Original Articles Psychosocial Responses Among Individuals With Human Immunodeficency Virus Infection Susan Gaskins and Kathleen Brown

The purpose of this research was to identify and describe psychosocial responses to being infected with human immunodeficiency virus (HIV). Ten adults infected with HIV were interviewed and audiotaped as they described their feelings and experiences as HIV-infected people. The interviews were analyzed using a grounded theory methodology. The core category that emerged from the data was Fighting to Survive with HIV Infection. Supporting concepts were Taking Care and Restructuring One's Life. The concept of Taking Care included processes of everyday work and illness work. The processes involved in Re'structuring One's Life were living with uncertainty, accepting homosexuality, experiencing changing feelings, protecting confidentiality, dealing with the medical profession, handling multiple losses, and living with a terminal illness. Copyright © 1992 by W.B. Saunders Company

INCE THE EARLY 1980s, human immunodeficiency virus (HIV) disease and acquired immunodeficiency syndrome (AIDS) have become major intemational medical and social problems. Although knowledge has been generated and validated on the causative agent, the epidemiology, the pathogenesis, and the treatment of persons with AIDS (Larson, 1988; Larson & Ropka, 1991), there has been limited investigation on psychosocial responses to HIV. Just as the biological responses to HIV are varied, so are the psychosocial responses (Center for Disease Control, 1987). The nature of HIV disease accounts for the variety of psychosocial responses (Center for Disease Control, 1987; Flaskerud, 1987; Friedlander & Arthur 1988; Morin, 1988; Morin, Charles, & Maylon, 1984; Nichols, 1985). For example, most people infected are in stigmatized minorities and are young, with the majority being in their thirties (Center for Disease Control, 1991, 1992). Uncertainty regarding the progression of the disease and feelings that accompany a life-threatening disease, such as fear, anxiety, and anger, also may be exhibited. In addition, people with HIV infection are vulnerable to feelings of

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guilt, self-hatred, and rejection. Fear and insensitivity by friends, family, coworkers, and even health professionals also contribute to their vulnerability. Researchers have found that individuals infected with HIV experience various psychosocial responses in adaptations or lifestyle changes made in relation to having HIV/AIDS (Derdiarian & Schobel, 1990; Korniewicz, O'Brien, & Larson, 1990; Longo, Spross, & Locke, 1990; Ragsdale & Morrow, 1990). Nichols (1985) provided anecFrom Capstone College of Nursing, University of Alabama, Tuscaloosa, AL; and the School of Nursing, University of Alabama at Birmingham, AL. Susan Gaskins, DSN, RN: Assistant Professor, Capstone College of Nursing, University of Alabama, Tuscaloosa, AL; Kathleen Brown, PhD, RN: Professor, School of Nursing, University of Alabama at Birmingham, AL. This study was partially fimded by a Post-Baccalaureate Faculty Fellowship from the Department of Health and Human Services. Address reprint requests to Susan Gaskins, DSN, RN, Assistant Professor, Capstone College of NurMng, University of Alabama, P.O. Box 870358, Tuscaloosa, AL 35487-0358. Copyright © 1992 by W.B. Saunders Company 0897-189719210503-000255.00/0

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dotal reports of psychosocial reactions of persons with AIDS from his personal experience in caring for several hundred patients. He found that there was an initial crisis response in a person with AIDS. The emotional reactions described by Kubler-Ross (1969) in a dying patient were common at this time. The diagnosis of HIV may result in the same psychological liabilities as any lifethreatening illness (Tross & Hirsch, 1988). Forstein (1984) wrote about a reaction to having AIDS process with an initial stage of shock, numbness, and disbelief and urged crisis intervention for 2 months after diagnosis. Mandel (t986) studied a sample of homosexual men and found that during a 2-month period following diagnosis, distress, anxiety, depression, and issues regarding selfdisclosure were common. Many subjects had not discussed their problems with family members or coworkers primarily because they had not disclosed their homosexuality. Those subjects who were more hopeful showed life changes such as changes in diet, exercise, and stress reduction. Derdiarian and Schobel (1990) noted that HIV disease is different from other life-threatening diseases because of the progression of the disease, the stigma attached to it, the lack of treatment, and absence of cure. Because limited research has been conducted on psychosocial responses to HIV disease, significant gaps in what the responses are, when and why they occur, and who experiences them remain in our understanding of the psychological responses to having HIV infection. Much of the literature on psychosocial response is anecdotal rather than research-based. Grounded theory methodology is recognized as a research stategy to address gaps in information and to gain understanding from the subject's point of view. Because of the need for nurses and health professionals to better understand the psychosocial responses of persons infected with HIV, the purpose of this research was to identify and describe psychosocial responses to the diagnosis as reported by persons infected with HIV. METHOD

