Sage Journals: Discover world-class research

Abstract

Although undocumented immigrants represent a particularly vulnerable population, they are underrepresented in health research. To facilitate the engagement of undocumented immigrants in health research, in this article, we describe the methodological issues encountered while conducting a qualitative study where we sought to understand the health care–seeking experiences of undocumented African immigrant women in the United States. Strategies employed in addressing methodological challenges and recommendation for future studies will also be discussed.

Keywords

community-based research feminist research social justice emancipatory research critical theory

Introduction

According to recent estimates, there are over 11 million undocumented immigrants in the United States (Krogstad & Passel, 2014). Ample evidence exists, indicating that undocumented immigrants experience structural and cognitive barriers to accessing health care. These include language barriers, financial barriers, and fear of accessing health-care institutions as a result of their undocumented status (Dang et al., 2012; Hacker et al., 2015). Undocumented immigrants consequently experience disparate outcomes across several health measures such as preventive care (De Alba et al., 2005), breast cancer diagnosis and treatment (Castro-Echeverry et al., 2013), HIV treatment initiation and retention (Poon et al., 2013), and maternal child health (Reed et al., 2005). They are also known to be at a greater risk of intimate partner violence (Hass et al., 2000).

There is a need for health researchers to continue to examine the relationship between immigration status and social determinants of health and health outcomes. This would help to determine the tailored interventions that could be most effective in addressing the unique health needs of undocumented immigrants, given the complex barriers that exist to their health-care access and resultant disparate health outcomes. The paucity of literature on the actual experiences, as well as the health outcomes of undocumented immigrants, poses a barrier to the development and testing of interventions to address health needs in this population. This is in part due to the challenges associated with engaging undocumented immigrants in research. Investigators conducting research with undocumented immigrants often encounter substantial challenges in recruiting and gaining the trust of participants (De La Rosa et al., 2012; Shedlin et al., 2011). Also, evidence shows that, when immigrants are sampled for a study, investigators are likely to veer away from assessing participant’s immigration status to avoid creating discomfort and stirring mistrust (Hernandez et al., 2013; Lahman et al., 2011). One common approach researchers use to circumvent the challenges associated with assessing immigration status is to use proxy indicators of undocumented immigration status, such as lack of social security numbers, type of health insurance, or self-reported concerns about deportation—all factors that may not necessarily be exclusive to undocumented immigrants (Young & Madrigal, 2017). Consequently, such approaches run the risk of providing inaccurate representation of health in undocumented immigrants. There is therefore a need for researchers to explore more effective ways of engaging undocumented immigrants in research, while also ensuring that the research process does not cause them undue harm.

To this end, methodological papers based on studies with immigrants with precarious status are helpful in offering insight into strategies and important considerations for studies with undocumented persons. A few authors have addressed this topic in their methodological papers by providing helpful recommendations to address challenges, based on their own research with undocumented immigrants (Fete et al., 2019; Lahman et al., 2011; Shedlin et al., 2011). Some challenges identified in the existing literature include difficulty identifying target participants, community suspicion and fear of stigmatization, difficulty establishing community partnerships, and issues relative to cultural idiosyncrasies (Fete et al., 2019). However, little attention has been given to this topic across various sociopolitical and temporal contexts, particularly in the current political dispensation that has invoked long-term fear among many ethnic minority populations. Additionally, existing literature is largely based on studies focused on methodological issues with immigrants of Hispanic origin, yielding little known about research engagement with undocumented immigrants of other backgrounds, including Africans. Given that Hispanics are the largest immigrant population in the United States (Radford, 2019), studies with African undocumented persons may be more challenging, simply by virtue of comprising a smaller segment of the immigrant population.

To address the gap, in this methodological article, we share insights into the challenges faced and lessons learned from a qualitative study that sought to gain an in-depth understanding of the health care–seeking experiences of undocumented African immigrant women in the United States. Drawing on methodological reflections before, during, and after the study, our aim is to share information to help facilitate ethical engagement of undocumented African immigrants. First, background information will be provided on African immigrants and health research, then pertinent contextual information will be provided on the conceptualization of undocumented status in the United States to illuminate how historical, social, and political processes have created a context where “undocumentedness” is an “othered,” marginalized identity. Next, the study characteristics will be discussed, followed by a summary of the lessons learned from the process of conducting this study with undocumented African women.

Background

Black African Immigrants and Health Research

It is estimated that there are 4.2 million Black immigrants living in the United States, with roughly 600,000 being undocumented (Anderson & Lopez, 2018). The African immigrant population, consisting of 2.1 million people, or 39% of the foreign-born Black population, is one of the fastest growing but understudied immigrant populations in the United States (Anderson, 2017). Research on the health of Black African immigrants in the United States is important, as this population experiences vulnerability in unique ways and for various reasons. First, even though Black immigrants arrive in the United States with a health advantage, termed the “healthy immigrant effect” and largely attributable to positive health selection of the U.S. immigration process, this advantage erodes over time. The health outcomes of Black immigrants eventually begin to mirror health disparities seen in the African American population (Read & Emerson, 2005). For example, there is growing evidence that African immigrants have worse cardiometabolic health, compared to African Americans (O’Connor et al., 2014; Ukegbu et al., 2011).

