Part 1. Demography of interviewed women

In the eight FG carried out, 56 women were interviewed, aged from 15 to 35, 10 in municipality A and 46 in municipality B. Among the interviewees in municipality A, five were pregnant, one had an abortion and was trying to get pregnant, one puerperal woman and three mothers of children up to two years old (among them, one in a new pregnancy). All lived in urban areas and close to the BHU. Most reported being brown, married, having completed high school, and followed the Catholic or Evangelical religion. Most interviewees lived in brick houses with their partner and one to three other people in cohabitation. Most women were self-employed or homemakers, receiving social benefit resources, particularly Bolsa Família Program, a conditional cash transfer program launched in 2003 that focuses on increasing the number of clinical visits by pregnant women to the health service, child health, vaccination and education [24]. Most of the interviewees’ highest income comes from their partner, often not higher than the national minimum wage.

In municipality B, 22 pregnant women, two puerperal women, and 22 mothers of children up to two years of age (three of them in a new pregnancy) were interviewed. All women in the municipality live in quilombola territory. The majority lived far from their reference BHU, said they were brown skin color, were in a consensual union, had completed high school, and were Catholic. Half of the women lived in a brick house and the rest in a mud house. Most lived with their partner, children, and four to six cohabiting people. Most were unemployed, received Bolsa Família, and referred to monthly family income up to a minimum wage. Of the 46 interviewees, 17 reported being the person with the highest income in the family, 16 said another family member and 13 referred to the partner as having the highest family income.

Although there are similarities between the interviewees, women from municipality B are from rural territories, from quilombola communities, live farther from the BHU, and have more difficulty in accessing health services in general. To a large extent these characteristics define perceptions and experiences regarding prenatal care needs and rights, as well as opportunities and barriers to the access to healthcare and the fulfilment of the right to health by women in these communities. This became apparent in the FG discussions and interviews, all of which is explored in the next section.

Part 2. The lived experience of barriers to the enjoyment of the right to health concerning access and quality of prenatal care

Women’s general understanding of human rights concerning access and quality of prenatal services highlighted four main barriers to the enjoyment of their rights: (a) limited personnel and medical equipment as a perception of neglect; (b) timely delivery of services: time matters for perception and experience of rights; (c) misinformation as a barrier to the exercise of health rights; and (d) socioeconomic barriers.

Limited personnel and medical equipment as a perception of neglect

When asked about their rights during pregnancy, most women cited the right to prenatal consultations. All pregnant women interviewed reported that they were undergoing prenatal care. Of the puerperal women and/or mothers of children up to two years of age interviewed, only one did not perform the recommended minimum number of six consultations. Also, most interviewees started prenatal care in the first trimester, demonstrating good prenatal coverage for women participating in the study.

“I think the greatest need, at first, would be… the follow-up, the right to have the assistance.” [A3 –Rosa]

“As far as I know, the government provides help through the unified system to have a follow-up with both the doctor and the nurse." [B2 –Cecilia]

In Brazil, prenatal care for pregnant women at usual risk is recommended by a team of professionals, including general practitioner, nurse, dentist, nursing assistant/technician and CHW. The total number of consultations must be at least six, with interspersed follow-up between doctor and nurse. Whenever possible, consultations should be carried out in accordance with the following schedule: until week 28, monthly; from the 28th to the 36th week, every two weeks; 36th to 41st week, weekly. Besides, the pregnant women should have at least one consultation with a dentist [25].

In the rural municipality, women cited the right to medical consultation and pointed out a weakness in the health system when referring that all prenatal care was performed only by the nursing healthcare professional. Women in municipality A did not mention this frailty.

“There is always a great lack of doctors here; they never are. That’s why we usually have little consultation with the doctor and more with the nurse. Because she’s always here, constantly, from Monday to Friday. It’s something that’s our right, and we don’t have it.” [B5 –Ligia]

“Right now, there is no doctor, we are just followed-up by the nurse. And it’s difficult because in the pregnant woman’s booklet it says that we have the right to consult with the doctor and we don’t have it.” [B4 –Lorena]

The report Birth in Brazil (2014) shows that half of the pregnant women in the North and Northeast regions had prenatal care performed by nurses, in contrast to the other regions of the country, where more than 90% of pregnant women were attended by doctors [26]. In Brazil, prenatal consultations with a doctor and nurse are complementary and not substitute. Physicians are responsible for evaluating and treating pregnant women, for early identification of risk signs, and referral to reference services required [25]. The lack of medical professionals is another negative aspect of prenatal care, which is often the reason for women not to have the minimum number of necessary consultations [27]. While in many countries, midwives perform roles of maternal and child care during pregnancy, childbirth and birth, in Brazil this role is taken by obstetric nurses [28]. However, shortage of such professionals limits provision while requiring greater investments for their expansion and training [29].

