One significant health problem that exists within the American Indian population is Fetal Alcohol Syndrome. A 2001 report by Center for Disease Control and Prevention found the rate of FAS within various American Indian communities to be 1.5-2.5 per 1000 live births. That rate is significantly higher than the 0.2-1.0 per 1000 live births of the rest of the United States’ population (May & Gossage, 2001). Alcohol use by American Indian women is so prevalent that they are the only ethnic group in which chronic liver disease is one of the ten leading causes of death (Palacios & Portillo, 2009).
According to multiple studies, FAS is the most common cause of mental retardation that is completely preventable (May & Moran, 1995; Ma, Toubbeh, Cline, & Chisholm, 1998; Kvigne et al, 2008). When alcohol is consumed during pregnancy it acts as a teratogen, a substance that interferes with growth and development, and is capable of causing birth defects. The alcohol from the mother’s bloodstream easily crosses the placenta and into the fetal bloodstream. The fetus has a lower capability to metabolize the alcohol and thus it remains in the fetus’ system for a greater period of time (Siegler, Deloache, & Eisenberg, 2003). FAS is diagnosed if three necessary criteria are met: positive facial dysmorphic characteristics, neurodevelopmental dysfunction, and growth retardation (Kenner & D’Apolito, 1997; O’Leary, 2004).
Native American mothers are vulnerable to giving birth to children with FAS because of several social, economic, and health disparities. More than one quarter of all American Indians live in poverty, which is more than double than that of the U.S. population (U.S. Census Bureau, 2007). This socioeconomic condition undoubtedly affects the ability of Native American mothers to seek appointments for the wellness of their unborn child. Another inequality lies in the realm of education. Fewer American Indians (71%) obtain a high school diploma or GED than all other Americans (80%). The same trend can be applied to bachelor degrees with 11.5% versus 24.4% completion (U.S. Census Bureau, 2007). Lower levels of education may contribute to a lesser understanding of the damage alcohol does to the fetus. In addition, American Indian women have high rates of alcohol dependence. Data samples from two tribes, one from the Northern Plains and another from the Southwest, found alcohol dependence rates among the women to be 20.7% and 8.7% respectively (Beals, Novins, & Whitesell, 2005).
Nurses can significantly make an impact on reducing the number of American Indian children with Fetal Alcohol Syndrome. To begin, nurses can educate pregnant mothers about the problems associated with alcohol use during pregnancy. Also, nurses can advise at risk mothers to completely avoid all situations in which alcohol will be present (Monsen, 2009). By completely avoiding alcohol, the pregnant mother does not have to confront the temptation to indulge. Nurses also have the ability to refer pregnant women who have alcohol addictions to professional counselors. These experts have a better understanding about alcohol abuse and dependence. Furthermore, perinatal nurses can advocate for alcohol screenings and provide necessary interventions for at risk women (Keough & Jennrich, 2009). The purpose of this project is to investigate existing literature on the prevalence of fetal alcohol syndrome within the American Indian population in an attempt to understand the social, economic, ethical, and legal causes and consequences of drinking among pregnant women in this group.
A multitude of demographic challenges contribute to alcohol use by pregnant American Indian women. According to the Indian Health Service (2002), of all the U.S. minority groups, Native American women who live on or near a reservation are least likely graduate high school or attend college. Sarche and Spicer (2008) note other educational discrepancies also exist, including higher dropout rates and retention. These educational disparities leave many American Indian women knowledge deficient of the consequences associated with alcohol consumption during pregnancy.
The knowledge deficit of American Indian women does not begin in adulthood, but rather stems from a lack of awareness at a much younger age. As Fetal Alcohol Syndrome rates are incredibly high among many Native American communities, it is important that familiarity of the disorder is achieved early. Xueqin, Toubbeh, Cline, and Chisholm (1998) and Ma et al. (1998) studied the familiarity and attitudes of sixth, seventh, and eighth grade students towards alcohol and Fetal Alcohol Syndrome. Ma et al. (1998) published more of a quantitative survey of the subject’s knowledge and views towards alcohol and FAS. The data gathered acknowledged that although the subjects were sexually active, there was a clear knowledge deficit of the relationship between alcohol and FAS (Ma et al., 1998). When the subjects from Xueqin et. al. (1998) were asked about the negative effects of alcohol, no responses were made about alcohol’s effects on the body and fetus during pregnancy. In the same study, 97% of the subjects were unaware of the causes or effects of Fetal Alcohol Syndrome. Contrary to the study published by Xueqin et al. (1998), over half of the respondents (56.5%) in the study by Ma et al. (1998) knew what Fetal Alcohol Syndrome was. That difference could be caused by many variations, including geographic location, socioeconomic status, or familial involvement.
