childhood experiences. For the initial implementation, four children in 2nd grade served as the participants of the six-session program. The four children were chosen based upon age and availability to participate in the program. Flanner House is a site that would benefit from the implementation of an emotional literacy program for their elementary-aged children. Flanner House is a community center that primarily serves the population within the Northwest area of Indianapolis. The demographics of individuals served at Flanner house are 96% African American, 3% Multi-racial, 1% White, with 80% being single women with children (D. White, personal communication, 2021). This area is challenged with a population where 27% of its residents' complete high school and only 18% attend some college (D. White, personal communication, 2021). The Flanner House functions to support, advocate for and empower individuals, children and families by applying educational, social and economic resources that move members of the community towards stabilization, and self-sufficiency (Cosby, n.d.). The Flanner House Before and After Care Program is an educational resource for elementary school-aged children, ages 5-12, in the surrounding area. The Before and After Care Program aims to provide a quality, developmentally appropriate, childcare environment (Cosby, n.d.). Needs Assessment. The needs assessment was conducted through unstructured, face-to-face interviews, secondary data, and direct observation. A portion of the needs assessment was conducted with Debra White, the Deputy Director of the Flanner House, 13 through a face-to-face interview. She provided information regarding the demographics of the population who utilizes the Flanner House, key informants to contact within the Flanner House, strengths and resources the Flanner House has to offer, and a general idea of the programs offered in the Before and After Care Program. Two Occupational Therapy Doctoral Capstone students who are also at the site are addressing the needs of the staff and the children in the Child Development Center. Therefore, Ms. White expressed the need for an occupational therapy-driven program in the Before and After Care Program, the department in the Flanner House whose needs have not yet been addressed. According to Ms. White, the educators and teachers in the program have expressed concern that many of the children display behavioral issues including impulsivity and difficulty with emotional regulation. During an interview with Sheddric Crawford, Youth Director of the Before and After Care program, Mr. Crawford communicated that several children are unable to self-regulate when in an emotionally heightened state. In children, an accumulation of toxic stress can manifest as behavioral issues that may disrupt their ability to maintain relationships and engage in learning (Kerker et al., 2015). Secondary data including specific population demographics, housing, employment, crime, and health statistics of the surrounding area supplements the information acquired from the interviews with Debra White and Mr. Crawford. One hundred percent to 200% of the families that utilize the Flanner House are below the poverty level, 97% unemployed or underemployed, 92% rent or are technically homeless, 62% utilize public transportation or walk, 69% have a negative net income and net worth, and 88% have a credit score under 600 (D. White, personal communication, 2021). 14 Direct observations of the children in the Before and After Care Program occurred in two settings, 1) during E-Learning, and 2) during their free time. Using a jottings method, brief sentences describing important events, the childrens behaviors, and their conversations were recorded in a table format. These observations were used to supplement both the needs assessment and program efficacy. After speaking to both Ms. White and Mr. Crawford, reviewing secondary data, and completing direct observations, the program developer determined that the children would benefit from an emotional literacy program to address their mental wellness through increasing their understanding of emotional intelligence and literacy. Through the programming offered within the Before and After Care, the childrens physical, life skills, and career education needs are addressed. However, there is a gap in their education regarding health, specifically mental health education regarding emotional literacy. Program Description Emotional Literacy Program for Elementary Aged Children. The program developer used each of the five components of Daniel Goldmans theory of emotional intelligence as a basis for each of the five main sessions of the program. Sessions 1-5 discuss self-awareness, self-regulation, internal motivation, empathy, and social skills; respectively. Each session was structured using an adapted version of the Seven-Step Format for Group Leadership outlined by Cole (2005), 1) Introduction, 2) Activity, 3) Sharing, 4) Processing, 5) Generalizing, 6) Application, and 7) Summary. Materials and activities for each session of the program were found through existing literature and resources. Sessions took place in a quiet room at the Flanner House with the program 15 developer leading the sessions and facilitating discussion. Each