“No Official Help Is Available”—Experience of Parents and Children With Congenital Heart Disease During COVID-19

  1. L. V. Marino
  2. R. Wagland
  3. D. J. Culliford
  4. T. Bharucha
  5. S. C. Sodergren
  6. Anne-Sophie E. Darlington

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Abstract

The purpose was to explore the experience, information and support needs, and decision-making of parents of children with congenital heart disease (CHD), as well as the children/young people themselves, during the COVID-19 crisis.

Materials and Methods:

A survey study of parents of children with CHD, children and young people, capturing experiences, decision-making, information, and support needs during the COVID-19 crisis was conducted. The survey launched for one month (April 9, 2020) during the first infection wave in the United Kingdom and subsequent restriction of free movement under lockdown rules from March 23, 2020, until May 31, 2020.

Results:

One hundred eighty-four parents and 36 children/young people completed the survey. Parents were more likely to worry about the virus (86.4%) than children/young people (69.4%), while (89%) parents were more vigilant for symptoms of the virus versus children/young people (69.4%). A thematic analysis of the qualitative comments covered 34 subthemes, forming eight overarching themes: Virus—(1) risk of infection; (2)information, guidance, and advice; (3) change in health care provision; and (4) fears and anxieties, and lockdown and isolation—(5) psychological and social impact, (6) keeping safe under lockdown, (7) provisions and dependence on others, and (8) employment and income.

Conclusions:

There was widespread concern over the virus especially among parents. Parents and children/young people, however, were frustrated with the lack of specific and pediatric-focused information and guidance, expressing disappointment with the adult-centric information available. Parents also felt alone, especially with their concerns around the implications of cardiac service suspension and the implication for their child’s health. In order to better support children and their families, resources need to be developed to address families’ and children/young people’s concerns for their health during this pandemic.

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  1. Version published to 10.1177/21501351211007102
  2. ScreenIT

    SciScore for 10.1101/2020.07.03.20146076: (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 NHS Health Research Authority Research Ethics Committees (Ethics Number IRAS nr. 282176) Study participants: Parents of children and CYP with CHD were recruited through social media, national charities web pages and Facebook groups to minimise the burden on the health system during the COVID-19 outbreak.
    Consent: Electronic consent was obtained through the online survey.
    Randomizationnot detected.
    Blindingnot detected.
    Power Analysisnot detected.
    Sex as a biological variablenot detected.

    Table 2: Resources

    Software and Algorithms
    SentencesResources
    Data analysis: Descriptive statistics were completed using IBM Statistical Package for Social Science (SPSS) (version 25, IBM, Armonk, NY, USA) summarising demographic data, and simple descriptive statistics of the closed statement.
    SPSS
    suggested: (SPSS, RRID:SCR_002865)

    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:
    The limitations of this work include the small sample size and potential exclusion of individuals with digital poverty, literacy and language issues. Although charities and support groups of children with CHD were targeted, some groups might have been overlooked thus imposing sample bias. The survey also represents a maternal view-point as the majority of respondents in the adult survey were women. Despite these limitations we believe the findings of this survey are important requiring a national conversation as to how parents and their children with CHD are better supported in the future, particularly if further periods of social distancing measures are required which result in closure of schools. Larcher et al(17) propose that article 12 of the United Nations Convention on the Rights of the Child(18) should be invoked requiring, ‘children to be informed and consulted over matters that concern them and that their views be given due weight in accordance with their age and maturity’ and is in keeping with the NHS ethos of ‘no decision about me, without me’. For the future, it is imperative we ensure better support and information for families to reduce the effects of social isolation, medical and educational deprivation.

    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 10.1101/2020.07.03.20146076v1 on medRxiv