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Features JANAC Vol. 15, No. 5, September/October 2004 ARTICLE 10.1177/1055329003261981 Carr, Gramling / Stigma: A Health Barrier
Stigma: A Health Barrier for Women With HIV/AIDS Rebecca L. Carr, PhD, RN, CS Lou F. Gramling, PhD, RN, CS
The stigma experienced by women with HIV/AIDS is much like that of Hester Prynne in The Scarlet Letter. At the time of diagnosis with HIV/AIDS, women already are aware of the stigma associated with the disease. They immediately see themselves differently and believe others do also. The purpose of this article is to explore the multidimensional effect of stigma on women’s efforts to promote, maintain, and enhance their health. The experiences of the women in this study tell of rejection by family members, friends, health care providers, employers, and church members. This rejection caused by stigma affects access to health care, medication adherence, social interaction, and social support. Interventions are needed to decrease the impact of stigma on women with HIV/ AIDS so they can achieve a higher level of wellness, increase their life span, continue in the workforce, and improve their quality of life. Key words: HIV/AIDS, women, stigma, health barrier, disclosure
In Hawthorne’s (1850) novel, The Scarlet Letter: A Romance, Hester Prynne was found guilty of adultery, forced to wear a scarlet A on her bodice front, and relegated to a place in society deemed appropriate for someone who had committed such a grievous sin against God and society. Her passions and illicit behavior made her unfit and unclean in society’s eyes. Although Hawthorne’s novel was set in the 1600s, the treatment that women with HIV/AIDS receive today is disturbingly similar to Hester’s.
The purpose of this ethnographic study was to determine the beliefs and behaviors European American women use to maintain, improve, or enhance their health after being diagnosed with HIV/AIDS. Questions pertaining to these topics were asked. In the course of data analysis, the researcher uncovered the encompassing effects of stigma on women diagnosed with HIV/AIDS. Prior to diagnosis, the women were aware of the existence of HIV/AIDS but believed they were safe from contracting the virus. This unfamiliar disease happened to “others.” When the women became one of the others, they braced themselves for the stigma-related rejection. The fear of stigma was so overwhelming that on diagnosis, the women were not concerned with the possible physiologic changes or death but rather the psychosocial ramifications that accompany this disease. This fear became a barrier to women achieving the goals necessary for them to maintain and enhance their health. According to the Centers for Disease Control and Prevention (2002), the number of women with HIV/ AIDS continues to increase. Women with HIV/AIDS are not rare but hidden. The authors’ experiences indicate that most people cannot name one woman they know who has HIV/AIDS. On the other hand, when questioned, most individuals can think of one or more males who have HIV/AIDS. As the number of women with HIV/AIDS continues to grow, why are people not more cognizant of this fact? Why are they not more Rebecca L. Carr, PhD, RN, CS, is an assistant professor in the School of Nursing at Clemson University. Lou F. Gramling, PhD, RN, CS, is a professor in the School of Nursing at University of South Carolina–Aiken.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 15, No. 5, September/October 2004, 30-39 DOI: 10.1177/1055329003261981 Copyright © 2004 Association of Nurses in AIDS Care
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aware of the women who suffer from this disease? The women in this study repeatedly talked of the stigma associated with this disease and their attempts to lessen the impact by controlling the number of people who were aware of their diagnosis. Perhaps that is the answer to why no one knows that the mother, sister, or daughter living next door has HIV/AIDS. Women with HIV/AIDS do not want to become the Hester Prynnes of today. According to Goffman (1963), stigma is an attribute that reduces a person in the minds of others “from a whole and usual person to a tainted, discounted one” (p. 3). Such things as physical abnormalities, character blemishes, and racial or religious affiliations can stigmatize a person. Stigma is deeply discrediting and signifies blemishes of individual character perceived as weak will, domineering or unnatural passions, treacherous and rigid beliefs, and dishonesty. Stigmatized individuals possess a characteristic that labels them as different in a negative way. Society exercises a variety of discriminatory tactics against people they stigmatize. In women with HIV/AIDS, both the terminal nature of the disease and the societal implications of sexual deviancy result in the stigmatization that they confront when others discover their diagnosis. Since HIV/AIDS was first detected in the United States, people with the disease have been subjected to stigma (Herek, 1999). Stigma associated with HIV/ AIDS has been demonstrated to have a negative impact on social interaction, employment opportunities, emotional well-being, and self-personification (Fife & Wright, 2000). Such suggested punitive measures against people with HIV/AIDS have included quarantine, universal mandatory testing, and tattooing (Herek, 1999). When the first cases were diagnosed in gay men, they were labeled as promiscuous and deserving of the disease because of their “unnatural” lifestyles (Shilts, 1988). As drug abusers were infected, they too were enveloped in the stigma. After all, people reasoned, had the individuals not used drugs they would not be infected. The early cases reported in women were attributed to their being prostitutes or drug abusers and the source of HIV/AIDS in servicemen (Burkett, 1995; Shilts, 1988). The difficulty of female-to-male transmission was ignored. The stigma of HIV/AIDS is linked to everyone who is diagnosed regardless of their age, innocence, morality, gender, or race.
This article focuses on the health barriers associated with stigma as women seek to promote, maintain, and enhance their health and well-being after being diagnosed with HIV/AIDS.
Method An ethnographic methodology with repeated interviews and observation participation was used to gather data. A purposive sample of 9 European American women with HIV/AIDS was recruited using volunteer and networking sampling techniques. The sample was limited to European American women because health beliefs and practices vary between cultures (Leininger, 2002), and ignoring these differences results in cultural blindness (Clark, 1984) and complicates data interpretation (Morse, 1995). In-depth interviews regarding the participants’health-promoting lifestyles and observation-participation (Wilson, 1989) were conducted during a 2-year period (1995 to 1997) to collect data. One participant was interviewed once, 3 participants were interviewed twice, and 5 were interviewed three times for a total of 22 interviews. Audiotaped interviews took place in a variety of places chosen by the participants. Many times the researcher was invited to the participants’ homes, enabling the researcher to meet family members and friends. Four participants contacted the researcher regularly throughout the study to provide updates regarding health changes and other important life events. These encounters, in addition to seeing the participants at conferences and volunteer organizational meetings, provided the researcher with observationparticipation data. Data analysis was concurrent with data collection, and participants were consulted to discuss, expand, and confirm findings. Human assurance was procured from the appropriate agencies, and informed consent was obtained prior to enrollment in the study. All data were kept in a locked safe and any identifying information was removed to prevent breaching the confidentiality of the participants. Sample Characteristics The 9 women in the study ranged in age from 27 to 52 with a mean age of 37 years. The women were married, divorced, widowed, and single; 1 participant was
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a lesbian. Two participants had adult children and 2 had children younger than the age of 10. Four participants were employed full-time and 1 part-time; the remainder were unemployed or on disability. Seven participants contracted HIV/AIDS through heterosexual contact, 1 as a result of a sexual assault, and another via a blood transfusion, and 5 of the women had been diagnosed with AIDS.
Stigma Leads to the Redefinition Stigma associated with HIV/AIDS has multidimensional effects on women’s health and well-being. The stigma was so overwhelming for the women in this study that after diagnosis, they never perceived themselves in the same way. They may have been mothers, sisters, wives, teachers, secretaries, or designers prior to diagnosis, but afterwards they were simply women with HIV/AIDS. The diagnosis overshadowed everything they had been, everything they had accomplished, and totally redefined who they were. Past successes were negated by the diagnosis, whereas failures were maximized. One young woman, Sonya (all names used are pseudonyms), stated this effect of the diagnosis very clearly when she said, When I look in the mirror, I no longer see Sonya. I see a woman with HIV disease. It is the first thing I think about when I wake up in the morning and the last when I go to sleep at night. Diane further confirmed this with her statement: I try so hard just to go on about my business, do what I got to do and just don’t think about it, but it’s always there. It’s always in my mind and the harder I try it seems to be a little bit stronger than I am. These participants believed that everyone that knew of the diagnosis possessed the same feelings. Women blamed themselves because they had preconceived stereotypes regarding HIV/AIDS, believing that the disease occurred only in the promiscuous, immoral, or drug-abusing female. None of the women in this study considered themselves at risk for HIV/ AIDS. They acknowledged that to contract the virus,
all one had to do was have a single sexual encounter with an infected individual, but then they would quickly reassure the researcher of their cleanliness and high moral standards. One of the older participants reported, “There’s no one cleaner than me.” Another, when recounting her experience with reporting her sexual contacts to the health department, as is the law in her state, said, “You know I had to give names. I was never promiscuous. It was two guys out of all these years.”
