Psychosocial issues surrounding HIV infection that affect rehabilitation.
The Acquired Immune Deficiency Syndrome (AIDS) is a serious illness and a public health crisis that merits the concern of everyone. People with AIDS come from subgroups of the population who previously have had little contact with professionals in the helping fields. These professionals have had very little need to deal with their own attitudes about these groups of individuals. People in the helping professions must begin to deal with their feelings in order to provide services efficiently, competently, empathetically, and in a non-judgmental manner.
Experts predict that in the next few years AIDS will surpass heart disease and will be second only to accidents as a major cause of death. The misconceptions surrounding AIDS, its cause and modes of transmission, continue to play important roles in how HIV positive individuals and persons with AIDS are perceived by the public and helping professionals (Armstrong, 1987). Statistical predictions indicate that the number of cases of HIV will continue to increase substantially. As the diseases invade the heterosexual community, it is becoming more than a problem of "gays". There is very likely a danger of hysterical public action that will occur if the epidemic increases to any great extent in the heterosexual population. It was only a short time ago that the majority of Americans felt that the Acquired Immune Deficiency Syndrome was not their problem but a problem of that other group (Archer, 1989; Fleck, 1986).
Literature Review -- Issues
The psychosocial issues, needs and concerns of individuals who are HIV positive are complex and are connected with social and political factors that are a part of the fear and anxiety about contagion and transmission of the virus. These issues include sexuality, discrimination, death as an inevitable disease outcome, body image, relationships with friends and family, different life styles, HIV testing, and homophobia.
Individuals who are HIV positive and asymptomatic live with a fear of becoming ill and those diagnosed with AIDS must deal with their own imminent death. The issues that will be discussed in this section include the effects of AIDS on groups that are already stigmatized, and death as a disease outcome, with its resulting mechanisms of coping.
The current AIDS epidemic has had a great impact on public attitudes toward homosexuality. Homosexuality is still a moral and religious issue to many and it is considered by a significant number of Americans as aberrant behavior (Viele, Dodd, & Morrison, 1984). These attitudes have led to overt discrimination, social ostracism, and deprivation of various rights such as housing, employment, transportation, and funeral services. Parochial attitudes have led to the nick-naming of the disease as the "gay plague" or "WOG" (Wrath of God) (Douglas, Kalman & Kalman, 1985). The mortality of the disease leaves professionals in the helping fields with feelings of helplessness. Katz, Hass, Parisi, Astone and McEvaddy (1987) reported on perceptions of cancer, AIDS, cardiac and diabetic patients. Cancer was perceived as the most painful, but AIDS was perceived as the most deadly. AIDS patients were seen as being the most responsible for their illness, they received the most negative worthiness ratings and they have been strongly rejected socially. It is interesting to note that this study reported that cancer was the most feared disease. Fear of contracting AIDS appears to be less important than the public's hostility against persons with AIDS as social deviants. The mode of disease transmission generates anxiety that is so intense that the emergence of compassion and empathy is prevented (Stevens & Muskin, 1987).
Groups Affected and Disease Characteristics
Individuals who are diagnosed with AIDS are generally young. Forty-seven percent (47%) of these individuals are in their thirties and 22% are in their twenties or forties. Seventy-six percent (76%) of the individuals diagnosed since 1982 have died. It has occurred in all racial and ethnic groups (57% white, 26% black, 14% hispanic, and 3% other). AIDS is a disease that is found most often in groups that are already socially stigmatized. The control of the disease may be based on the willingness of infected and non-infected individuals to modify their sexual behaviors in order to reduce the risk of transmission (Christ & Wiener, 1988).
The group perhaps that has been studied the most extensively is gay men and there has been a growing appreciation of the many ways the epidemic has influenced their lives. The past research about the general mental health of gay men has consistently shown few differences from the mental health of their heterosexual counterparts; but with the fear of AIDS, gay men in Chicago at risk for AIDS were found to have higher mean levels of distress (Joseph et al., 1990). Additionally, there is the continual need for adherence to safer sex techniques in relationships. Stall, Ekstand, Pollack, McKusick, and Coates (1990) have reported that long-term maintenance of health motivated risk reductions in life styles, be they exercise, low fat diets, or the consistent use of seat belts, is often more difficult than the initial behavioral risk reduction.
