Evaluating survivorship-related communication gaps to develop a community health worker-led intervention for Hispanic/Latino young adult childhood cancer survivors and their families.

Abstract

10072 Background: Open communication among young adult childhood cancer survivors (YA-CCS), parents, and clinicians helps YA-CCS understand their cancer history, health risks, and survivorship care needs. However, Hispanic/Latino (H/L) YA-CCS families who prefer a language other than English face significant communication barriers during clinical encounters with English speaking clinicians. As part of an ongoing study aimed at developing an intervention to facilitate family-centered communication, we report here on interviews conducted with H/L YA-CCS and their parents. Methods: We held small group and individual interviews in English and Spanish with H/L YA-CCS (ages 18-25, ≥5 years post-diagnosis) and separately with parents of H/L YA-CCS. Transcripts were analyzed qualitatively using thematic analysis in Dedoose software. Participants were recruited through our collaboration with a community-based organization (CBO) and in a pediatric oncology clinic. Using a structured human-centered design process, we assembled a design team of community partners to ideate and prototype an intervention. Results: Ten YA-CCS (5 female, 5 male; all bilingual) and 10 parents (all female; Spanish-language preferred) participated, representing 13 families. YA-CCS were median age (min-max) 20.5 (18-25) years and 9 (6-15) years post-diagnosis. YA-CCS described knowledge gaps due to being excluded from parent-clinician conversations during treatment and ongoing avoidance of cancer discussions within families due to emotional burden. Many YA-CCS and parents shared that yearly survivorship clinic visits evoke stress, nervousness, and a sense of being unprepared, often leaving them overwhelmed. Some linked hesitancy to discuss cancer or ask questions during visits to their cultural norms. Guided by these insights, we leveraged our community-clinic partnership to co-develop an intervention to facilitate family-centered communication. In 3 design workshop sessions, CBO staff designed an early prototype for a “pre- and post-visit preparation” communication intervention, in which a community health worker meets with each YA-CCS-parent dyad before and after a survivorship clinic visit to help elicit questions, clarify topics, and debrief action items. Conclusions: Effective triadic communication is essential to bridge gaps in cancer survivorship care among H/L YA-CCS. Listening directly to H/L YA-CCS and parents identified communication barriers that are being addressed in the development of a culturally and linguistically tailored intervention to support families affected by cancer. Interviews and the intervention design process are ongoing and updated data will be presented at the meeting.