Nurses vs. HIV/AIDS Disparities: Interventions that Work
Editors Note: Part two of this series, showcasing the innovative work of minority nurses who have created successful solutions for improving HIV/AIDS treatment and prevention in communities of color, appeared in the Spring 2007 issue of Minority Nurse.
“Whether we know it or not, every nurse is an HIV nurse,” claims Hazel Jones-Parker of Baltimore. “You can get into communication with various groups and see impact—there are so many different levels for the nurse once you find your passion,” attests Sheldon Fields of Rochester, N.Y. “If you want to see a place where you can make a difference in a short period of time, this is the place,” says Yvonne Washington Turay of St. Croix, U.S. Virgin Islands.
These are minority nurses speaking—specifically, minority nurses who are working on the front lines of HIV/AIDS research, treatment and prevention in communities of color. They are talking about people often left behind in the battle against HIV/AIDS: racial and ethnic minorities, women, limited-English-speaking immigrants, people who live in low-income, medically underserved communities. This year, as the world marks the 25th anniversary of the discovery of the HIV/AIDS epidemic, looming ahead is the year 2010—the date America’s national Healthy People agenda has set for eliminating racial and ethnic disparities in HIV/AIDS care.
But while mindful of the urgency, these nurses aren’t working to close the HIV/AIDS gap “because they have to—they’re doing it because they genuinely want to and have the passion and commitment to care for this patient population,” observes Josepha Campinha-Bacote, PhD, MAR, APRN, BC, CNS, CTN, FAAN, a nurse-scholar of Cape Verdean descent and president of Transcultural C.A.R.E. Associates in Cincinnati. Campinha-Bacote has developed a cultural competency model that has been adopted by many nurse researchers as well as organizations such as the National Minority AIDS Education and Training Center (NMAETC).1
Minority nurses don’t have to go very far to find this “hidden epidemic.” It’s turning up every day in primary care settings and emergency rooms. “[We see it all the time],” reports Yvonne Washington Turay, MSN, FNP, APRN-BC, a nurse practitioner who works for the U.S. Virgin Islands Department of Health’s STD/HIV/TB Program, which cares for 95% of the burgeoning HIV/AIDS cases on the three islands of St. Thomas, St. Croix and St. John.
Recounts Turay: “I have a patient, married 35 years to the same man. She’d been with him from the age of 18 and has four children. One day he suddenly begged his wife for forgiveness. She didn’t know why, and he didn’t say. Two years later he died—of AIDS. Now she’s taking retrovirals for the infection she got from him. She’s doing all right now, but stories like this make me cry.”
Avoiding Labels, Making Connections
Sheldon D. Fields, PhD, APRN, BC, FNP, AACRN, FNAP, FAANP, RN, an assistant professor at the University of Rochester School of Nursing and a national director-at-large of the Association of Nurses in AIDS Care (ANAC), is a researcher whose work focuses on MSM (men having sex with men) of color. This group is sometimes described as being on the down low (DL)—men who have sex with both men and women but do not think of themselves as homosexual or bisexual.
“But hold that term, please,” urges Fields, who is of African American and Latino descent. “The DL label has been overused and misapplied. It’s pathologizing the bisexual behavior of black and Latino men in a way that would never be used to characterize the same behavior in white men.”
Fields sees promise in his modification of the HIV Knowledge Questionnaire (HIV-KQ) for use with young men of color who have sex with men (YMCSM).2 His version adds three items related to this group’s sexual practices and deletes three other items (two specific to women). “It needs to be further tested, but the focus group methods we used are definitely sound for revising other such instruments to make them more culturally appropriate,” he advises.
Fields, who recently completed a three-year visiting professorship as part of the Collaborative HIV-Prevention Research in Minority Communities Program at the Center for AIDS Prevention Studies at the University of California, San Francisco, currently serves as principal investigator of the MOCHA (Men of Color Health Awareness) Project, Inc.’s Minority Peer Initiative, a Rochester-based collaborative designed to engage HIV-positive young MSM of color (ages 13-24). Commonly known as Project YEAH (Youth Empowerment Around HIV), this five-year Special Projects of National Significance (SPNS) program funded by HRSA’s HIV/AIDS Bureau will continue until 2009.