The interviewees did not mention the dental consultation during the prenatal period as a right and, when asked, only two women reported having performed it. This right was neither recognized nor guaranteed.

“There’s a major lack of dentists in the countryside.” [B4 –Amelia].

Compared to doctors and nurses, the lower coverage of oral health teams is a factor that makes it challenging to perform prenatal dental care [30]. Data from the National Program for Access and Quality Improvement in Primary Care (PMAQ-AB), which evaluated family health teams that had oral health teams, demonstrated a strengthening and qualification of dental care in prenatal care in the Northeast region in the period from 2011 to 2014 [31]. However, the coverage of oral health teams remains lower than the coverage of doctors and nurses in all Brazilian regions. Furthermore, this distribution is still uneven. Smaller-sized municipalities and women with lower incomes, such as those in our study, still have difficulty accessing this professional, especially because it is a rural area and difficult to access, with a predominance of populations remnants of quilombos, although the Brazilian policy for oral health understands the importance of guaranteeing dental services for this population [13, 31].

The lack of guidance, the low importance given to dental care, and cultural aspects may also explain the low adherence to prenatal dental care. The myth that pregnant women cannot undergo dental consultations is still very prevalent, mainly due to the fear that the procedures may affect pregnancy and this belief is often reinforced by health professionals themselves [32].

In a study conducted in a state in southeastern Brazil, the women interviewed pointed out that they were not informed about the need for dental care during pregnancy [33]. Considering that periodontal diseases during pregnancy increase the risk of pre-eclampsia, low birth weight, and prematurity, dental care, considered safe and effective, must be stimulated during pregnancy [32].

To reverse this low adherence to dental consultations during prenatal care, the Ministry of Health established dental consultations as a priority action, changing the PHC financing logic through the Previne Brasil program. Thus, the transfer of financial resources to the PHC, from the Union to the Municipalities, was linked to the fulfillment of goals initially agreed for seven indicators, one of which being dental consultations in prenatal care [34].

Having access to basic infrastructure for prenatal care was recognized as a right not guaranteed to all women interviewed.

“There is also a lack of material because sometimes we want to hear the child and don’t have sonar. To measure the belly… sometimes it was lacking” [A2 –Mariana]

It is also recommended that prenatal care be performed in a physical area with adequate conditions of hygiene, ventilation and privacy, with minimal equipment and instruments, such as gynecological examination table, sphygmomanometer, stethoscope, flexible measuring tape, doppler sonar, among others [25].

The PMAQ-AB, which assessed, among other issues, the adequacy of the infrastructure of the primary care network, demonstrated that prenatal care concerning the availability of infrastructure was considered inadequate in the country [35]. In the Northeast region, only 29% of health units were considered to have adequate infrastructure, being worse in the North and Center-West regions. This demonstrates that prenatal coverage in Brazil, even though widely distributed, is still carried out in inadequate conditions [35]. Such deficiencies can make it challenging to carry out consultations and exams, compromising the quality of prenatal care [30].

Timely delivery of services: Time matters for perception and experience of rights

Most women from both municipalities recognized the performance of laboratory tests as a right. They reported that their access was facilitated by Rede Cegonha, reinforcing the importance of this strategy for the quality of prenatal care.

“I participated in that Rede Cegonha and did everything for free." [B4 –Lorena]

“Rede Cegonha in the… laboratory, right? It is easier for us." [A2 –Joana]

According to Rede Cegonha Ordinance and other regulations, the pregnant woman has the right to perform prenatal laboratory tests and to access the results in a timely manner [2, 25]. However, for those in the rural municipality, the guarantee of this right was less effective, considering that they often had to travel to the capital or other municipalities or even seek the private service to receive the result promptly, which is especially serious, considering that they are poor women, who depend on income redistribution policies.

