Metasynthesis of Qualitative Research on Living With

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Qualitative studies of people living with HIV infection are enlcial for providing ..... family, there was the nuclear family, kids, beautiful flowers, exquisite music, ...
Metasynthesis of Qualitative Research on Living With HIV Infection Julie Barroso Gail M. Powell-Cope

Qualitative studies of people living with HIV infection are enlcial for providing direction for practice and research because they provide the emic perspective. As more of these qualitative studies are conducted, researchers are challenged to develop ways to synthesize the findings for research and clinical practice. The purpose of the metasynthesis described in this article was to understand the experience of adults living with HIV infection as described in published research. Findings from the studies were categorized into six overarching metaphors: (a) finding meaning in HIV/AIDS, (b) shattered meaning, (c) human connectedness, (d) foc1lsing on the self, (e) negotiating health care, and if) dealing with stigma.

METHODS Metasynthesis is a method of synthesizing qualitative accounts to construct adequate interpretive explanations from multiple studies. Although several authors have described the process of metasynthesis (Burns, 1989; Cohen & Knafl, 1993; Estabrooks, Field, & Morse, 1994; Jensen & Allen, 1994; Noblit & Hare, 1988), there is little in the way of specific guidelines to assist in this process. 'This metasynthesis began with extensive computer searches to identify the qualitative studies that focus on the experiences of people with HIV. We examined only studies published in refereed journals because these studies had already been peer reviewed, ensuring their quality. Forty-five articles from refereed journals were initially examined. All of the articles reported research that was conducted in the United States and were in English. The experience of being seropositive is so different and so much more bleak in developing countries that we felt that the experiences of these people would not be comparable to those of people living in the United States. After much discussion, we decided to exclude studies from other Western countries because most of them have some form of socialized medicine and a much more equitable distribution of needed resources, such as medications, than what is found in the United States. We developed and pilot tested a detailed critique form, based on Burns's (1989) standards for qualitative research, to evaluate these articles. We used Burns's five standards, each with multiple criteria: (a) descriptive vividness, (b) methodological AUTHORS' NOTE: The authors would like to acknowledge the contribution of the late Dr. Pat Fryback, who was instmmental in the initial formulation of this project. QUALITATIVE HEAUH RESEARCH, VoL 10 No 3, '0 20110 Sage Publications, Inc

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congruence, (c) anal ytical preciseness, (d) theoretical connectedness, and (e) heuristic relevance. Both of us reviewed half the articles and scored them using the checklist, and one researcher reviewed articles deemed unacceptable by the other researcher. Articles receiving unfavorable ratings from both of us were excluded. Questionable articles were discussed until we reached a consensus about whether to include them in the metasynthesis. Study findings were examined using constant comparative analysis. Study themes and conceptual categories were coded, compared, and sorted, focusing on conditions, strategies, and consequences. We attempted to translate each category in relation to categories across studies. Finally, the synthesis was written and revised several times until a coherent whole was formed. The metasynthesis included 21 articles published between 1990 and 1995. This project was started in mid-1996. Twelve of the articles were in nursing journals, 6 in interdisciplinary journals, and 3 in discipline-specific, nonnursing journals. The studies included 307 participants, of which 279 were men and 28 were women. The majority was Caucasian; others were African American and Hispanic. Most studies used grounded theory, descriptive or naturalistic, or phenomenological designs and methods.

Findings The overarching metaphors developed from this metasynthesis were (a) finding meaning in HIV / AIDS, (b) shattered meaning, (c) human connectedness, (d) focusing on the self, (e) negotiating health care, and (f) dealing with stigma.

Finding Meaning in HIVIAIDS Finding meaning in HIV / AIDS reflected the existential domain of living with HIV / AIDS and included references to death and dying, other losses, and surviving HIV infection (Allan, 1990; Cherry & Smith, 1993; Coward, 1994; Gaskins & Brown, 1992; Gloersen et aI., 1993; Hall, 1994; Hudson & Morris, 1994; Kendall, 1992, 1994; Lamendola & Newman, 1994; McCain & Gramling, 1992; Powell-Cope, 1995; Ragsdale, Kotarba, & Morrow, 1992, 1994; Schaefer & Coleman, 1992; Schwartzberg, 1993,1994; Weitz, 1989). Finding meaning began with introspection about life and the self, led to new strategies for living, and resulted in the assimilation of HIV / AIDS into one's life. Finding meaning was predicated on the appraisal of HIV as ambiguous and interpretable, allowing for a sense of personal agency. People who searched for meaning were likely to view HIV as an opportunity to grow or to find new meaning in life. In Allan's (1990) study. one participant said, You have got to control your circumstances or your circumstances will control you. That is just a good way of manipulating the world, but if you just draw the line between manipulation and management, you manage the world. Then you can to a greater extent manifest your own destiny, circumstances, and situation. (pp. 60-61)

