Community Engagement for Disability and Aging Research (CEDAR)
Midwest
Fall 2020
CEDAR Midwest is a Disability and Rehabilitation Research project funded by the National Institute on Disability, Independent Living and Rehabilitation Research. This research project is exploring the participation needs of people aging with a physical disability in the community and how community organizations can best meet those needs.
Project Updates
Project 1: Community-Based Research Network
COVID Resource List
Our Community-Based Research Network has compiled a list of resources pertaining to the COVID-19 pandemic for people aging with disabilities in Missouri and southern Illinois. Visit cedarmidwest.org for an up-to-date list of resources available from Community-Based Research Network member organizations.
New at Paraquad Health and Wellness Center
While COVID-19 has altered everyone's lives, in ways big and small, one thing that hasn't changed is the need for people with disabilities to have access to adapted exercise options. Community-Based Research Network member Paraquad has been working to provide opportunities to help people exercise safely at home and in person. The Paraquad Health and Wellness Center is now offering telehealth exercise training, Zoom group exercise classes and adapted exercise videos. Additionally, they have implemented an appointment system for those coming to exercise in person in order to maintain social distancing.
Beyond these COVID-related changes, the Health and Wellness Center is expanding in exciting ways, focusing on new services that will better meet the needs of people who are just leaving a rehabilitation center or hospital after an injury or major health event. This includes expansion of one-on-one exercise training to provide people with condition-specific exercise options and purchase of new equipment to help maximize neural recovery. This new equipment includes a C-Mill treadmill, Erigo®, Xcite and Solo-Step® overhead track and harness system. Paraquad strives to make the transition from patient to community exercise participant seamless, accessible and safe!
Project 2: Longitudinal Cohort Study
Health and Participation: Findings from Qualitative Analysis
We examined the responses to open-ended questions in our longitudinal cohort study of people aging with long-term physical disabilities to uncover themes and factors related to their community participation. Respondents reported both intrinsic (e.g., body structures and functions, symptoms, emotional and mental states) and extrinsic (e.g., physical environment, economic factors, social environment) factors affecting their community participation.

We found eight themes that influence community participation for people aging with physical disabilities, in order of frequency: body structures and function, symptoms, physical environment, social environment, temporal environment, economic environment, political environment, and mental/emotional state.
Chart displaying the eight themes and distributions
A sunburst chart showing the eight themes revealed in our qualitative analysis of factors that influence participation for people aging with disabilities.
Although eight themes were found, they were not discrete; participants often reported that one factor influenced or combined with other factors to affect their participation. For example, some participants described fatigue (symptoms) affecting their motivation (mental/emotional state), which ultimately impacted their participation. Transportation also frequently affected other domains, such as the ability to socialize. Our findings reveal that perceived factors influencing participation are intertwined; thus, interventions to address participation should consider these complexities. The diverse needs of people aging with disabilities must be considered for future services and interventions.
COVID Supplement Survey Findings
Beginning on April 16, all participants of our longitudinal cohort study were invited to participate in a supplemental survey about how the COVID-19 pandemic has affected their health and participation. One hundred eighty-six individuals between the ages of 45 and 65 (average age 59) participated. We asked questions about depression, anxiety, loneliness and sleep quality. A regression analysis of the data revealed that lower education level, living with others, financial stress, loneliness and anxiety were all associated with increased symptoms of depression on the COVID survey. The finding of higher depression among participants who live with others compared to those who live alone was surprising. Possible explanations could include a greater likelihood of employment for people living alone or privacy issues, lack of alone time, domestic conflicts or potential stress related to caregiving for people living with others.

Analysis also revealed some differences between participants who responded via phone and those who responded via email. Participants who responded to the supplement via phone tended to be older and have lower levels of education. Phone respondents also reported higher pain interference with their participation. These results underscore the importance of including both phone and email options for survey data collection, as relying solely on email may exclude many underserved participants and impact the generalizability of findings.
Project 3: Developing and Pilot Testing an Intervention to Reduce Environmental Barriers and Promote Participation for People Aging with Disability
Project 3 consists of adapting an evidence-based intervention to reduce environmental barriers and promote participation for people aging with disability. We held key informant interviews and focus groups with people aging with disabilities and professionals who work with aging and/or disability populations to ensure that the intervention will best meet the needs of people aging with disabilities. We used the findings from these interviews and focus groups as well as information from the following sources to inform the intervention:
  • our community-based research network (Project 1)
  • our longitudinal cohort study (Project 2),
  • and the COMPASS, an intervention originally designed to promote community participation and reduce environmental barriers to participation for individuals returning home following stroke.
REBIL
The resulting Removing Environmental Barriers to Independent Living (REBIL) intervention consists of two components: (1) home modifications from a trained occupational therapy interventionist to prevent falls and help people aging with disabilities perform their daily activities, and (2) self-management strategies to help participants problem-solve barriers to participation. The final phase of Project 3 is to pilot test the intervention with three people aging with disabilities and refine the intervention based on feedback from these participants. We are currently testing the intervention with our third pilot participant.
Components of the intervention: Home modification (specific to the individual, participant identifies problems in the home, shared decision making between OT and participant, common solutions include installation of grab bars, improving lighting, and securing rugs) and Self-Management  (using problem-solving skills to manage a health condition--enables people to identify and resolve barriers to participation; components include education on the influence of the environment, instruction in problem-solving strategies, and generalization of strategies for emerging problems; problem-solving approach enables people to address barriers as their abilities change)
Project 4: Testing the Efficacy of the REBIL Intervention
Project 4 will test the preliminary efficacy of REBIL with approximately 50 people aging with disabilities. We are beginning to recruit participants for Project 4. If you are between the ages of 45 and 65, have lived with a physical disability for at least five years, and are interested in receiving the intervention, please email us at cedarmidwest@paraquad.org.
Our Team
CEDAR Midwest includes well-established scientists in rehabilitation/participation science and aging research, and community organizations that serve both older adults and people with disabilities. Our team is experienced in community-engaged research approaches. The institutional partners, Washington University, Paraquad and the Simmons School of Social Work, are leaders in participation and aging with disability. Scientific and community advisory boards enhance the team and ensure the scientific rigor and community focus of our projects. To learn more about our team, please visit cedarmidwest.org.
Team Member Spotlight: Marian Keglovits

