The iLIVE Project launches a new website for citizen participation




The iLIVE Project, live well, die well, the international research project on best care for people with advanced and terminal illnesses, has launched its new website to mark International Volunteer Day on the 5th of December.

The ultimate goal of iLIVE is to develop tools and best practices that improve the well-being of patients and their families and help healthcare professionals to take better care of patients. This project is fully funded by the European Union and has been running since the beginning of 2019.

Cudeca Hospice Foundation is delighted to participate in this project as it is a great opportunity for the development of research projects and the exchange of experiences with the countries involved. We are participating in 3 of the studies of iLIVE: the cohort study, the volunteer study and the qualitative study, and we also lead the Communication, Dissemination and Public Engagement group of iLIVE.

One of the aims of iLIVE Project is to have an impact on how people cope with dying and death, integrating their views and expectations to create effective and compassionate interventions that ensure the best care of all people in their last days of life. Volunteers play a key role in these objectives, as they help generate a society in which death and dying is a recognized part of life.

It has therefore launched this new website to raise awareness of its work, and also to create a space for debate on how we deal with death and dying in today's society. The website, with a very interactive spirit, encourages visitors to share their ideas and experiences, to enable an increased involvement of the community in end of life care, in support of a good dying experience, diminishing the societal and individual silence that surrounds dying, death and bereavement.

Under the slogan "I want to decide", this new website includes several sections: a section for the direct participation of visitors with questions and surveys about their opinions regarding the end of life care; a detailed explanation of the main studies that are part of the iLIVE project, in which 14 Palliative Care Centres and Universities located in thirteen countries in Europe, America and Oceania participate; and a news item section and calendar of activities both in person and online for people to engage with. The link is iliveproject.eu/iwanttodecide

Only through people's participation can professionals improve their care: providing the right information at the right time, safeguarding the dignity of each person, and helping them to be prepared to die.

Volunteering Day To recognise the importance of the work of volunteers, the United Nations General Assembly in Resolution 40/212 in 1985 and, since then, governments, the United Nations system and civil society organisations have celebrated International Volunteer Day on 5th of December, which theme this year is: "volunteer now for our common future". The aim of the day is to promote the values of voluntary action and to recognise the work of millions of volunteers around the world who work within organisations.

The iLIVE project is joining in this recognition with the launch of its new website, where the different countries participating in the study will share their own local celebrations for volunteers.

Professor John Ellershaw of the University of Liverpool, who leads iLIVE's research line on volunteering, wanted to send on this day "a huge 'thank you' to all the volunteers working around the world". For Dr Ellershaw, volunteering is "an amazing thing to do, to contribute to society and to support friends, family and society in general. I think without volunteers the world would be a much sadder place".

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