Coping strategies and emotional wellbeing among

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Coping strategies and emotional wellbeing among HIV-infected men and women experiencing AIDS-related bereavement. K. J. SIKKEMA, S. C. KALICHMAN, ...
AIDS CARE (2000), VOL. 12, NO. 5, pp. 613– 624

Coping strategies and emotional wellbeing among HIV-infected men and women experiencing AIDS-related bereavement K. J. SIKKEMA, S. C. KALICHMAN, R. HOFFMANN, J. J. KOOB, J. A. KELLY & T. G. HECKMAN Center for AIDS Intervention Research (CAIR), Department of Psychiatry and Behavioral Medicine, Medical College of Wisconsin, USA

Abstract AIDS influences the psychological coping not only of the person with the disease but also those close to that individual. Following a death from AIDS, family members and friends may experience atypical bereavement. Bereavement coping challenges can be especially difficult and pronounced for persons who are themselves HIV-positive. The prevalence of AIDS-related bereavement and psychosocial predictors of grief severity were examined in an ethnically diverse sample of 199 HIV-infected men and women. Eighty per cent of HIV-positive respondents had experienced the loss of someone close to AIDS, the majority of whom had sustained multiple and repetitive losses. Two-thirds of the participants who had experienced an AIDS-related loss reported grief symptoms in the past month. Hierarchical regression analyses revealed that grief was most closely associated with emotional suppression and avoiding coping strategies, with residual variance related to depression. Interventions for AIDS-related bereavement that reduce distress and maladaptive ways of coping are needed in order to meet the secondary prevention needs of bereaved people living with HIV/AIDS.

Introduction Advances in the medical management of HIV disease hold the promise of extending the lives of persons with HIV/AIDS (Deeks et al., 1997; Volberding et al., 1994). Enhancing quality of life and alleviating adverse psychological sequelae among persons with HIV disease is of increasing importance as people learn earlier of their HIV-infected status and as improved medical treatment extends their life expectancy. One of the difficulties often faced by persons with HIV involves coping with the loss of others to AIDS. AIDS-related bereavement among those who themselves are HIV-infected may adversely affect quality of life and psychological coping with their own HIV infection. AIDS-related bereavement and multiple losses that occur in brief periods of time are common among people living in AIDS epicentres (Kessler et al., 1988; Martin, 1988; Neugebauer et al., 1992; Perry et al., 1992). The prevalence and adverse mental health consequences of AIDS-related bereavement are well established among gay men who Address for correspondence: Kathleen J. Sikkema, PhD, Division of Prevention and Community Research, The Consultation Center, Department of Psychiatry, Yale University School of Medicine, 389 Whitney Avenue, New Haven, CT 06511, USA. Tel: 1 1 (203) 789 7645; Fax: 1 1 (203) 562 6355; E-mail: [email protected]

