Disclosure of HIV infection: how do women decide to tell?

This descriptive study explores the phenomenon of disclosure of HIV infection by women. Specifically, we examined women's level of disclosure to various groups and how these disclosure decisions are made. The sample consisted of 322 HIV-infected women residing in the southern US. Participants were predominantly African-American, single women of reproductive age with yearly incomes less than $10,000. Data were collected at the first interview of a longitudinal study of reproductive decision making. Findings showed that the majority of the women had disclosed to some sex partners, close family and friends, and health care professionals. However, for a group of women, disclosure of HIV infection is a difficult issue supporting the need for health education and counseling. Qualitative data were analyzed using content analysis and revealed three major categories describing how women make disclosure decisions: full disclosure, criteria for disclosure and emotional disclosure. Quantitative analysis revealed few demographic differences among women in the three disclosure categories. These findings provide insight that can assist those working with HIV-infected women in helping them decide not only to whom they disclose, but how best to disclose.

A qualitative assessment of condom use decisions by female adolescents who use hormonal contraception.

Young women who use hormonal contraception are at increased risk of HIV. This study, based on the Health Belief Model, was designed to understand how adolescent women who use hormonal contraceptives make decisions about condom use. Thirty-nine young, minority women participated in open-ended interviews. The interviews were transcribed and analyzed by both authors separately. The results suggest that barriers to condom use include use of a hormonal method of contraception, perceived trust in a partner, and a perception of the condom as "irritating." Facilitators for condom use included not being with a steady partner and fear of pregnancy and infection. The young women also suggested that being able to talk to their parents about condom use, having condoms widely available, and seeing HIV-prevention messages in many venues would increase their use of condoms. They noted that seeing young, HIV-positive women demographically similar to themselves would also prompt them to use condoms. Nurses should incorporate these factors into HIV-prevention interventions for adolescents.

HIV-infected women's experiences and beliefs related to AZT therapy during pregnancy.

To explore women's experiences and beliefs concerning zidovudine (AZT) therapy during pregnancy, short-answer and open-ended questions were asked of 322 human immunodeficiency virus (HIV)-infected women at increased risk for pregnancy. Specifically, we examined what women believed they had been told concerning AZT therapy during pregnancy by health care professionals and peers, experiences with taking AZT, how effective they believed AZT therapy to be, and if they would take AZT if they became pregnant. Women in the study were predominately African American (88%), single (79%), with a mean age of 32 years, and had annual incomes less than $10,000 (64%). Although 81.4% of the women had been told to take antiretrovirals, only 69.1% of the women were actually taking HIV-related medicines. Almost three-fourths of the women (70.8%) reported being told that taking AZT during pregnancy would reduce perinatal transmission. Women reported the most frequent reason for their stopping AZT was its side effects. When women who were not presently taking AZT were asked what would make them consider taking it, they most frequently said they would begin AZT if their health deteriorated or based on the advice of health care professionals. A small group of women said nothing would make them take AZT-type medications. More than one-half of the women said they felt AZT was effective in preventing perinatal HIV transmission. However, almost 20% of the women reported believing that their health care provider would not be positive about their taking AZT during pregnancy. Significant relationships were found between intent to take AZT if becoming pregnant and specific AZT-related beliefs and experiences.

Social service and case management needs of HIV-infected persons upon release from prison/jail.

This study sought to identify social service needs of HIV-infected persons at the time of release from prison/jail and to describe their case management experiences after release from prison/jail. Sixteen men and women who were infected with HIV, each with a history of incarceration, participated in one of three focus group sessions. Study participants consisted of 11 men and five women. The majority of the participants were African-American (81%), single (50%), and currently unemployed (69%). Qualitative analysis of the focus group transcripts revealed a total of 483 comments regarding a need for social or health services. These comments were further grouped into 13 categories of services or service-related issues that represented the range of the responses. Although participants described positive experiences with specific case managers, their overall evaluation of case management was negative. Identified social services needs and the descriptions of their experiences with case management provides insight as to how case management services can be improved for this population.

Partner violence, partner notification, and women's decisions to have an HIV test.

