Overcoming barriers to the recruitment of immigrant Hispanic people in perinatal research

1. INTRODUCTION

The Hispanic population in the United States underwent rapid growth in the last few decades, reaching nearly 61 million in 2019. ¹ Hispanic people now represent the second largest racial and/or ethnic group in the United States, ² and thus Hispanic health outcomes contribute critically to the overall health of the United States. Given this, inclusion of Hispanic people in medical and public health research should be a priority. Unfortunately, Hispanic people, and especially immigrant Hispanic people, remain underrepresented in medical research. ³ , ⁴

There are many barriers that prevent minoritized individuals from participating in research, including mistrust of researchers and the research process. ³ , ⁵ , ⁶ Among Hispanic communities, language barriers are also frequently cited. ³ , ⁶ Immigrant Hispanic birthing people, in particular, fear losing health care benefits by participating in research ⁷ and worry about cultural differences between themselves and researchers. ⁵ Some fear that participating in research may increase the risk of adverse immigration sequelae such as deportation. ³

Low Hispanic representation in perinatal and infant health research is an especially striking disparity. ⁸ , ⁹ For example, from 2001 to 2015, only 4 of 23 NIH‐funded studies about postpartum depression explored Hispanic birthing people, ⁵ despite high fertility rates ¹⁰ and known high rates of postpartum depression in this group. ¹¹ Similarly, Hispanic birthing people accounted for less than 1% of all the births included in a systematic review of epigenomic studies of preterm birth. ⁹

Although many barriers prevent Hispanic people from being recruited and participating in research, some groups have documented facilitators to their inclusion, such as having Spanish‐speaking research staff, ³ , ⁵ , ⁶ as well as employing research staff that culturally relate to the participants. ³ Addressing ongoing Hispanic disparities in perinatal research representation is achievable. However, it requires foresight and planning that may be optimized by grounding study approaches in social justice‐oriented conceptual frameworks.

In this commentary, we summarize the principles of community‐engaged research (CEnR) ¹² and argue that this approach offers critical considerations to mitigate research representation disparities among Hispanic people, especially Hispanic immigrants. We further highlight the ways in which the reproductive justice movement and the principles of birth equity that arose from this movement ¹³ can be combined with CEnR practices to promote equitable representation of Hispanic immigrant participants in perinatal research. We propose a framework that uniquely combines these principles into concrete considerations for teams at each stage of the research process (Table 1). Given the sparse literature base, we use a recent project by our team as a case study for how these considerations may be implemented.

TABLE 1.

Concrete considerations to maximize inclusion of immigrant individuals in health research

Research team

Recruit for a multilingual, multiethnic research team

Consider recruiting research team members from within the community (local community‐based organizations, community health workers, local patient advocates, former patients, etc.)

Confirm bilingual fluency of team members via formal language testing

Create paid consultant agreement positions for community research team members

Study design

Vet survey or qualitative questions with pilot sample or community research members

Develop a results dissemination plan that involves both the organizations that helped recruit and participants themselves

Consider acquiring a Certificate of Confidentiality to add an extra level of protection to data that include immigration or documentation status

Recruitment

Consider recruitment sites as critical study stakeholders

Meet and establish regular communication with staff at recruitment sites to build relationships with trusted providers

Establish clear lines of communication with participants who rely on familiar technology, such as internet‐based messaging applications

Depending on the study, encourage word‐of‐mouth recruitment given how immigrant community members communicate about who to trust

Data collection

Consider which variables are necessary and whether proxy measures for sensitive data points, such as documentation status, may suffice

Explain the purpose of collecting identifying information to participants at each stage of the study

Consider reminding participants that the confidentiality of research data is protected by law after the consent process

Allow for flexibility with respect to data collection platforms and times to allow for social factors that might otherwise preempt participation (internet access, work, travel restrictions, etc.)

