Community Engagement for Disability and Aging Research (CEDAR)
Midwest
Winter 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.
Current Projects
Community-Based Research Network
Our community-based research network, the Missouri Aging and Disability Research Network (MADRN), is a network of community organizations that provide services for older adults and people with disabilities in Missouri. The goal of MADRN is to bring together service providers for the aging population and service providers for people with disabilities to better meet the needs of individuals who are aging with disabilities. We surveyed our member organizations after MADRN was formed and again one year later to determine what has worked so far and ways we can improve this community-based research network.

The lessons learned from this survey were the importance of:
  • Building trust to recruit more organizations into the network
  • Finding common ground
  • Respect for people's time
  • Communication—especially finding convenient modes of communication—is key
Challenges and areas where the network model can be improved include:
  • Meeting needs of member organizations
  • Dealing with conflicts of interest
  • Finding funding
  • Partnering with more academic institutions
This feedback will help us continue to build and strengthen MADRN. We look forward to continued feedback from MADRN member organizations as we continue to develop the community-based research model. 
Scoping Review on Participation of People Aging with Disabilities in Clinical Research
Adults and older adults with disabilities have a higher incidence of chronic conditions and health-related disparities, and they are at greater risk for developing secondary conditions, than their peers without disabilities.[1] However, while adults and older adults with disabilities are among the greatest potential beneficiaries of health care services, they are often absent from clinical trials.[2,3]

Randomized, double-blind clinical studies are the basis for both clinical and policy decisions on health-care priorities. International ethical guidelines for health research state that exclusion criteria for research participants should be scientifically and ethically justified rather than conveniently or arbitrarily chosen[4], but research does not always meet this guideline. Gathering evidence about the exclusion of people with disabilities from clinical trials is the first step toward addressing this problem. Therefore, we conducted a scoping review of behavioral clinical trials to determine the extent to which adults and older adults with diagnostic/health conditions were excluded, and we evaluated whether the exclusions were strongly justified, poorly justified or unjustified.

We looked at the inclusion and exclusion criteria of 158 clinical behavioral trials that focused on adults and older adults. We used the NIH Policy and Guidelines on The Inclusion of Women and Minorities[5] to categorize the exclusion criteria as “strongly justified” if a specific rationale for the exclusion was provided (e.g., exclusion of individuals with a cognitive impairment that would make following complicated study instructions difficult), “poorly justified” if people with a diagnosis/health condition were excluded for reasons not explicitly linked to their condition (e.g., that it would take too much time to include people with a cognitive impairment), and “unjustified” if the researchers excluded a health condition without providing their rationale.
A bar chart showing the distribution of exclusion criteria as "strongly justified," "poorly justified," or "unjustified." The "unjustified" category is significantly larger than the "strongly justified" category, while relatively few exclusions were poorly justified.
We found that 89.1% of trials excluded at least one health condition without providing any justification. The most common category of health condition to be excluded was mental health conditions, which were excluded in 76.7% of trials. General or unspecified medical conditions (e.g., “medical illness,” “health problems,” “chronic condition”) were excluded in 35.7% of trials, cardiovascular conditions in 27.9%, and physical impairments in 24%. Diagnostic or health conditions were excluded with strong justification just 24.1% of the time.

