Parental bereavement and the loss of a child with intellectual disabilities: a review of the literature

Abstract

Inequalities in health care and other risk factors mean that children with intellectual disabilities are more likely to predecease their parents. Research on the effects on family members when a child with intellectual disability dies is sparse. In the present review, the authors describe 5 studies of bereavement in intellectual disability and then turn to general parental bereavement research to inform the field of intellectual disability. Questions for future research and some implications for services and professionals are discussed. In particular, professionals should be aware of dissatisfaction with care pre-loss, disenfranchised grief, and post-loss support needs of family members.