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.
Childhood cancer survivors are at elevated risk of poor health outcomes as they age due to late effects from past cancer treatments. Lifelong risk-based survivorship care is recommended; however, those who lack insurance, have lower income and education, or live in a socioeconomically disadvantaged area are less likely to receive this care, contributing to health disparities. Working toward the goal of improving equitable access to care for cancer survivors, the Stanford Cancer Survivorship Program has partnered with Jacob’s Heart, a nonprofit community organization that supports families of children with cancer in California’s Salinas Valley, a socioeconomically disadvantaged region with a large Latinx farmworker population and high rates of limited English proficiency. Jacob’s Heart provides material resources (financial, food, transportation) and psychosocial support (1:1 and group counseling, social activities) to families during treatment. Together with Jacob’s Heart, we are conducting a needs assessment in accordance with community-based participatory research principles. We present preliminary findings of a qualitative study designed to identify post-treatment concerns, needs, and barriers to cancer survivorship care in the Salinas Valley communities. Semi-structured interviews were conducted with Jacob’s Heart staff, adolescent/young adult (AYA) cancer survivors, and parents of cancer survivors. Eligible participants were ≥5 years post cancer diagnosis, ≥15 years of age, spoke English or Spanish, and received services from Jacob’s Heart during their treatment. The Jacob’s Heart team led recruitment using purposive sampling; 7 staff members, 19 AYA cancer survivors and 13 parents of cancer survivors were recruited. Interviews were conducted in-person or by video or telephone, in English or Spanish with professional interpreters if needed, and transcribed verbatim. Interview topics included demographics, post-treatment healthcare experiences, challenges and concerns related to prior treatment, sources of support, and suggestions for resources. Data were analyzed qualitatively using reflexive thematic analysis based on grounded theory and the constant comparative method. Preliminary findings indicate concerns among the staff around helping families adjust to life post-treatment and helping AYAs transition to independence as young adults. AYAs voiced communication challenges around survivorship topics (overwhelmed by too much information, worried about future health problems, yet hesitant to discuss with healthcare teams) and expressed the need for age-specific social connections and peer support. Further analysis of AYA and parent interviews is ongoing and will be presented at the time of the meeting. This study highlights the strength of a community-academic partnership to understand the lived experiences of AYA cancer survivors and their families and to identify opportunities to improve care. Findings will inform future collaborative interventions and projects that can be implemented in the community to address the unmet needs. Citation Format: Stephanie M. Smith, Caroline Pecos-Duarte, Evelyn Tolamatl Ariceaga, Elle Billman, Anmol Teer, Catherine Benedict, Mary Smith, Sandy Montes, Esmeralda Rivera, Daniela Ramirez, Heidi Boynton, Lidia Schapira. Understanding unmet needs of adult survivors of childhood cancer in California’s Salinas Valley: A community-academic partnership to develop programs for families after cancer treatment [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B042.
BACKGROUND:Individual- 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.PROCEDURE:We 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.RESULTS:Twelve 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.CONCLUSIONS:Childhood 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.