Hispanic mothers want to continue making their own infant feeding decisions and they want unrestricted access to infant feeding information, according to a recent national survey. The new survey also shows that Hispanic mothers in the United States do not agree with hospital or government policy that limits their access to educational information on infant formula and samples during their hospital stay.
The nationally representative survey of mothers with children under 12 months was conducted by the bipartisan team of Greenberg Quinlan Rosner Research (GQRR) and Public Opinion Strategies (POS) and sampled opinions of more than 1,000 moms (210 of which identified as Hispanic).
“Hispanic mothers are telling us that they want to feel supported by hospitals and health care providers whether they choose to breastfeed or formula feed,” says Anna Greenberg, Senior Vice President at GQRR. “Being fully informed is important to moms and they trust hospitals to not restrict their access to infant feeding information and formula samples.”
62% of Hispanic mothers have already decided how to feed their babies before entering the hospital
79% of Hispanic mothers get infant feeding information from their doctors and nurses
Hispanic moms reported not being able to produce enough breast milk, having to go back to work or school, and the cost of a breast pump as the three biggest barriers to feeding their baby breast milk
93% of Hispanic mothers said restricting the use of formula in the hospital would not have changed their decision on whether or not to breastfeed or how long they breastfed
91% of Hispanic mothers approve of hospitals giving out hospital discharge bags with infant formula samples and 83% said they used the samples they were given
72% of Hispanic mothers opposed hospital policies that restrict hospital discharge bags with infant feeding information and infant formula samples and 82% opposed government restrictions on hospitals hospital discharge bags
“The National Association of Hispanic Nurses (NAHN) believes that breastfeeding is the ideal infant feeding choice. However, we also believe it’s important that moms receive information on both breastfeeding and infant formula,” says Jose Alejandro, President of NAHN. “According to the new survey, only 55% of Hispanic moms polled reported receiving educational material on infant formula. Hispanic mothers that do not receive information on safe preparation and use of formula may be at a disadvantage.”
When asked what actions could help increase breastfeeding in the United States, 24% of Hispanic mothers said, “guaranteeing paid maternity leave or longer maternity leave” and 28% of Hispanic mothers who received health and nutrition assistance through Women, Infants, and Children (WIC) said, “providing more support from health care professionals after mothers leave the hospital, including home visits following birth.” Hispanic moms also said they would like more breastfeeding support in the workplace.
“These are areas where health care providers, the government, and employers could do more to support Hispanic mothers to increase breastfeeding initiation and duration rates,” Alejandro adds.
Hispanic mothers identified a number of other barriers that either prevented them from initiating or continuing breastfeeding—the most common of which include the inability to produce enough milk and problems associated with breastfeeding (e.g., sore or cracked nipples, engorged or leaking breasts, breasts infected or abscessed).
“Many Hispanic mothers want to breastfeed,” states Greenberg, “but oftentimes they realize that when it’s time to go back to work, continuing to exclusively breastfeed and maintain their milk supply can be difficult without adequate support.”
For more information, contact Celia Trigo Besore, MBA, CAE, Executive Director & CEO, National Association of Hispanic Nurses, [email protected].
According to recent census figures, most babies in the United States are members of minority groups for the first time in U.S. history, consequently showing signs that Caucasians may no longer be the majority. Last year’s estimates show that 50.4% of children younger than a year old were Hispanic, African American, Asian American, or in other minority groups.
A large immigration wave that began four decades ago seems to have led to the shift. Inevitably, the white population is growing older, but at a “faster” pace when compared to Hispanics. In addition, the average age of non-Hispanic whites is 42—past prime childbearing years—making the white population less likely to reproduce. The U.S. census has predicted that non-Hispanic whites will be outnumbered in the United States by the year 2042.
However, given the current outlook, a continued Hispanic baby boom is not a certainty. Immigration from Mexico has been put on hold, even begun declining. But, William Frey, a demographer with the Brookings Institution, believes once the economy stabilizes, the United States will be seeing more immigrants.
