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Spiritual Wellness for HIV/AIDS Clients:
Review of Counseling Issues

Jennifer L. Holt, Ph. D
Bonnie L. Houg, Ph. D
John L. Romano, Ph. D
Department of Educational Psychology
University of Minnesota
Minneapolis, Minnesota 55455

Authors' Note: The authors gratefully acknowledge the assistance and guidance provided by L. Sunny Hansen and James H. Rothenberger, faculty members in the University of Minnesota's Counseling and Student Personnel Psychology Program, Department of Educational Psychology, and Division of Epidemiology, School of Public Health, respectively.

Abstract

The epidemic of HIV/AIDS has resulted in an increasing population of individuals in need of counseling services: Persons Living with AIDS (PLWAs), as well as family, friends and caregivers. The relationship between HIV/AIDS clients' counseling and spiritual issues is demonstrated by a review of salient literature. Three broad themes are utilized: terminal illness issues such as post-death existence and existential meaning of life; religious disenfranchisement from society and/or families of origin; and multicultural spiritual and religious issues. Practical recommendations for counselors and research implications are included.

The epidemic of HIV/AIDS has resulted in an increasing population of individuals in need of counseling services. Given the complexity of this disease, and its ramifications on many levels, the counseling of Persons Living with AIDS (PLWAs), as well as their family, friends or caregivers, may well include the need to address spiritual concerns. The purpose of this article is to demonstrate how HIV/AIDS counseling issues are integrally connected to spiritual issues, as clients struggle to integrate themselves and their beliefs vis-à-vis the disease, their families of origin, and cultural and religious influences. While a number of authors have partially discussed spiritual ramifications with this population (Burke & Miller, 1996; Carson, Soeken, Shanty , & Terry, 1990; Hall, 1994; Helminiak, 1995; Kain, 1996; Lamendola & Newman, 1994; Nelson & Jarratt, 1987; Saynor, 1988; Warner-Robbins & Christiana, 1989), this article hopes to provide a comprehensive and current overview of HIV/AIDS spiritual wellness issues for the counseling professional. Practical counseling recommendations and research implications will be provided as well.

For the purposes of this review, a clear distinction will be made between "religion" and "spirituality," as the following definition indicates: "[S]pirituality can occur in or out of the context of organized religion, and not all aspects of religion are assumed to be spiritual" (Chandler, Holden, & Kolander, 1992, p. 170). Legere (1984) stated, "Spirituality is not a religion.

Spirituality has to do with experience, religion has to do with the conceptualization of that experience. Spirituality focuses on what happens in the heart; religion tries to codify and capture

that experience in a system" (p. 376). Our use of spirituality as a concept also includes clients' existential concerns about life and death, as well as a questioning life's purpose and meaning (Milton, 1994; Saynor, 1988). This article will explore three broad themes related to spirituality which may arise in counseling sessions with HIV/AIDS clients: 1) terminal illness issues such as post-death existence and meaning of life; 2) religious disenfranchisement from society and/or families of origin due to the stigma of HIV/AIDS; and 3) cross-cultural spiritual and religious issues.

Theme No. 1: Terminal Illness and Spirituality

Recent advances in medication may be changing the status of HIV/AIDS from that of a terminal illness to a chronic illness (Beaudin & Chambre, 1996; Centers for Disease Control, 1997c). Yet, as with cancer, the spectre and stigma of living with this disease, regardless of its official status, can have long-ranging psychological effects. Questions of life and death and their connection to spirituality are significant presenting issues for those dealing with such illnesses, and may be particularly poignant for clients in the latter stages of HIV/AIDS. For instance, in a qualitative research study of nine men living with HIV/AIDS, Lamendola and Newman (1994) stated, "The expanding consciousness associated with coming to grips with HIV/AIDS [could] be seen in the changing quality of these men's lives [and] . . . included . . . a deepening of their spirituality. They were facing the profound issues of living and dying in a meaningful way" (p. 19). Warner-Robbins and Christiana (1989) noted, "It is not uncommon for PWAs [sic] to be drawn even closer to their spiritual beliefs. Having to face the finality of this disease will frequently encourage a person to address issues never before confronted in his or her life" (p. 46). In "Hope and Spiritual Well-Being: Essentials for Living with AIDS," Carson et al. (1990) reported "the terminally ill . . . exhibited the greatest spiritual perspective" (p. 30). In addition, spirituality appears to have a positive relationship with PLWAs’ ability to cope and live a reasonably peaceful and fulfilling life. In a report that focused on the well-being of people diagnosed with HIV/AIDS, researchers found spirituality to be a major theme in the lives of those who were able to face an HIV/AIDS diagnosis with equanimity (Kendall, et al., 1989). One client discussed his positive attitude toward death, which was a result of his belief in a higher power: "Someday I will be free--flying high among the birds . . . I will be free from this pain and suffering and leave this body behind me" (Kendall, et al., p. 161).

Yalom (1980) identified three issues that become particularly relevant for the general population of terminally ill clients: fear of death; the need for hope; and creation of life meaning. Regarding fear of death, it is logical to assume that this fear becomes magnified when one is faced with the prospect of death from an illness such as HIV/AIDS, particularly in the disease’s final stages. Murphy (1986) stated: "In their weakened and vulnerable condition, the inner spirits of persons with AIDS are easily attacked and eroded. There are doubts and fears we all have about our relationships to others and to God. These are often magnified for the dying person" (p. 39). Other authors support the view that through confrontation of death, terminally ill clients find comfort in spirituality (Elkins, 1995; Ingersoll, 1994; Smith, 1993).

