Experiences of parents who have children with chronic kidney disease: A systematic review of qualitative studies

OBJECTIVE. The objective of this study was to describe the experiences of parents who have children with chronic kidney disease. METHODS. We conducted a systematic review and meta-ethnography of studies that had used in-depth interviews or focus groups to explore experiences of parents with children who have chronic kidney disease (predialysis, hemodialysis, peritoneal dialysis, or after kidney transplantation). We searched 5 electronic databases (through to August 2005), Medline, Embase, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, and Sociofile/Sociological Abstract, and reference lists of relevant articles. RESULTS. Sixteen articles that reported the experiences of parents of 358 children with chronic kidney disease were included. Ten themes emerged, which we grouped into 3 interrelated clusters: intrapersonal (living with constant uncertainty, stress, and maintaining vigilance despite experiencing fatigue), interpersonal (medicalization of the parental role, dependence on and conflict with staff, and disrupted peer relationships), and external issues (management of the medical regimen, pursuit of information, organizing transportation, accommodation and finances, adhering to the child's liquid and diet restrictions, and balancing medical care with domestic responsibilities). CONCLUSIONS. In addition to normal parental roles, being a parent of a child with chronic kidney disease demands a high-level health care provider, problem solving, information seeking, and financial and practical skills at a time when the capacity to cope is threatened by physical tiredness, uncertainty, and disruption to peer support within and outside the family structure. Parents of children with chronic kidney disease need multidisciplinary care, which may lead to improved outcomes for their children.