Everyday life experiences in families with a child with kidney disease

Background: Chronic kidney disease in children is a complex medical and psychosocial disease with factors that differ from the adult disease in significant ways. Among parents, there is uncertainty about disease progression and lack of confidence in caring for the child. The disease has an impact on the emotional and social well-being of the whole family. Objectives: To investigate everyday life experiences from the perspectives of members of a family that includes a child with end stage renal disease. Method: The study took a phenomenological-hermeneutical approach. Semi-structured individual interviews were conducted with seven fathers, seven mothers, five children with kidney disease and five siblings. The data were analysed using Ricoeur's theory of narrative and interpretation, on three levels: naïve reading, structural analysis, critical interpretation and discussion. Results: It was significant that everyday life and caring for the child were structured around parents’ energy reserves. The disease left its mark and changes to daily life caused anxiety, especially for siblings. The search for normalcy was significant and, although the families coped with conditions around the disease, it could be a challenge. Conclusion: Family members feel vulnerable and concerned and need attention, support and care. Limitations in everyday life cause a dilemma, and the well-being of one family member has an impact on the well-being of the family as a whole. Implications for practice: Health care professionals should focus on the impact of the family's experiences and needs, and the parents’ role in family relationships, to support the entire family unit.