“Pregnant women, sometimes, need a simple exam and have to move to another place. In our municipality, there is no support to do these exams." [B3 –Luana]

“The exams that we are expected to have need to be done in the private sector." [B4 –Julia]

In addition to guaranteeing access to laboratory tests, the delivery of results promptly brings financial savings, safety and tranquility for pregnant women [36]. Although women from both municipalities reported the delay in the results, it is unclear whether women recognized the prompt delivery of results as a right.

Another exam recognized as a right by many interviewees was obstetric ultrasound. However, having this right guaranteed was reported as difficult in both municipalities.

“We, at SUS, have a location that provides ultrasound, but for pregnant women, it’s much more difficult because it takes too long! So, we prefer to pay soon and receive it soon.” [A1 –Vanessa]

This difficulty was reported in other studies, in which pregnant women needed to use the private service to perform the exam and receive the result promptly [37]. This reality needs to be modified since the performance of exams during prenatal care is of paramount importance, as it makes it possible to identify and treat comorbidities that already exist or that may occur during the pregnancy and come to affect the pregnant woman and her embryo [26].

Misinformation as a barrier to the exercise of health rights

Regarding the right to receive information during the pregnancy-puerperal cycle, there were many reports that the guidelines offered by health professionals were insufficient, and women expressed the desire to receive more information about pregnancy, childbirth, and child care.

“I think that during prenatal care, we had to have a class, get a baby or a doll. They should show: ‘oh, when it is time to bathe… like this’. Like, about cleaning the navel, you know? Before it [the umbilical cord] falls. This… nothing is informed. We see it in the pregnant woman’s booklet, but not face to face.” [A3 –Rosa]

“It would be good if during the prenatal period the nurse, who is usually the one who makes the appointment, gave this support, thus, already prepared the psychological aspect for this part, for this part of the delivery. It usually doesn’t happen, you know? If you don’t search, don’t read for yourself, you don’t have it” [B3 –Alice]

According to the Rede Cegonha Ordinance, it is women’s right and health professionals’ duty to implement social communication strategies and educational programs related to sexual health and reproductive health [2]. The woman and her family must receive information about prenatal care, hygiene care, physical activity, nutrition, bodily changes, fears, sexual activity, warning signs for childbirth, sexual and reproductive planning, care after childbirth with the women and newborns, mental health and domestic and sexual violence, legal benefits, among others [25].

In Brazil, the frequency of carrying out educational activities and guidance in prenatal care is still low. Developing educational strategies throughout prenatal care contributes to obtaining better obstetric results [38].

The women reported that prenatal consultations were restricted to observing laboratory tests. The information provided was often related to the recommendation to read the Pregnant Woman’s Booklet, with no room for discussion about their doubts.

“If you want to read in the pregnant woman’s booklet, then you get the knowledge. But, about receiving information… no! Because prenatal consultations usually… they are like this: ‘where are your exams?’. Or if you have not done any exams, you are asked to have them. And then, after the exams shown, if everything is fine, then you have to come once a month. Just… that’s pretty much it, right? To look at your face and say: ‘are you all right?’ ‘All right.’ ‘All right then. Hugs’.” [B3 –Alice]

“Because she just wrote down my name and my SUS number on top. ‘Go home, read your booklet, and you’ll understand.‴ [A1 –Vanessa]

“I only received the booklet, and the only guidance they gave me was that ‘every time you come, you have to bring this booklet for us to sign.‴ [B4 –Lorena]

The Pregnant Woman’s Booklet is an instrument to monitor the evolution of pregnancy, in which health professionals must record all procedures and exams performed. In addition, it contains information on healthy pregnancy, baby development, guidelines on breastfeeding and women’s rights during pregnancy, among others [25]. The Booklet is a recognized and guaranteed right, and proved to be a robust information tool for pregnant women, who considered it informative and enlightening. They mentioned having easy access to it and being correctly oriented to always take it with them.

Although it is essential to value the Booklet and recommend reading it, this does not replace the need for the guidance given by professionals and the clarification of their doubts, using language appropriate to each context so that the information is understood. Such a posture favors embracement and strengthens the bond between the health team and the pregnant woman [39].

