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

Tuffrey-Wijne, Irene and McLaughlin, Dorry and Curfs, Leopold and Dusart, Anne and Hoenger, Catherine and McEnhill, Linda and Read, Sue and Ryan, Karen and Satgé, Daniel and Strasser, Benjamin and Westergard, Britt-Evy and Oliver, David J. (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:https://doi.org/10.1177/0269216315600993) (Full text available)

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
Subjects: H Social Sciences
Divisions: Faculties > Social Sciences > School of Social Policy Sociology and Social Research > Tizard
Depositing User: Jo Ruffels
Date Deposited: 01 Jun 2016 09:32 UTC
Last Modified: 02 Feb 2017 15:51 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/55741 (The current URI for this page, for reference purposes)
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