Place of death of people with Intellectual Disabilities: an exploratory study of death and dying within community disability service settings

Stuart Todd, Sharon Brandford, Eleri Worth, Julia Shearn, Jane Bernal

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Abstract

This paper describes an exploratory study of deaths of people with intellectual disabilities that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2 year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population based research in this area are addressed.
Original languageEnglish
JournalJournal of Intellectual Disabilities
Early online date12 Nov 2019
DOIs
Publication statusE-pub ahead of print - 12 Nov 2019

Keywords

  • intellectual disabilities
  • community-based services
  • mortality
  • place of death
  • end of life care

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