Spina bifida occurs when the neural tube fails to close during early fetal development, resulting in a range of neural tube defects (NTDs). The cause of spina bifida is not fully understood, but scientists believe that NTDs are the result of genetic and environmental factors acting simultaneously. The Centers for Disease Control reports that spina bifida and other NTDs occur more frequently in some ethnic groups, such as Hispanic people, than in others. The United States is increasingly multicultural and diverse, and it is becoming more difficult to categorize individuals into a single racial/ethnic group. This article uses the term ethnicity as defined by the Institute of Medicine and avoids using race unless part of a particular study.
Spina bifida occurs when the neural tube fails to close during early fetal development. This failure results in a vast array of potential impairments. Malformations such as these are called neural tube defects (NTDs), which are structural abnormalities of the brain and vertebral column. According to the Centers for Disease Control and Prevention (CDC) National Center on Birth Defects and Developmental Disabilities, each year in the United States approximately 3000 infants are born with spina bifida or other NTDs. The Spina Bifida Association estimates that 70,000 people in the United States are currently living with spina bifida; however, spina bifida is considered underreported on birth certificates according to birth certificate data from the National Vital Statistics System, a part of the CDC National Center for Health Statistics, so this estimate is believed to be considerably low.
Although the causes of spina bifida are not fully understood, scientists believe that both genetic and environmental factors act simultaneously to cause this and other NTDs. However, 95% of babies with spina bifida and other NTDs are born to parents with no family history of such conditions. The CDC reports that spina bifida and other NTDs occur more frequently in some ethnic groups than others. For example, NTDs are more common in Hispanics than in individuals of other ethnicities.
Individuals with spina bifida live with a range of disabilities depending on the level of their lesion. Common conditions that affect those with spina bifida are sensory and motor impairment, bowel and bladder incontinence, hydrocephalus, learning and developmental delays, and orthopedic problems. Persons with spina bifida often undergo numerous surgeries, and experience multiple providers and interventions. Research has shown that individuals living with spina bifida can thrive with the help of a multidisciplinary team of specialists that can manage and tend to their individual needs.
Ethnic minorities make up a large portion of the population of individuals with spina bifida, and cultural beliefs may affect the use of health care and influence behavior in relation to modifying risk factors for spina bifida. In considering culture, ethnicity, and spina bifida, this article (1) reviews the literature that addresses the prevalence of spina bifida related to different ethnic groups, (2) identifies factors that intersect with prevalence, and (3) discusses implications for clinical practice. Because “… culture and language may affect health, healing and wellness belief systems; how illness, disease, and their causes are perceived; the behaviors of individuals seeking health care; and the delivery of health care services and provider behavior”, consideration of culture becomes a critical component of the care of individuals with spina bifida and their families.
The Institute of Medicine’s (IOM) report on health disparities, Unequal Treatment, defines culture as “the accumulated store of shared values, ideas (attitudes, beliefs, values, and norms), understandings, symbols, material products and practices of a group of people” (p523) . Ethnicity refers to a “shared culture and way of life, especially as reflected in language, folkways, religious and other institutional forms, material culture such as clothing and food, and cultural products such as music, literature, and art” (p523) . Race connotes “a concept wherein groups of people sharing certain physical characteristics are treated differently based on stereotypical thinking, discriminatory institutions and social structures, a shared worldview, and social myths” (p525) . There is no scientific evidence for a category such as race based on physical characteristics or genetics. The American Anthropological Association (AAA), in comments to the Interagency Committee to the Census Bureau, recommends that race and ethnicity be combined into a category race/ethnicity. For future consideration, they recommend that race be eliminated from government documents. Further, the AAA delineates ethnicity or ethnic group as social categories more important for scientific purposes.
