Looking within and reaching out: bereavement counselor perceptions of grieving adults with ID

The purpose of this qualitative study was to explore the grief and loss experience of adults with ID through the eyes of 18 hospice-affiliated bereavement counselors. The data included interviews with hospice affiliated counselors who had provided grief counseling to adults with ID. The interview data were analyzed using grounded theory. The participants voiced clearly that loss needs to be recognized and grief must be honored for all persons, including those with ID. The participating counselors described the long histories of unrecognized losses and the unintended consequences of protecting people with ID by avoiding informing them or including them in change, loss, and death scenarios. The interview data depicted individuals with ID being so "invisible" that they are often disregarded in times of crisis and loss. The findings from this study, along with existing published literature, point out a serious need for education and training for families and formal and informal caregivers as well as professionals. Palliative care and hospice workers have an obligation and opportunity to identify, support, and, if necessary, treat the grief of those with ID. The hope is that over time, there will be less need for end-of-life care providers to be the lone educators and supporters about death and grief for any individual.