• Stuart Todd
  • Eleri Worth
  • Julia Shearn
  • Jane Bernal
  • Katherine Hunt
  • Edwin Jones
Background:
Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths, and the implications for services have been less considered.

Method:
This paper forms part of a larger cross-sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES-SF were obtained from Intellectual Disability service providers for each death within their supported population over 18 months, 149 decedents in all.

Results:
Only 34.2% of deaths were anticipated, death was often sudden, or followed a short illness. Four dying trajectories were identified, categorised by length of illness, service use, care outcomes, symptom control, and cause of death.

Conclusions:
Recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying as well as better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed.
Iaith wreiddiolSaesneg
CyfnodolynJournal of Applied Research in Intellectual Disabilities
StatwsAnfonwyd - 30 Mai 2020

ID: 3902760