Hispanic women’s perceptions of neural tube defects and folic acid supplementation: A qualitative study

Abstract

Background:

In the United States, the prevalence of neural tube defects (NTD) is higher among infants born to Hispanic women compared to those born to non-Hispanic women. The purpose of this study is to investigate perceptions of neural tube defects and the use of folic acid and folate as a preventive measure among Hispanic women.

Methods:

Purposive sampling was used to recruit Hispanic women from a prenatal clinic in a Northeastern metropolitan city. In-depth interviews were conducted by native-Spanish-speaking researchers using a semi-structured interview guide. Thematic analysis was used to develop themes related to a priori domains.

Findings:

The study sample consisted of 26 Hispanic women representing nine countries of origin. Four themes were revealed: dietary sources of folic acid, awareness of folic acid supplementation/fortification, preferences for receiving health information, and factors in decision-making concerning a neural tube defect diagnosis.

Conclusions:

This study highlights the importance of early and targeted educational interventions sensitive to the cultural needs of this population. Results suggests that current NTD health education efforts may not be sufficient to increase our participants’ knowledge of NTD. Additionally, the disparity may be multi-modal, potentially influenced by insufficient understanding of prenatal/folic acid use and the role of religiosity in decision-making during pregnancy. If Hispanic women are more likely to continue pregnancies affected by NTDs, this could be a factor in NTD disparities. Exploring factors beyond supplementation and fortification that might influence rates of neural tube defects at birth in the US Hispanic population can help inform prevention efforts.

Introduction

Neural tube defects (NTDs) result from failure of the fetal brain and spine to fully develop by the 28^th day of gestation (CDC, 2017). Anencephaly and spina bifida are the two most common NTDs, posing a significant health burden in care and cost (Williams et al., 2015). Infants born with anencephaly die within days of birth, with direct costs of care estimated at $5,415 (Williams et al., 2015; Seidahmed et al., 2014; Grosse et al., 2008). Those with spina bifida have lifelong disabilities costing an estimated $791,000 (Grosse et al., 2016).

A well-known risk factor for NTDs is insufficient maternal folate intake during early pregnancy (Viswanathan et al., 2017). The United States Public Health Service recommends 400 micrograms of folic acid daily for women of childbearing age through vitamin supplementation or consumption of foods fortified with folic acid (CDC, 2022). In 1998, the US Food and Drug Administration (FDA) mandated the fortification of cereal grain products with folic acid (CDC, 2022), resulting in a 36% reduction in the prevalence of spina bifida and anencephaly at birth (National Birth Defects Prevention Network, 2010). Supplementation and fortification with folic acid and folate are considered primary, evidence-based preventive measures for NTDs (Viswanathan et al., 2017; Crider, Bailey, & Berry, 2011).

While rates of NTDs decreased overall, post-fortification studies found that Hispanic women in the US continued to have the highest NTD prevalence (Williams et al., 2015) and lower overall median serum folate concentrations compared to non-Hispanic Black and White women (Pfeiffer et al., 2019). The 1998 fortification mandate failed to include corn masa flour (CMF), a popular staple item in certain Latin American and Hispanic cultures, which may have contributed to the higher incidence of births with NTDs among Hispanic women (CDC, 2022; Flores et al., 2017; Hamner et al., 2009; Williams et al., 2015).

In 2016, the US FDA passed regulations allowing manufacturers to fortify CMF with folic acid (Flores et al., 2018; US Food and Drug Administration, 2016); unlike the mandatory regulations passed in 1998 concerning cereal grain products, the 2016 regulations concerning CMF were voluntary. Regional and national surveys conducted since 2016 have found that most CMF products in the US, both imported and domestic, have not been fortified (Moraga Franco & Greenthal, 2023; Kancherla et al., 2019; Redpath et al., 2018). Early data have not shown a substantial increase in folate concentrations among reproductive-aged Hispanic women following the call for CMF fortification; a moderate increase was found among women living in the US who were less acculturated (Wang et al., 2021). Results suggest that voluntary CMF fortification may be ineffective in increasing folic acid intake among Hispanic women. Additionally, Khalid and colleagues (2023) concluded that voluntary CMF fortification has not been associated with significant reductions in the rates of NTDs in live births among women receiving care in zip codes where people of Hispanic or Latino origin made up greater than 75% of the community.

