About the project
VITAL is a five-year (2015-2020) project funded by the European Research Council. It comprises four complementary ethnographic studies each of which zeroes in on specific situations where the improvement of morbid living is at stake. The goal of the project is to generate insights into how ‘quality of life’ is assembled, mobilised, negotiated and practiced. An important component of the VITAL project is also to develop a form of ‘assemblage ethnography’ that will allow us to follow ‘quality of life’ around as it circulates in media, policy, doctor’s consultations, patient training sessions, clinical trials, patient associations and homes. The four VITAL ethnographies follow a life-course research design:
Surveillance – living well with hereditary risk of colorectal cancer
Prof. Ayo Wahlberg and Laura Louise Heinsen (research assistant)
Rapid developments within the fields of medical genetics, biomarker research and population screening have led to the identification of increasing numbers of otherwise healthy ‘at risk’ individuals. This means that more people than ever before are participating in lifelong surveillance programmes because of an identified high risk for developing a serious disease – from cancer to heart disease and diabetes. Today, in the field of hereditary colorectal cancer in Denmark alone, more than 40,000 identified healthy individuals with an increased risk of cancer, are enrolled in a surveillance program, and the number is still growing. What this group of healthy individuals has in common is lifelong regular interaction with a healthcare system that has traditionally been geared towards treating the acutely and chronically ill. Indeed, so much so that we may now speak of a parallel group of healthy ‘at risk’ persons enrolled in secondary prevention programmes within hospital settings.
Participation in colorectal cancer surveillance programmes has been shown to reduce the risk of morbidity and mortality by up to 60%, hence the healthcare system strives to ensure lifelong adherence among high risk individuals. This study focuses on Danish families with an inherited elevated risk of colorectal cancer and how a life under medical surveillance is seen to affect quality of life and how initiatives are being developed which are aimed at supporting those living with an inherited elevated risk of colorectal cancer at critical moments in their lives.
Learning to live with disease: The case of Chronic Kidney Disease in Austria
Dr. Anna Mann
Herr P., who is in his 60s and lives in Vienna, likes Nature. He has recently signed up for a four-year course to become a hunting dog judge. Not only will the exam will be challenging. Combining the training with dialysis, which takes over Herr P.’s failing kidney functions three times a week for four hours in the hospital nearby, will be so as well. How will he do this?
This project investigates through participant observations and interviews in two regions in Austria how people who have been diagnosed with Chronic Kidney Disease and their significant others learn to live as well as possible with disease; and how nurses, medical professionals, and clown doctors provide health care services that allow their patients to live a life with as much ‘quality’ as possible.
Through cases such as Herr P., the project will shed light on how Quality of Life is enacted, crafted and performed in mundane practices of care and contributes to ongoing discussions about care and patient knowledge, the relation between knowledge and values, and interventions in biomedicine and social science.
Dr. Arseli Dokumaci
Within the second half of the twentieth century, an unusual kind of measurement emerged: the measurement of daily living with chronic disease. Especially after the 70’s, this kind of measurement has diversified into a series of scales, indices and questionnaires, which quantified the subjective experiences of chronic illness; the way chronically ill patients practiced their activities of daily living; their levels of pain, fatigue, and depression; their physical, social and psychological functioning, and broader health-related quality of life (HRQoL). Despite the growing significance of what is now called patient-reported outcomes measurement (PROs) both in clinical trials, healthcare delivery, resource allocation and policy-making decisions, there has not yet been a sustained examination of QoL measurement from a social studies of medicine perspective.
“Standardised subjects” seeks to address this paucity, and offer an ethnographic examination of the way PROs are being developed in multi-sited and multi-disciplinary settings, and the way they are being mobilized in clinical trials as outcomes measures. In examining the making-of, and utilization of QoL measurements in situated everyday settings, this project seeks to explore how the concept of QoL is being made, and how daily living with chronic disease is rendered measureable and is being measured in medicine.
Living Well with Dementia in the Community?: How “Quality of Life” Matters in the Nation-wide Dementia Management Program in Korea
Dr. Jieun Lee
South Korea is facing an unparalleled pace of aging of its population, and increasing number of people with dementia. It has raised concerns about the quality of life of people with dementia and their caregivers as well as the burdens of dementia to the society as a whole. Recently, the Ministry of Health and Welfare of Korea has launched the Third National Dementia Plan with a subheading, “living well with dementia in the community”. This newly implemented goal for the national dementia management plan draws attention to the qualities of life of people with dementia and their caregivers (living well) as well as to the potential for transforming the communities in a way that they can afford people with dementia. What does it mean for people with dementia to “live well in the community”? How has this new goal emerged in relation to the medical, politico-economic, and socio-cultural concerns about the welfare of the elderly? How can this goal be achieved? What kinds of knowledge and sociality would emerge in this process? How will this new policy orientation and practices change the ways in which people—not only patients and their caregivers, but many others who live around them—view and experience dementia, and (potentially) the old age in general?
“Living Well with Dementia in Aging Korea?” investigates how (1) various actors who are involved in this project strive to enhance “quality of life” of people with dementia and their caregivers, (2) how different ideas of “living well” are pronounced and negotiated in the process, and (3) what kinds of new relations emerge surrounding the national dementia management program. Rather than assuming that there is an obvious way to talk about the quality of life, this project works with the premise that “quality of life” could mean different things to different people depending on the circumstances of daily living, people’s view of life, and perceptions of dementia, the old age, and time. It will elucidate the diverse practices, processes, and relations that emerge in people’s efforts to enhance “quality of life”, and the aspects of daily living that matter to people who live with dementia.
Online peer-support communities for persons with type 1 diabetes – an ethnographic study of processes and practices of knowledge production and social support in everyday life
Dr. Natasja Kingod
Online communities for persons with type 1 diabetes is increasing in Denmark as well as worldwide, and opens up a virtual space through which exchange of experience, social support and connections among peers are made possible. Previous studies have mainly looked at online support communities as fixed settings isolated from the embodied and contextual everyday life setting. Recent research, however, points to the fact that online and offline worlds are connected and can be felt and experienced as continuous spaces with the online space as a mental settlement within a physical embodied everyday life. In order to understand the benefits and limitations of online peer-support communities for persons with type 1 diabetes, it is essential to know more about how the virtual and the non-virtual worlds are interrelated in everyday life with type 1 diabetes. The overall objective of this project is to explore the processes and practices of knowledge production and social support in online peer-support communities for persons with type 1 diabetes and how these relates to everyday life.
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).