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A Cultural Approach to Conducting HIV/AIDS and Hepatitis C Virus Education Among Native American AdolescentsJohn Lowe, RN, PhD, FAAN, is a Cherokee tribal member and an associate professor at Christine E. Lynn College of Nursing, Florida Atlantic University, Davie, FL
This pilot study tests the feasibility of using a Talking Circle approach and measures cultural values and beliefs within a HIV/AIDS and hepatitis C virus (HCV) prevention program conducted among a Native American (Cherokee) youth population. A descriptive correlation design was used to examine the relationship between Cherokee self-reliance and HIV/AIDS and HCV knowledge, attitudes, and behaviors. The study used three questionnaires that were administered before and after the prevention program to collect data from a convenience sample of 41 students at a public high school within the boundaries of the Cherokee Nation in Oklahoma. Statistical analysis revealed immediate differences between pretests and posttests related to knowledge, attitudes, and behavioral intentions concerning HIV/AIDS and HCV and the cultural dynamic of Cherokee self-reliance.
Key Words: Native American • historical trauma • Cherokee self-reliance • HIV/AIDS • hepatitis C virus • cultural dynamic Native Americans have a long history of diseases, introduced by Europeans, as evidenced by a drastic decline in their population after the arrival of Columbus in 1492 (Halverson, 2007; Thornton, 1987). When compared to the total U.S. population, the incidence and prevalence of morbidity and mortality related to common diseases are much higher among Native Americans. For example, Native Americans are 770% more likely to die from alcoholism, 650% more likely to die from tuberculosis, 420% more likely to die from diabetes, 280% more likely to die from accidents, and 52% more likely to die from pneumonia or influenza than the U.S. general population (U.S. Commission on Civil Rights, 2004). The life span of Native Americans is approximately 10 years lower than that of the U.S. general population (Indian Health Service, 2000). Native Americans living in the United States today continue to have significant health problems, including high rates of infant mortality, diabetes, alcoholism/drug abuse, and HIV/AIDS and hepatitis C virus (HCV) infection (Srinivasan, 2001). Surveillance data from the Centers for Disease Control and Prevention (CDC; 2003) reported a total of 2,875 cumulative AIDS cases among Native Americans through December 2002. The number of Native American cases appear relatively insignificant compared to all others when data are presented by race/ethnicity because they comprise only a little more than 1% of the overall U.S. population (Bertolli et al., 2004). However, the impact of HIV/AIDS and HCV on Native Americans is much more evident when data are presented as rates for each population, such as HIV/AIDS and HCV cases per 100,000 Native Americans. Furthermore, the rate of AIDS among Native Americans (11.2/100,000) is higher than that for White dominant culture (7.0/100,000; CDC, 2003). Although the actual numbers of HIV/AIDS and HCV infection among Native Americans are relatively low, in a small population they are alarming. Additionally, these numbers are conservative and may not reflect the true burden of the epidemic on the Native American community (Bird, 2003). A lack of HIV/AIDS and HCV surveillance in some states with large Native American populations result in underreporting and racial misclassification that underestimate HIV/AIDS and HCV rates among Native Americans (Bertolli et al., 2004). After generations of discrimination and acculturation, many Native Americans either self-identify as White or Hispanic or are misclassified as such by service providers. In addition, aggregating Native Americans into an "Other" category with other racial/ethnic minorities or in some cases into one overall Native category can create problems in identifying communities most at risk for HIV/AIDS and HCV.
