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
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.
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.