Reducing Stigma and Discrimination
- Community-based interventions (including media) that provide accurate information about HIV transmission can significantly reduce HIV stigma and discrimination.
- Training for providers, along with access to the means of universal precautions, can reduce provider discrimination against people with HIV/AIDS.
1. Community-based interventions (including media) that provide accurate information about HIV transmission can significantly reduce HIV stigma and discrimination.
A community-based intervention to increase HIV/AIDS knowledge and reduce HIV/AIDS stigma with surveys conducted of 32 people in implementation and 34 people control villages in Thailand found a substantial increase in both the HIV/AIDS knowledge score and the HIV/AIDS stigma score in the implementation village but very little change in the control village. Focus group discussions also found that increased knowledge reduced stigma.
A study and intervention in two communities in Vietnam found that project interventions led to a significant increase in awareness of stigma, reduction in fear of becoming infected with HIV through casual contact with HIV-positive people and stigma and intentions concerning stigmatizing behavior. Better, more complete knowledge of how HIV was not transmitted translated into a greater degree of acceptance of people living with HIV and their family members. Stigma was so strong in these communities that no one was open about their HIV-positive serostatus. The intervention consisted of a workshop with community leaders to sensitize leaders on the impact of stigma and to provide knowledge on HIV and to meet people living with HIV. Each community participated in a facilitated workshop to develop activities designed to reduce stigma in their communities. This included selecting influential people in each ward, who were then trained and personally delivered: distributing an HIV and stigma fact sheet to each household; follow-up meetings held by the trained community members; posters; drama; a program in primary schools that included participatory development of 8 ½ hour sessions delivered by trained teachers sessions for students and teacher; and support groups for people living with HIV. 35 focus group discussions and 97 in-depth interviews were conducted with people living with HIV, family members and community members. 700 in each community were sampled at prior to the intervention and at the end of the project, fourteen months later. Prior to the project, people living with HIV reported not accessing health services due to fear of disclosure of their serostatus. A dose-response effect was seen, that is, self-reported exposure to multiple activities led to lower stigma scores at endline. greater increases in stigma reduction. The intervention was most successful in increasing awareness of stigma and reducing fear-driven stigma. Some reductions were seen in socially-driven stigma (e.g. blame and shaming of people living with HIV), though these were less marked. However, the intervention was less effective in reducing blame toward HIV-positive people.
An intervention in 2002 to 2003 in Shanxi Province, China to reduce community apprehension about AIDS and subsequent discrimination against PLWA resulted in improved knowledge about HIV, improved attitudes and behavior towards PLWA. For example, before the intervention, 70% said PLWA should be segregated from the public, compared to 37% after the intervention. While knowledge about condom use improved, actual condom use increased only slightly. The study included an intervention and control area and collected focus group and in-depth interview data and pre- and post- intervention surveys. The intervention included an activity center for PLWA; training and BCC material; care and support; and free condoms.
Between 2004 and 2006, a project in Thailand that paired HIV-positive with an HIV-negative partner to receive loans to create a small business found that HIV-negative partners reported greater willingness to participate in activities with HIV-positive people. Within a few months, the percent of people involved in the project who said they would be comfortable visiting a house of an HIV-positive person increased from 20% to 90%. HIV-positive partners reported they no longer felt they had to accept discrimination. People living with HIV who participated in the project reported improvements in quality of life, as well as in their economic, social, physical and mental well-being between 2004 and 2006. In addition, 91% of the loans have been repaid on time. Both partners needed training in basic business skills. More than 62% of members were female. More than 42% of all participants paired two women and 39% were composed of one man and one woman. HIV-positive participants had the final decision on accepting their HIV-negative partner, providing those living with HIV more security and control. Disclosure of HIV was voluntary and not required for program participation (UNAIDS, 2007b; Viravaidya et al., 2008).
A study in Nigeria between 2003 and 2007 found a significant and positive trend between exposure to mass media on the levels of accepting attitudes towards people living with HIV and that exposure to mass media communications on HIV and AIDS issues were significantly related to reduced stigma and discrimination against people living with HIV/AIDS. Data was obtained from 31,692 respondents of the National HIV and AIDS and Reproductive Health Survey, a nationally representative sample of female aged 15 to 49 and males aged 15 to 64 years of age. Mass media exposure was measured based on viewership, listenership and frequency of being exposed to HIV/AIDS messages. The level of accepting attitudes towards people living with HIV/AIDS increased from 3.5% in 2003 to 9% in 2007. However, this also meant that those who still stigmatize people living with HIV decreased from 96.5% to 91% in 2007. Exposure to mass media on HIV was significantly related to reduced stigma and discrimination against people living with HIV/AIDS. Another analysis of the same data using a nationally representative sample of 4,685 females and 5,396 males ages 15 to 49 found that personal exposure to HIV messages through the media was correlated with increased accepting attitudes toward people living with HIV among both men and women. However, accepting attitudes were significantly more prevalent among men than among women. For women, communication exposure was correlated with higher levels of knowledge about HIV (Fakolade et al., 2010; Babalola et al., 2009).