Economic, Social, and Health Conditions The loss of culture, termed "dispossession," has been noted to be a primary cause of many existing social and health problems for Native Americans. Disparity and dispossession have been viewed by Native American leaders to go hand in hand (Bird, 2003). The massive dispossession that occurred when Native Americans were removed from their ancestral lands and the genocide and cultural eradication that followed has made an enormous impact on the well-being of Native Americans. Disparities in health status and socioeconomic levels among Native Americans arise from the disparities in wealth and power that resulted from being disposed of land and culture. The limited resources that Native Americans were left with and current poor access to health care have resulted in continued health disparities among Native Americans. Therefore, dispossession is often considered to be the root of health disparities that have persisted for the past 500 years (Jones, 2006). Among the Native American population, disease has functioned both as a significant historical variable and as an occasion for unethical medical treatment policies supported by the federal government (Halverson, 2007; Henderson et al., 1999; Malouf & Findlay, 1986). Contact of Western/European settlers with indigenous populations greatly affected the well-being of indigenous communities. The colonization of America was the "most striking example of the influence of disease upon history" (Thornton, 1987, p. 47). Disease and epidemics, such as smallpox, bubonic plague, whooping cough, venereal diseases, mumps, and pneumonia, introduced by Europeans were the main cause of the genocidal decline of indigenous people and the major force for colonial expansion (Duffy, 1997; Jones, 2004). With no previous exposure to these diseases, Native Americans exhibited little immunity. In the 16th and 17th centuries, smallpox brought massive destruction, killing whole tribes (Duffy, 1997; Jones, 2004; Thornton, 1987). Among the consequences of the many deaths caused by smallpox was the loss of leaders, knowledge, and an old, traditional way of life. Because of similar destruction to lives and societies, many people today refer to HIV/AIDS as the "new smallpox" (Mitchell & Kaufman, 2002; Weaver & Yellow Horse Brave Heart, 1999). Native Americans are disproportionately affected by many social and behavioral factors associated with increased risk for HIV infection. Faced with a myriad of socioeconomic issues and health-related concerns, such as diabetes and alcoholism, poverty and unemployment are often more pressing and visible, rendering HIV/AIDS less important. In addition, many Native American groups show a higher incidence of hepatitis C, especially those located in areas where alcohol and methamphetamine use is high among Native Americans (Neumeister et al., 2007). Because "meth" is easily and cheaply produced, it has become widely accessible. The relative inexpensiveness of methamphetamine and its rapid aphrodisiac affect is the key to its high use by youth. These factors put Native American youth at a high risk for HCV infection (Aguilera, 2005; Potthoff et al., 1998). Oklahoma went from 10 seizures in 1994 to more than 100 in 2000, and the majority of these were in the counties with high Native American populations within the boundaries of the Cherokee Nation. Recently, because of laws restricting the sale of ingredients such as pseudoephedrine, Oklahoma reported a dramatic reduction in meth lab seizures (Kurt, 2005). However, other reports reveal a continued influx of methamphetamine into rural Native American communities. A decline in local production has stimulated an increase of methamphetamine from Mexican, resulting in continued use of methamphetamine in rural Native American communities (Balko, 2005; Evans, 2006). Native Americans are disadvantaged socioeconomically, with 31.6% living below poverty level, compared with 13.1% for all races in the United States. Unemployment for Native American men is 16.2% and 13.4% for Native American women, compared to 6.4% for men and 6.2% for women in the total U.S. population. This percentage is higher than any other racial group and has been even higher in the past (U.S. Commission on Civil Rights, 2004). In addition, poverty is associated with poor access to primary and preventive health care and services. Sexually transmitted diseases (STDs) also have a significant effect on Native Americans, who have the second highest rates of reported gonorrhea, chlamydia, and primary and secondary syphilis of any racial/ethnic group (CDC, 2003). The high incidence of STDs suggests that sexual behaviors that spread HIV/AIDS and HCV are relatively common among Native Americans (Bertolli et al., 2004). Alcohol and substance use is also a major factor contributing to the risk for HIV/AIDS and HCV among Native Americans. Links between alcohol/ substance use and sexual behaviors that increase the risk of HIV/AIDS and HCV in Native American populations is becoming more evident (Walters, Simmoni, & Evans, 2002). There are complex historical events and cultural issues that have contributed to alcohol- and substance use–related problems among Native Americans (Frank, Moore, & Ames, 2000). Historical events with lasting repercussions mean there are complex issues that must be considered when planning and conducting HIV/AIDS and HCV research with Native Americans. Historically, there was a social structure and systems of traditional medicine, and access to plants and animals for healing and the maintenance of adequate diets. Although a strong part of Native American cultures still exist, these systems and structures have been systematically attacked and disrupted during the past several hundred years. There is an overgeneralization that Native Americans are accepting of homosexuality or gay and alternate gender roles. Although some Native Americans may know of alternative gender roles and sexualities within their tribes, they may not embrace these as acceptable. Many Native American individuals and communities may exhibit the same type of homophobia seen in mainstream society because of Westernization of tribes (Oropeza, 2002). An environment where HIV/AIDS and HCV can spread unimpeded can be created as a result of a lack of understanding of homosexuality and discriminatory treatment of gay Native Americans. This discrimination discourages the seeking of medical services, especially where there are concerns about personal treatment and confidentiality.
