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... Mindfulness-Based Interventions During Play for Parents of Children with Down Syndrome: Two Case Studies Dr. Alison Nichols, OTR, Samantha Trench, Serena Good, Caroline Stone, Marissa Cavanaugh, Carissa Anderson, Caitlyn Naghdi, Krystal Scott December 15, 2023 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, OTR, OTD A Research Project Entitled Mindfulness-Based Interventions During Play for Parents of Children with Down Syndrome: Two Case Studies 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 Alison Nichols, OTR, OTD, Samantha Trench, Serena Good, Caroline Stone, Marissa Cavanaugh, Carissa Anderson, Caitlyn Naghdi, Krystal Scott Occupational Therapy Doctorate Students Accepted on this date by the OTD Program Director: 12/15/23 Alison Nichols, OTR, OTD OTD Program Director Associate Professor of Occupational Therapy Date Abstract Parents of children with disabilities are known to experience stressful or anxious feelings in their role as both parents and caregivers but it is less known about what, if any, effective strategies may be used to reduce these feelings. The following study aimed to explore the use of mindfulness-based interventions (MBI) for parents of a child with a disability and consider the effects these may have on stressful or anxious feelings experienced by those parents during parent-child play interactions. Parents with a child with a disability included in the study met the following inclusion criteria: parents must be at least 18 years of age with a child with a disability between the ages of two and twelve and must be English-speaking. This study was conducted virtually in the format of a researcher-led focus group. To assess the effectiveness of the mindfulness strategies provided, follow-up surveys were conducted six weeks post-intervention, and qualitative data was collected through audio transcripts. One theme identified in the followup survey responses was the positive effects of mindfulness techniques during parent-child play in public or private settings. Based on the follow-up survey results, both participants expressed positive experiences and decreased instances of stressful or anxious feelings using mindfulness techniques. Limitations of the study include a limited sample size indicated by only having two participants who both identify as female and mothers to a child with Down syndrome, lack of standardized assessment tools, and participants located in the same geographical location. Implications for future studies and practice include the effects of prolonged use of mindfulness techniques on the anxiety of caregivers and parents of children with diversified diagnoses. Keywords: Down syndrome, play, caregivers, anxiety, mindfulness Mindfulness-Based Interventions During Play for Parents of Children with Down Syndrome: Two Case Studies When raising a child, parents typically will encounter physical, emotional, and financial stressors. When raising a child with a disability, these are amplified and may lead to parents experiencing increased anxious feelings. As described by Nichols et al. (2021), parents of a child with a disability experience anxious feelings from stressors, which may include low socioeconomic status, loss of a family member, or parenting a child with a disability, among many others (p. 3). These anxious feelings have the potential to penetrate every aspect of the parents life, impacting their ability to engage in meaningful occupations and sustain current levels of satisfaction and quality of life. Anxious feelings experienced by parents may also impact playful interactions with their children. Romn-Oyola et al. (2018) explained that playfulness is a relationship-based phenomenon and an important factor for the development of social relationships between children and their main caregivers (p. 2). The purpose of this study is to address the significant gap in the literature on resources or strategies and their effects on parents who experience stressful or anxious feelings during parent-child play interactions. Play Play is the primary occupation of children and is displayed in multiple forms across various settings including imaginative, physical, group, and individual. Play provides critical support for optimal child development. According to Tamm and Skr (2000), play has been viewed as an all-encompassing activity through which a child develops skills in self-awareness, communications, and socialization (p.174). Play is recognized by the United Nations High Commission for Human Rights (2022), as a right of every child (Article 31.1). Play teaches children important motor, cognitive, and social skills as well as creativity and self-confidence which are skills required throughout life (Romn-Oyola et al., 2018, p.1). However, it may be more difficult for children with disabilities to engage in play as their play is often described as skill-based with a focus on therapeutic intervention rather than exploration and discovery (Parham & Fazio, 2007). Due to this focus on therapeutic intervention, these children could be missing out on essential experiences afforded by unstructured free play. Down Syndrome According to the Centers for Disease Control and Prevention (CDC, 2023), Each year, about 6,000 babies born in the United States have Down syndrome. This means that Down syndrome occurs in about 1 in every 700 babies (How Many Babies Are Born section). Down syndrome is the most common genomic disorder of intellectual disability and is caused by trisomy of Homo sapiens chromosome 21 (Antonarakis et al., 2020, p. 2). Like all children, children with Down syndrome (DS) have unique characteristics and individualized needs that may change throughout their lifespan. De Weger et al. (2021) mention that it is common for children with DS to have developmental delays impacting multiple developmental processes, such as vulnerabilities in motor, cognitive, language, social and attentional domainsall aspects of adaptive behaviour (pp. 1-2). According to Antonarakis et al. (2020), the social stigma around the diagnosis of DS and the inability to fit within cultural norms are barriers to successful community engagement of individuals with DS. The impact of developmental barriers and social stigmatism surrounding DS not only the well-being and quality of life of the child but also those of their caregiver. Parental Well-Being Many parents who care for children with disabilities experience anxiety, stress, and other psychological symptoms (Rani et al., 2014). These low-level feelings of anxiousness, tension, fear, and distress are caused by the everyday demands and stressors involved in caring for children with disabilities. A study by Hedov et al. (2000) concluded that mothers of children with Down syndrome had much lower self-reported ratings of vitality and mental health than mothers of neurotypically developing children. While numerous parents of children with disabilities seek coping strategies and social support to manage anxious feelings and distress, some parents still experience clinically significant levels of anxiety and/or depression (Martin et al., 2019, p. 980). It is crucial to address parental distress experienced by caregivers of a child with a disability because poor parental well-being can have a negative effect on both quality of life and functional performance. Research indicates that parents of children with disabilities who report having anxious feelings typically have difficulty interacting with their children, particularly through play (Nichols et al., 2021). One research study by Rani et al. (2014) evaluated anxiety levels and coping strategies in mothers of children with cerebral palsy. In the discussion, it was found that parenting stress was related to the mothers style of interaction with their childrenwhich means that a high level of maternal stress interferes with the mothers effectiveness for engaging in quality interaction with their children (Rani et al., 2014, p. 248). In other words, parental anxiety and stress significantly affected parent-child interactions. Moreover, the study found that there was a strong association between parenting stress and interaction style suggests the need for therapists to develop and implement interventions to enhance the quality of mother-child interaction along with other rehabilitation services for children with disabilities (Rani et al., 2014, p. 248). For parents dealing with anxious feelings and stress when interacting with children with disabilities, rehabilitation services may be useful to improve levels of satisfaction and quality of life (Rani et al., 2014). Caregivers experiencing a decrease in well-being resulting from anxious feelings may benefit from mindfulness-based interventions that are accessible and usable in the home. Mindfulness Mindfulness is a psychological practice that allows an individual to become increasingly aware of the internal and external factors that surround them. Keng et al. (2011) also describes mindfulness as awareness and nonjudgmental acceptance of ones moment-to-moment experience (p. 2). The application of mindfulness to psychological health has been proven to be an effective solution in relieving worry, fear, stress, and anxiety in various situations (Keng et al., 2011). Therefore, a strategy that mentally re-engages the parents back to the present moment when playing with their child may be a beneficial approach when taught correctly. A review by Creswell (2017) demonstrates that mindfulness interventions can improve mental and physical health, cognitive and affective factors, and interpersonal outcomes (p. 508). The research indicates there are consistent findings on the benefits of mindfulness-based interventions for parents of children with disabilities. Sarang et al. (2020) demonstrated that mindfulness-based interventions specifically benefited parents of children with ASD, specifically concerning anxiety symptoms and parental stress. Similarly, Burke et al. (2017) and Neece et al. (2019) also demonstrated mindfulness benefits for parents of children with intellectual and developmental disabilities or delays including improvements in personal well-being, advocacy skills, professional relationships, children's services, reactivity, and being present in the moment. Overall, the findings related to Mindfulness-Based Interventions (MBI) have demonstrated a positive effect on the parents to whom they were administered. As previously described, mindfulness-based practices have become more mainstream in recent decades. Though popular, there is still limited research on the impact of mindfulness- based practice in occupational therapy. As reported by Nichols et al. (2021), parents of children with disabilities have demonstrated increased parental stress which can present as difficulty with being in the moment with their children, specifically during play. A mindfulness approach would be beneficial to help parents develop strategies to be present in the moment at any point with simple mindfulness-based exercises and tasks. These tools are meant to provide relief from stress, not add to the parents responsibilities; therefore, it will be imperative to emphasize to parents both the simplicity of mindfulness along with its effectiveness. Model The chosen model for this study is the Model of Co-Occupation, created by Pickens and Pizur-Barnekow (2009). This model focuses on three categories of interrelated social occupations: parallel occupations, shared occupations, and co-occupations. Of these three, we will be specifically focusing on co-occupations, which require two or more people to be active agents during the occupation. As mentioned above, play for a child with a disability can look different, often requiring the caregiver to be more actively engaged with the child during play. Pickens and Pizur-Barnekow (2009) talk about the importance of co-occupations between mothers and children as imperative to the childs growth and development (p. 151). Play is a critical co-occupation between a child and caregiver, where both are actively engaged. Pickens and Pizur-Barnekow (2009) also make a proposition specifically toward children with disabilities, writing, Impairment or disability across the lifespan may influence how cooccupation is manifested and co-occupation has the potential to influence disability outcomes'' (p. 154). Understanding that co-occupations for children with disabilities may be different than typically developing children supports the need for understanding what these differences may look like. These understandings can lead to how we can better support caregivers in being successful in engaging in play with their children. This model provides support for the importance of co-occupations between children and caregivers, along with addressing that these co-occupations can look different due to a disability. Occupational Therapists Role Occupational therapists primary goal is to help clients engage in their chosen occupations. When aspects of an individuals life, such as activities of daily living (ADL) or instrumental activities of daily living (IADL) are impacted by anxious thoughts and feelings, occupational therapists provide extensive support and treatment to these individuals. While occupational therapists do not diagnose anxiety, occupational therapists play an important role in helping clients with anxious feelings manage their symptoms and minimize the overwhelming impact on the clients occupational performance. In this study, anxious feelings experienced by parents were the predominant barrier identified while participating in the co-occupation of play with their child. Play has an integral role in the development of children across all developmental domains and is the primary occupation for a child. While the literature indicates that parental anxiety is occurring while parents play with their child with a disability, there are little to no interventions focused on helping reduce anxiety during play. The purpose of this study is to explore the effectiveness of utilizing a mindfulness-based intervention that is focused on the co-occupation of play, specifically when looking at parental coping skills, self-efficacy, and anxious feelings. Method Participants For this study, parents who have a child with a disability were recruited. The parents were required to be at least 18 years old, with a child or children with a disability between the ages of two and twelve years old. All participants were required to speak English. To recruit participants, we reached out via email, posted flyers at local Indianapolis occupational therapy clinics, and advertised on various social media accounts. We recruited two participants who were each the mother of a child with Down syndrome, ages six and eleven. This study (#10676) was approved by the University of Indianapolis Human Research Protection Program (HRPP). Study Design The study was guided by the following questions: Is MBI a useful tool to decrease parents anxious feelings during play with their child? We hypothesized that MBI will provide effective coping mechanisms for parents and decrease anxious feelings during play. The study design consisted of caregiver recruitment, followed by virtual delivery of mindfulness-based interventions for caregivers, and concluded with a virtual post-intervention survey after six weeks. Measures and Procedures Before the session, both participants received a sample mindfulness breathing activity to try with their child and a video discussing the basic concepts of mindfulness. The researcher-led session was completed virtually in a single session format and lasted approximately one hour (see Figure 1). Participants were asked open-ended questions by researchers to gain insight into their levels of stress and anxious feelings experienced during play, how mindfulness activities impacted them and their anxious feelings, and the feasibility of using these techniques during play. Researchers first conducted the 5-4-3-2-1 mindfulness activity (see Appendix) that could be used by participants when playing with their children. This activity incorporated grounding techniques, meant to lower stressful or anxious feelings during play. Follow-up questions regarding the grounding techniques were asked by the researchers to reflect on how participants could incorporate the mindfulness approach into their everyday routines. Following this activity, the researchers introduced a self-compassion practice and discussion that allowed participants to reflect on their emotions, recognition, and reflection. At the end of the session, participants reflected on the feelings they experienced while playing with their child, the impact mindfulness has on their stress and anxiety levels, and how these techniques could be incorporated into their daily lives and, more specifically, during play. After the session was complete, the participants were provided with an evidence-based practice journal article called Healing Parent-Child Relationships Through Mindfulness (Smith, 2021). This article was provided to the participants as a resource, showing the benefits of mindfulness and several activities that parents can engage in with their children. The participants were also provided with a link to additional mindfulness activities to be used on their own for them to gain more experience with mindfulness-based practices. These activities can be found in the Appendix. Six weeks after the researcher-led session was completed, participants received a virtual survey to assess the carryover of mindfulness techniques and how mindfulness has since impacted their daily lives. Within the survey, participants were asked about their perspectives on the mindfulness-based exercises that they were requested to complete before the session with their child. Figure 1 Mindfulness Curriculum for the Virtual Session Data Analysis Qualitative data were collected through the transcriptions of the audio recording of the intervention session. Due to the limited number of participants, the research team decided to focus primarily on the responses from one participant. Researchers analyzed her responses to the semi-structured interview questions provided during the session. After the responses from the first case study were examined, researchers compared them to the responses found in the second case study. Differences between the two participants were then highlighted and described. The follow-up survey was completed by both participants six weeks after the initial session. Researchers collected qualitative and quantitative data to address the carryover of mindfulness activities in the home and their effectiveness. Once the responses were submitted, researchers analyzed the results to determine similarities and differences between the participants responses. Findings Case Study 1 (Sharon & Sabrina): Sharon is the mother of Sabrina, an 11-year-old child with Down syndrome. Although Sharon had previous exposure to mindfulness before the intervention session, she expressed her excitement to learn more about how to incorporate mindfulness-based interventions into her and Sabrinas routines. Specifically discussing her play with Sabrina, Sharon stated, I definitely probably struggle with that more in the area of play and engaging with my child. Like sometimes I really have to think with so much going on. It's hard to stay in the moment. Sharon mentioned being distracted by her phone or cleaning commonly takes attention away from Sabrina while they play. Though these are her more typical distractions, Sharon describes her solution of focusing on Sabrina and, the pride and joy that I feel with all the stuff that she's doing. That's usually my grounding piece. Sharon described herself as a perfectionist which can be specifically seen in feelings of guilt surrounding play if its not therapeutic enough. On the other hand, being a part of a local Down syndrome parent organization has helped Sharon to let go of other unspecified parenting mistakes. Overall, Sharon responded positively to the mindfulness interventions performed in the session but did not think the pre-session breathing activity was as successful in comparison to other intervention ideas provided. The main issue Sharon addressed was the lack of compliance from Sabrina when attempting the activity together. During the 5-4-3-2-1 activity, Sharon reported feel[ing] more relaxed and in a better mood. One aspect of the 5-4-3-2-1 activity Sharon did not like was the five things she saw section because she felt her surroundings were cluttered, and this increased her anxious feelings because she was now thinking of all the other things she should be doing instead. Additionally, Sharon enjoyed the Self-Compassion experience, stating that self-compassion can be used to create a more positive and mindful environment. Sharon is only raising one child, Sabrina, and she explains that she has nothing to compare it to. From years 0-4, she was still coming to terms with the diagnosis, but each year she feels that she experiences an increase in personal growth. Sharon states that she has: A lot more compassion when it comes togiving people grace and stopping to smell the roses and just likeenjoying the slow route, I guess. And without Sabrina, I would never have been okay with the pace of my current lifeso it makes me a lot more patient with other people and what they're going through. When asked about self-compassion, Sharon explained that comparing her own family with other families is the hardest thing she deals with. Because the Down syndrome community is very tight-knitwe have an amazing community especially compared to other disability group(s). There are families in ourcommunity whose kids are like academically light years beyond where my daughter is, and they're younger than my daughter and they're doing all of these therapies every single day and their parents don't work and basically homeschool them in addition to all the stuff they do at school. Regarding play, Sharon feels that she does a great job letting Sabrina participate in play like a typically developing child and does not make play activities therapy-based. During the self-compassion activity, Sharon and Lola both showed physical signs of emotion during the activity. Sharon explained that she does not give herself enough positive selftalk. There is a lot to balance required as a mother, and for Sharon, her job is a large stressor and distraction. Another instance where Sharon feels she struggles with anxious feelings is out in public. She states, I think my most anxious and stressful time with Sabrina is when other people are around. She also indicated that, I want perfection out in public and as a result, that's probably when I look my worst as a parent. Sharon feels the pressure to be successful and good and put on a good show in public. Sharon also says there are times that she cannot understand what Sabrina is saying, and this results in frustration for both parties. The guilt Sharon feels from these occurrences ties back to the fear that she did not put her in the right, best, or earliest speech therapies she could have. It is seen through the session results that both participants experience a lot of stress for similar or different reasons. In the follow-up survey, Sharon marked the following as stressors present during play: (a) thinking about other things I should be doing, (b) wanting to avoid play, and (c) thinking about potential delays of your child. Sharon commented that she used mindfulness techniques once a day, with the 5-4-3-2-1 Exercise, the STOP Exercise, and additional activities from the mindfulness activities link (see Appendix) being the most beneficial. When asked about the effect on parent-child relationships, Sharon stated, When I am calm and less stressed, I am a better mom. Additionally, she stated, I was amazed at how impactful it was even thinking back to an issue that had happened previously. It helped me realize that taking a moment, in the moment, to give myself grace can be so freeing, when referring to the value mindfulness has added to her life. Case Study 2 (Lola & Lyle) Lola is a single mother to her 6-year-old child Lyle, who has Down syndrome. In comparison to Sharons self-perspective, Lola views herself as less emotional. She expresses that like Sharon, she focuses on putting more of her effort into her child rather than into herself. Lola explained to researchers how good it felt to let go of emotions during the activities completed. There were some notable differences between Sharon and Lola. One of these concerns was that Lola experiences worries about other kids mistreating her son. She gives an example that there was one boy who was really sweet and another little boy came making fun of Lyle, and I was getting anxiety just from really watching the other kids. Another difference is Lola faces difficulty at home with Lyles defiant behavior which causes her to experience anxious feelings as opposed to Sharons anxious feelings in public places. Another large concern from Lola is that she cannot physically manhandle him to do what he needs to do for fear that she will harm him or herself. Lola lastly expressed that her biggest challenge with her son comes during transitions of activities. In the follow-up survey, Lola explained that her stressors during play with her child include: (a) hurting or being hurt by her child, (b) feelings of frustration, and (c) thinking about potential delays of her child. Lola stated that she integrated mindfulness-based interventions, more specifically breathing work and observation activities, once a day. The most impactful intervention completed during the session was the Self-Compassion Exercise. Lola felt it was reaffirming to her as a mother and reminded her of the accomplishments and goals she is meeting every day. Discussion Impact of Mindfulness on Play and Routines Romn-Oyola et al. (2018) report that play is the primary occupation for children and interaction influences the parent-child relationship. Promoting these interactions can have a systemic impact on this necessary relationship, reducing the likelihood of anxious feelings experienced by parents during play with their children with a disability. The goal of the researcher-led session was to help parents combat these stressors by incorporating mindfulness activities into their day. Our findings support the use of these mindfulness techniques during play, whether that is in a public or private setting, as it provides the ability to alleviate stressful and anxious feelings experienced by the parents. Based on the follow-up results, both participants practiced mindfulness once a day, adding value to their lives through feelings of being refreshed and/or liberated. Responses to Specific Mindfulness Activities Parents perceptions and experiences of mindfulness-based activities determine how effective mindfulness practices will be (Bazzano et al., 2015). In research with children with disabilities, mindfulness-based techniques have shown that parents can intentionally attend to their child's problematic behavior, improve satisfaction with parenting skills and interactions with their children, and reduce the stress associated with caring for their children (Bazzano et al., 2015). Our findings highlight how parents of children with Down syndrome perceive mindfulness as part of their everyday routine, particularly playing with their children. We propose that to improve interactions during play with their children and decrease caregiver stress, mindfulness-based techniques may enhance intentional awareness in parent-child relationships. After completing a mindfulness exercise, participants indicated they were feeling more relaxed and in a better mood. Incorporating mindfulness-based techniques into a daily routine has been shown to have many benefits, as many parents report that mindfulness practice has helped them slow down, notice impulses before they act, really listen to their children, and come to a more relaxed and peaceful state of mind when they interact with their children (Neece et al., 2019, p. 13). As with Neece et al. (2019), participants in our study noted that even though changing their routine to do mindfulness activities with their child throughout the day was different and took more time, it helped parents improve perceptions of their child's behavior and reduce overall stress. In the follow-up surveys, both participants found the mindfulness exercises helpful and relieving their anxieties during play and interactions with their child. One participant reported that the Self-Compassion exercise was most beneficial to her as it helped to create a relaxing, calm environment, and she was able to fully engage in mindful thinking. Similarly, the other participant exhibited positive feelings after completion of the Self-Compassion activity as it allowed her to let go of her emotions throughout the activity. The Self-Compassion activity had the most impact on the participants as it reaffirmed their primary roles as mothers, which allowed them to build compassion for themselves as well as build resilience, equanimity, and determination. Self-Compassion Though self-compassion was not originally a focus of this study, it came to be a large barrier that the parents reported facing daily. Self-compassion is defined as being touched by and open to ones suffering, not avoiding or disconnecting from it, generating the desire to alleviate ones suffering and to heal oneself with kindness (Neff, 2003, p. 87). A lack of selfcompassion can cause parents to experience additional anxious feelings. The parents in this study were more worried about themselves and their performance as a parent than they were about their children. Additionally, Stenz et al. (2022) looked at self-compassion in parents who had children with psychological disorders and found that increasing self-compassion can reduce the stress that these parents experience daily. As demonstrated in the virtual intervention session, mindfulness can be a means for encouraging parents to engage in self-compassion. As noted in the results, there was an obvious emotional release following the self-compassion activity that was viewed by the participants as an overall positive experience. A parents internalized expectations can lead to an overwhelming amount of pressure to be successful with little room for error. Self-compassion directly addresses the need for patience and grace for parents for them to have the same attitude of patience and grace toward their children. Willards (2017) work guided our self-compassion activity and states, I work to be a good parent, and I may not be perfect, but I am a good-enough parent (p. 154). Self-compassion is addressing the root problem of unrealistic expectations in parents to alleviate anxious feelings that may present during play. Anxious Feelings Previous research explains that parents of children with disabilities encounter anxious feelings throughout their daily lives from stressors beyond their control (Nichols et al., 2021). Additionally, Sarang et al. (2020) found that MBI interventions provided benefits to parents of children with disabilities by decreasing anxious feelings. Within our study, the parents reported anxious feelings when trying to enforce appropriate behavior both in the home and in public, as well as play in public settings. The collected qualitative data in our study is supported by the findings of Sarang et al. (2020) as the parents responded positively to the MBI activities by stating feelings of relaxation and improved mood at the conclusion. Limitations A limitation of the current study includes a limited sample size indicated by only having two participants who both identify as female and mothers to a child with Down syndrome. By only having mothers participating in the study, limitations in gender differences are present in the responses. Both participants focused on how stress and anxiety impact their psychological view of themselves specifically as mothers. This sample was also narrowed because both children of the participants have a diagnosis of Down syndrome. The participants for the case studies were also from the same geographical area which limits the ability to generalize the results. Another limitation of this study is the limited follow-up with participants after the conclusion of the initial session. The follow-up survey was provided to participants six weeks after the initial session, limiting this study to a short time frame for mindfulness impacts to influence both the parents and their children. By not gathering data with an extended time frame or through additional follow-up interactions, support for the impacts of mindfulness on play and routines was limited to initial effects. Therefore, generalized effects on the anxious feelings of participants long-term are not fully understood in the scope of this study. Lastly, while gathering the data, researchers did not utilize standardized assessment tools. The data collected was primarily qualitative self-reporting obtained during the virtual session and through the completion of a researcher-developed follow-up survey. These methods of data collection are limited due to relying on how much the participants are willing to disclose through conversation and self-reporting measures. There is an underrepresentation in the literature on parents of children with disabilities and how mindfulness interventions provide benefits specifically during play. Future recommendations for assessing this population include a larger, more diverse sample size. This may include fathers or foster parents, children with different diagnoses, caregivers from different locations, and more diversity in race, ethnicity, age, education, and socioeconomic status of parents. Including the children of the participants in a session may provide a view of parent-child interactions and anxious feelings that may arise specifically during play, as well as help participants better understand how to incorporate the child into mindfulness-based activities. It is recommended to continue using a virtual platform to assist with participant recruitment and follow-up interactions including additional sessions and surveys. Conclusion The findings of this study indicate that mindfulness-based activities for parents of a child with a disability can decrease anxious feelings during the co-occupation of play. We observed both a positive physical and emotional impact on caregivers during the virtual mindfulness session. Both participants indicated in the follow-up survey that at least three, if not all, of the mindfulness-based activities completed with researchers were advantageous to them. It would be beneficial for future studies to examine mindfulness-based intervention strategies and their effect on anxious feelings experienced by caregivers with a more quantitative measure of anxiety during play. It may also be beneficial to examine the effects of prolonged use of mindfulness techniques on the anxious feelings of caregivers. The scope of occupational therapy includes addressing mental health and dimensions of well-being that may negatively impact an individuals everyday roles and task completion. Play is viewed as an important co-occupation between parent and child for both individuals. Therefore, addressing the influence of anxious feelings on play for parents addresses multiple aspects within the scope of occupational therapy. 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American Journal of Engineering Research, 3(3), 245-250. https://doi.org/10.13140/RG.2.2.15056.92161 Romn-Oyola, R., Figueroa-Feliciano, V., Torres-Martnez, Y., Torres-Vlez, J., EncarnacinPizarro, K., Fragoso-Pagn, S., & Torres-Coln, L. (2018). Play, playfulness, and selfefficacy: Parental experiences with children on the autism spectrum. Occupational Therapy International, 2018(4636780). https://doi.org/10.1155/2018/4636780 Sarang, S.D., Karnam, A., Vanmali, B., & Phulpagar, P. (2020). Effect of mindfulness-based stress reduction occupational therapy program in parents of children with autism spectrum disorder: An interventional study. The Indian Journal of Occupational Therapy, 52, 132 - 138. https://doi.org/10.4103/ijoth.ijoth_25_20 Smith, S. (2021). Healing parent-child relationships through mindfulness. International Journal of Birth & Parent Education, 8(4), 2932. Stenz, C. F., Breitmeyer, A. M., & Jansen, K. L. (2022). Parenting stress and self-compassion in parents of children with and without psychological disorders. The Family Journal, 31(2), 308313. https://doi.org/10.1177/10664807221123557 Tamm, M., & Skr, L. (2000). How I play: Roles and relations in the play situations of children with restricted mobility. Scandinavian Journal of Occupational Therapy, 7(4), 174-182. Willard, C. (2017). Raising resilience: The wisdom and science of happy families and their thriving children. Sounds True. Appendix Mindfulness-Based Activities Provided to the Participants Title of Activity Description Self-Compassion Letter to Self Sit in a comfortable setting and think through the details of a difficult parenting situation, reflecting on that moment. When thinking of this time, remind yourself, you are a good-enough parent and all parents struggle. Take a few more grounding breaths, recognizing any physical or emotional feelings that arise. Grounding and Centering Exercise Find a comfortable, quiet space. Stand up and notice the feeling of the ground beneath your feet. Slowly shift your weight back and forth and bring awareness to this sensation. Begin to notice how this shift in weight affects your legs, hips, and lower stomach. S.T.O.P. Exercise S.T.O.P. is an acronym standing for Stop what you are doing, Take a few deep breaths, Observe your bodys physical and emotional sensations, and Proceed with what you were doing once you feel grounded. Feel Your Hand Activity Sit in a comfortable position and close your eyes. Take your right hand and stroke your left hand for a few seconds. Switch hands. Continue to repeat this process for several minutes to help bring yourself to reality. Name a Goodie This activity can be completed within a group of individuals or alone. Participants go around the circle naming something that is good or positive in their life (ex. A smell, something they had to eat recently, getting engaged, etc.). Remember what you pick does not have to be positive for everyone. Adult Coloring Find an adult mindfulness coloring page or create your own to color. Pay attention to your senses as your are coloring- what you see, hear, smell, feel, and taste. To increase the sensory experience, you may add scented oils or markers, food, beverages, or music. One Big Mindfulness Day Set aside one day every week to focus on mindfulness activities that help you feel grounded. These activities can vary from person to person, or even day to day. Candle Study Exercise Light your favorite scented or unscented candle and observe how the flame flickers. Complete this for five to ten minutes, allowing your mind to wander and observing the thoughts that drift through. Gratitude Scavenger This activity can be completed alone or with your child. During this Hunt activity, there are numerous things to be searching for including: something you enjoy first thing in the morning, something that makes you happy, something you enjoy playing with, your favorite game to play, a place you feel the most comfortable, etc. Walking Meditation Find a walking path where you will not be disturbed. Take ten-fifteen steps or propel yourself twenty to forty feet and stop, breathing for as long as you need. When ready, repeat this movement and focus on making small, slow movements. During these slow movements, observe one or more sensations that you would normally take for granted. It is okay for your mind to wander during this mediation. Adjustments can be made to this daily walk to fit the individuals needs for that day. Acceptance of Thoughts and Feelings Sit in a comfortable place and focus on your breath. Allow your mind to wander, noticing each thought that passes by. Guide your attention back to the sensation of breathing and bring a quality of compassion to your awareness. As you become aware of various bodily sensations that arise, shift your attention to these sensations briefly. Acknowledge the comfort or discomfort that surfaces and begin to differentiate yourself from your thoughts and feelings. Without judgment, label the thought or feeling and move on. Remind yourself you are not what those thoughts or feelings convey to you. Mindfulness Parenting Tool Kit The mindfulness tool kit is something you and your family can create together that will include various mindfulness activities you and your family enjoy. There is not a limit on how many activities are needed, just make sure they are meaningful and beneficial. The Body Scan Find a comfortable and quiet place to complete this activity. It can last anywhere from five to thirty minutes depending on the style you choose. A typical body scan will have you lying on your back and focusing on different parts of your body at a time, starting from your feet and slowing making its way to your head. Morning Page Every morning when you wake up write whatever comes to mind. What you write does not have to be creative or have any structure as long as it is helpful and meaningful to you. Three-Minute Breathing Space Find a comfortable and quiet space to help you relax and feel grounded. During these three-minutes, you will start with closing your eyes and thinking about what you are doing. Bring your attention to your breathing, making sure to take deep breaths in through your nose and out through your mouth. Shift your attention to how your body feels and focus on the environment around you. Who Am I Beyond My Formatted questions are provided, focusing on self-reflection. Anxiety Reflection These questions have you list positive characteristics about yourself, activities you do and do not enjoy, describe which relationships in your life are most important to you and why, and what you feel like you are best at.  ...

