Context-Based Advocacy for HIV-Positive Women Making Reproductive Decisions

ARTICLE JANAC Vol. 14, No. 1, January/February 2003 10.1177/1055329002239189 McCreary et al. / Context-Based Advocacy

Context-Based Advocacy for HIV-Positive Women Making Reproductive Decisions Linda L. McCreary, PhD, RN Lilian M. Ferrer, PhD (C), RN, CNM Perla R. Ilagan, PhD (C), RN Linda S. Ungerleider, MSN, FACCE, ACRN As the number of HIV-positive women of childbearing age continues to rise, and treatments available to manage HIV become more accessible, the issue of HIV-positive women’s reproductive decision making is gaining importance for nurses in AIDS care. Nurses and other health professionals care for these women as they decide whether to bear children. The decision whether to have children is complex and influenced by a number of individual and societal factors, creating an ethical tension between the interests of HIVpositive women and those of society. This article proposes a six-step, context-based advocacy process for nurses and other health professionals who interact with HIV-positive women of childbearing age. The advocacy process described is grounded in a review of literature on HIV/AIDS, factors influencing HIV-positive women’s reproductive choices, and nursing advocacy. The proposed advocacy process enables nurses to support women’s self-determination and decision making in a way that is informative and empowering.

and advancing to include multidrug therapy, the rate of perinatal transmission in the United States has decreased dramatically from 25% to 30% in the early 1990s to between 1% and 6% currently (Garcia, 2000). In the United States, as HIV disease has become increasingly a progressive chronic illness rather than an imminently fatal condition, the issue of HIVpositive women’s reproductive decision making has gained attention. The decision whether or not to have a child under these circumstances is difficult and complex. A number of societal and individual factors influence women’s decisions; these factors are often in conflict and create an ethical tension between the rights of women and the interests of society. This issue has generated much controversy as clinicians and ethicists have grappled with the question of how to respond to HIV-positive women and their childbearing decisions. Nurses and other health care professionals regularly involved in the care of HIV-positive women are concerned with how best to counsel these women regarding their reproductive decisions.

Key words: decision making, ethics, HIV/AIDS, patient advocacy, reproduction

HIV infection rates continue to rise among women of childbearing age in the United States. As of June 2000, 91% of women infected with HIV were between the ages of 13 and 49 years, and 41% of those women were infected through heterosexual contact; moreover, this proportion is increasing (Centers for Disease Control and Prevention [CDC], 2000). Since the advent of antiretroviral therapies, beginning with zidovudine

Linda L. McCreary, PhD, RN, is a postdoctoral research trainee at the University of Illinois at Chicago College of Nursing. Lilian M. Ferrer, PhD (C), RN, CNM, is a predoctoral research trainee at the University of Illinois at Chicago School of Public Health. Perla R. Ilagan, PhD (C), RN, is a predoctoral research trainee at the University of Illinois at Chicago College of Nursing. Linda S. Ungerleider, MSN, FACCE, ACRN, is a doctoral student at the University of Illinois at Chicago College of Nursing.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 14, No. 1, January/February 2003, 41-51 DOI: 10.1177/1055329002239189 Copyright © 2003 Association of Nurses in AIDS Care

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In the United States, reproductive decisions have traditionally been a private matter left to the prospective parents to decide on the basis of their values and priorities. This has been true even in instances in which the prospective parents are known to carry genes that result in their child being born with fatal genetic conditions (Levine & Dubler, 1990). However, in the case of HIV-positive women, many health professionals and ethicists have felt that the consequences to the affected children and to society as a whole dictate a more directive approach. These professionals have intervened with directive counseling, advising HIV-positive women to avoid or delay childbearing (Arras, 1990; Kass & Faden, 1996; Levine & Dubler, 1990). Those who advocate such directive counseling cite ethical principles such as beneficence and justice, which focus on prospective children’s well-being and on the costs to society of providing care for children infected with HIV (Locher, 1996). Other health professionals and ethicists contend that directing women to avoid or delay childbearing is an inappropriate impingement on their autonomy or right to selfdetermination (Faden et al., 1996). In the United States, in light of the reduced risk of transmission as a result of treatment with zidovudine, it is becoming increasingly difficult to justify limiting HIV-positive women’s abilities to make moral choices (Powers, 1996). Current CDC (2001) recommendations for the reproductive counseling of HIV-infected women advise health care providers to be nondirective and supportive of any decisions regarding their reproductive options. The current CDC (2001) recommendations support the view that women’s rights to autonomy in reproductive decision making exist regardless of their HIV status. However, HIV-positive women may experience reduced autonomy due to their status as patients within the health care system. They may be subjected to subtle, or even explicit, coercion and advised by their health care providers not to have children. Having the support of an advocate through the decision-making process may enhance a woman’s autonomy. Increasingly, nurses have defined advocacy as an essential part of the nursing role. Nurses can and should be prepared to advocate for the active participation of women in this decision-making process. Although the perspective presented here is that of nursing, it is important that all health care providers understand this process.

