PEPIC19 Survey

International Survey of Palliative and End-of-Life Care, People with Intellectual & Developmental Disabilities (IDD) & Covid-19

CLICK HERE to take part in the survey

We are a team of researchers from 10 different countries. We want to know how we can make sure that people with intellectual and developmental disabilities (IDD)* get the best possible care when they reach the end of their lives.

Are you interested in this too? If so, please take part in our PEPIC19 Survey.
Anyone can do the survey, but it is particularly suitable for professionals in health or social care services, academics, researchers and educators. You can be in any country in the world.

Watch a 3 minute video:

Why this survey?

We hear stories of people with IDD who get good end of life care, at the right time, in the right place. But we also hear stories of people with IDD who don’t get the care they need at the end of life, or who die prematurely. We know (from other research) that this happens all too often.

We also know that the Covid-19 pandemic has made the situation even more difficult for people with IDD and their families, and for the professionals who support them.

We want to learn from your experiences, both the positive and the negative. We want to get responses from as many people as possible, all over the world. This will help to focus attention on the difficulties, and learn about good practice. We hope that this will help to address the problems – for example, through changes in policy or practice, or funding decisions, or further investigation.

Here are the questions we want answers to:

  • What helps people with IDD to get the care and support they need at the end of their life (both in general, and during the Covid-19 pandemic)?
  • What makes this difficult?

This is an online survey. There are tick-box questions, plus space for you to write about your experiences, if you wish. Depending on how much you write, it will take about 20 minutes to complete.

You don’t have to write in English – you can write in your own language. (We are working on translations for this survey, so if you’d like to wait for that, please ask us if your language is on our list!)
The survey is also available in Dutch, German and Norwegian.

Closing date: 15 March 2021.

For more information, contact:
Professor Irene Tuffrey-Wijne I.Tuffrey-Wijne@sgul.kingston.ac.uk
Dr Naomi D’Hollander Naomi.Dhollander@UGent.be

The Project Team:

  • Prof Irene Tuffrey-Wijne (Kingston University & St George’s University of London, UK)
  • Dr Naomi Dhollander (University of Ghent, Belgium)
  • Dr Britt-Evy Westergård (Oslo Metropolitan University, Norway)
  • Dr Carmen Karbasi (Complutense University of Madrid, Spain)
  • Prof David Oliver (University of Kent, UK)
  • Prof Huda Abu-Saad Huijer (American University of Beirut, Lebanon)
  • Dr Madeleen Uitdehaag (Saxion University of Applied Sciences, Netherlands)
  • Prof Michael Echteld (Avans University of Applied Sciences, Netherlands)
  • Dr Marieke Groot (Radboud University of Nijmegen, Netherlands)
  • Prof Mary McCarron (Trinity College Dublin, Ireland)
  • Prof Phillip McCallion (University at Albany, State University of New York, USA)
  • Prof Rachel Forrester-Jones (University of Bath, UK)
  • Prof Sabine Schaeper (Catholic University of Applied Sciences, Germany)
  • Dr Stuart Todd (University of South Wales, UK)
  • Dr Stuart Wark (University of New England, Australia)

This work comes out of the European Association for Palliative Care (EAPC) Reference Group for Intellectual Disability, chaired by Prof Tuffrey-Wijne.