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The Lived Experience of AIDS-Related Multiple Losses by HIV-Negative Gay Men
JANAC Vol. Mallinson / AIDS-Related 10, No. 5, September/October Multiple Losses 1999
The Lived Experience of AIDS-Related Multiple Losses by HIV-Negative Gay Men R. Kevin Mallinson, MSN, RN, ACRN The gay male communities of the United States have experienced the most AIDS-related deaths over the longest period of time. The burden of grief for these men is unique and largely unaddressed in nursing research and practice. This phenomenological study explored the lived experiences of six HIV-negative gay men with AIDS-related multiple losses. The analysis of the interview data uncovered rich descriptions of the men’s lives as uninfected gay males in the midst of an ongoing epidemic. The two overall themes that emerged from the narratives were the meaning of multiple losses and the management of the losses. The effects of AIDS-related losses permeated the lives of these men, resulting in significant emotional, psychological, physical, and spiritual challenges. Concerns for health promotion and disease prevention, and implications for nursing practice, research, and education are offered. Key words: HIV negative, multiple loss, grief, HIV prevention, nursing I would say that AIDS has decimated a major part of my life. . . . I am sure that I have known hundreds of people who have died. Of people who were close enough to be in my address book . . . whole letters of the alphabet have been deleted. There are no more E’s. There are no more W’s. 42-year-old gay man (January, 1997)
Although AIDS is clearly not a disease that only affects Gay Men, it has created a health crisis for the gay communities of the United States. As recently as 1996, men from the gay and bisexual community have
accounted for over 50% of the annual reported AIDS cases among American citizens (Centers for Disease Control and Prevention, 1997), and they have suffered from a much higher percentage of cumulative deaths from the disease. Consequently, there are many gay male survivors who have suffered unprecedented levels of loss in their social networks. Reports of gay men who have experienced the loss of 50 or more friends, partners, and acquaintances to AIDS are not uncommon (Odets, 1995; Schwartzberg, 1996). For nearly two decades, these men have carried a disproportionate burden of the epidemic. With the gay male communities in large urban centers of the United States achieving estimated HIV seroprevalence rates of 20% to 50% (Curran et al., 1988), gay male survivors face an ongoing threat of experiencing more deaths, despite dramatic advances in antiretroviral therapies. Grief hurts, physically and emotionally. Numerous thanatologists (Bowlby, 1980; Kubler-Ross, 1969; Worden, 1991) have reported that the individual grieving a single uncomplicated loss may experience a wide spectrum of responses including sadness, a need to cry, disorientation, anger, anxiety, a loss of concentration, and physical discomfort. Despite the personal distress, such symptoms are to be anticipated and are considered normal; underscoring that grief is a normal healing process for accommodating loss, and it is not a pathologic condition (Arnold, 1996; Strawn, 1987). No two persons experience grief and bereavement in This study was supported in part by a graduate fellowship award from the Association of Nurses in AIDS Care (ANAC). I am grateful to my master’s thesis committee for their support and expertise; they are Patricia Grimm, PhD, RN; Linda Rose, PhD, RN; Arlene Butz, PhD, RN; Richard L. Sowell, PhD, RN, FAAN; and Richard Ferri, PhD, RN.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 10, No. 5, September/October 1999, 22-31 Copyright © 1999 Association of Nurses in AIDS Care
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exactly the same way despite similar religious or cultural backgrounds. As humans are dynamic, organic beings, a person’s responses to loss are highly contextual and may vary considerably with subsequent deaths (Worden, 1991). Gay men have frequently been victims of social ostracism (Sowell, Bramlett, Gueldner, Gritzmacher, & Martin, 1991), and they may be estranged from their biological family and community of origin. Consequently, many gay men form “families of choice” comprised of significant others not related by birth or marriage. Unfortunately, the mainstream view of family theory remains rooted in the nuclear (biological) family model (Cody, 1995). This limited definition of family may inadvertently cause nurses to overlook the need for targeted bereavement services for gay male survivors. For the bereaved gay man, hiding his grief may seem preferable to confronting the complex social controversies concerning morality, sexuality, contagion, and shame that is associated with losing a loved one to AIDS (Daugherty, 1993). Adding insult to injury, social shunning and ostracism may interfere with the healing process of bereavement (Schwartzberg, 1996). Complicated Bereavements The inability to resolve one’s grief can be devastating. Unresolved bereavement, also termed complicated mourning by Rando (1992), poses a significant risk for the development of adverse health outcomes ranging from emotional distress (e.g., depression) to somatic disorders (e.g., insomnia), and even death (e.g., by suicide). Kastenbaum (1969) coined the term bereavement overload to describe the potentially unhealthy response that individuals may have following a series of consecutive, and often overlapping, losses that result in an accumulation of unresolved bereavements. Under such extraordinary circumstances, an individual experiencing mounting losses may become emotionally overwhelmed, physically exhausted, and spiritually demoralized; these conditions were also identified by Rando (1992) as contributing factors to the development of complicated mourning.
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HIV-Negative Gay Men Understandably, much of the AIDS-related research has focused on the HIV seropositive client. The feelings, thoughts, and perceptions of the gay man who is affected, but uninfected, by HIV remain largely unexplored. Frequently, HIV-negative gay men are mentioned only in the context of being a lover or caregiver to a person with HIV/AIDS. In the sincere efforts to provide support to persons infected with HIV, the needs of the HIV-negative gay man have gone either unacknowledged (Schwartzberg, 1996) or invalidated, and the development of targeted services (e.g., support groups) has become extremely rare (Odets, 1995). A deeper understanding of the context in which HIVnegative gay men live their lives is crucial if effective bereavement and HIV prevention interventions are to be designed.
Scope of the Investigation The literature on complicated mourning has identified high-risk factors for unresolved bereavements that would categorize AIDS-related multiple losses as a serious threat to the health and well-being of affected individuals in general, and gay men in particular. Despite the ample evidence documenting the needs of the bereaved, nurse researchers have yet to explore indepth the experiences of seronegative gay men living with multiple losses from the HIV epidemic. Therefore, within a phenomenological framework, this investigation explored the lived experience of being an HIV-negative gay man who has experienced multiple losses of acquaintances, friends, and partners to AIDS.
Methods The investigator recruited a purposive sample of HIV-negative gay male participants through personal networks and advertisements in gay community centers. Criteria for eligibility were as follows: be over the age of 18; be proficient in spoken English; and have experienced at least five AIDS-related deaths of partners, friends, or social acquaintances. The criterion for the number of deaths experienced was arbitrarily
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chosen, as one cannot objectively quantify the concept of epidemic-related multiple losses. The Institutional Review Board of the Johns Hopkins Medical Institutions approved the informed-consent process and the procedures used to assure the confidentiality and protection of the participants before participant recruitment or data collection began. Prior to data collection, the investigator began a bracketing journal in which personal and professional assumptions and preconceptions about AIDS-related multiple losses were recorded in an honest attempt to preclude these prejudices from influencing the investigative process. Open-ended interviews were conducted with each participant. The investigator began by posing the following question: “Please tell me about your experience with AIDS-related multiple loss?” Interviews were audiotaped and transcribed verbatim by the investigator. Approximately 2 to 4 weeks after each interview, participants were contacted to provide an opportunity for additional comments and questions, or to discuss the effects of the interview experience on the participant. Analysis of the narrative data closely followed Colaizzi’s method as described by Moustakas (1994, p. 122). The investigator read through each transcript individually while listening to the audio recording to get a sense of the narrative as a whole. Subsequently, each text was examined and coded for words, phrases, or sentences that related to the experience of multiple losses. Statements were grouped into categories of like meaning. Overall themes emerged across individual transcripts, and they demonstrated how similar concepts or experiences were perceived differently by each participant. The trustworthiness of the interpretations and the auditability of the analysis process were evaluated by two nurse researchers with doctorate degrees, who have expertise in qualitative research methods and HIV/AIDS.
