Spiritual and Religious Experiences of Gay Men With HIV Illness

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Spiritual and Religious Experiences of Gay Men With HIV Illness Debra L. Seegers, PhD, APRN-C

A total of 10 gay men with symptomatic HIV illness defined “religion” and “spirituality” and explored their experiences in a transcendental phenomenological study. Themes essential to participants’ experiences were (a) spirituality was experienced as a dynamic, evolving, reciprocal relationship with oneself, God, or a universal spirit; (b) participants developed an identity of self in relation to church through the creative resolution of dissonance between institutionalized prejudice in the church and the lived gay Christian experience; (c) spirituality was expressed through religious practices; (d) experiences of religion and spirituality were intertwined with family relationships; (e) religious experiences were perceived as more important to spiritual satisfaction than experiences defined as spiritual but not religious; and (f) for African American participants, the traditions and practices of the Black church were the foundation of spiritual and religious experiences. A total of 8 participants identified others’ negative responses to their homosexuality as social problems that affected their behavior in formal religious settings but not self-acceptance. Key words: Black church, church, gay men, HIV, religion, spirituality

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his transcendental phenomenological study explored spiritual and religious experiences among adult gay men with symptomatic HIV disease. Initial questions for this research were as follows: How do gay men with HIV disease experience their spirituality? What spiritual or religious practices do gay men with HIV disease describe? Do gay men with HIV disease have special needs related to the reli-

gious practices and experiences of their childhood and their families of origin? Are their spiritual needs met to their satisfaction through their spiritual and religious practices?

Background This researcher’s interest in exploring the meanings of spiritual and religious experiences among gay men with symptomatic HIV illness began during a graduate school family nurse practitioner program rotation in an infectious disease clinic in 1997. The clinic was located in a mid-sized city in a southern mid-Atlantic state and served clients from across the state. The clinic’s clientele reflected the population of people infected with HIV/AIDS: homosexual and heterosexual men, women, and children, with African American and indigent people disproportionately represented. When clients with HIV symptoms were asked what helped them, they often talked about their church, prayer, God, the Bible, Jesus, meditation, “trying to stay healthy,” being in nature, doing volunteer work, attending 12-step groups, their relationships with friends, and caring for their pets. This researcher wondered how gay men in particular found supports in their church and religious community and whether heterosexism, homophobia, or social stigma associated with HIV infection affected their spiritual and religious experiences. A review of the nursing research literature of the late 1990s and Debra L. Seegers, PhD, APRN-C, is a professor of nursing at Southside Regional Medical Center School of Nursing, Petersburg, VA.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 18, No. 3, May/June 2007, 5-12 doi:10.1016/j.jana.2007.03.001 Copyright © 2007 Association of Nurses in AIDS Care

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early 2000s indicated that gay men with HIV illness might well be alienated from mainstream churches and that such men might develop adaptive, nontraditional patterns of spiritual and religious expression. In their responses to questions asked during routine care, clients did not indicate that this was true for them. Both White and African American gay male clients most often described their involvement in traditional religious practices as their main form of religious and spiritual expression and support. Their experiences were, in fact, very much like this researcher’s own experiences as a woman who was active in a traditional Christian church. In 1999, nurses in AIDS care identified HIV/AIDS nursing research priorities for the coming millennium (Sowell, 2000). Among the priorities for future research were quality of life issues in chronic HIV disease. Numerous studies support the presence of relationships between quality of life and symptoms among patients with HIV infection or AIDS (Cochran & Mays, 1994; Coleman, 1996; Coleman & Holzemer, 1999; Koenig, 1991). Other studies identify dimensions of spirituality as contributing to their quality of life (Coleman & Holzemer, 1999; Hall, 1998). Empirical results indicate that spirituality has benefits for mental and physical health (Coleman, 2000; Tuck, McCain, & Elswick, 2001). Studies indicate that the social stigma attached to HIV disease alienates some gay men from mainstream religion, and gay men with HIV illness may be deeply ambivalent about the impact of religion in their lives (Barroso & Powell-Cope, 2000). Carson and Green (1992) proposed that churches offer a vengeful, spiteful, rejecting God and that acceptance of such a God would require self-rejection among gay men. A study by Richards, Acree and Folkman (1999) described culturally unique death rites in the San Francisco gay community, reflecting the evolution of nontraditional religious practices among HIVinfected gay men and their partners. Hall (1997) reported that participants in her studies looked for reassuring answers for themselves about what would become of them after death and then were able to “move on to develop rituals and practices that reminded them that life is good and that they are part of it” (p. 84). Expressions of spirituality were personal and idiosyncratic but grounded in religion, “a

