Co-creating a mentored research pathway for people with disabilities
John Abbate, MSW1 and Susan Magasi, PhD, FACRM2
1Shirley Ryan AbilityLab, University of Illinois Chicago
2University of Illinois Chicago
Keywords: research capacity building, community-engaged research, disability inclusion
Background/Significance: There is a critical need for greater inclusion of people with disabilities in healthcare and rehabilitation research, not just as participants but as investigators and leaders (Moore et al., 2016). Yet, the educational pipeline and opportunities available to members of the cross-disability community are limited by structural ableism and social determinants of health. Furthermore, far too many research training programs fail to deliver on their promise of opening sustained research opportunities for their trainees. There is a critical need for capacity-building programs that systematically foster opportunities for people with disabilities to build the knowledge, skills, and abilities to engage in research as full and equal partners while intentionally creating an infrastructure that enables people to use those skills in meaningful ways over time.
Community Group: This research was founded in collaboration with cancer survivorship and cross-disability community-based organizations. Over time, the focus progressively shifted from community-based organizations as key collaborators to working directly with grassroots community members as partners and co-leaders.
Partnership Innovations and approaches: A case study approach was used to trace the research trajectory of one disabled citizen scientist across a series of federally funded, community-based participatory research studies as he built his research capacity and resumé over time, while simultaneously showcasing the significant contributions these projects made to advancing the team’s research and education objectives. Additionally, three partnership innovations that were developed to advance research while simultaneously building community capacity were highlighted, including 1) the co-creation of a mentored research training program (ILL Healthcare for People Disabilities Leaders Program), 2) knowledge translation collaboratives, and 3) survivor/navigator scientist approaches that integrate people with disabilities as co-creators and interventionists for self-management and peer support interventions (Magasi et al, 2019; Adler et al, 2024).
Future directions/Impact/Outcomes: The processes and practices described in this presentation can challenge and guide the field of occupational therapy, generally, and researchers, in particular, to consider how they are using their power and privilege to foster meaningful engagement and sustain research relationships that yield a mutual benefit for people with lived experience while promoting scientific discovery and the co-creation of community-relevant evidence-informed interventions.
References:
Adler, R. F., Baez, K., Delgado, M., Raudales-Reyes, D., Sotelo, J., Shan, J., Zhou, K. Z., & Magasi, S. (2024). mENTER: Co-designing a mHealth peer navigator intervention for people with disabilities. EmphathiCH 2024. https://doi.org/10.1145/3661790.3661797
Magasi, S., Reis, J. P., Wilson, T., Rosen, A., Ferlin, A., & VanPuymbrouck, L. (2019). ScreenABLE – Breast cancer screening among women with disabilities from the community identified challenges to community-based programs. Progress in Community Health Partnerships, 13(Special Issue), 61–69. https://doi.org/10.1353/cpr.2019.0039
Moore, C. L., Aref, F., Manyibe, E. O., & Davis, E. (2016). Minority entity disability, health, independent living, and rehabilitation research productivity facilitators: A review and synthesis of the literature and policy. Rehabilitation Counseling Bulletin, 59(2), 94–107. https://doi.org/10.1177/0034355214568527.
Funding: Funding support was provided by 90RTCP005-01-00; U54CA202995/U54CA202997/U54CA203000; the Patient-Centered Outcomes Research Institute, Pipeline to Proposal Award; the UIC Institute for Policy and Civic Engagement.
Using rapid-cycle feedback to co-design an occupation-centered “radical hospitality” intervention in a transitional housing site
Joy Agner, PhD, OTR/L1, Naomi Teragawa Wainwright2, Heldevam Pereira, MRes3, Kerry Morrison4, Evangeline Lee5, Jon Owyang6 and Carolyn Friend7
1University of Southern California
2Program Coordinator, Heart Forward LA
3PhD Student, University of Southern California
4Founder and Project Director, Heart Forward LA
5Associate Director, Heart Forward LA
6Board Member and Master Gardener, Heart Forward LA
7Volunteer and Master Gardener, Heart Forward LA
Keywords: Community partnerships; homelessness; intervention development.
Background/Significance: People with serious mental illness face pervasive stigma, discrimination, and marginalization that results in reduced occupational choice, low community integration, and staggering disparities in isolation, health outcomes, and early mortality (Jun et al., 2020; Liu et al., 2017). Novel, purpose-centered, community-based mental health treatment strategies are needed to promote holistic recovery from mental illness through power sharing, meaningful engagement in activity, and development of supportive relationships (Nagata et al., 2020).
Community Group: Residents and staff of The Mark Twain, a transitional housing site; staff and volunteers from Heart Forward LA, a Los Angeles based nonprofit that aims to “transform the American mental health system through radical hospitality.”
Partnership Innovations and approaches: Heart Forward LA and researchers from the Health Equity Action Lab at the University of Southern California share their unique perspectives on how rapid-cycle feedback ethnography supported the co-design and refinement of a novel, occupation-centered “radical hospitality” intervention in a transitional housing site. This intervention utilized gardening, arts-based, and food-based activities to support purpose, power sharing, destigmatization, and meaningful relationships among people with serious mental illness. First, we describe the development of this partnership, our shared vision, unique roles and expertise, and some preliminary capacity building efforts to set the stage for this work. Next, we describe how our methodology was chosen, and its relevance to our immediate goals and this phase of this research process. Finally, we will detail how we use rapid-cycle feedback and ethnography to shape intervention design and development. Through weekly meetings, participant observation, collection and rapid analysis of ethnographic field notes, we: 1) planned intervention activities, 2) clarified core components of the intervention theory of change, 3) identified proximal and distal intervention outcomes, 4) refined practical conceptualization of the intervention dose, reach, and cost, 5) discussed ethical, theoretical, and personal tensions that arose, and 5) conceptualized training necessary to prepare future interventionists and intervention scaling.
Future directions/Impact/Outcomes: We anticipate this occupation-centered, community-based intervention will have near-term impact on residents’ sense of mattering, number and quality of relationships, sense of empowerment, and quality of life, while setting the stage for scaling through long-term, collaborative research. Impact will be assessed and refined through observational field notes paired with interviews with residents and staff at the transitional housing site. This collaborative design process supports the National Institute of Mental Health’s goal of increasing availability of “deployment-ready” interventions as it is consistently informed by real-world constraints and supports faced by researchers, community members, and practitioners. The next step in this work is to quantitatively test our intervention protocol and theory of change in a comparative pilot study followed by intervention manual refinement. We anticipate this manualization and preliminary data will support a future fully powered randomized controlled trial. Throughout this process, we will carry out consistent dissemination to both academic and community-based audiences, facilitated by the fact that we are naturally embedded in these communities.
References:
Jun, W. H., & Choi, E. J. (2020). The relationship between community integration and mental health recovery in people with mental health issues living in the community: A quantitative study. Journal of Psychiatric and Mental Health Nursing, 27(3), 296–307. https://doi.org/10.1111/jpm.12578
Liu, N. H., Daumit, G. L., Dua, T., Aquila, R., Charlson, F., Cuijpers, P., Druss, B., Dudek, K., Freeman, M., Fujii, C., Gaebel, W., Hegerl, U., Levav, I., Munk Laursen, T., Ma, H., Maj, M., Elena Medina-Mora, M., Nordentoft, M., Prabhakaran, D., . . . Saxena, S. (2017). Excess mortality in persons with severe mental disorders: A multilevel intervention framework and priorities for clinical practice, policy and research agendas. World Psychiatry: Official Journal of the World Psychiatric Association (WPA), 16(1), 30–40. https://doi.org/10.1002/wps.20384
Nagata, S., Townley, G., Brusilovskiy, E., & Salzer, M. S. (2020). Community Participation Differences Between Adults with or without Serious Mental Illness. Psychiatric Services, 71(11), 1191–1194. https://doi.org/10.1176/appi.ps.201900608
Funding: Dr. Agner’s time on this research was funded in part by the National Institute of Mental Health (NIMH) under grant number 1K01MH136343-01A1.
