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Engaging, recruiting, and retaining pregnant people from marginalized communities in environmental health cohort studies: a scoping review
BMC Public Health volume 25, Article number: 908 (2025)
Abstract
Objectives
To identify barriers to and strategies for improving the representation of pregnant people from marginalized communities in pregnancy cohort studies that measure environmental chemicals.
Methods
Guided by the Arksey O’Malley and Levac Frameworks, we conducted a scoping review of peer-reviewed literature published between 2000 and 2022. Included studies discussed barriers and/or strategies related to engaging, recruiting, and retaining pregnant participants or participants of reproductive age from marginalized communities into environmental health research.
Results
Twenty-nine peer-reviewed articles were included in the review. Overall, 31% (9/29) of the studies reported on engagement, recruitment, and retention of participants from racialized communities, 10% (3/29) reported on involvement of participants identifying as Indigenous, and 10% (3/29) of studies reported on participants living in households or areas of low socioeconomic status. We identified four key barriers: participant burden, social inequities, lack of trust, and lack of cultural relevance. We reported identified strategies to mitigate these barriers.
Conclusion
Although there is limited coverage in the literature on strategies to effectively engage people from marginalized communities in environmental health pregnancy cohort studies, our findings suggest that applying a health equity and social justice lens to research may help address barriers that exist at the individual, interpersonal, community, institutional, and policy levels. Findings from this review may have important implications for planning future pregnancy cohort studies and ensuring that communities who are disproportionately affected by environmental chemical exposures may be better represented in research and considered in policy decisions.
Background
Environmental chemical exposures have important implications for health throughout the life course [1,2,3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19]. These chemicals include a wide range of substances that are naturally occurring (e.g., mercury, arsenic) as well as those produced in industrial settings and used in household and consumer products and in agriculture (e.g., phthalates, phenols, perfluoroalkyl substances (PFAS), pesticides). Many of these chemicals have demonstrated toxicity. For example, exposure to lead and mercury are associated with detrimental effects on children’s brain function that may persist throughout their life [20]. Exposure to PFAS may increase risk of pregnancy complications such as preeclampsia putting both the mother and child at risk of life-long health effects [21].
Although there are well-established associations between early life environmental chemical exposures and adverse effects on child health, not all populations experience equal burdens of exposure. In particular, people living in marginalizing circumstances, including those living on low income, Indigenous peoples, and racialized communities, are often disproportionately exposed to environmental chemicals [22, 23]. This disproportionate exposure may be driven by multiple potentially overlapping factors including residential proximity to chemical ‘hotspots’ (e.g., landfills, industry, high traffic zones), residence in older housing, or use of culturally relevant products containing high levels of chemicals (e.g., hair straighteners) [24]. Additionally, people living in marginalizing circumstances may be more susceptible to the adverse effects of environmental chemicals due to risk factors such as low nutritional status or higher levels of stress. For example, having limited access to healthcare and restricted financial resources may exacerbate underlying health conditions and the health effects of chronic stress [25]. While pregnancy cohort studies provide promising avenues to understand the relationships between environmental exposures and health outcomes [26], problematically, marginalized communities are often underrepresented in these studies [22].
Strategies typically used to recruit and retain pregnant participants in pregnancy cohorts may fail to account for the circumstances of marginalized populations [27,28,29,30,31]. Recruitment strategies are often tailored towards participants who have the resources to attend study visits during working hours and have access to transportation and child care [32]. Participants in existing cohorts and biomonitoring studies in middle to high income countries, for example, tend to be of moderate to high socioeconomic status and primarily represent non-racialized populations [33,34,35,36,37,38,39]. Consequently, these studies are not able to fully assess levels of exposures in marginalized communities or understand the factors that exacerbate exposure and susceptibility. Furthermore, human biomonitoring data, the cornerstone of exposure assessment in environmental epidemiology, require the collection and storage of human biological specimens for analysis of chemicals. This aspect of research may pose a particular barrier to recruitment as it is often invasive and requires a certain level of trust with the research team and process [31].
