EXISTENTIAL ISSUES AND COPING: A QUALITATIVE STUDY OF LOW-INCOME WOMEN WITH HIV

Psychology and Health |-»February 2005, Vol. 20, No. 1, pp. 93-113 | <

EXISTENTIAL ISSUES AND COPING: AQUALITATIVE STUDY OF LOW-INCOME

WOMEN WITH HIV

AVIVA M. MAYERS''*, NANCY A. NAPLES"and RANDI DYBLIE NILSEN'=

^Department of Social Work, Women's College Hospital, 76 Grenvitle St., Toronto,Ontario M5S 1B2, Canada; ^Department of Sociology and Women's Studies Program,

University of Connecticut; '^Norwegian Centre for Child Research,Norwegian University of Science and Technology

(Received 28 August 2003; In final form 05 May 2004)

We examined various themes that arose from interviews with nine HIV-infected women, eight of whom werereceiving public assistance at the time of the interview and were mothers to HIV-infected children. Drawing onan existential-humanistic perspective, the first author designed semi-structured interviews that would capturethe extent to which the mothers experienced existential loneliness. A thematic cross-case content analysis ofthe interview material was used to analyze the data and revealed that the mothers struggled with a rangeof existential issues that included guilt, responsibility and choice; helplessness and control; death anxiety,lonelinesss and isolation; and meaning and authenticity. With respect to psychological coping strategies,our findings indicated that despite the added burdens of poverty and a stigmatizing disease, these womenwere able to turn their health crisis into a growth-producing and meaning-giving experience. More specifically,their children came to serve as a crucial meaning-giving force in their lives, a force that motivated them toforge ahead and meet with courage the existential challenges they faced.

Keywords: Women with HIV; Qualitative; Existential issues

The greatest proportion of AIDS cases in the US continues to be amongst those in the25-44 years age bracket, many of whom are impoverished women from minoritygroups at the height of their childbearing years (Ellerbrock, Bush, Chamberland andOxtoby, 1991; Hackl, Somlai, Kelly and Kalichman, 1997; Osmond et al., 1993).Despite the fact that women represent a significant portion of those infected by the epi-demic, and that the disease has enormous ramifications for them as many have youngchildren, there remains a paucity of studies on their psychosocial functioning (Catalanet al., 1996; Ingram and Hutchinson, 2000; Lawless, Kippax and Crawford, 1996;Simoni and Cooperman, 2000). Many women may find it difficult to focus sufficientlyon their own medical needs due to the confounding effects of co-morbid psychiatricconditions (e.g. depression, substance abuse) and the competing needs of children

•Corresponding author. E-mail: [email protected]

ISSN 0887-0446 print: ISSN 1476-8321 online © 2005 Taylor & Francis Group LtdDOI: 10.1080/08870440410001722949

94 A.M. MAYERS et at.

and partners who may themselves be infected (Butz et al., 1993). Those who aremothers are often forced to deal with the effects of the illness as patient and caretakersince they and their child may be diagnosed simultaneously (Rose and Clarke-Alexander, 1996). They may carry the responsibility for care of their infected and unin-fected children alone since many are single parents. Infection with the virus can deal anenormous blow to their sense of selves as reproductive beings since motherhood mayprovide an especially important source of self-esteem for women from disadvantagedbackgrounds (Kurth, 1993).

In addition to the particular issues that women who are mothers face, the status ofmany women who are living in poverty or who are from minority groups often triggersheightened feehngs of marginalization prior to the onset of HIV infection and manyfactors associated with having the virus may compound these feelings (Aranda-Naranjo and Davis, 2000; Hackl et aL, 1997). Thus in an effort to address the gap inthe literature on HIV-infected women with children and the debate on their functioningin response to this psychosocial and health crisis in their lives (Ingram and Hutchinson,1998, 1999, 2000; Marcenko and Samost, 1999), the first author embarked on an in-depth qualitative interview study of nine HIV-infected mothers whose children attendeda pediatric AIDS clinic in a large hospital in New York city.

The first goal of this study is to understand how this neglected group of mothers copewith the many uncertainties that HIV infection has raised in their lives, in particular thepossibility that they, their child or other family members may face a foreshortened life.'Many authors have noted that seriously ill people can no longer fiee from the feelingsaroused in facing death. Therefore, understanding how this particular group of motherscope with this experience could illuminate such experiences for others, enable healthcare professionals to intervene more appropriately, and highlight some of the waysin which the remainder of the lives of the seriously ill can become meaningful(Feifel, 1960; Zack, 1985).̂

The second goal concerns our attempt to bridge a gap in the literature in relation tothe psychological adaptation of low-income mothers with HIV. This goal emerged fromtwo sources. First, a growing body of literature has reported on the ability of the HIV-infected population to forge a path to psychological growth despite the added burdensof their illness (Davies, 1997; Dunbar, Mueller, Medina and Wolf, 1998; Leiberich et al.,1997; Siegel and Scrimshaw, 2000; Van Servellen, Padilla, Brecht and Knoll, 1993).However, it has been noted that a preponderance of this literature has largely employedsamples of educated, middle class white men, neglecting the variations induced bygender, class and culture (Siegel and Scrimshaw, 2000). Green, Platt, Eley and Green(1996) found in their mixed sex sample that seropositive people do not experiencemore distress than seronegative people (though an HIV diagnosis may induce periodic

'The widespread use of highly antiretroviral treatment (HAART) since 1996 has significantly decreased theincidence of AIDS (Anderson et al., 2000). In addition, mortality rates have decreased from 90 to 23%(Pezotti et al., 1999). This offers more reason to be hopeful since new treatments may prevent progressiveimmunosuppression, prolong life and decrease risks of transmission. However, their long-term effectivenessis unknown and in the short term they may induce adverse drug effects among 30-70% of HAART recepients(Anderson, Grassley and Garnett, 2000), impair quality of life and limit future therapy options should resist-ance develop (Feinberg and Maenza, 2000). In relation to children, new treatments have dramatically cut therates of HIV transmission from mother to child from approximately 27% to between 9 and 18% depending onwhen zidovudine prophylaxis was commenced (Wade et at., 1998). However, uncertainty remains for mothersconcerning transmission of the virus to the child or if the child remains seronegative, whether the child willultimately be orphaned.^Feifel (i960) reported on the latter phenomenon in relation to dying patients in general.

EXISTENTIAL ISSUES AND COPING 95

Stress). Their findings suggest that the psychological burden of an HIV diagnosis maybe overestimated. Several studies have extended this idea and noted the meaning-giving,even "life-transforming," aspects of an HIV diagnosis (Schwartzberg, 1993; also seeBower, Kemeny, Taylor and Fahey, 1998; Coward and Lewis, 1993; Crossley, 1998;Fryback and Reinert, 1999; Lamendola and Newman, 1994).

Second, the findings of a previous quantitative study indicated that a group of 42HIV-infected mothers seemed to be coping better than had initially been anticipatedby the first author based on her prior relationship in a pediatric AIDS clinic withmany of the mothers in the study (Mayers, Khoo and Svartberg, 2002). The resultsof this study indicated that symptomatic women had only moderately elevated levelsof existential loneliness as measured with the Existential Loneliness Questionnaire(ELQ-P). This study builds on this earlier quantitative analysis to further demonstrateand extend the power of an existential-philosophical perspective for understanding thepsychological coping strategies of HIV-infected persons (Crossley, 1998; Davies, 1997;Schwartzberg, 1993). Certain concepts that originate in the existential-philosphicalmovement and seem particularly relevant to the lives of HIV-infected mothersinclude existential anxiety, loneliness and isolation; helplessness and control; choice,responsibility and guilt; and meaning and authenticity.

EXISTENTIAL PHILOSOPHY AS A TOOL FOR SOCIALPSYCHOLOGICAL ANALYSIS

The theoretical underpinnings and philosphical perspective of this study emanate fromthe existential movement, which began in the 19th century. The first two waves of thismovement were strongly infiuenced by the work of Kierkegaard and Nietzche. This wassucceeded by the third and contemporary phase of existentialism that followed WorldWar I (May and Yalom, 1995). Husserl formed the foundation of this phase of themovement, one that is described as occuring on the "revolutionary edge of modernart, hterature and thought". May (1958a, p. 17) notes that existentialism was bornduring a time of cultural crisis, where individuals were thrown into spiritual and emo-tional turmoil. Thus as with psychotherapy, existentialism concerned itself with individ-uals who were in crisis and characterized human beings as always evolving andchanging through these crisis. In light of this, it focused on the individual's need tostrive for a "heightened self-consciousness" that is an awareness of his/her existenceon a "new basis" with a new and more solid conviction (May, 1958a, p. 17).

