Accepted Paper:

Chronic illness and institutional care: navigating the low-income quota system in contemporary urban India  

Author:

Lesley Branagan (Leipzig University)

Paper short abstract:

When notions and practices of care differ radically across different spaces and scales that care-seekers must traverse and make intersect - family, national policy, the global medical market – care practices become non-linear responses to crises caused by shifting institutional and market priorities.

Paper long abstract:

In contemporary urban India, the responsibility for institutional health care is shifted by government onto the private sector, via schemes that require private hospitals to fulfill quotas to treat people on low incomes. When daily survival for chronic diabetes patients depends on ongoing access to dialysis machines housed in institutions, how do low-income families experience the quota system in order to access treatment to which they are entitled, but are often denied?

By highlighting the experience of one Delhi family's exhaustive search for sustainable ongoing dialysis treatment for their ailing mother, this paper investigates the debilitating effects on care-seekers when notions and practices of care differ radically across the different spaces and scales that they are required to traverse and to make intersect: local family care with its social support; national policy which formulates notions of entitlement to treatment; and the global medical market that frames aspirations yet subverts patient expectations about right to treatment by acting according to market concerns.

Care-seeking becomes redefined as a practice of maneuvering through ever-shifting frameworks of interpersonal and institutional relations, neoliberal forces and hidden agendas, where access depends on capacity to leverage social networks and political connections. Care practices become a non-linear set of responses to crises caused by shifting institutional and medical market priorities. The larger the scale of care sought, the conditions of mutuality decline, and the social, moral and physical responsibility for care is deflected back onto the family, whose lives are profoundly transformed in response to illness.

Panel P091
Cross-cutting care and care across cuts: dimensions of care in contexts of crisis and social change