Work-related stigma and disclosure: A daily challenge for people living with HIV

2.1.1 Types of studies

Included were qualitative and quantitative studies reporting original data on stigma and/or disclosure related to work among adults with HIV, conducted in a western country. Excluded were case reports, conference proceedings, books, dissertations, and letters to the editor. There were no restrictions on the language of publication.

2.1.2 Search methods

A literature search was performed in February 2016 in the databases Medline, Embase, Cochrane Library, Cinahl and Psychinfo using a combination of the following keywords (and their synonyms): employment, HIV, stigma, and disclosure. The complete search strategy can be found in Appendix 1. The search was limited to articles published after 1996 because of the introduction of HAART (Highly Active Antiretroviral Therapy) after that date.

The level of disclosure to employers/colleagues was reported in six studies and ranged from 22–50% [21–26]. In two studies a comparison was made between employers and colleagues [21]; the conclusion was that the level of disclosure to the employer is lower than that to colleagues (22–27% vs. 30–33%). One study showed that most participants only partly disclosed to a few people at their work [15].

3.2.2 Background characteristics associated with disclosure

In 6 studies background characteristics were reported as factors associated with disclosure, i.e. age, gender, ethnicity, disease-related factors, and characteristics of the workplace [21–26]; these are described below.

3.2.2.1 Age. One study reported the role of age in relation to disclosure and concluded that disclosure was not associated with age (p > 0.05) [22].

3.2.2.2 Gender. The role of gender was reported in two studies. One study found no difference [22], whereas the other concluded that women were less likely than men to disclose their HIV-positive status at the workplace [24].

3.2.2.3 Ethnicity. Three studies investigated ethnicity [23, 27]; all concluded that a black African ethnic background was associated with a lower level of disclosure.

3.2.2.4 Disease-related factors. Three studies reported on the role of time since diagnosis in relation to disclosure [21, 27]; two concluded that disease duration and number of years with HIV were associated with a higher level of disclosure [21, 27]. The odds ratio for disclosure to the employer increased with 43% for each additional year (p < 0.05) [21]. One study reported the influence of the way of transmission, concluding that being exposed to HIV because of heterosexual contact is negatively associated with disclosure [27].

3.2.2.5 Characteristics of the workplace. Two studies reported characteristics of the workplace [21, 22]. Both concluded that a higher position in the organization (e.g. managers) or non-manual work (e.g. professional or administrative) were positively associated with the level of disclosure. Furthermore, the degree to which HIV interfered with one’s ability to work was an important predictor of disclosure [21].

3.2.3 Reasons for disclosure

The reasons for disclosure were divided into four subgroups: personal, work-related, changing health status, and relation with colleagues or employer.

3.2.3.1 Personal reasons. Three articles described different personal reasons for disclosure, such as not wanting to live with a secret and honesty [22], personal acceptance of the HIV status [24], and the need to be accepted without prejudice.

3.2.3.2 Work-related reasons. The need for accommodation and support at work was mentioned in two studies [24, 28]. Furthermore, the need to provide an explanation for choices regarding work, and concerns about workability, were important reasons to disclose HIV status at work.

3.2.3.3 Changing health status Three studies reported that disclosure is sometimes necessary because of a change in health status, such as progression of the illness which may lead to absences [22, 29].

3.2.3.4 Relation with colleagues and employer. One study examined the level of trust in colleagues and employer and found this to be an important aspect in the decision to disclose [30].

3.2.4 Reasons for non-disclosure

The reasons for non-disclosure can be divided in two groups: need for privacy, and fear of stigma.

3.2.4.1 Need for privacy. Two studies reported that the main reason for concealment of the HIV status at work was the need for privacy [24, 28]. One study concluded that the perceived irrelevance of the HIV status for work was important for the decision not to disclose [15].

3.2.4.2 Fear of stigma. Five studies described that fear of stigma is one of the main reasons for non-disclosure [24, 28–30]. Also limited disclosure (to only one, or a few colleagues) can be an important strategy to avoid stigma [30].

3.2.5 Consequences of disclosure

After the decision to disclose or conceal their HIV status PLWH faced different consequences, varying from more accommodations at the workplace [26] to social isolation [24] or gossiping [15].

Three studies reported the level of perceived stigma at work; this ranged from 6–11% [25, 31]. One study reported that over two-thirds of PLWH reported that they were not allowed to go to a medical appointment during working hours without losing payment, which might be considered as stigma [26]. Another study reported that 24% of their participants indicated facing discrimination when applying for a job [31]. One study made an analysis of the complaints submitted to the Equal Employment Opportunity Commission about discrimination at work because of a chronic disease (including HIV): of all complaints filed by people with disabilities under the employment provisions of the Americans with Disabilities Act in the period 1992–2003, 7.3% concerned discrimination of PLWH. The most important reasons for complaints were resignation, a change of contract, harassment, or not being offered work accommodations [32]. In a Swiss study, no discrimination was found in legal texts or regulations. In contrast, stigmatization and practices of individual discrimination seems to be present based on interviews with informants.

3.3.2 Reported reasons for stigma

Several reasons for stigma and discrimination emerged, including fear of contamination, lack of awareness, homophobia [30], and the general perception that it is a person’s own fault that they are HIV positive [24]. In two other studies all employers indicated having difficulties when hiring PLWH, because of their concerns about possible biological and/or social contagion [34, 35].

3.3.3 Background characteristics related to stigma

Older people, men who have sex with men, drug users, and migrant women experienced significantly more discrimination [31]. A comparative study of PLWH in different geographical regions concluded that work-related stigma and discrimination appeared more often and was more severe in the Caribbean area than in the UK [30].

3.3.4 Fear of stigma

In four studies fear of stigma was described, but without a relation to (non) disclosure. Three studies noted that, for people currently not working, fear of being stigmatized by colleagues was a major barrier to obtaining employment [25, 36]. The other study described the perception of many participants, that employers are not HIV sensitive and that the Americans with Disabilities Act would not protect them from discrimination [37]. In another study, 98% of HIV nurses reported that fear of stigma was one of the main work-related issues of PLWH in their clinics [19].

3.3.5 Consequences of stigma

Possible consequences of stigma can include: the undermining of care and treatment (e.g. delaying medical appointments), limited opportunities for integration into society, and economic independence [30]. Furthermore, a consequence of stigma might be that PLWH refrain from certain types of jobs (not specified) [37].