Utilization of Social Media for the Prevention and Control of HIV/AIDS: A Scoping Review

Introduction

Human immunodeficiency virus (HIV) infection remains a major global public health issue, although the estimated number of new infections decreased in the last decade from 2.6 million in 2009 to 1.5 million in 2020.¹ The COVID-19 pandemic has impacted the continuity of HIV services and efforts to halt the HIV epidemic to meet the 2030 goals set by UNAIDS.² In a 2019–2020 survey of 502 health facilities in 32 Asian and African countries, the Global Fund reported a 41% decrease in the HIV testing rate during the COVID-19 pandemic.³ In addition, access to and utilization of HIV referrals and testing services for the diagnosis of HIV or sexually transmitted infections decreased 37% in 2020 compared in 2019.³ UNAIDS recommends that HIV health services should continue to be available for people with and at risk of HIV, including people with access to prevention, care, treatment, and support.⁴ Magnani et al reported that COVID-19 not only affects the economy but also provides HIV/AIDS-related health care services such as outreach to at-risk groups, HIV testing, and treatment initiation.⁵ Disruptions in HIV service utilization need to be mitigated and recovered to ensure that prevention, care, treatment, and support for People Living with HIV (PLWH) are continuously available.

On the other hand, the COVID-19 pandemic has accelerated changes in behaviors and activities from in-person and face-to-face contact to virtual rooms or digital contact.⁶ The advancement of information and communication technology provides more opportunities for communication and connection, including through social media. Social media is a type of digital communication and interaction media produced by Web 2.0 technology development that facilitates interactions among people through which they create, share, or exchange information and ideas online in virtual communities and in virtual networks.⁷ Public participation in social media has increased sharply in recent decades and has gained increased popularity, particularly among young adults.^8,9 The COVID-19 pandemic has amplified the use of social media and digital platforms to communicate, share, and stay connected to each other. Even in the post-pandemic era, social media and digital technologies continue to develop and are present in almost all aspects of human life. In the public health sector, social media has been used for various purposes and goals, such as increasing knowledge of services, promoting specific behaviors, raising awareness of general health issues, fighting stigma, supporting growth and mutual support networks among at-risk groups, and providing answers or responding to particular questions or queries related to health matters.¹⁰ Health researchers have also increasingly used the social media has also for a range of professional purposes, including participant recruitment, content analysis, promotion of academic research, data mining, intervention or campaign implementation, engagement in collaboration, data collection, reporting research findings, accessing scientific resources, and information health management.¹¹ In the field of HIV research, using social media has covered various purposes, such as disseminating HIV information, encouraging HIV testing, and promoting ART adherence.¹² Social media development is growing rapidly, resulting in large pools of data that can be used to develop innovative interventions addressing HIV prevention and control. To date, the use of social media for HIV prevention and control has not been comprehensively mapped and characterized. Therefore, this paper aims to identify, explore, and summarize the current evidence of literature on the utilization of social media for the prevention and control of HIV. It is expected that the findings of this report will be helpful for healthcare professionals as well as health researchers concerned with this topic.

Method

Study Design

A scoping review was conducted to identify key gaps in the literature and to broadly scope the existing scientific and gray literature to provide a greater understanding of key constructs in HIV prevention and control interventions using social media. We developed the scoping review protocol following the methodological framework outlined by Arksey and O’Malley.¹³ This five-stage approach is described below. To ensure transparency and methodological rigor throughout this scoping review, this protocol followed the Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. The following research question was the foundation for this scoping review: what is known from the published literature and gray literature about the utilization of social media in relation to the prevention and control of HIV/AIDS?

Eligibility Criteria

All the research studies (experimental, quasi-experimental, observational, qualitative) and gray literature (guidelines, conference papers and proceedings, government reports, community agency/group reports, editorials, policy documents, dissertation) containing concepts and information about social media used in the prevention and control of HIV/AIDS were included. We restricted the studies to those published between January 1, 2012, and December 31, 2021. The population studies were focused on people living with HIV and/or AIDS or populations at risk for HIV infection, including the general youth population, Men who Have Sex with Men (MSM), transgender, Commercial Sex Worker (CSW), and Persons who Inject Drugs (PWID). We excluded studies on HIV/AIDS populations aged younger than 16 years. We also restricted the language of the studies to English.

Search Strategy

We developed preliminary search strategies in consultation with an experienced librarian in the Taubman Health Science Library at the University of Michigan. The search strategy draws upon relevant terms or similar key words that are available in MeSH terms. Supplemental strategies were used to identify relevant systematic reviews that were excluded; however, the reference lists/included studies were reviewed, and all cited and cited references of all included articles were reviewed after the full-text screening. We searched from the following electronic databases: PubMed, Embase, CINAHL Complete (EBSCO), PsycInfo (EBSCO), Scopus, and WOS (Science Citation Index Expanded (SCI-EXPANDED). The syntax was adjusted according to the needs of each database. The search strategy and keyword of each data bases is shown in Supplementary S1.