Explore ways to address the power imbalances that naturally exist between researchers and participants, as well as between US and foreign‐born individuals

Dissemination and post‐study engagement

Create lay summaries of findings using alternative methods of communication such as infographics, blog posts, videos, social media posts, or town halls

Consider providing participants directly with findings of the study they participated in

Empower participants to continue communicating with research staff via email, text, or phone calls should questions or challenges arise after data collection is complete

Furthermore, we will transition from using the term “Hispanic” to using the term “Latine.” We acknowledge ongoing dialogues around preferred terminology for this group. ¹⁴ However, recently, the term Latine arose in Spanish‐speaking countries as a term inclusive of all gender identities that can be easily pronounced in Spanish in a way that Latinx, for instance, cannot. ¹⁵ For these reasons, we have chosen to use the term Latine.

2. GROUNDING PRINCIPLES

CEnR was defined by the Centers for Disease Control in 1997 as a way to improve population health by building and bolstering relationships between researchers and the communities they are researching. ¹² Community‐based participatory research (CBPR) exists on the continuum of CEnR, when community partners are active leaders of the research process, and requires meeting rigorous standards. ¹² Many research groups have designed their studies along the CEnR spectrum when specifically studying immigrant communities, ¹⁶ , ¹⁷ including the Latine immigrant community. ¹⁸ However, we argue that CEnR principles can be considered more broadly for the purpose of improving Latine and/or immigrant representation in research overall.

To further improve research representation in perinatal research, the tenets of CEnR can be combined with tenets from the reproductive justice movement. Reproductive justice refers to the rights of birthing people to have or not have a child and their rights to be able to parent their children in safe and healthy environments. ¹⁹ This movement was founded by African‐American women in 1994 to amplify maternal racial health inequities. ²⁰ The concept of birth equity emerged from the reproductive justice movement and is defined as “the assurance of the conditions of optimal births for all people with a willingness to address racial and social inequities in a sustained effort.” ¹³ Reproductive justice and birth equity principles center the voices of Black birthing people due to the long‐standing and persistent inequities in Black maternal and infant health outcomes in the United States. ²¹ However, they can and should be considered when designing research studies that aim to involve other birthing people marginalized in the United States, including immigrants who may face intersectional oppression related to structural xenophobia, racism, and/or colorism. ²²

3. APPLYING THE FRAMEWORK: A CASE EXAMPLE

We contend that many of the social justice tenets proposed by CEnR, reproductive justice, and birth equity can be combined to approach each step of the research process in a way that will optimize equitable recruitment and treatment of pregnant immigrant research participants. In the following sections, we will discuss five distinct stages of the research process: (1) building the study team; (2) study design; (3) recruitment; (4) data collection; and (5) the post‐study phase. In each section, we will first outline relevant principles from CEnR, reproductive justice, and birth equity that can be applied at each stage to equitably recruit and maintain immigrant participants in perinatal research. We will then use “The Promoting Resilience in Immigrant Mamas” (PRIMA) study as a case example to illustrate how to apply the recommendations in our framework at each stage (Table 1). PRIMA was a qualitative study aimed at generating programmatic and policy interventions to mitigate the ongoing fear and confusion caused by recent punitive immigration policies ²³ that may be impacting pregnant Hispanic immigrants' access to, use of, and comfort with prenatal care. ²⁴

3.1. Building the study team

A fundamental aspect of CEnR is the critical need to consider all the stakeholders who may represent the community that a study hopes to impact during the construction of the research team ²⁵ (Table 1). Involving community stakeholders to a research study increases sustainability, ²⁵ but the likelihood of this increases if teams choose stakeholders with the infrastructure necessary to implement findings or if the study includes plans to build such infrastructure. Partnership with community‐based organizations (CBOs) and other social organizations has been a consistent aspect of previous studies among immigrant communities. ²⁶ Adding the birth equity perspective of amplifying birthing individuals' voices to these CEnR principles, the PRIMA research team included both research and lived expertise about pregnancy, infancy, Latine culture, and immigration. This meant considering experts across the maternal–infant spectrum, research partners who represented local CBOs and individuals who identified as Latine, mothers, or both. All lent different yet valuable perspectives.

