Rehabilitation counseling for people with HIV disease.

Acquired immune deficiency syndrome is everyone's crisis. Gone are the days of thinking of AIDS as a gay disease, a disease for drug users, a disease that no one we know will get. Gone are the days when only a handful of counselors would work with people with AIDS. The AIDS epidemic has changed, has grown, has mutated and exploded to the extent that today, counselors are no longer immune. We can no longer escape our responsibility to work with clients concerned or frightened or hurt or infected by AIDS. AIDS . . . has affected the field of counseling in ways so crucial that we can no longer sit back as innocent bystanders. We must act. (Kain, 1989, p. viii)

As we enter the second decade of the HIV (human immunodeficiency virus) disease pandemic, it is increasingly important that rehabilitation professionals become knowledgeable about the particular needs and issues that impact people who are HIV-infected. According to the Centers for Disease Control and Prevention (CDC), every month over 4,000 people in the United States are diagnosed with AIDS (CDC, 1994), and it is estimated that between 1 and 2 million people in the United States are currently HIV-infected (Keeling, 1993). Men who have sex with other men still represent the largest group of people with AIDS (44%), but the number of women who are infected - either through injecting drug use or heterosexual contact with men who are HIV-infected - continues to rise, with women now representing 18% of the total cases of AIDS (CDC, 1994). In addition, the incidence of AIDS among African Americans and Hispanics is higher than among Whites, for both men and women. "The disproportionate impact of the epidemic on minority communities is reflected in AIDS incidence rates which are 6 times and 3 times higher, respectively, among blacks and Hispanics than among whites" (CDC, 1994, p. 5). Keeling (1993) also makes note of this phenomenon, stating that

overrepresentations of people of color . . . [who are also] injecting drug users will continue to result in an increasingly disproportionate impact of the epidemic on African American and Hispanic people . . .; it is worth emphasizing as strongly as possible that these disproportions occur not because of the biologic reality of race, but because race is a "front" for class, socioeconomic status, and poverty in this context. (p. 264)

While it is important to be aware of the demographics of the disease, it is also important to remember that "risk behaviors account for transmission of HIV infections, not membership in any particular ethnic group" (Jenkins, Lamar, & Thompson-Crumble, 1993, p. 113). Although there is a higher percentage of people who are HIV-infected in certain populations or groups, it is important that all people receive prevention information since anyone who engages in high risk behaviors can become infected. At this time there is no cure or vaccine for HIV disease. The only way to decrease the spread of HIV is through education and prevention.

An Overview of HIV Disease

While AIDS is still used as a generic term, many professionals now use the term HIV disease to describe this complicated disease process. The distinction is important because not everyone who is infected with HIV has AIDS, which has implications for whether people are eligible for a variety of medical, social service, and human services programs. It is helpful to view HIV disease on a continuum. When people first become infected, they may experience mild flu-like symptoms, but these symptoms dissipate in a short period of time. After the time of infection people move into the "window period." During this six week to six month period, people can be tested for HIV but their results will be negative since the tests that are currently used test for HIV antibodies rather than the virus itself, and it takes time for people to develop antibodies. Although they may test negative during this period, people can transmit the virus immediately after infection. After the window period, if infection has occurred, the person will test positive for HIV antibodies (Keeling, 1993). Regarding testing, it is important to educate clients about the difference between anonymous and confidential testing. Readers may want to contact the CDC, or their local AIDS Support Organization or Public Health Department for more specific information about testing.

Many people who test positive for the HIV antibody are asymptomatic (symptom-free) for years. Because of the mercurial nature of the disease, people may develop symptoms and have them disappear only to recur. It takes an average of 8 to 10 years for people who are HIV infected to develop AIDS. This time frame is sometimes difficult to gauge because many people do not know exactly when they became infected. Of course some people develop AIDS more quickly and others more slowly; the time frame listed above is just an average (Keeling, 1993). People who are HIV infected are diagnosed with AIDS when they meet the CDC criteria, which defines AIDS as "a specific group of diseases or conditions which are indicative of severe immunosuppression related to infection with" HIV (Centers for Disease Control, 1994, p. 1). A physician must make the diagnosis, and it usually occurs when a person has one of a variety of opportunistic infections (OI) related to a compromised immune system (Keeling, 1993). At this time, the CDC recognizes 26 OI (e.g., Kaposi's Sarcoma, pneumocystis carinii pneumonia) in the diagnosis of AIDS. On average people now live from 2 to 4 years after being diagnosed. As more medical treatment options are discovered that slow the progression of the disease, more people will be living longer with AIDS (M. Davis, Co-Director of The AIDS Project, personal communication, February 19, 1994). This has a direct bearing on rehabilitation professionals who "are likely to encounter increasing demands for treatment and services" (Alston, Wilkins, & Holbert, 1995, p. 26).

