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Exploring the experiences of people with intellectual disabilities when service users die
Author(s) -
Ryan Karen,
Guerin Suzanne,
Dodd Philip,
McEvoy John
Publication year - 2011
Publication title -
british journal of learning disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.633
H-Index - 39
eISSN - 1468-3156
pISSN - 1354-4187
DOI - 10.1111/j.1468-3156.2010.00662.x
Subject(s) - intellectual disability , service (business) , focus group , psychology , qualitative research , perception , palliative care , service provider , challenging behaviour , population , nursing , public relations , medicine , psychiatry , sociology , political science , business , social science , environmental health , marketing , neuroscience , anthropology
Accessible summary• People with intellectual disabilities are living for longer than ever before and are experiencing the deaths of their friends and other service users. • This study describes the experiences of people with intellectual disabilities who have lived through the death of a friend or service user from the point of view of staff from intellectual disability and palliative care services. • It is important to understand the experiences of people with intellectual disabilities to try and help people cope with the deaths of their friends. • The study shows that it helps to include people with intellectual disabilities when their friends become unwell and to talk openly with them about what is happening.Summary Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population’s palliative care needs. We report on findings from 16 focus groups held with staff in which participants described their perception of the experiences of people with intellectual disabilities when other service users die. Interviews were analysed using Framework Analysis. The findings highlight the emotional impact of the death of a friend on people with intellectual disabilities. Situations where staff facilitated the involvement of services users are described, and the study points to the benefits of this approach. Possible barriers to involvement are highlighted. The findings affirm the importance of ensuring that people with intellectual disabilities have a good understanding of the concept of death to alleviate the bereavement experience.