Think Global

Think Global

Women and HW/AI.DS: Act LocaVThink Global Deborah Boehm, BSN, MPH = The numbers of those affected by the HIV virus worldwide are staggering. Emergin...

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Women and HW/AI.DS: Act LocaVThink Global Deborah Boehm, BSN, MPH

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The numbers of those affected by the HIV virus worldwide are staggering. Emerging research demonstrates a number of lower cost medical approaches that would significantly reduce the rates of transmission of the virus. Nursing plays a critical role in quality-of-life issues at time of diagnosis. Supportive caregiving by compassionate use of vocabulary and knowledgeable resourcing for patients is part of nursing practice in HIV/AIDS care.

JOGNN, 30,342-350; 2001. Keywords: Adolescents and HIV/AIDS-CUIture and HIV/AIDS-Low-income women and HIV/AIDS-Nursing and HIV/AIDS-Older women and HIV/AIDS-Women of color and HIV/AIDS Accepted: December 2000

Deciding Who Lives and Who Dies: The Worldwide Epidemic It is a difficult time to be dead in Harare, Zimbabwe. There’s no room in the morgues; gravediggers can barely keep up with demand, and the city’s most desirable cemetery is full. It’s so bad that city officials are trying to persuade people to cremate bodies, not a popular notion in Zimbabwe, but perhaps the only solution for a society saturated with AIDS. (Susman, 2000) An AIDS epidemic is overwhelming South Africa so badly that some hospitals are turning people away, limiting treatment and forcing doctors to make hard decisions about who to treat. At Dora Nginza Hospital in Port Elizabeth, Human Immunodeficiency Virus (H1V)positive babies will be admitted for treatment only once, then are restricted to outpatient care. 342 JOG”

“We have a limited budget,” says the head of pediatrics. “When a baby gets bad, like with pneumonia, we won’t admit it for the second time but will tell the mother to take it home and let it die.” (Associated Press, 2000) Despite staggering worldwide statistics, basic nursing care can impact individuals’ and communities’ responses to HIV/AIDS prevention and treatment. Various factors make the prospect of containing the epidemic particularly challenging: high rates of sexually transmitted diseases that increase the likelihood of HIV transmission, cultural and social resistance to the use of condoms, the low social status of women, and a reluctance to openly discuss sexual or drug habits, particularly with youth. Although changing behavior continues to be the primary health care means of reducing HIV, it is not sufficient in terms of a public and nursing response to the disease. Nursing’s challenge also is to find specific ways to care for the infected through support and education. The global epidemiology of pediatric HIV infection reflects the epidemiology of HIV in women. In 1999,570,000 new pediatric HIV infections occurred (10% of total new infections), almost all from mother-to-child transmission. The joint United Nations Program on HIV/AIDS (UNAIDS, 1999) estimated that by the end of 1999 about 33.6 million people were living with HIV worldwide, 14.8 million were women, and 1.2 million were children younger than 15, including 22.5 million (67%)in sub-Saharan Africa. More than 80% of the 13.8 million women living with HIV/AIDS by the end of 1999 were African. Daily, there are 6,500 new cases of HIV infection among women (see Table 1). In Africa and Asia, where heterosexual transmission of HIV is the predominant mode of spread, nearly 2 million children of HIV-infected Volume 30, Number 3

TABLE 1

Regional HN/AIDS Statistics and Features, December 1999 Adults& Ada&& Adult Petzenta~eof Main Mode(s) of Transtnissiod Childm Preualcncc HN-POStive Chikiren Livin With Newly lnfected Rate. Adults Who for Adults Livin (in percmt) Are Women With W/m! Region Epidemic Started HlVkDS Wzth H N 3.8 million 8.0 55 Hetero Africa Sub-Saharan Late 70s to early 80s 23.3 million North Africa & Middle East South & South-East Asia East Asia & Pacific Latin America Caribbean Eastern Europe & Central Asia Western Europe North America Australia & New Zealand Total