How can nurses advocate for HIV-positive women who seek assistance in making informed reproductive decisions? There is little discussion in the literature about the role of nurses as effective advocates for HIVpositive women. The purpose of this article is to propose an advocacy process for nurses who interact with HIV-positive women making reproductive decisions. This advocacy process is embedded in the context of U.S. culture and therefore promotes women’s abilities to make autonomous choices. However, this process respects women’s priorities and cultural values and seeks to support their decision making in a way that is respectful, informative, and empowering. If carried out within another cultural context, the dialogue might focus on different priorities or values, but the advocacy process itself would be much the same. To effectively advocate with women in any context, nurses must be aware of the many factors that interact to influence their reproductive decisions.

Personal Factors Influencing Woman’s Decision Making It is important that nurses understand the motivations and values that may influence HIV-positive women’s choices regarding childbearing. The decision to have a child is an important one. There are many reasons women choose to have children, ranging from personal values to relational motivations and including cultural influences. A woman may feel that motherhood is her lifelong desire. She may be responding to her male partner’s wish to have a child or to have unprotected sex. And influenced by her culture, a woman may view becoming a mother as defining and fulfilling her role as an adult woman (Locher, 1996; Sowell, Phillips, & Misener, 1999; Sunderland, 1990; Williams, Watkins, & Risby, 1996). Motivations at each level may interact to influence women in favor of childbearing. Moreover, there may be numerous competing factors that would influence against having a child. HIV-positive women are challenged to weigh the many pros and cons and make the best choices for their particular situations. Although many factors are involved in a woman’s decision, a number of studies and review articles have reported that the decision to have a child is influenced only moderately by a woman’s knowledge of her HIV-

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positive status (Sowell & Misener, 1997; Sowell et al., 1999; Sunderland, 1990; Wesley et al., 2000; Williams et al., 1996). Factors other than HIV status appear to be more influential in determining most women’s childbearing decisions. Considerations of daily survival needs, such as food and shelter, as well as needs for affiliation, such as acceptance and family relationships, often take priority over HIV-related issues (Locher, 1996). Social factors such as gender inequality may render women powerless to insist on condoms or other contraceptives and may lead to physical abuse if they act to avoid childbearing (Sunderland, 1990). Several studies have investigated HIV-positive women’s motivations to have children and found them to be multifactorial. HIV-positive women view motherhood as a source of joy, love, and a purpose for living. Having children gives women adult status and identity, motivates them to improve their health behaviors, and gives them hope for the future and legacies to leave their families at their own deaths (Sowell & Misener, 1997; Sunderland, 1990; Wesley et al., 2000; Williams et al., 1996). Some motivating factors exert an ambivalent influence, in that they might move women either to have or to avoid having children. These include the uncertainty of HIV transmission to their infants, religious beliefs, previous experiences with having children while HIV-positive, the attitudes of families or partners, and their own health status (Sowell & Misener, 1997). Sowell and colleagues (1999) found that women held conflicting attitudes toward having children. A majority of their sample reported that they did not wish to become pregnant because of their fears both that their own health would suffer and that they would leave their children alone at their subsequent deaths. At the same time, a majority of Sowell et al.’s sample also reported believing that babies would be positive additions to their lives and that their families would give their babies good homes if they died or became too ill to care for their children. A majority also believed that if they became pregnant, it was God’s will for them to have their babies, and their children would not be infected (Sowell et al., 1999). Although health care providers, partners, family members, peers, and ministers may influence reproductive decision making (Williams et al., 1996), studies conducted in the United States show that most HIVpositive women feel that the decision is ultimately

