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.