Existential philosophy is unusual in its focus on the confrontation of death and themeaning this gives life and illuminates many paradoxes that are related to negative lifeevents (Crossley, 1998; Greening, 1971, p. 51). This includes the idea that inner growthis often preceded by suffering and despair (Frankl, 1967) and in fact these are necessaryingredients in forging more meaning in one's life (King, Valle and Citrenbaum, 1978).For example, it notes that as one becomes aware of one's own mortality, one takes on a"vitality and immediacy" which includes the experience of a heightened consciousnessof oneself, the world and others around one (May, 1958b, p. 48).

For the purposes of this study, we drew on several key constructs that derivefrom existential philosophy: existential loneliness, existential anxiety, helplessness,guilt and authenticity. Existential loneliness is defined as an everpresent feelingof aloneness experienced by human beings (Moustakis, 1961; Vanden Bergh, 1963;

96 A.M. MAYERS et al.

Von Witzleben, 1958), which it is assumed one defends against for much of the time,and for which no permanent remedy can be found. Since death and existentialloneliness are intertwined to grapple with one implies confronting the other(Mayers and Svartberg, 2001). Existential anxiety results from the threats imposed onus by the human condition, in particular the awareness that we are finite (Frankl, 1967,p. 276). The way in which we manage this anxiety will determine whether our lives willbe fulfilled or wasted, for confrontations with such threats, in particular death, have thepower to provide a massive shift in the way we live our hfe (Frankl, 1967, p. 377). Theextent to which one experiences helplessness or manages to develop feelings of controlalso contributes to one's level of anxiety. While guilt over past actions and the fact ofone's death both pose threats, these may also have positive repercussions for accordingto Frankl (1967), it is in the face of these that one is motivated to change one's life, andact in a more meaningful way. Authenticity occurs as one becomes aware of one'spotential and acts on it (Bugental, 1965, p. 45).

METHODS

The nine HIV-infected mothers interviewed for this study were recruited from an earlierquantitative study conducted by the first author (Mayers et al., 2002). In view of thedebate in the hterature concerning the limitations of quantifying existential experiences,we wished to complement and add more depth to the results of the earlier study(cf. Patton, 1990; Schwartzberg, 1993). In the initial phase, the first author carriedout semi-structured interviews that ranged from one to one and a half hours inlength. In contrast to the former quantitative study that was carried out in a clinic,seven out of nine of the interviews were conducted in the participants' "natural setting,"that is their homes. This interview setting allowed them to feel freer to share theirexperiences, thereby strengthening the "ecological validity" (Bronfenbrenner, 1979)of this study. Furthermore, conducting research on the participant's terrain can beseen to build a more equal relationship between impoverished women and the educatedmiddle-class female researcher who does not often frequent the homes of familieslocated in poorer neighborhoods of cities such as New York. However, in two cases,the respondents were unable to meet in their homes. One requested that the interviewbe conducted at the hospital because it was more convenient for her. This situationmay, in this case, have contributed to a greater feeling of loyalty and possiblycompliance. In the second case, the respondent was living with an aunt who did notknow about her HIV status and therefore, she requested that the interview beconducted in a different location. In this case, the interview was held at private clinicoffice close to her home. Regardless of the interview location, every attempt wasmade to assure each woman that her responses were confidential and would have noeffect on her access to treatment.

Six of the respondents were previous clients of the first author, who had beenemployed earlier as a social worker in the pediatric-AIDS clinic to conduct individualcounselling sessions and support groups with parents and families of HIV-positivepatients. The other three respondents were patients in the chnic but were treated byother members of the clinical staff. The chnical relationship of the first author withthe six respondents had been terminated before the participants were approached forpossible participation in the study. The interviewer's prior relationship with these


mothers in the clinic helped to establish a relationship of trust. As a consequence of herrole in the clinic, the first author was familiar with all of the participants either directlyor indirectly through case management meetings. Patients who were identified for par-ticipation in the study were selected based on meeting one or more of thefollowing criteria; an assessment of their anticipated willingness to speak about theirexperience; their openness to a home visit or their ability to meet Mayers in a neutralplace. In that sense, it constituted a select group.

The interview guide was initially developed to explore the issue of whether thesemothers experienced existential loneliness and how it was manifest in their lives. Theinterviewer's questions revolved around the participant's experience of loneliness,thoughts about death and the meaning of life, preoccupations with their HIV infection,and the quality of their relationships since the onset of their HIV infection. Thequestions were sufficiently broad and open-ended to give the women an opportunityto direct the dialogue and raise concerns that were not anticipated by the researcher.

In the next phase, Mayers transcribed the audiotaped interviews. The initialexamination of the interviews revealed that the material was rich in relation to severalexistential issues rather than being confined to the narrower issue of existentialloneliness. As Kvale points out, the open-ended design permits "the participants notonly [to] answer questions prepared by an expert, bu t . . . [to] formulate in a dialoguetheir own conceptions of their lived world" (Kvale, 1996, p. 11). One of the strengthsof qualitative interviewing lies in its ability to "describe and understand the centralthemes the participants experience and live toward" (Kvale, 1996, p. 29). Therefore,we decided to shift our previous narrower focus to a broader one that reflected whatwe had learned from the interviews. Changing the research focus to the respondents'concerns is a fiexible methodological approach often employed in qualitative research(cf. Glaser and Strauss, 1967; McCracken, 1988; Strauss and Corbin, 1990). It is alsoa practice that can be seen to place women from minority groups in a more empoweringposition in research (cf. Oakley, 1993). This new focus permitted us to examine howthese women were able to confront the fact of their death, and despite very difficultlife circumstances, regain a sense of control over their lives, and forge a more authenticand meaningful existence.

Rather than presume a neutral stance during the analytic process, researchers' effortsto interpret the meanings of the interviews are guided by particular theoreticalframeworks (Kvale, 1996; Naples, 2003). Feminist scholars have been especiallypersuasive about this feature of methodological practice (Gluck, Berger and Patai,1991). A thematic cross-case content analysis of the transcribed interviews was con-ducted, guided by an examination of the interplay between the participants' concernsand the relevant existential themes in the literature. These included existential anxiety,loneliness and isolation; responsibility, choice and guilt; helplessness and gainingcontrol; and authenticity and meaning. It is important to note that many of theseconcepts overlap and are interconnected to a certain degree.

In this analysis of the interview data, we drew from both the theoretical literature(Corey, 1982; Frankl, 1967; May and Yalom, 1995) and the empirical studies ofHIV-infected groups (Crossley, 1998; Schwartzberg, 1993; Semple et al., 1993; Siegeland Scrimshaw, 2000). We employed both existential philosophy and psychoanalyticconcepts, since they are often intertwined (Frankl, 1967; King et al., 1978; Yalom,1980), in order to better understand the psychological experiences of the mothers.The process also included an ongoing discussion between two of the authors concerning


the validity of the interpretation of the analysis. This discussion can be seen as a"communicative validity," which involves testing the validity of knowledge claims ina dialogue (Kvale, 1989, p. 83). We suggest that the analysis can be viewed as an"analytic generalization," which is designed to increase the ability of the investigatorto generalize the results to a broader theory (Yin, 1989, p. 44). In the presentation ofthe following analysis, we attempt to maintain a close relationship between thetheory and the empirical data. The quotes were selected in order to highhght particulartheoretical points and provide a deeper understanding of the feelings and experiences ofHIV-infected women. We have chosen to give much space to the voices of this silentgroup of women, in order to add a necessary dimension to a body of research literaturethat is dominated by men's experiences.

