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COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions

COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions
COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions
Background: during the initial COVID-19 pandemic, young United Kingdom (UK) kidney patients underwent lockdown and those with increased vulnerabilities socially isolated or ‘shielded’ at home. The experiences, information needs, decision-making and support needs of children and young adult (CYA) patients or their parents during this period is not well known. Method: UK wide online survey co-produced with patients was conducted in May 2020 among CYA aged 12-30, or parents of children aged <18 years with any long term kidney condition. Participants answered qualitative open text alongside quantitative closed questions. Thematic content analysis using a three-stage coding process was conducted. Results: 118 CYA (median age 21) and 197 parents of children (median age 10) responded. Predominant concerns from CYA were heightened vigilance about viral (68%) and kidney symptoms (77%) and detrimental impact on education or work opportunities (70%). Parents feared the virus more than CYA (71% vs 40%), that their child would catch the virus from them (64%) and adverse impact on other children at home (65%). CYA thematic analysis revealed: strong belief of becoming seriously ill if they contract COVID-19, lost educational opportunities, socialisation, and career development, and frustration at public for not following social distancing rules. Positive outcomes included improved family relationships and community cohesion. Only a minority (14-21% CYA and 20 -31% parents, merged questions) desired more support. Subgroup analysis identified greater negative psychological impact in the shielded group. Conclusions: this survey demonstrates substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making
0931-041X
Tse, Y
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Darlington, Anne-Sophie
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Tyerman, K
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Wallace, D.
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Pankhurst, T
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Chantziara, S
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Culliford, David
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Recio-Saucedo, A
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Nagra, A.
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Tse, Y
ab0dde8b-e571-49d1-96d2-d4f5a4993295
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Tyerman, K
32ff621b-e32f-446f-a6d1-b17399514399
Wallace, D.
ba9a6075-3385-4541-adaf-4190f7dfb0d1
Pankhurst, T
6ecdc4f8-897b-43ac-8bc0-6bbbeca7bcb6
Chantziara, S
420e5c31-cc3e-45f2-961b-e842d4953173
Culliford, David
25511573-74d3-422a-b0ee-dfe60f80df87
Recio-Saucedo, A
f8000ef2-0253-4ae6-9c92-40fdfd4b5ba1
Nagra, A.
08ed503a-67d6-43b5-b4cb-1ead580e4245

Tse, Y, Darlington, Anne-Sophie, Tyerman, K, Wallace, D., Pankhurst, T, Chantziara, S, Culliford, David, Recio-Saucedo, A and Nagra, A. (2021) COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions. Pediatric Nephrology. (In Press)

Record type: Article

Abstract

Background: during the initial COVID-19 pandemic, young United Kingdom (UK) kidney patients underwent lockdown and those with increased vulnerabilities socially isolated or ‘shielded’ at home. The experiences, information needs, decision-making and support needs of children and young adult (CYA) patients or their parents during this period is not well known. Method: UK wide online survey co-produced with patients was conducted in May 2020 among CYA aged 12-30, or parents of children aged <18 years with any long term kidney condition. Participants answered qualitative open text alongside quantitative closed questions. Thematic content analysis using a three-stage coding process was conducted. Results: 118 CYA (median age 21) and 197 parents of children (median age 10) responded. Predominant concerns from CYA were heightened vigilance about viral (68%) and kidney symptoms (77%) and detrimental impact on education or work opportunities (70%). Parents feared the virus more than CYA (71% vs 40%), that their child would catch the virus from them (64%) and adverse impact on other children at home (65%). CYA thematic analysis revealed: strong belief of becoming seriously ill if they contract COVID-19, lost educational opportunities, socialisation, and career development, and frustration at public for not following social distancing rules. Positive outcomes included improved family relationships and community cohesion. Only a minority (14-21% CYA and 20 -31% parents, merged questions) desired more support. Subgroup analysis identified greater negative psychological impact in the shielded group. Conclusions: this survey demonstrates substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making

Text
Renal-Share study 19Feb21 PedNeph_v3_main - Accepted Manuscript
Restricted to Repository staff only until 24 February 2022.
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More information

Accepted/In Press date: 24 February 2021

Identifiers

Local EPrints ID: 447487
URI: http://eprints.soton.ac.uk/id/eprint/447487
ISSN: 0931-041X
PURE UUID: 0d56ffd8-8da4-4de1-b431-4f95660155f8
ORCID for David Culliford: ORCID iD orcid.org/0000-0003-1663-0253

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Date deposited: 12 Mar 2021 17:32
Last modified: 13 Mar 2021 02:39

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Contributors

Author: Y Tse
Author: K Tyerman
Author: D. Wallace
Author: T Pankhurst
Author: S Chantziara
Author: David Culliford ORCID iD
Author: A Recio-Saucedo
Author: A. Nagra

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