Late 80s

220,000

19,000

0.13

20

IDU, Hetero

Late 80s Late 80s Late 70s to early 80s Late 70s to early 80s

6 million 530,000 1.3 million 360,000

1.3 million 120,000 150,000 57,000

0.69 0.068 0.57 1.96

30 15 20 35

Hetero IDU, Hetero, MSM MSM, IDU, Hetero Hetero, MSM

Early 90s 360,000 Late 70s to early 80s 520,000 Late 70s to early 80s 920,O00

95,000 30,000 44,000

0.14 0.25 0.56

20 20 20

IDU, MSM MSM, IDU MSM, IDU, Hetero

Late 70s to early 80s 12,000 33.6 million

500 5.6 million

0.1 1.1

10 46

MSM, IDU

Source. UNAIDS (December 1999). 'The proportion of adults (15 to 4 9 years of age) living with HIV/AIDS in 1999, using 1998 population numbers. bMSM (sexual transmission among men who have sex with men), IDU (transmission through injecting drug use), Hetero (heterosexual transmission).

parents are orphaned annually. Households headed by grandparents and children are the new reality in areas of high HIV prevalence. The physical welfare and social welfare of AIDS orphans in developing countries are major and neglected problems. If research findings could be translated into practice, short-course antiretroviral regimens could significantly reduce perinatal HIV transmission worldwide (De Cock et al., 2000). The use of breast milk substitutes has been found to prevent 44% of infant infections of HIV (Nduati et al., 2000). However, getting the drugs and the formula to the right people at the right time has not happened because of infrastructure politics and financial and education challenges. As of June 30, 1999, United States and territorial health departments had reported some 711,344 cases of HIV infection to the Centers for Disease Control and Prevention (CDC)-393,045 were reported to be living. Most of those with the disease (83%) were adult and adolescent men. Adult and adolescent women accounted for 16% of the total HIV population (1% higher than in 1997). Children comprise the remaining 1%, of which more than 91% had become infected prenatally (CDC, 1999). The true prevalence of HIV infection in the United States is unknown. AIDS is a reportable disease in all 50

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states, but only 26 carry out HIV case surveil.lance;3 additional states require reporting of infected children. The combined estimate from these 29 states of 47,083 people newly reported with HIV infection in 1998-1999 does not include people tested anonymously or those who have been tested in a manner that would never be counted, such as using home testing methods. Recent data suggest that the number of newly diagnosed HIV infections fluctuates little from year to year (CDC, 1999). Since 1996, American patients with HIV infection are progressing to AIDS more slowly than in the past, causing the overall incidence of AIDS to start declining. Opportunistic infections are less prevalent, and AIDS-related mortality has begun to come down. The death rate, for example, was roughly 20% lower in 1998 than it had been in 1997 (CDC, 1999). We can attribute improved outcomes to the use of potent combinations of antiretroviral drugs, earlier recognition of infection, effective diagnosis, prophylaxis, and the adoption of safer sexual practices. Outpatient care is now more accessible, thanks to United States government distribution of federal Ryan White funds, which fund primary care, prescription drug benefits, case management, and translation services for basic HIV-related care in most communities. In many African cultures, discussions of a sexual nature are taboo and talk of death is avoided. In some

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countries, the words that make up the acronym “AIDS” have yet to be translated into the local language. Approximately 90% of those who are HIV positive do not even know they are infected (Duggan, 1999). Those who are aware of their status experience shame and humiliation, telling no one and not seeking treatment for fear of alienation and discrimination. Uganda has been fighting the discrimination and stigmatization of HIV and AIDS with aggressive education campaigns geared toward the country’s young people. The program focuses on values, not sex education or safe sex, and has delayed the average sexual experience by at least 2 years. The country has seen a notable drop in the proportion of infections since its campaign began (Duggan, 1999). The status of women in many sub-Saharan countries in Africa also is a factor in the spread of HIV. Even when women remain faithful and careful, they are not in positions to demand fidelity. Men often carry the disease from one partner to the next. HIV-positive mothers give birth to HIV-positive children, and the cycle continues. In Africa, there are six HIV-positive women for every five infected men (Los Angeles Times, 1999). International public health officials state that although Africa is especially at risk, the disease will not limit itself to African borders. Failure to address the crisis now will mean bigger, more dangerous and expensive global problems later. But solutions do not solely rest with a Western response. One of the greatest obstacles is African leaders who refuse to address the virus at all and others who discourage condom use as “improper” (Mathabare, 2000). Lower cost options are available for reducing the worldwide spread of HIV, such as aggressive treatment of genital tract infections, early treatment of systemic infections such as tuberculosis, and male circumcision (Quinn et al., 2000).