The healthy immigrant paradox and its decline over time also indicate that there are structural factors at play, such as structural racism that impact health and socioeconomic outcomes of Black immigrants in the United States (Krieger, 2014). Additionally, the difference in disease burden between African immigrants and African Americans suggests that there are meaningful differences in predictors of health status among the two groups (Commodore-Mensah et al., 2018). However, commonly used sampling strategies for studies often obscure the differences among Black immigrants and the distinctions between Black immigrants and individuals who identify as African American. The tendency is to aggregate all participants of African descent as “Black or African American.” This obscures the heterogeneity in sociodemographic characteristics, health beliefs and behaviors, and other known determinants of health thus, making it challenging for researchers and health-care professionals to obtain an accurate picture of the realities and the health status of Black immigrant populations (Commodore-Mensah et al., 2015). Hence, there is paucity of robust data on health among African immigrants across various health indicators.

Given what we know about the relationships between social determinants of health, such as educational attainment and health outcomes, variations in characteristics of social determinants can have implications for health outcomes and for the appropriateness of standardized health interventions that do not consider the unique needs of certain populations (Marmot & Allen, 2014). In fact, there is some evidence suggesting that African Americans, African immigrants, and Afro-Caribbean immigrants, respectively, have unique social determinant characteristics that impact hypertension and diabetes prevalence (Commodore-Mensah et al., 2018). Both social and structural factors that heighten African immigrants’ vulnerability to poor health outcomes warrant attention. More importantly, considering that Black immigrants are disproportionately impacted by immigration enforcement practices (Morgan-Trostle & Zhang, 2016), more attention needs to be paid to the unique vulnerabilities that undocumented African immigrants may experience in the United States.

The Political Conceptualization of Undocumentedness as a Marginalized Identity

The United States has paradoxically been recognized both as a nation of immigrants and a nation with a long-standing history of xenophobia and anti-immigrant hostility (Takaki, 1989). The marginalization of immigrants, based on their immigration status, is part of a larger, historical intolerance toward immigrants endemic to the United States (Jaret, 1999; Johnson, 1996). Historical and current opposition to immigrants has manifested in the form of policies and practices sanctioned by the government as well as social attitudes of the mainstream public (Arnold, 2007; Johnson, 2000; Nunez, 2013).

The U.S. immigration policy has historically functioned to facilitate the entrance of certain groups into the country, while excluding other groups (Yakushko, 2009). In addition to national origin, immigration exclusion criteria have targeted groups, based on literacy level, economic status, criminal history, race, and sexuality (Johnson, 2009). Although the use of explicit exclusion based on racial and national identity has been abolished from immigration policy, current immigration practices still have racial undertones (Johnson, 2009) that impact who enters the country and which immigrants are policed and criminalized (Arnold, 2007; Johnson, 2000). The existence and institutionalization of racism have been discussed at length by immigration scholars (Arnold, 2007; Johnson, 2000). And its presence in the realm of migration is also evident in the discourse on immigration policy. Embedded in the text of these policies is language wrought with racialized tropes. Terms used to refer to undocumented immigrants, both in immigration policy and in political discourse, include “illegals,” “illegal aliens,” and “aliens,” among other terms that scholars have identified as dehumanizing and exclusionary (Johnson, 1996; Nunez, 2013). Undoubtedly, undocumented immigrants inhabit marginalized spaces within the U.S. context. Ethical research with undocumented populations should thus be a priority.

Sociopolitical Context Preceding and During Study

This study coincidentally was conducted during a time of increased vulnerability for undocumented immigrants. One of the most impactful political events preceding study recruitment was arguably the presidential election of November 2016. The months leading up to the presidential election was fraught with incendiary rhetoric directed toward marginalized groups including immigrants (particularly those identifying as Hispanic), Muslims, and African Americans. While these are long-standing sentiments that pervade the U.S. sociopolitical context, such rhetoric gained prominence in the months leading up to the presidential election and thereafter (Cohen, 2017). The beginning of the presidency of President Trump was marked by the enactment of policies that disproportionately marginalized and stigmatized immigrant communities. These policies included the Muslim ban, the rescission of temporary protection status for many immigrants, the attempt to terminate Deferred Action for Childhood Arrivals protection, and increased funding for the deportation of undocumented immigrants. Immigrant fear was also heightened by the increased visibility of immigration raids targeting undocumented immigrants (Callaghan et al., 2019).

