The sun always comes out after it rains: understanding posttraumatic growth in HIV caregivers.

The sun always comes out after it rains: understanding posttraumatic growth in HIV caregivers. Coping theory and research have long focused on dealing withnegative outcomes. Historically, little or no attention has been paid topossible positive outcomes. However, a growing body of literature hasindicated that individuals may experience certain benefits fromstressful life events. In recent years, various names have beensuggested for the occurrence of benefits from adversity. It has beenreferred to as "posttraumatic posttraumatic/posttrau��mat��ic/ (post?traw-mat��ik) occurring as a result of or after injury. post��trau��mat��icadj.Following or resulting from injury or trauma. growth" (Tedeschi & Calhoun,1995; Tedeschi, Park, & Calhoun, 1998), "stress-relatedgrowth" (Park, Cohen cohenor kohen(Hebrew: “priest”) Jewish priest descended from Zadok (a descendant of Aaron), priest at the First Temple of Jerusalem. The biblical priesthood was hereditary and male. , & Murch, 1996), and "positiveby-products" (McMillen, 1999; McMillen & Cook, 2003).Similarly, resilience has been defined as the ability to adapt to, copewith, and even be strengthened by adverse circumstances (Masten, Best,& Garmezy, 1990; Scannapieco & Jackson, 1996).Yet the concept ofgrowth goes beyond resilience in that it encompasses thriving: a gainthat surpasses a return to the prestressful state (Ickovics & Park,1998). People have been observed to benefit from experiences as diverseas natural disasters (Thompson, 1985), war (Aldwin, Levenson, &Spiro, 1994; Elder & Clipp, 1989), disability (Dunn, 1994), rape(Burt & Katz, 1987), incest (Silver, Boon, & Stones, 1983), andbereavement BereavementDefinitionBereavement refers to the period of mourning and grief following the death of a beloved person or animal. The English word 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 isexperienced by caregivers (Hooker, Monahan, Shifren, & Hutchinson,1992: Pearson, Verma, & Nellett, 1988; Pruchno & Resch, 1989;Stephens, Ogrocki, & Kinney, 1991 ; Zarit, Reever, &Bach-Peterson, 1980). Recently, however, the positive aspects of generalcaregiving have been gaining attention. Kramer (1997) called for theincorporation of positive aspects of caregiving into theories ofcaregiver adaptation. Cohen and associates (2002) investigated thepositive aspects of caregiving in 289 Canadian caregivers. They foundthat positive feelings about caregiving were associated with lessdepression, lower perceptions of burden, and better perceived health. In a qualitative study with 23 caregivers, Tebb (1994) found thatcaregivers identified feelings of being needed and useful, which gavemeaning to their lives as caregivers and allowed them to tolerate theirdifficult circumstances. The meaning that is derived in the copingprocess is crucial, especially in chronically stressful situations(Gottlieb, 1997). Meaning in caregiving, or the sense that people makeof their caregiving experiences, has also been explored with caregiversof frail older adults (Noonan & Tennstedt, 1997). It was one of manyfactors contributing to caregiver well-being. Higher levels of meaningin caregiving indicated lower levels of depression and higherstir-esteem. Caregiving in the context of AIDS is particularly stressful. Thestigma associated with the disease (Herek & Glunt, 1988; Powell-Cope& Brown, 1992) and the lived experience of losing friends.acquaintances, and family to HIV HIV(Human Immunodeficiency Virus), either of two closely related retroviruses that invade T-helper lymphocytes and are responsible for AIDS. There are two types of HIV: HIV-1 and HIV-2. HIV-1 is responsible for the vast majority of AIDS in the United States. disease make the situation additionallytraumatic (Klein, 1998; Nord, 1997; Ryan, Hamel Ham´elv. t. 1. Same as Hamble. , & Cho, 1998).Although the literature on AIDS caregiving and bereavement is scarce,especially studies that investigate positive outcomes, there is someindication that caregivers grow from the experience (Folkman, 1997;Garfield, 1995; Moskowitz, Folkman, Collette, & Vittinghoff, 1996;Viney, Crooks, Walker, & Henry, 1991). In a seven-year longitudinalstudy longitudinal studya chronological study in epidemiology which attempts to establish a relationship between an antecedent cause and a subsequent effect. See also cohort study. , positive meaning from caregiving was found to be an importantmediator ill experiencing depression by gay men caring for partners withAIDS (Folkman, Chesney, Collette, Boccellari, & Cooke, 1996). THEORETICAL FRAMEWORK ON STRESS AND COPING This research is part of the paradigm shift A dramatic change in methodology or practice. It often refers to a major change in thinking and planning, which ultimately changes the way projects are implemented. For example, accessing applications and data from the Web instead of from local servers is a paradigm shift. See paradigm. to incorporate positiveaspects of coping; it is grounded in the theoretical framework of stressand coping as proposed by Folkman (1997). The original model thatLazarus and Folkman (1984) proposed included positive emotion as apossible outcome only when there was a Favorable resolution to athreatening event. Folkman reworked the original model of transactionalcoping (Lazarus & Folkman) to incorporate existentialism existentialism(ĕgzĭstĕn`shəlĭzəm, ĕksĭ–), any