Results
referred to the investigator as potential participants, and both declined to participate for personal reasons. Five of the men lived in urban settings, and one resided in a rural community. One participant reported approximately 12 losses among his acquaintances, friends, and partners. Another reported dozens of deaths. However, four of the men estimated that their AIDS-related losses numbered more than 200 over the 15-year period of the HIV epidemic. Themes Common Across Narratives Although each of the participant interviews (represented by pseudonyms to protect the men’s privacy) provided a unique perspective on the experience of living with multiple losses, the themes that emerged across narratives elucidated the commonalities shared by these men. Ten categories of like meanings were identified and conceptualized into two overarching themes, the meaning of multiple losses and the management of the losses. Meaning of multiple losses. The first of the two themes that emerged across narratives described how experiencing repeated deaths resulted in more than just loss for these men. It imposed multiple losses. Initially, each of the men was able to recount the loss of friends, sharing painful moments in which it became abundantly clear that companions were no longer available (alive) for camaraderie. In numerous poignant vignettes, the grim day-to-day realities resulting from the loss of close friends were elucidated. Over the years of the AIDS epidemic, the deaths mounted. The repeated, and sometimes overlapping, loss of friends left the men feeling sad, angry, fearful, lonely, and empty. Words and phrases such as horrors; traumas; tragic; and confusion, frustration, and extreme sadness permeated the narratives. The increasing loss of friends translated to the decimation of one’s family of choice. This was a particularly salient issue for Peter, who lamented,
Sample In this study, six HIV-negative gay men who had experienced AIDS-related multiple losses provided a plethora of information. They all had some college education, were Caucasian, and ranged in age from 38 to 60 years old. Two African American gay men were
So much of the warmth and support I had is gone. . . . Like many [gay] people come to the cities and start lives of their own to get away from families who were not understanding and accepting. You know, these people have been family . . . friends can become so close that they have
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become, at least, if not more important than some of the blood relatives that you grew up with. . . . How do I overcome this sense of isolation I have come to feel? This is just so scary, very scary. After experiencing years of accumulating deaths within their social networks, the men began to perceive a loss of community. Disability and death shattered meaningful long-term relationships. The men described how vivid images and memories of their fallen comrades had become intrusive and omnipresent. Their neighborhoods were replete with ghostly reminders of happier times when the community celebrated its freedom and brotherhood; a time when the specter of funeral services was unimaginable. As the deaths escalated over the years, the epidemic began to take its toll on the men’s sense of identity. The loss of self was associated with their disintegrating family structures and social networks. Only 42 years old, Terry illustrated the erosive influence of the chronic uncertainty and mounting fatigue on his sense of self with the following: So, sometimes I wander around aimlessly. I am kind of lost because I know what I want to do when I get a life, but I depend upon . . . my social structure or group, the people around me to know what’s next in life . . . the horrors, the overwhelming anguish that is associated with so much loss in my life. . . . AIDS and loss have just worn me out. . . . I feel myself fading away, passing away. Acute grief is frequently characterized by a transient sense of isolation from others. Usually, this uncomfortable feeling fades with time as the survivor eventually reintegrates into the social events in the nongrieving community. However, the repeated and overlapping deaths experienced by these men gave little opportunity for healing. They described an increasing loss of connection with others that had become chronic and that diminished their capacity to reestablish contacts or initiate new friendships. Troubled by guilt and anxiety, they vacillated between making new friends and avoiding socialization for fear that they might become emotionally attached to men with HIV infection and risk further losses in the future.
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At the same time, these gay male survivors perceived little understanding of their tragedies from heterosexual friends, family, and coworkers. They expressed clearly how the way society shows disdain for gay relationships, shows a lack of compassion for their peers with AIDS, and directs blame at gay men for spreading AIDS, had added to their sense of isolation. The inability of others to understand the context of being HIV negative in the midst of an ongoing epidemic compounded the problem. In response to a friend’s comment that he should feel lucky for having dodged the bullet [tested HIV negative], Jacques recalls, I remember saying . . . “What makes you think that makes me lucky? Do you think I look forward to being left by myself without all of you?” I said that “a part of me wishes I would go, too. What kind of life am I going to have without all of you?” All of the men believed that most people who are not gay do not understand their distress and, worse yet, that many heterosexuals do not care about the deaths of gay men. Losing so many friends at a relatively early age resulted in a loss of the natural course of life. The men expressed feelings of sadness, surprise, and bitterness over the way life had panned out. I am resentful that I don’t have the people to grow old with, my friends . . . to sit on the front porch in rocking chairs. It’s not meant to be . . . it’s like I have been cheated out of growing old with friends. These men were unprepared for so much death so early in life. It not only changed the way things used to be, but permanently altered images of the way life was supposed to be. They had lost not only their past, but also their future. The future was viewed as dismal, with images of loneliness and the continual struggle to replenish the decimated friendships. Management of the losses. The second theme across narratives described the ongoing challenges inherent in managing AIDS-related multiple losses. The participants’ lived experiences were fraught with
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distressing internal conflicts as each man struggled with extraordinary emotional, ethical, and existential issues. As a result of the multiple losses, the men were confronted with decisions that required in-depth introspection, a frequent review of one’s personal beliefs and values, and an ongoing reevaluation of one’s role in life. Their feelings, thoughts, and behaviors were described as being in continual flux; uncertainty was an incessant companion. Investing time and energy into relationships with men who might die from AIDS had been a source of internal conflict for the men. Deciding whether to initiate new relationships or to withdraw from socializing characterized the first management strategy described by the participants: engaging versus self-protecting. Peter’s dilemma with dating exemplified his unsettled and conflicting thoughts and emotions. In one moment, he was discussing his need to protect himself. “I just didn’t date for a while. I just didn’t want to go through the loss of dating. . . . I just don’t want to invest a lot in somebody that’s gonna die.” Moments later, he reframed his perspective, seemingly contradicting his earlier comments. There were certainly people to date, but they were all positive. . . . I wouldn’t let that stand in the way of being with somebody now. I think I would rather love somebody for a few years than not have somebody. . . . I think I’ve distanced myself enough. . . . If I met somebody now, I would encourage a relationship. On one hand, these men wanted to believe that they would welcome anyone into their life without regard to HIV serostatus. On the other hand, they felt a need to protect themselves from further loss, heartbreak, and depression. This internal conflict pitted the desire for warmth, socialization, love, and intimacy against the need for self-protection from the pain of further grief. It challenged the participants’deeply held personal beliefs and values, which led to ongoing introspection and reevaluation. I don’t necessarily socialize . . . with HIVpositive people only because my heart says, “Don’t do this to me.” After this many years, I still feel HIV-positive people and people with
AIDS reaching out to me . . . wanting my person and their friendship . . . it’s a difficult thing for me to do, I am not ready to go down that path again. . . . I have wavered about that decision because I am generally very open, accepting person. . . . My basic person tells me that it really doesn’t matter. My soul says that it doesn’t matter. . . . But, there’s a prudent, practical side of me . . . in an effort to take care of myself, I need to set that limit. . . . I have to be more practical, because this last loss has just almost debilitated me. It has almost just made me not be able to get out of bed, not go to work. The theme of internal conflict ran throughout the narratives. The men struggled with being discriminatory [by HIV serostatus] in their socialization behaviors and often chose more passive courses of action. For example, several men stated that staying home (i.e., isolating) allowed them to avoid the inherent conflicts. For all of the participants, the fear of engaging and the need to protect oneself contributed to a growing sense of isolation. The narratives revealed a second dichotomous management strategy, adapting versus escaping. In an attempt to manage the ubiquitous nature of the losses, they wavered between adapting their feelings, thoughts, and behaviors to the challenges at hand and finding a means of escape from the situation. For Peter, volunteering for this study meant recollecting painful memories of the AIDS epidemic and revisiting his grief. He described his conflicting emotions at the opening of his interview. Interviewer: Tell me, what is your experience with multiple losses from AIDS? Peter: It’s been pretty severe. I was dreading this tonight actually. It started this afternoon. I started getting that old anxiety that I got in the mid-80s, and I just didn’t want to kind of open it. . . . I want to do this, but I don’t, you know? . . . I am trying to blot it out of my mind, not blot it out of my mind, I can’t. Despite the rising anxiety, Peter was intrigued with proceeding with the interview. As with the other participants, Peter began recalling friends with sadness and, at times, with heart-warming vignettes. This time,