Some women reported using the internet and applications on mobile devices to circumvent the lack of guidance about the pregnancy-puerperal cycle.

“There’s a lot that we don’t know. You don’t really know. Sometimes I stay at home, I do research. I have an app, I stay there not to do anything wrong.” [A1 –Ana]

Apps have become popular among pregnant women who seek information about fetal health and development during pregnancy. However, there is a need for greater institutional involvement of health professionals in the development of these tools, as well as the provision of guidelines on the use for women, to avoid the spread of erroneous knowledge [40].

The lack of health education and guidance is reflected in women’s lack of knowledge about some of their rights. Although they recognize fundamental rights such as consultations, tests and vaccination, the reports express the users’ desire to learn more about the subject.

“I, at least, don’t know my rights. Lack of guidance, right? We have no guidance.” [B4 –Julia]

“We don’t know [the rights]. You don’t have that knowledge. I don’t think it was ever informed. It is already my third pregnancy, and I don’t… I don’t know it.” [A3 –Rosa]

Women recognized that knowledge about their rights would facilitate access to them.

“We would know how to defend ourselves and put it there, right? Also, argue with the person when they think that we have no rights. Knowing that we have our rights, then we could say: ‘oh, I’m sure my right is this, this and that and there’s no such a thing of you talking like that to me!’.” [B4 –Amelia]

Health education promotes the autonomy and empowerment of individuals and social groups. There is evidence that community mobilization is an effective way to achieve this empowerment [7]. Therefore, it should be used as a strategy to improve individual health. The higher the level of education of the population, the greater the demand for social and health rights [7].

The insufficiency of activities aimed at health education in prenatal care can be attributed to the greater appreciation of objective issues, such as consultations and exams, indicating a biological focus on consultations [41]. This aspect is also emphasized in health care in quilombola communities in general. Cardoso et al. highlight that it tends to be localized and curative, focusing on the biological aspects of the health-disease process, healing, medicalizing, and being fragmented [19]. According to the authors, “this condition is aggravated further when associated with the rotation of professionals, precarious infrastructure for care and institutional racism. These factors are barriers that promote the increase of inequalities in health” [19].

Health professionals still find it challenging to adopt strategies that empower users, either because of their little involvement in activities or because of a lack of government support in this process [42]. Another explanation is that they adopt technical and educational strategies, such as delivering informative booklets, without producing meaning about the information, either through exchanges with professionals or other pregnant women [42]. Without the adoption of strategies that include the uniqueness of the population, which are not just women, but black women, poor, in specific territories, as in the case of quilombola communities, there is no possibility of empowerment. For this, it is also important to invest in the Permanent Education of the health teams from an intersectional perspective [43–45], attentive to the dimensions of gender, race and class, even more so when dealing with rural communities and more especially with black communities, such as the remaining quilombolas. In a society where sexism and racism are structural, different strategies are needed to face the processes that generate inequalities and iniquities. In order to guarantee access to quality care for black women from traditional communities, greater investments in Primary Health Care are essential, with the implementation of the National Policy for the Comprehensive Health of the Black Population (PNSIPN) [46].

Therefore, there is an urgent need to change the paradigm and model of health care for women, adopting strategies that consider their contexts and singularities. It includes promoting their actual participation in decisions and social engagement, such as home visits, listening workshops, and conversation circles [42]. A change in the power relationships established between health professionals and users is fundamental because even in the mentioned devices, relationships of subjection and devaluation of women’s experiences in their health and disease processes can be reproduced [42].

Socioeconomic barriers. In addition, two other difficulties pointed out, especially by users of municipality B, were the difficulty of moving to have access to the BHU and to the maternity. Two critical rights during prenatal care that, although not cited as rights, were claimed as necessary. Distance between the villages and lack of transport were identified as hindering the performance of consultations and exams during prenatal care, as well as causing difficulties in accessing the municipality’s maternity hospital, as they live in regions far from the health centers, sometimes more than an hour’s drive.

