Background: Individuals with intellectual disability or autism exhibit suicidal behaviours at an equal or greater rate than the general population, yet little is known about associated risk factors. This study explores suicidality in these populations, focusing on their understanding of suicide and death and perceptions of their direct support…

Background: The perception and experience of death with respect to individuals with intellectual disability are almost unexplored in the Polish context. We aimed to understand how these persons conceptualise death, understand their experiences associated with it, and the meanings they ascribe to it. Method: The study was designed and conducted…

Background: People with intellectual disabilities face inequities in access to end-of-life care and inequalities in its quality and delivery. This review aimed to synthesise qualitative evidence to understand their own perspectives about what contributes to optimal end-of-life care. Methodology: Data from 93 participants in five qualitative…

Background: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. Method: This qualitative study used reflexive thematic analysis. Two focus groups were held via…

Background: Rates of death and avoidable deaths are reportedly higher among people with intellectual and developmental disabilities. This study contributes to our understanding of how mortality and intellectual and development disabilities are associated. Method: General population and intellectual and developmental disabilities adult cohorts were…

Background: Increasing numbers of older adults with intellectual disabilities are living with ageing parents. These families need support to plan for the future to avoid crisis interventions following parental death. Method: Interviews and focus groups were conducted with people with intellectual disabilities (aged 40+) (N = 9), parents (N = 11)…

Background: A paucity of qualitative research on sensitive topics that focuses on participants with intellectual disabilities leaves their views unexplored. This scoping review mainly aimed to provide an overview of qualitative data collection methods used in research involving participants with intellectual disabilities to explore death and…

Objectives: Characterise the circumstances associated with death during admission of adults with Down syndrome (DS) and to identify predictors of mortality. Patients and Methods: Observational study based on data on all emergent admissions of adults with DS to hospitals of the Spanish National Health System between 1997 and 2014. We analysed…

Background: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered. Method: This paper forms part of a larger cross-sectional study of deaths in a defined population of adults with intellectual disabilities. Data…

Background: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. Methods: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care…

Background: This study examines recent trends in the age-at-death disparity between adults with and without intellectual and/or developmental disabilities in the United States. Method: Data were from the 2005-2017 U.S. death certificates. Average age at death was compared between adults whose death certificate did or did not report an intellectual…

Background: This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included…

Background: People with intellectual disabilities experience significant health inequities. The aim of this report is to understand the circumstances leading to death from COVID-19 in people with intellectual disabilities. Method: Local areas in England prioritised reviewing 200 deaths of adults with intellectual disabilities. Of these,…

Background: Population-based data are presented on the nature of dying in intellectual disability services. Methods: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths,…

Background: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. Method: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth,…