fundamental belief structure from which to work” (p. 84). African American men with HIV and AIDS have discussed their perceptions of the importance of their church, especially their childhood church, to their spiritual and religious development and experiences. In Miller’s (2000) study of the meaning of spirituality among African American gay men living with AIDS, participants reported that their spirituality originated in their family and local church and that they withdrew from their childhood church during their individuation as gay men. Miller saw the church as the agent of spiritual formation for African American men and the loss of connection with the church as a psychic wound. Of African American participants in one study of the contribution of spiritual well-being and HIV-related symptoms to psychological well-being, 60% described church as their influential spiritual environment (Coleman & Holzemer, 1999). This result is of particular interest in light of some views that the African American church has often remained remote from the needs of persons with HIV/AIDS because of stigma, resistance, and denial of the disease, despite the high incidence of HIV and AIDS in African American communities (Miller, 2000; Swartz, 2002). Problem Statement Although much has been written about the value of spiritual and religious beliefs and practices for ill people, little research has explored the specific meanings of spirituality and religion in the lives of gay men with HIV illness. Gay men with symptomatic HIV illness may have different religious or spiritual practices and beliefs from those of heterosexual people who are not ill. Stigma and alienation from traditional, familiar religious communities may lead gay men with HIV illness to develop alternative spiritual or religious experiences or practices or to develop nonreligious but spiritual beliefs. Identification of appropriate spiritual supports for gay men with HIV illness is important to applying useful nursing interventions to address spiritual distress.

Seegers / Spirituality of Gay Men With HIV Illness

Method Design Transcendental phenomenological methods (Moustakas, 1994) guided the research process. This research method permitted the researcher, a person with an intense interest in a phenomenon, to explore it in depth with others who shared the interest but differed from the researcher in other important characteristics. The researcher was a White, heterosexual woman, Catholic, married mother, nursing instructor, and family nurse practitioner. The researcher’s interest in spiritual and religious experience was deeply personal, as was the interest of participants in this study. Epoche, an ongoing, reflective process akin to empirical phenomenological “bracketing,” preceded each phase of research, including interviews, story writing, and validation of the accuracy of representation of each participant’s experience in his stories. The epoché process allowed the identification and recognition of prejudgments, biases, preconceived ideas, and similarities and differences between the researcher’s experiences and those of the study participants and to return repeatedly to the participants for clarification concerning ways in which the researcher’s understanding of her own experiences illuminated or obscured understanding of theirs. The stories that emerged from the data were, then, the participants’ stories, collaboratively corrected to remove incorrect assumptions that might have obscured the stories’ meanings. Data were analyzed line by line and reduced to essential units containing moments necessary to understanding the experience. Each participant’s data produced three stories: a textural story, a structural story, and a synthesized textural-structural story. The participant’s textural story described his interwoven cognitive and sensual perceptions. It included verbatim examples of the participant’s experience. Imaginative variation, a reflective process of examining the many ways of interpreting each participant’s description of his experience, followed creation of each textural story. For instance, participant Dante described his experience of feeling excluded as follows: One of the things I know about myself, I’m a loner. I tend to isolate, even in a setting. Although

