The psychosocial impact of HIV infection in women

Joumnolof Psychosomnr~ Research, Vol. 37, No 7. pp. 687-696, Prmted an Great Brmin.

THE PSYCHOSOCIAL ANDREA

PERGAMI,*

IMPACT

COSTANZO

1993. 0

OF HIV INFECTION

0022-3999193 W.oO+.M) 1993 Pergamon Press Ltd

IN WOMEN

GALA,? ADRIAN BURGESS,* FEDERICO DuRBmo,t

DANIELE ZANELLO,? MASSIMO RICCIO,* GIORDANO INVERNIZZIt

and

JOSE CATALAN*$ (Received

22 September

1992; accepred

in revised

form 13 May 1993)

Abstract-The aim of the investigation was to study the prevalence of current and past psychiatric morbidity and psychosocial problems in HIV seropositive (HIV+ve) asymptomatic women. A crosssectional controlled study including 57 HIV+ve women belonging to CDC group II and III (43 intravenous drug users and 14 non-IVDUs heterosexuals) and 23 HIV -ve women (15 intravenous drug users and 8 non-IVDUs heterosexuals) is reported. Outcome measures included, past psychiatric history, current psychological status (Zung Anxiety and Depression scales, Symptom Check List 90-Revised), Social Supports and Locus of Control Scales, and information on changes in work, social and sexual life after HIV testing. Results showed that HIV+ve women differed very little from HIV-ve controls regarding outcome measures and indeed for some variables HIV infected women had lower levels of psychological morbidity. Multiple regression analyses showed that alcohol misuse and a predominantly external locus of control accounted for the 29% of the variance of psychiatric distress (F= 9.23, p < 0.0006). The implications of the findings are discussed.

INTRODUCTION

HUMAN Immunodeficiency Virus (HIV) disease has been only recently recognized by researchers as a major health problem in women [ 11. Women accounted for 10% of Acquired Immune Deficiency Syndrome (AIDS) cases in the U.S.A., 13 % in Western Europe, and between 40 and 50% in Africa and it is estimated that about 3 million women worldwide are currently infected with HIV [2] . Recent epidemiological data have shown an increase in mortality and morbidity rates among women with AIDS [ 31 and HIV disease has already become one of the leading cause of death in women aged 15-44 in some major cities of the U.S.A. and Western Europe [ 4, 5 ] . Although these numbers underline once again that HIV disease is no longer confined to particular male ‘high risk’ groups such as gay men and intravenous drug users, until recently little attention has been given to the psychological impact of HIV infection in women [6] . It has been suggested that HIV disease may have greater psychosocial consequences on women compared to men [7]. Early and recent reports have addressed the psychosocial and psychiatric problems of HIV seropositive (HIV +ve) gay men [ 8-111, HIV +ve men with haemophilia [ 12, 131, HIV +ve intravenous drug users (IVDUs) and heterosexuals [ 14-161 but to date available studies on HIV+ve women have included only case reports [ 17-181, studies without control groups [ 19-211 or controlled studies with small sample size [22] .

*Department of Psychological Medicine, Chelsea and Westminster Hospital, Charing Cross & Westminster Medical School (University of London), 369 Fulham Road, London SWlO, U.K. tmstitute of Psychiatry, Psychiatric Clinic I, University of Milan Medical School, Ospedale Policlinico, Pad Guardia II, Via F. Sforza 35, 20122 Milan, Italy. SAuthor to whom correspondence should be addressed. 687

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A. PERCAMI et al.

