Deep in the shadows of loss: An exploration of grief, mourning, and intellectual disability

This qualitative research project explores grief and mourning experiences of people labelled/with intellectual disabilities subsequent to the death of someone important in their lives. The primary research question was: in what ways do people labelled/with intellectual disabilities experience grief after the death of a significant person in their lives? The need for a project of this kind is grounded in the lack of research and social work practice literature related to better understanding grief, mourning, and support experiences after a death from the perspective of people labelled/with intellectual disabilities. The dual purpose of this research is to better understand (and help others understand) the complex experience of grief after a death for bereaved people labelled/with intellectual disabilities, and, from this understanding, develop ideas for how social workers (and other professionals and support people) can provide sensitive, timely, and meaningful grief support over the lengthy time where they may have a range of grief reactions. To achieve this dual purpose, the research methodology of interpretive description was used within a care ethics framework of engaging with ‘vulnerable’ populations. Individual interviews were conducted with people labelled/with intellectual disabilities (N=14) from different locations in Ontario. In addition, support people (N=4), and key informants (N=5) were also interviewed. The interviews were followed by thematic analysis of the data collected. Participants provided insights relevant to the research question and pre-existing literature on the topic that have implications for understanding the intersection of grief and disability, and for practice. The findings demonstrate that although many of the grief reactions experienced by the bereaved participants are similar to those of the neurotypical population there remain significant differences in a number of areas, such as limited choice, exclusion, significant loss histories and trauma, and gatekeepers monitoring grief expression, that have implications for practice and education. Notably, bereaved people labelled/with intellectual disabilities indicated that rather than always being only the recipients of bereavement support, they want to use their experiences to help others - their bereaved peers, family members, and paid staff. This project contributes valuable practice insights and points to the need for better education for social workers (and other professionals in developmental services) in the intersecting topics of thanatology and disability studies.\nAccessible Abstract:\n· 14 people labelled/with intellectual disabilities shared what it was like for them after someone important to them died.\n· They shared that they had many different feelings, thoughts, reactions in their bodies, and questions after the person died.\n· The people labelled/with intellectual disabilities said that it is important to have the choice of whether or not to go to a funeral or the cemetery. They do not want people to keep secrets from them. They want to hear the bad news and be supported when this news is shared.\n· Many shared that they had a lot of losses in their lives (living away from home, many staff that come and go, and people who died) and some had lots of trauma experiences too.\n· Bereaved people labelled/with intellectual disabilities told me that they want to help other bereaved people (family, friends, paid staff) because they have learned so much from their own experiences.

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