Chapter 8: Counseling Clients With HIV

Before conducting any screening, assessment, or treatment planning, counselors should reassess their personal attitudes and experiences in working with HIV-infected clients. This section discusses several ways in which counselors can accomplish this, including formal training within the program, examining personal attitudes (e.g., countertransference and homophobia), examining fears of infection, and avoiding burnout. It is important to reassess comfort levels with each client because each client will vary in demographic and cultural background. For instance, a service provider may feel comfortable working with a young Asian American male with a history of alcohol use, yet the same provider may not be at all comfortable with a pregnant Hispanic woman who is an active injection drug user and wishes to have her baby.

Staff members must have the proper training to screen, assess, and counsel clients. Achieving staff competency is an ongoing process. The complexities related to people with HIV/AIDS is constantly changing and does not allow staff members to defer learning or training or even to maintain a "status quo" attitude about their competency.

Examples of methods to help staff grow in the areas of assessment, screening, and treatment planning include the following (see also the section "Cultural Competency Issues" later in this chapter):

• Model skills and competencies. Less experienced staff can observe supervisors or more tenured staff who demonstrate desired qualities.
• Peer training and feedback. Peer teams can provide feedback through direct observation of staff members' interactions with clients, as well as review of staff members' client charts.
• Case presentations. Weekly or monthly group case presentations conducted by a different staff member each time can be effective for building skills and monitoring quality. Case simulation, in which each staff member has an opportunity to ask the "client" a question, is a highly useful training tool. At the end of the presentation, everyone attending can provide feedback about the activity.
• Experiential skills-building exercises. Many activities can be used to sensitize staff to the client's experiences. Activities can include encouraging staff members to go to a confidential and anonymous HIV/AIDS test site, or anonymously sit in the waiting room of the local food stamp office, HIV/AIDS clinic, or county jail. Staff must use different avenues to maintain a keen sensitivity to and awareness of the client's issues.
• Assessment instruments. Use specific assessment tools, such as substance abuse and sexual history questionnaires.
• Formal conferences, training, consultations with clinicians. Often agency budgets are tight, and the first expense to be cut is staff development. This is a major problem for many programs. Programs must establish that improvement and excellence are serious goals and that attending treatment-oriented conferences is a part of building staff competency and moving toward these goals.

It is important that counselors be aware of any of their own attitudes that might interfere with helping a client. By learning to put aside personal judgments and focus on client needs, staff members can build trust and rapport with the client. When a counselor can deal with a client in a sensitive, empathic manner, there is a much greater chance that both will have a positive and successful encounter.

Countertransference is a set of thoughts, feelings, and beliefs experienced by a service provider that occurs in response to the client. Although sometimes these beliefs and feelings are conscious, generally they are not. It is thus unrealistic to expect counselors, usually untrained in addressing unconscious mental processing, to be aware of countertransference. Regular clinical supervision, which should be integrated into the staffing of the program, can help raise their awareness. If such resources exist, counselors may, with caution, address this issue.

In order to deal with countertransference issues, counselors must be willing to examine their skills and attitudes. Working with clients who have HIV/AIDS brings up issues for treatment staff that can be both physically and emotionally demanding. Counselors see a broad range of diverse clients from all walks of life. To work in these fields, providers must learn to be comfortable in discussing topics they may never have talked about openly--sex, drug use, death, grief, and so on. To effect positive change, counselors also must be willing to seek additional specialized training and support.

Countertransference can manifest itself in many different ways. The key to seeing countertransference issues is awareness and consciousness-raising. The commitment to "do no harm" to clients and their families, along with a desire to provide quality services, should be the driving forces for willingly examining these issues.

Following are some common countertransference issues for providers working with clients who are HIV positive ( adapted from National Association of Social Workers, 1997):

• Fear of contagion
• Fear of the unknown
• Fear of death, dying, grief, and loss
• Stigmatization (e.g., of people with mental health problems, "addicts," people who are HIV positive, homosexuals)
• Powerlessness, helplessness, and loss of control
• Shame and guilt
• Homophobia
• Anger, rage, and hostility
• Frustration
• Overidentification
• Denial
• Differences in culture, race, class, and lifestyle
• Fantasies of professional omnipotence
• Burnout
• Measures of success and personal reward

Fear of infection is one of the most challenging issues for counselors. It is essential that providers examine this issue without blaming or judging themselves and others. Professionals who work with HIV-positive individuals may have thought about becoming infected with HIV through their work. Some may fear that scientists are not aware of modes of infection or transmission that might put service providers and their families at greater risk of infection (Montgomery and Lewis, 1995). The key to dealing with this fear is to discuss it and vent the feelings with someone who is safe, trusted, and informed, and to practice universal precautions at all times.

Beyond this, it is essential for providers to have regular and frequent inservice training with updates on the latest research and data about transmission and treatment of HIV/AIDS.

1. Primary medical care

Primary medical care should consist of a comprehensive physical exam, treatment for HIV/AIDS, and treatment for opportunistic infections.

2. Mental health care

A diagnosis of mental illness may reflect the client's affective and mood responses to this medical judgment, may be a consequence of self-medication, or may reflect neurological complications of HIV/AIDS, as well as an underlying mental health disorder. Mental health care should consist of both a neuropsychiatric workup and full mental health status examinations. Service providers should be alert to and notify clients and psychiatrists that complications may arise from the use of preblockedion medication for mental health problems and medications for HIV/AIDS and opportunistic infections.

3. Nutritional care

If the client is also a substance-abusing client, then living with HIV/AIDS is typically mal- or undernourished because of street lifestyles, the effects of HIV disease, and the physical effects of substance abuse. This combination typically results in diminished appetite, weight loss (especially of lean muscle mass), poor hygiene, immune suppression, protein deficiencies, vitamin and mineral exhaustion, and anemia. In addition, providers should be aware that apparent lack of nutrition is not associated with digestive disease or parasites.

Good nutrition is a fundamental part of overall medical care. It improves strength, energy, longevity, and quality of life; increases muscle mass and body weight; decreases likelihood of hospitalization and length of stay; and slows progression of HIV to AIDS.

Without adequate nutrition, HIV/AIDS clients can easily develop malnutrition. Various causes of malnutrition and weight loss include

• Inadequate intake of food
• Anorexia
• Malabsorption of food
• Altered metabolism
• Food and drug interactions
• Androgen deficiency
• No cooking facilities
• Limited income
• Reliance on community food programs

With the onset of malnutrition, the client loses weight and experiences several body composition changes. Starvation results in loss of body fat and muscle. Wasting syndrome produces a loss of a serious percentage of body weight, with accompanying diarrhea and fever, and has been considered a defining symptom of AIDS since 1987. The degree of loss of lean body mass may indicate the length of time that the client has left to live.

4. Lipodystrophy syndrome

Lipodystrophy syndrome occurs in early end-stage AIDS and produces altered body composition and various hormonal and physiological changes. The cause of the syndrome and its relationship with HIV and protease inhibitors are unknown. Because of the disfiguring nature of some symptoms, lipodystrophy can be particularly distressing for women. Symptoms include

• Redistribution of body fat
• Increase in waist size
• Thinning of the arms and legs
• Increased facial wrinkling
• Weakness and muscle wasting
• Gastrointestinal symptoms
• Increased triglycerides and cholesterol
• Decreased testosterone levels
• Hypertension
• Diabetes

To determine body composition changes, provider staff should recommend that clients be measured on a bioelectrical impedance analysis machine. This noninvasive machine sends a weak electrical current through electrodes placed on the client's hands and feet to measure fluid volume, blood cell mass, extracellular mass, and level of body fat. Repeated every 3 to 6 months, this procedure can provide an accurate gauge of the client's biophysiological status.

Providers can treat weight loss and malnutrition by prescribing a nutritious, balanced diet with plenty of fluids and a daily multivitamin, if needed. Protein and calorie supplements are recommended if the client is losing weight. The client should avoid toxic substances such as alcohol, tobacco, and recreational drugs and should practice a daily routine of moderate exercise. Pharmaceutical interventions that may be required include appetite stimulants, thalidomide, and growth hormones.

Treatment staff should also discuss integrative therapies with the client. These can include herbs, acupuncture, meditation, massage, yoga, chiropractic, homeopathic medicine, megadosing, tai chi, qigong, and various religious practices.

5. Dental care

Persons living with HIV/AIDS may require extensive dental care, up to and including tooth extraction, possible jawline reconstruction, and possible dental plate replacement.

