Silenced grief: living with the death of a child with intellectual disabilities

Background This paper examines the bereavement experiences of parents of people with intellectual disabilities (IDs). It is based upon an understanding that there exists little research-based understanding of those experiences or of the support needs of parents after the death of their child. Methods In-depth interviews were held with 13 parents on the deaths of their children with IDs. Results The data highlighted the deep sense of loss that these parents experience after the death of their child. The loss was intensely felt. They also show that their loss was a form of compounded loss. To begin with the scale and depth of loss is misrecognized. They also lose contact with a world that they had previously been heavily involved in. There was a sense that ID services and professionals withdrew from the family with too much haste. The data reveal that there exists no adequate supportive emotional community for these parents to express their grief. Conclusions It is argued that the experiences of these parents have much in common with understandings of disenfranchised grief. The implications of these findings for research and practice are briefly discussed.