"Absolutely No One Else, Other Than Yourself": Experiences of Adolescents and Young Adults with Cancer During the COVID-19 Pandemic.

Abstract

Introduction: The COVID-19 pandemic caused widespread disruption to the provision of health care in the United Kingdom. It posed two risks to AYACs: disruption of care and long-term adverse consequences compounding late effects. This study sought to better understand the experiences of AYACs receiving care during the pandemic and identify areas where greater support is needed. Methods: In-depth semistructured interviews with AYACs (n = 6), 16-22 years at diagnosis. Interviews were transcribed verbatim and analyzed using the principles of Giorgi's phenomenological analysis. Results: Four major themes and an interconnected theme were identified. Changes to health care meant AYACs were isolated and loss of in-person follow-up caused anxiety (theme 1). AYACs had to adapt to life with COVID-19 restrictions (theme 2). Support during the pandemic came from a variety of sources (theme 3). AYACs reported poor mental health due to a fear of relapse and contracting COVID-19 (theme 4). An additional burden for AYACs was the loss of the third person (e.g., parent) in consultations (interconnected theme). Conclusion: This study has wider implications for delivery of AYAC care, despite being set during the COVID-19 pandemic. The mental health implications will impact long-term care of these patients, and health care professionals must be aware of these to meet AYACs' holistic care needs.