"I had no idea what to expect": adolescent and young adults with cancer identify opportunities for patient-centered anticipatory guidance through narrative writing.

Abstract

Adolescents and young adults (AYAs) have unique experiences with cancer, yet little patient-centered anticipatory guidance exists specifically by AYAs and for AYAs. In the ChronCan study, we analyzed writing narratives generated by AYA participants undergoing cancer treatment to gain insights into how AYA perspectives can inform patient-centered care. Rapid qualitative analysis was used to organize and synthesize narrative content for efficient turnaround of data to guide future intervention implementation. Analysis generated two clinically relevant themes across AYA narratives: 1) AYAs identified specific aspects of the cancer journey that surprised or overwhelmed them, and 2) AYAs shared advice to help support and guide other AYA patients with newly diagnosed cancer. Both themes, interconnected by an awareness of "what I wish I had known," comprised 4 overlapping subthemes related to 1) duration and intensity of treatment, 2) mental and emotional toll of treatment, 3) pervasive social impact of illness, and 4) opportunities for self-discovery. Synthesis of these insights informed development of a patient-centered anticipatory guidance framework to leverage AYA patients' expertise and wisdom for the benefit of other AYAs with cancer.