session begins with a review of terms, concepts, and activities completed in previous sessions and is completed with questions that foster the participants to process, generalize, and apply the information they have learned in the session. The first session introduced the terms occupational therapy, emotional literacy, and self-awareness in laymens terms appropriate for second graders. The activities included a self-awareness worksheet and an activity termed Big Brain, Little Brain: Flipping your Lid (Siegel & Bryson, 2012). The purpose of the self-awareness worksheet is to urge the participants to reflect on their strengths and things they may struggle with. The Flipping your Lid activity uses the hand and fingers as a model of the brain to describe the flight or fight response that occurs in our brains and the importance of using calming strategies when in these heightened states. The second session introduced the term self-regulation. The activity introduced concepts from Zones of Regulation, a cognitive-behavioral approach created by Kuypers (2011). The purpose of the Zones of Regulation activity is to introduce the participants to methods they can use to regulate their needs, emotions, and impulses healthily. This session included posters depicting the emotions they may feel in each zone and strategies they can use to calm themselves down, a worksheet encouraging the participants to draw and reflect on their current emotions, and ended with an activity using sensory toys as a calming strategy. The sensory toys included items such as a sensory bin and fidgets. The third session introduced the term internal motivation. The activity included creating a Growth Mindset Flipbook to improve their understanding of two mindsets, growth and fixed (Tobin, 2017). The purpose of this session is to present the concept that 16 individuals can continue gaining knowledge and growing if they work hard versus believing that they are incapable of improving. The fourth session introduced the terms empathy and compassion. The activity included viewing an animated video titled Tye, Try Again, a resource provided by The Compassion Project (The Compassion Project, 2021). The video together with the included questions assisted the participants in reflection regarding how the characters in the video might feel and what they may need to feel better. Additionally, the fourth session included a written activity provided by The Compassion Project urging the children to reflect on the emotions an individual may feel in a given situation (The Compassion Project, 2021). Together these activities aimed to foster theory of mind. To promote the development of social skills in the participants, the fifth session included educational concepts and activities explaining what it means to be a good friend and skills used when learning how to share. The activity included viewing a video titled Sharing and Taking Turns (MazerellaMediaHD, 2019) with reflection and discussion questions throughout to promote information processing. The sixth session served to reinforced terms, concepts, and skills acquired in previous sessions and to answer participant questions. The culminating activity was an emotional responses bingo game created by Socially Skilled Kids (n.d.) to actively review the information. The goal of this program is to promote the health and wellness of elementary school-aged children through sessions aimed to improve their self-awareness, selfregulation, internal motivation, empathy, and social skills. The objectives include accurately defining the components of emotional intelligence to the children and 17 supplying the teachers and staff with the tools and resources to improve the childrens emotional literacy. Program Implementation The program implementation began by first collaborating with the director and educators of the Before and After Care Program to determine the best time to disseminate the information to the children. One session was conducted each week beginning on week three of the 14-week Doctoral Capstone Experience. This allowed time for flexibility if the COVID-19 pandemic prevented a session from occurring on a given week. Additionally, weekly sessions allowed time for program evaluation and to ensure program sustainability. The specific day of each session was dependent upon if the children were present at the Flanner House and if time allowed. The contents of the program will remain with the staff at the Flanner House so they can continue the implementation with the other children on site. Program Outcome The Goal Attainment Scale (GAS) in conjunction with a client satisfaction survey were used to determine program implementation efficacy. The GAS is an individualized outcome measure that involves the selection of goals and scaling of selected goals to measure patient-centered outcomes and program efficacy concurrently (Kiresuk & Sherman, 1968). To evaluate program effectiveness, Goal Attainment Scaling measured the participant's acquisition of terms and skills introduced in each program session using a 5-point scale (see Appendix A). The GAS was administered before and after program implementation and completed by the Youth Director on behalf of the 4 participants. Scores from the pre-and post-program implementation will be