OBJECTIVES: Reports of partner violence against HIV-positive women after they have disclosed their serostatus have led some to reassess partner notification strategies and to speculate that fear of partner violence following partner notification may influence women's HIV testing decisions. We studied whether associations exist between women's declining to have an HIV test and history of partner violence, fear of partner violence, previous experience with partner notification, or beliefs about partner notification. METHODS: In this cross-sectional study, we interviewed women seen at Newark and Miami sexually transmitted disease clinics. The women were at least 18 years old, not known to be HIV positive, not tested for HIV in the previous 3 months, and offered HIV testing during the clinic visit. Women who declined testing were compared with women who accepted. RESULTS: Of 490 participants (89% of eligible women), 16% reported partner violence in the past year, and 28% declined HIV testing. Declining the test was not significantly (p >.05) associated with history or fear of partner violence, previous experience with partner notification, or beliefs about partner notification. When specifically asked, only 2 women responded that their declining the test was related to fear that their partner or partners might harm them if the women tested positive. CONCLUSIONS: Among women seen at these clinics, we did not find evidence that declining the HIV test was strongly influenced by partner violence, previous experience with partner notification, or beliefs about partner notification. However, many women reported partner violence. Therefore, providers should assess the potential for partner violence and be prepared to make appropriate referrals.

Increasing condom use among adolescents with coalition-based social marketing.

OBJECTIVES: This study evaluated a multimodal social marketing intervention to reduce the sexual transmission of HIV infection among adolescents in Sacramento, California, USA. DESIGN: Five rounds of a cross-sectional random sample telephone survey were conducted from December 1996 to October 1998. The total number of respondents was 1402. RESULTS: A statistically significant, increasing trend in exposure to the intervention was detected. The number of channels through which an adolescent had been exposed to the intervention was associated with condom use at last sex with main partner [odds ratio (OR) 1.26, P < 0.01] and with psychosocial determinants of this behavior. After statistical adjustments for sex, age, and race/ethnicity to make the survey rounds comparable, the proportion of adolescents who had used a condom at last sex increased 4.3 percentage points over the 1 year intervention period. CONCLUSION: Social marketing can be combined with behavioral science to reduce the risk of HIV infection and other sexually transmitted diseases (STD) among adolescents in a large geographical area. Such a reduction can exceed expectations based on national secular trends.

Depressive symptoms among African American women with HIV disease.

Depressive symptoms are a common response to HIV disease and evidence suggests that women may be at particular risk. Very little of the research on depressive symptoms within the context of HIV disease has included women, however, and even fewer studies have targeted African American women. In a beginning effort to address this gap, the authors performed a secondary analysis of data collected from 1992-1995 in a sample of 264 HIV+ women. The purpose of the secondary analysis was to describe the levels of depressive symptoms for a subsample of 152 African American subjects and to identify significant covariates. The original analysis was based on a stress and coping framework and was designed to provide a description of stressors, resistance factors, and adaptational outcomes of HIV+ women. It included various measures of psychological distress and quality of life. Depressive symptoms were not examined in the original analysis as an outcome of HIV disease, however. In the secondary analysis, depressive symptoms were operationalized using a depression subscale of the Brief Symptom Inventory (BSI) (Deragotis, 1993). Major categories of correlates examined included person resources, environmental resources, coping responses, and disease-related stressors. The data used in the analysis were collected during the fourth and fifth interviews of the longitudinal study, with 152 of the African American women having completed both interviews. Variance in depressive symptoms was analyzed using ANOVA, zero-order correlations, and multiple regression analysis. The mean depressive symptoms score for the subsample of African American women was considerably higher than published means for female and male normative samples, respectively. The regression model accounted for over half of the variance in depressive symptoms (R2 = .515). Significant correlates included self-esteem, family cohesion, HIV symptoms and quality of life. The findings support personal and social resources and disease-related factors as important correlates of HIV+ African American women's depressive symptoms and suggest the need for interventions to address such factors.

Spiritual activities as a resistance resource for women with human immunodeficiency virus.

BACKGROUND: Few studies have investigated the role that spiritual activities play in the adaptational outcomes of women with human immunodeficiency virus (HIV) disease. OBJECTIVE: To examine the role of spiritual activities as a resource that may reduce the negative effects of disease-related stressors on the adaptational outcomes in HIV-infected women. METHODS: A theoretically based causal model was tested to examine the role of spiritual activities as a moderator of the impact of HIV-related stressors (functional impairment, work impairment, and HIV-related symptoms) on two stress-related adaptational outcomes (emotional distress and quality of life), using a clinic-based sample of 184 HIV-positive women. RESULTS: Findings indicated that as spiritual activities increased, emotional distress decreased even when adjustments were made for HIV-related stressors. A positive relationship between spiritual activities and quality of life was found, which approached significance. Findings showed that HIV-related stressors have a significant negative effect on both emotional distress and quality of life. CONCLUSIONS: The findings support the hypothesis that spiritual activities are an important psychological resource accounting for individual variability in adjustment to the stressors associated with HIV disease.

Lessons learned from the PMI case study: the community perspective.