ISSN 0954-0121 print/ISSN 1360-0451 online/00/050613-12 Ó

Taylor & Francis Ltd

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experience repeated losses of friends and lovers, and those who are themselves HIV-positive consistently report the highest level of distress (Martin & Dean, 1993). People living with HIV may, therefore, observe in others what they fear may happen to themselves as their own disease progresses. A relationship between the number of AIDS-related losses experienced and the degree of personal psychological trauma has been identified in several studies of AIDS-related bereavement. Martin (1988) observed that demoralization, sleep disruption, affective disturbance, intrusive thoughts, and both illicit and prescription drug use increased proportionally with the number of AIDS-related deaths experienced. Martin and Dean (1993) found persistent psychological distress among both HIV-positive and HIV-negative bereaved gay and bisexual men. Those who experienced an AIDS-related loss at any point in the seven-year study consistently showed traumatic stress symptoms, and the frequency of traumatic stress symptoms increased in relation to the number of losses suffered. Similar results were reported by Neugebauer et al. (1992), who found that number of bereavement symptoms, such as preoccupation and searching for the deceased person, was higher among gay men who had lost more close friends to AIDS. While AIDS-related bereavement affects the psychological wellbeing of persons living with HIV, it may also influence their health. Kemeny and colleagues (Kemeny & Dean, 1995; Kemeny et al., 1995) have found AIDSrelated bereavement to be associated with more rapid loss of CD-4 cells and other immune system changes in bereaved HIV-positive gay men. Postbereavement depressed mood has been examined among gay men who were caregivers to partners who later died of AIDS (Folkman et al., 1996). Postbereavement depressed mood among caregivers was associated with several factors including the caregiver’s own HIV-positive serostatus, longer relationship with the deceased, prebereavement ‘hassles’ and prebereavement use of distancing and self-blame to cope with caregiving stress. No association was found between multiple losses and the course of depressive mood following the death of a partner. Recent research suggests that the psycho social impact of repetitive AIDS bereavement has lessened in the gay communities of large cities, perhaps because AIDS deaths have now become so common in these communities (Cherney & Verhey, 1996; Martin & Dean, 1993; Neugebauer et al., 1992). However, the HIV serostatus of bereaved persons remains an important determinant of psychological distress in response to AIDS-related losses. Emotional distress, substance abuse and increased utilization of mental health services are common among bereaved HIV-positive persons (Martin, 1988). Martin and Dean (1993) found that men who are HIV-positive and bereaved by the loss of someone to AIDS consistently reported the highest level of psychological distress and exhibited fewer effective coping strategies for dealing with their own illness than HIV-negative men. While descriptive studies have documented the prevalence, severity and psychological impact of AIDS-related bereavement in community samples of primarily gay men, less research has examined the impact of AIDS-related bereavement on persons living with HIV infection. In addition, most research to date has examined bereavement patterns among predominantly White and middle class gay men in original AIDS epicentres. Very few studies have examined AIDS-related bereavement and its psychological impact in samples that include large numbers of minorities and HIV-infected heterosexual men and women. The present study had three objectives. These were to: (1) identify the prevalence and severity of bereavement experiences in an ethnically and gender diverse sample of HIV-positive men and women; (2) assess the psychological impact of bereavement on the emotional wellbeing of HIV-positive persons; and (3) identify coping strategies and psycho social factors related to severity of grief. Development of the study’s assessment measure was guided by

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theoretical models of stress and coping (Folkman et al., 1991; Lazarus & Folkman, 1984) and social cognitive theory (Bandura, 1986), as well as findings from past studies on AIDSrelated bereavement (Folkman et al., 1996; Martin & Dean, 1993; Neugebauer et al., 1992). Previous research has shown that psychological distress—including depression and traumatic stress, substance abuse and maladaptive coping—are frequent consequences of AIDS-related bereavement. In addition to determining the prevalence and severity of AIDS-related bereavement in this sample of HIV-positive individuals, we hypothesized that severity of grief reaction would be related to maladaptive coping strategies, greater emotional distress and depressive symptoms, and lower perceptions of social support resources. Methods Participants A sample of 199 HIV-infected persons was recruited in 1995 in Milwaukee, Wisconsin, to participate in the study. Participants were clients of Milwaukee’s major AIDS service organizations or persons receiving outpatient health care from HIV medical clinics. Milwaukee is a city with moderate AIDS prevalence; over 4,000 AIDS cases and nearly 6,500 cases of HIV infection have been diagnosed in Wisconsin, primarily in the Milwaukee area (Wisconsin AIDS/HIV Update, 1999). On average, participants were 36.7 years of age (SD 5 7.0, range 5 19– 61) and had completed 12.3 years of education (SD 5 2.1). Eighty-four per cent of participants (n 5 167) were males and 16% (n 5 32) were females. Fifty-nine per cent of participants were AfricanAmerican, 32% were White, 4% were Hispanic and 5% were of other ethnicities. Sixty-five per cent described their sexual orientation as gay or bisexual and 35% identified themselves as heterosexual. Thirty-seven per cent of participants were HIV-infected but not currently experiencing disease symptoms, 27% had illness symptoms that did not alter their daily routine and 36% had HIV-related illnesses that interfered with daily functioning. The average CD4 cell count among participants was 305 (SD 5 244, range 5 0– 864); 40% had CD4 cell counts below 200. Procedures Brochures announcing the opportunity to participate in a mental health needs assessment for people living with HIV infection were distributed at Milwaukee’s AIDS service organizations and in infectious disease clinics. The study topic was not specifically identified as AIDSrelated bereavement because we did not wish to bias recruitment in such a way as to oversample those who were bereaved, which might lead to an overestimation of the prevalence of AIDS-related bereavement. Interested men and women were informed that the study included mental health topics related to bereavement only when they appeared for assessments. HIV-positive serostatus was the only study inclusion criteria. All interested persons were scheduled and enrolled. The questionnaires were individually administered with a research staff member present. Participants received $25 for survey completion. Measures Loss and bereavement experiences. Respondents were asked how many people with HIV infection or AIDS they have known, how many persons they knew who died as a result of AIDS, and their relationships to these individuals. For those who had lost a loved one(s) to