The Many Faces of Stigma At the time of diagnosis, the participants were already aware of the stigma associated with HIV/ AIDS. They personally faced the harsh reality almost immediately on diagnosis. Physicians who told them of their HIV-positive status warned them to tell no one because they would be shunned and rejected. As one young woman related about her diagnosing physician, The first words out of his mouth after he told me it’s the worst were, “Keep your mouth shut. Find you a good doctor and keep your mouth shut.” She had a 2-hour trip home and remembers very little about the drive. All the women found this rejection to be prevalent as they told family and friends, employers and coworkers, health care providers, and church members. The fear was so great they had dreams about people discovering their diagnosis and throwing rocks at them or sending them to a faraway island. As one young woman put it, It’s hard ’cause you’ll be wanting to tell somebody but you say no, you can’t let them know ’cause what will they think? The following descriptions relate the women’s experiences with stigma as they navigated through life after their diagnosis with HIV/AIDS. With each disclosure, they were reminded of the stigma of HIV/AIDS. Revealing to Family and Friends The first persons told of the HIV/AIDS diagnosis were close family members or friends. Sometimes
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family members were supportive, but often this was not the case. The participants were devastated by their negative reactions. Some family members reacted with anger and disgust for years after the diagnosis. One participant described the constant rejection in this way: I try so hard to be close with my family, but they sure make it hard. I try to understand how they feel about me. Some of the things my mother says about me being sick and stuff I think she could do without saying. It makes me feel worse. Another reported her mother screaming profanities at her and saying, “I knew he’d end up killing you but I didn’t think it would be like this.” This same young woman was asked by her brother to keep her diagnosis a secret to avoid embarrassing the family. On learning of the participants’ diagnosis, family members asked them not to attend family gettogethers because they did not want to eat food prepared by someone with HIV/AIDS. One woman learned of this when her sister-in-law called her, crying: I asked, “You talked to them about Christmas, didn’t you?” She said, “Yeah, they don’t want to eat your food.” This participant believed that she had been infected by her husband, the brother of the fearful relative. Family members were reluctant to allow their small children to visit their grandmothers, aunts, and cousins who had HIV/AIDS. One participant who told her daughter, but not her son-in-law, cried as she explained, He doesn’t know, and my daughter is afraid if he were to know he wouldn’t let the children visit. At times I don’t care if the whole world knows, but then I think about my grandkids. Parents were afraid casual contact would result in their children being infected. Friendships often suffered after the diagnosis was revealed. On learning of her diagnosis, one
participant’s best friend totally rejected her on hearing the news. I will never forget. In 5 seconds I went from best buddy to “you people.” She said, “You people have to realize how frightened we are,” and I said, “I am scared to death right now. I am shaking all over.” This friend had been her partner in “barhopping” for years. The participant was certain that was how she had contracted the virus. This made her friend’s rejection even more difficult to understand. After several years of trying, the friendship did not survive, and the participant no longer has contact with this person. Some stories of potential rejection had happy endings. One young woman told her closest and dearest friend, who was a nurse, and was immediately comforted by her. Unfortunately, the friend’s husband was so angry he forbade his wife to have the participant or the participant’s children in their home. The participant reported the friend’s reaction in this way: She told him that we’d been best friends longer than she’d been married to him, and that if he wasn’t going to educate himself and deal with it, that if he would, he’d know that there’s no way for me to give it to her or her kids unless we slept together. We’ve been best friends for 21 years and had not slept together yet, so she didn’t think it was going to happen, and for him to just wise up or he could leave; that she would make him leave before she put me out of her life. The husband did take steps to learn about HIV/AIDS, and at the time of this research study, was so comfortable with the participant he hugged her every time he saw her. Employers and Coworkers: To Tell or Not to Tell Whether to tell employers was a dilemma faced by all the women. The major concern of the participants was the impact it would have on their employers and
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coworkers. Some believed they should tell in the event they could no longer fulfill their employment obligations. Others who worked with dangerous equipment were fearful they would be injured on the job and a careless coworker would become infected from the participant’s blood. Some employers were very professional and offered ways for the women to avoid revealing their HIV status. One woman who worked with dangerous equipment told her employer she was going to tell her coworkers immediately if she was injured on the job. His instructions were, No. You tell them to put on gloves and wash everything down like they are suppose to do, and if they say anything, tell them you are protecting yourself from them. They might have hepatitis or maybe they didn’t wash their hands after they went to the bathroom. When informed of the diagnosis, some employers asked the women not to reveal their diagnosis to coworkers; others encouraged them to quit. One participant’s employer fired her when she disclosed her diagnosis. Another woman recounted her experience this way: My employer flipped out—totally flipped out. She just couldn’t handle it. When I told her [I was HIV-positive] she was on the other side of the table, and it was like I could feel her wanting to back up. She was so uncomfortable with me around, I quit. The participants who chose not to reveal their HIV/ AIDS reported increased stress from having to hide medications and explain the various side effects from the medications. One individual stated, My job was very stressful. I was in retail management. I had to hide my medicine, and you know AZT is toxic, and if I felt bad [expletive deleted], I still had to go to work, and nobody knew except one woman. She was wonderful. I avoided everyone else. Another quit her job and ended all contact with her coworkers to avoid revealing her diagnosis. Multiple
rumors had surfaced, and she had difficulty continuing her work with the resulting tension. She said, People assume things without you even telling them. I wonder if it wouldn’t be better to tell them the truth to keep from all the other things they are gonna be thinking. Since she lived in a small town, she often saw her former coworkers who inquired about her health. She never disclosed her disease to them. Some women had coworkers who were supportive and helpful. They reported that their honesty made their lives less stressful and their workplaces more enjoyable. One young woman on disability was a volunteer at a health center. She chose to relinquish her disabled status to accept employment at the same agency and found the camaraderie with her coworkers a major source of emotional support. Stigma and Health Care Providers Despite expectations by the participants that people in the health care arena were more educated and would be more accepting of people with HIV/AIDS, the women found this not to be true. They also realized that acceptance by one provider at a site did not guarantee the same from others at the same site. Many health care providers reacted with disgust, disdain, and fear, with physicians often being the most vocal. One young woman asked her physician multiple questions when he gave her the diagnosis. In response to her questions, he said, “It doesn’t matter anyway. You’re gonna die.” She was devastated and sought health care from another physician. Another participant was referred to a gynecologist for an examination. She described her experience in this way: I had a pap smear and he said, “Well, if you’ve got HIV, this [the pap smear] should be the last thing you worry about. This would be the least of your worries.” And I was like “That’s something to say.” One young woman moved to a new area and was seeking a family physician to care for her when she had minor aches and pains not associated with HIV/
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AIDS. She related how she had explained her situation to the office manager and the reply she received: “Call me back tomorrow. We’ll have to discuss it. There are four doctors in our group.” And I called her back and she said, “We’ve all discussed it. There is nothing we can do for you. We can’t help you so there is no reason to risk our normal patients by taking you in.” Needless to say, the young woman was angry, sad, and disheartened about this rejection. One woman was refused treatment by a urologist, although he had radiological evidence of her kidney stone. He referred her to a large teaching hospital 2 hours away. Dentists also made it clear that they preferred that someone with HIV/AIDS seek treatment elsewhere. One participant alerted her dentist, and he questioned her regarding her symptomatology and cell counts. This is the exchange that followed: He said, “Well, that’ll be all right for right now, but when things start getting really bad for you, we’ll have to dump you.” I said, “No, you won’t. I just dumped you. I will not be back. I can promise you I am not the only HIV patient you have. I am just the only one who has told you.” One young woman revealed her HIV/AIDS status to the dental hygienist only to have her leave her side in the middle of the examination. The hygienist went one step further—she left the building and her job. The dentist had to complete the cleaning procedure. One participant summed up her frustration in this way: What have I got that these people are so frightened of? They are supposed to know how to deal with this. They are supposed to know I am not dying right this minute. Another aspect of stigma was the discrediting of all physical complaints by health care providers. Every rash, pain, or discomfort was attributed to HIV/AIDS. The health care providers did not recognize any complaint as anything but a clinical manifestation of HIV/ AIDS or its medications. One young woman ended up with a gallbladder so inflamed she required intravenous antibiotics for days prior to surgery. This same