Participants

The first author contacted a subsample of mothers who had participated in the largerquantitative study of 47 HIV-I- women, a majority of whose children were followed fortheir HIV status in a large teaching hospital in New York city (cf. Mayers et al., 2002).They were selected as they seemed to have a heightened experience of existentialloneliness as determined by the existential loneliness scale (ELQ-P), an instrumentthat was developed by the first author. Recruitment was more difficult than initiallyanticipated as many women from the initial larger sample in the earlier study hadeither died, changed phone numbers, disconnected phones or moved and were lost tofollow-up.

The nine women in this qualitative interview study ranged in age from 29 to 48 years.Three were black, three were white and three were Hispanic. All were heterosexual.Their marital status included two women living with male partners, four single, twowidowed and one separated. With respect to education, four women had some highschool education, one was a high school graduate, three had some training beyondhigh school and one had graduated from college. The economic circumstances ofeight women who received public assistance prior to infection with HIV had remainedthe same since the onset of the infection. The ninth woman had greatly improved hereconomy since diagnosis and was now employed in a white collar job. One motherhad one child, two had two children, five had three children and one had five children.All mothers, except for the mother with five children, had been living with their childrenat the time of this study. Two children were under the age of five years, seventeen werebetween the ages of five and twelve years and the remaining six were over the age oftwelve. Two mothers had given birth to their children since diagnosis. All womenlived in one of the five boroughs of New York city. All of the informants are givenfictitious names to preserve anonymity.

All mothers had been diagnosed with the HIV virus between four and eleven yearsprior to this study. This fact is one of the unique features of this study when comparedto the few previous studies on this population. For example, in Hackl et al.'s (1997)study of eight women with HIV living in the Milwaukee area, the sample consistedof participants who, on average, had only been aware of their diagnosis for 11months. This could account for their finding that concern about the stigma associatedwith the diagnosis was the primary concern expressed by the women in their sample(also see Ingram and Hutchinson, 1998; Marcenko and Samost, 1999). In a study ofwomen who were not defined as especially at risk of AIDS, Grove, Kelly and Liu


(1997) found that they had more control over when to disclose their illness and were lesslikely to be defined as "deserving" of the disease. Their higher socioeconomic status andother dimensions of "symbolic capital" (Bourdieu, 1986) contributed to their greaterability to manage stigma and control information about their illness. As Grove et al.(1997) argue, "unlike members of existing stigmatized groups, they are not theirlabel" (emphasis in original, p. 327). Ironically, this also led them to be overlooked inthe HIV screening.

In our study, the women did not possess the symbolic capital that would provide themwith the ability to manage the stigma associated with having HIV and AIDS.Furthermore, all nine women had given birth to an HIV-infected child though one ofthe children had seroreverted during infancy (and was no longer HIV-positive). Fivemothers had been former substance abusers and had contracted the virus from drug-or alcohol-related activities, while four had contracted the virus from a sex partner.None still lived with the partner who had infected them, though in the case of threewomen the man who had infected them was also the father of their infected children.Two participants had an AIDS diagnosis (as defined by the U.S. Centres for DiseaseControl and Prevention, based on a T-cell count below 200), six denied any symptoma-tology while three identified one or more symptoms. Eight participants were active andmobile, while one had intermittent mobility problems.

In one of the few studies on HIV-positive women's reproductive and motheringexperiences, Ingram and Hutchinson (2000) interviewed 20 HIV-positive women. Theparticipants in the study were aware of their HIV status for an average of three years.Drawing on the theoretical perspective of the double bind theory (Bateson, Jackson,Haley and Weakland, 1956) the authors explain that; "Our society expects women tobe mothers, yet at the same time, it negatively judges HIV-positive women whochoose to become pregnant or refuse to abort an existing pregnancy" (p. 122). Mostof the women already had children and reported that their health problems interferedwith their effectiveness as mothers. However, they also reported that, despite the chal-lenges they faced as mothers with HIV, their children provided them with a "powerfulsense of life-sustaining love" and all the mothers emphasized "the importance of theirchildren in their lives" (p. 125). Our study further demonstrates the meaning-giving sig-nificance of children for HIV-positive mothers. More importantly, we demonstrate thevalue of an existential-philosophical framework for understanding the complex role ofmothering in the lives of HIV-positive women. Additionally, this approach takes usbeyond the framework of the "double bind" to explore the psychological coping strate-gies developed by HIV-positive mothers.

FINDINGS

Existential Anxiety, Loneliness and Isolation

A diagnosis of HIV infection, which faces one with the possibility of one's own earlydeath would seem likely to arouse an inordinate amount of death anxiety and existentialloneliness, as it challenges one's world in a fundamental way. It has been said thatexistential anxiety is triggered by boundary situations (Jaspers, 1970), the mostpowerful of which is death - our own, or that of others. Boundary situations havebeen described as experiences that confront one with "frightening threats of being"


(Ottens and Hanna, 1998) that may "wedge open" one's defenses causing core existentialissues such as existential isolation (often experienced as existential loneliness) to emerge(Yalom, 1980; Ottens and Hanna, 1998). However, in line with the paradoxical nature ofexistential theory, many women in this sample described various factors which helpedthem to manage these feelings in an adaptive way, once they had overcome the initialshock of the diagnosis.

The first factor pertains to the particular history and source of HIV-infection for amother. Those mothers who had contracted the virus from former partners recalledmore terror initially in facing the fact of their infection than mothers who had beenformer substance abusers. For example, Ronnie described the utter panic and psycho-logical disorganization this news induced in her:

"I was crying and in shock because t wasn't the person who was on drugs and was sleeping around.I didn't feel I deserved it I was outraged, 1 was mad, I was scared too."

For her this was heightened by the fact that her daughter was also infected. She said:

"I had a child and when t found out about her it was scary. In the beginning I thought about it a lot.I didn't want to die, then I'd say who was gonna die first."

At that time a diagnosis of AIDS was associated with certain death and she said that she"felt like putting a gun to her head." Brenda described how her partner's death fromAIDS forced her to confront both the fact that she was also infected with the virusand the fact of her own mortahty. She recalled how her terror in relation to this induceda psychotic episode with delusions that "she was dead." She described how these fearswere acted out on her children:

"I wasn't all together, I'm telling you. I wouldn't let the kids go out of the house. I wouldn't let them puton the lights. I don't know what I was experiencing."

After discharge from hospital, Brenda continued to struggle with her dread about dying:

"I was just home and my mind was just worrying about this HIV, what's gonna happen to my kids,what's gonna happen to me, who's gonna take care of them, that was my most fear, just being in thehouse and waiting for something to happen."

In contrast, those women who were former substance abusers minimized theirexperience of death anxiety, focusing rather on the positive effects of the diagnosisand the opportunity it offered them for a "second chance in life." Esther describedhow confronting her mortality while receiving the diagnosis provided her with anopportunity to forge a more meaningful life, which diminished her existential anxiety.She said that learning that she was HIV positive "was just like the cherry on top" for ithad helped her to "keep on the straight and narrow," and even go back to school,gaining a professional education and greatly improving her financial stability. She said:

"I think having the disease and getting in touch with my mortality just gave me a new zest for life, andput me in high gear."

Sarah spoke about how her spiraling drug abuse was precipitated by vain attempts tomedicate chronic feelings of "terrible loneliness," which had become heightened bythe rejecting response of other drug abusers because of her HlV-l- status. She reportedthat since giving up drugs, a process initiated by facing the fact of her diagnosis, the


"loneliness has been lifted" and now she had everything that she wanted including afiance and the return of her children to her care.

One explanation for the ability of many former drug abusers to respond with dimin-ished anxiety and a focus on the positives, may be that their abuse of substances hadserved to defend them against feelings of vulnerability in relation to death and loneliness.This defense is described in the existential psychological literature as the "rescuerdefense," which is an attempt to shield oneself from the dread of isolation or fromassuming responsibility for one's life (Ottens and Hanna, 1998). However, Ottens andHanna (1998) suggest that a boundary situation (which a diagnosis of HIV infectionmay represent) can loosen one's defenses, force one to face core existential issues andopen the way for one's potential to be actualized. This process seemed to have occurredamongst these women, encouraging them to embark on a journey ofgrowth and authen-ticity that ameliorated feelings of death anxiety and loneliness.