In addition to fortification challenges, lower rates of reported prenatal folic acid supplement use among Hispanic women may contribute to the increased risk for NTDs at birth (deRosset et al., 2014; Tinker et al., 2010; Yang et al., 2007). The increased risk may be attributable to perceptions of NTD risk, barriers to NTD prevention measures (e.g., folic acid supplementation and folate fortification), or individual decision-making by participants that may be unique to the Hispanic community. Our study investigates perceptions about NTDs, prenatal vitamin supplementation, and folic acid fortification among Hispanic women receiving care at one US facility according to women’s self-reports.

Materials and Methods

Study Design

We used in-depth interviews to explore Hispanic participants’ perceptions of NTDs and folic acid/folate. Descriptive phenomenology guided recruitment, data collection, and analysis (Morrow et al., 2015). The Johns Hopkins University School of Medicine Institutional Review Board approved the study protocol. We adhered to CASP guidelines where appropriate.

Study Setting

Participants were recruited between April and September of 2019 from one hospital’s prenatal clinic and in-patient postpartum unit in the Northeastern region of the US. The selected site has attracted Hispanic residents for decades and serves the region’s five neighborhoods with the highest percentage of Hispanic residents. We chose one site to limit variability in facility culture surrounding prenatal education (Zwelling & Phillips, 2021; Downe et al., 2019).

Sampling and Recruitment

Clinical providers identified potential participants using inclusion criteria: women self-identifying as Hispanic, 18 years or older, and currently pregnant or pregnant within the last year. Researchers provided study information and screened potential participants using purposive sampling to achieve a sample of participants from different countries of origin, time in the US, and formal education levels. Sample size was determined by purposive sampling requirements and data saturation (Saunders et al, 2018).

Measures

The semi-structured interview guide included open-ended questions exploring four domains: 1) obstetric history, 2) NTD knowledge and prevention of NTDs through folic acid and vitamin use, 3) food preparation, and 4) decision-making about NTDs (Table 2). The interview guide was developed from a review of the literature and the Pregnancy Risk Assessment Monitoring System (PRAMS), a surveillance project the CDC developed in 1987 (Shulman et al., 2018). Participants were asked open-ended questions concerning their understanding of NTDs and related subject areas (e.g., cause, prevention, folic acid, fortified foods, prenatal vitamins). For the third domain, participants were asked to describe a typical breakfast, lunch, and dinner, including eating out habits, where they purchased food, and brands purchased. We also collected information about who in the household assumed responsibility for food shopping and meal preparation. Markets and stores referenced were visited to verify whether the brands mentioned were fortified or unfortified with folic acid and whether brands were domestic or imported. The interview guide was revised to explore topics arising from this analysis, which occurred concurrently with data collection.

Table 2:

Interview Domains

Interview Domain	Description
First	Obstetric history
Second	NTD knowledge and prevention
Third	Food preparation
Fourth	Decision-making about NTD diagnosis; two scenarios were presented. Scenario 1: If at sixteen weeks, you had gone to the doctor for a sonogram, and they told you that your baby has anencephaly and will die a few days after birth, what decision would you make? Scenario 2: If you are told at twelve weeks, “Your baby has spina bifida, the baby will live, but will lifelong disabilities, we do not know if it is going to walk, how much it can learn,” what decision would you make?

In early interviews, several participants shared their perspectives on pregnancy outcomes being “God’s will” and out of their control. To investigate this perspective further, we developed the fourth domain to give us further insight on participants’ reactions if presented with an NTD scenario (n=23). In this domain, we asked participants to share their thoughts on and decision-making for two scenarios: sonograms resulting in a diagnosis of anencephaly and spina bifida (Table 2).

