The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review.

The review included only English publications, so non-English experiences were missed. Most studies focused on parents, especially mothers, and fewer included fathers, siblings or other relatives. The reviewed studies had relatively small sample sizes because they were qualitative or mixed-method studies. The authors report that contextual details about caregiving were sparse in the included studies. Screening agreement was moderate to weak, which may have affected which studies were selected. Findings mainly reflect well-educated, middle-class families from Western countries, so they may not apply in other cultural or socioeconomic contexts. Family members of people with mild or moderate intellectual disabilities were not included.

The authors declared no conflicts of interest. The research was funded by the Dutch Ministry of Health, Welfare and Sport.

Do not treat these themes as evidence that a specific therapy improves outcomes. The review reports family members' experiences and needs, and the authors say the findings may not apply universally.