individual developed an ulcer that was treated as a side effect of the antivirals for weeks before they made the correct diagnosis. The women in this study learned to be persistent, even aggressive, to ensure appropriate care when needed. Some had to change physicians to obtain adequate care. Churches: A Source of Support? For those participants who were active in a church, the greatest surprise was the reaction of the members and the ministers. Their ministers ignored them. When they were ill, the ministers did not bother to visit or call. Sonya, a very active church member, told this story: I had to address the issue of how the church was handling it because fear and ignorance were rampant at that point. It was the only way it was going to keep the wrong rumors from flying, because it was getting back to me that someone said I had AIDS and my baby was dying. I was like, please, if you’re going to tell it at least tell it right; if you’re going to talk about me, let’s get it right. I told them what the situation was, that they had nothing to worry about being around me or my children. It did get nasty about the nursery, and I ended up coming out of the nursery. There’s a lot of times I’ve left church thinking “I thought these were Christian friends.” At the time of her second interview, she revealed she eventually sought guidance from another church. In her new church, she never achieved the same high level of involvement. What could have been a loving and nurturing environment for the participants turned out to be a source of pain and rejection. Secrecy Is Stressful After obtaining the results of their HIV/AIDS status, the women in this study never saw themselves in the same way again. The enormity of the diagnosis and the resultant repercussions were overwhelming to the women. They had to deal not only with the threat of death, at times being advised incorrectly that it was imminent, but also, most important, with the stigma attached to this diagnosis. Though none knew of any
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other woman who had HIV/AIDS, all were aware of the negative beliefs surrounding this disease. These women knew they would be accused of promiscuity, sexual deviancy, and/or drug abuse. Although the idea of not telling anyone briefly entered their thoughts, it did not take hold. The women knew they had to tell someone and whom they told became the major decision at the time. The person they chose was someone they trusted to keep their secret and offer support. Beyond this initial episode of sharing, the women struggled with telling anyone else. Many chose not to tell other people. They attempted to hide the numerous pills, the pharmacological side effects, and the frequent doctors’appointments. However, this choice did not go without a psychological and physiological price of its own. As one woman put it, “The secret was killing me faster than the disease.” When Angela was asked about the effects of not telling, she replied, Keeping it secret is more stressful than telling. The stress will kill you. You try to keep it all balled up inside and not tell anybody, where if you tell somebody, then you have somebody to talk to, and sometimes that’s all you need is somebody to talk to. The women in this study found that although secrecy protected them from rejection and pain, it also led to isolation. They would make excuses to avoid seeing old friends, and making new friends was a daunting task. Angela believed she had no choice. She said, I didn’t want anybody to know. I didn’t want that label they put on everybody. I thought about my family and worried about how the public would respond to them. Patty echoed this reaction when she said, I avoided everyone. I didn’t want to go see my parents. You know I didn’t want to be with old friends. I cut myself off from a social life. I isolated myself so I wouldn’t have to tell. Fear of rejection and ostracism invaded not only every waking moment but also their dreams. Diane described her experiences this way,
I’ll dream about people throwing stuff at me— people that in real life are my friends; that I expect to like me. I also dream about people I used to work with. I’ll be dreaming that they found out, and wherever I went that they were, they’d be throwing things at me. Sonya’s dreams were hauntingly similar: I had nightmares that they rounded up all the HIV-positive people and put us in a concentration camp and kept us there until we all died so the rest of the world would not get contaminated by us. I still have them occasionally. The inner conflict caused by the fear of ostracism and rejection and the need to share their secret was a source of extreme stress for the women. They needed their family and friends, but they feared the stigma associated with HIV/AIDS would change the way their family and friends viewed them. After all, the women themselves no longer believed they were the same women they had been prior to diagnosis. The stigmatization associated with HIV/AIDS redefined the way the women saw themselves. Not sharing the diagnosis with others made the women feel dishonest, but sharing meant pain and rejection.
Honesty or Isolation? The stigmatization associated with HIV/AIDS has been referred to as a second epidemic because of the considerable impact it has on the lives of the individuals (Chesney & Smith, 1999). When women are diagnosed with HIV/AIDS, the psychosocial implications, rather than the physiological impact, become the focus. The women in this study immediately adopted the stigma (Goffman, 1963) they associated with having HIV/AIDS. In essence, they became what they feared. In adopting the stigma, they had to make decisions based on this new identity. Although research indicates that method of transmission affects the level of stigma, this was not true in this group of women (Herek & Capitanio, 1999). Those infected by their husbands or blood transfusions suffered as much stigma as those who contracted the virus from a sexual encounter with an unknown individual.
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Naturally, the first problem encountered was disclosing their HIV/AIDS status. When telling friends and family members, the participants had to deal with their loved ones’ irrational fears of transmission and moral judgments and the realization that these loved ones no longer viewed them in the same manner. This added further support to the beliefs of the women that they no longer were the same person. Not disclosing or selective disclosure leads to some level of isolation. Crandall and Coleman (1992) and VanDevanter, Thacker, Bass, and Arnold (1999) reported that lack of disclosure of HIV/AIDS status results in isolation, depression, anxiety, and alienation. The consequence of these could include not seeking health care, poor adherence to drug regimens, developing elaborate tales to cover HIV/AIDS-related illnesses, and loss of social support. Other studies reveal that the stigma from HIV/AIDS has a negative impact on social interaction, employment opportunities, psychological well-being, and self-perception (Link, Struening, Rahav, Phelan, & Nuttbrock, 1997; Miles, Burchinal, Holditch-Davis, Wasilewski, & Christian, 1997). These findings are indicative of the double-edged sword of disclosure.
Secrecy Becomes a Health Barrier The consequences of nondisclosure produce challenges related to the ability of women to promote, maintain, and maximize their health. The participants in this study were hesitant to tell anyone for fear of rejection. This was not limited to family members and friends but also included health care providers and employers. This hesitancy presented a barrier to their seeking health care and both formal and informal support. Taking medications and maintaining employment while not disclosing their HIV/AIDS status required they make choices regarding medication adherence. These challenges had the potential to limit their access to health care, social support, medications, and employment. Pender (1996) recognized that barriers in relation to health-promoting behaviors can be imagined or real and may result in avoidance of a certain action. Barriers are “the blocks, hurdles and personal costs of undertaking a given behavior” (Pender, 1996, p. 69). The women in this study believed the
personal costs of telling family, friends, health care providers, and employers often were greater than the sacrifices of not telling. According to the literature, although women are more likely to disclose their HIV/AIDS status to employers than men, they are still hesitant to tell and often do not (Fesko, 2001). Some choose to quit their jobs rather than tell, and some tell only when it is necessary to adjust work demands to accommodate their health status (Caufield, Carey, & Mason, 1994; Fesko, 2001). The women in this study reacted in the same way. They resigned from well-paying jobs to keep from sharing their secret, or they watched their jobs taken away after disclosing their HIV/AIDS status to their employers. Fife and Wright (2000) reported on the problems associated with stigma and health care for women with HIV/AIDS. Women with HIV/AIDS are hesitant to access health care for fear of discovery. They are reluctant to take medications that identify them as being ill and require explanations. They feel compelled to tell the health care professional but worry that their confidentiality will be breached or the provider will reject or ridicule them. These reactions compromise their health care and negatively affect their lives. The women in this study experienced mixed reactions from their religious leaders. Despite research reports that religious beliefs and religious affiliations have a positive impact on quality of life, women use caution in revealing their serostatus to religious organizations because they fear condemnation (Fife & Wright, 2000; Flannelly & Inouye, 2001; Gilmore & Somerville, 1994). This deprives them of social support that has been readily available much of their lives and would now be helpful in dealing with this illness. If the women choose to keep their serostatus secret, they must avoid any situation in which they may have to reveal their diagnosis. This leads to a self-imposed isolation. According to the women in this study and other studies, the most serious impact of nondisclosure is isolation (Crandall & Coleman, 1992; VanDevanter et al., 1999). They believe this isolation is necessary if they choose to be less than honest with their family and friends, coworkers, health care professionals, and church members. The women believe by keeping their secret, they are denying others who they are. If they make the decision to reveal to everyone, they face ridicule, rejection, and pain.
