INTRODUCTION

Due to advances in treatment, people with HIV in the U.S are now living longer (Kaplan et al., 2000). Yet, living with HIV has significant challenges. As with other chronic illnesses, HIV-positive individuals have to adhere to medication schedules, cope with their side effects, and manage the impact of their illness on family and friends (Kalichman et al., 2003). Unique to HIV is the stigma surrounding the disease (Lee et al., 2003), which gives rise to stressors such as difficulty in seeking social support (Paxton, 2002) and anonymity around full status disclosure (Clark et al., 2003). Further, communities that are most affected by HIV, such as women and ethnic minorities (Ickovics et al., 2002), are already marginalized due to poverty, lack of access to education and other employment opportunities, physical and sexual abuse, and domestic violence (Miller and Paone, 1998). Furthermore, even with the availability of new treatments, HIV-infected individuals from these communities may not have access to appropriate healthcare (Heckman, 2003).

Several studies have focused on how individuals with HIV cope with their illness and related stressors (e.g., Schmitz and Crystal, 2000; Vosvick et al., 2002). Most studies are based on a cognitive theory of coping wherein coping is defined as “constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (Lazarus and Folkman, 1984, p. 141). Among those with HIV, cognitive efforts include altering beliefs and goals, finding meaning in the stressful event, and forming a renewed philosophy of life (Farber et al., 2003). Behavioral efforts include accessing support systems (Power et al., 2003) and modifying lifestyles, such as quitting substance use (Collins et al., 2001). However, some coping efforts may be detrimental to one's health, such as using illicit substances to numb emotional distress, engaging in unhealthy relationships or in social isolation, and believing that one is deserving of the disease (Vosvick et al., 2002).

Religion is an important coping resource for many adults in the U.S. (Pargament, 1997), especially ethnic minorities and women (Chatters et al., 1992). According to Pargament (1997), religion is “a search for significance in ways related to the sacred” (p. 32). Religious coping is viewed as a multi-dimensional, transactional process, one of exchange and encounter between the individual and a situation within a larger milieu (Pargament, 1997). Further, religious coping strategies can be positive or negative (Pargament et al., 1998). Positive religious coping methods (e.g., seeking God's love and care) rest on the perception of a secure relationship with God, a belief in a larger, benevolent purpose to life, and a sense of connectedness with a religious community. In contrast, negative religious coping methods (e.g., feeling punished by God) reflect the perception of a more tenuous relationship with God, a more ominous view of life, and a sense of disconnectedness with a religious community.

Religion has been shown to be important even for individuals infected with or affected by HIV (e.g., Richards et al., 1999; Somlai and Heckman, 2000; Woods et al., 1999). Perhaps due to stigma of homosexuality and other behaviors (drug use, sexual behavior) tied to HIV transmission within religious organizations, many individuals with HIV report being more spiritual than religious (Hall, 1998). In general, ‘‘religion’’ is typically perceived as a narrow construct, one that is linked to dogma and institution. On the other hand, ‘‘spirituality’’ is viewed as a broader construct whereby, among HIV-negative samples, even secular domains, such as parenting (Mahoney and Tarakeshwar, 2005), marriage (Mahoney et al., 1999), and life goals (Mahoney et al., 2005) can be imbued with sacred qualities. Whether individuals with HIV also perceive these domains as falling within their spiritual realm has not been studied, although studies of people with HIV indicate that the diagnosis does have an impact on family life (Pequegnat and Bray, 1997) and health care in general (Collins et al., 2001). In our review, we use the term ‘‘religion’’ as most studies with HIV-positive individuals have used measures of religion.

Retrospective accounts from men and women with HIV suggest that they are drawn closer to God due to their HIV diagnosis (Arnold et al., 2002). This is not surprising as research among individuals who have experienced other forms of trauma report an increase in their religious/spiritual beliefs (Calhoun and Tedeschi, 2000). In other studies, many HIV-positive individuals report greater frequency of prayer, church attendance, and meditation since being diagnosed (Siegel and Schrimshaw, 2002). In fact, living with a disease without a cure reportedly instigates spiritual growth, providing many opportunities to find meaning in life (Hall, 1998).

