Methods

Participants and sampling

We conducted semi-structured interviews in January and February, 2023 with individuals who were diagnosed with any type of cancer between the ages of 20 and 39 years (n = 30). Although adolescents and young adults have often been studied as one age group (typically defined as 15–39 years old), combining the full age range into one group can mask important heterogeneity and limit comparison to other studies. We limited our study to the young adult age range of 20–39 years, consistent with the cut-off used in previous young adult cancer studies [11, 49] and supported by findings from the Adolescent and Young Adult Oncology Progress Review Group [50] that document meaningful differences between adolescents and young adults within the broader AYA population.

This study, including all procedures and materials, was approved by the University at Buffalo Institutional Review Board. Participants were recruited via ResearchMatch (26.7%, n = 8), an online volunteer registry for health-related studies [51], and through recruitment posts in cancer-related social media groups (73.3%, n = 22). Potential participants completed a REDCap screening survey to determine their eligibility. Eligibility criteria included diagnosed with cancer between 20 and 39 years old, currently between 20 and 45 years old, resided in the United States both at the time of the study and at the time of diagnosis, and experienced abnormal physical changes/symptoms before cancer diagnosis. The current age upper limit was selected pragmatically to maximize recruitment of a population that can be difficult to engage in research, while ensuring that participants remained close enough to young adulthood that their reflections on pre-diagnosis experiences would be grounded in the developmental, psychological, and situational context characteristic of that life stage. We purposively sampled only young adults who recalled experiencing symptoms because those who were diagnosed through routine bloodwork or screenings would not have experienced the appraisal or help-seeking processes central to our study aims and the goal of informing communication interventions. Importantly, in the screening survey, we did not ask if the symptom was the reason they sought medical care, simply if, in hindsight, they recall experiencing physical body changes.

Procedure

The lead author (NCA) conducted semi-structured interviews with each participant. All participants provided informed consent. Each interview began with a broad question asking the participant to describe what happened in the time from the first physical change they noticed to the time they received a formal diagnosis. Follow-up questions asked about specific factors and processes impacting their appraisal of symptoms, decision to seek help for those symptoms, and healthcare encounters leading to diagnosis. Interviews lasted approximately 60 min and took place on Zoom. All interviews were video recorded and transcribed verbatim.

Data analysis

Three independent coders (NCA, CB, LK) used template analysis [52, 53] to code each interview transcript. NCA developed an initial a priori codebook based on the study aims, interview guide, and existing research, which was refined through preliminary coding of four transcripts. The three coders then applied the codebook to six transcripts, met to resolve discrepancies, and finalized the codebook. The final codebook was applied to all transcripts by two coders each (NCA coded all 30 transcripts; CB and LK coded 15 each).