Title: The Active Patient: Energy, Desire and Active Recoveries
Funder: Economic and Social Research Council

Abstract: SUMMARY The focus of this research project is the nature of human energies (motivation, stamina, activity, etc) in health and illness. The background for the project is a growing trend in healthcare policies to stress the importance of activity and energy in keeping healthy and taking responsibility for one's health - a programme which has links to many other common ideas in society such as the values of keeping physically active, economically active, and of being an 'active citizen' or member of the 'Big Society'. In particular, the research will focus on the experiences of people who have chronic health conditions such as chronic fatigue syndrome and depression which produce depletions or disruptions to a person's energy resources. The project will develop a critical understanding of 'active recoveries' with regard to these conditions. The goal of the research is to work with service-users and practitioners to develop new vocabularies for talking about energy-related health conditions and to facilitate a series of service-user-led workshops for individuals living with depletions and disturbances to their energy and activity. Throughout history, ideas about the healthy self as an active self have varied, yet in contemporary conceptualisations of self and society, such notions have acquired unprecedented currency: in the healthcare context, see for example, policies for 'active aging' and 'active recovery' or campaigns such as the 'Active Five a Day', as well as shifts in healthcare politics in which patients are re-conceptualised as active partners in doctor-patient relations, service planning and research. Both in professionals' and patients' descriptions of illness and recovery, two important aspects of such discourse are energy and desire (wanting to get better and working hard to do so). Yet such ways of thinking about patients also present paradoxes for some groups of people: how might active recoveries be imagined in conditions in which depletions or disturbances to energy or desire are among the forefront of illness experience? What are the paradoxes of needing to want to get better when lack of desire is the condition itself? Previous research conducted by the Principle Investigator for this project has shown such questions to not only be rich theoretical areas of analysis but important on-the-ground concerns for people living with energy-related health conditions. This project seeks to investigate patient and professional conceptualisations of activity, energy and desire and to place them in their wider context, particularly with regard to developments in biomedical understandings of motivation, recovery and embodiment but also critical accounts of the nature of human nature. The central research focus is on how energy and desire are conceptualised by patients and the relation between these conceptualisations and patients' experiences of recovery. The research design will develop new approaches to conducting research with service-user communities and new ways for universities and service-user communities to work together. Innovative research methods, which will be developed collaboratively during the project, will experiment with techniques involving the visual and performing arts, in conjunction with more traditional social science interviews to facilitate new ways for service-users to represent or express their energy. Artworks and performances from these workshops will be used to produce a short documentary film and a public art exhibition at the end of the project. A series of public lectures and arts-based events, as well as workshops with practitioners and policymakers will be linked to this exhibition. The goals are both to improve understanding of the lived energetics of illness and recovery but also to encourage critical thinking about what it means to expect an active outlook from our patients.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES)
Health categories: MENTAL HEALTH;DISPUTED AETIOLOGY AND OTHER