Disclosure of HIV Status in the Workplace: Considerations and Strategies
Fesko, Sheila L., Health and Social Work
Maintaining a role in the workplace despite significant health concerns can be important in meeting an individual's emotional and economic needs. This qualitative research study reviewed the workplace experiences and disclosure decisions of 18 HIV-positive individuals. The most frequently cited reasons for disclosing HIV status were to explain choices they were making as they interviewed for a job and concerns about their job performance and the need for accommodations. For individuals who disclosed their HIV status to selective members of the workplace or disclosed to no one, the primary reasons given were preference for privacy nature of the work environment, and fear of possible consequences. The practice, policy and research implications for social workers are also discussed.
The introduction of the three-drug "cocktail" -- zidovudine, lamivudine, and the protease inhibitor indinavir--has reduced the HIV viral load of many patients (Knox, 1997). HIV-positive individuals are living longer and maintaining healthy and productive lives (Bellenir & Dresser, 1995; McReynolds, 1998), which increasingly has implications for HIV-positive individuals in the workplace. AIDS service organizations (ASOs), which previously focused on concerns related to disability and death, now focus on employment issues. AIDS benefit counselors in San Francisco, for example, have reported a threefold increase in requests for assistance with employment (Richardson, 1997). Individuals who only a few years ago might have been told to "retire" and enjoy the remaining years of their lives now value the role that work plays in their lives (Caulfield, Carey, & Mason, 1994).
For HIV-positive individuals who experience improved health, returning to work or maintaining their current employment is critical (Goodman, 1997). Many HIV-positive individuals find that they need to adjust their work demands (for example, reduction in work schedule, time off for medical appointments, or reduction in physically demanding work) to accommodate their health status (Courage Center, 1994; Greenwald, 1997). To obtain the needed accommodations, individuals must disclose their HIV status to their employers. Caulfield et al. (1994) found that concern about disclosing HIV status at work created great stress for individuals and frequently caused them to leave their jobs rather than disclose their status. Because of limited research on employment issues for people who are HIV-positive, this exploratory study examined the disclosure decisions of 18 HIV-positive individuals who continued to work after their diagnosis.
Disclosure of HIV Status in Social and Personal Settings
Research on disclosure of HIV status has focused primarily on telling sexual partners or family members (Gard, 1990; Holt, et al., 1998; Mansergh, Marks, & Simoni, 1995; Marks, Richardson, & Maldonado, 1991). Studies have shown that individuals who have not disclosed their HIV status feel isolated, depressed, anxious, and alienated (Crandall & Coleman, 1992; VanDevanter, Thacker, Bass, & Arnold, 1999). Individuals who did not disclose to sexual partners demonstrated greater psychological effects and were described as showing signs of somatic anxiety, hostility, and phobic anxiety (Kalichman & Nachimson, 1999).
The progression of the illness and the manner in which an individual responds to the diagnosis influence decisions about disclosing their status to others. Holt and colleagues (1998) found that immediately postdiagnosis, individuals typically do not disclose and use avoidance and denial as mechanisms to respond to the diagnosis. Asymptomatic individuals who have begun to accept the diagnosis may disclose their HIV status as a coping mechanism to regain control over their lives and relieve the stress of not disclosing (Holt et al.). When an individual becomes symptomatic or develops AIDS, disclosure is necessary to get medical services and social support. …