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that’s normal for me, it’s not always so comfortable. That’s all because of the religion and spirituality piece. So having come up in a very strict or structured religion, and then having been gay, and now being HIV-positive, or having AIDS, that’s a very isolating disease in and of itself. Dante described his discomfort with his habitual behavior and with his perception of being isolated from others, not by choice, but because of his stigmatizing conditions. Imaginative variation provided a means of looking at these aspects of his experience from different perspectives. For instance, what would this experience have been like for Dante if it had occurred in 1979 instead of the 1990s? How might it differ if his early childhood religious experiences had been joyful rather than restrictive? How might Dante have perceived this experience if he were older? Younger? Of a different race? Would it have changed according to whether he was in church, a dance club, a college classroom, a foreign country? If so, how might Dante have described his experience differently? Universal characteristics, or structures, identified during imaginative variation contributed to each participant’s second story, a “structural” story that identified the underlying themes that accounted for the participant’s perception of his experience. Each participant’s feelings and thoughts served as exemplars of the structures of his experience. A third story synthesized individual participants’ textural and structural stories. Finally, a single story integrated composite textural and composite structural descriptions into a thick description of the meanings and essences of the spiritual and religious experiences of all participants. Validation of the accuracy of the stories’ representation of the participants’ experiences took place through reassessment of identified invariant constituents against the records of each participant to ensure that the constituents were explicitly expressed and compatible with the data and through reengagement with participants to review and discuss the data and resulting stories. Each participant who participated in second or third interviews confirmed that identified invariant constituents of his story were present in or compatible with his interview content. The institutional review board of Virginia Commonwealth University provided authorization for the study, which

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was partially funded by the Stokes Doctoral Fellowship Grant. Subjects Participants responded to flyers and word of mouth information distributed by researchers working with people diagnosed with HIV infection and AIDS and to flyers posted at a free clinic where people with HIV illness and AIDS received treatment. Recruitment efforts began in 2003 and ended in 2005. They focused on recruiting adult gay men with symptomatic HIV illness who were interested in discussing their spiritual and religious experiences. During the recruitment period, only 13 men asked to enter the study. Recruitment ended when no further participants responded to recruitment efforts. A total of 10 gay men with symptomatic HIV illness entered the study. They participated in face-to-face audiotaped interviews concerning their spiritual and religious experiences. Interviews lasted 1 to 3 hours and were transcribed verbatim. Handwritten field notes were also transcribed and included as data. Recruitment efforts did not focus on enlisting members of a particular racial or ethnic group. However, 8 participants identified themselves as Black, 1 as Black/African American, and 1 as Native American. A total of 3 were in relationships with male partners, 3 were separated from male partners, 2 were single, 1 was married but separated, and 1 was married to a female partner. The mean age of participants was 46. They ranged from age 33 to 62. Only 1 participant worked full time. A total of 7 received disability income. There were 2 who neither worked nor received other income. All participants had health-related HIV symptoms, and 8 had AIDS-defining symptoms. In all, 8 participants regularly attended Christian churches, 5 participants attended churches at least twice monthly, and 4 attended church more than once a week. There were 2 who were not church members. Of these, 1 attended various churches at different times. Only 1 did not attend church and did not plan to attend a church. There were 3 men who applied to the study, completed consent and preliminary study forms, and participated in interviews for which they were eligible according to the information they had provided.

Their data were excluded from the study when it emerged during their interview that they did not meet the study criterion of having symptomatic HIV illness, although they did suffer from other illnesses. In each case, the researcher immediately informed the man that his data could not be included in the study and gave him the choice of continuing his interview or ending it. All 3 men described that talking about their experiences was important to them and asked to continue their interview. This researcher agreed. Referral and access to professional counseling was available to all participants. No participant sought professional counseling related to his participation in this research process. Participants received $10 and travel costs for a first interview and $20 and travel costs for second and third interviews. The first interview with each participant followed an 18-question topical interview guide. Open-ended questions such as, “Can you tell me about any spiritual beliefs or practices you have now?” and “Has being ill with HIV affected your spiritual life? If so, how?” directed participants to describe their spiritual and religious experiences. Of 8 participants who were available to follow-up in 2005, 5 participated in additional interviews to clarify content and check results of data analysis. Instructions Participants defined terms that might be interpreted differently by others, such as “religious,” “spiritual,” “church,” and “partner.” Participants were told that the intent of the study was to understand all of their spiritual and religious experiences throughout their life. Participants were asked to define “spiritual” and “religious” and to talk about their spiritual and religious experiences in their own words. They were asked to discuss their thoughts and feelings about their spiritual and religious beliefs and practices from childhood through adulthood. Participants were asked to describe their thoughts and feelings about spirituality and religion in relation to being gay, having HIV illness, and relationships with family members and friends. They were informed that they would be asked direct questions so that the researcher could understand the experiences they described. Participants were asked to allow the researcher to share reflections concerning their

