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COVID‐19 and children with cancer: parents’ experiences, anxieties and support needs

COVID‐19 and children with cancer: parents’ experiences, anxieties and support needs
COVID‐19 and children with cancer: parents’ experiences, anxieties and support needs

Background: Children with cancer were designated as clinically extremely vulnerable if they were to contract SARS-CoV-2 due to immune suppression in the early phase of the COVID-19 pandemic. Our aim was to explore experiences, information and support needs, and decision making of parents with a child with cancer in response to this phase in the United Kingdom. Methods: Parents of a child with cancer completed a survey at a time when the UK moved into a period of ‘lockdown’. An online survey was developed by the research team to capture parents’ experiences, information and support needs, and decision making, using closed statements and open text boxes. Descriptive quantitative analyses and qualitative thematic content analysis were undertaken. Findings: One hundred seventy-one parents/caregivers completed the survey. Eighty-five percent were worried about the virus and they were vigilant about the virus (92%) or cancer symptoms (93.4%). For two-thirds (69.6%), hospital was no longer considered a safe place. Eight overarching themes were identified related to the virus: (a) risk of infection; (b) information, guidance and advice; (c) health care provision; (d) fears and anxieties; or related to lockdown/isolation: (e) psychological and social impact; (f) keeping safe under lockdown; (g) provisions and dependence; and (h) employment and income. Conclusions: This is the first study, to the best of our knowledge, to report experiences of parents of a child with cancer during the SARS-CoV-2/COVID-19 pandemic. The majority of parents were worried about SARS-CoV-2 and transmitting the virus to their child. Hospital was no longer perceived to be a safe place, and parents were worried about suboptimal cancer care. Parents described fear and anxiety and the psychological, social and economic impact of isolation.

COVID-19, cancer, child, mental health, parents, well-being, worries
1545-5009
Darlington, Anne‐Sophie E.
472fcfc9-160b-4344-8113-8dd8760ff962
Morgan, Jessica E.
fd757603-6764-4cfa-9e89-be4dae2e3657
Wagland, Richard
16a44dcc-29cd-4797-9af2-41ef87f64d08
Sodergren, Samantha C.
d66fc3fa-2c98-403d-8ae5-410ef95de46e
Culliford, David
25511573-74d3-422a-b0ee-dfe60f80df87
Gamble, Ashley
76120cfc-2d5c-475d-9d47-1db0e3fc1a44
Phillips, Bob
11d4e5d1-e11f-4e9c-a9f2-8107e0f3e59d
Darlington, Anne‐Sophie E.
472fcfc9-160b-4344-8113-8dd8760ff962
Morgan, Jessica E.
fd757603-6764-4cfa-9e89-be4dae2e3657
Wagland, Richard
16a44dcc-29cd-4797-9af2-41ef87f64d08
Sodergren, Samantha C.
d66fc3fa-2c98-403d-8ae5-410ef95de46e
Culliford, David
25511573-74d3-422a-b0ee-dfe60f80df87
Gamble, Ashley
76120cfc-2d5c-475d-9d47-1db0e3fc1a44
Phillips, Bob
11d4e5d1-e11f-4e9c-a9f2-8107e0f3e59d

Darlington, Anne‐Sophie E., Morgan, Jessica E., Wagland, Richard, Sodergren, Samantha C., Culliford, David, Gamble, Ashley and Phillips, Bob (2021) COVID‐19 and children with cancer: parents’ experiences, anxieties and support needs. Pediatric Blood and Cancer, 68 (2), [e28790]. (doi:10.1002/pbc.28790).

Record type: Article

Abstract

Background: Children with cancer were designated as clinically extremely vulnerable if they were to contract SARS-CoV-2 due to immune suppression in the early phase of the COVID-19 pandemic. Our aim was to explore experiences, information and support needs, and decision making of parents with a child with cancer in response to this phase in the United Kingdom. Methods: Parents of a child with cancer completed a survey at a time when the UK moved into a period of ‘lockdown’. An online survey was developed by the research team to capture parents’ experiences, information and support needs, and decision making, using closed statements and open text boxes. Descriptive quantitative analyses and qualitative thematic content analysis were undertaken. Findings: One hundred seventy-one parents/caregivers completed the survey. Eighty-five percent were worried about the virus and they were vigilant about the virus (92%) or cancer symptoms (93.4%). For two-thirds (69.6%), hospital was no longer considered a safe place. Eight overarching themes were identified related to the virus: (a) risk of infection; (b) information, guidance and advice; (c) health care provision; (d) fears and anxieties; or related to lockdown/isolation: (e) psychological and social impact; (f) keeping safe under lockdown; (g) provisions and dependence; and (h) employment and income. Conclusions: This is the first study, to the best of our knowledge, to report experiences of parents of a child with cancer during the SARS-CoV-2/COVID-19 pandemic. The majority of parents were worried about SARS-CoV-2 and transmitting the virus to their child. Hospital was no longer perceived to be a safe place, and parents were worried about suboptimal cancer care. Parents described fear and anxiety and the psychological, social and economic impact of isolation.

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More information

Accepted/In Press date: 12 October 2020
e-pub ahead of print date: 21 November 2020
Published date: 1 February 2021
Keywords: COVID-19, cancer, child, mental health, parents, well-being, worries

Identifiers

Local EPrints ID: 449119
URI: http://eprints.soton.ac.uk/id/eprint/449119
ISSN: 1545-5009
PURE UUID: 570ba410-04b2-429d-a8a0-fc627aee153a
ORCID for Richard Wagland: ORCID iD orcid.org/0000-0003-1825-7587
ORCID for Samantha C. Sodergren: ORCID iD orcid.org/0000-0001-8755-146X
ORCID for David Culliford: ORCID iD orcid.org/0000-0003-1663-0253

Catalogue record

Date deposited: 17 May 2021 16:34
Last modified: 18 May 2021 01:46

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Contributors

Author: Jessica E. Morgan
Author: Richard Wagland ORCID iD
Author: David Culliford ORCID iD
Author: Ashley Gamble
Author: Bob Phillips

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