compared to determine 18 program efficacy. Client satisfaction with program design, implementation, and effectiveness was assessed using a 7-item, 5-point Likert scale program satisfaction survey, ranging from 1= not at all satisfied to 5 = extremely satisfied (see Appendix B). The clients had the opportunity to provide open-ended feedback on the program at the end of the survey. Participant interviews were also conducted three times during program implementation to gather qualitative data to measure participant responses to program sessions. Participant answers to the following questions were recorded, transcribed, coded, and thematized. Questions were developed to assess the program's effectiveness in helping participants process, generalize, and apply learned information. How did you feel while completing this activity? What is something new that you learned? What did you find most challenging about todays activity? How can you use what you have learned? Questions were reframed with the help of the Youth Director if children did not understand a particular question. Ethical Considerations As determined by the Institutional Review Board (IRB) of the University of Indianapolis, implementation of the emotional literacy program was not considered research. However, participants and participant caregivers were informed of program objectives and given an informed consent form. By signing the form, participants and participant's caregivers understood that they could withdraw from the program at any time and that they were participating voluntarily. All data collected was stored in a locked cabinet, with only access by the program developer. All information collected 19 from surveys, assessments, and interviews were de-identified with a code by the program developer to protect confidentiality and privacy. All information was shredded following program completion. Results The desired outcome of this program was an increase in understanding of the skills related to self-awareness, self-regulation, internal motivation, empathy, and compassion by program participants. Participant Information Three of four participants participated in all six emotional literacy program sessions over six weeks. Out of the four participants, one was not present for four of the six sessions due to scheduling conflicts. The Goal Attainment Scale outcome measured was administered by the program developer and completed by the Youth Director for three of the four participants. Baseline scores were measured for all four participants, however, achieved scores were only measured for the three participants who were present for all six sessions. Participant interviews were completed with three of four participants to measure program efficacy. Data Analysis Total GAS scores were calculated using the following equation: = 50 + 10 (wi xi) (0.7 wi2 + 0.3(wi)2 ) wi = the weight assigned to the ith goal xi = the numerical value achieved (between 2 and + 2) = the expected correlation of the goal scales (normally 0.3) 20 Goal importance and difficulty were determined by the program developer on a scale of 0-3, with 0 = not at all, 1 = a little, 2 = moderately, and 3 = very. All goals were rated with the importance value of 2. Goals 1-3 were rated with a difficulty of 2 and goals 4-5 were rated with a difficulty of 3 (see Table 1). Quantitative Results GAS Scores. The baseline total GAS score of all five GAS goals for participants one through four were 23.8, 27.5, 20.0, and 27.5 respectively (see Table 2). Achieved scores for participants one through three were 73.7, 70.0, and 47.5, respectively (see Table 2). The change was calculated by finding the difference between the achieved scores and the baseline scores. All three participants showed an increase in their total GAS score following program completion (see Figure 1). Each of the three participants also showed a positive change in baseline and achieved scores for each goal. Qualitative Results Program Satisfaction Survey. The program satisfaction survey was completed by the Youth Director following program completion. Survey items 1, 2, 6, and 7 were rated 5/5, while items 3 5 were rated 4/5. The Youth Director was extremely satisfied with the program developer's knowledge of program materials, program materials and resources provided to staff, the structure of individual sessions, and the program overall. The Youth Director was very satisfied with the activities conducted in Sessions 1-6, the duration of the program, and the structure of the program. Mr. Crawford 21 suggested that an older group would be more ideal. He stated that the program, Worked out well, but there was some immaturity from the youth. Participant Interviews. Following completion of participant interviews, answers were transcribed, coded, and thematized. The following overall program themes were found: Positive Participant Reactions, Difficulty with Written Tasks and Attention to Task, and Remembering Visual/Kinesthetic Activities. Positive Participant Reactions. When participants were asked How did you feel while completing this activity in regards to each session activity, participants responded that they felt happy. When asked to explain why they felt happy one child responded, I liked playing in the beans, it made me feel calm, in reference