As stated earlier, the distinction between being HIV-infected and having a diagnosis of AIDS may have implications for the kinds of medical and social services people receive. For instance, some AIDS support organizations will serve any person who says he or she is HIV-infected while others need medical documentation before they can provide services. In some cases, only people who are HIV symptomatic or have a diagnosis of AIDS may receive certain services, like financial assistance or medical drug trials. Much of this may depend on agency policy, financial resources, and the number of clients served (M. Davis, Co-Director of The AIDS Project, personal communication, February 19, 1994).

Medical Issues

Many health professionals view HIV disease as a chronic illness rather than a terminal one (Ginzburg, 1988), and the medical implications are similar to those of other chronic and/or life threatening illnesses. From a rehabilitation perspective, HIV disease is viewed as a disability and people who are HIV-infected are protected from discrimination by the Americans with Disabilities Act (Beck, Carlton, Alien, Rosenkoetter, & Hardy, 1993). People who are diagnosed with AIDS are viewed as severely disabled (Reichert & MacGuffie, 1988).

Another medical implication for rehabilitation professionals is that some people may have dual and triple diagnoses, not just HIV infection. For example, there has been an increase in the number of people who are diagnosed with HIV disease, chemical dependency, and chronic mental illness. Obviously people with multiple diagnoses will have a myriad of issues with which to contend. Because of the complicated nature of the disease, it is important that rehabilitation professions support and encourage a team approach to treatment. Rehabilitation professionals should work closely with physicians, occupational therapists, physical therapists, AIDS support organization case managers, and other helping professionals when providing services to clients with HIV disease.

Rehabilitation counselors also need to be aware of how medical conditions and treatment for HIV disease may affect a person's psychological functioning. Possible physical changes people may experience include unusual body sensations, agitation, inability to concentrate, and disturbances in sleeping and eating patterns (Keeling, 1993). Other medical issues that may need to be addressed include pain management, maintenance of strength and endurance, and independent self-care. As people become ill, maintaining quality of life becomes even more important (All & Fried, 1994). For a more complete overview of the medical implications of HIV disease, please see Keeling (1994).

It is necessary to encourage and educate clients to be active participants in their medical care (Nichols, 1986). In addition, rehabilitation counselors may need to "demystify medical issues ...and to serve as a liaison with the medical profession" (Mejta, 1987, p. 4). Clients may need to make difficult decisions about whether to consent to certain medical treatments or drugs. Some people choose to use alternative methods rather than or in addition to mainstream medical treatments. Empowering clients to make medical decisions requires education and knowledge on the part of the client and the rehabilitation professional. In addition to acting as advocates, rehabilitation workers can educate clients on ways to advocate for themselves with other medical and health professionals. Communication skills and assertiveness training may be necessary and essential educational components of a treatment plan. One strategy is to have clients take someone with them to medical appointments to take notes and serve as a "reality check," to help them process the information later and make sure they heard it accurately (Nichols, 1986).

As people live longer with HIV disease, they may experience neurological complications as a result of AIDS dementia complex. Although this term is not technically accurate, it is commonly used to describe the neuropsychological changes people who are HIV-infected experience (Ferry, 1990). Some of these changes include blunted affect, poor concentration, impaired short- and long-term memory, apathy, social withdrawal, avoidance of complex tasks, and personality changes. Over time people may become severely disorientated and delusional, with marked cognitive deficits (Andrews, 1992; Faulstich, 1987; Ferry, 1990). Other psychopathological issues include anxiety, depression, and suicidal ideation (Faulstich, 1987). Because there is currently no data available to determine how quickly or how slowly people begin to exhibit neuropsychological complications, a number of strategies may be used, including education, pharmacotherapy, and psychosocial support. Psychoeducation as a strategy is most beneficial if used before people become too impaired so they can make important financial and legal decisions while they have the "time, judgment, and capacity to do so" (Ferry, 1990, p. 704).