A participant in Weitz's (1989) study said,

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Being active about this disease, whether it involved drinking a certain kind of tea or standing on your head twice a day or doing something, something that gives the patient a feeling of control over his own life that if you do those things, this might help you a little bit. ... It's a sense of being in control, of being actively involved in your own health, which in itself produces health. (p. 277)

Finally, a participant in Gloersen et al.' s (1993) study said, I realized that nobody really knows how long you can live with AIDS. So I'm going to choose how long I will live and what I will do with my life-not the doctors or my family or my disease but me. (p. 51)

Accepting AIDS as a terminal illness while maintaining a hope for a cure was a major challenge in finding meaning. In Schaefer and Coleman's (1992) study, one participant said, "I, by rights, shouldn't be here. It's been five years. Five years ago I thought I had a year. Who knows, maybe I'll be here until they have a cure" (p. 25). For the women in one study, having hope was fostered by taking care of their children and working to prevent AIDS in others (Coward, 1994). Men and women in another study maintained hope through religion, spiritual renewal, involvement in work or vocations, and belief in miracles (Hall, 1994). One participant in Hall's (1994) study spoke of an incident that occurred when he was swimming: In that instant, there was a miracle. God raised up a mirror to the edge of the pool and reflected all the wonder, grace and love that I had been feeling back to me. I could see white gold light going through me .... I was transported outside the hospital. ... Across the street there was a ball of light and I knew that it was God. I knew that God had taken me right to heaven at that point and let me see it. ... Heaven was so peaceful. (p. 287)

A participant in Gloersen et aL's (1993) study said, "It just all boils down to learning to be positive and not becoming depressed about how awful things could be. I am alive and I am hopeful about that" (p. 51). Although religion offered some people hope and a means to cope with HIV, those in other studies indicated that this was not often the case. One African American participant in Hudson and Morris's (1994) study said, I think the Bible has been miSinterpreted by both Blacks and Whites. God is love, but you wouldn't know it by the way you've been treated by these churches if you're gay. ... In the Black church, the family preacher might come by to visit, but he wouldn't want to acknowledge the grief and loss you experience when your lover dies. (p. 41)

When organized religion provided little solace, people often felt a deepening sense of spirituality, expressed as a belief in God or an appreciation for prayer. One study participant said, I'm religious, believe in God. Generally, I've turned my faith and everything over to God. He'll take care of me, is really what my belief is, that He kinda takes care of everything. There, it's an ongoing process, turning things over.... Let God worry about what' 5 going to happen in the future, trust that He will take care of you and things will work out OK. (Ragsdale et al., 1994, p. 440)

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A participant in Schwartzberg's (1994) study said, "I've never had a very strong sense that I could get rid of this [HIVJ, heal myself that way, but I do have a strong sense that I can heal myself spiritually and emotionally" (p. 596). Finding meaning in HIV I AIDS translated into practical coping mechanisms to reduce uncertainty, cope with loss, and face death. In addition, finding meaning often translated into assuming an active and flexible coping stance in existential struggles. For example, women reported intentionally letting go of meaningless activities or things over which they had no control to focus on activities that were important, such as nurturing relationships with others (Coward, 1994). Others phrased this letting go in terms of reevaluating life priorities or reprioritizing values and time commitments. One man said, It's so much easier to focus on what's important now than it was before .... Getting my priorities in order ... and realizing that [AIDSJ isn't something that I need to be upset about and letting it go and fOCUSing on what is really important in life. It gives you a whole different perspective. And that's a good thing, actually. (Powell-Cope, 1995, p. 48)

Another man said, "My volunteer work makes me feel good; I'm changing the future, and that is something that will live beyond my time" (Coward, 1994, p. 333). Several researchers indicated that the altered sense of time that came from facing death stimulated people to make the best of whatever time they had left and to live in the present. One participant said, Finding meaning in all this does not have anything to do with all those things you always wanted to do, or traveling to exotic places before you die. No, the closer one gets to survival needs, the more existential and meaningful one's life .... We can no longer avoid meaningful and spiritual awareness by piling up on materialistic comforts that stand between us and survival. Spirituality and creativity are central to survival itself. (Kendall, 1992, p. 35)

A man in Schwartzberg'S (1994) study said, "Get everything you can out of living: do what you want to do, enjoy it. This feels like a positive thing, not a desperate thing-trying to treasure what's happening now" (p. 598). Finding meaning involved the assimilation of the diagnosis into one's life, one's view of the self, and one's world view. One author quoted Nietzsche on the ability to extract personal growth from profound adversity: "That which does not kill me, makes me stronger" (as quoted in Schwartzberg, 1994, p. 601). Assimilation, growth, and adaptation meant that the person was able to get on with life without HIV as the sole focus and to incorporate contradiction, uncertainty, and paradox into life. One informant said, Not putting it aside, not hiding it or forgetting it, or anything like this,just taking it away from the very center of my world, just pushing it back over here: It's just another little part I've got to deal with. Once I got it out of the center of my head, that was the biggest thing that helped. (McCain & Gramling, 1992, p. 278)

The assimilation of HJV allowed people to avoid immersing the self in panic, dread, and depression.

