Building a community-academic partnership to expand services for childhood cancer survivors in a rural, low-income region in California.

Abstract

360 Background: Community-engaged research is an effective approach to address health disparities that is well-established in the public health domain and has not been widely applied in childhood cancer survivorship. We present our multi-year experience building a community-academic partnership and community-engaged childhood cancer survivorship research portfolio. Methods: We have developed a partnership between Jacob’s Heart Children’s Cancer Support Services, a nonprofit community-based organization (CBO) and an academic pediatric cancer survivorship team, with the goal of improving health outcomes for childhood cancer survivors and their families in the Salinas Valley, a rural, low-income region in California with majority Hispanic/Latino/a/e residents. Our partnership process is guided by principles of community-based participatory research, prioritizing trust and involving community members as equal partners in all phases of research. Results: In year 1 (2021-2022), we held successive meetings which identified common goals and shared values, established the collaboration, and sought funding to advance our goals. In year 2 (2022-2023), with internal grant funding, we conducted a qualitative needs assessment interviewing childhood cancer survivors, parents, and CBO staff. Teamwork enriched the data analysis and allowed us to identify problems in communication as an area of need, which directly informed subsequent grant proposals. In year 3 (2023-2024), with external funding we began a multi-year study to understand and improve survivorship-related communication among Hispanic/Latino/a/e young adult childhood cancer survivors, their parents, and clinicians. Current and future projects include collaborative design and pilot testing of a novel communication intervention, formation of a dedicated community advisory board, and a CBO-driven program evaluation. Findings from our community-engaged studies have prompted new sets of research questions and illustrate opportunities for institutional change in the clinic setting. In parallel, the CBO has leveraged research findings in real-time to identify barriers to seeking support among childhood cancer survivors and families, and adapted and improved programming for families in response. Through our joint research portfolio, we have incorporated training and mentorship for staff at the CBO and medical trainees at the academic center. Conclusions: A community-academic partnership in a rural, low-income region has the potential to reduce health disparities and improve childhood cancer survivors’ health outcomes through collaborative program development and community-engaged research. Fueled by mutual investment and strong momentum, our partnership facilitates an interconnected cycle of research and practice change that is grounded in community needs.