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Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods

Tuffrey-Wijne, Irene, McLaughlin, Dorry, Curfs, Leopold, Dusart, Anne, Hoenger, Catherine, McEnhill, Linda, Read, Sue, Ryan, Karen, Satgé, Daniel, Strasser, Benjamin, and others. (2015) Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods. Palliative Medicine, 30 (5). pp. 446-455. ISSN 0269-2163. (doi:10.1177/0269216315600993) (KAR id:55741)

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.

Item Type: Article
DOI/Identification number: 10.1177/0269216315600993
Subjects: H Social Sciences
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Tizard
Depositing User: Jo Ruffels
Date Deposited: 01 Jun 2016 09:32 UTC
Last Modified: 09 Dec 2022 07:02 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/55741 (The current URI for this page, for reference purposes)

University of Kent Author Information

Oliver, David J..

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