Children served as the second and crucial protective factor in helping the mothersto contain their own death anxiety, and to minimize their feehngs of existential iso-lation. Though HIV infection may be stigmatizing and therefore isolating, a child'spresence forced mothers to maintain contact with the outside world in order toadequately tend to the child's needs. Andrews, Williams and Neil (1993) note thelife-affirming nature of children, and that a child's energy and enthusiasm as wellas his/her needs for care and attention provide mothers with a "built-in source ofengagement with the world." When the outside world failed them, and feelings ofrejection became too painful, focusing on children could provide a source of whatYalom (1980, p. 355) terms "interpersonal affiliation," minimizing feehngs of exis-tential isolation, and giving meaning to the loneliness experience, thereby ameliorat-ing it. Ronnie describes this:

"In order not to be hurt I stay alone. I guess I got used to it. Because all my hfe I was alone... And I'mnot really alone. I got my two daughters, they keep me busy."

A child's need for care and attention that was frequently augmented by theirmedical needs, engendering heightened feelings of intimacy on the part of the motherin relation to her child, thereby diminishing loneliness. Angie described how she tookcomfort in the thought that she and her son Jay could deal with their shared illnessexperience together. She said:

"I say [to him] that he has a blood disorder, and not only do you have that Jay but so do Mummy. Thatmakes him feel better. It makes me feel better so he won't feel like he has to take something that I don'twant to take and why do I have something if Mummy, you don't. So that's what I do, me and my babyevery day we eat in the morning, we take our meds."

This is a process which is referred to in the psychoanalytic literature as a twinship experi-ence (Kohut, 1984).

The protective quality of the attachment of mothers to their children, at least whiletheir child remained healthy, was summed up by Esther. She noted that the only thingthat could make her "feel so bad emotionally," was her daughter becoming ill. She,like many other mothers, seemed to channel worries about her own demise into a healthyconcern for her child's future caretaking needs. Esther said:

"when I think of death, is when I'm thinking of ways to secure my daughter's future which is almostconstantly, so I think of death a lot."


Even when children were in the care of others, they provided the mother with a reason tostruggle on.

The third factor for some mothers included employing defenses such as denial andsuppression. These served as psychological coping mechanisms for managing existentialanxiety once they had processed feelings of shock. Janoff-Bulman (1992) noted thatdenial allows the sufferer to incorporate their experience into their internal world,regain equilibrium and confront the trauma in "smaller, manageable doses." Toni des-cribed effectively suppressing her anxieties, ingesting the realities of her situation onlyperiodically, for example when she attended hospital appointments. When she was pre-sented with a clean bill of health at clinic appointments, she was able to erect defensesonce again, and revert to thoughts about her life that "made her happy." She said:

"I really don't like talking about it. It continues the brain thinking are you gonna be here today, are yougonna be gone tomorrow. I really don't want to think about anything bad that's gonna happen. 1 wannathink about all good stuff"

Choice, Responsibility and Guilt

In relation to choice, responsibility and guilt, existential philosophy propounds the ideathat although one's situation at any one time limits one's options, one still has thefreedom and therefore the responsibility to make certain choices. Taking action bymaking a choice is more important than the consequences of any one choice, for itenables one to feel more control over one's life and enjoy improved psychologicalhealth (King et al., 1978). While HIV infection narrowed the range of choices in thelives of women in this sample, the interview data highlighted the many new and complexchoices they faced. One choice concerned deciding which medical regime was the mostsuitable for themselves or their child, or even doubts about following any regime. Thisdilemma arose because of the uncertainties concerning both the long-term effects andside effects of some medications. Violet illustrated the anxiety that such a choicegenerated for her, a response that is highlighted in the existential literature whenindecision is involved (Corey, 1982):

" . . . its like, for her [daughter], she can't do it herself [give medication] so I've got to get it together for herto take it, and sometimes I just don't want to do it no more. . . It's a constant weight, it's like a part ofsomething that you just get tired of doing it, reminds you that something bad could happen if you don'ttake it. But if I go to bed 1 have such a bad guilt trip that I have to go out and take my meds. I'll lie thereand I can't even breathe."

The choice concerning disclosure of their diagnosis, both within the family and inrelation to the world outside had many ramifications for all mothers (cf. Siegel andScrimshaw, 2000). Several women pointed out that they felt AIDS was different fromother diseases such as cancer because people were more fearful of contagion in relationto AIDS and therefore were more rejecting. In light of this, conflicts around disclosurewere frequently determined by the shame and stigma associated with the infection andthe impact, as a consequence, that sharing the information with family members orwith others outside the home would have on both the mother and child. The great effortsthat mother went to, to prevent the spread of HIV, while being ever attentive to therepercussions of disclosure are described by Ingram and Hutchinson (1999) in theirstudy of 18 HIV-infected mothers. It has been noted that some of the dilemmas inrelation to disclosure to a child that generate stress include, for example: whether the


child would disapprove of, or feel stigmatized or contaminated by the mother'sprevious lifestyle (e.g. substance abuse), and even reject her; whether the childmight deidealize the parent in response to this information, or even revive a parent'schildhood experiences of feeling unloved and unwanted; whether the child would becircumspect, or divulge this information outside the family and whether there mightbe psychological repercussions for the child, for example depression, hopelessness,anxiety (Armistead and Forehand, 1995; Forehand et al., 1998). Semple et al.(1993) found in their study of 31 HIV-infected mothers, that disclosure to a childmay be the most stressful type of disclosure for this group of women.

Guilt was also expressed by many women for having and transmitting the virus, andfor the suffering uninfected children endured as they had to deal with the effects ontheir lives of HIV infection in siblings and parents. One important psychological pro-cess which seemed to influence how much guilt a woman experienced in processingher diagnosis was what Janoff-Bulman (1992) describes as their perception of itsorigin as either "characterological" or "behavioral." She notes that if one sees one'spast behavior as "misguided" and blames one's behavior, rather than one's character,on the cause of one's present predicament, then one believes future events can becontrolled, feelings of helplessness can be transformed to control, and guilt overcome.Francis' description of herself which might suggest that she viewed herself as "charac-terologically flawed" for contracting the virus and transmitting it to her daughter, kepther trapped in her feelings of helplessness and guilt. She identifies God as a punishingfigure and says:

"Once 1 found out 1 had it, 1 said 1 must be a bad person... God is punishing me because 1 must've donesomething nasty to someone and now this is my just desert."

In order to assuage her guilt and minimize her pain, Francis employed the defense ofdistancing herself, assigning her mother the task of administering medication to herdaughter.

Angie's previous behavior, in contrast, might suggest that she viewed herself as"behaviorally" flawed, a view which enabled her to overcome her guilt and to takepride in the fact that she no longer abused drugs. She viewed her current behavior as"good" and took comfort in the thought that she had "God's protection" now thatshe had reformed herself. In a related vein, Violet described her husband's role inameliorating her self-blame by confronting her with the randomness of life, therebyreframing her "bad behavior" as an existential issue, a product of life's uncertaintiesand the hand of fate: "Why not you" he said "you've just as human as they are,why can't you catch it."

The anxiety generated by the issues of choice and responsibility caused mothers toemploy certain defenses in order to cope with these feelings, and minimize feelingsof guilt. Several mothers dealt with the responsibility they felt, for example in rela-tion to the possibility that their child could infect others through a blood spill atschool, by employing the defense of projection and making the outside worldresponsible for certain risky situations. They felt supported in this process bytheir health care team's verbal support of the health department's directive thatall public institutions should follow universal precautions. In this manner, thehealth care system served as the "good mother" ameliorating a mother's self-criticalattitude, thereby enabling relief of guilt and an ability to make a clear choice. Estherdescribed this process as follows:


"When it was time for her [daughter] to go to school I didn't know how to act. Again it was somethingnew. I didn't know how to deal with a child of school age who was HIV, and I said to Dr. W. what shouldI do, should I tell certain people or not. I decided not to tell anybody, because everyone should followinternational precautions."

In order to assuage her guilt, Maria in contrast employed the defense of projection inblaming the health care system for what she viewed as their negligence in her givingbirth to a child with HIV infection. She was angry that she had not received any infor-mation on HIV infection while pregnant with this child, and felt this had prevented herfrom making an informed choice about whether or not to have an abortion. However,regardless of the mode in which they contracted the virus, feelings of guilt experiencedby all mothers in relation to transmitting the virus ebbed and flowed. Several mothersnoted that when they overheard their infected children speak of growing up, feelings ofsadness and regret overtook them, as they were reminded that their children may neverreach their adulthood.