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AIDS, bereavement was assessed due to losses in close relationships (such as close friends, family members and lovers) and more distant relationships (such as casual friends or acquaintances). For close relationships, respondents were asked how long it had been since the loved one died, whether or not the respondent served as a caregiver and whether the respondent had lived with the loved one.

Health status. Participants completed a checklist to assess their overall HIV illness symptoms and current health. The checklist assessed HIV illness levels ranging from no HIV illness symptoms to severe HIV illness that required bedrest during more than half of one’s waking hours. A second checklist of 16 items was used to assess the specific types of HIV illness symptoms that the respondent had experienced in the past year or, for those recently diagnosed, since the time of their HIV diagnosis (e.g. shortness of breath, dry cough, sore throat, fatigue). Participants also reported their most recent CD4 cell count.

Grief reaction. The Grief Reaction Index (Lennon et al., 1990) is a 12-item measure designed to assess common grief symptoms including numbness, denial and preoccupation with the deceased (sample items: ‘preoccupied with thoughts about him/her’, ‘felt his/her death had not really happened’, ‘unresolved feelings about his/her death’). It was administered to those who had lost a loved one(s) to assess grief experienced in the past month. Response options ranged from 0 5 ‘never’ to 4 5 ‘very often’. A grief reaction score was created by summing the item responses, with higher scores indicating greater severity of grief reaction. The scale demonstrated excellent internal consistency (Chronbach’s alpha 5 0.92, present study).

Coping strategies. Coping with HIV infection was assessed by a modified, 21-item version (Halman et al., 1994) of the Ways of Coping Questionnaire (Folkman & Lazarus, 1988). The scale, which describes a range of thoughts and acts that people may use to deal with the internal or external stressors, was administered to assess ways of coping with the loss of a loved one to AIDS among those who had experienced such a loss. Participants used four-point Likert scales (0 5 ‘not at all’ to 3 5 ‘most of the time’) to rate the extent to which they used each way of coping in response to their AIDS-related loss. As recommended by Folkman and Lazarus (1984), we conducted a data reduction principal components factor analysis to form composites of coping strategies specific to our sample of people living with HIV/AIDS. Using varimax rotations and 0.50 as the criterion for factor loadings to identify factor composition, six factors with eigenvalues greater than one were extracted. The first factor accounted for 23.3% of the variance and included six items that formed a factor labelled planful problem solving. Sample items included: ‘Double my efforts to make things work’, ‘Make a plan of action and follow it’ and ‘Just concentrate on what I have to do next’. The second factor was labelled avoiding coping and included six items that accounted for 15.7% of the variance (sample items: ‘Try to forget about the whole thing’, ‘Drink alcohol’ and ‘Wish the situation would go away’). Factor three was emotional suppression, which included two items accounting for 8.1% of the variance (sample items: ‘Try to keep my feelings from interfering’ and ‘Try to keep others from knowing how bad things are’). The fourth factor was labelled seeking social support and consisted of four items that accounted for 6.4% of the variance (sample items: ‘Talk to someone to find out more about the situation’ and ‘Talk to a friend about my feelings’). Factor five was characterized

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as minimizing and consisted of two items accounting for 6.2% of the variance, ‘Make light of the situation’ and ‘Go on as if nothing had happened’. A sixth factor included only one item and was omitted from further analyses. Thus, the principal components factor analysis revealed five composites: planful problem solving, avoiding coping, emotional suppression, seeking social support and minimizing.

