A scoping review of the experiences and well-being of siblings of children with chronic kidney disease: implications for practice and research

Abstract

Background Children with chronic kidney disease (CKD) and their families deal with challenging circumstances. While numerous studies have shown that both patients and parents in these families can experience a variety of challenges and concerns, the experience of siblings is less well understood. The focus of this scoping review was on research addressing the experiences and well-being of siblings of children with CKD. Methods Following scoping review methodology, five databases were searched for peer-reviewed research or graduate theses published in English that addressed the experience or well-being of siblings aged 25 years or younger (biological, step or foster) of children with CKD; studies from any year or location were included. Two independent coders identified relevant studies. Findings were summarized and synthesized. Results Of the 2990 studies identified, 19 were chosen for full text review and eight fit the inclusion criteria. Five of the selected studies were qualitative, two were quantitative and one used mixed-methods. Four broad themes across studies were identified including family functioning, significant relationships, psychological well-being, and coping strategies. While there was some convergence between qualitative and quantitative findings, these linkages were weak. Conclusions Several unmet needs of siblings were uncovered by this review. Sibling perceptions of differential parental treatment and desire for information about CKD emerged as priorities for practice. Using a strength-based approach in order to better understand sibling experiences and well-being was also recommended for future research.

Life outcomes after paediatric kidney transplantation: a qualitative, biographical study in long-term survivors

“…While prior studies have highlighted the role of siblings in providing care and support29 31 our long-term analysis reveals a novel finding. Parents continue to seek sibling support even when it is no longer physically necessary, underscoring the enduring importance of siblings in promoting life participation, even after transplantation (Siblings, Topic 4).…”

“…Our study is the first attempt to examine experiences and perceptions of families with long-term survivors of paediatric ESKD (including dialysis and transplantation) as a model for CMC from a long-term, biographical perspective. 29 Unique, comprehensive information of each individual story, exploring the factors that impact survivors' bilateral influences on their families and vice versa, revealed the desire for normality and the importance of siblings in the needed coping strategies of patients and their families. 30 31 Our key finding is patients, caregivers and siblings' desire for normality in daily life, each with varying perceptions of normality.…”

The Other Sibling: Mental Health Effects on a Healthy Sibling of a Child With a Chronic Disease: A Systematic Review

“…Depression or traumatic stress symptoms suggested by previous studies included in their review were not found of high importance, but the authors recognize that the self-reporting method could be the cause of variability in the results. [33].…”

Sibling Relationship Dynamics in Families with a Child Diagnosed with a Chronic Mental Disorder versus a Somatic Condition

“…Studies on parent reports indicate negative aspects of their quality of life, because of their stress and the child’s diagnosis burden. Additionally, they indicate that the healthy siblings have a tendency to under report the difficulties they face in relation to their affected sibling, in order to formulate the answer they think is expected from them [ 31 , 32 , 33 ]. Another important limitation was that the order of birth of the child with a disability was not considered, as it is known that for a sibling relationship it is important whether a given child is the youngest or the oldest among siblings.…”