The development of European consensus norms for palliative care of people with intellectual disabilities: an EAPC White Paper

Sue Read, Rachel Forrester-Jones, Irene Tuffrey-Wijne, D McLaughlin, L Curfs, A Dusart, C Hoenger, L McEnhill, K. Ryan, D Satge, B Strasser, J Cooke, B.E. Westergaard, David Oliver

Research output: Contribution to journalMeeting abstractpeer-review


Aim: To develop consensus norms for palliative care of people with intellectual disabiliteis (ID) in Europe.
Method: Following norms agreed by a steering group of 14 experts from nine countries Delphi methods were used to assess cross-country agreement via an electronic survey; incorporating invitations to provide additional comment to each norm. The norms were accepted if there was sufficient agreement among all respondents (80% or more).
Results: The draft norms consisted of 52 items in 13 categories including (for example): equity of access, communication, assessment of needs, symptom management. 80 usable survey responses were received from 17 European countries. There was strong consensus amont survey respondents, with none of the items scoring less than 86% agreement. The norms have received approval from teh European Association for Palliative Care board of directors.
Conclusions: The aspirational norms described in this White Paper serve as accepted guidelines for best practice across Europe. Further study is needed to assess the barriers and enablers to achieving these consensus norms throughout Europe.
Original languageEnglish
Pages (from-to)725-725
Number of pages1
JournalJournal of Intellectual Disability Research
Issue number7-8
Early online date22 Jul 2016
Publication statusPublished - 31 Jul 2016
EventInternational Association of the Scientific Study of Intellectual & Developmental Disabilities, World Congress, 15-19 Aug 2016, Melbourne, Australia - Melbourne, Australia
Duration: 15 Aug 201619 Aug 2016


  • consensus norms
  • palliative care
  • Europe

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