“If I’m at home,I do it at home”: Qualitative study on HIV self-testing among transgender women in Argentina

Abstract

Background

Evidence among key populations supports acceptability of HIV self-testing (HIVST) due to its privacy and convenience. However, insufficient research has been done among transgender women (TGW), especially in Latin America. Consequently, the aim of this study was to explore the acceptability, perceptions and recommendations for HIVST implementation among TGW in Buenos Aires.

Methods

A focus group was conducted in July 2019. Particpants were invited to touch and learn about a displayed HIVST kit. The following main topics were explored: acceptability, reasons for seeking self-testing, preferences for training, distribution, periodicity and recommendations for HIVST implementation.

Results

The sample consisted of 12 TGWs; mean age of 26 years (IQR = 22–28); 66% had history of sex-work. The main motivations for seeking HIVST were convenience, privacy, and usage to reduce stigma and discrimination by health-care providers. Recommendations for HIVST were: distribution from primary health centers and trans-sensitive centers; affordable price; assistance by peer health promoters; and the provision of clear written and video instructions.

Conclusions

Tailored implementation of HIVST can increase HIV testing rates, early detection, and linkage to HIV-care in this high-prevalence group. This study provided community-driven suggestions to inform and adapt an HIVST feasibility pilot study and future implementation in Argentina.

Keywords

Diagnosis Screening HIV South America

Background

According to UNAIDS estimates, 37.7 million people were living with HIV worldwide in 2020.¹ Key populations accounted for 65% of new HIV infections. In particular, the HIV worldwide risk in transgender women (TGW) is 34 times higher than in the general population.¹ Social, academic, and occupational exclusion leads TGW to engage in multiple drug use, risky sexual behaviors, and sex work, which largely explains why TGW are so susceptible to HIV and other sexually transmitted infections (STIs).² Barriers to HIV testing among TGW include stigma and discrimination by healthcare providers, leading the access to healthcare only for truly serious health conditions.^2,3

HIV self-testing (HIVST) has emerged as a promising strategy to reduce the gap between HIV acquisition and diagnosis, particularly in vulnerable and hard-to-reach populations, by overcoming structural and individual barriers such as stigma and discrimination.^4–7 Between 2015 and 2021, a study in Yangon among TGW and men who have sex with men (MSM)⁸ found that HIVST was highly acceptable due to its practicality, privacy and convenience, while similar findings were found among the same populations in the United States, Puerto Rico,⁹ and Cambodia.¹⁰ According to a recent meta-analysis, HIVST increased the mean number of HIV tests by 2.56 over follow-up among female sex workers, MSM and a small number of TGW. It has also been shown that HIVST does not lead to negative consequences such as decreased condom use, which is a common fear.⁴ In contrast, the main concerns expressed were the lack of counseling and psychosocial support, the reliability of the tests, and the risk of user error during administration.^5,10–14 The cost of purchasing self-test kits^7,10,15 and usability as a significant component of accessibility were also seen as barriers.¹⁶

Despite TGW’s specific barriers to caring and distinct contextual vulnerabilities, they have often been merged into MSM-tailored efforts that may not be culturally appropriate. As a result, insufficient research has been done to support alternative testing procedures for TGW, which are desperately needed, particularly in Latin America.¹⁷ TGW’s attitudes and concerns regarding HIVST were investigated in Peru in 2017, and revealed a high willingness to use the HIVST, with the cost of purchase and unclear instructions being the primary barriers.¹⁷ In addition, an online survey among cisgender women and MSM was conducted in Argentina during the same year, revealing high acceptability, particularly for blood tests, with preference for picking up kits from pharmacies or community organizations, and the vast majority of participants willing to go back for results counseling.¹⁸

Although blood-based or oral-fluid HIVST is not currently available in Argentina, HIVST pilot implementation studies are being carried out to identify the difficulties faced by users, health professionals, other stakeholders (such as professional associations), and decision makers. It is important to evaluate its acceptability, practicality, and reliability in the local context to implement it in key populations, like TGW. As a result, the purpose of this study was to explore the acceptability, perceptions, and recommendations for blood-based HIVST implementation among TGW in the Buenos Aires Metropolitan Area.