Religion also has an influence on mental health (Koenig, 1998). Among individuals with HIV, greater engagement in spiritual activities is tied to lower emotional distress (Sowell et al., 2000), lower depression (Simoni and Ortiz, 2003; Woods et al., 1999), greater optimism (Biggar et al., 1999), and better psychological adaptation (Simoni et al., 2002). Ironson et al. (2002) found that, among men and women with HIV, specific dimensions of spirituality (e.g., sense of peace, faith in God) were associated with better immune status (i.e., lower cortisol) and mental health. As yet, researchers have not attended to the spiritual struggles among people with HIV. In one exception, Jenkins (1995) found that men with HIV who reported more religious struggles experienced more depressive symptoms and loneliness.

Unfortunately, less is known about how religion/spirituality influences mental health. For those with HIV, spirituality could enhance self-esteem and mastery (Simoni and Ortiz, 2003) and provide the motivation to abstain from drug use (Stein et al., 2000). However, measures of religion/spirituality used in most studies (frequency of church attendance, prayer, and reading of religious scriptures) limit our ability to gain a comprehensive, in-depth, understanding of the significance of religion/spirituality in the process of coping.

In order to address gaps in the literature, we conducted a qualitative study to comprehensively examine how religion/spirituality influenced the coping process of adults living with HIV. Unlike other studies, we were interested in the positive and harmful side of religion. Rather than imposing a particular definition, we allowed participants to express the ways in which they observed what they considered to be their religion/spirituality. Our long-term goal was to use this thematic framework to develop a spiritually-integrated coping intervention for those living with HIV. Although many studies have noted the significance of religion/spirituality for HIV-infected individuals, the measures in these studies do not provide information on how religion/spirituality can be integrated within interventions. Given that individuals with HIV generally prefer ‘‘spirituality’’ to ‘‘religion,’’ henceforth, we shall use the term ‘‘spiritual’’ except when referring to organized religion.

METHODS

Participants and Procedures

Participants were twenty individuals (10 men, 10 women) with HIV/AIDS who were in treatment at a university-based, AIDS clinic located in the northeastern U.S. Flyers were displayed on bulletin boards in the clinic waiting room. These flyers described the study as an interview study interested in how HIV-positive men and women coped with their illness, including the role of spirituality in coping. Participants had to be 18 years or older and conversant in English. Participants completed a survey on demographic information and on religious beliefs and practices. The first 20 individuals with HIV who expressed interest and were eligible were interviewed. Each interview was 60–90 min long and conducted in a private room at a university-based, community mental health center. All interviews were audio taped and transcribed verbatim. The participants were provided $25 for their participation.

Measures

Demographics

Participants provided information on age, gender, ethnicity, religious affiliation, education, income, sexual orientation, current relationship status, and current level of sexual activity.

Religious Beliefs and Practices

This construct was assessed using selected subscales of The Brief Multidimensional Measurement of Religiousness/Spirituality (Idler et al., 2003; see Table I). For this study, the dimensions chosen were private spiritual practices (e.g., How often do you pray privately in places other than your church/synagogue; response from one ‘‘never’’ to seven ‘‘more than once a day’’), organizational religiousness (e.g., How often do you go to religious services; response from one ‘‘never’’ to six ‘‘once a week’’), daily spiritual experiences (e.g., I feel God's presence; response from one ‘‘strongly agree’’ to six ‘‘strongly disagree’’), forgiveness (e.g., I have forgiven myself for things that I have done wrong; response from one ‘‘strongly agree’’ to four ‘‘strongly disagree’’), religious and spiritual intensity (response from one ‘‘not at all religious/spiritual’’ to five ‘‘very religious/spiritual’’), spiritual coping (e.g., I think about how my life is part of a larger spiritual force; I feel God is punishing me for my sins; response from one ‘‘never’’ to four ‘‘a lot’’), and spiritual history (Did you ever have a spiritual experience that changed your life?; response format ‘‘yes’’ or ‘‘no’’).

