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HIV remains a persistent health problem in the United States, especially among women. Approved in 2012, HIV pre-exposure prophylaxis (PrEP) is a daily pill or bimonthly injection that can be taken by individuals at increased risk of contracting HIV to reduce their risk of new infection. Women who are at risk of HIV face numerous barriers to HIV services and information, underscoring the critical need for strategies to increase awareness of evidence-based HIV prevention methods, such as HIV PrEP, among women.
We aimed to identify historical trends in the use of Twitter hashtags specific to women and HIV PrEP and explore content about women and PrEP shared through Twitter.
This was a qualitative descriptive study using a purposive sample of tweets containing hashtags related to women and HIV PrEP from 2009 to 2022. Tweets were collected via Twitter’s API. Each Twitter user profile, tweet, and related links were coded using content analysis, guided by the framework of the Health Belief Model (HBM) to generate results. We used a factor analysis to identify salient clusters of tweets.
A total of 1256 tweets from 396 unique users were relevant to our study focus of content about PrEP specifically for women (1256/2908, 43.2% of eligible tweets). We found that this sample of tweets was posted mostly by organizations. The 2 largest groups of individual users were activists and advocates (61/396, 15.4%) and personal users (54/396, 13.6%). Among individual users, most were female (100/166, 60%) and American (256/396, 64.6%). The earliest relevant tweet in our sample was posted in mid-2014 and the number of tweets significantly decreased after 2018. We found that 61% (496/820) of relevant tweets contained links to informational websites intended to provide guidance and resources or promote access to PrEP. Most tweets specifically targeted people of color, including through the use of imagery and symbolism. In addition to inclusive imagery, our factor analysis indicated that more than a third of tweets were intended to share information and promote PrEP to people of color. Less than half of tweets contained any HBM concepts, and only a few contained cues to action. Lastly, while our sample included only tweets relevant to women, we found that the tweets directed to lesbian, gay, bisexual, transgender, queer (LGBTQ) audiences received the highest levels of audience engagement.
These findings point to several areas for improvement in future social media campaigns directed at women about PrEP. First, future posts would benefit from including more theoretical constructs, such as self-efficacy and cues to action. Second, organizations posting on Twitter should continue to broaden their audience and followers to reach more people. Lastly, tweets should leverage the momentum and strategies used by the LGBTQ community to reach broader audiences and destigmatize PrEP use across all communities.
HIV remains a persistent health problem in the United States, with almost 37,000 new diagnoses in 2019 [
HIV pre-exposure prophylaxis (PrEP) is a daily pill or bimonthly injection that can be taken by individuals at increased risk of contracting HIV to reduce their risk of new infection. Approved by the US Food and Drug Administration in 2012, PrEP is an effective and integral tool in ending the HIV epidemic. Despite a decade having passed since its approval, serious disparities still exist in PrEP uptake, especially among women. While women make up a significant portion of newly infected people, only 10% of eligible women are prescribed PrEP [
Increasing awareness of HIV PrEP is a vital first step to bolstering uptake. However, awareness of HIV PrEP among US women is low [
Social media has emerged as an important source of information about PrEP and a space where people share health information and advice. Twitter is a platform containing a rich source of information, where researchers can monitor public perceptions and opinions about health services, medications, and treatments [
Health communication studies about PrEP content directly targeted at women on social media have been limited [
This study aimed to identify historical trends in the use of Twitter hashtags specific to women and HIV PrEP and explore content about women and PrEP shared through Twitter. In addition, we examined characteristics of linked content, user engagement, and theoretical constructs from the Health Belief Model (HBM) present in identified tweets.
As this work involved publicly available Twitter data and did not include human-subjects research, it was exempt from ethical board review.
In this descriptive study, we explored Twitter posts about HIV PrEP related to and directly targeting women. All available tweets were collected via Twitter’s application programing interface (API) using the
Data collection and sampling. All tweets collected were created between June 3, 2009, and April 14, 2022. API: application programming interface; PrEP: pre-exposure prophylaxis.