PIP: This summary report presents the lessons learned during the two-part qualitative case study on the efficacy of the Prevention Marketing Initiative (PMI) in its implementation of an HIV prevention program. About 179 community participants were included in the PMI program, which discussed topics ranging from organizing initial planning committees to financially sustaining federal demonstration programs. One of the successes observed was the development of rapport with schools and churches; however, during the course of its implementation, the program realized the necessity of 1) approaching the program as an ongoing process; 2) going beyond studying the target population through formative research; 3) changing the role of a community coalition as the project matures; 4) reexamining the composition of coalition in the light of the target audience; 5) advocating the project as a community resource that promotes collaboration; 6) attending the needs of coalition members; and 7) using the media in the campaign. Likewise, several lessons were also learned in the areas of youth involvement, intervention development, program implementation, and maintenance of PMI activities.^ieng

Experiences of violence in HIV-seropositive women in the south-eastern United States of America.

Women represent one of the fastest growing groups being diagnosed with HIV infection. Because of the circumstances under which they live, women at the highest risk for HIV infection may also be at risk for verbal, physical and sexual violence. The purpose of this study was to examine the frequency and type of violence experienced by women infected with HIV, and describe associations between reported violence, self-esteem and sense of competence. The study used a descriptive design and was conducted in the south-eastern United States. The sample consisted of 194 women infected with HIV. Women were primarily single, African-Americans residing in urban areas with an annual household income of less than $10,000 per year. Participants completed face-to-face interviews using a structured questionnaire which included a frequency of violence scale, Rosenberg's self-esteem scale, and Pearlin and Schooler's mastery scale. Approximately 15% of women reported at least one event of physical abuse and 55% at least one event of verbal abuse in the past 6 months. Verbal abuse experienced by women was the strongest net negative predictor of self-esteem and competence. These findings indicate that HIV-infected women are at risk for experiencing physical abuse and verbal abuse, and the experience of violence is associated with lower self-esteem and competence.

The effectiveness of coping strategies used by HIV-seropositive women.

The effectiveness of active and passive coping strategies was examined in a sample of 264 women infected with HIV. Coping was measured concurrent with, and 3 months prior to, measurement of physical symptoms and emotional distress. Two causal models were tested: one for active coping and one for passive coping. Active coping strategies examined included seeking social support, managing the illness, and spiritual activities. Avoidance was used as an indicator of passive coping. In both models, physical symptoms and emotional distress were positively and significantly related. The findings indicated that, whereas current avoidance coping was not related to emotional distress, current active coping was positively related to physical symptoms and negatively related to emotional distress. The immediate effects of active coping appeared to serve a protective function in that emotional distress decreased with greater use of active coping, even as physical symptoms increased. Avoidance coping had no such protective effect for emotional distress. In addition, the use of avoidance coping decreased and active coping increased as physical symptoms increased, suggesting that active coping is more likely to be used with increasing levels of physical symptoms. The findings suggest that interventions that support attempts to use active coping strategies as physical symptoms increase may be effective in promoting positive adaptation to HIV disease.

Quality of life in HIV-infected women in the south-eastern United States.

The purpose of this study was to evaluate the relative importance of social (social support, material resources, disclosure, and family functioning) and psychological factors (stigma, emotional distress, intrusion, avoidance, and fatalism) as predictors of the quality of life of women infected with HIV. The cross-sectional data were drawn from interviews of a sample of 264 women recruited from 8 HIV/AIDS treatment sites in a south-eastern state. Variance in quality of life variables, included limited daily functioning, general anxiety, and HIV symptoms was analyzed using ANOVA, correlations, and hierarchical multiple regression analysis. Limited daily functioning was predicted by stigma, fatalism, employment status, and stage of disease (R2 = 0.179). General anxiety was predicted by emotional distress, intrusion, and marital status (R2 = 0.503). Reported HIV symptoms were predicted by material resources, disclosure, intrusion, age, employment status, and race (R2 = 0.294). The results of this study support that social and, particularly, psychological factors are important in their influence on quality of life in women with HIV infection and suggest the need for interventions which address such factors.

Resources, stigma, and patterns of disclosure in rural women with HIV infection.

A growing number of cases of HIV infection are being diagnosed in rural communities especially among women. Although HIV-specific education and care delivery programs have been focused on rural areas in recent years, limited data are available on the impact of such initiatives on the lives of women with HIV infection. The purpose of this study was to examine characteristics of women with HIV disease living in rural communities. The study used a cross-sectional sample of rural women in Georgia. Data analysis indicated that although a majority of the women reported adequate resources, there was a group of women for whom resources for basic needs were not always adequate. Additionally, women with HIV who had not progressed to AIDS had greater difficulty in obtaining a number of resources. Almost half of the women felt stigmatized due to having HIV. Yet, a high percentage of these women had disclosed their HIV status to health care workers, sexual partners, and family. Study results provide insight into the needs of HIV-infected rural women from their perspective. This information can be important to nurses working in public health and community settings as they face the challenge of developing effective health care services for this population.

