Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care

Irene Tuffrey-Wijne, Dorry McLaughlin, Leopold Curfs, Anne Dusart, Catherine Hoenger, Linda McEnhill, Sue Read, Karen Ryan, Daniel Satgé, Benjamin Straßer, Britt-Evy Westergård, David Oliver

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs.Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe.Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version.Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks.Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted.Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.
Original languageEnglish
Pages (from-to)446-455
Number of pages10
JournalPalliative Medicine
Volume30
Issue number5
DOIs
Publication statusPublished - May 2016

Keywords

  • access and evaluation
  • consensus
  • end of life
  • health-care quality
  • intellectual disabilities
  • palliative care
  • END-OF-LIFE
  • SERVICES
  • CANCER
  • PROVISION
  • DISPARITIES
  • Palliative care
  • STAFF
  • HEALTH

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