Perceived social support. The Instrumental Support Evaluation List (ISEL; Cohen et al.,1985) is a 40-item scale administered to assess the perceived availability of potential social resources. The ISEL assesses four specific support resources: (1) tangible support, the perceived availability of material aid; (2) appraisal support, the perceived availability of someone with whom one can discuss issues of personal importance; (3) self-esteem support, the presence of others with whom the individual feels he/she compares favourably; and (4) belonging support, the perception that there is a group with which one can identify and socialize. Participants used four-point Likert scales (1 5 definitely true to 4 5 definitely false) to rate the extent to which each statement applies to them. The total ISEL score ranges from 0 to 120, with sub-scales (ten items each) ranging from 0 to 30. Higher scores indicate greater levels of perceived social support. The ISEL demonstrated good internal consistency (Chronbach’s alpha 5 0.74, present study).

Depression. The Beck Depression Inventory (BDI; Beck & Steer, 1993), a 21-item scale developed to measure clinical depression, was also administered to assess depressive symptoms. Items reflect cognitive, affective and somatic symptoms of depression. Responses to each item are made along four levels of severity, scored 0 to 3, yielding a total scale range of 0 to 63. Twelve items comprise the cognitive/affective sub-scale (score range 5 0 to 36), while the somatic sub-scales consists of nine items (score range 5 0 to 27).

Psychiatric distress. The SCL-90-R (Derogatis, 1983) assessed both global psychiatric distress and specific types of distress symptoms. The full SCL-90-R was administered and scored for Global Severity Index (a single summary indicator of the current level of overall distress), as well as the depression, somatization, anxiety, interpersonal sensitivity, hostility and phobic anxiety sub-scales. Each SCL-90-R scale yields a score between 0.0 and 4.0, with higher scores indicative of greater symptom distress.

Traumatic stress. The 15-item Impact of Events Scale (IES; Horowitz et al., 1979) was administered to assess stress associated with a traumatic event, in this case the loss of a loved one to AIDS. The IES measures two categories of experience in response to the stressful event: intrusive experiences, such as ideas, feelings or bad dreams; and avoidance, the recognized avoidance of certain ideas, feelings and situations. Items are rated according to how frequently the intrusive or avoidance reaction occurred, from 1 to 4, with higher scores reflecting more stressful impact. Scores for the intrusive sub-scale (sample item: ‘Any reminder brought back feelings about it’) can range from 7 to 28. Scores for the avoidance sub-scale (sample item: ‘I was aware that I still had a lot of feelings about it, but I didn’t deal with them’) can range from 8 to 32. Both sub-scales demonstrated good internal consistency (intrusive experiences, Chronbach’s alpha 5 0.90; avoidance, 0.89, present sample).

