Date of Completion
HIV, Responsibility for Health, Chronicity, Conceptualization of HIV
Pamela Erickson, Dr.PH, PhD
Merrill Singer, PhD
Barbara Grace Sullivan, PhD
Field of Study
Doctor of Philosophy
HIV Infection: Solitary Work, Silent Suffering
Beliefs about Responsibility for Health
and the Ability to Impact Disease Progression
Cynthia Frank, PhD
University of Connecticut 2014
In contemporary Western society, health has become a personal and moral responsibility. People are blamed for their unhealthy or risky behavior and for acquiring certain diseases according to socially and culturally constructed norms. HIV is an infectious disease that is imbued with moral overtones and stigma, often multidimensional, creating an illness in which responsibility (for acquisition, transmission, and viral suppression) is an overarching theme. Thus, it represents a unique vehicle for exploring belief systems related to responsibility for health.
For those with access to medical care and treatment, opportunities exist to slow its progression and improve prognosis. This requires strict adherence to medication regimens, avoiding risky behavior that could lead to reinfection, and engaging in health-enhancing behaviors. Yet these behaviors and choices are mediated by beliefs about the virus and disease causation, the illness experience, treatment, and the associated stigma experienced by many people with HIV infection. For most, this is solitary work; they do not have, or choose not to utilize, their social networks. The stigma, social isolation, often co-morbid mental illness, and fear of disclosure surrounding HIV cause significant suffering that affects and constrains everyday lives, opportunities, and social relationships. Biomedicine has focused on curing the physical disease, but the social disease and suffering persist.
To address these issues, I utilized a mixed-methods approach to research the meaning-centered understandings and the contemporary lived experience of HIV infection among U.S. Veterans that encompasses their belief systems about responsibility for both disease management and health optimization, and their agency with respect to managing HIV now that treatment is available. I explored how the relabeling and reconstruction of HIV infection from “acute’ disease to “chronic” affects how people understand and experience their illness and their responsibility for health and disease management.
I suggest that these insights into the lived experience of HIV infection can inform biomedicine and society about the need to take a new direction in treating people with HIV infection from one that treats just the physical body to one that reduces the multiple physical, psychological, and social suffering and restores dignity to the person who is ill.
Frank, Cynthia A., "HIV Infection: Solitary Work, Silent Suffering Beliefs about Responsibility for Health and the Ability to Impact Disease Progression" (2014). Doctoral Dissertations. 338.