Some public health problems are so extensive that they can only be solved with a coalition of support from health care professionals and the community at large. Dinah Ramirez, RN, president of the Illinois Hispanic Nurses Association, a local chapter of the National Association of Hispanic Nurses (NAHN), believes that gangs in her community are one such public health problem, and she is using her role as a nurse to help solve it.
Dinah Ramirez, RN
Ramirez is co-chair of the Southeast Chicago Anti-Gang Initiative (SECAGI), a coalition of over 30 neighborhood agencies and organizations. She also serves as coordinator of the Healthy South Chicago Coalition (HSC), a consortium of local health care facilities, community service agencies, churches, schools, businesses and other neighborhood groups formed in 2001 to promote access to expanded community health services, promote healthy behavior and foster a positive community environment.
About three years ago, Ramirez helped HSC distribute over 400 surveys to nearby residents. The purpose of the surveys was to identify and assess community concerns so that HSC could develop appropriate resources and services. The coalition initially sought community input to help plan routine services such as after school programs. But the information they received from the surveys made it clear that there were deeper issues to address.
“Most people were concerned about youth, gangs and youth violence,” Ramirez explains. “We did not have [any programs] that dealt even minutely with gang members.”
Turning Exclusion into Inclusion
As a nurse, Ramirez was also struck by the health care aspects of the survey results. They revealed a lack of access to medical care for young people most likely to be affected by gangs.
“[Social service] agencies usually exclude these high-risk teenagers,” she says. “That includes health care, any outreach for HIV, STDs, teen pregnancy, etc.”
Of course, health care facilities have a right to make sure that their environment is safe and orderly. “You don’t want gang members to be fighting inside your lobby,” Ramirez admits. However, she finds that health care providers’ fear of gangs often has the result of penalizing young people who need treatment. The tactics medical facilities use to exclude gang members are subtle.
“Access to care has a lot to do with customer service,” Ramirez believes. For instance, if a person is made to feel out of the loop or disenfranchised, they may not seek care, especially in non-emergency situations. High-risk Hispanic youths in urban areas like South Chicago face other barriers to care as well, Ramirez continues. “Language is the biggest one, but also attitude,” she says.
As a result, some gang members use the emergency room as their primary source of health care, with no preventive measures taken at all. This poses problems for the larger community, which may then have to deal with higher instances of teen pregnancy and a potentially higher HIV/AIDS rate.
For Ramirez, this is unacceptable. She reasons that gang members cannot be excluded from health care facilities–or from schools and other social services, for that matter–without consequences. “They’re going to be back in your neighborhood,” she warns. “If you expel them, then they’re out on the streets full time. They don’t go away.”
Ramirez aims to help restore good customer service to health care and to help all populations in the community feel welcome. Beyond just treating patients’ physical ailments, she and her colleagues at Healthy South Chicago try to express an attitude of involvement. For example, they refer medical services to patients who may not otherwise know how to navigate the health care system.
Working on a Larger Scale
Another officer of the Illinois Hispanic Nurses Association who is helping to serve at-risk minority youth in South Chicago is Loraine Moreno, RN. She works at Chicago Family Health Center, a federally funded non-profit community health center that is a member of HSC and serves about 18,000 patients annually. A few years ago, Moreno and her colleagues discovered that local teenagers in high risk groups did not know where appropriate medical facilities were located and or what health care services might cost. She also found they needed to seek care without worrying if the color of their clothes would offend a rival gang member.
Loraine Moreno, RN
The health center came up with a solution to these problems by opening a site adjacent to a local high school. Moreno discovered that this had the positive effect of her being able to offer the kids more information on drug intervention programs as well as help dealing with family issues and other pressures of teenage life. “Now they can get info about drug use, stress management and domestic violence,” she says.
Ramirez and Moreno have also amplified their outreach efforts by partnering with other SECAGI and HSC members. After the coalition received its alarming survey results, representatives of its member organizations met monthly to brainstorm ways of reaching kids who were most at risk to join gangs.