The United States is increasingly multicultural and diverse. As a result, it is becoming more difficult to categorize individuals into a single racial/ethnic group. Federal census categories have changed over the years, and other federal agencies, such as the CDC and National Institutes for Health, as well as business and industry, change their practices to use updated categories. Since 2000, residents of the United States have been allowed to indicate more than 1 race/ethnicity on the census. As a result, health care research often uses the concepts of culture, ethnicity, and race in confounding and opposing ways, which adds confusion when investigating trends across various studies as well as over time. In an attempt to provide some clarity and consistency, this article primarily uses the term ethnicity as defined by the IOM and avoids using race unless part of a particular study.
The intersections of race, ethnicity, and culture on spina bifida
Prevalence Data
The prevalence of spina bifida for the latest available reporting period (2003–2005) using data from national samples of birth certificates is 1.90 per 10,000 live births; 2.0 per 10,000 live births among infants with non-Hispanic white mothers, 1.96 among infants with Hispanic mothers, and 1.74 among infants with non-Hispanic black mothers. In this report, the prevalence of spina bifida was similar for infants born to Hispanic and non-Hispanic white mothers, contrary to findings identified by others that demonstrated a higher prevalence among Hispanic women than women in other racial/ethnic groups both before and after folic acid fortification. Previous research found notable differences in prevalence rates of NTDs, including spina bifida, across different ethnic/racial groups. Specifically, prevalence has been shown to be approximately 50% to 100% higher among Hispanic women compared with non-Hispanic white women, and women of African American and Asian descent seem to have the lowest prevalence of spina bifida. The overrepresentation of NTDs generally, and spina bifida specifically, among Hispanic populations in the United States has been stable.
Prevention and Folic Acid
Given differential prevalence rates, research on cultural, ethnic, and racial issues in spina bifida and NTDs has focused almost exclusively on individuals of Hispanic descent. This article reviews current literature on changing patterns of birth rates, and demographic, cultural, and acculturation factors that affect the expression of spina bifida.
Since the mid to late 1990s, a dramatic and notable decrease in the rate of NTDs has been observed in the United States. This change has been accounted for almost exclusively by changes in access to dietary and supplemental folic acid. In 1992, the US Public Health Service recommended that all women of childbearing age consume 400 μg of folic acid daily to help prevent NTDs, estimating that 50% to 70% of NTDs could be prevented through daily consumption of this amount of folic acid. In 1996, the US Food and Drug Administration mandated the addition of folic acid to all enriched cereal grain products by January of 1998. The timing and implementation of mandated fortification created opportunities to investigate the prevalence of spina bifida and other NTDs before and after mandated fortification.
Multiple studies show that fortification dramatically reduced the prevalence of NTDs. Although folic acid fortification clearly results in decreased NTDs, reductions in births following mandatory fortification do not seem comparable across ethnic groups. Williams and colleagues examined the decline in the prevalence of spina bifida during the transition to mandatory folic acid fortification in the United States from 1995 to 2002. They found that the prevalence of spina bifida per 10,000 live births was highest among Hispanic births at all 3 time points (January 1995–December 1996, 6.49; January 1997–September 1998, 5.52; October 1998–December 2002, 4.18), followed by non-Hispanic white births (1995–1996, 5.13; 1998–1998, 4.37; 1998–2002, 3.37), with the lowest prevalence among non-Hispanic black births (1995–1996, 3.57; 1997–1998, 2.53; 1998–2002, 2.90). Folic acid fortification was also associated with a significant decrease in the prevalence of spina bifida in non-Hispanic white and Hispanic births. However, the magnitude of reduction in NTD births was markedly lower among African Americans, and the change was not statistically significant. Reasons for these differences across African American and other groups are not fully understood; the lower basal rate of NTDs in African Americans may account for this finding.
Although existing research shows that folic acid supplementation reduces rates of NTDs among Hispanic people comparable with reductions observed in non-Hispanic white people, rates remain notably higher among Hispanic people even after fortification. Given this, attempts have been made to elucidate the factors that account for discrepancies across ethnic groups. Some research suggests that differences in folic acid consumption patterns account for continued high rates of NTDs among Hispanic people. Hispanic women may be less likely to use folic acid supplements, and Spanish-speaking women may be less likely to take preconception multivitamins compared with English-speaking women. Hispanic women living along the Mexican-American border have been shown to have low rates of folic acid supplementation, with the primary source from vitamins ; supplementation via vitamins may not be as effective as dietary folic acid because less of the folate is bioavailable. Hispanic women have also been shown to be less likely to consume breakfast cereals, which are high in fortified folic acid.