Psychosocial Issues

Psychosocial reactions to an HIV/AIDS diagnosis are similar to those for people with other life-threatening illnesses (Mejta, 1987). Several authors (e.g., Hoffman, 1991; Nichols, 1986) have developed models of adjustment to one's HIV status that may be helpful for rehabilitation professionals to review. For example, Nichols' (1986) model consists of three stages: (a) the crisis stage, which includes denial and anxiety; (b) the transitional stage, when the person begins to come to terms with his or her HIV status; and (c) the deficiency stage, when the person adjusts to being HIV-infected. As with any developmental stage model, it is important not to expect every person to move through each phase in an orderly, systematic way. Some people may vacillate between one or two stages, while others may skip stages entirely (e.g., never experiencing denial about being HIV-infected), but these models are helpful when used as a guide in determining possible issues and concerns the client may be experiencing.

Depression and suicide may be pressing issues for people soon after their diagnosis (Kelly & Murphy, 1992; McKusick, 1988). Counselors need to be honest and direct in assessing whether a client is in crisis related to his or her infection status. People's responses to finding out they are HIV infected are similar to those of people who learn they have cancer or some other terminal illness (Faulstich, 1987), with the added issues of stigma and societal bias. In addition, stress of the disease may exacerbate preexisting psychopathology. Other issues that may need to be addressed are lack of social support and social isolation (McKusick, 1986; Price, Omizo, & Hammett, 1986). People may experience alienation, stigmatization, and discrimination related to their HIV status (Herek & Glunt, 1988; McKusick, 1986). In addition, guilt and self-blame may come into play (McKusick, 1986). People may need to discuss their feelings related to how they became infected including having unprotected sex with people of their same or opposite gender, multiple sex partners, sex for money, non-monogamous relationships, and drug and alcohol use/abuse. People may also need to process their feelings about having infected other people, sometimes knowingly. For example, HIV-infected women may need to talk about their feelings of guilt and shame about transmitting the virus to their child(ren) or their feelings of guilt about dying and leaving their children in the care of others. It is necessary for rehabilitation professionals to be aware of their own thoughts and feelings about these issues before they counsel clients about them, otherwise they may impose their own values and beliefs on their clients.

Grief and loss are also important psychosocial issues. Because most or all people who are HIV infected will develop AIDS and die (Keeling, 1993), they have to deal with anticipatory grief issues, and they may "feel that they are moving through life and life stages in fast-forward or at an accelerated pace" (Hoffman, 1991, p. 482). In addition, they may need to discuss unresolved grief from previous life experiences (Schwartzberg, 1992). The issue of multiple losses is relevant for both clients and rehabilitation professionals. Some people who are HIV infected may have lost as many as 30-40 friends and family members to the disease. In these cases, using a diagnosis like posttraumatic stress disorder is more appropriate than anxiety or adjustment disorder because it "emphasizes that the reaction is a normal response to a catastrophic event rather than a maladaptive reaction to a normal stresser" (Martin, 1989, p. 71). Using an appropriate diagnosis, when necessary, is important in determining treatment options. People with HIV disease who have had loved ones die may also experience additional feelings of loss and sadness on particular "anniversary" dates, such as the person's birthday or the day the person died. Other losses that may need to be addressed include one's sense of vulnerability and immortality; plans for the future; role and identity; body image, health, and mobility; a sense of one's role or purpose in the world; employment; self-sufficiency; and housing. These losses can create a need in some people to discuss issues related to religion and spirituality. Rehabilitation professionals should not shy away from discussing these topics if they are raised by clients, however, professionals who do not feel comfortable talking about spirituality issues need to make appropriate referrals so clients have an opportunity to have their needs met.

