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Community-based interventions against HIV-related stigma: a systematic review of evidence in Sub-Saharan Africa

Systematic Reviews volume 14, Article number: 8 (2025) Cite this article

Abstract

Background

HIV-related stigma remains a key barrier to the attainment of the UNAIDS global goal of ending AIDS by 2030. Due to the social and contextual nature of HIV-related stigma, community-based interventions may be more effective in addressing it. In this review, we synthesized evidence on the effectiveness and features of community-based interventions against HIV-related stigma in Sub-Saharan Africa.

Methods

MEDLINE, EMBASE, CINAHL, Psych INFO, and Web of Science were searched in July 2023. We also searched Google Scholar and reference lists of all selected studies. Included studies were randomized controlled trials, mixed methods studies, as well as pre-test and post-test studies that evaluated the effectiveness of a community-based intervention to reduce HIV-related stigma in the general population or among specific groups. Data extraction was done using a pre-designed and pre-tested form. We performed a synthesis without meta-analysis, utilizing Fisher’s method to combine p-values, to demonstrate evidence of an effect in at least one study. Additionally, we applied framework thematic analysis to qualitatively synthesize the intervention characteristics of the included studies.

Results

A total of nine journal articles were included, largely with a high risk of bias. Results from the combined p-values provide strong evidence supporting the effectiveness of community-based interventions in reducing HIV-related stigma in at least one of the studies (p < 0.001, X2 = 73.1, 18 degrees of freedom). Most studies involved people living with HIV (PLH) alone as intervention recipients and as intervention implementers. Community members with unknown HIV status were involved in only 2 studies. The intervention strategies were largely information sharing through workshops and training as well as individualized counselling. In few studies, additional support in the form of referrals, nutritional supplements, and adherence support was provided to PLH during the interventions. Most studies were judged to be of moderate to high cost except in 3 where the intervention implementers were PLH within the community, volunteering in the home-based support approach. The involvement of community members in the design of intervention strategies was not seen in all the studies.

Conclusion

Community-based interventions appear to be effective in reducing HIV-related stigma. However, more robust randomized trials are needed to provide stronger evidence for this effect. Although these interventions have been multifariously developed in Sub-Saharan Africa, comprehensive strategies involving the stigmatized and the “stigmatizers” in a social change approach are lacking. The application of strategies without the involvement of community members in their design takes away a sense of community responsibility, and this threatens the sustainability of such interventions.

Systematic review registration

PROSPERO CRD42023418818.

Peer Review reports

Background

HIV-related stigma persists as a significant barrier in the fight against HIV/AIDS and consequently the attainment of the global goal of ending AIDS by 2030 [1]. Stigma stifles disclosure of HIV status [2], adherence to antiretroviral medication [3], prevention of HIV transmission [4], and social support [5, 6]. Consequently, stigma violates the entire HIV care cascade, basic human rights, and the quality of life of people living with HIV (PLH). It is imperative to intensify actions against HIV-related stigma if the fight against the HIV pandemic of over 4 decades is to be won. Such actions should be grounded on a clear understanding of the nature and construction of stigma.

In his crucial work, Gofman defines stigma as an attribute that is deeply discreditable or discredited in society leading to a deviant persona [7]. The discreditable are those with concealable attributes such as living with HIV while the discredited possess overt traits like a physical disability and color [8]. People’s experiences with stigma differ depending on the extent of concealability. PLH tend to “pass” as “normal” by concealing their stigma, yet they remain discreditable due to the high potential of being revealed [7]. Additionally, concealment of HIV occurs at high physiological and social cost [9, 10] such as distress due to heightened vigilance, inadvertent disclosures, and self-isolation. This makes HIV-related stigma unique.

The understanding of HIV-related stigma has been diversely framed by scholars. For instance, Deacon defines it as “negative things people believe about HIV/AIDS and PLH” ([11] p.6). Such beliefs reside in communities and are shaped by historical events about HIV and access to credible information as well as deliberate efforts to transform information into knowledge for communities.

