The Phenomenon of Pain in Adults With Intellectual Disability: A Qualitative Systematic Review.
Alice Trainer, S J Summers, Alan Bowman
PMID 40637264WHAT IT FOUND
Adults with intellectual disability, parents and nurses described pain as often hidden, hard to recognise and inconsistently assessed.
They pointed to direct questions, trusted relationships and individual verbal and non-verbal cues.
Key findings
01Pain was often hidden or not reported, and recognition depended on noticing subtle individual changes.
02Pain expression varied widely, including spoken words, unusual words, crying, sounds and behaviour changes.
03Assessment and management were often trial-and-error, with delays, limited medication effectiveness and reliance on trusted carers.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
Only seven studies met the inclusion criteria, and their samples were small, so the themes may not transfer widely. All included studies were conducted in the UK, so the findings may not apply to other countries or cultures. The synthesis is based on the reviewers' interpretation of the original studies, and the original studies often did not describe how researchers handled their own influence, analysis or ethics. No studies were excluded after quality appraisal, so weaker reports were still included. The review only included studies that explicitly studied pain, which may have missed relevant work. Only one reviewer led the synthesis, and triangulation was not used during translation and synthesis.
Declared interests
The authors declared no conflicts of interest.
The easy way to misread this
Do not read these themes as evidence that any pain communication or assessment programme works. The review synthesises qualitative experiences from seven small UK studies, not tested interventions.