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

Published online by Cambridge University Press:  04 May 2011

Karen Ryan ,
Suzanne Guerin ,
Philip Dodd  and
John McEvoy
Karen Ryan*
Affiliation:
St Francis Hospice, Dublin, Ireland
Suzanne Guerin
Affiliation:
University College Dublin, School of Psychology, Dublin, Ireland
Philip Dodd
Affiliation:
St. Michael's House, Dublin, Ireland; University College Dublin, Centre for Disability Studies, Dublin, Ireland
John McEvoy
Affiliation:
Midway Services, Co. Meath, Ireland; Dundalk Institute of Technology, School of Nursing, Midwifery and Allied Sciences, Dundalk, Ireland
*
Address correspondence and reprint requests to: Karen Ryan, St. Francis Hospice, Station Rd., Raheny, Dublin 5, Ireland. E-mail: kryan@sfh.ie
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Abstract

Objective:

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.

Method:

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

Results:

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.

Keywords

Palliative careDeathCommunicationIntellectual disabilityMental retardation
Type
Review Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 2 , June 2011 , pp. 201 - 208
Copyright
Copyright © Cambridge University Press 2011

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