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.

Irish mothers' experiences of providing support in decision‐making to adults with intellectual disabilities: A qualitative study

“…The literature on the role of family members in supporting the decision-making of adults with intellectual disabilities is limited (Dean et al, 2021;Kuld et al, 2023). Issues that may prevent family members from fully embracing the concept and practice of SDM include parents/guardians feeling protective towards their son/daughter and struggling to view them as an adult, which can lead to decisions being made without consultation under the assumption that the parent/guardian knows best (Almack et al, 2009;Casey et al, 2023;Curryer et al, 2015;Mitchell, 2012).…”