A form of qualitative research, grounded theory, was used in subject selection, data collection, and analysis for the study. Rather than being a specific method or technique, Strauss (1987) referred to grounded theory methodology as a style of doing

qualitative research that includes theoretical sampiing, constant comparisons, and use of a coding paradigm. The purpose of using grounded theory methodology is to discover categories and properties of a phenomenon which emerge from the subjects' reports and describe these data in detail. The theory that emerges is "grounded" in the subjects' data. Theoretical sampling was the approach used in selecting the participants. In grounded theory, the researcher proceeds to sample until the data obtained are rich, meaningful, and accurately reflect participanis' experiences. Participants who had been diagnosed with HIV infection and therefore who would be able to relate their responses to being diagnosed were selected. From these interviews the researcher could identify theoretical categories of how HIV-infected persons respond to their diagnosis (Glaser & Strauss, 1967). The initial decision about data collection was based on the research area, not on a preconceived theoretical framework. The review of the literature suggested that psychological responses occur in the months following diagnosis (Friedlander & Arthur, 1988; Nichols, 1985). Therefore, the researcher initially sought people who had known for at least 3 months that they were infected with HIV. Participants aided the researcher in finding other participants who met the criteria for inclusion in the study. Most of the participants would say, "I know someone else you should talk to." Further data collection was guided by gaps and questions in the emerging theory. Sampling continued until participants' responses became redundant, thus theoretical saturation of categories was achieved (Glaser & Strauss, 1967). The information, codes, and categories became repetitious after 7 interviews, although 10 interviews were conducted to confirm saturation. SAMPLE

The sample consisted of 10 people who were infected with HIV in the southeastern United States. Participants are classified by age, race, and gender in Table 1. The participants met the following criteria: they were 18 years of age or older, reported having tested positive for HIV antibodies, and could speak English as their first language. At the time of the interview, three of the participants were asymptomatic, three were classified as having an AIDS-

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Table 1. Classification of Subjects by Age, Race, and Gender Black

Age

White

(years)

Male

Female

Male

Female

20 to 29 30 to 39 40 to 49

2 0 0

0 1 0

3 2 2

0 0 0

related complex (ARC), and four were classified as having AIDS. Six of the participants had chronic conditions, and four were asymptomatic. The length of time that they had known about their diagnosis varied from 4 months to 5 years. Six of the participants had sought testing for HIV and four had found out their diagnosis either from the Red Cross or during a diagnostic work-up. At the time of diagnosis with HIV infection, seven participants had been asymptomatie, and three had been showing symptoms. AIDS was diagnosed immediately in only one participant. Six of the participants were not working and were on disability, whereas four continued to work full-time. Of the four participants who worked, three were asymptomatic and AIDS was diagnosed in one. DATA COLLECTION

The data were gathered by audiotaped in-depth interviews to allow the researcher to "enter another person's world; to understand that person's perspective" (Wilson, 1987, p. 109). Interviewing is a method of investigation to learn about feelings and thoughts or the way people organize the world and the meanings attached to what goes on in the world. Interviews require asking open-ended questions, listening and recording answers, and then further questioning. After consent was obtained, the participants were asked questions about their lives since their diagnosis of being HIV positive. An interview guide was used to ensure consistency across interviews (Table 2). DATA ANALYSIS

The constant comparative method of joint coding and analysis was used to analyze the data (Glaser & Strauss, 1967). There is ongoing data collection, coding, and analysis in this type of research. Glaser and Strauss (1967) identified four stages in the constant comparison method: "(1)

Table 2. Interview Guide When did you know that you were infected with HIV? How did you feel when you were told the results of your test? How would you say that being infected with HIV has affected your life? What have been your experiences since you have known your diagnosis? How have you felt about these experiences? How do you feel about the diagnosis now? How has being infected with HIV affected your relationships with significant others in your life?