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he chose to reminisce and confront the grief. Adapting to the mounting AIDS crisis, many of these men volunteered for AIDS organizations, assisted friends with managing their medications and treatments, and openly battled the societal stigma and discrimination they encountered. In contrast, there were times when confronting the daily realities of AIDS became so overwhelming—the sadness, fatigue, and anxiety so debilitating—that escape seemed prudent. Escape strategies included overworking, physically moving to a new location, avoiding gay newspapers (i.e., obituaries), and frequent vacationing in remote areas. Sadly, for some, escaping meant entertaining thoughts of suicide. In the following, Chuck describes how hopelessness had affected his outlook: I told him that I was going to . . . go ahead and kill myself. . . . Because there were a lot of times I did want to kill myself. I didn’t want to be around. Why bother living? It’s so hard. It hurts so much. Everybody is gone, and I miss them so much I want to be with them. . . . I don’t completely trust myself around it [suicide] . . . it’s a scary thing to think about, but I still do think of it as a viable alternative. Although most of the men contemplated not caring for someone with AIDS or not volunteering in AIDSrelated activities as a means of escape, they admitted that it was more easily said than done. Their deeply held values and beliefs—their sense of duty and compassion—deemed personal inaction to be an unacceptable choice. In the face of ongoing adversity, these men were continually confronted with images of debilitation and death. Not surprisingly, such traumas led to the emotional numbing and normalizing death. The men spoke of being “shell-shocked” by the onslaught of deaths. As a protective response, these men become emotionally numb to the decimation that they were witnessing. This blunting of one’s feelings influenced their ability to experience joy or happiness. One man described life as “gray.” Another expressed his resignation to the reality of epidemic loss and how it had become integrated into his life with the following:
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this is kind of horrible to say, but I think that it [death] has just become normal . . . a part of who I . . . it’s just like a fabric of my life. For these men, death was not a distant and abstract concept. Death was palpable; it was an omnipresent companion. In fact, four of these HIV-negative men expressed little or no fear of acquiring HIV infection. Epidemic losses had diminished the ability—eroded the willingness—to be ever vigilant about safer sex. Sounding fatigued, Terry spoke with a tone of resignation: I think fear was the big motivator to not become exposed to HIV for many years and I can’t, have not, sustained that level of fear, and so it requires a certain amount of vigilance on my part to not do those things that put me at risk for HIV. . . . I used to think that the worst thing there was would be to die of AIDS, and you know what? I don’t think so anymore. Dying of AIDS doesn’t scare me at all. Fellow participants echoed Terry’s changing perceptions about death (and the fear associated with it) as they discussed experiences with assisted suicide. With a strikingly unemotional tone, the participants described how the deaths of friends and partners with AIDS had been planned when the quality of life had ceased to be acceptable. For these men, there was little conflict over one’s right to self-deliverance after a long-term battle with opportunistic infections and HIV-related symptoms. In apparent contrast to their feelings of resignation, the men managed their grief by validating the losses. To honor the deceased, the participants created panels for the NAMES Project AIDS quilt, kept mementos and keepsakes, collected obituaries, and maintained a list of names of those who had died. One participant ritualistically recorded the names of friends diagnosed with AIDS. Following the friend’s death, he would draw a single thin line through the name. He retrieved this list during the study interview and, while skimming over the more than 200 names before him, softened his voice to relay brief vignettes about selected individuals on the list. When asked what significance such a list could have, Peter responded, “I am just
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overwhelmed at the names. But, you know, it also brings back [crying] . . . such wonderful memories, good memories, good . . . good memories.” Similar efforts to validate the losses included maintaining contact with surviving families and friends, making memorial donations, and performing rituals associated with the deceased. Decrying societal homophobia and AIDS phobia, one participant explained that actions to validate the deaths of his friends might serve to validate their lives as well. A final common thread among the narratives was finding hope in the midst of the AIDS epidemic. Despite the overwhelming tragedies in their lives, these men expressed hope for a day of more joy and less grief. Some spoke of the benefits they had gleaned from their experiences. These bittersweet returns included discovering greater self-reliance, forming relationships with families and friends of the deceased, and building an increased appreciation for the important things in life. For some, spiritual beliefs were the foundation of hope. For others, it was the challenge to survive in spite of the adversity. For one participant, the epidemic had actually “put a face on gay men” and provided “middle-America with a more realistic image” of homosexuals. Despite all of the benefits recounted by the participants, each of the men was quick to state that the benefits were not worth the price that had been paid.
Discussion The lived experience of being an HIV-negative gay man with AIDS-related multiple losses is complex and multifaceted. The mounting deaths of loved ones and the decimation of social networks produced cumulative effects that permeated the lives of these participants. The epidemic had greatly affected the men’s ability to form and maintain relationships. Images of the future had been adversely altered. Frequently referred to as the worried well, the HIV-negative gay men in this study were certainly more than worried and, by their own report, not doing particularly well. The internal conflicts described by the participants in this study—adapting versus escaping and engaging versus self-protecting—are not dissimilar from the struggles of “functional and dysfunctional
engagement and detachment” described by Carmack (1992) in a study of 19 gay individuals coping with multiple losses from AIDS. Carmack asserted that gay persons grapple with their own personal level of involvement with gay men with HIV (or at risk for HIV). This struggle with their personal values balances the desire to treat the infected men honestly and equitably while protecting themselves from further pain from anticipated losses. McGaffic and Longman (1993) uncovered a similar theme in the connecting and disconnecting behaviors in their study of gay widowers. The results of this investigation support the assertions that AIDS-related multiple losses can be personally overwhelming, can place individuals at risk for bereavement overload (Strawn, 1987), and may result in a multiple loss syndrome (Klein, 1994). The data support previous findings that mourning a death from AIDS may be complicated by stigma, lack of social support (Biller & Rice, 1990; Worden, 1991), lack of social sanction, lack of support from their gay relationships and gay family (Cody, 1995; Sowell et al., 1991), lack of understanding among heterosexuals concerning AIDS-related losses (McGaffic & Longman, 1993), and social ostracism from religious institutions and health care professionals (Williams & Stafford, 1991). The degree of emotional numbness and normalization of death detected in these men was extraordinary. Many of the participants characterized their numbness as an unhealthy, undesired, and dysfunctional response. Persons affected by AIDS-related multiple losses may demonstrate emotional dampening (Neugebauer et al., 1992) and demoralization (Schochet, 1991). It is disturbing that the normalization of death seems inextricably connected to the fear of HIV infection and a willingness to maintain safer sexual behaviors. Likewise, the nonchalance with which the men discussed assisted suicide is of concern. Having noted the lack of support from others for their grief, it seems unlikely that these men would talk about controversial AIDS-related issues (e.g., assisting someone to take his or her own life) contributing to their internal emotional and ethical conflicts. Professionals unaware of the impact of AIDSrelated multiple losses may arrive at erroneous
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conclusions about the intentions of uninfected survivors. For example, although the men in this study admitted to avoiding intimate relationships with HIVpositive partners, their intent was reportedly to protect themselves from further episodes of loss. One may have superficially assumed that the men were concerned with becoming HIV infected. On the contrary, survivors with more than 200 losses, which were the majority of participants in this study, reported little or no fear of acquiring HIV infection. For these men, death had become more familiar and less fearful. A phenomenological approach was appropriate for this investigation, because there have been few studies of AIDS-related multiple losses. Interviews with a purposive sample of individuals who have had significant experience with AIDS-related multiple losses uncovered valuable insights into an unprecedented phenomenon. These findings are limited, however, by the nature of the sample. The experiences of these well-educated, White gay men may not be representative of other communities that are being disproportionately affected by the AIDS epidemic. Younger gay men, persons who are not gay, and women were not represented in this study. One of the unique aspects of this study was that it explored the perceptions of HIV-negative gay men who were affected, but uninfected. One of the participants described how disclosing his HIV status as negative had resulted in resentment from others because of his lack of infection. It seems clear that uninfected gay men suffering the effects of multiple losses may not feel comfortable seeking the support—may not feel deserving of the support—and assistance that they need, resulting in greater alienation and isolation. The participants in this study described the overwhelming nature of AIDS-related losses and the deleterious effects on their sexuality, self-esteem, and ability to socially engage. The HIV epidemic affects the physical, emotional, and spiritual health and well-being of the survivors, whether they are infected or not.
