Experiences and perceptions of everyday decision-making in the lives of adults with intellectual disabilities, their care partners and direct care support workers.

Abstract

Background: Decisional support is important to people with intellectual disabilities. This review explores: i) how everyday decision-making is perceived and/or experienced by adults with intellectual disability, their care partners and direct care support workers (DCSWs); ii) techniques/approaches used to support everyday decision-making; and iii) barriers/facilitators encountered. Method: PRISMA systematic review methodology using PsycInfo, PubMED, Web of Science, CINAHL and Scopus. Results: Eighty-one papers were included [qualitative (n = 69), quantitative (n = 7), mixed methods (n = 5)]. Adults with intellectual disability reported wanting to make decisions and needing support. Care partner support was affected by concerns about safety and decisional capacity. DCSWs reported difficulty balancing client decisions and care partner concerns when providing support. Supported Decision-Making (SDM) was identified as a key method of support. Barriers and facilitators were interconnected and impacted by stressors. Conclusion: This topic is under-researched and ill-defined. Supported decision-making is an increasingly popular approach whose application requires further exploration.