Preferences for an HIV Self-Testing Program Among Women who Engage in sex Work and use Drugs in Kazakhstan, Central Asia

Abstract

Purpose:

Women engaged in sex work (WESW) who use drugs face barriers to HIV testing. HIV self-testing (HST) may empower sex workers to learn their HIV status; however, it is not scaled up among WESW in Kazakhstan. This study aimed to explore barriers and facilitators to traditional HIV testing and HST among this population.

Method:

We conducted 30 in-depth interviews (IDIs) and four focus groups (FGs) with Kazakhstani WESW who use drugs. Pragmatic analysis was used to explore key themes from qualitative data.

Results:

Participants welcomed HST due to its potential to overcome logistical challenges by accessing HIV testing, as well as the stigma that WESW faces in traditional HIV testing. Participants desired emotional and social support for HST, and for linkage to HIV care and other services.

Discussion:

HST among women who exchange sex and use drugs can be successfully implemented to mitigate stigma and barriers to HIV testing.

HIV self-testing (HST) is a potentially powerful tool to increase HIV testing and linkage to care in sex worker communities but has yet to be scaled up with women who exchange sex and use drugs or with women in Central Asia, a region where HIV infections continue to grow. Eight percent of all new HIV infections are among women engaged in sex work (WESW), with another 19% of infections among clients and partners of sex workers in Central Asia. (UNAIDS, 2017; UNAIDS, 2021; World Health Organization. Regional Office for Europe, 2021); however, rates among WESW who use drugs are higher. Prevalence of HIV among sex workers in Kazakhstan is 1.3% in 2021 (Kazakh Scientific Center of Dermatology and Infectious Disease (KSCDID), 2021b). HIV testing is the point of entry into HIV care and is thus critical for global prevention efforts. Increasing engagement in all stages of the HIV prevention and care continuum, especially for key populations vulnerable to HIV, like WESW, is essential to ending the global HIV epidemic. Although HIV testing rates among WESW tend to be higher than the general population in Kazakhstan—official data suggests that the majority of people who self-identified as sex workers (87%) were tested for HIV in 2021 (KSCDID, 2021a)—barriers remain and must be addressed to increase consistent HIV testing for WESW, including those who use drugs. HST is a promising tool for achieving these goals.

Studies conducted in other contexts have identified key barriers to HST that may be important to the development of programs for WESW in Kazakhstan. Common barriers in accessing and using HST among WESW include perceived accuracy of self-tests, anxiety about receiving results alone, lack of knowledge of HST, stigma of HIV and fear of HIV-positive results, scheduling, and concern about missing linkage to care. (Beckham et al., 2021; Chanda et al., 2017; Khajehkazemi et al., 2021; McCrimmon et al., 2018; Nnko et al., 2020; Shava et al., 2020). Stigma is a primary barrier to an HST: WESW reported fear of being seen with a self-test kit or at a site associated with HIV and the potential for violence from the community, clients, and police as a result. Anxiety or fear around receiving a positive test result alone or outside of a health care setting is also a concern, as was the need for follow-up with a confirmatory test at a clinic. It is also important to note the potential for intimate partner violence (IPV) resulting from HST at home, which occurred among a few participants in an HST program in Zambia (Chanda et al., 2017). Research on IPV and HST is sparse, including how it interacts with HST and sexual health care for WESW.

Existing research has also highlighted facilitators of HST among WESW, including feelings of autonomy, awareness of one’s HIV status, the ability to bypass health care providers, oral specimen collection (due to fear of needles), cost, and convenience. For instance, WESW in other contexts note that receiving the self-test kits from peers and peer educators as opposed to HIV clinics would be a major facilitator of HST for them and their peers. (Obiezu-Umeh et al., 2021; Ortblad et al., 2017; Ortblad et al., 2018; Shava et al., 2020). Women also noted that conducting the test themselves, without the presence of a clinician, was a benefit.

