iLIVE project: large international research project into end-of-life care
- Period: 2019 – 2023
- Status: completed
The University of Humanistic Studies is participating in a European project dedicated to developing knowledge about end-of-life care. The research is conducted by an international consortium of research teams from 10 different countries and is funded by the European Union.
Description
This study describes contemporary experiences of patients and their (informal) caregivers through a cohort study conducted in 10 (mainly European) countries. The researchers map out the concerns, expectations and preferences among patients in the palliative phase, with respect to their dying. The research includes the patient’s relatives. Two specific interventions are also evaluated: the first is an intervention regarding medication management, the second pertains to a volunteer service in a hospital setting. Several hospitals and hospices in the Rotterdam region are participating.
The project has a number of specific goals:
- To develop and evaluate an electronic tool to help caregivers optimise the medication management for patients in the final phase of life.
- To develop and evaluate an international volunteer (training) programme for patients in the final phase of life, in a hospital setting.
- To determine the cost-effectiveness of the two interventions above by a) clarifying the concerns, expectations and preferences of patients and their relatives, and b) by explaining variance resulting from differences in culture, gender, age and socio-cultural background.
- To determine a set of result variables plus methods for international benchmarking.
- To increase the awareness of death and dying among the wider community.
Researchers
The project is headed by Professor Agnes van der Heide of the Erasmus Medical Center. On behalf of the University of Humanistic Studies, Prof. Anne Goossensen (professor of Informal Care and Care Ethics) is involved in the implementation of the four-year project. Among other Dutch researchers involved in the project are Dr. Lia van Zuylen (Erasmus MC) and Dr. Eric Geijteman.
Partners
This project is being carried out by a consortium of 14 organisations:
- Erasmus University Medical Center, Rotterdam, Netherlands
- Liverpool University, UK
- University of Humanistic studies, Netherlands
- University Clinic of Cologne, Germany
- University of Lund, Sweden
- University Clinic of Golnik, Slovenia
- University of Bern, Switzerland
- Cudeca Hospice Foundation, Spain
- Haukeland University Hospital, Bergen, Norway
- Landspitali, University Hospital, Reykjavik, Island
- Medical University of Vienna, Austria
- Pallium Latin-American Civil Association Argentina
- Arohanui Hospice Service Trust, New Zealand
- St. Vincent’s Hospital, Australia
(Co-)funding
The project is funded by the European Union under the Horizon 2020 programme.
Also see
Website: www.iliveproject.eu
Contact
Prof. dr. Anne Goossensen, A.Goossensen@UvH.nl.