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Surrey (1991) found in her research on women’s development that women grow through relationships. For women to have relationships that are meaningful to them, they must be honest. One participant acknowledged this when she said, “The closer you get to people, the more you reveal about yourself.” This isolation denied them the ability to grow through relationships and share an important aspect of their lives. One woman was honest when she stated, “I did not tell my family for years. It was real difficult. It hurt a lot. I have to believe that.” The self-imposed isolation kept the women from obtaining the love and support they so desperately needed while they dealt with the ever changing physiological and psychosocial problems associated with HIV/AIDS. Whether the women chose to keep their secret or share their HIV/AIDS status with others, the decision resulted in increased stress. This stress was detrimental to the health and well-being of the women. Their health was already compromised by a hampered immune system and reluctance to seek health care from providers who considered them promiscuous and immoral. Holt et al. (1998) found that those who do not disclose immediately will eventually do so in an attempt to regain control of their lives and alleviate the stress associated with the secrecy. These findings were supported in this research study.
Nursing Implications The results of this study and the literature recognize that the stigma of HIV/AIDS is a phenomenon that has a negative affect on many aspects of women’s lives. The participants altered their self-perceptions (perceptions of self) on diagnosis of HIV/AIDS secondary to stigma. They spent endless hours and untold amounts of energy guarding their secret to avoid condemnation, rejection, and pain. The women delayed seeking health care, they avoided their family members and friends, and they concocted elaborate tales to hide medications and symptomatology secondary to medications and the disease process. Fife and Wright (2000) found that the affects of stigma in HIV/AIDS were perceived by those infected as far greater than the severity of illness. The results of
this study underscored these findings. The women reported their greatest fear after learning their diagnosis was not of death but of the negative reactions of others. This apprehension continued and required they plan each personal interaction in the event they be required to reveal their serostatus. They were always ready for the rejection they were certain would occur. Nurses should develop interventions aimed at decreasing the stigma and secrecy associated with HIV/AIDS. There is a high level of anxiety associated with living every day knowing the secret may be revealed. More support groups for women with HIV/ AIDS where unique experiences could be shared would be helpful. Also, the inclusion of role-playing sessions to prepare them for instances when their serostatus is revealed and rejection is a possibility would provide anticipatory guidance and potentially decrease fear. Resources for women whose multiple responsibilities present challenges to accessing health care should be developed. Such obstacles as lack of child care and transportation are problematic without the added complication of stigmatization. Even when available, how do women with HIV/AIDS arrange transportation and explain to child care providers the reason for seeking health care without revealing their serostatus? Providing these two services while protecting their privacy would facilitate their receiving adequate health care. There are still many misconceptions about HIV/ AIDS. Providing educational programs for churches, corporations, and civic groups would raise knowledge levels, alleviate unrealistic fears, and diminish the level of stigma associated with HIV/AIDS. The development of strategies to decrease the adoption of stigma by women with HIV/AIDS would be helpful in increasing positive self-perception and minimizing self-deprecation (Fife & Wright, 2000). Recognition of the far-reaching effects of stigma is not enough to help women with HIV/AIDS adjust. Nurses, as their advocates, must take steps to diminish it. The suggestions outlined above would lessen the reluctance by the women to access health care, adhere to difficult medication regimens, seek social support, and disclose their HIV/AIDS status to others. These also would facilitate the adoption of healthy behaviors in a more timely fashion resulting in a higher level of
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wellness, increased life span, retention in the workforce, and a better quality of life for the women and their families. Although much has been achieved in the past decade in the research arena pertaining to women with HIV/AIDS, there are still many unanswered questions. The rate of HIV/AIDS is increasing in those women who are already impoverished and disadvantaged (Karon, Fleming, Steketee, & De Cock, 2001). The social roles of women influence how they access the health care system, how they care for themselves (Gaskins, 2001), and ultimately how they adjust to the stigma of HIV/AIDS. The relationship between stigma in women with HIV/AIDS and access to health care needs to be explored.
References Burkett, E. (1995). The gravest show on earth: America in the age of AIDS. Boston: Houghton Mifflin. Caulfield, M., Carey, C. S., & Mason, C. Y. (1994). Project employ: Rehabilitation services facilitating employment of individuals with HIV/AIDS. American Rehabilitation, 20(3), 12-16. Centers for Disease Control and Prevention. (2002). Update: The AIDS epidemic in the United States, 2001. Morbidity & Mortality Weekly Report, 51, 592-595. Chesney, M. A., & Smith, A. W. (1999). Critical delays in HIV testing and care: The potential role of stigma. American Behavioral Scientist, 42, 1162-1174. Clark, M. (1984). Community nursing: Health care for today and tomorrow. Reston, VA: Reston Publishing. Crandall, C. S., & Coleman, R. (1992). AIDS-related stigmatization and the disruption of social relationships. Journal of Social and Personal Relationships, 9, 163-177. Fesko, S. L. (2001). Disclosure of HIV status in the workplace: Considerations and strategies. Health & Social Work, 26(4), 235-244. Fife, B. L., & Wright, E. R. (2000). The dimensionality of stigma: A comparison of its impact on the self of persons with HIV/ AIDS and cancer. Journal of Health and Social Behavior, 41, 50-67. Flannelly, L. T., & Inouye, J. (2001). Relationships of religion, health status, and socioeconomic status to the quality of life of individuals who are HIV positive. Issues in Mental Health Nursing, 22, 253-272.
Gaskins, S. W. (2001). Women and HIV: Across class, cultures, and countries. Journal of the Association of Nurses in AIDS Care, 12(4), 15-16. Gilmore, N., & Somerville, M. A. (1994). Stigmatization, scapegoating, and discrimination in sexually transmitted diseases: Overcoming “them” and “us.” Social Science and Medicine, 39, 1339-1358. Goffman, E. G. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon & Schuster. Hawthorne, N. (1850). The scarlet letter: A romance (2nd ed.). Boston: Ticknor, Reed, & Fields. Herek, G. M. (1999). AIDS and stigma. American Behavioral Scientist, 42(7), 1106-1116. Herek, G. M., & Capitanio, J. P. (1999). AIDS stigma and sexual prejudice. American Behavioral Scientist, 42(7), 1130-1145. Holt, R., Court, P., Vedhara, K., Nott, K. H., Holmes, J., & Snow, M. H. (1998). The role of disclosure in coping with HIV infection. AIDS Care, 10(1), 49-60. Karon, J. M., Fleming, P. L., Steketee, R. W., & De Cock, K. M. (2001). HIV in the United States at the turn of the century: An epidemic in transition. American Journal of Public Health, 91, 1060-1068. Leininger, M. M. (2000). Transcultural nursing and globalization of health care: Importance, focus, and historical aspects. In M. M. Leininger & M. R. McFarland (Eds.), Transcultural nursing: Concepts, theories, research, & practice (3rd ed., pp. 3-43). New York: McGraw-Hill. Link, B. G., Struening, E. L., Rahav, M., Phelan, J. C., & Nuttbrock, L. (1997). On stigma and its consequences: Evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse. Journal of Health and Social Behavior, 38, 177-190. Miles, M. S., Burchinal, P., Holditch-Davis, D., Wasilewski, Y., & Christian, B. (1997). Personal, family, and health-related correlates of depressive symptoms in mothers with HIV. Journal of Family Psychology, 11, 23-34. Morse, J. M. (1995). NIH and methodological melting pot. Qualitative Health Research, 5, 4-6. Pender, N. J. (1996). Health promotion in nursing practice. Stamford, CT: Appleton & Lange. Shilts, R. (1988). And the band played on: Politics, people, and the AIDS epidemic. New York: Penguin. Surrey, J. L. (1991). The “self-in-relation”: A theory of women’s development. In J. V. Jordan, A. G. Kaplan, J. B. Miller, I. P. Stiver, & J. P. Surrey (Eds.), Women’s growth in connection (pp. 51-66). New York: Guilford. VanDevanter, N., Thacker, A. S., Bass, G., & Arnold, M. (1999). Heterosexual couples confronting the challenge of HIV infection. AIDS Care, 10(1), 49-60. Wilson, H. S. (1989). Research in nursing. Menlo Park, CA: Addison-Wesley.