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Shattered Meaning For some, living with HIV disease brought what Schwartzberg (1993) termed shattered meaning (Cherry & Smith, 1993; Coward, 1994; Gaskins & Brown, 1992; Kendall, 1994; Lamendola & Newman, 1994; McCain & Gramling, 1992; Ragsdale et al., 1994; Schaefer & Coleman, 1992; Schwartzberg, 1993, 1994; Weitz, 1990). For these people, HIV represented irreparable and massive loss and led to overwhelming fear. One informant said,

r don't know if I really want to get old; there's not a lot of people left in my life, and I'm worn out trying to make new friends, have them get sick and die. I don't want to be old and alone. I don't know what value there is in surviving just for the sake of surviving. I think, most of the time lately, death might be a welcome relief from what this is, what life has become. (Schwartzberg, 1993, p. 485)

Many studies noted that some people regarded HIV as a death sentence. One participant in McCain and Gramling's (1992) study said, At first I went suicidal. I didn't care about anything at all. One of the main things I thought about right at first was how many people I have killed" (p. 277). People learned to live with dying as the illness progressed; there were increasing physical problems and multiple losses as the person living with AIDS attempted to deal with the loss of job and career, material possessions, independence, sexuality, the love of others, and the deaths of other people who had AIDS. One participant said, "I can't really be sexual. I know I can within the realm of being safe-body rules and all that-but who wants to touch somebody who has AIDS?" (Gaskins & Brown, 1992, p. 118). Another informant in Lamendola and Newman's (1994) study said that his lover dying from HIV infection was "a major turning point in my life. It changed everything; my lover died, I built a wall around me. I just didn't care" (p. 16). Many studies noted that the respondents reported avoiding support groups because they were too depressing. One participant said, U

I no longer associate with persons with AIDS. r think it was wonderful and very important, but the group was dropping like flies and I couldn't stand it-in a period of three weeks, we buried two. You get to meet somebody and in a situation like that you get to love somebody and all of a sudden they are in the hospital and then they are dead. It is really stressful. (Gaskins & Brown, 1992, p. 118)

As the disease progressed, some focused excessively on clinical symptoms and treatments and were consumed with isolation, hopelessness, and despair. As one man said, I'm fast lOSing my friends. I can't keep up with them. Things don't heal. ... I have no social network now. I don't bother with my friends. I don't want my friends to see me as r am, and a lot of them don't want to see me either.... We just don't connect anymore. (Cherry & Smith, 1993, p. 195)

Another man in Weitz's (1990) study said, [Before getting AIDS) I was out all the time, I loved to be around people. I hated to be by myself. But now, I find that I don't like to be around people that much except jf

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it's people I know that are not going to reject me because I don't want the rejection. I don't want to be hurt; I'm tired of being hurt. (p. 34)

Some had a fatal d~terminism, believing that they were going to die no matter what they did. One informant said, I've thought a lot about your question about how I cope with the disease. I guess I'm not coping with it. I've allowed it to change my whole life, and that's probably why I'll lose my battle, unless I can change and go back in time. (McCain & Gramling, 1992, p. 280)

In shattered meaning, faith, religion, or spirituality offered little comfort. People living with HIV often felt alienated from mainstream religion. HIV became an opportunity for some to let a latent self-loathing become overt. For some, HIV was punishment for gay men being too sexual, too hedonistic, and too ind ulgent, or HIV was viewed as a contamination of the self. HIV was viewed as a confirmation of powerlessness; these men faced it with resignation. One participant said, We were playing with fire, and we got burned .... I was operating with the attitude "anything goes, there's nothing I won't do"-any numbers of people, glory holes, wild scenes ... that sort of stuff, and now I look at it as being pretty disgusting. (Schwartzberg, 1993, p. 485)

Participants who experienced HIV as shattered meaning had no framework for understanding HIV or the world. They were bewildered, embittered, and depressed. One participant said, "Lately there hasn't been apurpose to life, with the loss of work, partner, and family. Sometimes I just don't think there is meaning" (Schaefer & Coleman, 1992, p. 20). Another said, Well, there are a lot of people who are dead, and it shouldn't be .... It's the most serious disruption of my life that I have yet experienced. It steals the time that was rightfully ours, and there's no replacing that. There were things I thought I had more time to do, relationships that r thought I had more time to savor. That whole process has been foreshortened. (Schwartzberg, 1993, p. 488)