Although the months preceding the elections and the subsequent change in administration were filled with political and social tension, the 2016 presidential election marked an important shift in the sociopolitical climate in the United States. Some authors have framed the impact of the election as “political trauma” due to its disparate impact on communities that already experience marginalization in the United States (Sondel et al., 2018). The election and inauguration have been characterized as a period of heightened fear for immigrant communities at large and particularly for immigrants who are not documented (Callaghan et al., 2019; Wray-Lake et al., 2018). To avoid detection and subsequent deportation, undocumented immigrants made greater efforts to conceal their immigration status, avoid institutions, public spaces, and in some extreme cases, limited their movement, activities, and interactions with others (Callaghan et al., 2019; Olukotun et al., 2019). These realities had implications for the implementation of this study.

Study Characteristics

Authors’ Positioning

First author

In line with qualitative inquiry’s emphasis on self-reflexivity, I (O.O.) believe it is important to openly acknowledge my social location and share my motivation for engaging in this study. The study that forms the basis of this article was my doctoral dissertation study, which I primarily designed and conducted, with guidance from my research mentors—the second author (L.M.V.) and other members of my dissertation committee. I had prior research experience as a research assistant, working with African American women in an urban environment alongside my mentors who are nursing scholars. I position myself as a researcher and health-care professional interested in developing and disseminating emancipatory knowledge and facilitating social change to improve the health of underserved women. As a woman of African descent, the motivation for the study was thus both my personal interest in the subject and a desire to contribute to social change.

Second author

As the dissertation chair for the study forming the basis of this article and as a mentor to the first author, it is important that I identify my own social location and that I also describe what my role was in offering the first author guidance throughout the research process. Being a woman of African descent and an immigrant myself, it was a privilege to provide the first author with guidance on what I believe is an important study that could serve to inform the development of tailored interventions, as well as policy related to immigrant women’s health. As a mentor, I guided the first author in identifying ways to safely recruit women, interview them and then determine how to report the findings in a manner that minimized harm to the women who had volunteered to participate in the study. As a feminist scholar, upholding the dignity of the women participants, as well as the population they represented, was of utmost importance to me throughout the research process.

Methods and Sample

This qualitative, descriptive study was informed by a postcolonial feminist lens, which is useful in examining the experiences of women of color who have historically been marginalized and silenced from the knowledge production process. In a study undergirded by postcolonial feminism, the researcher is intentional about countering the standard researcher–participant power dynamics and creating transformative knowledge that impacts social change (Khan et al., 2007; Mohanty, 1988).

To be eligible to participate in this study, women had to self-identify as being an African immigrant, undocumented, be at least 18 years of age, and be English- or French-speaking. To ascertain undocumented status, prospective participants had to verbally confirm that they were not U.S. citizens, permanent residents, refugees or asylees, or covered by any temporary protected status. Recruitment was open to any woman living in the United States. We managed to recruit a total of 24 undocumented women over an 18-month period (Figure 1). Individual, semistructured interviews were conducted with each participant. Interview questions served to elicit responses on the impact of broader historical and sociopolitical structures on women’s experiences with health-care access. To elucidate information about the health care–seeking experiences of the participants, interview questions focused on women’s experiences within the health-care system, their experiences managing their health, and other health concerns. Demographic measures were also collected using a brief questionnaire. Transcribed interviews were analyzed using principles of thematic analysis.

Figure 1.

Flowchart illustrating study recruitment process.

In relation to the demographic characteristics of the sample, all participants were English-proficient, and their ages ranged from 23 to 55 years. The mean duration of residency in the United States for the sample was 12 years. Participants mostly resided in the Midwestern United States, except two who resided in the South and one who resided on the East coast. Thirteen of the women interviewed reported an annual household income of less than US $19,999. Most of the participants (n = 14) were either casually employed (meaning they had irregular or unstable employment) or unemployed. Four women reported a formal education that includes the completion of high school, while the remainder reported having an associate degree or higher. Additionally, 17 of the women interviewed were not married at the time of the interview.

Methodological Experiences

There are three themes that are descriptive of the methodological challenges and lessons learned from conducting this qualitative study. Some challenges discussed were anticipated and expected, but a few issues and the importance of special considerations for engaging in research with undocumented women became more evident as the study ensued.

Community-based and respondent-driven recruitment: Strengths and limitations

A major expected challenge encountered during the study was recruitment. Based on the recruitment plan in the study protocol developed prior to the start of the study, recruitment was to occur with the assistance of community organizations as well as through snowball sampling. In the initial phases of the study recruitment, I (O.O.) reached out to community organizations that served immigrants, including safety-net clinics, ethnic grocery stores, food pantries, immigrants’ rights grassroots advocacy organizations, and churches. While most were receptive to assisting, this strategy was not effective. It soon became apparent that reaching out to community organizations was only useful in providing me with a platform for distributing information about the study. In these community settings, I distributed flyers, studied information letters, and spoke to groups of clients who accessed the various community agencies, whenever I was afforded the opportunity. Upon recognizing that it would be difficult to identify participants through community agencies, I contacted a national organization for undocumented Black immigrants. An email was sent out to the organization members and other allies on their listserv, resulting in the recruitment of three participants. Despite all these activities, recruitment remained a slow, challenging process.