As the population—including people with disabilities—ages, service networks that provide resources to older adults and people with disabilities are experiencing new challenges and demands. However, the evidence to inform clinical practice, community programs and public policy to support positive aging for people with disabilities is still limited. More information about the health and participation of adults and older adults with disabilities is needed so health-care professionals can address the needs of this growing population.
A bar chart showing the five most frequently excluded types of diagnosis and the justification status (strongly justified, poorly justified, or unjustified) for each diagnosis type. Mental health conditions were the most frequently excluded diagnostic category, with a significant number of exclusions being unjustified. The other most commonly excluded diagnosis categories were "unspecified medical," "cardiovascular," "physical impairment," and "under treatment other than for mental health."
The results of our scoping review support the need to develop strategies to minimize the exclusion of adults and older adults with disabilities from clinical research. We recommend careful consideration of inclusion and exclusion criteria in the study design phase, as well as inclusion of disability as a demographic variable, such as age, gender, race or ethnicity, to precisely translate research findings and health outcomes for people aging with disability.
1. Iezzoni LI. Eliminating health and health care disparities among the growing population of people with disabilities. Health Aff. 2011;30(10):1947-1954.
2. Meyers AR, Andresen EM. Enabling our instruments: accommodation, universal design, and access to participation in research. Arch Phys Med Rehabil. 2000;81:S5-S9.
3. Feldman MA, Battin SM, Shaw OA, Luckasson R. Inclusion of children with disabilities in mainstream child development research. Disabil Soc. 2013;28(7):997-1011.
4. CIOMS, WHO. International ethical guidelines for health-related research involving humans. Geneva: CIOMS; 2017.
5. NIH. NIH policy and guidelines on the inclusion of women and minorities as subjects in clinical research. Published 2001. 
Consumer Focus Group Study
Over the course of the first year, the CEDAR Midwest team held focus groups and key informant interviews in order to adapt an evidence-based intervention (originally developed for people who have had a stroke) for people aging with disabilities. The intervention combines teaching self-management techniques for health and wellness with home hazard removal to prevent falls. The fourth CEDAR Midwest project will be to implement the adapted intervention with a group of people who are aging with disabilities to determine the effects of the intervention and any further changes that need to be made. 

The focus group and interview sessions, consisting of  people aging with disabilities and experts in the fields of aging and disability, revealed several important features that the modified intervention should address. Recommendations included:
  • Further delve into the the fall prevention component of the intervention, as falls are a highly prevalent risk for older adults and individuals with mobility and vision limitations
  • Emphasize chronic disease management in the self-management component of the intervention
  • Incorporate peer support and technical assistance to help intervention recipients access information.
The intervention is currently being refined based on this feedback, and we look forward to beginning Project 4: implementation of the revised program.
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:
Michelle Putnam, PhD, 

Michelle Putnam is a Professor and Director of the PhD Program at Simmons College School of Social Work in Boston, Massachusetts. Dr. Putnam has interdisciplinary training in aging and disability. She holds a bachelor's degree in history from the University of Michigan, Ann Arbor; a master's in gerontological studies from Miami University in Oxford, Ohio; and a doctorate in social welfare from the Luskin School of Public Affairs at the University of California, Los Angeles. She served as a NIDRR (National Institute on Disability and Rehabilitation Research)–funded Postdoctoral Fellow at the Rehabilitation Research and Training Center on Health and Wellness at Oregon Health and Sciences University in Portland, Oregon.

Dr. Putnam’s research focuses on the intersections of aging and disability, with particular emphasis on understanding how public programs and policies meet the needs of persons aging with disability. Within this area, her work examines many issues including collaborations between aging and disability service providers, professional and organizational capacity to serve the aging-with-disability population within current aging and disability service systems, and the long-term service and support needs of persons aging with disabilities. Other areas of interest include the role of activity portfolios in fostering engagement and health and well-being among older adults with disabilities. Dr. Putnam is a Fellow of the Gerontology Society of America, member of the National Academy of Social Insurance, serves as Editor-in-Chief of the Journal of Gerontological Social Work and is currently co-editing the first Handbook on Aging with Disability for Routledge publishing company.

What We've Been Up To...
ACRM Conference
The American Congress of Rehabilitation Medicine (ACRM) held its 96th Annual Conference November 5-8. The ACRM Annual Conference is the largest conference in the world dedicated to interdisciplinary rehabilitation research. CEDAR Midwest researcher Kerri Morgan attended the conference and presented a poster on the impact of falls on participation for people aging with a long-term physical disability. 
A woman in a wheelchair sits in front of an academic poster titled "Impact of falls on the participation of people aging with a long-term physical disability"

What's Coming

NARRTC Annual Meeting
CEDAR Midwest researcher Brittany Minor will present a poster at the NARRTC Annual Meeting April 2-3 in Washington, D.C. The mission of NARRTC is to "improve the quality of life, independence of life choices, and the inclusion of individuals with disabilities and their families through relevant research, training, technical assistance, knowledge translation, development and demonstration activities." The NARRTC Annual Meeting provides an opportunity for grantees of the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to share their research findings and strategies for knowledge translation with other grantees and NIDILRR representatives.
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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