Data Collection Procedures

As previously described,[46] potential participants were recruited from sex work establishments such as bars, hotels, street corners, and truck stops in Tecun Uman. Guided by principles of purposive sampling,[83] we sought to recruit women who represented a range of research participation experiences (e.g., research-exposed vs. naïve), work venues (e.g., indoor vs. outdoor), migration status (e.g., international migrants, internal migrants, local residents) and age. Recruitment was conducted by trained female outreach workers from a local community-based HIV prevention organization (EDUCAVIDA) with extensive experience working with sex workers and other key populations. During outreach, outreach workers unobtrusively approached women to explain the purpose of the study and assess eligibility and interest in participating[46].

Following informed consent, women completed a brief survey eliciting information on socio-demographics (e.g., age, education), migration history (e.g., migration duration, country of origin), and prior research experiences (e.g., previous research experience, types of studies). Focus groups and interviews were audiotaped and conducted in private offices or a location of participants’ choosing (i.e., safe and confidential spaces where women felt they could share their perspectives)[46]. All participants received $10 USD in in-kind goods (e.g., telephone card or household/personal items of their choosing), condoms, HIV/STI prevention information, and referrals to medical care and social support services (e.g., HIV testing, hospitals, women’s shelters). All study materials and procedures (i.e., recruitment and informed consent procedures) were designed to assure and remind participants that our research team was not associated with government authorities such as police or immigration, as well as to assure participants of confidentiality of the data. For example, outreach workers explained to participants that confidentiality was protected through the use of study ID codes (rather than names), that all identifying information was removed from the transcripts by a team member prior to the analysis/dissemination, and that careful measures were in place to safeguard data storage.

Of the 33 study participants, 27 participated in a group session and 6 women who preferred to share their opinions privately participated in individual, face-to-face interviews. We conducted 10 focus groups, with between 2–5 women per group. Focus groups were led by experienced moderators/outreach workers who introduced topics and monitored group dynamics to facilitate representation of different perspectives [84], using group interactions to generate insights [85]. Focus groups and interviews were based upon a loosely structured guide that was iteratively revised to explore emergent themes, as previously reported[46].

Focus groups and interviews began with defining research.[46] Given that most prior research with sex workers in this community has been epidemiological (e.g., quantitative survey and HIV/STI serological testing), discussions focused on epidemiological, non-intervention research where possible. In brief, participants were asked to share examples of HIV research they were aware of or had previously participated in. Moderators were trained to clarify the differences between research and HIV/STI services (e.g., testing, educational workshops) to address challenges that emerged in operationalizing the concept of ‘research,’ particularly for participants without prior research experience. For example, during initial focus groups, when asked about experiences with research studies, some participants began to discuss their experiences with routine HIV/STI testing. These challenges were often linked to the fact that epidemiological studies are traditionally conducted at municipal clinics where HIV/STI care is provided. As previously described [46], this was addressed by operationalizing ‘research’ (vs. service provision) using examples of HIV research typically conducted with sex workers locally. Participants were asked to share examples of HIV research they were aware of (or previously participated in); facilitators clarified and explained the differences between research and HIV/STI services (e.g., testing, educational workshops) to address challenges in operationalizing the concept of “research.” As previously reported[46], during the interviews and focus groups, discussion topics and questions centred around the themes of barriers and facilitators of participation in HIV-related research (e.g., confidentiality, mistrust, anticipated benefits), related contextual influences (e.g., migration, work environments, manager/peer roles, interactions with police), and recommendations for future research (e.g., recruitment, researcher roles).

In addition to initial focus groups and interviews, 3 follow-up sessions (2 focus groups, 1 interview) were conducted with a subset of participants (n = 7). Women who expressed particularly diverse and/or strong opinions during initial focus groups or interviews were invited for follow-up sessions, which were used to more deeply explore and elaborate upon concepts that emerged during earlier interviews and focus groups, as well as to conduct “member-checking” (i.e, to gather participant feedback on preliminary findings and their interpretation).