Strategies to improve representation of marginalized communities in pregnancy cohort studies are necessary. We conducted a scoping review to assess engagement, recruitment and retention strategies. In doing so, we contextualized the learnings from included studies by mapping our observations onto the socioecological model of health [40, 41]. This model is an effective tool for unpacking the multiple facets of marginalization and contextualizing how barriers to research participation can exist at individual, institutional, community, and policy levels [42,43,44].
Previous reviews have focused on the recruitment of pregnant people into clinical trials [45, 46] and pregnancy cohort studies [31]; however, no identified reviews have explored the issues specific to engaging, recruiting, and retaining marginalized communities in pregnancy cohort studies that collect biomonitoring data. In light of this gap, we conducted this review to inform recruitment strategies for forthcoming Canadian longitudinal biomonitoring research. Our primary objective was to identify barriers to and strategies for improving the representation of prospective parents and pregnant people from marginalized communities into pregnancy cohort studies that investigate associations between environmental chemicals and health outcomes. Our secondary objective was to map these barriers and strategies onto the socioecological model of health.
Methods
We used the Arskey O’Malley framework and Levac’s further enhanced framework to conduct this review [47, 48]. These frameworks provide a robust approach for conducting scoping reviews and promote engagement with collaborators and stakeholders to elicit feedback related to the study protocol and interpretation of final study results. We report methodology and results according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extensions for Scoping Reviews (PRISMA-ScR) (Suppl Table 1) [49].
Search parameters
Relevant health research databases, namely, OVID Medline, OVID EMBASE, OVID APA, PsycINFO, Scopus, and EBSCO (CINAHL) were searched to identify peer-reviewed publications between January 1, 2000 – February 14, 2022. A library liaison was consulted on the search protocol and steps. The search was conducted first by identifying Medical Subject Headings (MeSH) terms followed by keywords (Table 1). The search was structured to identify literature in the following concepts: 1) marginalized, 2) engagement, recruitment, and retention, 3) environmental chemicals, and 4) cohort studies. Consistent with previous literature [42], we used the terms engagement and recruitment to refer to strategies for connecting with and enrolling participants into pregnancy cohort studies, and retention to refer to strategies for keeping participants engaged and motivated until the completion of the study.
Study selection
After conducting the search and eliminating duplicates using Covidence review management software [50], one reviewer screened all identified articles by title and abstract, followed by a review of the full text and initial extraction of relevant data. A second reviewer also screened the included articles to ensure they met our inclusion criteria. This reviewer also conducted a thorough analysis and quality control check of all tables and text.
Included publications were cohort studies that recruited people who were pregnant or of reproductive age, and provided information relevant to recruitment, engagement, or retention in marginalized populations. We focused on higher-income regions (e.g., North America, Europe, New Zealand, Japan, and Australia) as these were considered most relevant to our objective to inform potential future Canadian biomonitoring studies. We operated under the assumption that these study settings would have findings broadly generalizable to the capacity, resources, and funding in the Canadian setting. All included publications were peer-reviewed and written in English. As a final step, reference lists of publications selected for inclusion were scanned for any additional eligible studies (Fig. 1).
Data extraction and analysis
The following data were extracted: author last name and date of online publication, study setting, name of cohort, sample size, attrition, number of participants retained at follow-up, and participant characteristics including age at time of recruitment, race, ethnicity, immigrant status, and socioeconomic status or income. We also retrieved information on recruitment setting, recruitment duration, and barriers and strategies to engagement, recruitment, and retention. One reviewer extracted data into a Microsoft Excel file prior to data synthesis. A thematic analysis was conducted using inductive and deductive approaches to identify themes corresponding to barriers that impede engagement, recruitment, and retention and strategies that promote successful engagement, recruitment, and retention of individuals from marginalized communities [51]. Themes were then mapped onto an adapted version of the socioecological model of health (Fig. 2).
