Resisting and challenging stigma in Uganda: the role of support groups of people living with HIV

There is no question that the stigma and discrimination associated with HIV and AIDS can be reduced through intervention. The inclusion of stigma and discrimination reduction as a critical component of achieving an AIDS-free generation in recent UNAIDS, UN and PEPFAR political initiatives is promising. Yet national governments need evidence on effective interventions at the individual, community and societal levels in order to strategically incorporate stigma and discrimination reduction into national AIDS plans. Currently, the heterogeneity of stigma and discrimination reduction approaches and measurement makes it challenging to compare and contrast evaluated interventions. Moving forward, it is critical for the research community to: (1) clearly link intervention activities to the domains of stigma to be shifted; (2) assess the stigma domains in a consistent manner; and (3) link stigma and discrimination reduction with HIV prevention, care and treatment outcomes (e.g., uptake, adherence and retention of ART). These steps would further advance the scientific evidence base of stigma and discrimination reduction and allow for the identification of effective interventions that could be scaled up by national governments.
Introduction Adherence to HIV antiretroviral therapy (ART) is a critical determinant of HIV-1 RNA viral suppression and health outcomes. It is generally accepted that HIV-related stigma is correlated with factors that may undermine ART adherence, but its relationship with ART adherence itself is not well established. We therefore undertook this review to systematically assess the relationship between HIV-related stigma and ART adherence. Methods We searched nine electronic databases for published and unpublished literature, with no language restrictions. First we screened the titles and abstracts for studies that potentially contained data on ART adherence. Then we reviewed the full text of these studies to identify articles that reported data on the relationship between ART adherence and either HIV-related stigma or serostatus disclosure. We used the method of meta-synthesis to summarize the findings from the qualitative studies. Results Our search protocol yielded 14,854 initial records. After eliminating duplicates and screening the titles and abstracts, we retrieved the full text of 960 journal articles, dissertations and unpublished conference abstracts for review. We included 75 studies conducted among 26,715 HIV-positive persons living in 32 countries worldwide, with less representation of work from Eastern Europe and Central Asia. Among the 34 qualitative studies, our meta-synthesis identified five distinct third-order labels through an inductive process that we categorized as themes and organized in a conceptual model spanning intrapersonal, interpersonal and structural levels. HIV-related stigma undermined ART adherence by compromising general psychological processes, such as adaptive coping and social support. We also identified psychological processes specific to HIV-positive persons driven by predominant stigmatizing attitudes and which undermined adherence, such as internalized stigma and concealment. Adaptive coping and social support were critical determinants of participants’ ability to overcome the structural and economic barriers associated with poverty in order to successfully adhere to ART. Among the 41 quantitative studies, 24 of 33 cross-sectional studies (71%) reported a positive finding between HIV stigma and ART non-adherence, while 6 of 7 longitudinal studies (86%) reported a null finding (Pearson's χ 2=7.7; p=0.005). Conclusions We found that HIV-related stigma compromised participants’ abilities to successfully adhere to ART. Interventions to reduce stigma should target multiple levels of influence (intrapersonal, interpersonal and structural) in order to have maximum effectiveness on improving ART adherence.