Data Analysis

Focus groups and interviews were transcribed, translated and accuracy checked by bilingual staff and personal identifiers were removed. Transcripts were managed and coded in NVivo Version 10 (QSR, Australia). Coding employed a detailed coding scheme that was collaboratively designed and iteratively revised by the principal investigator (SG) and project coordinator (TR). Using the constant comparative method,[86] we began with open coding to initially describe the structure and key themes that emerged in the data (e.g., key perceived benefits and risks related to participation in HIV research)[46]. As migration experiences emerged as a key issue that could promote or inhibit research engagement, resulting from the unique social and structural contexts experienced by migrant sex workers, we subsequently used axial coding to group and regroup the data until a subset of themes emerged which articulated key research-related ethical challenges and opportunities related to the central theme of migration. While nine participants were international migrants, an additional 21 were internal migrants; given that migration-related issues frequently emerged within discussions of research-related barriers and facilitators among migrants and non-migrants alike, our analysis included the full sample to fully elucidate the unique migration-related social and structural experiences and concerns that were articulated by sex workers during interviews and focus groups.

Participant Characteristics

Participants’ median age was 29 years old and almost three quarters had primary school education or less (Table 1). Countries of origin included Guatemala (n = 24), other Central American countries (e.g., Honduras, El Salvador) (n = 7), and Mexico (n = 2) and among Guatemalan participants, the majority were internal migrants from primarily rural communities. Two-thirds of participants reported engaging in sex work in entertainment venues (e.g., bars, cantinas), and the remainder operated in a more mobile/independent capacity out of locations such as truck stops, parks, and hotels/motels. The majority (70.0%) were registered as sex workers. In terms of prior research participation, 20 women had previously participated in research; 19 had received HIV/STI testing, 14 participated in in-depth interviews, 10 participated in a quantitative survey, and only five had been involved in focus groups.

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Table 1. Characteristics of participating female sex workers (N = 33), Tecún Umán, Guatemala, 2013–2014.

https://doi.org/10.1371/journal.pone.0155048.t001

Thematic Results

Major themes emerging in this study included key ethical challenges and opportunities related to: mistrust and fear rooted in the social isolation frequently faced by recent migrants; intersecting concerns related to immigration status, criminalization, and sex work regulations; and migration-related benefits and risks of HIV/STI testing (e.g., immigration implications, stigma).

“Almost Everyone Is Just Passing Through”: Mistrust and Fear Related to Transience, Mobility, and Social Isolation

International migrants typically left their hometowns and migrated Northbound in search of a better life for themselves and their families, fleeing poverty, violence, and gender inequalities. Most had migrated alone, and those with children had typically left them with family (e.g., grandmothers) in their home communities. For most, the period of initial arrival in Tecún Umán was characterized by intense social isolation, and most described feeling socially isolated as a powerful barrier to research participation (i.e., due to not knowing whether or not researchers are trustworthy).

Previous work with sex workers in this setting has elucidated the importance of rapport and the cultivation of meaningful relationships with research teams as a critical precondition for their ethical engagement in HIV research.[46] However, analysis of migrant sex workers’ narratives in the current study revealed how the social isolation experienced by recent arrivals to the community often resulted in mistrust and prevented opportunities for the development of rapport with researchers:

You come here as a newcomer, you don’t trust anyone and you can’t be talking about personal stuff. I think this can be a reason not to come here with you.

[International migrant, Honduras, 1 month since arrival]

High levels of mobility and the relatively short duration of stay of migrants in border communities such as Tecún Umán also limited opportunities for the establishment of meaningful relationships or rapport with other sex workers, service providers, and researchers. As the following participants noted when asked about the reasons that migrants might be reluctant to participate in research:

An immigrant is here one day and not the next. That is a problem because almost everyone is just passing through.

[Internal migrant, 22 years since arrival]

P2: Sometimes the girls are here not for long, a week, two weeks and… good-bye…they leave…they are just here for 8 days, 15 days, 20 days; the most they stay is a month, right?

P1: If they don’t like it, they only stay 2 to 3 days and good-bye.