An exploration of the meaning and use of spirituality among women with HIV/AIDS.

Disease progression and the onset of AIDS slowly strip away the human form and dignity. As the physical body succumbs to the disease, those with HIV/AIDS search for meaning in life as they seek ways to prolong survival. The purpose of this study was to explore the meaning and use of spirituality in women infected with HIV/AIDS. Data were generated through the use of focus group methodology in eight sessions. The sample was composed of 45 women, aged 20 to 63, of whom 12 were white and 33 were black. Focus group sessions generated 76 descriptions of spirituality and six major themes: relationship with a supreme being, prayer and meditation, healing, peace, love, and religiosity. The acceptance of spirituality as a component of health and quality of life requires a shift in perspective that may allow for the development of new treatment and care strategies that are meaningful to those whose conditions are presently incurable.

The impact of HIV on emotional distress of infected women: cognitive appraisal and coping as mediators.

This study examined the role of psychological factors as mediators of the impact of HIV-related stressors on emotional distress of a clinic-based sample of 264 HIV+ women. Based upon Lazarus and colleagues' cognitively oriented theory of stress and coping, causal modeling was used to test for mediating effects of cognitive appraisal (intrusive thoughts and perceived stigma) and coping variables (avoidance and fatalism) on emotional distress within the context of HIV-related stressors (functional impairment and work performance impairment). The findings supported the mediating effects of cognitive appraisal but not of the coping variables. Consistent with theory, the effect of HIV-related stressors on emotional distress was indirect through cognitive appraisal; however, there were no significant direct effects of HIV-related stressors, fatalism or avoidance on emotional distress. The causal model accounted for significant portions of variance in emotional distress (R2 = .49) and the model fit, as a whole, was more than adequate. The findings indicate that how HIV+ women think about HIV-related stressors is an important factor that may account for individual variability in the ability to maintain a sense of subjective well-being in the face of a devastating fatal disease.

Self-care activities of women infected with human immunodeficiency virus.

The article describes a qualitative focus group study exploring the self-care activities undertaken by women testing positive for human immunodeficiency virus (HIV) to promote and maintain their health. The sample included 27 women who participated in one of four focus group sessions. Participants represented women from both rural and urban settings in the South. Subjects talked about and described the ways in which they took care of themselves. Content analysis was used to code the data and to determine major categories of activities. Seven categories were identified: special dietary and nutrition practices, choosing not to use medically prescribed therapies, spiritual reliance and rituals, staying active, cognitive strategies, self-education, and adopting healthy life styles. These findings support the value of developing a holistic approach to health care of women infected with HIV.

Barriers to health-seeking behaviors for women infected with HIV.

There is a growing need to develop services for women with human immunodeficiency virus (HIV) infection, despite the reluctance of many to seek help. Yet, there is limited knowledge of the forces that act as barriers to health-seeking behaviors among these women. In the analysis of this focus group study of 46 women with HIV, eight distinct categories of perceived barriers to care were identified. These were: Lack of knowledge on the part of health care providers, fear of negative treatment, insensitivity of health care providers, fear by providers, lack of patient education, lack of confidentiality, lack of honesty, and blaming the victim. The women's descriptions of their experiences with health care providers are presented and discussed in the context of the potential impact of such behaviors on women's willingness to accept or continue treatment for HIV infection.

Perceptions of stigma in women infected with HIV.

This qualitative focus group study explored perceptions of stigma in HIV-seropositive women. The sample included 19 HIV-positive women who participated in one of four focus group sessions. Participants were asked to talk about and describe their perceptions of how others think about and respond to them and other HIV-infected individuals. Content analysis was used to code the data and identify participant perceptions. Four themes representing distinctly different perceptions of stigma were identified: distancing, overgeneralizing stereotypes, social discomfort, and pity. The implications of the findings for intervention and future research are discussed.

Experiences of disclosure in women infected with HIV.

In this qualitative focus group study, we explored issues of disclosure for women infected with HIV. The sample included 19 women who participated in one of four focus group sessions. Participants talked about and described their experiences sharing information about their HIV infection with others. Content analysis was used to code the data and identify major issues. Participants uniformly expressed concern about disclosing their HIV status because they expected and feared negative responses from others. Descriptions of disclosure revealed an evaluative process involving an analysis of potential risks and benefits. Three themes that represent concerns about disclosure were identified: discrimination, confidentiality, and the context of disclosure. Based on the findings, we concluded that these concerns are important factors influencing disclosure decisions and the use of supportive services and resources. The findings have implications for designing interventions to assist women in coping with the diagnosis of HIV and to promote their quality of life.