Study Selection

All retrieved studies were screened, and eligibility was determined based on the inclusion and exclusion criteria at the title and abstract levels. The eligibility criteria were continuously refined to ensure that all the criteria were met. The records selection process involved two layers of screening: (1) title and abstract and (2) full-text review. In both stages, two reviewers independently reviewed the articles and determined eligibility using the set inclusion/exclusion criteria. Throughout this process, both reviewers used Rayyan, a web online application tool for systematic reviews.¹⁴ The search strategy results and eligibility screening process are reported in detail using the PRISMA flow diagram for scoping reviews.¹⁵ The combined database search yielded 1519 records, 734 of which were removed prior to review. The title and abstract were screened based on the inclusion/exclusion criteria, and 78 records were retrieved for full-text assessment. The 23 final articles were deemed eligible for inclusion in the scooping review. A flowchart of the study selection process is provided in Figure 1.

Figure 1 PRISMA flow diagram. Adapted from Tricco AC, Lillie E, Zarin W, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): checklist and Explanation. Ann Intern Med. 2018;169(7):467–473. Creative Commons.15

Data Extraction

Based on our research question, a standardized charting form was developed to capture relevant data in a matrix table The following information was extracted from each article and entered into the form:

1. Descriptive information about the studies; authors, year of publication, country of origin, and study design
2. Type of social media used
3. Outcomes and conclusion of the studies

Data Analysis and Synthesis

The data extracted from the data charting form were then explored following the thematic qualitative analysis method. Thematic analysis is a method for analyzing qualitative data that entails searching across a dataset to identify, analyze, and report repeated patterns.¹⁶ This analysis comprised six steps: 1) familiarizing with the data, 2) generating initial codes, 3) searching for themes, 4) reviewing themes, 5) defining and naming themes, and 6) producing the report.

Results

Study Included in the Study

A total of 790 unique articles were screened at the title and abstract level, and 78 were screened at the full-text level. Twenty-three articles met the eligibility criteria and were included in this scoping review (see Figure 1). All the included articles were original quantitative research articles. The study designs of the articles were as follows: randomized control trial/experimental (n = 10),^17–26 cross-sectional survey (n = 8),^27–34 retrospective study (n = 2),^35,36 prospective study (n = 1),³⁷ comparative study (n=1),³⁸ and case study (n=1). The studies were carried out across 7 different countries, but the majority were conducted in the US (n = 12). Among the World Bank income groups (2021), 10 studies involved individuals from lower-middle income countries, and 13 studies involved individuals from high-income countries. All the included articles were published between 2012 and 2021, with the majority published in 2020 (n = 6). A summary of the publications included in this review is presented in Table 1.

Table 1 Summary of Publications Included in the Review (n = 23)

Use of Social Media for Sharing Information, Seeking Support, and Networking

Among the 23 included articles, 11 reported using social media mainly for surveying health or risky behavior related to HIV. Social media was utilized by users for sharing information, seeking information and support, and networking (Table 2). The types of social media used to obtain the data included social network communities such as Facebook, Google+, Reddit, and LinkedIn; microblogs such as Twitter; multimedia such as Instagram and YouTube; Skype; social messaging apps such as WeChat and WhatsApp; and unidentified networking sites or apps such as MySpace, Adam4Adam, ManHunt, Craigslist, BGC live, Grindr, ooVoo, Blued, and Tagged. Several studies have used multiple types of social media to collect data. The subjects involved in these studies were mostly MSM; the rest were health providers or community popular opinion leaders; and the texts were posted by the general public. The purpose of the survey was to determine the characteristics, prevalence, and patterns of various HIV-related social media posts to understand social media use and how it may be related to HIV risk behaviors. The findings of these studies highlighted the linkage between social media posts, tweets, or messages and patterns of HIV-related risk behaviors and sexual health,^28,33,36 and an increase in behavioral risk conversations was associated with HIV incidence.^35,40 Social media users used social media to arrange sexual hookups, seek sexual partners, and exchange sex for money, clothes, or drugs.^17,34 Social media was also proven to be an effective means to learn clinical information and improve HIV-related knowledge, as reported by peer leaders and health care providers.^21,31 In addition, studies have shown that social media posts could be used as a surveillance tool for identifying depressive emotion signs, opioid use disorders, and overdose for high-risk and hard-to-access populations.^28,30,35

Table 2 Use of Social Media for Sharing Information, Seeking Support, and Networking

Use of Social Media to Deliver Health Interventions to Change Health Behaviors

Among the 23 reviewed articles, 12 were related to interventional studies that targeted controlling for outcome variables. The contents of the social media health interventions were mostly related to sexual health, HIV prevention, and HIV testing. Two intervention studies related to recruitment were included in the Randomize Control Trial (RCT), and the rest related to retention in care and stress management. The outcomes of the reviewed studies were mostly related to condom usage to promote safe sex practices, followed by HIV knowledge, behavioral skills, retention in care, HIV testing, and depressive symptoms. The included studies reported significant findings in improving the studied outcomes; however, study limitations should be acknowledged to raise awareness for future research. Several of the study limitations included limited generalizability, reliance on self-report instruments, long retention times, and sample issues (Table 3).