Table I. Brief Multidimensional Measure of Religion/Spirituality
Full size table

Elicitation Interview

The interview protocol used open-ended questions within a semi-structured interview format that was divided into two parts: (a) Stress and coping with HIV/AIDS: Under what circumstances were you diagnosed? How did you deal with the diagnosis? What stressors are you facing due to your HIV status? How have you been dealing with these difficulties?; and (b) Spirituality and HIV/AIDS: What does spirituality mean to you and how do you practice your spirituality? How has spirituality influenced your coping with the illness? What difficulties have you experienced in your spiritual life? Are you still experiencing these difficulties? How are you coping with these challenges? What role does forgiveness have for you in coping with HIV? In what way has spirituality influenced your understanding of death? What are changes in how you observe your spirituality since you were diagnosed with HIV?

All the interviews were conducted by the PI and all questions were asked of the participants in the same order. However, in keeping with the theoretical underpinnings of qualitative research, participants were not restricted on how they responded to the questions. Thus topics not part of the interview were allowed to emerge. Data collection took 2 months during summer of 2003.

Data Analysis

The data analysis was accomplished in four stages. First, the authors independently coded a subset of 10 interviews, where each used an open, descriptive code that summarized the content of sentences or paragraphs of each interview. These codes were discussed during weekly meetings. At this stage, no attempt was made to categorize the codes. Next, the initial descriptive codes of the 10 interviews were examined for words, phrases, and concepts within and across interviews; broader categories were now generated along with the definition of each category (i.e., which responses would and would not qualify as exemplars of the category). These coding categories were not mutually exclusive. In the third stage, the categories were applied to the next 10 interviews and the categories and their definitions were further refined until (a) no new thematic information or thematic relationships were identified in transcripts, and/or (b) coders reached consensus on codes to include. Finally, this revised coding framework was checked against all interviews and examined for trends, patterns, clusters, relationships, exceptions, and themes across these interviews (Miles and Huberman, 1994; Patton, 1990). This helped us draw wider conclusions about the framework of spiritual coping among men and women with HIV.

RESULTS

Participant Characteristics

Of the 20 participants, 13 were African American (two gay males, four heterosexual males, seven heterosexual females), six were Caucasian (three gay males, one heterosexual male, one heterosexual female, one bisexual female) and one participant (bisexual female) identified as belonging to more than one race. The mean length of time since diagnosis was 9.8 years (SD = 6.3); half (n = 10) reported history of injection drug use. Average age and years of schooling of was 43.4 years (SD = 7.8) and 12.6 years (SD = 2.23), respectively. Most were on disability (n = 15), while the rest were employed full time (n = 2) or part-time (n = 4). Ten participants reported household income less than $10,000, five between 10,000 and $20,000, three between $20,000 and $30,000, and two more than $40,000. Most were living with a spouse/partner (n = 10) or were dating (n = 3), while seven were not involved in any intimate relationship. With respect to level of sexual activity during the past 6 months, 10 were having sex with one partner while eight participants were not having sex. Two participants were having sex with more than one partner. Majority (n = 12) were parents.

Participant Religious Beliefs and Practices

All but one participant reported religious affiliation: 13 were Protestant and six were Catholic. As shown in Table I, participants rated themselves as moderately religious (M = 3.25, SD = 1.2) and spiritual (M = 3.65, SD = 1.2). Eighteen expressed undergoing a spiritual experience; an additional question indicated that this experience occurred after HIV diagnosis. Table I demonstrates that participants endorsed a range of spiritual experiences and practices, including engagement in private spiritual practices (prayer, meditation, and Bible reading) and in organized religious activities (church attendance and religious activities outside church). The use of forgiveness and spiritual coping was also endorsed. As with other research (Pargament et al., 2004), participants endorsed more use of positive than negative spiritual coping. The last two columns in Table I display item-level descriptive statistics as reported in the 1998 General Social Survey (Idler et al., 2003). Although ranges for some of the items differ across the two studies, it is clear that participants in our study reported greater use of spiritual resources in their daily lives.