Another strategy that was considered, in order to increase recruitment rate, was the use of flyers and posters at approved centers. However, after discussions with members of the dissertation committee, some concerns arose about the privacy of prospective participants. The concerns centered on the possibility of individuals being assumed to be undocumented if they were in possession of flyers or were observed to be attentive to flyers posted in public spaces. To address this concern, the recruitment posters outlined that the researcher was interested in recruiting African immigrant women without mentioning immigration status. Interested participants were directed to call the researcher who would then provide additional information about the study and specify that the target population was undocumented African immigrant women. This strategy was useful in getting prospective participants to contact the researcher. A total of five women responded to the flyers and were provided with a brief description of the study. However, upon screening women for eligibility, they mostly did not identify as being undocumented. It was presumed that mistrust of an unknown researcher requesting such sensitive information as immigration status might have played a role in the relative failure of this approach.

Most participants were recruited through the assistance of a trusted community leader and through snowballing. Although community organizations gave me access to their sites to recruit, what was most effective was when trusted community leaders and members referred prospective participants to me. Community leaders were identified through networking and comprised of individuals who held executive positions in community organizations, religious leaders, academics, and researchers who were well respected by specific African immigrant communities. Largely, efforts to recruit participants through public avenues independent of a community leader or other key community members proved ineffective. However, community-based recruitment does appear to still be an effective way of reaching undocumented immigrants.

What I learned was that using community-based and respondent-driven strategies have their limitations. First, decisions made by community leaders and community members on whether to engage in research are impacted by a multitude of factors. Key determinants of research engagement by immigrant communities, based on this study as well as other studies reported in the literature, include safety concerns, affiliation of the researcher, nationality or gender of the researcher, financial incentives, lack of interest, mistrust, and concerns about privacy due to personally knowing the researcher (Dingoyan et al., 2012; Gabriel et al., 2017; Ruppenthal et al., 2005). These are all serious considerations that could impact a researcher’s ability to recruit from such a community, even with the collaboration of community leaders. In the case of my study, participant fear and the community leaders’ concerns about exposing community members to serious harm and invading their privacy were a pervasive source of worry. Immigration status is considered a private and sensitive subject, and some community leaders did not feel comfortable approaching their community members about the subject.

Informed by research literature, broad strategies were implemented to foster a safe research space for the women being recruited. In conducting culturally safe research with marginalized communities, it has been recommended that researchers adopt the use of nonthreatening and nonacademic language and avoid using words such as “researcher” and “investigator” (Sutherland & Fantasia, 2012), while also maintaining transparency about the research process with the participants and their community (Dingoyan et al., 2012). Hence, when describing my study to prospective participants, I often referred to myself as a “doctoral student” or “nurse.” Additionally, to enhance transparency, I ensured that the study objectives, its significance, my motivation for conducting the study, and strategies for protecting participants were clearly communicated to all parties involved. It appeared that transparency and use of nonthreatening language enhanced the process of building trust and developing rapport.

Ethical protection nuances before, during, and after the study

Considering the serious legal implications of discovery and the risk of stigmatization for undocumented peoples, it was vital that, as the researcher, I implement certain measures to protect the participants’ anonymity, confidentiality, and privacy. Human subjects’ protection measures had to be considered continually before, during, and even after the study. Some ideas for protecting participants and mitigating risks associated with participation in research were obtained from prior work on human subjects’ protection of undocumented immigrants.

The informed consent strategy was informed by the recommendations of Lahman et al (2011). The conventional informed consent process requires that an informed consent form details the research procedures and the aims be reviewed with the prospective participant, followed by documentation of consent using the participant’s name and signature. For undocumented immigrants, the documentation of their name raised a concern about the participant’s immigration status being discovered in the event that there was a breach in measures established to protect their privacy and anonymity. To address this concern, a waiver was requested from the institutional review board to obtain consent verbally in lieu of the standard written consent.

There were also legitimate concerns about participants’ anonymity, given that in immigrant communities (where the population of immigrants is small or where immigrants may be concentrated in a specific geographic area) voices on audio files might be recognizable. We decided to delete the audio file immediately after transcribing, as opposed to keeping the file indefinitely. While this might pose a problem if findings are being disseminated through journals that require raw data to be submitted with manuscripts, it is important that the researcher prioritizes the privacy of the participants by making efforts to negotiate with the journal about waiving the data availability requirement. Aside from raw data in the form of audio files, the researcher might also be asked to submit interview transcripts or to deposit them in a publicly accessible repository. Careful consideration should be taken when deciding to submit data concerning undocumented immigrants to a data repository for the same privacy reasons stated above.