In addition, current psychopathology in HIV +ve individuals has been associated with a past history of mood and substance misuse disorders, with rates of lifetime prevalence of these disorders prior to HIV varying from 30 to 80% [ 8, 9 ,23, 241 and, according to the little evidence available in women, similar proportions may be found in this group [ 19, 25, 261. It is conceivable that adaptation to HIV infection in women may be more difficult compared to men because of discrimination, socioeconomic disadvantages, medical problems and lack of organized supportive services [ 6, 271. It is therefore important to have a better understanding of psychosocial problems in women with HIV disease in order to provide adequate care and support to subjects at risk and to those already infected. The aims of this study were: (i) to establish the prevalence of current and past psychiatric morbidity among HIV+ve women belonging to two transmission categories (intravenous drug users and non-IVDUs heterosexuals) and to compare them with HIV sero-negative (HIV-ve) women from the same group; (ii) to identify factors associated with psychological morbidity. METHODS Subjects Index group (HIV+ve women). Seventy-one women recruited at the Out-patients Service of the Department of Infectious Diseases of the University of Milan Medical School, Milan, Italy during the period January 1988-July 1990 were approached and a total of 57 agreed to enter the study (response rate: 80%). Analyses of clinical records showed no statistically significant differences in age, sex or education between women who did agree to enter the study and those who did not. Milan has one of the highest prevalence rates of HIV infection in Italy [28] and is one of the likely starting points of the AIDS epidemic in Italy [ 291. All subjects had been given HIV tests in the past, and all had been tested again at the time of entry into the study [time elapsed since the first HIV test: 20.5 months (SD 1.0); (range 1-45 months)] HIV status was established by ELISA, confirmed with the Western Blot test, and all individuals were asymptomatic, meeting the Centers for Disease Control Criteria for group II and III [30]. Women were classified by clinical interview into two mutually exclusive subgroups according to their likely route of infection with HIV: intravenous drug users (IVDUs), where infection had occurred through using infected needles or syringes or sexual intercourse [N = 43 (75%)] ; and non IVDUs heterosexuals [N = 14 (25 %) ] , where infection was attributable to unprotected sexual intercourse. NonIVDUs heterosexual women were all current or former partners of male HIV +ve IVDUs, and no HIV transmission from bisexual or non-IVDUs heterosexual men was identified. HIV control group (HIV- we women). Thirty women requesting HIV testing at the same centre as the index group and during the same period were approached and a total of 23 were entered (response rate: 75 %). Similarly to the index group, no statistically significant differences in socio-demographic variables were found between women who entered the study and those who did not. All women had been subjected to HIV tests in the past and all had just been tested negative for HIV antibodies at the time of the interview [time elapsed since the first HIV seronegative testing: 18.7 months (SD: 1.8); range l-421 Subjects were also categorized by clinical interview in two subgroups: intravenous drug users (IVDUs) [N = 15 (65%)] and non-IVDUs heterosexuals [N = 8 (35%)] Non IVDUs heterosexual women were current or former partners of male HIVfve IVDUs.

Socio-demographic dam. Information on age, level of education, employment status, marital status, family situation and transmission categories of the respondents, and time elapsed since HIV diagnosis and HIV testing were collected. According to the Italian schooling system, education up to 8 yr was considered primary education, up to 13 yr secondary education, and more that 13 yr college or university education. Psychiarric hisrorq. Psychiatric history was assessed by means of a semi-structured interview aimed