Participant Interview Themes

The responses to the semi-structured interview protocol revealed that post-diagnosis of HIV, all participants engaged in reflections of their spiritual life. These reflections were discernible through three themes that underscored a relationship-based framework of spiritual coping (see Fig. 1). Specifically, relationships that were inherent to participants' spirituality were their: relationship with God or a Higher Power, renewed engagement with life, and relationship with family. The following paragraphs discuss these themes using participant narratives to illustrate their significance and meaning. Although the themes are quantified wherever possible, it is important to point out that our findings are not meant to provide general prevalence rates of particular experiences within the HIV population at large. Further, we shall integrate the quantitative data with these themes whenever relevant and appropriate. All quotes are tagged with pseudonyms to ensure anonymity and confidentiality. The pseudonyms were matched to the participants at random and are in no way indicative of their ethnicity. The participants' age is included in the first instance of each pseudonym.

Fig. 1.
figure 1

A relationship-based framework of spirituality.

Full size image

Relationship with God/Higher Power

All but one participant (n = 19) talked about an established relationship with God since childhood, largely attributable to how they had been raised. This relationship was fostered by attending Sunday school at church, being educated in a parochial school, or reading the Bible and praying as instructed by their parents. Half the participants (five females, five males) reported having drifted away from religious teachings before being diagnosed with HIV. Importantly, for all participants, their HIV diagnosis served as a trigger to reflecting upon their relationship with God or their Higher Power. These reflections encompassed the following three sub themes.

Gratitude for God's Benevolent Influence

At the time of the interview, it was striking that God/Higher power was appraised as a benevolent influence by almost all of the participants (Ten females and nine males), all of whom were grateful for God's blessings, even if the blessing was a “lesson in the form of HIV” (Pauline, 47). Following are a few remarks that illustrate this notion:

I’m stronger and maybe that's why God chose me as opposed to somebody else. (Rita, 49)

It's gonna be all right and God is here. God is always here. He loves. (Jessica, 48)

He [God] is the one keeping me here. It's a miracle in the morning. If it wasn't for Him, I wouldn't be here. (Ashley, 39)

It [God] is a feeling in you that gives you the strength to do things. (Rick, 50)

God did this for a reason. Slow us down and see what life is all about. (Amy, 32)

When asked if they were upset at God for the stress caused by HIV, all 19 participants emphasized that God's influence was nothing but positive. More importantly, all of them took responsibility for the behaviors that caused the infection. Jessica, who was infected by drug use stated, “I think I left Him for a while when I was on drugs. I don't think He's ever left me.” Another woman who was infected by her partner also absolved God of any role in her infection. She said, “God didn't tell him [partner] to stick it [needle] in himself” (Sonja, 48). In fact, it was unthinkable for these participants that God could be responsible for something as terrible as HIV. A male participant explained, “God had nothing to do with it. It is the individual. God wouldn't put nothing on you like this to punish you” (William, 45). A tangible proof of God's blessings was that they were still alive today, even when their doctors might have lost hope. As one participant who almost died of an opportunistic infection proudly shared, “That's the worst pneumonia you could get. I had it in both my lungs. I was lucky. I just made it. But the master, He just wasn't ready for me. If He's not ready for you, you aren't going anywhere” (Samuel, 50).