Stigma: A Health Barrier for Women With HIV/AIDS Rebecca L. Carr, PhD, RN, CS Lou F. Gramling, PhD, RN, CS
The stigma experienced by women with HIV/AIDS is much like that of Hester Prynne in The Scarlet Letter. At the time of diagnosis with HIV/AIDS, women already are aware of the stigma associated with the disease. They immediately see themselves differently and believe others do also. The purpose of this article is to explore the multidimensional effect of stigma on women’s efforts to promote, maintain, and enhance their health. The experiences of the women in this study tell of rejection by family members, friends, health care providers, employers, and church members. This rejection caused by stigma affects access to health care, medication adherence, social interaction, and social support. Interventions are needed to decrease the impact of stigma on women with HIV/ AIDS so they can achieve a higher level of wellness, increase their life span, continue in the workforce, and improve their quality of life. Key words: HIV/AIDS, women, stigma, health barrier, disclosure
In Hawthorne’s (1850) novel, The Scarlet Letter: A Romance, Hester Prynne was found guilty of adultery, forced to wear a scarlet A on her bodice front, and relegated to a place in society deemed appropriate for someone who had committed such a grievous sin against God and society. Her passions and illicit behavior made her unfit and unclean in society’s eyes. Although Hawthorne’s novel was set in the 1600s, the treatment that women with HIV/AIDS receive today is disturbingly similar to Hester’s.
The purpose of this ethnographic study was to determine the beliefs and behaviors European American women use to maintain, improve, or enhance their health after being diagnosed with HIV/AIDS. Questions pertaining to these topics were asked. In the course of data analysis, the researcher uncovered the encompassing effects of stigma on women diagnosed with HIV/AIDS. Prior to diagnosis, the women were aware of the existence of HIV/AIDS but believed they were safe from contracting the virus. This unfamiliar disease happened to “others.” When the women became one of the others, they braced themselves for the stigma-related rejection. The fear of stigma was so overwhelming that on diagnosis, the women were not concerned with the possible physiologic changes or death but rather the psychosocial ramifications that accompany this disease. This fear became a barrier to women achieving the goals necessary for them to maintain and enhance their health. According to the Centers for Disease Control and Prevention (2002), the number of women with HIV/ AIDS continues to increase. Women with HIV/AIDS are not rare but hidden. The authors’ experiences indicate that most people cannot name one woman they know who has HIV/AIDS. On the other hand, when questioned, most individuals can think of one or more males who have HIV/AIDS. As the number of women with HIV/AIDS continues to grow, why are people not more cognizant of this fact? Why are they not more Rebecca L. Carr, PhD, RN, CS, is an assistant professor in the School of Nursing at Clemson University. Lou F. Gramling, PhD, RN, CS, is a professor in the School of Nursing at University of South Carolina–Aiken.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 15, No. 5, September/October 2004, 30-39 DOI: 10.1177/1055329003261981 Copyright © 2004 Association of Nurses in AIDS Care
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aware of the women who suffer from this disease? The women in this study repeatedly talked of the stigma associated with this disease and their attempts to lessen the impact by controlling the number of people who were aware of their diagnosis. Perhaps that is the answer to why no one knows that the mother, sister, or daughter living next door has HIV/AIDS. Women with HIV/AIDS do not want to become the Hester Prynnes of today. According to Goffman (1963), stigma is an attribute that reduces a person in the minds of others “from a whole and usual person to a tainted, discounted one” (p. 3). Such things as physical abnormalities, character blemishes, and racial or religious affiliations can stigmatize a person. Stigma is deeply discrediting and signifies blemishes of individual character perceived as weak will, domineering or unnatural passions, treacherous and rigid beliefs, and dishonesty. Stigmatized individuals possess a characteristic that labels them as different in a negative way. Society exercises a variety of discriminatory tactics against people they stigmatize. In women with HIV/AIDS, both the terminal nature of the disease and the societal implications of sexual deviancy result in the stigmatization that they confront when others discover their diagnosis. Since HIV/AIDS was first detected in the United States, people with the disease have been subjected to stigma (Herek, 1999). Stigma associated with HIV/ AIDS has been demonstrated to have a negative impact on social interaction, employment opportunities, emotional well-being, and self-personification (Fife & Wright, 2000). Such suggested punitive measures against people with HIV/AIDS have included quarantine, universal mandatory testing, and tattooing (Herek, 1999). When the first cases were diagnosed in gay men, they were labeled as promiscuous and deserving of the disease because of their “unnatural” lifestyles (Shilts, 1988). As drug abusers were infected, they too were enveloped in the stigma. After all, people reasoned, had the individuals not used drugs they would not be infected. The early cases reported in women were attributed to their being prostitutes or drug abusers and the source of HIV/AIDS in servicemen (Burkett, 1995; Shilts, 1988). The difficulty of female-to-male transmission was ignored. The stigma of HIV/AIDS is linked to everyone who is diagnosed regardless of their age, innocence, morality, gender, or race.
This article focuses on the health barriers associated with stigma as women seek to promote, maintain, and enhance their health and well-being after being diagnosed with HIV/AIDS.
Method An ethnographic methodology with repeated interviews and observation participation was used to gather data. A purposive sample of 9 European American women with HIV/AIDS was recruited using volunteer and networking sampling techniques. The sample was limited to European American women because health beliefs and practices vary between cultures (Leininger, 2002), and ignoring these differences results in cultural blindness (Clark, 1984) and complicates data interpretation (Morse, 1995). In-depth interviews regarding the participants’health-promoting lifestyles and observation-participation (Wilson, 1989) were conducted during a 2-year period (1995 to 1997) to collect data. One participant was interviewed once, 3 participants were interviewed twice, and 5 were interviewed three times for a total of 22 interviews. Audiotaped interviews took place in a variety of places chosen by the participants. Many times the researcher was invited to the participants’ homes, enabling the researcher to meet family members and friends. Four participants contacted the researcher regularly throughout the study to provide updates regarding health changes and other important life events. These encounters, in addition to seeing the participants at conferences and volunteer organizational meetings, provided the researcher with observationparticipation data. Data analysis was concurrent with data collection, and participants were consulted to discuss, expand, and confirm findings. Human assurance was procured from the appropriate agencies, and informed consent was obtained prior to enrollment in the study. All data were kept in a locked safe and any identifying information was removed to prevent breaching the confidentiality of the participants. Sample Characteristics The 9 women in the study ranged in age from 27 to 52 with a mean age of 37 years. The women were married, divorced, widowed, and single; 1 participant was
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a lesbian. Two participants had adult children and 2 had children younger than the age of 10. Four participants were employed full-time and 1 part-time; the remainder were unemployed or on disability. Seven participants contracted HIV/AIDS through heterosexual contact, 1 as a result of a sexual assault, and another via a blood transfusion, and 5 of the women had been diagnosed with AIDS.
Stigma Leads to the Redefinition Stigma associated with HIV/AIDS has multidimensional effects on women’s health and well-being. The stigma was so overwhelming for the women in this study that after diagnosis, they never perceived themselves in the same way. They may have been mothers, sisters, wives, teachers, secretaries, or designers prior to diagnosis, but afterwards they were simply women with HIV/AIDS. The diagnosis overshadowed everything they had been, everything they had accomplished, and totally redefined who they were. Past successes were negated by the diagnosis, whereas failures were maximized. One young woman, Sonya (all names used are pseudonyms), stated this effect of the diagnosis very clearly when she said, When I look in the mirror, I no longer see Sonya. I see a woman with HIV disease. It is the first thing I think about when I wake up in the morning and the last when I go to sleep at night. Diane further confirmed this with her statement: I try so hard just to go on about my business, do what I got to do and just don’t think about it, but it’s always there. It’s always in my mind and the harder I try it seems to be a little bit stronger than I am. These participants believed that everyone that knew of the diagnosis possessed the same feelings. Women blamed themselves because they had preconceived stereotypes regarding HIV/AIDS, believing that the disease occurred only in the promiscuous, immoral, or drug-abusing female. None of the women in this study considered themselves at risk for HIV/ AIDS. They acknowledged that to contract the virus,
all one had to do was have a single sexual encounter with an infected individual, but then they would quickly reassure the researcher of their cleanliness and high moral standards. One of the older participants reported, “There’s no one cleaner than me.” Another, when recounting her experience with reporting her sexual contacts to the health department, as is the law in her state, said, “You know I had to give names. I was never promiscuous. It was two guys out of all these years.”