comparing incidents applicable to each category; (2) integrating categories and their properties; (3) determining the theory; and (4) writing the theory" (p. 105). Although the stages were progressive, each stage was operational until analysis was terminated. Categories were identified from words or phrases that captured the meaning of each incident in the written transcript of the interview. Comparing incidents applicable to each category began when the researcher coded each incident in the data into as many categories as possible (Strauss, 1987). These constant comparisons were used in identifying categories and their relationships. Chenitz and Swanson (1986) stated that categories were the major unit of analysis in grounded theory. A central or core category, Fighting to Survive, emerged late in the analysis and was the main theme around which other categories evolved. Coding the data into the categories was the major task of the researcher. Then, the categories were defined, developed, and integrated. RESULTS

Participants were asked to describe how they felt when they first learned they were infected. Regardless of the participants' health status at the time of testing, their initial responses to the diagnosis included (a) facing the reality of death, (b) deciding who to tell, and (c) changing lifestyles. INITIAL RESPONSES

Facing the Reality of Death The majority viewed the diagnosis as a death sentence. Typical statements included, "It was an instant death sentence. The first thing that came to my mind was 'How soon am I going to die'?"

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" . . . I thought I was going to die right then. I didn't know there were different phases that you go through and that you might not even go through them." The majority of the participants spoke of making preparations to die immediately. There was a sense that their lives were over or would be over very shortly. Shock was reported by most of the participants when initially told their diagnosis. One of the participants remembered being unable to respond when he was given his results. He commented: • . . it was like his lips were moving and I did not hear him. I thought someone had taken a sledge h a m m e r and hit me in the chest. I mean I just caved in. I sat there very stoically and I think I started to shake a little.

Anger was expressed by two participants who learned their diagnosis during a hospitalization for substance abuse. One stated: When I first found out, I was mad at everybody. I hated everything and everybody . . . . I wanted to infect everyone, but that's over. It didn't last long. It was a w h y me a t t i t u d e - - i f I got it, I ' m not going out by myself.

Most of the participants considered suicide either immediately or within weeks after learning they were infected with HIV. As the meaning of the diagnosis, the disease process, the social repercussion, and the probabl e death were considered, suicide was viewed as preferable and as an escape. When confronted with a long, painful, and terminal illness, some individuals were so terrified that they desired to be out of the present as well as the future. There was a fear of the future and one's ability to cope. As one participant stated, "The question was, Do I die from this terrible disease that killed Rock Hudson, or do I go ahead and kill myself?. That was my immediate thought." After the initial response to the diagnosis passed, as the participant's lives continued, there were recurrent considerations of suicide. The reasons for considering suicide reflected individual values and strengths. For some, the thoughts would recur in relation to physical symptoms of the disease. The symptoms were like an omen of things to come. These findings were consistent with a 1985 study conducted in New York City which found that the risk of suicide for men aged 20 to 59 years old was 36.3 times greater in men with a diagnosis o f AIDS than in men without the diagnosis

(Marzirk et al., 1988). The risk was 55.15 times greater than the risk for the general population.

Changing Lifestyles The majority of the participants spoke of changing their behaviors immediately after learning their diagnosis in order to enhance their chances of survival. High-risk behaviors were stopped and changes were made in habits and activities of daily living. One participant stated, "After I found out, I quit drugs. I quit drinking. I quit doing cocaine. When I found out, I said I can do some things that will help' me and make me live longer."

Deciding Who to Tell After learning of being infected with HIV, all of the participants reported that they had to decide who to tell about the diagnosis. Decision-making involved identifying which people they were close to who could be trusted and who would be supportive. For all the male subjects, revealing the diagnosis would result in others knowing about their homosexuality. Initially, they thought about who they wanted to tell rather than who they had to tell, with the exception of one participant who was married. The married participant realized that the spouse needed to be told and tested. Family, friends, doctors, and ministers were the people chosen to tell when the diagnosis was disclosed. FIGHTING TO SURVIVE WITH HIV INFECTION

Although all of the participants had considered their diagnosis of being infected with HIV as a death sentence, their perspectives changed from ' i m dying" to " I ' m living" after diagnosis. The core concept described by the individuals infected with HIV was Fighting to Survive or how they have fought for their lives since the diagnosis. The participants related how their focus changed over several months from dying with HIV infection to living with HIV infection and how they managed their lives in relation to being infected. As one subject exclaimed, "At first I thought I was going to die the next day, but that's not true. I'm going to live and enjoy it and make the best of it." Most of the participants qualified that surviving was specifically their fight to survive. One participant stated, "It is fighting to survive as long as you can. Just surviving day by day you don't really go out knowing now that I have H I V - - I just got to get out there. It's like a work force, you got to do this,

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you got to do this•" Two of the participants compared having HIV infections to being at war. One participant recalled telling his mother • . . I have never been to war. I think people bring out their best in a crisis situation and [ never had that opportunity. I couldn't go to Vietnam. And, I thought this is something like a war, and it is an opportunity to really change your l i f e - - t o turn things around.

