Leveraging a community-academic partnership to pilot a family-centered communication intervention for young adult childhood cancer survivors

Stanford University, Stanford CA

Investigators

Linked publications, trials & patents

Abstract

Adult survivors of childhood cancer face a lifetime of health risks due to past cancer treatments, with an estimated 80% experiencing at least one severe or life-threatening chronic health condition by age 45. To receive the recommended lifelong survivorship care, young adult childhood cancer survivors (YA-CCS) need to develop skills to manage their own care as they age. Triadic communication among YA-CCS, parents/caregivers, and clinicians is essential for YA-CCS to learn about their cancer history and develop these skills; however, communicating about survivorship topics is complex and even more challenging for families with different language preferences. Language and other social determinants of health (income, education, rurality) contribute to adverse health outcomes among childhood cancer survivors, yet very few interventions have addressed this. Community health workers help connect communities with services such as cancer screening but have not been widely employed in cancer survivorship settings. New strategies are critically needed to reduce communication gaps and improve survivorship care among YA-CCS at risk for poor health. To address these gaps, the applicant Dr. Smith will leverage her partnership with a community organization serving all families of children with cancer in a rural, low-income region in California. The proposed study will develop, pilot test, and refine a tailored family-centered communication intervention for YA-CCS and parents/caregivers. Specifically, the study aims to 1) Evaluate survivorship-related communication gaps and preferences among YA-CCS and parents through focus groups; 2) Develop a community health worker-led intervention to facilitate communication among YA-CCS, parents, and clinicians, applying principles of community-based participatory research to involve cancer survivors, parents, and community members in an iterative intervention design process; and 3) Pilot test the communication intervention to evaluate feasibility and acceptability among 18 YA-CCS–parent dyads and refine the intervention based on feedback. Through leading this study, Dr. Smith will develop advanced skills in community-based participatory research, family-centered communication, and intervention science. She will do so through structured training with support from a strong mentorship team with expertise in community-based participatory research, communication, behavioral interventions, and cancer survivorship. Dr. Smith’s mentorship and training plan, combined with Stanford’s robust institutional support for research, are anticipated to launch Dr. Smith’s independent career leading patient-centered, community-based clinical research studies to improve health outcomes among childhood cancer survivors. This research fills an important gap by involving a novel population and addressing a novel intervention target (triadic communication).