Impact of growing up with a sibling with a neurodevelopmental disorder on the quality of life of an unaffected sibling: a scoping review

Abstract

Purpose

Growing up with a sibling with a neurodevelopmental disorder can have positive and negative effects on personal, social and emotional well-being; however, little is known about the impacts on unaffected siblings’ quality of life. The purpose of this review was to synthesize evidence from studies evaluating the quality of life of unaffected siblings of children with neurodevelopmental disorders.

Method

A systematic search was conducted on four databases to identify studies reporting the quality of life of unaffected siblings of children with neurodevelopmental disorders.

Results

Seven studies met the inclusion criteria. Four studies reported impaired quality of life in unaffected siblings of children with neurodevelopmental disorder while three studies reported not the impaired quality of life. Parents reported the lower quality of life for children with or without neurodevelopmental disorders compared to children’s self-reports.

Conclusions

This review provides the mixed evidence on the quality of life in unaffected siblings of children with neurodevelopmental disorders, and identifies the substantial gap in the research regarding the impacts of children's neurodevelopmental disorders on the quality of life of their unaffected siblings. Assessment of unaffected siblings’ quality of life is necessary to identify those who may be at risk and to provide support programs for physical and emotional well-being. Future research examining the quality of life of unaffected siblings across a variety of NDD is needed.

Implications for rehabilitation

• Growing up with a sibling with a neurodevelopmental disorder influences the personal and social development of the unaffected child.

• Measuring quality of life can have a meaningful impact on the lives of unaffected siblings of children with neurodevelopmental disorders and their families. Evidence generated from such studies can be used by healthcare providers such as physicians, nurses, psychologists, and social workers to recommend appropriate supports to the family and siblings.

Keywords:

• Neurodevelopmental disorder
• Children
• Siblings
• Quality of life
• Health-related quality of life

Acknowledgements

The authors would like to thank Dr. Whitney Berta, Institute for Health Policy, Management & Evaluation, University of Toronto for providing comments and feedback on earlier version of manuscript.

Disclosure statement

The authors report no declaration of interest.

Additional information

Funding

Ramesh Lamsal was supported through the RestraComp Hospital for Sick Children Foundation Student Scholarship Program.