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HIV infection affects the lives of hundreds of thousands of North Americans. The experience of those infected is one of enormous upheaval. An HIV diagnosis can disrupt both daily life and the ability to plan for the future. Central to this experience is the uncertainty of a disease with vague symptomatology, changing medical Management, and social stigma.
This qualitative study explores the experience and consequences of uncertainty in the lives of 10 people with HIV infection. In-depth focused interviews were conducted to explore uncertainty after HIV diagnosis.
Findings reveal that individuals living with HIV infection form a new perspective on life, which is maintained through five core experiences: surviving the HIV diagnosis, taking care, living in the present, seeking support, and appreciating the positive. Each core experience is comprised of a number of actions used by the individual to formulate and maintain the new perspective on life.
Key words: HIV infection, life perspective, uncertainty
Over the past 15 years, HIV infection has affected, and continues to have an impact on the lives of hundreds of thousands of North Americans (HIV/AIDS Surveillance Report, 1995). The experience of those infected with HIV is one of enormous upheaval in their daily lives, as well as disruption of long-term life plans. People infected with HIV face the uncertainty of living with a disease characterized by vague symptomatology, changing medical management, and varied responses of social contacts. There is growing recognition that the ability to manage the uncertainty associated with a chronic or life-threatening illness can be an important factor in the individual's psychological and physiological well-being (Bailey & Nielsen, 1993; Cohen, 1993; Redeker, 1992). Yet, there has been limited examination of the experience and consequences of uncertainty in people infected with HIV. The purpose of this study was to explore the experience of uncertainty in the context of the lives of people with HIV infection.
Review of the Literature
Uncertainty has been studied in a wide range of illnesses including cancer (Cohen, 1993; Kostbade-Hughes, 1993; Mishel & Braden, 1988; Wiener & Dodd, 1993), rheumatoid arthritis (Bailey & Nielsen, 1993), and cardio-vascular disease (Christman et al., 1988; Redeker, 1992; Webster & Christman, 1988). Those with chronic and life-threatening illness must, in some cases, learn to live with sustained uncertainty.
Studies have shown that HIV-infected individuals also experience uncertainty (Siegel & Krauss, 1991) as do their family caregivers (Brown & Powell-Cope, 1991). Much of this uncertainty is concerned with the unpredictable nature of this disease from the long asymptomatic period following infection to the often vague and confusing symptoms associated with opportunistic infections. Additionally, people with HIV face the uncertainly of when and why symptoms of the disease will develop.
Weitz (1989) explored uncertainty among a cohort of homosexual men in the late 1980s and found that many of these men suspected their HIV infection but had not been tested. This lack of confirmation of serostatus was a significant cause of uncertainty. Subsequent interviews with a subset of the original cohort indicated that after their HIV infection was confirmed, they had identified ways of coping with the uncertainty.
Brown and Powell-Cope (1991), investigating the feelings and experiences of 53 individuals who provided care to a family member with AIDS, found uncertainty to be a basic social and psychological problem for the care giver. These researchers identified "transitions through uncertainty" as a core category within their findings. Focusing directly on persons with HIV infection, Gaskins and Brown (1992) investigated psychosocial responses in 10 gay and bisexual men to testing HIV positive. Men in this qualitative study reported shock, anger, and fear of the future as their initial response to knowledge of HIV infection. A core theme identified in this study was "fighting to survive with HIV infection." Within this theme, supporting concepts were "taking care" and "restructuring life," which includes dealing with uncertainty.
Siegel and Krauss (1991) described the adaptive tasks of HIV- positive gay men. The maintenance of emotional equilibrium was a key task identified in this study. These men described having to deal with the possibility of a curtailed life span and the reactions of others to their illness. The potential impact of stigma on the lives of people with HIV also was documented in a Canadian study of 19 men and six women with HIV infection (Laryea & Gien, 1993). Respondents in this study reported that the uncertainty about their lives was experienced in tandem with intense fear of disclosure and rejection.
Although uncertainty has been reported to be an integral part of the experience of being diagnosed with HIV infection, there is a need to investigate further the consequences of such uncertainty. This qualitative study explored the experience and consequences of uncertainty in the lives of people with HIV infection. Two research questions guided the study: What is the experience of uncertainty in the context of HIV infection and, what are the consequences of this uncertainty?
A purposive theoretical sampling technique was used to recruit 10 participants for the study interviews. The participants were HIV-infected and received primary medical and nursing care at an urban community health center in Canada. Nine men and one woman were interviewed. Ages of the participants ranged from 27 to 50 years. Participants were asymptomatic and had never been diagnosed with …