Incorporating an intersectional gender approach to improve access to maternal and child health screening services

For the past two decades, the Pan American Health Organization (PAHO) has promoted actions toward eliminating mother-to-child transmitted diseases in the Americas, with an initial focus on HIV (human immunodeficiency virus) and syphilis. In 2016, two additional diseases were included – Hepatitis B and Chagas – as described in the “Framework for the Elimination of Mother-to-Child Transmission of HIV, Syphilis, Hepatitis B, and Chagas” or EMTCT Plus. Chagas disease although mainly found in Latin America, with 70 million people at risk of infection and causing 546,000 disability-adjusted life years (DALYs) [1, 2], can now also be found in the northern hemisphere due to migration. However, since the vector is not found in many northern countries [3] the main concern is transfusion and maternal-infant care since seroprevalence of individuals from Chagas disease endemic countries can be as high as 18% [4]. In Guatemala, there are still some areas with high disease transmission with seroprevalence in women of child-bearing age of 10.5% [5]. In this sense, Guatemala as a member state of PAHO, has assumed the commitment to improving coverage and access to family planning services for women of reproductive age, including antenatal, delivery, and postnatal care, screening, vaccination, and treatment programs for EMTCT [6]. In 2019, the Guatemalan National STD (sexually transmitted diseases), HIV, and AIDS (acquired immunodeficiency syndrome) Program reported that HIV, syphilis, and hepatitis B tests were performed on pregnant women with at least one prenatal check-up. The tests performed in the country indicated that 0.82% of women tested positive for HIV, 0.21% for syphilis, and 0.19% for hepatitis B [7].

National policies in Guatemala have not yet reached the goals set out by the PAHO [8]. We argue that local initiatives that draw on community engagement are essential in the implementation of EMTCT Plus guidelines through a culturally appropriate approach. In rural and ethnically diverse regions of Guatemala, where the healthcare system is often underfunded, local midwives are key actors in providing maternal and child healthcare at the community level [9, 10]. The contribution of midwives to the national health system is officially recognized and incorporated in formal guidelines implemented by the Ministry of Health (MoH) [11], where midwives are increasingly acknowledged as important actors and stakeholders in the delivery of overall health care, going beyond women’s and children’s health. Midwives have the potential to be relevant actors in the EMTCT Plus objectives, particularly in the role they play in detecting, treating, and monitoring HIV, syphilis, hepatitis B, and Chagas patients. Overall, the role of midwives provides culturally appropriate and sustainable points of articulation between the healthcare system and the community, streamlining the implementation of screening and treatment programs, especially in rural and remote areas [7]. However, midwives – particularly those articulating different knowledge systems – tend to be excluded and marginalized from the mainstream healthcare system [12]. We take midwives as the central point of our analysis to consider how intersectionality is crucial in the development of culturally targeted and tailored programs that consider community engagement from their inception.

In 2019, our interdisciplinary team conducted a research project to strengthen the EMTCT Plus framework in Guatemala in the municipality of Comapa, Jutiapa, a context where perinatal care, gender inequalities, and power structures emerge as interrelated social determinants of health [13]. The project has consisted of subsequent phases necessary to conduct a contextually tailored program, designed with an intersectional approach, that will culminate in the production of culturally appropriate educational and communicational material for the promotion of screening and treatment of EMTCT Plus diseases [14]. The objective of this project is to incorporate an intersectional gender approach in the relationship between the local health care system and midwives, through a collaborative process of development of educational material on vertically transmitted diseases. The desired result is to strengthen the public health care system by reinforcing preventative health practices regarding mother-to-child transmitted diseases.

This research project has resulted from a collaboration between the Guatemalan Ministry of Health (MoH), the Universidad del Valle de Guatemala, and the international NGO Fundación Mundo Sano. The multidisciplinary research team – consisting of anthropologists, biologists, public health specialists, doctors, epidemiologists, and other healthcare personnel from the study area (i.e., nurses, vector control staff, midwives) – allowed for a comprehensive understanding of the problem of vertically transmitted diseases.

Observations, interviews, focus groups, workshops, and literature reviews have yielded a complex picture of the situation of EMTCT plus diseases in Comapa. The relationship between the different stakeholders, as well as with midwives, reveals the functioning of the healthcare system. Sociopolitical and historical factors are crucial in understanding the current social role of midwives in their context. We argue that understanding the interactions between the different knowledge systems (and the meanings of health, illness, and nature) determines the success of public health policies on the treatment, diagnosis, and administration of EMTCT Plus diseases and mother–child health in general.

One of the biggest challenges in the implementation of health programs is the complexity of the concepts of health and disease in culturally diverse contexts [42]. Therefore, the success or failure of an intervention is largely dependent on its cultural appropriateness, that is, on its capacity to consider the particularities of the target group, its acceptance within the community, and its sustainability [20, 43].