Spiritual Struggles

Despite acknowledging God's benevolent influence, many participants (seven females, five males) experienced struggles with their spiritual life; their struggle was more pronounced in the months following their diagnosis. Most of these individuals (five females, five males) felt they had drifted from religious teachings prior to being diagnosed. The struggle was manifested through feelings of shame and guilt. One woman who became involved in drug use and had an extramarital affair expressed, “When I first found out that I had the virus… I felt that He [God] was punishing me because of what I had done” (Jackie, 50). For three of the five gay men, the diagnosis raised questions as to whether they were being punished for their sexual orientation. One gay male who was a Catholic said, “I felt that I deserved this kind of thing” (John, 44). But it was an overwhelming sense of anger and disappointment with the church as an organization that characterized the spiritual struggles of gay men. William, who felt “drawn” to the church for its rituals and sermons expressed, “I still go to the Catholic Church but they are anti-gay, anti-abortion, and opposed to women's rights. And those are things I’m positive for.” Importantly, at the time of the interview, all 12 individuals who experienced spiritual struggles felt God had forgiven them, although they still struggled with forgiving themselves. One woman summarized this rather succinctly, “Oh, I know God is in my life. I suppose I feel guilty sometimes. I’m working through it. I think I can forgive others quicker than I can forgive myself” (Rita, 49). Further, as seen in Table 1, the items on spiritual coping suggest that at the time of the interview, participants reported very low spiritual struggles (or negative spiritual coping) and relatively higher rates of positive coping. Also, scores on items related to forgiveness were generally within the higher range.

Building Connections with their Higher Power

Participants used two main ways of connecting with their Higher Power: private religious practices such as praying, meditating, and reading the Bible, and participating in public church services. Based on Table I data and the narratives of the participants, it is evident that prayer, meditation, and Bible reading were important to the participants. These methods served as a sort of ‘‘quest’’ orientation in their spiritual practice (Batson and Ventis, 1982), and were crucial for those who had less faith in organized religion. Rick, who did not believe in any religion but in a Higher Power explained, “When I read the Bible, I don't look for an understanding but a feeling. It's like peaceful. This is more truthful than the word of the pastor.” For another participant, “I’m in a bad mood, I read the Bible and it makes me feel a lot better. It takes the anger away from me” (Pauline, 47). According to Sonja, “church doesn't necessarily make a spiritual person. Your church can be right here [interview room]. You open your Bible; you praise God that you will gain understanding, and how it can pertain to your everyday life.”

The interviews revealed that attending church was critical to the spiritual practice of only six participants (three females, three males). For the remaining (seven females, seven males), they enjoyed going to church when possible as it provided them the time and space to reflect, focus, and meditate. Only four participants (two females, two males) had shared their diagnoses with one or more members of their church, usually the pastor. This suggests that, for the participants in this study, church attendance was not driven by expectations of support for coping with HIV. Moreover, attending church served other purposes, such as keeping “mind off the illness” (Samuel); providing “intellectual focus” (Dorothy, 51); serving as a “nice place to meditate, like the Zen garden or something” (William); providing “spiritual food” for reflection (Stanley, 46); and giving “strength through fellowship with the believers” (Jackie). For one gay male, although he did not attend church, contributing to the church as an artist was important to the spiritual aspect of his life. He remarked, “I don't know whether there is a God but I like to do doors and windows for churches. That's kind of neat because there's a little part of me in every one of these churches that will be there long after I’m gone” (Jefferson, 49).

Renewed Engagement with Life

Consistent with other studies (Hall, 1998), all participants, in some form or another, indicated strengthening the spiritual aspect of their lives as a result of HIV. As a rule, there was reportedly no decline in the significance of spirituality. Ken, who claimed to have never drifted from God, said, “Well, basically, it's [HIV] made me hold on to it [spirituality] a little bit tighter than I was holding on to it before.” Dorothy described how experiencing physical distress due to HIV brought her closer to God, “sometimes I have so much pain in my body when I’m trying to go to sleep, so much pain. And it's in those moments of pain that I do feel close to God.” For Rick, the “peace” that he experienced through his spiritual life helped him “bear the physical pain.” Overall, this spiritual growth was tied to a renewed engagement with life post-HIV diagnosis in three ways.

Self Care

Although many (five females, six males) reported drug use and social isolation following diagnosis, over time, their spirituality increased their resolve to take care of themselves.