The group encouraged communication between schools and law enforcement officials in order to determine the right grade level to target with their anti-gang efforts. They learned that students coming into the ninth grade were often already affiliated with gangs, and some had years of experience by that time. So the coalition decided to target sixth to eighth graders. Their first major project was to host a daylong youth conference for these students.
Reverend Doctor Zaki L. Zaki, pastor of the East Side United Methodist Church–which is another member of the coalition–worked closely with the nurses in organizing the conference. “We started setting up dialogue groups,” he recalls. “We met with school principals and sent them applications to enroll students. We specifically asked them to invite students who have a history of violating the [school discipline] code.”
The first conference, held during a regular school day, was attended by just under 200 students. SECAGI presented speakers from law enforcement agencies, hosted workshops, facilitated discussion groups and served lunch. “It was very successful,” Rev. Zaki reports. “Some [students] confessed that they are active in gangs, which is quite a confession to make.” Others students spoke of their parents’ or grandparents’ involvement in gangs.
“[Having the participation of] a broad consortium of groups actually helps recreate a sense of community that the youths need and that gangs give the illusion of providing,” Rev. Zaki continues. “One of our challenges is the fact that there’s an intergenerational divide within many communities, including ours.” This divide, he says, makes it more difficult for youths to relate to older residents in the community, and vice versa.
In Southeast Chicago, the generation gap is exacerbated by the fact that there are ethnic tensions in the area as well. This part of the city was once populated mainly by people of Eastern European and Central European descent. More recently, Mexican immigrants settled in the community, followed by African immigrants, Asians and African Americans. “The area around the east side is predominantly Hispanic,” says Ramirez, “with the south side having a more mixed population.”
In addition, the area’s economy has had a difficult time recovering after once prominent steel mills closed a few decades ago. These hardships have increased tensions in the entire community.
The consortium is making inroads into healing these tensions by focusing on the community’s youth. “Three years ago we purchased what used to be a union hall and we converted it into a youth and community center. We call it The Zone,” says Rev. Zaki, who serves as chairman of The Zone’s board of directors. He works with health care professionals and other community leaders to hold a special program at The Zone called Youth Night.
Kids from across the community attend these events. “It typically starts at 6 p.m. and ends at 10 p.m.,” says Rev. Zaki. The program offers the usual fun activities: dances, sports tournaments and entertainment. However, there is also a motivational speaker to address issues like dating violence, gang violence and drugs.
Introducing Kids to Health Careers
All of these efforts have yielded positive results, and Ramirez is happy to see how her work with SECAGI and HSC has affected her community. In a more recent HSC survey, students indicated that they are learning the downside of gangs. The nurses are gaining better access to high-risk kids and are providing them with health education.
Moreno is also pleased with the results, including the fact that more at-risk youths are now able to find adequate health care. “We don’t address them as gang members,” she says, explaining that she and her colleagues instead address each patient as an individual. While Moreno does not work directly with programs that help students leave an active gang life, she does have an extensive referral network. “We work with anti-gang agencies and the police,” she explains. “We play a part in helping [gang members find alternatives].”
The nurses have also discovered another upside to making medical care more accessible to these kids: It exposes them to the possibility of pursuing health care careers. Because many of the local medical centers in the coalition have racially and ethnically diverse staff, the students see health care workers “who look like them,” Moreno says.
Chicago Family Health Center regularly hosts a Health Career Day, which gives students the opportunity to explore the full spectrum of possible health care professions besides just doctors and nurses. “They learn that ‘I can be a medical assistant’ or ‘I can be a phlebotomist,’” says Moreno. The coalition also works with organizations that offer scholarships to encourage more Latino and Latina students to go into nursing.
The nurses’ efforts have also helped increase the overall community’s awareness of healthy behaviors and lifestyles. According to Ramirez, “Four years ago, out of 28 area grocery stores, only eight were selling vegetables and fruit!” In addition, most of the restaurants in the area carried fried foods, but only two had salads on the menu. “Now, everybody offers some type of salad,” she says.