Introduction HIV-related stigma and discrimination continue to hamper efforts to prevent new infections and engage people in HIV treatment, care and support programmes. The identification of effective interventions to reduce stigma and discrimination that can be integrated into national responses is crucial to the success of the global AIDS response. Methods We conducted a systematic review of studies and reports that assessed the effectiveness of interventions to reduce HIV stigma and discrimination between 1 January 2002 and 1 March 2013. Databases searched for peer-reviewed articles included PubMed, Scopus, EBSCO Host –CINAHL Plus, Psycinfo, Ovid, Sociofile and Popline. Reports were obtained from the www.HIVAIDSClearinghouse.eu, USAID Development Experience Clearinghouse, UNESCO HIV and AIDS Education Clearinghouse, Google, WHO and UNAIDS. Ancestry searches for articles included in the systematic review were also conducted. Studies of any design that sought to reduce stigma as a primary or secondary objective and included pre- and post-intervention measures of stigma were included. Results Of 2368 peer-reviewed articles and reports identified, 48 were included in our review representing 14 different target populations in 28 countries. The majority of interventions utilized two or more strategies to reduce stigma and discrimination, and ten included structural or biomedical components. However, most interventions targeted a single socio-ecological level and a single domain of stigma. Outcome measures lacked uniformity and validity, making both interpretation and comparison of study results difficult. While the majority of studies were effective at reducing the aspects of stigma they measured, none assessed the influence of stigma or discrimination reduction on HIV-related health outcomes. Conclusions Our review revealed considerable progress in the stigma-reduction field. However, critical challenges and gaps remain which are impeding the identification of effective stigma-reduction strategies that can be implemented by national governments on a larger scale. The development, validation, and consistent use of globally relevant scales of stigma and discrimination are a critical next step for advancing the field of research in this area. Studies comparing the effectiveness of different stigma-reduction strategies and studies assessing the influence of stigma reduction on key behavioural and biomedical outcomes are also needed to maximize biomedical prevention efforts.
Introduction Global scale up of antiretroviral therapy is changing the context of HIV-related stigma. However, stigma remains an ongoing concern in many countries. Groups of people living with HIV can contribute to the reduction of stigma. However, the pathways through which they do so are not well understood. Methods This paper utilizes data from a qualitative study exploring the impact of networked groups of people living with HIV in Jinja and Mbale districts of Uganda. Participants were people living with HIV (n=40), members of their households (n=10) and their health service providers (n=15). Data were collected via interviews and focus group discussions in 2010, and analyzed inductively to extract key themes related to the approaches and outcomes of the groups’ anti-stigma activities. Results Study participants reported that HIV stigma in their communities had declined as a result of the collective activities of groups of people living with HIV. However, they believed that stigma remained an ongoing challenge. Gender, family relationships, social and economic factors emerged as important drivers of stigma. Challenging stigma collectively transcended individual experiences and united people living with HIV in a process of social renegotiation to achieve change. Groups of people living with HIV provided peer support and improved the confidence of their members, which ultimately reduced self-stigma and improved their ability to deal with external stigma when it was encountered. Conclusions Antiretroviral therapy and group-based approaches in the delivery of HIV services are opening up new avenues for the collective participation of people living with HIV to challenge HIV stigma and act as agents of social change. Interventions for reducing HIV stigma should be expanded beyond those that aim to increase the resilience and coping mechanisms of individuals, to those that build the capacity of groups to collectively cope with and challenge HIV stigma. Such interventions should be gender sensitive and should respond to contextual social, economic and structural factors that drive stigma.
Introduction HIV stigma and discrimination are major issues affecting people living with HIV in their everyday lives. In Thailand, a project was implemented to address HIV stigma and discrimination within communities with four activities: (1) monthly banking days; (2) HIV campaigns; (3) information, education and communication (IEC) materials and (4) “Funfairs.” This study evaluates the effect of project interventions on reducing community-level HIV stigma. Methods A repeated cross-sectional design was developed to measure changes in HIV knowledge and HIV-related stigma domains among community members exposed to the project. Two cross-sectional surveys were implemented at baseline (respondent n=560) and endline (respondent n=560). T-tests were employed to assess changes on three stigma domains: fear of HIV infection through daily activity, shame associated with having HIV and blame towards people with HIV. Baseline scales were confirmed at endline, and each scale was regressed on demographic characteristics, HIV knowledge and exposure to intervention activities. Results No differences were observed in respondent characteristics at baseline and endline. Significant changes were observed in HIV transmission knowledge, fear of HIV infection and shame associated with having HIV from baseline to endline. Respondents exposed to three specific activities (monthly campaign, Funfair and IEC materials) were less likely to exhibit stigma along the dimensions of fear (3.8 points lower on average compared to respondents exposed to none or only one intervention; 95% CI: −7.3 to −0.3) and shame (4.1 points lower; 95% CI: −7.7 to −0.6), net of demographic controls and baseline levels of stigma. Personally knowing someone with HIV was associated with low fear and shame, and females were less likely to possess attitudes of shame compared to males. Conclusions The multivariate linear models suggest that a combination of three interventions was critical in shifting community-level stigma – monthly campaign, Funfair and IEC materials. This is especially important given Thailand's new national AIDS strategy to reduce HIV-related stigma and discrimination by half by 2016. Knowing which interventions to invest in for HIV stigma reduction is crucial for country-wide expansion and scale-up of intervention activities.
