• Stuart Todd
  • Eleri Worth
  • Julia Shearn
  • Jane Bernal
  • Katherine Hunt
  • Edwin Jones
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.

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.

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.

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