Women With HIV Infection: The Three Waves of Scientific Inquiry

Features JANAC Vol. 11, No. 5, September/October 2000 Bova / Women With HIV Infection

Women With HIV Infection: The Three Waves of Scientific Inquiry Carol Bova, PhD, RN, ANP Initial efforts to curtail the spread of HIV infection to women failed. Consequently, women are the fastest growing population newly infected with HIV. This article presents a historical look at the waves of scientific inquiry that directed research on HIV infection among women. The author proposes three distinct waves. Each has been shaped by movement within the scientific community away from traditional biomedical and public health approaches toward feminist strategies that embrace the social, political, and cultural forces that influence women’s health. These waves provide both valuable insights for nurses new to the field of HIV and a framework to guide future research on women with HIV infection. Key words: HIV, women, historical analysis, research

The number of women newly infected with the human immunodeficiency virus (HIV) continues to rise despite initial efforts at prevention (Centers for Disease Control and Prevention [CDC], 1998). Additionally, women who are currently infected with HIV continue to be cared for using research findings based mostly on male study participants. The failure of early scientific efforts to both curtail the spread of HIV to women and provide gender-sensitive interventions for women infected with HIV warrants investigation. This article presents a historical look at the various waves of scientific inquiry that directed research on women with HIV infection. This information will be useful to nurses caring for women with HIV infection as well as to researchers beginning their careers in the midst of this epidemic. The author proposes three distinct waves (Table 1). Each has been shaped by movement within the scientific community away from

traditional biomedical and public health approaches toward feminist strategies, which take into account the social, political, and cultural forces that influence women’s health. The major foci of the first two waves are summarized. Next, concepts being studied within the third wave are discussed. Finally, recommendations for creating movement toward a fourth wave of inquiry are explored. The three waves of inquiry provide valuable insights into the past successes and shortcomings of HIV-related, women-specific, research. Time frames are provided to orient the reader. However, these waves are bidirectional, fluid in nature, and bound by concentration of inquiry rather than exact dates in time. Finally, the waves represent both a historical reconstruction of scientific inquiry and an awareness of the political, moral, and emotional context in which science has attempted to operate. The waves hold important implications for directing future research on women with HIV infection.

The First Wave (1981-1989) The first wave began around 1981 when the first case of acquired immunodeficiency syndrome (AIDS) Carol Bova, PhD, RN, ANP, is a postdoctoral fellow at the Yale University School of Nursing, New Haven, CT. She is also an instructor/nurse practitioner at the University of Massachusetts Medical School, Worcester. The author gratefully acknowledges Anne E. Norris, PhD, RN; Sally H. Rankin, PhD, RN, FAAN; and Ann B. Williams, EdD, RN, FAAN, for their continued support and critical review of a previous draft of this article. Support provided through an NRSA predoctoral fellowship (#5 F31 NRO7084).

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 11, No. 5, September/October 2000, 19-28 Copyright © 2000 Association of Nurses in AIDS Care

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Table 1. Summary of Themes Contained in the Waves of Inquiry Wave Wave 1 `

Wave 2

Wave 3

Wave 4

Themes Women as vessels of infection Clinical trial exclusions based on reproductive potential Research on women and children focuses on perinatal transmission Prevention efforts are individualized and focus on abstinence and condom use Women-specific disease manifestations Gynecological issues Obstetrical issues AIDS case definition changed Active recruitment of women into clinical trials Women-specific longitudinal studies initiated Beginning research on women living with HIV infection Prevention efforts more contextual and community focused Social, cultural, and power inequities Gender as a central concern Caregiver responsibilities Reproductive decision making Scientific advances in medical management of HIV infection The major themes of Wave 4 have yet to be delineated. However, it is anticipated that the process of inquiry will build on the successes and failures of Waves 1 through 3, advance knowledge in the clinical management of HIV infection and possibly the development of new areas of concern surrounding comorbidities and treatment side effects, anchor nursing interventions in the social and cultural context revealed in Wave 3, and will create methodologies based on an insider’s understanding of the complex issues faced by women with HIV infection

in women was described. At the beginning of this period, women were virtually ignored. The early descriptions of AIDS in women, although rare, typically involved an association of women with sexual promiscuity, prostitution (Rose & Keystone, 1983; Smith et al., 1983), or as sources of infection for their children (Wofsy, 1987). This view is consistent with the more traditional biomedical and public health approaches, which define women by their sexual or reproductive function (Amaro, 1990). Therefore, the hallmark of this first wave was a focus on women as vessels of infection.