With respect to sexuality, it is important to educate people who are HIV-infected about safer sex, including abstinence and ways to negotiate safer sex, but first rehabilitation counselors need to learn what safer sex is and how to talk about sexuality with their clients. Rehabilitation professionals need to "be familiar and comfortable with talking about the full range of human sexual behavior" (Macks, 1988, p. 3), and conversations with clients may need to be frank and explicit. Counselors should have enough knowledge and awareness to know when to refer a client if they are uncomfortable or feel ill-prepared to address the issues at hand. For a extensive review of how to discuss sexuality with clients, please see Gray and House (1991).

Once people are diagnosed with HIV disease, they will have to deal with issues of secrecy and "coming out." The process of coming out includes needing to make decisions about to whom and when to reveal their HIV status. This may also include a need for some people to decide whether to share their sexual orientation as well as alcohol and other drug use/abuse history. Some clients may make a decision to reveal their HIV status to everyone, while others choose to keep this information private. Rehabilitation professionals should help clients weigh the pros and cons of disclosure within the context of the client's life, rather than use a general policy about disclosure for all clients. For example, it may be important for some clients to be open with everyone about their HIV status because they engage in public advocacy activities for people with HIV disease, while other clients may choose not to disclose because of concerns about losing work or housing or their standing in their community. By using basic counseling skills, rehabilitation professionals can help clients feel safe enough to disclose when they are ready to talk about it. Once people are infected, it is also important to educate them about how to decrease their risk of further infection without making assumptions about what they do or do not know about HIV.

When working with people who are HIV infected, it is important to assess which coping skills and defense mechanisms they use. Research on long-term survivors (people who have lived for at least three years after being diagnosed with AIDS) shows they have an adaptive and flexible style of coping, maintain close and supportive relationships with others, are active participants in their own medical care, and are able to deal with ambiguity in their lives (Jue, 1994). Asking people how they have dealt with previous traumatic or crisis issues provides useful information about how they might deal with the current situation. For example, denial as a coping mechanism can be seen as both positive and negative depending on the purpose it serves for the client. Some people move into denial because they are not ready to process the truth and need time to incorporate it into their self-perception, which seems to be an appropriate reaction to a challenging situation. People who are adjusting to their infection status may experience intense levels of feelings including shock, desperation, anger, isolation, depression, and confusion. These same feelings can also be experienced by the counselor. Intense feelings of anger are common and may be directed toward perceived inadequacies in health care providers, including rehabilitation professionals (Faulstich, 1987). It is important to allow clients time and space to process these emotions in an open and supportive environment, whether in a group setting or on an individual basis.

Rehabilitation counselors must also be prepared to address the needs of family members and loved ones. It is important to find out who the client views as family and who he or she wants to have included in the rehabilitation process. Do not assume that only blood relatives are considered family or that they are welcome in the rehabilitation process. It may be helpful to refer clients for legal assistance when making decisions about consent to medical treatment, living wills, power of attorney, and legal guardianship. Depending on the person's physical health, parents, partners, and friends may have to take on new caretaking roles that impact everyone concerned in a variety of ways. In addition, people with HIV disease, particularly women, may have to make decisions about who will care for their children after they die. Family members and loved ones may experience many of the same or similar issues that people who are HIV infected confront, including issues surrounding disclosure of HIV status, stigmatization, anger and shame, grief, and denial. The temperamental nature of the disease can lead to emotional and physical exhaustion for caregivers, as well as the person who is infected (Stulberg & Buckingham, 1988). As with other disability situations, it is important to assess previous family conflicts and coping strategies. Based on this information, rehabilitation professionals can make decisions about how to best serve the whole family, including referrals to appropriate agencies. Family members and care-givers should be encouraged to make use of respite services, as well as educating them to serve as advocates for their loved one. For further information about the ways HIV disease can impact the family, see Bradley and Ostrovsky (1989) and Stulberg and Buckingham (1988).