The discouragement of relapse from safe sex is critical in communities with high rates of infection. The disease prevalence is estimated to be 50% among gay and bisexual men. There is also evidence that is beginning to show that individuals with full blown AIDS and those who have been infected over a longer period of time may have increased infectivity. This estimation confers a very high risk of new HIV transmission for each lapse into unsafe sex. Stall et al., (1990) studied gay men who originally participated in an AIDS behavioral research project. The subjects were initially obtained in 1984 by soliciting bath houses and bar patrons. This convenience sample contained 754 men, and as of 1988, 71% of the cohort continued to respond to the survey. Eight percent (8%) of the original cohort are known to have died. The participants reported frequency of engaging in 22 sexual behaviors with primary and secondary partners each for the preceding 30 days. The data were then divided into four categories: those at no risk or celibate; those at low risk, anal sex with a condom within a monogamous relationship or no anal sex; modified high risk, anal sex without a condom within a monogamous relationship or anal sex only using a condom if the relationship was not monogamous; and high risk, anal sex without condoms outside of monogamous relationships. The goals of the study were primarily to see if a correlation exists between the patterns of sexual risk-taking that occurred over these five years. An additional goal was to describe the retrospective reasons that the men in the study gave for relapse.
The retrospective results tended to involve the nature of the relationship. This relationship involved whether or not both men had the same HIV status, whether the relationship was mutually monogamous, and whether the relationship was initiated before AIDS. The results showed that 50.4% of men in mutually monogamous relationships had unprotected anal intercourse at least once; 36.7% of the men in non-monogamous relationships and 36.4% of men who did not have a primary relationship had unprotected sex at least once. The reasons differed significantly (p) for having unprotected anal intercourse across the groups. These reasons included: unavailability of condoms at the time that sex occurred, combination of alcohol and/or drugs with sexual activity, sexual arousal, having the same HIV antibody status, and being in love. The reasons that were the same for all groups were: having a partner request unprotected anal intercourse, having a good-looking partner, stress, having a partner claim an HIV antibody negativity, being sad or upset, or being afraid that a partner might leave if refused. The study showed that men without a primary relationship were more likely to engage in unsafe sexual behaviors despite knowing the risks. Limitations in this study included concern only about sexual activity in the preceding 30 days, and a study population only from a cohort of men who were self-identified as gay in San Francisco, who were additionally predominantly white and well educated (McKusick, Coates, Morin, Pollack & Hoff, 1990; Stall, et al., 1990).
The Invisible Group
Women are perhaps the invisible group in the AIDS epidemic. The medical and psychosocial needs of women with HIV disease remain unclarified. A woman's sexual contact with an infected man has been well established as a mode of disease transmission. Until recently, heterosexuals with AIDS represented only a small number of the documented cases, but surveillance data reported by Fullilove, Fullilove, Haynes, and Gross (1990) showed an increase in the heterosexual population from 0.5% in 1981 to 5% in 1989. Black women compose 12% of all the women in the United States, but they constitute 52% of all women with AIDS. Women represent the fastest growing segment of people with AIDS in the U.S. Women remain uneducated about HIV risk, testing and treatment. They are unaware of their own risks and of their HIV antibody status, and they are extremely vulnerable to misdiagnosis by practitioners who remain ignorant of the clinical manifestations of HIV disease in women.
Demographics suggest that women with HIV disease are predominantly poor and are disproportionally women of color. These women are accustomed to discriminatory treatment and do not readily seek or trust service providers. They lead lives with limited resources, complicated by child-rearing, their own or a family member's substance abuse, psychological problems, encounters with the criminal justice system and homelessness. HIV is one more challenge for these women. Basic needs take priority over HIV prevention and treatment. Women, therefore, are seen by care providers later in the disease process. For women with HIV, issues of isolation, trust, and empowerment continue to be central. In many societies a woman's value is related to her ability to have children. This cultural norm reflects the need to have large families to succeed in labor intensive farming, the need to be cared for in old age, and the need for social approval. In light of this it is not surprising that seropositive women become pregnant despite a 25 to 40% chance that the child born will be HIV positive and that these children will most likely become orphans. Men in most cultures are the sexual decision makers and consequently women have little say in the use of risk reduction sexual behaviors (Benson & Maier, 1990; Schietinger, 1990).
