More than three decades into the HIV epidemic, stigma and discrimination continue to hamper efforts to prevent new infections. Numerous studies have linked HIV-related stigma with refusal of HIV testing, with non-disclosure of HIV status to partners, and with poor engagement in biomedical prevention approaches.
In the Indian context, where female sex workers (FSWs) possess a 50-fold greater risk of HIV infection than women in the general population, there is an urgent need for stigma-reduction interventions. Evidence suggests that stigma and discrimination heighten FSWs’ vulnerability to HIV infection by discouraging them from attending clinics for management of sexually transmitted infections (STIs), by diminishing their self-esteem, and by depriving them of impartial medical care.
Karnataka Health Promotion Trust (KHPT) implemented a two-year intensive stigma-reduction intervention in two northern districts of Karnataka during 2012 and 2013. In these two districts, stigma and discrimination were widely prevalent among FSWs and their family members, and incidents of stigma and discrimination against HIV-positive FSWs in their community and medical settings were reported by a majority of the respondents in the intervention’s baseline survey.
A pre-post test research design, with repeated cross-sectional surveys undertaken prior to the implementation of intervention activities (baseline) and at their conclusion (endline), was used to evaluate the effects of the intervention. Both surveys were conducted by KHPT with the support of members of two community-based organizations (CBOs): Shakti AIDS Tadegattuva Mahila Sangha and Chaitanya AIDS Tadegattuva Mahila Sangha.
In total, 478 FSWs (240 at baseline and 238 at endline) and 306 family members (154 and 152 at the baseline and endline, respectively) participated in the study and responded to all survey questions.
Profile of the sex workers and family members
- 60% of the FSWs were exposed to at least one of the three stigma-reduction related activities designed for them
- 50% of the FSWs also attended events organised at a DIC focusing on stigma and discrimination reduction activities
- Findings show a significant improvement in HIV testing done in the 6-month period preceding the survey
Knowledge of modes of HIV transmission among family members
- More than 90% of respondents in both surveys identified unprotected sex, sharing injection equipment, and blood transfusions as modes of transmission
- More than twice the proportion of endline respondents (48%) than baseline respondents (23%) had correct comprehensive knowledge about HIV, and about half of the participants in the endline, compared to about 12% in the baseline, rejected all other misconceptions (that HIV can be transmitted by kisses, handshakes, hugs, utensils, toilets, sweat or saliva)
- 23% at endline incorrectly identified kissing as a mode of transmission
Fears associated with HIV infection
- Among FSWs and their family members, the fear associated with HIV infection decreased in the period between baseline and endline, with the reduction among FSWs being larger than among family members
- At the endline, 45% of the FSWs and 47% of the family members disagreed with all six fear statements than their respective counterparts interviewed during the baseline survey
Shame and blame for HIV
- Findings suggested that a higher proportion of FSWs in the endline (57%) than in the baseline (14%) disagreed to all the shame statements, (respondents would be ashamed if someone in their family had HIV/AIDS, and family members of PLHIV and PLHIV themselves should feel ashamed of being infected with HIV)
- Similar to the perceptions associated with being ashamed of HIV infection, a significantly higher proportion of FSWs (39%) and their family members (31%) at the endline disagreed with the statements that only FSWs bring HIV infection in the community and PLHIV should be blamed for bringing HIV in the community, as compared to 16% of FSWs and 11% of family members interviewed in the baseline
Stigma and discrimination towards PLHIV
- Percentages affirming stigmatized attitudes towards people living with HIV (PLHIV)—such as HIV-positive children should not go to school, PLHIV should stay away from religious functions, and positive sex workers should be treated differently than other positive persons—reduced consistently from baseline to endline and among both the groups
- Similar magnitudes of change were observed, with slightly higher reduction among FSWs than the family members (50% vs. 45% point reduction)
Disclosure of HIV status
- Nearly equal proportions of FSWs at baseline and endline cited fear of verbal abuse and teasing, fear of neglect and isolation, and fear of being bad/immoral or promiscuous in the community as reasons why they would not disclose their HIV test results with anyone else in the community
- Fear of neglect from the community in terms of receiving care and support, and fear of death were two other most commonly cited reasons due to which most of the family members perceived that sex workers in their community would choose to keep their HIV status secret
Stigma and discrimination witnessed by FSWs and family members
- While 34% to 78% of the FSWs in the endline reported having witnessed any incident of stigma against positive sex workers by family, friends or healthcare professionals, the same was reported by 90% or more of the FSWs during the baseline
Although stigma and discrimination were widely prevalent among FSWs and family members in the intervention area, there is evidence that intervention activities brought significant changes in the attitudes and behaviour of sex workers and their family members towards PLHIV, and a reduction in the incidence of stigma and discrimination against PLHIV in the community and in healthcare settings.
However, the findings suggest that multi-layered and multi-faceted interventions are required to achieve behavioural and attitudinal changes pertaining to stigma, shame and blame within a short period of time. Similar intervention activities can be piloted and tested in other settings to ascertain their effect. If found replicable and scalable, the activities can be embedded in national AIDS control and prevention programmes to increase utilization of prevention, treatment and care services.