Sources of Distress Experienced by Parents of Children with Chronic Kidney Disease on Dialysis: A Qualitative Systematic Review

Parents of children with chronic kidney disease face tremendous burdens of care, having to adopt dual roles as parents and informal healthcare providers, delivering home-based clinical care, despite lacking proper qualification and training. A systematic review of qualitative studies was conducted to identify sources of distress among parents caring for children with chronic kidney disease undergoing dialysis, excluding children who have had renal transplants. Guided by PRISMA guidelines, six electronic databases (PubMed, Embase, PsycINFO, Scopus, Cochrane, Google Scholar) were searched for relevant articles published in English. A three-step inductive thematic synthesis method outlined by Thomas and Harden (2018) was used to form descriptive themes and the Critical Appraisal Skill Program (CASP) qualitative checklist was utilised to appraise the quality of included articles. A total of 23,129 title and abstracts were reviewed; 161 full texts were reviewed. Thirteen papers, with the experiences of 183 parents, met the inclusion criteria. Most included studies were conducted in Western countries, which may limit the applicability of this review to other countries. Five themes emerged: disease-related distress, personal struggles, family structure, lack of resources and unrealistic social expectations. Parents of children with chronic kidney disease undergoing dialysis experienced distress at multiple levels. Healthcare professionals caring for children with chronic kidney disease could screen parents early for distress, and refer them to relevant psychosocial and community services. •Parents of children with chronic kidney disease face distress at multiple levels.•Sources include the disease, personal struggles, family, and societal stressors.•There are various actionable areas in the healthcare system to reduce parental distress.