VITAL. The Vitality of Disease - Quality of Life in the Making
One of the greatest challenges to health care systems around the world is growing populations of chronically ill individuals in need of lifelong treatment and regular interaction with hospitals, clinics and other healthcare professionals, not to mention the many forms of care and support, that family members and loved ones provide. Moreover, an increasing number of healthy but at risk individuals (e.g. due to a genetic mutation or particular biomarker) are being enrolled into surveillance programmes aimed at preventing disease from developing or catching that disease in its early stages at a time when treatment is more likely to succeed and might be less invasive and costly.
These shifts have been made possible in part due to advancements in treatments and biomedical technologies that have turned diseases that were once life-threatening into various forms of 'chronic living' for the persons and families who live with them. In response to these changes. healthcare programmes targeted at those who are chronically ill or at-risk of illness not only seek to prolong life but equally aim to make `chronic living´ as good as possible.
Against this backdrop, the VITAL researcher group has been exploring how ‘quality of life’ is assembled, mobilised, negotiated and practiced by patients, relatives and health care professionals in different parts of the world and in different medical settings:
- Surveillance life and inherited elevated risk of colorectal cancer in Denmark, Ayo Wahlberg and Laura Louise Heinsen
- Chronic kidney disease and a good life with dialysis in Austria, Anna Mann
- Living with dementia in South Korea, Jieun Lee
- Type 1 diabetes and online patients communities in Denmark, Natasja Kingod (in collaboration with Steno Diabetes)
- Paradoxes, (In)visibility, and Blurred Futures in Families Living with Congenital Heart Defects, Marie Kofoed Svensson (in collaboration with the Danish Heart Association)
This project has received funding from the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (grant agreement No ERC-2014-STG-639275).