Grief in the Shadows: Exploring Loss and Bereavement in People With Developmental Disabilities

Abstract

A greater understanding of how developmentally disabled people cope with loss and bereavement is needed to improve assessment and intervention for these individuals. Misconceptions exist about how effectively developmentally disabled persons can articulate their perceptions and feelings about traumatic experiences, death, and the subsequent impact of the events that follow. The lived experience and expression of grief may differ for the developmentally disabled population. As a result, their reactions may not be adequately recognized, interpreted, or managed therapeutically, compounding their distress. Three case reports of developmentally disabled individuals who experienced a loss are presented, along with helpful guidelines regarding assessment and intervention.

Sense of coherence and mental health rehabilitation

“…Clements et al 18 found that a sense of despair, hopelessness and entrapment in a potentially chronic illness caused many of their participants to consider self-harm or suicide. One participant in their study stated that 'it is very hard to see a future with this illness' (p.789).…”

“…To understand an individual's recovery needs Clements et al 18 considered how the resource of social support was weakened in their participants. They reported that their participants, who had a variety of mental health issues with the common factor of a developmental disability, often disengaged from their existing social contacts because of a loss of self-confidence, the effect of paranoia destroying their trust in others and/or the fear of bringing embarrassment on themselves.…”

Setting up and running a loss and bereavement support group for adults with learning disabilities

“…Consequently, the distress an individual with learning disabilities may feel is often unrecognised. Some may not grieve immediately or in the way that may be expected, (Clements et al. 2004) which often means their grief can be unrecognised by others.…”

How Adults With an Intellectual Disability Experience Bereavement and Grief: A Qualitative Exploration

“…Limited research exists about the experiences of bereavement and grief in people with an intellectual disability (PWID), perhaps reflecting a tendency to shield this group from the realities of death (Clements, Focht-New, & Faulkner 2004). Models of grief developed in relation to the general population have moved from stage models, consisting of various predictable phases associated with tasks of grieving (e.g.…”