Infant mortality, defined as the death of a baby before its first birthday, is a growing concern nationwide. The infant mortality rate (IMR), is calculated as the number of infant deaths per 1,000 live births, serving as a key indicator of a region's overall health. In Indiana, 524 infants died before their first birthday in 2023 (1). The infant mortality rate in Indiana for 2023 was 6.6 (per 1,000 live births), which is higher than the national rate at 5.6 (1). The leading cause of infant mortality in Indiana in 2023 included perinatal risks (48.5%), congenital anomalies (19.7%), sudden unexpected infant death (18.2%), other (10.6%), and assaults/injuries (3.0%) (1). Indiana ranks 13th in the nation for rates of infant mortality (2). Prenatal care is essential part of achieving healthy birth outcomes and lack of early prenatal care or no prenatal care is a direct contributor to infant mortality (3). Inadequate prenatal care is linked to increased risk of prematurity, stillbirth, early neonatal death, late neonatal death, and infant death, particularly for women of color (4). Prematurity and low birth weight, often detected and addressed through prenatal care, are top contributors to mortality risk (5).

Hispanic infants in Indiana experience significant health disparities in infant mortality compared to White infants. Infrastructure and policy issues, effects of systemic racism and bias, insecurity of the Hispanic community, dissatisfaction with maternal care delivery, issues in navigating maternal healthcare, and limitations to holistic models of care have been identified as challenges for Hispanics in the perinatal period who live in Indiana (6). Among Hispanics in Indiana, the infant mortality rate was 7.0 (per 1,000 live births), higher than both the state (6.6) and national rate (5.6) in 2023 (1). Out of 79,000 live births in Indiana in 2023, 12.3% were Hispanic. The Hispanic population had the highest number of mothers on Medicaid (67.2%) compared to non-Hispanic Black (66.2%), and White (30.9%). Hispanic mothers were the least likely to receive early prenatal care (44.4%) compared to non-Hispanic Black (42.9%), and White (23.4%). Hispanic infants were more likely to experience low birth weight (8.4%) compared to White infants (7.4), and preterm birth (10.1) compared to White infants (10.5) (1).

Hispanic women's community-based beliefs may impact their ability to access prenatal care in a timely manner and practice evidence-based care for their infants. For instance, Hispanic women and other women of color have reported preferring advice and support from their family members, partners and peers during their pregnancy, delivery, and postpartum over that from health care providers (7). While communities can provide emotional and tangible support for Hispanic women, gaps may exist in providing evidence based practices on how to prevent infant mortality. The risk for infant mortality can be reduced, but in some communities of color, the issue may not be perceived as preventable, with women rather seeing infant mortality through a fatalistic mindset (8). These beliefs may serve as a barrier to implementing effective strategies (e.g., safe sleep, breastfeeding) to reduce infant mortality for Hispanic women and other women of color (8).

Given the high rates of infant mortality in the Hispanic community in Indiana, health care providers who can effectively communicate about infant mortality and have an understanding of Hispanic community's beliefs is important. However, women have reported a lack of motivation to obtain care and poor knowledge of the impact of prenatal and preconception care on the health of the mother and offspring (9). Hispanic women may be reluctant to seek advice and care from healthcare providers due to negative perinatal experiences. For example, in a study of Hispanic women and other women of color, participants described a lack of knowledge surrounding pregnancy in addition to challenges communicating with clinicians in the perinatal period. Participants described experiences of being ignored, lack of empathy from clinicians, and the need for self-advocacy (7). Better understanding how the Hispanic community currently conceptualizes infant mortality and its causes equips practitioners to address gaps in knowledge or understanding.

The purpose of this study was to describe the beliefs that comprise the Hispanic community's understanding of infant mortality.

