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

Background: Collaboration with healthcare professionals is crucial in arranging necessary lifelong support for people with intellectual disabilities. However, family members often face challenges when collaborating with healthcare professionals. Family members of people with severe and profound intellectual disabilities often encounter many professionals due to medical needs and the severity of their disability. Therefore, providing a comprehensive overview of existing literature on the needs and experiences of family members of relatives with severe or profound intellectual disabilities when collaborating with healthcare professionals is needed to provide insight into how to stimulate and support collaboration.

Method: The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Seven databases were systematically searched and a thematic analysis was conducted on 23 studies.

Results: Five overarching themes were identified: (1) need for a balanced view of their relative; (2) need for recognition and compassion; (3) healthcare professionals facilitating close and active involvement; (4) desired qualities of healthcare professionals and (5) conditions for successful interaction between family members and healthcare professionals.

Conclusions: The results indicated distinct needs that family members had for themselves and their relatives, as well as desired qualities (e.g. trustworthiness) and supporting factors (e.g. information). Furthermore, the review highlighted persisting needs, such as the need for information and empathy, as well as emerging needs, such as the desire to be recognised as experts and to develop personal bonds with healthcare professionals. These insights can inform future research by identifying areas that require deeper exploration.