Chapter VIII
Addressing Cultural Issues To Improve Quality Of Care

Barbara Aranda-Naranjo, PhD, RN, FAAN,
Magda Barini-Garcia, MD, MPH,
Moses B Pounds, PhD, and
Rachel Davis, RN, ACRN

I. Introduction  TOP

Over the past five years, medical and public health researchers and policy makers have noted the growing role of behavioral, social, and cultural matters in outcomes in health and disease. A consistent theme among the recommendations and findings in their reports is the interdependent role of cultural issues in health care and quality of care. Cultural issues in health care were identified as important in medical education (Cuff, 2004), in the health care work force (Smedley, 2004; Gebbie, 2003), in health care disparities (Smedley, 2003), and in health communications (Nielsen-Bohlman, 2004). These inquiries suggest the need for core competencies, as reflected in curricular changes as well as new directions in research and policy. Women and the cultural factors related to gender are among the issues emphasized by policy makers, researchers, and clinicians alike.

Culture is defined as learned and shared behaviors, beliefs, and values that provide meaning to an individual’s life and that serve as a lens and guiding framework through which individuals, families, and communities understand and respond to their experiences (Hahn, 1995). Culture is affected by home, religion, ethnic group, language, neighborhood, school, and age-group (Cruickshank, 1989; Helman, 2000). Culture, social and economic status, and gender roles significantly influence the decisions women make when seeking health care and can be both a positive and a negative factor in facilitating use of health services. Providers who can effectively identify and address cultural factors associated with illness and its management are in a better position to improve diagnosis, treatment strategy, and patient outcomes.

This chapter will discuss the cultural and social considerations, including gender roles, for women living with HIV infection and help identify the benefit that provider-based assessment tools can offer in improving women’s access to and utilization of HIV primary health care.

II. Economic Issues  TOP

Poverty remains a basic underlying context for most women living with HIV infection. In the US women with HIV are often poor and un- or under-insured. Their ability to improve their economic status is often impaired by lack of education or work skills and their role as mothers or caretakers for other family members, who may also have HIV infection. They may depend on the economic support (including insurance benefits) of their husband or boyfriend, making them particularly vulnerable if abandoned. Women also generally have lower-paying jobs and often earn less for comparable work than men. Ultimately food, housing, and, when substance abuse is present, the need for drugs or alcohol may take priority over health care. Lack of insurance, transportation, or flexible working hours can also affect access to appropriate care (Bunting, 1999).

The economic situation is most extreme in sub-Saharan Africa, where national economies and social institutions in the hardest-hit countries have been devastated because so many individuals in their most-productive years have become sick or have died from HIV/AIDS. Husbands, who are often the primary wage earners, may leave their wives when they learn the woman is HIV-infected. Besides caring for themselves, the women left behind become the sole supporters and care givers for their children and other family members. Lack of food, housing, and employment as well as lack of clean water, electricity, and other basic resources may be deficient or lacking and impact the health care professional’s ability to provide basic primary care in addition to antiretroviral treatment (ART).

Many women with HIV have had to rely on the government public health and social service system for help and health care and may have experienced difficult moments in asking for help or have suffered humiliation on behalf of their families in trying to get what they need (Sowell, 1999). Because of stigma and poverty, women are vulnerable to a decreased ability to meet their needs, including housing, food, and work, as well as decreased access to health care services and/or delayed health-care seeking for themselves (Amaro, 1995; Mays, 1987). Women with dependent children and those who are pregnant may be even more reluctant to seek care, partly because they fear having their children taken from them, particularly when issues of substance abuse are involved (Pivnick, 1991).

