Skip to main content Accessibility help

Communication contexts about illness, death and dying for people with intellectual disabilities and life-limiting illness

  • Karen Ryan (a1), Suzanne Guerin (a2), Philip Dodd (a3) and John McEvoy (a4)



The general population has been involved in considerable debate about communication and awareness within the context of death and dying. However, there has been little research on how matters of communication on this topic are handled for people with life-limiting illness and intellectual disabilities. This qualitative study explored how staff managed communication about death and dying with people with intellectual disabilities in a Health Service Executive area in Ireland.


Ninety-one individuals took part in 16 focus groups. Interviews were analysed using framework analysis.


Participants infrequently discussed death and dying with people with intellectual disabilities. Participants operated most commonly in suspicious awareness environments with people with mild-to-moderate intellectual disabilities, and closed awareness environments with people with severe intellectual disabilities. The majority of participants did not hold absolute opinions that talking about illness, death, and dying with people with intellectual disabilities was “wrong.” Rather, they were concerned that their lack of skill and experience in the area would cause harm if they engaged in open conversations. Relatives had an influential role on the process of communication. Participants were strongly motivated to provide quality care and were willing to consider alternative approaches to communication if this would benefit people with intellectual disabilities.

Significance of results:

Although there has been a shift toward conditional open awareness of death and dying in Western society, people with intellectual disabilities have not been afforded the same opportunity to engage in open discussion of their mortality. This study points to the urgent need to engage in debate about this issue in order to ensure that people with intellectual disabilities receive high quality palliative care toward the end of life.


Corresponding author

Address correspondence and reprint requests to: Karen Ryan, St. Francis Hospice, Station Rd., Raheny, Dublin 5, Ireland. E-mail:


Hide All
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. London: The Foundation for People with Learning Disabilities.
Department of Health. (2001). Valuing People: A New Strategy for Learning Disability for the 21st Century, Cm 5086. London: Department of Health.
Dodd, P., Dowling, S. & Hollins, S. (2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research, 49, 537543.
Field, D. & Copp, G. (1999). Communication and awareness about dying in the 1990s. Palliative Medicine, 13, 459568.
Glaser, B.G. & Strauss, A.L. (1965). Awareness of Dying. Chicago: Aldine.
Leick, N. & Davidson-Neilson, M. (1991). Healing Pain. London: Routledge.
Lennox, N., Diggens, J. & Ugoni, A.M. (1997). The general practice care of people with intellectual disability: Barriers and solutions. Journal of Intellectual Disability Research, 41, 380390.
Rees, S., Cullen, C., Kavanagh, S., et al. (2004). Learning disabilities. In Health Care Needs Assessment, Vol 1. (2nd ed.), Stevens, A., Raftery, J., Mant, J., et al. (eds.). pp. 451542. Oxford: Radcliffe Medical Press.
Ritchie, J. & Spencer, L. (1993). Qualitative data analysis for applied policy research. In Analysing Qualitative Data, Bryman, A. & Burgess, R. (eds.). pp 173194. London: Routledge.
Todd, S. (2002). Death does not become us: The absence of death and dying in intellectual disability research. Journal of Gerontological Social Work, 38, 225239.
Tuffrey-Wijne, I. (2002). The palliative care needs of people with intellectual disabilities: A case study. International Journal of Palliative Nursing, 8, 222232.
Tuffrey-Wijne, I., Hogg, J. & Curfs, L (2007). End of life and palliative care for people with intellectual disability who have cancer or other life-limiting illness: A review of the literature and available resources. Journal of Applied Research in Intellectual Disabilities, 20, 331344.
World Health Organization. (1992). The ICD-10 Classification of Mental and Behavioural Disorders. Clinical Descriptions and Diagnostic Guidelines. Geneva: World Health Organization.


Related content

Powered by UNSILO

Communication contexts about illness, death and dying for people with intellectual disabilities and life-limiting illness

  • Karen Ryan (a1), Suzanne Guerin (a2), Philip Dodd (a3) and John McEvoy (a4)


Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed.