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

Abstract

Aim and objectives To explore experiences and the significance of relationships and dynamics among family members living with a child with severe kidney disease. Background 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. Design A qualitative exploratory study taking a phenomenological–hermeneutic approach. Method 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). Results 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. Conclusion 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. Relevance to clinical practice 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.

Seeking tirelessly for better health and life conditions for the child with myelomeningocele

“…Some health professionals, more distant family members and friends provide significant support. The relationship with peers, that is, parents who have children in the same health condition, promotes a feeling of welcoming and belonging to society ( 38 ) .…”

“…Some health professionals, more distant family members and friends provide significant support. The relationship with peers, that is, parents who have children in the same health condition, promotes a feeling of welcoming and belonging to society (38) . Spirituality, support strategy and coping in the route of young people with a chronic disease and their families (39) , was praised by the participants, from the diagnosis to all the experienced stages.…”

Psychological aspects in children and parents of children with chronic kidney disease and their families

“…Moreover, studies of siblings with other chronic conditions revealed that siblings also experience various feelings and reactions, such as sadness, anxiety, stress, or guilt over their good health [ 18 , 19 ]. Some of the problems commonly associated with CKD are summarized in Table 1 [ 20 - 34 ].…”

Siblings of children with chronic kidney disease: A qualitative study of everyday life experiences

“…Nevertheless, children with CKD are exposed, and parents often experience difficulties in managing daily life in the family. Responsibilities-such as work, social life and caring for the other children-represent challenges that parents have to keep in balance, along with tending to the needs of their sick child (Agerskov et al, 2019(Agerskov et al, , 2020Cousino & Hazen, 2013;Cousino et al, 2017;Geense et al, 2017;Tong et al, 2010). Woodgate et al (2016) investigated how siblings experienced everyday life in a family with a child with complex care needs, as being a part of a group.…”

“…CKD in children impacts the everyday life of all family members (Agerskov et al, 2019(Agerskov et al, , 2020Cousino et al, 2017). In particular, healthy children may be affected by the fact that the sick child needs the parents' special attention and engagement.…”