Mapping barriers to research participation among marginalized population. Adapted from: Socio-ecological model: framework for prevention, Centers for Disease Control. Available from: https://www.cdc.gov/violenceprevention/about/social-ecologicalmodel.html
Consultation with stakeholders
Consistent with a scoping review approach that includes knowledge users [52, 53], we conducted two online consultation exercises with existing research collaborators and stakeholders from the Prenatal Environmental Health Education (PEHE) Collaboration and lead Health Canada scientists from the Maternal-Infant Research on Environmental Chemicals (MIREC) study. The purpose of this consultative process was to 1) review the search protocol and provide an overview of preliminary findings and 2) share the results of this review and discuss whether the results align with research and practice. We shared meeting notes with the PEHE-MIREC stakeholders and integrated their feedback into our global interpretation of the scoping review. A description of this knowledge users consultation and link to the full report is available on the PEHE website [54].
Results
Descriptive summary
The literature search yielded 2,866 articles, which were further screened by title and abstract according to the eligibility criteria, leaving 95 articles for full-text screening (Fig. 1). Of these, 21 articles met the study eligibility criteria. Reference lists were then scanned, yielding an additional eight articles. Altogether 29 articles were included for analysis. The majority of the studies were from the United States (8/29; 27%) and Canada (6/29; 21%), with the remainder from European countries (France, Germany, Belgium, Norway, Italy and Spain), New Zealand, Australia, and Japan. Thirty one percent (9/29) of the studies reported on engagement, recruitment, and retention of participants from racialized or marginalized communities, 10% (3/29) reported on involvement of participants identifying as Indigenous, and 10% (3/29) of studies reported on participants living in households or areas of low socioeconomic status. The most common recruitment setting was a medical clinic (62%, 18/29), followed by community settings (17%, 5/29), and a combination of clinic and community settings (14%, 4/29); online recruitment was the least common approach (10%, 3/29) (Table 2).
Barriers to engagement, recruitment, and retention in pregnancy cohort studies
The primary barriers to engagement, recruitment, and retention are participant burden, socioeconomic inequalities, lack of trust in science and research and lack of cultural relevance (Table 3). To demonstrate the influence of individual, interpersonal, community, institutional, and policy factors and influences, we mapped barriers to the socioecological model (Fig. 2). To support the practical application of our findings, we also mapped identified barriers onto a timeline depicting a typical sequence of participant engagement, recruitment, and retention activities in a cohort study design (Fig. 3).
Participant burden
Time required to participate in study visits was a recurrent theme in the reviewed literature and highlighted by nine studies [37, 55, 57, 60, 61, 64, 70, 74, 76]. In addition to needing to seek time off from work or care-giving responsibilities, participants may be asked to travel for interviews and incur transportation costs. These demands combined with stressors related to caregiver burden (e.g., child care and elder care), job constraints, and living in socioeconomically deprived neighborhoods may also deter participation [56, 59]. Retention may be similarly affected by high participant burden.
Socioeconomic inequities
As noted in six studies, marginalized populations experience greater challenges in regularly seeking and accessing health care due to language and literacy abilities [56, 59,60,61, 67, 70], level of education attainment, living in socio-economically deprived households, or experiences of stigma and exclusion associated with racism [56, 58, 59, 80]. These challenges in health care access transcend to study participation. Antenatal clinics are the most common settings for pregnancy cohort study recruitment and engagement; however, individuals who do not have antenatal care, due to socioeconomic status related barriers, will be excluded from recruitment efforts and, as a result, not invited to participate in the study [57, 76, 81]. Individuals with language barriers, lack of digital literacy, or limited internet access are also less likely to be recruited into studies that use online tools for engagement and recruitment [38, 68, 73, 82]. Although online methods can facilitate recruitment from a wider geographic range than in-person recruitment methods, the resulting study population may comprise primarily educated participants of higher socioeconomic status [82].
