Making Sense of Bereavement in People with Profound Intellectual and Multiple Disabilities: Carer Perspectives

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 conceptualize bereavement in relation to this group. METHOD: Semi-structured interviews obtained responses from seven carers. Transcripts were examined using interpretative phenomenological analysis. RESULTS: Two superordinate themes emerged: 'difficulty articulating the experience of loss' and 'making sense of bereavement through familiar patterns'. CONCLUSIONS: Carers conceptualize bereavement primarily in cognitive terms, but also take account of relational factors mediating loss. Implications for training and further research are outlined.