Memory Cafe Meets CarePLaCe: A Collaboration to Engage Individuals with Dementia and Empower Care Partners
Brandi L. Buchanan, OTD, OTR/L, CLA1, Lori Reynolds, PhD, OT/L1, Elton Bordenave, PhD, M Ed1 and Pablo Flores, BS2
1Center for Resilience in Aging at A.T. Still University
2Memory Café Program Manager, City of Phoenix
Keywords: Dementia, caregivers/care partners, memory cafe
Background/Significance: In 2024, as reported by the Alzheimer’s Association (2024), one in three older adults die of Alzheimer’s disease or another dementia. Before someone dies of dementia they require years of care by family members and friends who provide 347 billion dollars of unpaid care annually . Eleven million caregivers support someone with dementia each year (Alzheimer’s Association, 2024). These caregivers do not feel they have the education and training to effectively complete their role and are unsure of services that could benefit them (Bell, Whitney & Young, 2019). Traditional practice and reimbursement restricts addressing caregiver needs in medical settings. People trained to help navigate dementia diagnoses, including health care providers, are needed in community settings to facilitate greater care and support for those living with dementia (Anthonisen, Luke, MacNeill, MacNeill, Goudreau & Doucet, 2023). Eleven percent of adults over 65 in Arizona have Alzheimer’s Disease. This number is expected to grow as older adults move into AZ at high rates. Timelines vary based on the type of dementia, but average life expectancies after a dementia diagnosis range from three to eleven years. People with dementia are encouraged to remain active, to engage socially and to try new things, as a way of combating the progress of the disease. Memory café’s provide opportunities for engagement and socialization, and provide support to care partners.
Community Group: The City of Phoenix became a dementia friendly city in 2020 and offered virtual memory café’s that year. In person memory cafes were added in 2022. Currently there are five memory café locations in Phoenix senior centers. The Center for Resilience in Aging at A.T. Still University (ATSU) has partnered with the City of Phoenix for many years as students have provided fall prevention classes throughout the Phoenix valley. Many older adult participants in those classes appeared stressed by caregiving roles. Recognizing the large numbers of burdened care partners in the community, the ATSU Center for Resilience in Aging developed CarePLaCe: Plan to care, Learn to care, and Connect to care. The program includes an initial evaluation, a home safety assessment, and the development of an individualized Care Plan which includes educational/skills training for the caregiver. CarePLaCe clinicians (OT’s) use a variety of functional measures to assess the person with dementia so the Care Plan includes strategies, suggestions and other information to help the care partner understand their loved one’s functional abilities.
Partnership Innovations and Approaches: The City of Phoenix and ATSU established a collaboration, funded by The American Rescue Plan Act of 2021, to bring the Memory Café program together with CarePLaCe to create comprehensive services and access for individuals with dementia and their care partners. The program is unique as it brings health care providers into local senior centers, with Memory Café staff and CarePLaCe staff working cohesively.
Future Directions/Impact/Outcomes: CarePLaCe is currently conducting research on program efficacy. Participant feedback thus far has been positive for the collaboration of Memory Café and CarePLaCe. The research team and City of Phoenix partners are currently applying for future funding to continue the collaboration and increase the number of locations where services are provided.
References
Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimer’s Dement 2024; 20(5). https://www.alz.org/getmedia/76e51bb6-c003-4d84-8019-e0779d8c4e8d/alzheimers-facts-and-figures.pdf
Anthonisen, G., Luke, A., MacNeill, L., MacNeill, A. L., Goudreau, A., & Doucet, S. (2023). Patient navigation programs for people with dementia, their caregivers, and members of the care team: a scoping review. JBI evidence synthesis, 21(2), 281–325. https://doi.org/10.11124/JBIES-22-00024
Bell, J. F., Whitney, R. L., & Young, H. M. (2019). Family caregiving in serious illness in the United States: Recommendations to support an invisible workforce. Journal of the American Geriatrics Society, 67(S2), S451–S456. https://doi.org/10.1111/jgs.15820
Funding: City of Phoenix/CarePLaCe Collaboration (ATSU), $400,000, American Rescue Plan Act of 2021 (ARPA) Funds, The Effectiveness of a Community-Based Program for Improving Quality of Life of Care Partners of Older Adults with Chronic Conditions.
Enhancing Care for Clients with Chronic Neurological Conditions: QI Initiative within MedStar-NRH Upper Extremity Group
Carolin K. Capurro Perez, OTS1, Sarah Doerrer, PhD, OTR/L, CHT, CLT1 and Harsh Thakkar1
1George Washington University
2Community Outreach Manager, Therapeutic Recreation, MedStar NRH
Keywords: Community engagement, quality improvement, chronic neurological conditions
Background: Individuals with chronic neurological disorders often face challenges that hinder community participation, leading to isolation and depression (Isidoro-Cabanas et al., 2023). To address these challenges, occupational therapists at MedStar NRH developed the FUNctional Upper Extremity Class to help participants re-engage with their communities.
Community Engagement Approach: This project adopts a community-engaged approach, actively involving participants throughout the research process. Participants provide ongoing feedback during the development and implementation of the activity book, ensuring that their needs and preferences are prioritized. Collaboration with OTs allows the project to adapt to changing needs, ultimately improving care quality and fostering community engagement.
Specific Aims: This project aims to enhance satisfaction levels among participants and OTs by introducing a tailored activity book into the FUNctional Upper Extremity Class.
Methods: This quality improvement (QI) project utilizes the Kaizen methodology to foster continuous improvement in community engagement and satisfaction (Kaizen Institute, n.d.). The process begins with identifying the problem through collaboration between OTs and participants. The next step involves analyzing the current process to identify any barriers to satisfaction. Based on this analysis, a tailored activity book is proposed as a potential solution.
Results: A needs assessment, which included interviews with OTs and a participant focus group, revealed that participants are highly motivated and have a clear understanding of their limitations and capabilities. Their feedback played a key role in shaping the development of the activity book. OTs also offered valuable insights, helping to design a book that incorporates both structured lessons and enjoyable activities, tailored to the participants’ needs. The next steps involve drafting the activity book, implementing it in the class, collecting feedback, and analyzing the data.
Discussion: This project highlights the value of community-based interventions for individuals with chronic neurological conditions. Such programs have been shown to improve self-efficacy, satisfaction, and participation (Warner et al., 2019). By incorporating feedback from both participants and OTs, the project aims to improve engagement and satisfaction outcomes. The Kaizen methodology drives continuous improvement, while the activity book serves as a practical tool to enhance self-efficacy and community participation.
References:
Kaizen Institute. (n.d.). Dive into the Kaizen Methodology. https://kaizen.com/what-is-kaizen/
Isodoro-Cabanas, E., Soto-Rodriguez, F. J., Morales-Rodriguez, F. M., & Perez-Marmol, J. M. (2023). Benefits of Adaptive Sports on Physical and Mental Quality of Life in People with Physical Disabilities: A Meta-Analysis. Healthcare (Basel, Switzerland), 11(18), 2480. https://doi.org/10.3390/healthcare11182480
Warner, G., Packer, T. L., Kervin, E., Sibbald, K., & Audulv, A. (2019). A systematic review examining whether community-based self-management programs for older adults with chronic conditions actively engage participants and teach them patient-oriented self-management strategies. Patient Education and Counseling, 102(12), 2162–2182. https://doi.org/10.1016/j.pec.2019.07.002
Funding: No funding reported
Strategies for Developing Successful Community Partnerships for Sickle Cell Disease in St. Louis
Catherine R. Hoyt, PhD, OTD, OTR/L, FAOTA1, Rosemary Britts, MBA2, Hunter Moore, BS1, Maya Caldwell3, Jessica Kersey, PhD, OTR/L1 and Allison A. King, MD, PhD, MPH1
1Washington University School of Medicine
2Executive Director, Sickle Cell Association- St. Louis
3Washington University in St. Louis
Keywords: sickle cell disease, qualitative research, child development
Background: Sickle cell disease (SCD) is the most common genetic blood disorder among children in the United States, affecting approximately 100,000 individuals and 2,000 newborns annually, the majority of whom identify as Black or African American. Many children with SCD experience significant lifelong disabilities, which are exacerbated by structural racism limiting access to social services and healthcare. Patients often express frustration with healthcare providers’ lack of knowledge about SCD and the misunderstanding or undertreatment of their symptoms (Hoyt, Erickson, et al., 2023). Despite recommendations from the American Society of Hematology and the American Academy of Pediatrics, early intervention (EI) services for children aged 0-3 years are underutilized (Hoyt, Heitzer, et al., 2023), with as few as 2% of eligible children receiving support. Black children are identified as eligible for EI later than White children, further delaying the initiation of services due to less frequent routine screening. Our prior work found that out of 43 infants and toddlers with SCD, half had a clinically significant developmental delay, yet none had received therapeutic intervention. We completed this qualitative project to understand how we could build stronger academic and community partnerships to improve the health of children with SCD.
