Caregiver Perceptions of the Understanding of Death and Need for Bereavement Support in Adults with Intellectual Disabilities

Background: Care staff are an important source of information and support for people with intellectual disabilities following bereavement. The purpose of this study was to explore staff perceptions of service users' conceptualizations of death, reactions to bereavement, required levels of support and staff confidence in providing post-bereavement support. Method: Forty-two staff rated individuals with intellectual disabilities with whom they worked on a regular basis. Results: In general, staff believed that service users had a good concept of death, though staff tended to overestimate levels of understanding and possibly underestimate the potential for dysfunctional behaviour post-bereavement. Although staff expressed confidence in their ability to recognize grief symptoms, they were less confident in their ability to provide post-bereavement support. Conclusions: The overall picture was positive with good agreement between staff, though ensuring that staff consider the potential for psychopathology following bereavement is important in providing support. The implications for staff training and post-bereavement support are considered.