The codebook (
As the first step in the coding process, all coders reviewed each tweet for its relevance to women and to PrEP. Tweets that were not relevant to women or PrEP or that did not include enough information were excluded from the sample.
Relevant versus nonrelevant tweets. PrEP: pre-exposure prophylaxis.
A separate codebook was developed for user information. User type was stratified into 2 broad groups with subcategories: individual (ie, self-identified activists, health professionals, and researchers) or organizational (ie, nonprofit or health care organizations). When provided, we also coded for user location at the country level. After determining that most users originated in the United States, we also documented specific localities or states, if that information was provided. For individual Twitter users, we coded perceived gender, sexual orientation, and race based on self-reported text descriptions and user profile images. “Black” or “Hispanic” were selected only if users explicitly self-identified with these terms; otherwise, “person of color” was selected based on profile pictures. If the user did not self-identify, coders documented their perceptions of user characteristics.
Following codebook development, the full sample of tweets was coded by a group of 5 coders (SK, AA, SM, AB, and MK) using Qualtrics (Qualtrics International Inc). A total of 20% of the sample (n=578) was coded by at least 2 team members to ensure interrater reliability as measured based on percentage agreement [
Descriptive statistics were generated for the coded characteristics of relevant tweets, informational websites, and users, as well as for associated metadata (eg, followers and retweets). All characteristics were coded as binary or categorical variables. We also created an aggregate variable of audience engagement comprising total retweets, likes, and quotes. For tweets, we calculated mean audience engagement values for selected tweet content codes. We then used exploratory factor analysis of coded tweet text and image characteristics to identify latent thematic dimensions or factors across the different characteristics of tweets. Factors with eigenvalues (λ) greater than or equal to 1.0 were retained. We determined characteristics with factor loadings greater than or equal to 0.25 to be salient. All statistical analyses were conducted in Stata/SE (version 15.1; StataCorp LLC).
Tweet content characteristics shown as univariate and bivariate descriptive statistics for relevant tweets (n=1256). Engagement is an aggregate measure that includes total quotes, retweets, and likes.
Category/characteristics | Tweets, n (%) | Tweet engagement | ||
Median | Mean (SD) | |||
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Cisgender women | 1023 (81.4) | 4 | 13.4 (38.0) |
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Black people | 304 (24.2) | 4 | 13.1 (29.0) |
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People of color | 276 (22) | 5 | 16.0 (35.0) |
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None/undetermined | 102 (8.1) | 5 | 14.0 (21.8) |
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Transgender women | 108 (8.6) | 6 | 29.6 (94.5) |
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Health professionals | 103 (8.2) | 5 | 14.4 (31.8) |
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Heterosexual couples | 94 (7.5) | 4 | 10.6 (21.6) |
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Lesbian, gay, bisexual, transgender, queer | 68 (5.4) | 7 | 37.5 (116.3) |
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Serodiscordant couples | 64 (5.1) | 3 | 4.8 (7.1) |
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Benefits | 395 (31.4) | 4 | 14.8 (52.3) |
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Self-efficacy | 281 (22.4) | 4 | 12.5 (25.8) |
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Risk of HIV/AIDS | 176 (14) | 4 | 9.6 (20.2) |
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Barriers to PrEPa | 82 (6.5) | 4 | 15.2 (26.6) |
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Cues to action | 63 (5) | 5 | 11.8 (18.6) |
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Promoting PrEP use and access | 760 (60.5) | 5 | 14.6 (42.6) |
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Sharing information/resources | 700 (55.7) | 4 | 12.5 (25.7) |
