This is the first study to report experiences of parents of a child with cancer during the SARS-CoV-2/COVID-19 pandemic in the UK. The study has found that the majority of parents were worried about SARS-CoV-2, worried about their own health if they are infected, and worried about transmitting the virus to their child. They described vigilance about SARS-CoV-2 symptoms and cancer-related symptoms, and for a lot of parents the hospital was no longer a safe place during the first month of the lockdown. The qualitative findings show that the threat of SARS-CoV-2 leads to concerns about getting infected and therefore to fear of the hospital and healthcare teams visiting the family at home. Parents got information from their medical team, and almost all parents looked at social media for information, which for some led to feeling anxious. Parents wanted clear information and guidance, which included the shielding policy in the UK. Changes in healthcare provision led some parents to think their care will be suboptimal, and that care for COVID-19 patients was prioritised over that of cancer patients, and that the health service was strained. Parents were anxious about the unknown, about who will look after their child if they get ill (or die). Remarkably, only around one quarter of parents expressed a wish for additional support, and some described how their experience with cancer treatment had made them better prepared for ‘lockdown’ than those without this background.

The lockdown and imposed isolation by the UK government has led to psychological impact in terms of children missing out, feeling bored, missing family and friends, and a delay in social and emotional development, mirroring evidence from studies focusing on young people’s mental health during the pandemic.^23–25 Parents miss their support network, even though technology is available to connect with others. The designation of children as requiring ‘shielding’ provided particular challenges; the English Government advice described attempting to maintain complete isolation from all other people, even those living in the same household. This lack of age-related nuance may have increased the level of anxiety for some families, particularly around food shopping. Parents struggled with going out to grocery stores, as they did not want to expose themselves to the risk of getting the virus (and thus increasing the chances of the child becoming infected). In common with many people during the lockdown, parents are worried about employment and money; the study group of parents have the additional concern of transmitting the virus to their child.

Uncertainty and lack of clarity in communication were strong themes in the parents’ responses. A clearer, more open, and reasoned account of the various measures being planned and implemented may have assisted with reducing this distress. Much of the uncertainty arose from the true lack of knowledge about the effect of SARS-CoV-2, but few participants reflected this. The all-age signalling of government guidance failed to help families and placed them in an invidious position – to apparently defy the government guideline and risk adversely affecting their child through infection, or follow the guidelines strictly and adversely affect their child with restriction on activity and contact with one parent or siblings.²⁶

Reduced attendances in paediatric emergency care facilities with any form of injury or illness were reported.¹³ This, combined with data emerging from this survey on concern about the safety of hospitals, led the charities involved in the research along with local health providers and national paediatric bodies to promote the message of hospitals being ‘safe to attend’. Worries about the possible reduction in anti-cancer therapy were addressed with information co-produced by parents and medical professionals and disseminated through the same routes, explaining the process of contingency planning and the routes to these planned recommendations. The most marked change in care provision was the move to more remote/virtual follow-up appointments, and delay or omission of planned surveillance imaging for patients off treatment. These elements have rarely been shown to have significant survival advantage but contain great emotional weight.²⁷

Limitations of the study relate to the bias in the sample - although strenuous efforts were made to widely circulate the survey across children’s cancer interested social media, the respondents may not be representative of the whole population. The responses were mostly from mothers (86%), and the largest group of patients had ALL (46%). While this is disproportionate compared to the diagnoses made in the UK (where it accounts for around one quarter of malignancies), it is also treated for 2-3 years, in comparison with the shorter time frame (under 9 months) of most treatment trajectories. The high proportion of mothers responding is in keeping with surveys about children, as well as the observation mothers being the primary caregiver for the vast majority of children. In addition, parents responding to the survey could have self-selected to represent those parents who were most concerned. Finally, subgroup analyses findings may be based on chance given the number of analyses carried out (n=23×3) and the number of group differences (n=3)

We believe this study demonstrates how the views and experiences of a classically ‘vulnerable’ population can be captured by using existing research networks, and agile governance response and inclusion of patient partners from the commencement of the study. We have found high levels of concern about the consequences of SARS-CoV-2 infection in children with cancer and the consequences of presumed preventative interventions to the children and their families. We propose true uncertainty, coarse recommendations, and a lack of clarity behind decision-making process in national administrations may have worsened these experiences. As the pandemic continues, survey studies such as this will be important in understanding the ongoing experience of families and tuning support and information to their changing needs.