2.3.2 Thinking about death and what it means: Perspectives of people with intellectual disabilities (94)

Sue Read, Senior Lecturer, School of Nursing and Midwifery, Keele University, Stoke on Trent, United Kingdom s.c.read@nur.keele.ac.uk

Abstract:

Background:

People with intellectual disabilities will come to a dying phase of their lives, yet care professionals may be uncertain about how to talk (and support) the person at such a sensitive time. This paper will introduce a collaborative research study in the UK, funded by Bailey Thomas Charitable Trust.The overall aim of this study is to explore and critically examine the understandings and experiences that adults with an intellectual disability have about loss, death and dying.

Aim:

This paper will introduce the aims, objectives and rationale for the research undertaken; explore consent issues and the ethical approval process; describe methodological approaches; and present the findings.

Methods:

Previous research has identified that adults with intellectual disabilities are eager to talk about sensitive topics such as death and dying when given the opportunity to do so in a supportive, comfortable and engaging environment (Read, et al, 2000; Read & Papakosta–Harvey, 2004). Focus groups provided an ideal method to explore the perceptions of death and dying among this population. Two groups of adults with intellectual disabilities (n=-6; n=10) in both North Staffordshire and South East Wales (n=6; n=6) attended a series of three progressive focus groups. The focus groups had identified primary foci, and were audio-taped, transcribed and analysed using grounded theory.

Results:

Sharing the process of developing the research, and the challenges of conducting it, will be useful experiences for contemporary and experienced researchers alike. This study used traditional research approaches with a sensitive population to facilitate consumer perspectives around death and dying. The results will contribute to the growing body of knowledge around death, dying and bereavement from a unique perspective: namely people with intellectual disabilities.

Biography:

Sue Read, PhD, M.A., RNMH, Cert.Ed. (FE), Cert. in Bereavement Studies is a senior lecturer in Nursing at the School of Nursing and Midwifery, Keele University, Staffordshire. She has worked in the area of learning disability since 1976. Her PhD involved developing a unique, specialist bereavement counselling and support service for people with learning disabilities in North Staffordshire. She is an international speaker, and has had numerous publications around loss, death, dying and palliative, particularly in relation to people with a learning disability. She is the editor of ‘Palliative Care for People with Learning Disabilities’ which is published by Quay Books. She is currently working on a collaborative research study with a colleague (Dr. Stuart Todd, the Welsh Centre for Learning Disabilities, Cardiff) to explore perceptions of death and dying with people with learning disabilities. Her most recent book is a bereavement counselling manual for people with learning disabilities, available from Quay Books, London.