The crisis of minority health disparities affects even our nation’s youngest citizens. Infant mortality rates—i.e., the rate at which babies less than one year old fail to survive—clearly vary depending on race and ethnicity.
The statistics are tragic and eye-opening. The Centers for Disease Control and Prevention (CDC) reports that:
- In the year 2000, infant mortality among African Americans occurred at a rate of 14 deaths per 1,000 live births—more than twice the national average of 6.9 deaths per 1,000 live births for the U.S. population as a whole.
- The mortality rate among American Indian and Alaska Native babies was 9.1 deaths per 1,000 live births.
- African Americans have the highest infant mortality rates resulting from low birth weight, approximately four times that of infants born to non-Hispanic white mothers.
- Sudden Infant Death Syndrome (SIDS) rates for African American babies are 2.4 times those of white infants.
- SIDS deaths among American Indians and Alaska Natives occur at 2.6 times the rate for white babies.
“Infant mortality among minority populations is a complex issue,” says Nancy Powell, MSN, RN, CNM, a nurse-midwife who works for Shore Memorial Hospital in Somers Point, N.J. “There are a lot of factors that contribute to it and not all of them are medical. Many of them are social.”
These factors can include financial, educational and logistical barriers to prenatal, neonatal and post-natal care. “The most important thing we have to look at as nurses is how to address the lack of social support and the stress of this,” Powell adds, “because these contribute to pre-term delivery, which is a major factor in infant mortality.”
In addition to premature birth, the leading causes of infant death in the United States, according to the CDC, include congenital abnormalities, low birth weight, SIDS, problems related to complications of pregnancy and respiratory distress syndrome.
What specifically can minority nurses do to help close the infant mortality gap and give babies of color an equal chance for a long and healthy life? Here’s a look at three successful model programs in which nurse-led interventions are making a real difference.
Nurses for Newborns
Sharon Rohrbach, RN, is on the front lines when it comes to saving the lives of minority infants. She is the CEO and founder of the St. Louis-based Nurses for Newborns Foundation, a nurse home-visiting agency that focuses on providing at-risk pregnant women and their families with education, health care and positive parenting skills.
A not-for-profit agency founded in 1991, Nurses for Newborns uses a network of 49 experienced pediatric nurses who visit new moms in their homes. Seventeen of these nurses work full-time for the organization. The program serves 22 counties in St. Louis and another 24 in Nashville, Tennessee. The agency’s nurses, who must be RNs with at least five years neonatal intensive care experience, teach mothers how to have a healthy pregnancy, how to care for their infants and how to recognize the signs of illness in their babies.
Rohrbach, who is part Cherokee, had been actively involved in infant mortality prevention even before she established her foundation. In 1989, she started a similar program as a for-profit organization with Pat Paschia, RN (who also helped found Nurses for Newborns before leaving the foundation in 1992). Rohrbach decided to focus her efforts on this issue, she says, because she had seen too many infants die needlessly in the emergency room of the hospital where she had worked as an RN in the neonatal nursery.
“The infants were dying because their mothers could not tell a sick baby from a well baby until it was too late,” she explains. “The mother would have just met the baby so she wouldn’t know the difference if something was wrong, and hospitals were discharging newborns at only 24 to 48 hours of age. Most of the things that are going to be life-threatening for a baby are not going to show up until 72 hours.”
Rohrbach studied countries with lower infant mortality rates than the U. S. (which at the time had the 18th lowest infant death rates in the world but has now improved on that ranking). She found that less-developed countries ahead of America on the list kept their babies in the hospital longer and provided home nurse visits. “I knew I couldn’t do anything about the length of hospital stays with insurance companies controlling that,” she says. “But I thought I could probably do something about providing a nurse home visitor.”
In the fiscal year that ended in June 2005, Nurses for Newborns served approximately 3,000 families in the St. Louis area; approximately half of the families were racial and ethnic minorities. Many of the nurses are also people of color. “For our clients to have somebody who looks like them and talks like them . They respond quicker and they are more likely to be willing to build that relationship,” Rohrbach emphasizes. “I think it’s important for minority nurses [to be involved in efforts like this] because our project really lifts people. We try to lift them out of whatever crisis state they are in [that could affect their pregnancy or their infant’s health].”
Nurses for Newborns has four programs:
- Bright Futures focuses on outreach to pregnant women who are receiving no prenatal care. The goal of this complete perinatal program is to help women access prenatal care and have a healthy pregnancy, then learn infant care and build parenting skills after the baby’s birth.
- The Bridge to the Future program serves as a “bridge” between hospital and long- term community-based services for medically fragile infants. Services are based on individual family strengths and are designed by the family and the nurse.
