The experiences of parents in supporting their son or daughter with intellectual disability to learn about dying and death

Pippa J. McMaugh, Michele Y. Wiese, Roger J. Stancliffe

Research output: Contribution to journalArticlepeer-review

7 Scopus citations

Abstract

Background People with intellectual disability have a limited understanding of dying and death. The role of parents in developing the understanding of their son or daughter with intellectual disability about these concepts is unclear. This study aimed to explore parental experiences when talking with their son or daughter with intellectual disability about dying and death. Method Four participants were interviewed about how they discussed dying and death with their son or daughter with intellectual disability. Thematic analysis was used to interpret the findings. Results Parents did more than talk to their son or daughter about death; they involved them in dying and death experiences. Parents’ motivations influenced the way they included their son or daughter in these experiences. Conclusions The parents played an important role in providing learning experiences for their son or daughter with intellectual disability about dying and death.

Original languageEnglish (US)
Pages (from-to)285-294
Number of pages10
JournalJournal of Intellectual and Developmental Disability
Volume42
Issue number3
DOIs
StatePublished - Jul 3 2017
Externally publishedYes

Bibliographical note

Funding Information:
This research was funded under the Australian Research Council Linkage Projects scheme [grant number LP130100300] and with the assistance of industry partner The Lorna Hodgkinson Sunshine Home. The views expressed are those of the authors and are not necessarily those of the Australian Research Council Linkage Projects scheme or the industry partner.

Publisher Copyright:
© 2016 Australasian Society for Intellectual Disability, Inc.

Keywords

  • death
  • dying
  • end of life
  • intellectual disability
  • parents
  • participation

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