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Providing event details | 205 (16.3) | 5 | 10.8 (15.6) |
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Describing personal narrative/experience | 79 (6.3) | 3 | 8.9 (16.0) |
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Raising PrEP awareness | 78 (6.2) | 4 | 14.5 (34.0) |
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Image plus text | 606 (48.2) | 6 | 18.7 (47.6) |
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Tweet only | 548 (43.6) | 6 | 7.3 (4.2) |
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Video | 99 (7.9) | 4 | 14.8 (27.4) |
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Image only | 3 (0.2) | 3 | 7.2 (13.8) |
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Person present | 657 (92.8) | 5 | 17.7 (46.2) |
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Photograph | 535 (75.6) | 6 | 16.2 (29.2) |
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None | 333 (47) | 3 | 7.6 (15.0) |
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Campaign slogan | 145 (20.5) | 6 | 18.0 (33.5) |
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PrEP pill/medication | 126 (17.8) | 4 | 17.3 (83.1) |
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Marketing/promotional materials | 106 (15) | 15.5 | 27.4 (33.8) |
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Other | 103 (14.5) | 4.5 | 11.9 (20.4) |
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Conference presentations and materials | 84 (11.9) | 6 | 12.4 (15.6) |
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Web address URL | 80 (11.3) | 5.5 | 19.5 (35.1) |
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Female | 639 (97.3) | 5 | 17.5 (46.5) |
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Person of color | 464 (70.6) | 5 | 18.6 (52.5) |
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Male | 290 (44.1) | 6 | 17.2 (30.2) |
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Black | 287 (43.7) | 5 | 15.0 (28.6) |
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White | 264 (40.2) | 6 | 20.4 (33.5) |
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Male plus female | 244 (37.1) | 6 | 17.0 (31.2) |
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Other gender | 70 (10.7) | 5 | 32.4 (114.2) |
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Hispanic | 62 (9.4) | 4.5 | 19.1 (41.0) |
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Cartoon character/mascot | 133 (20.2) | 4.5 | 17.2 (28.3) |
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Health care worker | 123 (18.7) | 5 | 15.9 (28.2) |
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Lesbian, gay, bisexual, transgender, queer | 114 (17.4) | 6 | 31.1 (92.5) |
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Other | 82 (12.5) | 5 | 14.5 (18.1) |
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Journalist | 46 (7) | 5.5 | 16.2 (22.4) |
aPrEP: pre-exposure prophylaxis.
Timeline of relevant tweets from 2014 to 2022 (n=1256).
Year | Tweets, n |
2014 | 3 |
2015 | 305 |
2016 | 204 |
2017 | 269 |
2018 | 113 |
2019 | 61 |
2020 | 106 |
2021 | 99 |
Most relevant tweets were directed toward a target audience of cisgender women (1023/1256, 81.4%). One-third were directed toward people of color (429/1256, 34.2%), including almost a quarter specifically featuring people who are Black (304/1256, 24.2%). Nearly half of tweets (618/1256, 49.2%) contained HBM constructs, such as promoting the benefits of PrEP (395/1256, 31.4%) or self-efficacy to use PrEP (281/1256, 22.4%). Only 5% (63/1256) of tweets contained cues to action. The main purpose of most tweets was to promote PrEP use and access (760/1256, 60.5%) or sharing of information and resources (700/1256, 55.7%). We also observed that tweets had among the highest levels of engagement from audiences when they were directed toward transgender women (29.6 engagements/tweet versus 16.1 average) and lesbian, gay, bisexual, transgender or queer (LGBTQ) individuals (37.5 engagements/tweet). Engagement with tweets was stronger when tweets contained imagery or videos, had a person present in the image, and contained a campaign slogan.
Of the 396 unique users who created relevant tweets in our sample, most were organizations rather than individuals (230/396, 58.1% and 166/3964, 1.9%, respectively;
Coded attributes for users of relevant tweets (n=396 users).
