Experts of their own experience: adolescent and young adult cancer patients’ advice-giving as a coping mechanism

Abstract

ABSTRACT Background To better understand informal coping strategies among adolescents and young adults (AYAs) with cancer, the current investigation asked AYA study participants to describe the ‘advice’ they would offer to hypothetical peers about coping following diagnosis. This study explores the utility of the single item ‘advice’ prompt for supportive oncology research and practice. Methods AYA cancer patients (n = 27) aged 12–25 years were recruited through electronic health record query at a single-institution health system. Participants completed semi-structured interviews. Inductive themes were described regarding advice about informal coping strategies following cancer diagnosis. The Institutional Review Board approved this study (HUM#00157267). Results Emergent advice themes included (1) attitude re/framing, (2) engage support network, and (3) self-advocacy. Participants advised cultivating a positive yet realistic attitude about the present and future. Reaching out to support network members and accepting help were advised, as was rebuffing unhelpful support. Participants also advocated for addressing medical information needs and building trusting relationships with clinicians. Conclusions Soliciting AYA advice serves to identify informal coping mechanisms in response to life-stage-specific concerns. Future research is called to substantiate the utility of ‘advice’ as a single item tool for research and clinical questionnaires. Practice implications call for creating opportunities for AYAs to impart their advice to others (e.g. anonymous community message board) as a means of personal catharsis, altruistic service, and legitimizing AYAs as ‘embodied’ experts of their own experiences.