Two thirds of the funding allocated for studies on women and children, during the first decade of the epidemic, went to research on pediatric AIDS (Kurth, 1993). This occurred even though pediatric AIDS cases remained relatively stable (at 1% to 1.5% of the total cases of AIDS) compared with rising cases of AIDS in women (from 3.2% in 1981 to 11.1% by 1989). The first large-scale studies proposed by the National Institutes of Health (NIH) to address women’s issues were the Women’s Infant’s Transmission Study (WITS) and the AIDS Clinical Trials Group (ACTG) study, Protocol 076. The main purpose of both studies was to understand and ultimately reduce perinatally acquired HIV infection. During the first wave, it was virtually impossible to identify literature on women with HIV infection outside the context of childbearing or risks of pediatric infection. During this time, clinical trials of new therapies predominately enrolled men (Korvick, 1993). The reasons for poor enrollment of women in AIDS clinical trials in the early days included (a) identification of more HIV-infected men through screening efforts, (b) restrictions placed on women of childbearing potential from entering trials, (c) few women meeting the AIDS case surveillance definition, (d) lack of resources (e.g., transportation, child care, money) for poor, minority women to travel to large clinical trial sites for extensive research visits, and (e) distrust of the scientific/medical establishment by marginalized women. Regardless of the reasons for poor enrollment, it is troublesome that conclusions about drug safety, side effects, and effectiveness were based largely on male subjects. Few writings of this period were concerned with individuals who were currently HIV-infected. Research efforts focused on HIV prevention. Education and counseling aimed at behavioral change were espoused as the way to deal with HIV infection among both men and women (e.g., Check, 1988; Guinan & Hardy, 1987). Prevention efforts regardless of gender centered on advocating celibacy or having one lifetime sexual partner (Guinan & Hardy, 1987). If those options were not acceptable, consistently using condoms during sex was advised. Intervention efforts included condom education for commercial sex workers and injection drug–using women. Drug-using women were encouraged to enter

Bova / Women With HIV Infection

treatment programs and to avoid pregnancy. Literature and bleach kits for cleaning needles and drug use paraphernalia were distributed. Although few write about it, directive abortion and sterilization counseling was commonplace during this time (Corea, 1992). Prevention efforts were not necessarily aimed at preventing HIV infection in these particular women but at curtailing the spread of HIV to vulnerable others. In fact, the actual needs of both men and women living with HIV infection and AIDS were virtually ignored during this period. Many of the strategies proposed to reduce the spread of HIV among women were based on the abstinence and safer sex model directed at gay men. First-wave efforts failed to curtail the widespread infection of women with HIV in the United States. Educating women about their risks, advocating abstinence or condom use, and advising against pregnancy were considered viable solutions aimed at preventing HIV infection in women and their offspring. The lack of inquiry into specific biomedical and social problems faced by HIV-infected women during this first wave resulted in a significant gap in knowledge for clinicians faced with growing numbers of HIV-infected women. This gap spurred activists, clinicians, and researchers to demand increased funding for womenspecific AIDS-related research.

The Second Wave (1987-1994) The second wave began around 1987, when a letter presented by women participants to the planners of the Third International Conference on AIDS addressed the concern that women, as persons infected with HIV, had remained invisible as a focus of scientific inquiry (Thomas, 1987). From disparate avenues, AIDS activists, clinicians, and the Congressional Women’s Caucus, raised issues about (a) the lack of understanding of women’s specific manifestations of HIV infection, (b) the way women had been ignored by the scientific community in response to the epidemic, and (c) the need to focus attention and funding priorities on the unique illness processes and service needs of women living with HIV infection. As a result, a focus on women-specific disease manifestations emerged. Additionally, a major change in the AIDS case

