Experiences of children and adults having a sibling with profound intellectual and multiple disabilities: a...

Advances in medical care have enabled an increasing number of children with profound intellectual and multiple disabilities (PIMD) to live beyond early infancy and childhood. However, the burden of caregiving and restrictions on family life markedly impact the siblings of children with PIMD. To our knowledge, no qualitative systematic review has yet explored the experiences of these siblings.

This review aimed to synthesize the experiences of individuals, both children and adults, having a sibling with PIMD.

Searches were conducted in MEDLINE (Ovid), CINAHL (EBSCO), APA PsycINFO (Ovid), Scopus, Ichushi-Web, CiNii, and MedNar databases between July 31 and August 19, 2024, and on January 14, 2026. There were no restrictions based on language or country.

This review included qualitative studies exploring the experiences of people with a sibling with PIMD under 20 years old. Areas considered included caregiving burden, family relationships, school life, difficulties, challenges, dissatisfaction, and stress. PIMD was defined as an IQ ≤ 40 and an inability to walk unaided; individuals meeting only one of these criteria were excluded. Studies conducted in any setting were considered. Study selection, critical appraisal, data extraction, and data synthesis followed the JBI guidelines for qualitative systematic reviews, and synthesized findings were assessed using the ConQual approach.

Ten studies met the inclusion criteria, yielding 39 findings based on participants' voices. All findings were unequivocal and included data from older and younger siblings. These findings were organized into 12 categories and synthesized into three themes: (1) being with sibling (e.g., growth, acceptance, and the impact on personal time); (2) dynamics within the family unit (e.g., current and future care considerations); and (3) experiences outside the family (e.g., misunderstanding by others and seeking support). According to the ConQual criteria, all three main themes were assigned low confidence ratings.

This review underscores the importance of providing comprehensive support to both children and adults with siblings who have PIMD. Although participants reported satisfaction in their relationships with their sibling with PIMD and their parents, they expressed concerns about caregiving responsibilities and their future. Ongoing, multidisciplinary interventions may be required to effectively meet their needs.

PROSPERO CRD42024499042.