COVID‐19 and children with cancer: Parents’ experiences, anxieties and support needs

  1. Anne‐Sophie E. Darlington
  2. Jessica E. Morgan
  3. Richard Wagland
  4. Samantha C. Sodergren
  5. David Culliford
  6. Ashley Gamble
  7. Bob Phillips

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Abstract

Background

Children with cancer were designated as clinically extremely vulnerable if they were to contract SARS‐CoV‐2 due to immune suppression in the early phase of the COVID‐19 pandemic. Our aim was to explore experiences, information and support needs, and decision making of parents with a child with cancer in response to this phase in the United Kingdom.

Methods

Parents of a child with cancer completed a survey at a time when the UK moved into a period of ‘lockdown’. An online survey was developed by the research team to capture parents’ 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

One hundred seventy‐one parents/caregivers completed the survey. Eighty‐five percent were worried about the virus and they were vigilant about the virus (92%) or cancer symptoms (93.4%). For two‐thirds (69.6%), hospital was no longer considered a safe place. Eight overarching themes were identified related to the virus: (a) risk of infection; (b) information, guidance and advice; (c) health care provision; (d) fears and anxieties; or related to lockdown/isolation: (e) psychological and social impact; (f) keeping safe under lockdown; (g) provisions and dependence; and (h) employment and income.

Conclusions

This is the first study, to the best of our knowledge, to report experiences of parents of a child with cancer during the SARS‐CoV‐2/COVID‐19 pandemic. The majority of parents were worried about SARS‐CoV‐2 and transmitting the virus to their child. Hospital was no longer perceived to be a safe place, and parents were worried about suboptimal cancer care. Parents described fear and anxiety and the psychological, social and economic impact of isolation.

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  1. Version published to 10.1002/pbc.28790
  2. ScreenIT

    SciScore for 10.1101/2020.06.11.20128603: (What is this?)

    Please note, not all rigor criteria are appropriate for all manuscripts.

    Table 1: Rigor

    Institutional Review Board StatementIRB: The study was approved by the University of Southampton and UK NHS Health Research Authority Research Ethics Committees (IRAS nr. 282176).
    Consent: Electronic consent was obtained before completing the online survey.
    Randomizationnot detected.
    Blindingnot detected.
    Power Analysisnot detected.
    Sex as a biological variablenot detected.

    Table 2: Resources

    No key resources detected.

    Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).

    Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:
    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...

    Results from TrialIdentifier: No clinical trial numbers were referenced.

    Results from Barzooka: We did not find any issues relating to the usage of bar graphs.

    Results from JetFighter: We did not find any issues relating to colormaps.

    Results from rtransparent:
    • Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
    • Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
    • No protocol registration statement was detected.

    About SciScore

    SciScore is an automated tool that is designed to assist expert reviewers by finding and presenting formulaic information scattered throughout a paper in a standard, easy to digest format. SciScore checks for the presence and correctness of RRIDs (research resource identifiers), and for rigor criteria such as sex and investigator blinding. For details on the theoretical underpinning of rigor criteria and the tools shown here, including references cited, please follow this link.

  3. Version published to 10.1101/2020.06.11.20128603v1 on medRxiv