Psychological distress among minority and low-income women living with HIV

Psychological distress among minority and low-income women living with HIV

Sheryl L. Catz

The incidence of HIV infection among women in the United States has increased significantly over the last decade. According to the Centers for Disease Contol and Prevention (CDC), between 120,000 and 160,000 adult and adolescent females are living with HIV or AIDS, and the proportion of female AIDS cases has more than tripled in recent years, from 7% in 1985 to 23% in 1999. (1) Minority women are especially vulnerable to this disease. In 1999, almost two thirds (63%) of all women with AIDS were African American. Taken together, African Americans and Hispanics accounted for more than three quarters of AIDS cases in females, although the 2 ethnic groups make up only one quarter of US women. (1) The growing incidence of this disease among minority and low-income women makes it important to understand how the disease process affects these individuals.

Women’s psychological well-being or the lack thereof (psychological distress) is an issue of particular importance. Higher levels of psychological distress have an adverse influence on quality of life and have been linked to poor treatment adherence (2) and higher rates of risk behavior for HIV transmission (3) among persons who are living with HIV/AIDS.

Psychological distress is a common finding among persons living with a chronic, life-threatening illness. (4-7) This is particularly true of persons diagnosed with HIV or AIDS. A person’s seropositive notification is often accompanied by depression, suicidal ideation, suicide attempts, anxiety, and other somatic and psychological symptoms of distress. (8-10) The most frequent psychiatric diagnosis associated with HIV is an adjustment disorder with features of anxious, depressed, or mixed mood. (11) Penzak (12) and associates estimated the lifetime prevalence of major depression among persons living with HIV at 22%-45%, whereas lifetime depression occurs in about 17% of the general population, according to data from the National Comorbidity Survey (NCS).13 Among people in the NCS, rates of depression and anxiety disorders were higher among women than among men.

Although it is known that people diagnosed with HIV and AIDS experience symptoms of anxiety and depression, our understanding of this issue is chiefly based on research among men. Very few psychosocial studies have been focused on women living with HIV and AIDS, especially minority and low-income women with the disease. This is unfortunate because the work that has been done suggests that HIV-positive women may experience even higher levels of psychological distress than HIV-positive men do. (14-16) The difference in distress levels is attributed to disparities in contextual and sociocultural issues, such as poverty, childcare responsibilities, responsibilities for giving care to others infected with HIV, and the differential stigma and social isolation that women living with HIV experience. (17) As the AIDS epidemic continues to grow among women, more research on this group is called for. In particular, researchers need to focus more on minority and low-income women outside of the major disease epicenters because these individuals represent women who do not have access to the treatment and community resource infrastructures frequently available in larger cities.

In conducting this study, we sought to evaluate psychological distress in minority and low-income women living with HIV and AIDS in a midsize city in the southeastern United States. We defined distress by current depressive symptoms and anxiety. Furthermore, we sought to determine whether psychosocial factors contributed to the level of the women’s distress beyond the effect of their medical condition and other demographic factors. In particular, we were interested in self-reported coping styles, perceived social support, and recent stressors. We chose these factors because of their theoretical and empirical associations with psychological distress among persons with chronic diseases, including HIV, (18-23) and because they offered potential venues for cognitive–behavioral intervention. For instance, the lack of available childcare may be a source of distress for women, but treatment would not realistically include providing childcare to women whenever care is needed. Rather, it would focus on improving the woman’s problem solving and coping skills, which could indirectly affect the way individuals handle such potentially distressing issues.

This study represents one small step in increasing our understanding of the poor and minority women among whom the numbers of new HIV infections and AIDS cases are continuing to rise.


Participants and Setting

Our sample consisted of 100 women who were receiving medical care from an HIV outpatient clinic at a public hospital in Baton Rouge, Louisiana. This clinic provides medical and auxiliary social, psychological, and health education services for outpatients with HIV/AIDS. It serves a population of men and women who have a primarily low socioeconomic status (SES) and are medically uninsured.