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definition ensued, rendering it more reflective of women-specific disease entities. The hallmark of the second wave was the idea that women, by virtue of their biological differences, are distinct in how they manifest HIV-related illness. Early reports suggested that women were dying without meeting criteria for an AIDS diagnosis (Selik, Buehler, Karon, & Berkelman, 1990) and that the time from diagnosis to death was significantly shorter for women (Rothenberg et al., 1987). In addition, an increase in certain gynecological diseases (e.g., yeast vaginitis, human papilloma virus infection, pelvic inflammatory disease, and cervical dysplasia) were emerging with increasing frequency in HIV-infected women. Virtually every major article on women with HIV infection published after 1990, in some way, discussed the gynecological manifestations of HIV infection (e.g., Carpenter et al., 1991; Smeltzer & Whipple, 1991; Williams, 1992). For the first time, active recruitment of women into AIDS clinical trials was encouraged. The National Institute of Allergies and Infectious Diseases (NIAID) formed a women’s committee to address issues of recruitment and retention of HIV-infected women into clinical trials. The ability to enroll large numbers of HIV-infected women into clinical trials was now viewed as a survival skill for most AIDS research centers. Bans on childbearing potential exclusions were replaced by demands that women practice barrier contraception while participating in trials. In addition to including women in drug clinical trials, there was a call for more women-specific research. For example, in 1993, NIAID launched the Women’s Interagency HIV Study (WIHS). The CDC and NIAID cosponsored the HIV Epidemiology Research Study (HERS). Both studies were carefully designed to answer the most pressing second-wave questions concerning women with HIV infection. These questions included (a) Is the natural history of HIV illness different in women? (b) If it is different, in what ways? and (c) What are the gynecological manifestations of HIV infection? These landmark studies have begun to explicate the patterns of illness experienced by HIV-infected women. Research studies began to emerge examining the reproductive concerns (Williams, 1990), health

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concerns (Rose, 1993), and sources of stress (Semple et al., 1993) of women living with HIV infection. Issues around reproductive decision making also came to the forefront (e.g., Arras, 1990; Hutchinson & Kurth, 1991). Scientific investigations were beginning to focus on women as persons living with HIV rather than merely as vessels of transmission. Prevention efforts during the second wave focused on helping women negotiate safer sex practices and condom use with their partners. Great strides were made during this wave in understanding condom use (e.g., Mayes, Elsesser, Schaefer, Handford, & Michael-Good, 1992; Norris & Ford, 1992; Saracco et al., 1993) and the link between culture, risk reduction beliefs, and behaviors (e.g., Flaskerud & Nyamathi, 1989; Ford & Norris, 1993). There was a greater emphasis on behavioral approaches and communitybased programs rather than simply on individual education and counseling. Several researchers were beginning to question the status quo of recommending condoms and vaginal spermicides (predominately nonoxynol-9) as the mainstay of female heterosexual HIV prevention. Reports began to surface suggesting that nonoxynol-9 may enhance HIV transmission in some women by reducing normal vaginal flora, causing irritation and in extreme cases resulting in genital ulcers (Kreiss et al., 1992; Stein, 1993). In addition, Stein (1990) questioned the widespread public health approach of advocating condom use as a prevention strategy for women. She made a strong case for funding research aimed at developing a method that would place women in control (i.e., topical anti-HIV virucides). AIDS and women’s health activists were largely responsible for creating the second wave of inquiry. Research during this time took on a more feminist perspective. Researchers began questioning some earlier male-centered notions about the natural history of HIV infection, disease manifestations, prevention strategies, and clinical trials’ exclusion criteria based on reproductive potential. As a result of these changes, new clinical knowledge emerged to guide clinicians caring for HIV-infected women. In sum, the second wave was pivotal in thrusting the unique needs of HIV-infected women into the forefront of the national agenda on AIDS.

