A qualitative study of childhood cancer families’ post‐treatment needs and the impact of a community‐based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region

Abstract

BackgroundIndividual‐ and population‐level socioeconomic disadvantages contribute to unequal outcomes among childhood cancer survivors. Reducing health disparities requires understanding experiences of survivors from historically marginalized communities, including those with non‐English language preference.ProcedureWe partnered with a community‐based organization (CBO) serving families of children with cancer in a rural region in California with low socioeconomic status and majority Hispanic/Latino (H/L) residents. We interviewed English‐ and Spanish‐speaking adolescent/young adult (AYA) childhood cancer survivors (≥15 years old, ≥5 years from diagnosis), parents, and CBO staff to evaluate post‐treatment needs and impact of CBO support. Data were analyzed qualitatively using applied thematic analysis. Themes were refined through team discussions with our community partners.ResultsTwelve AYAs (11 H/L, 11 bilingual), 11 parents (eight H/L, seven non‐English preferred), and seven CBO staff (five H/L, five bilingual) participated. AYAs (five female, seven male) were of median (min–max) age 20 (16–32) and 9 (5–19) years post diagnosis; parents (nine female, two male) were age 48 (40–60) and 14 (6–23) years post child's diagnosis. Themes included challenges navigating healthcare, communication barriers among the parent–AYA–clinician triad, and lasting effects of childhood cancer on family dynamics and mental health. Subthemes illustrated that language and rurality may contribute to health disparities. CBO support impacted families by serving as a safety‐net, fostering community, and facilitating H/L families’ communication.ConclusionsChildhood cancer has long‐lasting effects on families, and those with non‐English language preference face additional burdens. Community‐based support buffers some of the negative effects of childhood cancer and may reduce disparities.

Quality of life for rural and Appalachian pediatric brain tumor survivors in Ohio and Kentucky.

“…Although our limited data precluded further analysis of factors that contributing to this disparity, we speculate that rural survivors may live further from peers and have fewer opportunities for interactions outside of school, thereby resulting in lower quality friendships and less social connectedness. It is also possible that access to specific community resources may be reduced for survivors in rural and Appalachian regions (e.g., social skills groups, afterschool programs; S. M. Smith et al, 2024), which may exacerbate isolation.…”