Community-Engagement Approach: We conducted focus groups and interviews with pediatricians from a local federally qualified health center, providers from local sickle cell clinics, and leaders in the sickle cell community to understand how we could build stronger academic and community partnerships to improve the health of children with SCD.
Specific Aims: This study aimed to identify barriers and facilitators to developing successful community-academic partnerships to enhance care for children with SCD.
Methods: Semi-structured interviews were conducted using an appreciative inquiry approach with the Exploration, Preparation, Implementation, and Sustainment (EPIS) Framework (Moullin et al., 2019). Audio recordings were transcribed, de-identified, and reviewed for accuracy. Demographic information was summarized using descriptive statistics. Grounded theory was used to analyze qualitative data using NVivo software, version 20.
Results: Preliminary findings suggest that providers are eager to engage in regular meetings to connect with other providers, learn new information, and provide insight on program development. However, providers and leaders in the sickle cell community have limited time and resources to extend to new projects, and many expressed interest in participating if someone else would lead and coordinate meeting logistics.
Discussion: Developing successful community-academic partnerships requires a careful balance of providing support through leadership and coordination while ensuring that community voices are adequately represented at every stage. Our findings highlight the need for dedicated resources to facilitate collaboration and improve care for children with SCD.
References:
Hoyt, C. R., Erickson, J., Luo, L., Varughese, T., Han, T., Housten, A. J., & King, A. A. (2023). Perspectives on How to Implement Developmental Screening and Intervention for Children With Sickle Cell Disease. Journal of Early Intervention, 10538151231159637. https://doi.org/10.1177/10538151231159637
Hoyt, C. R., Heitzer, A. M., & Hardy, S. J. (2023). Commentary on the ASH 2020 guidelines on cognitive screening and intervention in sickle cell disease. Blood Advances, 7(14), 3680-3682. https://doi.org/10.1182/bloodadvances.2023009851
Moullin, J. C., Dickson, K. S., Stadnick, N. A., Rabin, B., & Aarons, G. A. (2019). Systematic review of the exploration, preparation, implementation, sustainment (EPIS) framework. Implementation Science, 14(1), 1-16. https://doi.org/10.1186/s13012-018-0842-6
Funding: This project was supported by the Missouri Foundation for Health Opportunity Fund (CH) National Heart, Lung, and Blood Institute of the National Institutes of Health K23HL161328 (CH) and K24HL148305 (AK).
Using a Patient-Driven Rural T1D Research Agenda to Create and Test Novel Assessments and Interventions
Vanessa D. Jewell, PhD, OTR/L, FAOTA1, Benjamin Feiten, OTD, OTR/L2, Amy Thompson, OTR/L2 Julia Shin, EdD, OTR/L3, Emily Knezevich, PharmD, CDECS3 Kameron Dostal4, Melody Schwantes, PhD; MT-BC5, Amy A. Abbott, PhD, RN3 and Yongyue Qi, PhD3
1University of North Carolina at Chapel Hill
2Community Partner; Diabetes Research and Wellness Collaborative Patient-Centered Steering Committee
3Creighton University
4Community Partner; Diabetes Research and Wellness Collaborative Patient-Centered Steering Committee
5Appalachian State University
Keywords: type 1 diabetes; rural health; community engagement
Background/Significance: It is common for caregivers to report feelings of distress, anger, grief, and anxiety after their child’s type 1 diabetes (T1D) diagnosis due to the sudden disruption in the family’s routines, lifestyle, and fear of future complications (Jewell et al., 2024). Caregivers of children with T1D report that they may not receive sufficient support to manage their child’s health management routines (Jewell et al., 2022). Therefore, it is critical that those living with T1D and their caregivers, along with other key stakeholders (e.g., patient advocates, organizations, providers) are included in the development, testing, and dissemination of new assessments and interventions aimed at improving family quality of life and youth health outcomes. The inclusion of T1D stakeholders may ensure that the most important community issues are studied, solutions are co-created, and findings are quickly disseminated to the community.
Community-Based Issue: Our community-engaged research team developed a patient-centered and patient-driven rural T1D research agenda from 2018-2020 that identified key barriers to family-centered diabetes management and potential solutions to improve access and health outcomes. Since that time, the team has utilized a shared leadership model to co-create multiple assessments and interventions specific to rural families with a child with T1D (i.e., Diabetes Health Management Performance Scale- Parents of Children, HUMming for Health, REAL-Fam, REAL-Teen, Occupation-based Coaching).
Community Groups Included: Diabetes Research and Wellness Collaborative Patient-Centered Steering Committee; Children’s Hospital of Omaha, Diabetes Inc, South Texas Juvenile Diabetes Association, Breakthrough T1D, Children with Diabetes, Diabetes Inc., Monument Health, UNC Health, Center for Health Equity Research, state legislators, those living with T1D and their caregivers, providers, and researchers.
Partnership Innovations and Approaches: This showcase will discuss how we are currently growing, nurturing, and refining community partnerships to conceptualize, implement, test, and disseminate our previously developed patient-centered rural T1D research agenda, specifically for rigorous assessment and intervention development and testing (e.g., clinical trials). We will highlight the use of various engagement approaches (e.g., capacity building, shared leadership model and tiers, design thinking, intensive workshops, deconstruction of power hierarchies, use of shared identities) to foster innovative healthcare research.
Future Directions/Impact/Outcomes: Advanced community-engaged approaches (and measurement of these approaches) are critical to advance the standard care for youth with T1D and their families. Our research collaborative is committed to moving beyond the existing technology and task-oriented approach within endocrinology care and elevating the quality of services to reflect the most American Diabetes Association current standards of care to include patient-driven and patient-centered interventions (American Diabetes Association Professional Practice Committee, 2025).
References
American Diabetes Association Professional Practice Committee. (2025). 14. Children and adolescents: Standards of Care in Diabetes—2025. Diabetes Care, 48(Suppl. 1), S283-S305
Jewell, V. D., Funk, K. J., Currie, A., Shin, J., Knezevich, E. L., Valdez, A., & Bunsness, M. (2024). Rural caregiver perceptions on the content and receipt of a diabetes management telehealth occupation-based coaching intervention. Occupational Therapy Journal of Research, 32(4), 1-12. doi: 10.1177/15394492241280916
Jewell, V. D., Wise, A. C., Knezevich, E. L., Abbott, A. A., Feiten, B., & Dostal, K. (2022). Type 1 diabetes management and health care experiences across rural Nebraska. Pediatric Health Care, 26(7), 573-583. doi: 10.1016/j.pedhc.2022.07.005
Funding: The Diabetes Research & Wellness Collaborative has received funding from the Patient-Centered Outcomes Research Institute [Grant #10443], the International Society of Pediatric and Adolescent Diabetes Breakthrough T1D Fellowship, the American Occupational Therapy Foundation, Dexcom, the Winifred J. Ellenchild Pinch Research Award, the University of North Carolina Health Sciences Department, and the Creighton University Health Science Strategic Faculty Investment Fund, School of Pharmacy and Health Professions Fellowship, CURAS, and College of Nursing Dean’s Award.
Engage All: A National Stakeholder Network Driving Research on Inclusive Community Participation, Health and Well-Being
Tracy Jirikowic, PhD, OTR/L, FAOTA1, Roger Ideishi, PhD, OTR, FAOTA2, Robert Smythe3 Teal W. Benevides, PhD, MS, OTR/L4 and Roxanna Bendixen, PhD, OTR/L5
1University of Washington, Seattle, WA
2George Washington University; Washington DC
3Independent Consultant, Philadelphia, PA
4Augusta University, Augusta, GA
5Medical University of South Carolina, Charleston, SC
Keywords: Community participation, developmental disabilities, well-being
Background: Community participation disparities for individuals with intellectual and developmental disabilities (ID/DD) affect health outcomes, quality of life, and well-being for self and family members. While individuals with ID/DD are participants in research, they are rarely drivers of the research question (Bendixen et al., 2022). Co-creation in generating research inquiries can yield impacts that are relevant and meaningful to the person (Fletcher-Watson et al., 2021). Our overarching goal was to identify linkages between community participation, health and well-being for people with ID/DD and their families. We developed a national network of people with ID/DD, care partners, family members, community organizations and health care providers across five regions of the US to identify research priorities through community-led meetings. We highlight methods that expanded community member engagement, and strategies that optimized accessible and inclusive community member participation to co-create research priorities.