6. Ancillary services

The steady increase in the number of women living with HIV/AIDS is creating a great demand for ancillary services such as child care, housing, and transportation. Families needing housing may face long waiting lists for Section 8 housing or may receive Section 8 certificates only to find few landlords willing to accept Section 8 housing payments.

1. Cultural Competency Issues

Culture is the integrated pattern of human behavior that includes thoughts, speech, actions, and artifacts. Culture depends on the capacity of humans for learning and transmitting knowledge to succeeding generations. It takes into account the customs, beliefs, social norms, and material traits of a racial, religious, or social group. With this type of definition, it is easy to see that there is indeed a culture of addiction, a culture of poverty, a gay culture, and even a recovery culture.

Cross and colleagues present a comprehensive discussion of culturally competent systems of care. Five essential elements contribute to cultural competence (Cross et al., 1989, pp. 19-21), which can briefly be described as follows:

• Valuing diversity. Counselors value diversity when they accept that the people they serve come from very different backgrounds and may make different choices based on culture. Although all people share common basic needs, there are vast differences in how people go about meeting those needs. Accepting the fact that each culture finds some behaviors, actions, or values more important or desirable than others helps workers interact more successfully with different people.
• Cultural self-assessment. When counselors understand how systems of care are shaped by dominant cultures, it may be easier for them to assess how these systems interface with other cultures. Care providers can then choose actions that minimize cross-cultural barriers.
• Dynamics of difference. When cultural systems interact, both representatives (e.g., care provider and client) may misjudge the other's actions based on history and learned expectations. Both will bring dynamics of difference--culturally prescribed patterns of communication, etiquette, and problemsolving, as well as underlying feelings about serving or being served by someone who is different. Incorporating an understanding of these dynamics and their origins into the system enhances chances for productive cross-cultural interventions.
• Institutionalization of cultural knowledge. Workers must have accurate cultural knowledge and information or access to such information. They also must have available to them community contacts and consultants to answer culturally related questions.
• Adaptations to diversity. The previous four elements build a context for a cross-culturally competent system of care and service. Both workers' and systems' approaches can be adapted to create a better fit between needs of people and services available. For instance, members of certain ethnic groups repeatedly receive negative messages from the media about their culture. Programs can be developed that incorporate alternative culturally enhancing experiences, develop problemsolving skills, and teach about the origins of stereotypes and prejudice. By creating and implementing such programs, workers can begin to institutionalize cultural interventions as a legitimate helping approach.

Finally, becoming culturally competent is a developmental process for individual counselors. It is not something that happens because one reads a book, or attends a workshop, or happens to be a member of a minority group. It is a process born of a commitment to provide quality services to all and a willingness to risk. (Cross et al., 1989, p. 21)

2. Making culturally competent decisions

Treatment providers must examine two essential factors when working with culturally, racially, or ethnically different populations: the socioeconomic status of the client or group and the client's degree of acculturation. A distinction should be made when discussing a population as a whole and a particular segment of that population. For example, when treating an HIV-infected substance-abusing Hispanic woman, the counselor should focus on the woman as an individual and on the particular circumstances of this individual's life, rather than seeing her as an abstract representative of her culture or race. More often, poverty is the relevant issue to be discussed, rather than specific ethnic or racial factors (Centers for Disease Control and Prevention [CDC], 1998j).

The second factor, degree of acculturation, is important and should be part of the assessment process. How acculturated or assimilated are the family and client? What generation is this client? Assessing for this, and knowing that several generations with different values and levels of acculturation may all live in one household, can test the communication skills and counseling skills of the best service providers. When discussing acculturation/ assimilation and values, counselors should keep in mind that, in general, the more years a family has lived in the United States, the less traditional their values tend to be. Thus a fourth-generation Chinese-American client may not speak Chinese or hold traditional Chinese values. Knowing the values and beliefs of a client is crucial if treatment is to be effective.

Providers must also help develop culturally competent systems of care. A part of this is making services accessible to and often used by the target risk populations. Culturally competent systems also recognize the importance of culture, cross-cultural relationships, cultural differences, and the ability to meet culturally unique needs (Cross et al., 1989).

Aside from assessing cultural competence using the five elements discussed previously, it also is helpful to examine some ways in which providers can minimize cultural clashes and blocks that may exist when working with clients. The guidelines given in Figure 7-3 are adapted from a project conducted by the University of Hawaii AIDS Education Project.

Figure 7-3: Guidelines To Minimize Cultural Clashes

• Plan to spend more time with clients holding values different from yours. The relationship is more complex, and it may take longer to establish trust.
• Anticipate that past frustrations with insensitive or inappropriate providers may have made the client angry, suspicious, and resentful.
• Acknowledge past frustrations.
• Acknowledge the difference between your own experience and that of the client's.
• Individualize (the clear message of all treatment planning)-a client is more than an "addict," an Asian, or a person with HIV/AIDS. Get to know the whole person.
• Encourage disagreement and negotiation to ensure a workable plan.
• Anticipate multiple needs: medical, legal, social, and psychological.
• Be prepared to advocate for the client who may not have the resources, knowledge, or experience to negotiate the HIV/AIDS and substance abuse services systems.
• Assist the client in getting other resources.
• Involve friends and family. This can help ensure that the client receives other needed services.
• Pay attention to communication: nonverbal, expressive style, and word usage and meaning.
• Make use of providers from other cultures.
• Learn the strengths of a culture. In Hispanic culture, for example, the value of "respeto," demonstrating appropriate social respect, can be used to support an intervention plan.
• Expect differences in beliefs about
  • Help-seeking behaviors
  • Caretaking/caregiving
  • Cause of disease/illness
  • Sexuality/homosexuality
  • Death and dying
  • Making eye contact and touching

Source: University of Hawaii AIDS Education Project.

One concern in providing culturally competent care is how to discuss values and differences around sex and sexuality. In many cultures, people avoid discussing sex because they find such discussions disrespectful. This is one reason why so many cultures avoid discussing homosexuality. A counselor should consider using a less direct approach when initiating discussion about issues related to sex and sexual orientation. Many providers believe that some of the public health problems faced in communities of color and the gay community are related to their inability to speak often and directly enough about safer sex practices, risky behaviors, and homosexuality. Even in the recovery culture and in many treatment settings, sex and sexuality are blatantly avoided. Service providers must acknowledge that they, too, in addition to their clients, are often uncomfortable talking about sexuality, sexual identity, and sexual orientation.

Providers also should be aware of the messages often given to communities of color and particularly women. The message, "stop having sex," often advocated by providers has been mixed with historical issues and fears of racial/ethnic genocide, thus making it difficult for most groups to give any credence to those expounding this method of reducing HIV/AIDS. The value of sex and procreation in many cultures makes it difficult for someone from outside the client's culture, especially someone of a different gender, to tell people to not have sex or to have sex only with a condom.

Finally, it is important that the counselor recognize that much of what is asked of clients and their families is personal and private. Questions related to sex, dying, and substance abuse are not usual topics of conversation, and when asking these questions, the counselor crosses many boundaries. It often is considered disrespectful (and offensive to certain cultural values) to ask questions about these specific areas. One wise way to broach these subjects with clients, especially clients who are significantly older than the provider or from a more traditional culture, is to simply apologize

The most practical advice is for providers to (1) maintain an open mind, (2) use cultural consultants for training and support, and (3) when in doubt, defer to the concepts of health and stability over pathology and dysfunction.

Figure 7-4 presents the LEARN model developed by Berlin and Fowkes, an excellent cross-cultural communication tool that can be useful in all client encounters, especially with clients who are culturally different from the provider and who have HIV/AIDS and substance abuse disorders.

Figure 7-4: The LEARN Model

L-Listen with empathy and understanding. Ask the client, "What do you feel may be causing the problem? How does this affect you?"

E-Elicit cultural information, explain your perception of the problem, have a strategy, and convey it to the client.

A-Acknowledge and discuss differences and similarities. Find areas of agreement and point out areas of potential conflicts so they can be discussed, understood, and resolved.

R-Recommend action, treatment, and intervention. Incorporate cultural knowledge to enhance acceptability of the plan.

N-Negotiate agreements and differences. Develop a partnership with the client and the family.

Source: Berlin and Fowkes, 1983

1. Gay, lesbian, bisexual, and transgender populations

Providers wishing to serve the needs of particular ethnic or cultural groups have learned that communities must be understood, respected, and consulted in order to make effective interventions; this also holds true when working with gay men, lesbians, and bisexual men and women. This population is defined not by traditionally understood cultural and ethnic minority criteria, but by having a sexual orientation that differs from that of the majority. Transgender people also form a unique population, often linked to gay men, lesbians, and bisexuals, although they differ from the majority by gender identification rather than sexual orientation.

