Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study

Background Children diagnosed with chronic kidney disease (CKD) depend on their parents for complex, continuous and intensive support. The study aimed to explore the experiences of parents who have children with CKD. Methods Parents of 20 children with CKD, recruited from two paediatric hospitals in Australia, participated in an in-depth interview, qualitative study. Results Four major themes were identified: (1) absorbing the clinical environment: parents struggled to accept the diagnosis and permanence of CKD, felt traumatized watching their child undergo invasive clinical procedures, battled to meet appointments, negotiated with staff for their child's needs and felt disempowered; (2) medicalizing parenting: parents became caregivers, a role which was stressful, exhausting and overwhelming. Dialysis was unrelenting and consumed the time, thoughts and energy of parents who felt at fault if their child developed infections and other complications. Parents struggled with their child's psychological problems and episodic aggressive behaviour; (3) disrupting family norms: CKD caused spousal tension, sibling neglect and influenced family planning; (4) coping strategies and support structures: Parents depended on support from their health care providers and valued meeting and learning from other parents of CKD children. Parents also expressed information needs and suggested methods of communicating information. Conclusions Despite facing profound and pervasive difficulties, parents strived to fulfil their dual parental and health care provider responsibilities. Parents appear to need better support structures to help them cope with the difficulties encountered during all stages of their child's illness.