Vulnerability, Helplessness and Gaining Control

Janoff-Bulman (1992) notes that feelings of helplessness arise when trauma shattersthe illusion of invulnerability that one takes for granted most of the time. However,paradoxically, a central claim of existentialists is that no matter how great arethe forces that victimize human beings they have the capacity to influence insome way how they will relate to their fate. These feelings were described by Violetas follows:

"Before I found out I was sick, I wasn't worried I'd get hit by a car, to go out and get shot, but todaypeople could get shot in front of your own house, people could go out and get into a car accident and getkilled. I never had them thoughts before."

As Violet struggled to regain control over feelings of despair that she will die soon, shevacillated between hope for a future and hopelessness, a response that was typical ofmany mothers:

"Sometimes 'cause like I say, I'm gonna work out and get this great body, then 1 say for what? 1 might aswell do what I want to do, eat what I want to eat . . . because who knows whether I'll be here nextyear.... So I go through all these mixed emotions, of wanting to do something and changing my mindbecause I'm not going to be able to finish."

In the process to regain control over their lives, these women employed variouspsychological coping strategies that have been described by several authors (Crossley,1998; Janoff-Bulman, 1992; Taylor, 1989). The first strategy included reinterpretingthe event as an important or necessary part of hfe thereby assigning it a meaning(Crossley, 1998; Janoff-Bulman, 1992; Taylor, 1989). This process is in hne with whatRiskind in Ottens and Hanna (1995) notes is a basic notion in existential therapy: thatpeople construct personal meanings and these meanings profoundly influence theirlives. Children were viewed as a source of meaning and joy, despite the fact that theymay have been conceived in a relationship with a partner who infected the mother.For example, Ronnie who was not a drug abuser herself, noted that if she had left herformer partner, a drug abuser who had infected her with the virus, things "might'veturned out worse" for out of that tragedy, she felt herself lucky to have emerged withtwo beautiful daughters. Esther, who had previously abused drugs, eloquently described


how infection with HIV had served as a crucial ingredient in achieving certain goals in herlife in addition to having a child. She echoed the sentiments ofmany former drug abusers,one of whom even described infection with the HIV virus as a "gift" (cf. Siegel andScrimshaw, 2000) and said:

"As strange as it may sound because HIV is a horrible disease, I can still say that it's almost like it becamea silver lining in my cloud.. .1 guess from where I was 10 years ago [time of diagnosis] till now, my life hasbecome everything I had wanted it to be years ago when 1 was younger."

She described going to school at 40, falling in love with the man of her dreams, andgetting "an even further blessing," her daughter. Later she added: "my conviction issuch that I know that a door will never close without there being another option forme," and reports feeling "very blessed."

The second psychological strategy employed by these mothers to gain control was todefine the way in which they coped as more admirable than that of others, a processwhich enhanced their self-esteem. Ronnie highlights this in the following quote:

"I just see my life like this, I say I have what 1 have, I'm still alive, I'm going to school, 1 see a lotof people doing nothing with their lives, or other people with other problems. It keeps me wanting todo more."

She felt she was dealing with her life and felt bolstered by the thought she was morevirtuous than former partners who had abandoned her for having the virus, an actionshe felt she would not take. Ronnie illuminates what Frankl describes as finding meaningin the dignity with which one carries one's suffering (King et al., 1978).

The third psychological coping strategy for gaining control was to reframe their situa-tion as one in which they received special protection despite the tragedy that had befallenthem. Taylor (1989) notes that it is the belief that one holds about the reality rather thanthe reality itself that promotes a feeling of mastery. For example, Angie spoke of the set-backs in processing her diagnosis but then reassured herself that she had different qua-lities from others who have died:

"even though we have the same illness maybe it was something they was not doing, or they was not get-ting that I may be getting... to be here I had to do some changes and I did those changes and I'm here."

The fourth psychological coping strategy employed by many women was to universa-lize their predicament, by placing it in the context of other possible illnesses, and life'sstruggles in general. Ronnie illustrated this process:

"a lot of things happening in the world and I say to myself who's got it worse, none of us. Things thathappen on the news, people getting abused, shooting each other... I feel a lot of people sick with diabetesand things like that, some passed away with that. I could've died of cancer, diabetes and I say I havesomething that is a different way of dying."

Her belief that life was difficult for everybody lent a degree of normalcy to her situationand minimized the possible overwhelming ramifications of the diagnosis.

It seems that the culture of poverty and trauma in which these women were raisedserved as an important additional factor in their ability to process their experience ina more positive way. In fact, several authors note that one's experience of events astraumatic in adulthood is determined both by the culture one identifies with, or origi-nates in, and one's management of previous traumas (Forest, 1991; Janoff-Bulman,1992). Not only did many mothers measure their struggles against those of others,but nearly all in our sample recounted previous traumas in their lives which they had


surmounted alongside a discussion of this one, as if in the context of their turbulentlives infection with the HIV virus was just another challenge they felt they couldovercome. For example, Maria qualified her previous turbulent life as somethingto be grateful for. She said she was "more prepared than a person who never hadanything wrong," since she had "faced death many times before." Maria's behef thatthe traumas of her past have not been in vain for they have served to strengthen her,supports Frankl's existential perspective on trauma and meaning (Weisskopf-Joelson,1978).

Teaching and sharing their experience with others was an additional methodaiding many women to cope better psychologically, for it enabled them to turn feel-ings of helplessness into control. Wolfenstein (1957) described a healing process thattakes place amongst victims of trauma, as they become "the effective storyteller,"forcing the audience to undergo their experience. For these mothers the act ofrecounting their story became similarly reparative, as well as empowering, as itprovided them with the opportunity to work through their experience in amanner that was consistent with their identities and capacities (Viney andBousfield, 1991). Their role as an authority figure on this participant provided anenormous boost to their self-esteem. In addition to informing others publicly,educating oneself about the illness engendered more of a sense of control andenhanced psychological health in some.

Finding reasons to be hopeful was the fifth psychological coping strategy employedby many women, which provided a sense of control over their situation. Some reasonspresented by mothers included: first, the fact that more treatments existed now thanwhen they were first diagnosed; second, the fact that they have survived until nowand that all, but one, were mobile and symptomatic, provided many with a sense ofsymbolic protection; and third, since over time more people in society at large hadbeen contracting AIDS. Maria noted that in light of this, it was incumbent uponthose in power to take the matter seriously and find a cure.

The final psychological strategy which enhanced coping was a heightened sense ofspirituality expressed by several former substance abusers (Siegel and Schrimshaw,2000). Sarah, for example, described how her religious behefs provided her withstrength and comfort, enabling her to "hold" the existential uncertainty that her situa-tion had so starkly confronted her with. She said:

"I guess my spirituality helped a lot because I really made amends with my m a k e r . . . I actually foundsome kind of relief and 1 guess he showed me the way ."

Authenticity and Meaning

According to the existentialists, tragedy can serve as a catalyst that engenders a moremeaningful and authentic existence as we become aware of our potential and act onit (Bugental, 1965). An authentic existence includes three main characteristics: beingfully aware of the present moment, choosing how to live one's life in the momentand taking responsibility for the choice (Corey, 1982). Thus, from an existentialperspective, a diagnosis of HIV infection can serve as a "turning point" in one's lifeand an impetus to forge a more meaningful and authentic existence (Lamendola andNewman, 1994; O'Leary and Ickovics, 1995; Pace and Stables, 1997). The realization


that time is short and therefore precious may shift the focus to the present, and tomaximizing the time in the present (Mayers and Svartberg, 2001).

Angie illuminated the way in which the infection with the virus served to shift herpriorities to the present, enabling her to focus on those aspects of her life today thatlent more meaning to her life. She said:

"[the virus] has made me a more responsible person. 1 cherish the things today that 1 didn't in the past . . .For me it's a purpose here, I got my baby, my family, it means a whole lot to me and that's what keepsme going."