For example, in many African communities, HIV and AIDS are often perceived as a result of immoral behavior and a form of punishment from God or ancestors. Earnshaw and Chaudoir argue that personal experiences and consequences of HIV-related stigma are determined by the way social mechanisms of HIV/AIDS impact individuals including those without HIV/AIDS [12]. In their model, HIV/AIDS is a socially devalued attribute that evokes peoples’ reactions whenever it emerges. For people without HIV, their awareness that PLH exist threatens their health, and may possess moral blemishes [13], and evokes prejudice, stereotypes, and discrimination leading to enacted stigma. Those with HIV react due to the awareness that they are social deviants who may have violated social morals and are thus subject to other peoples’ disapproval and negative treatment. They therefore experience internalized and anticipated stigma.

HIV-related stigma emerges through social endorsement of the diminished status of PLH, and it is manifested through discounting, discrediting, and discriminating of such people and their associates [14]. Current literature points to fear of infection, lack of basic HIV/AIDS knowledge, and socio-cultural beliefs as key drivers of HIV-related stigma [15, 16]. Also, context-specific belief systems on HIV/AIDS sprout and propagate negative attitudes and disvaluing social behaviors. Therefore HIV-related stigma varies across social contexts necessitating reparation for it to be contextual. Due to its multifaceted and multilevel nature, fighting HIV-related stigma requires wholistic interventions that cover a broad array of community-specific aspects to create fundamental shifts in knowledge, attitudes, and behavior.

Community-based interventions have recently gained prominence in the fight against HIV-related stigma. Such interventions are based on the rationale that stigmatizing beliefs, attitudes, and practices arise from social interactions within particular settings, and they should be addressed similarly. Additionally, interventions ought to focus on both the stigmatized and the “stigmatizers” for the different shades of stigma to be addressed. However, for the effective design of wholistic community-based interventions, different actions ought to be integrated. This is only possible if different effective community actions are identified. In this study, we synthesized evidence on features of community-based interventions that have been reported as effective in the reduction of HIV-related stigma. This will act as a knowledgebase for designing effective interventions against HIV-related stigma in the context of Sub-Saharan Africa where HIV remains a significant public health challenge. This review thus answered the question, How effective are community-based interventions against HIV-related stigma and what are the key features of such interventions?

Methods

We followed Cochrane guidelines for systematic reviews and meta-analysis [17] and the updated Preferred Reporting Items of Systematic Reviews and Metanalysis (PRISMA) statement of 2020 [18]. The review protocol was developed and registered with the International Prospective Register of Systematic Reviews (PROSPERO), registration number CRD42023418818.

Search strategy

We formulated a comprehensive search strategy for PubMed, EMBASE, CINAHL, Psych INFO, and Web of Science databases. We used the Cochrane HIV/AIDS collaboration search string for HIV/AIDS AND our developed strings of community OR similar AND intervention OR similar AND stigma OR similar (see additional file 1 for search strategy used in PubMed). Database searches were conducted in July and August 2023 by the first author (EK). EK created monthly email alerts in each database to be notified of new studies that conformed to the search strategy. By the time this manuscript was submitted, no new study merited inclusion. Reference lists of selected studies were also checked by EK to detect other eligible studies using the same inclusion and exclusion criteria.

Inclusion and exclusion criteria

Included studies were published randomized controlled trials, quasi experimental studies, and pre-test and post-test studies that evaluated the effectiveness of a community-based intervention to reduce HIV-related stigma in the general population or among specific groups. We included specific or general intervention campaigns such as behavioral, educational, and socio-economic actions targeted at a population level or at specific groups within a defined local community [19] with the aim of reducing HIV-related stigma as one of the outcomes. We were cognizant of the various representations of HIV-related stigma informed by several studies we have conducted on the topic [20,21,22]. Terms like “negative attitude,” stereotyping, prejudice, mistreatment, discrimination, and isolation were thus included in the search. Studies were excluded if (1) they did not clearly indicate the target population and (2) the effectiveness was assessed qualitatively.

Study selection and data extraction

All search results from databases were imported into a reference management software, Zotero standalone, and duplicates were removed. EK initially scanned through the titles and abstracts to eliminate studies that were obviously irrelevant to the review. IP and AM, working independently, then applied the inclusion and exclusion criteria to full text of all remaining references to obtain the eligible studies. They met after selecting eligible studies to compare their selection. Disagreements were resolved by consensus with the involvement of another reviewer, EM. A pre-designed data extraction sheet for each selected study was completed by two reviewers AM and LA, working independently. Extracted data included the following information: study details (area/settings, citation, design, data collection methods, and analysis), participant details (age, sex, occupation, category), intervention details, and outcome details (Tables 1 and 2). After data extraction, AM and LA met to compare their data, and discrepancies were resolved by consensus involving a third reviewer (EM).