to the sensory bin the children were able to explore in session 2 of the program. Another participant expressed that they felt happy during the writing activity because I know how to write my letters and I know how to write neatly. Difficulty with Written Tasks and Attention to Task. While one participant enjoyed the writing activities, the other two participants expressed that the writing portions of the activities were the most challenging. Participants also expressed that they had difficulty attending to the educational concepts portions of the sessions. Remembering Visual/Kinesthetic Activities. When participants were asked if they learned something new they initially responded by visually and verbally 22 explaining the brain, hand model from the first session, and the zones of regulation from the second session. When asked how they will use what they have learned, two participants responded by explaining that they would use the tools in the toolbox if they were in the yellow, red, or blue zones. They further explained that they would take a deep breath, get a drink of water, or talk to an adult if they were feeling angry or frustrated. Another participant explained a scenario when they might see their friend displaying behaviors consistent with the red zone. They relayed that would help their friend by sharing with them or suggesting that they take deep breaths. Discussion The purpose of the occupational therapy driven, emotional literacy program at the Flanner House was to combat ACE-related negative outcomes by improving the childrens knowledge of their own emotions, how their emotions impact others, and coping mechanisms to aid in self-regulation. After reviewing the literature, the program developer found that ACEs are prevalent in all populations, but highly prevalent in marginalized and economically disadvantaged populations (Forkey et al., n.d; Metzler, Merrick, Klevens, Ports, &, Ford, 2017; Vsquez, Udo, Corsino, & Shaw, 2019). The trauma resulting from ACEs can manifest as behavioral and social-emotional difficulties in children. Difficulties in these areas can impact childrens participation in their occupations such as social participation, education, play, rest and sleep, and leisure. Mental health programs addressing emotional literacy in children have been shown to increase resilience in children. As a result, the children are less likely to engage in 23 fighting, less impulsive, more focused, have greater academic achievement, and more positive relationships (Joseph & Strain, 2003). The program developer theorized that elementary-aged children within a marginalized population and who live in an economically disadvantaged area within Indianapolis would benefit from an emotional literacy program. The current capstone experience supported results previously found from the implementation of an emotional literacy program. Participants showed an increased ability to demonstrate an understanding of skills related to self-awareness, self-regulation, internal motivation, empathy, and social skills as indicated by the increase in achieved GAS scores. The ability to recognize and apply these skills can aid in the development of resilience in children. As a result, when they are approached with situations that incite the flight, fight, or freeze response, they can use their acquired self-awareness to utilize learned strategies such as taking deep breaths or drinking water to aid in self-regulation. Moreover, the participants' gains in empathy and social skills will support the development of meaningful relationships with friends and caregivers to further reinforce resilience. Implications for Occupational Therapy The positive results of the emotional literacy program provide preliminary support for the role of Occupational Therapy in addressing social-emotional development in elementary-aged children from marginalized populations who may have experienced ACEs. Furthermore, the findings of this capstone experience support the efficacy of an occupational therapy-driven emotional literacy program in a community setting. An Occupational Therapists unique ability to consider how a persons mental functions, past 24 trauma, and current environment impact their occupational performance warrants occupational therapy services to address or prevent ACE-related negative outcomes. Moreover, continued education for occupational therapists on the impacts of adverse childhood events on marginalized populations specifically is warranted. Limitations and Recommendations Post reflection of the program presented the program developer with potential limitations that may have impacted program efficacy. First, program contents including educational concepts and activities may not have been the just right challenge for the participants. As a result, participants may have lacked a full understanding of program contents. It is suggested then, that future program developers emphasize developing ageappropriate content for the participants. Second, participant interviews were conducted three times throughout program implementation. As a result, two weeks may have passed before participants were asked questions regarding a specific session. It is recommended that future program developers aim to ask questions regarding each session