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 road back from addiction is arduous—for those in the grips of the addiction, of course, but also for the people around them, including their health care providers. Though prescribed manners of treatment exist, every journey to recovery is unique, every substance abuser takes his or her own path. Why should it matter, then, if nurses and other health care practitioners take into consideration the patient’s culture and background? In short, because understanding patients on a more personal level through familiarity with their cultural and social mores can lead to more effective substance abuse treatment.
Panelists Thelma Chandler Director of Clinical Services, Centerstone Donald Degner, M.A. Substance Abuse Services and Randolph County Clinic Coordinator, Centerstone Erick Guerrero, Ph.D., M.A., B.A. Assistant Professor, University of Southern California; Licensed Clinical Therapist Lolita Roland, R.N. Case Manager, Outpatient Addictions Service, Cambridge Health Alliance Andrew Spanswick, M.S.W. CEO and Co-founder, KLEAN Treatment Center
“The general argument is that through cultural competence, providers can enhance the therapeutic alliance, which may lead to high client engagement,” says Erick Guerrero, Ph.D., M.A., B.A., an assistant professor at the University of Southern California and licensed clinical therapist. “Research supports the notion that deep and effective cross-cultural training, translation of material, and use of translators are associated with better engagement outcomes in [substance abuse treatment].”
The solutions start simple, such as cross-cultural education for all providers, particularly managers and administrators, perhaps provided on an annual basis. A straightforward adjustment toward culturally congruent care is providing adequate translation services. For example, it’s hard to refute the instant improvement in communication when pairing Spanish-speaking practitioners with Spanish-speaking patients. In a recent study, Guerrero and his colleagues examined the effects of cultural and linguistic competence in Latinos’ mandated substance abuse treatment (published in the August 2012 edition of Substance Abuse Treatment, Prevention, and Policy). Their study of 5,150 first-time Latino participants in court-mandated treatment programs revealed that the culturally congruent practice of providing Spanish language translation services increased participants’ odds of completing the treatment, notably amongst a population with a high risk of abandoning the treatment.
And, as cultural competence often results in more efficient, effective patient care, it not only benefits patients but potentially administrative bottom lines. So what are some of the other benefits of implementing culturally competent care, and how can nursing teams treating those struggling with substance abuse provide it? Guerrero and several experts in substance abuse treatment share their insights regarding culturally competent care below.
How does cultural competence improve the delivery of substance abuse care?
Roland: “In my experience over the last 40 years in nursing—and in particular over the last 20 years working in the field of addictions—patients who feel accepted, heard, understood, and validated for their strengths tend to do better in treatment. Clinicians who are aware of and knowledgeable about the diversity of cultures and subcultures that exist in the U.S. are in a better position to accurately assess, communicate, and individualize treatment. I believe that when people feel understood and supported within the context of their values and beliefs, treatment outcomes are better. Culturally sensitive clinicians aid the psychological and emotional well-being of their patients and, in so doing, will help foster and nourish a healthier self esteem, especially in substance abusers, who are generally filled with a lot of guilt and shame. Cultural competence should be incorporated into health care training and practice in order to maximize the opportunity for constructive change and recovery.”
Chandler & Degner: “Nurses need to have the ability to understand the cultural differences each substance abuse/ dependent person presents and must hone skills to correctly interpret non-verbal, verbal, and physical cues appropriately. Therefore, cultural competence training in serving substance abuse/dependent consumers is imperative to improve treatment delivery.”
How might nurses improve the cultural competence of their substance abuse care?
Chandler & Degner: “Nurses can improve their cultural competence and understand the culture in which substance abuse/ dependent populations exist daily. The substance abuser/dependent person will not focus on their substance(s) of choice but rather focus on the accompanying affective symptoms (depression, mood swings, anxiety, etc.). Hence, the outcome of working with this client may actually be perpetuating their addictive process.
There are specific cultural aspects of substance abuse/dependence in different populations as well. An example would be a Caucasian substance-abusing male as opposed to a Hispanic male. The very aspect of entering a treatment episode has different cultural barriers for each of these clients. Understanding these cultural differences will enhance motivational interviewing and will place the client at ease. What we view sometimes as resistance is attributable many times to cultural norms of the individual we are serving. Other cultural factors including religion, folk ways, family life, values, and so forth need to be considered when working with and providing medication to the client.”