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descriptions of their experiences and to correct any misunderstanding of their experiences. Participants agreed to read stories resulting from the study and to compare their stories with their data for accuracy in reporting their experiences.

Results Participants agreed that the following major themes were essential to their spiritual and religious experiences. Spirituality was experienced as a dynamic, evolving, reciprocal relationship with oneself, God, or a universal spirit. For the participants who chose the study names Dante, Antoine, Sammy, Edward, Thomas, Dempsey, and Maurice, spirituality was an active process by which one’s relationship to God or a higher power was nurtured through the practices of prayer, meditation, religious fellowship, or attentiveness and submission to God’s will. These spiritual practices “conditioned my desires and wants,” Dempsey said. All 10 participants conceived of “the spirit” as an active inner aspect of their own identity. The spirit was an “I” who was responsible for the executive functions necessary for a religious or spiritual life. Participants developed an identity of self in relation to church through creatively resolving dissonance between institutionalized prejudice in the church and the lived gay Christian experience. The processes by which the self in relation to church was created were (a) identifying one’s value, (b) withholding responses to stereotyping and marginalization, (c) integrating into the church’s social milieu, and (d) responding proactively to religious injunctions against homosexuality. Most participants accepted their homosexuality as the result of natural variations among people, like race or ethnicity. Edward said the following: I had these feelings for boys, but I didn’t think it was wrong because I didn’t look at it as anything out of the ordinary. As I got older, I realized that to others, that wasn’t the right way, but that males who like males, that’s supposed to be outside of the norm. So as I got older, then I had to learn about me. And once I accepted me, as far as it being something against God, well, I disagree. Because I know that God loves me. And I love him.

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Maurice accepted and acknowledged his homosexuality as one aspect of himself and believed that he would be “the same person if you find out I’m gay, nothing changed from yesterday to today,” but he felt that if people in his church knew he was gay, “because of ignorance, it would be a conglomerate of negativism and shun.” Dempsey said, “I don’t really carry myself as a gay man, per se. I’m just this person.” Sammy said, “I’m not openly gay, I guess. If you asked me, and I’m just meeting you, and you asked me am I gay, I would tell you no. It could be hard if I was openly gay. It probably would be.” Antoine said, “It’s probably more of a nonissue for me than of the congregation, because I could care less.” Other participants agreed. Comfortable in their own skin at home, they were most comfortable at church when they looked like everybody else. None of the participants who regularly attended church was openly gay at church, and none had shared his HIV status at church. Dante explained, “The stigma is still there that it’s a gay disease.” Spirituality was expressed through religious, churchbased practices. Most of the men attended church. Maurice described Sunday church service as a “filling station: I go into the gas station and get filled up for the next week of all other adversities and atrocities, ditches and ladders that I gotta climb and all this kind of stuff.” Antoine taught Sunday school. A total of 4 men tithed. Maurice played the organ for his church. Both positive and destructive religious and spiritual experiences were intertwined with family relationships. Antoine, raised in the Baptist church, said the following: I enjoyed it. I’m an only child by my parents. It was a way for me to see my cousins and my aunt. We were very close—it was always a way for us to get together. Later on, we would all eat dinner together. Once, probably around 10 or 11, my grandmother started volunteering me for things in church, and I started getting a little attention, that became fun, too. Sammy’s mother was a Sunday school teacher. Today, he goes to church with his mother when his partner is not in town and with his partner when he can. Terry, who is not active in a church now, remembered, “We’d have new clothes for Easter,” which was celebrated at his mother’s Methodist