Community-Engagement Approach: The core research team included a person with a disability. The community advisory group included people with ID/DD, family members, caregivers, and other community stakeholders. A two-step virtual engagement process was co-developed that guided two regional community meetings.
Methods: We used a virtual two-step engagement process. First, research team members met with individual community members virtually to ask personal questions about community accessibility and participation. The community members chose the meeting days and times; the team members they wanted to meet with, and the method of contact (phone, Zoom, text). These “pre-meeting conversations” guided the larger regional group meeting agendas that aimed to expand the discussion among community members and identify common themes and priorities.
Results: The two-step engagement process informed a Virtual Engagement Toolkit (Benevides et al., 2021), which captured key lessons and recommendations for virtual meetings with community partners with ID/DD. In a post-meeting survey respondents, all agreed or strongly agreed that the pre-meeting conversation format was useful, that they were able to express themselves, and that it was a good use of time. In the group meeting, community members identified key themes that were important for them in relation to community participation and what fostered a sense of belonging.
Discussion: The two-step engagement process and the focus on individual connections before the larger community meetings increased safety and trust with participants. Benefits to this two-step engagement process include generating buy-in from participants, knowing and adapting to individual needs, and adjusting engagement formats to support individual needs in a larger group meeting. Participants felt heard, a sense of safety and trust was built, and contributions to future research were made. These contributions from community members including people with ID/DD, further inform research agendas that aim to advance accessible and inclusive community participation experiences.
References:
Bendixen, R. M., Benevides, T., Ideishi, R., Smythe, R., Taylor, J., Umeda, C., Kerfeld, C., & Jirikowic, T. (2022). Community conversations: Stakeholder-identified research priorities to foster community participation for individuals with intellectual and developmental disability. Frontiers in Rehabilitation Sciences, 3, 873415. https://doi.org/10.3389/fresc.2022.873415
Benevides, T. W., Ideishi, R., Smythe, R., Bendixen, R., Greaves, J., Perng, A., Taylor, J., Gibson, G., Kerfeld, C., & Jirikowic, T. (2021). A toolkit to engage people with intellectual and developmental disabilities and allies in virtual pre-research and research activities. University of Washington.
Fletcher-Watson, S., Brook, K., Hallett, S., Murray, F., & Crompton, C. J. (2021). Inclusive practices for neurodevelopmental research. Current Developmental Disorders Reports, 8, 88-97. https://doi.org/10.1007/s40474-021-00227-z
Funding: Funded by Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Awards (#EACC-18936) (#EAIN-5694). This work is solely the responsibility of the project leads and does not necessarily represent the views of PCORI®, its Board of Governors or Methodology Committee.
Specification and Validation of a Chronic Care Model for Traumatic Brain Injury (TBI)
Jessica Kersey, PhD, OTR/L1 and Maureen Cunningham2
1Washington University in St. Louis
2Executive Director, Brain Injury Association of Missouri
Keywords: Brain Injuries, Chronic Disease, Qualitative Research
Background: Traumatic brain injury (TBI) is treated as an acute event and most rehabilitation services are delivered within the first few months after injury. However, TBI is a lifelong condition that requires a chronic care approach (Dams-O’Connor, et al., 2023; Krishnamoorthy & Vavilala, 2022). Chronic care models incorporate proactive healthcare, leverage community resources, and focus on broad quality-of-life outcomes. Early efforts to develop a chronic care model specific to TBI lack details describing the supports and services within communities that lead to greater health and well-being (Corrigan, et al., 2025).
Community-Engaged Approach: This study was conducted in partnership with the Brain Injury Association of Missouri. The Brain Injury Association has recognized TBI as a chronic condition. This is now a top advocacy priority, grown from calls from people with TBI who report inadequate services under the existing model, and providers who report barriers to providing long-term services under existing policy and funding limitations. Our project was informed by these lived experiences and builds on them through qualitative research that centers the perspectives of people with TBI and their families. The Brain Injury Association of Missouri collaborated in grant development, research design, data collection, and interpretation of results.
Specific Aims: We aimed to 1) specify community-level needs required for a chronic care approach, and 2) solicit input on the chronic care model for TBI from people with lived experience.
Methods: We conducted focus groups with people with TBI (n=18), their family members (n=11), and providers (n=6). Data were analyzed using an iterative, inductive approach by two members of the study team using thematic analysis. Results were refined through a member-checking process.
Results: We identified five themes, which highlight systemic gaps in understanding, managing, and supporting TBI as a chronic condition. Primary issues include a lack of preparedness and the personal, provider, and system levels; barriers to accessing community resources; limited support for community and social participation; unmet mental health needs; and the critical role of family in survivor outcomes. The analysis revealed the need for stronger transition services from health systems to community resources, stronger initial education and support for health and participation, and greater access to long-term and sustained specialized services.
Discussion: Participants enthusiastically support a chronic care approach to the management of TBI. While there are numerous strong community services available, there are barriers to accessing them that must be addressed to successfully implement a chronic care approach. Key areas to focus research and development include mechanisms for transitioning clients to community services after discharge with a focus on equity, support to navigate services, and expanded eligibility and funding.
References:
Corrigan, J. D., Hammond, F. M., Sander, A. M., & Kroenke, K. (2025). Model of care for chronic brain injury. Archives of Physical Medicine and Rehabilitation, 106, 145-149. DOI: 10.1016/j.apmr/2024.08.001
Dams-O’Connor, K., Juengst, S. B., Bogner, J., Charavalotti, N. D., Corrigan, J. D., Giacino, J. T., Harrison-Felix, C., Hoffman, J. M., Ketchum, J. M., Lequerica, A. H., Marwitz, J. H., Miller, A. C., Nakase-Richardson, R., Rabinowitz, A. R., Sander, A. M., Zafonte, R., & Hammond, F. M. (2023). Traumatic brain injury as a chronic disease: insights from the United States Traumatic Brain Injury Model Systems Research Program. Lancet Neurology, 22(6), 517-528. DOI: 10.1016/S1474-4422(23)00065-0.
Krishnamoorthy, V., & Vavilala, M. S. (2022). Traumatic brain injury and chronic implications beyond the brain. Neurology, 5(4), e229486. DOI: 10.1001/jamanetworkopen.2022.9486
Funding: This study was funded by the Missouri Foundation for Health Opportunity Fund (23-0058-OF)
Co-Design of ENGAGE to Promote Community Participation after Stroke
Jessica Kersey, PhD, OTR/L1, Joy Hammel, PhD, OTR/L2, Carolyn Baum, PhD, OTR/L1, Tina Harris3, Sular Gordon4, Emily Kringle, PhD, OTR/L5 and Elizabeth Skidmore, PhD, OTR/L6
1Washington University in St. Louis
2University of Illinois Chicago
3Peer Leader, Pittsburgh, PA
4Peer Leader, St. Louis, MO
5University of Minnesota
6University of Pittsburgh
Keywords: Community Participation, Stroke, Feasibility Studies
Background: Stroke survivors report very low levels of community participation, even years after stroke (Kersey, et al., 2023). Intervention research provides limited evidence to support interventions that are robust in improving community participation engagement. ENGAGE is a community-based intervention that merges social learning, guided instruction, and supervised practice to identify and generate solutions to challenges with community participation after stroke (Lee, et al., 2019).
Community Engagement Approach: Community-dwelling stroke survivors, occupational therapy providers, and occupational therapy scientists partnered to co-design the essential and structural elements of ENGAGE, as well as to deploy and evaluate ENGAGE. ENGAGE sessions were co-facilitated by stroke survivors acting as peer mentors and occupational therapy providers (Moll, et al., 2020).
Specific Aims: The aims of this pilot study were to examine the feasibility, acceptability, and safety of ENGAGE and to characterize within group changes in community participation engagement.