Ma et al. (1998) and Xueqin et al. (1998) also reported the rampant use of alcohol in the community as a gateway to adolescent use. Some American Indian women may begin to drink because they see family members drinking socially (Xueqin et al., 1998). Spillane and Smith (2007) make mention of this notion, claiming that modeling has a significant impact on American Indian youths. As high levels of American Indian drinking become established, the modeling cycle then becomes increasingly difficult to break.
Another factor that can contribute to alcohol use among pregnant American Indian women is violence. This group has the highest per capita violence rate among people between the ages of 18 and 24 (Kvigne et al., 2008). Sarche and Spicer (2008) also note that American Indian women are more likely to report domestic violence than any other ethnic group. Kvigne et al. (2008) published a study documenting the alcohol use, injuries, and prenatal visits of American Indian women in three successive pregnancies. When compared to the control mothers, women who gave birth to children with Fetal Alcohol Syndrome experienced more unintentional and intentional injuries during pregnancy (Kvigne et. al., 2008). From these findings, Kvigne et al. (2008) claim that American Indian mothers who gave birth to children with FAS may have used alcohol to cope with injuries sustained during pregnancy. Although the study correlates violence with alcohol use during pregnancy it does maintain one drawback, as the researchers were limited to using medical records to obtain their data. If the researchers had been able to speak with the mothers, a much more concrete relationship between alcohol use and violence during pregnancy could have been established.
According to recent studies (Finfgeld, 2002; Spillane & Smith, 2007) economic factors may or may not contribute to maternal alcohol use during pregnancy. Sarche and Spicer (2008) report that American Indians have a lower rate of employment than the general population, with rates ranging from 14% to 35% on some reservations. However, in some rural communities, areas in which reservation dwelling American Indians reside, many seasonal jobs are available (Finfgeld, 2002). Finfgeld (2002) describes how the seasonal work pattern may in fact cause problems for American Indian women. The author explains that the availability of sporadic work may actually perpetuate the binge-abstinence cycles that are very common among American Indian women. This notion is especially disturbing when related to pregnant Native American women as binge drinking can do significant damage to the unborn fetus. Spillane & Smith (2007) argue that although socioeconomic status may play a role in substance abuse among American Indians the degree to which it does is insignificant. The authors claim that the poverty level of American Indians does not impact their alcohol use. However, the authors do concede that socioeconomic status may not appear to be a contributing factor to alcohol abuse due to the fact that there is little variance in socioeconomic status among American Indians.
In addition, economic factors have proven to be a hindrance in obtaining substance abuse treatment and prenatal care for American Indian women. Long and Curry (1998) explain how prenatal care changed from traditional tribal ways to Westernized care during the Termination Era of the 1950s. It was during that time that American Indians were forced to assimilate into American society. The authors obtained their data by interviewing 52 American Indian women ranging in age from 18 to 80. The factors that currently influence American Indian women’s views of prenatal care include the breakdown of traditional cultural beliefs, substance abuse, and domestic violence (Long & Curry, 1998). Long and Curry (1998), as well as Moulton, Miller, Offutt, and Gibbens (2007) report that transportation problems impede the ability of American Indian women to obtain prenatal and substance abuse care. Long and Curry (1998) continue, explaining that traveling long distances and harsh weather exacerbate their already unreliable transportation methods. The study by Long and Curry (1998) could be significantly strengthened by increasing the survey size and diversifying the American Indian women surveyed. By interviewing a greater diversity of American Indian women (different tribes, geographic locations), the researchers could better understand the needs of each group of women.
Access to substance abuse treatment is also difficult for American Indian women who reside in rural areas. To begin, rural residents are less likely to have private medical insurance than people who reside in urban areas (Finfgeld, 2002). This notion results in many women relying on Medicare or Medicaid, programs which may limit access to substance abuse treatment in rural areas (Finfgeld, 2002). For some women, a program that is covered by insurance may be several miles away. In turn, both unreliable private transportation and a lack of public transportation thwart American Indian women in their attempt to receive substance abuse treatment (Finfgeld, 2002). These economic deterrents inhibit substance abuse and perinatal treatment and place the unborn fetus at risk for FAS.
