Academic journal article Health and Social Work

The Impact, Meaning, and Challenges of Work: Perspectives of Individuals with HIV/AIDS

Academic journal article Health and Social Work

The Impact, Meaning, and Challenges of Work: Perspectives of Individuals with HIV/AIDS

Article excerpt

As individuals with HIV/AIDS live longer and maintain healthy and productive lives (Bellenir & Dresser, 1995), professionals who work with individuals with HIV/AIDS must shift their approach from managing an immediate medical crisis to managing a chronic, long-term health issue (McReynolds, 1998). Individuals who only a few years ago might have been told to "retire" and enjoy the remaining years of their lives are reconsidering the valuable role of work in their lives (Caulfield, Carey, & Mason, 1994). For many individuals who have improved health, returning to work or maintaining their employment is now a critical consideration (Goodman, 1997).

In addition to contributing to financial well-being, work is important in maintaining self-esteem and social connections (Rushing, 1995), and these functions may be particularly important for an individual dealing with a life-threatening disease (Mason, Carey, Jaskulski, & Stukey, 1995). Individuals with HIV/AIDS report that maintaining their employment throughout their illness is important to their emotional well-being, dignity, and motivation (Timmons & Fesko, 1997).

Individuals with HIV/AIDS must consider several issues as they contemplate the role of work in their lives. Stresses include struggling with the societal response to the disease and the decision of revealing their status to others. As with other stigmatizing illnesses, individuals who have HIV/AIDS must decide whether "to display or not to display; to tell or not to tell; to let on or not to let on; to lie or not lie; and in each cases, to whom, how, when, and where" (Goffman, 1963). Disclosure is a double-edged sword: It creates the opportunity for social support, which can be critical in adjusting to the illness, but may cause additional stress as a result of stigma, discrimination, and the disruption of personal relationships (Fesko, 2001; Gard, 1990).

Choosing not to disclose HIV status can interfere with getting appropriate medical and personal support. Individuals may decide to disclose their status to their employer to obtain necessary accommodations. Many individuals with HIV/AIDS need to make changes to allow them to continue to work and maintain their health, whether that change is a reduced schedule, time off for medical appointments, or a reduction in physically demanding tasks (Courage Center, 1994). Although the Americans with Disabilities Act of 1990 (P.L. 101-336) identifies HIV as a protected disability (U.S. Department of Justice, 1992) and requires employers to provide workplace accommodations (Kaiser Family Foundation, 2000), many individuals with HIV/MDS are reluctant to disclose their status and ask for accommodations. Either individuals are not well informed of their rights, or they fear asserting them because of the stigma associated with their illness (Fesko, 2001).

The study discussed in this article examined employment-related needs and supports for people with HIV/AIDS. This study adds to the current body of literature by exploring challenges related to working and determining where assistance is needed. Whereas most of the discrimination literature is primarily anecdotal, our research gains the perspective of individuals with HIV/ AIDS. The study was intended to answer the following questions:

* What are the employment-related concerns of individuals with HIV/AIDS?

* What supports are they using or lacking to address these concerns?


Data Collection

A research proposal for this qualitative study was approved by an institutional review board. Four focus groups were held to obtain the perspectives of individuals with HIV/AIDS on their employment concerns and to identify the primary issues and concerns related to employment. Each focus group lasted approximately 90 minutes. The groups were arranged so that individuals who shared common experiences and similar backgrounds participated together. …

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