Experiences of people affected by cancer during the outbreak of the COVID-19 pandemic: an exploratory qualitative analysis of public online forums

PURPOSE: Studies focusing on patients with and survivors of cancer during the COVID-19 pandemic highlight unique psychological and behavioral challenges. These findings were obtained in surveys using self-report questionnaires with pre-specified response options that may not capture the broad range of experiences of individuals affected by cancer, including people with cancer and informal caregivers, in this unprecedented situation. Online forums produce a large amount of valuable first-hand user-generated content that can be used to better understand their day-to-day lives. This study, based on the analysis of narratives in cancer online forums, aims to describe and categorize the experiences of people affected by cancer during the outbreak of the COVID-19 pandemic. METHOD: An inductive, descriptive, thematic approach was applied to publicly available cancer forums from Germany, the USA, the UK, and Ireland posted between mid-March and mid-April 2020. RESULTS: An analysis of the content of 230 main posts revealed three major themes: (1) concerns related to the impact of COVID-19 on cancer care, the risks and fears of getting infected, logistic issues, and economic impact; (2) adaptation challenges faced at the individual and societal level; and (3) the need for advice including information about COVID-19 and the (self-)management of cancer symptoms and treatment. CONCLUSION: Our qualitative description of the experiences of people affected by cancer during the COVID-19 pandemic outbreak can help to improve communication, education, and the development of supportive care strategies. Furthermore, the themes and subthemes identified could potentially inform item development for future self-report questionnaires. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00520-021-06041-y.