The community is also growing some of its own healthy food. Two city lots have been developed into a community farm with a vegetable garden. Although it is located in one of the toughest sections of the district, it has never been vandalized. “People have been able to work together,” says Ramirez.
Advice for Others
What advice does Ramirez have for other nurses in urban areas who see a similar need for anti-gang initiatives in their communities? Her number one recommendation is to partner with other local health care facilities, social service agencies, the police and the schools. “It has to be a coalition,” she emphasizes.
Pooling resources with a number of other organizations can also help with another challenging area: obtaining funding for programs and services. Ramirez helped write the grant to fund the Healthy South Chicago Coalition, then applied for her job there. However, the Southeast Chicago Anti-Gang Initiative operates with an all-volunteer staff. “The agencies have picked up the parts that they can,” says Ramirez. For example, one community resource center is able to offer free pregnancy tests.
Nurses are also ideally positioned to be proactive in looking for additional solutions, Ramirez believes. “If you’re a nurse in a health care setting, there are things you can do to open up the doors and be welcoming to the high-risk youth population,” she explains. For example, this could include encouraging young people to come back to your facility for regular visits, offering information on where to find additional health care options and encouraging them to pass the information on to their family members and friends.
Ramirez advises nurses to identify young patients who might be recruited by gangs and then find ways to reach out and offer alternatives. This is where a coalition approach will be helpful. “There might be a church that’s already working with them,” she points out.
Rev. Zaki agrees. “I feel this is the main strength of our initiative,” he says. “Where my competency and strength ends is exactly where somebody else picks up.” And who better to be that “somebody” than a neighborhood nurse?
Successfully entering and completing a nursing program can be a daunting task for any student. But students of color often face additional challenges and barriers that white students do not—for example, lack of financial aid, inflexible admissions policies, a greater burden of family responsibilities and feelings of isolation.
While the obstacles experienced by students of color are well documented in the nursing literature, there is much less information available about the “survival skills” and strategies these students have used to successfully overcome those obstacles. Although the literature includes some older studies focusing on success strategies that American Indian and Latina nursing students found to be useful, there is very little currently being written about what today’s students of color can do to be successful as they plot a course through the process of obtaining their nursing education.
Why is so important for underrepresented students of color to not just get accepted into nursing programs but to succeed in them? The demographics of the United States are changing dramatically and rapidly. By the year 2050, 20% of the U.S. population will be foreign born, and Caucasians will no longer be the majority. As the country’s racial, ethnic and cultural demographics change, nursing has a responsibility to change with them so that the profession fully reflects the patient population it serves. Furthermore, if nursing is to retain its reputation as a profession that advocates for the underserved, then it must also advocate for the fair representation of people of color in the nursing workforce.
Latinos are the fastest-growing minority group in the U.S., yet they are severely underrepresented in the current RN population. What are the most significant institutional, personal and cultural obstacles Latino/a students face in nursing school? What assets and strategies can help them surmount these obstacles and complete their nursing programs? What can nursing school faculty and administrators do to create a more equitable educational experience for students of color and help ensure their success as they pursue their dreams of becoming registered nurses?
As a nurse researcher with a strong interest in exploring these questions, I conducted a study that used critical ethnography to examine how Latina students who were in their last year of an RN program or had recently graduated as RNs managed to successfully complete an associate degree or bachelor’s degree nursing program. Six nursing students and seven RN graduates from various schools participated in the study, which was conducted using open-ended interviews and focus groups. The participants were asked to describe their experiences in nursing school, focusing on obstacles, assets, coping strategies and how power was used in the nursing program they attended.
It is not surprising that the study participants cited many obstacles encountered while pursuing their nursing degrees. These included lack of multicultural understanding at the institutional level, hostility and lack of cultural awareness in nursing faculty, pressure to give up their Latino culture, inflexibility within the nursing program, unwritten “rules” of nursing education and a climate of competitiveness that was encouraged by the faculty.