We recruited participants during intake, primary care, and gynecological appointments at the HIV clinic. The sample included all of the seropositive women who agreed to participate who were aged at least 18 years and could read. Approximately 80% of the patients we reached agreed to participate. Participants provided written informed consent and were assured that their responses would be confidential. We interviewed them in a private room at the clinic for demographic information, asked them to complete self-report psychosocial measures, and paid them $5 for their participation. Hospital and medical school institutional review boards approved our research protocol.



We used the Center for Epidemiological Studies Depression Scale (CES-D) (24) to assess recent depressive symptomatology. The CES-D has been extensively used to characterize depressive symptoms among persons living with HIV. (25) It taps cognitive, affective, and somatic aspects of depression, and it is advantageous because it minimizes confounding of symptoms between HIV and depression. (3) Symptom frequency is scored on a 4-point Liken-type scale; scores range from 0 to 60, with higher scores reflecting greater depressive symptomatology. The mean score for the general population is approximately 8. Scores below 15 indicate depressive symptoms from none to mild, scores between 16 and 22 indicate probable clinical depression, and scores of 23 or greater indicate significant symptomatology or probable clinical depression. (26)


We used the State form of the State-Trait Anxiety Inventory (27) to assess current anxiety. Scores on this scale range from 20 to 80. The median score is approximately 33 for women in a community sample and approximately 42 for general medical patients. (27)

Life Stress

To measure occurrence of major life stressors, we used the Social Readjustment Rating Scale (SRRS). (28) Participants used this checklist of 43 major life events (eg, death of a spouse, change in living conditions) to indicate which stressors they had encountered in the past 6 months. Miller (29) cites extensive evidence in support of the psychometric properties of the SRRS, including its use with ethnically and medically diverse populations.

Social Support

We measured perceived social support with the Interpersonal Support Evaluation List (ISEL), (30) a 40-item questionnaire that yields an aggregate social support score made up of 4 subscale scores. Each subscale represents a different type of perceived social support (ie, Appraisal, Belonging, Self-esteem, and Tangible). Higher ISEL scores indicate greater perceived social support. The ISEL has been used with HIV-infected outpatients, and the aggregate score has acceptable test-retest reliability (.87). (30)


To assess coping, we used the Ways of Coping Questionnaire (WOC), (31) which asks participants to indicate how often they used each of 66 strategies to cope with their HIV status. The WOC has demonstrated acceptable reliability and validity with HIV-infected persons. (32) We evaluated the following 2 subscales in the present study: (1) Planful Problem Solving, 6 items (eg, concentrating on what to do next) and (2) Escape-Avoidance, 8 items (eg, wishing the situation would go away). We chose these subscales to assess the domains of problem-focused and emotion-focused coping.

Time Since HIV Diagnosis

All women had tested HIV-positive before receiving outpatient clinic services, so we assessed the time since diagnosis by asking women when they were first notified that they were HIV-positive and then converted responses into months since diagnosis.

CD4 Counts

We obtained absolute CD4 counts at the time the individual entered the study from the routine laboratory reports in patients’ medical charts. Absolute CD4 T-cell counts/[mm.sup.3] were the most common index of HIV disease status at the time we collected our data. Lower CD4 counts reflect a more advanced stage of disease progression.

Demographic Characteristics

Each participant also provided information on her age, ethnic background, education level, annual income, current relationships, and probable modes of HIV infection.

Data Analysis

We used descriptive statistics to examine the demographic profile of the women in the study sample and to assess current levels of psychiatric distress (ie, CES-D and STAI scores). Next, we conducted 2 a priori sets of hierarchical multivariate regression analyses to identify psychosocial (social support, coping, stress) predictors of depression and anxiety after we controlled for disease status, length of HIV diagnosis, and education level. For all statistical tests, we used alpha of .05 (two-tailed).