The overall purpose of the project is to increase HIV testing among YMCSM and get those who test HIV-positive into treatment. The project has a special emphasis on Internet outreach that targets college-age YMCSM. It also provides support programs such as a youth drop-in center. In addition, it includes a group-level HIV prevention intervention called Young Men Young Voices, adapted from Many Men Many Voices (3MV), a project that is part of the CDC’s Diffusion of Effective Behavioral Interventions (DEBI) program.
Fields, who is also a family nurse practitioner with an active clinical practice in HIV primary health care, strongly believes that “the [biggest] problem for people of color seeking care for HIV/AIDS is that they need to sit across from a clinician who looks like them. Something about connecting with another person of color can make a difference. For instance, I’ve been told by many of my MSM of color patients that they would never say things to a white care provider that they would admit to me.”
Some AIDS “explosions,” as in the U.S. Virgin Islands, seem to parallel an expansion of tourism and “sexual tourism.” But whatever the causes behind the alarmingly high HIV/AIDS rates in this tiny U.S. territory—whose population is primarily black (Afro-Caribbean) and Latino—experts like Turay agree that stigma is a major barrier to prevention, testing and treatment.
“One reason is our culture, our people,” explains Turay, an African American from New York City who arrived in the islands as a family nurse practitioner six years ago. “We are very proud of our cultural heritage and so we tend to cling to things [that are not in the best interests of our health]—for example, men who cheat [on their wives] but refuse to wear condoms. We don’t feel empowered even with all the evidence.” The stigma of HIV/AIDS prevents people from talking about it among themselves, from talking to their pastors and from getting tested.
The stigma even reaches into the health care profession, Turay observes. “There are no doctors on this island who want to deal with AIDS. Instead, they send patients over to our clinic.”
To cut through this barrier, she takes every opportunity to be a catalyst, starting with the young women who are her colleagues at the clinic. And she has an open-door policy. “We talk about the cultural problems,” she says. “I tell them: ‘Don’t just look at the patient—look at yourself. Do you think you are exempt?’ I ask them to get tested and warn them about their boyfriends who have been in jail and thus bring an increased risk of spreading the disease heterosexually.”
Turay believes she has made the greatest inroads through teaching. “The physicians are the last ones to come [to her education sessions], but the nurses are responding very, very well.” One reason for the difference is continuing education requirements: Nurses need five contact hours on HIV/AIDS while doctors have no requirements. Turay feels she has broadened her students’ assessment skills, getting them to recognize the possibility of HIV infection underlying subtle signs and symptoms, such as an abnormal Pap test.
In taking her educational offerings to the community, Turay has been helped by her Pentecostal pastor, the Reverend Toi A. Barbel. “She was very instrumental in getting pastors educated, and now we get representatives from many denominations.” Barbel, who is senior pastor of the International Gospel Center of St. Thomas and also a legislator, is the Caribbean representative in The Balm in Gilead, a large international collaborative of mainly black churches and some mosques working together to address the AIDS crisis in the black community.
“Typically we give a prayer breakfast and present HIV 101 basics,” says Barbel. Turay is present as a service provider, doing the counseling and competency training. “This venue has given us a chance to produce more user-friendly versions of CDC policies that are more suitable for our community,” Barbel adds.
“Being a woman of faith helps,” says Turay. “I am very visible in the community. I have built a rapport with my patients and they feel free to talk. We are a small community—and that works to our advantage. I consider myself a public servant.”
Overcoming Language Barriers
Skilful management of language barriers underlies the successful results of “¡Cuidate!” (Take Care of Yourself!), the first randomized controlled trial of a culturally tailored HIV risk reduction program for Hispanic adolescents. Funded by the National Institute of Nursing Research (NINR), the study was directed by Antonia M. Villarruel, PhD, RN, FAAN, a professor at the University of Michigan School of Nursing, Division of Health Promotion and Risk Reduction Programs, and principal investigator at the NINR-funded MESA Center for Health Disparities (2002-2007).