“Then you need an ambulance, then call the municipality, and you don’t have it, if you don’t have the money to pay for a car, the situation is difficult” [B3 –Alice]

Alice and Joana–the only women who declared themselves white–reported greater ease in accessing Rede Cegonha services. On the other hand, Ana was the only one that declared itself black and said it recognizes its rights. Such findings reinforce the persistence of race/color inequalities. In the rural municipality, the public transportation is only for the students. Other options for transport are limited. Communities who live far from the health centers usually use school transport to go to BHU in the early morning and return at the end of classes. The difficulty of accessing these communities, without public transportation and local health services, with great distances to be covered in the search for help, impacts the quality and accessibility of services [13, 19].

The lower prenatal coverage in the North and Northeast regions is associated more with barriers to access than with ignorance of pregnancy or personal problems of the pregnant woman [26]. Women living in rural areas have greater difficulty accessing public health services when compared to those in urban areas [47].

Many women reported using social benefits to getting around this situation, emphasizing the Bolsa Família Program.

“Our condition here is very deficient, you know? At least the majority here receives only Bolsa Família.” [B4 –Julia]

The Bolsa Família Program, created in 2003 as a strategy to fight poverty in Brazil, has great importance in the lives of the families that receive it since family income depends significantly on this benefit [48]. This program encourages families to seek preventive health care, with significant effects on pregnant women’s and children’s health [48]. The literature points out that the quilombola communities’ members, who generally carry out rural and/or subsistence work, still depend on this type of income transfer program [13].

All of these problems ─ distance and transport ─ are related to socioeconomic limitations, that are more severe in Brazilian afro-descendant populations, as the quilombolas. Racial vulnerability directly interferes with access to health services. In Brazil, women of brown/black race/color, who corresponded to most participants in this study, appear in worse socioeconomic conditions and prenatal care [49]. The black population has significant participation in the constitution of the Brazilian population, a majority presence among SUS users, and worse social and health indicators [50]. In addition to the historical exclusion marked by prejudices from society, this group is marked by the lack of specific actions to overcome this inequality [49] which justifies the need for specific policies to guarantee the rights and a better quality of life in these communities [51].

In 2009, the government established the PNSIPN [46]. This initiative sought to guarantee the right to health of this population by including themes such as racism and health of the black population in the training of health professionals, encouraging scientific production, recognizing popular health knowledge and practices, expanding access by the black population to health services, among others [46].

PNSIPN brought to the fore a discussion about intersections between gender and race as a specific point of action for the health of black women, since racial inequality interacts directly with gender inequality [43–45, 52]. Racism and sexism are structural factors that produce social hierarchies associated with health vulnerability, possibly associated with the worst social and health indicators of black women, contributing to the maintenance of high rates of early morbidity and mortality or preventable causes [50].

Part 3. Vaccines in prenatal care: A consolidated right in Brazil?

Vaccination was presented as a positive point of prenatal care. Most interviewees recognized it as a right and reported that they had access to it.

“[I received the vaccine] too much! My Pregnant Woman’s Booklet is full. Then we will take what is necessary for the child, it is more for the child that we take, right? And then it prevents many diseases.” [B5 –Ligia]

“I received all the vaccines here [at the BHU]." [A1 –Jessica]

Vaccination during pregnancy aims not only to protect the pregnant woman, but also the protection of the fetus. The Brazilian National Immunization Program (PNI), of the Ministry of Health, recommends the vaccination of pregnant women against diphtheria, tetanus, pertussis, hepatitis B and influenza [25, 53]. The PNI is a successful Brazilian public policy, which has contributed to a significant reduction in cases of vaccine-preventable diseases, such as measles, pertussis, polio, and diphtheria. PNI covers all life cycles and has different vaccination schedules for particular groups, such as pregnant women [53]. An example of a successful experience occurred in Alagoas, a state in the Northeast of the country. After an increase in pertussis cases in 2013, a reduction was observed after introducing dTpa (the vaccine against diphtheria, tetanus and pertussis) in the national calendar of the pregnant woman in 2014 [54].

Among users interviewed in the PMAQ-AB, 97% reported having updated the tetanus vaccine during prenatal care [30], consistent with the women’s report in our study. There has been much progress in vaccination coverage in Brazil and vaccination has been recognized by women in this study as a successful case of coverage and achievement of their right to health. However, the population’s search for vaccine in recent years has decreased, and the vaccination coverage has not reached the goals advocated by the WHO [55].