A sudden increase in the use of methamphetamine, known as "speed," "crystal," "ice," or "crank," by gay and bisexual men has become a matter of grave concern. A primary route of administration for this drug is injection. Combined with its disinhibiting and sexually stimulating effects, gay male injectors of methamphetamine are at extremely high risk for HIV exposure: The drug causes the abuser to suspend all judgment and leaves him often impotent but extremely sexually aroused and often an anal-receptive partner in sex (Gorman, 1996; Gorman et al., 1995).

Men who have sex with men (or MSMs--the CDC category used to report its data) may self-identify as gay (men with homosexual sexual orientations), bisexual (men who feel sexually drawn to both men and women), or heterosexual (men having sex with men as a purely physical act and not a reflection of innate sexual orientation). No matter what their sexual orientation, unprotected sexual contact puts MSMs at risk for HIV. In most reviews of gay men and safer sex practices, most men who were knowledgeable about safer sex failed to practice it while under the influence of some substance (Calzavara et al., 1993; Leigh, 1990; Leigh and Stall, 1993; Paul et al., 1994; Stall, 1987; Stall et al., 1986). Many men from minority backgrounds who have sex with other men do not self-identify as gay or bisexual, so interventions should be based not on sexual orientation, but on sexual behavior.

Some women who have sex with women continue to have sex with men. A number of these women may be injection drug users and share syringes; consequently, they are prone to HIV infection. Although it is unlikely that female-to-female transmission of the virus will occur, lesbians have been urged to use safer sex precautions, such as using dental dams during oral sex (White, 1997).

Lesbians present some specific issues that must be highlighted. Compared with gay men, they are more likely to have lower incomes (as do women in general when compared with men); are more likely to be parents (about one-third of lesbians are biological parents); face prejudice as women as well as for being gay, including the stronger reaction against and willingness to ignore females with substance abuse disorders; are more likely to come out later in life (about 28 years of age versus 18 years of age in men); and are more likely to have bisexual feelings or experiences, so that they are still at sexual risk for HIV infection as well as possible IDU risk (Banks and Gartrell, 1996; Bell et al., 1981; Bradford and Ryan, 1987; Mosbacher, 1993).

Gay youth also present treatment challenges. Special sensitivity and understanding are needed to work with youth of any background, especially youth who are gay or lesbian or from an ethnic minority background. Young gay males in particular may be subjected to harassment at home or school, and they are prone to alcohol use, dropping out of school, running away, and getting involved in sex for drugs or money (Ku et al., 1992; Rotheram-Borus et al., 1995; Savin-Williams, 1994). Many young gay male streetworkers abuse amphetamines, "tweaking" to have a sexual experience, and may exchange sex for drugs.

In general, gay men, lesbians, bisexuals, and transgender people are wary of the medical establishment and may resist seeking health care, distrust the advice given, or question the treatment plan suggested if the provider displays evidence of homophobia or heterosexism. Transgender individuals The following definitions have been provided to clarify the confusion some providers may feel when working with transgender clients (CSAT, in press [b]). Transgender people are a diverse group of individuals who cross or transcend culturally defined categories of gender. They can include the following:

• Male-to-female (MTF) and female-to-male (FTM) transsexuals--those who desire or have had hormone therapy or sex reassignment surgery
• Cross-dressers or transvestites--those who desire to wear clothing associated with another sex
• Transgenderists--those who live in the gender role associated with another sex without desiring sex reassignment surgery
• Bigender persons--those who identify as both man and woman
• Drag queens and kings--usually gay men and lesbian women who "do drag" and dress up in, respectively, women's and men's clothing
• Female and male impersonators--males who impersonate women and females who impersonate men, usually for entertainment

Gender identification is different from sexual orientation. Gender identity refers to a person's basic conviction of being male, female, or transgender. Sexual orientation refers to sexual attraction to others (men, women, or transgender persons). For example, many cross-dressers are heterosexual men who have active sexual relationships with women. Many homosexual men, although historically considered effeminate, identify strongly as men and appear very masculine.

Substance use plays a significant role in the high HIV prevalence in MTF transgender individuals (Longshore et al., 1993, 1998). One study that investigated 519 transgender individuals in San Francisco found high rates of substance abuse among both MTF and FTM individuals (Clements et al., 1998). The study reported that 55 percent of the MTF sample indicated they had been in substance abuse treatment at some time during their lifetime. The study also found that HIV prevalence was significantly higher among MTF individuals (35 percent) than FTM individuals (2 percent), and among the MTF individuals, HIV prevalence for African Americans was 61 percent. Although the HIV prevalence rate was low in the FTM individuals, they commonly reported engaging in many of the same HIV risk behaviors as the MTF individuals (Clements et al., 1998).

Figure 7-5: Guidelines for Working With Transgender Clients.

DO:

• Use the pronouns based on their self-identity when speaking to or about transgender individuals.
• Obtain clinical supervision if you have reservations about working with transgender individuals.
• Allow transgender clients to continue the use of hormones when prescribed; advocate for the transgender client who is using "street" or illegally prescribed hormones to receive immediate medical care and legally prescribed hormones.
• Ensure that all clinic staff receive training on transgender issues.
• Ascertain a transgender client's sexual orientation before treating him or her.
• Allow transgender clients to use appropriate bathrooms and showers based on their gender self-identity and gender role.
• Require all clients and staff to create and maintain a hospitable environment for all transgender clients. Post a nondiscrimination policy, including sexual orientation and gender identity, in the waiting room.

DON'T:

• Call someone who identifies as female "he" or "him," or someone who identifies as male "she" or "her."
• Make transphobic comments to other staff or clients.
• Leave it to the transgender client to educate clinic staff.
• Assume all transgender individuals are gay.
• Force transgender clients identifying as male to use female facilities; likewise, don't force those identifying as female to use male facilities.

2. Women

The disease of HIV/AIDS presents differently in women than in men and progress at different rates for a variety of reasons, including the fact that women usually present later in the HIV/AIDS disease process than men.

Gender-specific services for women should include the following:

• Medical treatment that is accessible, available, and incorporates
  • General health (including reproductive health) and wellness across the life span
  • Mental health counseling (particularly for PTSD)
  • Parenting skills and support
  • Family-focused support
  • Relationship issues
  • Trauma/abuse support
  • Educational/vocational services
  • Legal services
  • Sexuality and sexual orientation issues
  • Eating disorder support
  • Women-only support groups
• Empowerment--that is, holistic programming that emphasizes the development of a partnership with a female service provider, one in which there are mutual respect and many opportunities for positive role modeling
• Transportation services
• Child care, both onsite and supervised
• Woman-sensitive women working with women
• Long-term case management services that extend to the client and her family

A woman's identity as caregiver/caretaker must be recognized as an extremely powerful factor in how she accesses care and treatment and how successful she is in her health maintenance. This is also a factor in a woman's sense of guilt and shame from becoming HIV infected--a societal stigma that only "bad girls" get HIV or are addicts or alcoholics, and the stigma of being an unfit mother if she has lost custody of her children.

Providers must be open and prepared to discuss safer sex from a risk-reduction perspective. They must be well informed about and comfortable in discussing sexuality. Risk reduction is an ongoing type of intervention that goes beyond assertiveness training and teaching women how to put condoms on men. It recognizes the need to "start where the client is" and use appropriate interventions, which may help a woman reduce her risk of getting re-infected or of infecting a partner. This includes instructing female injection drug users about how to use bleach to "clean their works," how to use a female condom, or how to use a vaginal spermicide foam (not the safest risk-reduction method, however) to lower their risk of HIV infection when having intercourse. It also involves instruction for male partners on how to use a condom correctly.

Reproductive decision making

Reproductive decisionmaking is an important area for providers to examine with both female and male clients. Providers must be prepared to discuss pregnancy and family planning with respect and without judgment. This is a difficult task for providers and clients; counselors may have many judgments about "right" and "wrong" and many opportunities for countertransference. One way providers can interact with clients is to help them openly and honestly consider various factors when making reproductive decisions. Figure 7-6 is adapted from an article written by Rebecca Dennison, director of a women's health advocacy organization based in San Francisco, who is HIV positive and considered these issues with her husband in her own reproductive decisionmaking.