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church. Thomas, who believed that religion creates walls and resentments between people, noted that his family members still go to a Baptist church, but that their religiousness has not created Christian tolerance between them: “I talked to my brother just yesterday. He hates gay people.” Edward’s grandmother, his “mom,” brought him up in the church. Edward explained that because she was not a major financial contributor to the church, her pastor refused to come to her home when she was dying. Edward withdrew from the church for many years. When he began attending funerals of many of the people he had loved, he remembered his grandmother saying, “It would be kind of sad not to be affiliated or have a church home.” His decision to reengage in church was especially powerful for him because it took place when he and his brother were in church together. The feeling came, I stood there, the pastor asked to take that walk, my brother was standing next to me, he was holding my hand, and I just looked at him, and I said, ‘OK, bro, I’m ready to take that walk,’ and he didn’t realize what I had said, I shot past him so quickly, and he just stood there and didn’t say anything, and I continued to look him straight in the face and I held onto his hand. And he realized what I was saying, and he stopped and he looked at me and he says, ‘What did you just say?’ I says, ‘Will you walk with me, bro?’ He wouldn’t let go of my hand, he was so happy: ‘This is my brother!’ Religious experiences were perceived as more important to spiritual satisfaction than experiences defined as spiritual but not religious. Participants discussed rewarding experiences of meditating, being in nature, experiencing healing touch, nurturing pets, following health-producing diets, and exercising. Of these activities, all of which might be considered spiritual, none was essential to participants’ perceptions of being spiritually fulfilled. Activities that participants found spiritually satisfying included providing volunteer services such as teaching seniors at church, teaching Sunday school, leading Bible study, reading the Bible with others, opening one’s home to the homeless, and driving for Meals on Wheels. These volunteer services were spiritually satisfying when the participant performed them because Jesus instructed people to help other

people. Prayer, whether it took place privately or as part of a ceremony, and attending church were mentioned by most men as contributing to feeling spiritually satisfied. For 9 African American participants, the traditions and practices of the Black church were the foundation of spiritual and religious experiences. Dante expressed the sadness and frustration of many participants in this study when he said the following: What I find is with gay males, or with especially Black gay males, because the bonding is really with the churches and what not, a lot of us are really torn because you want to go to services, but because you really can’t be who you are, or feel welcome, so to speak—some people do go away or go to gay-friendly churches or what have you— but they really can’t go to their home church because of poor treatment. There’s nothing like being part of your own denomination in your home church. It’s a dilemma. A lot of times, it’s because of the sexual piece; a lot of people choose not to know or understand. A total of 8 participants identified others’ negative responses to their homosexuality as social problems that affected their behavior in formal religious settings but not their self-acceptance. These participants remained strongly connected with their church. There were 2 participants who had stopped attending churches because of anger. Of these, 1 withdrew from churchbased religious activities because religious prohibitions against homosexuality were inconsistent with his beliefs. He continued to practice private spiritual rituals, including prayer and sweats in his Native American tradition. Another expressed anger that God did not remove his HIV illness and attributed his illness and other misfortunes in his life to his not going to church. He did not return to church after prayer failed to heal him. This participant also described that he wanted to go straight, believing that homosexuality was sinful. There was 1 participant who changed his sexual behaviors because of his belief that sex outside of marriage was sinful; another changed his behavior because his partner believed homosexual sex was sinful (the participant did not agree). However, all participants except 1 who said he wanted to go straight denied believing homosexual sex itself was sinful, that it was sinful to be

