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‘When your child dies you don't belong in that world any more’: experiences of mothers whose child with an intellectual disability has died
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Reilly, Deirdre E., Huws, Jaci C., Hastings, Richard P. and Vaughan, Frances L. (2008) ‘When your child dies you don't belong in that world any more’: experiences of mothers whose child with an intellectual disability has died. Journal of Applied Research in Intellectual Disabilities, Volume 21 (Number 6). pp. 546-560. doi:10.1111/j.1468-3148.2008.00427.x ISSN 1468-3148.
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Official URL: http://dx.doi.org/10.1111/j.1468-3148.2008.00427.x
Abstract
Background: Individuals with intellectual disability are at higher risk of premature death compared with individuals without intellectual disability, and therefore parents of people with intellectual disability are more likely to outlive their children. However, there has been relatively little research investigating the bereavement experiences of parents of deceased children with intellectual disability.
Method: Semi-structured interviews were used to explore the experiences of nine mothers whose child with intellectual disability had died. The transcripts were analysed qualitatively using Interpretative Phenomenological Analysis.
Results: Five themes emerged from the analysis: loss, benefit finding, coping, sources of support and medical relationships. An analysis of the accounts indicated similarities and differences between the experiences of the mothers. In particular, continuing in their caring role by working within the world of intellectual disability following the death of their child was important to all of the mothers. Support from similarly bereaved parents was the most useful source of support, although it was not always readily accessible.
Conclusions: Implications for theory and practice are described including suggestions that service providers should aim to maintain links with families after the death of their child, a parent-to-parent programme that enables parents to contact others in a similar situation might be beneficial, and further research into the functions of coping strategies and supports in loss would be worthwhile.
Item Type: | Journal Article | ||||
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Divisions: | Faculty of Social Sciences > Centre for Educational Development, Appraisal and Research (CEDAR) | ||||
Journal or Publication Title: | Journal of Applied Research in Intellectual Disabilities | ||||
Publisher: | Wiley-Blackwell Publishing Ltd. | ||||
ISSN: | 1468-3148 | ||||
Official Date: | November 2008 | ||||
Dates: |
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Volume: | Volume 21 | ||||
Number: | Number 6 | ||||
Page Range: | pp. 546-560 | ||||
DOI: | 10.1111/j.1468-3148.2008.00427.x | ||||
Status: | Peer Reviewed | ||||
Publication Status: | Published | ||||
Access rights to Published version: | Restricted or Subscription Access |
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