Palliative and End-of-Life Care, People with Intellectual & Developmental Disabilities (IDD) & Covid-19 (PEPIC19)
The Reference Group on Intellectual Disability is currently analysing the responses to an international survey about the care and support given to people with Intellectual Disabilities at the end of their lives, both before and during the Covid-19 pandemic.
About the survey
People with IDD have worse health outcomes than the rest of the population, and face major barriers in accessing healthcare. Across the world, there are concerns that they do not get the right care and support (including palliative care) when they approach the end of life, and when they are dying. There are also concerns that these problems have become even bigger during the Covid-19 pandemic. However, we know very little about the nature of the problems, or how widespread they are. We also don’t know what helps to get it right. Through the survey we collected the views and experiences of over 500 people about:
- 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?
Getting answers from many people in many different countries 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.
The PEPIC19 Survey Project Team
This is a collaboration between members of the EAPC Reference Group on Intellectual Disability, and members of IASSIDD (International Association of the Scientific Study of Intellectual and Developmental Disabilities). The team consists of:
- Prof Irene Tuffrey-Wijne (Kingston University & St George’s University of London, UK) (PROJECT LEAD)
- 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)
About the Reference Group on Intellectual Disability
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.
Aims & Objectives
- 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)
- Promoting the White Paper, including assessment of its influence on policy and practice
- Sharing expertise and resources across Europe
- Developing collaborative projects
Prof Rachel Forrester-Jones
David Oliver (UK)
Sue Read (UK)
Marieke Groot (Netherlands)
Leopold Curfs (Netherlands)
Britt-Evy Westergård (Norway)
Danila Valenti (Italy) – EAPC Board link
- 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.
- 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
- 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.
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