Thinking about death and what it means: ... - Keele University

School of Nursing and Midwifery

Thinking about death and what it means: The perspectives of people with intellectual disabilities

Sue Read (Keele University) and Stuart Todd (Cardiff University)

Background

People with intellectual disabilities are experiencing increasing longevity (Carter & Jancar, 1983; Patja, 2001), and mortality studies are beginning to show changes in patterns of death that come with rising life expectancy. There is therefore, a new transition that is becoming embedded within the life course of people with intellectual disabilities: that is the transition from living to dying. This is a transition that few services or academics seem to be adequately prepared for within the intellectual disability world. Whilst there is little data around this aspect, without data on the perspectives that people with an intellectual disability hold around this sensitive area, professional intervention may be inaccurate or ineffective.

Aims of the research

Using a series of progressive focus groups, we want to explore what knowledge, fears, attitudes and beliefs that adults with intellectual disabilities have about loss, dying and death. The aims of the research are to:

  • Describe the encounters that adults with intellectual disability have had with loss, death and dying;
  • Examine the understanding people have about what could be described as the ‘dying’ or ‘terminal phase’ of life.
  • Explore their views as to what constitutes as a ‘good death’.
  • Produce data that can be used to develop educational tools to support training initiatives.
  • Provide insight for the ongoing development of research and practice at the interface of intellectual disability and palliative care services.

Funded by: Bailey Thomas Charitable Trust
Contact: Sue Read