Personal assistance, independent living, and people with disabilities: An international systematic review (2013–2023)

Abstract

Background: The article discusses the contribution of personal assistance to the independent living of people with disabilities. This right is evolving at different speeds internationally, presents controversial aspects, and is under continuous debate. Objective: To synthesize the evidence relating to the promotion of self-determination and independent living through personal assistance. Methods: A systematic review was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A search for relevant literature published was conducted during March 2023 across nine databases. The findings of the included studies were coded and analyzed via inductive content analysis. Results: 26 articles were included, mostly qualitative, from four different continents. The analysis revealed six different key themes. The social framework highlighted the influence of international agreements and disability activism on cultural shifts in understanding disability. Secondly, healthy relationships and life or service expectations were emphasized. Key agents included users, personal assistants, family members, service providers, and other professionals. Personal assistants’ work context explored ethical dilemmas, training, and working rights. Decision-making about personal assistance involved factors like lack of information, access requirements, and funding. Lastly, the implications underscored the positive impact of personal assistance on independent living, while identifying threats, and best practices for improvement. Conclusions: This systematic review was the first to explore the promotion of independent living of people with disabilities through personal assistance schemes and highlights the need for governments to prioritize and coordinate efforts to ensure access for all, emphasizing the ethical imperative to progress toward social justice.