Although ethical issues may not be directly responsible for the consumption of alcohol among pregnant American Indians, they may, however, play an important role in the treatment of substance abuse. For example, Alcoholics Anonymous, a program that contains many Christian overtones, may clash with many of the traditional Native American beliefs (Finfgeld, 2002). Also, many forms of psychotherapy may not be acceptable to American Indian women because those sessions require a great amount of self-disclosure (Finfgeld, 2002). From this, one can infer that treating substance abuse in this population requires a great deal of cultural competence.
Roberts, Johnson, Brems and Werner (2007) published a report pertaining to whether healthcare providers felt that they had a more difficult time caring for American Indians than for the general population. This study stemmed from previous evidence that ethnic minorities receive a lesser degree of care due to low levels of cultural competence among healthcare providers (Burgess, Fu, & van Ryn, 2004). Over 1500 multidisciplinary providers were surveyed across rural and non-rural areas in New Mexico and Alaska. The providers claimed that they had more difficulties with minority clients in the areas of treatment adherence, therapeutic alliance, informed consent, and confidentiality. What is specifically distressing is the notion that the providers find it difficult for their clients to maintain adherence to treatment. For pregnant American Indian women, not adhering to substance abuse treatment can lead to Fetal Alcohol Syndrome. Non-adherence then becomes an even greater ethical issue due to the fact that not only is the health of the mother in danger, but also the health of the unborn child who is not able to make decisions.
Kenner and D’Apolito (1997), O’Leary (2004) and Cappiello and Gahagan (2009) highlight many of the issues that a child born with FAS will face throughout his or her lifetime. Although many of the characteristic dysmorphic qualities are not seen right after birth, traits such as low birth weight, microcephaly and difficulty feeding are evident very early in the affected child’s life (Kenner & D’Apolito, 1997). A diagnosis of FAS is not usually made on infants before two years of age, as central nervous dysfunction and facial morphology may prove difficult to evaluate at that time. As the child ages, facial features such as short palpebral fissures, an indistinct philtrum, and a thin upper lip may become more prominent (O’Leary, 2004). These children may also be more likely to suffer from congenital heart defects, renal defects, and strabismus (Cappiello & Gahagan, 2009). By the age of one year, both fine and gross motor abnormalities may become evident, which can lead to impaired balance and gait (O’Leary, 2004). Children suffering from Fetal Alcohol Syndrome may present with structural defects of the ear that can lead to chronic otitis media and over time hearing loss (Kenner & D’Apolito, 1997; O’Leary, 2004). Communication difficulties also persist, rendering social interaction and development difficult (O’Leary, 2004). As the child ages, behavioral issues, central nervous system dysfunctions, and safety become the main issues. School-age children suffering from FAS are inclined to be impulsive and intrusive, lack social judgment, and demand attention (O’Leary, 2004). Thus, these children may present with many signs of attention deficit hyperactive disorder and researchers are currently looking for a link between the two (Kenner & D’Apolito, 1997; O’Leary, 2004). Overall, because of the mother’s decision to consume alcohol during pregnancy, the affected child will be severely limited academically and may find it nearly impossible to thrive in society.
Kenner and D’Apolito (1997) identify a strong point in that the severity of the disorder is individualistic and depends on many other factors including home environment and support services. This notion is especially relevant when relating it with American Indians as many children affected by FAS in that group will be surrounded by substance abuse throughout their lives. Many adolescent children afflicted with FAS also fail to see the consequences of their actions, thus making safety an immense concern. Sarche and Spicer (2008) report that American Indian children are more likely to be killed in a motor vehicle accident, to be hit by a car, commit suicide, or drown than either African Americans or Caucasians. All of those traumatic events can relate to impaired judgment, impulsivity, and lower inhibitions caused by Fetal Alcohol Syndrome.
Political and Legal Factors
In any healthcare situation, confidentiality is a major legal issue. Failure to follow legal guidelines can lead to lawsuits and even license suspension or termination. For American Indian women seeking alcohol abuse treatment, confidentiality assurance is a major concern (Finfgeld, 2002; Roberts et al, 2007). American Indian women who seek treatment for alcohol use do not wish to be stigmatized by the community and are legally entitled to confidentiality. Environmental factors also play a role in deterring confidentiality assurance for American Indian women (Finfgeld, 2002). This notion stems from the idea that rural residents are offered less privacy than their urban counterparts (Finfgeld, 2002). For these legal reasons, American Indian women may find it difficult to anonymously pursue alcohol abuse treatment.
