“No official help is available” - experience of parents and children with congenital heart disease during COVID-19

Abstract

Introduction: the purpose was to explore the experience, information, support needs and decision-making of parents with congenital heart disease (CHD) 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. The survey launched for 1 month (9thApril 2020) during the first infection wave in the UK and subsequent restriction of free movement under lockdown rules from March 23rd2020 until May 31st2020.

Results: 184 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%), whilst (89%) parents were more vigilant for symptoms of the virus vs. 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; Lockdown and isolation 5)psychological and social impact, 6)keeping safe under lockdown, 7)provisions and dependence on others, 8)employment and income.

Conclusions: there was widespread concern over the virus especially amongst parents. Parents and children/young people however, were frustrated with the lack of specific and paediatric 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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Identifiers

ORCID for Richard Wagland: orcid.org/0000-0003-1825-7587

ORCID for David Culliford: orcid.org/0000-0003-1663-0253

ORCID for Samantha Sodergren: orcid.org/0000-0001-8755-146X

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