III. Gender Roles and Social Expectations  TOP

While women have central responsibilities within their families, gender roles often constrain their authority and influence their ability to make decisions about their own health and medical care. Women’s social responsibilities clearly affect their health seeking behaviors, potentially delaying their own treatment and resulting in the placement of others’ priorities above their own (Anderson, 1993). Women often defer their needs to those of their children and significant others. In a study of inner-city HIV-positive women and their infants, most women studied secured medical care for their infants, but only 46% reported ever seeking HIV-related health care for themselves (Butz, 1993). Women may experience more stigma and discrimination related to HIV than men because of its connotations with promiscuity and prostitution and sexuality in general. Because of past experiences of stigma and discrimination, many minority women tend not to trust the entire health and human service infrastructure. These factors combine to make health care less accessible and less of a priority in the lives of many HIV-infected women. Women who are at risk fear getting tested for HIV based on the stigma of testing positive (Gupta, 2002). Therefore, they may delay seeking care until they are quite ill.

Along with the stigma and discrimination of an HIV diagnosis, women living with HIV experience alterations in their personal relationships. The core of many women’s identify is mediated through their relationships to their children and significant others, and to their roles in the family structure. A diagnosis of HIV may result in abandonment or violence by partners. When multiple family members are also infected with HIV, the woman is generally the caretaker when they are ill, resulting in significant social, psychological, and economic burdens (Gupta, 2002). The well-being and the return of normalcy for a family depend on the care-seeking ability of the woman and the sensitivity of health care providers in facilitating the process of seeking care (Anderson, 1999). Each of the woman’s relationships—including her relationships with members of the health care team—may affect the others and each can have a profound impact on how the woman makes choices about her HIV infection and comorbidities.

The social position and imbalances of gender/power in many societies contribute to low self-esteem and difficulties negotiating safe sexual practices with their partners. The implementation of an empowerment program for Latina immigrant women demonstrated that targeting broader sociocultural issues may increase the skills necessary for these women to avoid transmission of HIV infection by their sexual partners (Gomez, 1999). The women in this study showed significant increases in comfort with sexual communication, were less likely to maintain traditional sexual gender norms, and reported changes in decision making power.

Providers need to understand the choices that women have made and the social support structures that best serve them, based on their roles and cultural beliefs. Significant relationships may include informal relationships and non-family members who can help the woman throughout her HIV disease course. These important non-family relationships may replace a family system that has not provided the support needed since the woman was diagnosed with HIV. Within the African American population, one can find various arrangements that constitute a family and that provide great support for women in times of crisis (Asante,1995). Many Hispanic women have madrinas (godmothers) and comadres (friends related by marriage or baptism) who are great sources of support for them during times of crisis. Providers need to understand the family dynamics in order to facilitate trust, understanding, and empowerment of these women so that they can choose the options that fit their culture and their life’s reality. Before giving the initial HIV test results and discussing disclosure issues, it is essential to have an understanding of the communication dynamics in the family, especially with the significant other of the woman.

IV. Psychological Issues  TOP

Women face an array of psychological issues, related not only to possible coexisting substance abuse, mental illness, domestic violence, and poverty, but also to the stresses of living with HIV disease and often being the primary care provider for the family. Most HIV/AIDS-infected minority women are stigmatized even before becoming HIV infected because of drug use, race, or poverty (Wofsy, 1987). Many of these women are single heads of households with young, dependent children, and, in general, lack a community of support such as that seen among gay men (Weiner, 1991). This situation affects the actual and perceived availability of supportive resources over the course of HIV disease. Limited emotional resources affect HIV-infected women’s access to both psychological and medical services. Low self-esteem is the rule rather than the exception and plays a major role in ability to access and adhere to care.

Women experience a variety of emotions related to their HIV infection. They may feel anger at a partner who infected them sexually or guilt with a partner to whom they have been unable to disclose their status or guilt if they have transmitted HIV to any of their children.