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Data analyses In order to address the study’s research questions, three sets of analyses were undertaken: (1) to assess the prevalence of AIDS-related bereavement among HIV-infected men and women in the sample, we first descriptively analyzed the number of respondents who had sustained bereavements due to AIDS and the nature of respondents’ relationships to those deceased; (2) to further establish the magnitude of psychological difficulties related to AIDS bereavement, the levels of current psychological distress and symptomatology experienced by AIDS-bereaved participants were examined relative to norms for other clinical samples; and finally (3) to examine the associations of coping strategies and psycho social factors with grief reactions, we performed a hierarchical regression analysis, entering grief reaction scores as the criterion variable predicted by four sequential blocks of variables: coping scales; social support; Beck Depression Inventory, and Global Severity Index scores on the SCL-90-R. Gender and physical symptoms of HIV were controlled in all analyses. We were primarily interested in examining the direct association between coping strategies and grief severity, while controlling for confounds. However, we also examined the residual association between social support and emotional distress, testing their association with grief severity after accounting for confounding factors (gender, physical symptoms) and coping strategies. After identifying a difference in the experience of AIDS-related bereavement with regard to race, we explored possible racial/ethnicity differences in coping with grief by reconducting the hierarchical regression separately for White and racial minority participants. Results Prevalence and severity of AIDS-related bereavement HIV bereavement experiences among sample members were both prevalent and severe. Of the 199 study participants, 80% (n 5 160) had experienced loss of a spouse or partner to AIDS (33% of bereaved respondents), of a family member (15% of bereaved respondents) or of a friend (91% of bereaved respondents). Eighty per cent of those participants who described any bereavement experiences reported that they had experienced multiple and repetitive bereavements due to the loss of partners, family members or friends to AIDS (M 5 12.65 bereavements, SD 5 20.43; range 5 2– 150). Sixty-eight per cent (n 5 108) of participants who had experienced an AIDS-related loss of a partner/spouse, family member or close friend reported experiencing grief reaction symptoms in the past month. Thus, study data indicate that a majority of persons with HIV infection who are facing the prospect of their own early death to AIDS are also coping with the loss of others close to them with the same disease. Analyses were conducted to characterize the levels of AIDS-related bereavement and psychological distress found among those 108 HIV-infected participants currently experiencing AIDS-related grief symptoms. Among participants experiencing grief symptoms, it had been a mean of ten months since the loss or, for those experiencing multiple losses, since their ‘most significant loss’; 45% of those seropositive individuals indicated that they had assisted in caregiving for the person who died of AIDS. The average Grief Reaction Index score among these individuals was 18.5 (SD 5 10.4, range 2– 48), a level of grief reaction similar to that found in earlier research on AIDS bereavement experience among gay men in New York City (Lennon et al., 1990). The 108 HIV-positive survey participants who were currently experiencing AIDS-related grief symptoms did not differ significantly in gender, age, health status characteristics or psychological variables of depression, psychiatric distress and social support from those

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Table 1. Psychological indices among HIV-infected participants experiencing AIDS-related grief symptoms (n 5 108) Current study Variable

M

Normative data

SD

M %over cut off 55.8 50.5 60.9

SD

Beck Depression Inventory Total Cognitive/affective Somatic

18.1 10.1 8.0

11.0 7.1 5.0

SCL-90-R Global Severity Index Depression Somatization Anxiety Interpersonal sensitivity Hostility Phobic anxiety

1.2 1.6 1.3 1.1 1.3 1.0 0.8

0.76 0.96 0.88 0.87 0.91 0.93 0.88

1.32 1.82 0.92 1.52 1.42 1.12 0.72

0.68 0.94 0.75 0.88 0.89 0.93 0.80

15.5 16.6

6.0 6.5

13.53 9.43

9.1 9.6

Impact of Events Scale Intrusive experiences Avoidance

$

16 5 Depressed1 $ 9 5 Depressed 1 $ 7 5 Depressed 1

1

Clinical cut-offs for depression on the BDI (Beck & Steer, 1993); Norms from a psychiatric outpatient sample (Derogatis, 1983); 3 Norms from a sample of adult volunteers with parent deceased in past two months (Horowitz et al., 1979). 2

HIV-infected AIDS-bereaved participants who were not currently experiencing grief symptoms or who had never experienced an AIDS-related bereavement. Participants reporting grief symptoms did differ significantly from the other participants with regard to race and sexual orientation. More White participants were currently grieving (66.7%) compared to non-White participants (48.9%), v 2 5 5.32, p , 0.05, and more gay/bisexual men were grieving (64.3%) compared to heterosexuals (39.1%), v 2 5 11.42, p , 0.001.

