An Analysis of Approaches to Reduction of HIV Stigma across the World through educational interventions: A Scoping Review

Análisis de los enfoques para reducir el estigma del VIH en todo el mundo mediante intervenciones educativas: Una revisión de alcanza

Análise das abordagens para reduzir o estigma do HIV em nível global por meio de intervenções educacionais: uma análise de escopo

The HIV/AIDS pandemic has been a highly significant public health challenge in the world in the past decades.¹ In 2017, among the 36.9 million people infected with HIV worldwide, 25% were not informed about their disease, and less than 60% had taken any therapeutic measures.² The global goal is to put an end to the HIV pandemic by the end of 2030; as per the United Nations’ strategy, the set goals should be achieved by 2020. These goals include the following: 90% of people living with AIDS/HIV (PLWHA) ought to get informed of their serological status; they should receive treatment, and the viral load should drop in 90% of the PLWHA who are getting treatment.^3,4 However, various factors have acted as obstacles to achieving these goals; for instance, the stigma and discrimination associated with HIV have served as major challenges in this regard.⁵ Stigma is an undesirable or discredited characteristic attributed to a person; it also lowers the individual’s position in society’s view.⁶

Stigma is a sign of either shame or scandal; it impacts how others and the individual understand each other; besides, it questions the social identity and humanity of the individual.⁷ Stigma can destructively impact people; for instance, it can provoke family disputes and lead to social consequences and human rights violations.⁸ HIV or AIDS is a disease subject to stigma and discrimination caused by lack of knowledge, misinformation, fear of disease transmission, moral judgement about the behaviour of infected individuals and high-risk behaviours attributed to it, such as sexual contact, sex workers, and addiction. People with HIV are subject to various discriminatory behaviours such as rumours, blame, rejection, social isolation, unemployment, verbal and physical abuse, mistreatment and refusal to receive health care. ^9-11

The stigma associated with PLWHA falls into three categories, 1- applied or experienced, 2- anticipated or perceived, and 3- internalized stigma.^12,13 In applied or experienced stigma, the individual faces discrimination and stigma for infection with HIV; in anticipated or perceived stigma, PLWHA are expected to face stigma and discrimination from others; in internalized stigma, the infected people feel ashamed and have a negative image of themselves.¹⁴ The applied and anticipated stigmas cause refusal of doing tests, being afraid of disclosure of HIV status, lack of access to health and medical services and reluctance to apply for treatment;^15-17 internal stigma causes anxiety, stress, depression, lower self-efficacy, lower self-esteem, despair and in some cases suicide. Therefore, the stigma’s impact can often be more adverse than the disease.^18,19

To avoid stigma, PLWHA and their family members refrain from disclosing the status of their disease; it both increases the possibility of the disease spread and reduces PLWHA’s chances of seeking social support and receiving medical care.²⁰ Therefore, there is a growing need to overcome the stigma associated with HIV/AIDS worldwide.^21,22 There are different types of stigma associated with AIDS; thus, PLWHA are regularly exposed to stigma from society, health care providers, family members and themselves; thereby, most of the educational interventions done across the world have been carried out in these areas.²² Awareness of the interventions created for reducing stigma and applying this knowledge is essential. Therefore, the present study, aimed at determining the approaches and educational interventions for reducing the stigma associated with HIV worldwide, was done through a scoping review method.

This research was carried out with the scoping review method based on the guidelines of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses of PRISMA²³⁾ concerning the approaches to reducing the stigma caused by HIV in the world. All the international scientific databases, Cochrane, PubMed, Web of Science, Scopus, Embase and CINHAL, were searched for the papers published from early 2000 to the end of 2022; the search was done using the Mesh keywords: Social Stigma, Stigma, Shame, HIV, Acquired Immunodeficiency Syndrome, Health Personnel, Students, Medical And other keywords includein: self-stigma, social stigma, stigma reduction, discrimination, human Immunodeficiency Virus, AIDS, intervention, people living with HIV/AIDS, PLWHA, healthcare providers, people living close to HIV, PLC. Keywords were searched in the papers’ title, abstract, and full text singularly and collectively using OR and AND operators. The search syntax in PubMed was: (((((("Social Stigma"[Mesh]) OR "Stigma"[Mesh]) OR "Shame"[Mesh]) AND "HIV"[Mesh]) OR "Acquired Immunodeficiency Syndrome"[Mesh]) AND "Health Personnel"[Mesh]) OR "Students, Medical"[Mesh].

