Exploring the perspectives of current and future sibling caregivers to a person with a neurodevelopmental disorder – implications for occupational therapy. A scoping review.

Abstract: Introduction: Numerous studies have examined caregiver burden and stress, yet few represent the perspective from the sibling caregiver of a person with a neurodevelopmental disorder within the context of occupational therapy practice. Therefore, this scoping review provides a review of current evidence. Aim: The aim of the study is to review current literature to find sibling caregiver perspectives on their roles as caregivers to an individual with a neurodevelopmental disorder and whether their perspectives can influence improvements to the occupational therapy practice. Method: A scoping review methodology was chosen to map out the available literature and summarise the findings. The author conducted this review using guidance from the Joanna Briggs Institute. Results: The review resulted in 11 articles and reviewed the perspectives of 1181 sibling participants. The findings resulted in five main themes: (1) Need for education and training opportunities in relation to caregiving; (2) Policy and guideline changes in relation to sibling caregiver involvement; (3) Sibling caregiver inclusion into the care pathway; (4) Need for improvements in service coordination; and (5) Sibling caregivers' lack of knowledge in guardianship matters. Conclusions: Both positive experiences and negative challenges were reported from sibling experiences when accessing healthcare services. Ideas and strategies were discussed by sibling caregivers in how to improve services. Significance:  This review identified practical strategies which can be used in occupational therapy practice to support and improve services in relation to working with sibling caregivers.