within the few days following the session to receive more accurate and detailed responses to provide more robust qualitative data. Third, the program developer was unable to work with staff directly to promote program sustainability due to COVID-19 restrictions during the last weeks of the DCE. It is suggested that future program developers incorporate additional sessions to educate staff on the programs purpose, as well as, sustainability of the program. Conclusion There is a need to address and mitigate ACE-related negative outcomes in children from marginalized and economically disadvantaged groups. Addressing how 25 ACEs and complex trauma impacts a childs participation in their occupations is within Occupational Therapys scope of practice. It is our duty as practitioners to continue educating ourselves on the effects of ACEs on marginalized populations. With this education and increased understanding, we can prevent and address ACEs through community-based, emotional literacy programs; community education; and parental education. 26 References Anderson, M., & Grinder, S. (2017). Occupational Therapys Role in Social-Emotional Development Throughout Childhood. OT Practice, 22(7), CE-1-CE-8. Retrieved 2017, from https://www.aota.org/~/media/Corporate/Files/Publications/CE-Articles/CE-ArticleApril-2017.pdf Adverse Childhood Experiences and the Lifelong Consequences of Trauma. (2014). American Academy of Pediatrics. Retrieved March 2, 2020, from https://www.aap.org/enus/Documents/ttb_aces_consequences.pdf Boparai, S. K. P., Au, V., Koita, K., Oh, D. L., Briner, S., Harris, N. B., & Bucci, M. (2018). Ameliorating the biological impacts of childhood adversity: a review of intervention programs. Child abuse & neglect, 81, 82-105 Campbell, J. A., Walker, R. J., & Egede, L. E. (2016). Associations between adverse childhood experiences, high-risk behaviors, and morbidity in adulthood. American journal of preventive medicne, 50(3), 344-352. Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Cosby, B. (n.d.). About Us. Retrieved March 2, 2020, from https://flannerhouse.org/about-us/ () Felitti, V. J., Anda, R. F., Nordenberg, D., Williamson, D. F., Spitz, A. M., Edwards, V., & Marks, J. S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. American journal of preventive medicine, 14(4), 245-258. 27 Forkey, H., Gillespie, R. J., Pettersen, T., Spector, L., & Stirling, J. (n.d.) Trauma Guide. Retrieved March 2, 2020, from https://www.aap.org/en-us/advocacy-and-policy/aaphealth-initiatives/healthy-foster-care-america/Pages/Trauma-Guide.aspx Fortson, B. L., Klevens, J., Merrick, M. T., Gilbert, L. K., & Alexander, S. P. (2016). Preventing child abuse and neglect: A technical package for policy, norm, and programmatic activities. Atlanta, GA: National Center for Injury Prevention and Control, Centers for Disease Control and Prevention. Giovanelli, A., Reynolds, A.J., Mondi, C.F., & Ou, S.R. (2016). Adverse Child Experiences and Adult Well-Being in a Low-income, Urban Cohort. Pediatrics, 137(4)10.1542/peds.20154016 e20154016. doi:10.1542/peds.2015-4016 Goleman, D. (2005). Emotional intelligence. Bantam. Jones, T. M., Nurius, P., Song, C., & Fleming, C. M. (2018). Modeling life course pathways from adverse childhood experiences to adult mental health. Child abuse & neglect, 80, 32-40. Joseph, G. E., & Strain, P. S. (2003). Enhancing emotional vocabulary in young children. Young Exceptional Children, 6(4), 18-26. Karatekin, C. (2018). Adverse childhood experiences (ACEs), stress and mental health in college students. Stress and Health, 34(1), 36-45. Kerker, B. D., Zhang, J., Nadeem, E., Stein, R. E., Hurlburt, M. S., Heneghan, A., ... & Horwitz, S. M. (2015). Adverse childhood experiences and mental health, chronic medical conditions, and development in young children. Academic pediatrics, 15(5), 510-517. 28 Kessler, R. C., Aguilar-Gaxiola, S., Alonso, J., Benjet, C., Bromet, E. J., Cardoso, G., ... & Koenen, K. C. (2017). Trauma and PTSD in the WHO world mental health surveys. European journal of psychotraumatology, 8(sup5), 1353383. Kiresuk, T. J., & Sherman, R. E. (1968). Goal attainment scaling: A general method for evaluating comprehensive community mental health programs. Community Mental Health Journal, 4(6), 443-453. doi:10.1007/bf01530764 Kuypers, L. (2011). The Zones of Regulation. Retrieved February 18, 2021, from https://www.zonesofregulation.com/index.html MazzarellaMediaHD. (2019, July 08). Sharing and taking turns | marvel & friends - created for kids on the autism spectrum (asd). Retrieved March 17, 2021, from https://www.youtube.com/watch?v=gCXeAhvqi8A Metzler, M., Merrick, M. T., Klevens, J., Ports, K. A., & Ford, D. C. (2017). Adverse childhood experiences and life opportunities: Shifting the narrative. Children and Youth Services Review, 72, 141149. https://doi.org/10.1016/j.childyouth.2016.10.021 Newton, A. (2013). Effective Occupational Therapy Interventions for Children Who Have Experienced Toxic Stress: A Systematic Literature Review (Doctoral dissertation, The College of St. Scholastica). Prevention Strategies|Child Abuse and Neglect|Violence Prevention|Injury Center|CDC. (2020, March 5). Retrieved from https://www.cdc.gov/violenceprevention/childabuseandneglect/prevention.html Teoh, J.Y. & Iwama, M.K. (2015). The