The Third Wave (1994-present) The actual beginning of the third wave is somewhat elusive. Ideas characteristic of this wave began in the late 1980s but never fully matured until the mid-1990s. Increasing numbers of HIV-infected women, major medical advances, and pressure from activist groups to address barriers to care among women of color prompted much of the third-wave inquiry. In addition, many of the second-wave questions were being answered or studied. For example, several studies indicated that after controlling for socioeconomic status (SES), risk behavior, and race/ethnicity, very few differences (except gynecological and obstetrical issues) in morbidity and mortality and disease progression existed between women and men with HIV infection (e.g., El-Sadr & Bebchuk, 1999; Keruly, Chaisson, & Moore, 1995; Levin, Chung, Milazzo, & Brundage, 1995; Melnick et al., 1994). This knowledge freed scientists to investigate other issues important to understanding the impact of HIV on the lives of women. Third-wave thinking is characterized by a focus on how HIV-infected women differ significantly from men, not just by biology or illness characteristics, but more important, by SES, culture, race, ethnicity, risk behavior for HIV, social supports, and caregiver responsibilities. The problems encountered by HIV-infected women are complex and unique. They face insurmountable stresses grounded in poverty, racial and ethnic discrimination, injection drug use, lack of support, a changing illness course, and their social role as caregivers and mothers. These multiple and complex factors influence third-wave inquiry regarding women in the HIV epidemic. Each of these factors will be discussed, and recommendations for developing areas of inquiry within the third wave are presented. Research studies have revealed that women with HIV infection differ significantly from HIV-infected men in terms of SES (e.g., Anderson, 1995; Fleishman & Fogel, 1994). HIV-infected women typically are impoverished (Hellinger, 1993; Sharts-Hopko, ReganKubinski, Lincoln, & Heverly, 1996) and depend on public assistance (Frank, Blundo, & Brabant, 1995) to survive. Unlike their male counterparts, HIV-infected women may not experience financial devastation with

Bova / Women With HIV Infection

advancing disease (Frank et al., 1995). Instead, HIV-seropositive women continue to live in the same poverty that has surrounded most of their lives. SES is an important predictor of morbidity and mortality, affecting nearly every aspect of physical and psychological health (Adler et al., 1994). Some consider poverty to be the single most powerful determinant of health (Farmer, Zierler, & Rodrigues, 1995; Mann & Tarantola, 1995). Although researchers have acknowledged the differences between HIV-infected women and men in terms of SES, they have continued to combine the research results on SES-related variables such as depression, anxiety, social support, stress, and coping (e.g., Fleishman & Fogel, 1994; Friedland, Renwick, & McColl, 1996; Perry, Fishman, Jacobsberg, & Frances, 1992). Such aggregated data provide little insight into how these variables are experienced by HIV-infected women. The challenge of the third wave, therefore, is to consider SES not as a variable to be controlled, but as a key variable to study in HIV-infected women. The majority of women with AIDS in the United States became infected with HIV either directly or indirectly from injection drug use. In comparison to injection drug–using men, there are distinct differences in the risks women assume to maintain a drug habit. Connors (1995) reports that injection drug\-using women are more likely to (a) be sexually involved with another injection drug user, (b) exchange sex for money or drugs, (c) borrow a needle to avoid arrest, and (d) lend a needle to avoid abuse, as compared to injection drug–using men. These measures used to maintain a drug habit, although attempting to reduce the risk of violence or arrest, make women more vulnerable to acquiring sexually transmitted or blood-borne infections, including HIV and hepatitis. Amaro (1995) criticized the various models used in understanding HIV risk behaviors. She suggests that most traditional models (e.g., health belief, theory of reasoned action, social learning theory), which have been used extensively during the first and second waves to examine risk behaviors, lack a conceptualization of gender as a central tenet. Therefore, third-wave inquiry must include an understanding about power inequities and the social and cultural forces that shape women’s risk behaviors. In addition, an understanding of how these risk behaviors influence adjustment to the

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chronic illness of HIV infection is key to developing gender-specific interventions for persons with HIV. In addition to being poor and connected with injection drug use, the majority of HIV-infected women also belong to racial and ethnic minority groups (Centers for Disease Control and Prevention, 1998). Understanding how race, ethnicity, and culture influence issues important to HIV-infected women is complex. First, one must disentangle the concepts of race, ethnicity, and culture to attain conceptual clarity. Often these concepts are used interchangeably. Race refers to biological or physical characteristics, such as skin color, facial features, and hair type. Zuckerman (1990) has shown that these racial classifications are arbitrary and that racial groups are more alike than they are different. Ethnicity is most often used in reference to groups that are characterized by common language, culture, or nationality (Betancourt & Lopez, 1993). In contrast to race and ethnicity, culture as defined by Rohner (1984) is a set of highly variable systems of meanings that are learned and shared by a community. These meanings represent designs and ways of life that are transmitted from one generation to another. Often, factors attributed to racial or ethnic differences more accurately represent socioeconomic or cultural variations (Betancourt & Lopez, 1993). Studies characteristic of the first and second waves frequently used race and ethnicity to describe samples and compare them to national statistics. In addition, data on African Americans and Hispanics have been combined to form a non-White or minority cohort (e.g., Frank et al., 1995; Sharts-Hopko et al., 1996). These methods have been concerned with identifying differences rather than understanding the dimensions of culture, which lie beneath racial and ethnic identification. Third-wave inquiry, in contrast, involves systematic attention to the ways in which cultural characteristics (e.g., race, ethnicity, acculturation, SES, personal meaning of illness) impact issues significant to women with HIV infection. Therefore, the importance of race, ethnicity, and culture in shaping research methodology takes center stage in studies on women with HIV infection. Social support has become a major variable to be understood during the third wave. Social support has been identified as an important factor influencing how women with HIV infection live day to day (Andrews,

