The Sun Always Comes Out After It Rains: Understanding Posttraumatic Growth in HIV Caregivers

By Cadell, Susan

Coping theory and research have long focused on negative outcomes. However, a growing body of literature has indicated that individuals may experience certain benefits from stressful life events. This research explored the positive and negative changes in caregivers’ lives after caring for someone who had died of complications related to HIV/AIDS. Fifteen participants with either high or low scores of posttraumatic growth were interviewed. Data were analyzed from a grounded theory standpoint using open, axial, and selective coding. All of the individuals interviewed were undergoing or had undergone a process of finding meaning in their bereavement, in HIV disease in general, or both. Themes of distress, growth, humor, support, spirituality, fear of death, and the intertwining of support and spirituality emerged from the data. This research contributes to the growing areas of concentration on strengths and positive outcomes in coping. In addition, the results echo the re-emergence of interest in spirituality and social work. KEY WORDS: caregiving; coping; HIV/AIDS; posttraumatic growth; spirituality; stress

Coping theory and research have long focused on dealing with negative outcomes. Historically, little or no attention has been paid to possible positive outcomes. However, a growing body ofliterature has indicated that individuals may experience certain benefits from stressful life events. In recent years, various names have been suggested for the occurrence of benefits from adversity. It has been referred to as "posttraumatic growth "(Tedeschi & Calhoun, 1995;Tedeschi, Park, & Calhoun, 1998), "stress-related growth" (Park, Cohen, & Murch, 1996) , and "positive by-products" (McMillen, 1999; McMillen & Cook, 2003). Similarly, resilience has been defined as the ability to adapt to, cope with, and even be strengthened by adverse circumstances (Masten, Best, & Garmezy, 1990; Scannapieco & Jackson, 1996). Yet the concept of growth goes beyond resilience in that it encompasses thriving: a gain that surpasses a return to the prestressful state (Ickovics & Park, 1998). People have been observed to benefit from experiences as diverse as natural disasters (Thompson, 1985), war (Aldwin, Levenson, & Spiro, 1994; Elder & Clipp, 1989), disability (Dunn, 1994) , rape (Burt & Katz, 1987) , incest (Silver, Boon, & Stones, 1983), and bereavement (Calhoun & Tedeschi, 1989; Frantz, Trolley, & Farrell, 1998; Kessler, 1987; Lehman et al., 1993).

Caregiving has been widely acknowledged as a stressful experience (Gignac & Gottlieb, 1997; Gottlieb & Gignac, 1996; Schulz, Visintainer, & Williamson, 1990; Zarit, 1989). In the literature, considerable attention has been given to the burden or distress that is experienced by caregivers (Hooker, Monahan, Shifren, & Hutchinson, 1992; Pearson, Verma, & Nellett, 1988; Pruchno & Resch, 1989; Stephens, Ogrocki, & Kinney, 1 99 1 ; Zarit, Reever, & Bach- Peterson, 1980). Recently, however, the positive aspects of general caregiving have been gaining attention. Kramer (1997) called for the incorporation of positive aspects of caregiving into theories of caregiver adaptation. Cohen and associates (2002) investigated the positive aspects of caregiving in 289 Canadian caregivers. They found that positive feelings about caregiving were associated with less depression, lower perceptions of burden, and better perceived health.

In a qualitative study with 23 caregivers, Tebb (1994) found that caregivers identified feelings of being needed and useful, which gave meaning to their lives as caregivers and allowed them to tolerate their difficult circumstances. The meaning that is derived in the coping process is crucial, especially in chronically stressful situations (Gottlieb, 1997). Meaning in caregiving, or the sense that people make of their caregiving experiences, has also been explored with caregivers of frail older adults (Noonan &Tennstedt, 1997). It was one of many factors contributing to caregiver well-being. Higher levels of meaning in caregiving indicated lower levels of depression and higher self-esteem.