Table 3 Content of Social Media Intervention, Study Outcomes, and Limitations

Discussion

The main purpose of this study was to review the utilization of social media for the prevention and control of HIV. This review describes the broad usage of social media related to HIV prevention and treatment for the global population, especially for MSM, youth, and individuals with HIV or who are at risk for HIV infection. To our knowledge, this is the first review to evaluate the state of research on social media utilization for HIV prevention and control in the context of the general population; these methods are sustainable and cost-effective ways to increase behavioral change and may also reach hidden populations.^41,42

Most related studies have used social network sites (eg, Facebook pages and Twitter) as tools for seeking and sharing information and support. Facebook is the most widely used online social network and could be highly relevant for people who seek and share information about health, which influences health behavior.⁴³ Facebook has exceeded 2.98 billion monthly active users as of the first quarter of 2023.⁴⁴ Facebook has been used by several health organizations to brand, advertise, and promote health.⁴⁵ Despite Facebook having great potential as a communication tool, understanding the features offered by Facebook and its benefits to organizations and users is needed. Facebook and YouTube have been found to be effective at facilitating intervention and education to improve health behavior, and Twitter and Instagram have been used more to observe trends in changes in health behavior.⁴⁶ One review study also suggested that Facebook was effective as a social network intervention for increasing physical activity in young Chinese adults.⁴⁷

The internet and social media have been increasingly utilized by the population, particularly youth worldwide,⁴⁸ including in low-middle income nations. The Pew Research Center reported that internet and social media use have continued to rise in low- and middle-income countries from 2013 to 2018, while in advanced economies, countries have remained flat.⁴⁹ Hagg suggested that social media has been used for health-related purposes and has been used to facilitate disease surveillance, mass communication, health education, knowledge translation, and collaboration among health providers in low- and middle-income countries.⁵⁰ To the purpose of HIV prevention, social media offers the ability to deliver HIV prevention programs to young people in a cost-effective manner through a medium they already utilize. Social media platforms enable public health campaigns to reach more varied audiences, reduce total costs, create possibilities for recurrent exposure to messages, collect real-time feedback, and promote direct engagement with messaging materials.⁵¹

Studies have demonstrated that social media could encourage engagement.⁵² According to our review of the literature, social media could increase social support and HIV prevention and control information. This increase in health access is especially important for PLWH, who might encounter barriers to in-person care or prevention, as well as rural populations or young MSM.^53,54 For example, people who engage in social media use in relation to HIV testing might receive extensive information about the testing site, hours of operation, and available services, which may encourage HIV testing.⁵⁵ In the context of Pre-exposure prophylaxis (PrEP), social media has promoted and encouraged PrEP usage, which influenced HIV-related tweets about other messages on other social media platforms and provided a variety of methods for communicating and disseminating accurate PrEP information and services to certain groups.^29,56

As a challenge, numerous stakeholders, including patients, healthcare professionals, the general population, and government and nongovernmental groups, are increasingly using social media for health-related objectives in low- and middle-income countries (LMCIs). In LMICs, governmental and nongovernmental groups have been the primary providers of social media for health, although end-users were often young or marginalized.⁵⁰

With the rise of digital and mobile technologies, interactions on a large scale became easier for individuals than ever before. One individual can now speak to many, and instant feedback is a possibility. With social networks in digital spaces, there are increased possibilities to promote the prevention and control of HIV/AIDS massively, which could be integrated into a wider community strategy. One of the great promises of social media interventions is the potential to reach geographically diverse and isolated individuals.⁵⁷

Considering that HIV prevention and control are influenced by multiple variables, we also assessed the intervention’s effect on these variables. The presence of people on social media may be related to avoiding stigma, even though the social media intervention did not directly address this variable. Given that stigma is associated with HIV risk behavior, such as homosexuality, our findings offer relevant directions for further research. Importantly, participation in social media was related to an increase in knowledge regarding sex and drug use risks but was still insufficient because of self-reported willingness on self-efficacy for change.

Study Limitations

This review has its own limitations. First, it was limited to English-language publications and could not include foreign-language studies. Second, the majority of the included studies were descriptive and exploratory. Finally, due to the diversity of intervention types and outcome measures, we found it difficult to combine certain data. Furthermore, further research should investigate the effects of social media interventions through clinical trials.

Conclusion

Social media has been widely used for sharing information, seeking information and support, and networking. Facebook was the most type of social media used to extend a social network community. Activities in social media have produced a large amount of data that can be analyzed and utilized to understand people’s health behavior. The contents of the social media health interventions were mostly related to sexual health, HIV prevention, and HIV testing. Social media-based health interventions could help both health care providers and health researchers to develop interventions and initiatives to improve the health outcomes of hard-to-reach populations, such as PLWH. Although a number of studies in this field have been growing recently, much evidence regarding the utilization of social media to address HIV prevention and control issues as well as to improve the health outcome of this particular population is still needed.