Demographic Characteristics

See Table 1 for demographic and medical characteristics of the 100 participants. Nearly all of the participants were from minority ethnic groups (84% African American and 1% Hispanic) and were low income (87% earned less than $10,000 annually and 11% earned $10,000-20,000/year). These demographic characteristics and income levels are representative of the predominantly lower SES population of women served by the clinic. Nearly one third (29%) reported that they had ever used injection drugs, and half said that they had sexual contact with a partner who used injection drugs. Only 10% were married. Their mean age was 31 years, and most had a high school education. On average, the women had been diagnosed with HIV for 20 months. With respect to disease status, the participants had current CD4 counts in the following ranges: 22.2% 500 cells/[mm.sup.3]. The mean CD4 count was 445 (SD = 321; range = 2-1554).

Psychological Distress Among Women Living With HIV

We defined psychological distress as recent depressive symptomatology and current anxiety. The mean CES-D depression score for women in this sample was 24.9 (median = 24.5; SD = 12.5; range = 0-55; N = 100). This score falls within the range of significant depression on the CES-D and may be indicative of clinical depression. (26) In fact, more than half of the women surveyed (56%) reported significant symptoms of depression, and one fifth had scores in the range indicative of probable depression (eg, 16-22). One fourth of the women’s depression scores were nonsignificant (eg, 0-15). (26)

The mean STAI state anxiety score was 43.0 (SD = 14.0; range = 20-75; N = 76) and the median score was 41.5. The median score was significantly higher than has been reported among women of comparable ages in community samples (eg, 33) but was similar to that reported for adult medical outpatients (eg, 42). (27)

Multivariate Regression Models of Depression and Anxiety

Next, we examined the influence of psychosocial functioning on anxiety and depression. Because different sets of psychosocial factors associated with depression or with anxiety may have different implications for treatment, we tested 2 hierarchical multiple regression models. Each model examined the influence of psychosocial functioning on anxiety or depression after controlling for relevant disease and demographic characteristics (ie, disease severity, time since HIV diagnosis, and education). We entered control variables in Block 1, followed by the psychosocial variables (ie, perceived social support, frequency of major life stressors, escape-avoidance coping, and planful problem solving; see Table 2).

The overall multivariate depression model was significant, [R.sup.2] = .46, F(7, 89) = 10.04, p < .001, and showed that greater escape-avoidance coping, less social support, less planful problem solving, and more life stressors contributed independently to elevated depressive symptoms. We found that medical and education factors as a group were not significantly associated with depression.

The overall multivariate anxiety model was also significant, [R.sup.2] = .44, F(7, 69) = 6.96, p < .001. In this model, however, medical factors as well as psychosocial factors were significantly associated with anxiety. Shorter times since diagnosis were associated with greater anxiety, as were higher stress levels, less social support, and less planful problem solving. Escape-avoidance coping was not a significant predictor of anxiety symptoms.


In the present study, we examined psychological distress in a sample of low-income and minority women in Louisiana who were living with HIV. The composition of the sample was an important strength of the study. Study participants were representative of women treated for HIV disease in the region of the United States where women’s rates of HIV infections are growing fastest. (1) Many previous studies examined psychosocial adjustment to HIV among men, persons of relatively higher socioeconomic status, or those living in HIV epicenters, (6,33) but relatively little is known about how low-income and minority women cope with HIV disease. Our current findings contribute to the AIDS psychosocial literature by examining the presence and predictors of psychological distress (depression and anxiety symptoms) among a relatively understudied but growing population of persons living with HIV and AIDS.

Women in this sample were experiencing significant psychological distress. Three fourths reported mild to severe depressive symptoms on the CES-D norms, and their anxiety levels were elevated in comparison with those of community norms. Our findings that these participants reported a wide range of life stressors were consistent with Kalichman and associates’ previous findings among people from lower SES groups who were living with HIV. (34) On average, the participants had experienced nearly 7 major life events in the past 6 months, and the majority of the women were living below the poverty level. We do not know how many of these women were caring for children, had other significant care responsibilities, or shared household responsibilities with other adults, but only 1 in 10 was married. Although the number of women with partners living in the home is unknown, it appears that most women did not have consistent support from spouses.