Caregiving in the context of AIDS is particularly stressful. The stigma associated with the disease (Herek & Glunt, 1988; Powell- Cope & Brown, 1992) and the lived experience of losing friends, acquaintances, and family to HIV disease make the situation additionally traumatic (Klein, 1998; Nord, 1997; Ryan, Hamel, & Cho, 1998). Although the literature on AIDS caregiving and bereavement is scarce, especially studies that investigate positive outcomes, there is some indication that caregivers grow from the experience (Folkman, 1997; Garfield, 1 995; Moskowitz, Folkman, Collette, & Vittinghoff, 1996;Viney, Crooks, Walker, & Henry, 1991). In a seven- year longitudinal study, positive meaning from caregiving was found to be an important mediator in experiencing depression by gay men caring for partners with AIDS (Folkman, Chesney, Collette, Boccellari, & Cooke, 1996).

THEORETICAL FRAMEWORK ON STRESS AND COPING

This research is part of the paradigm shift to incorporate positive aspects of coping; it is grounded in the theoretical framework of stress and coping as proposed by Folkman (1997). The original model that Lazarus and Folkman (1984) proposed included positive emotion as a possible outcome only when there was a favorable resolution to a threatening event. Folkman reworked the original model of transactional coping (Lazarus & Folkman) to incorporate existentialism (Farran, 1997) through the inclusion of meaning-making and positive psychological states.The revised model includes the possibility of experiencing positive emotion when there is no favorable resolution or no resolution at all through a process of meaning making (Folkman). In addition, the revised model is designed to indicate the co-occurrence of positive and negative psychological states.

Personal growth has been observed in many diverse populations, including HIV/AIDS caregivers (Cadell, 2001, 2003; Cadell, Regehr, & Hemsworth, 2003; Cadell & Sullivan, 2006). Yet little research has explored factors that contribute to or enhance personal growth. The purpose of this research was to explore the personal growth experiences of HIV caregivers and the specific dimensions of that experience that affect them.

METHOD

The 15 participants were drawn from a larger Canadian study reported on previously (Cadell, 2001, 2003; Cadell etal.,2003).The criterion for inclusion in the larger study was to have cared for someone who had died of AIDS-related complications. Recruitment was accomplished through posters in English and French in AIDS service organizations, gay pride events, and AIDS conferences.Those who volunteered completed a questionnaire that included a question asking whether they were willing to be contacted for a follow-up interview.

In preliminary analyses of the first 100 respondents to the questionnaires in the original study, one-way analyses of variance demonstrated a significant difference by gender on the two measures of personal growth: Stress-Related Growth Scale (SRGS) (Park et al., 1996) [F(2, 97) = 4.820, p = .010] and Posttraumatic Growth Inventory (PTGI) (Tedeschi & Calhoun, 1996) [F(2, 97) = 3.020, p = .053]. Post hoc tests indicated that significant differences occurred among all three genders (male, female, and transgender).

Because of the differences, the individuals for the qualitative portion of the study were selected by their gender. Participants were also selected by their PTGI and SRGS results to represent both ends of the spectrum of growth scores. In addition, participants were selected by location so that face-to-face interviews could take place. Ultimately, the entire population of transgender individuals from the survey (n = 3) was interviewed.

Interview Protocol

The semistructured interviews followed an interview schedule (see Table 1) that was based on literature concerning caregiving and HIV/ AIDS (Folkman et al., 1996; Folkman, Chesney, Cooke, Boccellari, & Collette, 1994; Folkman, Moskowitz, Ozer, & Park, 1997; Richards, Aeree, & Folkman, 1999). Each interview began by asking the participant to talk about the person who had died and continued with open-ended questions about changes in the participant’s life since then.

Sample

Fifteen people (see Table 2) who had indicated that they would be willing to do a follow-up interview were contacted; all agreed to be interviewed. They ranged in age from 26 to 64 at the time of interview. They had each experienced more than one death of a partner, friend, or family member. Although some worked in AIDS organizations, those who did were interviewed about their personal relationships.

Procedures

The interviews were conducted in large Canadian cities in the place and language (French or English) of the participant’s choice. Seven were interviewed in public spaces, and eight were interviewed in their own homes. Interviews were audiotaped with the participant’s written permission and then transcribed verbatim. Consent forms stated that the study had been approved by an ethics board and informed the participants that they could terminate the interview at any time they wished without personal consequences.Twenty dollars remuneration was provided to each person. Analysis

The analysis was conducted using grounded theory with open, axial, and selective coding (Lincoln & Cuba, 1985; Strauss & Corbin, 1990). Open coding was used to articulate themes. The second phase of analysis, axial coding, involved evaluating the connection among the themes. The final themes were identified in the third stage, selective coding. Member checks were performed with those participants who were willing to provide feedback; the resulting information was incorporated into the findings.