My data collection also comprised of a demographic survey to provide contextual information to the interview data. The demographic data were on participant’s age, length of stay in the United States, number of children, highest level of education, annual household income, employment status, region of residence in the United States and region of origin. To protect the participants’ anonymity, I collected the least amount of demographic data necessary for adequately characterizing the sample population and contextualizing their experiences. Acquiring a wide range of demographic data, with very specific categories, (such as city of residence vs. region of residence) could increase the likelihood of the participant being identified and linked to the data.

After data collection was completed, the participants received a US$30 gift card. While this might have encouraged participation, it was not intended to coerce participants or exert undue influence on them. Rather, the gift was intended to be a symbolic gesture acknowledging their commitment and appreciating their participation in the study (Dickert & Grady, 2008). This is particularly important for research with participants who have historically been excluded from the knowledge production process, as this gesture emphasizes the value of knowledge contributed by participants.

Another important consideration for human subjects’ protection is the researchers’ ethical responsibility to appropriately frame the findings. Over the years, questions have been posed about the reporting of research results involving vulnerable populations and how the framing of findings can result in further stigmatization of certain populations. A prime example of this would be a study by Achkar et al. (2008) that revealed how undocumented immigrants are more likely to have a longer duration of symptoms before seeking medical attention for tuberculosis. One clear implication of this study is that decreasing barriers to health-care access for undocumented persons might potentially enhance tuberculosis control; however, a poststudy reflection paper published by Achkar and Macklin (2009) raised concerns about the unintended consequences of reporting these findings, in that this could perpetuate the narrative of undocumented immigrants as vectors for infectious diseases, thus further stigmatizing them (Achkar & Macklin, 2009). This raises an important point about the ethical responsibility of the researcher in ensuring that research findings are framed in a manner that does not further stigmatize vulnerable populations. It is also possible that, regardless of how the findings are framed, there are some readers who may still misinterpret or use the findings to perpetuate their already existing stereotypes about various populations. It may be prudent for a researcher to weigh the benefit of reporting such findings against the risk of stigmatization and further marginalization of the population.

We have found critical theories such as postcolonial feminism to be particularly useful, particularly in qualitative inquiry. If not conducted thoughtfully, research with marginalized populations can have a detrimental impact in the form of retraumatization or secondary trauma, further stigmatization and misrepresentation, particularly when broader historical and sociopolitical contexts are not taken into account (James & Platzer, 1999). Critical theories call for attention to the power dynamics existent in the researcher–participant relationship, while also emphasizing the need to analyze the historical and sociopolitical contexts in which various populations experience their realities.

Implication of sociopolitical context on the data collection process

The current historical and sociopolitical processes have created an environment where undocumented status is a highly stigmatized identity (Del Real, 2019), heightening fear among the immigrant population (Callaghan et al., 2019). Apart from the recruitment challenges discussed above, the nature of the sociopolitical context thus appeared to impact data collection as well. For all participants, the interview was conducted in a private space of their choice, which for all women was their home. Women’s preference to conduct the interviews at their homes was a key indication of their perception of issues pertaining to their immigration status as private and sensitive. Interviews lasted for an hour, on average. One of the important findings from the interviews was that women reported a fear of institutions. This was relevant in relation to women’s perceptions of the health-care system. Findings specific to these narratives are reported elsewhere (Olukotun et al., 2019). While women were not directly asked about their perceptions of research involvement, it is possible that women’s apprehension about having contact with institutional agents could extend to researchers as well.

There were several events during the research process suggesting that fear of engaging in research and communicating with researchers affiliated with educational institutions was a concern for women. For one, it was not unusual for a participant to reach out to the researcher, express interest, and then be unreachable after they were given detailed information about the study. This happened for a total of six women who otherwise were eligible to participate in the study. One plausible reason could be that upon finding out about the nature of the study, and the idea that they would be interviewed, women were no longer comfortable with proceeding with the study.

It is also safe to assume that fear had implications for how women engaged with the researcher and how women responded to the interview questions. Specifically, there were two participants who opted to have some of their interview questions be. For one participant, the question was related to how she navigated challenges associated with her immigration status. For the second participant, she did not feel comfortable having her response on how she coped with mental health concerns be on record.

Lessons Learned

A hostile sociopolitical context and its impact on immigrant communities have obvious implications for immigrants’ engagement with various institutions off the record and, as evidenced by the recruitment challenges encountered in this study, for research engagement and processes as well. Participation in research may indeed heighten an undocumented immigrant’s risk of detection and its associated consequences, which range from social stigma, to legal implications such as detention and deportation (Lahman et al., 2011). However, there currently is a dearth of instructive guidelines, and hence, the onus is on the researcher and members of the adjudicating institution’s review board to ensure that undocumented immigrants participating in research are protected and that potential sources of harm are anticipated and mitigated appropriately. In this regard, the researcher should ensure the use of pseudonyms and consider obtaining verbal consent to minimize the risk of breech of anonymity. The researcher should also be prudent with collection and reporting of demographic data to prevent identification of the participant.