Historical Trauma
Cherokee Self-Reliance The goal of self-reliance is included in the mission statement of the 1976 Constitution of the Cherokee Nation of Oklahoma, Resolution No. 28–85, which states, "The mission of the government of the Cherokee Nation is to promote and sustain self-reliance of its members" (Cherokee Nation, 1976). Self-reliance is defined as a composite of three qualities: (1) being responsible, (2) being disciplined, and (3) being confident. Being responsible refers to being responsible to care for oneself and to care for others by getting assistance, respecting self, respecting others, and respecting the Creator. Respecting others occurs by being dependable and being accountable. Honoring Cherokee traditions, values, and language is a way to respect the Creator. Being disciplined refers to setting goals and pursuing goals by taking the initiative to make decisions and taking risks. After decisions are made and goals are set, the pursuit of goals occurs by creating a plan, getting assistance, and redirecting one’s effort. Being confident refers to having a sense of identity and having a sense of self-worth. Having a sense of knowing who one is as a Cherokee relates to being proud of one’s heritage with strong values and beliefs, while acknowledging and accepting Cherokee values and beliefs. The cultural themes of "being true to oneself" and "being connected" cut across all three qualities of Cherokee self-reliance. The first cultural theme of "being true to oneself" refers to acknowledging one’s Cherokee heritage and living by the Cherokee worldview. The worldview of the Cherokee is considered to be circular and holistic, where all things are believed to come together to form a whole (Mankiller, 1991). The second cultural theme of "being connected" refers to identifying and using the resources within the creation. According to the Cherokee worldview, each person is a resource within the creation. The gifts and talents of each person will not only benefit that person but also the person’s family, community, and tribe as a whole. One identifies and uses these gifts and talents and those of others. The historical trauma of the Cherokee has continued to affect the physical, emotional, psychosocial, economic, and spiritual well-being of the people. Many Cherokee elders and tribal leaders report that the interdependence (Cherokee self-reliance) of the family, clan, and the tribe of earlier years has eroded (Lowe, 2002). Formal and informal leaders and tribal members of the Cherokee Nation have expressed concern about the lack of self-reliance among their members. Historical events are viewed as undermining self-reliance, which in turn decreases the health and well-being of the Cherokee. "The historical trauma of the Cherokee has continued to affect the physical, emotional, psychosocial, economic, and spiritual well-being of the people." Programs designed to improve the health of Cherokees must integrate and respect the beliefs and traditions of the Cherokee. The health of Cherokees and the development of programs to improve health, such as HIV/AIDS and HCV prevention, can only be understood and implemented within the context of their unique history and culture. Evaluating the effectiveness of culturally appropriate prevention programs is necessary to advance knowledge for practice relating to HIV/AIDS and HCV prevention among Cherokee adolescents.
The Talking Circle Cherokees consider the whole greater than the sum of its parts. They have always believed that healing and transformation should take place in the presence of the group because they are all related to one another in very basic ways (Mankiller, 1991; Ywahoo, 1987). Through the use of the Talking Circle, Cherokees can use the support and insight of their brothers and sisters to move away from something, such as substance abuse or risky behaviors for HIV/AIDS and HCV, and toward something else. In this way, the Talking Circle has served a very sacred function of healing or cleansing, while also serving as a way of bringing people together. The traditional sense of belonging and comfort provides healing for all, and the Circle reminds the Cherokee of life and their place in it (Ywahoo, 1987). Each person comes to the Circle as a human being with his or her own concerns. Together participants seek harmony and balance by sharing stories, praying, singing, talking, and sometimes even just sitting together in silence. A Talking Circle was used as the method of delivery for the HIV/AIDS and HCV prevention program in this study. "Through the use of the Talking Circle, Cherokees can use the support and insight of their brothers and sisters to move away from something, such as substance abuse or risky behaviors for HIV/AIDS and HCV, and toward something else."
A descriptive correlation design was utilized to examine the relationship between Cherokee self-reliance and HIV/AIDS and HCV knowledge, attitudes, and behavior. The overall specific aim of this pilot study was to test the feasibility of utilizing a Talking Circle to provide the HIV/AIDS and HCV prevention program. The research questions were (1) To what extent is Cherokee self-reliance related to knowledge, attitude, and behaviors about HIV/AIDS and HCV? and (2) What relationships exist among demographic variables and the variables of Cherokee self-reliance, HIV/AIDS and HCV knowledge, and health protective attitudes/behavioral intentions related to HIV/AIDS and HCV? Cherokee self-reliance, HIV/AIDS and HCV knowledge, attitudes, and behavioral intentions were measured before and after the prevention program.