Second, according to Yalom (1980), terminally ill clients often express the need to process the issue of hope and its changing status, given their impending death. For many of these clients, an integral connection exists between examination of hope and spiritual issues. Research documents that clients living with HIV/AIDS are no exception; spirituality often becomes a resource for dealing with an otherwise hopeless situation (Carson et al., 1990; Sherr, 1996; Hall, 1994; Lamendola & Newman, 1994; Nelson & Jarratt, 1987). Allowing for instillation of a new kind of hope via the PLWA's faith may thus become an essential aspect of counseling: "Spirituality can be an oasis for both the person with HIV/AIDS and his or her counselor. . . . [H]ope and caring can provide a person with HIV/AIDS a sense of power" (Burke & Miller, 1996, p. 190). Respondents in the study by Kendall et al. (1989) identified positive thinking as a means of coping with AIDS, emphasizing the role spiritual beliefs played in the development of hope. According to the authors, "[T]he way they seemed to regain their psychological balance was to enter a type of spiritual or existential journey toward a further understanding of themselves with their disease" (Kendall et al., 1989, p. 163). Spirituality provided the path that led to hope, not necessarily in finding a cure for the disease, but in obtaining the means of living a positive life, given the PLWA's present circumstances.

A third issue faced by HIV/AIDS clients who are actively grappling with terminal illness involves creation of life meaning. In Yalom's research (1980), terminally ill cancer patients found life meaning by facing the inevitability of their own death. Narrowing the issue to PLWAs, Burke and Miller (1996) noted that "turning to the spiritual dimension may be an attempt to find some meaning and an effective coping style" (p. 188); Nelson and Jarratt's (1987) research on PLWAs showed that "the search for meaning often involves a new or renewed interest in the spiritual self and/or concern for others" (p. 487). Not only is the need for spirituality integrally connected to this search for meaning, many PLWAs paradoxically come to see the disease in a positive way, as providing meaning to their lives by its presence in their bodies. For instance, in Kendall et al.'s study (1989), the authors found that AIDS and its resultant inner search provided a number of respondents "with a different, and more significant, life meaning" (p. 164). Kain (1996) also noted, "Often a remarkable growth can occur when [HIV/AIDS] clients face the limited nature of their lives. Facing death creates a crisis of the spirit; what can result is often . . . miraculous" (p. 108).

In working with the HIV/AIDS population, one of the authors (Holt) encountered this phenomenon as well. A PLWA who had been an intravenous drug user for 20 years was finally able to remain drug-free after receiving the HIV/AIDS diagnosis. As a result of his HIV status, he went on to become a professional "community liaison" with HIV/AIDS drug researchers, and a well-known political activist for PLWAs. As he commented, "Ironically, this disease has given me my life's purpose and at the same time, is taking my life away."

Theme No. 2: Religious Based Disenfranchisement

An issue for clients with HIV/AIDS revolves around societal judgment and religious disenfranchisement. This may be an extremely important and problematic area of spiritual exploration for the client. Graydon (1988), for instance, stated, "As the patient struggles to maintain meaning and hope in his life, traditional sources of support are viewed with distrust and uncertainty. This may be especially true of faith and religion. Past experience, or public pronouncements of condemnation, rejection, and divine punishment from organized religious bodies may reinforce feelings of distrust and exaggerate a sense of spiritual alienation" (p. 68). Murphy (1986) reported the spiritual anguish of one young man with AIDS: "'How can God love me? I am one of His mistakes'" (p. 39). Given the stigma attached to the disease, the spiritual issues that arise for those diagnosed with HIV/AIDS may be particularly intense and shame-producing. The manner in which religious disenfranchisement and societal judgment is experienced may differ for specific subgroups of the HIV/AIDS population, as the following discussion indicates.

Lifestyles and sexual mores of the Gay, Lesbian, Bisexual and Transgender (GLBT) population are often the subject of intense judgment by religious institutions. In one research study of rural community attitudes toward PLWAs, a participant said, "We all know it [the GLBT lifestyle] is a sin. When they came out to demand their rights in government, God stepped in with AIDS. That's how I feel about it" (Preston, Koch , & Young, 1991, p. 121). Housel wrote, "[O]ne of the most powerful forces perpetuating homophobia . . . is the overriding sex phobia that pervades this country and that has been institutionalized in Judeo-Christian religious dogma" (pp. 118-119). Yet this societal attitude has not precluded GLBT PLWAs from embracing spirituality and, in many circumstances, being involved in an organized religion. GLBT individuals are now openly included in many traditional spiritual institutions. Such groups as Dignity (Catholic), Integrity (Episcopalian), Wing Span (Lutheran), the Universal Fellowship of Metropolitan Community Churches and the World Congress of Gay and Lesbian Jewish Organizations have been created specifically for GLBT fellowship (Housel, 1995). However, in spite of efforts to find spiritual and psychological integration, the social stigma surrounding HIV/AIDS and a GLBT lifestyle can result in deep pain and turmoil for some GLBT PLWAs, and may thus be a topic of concern in counseling.

Nontraditional GLBT individuals have sought spiritual connection through yoga, meditation, new age healing, community activism, and twelve-step groups. For those who have chosen a non-religious lifestyle, examining spiritual issues in counseling may still be very important. In addressing the needs of non-religious GLBT PLWAs, Helminiak (1995) argued: "Living with HIV disease provokes life's big questions: How can my life be worth living? . . . Why me? Why this? . . . These are spiritual matters because they concern human meaning and purpose; they touch on the ultimates of life" (p. 301, emphasis added). Helping clients sort through such issues may very well be an important part of counseling work.