Marian Keglovits, OTD, MSCI, OTR/L is an Instructor in Occupational Therapy and Neurology at Washington University School of Medicine. She holds a bachelor’s degree in anthropology from Colorado College and graduated from Washington University School of Medicine with a doctorate in occupational therapy. She also completed the TL1 predoctoral training program with a master’s degree in clinical investigation at Washington University School of Medicine. She works with Dr. Stark in the Participation, Environment, Performance Laboratory where she assists with conducting research to advance safety and independence for older adults and individuals with disabilities through home modifications and research. Dr. Keglovits works on the CEDAR Midwest grant as the study coordinator communicating with CEDAR Midwest team members and study participants to complete the yearly surveys (Project 1). She also works as an occupational therapist on the pilot study of the REBIL intervention (Project 3).

Welcoming Our New Team Members
The CEDAR Midwest team is excited to welcome two new members: Washington University Program in Occupational Therapy doctoral student Sarah Pease (left) and postdoctoral research associate Dr. Szu-Wei Chen (right).
photos of two new team members
Featured Advisory Board Member
Feedback from our scientific and community advisory boards helps to refine the mission, projects and goals of CEDAR Midwest and ensure that our research is scientifically rigorous and responsive to the needs of the community. 
Aimee Wehmeier
Aimee Wehmeier is President of Paraquad in St. Louis. Paraquad is one of the first Centers for Independent Living (CILs) in the country, serving about 2,200 people with disabilities annually. Ms. Wehmeier earned a Bachelor of Educational Studies from the University of Missouri and an MBA from William Woods University. Community leadership includes the St. Louis Regional Chamber Board; Diversity Awareness Partnership; Metropolitan St. Louis Equal Housing and Opportunity Council Board; and Missouri Foundation for Health, Washington University, and MO Better Foundation Advisory Boards. Ms. Wehmeier received the Governor’s Council on Disability Inclusion Award in 2010 and was recognized by the St. Louis Business Journal as a 2015 Diverse Business Leader and 2018 Class of Most Influential Business Women. Ms. Wehmeier has been described as “the face of disability.” She has a passion for public policy, advocacy and increasing opportunities for people with disabilities. Employment and economic self-sufficiency are her highest priorities.
What We've Been Up To...
"How To OT" Podcast
CEDAR Midwest team member Courtney Weber was featured on "How To OT," an occupational therapy podcast developed and hosted by Washington University Program in Occupational Therapy student Matt Brandenburg. Courtney discussed her work on physical activity and participation for people aging with long-term physical disabilities. You can find more episodes of "How To OT" on any podcast-streaming application or service.
What's Coming
ACRM Conference
CEDAR Midwest researchers Marian Keglovits, Rachel Heeb and Courtney Weber have been accepted to present posters at the 2020 American Congress of Rehabilitation Medicine (ACRM) Annual Conference, which will be held virtually Oct. 21-24. The goal of ACRM is to improve "lives through interdisciplinary rehabilitation research." The ACRM conference invites researchers in a variety of fields related to rehabilitation to share their research with an interdisciplinary audience.

Marian will present on the findings from the COVID-19 supplement to our longitudinal cohort study, particularly how COVID-19 and the subsequent social distancing and stay-at-home guidelines have affected people aging with long-term physical disabilities. Rachel will present on the qualitative findings from the longitudinal cohort survey of people aging with disabilities, and Courtney will present on factors that influence community participation for people aging with long-term physical disabilities.
GSA Annual Meeting
CEDAR Midwest is looking forward to sharing multiple presentations at the Gerontological Society of America (GSA) Annual Meeting, which will be held online October 26-30. The GSA Annual Meeting is an opportunity for researchers, clinicians and community organizations who work with older adults to share the latest science, technology and resources in the field of aging. Susy Stark will present on our scoping review of the underrepresentation of adults and older adults in behavioral clinical trials, and Margaret Campbell will give her presentation, "Why increased focus on aging with disabilities matters to gerontology research, policy and practice."
For technical assistance with any part of this project including information, resources, and data, please call 314-289-4270 or email us at cedarmidwest@paraquad.org.
Find out more at cedarmidwest.org.
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For technical assistance or more information, please call 314-289-4270 or email us at cedarmidwest@paraquad.org.

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