Procedures

Eligible participants provided written informed consent and scheduled an interview in a private hospital or clinical exam room. Interviews were conducted orally in the participant’s preferred language of Spanish (n=25) or English (n=1) by native-speaking researchers who identified as Hispanic women and were trained in qualitative data collection and interviewing participants. Interviews were conducted through an iterative interaction between the participant and the researcher, guided by the semi-structured interview guide. Interviews lasted an average of 41.4 minutes and were audio recorded to allow for the detailed collection of participants’ perspectives. Participants were provided a $15 cash incentive at the conclusion of their interview. After each interview, interviewers completed a post-interview form to examine data collection procedures and interview dynamics and to allow for reflexivity (Galdas, 2017). Audio recordings were reviewed by the principal investigator as they were collected. As new topics emerged from participants, questions and probes were revised to explore these new topics in later interviews (DeJonckheere & Vaughn, 2019) and establish trustworthiness (e.g., credibility and confirmability). Audio interviews were transcribed verbatim by a professional company specializing and certified in academic/research transcriptions. Spanish interviews were additionally translated to allow side-by-side analysis in both languages. A modified approach to Brislin’s 1986 model for translating instruments was used for all Spanish language quotes (Jones et al., 2001). Selected interviews were audited for transcription and translation accuracy (n=6).

Data Analysis

Two researchers independently read transcripts, guided by Colaizzi’s phenomenological method of thematic analysis (Braun & Clarke, 2019; Morrow et al., 2015). Transcripts were read in English by a native English-speaking researcher and in Spanish by a native Spanish- and English-speaking researcher. Intercoder reliability was not calculated due to the phenomenological nature of the study and to allow for the discovery and interpretation of multiple participant perspectives (Cheung & Tai, 2021; O’Connor & Joffe, 2020). Significant statements were identified and key themes developed within broader a priori themes of interest. Four research team members, trained in inductive coding, separately conducted line-by-line coding looking for common themes. Through this iterative process, a preliminary codebook was constructed and code definitions were developed. Codebook themes were reconciled with the original codebook and discrepancies were addressed through open discussion among all team members (Barbour, 2001; Chinh et al., 2019). Illustrative statements for each theme were compiled.

Results

Participants

Fifty-four women were screened. Three women declined to participate and 17 were excluded due to purposive sampling criteria. Of 34 women who consented, three were unable to schedule an interview and four were excluded due to age inclusion criteria. The final study sample consisted of 26 women representing nine countries of origin. Demographic characteristics are found in Table 1. The women’s mean age was 29 years, and 14 women (53.9%) had less than five years of formal education. The women were predominantly from El Salvador (23.1%, n=6), Honduras (19.2%, n=5), and Mexico (23.1%, n=6). They had on average spent 7.2 years in the US, with the majority spending five years or less (53.9%, n=14). Most women had one previous child (38.5%) and none had had a previous pregnancy or birth with a diagnosis of NTD, nor a pregnancy termination.

Table 1:

Participants’ Pseudonyms and Demographics

Pseudonym	Age	Education1	Country of Origin	Years in the U.S.	No. of Children
Antonia	31–35	Middle school	Guatemala	11–15	3 or more
Bianca	26–30	University	Colombia	5 or less	1
Celeste	31–35	Elementary	Mexico	11–15	3 or more
Divinia	18–20	University	Puerto Rico	5 or less	1
Ellis	31–35	Elementary	Honduras	5 or less	2
Fernanda	31–35	Elementary	Ecuador	16–20	3 or more
Giselle	21–25	University	Dominican Republic	5 or less	1
Helena	26–30	Elementary	Honduras	5 or less	2
Indigo	26–30	High school	Ecuador	6–10	3 or more
Josephine	31–35	Elementary	El Salvador	5 or less	2
Jacqueline	21–25	High school	El Salvador	5 or less	1
Kaira	21–25	High school	Mexico	16–20	2
Luna	36–40	High school	Mexico	16–20	2
Maia	21–25	Elementary	El Salvador	5 or less	1
Nia	21–25	Elementary	Guatemala	5 or less	1
Ozzie	31–35	High School	El Salvador	11–15	1
Paulina	31–35	Middle school	Mexico	5 or less	3 or more
Quinn	26–30	High school	United States	n/a	3 or more
Rosalie	21–25	Elementary	Mexico	6–10	3 or more
Stefania	26–30	High school	Dominican Republic	11–15	3 or more
Theodora	36–40	Elementary	El Salvador	5 or less	3 or more
Uma	36–40	Middle school	Honduras	5 or less	1
Valerie	26–30	High school	Honduras	6–10	2
Xenia	36–40	Middle school	Mexico	11–15	3 or more
Yasmine	21–25	Middle School	Honduras	5 or less	1
Zara	21–25	Middle school	El Salvador	5 or less	1