GLBT PLWAs are not the only targets of religious persecution. Intravenous drug users, who are statistically and historically the second largest subgroup with HIV/AIDS (Centers for Disease Control, 1997a), are often judged harshly as well. The connection between HIV/AIDS and "immoral" behavior in general has engendered a fury from the religious right, with HIV/AIDS being referred to as "God's punishment" (Carson et al., 1990; Dworkin & Pincu, 1993; Graydon, 1988; Hall, 1994; Kayal, 1985; Murphy, 1986; Nelson & Jarratt, 1987; Saynor, 1988; Warner-Robbins & Christiana, 1989). Otten (1990) has noted, "Because AIDS is . . . associated with homosexuality, promiscuity, and intravenous (IV) drug abuse, . . . issues of sin, alienation, judgment and longed-for forgiveness, understanding, and acceptance [are experienced by PLWAs]" (p. 137). While intravenous drug users share the stigma of HIV/AIDS, personal reactions may be somewhat different from those of GLBT PLWAs. If the intravenous drug user is heterosexual, being aware of the public perception of HIV/AIDS as a "gay disease" may cause anxiety or homophobic feelings to arise. In addition, drug using is seldom talked about and carries a stigma similar to that of being homosexual. Therefore, the intravenous drug user may also need to work out issues surrounding societal and familial judgment. The intravenous drug-using PLWA may also experience shame and guilt about his/her behavior due in part to religious beliefs, which may then become relevant in the counseling setting.

In addition to societal judgment, the PLWA faces potential condemnation on a more intimate level. Familial judgment may be one of the greatest personal tragedies for PLWAs, as well as their loved ones. In a study of 18 PLWAs, researchers found just one respondent who cited the family as a source of support (Richmond & Ross, 1994). Stewart noted in a 1994 study of PLWAs' familial attitudes, "Sadly the stigma and ostracism expressed in over three fourths of the families mirror the stigma and ostracism in society" (p. 334). Many families are confronted with multiple shocks in the case of a child who had never shared his/her sexual orientation with the parents: "Some people find out their son is gay, that they have a lover, that they have AIDS, and that they're going to die all at one time" (Longman, 1994, p. 89). The multiple impacts can often prevent even the most well-intentioned family from being able to adequately assess the situation, and provide support. George (1989) stated that, as a result, such families "may find it easier to talk of their feelings about their son's sexuality with a counsellor [sic] than with the PWA [sic] himself" (p. 86). For heterosexual PLWAs, similar familial issues may arise due to the family's suspicions about how the PLWA became HIV-positive, i.e. through drug use or sexual promiscuity. Often, if the family is willing to enter into counseling, resolution on emotional and spiritual levels becomes possible, and can be essential in terms of helping the PLWA come to terms with his/her death and facilitating healthy grieving for family members. In addition, whether or not counseling directly addresses spirituality, for the PLWA to resolve family issues can be immensely powerful in a spiritual sense: "Familial reconciliation [is] a metaphor for spiritual reconciliation" (Landau-Stanton, Clements, Tartaglia, with Nudd & Espaillat-Piña, 1993, p. 274).

While many families are unable to provide the most minimal levels of support, some families attempt to put aside their prejudices in order to offer much-needed help to the PLWA. One study reported that "more and more persons with AIDS are returning to their families of origin for support and care as their disease progresses" (Preston et al., 1991, p. 110). But such a living situation can put stress on both the PLWA and the family. Often, the PLWA's autonomy and independence are quashed and the differing sets of values can create conflict: "[P]arents may need help in coping with the PWA's [sic] frustration and other strong emotions which can be evoked by such a [living] situation" (George, 1989, p. 86). In addition, such a situation can result in a disturbing lack of regard for the lifestyle choices of the PLWA: "As a result of their concern, parents hinted, coerced, openly requested, or even mildly harassed their sons by asking them to, 'Please put things right with the Lord' . . . For a number of the sons who were growing increasingly weak and vulnerable, giving in to the psychological and moral demands of parents was easier than trying to maintain an independent stance" (Sohier, 1993, p. 481). Finally, a clashing of spiritual values can often result in the family's unwillingness to allow the PLWA's community to be present at the funeral, resulting in an even more complicated grief process for those who have been disenfranchised (Housel, 1995; Longman, 1994; Richmond & Ross, 1994; Worden, 1991a). Clearly the need exists for counselors to act as a sounding board in spiritual issues surrounding the family of origin, particularly for those specializing in family or systems counseling approaches.