Q2: So it would be difficult to establish contact with them if they’re here just a few days?

P2: Yeah.

[Internal migrants, 4 years and 8 days since arrival]

Some women also discussed how being a migrant offered some advantages in terms of the anonymity migrants experience in the community relative to local residents. Whereas local residents went to great lengths to conceal sex work involvement from family and community members, migrants without significant local social ties could be less concerned about the social consequences of disclosing sex work or other potentially stigmatizing behaviors as part of research participation:

I know a lot of people from other countries and they are even more open than Guatemalans…they would participate because since they are in Guatemala, no one knows them. Aha. Like they say, they don’t give a shit about it.

[Internal migrant, 22 years since arrival]

“It’s the Fear You Feel Being a Foreigner”: Concerns Regarding Immigration Status

Participants in this study worked in a context characterized by frequent immigration and police raids of sex work establishments. Migrant sex workers’ concerns regarding HIV research participation often related to broader structural considerations including immigration status, migrant sex workers’ disproportionate vulnerability to punitive legal/policy consequences (e.g., arrest, deportation), and human rights abuses by government authorities. One participant explained: “They [migrants] do have more risk… because they don’t carry papers with them, do not have a way to identify themselves, they’re in the streets…Here in Guatemala, a foreigner is looked at [differently]”.

Fear of persecution by immigration authorities was a serious concern within migrants’ day-to-day lives, with profound implications for their ability to safely engage in research and HIV/STI services. All of the migrant sex workers interviewed were either undocumented or had transit permits, but lacked work authorization. As such, they greatly feared the potential impact of raids on their work establishments, which could lead to deportation (most had been previously deported). One participant noted:

If they [immigration] found out they’re Hondurans, they would take the poor girls away….here in Guatemala it is prohibited for foreigners to work.

[Internal migrant, 15 days since arrival]

Concerns regarding immigration status and fear of deportation were found to have direct and indirect consequences for the responsible conduct of research with migrant sex workers. Participants noted the tendency for international migrants to worry about the potential for researchers to be associated with immigration authorities–a sentiment most commonly expressed within the context of being approached by an unfamiliar research team. Women shared recent experiences in which this had been the case for their peers during recruitment for HIV-related studies:

The last time [her immigrant peers were approached by researchers], they felt distrust because they thought they were going to be turned in to immigration or something like that.

[Internal migrant, 3 months since arrival]

Findings also revealed that migrants often mistrusted researchers due to the possibility that sensitive information (e.g., regarding sex work, immigration status) might be shared with immigration authorities, resulting in negative immigration consequences. These considerations were often contextualized within discussions of the preference of migrants in another country to ‘stay under the radar’ (e.g., by limiting the development of social networks, avoiding discussions of immigration matters) to reduce the possibility of negative interactions with government authorities. For example, a recent arrival reflected on how such safeguards employed by international migrants could adversely impact their participation in research and other opportunities for social connections, further reinforcing social isolation and mistrust:

[You act] private, you don’t open up that much…because our fear is that they will send you back to your country with nothing.

[Undocumented migrant, Honduras, 5 days since arrival]

During fieldwork, our team observed firsthand the effects of such crackdowns and raids of sex work establishments in the region, noting the ways in which raids could amplify fear and mistrust among migrant sex workers. Interviews and focus groups conducted following crackdowns also indicated how these structural forces could enhance the ethical and practical challenges of conducting research with migrant sex workers:

They feel mistrust right now because immigration just came and they’re traumatized…This young girl who just arrived, I told her to come [to a focus group] but she was afraid the police might show up. I told her there was no danger…but she said no.