Category/characteristics | Users, n (%) | |||
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166 (41.9) | ||
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Activist/advocate | 61 (15.4) | |
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Personal/other | 54 (13.6) | |
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Health professional | 30 (7.6) | |
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Researcher/academic | 21 (5.3) | |
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230 (58.1) | ||
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Advocacy/nonprofit organization | 120 (30.3) | |
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Health care | 59 (14.9) | |
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General/other | 51 (12.9) | |
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Female | 100 (61) | |
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Male | 45 (27.4) | |
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Other | 16 (9.8) | |
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Personal account | 142 (86.6) | |
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HIV/AIDS work | 49 (29.9) | |
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Professional account | 41 (25) | |
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Lesbian, gay, bisexual, transgender, and queer or questioning | 38 (23.2) | |
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White | 63 (38.4) | |
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Person of color | 61 (37.1) | |
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Other/undetermined | 22 (13.4) | |
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Black | 10 (6.1) | |
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256 (64.6) | ||
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Washington, DC (eg, PrEP4Her campaign) | 44 (17.2) | |
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New York | 29 (11.3) | |
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Chicago | 25 (9.8) | |
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United States in general (eg, Centers for Disease Control and Prevention or National Institutes of Health) | 16 (6.3) | |
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San Francisco | 11 (4.3) | |
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United Kingdom | 88 (22.2) | ||
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Other | 34 (8.6) | ||
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None provided/undeterminable | 18 (4.5) |
Of the 820 tweets that contained website links, most were for informational websites (496/820, 60.5%;
Link characteristics and contents. A total of 820 of the 1256 (65.3%) relevant tweets contained links. Additional characteristics are presented for linked informational websites.
Category/characteristics | Values, n (%) | ||||
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Informational website | 496 (60.5) | |||
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Tweets from another user (shared—not retweets) | 140 (17.1) | |||
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News article | 96 (11.7) | |||
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Research article | 68 (8.3) | |||
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Broken link | 69 (8.4) | |||
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Instagram/Facebook post | 42 (5.1) | |||
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Benefits of PrEPa | 75 (26.7) | ||
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Cues to action | 43 (15.3) | ||
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Self-efficacy/empowerment | 35 (12.5) | ||
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Risk of HIV/AIDS (ie, susceptibility, severity) | 31 (11) | ||
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Sharing information/resources | 94 (33.5) | ||
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Promoting PrEP use and access | 85 (30.2) | ||
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Describing personal narrative/experience | 47 (16.7) | ||
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Raising awareness of PrEP | 28 (10) | ||
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Soliciting audience engagement | 24 (8.5) | ||
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Women (cisgender) | 82 (29.2) | ||
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Other | 37 (13.2) | ||
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People of color | 35 (12.5) | ||
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Heterosexual couples | 35 (12.5) | ||
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Serodiscordant couples | 31 (11) | ||
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Pregnant women | 26 (9.3) | ||
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Transgender women | 21 (7.5) | ||
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Health professionals | 17 (6) |
aPrEP: pre-exposure prophylaxis.
Factor analysis items and factor loadings. All factors retained had eigenvalues (λ) greater than or equal to 1.0. All items retained had factor loadings greater than or equal to 0.25.
Items | Component factor loadings | ||||||
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1 | 2 | 3 | ||||
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Informational website | 0.53 | —a | — | |||
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Benefits | 0.53 | — | — | |||
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Self-efficacy | 0.41 | — | — | |||
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Cues to action | 0.32 | — | — | |||
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Promoting PrEPc use and access | 0.49 | — | — | |||
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Sharing information/resources | 0.62 | — | — | |||
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Women (cisgender) | 0.40 | — | — | |||
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People of color | 0.35 | — | — | |||
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Black people | 0.36 | — | — | |||
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Heterosexual couples | — | 0.38 | — | |||
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Lesbian, gay, bisexual, transgender, queer | — | 0.31 | — | |||
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Serodiscordant couples | — | 0.33 | — | |||
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Transgender women | — | 0.29 | — | |||
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None/undetermined | — | — | 0.45 | |||
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Risk of HIV/AIDS | — | — | 0.25 |
aNot applicable.
bHBM: Health Belief Model.
cPrEP: pre-exposure prophylaxis.