Diagnosis of HIV Infection

$ Initial Response 1• Facing the reality of death 2• Deciding who to tell 3. Changing one's lifestyle

$

The other participant referred to the "battles" to be fought in the HIV infection war: It is a battle-a battle within a battle against the o d d s . . . each individual is struggling in their own battle against this and the whole spectrum is the war and who is going to win • . . you may win this battle over Pneumocystis carinii pneumonia (PCP) or whatever, but the war has not been

Core Category Fighting to Survive With HIV Infection Supporting Concepts

Strategies

won.

As a result of the diagnosis of being infected with HIV and subsequently knowing that they had a life-threatening; stigmatizing, chronic illness, participants developed and searched for strategies to minimize the problems associated with the disease and to enhance their health and thereby hopefully lengthen their lives. Some of the activities were psychologically comforting to participants. Concomitantly, participants reported adjustments and responses in their lives that were related to or resulted from their diagnosis. An overview of the process of Fighting to Survive with HIV infection is presented in Figure 1. SUPPORTING CONCEPTS OF FIGHTING TO SURVIVE Taking Care

All participants spoke of taking care of themselves or ways they had changed habits and lifestyles since their diagnosis of HIV. Concurrently, most of them incorporated activities involved with having a chronic disease, such as taking medications, into their everyday life. One participant stated You get a disease. You take care of yourself and maybe you'll make it, maybe not. But, if you take care of yourself, then the rest of it is not on y o u . . . When I found out about my problem, l said, "Well I can do this, this, this, and this, and I did i t . "

The extent of taking care and the changes mandated in their lives depended on their previous lifestyles and their physical health• The two aspects of

1. Taking care

1.1 Everyday work 1.2 Illness work

2• Restructuring one's life

2.1 Dealing with uncertainty 2.2 Accepting homosexuality 2.3 Experiencing changing feelings 2.4 Protecting confidentiality 2.5 Dealing with health professionals 2.6 Handling multiple losses 2.7 Living with a terminal illness

Figure 1. Psychosocial responses described by individuals with HIV/AIDS.

taking care, everyday work and illness work, were similar to lines of work identified by Corbin and Strauss (1985) in managing chronic illness.

Everyday Work Everyday work refers to activities of daily living on which the participants changed or focused to help them cope with the disease, feel better, and hopefully increase their chances of survival. Areas typically mentioned were nutrition, rest, stopping substance abuse, and decreasing stress. One participant stated I don't take drugs, I don't drink, and I don't smoke. I believe that's helped me a lot. I used to smoke but not regularly. Now, if I take my medications and do like the doctors tell me, I think I'll live.

Illness Work Illness work was identified by reference to activities performed specifically in response to the

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illness, such as seeking medical care, keeping appointments, and taking medications. Most of the participants were on numerous medications and had elaborate schedules and methods of keeping up with their regimens. If they went out, they had special bags in which to carry their medications. All but two of the participants saw their physicians on a regular basis, usually every 2 weeks. One went to Maryland every 2 weeks as he was involved in a study at the National Institutes of Health. One participant stated " I wanted anything that had any hope. I was taking vitamins. I read and took massive doses o f vitamins at one s t a g e . . . " Although initially they sought help through the traditional health care system, they were open to and often sought other forms of treatment. Several participants referred to use of medication and one had been to a metaphysical healer. Two of the participants stopped taking care, both the everyday work and the illness work. One of the participants was having trouble getting his ziduvudine [formerly azidothymidine (AZT)] and was feeling good. His care was not coordinated as he had three different doctors. He died 3 months after the interview. The other participant who stopped taking care referred to being overwhelmed with the activities. He was still smoking and he commented that taking care of himself was difficult, expensive, and time-consuming.

