VIII. Psychosocial and Cultural Considerations

VIII: PSYCHOSOCIAL AND CULTURAL CONSIDERATIONS
Barbara Aranda-Naranjo, PhD, RN, and Rachel Davis, RN

Minority women are disproportionately affected by the HIV/AIDS epidemic. The incidence of HIV is 19 times higher for African American women and seven times higher for Latina/Hispanic women, as compared with the incidence in Caucasian women. Among women of color age 25 and older, 73% of those with AIDS and 90% of those with HIV infection are African Amer-ican (CDC, 1998). Furthermore, most of the women diagnosed with HIV infection are women of childbearing age between the ages of 16 and 44 yr. These women must make a series of complex decisions concerning contraception, pregnancy, and abortion. Although little is known about how women living with HIV/AIDS make such decisions, the decision to have a baby is likely influenced by the interrelationship of intrapersonal factors, family influences and social pressures (Moneyham, 1998; Sowell, 1999).

Growing rates of HIV infection among minority women have created a burden on often already impoverished families. Numerous psychosocial and economic obstacles may prevent these women from seeking health care (Met-calfe, 1998). When women in HIV clinics in a mid-south city were given an opportunity to identify their concerns they listed 349 needs: 32% psychosocial, 14% physical, 13% service and maintenance, and 11% financial and legal (Bunting, 1999).

This chapter will identify the psychosocial issues for women living with HIV infection: economic concerns, human relationship issues, psychological issues, and cultural considerations. Interventions will be introduced to address the challenges of working with women and their families and to maintain cultural sensitivity. These interventions will facilitate the treatment and care of Latina/Hispanic and African American women living with HIV. Providers may find it helpful to establish a broad sociocultural program that can assess and address the women’s lifestyle issues. The inclusion of the sociocultural aspects of a woman’s life will allow a program to be more holistic in the provision of care for the woman and her family.

Most women living with HIV infection live in poverty and struggle with complex economic issues as a result of homelessness, substance abuse, immigration status, mental health disorders, and violent relationships. They often lack health insurance. Those women who do have health insurance usually obtain it during their pregnancy and lose it after the baby is born. Most of their energy is spent meeting basic needs such as food, housing, and employment for themselves and their families, which take priority over any health problems, including HIV infection. Furthermore, because of past experiences, many minority women tend not to trust the medical system or 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.

Strategies that utilize a linkage approach within the community have been effective in addressing basic economic needs (Anderson, 1999). A number of resources are funded specifically for HIV-infected individuals and there are community-based organizations that provide assistance with food, housing, and other basic needs. An important aspect of linkage development is to assign a case coordinator or case manager for the woman and her family. This individual can facilitate the development of a care plan and advocate for the family. Because the woman is usually the primary caregiver in the family, she will often be overwhelmed, especially in the first few months after learning of her diagnosis, with all the medical and social service appointments she will be asked to keep. The case coordinator or case manager can decrease anxiety for the woman by facilitating the appointments and serving as the broker in linking her to needed services.

Women with HIV have many significant relationships—with their family, particularly their children, their partner/significant other, friends, members of the health care team, and with themselves. Each of these relationships may affect the others and each can have a profound impact on how the woman deals with her HIV infection and other comorbidities.

HIV infection in women is clearly a family issue, imposing social, psychological, and economic burdens on women who care for family members while they are ill. Many women see themselves as they relate to their children and significant others and to the roles they take in their family structure.

When multiple family members are also infected with HIV, a systems approach, which looks at the whole to understand the parts, is needed to help the woman manage her own care and that of her entire family. 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. Women often defer their needs to those of their children and significant others. In a recent study of inner-city HIV-positive women and their infants, the large majority of women studied were likely to secure medical care for their infants, but only 46% reported ever seeking HIV-related health care for themselves (Butz, 1993).

Many women have low self-esteem and have trouble negotiating safe sexual practices with their partners. The implementation of an empowerment program for Latina immigrant women demonstrated that targeting broader socio-cultural 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 (n=74).

Because many women with HIV live with other conditions, such as substance abuse and/or mental illness, in addition to poverty and domestic violence as a part of their lives, they have had to rely on the government public health and social service system for help and health care. Many have experienced difficult moments in asking for help and have suffered humiliation on behalf of their families in trying to get what they need. Because of stigma and poverty, women are vulnerable to a decreased ability to meet their needs such as housing, food, and work as well as decreased access to health care services and/or delayed health-care seeking for themselves (Amaro, 1990; 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. Issues of substance abuse or prostitution may make the decision to seek health care more complex (Pivnicka, 1991).