Data on women living with HIV/AIDS indicate alarming trends. A special issue published by the Centers for Disease Control and Prevention (1997b) devoted to women, reported the percentage of women with HIV/AIDS has nearly tripled since the disease's beginnings, rising from approximately 7% in 1985 to 20% in 1996. In approximately the same period, the statistics on male PLWAs dropped from 92% to 85% (Centers for Disease Control, 1996; U.S. Bureau of the Census, 1996). In addition, HIV/AIDS is now the third leading cause of death in the United States for women 25 to 44 years old, and the leading cause of death among Black women in the same age group (Centers for Disease Control, 1997b; Solomon, Moore, Gleghorn, Astemborski & Vlahov, 1996). Female HIV-positive clients may be confronted with a number of unique circumstances concerning spirituality in the therapeutic setting. First and foremost, as noted above, HIV/AIDS is associated with what some consider "immoral behavior" (Dworkin & Pincu, 1993). Therefore, female clients may be dealing with shame, particularly around sexual issues. It is notable that "[t]he current AIDS epidemic in Europe and North America has . . . focused attention on prostitutes, despite the dearth of evidence on their role as vectors of disease" (Carr, 1995, p. 201). The public continues to regard women with HIV/AIDS as an anomaly, one that can be explained as the result of sexually promiscuous behavior. Yet, besides intravenous drug use, the most common means of HIV transmission for women takes place in the context of a monogamous relationship (Campbell, 1995; Carr, 1995; Cohan & Atwood, 1994; Shevitz, Pagano, Chiasson, Mueller & Thomas, 1996; Smeltzer & Whipple, 1991; Solomon et al., 1996; Walker, 1991). Walker (1991) comments: "Perhaps the most misleading to women has been the AIDS education theme that in monogamy lies safety, since so many of the non-drug-using women who have contracted HIV sexually are the long-term (heterosexual) partners or wives of HIV-positive men" (p. 54). The Centers for Disease Control and Prevention (1997c) reported, "The largest proportionate increases in prevalence occurred [in 1996] among men and women who acquired AIDS through heterosexual contact (28% and 23% respectively), the only risk/exposure category that experienced increases in AIDS-OI [opportunistic infection] incidence" (p. 865). Yet society may still consider HIV-positive women to be promiscuous. This "blame the victim" mentality can result in deadly consequences for women with HIV/AIDS, because anxiety and denial about this disease may prevent them from obtaining medical help (Cohan & Atwood, 1994). The deeper issues preventing women from getting help--shame and guilt--could be argued to have their roots in religion; women are supposed to remain "pure and untouched." Perhaps because of this religious message, women with sexually transmitted diseases such as HIV/AIDS may be judged far more harshly than men. Therefore, counselors need to be aware of the underlying issue of "immorality" when working with female PLWAs. Such clients may need to work through stereotypical religious judgment in favor of a deeper, more accepting spiritual grounding.

Youth appear to be one of the fastest growing, and most troubling, populations with HIV/AIDS (Dworkin & Pincu, 1993). For instance, between 1988 and 1994, one source indicated that "[c]ases of adolescent AIDS increased by 330%" (Forsberg, King, Delaronde, Geary , & The Haemophilia Behavioral Evaluative Intervention Project Committee, 1996, p. 629). Given this alarming trend, it is important to consider youth's unique counseling needs. Although the diagnosis of a life-threatening disease is devastating for individuals of any age, for youth it may be especially overwhelming. To learn that one's life is going to be drastically shortened at a time when independence and autonomy are just beginning to be asserted can create tremendous depression, anger, anxiety and hopelessness. Some evidence indicates that spiritual concerns increase with age (Worthington, 1989), thus a diagnosis of HIV/AIDS may force youth to deal with spiritual issues prematurely. Many young PLWAs experience denial of the disease (Dworkin & Pincu, 1993; Feldman, 1989). Thus, spiritual issues may be ignored completely as a part of this denial process. With reference to counseling, PLWA youth may not have the emotional skills and maturity to adequately cope with their diagnosis and counselors should respect this. A special supplement of the Journal of Adolescent Health entitled "Guide to Adolescent HIV/AIDS Program Development" (1993) noted, "It is important to allow the teenager to discuss his or her feelings openly and without criticism" (Module Four: Psychological . . ., 1993, p. 53S). No sources were found concerning spiritual aspects of counseling terminally ill youth, despite the fact that evidence suggests spirituality is a primary consideration when youth think about death and its implications (Morin & Welsh, 1996). Morin and Welsh (1996) found this may be especially true for African-American youth (see Theme No. 3).

In counseling HIV-positive youth, feelings of guilt and blame may arise, often related to religious beliefs about having "sinned" by having premarital sex and/or same-gender sex (Module Four: Psychological . . ., 1993). It is also possible for young people to experience a sense of being "punished" by God (Stricherz & Cunningham, 1981-1982). Therefore, an important part of counseling may include helping the younger HIV/AIDS client develop a healthier self-concept, including working through religious beliefs about sexual behavior. In addition, adolescents may not yet be able to adequately conceptualize death and its implications. One source stated, "Adolescents, many of whom lack the capacity for abstract thought, have fixed infantile ideas of what death is. Any discussion of death should be preceded by a thorough exploration of the youth's preconceived notions about dying" (Module Four: Psychological . . ., 1993, p. 58S). Youth may also experience spiritual isolation and confusion around spiritual issues, if they do not have a spiritual or religious community to turn to for support. Thus spirituality may be an important topic in counseling, as the young PLWA attempts to make sense of this disease, a shortened life span and the subsequent impact on his or her life in terms of meaning and purpose.

Theme No. 3: Multicultural Spiritual and Religious Issues

Multicultural spiritual beliefs and practices are extremely important to consider, given the high percentage of ethnic minorities affected by HIV/AIDS. In the United States, African-Americans and Hispanics currently comprise approximately 75% of all women and 48% of all men with HIV/AIDS (Centers for Disease Control, 1996); and "AIDS rates for black and Hispanic women are 17 and six times higher than for whites" (Centers for Disease Control, 1997b, p. 2). In many minority cultures, the connection to family and community is very important; religious communities often are an integral means of support and solidarity for the individual. Therefore, spiritual issues are likely to arise in counseling. In the book AIDS, Health, and Mental Health, Landau-Stanton et al. (1993) elaborate: "Appreciating the role of religion in the life of African-Americans begins with the recognition that the church has been historically the only institution 'owned' by the African-American community. . . . The church has been a key component of this group's extended family concept" (p. 281).