The Many Faces of Stigma At the time of diagnosis, the participants were already aware of the stigma associated with HIV/ AIDS. They personally faced the harsh reality almost immediately on diagnosis. Physicians who told them of their HIV-positive status warned them to tell no one because they would be shunned and rejected. As one young woman related about her diagnosing physician, The first words out of his mouth after he told me it’s the worst were, “Keep your mouth shut. Find you a good doctor and keep your mouth shut.” She had a 2-hour trip home and remembers very little about the drive. All the women found this rejection to be prevalent as they told family and friends, employers and coworkers, health care providers, and church members. The fear was so great they had dreams about people discovering their diagnosis and throwing rocks at them or sending them to a faraway island. As one young woman put it, It’s hard ’cause you’ll be wanting to tell somebody but you say no, you can’t let them know ’cause what will they think? The following descriptions relate the women’s experiences with stigma as they navigated through life after their diagnosis with HIV/AIDS. With each disclosure, they were reminded of the stigma of HIV/AIDS. Revealing to Family and Friends The first persons told of the HIV/AIDS diagnosis were close family members or friends. Sometimes
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family members were supportive, but often this was not the case. The participants were devastated by their negative reactions. Some family members reacted with anger and disgust for years after the diagnosis. One participant described the constant rejection in this way: I try so hard to be close with my family, but they sure make it hard. I try to understand how they feel about me. Some of the things my mother says about me being sick and stuff I think she could do without saying. It makes me feel worse. Another reported her mother screaming profanities at her and saying, “I knew he’d end up killing you but I didn’t think it would be like this.” This same young woman was asked by her brother to keep her diagnosis a secret to avoid embarrassing the family. On learning of the participants’ diagnosis, family members asked them not to attend family gettogethers because they did not want to eat food prepared by someone with HIV/AIDS. One woman learned of this when her sister-in-law called her, crying: I asked, “You talked to them about Christmas, didn’t you?” She said, “Yeah, they don’t want to eat your food.” This participant believed that she had been infected by her husband, the brother of the fearful relative. Family members were reluctant to allow their small children to visit their grandmothers, aunts, and cousins who had HIV/AIDS. One participant who told her daughter, but not her son-in-law, cried as she explained, He doesn’t know, and my daughter is afraid if he were to know he wouldn’t let the children visit. At times I don’t care if the whole world knows, but then I think about my grandkids. Parents were afraid casual contact would result in their children being infected. Friendships often suffered after the diagnosis was revealed. On learning of her diagnosis, one
participant’s best friend totally rejected her on hearing the news. I will never forget. In 5 seconds I went from best buddy to “you people.” She said, “You people have to realize how frightened we are,” and I said, “I am scared to death right now. I am shaking all over.” This friend had been her partner in “barhopping” for years. The participant was certain that was how she had contracted the virus. This made her friend’s rejection even more difficult to understand. After several years of trying, the friendship did not survive, and the participant no longer has contact with this person. Some stories of potential rejection had happy endings. One young woman told her closest and dearest friend, who was a nurse, and was immediately comforted by her. Unfortunately, the friend’s husband was so angry he forbade his wife to have the participant or the participant’s children in their home. The participant reported the friend’s reaction in this way: She told him that we’d been best friends longer than she’d been married to him, and that if he wasn’t going to educate himself and deal with it, that if he would, he’d know that there’s no way for me to give it to her or her kids unless we slept together. We’ve been best friends for 21 years and had not slept together yet, so she didn’t think it was going to happen, and for him to just wise up or he could leave; that she would make him leave before she put me out of her life. The husband did take steps to learn about HIV/AIDS, and at the time of this research study, was so comfortable with the participant he hugged her every time he saw her. Employers and Coworkers: To Tell or Not to Tell Whether to tell employers was a dilemma faced by all the women. The major concern of the participants was the impact it would have on their employers and
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coworkers. Some believed they should tell in the event they could no longer fulfill their employment obligations. Others who worked with dangerous equipment were fearful they would be injured on the job and a careless coworker would become infected from the participant’s blood. Some employers were very professional and offered ways for the women to avoid revealing their HIV status. One woman who worked with dangerous equipment told her employer she was going to tell her coworkers immediately if she was injured on the job. His instructions were, No. You tell them to put on gloves and wash everything down like they are suppose to do, and if they say anything, tell them you are protecting yourself from them. They might have hepatitis or maybe they didn’t wash their hands after they went to the bathroom. When informed of the diagnosis, some employers asked the women not to reveal their diagnosis to coworkers; others encouraged them to quit. One participant’s employer fired her when she disclosed her diagnosis. Another woman recounted her experience this way: My employer flipped out—totally flipped out. She just couldn’t handle it. When I told her [I was HIV-positive] she was on the other side of the table, and it was like I could feel her wanting to back up. She was so uncomfortable with me around, I quit. The participants who chose not to reveal their HIV/ AIDS reported increased stress from having to hide medications and explain the various side effects from the medications. One individual stated, My job was very stressful. I was in retail management. I had to hide my medicine, and you know AZT is toxic, and if I felt bad [expletive deleted], I still had to go to work, and nobody knew except one woman. She was wonderful. I avoided everyone else. Another quit her job and ended all contact with her coworkers to avoid revealing her diagnosis. Multiple
rumors had surfaced, and she had difficulty continuing her work with the resulting tension. She said, People assume things without you even telling them. I wonder if it wouldn’t be better to tell them the truth to keep from all the other things they are gonna be thinking. Since she lived in a small town, she often saw her former coworkers who inquired about her health. She never disclosed her disease to them. Some women had coworkers who were supportive and helpful. They reported that their honesty made their lives less stressful and their workplaces more enjoyable. One young woman on disability was a volunteer at a health center. She chose to relinquish her disabled status to accept employment at the same agency and found the camaraderie with her coworkers a major source of emotional support. Stigma and Health Care Providers Despite expectations by the participants that people in the health care arena were more educated and would be more accepting of people with HIV/AIDS, the women found this not to be true. They also realized that acceptance by one provider at a site did not guarantee the same from others at the same site. Many health care providers reacted with disgust, disdain, and fear, with physicians often being the most vocal. One young woman asked her physician multiple questions when he gave her the diagnosis. In response to her questions, he said, “It doesn’t matter anyway. You’re gonna die.” She was devastated and sought health care from another physician. Another participant was referred to a gynecologist for an examination. She described her experience in this way: I had a pap smear and he said, “Well, if you’ve got HIV, this [the pap smear] should be the last thing you worry about. This would be the least of your worries.” And I was like “That’s something to say.” One young woman moved to a new area and was seeking a family physician to care for her when she had minor aches and pains not associated with HIV/
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AIDS. She related how she had explained her situation to the office manager and the reply she received: “Call me back tomorrow. We’ll have to discuss it. There are four doctors in our group.” And I called her back and she said, “We’ve all discussed it. There is nothing we can do for you. We can’t help you so there is no reason to risk our normal patients by taking you in.” Needless to say, the young woman was angry, sad, and disheartened about this rejection. One woman was refused treatment by a urologist, although he had radiological evidence of her kidney stone. He referred her to a large teaching hospital 2 hours away. Dentists also made it clear that they preferred that someone with HIV/AIDS seek treatment elsewhere. One participant alerted her dentist, and he questioned her regarding her symptomatology and cell counts. This is the exchange that followed: He said, “Well, that’ll be all right for right now, but when things start getting really bad for you, we’ll have to dump you.” I said, “No, you won’t. I just dumped you. I will not be back. I can promise you I am not the only HIV patient you have. I am just the only one who has told you.” One young woman revealed her HIV/AIDS status to the dental hygienist only to have her leave her side in the middle of the examination. The hygienist went one step further—she left the building and her job. The dentist had to complete the cleaning procedure. One participant summed up her frustration in this way: What have I got that these people are so frightened of? They are supposed to know how to deal with this. They are supposed to know I am not dying right this minute. Another aspect of stigma was the discrediting of all physical complaints by health care providers. Every rash, pain, or discomfort was attributed to HIV/AIDS. The health care providers did not recognize any complaint as anything but a clinical manifestation of HIV/ AIDS or its medications. One young woman ended up with a gallbladder so inflamed she required intravenous antibiotics for days prior to surgery. This same