At the initial visit with the health care provider the woman may feel overwhelmed and experience shock, disbelief, guilt, anger, sadness, and even suicidal ideation. At intermediate visits, many of the same emotions are still present, although some may be more attenuated while others may have greater prominence. Emotional assessments should be continued in order to provide appropriate interventions and help establish trust. Crisis visits may occur frequently until the woman and her family stabilize their lives, as well as the medical conditions of all infected family members. Reasons for crisis may range from HIV issues to domestic violence to medical deterioration of one or more family members. These scenarios call for all team members to work together and devise a plan or procedure that will address the issues and problems that arise. A debriefing session by the care coordinator/social worker with the woman after the crisis has been resolved is important to prevent potential future crises.

Despite this complex picture and against all odds, many of these women have strong coping abilities and profound survival instincts. Some studies have suggested that interventions to support use of active coping strategies as physical symptoms increase may be effective in promoting positive adaptation to HIV disease (Moneyham, 1998).

V. Provider-Patient Communication  TOP

The recent Institute of Medicine study Unequal Treatment called particular attention to the role of culture in undermining effective communication between members of racial/ethnic minorities and their providers (Smedley, 2003). Clinical decision making (Eisenberg, 1979), patient satisfaction, adherence to treatment, and poor health outcomes are related to the communication between patients and their providers. While the IOM study focused on US racial and ethnic minorities, many of the issues are relevant internationally.

Providers working with HIV-infected women face the challenges of understanding how culture influences the access and use of health services, the place of HIV in the priorities of women’s everyday lives and the constraints of social and cultural traditions on women’s decision making around health and disease. When providers don’t understand the cultural beliefs of their patients, they increase the likelihood that these beliefs will be barriers to providing care. Providers should assess their own cultural beliefs and consider how they affect their behavior towards patients.

Most of us understand some of the basic differences in culture, such as food, dress, music and language. But it is more difficult to understand that people may view the world from different perspectives. When we are aware of differences, we may change our behavior out of respect for restrictions between males and females or customs about greetings or otherwise adjust our behavior. Even when we are not fluent in another culture’s traditions, making accommodations may be easier with people we know and with groups we frequently interact with. Cross-cultural misunderstandings and confusion are more likely to arise when both provider and patient lack experience with each other’s culture.

Because of the cultural diversity of communication styles and the potential for missed communication and misunderstanding between patients and providers, it is vital that health care professionals understand that different cultures communicate differently. Factors impacting cross-cultural communication include the meaning of specific words, the pacing of language, the volume and tone of the spoken words, and whether or not gestures are utilized as part of the communication process.

Effective communication makes use of context, as well as words, gestures, and symbols.

“Individuals from low-context cultures prefer a direct, literal style of interaction, and people are expected to say more or less exactly what they mean. Examples of low-context cultures are: United States, Canada, Europe, Israel, and Australia. Low-context cultures value self-expression skills such as clarity, fluency, and brevity. Speakers often seek to convince and persuade their listeners.”

“The Orient, the Arab world, and much of Africa are examples of high-context cultures. The preferred style of interaction is an indirect one in which meaning is carried less by the literal meaning of the words and more by contextual clues such as the place, time, and situation and the relationships between speakers. High-context cultures value harmony, subtlety, sensitivity, and tact more than clarity. Speakers often seek to connect with their listeners.” (McKay, 1995)

Understanding the differences between low-context and high-context cultures can enhance the interaction between the client and the provider. Culture is not the enemy or adversary of clinicians. Like any other information in the clinical encounter, culture is information that a provider can understand and learn to manage.

The questions in Table 8-1 can be used as a tool that providers can apply to understanding clients from a different culture. This approach creates an atmosphere in which patients can become partners in the provision of their care (Weeks, 1979).

VI. Cultural Issues  TOP

Because most women living with HIV infection in the United States come from two primary groups, African and Hispanic Americans, this section will focus on cultural beliefs associated with these two groups. A comprehensive care program that broadly addresses the sociocultural aspects of a woman’s life in a collaborative and multidisciplinary fashion will facilitate the treatment and care of women from diverse cultural backgrounds. These examples will illustrate strategies and approaches that local providers can adapt to their patients and the local circumstances in which women struggle to negotiate their care.