Given vulnerabilities among WESW who also use or inject drugs, special considerations may be needed when developing HST programs for this population. Data on self-testing among WESW who use drugs are limited; in a recent literature review on distribution strategies for HST, out of 33 studies, only 1 included people who inject drugs (PWID) (Eshun-Wilson et al., 2021). Among PWID in Vietnam who self-tested positive for HIV (51 out of 1,551 participants), 100% followed up with a confirmatory HIV test, and 92% started antiretroviral therapy during the study (Nguyen et al., 2019). However, a recent study of hepatitis C self-testing among PWID in Kazakhstan found that the delivery of self-tests facilitated testing (Martínez-Pérez et al., 2021). Collectively, these studies suggest that HST with people who use or inject drugs may be a useful tool for increasing testing and care engagement, though more research is needed that examines barriers and facilitators to HST for WESW who also use drugs.

To better understand the unique HIV testing experiences and needs of WESW who use drugs in Kazakhstan, and their perspectives on HST, we conducted in-depth interviews (IDIs), focus groups (FGs), and a brief survey with WESW in two cities. Findings from this study provide critical information for scaling up and expanding HST programs for WESW in contexts with high rates of HIV and with women who use drugs.

Method

Data collection included both IDIs and FGs, both conducted by trained facilitators. Interviews with 30 participants were conducted between March and April 2021. Four FGs with a total of 18 women were conducted after IDIs between May and July 2021. Participants were recruited through outreach workers at two NGOs in Kazakhstan: Amelia (located in the city of Taldykorgan) and Saubolashak (located in Almaty). These NGOs focus on HIV prevention and harm reduction program implementation for vulnerable populations including sex workers. Women were eligible if (1) they report vaginal or anal intercourse in the past year in exchange for money, alcohol, drugs, or other goods/resources; (2) injected/used drugs in the past year; (3) reported at least one episode of condomless sexual intercourse in the past 90 days with a paying, casual, or regular (intimate) sexual partner; and (4) report HIV-negative or unknown status. All participants provided written informed consent prior to participation. The study was reviewed and approved by the Institutional Review Board of the City University of New York and Columbia University, Local Ethics Committee of the Al-Farabi Kazakh National University.

The IDIs and FGs were facilitated by research assistants in Kazakhstan. Facilitators received training from the whole study team to conduct thorough data collection using these methods. The IDIs covered (a) experiences with and perspectives on HIV testing; (b) HST impressions (e.g., convenience and safety), beliefs (e.g., accuracy, privacy, potential for social harm, etc.); (c) preferences for (e.g., specimen type, test operator is test user, etc.); and (d) potential barriers to/facilitators of HST. We also focused on the role of stigma as a facilitator of and barrier to testing and linkage to HIV care. FGs focused on potential HST support program design features, including peer-based, advocacy coalition, and collective action intervention approaches, as identified through the IDIs.

We screened a total of 71 potential participants, 50 (70%) of whom were eligible for participation. Of this number, all consented to participate; 30 completed the IDI, and 18 attended one of four FGs. Of the 71 who screened for participation, 2 women were excluded because they did not speak Russian, 9 because they did not report qualifying drug use, 4 because they were living with HIV, 4 because they reported consistent condom use with partners, and 2 because they had not exchanged sex for money, drugs or other needed resources within the eligibility time frame.

We collected sociodemographic information from participants through a brief survey prior to participation. IDIs and FGs were conducted online using secure web-based video conferencing software (Zoom/Jitsi). IDIs and FGs were conducted in Russian. They lasted from 45 to 70 min and were digitally audiotaped, professionally transcribed in Russian, and translated into English. Participants were compensated with 1,000 Tenge ($3 USD) if they completed the screener and with 6,000 Tenge ($15 USD) if they completed the brief survey and the IDIs or FG. Both interviews and FGs were recorded, then transcribed and translated into English.