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theirs to make (Kass & Faden, 1996; Murdaugh, Russell, & Sowell, 2000; Sowell & Misener, 1997; Wesley et al., 1999). Murdaugh et al. (2000) found that most HIV-positive women in their sample preferred to consult knowledgeable health care professionals to obtain information about the risk for transmission, treatment, side effects, and other relevant issues. Many women wanted to talk about their decisions with women who had experienced pregnancies while infected with HIV. Other respondents said they would talk with their partners, other family members, or religious leaders. Women wanted health care providers to be up to date on the most recent knowledge about HIV (Murdaugh et al., 2000), to give them accurate information about both the pros and cons of childbearing, and to support them in making their own decisions (Kass & Faden, 1996; Sowell & Misener, 1997). Women’s desire for this kind of information and support is the basis for nurses’ advocacy with them. Nurses can help women not only discern those personal factors that are most influential to their decision making but also identify and consider societal factors that influence childbearing decisions.

Societal Factors Influencing Reproduction Although childbearing is a personal decision, the consequences of childbearing by HIV-positive women affect society as a whole. Thus, society has an interest in individual women’s reproductive decisions. As a member of society, a nurse is in a position to articulate the views that may be held by the larger community. These views are legitimate and should be considered by a woman as she makes her decision. Bringing society’s views into the decision-making process is an important aspect of a nurse’s advocacy role. One aspect of the societal context that affects HIVpositive women’s decision making is the ordering of values according to financial costs to society. Following utilitarian ethics, actions for which the financial costs outweigh the perceived benefits to society are not usually supported (Powers & Faden, 2000). For example, the potential costs to society of providing care for HIV-infected children, or of providing foster parenting for a woman’s healthy, orphaned child, may outweigh the potential contribution that the child might make to

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the society and may thus create an unacceptable burden to society. These concerns remain relevant even though perinatal transmission is declining with adequate treatment. In reality, many women continue to be diagnosed during pregnancy, at delivery, or not at all in the perinatal period. Thus, they and their babies are not adequately treated. Moreover, although permanency planning and “standby” guardianship laws may help ensure the ongoing care of children with incapacitated mothers, these programs are not always accessible to HIV-positive women. A woman is also a member of society and therefore shaped and affected by its values. Religious and cultural beliefs are societal values that influence a woman’s decision making. Her internalized societal values may directly conflict with other values motivating her, such as her desire to be a mother, her fears about transmitting the virus to her child, or her concern about becoming too ill to care for her child. It is a nurse’s role to help the woman discern which values of society and which values of her own take precedence as she makes her decision. The need to balance the rights of an individual with the rights of society is an ongoing tension. In the case of an HIV-positive woman, the ethical principle of beneficence requires society to protect the woman’s well-being, as well as that of her infant (Kass, 1994), two goals that may at times come into conflict (Chervenak & McCullough, 1996; Moore, 2000). The ethical principle of respect for persons requires that an individual’s autonomy not be restricted, thus promoting a woman’s right to decide what is in her best interest (Gauthier, 2000). In health care, the essence of autonomy is for a person to be free from interference and control by others in making health decisions consistent with his or her own beliefs and values (Gadow, 1980b). For an HIV-positive woman, having autonomy means that she is free to make decisions that reflect her own values (Kass, 1994). The ethical principle of justice, however, requires that actions are taken that benefit the greatest number of people and that scarce resources are equitably distributed (Brock, 2000). In the case of an HIV-positive woman, applying the principle of justice, which stresses the rights of the many, may be inconsistent with the principles of beneficence and autonomy, which stress the rights of individuals. The tension underlying these competing

ethical values illustrates a difficulty in depending fully on ethical principles for clinical decision making. Becker and Grunwald (2000) pointed out that although health professionals depend on the basic ethical principles of beneficence, autonomy, and justice, in fact, all decisions are influenced by the context of the situation. Therefore, the advocacy process discussed here is a context-based process that thoughtfully considers an individual’s values, motivations, roles, responsibilities, and social situation.