individual developed an ulcer that was treated as a side effect of the antivirals for weeks before they made the correct diagnosis. The women in this study learned to be persistent, even aggressive, to ensure appropriate care when needed. Some had to change physicians to obtain adequate care. Churches: A Source of Support? For those participants who were active in a church, the greatest surprise was the reaction of the members and the ministers. Their ministers ignored them. When they were ill, the ministers did not bother to visit or call. Sonya, a very active church member, told this story: I had to address the issue of how the church was handling it because fear and ignorance were rampant at that point. It was the only way it was going to keep the wrong rumors from flying, because it was getting back to me that someone said I had AIDS and my baby was dying. I was like, please, if you’re going to tell it at least tell it right; if you’re going to talk about me, let’s get it right. I told them what the situation was, that they had nothing to worry about being around me or my children. It did get nasty about the nursery, and I ended up coming out of the nursery. There’s a lot of times I’ve left church thinking “I thought these were Christian friends.” At the time of her second interview, she revealed she eventually sought guidance from another church. In her new church, she never achieved the same high level of involvement. What could have been a loving and nurturing environment for the participants turned out to be a source of pain and rejection. Secrecy Is Stressful After obtaining the results of their HIV/AIDS status, the women in this study never saw themselves in the same way again. The enormity of the diagnosis and the resultant repercussions were overwhelming to the women. They had to deal not only with the threat of death, at times being advised incorrectly that it was imminent, but also, most important, with the stigma attached to this diagnosis. Though none knew of any
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other woman who had HIV/AIDS, all were aware of the negative beliefs surrounding this disease. These women knew they would be accused of promiscuity, sexual deviancy, and/or drug abuse. Although the idea of not telling anyone briefly entered their thoughts, it did not take hold. The women knew they had to tell someone and whom they told became the major decision at the time. The person they chose was someone they trusted to keep their secret and offer support. Beyond this initial episode of sharing, the women struggled with telling anyone else. Many chose not to tell other people. They attempted to hide the numerous pills, the pharmacological side effects, and the frequent doctors’appointments. However, this choice did not go without a psychological and physiological price of its own. As one woman put it, “The secret was killing me faster than the disease.” When Angela was asked about the effects of not telling, she replied, Keeping it secret is more stressful than telling. The stress will kill you. You try to keep it all balled up inside and not tell anybody, where if you tell somebody, then you have somebody to talk to, and sometimes that’s all you need is somebody to talk to. The women in this study found that although secrecy protected them from rejection and pain, it also led to isolation. They would make excuses to avoid seeing old friends, and making new friends was a daunting task. Angela believed she had no choice. She said, I didn’t want anybody to know. I didn’t want that label they put on everybody. I thought about my family and worried about how the public would respond to them. Patty echoed this reaction when she said, I avoided everyone. I didn’t want to go see my parents. You know I didn’t want to be with old friends. I cut myself off from a social life. I isolated myself so I wouldn’t have to tell. Fear of rejection and ostracism invaded not only every waking moment but also their dreams. Diane described her experiences this way,
I’ll dream about people throwing stuff at me— people that in real life are my friends; that I expect to like me. I also dream about people I used to work with. I’ll be dreaming that they found out, and wherever I went that they were, they’d be throwing things at me. Sonya’s dreams were hauntingly similar: I had nightmares that they rounded up all the HIV-positive people and put us in a concentration camp and kept us there until we all died so the rest of the world would not get contaminated by us. I still have them occasionally. The inner conflict caused by the fear of ostracism and rejection and the need to share their secret was a source of extreme stress for the women. They needed their family and friends, but they feared the stigma associated with HIV/AIDS would change the way their family and friends viewed them. After all, the women themselves no longer believed they were the same women they had been prior to diagnosis. The stigmatization associated with HIV/AIDS redefined the way the women saw themselves. Not sharing the diagnosis with others made the women feel dishonest, but sharing meant pain and rejection.
Honesty or Isolation? The stigmatization associated with HIV/AIDS has been referred to as a second epidemic because of the considerable impact it has on the lives of the individuals (Chesney & Smith, 1999). When women are diagnosed with HIV/AIDS, the psychosocial implications, rather than the physiological impact, become the focus. The women in this study immediately adopted the stigma (Goffman, 1963) they associated with having HIV/AIDS. In essence, they became what they feared. In adopting the stigma, they had to make decisions based on this new identity. Although research indicates that method of transmission affects the level of stigma, this was not true in this group of women (Herek & Capitanio, 1999). Those infected by their husbands or blood transfusions suffered as much stigma as those who contracted the virus from a sexual encounter with an unknown individual.
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Naturally, the first problem encountered was disclosing their HIV/AIDS status. When telling friends and family members, the participants had to deal with their loved ones’ irrational fears of transmission and moral judgments and the realization that these loved ones no longer viewed them in the same manner. This added further support to the beliefs of the women that they no longer were the same person. Not disclosing or selective disclosure leads to some level of isolation. Crandall and Coleman (1992) and VanDevanter, Thacker, Bass, and Arnold (1999) reported that lack of disclosure of HIV/AIDS status results in isolation, depression, anxiety, and alienation. The consequence of these could include not seeking health care, poor adherence to drug regimens, developing elaborate tales to cover HIV/AIDS-related illnesses, and loss of social support. Other studies reveal that the stigma from HIV/AIDS has a negative impact on social interaction, employment opportunities, psychological well-being, and self-perception (Link, Struening, Rahav, Phelan, & Nuttbrock, 1997; Miles, Burchinal, Holditch-Davis, Wasilewski, & Christian, 1997). These findings are indicative of the double-edged sword of disclosure.
Secrecy Becomes a Health Barrier The consequences of nondisclosure produce challenges related to the ability of women to promote, maintain, and maximize their health. The participants in this study were hesitant to tell anyone for fear of rejection. This was not limited to family members and friends but also included health care providers and employers. This hesitancy presented a barrier to their seeking health care and both formal and informal support. Taking medications and maintaining employment while not disclosing their HIV/AIDS status required they make choices regarding medication adherence. These challenges had the potential to limit their access to health care, social support, medications, and employment. Pender (1996) recognized that barriers in relation to health-promoting behaviors can be imagined or real and may result in avoidance of a certain action. Barriers are “the blocks, hurdles and personal costs of undertaking a given behavior” (Pender, 1996, p. 69). The women in this study believed the
personal costs of telling family, friends, health care providers, and employers often were greater than the sacrifices of not telling. According to the literature, although women are more likely to disclose their HIV/AIDS status to employers than men, they are still hesitant to tell and often do not (Fesko, 2001). Some choose to quit their jobs rather than tell, and some tell only when it is necessary to adjust work demands to accommodate their health status (Caufield, Carey, & Mason, 1994; Fesko, 2001). The women in this study reacted in the same way. They resigned from well-paying jobs to keep from sharing their secret, or they watched their jobs taken away after disclosing their HIV/AIDS status to their employers. Fife and Wright (2000) reported on the problems associated with stigma and health care for women with HIV/AIDS. Women with HIV/AIDS are hesitant to access health care for fear of discovery. They are reluctant to take medications that identify them as being ill and require explanations. They feel compelled to tell the health care professional but worry that their confidentiality will be breached or the provider will reject or ridicule them. These reactions compromise their health care and negatively affect their lives. The women in this study experienced mixed reactions from their religious leaders. Despite research reports that religious beliefs and religious affiliations have a positive impact on quality of life, women use caution in revealing their serostatus to religious organizations because they fear condemnation (Fife & Wright, 2000; Flannelly & Inouye, 2001; Gilmore & Somerville, 1994). This deprives them of social support that has been readily available much of their lives and would now be helpful in dealing with this illness. If the women choose to keep their serostatus secret, they must avoid any situation in which they may have to reveal their diagnosis. This leads to a self-imposed isolation. According to the women in this study and other studies, the most serious impact of nondisclosure is isolation (Crandall & Coleman, 1992; VanDevanter et al., 1999). They believe this isolation is necessary if they choose to be less than honest with their family and friends, coworkers, health care professionals, and church members. The women believe by keeping their secret, they are denying others who they are. If they make the decision to reveal to everyone, they face ridicule, rejection, and pain.
