SynthesisJournal of intellectual disability research : JIDR2025
The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review.
Synthesis in Journal of intellectual disability research : JIDR, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 5 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
5 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review.Journal of intellectual disability research : JIDR · 2025Pooled it
- Quality of life among individuals with profound intellectual and multiple disabilities: crossed perspectives of institutional caregivers and parents.Health and quality of life outcomes · 2025Trial
- Continued Involvement: A Scoping Review on Family Members' Needs and Experiences Collaborating With Support Staff for Relatives With Intellectual Disabilities Living Outside the Family Home.Journal of intellectual disability research : JIDR · 2026Article
- Article
- An Ongoing Process: The Implementation of an Intervention for People With Profound Intellectual and Multiple Disabilities Over Time.Journal of applied research in intellectual disabilities : JARID · 2025Article
Corrections and comments
- Erratum issued
Authors and funding
4 authors.
Funding
Abstract
backgroundCollaboration 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.
methodThe 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.
resultsFive 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.
conclusionsThe 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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.