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

Luise Marino, Richard Wagland, Tara Bharucha, David Culliford, Sam Sodergren, Anne-Sophie Darlington

Research output: Contribution to journalArticlepeer-review

22 Downloads (Pure)

Abstract

Purpose of the study
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.
Study design
On-line survey design
Setting
An on-line survey with open/closed questions to explore the experiences of parents of children, as well as children and young people (CYP) with CHD during the COVID-19 crisis
Patients
Parents of children with CHD and CYP
Results
184 parents and 36 CYP completed the survey. Parents worry about the virus (86.4%) vs. CYP (69.4%), whilst (89%) parents are vigilant for symptoms of the virus vs. CYP(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
Parents and CYP were worried about the virus, although CYP less so. Parents and children 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 CYP concerns for their health during this pandemic.
Original languageEnglish
Pages (from-to)500-507
Number of pages8
JournalWorld journal for pediatric & congenital heart surgery
Volume12
Issue number4
DOIs
Publication statusPublished - 19 Jul 2021

Keywords

  • Congenital heart disease
  • Children and young people
  • COVID-19
  • parent experience
  • virus
  • isolation

Cite this