Several lines of evidence suggest that differences in folic acid consumption do not account for differences in NTD rates. African American women have been shown to consume even less folic acid through supplements and dietary intake than Hispanic women. Similar serum folate levels have been found among Hispanic and African American women before and after fortification became mandatory.
Harris and Shaw suggested that factors such as ethnic/racial differences in sensitivity to folate, genetic factors, or other unknown factors may account for observed differences. Ethnic differences exist in methylenetetrahydrofolate reductase gene polymorphisms, which regulate folate distributions. Specifically, 1 of 2 polymorphisms of the methylenetetrahydrofolate reductase gene (C677T), which may be associated with increased risk of NTDs, was highest in Hispanic women and lowest in African American women.
Maternal weight status has also been shown to affect risk for having a child with an NTD. Specifically, women who are obese seem to have almost twice the risk, even after controlling for race. This is relevant because some research suggests that Hispanic women may have higher visceral adipose tissue and total fat percentage for body mass index than African American and white women. Thus, although prevalence of prepregnancy obesity has been shown to be higher in African American women compared with white and Hispanic women, the type and percentage of fat tissue is greater for Hispanic women, which may help explain the increased prevalence of NTDs among children of Hispanic descent. Poor weight gain or weight loss early in pregnancy has been associated with increased risk of NTDs, although this seems to be independent of race/ethnicity.
Acculturation and other demographic variables that may affect rates of NTDs among Hispanic mothers have been more thoroughly studied. Several investigations have been conducted to determine whether foreign-born versus United States–born Hispanic women experience different rates of NTDs. Using data gathered from 1997 to 2003 via the National Birth Defects Prevention Study, Ramadhani and colleagues showed that Hispanic mothers born in Mexico/Central America were 50% more likely to have births of spina bifida than their United States–born counterparts. They also noted that there were no differences in rates of folic acid use between United States–born. and foreign-born mothers, providing further evidence that folic acid may not be the most critical variable explaining higher rates of NTDs among Hispanic women. Canfield and colleagues also found an association between birth status of mothers and risk of NTD in offspring. Specifically, they noted that the greatest risk for birth of a child affected by spina bifida occurred among foreign-born Hispanic women in the United States for less than 5 years. They found no increased risk for having a birth with spina bifida or anencephaly for United States–born Hispanic women compared with white women. Similar findings were noted by Velie and colleagues, who showed a twofold increased risk for spina bifida among women born in Mexico but in the United States for less than 2 years, as well as relative risk among second- and third-generation women of Mexican heritage similar to that of non-Hispanic white women.
Research on the association between acculturation variables and risk of having a child with an NTD has not been consistent. For instance, Ramadhani and colleagues found that foreign-born Hispanic women who had been in the United States for longer than 5 years had a higher risk of spina bifida birth than their counterparts who were foreign-born but had been in the United States for less than 5 years. Carmichael and colleagues showed that Hispanic women born in the United States who preferred to speak Spanish, used as a marker of acculturation, had lower risk of spina bifida birth than foreign-born Hispanic women regardless of language preference, United States–born Hispanic women who preferred English, and white women.
Socioeconomic variables also seem to be associated with relative risk of having a child with an NTD. Mothers with the highest income, regardless of ethnic status, may be markedly less likely to have a child with spina bifida. Canfield and colleagues showed that highly educated Hispanic and white women had a 76% and 35% lower risk of have spina bifida offspring, respectively. Demographic, socioeconomic, and educational status also seem to intersect with folic acid supplementation in a way that is relevant for understanding discrepancies in births affected by spina bifida across ethnic groups. Specifically, younger women, those with less formal education, and those with lower annual household income are also less likely to take folic acid supplements daily. This is important given evidence that recent immigrants to the United States are more likely to be young, less educated, and have lower incomes. Research shows that folic acid supplementation rates have decreased over time for women who are Hispanic and of lower education.