Implications for Practice, Research, and Education In this study, AIDS-related multiple losses have been shown to be overwhelming, stressful, and
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potentially damaging to one’s well-being. The grieving process may be facilitated by nurses who ask clients about their loss experiences, listen to their stories, and make mental health referrals when appropriate (Mallinson, 1999). Nurses can promote optimal outcomes by establishing a clinical environment in which they are able to provide privacy, are available to the griever, and can engage the griever with empathy and compassion. By removing the shame, blame, and stigma from AIDS-related losses and providing a safe atmosphere in which to discuss grief and loss, practitioners may facilitate healing while fostering open and trusting nurse-client relationships. The findings of this study support Schwartzberg’s (1992) conclusion that current theoretical models of grief are not adequate for conceptualizing the multidimensional and multifaceted aspects of multiple losses and bereavement overload. Theory development—be it grief and bereavement, stress and coping, or prevention theory—must consider the fact that epidemic losses often occur over an extended period. The AIDS-related losses have been chronic and, often, overlapping. Notably, the number of research studies focused on AIDS-related multiple losses seemed to have paralleled the number of AIDS-related deaths, both of which peaked in the early 1990s (Carmack, 1992; Daugherty, 1993; Klein, 1994; McGaffic & Longman, 1993; Neugebauer et al., 1992; Viney, Henry, Walker, & Crooks, 1992) and diminished quickly thereafter. Nurses cannot afford to assume that just because the current AIDS mortality rate has abated that the many losses over the last 20 years have ceased to have adverse effects on the survivors. It is conceivable that other populations with high HIV seroprevalence rates (e.g., injection drug users) are currently experiencing similar tragedies. How are the effects of AIDS-related multiple losses influenced by racism, socioeconomic status, or other variables that characterize the marginalization of communities? Nurse researchers are encouraged to explore the multiple loss experiences across various client populations with HIV to identify patterns of response, effective interventions, and relevant health outcomes. This study offers several implications for HIV prevention efforts. First, the participants reported that increasing exposure to unprecedented levels of death
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served to diminish their fear of acquiring HIV infection. Prevention programs are urged to assess the impact of multiple losses on the willingness of persons to maintain safer sexual behaviors rather than assume that the fear of HIV is universal and unremitting. The valid assumptions of the early 1980s (e.g., everyone is fearful of acquiring HIV infection) must be continually reassessed and challenged throughout the course of the epidemic. Having support groups that integrate personal discussions of grief and loss among one’s social network can provide the validation, socialization, and support needed by many gay men. Secondly, the impact of homophobia must be examined for its role in demoralizing the uninfected survivors and increasing the risk for unsafe sexual behaviors (Grossman, 1991). Homophobia underscores and augments the disenfranchisement of AIDS-related grief experienced by many gay survivors (Mallinson, 1999). Nurses are challenged to confront their personal stereotypes and misconceptions about gay men and persons with AIDS. Clinicians are urged to elicit suggestions from their clients on how to improve access to health promotion and disease preventive services— how to establish a welcoming clinical environment— for persons in sexual minority communities (i.e., gay, lesbian, bisexual, and transgendered persons). Finally, holistic HIV prevention programs must consider that behavior change that occurs within the context of a client’s life. Therefore, nursing’s definition of family must be culturally appropriate. The participants’ perception that multiple loss experiences were not being understood by others parallels the conclusions from other studies (Cody, 1995; McGaffic & Longman, 1993; Sowell et al., 1991), in which health care professionals did not comprehend the nature, diversity, and depth of gay relationships and the importance of the gay family to gay persons. Providing for an interactive dialogue will not only improve nurse-client rapport, but may allow information to flow in both directions. Nurses that address AIDS-related grief have the opportunity to affect their client’s health outcomes. Not providing the appropriate care for survivors of AIDS-related multiple losses may abandon those at highest risk for unhealthy outcomes (e.g., becoming HIV infected) to fend for themselves. Providing culturally appropriate care, on the other hand, may
require that nurses search their hearts, identify personal prejudices, develop new insights, and address the issues and concerns of the communities with which they may be uncomfortable or unfamiliar. It is in that search that we will find the hope and humanity that so characterizes nursing’s role in the world.
References Arnold, J. (1996). Rethinking grief: Nursing implications for health promotion. Home Healthcare Nurse, 14, 777-783. Biller, R., & Rice, S. (1990). Experiencing multiple losses of persons with AIDS: Grief and bereavement issues. Health and Social Work, 15, 285-290. Bowlby, J. (1980). Attachment and loss: Volumes I-III. New York, NY: Penguin Books. Carmack, B. J. (1992). Balancing engagement/detachment in AIDS-related multiple losses. IMAGE: Journal of Nursing Scholarship, 24, 9-14. Centers for Disease Control and Prevention. (1997). HIV/AIDS surveillance report. HIV/AIDS Surveillance Report, 9, 1-39. Cody, W. K. (1995). The lived experience of grieving for families living with AIDS. In R. R. Parse (Ed.), Illuminations: The human becoming theory in practice and research (pp. 197242). New York: National League for Nursing Press. Curran, J. W., Jaffe, H. W., Hardy, A. M., Morgan, W. M., Selik, R. M., & Dondero, T. J. (1988). Epidemiology of HIV infection and AIDS in the United States. Science, 239, 610-614. Daugherty, S. J. (1993). It’s never over: Addressing AIDS bereavement. CARING, 5, 42-46. Grossman, A. H. (1991). Gay men and HIV/AIDS: Understanding the double stigma. Journal of the Association of Nurses in AIDS Care, 2, 28-32. Kastenbaum, R. (1969). Death and bereavement. Springfield, IL: Charles C. Thomas. Klein, S. J. (1994). AIDS-related multiple loss syndrome. Illness, Crisis, & Loss, 4, 13-25. Kubler-Ross, E. (1969). On death and dying. New York: Macmillan. Mallinson, R. K. (1999). Grief work of HIV positive persons and their survivors. Nursing Clinics of North America, 34, 163-177. McGaffic, C. M., & Longman, A. J. (1993). Connecting and disconnecting: Bereavement experiences of six gay men. Journal of the Association of Nurses in AIDS Care, 4, 49-57. Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks, CA.: Sage. Neugebauer, R., Rabkin, J. G., Williams, J.B.W., Remien, R. H., Goetz, R., & Gorman, J. M. (1992). Bereavement reactions among homosexual men experiencing multiple losses in the AIDS epidemic. American Journal of Psychiatry, 149, 1374-1378. Odets, W. (1995). HIV-negative: How the uninfected are affected by AIDS. New York: Plenum.