Conditions Associated With HIV/AIDS Nursing practice can affect prevalence rates and encourage behavior changes. It is essential for nurses to have a high degree of suspicion about HIV in all health care settings. Early diagnosis and appropriate therapy improve the course of HIV-related illness or health. Some patients know that they are infected, others are unaware, and some may be unwilling to divulge this information. However, the HIV diagnosis can only be made if it is considered in the differential diagnosis. An ob/gyn practice is a common place for women to expect questions around sexual activity and substance use. The patient’s occupation (such as health care worker, sex worker, or mortician) or her exposure to blood or tissue products (transfusion risk between 1978 and 1985) must be considered. Questions around sexual exposure and substance use can be asked carefully (see Table 2). Current guidelines to reduce the vertical transmis-

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TABLE 2

Symptoms That Raise Suspicion for H N

Constitutional

Acute Primay H N Infection

Opportunistic

Infection

Rash; probably fungal Pharyngitis Thrush Generalized Oral hairy lymphadenopathy leukoplakia Arthralgia Thrombocytopenia Myalgia Molluscum contagiosum Lethargy Multidermal herpes zoster Malaise Fever

Tuberculosis Syphilis Human papillomavirus Toxoplasmosis Histoplasmosis Cytomegalovirus Recurrent pneumonia

Anorexia Weight loss I

sion of HIV have changed from treatment with the sole use of zidovudine to recommendations that suggest treating pregnant women as any other HIV-positive patient (K. Schwebke, personal communication, Section Infectious Diseases, Hennepin County Medical Center, Minneapolis, MN, May 2000). In 1995, the U.S. Public Health Service issued guidelines that HIV counseling and voluntary testing be a part of routine prenatal care for all pregnant women. Although there are possible risks that zidovudine causes cancer in infants, the known benefit of preventing HIV transmission from mothers to infants outweighs the risk. The most recent recommendation by the Institute of Medicine is for universal routine HIV testing of pregnant women with right of refusal. Original testing standards included informed consent and some pretest and posttest counseling. The transition to universal screening at pregnancy is concerning because an opportunity may be lost to counsel women regarding risk reduction. For more information on these issues, contact the Coalition for Women’s Choice in HIV Testing and Care, c/o the HIV Law Project, 841 Broadway Ste. 608, New York, NY 10003; (212) 674-7590. A Minnesota Department of Health pilot project reveals that in actual obstetric practice, testing for the HIV antibody is accepted or declined according to how the request is made by the health care provider. When the question is posed in a routine manner as part of the prenatal package and when expressed as a concern for transmission to the newborn, there is much greater agreement to be tested. When the request for testing comes after a set of questions aimed at risk factor assessment, women get scared and decline testing. In general, women are not aware of their risks. Women who Volume 30, Number 3

decline testing do so for personal or relationship issues and not due to fear of breach of confidentiality (M. C. Rubin, personal communication, HIV Testing Coordinator, Minnesota Department of Health, February 2000). Multiple questions remain about the best testing strategies. One approach is t o focus on testing high-risk groups. Public health departments have pilot projects that go t o the high-risk population, such as gay outreach in bars. New testing products are available for home use, though difficult t o obtain because of limited consumer demand for the product. Home HIV tests use methods identical (ELISA and a confirmatory Western Blot) to standard office testing. Results are obtained anonymously over the phone. Limited research is available regarding strategies of birth control counseling in HIV-positive women. Duggan et al. (1999) reported on 69 seropositive women of childbearing age. Most of these women felt they had adequate access to safer sex protection of their choice, but their physicians were more likely to discuss safer sex issues than contraception. This disparity suggests that physicians treat birth control as part of safe sex discussion when, in fact, these are two different concerns. Papanicolaou (Pap) smears are effective screening tests, particularly for HIV-positive females. One in five HIV-infected women with no evidence of cervical disease develops biopsy-confirmed squamous intraepithelial lesions within 3 years of screening, highlighting the importance of cervical cancer screening programs in this population (Ellerbrock, Chiasson, & Bush, 2000). It is prudent to consider HIV in every woman who develops changes in her Pap smear. Once diagnosed with the HIV virus, therapy is best left to providers who treat a large n u m b e r of HIVinfected patients or who have access t o consultation with AIDS specialists. Given the rapid advances in the field of AIDS management, the right choice of therapies is crucial. Nursing care in the general OB/GYN practice can help the specialist by making sure that patients are up to date on immunizations, providing general health maintenance, ensuring the continuation of frequent Pap smears, making referrals for health care financing, and delivering supportive, caring, and therapeutic psychosocia1 interventions.