Figure 7-6: Reproductive Decision making Questions

• Statistics and information are constantly changing. The latest research from NIH still supports the Pediatric AIDS Clinical Trials Group Protocol 076 study, which indicated that about 8 percent of women treated with AZT during pregnancy and delivery transmitted HIV to their infants. It is unclear to date what the long-term health ramifications are for children who received AZT in utero and at birth. Are you willing to run the risk of having a child who is infected or has been affected by medications used to counter HIV infection?
• Are you able and willing to love and care for a baby, whether or not it is infected?
• How will pregnancy affect your health? In women with high T-cell counts, pregnancy has not been shown to make HIV/AIDS progress, but less is known about women who have AIDS or symptomatic HIV disease.
• Do you have the support of a partner, family members, or friends who can help care for a child?
• Who will care for your child if you become sick or die? Will there be people who will teach your child about his culture, help your child remember you, and raise your child according to your values?
• In what ways (good or bad) will having a baby change your life?
• What are the reasons that you want (or do not want) to have a child?
• Do you have children now? How are things with them?
• Do you feel pressured by others (partners, family, friends, your religion, cultural values) to have (or not have) a child?
• Do you have a family physician or obstetrician who knows about HIV/AIDS and who can give you the health care that you need?
• Do you have enough information to make an informed decision? If not, find someone who can give you information and who will not insist on telling you what to do.
• Are you willing and able to go without substances for at least 9 months? Do you know how their use will affect your unborn child?

Source: Dennison, 1998, p. 7.

The questions listed in Figure 7-6 are extremely helpful, but it is also important to remember that many clients have never made reproductive decisions. One way to provide support in this area, and help build coping skills, is to encourage women to talk with other women--to become part of a support group that is based on empowerment and women helping women. Counselors should see reproductive decisionmaking as a very high priority and move toward this goal in small, incremental steps.

At present, no one knows exactly how to predict which mothers will transmit HIV to their infants. Although there is some speculation that a mother's viral load, measured through viral load assays, may indicate whether her infant becomes HIV infected. Much is still unknown, and controversies abound, but providers must understand and respect the importance of self-determination and the right of women to make their own decisions. Ultimately, it is the woman's choice.

Today, HIV-positive women are looking at the prospect of pregnancy differently than they did in 1989. HIV-positive women who think about becoming pregnant have access to information about viral load testing and the possibility of artificial insemination. Also, HIV-positive women can consider a natural rhythm method, identifying fertile days and limiting unprotected intercourse to those times to decrease their partner's risk of HIV infection. There is no question that even today, facing pregnancy while HIV positive, examining the options related to terminating or continuing a pregnancy, deciding about medications, examining the woman's health and the infant's health, and addressing the long-term implications are all complex issues.

It is essential that providers examine these issues with clients within the context of a biopsychosocial framework. Counselors and health care providers must work together, along with the female client, to stay aware of the latest research and information regarding HIV/AIDS treatment. It is also important to remember that data and information on HIV/AIDS are constantly changing and that the "facts" provided to clients today may be very different tomorrow.

3. Parents who are HIV positive

More and more resources have been developed for single- and two-parent households in which one or both parents are HIV positive and/or the children are HIV positive. There must be a continued awareness of the needs of these families.

These families experience the need for a variety of services, both child-centered and adult-centered. Concerns about guardianship for children after the parent is unable or unavailable to care for them must be a major focus for the parent and the service provider.

If a child also is HIV positive, there will be special needs that the parent may not be able to address while facing her own issues. The already demanding dynamics of childhood, school, and growing up become more challenging for an HIV-infected child and parent. Even if the child is not HIV positive, the demands of parenting can prove rigorous for single parents with HIV/AIDS. Although the parent experiences the relief of knowing the child is all right, the poignant realization that he may not live to see that child grow up can still be painful.

The HIV-infected single parent with a substance abuse disorder is at risk of losing custody of her minor children if convicted of drug possession or substance abuse. If family members disapprove of the single parent's lifestyle, they may seek custody of the active substance abuser's minor children. The counselor may facilitate a plan encouraging the single parent toward goals that support the parenting relationship. This enables the recovery process to take place while the parent and child are working out their own version of permanency planning.

There are support groups and programs for children whose parents are affected by HIV. Although not available in all communities, these groups offer children a chance to talk about their fears regarding their parents' health, learn more about the disease, and socialize with others who are facing these problems. At the same time, the programs can provide the parent with some respite time.

If service providers work in a large urban area, chances are there will be an AIDS Service Organization (ASO) listed in the phone book. This agency is likely to have lists of support groups of all kinds.

4. Hispanics

The Hispanic population in the United States is diverse, composed of a wide range of racial, indigenous, and ethnic groups. The following are important statistics related to the U.S. Hispanic population that affect how outreach, prevention, and treatment planning should be conducted:

• Hispanics have the highest labor force participation rate of all groups.
• Hispanic men have the highest fertility rate of all groups across all ages.
• Hispanic men have the lowest divorce rate of all groups.
• Hispanic men are on average younger than other men in the United States (with median age of 26.2 years).
• 90 percent of Hispanics are Catholic.
• 36 percent of Hispanic children live below the poverty level.
• There is a clear increase in substance abuse as Hispanics become more acculturated (i.e., in second and third generations, and so on).
• Hispanics are overrepresented among HIV/AIDS cases for men, women, and children.
• Hispanics as a group may include aliens who are undocumented or carry immigrant visas (green cards) and who avoid contact with the health care system because they fear possible deportation.

Within the context of acculturation and socioeconomic status, providers should be aware of specific cultural issues that can support interventions and improve a provider's ability to engage Hispanic clients, such as the role of the family, the values of interdependence, respect, and "personalismo" (i.e., importance of personal contact). Understanding these concepts will help establish rapport and trust.

The Hispanic family is generally extended and has many members. A Hispanic client's support system may be composed of siblings, godparents, aunts, and uncles who are all very involved with the client. The family as a whole is of great importance, and often what is best for the family will override what is best for one of its members. Because the family is so important to most Hispanics, children are highly valued. This makes it easier to see how some Hispanic women who are HIV positive grieve deeply about the decision not to have children and may feel unfulfilled and inadequate as a result.

Often, families are aware of homosexual family members, but usually this is not discussed openly. The reality is that many Hispanic men who prefer sex with other men do marry and have children. This partly explains why Hispanics are at such high risk for HIV/AIDS. If the man has married and fathered a child, he has been congruent with the values relating to family; if he then goes out with men, or even with other women, this behavior may be tolerated as long as he continues to provide for his family. Figure 7-7 offers additional considerations for working with Hispanics.

Figure 7-7: Case Study: Heterosexual Minority Men Living With HIV

One recent study recruited 18 HIV-positive, heterosexual, minority men from an outpatient HIV/AIDS clinic in upstate New York and a community-based AIDS service organization in New York City to explore the experience of heterosexual minority men living with HIV. Findings revealed that the experience of surviving HIV infection encompassed several stages.

The participants in this study identified the choices they made in adolescence that led them down a hazardous pattern of behavior as the majority became involved in substance abuse or other illicit activities. With the diagnosis of HIV infection came a "falling off" stage, in which the participants went "over the edge" and initially were afraid to die but then realized that they were okay but vulnerable.

The next stage was "hanging on," in which study participants attempted to reassert control, reevaluated priorities, and developed a new perspective on life and health. In the "pulling up" stage, participants realized that the rescue team included self, God, family, and friends, with self-rescue taking place on emotional, physical, and spiritual levels.

As the participants reached the "turning around" stage, they began to accept responsibility for their health, focused on their abilities rather than their limitations, and began to see themselves as "living with HIV" rather than "dying from HIV."

Source: Sherman and Kirton, 1998.

5. African Americans

HIV/AIDS disproportionately affects African Americans, and from July 1998 through June 1999, injection drug use accounted for 26 percent of AIDS cases among African American males and 26 percent of cases among African American females (CDC, 1999b). (See Chapter 1 for more information about the epidemiology of the AIDS pandemic.)

African American women in particular have special needs. Minority women represent the fastest-growing segment of the U.S. HIV/AIDS pandemic. One study (Kalichman and Stevenson, 1997) examined the psychological and social factors related to HIV risk among 153 African American inner-city women. The women completed measures of HIV risk history, sexual and substance use behaviors, perceived risk for HIV infection, self-efficacy to reduce risk (i.e., the belief that one can effectively perform specific behaviors), and perceived social norms supporting risk reduction. Fifty-five percent of the women reported at least one factor that had placed them at known risk for HIV infection. Results showed that HIV risk history was associated with a self-perceived risk for HIV infection and low self-efficacy to perform risk-reducing actions, suggesting that HIV risk-reduction interventions targeting inner-city women should focus on skills training approaches to build self-efficacy and empower women to adopt risk-reducing practices (Kalichman and Stevenson, 1997).

