Thinking about death and what it means: The perspective of people with intellectual disability

Death and dying are important but hidden issues in intellectual disability services, and there is limited literature around the personal experiences of death and dying from people with intellectual disabilities themselves. In this paper we explore the experiences of 28 adults with intellectual disabilities in two parts of the UK: Wales and England. Focus groups were used as a vehicle to help participants to talk about loss, dying and death and to share their experiences of their involvement (or not) in this sensitive area of their life. The results indicated a sense that this population are still shielded from death related issues, particularly around the dying phase. The results will inform the care and supports offered by direct care staff, and have implications to the policy development bodies around end of life care and ID services.