Levels of bereavement and psychological distress To better delineate the magnitude of distress and psychological symptomatology among participants who experienced AIDS-related bereavement and reported grief symptoms, means on clinical scales in the present study were compared to established norms for other clinical populations. As Table 1 shows, participants who reported bereavement due to loss of partners, spouses, friends or family members had elevated scores on the Beck Depression Inventory (BDI); the Global Severity Index (GSI) and clinical sub scales of the SCL-90-R, and the Impact of Events Scale (IES). HIV-infected participants experiencing AIDS-related bereavement had total scores on the BDI full scale and sub scales that exceeded the cut-offs generally used to denote clinical depression. As Table 1 also shows, bereaved HIV-infected participants had scores on the SCL-90-R Global Severity Index and the SCL-90-R interpersonal sensitivity, hostility and phobic anxiety scales comparable (within 6 0.1) to those found in normative samples of psychiatric outpatients. Finally, on the two IES sub-scales— intrusive experiences and avoidance—HIV-infected bereaved participants showed levels of

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trauma that exceeded the levels in a normative sample of persons who had lost their parents to death in the past two months. Bereaved individuals currently reporting AIDS-related grief symptoms varied in their intensity of grief as evidenced by the wide range of Grief Reaction Index scores. We therefore sought to identify correlates of grief severity. Prior to analyses modelling grief reaction scores among bereaved participants, we examined whether grief reaction varied by participant demographic and background characteristics. Univariate regression analyses revealed that severity of grief reaction was not associated with participant age, race, sexual orientation, general health status or CD4 cell count (all ps . 0.10). Severity of grief reaction was also not associated with the length of time since loss or whether the participant had experienced multiple losses (p . 0.10). However, women had significantly higher severity of grief reaction scores (M 5 24.54, SD 5 12.54) than men (M 5 17.68, SD 5 9.83), F(1,106) 5 5.19, p , 0.05. In addition, severity of grief reaction was associated with number of HIV-related illness symptoms experienced by the participant in the past year, F(1, 103) 5 8.67, p , 0.01, with higher grief reaction related to greater number of recent participant illness symptoms. Hierarchical regression predicting grief reactions We conducted hierarchical regression analyses to test the associations of coping, social support and emotional distress with grief reaction. Missing values for the scales were imputed using the best sub-set regression method for the items present (Little & Rubin, 1987). After controlling for gender and HIV-related symptoms, all coping sub-scales were entered as the first block of variables and were found to significantly predict grief, F(5,89) 5 14.6, p , 0.01; accounting for 14.5% of the variance in grief reaction. Inspection of the individual coping scales shows that avoiding coping and emotional suppression were significantly associated with grief; greater avoiding coping and emotional suppression were associated with greater grief. In the second block, social support did not significantly contribute to the explained variance (see Table 2). In the third block, depression added 5.1% to the explained variance, F(1,85) 5 5.09, p , 0.02, and global psychiatric distress added 2.7% to the explained variance, F(1,83) 5 3.28, p , 0.07, over and above the other variables. Thus, grief was most closely associated with avoiding coping strategies, with residual variance related to depression. Bivariate correlations between predictor and criterion variables are shown in Table 3 to identify relationships between predictor variables and to provide explanation for criterion variables entry into the final multivariate model. Ethnicity and coping with grief To explore the possible differences between ethnic groups in grief reactions, we re-performed the hierarchical regressions separately for White and minority sub-groups, controlling gender and HIV symptoms in both analyses. For Whites, coping accounted for 33.7% of the variance in grief, F(5,26) 5 15.56, p , 0.0001. The association was accounted for by avoiding coping and emotional suppression; greater avoiding coping and emotional suppression were related to greater grief. Social support again did not contribute to the explained variance, but depression did, F(2,27) 5 16.7, p , 0.001, adding 11.8% to the explained variance over and above the other variables. Global psychiatric distress did not add to the explained variance for White participants. A different pattern emerged for minority participants, with coping accounting for 10.2% of the variance, F(5,54) 5 6.71, p , 0.001; avoiding coping was the only coping scale to enter as a significant predictor of grief. Social support was not associated with grief over coping.

