ESPN 53rd Annual Meeting

ESPN 2021


 
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

1- GREAT NORTH CHILDRENS HOSPITAL, NEWCASTLE UPON TYNE, UK
2- UNIVERSITY OF SOUTHAMPTON, SCHOOL OF HEALTH SCIENCES, UK
3- LEEDS TEACHING HOSPITALS NHS TRUST, UK
4- MANCHESTER CHILDRENS HOSPITALS, UK
5- UNIVERSITY HOSPITALS BIRMINGHAM NHS FOUNDATION TRUST, UK
6- NIHR APPLIED RESEARCH COLLABORATION WESSEX, SCHOOL OF HEALTH SCIENCES, UNIVERSITY OF SOUTHAMPTON, UK
7- UNIVERSITY OF SOUTHAMPTON, FACULTY OF MEDICINE, UK
8- SOUTHAMPTON CHILDRENS HOSPITAL, UK
 
Introduction:

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.

Material and methods:

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 degree of chronic kidney disease. 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.