Our experience mirrors that of other researchers who have engaged in research with African immigrant communities and found that collaboration with communities, transparency about the practical utility of the study and its potential benefits to the community, use of monetary incentives, and clarity about strategies to ensure confidentiality were key strategies in successfully engaging African immigrants in research (Commodore-Mensah et al., 2015). Additionally, our study highlights another layer of complexity associated with recruiting undocumented immigrants, including concerns about ensuring participant confidentiality, anonymity, and transparency regarding how the data collected will be utilized.

For our study, referrals by community leaders was the most effective approach. We found that recruitment mediated by community members themselves helped to reassure prospective participants that the researcher was a trusted person. Even then, given the current political climate, some community members were still concerned about the risks associated with the study. In those scenarios, a clear and transparent discussion about the different strategies to protect participants seemed helpful. The utility of community figures in the recruitment process for research that aims to capture the experience of undocumented immigrants has been demonstrated (Callaghan et al., 2019). Community figures that may be helpful include individuals with established relationships in the community, such as community health workers, religious leaders, community leaders, academics with close ties to the communities, and other individuals with established relationships in the community.

Research with undocumented immigrants is particularly challenging in that participants may have to self-disclose their immigration status in order to participate in the study. This inclusion criterion inadvertently excludes undocumented immigrants who are most fearful, most isolated, and, possibly, most vulnerable. We believe that the individuals who participated in the study may be unique and different in meaningful ways from those who opted not to participate. As a result, we might have inadvertently excluded those who live in fear of self-disclosing to anyone. Hence, our sample is not representative of the overall undocumented African immigrant population and possibly excludes the most vulnerable subgroups who are most fearful of disclosure.

Lastly, researchers must be attentive to the implications of the environmental and sociopolitical context to avoid heightening prospective participants’ vulnerability to harm. Awareness of these issues is critical to engaging in ethical research with all immigrants and, most importantly, immigrants with precarious statuses. To truly develop an in-depth understanding of how to ethically conduct research with immigrants, researchers should develop a robust understanding of how immigrant communities are politically, historically, and socially situated in their given contexts by critically analyzing the policies and the empirical evidence that provide insight into their lived experiences. Researchers should also engage in continuous reflection throughout the research process to understand how the sociopolitical context impacts research engagement and how some of these challenges can be mitigated using evidence-based approaches.

Conclusion

Undoubtedly, there is a need for the development of new empirical evidence on how undocumented immigrants experience the current sociopolitical environment and how it impacts their well-being. Reluctance to engage in research with vulnerable populations further marginalizes those communities; hence, studies examining the health of undocumented immigrants are critical, despite the methodological challenges associated with them. Limited research evidence poses a barrier to the development and implementation of health interventions uniquely tailored for this population. Considering that there are over 11 million undocumented immigrants in the United States and given the current sociopolitical climate that increases fear, gathering data that elucidates these lived experiences and assesses health status is paramount.

Footnotes

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) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This publication was supported by the University of Wisconsin, Milwaukee’s Center for Global Health Equity.

ORCID iD

Oluwatoyin Olukotun

References

Achkar

J. M.

Macklin

(2009). Ethical considerations about reporting research results with potential for further stigmatization of undocumented immigrants. Clinical Infectious Diseases, 48, 1250–1253.

Achkar

J. M.

Sherpa

Cohen

H. W.

Holzman

R. S.

(2008). Differences in clinical presentation among persons with pulmonary tuberculosis: A comparison of documented and undocumented foreign-born versus US-born persons. Clinical Infectious Diseases, 47, 1277–1283.

Anderson

(2017). African immigrant population in US steadily climbs. Pew Research Center, 15.

Anderson

López

(2018). Key facts about black immigrants in the US. Pew Research Center, 1, 1–5.

Arnold

C. L.

(2007). Racial profiling in immigration enforcement: State and local agreements to enforce federal immigration law. Arizona Law Review, 49, 113.

Callaghan

Washburn

D. J.

Nimmons

Duchicela

Gurram

Burdine

(2019). Immigrant health access in Texas: Policy, rhetoric, and fear in the Trump era. BMC Health Services Research, 19, 342.

Castro-Echeverry

Kao

L. S.

Robinson

E. K.

Silberfein

E. J.

T. C.

Wray

C. J.

(2013). Relationship between documentation status and survival for medically underserved Hispanic breast cancer patients. Journal of Surgical Research, 180, 284–289.

