Adolescent and Young Adult Cancer Survivors' Experiences of the Healthcare System: A Qualitative Study

Purpose: To qualitatively examine the experiences of diagnosis and treatment, and attitudes toward ongoing healthcare of adolescent and young adult (AYA) survivors of AYA cancer, to determine barriers to healthcare engagement in the early survivorship period. Methods: Forty-two participants aged between 15 and 25 years were recruited between February 2013 and October 2015 as part of a larger Australia-wide study. This study analyzed data collected through a semistructured telephone interview. Interviews were recorded and transcribed verbatim and then coded line-by-line. Data were analyzed for emergent themes using the qualitative software NVivo. Results: Many participants demonstrated a good understanding of their cancer diagnosis and treatment. Participants expressed high levels of confidence in their healthcare teams and demonstrated a conscientious approach to their ongoing cancer-specific and general healthcare. However, most AYAs had expectations of the cancer journey that differed from the realities of their experiences. Conclusions: The results further highlight the crucial role of healthcare professionals in ensuring AYA cancer patients have accurate expectations of diagnosis and treatment, and develop a strong working knowledge of their disease that is maintained into survivorship. AYA cancer survivors may require ongoing education and support to stay engaged with long-term follow-up care.