Little is known about the views of the primary and secondary support offered to people with intellectual disabilities by formal carers around the time of a death of a loved one. This paper investigates the perceptions of the types of support provided by front-line staff to this population at the time of, and following, bereavement.
In total, 11 people with intellectual disabilities participated in semi-structured interviews. Practical supports (for example, involvement in events surrounding the death and access to the rites of passage) provided to these individuals were reported to be positive interventions, whereas the provision of emotional support (for example, formal and informal supportive counselling) by front-line staff were cited by the participants to be lacking. The use of alternative approaches (for example, reminiscence work, the creation of a life story book/family tree, art therapy and pictorial material) was also reported to be limited.
These findings highlight the need for education and training to provide front-line staff caring for people with intellectual disabilities with the insights, knowledge and skills necessary to practically and emotionally support this population who are facing the loss of a loved one. In addition, these training needs should be aligned with ongoing managerial and specialist bereavement supports, so that the specific needs of people with intellectual disabilities can be fully addressed.
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