The participants also talked about how family responsibilities created a dilemma for them. They had to push against the current of cultural expectations of women and deal with the day-to-day issues of childcare and other family obligations. This group of Latina students and RN graduates were not willing to abandon their families to get an education. Instead, they chose to find ways to maintain both family and school responsibilities, which was a difficult task to accomplish.
One of the most frequently mentioned obstacles was racism. This is noteworthy because racism in nursing school is rarely discussed or studied. It is widely perceived as a problem that existed in the past but has been eliminated today. Yet, racism—on the part of both classmates and faculty–was cited often in the interviews. For example, Latina students who spoke with accents commented that they felt they were being treated as less intelligent than other students. Many participants described being told by instructors that they were less capable than white students. As a system of advantage and disadvantage based on skin color and ethnicity, the effects of racism were felt by every participant in the study.
Perhaps even more insidious was the systemic racism they faced, which was evident in the number of blockades they experienced at the institutional level. Some of the Latina students reported being given different admissions information than that given to white students, and they were frequently encouraged by high school or college counselors to become nursing assistants rather than RNs.
While the participants had been able to develop strategies for overcoming a number of obstacles, they had difficulty naming specific strategies to deal with racism. They often described feeling that they should have responded more strongly to racist incidents or policies. Yet they feared that if they spoke out about racism they would be punished.
Sadly, when asked about assets that helped them overcome obstacles, the study participants were unable to cite many examples of institutional support from the nursing programs they attended. A few spoke of the “one” instructor who was supportive, but this was the exception rather than the norm for these students and RNs.
Therefore, they found support through other channels. Their own goals and dreams served as a compass that kept them on course as they headed toward their goal of becoming RNs. Interviewees also cited a desire to give back to their communities, and to help the Latino community to move ahead, as incentives that helped them persevere. Support from peers and being unified as a group were major assets the participants credited for their success.
Latino culture played a particularly important role in the coping strategies of these students and RNs. Every participant commented that they had to be a “cabezona”–meaning stubborn or determined–to make it through. They described this characteristic as a cultural asset that was a part of their Latino history and identity. They were proud to be Latina, proud of their heritage and they wanted to make their families and communities proud of them.
This cultural pride served as a powerful force that helped them swim against the tide of obstacles and racism they so often encountered. Perhaps because of their individual personalities, but most likely because of their culture, this group described how they actively resisted as a means of being successful. They resisted cultural norms that could hold them back. And by holding onto family ties and finding ways to integrate their Latino culture into their education, they resisted pressure to desert their cultural heritage.
Strategies for Students
Although all of the participants in this research study were Latinas, the findings revealed many strategies for success in nursing school that are applicable to all students of color. For example:
When you are applying to or entering a nursing program, identify students of color who are ahead of you in the program. Ask for their advice about what to watch for and how they navigated the program. These students can serve as cultural brokers and explain the expectations that nursing instructors may have.
Learn the unwritten “rules” of majority-dominated academia. This does not necessarily mean that you have to follow all of them, but awareness of these rules will help you decide when to resist and when to conform.
Form support groups. Study together, share information and stand up together against injustices.
Enlist additional support from family members. Maybe they are willing to baby-sit, cook some meals or help out in other ways so you can devote more time to your studies.
Tap into your cultural heritage. If stubbornness and determination are the norm in your culture, then don’t give up!
Acknowledge that racism exists, and that sometimes people who participate in it may not even realize they are doing so. This does not diminish the injustice, but as opportunities arise, educate your peers. Above all, do not let instances of racism define who you are. You have a great deal to offer the nursing profession!
How Faculty Can Help
Nursing educators who want to create a more equitable educational system for students of color must abandon the notion that treating all students the same or being “colorblind” is a solution to the problems of racism or student failure. As is true in the health care workplace, when failure occurs it is often the result of a system failure, not an individual one.