Mallinson / AIDS-Related Multiple Losses Rando, T. A. (1992). The increasing prevalence of complicated mourning: The onslaught is just beginning. OMEGA, 26, 43-59. Schochet, R. (1991). Psychological correlates of distress in HIVnegative gay men in San Francisco. Dissertation Abstracts International, 51, 4607B-4608B. Schwartzberg, S. S. (1992). AIDS-related bereavement among gay men: The inadequacy of current theories of grief. Psychotherapy, 29, 422-429. Schwartzberg, S. S. (1996). The crisis in meaning: How gay men are making sense of AIDS. New York: Oxford University Press. Sowell, R., Bramlett, M. H., Gueldner, S. H., Gritzmacher, D., & Martin, G. (1991). The lived experience of survival and
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bereavement following the death of a lover from AIDS. IMAGE, 23, 89-94. Strawn, J. M. (1987). The psychosocial consequences of AIDS. In J. D. Durham & F. L. Cohen (Eds.), The person with AIDS: Nursing perspectives (pp. 126-149). New York: Springer. Viney, L. L., Henry, R. M., Walker, B. M., & Crooks, L. (1992). The psychosocial impact of multiple deaths from AIDS. OMEGA, 24, 151-163. Williams, R. J., & Stafford, W. B. (1991). Silent casualties: Partners, families, and spouses of persons with AIDS. Journal of Counseling and Development, 69, 423-427. Worden, J. W. (1991). Grief counseling and grief therapy: Handbook for the mental health practitioner. New York: Springer.
The Lived Experience of AIDS-Related Multiple Losses by HIV-Negative Gay Men R. Kevin Mallinson, MSN, RN, ACRN The gay male communities of the United States have experienced the most AIDS-related deaths over the longest period of time. The burden of grief for these men is unique and largely unaddressed in nursing research and practice. This phenomenological study explored the lived experiences of six HIV-negative gay men with AIDS-related multiple losses. The analysis of the interview data uncovered rich descriptions of the men’s lives as uninfected gay males in the midst of an ongoing epidemic. The two overall themes that emerged from the narratives were the meaning of multiple losses and the management of the losses. The effects of AIDS-related losses permeated the lives of these men, resulting in significant emotional, psychological, physical, and spiritual challenges. Concerns for health promotion and disease prevention, and implications for nursing practice, research, and education are offered. Key words: HIV negative, multiple loss, grief, HIV prevention, nursing I would say that AIDS has decimated a major part of my life. . . . I am sure that I have known hundreds of people who have died. Of people who were close enough to be in my address book . . . whole letters of the alphabet have been deleted. There are no more E’s. There are no more W’s. 42-year-old gay man (January, 1997)
Although AIDS is clearly not a disease that only affects Gay Men, it has created a health crisis for the gay communities of the United States. As recently as 1996, men from the gay and bisexual community have
accounted for over 50% of the annual reported AIDS cases among American citizens (Centers for Disease Control and Prevention, 1997), and they have suffered from a much higher percentage of cumulative deaths from the disease. Consequently, there are many gay male survivors who have suffered unprecedented levels of loss in their social networks. Reports of gay men who have experienced the loss of 50 or more friends, partners, and acquaintances to AIDS are not uncommon (Odets, 1995; Schwartzberg, 1996). For nearly two decades, these men have carried a disproportionate burden of the epidemic. With the gay male communities in large urban centers of the United States achieving estimated HIV seroprevalence rates of 20% to 50% (Curran et al., 1988), gay male survivors face an ongoing threat of experiencing more deaths, despite dramatic advances in antiretroviral therapies. Grief hurts, physically and emotionally. Numerous thanatologists (Bowlby, 1980; Kubler-Ross, 1969; Worden, 1991) have reported that the individual grieving a single uncomplicated loss may experience a wide spectrum of responses including sadness, a need to cry, disorientation, anger, anxiety, a loss of concentration, and physical discomfort. Despite the personal distress, such symptoms are to be anticipated and are considered normal; underscoring that grief is a normal healing process for accommodating loss, and it is not a pathologic condition (Arnold, 1996; Strawn, 1987). No two persons experience grief and bereavement in This study was supported in part by a graduate fellowship award from the Association of Nurses in AIDS Care (ANAC). I am grateful to my master’s thesis committee for their support and expertise; they are Patricia Grimm, PhD, RN; Linda Rose, PhD, RN; Arlene Butz, PhD, RN; Richard L. Sowell, PhD, RN, FAAN; and Richard Ferri, PhD, RN.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 10, No. 5, September/October 1999, 22-31 Copyright © 1999 Association of Nurses in AIDS Care
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exactly the same way despite similar religious or cultural backgrounds. As humans are dynamic, organic beings, a person’s responses to loss are highly contextual and may vary considerably with subsequent deaths (Worden, 1991). Gay men have frequently been victims of social ostracism (Sowell, Bramlett, Gueldner, Gritzmacher, & Martin, 1991), and they may be estranged from their biological family and community of origin. Consequently, many gay men form “families of choice” comprised of significant others not related by birth or marriage. Unfortunately, the mainstream view of family theory remains rooted in the nuclear (biological) family model (Cody, 1995). This limited definition of family may inadvertently cause nurses to overlook the need for targeted bereavement services for gay male survivors. For the bereaved gay man, hiding his grief may seem preferable to confronting the complex social controversies concerning morality, sexuality, contagion, and shame that is associated with losing a loved one to AIDS (Daugherty, 1993). Adding insult to injury, social shunning and ostracism may interfere with the healing process of bereavement (Schwartzberg, 1996). Complicated Bereavements The inability to resolve one’s grief can be devastating. Unresolved bereavement, also termed complicated mourning by Rando (1992), poses a significant risk for the development of adverse health outcomes ranging from emotional distress (e.g., depression) to somatic disorders (e.g., insomnia), and even death (e.g., by suicide). Kastenbaum (1969) coined the term bereavement overload to describe the potentially unhealthy response that individuals may have following a series of consecutive, and often overlapping, losses that result in an accumulation of unresolved bereavements. Under such extraordinary circumstances, an individual experiencing mounting losses may become emotionally overwhelmed, physically exhausted, and spiritually demoralized; these conditions were also identified by Rando (1992) as contributing factors to the development of complicated mourning.
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HIV-Negative Gay Men Understandably, much of the AIDS-related research has focused on the HIV seropositive client. The feelings, thoughts, and perceptions of the gay man who is affected, but uninfected, by HIV remain largely unexplored. Frequently, HIV-negative gay men are mentioned only in the context of being a lover or caregiver to a person with HIV/AIDS. In the sincere efforts to provide support to persons infected with HIV, the needs of the HIV-negative gay man have gone either unacknowledged (Schwartzberg, 1996) or invalidated, and the development of targeted services (e.g., support groups) has become extremely rare (Odets, 1995). A deeper understanding of the context in which HIVnegative gay men live their lives is crucial if effective bereavement and HIV prevention interventions are to be designed.