“The intervention’s positive effects on Latino adolescents who were Spanish-language dominant or who were sexually inexperienced shows the importance of tailoring our approaches to specific populations,” says Villarruel. “It suggests we can reverse some disturbing trends among Latino teens. ¡Cuidate! has caught on: Latino teens are reducing risky activity a year after prevention training. But much more research is needed with Latino adolescents to [fully] address the HIV/AIDS disparities.”
Villarruel, a past president of the National Association of Hispanic Nurses and vice president of the National Coalition of Ethnic Minority Nurse Associations (NCEMNA), collaborated with two African American behavioral theory experts: Loretta Sweet Jemmott, PhD, RN, FAAN, co-director of the University of Pennsylvania School of Nursing’s Center for Health Disparities Research, and John B. Jemmott III, PhD, professor at Penn’s Annenberg School of Communication. The study involved 553 male and female teens who self- identified as Hispanic, recruited from three Northeast Philadelphia high schools and community-based organizations. More than 80% of the participants were Puerto Rican, and nearly half were born outside the mainland U.S. Over 40% of the teens reported having engaged in sexual intercourse at least once, with the first sexual experience occurring at an average age of 13.5 years.
The teenagers were divided into two groups. One group received a general health promotion program; the other received the culturally tailored HIV intervention program, which emphasized both abstinence and condom use as culturally accepted and effective methods to prevent STDs such as HIV. “The study demonstrates that addressing both abstinence and condom use within a single curriculum can affect both behaviors,” Villarruel and her colleagues concluded.
In Asian and Pacific Islander (API) communities, a combination of language barriers, stigma, reluctance to talk about sexual activity and drug use, and a stereotyped reputation of being a “model minority” have created the perception that the AIDS epidemic has not seriously affected this population. But experts like Anthony S. Fauci, MD, director of the National Institute of Allergy and Infectious Diseases (NIAID), believe the reality is an underreporting “silent population at risk” and not a truly low incidence of HIV and AIDS infection.
To help fill this population’s unmet need for culturally sensitive treatment and prevention, HRSA has provided funding to organizations like the Asian and Pacific Islander Coalition on HIV/AIDS (APICHA) in New York City (to evaluate multilingual/multicultural case management services for Asian Americans living with HIV) and the Asian and Pacific Islander Wellness Center in San Francisco (to develop a manual for providers serving Asian Americans living with HIV). The Wellness Center is also the lead organization in The Banyan Tree Project, a CDC-funded national campaign which has developed tools and programs to increase awareness of HIV/AIDS prevention, testing and care in the API community.
Niru Somasundaram, BSN, RN, the sole staff nurse in APICHA’s HIV Primary Care Clinic, says she frequently encounters all these barriers and more when doing patient assessments. “The biggest barriers depend on class status and [the length of time an API immigrant has lived in the U.S.], but reluctance to talk about sex might hold across the board. We have to do a lot of drawing out.”
Somasundaram, a native of Chennai (formerly Madras), India, advises nurses working with API patients to “be aware of language differences, which may vary between men and women. And be aware of stereotypes, such as the perception of APIs as nonsexual.” In reality, she says, “[our clinic] sees a lot of very isolated and lonely gay men without much of a support system who engage in high-risk behavior.” Some are sex workers in Asia and/or the U.S. “All the coming and going, often two times a year, maybe getting medications in Shanghai, or moving elsewhere in the U.S. to seek better jobs, makes monitoring very hard,” she notes.
But once the barriers come down and the patients begin to open up, APICHA has the resources to get them promptly into treatment and support programs. The APICHA clinic has language interpretation services for Mandarin, Cantonese, Japanese, Tagalog, Hindi and Bengali speakers. “We develop culturally sensitive approaches—for instance, asking through an interpreter in Chinese, ‘show me how you put on a condom,’” says Somasundaram.
“I’ve always been drawn to non-mainstream health care for the marginalized,” she adds, “so what’s most rewarding for me is to have my newly immigrated patients come to terms with their infection and come back to me for details on medication adherence and getting additional support.”
Family- and Faith-Based Outreach
The bond between mothers and their teenage daughters in high-risk communities is the focus of work being done by Barbara L. Dancy, PhD, RN, a professor at the University of Illinois at Chicago (UIC) College of Nursing. With funding from the National Institute for Mental Health, Dancy has developed a Mother/Daughter HIV Risk Reduction (MDRR) intervention. “I had worked with low-income mothers aged 20-45 in another risk reduction project,” she says. “These mothers wanted to know how they could teach their children to protect themselves from getting HIV.”