¹Highest level of formal education attained.

Four themes arose from our thematic and iterative analysis: 1) dietary sources of folic acid, 2) awareness of folic acid supplementation/fortification, 3) preferences for informational material, and 4) factors in decision-making. Quotes illustrating each theme are provided using fictitious names.

Dietary Sources of Folic Acid

Women reported diets high in domestically produced fortified products. Groceries were purchased in stores within walking distance from homes and were not generally purchased from countries of origin. Legumes, a good source of folate, were reported as a daily staple food. Frequently mentioned food items and corresponding folate levels are reported in Figure 1. Researchers verified that specifically named brands of rice and oats mentioned by the participants were fortified by FDA standards; they were unable to verify unspecified brands of CMF products based on participants’ descriptions.

Figure 1. Dietary Sources of Folic Acid (USDA Nutrient Database for Standard Reference, 2022; FoodData Central, n.d.).

Amount of total folate (mcg) contained per cup of the most common foods cited by participants.

Household foods selected by participants were influenced by family preferences. Traditional diets changed related to years spent in the US, with an observed shift in the types of foods consumed by both women and their families. Women with five years or less in the US reported traditional diets from native countries (e.g., eggs, plantains, beans, maicena/crema¹, jugos²), while women in the US for greater periods of time reported typical US diets (e.g., corn flakes/Cheerios, pancakes, eggs, orange juice, bread). For most, the shift in diet originated from their children or partners, who preferred more typical US foods:

“Since I got together with my husband… he really likes the food here [US], so he got me used to it too. Then, we have all adapted.” (Antonia)

While women reported frequenting Chinese buffets and fast-food restaurants not offering traditional foods, they showed a preference for establishments offering foods from their native countries regardless of the number of years in the US:

“I need the food of my country because here it is different, here people eat a lot of junk food, right? Hamburgers, chips. So, one looks for something that resembles our food.” (Bianca)

Women sometimes visited different restaurants to satisfy family demands:

“[We find] food from our country... tacos, or ají, and for the children, we go to McDonald’s.” (Celeste)

Women with less than six years in the US referenced beans more often than women with more than six years in the US. The reverse was observed with cereal and pancakes – participants with more than six years in the US mentioned those products more than those who were in the US for a shorter time.

Folic Acid Fortification and Supplementation Awareness

All participants but two indicated they were unfamiliar with and were unable to describe the term “fortification.” In addition, they were unable to identify which foods were considered fortified or what was used to fortify those foods. Most often, participants described fortified foods as processed, canned, or whole foods:

“I do not know… they could be meats, but well-cooked and fresh…. They could be vegetables.” (Divinia)

Participants, including those who received all prenatal care in the US, were generally unaware of the meaning of “folic acid.” They reported that they had never heard of folic acid and no physician or nurse had ever mentioned it during prenatal care. When asked PRAMS questions regarding the purpose of folic acid, women were unable to identify why folic acid is necessary for fetal development. However, iron was frequently cited as recommended by providers and described as important for pregnancy and after birth. No differences in perceptions about iron were noted between participants who received prenatal care in the US and those who received prenatal care outside of the US.

All participants reported that prenatal vitamins helped to have a healthy baby, but many were unable to specify why.

“They prescribe that for the child to be in good condition. Because it is what I have been told by doctors, that one has to take vitamins so that the baby is well, so it comes strong at the time of birth and has no problems.” (Ellis)

Fernanda reported that she took prenatal vitamins to help with insomnia: “When sometimes I do not sleep at night, I take them and I fall asleep.” When asked about prenatal vitamin use, the women reported receiving recommendations from family and friends, who said it was “good for the baby” (n=12), with others, like Giselle, reporting that providers gave them a prescription with little explanation.