Methods

This qualitative, cross-sectional study was part of a larger project that aimed to gather information from the community about blood-based HIVST to inform the TRuST (TRansgender Self-Test) implementation study in Argentina. The aim of TRuST was to evaluate the implementation of HIV testing among TGW and MSM. It consists of three stages: first an exploratory phase to understand users' experience (this study), second the evaluation of feasibility and acceptability among MSM and TGW, and third a focus group of those who had taken part in the second stage.

Data for the study were collected by focus group technique. During the group session, researchers displayed an HIVST model and its written instructions and allowed participants to touch and learn about it. Information related to participants' perceptions was collected on the following main topics: acceptability, reasons for seeking self-testing, preferences for training, distribution, periodicity, reporting of results, counseling, other perceptions, and recommendations for HIVST implementation.

Participants

Study eligibility included¹: being 14 years of age or older²; self-identifying as a transgender woman³; have had a rapid HIV and/or HIV/syphilis test at some point in their life⁴; having provided informed consent.

Data collection

This study was approved by the ethics committee of the institution, a non-profit organization based in Buenos Aires, Argentina, that conducts clinical and social research with focus on HIV/STI and provides health and education services to those who are at risk of or have been diagnosed with transmissible diseases.

Participants were contacted in a variety of venues, including through outreach activities to places where key community members gather by peer health promoters. During recruitment, detailed information regarding study purpose and methods were provided, both verbally and written. Participants did not get any financial incentives for their participation.

A single focus group was conducted in Spanish, in July 2019. The 90 min session was led by two researchers. Demographic information was requested prior to the session, no information about participant’s HIV serostatus was gathered. Participants were informed of the purpose of the study and confidentiality information was provided. Signed informed consent was obtained prior to participation and to allow the session to be recorded to capture the speech and actual words and expressions of the individuals.

Data analysis

To maintain anonymity and confidentiality, all identifying information was deleted from the interviews. An inductive thematic content analysis approach was used to analyze the focus group transcript. Researchers created a coding manual and categorized common responses. Illustrative quotes were identified for themes and sub-themes. The findings were translated into English by one of the team members, and two bilingual researchers involved in the study double-checked the translation.

Results

The sample consisted of 12 TGW. All participants were at least 18 years old, with a mean age of 26 years (IQR=22–28 years), with most participants indicating a history of sex work (n = 8). Four participants had incomplete secondary school or lower level of education, six had completed secondary school and only two participants had achieved some university education. Only one participant was a foreigner (Peru), while the others were from Argentina. None of the participants had used HIVST before.

The results are presented by describing the findings and using the verbatims as a support for exemplification. The results were organized in the following sections: reasons for seeking HIVST and needs and recommendations for HIVST implementation.

Reasons for seeking HIVST among TGW

Throughout this theme, participants highlighted benefits with HIVST usability, including convenience, privacy, and frequency of testing, as well as the possibility to test outside of healthcare settings to avoid potential discrimination situations and increase uptake among individuals who cannot reach these settings.

Convenience

Half of participants expressed interest in using HIVST in the future. Five participants found it convenient to do an HIV test by themselves when they have doubts about their HIV status without the need to attend a healthcare center. “I think those who are facing possible infections or risks should try it.”

Moreover, many TGW in Argentina are internal migrants, mostly relocated from the northwest region of the country to Buenos Aires City. They usually travel back to their home-towns where they stay for months. Two participants agreed that HIVST seems a practical method of testing frequent travelers or people with unstable housing. One participant stated, “Besides from doing it ourselves, it would be very useful because sometimes we go back to our house and in the north, it is not so common to see something like this…”.

Privacy

Four participants confirmed the importance of being able to perform HIVST without the judgmental gaze of another person. One participant remarked, “If I’m at home, I do it at home, I’m not with people I know, then only me and no one else will know if it’s positive or negative… It would be great”. Additionally, another person expressed that it will give her more autonomy and freedom to choose if she wants to share the result with someone or ask for help: “(…)it will be more private, more intimate and more self-care. Then you would go alone or accompanied [to the health facility] (…) I (will) feel more comfortable and less discriminated against.”

Allows frequent testing

Another participant added “I would take one every month. That is, for example, if I see that I get a positive one, yes, I would go to have them do it, take my blood and do everything again. But if not, no. In other words, if I’m negative, I’d do it every month for a check-up”. Neither support nor disapproval of this notion was voiced.