Introduction Globally, HIV-related stigma is prevalent in healthcare settings and is a major barrier to HIV prevention and treatment adherence. Some intervention studies have showed encouraging outcomes, but a gap continues to exist between what is known and what is actually delivered in medical settings to reduce HIV-related stigma. Methods This article describes the process of implementing a stigma reduction intervention trial that involved 1760 service providers in 40 hospitals in China. Guided by Diffusion of Innovation theory, the intervention identified and trained about 15–20% providers as popular opinion leaders (POLs) to disseminate stigma reduction messages in each intervention hospital. The intervention also engaged governmental support in the provision of universal precaution supplies to all participating hospitals in the trial. The frequency of message diffusion and reception, perceived improvement in universal precaution practices and reduction in the level of stigma in hospitals were measured at 6- and 12-month follow-up assessments. Results Within the intervention hospitals, POL providers reported more frequent discussions with their co-workers regarding universal precaution principles, equal treatment of patients, provider-patient relationships and reducing HIV-related stigma. Service providers in the intervention hospitals reported more desirable intervention outcomes than providers in the control hospitals. Our evaluation revealed that the POL model is compatible with the target population, and that the unique intervention entry point of enhancing universal precaution and occupational safety was the key to improved acceptance by service providers. The involvement of health authorities in supporting occupational safety was an important element for sustainability. Conclusions This report focuses on explaining the elements of our intervention rather than its outcomes. Lessons learned from the intervention implementation will enrich the development of future programs that integrate this or other intervention models into routine medical practice, with the aim of reducing HIV-related stigma and improving HIV testing, treatment and care in medical settings.
Introduction Stigma associated with HIV has been documented as a barrier for accessing quality health-related services. When the stigma manifests in the healthcare setting, people living with HIV receive substandard services or even be denied care altogether. Although the consequences of HIV stigma have been documented extensively, efforts to reduce these negative attitudes have been scarce. Interventions to reduce HIV stigma should be implemented as part of the formal training of future healthcare professionals. The interventions that have been tested with healthcare professionals and published have several limitations that must be surpassed (i.e., lack of comparison groups in research designs and longitudinal follow-up data). Furthermore, Latino healthcare professionals have been absent from these intervention efforts even though the epidemic has affected this population disproportionately. Methods In this article, we describe an intervention developed to reduce HIV stigma among medical students in Puerto Rico. A total of 507 medical students were randomly introduced into our intervention and control conditions. Results The results show statistically significant differences between the intervention and control groups; intervention group participants had lower HIV stigma levels than control participants after the intervention. In addition, differences in HIV stigma levels between the groups were sustained for a 12-month period. Conclusions The results of our study demonstrate the efficacy of the modes of intervention developed by us and serve as a new training tool for future healthcare professionals with regard to stigma reduction.