Guerrero: “Continuing education in areas of cultural and linguistic diversity, as well as in the complexity of substance use and other co-occurring disorders. Informally, service providers benefit from personal and professional interactions with people and contexts that are from other cultural and linguistic backgrounds. These interactions, coupled with a nuanced understanding of the complexity of culture and language in mental health and provider client interaction, may provide nurses with the necessary ‘cultural intelligence’ to effectively engage minority clients. It is through the therapeutic alliance that we service providers have the greatest impact on clients’ attitudes about change.”
Roland: “Nurses can improve the cultural competence of their substance abuse care by ongoing education both academically and experientially. For example, nurses can advocate for regular in-service trainings about this subject on their jobs. Also, state and national organizations can offer conferences and panel discussions that could include minorities in order to get feedback on how we can improve in this area. Nurses working in addictions with minority patients have the opportunity to ask them directly for suggestions on how to improve our treatment specifically for them.”
Spanswick: “Each program tends to treat different problems but all professionals should try to take advantage of cultural competency classes offered by qualified professionals. Areas of cultural sensitivity include understanding different ethic backgrounds, the GLBTQ (Gay, Lesbian, Bisexual, Transsexual, and Questioning) community, and sensitivity surrounding economic status and class. Especially important is for practitioners to understand transference and countertransference issues so that they can try to be consciously aware of their relationship with the client and use tools to create a positive therapeutic join with the client and minimize the risk of clients leaving treatment. It is also extremely important to understand the current drug culture and trends. The most common issues regarding transference are anger and resentment towards the entitlement and denial of early stage addicts in recovery.”
What administrative steps can outpatient clinics adopt to deliver more culturally competent care?
Guerrero: “Quality assurance protocols need to go beyond checklists and rely on existing program evaluation tools to assess the level of cultural competence of their program. That information can inform a strategic plan to invest in areas of need (training, diversity, etc.)”
Chandler & Degner: “Administration is challenged with the opportunity to provide cultural diversity trainings for staff as well as education on alternate delivery methods. In-services training needs to be continual and learning needs to be focused on the various cultural aspects of all encountered aspects of client culture, including races, religion, sexual orientation, age group, etc. While we all cannot be experts, exposure to education over time can provide a broader base of overall cultural diversity within an agency.”
Roland: “Actively recruiting more diversity within the staff and administration is one way to help bridge the gap. Another suggestion is administrations could fund programs about substance abuse that will help educate as well as interest students in urban communities in this particular field of health care.”
Spanswick: “The best administrative step is using the skill of leading by example—administrators should be involved in training just as much as the treatment staff.”
What are some of the barriers to providing culturally competent substance abuse care?
Guerrero: “Individual providers face significant challenges to improve their cultural intelligence and culturally competent care, if they are limited to a monocultural life and professional environment. But the responsibility to develop a culturally competent health care extends beyond individual providers; managers and policy makers are responsible for developing adequate policy and organizational incentives for providers to engage in cross cultural training, implement evidence-based culturally responsive practices, and to track client outcomes. Substance abuse treatment providers are generally ill-prepared to implement new practices, including translation services, family based protocols, recruitment of diverse staff, cross-cultural training, etc.
In my research, I found that the major barriers to implement culturally responsive care are leaders and staff attitudes about the effectiveness of culturally competent practices and resources necessary to implement such practices. Interestingly, implementing such practices is not cost-prohibited; most programs have resources to translate material, prioritize hiring of diversity, or modify treatment protocols to include families in the treatment process. It is just not a priority until leaders support it or funding entities require it.”
Chandler & Degner: “The greatest barrier that exists in providing culturally competent health care is to be able to respond in an empathetic and supportive way to the client who presents for treatment. Many times it is our own fear of our knowledge base as it pertains to cultural differences. Training and education are key in meeting the demands and serving a more diverse population.”
“Another barrier, particularly in rural settings, is the lack of exposure to a more diverse consumer population. This, however, does not preclude those within the helping profession in these areas from exposure to a culturally diverse client base. . . . [We] need to educate ourselves and do what we can to understand emerging populations.