RESULTS

All of the individuals interviewed were undergoing or had experienced a process of finding meaning in their bereavement, in HIV disease in general, or both. The themes that emerged were distress, posttraumatic growth, humor, support, spirituality, fear of death, and the intertwining of support and spirituality.

Distress

Although there were positive changes in the caregivers’ lives, their stories of distress provide a context for the changes. Respondents noted that experiences related to the declining health or death of loved ones caused significant amounts of distress. For example, Albert (pseudonyms are used throughout to protect the participants’ identities) cared for his foster daughter while she was dying: "I wouldn’t accept that she was gone because I had taken care of her for 2 1/2 years before she left me, and we were so close." Others spoke of distress regarding changes in loved ones’ personality and behaviors. When Sarah’s partner began suffering from dementia, it caused her pain when the dementia reduced his ability to express feelings and he could no longer express his love for her.

Multiple losses are common in the context of AIDS. Many of those interviewed had experienced the death of numerous friends or family members. Regret also played a part for some interviewees. For instance, Michael assisted his partner in dying. Although Michael was sure at the time that he was doing the right thing for both of them, he came to regret his decision enormously.

Posttraumatic Growth

All individuals interviewed had been changed by their experience of caring for someone who had died of AIDS. All the reported changes were positive even in those who had low scores on the PTGI and the SRGS. Many grew as they came to accept and like themselves, some for the first time. Others found that they gained strength from the experiences of caring.

For some, the benefits came from the impact of HIV disease; AIDS cannot be separated from caring about those who are infected. Brenda talked about working in the AIDS movement as well as her conscious choice to grow as a human being. Carol, who was HIV-positive, considered that if she were cured she would be "devastated" as AIDS had enriched her life. Gary thought that his volunteer care team experiences had made him "a better person, a brighter person." Brenda spoke wisely about the effect of HIV on her life:

So I owe AIDS nothing. I owe AIDS nothing, but I sure owe a lot to the people who have contributed in very remarkable ways to my happiness. Not my sadness, my happiness. The sun always comes out after it rains.

Humor

Many of the people interviewed used or spoke of humor; they related humorous anecdotes about their caregiving and bereavement experiences. Even as she was recounting her partner’s last hours, Sarah laughed at a fond memory of him. For Michael, humor symbolized the end of grief and closure about his partner’s death.

Humor also worked to restore dignity and provide support. It was considered a coping mechanism, especially for those working in AIDS service organizations, who sometimes used dark humor. However, on the basis of his volunteer experience, Gary cautioned that humor must be used carefully as it can compromise confidentiality even while relieving stress.

Support

Caregivers experienced support from many sources. Family provided a great deal of support for some of the interviewees; several participants stated that their mothers were extremely supportive of them. Brenda enormously appreciated the support of her mother, her daughter, and her partner, who had served in the war in Vietnam: "He has tremendous understanding of multiple loss so has been a remarkable, remarkable support to me."

Sarah was a transsexual woman whose own family had not been supportive of her. However, her partner’s mother had been very supportive; she "was like totally amazed by me and the way I would help her son." The two women remained in touch after Sarah’s partner died; Sarah highly valued this relationship.

All of the interviewees had the support of friends. Unfortunately, many had lost numerous friends to AIDS, and so their circles of support were reduced. Albert stated that he did not consider himself to have a large circle of friends; although the relationships he had were strong, he would have liked to have had more. Participants’ friendships not only provided support, in some cases they did more. For instance, Michael’s friends took him overseas on holiday. Sarah’s friends found her a new home when she needed it. Carol characterized the friends who were the most helpful as those who listened.

Support was also sought from professionals, although not all were helpful: Michael said he had a psychiatrist who would doze ofF during sessions. Michael did, however, have some helpful experiences. He participated in a caregiver group at an AIDS service organization as well as an outpatient psychiatric group. Michael also credited another professional: "Throughout this whole thing what was helpful was to have the same psychiatric nurse, Rita. She kind of kept me grounded."