A study with two separate cross-sectional surveys in Malawi, one at baseline in 2004 with 891 people and another follow-up survey in 2005, found that a national mass media campaign including radio diaries featuring the lives of a man and a woman living with HIV; radio programming educating youth about HIV; and community mobilization using trained community facilitators concerning HIV prevention found a significant positive association between program exposure and being less likely to show stigmatizing attitudes to people living with HIV, even after adjusting for potential demographic confounders. This, in turn, was associated with an uptake of HIV testing. “...Reduction in stigma, as an intervention goal, is important not only to promote the respectful treatment of people living with HIV, but also to promote uptake of HIV testing” (Berendes and Rimal, 2011: 224).
Focus group discussions with thirty people held after a performance in Ghana of a theatrical performance with HIV-positive and HIV-negative performers that dramatized issues concerning living with HIV, such as disclosure of serostatus, found that the performance challenged assumptions among audience members to understand that, as one focus group participant put it, “...What a normal fellow can do, a person with AIDS can equally do” (Boneh and Jaganath, 2011: 462). Another participant stated: “I was so happy because though some were positive and some were not, they all came together to act the play and related very well with one another. This means that we can also do things together with our own folks who are HIV-positive” (Boneh and Jaganath, 2011: 462).
2. Training for providers, along with access to the means of universal precautions, can reduce provider discrimination against people with HIV/AIDS. [See also Structuring Health Services to Meet Women’s Needs]
Training for service providers in county hospitals Yunnan, China in 2005-2006 resulted in a stronger belief in patient confidentiality (4 times higher), respecting patients’ rights for HIV testing (7.5 times higher) reduced negatives views of people living with HIV (2.2 times higher) and better knowledge and practice of universal precautions (2.6 times higher). 138 providers (doctors, nurses and lab technicians) were assigned to an intervention or control group and followed for six months. The intervention included interactive sessions of game playing based on equal medical treatment, role playing emphasizing the prevalence of discrimination in society and discussions of experiences with HIV care.
A study in Vietnam that provided training to 975 hospital workers who received a one and a half day training on HIV and universal precautions, along with testimonials from people living with HIV and training to 617 hospital workers who received the same training with an additional half day training on social stigma co-facilitated by people living with HIV found that both interventions were successful in reducing discriminatory behaviors and hospital practices, with the additional half day training on stigma resulting in a greater impact on reducing discrimination and stigma. For example, hospital workers who felt that HIV/AIDS is a punishment for bad behavior declined in one hospital form 44% before the intervention to 19%. After being trained, staff developed their own hospital policies/codes of conduct. These were put on posters and put up around the hospital. The hospital workers who had additional stigma training were 2.3 times less likely to report placing signs on beds indicating HIV status than hospital workers without the stigma training. Training also used the resource “Understanding and Challenging HIV Stigma: A Toolkit for Action” (www.icrw.org/docs/2003-StigmaToolkit.pdf (Kidd et al., 2007)). The intervention also provided sharps containers for safe needle disposal as well as providing hospital workers with a manual on the “safe and friendly hospital worker in the presence of HIV/AIDS.” Guidelines for testing for HIV were created and having hospital policies in place reduced stigma. Approximately 70% of hospital workers were women.
A five-country study in Lesotho, Malawi, South Africa, Swaziland and Tanzania that paired 134 nurses and 41 PLHA to plan and implement interventions to reduce stigma resulted in reductions among PLHA in reported stigma and increases in self-esteem. A significantly higher percentage of nurses who participated in the intervention had an HIV test as compared to nurses who did not participate in the intervention. The interventions were designed to improve information sharing, increase contact with the affected group and improve coping through empowerment.
A pre/post-test study in India of training for health workers in a hospital in India with a survey for 885 health workers resulted in less stigmatizing attitudes and practices by health workers. Based on interviews with health workers and HIV-positive patients, the project developed a “PLHA Friendly Checklist” (www.popcouncil.org/pdfs/horizons/pfechklst.pdf) and trained health workers. When presented with data from their hospital, managers instituted hospital-wide initiatives to combat stigma and discrimination. The number of ward staff who reported that HIV cannot be transmitted by touching someone with HIV increased significantly from 80% to 96%. After the intervention, doctors were more likely to agree that patients should not be tested for HIV without consent, increasing from 37% to 67%. Following training, a significantly greater proportion of doctors reported that they always arranged pre-test counseling (from 31% to 46%) and post-test counseling (56% to 69%). Following training, more doctors wore gloves (64% to 93%) and more ward staff wore gloves to carry blood samples (29% to 93%).
A study of 357 medical and dentistry students in Turkey found that differences between first year and last year students indicated that lectures and increased knowledge about HIV/AIDS decreased stigmatizing attitudes towards HIV/AIDS patients.
A study in China with 1,750 health service providers randomly selected from 40 country hospitals in two provinces found that availability of universal precautions supplies was associated with adherence to universal precautions which in turn led providers being less likely to avoid patients with HIV. “The accessibility and availability of universal precautions supplies at work are necessary conditions for providers complying with universal precautions guidelines in their medical practice” (Li et al., 2011b: 626).