Additionally, the substance abuse/dependent population is ever changing, including the substances abused, the manner in which substances are abused, the background of users, etc. Referrals from businesses in the city as well as rural areas provide challenges for us to become better equipped and knowledgeable in understanding how to serve these many diverse populations and their very specific needs.”
Roland: “As an African American I can speak directly to some of the barriers that I know exist. There is a double stigma of being an addict and also being black in a predominately white culture where racism still persists. There is also—although I think this is changing somewhat—a stigma within the black community itself against getting psychiatric and addiction care. Many believe that giving one’s life to the Lord and going to church is all one needs for healing. . . . Other barriers are economic, as some people can’t take the time off from their jobs for treatment. Others, particularly women, may be hindered because of childcare issues. Homelessness and lack of adequate transportation or the money to travel to treatment facilities is also a problem. While some of these are barriers to health care in general, treatment programs may need more funding to hire clinicians willing to work evenings to facilitate groups and family meetings.”
Spanswick: The lack of diversity in hiring and organizational ‘group think’ and culture, which tend to be self-reinforcing of a singular cultural sensitivity—it’s important to try and join with clients from where they are at the point of admission.”
What resources or readings can you recommend to nurses wishing to improve the substance abuse care they provide their patients?
Guerrero: “For practice-oriented material, check with National Center for Cultural Competence website.”
Chandler & Degner: “The American Society of Addiction Medicine (ASAM) Patient Placement Criteria is a great resource. ASAM has provided substance abuse professionals with criteria that assist nurses in discerning the correct level of intervention needed for their patients.”
Roland: “A good article that I would recommend is ‘Cultural Competency: Its Impact on Addiction Treatment and Recovery’ from Resource Links, Volume 7 Issue 2.”
How has the delivery of care changed over the past 10 years and what work remains to be done?
Chandler & Degner: “The cultural diversity training presented 10 years ago was more cursory compared to today. Changes in population(s) served has driven a need for a more culturally aware and culturally competent staff. Population(s) across the U.S., both in the heartland and on our coasts, have changed drastically during the past 10 years.
Just the Stats The federal Substance Abuse and Mental Health Services Administration (SAMHSA), it its 2010 National Survey on Drug Use and Health (NSDUH), reports that approximately 22.6 million Americans over the age of 12, or 8.9%, are illicit drug users. Just over 22 million, or 8.7%, could be classifi ed as substance dependents or abusers. Of those considered dependent, 15 million abused alcohol but not drugs, 4.2 million abused drugs but not alcohol, and 2.9 million abused both. The NSDUH study also found rates of substance dependence or abuse according to race/ethnicity as follows (for 2010 amongst those aged 12 and older):
American Indians/Alaska Natives: 16%
Hispanics: 9.7%
Persons Reporting Two or More Races: 9.7%
Caucasians: 8.9% – African Americans: 8.2%
Native Hawaiians/Pacifi c Islanders: 5.6%
Asians: 4.1%
Even though every year we go through training on the topic of understanding cultural diversity, it does not meet the needs of the ever-changing consumer populations. We are more challenged to be knowledgeable about the cultural heritage of patients and how it impacts their care, now more than ever before. Because of the culturally diverse populations in rural communities and larger cities especially, we must improve our understanding of what the specific populations’ needs are and also change the way we provide treatment to ensure that we are responding to these more culturally diverse populations in the most effective way.”
Roland: “I think that awareness has definitely increased. There are more books, articles, and trainings on the subject. Years ago, this wasn’t even talked about. Mandatory trainings on the subject of cultural competence need to be implemented in health care institutions. Patients who are not part of the mainstream culture need to be asked how we can help improve in this area. Then these suggestions need to be implemented.”
Spanswick: “The field is constantly evolving and the types of drugs and the culture changes. I would say that the biggest change in the last 10 years is the use of prescription opiates and crystal meth, which has required clinicians to use more family-based education as to what is and what is not a drug that is likely to become one that carries more danger. It is appalling how many ‘drug addicts’ become accidental abusers of prescribed medication—this is something we see too often at KLEAN Treatment Center.