Introduction Within healthcare settings, HIV-related stigma is a recognized barrier to access of HIV prevention and treatment services and yet, few efforts have been made to scale-up stigma reduction programs in service delivery. This is in part due to the lack of a brief, simple, standardized tool for measuring stigma among all levels of health facility staff that works across diverse HIV prevalence, language and healthcare settings. In response, an international consortium led by the Health Policy Project, has developed and field tested a stigma measurement tool for use with health facility staff. Methods Experts participated in a content-development workshop to review an item pool of existing measures, identify gaps and prioritize questions. The resulting questionnaire was field tested in six diverse sites (China, Dominica, Egypt, Kenya, Puerto Rico and St. Christopher & Nevis). Respondents included clinical and non-clinical staff. Questionnaires were self- or interviewer-administered. Analysis of item performance across sites examined both psychometric properties and contextual issues. Results The key outcome of the process was a substantially reduced questionnaire. Eighteen core questions measure three programmatically actionable drivers of stigma within health facilities (worry about HIV transmission, attitudes towards people living with HIV (PLHIV), and health facility environment, including policies), and enacted stigma. The questionnaire also includes one short scale for attitudes towards PLHIV (5-item scale, α = 0.78). Conclusions Stigma-reduction programmes in healthcare facilities are urgently needed to improve the quality of care provided, uphold the human right to healthcare, increase access to health services, and maximize investments in HIV prevention and treatment. This brief, standardized tool will facilitate inclusion of stigma measurement in research studies and in routine facility data collection, allowing for the monitoring of stigma within healthcare facilities and evaluation of stigma-reduction programmes. There is potential for wide use of the tool either as a stand-alone survey or integrated within other studies of health facility staff.
Introduction In Kenya, human rights violations have a marked impact on the health of people living with HIV. Integrating legal literacy and legal services into healthcare appears to be an effective strategy to empower vulnerable groups and address underlying determinants of health. Methods We carried out an evaluation to collect evidence about the impact of legal empowerment programmes on health and human rights. The evaluation focused on Open Society Foundation-supported legal integration activities at four sites: the Academic Model of Providing Access to Healthcare (AMPATH) facility, where the Legal Aid Centre of Eldoret (LACE) operates, in Eldoret; Kenyatta National Hospital's Gender-based Violence Recovery Centre, which hosts the COVAW legal integration program; and Christian Health Association of Kenya (CHAK) facilities in Mombasa and Naivasha. In consultation with the organizations implementing the programs, we designed a conceptual logic model grounded in human rights principles, identified relevant indicators and then coded structure, process and outcome indicators for the rights-related principles they reflect. The evaluation included a resource assessment questionnaire, a review of program records and routine data, and semi-structured interviews and focus group discussions with clients and service providers. Data were collected in May–August 2010 and April–June 2011. Results Clients showed a notable increase in practical knowledge and awareness about how to access legal aid and claim their rights, as well as an enhanced ability to communicate with healthcare providers and to improve their access to healthcare and justice. In turn, providers became more adept at identifying human rights violations and other legal difficulties, which enabled them to give clients basic information about their rights, refer them to legal aid and assist them in accessing needed support. Methodological challenges in evaluating such activities point to the need to strengthen rights-oriented evaluation methods. Conclusions Legal empowerment programmes have the potential to promote accountability, reduce stigma and discrimination and contribute to altering unjust structures and systems. Given their apparent value as a health and human rights intervention, particularly for marginalized populations, further rigorous evaluations are called for to support the scale-up of such programmes.
Introduction HIV stigma inflicts hardship and suffering on people living with HIV (PLHIV) and interferes with both prevention and treatment efforts. Health professionals are often named by PLHIV as an important source of stigma. This study was designed to examine rates and drivers of stigma and discrimination among doctors, nurses and ward staff in different urban healthcare settings in high HIV prevalence states in India. Methods This cross-sectional study enrolled 305 doctors, 369 nurses and 346 ward staff in both governmental and non-governmental healthcare settings in Mumbai and Bengaluru, India. The approximately one-hour long interviews focused on knowledge related to HIV transmission, personal and professional experiences with PLHIV, instrumental and symbolic stigma, endorsement of coercive policies, and intent to discriminate in professional and personal situations that involve high and low risk of fluid exposure. Results High levels of stigma were reported by all groups. This included a willingness to prohibit female PLHIV from having children (55 to 80%), endorsement of mandatory testing for female sex workers (94 to 97%) and surgery patients (90 to 99%), and stating that people who acquired HIV through sex or drugs “got what they deserved” (50 to 83%). In addition, 89% of doctors, 88% of nurses and 73% of ward staff stated that they would discriminate against PLHIV in professional situations that involved high likelihood of fluid exposure, and 57% doctors, 40% nurses and 71% ward staff stated that they would do so in low-risk situations as well. Significant and modifiable drivers of stigma and discrimination included having less frequent contact with PLHIV, and a greater number of transmission misconceptions, blame, instrumental and symbolic stigma. Participants in all three groups reported high rates of endorsement of coercive measures and intent to discriminate against PLHIV. Stigma and discrimination were associated with multiple modifiable drivers, which are consistent with previous research, and which need to be targeted in future interventions. Conclusions Stigma reduction intervention programmes targeting healthcare providers in urban India need to address fear of transmission, improve universal precaution skills, and involve PLHIV at all stages of the intervention to reduce symbolic stigma and ensure that relevant patient interaction skills are taught.