... Examining Occupational Therapists Perception of Efficacy in Telehealth During the COVID-19 Pandemic Lauren Gandhi, Samantha Rich, Alexandria Dattilo, Karlie Hamilton, Kirstin Krause, Eric Meyers, Brynn Shallenberger December, 2023 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: Lori Breeden, EdD., OTR Examining the occupational therapy perception of efficacy in telehealth A Research Project Entitled Examining Occupational Therapists Perception of Efficacy in Telehealth During the COVID-19 Pandemic Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Lauren Gandhi, Samantha Rich, Alexandria Dattilo, Karlie Hamilton, Kirstin Krause, Eric Meyers, Brynn Shallenberger Doctor of Occupational Therapy Students Accepted on this date by the OTD Program Director: 12/7/23 Alison Nichols, OTR, OTD OTD Program Director Associate Professor of Occupational Therapy Date 2 Examining the occupational therapy perception of efficacy in telehealth 3 Examining the Occupational Therapy Perception of Efficacy in Telehealth During the COVID-19 Pandemic Lauren Gandhi, Samantha Rich, Alexandria Dattilo, Karlie Hamilton, Kirstin Krause, Eric Meyers, Brynn Shallenberger School of Occupational Therapy, University of Indianapolis Author Note Lauren Gandhi, School of Occupational Therapy, University of Indianapolis, https://orcid.org/0000-0002-7104-5084 Samantha Rich, School of Occupational Therapy, University of Indianapolis, https://orcid.org/0000-0002-5513-5100 Alexandria Dattilo, School of Occupational Therapy, University of Indianapolis, https://orcid.org/0000-0001-7847-2460 Karlie Hamilton, School of Occupational Therapy, University of Indianapolis, https://orcid.org/0000-0002-5072-3720 Examining the occupational therapy perception of efficacy in telehealth Kirstin Krause, School of Occupational Therapy, University of Indianapolis, https://orcid.org/0000-0003-2775-6599 Eric Meyers, School of Occupational Therapy, University of Indianapolis, https://orcid.org/0000-0001-8905-4037 Brynn Shallenberger, School of Occupational Therapy, University of Indianapolis, https://orcid.org/0000-0001-6645-6607 4 Examining the occupational therapy perception of efficacy in telehealth 5 Abstract Background: During the COVID-19 pandemic, clients relied on telehealth to gain access to health care services. As telehealth continues to be used it is important to understand how to implement quality sessions. This study aimed to identify practitioner needs related to the development of telehealth skills. Methods: Participants included occupational therapy practitioners who used telehealth in practice. Snowball sampling was used to recruit participants for semi-structured interviews. Thematic analysis of the interview transcription resulted in categories which were a focus of discussion during interviews. Findings: Data analysis led to five thematic categories. These were: Telehealth barriers and benefits, Telehealth value on a scale, Logistics of the telehealth transition, Client readiness for telehealth participation, and Educating caregivers and supporting their participation via telehealth. Conclusion: The information revealed through this study supports occupational therapy practitioners in their understanding of how service delivery can change with telehealth. Considering ways to modify occupational therapy practice could make telehealth an effective tool instead of an inadequate alternative to in person delivery. Examining the occupational therapy perception of efficacy in telehealth 6 Examining the Occupational Therapy Perception of Efficacy in Telehealth During the COVID-19 Pandemic During the COVID-19 pandemic, telehealth was an option for individuals to gain access to health care services without risking exposure to the virus. In Indiana, OT practitioners had no history using telehealth until Governor Eric Holcomb issued an executive order, authorizing its use (Exec. Order No. 20-13, 2020). The American Occupational Therapy Association (AOTA) identified telehealth as a valid delivery method of occupational therapy services and provides occupational therapists with resources for telehealth (Cason et al., 2013). As healthcare systems continue making adjustments to practice during a pandemic occupational therapists may continue to use telehealth as it allows flexible scheduling and practitioner satisfaction with interventions (Hoel et al., 2021). Traditionally, the physical engagement of occupational therapists with their clients was viewed as essential to providing occupational therapy services (Dahl-poplizio et al., 2020); during the pandemic, in-person interventions were less possible, which forced many practitioners to learn to adapt their strategies using trial and error rather than a traditional evidence based approach (Dahl-poplizio et al., 2020). OT practitioners expressed frustration with the use of telehealth as a delivery method during the pandemic and many experienced barriers to providing effective interventions (Breeden et al., 2023). The COVID-19 pandemic created an emergency use situation and practitioners felt under-prepared to perform well using telehealth as a means of service delivery (Hoel et al., 2021). Our methodology is based on a phenomenological approach, however, the adoption of telehealth by practitioners was examined through the lens of social constructivism (Amineh & Asl, 2015). Social constructivism explains the ways individuals create meaning from their Examining the occupational therapy perception of efficacy in telehealth 7 experiences based on interactions with other people and the environment around them (Amineh & Asl, 2015). The meaning practitioners derive from their experiences with telehealth as a rehabilitation tool can be influenced by their positive and negative interactions. The purpose of this qualitative study was to examine occupational therapists perceptions of using telehealth during the COVID-19 pandemic. This study aimed to identify occupational therapy practitioner needs related to the development of telehealth skills. This study aimed to make recommendations about the direction of continuing education for telehealth to allow practitioners a smoother transition into OT service delivery in the virtual world. Key Words: Telehealth, Occupational Therapy, COVID-19 Telehealth is the use of audio and video equipment to provide healthcare-related services over a virtual platform (What is telehealth, n.d.). Occupational therapy is the use of rehabilitative services to increase participation in daily living, often through the physical manipulation of the environment and/or the client during treatment sessions (Definition of occupational therapy practice for the aota model practice act, n.d.). Literature Review Between 2012-2019, prior to the COVID-19 pandemic, most telehealth users were those who lived in rural populations (Chu et al., 2021). Although people in rural populations increased their use of telehealth during the COVID-19 pandemic, the greatest increase during this time was found in urban populations (Chu et al., 2021). Telehealth use increased in all age categories since 2019, but the biggest increase was seen in older adults aged 65+, likely due to restrictions during the COVID-19 pandemic for this high risk age group (Chu et al., 2021). Examining the occupational therapy perception of efficacy in telehealth 8 There were many perceived barriers to the switch to telehealth use. According to Iacono et al. (2016), the majority of OT practitioners surveyed were hesitant to use telehealth due to the risk of poor client-therapist relationships. Difficulties were also identified with supervising patients and privacy concerns (Rortvedt, 2019). Technical difficulties, lack of physical contact, caregiver involvement, and lack of universality for all patients were reported as perceived barriers of the use of telehealth (Dahl-popolizio et al., 2020). Abbott-Gaffney & Jacobs (2020) found internet reliability, lack of physical contact, lack of licensure portability across states, and inappropriate referrals as barriers. Additionally, client factors such as finances and caregiver assistance, and workplace needs associated with updated technology and tech support were identified as barriers to using telehealth (Goel et al., 2022). Access to technology and funding were also identified as perceived barriers (Hoel et al., 2021). Although there were many barriers identified, there were also benefits that came with the use of telehealth. Worboys et al. (2017) found that the majority of occupational therapists surveyed were satisfied with telehealth services and found ease of equipment use and appropriate audio quality. Of the occupational therapists surveyed, 83% expressed that they were able to satisfactorily and competently assess patients (Worboys et al., 2017). Schedule flexibility was also identified as a perceived benefit (Rortvedt, 2019). Proffitt et al. (2021) reported that occupational therapists perceived the lack of traveling out to clients as a benefit of telehealth. Occupational therapists perceived an increased correlation between telehealth use and safety as well as reasonable employer expectations as benefits (Hoel et al., 2021). Abbott-Gaffney & Jacobs (2020) reported efficiency, student engagement, and comfort as perceived benefits to telehealth. Goel et al. (2022) identified that for patients with spinal cord injuries, telehealth was Examining the occupational therapy perception of efficacy in telehealth 9 beneficial for access to care, safety, carryover of care, and patient education in activities of daily living and instrumental activities of daily living. Occupational therapists have identified several diagnostic groups that have benefitted from telehealth during the pandemic. These included: patients with hand injuries (Worboys et al., 2017), patients with spinal cord injuries (Goel et al., 2022), pediatric settings (Dahl-popolizio et al., 2020), patients with developmental delays (Dahl-popolizio et al., 2020), and school settings (Abbott-Gaffney & Jacobs, 2020). Based on the perceived benefits and barriers to the efficacy of telehealth, this type of practice delivery is perceived as a productive tool for specific populations. More research is needed on individual capabilities of clients in order to determine if using telehealth is appropriate for treatment. Although perceptions of benefits and barriers to telehealth have been examined, there are no clear conclusions of efficacy. There is a gap in the literature that prevents us from moving beyond the general mechanics of telehealth practice and examining how OT practitioners manage the challenges. This study examined the experience of success and failure within telehealth practice to identify practitioner needs and better prepare future practitioners for this method of service delivery. Methods Study Approach/Design The study was guided by a phenomenological approach, which gathers individuals experiences of the same phenomenon and the meaning of those experiences to the individuals (Creswell & Poth, 2018). The phenomenological approach seeks out key elements common in most, or all, of the individuals experiences of a phenomenon (Creswell & Poth, 2018). This Examining the occupational therapy perception of efficacy in telehealth 10 study aimed to analyze the data by looking at the interactions the participants had with their environment, employers, peers, and clients, through telehealth. The data was viewed through the lens of social constructivism. Social constructivism was used to analyze qualitative data by theorizing that people make meaning in their reality by interacting with their environment and the people around them (Amenineh, R. & Asl, H., 2015). We demonstrated trustworthiness through member checking, analysis of reflexivity journals, and the use of an audit trail (Krefting, 1991). Participants Six occupational therapy practitioners were interviewed as participants in this study. An occupational therapy practitioner was an occupational therapist or an occupational therapy assistant with no minimum of practice experience in the field. The occupational therapy practitioners were required to have used telehealth at least once. Participants were recruited using social media and snowball sampling (Patrick, et al., 1998). We placed recruitment posts on CommunOT and other OT discussion boards, OT Hub and groups on Facebook, as well as local professional association meetings. Procedures Six participants from multiple occupational therapy settings were interviewed in-depth regarding their experiences in telehealth. We used field notes, member checking, and reflexivity journals from their interviews to insure trustworthiness (Krefting, 1991). Data Collection Researchers used semi-structured interviews to obtain in-depth information from each participant (Alshenqeeti, 2014). The interviews allowed participants to explain topics in their own voice, as well as for the interviewer to ask clarifying questions and access complete Examining the occupational therapy perception of efficacy in telehealth 11 answers; semi-structured interviews also allowed for the interviewer to dig deep into topics that a structured interview cannot (Alshenqeeti, 2014). A second researcher was present during interviews to manage the audio recording and take field notes (Krefting, 1991). The study was determined to be exempt by the institutional review board at the University of Indianapolis. Informed consent documents were not signed by participants as it would have been the only identifying information connecting the participants to the study. Prospective participants were informed that their participation was voluntary, and they were free to end their participation at any time. Data from the interview (recordings and transcription) were stored in a password protected computer in a locked office. Recordings were deleted after transcription was completed. Any identifying information from the recordings was given an alias during transcription. Each member of the research team reflected on and disclosed any bias they had for telehealth, the participants, and the project in general through reflexivity journaling. An audit trail was maintained during transcription and data analysis. Both measures were taken to increase trustworthiness. Data Analysis To guide our qualitative thematic analysis, we used the phases laid out by Braun & Clark (2006). The phases are as follows: familiarizing yourself with your data generating initial codes searching for themes reviewing themes defining and naming themes Examining the occupational therapy perception of efficacy in telehealth 12 producing the report (Braun & Clarke, 2006) Transcription occurred by two members of the research team who were not present during the interview. This transcription occurred within 24 hours, and analysis of the transcript, adequate to allow member checking, began within one week (Alshenqeeti, H., 2014). Working in pairs, researchers began coding interview transcripts and came to an agreement on codes. Following, the entire team cross compared codes for consistency. Groups of two from the research team individually coded transcripts and then compared codes together. Finally, the team came together and collaborated on a final code for the transcripts (member checking) (Krefting, 1991). Once coding was complete, memoing focused on the coded quotes as representation of action within the experience being shared. Using a dry erase board, concept maps of memos provided a visualization of participants' telehealth experiences. Findings Thematic analysis of interview transcripts led to five thematic categories regarding the use of telehealth during the COVID-19 pandemic: telehealth barriers and benefits telehealth value on a scale logistics of the telehealth transition client readiness for telehealth participation caregiver education and participation Telehealth Barriers and Benefits The interviews yielded patterns of reported barriers and benefits of telehealth practice among participants. As a benefit, Participant 5 (P5) reported experiencing professional growth while practicing Am I grateful for the things I have learned from experiences it brought? Examining the occupational therapy perception of efficacy in telehealth 13 Yeah. I do. I think Im a better therapist (P5). Additionally, another benefit that participants expressed was telehealth promoted occupation-based treatments, which was useful for functional task carryover. P5 discussed that they used more occupation-based treatment during telehealth use when they were required to go bagless and rely on what the patient had in their home to perform interventions. P5 said, I wouldve probably tried bagless soonerit kind of forces you to [be more flexible]. Participant 6 (P6) shared an example of their use of occupation-based treatment and explained that during the holidays, a patient needed to switch from an in-person session to telehealth due to poor weather. P6 shared their experience of providing occupation-based care by building their session around wrapping holiday gifts: It was really great because it was something [the patient] got to do for his grandkids and something he had always kind of done where he actually got to participate more that yearit was great cause it allowed me to see a whole bunch of different functions at the same time and really really be a purposeful activity, and that was not a mimic of something. Participants noted barriers to accomplishing a successful telehealth session. Participant 2 (P2) reported that a lack of hands-on access contributed to patients becoming distracted by other family members who were present during sessions. Often during the lockdown period parents were managing multiple children in the homes during a telehealth OT session. The same participant stated, ...during COVID their kids couldnt go anywhere else, cause daycares were closed, schools were closed. And so they're trying their best to pay attention they were doing the best they could. These types of recurring distractions for clients and caregivers led to practitioners feeling that they could not control the treatment environment well enough to provide effective treatment. Another barrier discussed throughout the interviews was that using Examining the occupational therapy perception of efficacy in telehealth 14 telehealth led to increased time for the evaluation process. P6 stated, I have yet to figure out how to do an assessment verbally. Furthermore, some evaluations were deemed by participants as a poor fit for virtual practice. P6 shared: [It] takes a skilled eye to then do it over camerahow can I have them do a nine hole peg test, to stack some blocks, the dynamometer, the pinch gauge, you know those things, the range of motion, that stuff I cant fill out remotely. These identified benefits and barriers left participants presenting their telehealth experience as inferior to traditional treatment but better than clients receiving no treatment at all. Telehealth value on a scale Patterns surfaced across participants including preparation, skepticism, and success or a lack thereof when utilizing telehealth. The patterns revealed a perception that telehealth was a better alternative for clients to receive services versus not at all. As pandemic protocols evolved, healthcare practitioners developed an awareness that virtual sessions needed to be intentionally managed. Participant 3 (P3) offered, I dont think zoom will ever go away now, its here to stay you have to adapt. P2 suggested that the abrupt shift to telehealth during the pandemic left them feeling like a new practitioner or student again. However, P5 was grateful for the experiences telehealth brought, and believes that they are a better therapist because of it. P6 explained that although building rapport is difficult over the computer, it is getting better and people are getting more comfortable. P6 also noted that the home environment is a safer space for the client and may give more insight into actual functioning than what is seen in the clinic. Some participants are still skeptical of virtual delivery and they do not see telehealth as productive as in-person care. P2 states Im assuming though if I were doing real techniques with them then after a few [telehealth] visits, we would get it, whereas maybe it wouldve only Examining the occupational therapy perception of efficacy in telehealth 15 taken me one [visit] in person. P6 explained their reasoning for patients that are well vs. poorly suited for telehealth: As we weigh modalities and other things, theyve all got pieces and roles and have parts where its more appropriate than others. They closed with this statement: As long as I think we keep the patient at the center, so patient-centered care, and you take a look at it as a way of, is this a tool that helps them or doesnt help them and how can we modify and adjust it? Then thatll serve us fine with any kind of new technology that comes through. So you keep that at your center and the center of what you do and, you know, being an OT, and the rest falls into place. Based on their experiences with using telehealth, practitioners feel that telehealth visits were better than patients not receiving care, but traditional in-person occupational therapy is better than telehealth. Logistics of the Transition Some participants shared the idea that a lack of leadership during this telehealth transition revealed a stagnation in their organizations which limited care overall. In this case systemic stagnation refers to their healthcare system experiencing a bottleneck in the flow of providing occupational therapy services after evaluations were conducted. The inability of the healthcare system to transition quickly and keep up with the demands of an unexpected healthcare crises was limiting to the provision of care. This became evident during the pandemic as healthcare providers quickly transitioned to online care. Participant 1 (P1) stated, It was just like were closing Friday and were starting telehealth, you know? For some, leadership stepped in and made this transition easier. P2 stated: Yeah they're really great about giving us such training about changing stuff. Of course, everybody has pitfalls and things get forgotten, and things like that. But this is definitely, Examining the occupational therapy perception of efficacy in telehealth 16 the company is on top of it. And they're sending things out ahead of time, which is really nice. Leadership from companies during the transition to telehealth was crucial for practitioners to provide quality care to patients. Participants who experienced a lack of leadership from their companies felt limited in providing care. An OT practitioner working in early intervention described ample use of telehealth for evaluation, but insufficient care providers to provide interventions. P5 described their experience: You know, an assessment team can see if you see four families a day for five days a week, youve seen 20 families. But then its 20 different families, and its another 20 families the next week, and another 20 families the next week. Where if youre seeing them ongoing, you may have those 20 slots but only 20 families. So in a month, Im seeing 20, theyre seeing, you know, what, 80. Transitioning to telehealth exacerbated this organizations disparity between evaluating and providing interventions for an exponentially growing list of clients. They expressed frustration with healthcare leadership to appropriately balance staffing allowing the provision of care to stagnate. Client Readiness The interviews also produced patterns that considered the clients readiness or lack thereof as influencing the success of telehealth sessions. Participants reported better outcomes with preparation of the client prior to the session either by the occupational therapist or through the client's engagement. P1 mentioned that they would drop things off on client porches, and their advice to the caregiver was to come up with as many, like, generic activities [to keep] in your toolkit as possible. P1 also mentioned the workload that goes into planning virtual sessions Examining the occupational therapy perception of efficacy in telehealth 17 may have slowed productivity, saying, I was only really seeing initially I would say two or three kids a day because besides their 45 minute treatment session, there was so much work going into the planning processes. Participants reported that parents began creating toolkits of things that could be beneficial for therapy sessions for their kids. P5 stated: I had one mom I was working with in person that got really excited about some of the stuff we were doing and then she would be at dollar tree or she would be at Walmart and see something and she would be like I wanna try this one! OT practitioners were forced to take a more active role in preparing their clients prior to treatment through the physical delivery of materials and through communication with caregivers. Caregiver Education and Participation Caregiver education and participation came up a number of times during practitioner interviews. Analysis revealed that when an occupational therapist did not have the ability to work hands-on with their clients, it seemed to create a sense of pressure for the caregiver to take on the therapist role during sessions. P3 noted, It is a lot more work for [caregivers]. P1 discussed how clients did not want to listen to their caregivers during sessions, saying, If the kid needed the parental support during their sessionthe kid doesnt really want to listen to the parent. That was, that was difficult. Participants noted they felt that telehealth supported caregiver education and impacted client progress. One participant discussed how caregiver education was completed during their sessions: I had a baby doll that I could use. Um its a training baby doll that we use for training clinicians, um, but I had one that I could kind of show them what I wanted them to do as well but yeah theres a lot of showing, a lot of a lot of tries. And then sometimes it just didnt go well. Examining the occupational therapy perception of efficacy in telehealth 18 P5 noted, Requiring [caregivers] to be more involved, I think, has been a benefit as well in terms of carryover. Furthermore, The parents who are getting down and dirty getting with the kid are the ones who make the best progress. When caregivers were properly educated, the participants reported that it increased the opportunity for them to be involved with the clients treatment which supported the clients overall progress. After analyzing the participants experiences using telehealth, five themes were identified. Benefits to telehealth were that it promoted professional growth and occupation-based treatments, which was useful for functional task carryover outside of therapy sessions. Barriers to telehealth were that a lack of hands-on access contributed to patients becoming distracted during treatment sessions. Telehealth was seen as better than nothing, but in-person was still preferred; some contributing factors were feelings of skepticism, preparedness, and success or not. Company leadership made a difference to our participants on whether telehealth was perceived as successful or not. The participants that had a supportive leadership team that provided them with structure and guidelines had a smoother transition into telehealth. For others, there was a stagnation in care due to a lack of leadership. Clients readiness or lack thereof influenced the success of telehealth sessions. Furthermore, when practitioners felt they had a strong company leadership they were able to prepare the client for sessions better. When an occupational therapist did not have the ability to work hands-on with their clients, it seemed to create a sense of pressure for the caregiver to take on the therapist role during sessions. Additionally, telehealth was found to support caregiver education and increase caregiver participation which impacts client progress and carryover in the home. Examining the occupational therapy perception of efficacy in telehealth 19 Discussion Findings consisted of five themes regarding telehealth use throughout peak COVID-19 pandemic. In comparing our themes to the current literature, we found additional support for many of our findings with a few exceptions. Telehealth Barriers and Benefits Data analysis revealed barriers and benefits to practicing telehealth secondary to COVID. One of the barriers practitioners identified was the lack of ability to physically guide clients during an intervention, which led to practitioners feeling they could not adequately control the treatment environment. Lack of physical contact with clients is reported as a barrier to treatment due to the information physical contact provides during evaluations, like joint end feel with range of motion (Rortvedt & Jacobs, 2019; Wittmeier et al., 2022). Our findings are supported by Rortvedt & Jacobs (2019) as participants reported they saw hands-on evaluation as the best way to assess a clients physical characteristics. Not having hands-on evaluations with patients, therapists were challenged to go outside of their normal practices in order to provide the most effective care. Another barrier identified by our participants was inefficiency with telehealth evaluations, which influenced overall productivity. Practitioners explained that evaluations took much longer during telehealth use if the evaluations were deemed valuable at all (Wittmeier, et al., 2022). Researchers reported athletic trainers did not find evaluations via telehealth as a useful practice due to their reliance on hands-on access to clients (Winklemann et al., 2020). Difficulty conducting evaluations over telehealth is a barrier supported by the current literature and our participants responses. Examining the occupational therapy perception of efficacy in telehealth 20 The final barrier our participants identified was the increased distractions to clients coming from family members. This barrier was influenced by the lack of hands-on access to clients, as it led to practitioners feeling ineffective without physical intervention. This theme is not supported or refuted by literature as a barrier, but participants reports suggest a relationship between distractions to clients and the lack of hands-on access to clients that practitioners experienced. Participants identified professional growth as a benefit of using telehealth. This idea is supported in the literature through reported challenges of using telehealth, which led to professional growth through expanding practitioners creativity and critical thinking (Wittmeier et al., 2022). Researchers found that therapists experienced professional growth through learning new skills and improved on existing skills, like coaching and teaching, especially with families of clients (Wittmeier et al., 2022). Through the opportunities telehealth provided for occupation-based care, our participants found better functional skill carryover as a benefit as well. Wittmeier et al. (2022) reported OT and physical therapy (PT) practitioners appreciated the benefit of seeing clients interact with their home environments. Some therapists reported it was easier to make recommendations based on what families had available in their homes (Wittmeier et al., 2022). Though therapists experienced professional growth through the use of telehealth and appreciated an increased use of occupation-based intervention, the lack of hands-on access, client susceptibility to distractions, and increased evaluation efficiency left participants concluding that while telehealth is better than receiving no treatment at all, it is inferior to traditional treatment. Telehealth value on a scale Examining the occupational therapy perception of efficacy in telehealth 21 Participants offered that while telehealth sessions were better than nothing, in-person sessions were preferred. Findings in this study are consistent with previous research. Physicians expressed skepticism with the lack of in-person evaluations; their main concern was the lack of in-person evaluation increasing the chance of missing symptoms and negatively affecting treatment (Goldberg et al., 2022). The reduced in-person treatment session had physicians concerned with missed signs and symptoms (Goldberg et al., 2022). This is consistent with our findings where the concern of reduced in-person care altered the treatment and intervention strategies. A second study that interviewed orthopedic physicians and athletic trainers also identified skepticism with the success of telehealth (Winklemann et al., 2020). Researchers found that the lack of hands on and in-person interaction increased skepticism of successful sessions (Winklemann et al., 2020). Researchers found that physicians expressed concern with telehealth not providing comparable care to patients virtually (Alqahtani et al., 2022). Clinicians in a mental health setting were skeptical when starting to use telehealth, finding a preference for in-person interactions with their clients over telehealth (Lynch et al., 2021). Despite overarching skepticism of the use of telehealth in practice, many providers agree the role of telehealth is beneficial in reaching clients although find it better than no contact for care at all. Overall, the current research confirms that clinicians prefer telehealth over clients not receiving treatment, but not as much as they prefer in-person sessions. Logistics of the Transition Participants in this study identified logistics of telehealth and organizational leadership regarding the telehealth transition as directly impacting service delivery. Hoel et al. (2021) found that for many providers, successful use of technology was hindered by limited knowledge of online platforms and procedures to organize telehealth delivery. Hoet et al. conducted a similar Examining the occupational therapy perception of efficacy in telehealth 22 study in which many respondents stated that they did not receive proper guidance during the urgent transition to virtual therapy. This supports the finding that organizational leadership was seen as making a difference when it came to the quality of services. In a qualitative study by Lynch et al. (2021), participants noted there was good conservation of care and they were able to successfully adapt the sessions to the individual client to produce better flexibility of the session time and duration. To maintain continuity of care and maintain HIPAA compliance, the administration developed resources and provided training to the clinicians (Lynch et al., 2021). The perception of leadership effectiveness, and its relationship to the transition to a telehealth platform is an opportunity for further research; however both topics were meaningful to participants in this study. Client Readiness Participants believed their sessions were more effective when they prepared the client prior to the occupational therapy telehealth session. The literature reflects that while some researchers found that preparation of the client led to more personalized care, others suggested that having the client prepare prior to the session might not be very effective (Goldberg et al., 2022; Hughes et al., 2020). Participants receiving telehealth cognitive-behavioral therapy (CBT) felt better about doing telehealth therapy when the clinician communicated the purpose of the activities (Hughes et al., 2020). In the current study the theme of preparing the client for the session is consistent with this previous literature. Goldberg et al. (2022) interviewed physicians who worked with the geriatric population who reported the need to retrain staff, or rely on volunteers to provide more pre-visit preparation and orientation to patients. Furthermore, physicians found no changes in digital literacy for older adults in use of telehealth (Goldberg et Examining the occupational therapy perception of efficacy in telehealth 23 al., 2022). Preparation of the client was identified by occupational therapy practitioners in this study as an important part of a successful session. Clinicians noted issues they faced when using telehealth included technology issues, human error with technology, changes in the environments of those involved with the session, how to transition techniques to be used virtually, and how to maintain regulations virtually (Waller et al., 2020). Some of the ways clinicians found they were able to alleviate issues with telehealth was having the client prepare by: having the equipment to write down information ready, preparing the device the client will use for the session, checking their ability to connect through their internet, having a safe space to participate in that is private, limiting distractions, and sending information prior to the session (Waller et al., 2020). Caregiver Education and Participation Caregiver education and participation in telehealth has been studied in previous research. Karlsen et al. (2018) examined the experiences of older adults and affirmed the theme regarding increasing pressure on caregivers: Family caregivers reported that [telehealth] eased their concern for a time. However, they felt increased responsibility which led to ambivalent feelings between wanting to comply with the older adults desire to live at home and the stress and concern this caused (p. 1300). Although caregivers were able to check in on the older adults during telehealth sessions, telehealth ended up increasing their stress. When an occupational therapist does not have the ability to be hands-on with their clients, it seemed to create a sense of pressure for the caregiver(s). Examining the occupational therapy perception of efficacy in telehealth 24 Another theme that was affirmed through the research was that caregiver participation increased progress for the client: active participation of the caregivers was considered critical to the success of the telehealth experience (Fergus et al., 2021, p. 162). Furthermore, the telehealth delivery of service seems to enhance the empowerment and buy-in of the patient/caregiver resulting in improved outcomes and carryover for PT (Fergus et al., 2021, p. 159). Previous research supports the importance of caregiver participation and education based on it supporting the clients overall progress. Conclusion Findings of this study provide insight into occupational therapy practitioners perceptions of telehealth use during the COVID-19 pandemic. This study identified practitioner needs related to the development of telehealth skills. Recommendations for practice include that employers develop and integrate training for practitioners to create consistent telehealth guidelines to support virtual practice. Additionally, this study identified that there may be a lack of efficacious evaluations suitable for virtual practice. Practitioners interviewed for this study were unaware of existing literature about evaluations in virtual practice. Furthermore, practitioners should prepare themselves for telehealth practice through existing evidence, continuing education, and understanding the practice guidelines that affect the provision of telehealth. Future research should include examining the psychometric properties of assessment tools when implemented virtually, as well as the design of interventions that better fit the virtual practice realm. Additionally, telehealth-specific training should be developed to ensure therapist competency in practice via telehealth. Examining the occupational therapy perception of efficacy in telehealth 25 Acknowledgements We thank the participants for their time and for providing stories of their experiences using telehealth during the COVID-19 pandemic. We also acknowledge Dr. Penelope Moyers for her support and encouragement during the early stages of our study. Examining the occupational therapy perception of efficacy in telehealth 26 References Abbott-Gaffney, C., & Jacobs, K. (2020). Telehealth in school-based practice: Perceived viability to bridge global ot practitioner shortages prior to COVID-19 global health emergency. 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... 1 Educational Interventions for Managing Ethical Problems in Occupational Therapy: A Survey Brenda Howard, Payton Berger, McKayla Hendricks, Allison Moll, Erin Rusconi, Abigail Shamdin, Julia Swindeman, and Zoe Cochran December 2023 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: Brenda Howard, DHSc, OTR, FAOTA EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 2 A Research Project Entitled Educational Interventions for Managing Ethical Problems in Occupational Therapy: A Survey 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: Dr. Brenda Howard, DHSc, OTR, FAOTA, Payton Berger, McKayla Hendricks, Allison Moll, Erin Rusconi, Abigail Shamdin, Julia Swindeman, and Zoe Cochran Accepted on this date by the OTD Program Director: Alison Nichols, OTR, OTD OTD Program Director Associate Professor of Occupational Therapy 12/13/23 Date EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 3 Abstract Moral distress is a prevalent issue among healthcare professionals. Little is known about how to mitigate moral distress within the field of occupational therapy, but ethics education may reduce its impact by providing practitioners with tools for managing ethical problems. The purpose of this study is to explore the impact of ethics education on managing ethical problems among occupational therapy practitioners within the first five years of practice. Specifically, the investigators looked at the type of ethics education that occupational therapy practitioners received and how helpful they found it. This study used a pre-existing survey dataset that was collected in the Spring of 2020. Questions included what ethical problems practitioners have encountered, ethics education they have received, how much they believed each kind of education helped them manage ethical problems, and how confident they felt responding to ethical issues in practice. Researchers analyzed data by using Spearmans rho and Kendalls Tau-b to evaluate the influence of the type of education on the level of helpfulness. Practitioners reported that the most helpful ethics education types were classroom discussions and case studies; fieldwork mentorship, informal discussions, and experience; continuing education; and informal discussions with colleagues. Practitioners relied on personal experience, common knowledge, past education, supervisors, mentors, and colleagues within their organizations to manage ethical problems. They were confident in their ability to manage ethical problems, access the AOTA Code of Ethics and State Practice Act, and find setting policies pertaining to ethics. They were not confident in finding written resources or filing an ethics complaint. This study will add to the current literature by evaluating the effect of ethical education and how helpful it is when occupational therapy practitioners are faced with ethical problems in the workplace. Keywords: Moral distress, ethics education, occupational therapy EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 4 Educational Interventions for Managing Ethical Problems in Occupational Therapy: A Survey Moral distress is prevalent in healthcare (Penny & You, 2011), including the profession of occupational therapy (OT; Penny et al., 2014). There is very little literature that discusses occupational therapy ethics education in the United States (US), and very little literature explores what type of education helps practitioners manage ethical problems (Dieruf, 2004). However, if practitioners are able to manage ethical problems, their moral distress may decrease (Bushby et al., 2015; Drolet, 2018). Morley, Bradbury-Jones, et al. (2021) defined moral distress as, The psychological distress that is causally related to a moral event (p. 2). When moral distress is not properly addressed, there is a decrease in job satisfaction that has the potential to lead to negative mental health outcomes in both patients and workers (Smallwood et al., 2021). The fact that moral distress negatively impacts patient care warrants careful consideration of interventions to reduce moral distress in occupational therapy practitioners. Much of the available literature on interventions for mitigating moral distress focuses on managing the emotions and trauma accompanying moral distress, not how to directly address the ethical issue at the root of the moral distress. These interventions include breathing techniques, yoga, self-reflection, and meditation (Patronis & Staffileno, 2021). Furthermore, there is no available literature that discusses education on how to prevent moral distress for occupational therapy assistants, a population that faces moral distress but does not have their experiences in relation to moral distress documented in the literature (Penny, 2019). Because moral distress is a prevalent issue among occupational therapy practitioners, there needs to be a better understanding of how entry-level occupational therapy and occupational therapy assistant programs might mitigate moral distress by intervening through education. EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 5 The purpose of this study was to explore the impact of ethics education on managing ethical problems in practice among occupational therapy practitioners within the first five years of practice. Specifically, investigators examined the formats and types of ethics education that occupational therapy practitioners received and how helpful they found these types of education to be for managing ethical problems in practice. In addition, this study explored the relationships between ethics education and confidence in skills for ethical problem-solving. Lastly, the researchers examined what additional support new occupational therapy practitioners have perceived to help resolve ethical problems in practice. This study adds to the very limited body of literature on occupational therapy practitioner education for ethical problem-solving in the US. Investigators used a pre-existing survey data set (Howard et al., 2023) with quantitative analysis to explore the impact of education on managing ethical problems (see Appendix A for survey questions). Literature Review A limited number of studies inside and outside of the US have investigated ethics education for occupational therapists. Kanney et al. (1996) investigated how occupational therapy coursework prepared students for ethical problems in fieldwork and practice in the US. This dissertation sought to understand whether having ethics education in coursework or practice experience made a difference in moral reasoning. The study sampled nine occupational therapy programs regarding entry-level ethics education and moral reasoning. A comparison between beginning students, senior students, and practicing practitioners who had graduated in the past two years showed no statistical significance regarding education and moral reasoning (Kanney et al., 1996). Dieruf (2004) looked at the change in the fields of occupational therapy and physical therapy and how the advancements in technology and managed care could lead to more ethical EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 6 problems. The investigators used the Defining Issues Test (DIT) to measure moral reasoning among physical therapy and occupational therapy students. The results showed that the current education the students were receiving was not enhancing their moral development (Drieuf, 2004). The authors emphasized that without proper ethics education, students would not be properly prepared for clinical practice. Educational programs that focused on how to handle ethical problems demonstrated the potential to decrease moral distress among practitioners. Penny and You (2011), in a cross-sectional study, collected data from students in a 5-year program and found that an entry-level occupational therapy education program may have helped prepare practitioners for moral reasoning. Similarly, Howard et al. (2020) found that fieldwork education may have contributed to improved moral reasoning patterns in entry-level occupational therapy and physical therapy students. These studies have shown that while there has been a need to decrease moral distress among practitioners, it has been difficult to determine how education may help. Within the US, there has not been a consensus on a specific educational ethics program that is beneficial for practitioners. Researchers have additionally investigated moral distress and the impact of ethics education in occupational therapy outside of the US. Kinsella et al. (2008) investigated ethical tensions among new graduates in occupational therapy in Canada. They discovered students were afraid to speak up about ethical tensions they experienced during fieldwork and out in practice and thought a lack of ethical education may have been the reason for their fear (Kinsella et al., 2008). Geddes et al. (2008) investigated in Canada whether moral reasoning schema and patterns were impacted by ethics training prior to graduation. The research team conducted a 6-year longitudinal study that followed six cohorts of occupational and physical therapy students. EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 7 After the study concluded, they found there was no significant impact of the educational ethics training on the graduates moral judgment (Geddes et al., 2008). VanderKaay et al. (2018) studied the impacts of online ethics education modules and found that clinician-educators who participated in the study reported a sustained increase in ethics knowledge and an intent to incorporate strategies to explicitly address ethics within the context of their work with student occupational therapists (p. 10). This study presented a specific educational program through a module that showed positive outcomes in increasing ethics knowledge. In a study done in Canada, researchers looked at 25 occupational therapy and physiotherapy programs and analyzed the content of their courses (Hudon et al., 2014). The study found that the terms ethics/ethical were found in 75% of OT and 71% of PT course descriptions (Hudon et al., 2014). While the programs do have courses that discuss ethics, it is not known what content is taught or how much time is spent on ethics-related content. While little research indicated how ethics education prepared occupational therapy students to face ethical problems in practice, studies in other healthcare professions have examined types of ethics education and their usefulness. Investigators from the nursing profession have examined the use of ethics education to mitigate the prevalent risk of facing moral distress (Krautscheid et al., 2017). Many nurses have not taken action against morally distressing issues due to a lack of external resources, fear, uncertainty, and more. The common solution that has been discussed is adding ethics education into the nursing curriculum. Bong (2019) proposed that adding ethical talking points to every unit in schooling would allow for an open and informal conversation regarding moral distress. Curriculum changes are critical for preparing nurses to enter the field and be prepared for ethical problems. By changing the curriculum, programs would create a comprehensive, sustainable approach for teaching the EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 8 future of the nursing workforce how to prevent and manage moral distress (Krautscheid et al., 2017, p.318). Therefore, by creating a universal curriculum on ethics, programs can better prepare their students for potential issues in the future. Multiple studies have evaluated the use of ethics education after experimenting with potential ethics curricula in collegiate healthcare programs. One education program saw a significant decrease in nursing students reported measures of moral distress after being introduced to two types of stressful situations in a 30-minute lecture and then evaluating a morally distressing scenario (Monteverde, 2016). On the other hand, Bilgen et al. (2018) found that students believed they had developed morals and ethical standards before attending university, from experiences they had growing up, but thought clinical practice experiences were better at enhancing those morals than lectures and assignments. In addition to curricular changes internal to a profession, interprofessional education scenarios were studied. In a systematic review, Guraya and Barr (2018) found that interprofessional education was vital to client-centered and high-quality care and contributed to ethical practice. Nichols et al. (2021) created an interprofessional education (IPE) day that brought nursing, midwifery, and law students together while Seidlein et al. (2021) allowed for collaboration between nursing and medical students. In both studies, there was a positive impact on the students' ethical understanding, and the experience allowed them to have an idea of how the other professional students would interpret the scenario (Nichols et al., 2021; Seidlein et al., 2021). Seidlein et al. (2021) found that the students believed the session should have been longer since the material was complicated. These two studies demonstrated the potential for ethics education in interprofessional scenarios and the benefit of interacting with students from other professions when interpreting these scenarios. EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 9 Healthcare practitioners have benefited from post-professional continuing education in the management of ethical issues to reduce moral distress. Allen and Butler (2016) discussed the impact of ethics education on critical care nurses who were experiencing moral distress. The intervention included using the American Association of Critical-Care Nurses (AACN) 4 As Model, communication, personal action plans, and ethical reasoning skills (Allen & Butler, 2016). Nurses were able to use the skills that they learned during their educational training to reduce their moral distress. The 4 As Model was also used with a group of critical care nurses in Iran in the form of an educational workshop. Researchers found that the model was successful in reducing moral distress among nurses (Molazem et al., 2013). While the ethics education that was given to the nurses did reduce their moral distress, it did not prevent the cause of the moral distress. The most common sources of moral distress were a continuation of life support, witnessing false hope, and continuing patient care despite little hope. While these situations cannot always be prevented, the education taught the nurses ethical reasoning skills that they could use in practice, ultimately relieving some of the moral distress that nurses face (Allen & Butler, 2016). While this intervention was successful for nurses, further research is needed to determine the effectiveness of educational interventions for reducing moral distress for other health professionals. Multiple interventions aimed at reducing moral distress among healthcare workers have been introduced. Investigators looked at nurses and doctors within an intensive care unit and implemented the following interventions: moral empowerment programs, end-of-life educational programs, reflective exercises through individual narrative writing or group reflective debriefing, multidisciplinary case debriefing, meetings integrated into clinical practice, and moral resiliency training (Imbulana et al., 2021). Researchers found that there was no significant evidence to EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 10 show that these interventions prevented or reduced moral distress. Morley, Field, et al. (2021) completed a systematic review to look at moral distress interventions among nurses. The following interventions were examined: facilitated discussions, self-reflection, narrative writing, multidisciplinary rounds, specialist consultation service programs, intervention bundles, and education interventions (Morley, Field, et al., 2021). Out of the sixteen articles included in the systematic review, seven reported a reduction in moral distress. The authors suggested that more effective interventions would need to be more flexible and adaptable to each individuals needs. Ethics rounds have been recommended as an intervention to reduce moral distress in occupational therapy