Experiences and support needs of parents/caregivers of children with cancer through the COVID-19 pandemic in the UK: a longitudinal study

Objective: to explore the experiences, information and support needs of parents/caregivers of children with cancer and how these changed as the COVID-19 pandemic evolved.Design: online surveys containing closed and free-text questions on experiences, information and support needs were completed at four time points (between April 2020 and October 2021) during the COVID-19 pandemic. Descriptive statistics of closed items and content analysis of qualitative data were conducted.Setting: online.Participants: parents/caregivers of children with cancer.Results: 335 parents/caregivers completed the survey over four time points. Findings revealed that parents’/caregivers’ worry about the virus and vigilance about their child’s virus symptoms decreased over time. Parents reporting the need for support on how to reduce their worries and/or family members during the virus outbreak were low, however parents reported a slight increase in need for support at T3 when schools reopened. Qualitative findings reported the following themes: (1) Psychological well-being of parents/caregivers, (2) Changing perceptions of risks/priorities, (3) Adjusting to COVID-19: Living with continued caution, (4) Healthcare and treatment provision, (5) Information seeking and needs during COVID-19.Conclusions: the COVID-19 pandemic disrupted people’s lives and routines in relation to access to support, finances, education and social lives, leading to psychological distress. Parents highlighted the need for timely, up-to-date and personalised information in relation to COVID-19 and their child with cancer. Further consideration of the development of technology-based health solutions may provide an efficient and safe way to connect with and support parent/caregivers