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Palliative Care for People with Intellectual Disabilities in Europe

Ausgangslage und Ziele

Due to the increasing longevity over the last decades people with intellectual disabilities (ID) are likely to die over a prolonged period of time because incurable, chronic illnesses occur more frequently in old age. Therefore there is a growing need for high quality Hospice and Palliative Care for people with ID.

The exploratory workshop brings together academics and professionals from a range of countries in Europe to discuss and debate practical research issues. The aim is to monitor dying and data on death, processes and quality of end-of-life care for people with ID. This will advance research into dying, death and the quality of Hospice and Palliative Care for people with intellectual disabilities.


The participants received specific questions prior to this event which were addressed in the workshops:

  • How do we collect dying and death data about people with intellectual disabilities? Which data is available? What are the problems concerning methodological, practical and ethical issues?
  • Which definitions and benchmarks do we have that will support internationally comparable data relating to death, dying and quality of Hospice and Palliative Care for people with ID to be collected? Which definitions and benchmarks are needed?
  • What will be the framework for a European research project on Hospice and Palliative Care for people with ID?

Methodisches Vorgehen

The workshop was held over two days in February 2015 at the University of Applied Sciences of Special Needs Education in Zürich, Switzerland. The first day involved round table presentations of the participants' research to date, followed by discussions around the gaps in knowledge and the methodological, practical and ethical issues on collecting data around death, dying and palliative care for people with intellectual disabilities. The second day focused on the identification of research priorities using Nominal Group Technique methodology.


The exploratory workshop was successful:

An agenda to develop end of life care research within Europe was formulated. 40 research priorities were proposed by twelve participants. They were collapsed into eleven research themes. Three of these emerged as major research themes, covering nine, eight and seven of the proposed research priorities respectively. The other eight themes each covered one, two or three of the proposed research priorities. The Major Research priorities are:

  • Investigating issues around end of life decision making
  • Mapping the scale and scope of the issue
  • Investigating the quality of PC for people with ID

The European Research Group of Palliative Care for People with ID (ERG-PC-ID) was initiated.


  • Tuffrey-Wijne, I., Wicki, M., Heslop, P., McCarron, M., Todd, S., Oliver, D., Ahlström, G., Schäper, S., Hynes, G., O’Farrell, J., Adler, J., Riese, F. & Curfs, L. (2016). Establishing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using Nominal Group Technique. BMC Palliative Care. BMC series – open, inclusive and trusted. DOI: 10.1186/s12904-016-0108-5. Available Online.
  • Wicki, M.T. (2016). Im Grossen und Ganzen zufrieden. Medizinische und psychiatrische Versorgung in den Wohnheimen der Behindertenhilfe. Vierteljahresschrift für Heilpädagogik und ihre Nachbargebiete (VHN) 3, 236-243.
  • Palliative Care for People with ID in Europe. Poster at the 14th World Congress of the European Association for Palliative Care in Copenhagen, Denmark on 9 May 2015.




Prof. Dr. phil.  Wicki


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