This study used a qualitative design and data was analyzed using a Constructed Grounded Theory approach (10). This study was approved by the Ball State University institutional review board (IRB; 960087-2). Semi-structured, in-depth interviews are a typical method for data collection in qualitative studies (11). We selected Constructed Grounded Theory as an appropriate method to build a description of beliefs that comprise the Hispanic community's understanding of infant mortality. According to Charmaz (10), theories constructed from the data are interpretive portrayals of the studied phenomena built on research participants’ world views as well as the researcher assumptions that are brought to the research process and analysis. Our results are grounded in participants’ experiences, but also constructed from the perspective of the research team, including women who are not Hispanic, nor have given birth, as well as Hispanic women who have given birth. All members of the research team have college degrees. No one on the research team experienced the death of an infant before age one.

Ten participants were recruited from contacts of the Northern Indiana Hispanic Health Coalition (NIHHC), located in Elkhart, Indiana in the northern region of the state. Elkhart, Indiana has high infant mortality rates compared to the state averages. Among Hispanics, it has one of the highest infant mortality rates in Indiana at 6.9 (1). We recruited participants by reaching out by phone to past attendees of NIHHC-sponsored health fairs who fit our eligibility criteria (older adults, young mothers and fathers, and teenagers). We aimed to include a wide range of participant demographics, both in terms of age and parenting status, in an effort to capture a wide range of perspectives on a community's understanding of infant mortality. We employed maximum variation sampling to that end (12). Demographic information is included in Table 1.

If the contacted individuals agreed to participate, we asked the participants to arrive at the NIHHC at a designated day and time to sign an informed consent, complete a demographic form, and be interviewed. Participants received compensation in the form of a $20 gift card for completing the 30–40 min interview. The one-time, one-on-one, in-depth interviews were conducted by bilingual members of the research team (first and second authors) and audio-recorded with informed consent of the participants. Most interviews were conducted in Spanish, unless a participant preferred to speak in English. The 13-question interview guide was developed by the research team and aimed to assess participants’ understanding of what constitutes a healthy pregnancy and a healthy infancy, as well as their understanding of the causes of infant mortality and perceptions of whether it can be prevented and by whom (see Appendix for complete interview guide). While most questions remained the same across participants, some questions differed slightly depending on the sex and age of participants. Audio files were transcribed verbatim by members of the research team in the language the interview was conducted in and the text transcripts were thus analyzed in respective languages by members of the research team. For mono-lingual English speakers of the research team who helped code the transcripts, we used AI to translate the Spanish transcripts to English and then had a bi-lingual member of the research team conduct back-translation to ensure accuracy. English translations are the ones included in the results.

We used the constructed approach to Grounded Theory (10) to identify major themes in the data, with a goal of assessing the Hispanic community's understanding of infant mortality. Analysis was comprised of line-by-line codes for each of the 10 transcripts. Line-by-line coding is a way to carefully organize small segments of data from the transcripts into short summary phrases. We employed the constant comparative method, advanced by Glaser and Strauss (13), to compare data against data and establish distinctions between line-by-line codes. In the line-by-line coding process, we kept analytic memos that identified emerging ideas for the development of focused codes. Consistent with Charmaz's (10), these memos were useful to begin to synthesize and explain larger segments of data and to pull together ideas that coalesced within line-by-line codes. The resulting focused codes were then compared and contrasted through the constant comparative method, with attention to negative cases. We constantly checked the focused codes, to ensure they reflected the data, by returning to the transcripts to refine the codes within the data.

Data was saturated and no new themes were emerging from the data after the ten interviews were complete, thus we are confident we reached theoretical saturation with the results presented in the manuscript. As a way to establish the “confirmability” of the results, we used multiple coders from members of the research team (first, second, fourth, and fifth authors) to analyze the data. Focused codes between the coders were compared. The codes largely matched and were thus synthesized in the results.