Nurses’ Advocacy Role Mallik (1997a) suggested that the patient role creates vulnerability in an individual’s expression of autonomy; this vulnerability results in the need for advocacy to ensure the patient’s self-determination in making decisions. Historically, the close, ongoing relationship between nurses and patients places nurses in an advantageous position to advocate for their patients (Gadow, 1980a). Patient advocacy as a nursing role has been discussed in the nursing literature since 1976 and has subsequently gained widespread attention, especially in the United States and the United Kingdom. Nursing educators have also integrated the advocacy role into nursing curricula. Advocacy has been conceptualized in a number of different ways. When advocacy is defined in a legal sense as acting on behalf of another, there is an inherent danger of fostering paternalism rather than autonomy. Nursing advocacy seeks to support a woman acting on her own behalf to attain her own goals; this approach to advocacy enhances autonomy. According to Gadow (1980b), freedom of self-determination is a human being’s most fundamental right and should not be impeded at any cost. In making self-determined decisions about one’s best interests, it is an individual’s values that matter, not those of a health professional (Corcoran, 1988; Gadow, 1980b). Kohnke’s (1982) definition of nursing advocacy includes two important nursing actions that assist an individual in making autonomous decisions: providing relevant information and then supporting the person’s decision once it is made. However, in Kohnke’s model of advocacy, a nurse is inactive during the actual decision-making process. Although this approach

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may enable patients to make informed decisions, it does not assist patients in the process of weighing their options and may lead to their feeling isolated as they go through the actual process of making their decisions (Mallik, 1997b). Gadow’s (1980b) approach to advocacy went beyond providing information and then supporting a person’s decision by addressing a nurse’s participation in the decision-making process itself. Gadow defined advocacy as active assistance to patients in their selfdetermination concerning health alternatives. . . . It is an effort to help patients become clear about what they want in a situation, to assist them in discerning and clarifying their values and examining available options in light of those values. (p. 46) It is this more comprehensive approach to advocacy that the authors propose nurses adopt in their work with HIV-positive women. The literature highlights the pros and cons of being a nurse advocate. Although the advocacy role is supported by the Western culture’s strong beliefs in individual rights and autonomy (Powers, 1996), in practice, advocacy involves risk taking and has the potential to create legal complications for nurses (Mallik, 1997a). Nurses may find themselves in conflict with patients’ families, other health care professionals, and their own employers when they advocate for HIV-positive women (Rushton, 1995). Not every nurse in every setting may be able to act as an advocate. However, even as advocacy in nursing has been challenged and criticized, it has become an accepted role of professional nurses (Malik & Rafferty, 2000). The authors maintain that it is an essential role of nurses who work with HIV-positive women.

An Advocacy Process as an Alternative to Directive and Nondirective Counseling The advocacy process the authors present offers an alternative to both directive counseling, which explicitly advises women against childbearing, and nondirective counseling, in which a woman is given relevant information and then left to make her

Table 1. Step 1: Step 2: Step 3: Step 4: Step 5: Step 6:

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Context-Based Advocacy Establish a relationship with the HIV-positive woman Provide current, relevant information Facilitate the woman’s understanding of information Share personal and societal values Support the woman in making her decision Assist the woman in accessing needed resources

