Palliative & End of Life Care Research Group
Professor Sue Read
Prof. Sue Read, is Professor of Learning Disability Nursing, at the School of Nursing and Midwifery, Keele University, Staffordshire, UK., and is Research Lead for developing research capacity and capability within the School. 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’ published by Quay Books, and author of a bereavement counselling manual for people with learning disabilities, also available from Quay Books, London. She is also co-author of ‘Living and Dying with Dignity- the best practice guide to end of life care for people with a learning disability’ (Mencap, 2009). Her research interests include loss, death, dying and bereavement specifically, although not exclusively, with people with a learning disability and aspects of user and carer engagement in research. She has currently developed a flexible, computer based, interactive bereavement tool to support loss and transition, in conjunction with people with learning disabilities.
Sue has been involved in supporting people with a learning disability around loss, dying and bereavement for many years. Most of her research focus has focused on this population specifically, but not exclusively. She is particularly interested in:
- Qualitative methodologies, including the use of ‘photo-voice’, case studies, focus groups, narratives, participatory action research and grounded theory.
- The development of toolkits to support access to healthcare (including end of life care) for children, young people and adults with a learning disability.
- User and carer engagement the across the research continuum, particularly around marginalised populations.
- How research can empower marginalised people and can be used as vehicle to promote active involvement.
- Disenfranchised dying.
- Ageing issues associated with learning disability.
- Disenfranchised grief and its subsequent impact.
- Storytelling and creative writing.
- Psycho-social and emotional support for people with a learning disability.
- End of life care for people with a learning disability-policy, practice and educational issues.
- Developing and evaluating resources to promote better support at the end of life e.g. films; interactive web based software to promote communication around sensitive topics.