Based on the insights gained from the study participants, here are some additional recommendations for how faculty members can increase their understanding of the issues nursing students of color face and how they can partner with these students to help remove barriers to their success:
• Examine the curriculum to determine whether it is inclusive and relevant to all students or if it is centered on the care of white patients while excluding the needs of patients of color. It is imperative to bring racial, ethnic and cultural diversity into the nursing curriculum, such as teaching students about differences in skin, hair, dietary preferences, etc.
Rather than having a “culture day,” thread the concepts of cultural diversity and its importance in health care throughout the curriculum.
Encourage students of color to hold on to their cultures, both as assets for their own success and as assets that will enrich the nursing profession. Acknowledge, respect and build on these students’ cultural knowledge, beliefs and experiences.
Recognize that while curriculum content that includes information about cultural differences, health disparities and culturally sensitive health care is essential, students remain underserved if the curriculum delivery is not culturally sensitive as well.
Learn the personal stories of your students. Are there very young students? Older students? Students of color? Male students? Ask yourself: “What unique assets does this student bring to nursing?”
Be aware that students have different learning styles, based on factors such as age, culture and personality. Offer to help students. Often, students of color are reluctant to ask for help because they are uncertain about how others will perceive them, but they appreciate help when it is offered respectfully.
Flexibility is a must, both in the admissions process and in the classroom. Is your nursing program’s admissions policy based solely on GPA? Consider revising it to give more weight to students’ personal assets and experiences. Do your class times and days reflect a student-centered or a faculty-centered approach? Faculty and administrators must ask themselves who benefits from the policies and norms that are currently in place. Do they promote or inhibit student success?
Nursing programs are notorious for having a competitive atmosphere. But keep in mind that some students may come from cultures where working together for the benefit of the group—rather than striving for individual success—is the norm. These students will not thrive in a highly competitive environment. Furthermore, fostering an atmosphere of cooperation and collaboration in the classroom more closely reflects what will be required of RN graduates when they enter the workforce.
Mentor students and help them understand the unique culture that is nursing.
Learn to recognize how racism is manifested institutionally as well as individually. There are many anti-racism curricula that can be incorporated into nursing education. Be a role model by teaching white students to be anti-racism advocates and by speaking out against racism yourself. Never, ever tolerate negative comments about an individual’s race, ethnicity, gender, religion, sexual orientation, disability or any other characteristic that is not the majority. Learn to talk openly about discrimination and bias and how they affect health equity. Encourage all students to consider other viewpoints than their own.
Understand that many students may have strong family ties and responsibilities that they must balance with their academic responsibilities. Educators often argue that privacy laws make it impossible to engage with a student’s culture of family. Still, it is possible to find ways to include family in the nursing school experience. Invite family members to student presentations; include family in end-of-term celebrations. This sends a clear message that you value your students and acknowledge that they have their own lives outside the walls of the classroom, and that retaining these aspects of their lives is important.
In conclusion, there are many ways that students of color and faculty members, both individually and together, can employ strategies and engage resources to ensure that all students have an equal opportunity to successfully earn a nursing degree. Just imagine what could happen if every student of color was able to achieve his or her dream of becoming an RN. In today’s increasingly multicultural America, imagine what a difference this will make for the nursing profession, for health care and for improving the health of the medically underserved.
Last summer I enjoyed the honor and great privilege of presenting a poster session with my former colleague Anderson Torres, PhD, LCSW-R, at the 34th Annual Conference of the National Association of Hispanic Nurses (NAHN). The conference was held in San Antonio, Texas—a city known for good Southwestern food, intoxicating Mariachi and Tex-Mex music and warm, engaging Texan hospitality.
NAHN, founded by Dr. Ildaura Murillo-Rohde in 1975, is a professional nursing association committed to improving the health of Hispanic patients and communities and to increasing educational, professional and economic opportunities for Hispanic nurses. Although he is a social worker, not a nurse, Anderson was one of the core group members who helped in revitalizing and expanding our local NAHN chapter here in New York City.