Cultural Factors That May Affect Care
In addition to differential prevalence rates and factors associated with biomedical and demographic risks for spina bifida, a variety of other cultural influences affect the care of children and adults with spina bifida and their families. These influences include religion, the nature of relationships with providers, language differences, health literacy, and expectations regarding goals for independence.
Religion
Religion often plays a significant role in people’s lives, especially as they cope with their own or family members’ chronic condition. Johnstone and colleagues identified that both religion and spirituality are important coping strategies for those with disabilities, and, in a study of quality of life for families of children with disabilities, Poston and Turnbull found that families identified the importance of spirituality in their lives. In a study by Treloar, individuals with disabilities and their family members described how they used their spiritual beliefs to establish meaning for disability and to respond to associated challenges, and found that participants’ spiritual beliefs stabilized their lives, provided meaning for the experience of disability, and assisted with coping. In research into the association of religious and spiritual coping with well-being in Latin American people caring for older relatives with disabilities, Herrera and colleagues found that intrinsic and organizational religiosity was associated with lower perceived burden, whereas nonorganizational religiosity was associated with poorer mental health. Given the importance of religion, notably among the Hispanic/Latin American, and African American communities, careful attention to an individual’s or family’s connection with religious and/or spiritual beliefs and practices is important for understanding factors that may assist or hinder coping.
Relationships with providers
Latin American patients tend to view clinicians as important authority figures, expecting both an expert and a friend they can talk to, and the impersonal characteristics that may accompany the typical clinical encounter are not acceptable in the Latin American culture. Disparities in health outcomes among minority and racial groups are well documented and are at times attributable to breakdown in the quality of the clinician-patient relationship. Cooper and colleagues described several elements of the clinician-patient relationship that may be affected by race/ethnicity, including communication, partnership, respect, knowing, affiliation/liking, and trust. Race, ethnicity, and language substantially influence the quality of the doctor-patient relationship, and minority patients, especially non–English speakers, are less likely to engender an empathic response from providers and be encouraged to participate in decision making. Others have found that race-concordant visits (in which patient and provider are the same race) result in higher ratings of patient satisfaction than race-discordant visits, were longer, had a more positive patient affect, and improved continuity of care. The clinician-patient relationship is strengthened when patients see themselves as similar to their clinicians and this is associated with higher ratings of trust, satisfaction, and intention to adhere. These findings have significant implications for spina bifida programs in which large groups of minority patients may be seen, with care provided by nonminority, English-speaking providers. Because long-term adherence to medical procedures is required to promote health and minimize complications associated with spina bifida, the nature of the clinician-patient relationship may have a significant effect on outcomes and quality of life. To our knowledge, specific study of the clinician-patient relationship in spina bifida has not been conducted, and this area warrants future research.
Language differences
Although it may be helpful if health care providers share a common cultural and linguistic background with their patients, this is not always possible and, some argue, does not necessarily mean that culturally appropriate care is being provided. However, when the patient and health care provider speak different languages, the use of interpreters to facilitate communication is among the most basic of recommendations typically made. Research has shown that having interpreters facilitate communication with health care providers can increase willingness to seek health care, improve satisfaction with the services provided, increase treatment adherence, and improve health outcomes for non–English speakers. Although more costly, medical interpreters should be offered to the patient and family, rather than ad hoc interpreters (such as other hospital staff or family members). Although both trained medical interpreters and ad hoc interpreters make similar types of interpreting errors, the errors made by ad hoc interpreters can be significantly more likely to have possible clinical consequences than the errors made by trained interpreters. In addition, the use of children or adolescents as interpreters must be avoided, because it places such a heavy emotional burden on them and could also disrupt the parent-child relationship.
