Coping With COVID‐19: Perspectives of Caregivers of Children and Young People With Chronic Kidney Disease

Abstract

BackgroundCaregivers of children and young people with chronic kidney disease (CKD) face challenging circumstances on a daily basis; however, the difficulties they experienced during the COVID‐19 pandemic, as well as potentially positive experiences, are not yet fully understood. The aim of this study was to explore the pandemic‐related experiences of these caregivers.MethodsTwelve caregivers were recruited from a hospital‐based pediatric renal program; eight families were posttransplant. Caregivers participated in virtual semistructured interviews conducted between March 2021 and November 2022. They provided responses to open‐ended questions concerning how the pandemic affected their child with CKD, their family, and themselves. Interviews were transcribed and coded using thematic analysis.ResultsFour main themes were identified: (1) Family Life, which included disruptions in routine, reduced social supports, and changes in the quality of family relationships; (2) Mental Health and Coping, which included increased anxiety and positive coping strategies; (3) Work and School Life, which included changes to work and school; and (4) Health and Health Care Systems, which included virtual health care and public health restrictions.ConclusionsDespite facing profound challenges, caregivers identified both positive and negative aspects of their pandemic experiences. Their coping strategies highlighted individual and family resilience characteristics. Implications for health care providers, including future pandemic planning, support for the transition from in‐person to virtual care, and strategies to better address barriers to resources for families of children with chronic kidney disease were discussed.