Spirituality

Overall, the interviewees held a strong sense of spirituality. Many of the participants addressed issues of spirituality spontaneously. Others identified spiritual themes when asked whether religion or spirituality played a role in their experiences. Albert stated that his caregiving has helped him connect with his Native culture.

Many of those interviewed differentiated between religion and spirituality. Brenda found that her work in an AIDS service organization was very spiritual-"walking beside somebody on . . . the last journey of their lives"-even though she identified as not being religious. Carol did not wish to discuss spirituality as she found it too personal. She did, however, identify that she believed that "there’s something somewhere" and that this conviction had been a constant in her life before and throughout her process of change and growth with HIV disease.

Beliefs about how the world should function also emerged. Brenda believed that the people who had died would repay her for her care by taking care of one another. Gary held strongly his value of not leaving people alone to die. This extended to himself, and he trusted that others would be there for him when the time came.

Spirituality was also expressed in the creation of rituals and memorials. Albert described his personal ritual of traveling to places where his friends would want to go: "I bring a picture of them, and I let it float in the water. I let it go, you’re here now." Dawn talked about a rune she wore for strength; she also had a spell bottle that was given to her by a Wiccan friend. She used it to prepare herself for difficult tasks the following day. Brenda discussed the importance of making her office a positive space for herself. She memorialized her friends and clients who had died by having pictures of many of them on her wall.

Many interviewees had incorporated deceased individuals into their lives in new ways. Gary had a sense that those he had cared for while they were dying were now keeping him safe. Sarah felt that her partner was not very far away and talked about how she continued that connection: "I went over and I held his picture and I went, ‘I’m not feeling very good.’ So what it is doing is having a conversation with him."

Fear of Death

Because the people who participated were all bereaved caregivers, many were grappling with existential issues. Several interviewees spontaneously talked about the changes in their feelings about death. Brenda offered that she was no longer afraid of death because of the process of transformation through which she has gone. Dawn, whose father died when she was young, was still terrified of dying and of being present when someone else was dying. However, she had become more comfortable expressing herself about her fears and her losses. Albert spoke about being HIV-positive himself:"Now I have no fear of death myself because I’ve seen so much of it. It’s made me a stronger person."

Where Support and Spirituality Intertwine

Spirituality and support overlapped for many of the HIV caregivers interviewed. Albert’s spiritual connection strengthened him to forgive his parents for the abuse that he said he experienced, thereby creating a new source of support for himself. "I forgave both my parents for all the abuse and sexual abuse.. ..That made me even stronger." Many of the caregivers derived significance from the care that they were able to provide to the person who died of AIDS. This search for meaning was essentially a spiritual journey and provided a source of support for those who had experienced it. Brenda derived much significance out of her role as supporter, which in turn was a source of strength for hen’Tm absolutely convinced that this is something that I was meant to do."

Sarah gained an increased sense of significance and strength from her ability to care for her partner. After his partner died, Michael got a dog. Not only was the dog a source of support and affection, it also reinforced Michael’s ability to provide care and made him realize that he had been "a good caregiver" for his partner.

DISCUSSION

This research explored the growth experiences of HIV caregivers and the elements that influenced the process of growth. Participants were chosen by scores of growth from both ends of the high-low spectrum from two widely used survey instruments. Despite their diverging scores, these caregivers each had experienced personal growth in some form or another. Strikingly, distress remained high even for those who seemed to have demonstrated the most growth. All of the participants recounted painful stories of their experiences along with the positive. The co-occurrence of positive and negative emotions as well as meaning-based coping are both new elements added to the transactional model of stress and coping by Folkman (1997). These data provide a key illustration of the validity of those aspects of the revised model. Spirituality came up spontaneously in many interviews but was addressed in all. Canda (1989, p. 573) defined spirituality as "the basic human drive for meaning, purpose, and moral relatedness among people, with the universe, and with the ground of our being."These caregivers expressed a strong sense of connection to the world and to those who had died. Many distinguished between spirituality and religion. Many had incorporated the deceased individuals into their lives in new ways, and several had established rituals to celebrate those who had died. The caregivers sought meaning in their relationships with those for whom they had cared. This search for meaning is essentially a spiritual journey and provides a source of support for those who experience it. For many, the intertwining of support and spirituality led to new growth. Some were able to work through experiences from their past. Others were able to understand their connections to the world in a new way.