Avoid stigma and discrimination by healthcare providers

Four participants considered HIVST as a tool for reducing social discrimination, as well as insensitive comments from healthcare providers and unpleasant waiting room conditions. “No one supports you; you know? And to do it among us [TGW] or do it by myself, buy it or have it myself and do it; I would feel safer because if I go to some place [health facility] you can be treated badly or they make you wait for hours and hours, or they don’t give you an appointment.”

Sexual Partner testing

Half of participants expressed an interest in sexual partner testing, agreeing that it would be appropriate for stable couples but not for sexual clients. “Not for clients. …but let’s be honest, girls, those who had a boyfriend, a girlfriend… maybe you trust that person and maybe you don’t want to use a condom with that person… but this [HIVST] would help you a lot to remove all doubt.”

Needs and recommendations for HIVST implementation

This theme centers around one of the objectives of the study, gathering practical community-driven suggestions on accessibility (e.g. distribution and price) and adaptation to the community needs (e.g. peer navigators, adapted test instructions).

Distribution from primary health centers (PHC) and trans-sensitive centers

Four TGW proposed that collecting the kits from primary health centers (PHC) and trans-sensitive centers would be an appropriate distribution method. “(…) within the PHC because in the majority they work kindly with the neighborhood, and with the neighbors. Not only with us, but with trans people. Because we are also with hetero or bisexual people and they are with us.”

Affordable price

In terms of pricing, three participants agreed that both options should be available, to buy or to pick it up for free at hospitals or PHC. “It is like condoms; you have a condom for free or you can buy it (…) if someone does not want to go to a health center and the pharmacy is closer…”. Participants did not specify a price.

Role of peer health promoters

Five TGW also remarked that it would be preferable if the test could be assisted by peer health promoters, underlining that they are trained and respect confidentiality. “More intimate and you can do everything with the girls (peer health promoters)…” Other participants agreed that peer health promoters are key to access information and HIV care “I didn’t know about these things [HIV prevention and testing] … The one who tells me about these things is S. (peer health promoters), she is the one who many times referred me everywhere [ I need]). The truth is that I didn’t see diseases, I never thought about that. And well, I came here, and I learned. And I said, well, now I have to take care of myself, and I came here and well, everything went negative, thank God… and the one who helped me with all this was S.”

Linkage to trans-sensitive centers

Four participants stated that if they tested positive, they would approach trans-sensitive health centers or hospitals. “I believe that if my self-test is positive, then I would go to the nearest health center or hospital. Or to a “friendly” hospital.”

Adapt the instructions to the target population

When provided with an instruction sheet for the HIVST kit, half of participants thought it was unclear, difficult, and lengthy. One even stated, “Half of the exams will be left undone… or done incorrectly…". Additionally, five participants mentioned that using these instructions would result in the need of training or coaching with skilled health staff. “It makes you very confused (…) It would be good if a professional came and we sat here and each of us had a kit and she explained it to us and well, we would see how she does it and then… all done”.

Five participants proposed the HIVST package to contain a link to an instructional video. “That the [explanatory] video should be on some page and enter somewhere… or also another explanatory brochure, where you can find it summarized and more… with fewer complicated words…” Three also proposed that the kit contain instructions on what to do next, as well as a free and private phone number, available 24 h a day, to advise on what to do if the test results were positive.

Discussion

This focus group explored key dimensions about HIVST and revealed a positive attitude toward this strategy, addressing the reasons for seeking HIVST and presenting community-driven suggestions for HIVST clinical studies and implementation.

Convenience has been highlighted as one of the benefits of HIVST in several studies. Recent qualitative data have shown that HIVST can increase the availability and coverage of testing .⁸ It would also overcome barriers related to inconvenient clinic hours, poor service quality, and distance to services .⁴ In line with research findings, participants in our study reported that HIVST would be convenient, especially when traveling within the country. These findings underline the importance of having the ability to access an HIVST, particularly in low/middle income countries where resource distribution is unequal, since it can benefit internal migrants among key populations to reach an early diagnosis and treatment. Furthermore, it can be a tool to improve coverage to remote areas due to its practicality and the low personnel demand required for it.

Another benefit reported in the literature was the privacy HIVST provides, as a mean of overcoming barriers like stigma and discrimination that TGW frequently face within the health system.⁷ Furthermore, HIVST gives people control over disclosure of their HIV status.¹¹ Participants in our study indicated that HIVST provided more privacy and reduced their exposure to potentially uncomfortable situations.