Intravenous Drug Users
The final group to be discussed is intravenous drug users. IV drug users make up the second largest category of individuals with AIDS. They represent the pivotal point for transmission of the HIV virus and they are primarily responsible for the prevalence of AIDS among children, women and ethnic/racial minorities. Among the people in the United States who have acquired the virus through heterosexual transmission, 70% report sexual contact with an IV drug user. These individuals face all the issues of other persons who are HIV positive, and they face little control over their lives. The sharing of needles and drug equipment continues, despite overwhelming proof of direct transmission of the virus. These people will often do whatever is necessary to get their next "fix" (Burkett & Brown, 1990).
Death As a Disease Outcome
Specific social and psychological tasks confront any individual during a terminal illness. From the moment an individual confronts his or her own risk of contracting AIDS he or she confronts the possibility of death. Anxiety and depression are higher in these individuals. They must live with greater uncertainty about their future, will they develop symptoms, will a cure be found before they become sick, will someone find out their HIV status, will they lose jobs, friends, family, and lovers (Moynihan, Christ, & Silver, 1988; Ostrow, et al., 1989)?
The trend of research has been to compare the reactions and concerns of AIDS patients with those of terminally ill cancer patients. The aim of this type of research has been to establish the psychosocial impact of AIDS relative to other life-threatening illnesses. The findings have indicated that the anxiety, depression, and illness-related concerns of AIDS patients are similar to those of people affected by cancer. There have been inconsistent results when looking at cancer patients and AIDS patients in the area of the effect of hope on survival (Chuang, et al., 1989; Rabkin, Williams, Neugebauer, Remien, & Goetz, 1990). Reaction to diagnosis.
The initial reaction that is seen in HIV testing and counseling programs is denial. In the early stages this denial is a much needed coping mechanism, but if denial continues and sets up unrealistic expectations and impinges on the individual's ability to cope, denial becomes a symptom of maladjustment. Fear is common in people with HIV infection. In our culture, death is not discussed openly, there is a cultural taboo against accepting death as a normal part of life. The ever present fears of being physically, financially, mentally and socially incapacitated are daily companions with HIV infection. Depression is a part of an HIV diagnosis, and is more prevalent in the newly diagnosed. Depressed individuals may turn to alcohol or drags to alleviate the pain of sadness and hopelessness. These things alone have been shown to be factors in relapse into unsafe sexual behaviors. Women with HIV feel guilty, sexually dirty, and ashamed. It is assumed by the general public that they must have been promiscuous to have contracted the disease. They become devalued because it is believed they have done something wrong or unacceptable. Loss is an issue in HIV infection. HIV is a disease of losses. The person with HIV may lose insurance, income, housing, family, appearance, strength, cognitive ability, self-respect, and hope (Corthell & Oliverio, 1989).
The psychosocial tasks of a terminal illness include the maintenance of a meaningful quality of life with disease and the threat of death, coping with disfigurement and loss of function, confronting existential and spiritual questions, and finally planning for surviving of friends and family. Ambivalent community responses to AIDS have, in many cases, meant that these individuals are not afforded the same benefits as others with terminal illnesses. The person with HIV is viewed as a guilty rather than innocent victim (Moynihan, et al., 1988).
Individuals with AIDS are faced with the challenge of trying to continue to function with an unknown future. Family and friends may not understand or be able to accept the severity of the illness. There is a struggle to maintain sexual relationships and physical intimacy. The ill partner has diminished energy, and the fear of exposure to the disease can inhibit intimacy which is a major source of comfort for most terminally ill people. People who are ill seldom want to deal with the issue of death because they are frequently focusing their energy on the demanding task of daily living. Fears of death are usually exacerbated as the illness progresses and when the individual perceives a loss of function. People need to ventilate their feelings about loss and separation. Family and lovers must be encouraged to maintain their own lives and they must also face their feelings of abandonment and anger. It is not socially acceptable to be angry at someone who is dying (Moynihan et al., 1988).