decision. A review of nursing literature on ethics and advocacy identified a framework of advocacy developed by Gadow (1980a, 1980b) and further explicated by Corcoran (1988). The authors have adopted Gadow’s framework as the basis for developing an advocacy process for assisting HIV-positive women who are deciding whether or not to bear children. Drawing heavily on Gadow and Corcoran, the authors propose six interactive steps by which nurses can promote women’s autonomous, informed decision making (see Table 1). Like Corcoran, the authors illustrate each step with a vignette to provide concrete examples. The authors do not propose that these steps cover all possible dimensions in the interactions between nurses and women; interactions may vary in different contexts and environments. However, the steps represent the essential areas to be included in the advocacy process. They describe an ongoing and developing process and are meant to be iterative as the situation demands. Ideally, the process would be conducted across a series of interactions, allowing time for a woman to absorb information and reflect on her own responses. Step 1: Establish a Relationship With the HIV-Positive Woman Being in a relationship with another person entails being genuinely present, giving time, actively listening, and sharing feelings in a way that is not coercive or burdening to the other. Being there is essential because it conveys not just physical or emotional presence but also the message of acceptance and availability. Open communication involves avoiding assumptions and invites both parties to share themselves and their perspectives. Commitment and patience demonstrate a nurse’s caring and willingness to establish a relationship with a woman.

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Vignette: Barbara is a 26-year-old woman who was referred to an HIV clinic. She is still numb from receiving the diagnosis of HIV infection. She has no children and is concerned about having a baby. Mary, the nurse in the clinic, sits down with her in the examining room and says, “How are you feeling today?” Barbara replies, “Well, I feel okay right now, but I’m scared about what’s going to happen.” Mary responds, “Do you want to talk about your concerns?” Barbara confides, “There are so many things, but my main concern is I’ve always wanted to be a mother, but now I’m afraid I won’t be able to.” Clarification of the roles of the nurse and the woman is essential to establishing a relationship focused on the woman’s needs. Once a relationship is established, the woman may feel comfortable in raising the issue of whether or not to become pregnant. The nurse’s availability and active listening allow the woman the opportunity to bring up her concerns. Step 2: Provide Current, Relevant Information Knowledge can help in empowering and enabling one to make informed, autonomous choices. This includes providing information and explanations, eliciting feedback, and assisting in focusing on important issues. Relevant information should be given, including rates of transmission, current knowledge about the effects of treatment on both the mother and the baby, and possible pregnancy outcomes. Other essential issues should be discussed, such as the costs and availability of treatment, access to other resources, and possible effects of the pregnancy on the woman’s HIV disease (Kass & Faden, 1996). Vignette: Mary, the nurse, asks, “Tell me what you know about pregnancy and HIV.” Barbara replies, “I don’t know anything! The only thing they told me was not to have sex without a condom, and to come here to the clinic right away.” Mary responds, “It’s really your decision whether to have a baby or not. Of course, with HIV there are many things you should know before you make that decision. Would it help if

we talked about what you need to know in order to decide about having a baby?” Barbara answers, “That would help a lot!” Mary then provides current information on a variety of relevant topics, presented in everyday language. Nurses are responsible for providing current and easily understood information. According to Kass and Faden (1996), most women want clear, direct, factual information to be given in a respectful manner. Information given in clear and simple ways facilitates better understanding and promotes autonomous choices. Once the information is provided, a woman will need time to think about it and help in processing what she has learned. Step 3: Facilitate the Woman’s Understanding of Information Knowledge is one of the key points in understanding a phenomenon and can stimulate a woman to further explore the implications of her situation. However, to be useful, information needs to be processed and understood. The step of facilitating understanding provides the woman the opportunity to ask questions and allows a nurse to elicit feedback on the woman’s understanding of the information that has been provided. Vignette: After providing information, Mary asks, “What do you think about the things we have talked about? Do you have any questions?” Barbara replies, “After thinking about everything you told me, I feel like I still want to have a baby. I’m really healthy now, so I’m sure the baby will turn out fine.” The nurse replies, “I can understand that you feel it’s important for you to have a baby. From what we talked about, what are some of the things that can happen with an HIV pregnancy? What are some things we discussed that you can do to make it safer for you, your partner, and your baby?” Asking for feedback allows a nurse to assess a woman’s understanding as well as identify misconceptions that the nurse can address. An open dialogue about what the woman believes is true regarding HIV