Spirituality plays an important role in the creation of meaning in caregiving (Richards & Folkman, 1997). Religion offers "an ultimate vision of what people should be striving for in their lives individually and collectively" (Pargament & Park, 1995, p. 15). The spiritual quests and connections identified by the 15 individuals interviewed demonstrated a strong sense of such a vision. However, religion "provides its adherents with a set of practical methods, a ‘map’ to keep them on the proper path toward the ultimate designation" (Pargament & Park, 1995, p. 15). Many of the interviewees were emphatic about rejecting the map as prescribed in religion. Pargament and Park (1997) suggested that religious coping provides an answer in the face of human insufficiency that nonreligious coping does not. The HIV caregivers interviewed may have confronted the limitations of humans through spiritual coping rather than religious coping. The differentiation of spirituality and religion by the interviewees may be reflective of the connection between AIDS and the gay community. However, it is possible that the individuals interviewed were not highly religious and that another population of religiously affiliated HIV caregivers may have had different responses. Certainly, more research is warranted in this area.

IMPLICATIONS

AU the caregivers who were interviewed reported positive changes in their lives, even those who were chosen for their low growth scores. Although this may be a methodological problem, there is also the possibility that some of the positive reckoning took place between the questionnaire and the interview, perhaps provoked by the administration of the questionnaire (Cadell & Sullivan, 2006). This time period was six to 12 months. This is a possibility worthy of further investigation and reminds social work practitioners to be mindful of listening for and willing to expand on personal growth in clients’ stories, even in circumstances where they least expect to hear it.

Furthermore, spirituality emerged as an important facet of growth. Although for many it was a pre-existing aspect of their lives, spiritual growth was experienced by many of those interviewed. Spirituality is a part of the conceptualization of posttraumatic growth (Tedeschi & Calhoun, 1995; Tedeschi et al., 1998) and positive by-products (McMillen, 1999; McMillen & Cook, 2003), but does not figure in stress-related growth (Park et al., 1996). This research underlines the centrality of spirituality to the experience of finding benefit in adverse circumstances. This serves as a reminder to social workers to assess spiritual resources in people with whom they work, especially in health care and with those dealing with adverse health circumstances (Canda, 2006).

In addition, the stories of devastation and distress that continue in the lives of the caregivers highlight both the revised model of stress and coping (Folkman, 1997) and the conceptualization of posttraumatic growth as involving ongoing distress in growth (Tedeschi & Calhoun, 1995). The people who were interviewed in this study continued to experience distress regarding their circumstances while still evidencing growth.

The results of this research have numerous implications for social work. The strengths perspective in social work (Saleebey, 2006) has contributed to the growing interest in examining health and coping by looking at positive outcomes instead of concentrating solely on negative ones. The incorporation of posttraumatic growth into social work can further advance this paradigm shift. In addition, social work has contributed greatly to understanding the psychosocial impact of AIDS. Although the research has concentrated on the experience of those who are infected, little research has been done about those who are left behind when someone dies of AIDS. This study contributes to the understanding of the positive experiences of those who grieve.

The demonstration of the importance of spirituality in posttraumatic growth is paralleled by a re-emergence of interest in the role of spirituality in social work practice (Canda, 1988, 1989; Cascio, 1999;Jacobs, 1997), as well as in other disciplines. For social work, this interest in spirituality is not a new one; however, the origins of the profession lie in religion. The first practitioners operated out of their own religious-based values of love and justice (Canda; Jacobs).

In conclusion, positive outcomes such as posttraumatic growth are an area of interest for social work. It contributes to the growing areas of concentration on strengths and to the re-emergence of spirituality in social work practice. HSW

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Susan Cadell, PhD, is associate professor, Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, 120 Duke Street West, Kitchener, Ontario N2H 1A 7, Canada; e-mail: scadell@u>lu.ca.This research was made possible by a Social Sciences and Humanities Research Council doctoral fellowship.

Original manuscript received May 16, 2005

Final revision received January 1, 2006

Accepted June 1, 2006

Copyright National Association of Social Workers, Incorporated Aug 2007

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