Experiences of siblings of children with profound intellectual and multiple disabilities: a qualitative systematic review protocol.

Abstract

Objective: The objective of this systematic review is to explore the experiences of siblings of children with profound intellectual and multiple disabilities.

Introduction: With improved life expectancy of children with profound intellectual and multiple disabilities, the research focus is on care at home and in the community. Although parents are the primary caregivers, siblings often assume the role of young caregivers, bearing the weight of caregiving responsibilities. Thus, a synthesis of qualitative findings is required regarding their experiences to facilitate the development of effective support strategies.

Inclusion criteria: Siblings of children with profound intellectual and multiple disabilities will be included, defined as children with an IQ of ≤40 or mental development below a 2-year-old's level, coupled with an inability to walk independently. Disabled children aged <20 years will be included. There will be no restrictions on the siblings' age or type of relationship. Qualitative studies on experiences, caregiving burdens, challenges, difficulties, and frustration in daily life will be considered, covering home, community, school, and hospital settings for children with disabilities.

Methods: We will follow the JBI methodology for systematic reviews of qualitative evidence. The search strategy will be conducted in 3 phases: initial limited search, comprehensive database search, and reference list search of the included articles. The MEDLINE, CINAHL Plus, PsycINFO, Scopus, Ichushi-Web, and CiNii databases will be searched, with no restrictions on language or publication date. Study selection, critical appraisal, data extraction, and data synthesis will be conducted by 2 independent reviewers. We will evaluate the final synthesized findings using the ConQual approach.

Systematic review registration number: PROSPERO CRD42024499042.