Table 1 Characteristics of included studies
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Table 2 Outcome summaries
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Outcomes and measures

The primary outcome measured was the change in HIV-related stigma, defined as a reduction in negative beliefs, attitudes, and discriminatory behaviors toward people living with HIV or an increase in positive attitudes toward them. We included all types of stigma, such as internalized, anticipated, and enacted stigma. The studies utilized various stigma assessment scales to evaluate these changes.

Data analysis

Due to methodological and clinical heterogeneity in the included studies, we could not undertake a meta-analysis. We thus conducted synthesis without meta-analysis. For the quantitative data, the absence of effect estimates or sufficient data to calculate them precluded summarizing effect estimates from included studies. We followed Fisher’s method to combine p-values in order to determine if there is evidence of an effect in at least one study. Using one-sided p-values, we calculated the chi-square statistic with 18 degrees of freedom to test the hypothesis that there is no evidence of an effect in at least one study. The associated p-value was obtained using a command = CHIDIST(X2 value, df) in an Excel spreadsheet. A visual display of the statistical data of included studies is presented in the albatross plot (Fig. 2).

Framework analysis was also used to synthesize the main features of interventions described in the included studies. A priori framework of thematic categories was developed by all authors based on the research question and some constructs in the first domain of the Consolidated Framework of Implementation Research (CFIR) called intervention characteristics [32]. The CFIR provides a comprehensive framework of constructs to guide successful implementation and evaluation of interventions. The main features of interventions are reported in 3 deductive thematic categories: actors in the interventions, intervention processes, as well as costs and sustainability of the intervention.

Assessment of quality of evidence

Included studies are of 2 categories and separate Cochrane Risk of Bias (RoB) tools [33] were used for each category. The Risk of Bias 2 (RoB-2) was used to assess RoB in randomized controlled trials, while Risk of Bias in Non-Randomized Studies 1 (ROBINS-I) was used for non-randomized trials of interventions. The assessment was based on 3 grades for the randomized controlled trials: low risk of bias, moderate risk of bias, and high risk of bias. For non-randomized trials of interventions, three grades, low risk, moderate risk, and critical risk, were used. The online Risk of Bias Visualization (RoBvis) tool was used to visualize the assessment results for each study in all assessment domains. Two reviewers EM and LA worked independently to assess the RoB.

Results

Search results

A total of 1067 titles were obtained, 1065 from searching of electronic databases and 2 titles from searching reference lists of eligible studies. After removing 568 duplicate titles, 499 titles were left for screening. The screening of titles and abstracts eliminated 487 titles leaving 12 titles for full-text assessment of eligibility. Full text of the 12 articles was obtained and printed out for thorough reading to assess eligibility, guided by the pre-set inclusion and exclusion criteria. At this stage, 3 articles were found ineligible. We therefore included 9 studies in the systematic review and none in the meta-analysis. Figure 1 below shows the study selection process.

Fig. 1
figure 1

Study flow diagram

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Description of included studies

Study location and settings

Three of the included studies were conducted in South Africa [23, 26, 28], two in Zimbabwe [24, 31], two in Kenya [27, 30], one in Ethiopia [25], and one in Malawi [29]. All studies were conducted within the community but in different settings. Four studies were conducted in homes of people living with HIV [25, 27, 28, 31], three in schools [23, 29, 30], and two in unspecified settings within the community [24, 26].

Study design and participants

Studies employed 3 different designs: a randomized controlled trial design was used in 5 studies [25, 27, 28, 30, 31], a pre-test and post-test design in three [23, 26, 29], and mixed methods in one [24]. Studies involved both male and female participants of various categories. People living with HIV (PLH) were involved in 6 studies [24,25,26, 28, 30, 31]. Among the 6 studies that involved PLH, 2 reported involving adolescents [30, 31]. Educators/teachers were involved in three studies [23, 29, 30].

Characteristics of included studies

Intervention characteristics

Key features of interventions are reported in 3 major themes that were developed during the analysis. These are described below.