practitioners (Erler, 2017). During these rounds, practitioners would be able to prepare for emerging ethical issues. Erler (2017) noted that during the ethics rounds, the environment should be professional, give a voice to underserved populations, and identify themes and triggers (Erler, 2017). By implementing these ethical rounds into practice, organizations would affirm that ethics were valued and addressed. Ethics rounds would allow for open communication, support, and preparation for ethical problems that could arise (Erler, 2017). By preparing for these ethical problems and having other people to talk to and learn from, the hope is that moral distress would be mitigated. A variety of educational programs have provided indirect interventions to address moral distress; that is, these interventions did not address the moral distress directly but rather the emotional sequelae experienced by a practitioner when encountering moral distress. Patronis and Staffileno (2021) used a Mindful Moment program that consisted of 20-minute sessions of yoga, self-reflection, and meditation among nurses. Irwin et al. (2020) offered resilience training to new graduate nurses. This training educated nurses on factors that lead to an increase in resilience and techniques that could be used in daily practice. These techniques included EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 11 interventions such as journaling, reflection, and gratitude. Sawyer et al. (2021) used the intervention of the RISE program. The RISE program was eight weeks long and was used as a psychoeducational group intervention for nurses. It focused on four different components including resilience, insight, self-compassion, and empowerment. Finally, Bevan and Emerson (2020) held their educational session based on Frierean conscientization. They held three, four-hour sessions of critical reflection, motivation, and action as an educational intervention for nurses, which resulted in participants feeling more confident and empowered when it came to speaking up regarding ethical issues (Bevan & Emerson 2020). The interventions in these studies were intended to mitigate moral distress when dealing with ethical problems and did not give strategies for working through ethical problems in practice. The literature has been limited regarding preventing and managing moral distress stemming from ethical problems among occupational therapy practitioners especially in the US. Moral distress has had the potential to lead to negative mental health outcomes in both patients and healthcare workers, which has been especially apparent during the COVID-19 pandemic (Smallwood et al., 2021). The increase in moral distress experienced by healthcare workers during COVID-19 has led to an increased risk of anxiety, depression, post-traumatic stress disorder, and burnout, (Smallwood et al., 2021, p. 1). Without proper interventions, there could be a threat to workforce longevity and the safety of patients. Education has the potential to lead to a higher level of confidence when facing ethical problems (VanderKaay et al., 2018). This study adds to the literature by addressing which formats and types of educational interventions occupational therapy practitioners reported that help address ethical problems and increase confidence in ethical problem-solving, thereby reducing moral distress. EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 12 Methods Study Approach The purpose of this study was to explore the impact of ethics education on managing ethical problems in practice among occupational therapy practitioners within the first five years of practice. This study utilized a dataset previously collected in the Spring of 2020 (Howard et al., 2023). In this quantitative cross-sectional, nonexperimental survey, 125 occupational therapists and occupational therapy assistants who had passed the NBCOT exam within the previous five years answered questions regarding ethical problems they had encountered, ethics education they have received, how much they believed each kind of education helped them manage ethical problems, how confident they felt responding to ethical issues in practice, and what they relied on for ethical problem-solving strategies. Researchers analyzed responses descriptively regarding educational formats and types and its helpfulness in managing ethical problems; and correlated confidence in ethical problem-solving to having received the types of education perceived to be the most helpful. Ethics This study was reviewed by the University of Indianapolis Human Research Protections Program Institutional Review Board and determined to be not human subjects research. No personal identifiers were collected in the survey. Participant Characteristics Target Demographics, Inclusion/Exclusion Criteria Participants included in the original dataset of this study were occupational therapy practitioners who passed the NBCOT within the past 5 years. Exclusion criteria included individuals who were not occupational therapists or occupational therapy assistants, and those EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 13 not practicing in the field of occupational therapy. Investigators excluded participants who completed less than 80% of the survey. Procedures Sampling Procedures In collaboration with NBCOT, investigators sent a mass email to a sample of people who recently passed the NBCOT exam within the past 5 years. NBCOT also advertised the survey on social media sites. Investigators stratified the sample to obtain responses from occupational therapy practitioners in all regions of the US. Investigators originally sent the survey to 3,600 occupational therapists and 1,200 occupational therapy assistants. Due to the low return rate, investigators sent the survey to an additional 2,000 occupational therapy practitioners and 1,000 occupational therapy assistants via email (Howard et al., 2023). Sample Size, Power, and Precision Investigators calculated the needed sample size to achieve statistical significance, using G*Power 3.1.9.4 (Faul et. al., 2009). With correlation set at 0.3, alpha error of probability of .05, and power set at 0.95, a sample size of 115 participants was needed to calculate Kendalls Tau-b and Spearmans rho. Overall, 163 individuals completed the demographic portion of the survey; 125 individuals remained after the removal of incomplete responses. Therefore, the study was adequately powered. Instrumentation This present study utilizes previously collected survey data (Howard et al., 2023). Investigators created a survey using principles from Forsyth and Kviz (2006) and Stein et al. (2013). Researchers asked several University of Indianapolis School of Occupational Therapy faculty members and an expert on survey research to review the questions in the survey using the EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 14 Cognitive Validity Method (Willis, 2004) to increase the validity of the survey. The researchers then edited the questionnaire to improve clarity and quality. For full survey questions, see Appendix A. Analysis For this current study, investigators analyzed the portions of the survey addressing ethics education in the classroom, on fieldwork, and with continuing education after post-entry level education using descriptive statistics (counts and percents) to determine most commonly reported formats and types of ethics education, which of these participants perceived as most helpful, confidence in ethical problem-solving, and what ethical problem-solving strategies they relied on when managing ethical problems in practice. Since the data were nonparametric for all variables (Shapiro-Wilk results 0.05), researchers used nonparametric tests of Kendalls Tau-b and Spearmans rho to correlate types of ethics education to confidence in ethical problem-solving. Results Of the 125 participants who completed the survey, 23.2% had passed the NBCOT exam less than one year prior, 44% had passed the NBCOT one to under three years prior, and 32.8% had passed the NBCOT three to five years prior to this survey. The mean age of the responding 123 participants was 30.8 and the median age was 28. The youngest participant was 23 and the oldest was 64. Ninety-two percent of the participants were female, 4.8% were male, one participant was a trans male, 2 identified as non-binary, and 1 preferred not to answer. Of the 125 participants, 108 were white, 4 were black or African American, 3 were biracial/multi-racial, 3 preferred not to answer, and 2 were other. When asked about ethnicity, 5.6% were Hispanic or Latino, 91.2% were not Hispanic or Latino, and 3.2% preferred not to answer. See Table 1 for demographic characteristics of the sample. EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS Table 1 Demographic Characteristics of Sample Variable (n Responding) Years since NBCOT (125) Less than 1 year 1 to under 3 years 3 to 5 years 29(23.2) 55(44) 41(32.8) Certification (125) Occupational Therapist Occupational Therapy Assistant 104(83.2) 21(16.8) OT Degree Obtained (104) Masters Doctoral 63(60.6) 41(39) OTA Degree Obtained (21) Associates 21(100) n(%) Region of entry-level degree obtained (125) West (Washington, Oregon, California, Montana, Idaho, Wyoming, Nevada, Utah, Colorado, Arizona, and New Mexico 21(16.8) Midwest (North Dakota, South Dakota, Nebraska, Kansas, Minnesota, Iowa, Missouri, Wisconsin, Michigan, Illinois, Indiana, and Ohio) 47(37.6) North East (New York, Pennsylvania, New Jersey, Vermont, New Hampshire, Massachusetts, Connecticut, Rhode Island, Maine) 25(20) South (Texas, Oklahoma, Arizona, Louisiana, Kentucky, Tennessee, Mississippi, Alabama, Georgia, Florida, South Carolina, North Carolina, Virginia, West Virginia, Maryland, Delaware) 31(24.8) Hawaii, Alaska, Puerto Rico, Washington D.C. and US Territories Outside the US Region of current practice (125) 1(0.8) 15 EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS West (Washington, Oregon, California, Montana, Idaho, Wyoming, Nevada, Utah, Colorado, Arizona, and New Mexico 33(26.4) Midwest (North Dakota, South Dakota, Nebraska, Kansas, Minnesota, Iowa, Missouri, Wisconsin, Michigan, Illinois, Indiana, and Ohio) 33(26.4) North East (New York, Pennsylvania, New Jersey, Vermont, New Hampshire, Massachusetts, Connecticut, Rhode Island, Maine) 15(12) South (Texas, Oklahoma, Arizona, Louisiana, Kentucky, Tennessee, Mississippi, Alabama, Georgia, Florida, South Carolina, North Carolina, Virginia, West Virginia, Maryland, Delaware) 40(32) Hawaii, Alaska, Puerto Rico, Washington D.C. and US Territories Outside the US 4(3.2) Area of primary practice (125) Children and Youth Mental Health Rehabilitation & Disability Productive Aging Emerging & non-traditional Academic Administrative/managerial Not working in OT Other 41(32.8) 5(4) 55(44) 13(10.4) 2(1.6) 1(0.8) 1(0.8) 3(2.4) 4(3.2) Years in Current Practice Setting (125) Less than a year 1 to under 3 years 3 to 5 years Other 46(36.8) 51(40.8) 26(20.8) 2(1.6) Age (123) Mean Median Youngest Oldest 30.8 28 23 64 16 EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS Gender (125) Male Female Trans male Non-binary Prefer not to answer 17 6(4.8) 115(92) 1(0.8) 2(1.6) 1(0.8) Primary Race (125) White Black or African American Asian/Pacific Islander Biracial/Multi-racial Prefer not to answer Other 108(86.4) 4(3.2) 5(4) 3(2.4) 3(2.4) 2(1.6) Ethnicity (125) Hispanic or Latino Not Hispanic or Latino Prefer not to answer 7(5.6) 114(91.2) 4(3.2) Didactic Ethics Education Formats and Types Table 2 contains the ethics education formats and types that entry-level occupational therapists and occupational therapy assistants reported they received in didactic, fieldwork, and post-certification education. Participants reported that dedicated face-to-face ethics courses were the most helpful. Ethics content interwoven throughout the curriculum was the most common type of education content received by participants. Entry-level occupational therapy practitioners reported receiving various ethics education types, with the majority (94.3%) receiving lecture-based education. Ethical case studies were reported as the most helpful type of education, with a mean of 2.56 out of a total possible of 3 on a Likert-type scale. See Table 2. EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 18 The most common types of ethics education participants received on Level II Fieldwork included first-hand experiences with ethical dilemmas and discussions with fieldwork educators regarding those experiences. Participants reported that the most helpful types of education on fieldwork were an informal discussion with fieldwork educators or occupational therapy interprofessional colleagues (62%). Another helpful education type was experiences with clients during fieldwork involving ethical problems, with a mean of 2.48 out of a possible 3 on a Likert-type scale. See Table 2 for reporting of responses with a mean of two or more out of three on the Likert-type scale for helpfulness. Table 2 Ethics Education Formats and Types in Didactic, Fieldwork, and Continuing Education Ethics Education Descriptions Entry-Level Ethics Education Format Entry-Level Ethics Education Types Item* (n responding) n (%) **Helpfulness mean(median) 114(95.2) n=109 2.46(3.0) Dedicated face-to-face ethics course (n=121) 96(79.3) n= 94 2.53(3.0) Ethics lecture (n=123) 116 (94.3) n=111 2.38 (2.0) Formal classroom discussion with cohort classmates about ethics (n=123) 115 (93.5) n=110 2.51(3.0) Reading assignment (n=122) 109 (89.3) n=105 2.33 (2.0) Ethics case studies (n=123) 105 (85.4) n=100 2.56(3.0) Ethics content interwoven throughout the curriculum (n=120) EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS Informal discussion (n=121) 103 (85.1) n=99 2.42(2.0) Ethical problem-solving guide, steps, or resources (n=123) 100 (81.3) n=97 2.50(3.0) 80 (65) n=80 2.39(2.0) Ethics role playing (n=122) 80 (65.6) n=81 2.43(3.0) Interprofessional education experience in the classroom regarding ethics(n=121) 62 (51.2) n=58 2.48(2.5) Informal discussion with OT colleagues in fieldwork setting regarding ethics (121) 75(62) n=72, 2.54(3) Experience with clients in fieldwork settings involving ethical issues or problems (121) 73(60.3) n=68, 2.48(3) Read an occupational therapy professional article on ethics (n=121) 70 (57.9) n= 66 2.20 (2.0) Ethics exam (n=123) Fieldworks Ethics Education Types Ethics Education Since Initial OT Certification 19 *In your entry-level (classroom) education, which of the following types of ethics education did you receive? ** If you did receive this type of education, how well did it help you learn to resolve ethical problems you have encountered in practice? 1 = did not help; 2 = helped somewhat; 3 = helped a great deal. Ethics Education Since Initial Occupational Therapy Certification Seventy participants reported reading an article on ethics since their initial occupational therapy certification, which was somewhat helpful (x = 2.2 out of 3). EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 20 Ethical Problem-Solving Strategies Table 3 contains what the participants rated they relied on the most to decide on a course of action. These participants reported that the following were relied on the most: common knowledge, personal experiences, talking to a supervisor, past education to identify, assess, and offer resolutions, and talking to a colleague. See Table 3 for more information. Table 3 Ethical Solving Strategies Item* (n responding) Relied on common knowledge (120) Relied on Mean(median)** 4.20(4.0) Relied on personal experience (120) 4.04(4.0) Relied on past education to identify, assess, offer resolution (119) 4.03(4.0) Talked with a supervisor (119) 4.03(4.0) Talked with a colleague within the organization/setting (120) 3.6(4.0) Looked up laws (licensure act, third party payor rules, etc.) (120) 3.06(3.0) Looked up policies and procedures (120) 3.05(3.0) Talked with a mentor within the organization/setting (120) 3.03(3.0) Looked up a Code of Ethics (120) 2.85(3.0) Looked up other resource materials (120) 2.85(3.0) Talked with a colleague outside the organization/setting (120) 2.8(3.0) Talked with a mentor outside the organization/setting (120) 2.56(2.0) Enrolled in continuing education (120) 1.93(1.0) EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS Talked with an ethics committee member or members (119) 1.59(1.0) Other (please write in) (34) 1.29(1.0) 21 * Which items OTP relied on to decide on a course of action when experiencing ethical problems. ** When encountering an ethical problem in practice, how much did you rely on each of the following to decide on a course of action to resolve the ethical problem? (1 = none at all; 2 = a little; 3 = a moderate amount; 4 = a lot; 5 = a great deal) Relationship between Ethics Education and Confidence in Skills Investigators explored the relationships between ethics education and confidence in skills for ethical problem-solving by correlating the Confidence scale (10 items) to specific types of ethics education. Investigators first analyzed confidence items using Cronbachs alpha to determine if these items could be totaled into a scale and analyzed together. Cronbachs = .842 for the 10 items, indicating good internal consistency. Investigators then analyzed the correlation between the confidence scale and ethics education items to determine if there was a relationship between ethics problem-solving confidence and specific types of ethics education. Investigators used both Kendall's Tau b and Spearmans rho statistics due to the small sample size and nonparametric nature of the data, and to compare the results between these two nonparametric tests. Investigators included only items with 10 or more in each group, per the requirements of the statistical test (Field Study Council, n.d.). Tables 4, 5, and 6 contain the significant results from these correlations. Results indicated a significant but low-strength correlation between ethical problem-solving confidence and ethics education items listed. Table 4 Didactic Education: Significant Correlations between Question Items and Ethical Problem-Solving Confidence Total Scale Variable* (n responding) Kendalls Tau B Spearmans Rho EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 22 Significance (p<.05) Correlation Coefficient** Significance (p<.05) Correlation Coefficient Ethics content interwoven throughout the curriculum (116) .048 0.155 .047 0.185 Informal discussion with cohort classmates about ethics (112) 0.003 0.236 0.003 0.283 Ethics exam (110) 0.041 0.164 0.040 0.196 Ethics case studies (119) 0.008 0.204 0.007 0.244 Ethics role playing (110) 0.000 0.289 0.000 0.346 Interprofessional education experience in the classroom regarding ethics (106) 0.003 0.245 0.002 0.293 Professional conference session related to ethics while in OT school (107) 0.012 0.193 0.017 0.231 EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS Professional development discussion with mentor or advisor related to ethics (110) 0.003 0.222 0.005 23 0.265 *Question: In your entry-level (classroom) education, which of the following types of ethics education did you receive? **Correlation coefficients are interpreted as: 0 - 0.20 = negligible; 0.20 - 0.40 = low; 0.40 0.60 = moderate; 0.60 - 0.80 = high; 0.80 - 1.00 = very strong correlation. Table 5 Fieldwork Education: Significant Correlations between Question Items and Ethical Problem-Solving Confidence Total Scale Variable* (n responding) Significance (<.05) Kendalls Tau B Significance Ethical problem-solving guide, steps, or resource (114) 0.006 Correlation Coefficient** 0.205 Significance (<.05) Spearmans Rho Significance Correlation Coefficient 0.009 0.245 *Question: In your entry-level (classroom) education, which of the following types of ethics education did you receive? **Correlation coefficients are interpreted as: 0 -0.20 = negligible; 0.20 - 0.40 = low; 0.40 0.60 = moderate; 0.60 - 0.80 = high; 0.80 - 1.00 = very strong correlation. Table 6 Ethics Education Since Entering Practice: Significant Correlations between Question Items and Ethical Problem-Solving Confidence Total Scale EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS Variable* (n responding) 24 Significance Kendalls Tau B Significance Spearmans Rho Significance (p<.05) Significance (p<.05) Correlation Coefficient Correlation Coefficient** Ethics continuing education taken as required by the state licensing board (117) 0.002 0.228 0.003 0.272 Ethics continuing education taken for workplace/setting (119) 0.015 0.182 0.017 0.218 Ethics continuing education taken for a specialty certification (113) 0.001 0.262 0.001 0.314 Ethics continuing education sought on own (119) 0.008 0.190 0.013 0.227 Reading an interprofessional article on ethics (115) 0.013 0.188 0.016 0.224 *Question: In your entry-level (classroom) education, which of the following types of ethics education did you receive? **Correlation coefficients are interpreted as: 0 -0.20 = negligible; 0.20 - 0.40 = low; 0.40 0.60 = moderate; 0.60 - 0.80 = high; 0.80 - 1.00 = very strong correlation. Items not included for correlation analysis were: ethics content interwoven throughout the curriculum, ethics readings, ethical problem-solving guide, formal classroom discussion, ethics training separate from orientation, postgraduate ethics course, organizational ethics committee or consultation, and formal mentorship. These items did not meet the statistical assumptions for EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 25 correlation analysis (i.e., did not have 10 or more participants in each group). Discussion Education In didactic education, role-playing was considered to be most helpful, followed by IPE classroom experiences and mentorship discussions. The lowest ranked type was ethics exams. The results reflect that hands-on education for ethical problem-solving was perceived as more helpful. These results are similar to those found in studies that included role-playing and scenario-based education (Bilgen et al. 2018; Monteverde, 2016). This finding may be because studying for examinations is more memorization-based, while educational experiences give students more active participation in acquiring and solidifying knowledge. It is important to note that this discrepancy could also be due to the differences in preferred student learning styles. The results of this study suggest it may be helpful to prioritize ethics education in didactic and post-graduate education rather than in fieldwork. Placing a greater focus on role-playing, IPE discussions, and mentorship discussions during class time could be beneficial in increasing the percentage of occupational therapists perceived ability to address ethical problems. These results align with findings that IPE events within didactic education allow for a broader understanding of other professional students ethical reasoning (Nichols et al., 2021; Seidlein et al., 2021). The reason behind the effectiveness of these interventions over others could be explained by the higher use of active learning and problem-solving as well as the opportunity to gain others perspectives and ideas through discussions. Fieldwork The results revealed that certain experiences during fieldwork helped improve preparedness for ethical problems. The fieldwork experiences that practitioners perceived as EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 26 helping the most included informal discussions with fieldwork educators and interprofessional colleagues, gaining experience with managing ethical issues, having a mentorship with a fieldwork educator or other individual, and having an ethical problem-solving guide, theory, steps, or method to follow. These findings align with the positive response from ethics rounds during the work week that allow practitioners to discuss ethical problems (Erler, 2017). However, only problem-solving guides were found to be statistically significant when correlated with ethical problem solving confidence.. This may be because students can take the time to look at these resources on their own, away from stressors. It may be difficult for students to find ethical education on fieldwork helpful because they are focused on learning skills and engaging in their setting. Ethics Education Since Certification Regarding education for new practitioners, many resorted to finding ethics education on their own. This could be because they had more time or witnessed more ethical problems and needed to seek education independently. Less than half of the respondents reported having to complete continuing ethics education required by their state or practice setting. If more states or practice settings have this requirement, it may help promote continuing education regarding ethics. Another form of ethics education since certification that respondents found helpful was informal mentorships. Informal mentorships allow individuals to talk about ethical dilemmas with people in the same field. People may have found this helpful because mentors often give advice based on similar life situations, offering insight towards the practitioners experiences. Practitioners noted that reading ethics articles was a popular form of continuing education regarding ethics, however they are often inaccessible to practitioners.. EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 27 Practitioners would be better informed on ethics if there were an easier way to access these articles to use for their continuing education units (CEUs). With the incentive of CEUs, more practitioners may access ethics articles and be informed about up-to-date ethics research in the field of occupational therapy. More articles, combined with more intuitive ways to access them, could increase the likelihood that practitioners would read articles about ethics after their initial education. This educational strategy may help mitigate or reduce moral distress in practitioners by educating them on what to do if these situations occur.. It is important to note that some ethical situations are hard to prepare practitioners for such as specific dilemmas related to a global pandemic. This is why it is important for practitioners to have a base knowledge in mitigating moral distress, not just specific scenarios. In this instance, case studies may not be as beneficial to understanding how to mitigate moral distress in cases one cannot always predict. This explains why it is important to focus on other areas of didactic education and fieldwork education to further prepare practitioners. Recommendations for Research The current study helped reveal certain gaps in ethics education and can be used to suggest recommendations for future research on the topic. First, research could explore the effectiveness of an ethics mentorship program during fieldwork for mitigating moral distress. It would be beneficial to further examine if preparedness for ethical problem-solving through didactic education helps to mitigate moral distress. A longitudinal cohort study exploring didactic education with ethical problem-solving and their confidence levels would be helpful for educators to understand the effectiveness over time. Implications for Occupational Therapy Practice With the most significant intervention from this study being ethical continuing education, EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 28 followed by state-required continuing education and continuing education sought out on your own, this study reflects the need for occupational therapy practitioners to consider taking more CEUs regarding ethics education. As newly practicing occupational therapists gain experience, ethical problems will certainly occur. Registering for CEUs focused on ethical problem-solving could help practitioners reflect on their experiences with ethical problems and consider what they could have done differently. This also would help practitioners prevent ethical problems and manage them appropriately and more effectively. Limitations Limitations included a small sample size that could have impacted the results and self-selection bias due to practitioners choosing whether they wanted to participate in the study. This survey took place during the second month of the COVID-19 pandemic, which could have impacted results. Because of the uncertainty created by the pandemic, practitioners may have experienced more recent ethical problems that prompted them to respond to the questionnaire. Conclusion Occupational therapy practitioners consistently experience ethical problems within the first five years of practice. This study aimed to explore the impact of ethics education on managing ethical problems among occupational therapy practitioners within the first five years of practice. Researchers met this aim through a survey and analyzed the different types of education experienced and how that education correlated with confidence in managing ethical problems. Correlations between education formats and types, such as hands-on education, IPE discussions, and mentorships, and practitioners confidence when managing ethical problems reflected the most benefit. Researchers recommend using these techniques as instructional activities in preparation for managing ethical problems. Implications for practice include more EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 29 support for ethical problem management during fieldwork, ethics mentorships, continuing education, and ethics rounds in practice. Further research is recommended to explore the effectiveness of ethics education on confidence levels with ethical problem-solving. EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 30 References Allen, R. & Butler, E. (2016). Addressing moral distress in critical care nurses: A pilot study. International Journal of Critical Care and Emergency Medicine, 2(2), 1-6. https://doi.org/10.23937/2474-3674/1510015 Bevan, N. A., & Emerson, A. M. 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American Journal Occupational Therapy, 73(4), 1. https://doi.org/10.5014/ajot.2019.73S1-PO8037 Penny, N. H., Ewing, T. L., Hamid, R. C., Shutt, K. A., & Walter, A. S. (2014). An investigation of moral distress experienced by Occupational Therapists. Occupational Therapy in Health Care, 28(4), 382-393. https://doi.org/10.3109/07380577.2014.933380 Penny, N. H. & You, D. (2011). Preparing occupational therapy students to make moral decisions. Occupational Therapy In Health Care, 25(2-3), 150-163, https://doi.org/10.3109/07380577.2011.565544 Sawyer, A. T., Bailey, A. K., Green, J. F., Sun, J., & Robinson, P. S. (2021). Resilience, insight, self-compassion, and empowerment (RISE): A randomized controlled trial of a EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 34 psychoeducational group program for nurses. Journal of the American Psychiatric Nurses Association, 00(0), 1-14, https://doi.org/10.1177/10783903211033338 Seidlein, A., Hannich, A., Nowak, A., & Salloch, S. (2021). Interprofessional health-care ethics education for medical and nursing students in Germany: An interprofessional education and practice guide. Journal of Interprofessional Care, 36(1), 144-151. https://doi.org/10.1080/13561820.2021.1879748 Smallwood, N., Pascoe, A., Karimi, L., & Willis, K. (2021). Moral distress and perceived community views are associated with mental health symptoms in frontline health workers during the COVID-19 pandemic. International Journal of Environmental Research and Public Health, 18(16), 3-15. https://doi.org/10.3390/ijerph18168723 Stein, F., Cutler, S., & Rice, M. (2013). Clinical research in Occupational Therapy (5th ed.). Clifton Park, NY: Delmar. VanderKaay, S., Letts, L., Jung, B., & Moll, S. E. (2018). On-line ethics education for occupational therapy clinician-educators: A single-group pre-/post-test study. Disability and Rehabilitation, 41(23), 28412853. https://doi.org/10.1080/09638288.2018.1473510 Willis, G. B. (2004). Cognitive interviewing: A tool for improving questionnaire design. SAGE Publications. EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 35 Appendix A Survey Questions Demographics Questions Answers How many years ago did you complete your initial NBCOT certification for your current occupational therapy practice title? Less than 1 year 1 to under 3 years 3 to 5 years 6 or more years I do not have an initial NBCOT certification What is your current or most recent occupational therapy practice NBCOT certification? Occupational Therapy Assistant Occupational Therapist I am not, and have never been, and NBCOT-certified occupational therapy practitioner What degree did you obtain to become an occupational therapy assistant? Associates Bachelors What degree did you obtain to become an occupational therapist? Masters Doctoral In what region did you obtain your entry-level degree for your current practice level? West (Washington, Oregon, California, Montana, Idaho, Wyoming, Nevada, Utah, Colorado, Arizona, and New Mexico) Midwest (North Dakota, South Dakota, Nebraska, Kansas, Minnesota, Iowa, Missouri, Wisconsin, Michigan, Illinois, Indiana, and Ohio) Northeast (New York, Pennsylvania, New Jersey, Vermont, New Hampshire, Massachusetts, Connecticut, Rhode Island, Maine) South (Texas, Oklahoma, Arizona, Louisiana, Kentucky, Tennessee, Mississippi, Alabama, Georgia, Florida, South Carolina, North Carolina, Virginia, West Virginia, Maryland, Delaware) Hawaii, Alaska, Puerto Rico, Washington D.C and US Territories Outside the US In what region do you currently practice? West (Washington, Oregon, California, EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 36 Montana, Idaho, Wyoming, Nevada, Utah, Colorado, Arizona, and New Mexico) Midwest (North Dakota, South Dakota, Nebraska, Kansas, Minnesota, Iowa, Missouri, Wisconsin, Michigan, Illinois, Indiana, and Ohio) Northeast (New York, Pennsylvania, New Jersey, Vermont, New Hampshire, Massachusetts, Connecticut, Rhode Island, Maine) South (Texas, Oklahoma, Arizona, Louisiana, Kentucky, Tennessee, Mississippi, Alabama, Georgia, Florida, South Carolina, North Carolina, Virginia, West Virginia, Maryland, Delaware) Hawaii, Alaska, Puerto Rico, Washington D.C and US Territories Outside the US In which of these settings do you currently primarily practice? Please choose one. Children & Youth Health & Wellness Mental Health Rehabilitation & Disability Productive Aging Work & Industry Emerging & non-traditional Academic Administrative/managerial Not working in OT Other How long have you been practicing in your current primary practice setting (at your current practitioner level)? Less than a year 1 to under 3 years 3 to 5 years Other What was your previous primary practice setting, prior to your current employment? Children & Youth Health & Wellness Mental Health Rehabilitation & Disability Productive Aging Work & Industry Emerging & Non-Traditional Academic Administrative/ managerial Not working in OT EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 37 No previous practice setting/ have been in my current practice setting since entry into the profession Other In what region was your previous practice setting (prior to your current employment)? West (Washington, Oregon, California, Montana, Idaho, Wyoming, Nevada, Utah, Colorado, Arizona, and New Mexico) Midwest (North Dakota, South Dakota, Nebraska, Kansas, Minnesota, Iowa, Missouri, Wisconsin, Michigan, Illinois, Indiana, and Ohio) Northeast (New York, Pennsylvania, New Jersey, Vermont, New Hampshire, Massachusetts, Connecticut, Rhode Island, Maine) South (Texas, Oklahoma, Arizona, Louisiana, Kentucky, Tennessee, Mississippi, Alabama, Georgia, Florida, South Carolina, North Carolina, Virginia, West Virginia, Maryland, Delaware) Hawaii, Alaska, Puerto Rico, Washington D.C, Military, and US Territories Outside the US No previous practice setting/ have been in my current setting since entry to the profession How long did you practice in your previous practice setting (prior to your current employment)? Less than 1 year 1 to under 3 years 3 to 5 years N/A No previous practice setting Other What is your age? What is your gender? Male Female Trans male Trans female Non-binary Prefer not to answer Other (please write in) What do you consider to be your primary race? White/ Caucasian Black or African American Asian/ Pacific Islander American Indian/ Alaskan Native EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 38 Biracial/Multi-racial (please write in) Prefer not to answer Other What is your ethnicity? Hispanic or Latino Not Hispanic or Latino Prefer not to answer Ethics Preparation Questions Format Options In your entry-level (classroom) education, which of the following formats or ethics education did you receive? If you did receive this format of education, how well did it help you learn to resolve ethical problems you have encountered in practice? Dedicated face-to-face ethics course In your entry-level (classroom) education, which of the following types of ethics education did you receive? If you did receive this type of education, how well did it help you learn to resolve ethical problems you have encountered in practice? Ethics Lecture Dedicated online ethics course Ethics content interwoven throughout the curriculum Other (please describe) Reading assignment(s) about ethics Ethical problem-solving guide, steps, or resource Formal classroom discussion with cohort classmates about ethics Informal discussion with cohort classmates about ethics Sub Questions Answer Options Did you receive this format of ethics education in your entry-level (classroom) education? Yes No Not sure If yes: How well did this type of education help you learn to resolve ethical problems you have encountered in practice? Did not help Helped somewhat Helped a great deal Did you receive this format of ethics education in your entry-level (classroom) education? Yes No Not sure If yes: How well did this type of education help you learn to resolve ethical problems you have encountered in practice? Did not help Helped somewhat Helped a great deal EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 39 Ethics exam Ethics case studies Ethics role playing Interprofessional education experience in the classroom regarding ethics Interprofessional education experience outside of the classroom regarding ethics Professional conference session related to ethics while in OT school Participation in a student organization session while in school related to ethics Professional development discussion with mentor or advisor related to ethics Other (please write in) In your Level II Fieldwork clinical practice education, which of the following types of ethics education did you receive? If you did receive this type of education, how Ethics reading assignment while at fieldwork site Yes No Not sure Ethics training in fieldwork orientation Did you receive this type of ethics education in your clinical practice education/Level II Fieldwork? Ethics training session in fieldwork If yes: How well did this type of education Did not help Helped somewhat EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS well did it help you learn to resolve ethical problems you have encountered in practice? that was separate from orientation Attendance at an ethics committee meeting or participation in an informal or formal ethics case consultation Mentorship with fieldwork educator regarding ethics Mentorship with another individual within the fieldwork setting regarding ethics Informal discussion with OT colleagues in fieldwork setting regarding ethics Informal discussion with interprofessional colleagues in fieldwork setting regarding ethics Experience with clients in fieldwork setting involving ethical issues or problems Ethical problem solving guide, steps, or resource Formal ethics rounding in the fieldwork setting help you learn to resolve ethical problems you have encountered in practice? 40 Helped a great deal EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 41 Other (please write in) Since becoming initially certified as an OT practitioner, which of the following types of ethics education did you receive? If you did receive this type of education, how well did it help you learn to resolve ethical problems you have encountered in practice? Read an occupational therapy professional article on ethics Read an interprofessional or non-professional article on ethics Completed ethics continuing education required by state/territory license Completed ethics continuing education required by my practice setting Completed ethics continuing education required by a professional association or specialty certification Completed ethics continuing education that I sought on my own Completed a post-graduate level course on ethics at a college or university Participation in an organization's ethics committee or ethics consultation service Sought formal ethics mentorship Did you receive this type of ethics education since becoming initially certified? Yes No Not sure If yes: How well did this type of education help you learn to resolve ethical problems you have encountered in practice? Did not help Helped somewhat Helped a great deal EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS 42 Sought informal ethics mentorship Other (please write in) Understanding and Confidence with Ethical Problem Solving Prompt Please rank the following statements on a scale from "I am not confident" to "I am highly confident." Statement I can adequately manage ethical problems in my current practice setting. I understand how to use an ethical problem solving theory, guide, steps, or other method to help work through ethical problems in practice. I know where to find and access the AOTA Code of Ethics. I know where to find my state or territory's occupational therapy practice act. I know where to find my practice setting's policies and/or procedures, and/or other resources, related to ethical problem management or resolution. I know how to bring an ethics issue before an ethics committee at my facility, in my state, and/or with my national association I know where to get written resources on solving ethical problems. I know where to find Scale Options I am not confident that I am able to do this. I am unsure that I am able do this. I am neutral regarding whether I am able to do this. I am confident that I am able to do this. I am highly confident that I am able to do this. EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS individuals within my work setting with whom I can discuss ethical problems. I know where to find individuals outside of my work setting with whom I can discuss ethical problems. I know where to find continuing education regarding ethics. Other (please write in) When encountering an ethical problem in practice, how much did you rely on each of the following to decide on a course of action to resolve the ethical problem? Relied on personal experience A great deal A lot Relied on common A moderate amount knowledge A little None at all Relied on past education to identify, assess, offer resolutions Talked with a supervisor Talked with an ethics committee member or members Talked with a mentor within the organization/setting Talked with a colleague within the organization/setting Talked with a mentor outside the organization/setting Talked with a colleague outside the organization/setting Looked up policies and procedures 43 EDUCATIONAL INTERVENTIONS FOR MANAGING ETHICAL PROBLEMS Looked up laws (licensure act, third party payor rules, etc.) Looked up a Code of Ethics Looked up other resource materials Enrolled in continuing education Other (please write in) Is there anything else you would like to tell us about the ethical problems you have experienced since becoming initially certified? (For example - tell us your story! What was the ethical problem? What did you do? Did you experience moral distress? Did you find resolution? Are you holding on to that moral distress or do you have lingering self-doubt about whether you did the "right" thing? How have ethical problems and challenges impacted your practice?) 44  ...

... 1 A Well Kept Secret, Identifying Facilitators and Barriers to Occupational Therapy Referral by United States Cancer Healthcare Professionals Olivia Witteborg, Korrin Schalhamer, Morgan Jones, Alexandria Gilley, Cara Murphy, Taylor Brown, Rachel Graves December 2023 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 2 A Research Project Entitled Title: A Well Kept Secret, Identifying Facilitators and Barriers to Occupational Therapy Referral by United States Cancer Healthcare Professionals 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. Morgan Jones, Korrin Schalhamer, Olivia Witteborg, Alexandria Gilley, Cara Murphy, Taylor Brown, Rachel Graves OTS Katie Polo DHS, OTR, CLT-LANA Accepted on this date by the OTD Program Director: Alison Nichols, OTR, OTD OTD Program Director Associate Professor of Occupational Therapy Date 12/13/23 3 TABLE OF CONTENTS TABLE OF CONTENTS.................................................................................................................. 3 SCOPING REVIEW......................................................................................................................... 5 Scoping Review...........................................................................................................................5 Methods....................................................................................................................................... 7 Data Extraction and Synthesis...............................................................................................8 Inclusion/Exclusion Criteria..................................................................................................9 Procedures to Address Trustworthiness and Credibility....................................................... 9 Results....................................................................................................................................... 10 Theme 1: Oncologist's Perspectives on Rehabilitation....................................................... 11 Theme 2: Personal Characteristics of Patients.................................................................... 12 Theme 3: Characteristics of Cancer.................................................................................... 12 Theme 4: Multidisciplinary Coordination and Communication......................................... 13 Discussion................................................................................................................................. 14 Limitations...........................................................................................................................15 Implications......................................................................................................................... 16 Conclusions............................................................................................................................... 16 PHASE II RESEARCH STUDY.................................................................................................... 18 Research Abstract......................................................................................................................18 Introduction............................................................................................................................... 19 Methods..................................................................................................................................... 20 4 Research Team.....................................................................................................................20 Research Design.................................................................................................................. 20 Participants.......................................................................................................................... 21 Data Analysis...................................................................................................................... 22 Credibility and Trustworthiness.......................................................................................... 22 Results....................................................................................................................................... 23 Participants.......................................................................................................................... 23 Findings............................................................................................................................... 23 Barriers to Referral.............................................................................................................. 23 Participant Context.............................................................................................................. 26 Knowledge of Patient Client Factors & Side Effects.......................................................... 31 Visual Diagram....................................................................................................................32 Discussion................................................................................................................................. 32 Limitations...........................................................................................................................34 Practice Implications........................................................................................................... 35 Conclusion.................................................................................................................................36 REFERENCES................................................................................................................................37 APPENDIX A................................................................................................................................. 43 APPENDIX B..................................................................................................................................46 APPENDIX C..................................................................................................................................48 5 SCOPING REVIEW Scoping Review The number of people living with or beyond cancer (LWBC) is rising, from 15.5 million in this decade, to 20 million in the next (Alfano et al., 2017). Cancer survivorship is defined as the span of time between diagnosis until the end of life (Loh & Jonsson, 2016). With a survival rate of 67% overall, there is a large percentage of people who live with the side effects of cancer and medical treatments throughout their entire lifetime (Siegel et al., 2020). A diagnosis, as well as treatment for cancer, can lead to a range of short-term, long-term, and late-onset symptoms (Alfano et al., 2017). Cancer impacts physical, cognitive, and emotional aspects of life as well as other important body processes and functions through the harsh treatments necessary to rid the body of the cancer cells (Baxter et al., 2017). Treatments can cause one or more side effects including pain, fatigue, impairment in emotional functioning, anxiety, depression, insomnia, and body image (Loh & Jonsson, 2016). More consequences of cancer treatment can be balance and mobility problems, bladder and bowel issues, communication difficulties, cognitive problems, etc. (Alfano et al., 2017). These limitations, or side effects, can interfere with the patient's ability to be functional at work and participate in lifelong activities (Alfano et al., 2017). Although cancer treatments are used to save lives, survivors are left with physical and psychosocial complications that can prevent engaging in everyday life activities and can result in a compromised quality of life (Baxter et al., 2017). These effects can make it hard for individuals LWBC to continue with their typical daily activities such as going back to work, self-care, leisure, social activities, etc. (Alfano et al., 2017). 