As a field we are just beginning to understand addiction and how the brain works. As science progresses, I believe the medical models will become much more sophisticated and will dominate the field. Culturally we have made huge strides in the past 50 years but there is always room for more understanding, especially as cultures are constantly evolving. Most importantly we need to constantly remind ourselves that every client is different, all have unique issues, and it is the primary relationship between clinician and client that can produce the greatest outcomes in the long term.”
Hypertension is a major health concern for African Americans. They develop high blood pressure more often and at an earlier age than other ethnicities, including Caucasians and Mexican Americans. The Centers for Disease Control and Prevention (CDC) reports that more African American women than men are affected by hypertension.1 According to Demede et al., African American adults have the highest rate (44%) of hypertension in the world and are more resistant to treatment.2 Hypertension is often called “the silent killer” because there are no symptoms, so it frequently isn’t detected until routine medical visits. The only way to know if one’s blood pressure is high is to have it checked regularly.
Compounding these problems, noncompliance to antihypertensive medication in African Americans is common and leads to complications like strokes, heart attack, heart failure, and chronic kidney disease. These complications affect African Americans at alarming rates. Noncompliance can be intentional or unintentional, but the causes tend to remain the same. Lack of knowledge, misconceptions about the disease, heath beliefs, and education level are all factors that can affect medication compliance. Noncompliance often occurs because patients are unaware of the consequences of failing to take their medication as prescribed or are unable to afford the cost of the medication. Patients frequently report that they feel fi ne, which leads them to believe they no longer need their medication. But in reality, they need to continue taking it consistently, even when their symptoms don’t exist.
Not so surprisingly, patients often associate the idea of “feeling better” as an expected result of taking their prescribed medication. Therefore, the patient will stop taking the antihypertensive medication because they do not experience any improvement. Side effects also play an important role towards noncompliance, while many patients are simply unable to afford the medication. For some, there is no other choice but to feed their families and pay rent, especially when they don’t see any improvements in their health.
Health care professionals often fail to remind patients of the importance of continuing to take their medication, even when their blood pressure is normal and they feel fine. Explaining a medication’s side effects is also essential so patients will not become alarmed if they experience any—often resulting in patients discontinuing the use of their medication. Many patients have reported that they stopped taking their blood pressure medication because their health care team has repeatedly told them their blood pressure is fine, so they didn’t feel the need to continue the medication.
Odedosu et al. agreed that emphasis should be on patient education, particularly addressing misconceptions about hypertension and promoting adherence to antihypertensive therapy.3 In teaching patients how to manage their disease and how to be compliant with their medications, clinicians need to go much further than just reminding patients of the ramification of not taking medication as prescribed. Reminding patients to take their prescriptions— even though their blood pressure is normal—should be part of the conversation at all visits. Interventions specific to each patient must be addressed and include the following: patient education, behavioral counseling, lifestyle modification, and home self-monitoring. It’s in the hands of health professionals to educate African American and other minority patients as much as possible on the medications themselves and the necessary reasons for continuing to take them.
References
Centers for Disease Control and Prevention, “High Blood Pressure Facts,” www.cdc.gov/bloodpressure/facts.htm.
M. Demede, A. Pandey, L. Innasimuthu, G. Jean-Louis, S.I. McFarlane, and G. Ogedegbe, “Management of hypertension in high-risk ethnic minority with heart failure,” International Journal of Hypertension, (2011), 1-8, doi: 10.4061/2011/417594.
T. Odedosu, A. Schoenthaler, D.L. Vieira, C. Agyemang, and G. Ogedegbe, “Overcoming barriers to hypertension control in African American,” Cleveland Clinic Journal of Medicine, 79 (2012), 46-56, doi:10.3949/ccjm.79a.11068.
Nurses are the largest health care workforce in the United States, but in our patients’ eyes, we may not have much force at all. In 2010, the Institute of Medicine (IOM) published a report on the Future of Nursingand made recommendations that just as easily could have come from patients with sickle cell disease (SCD), had we listened.
