Awareness, Accessibility, Authenticity, and Appropriateness: Multilevel Determinants of Research Engagement Among Underrepresented AYA Cancer Survivors
Lauren V. Ghazal, Jacob Dogtir, J. Lea Brown, Rachel Brandon, Meiyan Chen, Nina Francis-Levin, Robin Voisine, Christabel K. Cheung, Addison Rappaport, Brad Zebrack, Anao ZhangIntroduction
Adolescent and young adult (AYA) cancer survivors (ages 15–39 at diagnosis) who identify as sexual and gender minorities [SGM] and/or Black, Indigenous, and Persons of Color [BIPOC]) experience survivorship challenges compounded by discrimination, mistrust, and culturally incongruent care. These factors contribute to inequities in health outcomes and research participation. This qualitative study explored the experiences of underrepresented AYA cancer survivors and key stakeholders in research engagement.
Methods
Participants were recruited through five US-based academic cancer centers and five community-based organizations. Interviews were conducted via two-way video conferencing, and transcripts were analyzed using inductive thematic analysis. A Community Advisory Panel (CAP) consisting of 10 underrepresented AYAs co-developed semi-structured interview guides and contributed to study interpretation.
Results
Twenty-eight participants completed interviews (n=22 survivors, n=5 healthcare professionals, n=1 caregiver). Participants identified as BIPOC (64.3%), SGM (46.4%), and both (23.1%). Four themes shaped research engagement: (1) Awareness (visibility and pathways to research opportunities); (2) Accessibility (emotional, logistical, and institutional feasibility); (3) Authenticity (trust and perceived legitimacy); and (4) Appropriateness (alignment with identity and lived context).
Conclusion
Research engagement among underrepresented AYA cancer survivors is shaped by interconnected multilevel factors. Advancing equity requires moving beyond recruitment to redesign research approaches that enhance visibility, reduce structural barriers, build trust, and align participation with AYAs’ identities and lived experiences.