Supporting People with Intellectual Disabilities Experiencing Loss and Bereavement

Rachel Forrester-Jones is Senior Lecturer in Community Care at the Tizard Centre, University of Kent, UK, where she also engages in service consultancy. She researches issues related to loss, as well as social networks and social support of different client groups including students with disabilities, and she has been Master of Rutherford College, University of Kent since 2002. Erica Brown is Head of Research and Development at Acorns Children's Hospice in Birmingham. She has lectured and published internationally in the field of special education, spiritual and religious care, palliative care and bereavement. She is also a trained bereavement counsellor. Sue Read, PhD, is Professor of Learning Disability Nursing at Keele University, UK, and has worked in the area of intellectual disabilities since 1976. Her research interests include loss, death, dying and bereavement specifically, although not exclusively, with people with intellectual disabilities. She is also a practicing clinician supporting people with an intellectual disability and their families with issues of loss, end of life care and bereavement. She has disseminated her work widely through international conferences and publications.

Editor Sue Read has assembled a strong international team of authors from the UK, Ireland, USA and Australia that includes researchers, clinicians, a parent and a woman with an intellectual disability, so providing multiple perspectives on key issues. The primary focus is on people with intellectual disabilities, but importantly several chapters focus on the needs and experiences of caregivers (both family members and disability service staff). The book is characterised by empathy and compassion, with a consistent emphasis on similarities not differences. Issues are contextualized through analysis of theories about death and bereavement, as well as through emphasising the spectrum of responses to death and dying. This is a practical book with information about assessment and instruments, as well as practice tips. Most chapters include an individual story or detailed case study. Without exception these are very sensitively told and of immense assistance in understanding and responding to the issues in human terms. Those providing personal or professional support to a person with an intellectual disability who has experienced loss will find this book a rich and rewarding source of information, practical ideas and inspiration.

• Acknowledgements. Foreword by Owen Barr, Head of School of Nursing, University of Ulster, UK. Contributors. Introduction. Sue Read, Professor of Learning Disability Nursing, Keele University, UK. Part I: Theoretical Perspectives. 1. Loss in the Caring Context. Sue Read. 2. Living with Loss. Sue Read and Mary Davies, a woman with intellectual disabilities and member of Reach, UK. 3. Grief and Mourning. Sue Read. 4. Complicated Grief. Philip Dodd, Director of Psychiatry, St. Michael's House, Clinical Senior Lecturer, Trinity College Dublin and Senior Lecturer, Centre for Disability Studies, University College Dublin, Ireland, and Noelle Blackman, CEO of Respond and Research Fellow, University Hertfordshire, UK. 5. Spirituality. William Gaventa, Director of Community and Congregational Supports, Elizabeth M. Boggs Center on Developmental Disabilities and Associate Professor, UMDNJ-Robert Wood Johnson Medical School, Georgia, US. 6. Psychological Support in Health Care. Helena Priest, Senior Lecturer, Keele University and Research Director, Doctorate in Clinical Psychology, Staffordshire University, UK. Part II: Contemporary Practice Issues. 7. Loss and Resilience. Linda Machin, Honorary Research Fellow, Keele University, UK. 8. Working Creatively to Facilitate Loss. Sue Read. 9. Caring Fatigue. Ted Bowman, Adjunct Professor, University of Minnesota (Family Education) and University of Saint Thomas (Social Work), Minnesota, US. 10. Supporting Professional Carers. Michele Wiese, Research Associate, University of Sydney, Australia. 11. Advocacy, Empowerment and Communication. Patsy Corcoran, REACH Coordinator, Asist Advocacy Services, UK. Part III: Specialist Contexts and Considerations. 12. Loss, the Family and Caring. Mike Gibbs, Lecturer in Learning Disability Nursing, Keele University, UK. 13. Loss and People with Autism. Rachel Forrester-Jones, Reader in Health, Community and Social Care, Tizard Centre, UK. 14. Loss in Forensic Environments. Ben Hobson, Clinical Psychologist, National High Secure Learning Disability Service, Rampton Hospital, UK, Sue Read and Helena Priest. 15. Supporting Children and Young People with an Intellectual Disability and Life-Limiting Conditions. Erica Brown, Senior Lecturer in Early Childhood, Institute of Education, University of Worcester, UK. 16. Loss and End of Life Care. Karen Ryan, Consultant in Palliative Medicine, St Francis Hospice and Mater Hospital and Senior Investigator, All Ireland Institute of Hospice and Palliative Care, Suzanne Guerin, Centre for Disability Studies, University College Dublin and All Ireland Institute of Hospice & Palliative Care and Phil Larkin, School of Nursing and Midwifery, University College Dublin and All Ireland Institute of Hospice & Palliative Care, Ireland. 17. Living with Shattered Dreams – A Parent's Perspective. Mandy Parks, parent of a daughter with severe disabilities, UK. 18. Research, Inclusivity and Marginalised Groups. Sue Read. Conclusion. Sue Read. References. Index.