As the purpose of the interviews and groups were to provide information and perspectives on practical and other aspects of an HST program design, we first analyzed our data using a modified version of the “framework method,” which emphasizes both deductive and inductive approaches. Transcripts were independently read by all members of the analysis team to collect first impressions, identify emergent themes, and develop a pragmatic analytic strategy. Thus, we organized responses to each area of the interview guide, using summative statements as well as verbatim quotes in response to key questions in the interview guide. These were then organized into areas, as well as a working matrix that reflected the major interview domains as well as theoretical drivers of behavior change.

Results

In the overall sample, 24 participants were recruited from the Almaty site and 24 from Taldykorgan. The mean age across the sample was 31.5 years (SD = 6.8, range: 21–49 years) (Table 1). We did not note any age-related trends. The study population was 52.1% ethnically Kazakh and 68.8% did not have a main partner. Of the total participants, 60.4% had completed vocational or higher education and 39.6% of respondents had attended only primary, secondary, or high school. At the time of the survey, 87.5% of participants stated that sex work was their main source of income, 10.4% stated sex work was an additional source of income, and 2.1% stated they exchanged sex work for goods (food, housing, drugs, or alcohol). Sociodemographic characteristics of participants are presented in Table 1. We present our findings around the key themes of knowledge of and need for HST, HST program preferences, and support for HST training. Specifically, we describe findings related to experiences with traditional HIV testing; HST access points for test kits, operational and social supports, and confirmatory testing; and HST training needs related to location and modality, group dynamics, and other barriers and facilitators to participation. Participant names have been changed to protect their anonymity.

Table 1.

Sociodemographic and Other Characteristics of the Study Population (N = 48).

	Total Sample		Participants who Attended IDIs		Participants who Attended FGs
	(N = 48)		(N = 30)		(N = 18)
Characteristic	n	%	n	%	%	%
Gender identity
Female	48	100	30	100	18	100
Other	0	0	0	0	0	0
Age, in years (Mean [SD])	31.5 [6.8]		32.5 [7.4]		29.8 [5.3]
Ethnicity
Kazakh	25	52.1	11	36.7	14	78.8
Russian	14	29.2	12	40.0	2	11.1
Others	9	18.7	7	23.3	2	10.1
Birth Country
Kazakhstan	43	89.6	27	90.0	16	88.9
Other	5	10.4	3	10.0	2	11.1
Marital status
Married	1	2.1	1	3.3	0	0
Civil marriage	4	8.3	3	10.0	1	5.6
In a long-term relationship	10	20.8	7	23.3	3	16.7
No partner	33	68.8	19	63.4	14	77.7
Have biological, adopted, or foster child
No	31	64.6	19	63.3	12	66.7
Yes	17	35.4	11	36.7	6	33.3
Level of education
Primary and secondary school	11	22.9	7	23.3	4	22.2
High school	8	16.7	6	20.0	2	11.1
Vocational education	23	47.9	13	43.3	10	55.6
Higher education	6	12.5	4	13.3	2	11.1
What is sex work for you in terms of income?
Main source of income	42	87.5	25	83.0	17	94.4
Additional source of income	5	10.4	4	14.0	1	5.6
Exchange for goods (food, housing, drugs, or alcohol)	1	2.1	1	3.0	0	0
Current living situation
In my home or apartment that I own	4	8.3	1	3.3	3	16.7
In my home or apartment that I rent	36	75.0	22	73.3	14	77.7
In my parents’ or other family’s home or apartment	3	6.3	2	6.7	1	5.6
In someone else’s home or apartment (not family)	3	6.3	3	10.0	0	0
Other	2	4.1	2	6.7	0	0
Have not had enough money to buy food or pay rent in the past 90 days
No	14	29.2	10	33.3	4	22.2
Yes	34	70.8	20	66.7	14	77.8
Were homeless or had not stable housing in the past 90 days
No	33	68.8	19	63.3	14	77.8
Yes	15	31.2	11	36.7	4	22.2
Have you ever been arrested or incarcerated
No	27	56.2	15	50.0	12	66.7
Yes	21	43.8	15	50.0	6	33.3
Have you been arrested in the past 90 days
Yes, I have been arrested in the past 3 months	3	14.3	3	20.0	0	0
Yes, I have been incarcerated in the past 3 months	1	4.8	0	0	1	16.7
No, I have not been arrested or incarcerated in the past 3 months	17	80.9	12	80.0	5	83.3

Note: IDIs=in-depth interviews; FGs=focus groups.