Scope of the Investigation The literature on complicated mourning has identified high-risk factors for unresolved bereavements that would categorize AIDS-related multiple losses as a serious threat to the health and well-being of affected individuals in general, and gay men in particular. Despite the ample evidence documenting the needs of the bereaved, nurse researchers have yet to explore indepth the experiences of seronegative gay men living with multiple losses from the HIV epidemic. Therefore, within a phenomenological framework, this investigation explored the lived experience of being an HIV-negative gay man who has experienced multiple losses of acquaintances, friends, and partners to AIDS.
Methods The investigator recruited a purposive sample of HIV-negative gay male participants through personal networks and advertisements in gay community centers. Criteria for eligibility were as follows: be over the age of 18; be proficient in spoken English; and have experienced at least five AIDS-related deaths of partners, friends, or social acquaintances. The criterion for the number of deaths experienced was arbitrarily
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chosen, as one cannot objectively quantify the concept of epidemic-related multiple losses. The Institutional Review Board of the Johns Hopkins Medical Institutions approved the informed-consent process and the procedures used to assure the confidentiality and protection of the participants before participant recruitment or data collection began. Prior to data collection, the investigator began a bracketing journal in which personal and professional assumptions and preconceptions about AIDS-related multiple losses were recorded in an honest attempt to preclude these prejudices from influencing the investigative process. Open-ended interviews were conducted with each participant. The investigator began by posing the following question: “Please tell me about your experience with AIDS-related multiple loss?” Interviews were audiotaped and transcribed verbatim by the investigator. Approximately 2 to 4 weeks after each interview, participants were contacted to provide an opportunity for additional comments and questions, or to discuss the effects of the interview experience on the participant. Analysis of the narrative data closely followed Colaizzi’s method as described by Moustakas (1994, p. 122). The investigator read through each transcript individually while listening to the audio recording to get a sense of the narrative as a whole. Subsequently, each text was examined and coded for words, phrases, or sentences that related to the experience of multiple losses. Statements were grouped into categories of like meaning. Overall themes emerged across individual transcripts, and they demonstrated how similar concepts or experiences were perceived differently by each participant. The trustworthiness of the interpretations and the auditability of the analysis process were evaluated by two nurse researchers with doctorate degrees, who have expertise in qualitative research methods and HIV/AIDS.
Results
referred to the investigator as potential participants, and both declined to participate for personal reasons. Five of the men lived in urban settings, and one resided in a rural community. One participant reported approximately 12 losses among his acquaintances, friends, and partners. Another reported dozens of deaths. However, four of the men estimated that their AIDS-related losses numbered more than 200 over the 15-year period of the HIV epidemic. Themes Common Across Narratives Although each of the participant interviews (represented by pseudonyms to protect the men’s privacy) provided a unique perspective on the experience of living with multiple losses, the themes that emerged across narratives elucidated the commonalities shared by these men. Ten categories of like meanings were identified and conceptualized into two overarching themes, the meaning of multiple losses and the management of the losses. Meaning of multiple losses. The first of the two themes that emerged across narratives described how experiencing repeated deaths resulted in more than just loss for these men. It imposed multiple losses. Initially, each of the men was able to recount the loss of friends, sharing painful moments in which it became abundantly clear that companions were no longer available (alive) for camaraderie. In numerous poignant vignettes, the grim day-to-day realities resulting from the loss of close friends were elucidated. Over the years of the AIDS epidemic, the deaths mounted. The repeated, and sometimes overlapping, loss of friends left the men feeling sad, angry, fearful, lonely, and empty. Words and phrases such as horrors; traumas; tragic; and confusion, frustration, and extreme sadness permeated the narratives. The increasing loss of friends translated to the decimation of one’s family of choice. This was a particularly salient issue for Peter, who lamented,
Sample In this study, six HIV-negative gay men who had experienced AIDS-related multiple losses provided a plethora of information. They all had some college education, were Caucasian, and ranged in age from 38 to 60 years old. Two African American gay men were
So much of the warmth and support I had is gone. . . . Like many [gay] people come to the cities and start lives of their own to get away from families who were not understanding and accepting. You know, these people have been family . . . friends can become so close that they have
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become, at least, if not more important than some of the blood relatives that you grew up with. . . . How do I overcome this sense of isolation I have come to feel? This is just so scary, very scary. After experiencing years of accumulating deaths within their social networks, the men began to perceive a loss of community. Disability and death shattered meaningful long-term relationships. The men described how vivid images and memories of their fallen comrades had become intrusive and omnipresent. Their neighborhoods were replete with ghostly reminders of happier times when the community celebrated its freedom and brotherhood; a time when the specter of funeral services was unimaginable. As the deaths escalated over the years, the epidemic began to take its toll on the men’s sense of identity. The loss of self was associated with their disintegrating family structures and social networks. Only 42 years old, Terry illustrated the erosive influence of the chronic uncertainty and mounting fatigue on his sense of self with the following: So, sometimes I wander around aimlessly. I am kind of lost because I know what I want to do when I get a life, but I depend upon . . . my social structure or group, the people around me to know what’s next in life . . . the horrors, the overwhelming anguish that is associated with so much loss in my life. . . . AIDS and loss have just worn me out. . . . I feel myself fading away, passing away. Acute grief is frequently characterized by a transient sense of isolation from others. Usually, this uncomfortable feeling fades with time as the survivor eventually reintegrates into the social events in the nongrieving community. However, the repeated and overlapping deaths experienced by these men gave little opportunity for healing. They described an increasing loss of connection with others that had become chronic and that diminished their capacity to reestablish contacts or initiate new friendships. Troubled by guilt and anxiety, they vacillated between making new friends and avoiding socialization for fear that they might become emotionally attached to men with HIV infection and risk further losses in the future.
