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 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