In recent years, much debate has arisen about the criminality of substance abuse during pregnancy. Although considered socially immoral, the Supreme Court of the United States has stated that substance abuse addiction is an illness and that criminalizing it violates the Eighth Amendment right of protection against cruel and unusual punishment (Harris & Paltrow, 2003). If ever deemed a punishable offense, alcohol abuse during pregnancy could become a very important issue among American Indian women. Harris and Paltrow (2003) discuss the legality of criminalizing substance abuse during pregnancy, as well as whether uniformed drug testing during pregnancy for the purpose of prosecution is constitutional. Paone and Alperen (1998) argue that efforts to criminalize a woman for substance abuse during pregnancy do not serve to protect the children, but rather act as a means to punish mothers for their morally wrong social behavior.
In 2001, the case of Ferguson v City of Charleston debated the constitutionality of substance abuse screening during pregnancy without explicit consent (Harris & Paltrow, 2003). The verdict of the Supreme Court was that screening a woman without her consent was a violation of her Fourth Amendment rights that protect her from unreasonable or warrantless seizures (Harris & Paltrow, 2003). Women who abuse alcohol during pregnancy can possibly be prosecuted with charges ranging from child abuse or neglect, contributing to the delinquency of a minor, and child endangerment (Paone & Alperen, 1998; Harris & Paltrow, 2003). However, no state has adopted laws that create unique penalties for pregnant women who consume teratogenic substances during pregnancy (Harris & Paltrow, 2003). However, South Carolina law views viable fetuses as a child and thus considers any positive toxicology screen during pregnancy to be child endangerment or abuse and the child is removed from the mother’s custody (Harris & Paltrow, 2003).
It can be ascertained from reading the two articles that the authors prefer substance abuse treatment and support options for the mothers as opposed to punitive measures. Paone and Alperen (1998) suggest substance abuse funding for pregnant women be increased and that appropriate and effective forms of counseling be enacted. Harris and Paltrow (2003) conclude that healthcare workers should serve the needs of their clients and should not act as an arm of the judicial system.
It can be concluded that Fetal Alcohol Syndrome, although completely preventable, is a cause for concern in the American Indian population. American Indian women face several social disparities, many in which place them at a high risk to deliver a child with Fetal Alcohol Syndrome. Also, an evident knowledge deficit of the causes and effects of FAS is discernable from a young age and clearly continues into adulthood. Increased rates of domestic violence place pregnant American Indian women at risk for consuming alcohol during pregnancy as a means to cope with their anxiety. In addition, economic hardships encourage binge-abstinence cycles of alcohol use because of intermittent work. The problem does not end there, however, as the transportation difficulties and insurance issues faced by many American Indian women make obtaining substance abuse treatment and perinatal care very difficult. The inability of American Indian care providers to facilitate a therapeutic relationship may contribute to a lack of substance abuse adherence. Consequently, American Indian women who abuse alcohol are then at risk for directly causing fetal damage and possibly delivering a child born with Fetal Alcohol Syndrome. Finally, prosecutors of some U.S. states are pursuing criminal action against women who knowingly endanger their unborn child by abusing alcohol. Although South Carolina is currently the only state that views an unborn fetus as a child thus allowing for child abuse charges, it is not unrealistic to see other states criminalize substance abuse during pregnancy.
Beals, J.D., Novins, D.K., & Whitesell, N.R. (2005). Prevalence of mental disorders and
utilization of mental health services in two American Indian reservation
populations: Mental health disparities in a national context. American Journal
of Psychiatry, 162(9), 1723-1732.
Burgess, D.J., Fu, S.S., & van Ryn, M. (2004). Why do providers contribute to
disparities and what can be done about it. Journal of General Internal
Medicine, 19(11), 1154-1159.
Cappiello, M.M., & Gahagan, S. (2009). Early child development and developmental delay in
indigenous communities. Pediatric Clinics of North America, 56(6), 1501-1517.
Centers for Disease Control and Prevention. (2001). Fetal alcohol syndrome –
Alaska, Arizona, Colorado, and New York – 1995-1997. Morbidity and
Mortality Weekly Report, 51(20), 433-435.