6 Cancer is recognized as a chronic condition that has a draining impact on areas in a patient's life (Loh & Jonsson, 2016), which requires care beyond a medical standpoint. However, there is a lack of survivorship care including rehabilitation that can prolong the physical, cognitive, and emotional side effects of cancer (Baxter et al., 2017). Therefore, a broader psychosocial-emotional and occupational functioning model of care is needed, throughout the cancer continuum, that addresses occupational participation for reengaging with work, daily activities, and leisure (Loh & Jonsson, 2016). With the side effects of cancer negatively impacting an individual's quality of life, the use of rehabilitation including occupational therapy (OT), physical therapy (PT), and speech therapy (SLP) can help to reduce these impacts and improve the function of the individual (Stout et al., 2021). Cancer rehabilitation is defined as restoring the level of independence and functional ability that one had before cancer (Pergolotti, 2014). The ability to resume the performance of daily activities, work, and engagement in meaningful activities after cancer continues to be overlooked in rehabilitation (Loh & Jonsson, 2016). The need for cancer survivorship rehabilitation is evident; however, many rehabilitation professions including OT are underutilized (Pergolotti, 2014). Physician unawareness and poor communication between fields lead to a lack of referrals needed to access care (Pergolotti, 2014). Evidence supports the use of rehabilitation to treat physical, cognitive, and performance impairments to manage oncology treatment-related symptoms (Stout, 2021). With the absence of screening and monitoring cancer patients for rehabilitation services, many of these symptoms and problems go unaddressed. Routine screening and referrals to rehabilitation services should be implemented across all oncology settings (Alfano et al., 2017). For individuals LWBC, OT addresses health, well-being, and participation to enhance length and quality of life (Loh & Jonnsson, 2016; American Occupational Therapy Association 7 [AOTA], 2020). Utilizing this holistic approach, the person is focused on as a whole, rather than the isolated aspect, which addresses all aspects of cancer effects (AOTA, 2020). With the known benefits that OT can provide, there is a need to understand why services are underutilized in those LWBC, including exploring barriers to OT referral. Currently, researchers are conducting a systematic review exploring reported barriers to cancer rehabilitation from health care professionals' point of view; however, results are not yet determined (Cadmus-Bertram & Douglass, 2021). Understanding barriers provides background information on the referral process, though they do not improve utilization. Exploring supports provides implementable solutions to the overall problem of the lack of referrals to rehabilitation services for people LWBC (Boyden et al., 2010). The purpose of this systematized literature review is to explore the factors surrounding referral to OTfrom healthcare providers in cancer care that include barriers as well as support to referral. The specific question used to guide this literature review is, "In cancer healthcare professionals, which factors influence the referral of individuals LWBC to rehabilitation services throughout their survivorship continuum?" The objective is to address why individuals LWBC are not receiving referrals to rehabilitation as well as what strategies can be implemented to receive referrals in the future. Methods The Model of Occupational-Participation for Cancer Survivorship (MOPCS), is an emerging model of survivorship care, augmented by the International Classification of Functioning (ICF) by the World Health Organization, that addresses the gap in the provision of services that focuses on the resumption of life occupations and engagement in meaningful activities throughout the survivorship continuum (Loh & Johnson, 2016). The MOPCS 8 incorporates a number of critical areas for persons LWBC, such as distinguishing between health issues prior to cancer, health conditions throughout the disease, and health conditions after cancer has been eradicated (Loh and Johnson, 2016). The use of the MOPCS assisted in organizing thinking with regard to article inclusion for the supports and barriers of cancer rehabilitation referrals throughout the survivorship continuum. Data Extraction and Synthesis To begin the search process, a systematized approach was used that followed a sequential procedure with the elements of a systematic review including comprehensive searching, leveling of articles, quality assessment, and bias reporting. A grey literature search was conducted through PROSPERO and Trip Database. In collaboration with an expert in systematic reviews, a faceted search of indexed databases including; PubMed, CINAHL, Academic Search Complete, Medline, and PsychInfo was conducted. A hand search was used to accompany the original searches of Medline. The search criteria were bound by referral, the one main search term, followed by an extensive list of cancer, rehabilitation, and medical professional sub-terms. Filters were used to narrow the search which included 'date-range', 'language', and 'subject heading'. The search included all publications since 2011. We extracted data in order to compare and understand the presented outcomes. The full list of search terms used is listed below in Table 1. Database search results were collected and imported into Zotero (Version 5.0, 2021) software before transferring into Rayyan software where exclusion and inclusion criteria were handled (Ouzzani et al., 2016). The results from each search device were gathered, collected, and reviewed for duplicate entries. All citations and abstracts were reviewed by at least two independent reviewers. All citations that were accepted by the reviewers were included in a full-text review which was conducted by at 9 least two of the same reviewers. Through both screening processes, a third reviewer handled and resolved any disagreements. Inclusion/Exclusion Criteria Studies were included if they (1) include persons living with/or beyond cancer, (2) include any age, race, and gender, (3) were in English, (4) include barriers and/or supports to referrals, (5) any international articles written in English, and (6) include one or more key terms. We excluded studies not reported in English, any studies prior to 2011, and if there was a lack of focus on cancer survivorship. Quality Assessment and Analysis In this systematized review, we analyzed the study sample, population, and setting, the level of evidence, and the quality rating. We described the level of evidence by using the Johns Hopkins Evidence-Based Practice Model which includes five levels of appraisal, as indicated in Table 2. Articles classified as levels 1-3 were used for the purposes of this review to reduce bias in the outcomes. Procedures to Address Trustworthiness and Credibility Researchers started using an audit trail at the beginning of the study that included index tracking of initial and final coding, and notes on decision-making to increase dependability and confirmability (Creswell, 2013). Collectively, the research team engaged in continual reflexive thinking by considering and challenging how biases and past experiences might influence data interpretation (Creswell, 2013). Additionally, both the first and last authors (K.P. & K.L), experienced qualitative researchers that performed the data analysis in the first Israeli study, did not actively code data for this study. They did supervise the other researchers during the analysis process so as to not influence or bias results from the first to second study. Various types of data were collected to assure triangulation and establish credibility including video recordings, transcriptions, and field notes from focus group discussions (Creswell, 2013). Member Checking 10 occurred at the end of each focus group, by having note takers summarize discussions to the participants for changes, additional comments and for confirmability and to support credibility (Creswell, 2013). Results A database search was conducted, yielding a total of 862 articles that were imported into Zotero (Version 5.0, 2021) for deduplication, identifying 154 duplicate articles. There were 708 articles from database searching and 59 articles from hand-searching methods that were imported into the Rayann software for manual appraisal (Ouzzani et al., 2016). Due to the inclusion criteria, 657 articles were excluded and 53 articles were assessed for eligibility to answer the PICOT question. Fifteen articles met the full inclusion criteria from the database search. This process is outlined in the PRISMA Flow Chart depicted in Table 1, and Appendix G includes the article title, leveling of evidence, and findings relevant to this review as shown in Table 2. In total, 15 articles were assessed for bias risk using the Risk of Bias table for Randomized Controlled Trial (RCT) and Non-RCT, as well as the Risk of Bias table for Before-After (Pre-Post) Studies with No Control Group (Higgens et al., 2016; National Heart Lung and Blood Institute, 2014). There were 12 articles that demonstrated low bias risk (Oldenburg et al., 2020; Marshall et al., 2019; Mousten et al., 2015; Silva et al., 2020; Nwosu et al., 2012; Wadhwa et al., 2018; Mertens et al., 2017; Low et al., 2018; Schenker et al., 2014; Johnston et al., 2021; Mousten et al., 2019; Feld et al., 2019), two articles demonstrated moderate bias risk (Weaver et al, 2018; Johnson et al., 2010), and one article demonstrated high bias risk. (Maiwald et al., 2021). Four emerging themes including (1) the oncologists' perspectives on rehabilitation, (2) personal characteristics of patients, (3) characteristics of cancer (4) multidisciplinary communication, were consistently found to be related to referral to rehabilitation. All of the 11 articles included in this review were related to referral to palliative care, and the database search revealed that there is little to no research related to the referral of patients LWBC to other areas of rehabilitation services. Theme 1: Oncologist's Perspectives on Rehabilitation Seven articles focused on the oncologist's perspective of rehabilitation. There were five articles that were Level III qualitative studies (Johnson et al., 2011; Nwosu et al., 2012; Weaver et al., 2018; Feld et al., 2019; Schenker et al., 2014), one was a Level IV quantitative (Meritens et al., 2017), and one was a Level III case-control (Oldenberg et al., 2020). One of the barriers found was that many oncologists believed the care they were providing was sufficient, and they could treat the patients' needs on their own without any rehabilitation services (Weaver et al., 2018; Feld et al., 2019). Doctors claimed to have established a rapport with patients and knew the extent of their issues, but patients were most likely uninformed throughout treatment leading to a lack of knowledge of referral (Johnson et al., 2011; Nwosu et al., 2012). This has led to the idea of physicians' concern about burdening patients with extra treatment as they worry the patient might feel overwhelmed (Feld et al., 2019). Authors from three articles indicated that physicians do not want individuals to experience or feel abandoned during treatment: one article was Level IV quantitative, one was a Level III multisite qualitative interview study, and one was Level III qualitative. Oncologists tend to worry about how patients will feel neglected throughout their treatment and how it could affect them (Schenker, 2014), even though these services can help with the transition to end-of-life care (Meritens 2017). 12 Theme 2: Personal Characteristics of Patients Three articles found personal characteristics, including race, age, gender, education level, and socioeconomic status (SES) influenced the rate of referral to palliative care. All three articles were Level 3 articles; one was a quantitative study, one was a population-based cohort study, and one was a quantitative retrospective cohort. One quantitative study revealed Black patients were less likely to receive palliative referrals than white patients (Lee et al, 2021). Researchers of a population-based cohort study demonstrated younger patients were more likely to be referred than older individuals and females received more referrals than males (Mosuten et al, 2015). Data from the same study showed those with higher levels of education had a higher rate of referral than those with lower levels of education (Mosuten et al, 2015). Additionally, researchers of a quantitative retrospective cohort study found there was a disparity in both referrals to palliative care and attendance of services between members of low and high-socioeconomic-status groups. Members of lower SES received fewer referrals and were less likely to attend than their higher SES counterparts (Dalton et al, 2019). Theme 3: Characteristics of Cancer Five articles found that various characteristics of cancer, including specific symptoms, type of cancer, and stage of disease were related to patients' referral to rehabilitation services: two were Level III qualitative studies, one was a Level III Quantitative Retrospective Cohort study, one was a Level III retrospective review, and one was a Level III mixed-method study. Researchers from these articles indicated that various symptoms, including nausea or vomiting, pain, gastrointestinal difficulties, and difficulty breathing were viewed by physicians as a reason to refer patients to palliative care (Johnson et al., 2010; Feld et al., 2019). 13 Malnourishment was a specific symptom that was related to earlier referral to palliative care than other symptoms patients experienced, as well as significant weight loss (Silva et al, 2020). In addition to symptoms prompting physician referral to palliative care, the stage of cancer a patient was diagnosed with was also related to referrals. Patients with stage III and IV tumors were more likely to be referred to palliative care than patients with stage I or II tumors (Silva et al, 2020), and patients who received a cancer diagnosis two or more years prior were more likely to be referred than those who received a diagnosis more recently (Wadhaw et al., 2018). Specific types of cancer, such as breast cancer, were more likely to be referred to palliative care earlier than other types of cancer (Low et al, 2018; Wadhaw et al, 2018). Theme 4: Multidisciplinary Coordination and Communication Six articles indicated that there was a lack of multidisciplinary coordination and inter-service communication between oncology professionals and rehabilitation services: one was a Level II case-control study, one was a Level II mixed methods study, three were Level III qualitative studies, and one was a Level III mixed methods study. An overarching finding from these studies was that there was insufficient communication between the professionals involved in caring for those LWBC, and the benefits of collaboration with other disciplines were not viewed to be worth the difficulties (Maiwald et al., 2021; Low et al., 2018). A barrier to referral noted by two studies was that oncologists were not educated on the benefits that rehabilitation services may provide their patients nor the aspects that may qualify a patient for rehabilitation (Schenker et al., 2014; Nwosu et al., 2012). The authors of the two articles demonstrated a potential lack of formal education on rehabilitation services within medical programs (Weaver et al., 2018; Oldenburg et al., 2020). There was a low percentage of 14 students in pediatric oncology fellowship programs who reported being required to have a rotation in palliative care services (Weaver et al., 2018). Additionally, students in medical school reported a lack of confidence in referring patients to rehabilitation services in terms of qualifications for rehabilitation and the benefits it can provide (Oldenburg et al., 2020). Discussion This systematized review considered the literature regarding the barriers and supports of referral of patients LWBC to rehabilitation services. Palliative care was found to be a prominent area of referral for patients LWBC compared with other rehabilitation services, such as physical or occupational therapy. There is strong evidence characterizing the barriers to referrals due to the oncologists' views or beliefs on the subject. These barriers include a lack of knowledge (87.6%) and awareness (85.6%) of the cancer rehabilitation services and how they can benefit a patient throughout their treatment (Yang et al., 2014). These findings support the evidence from previous articles indicating these barriers prevent a patient from receiving optimal treatment. There is limited evidence supporting the idea of lessening the burden on patients to prevent them from thinking the oncologist gave up on their treatment. There is strong evidence indicating that personal characteristics (including race, age, gender, education level, and socioeconomic status) contribute to lower rates of referral and subsequent poorer health outcomes for those with cancer (Lee et al, 2021, Mosuten et al, 2015). These findings suggest personal biases of providers who refer influence the rate of referral. Although it was found these characteristics hinder referral, previous literature did not find them to be a barrier to referral specifically, despite the indication that these characteristics resulted in 15 general poorer health outcomes for those with cancer (Halpern et al., 2016). These poor outcomes could be related to a lack of referral. There is strong evidence in the literature that the characteristics of cancer are a barrier to referral to rehabilitation services for patients LWBC. The diagnosis, prognosis, and symptoms of cancer were specific factors previously found in research to be barriers to referral (Hui et al., 2016; Lattanzi et al., 2010). These findings support the evidence from this systematized review and may indicate that patients who have early stages of cancer, good prognosis, or lack specific symptoms are overlooked when referring to rehabilitation services. There was not any previous research indicating multidisciplinary coordination and communication as a barrier to referral to rehabilitation for those LWBC. However, the evidence from this review demonstrates that six articles addressed multidisciplinary coordination and communication as a common barrier to referral. One specific barrier noted in these articles includes insufficient communication between healthcare professionals regarding the treatment plan and patients' status. This novel theme should therefore be explored further in research to determine the impact it might have on the referral of patients to rehabilitation services. Limitations Limitations of the systematized review include the design and methodology of the individual studies. The articles were primarily Level 3, which is a lower level of evidence, and there were no Level 1 articles (Higgens et al., 2016; National Heart Lung and Blood Institute, 2014). Despite this limitation, all but one article were found to be high quality, justifying their inclusion in this review. Several measures were taken to ensure comprehension of search strategies, however, it is possible that relevant studies were overlooked, creating a publication selection bias. 16 Additionally, a few of the studies included specific groups in their sample, therefore limiting the generalizability to the larger population of oncology. Some examples of these specific groups include samples from large academic medical sites (Feld et al., 2019), well-developed palliative care programs (Schenker et al., 2014), or areas with cultural taboos surrounding palliative care (Low et al., 2018). The oncologists' perspectives regarding the referral of individuals LWBC to rehabilitation services within these studies may not generalize to the overall population of oncologists. Implications Referral to rehabilitation services is hindered by a variety of factors that lead to subsequent underutilization of rehabilitation services across the cancer care continuum. Further research is needed to determine how to improve rates of referral. No existing literature indicates when referral to rehabilitation services should be implemented to produce effective outcomes. Additionally, this review indicated a novel theme of referral. This should be further examined in future literature since it is a novel finding. Research guided by an occupational-based theory could be beneficial in discovering where in the cancer care continuum rehabilitation referral would yield the most advantageous results for people living with and beyond cancer. Conclusions Referral to rehabilitation services is underutilized across the cancer care continuum for individuals LWBC. Barriers to referral include cancer care providers' lack of education about OT services, personal characteristics (sociodemographic characteristics) of patients, characteristics of patient's cancer, and lack of multidisciplinary communication. These barriers are supported by other literature reviews. However, multidisciplinary communication was not found as a barrier to referral in other literature reviews and is considered a novel finding. Further education and 17 research could aid in the reduction of barriers to referral for rehabilitation services for those LWBC. 18 PHASE II RESEARCH STUDY Research Abstract Those living with and beyond cancer (LWBC) have psychosocial and physical complications, compromising their quality of life (QoL). Occupational therapy (OT) offers a unique service promoting health, well-being, participation, and QoL. However, it has been revealed that OT services are underutilized in oncology care. Phase II of this international study explores the perspectives of healthcare professionals working with persons LWBC regarding the role of OT in oncology, as well as supports and barriers to OT referral. Data was collected through four focus groups with 17 participants. A multiple explanatory case study and a grounded theory approach were used to analyze data. Four overarching themes emerged, including "support for OT referral, knowledge of patient client factors & side effects, barriers to OT referral, and participant context," along with ten sub-themes. The limitations of this research may impact generalizability and depth, such as a predominance of female participants. Future research should examine the impact of education on OT scope of practice on OT referral and recruit participants in diverse ways to address limitations. Addressing system barriers and advocating for the scope of OT may lead to more OT referrals in oncology. Keywords: Cancer, referrals, OT, barriers, supports 19 Introduction Cancer is now considered a chronic condition for many people, which can impact returning to function, participation, and quality of life (Hunter et al., 2017). While cancer treatments' primary focus is to eliminate cancer and prolong one's life, survivors often face residual physical and psychosocial complications that lead to a compromised quality of life (Baxter et al., 2017). There is a strong need for rehabilitation services, specifically occupational therapy (OT), for those living with and beyond cancer (Baxter et al., 2017). Many individuals LWBC that are both in treatment or remission can experience adverse symptoms that influence their overall occupational performance and quality of life. The goal of OT is to maintain and restore function, reduce symptom burden, optimize independence, and improve the quality of life (Alfano et al., 2017). Rehabilitative and OT services are underutilized in oncology care despite the growing evidence and recommendations to regularly screen for the need for these services (Baxter et al., 2017; Stout et al., 2020). Currenlty, there is a paucity of literature surrounding the referral process to OT in cancer care. To support proper referral practices, other healthcare professionals in cancer care need to understand the role of OT and the indications for appropriate referrals (Oldenburg et al., 2017). A lack of referral can stem from a lack of knowledge regarding OT's role in oncology and the lack of communication between providers and employers. These professionals can help coordinate work-based programs with cancer rehabilitation for optimal effectiveness (Alfano et al., 2017). Some barriers that exist that impact referral to rehabilitation and OT services include a lack of knowledge of rehabilitation services by referral sources, understanding in who is appropriate for referral, a lack of rehabilitation services in oncology-based institutions or nearby 20 communities, and a lack of infrastructure supporting an easier referral process (Pergolotti et al., 2019). The purpose of this study was to investigate the perspectives of healthcare professionals in the United States who work with individuals LWBC regarding OT involvement in cancer care. Additionally, an overarching aim was to outline the current barriers and facilitators influencing referrals to OT during and after cancer treatment. The specific aims of this study were to explore the perspectives of healthcare professionals in the United States regarding 1) the role of OT in cancer care, 2) the need for OT services for cancer patients, 3) the current barriers to OT referral, and 4) what is needed to optimize referral. Methods Research Team This study was conducted by seven graduate students studying OT at the University of Indianapolis while receiving support from two experienced qualitative researchers. Of our four focus groups, two were led by student Taylor Brown, one was led by student Alexandria Gilley, and one was led by researcher and data collector Khawla Loubani. All researchers were female and received training through a data analysis research course. Student researchers did not have any relationships established with participants prior to the commencement of the focus groups. At the beginning of the focus group, the scheduled interviewer explained their participation alongside Dr. Katie Polo in this research project. Dr. Katie Polo served as the principal investigator of this research study. Research Design The research coordinators conducted a study using a multiple explanatory case study, allowing compelling evidence to be formed from each case and compared for analysis (Yin, 21 2018). The exempt review was processed through Helsinki, the primary institution's IRB in Israel, and the University of Indianapolis IRB entered into a reliance agreement for data collection in the United States. All participants were asked to give consent to participate through Qualtrics. Participants Researchers utilized purposive sampling methods, including professional contacts and recruitment by phone, email, flier, social media, and word of mouth. This type of sampling method allows the researchers to select individuals and sites that can provide information, as well as participants that relate to the reason for the study and the research problem (Creswell, 2013). Participants consisted of those who met the following criteria: (1) currently working in oncology or cancer care, (2) professional as a nurse, oncologist, social worker, or physician's assistant, and (3) located within the United States. Our goal was to conduct four focus groups consisting of four to six participants, because this number is ideal for identifying themes and conducting a cross-case theme analysis (Creswell, 2013). Data Collection Data was collected through four focus groups, consisting of four to five participants. An interview guide consisted of ten open-ended scripted questions; see Appendix B for details. Open-ended questions in the interview guide allowed the interviewees to open up and share their responses (Creswell, 2013). Other data sources included Qualtrics survey and team member field notes taken during the focus groups. The focus groups were recorded and transcribed verbatim via Zoom and Google Meets. There were no repeat interviews. The timing of the interview discussions averaged 33 minutes with a range of 30-36 minutes. Multiple research team members reviewed the focus group transcripts for accuracy. All participants completed a Qualtrics survey, including a consent form, before the start of the focus groups and demographic questions. 22 Data Analysis Data was analyzed for this case study using a grounded theory approach, which includes three stages: (1) open coding to identify key elements, (2) axial coding to identify relations between the elements, and (3) selective coding to create propositions and a theory to explain the relations (Strauss & Corbin, 1990). During open coding, transcripts from the focus groups were used to form codes or categories, which then formulated a codebook. This codebook allows detailed descriptions, themes, and interpretations of the data (Creswell, 2013). Seven researchers coded the data. Analysts and coders learned proper procedures for data analysis research through a data analysis research course. The data analysis process was supervised by two experienced qualitative researchers. The researchers individually coded the data from the focus groups, followed by collaborative coding in a group setting to derive themes with a consensus of at least five researchers. Data saturation was reached near the end of the second to last transcipt. Demographic data were analyzed using IBM SPSS Version 28 (IBM Corp., Armonk, NY). Credibility and Trustworthiness The use of multiple types of data collection, such as interview questions, detailed transcripts, and observations, permits the extensive amount of data collected from each focus group to be analyzed in great depth (Creswell, 2013). The research team used continual reflexive thinking throughout the process to assist in preventing personal biases thus increasing objectivity. Two experienced qualitative researchers reviewed and supported the data analysis process to ensure dependability and confirmability. Triangulation was used to establish credibility; the group collected various data methods such as video recordings, transcriptions, and field notes (Creswell, 2013). Note takers performed member checking by summarizing discussions to the participants 23 for to confirm intent of discussions, supporting credibility and confirmability (Creswell, 2013). The writers of the study described the participants and setting in detail which enables readers to transfer information to other settings, allowing for increased transferability (Creswell, 2013). Results Participants We recruited 17 professionals for this study: three oncologists, five nurse navigators, six nurses, and three social workers aged 30 to 66 years old. Participants' work experience ranged from 1 to 40 years. Demographics collected from the participants include age, gender, profession/specialization, practice state, prior referral to OT, possible collaboration with OT, and how collaboration with OT occurs. Participant demographics are shown in Table 1. Findings Four overarching themes emerged with subsequent subthemes. The theme support for OT referral consisted of subthemes (a) integration of OT into oncology; (b) knowledge of occupational performance; (c) knowledge of the scope of OT practice; and (d) ideas to support referral. The second overarching theme was knowledge of patient client factors and side effects. Theme three, barriers to referral, includes subthemes (e) insufficient awareness/knowledge of OT; (f) system barriers; (g) clinic barriers; and (h) patient barriers. The final theme, participant context, was separated into subthemes (i) profession; and (j) experience, interaction, and collaboration with OTs. Barriers to Referral Participants explained what is currently inhibiting the lack of referrals to OT in the oncology process. They were asked to describe their knowledge of the scope of OT, and several participant responses revealed a lack of understanding of the profession of OT and the role of OT 24 within oncology. One participant was able to provide a limited description of OT, saying I would say in general occupational therapy isobviously a form of therapyfocusing on those signed motor skills versus the big muscle groups and bone.[and] job related movement. A common topic of discussion was how PT and OT tend to get intertwined in that PT is more commonly known for their scope of practice. A participant shared, I think I kind of intermix PT and OT a little bit. If I was asked to really give a specific difference and who they see I probably wouldn't get it correct. Many expressed there is often confusion around the true description of the profession. One participant explained: You know I think, I think OT is a well-kept secret. Unfortunately, I think it's that you all don't market yourselves very well. Everybody knows what PT is. Everybody knows that. Unless we have something really specific, if somehow we happen to get referred to an occupational therapist, we don't know half of what you all do. You have a lot to offer but nobody knows you're nobody knows you're around. Participants expressed barriers in the system, especially regarding the insurance process for receiving OT services. Patients may not be able to afford all of the services, which can limit the treatment they can receive. A participant stated: We pretty aggressively hate on cancer centers of America they do this queen for a day system, where they have, you see a nutritionist, a PT, an OT, a chiropractor, etc. You know, they have to see all these different subspecialties and then make you individually bill for all of them. And the patient actually can't afford to go to all those subspecialists. So it's got a bad reputation in cancer for that reason. That, you know, we try to do everything under one roof as much as we can. 25 A prominent sub-theme is that clinics have difficulty making referrals due to other priorities, or oncologists might be unsure which service to refer to. A participant shared, We refer to physical therapy as a start, then occupational therapy as a second step or a parallel. Individuals mentioned that it would be helpful to delineate clearly who handles what in the intervention process. It was also mentioned how physicians have several patients to see on a day-to-day basis and often do not even think of OT at the moment as a referral option. A participant reported: I'll just be really honest, clinic, clinics are busy. Physicians are having trouble seeing a lot of patients. The nurses, unfortunately, unless they've been tuned in the nurses, don't think of it. And I think they just haven't been exposed enough. Oncologists also have to make referrals to these services, which can inhibit it from happening due to other priorities. Individuals voiced their opinion, The biggest barrier was the oncologists. We shouldn't wait on giving someone a service that is necessary while they're getting treatment but it was definitely in my experience an afterthought. Participants also shared how there may be a lack of OTs in the clinic, eliminating the ability to refer altogether. Patients often undergo several treatments at a time, which can drain their energy levels. Participants expressed how the universal trait of all cancer patients is fatigue and overwhelmingly tiring on a physical, emotional front. Patients also may not have the time or money to add other services to their schedule on top of what they are already doing. There may be a limited appointment window for these individuals, and adding another service can be overwhelming. A participant shared, I think oftentimes when the patient is in the throes of treatment, it's hard for them to think about adding an additional appointment. It was found that patients may also be more reserved when it comes to the need for OT or PT services and want to just focus on one treatment at a time. But it seems more times than not patients are so focused, driven on one treatment to the next, which, that's their reality 26 right now is Hey, I need to do this to get to the next step. Do this chemo. Do a CT. Let's see how it is. A participant explained how a lot of this can be due to a lack of awareness and resources on the patient side. Patients do not realize what else can help them as they are hyper-focused on other treatments. A participant explained: Some patients think that they've been through so much that they don't realize that they don't have to be in this kind of state; they can actually improve afterward as well some patients are thinking that this is their new normal. So we do want them to be able to do as much as they can on their own and improve. The individuals expressed barriers limiting referrals to OT during the cancer survivorship continuum. Participants expressed a lack of awareness or knowledge of OT, patient barriers, and how clinics tend to have other priorities in the referral process. Participant Context Participants expressed varied levels of context for OT. All participants had some knowledge of OT as a profession based on their personal experiences, professional interactions, and collaboration with OTs. Personal experience with OT included knowing occupational therapists or OT students and/or use of OT services for themself or a family member. A participant reported, My son was in OT when he was small so I'm familiar with that... then my sister is in OT school. So she often has to create different tools for people in certain situations. So that's what I know. Participant context of OT also came from professional interaction and collaboration with OTs. Most of the participant context of OT came from professional experiences working with OTs. Participants reported having knowledge of OTs' work with sensory processing disorders in pediatric settings and some knowledge of OTs' role in oncology. One participant stated, I do know the OT I worked with most closely when I was at radiation oncology. She 27 helped a lot with neuropathy issues and lymphedema issues. Additionally, a participant shared her experience with OTs helping patients post-mastectomy and post-node removal patients regain upper extremity function, By working with the OT clinics, she was able to regain function, you know, have a sleeve that fit gets fitted for one actually, you know, regained use of her dominant arm, which was a huge deal for her. Most participants relied on personal contact with OT as their source of knowledge for the scope of practice through family members receiving OT services rather than professional experience and being educated on OTs presence and role in their setting. Support for Referral Participants expressed their current understanding of the purpose of OT as it relates to the oncology setting. The subtheme of knowledge of OT scope of practice was delineated into partial knowledge and sufficient knowledge based on participants' descriptions of the services OT provides. Some responses indicated that participants had only partial knowledge of the scope of OT, focusing on side effects in patients resulting from oncology treatment or the cancer process. The participants mentioned several side effects that might prompt referral to OT in their settings, including weakness, fine motor difficulties, fatigue, and peripheral neuropathy. It was also noted that referrals to OT are made to address the long-term side effects that cancer or oncology treatments may yield. One participant stated, I refer to OT mostly for peripheral neuropathy and kind of assistance with tools like that... Generally, just again, trying to kind of assist with activities of daily living type things. But probably the neuropathy is the biggest referral. Participants mentioned fatigue and neuropathy multiple times, though these are a small part of the OT scope of practice. Other participants provided more details regarding why they might refer to OT services within the oncology setting, indicating a sufficient knowledge of the scope of OT practice. It was noted that the side effects from cancer or oncology treatments often impact 28 patients' daily activities, and a few participants discussed how specific side effects might relate to occupational performance deficits observed in patients. The participants demonstrated adequate knowledge of the profession of OT while also indicating an understanding of the impact that cancer treatments may have on their patient's overall function and engagement in occupations. It was reported that the impact of side effects was most often seen in patients' abilities to engage in activities of daily living and to function safely within the home environment. One participant stated: OT is a type of rehabilitation it's closely related to physical therapy but focuses more on task-oriented or real goal-specific things as opposed to generalizing strength training, for example, spoon use after stroke or swallowing efficiency, things like neuropathy or fatigue in cancer as opposed to the goal of having a general physical goal where like 30% of use back actually, having a focused goal with like an ADL purpose. A few participants expressed a deeper understanding of the scope of OT within the oncology setting through the relation of side effects to occupational performance deficits. It was also noted that participants used clinical experiences to describe how side effects impacted the occupational performance of oncology experience, and this application of knowledge provides support for referral to OT based on the integration of knowledge and experience with patients. This second subtheme, knowledge of occupational performance, was also separated into partial or sufficient knowledge of occupational performance. Partial knowledge was signified by the description of side effects loosely tied to occupational performance, while sufficient knowledge involved comments describing the impact of side effects on patients' occupations. One participant explained, I mean neuropathy can be as little as discomfort and walking or as much as writing with the pen or buttoning their shirt for balance issues. The side effect that was emphasized as 29 having a substantial impact on cancer patients was fatigue, as well as subsequent shortness of breath and weakness. These factors were noted to affect the functioning of the participants' patients negatively, and participants expressed that assistive devices are helpful in combating these side effects, indicating support for referral to OT services in those situations. Additionally, a few participants pointed out that it can be challenging to directly obtain information about changes in daily functioning from the patients. It was mentioned that family members often provide insight into the impact that side effects have on patients' daily lives. The participants' understanding of how to obtain information about patients' occupational performance supports the referral process, as it guides them in asking questions to the family members and the patients. One participant described this scenario, saying: I feel the family is usually where we hear that from. Usually, the family will say things like, you know I'm worried about them falling, um they're not eating like they should, they're not bathing well on their own, um they're not as active. So I feel like it's usually the family who will first make a comment about just their decrease in functioning. Another prominent subtheme in support of OT referral is the integration of OT in oncology. The participants discussed processes currently in place at their facilities that promoted OT involvement in oncology patient care. It was expressed that many participants try to ask patients about any side effects that they might be experiencing to identify the need for OT services earlier. Several participants also mentioned that their facilities incorporated inpatient OT into the care plan so that patients could receive OT services while still in the hospital, as it was noted that appointments in outpatient following the hospital stay may be difficult for patients to attend for various reasons. One of the participants worked as a breast surgeon in a facility that had a revital 30 program, which included an automatic referral as a part of the post-surgery protocol. The participant further described the program: So for me, we do refer all the post-surgical patients. And then we send them back during their survivorship period from my perspective because I'm the surgeon if they have continued range of motion issues and really the big thing we focus on is lymphedema. Other participants mentioned that their facilities schedule OT evaluations alongside other services to reduce the need for patients to attend multiple appointments. It was noted that a new protocol had recently been enacted in which OTs would come into the infusion clinic to assess the need for OT while patients were simultaneously receiving other treatments. The participant at this facility stated: So we recently have really tried to make use of our partnership with one of our local groups that we refer to a couple of times in this conversation and so what I have agreed to do with them, that group is to have them actually, physically come into the clinic in our infusion room and do some assessing, talking to the patients directly without, you know, kind of with an agreement that if they see something, then they'll say something to us and we'll refer based on that. So, just kind of an extra set of professional eyes. They know what they're looking for, or what they're listening for in conversations. In addition to identifying current processes supporting OT referral, the participants provided several suggestions to increase the referral of oncology patients to OT. This subtheme to support OT referral includes ideas to simplify and streamline the process of OT referral, as well as reduce the burden of OT appointments for patients. Several participants mentioned that coupling OT with other services, such as infusions or chemotherapy, could increase the utilization of OT services since it would address the issue of patients having multiple weekly appointments. It was also 31 stated that providing co-treatments with PT may be beneficial for the same reason of reducing patient burden. A common suggestion among participants was to provide more specific outlines of what OT can contribute to the oncology process, such as through evidence-based case studies. One participant explained: Yeah, I think like you mentioned case studies where it's outside the box, and we know the general overview of what you do. But there's a lot more to it and when we see that, then it helps to think "Oh my gosh. Yeah, this patient I can use that." Creating more specific resources for healthcare providers may increase confidence in their knowledge of OT scope of practice, which in turn can further increase referrals to OT services. Knowledge of Patient Client Factors & Side Effects Participants named many cancer treatment side effects that reduced patient occupational performance. Although client factors vary per client and are influenced by type of cancer, a typical client factor discussed by participants was fatigue. General fatigue inhibits patients from participating in the occupations they did prior to treatment, reduces performance, and interferes with socialization. One participant noted: One of the biggest issues is always fatigue, across the board is the fatigue, the energy loss. I think it's very dependent though on the cancer as well because if you're talking about head and neck cancer or you're talking about prostate cancer I mean it's very different. A participant, who is a practicing surgeon, stated loss of motion and sensory changes occur as a result of cancer-related surgeries, like mastectomies and lymph node removals. These client factors reduce mobility and interfere with client function. Multiple participants reported weakness and lethargy as culprits for decreased occupational performance: 32 I've had a couple of patients who just have a lot of weakness afterward and need to regain that strengthThe weakness had caused her to lose activity as well. So she was even having some shortness of breath and things because she just hadn't been as mobile as she should have been. Some client factors are long-term and impede client functioning after treatment is complete. Participants expressed that fatigue, chemo brain, and neuropathy or pain often persist and interfere with occupational performance after treatment concludes. This theme highlights a need for interventions to improve occupational performance for cancer patients during and after treatment. The client factors and side effects noted by participants (fatigue, weakness, sensory changes, loss of range of motion, cognitive changes, pain, lymphedema) fall under OT's scope of practice. Visual Diagram A visual diagram was developed to capture the interrelated conditions (subthemes) and interconnections of the supports and barriers to OT referral in oncology care, as noted by the focus group participants, see Figure 1. While supports and barriers were prominent in this research study, it was also essential to understand the relationships between participant context, knowledge of client factors, and solutions to support referrals. The diagram simulates using the participant context and their knowledge of client factors to create solutions to support referrals. This will trickle into using the wrecking ball to knock down the barriers, shown as the brick wall, most commonly reported by the participants to increase referral to OT. Discussion The current study was part of a more extensive international study between researchers in both Israel and the USA that explored the perspectives of healthcare professionals regarding the 33 barriers and facilitators of OT referral for persons living with or beyond cancer. The current study had four aims: 1) to explore the perspectives of healthcare professionals in the USA regarding the role of OT in cancer care, 2) to explore healthcare professionals' knowledge of the need for OT services for cancer patients, 3) to understand the current barriers for referrals to OT from healthcare professionals' perspectives, and 4) to explore what is needed from healthcare professionals perspective to optimize referral of patients to OT. The outcomes of this study have provided further evidence that there is room for improvement in the referral of OT in oncology care in the United States. Through multiple focus groups, four themes were commonly observed; support for referral, barriers to referral, knowledge of patient client factors/side effects, and participant context. Participants throughout the focus groups explained their prior experiences with OT referral in oncology care while also describing briefly what OT services provide for oncology care. This information produced the subthemes "Integration of OT in Oncology" and "Knowledge of the Scope of OT Practice." The subtheme "Knowledge of the Scope of OT Practice" comprised two types of knowledge: partial knowledge and sufficient knowledge. An intersection between the theme "knowledge of patient client factors/side effects" and the subtheme "knowledge of occupational performance" was identified a few times throughout data analysis, indicating that some participants inadvertently had partial knowledge about how patient side effects from cancer cause a decline in occupational well-being and performance. The other intersection that commonly arose throughout our data analysis was between "knowledge of patient client factors/side effects" and the subtheme "knowledge of the scope of OT practice". The results from this intersection show most participants had partial knowledge of the scope of OT 34 practice due in part to the experiences and side effects their patients experienced in cancer treatments. The current literature supports the findings of this study. Previous researchers identified the underutilization of OT services in oncology care regardless of growing evidence for the need for rehabilitative services. Data from this study found an underutilization of referrals to OT services for patients LWBC for a variety of reasons (Baxter et al., 2017; Stout et al., 2020). The primary reason for this lack of referral is a lack of understanding of OT's scope of practice and role within oncology. This finding is supported by previous literature which argues that healthcare professionals must understand OT's role in oncology to support proper referral practices (Oldenburg et al., 2017; Alfono et al., 2017). Data from this study indicates that the lack of occupational therapists available in outpatient oncology clinics and integrated into inpatient oncology settings is a barrier to OT referral. This indication is supported by Pergolotti et al.(2019), who cite the lack of services in oncology-based institutions or nearby communities as a barrier to referral. The current literature did not discuss patient barriers that directly impact referral to OT. Data from this study cites lack of time and resources as patient-specific barriers that prevent referral to OT. Many participants discussed patients being inundated with follow-up appointments and time, transportation, and patient energy as deterrents for referral. Limitations The limitations of this research may impact generalizability and depth. The predominant participation of individuals from the nursing field, with a scarcity of medical doctors such as oncologists and surgeons, introduces a possible bias that restricts the applicability of findings to a broader medical context. The overrepresentation of female participants adds another layer of 35 limitation, potentially skewing the results if gender-related nuances exist in the topic under investigation. However, data saturation was achieved by the end of the third focus group due to having consistent data over multiple samples to conclude. The use of Google Meets as a platform, combined with a group setting, may have inadvertently constrained the participants from freely expressing conflicting views or opinions that involve professionals from other disciplines. This limitation could compromise the diversity of perspectives essential for a comprehensive understanding of the subject matter. As such, it is crucial to acknowledge these constraints when interpreting the study's outcomes and to recognize the need for more diverse and extensive participant inclusion in future research endeavors. In addition, it is possible that focus group members felt unable to state opinions in a group setting due to having multiple professions or colleagues present. To offset this possible limitation, member checking was completed at the end of each focus group in which note-takers discussed the findings to allow for additional comments and changes and confirmability and credibility (Creswell, 2013). Practice Implications Throughout our interviews with oncology professionals, a common topic of underrepresentation and weak marketing of the OT profession was mentioned. Marketing allows professionals and consumers to function together and increase consumer satisfaction with products and services. This could increase understanding and knowledge of the scope of OT practice to improve referrals. A way to achieve this would be to create resources describing OTs' roles and services for other healthcare professionals to reference daily. These resources could also model methods of proper referral through the provision of patient examples detailing which symptoms warrant OT referral, as well as a list of clinics with available OT practitioners in the area. 36 Future research should further examine and explore the impact of education for OT referral sources surrounding OTs scope of practice. Specifically, if referral sources received education to OT services, does this impact referral rate and access to OT services. Future studies should recruit in different ways and for a more extended period of time to gain more oncology professionals' perspectives to address the limitations of the current study's results. Addressing barriers to referral, including streamlining referral processes and easing the burden of multiple appointments for patients, as well as providing training and resources regarding the scope of OT and indications for referral may lead to more OT referrals. Conclusion This study highlighted prominent themes discussed among oncology professionals regarding barriers and facilitators of OT referrals. There are barriers to OT referral within the oncology setting related to oncology providers' lack of knowledge of services, lack of education on referral processes, and lack of accessible therapy services. These findings are supported by previous literature; however, this study also contributes novel information concerning patient-specific factors noted as barriers to the OT referral process. Education regarding the scope of practice of OT through OT based case studies will address initial barriers to OT referral within oncology settings. 37 References Alfano, C. M., Kent, E. E., Padgett, L. S., Grimes, M., & de Moor, J. S. (2017). Making cancer rehabilitation services work for cancer patients: Recommendations for research and practice to improve employment outcomes. PM&R, 9. https://doi.org/10.1016/j.pmrj.2017.06.019 American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 7412410010. https://doi.org/10.5014/ajot.2020.74S2001 Baxter, M. F., Newman, R., Longpr e, S. M., & Polo, K. M. (2017). 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Corporation for Digital Scholarship. 43 Appendix A Table 1 Demographic data Participant 1 Age Education (Yrs.) level 47 MD Profession Med Specialization Practice Years in Collab. Active / Department Setting cancer care with OT Referral to OT Breast Academy 15 Yes (often) Yes Clinical Commun 23 No No Research ity 40 Yes Yes Surgeon 2 66 MA Nu Coordinator 3 60 BA Nu Thoracic Other Oncology (sometimes) Nurse Navigator 4 65 MA Nu Registered Other 40 No No Manager, Commun 4 No Yes Nursing ity 24 No Yes Nurse Abstractor 5 35 Associates's Nu Services 6 54 Associate's plus a year towards BSN Nu Primary Commun Clinic Nurse ity 44 7 45 BA Nu Clinic Nurse Commun 1 No No ity 8 - - Med Oncologist - - - - 9 - - Nu - - - - - 10 30 MA SW Oncology Hospital 4 No Yes Social Worker 11 56 MA SW Social Worker Hospital 7 No No 12 38 MD Med Medical Hospital 7 Yes Yes Oncologist 13 36 MA SW (sometimes) Program Commun Manager ity 8 No No 14 54 BA - - - - - - 15 49 BA Nu Nurse Commun 15 No Yes Navigator ity Breast Hospital 10 Yes Yes 16 43 Associate's Nu Navigator 17 47 Med Nu Mean (SD) Mean BA =4 Nurses- Median (SD) (23.5%) 10 (IQR) = MA= 5 (58.8%) N% 48.43 (29.4%) - (sometimes) - - Hospital= 4 (23.5%) Commun Median Yes = 4 Yes = 8 (47.1%) (IQR) (23.5% ( No= 5 (29.4%) ity= 6(35.3%) 10 (7-23) - No= 9 (52.9%) - 45 (11.3 MD = 2 Social 1) (11.8%) workers 3 Rang Associate=3 (17.6%) (5.9%) e= (17.6%) MD =3 Other=2 (17.6%) (11.8%) 30-66 Academy =1 Note. Three participants had missing demographic data. We attempted to contact them after the interviews to complete the missing information but were unable to reach them. All participants were women, except participants 8 and 12 were men. Med=Medicine; Nu=Nursing; SW=Social Work. 46 Appendix B Table 2 Interview Guide Interview Guide Study Aims Interview Questions Relating to Aims Aim 1: Explore the perspectives of healthcare What do you know about occupational professionals regarding the role of therapy in general? occupational therapy to the care of cancer What do you know regarding occupational patients. therapys role in oncology? Aim 2: Explore healthcare professionals How does cancer affect your patients daily knowledge of the need for occupational functioning and activities of daily living therapy services for cancer patients. (ADL)? What are the signs and/or indicators to refer your patients to occupational therapy? What limitations in your patients daily functioning might prompt you to refer to occupational therapy? What kind of functional impairments do your patients have? How does cancer affect patients daily functioning/routines? 47 Aim 3: Understand the current barriers to What are the reasons that cancer patients occupational therapy referrals from healthcare are not referred to occupational therapy? professionals perspectives. Aim 4: Explore what is needed to optimize What do you think is needed to optimize referrals to occupational therapy. the referral of your patients to occupational therapy? Additional Questions Is there anything else you would like to share? Note. The interview guide is sectioned into two different columns; the left colum indicates the studys specific aims while the right colum indicates interview questions that correspond to the study aims. 48 Appendix C Figure 1 Visual Diagram of Supports and Barriers of Referral to Occupational Therapy  ...