of several philosophic systems, all centered on the individual and his relationship to the universe or to God. (Farran,1997) through the inclusion of meaning-making and positive psychologicalstates. The revised model includes the possibility of experiencingpositive emotion when there is no favorable resolution or no resolutionat all through a process of meaning making (Folkman). In addition, therevised model is designed to indicate the co-occurrence of positive andnegative 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 hasexplored factors that contribute to or enhance personal growth. Thepurpose of this research was to explore the personal growth experiencesof HIV caregivers and the specific dimensions of that experience thataffect them. METHOD The 15 participants were drawn from a larger Canadian studyreported on previously (Cadell, 2001, 2003; Cadell et al., 2003).Thecriterion for inclusion in the larger study was to have cared forsomeone who had died of AIDS-related complications. Recruitment wasaccomplished through posters in English and French in AIDS serviceorganizations, gay pride events, and AIDS conferences. Those whovolunteered completed a questionnaire that included a question askingwhether they were willing to be contacted for a follow-up interview. In preliminary analyses of the first 100 respondents to thequestionnaires in the original study, one-way analyses of variancedemonstrated a significant difference by gender on the two measures ofpersonal growth: Stress-Related Growth Scale (SRGS SRGS Speech Recognition Grammar SpecificationSRGS Stimulated Raman Gain SpectroscopySRGS Survivable Relay Ground Stations ) (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 post hoc?adv. & adj.In or of the form of an argument in which one event is asserted to be the cause of a later event simply by virtue of having happened earlier: tests indicated that significant differences occurred among all threegenders (male, female, and transgender). Because of the differences, the individuals for the qualitativeportion of the study were selected by their gender. Participants werealso selected by their PTGI and SRGS results to represent both ends ofthe spectrum of growth scores. In addition, participants were selectedby location so that face-to-face interviews could take place.Ultimately, the entire population of transgender individuals from thesurvey (n = 3) was interviewed. Interview Protocol The semistructured interviews followed an interview schedule (seeTable 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,Acree, & Folkman, 1999). Each interview began by asking theparticipant to talk about the person who had died and continued withopen-ended questions about changes in the participant's life sincethen. Sample Fifteen people (see Table 2) who had indicated that they would bewilling to do a follow-up interview were contacted; all agreed to beinterviewed. 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, orfamily member. Although some worked in AIDS organizations, those who didwere interviewed about their personal relationships. Procedures The interviews were conducted in large Canadian cities in the placeand language (French or English) of the participant's choice. Sevenwere interviewed in public spaces, and eight were interviewed in theirown homes. Interviews were audiotaped with the participant'swritten permission and then transcribed verbatim. Consent forms statedthat the study had been approved by an ethics board and informed theparticipants that they could terminate the interview at any time theywished without personal consequences. Twenty dollars remuneration wasprovided to each person. Analysis The analysis was conducted using grounded theory with open, axial,and selective coding (Lincoln & Guba, 1985; Strauss & Corbin,1990). Open coding was used to articulate themes. The second phase ofanalysis, axial coding Axial coding is the disaggregation of core themes during qualitative data analysis. ReferencesGatrell, A.C. (2002) Geographies of Health: an Introduction, Oxford: Blackwell. , involved evaluating the connection among thethemes. The final themes were identified in the third stage, selectivecoding. Member checks were performed with those participants who werewilling to provide feedback; the resulting information was incorporatedinto the findings. RESULTS All of the individuals interviewed were undergoing or hadexperienced a process of finding meaning in their bereavement, in HIVdisease in general, or both. The themes that emerged were distress,posttraumatic growth, humor, support, spirituality, fear of death, andthe 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. Respondentsnoted that experiences related to the declining health or death of lovedones 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: "Iwouldn't accept that she was gone because I had taken care of herfor 2 1/2 years before she left me, and we were so close." Othersspoke of distress regarding changes in loved ones' personality andbehaviors. When Sarah's partner began suffering from dementia, itcaused her pain when the dementia reduced his ability to expressfeelings and he could no longer express his love for her. Multiple losses are common in the context of AIDS. Many of thoseinterviewed had experienced the death of numerous friends or familymembers. Regret also played a part for some interviewees. For instance,Michael assisted his partner in dying. Although