Inclusion and Exclusion Criteria. Inclusion criteria were organized by Problem or Population, Interventions/Exposure, Comparison, and Outcome (PI(E)CO): Population: People living with HIV, health care providers, and community. Intervention/exposure: stigma reduction approaches, economic, social, psychological, therapeutic, and religious supports. Result: reduction of stigma in patients with HIV. A group of studies were excluded from this research: they were conducted as observation, review, letter to the editor, case report, and cases series, plus those without any intervention, those with low quality, or those published in a language other than English.

Selection of Studies. The initial search provided 6852 relevant papers. Then, the resources were entered into Endnote software to organize the studies. The duplication of resources was checked with the software, and 1682 duplicates were omitted. Then, the full text of the papers was obtained, and their titles and abstracts were evaluated, and then, 4882 articles not related to the purpose of the systematic review were omitted. Finally, the full text of 288 related articles was reviewed, and 257 studies conducted using non-interventional methods were eliminated. A total of 31 related articles were admitted to the systematic review process (Figure 1).

Quality Assessment of Papers. The quality assessment of the articles was done using the Tool to assess risk of bias in systematic reviews (ROBIS) checklist. This checklist has seven sections Random sequence generation, Allocation concealment, Blinding of participants and personnel, Blinding of outcome assessment, incomplete outcome data, Selective reporting and other sources of bias, in each section the answers Lower risk of bias, Higher risk of bias or unclear risk of bias can be selected.²⁴

Data Extraction. Quality assessment and extraction of information were done independently by two researchers trained in the examination, quality assessment and evaluation of papers. Accordingly, the researchers investigated the title and abstract of the papers meeting the inclusion criteria for the systematic review. If the articles were thoroughly relevant, their full text was evaluated. If two researchers rejected an article, the reason for the rejection was mentioned. In cases of disagreement between the two researchers, the article was assessed by a third person. In order to extract data, a checklist was used; it covered the corresponding author’s profile, the place and time of the paper’s publication, the type of intervention, and the two groups of intervention and control.

Figure 1
The PRISMA flow diagram

The present research investigated 31 interventional studies carried out from 2008 to 2020 on the reduction of stigma across the world. Among the conducted studies, 9 were carried out on community-based reduction of stigma, 11 were done on medical department employees and students, and 11 were interventions covering individuals with HIV. The specifications of the reviewed articles are presented in Table 1 and the results of the quality assessment of the articles are presented in Table 2.

Table 1
The features of the papers admitted to the systematic review

Table 2
Evaluation of the quality of the articles by level of risk of bias in included articles in the systematic review

Overall, the findings illustrated that the stigma associated with HIV causes adverse impacts on the patients’ physical, mental and social health and acts as a significant obstacle to the prevention, control and treatment of this disease. In order to achieve control of the HIV epidemic, the reduction of stigma is emphasized across the world. The review of the studies shows that, with regard to the types of the stigma associated with HIV and the conducted evaluations, interventions have been carried out at three levels of society, healthcare service providers and patients who have HIV and their families; the following elaborates on these interventions:

PLWH-based Interventions

As per findings, the central point about reducing stigma in people with HIV is empowerment, allaying shame and fear caused by disclosure, treatment and presence in communities. Thus, these goals will be achievable via conducting intervention programs like education, preparing conditions for the presence of PLWHs in the community and their employment, and the acceptance and acceptability of these people. According to the results of the conducted studies, approaches to the reduction of stigma in PLWH included: 1- Web-based interventions and formation of mass media campaigns; 2- Sharing information and experiences and educational videos about HIV, such as programs about getting tested, safer intercourses, dating, social relationships, healthy living and living skills among PLWHs; 3- Organizing workshops and educational and functional campaigns about HIV covering positive living, easing fear and reduction of isolation, coping with stigma and applying for treatment and participation of PLWHs in these programs; 4- Living intervention and aiding PLWH’s occupational activities; 5- Forming a community centre for reduction of the stigma associated with PLWH and provision of supports by organizations, leaders and popular mobilization; 6- Educating PLCs about the reduction of stigma, increasing positive interactions and management of the relationship. (Figure 2)