... Using an Occupational Therapy Lens to Explore the Role of Grandparenting: A Thematic Synthesis Abigail Crouse, Kaitlin Goedde, Jonathan Guan, Emma Magee, Adrienne Numbers, and Aryn Snyder December 19, 2023 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 initial direction of the research advisor: Dr. Lucinda Dale, EdD, OTR, CHT, FAOTA Reviewed by: Dr. Beth Ann Walker, PhD, MS, OTR, FAOTA Using an Occupational Therapy Lens to Explore the Role of Grandparenting A Research Project Entitled Using an Occupational Therapy Lens to Explore the Role of Grandparenting: A Thematic Synthesis 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 Abigail Crouse, Kaitlin Goedde, Jonathan Guan, Emma Magee, Adrienne Numbers, and Aryn Snyder Accepted on this date by the OTD Program Director: 12/20/23 Alison Nichols, OTR, OTD OTD Program Director Associate Professor of Occupational Therapy Date 2 Using an Occupational Therapy Lens to Explore the Role of Grandparenting 3 Approximately 70 million grandparents constitute one-third of the U.S. adult population in 2017, marking a significant 24 percent increase since 2001 (Bulletin, 2017). Baime (2023) highlights a significant demographic trend in recent U.S. Census data revealing that approximately 7.1 million American grandparents cohabit with their grandchildren under 18, with 2.3 million actively assuming caregiver responsibilities. The growth of caregivers role reflects the expanding influence that grandparents have on their families and communities (Bulletin, 2017). Across the lifespan, the bond between grandparents and grandchildren yielded a positive influence enhancing their engagement in meaningful occupations, diverse roles, and enriching relationships (Harmon et al., 2022). Grandparents play a significant role in upholding the emotional vitality of their relationships with grandchildren, as asserted by Bangerter and Waldron (2014). Their assumed responsibility in this regard stems from the unique insights they develop into family dynamics, which shape the grandparent-grandchild (GP-GC) relationship. Mansson (2016) emphasized the significance of exploring this dimension in academic literature, not solely for the welfare of grandparents benefiting from these relationships but also in light of the changing societal dynamics driven by factors like diverse family structures, increased life expectancies, a rise in dual-worker households, and elevated rates of family breakdown. The grandparents role is exemplified by the growth of supplementary grandchild care in the United States in recent decades, as documented by Kim et al. (2017). The increased frequency of interaction between grandparents and their grandchildren was attributed to not only the considered role of grandparents but also the extended life expectancy of grandparents (Bengtson, 2001). In 2022, multigenerational households surged to 4.7 percent of all households in the United States, with nearly 35 percent of grandparents in such households taking on the primary caregiving role, particularly those aged 60 and over (Saxena & Brotherson, 2022). Consequently, Using an Occupational Therapy Lens to Explore the Role of Grandparenting 4 as Kim et al. (2017) pointed out, grandparents will likely face increasing demands for supplementary childcare in the future. The distinctive challenges faced by both grandparents and grandchildren offer occupational therapy (OT) practitioners the chance to develop and execute initiatives and services that cater to their occupational requirements enabling therapists to fill generational gaps in kinship families and empower them with resources for a successful transition into a multi-generational household (Romsdal & Wavra, 2021). Baker and Silverstein's typology for grandparent care distinguishes between providing supplementary childcare for working parents and offering custodial care when adult children are unable to raise their own children (Baker et al., 2008). Chan (2023) expanded on this, illustrating the diverse caregiving roles of grandparents ranging from occasional caregivers in non-co-resident households to co-parenting supplementary caregivers in multigenerational households and even becoming custodial caregivers in skipped-generation households. Stephens (2020) noted that over 50 percent of caregivers in grandparent-headed households are aged 45 to 59, and fewer than 10 percent are those aged 70 or older. The roles undertaken by grandparents can evolve as they adapt to the evolving needs of their growing grandchildren and the shifting dynamics of family life, such as geographic proximity, age considerations, and the pursuit of personal development (Bangerter & Waldron, 2014; Stephens, 2019). Chan (2023) defined supplementary caregivers as providing care between 10 and 29 hours weekly or staying overnight, often engaging in co-parenting or childcare within multigenerational households. Bangerter & Waldron (2014) highlighted variations in traditional family roles with some grandparents acting as enjoyable companions and others engaging in long-distance grandparenting. In comparison, the term grandfamilies, defined by Freeman et al. (2019), is a family structure where grandparents co-reside and undertake custodial caregiving. Using an Occupational Therapy Lens to Explore the Role of Grandparenting 5 As a result, fundamentally unique experiences included grandparents viewing their role as a second chance at parenting and actively engaging in family maintenance (Bangerter & Waldron, 2014). Fifty-five percent of grandparent caregivers have been the primary caretakers for three or more years, emphasizing the long-term nature of their responsibilities (Stephens, 2020). In a related context, Freeman et al. (2019) noted that in contrast to conventional families, grandparent caregivers often indicate diminished family cohesion and heightened intra-family strain, contributing to a more complex communicative environment. Many factors contributed to grandparents taking on such responsibilities including abandonment, incarceration, divorce, limited childcare options, unemployment, as well as health and mental health challenges (Tracy et al., 2022). Dennis and Brewer (2016) added that the custodial role extends into children's adulthood with grandparents continuing to provide financial and emotional support. Chan (2023) described that the grandparent-grandchild (GP-GC) relationship could have a positive or negative impact on the grandparent, which aligns with the Role Enhance and Strain Theory; these theories combined can help explain the diverse roles of grandparents. Relationship enhancement or strain can influence the other roles grandparents play in their family and community (Luo et al., 2012). This concept of influence aligns well with the Life Course Theory, which acknowledges that one family member can be influenced over time by intrinsic and extrinsic factors such as society, culture, life events, phases of life, location, and passage of time (Jones et al., 2019; Lersch, 2023). Those factors interlock and cause changes in other family members' lives (Elder, 1998). Scholars historically have used Life Course Theory to understand the interconnectivity of family members as they progress through life (Bengtson & Allen, 1993). The relationships between family members across generations refer to the term intergenerational solidarity. The Family Systems Theory suggests that families consist of subsystems and Using an Occupational Therapy Lens to Explore the Role of Grandparenting 6 emphasizes interrelationships among family members within the family system (Bowen, 1966). The subsystems are contained in a broader social context, and these impact the functioning of the grandchildren (Crosnoe & Elder (2002). According to Freeman et al. (2019), children in grandfamilies maintain important connections to family, community, and culture, recognizing their grandparents as sources of positive influence and contributors to an improved quality of life. Mansson (2016) suggested that encouraging children to spend time with their grandparents not only benefits the children but also provides parents with insights into ensuring their own parents' happiness and well-being. Consequently, it is common for parents to actively endorse and facilitate interactions between their children and grandparents recognizing the multifaceted benefits arising from these intergenerational relationships (DAstous et al., 2013). According to Stephens (2019), grandchildren with college-educated grandparents exhibited higher levels of literacy and math skills upon entering formal schooling compared to those whose grandparents had attained a high school education or less. In an attempt to identify reciprocal benefits, Mansson (2016) noted that grandparents felt a sense of fulfillment and connection within their role as a grandparent. The identified mutual investment towards the GP-GC relationship also significantly contributed to the overall beneficial experience for both populations. Bangerter and Waldron (2014) found that consistent communication between a grandparent and grandchild positively influenced maintaining their intimate relationship, specifically for long-distance GP-GC relationships. Additionally, Marcus (2017) identified the pertinent benefit of grandchildren developing a positive attachment relationship with multiple figures. Overall, the crucial role of a grandparent was noted through the positive benefits, including fostering relational closeness through shared activities, providing Using an Occupational Therapy Lens to Explore the Role of Grandparenting 7 social support, and family satisfaction throughout the relationship (Bangerter & Waldron, 2014). Grandparents' dedication provides children with valuable elements like time, love, compassion, and a sense of family, enriching the lives of those who might otherwise lack familial support (Dennis & Brewer, 2016). Alongside the numerous beneficial outcomes for a GP-GC relationship, research also identified various negative outcomes and stressors for both the grandparent and grandchild. With a shift in the caregiving role, additional stressors brought onto grandparents may be exacerbated by the uncertainty of the duration of care, including financial strain, mental wellness, and physical well-being of the family, which may ultimately cause elevated stress and depressive symptoms for grandparents and behavioral-emotional distress for the grandchild (Tracy et al., 2022). According to Freeman et al. (2019), older caregivers, particularly grandparents in caregiving roles, often encounter financial challenges, with approximately 20 percent reporting income levels below the poverty line, further indicating a likelihood of living in financial hardship. Additional stressors as the grandparent engaged in a caregiver role included increased time demands, sleep deprivation, challenges associated with aging, a shift in previous parenting methods, and intergenerational issues related to technology use and assisting with homework (Wood et al., 2016). Overall, older adult caregivers, particularly grandparents, may face a higher vulnerability to psychological difficulties, including feelings of social isolation, depression, and stress (Freeman et al., 2019). It is important to note that children raised in a custodial family with grandparents have increased rates of depression or anxiety when compared to grandchildren raised in parental family setups (Freeman et al., 2019). In specific scenarios where a grandchild is placed under the care of a grandparent due to parental neglect or abuse, the upheaval in conventional family roles Using an Occupational Therapy Lens to Explore the Role of Grandparenting 8 may cause distress among grandchildren and other family members, ultimately adding to the caregiving challenges faced by custodial grandmothers (Tracy et al., 2022). Throughout the intricacies involved in the establishment of grandfamilies, the research noted triggers for stress and trauma experienced by both grandparent caregivers and their grandchildren (Freeman et al., 2019). Overall, significant life events, school commitments, peer relationships, and geographic separation from a grandchild can result in relationship shifts, including the possibility of decreased emotional closeness between the grandparent and grandchild (Bangerter & Waldron, 2014). Kim et al. (2017) found that Asian and European countries and the United States have observed an increase in supplementary care of grandchildren. In American Indian communities, the raising of grandchildren operates outside legal adoption or guardianship, with an estimated 100,000 grandparents raising grandchildren under the age of 18 (Dennis & Brewer, 2016). As American Indian grandparents balanced sole custody, they faced poverty, limited access to resources, and physical limitations (Dennis & Brewer, 2016). In research done by Stephens (2020), African-American grandparents were more likely to guide their grandchildren on topics of behavior, faith, and culture compared to their White and Mexican-American counterparts, which led to their grandchildren valuing their teachings throughout adolescence and adulthood. Compared to the African American community, the Latino culture, which is typically a close-knit family structure, grandparents are typically involved in the upbringing of grandchildren, with many grandparents residing nearby and providing part-time caregiving (Xie et al., 2018). Occupational therapy, as a discipline, is grounded in the belief that meaningful engagement in various activities is pivotal for health and well-being (Harmon et al., 2022). OT Using an Occupational Therapy Lens to Explore the Role of Grandparenting 9 practitioners therapeutically employ everyday life activities with their clients to enhance or enable their participation by leveraging their understanding of the dynamic relationship between the client, their involvement in meaningful activities, and the surrounding context (Occupational Therapy Practice Framework, 2020). Understanding external factors, such as a clients role or family dynamic, allows an OT to create goals and interventions with a holistic approach that is client-centered and meaningful to the client (Gentry et al., 2018). We see this from a global perspective as the World Federation of Occupational Therapy (Sinclair, 2019) acknowledges that diversity and culture remain at the top of their agenda due to the undoubted impact that both have on the client. OT practitioners can leverage their expertise to address the unique challenges within kinship families, bridging generational gaps and facilitating a successful transition into multi-generational living (Romsdal & Wavra, 2021). Therefore, the purpose of this study was to explore the literature to determine the benefits and challenges associated with grandparenting in various cultures and identify implications for occupational therapy practice. Methodology Considering the extensive range of OT practices, encompassing the delivery of personalized and excellent care for individuals potentially identifying as grandparents, the researchers sought a methodology that could offer comprehensive contextual insights into a diverse array of experiences highlighted in qualitative studies (Walker et al., 2016). A thematic synthesis is a qualitative method that seeks to derive conclusions by identifying common themes across diverse studies (Lucas et al., 2007). Thematic synthesis involves extracting data, coding themes line by line, creating descriptive codes, exploring similarities and differences among these codes to categorize them into descriptive themes, and generating analytical themes in alignment with the research question (Thomas & Harden, 2008). Using an Occupational Therapy Lens to Explore the Role of Grandparenting 10 Researchers initially conducted a systematic review of the literature available via the EBSCOhost database. Inclusion criteria included cohort studies of level III, qualitative studies of mixed methods or mixed quantitative meta-synthesis studies, and articles consisting of grandparent or grandchildren participants with no age limit. Exclusion criteria omitted level I systematic reviews and meta-analyses, level II quasi-experimental studies, practice guidelines, quality improvement, program evaluations, case reports, mixed-method studies, and articles written in non-English languages. The researchers search strategy was performed in a coordinated and collaborative manner as each researcher utilized specific key terms (Table 1) through a systematic approach of the following databases within EBSCOhost: CADTH, CINAHL, Cochrane Library, Ebsco eBooks, ERIC, Grey Literature, Google Scholar, PEDro, Prospero, PubMed, Medline, OTSeeker, System Review Data Repository. The researchers yielded a total of 3,259 articles. Table 1 Key Search Terms Searched in Databases Key search terms Shared experience and grandparent Multicultural and grandparent or grandchild Activities and grandparents Shared experience and grandchild Multicultural and grandparents or grandchildren Activities and grandchild Interpersonal relation and grandparent or grandchild Money and grandparents Play and grandparents/grandchildren Interpersonal relations and grandparents or grandchildren Financial and grandparents Quality time and grandparents/grandchildren Social participation and grandparent and grandchild Communicate and grandparent or grandchild Shared experience and grandparents Using an Occupational Therapy Lens to Explore the Role of Grandparenting 11 Interaction and grandparents/grandchildren Social participation and grandparents and grandchildren Communicate and grandparents or grandchildren Co-occupation and grandparents/grandchildren Play or games and grandparent or grandchild Multilingual and grandparents or grandchild Engagement and grandparents/grandchildren Play or games and grandparents or grandchildren Multilingualism and grandparents or grandchildren The researchers exported the articles from the databases into Zotero, which allowed researchers to download, organize, annotate, cite, and share articles amongst the research team members (Zotero, n.d.). Of 3,259 articles, 46 were duplicates, resulting in a pool of 3,213 articles to be reviewed. Once all duplicates were deleted, the researchers exported articles into Rayyan, a free web tool that speeds the process of screening literature by allowing researchers to select studies and remove bias from the review through a blinding process to prevent viewing others' work (Rayyan, 2023). One researcher had control over this tool and was able to enable and disable blind viewing. The researchers enabled blind viewing while the titles and abstracts of the 3,213 articles were reviewed independently. Once the researchers completed this process, the researchers disabled the blind viewing setting yielding 517 articles categorized as in conflict. To resolve disagreements about including or excluding articles, the research team discussed each article, and 46 articles were added based on majority agreement. At this stage, the exclusion criteria was updated by eliminating articles published before 2012, resulting in the exclusion of 98.6% (3,131) articles. Forty-six articles were appraised using the Johns Hopkins Evidence-Based Practice Model for Nursing and Healthcare Professionals (Dang et al., 2021). The researchers engaged in a peer-reviewing process after each researcher individually appraised their assigned articles. If the researchers experienced disagreements, the entire research team discussed the relevancy of the Using an Occupational Therapy Lens to Explore the Role of Grandparenting 12 article with advice provided by the principal investigator, who made the final decision to include or exclude the article. As a result of the appraisal process, nine articles were included in the analysis. Data extraction The researchers used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) as guidance during the process of selecting and appraising studies for effectively synthesizing data (PRISMA, 2020). Data extracted included the demographics of the target population and the relationship between grandparent and grandchild, such as custodial versus supplemental. Findings related to the purpose of the study to identify the benefits and challenges associated with grandparenting and relevant implications for practice were extracted for further analysis. Researchers utilized a constant comparative approach to analyze the texts of each article through which common themes and concepts were identified by simultaneously labeling, coding, and analyzing (Taylor & Bogdan, 1998). First, the research team received training regarding thematic synthesis, analysis techniques, and constant comparison strategies. Articles were divided amongst the research team in preparation for synthesis to identify commonly shared themes and concepts. Initially, each researcher read the introduction of their respective article by free line-by-line coding. Afterward, the research team reviewed and organized the free codes into constructive themes according to relevance for the study. The codes and categories were continuously discussed amongst the researchers until a majority consensus was established to omit bias and decrease impulsive categorization. The themes revealed through this process included beneficial factors related to overall wellness, negative factors affecting wellness, grandparent-headed households, grandparents as caretakers, cultural relevance, types of roles, Using an Occupational Therapy Lens to Explore the Role of Grandparenting 13 educational and spiritual resources, increased engagement in grandparenting, and decreased engagement in grandparenting. Researchers also explored the relevancy of data to the profession of occupational therapy. Next, the researchers read the results, findings, discussion, and conclusion section of their respective articles to identify relevant data related to the prior themes. Sentences relevant to the purpose of the study were extracted and categorized based on benefits, challenges, or implications for practice. Once compiled, extracted data was inputted into Chat Generative Pre-trained Transformer (ChatGPT) to identify common themes. ChatGPT is a language model developed by OpenAI designed for conversational purposes (ChatGPT, 2023). Capable of generating replies varying from human-like responses to text prompts, the ChatGPT software was developed on massive amounts of data, which allows the responses to understand context, generate coherent text, and perform a variety of language-related tasks (ChatGPT, 2023). The themes constructed by ChatGPT were reviewed by the research team to confirm the accuracy and relevance of the study. A constant comparison approach was used across ChatGPT-generated data points in order to form categories and concepts. Findings Among the nine articles included in our study, researchers enrolled participants from populations that consisted of African American, Lakota Elders, Asian, White, Hispanic, Native, and Latino. The age range of grandparents across the nine studies was 36-98 years. Three studies provided evidence about grandmothers and their grandchildren; six studies provided evidence about grandmothers, grandfathers, and their grandchildren. Of the nine articles reviewed (Table 2), five researchers studied grandparents who fulfilled the supplemental role; five researchers studied grandparents who fulfilled the custodial role. Using an Occupational Therapy Lens to Explore the Role of Grandparenting 14 Table 2 Articles Included in Analysis Author (Date) D'Astous, et al. (2013) Freeman, et al. (2019) Xie, et al. (2018) Tracy, et al. (2022) Purpose of Study Research Design Sample Demographics Discovering the Qualitative range of Semi-Structured engagement of intergenerational interview relationships in families with a child with Autism Spectrum Disorder (ASD) 14 grandparents How do grandparent caregivers describe their cognitions and behaviors in regards to communication with their grandchildren? Qualitative 21 grandparents (17 female, 4 male) What are Latino grandparents perceptions of and attitudes toward the way children spend their leisure time, and in particular LTPA? Qualitative Analyze online journals written over four weeks by grandmothers raising Qualitative 129 grandmothers Journal prompts and online Ages ranging from 36-76 years Semi-structured interviews Braun and Clarkes 6-step process for thematic analysis Focus group interviews Type of Grandparent Supplementary (8 grandmothers, 6 grandfathers) Age ranges between 56-81 years Caucasian descent in the United States Custodial Age ranges between 4074 years 51% Caucasian, 22% Black, 20% Hispanic, and 3% Asian United States 53 grandparents of 40-70 years Supplementary Grandchildren of 2 12 years old Latino descent Low income within Los Angeles County, United States 21.7% Black, 10.9% Custodial Using an Occupational Therapy Lens to Explore the Role of Grandparenting Stephens (2019) Bangerter & Waldron (2014) Mansson (2016) Dennis & Brewer (2016) grandchildren questionnaires Hispanic, 6.9% Bi/Multiracial 6.9% Asian 0.78% Native American 0.78% United States Examined how African American grandmothers caring for their grandchildren promoted literacy for themselves and the children in their care. Qualitative 8 grandmothers Semi-structured interviewing Age ranges between 46-70 years In what ways does the closeness of GP-GC relationships change throughout the grandchild's adolescence? Qualitative 35 grandparents Semi-structured interviews with retrospective interview technique with constant comparative method Age ranges between 60-82 years What do grandparents perceive as the best part about being grandparents? Qualitative 104 grandparents (84 female, 20 male) The central focus of this research is to gain an understanding of the experience of Lakota elders raising Qualitative 25 grandparents (20 female, 5 male) Interviews Age ranges between 55-98 years Criterion-based and snowball sampling Descriptive-pheno menology Open-ended survey questions Six-step thematic analysis 15 Custodial African American descent within the United States Supplementary Majority caucasian descent in the United States Supplementary Age ranges between 60-91 years Majority caucasian descent and married in the United States American Indian descent Custodial Using an Occupational Therapy Lens to Explore the Role of Grandparenting grandchildren Stephens (2020) The purpose of this study was to understand the methods of informal learning for human capital used by Black grandmothers caring for their grandchildren in rural communities 16 Living in South Dakota Qualitative 10 grandparents Basic interpretive inquiry Age ranges between 44-78 years Semi-instructed interview Custodial African American women, in a rural community within the United States Benefits Associated with Grandparenting Three qualitative themes of positive outcomes between GP-GC relationships can be identified from the provided excerpts across different studies: education for custodial grandparents, communication and pride, and physical and emotional support. These themes collectively highlight the multifaceted roles that grandparents play in the lives of their grandchildren, encompassing education, faith, communication, support, and the nurturing of positive relationships across generations. Education for Custodial Grandparents Within education for custodial grandparents, four subcategories emerged: attachment to social networks and educational development, intergenerational learning and reciprocation, custodial grandparent involvement in Parent-Teacher-Student Associations (PTSA) and educational engagement, and faith literacy development. Custodial grandmothers became attached to social networks within and outside of school. The attachment to social networking systems contributed to resources for assisting Using an Occupational Therapy Lens to Explore the Role of Grandparenting 17 grandchildren in learning and development, reducing high school dropout rates, and providing support for their grandchildren when they were treated unfairly. A vested interest in the educational development of grandchildren was shown. Intergenerational learning and reciprocation of learning were evident between older and younger generations. Informal learning activities led to collaborative activities, group discussions, and expanded social relationships. Learning transferred between generations was found to strengthen the Black family. Custodial grandparent involvement in PTSA and their grandchilds educational development was valued and contributed to intergenerational learning. Participation in PTSA activities provided resources to enable custodial grandmothers to gain skills to guide their grandchildrens learning. Custodial grandmothers were highly motivated to learn about their children's school experiences. Through participation in PTSA activities, the utilization of human capital in the context of informal learning was employed for intergenerational learning due to collaborative efforts between intergenerational learners (grandmothers and grandchildren), and members of a system working together to advance the well-being of the grandchildren. When individuals, like grandmothers taking care of their grandchildren, participate in opportunities to acquire human capital, particularly within a sociocultural setting, they establish connections with networking systems comprising other parents, students, educators, counselors, and principals. These connections facilitate the occurrence of more informal learning opportunities, fostering increased interactions and learning experiences for both the grandmothers and their grandchildren. Black grandmothers were deeply rooted in their religious beliefs and served as guides in imparting spiritual direction to both their children and grandchildren. Faith literacy development of grandchildren was enhanced through participation in activities such as Sunday school, Using an Occupational Therapy Lens to Explore the Role of Grandparenting 18 Vacation Bible School, and Bible study. Grandmothers were found to use the Bible and other religious education materials to enhance their grandchildren's reading skills and contribute to their moral development. This resulted in these children acquiring improved capabilities to conduct themselves effectively when away from home. Communication and Pride Within communication and pride, four subcategories were identified: community leadership and support, communication practices, long-distance relationships and technology, and mutual affection and pride. Community leadership and support are evidenced by care and concern for the broader communities' children and elders providing leadership, guidance, and assistance with food in resource-limited environments. The living Lakota values, including generosity and commitment to family, also support the subcategory of community leadership and support. Communication practices emphasized by grandparents include listening, dialogue, emotional discussions, openness, and allowing questioning. These practices are also supported by structured communication activities for stability and consistency in grandchild upbringing. Communication practices include improved resources, acquired wisdom, and increased emotional maturity, which contribute to refined communication. Long-distance relationships and technology are supported by grandparents who actively engage in relationship maintenance practices for long-distance relationships. Technology, such as texting and social media, helps sustain close relationships over time. Lastly, the subcategory of mutual affection and pride is evidenced by grandparents' enjoyment of mutual affection and shared activities with grandchildren. Pride in grandchildren, children, and their accomplishments is a fundamental aspect of the GP-GC relationship. Using an Occupational Therapy Lens to Explore the Role of Grandparenting 19 Physical and Emotional Support. Latino grandparents who perceived the benefits of physical activity on a grandchilds physical and mental health supported leisure-time physical activity directly and indirectly. Grandparents overall were found to provide emotional support and nurturance for parents and grandchildren. Closeness and contact between parents and grandparents were found to enhance positive relationships. Challenges Associated with Grandparenting Four qualitative themes of challenges associated with GP-GC relationships were identified from the provided excerpts across different studies: challenges with custodial grandparenting, complex stress, struggles in promoting health habits, and decline in closeness during adolescence and long-distance relationships. Challenges with Custodial Grandparenting Custodial grandparents often rely on limited resources when raising their grandchildren. Despite grandparents' motivation to support their grandchildren due to the cultural values of family and caring for future generations, they continue to face many challenges due to the nature of their responsibilities. Grandparents take on the responsibility due to reasons such as substance abuse, neglect, parents seeking employment and educational opportunities, and accidental deaths. Complex Stress Some grandparents face complex, stressful situations related to child trauma, unstable conditions with biological parents, and emotional and behavioral issues in grandchildren. Legal custody conflicts with birth parents and navigating complex family dynamics create stress for grandparents. Behavioral and emotional problems in grandchildren, challenges with the grandchilds parents, financial strain, concerns for the grandchilds future health, worry about Using an Occupational Therapy Lens to Explore the Role of Grandparenting 20 adult children, social isolation, and navigating complex judicial systems are stressful and have a negative influence on the well-being of grandparents. Struggles in Promoting Healthy Habits The struggles in promoting healthy habits are evidenced by grandparents being the role models in promoting grandchildrens leisure-time physical activity. Some grandparents struggle to modify sedentary behaviors through verbal communication. Grandparents also use unhealthy foods as an incentive for physical activity, which may encourage unhealthy eating. Decline in Closeness During Adolescence and Long-Distance Relationships The decline in closeness during adolescence and long-distance relationships is evidenced by the decline attributed to growing independence and engagement with peers and adults. Relational closeness often declines due to life changes, moving away, or the grandparent's limited involvement in family life. Family disruptions, such as conflicts over financial support or drug abuse, were also found to contribute to estrangement. Grandparents described the relationship as "one-sided" with their grandchildren, with their efforts to communicate not being reciprocated, resulting in grandparents longing for deeper connections. Implications for Occupational Therapy Five qualitative themes of possible implications for practice were revealed from the analysis: faith literacy, culture, support, and outreach interventions, grandparents' roles and communication, and training and education. Faith Literacy Within the theme of faith literacy, two subcategories emerged: collaboration for faith literacy-based adult education and intergenerational learning through faith literacy. There is a need to facilitate collaboration among adult educators, researchers, and students of adult Using an Occupational Therapy Lens to Explore the Role of Grandparenting 21 education to establish best practices for grandmothers and older adult learners in informal education programs, using faith literacy as a foundation for diverse teaching and learning opportunities. Implementing faith literacy activities as a significant component in intergenerational learning would enable grandmothers and grandchildren to acquire skills that build on existing competencies, opening doors to further learning opportunities. Culture Within the theme of culture, three subcategories emerged: promoting Latino grandparents involvement, cultural healing approaches, and addressing the unique needs of African-American Grandmothers. Designing interventions to empower Latino grandparents in supporting their grandchildrens leisure-time physical activity will promote Latino grandparents involvement with their grandchildren. Additionally, providing information on the benefits of physical activity, local resources, and the development of intergenerational programs for physical activity will aid in involvement. In approach to cultural healing, recognition of the need for mental health services that incorporate cultural healing approaches will address the unresolved grief and loss within the community. Lastly, investigating and addressing the unique needs of African-American grandmothers caring for grandchildren in rural communities by engaging them in informal learning activities for knowledge development demonstrates the importance of education for both caregivers and children. Support and Outreach Interventions Within support and outreach interventions, three subcategories were identified: outreach of behavioral and mental health support, support services and interventions, and supporting grandparents of children with disabilities. It is important to implement outreach efforts by behavioral and mental health services to provide concrete support and tools for managing family Using an Occupational Therapy Lens to Explore the Role of Grandparenting 22 dynamics in grandfamilies. Grandparents would benefit from the necessary support to address emotional, behavioral, and developmental issues in children. Also, interventions to assess and alleviate stresses related to transitions and parental instability will support custodial grandparents in raising grandchildren, including navigating social and economic challenges. It is important to support grandparents of children with disabilities by providing accurate information to grandparents regarding their grandchild's disability, enhancing understanding and support. Lastly, fostering inclusion in family activities and expressing appreciation will strengthen intergenerational relationships within families with a child with a disability. Grandparents Roles and Communication Within the theme of grandparents roles and communication, three subcategories emerged: acknowledging grandparents contribution, communication practices in grandfamilies, and recognizing grandparent caregivers roles. The efforts of grandparents should be recognized as a vital service to the community. It is important to acknowledge grandparents' contribution to maintaining family stability and providing financial and emotional support to their grandchildren. By recognizing grandparents roles, we gain insights into aging caregivers' reflections on overall family communication. This reflection will allow for a better understanding of grandparents' roles within grandfamilies, which is required to develop communication strategies and practices that align with the second-chance parenting phenomenon. Lastly, it is important to recognize grandparent caregivers multifaceted role as parents, teachers, and heads of households. Overall, these efforts will support adult educators in understanding and addressing the responsibilities placed on grandparent caregivers while also incorporating culturally relevant instruction and scaffolding strategies. Training and Education Using an Occupational Therapy Lens to Explore the Role of Grandparenting 23 Within the theme of training and education, four subcategories were identified: interprofessional education and collaboration, strengthening PTSA and collaborative approaches for custodial grandparents, family-centric approaches in health care, and behavioral parent training for grandfamilies. There is an increasing need for interprofessional education and collaboration, particularly as more grandmothers assume the role of primary caretakers, emphasizing the importance of interdisciplinary approaches to address complex family needs. For example, PTSA and collaborative approaches can be strengthened within schools by broadening the membership to include various professionals beyond parents and teachers. It is also necessary to promote collaborative approaches across professions to effectively meet the complex needs of families with custodial grandparents. Family-centric approaches in health care need to approach grandparents from a family context, providing population-specific training on conducting family assessments for grandmothers raising grandchildren. It is important to address various familial relationships and offer support for managing these relationships. This can be done by developing behavioral parent training for custodial grandfamilies and programs to teach grandparents and the grandchild's parents co-parenting skills. Interventions for grandparents and grandfamilies need to be tailored to the needs of different generations within grandfamilies, such as considering diverse age groups. Discussion The purpose of this study was to explore the literature to determine the benefits and challenges associated with grandparenting in various cultures and explore implications for the practice of occupational therapy. Researchers found that grandparents engaging in meaningful custodial or supplementary roles can lead to considerably beneficial outcomes for not only the grandparents but also the grandchildren. Using an Occupational Therapy Lens to Explore the Role of Grandparenting 24 Our findings show that custodial grandmothers are motivated to learn about their grandchildrens school experiences and education through their involvement in PTSA. This included actively participating in PTSA activities to acquire skills to guide their grandchildren's learning. Our research noted the value of PTSA and how its social aspects can promote intergenerational learning within GP-GC relationships. Intergenerational learning and reciprocation between older and younger generations also contribute to positive outcomes in our findings (Stephens, 2020). This encompasses informal learning activities, which lead to collaborative activities, group discussions, and expanded social relationships (Stephens, 2020). Alongside formal and informal learning, OT practitioners are equipped to provide educational programs necessary to facilitate interpersonal and social skills (Marton & Stewart, 2020). For instance, OT practitioners can provide supplementary services for grandchildren eligible for Individualized Education Plans (IEPs) developed by grandfamilies and professionals within the school services (Generations United, 2023). Furthermore, grandfamilies can seek out the assistance or skilled services of OT practitioners when needing extra classroom support necessary for optimal learning (Marton & Stewart, 2020). Specifically, school-based OT practitioners can prompt physical and mental wellness by addressing the physical, cognitive, psychosocial, and sensory components of the grandchilds performance (American Occupational Therapy Association, 2017). By doing so, OT practitioners will not only promote the overall well-being of the grandchild through client-centered care but will also provide the necessary educational concepts through grandfamily-centered care necessary for grandparents to maintain such support outside of the PTSA (Marton & Stewart, 2020). In addition to providing support for grandchildren, our findings show that grandparents also provide emotional support and nurturance for parents (DAstous et al., 2013). It is shown Using an Occupational Therapy Lens to Explore the Role of Grandparenting 25 that closeness and contact between parents and grandparents enhance positive relationships (DAstous et al., 2013). Very few research studies have focused on the coping strategies necessary to address emotional barriers and support within the grandfamily dynamic. However, the few studies that have been conducted duly noted the very few resources available to support grandfamilies (Wood et al., 2016). A successfully effective OT practitioner should not only assess and identify the emotional and supportive needs of grandfamilies but also identify the appropriate resources the grandfamilies require for prolonged maintenance (Wood et al., 2016). For instance, intergenerational programming within the context of OT can effectively provide support through meaningful participation in co-occupations, including shared physical, emotional, and volitional engagement (Harmon et al., 2022). Whether through meaningful intergenerational interventions or educational programs, successful OT practitioners should assess, address, and provide grandfamilies with the appropriate tools and resources to facilitate or maintain support and nurturance (American Occupational Therapy Association, 2020). We found that brimming with mutual affection and engaged in shared activities, grandparents revel in the pride derived from their grandchildren, children, and their own accomplishments, making it a fundamental and cherished aspect of the GP-GC relationship (Mansson, 2016). Moore and Miller (2007) paralleled these findings by suggesting that African American grandparents facing diverse challenges while raising their grandchildren gain a substantial amount of psychological rewards, which heightens their gratification, sense of usefulness, and growing pride. Henderson et al. (2017) revealed that among Native People residing in a rural Arctic climate, pride was a significant factor contributing to the joy experienced by grandparents in the upbringing of their grandchildren. Therefore, evidence supports that overcoming the challenges and having pride in their grandparenting role has the Using an Occupational Therapy Lens to Explore the Role of Grandparenting 26 potential to not only enrich the GP-GC relationship but also improve the overall well-being of the grandparent. Recognizing the advantages of physical activity for the well-being of their grandchildren, Latino grandparents actively endorse and provide support for their leisure-time physical pursuits, fostering both physical and mental health benefits directly and indirectly (Xie et al., 2018). On the contrary to fostering healthy habits, Pankhurst et al. (2019) found in their survey of supplementary grandparents in Southern Australia that discretionary treats are a valuable part of the GP-GC relationship that is strategically used by grandparents to identify themselves as uniquely different from other family members. Williams et al. (2021) and Moestue & Huttly (2008) concluded that the grandparents level of education directly correlates to the level of the grandchilds health. Although the physical activities and rewards that grandparents choose to share with their grandchildren have an impact on the grandchilds health, ultimately, the higher the level of education of the grandparent, the higher the level of health the grandchild is likely to have. Providing support and sharing time were important benefits to the role of grandparenting. Stephens (2019) described grandmothers' pivotal role in supporting grandchildren during challenging times through faith literacy development and attachment to social networks and educational development. Additionally, shared time in activities such as faith literacy, Sunday school, and Bible study, were found to also enhance reading skills and moral development in grandchildren (Stephens, 2020). Attachment to networking systems contributed to resources that assisted grandchildren learning in development reducing overall high school dropout rates (Stephens, 2019). Leitao et al. (2023) added that OT practitioners can facilitate grandparents engaging in custodial or supplemental roles by directly supporting the use of spirituality Using an Occupational Therapy Lens to Explore the Role of Grandparenting 27 necessary for further holistic support of either client-centered or grandfamily-centered care. Alongside values and beliefs, spirituality is listed as an important client factor in the Occupational Therapy Practice Framework (American Occupational Therapy Association, 2020). Thus, OT practitioners should consider spirituality as an essential aspect of practice as it plays a significant role in influencing not only an individuals motivation, but also their overall well-being, health, and engagement in meaningful activities (Leitao et al., 2023). An important and positive aspect of the relationship between grandparents and grandchildren is communication. Communication practices emphasized by grandparents include listening, dialogue, emotional discussions, openness, and allowing questioning (Freeman et al., 2019). Structured communicated activities should be encouraged to provide stability and consistency in a grandchild's upbringing (Freeman et al., 2019). In addition, improved resources, acquired wisdom, and increased emotional maturity positively contribute to more refined communication between grandparents and grandchildren (Freeman et al., 2019). Examining communication practices among grandparent caregivers, Dennis and Brewer (2016) focused on elders, particularly women, showcasing their dedication to caring for the community's grandchildren. Despite resource limitations, these elders provide leadership, guidance, and assistance, embodying Lakota values within a challenging economic context. Freeman's (2019) study reinforced the importance of meaningful dialogue and structured communication within grandfamilies. Our study notes positive behavioral adjustments among grandchildren, attributing these improvements to enhanced resources and emotional maturity resulting from effective communication strategies. When considering OT practices and the facilitation of meaningful GP-GC communication, OT practitioners can be valuable agents of resources by providing tailored interventions, education, and support necessary to meet the needs of both the Using an Occupational Therapy Lens to Explore the Role of Grandparenting 28 grandparents and grandchildren (Romsdal & Wavra, 2021). An assessment of determining the exact need should be developed to provide the necessary resources needed to produce and maintain positive and meaningful communication. Specifically, OT practitioners are equipped to facilitate social skills training sessions for either grandparents or grandchildren (American Occupational Therapy Association, 2020). Lakota elders epitomize significant leadership and dedication to the overall well-being of their community, especially the children, by providing guidance and crucial food support within environments with meager resources (Dennis & Brewer, 2016). Amidst limited resources, the elders embody the enduring values of the Lakota people, marked by generosity and an unwavering commitment to family, as highlighted by Dennis and Brewer in 2016. Similarly, Lazaro et al. (2023) uncovered that a significant number of grandfathers in Southern Malawi are integral in the support, development, and transmission of knowledge and values to their orphaned grandchildren whom they have adopted and unconventionally raised due to their parents death. In their investigation of the social identity of grandparents within the United States, Neikrug (2000) proposed that grandparents who are deeply engaged and actively involved can exert a profound influence in mentoring younger individuals with disabilities. Taking on the roles within their families and community allows grandparents to have a continued influence on the culture and future of their community. In the realm of intergenerational relationships, the role of grandparents in the upbringing and support of their grandchildren is a multifaceted and dynamic one. Our findings show that despite facing socio-economic challenges, elders are motivated by cultural values centered on family and their commitment to future generations, prompting them to take on the responsibility of raising their grandchildren (Dennis and Brewer, 2016). This altruistic commitment becomes Using an Occupational Therapy Lens to Explore the Role of Grandparenting 29 even more crucial in situations where substance abuse, neglect, parental pursuit of employment and education, or accidental deaths lead grandparents to assume caregiving roles (Dennis and Brewer, 2016). Peterson (2018) supports grandparents experiencing emotions of worry for several reasons, including lack of caregiver options, the possibility of a child being placed in government systems, or if the child has a sudden health crisis. Despite raising grandchildren in a context of limited resources, grandparents are motivated to support their grandchildren due to the cultural values of family and caring for future generations (Dennis & Brewer, 2016). Peterson (2018) adds that grandparents also choose themselves over other relatives due to age, familial and career responsibilities, and overall inability to provide care. As grandparents raise a grandchild, resilience and a positive perspective overcome the challenges and stressors they experience (Hayslip et al., 2019). Expanding on this, the research completed by Freeman et al. (2019) looked into the intricate dynamics within grandfamilies, revealing a prevalence of child trauma stemming from unstable conditions during the time grandchildren spent with their birth parents. Families can often face significant stress due to common emotional and behavioral issues such as depression, anxiety, attachment disorders, and attention-deficit/hyperactivity disorder (Freeman et al., 2019; DAstous et al., 2013; Tracy et al., 2022). In previous research done by Doley et al. (2015), it was found that 23 percent of custodial grandparents reported their grandchild having high levels of emotional problems and 29 percent with hyperactivity. Our findings show that stressors for grandparents include behavioral and emotional problems in grandchildren, challenges with the grandchild's parents, financial strain, concerns for the future health of the grandchild, social isolation, and navigating complex judicial systems (Freeman et al., 2019; DAstous et al., 2013; Tracy et al., 2022). Outside research by Hayslip et al. (2019), similarly states that grandparents' Using an Occupational Therapy Lens to Explore the Role of Grandparenting 30 stressors such as being poor, minority status, or problematic family relationships also cause distress and disadvantages. Our study found that grandparents experience conflict when navigating family dynamics with the birth parents regarding the custody of the grandchild in relation. Other difficult family dynamics can include negotiating troubling parental behaviors that impact their relationships with both the parent and the grandchild, adding further layers to their caregiving responsibilities (Tracy et al., 2022). Xies et al. (2018) findings contribute to the narrative by exploring how grandparents, through role modeling, attempt to promote their grandchildren's leisure-time physical activity. Research by Bell et al. (2022) found that custodial grandmothers did so by limiting sedentary activity, including their grandchild in healthy lifestyle activities, and building a positive relationship with food. Our findings show that custodial grandparents face challenges in modifying sedentary behaviors through verbal communication, and some grandparents resort to using unhealthy food as incentives, raising concerns about potential impacts on children's eating habits. Bell et al. (2022) also note that despite the grandmother's motivation to promote healthy lifestyles, they could not role model engagement in physical activities. Bangerter & Waldrons (2014) investigation shifts the focus to changes in relational closeness with grandparents and grandchildren, noting approximately one-third of long-distance grandparents experience this during adolescence. Within our study, factors such as the child's growing independence, engagement with a broader social network, and life changes experienced by both parties were found to contribute to this decline. Family disruptions, including conflicts over financial support or drug abuse, were found to further strain the relationship, leading to estrangement. According to Charenkova and Gevorgianiene (2018) relocated grandparents, such as when grandparents transition to a nursing home, led to significant deterioration in Using an Occupational Therapy Lens to Explore the Role of Grandparenting 31 relationships, emotional closeness, and overall satisfaction. At times, the relationship is described by grandparents as "one-sided," with efforts to communicate not reciprocated by adolescent grandchildren (Bangerter & Waldron, 2014). Duflos (2022) supports our findings by stating the key factors that predict the closeness of a GP-GC relationship include age, physical and mental health, frequency of contact, educational level, and overall encouragement from parents. Implications for Practice For best practice and client-centered care, OT practitioners need to acknowledge the diverse responsibilities of grandparent caregivers as potentially including the roles of parent, teacher, and household head because individuals who encompass these roles are more adept at providing support through both meaningful assistance (Tracy et al., 2022). Our study indicates such acknowledgment from facilitative agents including, but not limited to, OT practitioners who provide strategically meaningful approaches that can create an overall positively beneficial impact upon both the grandparents and grandchildren (Stephens, 2019). Hayslip et al. (2019) support how increased attention to the complexity of the family structure and stressors within a grandfamily will help practitioners understand the challenges of raising a grandchild and influence them to bring in resources to support them. Approaching grandparent caregivers from a family contextual viewpoint, OT practitioners should consider the relationships grandparents have within their family. By having a deeper understanding of such contextual factors, OT practitioners will have an opportunity to address any barriers or challenges with increased effectiveness (Generations United, 2023). With the consideration of meaningful interventions, OT practitioners are equipped to provide skilled services and resources for not only grandparents Using an Occupational Therapy Lens to Explore the Role of Grandparenting 32 but also grandchildren; thus, highlighting the importance of additional research to understand the diverse needs of grandfamilies across different generations (Tracy et al., 2022). In addition, grandparents raising grandchildren necessitate mental health outreach, encompassing concrete support for managing family dynamics and access to essential respite care and support groups. Within recognition of their pivotal role in stabilizing families and communities, OT practitioners should address unresolved emotional issues through culturally appropriate interventions addressing unresolved grief and loss within the community and exploring traditional practices and innovative methods for community healing (Dennis & Brewer, 2016). Xu et al. (2022) note that custodial grandparents often face barriers when finding resources and services for their grandchildren, including mental health services. Lack of resources was found to reduce the overall quality of life in grandchildren, resulting in increased risk for future adversities (Xu et al., 2022). By understanding the caregiving roles of grandparents, OT practitioners can develop new resources to support the needs of clients, including older adults (grandparents) and children (grandchildren). Research done by Fox et al. (2022) supports that strength-based interventions will aid in grandparent self-efficacy and social support, ultimately increasing grandfamily resilience and outcomes. This can include implementing behavioral and mental health services outreach efforts to provide concrete support and tools for managing family dynamics within grandfamilies. Hayslip et al. (2019) outlined the need to continue understanding the various cultural differences among grandfamilies as there is limited research and resources to support them. Cox (2018) specifically advocated for the role of policy as a support for grandparent-headed households, stating that policy plays a significant role in the types of support and resources provided, ultimately contributing to some grandparents' reluctance to find resources. OT Using an Occupational Therapy Lens to Explore the Role of Grandparenting 33 practitioners can use skills as advocates when recognizing and acknowledging diverse populations and their cultures. Specific cultural implications of recognizing Latino grandparents include designing interventions to empower in support their grandchildren's leisure-time physical activity (Xie et al., 2018). Also, providing current information on local resources and benefits for physical activity and developing new intergenerational programs to better support Latino grandparents' involvement (Xie et al., 2018). According to Shovali et al. (2019) within Latino culture, grandparents are highly respected and an integral part of the family system. As summarized by Cox (2018), culture guides family systems, relationships, and child-raising practices. As suggested by our findings, it is important to support cultural values when providing necessary resources and consider family contexts when advocating for the role of policy in custodial grandparents or understanding the impact within family dynamics (Stephens, 2020; Cox, 2018). Our findings highlight the importance of faith literacy within intergenerational learning, collaboration, and learning opportunities for grandparents with their grandchildren. Specifically, we found that implementing faith literacy activities is a significant component in intergenerational learning, enabling grandmothers and children to acquire skills that build on existing competencies, which may open doors to further learning opportunities (Stephens, 2020). Allana et al. (2017) found that grandparents struggled to maintain their faith practices on top of their day-to-day responsibilities. Despite the noted difficulties, grandparents and educators note the need to introduce spirituality earlier in a grandchild's life (Allana et al., 2017). A need is recognized to strengthen PTSA within schools by broadening the membership to include various professionals beyond parents and teachers. OT practitioners have the skills to provide diverse support, such as environmental modifications, behavioral strategies, and Using an Occupational Therapy Lens to Explore the Role of Grandparenting 34 educational guidance for teachers, grandparents, and grandchildren by advocating for necessary accommodations through IEPs (American Occupational Therapy Association, 2017). In addition, promoting collaborative approaches across professions to effectively meet the complex needs of families with grandmothers as primary caretakers (Stephens, 2020). Shovali et al. (2019) suggested that an increase in grandparent confidence through community resources aided in higher academic performance in their grandchildren. Xu et al. (2022) found insufficient school support and accessible resources for custodial grandchildren, overall impacting their academic success. School systems can aid in establishing supportive services, such as IEPs, to augment grandparents' efforts in raising grandchildren in order to promote increased educational engagement. OT practitioners can aid this process by developing interventions to assess and alleviate stresses related to transitions and parental instability. OT practitioners should engage in collaborative approaches alongside not only custodial grandparents and educators but also with additional facilitative agents involved in supportive services, such as behavioral therapists or speech-language pathologists. Additionally, IEPs developed through a collaborative approach by both involved family members and broader professionals have been noted to have increased effectiveness (Curro et al., 2022). By identifying, supporting, and advocating for the specific needs of the grandchild, both the grandparents and PTSA will have the effective ability to meet the complex needs of the collective family as a whole. In conclusion, there are significant motivations, challenges, and varied dynamics within the GP-GC relationship, emphasizing the need for a nuanced understanding of these relationships and the factors that shape them. Our findings highlight the complex dynamics and challenges faced by grandparents in various caregiving situations, shedding light on the motivations, stressors, and difficulties encountered in raising and maintaining relationships with their Using an Occupational Therapy Lens to Explore the Role of Grandparenting 35 grandchildren. Outside research aids in the understanding of continued research and implications for practice amongst OT practitioners, educators, and other healthcare professionals. This knowledge is invaluable for OT practitioners, offering insights that can inform evidence-based practices and enhance the effectiveness of interventions. By integrating our understandings into the framework of occupational therapy, practitioners are better equipped to navigate the intricacies of family dynamics, providing tailored and client-centered support that resonates with the unique experiences of grandparents (custodial and supplemental) and their grandchildren. Using an Occupational Therapy Lens to Explore the Role of Grandparenting 36 References Allana, A. R., Tennant , G., & Petrucka, P. (2017). Embedding spirituality in young children: An inter-generational challenge. International Journal of Childrens Spirituality, 22(3-4), 239-259. https://doi.org/10.1080/1364436X.2017.1357537. American Occupational Therapy Association. (2017). What is the role of the school-based Occupational therapy practitioner? The American Occupational Therapy Association. https://www.aota.org/~/media/Corporate/Files/Practice/Children/School-Administrator-B rochure.pdf Baker, L. A., Silverstein, M., & Putney, N. M. (2008). 