Social support dynamics within parent-AYA cancer survivor dyads in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region.

Abstract

10071 Background: Childhood cancer survivors and their parents often face psychological, financial, and informational challenges as survivors transition to adolescent/young adult (AYA) age, which can be exacerbated by socioeconomic disparities. Social support can positively impact the trajectory of AYA survivors and their parents by facilitating post-traumatic growth and wellbeing and reducing psychological distress. The aim of this study was to examine social support dynamics within AYA-parent dyads by comparing their support needs and gaps. Methods: This qualitative study was conducted in collaboration with a community-based organization (CBO) serving a predominately socioeconomically disadvantaged, Hispanic/Latino (H/L), and rural population of families affected by childhood cancer in California. English- and Spanish-speaking AYA childhood cancer survivors (≥15 years old, ≥5 years from diagnosis) and parents were interviewed. Transcripts were analyzed qualitatively using applied thematic analysis. Results: Seven AYA-parent dyads (6 H/L) participated in the study. AYAs (6 male, 1 female) were median (min-max) age 19 (16-23) and 14 years post diagnosis (6-17). Parents (1 male, 6 female) were predominantly Spanish-speaking (5/7). Forms of social support fell into emotional, instrumental (i.e. tangible assistance such as financial help), and informational domains. Although family and faith were shared sources of emotional support for parents and AYAs, parents were more likely to discuss fractured family support structures and unmet emotional needs. In contrast AYAs universally identified their parents as consistent sources of emotional support. Parents also more commonly discussed gaps in instrumental support, which were exacerbated by being a single parent and lacking a local extended family network after immigrating to the United States. Parents were frequently the primary source of informational support for their children and AYAs often lacked knowledge regarding their cancer diagnosis and treatment course. Two AYAs expressed ambivalence about receiving more survivorship-focused information due to it bringing up negative emotions around fear of recurrence. Parents frequently expressed worry about their child’s readiness to transition to adult care. Conclusions: Parents experienced gaps in emotional and instrumental social support that were not noted by AYAs, suggesting that parents protected their children from these experiences. Parents continued to serve as primary sources of informational support for AYAs even as they transitioned out of pediatric care. Our findings demonstrate the opportunity to build upon supportive parent-AYA relationships through dyad-focused education and counseling, which may improve readiness to transition to adult-focused survivorship care.