Cohen

(2017). Hate crimes rise for second straight year: Anti-Muslim violence soars amid President Trump’s xenophobic rhetoric. Southern Poverty Law Center. https://www.splcenter.org/news/2017/11/13/hate-crimes-rise-second-straight-year-anti-muslim-violence-soars-amid-president-trumps

Commodore-Mensah

Himmelfarb

C. D.

Agyemang

Sumner

A. E.

(2015). Cardiometabolic health in African immigrants to the United States: A call to re-examine research on African-descent populations. Ethnicity & Disease, 25, 373.

10.

Commodore-Mensah

Matthie

Wells

Dunbar

S. B.

Himmelfarb

C. D.

Cooper

L. A.

Chandler

R. D.

(2018). African Americans, African Immigrants, and Afro-Caribbeans differ in social determinants of hypertension and diabetes: Evidence from the National Health Interview Survey. Journal of Racial and Ethnic Health Disparities, 5, 995–1002.

11.

Dang

B. N.

Giordano

T. P.

Kim

J. H.

(2012). Sociocultural and structural barriers to care among undocumented Latino immigrants with HIV infection. Journal of Immigrant and Minority Health, 14, 124–131.

12.

De Alba

Hubbell

F. A.

McMullin

J. M.

Sweningson

J. M.

Saitz

(2005). Impact of US citizenship status on cancer screening among immigrant women. Journal of General Internal Medicine, 20, 290–296.

13.

De La Rosa

Babino

Rosario

Martinez

N. V.

Aijaz

(2012). Challenges and strategies in recruiting, interviewing, and retaining recent Latino immigrants in substance abuse and HIV epidemiologic studies. The American Journal on Addictions, 21, 11–22.

14.

Del Real

(2019). “They see us like Trash”: How Mexican illegality stigma affects the psychological well-being of undocumented and US-born young adults of Mexican descent. In Frank

(Ed.), Immigration and health (pp. 205–228). Emerald.

15.

Dickert

Grady

(2008). Incentives for research participants. In Emanuel

E. J.

Grady

Crouch

R. A.

Lie

R. K.

Miller

F. G.

Wendler

(Eds.), The Oxford textbook of clinical research ethics (pp. 386–396). Oxford University Press.

16.

Dingoyan

Schulz

Mösko

(2012). The willingness to participate in health research studies of individuals with Turkish migration backgrounds: Barriers and resources. European Psychiatry, 27, S4–S9.

17.

Fête

Aho

Benoit

Cloos

Ridde

(2019). Barriers and recruitment strategies for precarious status migrants in Montreal, Canada. BMC Medical Research Methodology, 19, 1–14.

18.

Gabriel

Kaczorowski

Berry

(2017). Recruitment of refugees for health research: A qualitative study to add refugees’ perspectives. International Journal of Environmental Research and Public Health, 14, 125.

19.

Hacker

Anies

Folb

B. L.

Zallman

(2015). Barriers to health care for undocumented immigrants: A literature review. Risk Management and Healthcare Policy, 8, 175.

20.

Hass

G. A.

Dutton

M. A.

Orloff

L. E.

(2000). Lifetime prevalence of violence against Latina immigrants: Legal and policy implications. International Review of Victimology, 7, 93–113. http://doi.org/10.1177/026975800000700306

21.

Hernández

M. G.

Nguyen

Casanova

Suárez-Orozco

Saetermoe

C. L.

(2013). Doing no harm and getting it right: Guidelines for ethical research with immigrant communities. New Directions for Child and Adolescent Development, 2013, 43–60. http://doi.org/10.1002/cad.20042

22.

James

Platzer

(1999). Ethical considerations in qualitative research with vulnerable groups: Exploring lesbians’ and gay men’s experiences of health care—A personal perspective. Nursing Ethics, 6, 73–81.

23.

Jaret

(1999). Troubled by newcomers: Anti-immigrant attitudes and action during two eras of mass immigration to the United States. Journal of American Ethnic History, 18, 9–39.

24.

Johnson

K. R.

(1996). Aliens and the US immigration laws: The social and legal construction of nonpersons. University of Miami Inter-American Law Review, 28, 263.

25.

Johnson

K. R.

(2000). Race matters: Immigration law and policy scholarship, law in the ivory tower, and the legal indifference of the race critique. University of Illinois Law Review, 525, 525–557.

26.

Johnson

K. R.

(2009). The intersection of race and class in US immigration law and enforcement. Law and Contemporary Problems, 72, 1–35.

27.

Khan

K. B.

McDonald

Baumbusch

J. L.

Kirkham

S. R.

Tan

Anderson

J. M.

(2007). Taking up postcolonial feminism in the field: Working through a method. Women’s Studies International Forum, 30, 228–242. http://doi.org/10.1016/j.wsif.2007.03.004

28.

Krieger

(2014). Discrimination and health inequities. International Journal of Health Services, 44, 643–710.

29.

Krogstad

J. M.

Passel

J. S.

(2014). 5 Facts about illegal immigration in the US. Pew Research Center.