Sample
Instrumentation
Procedure Two consultants were part of the Talking Circle. The first consultant was a health educator from the Cherokee Nation with certification to teach HIV/AIDS-related content. The second was a traditional Cherokee Elder who was a spiritual leader and began the Talking Circle by giving an overview of Cherokee history and culture, with Cherokee self-reliance as the organizing framework from which the cultural values and beliefs were presented. The instruments described previously were administered immediately before and immediately after the Talking Circle session.
The Statistical Package for Social Sciences (SPSS, version 10) was used to analyze the data. Descriptive statistics captured the characteristics of the participants, and correlation analysis examined the relationships. With regard to the first research question concerning the extent that Cherokee self-reliance relates to knowledge, attitude, and behavioral intentions about HIV/AIDS and HCV, there was a difference between pre-and postprogram scores relating to Cherokee self-reliance (Table 1). The second research question examined the relationship between demographic variables and the variables of Cherokee self-reliance, HIV/AIDS and HCV knowledge, and health protective attitudes/behavioral intentions related to HIV/AIDS and HCV. Female participants in the study showed a greater increase in knowledge and attitudes related to HIV/AIDS and HCV and indicated a willingness to change behavior following the prevention program. Age and grade level did not have an effect on the relationship among the variables.
Demographics of the Sample There were 23 (56.1%) male and 18 (43.9%) female participants in the study. Of the 41 respondents, 29 (70.7%) had both a mother and father, and 32 (78%) had siblings as well. Adolescents 16 years old represented 29.3% of the sample. Other family member data were not listed but should be noted. For example, the majority did not have a grandfather, aunt, or uncle. Of the total group, four had a stepfather; only one respondent had foster parents. From these data, a profile of the average study respondent emerged. The average participant was a Native American student, male, 16 years of age, had both a mother and father but no grandfather, was either in the 9th or 11th grade, lived with two other family members, had one brother, and had no sisters.
Cherokee Self-Reliance Frequency Analysis: Pretest and Posttest Differences were found when pretest data were compared to posttest data gathered immediately after the 2-hr HIV/AIDS and HCV program. Four items differed, especially when the ratings of agree and strongly agree were combined and were rated more positive after the program (Table 1).
Correlation Analyses Cherokee self-reliance was correlated with knowledge and attitude on both the pretest and posttest but not with behavioral intentions (Table 2). Significant correlations were found for Cherokee self-reliance, knowledge, and attitude at the .01 level of probability. Cherokee self-reliance was negatively correlated with knowledge (–.499) and attitude (–.421), but not with behavioral intentions (–.254). Knowledge and attitude, on the other hand, were positively correlated. Age and grade were not correlated with Cherokee self-reliance or with any of the HIV/AIDS and HCV subscales.
Means and standard deviations were also computed for females and males. The mean attitude score for females was 10.72 (SD = 1.36), and the mean score for males was 9.22 (SD = 2.26). The pretest mean score was 4.83 (SD = .38), and the posttest mean was 4.44 (SD = .92). There was also a difference between pre- and postprogram scores on the attitude items, with a pretest mean of 9.88 (SD = .38), as compared to a posttest mean of 10.68 (SD = 1.31). No significant difference was found between average preprogram and postprogram behavioral intention scores. Significant response differences were found in several of the questions when prescores and postscores were compared. Fifteen of the total 21 questions (71.4%) showed differences that indicated a change in knowledge and attitudes. Four statements were reversed in meaning to reflect an inverted question. This allowed for the inclusion of "yes" responses to be included in the analysis (Table 3).
