Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review

Abstract

IntroductionSiblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and psychological outcomes of the siblings. There is a need to synthesise existing evidence and enhance our understanding about programmes for siblings to acquire knowledge, develop skills and become empowered that can help them to provide support to their brother or sister with a neurodisability. The objective of this review is to identify and map the characteristics and outcomes of programmes designed to prepare siblings in their future roles to support their brother or sister with a neurodisability.Methods and analysisThis review will be conducted using the Joanna Briggs Institute methodology for scoping reviews. An integrated knowledge translation approach will be used by partnering with the Sibling Youth Advisory Council comprised of siblings of individuals with a disability throughout all review phases. Databases to be searched include PsycINFO, Cumulative Index of Nursing and Allied Health Literature, Sociological Abstracts, Education Resources Information Center, EMBASE, Web of Science, MEDLINE (Ovid) and SPORTDiscus, from date of inception to November 2020. Studies of programmes designed for siblings of individuals with neurodisabilities, with no exclusion on the age of siblings or context, and published in English will be included. Extracted data will include details of programme structure and content, eligibility criteria and participants, context, study methods and outcomes. A summary of the results will be presented in a tabular form to provide an overview of the programmes with an accompanying narrative summary to address the research questions of this review.DisseminationFindings from this review will be shared using dissemination strategies in partnership with the Sibling Youth Advisory Council. We will share the findings with key stakeholders such as healthcare providers, researchers, and patient and family advocacy groups.

Programs to Prepare Siblings for Future Roles to Support Their Brother or Sister with a Neurodevelopmental Disability: a Scoping Review

“…This scoping review was conducted according to the Joanna Briggs Institute (JBI) methodology for scoping reviews [ 16 ]. The protocol with details of the full search strategy for this review has been published [ 17 ]. This report of the scoping review results was written using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist [ 18 ].…”

“Filling in the gap”: A qualitative case study about identity construction of siblings of youth with a neurodisability

“…For example, there can be programs and resources available for the whole family to access. While there are some programs for families, there are currently limited programs that provide opportunities for the whole family to have conversations about their needs of each family member (Nguyen et al, 2022).…”

Being siblings of children with visual impairment

“…Siblings are an integral part of the family (Nguyen et al, 2021), and the family is the first and the most important relational space in which brothers and sisters meet, share their lives and build their personalities. When there is a child with a disability in the family, family life changes, as well as the whole family system, which functions as an emotional unit (Besier et al, 2010); when the child has a visual impairment (VI), family life can be very demanding, especially in Western societies, which are visual societies (Hutmacher, 2019) and where vision is usually regarded as the most important and essential sense.…”