Finfgeld, D.L. (2002). Alcohol treatment for women in rural areas. Journal of the
American Psychiatric Nurses Association, 8(2), 37-43.
Harris, L.H., & Paltrow, L. (2003). The status of pregnant women and fetuses in U.S. criminal
law. The Journal of the American Medical Association, 289(13), 1697-1699.
Indian Health Service. (2002). Income status in 1989, American Indians and all U.S.
races, 1990 census. Washington, DC: U.S. Department of Health and Human
Keltner, B., Kelley, F.J. & Smith, D. (2004). Leadership to reduce health disparities: A
model for nursing leadership in American Indian communities. Nursing
Administration Quarterly, 28(3), 181-190.
Kenner, C., & D’Apolito, K. (1997). Outcomes for children exposed to drugs in utero. Journal of
Obstetric, Gynecologic & Neonatal Nursing, 26(5), 595-603.
Keough, V.A., & Jennrich, J.A. (2009). Including a screening and brief alcohol
intervention program in the care of the obstetric patient. Journal of Obstetric,
Gynecologic & Neonatal Nursing, 38(6), 715-722.
Kvigne, K.L., Leonardson, G. R., Borzelleca, J., Brocke, E., Neff-Smith, M., & Welty,
T.K. (2008). Alcohol use, injuries, and prenatal visits during three successive
pregnancies among American Indian women on the Northern Plains who
have children with Fetal Alcohol Syndrome or incomplete Fetal Alcohol
Syndrome. Maternal and Child Health Journal, 12(1), 37-45.
Long, C.R., & Curry, M.A. (1998). Living in two worlds: Native American women and prenatal care.
Health Care for Women International, 19(3), 205-215.
Ma, G. X., Toubbeh, J., Cline, J., & Chisholm, A. (1998). Native American adolescents’
views of Fetal Alcohol Syndrome prevention in schools. Journal of School
Health, 68(4), 131-136
May, P.A. & Gossage, J.P. (2001). Estimating the prevalence of fetal alcohol
syndrome: A summary. Alcohol Research and Health, 25(3), 159-167.
May, P.A. & Moran, J.R. (1995) Prevention of alcohol misuse: A review of health
Promotion efforts among American Indians. American Journal of Health
Promotion, 9(4), 288-299.
Monsen, R.B. (2009). Prevention is best for fetal alcohol syndrome. Journal of
Pediatric Nursing, 24(1), 60-61.
Moulton, P.L., Miller, M.E., Offutt, S.M., & Gibbens, B.P. (2007). Identifying rural health needs
using community conversations. The Journal of Rural Health, 23(1), 92-96.
O’Leary, C.M. (2004). Fetal alcohol syndrome: Diagnosis, epidemiology, and developmental
outcomes. Journal of Paediatrics and Child Health, 40(1-2), 2-7.
Palacios, J.F., & Portillo, C.J. (2009). Understanding native women’s health. Journal of
Transcultural Nursing, 20(1), 15-27.
Paone, D., & Alperen, J. (1998). Pregnancy policing: Policy of harm. International Journal of
Drug Policy, 9(2), 101-108.
Roberts, L.W., Johnson, M.E., Brems, C., & Warner, T.D. (2007). Ethical disparities: Challenges
encountered by multidisciplinary providers in fulfilling ethical standards in the care of
rural and minority people. The Journal of Rural Health, 23(1), 89-97.
Sarche, M., & Spicer, D. (2008). Poverty and health disparities for American Indian
and Alaska Native children. Annals of the New York Academy of Sciences,
Siegler, R., DeLoache, J., & Eisenberg, N. (2003). How Children Develop. New York,
New York: Worth Publishers
Spillane, N.S., & Smith, G.T. (2007). A theory of reservation-dwelling American Indian
alcohol use risk. Psychological Bulletin, 133(3), 395-418.
Xuequin, G., Toubbeh, J., Cline, J., & Chisholm, A. (1998). The use of a qualitative
approach in Fetal Alcohol Syndrome prevention among American Indian
youth. Journal of Alcohol & Drug Education, 43(3), 53-65.
United States Census Bureau. (2007). We the people: American Indians and Alaskan Natives in
the United States. Retrieved from: http://www.census.gov/population/www/socdemo/race/censr-28.pdf.