A. HISPANIC CULTURE

In Hispanic populations, one complex facet of cultural sensitivity and competency lies in the diversity of the subgroups that make up this population in the United States. The subgroups and their representation are: Mexican American, 58.5%; Central and South American, 10.8%; Puerto Rican, 9.6%; Cuban, 3.5%; all other Hispanic (including Spaniards), 17.8% (U.S. Census Bureau, 2001). Each of these subgroups has its distinct culture, as well as various levels of assimilation into the general population. Providers need to address these distinctions in developing intervention and prevention programs for HIV/AIDS and other health issues.

Amidst the diversity among Hispanic Americans, social scientists have identified cultural values that most Hispanics share regardless of their country of origin. The identified core values are (Marin, 1989):

• Familismo - the importance of the family to the individual
• Colectivismo - the importance of friends and extended family members, such as godmothers (madrinas) and godfathers (padrinos)
• Simpatia - the act of being polite; respectful not confrontational
• Personalismo - the preference to be with other persons of the same ethnic group
• Respeto - the act of upholding one’s own integrity without damaging another person

For Hispanics, HIV/AIDS is not an individual issue, but one that affects the family structure and the unity within the community. In many Hispanic families the husband makes the decisions for all members of the family, including his wife. The extended family in the Hispanic culture may also play a major role in making decisions. Clinicians need to assess the role of the woman within her family and her culture and her adherence to strict cultural beliefs.

B. AFRICAN AMERICAN CULTURE

As with other minorities, African Americans experience high rates of unemployment and overall poverty. Any discussion of core values must be evaluated in the context of these concerns. Even though family conflict is reported in all races and socioeconomic groups, minorities have a higher rate of conflict because they are more vulnerable to arrest by the police and referral to public agencies (Gibbs, 1990). These problems may be more appropriately viewed as community problems rather than problems of the black family (Gilbert, 2002). Amidst the complexity of life for African American individuals and their families, they are sustained by their core values, which have historical roots in Africa.

The core values that most African Americans embrace have been described by Sudarkasa (1996). The seven core values are respect, responsibility, reciprocity, restraint, reverence, reason, and reconciliation. They are defined as follows:

• Respect - the respect for others, from parents and relatives to elders or leaders in the community.
• Responsibility - being accountable for self and for those less fortunate in one’s own extended family and in one’s community.
• Reciprocity - giving back to family and community in return for what has been given (mutual assistance).
• Restraint - giving due consideration to the family or community/group when making decisions.
• Reverence - deep awe and respect towards God, towards the ancestors and towards many things in nature.
• Reason - taking a reasoned approach to settling disputes within the family or the community.
• Reconciliation - the art of settling differences; that is, putting a matter to rest between two parties.

Respect and responsibility were major guiding principles for behaviors within families in Africa that have been carried over to African American families today. Restraint is related to the notion of “sacrifice.” Parents exercise restraint over their own destinies in order to provide for their children, who in turn repay the “sacrifice” by, in many instances, putting their parent’s needs before their own (Sudarkasa, 1988).

Spirituality is a strong cultural value among both African American and Hispanic American women. Historically, the church in the African American community has been the single most important organization advocating for public policies to influence improvements in health, education, and financial quality of life (Poole, 1990). From this perspective there is a continuum between religion and one’s quality of life. As the guiding center for the extended family, reinforcing the sense of self and self-esteem within the culture, the church offers opportunities for the whole family’s development (Butler, 1992).

Churches in the African American community have created and mobilized leaders and increased hope (Neeleman, 1998; USDHHS, 1998). In order to provide comprehensive health care to African American and Hispanic women, programs should include the spiritual dimension in all aspects of care.

Many African Americans share a distrust of the health care system related to historical experiences such as the Tuskegee experiment. Airhihenbuwa (1990) suggests that African Americans operate in a society where rules and social systems appear to be adversarial. The degree to which they perceive the odds against them as manageable or overwhelming will depend to a significant degree on the transactional competency and success of their parents, the competence of the role models in their primary community, and the availability and accessibility of resources and support to help them in their coping efforts (Myers, 1983).