Restructuring One's Life Another type of work referred to by Corbin and Strauss (1985) was biographical work or the continuing or occasional restructuring of one's life in relation to the illness. All of the participants talked about how being infected with HIV had changed their lives. Seven categories emerged in relation to adjustments the participants had made in their lives because they were infected with HIV: (a) living with uncertainty, (b) accepting homosexuality, (c) experiencing changing feelings, (d) protecting confidentiality, (e) dealing with the health care professions, (f) handling multiple losses, and (g) living with terminal illness.

Living With Uncertainty All of the participants talked about not knowing what to expect in their lives as a result of being infected with HIV. It was impossible for them to determine if and when they would get sick, what infections or disease they would contract, when

they would die, what people's reactions toward them would be, and for some, how long they had been infected. As one participant stated: I could be OK now and die this evening cause you don't know when you are going to die with this. I probably had it 3 or 4 years ago and now I ' m getting all these symptoms. This could be the end for me. The main thing that scares me is I don't know how long I've had it. I could have had it 3 or 4 years because that's when I was shooting up. I don't know. I could be gone tomorrow.

Morin et al. (1984) referred to people who were HIV pos!tive but did not have AIDS as being in the "gray zone." During interviews, these individuals in the gray zone showed signs of great psychological distress, such as anxiety, fatigue, and loss of initiative, because of the persistent uncertainty regarding how their condition would change. Tross and Hirsch (1988) found a greater amount of distress in individuals who were asymptomatic or were diagnosed as having ARC than in individuals with AIDS diagnosed. Regardless of their stage in the disease process, the participants expressed concern about their current or previous uncertainties.

Accepting Homosexuality Although not all of the participants believed they had contracted HIV from a homosexual experience, all the males were self-reported homosexuals or bisexuals and disclosed their sexual preferences to the investigator without hesitation. Most of the participants recalled struggling with accepting their homosexuality and related that the diagnosis of HIV infection involved acceptance of their homosexuality. A typical reference about being homosexual was as follows: I don't have nothing to hide. I always had a problem accepting that I was gay because I always fought it. I finally realized that that is just the way I was . . . . I had come out about being gay to the gay society, but not to the straight society, l had been out for awhile to the people I know were straight. But, now I have. It has been unbelievable to me that all the straight people accept me the way I am and who I am.

Frierson and Lippmann (1987) wrote about their experiences in providing psychiatric care for persons with AIDS over a period of 4 years. They stated that AIDS and homosexuality have become synonymous in the public's minds because of the high incidence of AIDS among homosexuals. The routes of transmission of HIV make it necessary

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for health care providers to consider a person's lifestyle and how the virus was contracted.

Experiencing Changing Feelings Subjects expressed a full gamut of feelings. Some feelings were reported as having changed over time, but many feelings were recurrent. Negative as well as positive feelings such as depression, loneliness, anger, frustration, and boredom were expressed. One participant stated: " I have felt hatred, pain, frustration, joy, happiness, and love." Negative feelings were more predominant than positive ones. One participant stated For a year and a half, all my feelings were negative. For 5 months, I had no work, money, no food. You know, it was beg, bum, borrow, steal. But, it has been steadily getting better since. I got my retroactive check from social security income (SSI) and it was over $1,500.

Some of the participants identified positive feelings that resulted from learning their diagnosis. The most common positive feelings reported was that the diagnosis enabled them to change their lifestyle and to have a new perspective on life. Changing their lifestyle meant changing the behaviors that put them at risk of becoming infected. One participant talked about a new perspective on life as follows: I have become a nice p e r s o n . . . I have accepted it and l might as well accept it and work with what I've got. Now when the sun shines it looks good to me. The leaves look good to me. Anything that's growing and moving. It looks good to me now. It used to not matter because I was in a gray world on drugs . . . . Knowing this, now the holidays mean a lot more . . . . I have tried to get closer to my family members.

Many authors have written about the various feelings experienced by persons with AIDS (Frierson & Lippmann, 1987; Holland & Tross, 1985; Nichols, 1985, 1987). These authors report that the feelings change over time as new adjustments are made or new crises are dealt with as the disease progresses. Nichols (1987) and Mandel (1986) reported observing positive reactions to AIDS. When persons with AIDS accepted their illness and the fact that their time was limited, and were able to function, they formed a new identity. The persons with AIDS realized they were still alive, formed meaningful goals, and got on with their lives. However, all of the authors reported encountering more negative than positive feelings.

