Leveraging a community-academic partnership to evaluate the needs of Latinx AYA cancer survivors.
Authors: Smith Stephanie M , Teer Anmol , Tolamatl Ariceaga Evelyn , Billman Elle , Goyal Anju , Benedict Catherine , Pecos-Duarte Caroline , Smith Mary , Montes Sandy , Rivera Luna Esmeralda , Ramirez Daniela , Boynton Heidi , Schapira Lidia 
Published: June 2023

10060

Background: Adult survivors of childhood cancer have an increased risk of late death and treatment-related comorbidities, yet < 20% of survivors receive guideline concordant risk-based care. Individual-level disadvantages and population-level measures of deprivation contribute to unequal health outcomes among survivors. We aimed to explore the experiences of adolescent/young adult (AYA) cancer survivors and their parents in a region in California with low socioeconomic status and high rates of non-English language preference. Methods: We formed a community-academic partnership with Jacob’s Heart, a nonprofit organization that provides material/psychosocial support to predominantly Hispanic/Latino (Latinx) families of children with cancer. Between Feb-July 2022, we conducted semi-structured interviews in-person or by video or phone with English- or Spanish-speaking AYA survivors of childhood cancer (age ≥15 years, ≥5 years post-diagnosis), parents, and Jacob’s Heart staff members, with assistance from certified medical interpreters. Data were analyzed qualitatively using reflexive thematic analysis based on grounded theory and the constant comparative method. Themes were refined through team discussions with our community partners. Results: We interviewed 12 AYAs (11 Latinx and bilingual), 11 parents (8 Latinx, 7 non-English preferred), and 7 organization staff (5 Latinx and bilingual). AYAs (5 female, 7 male) were median age (min-max) 20 (16-32) and 9 (5-19) years post-diagnosis; parents (9 female, 2 male) were median age 48 (40-60) and 14 (6-23) years post-child’s diagnosis. Cancer types were leukemia (6 AYAs, 9 parents), CNS tumors (1 AYA, 2 parents), other solid tumors (3 AYAs), lymphoma (2 AYAs). Key themes across interviews included gratitude and trust in the pediatric cancer care team and Jacob’s Heart staff, challenges obtaining healthcare outside of the pediatric cancer setting, lasting effects of cancer on the family (e.g., parental job loss, financial strain, impact on siblings, prolonged fear of recurrence in parents, unmet mental health needs in parents and AYAs), and communication barriers between Latinx families and clinicians (e.g., hesitancy to ask questions, overwhelmed by medical information) and between AYAs and parents (e.g., avoidance of talking about cancer history, cancer-related stigma, differing language preferences of AYAs and parents). Conclusions: Childhood cancer has long-lasting effects on families and those with fewer socioeconomic resources face additional burdens. Communication gaps experienced by Latinx families may be a target for intervention to improve AYA survivorship care. Future steps include sharing results with participants and partnering with the community to co-design interventions to facilitate triadic communication among Latinx AYAs, parents, and clinicians.