- Safe Beginnings serves mentally ill, developmentally disabled and physically challenged pregnant women or new mothers. Goals include preventing premature birth, preventing child abuse and neglect, and promoting good parenting skills. The outreach continues until the participant enters a long-term care program.
- The Teen Parent program serves first-time mothers under age 19. Its goals include educating young mothers about infant safety hazards to prevent accidents. The program also teaches teen moms about infant immunizations, signs of physical illness in the baby and how to access health resources available in their community.
Rohrbach’s efforts have not gone unnoticed. She has received a Use Your Life Award from Oprah Winfrey’s Angel Network, a Women Who Inspire Us Award from Women’s Day magazine, and a Community Health Leadership Program award from the Robert Wood Johnson Foundation. But the accolades are not what’s important to Rohrbach. Saving the lives of at-risk infants is her mission.
“For nurses working in this field, it is extremely rewarding because they know the difference they make,” she says. “They can see it every day. They will meet a really high-risk baby who is losing weight every day and a hysterical mother who does not know how to take care of the baby. They see the baby over the course of two years. They are able to meet families in crisis and leave them two years later with a mother who has good parenting skills and a healthy, thriving baby. They see the results of their hard work. One nurse really can make a difference.”
A Healthy Start
Another city with a multifaceted program aimed at reducing the infant mortality rate in underserved, disadvantaged populations is Camden, N.J. This initiative, Camden Healthy Start (CHS), is under the direction of the Camden City Healthy Mothers, Healthy Babies (HMHB) Coalition. The coalition is a program of the Southern New Jersey Perinatal Cooperative, a state-licensed maternal and child health consortium of health care providers and consumers serving pregnant women, infants and children in the seven-county southern New Jersey region.
The city of Camden is among the poorest of its size in the nation, points out April Lyons, MSN, RN, director of Camden Healthy Start. Adverse maternal and child health outcomes there are disproportionately high compared to the state of New Jersey as a whole. “Racial and ethnic minorities comprise a significant proportion of Camden’s population: 56.4% are African American and 31% are Latino. In addition, there is an increasing number of undocumented Mexican immigrants,” says Lyons, who is African American. “These populations are at increased risk for poor health status.”
According to the New Jersey Department of Health and Senior Services, in 1996 the infant mortality rate for the state as a whole was 6.96 deaths per 1,000 live births. In Camden, however, the rate was 16.86 deaths, well over twice the statewide average. Other statistics from that year paint a similar picture:
- 13.3% of babies born in Camden had low birth weight, compared to 7.67% for the state of New Jersey overall.
- 81.5% of pregnant women in New Jersey started prenatal care in the first trimester, compared to only 60% in Camden.
- The teen birth rate for Camden was three times higher than the statewide rate.
Camden Healthy Start is funded through the U.S. Department of Health and Human Services (HHS)’s Health Resources and Services Administration (HRSA). In 1991 HRSA launched the national Healthy Start Initiative, funding 15 urban and rural sites in communities with infant mortality rates that were 1.5 to 2.5 times the national average. The program began with a five-year demonstration phase to identify and develop community-based approaches to reducing infant mortality. The objectives were to decrease infant deaths by 50% over that period and to improve the health and well-being of women, infants, children and their families.
HRSA funded an additional seven sites in 1994, with the goal of significantly reducing infant mortality through more limited interventions. In 1998, the Healthy Start program expanded even further, adding 75 more projects, including Camden Healthy Start. The Camden project is now in its eighth year and recently received funding for an additional four years.
“Clearly, there is significant need in Camden,” says Lyons. “And the Southern New Jersey Perinatal Cooperative is committed to improving maternal and child health outcomes not only for Camden but for New Jersey as well.”
An important part of improving birth outcomes in minority communities, she adds, is ensuring that high-risk women and children have access to needed services that help strengthen families. Creating systems changes to support healthy families is a key area of focus for CHS.
“Culturally appropriate services are the foundation of the core interventions of direct outreach, case management/care coordination and health education,” Lyons explains. “CHS utilizes case managers and health care advocates. The case managers conduct home visits and help link clients to appropriate services and care coordination. Clients remain in the program for two years to ensure optimal prenatal, postpartum and interconceptional care.”
Camden Healthy Start provides intervention services for mothers who had no prenatal care prior to delivery, for teenage girls who are at a high risk of becoming pregnant and for teen parents. In addition, it serves fathers, women who experience perinatal depression, substance-abusing women and their families, childbearing families who do not access health care services and undocumented immigrant families.
Healthy Start projects nationwide have made great strides in reducing infant mortality. Lyons points to the fact that the provisional national infant mortality rate for the year 2000 reached a historic low of 6.9 deaths per 1,000 live births. “This resulted primarily from a 4.1% decline in the mortality rate for black infants—from 14.6 to 14,” she notes. “However, that is still more than twice the rate for white infants.”