During the 2011 faculty retreat at the University of Illinois at Chicago College of Nursing, we deliberated on the IOM recommendations. Recently, as I read anecdotes of patients with SCD from my research on perceived injustice—a context-bound unfairness of treatment that a person receives from important others, such as health care providers—I noticed striking similarities with the IOM recommendations.1,2
SCD is an inherited blood disorder affecting approximately 80,000–100,000 people in the United States, mostly of African descent; it’s among the most common fatal inherited diseases. Pain crisis, its hallmark and most disabling complication, is severe and recurrent. Patients with SCD often interact with nurses within the health care system asking for help to control their pain.
As I read the research anecdotes from patients with SCD about their interactions with nurses, the patients’ message was clear: nurses lack enough training about SCD to provide competent pain care. They echoed the IOM’s recommendations:
Implement nurse residency programs
Some nurses recognize inadequacies in their education but blame their incompetency in caring for patients with SCD on nursing education programs. One patient wrote about a nurses’ comment to her, “When you attend school to become an RN, the [nursing] school [doesn’t] go into a lot of details on SCD.” Nurse residency programs could provide nurses with opportunities for exposure to diverse patient populations and engender necessary confidence for clinical practice. One may contend that lack of funding is a barrier for residency programs to implement this education. But it is costlier to the U.S. health care system not to do so. In 2006 alone, the cost of acute health care visits for patients with SCD was $2.4 billion.3 If nurse residencies could help reduce the 33.4% and 22.4% of patients with SCD re-admitted within 30 days and 14 days, respectively, for pain crisis, there would be possible substantial cost savings.4
Ensure that nurses engage in lifelong learning
Patients with SCD say that nurses need lifelong learning to champion their care. One patient asserted that “there needs to be more training on [SCD] and more understanding of why it is necessary to treat [SCD] pain crisis with narcotics ASAP to help patients get control of the pain and move toward ending the painful crisis.” Another said most of her problems come “from ignorant nurses.” Lack of time could factor as a deterrent for continuous learning. But with advancement in technology and Internet access, nurses can search and learn about a disease in no time and with little cost.
Prepare and enable nurses to lead change to advance health
Sickle Cell Resources Online American Society of Hematology: www.hematology.org Health Power for Minorities: www.healthpowerforminorities.com The Office of Minority Health: http://minorityhealth.hhs.gov Sickle Cell Disease Association of America, Inc.: www.sicklecelldisease.org
Patients with SCD, particularly those who are knowledgeable about their conditions, want a partnership with nurses for better control of their pain. Nurses are well positioned to be their champions, but need personal and professional growth. A patient with SCD applauded a nurse who embodied this recommendation when she wrote, “Few nurses took training from Dr. X, and my nurse came to me and said that she now understood more on our pain and that she [learned] a lot about SCD that she didn’t know.” This statement gives me hope for our profession. We need more efforts to sustain it and advance health for those with SCD.
It is in nurses’ best interests to engage in personal and professional development. The consequence of inaction could be detrimental. We may be the largest health care workforce, but without much force we lose patients’ trust in our competency, profession, and ability to ease their suffering. The IOM report is a “dawn of a new day” for nurses, and we are in an excellent position to advance health care. We should take advantage of its recommendations and this opportunity to improve the nursing profession so that all patients maintain the trust they have bestowed upon us.
Acknowledgements
The work cited in this publication was made possible by funding from the NIH Basic and Translational Research Program (1 U54 HL090513) and the Computerized PAINRelieveIt for Adult Sickle Cell Disease (R01 HL078536). The author thanks the patients with sickle cell disease for their study participation; the staff at the Comprehensive Sickle Cell Center for their support of the work; her colleagues (Diana Wilkie, Ph.D., R.N., F.A.A.N.; Robert Molokie, M.D.; and Crystal Patil, Ph.D.); and the other members of the research team for their assistance with study implementation (Marie Suarez, Ph.D.), data management (Young Ok Kim, Dr.P.H., R.N., C.H.E.), and data collection (Harriett Wittert, B.S.N.; Jesus Carrasco, B.A.; and Veronica Angulo, B.A.).