Human Connectedness Human connectedness involved initiating and sustaining meaningful relationships with friends and family members in the face of increasing alienation and separation from others. Although the tangible or instrumental aspect of support was viewed as important, the basis of human connectedness was the emotional support given and received and the sense of belonging that came from social interactions. Following an AIDS diagnosis, the process of human connectedness included coping with the loss of some relationships; reconstructing old ties; reaffirming positive ties with family, friends, and lovers; and constructing new social networks (Allan, 1990; Cherry & Smith, 1993; Coward, 1994; Gloersen et al., 1993; Hall, 1994; Hudson & Morris, 1994; Kendall, 1992,1994; Powell-Cope, 1995; Ragsdale et al., 1994; Schaefer & Coleman, 1992; Schwartzberg, 1993, 1994; Weitz, 1990).

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Human connection occurred on two levels: One level was with the larger community, and the second level was with friends, families, and others. Several studies that included only gay men reported that HIV was the catalyst for strengthening their ties to the gay community. Because of their community involvement, many gay men developed a heightened awareness of gay politics, learned to appreciate the diversity among the gay community, and developed a sense of belonging to the gay community. One man said, I can tell you one thing: Being diagnosed with AIDS has certainly radicalized me. I've got nothing to hide from nobody. I am who I am and I'm proud of it. I don't have to worry about being embarrassed if someone found out I was gay. They can think of me as a flaming queen if they want. I'm OK with myself now and that feels real good. (Kendall, 1992, p. 32)

A participant in Lamendola and Newman's (1994) study said, "Helping out around here [at the center], that gives me the feeling like I'm not just a piece of clay or something. I've met people here that I really care about. It's kind of family for me" (p. 18). Activists enjoyed working with others who shared their social and political concerns. One man said, I can get this sense of being in an army of sorts, of people that are trying to fight a disease, and also the prejudice, and the discrimination and all the stuff that goes along with it. And hopefully, down the line there will be some sort of universal insurance out of this, national health, and so there are a lot of things to be achieved. (Schwartzberg, 1994, p. 597)

On the interpersonal level, people with AIDS had to reconstruct social networks according to the new boundaries set by the disease. Some people replaced former social networks that were not supportive after the diagnosis of AIDS. One participant said, When I told my stepfather, he told me to get out of his house. It was a nightmare. That was two years ago, and that was the last time we spoke to one another. I came out to California because I have some cousins out here. They let me stay with them for a few weeks, but then they told me to find another place to stay. So that's how I ended up at an AIDS shelter. (Hudson & Morris, 1994, pp. 41-42)

However, news of an HIV diagnosis could also bring families closer together or end previous conflict. One man in Hall's (1994) study said, "I think I have really close family support ... my mother, father, brother, and niece, and nephew. My grandmother and mother came to visit me this weekend" (p. 289). One woman in Coward's (1994) study spoke about the support she received from her health care provider: My nurse practitioner's always talking to me, asking me how I'm doing, she's somebod y who cares. She lets me know what's going on, keeps me willing. Nurses are my family in a way, they know about my situation, and want to be sure I'm okay. (p. 334)

One man spoke of attending a funeral for a friend in Schwartzberg's (1994) study: There was a collectiveness about it. I looked around and I knew just about everybody who was there, and I knew a lot of them to be infected themselves. A lot of families were there, and so it plugged me in at a lot of levels: there was the gay

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family, there was the nuclear family, kids, beautiful flowers, exquisite music, everything. (p. 597) Strategies for establishing human connections included joining support groups, reaching out to others to receive and to give information or support, and accepting help from others. Behaviors identified as supportive included listening, being there, touching, trusting, accepting, empathizing, obtaining information, and reciprocating (Powell-Cope, 1995). One person said, "In groups where I feel a lot of connection to other people we would get to those intimate moments where everything seems worthwhile again and I feel a part of life and what life means" (Kendall, 1992, p. 31). A man in Schwartzberg's (1994) study said, I wouldn't be able to survive without Positive Directions [an HIV-positive support group]. It's empowering: the brotherhood, the camaraderie, the sharing, what we reinforce in one another.lt's like people with any kind of cause, or struggle-there's a lot to be gained in the struggle itself, and sharing it. (p. 597)

Finally, a man in Kendall's (1994) study said, I think what I look for is creating a community-a tribe. It's wanting that group, that community, that tribe where one is member, one is valued, one's a leader; but not a leader, for everyone is a leader. It's a special sense of belonging and being valued. No one is kicked out of a tribe-you're there, a part of the group. (p. 31) Several authors proposed that connecting with others could be expressed as the need to establish intimacy, either sexually or platonically, with other human beings, particularly with others with HIV and with lovers and/ or partners. Some desired a sexually committed relationship, yet establishing and maintaining sexual intimacy with lovers were problematic because of the possible transmission of HIV. One man said, "We have not had sex in about two years. Not his choice, my choice. He's negative .... After I got sick, we attempted to have safe sex, but I just couldn't-the thought of killing him, I couldn't handle. I still can't" (Powell-Cope, 1995, p. 53).