Methods: We conducted a two-site single-arm community-based phase 2a clinical trial. A peer mentor (stroke survivor) and occupational therapist co-facilitated the 6-week ENGAGE group intervention through in-person (Phase I, 12 sessions) or web conference (Phase II, 9 sessions). Feasibility was assessed through participant retention, engagement, acceptability, satisfaction, and safety. Within group change was assessed through the PROMIS Ability to Participation in Social Roles and Activities Scale.
Results: Of the 42 participants providing consent, 38 were eligible, and 30 started the intervention program. Retention in the ENGAGE program was 90% (n=27). Of these, 85% engaged actively, 87% indicated very high satisfaction, and 0% reported injuries. Participants achieved a medium within group effect size of change (d=0.38, 95% CI=-0.11, 0.94) in community participation engagement.
Discussion: ENGAGE appears to be a feasible and promising intervention to promote improvements in community participation ability after in community-dwelling stroke survivors. Co-design and co-facilitation significantly enhanced the feasibility, acceptability, and safety of ENGAGE, as well as the observed changes in community participation engagement. Such an approach shows promise for addressing previous gaps in the science with respect to community participation interventions.
References:
Kersey, J., Skidmore, E., Hammel, J., & Baum, C. (2023). Participation and Its association with health among community-dwelling adults with chronic stroke. American Journal of Occupational Therapy, 77(6), 7706345010. doi: 10.5014/ajot.2023.050255.
Lee, D., Heffron, J. L., & Mirza, M. (2019). Content and effectiveness of interventions focusing on community participation poststroke: a systematic review. Archives of Physical Medicine and Rehabilitation, 100(11), 2179-2192.e1. doi: 10.1016/j.apmr.2019.06.008.
Moll, S., Wyndham-West, M., Mulvale, G., Park, S., Buettgen, A., Phoenix, M., Fleisig, R., & Bruce, E. (2020). Are you really doing ‘codesign’? Critical reflections when working with vulnerable populations. BMJ Open, 10(11), e038339. doi: 10.1136/bmjopen-2020-038339
Funding: This study was funded by the National Institutes of Health UL1 TR001857, UL1TR002345
Participatory Adaptation of a Community-Based Social Learning Intervention (ENGAGE-TBI)
Jessica Kersey, PhD, OTR/L1, Elizabeth Skidmore, PhD, OTR/L2, Carolyn Baum, PhD, OTR/L3, Amy Roder McArthur, PhD, OTR/L4, Elnaz Alimi, OTR/L4, Jawanda Ware5, Todd Gagliano5 and Joy Hammel, PhD, OTR/L4
1Assistant Professor, Washington University in St. Louis
2Professor, University of Pittsburgh
3Professor Emeritus, Washington University in St. Louis
4University of Illinois Chicago5Midwest Brain Injury Clubhouse
Keywords: Brain Injuries, Community Participation, Social Learning
Background: Traumatic brain injury (TBI) results in low levels of participation, and few OT interventions have successfully addressed this (Kersey, et al., 2024). ENGAGE, designed for people with stroke, is a community-based group intervention that shows promise (Kringle, et al., 2023). ENGAGE relies on social learning and guided discovery to achieve participation goals (Rouch & Skidmore, 2018). Participants identify strategies to overcome barriers to participation and apply those strategies to both individual and group goals. ENGAGE is co-delivered by an occupational therapist and a peer mentor with stroke. Because people with TBI have distinct needs, thoughtful adaptation of ENGAGE was required to ensure its relevance and accessibility for people with TBI.
Community-Engaged Approach: ENGAGE was originally developed in collaboration with people with stroke. People with stroke were involved in the original conceptualization of the program, the development of intervention activities, and intervention delivery as peer mentors. This ENGAGE adaptation study was conducted in partnership with the Midwest Brain Injury Clubhouse (MBIC). We conducted research activities on-site at MBIC, involved their members and leaders in all stages of the research, and provided a finalized intervention manual for their ongoing use at the end of the project. Two members at MBIC were full members of the study team, and were involved in study design, qualitative data collection, data analysis, protocol adaptation, and intervention delivery as peer mentors.
Specific Aims: We aimed to 1) identify key adaptation needs to enhance the relevance and accessibility of ENGAGE for people with TBI, and 2) adapt and refine the intervention protocol.
Methods: We conducted focus groups with people with TBI (n=10) to identify adaptation needs. We then adapted the intervention protocol and tested it with a group of 6 people with TBI. At the completion of the intervention, we conducted interviews with the participants, the occupational therapist, and the two peer mentors, to identify needs for refinement.
Results: The focus groups highlighted three key adaptation needs: 1) more time for reflection on lessons learned at the end of each session, 2) greater focus on social activities, and 3) more emphasis on strategies for effectively using social support. After testing the adapted protocol, we identified several areas for further refinement, including 1) refreshers at the start of each session, 2) a simplified process for documenting goals and strategies, and 3) simplified workbook materials for cognitive accessibility.
Discussion: This study resulted in a finalized intervention protocol: ENGAGE-TBI. This intervention has been developed with extensive input from people with TBI, thereby enhancing its relevance and validity. Further research is needed to examine the feasibility of delivering ENGAGE-TBI in community settings and to examine treatment effects.
References:
Kringle, E. A., Skidmore, E. R., Baum, M. C., Shih, M., Rogers, C., & Hammel, J. M. (2023). Stakeholders’ experiences using videoconferencing for a group-based stroke intervention during COVID-19: a thematic analysis. American Journal of Occupational Therapy, 77(3), 7703205100. DOI: 10.5014/ajot.2023.050111
Kersey, J., McArthur, A. R., & Hammel, J. (2024). Ongoing participation challenges related to the COVID-19 pandemic among people with brain injury. OTJR, 44(3), 478-487. DOI: 10.1177/15394492241233260
Rouch, S., & Skidmore, E. R. (2018). Examining guided and directed cues in strategy training and usual rehabilitation. OTJR, 38(3), 151-156. DOI: 10.1177/1539449218758618
Funding: This study received funding from the National Institutes of Health (UL1 TR002003) and the National Institutes of Disability and Independent Living Rehabilitation Research (90RE5023)
Virtual Community Engagement Studios: Engaging Mothers with IDD and Behavioral Health Conditions in Research
Joanne Nicholson, PhD1 and Susan Jones2
1Brandeis University
2Community Partner, Building Bridges with Mothers, Brandeis University
Keywords: mothers, IDD, behavioral health
Background/Significance: Women with intellectual and developmental disabilities (IDD) are mothers, who are vulnerable to adverse birth and parenting outcomes. The vulnerabilities of mothers with IDD may be exacerbated by co-occurring behavioral health (BH) conditions (i.e., anxiety, depression, psychotic disorders, and/or substance use). Among women of reproductive age (i.e., 16 to 44) with IDD, the prevalence of mental health conditions is 4 to 5 times higher than in those without IDD. The well-being of mothers with IDD/BH and their families is compromised by the lack of tailored, effective treatments, services, and supports. Parents with disabilities face considerable disparities in service systems. Supports may be inaccessible or unhelpful; women with IDD lack accessible informational support, emotional support, and social companionship. Consequently, mothers with IDD/BH are vulnerable to challenges in the parenting role, often fearing the potential of child welfare involvement, and custody loss.
Community Group: Our current partners include the Maternal Mental Health Research Collaborative, the Institute for Exceptional Care, the Massachusetts Partnership for Parents with ID/D, The Association for Successful Parenting (TASP), the Massachusetts Autism Professional Learning Collaborative, and Massachusetts state agencies. Our team and projects include parents with disabilities, family members, advocates, service providers, policymakers, and researchers.
Partnerships, Innovations and Approaches: We developed the Virtual Community Engagement Studio Toolkit for Researchers and Community Experts Interested in Maternal Behavioral Health and IDD, which we will showcase (Buell et al., 2022; Zisman-Ilani et al., 2022). We leveraged our active online Maternal Mental Health Research Collaborative (MMHRC) community of mothers, family members, providers, advocates and researchers to build-out the infrastructure, resources and tools to support partnerships in community engaged research, knowledge generation and dissemination. Mothers and other community experts were actively involved in co-designing, developing and implementing opportunities and supports for virtual engagement. We have had numerous requests from researchers across the country, who are using our toolkits in their community-engaged work.
