Background and Aims: Although the impact of the COVID-19 pandemic has been widespread, youth diagnosed with cancer and their parents were particularly vulnerable given the already present medical and psychosocial burdens of childhood cancer. Despite this, little is known about the lived experiences of these families during the pandemic. We aimed to explore the family lived experience of the COVID-19 pandemic from the perspective of Canadian parents of youth on- and off-cancer treatment.

Methods: Canadian parents (English or French speaking) of youth on- or off- cancer treatment during the COVID-19 pandemic were recruited via social media and cancer advocacy groups. Parents participated in audio-recorded, semi-structured virtual interviews. Interviews were translated, transcribed, inductively coded, and analyzed using thematic analysis.

Results: Twenty parents participated (mean age = 42.8 years, range = 27-53, 90% female). Associated youth were most commonly diagnosed with leukemia (45%) or lymphoma (20%) (mean age = 10.5 years, range = 2-17, 70% female). Six distinct themes were identified: (1) normalization of families’ cancer-related precautionary health measures (e.g., masking) and public knowledge of disease transmission; (2) heightened concern around COVID-19 infection risk; (3) improved care access, including via virtual care; (4) fewer available healthcare resources; (5) limited social support due to visiting restrictions; and (6) a “leveled playing field” where perceived cancer-related constraints (e.g. virtual school) were shared across families impacted by cancer and in the general population.

Conclusions: These data highlight the complex experience of the COVID-19 pandemic among families impacted by childhood cancer. Canadian parents described concerns regarding contracting COVID-19, difficulties accessing care, and a lack of social support. Unintended positive experiences included greater awareness of disease transmission risks within the general population and opportunities to leverage virtual options for health care and education. New learning should be leveraged to inform the recovery phase of this pandemic, clinical practices in cancer and other chronic disease populations, and to improve readiness for other disasters/major incidents. Parents’ lived experiences of the COVID-19 pandemic can be used to help understand the care and wellbeing needs of youth and families impacted by cancer.