Lack of trust in science and research
Negative experiences with health care services or research, misinterpreted stories, or historical disenfranchisement may all contribute to a lack of trust in science and research. These negative experiences and resulting lack of trust may be exacerbated in individuals and populations who have been subject to disproportionate exposure, injustice or discrimination [22, 25, 83]. Hertz-Picciotto et al. reported that people of low socioeconomic status and those who experience disproportionately high exposure to environmental chemicals may be less likely to trust science and the research process [55]. Authors of three studies noted that individuals from marginalized communities may also be hesitant to share personal or biospecimen data with governmental agencies, or any form of authority [67, 74, 81]. This hesitancy may be rooted in concerns regarding confidentiality, data sharing, and privacy [55].
Lack of cultural relevance
Recruitment strategies in pregnancy cohort studies that ignore cultural beliefs and norms impede participation of racial or marginalized communities. Questionnaires requesting personal details about the family and home environment may appear invasive or even offensive [31]. Additionally, participants may be hesitant, for cultural or religious reasons, to provide biospecimen samples. For example, Morrens et al. report that some Muslim women may view biospecimen samples, such as the placenta or cord blood, as sacred [81]. In contrast to the Western biomedical view of biospecimen samples as either medical waste or a donation to research, individuals who follow certain cultural or religious traditions may assign cultural meanings and representations to biological samples [61]. Barriers related to the lack of cultural relevance were more commonly reported in the initial stages of recruitment when individuals are first presented with research topics and requirements for participation than later stages of the research [59, 67, 75].
Strategies to facilitate engagement, recruitment, and retention into pregnancy cohort studies
From the reviewed literature, we identified the following primary strategies to facilitate engagement, recruitment, and retention: minimize participant burden, address social inequities, build trust in science and research, and consider cultural relevance (Table 3). As with the barriers, these strategies were mapped onto the socioecological model of health (Fig. 2) and the study design timeline (Fig. 3).
Minimize participant burden
Three studies reported strategies to reduce participant burden including shortening interview questionnaires, reducing time commitment, conducting home visits, and providing flexibility in scheduling and cancelling interviews [55, 59, 61].
Address social inequities
To mitigate equity-related barriers (e.g., literacy and language), researchers have engaged with the local community and developed study design and communication materials tailored to the local community context. Eight studies reported that multiple strategies are needed to ensure that potential studies are planned at the outset to be inclusive, adaptable, equitable, culturally relevant, and responsive as well as designed to meet the needs, capacity, and interests of participants [55, 56, 59, 64, 74, 75, 80, 81]. Other specific strategies to address social inequities are outlined below.
Early and ongoing consultation and engagement with local community members and leaders, service providers, and community organizations have been highlighted as an important strategy by eight research teams [57, 60,61,62, 69, 70, 81, 84]. Authors of the Alberta Pregnancy Outcomes and Nutrition (APrON) study reported that collaboration with relevant organizations and professionals (centres for pregnant teens, programs to support low-income pregnant people, community perinatal programs, and the provincial after hours medical help line) enhanced recruitment strategies, particularly for hard-to-reach individuals [69]. Community engagement and consultation can inform study procedures by asking critical questions (“how do socially marginalized pregnant people experience environmental health risks”), understanding barriers to participating in human biomonitoring research (“which study procedures may cause barriers for socially marginalized people”), and identifying opportunities to increase participation (“how can we motivate pregnant people to participate?”) [81]. Forming strong partnerships between clinical and community-based care providers who work with underserved and disadvantaged communities may also be an effective strategy for engagement, recruitment, and retention within those populations [57, 61, 62]. Engagement and recruitment by motivated health care providers (e.g., gynecologist, nurse), in collaboration with researchers, increase the likelihood of pregnancy cohort participation particularly if the relationships between care providers and participants are well-established and based on trust [61, 84].