Introduction The African American church is a highly influential institution with the potential to greatly increase the reach of HIV prevention interventions and address HIV-related stigma in US African American communities. However, there are few studies on HIV-related stigma and African American church populations. This study explored HIV-related stigma among church and community members participating in an HIV education and testing intervention pilot study in African American churches, named Taking It to the Pews. Methods Four African American churches located in Kansas City, MO and KS, were randomized to either intervention or comparison groups. Churches assigned to the intervention group received religiously tailored HIV education, testing and compassion messages/activities (e.g., sermons, brochures/church bulletins, testimonials) via the Taking It to the Pews HIV Tool Kit. Comparison churches received non-religiously tailored HIV information. HIV-related stigma was assessed with 543 church members and with community members served through church outreach services (e.g., food/clothing pantries, social services) in the four churches. Participants completed surveys at baseline, 6 months and 12 months to assess their HIV-related stigma beliefs, exposure to intervention components and satisfaction with the study. Results At baseline, HIV-related stigma beliefs were similar across experimental groups and were quite low. Mean HIV-related stigma scores were not significantly different between experimental groups at 6 months (p=0.92) or at 12 months (p=0.70). However, mean HIV-related stigma scores within both groups showed decreasing trends at six months, which approached significance. Analysis of previously studied HIV-related stigma factors (e.g., age, gender, income, HIV knowledge, religiosity) did not yield changes in the null findings. Intervention group participants were highly exposed to several intervention components (sermons, HIV resource tables, posters, brochures/church bulletins). Overall, participants were highly satisfied with the intervention pilot study. Conclusions African American churches may be well positioned to increase the reach of HIV prevention interventions to church and community members and could serve an important role in addressing HIV-related stigma in their church communities. Future research is needed on measuring HIV-related stigma beliefs and on testing intensive, scalable, religiously tailored HIV interventions to impact HIV-related stigma in African American churches.