Actors and sites of interventions

We categorized actors in interventions as implementers and intervention recipients. Studies reported varying categories of individuals in both groups. In 4 studies [25, 28, 30, 31], the implementers were known to be living with HIV and thus acted as peer supporters/mentors [28, 31], community social workers [25], and volunteers [30]. In 4 studies, the HIV status of implementers was not explicitly stated [23, 24, 27, 29]. These included community members [27] and teachers [23, 29, 30]. In one study [26], PLH and those whose status was unknown were involved as intervention implementers.

Intervention recipients also varied across studies. Four studies focused exclusively on PLH [24, 25, 28, 31], while others included both PLH and individuals with unknown HIV status [26, 30]. Additionally, some studies targeted only individuals with unknown HIV status [23, 27, 29]. The study by Chindrawi et al. [26] involved PLH and people living close (PLC) to them. The PLCs were spouses/partners, children of PLH, family members, friends, religious leaders, and community members. In 3 studies [23, 29, 30], schoolteachers were the intervention recipients, while in another study [27], all consenting adults in households were targeted.

Although all included studies were categorized as community-based, they were conducted under different settings. Three studies were conducted in educational institutions, that is teacher training colleges [29] as well as primary and secondary schools [23, 30]. Four studies were conducted in households [25, 27, 28, 31], and 2 were not explicit on the exact settings within the community [24, 26].

Intervention processes

Interventions reported in the included studies involved a variety of actions and interactions by the various actors described in the preceding theme. All interventions involved information sharing through different fora in the form of individual sessions or group sessions or both. In 2 studies, information sharing occurred through workshops and lectures [24, 26]. In one study [23], simulations of a person living with HIV were done through a digital platform using a compact disc read-only memory (CD-ROM) computer program and roleplay without direct contact with PLH. This was to build capacity of teachers to act as mentors and be able to address HIV-related issues within school and classroom settings. The study by Chidrawi et al. [26] involved workshops and lectures involving PLH and PLC to improve interactions between them, the understanding of HIV stigma, and the management of disclosure. Ferris France et al. [24] involved the intervention team working with PLH to address self-stigmatizing beliefs through face-to-face workshops, remote classes, and self-inquiry, as well as peer and mentor methods. In one school-based study [30], teachers underwent a multi-media HIV-stigma focused training.

Individualized counselling, health education, and other forms of social support including referrals to healthcare facilities for management of emerging health issues were reported in 5 studies [25, 27,28,29, 31]. The intervention by Lifson et al. [25] involved community social workers (CSW) who visited PLH and offered the intervention package, while for Low et al. [27], the same was delivered through the home-based counselling and testing program for all consenting adults. The intervention by Masquillier et al. [28] involved the provision of nutritional supplements during the visits to PLH, in addition to the counselling and other support. The one-on-one (friend-to-friend) intervention by Norr et al. [29] involved peer sessions covering various topics including HIV stigma. In the study by Willis et al. [31], community adolescent treatment supporters provided counselling to adolescents living with HIV in addition to monitoring their adherence to antiretroviral therapy and general well-being.

Cost and sustainability of interventions

Studies were not explicit on the cost of the interventions and how interventions would be sustained. We thus devised a framework to assess the cost of the interventions and their likelihood to be sustained by the community members. Four criteria were used to make judgement: number of people involved, level of motivation/incentive to engage in the intervention, and procurable tools used. Based on these, interventions were judged as low cost and sustainable, moderate cost and likely to be sustained, as well as high cost and unsustainable.

Interventions in three studies [25, 28, 31] were judged low cost and sustainable. These involved few individuals (PLH working with community social workers/peer adherence supporters/community adolescent treatment supporters) at household level. The one-on-one interaction would lead to a sense of accountability and individualized responsibility for continuity.

Four interventions [23, 24, 27, 30] were found to be of moderate cost and likely to be sustained. Costs were deduced from the purchase of computers/television sets and associated repairs for interactive digital media [23, 30], workshops for teachers in schools [24], and community-wide sensitization for home-based testing and counselling [27]. These also involved more people with the likelihood of self-propagation.