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and pregnancy can build her knowledge base and increase her confidence in her ability to make an informed decision. She will need to incorporate factual information, along with personal and societal values, into her autonomous decision. Step 4: Share Personal and Societal Values Gadow’s (1980b) conceptualization of existential advocacy, also discussed by Corcoran (1988), encourages nurses to disclose their own values when talking with patients, to interact as full human beings, and to assist patients in clarifying their own values. The authors depart from that approach and propose a variation. In this proposed advocacy process, a nurse elicits a woman’s feelings about having a baby and about motherhood in the presence of HIV and then provides varying societal views as a counterpoint. The resulting dialogue is intended to stimulate the woman’s thinking and broaden her perspective, leading to a decision that reflects consideration of her own values and priorities as well as society’s views. The nurse should be aware of and willing to openly discuss prevalent societal values and opinions regarding childbearing by an HIVpositive woman. Such sharing of views should be done with great care so as not to be coercive, emphasizing that the decision remains the woman’s. However, by openly discussing different points of view, the nurse can promote consideration of all aspects of the situation and help the woman balance the risks and benefits, as she understands them (Corcoran, 1988). Vignette: Barbara comments, “You need to understand, I’m already 26. My life won’t really be complete if I never have a child. But I know that many people will think it’s wrong because I have HIV.” Mary replies, “People will think different things about pregnancy and HIV. Some may think it’s not right to take the chance of anyone else—your partner or your baby—getting infected with HIV. They may also worry about how society can afford to take care of everyone if many more people get infected. These are things to consider as you make your decision. You will need to think carefully about all of these things and how they fit with your own situation and the

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things that matter most to you. It’s not easy talking about all this, but it may help you to get clear about the pros and cons of having a baby. What are some of your feelings about having a baby?” Barbara responds, “I’ve always wanted to be a mom. I love kids! And I know my family is willing to help me.” Mary asks, “How much help can you count on from your family? Would someone take over for you if you got too sick to raise the baby? That might make a difference in how well you’ll be able to carry out your decision once you make it.” Encouraging a patient to share meanings and feelings facilitates her engagement in the process of identifying relevant information to consider in making her decision. By offering possible conflicting views, a nurse stimulates the woman to consider the range of alternative choices. Although some may disagree with the nurse’s discussing opposing points of view, this is consistent with the nurse’s advocacy role in such a dialogue. Presenting differing views makes women aware of the many issues to consider in making balanced decisions. By bringing balance to the decision-making process, the nurse can help the woman make a fully considered decision that is consistent with her values and priorities. Step 5: Support the Woman in Making Her Decision Supporting an HIV-positive woman’s decision involves communication on the part of a nurse that emphasizes the woman’s ability to know what is in her own best interest. The nurse’s support conveys acceptance of the woman, preserves her dignity, and empowers her autonomous decision making. Vignette: Barbara says to the nurse, “You know, I can see the pros and cons, and I still want to have a baby. I plan to talk it over with my family and my partner, but I know they’ll agree. I just think this is what’s right for my situation.” Mary replies, “You have given this a lot of thought. You are the best judge of what to do here. I understand that having a baby is what you have decided is right for you.”

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Once a woman has arrived at a decision, she may need assistance in accessing the resources that would enable her to successfully carry out her decision. Advocacy includes connecting the woman to resources within her family, health care setting, and larger community. Step 6: Assist the Woman in Accessing Needed Resources Once a woman decides in favor of childbearing, she must begin to build for herself and her child a future characterized by uncertainty. She may need help in gathering information and referrals for available resources. She may also need to learn to navigate within a variety of social service and health care organizations. A nurse can help the woman develop a support network within her community that will serve as a safety net to help her meet a variety of needs. Vignette: Mary says, “Now that you have decided you want to have a baby, let’s see what the clinic can do to help everything go well for you.” She offers Barbara information in the form of pamphlets about resources in Barbara’s community. She also introduces Barbara to Anna, a volunteer worker who is a community member and an HIVpositive mother. Mary adds, “Barbara, I would like to refer you to Cara Jones, a nurse-midwife who works with HIV-positive pregnant women. She will be able to guide you through this experience. You can always give me a call with questions, and if I’m not the best person to help, I’ll hook you up with someone who is. Always remember to keep asking questions until you get the information you need. That’s one of the biggest things you can do to help yourself and your family.” During this step in the advocacy process, nurses can use their positions within the health care arena to advise women on how to access the health care system and how to overcome obstacles to care. Nurses can also provide information about community service organizations and assist with referrals. This encouragement and assistance will empower women to better advocate for themselves.