I’ve changed my eating habits. I don't eat meat anymore. Usually just vegetables. Green vegetables and things like that. I drink a lot of water. I don't drink sodas any more. I don't drink coffee/tea any more. Like I said, I’m not full blown but before it gets to that stage, let me try to be a healthier person. (Laura, 30)

Although this determination was in no small part facilitated by HAART, for 13 participants (eight females, five males), the motivation for medication adherence was sustained by their spirituality. For some (two females, three males), discoveries in HIV medications represented the “hand of God” (Oliver, 30). According to Jackie, “God did not heal man with His hand, He did it through doctors” and for Laura, “They [doctors] give you a sense of hope when you don't think there's hope.” However, for those who had been living with HIV for several years, like John who was diagnosed 18 years ago, “I don't want to have to worry about the medications. I am just tired of living with it [HIV].” However, the hope provided by doctors was crucial for John, like “a video game, where you buy yourself enough time to get from one level to another.” Rick, who was also suffering from Hepatitis B and C, expressed great conflict with prolonging his life with medications, but trusted the doctors.

I’m tired of the pain, the medications. I feel I ain't going nowhere. But God has a hand in everything in life. God gave them [doctors] the wisdom to do medicine. Some days they are right, some days they are wrong. But I still rather trust them because God gave them that wisdom.

For 15 participants (nine females, six males), self-care also included seeking forgiveness from God and learning to forgive themselves for the transgressions they felt may have contributed to their HIV diagnosis. According to Ashley, “I have accepted who I am. I have accepted what I had done. It was like a spirit awakening within me that no matter what happens, I’m still a person, I’m still human.” For Laura, learning to accept the virus within her was critical:

But I breathe like anyone else, I bleed like anyone else. I go through emotional stress just like anyone else. I have my monthly menstruation just like the next female. So pretty much I am the same. You know…as the next female. Despite the crippling disease.

Being infected with the HIV virus affected the way participants judged others in their lives. As they came to terms with living with the disease and as they began to forgive themselves, they learned to be more generous with others in their lives, including family and friends who they felt had deserted them: “because its not worth it taking the energy to expel any energy on a bad situation.” (Jefferson) and “You don't need a lot of enemies. You don't because you might need your enemy one time” (Amy).

Transformation of Life Goals

Dorothy declared, “I will tell you that the day I found out about my status, my entire value system, my whole world turned upside down.” For 13 participants (seven females, six males), this “upside down” transformation involved re-evaluating life goals and how they lived their daily lives. Importantly, there was a perceptible shift from more individually-oriented desires, such as career, financial and social achievement, to more inward-looking aspirations and an ‘‘other’’ focus. Below are some comments that illustrate this transformation.

The fame and the fortune. All that doesn't interest me anymore. (John)

Think about how you can make yourself better. How you can share yourself with others and perhaps make them better. To understand this life a little better, to help me be a better mother, to help me be a better person. (Sonja)

I live more in the moment than I ever had before. If it makes me happy today, that's what I’m gonna do. Cause life's too short. I may not be here tomorrow. (Oliver, 30)

Just wake up in the morning. Sometimes I just look at the sky, the clouds. It's just life. My wife, my children. Encourage people. Just life itself. (Harry)

Accepting Mortality

Ten participants (five females and five males) acknowledged thinking about death and preparing to die whenever God was ready to take them from this life. But thoughts of death helped thrust a focus on living for Jackie, who explained, “All I do is thinking about living. If God do take me, if I die today, or I die tomorrow, then I’m not gonna be condemned” and for Ben, “I wake up in the morning and I don't expect to die. I expect to live each day. But I know that it will be time [to go]. I just pray that I can do some good before it happens.” Letting God “call the shots” (Rita) about the timing of their death allowed participants the “freedom” (Oliver and Pauline) to enjoy life to the fullest. For the remaining 10 participants, dying was nothing unique to them. Interestingly, when contemplating about heaven and hell, Jessica remarked, “We are all living in hell right here.”