Barriers to Traditional HIV Testing

Through discussions of participant attitudes and experiences with traditional (professionally administered) HIV testing, we highlight barriers to testing as a way to inform the development of HST programs for women who use drugs and trade sex. Of note, we discuss logistical barriers to testing that may be alleviated by HST and the importance of stigma.

Logistical Barriers.

Participants noted that time, location, and travel are common barriers to testing frequently. Many participants state the time commitment of HIV testing as a barrier to testing consistently (e.g., not enough time, long queues). Participants acknowledge that staying home to test may facilitate more frequent testing: “It is convenient not to go anywhere. Who has time, as they say, twenty-four hours a day, if she is busy twenty hours, of course this rapid testing is convenient for her” (Gulnara, 48). A quick result was also very important to participants, “It seems to be fast, I guess. You don’t have to go somewhere and interact with other people. You can do it at home in any conditions at any time and be sure that everything is clean” (Alina, 29). As these quotes suggest, being able to choose a time and location that is most convenient for the individual is a potential strength of HST that may increase not only testing, but consistent testing.

Fear and Stigma.

Participants expressed a number of fears, like testing positive for HIV, and in turn getting sick and/or infecting others, which was also interconnected with both the anticipation and experience of stigma. Concerns related to stigma had to do with stigma as a deterrent to testing and engagement in care, including fears of stigma from family/community, work-related concerns, and stigma related to drug use, as well as stigma within health settings that can prevent linkage to care.

Given high levels of stigma against people with HIV, sex workers and people who use drugs, HIV testing was associated with fear of reactions from others, which acted as a deterrent to testing. For instance, participants share that community members assume that people who get tested frequently for HIV are already sick with HIV. One participant stated: “They probably think that we are all sick if we are checked. Bad thoughts come immediately” (Sofia, 40). Another expressed how community members assume those who get tested are HIV positive, “Most likely they think that they are sick, and therefore pass the tests” (Gulnara, 48). The concern that others would think you have HIV stemmed from fear of being ostracized, as illustrated in the following quote: “People are subconsciously afraid to get tested at all. They are afraid of some kind of condemnation from other people” (Ana, 22). Another participant also talked about how HIV stigma would lead to loss of support in the event of an HIV-positive test: “In Kazakhstan, if you get sick, there is still not enough support…the state will still keep us separate, and look with disgust, […] Yes, they are afraid that they will be separated” (Maria, 33).

Participants also expressed concerns that frequent HIV testing would lead others to believe they were involved in sex work, which can have very real consequences for women and their families. For instance, one participant said: “Well, of course they think that it means she has a lot of partners, she is a whore, a prostitute, or maybe a drug addict who sleeps with someone for a dose (Ana, 22). “They think they are girls of the street” (Mila, 30). Another participant talked about fears related to losing work if positive or even if others think she may have HIV: “If clients even come to her, they are immediately told that she is sick” (Maria, 33).

Concerns around stigma from health care providers were also an important part of HIV testing considerations. For instance, participants indicated that they were concerned about their identity, or their test results being leaked by providers: “I don’t believe that doctors can hide it all and not tell anyone, it will pop up somewhere anyway, and someone will tell someone. Therefore, maybe people are afraid. We are afraid to go to such places in general, we do not go to hospitals” (Aigul, 37). This sentiment was echoed by another participant who spoke about trust and confidentiality: “How can I be sure that all is confidential there? They cannot be trusted” (Taldykorgan FG). These stigma-related fears around HIV testing were exacerbated by women’s status has people who use drugs as well as engage in sex work: “Well, of course, they just look at our arms. And all of them already feel disrespect to us… Well some yes, some no” (Dariga, 37).