Future Directions/Impact/Outcomes: We are laying the groundwork for optimizing outcomes for mothers and their families with IDD/BH by creating tools and resources to promote the virtual engagement of this target population with community stakeholders and researchers. We will contribute to increasing the number of relevant, sustainable, and effective interventions, services, and supports for mothers with IDD/BH; and improving outcomes through the dissemination and uptake of research findings informed and co-produced by mothers, community stakeholders, and researchers. Lessons learned in the virtual community engagement of mothers with IDD/BH have the potential to inform the design, implementation, and testing of telehealth interventions and mHealth applications, multiplying the potential for positive outcomes (Nicholson et al., 2023).
References:
Buell, J., Mazel, S., Zisman-Ilani, Y., Hennig, S., & Nicholson, J. (2022). Virtual Community Engagement Studio Toolkit: For researchers and community experts interested in maternal mental health and/or substance use/recovery and Research tip sheets. Supplementary Material Collection. Frontiers in Psychiatry, 13. https://www.frontiersin.org/articles/10.3389/fpsyt.2022.805781/full#supplementary-material
Nicholson, J., Mazel, S., Faughnan, K., & Silverman, A. (2023). Mothers with intellectual/developmental disabilities and behavioral health conditions and community experts provide recommendations for treatment/services, systems, and research. International Journal of Environmental Research and Public Health, 20, 5876. https://doi.org/10.3390/ijerph20105876
Zisman-Ilani, Y., Buell, J., Mazel, S., Hennig, S., & Nicholson, J. (2022). Virtual Community Engagement Studio (V-CES): Engaging Mothers With Mental Health and Substance Use Conditions in Research. Frontiers in Psychiatry, 13, 805781. https://doi.org/10.3389/fpsyt.2022.805781
Funding: This project was funded by the Patient-Centered Outcomes Research Institute (PCORI), Eugene Washington PCORI Engagement Award, EACB-26827 to Brandeis University. This work is solely the responsibility of the project leads and does not necessarily represent the views of PCORI®, its Board of Governors or Methodology Committee.
Effectiveness of Peer-Mediated Travel Intervention for Autistic Adults
Beth Pfeiffer, PhD, OTR/L, BCP1, Luke Tomczuk, MPP2 and Amber Davidson, MPH1
1Temple University
2Temple University and Community Integration Services
Keywords: travel training, peer intervention, autistic adults
Background: Autistic individuals often experience transportation challenges as primary barriers to essential community services such as health care and employment (Song et al., 2023). Research of travel training interventions has identified evidence-based techniques for improving specific transportation-related competencies(Lindsay, 2017). Peer-mediated interventions are recognized as effective and when provided in natural social contexts (Shea et al., 2022). This study evaluated a peer-mediated travel training approach with Autistic adults to provide and improve specific skills necessary for independent travel on public transportation.
Community-Engagement Approach: This project was implemented with key partners including service organizations, people with lived experience and parents/caregivers. All community partners were involved in multiple aspects of the project including intervention implementation, advisory board representation, and dissemination. Engagement approaches including providing peer support for members of the advisory board and participants during the intervention and data collection. People with lived experience were hired staff on the project and leaders from service organizations were paid consultants.
Specific Aims: The purpose of this study was to examine the impact of a peer mediated transportation intervention on travel skills, self-efficacy, and community participation for Autistic adults.
Methods: A randomized control trial (RCT) was used to determine the effectiveness of a peer-mediated travel training program on travel skills, community mobility goals, community participation, and self-efficacy for individuals with ASD. Participants were Autistic young adults with a mean age of 21. The Chance to Ride travel intervention was implemented by Autistic peer support specialists over 4-6 weeks. Measures including self-report, observational measures, and GPS data were collected at baseline and two weeks after the intervention. Data on community participation and self-efficacy was collected again 4 months post-intervention. Analyses to compare group differences over time were completed. Pearson correlations were used to examine the associations between different constructs at baseline.
Results: Seventy-five individuals were enrolled in the study, with 38 individuals in the control group and 37 in the experimental group. The group receiving peer-mediated intervention significantly improved the travel skills necessary for public transportation and community mobility (p < 0.0001), although there were no significant differences between groups in community participation or self-efficacy. Results identified that peer-mediated travel training was feasible for adults with autism.
Discussion: Study results identify promise for a comprehensive peer-mediated travel training intervention to improve travels skills and community mobility. Future research is needed that examines the implementation and effectiveness of different service delivery models such as peer versus staff-delivered interventions.
References:
Lindsay, S. (2017). Systematic review of factors affecting driving and motor vehicle transportation among people with autism spectrum disorder. Disability and Rehabilitation, 39(9), 837–846. https://doi.org/10.3109/09638288.2016.1161849
Shea, L. L., Wong, M.-Y., Song, W., Kaplan, K., Uppal, D., & Salzer, M. S. (2022). Autistic-Delivered Peer Support: A Feasibility Study. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-022-05816-4
Song, W., Salzer, M. S., Pfeiffer, B., & Shea, L. L. (2023). Transportation and Community Participation Among Autistic Adults. Inclusion, 11(1), 40–54. https://doi.org/10.1352/2326-6988-11.1.40
Funding: The contents of this presentation were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (901FRE0013-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this article do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.
Empowering Brain Health Equity through Community-Engaged, Occupation-Based Educational Series among Rural Older Adults
Elizabeth Rhodus, PhD, MS, OTR/L, FAOTA1, Celeste Roberts, MS, OTR2, Yolanda Jackson, MS, RD, LD1, Nyla Swain, BS1, Debora Bobbitt3, Reverend Anna Jones, AS3, Carla Carter, MS1, Bishop Tiangello Hill4 and Rosby Glover,* DMin, MS4
1University of Kentucky
2University of Kentucky; Nova Southeastern University
3Community Liaison, First Baptist Church Frankfort
4Community Leader, First Baptist Church Frankfort
Keywords: Rural, Aging, Health equity
Background/Significance: Aging in rural communities is complicated by limited availability of resources that would support community-based aging, such as healthcare, educational programs, and care supports. Additionally, members of historically marginalized communities are less likely to utilize resources when available (Wallace et al., 2022). These scenarios create health inequities throughout the nation that call occupational justice into action. For example, a rural county in Kentucky has been ranked as #2 in the country for prevalence of Alzheimer’s disease and related dementias (ADRD) among African Americans (Mudrazija et al., 2020). Health promotion through occupational engagement among community-based groups encourages improved overall health. Co-designed (community and research teams) occupation-based educational programs can serve as a valuable tool to empower aging individuals to seek occupations that support healthy brain aging. The objective of this project was to provide occupation-based educational programs oriented toward brain health for a community with demonstrated inequities related to ADRD.
Community Group: First Baptist Church Frankfort, Franklin County Cooperative Extension Service
Partnership Innovations and Approaches: Through a series of community health assessments (Janssen et al., 2020) and collaboration with faith-based community leadership, a workshop series oriented toward applying occupation-based educational programs was developed and implemented to address health inequities as it relates to brain health. For example, community health assessments identified elevated incidence of diabetes and hypertension in the community. Subsequently, educational programs included interactive meal preparation demonstrations and physical activity (i.e., rhythmic drumming) with heart rate and blood pressure monitoring provided by local health providers and content experts. Innovations of this community-based program include 1) occupation-based educational series for health promotion, 2) collaboration with trusted, faith-based leaders, and 3) evolution of programmatic themes guided by community input.
Future Directions/Impact/Outcomes: The program is entering its third year with a total of 16 completed workshops. Enthusiasm for the program continues to grow throughout the community and beyond. Additional methods are planned for surveying current community needs, infrastructure expansion to increase capacity and reach, and monitoring the impact on community health status. Opportunities to improve health through occupation-based, community-engaged programming are substantial, and we look forward to continuing to evolve this partnership for maximum benefit to the community.
