Perceptions of People With Intellectual Disabilities on Autonomy and Decision-Making in Daily Life: A Systematic Review and Synthesis of Qualitative Studies.
James Sheerin, Fionnuala Larkin, Samantha Dockray
PMID 40936314WHAT IT FOUND
People with intellectual disabilities described being excluded from everyday decisions by family and staff who assumed they knew best.
They valued support that listened and guided rather than restricted, but felt their own preferences were often ignored in favour of service rules.
Key findings
01Participants frequently reported that family and staff made decisions for them without consultation, often overriding their choices due to safety concerns or lack of trust in their capability.
02When participants did voice their preferences, they often felt unheard or that their input did not lead to any change in practice, resulting in feelings of disempowerment.
03Participants defined autonomy as having the freedom to make their own choices, including those that might be considered poor or risky, and viewed this as central to their identity and normal adult life.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The review only included studies published in English, which may bias findings towards Anglophone countries and overlook cultural differences in how autonomy is viewed. There was heterogeneity in the data collection and analysis methods across the 15 included studies. Several included studies lacked detailed reporting on ethical considerations, such as informed consent processes. The review synthesised qualitative themes and perceptions; it does not measure the effectiveness of specific interventions or outcomes.
Declared interests
The authors declare no conflicts of interest. The study was funded by the Health Service Executive.
The easy way to misread this
Do not interpret these findings as evidence that autonomy-focused interventions improve clinical outcomes. This review reports the subjective perceptions and experiences of people with intellectual disabilities regarding decision-making; it does not measure the efficacy of any specific therapeutic approach or service model.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →