COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions
File(s)s00467-021-05041-8.pdf (344.61 KB)
Published version
Author(s)
Type
Journal 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.
Methods
A UK-wide online survey co-produced with patients was conducted in May 2020 amongst 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
One-hundred and eighteen 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%), and had concerns that their child would catch the virus from them (64%) and would have an adverse impact on other children at home (65%). CYA thematic analysis revealed strong belief of becoming seriously ill if they contracted COVID-19; lost educational opportunities, socialisation and career development; and frustration with the 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.
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.
Methods
A UK-wide online survey co-produced with patients was conducted in May 2020 amongst 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
One-hundred and eighteen 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%), and had concerns that their child would catch the virus from them (64%) and would have an adverse impact on other children at home (65%). CYA thematic analysis revealed strong belief of becoming seriously ill if they contracted COVID-19; lost educational opportunities, socialisation and career development; and frustration with the 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.
Date Issued
2021-09
Date Acceptance
2021-03-02
Citation
Pediatric Nephrology, 2021, 36 (9), pp.2797-2810
ISSN
0931-041X
Publisher
Springer
Start Page
2797
End Page
2810
Journal / Book Title
Pediatric Nephrology
Volume
36
Issue
9
Copyright Statement
© Crown 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
License URL
Identifier
http://dx.doi.org/10.1007/s00467-021-05041-8
Publication Status
Published
Date Publish Online
2021-03-19