A case manager or coordinator can help establish trust by participating in the initial overall assessment (if possible, in the home), giving straightforward explanations, and having a working knowledge of the structure and roles the woman plays within her defined family. Medical providers should also make extra time for the initial visit to begin the process of developing trust with the patient.

Within the African American population, one can find various arrangements that constitute a family. Some women may have “play sisters” or “play moms” who are not biological family members but who provide great support for the 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. Understanding the family dynamics is important for providers to facilitate trust and understanding. 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.

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 being the primary care provider for the family. Most HIV/AIDS-infected minority women are stigmatized even before HIV, infected by drug use, race, and poverty (Wofsy, 1987). Most 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 to respond to varied manifestations of HIV disease. Limited financial and 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.

Many women experience a variety of emotions related to infecting their child and/or the mode of transmission for themselves. They may feel anger at a partner who infected them sexually or guilt with a partner to whom they have been unable to disclose. Some of the emotional issues can be categorized by the time of the encounter with the woman. At the initial visit with the medical provider the women is most vulnerable to a number of emotions such as shock, disbelief, guilt, anger, sadness, and even suicidal ideation. At intermediate visits, which may be with various members of the multidisciplinary team (social worker, nurse, psychologist, counselor, nurse practitioner, or physician), many of the same emotions are still present, although some may be more attenuated while others may have greater prominence. The importance of intermediate visits is to continue emotional assessments to provide effective interventions and help establish trust. Regular visits are those visits established for routine follow-up and for optimal health maintenance. Typically, women maintain the regular visit schedule for all members of the family. Therefore, it is important to take time to address the emotional needs of the women at these regular visits. The most difficult visits are those occurring for crisis reasons. Crisis visits often occur frequently until the woman and her family stabilize their lives and the medical conditions of all family members. Reasons for crisis range from HIV issues to domestic violence to medical deterioration of one or more family members. It is not unusual for a women to be hospitalized at the same time as her child. These scenarios call for all team members to work together and provide anticipatory guidance – that is, devise a plan or procedure that will address the issues and problems that may 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 attempts to use active coping strategies as physical symptoms increase may be effective in promoting positive adaptation to HIV disease (Moneyham, 1998).

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 the cultural beliefs of these two groups. Culture functions as a guiding framework in which individuals, families, and communities interpret and respond to internal and external stimuli. “Culture describes learned behavior affected by home, religion, ethnic group, language, neighborhood, school and age-group.” (Cruickshank, 1989)

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, 62%; Puerto Rican, 13%; Cuban, 5%; Central and South American, 12%; other Hispanic (Spanish/Mexican/Native American population in the Southwest), 8%. (U.S. Bureau of Census, 1990). 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 are shared by most Hispanics regardless of country of origin. The identified core values are (Marin, 1989):

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 culture and her adherence to strict cultural beliefs.

CASE STUDY: HISPANIC

NAME: DE
AGE: 35 YEARS
ETHNICITY: MEXICAN AMERICAN

DE came into our program on 11/4/93 – her first visit with the physician was the day she learned of her HIV status. She was 27 weeks pregnant with her second child. She had a 14-month-old daughter who was followed by a specialist because of urological problems. Her risk factors included two heterosexual partners and history of a blood transfusion after her first pregnancy in 1992 secondary to hemorrhage. She stated she was tested because of the blood transfusion.

     We performed HIV testing on her daughter, and explained the risk to her unborn child because of her HIV status; the plan of care for the child after birth was reviewed.

     At the time of diagnosis DE received a classification of AIDS due to a CD4 count of 178. Despite these obstacles, she maintained her health during her pregnancy, continued to care for her daughter, and began getting care for her own HIV disease. DE tested in the lower ranges for verbal intelligence and conceptual processing with psychological evaluation.

     DE’s support system included her mother (who initially did not know DE’s status), and her common-law husband, who was not the father of her oldest child, but was the father of the child she was carrying. The HIV test results for her daughter and husband were negative. DE experienced a variety of emotions, including fear, anxiety, and depression, and needed much support from the entire staff to assist her not only in understanding more fully what HIV was or how it affected her and her family, but also in obtaining financial support.

     As with most new clients, DE was distrustful of staff initially, but with care, concern, and perseverance, our entire team (physicians, nurses, social workers, psychologist, foster granny volunteers, etc.) developed a trusting relationship with her. DE was empowered to take control of her own life and that of her children. Her second child was a boy, and within1–2 months of life it was obvious he was infected and he had a very low CD4 count. She never missed a clinical appointment for him and, in fact, was always there even before clinic began. DE provided excellent care to her son, learned to give him his medications, and had good relationships with the medical staff, so that she would call with any problems he was having.