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... Nurturing Nuggets: Trauma-Informed, Sensory-Based Education to Help Children Grow through Connection, Compassion and Community Megan Yingling May 1, 2023 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Taylor Gurley, MS, OTR, OTD, CEIM Abstract Safe Families for Children (SFFC) is a national, volunteer-based organization that provides out-of-home care for children whose families are in crisis. By doing so, they are working to keep the children safe and the family together. Because SFFC provides out-of-home care to families in crisis, they often encounter children who have experienced trauma and adverse childhood experiences (ACEs) which sometimes manifests as challenging behaviors in the children. My doctoral capstone project sought to educate on trauma-informed care and sensory processing styles to help the volunteers in SFFC better understand the behaviors of the children that they serve. I led a virtual training session for volunteers, and created video and flyer resources on trauma-informed care and sensory styles. Participants reported an increase in knowledge and preparedness to educate others after the training suggesting that it was effective. Introduction Safe Families for Children (SFFC) is a national organization that hosts children and creates a support system for families in crisis (How Safe Families Works, 2022). Their mission is to keep children safe and families together. Within SFFC, there is unique terminology to identify the different entities involved in creating an extended support system for the family in need. Partnering parent(s) are the families in need or in crisis. Host families temporarily take care of the child(ren) on a volunteer basis. Family coaches are the key connection piece between partnering parents and the host families, working to build relationships and facilitate communication. The volunteer family coaches visit the host family's house and provide support and guidance. They also support the partnering parent in building skills to work on whatever is most important to the partnering parent. Family friends help the partnering parent in ways outside of hosting the children overnight, and resource friends provide tangible items such as beds, clothes, or diapers to help meet the needs of the host family and partnering parent. When discussing common child challenges with the staff and family coaches, it was mentioned that host families oftentimes dont fully understand trauma responses seen in some children within SFFC, and they often struggle with resulting behaviors. Family coaches also mentioned partnering parents struggle with some of their own childs behaviors. To address these challenges, my project consisted of an hour-long training as well as several educational videos and handouts for family coaches. The focus was trauma-informed care and a sensory-approach to behaviors. My hope was that by educating family coaches, I would empower them to educate host families and partnering parents as they see fit. Passing on this education would help all entities better understand the children involved in SFFC and their behaviors, equipping caregivers to provide the best possible care for the children. Background The population primarily served by SFFC is children from birth up to 18 years of age. There is a sociodemographic divide between the partnering parents and the host families which is currently being addressed by SFFC at a national level. The most common sociodemographic seen with the partnering parents are single, Black, female, non-high school graduate, and living at or near poverty level. Meanwhile, the demographics of a typical host family are married, white, higher education, and middle to upper income. This difference is important to note because it directly impacts the relationships SFFC tries to build through an extended support network. To assess what education would be most helpful for SFFC, I talked with both the staff members and family coaches. I asked what they felt they understood about child development, difficult behaviors, and trauma-informed care, as well as if there was any other topic about which they wish they knew more. Responses varied based on the individuals backgrounds, but they felt that short videos covering trauma and resulting behaviors, sensory needs, and trust-based relational intervention would help them. Family coaches mentioned that they would want to share the videos with host families and partnering parents as they saw fit. Therefore, my project background focused on defining the need for these topics. Research exists to define out-of-home care (OOHC) as not only formal foster care, but also informal foster care due to parental inability to provide adequate care at the time, such as the care provided in SFFC (Galvin et al., 2019; Turney & Wildeman, 2017). Children in OOHC have higher rates of mental health disorders, behavioral and emotional problems, and overall health needs, but early intervention is predicted to lead to an overall decrease in those same categories (Galvin et al., 2019; Leloux-Opmeer et al., 2016; Tarren-Sweeney, 2008). My capstone project sought to empower parents to recognize when their child needs early intervention services by educating parents and coaches on typical child development. In addition to early intervention, there is substantial evidence that providing various protective environmental factors to children in OOHC can reduce the effects of their higher adverse childhood experience (ACE) scores and help prevent developmental delays (Gatwiri et al., 2019; Hambrick et al., 2018; Sciaraffa, 2018; Sege & Brown, 2017; von Sneidern, 2017; Yamaoka & Bard, 2018). Children in SFFC have not always been exposed to big traumas in their lives, however, even by being separated from their family for a short period of time, they are exposed to ACEs (Finkelhor et al., 2013). Hambrick et al. (2018) examined brain scans of children that showed a correlation between early trauma exposure and developmental delays. The researchers found that the relational health currently being provided to a child, not the early trauma exposure, was the strongest predictor of developmental outcomes. Hambrick et al. (2018) defined relational health as feeling connected to others such as caregivers, family members, mentors, and others in the community. Another study conducted by von Sneidern et al. (2017) looked at the association between preschoolers ACE scores and developmental scores from a standardized assessment and found no association between ACE scores and developmental delay. Importantly, researchers noted the sociocultural context of the town in which they conducted their study as a community with extensive support networks of aunts/uncles, grandparents, friends, and teachers (von Sneidern et al., 2017). Therefore, they made the claim that the protective childhood development factors, including this extensive social support, were able to encourage healthy development despite ACEs (von Sneidern et al., 2017). SFFC is set up to foster relationships and build community around a family in crisis to keep the children safe and the families together. Therefore, my project will seek to foster these protective factors that already exist within SFFC, incorporate new ones, and educate families on the benefits of all protective factors. Sciaraffa et al. (2018) discussed three categories of protective factors that can help a childs positive adaptation in their environment: (1) helping children build their capacities, (2) helping them develop healthy attachments and a sense of belonging, and (3) building a protective community. Other articles focus on similar factors such as engaging in nurturing, playing, and learning in a safe and stable environment (Sege & Browne, 2017) while others list specifics such as reading together, having a family meal, and storytelling (Yamaoka & Bard, 2018). These protective factors also fall under the realm of trauma-informed care as discussed in the meta-analysis of Bailey et al. (2019). I believed that by including these trauma-informed protective factors in my educational resources, children in Safe Families could have less mental health disorders, behavioral problems, and overall health needs because of ACEs to which they may have been exposed (Risk and Protective Factors, 2021). Finally, while working to incorporate these protective environmental factors to promote healthy development of children in SFFC, I also brought awareness to cultural considerations. Kokaliari et al. (2019) addresses the racial disparities in the foster care system from the perspective of African American parents involved in the child welfare system. As there is a racial disparity between the host families and partnering parents as discussed above, I felt that this was crucial to consider. Kokaliari et al. (2019) found themes mentioned by the 21 African American participants living in poverty that included a profound lack of trust, overwhelming trauma, and a sense of social isolation. Maintaining cultural awareness in my project helped family coaches facilitate trust-building between the host family and the partnering parent, hopefully alleviating some lack of trust and social isolation. Theoretical Background The Person-Environment Occupational Performance (PEOP) Model with Trust-Based Relational Intervention (TBRI) influences guided my clinical reasoning throughout my capstone project development. My focus was on the children of SFFC and fostering their development while considering some of their behaviors. Observing these children from a PEOP perspective allowed me to consider not only the children themselves, but also their environment, occupations, and performance capacities. The most important part of my project was the central overlap seen in Figure 1 - the occupational performance and participation of the children in their desired occupations. The concepts of TBRI are key to my project as well as they guided my approach to educating the SFFC extended support network. Compassionate understanding is crucial to creating a healthy environment for the vulnerable children and their families to grow in the way that is needed. The goal of TBRI is to help children feel a sense of safety and connection with their caregivers and within their environment, both concepts highlighted in the performance bubble of Figure 1. That felt safety and connection in turn manifest as self-regulation and appropriate behaviors in children, concepts seen in the core of Figure 1. Project Design My main goals in designing my Nurturing Nuggets capstone project were (1) to make it accessible to the participants, and (2) to ensure its sustainability. Since the family coaches provide mentorship and education to both host families and partnering parents, I delivered my educational materials to the family coaches. I asked them what format of resources they felt would be easiest for them to work with and decided that short videos and handouts located in a shared Google folder were the most accessible and sustainable. The short videos covered a variety of topics including: (1) different sensory processing styles, (2) behaviors associated with sensory processing styles, (3) managing behaviors from a sensory perspective, (4) caregiver mental health support, (5) trauma-informed care, and (6) trauma and adverse childhood experiences. I also created handouts that reflected the content in the videos for any individuals who preferred reading rather than watching a video. In addition to the handouts and videos, I led a 45-minute educational session for the family coaches over Zoom focused on trauma-informed care and challenging behaviors. The educational session was intended to allow for more direct engagement with the topics, introduce my resources, and give time for discussion. I created a Google forms pre- and post-survey to use as my outcome measure that assessed learning and preparedness to educate host families/partnering parents before and after the Zoom educational session. See Appendix A for a weekly planning guide of my doctoral capstone project and experience. Project Implementation I emailed the family coaches a short description of my Nurturing Nuggets programming as well as a Zoom link to attend. Three family coaches attended the one-hour Zoom programming. I recorded the session for any family coaches who could not attend. The educational content consisted of a short description of occupational therapy, trauma-informed care, and a sensory approach to challenging behaviors. I showed them the shared Google folder that I had created containing the resource videos I had already made and explained the corresponding handouts I planned to make over the following weeks. I asked for feedback on those videos, and ideas of other resources that might continue to help them. I also showed them the sensory handouts from the previous capstone student that I had included in the same folder. I wanted to give the other seven family coaches the same opportunity for discussion and questions, so I decided to offer a second date and time for the same Nurturing Nuggets programming. Four additional family coaches attended the second session. Following the second session, I sent out an email with the recording of the programming for family coaches who had not yet attended a Zoom session, and the link to the shared Google folder with the resources I had created. I also encouraged family coaches to contact me over the following weeks with more needs for videos, handouts, or brainstorming for individual children. Project Outcomes In order to evaluate the effectiveness of my programming, I used pre- and post-surveys before and after the Zoom sessions. I was not able to find an existing outcome measure that would measure the participants knowledge on trauma-informed care and sensory processing styles, as well as their preparedness in educating others on those same topics. To capture the intended data, I chose to construct my own surveys with a 5-point Likert scale. Due to time constraints, I was not able to test for reliability or validity of these measures. I had seven total participants (n=7), and I calculated the average scores of each pre- and post-survey question to gauge if there was an increase in their knowledge and preparedness to educate. The Likert scale used ranged from 1, not at all, to 5, extremely. The averages for each question are listed in Table 1. Participants reported an overall increase in knowledge and preparedness following the training. This improvement was reflected in the participants comments during the training sessions seen in Table 2. The feedback I received from participants during and after the trainings, combined with increase in scores, suggests that my training was effective in educating on trauma-informed care and sensory styles in an accessible way. Summary Safe Families is an organization that helps families in times of crisis by temporarily hosting or caring for the children. With only two staff members in the Central Indiana chapter, it is a volunteer-based organization. Family coaches are the most experienced volunteers who are tasked with education, mentorship, and walking alongside both host families and partnering parents. When I performed a need assessment by talking to family coaches, I learned that they would benefit from educational programming and resources that they could share on traumainformed care and challenging behaviors. Research into these topics showed that providing various protective environmental factors to children in out-of-home care can reduce the effects of their higher adverse childhood experience (ACE) scores (Gatwiri et al., 2019; Hambrick et al., 2018; Sciaraffa, 2018; Sege & Brown, 2017; von Sneidern, 2017; Yamaoka & Bard, 2018). Protective factors included an extensive support network (von Sneidern, 2017), a safe and stable environment (Sege & Brown, 2017), and helping them develop healthy attachments and a sense of belonging (Sciaraffa, 2018). I chose to incorporate these factors into my project by leading a family coach training session I called Nurturing Nuggets: A trauma-informed, sensory-based approach to behaviors and development and creating video and handout resources for the family coaches to share. The videos and handouts included the following topics: (1) different sensory processing styles, (2) behaviors associated with sensory processing styles, (3) managing behaviors from a sensory perspective, (4) caregiver mental health support, (5) trauma-informed care, and (6) trauma and adverse childhood experiences. I used a pre- and post-test survey to measure family coaches knowledge and preparedness before and after the training session. An overall increase was seen in scores suggesting that my training was effective in educating on trauma-informed care and sensory styles in an accessible way. Conclusions During this capstone experience, I learned how important it is to advocate for all that I can do as an occupational therapist. Virginia Stoffel, a past American Occupational Therapy Association (AOTA) president coined the idea of what matters to you? instead of whats the matter with you? During this capstone, I realized that defining occupational therapy (OT) that way opens a lot of doors for us to help individuals. I also learned that it is so important to recognize what is within our scope of practice and when to make referrals for additional help (i.e. mental health, housing insecurity, etc.). As a result of my capstone project, the staff and volunteers of Safe Families learned about sensory styles and are now quick to identify different childrens sensory needs. The volunteers and staff now have additional videos and flyers to use as additional training in trauma-informed care for their family coaches. Family coaches are now equipped with short videos and handouts that they can easily text or email to host families or partnering parents who are struggling with behaviors or needing more information on trauma-informed care as well. I made sure these resources were accessible to all volunteers, using general language that is easily understood, and avoiding any specific occupational therapy terminology. Future implications of my capstone project include occupational therapists (OTs) doing contracted work and continued advocacy with community organizations. OTs may play an especially unique role in community organizations helping children who might show difficult behaviors or different sensory processing styles due to a history of trauma. It is also important to continue to advocate for different roles OT could play within an organization to help them see the benefit of potentially contracting or hiring an occupational therapist. References Bailey, C., Klas, A., Cox, R., Bergmeier, H., Avery, J., & Skouteris, H. (2019). Systematic review of organisation-wide, trauma-informed care models in out-of-home care (OoHC) settings. Health & social care in the community, 27(3), e10e22. https://doi.org/10.1111/hsc.12621 Finkelhor, D., Shattuck, A., Turner, H., Hamby, S. (2013). Improving the Adverse Childhood Experiences Study Scale. JAMA Pediatrics, 167(1), 7075. https://doi.org/10.1001/jamapediatrics.2013.420 Galvin, E., O'Donnell, R., Skouteris, H., Halfpenny, N., & Mousa, A. (2019). Interventions and practice models for improving health and psychosocial outcomes of children and young people in out-of-home care: protocol for a systematic review. BMJ Open, 9:e031362, https://doi.org/10.1136/bmjopen-2019-031362 Gatwiri, K., Mcpherson, L., Mcnamara, N., Mitchell, J., & Tucci, J. (2019). From adversity to stability to integration: How one Australian program is making a difference in therapeutic foster care. Journal of Child & Adolescent Trauma, 12, 387398. https://doi.org/10.1007/s40653-018-0236-6 Hambrick, E. P., Brawner, T. W., Perry, B. D., Brandt, K., Hofmeister, C., & Collins, J. O. (2018). Beyond the ACE score: Examining relationships between timing of developmental adversity, relational health and developmental outcomes in children. Archives of Psychiatric Nursing 33, 238247. https://doi.org/10.1016/j.apnu.2018.11.001 Leloux-Opmeer, H., Kuiper, C., Swaab, H., & Scholte, E. (2016). Characteristics of Children in Foster Care, Family-Style Group Care, and Residential Care: A Scoping Review. Journal of child and family studies, 25, 23572371. https://doi.org/10.1007/s10826-016-0418-5 How safe families works. Safe Families for Children. (2022, February 27). Retrieved March 11, 2022, from https://safe-families.org/about/how-safe-families-works/ Kokaliari, E. D., Roy, A. W., & Taylor, J. (2019). African American perspectives on racial disparities in child removals. Child Abuse & Neglect, 90, 139-148. https://doi.org/10.1016/j.chiabu.2018.12.023 Risk and Protective Factors. (2021). Centers for Disease Control and Prevention. https://www.cdc.gov/violenceprevention/aces/riskprotectivefactors.html Sciaraffa, M. A., Zeanah, P. D., Zeanah, C. H. (2018). Understanding and promoting resilience in the context of adverse childhood experiences. Early Childhood Educ J, 46, 343353. https://doi.org/10.1007/s10643-017-0869-3 Sege, R. D. & Browne, C. H. (2017). Responding to ACEs with HOPE: Health outcomes from positive experiences. Academic Pediatrics 17(7), 79-85. Tarren-Sweeney M. (2008). The mental health of children in out-of-home care. Current opinion in psychiatry, 21(4), 345349. https://doi.org/10.1097/YCO.0b013e32830321fa Turney, K. & Wildeman, C. (2017). Adverse childhood experiences among children placed in and adopted from foster care: Evidence from a nationally representative survey. Child Abuse & Neglect, 64, 117-129. http://dx.doi.org/10.1016/j.chiabu.2016.12.009 von Sneidern, E., Cabrera, K. P., Galeano, N., Plaza, M., & Barrios, M. (2017). Association between adverse childhood experiences (ACEs) and developmental delay of preschool children in a rural area of Colombia. Journ Child Adol Trauma, 10, 225232. https://doi.org/10.1007/s40653-017-0179-3 Yamaoka, Y. & Bard, D. E. (2018). Positive parenting matters in the face of early adversity. Am J Prev Med, 56(4), 530539. https://doi.org/10.1016/j.amepre.2018.11.018 Table 1 Averages from the Pre- and Post-Survey Question How well do you feel like you understand trauma-informed care? How prepared do you feel to explain trauma-informed care to host families? How well do you feel like you understand children's behaviors from a sensory perspective? How prepared do you feel to explain possible sensory causes of challenging behaviors care to host families and partnering parents? How prepared do you feel to provide host families and partnering parents with sensory resources to help with their child's behaviors? Pre-Survey (n=7) Post-Survey (n=7) 2.86 3.86 2.71 4 2.71 4 2.43 3.86 2 4.14 Table 2 Family Coach Training Participant Quotes I really like this [training] because I feel like it doesnt elevate the stress or anxiety of what trauma-informed care is, it just makes you understand that it happens in all environments. Youve just made [trauma-informed care] more laymens terms. [The sensory styles explanation] is helpful. I like the pictures and the symbolism [of the different mugs as sensory styles]. I havent been able to attend coach trainingsbut catching up on the sensory video and it so great!!! You did a great job explaining all of thisand the trauma-informed care handout has great info. Figure 1 Theoretical Reasoning Diagram Appendix Doctoral Capstone Experience and Project Weekly Planning Guide Week 1 DCE Stage Orientation Weekly Goal Complete orientation with site and roles by the end of the week Objectives Meet all staff members and some family coaches to introduce myself and explain my project and experience goals Understand dress code, site norms, methods of communication, and usual meetings spots Screening/Evaluation Complete needs assessment Tasks Attend staff meetings Complete paperwork and trainings Create blurb to send out in January newsletter introducing myself Ask for contact info for family coaches and host families Familiarize myself with the database and the appropriate note format Obtain login for database and read through past case notes Finalize questions for needs assessment Determine who to send questions to Contact family coaches to assess need of content in educational programming Date complete 1/13/23 Obtain emails for those individuals and send out email assessing need 1/10/23 2 Screening/Evaluation Understand what the needs of the community are and start getting involved with the community Familiarize myself with hands-on work in Safe Families Meet some family coaches, host families, partnering parents, and children Connect with community organizations for partnership Volunteer as family friend for 2 families 1/20/23 Shadow family coaches and staff on home visits and intakes Read case notes after home visits and intakes Gather feedback from family coaches to help with project planning Attend staff meetings Attend outreach meetings 3 Implementation Plan for Create a plan implementation for the content of the programming Continue connecting with community partners Attend family coach meeting to gather additional feedback on resources Outline plan for educational programming Continue shadowing Attend staff meetings 1/27/23 Attend Creative Youth Housing Collective retreat 4 Implementation Start building educational resources Put together educational resources Set up pre- and post-test surveys Shadow staff in administrative positions Learn paperwork to be able to do recertifications, home assessments, and intakes by week 8 Volunteer as family friend 2/3/23 Participate in host family recertifications, home assessments, and intakes Attend staff meetings Begin drafting Google Slides presentation for education session Communicate with staff about timing of education in week 6 Draft pre- and post-test surveys for educational programming 5 Implementation Continue hands-on experience Continue family friend role Volunteer as family friend Put together educational resources Attend staff meetings Help with outreach Create content for 2 video resources 2/10/22 Finalize educational presentation for family coaches Attend Creative Youth Housing Collective meeting 6 Implementation Deliver programming Deliver educational resources Continue family friend role Administer pre- and posttest surveys to family coaches before and after education session 2/17/23 Create content for 3 more video resources Create handouts to correspond with videos based on feedback Attend staff meetings Shadow intake at hospital Volunteer as family friend 7 Implementation Continue hands-on experience Gather feedback from educational resources Plan additional videos and handouts based on feedback 2/24/23 Continue family friend role Attend staff meetings Help with outreach Volunteer as family friend Attend Creative Youth Housing Collective meeting 8 Implementation Continue hands-on experience Deliver and disseminate educational resources Continue family friend role Administer pre- and posttest surveys to family coaches and other participants before and after education session 3/3/23 Email family coaches the link to shared google folder with resources Attend staff meetings Volunteer as family friend Support family coaches Participate in advocacy for child needing services 9 Implementation Perform data analysis Continue family friend role Attend staff meetings 3/10/23 Analyze preand post-survey data Help with outreach Volunteer as family friend Run descriptive data Attend Creative Youth Housing Collective meeting 10 Discontinuation Perform data analysis Continue family friend role Perform home assessments Plan for dissemination Make changes to resources based on feedback 3/17/23 Discuss dissemination with staff Create feedback survey Attend staff meetings 11 12 Dissemination Dissemination Finalize dissemination plan and ensure sustainability Ensure sustainability Finalize changes in educational resources Send out feedback survey to family coaches Continue family friend role Attend staff meetings Perform home assessments Attend Creative Youth Housing Collective meeting Begin family coaching Family coach for 2 families 3/24/23 3/31/23 Perform home assessments Answer intake line Assess use of resources Analyze results of feedback survey Attend staff meetings 13 Dissemination Wrap up hands-on experience Ensure sustainability of project upon leaving Make all recorded resources easily accessible to staff and family coaches 4/7/23 Attend staff meetings Attend Creative Youth Housing Collective meeting 14 Dissemination Deliver final dissemination Finalize dissemination Present to stakeholders at site Final goodbyes with families Attend staff meetings 4/14/23  ...

... 1 Educational Support Group Implementation for Informal Caregivers of Persons with Dementia Madison Woo May, 2023 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Patricia Holmes, OTR 2 Abstract Informal caregivers are an exponentially increasing need for older adults and individuals who take on this role report high rates of burnout and a need for community support. This doctoral capstone project evaluated the needs of informal caregivers who provide care for persons with dementia at Clermont Park Life Community across various levels of care through the implementation of a social support group. Data collection included a pre and post-test survey and a weekly qualitative questionnaire to better understand needs of caregivers; observational data is also described in this report. Findings included data on sustaining a support group for caregivers, which provided an outlet for informal caregivers to share and listen to stories from peers. Clermont Park and its patrons benefited from this support group series and received recommendations for the future to continue to support caregivers at this site. 3 Educational Support Group Implementation for Informal Caregivers of Persons with Dementia Clermont Park is the oldest life community campus of the Christian Living Communities brand and offers all levels of care including independent and assisted living, skilled nursing, memory care, and adult day services (Clermont Park, n.d.). Clermont Parks mission is to provide client-centered and dignified care to patrons by facilitating relationships that honor the individual through older adulthood. There are many different types of programming that exist for residents and their family members to help support this mission; one of these programs includes an adult day center. The adult day center at Clermont Park provides stimulating activities and encourages social interaction, providing safe and quality care for loved ones who are community dwelling (Gitlin et al., 2019). The number of members using adult day services has grown in the past year, serving roughly 5 families in 2022 to 30-40 families in 2023. Informal caregivers are increasing exponentially as a form of care used by older adults, as recent trends display older adults living longer and healthier into their older age (CDC, 2019). Many older adults prefer to age in the home in their preferred communities where they can maintain as much independence as possible, a concept termed as Aging in Place (Wiles et al., 2012). While this may be the ideal way to transition to oldest adulthood to many, family caregivers or Informal Caregivers (IC) often take on the responsibilities to provide long-term care for these individuals. Many IC report feelings of unpreparedness and general burden when taking on this role due to the lack of tools, resources, and support to fully thrive in their roles (van der Lee et al., 2017). Prior to the COVID-19 pandemic, Clermont Park offered a support group for IC, but restrictions in group meetings caused the group to dwindle. The purpose of this project is to reimplement a support group for IC and evaluate its impact on creating community, exchanging learned knowledge, and decreasing general caregiver burden. 4 Background Nationally, caregivers of individuals with Alzheimers or related forms of dementia (ARFD) provide an enormous amount of care for the increasing older adult population. In terms of economic value, 11.3 million caregivers of people with dementia provided a combined 16 billion hours of unpaid help (2022 Alzheimers Disease Facts and Figures, 2022). This equates to approximately 271.6 billion dollars of unpaid care for individuals with dementia (2022 Alzheimers Disease Facts and Figures, 2022). In the state of Colorado, the value of unpaid care for caregivers of individuals with Alzheimers or other dementias totaled 3.7 billion dollars (2022 Alzheimers Disease Facts and Figures, 2022). Monetary compensation is far from the only set back IC face, as this population is at high risk to develop feelings of stress, depression, and social depravity (Vos et al., 2021). In addition to a lack of recognition for the work they put into caregiving, IC reported limited amounts of external support, education, and available resources greatly effects the care relationship (Plothner et al., 2019). Clermont Park offers a wide variety of services that benefit the overall health and wellbeing of members, residents, and participants. However, there is a lack of regular support offered to IC through Clermont Park outside of respite care. Prior to the COVID-19 pandemic, Clermont Park hosted a successful caregiver support group; however, according to the life enrichment coordinator of the assisted living sector at Clermont Park, the support group was unable to sustain due to community restrictions and lack of leadership. While the project was originally designed to have educational information topics and a traditional group leader, the issue of sustainability begs the question whether the social support group can remain beneficial if proposed as being led and sustained by the caregivers themselves. Julianne Cooper, Head of Rehabilitation for all outpatient therapy services at Clermont Park 5 suggested this doctoral capstone project act as a way to gain research and insight into what family caregivers at this particular site would find most beneficial (J. Cooper, personal communication, January 26, 2023). For example, asking the participants who attend this social support group questions such as, how would you like to see this program in the future?, what would make this a group meaningful to you?, and assess learning and topic information resonance with a simple questionnaire after each week to evaluate the outcomes of the social support group format, gaining data to support the need of a caregiver support group for Clermont Park beneficiaries. Director of Life Enrichment at Clermont Park, Andrew Sharp, provided insight into the needs of families who use Clermont Park skilled nursing and independent living services. While families who use adult day services might continue to take on the caregiver role with their care recipient continuing to live in the community, a support group should address exhaustion and caregiver burnout, as these families do not cease to be caregivers once their loved one progresses to using skilled nursing services (A. Sharp, personal communication, January 18, 2023). Sharps comment on the needs of families as they progress through the levels of care suggest that this capstone project could be advertised to more families than the adult day care users alone. Caregivers continue to provide care as financial and medical POA, day to day on-call assistance for staff members, and emotional support for their loved ones in long-term care. Caregiver needs are highly rooted in the effects of burnout and social isolation. Creating a traditional social support group would be beneficial in providing IC with a space to speak and relate to others who share their situation. Additionally, according to the social worker for skilled nursing patients, Bobbie Carr, health literacy has decreased, and COVID might have created a disconnect, created a panic mode, between hospital staff and families (B. Carr, personal 6 communication, January 13, 2023). Therefore, maintaining an educational piece to this capstone project may help IC learn medical jargon and address caregiving concepts that may go untouched from the current lack of caregiver support programs. Additionally, becoming an IC can be a major disruption in maintaining health lifestyles that demonstrate occupational balance. According to Wang et al. (2019), IC may find it difficult to address mental health and general motivation to perform tasks. Educational programming may be beneficial in teaching IC tools and skills to maintain occupational balance through reflection of burnout symptoms and their effect on quality of care. In a study by Faw et al. (2021), researchers in Northern Colorado created a social support program titled B-Sharp where members attend social community events with other caregivers in the area. Members who participated in these social events reported reduced feelings of isolation, a restored sense of self, and a more positive view in their identity as a caregiver (Faw et al, 2021). While Clermont Park does not currently offer formal programming specifically for IC, implementing this project can provide data to advocate for social programming. The results of needs assessments suggest that a social support group for family caregivers of individuals who have Alzheimers or dementia related diseases is necessary. Programming for caregivers would be greatly beneficial to help educate and support IC as they transition through levels of care with their care recipients. At Clermont Park, adults are encouraged to progress in the level of care that allows them to age most efficiently and with dignity. IC play a major role in this and are known nationally for being the backbone of long-term care (CDC, 2019, para. 2). This doctoral capstone will attempt to determine the needs and wants of informal caregivers with social support group programming to enhance social participation and decrease the effects of caregiver burden in family caregivers. 7 Theory Occupational therapy models can be helpful for guiding practice and programming in the community. For the proposed programming, the Person-Environment-Occupation-Performance (PEOP) model (see Figure 1) will help integrate occupational therapy (OT) principles to the Clermont Park population. This model provides steps to identifying needs, planning, and evaluating outcomes (Cole & Tufano, 2020). Following this model, the steps to the project are as follows: 1) conduct an needs assessment of the site, 2) Identify how OT can fill those needs, 3) Determine the target population for the project, 4) Identify how goals of the site and OT goals can align, 5) Measure the intrinsic/extrinsic factors that can help with supporting occupational performance, 6) Create a plan, 7) Implement the plan, and 8) Evaluate the outcome (Cole & Tufano, 2020). In addition to these steps, the project will conclude with dissemination to stake holders and other staff members at Clermont Park to advocate for IC and share collected data. Additionally, the Lifespan frame of reference will be used as it can be applied to people of any age who are experiencing transitional phases of life (Cole & Tufano, 2020). IC are often challenged with threats to occupational balance as they take on the caregiving role. OTs can offer tools and resources that support adaptations and modifications to help the caregiver through their care journey. IC may not be familiar with equipment/technology that enhance the safety and quality of life for those with ARFD, which will be addressed in the caregiver support group. Lastly, guiding the facilitator role over the support group is the CARE framework, described by Holliday et al. (2022), which describes how healthcare professionals can address principles of well-being, care planning, and education in ways that reduce burden and build awareness around risk factors that affect caregivers mental and physical health (Holliday et al., 2022). 8 Project Design The project design was produced in collaboration with the Assisted Living and Adult Day Center Director at Clermont Park, Terry Neal, who echoed the needs of Clermont Parks IC. The caregiver support group contains both an educational and a social aspect. Using the Lifestyle Redesign format (Clark, A. F., 2015), the group will begin with a didactic component, followed by a peer exchange and social component, and will close with a personal exploration or selfreflection component. The group is one hour per week for 6 weeks, with a reevaluation at 3 weeks to determine any improvements that can enhance experiences in the support group. To address lack of excess time and associated resources for respite care, support group sessions will occur during adult day care operating times, where caregivers can feel confident that their loved ones are safe while they attend this social support group. Each of the weekly educational topics are chosen based on the 7 dimensions of wellness: occupational, emotional, social, physical, spiritual, environmental, and intellectual (Stoewen, D. L., 2017). Using each of these dimensions, topics are geared towards the common needs of caregivers, including communication and queuing techniques (Petrovsky et al., 2020), burnout prevention/mindfulness (Brown et al., 2016), transitions in care resources, wander/fall prevention, assistive technology, and personhood preservation. Caregivers will be provided with an infographic to summarize information from daily topics. Progress is measured from an initial pre-survey which acts for participants to rate their quality of life, quality of the care relationship, level of support, and confidence in their role as a caregiver, as well as used resources and descriptive questions for current situations. Participants who attend half of the caregiver support group sessions will be asked to complete the survey again to measure improvements in the above-stated items. After each session, participants will be 9 asked open-ended questions in survey format to describe the relevance of daily topics as well as suggestions for improvements to increase the benefit of the caregiver support group. Surveys with both qualitative and quantitative questions will support efficient information gathering and do not require participants to be present every week, as this consistency cannot be guaranteed. The title of this group is the Caregiver Support Series. Advertisement for the caregiver support group will occur through flier handouts to adult day center members, posters in front lobbies of Clermont Park, and signage in high trafficked areas of the main Clermont Park building. Word of mouth will also be encouraged from staff members to share this resource to potential family caregivers who might benefit from participation in the support group. Project Outcomes During the Caregiver Support Series, 7 caregivers attended at least one of the support group sessions with an average of 3 participants in attendance each week; each of the 7 caregivers were administered a pre-test assessment. There were two IC that attended 3+ weeks and were administered a post-test during the 6th support group session. Additionally, two IC communicated interest in participating in the project, however they were unable to attend due to time conflicts. The pre and post- test results are listed in Table 1 and Table 2, respectively. The quantitative results of the pre-test suggest that families who currently use Clermont Park services have general stress from their role as a caregiver, but overall have a positive outlook on their relationship with their care receiver, have some confidence in their role as caregivers, and a generally neutral to positive overall quality of life. Participants reported feeling supported in their role as caregiver. One notable relationship occurred between the stage of dementia of the participants care receiver and the confidence, quality of life, and relationship caregivers have with their care receiver. IC whose loved one was either transitioning into a 10 memory care unit or are already receiving long-term memory care respite services reported lower scores on relationship and quality of life items of the pre-test in comparison to those using only adult day services for respite. These results suggest there may be an inverse relationship between the progress of dementia and the perceived quality of life and quality of care-relationship. Other studies have described this concept as a result of increased burden as the care receiver requires higher intensities of care (Prevo et al., 2018). In the post-tests, one participant rated their care relationship as improving, while the other participant reported a decrease in the care relationship. Regardless of the care relationship status, the perceived quality of life status remained the same between the pre and post-tests for these participants. Neither participant reported a change on items regarding support or confidence in their role as a caregiver. The weekly qualitative questionnaire gathered information on topic relevancy and recommendations for future sessions (see Figure 2). Across all six weeks of support group, participants shared three common thoughts: 1) There is benefit to hearing stories from other caregivers, 2) There is value in articulating personal experiences, and 3) Shared information on educational topics was helpful. One thematically consistent critique across participants was the need for recruitment. During the midterm evaluation, invitations were extended to other life communities; however, no additional participants outside of Clermont Park attended. A few notable observations occurred, including the level of vulnerability shared amongst participants between initial and final weeks of support group. Additionally, as relationships progressed, participants were noted to provide recognition of hardships to peers, a concept called reciprocity which often lacks within the care relationship and increases IC burnout (Koh et al., 2021). These observations support the need for longevity in a support group to continue to cultivate comfort in vulnerability amongst participants. 11 Summary Informal caregivers are an increasing need in many older adults lives; however, the wants and needs of those who provide care to individuals living with dementia may not be satisfied in all communities. This doctoral capstone aimed at addressing this issue at Clermont Park, a life community in the Denver, Colorado metro area. The project was inclusive to all IC who use Clermont Park services; attendants included members using adult day, memory care, and assisted living services. The needs of participants were determined using pre and postsurveys, as well as qualitative questionnaires. The outcomes of this capstone project demonstrate consistent findings with the greater body of literature. IC who are experiencing transitional periods or provide care for people in later stages of dementia report lower perceived quality of life and quality of the care relationship compared to those whose loved ones are in earlier dementia stages. Additionally, participants in this project found the social support group to be beneficial for sharing their stories and advice amongst peers. One limitation of this project includes limited transferability due to a low sample size; however, there is value in the individual circumstances specifically for the purpose of supporting continuation of the caregiver support group at Clermont Park. Participants also reported that educational topics were beneficial to supporting their role as caregivers. Following the 7 dimensions of wellness, caregivers were provided with infographics covering topics including fall risk reduction, wander prevention, assistive technology, and information on dementia stages. Clermont Park received a binder outlining the format of this support group, all infographics created for the support group series, and additional information recommended by IC who attended the support group. The binder will serve as a foundational building block for future facilitators of a support group at Clermont Park. 12 Conclusion Through this doctoral capstone project, Clermont Park staff received information on how the caregiver population who use respite services would benefit from additional programming, specifically in the form of a social support group. The binder containing recommendations for a support group structure as well as informative topics will serve both the informal caregivers of a future support group and the facilitators who lead the group. Occupational therapists are well equipped to address the needs of family caregivers of individuals living with dementia; this project uncovered how caregivers need continued support in their roles and routines, environmental safety, and social interaction outlets-- all of which are within the occupational therapy scope of practice (AOTA, 2020). Overall, this project provided a sustainable and informational support group model, and its continued implementation at Clermont Park has potential for bettering the lives of family caregivers who use this service. 13 References American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 7412410010. https://doi. org/10.5014/ajot.2020.74S2001 Brown, K. W., Coogle, C. L., & Wegelin, J. (2016). A pilot randomized controlled trial of mindfulness-based stress reduction for caregivers of family members with dementia. Aging & Mental Health, 20(11), 11571166. https://doi.org/10.1080/13607863.2015.1065790 Centers for Disease Control and Prevention [CDC]. (2019). Caregiving for family and FriendsA public health issue. U.S. Department of Health & Human Services. https://www.cdc.gov/aging/caregiving/caregiver-brief.html Clermont Park. (n.d.). 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Occupational Models: PEOP (PersonEnvironment-Occupation-Performance). https://lifelonglearningwithot.wordpress.com/tag/peop-model/ Petrovsky, D. V., Sefcik, J. S., Hodgson, N. A., & Gitlin, L. N. (2020). Harsh communication: characteristics of caregivers and persons with dementia. Aging & Mental Health, 24(10), 17091716. https://doi.org/10.1080/13607863.2019.1667296 Plthner, M., Schmidt, K., de Jong, L., Zeidler, J., & Damm, K. (2019). Needs and preferences of informal caregivers regarding outpatient care for the elderly: a systematic literature review. BMC Geriatrics, 19(1), 82. https://doi.org/10.1186/s12877-019-1068-4 Prevo, L., Hajema, K., Linssen, E., Kremers, S., Crutzen, R., & Schneider, F. (2018). Population Characteristics and Needs of Informal Caregivers Associated With the Risk of Perceiving a High Burden: A Cross-Sectional Study. Inquiry : a journal of medical care 15 organization, provision and financing, 55, 46958018775570. https://doi.org/10.1177/0046958018775570 Stoewen D. L. (2017). Dimensions of wellness: Change your habits, change your life. The Canadian veterinary journal = La revue veterinaire canadienne, 58(8), 861862. 2022 Alzheimers Disease Facts and Figures. (2022). Alzheimers Association. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf van der Lee, J., Bakker, T. J. E. M., Duivenvoorden, H. J., & Dres, R.-M. (2017). Do determinants of burden and emotional distress in dementia caregivers change over time? Aging & Mental Health, 21(3), 232240. https://doi.org/10.1080/13607863.2015.1102196 Vos, E. E., de Bruin, S. R., van der Beek, A. J., & Proper, K. I. (2021). " Its Like Juggling, Constantly Trying to Keep All Balls in the Air ": A Qualitative Study of the Support Needs of Working Caregivers Taking Care of Older Adults. International Journal of Environmental Research and Public Health, 18(11). https://doi.org/10.3390/ijerph18115701 Wang, X., Liu, S., Robinson, K. M., Shawler, C., & Zhou, L. (2019). The impact of dementia caregiving on selfcare management of caregivers and facilitators: a qualitative study. Psychogeriatrics, 19(1), 2331. https://doi.org/10.1111/psyg.12354 Wiles, J. L., Leibing, A., Guberman, N., Reeve, J., Allen, R. E. S. (2012). The Meaning of Aging in Place to Older People. The Gerontologist, 52(3), 357366. https://doi.org/10.1093/geront/gnr098 16 Table 1 Pre-test Assessment Participant # Type of Care Relationship (Spouse, Parent, Family, Friend) Average Hours of Care Provided per Week (0-10, 1120, 21-30, 40+) Current Respite Services Used Do you feel supported in your role as a caregiver? Do you feel confident in your role as a caregiver? How would you rate your relationship with your carereceiver? How would you rate your current overall quality of life? Participant Participants Participant #1 #2 #3 Spouse Spouse Spouse Participant Participant Participant Participant #4 #5 #6 #7 Parent Friend Family Family 40+ 40+ 21-30 0-10 0-10 11-20 11-20 Adult Day Adult Day Adult Day Memory Care Assisted Living Memory Care Memory Care Frequently Sometimes Nearly Always Nearly Always Nearly Always Frequently Sometimes 3- Fine 5- Great 2- Poor 2- Poor 3- Fine 4- Good 5- Great 4- Good 3- Fine 3- Fine 3- Fine 4- Good 4- Good 4- Good Sometimes Frequently Sometimes Sometimes Frequently Frequently Frequently 17 Table 2 Post-test Assessment Participant # Do you feel supported in your role as a caregiver? Do you feel confident in your role as a caregiver How would you rate your relationship with your care receiver? How would you rate your current overall quality of life? Participant Participant #2 #1 Frequently Sometimes Frequently Sometimes 4- Good 4- Good 4- Good 3- Fine Figure 1 Person-Environment-Occupation-Performance Model Note. PEOP model initially created by Baum & Christiansen in 1985. From Lifelong Learning with OT (https://lifelonglearningwithot.wordpress.com/tag/peop-model/). 18 Figure 2 Weekly Qualitative Questionnaire 19 Appendix A Week DCE Stage (orientation, screening, evaluation, implementation, discontinuation, dissemination) Weekly Goal Objectives Tasks Date Complete 1 Orientation Complete orientation by the end of the week Meet site mentor and other staff members to introduce self and project Learn what staff members might be good interviewees for project 1/13 Use staff interviews to format and design caregiver support group Create interview questions 2 Screening/Evaluation Meet with staff to research needs of caregivers by end of week 3 Get contact information for staff members who might assist with logistics 1/20 Email necessary staff members and set up meeting times Take notes during meetings Attend leadership meetings to continue meeting staff members 3 Screening/Evaluation Meet with staff to research needs of caregivers by end of week 3 Plan logistics of support group by Create schedule for support group Plan out support group topics Reach out to potential collaborators for support group Create interest flyer Coordinate with staff members to advertise caregiver support group 1/27 20 end of week 3 Work with activities director to book a space within Clermont Park Work with day center staff on best time/day for day center members 4 Screening/Evaluation Advertise Caregiver Support Series by end of week 4 Create materials for first support group by end of week 4 Start recruitment of potential family caregivers (adult day center, assisted living, skilled nursing, memory care) Prepare for first support group session Post fliers in front lobbies 2/5 Send Voice Friend message to families in all levels of care Meet family members at day center and give fliers Reach out to staff members who work with families and share upcoming support group dates Create first infographic Create pre-test assessment and weekly feedback questionnaire 5 6 Implementation Implementation Create next weeks support group materials by end of week Create infographic Create next weeks support Create infographic Implement support group session Create infographic and send to site mentor for approval 2/7 Create group session questions Create infographic and send to site mentor for approval 2/14 21 group Implement materials by support group end of week session 7 8 9 10 Implementation Implementation Implementation Implementation Create group session questions Create next weeks support group materials by end of week Create infographic Create next weeks support group materials by end of week Create infographic Create next weeks support group materials by end of week Create infographic Plan for final support group session and create materials by end of week. Administer final support group and collect posttest data Prepare for final week of implementation Create post test for final week of implementation Implement support group session Find books on personhood to share with group Implement support group session Implement support group session Implement support group session Create infographic and send to site mentor for approval 2/21 Create group session questions Create infographic and send to site mentor for approval 2/28 Create group session questions Create infographic and send to site mentor for approval 3/7 Create group session questions Create and print posttest to administer to group members Send message out to support group members to remind 3/14 22 them of final support group 11 12 13 14 Discontinuation Discontinuation Discontinuation Discontinuation Create first draft of binder and send to site mentor for corrections by end of week 11 Make corrections to binder by end of week 12 Complete subjects from Introduction and 7 dimensions of wellness Research data to be used on infographics Complete subjects from additional recommendations from staff and caregivers Have site mentor read binder for clarity Finish binder pages to leave with site Create presentation and present to stakeholders by end of week 13. Sign up for Eden Alternative Training by end of week 13. Disseminate to necessary staff and stakeholders and answer questions from staff members regarding project Make thank you cards for site mentor and Attend final days of capstone at Clermont Park and Holly Creek 3/24 Format infographics with cohesiveness Have occupational therapist on site read adaptive equipment/technology pages for recommendations Go through pages and check for spelling/grammar errors Present the binder in PDF view to ensure pages formatting is correct Contact site mentor and life enrichment coordinator regarding Eden training 3/31 4/7 Pull data from final writing assignment to present findings at leadership meeting Print part of binder to have visual aid at leadership meeting Attend graduation party at day center 4/14 23 day center staff. for Eden Training Participate in Eden Alternative Training. Appendix B. Doctoral Capstone Weekly Planning Guide Take notes during eden training to share with classmates and for final voice thread presentation Reach out to necessary staff members for postcapstone contact information  ...