Changing Behavior Although safe sex is the mainstay of many HIV/AIDS service organizations’ prevention efforts, the control and denial of sexuality based on fear are the not-so-subtle messages touted by society. Fear has changed many people’s behavior over the short term. However, consistent messages of doom do not achieve successful HIV prevention over the long term. The proof of this can be seen in the increase in high-risk sexual behaviors that

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have been reported in recent years. There is growing evidence that individuals, especially young men and young women, reject or ignore safe sex messages and routinely engage in high-risk sexual behaviors (Heitz, 1997;

Testing for the HIV antibody is accepted or declined according to how the request

is made by the health care provider.

Kirby, 1999; Sowell, Lindsey, & Spicer, 1998). The human need for intimacy and sexual expression is a basic drive that does not disappear when persons become HIV infected. Rather than marginalizing individuals who participate in risky sexual activities, health care providers must strive to understand the motivations driving these behaviors and recognize that fear of HIV will not serve as a long-term deterrent to sexual intimacy. Knowledge of HIV/AIDS-related issues alone does not necessarily reduce risk-taking behaviors. KoniakGriffin and Brecht (1995) reported that stated adoption of safer sex behavior by women is not equivalent to the change in risk behavior. They revealed condom-use rates as low as 4% in high-risk women despite sexually transmitted disease-prevention counseling. Van der Straten, Gomez, Saul, Quan,’ and Padian (2000) found that more than two thirds of HIV-serodiscordant heterosexual couples (one partner HIV positive and one HIV negative) surveyed in California reported engaging in unprotected intercourse. Regardless of serostatus, most respondents said, “viral load testing and awareness of post exposure prevention had no effect on their condom use” (Van der Straten et al., 2000, p. 50). According to the study authors, up to 33% of the seropositive and 40% of seronegative respondents acknowledged decreased transmission concerns in light of new HIV treatments. Moreover, the researchers found that seronegative participants reported more risk-taking and less concern about HIV transmission than seropositive participants. Participants receiving protease inhibitor therapy were 2.4 times less likely to have unprotected sex than those not receiving the therapy. These researchers urged doctors to discuss the risks of HIV transmission with their patients and their patients’ seronegative partners. Could it be that the fear of AIDS is gone and that a good dose of reality about the disastrous consequences of high-risk sexual behaviors needs to be reintroduced? Prevention messages may need to balance an understanding of human sexuality and the need for intimacy with realistic information concerning the devastating

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consequences of HIV infection. Understanding that making risky sexual choices can have deadly consequences is essential.

Nursing and HIV/AIDS Suppovt Groups Support groups have been proposed as a key intervention for people living with HIV/AIDS. A 1’iterature review (Spring, 1998) evaluated support groups’ effectiveness as an intervention, concluding that persons with HIV/ AIDS come from diverse populations with specific needs. Interventions should be specifically designed to meet these unique needs. Most intervention groups have been designed for gay men. Foster, Stevens, and Hall (1994) studied a group of 31 lesbians ages 22 to 38 living with HIV, 77% of whom were European-American, and found effectiveness of an ongoing open membership group versus a time-limited closed membership group leads to greater disclosing of fears, mental health status, relationships, and sexual concerns. Self-confidence and support from family and friends help HIV patients keep up with their complicated drug regimens. Researchers from the Medical College of Wisconsin interviewed 72 men and women taking highly active antiretroviral therapy and found that those who lacked social support or weren’t confident that they could manage their drug regimen were less likely to comply with their treatment (Catz, Kelly, Bogart, Benotsch, & McAuliffe, 2000). These results suggest that patients taking HIV medications should be regularly monitored to identify any barriers to taking their drugs on schedule. Creative nursing practice might include group communication, support, and education. The leadership position a nurse takes in such a group would reward both the patient and nurse.

