'Being there': The Experiences of Staff in Dealing with Matters of Dying and Death in Services for People with Intellectual Disabilities

Background
Research on staffed housing for people with intellectual disability has identified the challenges in achieving postitive 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.

Method
In depth qualitative interviews were held with 22 staff in 5 different providers and who had experienced, in total, 27 deaths of people with intellectual disability.

Results
The data highlight that staff felt providing a good quality of care at the end of life was an important but unrecognised dimension of their work. This work could be broken down into several different phases, dying, death and beyond death. Bad deaths were felt to be those deaths which prevented staff from 'being there' with individuals over those phases