The intervention by Chindrawi et al. [26] was judged to be of high cost and less likely to be sustained. This intervention involved trainings, lectures, and workshops with varied groups of people (PLH and people close to them). Although it required different groups of people living close to PLH to develop their own strategies, we judged that their motivation to do so would be less likely and the intervention would not be sustained.

Outcomes

Effect of intervention and direction of effect

Most studies [23, 24, 26,27,28, 30, 31] reported a positive effect of the intervention, defined here as a reduction in HIV-related stigma. Only two studies [25, 29] found no significant effect. Using Fisher’s method to combine the one-sided p-values from the included studies yielded a chi-square statistic of 73.1 with 18 degrees of freedom, resulting in a p-value of less than 0.001. This indicates a significant effect and supports rejecting the null hypothesis. The intervention thus caused a significant effect in decreasing HIV-related stigma in at least one of the studies.

The albatross plot (Fig. 2) shows that although the interventions in most studies [23, 24, 26,27,28, 30, 31] had a positive effect on HIV-related stigma, they involved generally small sample sizes and thus less powerful. The studies with larger sample sizes [28, 31] had lower p-values, which suggests more statistically significant results.

Fig. 2
figure 2

Statistical data of included studies

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Results for assessment of quality of evidence

Risk of bias for cluster randomized trials

As shown in Fig. 3, our overall risk of bias judgement for the cluster randomized trials indicated some concerns for 3 studies [25, 27, 31] and high risk of bias for 2 studies [28, 30]. In all these trials, the randomization process was not elaborated.

Fig. 3
figure 3

Risk of bias visualization for cluster randomized trials

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Risk of bias for non-randomized studies

In the non-randomized studies, half of the studies were judged to have moderate risk [24, 29], and critical risk was found in the others [23, 26] as shown in Fig. 4. Critical risk in the selection of participants was in all studies. Bias due to confounding was judged critical in one study [26] and moderate in 3 [23, 24, 29].

Fig. 4
figure 4

Risk of bias visualization for non-randomized studies

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Discussion

In this review, we aimed to synthesize evidence on the effectiveness and characteristics of community-based interventions against HIV-related stigma. Our understanding of such interventions was informed by the work of McLeroy et al. [19] who define them as “programs and initiatives that aim to improve the health and well-being of specific population groups within a defined local community.” Such interventions bank on the community as a setting for delivery, target, source of agents, and a source of resources [34]. We found substantial evidence that these interventions can help reduce HIV-related stigma. However, due to considerable methodological and clinical heterogeneity among the included studies, we could not calculate pooled effect estimates, so the effectiveness of the interventions remains inconclusive. Additionally, the studies exhibited substantial risk of bias, which should be considered when interpreting these findings.

All interventions met the criteria of being community based, but they did not elaborate on the source of resources and the strategies that were implemented. We found that intervention strategies and resources were exogenous to implementation sites, with implications to scaling up and sustainability. We also found that most interventions targeted people living with HIV (stigmatized), taking the form of peer/mentor home-based programs. Notwithstanding their impact on internalized stigma [35], such interventions do not render much value to other forms, the basis on which stigma becomes anticipated and internalized [36]. There is thus a need to shift from individualized attention and focus more on the social and environmental influences of HIV-related stigma. Although individualized strategies have worked for chronic disease management [37], they appeal more to the restorative medical model [38] than the preventive health promotion model [39] and thus less likely to cause social change.

Community-based interventions against HIV-related stigma ought to be comprehensively designed to employ various strategies and to engage multiple categories of people to achieve population-level change. They also need to surpass agency for stigmatized individuals to also deconstruct entrenched historical and socio-cultural views in society that propagate stigma. This can take the form of durable educational programs in significant social settings such as schools where the majority of individuals can be reached during their formative years. The HIV-competent community framework [40] can guide the establishment of such interventions. Campbel et al. [40] define HIV-competent communities as settings where local people are more likely to collaborate on matters of HIV prevention and support for those living with HIV. The framework is consistent with the social-ecological systems theory in health promotion [41], the concept of social capital [42], and the postulates by Gofman [7] regarding the influence of the whole of society in the stigma process. Three strategies of the HIV competence framework: creating knowledge and skills, building safe spaces, and promoting a sense of ownership should thread through community interventions.