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At the same time, these gay male survivors perceived little understanding of their tragedies from heterosexual friends, family, and coworkers. They expressed clearly how the way society shows disdain for gay relationships, shows a lack of compassion for their peers with AIDS, and directs blame at gay men for spreading AIDS, had added to their sense of isolation. The inability of others to understand the context of being HIV negative in the midst of an ongoing epidemic compounded the problem. In response to a friend’s comment that he should feel lucky for having dodged the bullet [tested HIV negative], Jacques recalls, I remember saying . . . “What makes you think that makes me lucky? Do you think I look forward to being left by myself without all of you?” I said that “a part of me wishes I would go, too. What kind of life am I going to have without all of you?” All of the men believed that most people who are not gay do not understand their distress and, worse yet, that many heterosexuals do not care about the deaths of gay men. Losing so many friends at a relatively early age resulted in a loss of the natural course of life. The men expressed feelings of sadness, surprise, and bitterness over the way life had panned out. I am resentful that I don’t have the people to grow old with, my friends . . . to sit on the front porch in rocking chairs. It’s not meant to be . . . it’s like I have been cheated out of growing old with friends. These men were unprepared for so much death so early in life. It not only changed the way things used to be, but permanently altered images of the way life was supposed to be. They had lost not only their past, but also their future. The future was viewed as dismal, with images of loneliness and the continual struggle to replenish the decimated friendships. Management of the losses. The second theme across narratives described the ongoing challenges inherent in managing AIDS-related multiple losses. The participants’ lived experiences were fraught with
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distressing internal conflicts as each man struggled with extraordinary emotional, ethical, and existential issues. As a result of the multiple losses, the men were confronted with decisions that required in-depth introspection, a frequent review of one’s personal beliefs and values, and an ongoing reevaluation of one’s role in life. Their feelings, thoughts, and behaviors were described as being in continual flux; uncertainty was an incessant companion. Investing time and energy into relationships with men who might die from AIDS had been a source of internal conflict for the men. Deciding whether to initiate new relationships or to withdraw from socializing characterized the first management strategy described by the participants: engaging versus self-protecting. Peter’s dilemma with dating exemplified his unsettled and conflicting thoughts and emotions. In one moment, he was discussing his need to protect himself. “I just didn’t date for a while. I just didn’t want to go through the loss of dating. . . . I just don’t want to invest a lot in somebody that’s gonna die.” Moments later, he reframed his perspective, seemingly contradicting his earlier comments. There were certainly people to date, but they were all positive. . . . I wouldn’t let that stand in the way of being with somebody now. I think I would rather love somebody for a few years than not have somebody. . . . I think I’ve distanced myself enough. . . . If I met somebody now, I would encourage a relationship. On one hand, these men wanted to believe that they would welcome anyone into their life without regard to HIV serostatus. On the other hand, they felt a need to protect themselves from further loss, heartbreak, and depression. This internal conflict pitted the desire for warmth, socialization, love, and intimacy against the need for self-protection from the pain of further grief. It challenged the participants’deeply held personal beliefs and values, which led to ongoing introspection and reevaluation. I don’t necessarily socialize . . . with HIVpositive people only because my heart says, “Don’t do this to me.” After this many years, I still feel HIV-positive people and people with
AIDS reaching out to me . . . wanting my person and their friendship . . . it’s a difficult thing for me to do, I am not ready to go down that path again. . . . I have wavered about that decision because I am generally very open, accepting person. . . . My basic person tells me that it really doesn’t matter. My soul says that it doesn’t matter. . . . But, there’s a prudent, practical side of me . . . in an effort to take care of myself, I need to set that limit. . . . I have to be more practical, because this last loss has just almost debilitated me. It has almost just made me not be able to get out of bed, not go to work. The theme of internal conflict ran throughout the narratives. The men struggled with being discriminatory [by HIV serostatus] in their socialization behaviors and often chose more passive courses of action. For example, several men stated that staying home (i.e., isolating) allowed them to avoid the inherent conflicts. For all of the participants, the fear of engaging and the need to protect oneself contributed to a growing sense of isolation. The narratives revealed a second dichotomous management strategy, adapting versus escaping. In an attempt to manage the ubiquitous nature of the losses, they wavered between adapting their feelings, thoughts, and behaviors to the challenges at hand and finding a means of escape from the situation. For Peter, volunteering for this study meant recollecting painful memories of the AIDS epidemic and revisiting his grief. He described his conflicting emotions at the opening of his interview. Interviewer: Tell me, what is your experience with multiple losses from AIDS? Peter: It’s been pretty severe. I was dreading this tonight actually. It started this afternoon. I started getting that old anxiety that I got in the mid-80s, and I just didn’t want to kind of open it. . . . I want to do this, but I don’t, you know? . . . I am trying to blot it out of my mind, not blot it out of my mind, I can’t. Despite the rising anxiety, Peter was intrigued with proceeding with the interview. As with the other participants, Peter began recalling friends with sadness and, at times, with heart-warming vignettes. This time,
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he chose to reminisce and confront the grief. Adapting to the mounting AIDS crisis, many of these men volunteered for AIDS organizations, assisted friends with managing their medications and treatments, and openly battled the societal stigma and discrimination they encountered. In contrast, there were times when confronting the daily realities of AIDS became so overwhelming—the sadness, fatigue, and anxiety so debilitating—that escape seemed prudent. Escape strategies included overworking, physically moving to a new location, avoiding gay newspapers (i.e., obituaries), and frequent vacationing in remote areas. Sadly, for some, escaping meant entertaining thoughts of suicide. In the following, Chuck describes how hopelessness had affected his outlook: I told him that I was going to . . . go ahead and kill myself. . . . Because there were a lot of times I did want to kill myself. I didn’t want to be around. Why bother living? It’s so hard. It hurts so much. Everybody is gone, and I miss them so much I want to be with them. . . . I don’t completely trust myself around it [suicide] . . . it’s a scary thing to think about, but I still do think of it as a viable alternative. Although most of the men contemplated not caring for someone with AIDS or not volunteering in AIDSrelated activities as a means of escape, they admitted that it was more easily said than done. Their deeply held values and beliefs—their sense of duty and compassion—deemed personal inaction to be an unacceptable choice. In the face of ongoing adversity, these men were continually confronted with images of debilitation and death. Not surprisingly, such traumas led to the emotional numbing and normalizing death. The men spoke of being “shell-shocked” by the onslaught of deaths. As a protective response, these men become emotionally numb to the decimation that they were witnessing. This blunting of one’s feelings influenced their ability to experience joy or happiness. One man described life as “gray.” Another expressed his resignation to the reality of epidemic loss and how it had become integrated into his life with the following:
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this is kind of horrible to say, but I think that it [death] has just become normal . . . a part of who I . . . it’s just like a fabric of my life. For these men, death was not a distant and abstract concept. Death was palpable; it was an omnipresent companion. In fact, four of these HIV-negative men expressed little or no fear of acquiring HIV infection. Epidemic losses had diminished the ability—eroded the willingness—to be ever vigilant about safer sex. Sounding fatigued, Terry spoke with a tone of resignation: I think fear was the big motivator to not become exposed to HIV for many years and I can’t, have not, sustained that level of fear, and so it requires a certain amount of vigilance on my part to not do those things that put me at risk for HIV. . . . I used to think that the worst thing there was would be to die of AIDS, and you know what? I don’t think so anymore. Dying of AIDS doesn’t scare me at all. Fellow participants echoed Terry’s changing perceptions about death (and the fear associated with it) as they discussed experiences with assisted suicide. With a strikingly unemotional tone, the participants described how the deaths of friends and partners with AIDS had been planned when the quality of life had ceased to be acceptable. For these men, there was little conflict over one’s right to self-deliverance after a long-term battle with opportunistic infections and HIV-related symptoms. In apparent contrast to their feelings of resignation, the men managed their grief by validating the losses. To honor the deceased, the participants created panels for the NAMES Project AIDS quilt, kept mementos and keepsakes, collected obituaries, and maintained a list of names of those who had died. One participant ritualistically recorded the names of friends diagnosed with AIDS. Following the friend’s death, he would draw a single thin line through the name. He retrieved this list during the study interview and, while skimming over the more than 200 names before him, softened his voice to relay brief vignettes about selected individuals on the list. When asked what significance such a list could have, Peter responded, “I am just
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overwhelmed at the names. But, you know, it also brings back [crying] . . . such wonderful memories, good memories, good . . . good memories.” Similar efforts to validate the losses included maintaining contact with surviving families and friends, making memorial donations, and performing rituals associated with the deceased. Decrying societal homophobia and AIDS phobia, one participant explained that actions to validate the deaths of his friends might serve to validate their lives as well. A final common thread among the narratives was finding hope in the midst of the AIDS epidemic. Despite the overwhelming tragedies in their lives, these men expressed hope for a day of more joy and less grief. Some spoke of the benefits they had gleaned from their experiences. These bittersweet returns included discovering greater self-reliance, forming relationships with families and friends of the deceased, and building an increased appreciation for the important things in life. For some, spiritual beliefs were the foundation of hope. For others, it was the challenge to survive in spite of the adversity. For one participant, the epidemic had actually “put a face on gay men” and provided “middle-America with a more realistic image” of homosexuals. Despite all of the benefits recounted by the participants, each of the men was quick to state that the benefits were not worth the price that had been paid.
