Closing the Infant Mortality Gap

Closing the Infant Mortality Gap

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.

The Case for Forensic Nursing

Although she didn’t know it then, a personal trauma in 1994 changed the course of Karen Coleman’s professional career. Coleman, an emergency room RN at the time, was raped by her then-husband, who had been barred from her home by an order of protection.  “When I went to the hospital after the assault, I had a physician perform the evidence collection kit and he didn’t have any idea what he was doing. He had no clue,” she recalls. “He wasn’t sure about the process. He wasn’t familiar with collecting evidence. I had to show him how to do my own rape kit.”

Today, Coleman, who is African American, is the Sexual Assault Nurse Examiner (SANE) coordinator for Victims Assistant Services in Elmsford, N.Y. It was by chance, Coleman says, that she learned about the field of forensic nursing. Three years after surviving her assault, she came across an article about nurses being specially trained to do forensic examinations of rape victims, and she learned that a SANE program was being considered in her county.

Coleman attended several meetings about the new program, which she then was asked to coordinate. “I thought it was ideal, because I felt nurses could do these exams,” she says. “Having been a victim myself and receiving a less than optimal exam, I made it my mission in life to make sure no one else would ever have to go through that.”

Coleman is now responsible for the recruitment, hiring and retention of SANE nurses for her program, which operates in 11 of the 14 hospitals in Westchester County. Her position is full time but the nurses hired into the program work on call.

“Forensic nurses ensure that evidence is collected appropriately and can be used in a court of law,” Coleman notes. “It’s important that crime victims know about us. All you hear about are the horror stories of waiting in the hospital and having physicians like the one I had who don’t know what they’re doing, who are less than compassionate and who tend to judge the victim.”

I’ll See You in Court

Forensic nursing is a relatively new field that combines the health care profession with the judicial system. In 1995 the American Nurses Association officially recognized it as a specialty of nursing. In April 2002, the International Association of Forensic Nurses (IAFN) held the first international certification exam. The 71 nurses who passed the exam earned the international designation SANE-A (Sexual Assault Nurse Examiner-Adult and Adolescent).

Coleman plans to take the exam when it is offered again in October, following IAFN’s Tenth Annual Scientific Assembly in Minneapolis. In addition, five states–Kentucky, Maryland, New Jersey, South Carolina and Texas–have their own certification exams for sexual assault nurse examiners. Texas and Maryland offer separate certifications for adult and pediatric cases. While certification is not mandatory in order to work as a forensic nurse, Coleman believes it gives added credibility. This is important because one of the key parts of the forensic nurse’s role, in addition to performing the comprehensive exam in the hospital, is to give testimony in court.

“The legal system is beginning to recognize the expertise of forensic nurse examiners and we are beginning to be qualified as experts,” Coleman explains. “If you can say when you are giving your credentials that you have taken a state-approved training, that you have taken a state-approved or nationally approved certification exam and you passed it, then at least you are able to say that you have met the standards for this profession of nurses and that you can be considered an expert with more knowledge than the average person in the field of sexual assault.”

When testifying in court, forensic nurses can be qualified as either an expert witness, who is allowed to give his or her opinion, or a fact witness (who, as the name implies, can only state the facts). This ruling is made by the judge.

“The prosecutor will present you, knowing you will discuss your background, the number of cases you have performed, what you do and what your job is,” says Jean Epps, RN, BSN, coordinator of the Sexual Assault Nurse Examiner Program at Howard University Hospital in Washington, D.C.  Epps, who is African American, is a CFNE (a forensic nurse examiner certified by the state of Maryland).

When testifying at trials, forensic nurses are there to present information in an objective way. “Even though the prosecution may call you, you are not there to speak for or against the victim or the defendant. You are just there to present the facts of the examination,” states Epps, who also plans to take the IAFN SANE–A examination in October.

What Minority SANEs Bring to the Table

Because forensic nursing is such a new and rapidly growing specialty, it offers tremendous opportunities for both recent graduates and experienced RNs looking for a career change. Moreover, there is also a strong need for better minority representation in the field.

According to Coleman, “there are just not that many of us [nurses of color] working in this area. However, approximately 50% of the victims we treat are African American. You can probably add another 20% who are Latina.”

If minority women knew that there were more forensic examiners who were also people of color, they would be even more likely to seek medical assistance, Coleman believes. “During their experience of being a victim, they are going to be coming into contact with law enforcement people who, chances are, will not look like them,” she says. “I just think it adds a level of comfort. I am not saying, however, that because I am African American I am any better able to take care of a rape victim. I just think it is helpful to see someone that kind of looks like you among all the people you are gong to have to deal with.”