[Internal migrant, 4 years since arrival]

“It’s Fear of the Police”: Intersecting Concerns Regarding Policing and Sex Work Regulations

Concerns regarding interacting with immigration intersected with migrant sex workers’ fear of persecution by police (e.g., related to their sex work involvement). Human rights abuses by police and immigration officials–including extortion, abuse of power, and physical/sexual violence–were described as an overarching concern during migration, as well as in the workplace upon arrival in migration destinations (i.e., Tecún Umán). While sex work remains criminalized in Guatemala, it has been historically tolerated under public health regulations that require workers in formal establishments (e.g., bars, clubs) to register and receive regular HIV/STI testing. While registered sex workers were often less susceptible to police abuse or harassment, those without registration greatly feared detention, abuse or extortion by police. An unregistered worker described the fear she experienced upon being approached by outreach workers to participate in research for the first time:

I felt bad…I asked, “Who are those people, and what if they are here to catch us?”…Because we don’t have any papers [proof of registration] to back us up, right, and the police may come and get us. I thought maybe one of you could say something to the police…yes, I was worried and afraid.

[Internal migrant, 7 years since arrival]

The threat of persecution by police emerged as a critical human rights theme that exacerbated ethical and practical challenges related to migrant sex workers’ research engagement. Though concerns such as policing have been previously shown to negatively impact both migrant and non-migrant sex workers,[21, 33, 36, 87] the unique structural circumstances faced by migrant workers (e.g., social isolation, lack of work authorization) exacerbated such concerns. For example, migrant sex workers’ often feared that researchers could be affiliated with the police, potentially resulting in negative consequences such as deportation:

One [peer] asked me [with respect to the researchers’ identities]…“but it isn’t the police, is it?” I told her it wasn’t at all! “How can you think it’s the police?” I asked. She said, “It’s just that I’m afraid that they might send me back to my country.” I said she shouldn’t be afraid, that she shouldn’t worry because it’s not the case…When I was first invited to come, I also thought badly. I thought it was the police too.

[International migrant, 7 months since arrival]

As a response to immigration-related fears and a desire to limit contact with government authorities, some migrants restricted their mobility, moving further outside the reach of researchers and health services:

They’re afraid to come. I told one of the newcomer girls not to be afraid, because when she saw the city police car she said: ‘there comes the police!’ She’s afraid to go out.

[Internal migrant, 4 years since arrival]

As previous researchers have noted, punitive policy and legal environments may ‘push’ difficult-to-reach populations (i.e., migrants, sex workers, people who use drugs, and trafficked persons) further underground, exacerbating challenges to research and health/social services delivery.[39, 67, 88, 89]

Benefits and Risks of HIV/STI Testing for Migrant Sex Workers

We previously reported on how sex workers in Tecún Umán perceived the HIV/STI testing and prevention access (e.g., condom demonstrations and negotiation skills) typically offered by epidemiological HIV research studies to be potential benefits of research participation.[46] Here we focus on the ways in which migrant status was perceived to pose unique concerns and benefits for HIV/STI testing accessed within the context of research. HIV/STI testing and counseling was noted as particularly needed for recent arrivals from other countries and rural communities, who often had limited (if any) previous exposure to HIV/STI prevention or testing, as most had not engaged in sex work prior to their arrival and came from more conservative communities where access was constrained. When asked about the reasons that migrant sex workers might participate in research, the following participant noted access to HIV/STI testing and prevention to be critical motivators:

You come and you’re a newcomer and you get orientation about how to use a condom, it’s good to do HIV testing, to have all those tests done, because there are people who come here and have never worked in this business. So it’s good for newcomers to go.

[Internal migrant, 3 months since arrival]

However, HIV testing offered through research studies also carried potentially negative consequences due to the social, economic, and legal consequences of a potential positive test result[46]–concerns which were exacerbated for migrants. In addition to fear of loss of employment upon testing positive, migrants also expressed concern about deportation and the multiple forms of stigma that they anticipated a migrant sex worker living with HIV would be subject to:

There are some of us who say, “Ah, we are foreigners, and if we get the [HIV] tests done and they turn out bad, they’re going to send us to hell, because they’re going to say that we’re infecting people here and we’re not even from here. So, then they can go and tell immigration,”

[International migrant, Nicaragua, 2 years since arrival]

Our fear is that they will send you back to your country with nothing. You came over here with nothing, and returning with nothing—that’s our fear.

