Adolescents and young adults (AYAs) with cancer are encouraged or expected to be involved in treatment decision making (TDM). There is limited research on whether and how they want to be involved in TDM. Treatment outcomes in the AYA group have improved minimally compared to their older and younger peers. They experience treatment non-adherence rates as high as 60% that can lead to increased risk of relapse. Open communication, positive family relationships and involvement of the AYA in treatment decisions and illness management could support treatment adherence. However, there is insufficient research exploring the AYA’s involvement in TDM.

Focused Ethnography within the sociologic tradition informed by symbolic interactionism was used to explore and describe AYAs’ experiences with cancer TDM.

Semi-structured Interviews and informal participant observation were used. Thirty-one interviews were conducted with sixteen AYAs between the ages of 15 and 20 years. Participants were asked to reflect on a major recent treatment decision making experience (e.g., clinical trial or surgery) and other treatment decisions made since. Analysis included field notes, analytic memos and coding of interview transcripts. The research was conducted at two pediatric institutions.

Three dimensions related to AYAs’ involvement in cancer TDM were identified: 1) becoming experienced with cancer, 2) import of the decision and 3) decision making roles. AYAs’ preferences for participation in decision making may vary over time and by type of decision. Parents play a particularly important supportive role. Categories related to their new way of being were also identified and centered around not being able to do what they used to do, changing interpersonal relationships and living with uncertainty. Participants described spending more time with family who provided strength, support and advocacy. They described various strategies for dealing with cancer, and how they decided which activities to participate in, or avoid. Future research is needed to focus on developing and implementing interventions to assist AYAs to develop decision making skills and be involved in decisions about their care, as well and enable AYAs to feel less isolated and facilitate their adjustment to their new “cancer normal.”