Mothers want to give good information to their daughters and support them in staying abstinent, but they lack confidence and are afraid of not being to able to answer their daughters’ questions. “This is definitely a barrier that nurses can overcome,” asserts Dancy. The MDRR shows that mothers can be trained to be their daughters’ primary HIV educators, and that boosting their daughters’ sense of empowerment and intention to refuse sex helps reduce the teens’ level of sexual activity.
The 100-page MDRR program packet is full of culturally sensitive exercises, games and “behavioral rehearsal” life skills tools—e.g., the SODAS Framework (see sidebar)—and useful ways of presenting basic HIV facts. SODAS, a problem-solving tool, was adapted from the work of Schinke et al.3 “Active involvement of mothers is cost-effective and should be integrated into HIV intervention programs,” this earlier study concluded.
Like Yvonne Turay in the Virgin Islands, other African American nurses have looked to churches as both a spiritual support and a trustworthy venue for conducting AIDS-prevention outreach in their communities. “For me, HIV care is not only a professional calling. It also involves a personal message you take to churches and colleagues there,” says Hazel Jones-Parker.
In addition to drawing support for her work from her own Baptist church, Jones-Parker joins other health care professionals in Baltimore’s STAR (Sisters Together and Reaching), a Christian-based, nonprofit community organization that provides spiritual and emotional support to HIV-infected and affected people and their families. STAR is a member of the Balm in Gilead collaborative network and receives federal and university funding to send a van with free HIV testing services to churches, homeless shelters and other community sites.
Derek Spencer, CRNP, NP—who, like Jones-Parker, is a nurse practitioner at the University of Maryland Institute of Human Virology (IHV)—adds a spiritual component to the comprehensive family and peer support in the community-based treatment compliance model he directs, the JACQUES Initiative. Designed for HIV patients who need help following their complex multiple-drug medication regimes, the program pairs patients with health care providers, family members, friends or other patients who’ve been successful at managing a rigorous HIV treatment plan.
“In March 2003 we held a retreat to address our high (70%) rate of patient failure in therapy,” Spencer explains. “We came up with a three-part program model that has had a big impact. Now 85% to 91% of patients are maintaining the integrity of the initial treatment.”
Now expanded as a national pilot program and also under testing in Kenya and Nigeria, the JACQUES Initiative model provides:
- Treatment preparation. Patients and family receive education on living successfully with AIDS and managing their treatment regimen. They need to be prepared “to take medication every day for the rest of their lives, which no one has been asked to do in history,” notes Spencer.
- Family and peer support workshops. “I or another provider co-facilitate these with another person who has HIV. Seventy-five percent of our staff are living with HIV, but [the workshop participants don’t know who’s who],” Spencer says. “Our three-to-four-hour workshops include HIV 101 facts, life skills [training] and patient support discussion groups.”
- Treatment support. Patients choose from five options: direct observation therapy (DOT) every day, three-times-weekly observed therapy, support by a treatment coach, support by a treatment partner or buddy (someone else with HIV) and support by a care partner.
“In the patient-driven Saturday support group meetings,” says Spencer, “provider staff, family and patients all take ourselves together through [evangelist] Rick Warren’s The Purpose-Driven Life.” Warren’s Saddleback Church, based in Riverside, Calif., has become known nationally and internationally for the Disturbing Voices HIV/AIDS Conference it launched in November 2005, where Spencer and the IHV’s co-founder, Robert Redfield, MD, gave a workshop, “The Local Church Engaged in Prevention/Treatment/Care/Support.”
They called on churches to make up for their past failure in addressing the AIDS crisis and “hear from the experts how treatment support and medication adherence support can be done by the church transforming lives.” The Balm in Gilead has been operating in a similar way through its Black Church Training Institute for HIV/AIDS and Other Health Disparities.
Smaller faith-based organizations in the black community play a key role in the outreach efforts of Mildred Richardson, RN, executive director of Chicago’s South Haven Pregnancy Center, supported by the South Shore Ministerial Alliance. “Counseling became the love of my life when I discovered the difference it could make in helping individuals regain their emotional, physical and spiritual health,” she says.