Michael was sure at thetime that he was doing the right thing for both of them, he came toregret his decision enormously. Posttraumatic Growth All individuals interviewed had been changed by their experience ofcaring for someone who had died of AIDS. All the reported changes werepositive even in those who had low scores oil the PTGI and the SRGS.Many grew as they came to accept and like themselves, some for the firsttime. Others found that they gained strength from the experiences ofcaring. For some, the benefits came from the impact of HIV disease; AIDScannot be separated from caring about those who are infected. Brendatalked about working in the AIDS movement as well as her consciouschoice to grow as a human being. Carol, who was HIV-positive, consideredthat if she were cured she would be "devastated" as AIDS hadenriched her life. Gary thought that his volunteer care team experienceshad made him "a better person, a brighter person." Brendaspoke 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 relatedhumorous anecdotes about their caregiving and bereavement experiences.Even as she was recounting her partner's last hours, Sarah laughedat a fond memory of him. For Michael, humor symbolized the end of griefand closure about his partner's death. Humor also worked to restore dignity and provide support. It wasconsidered a coping mechanism coping mechanismPsychiatry Any conscious or unconscious mechanism of adjusting to environmental stress without altering personal goals or purposes , especially for those working in AIDSservice organizations, who sometimes used dark humor. However, on the basis of his volunteer experience, Gary cautionedthat humor must be used carefully as it can compromise confidentialityeven while relieving stress. Support Caregivers experienced support from many sources. Family provided agreat deal of support for some of the interviewees; several participantsstated that their mothers were extremely supportive of them. Brendaenormously appreciated the support of her mother, her daughter, and herpartner, who had served in the war in Vietnam: "He has tremendousunderstanding of multiple loss so has been a remarkable, remarkablesupport to me." Sarah was a transsexual trans��sex��u��aln.A person who strongly identifies with the opposite gender and who chooses to live as a member of the opposite gender or to become one by surgery.adj.1. Of or relating to such a person.2. woman whose own family had not beensupportive of her. However, her partner's mother had been verysupportive; she "was like totally amazed a��maze?v. a��mazed, a��maz��ing, a��maz��esv.tr.1. To affect with great wonder; astonish. See Synonyms at surprise.2. Obsolete To bewilder; perplex.v.intr. by me and the way I wouldhelp her son. "The two women remained in touch after Sarah'spartner 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 supportwere reduced. Albert stated that he did not consider himself to have alarge circle of friends; although the relationships he had were strong,he would have liked to have had more. Participants' friendships notonly provided support, in some cases they did more. For instance,Michael's friends took him overseas on holiday. Sarah'sfriends found her a new home when she needed it. Carol characterized thefriends who were the most helpful as those who listened. Support was also sought from professionals, although not all werehelpful: Michael said he had a psychiatrist who would doze off duringsessions. Michael did, however, have some helpful experiences. Heparticipated in a caregiver group at an AIDS service organization AIDS service organizations are community based that provide community support. While their primary function is to provide needed services to individuals with HIV, they also provide support services for their families and friends as well as conduct prevention efforts. aswell as an outpatient psychiatric group. Michael also credited anotherprofessional: "Throughout this whole thing what was helpful was tohave the same psychiatric nurse, Rita. She kind of kept megrounded." Spirituality Overall, the interviewees held a strong sense of spirituality. Manyof the participants addressed issues of spirituality spontaneously.Others identified spiritual themes when asked whether religion orspirituality played a role in their experiences. Albert stated that hiscaregiving has helped him connect with his Native culture. Many of those interviewed differentiated between religion andspirituality. Brenda found that her work in an AIDS service organizationwas very spiritual--"walking beside somebody on ... the lastjourney of their lives"--even though she identified as not beingreligious. Carol did not wish to discuss spirituality as she found ittoo personal. She did, however, identify that she believed that"there's something somewhere" and that this convictionhad been a constant in her life before and throughout her process ofchange and growth with HIV disease. Beliefs about how the world should function also emerged. Brendabelieved that the people who had died would repay her for her care bytaking care of one another. Gary held strongly his value of not leavingpeople alone to die. This extended to himself, and he trusted thatothers would be there for him when the time came. Spirituality was also expressed in the creation of rituals andmemorials. Albert described his personal ritual of traveling to placeswhere his friends would want to go: "I bring a