Focusing on the Self Focusing on the self was defined as a set of actions that participants took to enhance both their physical and emotional health. Focusing on the self provided a sense of control over HIY, and these actions helped to reduce uncertainty about health matters (Allan, 1990; Barroso, 1995; Coward, 1994; Gaskins & Brown, 1992; Gloersen et aI., 1993; Hall, 1991, 1994; Hudson & Morris, 1994; Kendall,1992;McCain & Gramling, 1992; Powell-Cope, 1995; Weitz, 1989). Many people with HIV stopped high-risk behaviors, such as excessive alcohol use and illicit drug use. One woman said, [It is] good living. You know, no more staying up till 3:00, 4:00 in the morning. If that line of coke is sitting there and everybody in the room's doing lines of coke, I walk away. It's just not part of my life. (Barroso, 1995, p. 50) Many people spoke of improving their diet, getting adequate rest, and exercising. One man said,

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I am still on the all-vegetable diet. I am doing those crazy exercises. I quit doing them for a few days, and I could tell the difference in my energy level. I know it has changed my life, 'cause I never used to wake up 30 minutes before the alarm goes off. (Hall, 1994, p. 288)

Gaskins and Brown (1992) termed these activities the everyday work of living with HIV. Many respondents felt that the actions had to be taken daily to have a lasting impact on their health. One respondent said about exercise, "I am doing more of it. I am more serious about it. I have always been pretty good about working out, but now I put more emphasis on it. I get more involved" (Allan, 1990, p. 59). One participant in PoweU..cope's (1995) study spoke about trying to prevent infections in himself and his lover: Well, I've become really anal about cleaning, I guess. I clean all the time. I clean everything, I disinfect everything.... And cats, [the doctors] told us that if [you're HIVpositive and} have a cat and you clean the box, make sure you wear a mask and rub. ber gloves. What is the point? Why would you bring something in your house that you have to handle like nuclear waste? I'm not gonna do that. (po 49) Most participants also took active steps to reduce stress and to maintain a positive attitude. This did not mean that participants were relentlessly cheerful regardless of their circumstances; rather, they did not permit themselves to get caught up in a spiral of negative thoughts and emotions. One participant said, Stress is like a tug of war, and you should remember that the stress is not freefloating but it has a source and one of the ways to overcome it long term is to examine the source and what can I do to remove the stressful source and replace it with something that is more positive. (Barroso, 1995, pp. 51-52) Many sought ways to find inner peace and used meditation, visualization, relaxation, or guided imagery. One individual said, "I do affirmations and visualizations. I know that my immune system is tied up with my stress level and psychological well-being" (Kendall, 1992, p. 31). The positive affirmation of life and self was a predominant part of focusing on the self. Study participants acknowledged a critical link between the mind and body and recognized that changes in both were required to enhance health. One participant said, My internal attitude toward the future is quite positive. I don't let myself get caught up in the numbers [I-cell count]. I try to do things for myself, like go over to the church and vocalize or sit at home and read. (Allan, 1990, p. 60)

Negotiating Health Care Negotiating health care was defined as efforts to assume an active role in care. Respondents recognized the need to be responsible for their health and not be passive observers of providers' plans and treatments. In essence, they became experts about themselves with regard to medical care (Allan, 1990; Barroso, 1995; Cherry & Smith, 1993; Gaskins & Brown, 1992; Gloersen et al., 1993; Hall, 1991; Hudson & Morris, 1994; Ragsdale et aI., 1992, 1994). Assuming an active role in health care often occurred in response to negative experiences with health care. Negative experiences induded (a) social isolation

