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: The aim of this study was to examine the characteristics associated with the grieving process among a population with intellectual disability and the influence of particular variables. Materials and Methods: The sample was composed of 380 participants with intellectual disability, on whose behalf 149 professionals completed a 20-item…

Background: A paucity of information is available on direct care workers' (DCWs') experiences with loss when their clients (people with intellectual and developmental disabilities [I/DD]) die. This study explored DCWs' grief experiences, their coping methods and their needs for support. Methods: A thematic analysis approach was used to examine…

Background: There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. Aim: The aim of this study was to develop guidelines for decisions about (non-)disclosure of bad news around life-limiting illness and death to people with intellectual…

Background: Research on staffed housing for people with intellectual disability has identified the challenges in achieving positive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying.…

Background: The topic of funerals within the life cycle approach to care in the UK remains largely absent. This small exploratory study sought to investigate how practitioners deal with this sensitive issue and to capture the views of older people with and without intellectual disabilities about funerals. Methods: A semi-structured questionnaire…

Background: Care staff are an important source of information and support for people with intellectual disabilities following bereavement. The purpose of this study was to explore staff perceptions of service users' conceptualizations of death, reactions to bereavement, required levels of support and staff confidence in providing post-bereavement…

Background: Individuals with intellectual disability are at higher risk of premature death compared with individuals without intellectual disability, and therefore parents of people with intellectual disability are more likely to outlive their children. However, there has been relatively little research investigating the bereavement experiences of…