Recognizing that research projects aiming to include marginalized populations require sustained communication, authors of multiple studies identified both strategies and barriers relevant to effective communication. Fourteen studies reported that sustained communication strategies (i.e., via quarterly or semi-annual newsletters) to express participant appreciation, share study updates and preliminary results, and celebrate babies’ milestones are effective means of maintaining participant retention in longitudinal research [37, 38, 58, 62, 66, 68, 69, 71,72,73, 79, 81, 85, 86]. Despite the ease of online communication, strategies using this medium need to consider potential barriers resulting from lack of internet access, electronic devices, and digital literacy. Internet-based communication, such as sending appointment reminders and providing study updates, may aid with participant retention [73].
Six studies reported that providing compensation and incentives can help maintain participation throughout the duration of longitudinal research recruitment and follow-up [57, 61,62,63, 78, 86]. Examples of compensation and incentives include grocery store gift cards [62, 78, 86], baby T-shirts, and small gifts timed to baby's milestones [87]. Covering the costs incurred by participation (e.g., transportation, parking) is another strategy for minimizing social inequity barriers [78, 79]. Thus, although study compensation and incentives cannot remove social inequities, these strategies may help mitigate some of the barriers imposed by participation.
Building trust in science and research
Building trust between the research team and participants is instrumental to successful recruitment and retention [64, 67, 74] and, as noted by six studies, may be accomplished, in part, by providing information on how data will be collected, handled, stored, and reported [37, 38, 55, 59, 64, 74]. An additional reported strategy to build trust in the research process was a ‘buddy system’[81]. Buddies may be third-party individuals with similar ethnic backgrounds who are hired by the research team and can foster meaningful social connections with the community being engaged and recruited. Morrens et al., used this approach to support women at all stages of the research to provide opportunities to ask questions, discuss the study with family members, and facilitate informed decisions [81]. A ‘bridge person’ is another strategy to address mistrust, particularly in research that involves engaging with racialized and marginalized communities [42, 55, 71, 78, 79]. A ‘bridge person’ may be a same-culture researcher, a (trained) community member or leader, or staff from a community-based organization [44].
Consider cultural relevance
Tailoring study design materials to participants’ language, cultural norms, and beliefs is integral to reducing language and literacy related barriers and enhancing cultural relevance, as noted by five studies [59, 64, 65, 67, 81]. Translating study materials (e.g., eligibility screening forms, informed consent forms, questionnaires, posters, fliers, and patient handouts) [41] and hiring bilingual staff representative of the local culture are demonstrated strategies for enhancing recruitment and engagement [59, 75, 79]. As an example, Postma et al. aimed to address social inequities in a pregnancy cohort study of Hispanic and non-Hispanic participants by operationalizing cultural responsiveness theory. Specifically, they assembled a culturally competent team, established partnerships with community organizations, and created a tailored and personalized marketing and promotion campaign [62].
Hiring bilingual staff representative of local culture is an effective sequelae of community engagement. Involvement of local staff who are representative of the target population, culturally competent, sensitive, and have strong interpersonal skills benefits participant engagement [70, 75]. Specifically, staff may share their expert knowledge of community connections, form meaningful connections among researchers, staff, community partners, and community members at large [79], as well as build trust and foster relationships between the research team and participants [38, 55]. Local staff may also be able to identify and facilitate support networks for participants; this approach has been shown to enhance participation [55, 71, 78].
Discussion
This scoping review identified barriers and strategies to improve engagement, recruitment, and retention of individuals from marginalized communities into pregnancy cohort studies. Participant burden, pre-existing social inequities, lack of trust in research, and lack of cultural relevance were the primary identified barriers. Corresponding strategies to bolster participation are rooted in culturally relevant and responsive community-based consultation and engagement that begin in the planning stages and continue throughout the study. Implementing these strategies requires researchers to identify community members and partners early in the study planning process to allow sufficient time to build partnerships and trust. As summarized in Fig. 3, our review identified practical strategies that can be adopted at different stages of engagement, recruitment, and retention to achieve meaningful participation through all stages of the study. Consistent with our interpretation of the literature, Snow et al., in their review of engaging marginalized populations in health services research, concluded that a ‘one-size-fits-all’ approach is insufficient for engaging with marginalized populations to address barriers to participation [88].