Multicultural issues for PLWAs are inextricably connected with those of women. As stated earlier, female PLWAs may be labeled as prostitutes or immoral, and this appears to be particularly true in African-American and Hispanic cultures (Weeks, Schensul, Williams, Singer , & Grier, 1995). While such stigmatization is unfortunate for all women, it has been noted that women of color are more likely to rely on their spiritual community in times of trouble (Landau-Stanton et al., 1993). Unfortunately, individual or group judgment from religious sources may result in the PLWA's estrangement from their spiritual community, and a double stigmatization can be experienced by such PLWAs.

Ironically, religious mores can also prevent women of color from practicing behaviors that would help prevent infection of HIV. Weeks et al. (1995) pointed out that the Catholic church's stated position forbids the use of condoms during intercourse. Therefore, unprotected sex practices are inadvertently "reinforced by the teachings of the Catholic church, the predominant religion of Latinos" (p. 254). Cohan and Atwood (1994) supported this finding with the observation that "culturally defined gender roles and rules that prohibit the use of birth control, may impinge on [Hispanic women's] ability to negotiate safer sexual practices with their partners" (pp. 8-9). Thus, women of color may become more vulnerable to HIV/AIDS as a result of religious beliefs. Their religious communities, meant to be havens of comfort and succor, may deny them real and symbolic refuge in the midst of their troubles. The role of the counselor may include providing comfort and support for such clients and in some cases, alternative spiritual resources may wish to be explored.

Counseling Implications and Recommendations

There are a number of excellent resources covering general counseling strategies for PLWAs and their families, friends, loved ones and caregivers (Dworkin & Pincu, 1993; George, 1989; Green & McCreaner, 1996; Landau-Stanton et al., 1993; Tallmer et al., 1990; Winiarski, 1991). This article, however, has limited itself to a discussion of spiritual issues which may arise in counseling the HIV/AIDS population. Several suggestions follow regarding spiritual wellness issues and HIV/AIDS clients.

It is incumbent upon the counselor to work through and address countertransference issues regarding HIV/AIDS clients and spirituality, in order to prevent the work from being impeded. One issue that may arise for counselors concerns personal anxiety about death and dying, and the related spiritual implications (Dworkin & Pincu, 1993; Sherr, 1996; Hover-Kramer, 1988; Otten, 1990; Smith, 1993). This can be revealed as an avoidance of the topic in sessions, or conversely, an over-focusing on death as an attempt to relieve inner anxiety (Sherr, 1996). Counselor anxiety about death and dying can also result in denial of client feelings. Winiarski (1991) has stated: "One counselor, upon seeing a very sick patient, immediately began saying, 'Don't worry. Everything will be all right.' . . . This does nothing to alleviate the client's worries, which may be firmly based in his or her situation" (p. 52). If the counselor feels unqualified to help the client process such questions, that should be made clear as gently as possible, and a referral provided. Burke and Miller (1996) concur, commenting on the effect of counselor-based fear: "The [counselor's] fear and denial associated with HIV/AIDS and death-related concerns may limit the effectiveness of counseling" (p. 186).

A related issue concerns possible impatience with, and judgment toward, clients in denial about death. Green and Sherr (1989) reported, "It is interesting to note that it sometimes seems to be the professionals who find 'denial' more distressing than the patient" (p. 209). One of the authors (Holt) has dealt with this issue, in working with HIV/AIDS clients. In trying to achieve the highest actualization for the client, both spiritually and emotionally, there may be a tendency to try to push beyond where the client is ready to go. Indeed, HIV/AIDS clients are no exception to the counselor's general clientele: in many cases, clients may not extend themselves beyond surface concerns and palliative support, and the counselor needs to be accepting of this. In addition, just because the PLWA does not wish to process spiritual and/or death and dying concerns in counseling does not preclude the development of a rich and deeply rewarding counseling experience, and may not indicate denial. In some instances, however, a client's denial may be obvious to the counselor. However, this avoidance of the topic of death may serve a very useful function, at least initially: "[D]enial often acts as a mechanism to allow the person to absorb the information and prepare emotionally to face what lies ahead . . . It may be necessary to allow the client to slowly come to terms with feelings such as fear and anger and neither rush insight nor push immediate recognition of the entire situation" (Dworkin & Pincu, 1993, p. 276).

Another counter transference issue involves judgment about clients' sexual mores, lifestyle choices or drug-using habits. Dworkin and Pincu (1993) stated, "[G]iven that the hardest hit population so far has been gay men . . . [t]he therapist must explore his or her own attitudes toward gay and lesbian life-styles" (p. 275). Counselors' homophobic feelings, or value judgments concerning promiscuity or drug use, will almost certainly be communicated implicitly to the client, and could result in significant damage (Burke & Miller, 1996; Dworkin & Pincu, 1993). Beginning the process of rebuilding the client's self-esteem is essential, as Dworkin and Pincu (1993) have noted, "It is particularly important for the HIV-infected person to internalize a positive self-concept and shed the stigmas that are associated with the illness" (p. 277). If counselors have such strong negative beliefs about the lifestyle choices of PLWAs that it impedes their counseling, it is imperative to refrain from working with such clients. Counseling needs to be a "safe haven" for all clients; negative personal judgments impede the counseling process. If a counselor believes the PLWA's lifestyle is "immoral," then to work with this population is unethical.