Many African Americans have a deep-seated mistrust of the health system. This dates back to the pre-Civil War period when, because they were considered property and had no legal right to refuse, slaves were sometimes used in medical experiments (Gamble, 1997). A collective memory thus exists among the African American community of their exploitation by the medical establishment (Gamble, 1997). More recently, the syphilis study performed at Tuskegee University from 1932 to 1972, during which 400 African American men infected with syphilis were deliberately denied life-saving treatment, has fostered in some African Americans the belief that contact with health care institutions will automatically expose them to racist administrators and policies. Several articles point to the Tuskegee study as a significant factor in the low participation of African Americans in clinical trials and organ donation efforts and in the reluctance of many African Americans to seek routine preventive care (AIDS Weekly Plus, 1995; Karkabi, 1994; Thomas and Quinn, 1991). As one AIDS educator said, "so many African American people that I work with do not trust hospitals or any of the other community health care service providers because of that Tuskegee experiment. It is like _ if they did it once, then they will do it again" (Thomas and Quinn, 1991).

Counselors should be aware that the issues of slavery and institutional racism are constant and prevalent facts in the lives of many African Americans and should be addressed early in treatment so they are acknowledged, validated, and brought into the treatment process (CSAT, 1999A).

Spirituality is very important for many African Americans. The relationship between an individual and the faith community is a critical source of strength. In addition, many African Americans have strong social networks. Along these lines, for African Americans with substance use disorders and HIV/AIDS, support groups of friends may be more likely to be helpful and less undermining than support groups of families. This is perhaps due to the lingering stigma of the ways in which HIV/AIDS is acquired--both intravenous drug use and homosexual activity are still highly stigmatized acts within many African American communities. Thus, activating family supports may be difficult, and providers should encourage clients to participate in support groups composed of their peers.

6. Asian Americans

Asians and Pacific Islanders are a culturally and linguistically diverse people from the Asian continent and the Pacific Islands. In the United States, they include nearly 40 different nationalities, 50 different ethnic groups, and more than 100 languages and dialects. Asians and Pacific Islanders comprised 4 percent of the total U.S. population in 1999. From July 1998 through June 1999, they accounted for 0.7 percent of all adult and adolescent HIV cases (these include only persons reported with HIV infection who have not developed AIDS), and 0.4 percent of adult and adolescent AIDS cases. Of the total AIDS cases reported for this population through December 1998, 89 percent were in men; 79 percent of those were reported in men who have sex with men (CDC, 1999b). Among women, nearly half the cases (48 percent) are associated with sex with an infected or high-risk partner, and 17 percent are reported from IDU (CDC, 1999b).

Service providers also should shed the notion of the "model minority," which often typecasts Asians and Pacific Islanders and limits treatment access. Often, Asians and Pacific Islanders believe the model minority myth and feel isolated when they test positive. They may also feel they have let down their families and communities.

By American standards, Asians and Pacific Islanders tend to communicate more indirectly, often by telling stories and discussing what happened to themselves and others. Their feelings and opinions are implied rather than directly stated. Asians and Pacific Islanders are also less likely to provide direct verbal expression of their feelings by using "I" statements than are members of other groups. Providers should expect to reveal personal information about themselves if they want clients to disclose their own problems. Asians and Pacific Islanders may prefer to keep strong feelings under control so that they will not become disruptive. Caring is often demonstrated by physical support such as by giving money, cooking favorite foods, or giving advice rather than by verbal expression or physical affection.

A problemsolving approach rather than an intrapsychic one is more effective with Asian and Pacific Islander clients. Problemsolving enables a counselor to provide information, educational materials, and referrals without probing for more personal information and pushing a client to express feelings. For Asian and Pacific Islander clients with somatic complaints, suggest relaxation and breathing techniques, meditation, qigong, yoga, massage, acupuncture, tai chi, or biofeedback. It is generally not helpful to discuss underlying feelings because it is not only culturally unacceptable, but many Asian and Pacific Islander clients do not see the emotional-physical connection. In problemsolving, providers should actively give suggestions and if necessary, be directive rather than let Asian and Pacific Islander clients struggle to figure out what options are available to them.

Asking personal questions about sexual risk factors, especially early in the helping relationship, could be viewed as intrusive and disrespectful. Asian and Pacific Islander clients may not answer truthfully, if at all, and may not return. It is best to start with the least intrusive or nonthreatening questions and explain why the information is needed. If clients seem uncomfortable with certain questions, ask them at a later date.

Making an effort to connect with clients outside actual treatment appointments via followup calls is also helpful. Asian and Pacific Islander clients may not initiate contact when they have a problem because of cultural tendencies to minimize problems to reduce stigma and because they do not want to be intrusive and bothersome. In all interactions, it is helpful to minimize the stigma Asian and Pacific Islander clients attach to their HIV/AIDS status. Counselors should not refer to themselves as HIV/AIDS or mental health counselors unless they know the client is comfortable with this. These titles imply the client has an unacceptable condition and can increase stigma. Clients may be more receptive to treatment for HIV/AIDS if they are combined with other, less stigmatized health issues.

Group interventions can be effective if everyone speaks the same language well enough and if the group is centered around an un-stigmatized activity, social gathering, or education session. Providing refreshments also facilitates bonding. Asian and Pacific Islander participants will look to a facilitator to provide direction and guidance. Rather than be assertive in talking, Asian and Pacific Islander clients will more likely wait for a space to open up for them to speak and consequently will rarely have the opportunity to do so when in a group with predominately non-Asians and Pacific Islanders. Should this happen, the group leader needs to facilitate opportunities for Asian and Pacific Islander clients to participate.

7. Native Americans

Native Americans and Alaskan Natives comprised 0.9 percent of the total U.S. population in 1999. From July 1998 through June 1999, they accounted for 0.4 percent of all adult and adolescent HIV cases reported (these include only persons reported with HIV infection who have not developed AIDS) and 0.6 percent of adult and adolescent AIDS cases. The largest percentage of HIV and AIDS cases in women was from heterosexual contact (39 percent and 23 percent, respectively). The largest percentage of HIV and AIDS cases in men was reported in men who have sex with men (43 percent and 47 percent, respectively).

The CDC found that Native Americans have high rates of STDs and substance abuse, which in turn raise their risk of HIV/AIDS. They also lack access to diagnosis and treatment. Gay men and substance abusers run the highest risk of HIV/AIDS among Native Americans and Alaskan Natives, just as they do among white Americans.

The combination of high rates of cofactors for HIV/AIDS, limited access to health care, lack of information and education about HIV/AIDS issues, substantial numbers of Native Americans who are already infected with HIV, and the flow of Native Americans between urban centers and reservations all lead to an HIV/AIDS crisis for Native American communities.

In 1991, the American Indian Community House, which ministers to the health, social service, and cultural needs of Native Americans in the New York City area, created the HIV/AIDS Project, the first Native American program east of the Mississippi River to provide culturally sensitive legal services, HIV/AIDS treatment information, emergency assistance, and prevention education. The Friendship House Association of American Indians in San Francisco provides another example of treatment (drop-in centers). This program provides comprehensive treatment to Native Americans living with HIV/AIDS. Services target the gay, lesbian, and bisexual communities. HIV/AIDS is presently underreported for Native Americans and is based on the high incidence of sexually transmitted diseases (STDs) in general, and thus substance abuse treatment centers will be faced with more and more HIV-infected Native Americans.

8. Clients involved with thecriminal justice system

Unfortunately, many HIV-infected individuals who are in treatment for HIV find it impossible to remain on their medication schedules after being arrested because their medications are often confiscated for days at a time.

The population in prisons and jails tripled between 1987 and 1997. Overcrowding and understaffing are common in prison facilities and can increase inmates' risk of contracting HIV. In 1992, HIV/AIDS cases for people in State and Federal prisons reached 195 per 100,000 compared with 18 per 100,000 for the general U.S. population.