And she adds:

"I just know that life is not to take for granted. I don't take it for granted any more. . . sometimes I wantinstant gratification, but you gotta have patience because whatever we go through in life is a process.Sometime ago I might not have understood that but today I do. 1 may not have what I want but Ihave what 1 need."

She reflects on how her drug use had been an attempt to artificially inflate her self-esteem. In contrast, now she notes that she is taking care of her son:

"to the best of my abihties. God forbid if I leave here tomorrow or tonight. I done what I can do. I'll bowout graceful. We go through the storms but if you go through and come out the other side you'll see somelight and I went through the tunnel (with drugs) and came out. A drug made you feel like a somebody notnobody. Always wanting to fit in, to be accepted by somebody else."

As she became clearer about what was important to her, she felt a "somebody," and nolonger needed drugs to enhance her feelings of self-worth. This insight indicated a grow-ing process of authenticity.

Angie highlighted the special meaning that caring for her son gave her, as if throughproviding responsible child care, she was making reparation for the neglect that shefelt she had dealt her other children during her drug-taking years. She describedthe jolt that infection with the HIV virus had given her, which resulted in relinquish-ing her drug abuse, offering her the opportunity to be a better mother to her son.She said:

" . . . a lot of things that I didn't give to my other two kids because of the drug addiction. So partof me missed it with my two oldest. With Jay, I was there from day one. I didn't go to churchbut I believed in a God, a higher power, that he gave me Jay for some reason. It would've destructedme but its me and Jay I struggle for. Jay is really special. He has the disease, we both have. I givehim everything. I missed that with the other kids And most of all I love him, I tell him I lovehim. I just focus on the day to day and whatever time we have together. I'm gonna make it as goodas possible."

In addition to children, reconnecting with extended family, which for many wasprecipitated by receiving the diagnosis and beginning a recovery process, gave newmeaning to the lives of some of these women and helped them cope. As Rolland(1990) notes, in the context of a threatened loss there is an opportunity to improve allfamily relationships and repair severed ties. Additionally, those women who were ableto rehnquish their drug abuse engendered more self-respect, which in some cases com-manded more respect from extended family and increased their involvement. Sarahdescribed how enriched her life had become with extended family, friends and a fiancein her new life, in contrast to earher when her focus was "just the next drug." As shereflected on her past she summed up the feelings expressed by almost all former sub-stance abusers:


" . . . it makes me realize that that wasn't the way, and my life today means a lot to me, this is life eventhough I have this virus, this is life."

CONCLUSION

The struggles of this group of HIV-infected women to deal with hfe and death issues intheir lives are poignantly highlighted when examined from an existential-philosophicalperspective. It has been noted that tragedy can be either "a powerful, growth-facilitat-ing influence" or "a point of retreat from hving" (Bugental, 1965, p. 163 ) and that ashuman beings we have the freedom to choose, no matter how limited our options mightbe. In relation to this, we found that the mothers in this study were able to improve ontheir psychological functioning in the face of death (i.e. improved mothering, drugabuse rehabilitation, improved mood) despite facing the additional burden of adisease which carries much stigma, and the handicaps of hving in a socioeconomicallyimpoverished situation. Those mothers who had been former substance abusersviewed their confrontation with death, which HIV infection represented, as the impetusto take responsibility for their substance abuse, thereby rehnquishing it. This opened thepossibihty for a "second chance" in Hfe - a "second chance" to be a responsible parent,which they had been incapable of during the period in which they had abused substances.The analysis also highhghted how many of the mothers chose to reframe their previousexperiences of suffering as necessary ingredients in facing this new challenge, therebygenerating positive feelings despite their difficult situations. This paradoxical processwhich is emphasized in existential philosophy, may have been heightened by the factthat these mothers were largely impoverished and from minority groups. These hypo-theses are in hne with Siegel and Schrimshaw (2000) who note that growth amongstdiverse populations may be contextual and that the relevance of the culture of originof the individual deserves attention.

The finding that children served as a crucial ingredient in the ability of these mothersto grow and find meaning in the face of tragedy, supports previous research by Davies(1997) and Ingram and Hutchinson (2000). This group of mothers experienced whatYalom (1996, p. 7) refers to as a "heightened existential awareness," that is an aware-ness that incorporates a "new appreciation for the preciousness of life," as a result offacing mortality. Children were what they cherished the most and devoting themselvesto their children and the time they have with them now gave meaning to their lives(Yalom, 1996). Children can be seen as key in what Davies (1997) describes as forcesthat in the face of a foreshortened hfe, serve to hberate one from the "shackles" ofeveryday existence which engage one in struggles that are focused on the future. Thisshift in focus to the present and to their children which emerged in our analysisoccurred for all mothers regardless of their previous risk factor. The meaning generatedby bringing the relationship with their children into "sharper focus" is highlighted inthe existential literature by a number of authors who note that dedicating one's lifeto someone or something gives one a purpose, thereby ameliorating suffering(Frankl, 1967; Nietzsche, 1914).

In addition, children may have provided mothers with a deeper connection, aphenomenon which Yalom (2002, p. 312) notes emerges in those relationships whereboth parties are facing the same situation. In this way children served to amelioratethe feelings of death anxiety and existential loneliness in their mothers, helping themto overcome the feelings of helplessness and aiding them in employing an active


rather than passive stance in managing their situation. In connection with tending totheir child's medical needs, those mothers who were ambulatory, seemed to have gen-erated new connections with their health care providers (cf. Siegel and Scrimshaw,2000) and other parents. This connection with a group of similarly infected individualsin society at large seemed to open new avenues for ameliorating feelings of isolationand loneliness, which were products both of infection with the HIV virus and thesocioeconomic environment they lived in. Thus, children served to aid their mothersin mitigating against what Rokach describes as the inability of HIV-infected patients,unlike cancer patients or others with less stigmatizing illnesses, to "re-enter society"satisfactorily (Rokach, 2000).

In relation to the physical benefits, we speculate that the presence of children, both asa meaning-giving source and with respect to their pressing needs (i.e. they forced themothers to be engaged with the outside world on their behalO, may have served as aprotective factor (Ingram and Hutchison, 1999). Several authors have noted thepossible psychological benefits of finding meaning for the HIV-infected population.These benefits have included lower levels of anxiety and depression in women (Linn,Anema, Estrada, Cain and Usoh, 1994); lower to moderate levels of existential loneli-ness in women (Mayers et al., 2002) and positive immunologic changes in men (Boweret al., 1998). The positive effects of active coping have been noted both in relation toclinical progression in the HIV-infected population (Mulder, Antoni, Duivenvoorden,Kauffman and Goodkin, 1995) and to emotional distress (Moneyham et al., 1998).

There is a risk that in the interviews the mothers may have exaggerated the role theirchildren played in helping them to manage a serious, possibly life-threatening disease.Admittedly, they are biased reporters in relation to their children's role due to theirdeep attachment and the role this attachment provided in "minimizing" their owndistress (Crossley, 1998). Additionally, the fact that seven out of nine women weresingle parents and eight were unemployed, may have contributed further to theirfocusing on their children as a meaning-giving source. However, in the data the mothersalso described other meaning-giving factors such as spirituality, defining the way inwhich they coped as more admirable than that of others, reconnecting with extendedfamily after a lengthy estrangement and teaching and sharing their experience withothers.

We have described how mothers' involvement with their children, including"twinship" experiences ameliorated their feehngs of isolation and loneliness.However, while a mother's intense involvement in her child's early life may servemany adaptive functions in relation to the child's dependency needs it may, undercircumstances such as the child's need to separate as she/he grows older, be perceivedas maladaptive, serving the mother's self-object needs (Kohut, 1984) for comfort andcare, rather than the child's. As new treatments emerge slowing the rate of progressionof HIV infection, and enabling children to live longer, this phenomenon may requiremore attention and possibly intervention. Future research might include more of afocus on the experiences of children who live in an HIV-infected family from thechild's perspective (see, e.g. Reyland, Higgins-D'AUessandro and McMahon, 2002).In relation to both infected and noninfected children, this will require developmentof suitable methods that account for greater sensitivity to the child's particular lifesituation.