The subject of our poster presentation was the correlation between diabetes and Alzheimer’s disease in the Hispanic community. Alzheimer’s is a topic close to Anderson’s heart, since his abuela (grandmother) suffered from this heartbreaking condition. The Alzheimer’s Association defines it as an irreversible, progressive disease that slowly destroys memory, reasoning skills and, eventually, the ability to carry out the simplest tasks of daily living. Our presentation focused on the effects of diabetes and Alzheimer’s disease among Hispanics and on the role diabetes plays in increasing the risk of dementia in this vulnerable populations. We also presented culturally competent, patient-centered strategies that our Hispanic community can implement in real-life settings to promote healthy behavior change and encourage patients to take control of their health.
Before I describe our presentation in detail, let me explain that for nearly 40 years I have served as a home care nurse with the Visiting Nurse Service of New York (VNSNY), which was founded by Lillian D. Wald in 1893. We VNSNY nurses collaborate with teammates in other disciplines, such as medicine and social work, to offer home health services—ranging from infant care and acute care to long-term rehabilitation and hospice care—to a highly diverse patient population throughout New York City and two suburban counties.
About a quarter of VNSNY patients are non-English-speaking, including the many Spanish-speaking patients that I care for in the Washington Heights neighborhood of Northern Manhattan. To offer a broader perspective, I am one of about 4,500 Hispanic nurses in a city estimated to have more than 2.5 million Hispanic residents. Working for VNSNY makes me a member of the largest group of Spanish-speaking Hispanic health care providers in our metropolitan area. For the record, VNSNY defines Hispanics as persons who come from Mexican, Puerto Rican, Cuban, Central or South American, or other Spanish cultures. The term “Latino” encompasses people from Brazilian, Asian and African cultures as well.
In 2008, VNSNY was honored with the NAHN New York City Chapter’s first-ever Institutional Award, recognizing our agency for its efforts to “raise awareness of and address health care disparities and increase diversity in nursing” and for being a true champion and outspoken advocate for Hispanic communities in New York City.
Culture and Alzheimer’s
Anderson began his portion of our presentation by noting that the number of U.S. residents aged 65 or older is projected to increase to 12.5 million by 2050, while those aged 85 or older are expected to number 2.6 million at mid century. As the average age rises, the risk of contracting Alzheimer’s disease rises concomitantly. Furthermore, Anderson pointed out, the Alzheimer’s Association reports that the number of Hispanics/Latinos in the U.S. with Alzheimer’s disease and related dementias could increase by more than sixfold by mid century—to as many as 1.3 million.
“The lack of Alzheimer’s resource information in the Spanish language has become a serious barrier to meeting diagnostic and cultural needs and obtaining appropriate services for Hispanic patients suffering from this disease in New York City,” said Anderson, who co-founded the Latino Alzheimer’s Coalition of New York, Inc. (LAC-NY) to address issues related to access, information, advocacy and research.
“Alzheimer’s disease exerts a direct impact on the emotions and behaviors of both diagnosed individuals and their [family] caregivers,” Anderson continued, adding that Alzheimer’s disease is a shared family experience that can have a devastating effect on Hispanic patients’ extended family systems. He noted that studies of Alzheimer’s caregivers have identified increased depression, anxiety, use of psychotropic medications and a negative impact on their work and social lives.
While research is only beginning to uncover the impact of Alzheimer’s disease among Hispanics, the Alzheimer’s Association suggests that this population may be at greater risk for dementia than other ethnic or racial groups, Anderson said. In 2005 the association reported that cardiovascular risk factors such as diabetes and hypertension—which contribute to higher rates of cognitive decline with aging—are also more prevalent among Hispanics.
Patients with Alzheimer’s disease deteriorate and debilitate, requiring supervision and controlled environments to help them remain safe. “Many Hispanic families include working adults who are unable to provide Alzheimer’s patients with the level of care needed in a traditional home setting,” Anderson said. “In spite of their cultural viewpoint that nursing homes are uncaring environments [and that it is the family’s responsibility to care for elders], more Hispanic families find themselves facing the difficult choice of whether to institutionalize their parents in nursing homes.