“They did not explain [prenatal vitamins] to me. One deduces by logic, to take care of the baby, so that everything is fine, but no, they did not explain why [I needed to take them].”

However, side effects from vitamins and pregnancy symptoms influenced whether the prenatal vitamins were taken as prescribed. Fernanda recounted telling her physician that taking the prenatal vitamins made her nauseous only to have the physician tell her that “nausea was normal” and there was nothing to be done about it. So, at subsequent appointments, she simply told her providers she was taking the vitamins even when she was not, because she “could not handle it [the nausea].” The widespread lack of folic acid information among participants was consistent with their incomprehension of folic acid’s role in preventing NTDs, as well as the reported lack of information from their providers about this topic.

Preferences for Informational Material

Participants across the sample shared a preference for charlas — informal chats or talks — with their provider (n=12) as the vehicle for informative materials or education concerning their health rather than pamphlets/brochures (n= 8) or the internet (n=2). Those citing the internet explained that it was used for initial searches on health information, but that “charlas” with their providers were preferred. Women shared a dislike for written information and some women mentioned a preference for videos as a delivery medium (n=4).

Of participants who reported that they had not received healthcare professional-provided education on prenatal vitamins, folic acid, or NTDs, eight later mentioned first taking prenatal vitamins at the suggestion of a provider. When probed, they did not generally consider medical recommendations as health education. Antonia, Helena, and Indigo described being “prescribed” vitamins but said they did not receive education on these recommendations.

Family and friends were important sources of information. Several women mentioned taking prenatal vitamins at the suggestion of a friend who had previously been pregnant.

“A friend who had a baby about nine months ago told me: ‘No, I do not know why you are not yet taking [prenatal vitamins], they are super important.’” (Bianca)

Family members, particularly those with formal medical experience, provided valuable guidance. Divinia noted how she had received little guidance from her providers in the US.

“I have oriented myself, because all my family has been very supportive. My dad’s wife is a doctor and she has guided me. But not here. I have not had any guidance here.”

Generally, women emphasized the importance of receiving information as back-and-forth “talk” or engaging with a healthcare provider over a period of time, similar to the communication of information from their family and friends, rather than simply a provider stating recommendations.

Factors in Decision-Making

A frequent theme in our analysis is that women shared that they felt they had no control over the prevention of a birth defect. When presented with the statement on prenatal vitamins, specifically folic acid’s role in NTD prevention, several women expressed their belief that God ultimately decides birth outcomes and that prenatal vitamins could not prevent something God has ordained. Participants like Josephine, Kaira, and Giselle verbalized an uncertainty of fatality even in anencephaly scenarios, stating they would continue with the pregnancy as there was hope the infant would not be born with an NTD.

“The doctors were there to give us a diagnosis, but the one who makes the last decisions is God. And if maybe they [doctors] were wrong… I’m going to put everything in the hands of God.” (Indigo)

Participants also stated their belief in not being given something one could not handle and that only God could know why a woman would have an infant with an NTD.

“It is difficult, and it is not easy, but I think sometimes, if God gives something like that to you, He knows why He does it, right?” (Luna)

This sentiment was particularly salient when participants were presented with the two scenarios that required decision-making in the context of an NTD diagnosis. All participants expressed that they would carry a pregnancy through to birth regardless of the NTD severity described, and that this desire was motivated by acceptance of God’s will and greater plan.

“God is blessing me, and I would have had it, because I am not going to say: ‘No, he is sick, and I do not want it.’ I do not think so. It would not be fair. I do not lose faith, only if that is the will of God, because I accept it, and if God blessed me and... the next day He takes it from me, well, I accept the will of God, nothing more.” (Indigo)

In the scenarios that included a pregnancy diagnosed with spina bifida or anencephaly, where participants were asked what they would do, most indicated they would continue with the birth (n=24):

“I would continue with the pregnancy. When they are born, it is God’s will. They may live or die, but I would not take their life.” (Maia)

Discussion

We sought to understand Hispanic women’s perceptions concerning NTDs. Study participants generally described diets made up of foods containing folate or folic acid. Accounts revealed a lack of information concerning NTDs and folic acid and a preference for informal talks with providers to learn more. Participants also reported that they would not terminate hypothetical pregnancies diagnosed with NTDs, citing their belief in God’s will.