Protecting Confidentiality The participants were concerned with protecting or controlling who knew about their diagnosis. As time evolved, the participants became more willing to tell people about their diagnosis. Three of the participants who had known for 1V2 years or more were totally open and one referred to himself as "unconfidential." All three were chronically ill and were on disability. Two of these three participants had "'gone public" about their condition. Although they felt that it was important for persons with AIDS to come forward and speak up about the disease, they both feared possible repercussions such as being evicted or having their house burned. Overall, the reactions to these participants had been positive and they had received love and support from others and their families in particular. For the other participants, the fear of telling other people remained, and they continued to struggle with the decision about whom to tell and when to tell them. They spoke of slowly increasing the number of people they told about their diagnosis. One participant stated " I didn't start telling people until about a year ago. I had told my parents and closest friends. I finally started confiding in friends. Of course, I had to tell the people I had dated." There was a continual consideration of who needed to know among the participants. Most of them reached the conclusion that very few people really needed to know. This feeling was evident in the following statement: . . . . it's nobody's business what my diagnosis is unless I plan on going to bed with them or putting them in some danger . . . . I don't want nobody to know. I keep thinking even if someone knew, it is none of their business number one and number two is why should they bother me. They fear if you're in the same room with somebody and somebody coughs and suddenly everybody is infected. You and I know that is r i d i c u l o u s . . .

Pollack, Gharakhanian, Rozenbaum, Viallefont, and Aime (1987) found concerns among HIV-infected subjects (N = 104) about who to tell. Subjects in their study who were married or gay and living in a couple relationship spoke about their illness only with one closest person. Thirty percent of the patients with AIDS or ARC and 50% of the patients who had lymphadenopathy or were asymptomatic spoke with no one about their illness.

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Dealing With Health Professionals All of the participants described contacts with health professionals in relation to their diagnosis. Most of the participants had had negative as well as positive experiences with health professionals. Negative reactions from health workers were ignorance, lack of interest, what was perceived as inadequate care, rejection, problems getting medications, and what appeared to be fear of contagion. Statements about those reactions from physicians and other health care workers included: As soon as I mention 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. One doctor would give me nothing for pain. I was in so much pain that I would literally lay in the bed and scream. The pain was in m y back. My arms and legs would not move. I was dehydrated and malnourished and the doctor kept telling me to take aspirin. I was dying.

Most of the participants, even the ones who had had negative experiences, had found a physician or medical facility for treatment and were pleased with their care at the time of the interview. Most of the subjects had seen more than one physician. Several of the participants were driving 50 miles for their care but felt it was worthwhile. However, one was concerned about the lack of emergency care for persons with AIDS in his town. No complaints were voiced about hospitalization experiences. Two of the participants were pleased with their physical care but recognized an absence of psychological care. One subject stated "When I saw the doctor, I was in good shape physically, but he did not realize that emotionally I was a wreck." The attitude and ability of health care providers to offer emotional comfort have been recognized as critical factors in the quality of care given to persons with AIDS (Frierson & Lippmann, 1987; Holland & Tross, 1985).

Handling Multiple Losses Participants described a wide range of losses as a result of having AIDS/HIV infection, from material possessions to the love of people. Three of the participants had had to change their living arrangements and one actually lost a house he was buying. Problems with housing were related to the loss of job and an inability to pay or being ill and unable to live alone. None of the participants lost

their housing just because of having AIDS/HIV infection. A major loss in more than half of the participants' lives was their jobs and careers. Again, the jobs were lost because of inability to work rather than discrimination because of being infected with AIDS/HIV. All of these participants had been hospitalized and ill for extended periods of time or were just too sick to work. They were either receiving or had applied for disability payments. Some of them spoke of losing their lovers, and indeed, their sexuality. Several thought their diagnosis had ended previous relationships and three of the participants had become totally celibate. Not only was there a fear of infecting someone else, but also the feeling of being undesirable because of their positive HIV status. One participant stated 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? . . . . You don't just go out and meet somebody and have anonymous sex even though I had done that in the past.

The participants who had friends with AIDS/ HIV infection talked about losing them because of death. The better they knew the person with AIDS who died, the more it bothered them. One participant stated I no longer associate with persons with AIDS. I think it is wonderful and very important, but the group was dropping like flies and I couldn't stand i t - - i n a period of 3 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 real stressfull. I just separated myself from that completely.