Caregivers of Children With HN/MDS Caregiving within the context of HIV/AIDS is complicated by the complexity of the disease. Biologic parents and other caregivers of children with HIV/AIDS are particularly affected. AIDS is a disease that has a wide range of stages, from asymptomatic periods to times requiring frequent, intense health interventions. Many emotional challenges face caregivers of children with HIV disease. In the majority of cases, a child with HIV/AIDS will have an infected mother. Children with HIV/AIDS often live with their biologic mothers who are single women and heads of households in lower socioeconomic strata (Rose & Clark-Alexander, 1998). Mothers not only assume the normal nurturing needs of their children but also the additional care necessitated by their children’s illness. Mothers also may have the 346 JOGNN

additional emotional challenge of dealing with their own HIV/AIDS signs and symptoms, stigma issues, rejection by family and friends, fear of being sick, possible frequent hospitalizations, and concerns over their children’s long-term guardianship. Contingent on the psychologic and physical health of HIV-infected mothers and children, informal alternative caregivers such as relatives, friends, or social agencies may need to assume partial or complete care of children with HIV/AIDS. Assessment of coping skills and teaching positive coping methods will facilitate effective patient care. Confrontive coping focuses on constructively handling the stressful situation and directly confronting the problem, an effective tool for caregivers of HIV/AIDS-affected children (Rose & Clark-Alexander, 1998). Family counseling can provide tools to deal with everyday stresses. Emotional support through the use of good listening skills and counseling techniques and appropriate referrals to community services is essential.

Adolescents Studies show that HIV prevention interventions need to include information about specific risk behaviors, such as using condoms for oral sex and cleaning drug paraphernalia. Community-based and church programs, visible HIV prevention messages that are specific, and the development of condom-use skills were identified by adolescents and adolescent peer educators as relevant approaches to reduce HIV infection among this population (Villarruel,Jemmolt, Howard, Taylor, & Bush,’1998). The Montefiore Hospital AIDS program (Hoffman, Futterman, & Myerson, 1999) identified four key stages for HIV-positive youth: receiving an HIV diagnosis; disclosing HIV status to parents, partners, and others; coping with the illness; and preparing for death. Adolescent women with HIV are at risk for major clinical depression because their developmental tasks are painfully incomplete. They are striving to be independent while having an illness that creates dependence. Psychologic development during puberty, physical developmental changes, and the management of HIV in adolescents are complex for the patient, family, and the health care team.

Older Women and H N Women account for 23% of those diagnosed with HIV over the age of 50 (CDC, 1999). This is a 7 % increase over the reported 1997 statistic (CDC, 19971, in which compared proportionality cases of AIDS are greater among persons over 50 than among persons ages 13 to 49 years (Mortality and Morbidity Report, 1998). Among women age 50 or older, cases attributed to heterosexual and intravenous drug use account for the largest reported source of the infection. These statistics suggest that persons over age 50 may not be

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promptly tested for HIV infection. The diagnosis often comes later during the course of HIV infection than for younger persons. Nurses may be less likely to consider HIV infection among this group, resulting in missed opportunities for timely use of prophylaxis or antiretroviral therapies to prevent progression of disease. For example, AIDS-related opportunistic infections that occur commonly among persons over 50 may mimic other diseases associated with aging, such as Alzheimer’s, depression, and malignancies. A 1996 study (Skiest & Keiser, 1997) shows that primary-care physicians are less likely to discuss with older patients symptoms suggestive of HIV infection or to counsel older patients for HIV testing than they are to discuss with and counsel their younger patients about these issues.