... Equipping and Empowering Vulnerable Parents through Executive Function and Connective Parenting Resources Ashton Williams May, 2023 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Lori Breeden, EdD, OTR EQUIPPING AND EMPOWERING VULNERABLE PARENTS 1 Abstract Family Hope is an organization that provides childcare hosting to families in vulnerable circumstances. While children are in hosting, support coaches work with their parents to provide resources and offer social support. Support coaches needed additional resources to address parents' occupational wellbeing. Occupational therapy met this need by creating a transition tool of educational resources to empower parents through establishing healthy roles and routines, coach parents on connective, TBRITM parenting techniques, and to equip parents with executive functioning skills to promote family cohesion and occupational balance. The transition tool was piloted including eight sessions with one Family Hope mother. To assess parental competence, self-efficacy, and occupational performance, the Parental Sense of Competence Scale and Canadian Occupational Performance Measure was administered before and after intervention. Overall, parental competence, self-efficacy, occupational performance, and satisfaction improved after intervention. Support coaches will continue to use resources within the transition tool to assist families in need. Keywords: family, occupational performance, trust-based relational intervention (TBRITM), executive function, parenting skills EQUIPPING AND EMPOWERING VULNERABLE PARENTS 2 Equipping and Empowering Vulnerable Parents through Executive Function and Connective Parenting Resources Family Hope is a faith-based, non-profit organization that provides out-of-home hosting opportunities to prevent children from entering the foster care system (Family Hope, 2022). Family Hope offers volunteer placements, called host families, for children to stay when their parents cannot care for them for some time due to undesirable circumstances (Family Hope, 2022). Reunification of children and parents is the goal of this program. At Family Hope, transitions occur when a child is placed in a Host Familys care and when a child returns to their parents. Transitions can be difficult for volunteers, parents, and children, as this process can disrupt a familys daily routines, roles, and mental health. Family Hopes support coaches provide parents with resources, offer connections and support, and mentor parents to improve their quality of life (Family Hope, 2022). Occupational therapy promotes establishing healthy routines, roles, and mental health to improve a familys occupational performance. A transition tool of helpful resources can assist the coaching process. Education is also needed within Family Hope for parents and volunteers to understand trauma-informed care and connective parenting better. Parents and volunteers implement strategies from this education to form a relationship with a child to promote family cohesion, increase resiliency, and reduce adverse effects (Purvis et al., 2009; Nielson, 2014; Razuri et al., 2016). In this scholarly report, I will present the current literature and connect occupational therapy theoretical principles to my capstone project. Next, I will define the transition program while analyzing the programs outcomes and impact. Finally, I will include a synopsis EQUIPPING AND EMPOWERING VULNERABLE PARENTS 3 encompassing the overall capstone experience and a discussion regarding my projects sustainability and future implications. Background Needs Assessment A needs assessment at Family Hope consisted of semi-structured interviews with staff and volunteers, a faceted literature search, and a SWOT analysis. From the interviews, the most significant needs include assisting children and parents with healthy transitions and furthering trust-based parenting education. Parents requiring Family Hope services must clearly define family roles and establish routines within the home. Parents also need help incorporating social opportunities, self-care, and leisure activities into daily routines (Cerny et al., 2017). Foster Care and Family Preservation For children who experience adversity, foster care is available to improve the child's living conditions and safety. Foster care is a state-mandated, out-of-home, temporary service for children who cannot live with their parents or legal guardians (Centers for Disease Control and Prevention [CDC], 2021). The reasons for foster care placement include abuse, neglect, parent incarceration, parent loss, and parent illness (CDC, 20221). Parents and children from these situations often experience trauma, which can negatively manifest as decreased mental health, poor health, and increased risk behaviors (Razuri et al., 2016; Engler et al., 2022). The process of separating a parent and child can also be traumatic and lead to adverse effects on parents and children (Rapsey & Rolston, 2020). The Department of Child Services, the organization overseeing foster care, is overwhelmed due to the extensive number of children entering the system, lack of funding, and difficulty recruiting new foster parents (Howell-Moroney, 2013). EQUIPPING AND EMPOWERING VULNERABLE PARENTS 4 Similar organizations, such as Family Hope, exist to provide alternative solutions while providing services and resources to families in need. Family Hope services families experiencing homelessness, domestic violence, incarceration, unemployment, and poverty. Often, families seeking Family Hope services face a combination of these undesirable situations. Family Hope is unique since their model allows the parent to surrender her children to a host family temporarily and voluntarily. Even though this transition is voluntary, it can still be difficult for the parent and child. Parents using faith-based services reported much higher satisfaction than the national average, and faith-based organizations provide more resources and support to families (Howell-Moroney, 2013). Executive Function in Families Many parents involved with Family Hope have difficulty with their executive functioning skills, as these parents often experience traumatic and stressful situations. Executive function is a group of complex mental processes and cognitive abilities required for daily adaptive behaviors. Examples of these skills include attention, planning, prioritizing, organization, problem-solving, and self-control (Girotti et al., 2018). Many of these skills are required for quality parenting and household management (Deater-Deckard et al., 2012). Executive functioning takes place in a region of the brain called the prefrontal cortex. During stress, neural pathways in the prefrontal cortex can be disrupted, causing impairment in executive functioning skills (Girotti et al., 2018). Relational Interventions to Parents In addition to executive function, more specific trauma-informed parenting techniques are essential to promote parent-child connections. Family preservation aims to keep families together by keeping children with their families instead of placing children in foster care or other EQUIPPING AND EMPOWERING VULNERABLE PARENTS 5 alternative institutions. Parental growth occurs when families can rely on family-like, trust-based, supportive relationships (Rapsey & Rolston, 2020). Through these connective relationships and interventions, parents can improve their self-confidence and feel empowered (Razuri et al., 2016; Rapsey & Rolston, 2020). Trust-Based Relational InterventionTM (TBRITM) is an attachment-based, trauma-informed intervention that is designed to meet the complex needs of vulnerable children (Karyn Purvis Institute of Child Development [KPICD], 2022, p. 1). TBRITM consists of three principles: empowering, connecting, and correcting (Purvis et al., 2009; Razuri et al., 2016). the connecting principle consists of awareness and interaction. The empowering principle includes ecology and physiology to address physical needs, and the correcting principle incorporates proactive and redirective strategies (KPICD, 2022). TBRITM training improves family cohesion, reduces child mental health problems, reduces parental stress, and reduces mental health problems (Nielsen, 2014). Occupational Performance Coaching Occupational Performance Coaching (OPC) is an intervention for parents affected by occupational performance challenges. Occupational therapists use OPC to improve occupational performance in children and parents while improving parents' self-confidence relating to their parenting skills (Graham et al., 2013). OPC provides a strengths-based, goal-oriented, and occupation-based lens to improve maternal mental health and family routines (Graham et al., 2013). The three domains of OPC include emotional support, information exchange, and a structured process (Graham et al., 2013). Family Hope assigns a support coach to each case to build a relationship with the parent(s), provide emotional and social support, and direct parent(s) to available resources. Current research focuses on evaluating children's executive function and EQUIPPING AND EMPOWERING VULNERABLE PARENTS 6 targeting interventions with children; however, my project aims to intervene at the parent level to address household executive functioning and educate on trauma-informed parenting. Theoretical Integration Person-Environment-Occupation (PEO) is an occupation-based model that focuses on maximizing the individual's or group's "fit" (Cole & Tufano, 2008). Occupational "fit" is the balance of an individual's or group's person, environment, and occupation to maximize occupational performance (Cole & Tufano, 2008). At Family Hope, parents seeking services have an unbalanced person-environment-occupation "fit" due to a crisis or decreased occupational performance. This capstone project aimed to improve families' occupational performance and educate parents and volunteers on trauma-informed, connective parenting during transitional periods. The Model of Occupational Empowerment is a frame of reference (FOR) used for individuals or groups in disempowering environments (Cho, 2022). According to this FOR, occupational therapy's role is to provide interventions that empower clients, increase social support, and establish healthy roles and routines (Cho, 2022). At Family Hope, families call the Hope Line when experiencing a time of crisis. Often, families live in undesirable circumstances, making their ability to perform occupations difficult. OT intervention aims to improve self-efficacy, enhance their quality of life, and develop healthy routines and behaviors (Cho, 2022). Specifically, a transition tool was developed to coach parents on establishing healthy roles and routines. The goal of the transition tool was to improve the family's occupational performance and well-being in a sustainable approach.This frame of reference guided the transition tools development, as Family Hope parents could benefit from interventions targeted at understanding healthy household roles, creating family routines, and increasing social support. EQUIPPING AND EMPOWERING VULNERABLE PARENTS 7 Doctoral Capstone Plan Design Following the needs assessment, parents reported needing additional education and resources to address executive functioning and parenting skills during the Family Hope coaching process. Parents using Family Hope services wanted additional support and education regarding best parenting practices. I proposed the idea of creating a transition tool for parents to use with the help of a support coach to address these needs. Specific, evidence-based topics for the tool included: goal-setting, prioritizing needs, problem-solving, understanding parenting roles, establishing structure and routines, and trust-based parenting practices. I researched the effectiveness of including these topics in occupational therapy interventions. Positive and more sustainable outcomes occur when sessions are client-centered, relational, and coach-based (Graham et al., 2013; Razuri et al., 2016; Rapsey & Rolston, 2020; Engler et al., 2022). Applying these topics in occupational therapy sessions has improved parental self-confidence, reduced children's poor behavior, and increased family resiliency and cohesion (Razuri et al., 2016; Rapsey & Rolston, 2020; Engler et al., 2022; Wilburn et al., 2022). When writing the tool, I incorporated parent factors such as accessible language, length, and practical application. Once I completed a draft of the tool, Family Hope staff and an occupational therapist reviewed the tool for usability, clarity, and usefulness. Assessment Tool Selection I aimed to improve parents occupational performance and increase parents' competence and self-confidence through executive functioning activities and trauma-informed, connective parenting education embedded within the transition tool. Two outcome measures were selected and administered as pre-and post-tests to evaluate occupational performance and parental competence. The Canadian Occupational Performance Measure (COPM) assessed participants' EQUIPPING AND EMPOWERING VULNERABLE PARENTS 8 perceptions of their occupational performance and satisfaction. The COPM addressed three domains of occupational performance: self-care, productivity, and leisure. Additionally, the Parenting Sense of Competence Scale (PSOC) assessed participants' competence and self-efficacy regarding their parenting skills (Rodgers & Matthews, 2004). Rogers and Matthews (2004) reported that the PSOC was a reliable and valid tool for measuring parental competence. Implementation After finishing the planning stage, I began the recruitment process by asking support coaches for recommendations of parents who would benefit from transition tool sessions. I also presented my project and passed around an interest form during a Sweet Water ministry event held for mothers involved with Family Hope. From this process, I had one mother named Susan, a pseudonym given to protect privacy, commit to weekly coaching sessions. After Susan agreed to join my DCE program, I planned one-on-one, in-person coaching sessions with her. I piloted the transition tool resources with Susan over the course of eight sessions. We worked together for an hour to an hour and a half on different sections of the transition tool. During each session, I utilized principles of OPC such as encouraging client-directed activities, using a strengths-based lens, and keeping interventions goal-oriented. Additionally, I developed increased confidence and competence in using shared-decision making and therapeutic use of self during one-on-one client intervention sessions through reviewing literature and weekly self-reflection. Assessment To evaluate family occupational performance, I utilized the COPM. During the first transition tool session, one single mother, Susan, completed the assessment tool by discussing her current occupational performance. During administration, I asked Susan to describe her daily roles and routines. She then identified occupational performance problems and rated the EQUIPPING AND EMPOWERING VULNERABLE PARENTS 9 importance of the activities on a scale from 1 (low importance) to 10 (high importance). When administering the COPM, Susan identified six occupational performance deficit areas: self-care, finances, parenting, planning and scheduling, time management, and health and exercise. From these activities, she rated her current performance and satisfaction on a scale from 1 (lowest) to 10 (highest). For the reevaluation, Susan ranked the importance of the activity, her performance, and her satisfaction with each activity again. Then, I administered the PSOC to evaluate Susan's self-efficacy and confidence. The PSOC is a 17-item self-report survey where parents rate how much they agree with a statement using a 6-point Likert scale. Higher scores indicate a high parental sense of competence; scores range from 17 to 102. I administered both the COPM and the PSOC during the initial transition tool session and again during the final session after Susan completed all sections of the tool. Data Analysis After collecting and recording data, I calculated the sum scores for the pretest and posttest PSOC, as reported in Table 1 in Appendix A. When comparing the scores, Susan's PSOC scores increased by five points after transition tool sessions. Next, I compared Susan's posttest scores from the COPM with the pretest scores to assess gain or loss for performance and satisfaction, as reported in Table 1 in Appendix A. Each area increased after intervention by at least two points in terms of her performance. Susan's satisfaction increased in every area by at least one point after the intervention. After reviewing the data, the goals of the transition tool were met, as Susan's perception of her occupational performance improved and her satisfaction improved across all occupational deficit areas. Furthermore, Susan's parental sense of competence, confidence, and self-efficacy improved, as indicated by her PSOC scores after the transition tool intervention. EQUIPPING AND EMPOWERING VULNERABLE PARENTS 10 Summary Family Hope provides families in challenging circumstances with relational support through volunteer childcare hosting opportunities and support coach mentoring. While children are with host families, support coaches work with parents to address immediate needs, create short-term and long-term plans, and provide connection and support. After conducting a needs assessment, support coaches needed additional resources to address parents' holistic needs, as parents often struggled with an unbalanced occupational fit resulting in poor occupational performance. Occupational therapy filled this gap by using techniques from OPC to improve social support, empowering parents by establishing healthy roles and routines, and educating parents on implementing connective parenting with their children. The transition tool contained collaborative, interactive resources to address common occupational performance deficit areas. Implementation included piloting transition tool resources with a Family Hope mother named Susan. Susan and I worked together weekly for eight weeks on transition tool resources. These educational interventions focused on the importance of each section's concept, how to complete activities, and reflection asking her to consider how the concepts learned would apply to her family. During interventions, I educated Susan on the importance of why I created the section, coached her on how to complete the activity, and challenged her to think about how to apply the skill to her family's everyday life. Pre- post- measures of the PSOC and COPM indicate improvements in competence, self-efficacy, and occupational performance. These findings support existing literature, as developing healthy roles and routines improves parents' self-efficacy and occupational performance (Cho, 2022). Additionally, OPC and TBRITM education improves parents' self-confidence and family cohesion (Graham et al., 2013; Nielsen, 2014). EQUIPPING AND EMPOWERING VULNERABLE PARENTS 11 Conclusion During my capstone experience, I produced a transition tool consisting of 11 educational resources covering executive function and trust-based parenting. To develop these resources, I reviewed the current evidence to gain knowledge regarding occupational therapy's role in teaching executive functioning skills, the impact of establishing family roles and routines, and the importance of TBRITM implementation. I spent multiple hours observing Family Hope staff to gain a better understanding of my site and the parents they serve. Before working directly with parents, I applied therapeutic use of self, and I reviewed specific relational techniques such as occupational performance coaching to build rapport and maximize the impact of my program. The doctoral capstone experience improved my communication, leadership, and advocacy skills, effectively building relationships with staff and families, creating and leading a transition tool pilot program, and educating staff and families on occupational therapy's role in non-traditional settings. Family Hope's support coaches will access transition tool resources through a shared virtual drive. Support coaches will utilize these resources throughout the coaching process with parents to improve parents' self-efficacy, confidence, and occupational performance. Family Hope will also include additional education regarding trust-based parenting during volunteer training sessions to maximize volunteers' understanding of evidence-based, trauma-informed parenting. OT intervention can functionally improve the lives of families experiencing vulnerable situations. Creating collaborative, interactive educational resources for clients' needs can improve clients' confidence, self-efficacy, and occupational performance. The knowledge and skills gained from my doctoral capstone project will be applied to my future practice as an occupational therapist. EQUIPPING AND EMPOWERING VULNERABLE PARENTS 12 References Centers for Disease Control and Prevention [CDC]. (2021). About the CDC-Kaiser ACE Study. U.S. Department of Health and Human Services. https://www.cdc.gov/violenceprevention/aces/about.html Cerny, S., Aesoph, M., Green, N., & Johnson, B. (2017). Trauma-informed analysis of family occupational performance. American Journal of Occupational Therapy, 71. https://doi.org/10.5014/ajot.2017.71S1-PO7105 Cho, M. (2022). Model of occupational empowerment. OT Theory. https://ottheory.com/therapy-model/model-occupational-empowerment Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. SLACK Incorporated. Deater-Deckard, K., Chen, N., Wang, Z., & Bell, M. A. (2012). Socioeconomic risk moderates the link between household chaos and maternal executive function. Journal of Family Psychology, 26(3), 391. https://doi.org/10.1037/a0028331 Engler, A. D., Sarpong, K. O., Van Horne, B. S., Greeley, C. S., & Keefe, R. J. (2022). A systematic review of mental health disorders of children in foster care. Trauma, Violence, & Abuse, 23(1), 255-264. https://doi.org/10.1177/1524838020941197 Girotti, M., Adler, S. M., Bulin, S. E., Fucich, E. A., Paredes, D., & Morilak, D. A. (2018). Prefrontal cortex executive processes affected by stress in health and disease. Progress in Neuro-Psychopharmacology and Biological Psychiatry, 85, 161-179. https://doi.org/10.1016/j.pnpbp.2017.07.004 Graham, F., Rodger, S., & Ziviani, J. (2013). Effectiveness of occupational performance coaching in improving childrens and mothers performance and mothers EQUIPPING AND EMPOWERING VULNERABLE PARENTS 13 self-competence. The American Journal of Occupational Therapy, 67(1), 10-18. https://doi.org/10.5014/ajot.2013.004648 Howell-Moroney, M. (2013). Faith-based partnerships and foster parent satisfaction. Journal of Health and Human Services Administration, 228-251. EBSCOhost. https://web.s.ebscohost.com/ehost/pdfviewer/pdfviewer?vid=0&sid=8094e6d8-f61a-447 -92d2-d5726902a4f2%40redis Karyn Purvis Institute of Child Development [KPICD]. (2022). Trust-based relational intervention. Texan Christian University. https://child.tcu.edu/about-us/tbri/#sthash.M5yNDd3A.dpbs Nielsen, Lauren E., (2014). Trust-based relational intervention (TBRI) for adopted children receiving therapy in an outpatient setting. Honors Projects. 165. https://digitalcommons.iwu.edu/psych_honproj/165 Purvis, K. B., Cross, D. R., & Pennings, J. S. (2009). Trust Based Relational Intervention: Interactive principles for adopted children with special social-emotional needs. The Journal of Humanistic Counseling, Education and Development, 48(1), 3-22. https://doi.org/10.1002/j.2161-1939.2009.tb00064.x . Rapsey, C. M., & Rolston, C. J. (2020). Fostering the family, not just the child: Exploring the value of a residential family preservation programme from the perspectives of service users and staff. Children and Youth Services Review, 108. https://doi.org/10.1016/j.childyouth.2019.104505 Razuri, E. B., Hiles Howard, A. R., Parris, S. R., Call, C. D., DeLuna, J. H., Hall, J. S., ... & Cross, D. R. (2016). Decrease in behavioral problems and trauma symptoms among at-risk adopted children following web-based trauma-informed parent training EQUIPPING AND EMPOWERING VULNERABLE PARENTS 14 intervention. Journal of Evidence-Informed Social Work, 13(2), 165-178. https://doi.org/10.1080/10888705.2014.950733 Rogers, H., & Matthews, J. (2004). The parenting sense of competence scale: Investigation of the factor structure, reliability, and validity for an Australian sample. Australian Psychologist, 39(1), 88-96. https://doi.org/10.1080/00050060410001660380 Wilburn, V., Huber, M., Senter, D., Stoll, H. (2022). Considerations for occupational therapists in developing community-level interventions for youth with high adverse childhood experiences (ACE). The Open Journal of Occupational Therapy, 10(1), 1-7. https://doi.org/10.15453/2168-6408.1800 EQUIPPING AND EMPOWERING VULNERABLE PARENTS 15 Appendix A Table 1 Findings Before and After Transition Tool Intervention using the PSOC and the COPM Assessment Pre-test Post-test 76 81 PSOC Total score COPM Performance Satisfaction Performance Satisfaction Self-care 4 3 8 7 Finances 2 1 9 8 Parenting 5 7 10 9 Planning & Scheduling 5 2 10 9 Time Management 4 2 10 10 Health & Exercise 5 1 7 6 EQUIPPING AND EMPOWERING VULNERABLE PARENTS 16 Appendix B Table 2 DCE Weekly Planning Guide Week 1 2 3 DCE Stage Weekly Goals Objectives Tasks Orientation - Attended a weekly staff meeting to meet staff and - Complete orientation by the end of educate them on my project. week 1. - Developed supervision - Create a Timely & Weekly Planner plan w/ site coordinator by the end of week 1. - Integrated syllabus into planner - Set up times with key staff members - Ensured all orientation paperwork is signed by the end of the week - Scheduled observation hours for home visits, home evaluations, intake meetings, Sweet Water groups, and more - Created elements of Scholarly Report Drafts Screening/ Evaluation - Complete and submit introduction draft by end of week 2. - Complete literature search by end of week 2. - Create a template draft for transition tool by the end of week 2. - Finalize Needs Assessment by end of week 2. - Attended observation of daily operations - Attended Home Visit - Attended a Home evaluation - Outlined and drafted backgrounds section - Sent template to site coordinator for edits - Attended a weekly supervision hour / site coordinator - Attended weekly staff meeting - Reviewed how to conduct a faceted literature search Screening/ Evaluation - Complete and submit background draft by end of week 3. - Finalize transition tool by the end of week 3. - Create a social story for Intake - Established outcome assessment - Planned introduction transition tool session - Reviewed outcome assessment with capstone coordinator and faculty mentor - Attended weekly staff meeting - Attended weekly supervision hour / site coordinator EQUIPPING AND EMPOWERING VULNERABLE PARENTS 17 transition by end of week 3. - Send transition tool to faculty mentor and Family Hope staff for feedback by end of week 3. 1) Complete and submit design & implementation draft by the end of week 4. 2) Schedule at least 1 transition tool session for next week by the end of week 4. 3) Revise transition tool using feedback by the end of week 4. - Scheduled meetings with Family Hope staff and faculty mentor to discuss feedback - Attended an intake meeting - Began the recruitment process - Attended weekly staff meeting - weekly supervision hour / site coordinator - Attended support coach visits to build rapport with mothers - Attended housing opportunity visit to build rapport with mother - Attend weekly staff meeting - Attended a weekly supervision hour w/ site coordinator - Met with faculty mentor to discuss implementation and assessment - Attended potential parent visit to built rapport with mother 4 Screening/ Evaluation 5 - Implement an introductory transition tool session over goal-setting and prioritizing needs Implementation with a parent by the end of week 5. - Meet with Bethany to learn about the intake process by the end of week 5. - Scheduled and implemented one transition tool session - Attended Sweet Water group to recruit participants & build rapport with mothers 6 - Implement week 2 transition tool session over creating daily and Implementation weekly schedules by the end of week 6. - Scheduled next transition - Attend weekly staff meeting tool session with Susan - Attended weekly supervision hour / site - Attended a home visit with coordinator a support coach 7 - Implement week 3 transition tool session over connective parenting Implementation and TBRITM techniques by the end of week 7. - Scheduled next transition tool session with Susan - Attended Sweet Water to connect with mothers - Attend weekly staff meeting - Attended weekly supervision hour / site coordinator - Printed more transition tool resources EQUIPPING AND EMPOWERING VULNERABLE PARENTS 18 - Completed midterm evaluation 8 - Complete and submit program: outcomes by the end of week 8. - Implement week 4 transition tool Implementation session over understanding parenting roles by the end of week 8. - Scheduled next transition tool session with Susan - Began drafting program outcomes - Attend weekly staff meeting - Attended weekly supervision hour / site coordinator 9 - Implement week 5 transition tool Implementation session over problem solving skills by the end of week 9. - Scheduled next transition tool session with Susan - Attend weekly staff meeting - Attended weekly supervision hour / site coordinator - Attended parent and home visit with a support coach - Edited scholarly report draft 10 - Scheduled next transition - Implement week 6 transition tool tool session with Susan session over prioritizing needs part Implementation - Provided consultant II and budgeting by the end of week support to parent and host 10. family - Attend weekly staff meeting - Attended weekly supervision hour / site coordinator - Attended an intake meeting - Texted and called parents and host family to check on children - Implement week 7 transition tool session over creating visual - Scheduled next transition Implementation checklists to improve routines by the tool session with Susan end of week 11. - Attend weekly staff meeting - Attended weekly supervision hour / site coordinator - Edited scholarly report draft - Met with faculty coordinator to discuss DCE progress and ask questions regarding APA formatting and data analysis. 11 EQUIPPING AND EMPOWERING VULNERABLE PARENTS 19 12 - Implement final transition tool session to discuss sustainability and reflect on learning by the end of week 12. - Complete data analysis by the end Discontinuation of week 12. - Educate Support Coaches on how to use the Transition Tool resources with parents during the coaching process by the end of week 12. - Scheduled follow-up with Susan - Reviewed data analysis strategies with faculty mentor - Attended a support coach meet-up to educate support coaches on my project 13 - Complete and submit abstract, summary, & conclusion draft by end of week 13. - Create a Family Hope Discontinuation dissemination presentation by the end of week 13. - Finalize a virtual Transition Tool to share with Family Hope staff by the end of week 13. - Rehearsed dissemination presentation - Attend weekly staff meeting - Created a Google folder of - Attended weekly supervision hour / site transition tool resources coordinator - Compiled and organized transition tool resources 14 - Complete scholarly report rough draft of DCE Report by the end of week 14. - Present dissemination presentation to Family Hope staff by the end of week 14. - Complete DCE VoiceThread project by the end of week 14. Dissemination - Combine all sections of scholarly report into one document - Presented to Family Hope staff - Consulted with Sweet Water volunteers regarding TBRITM techniques - Completed DCE - Attend weekly staff meeting - Attended weekly supervision hour / site coordinator - Created a Support Coach User Manual for the Transition Tool - Attend weekly staff meeting - Attended weekly supervision hour / site coordinator - Called Sweet Water volunteer to discuss future plans - Recorded VoiceThread presentation EQUIPPING AND EMPOWERING VULNERABLE PARENTS VoiceThread presentation 20 EQUIPPING AND EMPOWERING VULNERABLE PARENTS 21  ...