These quotes highlight how intersectional stigma is a major factor in how sex workers who use drugs think about HIV testing. Fear of what testing, specifically frequent testing, might imply to other sex workers, to clients, and to the broader community played a role in HIV testing decision making. Such fears are not unfounded as evidence suggests that anticipated stigma is a major deterrent to HIV testing as well as engagement in needed HIV care. Importantly, experiencing stigma in health care settings from providers is also a major element of testing decision making. Expectations and experiences of poor treatment and limited confidentiality led to high levels of medical mistrust, which both prevented people from accessing testing, but also from linking to care if testing positive. Despite fears and challenges related to stigma, however, many participants recognized the importance of frequent testing and expressed motivation to care for their health.

Barriers Specific to HST

For this study, we also asked interview and FG participants about their interest in and concerns with HST. Participants shared their thoughts about the potential negative impacts of HST, confirmatory testing and linkage to care, and how structural barriers may impede these processes.

Access to Self-Test Kits.

Participants desired flexible and wide-spread access to self-test kits to address some of the logistical barriers to traditional HIV testing as described above. When asked how they would prefer to access self-testing kits, participants answered they would prefer to pick them up from the following places: AIDS center, private clinic, pharmacy, neutral non-health care-related space, and the Amelia NGO. Those who suggested a non-health care-related space, or “neutral territory” (Alina, 29) commented “not in the AIDS Center or in a friendly clinic, because there are a lot of people going there, maybe acquaintances who can see and recognize us” (Elena, 30). Most participants said that the pharmacy was the most convenient place to access kits due to the anonymity: “I do not know the pharmacist, she does not know me, I took it, bought it and went about my business further” (Tatyana, 25). Additionally, participants noted that pharmacies are easier to find and access than other organizations, “As we have pharmacies at every step” (Dariga, 37).

Negative Impacts of HST.

When asked about the potential health risks that may arise when self-testing for HIV outside of a health care facility, participants mentioned significant risks that need to be addressed in the rollout of HST for women who trade sex and use drugs. Specifically, women talked about the potential for violence or negative mental health outcomes in circumstances where they receive a positive test through HST.

Several women expressed concerns about the possibility of violence from intimate partners or clients if they tested at home and received a positive test. For instance, one participant said: “Of course my boyfriend would have beaten or hung me” (Almaty FG). Another participant said: “He told me - if, God forbid, you infect me, I will find you somewhere on the side of the road, slaughter you and throw you out. So, there were cases and, I tell you, more than once or twice” (Almaty FG, July 2). Although fears of violence after a positive result are a reality for traditional HIV testing too, testing at home using an HST kit may introduce new challenges. Threats to privacy when using HST outside of a clinic may have very real consequences making it important to plan for these possibilities when developing an HST training program. This may involve doing thorough assessments of violence exposure among women receiving HST kits and making plans for taking tests in private spaces and plans for dealing with positive tests.

Another potential with HST is the mental health implications of receiving a positive test in a context where immediate counseling is not available. One of the foundations of HIV testing is pre- and post-counseling, which has been instrumental in supporting individuals in the event of a positive test. When discussing HST with women in this study, a range of mental health concerns were raised from depression to potential suicidal ideation and attempts, and depression. Specifically, participants shared how they may react if they were to receive a positive test for HIV at home: “I’m even afraid to imagine. […] I would probably have lost the sense of living. I would get depression, stress. It is very difficult for me to get out of depression. All the more I know this. I would probably withdraw into myself” (Irina, 22). Some women indicated that their own or others’ responses may be more severe and lead to self-harm, as seen in the quotes below:

“If I was alone and a positive result came out, I would immediately go into depression. That is, if I had such a moment, I would have killed myself. I will not be treated further, and will not receive any knowledge. I’d better kill myself on the spot when I find it out. It’s better for me not to be alone, because I still have fear. […] Right, I would just open my veins on the spot and that’s it. […] If you are sick, it means you will die anyway. Sooner or later, you will die.”