picture of them, andI let it float in the water. I let it go, you're here now."Dawn talked about a rune runeAny of the characters within an early Germanic writing system. The runic alphabet, also called futhark, is attested in northern Europe, Britain, Scandinavia, and Iceland from about the 3rd century to the 16th or 17th century AD. she wore for strength; she also had a spellbottle that was given to her by a Wiccan friend. She used it to prepareherself for difficult tasks the following day. Brenda discussed theimportance of making her office a positive space for herself. Shememorialized her friends and clients who had died by having pictures ofmany of them on her wall. Many interviewees had incorporated deceased individuals into theirlives in new ways. Gary had a sense that those he had cared for whilethey were dying were now keeping him safe. Sarah felt that her partnerwas not very far away and talked about how she continued thatconnection: "I went over and I held his picture and I went, Tm notfeeling very good.' So what it is doing is having a conversationwith him." Fear of Death Because the people who participated were all bereaved caregivers,many were grappling with existential issues. Several intervieweesspontaneously talked about the changes in their feelings about death.Brenda offered that she was no longer afraid of death because of theprocess of transformation through which she has gone. Dawn, whose fatherdied when she was young, was still terrified ter��ri��fy?tr.v. ter��ri��fied, ter��ri��fy��ing, ter��ri��fies1. To fill with terror; make deeply afraid. See Synonyms at frighten.2. To menace or threaten; intimidate. of dying and of beingpresent when someone else was dying. However, she had become morecomfortable expressing herself about her fears and her losses. Albertspoke about being HIV-positive himself: "Now I have no fear ofdeath myself because I've seen so much of it. It's made me astronger person." Where Support and Spirituality Intertwine Spirituality and support overlapped for many of the HIV caregiversinterviewed. Albert's spiritual connection strengthened him toforgive his parents for the abuse that he said he experienced, therebycreating a new source of support for himself. "I forgave for��gave?v.Past tense of forgive.forgaveVerbthe past tense of forgiveforgaveforgive both myparents for all the abuse and sexual abuse.... That made me evenstronger." Many of the caregivers derived significance from thecare that they were able to provide to the person who died of AIDS. Thissearch for meaning was essentially a spiritual journey and provided asource of support for those who had experienced it. Brenda derived muchsignificance out of her role as supporter, which in turn was a source ofstrength for her: "I'm absolutely convinced that this issomething that I was meant to do." Sarah gained an increased sense of significance and strength fromher ability to care for her partner. After his partner died, Michael gota dog. Not only was the dog a source of support and affection, it alsoreinforced Michael's ability to provide care and made him realizethat he had been "a good caregiver" for his partner. DISCUSSION This research explored the growth experiences of HIV caregivers andthe elements that influenced the process of growth. Participants werechosen by scores of growth from both ends of the high--low spectrum fromtwo widely used survey instruments. Despite their diverging scores,these caregivers each had experienced personal growth in some form oranother. Strikingly, distress remained high even for those who seemed tohave demonstrated the most growth. All of the participants recountedpainful stories of their experiences along with the positive. Theco-occurrence of positive and negative emotions as well as meaning-basedcoping are both new elements added to the transactional model of stressand coping by Folkman (1997).These data provide a key illustration ofthe validity of those aspects of the revised model. Spirituality came up spontaneously in many interviews but wasaddressed in all. Canda (1989, p. 573) defined spirituality as "thebasic human drive for meaning, purpose, and moral relatedness amongpeople, with the universe, and with the ground of our being." Thesecaregivers expressed a strong sense of connection to the world and tothose who had died. Many distinguished between spirituality andreligion. Many had incorporated the deceased individuals into theirlives in new ways, and several had established rituals to celebratethose who had died. The caregivers sought meaning in their relationshipswith those for whom they had cared. This search for meaning isessentially a spiritual journey and provides a source of support forthose who experience it. For many, the intertwining of support andspirituality led to new growth. Some were able to work throughexperiences from their past. Others were able to understand theirconnections to the world in a new way. Spirituality plays an important role in the creation of meaning incaregiving (Richards & Folkman, 1997). Religion offers "anultimate vision of what people should be striving for in their livesindividually and collectively" (Pargament & Park, 1995, p. 15).The spiritual quests and connections identified by the 15 individualsinterviewed 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 ultimatedesignation" (Pargament & Park, 1995, p. 15). Many of theinterviewees were emphatic about rejecting the map as prescribed