Nursing Implications This approach to nursing advocacy has several implications for nurses working with HIV-positive women. Although the ethical principles of beneficence, autonomy, and justice should be incorporated in assisting HIV-positive women in their decision-making processes, advocacy calls for a more contextual ethics. Respect for women’s decisions is vital, even when it conflicts with nurses’ views. The tension between societal values and HIVpositive women’s values must be reconciled cautiously to preserve women’s autonomy. There is a fragile balance between women’s rights to make their own reproductive decisions and society’s concern about the consequences of those decisions. Nurses and other health care professionals are not to decide what is best for women; only women can make these decisions, guided by their own beliefs and values (Gadow, 1980b; Locher, 1996). However, nurses have a responsibility to bring forth society’s viewpoint for women to consider before making their decisions. The decision whether or not to become pregnant is often a complex one for HIV-positive women. For nurses to care for women holistically, they need to be aware of the range of factors influencing women’s decisions. The cultural beliefs and practices that influence women in making moral choices are derived from a societal context. Therefore, the distinction between individual factors and societal factors is not well delineated. The overlap between these factors is often a source of ambivalence for women. Nurses’ advocacy role is to enter into this complexity with women and help them clarify the values that motivate them (Gadow, 1980a). The steps that the authors introduce in this article illustrate the key elements in this advocacy process. These steps involve establishing a relationship and conveying acceptance. Providing current information in clear and simple terms enables women to make informed decisions. Assuring women’s understanding of this information is vital. Sharing personal and societal values is done openly yet respectfully. Providing support for women’s decisions and help in accessing appropriate resources are important final elements of this advocacy process.

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The unique relationship between a nurse and a client makes the nurse an ideal health care professional for the advocate’s role. However, in the desire to fulfill this role, the nurse must avoid creating or fostering a climate of paternalism. The proposed model of advocacy promotes patients’ self-determination and avoids paternalism. The goal of such advocacy is to support women’s autonomous decision making in a way that is informative and empowering. A nurse’s decision to be an advocate is the nurse’s moral choice. There are many models of advocacy proposed in caring for patients. However, the interpretation and successful implementation of these models remain problematic. Advocacy may involve personal and professional risks and potential legal consequences. The nurse who is willing to embrace the role of advocate despite the risks involved should be aware that the role is continuously being challenged, questioned, and redefined. The ability to effectively advocate for HIV-positive women is one that may need to be developed among nurses. An initial step is to encourage nurses to examine their own beliefs regarding the reproductive choices of HIV-positive women. Unexamined biases are likely to unconsciously communicate themselves and interfere with effective communication. Nurses must also educate themselves continually to maintain current factual information to share with women. Staying up to date can be done through Internet resources, as well as by commitment to the regular reading of relevant journals. Nurses will need strong communication skills to advocate for HIV-positive women. In basic nursing curricula and in continuing education workshops, nurses can develop and practice therapeutic communication and assertiveness skills. They can practice assertive communication in their workplaces as they promote an environment conducive to meeting the needs of HIV-positive women. Nurses can also compile lists of referral sources and other resources to share with women as needs are identified. In these ways, nurses can assist women to access the resources they need to carry out their decisions. The authors acknowledge that the advocacy process they describe, when carried out in the context of U.S. culture, focuses strongly on the rights of women to make self-determined choices. This focus on autonomy is a part of Western cultural values. The authors propose a dialogue in which nurses from other

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countries and cultures discuss what the advocacy process would entail if carried out in the context of their cultures. The authors also invite a dialogue with others who would primarily advocate for children or for society at large.

