Making sense of bereavement in people with profound intellectual and multiple disabilities

carer perspectives

Hannah Young (Lead / Corresponding author), James Hogg, Brenda Garrard

Research output: Contribution to journalArticle

1 Citation (Scopus)
89 Downloads (Pure)

Abstract

Background: People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has considered how carers conceptualise bereavement in relation to this group.
Method: Semi-structured interviews obtained responses from 7 carers. Transcripts were examined using Interpretative Phenomenological Analysis. Results: Two super-ordinate themes emerged: ‘difficulty articulating the experience of loss’ and ‘making sense of bereavement through familiar patterns’.
Conclusions: Carers conceptualise bereavement primarily in cognitive terms, but also take account of relational factors mediating loss. Implications for training and further research are outlined.
Original languageEnglish
Pages (from-to)1035-1044
Number of pages10
JournalJournal of Applied Research in Intellectual Disabilities
Volume30
Issue number6
Early online date24 Aug 2016
DOIs
Publication statusPublished - 11 Oct 2017

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multiple disabilities
Bereavement
Intellectual Disability
Caregivers
cognitive theory
mismatch
experience
disability
Disabled Persons
death
Research
present
interview
Research Personnel
Interviews
Group

Keywords

  • profound intellectual and multiple disabilities
  • bereavement
  • carer
  • family
  • grief

Cite this

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abstract = "Background: People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has considered how carers conceptualise bereavement in relation to this group.Method: Semi-structured interviews obtained responses from 7 carers. Transcripts were examined using Interpretative Phenomenological Analysis. Results: Two super-ordinate themes emerged: ‘difficulty articulating the experience of loss’ and ‘making sense of bereavement through familiar patterns’.Conclusions: Carers conceptualise bereavement primarily in cognitive terms, but also take account of relational factors mediating loss. Implications for training and further research are outlined.",
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Making sense of bereavement in people with profound intellectual and multiple disabilities : carer perspectives. / Young, Hannah (Lead / Corresponding author); Hogg, James; Garrard, Brenda.

In: Journal of Applied Research in Intellectual Disabilities, Vol. 30, No. 6, 11.10.2017, p. 1035-1044.

Research output: Contribution to journalArticle

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AU - Young, Hannah

AU - Hogg, James

AU - Garrard, Brenda

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