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Surrey (1991) found in her research on women’s development that women grow through relationships. For women to have relationships that are meaningful to them, they must be honest. One participant acknowledged this when she said, “The closer you get to people, the more you reveal about yourself.” This isolation denied them the ability to grow through relationships and share an important aspect of their lives. One woman was honest when she stated, “I did not tell my family for years. It was real difficult. It hurt a lot. I have to believe that.” The self-imposed isolation kept the women from obtaining the love and support they so desperately needed while they dealt with the ever changing physiological and psychosocial problems associated with HIV/AIDS. Whether the women chose to keep their secret or share their HIV/AIDS status with others, the decision resulted in increased stress. This stress was detrimental to the health and well-being of the women. Their health was already compromised by a hampered immune system and reluctance to seek health care from providers who considered them promiscuous and immoral. Holt et al. (1998) found that those who do not disclose immediately will eventually do so in an attempt to regain control of their lives and alleviate the stress associated with the secrecy. These findings were supported in this research study.
Nursing Implications The results of this study and the literature recognize that the stigma of HIV/AIDS is a phenomenon that has a negative affect on many aspects of women’s lives. The participants altered their self-perceptions (perceptions of self) on diagnosis of HIV/AIDS secondary to stigma. They spent endless hours and untold amounts of energy guarding their secret to avoid condemnation, rejection, and pain. The women delayed seeking health care, they avoided their family members and friends, and they concocted elaborate tales to hide medications and symptomatology secondary to medications and the disease process. Fife and Wright (2000) found that the affects of stigma in HIV/AIDS were perceived by those infected as far greater than the severity of illness. The results of
this study underscored these findings. The women reported their greatest fear after learning their diagnosis was not of death but of the negative reactions of others. This apprehension continued and required they plan each personal interaction in the event they be required to reveal their serostatus. They were always ready for the rejection they were certain would occur. Nurses should develop interventions aimed at decreasing the stigma and secrecy associated with HIV/AIDS. There is a high level of anxiety associated with living every day knowing the secret may be revealed. More support groups for women with HIV/ AIDS where unique experiences could be shared would be helpful. Also, the inclusion of role-playing sessions to prepare them for instances when their serostatus is revealed and rejection is a possibility would provide anticipatory guidance and potentially decrease fear. Resources for women whose multiple responsibilities present challenges to accessing health care should be developed. Such obstacles as lack of child care and transportation are problematic without the added complication of stigmatization. Even when available, how do women with HIV/AIDS arrange transportation and explain to child care providers the reason for seeking health care without revealing their serostatus? Providing these two services while protecting their privacy would facilitate their receiving adequate health care. There are still many misconceptions about HIV/ AIDS. Providing educational programs for churches, corporations, and civic groups would raise knowledge levels, alleviate unrealistic fears, and diminish the level of stigma associated with HIV/AIDS. The development of strategies to decrease the adoption of stigma by women with HIV/AIDS would be helpful in increasing positive self-perception and minimizing self-deprecation (Fife & Wright, 2000). Recognition of the far-reaching effects of stigma is not enough to help women with HIV/AIDS adjust. Nurses, as their advocates, must take steps to diminish it. The suggestions outlined above would lessen the reluctance by the women to access health care, adhere to difficult medication regimens, seek social support, and disclose their HIV/AIDS status to others. These also would facilitate the adoption of healthy behaviors in a more timely fashion resulting in a higher level of
Carr, Gramling / Stigma: A Health Barrier 39
wellness, increased life span, retention in the workforce, and a better quality of life for the women and their families. Although much has been achieved in the past decade in the research arena pertaining to women with HIV/AIDS, there are still many unanswered questions. The rate of HIV/AIDS is increasing in those women who are already impoverished and disadvantaged (Karon, Fleming, Steketee, & De Cock, 2001). The social roles of women influence how they access the health care system, how they care for themselves (Gaskins, 2001), and ultimately how they adjust to the stigma of HIV/AIDS. The relationship between stigma in women with HIV/AIDS and access to health care needs to be explored.
References Burkett, E. (1995). The gravest show on earth: America in the age of AIDS. Boston: Houghton Mifflin. Caulfield, M., Carey, C. S., & Mason, C. Y. (1994). Project employ: Rehabilitation services facilitating employment of individuals with HIV/AIDS. American Rehabilitation, 20(3), 12-16. Centers for Disease Control and Prevention. (2002). Update: The AIDS epidemic in the United States, 2001. Morbidity & Mortality Weekly Report, 51, 592-595. Chesney, M. A., & Smith, A. W. (1999). Critical delays in HIV testing and care: The potential role of stigma. American Behavioral Scientist, 42, 1162-1174. Clark, M. (1984). Community nursing: Health care for today and tomorrow. Reston, VA: Reston Publishing. Crandall, C. S., & Coleman, R. (1992). AIDS-related stigmatization and the disruption of social relationships. Journal of Social and Personal Relationships, 9, 163-177. Fesko, S. L. (2001). Disclosure of HIV status in the workplace: Considerations and strategies. Health & Social Work, 26(4), 235-244. Fife, B. L., & Wright, E. R. (2000). The dimensionality of stigma: A comparison of its impact on the self of persons with HIV/ AIDS and cancer. Journal of Health and Social Behavior, 41, 50-67. Flannelly, L. T., & Inouye, J. (2001). Relationships of religion, health status, and socioeconomic status to the quality of life of individuals who are HIV positive. Issues in Mental Health Nursing, 22, 253-272.
Gaskins, S. W. (2001). Women and HIV: Across class, cultures, and countries. Journal of the Association of Nurses in AIDS Care, 12(4), 15-16. Gilmore, N., & Somerville, M. A. (1994). Stigmatization, scapegoating, and discrimination in sexually transmitted diseases: Overcoming “them” and “us.” Social Science and Medicine, 39, 1339-1358. Goffman, E. G. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon & Schuster. Hawthorne, N. (1850). The scarlet letter: A romance (2nd ed.). Boston: Ticknor, Reed, & Fields. Herek, G. M. (1999). AIDS and stigma. American Behavioral Scientist, 42(7), 1106-1116. Herek, G. M., & Capitanio, J. P. (1999). AIDS stigma and sexual prejudice. American Behavioral Scientist, 42(7), 1130-1145. Holt, R., Court, P., Vedhara, K., Nott, K. H., Holmes, J., & Snow, M. H. (1998). The role of disclosure in coping with HIV infection. AIDS Care, 10(1), 49-60. Karon, J. M., Fleming, P. L., Steketee, R. W., & De Cock, K. M. (2001). HIV in the United States at the turn of the century: An epidemic in transition. American Journal of Public Health, 91, 1060-1068. Leininger, M. M. (2000). Transcultural nursing and globalization of health care: Importance, focus, and historical aspects. In M. M. Leininger & M. R. McFarland (Eds.), Transcultural nursing: Concepts, theories, research, & practice (3rd ed., pp. 3-43). New York: McGraw-Hill. Link, B. G., Struening, E. L., Rahav, M., Phelan, J. C., & Nuttbrock, L. (1997). On stigma and its consequences: Evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse. Journal of Health and Social Behavior, 38, 177-190. Miles, M. S., Burchinal, P., Holditch-Davis, D., Wasilewski, Y., & Christian, B. (1997). Personal, family, and health-related correlates of depressive symptoms in mothers with HIV. Journal of Family Psychology, 11, 23-34. Morse, J. M. (1995). NIH and methodological melting pot. Qualitative Health Research, 5, 4-6. Pender, N. J. (1996). Health promotion in nursing practice. Stamford, CT: Appleton & Lange. Shilts, R. (1988). And the band played on: Politics, people, and the AIDS epidemic. New York: Penguin. Surrey, J. L. (1991). The “self-in-relation”: A theory of women’s development. In J. V. Jordan, A. G. Kaplan, J. B. Miller, I. P. Stiver, & J. P. Surrey (Eds.), Women’s growth in connection (pp. 51-66). New York: Guilford. VanDevanter, N., Thacker, A. S., Bass, G., & Arnold, M. (1999). Heterosexual couples confronting the challenge of HIV infection. AIDS Care, 10(1), 49-60. Wilson, H. S. (1989). Research in nursing. Menlo Park, CA: Addison-Wesley.