Kawa Model Made Easy: a guide to applying the Kawa Model in occupational therapy practice (2nd edition). Retrieved from: www.kawamodel.com 29 The compassion project - lesson plans for teaching empathy & compassion. (2021, March 19). Retrieved February 24, 2021, from https://everfi.com/courses/k-12/lesson-plans-empathycompassion-elementary/ Tobin, J. (2017). Growth Mindset Flipbook. Retrieved February 4, 2021, from https://elementarynest.com/teaching-kids-about-growth-mindse/ Tominey, S. L., O'Bryon, E. C., Rivers, S. E., & Shapses, S. (2017, March). Teaching Emotional Intelligence in Early Childhood. Retrieved from https://www.naeyc.org/resources/pubs/yc/mar2017/teaching-emotional-intelligence Siegel, D., & Bryson, T. (2012). Big Brain, Little Brain: Flipping Your Lid. Retrieved January 20, 2021, from https://www.attachment-and-trauma-treatment-centre-forhealing.com/uploads/4/0/5/4/4054075/flipping_lid_infographic.pdf Steele, H., Bate, J., Steele, M., Dube, S. R., Danskin, K., Knafo, H., Nikitiades, A., Bonuck, K., Meissner, P., & Murphy, A. (2016). Adverse childhood experiences, poverty, and parenting stress. Canadian Journal of Behavioural Science / Revue canadienne des sciences du comportement, 48(1), 3238. https://doi.org/10.1037/cbs0000034 Vsquez, E., Udo, T., Corsino, L., & Shaw, B. A. (2019). Racial and Ethnic Disparities in the Association Between Adverse Childhood Experience, Perceived Discrimination and Body Mass Index in a National Sample of U.S. Older Adults. Journal of nutrition in gerontology and geriatrics, 38(1), 617. https://doi.org/10.1080/21551197.2019.1572569 Wade, R. Jr, Shea, J.A., Rubin, D., et al (2014). Adverse childhood experiences of low-income urban youth. Pediatrics. 134(1), 1320. doi: 10.1542/peds.2013-2475. 30 Table 1 GAS Goals Importance, Difficulty, and Weight Goals Importance Difficulty Weight (wi) 1 2 2 4 2 2 2 4 3 2 2 4 4 2 3 9 5 2 3 9 Table 2 Participant Baseline vs. Achieved Total GAS Scores for Goals 1-5 Participant Baseline Achieved Change 1 23.8 73.7 49.9 2 27.5 70.0 42.4 3 20.0 47.5 27.5 4 27.5 31 Figure 1. Professional Reasoning Diagram Note. The occupation based models (OBMs), Kawa Model and Ecology of Human Performance (EHP); along with the Psychodynamic frame of reference (FOR), and Daniel Golemans Theory of Emotional Intelligence will guide professional reasoning and program development throughout the DCE. 32 Figure 2. Participant Baseline and Achieved Total GAS Scores Note. Participant Baseline and Achieved Goal Attainment Scale Scores. The x-axis includes participants 1-3. The y-axis displays total GAS scores. The light blue bars represent scores prior to program completion and the dark blue bars represent scores post program implementation. 33 34 Appendix A Level of Attainment Goal 1 Goal 2 Goal 3 Goal 4 Goal 5 -2 Much less than expected The child does not recognize the term selfawareness. The child does not recognize the term selfregulation. The child does not recognize the term internal motivation. The child does not recognize the term empathy. The child does not recognize the term social skills. -1 Somewhat less than expected The child can recognize the term selfawareness and attempt to define it. The child can recognize the term selfregulation and attempt to define it. The child can recognize the term internal motivation and attempt to define it. The child can recognize the term empathy and attempt to define it. The child can recognize the term social skills and attempt to define it. The child can accurately describe what it means to be selfaware. The child can accurately describe the term selfregulation. The child can accurately define and describe the term internal motivation. The child can accurately define and describe the term empathy. The child can accurately define and describe the term social skills. +1 Somewhat more than expected The child can describe and provide personal examples of selfawareness. The child can describe and provide personal examples of selfregulation. The child can describe and provide personal examples of internal motivation. The child can describe and provide personal examples of empathy. The child can describe and provide personal examples of social skills. +2 Much more than expected The child can demonstrate selfawareness in interactions with classmates and staff. The child can demonstrate self- regulation in interactions with classmates and staff. The child can demonstrate internal motivation in interactions with classmates and staff. The child can demonstrate empathy. in interactions with classmates and staff. The child can demonstrate social skills in interactions with classmates and staff. 0 Expected level of outcome 35 Appendix B Please rate below on a scale of 1-5 (1 being not satisfied 5 being very satisfied) your satisfaction with the following: 1. Instructors knowledge of program materials 1 2 3 4 5 3 4 5 3 4 5 2 3 4 5 2 3 4 5 2 3 4 5 2 3 4 5 2. Provided program materials and resources 1 2 3. Activities conducted in Sessions 1-6 1 2 4. Duration of Program (6 weeks) 1 5. Structure of program 1 6. Structure of individual sessions 1 7. Overall program satisfaction 1 8. Do you have any suggestions /comments that will help improve the program? _________________________________________________________________________ 36  ...