Women of Colov Paralleling the trends in the developing world, women of color bear a disproportionate burden of HIV/ AIDS in the United States. Although women of color make up close to a quarter of the female population in the United States, they accounted for 79% of the cumulative AIDS cases reported among women through June 1999 (CDC, 1999). African American and Hispanidlatina women who make up 2 1 % of the U.S. female population are most severely affected. In contrast to the developing world, where over three quarters of the HIV infections among women are the result of unprotected heterosexual contact, in the United States injection drug use plays a significant role in HIV infections among women, though heterosexual contact continues to be the greatest risk (CDC, 1999). There is nothing intrinsic about skin color and health or illness. What is true is that poverty increases risk for ill health. Decades of segregation and institutionalized racism result in people of color having less access and fewer economic resources. Women in public health clinics and women of color are offered HIV testing more frequently than other women (Cotton, Kass, & Minkiff, 1999). Unfortunately, this aggressive approach to testing does not apply when it comes to treatment. HIV cost and service use has shown that racial and ethnic differences in receiving care can be largely attributable to differences in insurance (Shapiro et al., 1999). Compared with patients who had private insurance, patients with Medicaid experienced deficiencies in treatment similar to those affecting the uninsured. Immigrant women often work two jobs with no insurance to send money to relatives in their homelands. Those who are not properly documented cannot get insurance and are paid illegal earnings. Although no one is turned away from many public institutions, the costs of providing highquality care for people with HIV are substantial. Supplemental services agencies, such as home care, or durable medical equipment have few or no resources for pro-

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2002

viding “free” care. Housing, food, and transportation to health care visits also are significant issues. Specific AIDS service organizations, if one is available in the area, may support only certain populations with HIV/AIDS. A more subtle issue involves the history of discrimination and race relations in the United States. How often do women of color with HIV see themselves reflected in the faces of their health care providers? Increasingly, health care providers are compelled to become sensitive to values and priorities of non-European American patients. Being known and appreciated by your health care providers in a culturally competent manner is critical to effecting change or ensuring adherence to treatment. Trust of white health care providers, pharmaceutical companies, and government programs is a large concern. The Tuskeegee “experiments” in which black men were not treated for syphilis to observe the long-term sequela of untreated syphilis is a current memory. A modern-day example (Quinn et al., 2000) shows that viral load is the chief predictor of the risk of heterosexual transmission of HIV. Transmission is rare among persons with low levels. In this study, several hundred people in Rakai, Uganda, with HIV infection were observed but not treated for up to 30 months. It was left up to the seropositive partner in the couple to decide whether the seronegative partner would be informed, even though the investigators regularly saw both. Such a study could not have been performed in the United States. In addition, most states would have expected that caregivers would see that seronegative partners were informed of their special risk. Whether research conducted in developing countries should be held to different ethical standards from that of developed countries is a subject of intense debate (Angel], 2000). In contrast, women refugees from countries with few medical resources tend to view American health care as an opportunity. In fact, specific humanitarian AIDS immigration is now being allowed into the United States. Refugees with HIV infection can enter the United States if the danger to the public health and the spread of the disease created by the refugees’ admission would be minimal. The refugee must be counseled in HIV transmission and precautions that must be taken to prevent HIV spread (Perez, 1999). For questions regarding HIV/AIDS refugee waivers, contact the CDC at 001404-639-8109 or fax 001-404-639-2599. Women immigrants may combine allopathic medicine with one or more native traditional therapies, such as botanicals and spiritualism. Literature describing herbal medicines for HIV is scarce, and their interactions with standard pharmaceuticals have not been studied.

Low-Income Women A study of 1 2 low-income white women infected with HIV stated that the time of diagnosis with HIV in-

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fection is a key point in the trajectory of the disease process for low-income women (Leenerts, 1998). Half of the women in the study described being alienated from the health care system at the time of diagnosis, and these women did not seek follow-up health care for approximately 18 to 24 months. Disconnection became a defining force in women’s subsequent interactions and interpretations around living with HIV infection. Leenerts reported that barriers to self-care for HIV-infected women are health providers’ failure to mobilize resources, health providers’ devaluing of women, social devaluing, economic problems, and legal problems.

