Periodic Reporting for period 4 - VITAL (The Vitality of Disease - Quality of Life in the Making)
Reporting period: 2019-12-01 to 2021-04-30
Epidemiological reports from around the world suggest that more people than ever before are living with (especially chronic) diseases. As a consequence, sustained efforts to reduce morbidity and mortality rates have been joined by systematised efforts to improve the lives – the quality of life – of those living with disease in ways that are measurable and auditable. VITAL will focus on the making of ‘quality of life’. While social studies of medicine have of late been marked by a ‘bio-turn’, it is apparent that within contemporary medicine, life is envisaged as much more than cellular and molecular activity; it is also a social activity and a personal experience. Not only is life sustained, it is also lived. In recent decades, morbid living – living with disease – has come to be the object of novel forms of knowledge, expertise, measurement and management while also generating new
medical practices and attendant ways of relating to oneself. VITAL suggests a shift in attention from the ways in which the social sciences have previously studied morbid living and related issues of quality of life. Rather than continue longstanding efforts to understand how people cope with disease or to refine definitions and instruments for measuring the quality of life of the sick, in VITAL we will empirically study the co-production of ‘quality of life’ within healthcare through four ethnographically-grounded studies of how ‘quality of life’ is assembled, mobilised, negotiated and practiced in concrete medical settings. The four studies will focus on how knowledge about living with disease is assembled and mobilised, on the one hand, and how morbid living is negotiated and practiced on the other. The key outcomes of VITAL will be theoretical advancement of understandings of vitality in the 21st century beyond molecular
biology and methodological innovation to facilitate empirical study of co-production processes that involve social science knowledge and practice.
medical practices and attendant ways of relating to oneself. VITAL suggests a shift in attention from the ways in which the social sciences have previously studied morbid living and related issues of quality of life. Rather than continue longstanding efforts to understand how people cope with disease or to refine definitions and instruments for measuring the quality of life of the sick, in VITAL we will empirically study the co-production of ‘quality of life’ within healthcare through four ethnographically-grounded studies of how ‘quality of life’ is assembled, mobilised, negotiated and practiced in concrete medical settings. The four studies will focus on how knowledge about living with disease is assembled and mobilised, on the one hand, and how morbid living is negotiated and practiced on the other. The key outcomes of VITAL will be theoretical advancement of understandings of vitality in the 21st century beyond molecular
biology and methodological innovation to facilitate empirical study of co-production processes that involve social science knowledge and practice.
In the VITAL project, a team of ethnographers set out to study ‘quality of life’ on the ground as an object that is co‐produced, assembled, mobilised, demanded and practiced in concrete settings of medical practice by patients, carers, family members, doctors and nurses. We did so within five different kinds of medical conditions: type 1 diabetes, Lynch syndrome/cancer, congenital heart defects, chronic kidney disease and Alzheimer’s disease, and in four different countries: Denmark, South Korea, Austria and Canada. We have been interested in 1) the practices that shape the measurement of Quality of Life of those people living with disease, 2) the negotiations between patients, families and healthcare professionals that take place in everyday efforts to work towards a “good life” with a medical condition, 3) the ways in which people (are supported to) learn to live with their medical condition(s) and, 4) the ways in which people living with certain chronic conditions exchange advice and tips on how best to live with these conditions. As the COVID-19 pandemic upended the world in early 2020, we very quickly worked to include the ways in which COVID-19 impacted on the lives of those living with (multiple) chronic conditions into our ethnographic work.
One of our greatest achievements has been to develop the concept of “chronic living” which we define as “the manifold ways in which people attend to, experience and take care of themselves and their medical conditions often with the indispensable help of loved ones, in differing life conditions and with stratified access to (life-saving) medical treatment and care”. As people learn to live with their chronic conditions we found that: 1) People increasingly resort to online platforms and technological aides when learning to live with chronic conditions and as such can increasingly be described as “tinkering m-patients” as they attune to a life with their disease(s), 2) outpatient encounters have become the primary form that provision of healthcare for people living with chronic conditions takes as these encounters “punctuate” their lives, engendering “constant recalibrations and experiments” and perpetual “prognostic calibrations”; and finally 3) “vital affordances” are created in and through the experiencing of disability by those people who live with (multiple) chronic conditions closely related to the particularity of the ways in which people are disabled - the specificities of the diseases, pains, and discomforts that we live with. Our key conclusion is that improving chronic living for patients (and their families) with (multiple) medical conditions has become as important as treating the biomedical body when it comes to healthcare. As a consequence, the hospitals, clinics and related institutions that make up healthcare systems in different parts of the world must ensure that the expertise and knowledge arising out of qualitative health research on how it is to live with a chronic condition be integrated into daily practice through hiring practices and in the development of clinical guidelines and protocols. We have shown how knowledge of chronic living is as important as knowledge of biological life in healthcare.
One of our greatest achievements has been to develop the concept of “chronic living” which we define as “the manifold ways in which people attend to, experience and take care of themselves and their medical conditions often with the indispensable help of loved ones, in differing life conditions and with stratified access to (life-saving) medical treatment and care”. As people learn to live with their chronic conditions we found that: 1) People increasingly resort to online platforms and technological aides when learning to live with chronic conditions and as such can increasingly be described as “tinkering m-patients” as they attune to a life with their disease(s), 2) outpatient encounters have become the primary form that provision of healthcare for people living with chronic conditions takes as these encounters “punctuate” their lives, engendering “constant recalibrations and experiments” and perpetual “prognostic calibrations”; and finally 3) “vital affordances” are created in and through the experiencing of disability by those people who live with (multiple) chronic conditions closely related to the particularity of the ways in which people are disabled - the specificities of the diseases, pains, and discomforts that we live with. Our key conclusion is that improving chronic living for patients (and their families) with (multiple) medical conditions has become as important as treating the biomedical body when it comes to healthcare. As a consequence, the hospitals, clinics and related institutions that make up healthcare systems in different parts of the world must ensure that the expertise and knowledge arising out of qualitative health research on how it is to live with a chronic condition be integrated into daily practice through hiring practices and in the development of clinical guidelines and protocols. We have shown how knowledge of chronic living is as important as knowledge of biological life in healthcare.
We are currently writing up the bulk of our findings and we have contributed new ways of conceptualizing and thinking about one of the greatest challenges facing societies around the world, namely how to address the growing numbers of people who live with chronic conditions for years if not decades. The concept of chronic living has emerged as equally important when compared to the somatic body that bio-scientists and medical clinicians are experts in. The Vital project has demonstrated the worthlessness of hierarchising expertise in ways where qualitative research is inevitable at the bottom. Chronic living is a concept that is highly translatable and useful to mobilise and convince all those involved in healthcare of the importance of qualitative research.