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from the institution of medicine when patients felt as if they were viewed as a disease, not as an individual; (b) a battle metaphor acted out by providers, implying that medicine had to win against HIV, which was counter to many respondents' beliefs that they needed to live harmoniously with the virus; and (c) value judgments by providers that were dehumanizing (Cherry & Smith, 1993), As one participant said, "HN patients are just as human as you, except we have a virus. The [caregivers] feel like people with AIDS are the lowlife of society.... I do not consider myself a lowlife" (Cherry & Smith, 1993, p. 193). Another said of his health care provider, "As soon as I mentioned that I was HIV positive, this doctor literally pulls his hand off me, backed away, and said, he was sorry. ... I had trouble finding doctors who would listen to me" (Gaskins & Brown, 1992, p. 118). Participants realized the importance of seeking medical care, keeping appointments, and taking their medications, although some noted that they tailored their medications to maximize benefits and minimize side effects. In other words, they did not always take their medicines as prescribed, One woman said, "If you are taking the AZT and it's making you sick I wouldn't tell you not to take it, but to cut down on it" (Barroso, 1995, p. 51). AparticipantinGloersenetal.'s (1993) study said, "You can sit there and let the doctors try and make you better ... but unless you believe what you do makes a difference, all the medicine in the world won't matter" (p.52), Participants viewed themselves as responsible for their health and took an active role in their treatment. They sought information from a variety of sources and often initiated discussions about alternative treatments with health care providers. They valued collaboration, shared decision making, and options. One man in Hudson and Morris's (1994) study said, My case manager makes sure that I know what's out there. In fact, she is also a nurse. Without her help, I would be sicker than I am. I'm grateful that she calls me and tells me about different programs and services. (p. 42)

Another informant said, "I learned after the first hospitalization what I needed. I even brought some medication from home in case the doctor didn't prescribe it" (Ragsdale et aLI 1992, p. 42).

Dealing With Stigma Dealing with stigma involved dealing with reactions to HIV infection on personal, familiat and societal levels (Cherry & Smith, 1993; Coward, 1994; Gaskins & Brown, 1992; Hudson & Morris, 1994; Powell-Cope, 1995; Ragsdale et al., 1994; Schwartzberg, 1994; Weitz, 1990). People living with HIV attempted to protect themselves and their families from stigmatizing reactions. On a personal level, some people living with HIV felt that the label of being HIV positive engulfed their previous identities; they became their diagnoses. Some reported feeling overwhelmed by a sense of isolation and abandonment. One group of researchers labeled the seropositive person who could not cope well with stigma the loner; these people avoided social interaction and spent their days sleeping, watching television, and reading (Ragsdale et aL, 1994). Dealing with stigma was often manifested in deciding who to telL For gay men, decisions about who to tell could mean revealing their sexual orientation for the

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first time. The greatest fear in disclosure was the risk of losing the support of one's family. One man in Hudson and Morris's (1994) study said, I don't think it's necessary to tell my children and ex-wife what's going on. They know something is wrong, but they won't ask. They see that I have lost a lot of

weight. r am in the process of making a video for my sons, and they will see it after I'm gone. I'm doing it to let them know that I love them. (p. 42)

Families may not have overtly rejected the person living with HIV; however, keeping the diagnosis secret or adopting extreme anticontagion measures reinforced stigma. More covert behavior of people in the seropositive person's social network was a subtle backing away. Gay men also had to deal with a dual us-versus-them situation in which their social world was divided into people with HIV and people without HIY. One man in Weitz's (1990) study, in describing his best friend's reaction to his diagnosis, said, He couldn't get out of the apartment fast enough .... It was to the point [my friends] didn't even want to be in the same room with me .... They stopped returning calls. When I would see them out [at bars], they would see me coming and they would head out in the other direction. (p. 29) People living with HIV also reported facing rejection from their housemates, employers, and health care providers. One man said,

r always correlate this disease with cancer 50 years ago. You kept it a secret if you had cancer or there was cancer in your family. It was a shame-type thing for some reason .... It makes me extremely angry, extremely angry. (Cherry & Smith, 1993, pp. 189-190) One man, who worked as a tailor, said of his coworkers, If a pin came from [my department], they would immediately throw it away because [they thought] if they poked themselves, they could get AIDS .... [Then they developed] a list of things for me to do at the end of the day like wipe down the scissors and the table and everything that I touched with a weak solution of ten-toone [bleach] .... With all this happening, I kind of lost the desire to work. (Weitz, 1990, p. 31) One study noted that seropositive African Americans felt a profound lack of family and church support (Hudson & Morris, 1994).

CONCLUSIONS Because the research reviewed for this metasynthesis was published between the years of 1990 and 1995, and the analytic work took nearly 2 years, we decided to do a validity check with the qualitative research conducted since then on the same topic. A review of the computer databases for the years from 1996 to 1998 revealed that an additional 33 qualitative studies had been published. Note that the studies used for the validity check were not subjected to the quality checklist; they were simply examined for themes to determine if the original six metaphors were still relevant