[Undocumented migrant, Honduras, 5 days since arrival]

Fear of negative consequences of HIV testing was often part of broader discussions of the ways in which sex work regulations have been historically enforced, including through raids and inspections of sex work venues. An international migrant described the ways in which police verified compliance with sex work regulations in indoor venues and how this intersected with immigration enforcement:

The police come and demand documents, tests, everything—they demand the HIV test and if they are from another country, they demand their passport…they wanted to arrest me, because I just arrived here…and I don’t have the papers.

[International migrant, Honduras, 4 years since arrival]

Implications for Future Research and Interventions

Findings highlight the need for researchers to develop population-tailored and contextually sensitive procedures to address fears related to immigration and criminalization; reinforce positive and non-stigmatizing relationships with migrant sex workers; and support policy shifts that move away from punitive models towards approaches that are more congruent with promoting migrant sex workers’ rights and wellbeing. As in other settings, while significant efforts have been made by sex work organizations in Guatemala to promote recognition of sex work from a labour perspective, special efforts may be needed to engage migrant sex workers.

To promote ethical, valid, and relevant research with marginalized populations, and especially when conducting research in new or unfamiliar global contexts, collaboration and meaningful exchange between researchers and communities is needed.[103–106] Sex workers’ organizations have often used the phrase “nothing about us without us” to highlight the critical role of sex worker leadership and engagement to inform research, programs, and policies–a “best practice” that is embraced by HIV researchers in numerous settings.[25, 94, 106–111] However, this study identified the ways in which social isolation, fear, and mistrust among recent migrants can preclude the development of social trusts or research participation,[1] raising questions regarding how to best represent and engage migrant populations in health research. Past research with non-migrant populations has demonstrated the importance of peer-led or community-based models for enhancing the responsible conduct of community- and policy-relevant research.[44, 46, 103, 106, 110, 112, 113] As this issue has rarely been critically examined with respect to the engagement of highly mobile migrant populations in research, future efforts to identify appropriate models for the democratization of knowledge production and exchange among marginalized migrant populations remain needed (e.g., how to ensure meaningful community engagement in the design, conduct, and dissemination of research; feasibility of peer designs for mobile groups).

Strengths and Limitations

Several potential limitations should be considered in interpreting our study results, including our sample composition. Firstly, there may be limitations to relying on accounts of those willing to participate in research to explore reasons for reluctance to research participation. Given that our findings were restricted to the perspectives and narratives of sex workers who agreed to participate in the current study, it is possible that the experiences of women with stronger concerns regarding research participation are under-represented. However, during interviews and focus groups, we asked questions pertaining to individual experiences in the past and present (i.e., reasons for reluctance to participate in the past), as well as broader peer and group experiences. In doing so, we were able to successfully elicit important insights regarding potential barriers to research for sex workers–including migrants (i.e., fear of police, mistrust)–who may have been underrepresented within our study sample. Additionally, while we engaged in both indoor and outdoor outreach to recruit a diverse sample of migrant and non-migrant sex workers to participate in the current study, a high proportion of participants within our sample identified as registered sex workers. While this may reflect the high proportion of venue-based SWs within the local context generally, since this study was completed, our team recently conducted an epidemiological study elucidating high unmet need for healthcare among unregistered, hard-to-reach sex workers who work in informal settings; future research investigating the experiences of this under-served group in terms of both research and service provision is recommended. Finally, we recognize that community and participant perceptions of our roles and expectations as researchers could result in an unwillingness to discuss problematic or unethical research practices; as part of our reflexive stance as qualitative researchers, moderators and research staff were trained to be aware of and mitigate this through numerous strategies, including cultivating an open and reciprocal interview atmosphere, ensuring that the PI was not present for all of the sessions, and engaging in long-term fieldwork to build trust within the community. Suggested approaches to mitigate this in future research could also include the application of long-term ethnographic methods, interviewing outreach workers and research staff about their experiences, and having individuals who have not previously engaged in research within the study community lead interviews or focus groups.