Experiences and Needs of Families Caring for Children and Adolescents With Chronic Kidney Disease: A meta-Synthesis

Families struggle to care for children and adolescents with chronic kidney disease (CKD). They face extensive burden of care and altered family dynamics. A meta-synthesis review was conducted to explore the experiences and needs of families caring for children and adolescents with CKD using seven electronic databases (CINAHL, EMBASE, ProQuest Dissertations and Theses, PsycINFO, PubMed, Scopus, and Web of Science). The inclusion criteria are (1) qualitative English studies from January 2010 to December 2020 that (2) report personal experiences or needs of (3) family members caring for children and adolescents aged 19 years and below who have been diagnosed with CKD of any stage (4) across all settings. Quality appraisal was done using the Critical Appraisal Skill Program checklist. Data was synthesised using Sandelowski & Barroso's (2007) method. 2,236 records were identified and 13 eligible studies were included. Family members involved mothers (n = 190), fathers (n = 83), siblings (n = 5), and grandparents (n = 2). Three themes emerged: (1) demands of caregiving, (2) support systems, and (3) defining and making sense of new reality. Family caregivers experience overwhelming demands of caregiving and unmet support needs to cope. Appropriate interventions are needed to alleviate their burden. Knowledge of learning and support needs of families caring for children with CKD may shape nursing education and practice to cultivate more effective communication for better psychosocial family support. •Families of children with chronic kidney disease experience many challenges of care.•Acceptance of reality and positive thinking help families cope better with their care.•A combination of different support systems is preferred for families to cope.•Personalized, concrete and honest information presented to families are appreciated.•Families favor more compassion and psychosocial support from healthcare professionals.