The perspectives of the women in our study support literature documenting the impact of acculturation on the diets of Hispanic families and the generational shift towards more US-influenced diets as time in the US increases (Arandia et al., 2018; Batis et al., 2011; Hamilton et al., 2015). Study participants reported eating diets that included both folate-rich foods and several foods researchers confirmed to be fortified with folic acid (FoodData Central, n.d.). While women reported buying foods from local stores that were confirmed to be enriched/fortified (e.g., Cheerios, corn flake cereals, pancakes), CMF and soft corn tortilla products may not have been fortified. In a survey of 41 CMF and tortilla products in grocery stores in northeast Atlanta, Redpath and colleagues (2018) found that only two of 20 CMF products were fortified. No soft corn tortilla products contained folate. Thus, it may be important to inform Hispanic women of the importance of purchasing fortified products unless the US FDA makes fortification mandatory.

The quality of diets reported by study participants — generally fortified or rich in folate regardless of time in the US — suggests a need to conduct a larger study of folate and folic acid in the diets of US Hispanic women. More current studies measuring folate serum levels post-fortification are needed to investigate the relationship between Hispanic women’s diets and NTD diagnosis.

The lack of awareness and understanding of folic acid measures for NTD prevention discovered among women in our study is consistent with research demonstrating that Hispanic women are less likely to report knowledge about folic acid’s role in NTD prevention (deRosset et al., 2014) or being counseled about birth defect prevention by healthcare providers (Green-Raleigh et al., 2006; Harelick et al., 2011; Interrante & Flores, 2018), indicating a disparity in the provision of prenatal information. It appears that current prenatal information provided to Hispanic women in the US is not meeting their needs for NTD awareness and prevention. The need for preconception care and information is highlighted by the elevated risk of NTDs in births resulting from unplanned pregnancies because NTDs develop early in pregnancy (Yang et al., 2007), potentially before people learn they are pregnant. Given that higher rates of births resulting from unplanned pregnancies occur among Hispanic women (Health Resources and Services Administration, 2011), greater emphasis should be placed on preconception care and information about NTD prevention across the lifespan. Efforts have been made to decrease NTD disparities among Hispanic women through health literacy advertisements and social marketing campaigns (Mackert et al., 2013), but perhaps these methods do not wholly address Hispanic women’s lived experiences or cultural lens. Our participants’ preference for charlas rather than written material is consistent with reported efficacious strategies for outreach to Hispanic women, such as group-centered care (e.g., Centering), community educators (e.g., promotoras de salud), and concordance of patient-provider lived experiences (Flores et al., 2017; Hale et al., 2014; Schellinger et al., 2017; Tandon et al., 2013). The preference for charlas further emphasizes the importance of perceived engagement through active participation. Some women in our study had a perception that they had not received information concerning prenatal vitamins from their providers even when reporting later that their providers had told them to take vitamins, suggesting that current communication efforts surrounding NTDs and prevention are not targeted effectively toward the Hispanic population. Repetition, a quality used in argumentative writing of Hispanic school-age children, has been found to delineate importance, compared to expository elements favored by non-Hispanic White children (O’Hara-Rines, 2013). Employing storytelling through telenovelas has been demonstrated to be effective in increasing health literacy among the Hispanic community (Borum Chattoo et al., 2020; Gonzalez & Benuto, 2022; Kline et al., 2016; Williams et al., 2016). Thus, charlas could be more efficacious in increasing health literacy among this community of women through the additional use of repetition and storytelling.