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1995). Lack of adequate social support is related to more depression (O’Leary, Wadhwani, Gebelt, & Frenkel, 1995), less fighting spirit (Nannis, Semple, & Patterson, 1995), and poor adjustment to illness (Walch, Coons, & Spence, 1995) for HIV-infected women. Studies detailing the availability of such support have provided variable results. Reports have suggested that HIV-infected women lack sufficient social support resources (Pratt et al., 1995; Rose, 1993), whereas others have suggested that women may simply have different social support needs (Frank et al., 1995). Social support needs and availability may vary as a function of other third-wave foci, such as SES, risk behavior for HIV, race, ethnicity, and culture. Injection drug users tend to have smaller social support networks due to difficulty reentering family networks because of prior conflicts (Bonuck, 1993). Those with lower income levels express greater need for tangible support (Williams, 1993). Support groups are sought most often by White women (Frank et al., 1995), whereas African American women receive quality support from a small number of close family members (Williams, 1993). Little information is available on the social support needs and preferences of HIV-infected Latinas. Work done during the third wave will advance knowledge in the area of social support by further explicating the cultural dimensions of support. This in turn will be used to identify supportive interventions based on the diversity of HIV-infected women. HIV disease is distinct from other chronic illnesses because very often, caregivers are also afflicted with the same illness. This is especially true in the case of women. HIV-infected women most often assume primary responsibility for the care of children (Crystal, Dermatis, & Sambamoorthi, 1995; Mellins & Ehrhardt, 1994) and frequently care for multiple family members who are also HIV-infected (Lingle, Fiore, Gormley, & Flanigan, 1995). Women with HIV infection provide care in an environment filled with crime, fears of disclosure, and few external resources (Mellins & Ehrhardt, 1994; Rose, 1993). Andrews (1995) contends that for some HIV-seropositive women, HIV disease is a somewhat minor stressor compared to the stressors of poverty and caregiving demands.

Caring for others often poses a barrier to HIVinfected women obtaining their own needed health care services. HIV-infected women have been found to delay entry into care (Ickovics, Forsyth, Ethier, Harris, & Rodin, 1996), miss greater numbers of health care appointments (Mellins & Ehrhardt, 1994), receive fewer health care services (Hellinger, 1993), and have poorer adherence to antiretroviral therapy (Crystal, Sambamoorthi, & Merzel, 1995) as compared with men, even after controlling for insurance status. In addition, women with HIV infection are more likely to use the emergency room, require hospital admission, and use fewer outpatient services as compared with men with HIV (Mor, Fleishman, Dresser, & Piette, 1992). Many of these problems can be partially attributed to the competing demands of caring for oneself and caring for others. Lea (1994) asserts that the impact of HIV-infected women as family caregivers must be considered in research aimed at reducing the stress experienced by these women. Third-wave inquiry, therefore, includes studying the effect of HIV illness on the role of women as mothers, spouses/partners, and caregivers. For women with HIV infection, this knowledge will ultimately lead to interventions designed to enhance the joy and reduce the burden of caring for others. During the third wave, scientific advances in the medical management of HIV disease have altered how women live with HIV infection. Highly active antiretroviral therapy (HAART) has become the mainstay of medical management (U.S. Department of Health and Human Services & Henry Kaiser Family Foundation, 1999). The level of actively replicating virus in plasma (HIV-1 viral load) is viewed as the most significant marker of disease progression and treatment success. Achieving and sustaining an undetectable viral load through careful selection of the antiretroviral regimen and adherence strategies have become major foci of HIV clinical care. These thirdwave medical advances have resulted in persons with HIV living longer but at the cost of more symptomatology. Diarrhea, nausea, fatigue, peripheral neuropathy, myalgias, and weight changes have become common manifestations of both HIV infection and aggressive drug therapy.

