RESUMO
BACKGROUND: The article discusses the contribution of personal assistance for 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.
RESUMO
El propósito de este estudio es, desde la óptica del Trabajo Social, identificar los principales problemas éticos que se le presentan a las profesionales de la asistencia personal al desarrollar sus funciones de ayuda o apoyo a las personas con discapacidad, así como detectar si las profesionales consideran necesaria una mayor formación ética. Para ello, se optó por un procedimiento mixto mediante la aplicación de dos cuestionarios ad hoc. El primero, de preguntas abiertas, se dirigió a 31 profesionales en activo de la asistencia personal en España en la fase de recogida de información. El segundo, de preguntas cerradas o respuesta breve, se dirigió a 52 profesionales con experiencia previa en dicha figura profesional. Mediante el análisis de su discurso se corroboró la necesidad de afrontar diferentes conflictos y problemas éticos durante la prestación del servicio de asistencia personal en distintos ámbitos y situaciones. Podemos concluir que la formación ética de las profesionales es insuficiente para el desarrollo de sus funciones en condiciones de calidad y respecto a la dignidad y la autonomía personal de las personas usuarias. (AU)
The purpose of this study is, from the point of view of Social Work, to identify the main ethical problems that personal assistance professionals face when developing their functions of helping or supporting people with disabilities, as well as detecting whether professionals consider that greater ethical training is necessary. To do this, a mixed method was chosen through the application of two ad hoc questionnaires. The first, with open questions, was addressed to 31 active personal assistance professionals in Spain in the information collection phase. The second, with closed questions or short answers, was addressed to 52 professionals with previous experience in said professional figure. Through the analysis of their speech, the need to face different conflicts and ethical problems during the provision of the personal assistance service in different areas and situations was corroborated. We can conclude that the ethical training of professionals is insufficient for the development of their functions in quality conditions and with respect to the dignity and personal autonomy of the users. (AU)