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and valid. Of these 33 studies, one fourth (8) of them were randomly selected and reviewed for the validity check (Barroso, in press; Gielen, O'Campo, Faden, & Eke, 1997; Hackl, Somlai, Kelly, & Kalichman, 1997; Katz, 1996; Sandstrom, 1996; Siegel & Raveis, 1997; Stevens & Tighe Doerr, 1997; Wilson, Hutchinson, & Holzemer, 1997). The metaphors were still relevant and valid; there are more studies that either include women or deal with women's experiences with HIY. Issues surrounding disclosure and stigma appear to be more prominent; they were discussed in six of the eight studies. Disclosure-related violence emerged as a theme in the women's studies (Gielen et al., 1997; Stevens & Tighe Doerr, 1997). There also appears to be a greater inclusion of minority participants. For example, of the 38 patients in Wilson et al.'s (1997) study, 26 were Hispanic or African American, and all of the 93 men in Siegel and Raveis,s (1997) study were minorities. Data synthesis for this project was a dynamic and sometimes daunting undertaking as we immersed ourselves in individual studies and then regarded the body of work as a single entity. After much spirited debate, we chose the six metaphors described above. The most prominent, finding meaning in HIV I AIDS, was the metaphor with the largest amount of supporting data. It represented transcendence for these people, and it helped them to deal with HIV I AIDS on an existential level. Those who were able to find meaning were able to also experience the other metaphors described in this article. In other words, those who found meaning were able to establish human connections, focus on themselves, negotiate health care, and deal in a positive way with stigma. However, those for whom HIV had a shattered meaning did not experience these other aspects; they were stuck, unable to establish a framework for coping with HIY. Mired in hopelessness and despair, their inability to adapt positively to living with HIV prevented them from making new connections with others, becoming an active partner in their health care, and performing the self-care behaviors that would assist them to stay healthy. With regard to the other metaphors, human connectedness, which focused on initiating and sustaining meaningful relations with others, was a buffer for dealing with stigma. People living with HIV often experienced both of these but on different levels. They might have close ties to family and friends, but they might have to deal with stigma in the workplace. Often, the people in their social network had to be protected against stigma. Focusing on the self represented self-care behaviors, both physical and mental! emotional, that participants performed to help them stay healthy. Negotiating health care involved dealing with others rather than with the self. However, they both represented a commitment to staying healthy. There was also an element of empowerment in both of these metaphors and a sense of selfworth that prevailed even when this meant rejecting the advice of health care providers. This study provides a synthesis of current qualitative work on living with HIV infection. More qualitative studies of the broad experience of adults with HIV in the United States are probably not warranted at this time. The six metaphors developed in this metasynthesis are well represented in the research literature. Focused qualitative studies on particular aspects of living with HIV infection or on certain subpopulat!ons may be warranted. In addition, because the studies reviewed were cross-sectional, longitudinal studies could add significantly to this body of knowledge. Findings from this metasynthesis reinforce the need to implement holistic models of care that address the psychosocial, spiritual, and physical dimensions of

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living with HIV infection. Interdisciplinary models should include recipients of care as full members of the team alongside professional care providers, allowing clients to have input into their health care and ensuring that their voices are heard with regard to treatment decisions. An interdisciplinary model would provide assistance for the wide range of needs of persons living with HIY, such as nutrition counseling, spiritual care, psychological services, and coordination of health care services. No single health care provider is sufficient to meet the diverse and complex needs of this group of patients. This metasynthesis reveals the consequences of negative adaptation, or shattered meaning. Health care providers should not only be aware of this but they should also aggressively attempt to identify patients who do not cope well with having HIV disease, intervene earlier, and encourage a more positive adaptation. There is a clear need for well-integrated psychological and/ or psychiatric services. The primary care provider may not have the time or the expertise to explore adequately the psychosocial consequences of HIV infection with the patient, so these services are critical.

