Uninsured Adults: Current Experiences and Environment in Health Access and Healthcare in One Urban Upstate New York Community

The purpose of this focused ethnography research was to explore the experiences of the uninsured, and those who provided them healthcare, during the time period leading up to the implementation of the Affordable Care Act (ACA). This research was conducted in an urban community, in a non-profit, independent agency that provided comprehensive healthcare to the uninsured. A fieldwork approach was utilized that included semi-structured interviews with patients and agency staff, researcher observations of activities within the agency and the larger healthcare community, and collection of relevant artifacts important to healthcare access and health insurance eligibility. Data analysis included inductive data coding, category development, and within and between-case comparisons to develop themes. Thematic topics included the emotional, socio-economic, and health-related impacts of being uninsured, as well as the challenges of caring for the uninsured. Conflicting realities were observed. For example, many were grateful for their stable health, despite having undertreated chronic illness. They believed their behavioral choices would protect them from health threats, yet knew this state was tentative and were wholly unprepared to manage looming health concerns. Guilt, shame, and embarrassment were often expressed about being uninsured, yet most were suspicious of healthcare reform. Some uninsured expressed both resentment and envy of those who possessed public health insurance. Other uninsured provided compelling narratives of how financial concerns drove their healthcare decision making, despite the severity of illness. Agency staff detailed their challenges of working with a vulnerable population within a confusing maze of programming that existed to provide services to the uninsured. The findings of this research are timely because great personal and political resistance to embracing and adhering to the ACA persists, which may result in many remaining uninsured. This research can guide practitioners because it contextualizes the experiences of the uninsured and those who care for them.