The Camden project has seen its share of progress as well. The percentage of low birth weight babies in Camden has decreased from 13.3% in 1996 to 12.9% in 2001. The number of mothers who received no prenatal care decreased by 27.8%, while the rate of teenagers giving birth fell 22.1%. “This is very encouraging but much works still needs to be done,” Lyons says.
Nurses need to be involved in initiatives like these, she adds, because they provide a national platform for influencing policy and developing programs that can demonstrate successful outcomes through research. Additionally, they can contribute to the development of evidenced-based health care. “If nursing is to continue to grow and thrive as a profession, we need to demonstrate through outcomes how nursing interventions impact the bottom line,” Lyons believes. “Initiatives such as Healthy Start give nurses the opportunity to demonstrate what we do best.”
In particular, she stresses, minority nurses must help lead the charge, because many of the policymakers developing such programs have a limited knowledge of the cultural nuances of many vulnerable populations. “Statistics tell only part of the story,” she says. “Understanding root causes, cultural and linguistic implications and the importance of identifying with someone who looks like you is equally as important. If we are going to improve health outcomes and meet the goals of Healthy People 2010, programs need to celebrate and embrace diversity at many levels. Minority nurses can offer a variety of perspectives.”
Keeping Infants Healthy in Indian Country
Another branch of HHS, the Indian Health Service (IHS), is also taking aim at reducing infant mortality disparities. In 2004, HHS awarded approximately $2 million in funding to seven Tribal Epidemiology Centers and IHS American Indian/Alaska Native service areas to support SIDS reduction interventions. The IHS service areas are Aberdeen (North Dakota, South Dakota, Nebraska and Iowa), Billings (Montana and Wyoming) and Navajo (Arizona, western New Mexico and southern Utah).
Community outreach activities are an important component of these intervention programs. Diane Jeanotte, BSN, RN, MPH, the maternal and child health program coordinator for the IHS Billings area, says collaboration with tribal communities is key.
“The most beneficial approach is having the tribal leaders and health care directors work side by side with us,” she explains. “This can have a reaching effect that can have a major impact on a community level. It has extended [the scope of] our care to include not just in-patient and outpatient but also expanded outreach into the communities. We are raising awareness and involving communities in creating programs. In the long run we will be able to establish behaviors that we need to change, which will lead to a successful pregnancy and infancy.”
(For example, American Indian/Alaska Native women are more likely to smoke and drink alcohol during pregnancy—which can substantially increase the risk for SIDS— than women of other races and ethnicities. According to the CJ Foundation for SIDS, a non-profit SIDS prevention organization that has also collaborated with HHS on SIDS-reduction programs in Indian Country, 20.2% of Native American women smoke during pregnancy compared to only 13.2% of women of all races, and 3.6% of Native women drink during pregnancy, versus 1.1% for women of all races.)
Eight tribal health programs in the Billings service area were funded up to $30,000 a year for three years to support activities promoting maternal and child health and the reduction of SIDS and infant mortality rates, Jeanotte says. These projects, which recently finished year one of the grant, are linked with case management activities that address infant mortality prevention. The four key functions of the projects are:
- Provision of services to pregnant women in local tribal communities.
- Public education campaigns to increase awareness of the importance of early and continuous prenatal care.
- Review of the causes of fetal, infant and child deaths at both the local and state level to identify preventable causes of death and implement policy changes to reduce those deaths that can be prevented.
- Improving services for Medicaid-eligible women who are pregnant.
Short-term objectives include increasing the number of women who initiate their prenatal care in the first trimester; increasing breastfeeding rates; increasing the number of women who are screened and referred for counseling during pregnancy for tobacco and substance use, depression and domestic violence; and providing prenatal health education throughout the pregnancy, focusing especially on the issues of smoking, drug and alcohol cessation, nutrition, safe infant sleeping environment and recognizing the signs of preterm labor. The long-term goals include reducing the rates of SIDS and infant mortality as well as the incidence of infants born with chronic illnesses, birth defects or severe disabilities.
“Nurses are very involved with these initiatives,” says Jeanotte, whose two daughters are of Turtle Mountain Chippewa descent. “Each project is positioned in a public health nursing environment or is working collaboratively with public health nurses, because they [can provide the services these projects need], including home visits to pregnant women and prenatal classes.”
Nurses are in the best position to influence decision-making by pregnant women and their families, Jeanotte adds, because they spend so much time in the community. “In general, nurses have more opportunities to raise awareness, to educate people and help them decide how best to change behaviors that will mean a better birth outcome,” she says.