inreligion. Pargament and Park (1997) suggested that religious coping religious coping,n means of dealing with stress (which may be a consequence of illness) that are religious. These include prayer, congregational support, pastoral care, and religious faith. provides an answer in the face of human insufficiency INSUFFICIENCY. What is not competent; not enough. that nonreligiouscoping does not. The HIV caregivers interviewed may have confronted thelimitations of humans through spiritual coping rather than religiouscoping. The differentiation of spirituality and religion by theinterviewees may be reflective of the connection between AIDS and thegay community However, it is possible that the individuals interviewedwere not highly religious and that another population of religiouslyaffiliated HIV caregivers may have had different responses. Certainly,more research is warranted in this area. IMPLICATIONS All the caregivers who were interviewed reported positive changesin their lives, even those who were chosen for their low growth scores.Although this may be a methodological problem, there is also thepossibility that some of the positive reckoning took place between thequestionnaire and the interview, perhaps provoked by the administrationof the questionnaire (Cadell & Sullivan, 2006).This time period wassix to 12 months. This is a possibility worthy of further investigationand reminds social work practitioners to be mindful of listening for andwilling to expand on personal growth in clients' stories, even incircumstances 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, spiritualgrowth was experienced by many of those interviewed. Spirituality is apart of the conceptualization con��cep��tu��al��ize?v. con��cep��tu��al��ized, con��cep��tu��al��iz��ing, con��cep��tu��al��iz��esv.tr.To form a concept or concepts of, and especially to interpret in a conceptual way: of posttraumatic growth (Tedeschi &Calhoun, 1995; Tedeschi et al., 1998) and positive by-products(McMillen, 1999; McMillen & Cook, 2003), but does not figure instress-related growth (Park et al., 1996). This research underlines thecentrality of spirituality to the experience of finding benefit inadverse circumstances. This serves as a reminder to social workers toassess spiritual resources in people with whom they work, especially inhealth care and with those dealing with adverse health circumstances(Canda, 2006). In addition, the stories of devastation and distress that continuein the lives of the caregivers highlight both the revised model ofstress and coping (Folkman, 1997) and the conceptualization ofposttraumatic growth as involving ongoing distress in growth (Tedeschi& Calhoun, 1995).The people who were interviewed in this studycontinued to experience distress regarding their circumstances whilestill evidencing growth. The results of this research have numerous implications for socialwork. The strengths perspective in social work (Saleebey, 2006) hascontributed to the growing interest in examining health and coping bylooking at positive outcomes instead of concentrating solely on negativeones. The incorporation of posttraumatic growth into social work canfurther advance this paradigm shift. In addition, social work hascontributed greatly to understanding the psychosocial impact of AIDS.Although the research has concentrated on the experience of those whoare infected, little research has been done about those who are leftbehind when someone dies of AIDS. This study contributes to theunderstanding of the positive experiences of those who grieve. The demonstration of the importance of spirituality inposttraumatic growth is paralleled by a re-emergence of interest in therole 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 ofthe profession lie in religion. The first practitioners operated out oftheir own religious-based values of love and justice (Canda; Jacobs). In conclusion, positive outcomes such as posttraumatic growth arean area of interest for social work. 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It is named in honour of Sir Wilfrid Laurier, the seventh Prime Minister of Canada. , 120 Duke Street West,Kitchener, Ontario N2H 1A7, Canada; e-mail: scadell@wlu.ca. Thisresearch was made possible by a Social Sciences and Humanities ResearchCouncil The Social Sciences and Humanities Research Council of Canada (SSHRC) is an arm's length Canadian federal funding agency.[1] Offering numerous funding programs with a 2006-2007 budget of CAN$306 million for grants and scholarships, and CAN$538 overall,[2] doctoral fellowship.Table 1: Interview ScheduleDemographic Information* Age* Employment* Education* Sexual orientation* HIV status* How many friends and family have you lost to HIV/AIDS?Description of Caregiving Experience* Relationship to the deceased person* Would you tell me about [care recipient]?* How have you been changed by the experience of caregiving and bereavement?* What has helped you to recover?* What has not helped?* Did you and do you have support from family mid friends?* Does spirituality help you in any way?* Is there anything about yourself that you believe helped or hindered the process?Table 2: Caregiver Characteristics (N = 15) Male Female TransgenderVariable (n = 8) (n = 4) (n = 3)Interview language English 2 3 3 French 6 1HIV status Positive 6 0 3 Negative 2 4 0Sell-identified sexuality Gay 8 1 2 Lesbian Bisexual 1 Heterosexual 2 1Growth scores High 4 2 1 Low 4 2 2