Risky behaviors that lead to HIV infection are not eliminated when a person is imprisoned but may actually increase in frequency and availability. This occurs for several reasons. First, drug offenses count for the single largest number of Federal and State crimes for which people are arrested and incarcerated. In 1996, 79 percent of State inmates reported at least one use of illicit drugs during their lifetime. Therefore, high rates of HIV infection are not surprising in a population so closely characterized by heavy substance abuse involvement. In addition, many people enter jail or prison already infected with HIV. A 1993 study of 46 correctional facilities found people entering these facilities had an average infection rate of 1.7 percent. In some facilities, however, rates for women were as high as 21 percent and 15 percent for men. Among injection drug users, rates ranged from less than 1 percent to 43 percent.

Injection drug users face particular risk in prison settings as clean syringes are all but impossible to secure. Although syringes are not officially available, they can be acquired through illicit prison markets at exorbitant prices ($34 in one Canadian facility) or through risky exchange of syringes for unprotected sex. Syringes are typically not new or sterile. As a result, injection drug users have as their only recourse used or shared syringes, which increases their chances of HIV infection. Tattooing is also common practice among prisoners and is another source of HIV infection. To date, there have been at least two documented cases of HIV/AIDS related to tattooing with unsterile needles in a correctional facility.

Only six prison systems in the United States distribute condoms: Mississippi, New York City, Philadelphia, San Francisco, Vermont, and the District of Columbia. Distribution strategies range from receipt of a single condom per medical visit to receipt of multiple condoms during HIV/AIDS education workshops. Furthermore, condom distribution programs send mixed messages because sexual activity in some facilities is illegal and a punishable offense. In other facilities, correctional medical and social service staff may advocate condom availability while administration and security officers oppose it.

Sixteen prison systems mandate HIV testing, and although 77 percent make testing available to inmates on request, few inmates request it for several reasons. First, confidentiality of results is not guaranteed. Second, mandatory testing may result in the segregation of those who test positive from those who test negative or who do not test. Third, prisoners do not wish to acknowledge activities that could subject them to further sanctions. Fourth, confidentiality on discharge is eliminated because the Federal Bureau of Prisons requires HIV testing for all inmates on their release. HIV-positive inmates are asked to directly notify sex partners and significant others of the results. However, the Bureau of Prisons handles only a small percentage of inmates, and its policy is not the norm.

Treatment for HIV-positive inmates is often inadequate when available. Primary medical care may be limited to Pneumocystis carinii pneumonia prophylaxis and HIV monotherapy. Combination therapy may not be available or accessible to inmates, given the cost of medications, limited storage, refrigeration requirements for some medicines, and the strict adherence regimen required by combination therapy, which would require round-the-clock monitoring and assistance by typically unwilling and suspicious security staff.

Although there are large numbers of substance abusers within correctional facilities, less than 15 percent participate in treatment programs. This is partly because of lack of program availability and the common type of program offered (i.e., 12-Step, abstinence-based.) A 1991 study reported that only 1 percent of inmates with moderate to severe substance abuse disorders received appropriate treatment. Many of these treatment programs advocate sexual abstinence during recovery. Often, these programs offer no or little information about safer sex practices or advocacy around changing sexual behaviors. When persons with substance abuse disorders in treatment relapse, as is often the case, they may also engage in risky sexual behaviors. They are most likely to engage in risky sexual behaviors with sexual partners from similar treatment networks. These partners may include people who have used syringes, traded sex for money or drugs, or been victims of trauma. All of these populations are likely to have higher rates of HIV infection, making transmission likely.

9. Adolescents

Adolescents are another group that is experiencing an increase in incidence and prevalence of HIV. Since 1994, findings from the Monitoring the Future surveys have revealed a dramatic and sustained increase in consumption of licit and illicit drugs among adolescents--this after nearly two decades of sustained decrease in drug consumption. Studies also note that teens are having sex earlier than ever before, often with multiple partners and inconsistent use of condoms, putting them at greater risk for HIV/AIDS. Beyond this, young people find themselves marginalized in U.S. society; this is especially true for young gay and bisexual youth, sexually active young women, and young people of color.

According to the CDC, AIDS is the fifth leading cause of death for Americans between the ages of 25 and 44 (CDC, 1999f). At greatest risk are young, disadvantaged females, particularly African American females, who are being infected with HIV at younger ages and higher rates than their male counterparts (CDC, 1998j). Because of the long and variable time between HIV infection and AIDS, surveillance of HIV infection provides a clearer picture of the pandemic in young people than surveillance of AIDS cases. From the States for which HIV is a reportable condition, young people ages 13 to 24 accounted for a much greater proportion of HIV than AIDS cases (17 percent versus 4 percent). Of these HIV infections, 38 percent were reported among young females, and 56 percent were among African Americans (CDC, 1999b).

10. Older adults

The last few years have witnessed greater increases in the number of HIV/AIDS cases among middle-aged and older individuals than in those under 40 years of age. Through June 1999, people over the age of 50 account for 11 percent of cumulative AIDS cases and 5 percent of cumulative HIV cases in the United States. Women comprise a greater percentage of all AIDS cases as age increases, ranging from 13 percent of AIDS cases among people aged 50-59, 15 percent of AIDS cases among those aged 60-69, and 21 percent of those 65 and over. For women with HIV, 22 percent of this group is in the 50-59 age bracket; 24 percent is aged 60-64; and 31 percent aged 65 and older. The rate of HIV infection in older women reflects the greater incidence of surgeries (such as hysterectomy) that require blood transfusions.

Although many of these AIDS cases are the result of HIV infection at a younger age, many people become infected after age 50. Rates of HIV infection among older adults are difficult to ascertain because very few people over 50 years of age routinely test for HIV. Because older adults are diagnosed with HIV/AIDS at advanced stages, older adults are less amenable to treatment, become sicker, and die faster than their under-50 counterparts. In addition, retroviral treatments and opportunistic infection prophylaxis may interact with medications the older person is taking to treat other preexisting chronic illnesses and conditions. Also, the vast majority of medication studies are done on much younger subjects. There is little research on the metabolism of anti-HIV drugs in older adults.

Unfortunately, many medical professionals do not consider older patients to be at risk for HIV infection. A study in Texas found that most doctors never asked patients older than 50 years questions about substance abuse or HIV/AIDS or discussed risk factor reduction. Doctors were much more likely to rarely or never ask patients over 50 about HIV/AIDS risk factors (40 percent) than to rarely or never ask patients under 30 (7 percent). Older persons may not be comfortable disclosing their sexual behaviors to others, since their generation or culture may not encourage such disclosures. This can make finding treatment programs and support programs especially difficult.

Certainly, there is a need to educate service providers about the sex-related behaviors of older persons. At the very least, service providers should conduct thorough sex risk assessments with their patients over 50, and challenge all assumptions that older people do not engage in these activities or will not discuss them.

11. Sex industry workers

Among sex workers, street prostitutes are the most vulnerable to HIV infection, given the coexisting features of poverty, homelessness, history of childhood sexual abuse, and alcohol and drug dependence. Comparatively, male and female sex workers who work in massage parlors, escort services, their own apartments, or brothels rather than on the street are far less likely to be at risk for infection, less likely to depend on substances, and more likely to control sexual transactions and insist on condom use.

Seroprevalence rates among sex workers vary dramatically. A 1990 study of nearly 1,400 sex workers in six U.S. cities yielded a seroprevalence rate of 12 percent, ranging from 0 to 47 percent as a function of the city and the level of injection substance abuse. Most alarming was the high association of injection substance abuse and HIV infection rate.

Among female sex workers, IDU continues to be the major cause of HIV infection. Female injection drug users who trade sex for money or drugs are more likely to share syringes than injection drug users who do not exchange sex for money or drugs. Drug use also increases the likelihood of sex work and risky sex. Studies of crack cocaine abusers in three urban neighborhoods found that 68 percent of the women who were regular crack smokers exchanged sex for drugs or money. Of those, 30 percent had not used a condom in 30 days. Recent research has also demonstrated an association between HIV infection, heavy crack use, and unprotected fellatio. This is likely due to the combination of poor dental hygiene, damage to the mouth from hot crack stems or pipes, high frequency of fellatio, and inconsistent or marginal condom use. Street-based sex workers may agree to unprotected sex if clients offer more money, if workers themselves are desperate for money to buy drugs, or if activity has been slow.

HIV treatment challenges may occur given the sex workers' more immediate needs for drugs, food, and housing. These needs overshadow future concerns about living with HIV/AIDS. Beyond this, sex workers with HIV/AIDS may continue to work routinely for the purpose of exchanging sex for drugs or money. Sex workers thus run risks of spreading HIV/AIDS as well as reinfection of HIV and the acquisition and transmission of other diseases such as hepatitis and STDs.