Differing religious beliefs between counselor and client constitute a fourth counter transference issue. Smith (1993) commented, "[T]he counselor must exercise restraint so as not to impose his or her own theology on the patient, and the counselor must strive to totally accept the patient's belief system, whatever that belief system might be" (p.72). Spirituality is highly personal and often results in strong feelings and intense opinions. For example, a hypothetical situation might involve a born-again PLWA who believes God is punishing him/her for this disease and his/her redemption requires repentance of his/her sins. While a counselor may view this as unhealthy or harmful, to reject such a belief could result in alienation, especially if the counselor also attempts to impose his or her own spiritual values. "Not only does a counselor not give a theology to a client, but just the opposite is to be the case: The counselor is to receive the theology of the client in a non judgmental attitude of acceptance" (Smith, 1993, p. 72).

Winiarski (1991) recommended making a thorough assessment of HIV-positive clients. An important part of this assessment should include exploring the client's spiritual (and religious) history. This will clarify possible sources of client anxiety and distress. In addition, such an assessment will help to identify other spiritual sources of support in the PLWA's community and can facilitate building a network of support for the client (Landau-Stanton et al., 1993; Perelli, 1991). This spiritual assessment could be done during the initial intake, or take place in another session during the beginning stages of counseling. Possible questions to ask might include: "What are your spiritual beliefs?" "Do you belong to a particular religious institution?" "What role does spirituality play in your life?" "What effect has a diagnosis of HIV/AIDS had upon your spiritual outlook?" "Are there any individuals whom you turn to for spiritual guidance?" "What are your family of origin's religious beliefs?" "Are there any issues in the realm of spirituality and religion that you would like resolved?"

Certainly the counselor should remain aware of the degree of relevance this topic has for each client individually and proceed accordingly. For some clients, spirituality is not an immediate concern and one or two questions will suffice; however, spiritual issues may arise in later sessions. For other clients, having the freedom to discuss spiritual and religious doubts or fears may require several sessions and become a main focus of counseling work. In such cases, discussing spiritual conflicts, long-held guilt feelings, and/or negative belief systems may be a cathartic and deeply healing experience (Landau-Stanton et al., 1993).

A supportive atmosphere created in counseling is a microcosm that can have far-reaching effects on the PLWA's life. "[T]he therapist represents mother and father, neighborhood and society--the embodiment of a community that validates and appreciates the individual. It is the therapist's accepting stance that permits the new connection" (Winiarski, 1991, p. 56). In fact, Helminiak (1995) suggested that in the case of non-religious PLWAs, the counselor may actually serve the role of spiritual advisor: "[I]ndividual psychotherapy may sometimes be the contemporary version of traditional 'spiritual direction' or consultation with the religious leader, the holy man or woman, the guru" (p. 316). And Hedge (1996) has stated, "With the realisation [sic] that life may be curtailed by an AIDS-related death, it is not uncommon to find an increased interest in mortality and spiritual issues even in those who have previously ignored religion. Counsellors [sic] are often chosen as suitable people with whom to air these topics as they are not professionally aligned to any particular belief system" (p. 77). An openness to, and acceptance of, spiritual concerns on the part of HIV/AIDS clients will therefore be an important consideration for counselors.

Given that research indicates hope to be an important tool in the lives of PLWAs, the counselor's work may include encouraging the PLWA to develop a sense of purpose or the instillation of hope. As George (1989) stated, "It is important to empathise [sic] with feelings of hopelessness whilst giving reassurance about how things can change. . . . The aim is to maximise [sic] the quality of life in a realistic way" (p. 77). Spirituality may be an integral component of the PLWA's life purpose in the face of HIV/AIDS, and therapeutic skills such as empathy, emotional support and active listening can assist this process. Clients will differ, however, in their definition and working through of issues surrounding life purpose, and hope. This may involve coming to a deeper peacefulness, or acceptance about untimely death. Such a state of acceptance does not, however, preclude other goals, such as assisting the client in retaining a "fighting spirit," a healthy self-esteem and an appropriate degree of assertiveness in pursuing life-affirming goals. Remaining hopeful about life should not be taken negatively or seen as a form of denial, particularly given the recent advancements in HIV/AIDS treatment (Beaudin & Chambre, 1996; Centers for Disease Control, 1997c). Learning to live with such an illness is a complex process, and ideally, all the various feelings and emotions of the PLWA will be accepted and honored. "Perhaps what clients, and therapists, actually experience are complicated admixtures of acceptance and hope" (Winiarski, 1991, p. 56).

Each person affected by HIV/AIDS, including PLWAs, their families, friends, loved ones and caregivers, will most likely experience multiple losses. First, the debilitating nature of the disease results in a series of physical losses, as the immune system of the PLWA becomes increasingly weakened. Numbness of extremities, headaches, dementia, night fevers, constant aches throughout the body and detrimental changes in appearance such as hair loss are just some of the physical problems which gradually limit the PLWA's life (Worden, 1991b). Second, many emotional losses will be experienced, such as those associated with career expectations and the prior anticipation of a normal life span. Also, those intimately connected to the PLWA must face the actual, impending death as well as the metaphorical death of any hopes and future expectations in their relationship to the PLWA. For instance, Nord (1996) commented, "[W]hen parents lose a [child] to AIDS they are not only losing a [child] but also their future expectations related to the [child]'s life and the expectation that their child will outlive them" (p. 390).

