Tuffrey-Wijne, I, McLaughlin, D, Curfs, L, Dusart, A, Hoenger, C, McEnhill, L, Read, S, Ryan, K, Satgé, D, Straßer, B, Westergård, BE and Oliver, D (2015) 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. Palliat Med, 30 (5). pp. 446-455.

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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
Additional Information: This is the accepted author manuscript (AAM). The final published version (version of record) is available online via Sage at https://doi.org/10.1177/0269216315600993 Please refer to any applicable terms of use of the publisher.
Uncontrolled Keywords: palliative care, intellectual disabilities, consensus, health-care quality, access and evaluation, end of life
Subjects: R Medicine > R Medicine (General)
Divisions: Faculty of Medicine and Health Sciences > Primary Care Health Sciences
Related URLs:
Depositing User: Symplectic
Date Deposited: 27 Jan 2016 12:21
Last Modified: 12 Jun 2018 08:20
URI: https://eprints.keele.ac.uk/id/eprint/1419

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