The psychosocial

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at collecting information about the following. (1) Family and personal history, with particular attention to alcohol and drug misuse history. Subjects were considered to have a past psychiatric history if they had received out-patient psychiatric care or had been admitted to a psychiatric hospital at some point before HIV testing, (2) History of alcohol misuse. In agreement with DSM-III-R criteria, alcohol/drug misuse was defined as a maladaptive pattern of substance misuse indicated by continued use despite knowledge of having a persistent or recurrent social, occupational, psychological, or physical problems caused or exacerbated by the psychoactive substance [ 311. (3) Deliberate self-harm (DSH) before and after the knowledge of HIV seropositivity and HIV testing. DSH was used as a definition that included deliberate self-poisoning and deliberate self-injury [32] In the field of substance misuse, there are difficulties in differentiating deliberate self-harm from accidental overdoses of heroin. Only cases of deliberate overdose of heroin or other drugs with stated suicidal intent were regarded as DSH. (4) The occurrence of Early Life Events (ELE) [33] such as separation and loss before the age of 10, separation from both parents by disease, death, divorce or severe disease of the patients. Current psychological S~UZUS.Current psychological status was established by means of standardized self-report instruments: Zung Self-Rating Anxiety Scale (ZSAS) [34], Zung Self-Rating Depression Scale (ZSDS) [ 351 and Symptom Check List 90.Revised (SCL 90-R) [ 361. The ZAS and ZDS are selfrating scales for assessment of anxiety and depression. Each scale consists of 20 items rated on a scale of O-4 according to frequency of occurrence. ZSAS scores higher than 45 and ZSDS scores higher than 50 are considered cut-off levels for abnormality. The SCL 90-R is a self report rating scale used to assess psychopathological characteristics of out-patients. It consists of 90 items grouped into nine primary subscales describing different aspects of psychopathology: somatization; obsessive-compulsive symptoms; interpersonal sensitivity; depression; anxiety; hostility; phobic anxiety; paranoid ideation; and ‘psychotic’ experiences. In addition, a global severity index can be derived. The SCL 90-R is concerned with the current state of the respondent and has been found to be comparable to Present State Examination (PSE) in the identification of psychiatric cases [37] Social supporrs.Social supports (SS) were evaluated by means of a three-item self-rating scale rated from 1 to 4 (1 = always; 2 = often; 3 = sometimes; 4 = never). The scale enquires to what extent the subject could express personal feelings (‘When I feel the need, there is always somebody I can speak to’); and felt loved and understood by partners, family and friends (‘There is always somebody I felt very close to me’; ‘People seem to understand my problems’). In order to enhance the power of the statistical analyses, subjects were categorized into good SS (score l-4). poor SS (5-8) and very poor SS (9-12). Locus of confrol. Locus of control was assessed by means of a 7-item version of Rotter Forced-Choice Locus of Control scale [ 381 The scale measures the extent to which a person feels in control of her life as opposed to external factors control. Currenr social siruafion. Significant changes in social, work, and sexual life were evaluated by means of a semistructured interview. Questions on changes in socinl life included reduction of social contacts, loss of partner or friends and social isolation; changes in work life included dismissal or voluntary resignation, reduction in work time, job change, and reduced interest at work; changes in sexual life included reduction of partners, condom use, and sexual abstinence. Procedure Each subject was approached and interviewed during a scheduled research clinic visit by one of the research psychiatrists (A.P., C.G., F.D., D.Z.). All patients knew their serological status and gave informed consent to enter the study. Practical difficulties made it necessary the use of non-standardized interview and questionnaire, amongst them problems in compliance with the transmission categories of HIV+ve and HIV-ve women using intravenous drugs, and manpower difficulties related to a high admission rate of patients to the out-patients clinic. Statistical

analysis

Data were analysed using the Statistical Package for Social Sciences (SPSS-PC) [39]. One-way analysis of variance (ANOVA) and the Scheffe’ test were used for multiple comparisons. Chi-square and Fisher’s exact test were used for analysis of categorical data. Multiple regression analyses using SCL 90-R global severity index as the dependent variable were used to study factors associated with psychiatric and psychosocial distress. All analyses used the 0.05 level of significance and the statistical power of the two-tailed f-test in these analyses, with o( = 0.05, assuming a medium effect size (d = 0.5), was 53% [40].

690

A. PERGAMI cl (11. RESULTS

Socio-demographic

characteristics

of the subjects

A total of 80 women, including 57 HIV+ve CDC II and III subjects (index group) and 23 HIV-ve subjects (control group) were included in the study. Both groups of subjects were comparable in age, marital status, employment, level of education, and time elapsed since HIV testing (Table I). TABLE I.-SOCIO-DEMOGRAPHIC

CHARACTERISTICS OF

Months

yr: since first HIV test:

N (%)

N (%)

43 (75)

15 (65)

14 (25)

8 (35)

Mean (SD)

Mean (SD)