This victims’ advocacy role is important to Coleman, who has become a vocal supporter of her chosen field. She often gives talks about forensic nursing and is interviewed by the media. She appeared in the Lifetime television documentary “Fear No More,” which told the stories of five women who were victims of violence. “Rape is a conspiracy of silence, and those who are able to talk about it should do so,” she insists. “There is no shame in being a victim.”

Tools, Techniques and Teams

Helping More Than Just Rape Victims

While much of the focus of forensic nursing is on the sub-specialty of sexual assault, forensic nurses are not limited to working on these types of cases. Many forensic nurses work with victims of other types of interpersonal abuse, including domestic violence, child and elder abuse/neglect and physiological/psychological abuse. Forensic nurses can examine victims of near-fatal or fatal traumas, such as shootings or stabbings. Some even work as death investigators.

Lucretia Braxton, RN, sees a wide range of patients in her role as a forensic nurse examiner in the emergency room at the Medical College of Virginia at Virginia Commonwealth University. Braxton, who is African American, trained at the Virginia State Police Academy in Fredericksburg, first as a SANE and then as a Forensic Nurse Examiner (FNE). She earned state certificates in both areas at the academy, but Virginia doesn’t certify nurses in these areas.

The emergency department where Braxton works is the leading trauma center for the state of Virginia. In a typical month, Braxton estimates that the department’s forensic nurses handle 20 sexual assault victims and ten homicide victims. The murder victims eventually go to the medical examiner’s office, but while the ER team is working to try to save the person’s life, the forensic nurse collects evidence. The nurse may even follow the victim up the operating room to complete the evidence collection. The center also sees quite a few domestic violence victims. “These victims don’t always report it, so it is hard to quantify how many there are,” she adds.

Objectivity is a key part of being a forensic nurse, Braxton believes. “You have to know when to draw the line between being an empathetic nurse and being there just to collect your evidence,” she explains.

In cases of stabbings or shootings, forensic nurses collect such things as bullets and any debris that is on the body, such as leaves that may have clung to the body from the crime scene. They are also in charge of removing the bloody clothes the victim was wearing and putting them in a special wrapping. These nurses also photograph and measure wounds.  If the victim dies, the forensic nurse examiner will often collaborate with the medical examiner on the case, answering any questions he or she may have regarding what the nurse saw.

Braxton says a background in emergency nursing is helpful for nurses who want to move into the forensic field. “It gives you the experience you need in how to work with trauma victims,” she explains. “When the victims are brought into the ER, you see the very initial trauma right there. If you are trained and experienced in emergency nursing, you know how to react to what you are seeing, what you need to do, what the doctor needs, what he is going to call for.” As a forensic nurse, she adds, you are also trained to know what things not to touch, so that evidence is not accidentally destroyed.

A Ground-Floor Opportunity

Not only is forensic nursing an exciting and rewarding career, there is also a growing demand for nurses with these specialized skills. “Forensic nursing is expanding, more so than it used to be,” Braxton reports. “Forensic nurses are being incorporated into the emergency room setting now. In the past, hospitals felt that if evidence needed to be collected, any nurse could do that. Today we are finding out that the more expertise a nurse has in knowing exactly what should be collected, the better the evidence turned over to the detectives will be. And that can help lead to a better outcome in catching the perpetrator.”

Nursing schools are starting to recognize this trend as well. In September, Johns Hopkins University School of Nursing in Baltimore began offering an MSN–Clinical Nurse Specialist, Forensic Nursing Focus program. The school tapped Daniel Sheridan, RN, PhD, a forensic clinical nurse specialist at Johns Hopkins Hospital Department of Emergency Medicine, to create the new program.

“I convinced them that there was a need for it,” says Sheridan. “I have been a forensic nurse for many years, and Hopkins School of Nursing realized there is a growing need and a growing interest in this whole area.” Since the field is in its infancy, he adds, forensic nurses often have the advantage of helping to create their own positions, and even whole forensic nursing departments.

Prior to joining Johns Hopkins, Sheridan worked as a full-time employee for the state of Oregon, investigating abuse of institutionalized people who were mentally and cognitively impaired. He was the only member of the team who was a nurse. “This is a brand new area and people are still carving out new and innovative roles for the forensic nurse,” he emphasizes. “You have to really go out and be able to market yourself, to explain that you have specialized experience and training that are going to help an institution. This field really is at the ground level.”

Karen Coleman agrees, adding that the satisfaction her job brings her is amazing. People often ask her how she can work in such a difficult and traumatic field. “But once you get into this work, you know that everything you do is going to help a victimized person, and hopefully lead to a conviction in a court case,” she says.

Coleman adds, however, that helping to convict criminals is not her primary goal. “My focus is to help that victim get through that medical experience,” she maintains. “I hope that as we get better at taking care of victims, collecting evidence, providing support and linking them up with services, more victims will come forward and cooperate with law enforcement and there will be better outcomes in court.”

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