Exploring sexual and reproductive health among adolescent and young adult patients with cancer: A patient-oriented qualitative study using novel, serial focus groups.
Authors: Niki Oveisi, Vicki Cheng, Dani Taylor, Haydn Bechthold, Mikaela Barnes, Norman Jansen, Helen McTaggart-Cowan, Lori A. Brotto, Stuart Peacock, Gillian E. Hanley, Sharlene Gill, Meera Rayar, Amirrtha Srikanthan, Mary De Vera
Journal: Journal of Clinical Oncology (2024)

e23080 Background: While treatment advances for adolescent and young adult (AYA, ages 15 - 39) cancers are improving survival, there is a lack of information and support regarding impacts of AYA cancer on sexual and reproductive health (SRH) during and after treatment. Our study explored SRH experiences of AYA cancer patients using novel, serial focus groups. Methods: With online and in-person approaches, we recruited folks who: 1) Were diagnosed with cancer at age 15 – 39; 2) Reside in Canada; and 3) Are over 18. Participants were grouped into cohorts based on akin characteristics (e.g., sex, stage). Each cohort engaged in three focus groups, mimicking support groups, to foster community and trust. An interview guide was iteratively developed with patient research partners. We used framework analysis to identify recurring themes and patterns, offering full insight of participants’ SRH perspectives and experiences from deductive and inductive views. Results: We recruited 4 focus group cohorts, with 6–10 participants each (N = 24 females, 6 males), representing various cancer types (e.g., pelvic, hematologic) and stages (1–4). Cohorts had representation of transgender (n = 1) and gender diverse folks (n = 3), non-heterosexual sexual orientation (n = 11), and racial diversity (n = 9). We identified three themes describing participants’ experiences: 1) internally (“looking inwards”) – impact of AYA cancer on SRH; 2) externally (“looking outwards”) – impact of cancer on interpersonal relationships; and 3) role of the healthcare system. Internally, folks described complex impacts of AYA cancer on themselves, revealing shifting definitions, perspectives, expectations, and goals of SRH over time. Dynamic interplays of AYA cancer also surfaced, unveiling mental, physical, and financial health changes that positively or negatively impacted participants’ SRH and influenced short and long-term well-being. Externally, changes in romantic relationships and family planning underscored the complex interplay of societal pressures on SRH and reproductive choices. Regarding the healthcare system, findings highlight facilitators (i.e., self-advocacy, nurses, recent pregnancy, provider with similar identity, etc.) and barriers (i.e., gender, SRH stigma, age, fertility treatment costs, heteronormativity, SRH deprioritization, etc.) that influence access to appropriate and available SRH resources and support. Conclusions: SRH challenges have significant internal and external impacts among AYA cancer patients and their interpersonal relationships during and after treatment. By understanding their SRH experiences throughout their cancer care, providers and the healthcare system can identify opportunities to implement SRH care more effectively into the cancer care continuum, significantly improving health outcomes for AYA cancer patients.