University of Arizona doctoral student, Julie Armin, supervised by Dr. Mark A. Nichter, will undertake ethnographic research on the lived-experience of cancer treatment for uninsured patients who qualify for state-funded care. Because cancer is a disease dependent upon high-tech medical interventions, it offers a particularly rich locus for examining how the experience of health care is affected by ability to pay. As the United States improves access to cancer screenings through programs that offer free or reduced-cost exams, there is an accompanying need for treatment among low-income and uninsured individuals. This ethnographic study of patients, families, and health care providers will examine the experiences of these new "medical citizens," who make claims on various health care resources, including hospitals, medical experts, lay professionals, charities, and state programs.
The research will be conducted in Tucson, Arizona, a city less than an hour from the United States-Mexico border, with a population that often looks to Mexico for less expensive health care. The researcher will use a combination of ethnographic research methods, including in-depth interviews, structured observations, and participant-observation. The research goals are: 1) to document the experience of financial treatment policies from the individual, household, and health care provider perspectives; 2) to examine the clinical bureaucratic practices that invite or restrict access to health care; and 3) to explore the work done by individuals, families and providers who take responsibility for cancer care, with particular attention to gender.
The research is important because it will contribute to theories that seek to explain why social inequalities persist, even in equality-promoting democracies. The research also will help to illuminate how the work as well as the costs occasioned by serious illness are distributed. In addition, research findings may inform the public policy analyses that seek to determine how policy may both enable and constrain individuals, and possibly contribute to health disparities. Supporting this research also supports the education of a social scientist.
This ethnographic project investigated the barriers and enablers to treatment for uninsured and publicly insured women living with breast cancer in Southern Arizona. The researcher took a systems approach to understanding the social, political, and economic context of cancer care for medically marginalized women by documenting the experiences of patients and health care professionals. In-depth structured and semi-structured interviews, structured observations, and participant-observation with patients, their family members, and providers, as well as media analyses, provided insight into the predisposing, enabling, and service-related factors influencing care seeking and treatment provision among medically marginalized women with cancer. Partnerships with a variety of community resources and institutions enabled the researcher to document the following findings during this health services ethnography of cancer treatment disparity: Women living with cancer seek treatment in a complex and ever-changing policy environment that shapes their access and often confounds the professionals who assist them. National policies regarding breast cancer treatment provide therapeutic opportunities for many medically marginalized women, while they create gaps for others; for instance, a major barrier to timely and complete cancer treatment for uninsured women is citizenship status. Both patients and providers often have little understanding of public insurance benefits, including the specific services covered and the requirements for eligibility, which may create gaps in care and requires diligent study and follow-up on behalf of the patient. The changing policy environment is especially challenging for those health care workers, such as social workers, who often take on the institutional responsibility for helping to connect economically vulnerable patients with resources, on top of their other work tasks. The experience of professional caregivers often goes undocumented, yet it is an important aspect of the patient experience of care and is deserving of greater attention by health services researchers and health social scientists. Uninsured women living with cancer may benefit from longstanding "informal" institutional and professional networks, but to do so, they must pursue information, connections, and resources. Uninsured patients and their families who do not qualify for public insurance must maintain a level of engaged "health consumerism" that may not be as necessary for women who have public insurance. In collaboration with community health professionals who help them navigate community resources for treatment, uninsured women often actively pursue information and assistance in the hope that they will be connected with affordable or free treatment. Meanwhile, community health professionals do the difficult job of allocating care by examining patients' access to public and private benefits, working through longstanding personal and semi-formal relationships to secure reduced-cost or free therapy, and managing the emotions of patients and their families. An examination of how the "system" of care for the uninsured is presently being "worked" by experienced and caring clinicians and other health care workers can identify areas for patient service improvement and greater resource allocation. Data on practices "in the margins" may provide insights into how the experience of health care-seeking and provision can be improved for medically and economically vulnerable populations. This study took place as public interest in health care was rising due to reform efforts in the United States. It offers insights into the real world ramifications of existing health care policy and the way in which patients and practitioners navigate the health system in an effort to secure humane health care provision. Findings from this research have been shared at several national conferences and at an invited lecture for cancer scholars. The researcher will continue to disseminate findings to her local partners and through national venues. She is committed to continuing research into cancer disparities as health reform efforts unfold.