The women interviewed for this study may represent a select group of mothers whowere able to comply with the medical regimes, maintain contact with the hospital clinic

110 A.M. MAYERS e/«/.

and sustain a minimum of stability in their lives that enabled this interviewer to tracethem five years after the previous contact with them. Those women who were facingdeath, or whose lives were so chaotic that they could not be located during the recruit-ment phase of this study, may have related a different story of coping to us, had webeen able to interview them. They should also be given a voice and contribute to broad-ening our understanding of how diverse women cope with HIV (Kaplan, Marks andMertens, 1997). However, reaching this group creates new challenges and it may benecessary to explore a variety of methodological strategies to gain better access topoor mothers with HIV. Additionally, longer term survival may signal protective emo-tional factors, therefore future research might include a longitudinal study exploring thepsychological and social characteristics of both those women who survived over thelong term and those who did not including the extent to which they had access to psy-chological and social support. This could also shed light on the psychological makeupand social network characteristics of long-term survivors of other serious illnesses. Withrespect to generalizability of our finding that children played a crucial role for mothersin managing their illness, future research might examine whether this is also applicableto fathers struggling with a serious illness.

A ekno wledgments

For comments on earlier drafts and editorial suggestions, the authors thank DaniellePopp and Martin Svartberg.

References

Anderson, R.M., Grassley, N. and Garnett, G. (2000). Success in HIV Controi. Fact or Fiction? Paperpresented at the Xltl tnternational AIDS Conference. Durban, S. Africa.

Andrews, S., Williams, A. and Neil, K. (1993). The mother-child relationship in the HIV-positive family.IMAGE: Journal of Nursing Scholarstiip, 25, 193-198.

Aranda-Naranjo, B. and Davis, R. (2000). Psychosocial and cultural considerations. In: Anderson, J. (Ed.),A Guide to tlie Clinical Care of Women with HIV, pp. 269-282. Department of Health and HumanServices, Washington, D.C.

Armistead, L. and Forehand, R. (1995). For whom the bell tolls: parenting decisions and challenges faced bymothers who are HIV seropositive. Clinical Psyctwlogy: Science and Practice, 2, 239-250.

Bateson, G., Jackson, D., Haley, J. and Weakland, J. (1956). Toward a theory of schizophrenia. BetiavioratScience, I, 251-264.

Bourdieu, Pierre (1986). The forms of capital. In: Richardson, J.G. (Ed.), Ttte Handbootc of Theory andResearch for the Sociology of Education, pp. 241-258. Greenwood, New York.

Bower, J., Kemeny, M., Taylor, S. and Fahey, J. (1998). Cognitive processing, discovery of meaning, CD4decline, and AIDS-related mortality among bereaved HIV-seropositive men. Journat of Consutting andCtinicat Psydxotogy, 66, 979-986.

Bronfenbrenner, U. (1979). Ttxe Ecology of Human Development, Harvard University Press, Cambridge, MA.Bugental, J. (1965). The Searctifor Authenticity. Holt, Rhinehart & Winston, New York.Butz, A.M., Hutton, N., Joyner, M., Vogelhut, J., Greenberg-Friedman, D., Schreibeis, D. and Anderson,

J.R. (1993). HIV-infected women and infants. Journal of Nurse-Midwifery, 38, 103-109.Catalan, J., Beever, A., Cassidy, L., Burgess, A., Meadows, J., Pergami, A., Gazzard, B. and Barton, S.

(1996). Women and HIV infection: investigation of its psychosocial consequences. Journal ofPsyctiosomatic Research, 41, 37-47.

Corey, G. (1982). The Theory and Practice of Counseling and Psychottierapy. Brooks-Cole, Monterey, CA.Coward, D. and Lewis, F. (1993). The lived experience of self-transcendence in gay men with AIDS. Oncotogy

Nursing Forum, 20, 1363-1368.Crossley, M.L. (1998). Women living with a long-term HIV positive diagnosis: problems, eonccrns and ways

of ascribing meaning. Women's Studies International Forum, 21, 521-533.


Davies, M.L. (1997). Shattered assumptions: time and the experience of long-term HIV positivity.Sociat Science and Medicine, 44, 561-571.

Dunbar, H.T., Mueller, C.W., Medina, C. and Wolf, T. (1998). Psychological and spiritual growth in womenliving with HIV. Sociat Wortc, 43, 144-154.

Ellerbrock, T., Bush, T., Chamberland, M. and Oxtoby, M. (1991). Epidemiology of women andAIDS in the United States, 1981 through 1990. Journat of the American Medicat Association, 265,2971-2975.

Feifel, H. (1960). Death-relevant variable in psychology. In: May, R. (Ed.), Existential Psychology, pp. 61-74.Random House, New York.

Feinberg, J. and Maenza, J. (2000). Primary medical care. In: Anderson, J. (Ed.), A Guide to ttie Ctinicat Careof Women with HIV, pp. 79-138. U.S. Department of Health and Human Services, Washington, D.C.

Forehand, R., Steele, R., Armistead, L., Simon, P., Morse, E. and Clark, L. (1998). The family health project:psychosocial adjustment of children whose mothers are HIV infected. Journat of Consutting and CtinicatPsychotogy, 66, 513-520.

Forest, K.B. (1991). The interplay of childhood stress and adult life events on women's symptoms ofdepression. Dissertation Al)stracts Internationat, 51(9-A), 3237.

Frankl, V. (1967). Psychotherapy and Existentialism. Washington Square Press Inc., New York.Fryback, P. and Reinert, B. (1999). Spirituality and people with potentially fatal diagnoses. Nursing Forum,

34, 13-22.Glaser, B.G. and Strauss, A.L. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research.

Aldine de Gruyter, New York.Gluck, S. Berger and Patai, D. (Eds.) (1991). Women's Words: The Feminist Practice of Oral History.

Routledge, New York.Green, G., Platt, S., Eley, S. and Green, S. (1996). "Now and again it really hits me": the impact of an HIV-

positive diagnosis upon psychosocial well-being. Journat of Heatth Psychology, 1, 125-141.Greening, T. (1971). Existential Humanistic Psychology. Brooks, Cole, Monterey, CA.Grove, K.A., Kelly, D.P. and Liu, J. (1997). "But nice girls don't get it": women, symbolic capital, and the

social construction of AIDS. Journal of Contemporary Ethnography, 26, 317-337.Hackl, K.L., Somlai, A.M., Kelly, J.A. and Kalichman, S.C. (1997). Women living with HIV/AIDS: the dual

challenge of being a patient and caregiver. Heatth & Social Wortc, 22, 53-62.Ingram, D. and Hutchinson, S.A. (1998). HIV-positive mothers and stigma. Heatth Care for Women

Internationat, 20, 93-103.Ingram, D. and Hutchinson, S.A. (1999). Defensive mothering in HIV-positive mothers. Quatitative Heatth

Research, 9, 243-258.Ingram, D. and Hutchinson, S.A. (2000). Double binds and the reproductive and mothering experiences of

HIV-positive women. Quatitative Heatth Research, 10, 117-132.Janoff-Bulman, R. (1992). Shattered Assumptions: Towards a New Psychotogy of Trauma. Free Press,

New York.Jaspers, K. (1970). Philosophy, Vol. 2. University of Chicago Press, Chicago.Kaplan, M., Marks, G. and Mertens, S. (1997). Distress and coping among women with HIV infection:

preliminary fmdings from a multiethnic sample. Americat Journat of Orthopsychiatry, 67, 80-91.King, M., Valle, R.S. and Citrenbaum, C. (1978). Existential-phenomenological implications for

psychotherapy. In: Valle, R.S. and King, M. (Eds.), Existential-Phenomenologicat Atternatives forPsychotogy, pp. 265-338. Oxford University Press, New York.

Kohut, H. (1984). How Does Anatysis Curei The University of Chicago Press, London.Kurth, A. (1993). Reproductive issues, pregnancy, and childbearing in HIV-infected women. In: Cohen, F.L.

and Durham, J.D. (Eds.), Women, Children and HIVIAIDS, pp. 104-111. Springer, New York.Kvale, S. (1989). To validate is to question. In: Kvale, S. (Ed.), Issues of Validity in Qualitative Research,

pp. 73-92. Studentlitteratur, Lund, Sweden.Kvale, S. (1996). Interviews: An Introduction to Quatitative Research Interviewing. Sage, Thousand Oaks, CA.Lamendola, F. and Newman, M. (1994). The paradox of HIV/AIDS as expanding consciousness.