Many of the participants spoke of losing their future. One participant stated " I have lost my idealism-the feeling that you can really do something with your life . . . . I have no plans for the future because I don't plan on having a future." One participant expressed sorrow that at age 31, he had not fulfilled his dreams in life. He had not become what he had hoped or been able to travel and stated " I haven't enjoyed life at all." Multiple losses have been recognized by health care providers who have cared for persons with AIDS (Nichols, 1985; Morin & Batchelor, 1984).

Living With a Terminal Illness Subjects reported that the perspective of the diagnosis of HIV as a death sentence persisted but

PSYCHOLOGICAL RESPONSES TO HIV

the immediacy of it changed. There was more of an acceptance that they will probably die from this disease, that they will not live to be old, but some time is left. The majority of the participants focused on making the best of whatever time they had. Some of the participants struggled over the knowledge that they had a terminal disease and their determination to " b e a t " it. One participant stated I ' m going to die. More than likely I will not see 40 if it all goes the way it should. I've known for 2 years and I could have been positive longer than that . . . . The time limit on us is 10 to 12 years and 12 years from now, you're going to call me up and say " H i , how are you?" Because I am going to beat the socks off this one way or the other. In the back of my mind, I know that I may not. But, everyday is going to be good. Everyday is going to be the best it can be

.

.

.

Kubler-Ross (1969) stated the main psychological task of coping with a terminal diagnosis is adapting to death and dying. Tross and Hirsch (1988) referred to this adaptation as being a variation of "anticipatory grief reaction" which has been described in family members of dying patients. All of the participants spoke about the importance of spiritual comfort in dealing with a terminal illness and referred to God or a supreme being after life, or the meaning of life, or reading the Bible. Belcher, Dettmore, and Holzemer (1989) interviewed 35 persons with AIDS about their spirituality and found that their subjects experienced an alteration in their spiritual perspectives since the onset of AIDS. The respondents viewed their diagnosis as positively enhancing their spirituality. Carson, Soeken, Shanty, and Terry (1990) found persons with AIDS to be spiritually well and hopeful. DISCUSSION

Psychosocial responses to being infected with HIV included a dramatic initial response or first stage in which participants tried to make decisions about whether to commit suicide, who to tell, and changes that were needed in their lifestyles. Health professionals should note that upon learning of the diagnosis, HIV-infected persons sensed that their lives had ended. Crisis interventions and regularly scheduled counseling may help these individuals cope with intense reactions to a diagnosis of a po-

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tentially terminal illness. As the individual experiences the initial feelings regarding diagnosis, every effort including telephone calls should be made to ensure follow-up and return to clinic appointments to provide counseling for these persons. After the initial response to the diagnosis of being infected, individuals found that their lives continued with changes mandated by the knowledge of the disease or by the disease itself. This constituted the second stage in which decisions were made regarding how to fight to survive with the disease. The core category of Fighting to Survive with HIV Infection described how subjects viewed their lives after the ~diagnosis. It is important for nurses and others involved in caring for individuals infected with HIV to communicate to HIV persons that they understand that there is a difference in dying with HIV infection and fighting to survive with it. The experience is not all negative. Once HIV-infected persons accept their diagnosis, if they are still able to function, many will undergo changes and have a positive approach to life. Nichols (1987) stated the importance of professionals acknowledging this reaction to prevent the professionals from being overly pessimistic and realistic. Discussing in counseling sessions the concept of Fighting to Survive With HIV Infection with individuals who are infected would be a form of support and guidance to help them manage their lives. Nichols (1985) stated that the health care community was only concerned with the prevalence, cause, and treatment of HIV infection, whereas the emotional and the social impact were barely noticed. The participants in this study also found that to be true. The concept of Fighting to Survive With HIV Infection is multidimensional and illustrates that being infected with HIV encompasses much more than just having a physical disease. Nurses must help persons with HIV to seek and demand more than physical care from the health care community. Nurses can assist these individuals as they take charge of their own health. As noted in the findings, health professionals need to learn not only how to care for people infected, but also to understand the wide array of psychosocial implications of the disease. Workshops and conferences in the practice area can provide the knowledge necessary for them to provide care. Hospitals have provided programs that address contagion control; however, the issue of social prejudice also must be addressed (Nichols,