Participants’ approach to a scenario of an NTD diagnosis suggests that religiosity may play a role in higher rates of NTDs among the Hispanic community. Currently, the focus of NTD prevention through supplementation and fortification has focused on increased rates of NTD found in live births to Hispanic women. Our findings suggests that the disparity may be influenced by a decision to not terminate in order to “keep hope alive” or follow “God’s will.” In keeping with the themes of religiosity and “keeping hope alive” (Browner & Preloran, 1999) described in Hispanic women’s decision-making surrounding amniocentesis (Seth et al., 2011), a focus on rates of NTD diagnosis in early pregnancy would be warranted to explore whether Hispanic women are more likely to continue with pregnancies affected by NTDs and whether this could be a factor in NTD disparities.

Our study had several strengths. Native Spanish-speaking researchers who identified as women conducted all interviews and knowledge questions were pulled from a validated and reliable survey. Purposive sampling allowed a focus on representation across years of formal education, country of origin, and years in the US. Lastly, concurrent analysis of interviews was conducted in the researchers’ primary languages (English and Spanish), providing an additional layer of reliability and validity to our analytical method (Lopez et al., 2008).

There are several limitations to our study. We could not locate all brands of CMF foods participants mentioned in order to confirm their folic acid content, and we did not collect information about specific quantities and proportions of foods consumed. Another limitation was the lack of provider perspective. We had no confirmation of the information presented by providers in encounters concerning prenatal vitamins, NTD education, and diet recommendations. While the utility of inter-rater reliability in qualitative analysis has been debated, not calculating inter-rater reliability could introduce the potential for interviewer bias (Cheung & Tai, 2021; Chinh, Zade, Ganji, & Aragon, 2019; O’Connor & Joffe, 2020). There is also the possibility of recall bias, both in women’s dietary recall and recall in conversations with providers. Results may not be generalizable to other populations of women living in the United States or to those who receive their prenatal care at different facilities.

Implications for Practice

Decreasing preventable NTD cases is an important public health goal that requires targeted strategies for at-risk groups. NTDs create a heavy emotional toll on families and increased financial burden for both families and the overall healthcare system. Participants’ self-reports suggest that current NTD prevention measures are necessary but not sufficient for informing Hispanic women living in the US about NTDs, prenatal vitamin supplementation, and folic acid fortification. Preferred methods of communication used within the Hispanic community, such as charlas, and an increased sensitivity to the role religiosity plays in decision-making during pregnancy may increase understanding and consumption of folic acid supplementation and the use of folic acid fortified products and decrease the risk of an NTD diagnosis among Hispanic women living in the US.

Our findings also have implications for other maternal health education needs such as birth after cesarean (Mirabal-Beltran et al., 2022), perinatal depression (Recto & Champion, 2017), infant health (Testa & Jackson, 2021; Valenzuela-Yu, 2018), and contraception (Barral et al., 2020). Adverse outcomes in these areas have been associated with a lack of health literacy and disproportionately affect Hispanic women, demonstrating the need for early and targeted educational interventions sensitive to cultural needs.

Biographies

Roxanne Mirabal-Beltran is Assistant Professor at Georgetown’s School of Nursing. Areas of research interest include obstetric/reproductive health, ethnic/racial inequities, and patient-provider communication. An obstetrical nurse of 20 years, she received her PhD from Hopkins Bloomberg School of Public Health.

Katherine Monogue-Rines is a Graduate Nurse at Dayton Children’s Hospital, in Dayton Ohio. She graduated with a BSN from Georgetown University where she was a research assistant and the recipient of the Loyola Award for outstanding achievement in nursing.

Kylie Riva is a Registered Nurse at Overlake Hospital Medical Center’s Childbirth Center in Bellevue, Washington. She graduated with a BSN from Georgetown University where she participated in the Georgetown Undergraduate Research Opportunity Program.

Nandi Dube is a current BA Pre-Med Psychology student at Georgetown University. She is a research assistant at Georgetown University and at Georgetown University Medstar Hospital.

Pamela Donohue is Associate Professor of Pediatrics at Johns Hopkins’ School of Medicine. She is Director of Clinical Research for the Division of Neonatology. Areas of research interest include outcomes and health delivery systems for critically ill infants and physician-parent communication.