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

“No official help is available” - experience of parents and children with congenital heart disease during COVID-19
“No official help is available” - experience of parents and children with congenital heart disease during COVID-19
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.
Marino, Luise
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Wagland, Richard
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Culliford, David
25511573-74d3-422a-b0ee-dfe60f80df87
Bharucha, T
19c1659e-e403-4ac1-8cc5-023bd17ca526
Sodergren, Samantha
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Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Marino, Luise
c479400f-9424-4879-9ca6-d81e6351de26
Wagland, Richard
16a44dcc-29cd-4797-9af2-41ef87f64d08
Culliford, David
25511573-74d3-422a-b0ee-dfe60f80df87
Bharucha, T
19c1659e-e403-4ac1-8cc5-023bd17ca526
Sodergren, Samantha
d66fc3fa-2c98-403d-8ae5-410ef95de46e
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962

Marino, Luise, Wagland, Richard, Culliford, David, Bharucha, T, Sodergren, Samantha and Darlington, Anne-Sophie (2021) “No official help is available” - experience of parents and children with congenital heart disease during COVID-19. World Journal for Pediatric and Congenital Heart Surgery. (doi:10.1177/21501351211007102).

Record type: Article

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

Accepted/In Press date: 5 March 2021
Published date: 19 July 2021

Identifiers

Local EPrints ID: 447869
URI: http://eprints.soton.ac.uk/id/eprint/447869
PURE UUID: c9171dc3-abfb-4a65-ad96-a7f0c6654a34
ORCID for Richard Wagland: ORCID iD orcid.org/0000-0003-1825-7587
ORCID for David Culliford: ORCID iD orcid.org/0000-0003-1663-0253
ORCID for Samantha Sodergren: ORCID iD orcid.org/0000-0001-8755-146X

Catalogue record

Date deposited: 25 Mar 2021 18:07
Last modified: 24 Nov 2021 02:43

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Contributors

Author: Luise Marino
Author: Richard Wagland ORCID iD
Author: David Culliford ORCID iD
Author: T Bharucha

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