Even when the language barrier can be bridged with the assistance of an interpreter, cultural variations can still interfere with communication between a patient and the medical providers. Singleton and Krause provided several examples of how cultural expectations may interfere with effective communication, including a cultural tendency to avoid conflict causing patients to agree to participate in treatments that they do not agree with or understand; a cultural preference for obtaining information from a male provider, meaning that important information provided by a female clinician may be dismissed; and self-advocacy being frowned on in some cultures, so patients may not ask questions even when an interpreter is available.
Health literacy
In addition to the language spoken by the patient and the family, the level of literacy in English and the primary language must also be considered. Health education materials are often provided in a written format and may use sophisticated language that may be difficult to understand, or the materials may have been written in a manner that reflects American traditions and beliefs, without accounting for cultural differences, thus making the content less accessible for some cultural groups even when translated into different languages.
Health literacy must also be considered in the care of individuals with spina bifida and their families. Healthy People 2010 defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” As such, health literacy includes the ability to understand instructions on prescription drug bottles, appointment slips, health education materials, instructions, and consent forms, and the ability to negotiate complex health care systems. Being health literate requires a complex group of reading, listening, analytical, and decision-making skills, and the ability to apply these skills to health situations. According to the American Medical Association, poor health literacy is “a stronger predictor of a person’s health than age, income, employment status, education level, and race” and the IOM reports that 90 million people in the United States (nearly half the population) have difficulty understanding and using health information. Patients and family members are often provided with written instructions related to care for individuals with spina bifida. If not well written and geared toward the health literacy level of the target population, the material is not helpful, and may provide a false sense of security among caregivers that transmitted information is being understood.
Goals for independence
We have observed that cultural influences affect a family’s feelings about promoting independence in the child or youth with spina bifida, at times causing tension with providers seeking to support independence and self-care. Typical areas of dissension include self-catheterization, bowel management, independence in the community, planning for independent living and careers, and social and romantic relationships.
The issue of independence has not been well addressed in the literature, particularly as it relates to cultural differences. We were able to locate only 1 study in a search of MEDLINE and PsychINFO from 1995 to the present that addressed ethnicity and spina bifida (one of several health conditions studied) other than in relation to prevalence or prevention. Wolman and colleagues conducted a qualitative study of the wishes and expectations of 63 parents from diverse cultural backgrounds for their children (5–12 years of age) with chronic illnesses. The most common primary diagnoses of the 63 children included asthma, cerebral palsy, seizure disorder, diabetes mellitus, and spina bifida. Participants self-identified as African American, Hispanic, and European American. Using a content analysis approach, researchers learned that, regardless of ethnicity, the parents’ most frequently expressed wish was that their children’s condition be cured or improved. Next, parents wished for their children to be healthy and happy. Wishes related to independent living, financial independence, and the ability to drive a car were exclusively expressed by parents of children with mental retardation and mobility impairments. “Studying well, having a good education, and staying in school” and behavioral concerns such as “I hope she will stop being demanding” (p269) and “that he could get along with his brother harmoniously, just minor disagreements” (p270) were the wishes mentioned primarily by African American and Hispanic parents, regardless of condition. Many parents were not able to state expectations and were worried or fearful about the future.
Some specific cross-cultural/ethnic differences were observed in the Wolman and colleagues study. For instance, African American and Hispanic parents’ expectations differed notably from European American parents in concerns about social issues such as violence and risky behaviors. However, the investigators suggested that cultural/ethnic differences may not be the primary reason for such differences. Specifically, they note that, rather than being a unique effect of ethnicity, this difference could be interpreted as a combination of minority status, low income, and socioeconomic status. There was a significant difference in income between African American and Hispanic participants compared with European American participants. They suggested that wishes and expectations related to independent living were related to condition rather than ethnicity. However, more research needs to be conducted to understand whether differences in cultural practices (eg, tendency of children to remain in parental home until marriage) also relate to issues such as independent living more than socioeconomic or other related variables.
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