Figure 2
Concept map, approaches to reduce the stigma caused by HIV

According to the results of the present systematic review, interventions of stigma reduction working based on populations, providers of health services and PLWHs covered the elimination of the shame and concealment of the disease through normalizing the malady and allaying fear through education and intervention programs in the society; opening up opportunities for the provision of economic, social and cultural supports by the communities and their prominent members; education provided by health staff, religious leaders and notable people about HIV and taking necessary measures for the participation of the infected people in religious programs and meetings; formation of associations that support PLWH plus the employment of radio, television and web-based applications to educate the general society of PLC and PLWH; running workshops and educational and operational campaigns related to HIV; living interventions and facilitating the employment of PLWH; forming associations for the reduction of the stigma associated with PLWH; and supports provided by organizations, leaders and popular mobilization. In a review study by Andersson et al., PLWHA-based interventions included radio educational programs, provision of home-based health and medical care and family support, recruitment of affected people to income-generating activities, understanding HIV, strong interpersonal relationships, management of conflict and discrimination, setting up peer support groups, building small support teams, education, group-based behavioural interventions and social support. These factors reduced stigma and enhanced the living quality of these people.⁵³ In the review study by Ma et al., which dealt with the interventions of stigma reduction in PLWHA and their families, interventions fell into five categories: 1- Psycho-educational interventions, 2- Supportive interventions for encouraging patients to comply with treatment, 3- Psychotherapy interventions; 4- Narrative interventions; and, 5- Social partnership interventions.

The following studies covered psycho-educational interventions: education about safe behaviour, management of negative emotions, building support networks, acquiring skills of stress alleviation, reduction of stigma, calming down, anger management, decision-making skills, self-efficacy and social relationships. In terms of compliance with treatment, the goals were removing obstacles to treatment, improving access to treatment, and providing financial, nutritional, informational, and emotional support. In the area of psychotherapy, people underwent psychological and behavioural treatments. Concerning the narrative, the patients explained how they contracted the disease and the events they encountered; finally, the interventions conducted regarding social participation stressed the interaction among PLWHA, family and community. In their review, Feyissa et al.² investigated the approaches to stigma reduction based on healthcare providers. Therefore, the components of stigma reduction fall into five categories: information-based, skills-building, structural, contact-based and biomedical interventions. These interventions were conducted as approaches providing information verbally and in writing through speeches, putting up banners and printing posters about acquiring further information on HIV and reducing stigma; a structural approach including the availability of safety and prevention equipment and related instructions, interaction strategies like activities and encouraging health workers and PLWHA to communicate; and interventions including testing, treatment and access to health care. In Mak et al. meta-analysis study, educational interventions had led to a decrease in knowledge and negative attitudes towards HIV and the caused stigma.²²

Thapa et al.⁵⁵ assessed a conceptual framework to examine the impact of interventions conducted to reduce HIV stigma on HIV testing. Therefore, the interventions were divided into four approaches: building awareness and knowledge, effect on normative behaviour, provision of support, and drafting regulatory laws. Within the awareness-building approach, effective HIV-related knowledge and norms are expanded in PWLHA and community members. In the standard behaviour approach, the attitudes and behaviours that cause stigma and the views of members of society about HIV are changed (normalized), and subsequently, more people are attracted to taking HIV tests. The approach of supporting and developing regulatory law strategies illustrates that various social and individual factors impact the mechanisms of stigma reduction; furthermore, social and legal interventions influence the implementation of the items mentioned above.⁵⁴ In their review, Stangl et al.⁵⁶ divided the factors affecting the reduction of stigma into four areas: 1- Information-based devices such as brochures, posters, and lectures; 2) Skill generation such as participatory learning sessions or role-playing to lower the rate of negative knowledge and attitudes; 3) Counselling and supporting like building support groups for PLHIV; and, 4) Communication with suffering groups like the interaction between PLHIV and the public. The review study by Mahajan et al. about the stigma caused by HIV maintains that stigma is widely used as a facilitator for the spread of the HIV epidemic; however, facilitating the provision of preventive, laboratory, and antiretroviral treatment services prevents stigma. Therefore, interventions should be carried out in the four areas of stigma and high-risk behaviour, stigma and biomedical prevention, stigma and prevention of mother-to-child transmission, and stigma and testing and treatment.

