Extending Care Beyond the Clinic: Community-Based Support for Hispanic/Latino Families After Childhood Cancer

Families of children with cancer often face long-term challenges that extend well beyond active treatment. These challenges can be intensified for families living in rural, socioeconomically disadvantaged regions, particularly among Hispanic/Latino populations and those with non-English language preference. Barriers related to language, access to care, and health care navigation contribute to disparities in survivorship outcomes and ongoing support.

To better understand these experiences, researchers conducted a qualitative study in partnership with Jacob’s Heart Children’s Cancer Support Service, s a community-based organization (CBO) serving families in a rural region of California with a majority Hispanic/Latino population and high rates of non-English language preference. The organization provides both material (transportation, groceries, etc.) and psychosocial support to families of children with cancer.

The study explored post-treatment needs and the role of community-based support among adolescent and young adult (AYA) survivors (≥5 years post-diagnosis), their parents, and CBO staff. Researchers identified key challenges and areas where community-based interventions can meaningfully improve support and reduce disparities.

Findings highlight that the impact of childhood cancer extends across the family unit and persists long after treatment, with language, rurality, and socioeconomic disadvantages shaping families’ experiences of care.

This qualitative study focused on understanding lived experiences and identifying actionable insights for improving care delivery and support.

Participants included:

• 12 AYA cancer survivors (majority Hispanic/Latino, predominantly bilingual)
• 11 parents (many with non-English language preference)
• 7 CBO staff members (majority bilingual and Hispanic/Latino)

Key themes identified across interviews included:

• Challenges navigating the health care system after treatment completion (e.g., accessing primary care and mental health care, moving from pediatric to adult care without strong guidance from non-English language preferred parents)
• Communication barriers within the patient-parent-clinician triad
• Long-term negative impacts on family dynamics and mental health
• Geographic and linguistic barriers to ongoing support

Importantly, the study found that community-based support played a critical role in mitigating these challenges. The CBO functioned as a safety net, helping families navigate care, access resources, and maintain continuity of support beyond the clinical setting.

Rather than replacing clinical care, community-based support enhanced families’ ability to engage with the health care system, understand care processes, and navigate complex survivorship needs.

Interviews with families, CBOs, and clinicians are a relatively low-lift and effective way to understand the survivorship issues facing Hispanic families (who are generally underrepresented in research), and to coordinate ongoing support in partnership with CBOs that extends beyond clinical settings and addresses social determinants of health.

Key elements that may be scalable include:

• Partnership with community-based organizations serving culturally and linguistically diverse populations
• Integration of bilingual and bicultural support services
• Community-partnered program design grounded in lived experience
• Use of qualitative insights to guide tailored interventions

However, scalability depends on:

• Availability of community-based organizations with established trust
• Workforce capacity for bilingual and culturally responsive care
• Institutional recognition of the value of non-clinical support systems

The sustainability of community-based support models depends on:

• Long-term funding for community-based organizations
• Continued integration of CBOs into healthcare delivery systems
• Investment in bilingual and culturally responsive workforce development
• Recognition of long-term psychosocial and navigation support as essential components of care for childhood cancer survivors and their families

While this study focused on one region, it highlights the broader importance of sustaining partnerships that address both the medical and social needs of families.

• Partner with trusted community-based organizations to extend care beyond clinical settings
• Recognize that survivorship needs persist long after treatment ends
• Provide bilingual, culturally responsive communication across all stages of care
• Address the needs of the entire family, not just the patient
• Incorporate navigation and psychosocial support into survivorship care
• Be mindful of geography and language barriers, and be intentional about building clinical structures that support access to care, such as through partnerships with CBOs
• Leverage community expertise to inform program design and implementation

Stephanie M. Smith, MD, MPH

Division of Hematology, Oncology, Stem Cell Transplantation & Regenerative Medicine

Interdisciplinary Research Team: Department of Pediatrics, Stanford University School of Medicine

Community Partner: Jacob’s Heart Children’s Cancer Support Services

Participants:

Adolescent and young adult childhood cancer survivors, parents, and community-based organization staff