(Maria, 33)

“A person can commit suicide or something like that – this is the most terrible. And maybe their thoughts like “life ends here”, “that’s it, I’ll die”, “I have a disease, I cannot get married”, “I cannot bear children anymore”, “who will offer me a job”, and others.”

(Alex, 26)

Importantly, one woman raised the issue of receiving a false positive test and how that impacted her mental health. She described her experience seeking confirmatory testing after a positive rapid test:

“When they told me that I had a positive [rapid] test result…I felt scalded with boiling water…I had such emotions, I prayed, I hadn’t been sleeping for three days, I went to the AIDS center for confirmation. I do not know if you can understand my state at that time…, but I had such a state, the most terrible one. They made a mistake or the equipment broke down. Those were awful three days, it was good I had a little child. Otherwise I would have thrown myself down from the bridge… Yes, I passed it later, had been waiting for the result for three days…. I endlessly asked the Lord for an apology for my sins. I went to take my test result and it was negative. I was so glad, of course.”

(Marina, 35)

Barriers to Confirmatory Testing and Linkage to Care After HST

Despite these concerns, participants reflected on what steps they would take if they received a positive self-test result in terms of confirmatory testing and linkage to care. Only a few participants stated that they would not seek follow-up testing or care; for example, one participant said: “I would repeat the same test, but I would not go to a doctor. If this test is positive for the second time, what’s the use of visiting a doctor” (Aigul, 37). Several women said that they would seek confirmatory testing after a positive HST at the AIDS center or from a doctor, more generally. For many of these women, the desire to receive confirmatory testing with a medical professional was based on a belief that HST results may not be accurate: “It could be that you did something wrong. You don’t know if this system is 100% reliable. Therefore, I would probably go to find out - yes or no. The test can be incorrect” (Valentina, 32). A few participants said it might take one more rapid test before they were encouraged to seek a confirmatory test: “I would go to complete the test once more, and after that doctors would tell me the exact result” (Elena, 30).

Participants also raised some concerns regarding the process of confirmatory testing and linking to care, including the logistics of clinical hours, and privacy concerns at a confirmatory test: “If I do it at night, somewhere at 23:00 at night and I got a positive result, I would not know who to contact. Doctors, I think, do not work at this time. Naturally, you will have to wait till morning… I don’t know, it will be stressful” (Diana, 23).

Policies were also raised as structural barriers to confirmatory testing and linkage to care after HST. Some referred to Kazakhstan’s regulations regarding access to public polyclinics, which require individuals to register at specific clinics based on their residence of record, requiring identification documentation. One participant said “There is nothing to do here without registration. There will be no polyclinic services, there will be nothing” (Kristina, 35). Another described the process as follows: “I submit an application on the internet, or make an appointment at a private clinic. […] Public services – it takes a lot of time and you have to wait in the queues and be registered there. It’s easier to visit a private clinic” (Alex, 26). This process of clinic registration was both necessary and onerous; however, the need for documentation, in particular, was presented as a major barrier for some participants. One described a non-Kazakhstani colleague trying to access services at a friendly clinic without documents: “She was very scared that she might be sent back. She was from Uzbekistan, and she was scared that they would send her back home and tell her parents what she was doing here” (Elena, 30) For other participants, this policy seemed at odds with promises of confidentiality of services: “They say all is confidential, but still ask for documents and about citizenship” (Alina, 29).