Relationship with Family

For many (nine females, five males), the HIV diagnosis served as a wake-up call for rekindling family connections. As one mother put it, “God wakes me up in the morning and my children keep me going through the day” (Sonja). Similar to how spirituality provided participants the strength for self care, to transform life goals and face mortality, spirituality also directly influenced their resolve to sustain their family relationships. In a sense, spirituality and family relationships were inextricably tied to each other. This was important as sustaining family relationships helped participants find: a sense of purpose and support to cope with their illness, but also caused strain in their lives.

Finding a Sense of Purpose

Thinking of their children, nieces, and nephews provided participants (nine females, five males) with a reason to live and look forward to a longer life. Although medications made this possible, having a purpose was essential to providing them the motivation to carry on with life. As one mother of six expressed, “As different medicines come here, you live longer than you expect if you take care of yourself. And I thought to myself, that's my number one goal—to live longer and seeing my kids, grandkids, and marriage and college” (Amy, 32). Another mother with grandchildren emphasized, “I want to live. There's no need for me to sit back here and feel sorry for myself because I have all the reason to live for. I have my grandchildren, children, and my husband” (Jackie). According to one participant who did not have any children, “I think I’m gonna be around long enough to see my godsister's son grow up” (Ken, 43).

For those with children (nine females, three males), their diagnosis made it compelling to take a look at life outside of themselves, as articulated by this mother, “I look at my kids. I look at their surroundings. I look at a whole bunch of things” (Amy, emphasis in original). Other comments that reflected a focus on family include, “just wanting to be there for my kids as long as I can” (Ashley, 39), “I live for my kids” (Pauline) and “My grandkids, they are important to me now” (Samuel). In a sense, having children who were dependent on them forced participants with children to not dwell on their misery for too long. As this mother of two stated, “I was sad when I learned I had HIV but I had to think I got kids so I had to go home and live my life like a regular person” (Ashley).

Finding Support Through Families

Families also functioned as a source of support. Many (six females, six males) expressed receiving emotional support from their partner or spouse in coping with the HIV diagnosis at some point in their lives. For instance, one married male participant was very grateful to his wife for her support, “I love her. We went through a lot. It's been hard on her, me and my problem [HIV]. Because we love each other” (Harry, 50). Very often the support provided by partners was not just in reminding participants of their medications and medical appointments, but also in accepting their spiritual life. This last aspect was important to one gay participant while choosing his partner, “My partner now, he embraces this aspect of my life. He is the first person who has totally embraced it” (John, 44). A few (three females, two males) expressed tremendous relief and satisfaction simply because their families had accepted their illness.

Five women mentioned the much-needed emotional support they received from their children. One mother of a teenage daughter described how her daughter reached out despite her attempts at isolating herself: “I didn't meet her [daughter] and I didn't call for two days…she said ‘‘Mommy, if you feel there's a day you can't meet me or something, just call me and let me know, rather than isolate yourself because you have people that love you” (Sarah, 41).

Families as a Source of Strain

However, families also caused strain, but only for the women in the study. These women worried about the impact their HIV status would have on their children and/or the rest of their family. Dorothy, a mother of two daughters, stressed, “Not only am I afraid of punishments for my actions, but how my actions are gonna affect people whose lives touch mine…I have children. And I know that knowing their mom having HIV impacts them.” The concern regarding impact was essentially related to the “shame” (Rita) that the women felt HIV would bring to their families. Often, the women did not share their status with anyone for years, as they could not “bring myself to hurt my family like that” (Jessica).

All of these women also reported stress related to meeting their responsibilities as caretakers of their extended family. One participant who was struggling between meeting the needs of her daughter and her mother shared, “Right now I’m taking care of my elderly mother and I’m stressing a lot with her. I got so many people dependent on me. I don't want things worse for my mother or my daughter” (Sarah). An exclusive focus on ‘‘others’’ also raised conflict within themselves, as articulated by this participant, “I don't do anything for myself. I am supposed to give to my kids. But they don’t. I want to take a sign language class. And I want to go back to playing my violin” (Sonja).