The impact of multiple medical crises leaves people feeling overwhelmed and unable to assert themselves. People describe feeling strongly reassured by being actively involved in their treatment, they begin to have some control when it seems that they have lost all hope of control (Moynihan, et al. 1988). The best that professionals at this point can offer persons with HIV infection, is information. They must be allowed to become familiar with all treatment options, they must be informed about transmission modes so others can be protected, they must know the theories of stress and disease progression, they must be given material about healthy life styles increasing the latency period, and they must be given the opportunity to grieve.
Implications for Rehabilitation
The CDC (Center for Disease Control) now considers those positive for HIV to have a chronic illness. HIV infection is no longer considered to be immediately life threatening. It is projected that the number of people with AIDS is only the tip of the iceberg compared to the number who are actually HIV positive. As the number of individuals who are HlV positive grows, there will be an increasing need for rehabilitation services. People with HIV are classified as disabled under the Americans with Disabilities Act. People with disabilities still represent one of the most unemployed groups, and it is believed that the war of attitudes will grow worse with AIDS.
Most rehabilitation professionals have had some basic AIDS information, but there has been little done in assessing what attitudes and values affect the counseling and placement of individuals with HIV seeking rehabilitation services. Persons with physical disabilities are constantly challenged to cope with a wide range of demands. A goal of rehabilitation is to help clients adapt effectively to the changes associated with disability and to teach them ways of coping (Swanson, Cronin-Stubbs & Sheldon, 1989). This idea is particularly relevant to clients with AIDS: they must be counseled about their disease, high risk sexual behaviors, work potential and independent living choices as their disease progresses. In the United States the greatest number of people with HIV infection is located among individuals who are already stigmatized. These are the intravenous drug abusers, minorities, women, and homosexuals. Many people with HIV feel shame and guilt. Rehabilitation counselors can help these people become a member of a support group where they will be allowed to regain or gain a sense of self-worth. Counselors need to offer clients reassurance about their fight to privacy, while communicating the need for sexual contacts to be notified. The rehabilitation counselor must remember that people in this age group would normally be building toward a future. Counselors who work with this population of clients must be prepared to assist in some difficult decisions. Although new treatment protocols offer longer life spans, it may be a choice that includes living with pain, recurrent medical illnesses, and the side effects of drugs (Dworkin & Pincu, 1993). The counselor will need to develop skills in assisting the client in choosing between the drug treatments or a shortened life span. This assistance must include being fully knowledgeable about available treatments and their effects on the physical and mental well-being of the client.
The goals for rehabilitation counselors need to include seeing AIDS as another disability, working at using a non-devaluing vocabulary, and knowing it is okay to feel sadder for some individuals with HIV than others (Corthell & Oliverio, 1989; Magallon, 1987). Rehabilitation professionals need to become educated in counseling clients with HIV, doing sexual risk behavior assessments, providing basic AIDS education to prospective employers and clients with HIV infection, and discussing the illness in terms of death and dying. The amount of information concerning HIV disease is increasing daily and rehabilitation professionals will need education about this disease in undergraduate, graduate, and continuing education seminars for many years to come.
Anita C. All, PhD, R.N., is Assistant Professor, Adult Nursing, The Medical College of Georgia, School of Nursing, Augusta, GA 30912-4200.
Juliet H. Fried, Ed.D., C.V.E., CRC, is an Associate Professor of Human Rehabilitative Services and Coordinator of the Graduate Vocational Evaluation Program as well as the Executive Director of the Rehabilitative Services Clinic at the University of Northern Colorado.
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Anita C. All, PhD, Assistant Professor, Adult Nursing, The Medical College of Georgia, School of Nursing, Augusta, GA 30912-4200.
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|Author:||Fried, Juliet H.|
|Publication:||The Journal of Rehabilitation|
|Date:||Apr 1, 1994|
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