HIV/AIDS care does not address a single disease process but rather includes efforts to combat drug use, violence, poverty, sexism, homophobia, and barriers to health services.

Issues regarding appropriate referrals, HIV-related stigma, and financial worries are ever present. A patient feels frustrated when offered resources she cannot afford, such as a referral to a treatment program or a psychiatrist. The health care provider may make assumptions about the source of infection, such as IV drug use. Patients state that people just are not open to talk about HIV/AIDS; a large struggle with HIV has been the socalled image of the disease. It is seemingly comfortable for the public in general to say that people did something in their lives to deserve it and, therefore, are not deserving of concerned attentions. Questions regarding who will pay for medications are ever present, and whether new treatments are available to low-income or the marginally insured. The time of diagnosis emerges as a critical time for helping women mobilize the resources they need and for helping them begin to repair the damaged sense of self. At diagnosis, women need health care providers who are willing to advocate for them and help them overcome social stigma. They need support for beginning reparative measures toward physical and emotional healing. Health care providers hold the knowledge and power to offer (or withhold) caring and compassion that encourage women in self-care.

Cultural Messages Holistic HIV prevention programs must consider that human behavior changes within the context of clients’ lives. Nursing’s definition of family must be cul-

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turally appropriate. Providing culturally appropriate care may require that nurses search their hearts, identify personal prejudices, develop new insights, and address the issues and concerns of the communities with which they may be uncomfortable or unfamiliar. In that search is found the hope and humanity that so characterizes nursing’s role in the world. There is an unquestionable need to recognize the diversity of those affected by HIV/AIDS. The challenge lies in balancing the needs of, and advocacy for, various individuals and groups with maintaining an overall comprehensive approach to care and prevention. The need for diverse and community-focused programs must be addressed without fragmenting into competing factions. Cooperation and coordination between various groups involved in HIV/AIDS care and prevention has not always been exemplary, and conflict between these groups only serves the interest of those opposed to AIDSspecific funding and services. Finding the method to effect change within the context of a patient’s life is complex. It involves the right mix of timing, content, and commitment. It can be as simple as encouraging clients to reconnect with their spiritual lives. The main gathering place for black people today is still the church. That’s where we’re gonna educate our people. It’s a good place to teach changes in behavior. (“Black Churches,” 2000) Stigma related to HIV/AIDS in cultural groups such as black congregations is related to specific behaviors that are viewed as lifestyle choices connected to sin and immorality, such as promiscuity, homosexuality, or drug use. Individuals and families coping with HIV/AIDS further isolate themselves from family, social, and religious support systems because of stigmatization and fear. Churches have historically provided a broad array of support mechanisms for parishioners and the community at large, such as assistance with basic needs, health education, or disease prevention. The stigma of HIVlAIDS complicates churches’ roles in providing advocacy and support for those coping with this particular health challenge (Baker, 1999). AIDS care does not address a single disease process but rather includes efforts to combat drug use, violence, poverty, sexism, homophobia, and barriers to health services. Everline, a 47-year-old patient of mine who has carried the HIV diagnosis for 7 years, gave birth to five children by the age of 21 and is now raising two grandchildren. At the time of her diagnosis, she felt numb and scared. What helped was to pray and talk with her oldest daughter. I asked her what she would tell other women about living with HIV. “It’s not the end of the world. You know it’s like any other disease, you can’t give up taking care of yourself. Find your spirit, believe in Jesus” (Everline, personal communication, April 2000).

