Parenting a child with a kidney transplant—A study of everyday life experiences

Abstract

Background: Kidney transplantation in children shows excellent long-term outcomes. However, parents feel responsible for ensuring that their child adheres to complex medical interventions. The dual role – as both parent and medical caregiver – gives rise to fatigue, stress, and emotional pain. Parental and family functioning are critically important to a child's disease course, development and well-being. Objective: To explore the experiences and perspectives of mothers and fathers of children with a kidney transplant. Design: An explorative study using a qualitative method. Participants: Twelve parents (seven mothers and five fathers) of seven children with a kidney transplant. Approach: A qualitative exploratory study taking a phenomenological-hermeneutic approach. Method: Semi-structured individual interviews were conducted. The data were analysed using Ricoeur's theory of narrative and interpretation on three levels: naïve reading, structural analysis, and critical interpretation and discussion. Findings: Four themes were generated: Kidney transplantation as a turning point, the importance of a close collaboration with health care professionals, being the child's voice, and managing the dual role as a parent, and medical caregiver in everyday life. Conclusion: Child kidney transplantation led to a transformation in the child, on the physical, mental, and social levels; however, the child was still in need of special attention and support. Problems with the kidney graft functioning resulted in frustration and disappointment in parents. Teamwork between a child's parents became evident, in coping with the dual role as a parent and medical caregiver. Parents aimed to maintain a clear structure related to medication and disease-related treatment. A close and trustful relationship and collaboration with health care professionals were significant and included listening to the voice of the child.