This study describes tweets about HIV PrEP directed at trans- and cisgender women in a global sample over a nearly 10-year period. We found that this sample of tweets was posted by a relatively small group of users (mostly organizations) and significantly decreased after 2018. Most tweets specifically targeted people of color, including imagery and links to informational websites. Less than half of tweets contained any HBM concepts, and only a few contained cues to action. Lastly, while our sample included only tweets relevant to women, we found that the tweets directed to LGBTQ audiences received the highest levels of audience engagement.
Our finding that few tweets contained theoretical constructs is consistent with evidence that theory remains underused in social marketing campaigns [
The extensive use of tweets using inclusive imagery targeted at women of color is an appropriate approach for more effective engagement. In addition to inclusive imagery, our factor analysis indicated that more than a third of tweets were intended to share information and promote PrEP to people of color. Use of inclusive imagery is a guiding principle of health communication, because representation affects how people construct identity and develop normative behaviors [
We found that a relatively small sample of Twitter users, mostly organizations, generated content over a decade-long period. This is consistent with findings that health organizations tend to follow each other in relatively small networks on social media and tend to circulate the same information to the same followers [
Audience engagement with tweets that were directed to LGBTQ individuals highlights both the disparity in access to PrEP for women and an opportunity for improvement. In the community of men who have sex with men (MSM), PrEP use has proliferated since its approval in 2012. In that time, HIV PrEP among MSM has been significantly destigmatized, with PrEP use among the MSM community being considered a social norm. For example, in one study of a group of MSM, participants described the gay community coalescing around the use of PrEP as individuals taking responsibility to protect themselves and others against HIV [
The drop in the number of tweets about PrEP directed at women since 2018 is a concerning trend. PrEP received national attention in the United States with the release of new Centers for Disease Control and Prevention guidelines for high-risk individuals in 2014, which were subsequently updated in 2017. Guidelines were not updated again until 2021 with recommendations for greater inclusivity in offering PrEP. In the United Kingdom, PrEP received major publicity when it was announced in 2016 that PrEP would be made freely available to those at risk for HIV. However, attention for PrEP in the media declined after 2017, as is reflected in the patterns seen from the tweets in this sample. Moreover, the COVID-19 pandemic was a distraction from persistently high rates of HIV infection, which stayed constant throughout the pandemic, especially among young women [
Several limitations should be considered in the interpretation of these results. Our sample was gathered based on Twitter hashtags, and it is possible that some hashtags related to women and PrEP were missed. However, as new hashtags were identified, they were added to the sample. In addition, our sample was limited to the Twitter platform, but there are several other social media platforms that include content about women and PrEP (eg, Instagram and YouTube). Our analyses of geographic location were limited to the information in user profiles, which may lack accuracy. Our analysis is also limited to the coders’ perceptions of user and audience race, gender identity, and sexual orientation. While we could have used a computer algorithm for coding, we chose to use traditional manual qualitative data analysis methods to allow for interpretation of nuances and the coding of multimedia sources. Lastly, the scope of our analysis was limited to digital information from the internet, and it lacks other information, such as information shared as part of community outreach and events. Nonetheless, we collected a large, comprehensive, international sample of tweets over many years.
This study of tweets about HIV PrEP directed at women on Twitter identified a relatively limited and declining body of content. Many tweets used positive and appropriate imagery inclusive of people of color. These findings point to several areas for improvement for future Twitter campaigns directed at women about PrEP.
User codebook.
application programing interface
Health Belief Model
lesbian, gay, bisexual, transgender, queer
men who have sex with men
pre-exposure prophylaxis
The data sets generated during and/or analyzed during the current study are available from the corresponding author upon request.
SK contributed to conceptualization, supervision, resources, methodology, software, validation, formal analysis, data curation, original draft preparation, manuscript review, and editing. AA contributed to software, validation, formal analysis, data curation, manuscript review, and editing. SM contributed to software, validation, formal analysis, data curation, manuscript review, and editing. AB contributed to software, validation, and formal analysis. SS contributed to conceptualization, manuscript review, and editing. PC contributed to conceptualization, manuscript review, and editing. MK contributed to methodology, software, validation, formal analysis, data curation, original draft preparation, manuscript review, and editing.
None declared.