Volume 30, Number 3

Achieving Quality of Life McLeod (1999) wrote eloquently about meaning found by those who are the caregivers for persons with end-stage disease. She talks about caretakers who quietly sacrifice personal agendas to look after those in need, often sandwiched between child care and jobs and usually without advanced planning. The caretakers seem to live in a world apart from everyday reality and wonder if they will ever be normal again. After the author’s caregiving days were over, when her colleagues began to experience their own caregiving, they asked her how she survived. The answer, she writes, is in looking at caregiving as a spiritual practice. McLeod found meaning in suffering, for the burden was great, the information insufficient, and the doubt overpowering, but she found that if she closed her heart to suffering, she could not open her heart to love. A number of studies have looked at the process of achieving balance in life, though most HIVIAIDS information on this topic is focused on populations of men (Murdaugh, 1998). The process involves balancing the requirements of living with the disease as it progresses with preserving control over life to the extent possible to maintain life quality. Tom Hanks’s portrayal of Andrew Beckett in the movie Philadelphia showed the character’s high function and achievement in the legal world being maintained through the process of physical decline. A good quality of life exists when dreams, ambitions, and hopes are matched and fulfilled within the current lifestyle and experiences. Shortly after the diagnosis of HIV disease, a large gap exists between hopes, aspirations, and disintegration. Putting life back together involves reintegration. Life is out of balance and, for many, results in the perception of no control over one’s life. As one receives the support from loved ones, others with HIV disease, healing health care providers, and medications, dreams and ambitions become adjusted to living with HIV disease and quality of life improves. This process repeats itself over and over during the course of the disease. Creating meaning through acceptance and understanding is thought to create positive life changes. Coming to terms, the adaptive process, represents the individual’s ability to overcome despair and to make wise decisions about treatment while accepting that the outcome may be beyond one’s control. Denial is a powerful phenomenon in the HIVIAIDS epidemic, limiting the ability to bring this illness from hiding into view. We face widening infection rates, hundreds of thousands of deaths throughout the world, and no cure on the horizon. Taken as an opportunity, nursing can confront professional and personal reluctance to engage in dialogue with patients, colleagues, and social communities. Prevention efforts, such as speaking about safer sex, voluntary HIV testing, improving ac-

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cess to treatment, and support services for people with HIVIAIDS, are within the scope of humanitarian nursing practice, and each nurse plays a part in this global affair.

Informational Web Sites Epidemiology (Statistics United States) www.cdc.gov/nchstp/ hiv-aids/sta ts (Statistics Africa) http://ziggy.sanbi/ac.za/hivafrica (Statistics United States and World) http://hivinsite. ucsf.edu/stats (Statistics Global) http://www.unaids.org National Database (Maintained by CDC) http://www.cdcnpin.org (Maintained by Medscape) http://hiv.medscape.com/ home/topics/aids Social Security Disability www.ssa.gov/pu bs Working While Disabled. How W e Can Help, Publication No: 05-10020 A guide to Social Security and SSI Disability Benefits for People with HIV infection. Publication No: 05-10095 English-Spanish Glossary of Social Security Administrative Terminology www.ssa.govlespano1 General www.aidsinfonet.org http://hivinsite.ucsf.edu www.amfar.org www.pedhivaids.org http://www. kff.org A Guide to HIV/AIDS Education in Religious Settings, from the New York Department of Health Distrbution Center, 11 4th Ave., Rensselaer, NY, 121442415; or request by fax: (518) 465-0432. HHP://www.vaxgen.com (vaccine) www.avac.org (vaccine)

REFERENCES Angell, M. (2000).Investigators’ responsibilities for human subjects in developing countries. New England journal of Medicine, 342(13), 967-968. Associated Press. (2000, January 9). Deciding who lives, dies in South Africa’s AIDS epidemic. Minneapolis Star Tribune, Section A. Baker, S. (1999). HIV/AIDS, nurses, and the black church: A case study. journal of the Association of Nurses in AIDS Care, 2 0 ( 5 ) , 71-79. Black Churches Tackle AIDS. (2000, March 4). Minneapolis Star and Tribune, p. B7. Catz, S., Kelly, J., Bogart, L., Benotsch, E., & McAuliffe, T. (2000).Patterns, correlates, and barriers to medication adherence among persons prescribed new treatments

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Deborah Boehm is a nurse practitioner at the Medicine Clinic, Hennepin County Medical Centeu, Minneapolis, MN. Address for correspondence: Deborah Boehm, BSN, MPH, Medicine Clinic, Hennepin County Medical Centeu, 701 Park A m . So., Minneapolis, M N 55419. E-mail: boehm003@ tc.umn.edu.

Volume 30, Number 3