Analysis from the in-depth interviews showed a conceptual connection between infant mortality and parental neglect. In other words, participants often linked the words “infant mortality” to the concept of negligence. Participants commented about the role of parental neglect in infant mortality, often blaming parents for the failure to care for their children adequately. One participant illustrated the connection by describing specific situations where lack of attention leads to a fatal accident, reinforcing the idea that infant mortality is a result of parental neglect:

Another participant stated, “Infant mortality [is] when they die due to negligence. Because most of the time it is either the negligence of the parents or the negligence of the doctor, but it is negligence on either side” (Participant “LG”). This quote alludes to medical negligence, however, medical negligence was not salient enough as a subtheme, as evidenced in multiple transcripts, to be named as such in this study. Another participant (“Participant “L”) stated that infant mortality “could be parents or the mom is doing drugs during the pregnancy or just parents just not taking care of the baby like they should, having responsibilities, how do I say it, just not being responsible.” One participant summarized by saying, “As a bad parent, you don't pay attention to them [the infant] … and it is like it happens to worsen the little problem they had” (Participant “J”). A recurrent theme in the interviews was that parental neglect could contribute to infant mortality, with participants suggesting that the lack of proper care could be deadly.

Due to an underlying belief that infant mortality has something to do with parental neglect, participants focused on the role of responsibility in parenting. There was a perception that parental responsibility is central to prevention of infant mortality. Participants suggested that keeping children away from external threats, such as open stairwells, and acting quickly if a medical illness or emergency arises, could prevent infant mortality. Prevention of infant mortality was linked to concepts such as responsibility, readiness to be a parent, and attentiveness. One participant stated:

Another participant stated, “I think [infant mortality] happens because you don't take good care of your children because sometimes many people don't take the responsibility of having a child and we take it as a second thing, as a second priority” (Participant “F”). The participant linked unsafe sleep, poor nutrition, or failure to attend to concerns in pregnancy as a failure to be responsible.

Participants discussed the importance of being a parent when your body is physically capable to carry a child and when you are emotionally ready to be responsible and attentive to the child, such as having a willingness to take the child to the doctor's office and do other necessary things. Participant “L” stated, “I feel like it's not being ready for a baby, [that's] a big part of infant mortality.” Participant “A” discussed the components that need to be in place prior to having a child: “Besides emotional stability… social stability, economic stability, that is to say, [there needs to be] stability at all levels. Social, personal, financial, in every sense, because any of those things being wrong makes the pregnancy not as healthy as we would expect it to be.” Another participant summarized that a person needs to be “focused on raising their baby” (Participant “A”). In the case of being “too young” or unprepared, one participant discussed the sequelae: “So they are hit with all of these responsibilities they weren't ready for, and they get stressed out and do not take care of the baby like they should, and unfortunately babies could get sick or something bad happens to them, they fall or something like that” (Participant “F”).

The findings of this study should be considered within the context of its limitations. The study utilized a qualitative descriptive design with a small, localized sample of Hispanic participants in Indiana. Recruitment bias may be present due to participants being past-participants of the NIHHC health fairs, thus they may be more inclined to consume health-related information compared to the general public. This limits the extent to which the findings can be applied to other populations or settings beyond the study's local context. Second, since the interviews were conducted in both English and Spanish, there is a possibility of meaning being altered during translation or transcription. Although efforts were made to preserve participants’ original intent, subtle linguistic and cultural expressions may have been lost or interpreted differently. Additionally, self-report data is subject to social desirability bias. Participants may have framed their responses in ways they believed were expected or socially acceptable, particularly regarding sensitive topics like parental negligence or teen pregnancy and dpending on their comfort level speaking to a Hispanic or non-Hispanic interviewer and their ease in speaking the language they chose for the interview. Finally, we recognize the research team was the instrument through which the data was transmitted and interpreted and this comes with limitations based on the analytic experience of the researchers; in other words, we may not have been able to adequately capture participant meaning. The study offers valuable insight into culturally rooted beliefs and perceptions within a historically underrepresented group. By design, there was a large range of participant demographics included in the study (i.e., age, marital status, parental status). In general, there was broad agreement across the whole sample with regard to the the themes described in this study, however, potential subthemes salient to sub-populations in the sample should be explored in a future study.