For research among immigrant communities, teams must also consider including members who are proficient in the target languages or have been trained to work with interpreters. ²⁷ Fluency should be confirmed through formal language testing for all multilingual team members who interact with participants who prefer a language other than English, as language proficiency is often overestimated by health professionals. ²⁸

3.2. Study design considerations

The CEnR framework encourages research teams to amplify voices traditionally silenced or marginalized and aims and concretely incorporate these voices during study design. ²⁹ The PRIMA study approached this principle by eliciting full‐team input for all study procedures and participant‐facing study materials. For instance, it was considered critical by the group that the name of the study itself incorporates the Spanish language, hence the name PRIMA, which means “cousin” in Spanish. In addition, conducting research with birth equity in mind required us to consider the structural reasons for why birthing participants might be fearful or hesitant to share their experiences, namely ongoing punitive immigration policies and xenophobic political rhetoric. ¹⁹ As such, our team collaboratively developed a trauma‐informed interview guide that critically examined the structure and wording of questions.

We also acquired a Certificate of Confidentiality as others have done. ²⁶ Such certificates are automatically issued for government‐funded research, ³⁰ but can be sought by all research groups collecting immigration information in order to mitigate privacy concerns among individuals with varying documentation statuses. Finally, a plan for disseminating findings to all stakeholders, including the participants themselves, should be considered at this early stage, as this may require additional institutional review board allowances to contact participants after the study is completed.

3.3. Recruitment

Research teams should consider recruitment sites as institutional stakeholders in their study and seek to form relationships with site staff (Table 1). Although CBPR studies may recruit and collect data within the community itself, ¹² many have argued for broader stakeholder definitions in CEnR that include hospitals and health systems as key players that should be engaged in the academic research process for ultimate public health impact. ²⁹ , ³¹

To build relationships with clinical stakeholders for recruitment purposes, the PRIMA study completed in‐person meetings with each clinical site before recruitment and endeavored to meet all clinic personnel that participants might encounter. These meetings provided an opportunity to co‐create a plan with staff to minimize clinical workflow interruptions, as well as ensuring that all clinic staff understood the study's purpose, could voice opinions and/or concerns, and knew the plan for dissemination of results after study completion. This relationship‐building with the health care teams at our recruitment sites proved invaluable because the medical providers who had met us felt comfortable assuaging patient fears about talking to our research team. Furthermore, we decided in concert with clinical providers that foreign‐born status would be verbally assessed by bilingual study personnel only, as we did not want participants to feel that their medical provider was asking about their immigration status.

Research teams seeking to engage immigrant participants must also be cognizant about preferred forms of communication among immigrant communities. For instance, internet‐based text message applications are known to be an important tool for communicating with refugee and immigrant communities. ³² In addition, word‐of‐mouth recruitment has been used by other groups successfully recruiting immigrants to their studies. ³³ To facilitate enrollment of PRIMA participants, we ensured a bilingual research coordinator was reachable by phone, via text message, or via WhatsApp, an internet‐based messaging application. Participants who referred to our team frequently stated they were reaching out specifically because they trusted the person who had told them about the study, and it was easy to get in touch with study personnel.

3.4. Data collection

Aligning research and community needs and goals is a critical tenet of CEnR, ²⁵ while centering the voices of marginalized birthing people is critical to birth equity. ³⁴ Teams recruiting immigrant participants, especially those made vulnerable by pregnancy, must be particularly cognizant of data that may be considered particularly sensitive for this population, such as place of birth, documentation status, or pregnancy loss. However, rather than shy away from collecting such data, the tenets of CEnR and birth equity can be combined to actively engage participants in the data collection process, while simultaneously aiming to mitigate the power imbalances that naturally exist between researchers and participants (Table 1).