26.2 (3.0) 10.7 (1.0)

26.2 (6.3) 11.2 (1.7)

20.5

18.7 (1.8)

(I .O)

N (%)

N (‘%) Employment Status: Full-time Part-time Student Other Unemployed

25 7 6 7 12

Marital status: Single Married Separated/divorced Widowed

Psychiatric

and psychosocial

(44) (12) (11) (12) (21)

6 3 3 5 6

40 (70) 12 (21) 4 ( 7) significant

characteristics

differences

(26) (13) (13) (22) (26)

16 (69) 6 (26) -( )

1 ( 2)

There were no statistically

SAMPLE

HIV -ye N = 23

Transmission categories: IVDUs Non IVDUs Heterosexuals

Age, y’: Education,

THE

HIV fvc N = 57

1( 3 between the two groups.

of the sample

Psychiatric history. About one-third of women had a family history of psychiatric disorders and about one-fifth of women had a personal psychiatric history before HIV testing. In both groups, early life events were reported by half of the women and a past history of alcohol problems was reported by 16 (28 %) HIV + ve women and 3 (13%) controls. Eight HIV seropositive (14%) and five HIV seropositive women (22%) had a deliberate self-harm (DSH) episode before HIV testing. Overall, HIV +ve and HIV -ve women did not differ significantly on the above characteristics concerning past psychiatric history. However, HIV+ve women were more likely to have a DSH episode after HIV testing than HIV -ve women (p < 0.05) (Table II). Social supports. Ten per cent of HIV +ve women (N = 6) and 18% of HIV -ve women (N = 4) reported good SS. On the other hand, poor SS were found in more than half of HIV +ve and HIV -ve women and very poor SS were found in about

The psychosocial

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one-third of women. No statistically significant differences were found between groups concerning the availability of social supports (SS) (Table II). Locus of control. HIV +ve and HIV -ve women did not differ significantly in their perceived locus of control (Table II). TABLE

II.-PSYCHIATRIC

AND

PSYCHOSOCIAL CHARACTERISTKS SAMPLE

OF THE

HIV + ve N=57

HIV-ye N = 23

N (%)

N (%)

Family history of psychiatric disorders:

19 (33)

9 (39)

Early

27 (47)

12 (52)

15 (17)

6 (26)

16 (28)

3 (13)

Deliberate self-harm: Before HIV testing: Afrer HIV testing:

8 (14) 12 (21)*

5 (22) 0 ( 0)

Social supports: Good social supports Poor social supports Very poor social supports

6 (10) 39 (68) 12 (22)

4 (18) 12 (52) 7 (30)

4.1 (1.8)

3.6 (1.7)

life events:

Personal

psychiatric

history and

before HIV diagnosis

testing: History

of alcohol

misuse:

Locus of control: O-3 = external mean 4-7

=

(so)

internal

*p < 0.05.

Current

social situation

About 10% of HIV+ve and 5% of HIV-ve women changed in some way their work life after HIV testing. Twenty-seven percent of HIV+ve women (N = 15) experienced changes in their social situation after HIV diagnosis compared to 5% (N = 1) in the HIV -ve control group (p < 0.05). Sexual life was severely disrupted in about two-thirds of women: six HIV + ve women (14 %) and one HIV - ve women (7%) reported sexual abstinence after HIV testing (Table III). TABLE

III.-LIFE CHANGES

AFTER HIV DIAGNOSIS AND TESTING

HIVfve N=57

HIV - ve N = 23

N (%)

N (%)

Social

life

15 (27)*

1 ( 5)

Work

life

5 ( 9)

1 ( 5)

42 (74)

14 (61) 2 (14) 10 (72)

Sexual life Reduction of partners Condom use Reduction partners + condom use Sexual abstinence Other *p < 0.05

1 ( 2) 22 (53) 7 (17) 6 (14)* 6 (14)

0 ( 0) 1 ( 7) 1 ( 7)