DISCUSSION

Through comprehensive, in-depth interviews, this study identified themes that are relevant for the spiritual lives of men and women coping with the challenges of HIV illness. In particular, the themes point to the salience of ‘‘relationships’’ in the lives of these participants – with God/Higher Power, with family, and with life – all of which are intrinsic to their spiritual life. An integrative review of studies among individuals with advanced cancer also identified these three themes as influencing spiritual well-being (Lin and Bauer-Wu, 2003). Previous studies with HIV-positive adults have demonstrated the importance of religion/spirituality for this population (Ironson et al., 2002) and have found that HIV diagnosis influences family relationships (Pequegnat and Bray, 1997), health care (Collins et al., 2001), and sources of meaning in life (Farber et al., 2003). In allowing HIV-positive adults to demarcate their own boundaries of the influence of religion/spirituality in their lives, our study shows that for these individuals, their spiritual life is intricately woven into other life domains, such as family relationships, self care, life goals, and how they understand mortality. That is, the strength that participants gain from their spirituality provides them the motivation and determination to develop and grow within these life domains and cope with their HIV disease. Furthermore, our interviews were also open to participants' experiences of spiritual struggles, especially in coming to terms with their HIV diagnosis. Pursuing family relationships also came at a cost for women, who were faced with balancing their own needs with those of their family members.

Like most qualitative research, this study is limited by its small sample size. Also, our study participants were perhaps more spiritual than others with HIV. Nonetheless, the results are valuable as those most affected by HIV in the U.S. are ethnic minorities, who are more religious than the general population (Chatters et al., 1992). Moreover, many participants in the study were open about the ‘‘negative’’ aspects of religion, including their struggles with organized religion. Another limitation is related to the retrospective nature of the study and that it is based on self-report. Longitudinal studies that follow individuals with HIV from their point of diagnosis are likely to shed greater light on the influence of HIV on their spirituality and vice versa. Also, it would be valuable to include observations of peers and family members. Finally, all participants belonged to Judeo-Christian religion, limiting the generalizability of the results to other religious groups.

The thematic framework also offers ideas for topics within a spiritually-oriented coping intervention. First, it would be important to allow men and women with HIV to define what spirituality means to them, how spirituality has ‘‘evolved’’ in their lives, and examine their experience of spiritual struggles (shame, guilt, and anger at God/Higher Power). Based on our interviews, expressions of these struggles can be critical during the months/years following the HIV diagnosis. Second, the themes highlight the notion that spirituality can be practiced in a variety of ways, not all of which include organized religion. Hence, even if some individuals (e.g., gay men) may be excluded from organized religion, there are other ways (prayer, meditation, Bible reading) through which they can observe their spirituality. Thus, individuals with HIV can be encouraged to seek appropriate resources (e.g., meditation groups) to help them connect with their Higher Power. Third, ‘‘spirituality’’ is not all about the ‘‘higher’’ realm. For our participants, strengthening family ties was an inextricable component of spirituality. Hence, interventions can include discussions on re-building family connections, finding support from family members, and balancing personal and familial needs. The latter is particularly salient for women.

Overall, the themes identified in this study, suggest that, for many women and men with HIV who are spiritually inclined, HIV diagnosis facilitates reflections on their spiritual life. For the most part, spirituality is a positive force for these individuals, one that offers resources to actively engage with life. Of note, many of the topics recommended above are not bound to any particular religion or religious beliefs, making them applicable for other religious traditions. Future research can focus on integrating these topics within therapeutic interventions, and examining which samples benefit the most from such integration and whether inclusion of these topics leads to better intervention outcomes. The significance of these topics could vary by gender and sexual orientation. For instance, family-focused topics may be more important to women while expressing their struggles with the church and subsequent feelings of spiritual isolation could be significant for gay men. Longer term follow-up of the participants could further advance our knowledge of the longitudinal benefits of such interventions.