Given society's tendency to downplay and disenfranchise the relationships of GLBT PLWAs, it is also important to note that for many such PLWAs, the parents and/or extended family have ceased to be a significant part of their life, and the GLBT community created by the PLWA is far more important to acknowledge in counseling. In addition, the lovers of GLBT PLWAs deserve every consideration accorded to a heterosexual spouse and, if the PLWA wishes, should be included in as much of the decision-making processes surrounding counseling as possible.

Perhaps the most important way multiple losses are experienced for PLWAs and their extended communities concerns the multitude of deaths. There are two communities which have been affected more profoundly than any others: the GLBT community and the inner city poor (Ward, 1993). For such communities, death from HIV/AIDS has become a commonplace occurrence for its members (Bidgood, 1992; Nord, 1996). Multiple loss survivors understandably often believe they will never completely finish the grieving process (Nord, 1996). Bereavement overload is thus a common occurrence: "The compounding impact of surviving multiple AIDS-related deaths complicates the resolution of grief because there is insufficient time between deaths to work through the grief process before another death occurs" (Nord, 1996, p. 393). The impact of this on counseling sessions is very important. As a result, a variable period of numbness accompanied by lack of emotional affect is entirely appropriate, given the possibility of multiple and disenfranchised grief issues. In fact, expectations that such clients will be able to adequately resolve their grief issues may be unrealistic (Kübler-Ross, 1969; Nord, 1996; Worden, 1991a). In addition, clients should be encouraged to recognize that grieving the death of a loved one is a very important way of honoring their memory; but a balance needs to be struck between obsessing over the lost one(s) and maintaining a healthy memory. Ritual, spiritual or otherwise, may play an important role in assisting the grieving process.

Entire families are often living with the disease. In some cases, one or both parents are infected, and the infection has been transmitted to the children. Enormous feelings of loss and guilt are experienced as the family attempts to cope (Captain & Selder, 1990; Sherr et al., 1993). In such circumstances, family counseling may be an avenue of healing and processing, including work in the spiritual domain. Utilizing spiritual resources in the community, such as a chaplain or spiritual counselor, may also be helpful (Landau-Stanton et al., 1993). In general, for clients or families dealing with multiple HIV/AIDS losses, a questioning of faith or bitterness toward a higher power may be a major part of counseling. Therefore, it will be important to create an atmosphere of trust and acceptance, where such feelings are honored and if not resolved, at least understood and validated.

Closely related to the concept of bereavement overload, disenfranchised grief involves a lack of validation for the griever(s) of the PLWA. This phenomenon is most common for GLBT PLWAs and their GLBT lovers and friends (Corr, Nabe , & Corr, 1994; Housel, 1995; Worden, 1991b). One of the most concrete examples of denying the PLWA's alternate lifestyle and community concerns funeral arrangements, where the family may refuse to allow friends of the PLWA to be a part of the funeral due to prejudice and/or denial about the PLWA's lifestyle. This unwillingness to acknowledge GLBT community members may stem from religious beliefs in the "sinfulness" of such a lifestyle, and thus is directly related to spiritual and religious issues in the counseling process.

Disenfranchised grief can also play a role in inheritance matters. A gay male friend of one of the authors (Holt), who was the primary caregiver for a gay male PLWA in his last years of life, repeatedly called the PLWA's family for help while the PLWA's health and spirit slowly deteriorated. The family, devoutly Christian, refused to visit or extend themselves, having apparently disowned the PLWA many years ago due to his gay lifestyle. Yet after his death, the family contested the will, which was to have left all his possessions to GLBT friends. The primary caregiver was understandably very angry and upset, especially given the family's "Christian" values. This lack of compassion and validation further exacerbates the grief that is already being experienced. Many counselors would agree that the expression and processing of emotions is a very important element of counseling. Given the fact that the loved ones of GLBT PLWAs may not have many outlets through which to express their feelings, the counselor can play an important role, acknowledging the relationship to the deceased and providing "permission" for the grieving process.

Serving as a listener and sounding board will of course be one of the counselor's main roles when working with HIV/AIDS clients struggling with spiritual issues. This should be distinguished from proselytizing or offering personal opinions or advice: "The specific spiritual needs of PWAs [sic] can be identified only by PWAs [sic] themselves" (Warner-Robbins & Christiana, 1989, p. 44). However, it is certainly appropriate to bring up the issue of spirituality and ascertain the client's interest in examining his or her own beliefs. As Hover-Kramer (1988) stated, "[C]aregivers ponder what to say to patients about life after death. In the past they have perhaps been too vague about their beliefs for fear of challenging others' religious convictions. Yet, people in the final stages of life are spiritually hungry" (p. 9); Kain (1996) noted, "[W]e may find that spirituality plays a much bigger role in clients' lives than even they recognize" (p. 108).

However, caution is necessary. Spiritual concerns may not be an important area to explore for many clients. For a variety of reasons, PLWAs may not be interested in the spiritual realm, having never embraced any kind of religion or having turned their back on spirituality as a source of support. On the other hand, the PLWA may be secure and comfortable with his/her spiritual path and have no desire to explore this in counseling. In addition, clients struggling with survival issues such as extreme physical or mental debility may not have the energy to engage in reasoning processes that extend beyond practical matters (Maslow, 1968; Winiarski, 1991), and counseling will be focused on more immediate needs. In any case, spirituality may provide the counselor with a grounding of support and sustenance for HIV/AIDS clients at all stages of the disease, particularly those near death. "A . . . spiritual need is to die appropriately. This means dying in a way consistent with one's self-identity. There is no one, right way to die. Not everyone has to 'accept' death. . . . [E]ach person will define an appropriate death differently" (Doka, 1989, p. 132). To provide the PLWA with non judgmental acceptance, and permission to live, and die, as they wish, can be considered a spiritual process in and of itself.