The burden of social determinants of health on the diagnosis, treatment, and prevention of EMTCT Plus diseases demands a focus on social factors in the design and implementation of this health strategy. Historical, economic, political, and institutional characteristics influence a person’s degree of vulnerability to disease. This implies “having sufficient knowledge of the mechanisms influencing health inequities and adopting a conceptual framework that not only clarifies the relationship between social determinants and health inequities but also helps to identify entry points for intervention” [44].

Additional complexity is provided by the multiplicity of cultural patterns found within the region, requiring not only attention to general structural determinants of health, such as poverty, illiteracy, or labor status but also to more nuanced cultural features, such as land tenure conflict, alternative notions of health and illness, and different kinship patterns [45]. The targeted and tailored approach to health promotion programs described by Kreuter et al. (2003) proposes interventions tailored for “a defined population subgroup that takes into account characteristics shared by the subgroup’s members” and makes use of five strategies to carry out a program in a culturally tailored manner [17, 25, 46]. These strategies (mentioned in Fig. 2) help address the intersections, complexity, and heterogeneity of people in a community based on individual factors, experiences, and their relationship with the broader system [20]. They also generate a more intersectional approach by demanding knowledge interactions between different sectors and disciplines and a consultative process with all stakeholders [25].

Recalling that intersectionality can serve as a method – described above – as well as an analytical tool [21, 46], we now focus on this second aspect of the concept by identifying the categories highlighted by Ghasemi. et al. (2021) emerging from our project design and implementation: intersecting categories, multilevel analysis, power, reflexivity, time and space, diverse knowledge, and social justice and equity [18, 20].

The cultural context and historical framing of the current project have been the starting point of the research agenda of the interdisciplinary team. The production data collection process captured the historical background and cultural characteristics of the local inhabitants of Comapa, produced through the consultation of archival material and field research, and shed light on social, economic, and political categories shaping the experiences of health in the region. Since social stratifying categories (ethnicity, gender, race, social status) are closely linked to other determinants of health (economic, environmental), an intersectional analysis reveals how different social stratifies interact with one another to condition access, prevention, control, and management of health [19, 20, 25].

A focus on midwives and vertically transmitted diseases meant that our research participants were primarily women. Working in collaboration with local midwives is imperative to promote ethnic and gender equity through the development of culturally appropriate educational and communication material. However, given the patriarchal structures of the rural communities in Comapa, we found ourselves often having to talk to men and needing to be accompanied in the field by a male fieldwork technical staff, as we were mostly female researchers. Thus, we unpack gender categories from the inception of the research project [20, 45].

Male involvement in health-related processes (specifically EMTCT Plus disease processes) is a complex issue. Midwives interviewed mentioned prohibitions imposed by husbands on their wives that relate to pregnancy management: birth control, capacity to attend pregnancy controls at the local health center, inability to attend the hospital without male patronage, and lack of permission of midwives to see the pregnant women without the husband’s consent or presence. For women, refusing to comply with these types of prohibitions means placing themselves in vulnerable scenarios that could also have repercussions for the midwives. One response to this situation is for the women to visit the local health care center without the knowledge of their partners, with the support of the midwives and nurses, who keep the women’s ID cards so that their husbands/partners cannot find them. A multilevel analysis (individual, interpersonal, organizational, and national) reveals that access to health care is dependent not only on infrastructure but also on social determinants and cultural patterns [20, 25].

Success in preventing and controlling EMTCT Plus diseases requires socioculturally appropriate and gender-sensitive strategies that engage local stakeholders and address ethnic, gender, and economic equity. It is not always easy to identify which essential players need to be involved in the process for it to be socioculturally appropriate and gender sensitive. The participation of multiple stakeholders, from midwives to the national level of health with whom we maintain close dialog throughout the design and implementation of this project, has aimed to produce consistent, respectful, and culturally appropriate content that should have acceptance at the community level, as well as be consistent with the national policy guidelines around EMTCT Plus [18, 20]. Through the application of evidential strategies, we found that most actions around diagnosis and treatment were already in place for the four diseases; therefore, our proposal focuses on the development of educational and communication material strategies that integrate and intersect HIV, syphilis, hepatitis B, and Chagas disease from a congenital perspective [17]. Furthermore, the challenges of consistently implementing a homogeneous testing strategy may result in an uneven application of healthcare practices, as well as the different levels of equipment of the various health care centers. Uneven population densities, access roads, and multiple social and geographic conditions affecting each locality determine the number of people who make it to the local health care centers as well as their demographic characteristics [45]. This is important to note when developing screening and treatment programs so that they consider the particularities of each locality. Therefore, proposing the development of educational and communication material that integrates testing and perinatal care algorithms can strengthen the current services offered to pregnant women. We have taken Comapa as our case to analyze its local characteristics and how they demand special attention when designing health interventions.