All participants gave responses that indicated the presence of Cherokee cultural values, beliefs, and practices by the Cherokee students both before and after the prevention program. The variable of Cherokee self-reliance was negatively correlated with the variables of knowledge and attitude toward HIV/AIDS and HCV. This finding at first consideration may appear to indicate that the greater the knowledge and awareness about HIV/AIDS and HCV, the less the student identified with the cultural dynamics of Cherokee self-reliance. Other studies suggest that the more a Native American identifies with her or his culture, the more there is a tendency for negative attitudes toward issues such as HIV/AIDS and HCV (Bertolli et al., 2004). In other words, the disease does not "fit" or "belong" within the culture of Native Americans. Previous studies have concluded that there continues to be a denial that HIV/AIDS and HCV is a problem in Native American communities (Vernon, 2001). Many still believe it is a "White man’s" disease. As holistic thinkers, Native Americans often process new information in a circular manner as compared to majority culture that relies on linear thinking. Life is perceived and experienced as a circular process. All of life’s experiences are perceived as a whole without being broken into parts. There is a continual process of giving and taking. All of life’s experiences must be considered for the integration of new information (Mankiller, 1991). This is especially true concerning information about diseases such as HIV/AIDS and HCV because of the profound impact of these diseases on Native Americans (Crow, 1993; Lowe, 2007). As a result, changes in thinking or perceptions may not occur immediately and may not be measurable until some time has elapsed since first receiving new information. Minimal relationship between Cherokee self-reliance and behavioral intentions was evident. Knowledge and attitude, on the other hand, were positively correlated with behavioral intentions. This could be explained by insufficient opportunities to exhibit or measure any actual behavior change between the pre- and postprevention program measures, as the instruments were administered immediately prior to and immediately after the 2-hr program.
Many nurses and other health care providers interface with Cherokees and other Native Americans on a regular basis. The information gained from this study could encourage health care professionals to consider using a culturally specific Native American approach, such as the Talking Circle, when planning and implementing prevention programs for Native American youth. Schools are an ideal setting where Native American students can be provided with culturally appropriate health education and disease prevention programs. School nurses can integrate culturally specific models, such as Cherokee self-reliance, in planning and implementing programs to Native American youth. These models provide a mechanism and context for cultural values, beliefs, and practices to be shared and imparted (Garwick, Rhodes, Peterson-Hickey, & Hellerstedt, 2008; Hodge et al., 1999). "The information gained from this study could encourage health care professionals to consider using a culturally specific Native American approach, such as the Talking Circle, when planning and implementing prevention programs for Native American youth. Schools are an ideal setting where Native American students can be provided with culturally appropriate health education and disease prevention programs." Native Americans should be encouraged to enter health care professions, particularly nursing. Native American nurses can provide the cultural brokering that is necessary when cultural values, beliefs, and ways of thinking and learning need to be explained and understood so that culturally competent education and health care is assured (Cutilli, 2006). More studies need to be conducted that explore the use of culturally specific models and approaches when implementing health education programs. To examine the long-term impact on knowledge, attitudes, and actual behaviors related to HIV/AIDS and HCV, this culturally specific intervention approach should be tested during a longer period of time with larger sample sizes and comparison groups. Additionally, more instruments need to be developed that measure Native American values, beliefs, and practices. These could be used to study the relationship of Native American cultural dynamics to the knowledge, attitudes, and behavior related to a number of diseases that affect a disproportionate number of Native Americans. Researchers who are Native American are severely under represented among health scientists. Historically, most of the research conducted with Native American populations was done by non–Native American scientists who did not understand the cultural dynamics of the particular Native American population being studied. Native American researchers can use their cultural knowledge of particular Native American populations to design and implement culturally appropriate studies. In addition, the Native American researcher can provide a long-term commitment to the community. Finally, the researcher who is Native American can facilitate the brokering and bridging of research institutions with the Native American community and contribute to the body of research needed to build a knowledge base related to culturally appropriate health care for Native Americans.
Native American adolescents are at high risk for HIV/AIDS and HCV for a variety of reasons discussed in this article. Consequently, they need information about how to reduce those risks. This feasibility study used the culturally specific Native American approach of the Talking Circle to present a HIV/AIDS and HCV prevention program. The program showed a significant increase in knowledge and attitudes about HIV/AIDS and HCV. This may be explained, in part, because this approach provided an environment that was natural and familiar for the Cherokee adolescent participants. Further research needs to be conducted to compare this culturally specific prevention program with the usual standard education approach provided in schools with Cherokee adolescents.
Author’s Note: This study was funded by a grant from the Association of Nurses in AIDS Care, cosponsored by Ortho Biotech.
The Journal of School Nursing, Vol. 24, No. 4,
229-238 (2008)
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Abstract
CULTURAL DYNAMICS