Additional Health and Social Service Needs

When asked what medical and social services beyond HST and linkage to HIV care were needed, participants had a few suggestions which emphasize the marginalization and lack of access that many WESUD face. Many wanted access to gynecological services. One participant explained that costs were a major barrier: “Visiting a gynecologist and getting tested is very expensive, I’ll tell you, and many of our girls cannot afford it because of this. It’s an expensive pleasure” (Almaty FG). Other participants expressed a high need for psychological services due to their occupation: “Girls in our community need psychological aid, talking to someone is the main problem.” Another expressed the risks more starkly: “Our work kills us psychologically” (Almaty FG)

Participants also expressed a need for legal advice, particularly related to policing. One participant said legal training would help her feel more confident should she be stopped by police: “I had this sort of experience and I was scared. I didn’t know how to behave without hysterics to prove that they had no right to “pack” me and take me somewhere” (Almaty FG). These suggestions emphasize the multiple intersecting health, mental health, and social service needs of this population.

Discussion and Applications to Practice

Due to the high risks that they face, WESW who use drugs in Kazakhstan need adequate opportunities for HIV testing, to become aware of their HIV status and seek appropriate care. In the interviews and FGs conducted, we found that HST holds great potential to increase knowledge of HIV status among this population in Kazakhstan and that HST was perceived to be an appropriate and acceptable testing approach for WESW who use drugs. However, supportive programming tailored to the needs of WESW may be needed to maximize its impact and thus expand the uptake of HST among this key population. The participant accounts emphasized that HST can mitigate several barriers that WESW who use drugs face in accessing HIV testing, including logistical issues, as well as issues related to stigma. Our interviews also emphasized the need for programs accounting for HST- and sex work-specific challenges. Almost all women interviewed expressed interest in learning how to conduct self-testing for HIV. One key finding is that many expressed interest in sharing information about HST with their friends or co-workers, indicating that WESW in general would be interested and that communication around HST is acceptable and a potential route of dissemination.

In our study, as in others (Chanda et al., 2017), anticipated stigma discouraged women from accessing testing services or frequenting testing sites, as they worried about being seen by those in their community, and of others learning of their sex worker status or potential HIV status. Considering the myriad of barriers to frequent testing for women who trade sex and use drugs, both logistical and those related to stigma, HST may provide a way to mitigate some of these harms. For instance, HST directly responds to noted challenges around time and transportation as it allows individuals to choose when and where to test. HST is also a potentially empowering tool that allows women to control the circumstances of their testing and maintain privacy so that they can avoid potential stigma from others. To build an HST program that specifically targets women who trade sex and use drugs, these factors must be taken into consideration. Alongside these concerns, there is a need for attention to linkage to care for confirmatory testing and treatment, if needed, in the case that someone has a positive test, especially as women also talked about logistical concerns and fears in health care settings and with providers, in particular.

Participants though identified several practical and psychosocial barriers, anticipated stigma in particular, to seeking HIV testing at other locations, suggesting that while self-testing may be ideal for this population, confirmatory testing will remain a challenge absent further stigma-reducing interventions. Our findings emphasize the importance of working with local government and medical organizations to ensure access to self-test kits in pharmacies and other locations. The variety of locations suggested by participants (pharmacies, AIDS centers, and local NGOs such as our recruitment sites) suggests that a single strategy for distribution might not meet all participant needs. Additionally, potential cost barriers must be considered to ensure that HST is accessible to WESW populations. Finally, working with clinics where confirmatory testing would take place to reduce enacted stigma is also crucial to optimizing the impact that HST can have.

Our findings also emphasize the importance of psychological and social support around HST for this population. The emotional burden surrounding the HIV testing process was raised frequently by participants who feared testing positive alone. This suggests the need for participants in an HST program to be trained not only on the logistics of HST, but also on the addition of social/emotional support. Additionally, the concerns raised by a few participants regarding anticipated partner violence should they test positive necessitate a careful incorporation of safety planning into a training program. Resources for IPV are limited in Kazakhstan. Nongovernmental sex worker advocacy organizations are well-positioned to provide this support, having deep knowledge of the lives of sex workers and the expertise to implement supportive programming.