Vocational Implications

Vocational and work related issues for people with HIV disease are many and varied. Some people may lose their jobs because they are fired or because they are not able to maintain their previous level of functioning. Other people may decide to make a career change once they learn they are infected. People who are able to maintain current employment may need to discuss concerns about future vocational and financial independence. In addition, there may be a need for job analysis and modifications as the disease progresses, as well as reasonable accommodation issues including time off for medical appointments and flexible work hours. Stigma by employers, supervisors, and co-workers may be another issue that impacts people who are HIV infected. On-site education may be needed when placing or maintaining a person with HIV disease on the job. Rehabilitation professionals can also provide services for people who are HIV-infected who are no longer able to maintain their present employment, including finding new employment, volunteer work, or independent living services. "Persons with AIDS need assistance to realize a sense of purpose and meaning, whether through job rehabilitation, assistance redefining self-worth, or help finding a flexible job so the person with AIDS can work when feeling energetic" (Haney, 1988, p. 252).

Counseling Interventions and Strategies

When working with people who are HIV infected, there are any number of counseling strategies that can benefit clients. The first of these is teaching clients decision-making and problem-solving skills, if they do not already have them. People with HIV disease will be faced with many challenging issues, including whether to take a particular medication a physician recommends or how to disclose their infection status. Teaching people communication skills, including using role playing, may also help clients when interacting with friends, family members, employers, and other medical professionals. For example, rehabilitation professionals can role play situations where the client has decided to disclose her or his HIV status to an employer or a new sexual partner. Stress management, relaxation training, and assertiveness training are other beneficial skills for clients to acquire. These skills can be used to help people become empowered self-advocates who are in control of their own disease process. Another strategy to empower people is to be aware of the language used with respect to HIV disease. Do not refer to people as "AIDS victims," but instead call them people with AIDS (PWA) or people living with AIDS. When in doubt as to what language to use, listen to how clients refer to themselves and others or ask them directly.

The use of support groups and support systems is strongly encouraged in the field of HIV disease, in addition to individual and family counseling. "Self-help groups can fulfill educational, moral support, spiritual, and/or religious needs and help prevent suicide through mutual support and encouragement" (Carlton, Beck, & Alien, 1993, p. 3). Some people may opt for more traditional long-term therapy groups, while others choose to become involved in psychoeducational groups for people who are HIV infected. When making a referral to a support group it is important to learn something about the members who make up the group. For example, women who are HIV infected may choose not to become involved with a group that consists of gay and bisexual, even nongay, men because their needs are different. Culture, ethnicity, and how people became infected may also influence whether they choose to join a particular HIV support group. Joining a group may be difficult for new members and for people who are newly diagnosed because it shows them how far the disease may progress, working against their denial system. When making referrals, it is useful to educate people about what to expect from the group and to give them permission to move at their own pace (Dworkin & Pincu, 1993; Nichols, 1986).

Strong case management skills and knowledge about resource and referral sources can greatly benefit both the client and the counselor. Interacting with the staff at a local AIDS service organization can be an invaluable resource. Knowledge about crisis intervention and crisis management as well as grief counseling skills are also important. Finally, the ability to increase education and awareness of the disease, as well as prevention strategies, is also essential to decreasing the number of people who contract this disease.

Multicultural and Cross Cultural Implications

As stated earlier, anyone can become infected with HIV regardless of race, gender, ethnicity, religion or faith, socioeconomic status, disability status, or sexual orientation if she or he engages in risk behaviors. People become infected because of what they do, not who they are or which group they belong to. Therefore, it is important to design prevention and education strategies with cultural differences in mind. For example, a program designed for young gay men would not have the same import or impact on nongay women. It is also important to use counseling strategies which take cultural differences into account (see Greene, 1994; Hoffman, 1993; Jue & Kain, 1989). For more specific information on (a) counseling women infected with and affected by HIV disease, please see Stuntzner-Gibson (1991), Wiener (1991), and Ybarra (1991); (b) counseling African-Americans see Dowd (1994) and Jenkins, Lamar, and Thompson-Crumble (1993); (c) counseling Hispanics see Carballo-Dieguez (1989); (d) counseling gay and bisexual men see Barret (1989); and (e) see Shernoff (1994) for further information about HIV disease and people who are chemically dependent.

