Everyday life experiences in families with a child with kidney disease

Abstract

SUMMARY 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.

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

“…Living with an ill child impacted on all family members as they all were in need of support and attention including spouses and siblings. 50 The deprivation of support and attention caused frustration and powerlessness. 50 Parents experienced social isolation which commonly impacted on their health and wellbeing because of their caregiver role that occupied them full-time.…”

“…50 The deprivation of support and attention caused frustration and powerlessness. 50 Parents experienced social isolation which commonly impacted on their health and wellbeing because of their caregiver role that occupied them full-time. 38,51 Parents described experiencing imbalance between work and personal life, felt isolated from their work place or their community and found it difficult to spend time outside the home, feeling trapped inside.…”

“…The need of siblings was identified as being as important as the need of their ill child according parents in six articles. 34,35,39,50,60,61 All family members were affected when parents cared for a child with a life limiting condition, and parents felt a need for health professionals to understand that. 34 Hospitalisation and instability of the child's disease and condition could result in siblings feeling anxious and stressed.…”

“…34,35,39,50,60,61 Family members including the siblings, experienced less time and attention given to them, leaving them feeling overlooked. 34,35,39,50,60,61 Parents expressed it was important for health professionals to consider and take into account the family members of the ill child by involving them with support services such as counselling services. 34,35,39,50,60,61 Lack of respite care and out of hours support.…”

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

“…42 Siblings of children with CKD report anxiety around their siblings' medical needs and frustration with limitations in their own lives. 43 Parents of children with CKD have higher rates of depression and anxiety, poorer HRQoL and increased financial strain; and though these burdens evolve, they do not resolve with transplantation. [44][45][46][47][48][49][50] The challenges experienced by children with CKD and their families require intentional, thoughtful shared decision-making incorporating patient, parent, and clinician.…”