Breathing Uneasy: Citizenship and Subjectivity in Pediatric Asthma Management
- Author(s): Higashi, Robin Takeko
- Advisor(s): Kaufman, Sharon R
- et al.
This dissertation answers the question: Given the availability of inexpensive and effective medications and services that make asthma a controllable disease, why do so many children continue to suffer from asthma? This is a timely and compelling question given that asthma is the second leading chronic disease among children, and costs the U.S. upwards of $20 billion a year. In this ethnography, children (ages 7-17) and caregivers from some of the poorest African-American and Latino communities in San Francisco describe the constant, ongoing array of daily life challenges that makes effective asthma management a frustrating and sometimes unattainable goal. These barriers to care take many forms: social and economic inequalities that produce instability and health hazards in the home environment; fear and the durable impact of negative experiences with health care providers and insurance workers; gaps between health insurance eligibility, enrollment, and long-term coverage; and the ambiguous and conflicting roles and expectations of children and caregivers in health maintenance tasks. Participant narratives illustrate how families negotiate these barriers, why they may choose not to, and why they sometimes fail. The dissertation also describes how the State's imbalance of health care provisions for children and adults has produced a unique situation in which children have the opportunity to act as the conduits to health citizenship for uninsured family members. And it shows how medical practitioners who are cognizant of these challenges sometimes find themselves in an uncomfortable position in which they must reconcile their professional and moral obligations.
Although the barriers to asthma management may seem daunting, this dissertation argues that suffering from asthma can be mitigated by practitioners who communicate empathy informed by an appreciation of the impact of poverty, immigration, and bureaucracies of power; it can be reduced by policymakers who recognize patterns of discrimination and the impact of denying health care to certain population groups; and it can inform health care consumers and advocates that the context of individual experience often limits the conditions of possibility for achieving better control of asthma symptoms.