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Table 2. Summary of hierarchical regression analysis predicting grief adjusted for gender and physical symptoms All subjects (n 5 95) Step scale

R2 b

1. Coping strategies Plan problem solving (factor 1) 2 Avoidant coping (factor 2) Emotional suppression (factor 3) Seeking social support (factor 4) 2 Minimizing (factor 5) 2 2. Perceived social support Total ISEL

White (n 5 35) D R2

R2 b

0.145** 0.145**

Non-White (n 5 60) D R2 b

0.337** 0.337** 2

0.06 1.06**

0.52 0.98**

0.70*

2.10*

0.57

2

0.72 0.64

0.004 2 0.32

2

0.14

2

0.14 1.32**

0.09 0.44 0.145** 0.000

3. Depression Somatic Cognitive/affective

0.14 0.36*

0.196** 0.051*

4. Psychiatric distress (SCL-90-R) Global Severity Index

4.01*

0.102*

0.102*

0.111

0.009

0.152

0.041

0.191

0.039

0.07 0.604** 0.118*

0.223** 0.027*

D R2

0.2 1.04**

0.386** 0.049

2 0.002

R2

0.03 0.32

0.606** 0.002 0.883

4.67

*p , 0.05; **p , 0.01.

Depression and global psychiatric distress did not significantly contribute to grief scores over the other variables. Thus, White and minority persons with HIV/AIDS may differ in terms of their associations between maladaptive coping strategies and grief; avoiding coping, emotional suppression and depression were associated with grief in Whites, whereas only avoiding coping was in minorities.

Table 3. Bivariate associations among grief reaction and psychosocial correlates (1) Grief (1) Social support (2) 2 Depression-cog (3) Depression-som (4) Psychiatric distress (5) Plan problem solving (6) Avoidant coping (7) Emotional suppression (8) Seek social support (9) 2 Minimize (10)

1.0 0.14 0.38* 0.31** 0.47* 0.04 0.44* 0.27** 0.09 0.11

(2)

1.0 2 0.48* 2 0.28** 2 0.47* 0.16 2 0.38* 2 0.02 0.41* 2 2 0.07

Note: sample sizes vary due to missing data. *p , 0.001; p , 0.01.

(3)

(4)

(5)

1.0 0.59* 0.72* 0.16 2 0.46* 0.25* 0.24** 2 0.13

1.0 0.63* 0.05 0.33* 0.15 0.18 0.21

1.0 2 0.02 0.48* 0.33** 2 0.17 0.19

(6)

(7)

(8)

(9) (10)