References
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The United States is in the midst of an epidemic. Obesity rates across the country are staggering, having increased dramatically over the last 25 years. Research suggests that more than one third of adults, or over 72 million people, were obese in 2005–2006.1
Though there was no significant change in obesity numbers between 2003–2004 and 2005–2006 for men or women, this does not negate the need to direct attention and intervention efforts into mitigating the effects of obesity and addressing the underlying reasons for its high prevalence.2 And while this problem runs rampant among adults, it has been steadily encroaching upon children and is particularly disproportionate among minorities.
Defining obesity: a refresher
According to the Centers for Disease Control and Prevention (CDC), the body mass index (BMI), which correlates with body fat, determines overweight and obesity ranges using weight and height. An adult with a BMI of 25–29 is considered overweight; a BMI of 30 or higher is considered obese.3 BMI is calculated by weight in kilograms and height in meters squared (kg/m2); for English measurements, use lb/in2 x 703. BMI charts are also widely available on the Web, including at the CDC website (www.cdc.gov).
Obesity has been linked to a number of chronic health conditions, including diabetes, cardiovascular disease, and some forms of cancer, as well as increased health care expenditures—it simply costs more to be obese.4 In particular, an obese person spends $1,429 more in medical bills compared to a person of a healthy weight. The annual obesity expenditure in the United States is an estimated $147 billion dollars.5
While the pervasiveness of obesity is troubling in and of itself, some of the more shocking statistics are found amongst minority populations. A 2009 CDC Morbidity & Mortality Weekly Report revealed that from 2006–2008 African Americans had 51% higher prevalence of obesity compared to Caucasians, with Hispanics having a 21% higher prevalence.6 African American and Hispanic women seem to be particularly vulnerable and representative among these numbers. Recent data show racial and ethnic obesity disparities for women, but not for men. Non-Hispanic black and Mexican American women were more likely to be obese than non-Hispanic white women. For men in general, obesity prevalence rose from 27.5% in 1999–2000 to 32.2% in 2007–2008.2
The disproportionate instances of obesity within minority populations may have roots in a number of factors. However, none can be addressed without examining the effects of U.S. health disparities, as well as the impact of social determinants of health. Two overarching national public health goals in the United States are to increase healthy life expectancy at all ages and to eliminate health inequalities according to gender, race or ethnicity, education or income, disability status, geographic location, and sexual orientation.7 But persistent health disparities—inequalities in health outcomes because of social disadvantages—have been an ongoing challenge within minority communities, hindering those national goals.4 According to Carter-Pokras & Baquet (2002), any health disparity should be viewed as a chain of events signified by a difference in environment; access to, utilization of, and quality of care; health status; or a particular health outcome that deserves scrutiny.8 Education and income levels contribute to disparities, but living conditions and behavioral risk factors also impact health.
These disparities become more notable considerations as the minority population increases. A U.S. Census Bureau population profile of 2010 indicates that over the past decade America’s population has grown by 9.7%, accounting minorities for 92% of that growth. The number of Hispanics grew approximately 43%, with the Asian population at the same rate, and the African American population increased in number by 11%. The total minority population increased 29% over the past decade, and now comprises approximately one-third of the American population.9,10
Evidence also suggests a relationship between socioeconomic status, income, education, and higher rates of overweight and obesity.1 Members of minority communities often reside in more urban areas, and these areas may provide limited or no access to healthy options for food, physical activity, or security. Residents in low-income urban areas are more likely to report greater neighborhood barriers to physical activity, such as limited opportunities for daily walking or exercise and reduced access to stores that sell healthy foods, especially large supermarkets.11
Nurses in the fight against obesity
Public health nurses are effective in responding not just to the needs of the majority population, but also allowing for, even ensuring, the inclusion of minority segments. Aware of the unique challenges these populations face, nurses can educate—and advocate—for change where they work and live. After all, isn’t the term “public” indicative of representation of diversity among the population?
Obesity is a complex problem, and finding the root causes will help to inform possible solutions. Contributing to the problem is a lack of income and education, cultural differences, environmental changes, learned behaviors for coping, and food advertisements. From an economic perspective, people purchase foods they can afford; they are not necessarily thinking about the future consequences of those choices. And with lower-income populations—also consistently disproportionately composed of minorities—affordable healthy food alternatives should be strongly advocated, (i.e., farm cooperatives, farmers’ markets, free community nutrition workshops, etc.). Safety concerns might also make it hard for people to walk about their neighborhoods and for children to go out and play; nurses can inform their patients of known safe exercise areas and other community resources, like high school gymnasiums or free athletics classes at a public park or YMCA.
