Palliative and End-of-Life Care Needs of People With Intellectual Disabilities: A Meta-Ethnography

Abstract

The life expectancy of people with intellectual disabilities has increased over the past few decades; consequently, they are experiencing more chronic illnesses and life-limiting conditions. As a result, they require palliative and end-of-life care. Nonetheless, evidence highlights marked disparities in access to suitable care during this period, largely stemming from healthcare professionals' limited understanding of their specific needs. To synthesise the perspectives and experiences of people with intellectual disabilities regarding their palliative and end-of-life care needs. This meta-ethnographic review searched for relevant studies from four databases: PubMed, MEDLINE, PsycINFO and CINAHL. In addition, grey literature and citation searches were conducted to ensure a comprehensive search. The included studies underwent qualitative appraisal, and the data were analysed using a meta-ethnographic approach. The review included 14 qualitative studies published between 2002 and 2025 and 138 participants with intellectual disabilities from diverse countries. The synthesis identified four interconnected domains: communication, autonomy, relationships and environment (CARE). People with intellectual disabilities expect clear communication that is open, transparent and accessible. In addition, they want to make decisions about their care and maintain control of what is happening to them. They consider maintaining relationships with family members, friends and caregivers to be important sources of emotional support and connection. Finally, they want to be in their familiar environments, focused on dignity, comfort and maintenance of routines and activities, which are critical components of well-being. Professionals and caregivers require a system to understand the complex palliative care needs of people with intellectual disabilities, and the CARE framework provides a structured guide to address these challenges. It emphasises person-centred approaches that involve individuals with intellectual disabilities in care decisions, facilitating the delivery of fair and compassionate care through a collaborative ‘CARE’ model.