     By 1996 her own health had deteriorated significantly and her care was transferred to another physician, but she continued to bring her son to our program for care. She was linked with hospice services and almost died several times, but each time improved to the point where she was ultimately taken off the hospice list. Her determination to personally care for her son was a strong motivating factor in her ability not only to stay alive, but to actually improve her health status.

     DE was able to make the choice as to how and where her son would spend his last days, and was at his bedside when his short life ended. She let balloons loose into the sky at his burial to signify that her son had gone to heaven.

     DE continues to live, and both she and her husband have dropped in to the clinic occasionally to visit and to show us photos of the family trip to Disneyworld, pictures of her son in his last hours, etc. DE has also become involved with the Pediatric AIDS quilt project, started by one of our program nurses.

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 sociodemographic characteristics. According to Gibbs, even though family conflict is reported in all races and socioeconomic groups, minorities have a higher rate because they are more vulnerable to detection and 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. 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 (Sudarkasa, 1996). They are the seven “Rs”: respect, responsibility, reciprocity, restraint, reverence, reason, and reconciliation. The core values defined are

Two of these values, respect and responsibility, were major guiding principles for behaviors within families from 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 to provide for their children, who in turn repay the “sacrifice” by putting their parent’s needs before their own in many instances (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 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). To provide comprehensive health care to these populations, programs should include the spiritual dimension and beliefs 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).

CASE STUDY: AFRICAN AMERICAN

NAME: BA
AGE: 43 YEARS
ETHNICITY: AFRICAN AMERICAN

BA was referred to the program after delivering a baby boy 7½ weeks prematurely; he was born withdrawing from drugs and was found to be HIV infected. After the referral was made at 5 p.m. on a Friday, two nurse-case managers went to the hospital to meet with BA and to initiate the process of caring for her child. While there, local law enforcement officers came into the patient’s room and informed her that they were removing her newborn son from her custody because of her drug use during pregnancy.

     BA was 43 years old and had a history of injectable drug use since the age of 15 when she ran away from home. She was homeless at the time of delivery and was attempting to reunite with her family.

     On initial assessment she was happy but nervous and apprehensive about the possibility that her child could be infected with HIV. She did not get prenatal care because doctors had told her that her uterus was so badly scarred from sexually transmitted diseases that she was unlikely to get pregnant. This pregnancy was a pleasant surprise for her and she saw this baby as a gift, a miracle from God.

     She was admitted to an outpatient drug rehabilitation program and her baby was placed in foster care. With the help of her caseworker she reunited with her mother and sisters after revealing her HIV status. She also met with her spiritual counselor on a regular basis to discuss life and death issues.

     She completed her 6-month drug rehabilitation program successfully and was able to petition the courts and get her son back. She was in the hospital when her son became very ill and was also hospitalized. She was able to talk with her pediatrician and sign advanced directives for her child. He died in his mother’s arms during their simultaneous hospitalization. When the nurses and caseworker came to be with her at the hospital she shared the following story: “I have done a lot of things wrong in my life and I didn’t think I had a chance to get in the pearly gates. But you know I have loved my son and he knew that. I tried to be the best mother I could be for the short time I had him. So when I die and I go up and see St. Peter at the pearly gates he is just going to nod his head “no.” As I am just about to leave I hear someone running and I turn around to hear a little boy screaming: “St. Peter, that’s my mom and she loved me and I love her. You have to let her in!” BA remained clean for the entire year that her infant was alive, but relapsed back into drug addiction upon his death. This was the way she had always coped before. BA was distrustful of the system (all the team members), had been estranged from her family, and had an array of health problems. Early in her assessment she said, “I have come home to die.” She did live two years, during which time she was back and forth between drug rehabilitation programs and hospitalizations for her HIV infection. A key factor in her care was the assignment of a case manager and the coordination with her drug rehabilitation team. She had constant contact with her spiritual counselor, with whom she had had a long-lasting relationship since her childhood. She was referred late in the stages of HIV infection. She was given medical information about herself and child in a straightforward manner, which she appreciated, commenting “tell it to me straight.” She had a very close relationship with her child’s pediatrician. She tended not to keep her own medical appointments and deferred most of her energy to her child’s care. BA died one month after her son’s death, surrounded by her family, the staff, and her spiritual counselor.

In addition to the major core values of a culture, other considerations are the “vital signs” of the community in which the woman lives. Community 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 practitioners should be encouraged to view the people of the community in the context of their environment. The interrelatedness of individuals to their environment leads one to view people not as solitary subjects, but as integral parts of a whole community.

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 poverty. According to Mindy Fullilove (1996), psychological well-being depends on strong, nurturing places.

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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