Therefore, he added, nursing home facilities need to address the needs of Hispanic residents with Alzheimer’s disease and develop a model for providing culturally sensitive living environments and culturally and linguistically competent care. Anderson noted that knowledge and understanding of Hispanic cultural concepts, such as traditional perceptions of illness and intervention, is the key to providing a culturally sensitive approach to care delivery. In addition, health care providers who serve these patients must be trained in cultural nuances, cultural competency, symptom reduction, caregiver receptiveness, engagement in outreach programs and psycho-educational services.
Anderson concluded by presenting a successful best-practice model he developed, which focuses on providing empowerment and improving the quality of life for Hispanic Alzheimer’s patients and their families. His model combines culturally relevant videos and Spanish-language content with a multidisciplinary approach to care delivery that brings together teams of la familia (family), physicians, nurses, social workers, caregivers and informal networks.
As a supplement to this model, Anderson provides cultural competence training to health care providers who serve Hispanic/Latino patients living with Alzheimer’s disease and its clinical co-morbidities, including diabetes. He will soon begin working with the American Diabetes Association as the New York City chair for the ADA’s Por Tu Familia (For your Family) initiative, which will target boroughs with a high percentage of Hispanics/Latinos with diabetes.
The Alzheimer’s/Diabetes Connection
Hispanics also suffer one of the highest rates of diabetes in the United States. In New York City, the prevalence of diabetes among Hispanics is more than 50% higher than average. According to the findings of a recent study conducted by the National Institute on Aging (NIA) under the auspices of the National Institutes of Health’s Intramural Research Program, diabetes can impair a patient’s cognitive health. The study demonstrated that poorly controlled diabetes with high cortisol production causes high levels of stress.
Furthermore, the Alzheimer’s Association has published findings that support the correlation between diabetes, hypertension, obesity and Alzheimer’s disease. When we look at the Hispanic/Latino community, we find a high incidence of these conditions along with high rates of cardiovascular disease. This all contributes to a high risk factor for Alzheimer’s in the Hispanic population.
My portion of our poster presentation was intended to raise awareness of these research findings—and of the importance of controlling diabetes. As a New Yorker whose family emigrated from the mountains of Puerto Rico, I sometimes share with patients that my own mother and father died very young, and that their diet played a role in their heart disease and diabetes.
We VNSNY nurses help diabetes patients with every aspect of managing their disease, so that they can feel better and reduce the risks of long-term health consequences. One patient education tool we have found helpful is our agency’s Diabetes and Meal Planning Guide, which teaches diabetics to incorporate healthy lifestyle modifications, like meal planning and portion control, to help control their blood sugar.
One of my VNSNY colleagues, clinical nurse specialist and diabetes educator Margery Kirsch, MS, RN, CDE, describes the history of our agency’s success in using this tool. “It all started with [the late] Elaine Edelstein, MSN, RN, CDE, who was the VNSNY’s first diabetes clinical nurse specialist,” she explains. “Recognizing the need for a specialized nutrition teaching tool for Spanish-speaking patients in the five boroughs of New York City, in 1996 Elaine developed a guide that showed pictures of correctly portioned, commonly eaten foods, labeling them in both English and Spanish.
“Initially, the tool consisted of food-portion pictures on 4” x 6” laminated cards, attached to a key ring. This format, called Meals on Cards, proved very popular with staff and patients alike,” Margery goes on to say. “Two years later, Elaine expanded the format to a full-size 8 x 11-inch spiral bound book that also included the Food Pyramid and [sample low-calorie meal plans]. This book, which is still one of the most widely used teaching tools at VNSNY, received the prestigious Nutrition Education Award from the American Association of Diabetes Educators. We fondly remember Elaine, who passed away in 2005. Her patient teaching guide makes a fitting memorial to her meaningful work to improve the lives of patients with diabetes.”
Editor’s Note:Anderson Torres, PhD, LCSW-R, director of health initiatives at Bon Secours New York Health System, also contributed to this article.
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