1.0 0.15 0.31** 0.43* 2 0.23

1.0 0.45* 0.07 0.36*

1.0 0.06 1.0 0.34* 0.20 1.0

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Discussion Persons living with HIV infection and declining health face the prospect of many personal losses, including loss of relationships, employment, lifestyle, sense of control, intellectual or behavioural functioning and ultimately their own early life. Coping with these issues can be more difficult when HIV-positive persons also face the task of coping with the loss of partners, family members and close friends to AIDS. A large majority of HIV-positive men and women, in addition to the challenge of their own illness, have experienced AIDS-related bereavement. Many participants had experienced loss of others close to them, and most had experienced multiple and repetitive losses of friends. Participants who experienced AIDS-related loss exhibited elevated scores on measures of psychological distress including depressive symptoms, general psychiatric symptomatology and traumatic stress related to their loss. These findings indicate that adverse psychological reactions to AIDS-related bereavement are common among people with HIV infection. This study differs from past research examining AIDS-related bereavement among HIV-seropositive persons because it included women and involved a sample that was comprised primarily of ethnic minority individuals; past research has focused primarily on bereavement experiences of White and well-educated gay men in AIDS epicentre cities. Women and minorities have received little research attention in the area of AIDS-related bereavement in spite of the fact that these groups are increasingly affected by AIDS. White participants and gay or bisexual men were most likely to report AIDS-related grief symptoms. However, grief reaction was more severe among women and among participants with greater numbers of HIV illness symptoms. Grief reaction severity was related to the utilization of avoiding strategies in coping with AIDS-related bereavement. Stress and coping theory (Folkman et al., 1991; Lazarus & Folkman, 1984) suggests that the use of distancing and cognitive or behavioural escape is a maladaptive way of coping with AIDS-related bereavement. Participants experiencing more severe grief symptoms scored higher on coping strategy items that included ‘try to forget about the whole thing’, ‘drink alcohol’ and ‘try to keep others from knowing how bad things are’. These results are similar to those found in a sample of bereaved gay caregiving partners where the use of distancing and self-blame coping strategies was related to unrelieved depressive mood, and where finding positive meaning in caregiving predicted diminishing depressive mood over the course of bereavement (Folkman et al., 1996). In our examination of differences between racial groups in coping with grief, we found that maladaptive ways of coping were associated with greater severity of grief reaction for all participants. However, the type of maladaptive coping differed between White and minority participants. Avoiding coping strategies were associated with grief severity among minority participants, while avoiding coping and emotional suppression were associated with grief severity among White participants. Grief reactions in non-minorities were therefore associated with cognitive and behavioural avoidance as well as by emotional suppression, whereas grief in minorities was only associated with cognitive and behavioural avoidance. Further research is needed to identify sociocultural factors related to AIDS-related bereavement in order to appropriately tailor coping interventions. People with HIV/AIDS who engage in active coping strategies, such as seeking out treatment-related information or stress management, have been shown to report higher quality of life (Friedland et al., 1996). Mental health interventions focused on the development of adaptive coping strategies have been undertaken with gay men who are living with HIV infection (Chesney et a., 1996; Folkman et al, 1991). These methods incorporate elements of stress management training and provide a framework for appraising stressful situations and implementing coping strategies that result in adaptive coping and distress

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reduction. Interventions emphasizing the development of adaptive coping strategies, such as seeking social support, finding positive meaning, cognitive restructuring and developing communication and problem-solving skills are promising approaches for assisting those with HIV infection who are also bereaved. Recent research demonstrated the efficacy of a bereavement support group intervention focused on stress and coping for HIV-positive and HIV-negative homosexual men (Goodkin et al., 1999). In prior research, we have found that a support and coping group intervention for persons experiencing AIDS-related bereavement based on these principles can produce reductions in grief reaction and psychological distress (Sikkema et al., 1995). Results of the present study suggest that interventions for coping with AIDS-related bereavement must also take into account therapeutic techniques and strategies used in the treatment of depression, anxiety and post traumatic stress disorder. The present study has a number of limitations. All study participants lived in a single city with moderate AIDS prevalence, and the generalizability of these findings to other cities is not known. Factors that may influence generalizability include the prevalence of HIV infection and AIDS-related bereavement experiences, quality of AIDS care resources and availability of social supports. Because the present study’s design is cross-sectional, causality cannot be determined and the role of bidirectionality must be considered. For example, depression and maladaptive ways of coping may exacerbate the severity of grief reaction, or grief symptoms experienced may produce depression and maladaptive coping. While our study recruitment did not specify that the study’s focus was on AIDS-related bereavement, it is possible that persons volunteering to participate in a mental health assessment study might overrepresent those who are experiencing mental health problems related to AIDS bereavement. Lastly, this study was conducted prior to the availability of highly-active antiretroviral therapy (HAART), which has resulted in a decline in annual rates of mortality due to AIDS in the USA. The extent of AIDS-related bereavement in this era of more effective treatment options for HIV disease is not clear, and further research is needed. The prevalence and seriousness of AIDS bereavement coping problems among HIVpositive persons indicate that bereavement coping is a significant mental health need among persons living with HIV infection. Given the continued increase in HIV infection rates and AIDS deaths that will occur over coming years, interventions are urgently needed to assist persons with HIV infection who are trying to cope with the dual challenges of AIDS-related bereavement and their own health status.

Acknowledgements This research was supported by grants #R01-MH54958 and #P30-MH-52776 (Center Support Grant, Center for AIDS Intervention Research) from the National Institute of Mental Health. The authors extend appreciation to Kenneth Multhauf and Catherine Galdibini for assistance on this manuscript.

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