Richardson’s facility, like other abortion alternatives centers, provides abstinence-only sex education, including information on STDs. But it presents the message on health risks and relationships through culturally competent and teen-friendly methods, such as role-playing with realistic resistance strategies.
“Ours was one of the first centers to go into the public schools with a prevention component designed to be part of a school’s mandatory health or physical education class,” says Richardson. “We are limited in providing our spiritual perspective in the schools, but we can supply brochures to direct the kids to our center for follow-up after school.” She and other professional staff also offer workshops at churches and ministerial conferences using role- playing and other behaviorally oriented approaches.
“We can’t be sure we’ve changed [the teens’] lifestyle yet,” she adds, “but they have flocked back to get more of the amazing facts about [HIV] risks.”
Drawing on Community Strengths
In Oklahoma, American Indian nurses and researchers are using the concept of community gatekeepers to help them investigate the importance of cultural traditions in teaching HIV/AIDS prevention in Native communities.
“A major barrier to improving care of American Indians is their past history of abuses in health care and research,” says Valerie Eschiti, MSN, CHTP, AHN-BC, RN, an assistant professor of nursing at the University of Oklahoma Health Sciences Center in Oklahoma City and a volunteer nursing instructor at the Comanche Nation College in Lawton, Oklahoma. This leads to a distrust of outsiders who wish to do health interventions or conduct research in Indian communities, she explains.
“But what has recently changed for the better,” continues Eschiti, who is of Cherokee ancestry, “is a growing awareness and exchange of information on how to approach American Indian people—honoring their cultures, involving them as active participants in the research and educational processes, and sharing knowledge with them in a respectful manner.”
Acknowledge the strengths of American Indian communities “and you will resolve health care disparities,” Eschiti predicts. She saw the success of this approach when she became a gatekeeper in the Comanche community for Dannette McIntosh, EdD, AASECT, who is now an education and training specialist with Planned Parenthood of Arkansas and Eastern Oklahoma.
McIntosh’s research for her doctorate was to determine what cultural preferences and learning strategies are important in providing HIV/AIDS-prevention education to American Indians in Oklahoma. “In Oklahoma, you have no way of telling how acculturated or traditional an American Indian is,” says McIntosh, who is of Muscogee (Creek) descent. “For my research I used 11 community gatekeepers who distributed and collected surveys representative of 44 tribes.”
McIntosh’s Circle of Learning Cultural Strategies Survey questionnaire was distributed at powwows, community centers, tribal health centers and health fairs, both on and off reservations. The gatekeepers were consulted ahead of time about the purpose of the research and had the opportunity to give feedback and provide input into the meaning of the data at the end of the study. Thus, these Indian community members were themselves participating in the research—a very important factor considering the abuses of their people by culturally disrespectful researchers in the past.
“Nurses can use the scale and questions we came up with to determine the level of traditionality with other Native groups,” says McIntosh. The questionnaire asks participants to rank on a scale of 0 to 10 how traditional they are—e.g., to what extent they participate in Indian ceremonies, speak or think in their tribal language and hold traditional beliefs and values. They are also asked how strongly they agree or disagree with statements like “I would pay more attention to HIV prevention if legends or stories were used” and “I think the Circle of Life (Medicine Wheel) is a good tool to use in HIV prevention.”
Engaging Nursing Students
Culture-specific storytelling has been put to effective use in the innovative SENORITAS education program for minority nursing students, which is being piloted at Florida International University’s School of Nursing in Miami under the direction of associate professor Sandra Gracia Jones, PhD, ARNP, ACRN, CS, BC, FAAN.
SENORITAS, which stands for Student Education Needed in Order to Reduce Infection and Transmission of AIDS/HIV and STDs, is funded by the CDC’s Office on Women’s Health (OWH). Part of the OWH’s national Prevention of HIV/AIDS among Young Women Attending Minority Institutions Program, SENORITAS is designed to increase knowledge, promote prevention and reduce the risk of HIV infection among minority women aged 18-25 attending Historically Black Colleges and Universities, Tribal Colleges and Universities, and Hispanic- Serving Institutions.