30.

Lahman

M. K.

Mendoza

B. M.

Rodriguez

K. L.

Schwartz

J. L.

(2011). Undocumented research participants: Ethics and protection in a time of fear. Hispanic Journal of Behavioral Sciences, 33, 304–322.

31.

Marmot

Allen

J. J.

(2014). Social determinants of health equity. American Journal of Public Health, 104, S517–S519. https://doi.org/10.2105/AJPH.2014.302200

32.

Mohanty

C. T.

(1988). Under Western eyes: Feminist scholarship and colonial discourses. Feminist Review, 30, 61–88. http://doi.org/10.2307/302821

33.

Morgan-Trostle

Zheng

(2016). The state of black immigrants: part I: A statistical portrait of black immigrants in the United States. New York University Law School Immigrants’ Rights Clinic.

34.

Nunez

(2013). War of the words: Aliens, immigrants, citizens, and the language of exclusion. Brigham Young University Law Review, 2013, 1517–1562.

35.

O’Connor

M. Y.

Thoreson

C. K.

Ricks

Courville

A. B.

Thomas

Yao

Katzmarzyk

P. T.

Sumner

A. E.

(2014). Worse cardiometabolic health in African immigrant men than African American men: Reconsideration of the healthy immigrant effect. Metabolic Syndrome and Related Disorders, 12, 347–353.

36.

Olukotun

Kako

Dressel

Mkandawire-Valhmu

(2019). A qualitative exploration of the experiences of undocumented African immigrant women in the health care delivery system. Nursing Outlook. Advance Online Publication. https://doi.org/10.1016/j.outlook.2019.08.002.

37.

Poon

K. K.

Dang

B. N.

Davila

J. A.

Hartman

Giordano

T. P.

(2013). Treatment outcomes in undocumented Hispanic immigrants with HIV infection. PLOS One, 8, e60022.

38.

Radford

(2019). Key findings about US immigrants. Pew Research Center, 3, 1.

39.

Read

J. N. G.

Emerson

M. O.

(2005). Racial context, black immigration and the US black/white health disparity. Social Forces, 84, 181–199.

40.

Reed

M. M.

Westfall

J. M.

Bublitz

Battaglia

Fickenscher

(2005). Birth outcomes in Colorado’s undocumented immigrant population. BMC Public Health, 5, 100.

41.

Ruppenthal

Tuck

Gagnon

A. J.

(2005). Enhancing research with migrant women through focus groups. Western Journal of Nursing Research, 27, 735–754.

42.

Shedlin

M. G.

Decena

C. U.

Mangadu

Martinez

(2011). Research participant recruitment in Hispanic communities: Lessons learned. Journal of Immigrant and Minority Health, 13, 352–360.

43.

Sondel

Baggett

H. C.

Dunn

A. H.

(2018). “For millions of people, this is real trauma”: A pedagogy of political trauma in the wake of the 2016 US Presidential election. Teaching and Teacher Education, 70, 175–185.

44.

Sutherland

M. A.

Collins Fantasia

(2012). Successful research recruitment strategies in a study focused on abused rural women at risk for sexually transmitted infections. Journal of Midwifery & Women’s Health, 57, 381–385.

45.

Takaki

(1989). Strangers from a different shore. Little, Brown.

46.

Ukegbu

U. J.

Castillo

D. C.

Knight

M. G.

Ricks

Miller

B. V.

Onumah

B. M.

Sumner

A. E.

(2011). Metabolic syndrome does not detect metabolic risk in African men living in the US. Diabetes Care, 34, 2297–2299.

47.

Wray-Lake

Wells

Alvis

Delgado

Syvertsen

A. K.

Metzger

(2018). Being a Latinx adolescent under a Trump presidency: Analysis of Latinx youth’s reactions to immigration politics. Children and Youth Services Review, 87, 192–204.

48.

Yakushko

(2009). Xenophobia: Understanding the roots and consequences of negative attitudes toward immigrants. The Counseling Psychologist, 37, 36–66.

49.

Young

M. D.

Madrigal

D. S.

(2017). Documenting legal status: A systematic review of measurement of undocumented status in health research. Public Health Reviews, 38, 26.

Lessons Learned From the Recruitment of Undocumented African Immigrant Women for a Qualitative Study

Abstract

Keywords

Introduction

Background

Black African Immigrants and Health Research

The Political Conceptualization of Undocumentedness as a Marginalized Identity

Sociopolitical Context Preceding and During Study

Study Characteristics

Authors’ Positioning

First author

Second author

Methods and Sample

Methodological Experiences

Community-based and respondent-driven recruitment: Strengths and limitations

Ethical protection nuances before, during, and after the study

Implication of sociopolitical context on the data collection process

Lessons Learned

Conclusion

Footnotes

Declaration of Conflicting Interests

Funding

ORCID iD

References