COVID-19 and children with cancer: Parents' experiences, anxieties, and support needs

Background Children with cancer were considered to be extremely clinically vulnerable to severe COVID-19 disease if they were to contract SARS-CoV-2 due to immune suppression as a result of anti-cancer treatment. The aim was to explore experiences, information and support needs, and decision-making of parents with a child with cancer in response to the early phase of the COVID-19 pandemic in the UK. Methods Parents of a child with cancer completed a survey in April 2020, as the UK moved into a period of "lockdown", with restrictions of movement outside of the home. An online survey was developed to capture parents9 experiences, information and support needs, and decision-making, using closed statements and open text boxes. Descriptive quantitative analyses and qualitative thematic content analysis were undertaken. Findings 171 parents/caregivers completed the survey. 85% of parents worried about the virus and the majority of parents were vigilant about virus (92%) or cancer symptoms (93.4%). For two-thirds (69.6%) hospital was no longer considered a safe place. Parents worried about their own health (81.1%) and about the child getting the virus from them (89.1%). Eight overarching themes, related to the virus: 1) risk of infection, 2) information, guidance and advice, 3) health care provision, 4) fears and anxieties; or related to lockdown/isolation: 5) psychological and social impact, 6) keeping safe under lockdown, 7) provisions and dependence, and 8) employment and income. Interpretation This is the first study to report experiences of parents of a child with cancer during the SARS-CoV-2/COVID-19 pandemic. The study demonstrated that the majority of parents are worried about SARS-CoV-2, and worried about transmitting the virus to their child. Hospital was no longer a safe place, and parents were worried about suboptimal cancer care. Parents describe fear and anxiety and the psychological, social and economic impact of isolation as a family.