Concerning stigma and risky behaviour, the suffering people subject to discrimination and stigma are more likely to engage in unsafe sex, risky behaviour, and concealing the disease in their sexual relationships. Thus, interventions should focus on the role of social inequalities, sexual and racial discrimination, and the reduction of risky behaviours. In the biomedical field, measures such as adult male circumcision, prevention before exposure to the virus and infection with HIV, and the use of microbicides and vaccines are the measures that restrict the spread of the epidemic. Nonetheless, the above measures, such as HIV vaccine testing and male circumcision in societies, which attach the stigma of infection to these people, lead to people’s unwillingness to comply with these principles. Regarding the prevention of the mother-to-child transmission of disease, pregnant women do not want to be tested and disclose their disease status as they are afraid of the stigma, discrimination and violence from their husbands and families. Therefore, it is necessary to educate the community, pregnant women and women of reproductive age about the services provided to prevent the mother-to-fetus transmission of the disease so that the acceptability of services is improved and the stigma is reduced. According to the treatment and testing approach, an obstacle to taking an HIV test and its treatment is stigma. But on the other hand, the lack of proper access to antiretroviral treatment in countries with limited resources and the lack of facilitation of testing act as the actual driver of not taking tests and applying for treatment. For instance, people with advanced HIV/AIDS who have clinical symptoms can no longer work; they also experience serious stigma. Therefore, treatment of these people and reduction of clinical symptoms allow these people to return to a productive social and financial life. Overall, the facilitation of HIV testing and treatment can turn this disease into a curable, chronic disease; the stigma caused by it can also be reduce. In addition, it is widely acknowledged that education plays a crucial role in mitigating the stigma surrounding HIV globally. Therefore, various approaches should be employed to present the message in different contexts. The target groups can also affect these conditions; that is, the type of training can differ depending on the illness and circumstances at that particular time. As a result, virtual education should be given more importance during the COVID-19 pandemic and effective methods should be used to implement it, such as developing an easily navigable platform for the general public. Previous research has shown that conditions prior to the pandemic were different. because of the numerous impacts COVID-19 has had on practically every organ in the body, including the liver, kidneys, lungs, eyes, and so forth. Virtual classes are important because, quite naturally, people's fear of getting this virus can make them avoid attending training sessions in person.^57-65

In general, the conducted studies have introduced various approaches to reducing the stigma caused by HIV; they also evaluated these approaches as interventions in different communities. Having an objective assessment of the condition and performance of AIDS patients and the attitude of nurses in relation to the insight, customs and norms of patients with AIDS is effective in making the right decisions in interacting with patients. Due to limitations in time, resources and performance, nurses need to benefit from the best evidence-based resources to improve their skills, and the results of review studies are very effective to improve knowledge and implement appropriate approaches to reduce stigma. The present research elaborated on these interventions and summarized them. However, the stigma cannot be controlled only by intervention in a specific group or population; diverse factors influence it in communities, families, suffering people and the policies related to prevention, diagnosis and treatment facilities. Besides, complex relationships exist among them, and as noted earlier, these factors have mutual effects in many cases. People with HIV will be deprived of a normal life, high-quality living, life expectancy and treatment enjoyed by all people suffering from other chronic diseases. The prevention and control of this epidemic will not be possible unless the interventions described above are implemented as a general policy in societies.

Limitations. Limitations of the study include 1- Not using the same tool to check the reduction of stigma in studies; 2- Examining populations with different economic and social conditions; 3- Selection of diverse control groups in studies; and 4- Conduction of studies in different times, and the possibility of the effect of therapeutic, cultural and social developments on the studies.

Conclusion. The stigma associated with HIV is a significant obstacle to treatment, life expectancy and living quality of patients. Therefore, the education of society, healthcare service providers, and afflicted people can reduce the stigma caused by this disease and raise the living quality of patients. Furthermore, economic, social, cultural, and psychological support can reduce the stigma of this disease and increase the living quality of the patients. Thus, it is recommended to conduct educational interventions within laws, instructions and programs in communities, health and medical and educational centres so that people suffering from this disease can enjoy a quality life.

This study is the result of Hamidah Ebrahimi's nursing phd thesis and was approved by the Health Vice-Chancellor of Shahid Beheshti University of Medical Sciences on 1401/5/18 with ethics code number IR.SBMU.PHARMACY.REC.1401.098