Counselors will want to keep in mind the spiritual needs of clients in differing stages of the disease. New medications have increased the life expectancy of some PLWAs to the point that HIV/AIDS is now being called a "chronic illness" (Beaudin & Chambre, 1996; Centers for Disease Control, 1997c). Given the lengthening life of PLWAs, those in the early stages of the disease may not be interested in, or willing to consider terminal illness issues. On the other hand, at least two sources indicated death and dying issues may come to the forefront in the earlier stages of this disease: "People with AIDS often find it easier to discuss death and dying fairly early on in their illness, while they are relatively well, when they can realistically address these as issues for future concern" (Hedge, 1996, p. 77). Housel (1995) concurred: "The very diagnosis of AIDS demands an often rapid spiritual readjustment and alteration in the person's way of being in the world" (p. 123).

A systems approach to counseling for PLWAs can be very useful, in which as many resources in the client's community system as possible are utilized (Landau-Stanton et al., 1993; Perelli, 1991). This applies to the client's spiritual community as well. For those affiliated with a particular religious tradition, counselors may encourage the client to find a chaplain or clergy person to consult as a spiritual resource. This individual might be utilized by the PLWA on a regular basis, in addition to attending counseling sessions, and/or the clergy person could attend some counseling sessions as well. If the client is not affiliated with a spiritual community, other sources of support can be provided. Landau-Stanton et al. (1993) have elaborated upon various spiritual choices: "[A] religious figure's symbolic intervention of confession, forgiveness and penance might be appropriate. For clients who do not draw upon religious resources . . . referral could be made to a 12-step fellowship program. Alternatively, referral for family counseling might incorporate the principles of repentance and reparation" (p. 269).

Green (1995) found that PLWAs were far more likely to seek assisted suicide than the general population. In his study, approximately 33% of all respondents (all PLWAs) considered euthanasia as possible means of terminating their life. Given the fact that a third of those living with AIDS may consider euthanasia a viable option, it is very important for the counselor to determine the legal, moral and spiritual issues and ramifications, for themselves as well as their clients. Consequently, for those PLWAs who are seriously considering such an option, their loved ones are usually made aware of such a plan, and may even be asked to assist in the act. As such, family and other loved ones may also seek counseling.

HIV/AIDS counseling issues involve more than the PLWA. For each PLWA, there are several individuals affected by the disease, including caregivers, significant others, friends and family members (Nord, 1996). Such clients bring their own sets of unique problems to counseling, including grief about the impending death of someone they love and care about, and guilt about being HIV-negative in spite of possibly engaging in similar risky behavior. And, just as the PLWA may struggle with deeply spiritual questions, these loved ones struggle with similar issues (George, 1989; Rice, 1990). This group may also experience anguish, anger, and helplessness about the pain and suffering they see their loved ones going through, particularly PLWAs dealing with the final stages of the disease. Thus, it is possible that spiritual and religious issues will arise, as families, friends and caregivers attempt to reconcile the reality of HIV/AIDS with their underpinning beliefs.

Research Implications

The issue of spirituality can play a central role in the lives of many PLWAs and may enter into the counseling relationship. In order for counselors to become better prepared to help this population, more research is needed in a number of areas. First, the spiritual needs of specific populations within the HIV/AIDS community are important to examine. Youth, for instance, appear to have a unique developmental perspective concerning spirituality and yet this topic has not been a primary focus of research, for young terminally ill clients in general, and for HIV-positive adolescents and young adults in particular. Also, while a number of articles have examined spirituality and GLBT PLWAs, the significance of spirituality as a resource for ethnic minority PLWAs deserves increased attention.

In addition, given the disease's new status as a chronic illness, the counseling concerns of PLWAs may indeed be shifting, and certainly spiritual issues can be expected to be affected by such a shift. Research to examine the long-term emotional effects of an HIV/AIDS diagnosis, specifically, its impact on clients’ personal and spiritual development, as well as counseling needs, would be helpful.

Finally, the need exists for more counselor training regarding inclusion of spiritual issues in general, and in counseling PLWAs in particular. Burke and Miller (1996) have concurred on the latter: "Counseling skills that are adequate for work with other populations may be too fragile and too shallow to endure the intensity and depth of focus often found in therapy with people with HIV/AIDS" (p. 189). Therefore, training sessions to delineate the needs of such clients and to address common counter transference issues are warranted. (See Britton, Cimini, & Rak, in press, for an example of a training model.)

Conclusion

Working with PLWAs can be a complex experience and spiritual aspects are only one facet of an extremely intense process. Counselors are encouraged to continue to explore resources in dealing with this population. The rewards can be immense, as the HIV/AIDS client begins to trust and value a counseling process which is inclusive of spiritual needs. Investing in this process can also be reflected in the counselor as well, who may become deeper and richer, professionally and personally, as a result of being available to the spiritual concerns of the PLWA. As Kain (1996) has noted, "At times we may be surprised to find that when we provide clients with the room to pursue spiritual matters, accelerated psychological growth often occurs. This makes sense, for in many ways and in many cultures, there is no distinction between psychological and spiritual growth" (p. 117).

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