Troubling ruling discourses of health: Using institutional ethnography in community-based research

Abstract

This article responds to a recent call for detailed analyses of research processes that link the intellectual resources of the academy with communities and popular movements. Our discussion focuses on our experiences with the Making Care Visible (MCV) Project, a communitybased, qualitative research initiative conducted in Toronto, Canada, that explored the work people living with HIV/AIDS (PHAs) do to look after their health. This article focuses on the doing of the MCV Project and, in particular, on our use of the concept 'health work'. Our central aim is to demonstrate how the concept methodologically grounded the politics of our research efforts at various stages of our work. To this end, we describe how we used the concept in starting our research, selecting participants and carrying out interviews. Drawing on interview excerpts from Making Care Visible: Antiretroviral Combination Therapy and the Health Work of People Living with HIV/AIDS, we also describe a set of reading practices that helped produce an analysis of the social organization of health work and the ruling character of formal discourses of knowledge about treatment decision making. Overall, our discussion suggests how a particular form of critique is made possible by the conceptual coordination of research practice through the notion of health work.

Treatment Decision Making and Its Discontents

“…This focus, some contend, calls for rational deliberation over medically defined risks and outcomes, suggesting that decision making about illness can (or should) be abstracted from emotion, relationships, and daily life (Clark et al, 2004;Hudak et al, 2002;Lupton, 1997). Finally, in its emphasis on the patient or the patient-health professional dyad, the treatment decision-making discourse is said to minimize or obscure the social determinants of patients' choices, including the patient's socioeconomic status (Mykhalovskiy & McCoy, 2002) and the policy decisions that render certain options available and others not (Degner, 2002;Sherwin, 1998).…”

Conceptualizing the integration of HIV treatment and prevention: findings from a process evaluation of a community-based, national capacity-building intervention

“…It addresses research questions that are of concern to PLHIV and community organizations that serve them, formulates inquiry to explore everyday experiences, involves community members in the research process, and generates applied findings that can be used in community settings. [19][20][21] Process evaluation has emerged as a popular, if heterogeneous, form of research in health care. 22,23 Our approach is based on an important distinction between the evaluation of outcomes and the evaluation of organizational processes, first articulated in industrial research and later generalized to health care.…”

Community-based research decision-making: Experiences and factors affecting participation

“…Definitions and principles of CBR also clearly affirm that both community members and academics should participate in all aspects of the research (Cargo & Mercer 2008;Hall, Tremblay & Downing 2009;Ibáñez-Carrasco & Riaño-Alcalá 2011;Israel et al 1998Israel et al , 2003Mykhalovskiy & McCoy 2002;Williams et al 2005).…”