All interventions we reviewed involved the provision of information as a way of advancing knowledge for the target audience. However, there was no indication of community participation in the formulation of intervention strategies. It has been found that interventions in which community members are not fully engaged at all stages are costly and unsustainable [43]. The “bottom-up” approach in community participation leads to a sense of ownership and this creates positive behavior change [44]. We contend that developing such comprehensive interventions with high community engagement at all levels, from conceptualization to implementation and evaluation, takes time, but it is a worthwhile venture for durable outcomes.

Based on our cost and sustainability evaluation, most studies were found to be of low cost and sustainable, a vital feature of community-based behavioral interventions [45]. Minimizing costs is necessary regardless of the socio-economic context if community members are to continue with the intervention beyond the life of efficacy and effectiveness research projects [46]. However, working with community members in a participatory way to build a sense of ownership was not explicit in the studies reviewed. This threatens the continuity of even the low monetary cost interventions since community members incur opportunity costs.

Finally, the individualized approach we found in most of the studies involving people living with HIV as intervention recipients does not build safe social spaces. A safe social space [40] offers an opportunity for community members to break the silence around HIV and debunk entrenched stigmatizing attitudes, myths, and misconceptions. Building safe spaces requires interventions that involve all community members irrespective of their HIV status.

Quality of evidence, strengths, and limitations of the review

We restricted our search to studies published in English, and we did not include grey literature. It is possible that some effective community-based interventions that are not published and those reported in other languages could have been missed. However, the extensive search strategy we created, and the involvement of a variety of databases ensured that all studies that merited were included. The high methodological heterogeneity based on study designs, effect measures, analytical procedures, and reporting of findings did not allow for a meta-analysis to statistically synthesize findings to arrive at a pooled measure of effect. Additionally, our overall assessment found a high risk of bias in reviewed studies, largely due to non-randomization of participants during interventions. The findings should thus be interpreted with caution.

Conclusion

Community-based interventions appear to be effective in reducing HIV-related stigma. However, more robust randomized trials are needed to provide stronger evidence for this effect. Although these interventions have been multifariously developed in Sub-Saharan Africa, comprehensive strategies involving the stigmatized and the “stigmatizers” in a social change approach are lacking. The application of strategies without the involvement of community members in their design takes away a sense of community responsibility and this threatens the sustainability of such interventions.

Data availability

Not applicable.

Abbreviations

AIDS:

Acquired immune deficiency syndrome

HIV:

Human immunodeficiency virus

PLH:

People living with HIV

PRISMA:

Preferred Reporting Items of Systematic reviews and Meta-analysis

CFIR:

Consolidated Framework of Implementation Research

RoB:

Risk of bias

PLC:

People living close

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Acknowledgements

This work was supported by the Research and innovation fund of Mountains of the Moon University in the Faculty of Health Sciences.

Funding

This work was supported by the Research and innovation fund of Mountains of the Moon University in the Faculty of Health Sciences. The funders had no role in conducting the review.

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Authors and Affiliations

  1. Department of Public Health, Faculty of Health Sciences, Mountains of the Moon University, Fort Portal, Uganda

    Emmanuel Kimera & Maureen Andinda

  2. Department of Nursing and Midwifery, Faculty of Health Sciences, Mountains of the Moon University, Fort Portal, Uganda

    Linda Grace Alanyo, Irumba Pauline & Enos Masereka Mirembe

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  1. Emmanuel Kimera
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  2. Linda Grace Alanyo
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  3. Irumba Pauline
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Contributions

EK conceptualized the study, drafted the review protocol, conducted the database search, analyzed the data, and drafted the manuscript; LA conceptualized the study, drafted the review protocol, analyzed the data, and critically reviewed the manuscript; IP conceptualized the study, extracted data and critically reviewed the manuscript; AM conceptualized the study, extracted data, and critically reviewed the manuscript; EM conceptualized the study, assessed risk of bias, and critically reviewed the manuscript.

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Correspondence to Emmanuel Kimera.

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Kimera, E., Alanyo, L.G., Pauline, I. et al. Community-based interventions against HIV-related stigma: a systematic review of evidence in Sub-Saharan Africa. Syst Rev 14, 8 (2025). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s13643-024-02751-6

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  • DOI: https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s13643-024-02751-6

Keywords

Systematic Reviews

ISSN: 2046-4053