References:
Janssen, S. L., Klug, M., Johnson Gusaas, S., Schmiesing, A., Nelson-Deering, D., Pratt, H., & Lamborn, B. (2020). Community-Based Health Promotion in Occupational Therapy: Assess Before You Assess. Journal of Applied Gerontology, 40(9), 1134-1143. https://doi.org/10.1177/0733464820921320
Mudrazija, S., Vega, W., Resendez, J., & Monroe, S. (2020). Place & Brain Health Equity: Understanding the County-Level Impacts of Alzheimer’s. https://www.usagainstalzheimers.org/sites/default/files/2020-11/Urban_UsA2%20Brain%20Health%20Equity%20Report_11-15-20_FINAL.pdf
Wallace, J., Lollo, A., Duchowny, K. A., Lavallee, M., & Ndumele, C. D. (2022). Disparities in Health Care Spending and Utilization Among Black and White Medicaid Enrollees. JAMA Health Forum, 3(6), e221398. https://doi.org/10.1001/jamahealthforum.2022.1398
Funding: Funding for these projects has been provided by the Pat Summitt Foundation, the University of Kentucky Cooperative Extension Office, and the University of Kentucky Department of Behavioral Science.
Engaging Hispanic and Latino Families of Autistic Children to Improve Access to Occupational Therapy Services
Lady Rios Vega OTD, OTR/L1, Marisela Ponce2, Kristin Rising MD3, Matthew Fields MD3, Brian Freedman PhD4 and Roseann C. Schaaf PhD, OTR/L, FAOTA1
1Department of Occupational Therapy, Thomas Jefferson University
2Community Partner
3Sidney Kimmel Medical College, Thomas Jefferson University
4Swank Autism Center, Nemours Children’s Health
Keywords: Stakeholder participation; Autism Spectrum Disorder;Occupational Therapy
Background: Minoritized families of autistic children face significant delays in accessing interventions resulting in developmental delays, lower quality of life, and economic burden (Smith et al., 2020). These populations are also underrepresented in intervention research (Davenport et al., 2018). Stakeholder engagement in research improves cultural relevance, inclusion, and outcomes, as well as intervention utilization and acceptability (Carman et al., 2013).
Community Engagement Approach: We utilized the Patient-Centered Outcomes Research Institute (PCORI) engagement principles (listed below) to engage diverse groups of stakeholders to support a larger project whose aim is to compare two engagement methods for Hispanic/Latino (H/L) families of autistic children. The engagement sessions will gather insights on the access and use of occupational therapy services; and will inform a cultural adaptation of Occupational Therapy using Ayres Sensory Integration®.
Reciprocal relationships: Involved stakeholders throughout the project implementation and decision-making.
Partnerships: stakeholders participated in consultations and collaborations with fair compensation following PCORI’s guidelines.
Co-learning: accessible and comprehensive learning opportunities were provided.
Transparency: honest, flexible communication was maintained.
Specific Aims: Aim 1: Establish three advisory boards
H1: The advisory board will represent diverse stakeholders.
H2: Advisory board members will rate learning modules used to facilitate engagement as acceptable.
H3: Advisory board members will rate engagement experience as satisfactory.
Methods: We used a mixed methods prospective design to identify and engage stakeholders via snowball sampling. Inclusion criteria: H/L autistic individuals, parents, or providers serving the H/L autistic community. Engagement activities included orientation, learning, and meetings. Surveys assessed the acceptability of the learning modules using the Acceptability of Intervention Measure (AIM) (Weiner et al., 2017). The Stakeholder-Centric Engagement Evaluation (Martinez et al., 2021) measured stakeholder engagement frequency (“how often”) and quality (“how well”) using a Likert scale (5 = always/excellent, 1 = never/poor).
Results: Three highly diverse stakeholder advisory boards were formed, including H/L caregivers of autistic individuals (n = 7), autistic individuals (n=3), cultural experts (n=3), occupational therapists (n=3), autism experts (n=3), and teachers (n=3).
Most stakeholders (83.3%) strongly agreed that the learning modules were acceptable. The engagement process was rated as satisfactory, with a mean of 4.45 (SD = 0.24) for “how often” and a mean of 4.29 (SD = 0.23) for “how well” for all boards.
Discussion: Stakeholder engagement can improve access to occupational therapy services and potentially improve outcomes for minoritized autistic communities. H/L autistic individuals, families, and providers found the learning strategies acceptable and the engagement experience satisfying. Consistent with the literature, stakeholder engagement empowers clients to contribute to research, fostering culturally sensitive, client-centered interventions aligned with occupational therapy principles.
References:
Davenport, M., Mazurek, M., Brown, A., & McCollom, E. (2018). A systematic review of cultural considerations and adaptation of social skills interventions for individuals with autism spectrum disorder. Research in Autism Spectrum Disorders, 52, 23-33. https://doi.org/10.1016/j.rasd.2018.05.003
Smith, K. A., Gehricke, J. G., Iadarola, S., Wolfe, A., & Kuhlthau, K. A. (2020). Disparities in Service Use Among Children With Autism: A Systematic Review. Pediatrics, 145(Suppl 1), S35–S46. https://doi.org/10.1542/peds.2019-1895G
Carman, K.L., Dardess, P., Maurer, M., Sofaer, S., Adams, K, Bechtel, C., & Sweeney J. (2013). Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs, 32(2), 223-231.405 https://doi.org/10.1377/hlthaff.2012.1133406
Funding: This project is funded by the Patient-Centered Outcomes Research Institute.
(PCORI) Science of Engagement Award (SOE-2022C2-28939). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or the Methodology Committee.
Partnering to Identify Priorities for Practice, Policy, and Research for Return-to-Work with Long COVID
Shawn C. Roll, PhD, OTR/L, RMSKS, FAOTA, FAIUM1, Brad Crowe2, Cat Youell3, Jamie Wilcox1 and Rebecca M. Aldrich, PhD, OTR/L1
1University of Southern California
2Individual with Long COVID, Minx Pictures 3Care Partner, Minx Pictures
Keywords: Long COVID, Return-to-Work, Work Accommodations
Background: Long COVID affects nearly 7% of American adults. Emerging evidence suggests extreme variability in recovery trajectories and impairments that disrupt participation across occupational domains. These factors create unique challenges in supporting return-to-work (RTW) for individuals with long COVID.
Community-Engaged Approach: Using a phased approach, researchers first interviewed individuals with long COVID and clinicians. Then, an individual with long COVID, their care partner, and a clinician joined the researchers in additional knowledge generation, synthesis, and mobilization activities. The team is developing a conceptual framework and evidence briefs to promote uptake in clinical practice, policy, and research.
Specific Aims: This community-engaged project aims to characterize facilitators and barriers to RTW for persons with long COVID, identify community-driven priorities for improving RTW support, and develop evidence briefs to mobilize knowledge and advance practice, policy, and research.
Methods: A foundational understanding of long COVID, including the facilitators and barriers to RTW, was obtained through 60-120 minute semi-structured interviews with 11 adults who had an extended absence from work due to long COVID and 4 healthcare providers who had provided services for long COVID patients. Using a modified nominal group technique (NGT), interview findings were presented to a community panel of 3 patients, 1 care partner, and 1 clinician. Panelists generated priorities for practice, policy, and/or research, and shared them round-robin until all priorities were listed. The panel synthesized the priorities into a concise list through a facilitated discussion, and each panelist rank-ordered the final priorities using Mentimeter. The panel discussed the final rankings to confirm consensus, identify areas for further clarification and targeted end-users, and provide additional individual perspectives.
Results: Consensus was achieved on the rank order for ten identified priorities. The highest-ranked priorities included increasing employers’ flexibility in providing accommodations specific to individual needs, ensuring patients are aware of all possible RTW options, improving education and awareness of long COVID across healthcare and work sectors, and reforming the disability and insurance systems to be more responsive to exceptional circumstances surrounding long COVID. Through the consensus process, community partners provided examples relative to practice, policy, and research for each of the named and ranked priorities and suggested potential organizing frameworks for the interview and NGT findings.
Discussion: RTW for individuals with long COVID is complex and highly individualized, and existing healthcare, disability, and RTW systems are not prepared to support this novel condition. Findings highlight disconnects, gaps, and complexities in the RTW process for people with long COVID and demonstrate the need to draw on evidence-based lived experiences of this novel/emerging phenomenon to advance practice and support.
