Engaging Caregivers As Research Partners: Understanding Kinship Caregivers Experiences and Perceived Impact of Virtual Peer Support Program

Background and Purpose: Engaging kinship caregivers in research as not only participants but also co-designers provides an essential—and often missing—lens in understanding a program’s impact in the community. Kinship Caregivers Connect (KCC) is a peer-led online and statewide support group for kinship caregivers in Ohio. KCC facilitates weekly support groups, including open discussions and psycho-educational trainings, to increase caregivers’ capacity, thus enhancing their own and their family’s well-being. Since its founding in 2020, KCC has prioritized community outreach, largely serving informal caregivers.

KCC has centered its work around lived experience as the highest form of a culturally responsive approach to community-based support. In line with this value, caregivers were included in the program’s research process. This symposium will describe this participatory action research process and share qualitative findings.

Methods. An online questionnaire was implemented to understand caregivers’ experience and the perceived impact of an online virtual support group. To understand the unique needs of the current population, detailed demographics were collected. Six open-ended questions were included that inquired about caregivers’ experience with the program, the perceived impact of participating for themselves and their families, what they value most about the program, and recommendations for changes.

The study was designed as a partnership between KCC, a third-party evaluation team, and two kinship caregivers as research partners. Caregivers were involved in the study design, including reviewing questions and providing feedback. Additionally, they served as the primary coders using Grounded Approach to interpret qualitative findings, which were then confirmed by a third reviewer. Themes were formed with unanimous agreement.

Results: Sixty-six participants who had attended at least one support group meeting completed the demographics and qualitative questions. A majority of caregivers were grandparents, with a variety of experience in their caregiving role. Caregivers had attended the group for variable amounts of time since its inception in 2020, with 17% attending since 2020 and 23% in 2024. Themes describe key experiences with KCC and include peer support, learning, impact on family well-being, and unique components to the KCC model. Peer support was identified as the most salient component of KCC, which included having a safe space to share, not feeling alone, and having a sense of family with the group. Learning through presentations and other caregivers was also identified as a key component, including gaining a variety of information, strategies, and resources relevant to their roles. Caregivers shared a positive overall impact on their own well-being, their parenting approach, and their family’s well-being. This included gaining a sense of confidence, hope, and understanding toward the child in their care. Finally, caregivers shared key components and accessibility considerations of the KCC virtual model and recommendations for improving the program.

Conclusion/Implications: Overall, this study explored the acceptability and perceived impact of an online support group for kinship caregivers using a participatory action approach. Findings highlight key components for supporting caregivers in a community-based setting. Caregivers with lived experience were key research partners that brought meaning and provided important perspective to the study results.