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gay, or that their churches, pastors, or church congregations were right to think that God did not accept homosexuality. Many participants reported experiencing an essential conception of God’s love of them and affirmation of them as both homosexual and spiritual beings while acknowledging that their churches and communities would probably not accept their homosexuality if it were revealed. A total of 8 of the participants recognized the possibility that they would be criticized, shunned, or excluded from their church if others knew they were gay or had HIV illness. However, with one exception they denied that their withholding of this information about themselves limited their inclusion in the fabric of church life. These participants were active in teaching Sunday school, serving as musicians in their church, leading various ministries, participating in Bible studies, serving on committees and in leadership roles in their church, and attending services and church-based events. Strengths and Limitations The transcendental phenomenological method afforded participants the freedom to explore and reflect on their experiences in depth and over time. The study method demanded prolonged engagement, ongoing and repeated reflection concerning possible biases and prejudgments, and reciprocal clarification of content and perceptions throughout the study process, establishing credibility. Data were stable over the 2-year study period, and the data analysis process was easily audited, increasing the dependability and confirmability of study results. It is both a limitation and a serendipitous strength of this study that all participants were members of social minority groups and 9 of 10 participants were African American. None were White or Hispanic. The majority of the study’s results reflect experiences of gay African American men who live in an area of the country in which the Black church is historically central to the lives of African American people. Despite attempts to recognize and reduce bias during the epoché and interview processes, bias might have been present and unrecognized. Descriptions of results of this qualitative study were specific to the participants’ experiences and cannot be presumed generalizable to other people.

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Discussion Some essential characteristics of the participants’ spiritual and religious experiences were consistent with those identified in other research. The existence of a dynamic, evolutionary relationship with God or a universal spirit is fundamental to developmental theories of faith and spirituality (Fowler, 2000, 2001; Neuman, 1995; Watson, 1999). The practices of integrating spiritual experiences into formal religious practices through religious formation in the family and church are traditional in many Christian churches in the United States, particularly within the Black church (Lincoln & Mamiya, 1990). The centrality of the Black church in the experiences of African Americans has been discussed by many writers (Coleman, 1996; Lincoln & Mamiya, 1990; McClain, 1990; Miller, 2000; Phelps, 1990; Swartz, 2002). This is particularly important in examining the results of this study, considering the disproportionately high rate of HIV infection among African American people in the United States. The core of spirituality for most of these men was God. They forged their relationships with God during early childhood in their families and churches. Most identified the church as the center of their religious and spiritual life. All church-attending participants believed it likely that their church would reject them if their pastor and congregation knew they were gay or had HIV illness. Internalized homophobia has been defined as formation of self-hatred associated with a lifetime of experiencing negative stereotyping related to homosexuality (Kohlberg, 1981; Piaget, 1948; Walsh & Crepeau, 1998). In all, 9 participants in this study denied such feelings, expressing acceptance of their sexuality as one of many aspects of themselves. Participants believed that God accepted their sexuality as God’s own creation. Most participants saw homophobia as a social problem with the potential consequences of stigmatizing and marginalizing them. They responded by withholding information about their sexual orientation, refusing to offer themselves as targets of criticism and bigotry in their church, and by identifying themselves as children of God who would not have created them gay if God did not approve. Their experiences are in some ways comparable to those reported in Miller’s (2005)

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study, in which an African American gay man living with AIDS used spiritual, religious, and cultural strengths to resist internalization of homophobia. Participants’ perception of the church as rejecting of people who are homosexual or who have HIV illness frames a potential problem: Disclosure may allow supports to develop, but disclosure may cause supports to be withdrawn. Although participants in this study expressed satisfaction with their relationship with God, they also identified the importance of maintaining “don’t ask, don’t tell” behaviors while remaining deeply engaged in their church. Further exploration of the impact of heterosexism and homophobia on religious and spiritual experiences of gay members of churches, and especially members of the Black church, may help to identify ways of supporting such men. Research is needed that focuses on how gay men with HIV illness can safely meet their spiritual needs during illness-related crises, because retaining church support while avoiding disclosure of homosexuality and the nature of one’s illness may be difficult. Such research may help nurses to seek appropriate supports for clients. Additional research of spiritual and religious experiences among gay African American men who are HIV-positive but not yet symptomatic may also be helpful in developing culturally appropriate care to address their spiritual needs.

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