12. Homeless people

Homeless people suffer higher rates of many diseases, including HIV/AIDS than the general population. No national statistics exist, but studies within major U.S. cities are illustrative. In a 1993 study of homeless adults in Mississippi revealed that 70 percent of respondents engaged in at least one of the following high-risk behaviors: unprotected sex with multiple partners, injection substance abuse, sex with an infected partner, and exchanging unprotected sex for drugs or money. Of these respondents, nearly half reported two risk factors, and 25 percent reported three or four risk factors. Homeless people--especially women and youth--may engage in risky behaviors for survival reasons.

1. Stage of HIV infection

Segregating groups by stage of HIV infection presents difficulties, but not doing so can also be problematic. Clients who are HIV positive but asymptomatic and attending a support group for the first time may be uncomfortable when encountering clients in the late stages of AIDS. Such a meeting may force them to confront fears about their own mortality before they are ready to do so. Because treatment programs have limited resources, separating groups by stage of HIV infection may be impractical. Programs able to support separate groups may wish to use the three-group model, with groups consisting of

• Clients newly aware of their positive HIV status
• Those who are asymptomatic or mildly symptomatic
• Those with more advanced disease

In a group consisting solely of clients symptomatic with AIDS, members are vulnerable to becoming involved in a process of continual grieving. Sometimes groups have to discontinue for a period of time when too many members become sick or die. For this reason, it may be helpful to establish support groups for time-limited periods.

1. Denial

Denial about a client's HIV/AIDS diagnosis can be experienced by both clients and counselors. Denial is a natural response and should be confronted only if it causes harm; for example, when a client in denial about his illness delays in making arrangements for medical and nursing care or procuring assistance with daily living activities. Counseling can play an important role in helping clients accept their illness and the eventual need for home health or hospice care. Denial can also affect counselors. For example, because of the advances being made in the medical treatment of HIV/AIDS, a counselor may be in denial that a client will die of AIDS. Counselors must recognize and confront their own denial issues so that they are able to discuss death and dying and realistically explore these issues with their clients. Programs need to have inservice education and proper supervision for counselors who work with terminally ill clients. Proper supervision will help the counselor confront her denial and help lessen her stress.

2. Planning for death

It is often difficult for a counselor to know how or when to talk to a client about planning for death. It is optimal, if possible, to begin a discussion of the client's future, including death, before the client is extremely ill. Questions that often lead the counselor into a discussion of death and dying, and also are centered on contingency planning, include, "if you were to become too ill to care for yourself any longer, what would you do, who would help, where would you go?" The counselor and client should also consider where the client would like to die because different arrangements may be required.

Counselors who will be working with clients at the end stages of AIDS should examine their own beliefs about death and dying. In addition to this, counselors may need to learn about the physical and biological process of dying so that it can be explained to clients. It is also important to keep in mind that clients' perspectives on death and dying are deeply rooted in their personal histories, religious practices, ethnic customs, family traditions, and community standards.

Many clients fear dying alone or in pain, or of losing control of their bodily functions, and thus having to rely on others for care. If clients want to talk about this personal and often frightening experience, the counselor should listen and help the client locate answers to any questions concerning the process of dying. Counselors should ask their clients how much they want to know and make sure that clients know what to expect physically. Understanding the process and planning the details within their power can give clients a sense of control.

In addition, clients may ask counselors to share their own beliefs about death and dying. Minimal sharing can be reassuring, but counselors should focus on the clients' perspectives, beliefs, and needs. As counselors listen, valuable information and insight into possible resources and support needed by clients will come to light.

3. Pain management

Pain management is often a difficult struggle with those who are in the end stages of AIDS. The issue of pain is complex because many medical conditions related to a client's HIV/AIDS can cause her pain. Another concern of clients is the appropriateness of pain management when it might hasten death. If a client raises this issue, the counselor should be prepared to discuss it, however, the counselor does not initiate discussion on this topic. If the topic arises, clients should be encouraged to discuss pain management issues with their physicians and, if appropriate, their significant others.

4. Unfinished business

One important area that counselors should explore with their clients is "unfinished business." For example, a counselor might suggest that a client make a will. But there may remain other issues to be addressed. Should a client consider making an advance directive or a living will? Will the client want to appoint a health care proxy? Should he consider granting power of attorney to a significant other? Should he appoint a guardian for his children? Are there family issues that he wants to address? Some counselors express a desire to be there at the time of a client's death, or a client may request that someone be there until death. Counselors and health care providers may also spend more time counseling the client's significant others or support people during this time than they spend counseling the client. Here again, a little information can go a long way to reduce fear and anxiety in clients and their significant others.

5. Bereavement

Bereavement is a particular problem for programs with large numbers of HIV-infected clients. Bereavement can affect clients (who may grieve at the deaths of other clients, friends, or loved ones from HIV/AIDS); clients' significant others; and counselors who work with dying clients. The following strategies may be helpful in supporting those clients who are dealing with bereavement.

• Acknowledge the reality of the bereavement in supportive individual counseling.
• Encourage the expression of grief both verbally and nonverbally (e.g., art therapy, expressive movement, psychodrama).
• Provide group support for clients and their significant others who are experiencing grief and bereavement.
• Acknowledge deaths with memorial services, flowers, photographs, and participation in commemorative projects such as The NAMES Project Foundation's AIDS

Memorial Quilt, which attempts to include the names of everyone who has died of AIDS.

6. Kubler-Ross bereavement and loss model

One of the best and most often referred to models of bereavement and loss comes from physician and psychiatrist Elisabeth Kübler-Ross. In her book, On Death and Dying, she provides a five-stage theory that has become common language when dealing with death and dying. Her model of bereavement is essentially a series of defense mechanisms, or coping strategies, that are used by an individual confronted by death. These stages can also be observed as individuals are confronted with other traumatic circumstances or information, such as a positive HIV test, an HIV/AIDS diagnosis, or the death of a friend or peer. The five stages are denial, anger, bargaining, depression, and acceptance.

Individual interpretations of and responses to death and dying vary greatly, not only between people, but between cultures and religions. Yet, as this model eloquently describes, adjusting to death is a process, not an event that occurs seamlessly and in a logical sequential order.

The coping strategies and stages described below are not a recipe for health. Acceptance may not be the goal for everyone. Emotional processing is made more challenging when survival needs such as shelter, food, and medical care are not being met. Many clients are used to surviving with "street smarts" and not by psychoanalytical parameters and discussions about childhood. This model is included merely to help providers understand and relate to their experiences and their clients' experiences.

Denial

This is a time of terror management, an effort to psychologically buy some time while adjusting to the information or situation. It is here that people can feel the most isolated and the most suspicious and doubtful of the information that they are receiving. Denial is a natural and healthy response. It is not necessarily something that counselors must feel compelled to confront and rid clients of at the earliest possible moment. Allowing clients to have denial can be challenging, and for the caregivers and support staff it can be anxiety producing, but it is important to remember that above all else, this is the client's experience. Denial is not always negative. The times that denial must be confronted are when it causes a danger to self or others.

Anger

This stage emerges as the person accepts the diagnosis and begins to strike out. The most common targets for this anger are the people closest and safest to him, especially caregivers and service providers. Anger can also be a test. The person facing death may want to know who can be counted on as the end nears. This can sometimes be indirectly demonstrated by the client who may test the counselor's tolerance of anger; if the anger can be tolerated, perhaps the counselor can be trusted to tolerate the client's death and feelings of fear.

Bargaining

Bargaining is the stage at which the individual commits to an uncommonly generous or humanitarian act with the belief that she will be spared or miraculously cured if deemed "good enough." The goal is a miraculous correction of the wrongs she has done, or possibly to buy some valuable time for treatment or dealing with end-of-life issues. The obvious danger is that most are not "cured" in that sense of the word, so what can happen is a loss of belief or faith.

Depression

Depression represents a loss of denial, and an acknowledgment that the information is accurate and the situation and its consequences are unavoidable. As with clinical depression, the depth and severity depends on the specifics of the situation, mitigating factors, available resources, and the individual. This stage is marked by surrender to sadness; it is appropriate and adaptive. It is a time to collect resources and energies so that more processing can occur at a later time.

