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

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

¹Faculty of Health, Social Care and Education, Kingston University and St George's University of London, London, UK
²Queen's University Belfast, Belfast, UK
³Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands
⁴Centre Régional d'Études, Dijon, France
⁵Service de la Santé Publique, Lausanne, Switzerland
⁶The Prince & Princess of Wales Hospice, Glasgow, UK
⁷Keele University, Keele, UK
⁸Mater Misericordiae University Hospital, Dublin, Republic of Ireland
⁹Oncodefi, Montpellier, France
¹⁰Caritas of the Diocese of Munich and Freising, Munich, Germany
¹¹Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway
¹²Tizard Centre, University of Kent, Canterbury, UK

Irene Tuffrey-Wijne, Faculty of Health, Social Care and Education, Kingston University and St George's University of London, 2nd Floor Grosvenor Wing, London SW17 0RE, UK.

Email: [email protected]

Palliative Medicine 30(5):p 446-455, May 2016. | DOI: 10.1177/0269216315600993

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.