The PEPIC19 survey: An international survey of end-of-life and palliative care of people with intellectual disabilities


Today, Irene Tuffrey-Wijne, Co-chair of the European Association for Palliative Care Reference Group on Intellectual Disability, encourages everyone involved in providing end-of-life and palliative care to complete this important survey. 

Professor Irene Tuffrey-Wijne.

How can we make sure that people with intellectual and developmental disabilities (IDD) get the best possible care when they reach the end of their lives, wherever they are, and whoever supports them?

That’s the question that we want answers to. We are a team of researchers from 10 different countries, part of the EAPC Reference Group Intellectual Disability. We have just developed and launched an international survey, which can be completed by professionals in health or social care services, academics, researchers and educators.

But what if I hardly ever see patients with IDD?

You may think: This survey is not for me. I don’t really know anything about people with IDD. In my work in palliative care, I hardly ever see patients who have IDD.

In fact, we want to hear from everyone involved in providing end-of-life and palliative care, even if their experience of people with IDD is limited. Why? Because IDD affects approximately two per cent of the population – so, if access to palliative care services were equal, that would amount to one in 50 of our patients.

If that doesn’t sound like your experience, then it will help us to hear about it. You may find that you’ll have to answer: “Don’t know” to most of our survey questions, but it will give us an idea of which countries are struggling to give people with IDD equal access to palliative care. So please do complete the survey.

If you do have experience, we are really keen to understand what helps staff to provide good palliative care to this population, and what makes it difficult. Our survey questions are based on 13 areas identified in the EAPC White Paper on Palliative Care for People with Intellectual Disabilities, published by our EAPC Taskforce in 2015. We want to know which of these areas are most difficult to do well, and what we can do to improve this. For example:

  • Recognising the need for palliative care.
  • Communication.
  • Assessing pain and other symptoms.
  • Involving family and other caregivers.
  • Shared end-of-life decision-making.
  • Bereavement support.

We want to learn from your experiences – please complete our survey

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. The pandemic has shone a light on existing inequalities and exacerbated some of them further – but there have also been opportunities and examples of good practice.

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.

So, we urge you to take part in our survey, and share the link with your colleagues. It will take about 15-30 minutes to complete. There are 13 tick-box questions, with space to write about your experiences or opinions. You don’t have to write in English – you can write in your own language. Translations into German, Norwegian, Spanish and Dutch will be available soon, and further translations may be added later.

The closing date is 30 November 2020. You can watch a three-minute video about the survey here  Click here to take part in the survey. And if you’d like more information, please contact Professor Irene Tuffrey-Wijne or Dr Naomi Dhollander.


Please look out in the coming weeks for more posts in the Palliative Care and Intellectual Disability series on the EAPC blog. If you’d like to contribute to the series, please email the editor.


This entry was posted in EAPC ACTIVITIES, EAPC Task Forces/Reference Groups, Intellectual disabilities, PSYCHO-SOCIAL ISSUES and tagged . Bookmark the permalink.

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