C. COMMUNITY

In addition to the major core values of a culture, other considerations include the “vital signs” of the community in which the woman lives. These vital signs include, but are not limited to, prevailing cultural beliefs, pressing issues for the community, employment rate, the level of poverty, the definition of health espoused by most people in the community, access to health care, characteristics of the community leaders and their followers, support structures, and the level of trust in the health care system. These factors can be described as a community’s ecological system (Meyer, 1988).

Health care providers should be encouraged to view the people of the community in the context of their social environment. The interrelatedness of individuals to their environment leads one to view people not as solitary subjects, but as integral parts of a whole. With both Hispanics and African Americans the community is vital to a good and healthy life. However, both of these populations experience a disproportionate level of displacement due to the requirements for economic survival. Health and human service providers who want to serve these populations with sensitivity and quality must understand the complexity of living with HIV disease in the midst of poverty. According to Fullilove (1996), psychological well-being depends on strong, nurturing places.

VII. Interventions  TOP

The following interventions are suggested to help health care providers give more effective and culturally-appropriate care:

• Strategies that utilize a holistic approach towards women’s care should include the social, economic, and psychological well-being of the individual.
• Assign a case manager/case coordinator to help the woman negotiate multiple parts of the health care/social services system; help decrease anxiety and establish trust; and serve as a broker and advocate for her and her family’s needs.
• Teach the woman about the structure of the health and human services system in her community.
• Establish peer interventions so that women are able to talk with other infected women about negotiating day-to-day responsibilities and dealing with stigma/discrimination issues.
• The initial visit is often filled with many different emotions and reactions. Take time to deal with these reactions, begin the process of developing trust, assess possible suicidal thoughts, and give information in small bites over several closely spaced visits.
• Give simple straightforward explanations.
• Identify the woman’s ethnic subgroup of origin, when appropriate.
• Include a bilingual provider on the health care team (do not use the children or the custodian to translate; this demonstrates a lack of respect and may result in miscommunication or misunderstanding).
• Diagram the family structure and discuss the role of each member; review the role of women within the family; family dynamics need to be understood before recommending disclosure actions.
• Develop or link with empowerment programs targeting sexual communication, negotiation, and self-esteem.
• Recognize extended family members as key supports for the patient.
• Explore the cultural values and beliefs of the woman, both at the initial assessment and over time.
• Show respect for spiritual beliefs and how they affect advance directives and other decisions women make
• Initial assessment by the case manager or peer outreach worker in the home may give additional insights into the family structure and the roles the woman fulfills within her family.
• Understand each woman’s priorities and develop strategies to meet those needs she considers most important.
• During intermediate visits, work on establishing trust between the woman and her provider/health care team. Trust is an essential continuous, dynamic process requiring open and ongoing communication between women and their health care providers/team.
• During regular visits, inquire about the health status of all members of the family, especially the children; continue to assess the emotional status of the woman.
• Identify and have a working knowledge of the core values of thecommunity you are serving.
• Develop an alliance with key community based organizations.
• Teach staff about the effect of community and culture on the woman’s decision-making and belief/value system.
• Identify women who have to leave their community for long periods of time for employment (e.g., migrant workers), and assist them in making connections for health care while away and in ensuring access to needed medications.

VIII. Summary  TOP

Women living with HIV infection are living with a multitude of medical and social problems. They live not in isolation but as integral members of their communities and primary caregivers for their families. Although HIV infection is often not their primary concern, this does not mean they do not want help. To understand and assist women living with HIV, it is important to take a systems approach, to look at the whole to understand the parts, to think in loops rather than in straight lines (O’Connor, 1997). High quality care for women living with HIV disease is best given by addressing not only her medical needs, but also her economic needs, her relationships, her emotional responses, her culture, and her community: all of the faces of a multi-faceted life.

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