“We use a participatory action strategy in which we engage senior nursing students, who serve as HIV-prevention peer educators, to enhance the curriculum and teach the program to junior nursing students and then non-nursing students,” explains Jones, who is of Portuguese and Spanish descent. The nursing students commit to teaching 10 non-nursing students the two-hour core curriculum, called “Uno, Dos, Tres, Keeping It Safe: Amigas and Safer Sex, Miami-Style,” which Jones developed based on research with focus groups.
The program follows fictional young girls who grow up in Miami as best friends and then go off to different colleges. They get back together at Christmas and talk about college life, men, dating and sex. The peer counselors stop the story at key points to ask the student participants what they would advise if they were the girl’s friend (amiga). They also teach “condom negotiation,” using skills they have practiced in their training workshop.
“It was an eye-opener,” Natalia Ramirez, a Cuban-American junior nursing student, says enthusiastically of her first year in the SENORITAS program. Ramirez attended the SENORITAS class session and is now doing a research practicum with Jones. “I was shocked at the statistics for Hispanic females getting HIV through heterosexual sex,” she reports. “I thought presenting the messages through the novela (story) concept—two Hispanic girls playing with dolls and then growing up—was very effective and culturally relevant.” Ramirez helped Jones score and tabulate the research data from the classes, and in her senior year of nursing school she will work with Jones as a peer educator.
Multiple-award-winning behavioral science researcher Maithé Enriquez, PhD, ANP, RN, an assistant professor at the University of Missouri-Kansas City School of Nursing, recently returned from the NIH’s invitational Summer Institute, a two-week course focusing on the design and conducting of randomized clinical trials involving behavioral interventions. Enriquez, whose research focuses on the development of interventions to prevent and manage chronic illness in vulnerable populations, is also a practicing clinician at the Infectious Diseases Clinic at Truman Medical Center in Kansas City.
Among the 13 national HIV clinical trials for which she has been an investigator or sub-investigator is Strategies to Avoid Resistance (STAR). Designed to enhance patients’ readiness for HIV treatment adherence, STAR targets individuals who are considered the most difficult to reach. It has been successful in enhancing adherence among patients who previously failed an average of four HIV treatment regimens.
“We really need more interventions for Latinas,” asserts Enriquez, as she awaits word from the CDC, where her Project MAMAS (Mano A Mano Alcanzamos la Salud) is now in review for funding. Her proposal calls for collaborating with community agencies to deliver a gender-specific, culturally tailored group intervention in Spanish to HIV-positive Latinas and their male sexual partners in Missouri, Kansas and Oklahoma.
“We will use a participatory action research methodology to refine it,” she says. “It’s designed to increase sexual self-care behaviors—including abstinence, faithful monogamy and correct/consistent condom use—through four program components: informational and social support, relationship negotiation and communication skills training, sexual self-care behavior skills training and transcending culturally bound gender roles and barriers.”
Editor’s Note: In the Winter 2007 issue of Minority Nurse, we will examine the wide range of resources available to help nurses develop their own culturally competent interventions for closing the HIV/AIDS gap.
- Campinha-Bacote, J. (1998, 2002 rev.). The Process of Cultural Competence in the Delivery of Healthcare Services: A Culturally Competent Model of Care. Cincinnati, OH: Transcultural C.A.R.E. Associates.
- Fields, S.D. (2005). “Adaptation of an Existing HIV-Knowledge Questionnaire for Use with Young Men of Color Who Have Sex with Men.” Journal of Multicultural Nursing & Health, Vol. 11, No. 1, pp. 47-55. Adapts Carey, M.P., Morrison-Beedy, D., and Johnson, B.T. (1997). “The HIV Knowledge Questionnaire: Development and Evaluation of a Reliable, Valid, and Practical Self-Administered Questionnaire.” AIDS and Behavior, Vol. 1, No. 1, pp. 61-74.
- Schinke, S.P., Gordon, A.N. and Weston, R.E. (1990). “Self-Instruction to Prevent HIV Infection among African American and Hispanic Adolescents.” Journal of Consulting and Clinical Psychology, Vol. 58, No.