We aimed to increase PRIMA participants' agency during the data collection process by granting them flexibility with respect to interview platforms as well as the narratives they wished to share. Participants were offered three platforms for the interviews: in‐person, via telephone or via an online virtual portal. All participants chose to be interviewed by telephone, citing increased comfort with this modality. Although the use of telephones for qualitative interviews was traditionally considered inferior compared with face‐to‐face interviews, especially prior to the COVID‐19 pandemic, our experiences mirrored those of other research teams that have successfully collected sensitive or stigmatized narrative data from marginalized women. ³⁵

During their interviews, our participants provided rich data about their pregnancy experiences, including personal details about their fears and trauma. Many also shared information about their documentation status without prompting. Two strategies may have contributed to this. First, while moving through the interview, topic flexibility was encouraged and participants were frequently reminded that they were co‐creators in the knowledge process, a salient aspect of CEnR. ³⁶ Secondly, interviews were conducted by bilingual study team members who were ethnically concordant with research participants, in an attempt to minimize power differentials between researcher and participant. ³⁷

3.5. Post‐study engagement

The CEnR framework encourages researchers to maintain flexibility in the process of attaining research goals and to consider community engagement after data collection from the outset. ³⁸ This might include summarizing findings in lay terms through the use of infographics, town halls, or social media in order to ensure all stakeholders are included in the dissemination phase of the research study (Table 1).

In the PRIMA study, participants were asked if and how they wanted to receive a lay summary of the study findings during the initial consent process. In addition, participants were told early on that we would need their address to mail them a study close‐out package, which included a gift card, a bilingual children's book, and information about health and social service eligibility. We learned two lessons at this stage that may assist future researchers engaging with immigrant participants, especially teams who seek post‐study engagement with their immigrant participants. First, many participants told us that residential addresses frequently changed for them and that they did not always provide correct addresses in health care settings due to immigration‐related fears. Thus, we modified our research process to include re‐confirming residential addresses after the interview, and participants were reminded why we needed the information.

Secondly, our team's experience highlights the challenges that may arise when using gift cards among immigrant participants and the ongoing need to allow for institutional flexibility with regard to research compensation. Many PRIMA participants experienced challenges using the gift card we provided. Per our institution's standards, we used ClinCards, a participant research card that functions as a debit card. Even though ClinCards come with detailed instructions in both English and Spanish, along with a toll‐free phone number for questions, our participants still expressed confusion with how to use them. Some participants also expressed discomfort with the idea of calling an unknown number on an “official document.” When following up with participants who had not activated their cards, we learned that these participants had encountered challenges but had been afraid to call us. Our experiences mirror other groups' experiences of challenges using reimbursement cards for research studies involving immigrant participants. ³⁹ Given our participants' challenges, we created a simpler tip sheet for participants and began following up with participants who had not used their cards to further assist them if needed. All participants were ultimately able to use their cards, but institutional flexibility to provide participants with cash rather than gift cards would have simplified this process and could be advocated for.

4. CONCLUSIONS

Minoritized individuals and communities continue to be underrepresented in health sciences research, including in perinatal studies. In this paper, we highlighted how the principles of CEnR, ¹² reproductive justice, ²⁰ and birth equity ¹³ can be combined into a consolidated framework to equitably recruit and engage immigrant participants in research, especially Latine immigrant birthing people with limited English proficiency and/or varying documentation statuses (Table 1). Although strategies must always be tailored to local contexts, our framework can serve as a starting point for how research teams aiming to recruit immigrant participants might transform such principles into concrete strategies at each stage of the research process. Improving the diversity of research participants in health services research not only increases the impact and generalizability of the work but importantly can help address the ways in which underrepresentation of minoritized individuals in research continues to compound health disparities. ⁴⁰

Laguna‐Torres A, Velosa L, Barreto A, Lorch SA, Virudachalam S, Montoya‐Williams D. Overcoming barriers to the recruitment of immigrant Hispanic people in perinatal research. Health Serv Res. 2023;58(3):543‐548. doi: 10.1111/1475-6773.14127