REFERENCES Allan, J. D. (1990). Focusing on living, not dying: A naturalistic study of self-care among seropositive gay men. Holistic Nursing Practice, 4(2), 56-63. Barroso, J. (1995). Self-care activities of long-term survivors of acquired immunodeficiency syndrome. Holistic Nursing Practice, 10(1),44-53. Barroso, J. (in press). Long-term non-progressors with HIV disease. Nursing Research. Bums, N. (1989). Standards for qualitative research. Nursing Science Quarterly, 2, 44-52. Cherry, K, & Smith, D. H. (1993). Sometimes I cry: The experience ofloneliness for men with AIDS. Health Communication, 5(3),181-208. Cohen, M. Z., & KnafI, K A. (1993). Evaluating qualitative research. In P. L. Munhall & c. O. Boyd (Eds.), Nursing research: A qualitative perspective (pp. 476-492). New York: NLN Press. Coward, D. D. (1994). Meaning and purpose in the lives of persons with AIDS. Public Health Nursing, 11, 331-336. Estabrooks, C. A., Field, P. A., & Morse, J. M. (1994). Aggregating qualitative findings: An approach to theory development. Qualitative Health Research, 4, 503-511. Gaskins, S., & Brown, K. (1992). Psychosocial responses among individuals with human immunodeficiency virus infection. Applied Nursing Research, 5(3),111-121. Gielen, A. c., O'Campo, P., Faden, R. R., & Eke, A. (1997). Women's disclosure of HIV status: Experiences of mistreatment and violence in an urban setting. Women and Health, 25(3), 19-31. Gloersen, B., Kendall, L Gray, P., McConnell, S., Turner, J" & Lewkowicz, J. W. (1993). The phenomena of doing well in people with AIDS. Western Journal of Nursing Research, 15(1),44-58. Hackl, K L., Somlai, A. M., Kelly, J. A., & Kalichman, S. C. (1997). Women living with HIV / AIDS: The dual challenge of being a patient and caregiver. Health and Social Work, 22(1), 53-62. Hall, B. A. (1991). Help-seeking among HIV-seropositive gay men. In M. Tallmer, C. Clason, R. Lampke, A. Kutschen, E. Brown, & F. Seider (Eds.), HIV positive: Perspectives on counseling (pp. 161-173). Philadelphia: Charles Press. Hall, B. A. (1994). Ways of maintaining hope in HIV disease. Research in Nursing & Health, 17,283-293. Hudson, A. L., & Morris, R. L. (1994). Perceptions of social support of African Americans with acquired immunodeficiency syndrome. Journal of the National Black Nurses Association, 7(1), 36-49. Jensen, L. A., & Alien, M. N. (1994). A synthesis of qualitative research on wellness-illness. Qualitative Health Research, 4, 349-369. Katz, A. (1996). Gaining a new perspective on life as a result of HIV infection. Journal of the Associatioll of Nurses in AIDS Care, 7(4), 51-60. Kendall, J. (1992). Promoting wellness in HIV-support groups. Journal of the Assoriatimt afNurses in AIDS Care, 3(1), 28-38.

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Kendall, J. (1994). Wellness spirituality in homosexual men with HIV infection. fournal of the Association of Nurses in AIDS Care, 5(4), 28-34. Lamendola, F. P, & Newman, M. A. (1994). The paradox of HIV I AIDS as expanding consciousness. Advances in Nursing Science, 16(3), 13-2l. McCain, N. L., & Gramling, L. F. (1992). Living with dying: Coping with HIV disease. Issues in Menial Health Nursing, 13,271-284. Noblit, G. W, & Hare, R. D. (1988). Meta-ethnography: Synthesizing qualitative studies. Newbury Park, CA: Sage. Powell-Cope, G. M. (1995). The experiences of gay couples affected by HIV infection. Qualitatil'e Health Research, 5(1),36-62. Ragsdale, D., Kotarba, J. A., & Morrow, J. R. (1992). Work-related activities to improve quality of life in HIV disease. Journal of the Association of Nurses in AIDS Care, 3(1), 3944. Ragsdale, D., Kotarba, J. A., & Morrow, J. R. (1994). How HIV positive persons manage everyday life in the hospital and at home. Qualitative Health Research, 4(4),431443. Sandstrom, K. L. (1996). Searching forinforrnation, understanding, and self-value: The utilization of support group by gay men with HIV / AIDS. Social Work in Health Care, 23(4), 51-74. Schaefer, S., & Coleman, E. (1992). Shifts in meaning, purpose, and values following a diagnosis of human immunodeficiency virus (HIV) infection among gay men. Journal of Psychology and Human Sexuality, 5(1-2),13-29. Schwartzberg, S. S. (1993). Struggling for meaning: How HlV positive gay men make sense of AIDS. Professional Psychology: Research and Practice, 24(4),483-490. Schwartzberg, S. S. (1994). Vitality and growth In HIV-infected gay men. Social Science and Medicine, 38, 593-602. Siegel, K., & Raveis, V. (1997). Perceptions of access to HIV-re la ted informa tion, care, and services among infected minority men. Qualitative Health Research, 7(1),9-31. Stevens, P. E., & Tighe Doerr, B. (1997). Trauma of discovery: Women's narratives of being informed they are HIV-infected. AIDS Care, 9,523-538. Weitz, R. (1989). Uncertainty and the lives of persons with AIDS. faumal of Health and Social Behavior, 30, 270-281. Weitz, R (1990). Living with the stigma of AIDS. Qualitative Sociology, 13(1),23-38. Wilson, H. S., Hutchinson, S. A., & Holzemer, W L (1997). Salvaging quality of life in ethnically diverse patients with advanced-HIV / AIDS. Qualitative Health Research, 7(1),75-97.

lillie Barroso, A.N.P., PhD., CS., is an assistant professor in the Department of Adult and Geriatric Health at the University of North Carolina at Chapel Hill School of Nursing. Gail M. Powell-Cope, A.KN.P., PhD., is the associate director of VSIN 8 Evidellce-based Practice Center at the James A. Haley Veterans' Hospital.