An exploration of the support received by people with intellectual disabilities who have been bereaved

Abstract

Little is known about the views of the primary and secondary support offered to people with intellectual disabilities by formal carers around the time of a death of a loved one. This paper investigates the perceptions of the types of support provided by front-line staff to this population at the time of, and following, bereavement.In total, 11 people with intellectual disabilities participated in semi-structured interviews. Practical supports (for example, involvement in events surrounding the death and access to the rites of passage) provided to these individuals were reported to be positive interventions, whereas the provision of emotional support (for example, formal and informal supportive counselling) by front-line staff were cited by the participants to be lacking. The use of alternative approaches (for example, reminiscence work, the creation of a life story book/family tree, art therapy and pictorial material) was also reported to be limited.These findings highlight the need for education and training to provide front-line staff caring for people with intellectual disabilities with the insights, knowledge and skills necessary to practically and emotionally support this population who are facing the loss of a loved one. In addition, these training needs should be aligned with ongoing managerial and specialist bereavement supports, so that the specific needs of people with intellectual disabilities can be fully addressed.

The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis

“…Although research exists which directly explores PWIDs’ experiences of being supported with issues of death, dying and bereavement (e.g. Forrester‐Jones, ; Gilrane‐McGarry & Taggart, ; McEvoy et al., ; McRitchie et al., ), this is still somewhat limited, perhaps due to the perceived difficulties of involving PWID in research (see Kiernan, ; Rodgers, ). However, Tuffrey‐Wijne and colleagues (e.g.…”

“…Staff in intellectual disability services should be well placed to recognize and support issues of bereavement (Dodd & Guerin, ; Gilrane‐McGarry & Taggart, ; Wiese, Stancliffe, Dew, Balandin, & Howarth, ) and PWID's own mortality (Wiese et al., ). However, to consider the most appropriate way for staff to provide such support, it is necessary to gain a better understanding of their experiences in supporting death, dying and bereavement in intellectual disability settings.…”

Research on embedded counselling: An emerging topic of potential importance for the future of counselling psychology

“…These studies have consistently found that even clients who were vulnerable or limited by communication difficulties have been able to reflect constructively on the emotional support that they have received. For instance, in a study by Gilrane-McGarry and Taggart (2007), that explored the experiences of people with intellectual difficulties who had suffered bereavement, participants were able to differentiate between helpful and unhelpful practices, and to comment on the absence of support from some workers.…”

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

“…PWID also report that they find inclusion in rituals helpful (Gilrane-McGarry & Taggart, 2007) and supported involvement has been shown to reduce both repetitive questions about the whereabouts of the deceased, and the frequency and intensity of challenging behaviour (Sheldon, 1998). Others have found that, if managed poorly, ritual involvement can result in more problematic grief, thought to be due to insufficient preparation beforehand or explanation and communication following (Dodd et al, 2008).…”