Discussion The lived experience of being an HIV-negative gay man with AIDS-related multiple losses is complex and multifaceted. The mounting deaths of loved ones and the decimation of social networks produced cumulative effects that permeated the lives of these participants. The epidemic had greatly affected the men’s ability to form and maintain relationships. Images of the future had been adversely altered. Frequently referred to as the worried well, the HIV-negative gay men in this study were certainly more than worried and, by their own report, not doing particularly well. The internal conflicts described by the participants in this study—adapting versus escaping and engaging versus self-protecting—are not dissimilar from the struggles of “functional and dysfunctional
engagement and detachment” described by Carmack (1992) in a study of 19 gay individuals coping with multiple losses from AIDS. Carmack asserted that gay persons grapple with their own personal level of involvement with gay men with HIV (or at risk for HIV). This struggle with their personal values balances the desire to treat the infected men honestly and equitably while protecting themselves from further pain from anticipated losses. McGaffic and Longman (1993) uncovered a similar theme in the connecting and disconnecting behaviors in their study of gay widowers. The results of this investigation support the assertions that AIDS-related multiple losses can be personally overwhelming, can place individuals at risk for bereavement overload (Strawn, 1987), and may result in a multiple loss syndrome (Klein, 1994). The data support previous findings that mourning a death from AIDS may be complicated by stigma, lack of social support (Biller & Rice, 1990; Worden, 1991), lack of social sanction, lack of support from their gay relationships and gay family (Cody, 1995; Sowell et al., 1991), lack of understanding among heterosexuals concerning AIDS-related losses (McGaffic & Longman, 1993), and social ostracism from religious institutions and health care professionals (Williams & Stafford, 1991). The degree of emotional numbness and normalization of death detected in these men was extraordinary. Many of the participants characterized their numbness as an unhealthy, undesired, and dysfunctional response. Persons affected by AIDS-related multiple losses may demonstrate emotional dampening (Neugebauer et al., 1992) and demoralization (Schochet, 1991). It is disturbing that the normalization of death seems inextricably connected to the fear of HIV infection and a willingness to maintain safer sexual behaviors. Likewise, the nonchalance with which the men discussed assisted suicide is of concern. Having noted the lack of support from others for their grief, it seems unlikely that these men would talk about controversial AIDS-related issues (e.g., assisting someone to take his or her own life) contributing to their internal emotional and ethical conflicts. Professionals unaware of the impact of AIDSrelated multiple losses may arrive at erroneous
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conclusions about the intentions of uninfected survivors. For example, although the men in this study admitted to avoiding intimate relationships with HIVpositive partners, their intent was reportedly to protect themselves from further episodes of loss. One may have superficially assumed that the men were concerned with becoming HIV infected. On the contrary, survivors with more than 200 losses, which were the majority of participants in this study, reported little or no fear of acquiring HIV infection. For these men, death had become more familiar and less fearful. A phenomenological approach was appropriate for this investigation, because there have been few studies of AIDS-related multiple losses. Interviews with a purposive sample of individuals who have had significant experience with AIDS-related multiple losses uncovered valuable insights into an unprecedented phenomenon. These findings are limited, however, by the nature of the sample. The experiences of these well-educated, White gay men may not be representative of other communities that are being disproportionately affected by the AIDS epidemic. Younger gay men, persons who are not gay, and women were not represented in this study. One of the unique aspects of this study was that it explored the perceptions of HIV-negative gay men who were affected, but uninfected. One of the participants described how disclosing his HIV status as negative had resulted in resentment from others because of his lack of infection. It seems clear that uninfected gay men suffering the effects of multiple losses may not feel comfortable seeking the support—may not feel deserving of the support—and assistance that they need, resulting in greater alienation and isolation. The participants in this study described the overwhelming nature of AIDS-related losses and the deleterious effects on their sexuality, self-esteem, and ability to socially engage. The HIV epidemic affects the physical, emotional, and spiritual health and well-being of the survivors, whether they are infected or not.
Implications for Practice, Research, and Education In this study, AIDS-related multiple losses have been shown to be overwhelming, stressful, and
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potentially damaging to one’s well-being. The grieving process may be facilitated by nurses who ask clients about their loss experiences, listen to their stories, and make mental health referrals when appropriate (Mallinson, 1999). Nurses can promote optimal outcomes by establishing a clinical environment in which they are able to provide privacy, are available to the griever, and can engage the griever with empathy and compassion. By removing the shame, blame, and stigma from AIDS-related losses and providing a safe atmosphere in which to discuss grief and loss, practitioners may facilitate healing while fostering open and trusting nurse-client relationships. The findings of this study support Schwartzberg’s (1992) conclusion that current theoretical models of grief are not adequate for conceptualizing the multidimensional and multifaceted aspects of multiple losses and bereavement overload. Theory development—be it grief and bereavement, stress and coping, or prevention theory—must consider the fact that epidemic losses often occur over an extended period. The AIDS-related losses have been chronic and, often, overlapping. Notably, the number of research studies focused on AIDS-related multiple losses seemed to have paralleled the number of AIDS-related deaths, both of which peaked in the early 1990s (Carmack, 1992; Daugherty, 1993; Klein, 1994; McGaffic & Longman, 1993; Neugebauer et al., 1992; Viney, Henry, Walker, & Crooks, 1992) and diminished quickly thereafter. Nurses cannot afford to assume that just because the current AIDS mortality rate has abated that the many losses over the last 20 years have ceased to have adverse effects on the survivors. It is conceivable that other populations with high HIV seroprevalence rates (e.g., injection drug users) are currently experiencing similar tragedies. How are the effects of AIDS-related multiple losses influenced by racism, socioeconomic status, or other variables that characterize the marginalization of communities? Nurse researchers are encouraged to explore the multiple loss experiences across various client populations with HIV to identify patterns of response, effective interventions, and relevant health outcomes. This study offers several implications for HIV prevention efforts. First, the participants reported that increasing exposure to unprecedented levels of death
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JANAC Vol. 10, No. 5, September/October 1999
served to diminish their fear of acquiring HIV infection. Prevention programs are urged to assess the impact of multiple losses on the willingness of persons to maintain safer sexual behaviors rather than assume that the fear of HIV is universal and unremitting. The valid assumptions of the early 1980s (e.g., everyone is fearful of acquiring HIV infection) must be continually reassessed and challenged throughout the course of the epidemic. Having support groups that integrate personal discussions of grief and loss among one’s social network can provide the validation, socialization, and support needed by many gay men. Secondly, the impact of homophobia must be examined for its role in demoralizing the uninfected survivors and increasing the risk for unsafe sexual behaviors (Grossman, 1991). Homophobia underscores and augments the disenfranchisement of AIDS-related grief experienced by many gay survivors (Mallinson, 1999). Nurses are challenged to confront their personal stereotypes and misconceptions about gay men and persons with AIDS. Clinicians are urged to elicit suggestions from their clients on how to improve access to health promotion and disease preventive services— how to establish a welcoming clinical environment— for persons in sexual minority communities (i.e., gay, lesbian, bisexual, and transgendered persons). Finally, holistic HIV prevention programs must consider that behavior change that occurs within the context of a client’s life. Therefore, nursing’s definition of family must be culturally appropriate. The participants’ perception that multiple loss experiences were not being understood by others parallels the conclusions from other studies (Cody, 1995; McGaffic & Longman, 1993; Sowell et al., 1991), in which health care professionals did not comprehend the nature, diversity, and depth of gay relationships and the importance of the gay family to gay persons. Providing for an interactive dialogue will not only improve nurse-client rapport, but may allow information to flow in both directions. Nurses that address AIDS-related grief have the opportunity to affect their client’s health outcomes. Not providing the appropriate care for survivors of AIDS-related multiple losses may abandon those at highest risk for unhealthy outcomes (e.g., becoming HIV infected) to fend for themselves. Providing culturally appropriate care, on the other hand, may
require that nurses search their hearts, identify personal prejudices, develop new insights, and address the issues and concerns of the communities with which they may be uncomfortable or unfamiliar. It is in that search that we will find the hope and humanity that so characterizes nursing’s role in the world.
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