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

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

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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.
    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

    Keywords

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

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