Manifestations and ramifications
There are many ways in which HIV-related stigma manifests in health care settings. A study in Tanzania documented a wide range of discriminatory and stigmatizing practices, and categorized them broadly into neglect, differential treatment, denial of care, testing and disclosing HIV status without consent, and verbal abuse/gossip [
19]. Similarly, a study in Ethiopia found that common forms of stigma in health facilities were designating patients as HIV positive on charts or in wards, gossiping about patients' status, verbally harassing patients, avoiding and isolating HIV-positive patients, and referring patients for HIV testing without counselling [
17].
In Indian hospitals, stigma and discrimination manifested as health workers informing family members of a patient's HIV status without his or her consent, and doing the following only with HIV-positive patients: burning their bedding upon discharge, charging them for the cost of infection control supplies, and using gloves during all interactions, regardless of whether physical contact occurred [
20].
Stigma and discrimination in the health care setting and elsewhere contribute to keeping people, including health providers, from adopting HIV preventive behaviours and accessing needed care and treatment. Fear of being identified as someone infected with HIV increases the likelihood that people will avoid testing for HIV, disclosing their HIV status to health care providers and family members, or seeking treatment and care, thus compromising their health and wellbeing.
With its potentially devastating consequences on care-seeking behavior, stigma represents a major "cost" for both individuals and public health. Both experienced and perceived stigma and discrimination are associated with reduced utilization of prevention services, including programmes to prevent mother to child transmission [
21‐
25], HIV testing and counselling [
26‐
30], and accessing care and treatment [
31].
In addition, research has demonstrated that the experience or fear of stigma often results in postponing or rejecting care, seeking care far from home to protect confidentiality, and nonadherence to medication. For example, studies in Senegal and Indonesia documented that men who have sex with men and injecting drug users, respectively, often avoid or delay accessing HIV-related services, including treatment for other sexually transmittted diseases, for fear of public exposure and discrimination by health workers [
28,
32].
Likewise, reseachers in Botswana and Jamaica found that stigma leads many people to seek testing and treatment services late in the progression of their disease, often beyond the stage of optimal drug intervention [
30,
33]. To conceal use of antriretroviral medications, HIV-positive individuals in South Africa reported grinding drugs into powder and not taking medication in front of others, which can result in inconsistent dosing [
34].
As mentioned, health care providers themselves may be reluctant to access the same testing, care and treatment they provide to their patients due to fear of stigma in the workplace and in the communities they serve [
35]. A study in South Africa and Botswana found that health workers struggle with self-stigma regarding a potential HIV diagnosis, as well as fear of stigmatizing attitudes and behaviours from their colleagues, which contribute to a lack of uptake of HIV testing and early treatment, if needed [
36].
In Zambia, health workers report knowing peers who are hiding their HIV status, are afraid to talk about their situation to others, and are suffering in silence [
37]. One indication of health workers' fears around HIV testing is their interest in self testing. A national study of health providers in Kenya found that nearly three-quarters would be interested in testing themselves for HIV, if such an option existed. Interest was greatest among those who had never tested, among medical doctors, and among health providers from the province with the highest prevalence of HIV in the country. The main reasons given for their interest are that self testing eliminates a potential breach in confidentiality, and pre-empts stigma and suspicion from colleagues since they would not know that someone had tested for HIV [
38].
While health workers living with HIV may face the same kinds of stigma as their patients because of perceived improper or immoral behaviours, their self-blame and shame may be compounded by their relatively higher social and educational status in the community. As noted by one hospital manager in a Zambia study, "In the end it was us that were stigmatizing ourselves. I feel people that are more educated, like nurses, find it most difficult to discuss and disclose their status..." [
37].
Health providers interviewed in another study in Zambia report that medical personnel who become infected with HIV are commonly seen as failures in the community [
39]. Nurses in Thailand expressed concern that their professional status would not give them the benefit of the doubt from their colleagues regarding whether they acquired their infection occupationally or through sex or drugs. For them, women with HIV violate gender norms and thus are guilty of being promiscuous [
40]. This suggests that health providers fear a loss of status and moral integrity if their peers find out they are HIV positive.
Research conducted among general populations around the world has revealed three immediately actionable key causes of HIV-related stigma in the community setting: lack of awareness of what stigma looks like and why it is damaging; fear of casual contact stemming from incomplete knowledge about HIV transmission; and values linking people with HIV to improper or immoral behaviour [
2,
41‐
43].
Similarly among health care workers, research suggests that fear of casual contact and moral judgements contributes to stigma and discrimination directed at clients living with HIV. Studies in Nigeria, Mexico, Ethiopia and Tanzania [
2,
14,
44‐
48] have found high levels of fear of contagion among health workers, which is related to a lack of understanding of how HIV is and is not transmitted, and how to protect oneself in the workplace through universal precautions.
In India, a study of hospital workers found that those who expressed greater agreement with stigmatizing statements about people living with HIV and hospital discriminatory practices were more likely to have incorrect knowledge about HIV transmission [
20]. With regard to moral judgements, studies have demonstrated that the assumption that people with HIV have conducted themselves in some improper or immoral way contributes to health workers' negative attitudes toward HIV-positive people and permeates client-provider interactions. In Nigeria, results of a study among nurses and laboratory technicians showed that 35% felt that HIV-positive people deserved being infected as punishment for their "sexual misbehaviours" [
45]. Similarly in Mexico, three-quarters of health providers surveyed thought people with HIV bore responsibility for having HIV [
48].
The value of a supportive, stigma-free environment
There is increasing evidence of the value of supportive and de-stigmatizing HIV services in different HIV prevalence and socio-cultural settings.
In China, health care workers who provide medical and emotional support are viewed favourably by HIV-positive patients and as critical to their ability to stay healthy, especially in the light of family isolation due to intense HIV stigma [
49]. Cataldo (2008) describes new forms of citizenship and socio-political inclusion among low-income people living with HIV in Brazil, a country lauded for its policy of free universal access to antiretroviral therapy [
50]. He documents close and supportive relationships between health practitioners and their clients, and between the health system and community non-governmental organizations that offer meetings, workshops, legal advice and support groups. Through de-stigmatizing care and treatment services they receive from the health system and related services in the community, clients are encouraged to claim further rights to be involved in decision-making processes, to achieve greater social inclusion, and to challenge stigma in the workplace and within families.