End-of-Life Care for People with Intellectual Disabilities: Paid Carer Perspectives

Journal of Applied Research in Intellectual Disabilities

Volumn 24, Issue 3, 2011, Pages 199-207

  Ryan, Karen ^a   Guerin, Suzanne ^b   Dodd, Philip ^b   Mcevoy, John ^c  

^a St Francis Hospice   (Ireland)

^b UNIVERSITY COLLEGE DUBLIN   (Ireland)

^c DUNDALK INSTITUTE OF TECHNOLOGY   (Ireland)

Author keywords

Caregivers; Intellectual disability; Learning disability; Mental retardation; Palliative care; Terminal care

Indexed keywords

EID: 79954495203     PISSN: 13602322     EISSN: 14683148     Source Type: Journal    
DOI: 10.1111/j.1468-3148.2010.00605.x     Document Type: Article

References (31)

1. Barron S. & Kelly C. (2006) Annual Report of the National Intellectual Disability Database Committee. Health Research Board, Dublin.
2. Brown H., Burns S. & Flynn M. (2002) Supporting People Though Terminal Illness and Death in Today and Tomorrow: The Report of the Growing Older With Learning Disabilities Programme. The Foundation for People with Learning Disabilities, London.
3. Bycroft L. (1994) Care of a handicapped woman with metastatic breast cancer. British Journal of Nursing 3, 126-133.
4. Carter G. & Jancar J. (1983) 'Mortality in the mentally handicapped: a 50-year survey at the stoke park group of hospitals'. American Journal of Mental Deficiency Research 80, 650-657.
5. Department of Health and Children (2001). Report of the National Advisory Committee on Palliative Care. Brunswick Press Ltd, Dublin.
6. Doka K. J. (1987) "Silent sorrow: grief and the loss of significant others". Death Studies 11, 455-469.
7. Doka K. (2005) Ethics, end-of-life decisions and grief. Mortality 10, 83-90.
8. Erlen J. A. & Frost B. (1991) Nurses perceptions of powerlessness in influencing ethical decisions. Western Journal of Nursing Research 13, 397-407.
9. Evenhuis E. (1997) Medical aspects of ageing in a population with intellectual disability: III. Mobility, internal conditions and cancer. Journal of Intellectual Disability Research 41, 8-18.
10. Hastings R. P. & Brown T. (2002) Behavioural knowledge, causal beliefs and self-efficacy as predictors of special educators emotional reactions to challenging behaviours. Journal of Applied Research in Intellectual Disabilities 46, 144-150.
11. Hatton C. (1999) Staff stress. In: Psychiatric and Behavioural Disorders in Developmental Disabilities and Mental Retardation (ed N. Bouras), pp. 427-438. Cambridge University Press, Cambridge.
12. Holtom M. (2001) The partnership imperative: joint working between social services and health. Journal of Management in Medicine 15, 430-445.
13. Institute of Medicine (1997). Approaching Death: Improving Care at the End of Life. National Academy Press, Washington DC.
14. Kenny D. T. & Cooper C. T. (2003) Introduction: occupational stress and its management. International Journal of Stress Management 10, 275-279.
15. Lawson D. A. & O'Brien R. M. (1994) Behavioural and self-report measures of burnout in developmental disabilities. Journal of Organizational Behaviour management 14, 37-54.
16. Ng J. & Li S. (2003) A survey exploring the educational needs of care practitioners in learning disability (LD) settings in relation to death, dying and people with learning disabilities. European Journal of Cancer Care 12, 12-19.
17. Oberle K. & Hughes D. (2001) Doctors' and nurses' perceptions of ethical problems in end-of-life decisions. Journal of Advanced Nursing 33, 707-715.
18. Papadatou D., Bellali T., Papazoglou I. & Petraki D. (2002) Greek nurse and physician grief as a result of caring for children dying of cancer. Pediatric Nursing 28, 345-353.
19. Pockney R. (2006) Friendship or facilitation: people with learning disabilities and their paid carers. Sociological Research Online 11. Available at: (accessed on 30 October 2010).
20. Read S. & Morris H. (2008) Living and Dying With Dignity: The Best Practice Guide to end-of-Life Care for People With a Learning Disability. Mencap, London.
21. Ritchie J. & Spencer L. (1993) Qualitative data analysis for applied policy research. In: Analysing Qualitative Data (eds A. Bryman & R. Burgess), pp. 173-194. Routledge, London.
22. Rose J. & Fletcher C. B. (1998) Investigating the relationship between stress and worker behaviour. Journal of Intellecual disability research 32, 163-172.
23. Schaufeli W. B. & Enzmann D. (1998) The Burnout Companion to Study and Practice: A Critical Analysis. Taylor and Francis, London.
24. Seaward B. L. (2004) Managing Stress. 4th edn. Jones and Bartlett, London.
25. Tetrick L. E. & Quick Q. C. (2001) Prevention at work: public health in occupational settings. In: Handbook of Occupational Psychology (eds L. E. Tetrick & J. C. Quick), pp. 3-18. American Psychological Association, Washington.
26. Todd S. (2004) Death counts: the challenge of death and dying in learning disability organisations. Learning Disability Practice 7, 12-15.
27. Tuffrey-Wijne I. (2009) The preferred place of care for people who are dying. Learning Disability Practice 12, 16-21.
28. Tuffrey-Wijne I., Hogg J. & Curfs L. (2007) End-of-life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: a review of the literature and available resources. Journal of Applied Research in Intellectual Disabilities 20, 331-344.
29. Vachon M. (1995) Staff stress in hospice/palliative care: a review. Palliative Medicine 9, 91-122.
30. Watson C. (1993) The role of the nurse in ethical decision-making in intensive care units. Intensive and Critical Care Nursing 9, 191-194.
31. Yang M. & Mcilfatrick S. (2001) Intensive care nurses' experiences of caring for dying patients: a phenomenological study. International Journal of Palliative Nursing 7, 435-441.