To ensure that HST programs meet the unique needs of sex workers who use drugs, training programs will also need to deal with challenges related to confirmatory testing and linkage to care, which requires women to come into contact with traditional health care facilities. These programs must respond to personal, interpersonal, and structural barriers to this critical next step. In other contexts, linkage to care was increased when community providers/outreach workers visited the homes of participants involved in an HST trial for follow-up (Hayes et al., 2014, 2017; Mulubwa et al., 2019). Our findings reflect other studies that show direct delivery and assistance with HST increase testing behaviors. (Ortblad et al., 2017; Ortblad et al., 2019). In addition, social support can aid in linkage to care after testing. There are very real concerns about how to support women using HST and keep them healthy and safe should they receive a positive test outside of a clinic. In other contexts, similar concerns have been raised, but studies show that support from peer mentors, outreach workers, and fellow sex workers can be important for mitigating potential negative outcomes related to HST (Beckham et al., 2021). Our findings suggest that WESW who use drugs may need additional support to seeking confirmatory testing and treatment should they receive a positive result on a self-test.

While many participants said they would seek a follow-up confirmatory test at a clinic or AIDS center if they self-tested positive at home, there were a few who expressed hesitation to do due to anticipated stigma and isolation from peers. Additional barriers to seeking confirmatory testing included fear of state documentation and police; significant overlap between this and other barriers. The isolation and disempowerment of sex workers, enforced by the threat of violence, create barriers to both negotiating safer sex practices and accessing testing services. A recent report from the NGO Amelia, based on Taldykorgan, Kazakhstan, found that WESW reported rights abuses by police and/or medical staff, including threats, abuse, and extortion; half reported forced HIV testing; and over a third were refused medical care, all of which inhibit HIV testing and care (Amelia – NGO, 2018). Combined with stigma in medical centers, vulnerability is increased and access to services/testing decreased. Our findings show that stigma is a powerful deterrent to formal testing, service, and care access for WESW in Kazakhstan. The development of detailed post-test protocols is crucial to ensuring that women have the tools to overcome these potential barriers. Here, again, local NGOs could offer important support.

Our study has many strengths, including multiple types of quantitative and qualitative data collection (surveys, IDIs, and FGs), secure and confidential data collection, and collaboration with local and trusted NGO partners. Nonetheless, our study has some limitations. First, since recruitment was done by NGOs, participants may have been more likely to have accessed NGO services and harm reduction programs, and therefore may not be representative of those WESW who use drugs in Kazakhstan who are extremely marginalized. However, we also recruited participants through snowball sampling, which may have reduced the impact of this on the sample. As with all interview research, our interviews may have been subject to response bias. We conducted interviews virtually, which meant that we were not able to control the space where the interviews occurred (e.g., some interviews occurred in women’s workplaces or apartments) which might have influenced their responses. On the other hand, this may have increased participation among women who would not typically have come to a research site or NGO to engage in the research. In addition, the FGs were conducted virtually through Zoom/Jitsi software (using audio only no video), which may have encouraged participants to speak more openly about their experiences. Unfortunately, this was also a limitation; as FG participants were not visible we were unable to link any demographic data to their contributions. Finally, as with all qualitative research, the sample may not be representative, as noted above, and recall of events over a lifetime or even the past year may have been compromised, in particular as the COVID-19 pandemic was unfolding during data collection.

There is an urgent need to address HIV among WESW who use drugs in Kazakhstan. This pragmatic analysis confirmed that HST is perceived to be acceptable and feasible for WESW who use drugs in Kazakhstan and that it can be a useful and appropriate intervention to increase HIV testing and consistent testing among this key population. It is crucial to begin disseminating HST among WESW who use drugs to ensure that they are not left out of this important advancement in HIV screening. However, our findings emphasize the necessity of HST training programs that reflect the specific needs and preferences for this population. Additional structural, community, and institutional support are needed to best support a national HST program for WESW in Kazakhstan.