The University of Southampton
University of Southampton Institutional Repository
Warning ePrints Soton is experiencing an issue with some file downloads not being available. We are working hard to fix this. Please bear with us.

COVID-19: impact, experiences and support needs of children and young adults with Cystic Fibrosis and parents

COVID-19: impact, experiences and support needs of children and young adults with Cystic Fibrosis and parents
COVID-19: impact, experiences and support needs of children and young adults with Cystic Fibrosis and parents

Background: Little is known about the impact of COVID-19 and the United Kingdom's (UK) national shielding advice on people with cystic fibrosis (CF) and their families. This study explored the experiences and support needs of children and young adults (CYAs) with CF, and parents who have a child with CF, during the COVID-19 pandemic. Methods: CYAs with CF and parents of CYAs with CF completed a UK wide online survey with open and closed questions exploring experiences, information and support needs and decision-making processes. Qualitative thematic content analysis and descriptive quantitative analyses were undertaken. Results: CYAs aged 10–30 years (n = 99) and parents of CYAs aged 0–34 years (n = 145) responded. Parents (72.7%) and CYAs (50.0%) worried about the virus, and both were vigilant for virus symptoms (82.7% and 79.7%). Over three-quarters of CYAs were worried about their own health if they caught the virus. CYAs worried about feeling more isolated during the virus (64.9%). Qualitative findings reported the following themes: (1) Disruption—caused by isolation, (2) impact on psychological wellbeing, (3) safety of shielding, and (4) healthcare and treatment provision—changes to care, access and support. Conclusions: The impact of COVID-19 and UK shielding advice to have no contact with anyone outside the household caused disruption to the lives and routines of individuals in relation to work, education, social lives, relationships, CF management routines and support. Parents and CYAs highlighted the need for clear, up-to-date and tailored advice on individualized risks and shielding.

COVID-19, cystic fibrosis, mental health, pandemic, well-being
8755-6863
2845-2853
Collaco, Nicole
d7a41227-8aa4-4bbb-a380-980824736945
Legg, Julian
8d6d78f4-3b30-4f4c-bcfa-9489a9fd386e
Day, Maria
1b36cb79-b535-42ae-8ba9-f7190ef21550
Culliford, David
25511573-74d3-422a-b0ee-dfe60f80df87
Campion, Anna
91854178-43f7-44d3-b056-6d11e473479b
West, Carolyn
3e1c6ef9-6d62-40c0-a421-e0772673b020
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Collaco, Nicole
d7a41227-8aa4-4bbb-a380-980824736945
Legg, Julian
8d6d78f4-3b30-4f4c-bcfa-9489a9fd386e
Day, Maria
1b36cb79-b535-42ae-8ba9-f7190ef21550
Culliford, David
25511573-74d3-422a-b0ee-dfe60f80df87
Campion, Anna
91854178-43f7-44d3-b056-6d11e473479b
West, Carolyn
3e1c6ef9-6d62-40c0-a421-e0772673b020
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962

Collaco, Nicole, Legg, Julian, Day, Maria, Culliford, David, Campion, Anna, West, Carolyn and Darlington, Anne-Sophie (2021) COVID-19: impact, experiences and support needs of children and young adults with Cystic Fibrosis and parents. Pediatric Pulmonology, 56 (9), 2845-2853. (doi:10.1002/ppul.25537).

Record type: Article

Abstract

Background: Little is known about the impact of COVID-19 and the United Kingdom's (UK) national shielding advice on people with cystic fibrosis (CF) and their families. This study explored the experiences and support needs of children and young adults (CYAs) with CF, and parents who have a child with CF, during the COVID-19 pandemic. Methods: CYAs with CF and parents of CYAs with CF completed a UK wide online survey with open and closed questions exploring experiences, information and support needs and decision-making processes. Qualitative thematic content analysis and descriptive quantitative analyses were undertaken. Results: CYAs aged 10–30 years (n = 99) and parents of CYAs aged 0–34 years (n = 145) responded. Parents (72.7%) and CYAs (50.0%) worried about the virus, and both were vigilant for virus symptoms (82.7% and 79.7%). Over three-quarters of CYAs were worried about their own health if they caught the virus. CYAs worried about feeling more isolated during the virus (64.9%). Qualitative findings reported the following themes: (1) Disruption—caused by isolation, (2) impact on psychological wellbeing, (3) safety of shielding, and (4) healthcare and treatment provision—changes to care, access and support. Conclusions: The impact of COVID-19 and UK shielding advice to have no contact with anyone outside the household caused disruption to the lives and routines of individuals in relation to work, education, social lives, relationships, CF management routines and support. Parents and CYAs highlighted the need for clear, up-to-date and tailored advice on individualized risks and shielding.

Text
R1cleanCOVID-19 Impact, experiences and support needs of children and young adults with Cystic Fibrosis and parents
Restricted to Repository staff only until 17 June 2022.
Request a copy

More information

Accepted/In Press date: 4 June 2021
e-pub ahead of print date: 17 June 2021
Additional Information: Funding Information: We would like to thank all parents and children/young adults who contributed their time and experiences to this study. To the Cystic Fibrosis Trust for sharing the information via social media and websites. We also would like to thank the Southampton Coronavirus Response Fund for funding this study. Publisher Copyright: © 2021 The Authors. Pediatric Pulmonology Published by Wiley Periodicals LLC. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
Keywords: COVID-19, cystic fibrosis, mental health, pandemic, well-being

Identifiers

Local EPrints ID: 449889
URI: http://eprints.soton.ac.uk/id/eprint/449889
ISSN: 8755-6863
PURE UUID: ee8a474a-e742-47b6-9ecc-fa51f8e27119
ORCID for Nicole Collaco: ORCID iD orcid.org/0000-0003-1398-9105
ORCID for David Culliford: ORCID iD orcid.org/0000-0003-1663-0253

Catalogue record

Date deposited: 23 Jun 2021 16:32
Last modified: 26 Nov 2021 03:18

Export record

Altmetrics

Contributors

Author: Nicole Collaco ORCID iD
Author: Julian Legg
Author: Maria Day
Author: David Culliford ORCID iD
Author: Anna Campion
Author: Carolyn West

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×