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Peer-reviewedCC BY-NC 4.0Cancer Control: Journal of the Moffitt Cancer Center

Awareness, Accessibility, Authenticity, and Appropriateness: Multilevel Determinants of Research Engagement Among Underrepresented AYA Cancer Survivors

  • Lauren V. Ghazal1,2
  • Jacob Dogtir1
  • J. Lea Brown1
  • Rachel Brandon3
  • Meiyan Chen4
  • Nina Francis-Levin3
  • Robin Voisine5
  • Christabel K. Cheung6
  • Addison Rappaport3
  • Brad Zebrack3
  • Anao Zhang7
7 affiliations
  1. 1University of Rochester School of Nursing and Health Sciences, Rochester, NY, USA
  2. 2Cancer Prevention and Control, Wilmot Cancer Institute, Rochester, NY, USA
  3. 3University of Michigan School of Social Work, Ann Arbor, MI, USA
  4. 4University of Texas at Austin School of Social Work, Austin, TX, USA
  5. 5Pediatric Hematology/Oncology & Blood and Marrow Transplant, Cleveland Clinic, Cleveland, OH, USA
  6. 6University of Maryland School of Social Work, Baltimore, MD, USA
  7. 7University of Washington School of Social Work, Seattle, WA, USA
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Abstract

Introduction: 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.

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Cite

BibTeXRIS
BibTeX
@article{ghazal2026awareness,
  title = {{Awareness, Accessibility, Authenticity, and Appropriateness: Multilevel Determinants of Research Engagement Among Underrepresented AYA Cancer Survivors}},
  author = {Lauren V. Ghazal and Jacob Dogtir and J. Lea Brown and Rachel Brandon and Meiyan Chen and Nina Francis-Levin and Robin Voisine and Christabel K. Cheung and Addison Rappaport and Brad Zebrack and Anao Zhang},
  journal = {Cancer Control: Journal of the Moffitt Cancer Center},
  year = {2026},
  month = sep,
  doi = {10.1177/10732748261494049},
  url = {https://doi.org/10.1177/10732748261494049},
  note = {CC BY-NC 4.0},
}
RIS
TY  - JOUR
TI  - Awareness, Accessibility, Authenticity, and Appropriateness: Multilevel Determinants of Research Engagement Among Underrepresented AYA Cancer Survivors
AU  - Lauren V. Ghazal
AU  - Jacob Dogtir
AU  - J. Lea Brown
AU  - Rachel Brandon
AU  - Meiyan Chen
AU  - Nina Francis-Levin
AU  - Robin Voisine
AU  - Christabel K. Cheung
AU  - Addison Rappaport
AU  - Brad Zebrack
AU  - Anao Zhang
PY  - 2026
DA  - 2026/09/29
JO  - Cancer Control: Journal of the Moffitt Cancer Center
DO  - 10.1177/10732748261494049
UR  - https://doi.org/10.1177/10732748261494049
AB  - Introduction: 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.
SN  - 1073-2748
SN  - 1526-2359
ER  -