The orientation of our review was informed by an interdisciplinary consultation process with knowledge users [53, 54]. The PEHE-MIREC consultative group voiced strong support for the need to find better ways to ensure inclusion and representation of marginalized communities in future Canadian cohorts and offered guidance to support the framing and analysis of the present review. Notably, the consultative process helped to shape our attentiveness to the contextually-driven and dynamic factors that lead to disproportionate barriers to research participation at individual and community levels, as reflected in our use of the socioecological model to frame our findings. Similarly, the depth of practical experience represented within the consultation group helped attune our thematic observations regarding research recruitment and retention strategies that can build trust, increase cultural relevancy, reduce socio-economic barriers and participant burden, and ensure reciprocity.
Mapping the barriers onto the socioecological model of health (Fig. 2) contextualized how the barriers are shaped by prospective research participants’ individual, interpersonal, institutional, community, and policy environments. As well, this model demonstrates how corresponding successful strategies must undertake a multi-pronged approach. For example, researchers have the capacity, and indeed the responsibility, to build trust (interpersonal), reduce participant burden (interpersonal), tailor recruitment strategies (institutional), engage and consult with the community to identify and address community needs (community), and attend to the potential for research findings to inform health-protective measures (policy). We did not identify any specific studies that addressed barriers at the policy level; however, Beasley et al. recommend prioritizing measurement of the research impact for the community studied rather than the impact of the research for the researcher [41]. Shifting the focus of impact assessment from researcher achievement towards research program sustainability and lasting value to the community may help facilitate policy level changes relevant to funding structures and calls for research that addresses the needs of marginalized communities. If policy impact is the end goal, participants need to be informed about the policy implications of the research and the individual value of their engagement in the research. In other words, researchers need to be prepared to meaningfully provide answers to questions such as “why should I participate” and “how will this benefit me and my child’s health.” [55] These messages were also identified in the stakeholder meetings conducted in parallel with this review.
In addition to desired impacts of research on policy, some policy decisions may impede individual level engagement and participation in research [89]. Moreover, contemporary lack of trust in science and research may have roots in historical policies that contributed to structural racism, trauma, and colonial oppression. Although identifying these potential macro-level sources of distrust was not feasible within our review, we acknowledge the need to consider the historical and contemporary local context when planning future studies. Given our focus on informing future Canadian biomonitoring research, it will be important to consider how barriers related to indigeneity, rurality, and race may deter and constrain participation of community members in environmental health and biomonitoring research [90,91,92].
We hypothesize that interventions designed to address barriers at all levels of the socioecological model are more likely to enhance engagement, recruitment, and retention of individuals than efforts targeted at a subset of levels; however, the existing evidence base does not provide the data to make this comparison. There was no identified study that implemented strategies that corresponded to all or most levels of the socioecological model that could be appropriately compared to – in terms of retention rates – studies that considered a subset of strategies.
