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

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.

Semi-structured interviews obtained responses from seven carers. Transcripts were examined using interpretative phenomenological analysis.

Two superordinate themes emerged: 'difficulty articulating the experience of loss' and 'making sense of bereavement through familiar patterns'.

Carers conceptualize bereavement primarily in cognitive terms, but also take account of relational factors mediating loss. Implications for training and further research are outlined.