A. PERGAMI et ul

692

Current psychological

status

Zung Anxiety and Depression Scales. Index and control groups’ mean scores showed that HIV-ve scored worse, but not significantly so, than HIV+ve women (Table IV). Scores for abnormality on the ZSAS (> 45) and on the ZSDS (> 50) showed that nearly half of the HIV +ve women had pathological anxiety levels (HIV+ve: N= 26, 45%; HIV-ve: N= 11, 48%). Similarly, nearly 50% of HIV +ve and over 50% of HIV -ve women had depression scores above the cut-off levels for abnormality (HIVfve: N = 26, 45%; HIV-ve: N = 13, 56%). Symptom Check List 90-R. Statistically significant differences were found between HIV - ve and HIV +ve women in the following SCL 90-R subscales: global severity index (p < O.Ol), hostility (p < O.Ol), paranoid ideation (p < O.Ol), interpersonal sensitivity (p < O.Ol), depression (p < 0.03) and anxiety (p < 0.04). In all these cases, HIV -ve women had less favourable scores than HIV +ve ones. TABLE IV.-CURRENT

PSYTHOLOGICAL. STATUS OF THE SAMPLE HIVfve N = 57 Mean

Zung scale

self-rating

Zung scale

self-rating

HIV - ve N = 23

(SD)

Mean (so)

anxiety 47.2

(13.0)

47.7

(11.3)

51.1

(15.5)

53.8 (12.9)

59.0 60.0 60.8 57.4 60.0 59.3

(11.1) (I I .3) (10.5) (11.3) ( 9.5) (10.2)

66.0 66.0 69.2 65.0 66.3 65.6

depression

Symptom check list 90 revised Interpersonal sensitivity Depression Anxiety Hostility Paranoid ideation Global severity index

(16.3)* (13.5)** (16.2)*** (16.7)* (14.3)* (13.5)*

*p < 0.01. **p < 0.03. ***p < 0.04.

Psychosocial

factors

associated

with psychiatric

distress

Multiple regression analyses using SCL 90-R global severity index as the dependent variable, and socio-demographic data, HIV status, psychiatric history, psychological status, social supports and locus of control, current social, work, and sexual life as independent variables were performed. Alcohol misuse (AM) and an external locus of control (ELOC) accounted for the 29% of the variance in predicting psychiatric distress (AM: cum. var.: 20%; F = 11.02, p < 0.002; ELOC: cum. var.: 29%, F = 9.23, p < 0.0006). DISCUSSION

The main findings of the study were: HIV+ve women did not differ from HIV-ve controls regarding past and current psychiatric morbidity, indeed for some variables they had actually lower levels of psychological distress than HIV -ve women;

