Perceptions of People With Intellectual Disabilities on Autonomy and Decision-Making in Daily Life: A Systematic Review and Synthesis of Qualitative Studies.

Background: This qualitative systematic review aimed to synthesise research on the experiences of people with an intellectual disability on autonomy and decision-making in their everyday lives.

Method: A systematic review was completed of studies published between 2012 and 2024 that included qualitative data exploring perceptions of people with an intellectual disability aged 18 and over on autonomy and decision-making in their lives, excluding quantitative studies and those only including carers. Searches (conducted April-August 2022, updated June 2024) were based on terms linked to intellectual disability, autonomy and decision-making. Databases included PsycINFO, PsycARTICLES, PubMed, Social Sciences Full Text, SocINDEX, CINAHL, MEDLINE and Scopus. The review protocol was registered on Prospero ID: CRD42022333120.

Results: A total of 15 studies, including 246 people with an intellectual disability, met the inclusion criteria. Quality was assessed using the Critical Appraisal Skills Programme criteria. Thematic synthesis generated four primary analytical themes: 'We know what's best for you', 'The loudest voice gets heard', 'The meaning of autonomy' and 'Conflicting views on service role'.

Conclusion: The findings of this synthesis suggest that people with an intellectual disability often feel that their autonomy is not prioritised and that decisions are often made for them without their input. The findings highlight the need for person-centred approaches and systemic change to support the autonomy of people with an intellectual disability. Included studies often neglected to consider the researcher-participant relationship and used varied data collection and analytic methods, which produced heterogeneity in the review findings. Future research is needed to explore the impact of societal attitudes and beliefs on the autonomy of people with an intellectual disability, as well as the effectiveness of person-centred approaches in promoting autonomy.