... Community Based Fall Prevention Program for Older Adults Faith Wilkins, OTS May, 2023 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Beth Ann Walker, PhD, MS, OTR, FAOTA 2 Abstract Falls are a leading cause of injury in older adults attributed to lack of physical activity, social isolation, and health conditions. Fall prevention courses are designed to educate participants on fall safety, increase activity levels and social engagement. The purpose of this capstone experience was to develop and evaluate the effectiveness of implementing educational sessions based upon the evidence-based fall prevention program My Safe and Sound Plan'' delivered to older adults at Flanner House. The value of the group fall prevention courses was assessed by participants through pre/post tests using a Likert scale. All participants reported an increase in engagement in activities they enjoy. Five out of six participants reported feeling more satisfied with life. All participants reported a reduction in fear of falling. Four out of six participants reported an increase in their exercise frequency. Five out of six participants reported an increase in knowledge of fall risks. The results of this capstone project indicate a positive impact on participant knowledge, exercise levels, and fear of falling. 3 Introduction Flanner House is a nonprofit organization that has been serving the Northwest side of the Indianapolis community since 1898. Flanner Houses mission statement is 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 selfsufficiency (Flanner House, 2022). Flanner House recognizes the lack of innovative, accessible and person-centered services offered in the community. Flanner House offers residents a safe, structured environment for individuals of all ages, abilities, and backgrounds to learn, play and engage with the community around them. The organization analyzes the socio-economic situation of the city's residents to tailor its programs and target key community issues. This year Flanner House is celebrating 125 years of serving thousands of individuals in Indianapolis (Flanner House, 2023). The Senior Program at Flanner House has a variety of programs and activities offered for the older adult guests to promote quality of life and stay engaged. Even a modest increase in social activities can have a significant impact on health and quality of life (Lachman, et al., 2018). Engaging in social and productive activities, like taking an art class or becoming a volunteer in your community, may help to maintain well-being (National Institute of Aging, 2017). Falls in older adults are associated with limitations in activity participation and a loss of personal independence (Leland et al., 2012). According to the CDC (2019), one out of five falls causes a serious injury such as broken bones or a head injury. This indicates the importance of fall prevention interventions for older adults in the community. Implementing an evidencedbased fall prevention program will address specific risk factors and apply targeted interventions to address those risks. 4 Background Occupational Therapy The National Institute on Aging suggests that older adults who participate in meaningful activities, like volunteering in their communities, say they feel happier and healthier (2017). Falls present as barriers to participating in meaningful activities older adults want to do at home and in the community safely. A study completed by Wheeler et al. (2018) showed that occupational therapists demonstrated a 22.2% improvement in implementing evidence-based interventions after completing fall prevention training modules. Elliott and Leland (2018) found that exercise, education on prevention, home safety modifications, and fall prevention programs are effective in reducing the number of falls in older adults. When older persons living in the community received an assessment and multifactorial interventions tailored to their needs, the number of falls was reduced by 25 percent (Van Voast Moncada, 2011). Successful occupational therapy interventions for fall prevention include improving strength, balance, gait through exercise, managing medications, and reducing the fear of falling (Leland, et al., 2012). Occupational therapy practitioners are uniquely qualified to address the multifactorial nature of falls, given their knowledge of factors that influence occupational performance (Peterson & Clemson, 2008). The guidance of an occupational therapist mindset will help to take steps to reduce fall risks and safely increase occupational engagement in activities they value. Falls and Fall Prevention The United States Census Bureau projects that in 2030, one in five Americans will be 65 years old or of retirement age. Falls are a major concern for older adults that lead to injuries, fear of falling, loss of confidence, and a loss of independence when performing daily activities and community participation (Pereira et al., 2008). Many older adults have a higher amount of 5 risk factors resulting in a higher prevalence of falls. Risk factors include weak muscles, poor balance, dizziness, foot injuries, memory issues, vision/ hearing impairments, medications, behaviors, and changes in bladder or bowel (CDC, 2017). The CDC states, in 2019, the emergency department recorded over 3 million visits for older adult falls. Some falls lead to injury and to fear of falling. The psychological impacts of experiencing a fall can result in older adults getting out of the house less often, resulting in lower levels of physical activity, social connection, and occupational participation (Curl et al., 2020). A Fall Prevention program may play an important role in education on fall safety, risks, and increase activity levels and social engagement. Community-based organizations, such as Flanner House, play an important role in promoting the health and well-being of the residents in their community. Many of the services provided by Flanner House help people of all ages maintain healthy lifestyles and improve their quality of life. This includes expanding efforts to reduce falls among older adults while they age in place. Many community settings offer group-based fall prevention programs for older adults. Fall prevention programs are designed to educate individuals on fall safety, with the goal of increasing social participation and activity levels. There is a plethora of evidence-based fall prevention programs such as Healthy Steps in Motion, a Matter of Balance, Healthy Steps for Older Adults, Stay Active and Independent in Life, and others (NCOA, 2021). Thompson et al., (2019) found that exercise interventions aimed at reducing falls in older adults exercise classes containing multiple components (i.e., balance, strength training) exhibited a significant reduction in the relative risk of falls, as well as risk of falling. Valatka et al. (2021) found that 75% of participants who reported falls prior to participating in the fall prevention program Matter of Balance reported a reduction in falls and 71% reported a reduction in fear of falling 6 following the course. Participants in the Fallproof Balance and Mobility Program expressed their experiences of better fall prevention strategies and how the program positively impacted fear of falling, agility, and posture (Osho et al., 2020). Involving physical activity as well as non-exercise-based programs that offer indirect physical benefit and social engagement have been shown to decrease fall levels (Albert & King, 2017). Physical activity and social engagement are valuable for physical health, mental well-being, and satisfaction in community programs. The My Safe and Sound'' Plan: For Staying Falls Free (Howard, 2018) will be used for participants to learn to view falls and fear of falling as controllable, set realistic goals to increase daily activity in their day, change their environment to reduce fall risk factors, and exercise to increase strength and balance. This program consists of group settings covering a range of issues including falls and risk, strength and balance exercises, home hazards, foot care, vision, vitamin D and calcium, heart health, and medication management (Howard, 2018). Prevention of falls is vital to maintain personal independence in older adults. Occupational therapists can use education to change behavior and improve older adults falls self-efficacythat is, their confidence in performing activities without falling (Cheal & Clemson, 2001; Peterson & Murphy, 2002). Using an evidence-based tool, such as My Safe and Sound'' Plan, with content validity increases the likelihood of clear evidence translation and successful occupational therapy intervention outcomes'' (Howard et al., 2019). The goals of the program are to help older adults improve and/or maintain mobility and independence, learn and use health information focused on falls reduction and other health-related behaviors, and socially engage with other older adults. 7 Theory/ FOR The theoretical model for occupational therapy, Person- Environment-OccupationPerformance (PEOP), was used to inform this capstone project. This model focuses on factors and its relationship to successful occupational participation (Cole & Tufano, 2008). It was used to examine multiple factors related to needs and barriers to falls and fall prevention. The PEOP (Figure 1) Model demonstrates the relations of the person, environment, occupation, and performance influence. If one aspect changes, such as the environment, then this can affect the person's occupational engagement or participation. By using this model, occupational therapists can develop fall prevention programs which explore the interaction between person, environment, occupation, and performance to help older adults to make informed decisions to reduce fall risks and promote occupational participation. The Lifespan Frame of Reference works well with the PEOP model because the person, environment, and occupation domains are always interacting, changing and developing across the lifespan. For older adults, the Lifespan reference addresses motivational drives and transitional roles (Cole & Tufano, 2008). Older adults who have a negative perception of aging and have difficulty transitioning through life have higher risk for poor health and functional outcomes (WHO, 2016). This frame of reference will be used as a guide to consider the transitional roles associated with aging to facilitate the delivery of a fall prevention program aimed to enhance participation and engagement in their environment and occupations. The PEOP model and Lifespan Frame of Reference served to provide a framework for better understanding how occupational therapy can be involved at Flanner House to create fall prevention programming that better targets the perceived wants and needs of the older adults the organization serves. 8 Project Design Falls are the leading cause of fatal and non-fatal injuries among older adults. Research shows that falls can be prevented, although falls are commonly seen as a naturally occurring event for older adults. With the growing older adult population, resources for effective fall prevention strategies can benefit the community. Increased fall rates in the older population can be from various issues including social isolation, illness, and lack of activity. The purpose of this Doctoral Capstone Experience (DCE) is to develop and evaluate the effectiveness of educational sessions based upon an evidence-based fall prevention program My Safe and Sound Plan. Participants were surveyed before and after completion of the 4-session course on their selfperceived fear of falling, life satisfaction, and lifestyle habits. The fall prevention program included fall risk assessments, education, exercise, and support for older adults through social engagement. My safe and sound plan includes fall risk assessments such as strength, endurance (30 second chair stand), balance, functional reach, and balance confidence (Howard, 2018). An additional measurement the student included was the Fall Efficacy Scale (FES), an assessment tool based on the construct of self-efficacy, to incorporate behavioral implications (confidence, self-efficacy) as they contribute to choices that can increase or decrease fall risk and fear of falling. Project Implementation This was a single group pretest/posttest project of older adults participating in a group fall prevention program, using My Safe and Sound Plan, in a community setting between February 2023- March 2023. There were four educational sessions consisting of group discussions on various topics related to fall risks encouraging social interaction and storytelling (Refer to Table 1 for schedule and organization). Every session included the teaching of educational concepts, 9 interactive activities, and discussion to engage the participants. The student developed materials including a lesson plan, printed session handouts, informational handouts, and activity worksheets to correspond with each sessions topic. The course was voluntary, at no cost, to the older adults participating in the Senior Program at Flanner House. The program was intended for older adults concerned about falling, restricting activities in daily life due to fear, having a fall history, are 60 years of age or older, or are interested in improving their strength and balance. Challenges in implementation included transportation access and lack of male enrollment. Successes included engagement and participation throughout the program. Project Outcomes A total of six older adults agreed to participate in the Fall Prevention Program. There were five females and one male. The participants were aged 75 years or older. All participants were present during the last three sessions and completed pre and post questionnaires. There were only five participants during the first session. Data collected for information finding included fall frequency, age, social support, assistive device (cane, rollator, etc.), demographic information, fall risks at baseline including a 30 second chair stand, strength, balance screening, taking more than 3 medications, frequency of social activity outside the home, average weekly exercise, and whether the participant had an established exercise routine. Only one senior reported falling six months prior to the start of the program and three other older adult participants had a fall history within the past five years. The 30 Second Chair Stand Test is a physical performance test that was used to measure endurance. The participant, with arms folded across the chest and feet shoulder-width apart, completed as many full stands as possible in 30 seconds. Due to safety concerts, three participants could not complete the 30 second chair stand, indicating a fall risk. The strength test 10 included completing one chair stand with arms folded across the chest and feet shoulder width apart. The balance test consisted of the participants standing in front of a chair, with their feet together, arms folded across their chest and holding their balance for 30 seconds. The FES was used to measure falls self-efficacy. Results show that five out of six participants reported that fear of falling did not have an effect on their life before implementing the program. Although, after implementing the program, participants reported improvements in fear of falling. A five-point Likert scale was used to assess self-reported pre and posttests about the value of group fall prevention courses on fear of falling affecting their ability to participate in activities they enjoy, life satisfaction, comfort openly expressing concerns, exercise frequency, social engagement, and knowledge on fall risks (footwear, vision, medication/ vitamin d, home safety, and exercise/ physical activity). All participants reported an increase in comfort expressing concerns to a healthcare provider about different risks for falling. All participants reported an increase in engagement in activities they enjoy. Only five out of six participants reported feeling satisfied with life. All participants reported a reduction in fear of falling. There were four participants who reported an increase in their exercise frequency and five reported an increase in knowledge of fall risks (vision, footwear, etc.), with the one senior being undecided. Refer to Figures 1-5 for a visual to participants responses using the five-point Likert Scale. To track follow-up behaviors and adherence during the program, a one-page weekly exercise log was used to record participation in strength and balance exercises at home. Only one out of the six participants did not complete their exercises weekly over the 4-week course. After completion of the program, five participants reported that they plan to continue to complete the exercises learned for strength and balance. 11 Summary This capstone project evaluated the effects of a 4-session educational group based on the My Safe and Sound Fall Prevention program on fall frequency, exercise, fear of falling, and life satisfaction in community dwelling older adults by self-report. The program was designed as a tool for fall prevention for older adults living served by Flanner House. The program was designed to encourage most participants to increase their engagement in weekly exercise. Participants were encouraged to continue the exercises they learned after completion of the course. Most of the participants reported some form of exercise prior to the program, but increased frequency was reported following the course. In addition, most of the participants denied fear of falling impacting their engagement in occupations before the program. Although, the participants expressed improvement in fear of falling after completion of the program. The group sessions allowed individuals to share knowledge, strategies, storytelling, and experiences to increase a positive program outcome. The program promoted adherence to a weekly exercise plan to maintain and improve physical mobility and self-efficacy. Falls can have a major impact on an individuals quality of life. Implementing multiple preventive measures early and evaluating them often can facilitate your mobility, reduce your chances of losing balance, and help maintain your quality of life (Manor, 2019). The results of this capstone project indicate a positive impact on participant knowledge, exercise levels, and fear of falling. Conclusion The My Safe and Sound Plan: For staying falls free educational sessions were effective in increasing fall related knowledge to community dwelling older adults and their ability to reduce fall risk factors. Encouraging fall risk reduction and behavior change in older adults is essential in fall prevention due to the multifactor risks and potential issues associated with 12 falling. Participants from Flanner House who participated in this capstone project self-reported decreased fear of falling affecting their everyday engagement in activities, increased exercise frequency, and life satisfaction. Flanner House can use My Safe and Sound Plan to help educate older adults on fall prevention strategies. Occupational therapy plays a critical role in improving safety and emphasizes the importance of reducing fall risks inside the home. Falls are an important area of practice for occupational therapists and require a holistic approach to reducing fall risks. Occupational therapists working with community- dwelling older adults should be aware of fall prevention research and recognize the need for future research demonstrating the efficacy of occupational therapy interventions addressing fall prevention in the areas of medication, behavior modification, vision, and appropriate footwear. 13 References Albert, S. M., & King, J. (2017). Effectiveness of statewide falls prevention efforts with and without group exercise. Preventive Medicine, 105, 59. doi:10.1016/j.ypmed.2017.08.010 Barney, K. F., & Perkinson, M. A. (2016). Occupational therapy with aging adults: Promoting quality of life through collaborative practice (pp. 140-141). St. Louis, MO: Elsevier. Centers for Disease Control and Prevention. (2017). Fact sheet risk factors for Falls - CDC. https://www.cdc.gov/steadi/pdf/STEADI-FactSheet-RiskFactors-508.pdf Centers for Disease Control and Prevention. (2019). Important facts about falls. https://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html Cheal, B., & Clemson, L. (2001). Older people enhancing self-efficacy in fall-risk situations. Australian Occupational Therapy Journal, 48, 8091. http://dx.doi.org/10.1046/j.14401630.2001.00250.x Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, N.J.: SLACK Inc. Curl, A., Fitt, H., & Tomintz, M. (2020). Experiences of the built environment, Falls and fear of falling outdoors among older adults: An exploratory study and Future Directions. International Journal of Environmental Research and Public Health, 17(4), 1224. https://doi.org/10.3390/ijerph17041224 Elliott, S., & Leland, N. E. (2018). Occupational Therapy Fall Prevention Interventions for Community-Dwelling Older Adults: A Systematic Review. American Journal of Occupational Therapy, 72(4), 7204190040p1. doi:10.5014/ajot.2018.030494 14 Flanner House. Flanner. (2023). https://www.flannerhouse.org/leadership Howard, B. S. (2018). My Safe and Sound Plan. Howard, B., Boomershine, K., Gramman, R., Schirmer, C., & Schomber, J. (2019). Determining content validity of My safe and sound plan, a fall-risk self-assessment workbook. The American Journal of Occupational Therapy, 73(4_Supplement_1). https://doi.org/10.5014/ajot.2019.73s1-po7011 Lachman, M. E., Lipsitz, L., Lubben, J., Castaneda-Sceppa, C., & Jette, A. M. (2018). When adults dont exercise: Behavioral strategies to increase physical activity in sedentary middle-aged and older adults. Innovation in Aging, 2(1). https://doi.org/10.1093/geroni/igy007 Leland, N. E., Elliott, S. J., O'Malley, L., & Murphy, S. L. (2012). Occupational Therapy in Fall Prevention: Current Evidence and Future Directions. American Journal of Occupational Therapy, 66(2), 149-160. doi:10.5014/ajot.2012.002733 Manor, B. (2019). Preventing falls in older adults: Multiple strategies are better. Harvard Health. https://www.health.harvard.edu/blog/preventing-falls-in-older-adults-multiplestrategies-are-better-2019102218085 National Council on Aging. (2021). Evidence-Based Falls Prevention Programs. The National Council on Aging. https://www.ncoa.org/article/evidence-based-fallsprevention-programs Osho, O. A., Harbidge, C., Hogan, D. B., Manns, P. J., & Jones, C. A. (2020). Evaluation of a 15 balance and mobility program for older adults at risk of falling: A mixed methods study. Journal of Evaluation in Clinical Practice, 27(2), 307315. https://doi.org/10.1111/jep.13413 Pereira, C. L., Vogelaere, P., & Baptista, F. (2008). Role of physical activity in the prevention of Falls and their consequences in the elderly. European Review of Aging and Physical Activity, 5(1), 5158. https://doi.org/10.1007/s11556-008-0031-8 Peterson, E. W., & Clemson, L. (2008). Understanding the role of occupational therapy in fall prevention for community-dwelling older adults. OT Practice, 13(3), CE1CE8. Rivera-Torres, S., Fahey, T. D., & Rivera, M. A. (2019). Adherence to exercise programs in older adults: Informative report. Gerontology and Geriatric Medicine, 5. https://doi.org/10.1177/2333721418823604 Thompson, C. J., Holskey, T. H., Wallenrod, S., Simunovich, S., & Corn, R. (2019). Effectiveness of a fall prevention exercise program on falls risk in community-dwelling older adults. Translational Journal of the American College of Sports Medicine, 4(3), 1622. U.S. Department of Health and Human Services. (2017). Participating in activities you enjoy. National Institute on Aging. https://www.nia.nih.gov/health/participating-activities-youenjoy Valatka, R., Krizo, J., & Mallat, A. (2021). A survey-based assessment of Matter of balance participant fall-related experience. Journal of Trauma Nursing, 28(5), 304309. https://doi.org/10.1097/jtn.0000000000000602 Van Voast Moncada, L. (2011). Management of Falls in Older Persons: A Prescription for Prevention. American Family Physician, 84(11), 12671276. 16 Wheeler, E., Coogle, C., Fix, R., Owens, M., Waters, L. (2018). Physical and Occupational Therapy Practice Improvement Following Interprofessional Evidence-Based Falls Prevention Training. J Allied Health. 47(1), 9-18. World Health Organization. (2016). Discrimination and negative attitudes about ageing are bad for your health. World Health Organization. https://www.who.int/news/item/29-092016-discrimination-and-negative-attitudes-about-ageing-are-bad-for-yourhealth#:~:text=Older%20people%20who%20feel%20they%20are%20a%20burden,7.5% 20years%20less%20than%20people%20with%20positive%20attitudes. Table 1. 17 Session 1 (Week 5) Introduction and Exercise Overview of the program, sharing fall experiences, learning different fall risks, and introducing exercises, benefits and barriers of exercise, and safe mobility, changing their mind -Identification of intrinsic/extrinsic fall risk factors. - Participants shared personal experiences and feelings related to falling -Educational concepts -Small group discussion - Instruction on strength and balance exercises - Exercise log Session 2 (Week 6) Home Safety Going over different home safety techniques and adaptive equipment. Identify hazards in the home, go over the home safety checklist, and problem-solving solutions. - Educational concepts -Small group discussions at each table -Activity - Home safety checklist and exercise log Session 3 (Week 7) Health Management Talk about certain medications that increase fall risks. Identify the importance of heart health, Vitamin D and Calcium to protect from fall injury. -Shared results of their Home Hazard Checklists - Educational Concepts -Small group discussion - Activity - Exercise Log Session 4 (Week 8) Vision and Footwear/ Footcare Discuss the influence of vision on risk of falling and strategies on how to get around the community and reduce the risk of falling. Learn about the features of safe footwear and identify hazards. - Educational Concepts - Small Group discussion - Activity - Exercise Log Figure 1. Pre and Post Test 18 Figure 2. Pre and Post Test Figure 3. Pre and Post Test Figure 4. Pre and Post Test 19 Figure 5. Pre and Post Test 20 Wee k 1 DCE Stage (orientation, screening/evaluatio n, implementation, discontinuation, dissemination) Orientation Weekly Goal 1) Complete orientation by the end of the week Objectives Meet with site mentor, other site personnel, and the site participants to introduce myself and educate them on why I am here/what I will be doing for the 14 week Document supervision plan and update MOU with site mentor Screening/Evaluati on 2)Complete Needs Assessment by the end of the week Tasks Set up meetings with key personnel Create a talking point document for when I meet with various people Finalize MOU Ensure that all paperwork for orientation is complete Understand site environment/wh ere to work/dress code/ etc Determine who to meet with and Finalize what questions for questions to Needs ask and set Assessment up meeting Complete SWOT analysis Date comple te 1/13 21 2 Screening/Evaluat 1)Complete search ion of literature for program evaluation measures by midweek Establish Outcome assessment Review outcome assessments with site mentor & faculty mentor 1/20 Finalize Introduction 3 Screening/Evaluat ion 1) Complete outcome assessments Administer survey to participants Finalize Background 1/27 Review Complete Fall evidence for Risk best Theory/ assessments with Framework participants Update Background 4 Screening/ Evaluation 1) Finish outcome assessments Administer survey to participants. Complete Fall Risk with Participants Finalize Theory/ Framework Section 2/3 Write Project Design Update Theory/Framew ork Assess outcomes/ feedback from surveys 5 Implementation 1) Complete first workshop session Complete educational concepts Complete first session on introduction 2/10 22 Create small group discussions. to fall risks, exercise, and changing ones mind. Create handouts on walker safety, Creating a getting up after a schedule fall, and cane safety Create exercise logs Create activity Create attendance sheet 6 Implementation 2) Complete second workshop session Complete educational concepts Create small group discussions. Print out exercise logs Create handouts/resourc es. Complete second session on home safety 2/17 Provide a home safety checklist. Administer a mini quiz Create activity 7 Implementation 3) Complete third workshop session Complete educational concepts Create small group discussions. Print out exercise logs Complete third session on Vitamin D, calcium, and medication 2/24 23 Create handouts/resourc es on vitamin D, calcium, and medication management. Create activity 8 Implementation 4) Complete fourth workshop session Complete educational concepts Create small group discussions. Complete fourth session on vision/ footwear 3/3 Finalize Project Implementati on section 3/10 Print out exercise logs Create handouts/resourc es on vision/ footwear Create activity 9 Outcomes/ Discontinuation 1) Outcome assessments Administer post survey Research different resources for Flanner House Assess outcomes Write Project Outcomes and finish Project Implementation 10 Discontinuation 1) Outcomes/ Disseminati on Revisit Dissemination Plan Finalize Outcomes Section 3/17 24 11 Discontinuation 1) Discontinuat Continue to Work on ion finalize Scholarly Scholarly Report Report Work on Dissemination Plan 12 13 Discontinuation Dissemination Work on Disseminatio n Plan 1) Discontinuat Continue to Work on ion finalize Scholarly Scholarly Report Report 1) Disseminati on Work on Dissemination Plan Work on Disseminatio n Plan Dissemination Presentation Finalize summary, conclusion, and abstract sections Resource Packets 3/24 3/31 4/7 Present Disseminatio n Plan to Debra White and Gerald Ardis 14 Dissemination 1) Disseminati on Evaluation Finalize Scholarly Report Finalize Disseminatio n Plan Complete Final Evaluation with Debra White 4/14  ...

... AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 1 Enhancing Empowerment within Cancer Survivorship: A Symptom Management Program Darby Wildschuetz, OTS May 2023 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Katie Polo, DHS, OTR, CLT-LANA AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 2 Abstract The cancer population is a growing number as treatment evolves and advances. More individuals are facing the harsh side effects that come with such advances during treatment and years after (American Cancer Society, 2023). Many patients are also not aware of these side effects that can occur or how to manage them for maintaining their quality of life (Sae'd Abu ElKass et al., 2021). The purpose of this program was to develop a series of educational workshops addressing the commonly reported symptoms members at the Cancer Support Community of St. Louis experience: cancer-related fatigue, cancer-related cognitive impairments, and cancerrelated peripheral neuropathy. Data was collected through self-reported pre and post surveys to assess their understanding of the symptoms associated with the side effect and how to implement management strategies. The main findings indicated positive results, supporting educational workshops as an effective method on improving understanding of symptoms and management strategies within cancer survivorship for improved quality of life. Keywords: side effects, symptoms, cancer, fatigue, peripheral-neuropathy, cognition AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 3 Introduction Cancer survivorship can be defined as anyone diagnosed with cancer in any stage of the disease such as onset and active treatment or remission (Cancer.Net, 2022). Those in cancer survivorship experience many different symptoms and side effects throughout their cancer continuum. Many do not realize what these side effects are and how to best manage them. Ketterl et al. (2019) surveyed 872 cancer survivors on the effects of cancer treatment on their daily functions. The authors found that 76.3% of survivors felt that the lasting effects of cancer limited the type and duration of their instrumental activities of daily living. The most commonly unmet needs amongst this population included emotional support, fatigue, and being informed about benefits and side-effects of treatment (Wang et al., 2018). It is critical to identify these needs in order to provide the best client-centered care for prevention and management. Community centers like the Cancer Support Community of St. Louis (CSC) are working to fill this gap in cancer care. CSC is a nonprofit organization that serves those impacted by cancer in the Greater St. Louis area. Their members include friends and family of the individual facing cancer, those grieving the loss of a loved one to cancer, and those in cancer survivorship. The site offers various programs to this population such as support groups, counseling, art therapy, movement classes, and educational workshops. Targeting these symptoms and addressing the unmet needs these cancer survivors face through educational workshops could increase their awareness, self-management of symptoms, and overall quality of life. The primary aim of this project is to measure the effectiveness of an educational series through the lens of occupational therapy on learning about the symptoms and implementing coping strategies in order to increase participation/performance with daily tasks. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 4 Background More than 18 million individuals had a history of a cancer diagnosis in January 2022 according to the American Cancer Society. Over 1.9 million new cancer diagnoses are expected to occur in 2023 (American Cancer Society, 2023). With cancer cases rising, more and more individuals are facing the challenges that come with it and its treatment (What is cancer?, n.d.). The treatment for cancer includes surgery, chemotherapy, radiation, stem cell or bone marrow transplant, targeted therapy, or hormone therapy. Not only do cancer patients face symptoms from their disease, but they also face side effects from their treatment. Drott et al. (2022) examined the impact of symptoms on daily life and health of cancer patients and found that the uncertainty of the cancer experience played a large role in increased psychological distress and reduced quality of life. Rohilla et al. (2022) and Yale Medicine (2022) reported some of the most common side effects include pain, fatigue, anemia, hair loss, mouth problems, and nausea/vomiting. These effects may linger and cause long term effects on their participation in daily tasks (Faaij et al., 2022). Efverman (2023) completed a study on reported activity levels at baseline, during radiotherapy, and a month after. This author found that patients' physical, leisure, social, housework, and shopping activity levels decreased during radiotherapy and almost half of the patients activity levels were not restored a month after radiotherapy. Additionally, the author found that those whose prior activity levels did not return were also more likely to experience an anxious and depressed mood and a poor quality of life. A study by Sae'd Abu El-Kass et al. (2021) had similar findings and were most affected with instrumental activities like money management, shopping, housecleaning, and meal preparation. The authors also reported, More than half of the studied patients, 55.3%, had poor knowledge about cancer, side effects of chemotherapy, how to manage these side effects, and level of self-care efficacy. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 5 The authors continued to state throughout their article that many hospital staffing were too busy and overcrowded to properly educate these patients. Van Dyk & Ganz (2021) found that many women with breast cancer were not aware of the cognitive decline that could occur post treatment. In addition, they stated the National Comprehensive Cancer Network guidelines recommend increasing education on cognitive impairments as being important for this population. Henderson et al. (2019) found similar findings and that most women commonly discovered cognitive impairments through fellow survivors by word of mouth. Additionally, Savina & Zaydiner (2019) explored cancer-related fatigue and reported that, Many patients with fatigue do not discuss treatment options for this disorder with their oncologists; therefore, only a quarter of them receive any treatment recommendations. This is an important area to address through the lens of occupational therapy as it is also reported that CRF is a frequent barrier to ones participation in their daily activities. Community-based support services like the CSC STL are emerging to fill the gap in cancer care. The CSC serves various members in the community who have been impacted by cancer. They have connections with local hospitals and staff who refer patients and family members to this organization for support. CSC works with contracted licensed mental health professionals, art therapists, cooking instructors, fitness instructors and various volunteers to meet the needs of their members of all ages. They offer a young adult program as well to target ages 18-40 who are experiencing cancer at this stage of life. This age range tends to have a busier lifestyle as they often have young children, work full time, and are involved in extracurricular. CSC also offers a family program with activities geared towards both parents and kids to bring families together who are experiencing a similar situation. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 6 For this capstone project, a needs assessment was conducted through zoom interviews with the CSC program development staff which is made up of three social workers. It was discovered that educational presentations are popular amongst their members. They reported that these individuals enjoy feeling supported through discussions, expanding their knowledge, and collecting resources to utilize throughout their cancer survivorship. Although their educational presentations are popular and effective, they have never implemented an educational series, presenting topics that build on one another overtime. The staff identified topic areas for this educational program to meet the needs of their members are side effects most experienced by their members: cancer-related fatigue, cancer-related peripheral neuropathy, and cancer-related cognitive impairment. It is evident that there are physical and psychological needs not being met for cancer patients. Current research supports education on cancer and treatment itself for self-care of the side effects experienced with cancer, but less is known about education on management strategies and if they are effective from an occupational therapy perspective. Arunachalam et al. (2021) concluded that prior education on the disease and treatment has a positive correlation to self-care/management practice among participants. Grapp, et al. (2022) found similar support for online education to address psychosocial needs of cancer patients where the interventions could be helpful to implement these skills into everyday life. The aim of this DCE is to develop, implement, and evaluate an educational program on side effects and symptom management within cancer survivorship through the lens of occupational therapy. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 7 Theoretical Framework The KAWA model was utilized to guide this doctoral capstone experience. This model focuses on the flow of harmony in ones life, looking not just at the person at the center, but the interconnectedness of their environment, nature and their personal life experiences (Cole & Tufano, 2020). Applying this to the CSC member population, my project addressed various symptoms of cancer that these individuals experience. I provided education and strategies to help manage these and continue their lives flow. Figure 1 displays a visual reference of the model and frame of reference applied to my capstone. The upstream of the river represents the past, or life before a member was impacted by cancer. The downstream of the river represents their life after being impacted by cancer. Rocks in the river represent impediments to lifes flow, so these would be the educational series topics I addressed. Driftwood in the river symbolizes rescuing someone from the rocks and these would be the management strategies I educated members on to combat the rocks that are affecting them. The sides and bottom of the river represent one's context, places where they interact so for this population it would be CSC, where they connect with others impacted by cancer. Their context can also be their support system, their home environment, and the hospital they receive/d treatment from. Additionally, I utilized the Health Belief Model (HBM) to further guide the implementation of the DCE. This model focuses on the individuals beliefs and cues to action contributing to the main behavior change action. Ones beliefs of developing the effects and/or symptoms of cancer and the severity of it, such as it affecting their physical and mental health further, influences their course of action. Action also depends on ones perception of benefits to action such as gaining coping skills and the barriers to action like a lack of resources or time (Luque, n.d.). It was important to understand these factors to know how to effectively implement my DCE to benefit the members. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 8 Design & Implementation Based on the literature review and needs assessment conducted of this site, there was an unmet need of this cancer population. Many cancer patients are not aware of the symptoms that can occur or how to properly manage them (Abu El-Kass et al., 2021). Through collaboration with CSC STL, it was identified that this was also an unmet need of their members at their site and that educational programs are very popular amongst their members. This capstone used a pre-test post-test single group approach with self-reported surveys to examine the impact of an educational series on symptom management within the cancer population at CSC STL. Follow up surveys were sent out to those that attended the sessions to further assess their knowledge and implementation of the learned strategies for self-management. The surveys were optional, but encouraged, and anonymous to hide the identity of the participants. This method was chosen to evaluate if knowledge was gained on the side effects through the workshop, if they learned the strategies to manage them, and if they learned occupational therapys role within symptom management in cancer survivorship. The workshops were PowerPoint presentations compiled of research on the side effect, how it occurs and presents, management strategies and interactive activities with various discussion points throughout. The presentations were in collaboration with Dr. Katie Polo, my capstone faculty advisor, to have them professionally reviewed by an expert in the field. The primary long term goal of this program was to educate this population on various symptoms that can occur within cancer survivorship and provide them strategies for how to manage these from an occupational therapy perspective. Participants were recruited through various mediums to promote this series. An announcement was made in their education section of the quarterly newsletter for January-March 2023, with descriptions under each workshop for more information. Additionally, using their AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 9 member database, emails were sent about 2 weeks prior to the workshops with designed posters about the presentation. Targeted emails were sent to those who joined the Fitness in Survivorship'' class I was conducting as part of my capstone experience. Each workshop was 1.5 hours long and held via zoom due to the site still being hybrid with their immunocompromised members and the COVID-19 pandemic effects. I lead the workshops through education, guided personal experience discussions, and instructed various activities for self-management strategies for individuals to implement day-to-day. Participants were allowed to ask questions at the end or if they came up naturally during discussions. My contact information was provided at the end for follow-up appointments if participants were interested in continuing a discussion or learning more about how to implement these strategies into their daily routines. The first workshop was Cancer-Related Fatigue & Energy Conservation Techniques and it was a lunch and learn held during week 3. The second workshop was Coping with Cancer-Related Cognitive Impairments and it was held in the afternoon during the 7th week. The third workshop was Managing Cancer-Related Peripheral Neuropathy and it was held in the afternoon during the 10th week. The day after each workshop, a follow-up thank you email was sent to participants. Members would reply and I would respond to questions as needed. No members scheduled follow-up meetings. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 10 Outcomes For this capstone, these workshops were open to the members of the Cancer Support Community of St. Louis to register individually or for all three. Each workshop had varying member attendance. Within the workshops, a pre and post survey were collected anonymously to rate the effectiveness of knowledge and likeliness they would implement management strategies. These numbers also varied as to how many replied to each the pre and the post survey. No members reached out for follow-up appointments following the workshops. The first workshop in January of 2023 on Cancer-Related Fatigue had 14 members attend. Eight responded to the pre-survey (57%) and six (42%) responded to the post survey. Figure 1 displays the average rating of each question on knowledge on the topic, demonstrating positive results in the understanding of the side effects, management strategies and if they would implement them, and an understanding of what occupational therapy is and how it can help. Two members responded to a follow-up survey where they stated they had an increased awareness of their fatigue and began to incorporate exercise into their lifestyle again. The second workshop in February of 2023 on Cancer-Related Cognitive Impairments had 18 members attend. Nine responded to the pre-survey (50%) and six (33%) responded to the post survey. Figure 2 displays the positive results in understanding of the side effects, management strategies and if they would implement them, and an understanding of what occupational therapy is and how it can help for this topic. One member responded to the follow-up survey with 100% learned knowledge and implementing strategies. They also stated the presentation covered detailed information so they were able to better understand cancer-related cognitive impairments. Lastly, the third workshop in March of 2023 on Cancer-Related Peripheral Neuropathy had 22 members attend. 17 responded to the pre-survey (77%) and 10 responded to the post survey (45%). Figure 3 displays AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 11 the results, demonstrating positive outcomes in understanding the side effects, management strategies and if they would implement them, and an understanding of what occupational therapy is and how it can help. Two members responded to the follow-up survey with 100% learned knowledge and implementing strategies. One member mentioned a technique that was not helpful to them was the frozen gloves during chemotherapy and another member expressed interest in trying out other management strategies mentioned in the workshop. Every week, a gentle fitness class was implemented and promoted to all of the CSC members as part of the capstone experience. This program was also highlighted in the workshop presentations as a management technique and overall health improvement. The class enrollment ranged from 2-7 members weekly on both zoom and/or live in person. Formative assessment was performed after each class to ask members for feedback. Many members reported they felt good afterwards and were enjoying the class. Members did not provide any constructive feedback, although it was suggested to record the classes for later viewing or to partake in this class more than once a week. This feedback was taken into consideration and workout videos were made for the organization to promote as a resource on their website which was received with great enthusiasm. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 12 Summary Those impacted by cancer are growing in number, as well as the physical, emotional and psychosocial tolls they face. The cancer journey they experience impacts their daily participation and performance in everyday tasks. Side effects like fatigue, cognitive impairments, and peripheral neuropathy all affect their quality of life. This population has minimal knowledge on these side effects that can occur and how they can impact them as well as how to manage them (Sae'd Abu El-Kass et al., 2021). It is evident that education on these topics demonstrates improved self-care/management practices, but there is still a lack of understanding as to how this education is best presented for carryover to improve ones quality of life (Arunachalam et al., 2021). Once this gap was identified, a needs assessment for the Cancer Support Community St. Louis discovered a desire for more education on these popular symptom areas. A program was developed to specifically address education on symptoms and management strategies for these in order to increase understanding of them and self-manage them to be able to participate in daily tasks without their compromise. Three workshops were provided on fatigue, cognitive impairments, and peripheral neuropathy. Members were asked to complete a pre and post survey around the workshop. The results identified that many members did not understand these symptoms nor how to manage them. From the workshops, members gained more understanding of the factors that went into each side effect, the symptoms that can occur, how to manage them, and occupational therapys role in management as well. Members reported an increase in confidence for self-advocacy and shared valuable resources with one another, gaining support from others and not feeling alone in their cancer journey. An area of improvement for the project could be sending out materials prior to the workshop so members could take notes and develop questions beforehand. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 13 Conclusion The primary aim of this program was to educate members of a community-based cancer support center (CSC STL) on the side effects that can occur in cancer survivorship and how to manage them through strategies. Through this program, members not only learned more about management strategies for symptoms, but also had guided discussions about their symptoms with other individuals experiencing them. This brought a sense of feeling more understood and also learning about resources others had tried. This program helped CSC STL members gain more understanding of three common side effects that can occur as well as all of the symptoms from them. By learning about the factors that play a role in these side effects, identifying symptoms that can occur, and management strategies, members gained more knowledge on how to selfmanage these symptoms in order to continue or return to participating in their daily activities. These workshops were very highly attended and well-liked by the feedback, further demonstrating the importance and need of these educational presentations. The CSC STL will continue to hold educational workshops for their members with this new awareness of how liked they are, especially when held by medical professionals. In the realm of occupational therapy, cancer care is an emerging practice area with a growing need as demonstrated by the lack of knowledge these members reported prior to the educational workshops. Although occupational therapists have a defined role in cancer care, there is still limited research on occupational therapy in cancer care from a rehabilitation standpoint for management and chronic care now. Many studies focus on certain stages rather than the full continuum of care within survivorship. Occupational therapy can address areas such as fatigue, neuropathy, intimacy issues, pain, cognitive impairments and many more. Further development of these community-based programs are needed to continue to address these gaps in care for this population. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 14 References Abu El-Kass, S., Ragheb, M. M., Hamed, S. M., Turkman, A. M., & Zaki, A. T. (2021). Needs and self-care efficacy for cancer patients suffering from side effects of chemotherapy. Journal of Oncology, 2021, 19. https://doi.org/10.1155/2021/8880366 American Cancer Society. (2023). Cancer facts & figures 2023. https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/2023cancer-facts-figures.html Arunachalam, S. S., Shetty, A. P., Panniyadi, N., Meena, C., Kumari, J., Rani, B., Das, P., & Kumari, S. (2021). Study on knowledge of Chemotherapy's adverse effects and their selfcare ability to manage - the cancer survivors impact. Clinical Epidemiology and Global Health, 11, 100765. https://doi.org/10.1016/j.cegh.2021.100765 Cancer.Net. What is cancer survivorship? (2022, June 30). https://www.cancer.net/survivorship/what-cancer-survivorship Cole, M. & Tufano, R. (2020). Applied theories in occupational therapy: A practical approach. (2nd Ed.). Thorofare, N.J.: SLACK Inc Drott, J., Bjrnsson, B., Sandstrm, P., & Berter, C. (2022). Experiences of symptoms and impact on daily life and health in hepatocellular carcinoma patients. Cancer Nursing, 45(6), 430437. https://doi.org/10.1097/ncc.0000000000001044 Efverman A. (2023). Physical, Leisure, and Daily Living Activities in Patients Before, During, and After Radiotherapy for Cancer: Which Patients Need Support in Activities?. Cancer AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 15 nursing, 10.1097/NCC.0000000000001187. Advance online publication. https://doi.org/10.1097/NCC.0000000000001187 Faaij, M., Schoormans, D., & Pearce, A. (2022). Work, daily activities and leisure after cancer. European Journal of Cancer Care, 31(4). https://doi.org/10.1111/ecc.13596 Grapp, M., Rosenberger, F., Hemlein, E., Klein, E., Friederich, H.-C., & Maatouk, I. (2022). Acceptability and Feasibility of a Guided Biopsychosocial Online Intervention for Cancer Patients Undergoing Chemotherapy. Journal of Cancer Education : The Official Journal of the American Association for Cancer Education, 37(1), 102110. https://doi.org/10.1007/s13187-020-01792-4 Henderson, F. M., Cross, A. J., & Baraniak, A. R. (2019). A new normal with chemobrain: Experiences of the impact of chemotherapy-related cognitive deficits in long-term breast cancer survivors. Health Psychology Open, 6(1), 2055102919832234. https://doi.org/10.1177/2055102919832234 Kessels, E., Husson, O., & van der Feltz-Cornelis, C. M. (2018). The effect of exercise on cancer-related fatigue in cancer survivors: a systematic review and meta-analysis. Neuropsychiatric disease and treatment, 14, 479494. https://doi.org/10.2147/NDT.S150464 Luque, M. (n.d.). Behavior change theory: Help clients stick with their program. NASM. https://blog.nasm.org/behavior-change-and-motivation/behavior-change-science Rohilla, K. K., Batra, A., & Kalyani, C. V. (2020). Incidence and severity of self-reported chemotherapy side-effects in patients with hematolymphoid malignancies: A cross- AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 16 sectional study. Cancer Research, Statistics, and Treatment, 3(4), 736. https://doi.org/10.4103/crst.crst_87_20 Sae'd Abu El-Kass, Marwa M. Ragheb, Safaa' M. Hamed, Anas M. Turkman, Azhar T. Zaki. (2021). Needs and Self-Care Efficacy for Cancer Patients Suffering from Side Effects of Chemotherapy. Journal of Oncology, vol. 2021, Article ID 8880366, 9 pages, 2021. https://doi.org/10.1155/2021/8880366 Savina, S., & Zaydiner, B. (2019). Cancer-Related Fatigue: Some Clinical Aspects. Asia-Pacific Journal of Oncology Nursing, 6(1), 79. https://doi.org/10.4103/apjon.apjon_45_18 Van Dyk, K., & Ganz, P. A. (2021). Cancer-Related Cognitive Impairment in Patients With a History of Breast Cancer. JAMA, 326(17), 17361737. https://doi.org/10.1001/jama.2021.13309 Wang, T., Molassiotis, A., Chung, B. P., & Tan, J.-Y. (2018). Unmet care needs of advanced cancer patients and their informal caregivers: A systematic review. BMC Palliative Care, 17(1). https://doi.org/10.1186/s12904-018-0346-9 Yale Medicine. (2022, February 4). Side effects of cancer treatment. Yale Medicine. Retrieved January 30, 2023, from https://www.yalemedicine.org/conditions/side-effects-cancertreatment AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 17 Figure 1 Theoretical Framework AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 18 Figure 2 January 2023 - Cancer Related Fatigue & Energy Conservation Techniques Figure 3 February 2023- Coping with Cancer-Related Cognitive Impairments Figure 4 March 2023 - Managing Cancer-Related Peripheral Neuropathy AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 19 Appendix A DCE Weekly Planning Guide Week 1 DCE Stage Weekly Goal Orientation 1) Complete orientation by the end of the week 2) Complete Needs Assessment by the end of the week 3) Attend other CSC programs by the end of the week 2 Screening/ Evaluation 1) Complete search of literature for program evaluation measures by midweek 2) Prepare for first workshop Objectives Tasks Meet with site mentor, other staff to introduce myself and educate them on why I am here/what I will be doing for the 14 weeks Set up meeting with site mentor and advisor Discuss supervision plan and update MOU with site mentor Understand site environment/where to work/dress code/etc Update goals for MOU Determine who to meet with and what questions to ask and set up meeting Review other programs and attend to get acquainted with other facilitators and members Review calendar and register for other CSC programs, attend class and introduce myself Establish Outcome assessment Review outcome assessments with site mentor & faculty mentor Review presentation with site mentor and advisor Join young adult cooking class to get acquainted with these 1/10 1/12 Ensure that all paperwork for orientation is complete Finalize questions for Needs Assessment Finalize workshop presentation Date Complete 1/9 Set up meeting with site mentor and advisor to review presentation Register for cooking class and introduce self to instructor and members 1/18 1/20 AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 3 presentation by end of the week members and the cooking facilitator 3) Participate in young adult cooking class in the middle of the week Finalize MOU 3) Turn in MOU by 1/20 Implementation 1) Turn in Introduction draft by 1/23 Finalize Introduction draft Finalize notes and surveys for first workshop 2) Present first workshop on 1/24 Meet with site mentor and follow up with members 3) Review/receive feedback on workshop by end of week 4 Implementation 1) Turn in Background draft by 1/30 2) Respond to email responses from first Finalize Background draft Connect with members and provide answers or resources to their follow-up questions Layout the next workshop powerpoint 20 Meet with mentor to finalize MOU and turn in with signatures Complete research on the cancer population and overview of project for Introduction draft 1/23 Write out notes for more information on slides, copy survey links 1/27 1/24 Ensure zoom access and screen sharing for workshop Schedule meeting with site mentor for feedback Send follow up email to participants Complete research on CSC and member population and need for project 1/30 2/1 Complete research on information 2/3 or resources for members Reply to member emails AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT workshop by mid-week 5 3) Begin working on next workshop presentation by the end of the week Implementation 1) Turn in Design and Implementation draft 2/6 2) Complete half of next workshop presentation by the end of the week 21 Create next workshop powerpoint and complete introduction slides Understand terminology for data collection Research proper terminology for survey collection Draft up definitions, causes, and symptoms for next workshop Research definitions, causes and symptoms for next workshop Draft up app and technology slides for management strategies 2/6 2/10 Research apps and technology for management strategies 3) Begin laying out management strategy slides by the end of the week 6 Implementation 1) Finalize second presentation by the end of the week 2) Contact young adult members Finalize management strategies and support resources for presentation Finalize workout for class Contact members to understand their current level of fitness and Research other management strategies and support within community for further medical care Get contact list of young adult members from staff member 2/15 2/17 AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 7 signed up for my fitness pop up class by midweek Implementation 1) Present second workshop on 2/21 2) Lead young adult fitness pop up class on 2/22 3) Complete midterm evaluation by the end of the week remind them about the pop up class Email/call young adult members Finalize notes and surveys for workshop Write out notes for more information on slides, copy survey links 2/21 Research and print off warm up and cool down exercises and resources for young adult class 2/24 Provide resources to fitness class participants Follow up with workshop and fitness class participants Discuss if the workshops presented and fitness classes are meeting the needs of CSC Discuss positive and constructive feedback 8 Implementation 1) Begin third presentation by mid-week 2) Begin Outcomes draft by mid-week 22 Create introductory and definition slides Connect with health fair attendees and spread awareness of CSC Obtain at least 3 new member 3) Represent CSC contact information at health fair on 3/1 and 3/2 2/22 Get contact information from zoom and live attendance, send follow up email and resources to participants Set up meeting with site mentor for midterm evaluation and second workshop feedback Create third powerpoint presentation with introductory slides Research definitions, causes, and symptoms Gather supplies for health fair and directions/parking for health fair Organize elevator speech of CSC and my role to increase awareness 3/1 3/2 AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 9 Implementation 1) Complete third presentation by the end of the week 2) Create visual graph for the Outcomes draft by the end of the week 10 Implementation 1) Turn in Outcomes draft by 3/13 Implement Ohio State resources into powerpoint and finalize management strategies Research Ohio State management techniques further and other strategies for workshop Prepare resources to email to members after workshop presentation Scan handouts and prepare to email members Finalize notes for workshop Write out slides and further talking points for information Finalize current data for analyzing Research Qualtrics for creating visuals of data Finalize Outcomes draft Finalize notes and surveys for third presentation 2) Present third workshop on 3/14 Follow-up with workshop participants 11 Implementation 1) Turn in Dissemination Plan on 3/20 2) Complete final graphs for 23 Enter in data on Qualtrics and create graphs Format graphs correctly for finalizing the Outcomes draft Write out notes for more information on slides, copy survey links 3/10 3/13 3/14 Schedule meeting with site mentor for workshop feedback Finalize dissemination plan Send follow up email to participants Research dissemination methods Finalize graphs for analyzing survey data Reformat surveys on Qualtrics and recreate graphs 3/20 3/24 AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 12 analyzing data by the end of the week Implementation 1) Create new graphs for ease of understanding by the end of the week 2) Begin creating educational handouts by the end of the week 13 3) Begin laying out fitness class for online recordings by the end of the week Discontinuation 1) Begin creating dissemination materials by the end of the week 2) Begin working on Abstract, Summary, and Conclusion drafts by the end of the week 3) Complete fitness class Format graphs directly from Google Forms Layout educational handouts of each workshop for online member resources Create a warm, full body workout, and cool down layout for fitness class recordings 24 Carry over current data from surveys into excel and create graphs 3/31 Access Canva and transfer/reduce workshop information Research more on fitness and workout routines within cancer survivorship Type up exercises for each video recording Layout workshop information for handouts during dissemination Access Canva, write out each program and its information: time, attendees, survey results Continue editing educational handouts Review spelling and formatting for educational handouts on Canva Outline Abstract, Summary and Conclusion drafts Refer back to introduction and background for summary draft Finalize warm up, full body workout, and cool down After summary and conclusion exercises for recordings drafts, outline Abstract draft 4/7 AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 14 Dissemination layout for online recordings by the end of the week 1) Turn in Abstract, Summary and Conclusion drafts on 4/10 2) Disseminate to site at Thursday staff meeting 3) Provide educational handouts at Thursday staff meeting 4) Record fitness videos by the end of the week 5) Complete final evaluation by 4/14 Finalize Abstract, Summary and Conclusion drafts Finalize graphs for visual data analysis in excel Finalize educational handouts on Canva for dissemination to provide resources for members online Complete write up of workout routines for recordings Discuss if the workshops and fitness classes met the needs of CSC Discuss positive and constructive feedback 25 Review and edit order of exercises to ensure breaks and overall flow during recordings Ensure correct formatting for Abstract, Summary and Conclusion drafts and turn in 4/10 4/13 Ensure all data is entered on excel 4/14 and graphs are formatted correctly Print handouts of capstone project and outcomes from Canva to present Set up time/meeting to record on zoom for online resources Record workouts Schedule meeting for final evaluation with site mentor  ...