We sought to understand how the women’s health status, demographic background, and psychosocial factors contributed to their distress. Because of their demographic homogeneity (eg, most were African American, all were female, most were single, all were low income), we limited the demographic variables to education. Because treatment strategies to reduce symptoms of anxiety and depression may differ, we examined each separately. Interestingly, the time since HIV diagnosis was significantly associated with anxiety but not with depression. The reason for this disparity is unclear, although in both models psychosocial factors accounted for a significant portion of the variance in our distress measures after controlling for health and education. Higher levels of stress were associated with greater endorsement of both depression and anxiety. Moreover, fewer active coping strategies and perceptions of fewer social supports contributed to greater anxiety and depression. Finally, avoidant coping contributed to depression, but not to anxiety.

These findings are consistent with outcomes from other studies that compared psychosocial functioning among lower SES individuals with functioning of people from higher SES levels. Compared with persons of higher economic status, persons of lower economic status often experience more stressful life events. (35,36) They may also experience more psychological distress than their counterparts from higher SES groups, even when they face equivalent levels of stress. (37) Furthermore, people from lower SES groups have been shown to use relatively more avoidant coping and less active coping strategies to manage their stress. (38)

It is tempting to conclude that the women’s emotional distress is a reflection of factors unrelated to HIV, such as poverty and its associated burdens, more than as a reflection of their HIV status. However, the current study design does not allow us to address this question directly. The high levels of psychological distress reported in this study were related, in part, to the occurrence of recent major life events, a lack of perceived social support, and the women’s use of avoidant coping as opposed to active coping strategies. It is not clear how distressed these women would have been had they not been infected with HIV, but it is reasonable to assume that this diagnosis also plays an important role in their psychological well-being.

Study Limitations

Several limitations should be noted. First, we used a convenience sample in our study. We have no indication that women who refused to participate were systematically either more or less distressed than those whom we included, but it is possible that these results may not generalize to all women who were receiving care at our clinic. Moreover, it is possible that these results may not generalize to minority or low-income women in other areas of the country. Also, by including only women of lower SES in the investigation, we were unable to make direct comparisons between the psychological distress and coping reported by women and by men living with HIV, between those of higher and lower SES, or between HIV seropositive and seronegative women. Furthermore, we used a cross-sectional design that precluded causal interpretation of the data. However, these findings establish the importance of identifying and addressing the diverse mental health needs of women living with HIV/AIDS.

Implications for Care

We were careful not to overgeneralize from this single sample of women, but our results do have some implications for care. The high levels of anxiety and depression we found are cause for concern. Clinical and subclinical levels of anxiety and depression can have an important influence on the medical management of HIV. Distressed women may have poorer health outcomes if they have difficulty getting to medical appointments, following provider instructions, or taking prescribed HIV medications because of their distress. (2,39) The harmful side effects of emotional distress on proper medical management are particularly regrettable because these symptoms are readily treatable with pharmacotherapy and cognitive-behavioral interventions. (40) For example, Antoni and colleagues (41,42) found that stress management interventions that included training in skills in coping, social problem solving, and relaxation were effective in reducing psychological distress in men living with HIV. Given the patterns of coping, social support, and stress in the present study, we suggest that it is likely that a similar approach may also improve women’s psychosocial adjustment. In the current study, all of the clinic patients had access to mental health services, but access alone is not enough–concerned clinicians should promote efforts to ensure that women take advantage of these services.


The findings from the current study suggest that minority and low-income women living with HIV and AIDS experience significant amounts of psychological distress. The emotional effects of being HIV seropositive are compounded in these women, who may already be prone to high levels of anxiety and depression as a consequence of their low SES. As infection rates and the incidence of AIDS cases continue to grow among impoverished and minority females, researchers must continue their efforts to understand and address this at-risk population’s emotional needs.


