Experiences of cancer care during COVID-19: Phase 1 results of a longitudinal qualitative study

BACKGROUND: Healthcare services have responded to the challenges of service delivery during COVID-19 with telehealth and hybrid models of care. However, there is limited understanding of the experiences of care amongst people affected by cancer and how their experiences may change and evolve against the shifting landscape of COVID-19 incidence, mortality, vaccination and refinements in service delivery. OBJECTIVES: This study explores the experiences of cancer care amongst people affected by cancer in Ireland during the COVID-19 pandemic. This paper presents the results of the initial cross-sectional semi-structured interviews and the longitudinal qualitative research design which will be employed in this study. DESIGN: A longitudinal descriptive qualitative study. SETTING: Ireland PARTICIPANTS: People living with and after cancer or caring for someone with cancer during the COVID-19 pandemic. METHODS: Participants were recruited to the study via social media advertisements and consented to participate in up to three semi-structured interviews between January and July 2021. Initial semi-structured interviews were conducted with 16 participants in January 2021. Participants completed measures of resilience (2-item Connor‐Davidson Resilience Scale) and distress (The National Comprehensive Cancer Network Distress Thermometer). Interviews were recorded, transcribed and analysed thematically. RESULTS: Participants reported low levels of distress and moderate to high levels of resilience on average. Three themes were generated from analysis of the first phase of cross-sectional interviews. Participants described a counterbalance of being cautious of infection and keeping safe through prevention and shielding strategies. Although hospitals felt safe and were working efficiently, some participants felt COVID-19 had compromised person-centredness and empathy in care. While participants valued the measures taken to minimize infection risk, substitution of face-to-face appointments with telehealth services and attending essential face-to-face appointments alone restricted participants' access to professional and social support. Despite this, many participants felt public health measures to reduce transmission of COVID-19 had created a sense of not missing out, feeling safe and reduced difficult social interactions requiring explanation of their diagnosis. CONCLUSIONS: There is an opportunity to learn from the experiences of healthcare delivery from the perspectives of people affected by cancer during the COVID-19 pandemic. The results highlight the complexities and dualities of living with, after or caring for someone with cancer during the COVID-19 pandemic. Opportunities for longitudinal qualitative research to explore the evolving experiences, concerns and persistent and emerging unmet information and clinical needs within the rapidly changing socio-political, socio-cultural and healthcare contexts of the COVID-19 pandemic are highlighted.