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. Objectives To understand the concerns and decision-making in CYA during the first lockdown, and perform subgroup analysis on shielded vs non-shielded patients 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 is the first study specifically surveying CYA with kidney conditions and their parents' experience of the COVID-19 pandemic during lockdown. We found substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making.
COVID-19: Experiences of lockdown and support needs in children and young adults with kidney conditions