The psychosocial impact of HIV infection in women

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variables such as alcohol misuse and an external locus of control predicted levels of psychological distress to a greater extent than HIV serostatus itself. The samples studied were demographically representative of the population of women with HIV disease in Italy [28] and the majority of eligible subjects were included in the survey. The prevalence of IVDUs (75% in the index group and 65% in the control group) reflects the situation of HIV disease in the European Community as a whole, especially in Italy, France and Spain [ 411. While no overall differences were found between groups regarding a past personal history of psychiatric disorders prior to HIV testing, it is interesting to note that seropositives were more likely to have made acts of deliberate self-harm after they had learnt their test results. There is some evidence that suicidal behaviour is increased in HIV infected individuals [ 42, 431 , especially in those with a past history of psychiatric disorders or DSH [44] , and our results extend these findings to HIV + ve seropositive women, highlighting the need for awareness of this possibility amongst clinicians caring for them. In agreement with our previous findings using the same questions on SS and including other transmission categories of HIV disease (gay men, male IVDUs and heterosexuals) [ 14-16, 441 perceived levels of social support were generally low for both groups of women, although the differences were not significant, possibly reflecting the general demographic characteristics of individuals at risk of HIV infection, rather than the specific HIV serostatus. Social support is an important factor in the prevention of psychosocial distress [ 12, 341 and it is therefore worrying that such large proportion of subjects felt unsupported. It was against our expectations to find that levels of current psychological status were not worse in HIV+ve women than in controls on the self-report measures, although both groups of subjects showed generally high levels of anxiety and depression. Some studies involving gay/bisexual men [ 11, 461, drug users and heterosexuals [ 16, 24, 273 have shown a similar lack of differences between HIV infected and non-infected individuals, although others have found differences [ 10, 131. There are a number of possible explanations for these discrepancies. Our seronegative subjects, which consist mainly of IVDUs and their partners, might have seen themselves at continuing risk of HIV infection, which in turn could have affected their psychological status [ 16, 481. Furthermore, asymptomatic HIV women may have adopted coping strategies to minimize their psychological morbidity [ 14, 501. Finally, pre-existing psychological difficulties in women who saw themselves at risk and sought HIV testing might have contributed to their high levels of psychological distress. Subjects reported a significant impact on sexual life, with few differences between groups. Condom use was not universal, in particular for the HIV+ve group, where almost half of the sample did not use condoms regularly. This is’ an important area of concern, and one that indicates the need for further psycho-educational interventions. Disruption of sexual behaviour in HIV +ve women [ 211 , and also in women attending STD clinic has been reported elsewhere, and this suggests that counselling and support should be available in the setting where women at risk of HIV infection are receiving medical care. A study of the factors associated with high SCL 90-R global scores showed the

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importance of substance misuse as a contributing factor. In addition, the finding of an external locus of control as another important predictor for psychiatric distress is consistent with earlier findings showing a prevalence of ‘externals’ in subjects infected with HIV belonging to different transmission categories [ 141 . Coping strategies have been found to play a central role in psychological adjustment to HIV disease [ 5 1, 521 replicating evidence in other chronic illnesses [ 53 ] . Interestingly, HIV status was not a predictor of psychological distress in this sample, highlighting the importance of personality factors and pre-existing disturbances in relation to the development of psychological morbidity. A number of limitations are present in our study, amongst them the fact that the HIV + ve and HIV - ve women had been tested before the study, some on several occasions, and this might have affected the results. In addition, although both our HIV+ve and HIV -ve women were seeking HIV testing at the same service-based infectious disease clinic in one of the largest metropolitan areas of Italy such as Milan, our sample cannot be considered representative of women with HIV disease in non-metropolitan communities. It is possible that the sero-negative group might have included individuals seeking reassurance by requesting repeated HIV tests [54] . The result of this could be an increase in the psychopathological levels in HIV-ve women, thus reducing differences in psychological distress between the index and control group. Finally, the possible presence of cognitive abnormalities as a confounding factor in psychiatric interviewing and testing in HIV disease has been raised in earlier studies although most recent surveys have shown that psychiatric disorders cannot easily be confounded with cognitive impairment [23] and that, as a whole, individuals with asymptomatic HIV infection do not show neurobehavioural abnormalities [ 55 ] . In conclusion, our study showed that women with or at risk of HIV disease show high levels of anxiety, depression and distress, as well as other evidence of psychological and social morbidity that necessitate the provision of psychological support and raise the urgent issue of appropriate intervention and tailored strategies to prevent risk of infection in women at risk and support better those already infected. Acknowledgemenrs-This study was supported by grant 6202/018, Italian National Research Project on AIDS 1990-1991, Subproject on psychosocial and psychiatric aspects (Prof. C. Gala. Drs A. Pergami, F. Durban0 and D. Zanello) and by a 1990-1993 research grant on the neuropsychiatric and psychosocial aspects of AIDS (Dr A. Pergami) from lstituto Superiore di Sanita’ (Italian National Institute of HeaIth), Rome, Italy. The authors wish to thank Profs M. Moroni and A. Lazzarin, Drs C. Gervasoni & T. Bini (Dept of Infectious Diseases. Sacco Hospital, University of Milan Medical School) for their clinical assistance.

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