The influence of social factors, access to quality food and exercise, and individual factors around maintaining a healthy weight must be addressed. Each has an indirect and direct influence on behavioral choices and may ultimately impact weight. Individual-level characteristics (including income, cultural preferences, and genetic predisposition) contribute to macro-level considerations (neighborhood services, government health initiatives, education, etc.). These all feed the obesity epidemic, the significance of which public health nurses cannot overlook. Structures that affect physical activity behaviors and dietary choices are emerging as important and are potentially amenable to public health intervention efforts.
Yet, nurses cannot fight alone. A collaborative effort must be sought to help sustain community programs, which means establishing dialogue and partnerships between all stakeholders. Key legislative offi cials, health care providers, local businesses, community residents, journalists, educational administrators, nursing organizations—all must rally to address the problem of obesity systemically. The CDC’s Division of Nutrition, Physical Activity, and Obesity and the American Obesity Society (www.obesity.org) have online resources to help nurses and other health care professionals combat obesity. On an individual level, nurses can assess their own living, working, social, and other environments. They can engage and advocate for their immediate community and, ultimately, their state and country. Nurses working in public health facilities can be especially influential, as they may treat patients with the fewest resources. Educating one’s patients—whether through simple instructions during an exam, dispersing informational brochures, or even volunteering to speak at local schools and community centers—is the fi rst step in prevention.
Though health care is not yet available to all at this moment in history, public health nurses can reduce the impact of obesity on the nation’s most vulnerable populations.
References
C.L. Ogden, M.D. Carroll, M.A. McDowell, and K.M. Flegal, “Obesity among adults in the United States—No Statistically Significant Change Since 2003–2004,” NCHS Data Brief No 1, National Center for Health Statistics (2007). Accessed 2011. www.cdc.gov/nchs/data/databriefs/db01.pdf.
K.M. Flegal, M.D. Carroll, C.L. Ogden, and L.R. Curtin. “Prevalence and Trends in Obesity Among US Adults, 1999-2008,” The Journal of the American Medical Association, 303, no. 3 (2010): 235–241. Accessed 2011. doi:10.1001/jama.2009.2014.
Centers for Disease Control and Prevention, “Defining Overweight and Obesity,” (2010). Accessed 2011. www.cdc.gov/obesity/defining.html.
A. Stratton, M.M. Hynes, and A.N. Nepaul. “The 2009 Connecticut Health Disparities Report,” Connecticut Department of Public Health (2009). Accessed 2011. www.ct.gov/dph/cwp/view.asp?a=3132&q=433794.
Diana Holden. Fact Check: The Cost of Obesity. “Fit Nation” coverage, February 2010. CNN. com, accessed 2011. www.cnn.com/2010/HEALTH/02/09/fact.check.obesity/index.html.
L. Pan, D.A. Galuska, B. Sherry, A.S. Hunter, G.E. Rutledge, W.H. Dietz, and L.S. Balluz. “Differences in Prevalence of Obesity Among Black, White, and Hispanic Adults—United States, 2006–2008.” Centers for Disease Control and Prevention. Morbidity & Mortality Weekly Report 58, no. 27 (2009): 740–744. Accessed 2011. www.cdc.gov
Sam Harper and John Lynch. “Trends in Socioeconomic Inequalities in Adult Health Behaviors Among U.S. States, 1990–2004.” Public Health Reports 122 (2007): 177–189.
Olivia Carter-Pokras and Claudia Baquet. “What is a ‘Health Disparity’?” Public Health Reports 117 (2002): 426–434.
“The Census: Minority report,” The Economist, Accessed March 31, 2011. www.economist.com/node/18488452.
“Population Profi le of the United States.” U.S. Census Bureau. Accessed 2011.
J.L. Black and James Macinko. “Neighborhoods and Obesity.” Nutrition Reviews 66, no. 1 (2008): 2–20.
