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

PROJECT SUMMARY 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 who prefer a

language other than English. Language barriers and other social determinants of health (income, education, race/ethnicity) contribute to health disparities among childhood cancer survivors, yet very few interventions have addressed these disparities. Bilingual community health workers help connect underserved 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 barriers and improve survivorship care among YA-CCS at risk for health disparities. To address these gaps, the applicant Dr. Smith will leverage her partnership with a

community organization serving predominantly Hispanic/Latino (Latinx) families of children with cancer in a region in California with low socioeconomic status and high rates of non-English language preference. The proposed study will develop, pilot test, and refine a culturally and linguistically tailored family-centered

communication intervention for Latinx YA-CCS and parents/caregivers. Specifically, the study aims to 1) Evaluate survivorship-related communication gaps and linguistic and cultural communication preferences among Latinx YA-CCS and parents through English and Spanish 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-engaged 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 community-engaged research, are anticipated to launch Dr. Smith’s independent career

leading patient-centered, community-engaged clinical research studies to reduce health disparities among childhood cancer survivors. This research fills an important gap by involving a novel population that is vulnerable to health disparities (Latinx YA-CCS) and addressing a novel intervention target (triadic communication).