Introduction Men who have sex with men (MSM) often face socially sanctioned disapproval of sexual deviance from the heterosexual “normal.” Such sexual stigma can be internalized producing a painful affective state (i.e., shame). Although shame (e.g., addiction) can predict risk-taking (e.g., alcohol abuse), sexual shame's link to sexual risk-taking is unclear. Socially Optimized Learning in Virtual Environments (SOLVE) was designed to reduce MSM's sexual shame, but whether it does so, and if that reduction predicts HIV risk reduction, is unclear. To test if at baseline, MSM's reported past unprotected anal intercourse (UAI) is related to shame; MSM's exposure to SOLVE compared to a wait-list control (WLC) condition reduces MSM's shame; and shame-reduction mediates the link between WLC condition and UAI risk reduction. Methods HIV-negative, self-identified African American, Latino or White MSM, aged 18–24 years, who had had UAI with a non-primary/casual partner in the past three months were recruited for a national online study. Eligible MSM were computer randomized to either WLC or a web-delivered SOLVE. Retained MSM completed baseline measures (e.g., UAI in the past three months; current level of shame) and, in the SOLVE group, viewed at least one level of the game. At the end of the first session, shame was measured again. MSM completed follow-up UAI measures three months later. All data from 921 retained MSM (WLC condition, 484; SOLVE condition, 437) were analyzed, with missing data multiply imputed. Results At baseline, MSM reporting more risky sexual behaviour reported more shame (r s=0.21; p
Introduction Same-sex practices and orientation are both stigmatized and criminalized in many countries across sub-Saharan Africa. This study aimed to assess the relationship of fear of seeking healthcare and disclosure of same-sex practices among a sample of men who have sex with men (MSM) in Swaziland with demographic, socio-economic and behavioural determinants. Methods Three hundred and twenty-three men who reported having had anal sex with a man in the past year were recruited using respondent-driven sampling and administered a structured survey instrument. Asymptotically unbiased estimates of prevalence of stigma and human rights abuses generated using the RDSII estimator are reported with bootstrapped confidence intervals (CIs). Weighted simple and multiple logistic regressions of fear of seeking healthcare and disclosure of same-sex practices to a healthcare provider with demographic, social and behavioural variables are reported. Results Stigma was common, including 61.7% (95% CI=54.0–69.0%) reporting fear of seeking healthcare, 44.1% (95% CI=36.2–51.3%) any enacted stigma and 73.9% (95% CI=67.7–80.1%) any perceived social stigma (family, friends). Ever disclosing sexual practices with other men to healthcare providers was low (25.6%, 95% CI=19.2–32.1%). In multiple logistic regression, fear of seeking healthcare was significantly associated with: having experienced legal discrimination as a result of sexual orientation or practice (aOR=1.9, 95% CI=1.1–3.4), having felt like you wanted to end your life (aOR=2.0, 95% CI=1.2–3.4), having been raped (aOR=11.0, 95% CI=1.4–84.4), finding it very difficult to insist on condom use when a male partner does not want to use a condom (aOR=2.1, 95% CI=1.0–4.1) and having a non-Swazi nationality at birth (aOR=0.18, 95% CI=0.05–0.68). In multiple logistic regression, disclosure of same-sex practices to a healthcare provider was significantly associated with: having completed secondary education or more (aOR=5.1, 95% CI=2.5–10.3), having used a condom with last casual male sexual partner (aOR=2.4, 95% CI=1.0–5.7) and having felt like you wanted to end your life (aOR=2.1, 95% CI=1.2–3.8). Conclusions MSM in Swaziland report high levels of stigma and discrimination. The observed associations can inform structural interventions to increase healthcare seeking and disclosure of sexual practices to healthcare workers, facilitating enhanced behavioural and biomedical HIV-prevention approaches among MSM in Swaziland.
Introduction HIV infection may be affected by multiple complex socioeconomic status (SES) factors, especially individual socioeconomic disadvantage and community-level inequality. At the same time, stigma towards HIV and marginalized groups has exacerbated persistent concentrated epidemics among key populations, such as persons who inject drugs (PWID) in Vietnam. Stigma researchers argue that stigma fundamentally depends on the existence of economic power differences in a community. In rapidly growing economies like Vietnam, the increasing gap in income and education levels, as well as an individual's absolute income and education, may create social conditions that facilitate stigma related to injecting drug use and HIV. Methods A cross-sectional baseline survey assessing different types of stigma and key socioeconomic characteristics was administered to 1674 PWID and 1349 community members living in physical proximity throughout the 32 communes in Thai Nguyen province, Vietnam. We created four stigma scales, including HIV-related and drug-related stigma reported by both PWID and community members. We then used ecologic Spearman's correlation, ordinary least-squares regression and multi-level generalized estimating equations to examine community-level inequality associations, individual-level SES associations and multi-level SES associations with different types of stigma, respectively. Results There was little urban–rural difference in stigma among communes. Higher income inequality was marginally associated with drug-related stigma reported by community members (p=0.087), and higher education inequality was significantly associated with higher HIV-related stigma reported by both PWID and community members (p