References:
Brehon, K., Niemeläinen, R., Hall, M., Bostick, G. P., Brown, C. A., Wieler, M., & Gross, D. P. (2022). Return-to-Work Following Occupational Rehabilitation for Long COVID: Descriptive Cohort Study. JMIR rehabilitation and assistive technologies, 9(3), e39883. DOI: 10.2196/39883
Kohn, L., Dauvrin, M., Detollenaere, J., Primus-de Jong, C., Maertens de Noordhout, C., Castanares-Zapatero, D., Cleemput, I., & Van den Heede, K. (2024). Long COVID and return to work: a qualitative study. Occupational medicine (Oxford, England), 74(1), 29–36. DOI: 10.1093/occmed/kqac119
Stelson, E. A., Dash, D., McCorkell, L., Wilson, C., Assaf, G., Re’em, Y., & Wei, H. (2023). Return-to-work with long COVID: An Episodic Disability and Total Worker Health® analysis. Social science & medicine, 338, 116336. DOI: 10.1016/j.socscimed.2023.116336
Funding: Responding to Society’s Post-pandemic Occupational Needs (ReSPONs) Initiative Seed Grant, University of Southern California Chan Division of Occupational Science and Occupational Therapy.
Setting the stage for community-engaged research and knowledge mobilization: Sensory Processing and Autism Network
Leah I. Stein Duker, PhD, OTR/L1, Lan Le Carrico, MA, OTR/L, SWC2, Elizabeth M. Phelps, OTD, OTR/L1, Erna Blanche, PhD, OTR/L, FAOTA1, Amy Prasad, OTD, OTR/L3 Grace T. Baranek, PhD, OTR/L, FAOTA1 and Sensory Processing and Autism Network (SPAN)
1University of Southern California
2Carrico Pediatric Therapy Inc
3Momentum Pediatric Therapy Network
Keywords: sensory processing, knowledge mobilization, community-based research
Background/Significance: Sensory differences are commonly experienced across a myriad of clinical populations (e.g., autism), with potential impacts on participation, adaptive behavior, caregiver experiences, and more (Ben-Sasson et al., 2019). However, there is a dearth of research co-led by community partners (e.g., clinicians, self-advocates) to develop shared priorities for knowledge mobilization (KMb; Baranek et al., 2021) and examine the effectiveness of interventions targeting sensory differences and their impact on daily life. To address this, we developed a community-based research network.
Community Group: Clinicians representing six pediatric occupational therapy clinics, occupational science and therapy researchers, and autistic collaborators.
Partnership Innovations and Approaches: The Sensory Processing and Autism Network (SPAN) is a community-based research network committed to improving outcomes for individuals with sensory differences and their families, with the goal of developing high quality evidence-based outcomes research with meaningful societal impact. As part of this network, we have leveraged our collective expertise and resources to execute three concurrent projects for knowledge mobilization. In order to identify research priorities, the first project, funded by PCORI, established a diverse alliance of self-identified autistic stakeholders, family members and caregivers, clinicians, and researchers and was entitled “Transforming Research: Understanding Sensory Experiences in ASD, Stakeholders Working Together (TRUST).”
For the second project, OT clinicians and researchers worked together to identify priorities for a common assessment battery across clinics to facilitate systematized data collection related to child sensory processing, motor performance, participation, executive function, sleep, health-related quality of life, as well as caregiver experiences. This battery will be utilized in the development of an online data repository and research registry. In the third project, SPAN members identified a need to develop a more efficient, effective, and clinically relevant metric of sensory processing challenges, levels of improvement with intervention, and impacts on occupations, resulting in the development and subsequent pilot and feasibility testing of the Pediatric Sensory Clinical Global Impressions (PS-CGI) scales.
Future Directions/Impact/Outcomes: Clinical-community-research collaborations, such as SPAN, that establish shared priorities can greatly facilitate engagement of stakeholders across KMb phases of knowledge generation, dissemination, uptake, and implementation of interventions targeting sensory impacts on daily life (Baranek et al., 2021; Michener et al., 2012). These three SPAN projects work synergistically to move from the development of shared priorities and measures to the design and execution of studies testing the evidence-base of clinical and community interventions to better address the needs of autistic individuals and their caregivers with respect to sensory differences.
References:
Baranek, G. T., Frank, G., & Aldrich, R. M. (2021). Meliorism and knowledge mobilization: Strategies for occupational science research and practice. Journal of Occupational Science, 28, 274-286. https://doi.org/10.1080/14427591.2020.1824802
Ben-Sasson, A., Gal, E., Fluss, R., Katz-Zetler, N., & Cermak, S. A. (2019). Update of a meta-analysis of sensory symptoms in ASD: A new decade of research. Journal of Autism and Developmental Disorders, 49(12), 4974–4996. https://doi.org/10.1007/s10803-019-04180-0
Michener, L., Cook, J., Ahmed, S. M., Yonas, M. A., Coyne-Beasley, T., & Aguilar-Gaxiola, S. (2012). Aligning the goals of community-engaged research: Why and how academic health centers can successfully engage with communities to improve health. Academic Medicine, 87, 285-291. https://doi.org/10.1097/ACM.0b013e3182441680
Funding: University of Southern California Chan Division of Occupational Science and Occupational Therapy; Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award: Capacity Building (19922-USC).
Exploring Transition to Adulthood Opportunities for Individuals with Intellectual and Development Disability Through Appreciative Inquiry
Laurie Stelter, PhD, OTR1, Cynthia Tiongco, PhD, OTR1, Macey Barnard, OTD, OTR2, Kesli Coffelt, OTD, OTR2 and Teresa Vitela2
1Texas Tech University Health Sciences Center2Community Partner
Keywords: Intellectual and Developmental Disability; appreciative Inquiry; transition to adulthood; community-engaged research
Background: The transition to adulthood exposes unique challenges for individuals with intellectual and developmental disabilities (IDD) and their families as they navigate the shift from school-based supports for daily structure and services to those opportunities available in their community for meaningful occupational participation. Many families report feeling like they are “coming to the edge of a cliff” as they seek to identify quality service opportunities for their young adult after leaving the secondary school setting (Benson et al., 2021).
Community-Engagement Approach: Consistent with guidelines for engaged scholarship described by Van De Ven (2013), this project team engaged community stakeholders in intentional and meaningful dialogues and decision making using an appreciative inquiry (AI) approach. AI focuses conversations on the “positive core” of the issue-at-hand leading to shared exploration of possibilities for growth and improvement (Whitney & Trosten-Bloom, 2010).
Specific Aims: This project aimed to: (1) identify the strengths and access pathways of existing IDD post-secondary education services in a mid-sized city within the Southwest region of the U.S.; (2) generate a collective vision for the future of supports and engaged research for individuals with IDD; and (3) clarify stakeholders interested in participating in a community advisory board for advancing mutually beneficial local capacity building IDD service and research initiatives.
Methods: Local IDD stakeholders were identified via purposive and snowball sampling. Qualitative data was collected and thematically analyzed from AI consistent semi-structured interviews, focus groups, and site visits with sixteen stakeholders representing IDD service organizations, school districts, and individuals and families with lived experience. The Delphi method was used to further develop participating stakeholder consensus for prioritizing and advancing next steps.
Results: This project resulted in a comprehensive community IDD service resource asset map; specific themes consistent with the AI constructs of “Discovering” and “Dreaming”; a list of community priorities; the establishment of an advisory board for progressing the community-engaged design and delivery of research and programmatic initiatives; and seed-grant funding for a university campus-based transition program based on Clubhouse Model principles.
Discussion: These outcomes were meaningful for pursuing funding, program development, and engaged research projects to enhance local access to quality post-secondary occupational participation for those with IDD. This project can inform other occupational therapists, educators, researchers, and community stakeholders in the replication of effective strengths-based processes for initiating and enhancing community-engaged research, program development, and service learning for this population within their own communities. The use of AI and Delphi methodology to initiate community-engaged initiatives also demonstrates promise for addressing other real-world social issues impacting occupational participation.
References
Benson, J. D., Tokarski, R., Blaskowitz, M. G., & Geubtner, A. (2021). Phenomenological study of the transition process for adolescents with intellectual and developmental disabilities. American Journal of Occupational Therapy, 75(3), 1–10. https://doi.org/10.5014/ajot.2021.044289
Van De Ven, A.H. (2013). Engaged scholarship: A guide for organizational and social research. Oxford University Press.
Whitney, D., & Trosten-Bloom, A. (2010). The power of appreciative inquiry: A practical guide to positive change (2nd ed.). Berrett-Kohler Publishers.
Funding: No funding reported for this project.
