COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions.
Adolescent
Adult
Age Factors
COVID-19
/ epidemiology
Child
Child, Preschool
Communicable Disease Control
/ standards
Decision Making, Shared
Fear
Female
Health Services Accessibility
Humans
Infant
Infant, Newborn
Male
Middle Aged
Pandemics
/ prevention & control
Parents
/ psychology
Renal Insufficiency, Chronic
/ therapy
SARS-CoV-2
/ pathogenicity
Stress, Psychological
/ diagnosis
Surveys and Questionnaires
/ statistics & numerical data
United Kingdom
/ epidemiology
Young Adult
Age
COVID-19
Paediatrics
Quality of life
Journal
Pediatric nephrology (Berlin, Germany)
ISSN: 1432-198X
Titre abrégé: Pediatr Nephrol
Pays: Germany
ID NLM: 8708728
Informations de publication
Date de publication:
09 2021
09 2021
Historique:
received:
10
01
2021
accepted:
02
03
2021
revised:
19
02
2021
pubmed:
21
3
2021
medline:
25
8
2021
entrez:
20
3
2021
Statut:
ppublish
Résumé
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. 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. 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. This survey demonstrates substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making.
Sections du résumé
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.
Identifiants
pubmed: 33742247
doi: 10.1007/s00467-021-05041-8
pii: 10.1007/s00467-021-05041-8
pmc: PMC7979448
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
2797-2810Commentaires et corrections
Type : CommentIn
Informations de copyright
© 2021. Crown.
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