Development and implementation of a community-based research network

Abstract

Introduction: People aging with long-term physical disabilities (PAwLTPD), meaning individuals with onset of disability from birth through midlife, often require long-term support services (LTSS) to remain independence. The LTSS system is fragmented into aging and disability organizations with little communication between them. In addition, there are currently no evidence-based LTSS-type programs listed on the Administration for Community Living website that have been demonstrated to be effective for PAwLTPD. Because of these gaps, we have developed a community-based research network (CBRN), drawing on the practice-based research network model (PBRN), to bring together aging and disability organizations to address the lack of evidence-based programs for PAwLTPD. Materials and Methods: Community-based organizations serving PAwLTPD across the state of Missouri were recruited to join the CBRN. A formative process evaluation of the network was conducted after a year to evaluate the effectiveness of the network. Results: Nine community-based organizations across the state of Missouri joined the CBRN. CBRN members include three centers for independent living (CILs), three area agencies on aging (AAAs), one CIL/AAA hybrid, one non-CIL disability organization, and one non-AAA aging organization. To date, we have held seven meetings, provided educational opportunities for CBRN members, and launched an inaugural research study within the CBRN. Formative evaluation data indicate that CBRN members feel that participation in the CBRN is beneficial. Conclusion: The PBRN model appears to be a feasible framework for use with community-based organizations to facilitate communication between agencies and to support research aimed at addressing the needs of PAwLTPD.

Aging with Disability Symptoms and Ability to Participate in, and Satisfaction with, Social Participation among Persons Aged 45–64

“…The assessments for all three time points consist of self-reports of health, disability, and social support characteristics; activity, participation, and environmental factors; and longterm service and support use. Measures were selected in consultation with the CBRN [21]. All survey questions were identical for online and telephone administrations.…”

“…It is anchored in a community-based research network (CBRN) composed of regional aging and disability organizations. A larger goal and commitment of our center (CEDARMidwest.org) is to help the CBRN and other aging and disability organizations identify instruments and tools to efficiently collect meaningful data, leverage their existing resources, and identify interventions that can help them support, sustain, and/or restore individual participation in important life activities [21].…”

A protocol for removing environmental barriers to independent living (REBIL): An adapted evidence-based occupational therapy intervention to increase community participation for individuals aging with long-term physical disabilities

“…To reflect the larger PAwLTPD population, we are recruiting potential participants through various sources, including (1) members of a statewide community-based research network (Minor et al, 2020), (2) participants who have completed a survey from a related prior project, and (3) word of mouth. A trained research team member will contact participants and use a phone script to provide detailed information about the study, discuss potential problems that could interfere with participation, answer any questions, and screen their eligibility.…”

Aging with long-term physical disability: Cohort analysis of survey sample in the U.S.

“…To enroll, participants had to be aged 45-65 years, have experienced physical disability for a duration of ≥5 years, speak English, and autonomously provide consent. Purposive recruitment occurred through a CBRN, 23 local events, and social media. The organizations and agencies in the CBRN shared IRB-approved information about the study to their clients and participants through e-mail, mailed letters, and/or posts on their social media platforms.…”

“…22 In our study, we actively sought to create a broader sample base by increasing the proportion of non-White participants and by recruiting participants based on self-report of physical disability, regardless of diagnosis. We worked closely with our Community-Based Research Network (CBRN), 23 a network of aging and disability providers and advocacy groups located in the state of Missouri in the United States, that work together to close the gap in the availability of evidencebased practices for persons AwD. The CBRN supported this cohort by identifying areas of importance for data collection, assisting with recruitment, and strategizing about increasing recruitment of participants of specific groups, including men and non-White individuals.…”