Conceptualising bereavement in profound and multiple learning disabilities

Abstract

Running head: CONCEPTUALISING LOSS IN PMLD 2 AbstractPurpose Bereavement and loss are key factors in poor emotional wellbeing among people with profound and multiple learning disabilities. However, little attention has been drawn to this in the grief and disability literature. This paper aimed to make sense of bereavement and loss in this group, with reference to theoretical contributions to the field and studies of grief reactions.Design/Methodology/Approach A systematic review revealed thirty-four relevant published works.These were analysed for relevant contributions, and then subjected to peer-review.

Evaluating the characteristics of the grieving process in people with intellectual disability

“…On the other hand, in relation to the level of intellectual disability, the results show significant differences in favour of people with mild intellectual disability, compared to those with moderate and severe–profound intellectual disability, with regard to understanding the concept of death and the likelihood of being informed (where relevant, in advance) of the death of a significant person, of participating in the funeral or of talking to others who have also suffered the loss. These results are confirmed by other studies (Dodd, McEvoy, et al., ; McEvoy et al., ; McEvoy, Treacy, & Quigley, ; Muñiz et al., ; Young, ), which note that differences in understanding can fluctuate along a continuum, from partial comprehension to full understanding depending on cognitive and adaptive abilities. Post‐bereavement reactions also appear to be different depending on the level of intellectual disability.…”

Making Sense of Bereavement in People with Profound Intellectual and Multiple Disabilities: Carer Perspectives

“…A considerable number of works in the field have, as their foundation, a variety of approaches to grief: cognitive approaches, attachment‐based perspectives and theories of grief (Young in press). This dialogue can be used to deliver the basis for training on bereavement issues in intellectual disabilities.…”

“…). A systematic review of the bereavement and intellectual disability literature reveals that this is the only published paper that explicitly attempts to conceptualize bereavement in this group (Young in press). Using a framework primarily grounded in cognitive theory (Piaget ), the authors rationalize overt behaviours (e.g.…”

Loss and profound intellectual disabilities: the significance of early separation responses

“…Some of the limitations of this approach have already been discussed elsewhere (Young, 2016b). More specifically, this discourse has neglected central issues of attachment and stress, and is insufficient in accounting for the apparent range and complexity of responses to separation among this group (for a review, see Young, 2016a). Second, the majority of interventionist research conducted with theoretical direction from attachment and stress regulation has concentrated mainly on levels up to severe LD (see Schuengel et al, 2013 for a review).…”

“…Discourse has perhaps overly relied on the relevance of cognition in understanding the experience and complications of grief in people with ID (Young, 2016a). More recently, attachment theory has gained considerable merit in providing a theoretical approach to bereavement and loss (Dodd and Blackman, 2014), and has been practiced to ameliorate separation anxiety in people with ID (Sterkenburg et al, 2008;Jonker et al, 2015).…”