Acceptance

This is the stage in which some come to terms with their situation and feel a welcomed release from struggle and strife. Option formation and reality-based planning, given the circumstances, become the focus. Acceptance occurs when there is agreement between the physical body, the emotional heart, and the cognitive mind, that death will eventually be the outcome.

7. No code or do-not-resuscitate orders

The responsibilities for determining when, how, and under what circumstances to evoke or effect no code or do-not-resuscitate (DNR) orders are properly the role of the family, or those with power of attorney, and the physician. The order itself comes from the physician or from the client through the physician. Although counselors do not initiate discussion of this topic, they should be aware of these terms and what they mean so that they can help prepare and inform the client and his family of these options.

No code and DNR are terms used while a client is receiving care at an inpatient facility to identify a client who does not wish to receive medical intervention to save his life. For example, if a client has a DNR order and his heart stopped, he would not receive electric shock or cardiopulmonary resuscitation. It is the framing of these decisions and the terms used to help clients understand them that make all the difference. A counselor can help clients and their families talk about these concerns by first normalizing the process. That is, to present issues as no codes or DNRs, wills, and guardianship of minor children as decisions each person or family must come to grips with--whether they are ill or not, HIV positive or not. Counselors can approach and begin to discuss these issues within a context of "hoping for the best and planning for the worst." The discussion, then, is not related to being terminally ill, but rather to choosing, taking control, and making difficult, responsible decisions.

It also is helpful for the client or the family to discuss with the physician changing the goal of medical treatment. For example, at some point in the treatment process, when death is imminent and further aggressive medical intervention will be futile, the goal of treatment could be changed to "comfort care" from "no code."

Some States also permit a person who has been discharged from a hospital to home to have a DNR, which can be tacked to the door. The drawback of home DNRs is when a client dies and emergency medical personnel arrive, in most places they are required to try to revive the client. A counselor should be familiar with State laws about home DNRs so that a client who wants to die at home can be given the best information about this option.

Health care providers and counselors must maintain a sense of how their communication efforts are affecting the people they are trying to help. A specific and practical example of this is in discussions around no code or DNR orders. As health care providers discuss treatment options with clients and their significant others and the possibility of changing the goal of treatment to comfort care, one distinction that can be helpful for some people is the difference between "life support" and "death prolonging."

The current standard of care as defined by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) states that providers should develop a framework for decisionmaking in situations that may require the withholding of resuscitative services or the foregoing or withdrawing of life-sustaining treatment. Decisionmaking in such cases should reflect the following priorities (JCAHO, 1999):

• Enhancing the client's comfort and dignity by addressing treatment of primary and secondary symptoms
• Effectively managing pain
• Responding to the client's and his family's psychosocial, spiritual, and cultural needs

Many believe that decisions about medical treatment should not be based on "heroic" or "extraordinary" measures, or on medical complexity. They should be based on the potential outcomes and the benefits and burdens to clients and their support systems. An open and honest dialogue with the client, followed by a similar meeting with the entire care team, can facilitate decisions and move people to a place of comfort and resolution. Many States allow an individual to designate someone to serve as their "Durable Power of Attorney" for health care. Staff and clients should know what the State's regulations are.

Case Study 1

Frankie is a 21-year-old, self-admitted gay man. He has been injecting "crystal meth" off and on for 3 years. He has also been a chronic marijuana and alcohol abuser since he was 12 years old. He uses these substances particularly when he can't afford the "rig" and other drugs. He has sold his body for drugs but claims that he only has sex with "nice businessmen types." Frankie is new to the area and has been in town for about 9 months. He says his family does not approve of his lifestyle, so they made him leave home. He is in phone contact with his sister occasionally but only to let her know that he is "alive." Frankie lives in shelters and on the streets with other homeless adults and youth.

Frankie decides to enroll in an outpatient program because he has been hassled by the police lately and he went on a bad run using something called "fry" (marijuana soaked in formaldehyde, then smoked). He ended up in the emergency psychiatric unit at the county hospital and the staff there suggested that he seek some help. In addition, Frankie does know about HIV/AIDS and STDs and is concerned about his sexual behavior.

Issues for the counselor

Referral and linkages

Frankie will need referrals for counseling and possibly testing for HIV and STDs if the facility does not provide these services. Referrals and linkages can be obtained by getting Frankie's written consent if the facility is communicating with another organization about services for its clients. However, if an outside agency is providing services to the facility, then a Qualified Service Organizational Agreement (QSOA) (see Chapter 9 for more information about QSOAs) or Release of Information form will be required in order for the substance abuse treatment facility to be compliant with confidentiality laws. Frankie will also need a risk assessment to help him determine just what his risks are and risk-reduction counseling regardless of his decision about any medical testing.

Special population/cultural competency

The fact that Frankie is gay could be a concern if the treatment facility has not dealt with members of the gay population or has difficulty in dealing with this population. It will be important that Frankie is assigned to a counselor who is nonjudgmental and has had some experience with young gay men.

Relapse

With Frankie, it may not be an issue of relapse as much as getting Frankie to discontinue or cut down his use. He is currently motivated for treatment but this "scare" may not last. A risk reduction model may work best with Frankie as this appears to be his first attempt at treatment and total abstinence may be unrealistic. This should be explored further with Frankie.

Denial/anger

Although Frankie may not have shown any of these emotions yet, they probably should be explored with him (as well as others, such as depression, grief, loss) specifically as it relates to his family and their treatment of him, as well as his having to survive on the streets.

Medical complications

There may be a need to further examine Frankie if he does not stop using fry or other substances. The medical complications to the heart, kidneys, lungs, and brain would be worse if he has HIV/AIDS or any other STDs. Because he has been on the streets, he probably has not seen a doctor for anything until he ended up in the emergency room.

Case Study 2

Tina is a 29-year-old African American female. She has been using marijuana and alcohol since she was a teenager and progressed to using cocaine by her early 20s. Tina reports snorting cocaine for a couple of years when working as a dancer. She then discovered crack, which has been her drug of choice for the last 6 years.

Tina has been in and out of jail several times over the past few years, usually on prostitution charges. While in jail, she always tests for STDs and HIV/AIDS. She has repeatedly tested positive for chlamydia and has received treatment numerous times. Despite the treatments for the STD, she continues to test positive. During her most recent incarceration she was diagnosed with pelvic inflammatory disease, had an abnormal Pap smear, and tested positive for HIV. Other than being a little underweight she looks good and states that she feels fine with the exception of some abdominal pain.

Tina is very excited about her "new life" with her boyfriend, by whom she has been trying to become pregnant. Having HIV/AIDS does not seem to be a major concern for Tina because she knows that there is medication out there for the disease. She reports that she was already getting off drugs before the bust because she wants to get married and have a baby now that she's found the right man. She reports her main support to be her boyfriend of 2 months. She does have a couple of female friends but does not consider them close.

She has been court ordered to go to substance abuse treatment. She has made several treatment attempts before and states she doesn't understand why she has to go to treatment now when she was already planning to stop her drug use voluntarily. She is now being admitted to a 30-day inpatient treatment program; otherwise, she faces going to jail for a minimum of 1 year.

Issues for the counselor

Relapse

This is the main area of concern. Tina has a long history of substance abuse. She reports little to no social support for her recovery. The nature of crack addiction suggests that a 30-day inpatient setting will "only be the beginning" of the treatment episode. The connection and consequences of high-risk activities need to be discussed and risk-reduction practices demonstrated and rehearsed. It appears that Tina is clearly in denial about her addiction and diseases and does not understand treatment and recovery. This may be exhibited through her either becoming a "compliant client" just to get along or a defiant, angry client because she doesn't think she needs treatment.

Medical

Tina has a number of medical issues that must be addressed and further explored. Tests and treatment for recurrent STDs, pelvic inflammatory disease, abnormal Pap smear, and HIV/AIDS are needed. With further exploration cervical cancer may be revealed, which could, in turn, give her an AIDS diagnosis. A pregnancy test may also be needed. The counselor needs to remember that it is Tina's decision about the issue of pregnancy. A counselor should watch for the issues relating to HIV/AIDS and pregnancy that can arise.

Referrals and linkages

Tina will need medical referrals. She has so many issues in this area she would benefit by having an HIV/AIDS case manager to assist her in linking with and coordinating appointments, medication, and so on. She may also need all the "standard" services such as housing, transportation, and clothing.

Compliance

There could be some compliance issues with this client. This is indicated by the good possibility that she was not taking her STD medication as directed and her statement that she doesn't understand why she has to go to treatment. This belief should be explored further because it could be a lack of information/education and not a compliance issue at all.