Advanced Nursing Science, 16, 13-21.Lawless, S., Kippax, S. and Crawford, J. (1996). Dirty, diseased and underserving: the positioning of HIV

positive women. Sociat Science Medicine, 43, 1371-1377.Leiberich, P., Engeter, M., Olbrieh, E., Rubbert, A., Schumacher, K., Brieger, M., Kalden, J. and Joraschky,

P. (1997). Longitudinal development of distress, coping and quality of life in HIV-positive persons.Psychotherapy and Psychosomatics, 66, 237-247.

Linn, G., Anema, M., Estrada, J., Cain, V. and Usoh, D. (1994). HIV illness and mental distress in femaleclients of AIDS care and referral centers. AIDS Patiem Care, 8, 254-259.

Mareenko, M.O. and Samost, L. (1999). Living with HIV/AIDS: the voices of HIV-positive mothers. SociatWortc, 44, 36-45.

May, R. (1958a). The origins and significance of the existential movement in psychology. In: May, R.,Angel, E. and Ellenberger, H. (Eds.), Existence: A New Dimension in Psychiatry and Psyctiotogy,pp. 3-36. Basic Books, New York.

112 A.M. MAYERS ef a/.

May, R. (1958b). Contribution of existential psychotherapy. In: May, R., Angel, E. and Ellenberger, H.(Eds.), Existence: A New Dimension in Psychiatry and Psychology, pp. 37-74. Basic Books, New York.

May, R. and Yalom, I. (1995). Existential psychotherapy. In: Corsini, R.J. and Wedding, D. (Eds.),Current Psychotherapies, pp. 354-391. F.E. Peacock, Itasca, II.

Mayers, A.M. and Svartberg, M. (2001). Existential loneliness: a review of the concept, its psychosocialprecipitants and psychotherapeutic implications for HIV-infected women. British Journal of MedicalPsychotogy, 74, 539-553.

Mayers, A., FChoo, S.T. and Svartberg, M. (2002). The existential loneliness questionnaire: background,development and preliminary findings. Journat of Ctinicat Psychotogy, 58, 1183-1193.

McCracken, G. (1988). The Long Interview. Sage, Newbury Park, CA.Moneyham, L., Hennessy, M., Sowell, R., Demi, A., Seals, B. and Mizuno, Y. (1998). The effectiveness

of coping strategies used by HIV-seropositive women. Research in Nursing & Heatth, 21, 351—362.Moustakis, C.E. (1961). Lonetiness. Prentice Hall, Englewood Cliffs, N.J.Mulder, C.L., Antoni, M.H., Duivenvoorden, H.J., Kauffman, R. and Goodkin, K. (1995). Active

confrontational coping predicts decreased clinical progression over a one-year period in HIV-infectedhomosexual men. Journat of Psychosomatic Research, 39, 957-965.

Naples, N.A. (2003). Feminism and Method: Ethnography, Discourse Analysis, and Activist Research,Routledge, New York.

Nietzsche, F. (1914). Beyond Good and Evil. Davis Press, Edinburgh.Oakley, A. (1993). Interviewing women: a contradiction in terms. In: Roberts, H. (Ed.), Doing Feminist

Research, pp. 30-61. Routledge, London.O'Leary, V. and Ickovics, J. (1995). Resilience and thriving in response to challenge: an opportunity

for a paradigm in women's health. Women's Heatth: Research on Gender, Behaviour and Poticy, 1,121-142.

Osmond, M.W., Wambaeh, K.G., Harrison, D.F., Byers, J., Levine, P., Imershein, A. and Quadagno, D.M.(1993). The multiple jeopardy of race, class, and gender of AIDS risk among women. Gender & Society,7, 99-120.

Ottens, A. and Hanna, F. (1998). Cognitive and existential therapies: toward an integration. Psychotherapy,35, 312-324.

Pace, J. and Stables, J. (1997). Correlates of spiritual well-being in terminally ill persons with AIDS andterminally ill persons with cancer. Journal of ttxe Association of Nurses in AIDS Care, 8, 31—42.

Patton, M.Q. (1990). Qualitative Evaluation and Research Methods. Sage, Newbury Park, CA.Pezotti, P., Napoli, P., Acciai, S., Boros, S., Urciuoli, R., Lazzeri, V. and Rezza, G. for the Tuscany AIDS

Study Group (1999). Increasing survival time after AIDS in Italy: the role of new combinationantiretroviral therapies. AIDS, 13, 249-255.

Reyland, S.A., Higgins-D'Allessandro, A. and McMahon, T.J. (2002). Tell them you love them because younever know when things eould change: voices of adolescents living with HIV-positive mothers. Aids Care,14, 285-294.

Rokach, A. (2000). Terminal illness and coping with loneliness. The Journal of Psychotogy, 134,283-296.

Rolland, J. (1990). Anticipatory loss: a family systems developmental framework. Family Process, 29,229-243.

Rose, M. and Clarke-Alexander, B. (1996). Quality of life and coping styles of HIV-positive women withchildren. Journal of American Nursing in AIDS Care, 2, 28-33.

Schwartzberg, S. (1993). Struggling for meaning: how HIV-positive gay men make sense of AIDS.Professionat Psychotogy: Research and Practice, 24, 483-490.

Semple, S., Patterson, T., Temeshok, L., McCutchan, J.A., Straits-Troster, K., Chandler, J. and Grant, 1.(1993). Identification of psychobiological stressors among HIV-positive women. Women & Heatth, 20,15-36.

Siegel, K. and Scrimshaw, E. (2000). Perceiving benefits in adversity: stress-related growth in women livingwith HIV/AIDS. Social Science & Medicine, 51, 1543-1554.

Simoni, J.M. and Cooperman, N.A. (2000). Stressors and strengths among women living with HIV/AIDS inNew York City. AIDS Care, 12, 291-297.

Strauss, A. and Corbin, J. (1990). Basics of Qualitative Research: Grounded Theory, Procedures andTechniques. Sage, Newbury Park, CA.

Taylor, S. (1989). Positive Ittusions: Creative Setf-deception and the Healthy Mind. Basic Books Inc.,New York.

Vanden Bergh, R.L. (1963). Loneliness - its symptoms, dynamics, and therapy. Psychiatry, 37, 466-475.Van Servellen, G., Padilla, G., Brecht, M.-L. and Knoll, L. (1993). The relationship of stressful life events,

health status and stress-resistance resources in person with AIDS. Journat of American Nurses inAIDS Care, 4, 11-21.

Viney, L.L. and Bousfield, L. (1991). Narrative analysis: a method of psychosocial research for AIDS-affectedpeople. Sociat Science and Medicine, 32, 757—765.

Von Witzleben, H.D. (1958). On loneliness. Psychiatry, 21, 37^3 .


Wade, N., Birkhead, G., Warren, B., Charbonneau, B.A., Tyler French, P., Wang, L., Baum, J.B.,Tesoriero, J. and Savicki, R. (1998). Abbreviated regimens of zidovudine prophylaxis and perinataltransmission of the human immunodeficieney virus. The New England Journal of Medicine, 33,1409-1414.

Weisskopf-Joelson, E. (1978). Six representative approaches to existential therapy: Viktor Frankl. In: Valle,R.S. and King, M. (Eds.), Existential-Phenomenological Alternatives for Psychology, pp. 274-284. OxfordUniversity Press, N.Y.

Wolfenstein, M. (1957). Disaster: A Psychological Essay. Free Press, Glencoe, Illinois.Yalom, 1. (1980). Existential Psychotherapy. Basic Books, New York.Yalom, I. (1996). Lying on the Couch. Basic Books, New York.Yalom, I. (2002). Religion and psychiatry. American Journal of Psychotherapy, 56, 301-321.Yin, R. (1989). Case Study Research: Design and Methods. Sage, Newbury Park, CA.Zack, M. (1985). Loneliness: a concept relevant to the care of dying persons. Nursing Clinics of North America,

20, 403^14.

EXISTENTIAL ISSUES AND COPING: A QUALITATIVE STUDY OF LOW-INCOME WOMEN WITH HIV

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