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Intellectual Disability

 

Aims & Objectives

  1. Building collaborative links with practitioners and researchers across Europe, including IASSIDD (International Association for the Scientific Study of Intellectual and Developmental Disabilities) and the PCPLD Network (Palliative Care for People with Learning Disabilities)
  2. Promoting the White Paper, including assessment of its influence on policy and practice
  3. Sharing expertise and resources across Europe
  4. Developing collaborative projects

 

Background

People with intellectual disabilities make up an estimated 1-3% of the population. They are increasingly living into old age, with an associated increase in the need for palliative care provision; however, many do not currently have equitable access to palliative care services. Whilst their palliative care needs may be no different from those of the general population, they often present with unique issues, challenges and circumstances that make it more difficult to meet those needs. Therefore, they need focused consideration. Meeting the growing palliative care needs of people with intellectual disabilities thus presents a major challenge across Europe.
This reference group follows on from the EAPC Taskforce on Intellectual Disabilities (2012-2015), which aimed to improve palliative and end of life care for people with intellectual disabilities by identifying examples of good and promising practice across Europe, and developing consensus guidelines and recommendations for core standards of care, research and education. We have achieved those aims and produced a White Paper (2015), which made several recommendations. These included the importance of ongoing international exchange of expertise, as well as further research. One of the aims of the Reference Group is to monitor and promote implementation of the White Paper across Europe, and to promote international research collaborations.

We are currently working on a European survey with the following aims:

  • To explore what happens to people with ID at the end of life across Europe
  • To explore the challenges for different European countries in meeting the 13 norms set out in the 2015 EAPC White Paper: Consensus norms for palliative care of people with intellectual disabilities in Europe

 

Milestones

  1. Make links with practitioners and researchers across Europe, and with members of IASSIDD; develop membership base (ongoing)
  2. Inventarisation of the use (in policy, practice and research) of White Paper/norms, across Europe; develop plan for enhancing the reach and use of the White Paper (ongoing)
  3. Develop and pilot a European survey to establish the main challenges in achieving the norms set out in the White Paper (May 2020)
  4. Final data collection and reporting of the first wave of data collection (May 2021)

 

Publications*

  • Tuffrey-Wijne I, McLaughlin D (2015) Consensus norms for palliative care of people with intellectual disabilities in Europe: EAPC White Paper. European Association of Palliative Care. view here
  • Tuffrey-Wijne I, McLaughlin D, Curfs L, Dusart A, Hoenger C, McEnhill L, Read S, Ryan K, Satgé D, Straβer B, Westergård B, 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 (EAPC). Palliative Medicine 30 (5), 446-455. doi:10.1177/0269216315600993 view here
  • Tuffrey-Wijne I, Curfs L (2016) 38: The challenges of delivering integrated palliative care to people with intellectual disabilities in Europe. Part of: Abstracts for the integrated palliative care symposium, Brussels, September 30 2016. Palliative Medicine 30 (9), S18-19
  • Tuffrey-Wijne I (2016) Palliative care for people with intellectual disabilities: the EAPC White Paper in a nutshell. European Journal of Palliative Care 23(1), 45-47. view here

     

    *Published articles are held under copyright by the journal and may be downloaded for single academic use only. Reproduction for any other purpose is not allowed.

Chair

 

Prof Irene Tuffrey-Wijne 

Nurse / Professor of Intellectual Disability and Palliative Care

Faculty of Health, Social Care and Education, Kingston University & St George's, University of London

To contact please click here

Prof Rachel Forrester-Jones

Professor of Social Inclusion

Department of Social & Policy Sciences, University of Bath

To contact please click here

 


Core-Group

David Oliver (UK)
Sue Read (UK)
Marieke Groot (Netherlands)
Leopold Curfs (Netherlands)
Britt-Evy Westergård (Norway)

Danila Valenti (Italy) - EAPC Board link