In a nationally representative sample, we found that Spanish-speaking families with premature infants were more likely than English-speaking families to have concerns about their child’s early development and less likely to have a medical home or have been diagnosed with general developmental delay. Spanish-speaking families were also more likely to report that their child’s providers lack cultural sensitivity, they are less likely to feel like a partner in their child’s healthcare, and were less likely to report that their child was receiving special education services compared to English-speaking caregivers. Our study reinforces that inequities accessing healthcare and developmental services continue to exist for NEPL families, and it builds upon the existing literature by showing that these disparities are even more profound for NEPL families with premature children.
Premature children are at higher risk of developmental delays, including delays in language, sensory processing, and cognitive and motor impairment, making them a population that requires particularly close follow up.31 Access to a medical home, which has been shown to improve health and developmental outcomes, is especially important for these vulnerable, often medically complex children.32,33 Spanish-speaking caregivers in our study, however, reported difficulty accessing a medical home for their premature child. While the cause is multifactorial, inequities in NEPL families’ transition home from the NICU – such as being more likely to be discharged without a scheduled follow up appointment or to be provided discharge instructions that have not been translated into their preferred language – are likely contributing factors that can easily be addressed.14,34,35 Without ensuring that families have access to a medical home, Spanish-speaking caregivers with premature children are at a systematic disadvantage in their ability to have their child’s medical and developmental needs addressed.
In addition to having difficulty accessing a culturally competent healthcare provider and medical home, our study showed that Spanish-speaking caregivers had more concerns about their child’s early development. Similar findings have been documented in the literature, although not specific to premature children. For example, Spanish-speaking caregivers of children with autism spectrum disorders are more likely to have concerns about the behavior and development of their school-aged child compared to English-speaking caregivers.36 These studies, however, do not provide insight into the potential mechanisms of why NEPL families often feel their concerns go unaddressed. While difficulty obtaining health care is one possibility, community and cultural differences, such as deference to professionals, may also lead families to feel less comfortable asking questions to their healthcare providers. 37,38
Language concordance also plays an important role in fostering a productive relationship between patients, families, and healthcare providers. Our study demonstrates that Spanish-speaking families, regardless of whether their child was born premature or term, were more likely to report that they do not feel like a partner in their child’s healthcare, do not feel like providers listen to them or provide them with specific information, and do not feel like they have enough time with providers. Spanish-speaking families were also less likely to report that providers spend enough time with them or respect their culture. Prior research indicates that when caregivers are actively engaged members of the medical team patient outcomes improve; yet, families that speak languages other than English are consistently less likely to be involved in rounds and understand their child’s medical diagnoses and discharge plans.6,7 Differences in family centered decision-making and perceptions of healthcare providers may be difficult for NEPL families to express concerns about their child – assuming they have access to a provider at all.
In addition to having a medical home and access to culturally competent healthcare providers, the school system is an additional avenue that can improve the health of vulnerable children.39–41 Premature children are also at higher risk of falling behind academically, performing poorly on standardized testing, repeating grade levels, and requiring special education services compared to their term peers.42–44 While Spanish-speaking families in our study were less likely to report that their child receives special education services, it is unclear whether this represents a true difference in services received or differences in parental understanding of services available within school systems. The literature suggests the later: Spanish-speaking families tend to have overall lower rates of direct engagement with the school system compared to English-speaking families, due in part to feeling intimidated and having different cultural values that create a sense of deference to professionals.45 Although Spanish-speaking families tend to have less formal contact with the school system, children in these families often benefit from dynamic home-based educational and engagement practices, which are not captured by traditional parent participation metrics but have been shown to improve academic achievement, particularly in early education.45,46
This study presents multiple opportunities for further investigation of interactions and barriers Spanish-speaking caregivers with premature children face within both the medical system and the school system. Initial next steps include qualitative interviewing to help better identify the major barriers Spanish-speaking families face while accessing health care in the NICU and after discharge. High-risk infant follow up clinics are designed to address complex medical needs and developmental concerns, and families who speak languages other than English are less likely to follow up in these clinics;47 mitigating barriers to follow up in these clinics may be an additional way to ensure more equitable care for this specific patient population. Additionally, this study suggests a potentially important interplay between parental concerns about development and the school system that warrants further investigation as a potential safety net for families that face difficulties accessing equitable medical care.
Limitations
There are several limitations to this study, primarily related to the study design. As with all survey data, the NSCH is subject to recall and reporting bias, as answers are from parental self-reporting of multiple outcomes. Additionally, the dichotomous, close-ended nature of the survey questions makes it difficult to ascertain non-dichotomous outcomes and exposures; this is particularly pertinent to language exposures, as there is no way to capture children in bilingual families. Cultural groups have different overall perceptions and knowledge regarding normal and abnormal development,48 and these are not captured in the NCHS. These limitations must be considered when interpreting our results. In addition, assessing developmental outcomes can also be challenging utilizing the NSCH data. While prior literature suggests certain parental concerns correspond to moderate-to-high risk of true developmental delay,30 not all of the possible markers for developmental delay are included on the 2016–2018 NSCH. For example, one of the criteria, which addresses access to interpreter services during provider interactions, is not included in the 2016–2018 NSCH.