The significance of relationships and dynamics in families with a child with end-stage kidney disease: A qualitative study.

Abstract

To explore experiences and the significance of relationships and dynamics among family members living with a child with severe kidney disease. Chronic kidney disease (CKD) in children is often incurable, leading to irreversible kidney damage. End-stage kidney failure in a child impacts daily life and routines, requiring significant social adaptation for all family members. However, little is known about how individual family members experience relationships, interactions and dynamics within the family. A qualitative exploratory study taking a phenomenological-hermeneutic approach. Data were collected through semi-structured individual interviews with seven fathers, seven mothers, five children with end-stage kidney disease and five siblings. The data were analysed using Ricoeur's theory of narrative and interpretation, on three levels: naïve reading; structural analysis; and critical interpretation and discussion. The Consolidated Criteria for Reporting Qualitative Research checklist has been used (see Supporting Information). All family members experienced relationships within and outside the family as a significant part of everyday life. The well-being of the sick child had an impact on the dynamics and emotional well-being of all family members. Siblings were in need of support; however, being fair could be challenging for parents. CKD in a child has an impact on family dynamics and on the relationships between family members. Family members are vulnerable and in need of practical help and emotional support from close relatives, friends, health professionals and other individuals around them. In clinical practice, the ability to reflect on, or interpret, a range of situations by initiating a dialogue is essential to shape both an individual perspective and the perspective of the entire family unit.