Self-determination of people with profound intellectual and multiple disabilities.
Synne Nese Skarsaune
PMID 35869593WHAT IT FOUND
For people with profound intellectual and multiple disabilities, preferences may be shown through body movements, sounds, facial expressions, or turning away.
The review asks clinicians to learn each person's signals with trusted supporters, not assume speech is needed for self-determination.
Key findings
01Eight included articles used real-life descriptions to treat people with profound intellectual and multiple disabilities as sources of knowledge.
02The review searched peer-reviewed articles from 2000 until January 2022, generated 658 articles, and found that only 3 met the narrow explicit criteria.
03Self-determination was described as a relational process of being understood through embodied communication, not merely independent choice.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The review is not a systematic review, and the authors state that they did not presume to cover the entire field. The initial search generated 658 articles, but the final review included only eight articles, so the evidence base is very small. The narrow explicit search yielded 3 articles, and some included papers are philosophical reflections rather than empirical studies. Many findings rest on researcher interpretation of embodied behaviour, and the review does not test whether these interpretive approaches improve self-determination, communication, consent, or care outcomes.
The easy way to misread this
Do not read the case descriptions as proof that staff can reliably identify a person's preference from body movements alone. The review says these interpretations are partial, situational, and co-constructed with trusted others, and it tested no intervention.