Demographic, Medical, and Psychosocial

Characteristics of Sample

of Women Living With HIV

Variable % M SD

Demographic characteristics


African American 84

White 15

Hispanic 1

Annual income ($)

< 10,000 87

10,000-20,000 11

20,000-30,000 2

Marital status

Single 62

Divorced 17

Married 10

Widowed 3

Other 8

Injection drug use history

Self 29

Sexual partner 51

Age (y) 30.8 7.9

Education (y) 11.9 1.9

Medical characteristics

CD4 count

> 500 cells/[mm.sup.3] 37.4

200-500 cells/[mm.sup.3] 40.4

< 200 cells/[mm.sup.3] 22.2

Months since HIV

diagnosis 19.8 25.5

Psychosocial characteristics

Major life stress (SRRS),

Frequency past 6 m 6.5 3.4

Social support (ISEL) 106.8 27.4

Escape-avoidance coping

(WOC) 12.4 4.8

Planful problem-solving

(WOC) 9.6 3.9

Depression (CES-D) 24.9 12.5

Anxiety (STAI-state) 43.0 14.0

Note. SRRS = Social Readjustment Rating Scale; ISEL

= Interpersonal Support Evaluation List; WOC = Ways of Coping

questionnaire; CES-D = Center for Epidemiological Studies

Depression Scale; STAI = State-Trait Anxiety Inventory.


Multivariate Predictors of Depression and Anxiety Among Women

Living With HIV

Dependent Multiple

variable Block Variable [Beta]


1 CD4 count -.07

Months HIV diagnosis .03

Education -.05

2 Life stressor frequency .19 *

Social support -.26 **

Escape-avoidance coping .52 ***

Planful problem solving -.29 **

State anxiety

1 CD4 count -.19

Months HIV diagnosis -.24 *

Education .08

2 Life stressor frequency .27 **

Social support -.40 **

Escape-avoidance coping .21

Planful problem solving -.28 *

Dependent Multiple

variable Block Variable R


1 CD4 count

Months HIV diagnosis

Education .26

2 Life stressor frequency

Social support

Escape-avoidance coping

Planful problem solving .68

State anxiety

1 CD4 count

Months HIV diagnosis

Education .39

2 Life stressor frequency

Social support

Escape-avoidance coping

Planful problem solving .66

Dependent Multiple

variable Block Variable [R.sup.2]


1 CD4 count

Months HIV diagnosis

Education .07

2 Life stressor frequency

Social support

Escape-avoidance coping

Planful problem solving .46

State anxiety

1 CD4 count

Months HIV diagnosis

Education .11

2 Life stressor frequency

Social support

Escape-avoidance coping

Planful problem solving .44

Dependent Multiple

variable Block Variable F


1 CD4 count

Months HIV diagnosis

Education 2.13

2 Life stressor frequency

Social support

Escape-avoidance coping

Planful problem solving 10.04 ***

State anxiety

1 CD4 count

Months HIV diagnosis

Education 2.84 *

2 Life stressor frequency

Social support

Escape-avoidance coping

Planful problem solving 6.96 ***

* p < .05; ** p < .01; *** p < .001.


This research was supported by an Institutional Biomedical Research Support Grant (BRSG SO-RR-5376) from the Division of Research Resources, National Institutes of Health, and by Center Grant P30-MH52776 from the National Institute of Mental Health.

We wish to extend our appreciation to Glenn Jones, PhD, Phillip Brantley, PhD, Joseph Prejean, PhD, and the staff and patients of the Earl K. Long Hospital Early Intervention Clinic for their assistance with this project.


For further information, please address communications to Sheryl L. Catz, PhD, assistant professor, Center for AIDS Intervention Research (CAIR), Department of Psychiatry and Behavioral Medicine, Medical College of Wisconsin, 2071 North Summit Avenue, Milwaukee, WI 53202 (e-mail:


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Sheryl L. Catz and Cheryl Gore-Felton are assistant professors with the Center for AIDS Intervention Research (CAIR), Department of Psychiatry and Behavioral Medicine, Medical College of Wisconsin, Milwaukee, and Jennifer B. McClure is an assistant investigator at the Center for Health Studies, Group Health Cooperative, Seattle, Washington.

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