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

BACKGROUND: Caregivers 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. METHODS: Twelve 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. RESULTS: Four 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. CONCLUSIONS: Despite 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.

A scoping review of the experiences and well-being of siblings of children with chronic kidney disease: implications for practice and research.

BACKGROUND: Children with chronic kidney disease (CKD) and their families deal with challenging circumstances. While numerous studies have shown that both patients and parents in these families can experience a variety of challenges and concerns, the experience of siblings is less well understood. The focus of this scoping review was on research addressing the experiences and well-being of siblings of children with CKD. METHODS: Following scoping review methodology, five databases were searched for peer-reviewed research or graduate theses published in English that addressed the experience or well-being of siblings aged 25 years or younger (biological, step or foster) of children with CKD; studies from any year or location were included. Two independent coders identified relevant studies. Findings were summarized and synthesized. RESULTS: Of the 2990 studies identified, 19 were chosen for full text review and eight fit the inclusion criteria. Five of the selected studies were qualitative, two were quantitative and one used mixed-methods. Four broad themes across studies were identified including family functioning, significant relationships, psychological well-being, and coping strategies. While there was some convergence between qualitative and quantitative findings, these linkages were weak. CONCLUSIONS: Several unmet needs of siblings were uncovered by this review. Sibling perceptions of differential parental treatment and desire for information about CKD emerged as priorities for practice. Using a strength-based approach in order to better understand sibling experiences and well-being was also recommended for future research. A higher resolution version of the Graphical abstract is available as Supplementary information.