Community Engagement for Disability and Aging Research (CEDAR)
Midwest
Summer 2021

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 and how community organizations can best meet those needs.

Project Updates

Project 1: Community-Based Research Network

Our community-based research network, the Missouri Aging and Disability Research Network (MADRN), is in its third year and has grown to include 13 organizations that provide services for older adults and people with disabilities. With MADRN, we have conducted a longitudinal cohort study (Project 2) and begun our pilot study of an intervention to promote participation for people aging with disabilities (Projects 3 & 4).

MADRN members have decided that the next focus of the network will be on implementation science. To this end, we consulted with the Washington University Institute for Clinical and Translational Sciences (ICTS). Our research has revealed fall prevention information and programs as important but lacking resources for people with disabilities living in the community. With the ICTS, we brainstormed ways to implement a fall prevention program without overwhelming the often strained resources of community organizations and to ensure that programming is relevant to both agencies serving older adults and agencies serving individuals with disabilities.

CEDAR Midwest Principal Investigator, Dr. Susy Stark, presents falls data from our cohort survey to MADRN members.

Implementation was also a topic of discussion at the quarterly MADRN member meeting on August 10. The meeting also included an introduction to Paraquad, an independent living center and member of MADRN, by Paraquad president Aimee Wehmeier; an update on the status of our cohort study; and a presentation of falls data from the cohort study.

Project 2: Longitudinal Cohort Study

We are in Year 3 of our longitudinal cohort study of the health and participation of people aging with long-term physical disabilities; so far, 322 of 387 participants have completed the third and final survey. As participants complete their Year 3 surveys, we are continuing to analyze the data from the first two years of the study.

We took an in-depth look at data regarding falls from Year 1. See the below infographic for our findings.

Longitudinal study of people aging with long-term physical disabilities: Falls and Participation. Background. In the US, falls are the 3rd leading cause of unintentional injury leading to death for all ages. More than one in four older adults fall each year. People with early- and midlife-onset of physical disability are also at risk for falls. Information about falling and people aging with long-term physical disability is limited. We surveyed 474 people aging with long-term physical disability (between 45 and 65 years) to: determine the prevalence of falls, fall-related injury, and fear of falling; examine relationships between falls and health conditions; and explore the relationship between falls and community participation. Results. Falls, Injuries, and fear of falling: 65% reported having fallen in the previous year. 74% reported a fear of falling. Of participants who reported a fall, 56% were injured and 40% went to the emergency department.

Falls and number of health conditions: 56% of participants with 3 or fewer health conditions reported a fall, and 70% of participants with 4 or more health conditions reported a fall. Falls and participation: the US general population average score for ability to participate in social roles/activities is 50; our participants without falls scored 47.0, and our participants with falls scored 42.6. The US general population average score for satisfaction with participation in social roles/activities is 50; our participants without falls scored 45.3, and our participants with falls scored 42.5. Our participants, particularly those with falls, reported lower ability to participate in social roles/activities and lower satisfaction with their participation than the general US population. Key Points. People aging with long-term physical disabilities reported falling at higher rates than the general US 65+ population. People aging with long-term physical disabilities who fell had more health conditions than those who did not fall. People aging with long-term physical disabilities who fell reported lower ability to participate in their social roles/activities, and lower satisfaction with their participation, than those who did not fall.

Our preliminary analysis of data from Years 1 and 2 has suggested an additional hypothesis: that the age of onset of one's disabling condition shapes the disability experience. We are planning a manuscript to explore this hypothesis in detail.

Project 3: Developing and Pilot Testing an Intervention to Reduce Environmental Barriers and Promote Participation for People Aging with Disability

The purpose of Project 3 was to adapt an evidence-based intervention to reduce barriers and promote participation for people aging with long-term physical disabilities. Project 3 is complete, and the intervention is now being tested in a cohort of community-dwelling people aging with physical disability (see Project 4).

Project 4: Testing the Efficacy of the REBIL Intervention

Project 4 consists of conducting a randomized controlled trial to test REBIL, the intervention developed in Project 3. With 47 participants consented, we have finished recruitment for the study, and we are continuing to conduct the intervention in the home of each participant. So far, 15 participants have completed the intervention.

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:

Rebecca Bollinger

Rebecca Bollinger, OTD, OTR/L, is an Occupational Therapist at Washington University School of Medicine. She earned her bachelor’s degree in sociology from Emory University and her clinical doctorate in occupational therapy from Washington University in St. Louis. Rebecca has prior research experience with home modifications and assistive technology for adults and older adults, as well as family-based behavioral treatments for children and their families. She works in Dr. Stark’s Participation, Environment and Performance Laboratory on multiple studies, and with CEDAR Midwest, she is a co-coordinator for the Missouri Aging and Disability Research Network.

What We've Been Up To...

AHRQ Registration

The Missouri Aging and Disability Research Network has been registered with the Agency for Healthcare Research and Quality (AHRQ) as an affiliate in the AHRQ National PBRN Registry.

What's Coming

ACRM Annual Conference

We look forward to sharing our research at the 2021 ACRM Annual Conference, which will be held virtually September 26-29. CEDAR Midwest researcher Kerri Morgan will be a Plenary Speaker; she will discuss physical activity and disability.

In addition to Dr. Morgan's presentation, CEDAR Midwest post-doctoral researcher Szu-Wei Chen will present a poster on characteristics of participants in our cohort study who chose to complete the Year 2 survey via email versus those who chose to complete it over the phone.

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.

Copyright © 2019 Community Engagement for Disability and Aging Research Midwest, All rights reserved.

Our website is:
cedarmidwest.org

For technical assistance or more information, please call 314-289-4270 or email us at cedarmidwest@paraquad.org.

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