HIVST can also be employed to aid with sexual risk-taking and decision-making. HIVST could be a helpful and safe technique for serosorting and HIV prevention among key populations with low rates of violence.⁹ Participants in our study expressed willingness to take the test with their stable relationships in order to reduce condom use. However, they would not use it with sexual clients, probably to avoid violent situations. Further implementation studies should address HIVST use with different sexual partners and its possible consequences.

On the other hand, the lack of psychosocial support is one of the barriers mentioned in the literature.^{5,11,13,15,16} Aside from the privacy that HIVST provides, it is also solitary, which can generate anxiety and fear of a positive result.^4,7,11,13,16 Participants in our study stated that they prefer to take the test with the presence of trained peer health promoters in a confidential setting rather than alone. They also suggested having emotional support and guidance throughout a free phone line.¹⁹

Moreover, problems with linkage to care after self-testing are also seen as a barrier. Although HIVST would increase testing uptake, implementation should be approached with caution and promotion of linkage are critical for optimizing HIVST interventions and preventing individuals from falling through the cracks of the health system.⁴ According to a previous survey conducted in Argentina,¹⁸ most individuals polled would go straight to a health center and 70% would submit their results online to be contacted. These results highlight the need to facilitate HIVST linkage through different means, in concordance with other studies that suggest in-person as well as hotline phone calls.¹⁰ Some of the participants in our focus group said that if they tested positive, they would go to a nearby health facility or hospital, but they suggest that instructions on what to do with positive findings should be included in the HIVST kit.

As in general population,^7,13,16 another major challenge for TGW is the lack of clear instructions for taking the test that could increase rates of user errors.^5,7 TGW should be trained at trans-sensitive centers or through peer health promoters, according to the participants in our focus group. This suggestion is in line with other study that conclude that peer-led pretest training could be an acceptable and feasible strategy for sex workers and could minimize user errors.²⁰ For those who do not have time to visit a center, the concept of having informative videos was also preferable. This emphasizes once more the critical importance of peers and leaders within the transgender community through the HIV cascade of care.^19,21

Additionally, particularly in middle- and low-income countries, the cost of purchasing HIVST was seen as a barrier.^5,10,13,17 Both free and paid options should be provided, according to the participants. Finally, distribution methods were explored in this research, with participants preferring to have the kits provided by PHC or trans-sensitive facilities. This matches with a poll conducted in Argentina,¹⁸ where the majority of MSM respondents preferred to withdraw kits from pharmacies or health clinics. Other studies¹³ also reported on a peer-to-peer method, which could improve HIV testing access by overcoming stigma and discrimination by health institutions.

Limitations

The study has several limitations. First, the results may not be extrapolated to TGW outside of the study. As the participants stated, they could not imagine this strategy to be implemented outside the Buenos Aires metropolitan area or other big cities. Future studies should collect information about the acceptability, perceptions, and specific barriers for HIVST implementation in key populations and decision-makers in other geographic areas.

Second, since participants were recruited through peer health promoters contacts, this may have resulted in selection bias. Given that the studies' peer health promoters had close relationships with a variety of TGW’s groups and nongovernmental organizations throughout the Buenos Aires metropolitan area, we believe this bias is minimal. Third, due to the involvement of our peer research staff in HIV prevention efforts in Buenos Aires, social desirability bias may have been a factor leading some participants to overstate HIVST acceptability or be more positive about it or the role of peer health promoters.

Additionally, one of our limitations was that we were unable to match the verbatiums used with the demographic information provided by the participants.

Finally, as participants responded to subjective appraisals and personal beliefs, rather than actual experience of HIVST, it is possible their perceptions will change during the pilot studies and implementation phase of HIVST among TGW populations. Future implementation studies would shed light on these aspects.

Conclusion

HIVST is a potential technique that could allow decentralized testing, protect privacy, and make HIV service delivery systems more responsive to the needs of key populations, as TWG. This study provided community-driven suggestions to inform and adapt an HIVST feasibility pilot study as well as a later implementation stage and is the first study of this kind in Argentina.

Given the reported concerns, participants’ education, and peer health promoters will be critical to link HIV self-testing positive cases to trans-sensitive HIV healthcare. Tailored implementation of HIVST may increase HIV testing rates, early diagnosis, and linkage to HIV care in this high-prevalence group.

Footnotes

Acknowledgements

We would like to thank all the participants, and the research team involved in this study.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Amalia De Luca

Virginia Zalazar

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