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1987). Peters and Connell (1991) developed an AIDS workshop which gives participants an opportunity to examine their feelings and attitudes about providing care for persons with HIV. It is important for all health care professionals to personally question their prejudices and fears if compassionate, nonjudgmental care is to be provided to these individuals. The research method used in this study has implications for nursing practice. Guided interviews by the nurse can help people infected with HIV communicate their experience, gain a clear perception of the situation, receive individual guidance, and increase the realm of people they feel they can talk to. All but one of the participants related that they enjoyed the interview and found it helpful to talk about their experiences, feelings, and reactions. Most often it was because they felt they had only a few people they could talk to about having the disease and share their thoughts and feelings about it. The participant who was most concerned about his confidentiality, and had not even told his

family that he was infected with HIV/AIDS, found the interview to be painful. However, he found comfort in knowing that his thoughts and feelings were common to other persons with AIDS. As confidentiality is a major concern for HIVinfected individuals, it must be respected and protected by nurses. Reisman (1988) stated that confidentiality of patient information has always been a standard of ethical nursing conduct and a patient's fight. The participants in this study were quite concerned about their confidentiality and were fearful of it being violated. Fighting to Survive With HIV Infection is a concept that can contribute to the nursing knowledge base for theory development and further research. Because the participants in this study had known of their diagnosis from between 4 months and 5 years, their experiences may give a limited view of the concept of Fighting to Survive. An expanded longitudinal study examining individuals from the time of diagnosis over several years would assist in validating the concept.

REFERENCES

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Frierson, R.L., & Lippmann, S.B. (1987). Psychologic implications of AIDS. AmericanFamilyPhysician, 35(3), 109-116. Glaser, B.G., & Strauss, A.L. (1967). The discovery of grounded theory: Strategiesfor qualitative research. Chicago, IL: Aldine. Holland, J.C., & Tross, S. (1985). The psychosocial and neuropsychiatric sequelae of the acquired immunodeficiency syndrome and related disorders. Annals of Internal Medicine, 103, 760-764. Korniewicz, D.M., O'Brien, M.E., & Larson, E. (1990). Coping with AIDS and HIV. Journal of Psychosocial Nursing, 28(3), 14-21. Kubler-Ross, E. (1969). On death and dying. New York, NY: MacMillan. Larson, E., & Ropka, M.E. (1991). An update on nursing research and HIV infection. Image: Journal of Nursing Scholarship 23, 4-12. Larson, E. (1988). Nursing research and AIDS. Nursing Research, 37, 60-63. Longo, M.B., Spross, J.A., & Locke, A.M. (1990). Identifying major concerns of persons with acquired immunodeficiency syndrome: A replication. Clinical Nurse Specialist, 4, 21-26. Mandel, J.S. (1986). The psychosocial challenge of AIDS and ARC. Focus: A Review of AIDS Research, 1(2), 1-2. Mar-zirk, P.M., Tierney, H., Tardiff, K., Gross, E.M., Morgan, E.B., Hoser, M., Hsu, M., & Mann, J.J. (1988). Increased risk of suicide in person with AIDS. Journal of the American Medical Association, 259, 1333-1337. Morin, S. (1988). AIDS: The challenge to psychology. American Psychologist, 43, 838-842.

PSYCHOLOGICAL RESPONSES TO HIV

Morin, S.F., & Batchelor, W.F. (1984). Responding to the psychological crisis of AIDS. Public Health Reports, 99, 4-9. Morin, S.F., Charles, K.A., & Maylon, A.K. (1984). The psychological impact of AIDS on gay men. American Psychologist, 39, 1288-1293. Nichols, S.E. (I 985). Psychosocial reactions of persons with the acquired immunodeficiency syndrome. Annals of Internal Medicine, 103, 765-767. Nichols, S.E. (1987). Emotional aspects of A I D S - Implications for care providers. Journal of Substance Abuse Treatment, 4, 137-140. Peters, F.L., & Connell, K.M. (1991). Incorporating the affective component into an AIDS workshop. The Journal of Continuing Education in Nursing, 22(3), 95-99. Pollack, M., Gharakhanian, C., Rozenbaum, W., Viallefont, A., & Aime, F. (1987). An unspeakable disease. Self-

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Psychosocial responses among individuals with human immunodeficiency virus infection.

The purpose of this research was to identify and describe psychosocial responses to being infected with human immunodeficiency virus (HIV). Ten adults...
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