Abstract B042: 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
Authors: Smith Stephanie M. , Pecos-Duarte Caroline , Ariceaga Evelyn Tolamatl , Billman Elle , Teer Anmol , Benedict Catherine , Smith Mary , Montes Sandy , Rivera Esmeralda , Ramirez Daniela , Boynton Heidi , Schapira Lidia 
Published: January 2023

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.