Most of what is known about people with HIV disease is based on the white, gay male community. There is still a great deal that needs to be learned about the impact of this disease on nongay people, women, and people of color (especially African American and Hispanic populations). Increasingly more people who are infected are from economically disadvantaged groups (Hoffman, 1993) or are people who currently have financial resources but will "suffer considerable financial loss secondary to HIV-related medical treatment" (Cochran & Mays, 1991, p. 554). Knowledge of the cultural implications of HIV disease will effect the kinds of education and rehabilitation services that are provided to all groups.

Impact on Rehabilitation Professionals

"AIDS can provoke, within the counselor, feelings, attitudes, and behaviors that interfere with the counseling process. This can and does occur even with counselors who generally are very accepting of clients and who are knowledgeable about AIDS" (Mejta, 1987, p. 3). Working with people who are impacted by HIV disease can be a challenging experience. In order to provide effective services, rehabilitation professionals must come to terms with their own fears and prejudices regarding HIV disease (if any), including racism, sexism, and heterosexism. This self-awareness is not a one time event, but a process that occurs over time as counselors have new client experiences and learn more about themselves. Rehabilitation professionals also need to work through any negative feelings they may have regarding behaviors clients may have engaged in, including same-gender sex, drug use, and sex with multiple partners. Common feelings that emerge for helpers include detachment, fear of contagion, fear of dying and death, denial, homophobia, countertransference, overidentification, anger, and a need for professional omnipotence (Dunkel & Hatfield, 1986; Macks, 1988; Mejta, 1987). Other feelings include powerlessness, loss of control, feelings of inadequacy, and awareness of their own mortality.

If not recognized and addressed by counselors, these feelings and reactions can impede the counseling process and adversely affect the counseling relationship. These feelings may be expressed indirectly in the counseling relationship as detachment, distancing (physically and emotionally), denial of the client's reality and his or her experience of that reality, blaming, behaving unpredictably, becoming overly controlling, not investing in the client, becoming self-protective, and maintaining strong boundaries. (Dunkel & Hatfield, 1986, cited in Mejta, 1987, p. 3)

It is important for rehabilitation counselors to become aware and remain aware of their feelings and get the support they need in order to continue providing services to people who are HIV-infected (Barret, 1989; Nichols, 1986). Rehabilitation professionals need to take care of themselves, both to serve as a positive role model for clients but more importantly to keep themselves going. Often listening and being supportive of the strong emotions a client is experiencing is much more therapeutic than saying the "right" thing, but it can be emotionally taxing. Counselors need to give themselves permission to talk and express their own strong emotions with others, just as they teach their clients to do.

Rehabilitation professionals should expect ethical dilemmas around issues of confidentiality, case reporting, partner notification, mandatory testing, and involuntary disclosure (please see Barret, 1989; Feist, 1991; Stanard & Hazier, 1995 for further information). Decisions about professional boundaries may also need to be addressed, including questions about where and when to meet with clients, whether to provide services outside the realm of counseling, the use of touch, and role confusion. The effective and appropriate use of continuing education, consultation, and supervision is essential in these matters.

Conclusion

Fewer than 15 years ago, terms like HIV, AIDS, T-cell count, and Kaposi's Sarcoma were either non-existent or used only by medical professionals, but now they are commonly heard on the news and read on billboards, to name a few places. Such has been the impact of HIV disease. Although not every rehabilitation worker will work directly with people with HIV disease, it does affect us as a profession.

If we do not accept the role demanded of us by the AIDS crisis, rehabilitation professionals . . . will become part of the problem rather than an important part of the solution. . . . Our [professional] responsibility . . . directs us to focus on meeting the challenges of awareness [and education], support, quality of life, and independence for people with AIDS. (Atkins & Hancock, 1993, p. 34)

Only by meeting these challenges can rehabilitation professionals continue to provide quality services to people infected with and affected by HIV disease.

Acknowledgement

I want to thank the following people for their thoughtful and helpful comments on earlier drafts of this manuscript: Meg Davis, Aileen Schulman and Connie Matthews.

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Brandon Hunt, Department of Counselor Education, Counseling Psychology, and Rehabilitation Services, The Pennsylvania State University, 311 CEDAR Building, University Park, PA 16802.