The use of constituent-involving strategies that consider processes of community engagement was applied throughout the entire development of the project. Additionally, our team had worked during previous years applying community engagement strategies focused specifically on congenital Chagas disease [14, 17]. This participatory model served as a base for the EMTCT efforts, as some relationships and rapport were already built with personnel from the MoH and other government and nongovernment institutions related to maternal-infant health issues, including midwives at the core of the efforts [25]. While the participation of different stakeholders through a consultative process has been a fundamental conceptual and methodological tenet of this research, we have had to navigate the multiple power struggles and hierarchies present between different knowledge systems and other social and cultural tensions [10, 34]. It is not easy to transform social and cultural patterns, but we agree with Hankivsky et al. (2010) that through intersectionality and gender-sensitive research, it is possible to overturn structural inequalities by developing methods that elucidate power and have the potential for social change [47].

The stakeholders' map (Fig. 4) served to understand the power dynamics that facilitate or hinder the roles of each actor. Although there is a national law regulating midwives’ activities, at the local level, midwives often encounter multiple barriers. For example, from the MoH perspective, only the midwives who attend a certain number of workshops at the local health care center are officially certified. Therefore, another layer of unequal power dynamics emerges between “certified” midwives and “empirical” midwives [25]. Having worked only with the “certified” midwives, we have had to exclude the perspectives of “empirical” midwives as well as the women they attend.

The constant consultation with the community, organized through the personnel of the local health care center, has the intention of facilitating and encouraging communication channels between the different health agents. Therefore, while centralizing events (focus groups, consultations, and work with accredited midwives) may imply the reproduction of preexisting hierarchies of power, it also aims to overturn these hierarchies from within through the very intersectional methodology [10, 14, 25, 34].

The work with midwives was also part of our sociocultural strategies, which aimed to identify and consider the particularities of the target group. Although there has been an increase in pregnant women attending the local health care center for their prenatal check-ups and delivery, there are still many women who continue to seek midwives for pregnancy-related care, whether from their community or a neighboring one. A preference for midwives may result from the value of their alternative knowledge and more personalized service, but it can also be related to the lack of access to institutional healthcare services [16, 45]. For example, in some communities, there are no adequate roads to easily reach the local health care center, and finding transportation can have an economic cost for the patients and their families. Midwives also incur a cost for the families, as opposed to the local health care center, which is free of charge. This implies that economic valuations play a role in people’s decisions when seeking health assistance.

Midwives fill gaps left unaddressed by public health institutions, which do not always reach the whole population. However, they cannot exist independently from it. For example, midwives are not trained to take blood samples, which is part of the EMTCT Plus goals. Therefore, the strategy developed understands the complementarity of the two systems, in this case, enhancing midwives' referral of women to the local health care center for their perinatal care and delivery but empowering them to be the first port of call for questions about EMTCT Plus diseases [14].

A strategy to ensure this has been the development of educational and communication material to be used by the different stakeholders (public health institutions, NGOs, and midwives) targeting different audiences: healthcare personnel in their education of midwives and midwives in their transference of the message to pregnant women [14, 17, 20]. Considering that midwives could have a key role in the implementation, the material should include their sociocultural perspectives and their knowledge and should be adapted to their literacy level and preferred language. Using linguistic strategies and peripheral strategies helped us tackle these issues [17]. The development and validation of the material is part of the following stage of the project, currently underway.

To conclude, we outline key contributions resulting from a participatory research project that takes gender intersectionality as a methodological and analytical tool as central to improving access to maternal and child health screening services.

First, the integration of the theoretical perspectives of intersectionality and social determinants of health in an illustrative figure (Fig. 1) has aimed to clarify the practical implementation of these theories in programs of cultural tailoring. Second, the development of a stakeholder map (Fig. 4) of relevant actors is transferable for the implementation of other community development initiatives, with its context-specific adjustments. Identifying important local, national, and regional actors that should be coordinated in implementing health programs is a complex task that can only be achieved through fieldwork, long-term engagements within the field, and building respectful relationships with multiple partners, ideally from diverse disciplines. This process unpacks the structures of the healthcare environment but needs to consider the people who fill the positions, as these changes are susceptible of political shifts which may influence the predominance of certain structures over others. Third, the identification of the diagnosis, prevention, and treatment routes for the four EMTCT Plus diseases (Fig. 5) was a useful and potentially transformative contribution, as it enables the improvement of future health practices supporting women’s and children’s health. The development of a unified and integrated protocol for diagnosing and treating these vertically transmitted diseases is the focus of ongoing projects at the partner NGO, and empirical research such as this, which produced relevant data for the development of public policy, is a valuable contribution.

Finally, although not extensively, this project has aimed to demonstrate a possible way of implementing culturally tailored health programs designed through a participative methodology, sensitive to gender issues, and intended upon the creation of concrete deliverables for the use and benefit of the target community (educational and communication material for midwives to use with the women they provide care to and for the local health care center to use in the training of midwives). A key purpose of these materials will also be the shifting of power relations within the conventional biomedical system, where midwives (and their alternative knowledge) are often subsumed under the hierarchy of biomedical science. In the upcoming phase of development of the materials and their pilot use within the community through participatory methods, we hope to engage the different actors in conversations that generate space for dialogue in a more equal standing. Whether this can be achieved remains to be seen. The importance of such an objective is that the methodology itself is a key element in the pursuit of the goals of the project and has a transformative intention.