Bereavement Interventions for Adults with Intellectual Disabilities: What Works?

Abstract

Examination of the theory base for bereavement and loss is currently just beginning for adults with intellectual disabilities (ID). Yet, as life spans increase for individuals with ID, these adults experience more and more loss and bereavement events. Practitioners, especially grief counselors, are finding it increasingly critical for them to understand best practice principles for working with bereaved adults with ID in their daily work. Practitioners also are asked to guide families and care providers regarding grief and death education. This article provides counselors and other professionals with a review of existing bereavement intervention research for adults with ID. Practice recommendations are made on three levels: informal support; formal intervention; and community education.

Direct care workers’ experiences of grief and needs for support

“…Although an important body of research continues to expand on people with I/DD's experience with death and other losses, and how staff can serve as supports (Brickell & Munir, ; Clute, ; Read, Nte, Corcoran, & Stephens, ; Tuffrey‐Winje, ; Wiese, Dew, Stancliffe, Howarth, & Baladin, ; Wiese, Stancliffe, Baladin, Howarth, & Dew, ; Wiese, Stancliffe, Dew, Baladin, & Howarth, ), only a fraction of this research has focused on staff's personal experience with grief and bereavement in the intellectual and developmental disability (I/DD) field (Handley & Hutchinson, ; MacDermott & Keenan, ; McEvoy et al., ; Ryan, Guerin, Dodd, & McEvoy, ). Staff often experience loss when people with I/DD they care for die.…”

An exploration of clinical psychology's response to parental bereavement in adults with intellectual disability

“…It may be considered why clinical psychology as a profession is thus active at each level of Read's () support model; although Read did not specify who should most appropriately function at these levels, the general population models which it closely parallels place psychologists only at the level of therapeutic intervention, despite the wide span of the profession according to the APA (). Indeed Clute () notes that the non‐clinical nature of grief may typically place it within the remits of frontline supporting staff to respond to and support. There may here be a wider impact of the uncertainty which emerged as an overarching theme among staff, and which may also be present in other networks such as the family.…”

“…Additionally, longitudinal investigations of the “natural” course of bereavement in persons with intellectual disability would facilitate recognition of what constitutes an adaptive versus clinically relevant pattern of grief in this population. Until such comprehensive studies can be carried out however, practice‐based evidence may prove somewhat informative (Clute, ); it may therefore be helpful for clinicians to consistently implement measures pre‐ and post‐intervention and to clearly document the intervention, so that outcome reports may be produced. A difficulty in doing this may be the lack of validated measures developed for grief in persons with intellectual disability; while the CGQ‐ID (Guerin et al., ) may be used for those with mild or moderate intellectual disability, additional research should also aim to develop a measure for those with higher levels of impairment.…”

Living Disconnected: Building a Grounded Theory View of Bereavement for Adults with Intellectual Disabilities

“…Practitioners, researchers, and policy makers must work together to explore, build, and fund grief and death education and support for persons with IDD in our families, agencies, and communities. The data discussing interventions for interrupting the cycle of disconnection have been discussed and can be accessed in Clute (2010).…”