Issues Raised in Advocacy for HIV-Positive Women For many women in society, especially women who are most at risk for HIV infection, the issue of childbearing is often not a choice but a cultural and gender role expectation. Many factors taken together contribute to this situation; these factors perpetuate the powerlessness of women, especially ethnic minority women, who constitute the greatest number of HIVpositive women. Gender inequality puts women at risk for physical violence in some cases if they act to prevent or terminate pregnancies. Their one-down position in relationship to their male partners makes it very difficult even to establish consistent condom use. Poverty and a lack of educational opportunities contribute to the reality that for many women, motherhood is one of the few personally meaningful and socially acceptable roles available to them. Women’s religious convictions often restrict their choices regarding childbearing. For many, condom use may be precluded by their religious values, and the termination of a pregnancy is not an option. Childbearing thus becomes the default action, less a choice than a natural consequence of societal pressures exerted on many women. It is in this context that nurses enter into dialogue with HIVpositive women. Nurses need to be aware of the many and conflicting motivations with which women must grapple. By establishing advocacy relationships with women, nurses can help them consider all of the factors involved in their situations and make the best decisions for themselves that fit their needs and realities. To those who would say that it is absolutely irresponsible for HIV-positive women to take the chance of transmitting the virus to their children, or to take the chance of leaving physically vulnerable children bereft of parenting, the authors propose several points. First, society’s usual stance is that parents are the appropriate persons to determine the acceptable level of risk regarding the chance of transmitting a health condition to a prospective child. Parents who carry

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genetic conditions such as Tay-Sachs disease or cystic fibrosis make such decisions regarding childbearing. Parents who themselves have conditions that may worsen and lead to death likewise are free to decide to procreate. Because society has not chosen to interfere in these situations, there is little justification in singling out a particular group for restriction. Second, if the right to bear children is to be abridged, society has a duty to ensure that this restriction is undertaken for the right reasons. The fact that HIV-positive women are also very likely to be marginalized and vulnerable economically, educationally, and politically makes it imperative that society do all it can to ensure that their rights are preserved. If the majority of HIV-positive women were less vulnerable, would their choices to have children be viewed more favorably? Third, the likelihood that an HIV-positive woman in the United States will bear a child free of HIV greatly exceeds the chance that she will transmit the virus to her child. Since the advent of antiretroviral therapies, the transmission rate has fallen dramatically and is reported at 1% to 6% (Garcia, 2000). This translates to a 94% to 99% chance that with appropriate prophylactic treatment, the child will be free of the virus. Fourth, many HIV-positive women become pregnant as a result of their powerlessness to ensure consistent condom use by their partners. The same reality leads to their becoming infected with the HIV virus. Over half of HIV-positive women acquired the virus through heterosexual encounters with infected men (Centers for Disease Control and Prevention, 2000). In her one-down position, a woman is unable to protect herself from both the risk of HIV infection and the risk of unwanted pregnancy. Yet society’s focus is on her irresponsibility in taking the chance of infecting her child. What is lacking and may be more to the point is a focus on her male partner’s irresponsibility in having unprotected sex with her, after engaging in behaviors that put him at risk for acquiring the HIV virus.

Postscript In exploring this topic and developing this article, the authors became aware that their dialogue mirrors that which they describe as part of the advocacy process itself. Although the authors are a diverse group in

terms of age, culture, and nursing specialty, the trusting relationship they established enabled them to enter fully into this effort. The authors gathered, shared, and clarified relevant information on a variety of issues. They listened carefully and respectfully to one another’s opinions and brought out conflicting views to be considered and dealt with. The authors took the roles of both the nurse and the woman, alternating between asking themselves about their motivations and values and posing societal values that might come into conflict with their own. The authors made fully considered decisions and supported one another’s individual roles and contributions to the process. And they assisted one another in concrete ways to carry out the decisions they made together. The authors’ experience of working together modeled for them the satisfaction and empowerment to be found in this advocacy process. The authors believe that this process will be useful to nurses in many settings who desire to assist patients in making their own self-determined choices.

Acknowledgments The authors gratefully acknowledge the contribution of Dr. Beverly McElmurry, whose generous mentoring, careful reading, and insightful comments contributed to the development of this article. This work was supported in part by the National Institute of Nursing Research, National Institutes of Health, Primary Health Care Research Training (Grant #T32 NRO 7079); and the John E. Fogarty International Center, National Institutes of Health, AIDS International Training and Research Program (Grant #D43 TW 01419).

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