3. Recruiting and training opinion leaders can reduce stigmatizing behaviors in the community.
In China in 2005-2007, analysis of randomized control trial data on use of popular opinion leaders recruited among market workers in Fuzhou to reach their peers with messages about HIV and AIDS resulted in significantly reduced stigmatizing attitudes at 12 and 24 months of follow up. Of the 4510 participants, 2,262 (50.2%) were in the intervention group and the test in the control group. Popular opinion leaders attended four weekly group training sessions and 10 to 12 reunion sessions over a two year period. The intervention was part of the National Institute of Mental Health Collaboration HIV/STD Prevention Trial, designed to reduce HIV/STD incidence and risky sexual behavior through use of community popular opinion leaders trained to convey HIV risk-reduction messages (NIMH, 2007). Perceptions of stigma did not differ between the intervention and control groups at baseline. At the 12 month follow up, the estimated odds of a higher level of HIV-related stigma were almost twice as high and more than five times as high at the 24 month follow up. No changes were seen in the control group over time. Stigma was measured by asking whether participants agreed with statements such as “A person with HIV must have done something wrong and deserves to be punished” (Li et al., 2010a: 117). One limitation of this study is that the stigmatizing views of PLWA were not measured, nor were the data disaggregated.
Note: Because the RCT was not designed to answer the question about stigma and discrimination, this analysis is treated like a cross-sectional observational study with a comparison group.
A study in China with ethnic minorities (the Dai), where most believe in Buddhism, found that training for Buddhist monks improved significantly villagers attitudes score toward people living with HIV. A group of 3,128 villagers was educated by 27 Buddhist monks. Monks were trained in basic knowledge of HIV/AIDS, transmission and prevention and elimination of discrimination against people living with HIV/AIDS. Monks preached HIV/AIDs related information to collectively worshipping villagers who came to the temple. Of the 666 villagers tested at baseline and post-intervention, attitude scores increased from 1.5 to 2.1. “The care and tolerance of the AIDS patient is consistent with the spirit of Buddhist compassion” (Wu et al., 2010: 1015).
4. Support to voluntarily disclose positive serostatus, along with ongoing support, increases HIV-positive women’s ability to cope and reduces perceived stigma in the community. [See also Adherence and Support & Women and Girls]
A qualitative study of interviews with 75 HIV-positive people (43 females, 32 males) from 20 countries, including Australia, Botswana, India, Kenya, South Africa, Thailand, Uganda, Zambia, and Zimbabwe, conducted between 1997 and 1999, found that immediately following diagnosis, most respondents felt shame and a sense of worthlessness. Most carefully guarded the secret of their serostatus for fear of negative repercussions. The average time between diagnosis and public disclosure was 2.6 years, as most people needed to time to talk through their fears with peers or a counselor. Motivation for disclosure was to prevent further infections, challenge stigma, or both. Contributing to community AIDS prevention provides a sense of purpose for many of those interviewed: “It makes you feel like you’ve done something worthwhile” (Paxton et al., 2005: 564).
A study carried out from 1999 to 2001 in Thailand, with 329 HIV-positive women found that HIV-positive women who reported that they could disclose their HIV serostatus gained increased acceptance and support from family and community, accessed support groups that increased their ability to cope with the disease, and increased their access to treatment regimens. Of the 329 women, 57% participated in one or more HIV-positive support groups. One woman stated: “At that time, when I knew I was HIV-positive, I thought, how could I live! Then, I had a chance to learn about a support group. I joined this group. I feel good cause I can meet others who’re the same as me...” (Yoddumnern-Attig et al., 2004: 37). Another stated: “I can get more knowledge from others who have had the same experiences. I feel that there are many people living with HIV, not only me. I feel warm when I join in the group” (Yoddumnern-Attig et al., 2004: 37-38). One woman stated: “In the village, everybody knew my HIV status. At first, they did not accept me, but now they have a good relationship with me. I can eat and talk with them. I think that I can live well in the village” (Yoddumnern-Attig et al., 2004: 37). The women were interviewed using a structured questionnaire. In-depth interviews were conducted among 60 HIV-positive women. Four participatory workshops were held on data analysis and report writing. A week long counseling training session was held for the women conducting interviews. Women interviewed were selected non-randomly from support groups, clinics, ANC clinics, NGOs, and communities using dimensional sampling method. The dimensions used were ages 15-25, 26-35, or 36-49, and number of years from diagnosis. Women who met the criteria for both dimensions were selected based on convenient or snowball sampling techniques. Six focus group discussions were held with six to eight men.
A study in Vietnam with 24 widows living with HIV found that stigma was reduced by joining support groups. Widows, whether HIV-negative or positive, are stigmatized. Support groups helped them to overcome low self-esteem and lack of confidence. As one widow put it: “Talking to others and learning from their experiences has really helped me and given me hope. My partner, whom I met through the group, had the same experience and this had made our love stronger” (Oosterhoff et al., 2010: 30).