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. 2021 Sep;36(9):2797-2810.
doi: 10.1007/s00467-021-05041-8. Epub 2021 Mar 19.

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

Yincent Tse  1 , Anne-Sophie E Darlington  2 , Kay Tyerman  3 , Dean Wallace  4 , Tanya Pankhurst  5 , Sofia Chantziara  2 , David Culliford  6 , Alejandra Recio-Saucedo  7 , Arvind Nagra  8
Affiliations

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

Yincent Tse et al. Pediatr Nephrol. 2021 Sep.

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.

Keywords: Age; COVID-19; Paediatrics; Quality of life.

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Conflict of interest statement

The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Children and young adults aged 12–30 years with chronic kidney conditions. Amalgamated responses of those who answered ‘quite a bit’ or ‘very much’ to each question
Fig. 2
Fig. 2
Parents of children and young adults aged 12–30 years with chronic kidney conditions. Amalgamated responses of those who answered ‘quite a bit’ or ‘very much’ to each question
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