Bova / Women With HIV Infection

Toward the Fourth Wave The successes and failures of the first three waves will ultimately guide fourth-wave inquiry. First, it is anticipated that prevention efforts will continue to move away from abstinence models toward programs that include an understanding of culture, power, human sexuality, and substance abuse behaviors. Studies on the effectiveness of postsexual exposure prophylaxis, harm reduction models, and culturally based education programs will continue to emerge. Second, the ability to evaluate gender-specific differences in illness experiences and disease manifestations is likely to proceed from the second wave of inquiry. For example, understanding the implications of proposed disparities in HIV-1 viral load measures as predictors of disease progression among men and women (Farzadegan et al., 1998) is essential to guiding clinical decisions for all persons with HIV infection. Third, new medical knowledge in HIV infection will create areas of concern around the mounting comorbidities and treatment side effects such as mental illness, Hepatitis C infection, lipodystrophy, renal disease, and pulmonary hypertension. Fourth, findings that are now emerging from the third wave will move research to a new level by examining HIV-related issues within a social, cultural, and political context. Access to health care, adherence to HAART, quality of life, aging with HIV infection, the impact of mental illness, and culturally specific intervention strategies to improve the health of women living with HIV infection are all located along the margins of third- and fourth-wave inquiry. These types of inquiry will require expanded methodologies that are capable of grounding research within the cultural milieu of the population. Finally, an essential step in creating movement toward fourth-wave inquiry is the ability to acquire an insider’s understanding of the complex issues faced by HIV-seropositive women as they negotiate their daily lives. This understanding affects every aspect of the research enterprise. Both qualitative and quantitative research strategies require this insider’s vision to guide instrument or question selection, recruitment strat- egies, sample decisions, time lines, and budget requirements.

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Considerable debate exists on whether an insider’s understanding is ever attainable by members of an outsider group (e.g., Hooks, 1990). Some argue that when scientists exhibit goodwill and are open-minded, thereby maintaining a willingness to co-construct knowledge from multiple perspectives, the possibility of developing a proxy measure of the insider’s viewpoint does exist (e.g., Bruner, 1990; Form, 1971). Additionally, Walzer (1987) contends that the ideally situated scientist should not occupy a place at the center or at the periphery but be meaningfully connected with the group under study. Fortunately, society has afforded nurses an intimate place in people’s lives and thereby the profound opportunity to be meaningfully connected with diverse human beings. Nurse researchers, therefore, are well positioned to acquire this insider’s understanding and consequently have a unique opportunity and responsibility to advance methodologies that enhance this capacity. Strategies for acquiring an insider’s view include prolonged engagement with HIV-infected women and work with key informants from the population to guide the research program. Prolonged engagement can occur as a result of clinical practice or may be the outcome of more deliberate action, for example, through participant observation, focus groups, and fieldwork methods. This engagement serves as the foundation from which all other decisions are made. This insider’s vantage point is critical to knowledge development in nursing aimed at creating interventions and achieving outcomes that are anchored in the social, cultural, and power inequities embedded in the lives of HIV-seropositive women.

Summary Recent trends indicate that women are one of the fastest growing populations newly infected with HIV; particularly low-income, minority women and those with ties to injection drug use. Analysis of the waves of scientific inquiry into the HIV epidemic reveal that research has only touched the surface of understanding how women manage day to day with the added burden of HIV-related illness. First-wave research focused on protecting innocent others. Second-wave research

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focused on women as biologically different and thus, having different illness experiences. Third-wave inquiry goes deeper to uncover the social and discriminatory dimensions of women’s experiences with HIV. Movement toward the fourth wave will require creative, insightful methodologies that embrace co-construction of knowledge from diverse perspectives. Last, in whatever way the history of the third and fourth waves is written, it is clear that studies that address the complex and unique needs of these courageous women are desperately needed.

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