We identified multiple knowledge gaps in the reviewed evidence that are important to consider for conceptualization of future pregnancy cohort studies. First, no identified studies discussed barriers to engaging and recruiting participants prior to pregnancy and retaining them throughout pregnancy and into the postpartum period. Measurement of environmental chemicals in the preconception time period is particularly important for understanding potential reproductive and developmental toxicity [93]. Existing preconception studies have primarily identified participants through fertility clinics [66, 86] or via online surveys [94, 95]. Both of these recruitment strategies have limited effectiveness in reaching marginalized communities and the resulting study populations have limited sociodemographic diversity. Second, although a number of reviewed studies included biospecimen collection [63, 67, 76,77,78], no study discussed potential strategies for enhancing willingness to provide biospecimens or the level of trust needed to provide consent for biospecimen collection. Obtaining robust understanding of environmental chemical concentrations in individuals from marginalized communities relies on availability of biological specimens because human biomonitoring data are considered the gold standard for evaluating the human burden of environmental chemicals [96]. Participants may be reluctant to provide specimens if they lack trust in the research team or if they have unmet concerns about how their data or specimens will be used in future research. While these concerns may be reasonably addressed in some cases with efforts to listen and respond to participant concerns, this issue is largely untouched in the literature. Third, few studies focused on engaging men, fathers, or partners in biomonitoring research. Although cohorts in the United States [61] and New Zealand have collected biospecimens from fathers and involve fathers or partners, there is largely a dearth of paternal information in longitudinal pregnancy cohort studies [85]. One of the few preconception studies of couples reported that associations between male partners’ chemical concentrations and diminished fecundity were stronger and more consistent than associations observed in female partners [97]. In addition to the added value of considering paternal exposures in couple-based health outcomes such as fecundity, engaging male partners promotes a holistic approach to reproductive and child health. Fourth, no studies attempted to identify engagement, recruitment, and retention strategies for members of the LGBTQS2 + community. Individuals whose gender identity differs from their biological sex at birth may carry a pregnancy [77]; researchers, therefore, need to consider the unique barriers and identify inclusive strategies to recruit transgender, non-binary, and gender-diverse people. Finally, a majority of the studies reported on barriers and strategies for recruitment, with limited to no information on retention. We speculate that this gap in knowledge stems from the difficulty in assessing perceptions among participants lost to follow-up. A previous review reported similar findings whereby recruitment strategies were more frequently discussed than those aimed at retention [31]. In light of these gaps, future research focused on the feasibility of recruiting and retaining prospective parents of diverse socioeconomic, educational, ethnic, and gendered backgrounds into biomonitoring pregnancy cohort studies and assessing the potential value of outlined strategies is warranted.
This is the first identified scoping review to focus on barriers to and strategies for improving engagement, recruitment, and retention of marginalized communities in pregnancy cohort studies that collect biological samples to measure environmental chemicals Our findings will be valuable to future biomonitoring within Canada, particularly for forthcoming efforts to make research more inclusive, accessible and without harm for individuals experiencing marginalization. In addition to our rigorous methodology to identify themes in the literature, the strength of our work is enhanced by our consultative PEHE-MIREC process and our use of the socioecological model to map barriers and strategies. Given our focus on higher income regions, our findings are not generalizable to low-income countries. Furthermore, we acknowledge that we assumed a certain degree of homogeneity within marginalized communities and were not able to investigate the impact of overlapping identities or intersectionality.
Conclusion
Engagement, recruitment, and retention of underrepresented communities in pregnancy cohort studies pose unique challenges and opportunities for researchers. Although there is limited coverage in the literature on strategies to effectively engage people from marginalized communities in environmental health pregnancy cohort studies, this review highlights that applying a health equity and social justice lens and following the ethos of ‘nothing about us, without us’ may help address barriers that exist at the individual, interpersonal, community, institutional, and policy levels. These barriers are likely most pronounced among racialized and socio-economically marginalized communities with deeply rooted inequities. Findings from this review may have important implications for planning future longitudinal pregnancy cohort studies and ensuring that communities who are disproportionately affected by environmental chemical exposures may be better represented in research and considered in policy decisions.
Data availability
No datasets were generated or analysed during the current study.
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Acknowledgements
We thank the collaborators and stakeholders from the Prenatal Environmental Health Education (PEHE) Collaboration for their contributions to this review.
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GF received a contract from Health Canada to conduct the scoping review.
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GF developed the search protocol, conducted the search, extracted data, and wrote the first draft of the manuscript. EP, EC, and JAM reviewed the search protocol, search results, and reviewed and edited the manuscript. AS contributed to development of conceptual models and figures and reviewed the manuscript. GF, EP, AS and JAM reviewed the final manuscript.
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GF received a contract from Health Canada to conduct the scoping review.
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Supplementary Material 1. Supplemental Table 1. Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist
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Fazli, G.S., Phipps, E., Crighton, E. et al. Engaging, recruiting, and retaining pregnant people from marginalized communities in environmental health cohort studies: a scoping review. BMC Public Health 25, 908 (2025). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12889-025-22033-7
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DOI: https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12889-025-22033-7