Teresa T Moro1, Teresa A Savage2, Sarah Gehlert3. 1. College of Nursing, Rush University Medical Center, Chicago, IL, USA. 2. Department of Women, Children, and Family Health Science, College of Nursing, Chicago, IL, USA. 3. E. Desmond Lee Professor of Racial and Ethnic Diversity, George Warren Brown School of Social Work, St. Louis, MO, USA.
Abstract
BACKGROUND: The nature and quality of end-of-life care received by adults with intellectual disabilities in out-of-home, non-institutional community agency residences in Western nations is not well understood. METHOD: A range of databases and search engines were used to locate conceptual, clinical and research articles from relevant peer-reviewed journals. RESULTS: The present authors present a literature review of the agency, social and healthcare supports that impact end-of-life care for adults with intellectual disabilities. More information is needed about where people with intellectual disabilities are living at the very end of life and where they die. CONCLUSIONS: The support needs for adults with intellectual disabilities will change over time, particularly at the end of life. There are some areas, such as removing barriers to providing services, staff training, partnerships between agencies and palliative care providers, and advocacy, where further research may help to improve the end-of-life care for adults with intellectual disabilities.
BACKGROUND: The nature and quality of end-of-life care received by adults with intellectual disabilities in out-of-home, non-institutional community agency residences in Western nations is not well understood. METHOD: A range of databases and search engines were used to locate conceptual, clinical and research articles from relevant peer-reviewed journals. RESULTS: The present authors present a literature review of the agency, social and healthcare supports that impact end-of-life care for adults with intellectual disabilities. More information is needed about where people with intellectual disabilities are living at the very end of life and where they die. CONCLUSIONS: The support needs for adults with intellectual disabilities will change over time, particularly at the end of life. There are some areas, such as removing barriers to providing services, staff training, partnerships between agencies and palliative care providers, and advocacy, where further research may help to improve the end-of-life care for adults with intellectual disabilities.