Examining the Health Care Experiences of Women Living with Human Immunodeficiency Virus (HIV) and Perceived HIV-Related Stigma

IntroductionThe increased incidence of human immunodeficiency virus (HIV) in women, particularly marginalized women, prompted research to examine women's health service experiences at a local outpatient clinic.MethodsA qualitative case study using semistructured interviews examined facilitators and barriers to health care services. Seventeen women living with HIV who accessed care at an outpatient HIV clinic in central west Ontario were interviewed. Thematic analysis was used to code health care experiences perceived as HIV-related stigma.ResultsWomen perceived HIV-related stigma when health care providers lacked basic HIV knowledge and failed to uphold the ethical principles of patient–provider relationships, resulting in women's disengagement from health care.ConclusionsWe propose a community-based participatory research framework to reform health care educational curriculum toward a culture of health care safety that is inclusive of people living with HIV.     

HIV Discrimination and the Health of Women Living with HIV

ABSTRACT

Women living with HIV are especially vulnerable to discrimination because of the stigma associated with the disease, as well as their race, gender and class status. To investigate the association between self-reported HIV discrimination and health outcomes among African-American and white women living with HIV, 366 women living with HIV were recruited from HIV/AIDS clinics in Georgia and Alabama. In this cross-sectional study, participants completed an interview that assessed self-reported HIV discrimination and depressive symptomatology, suicidal ideation, self-esteem, stress, quality of life, sexual health and HIV/AIDS related health care seeking. Nearly a sixth of the sample reported experiencing HIV discrimination. Women reporting HIV discrimination had higher mean scores for stress, suicidal ideation, depressive symptoms, number of unprotected sexual episodes; they had lower mean scores for self-esteem, and quality of life, and were more likely to have not sought medical care for HIV/AIDS. In race-specific analyses, none of the relationships between HIV discrimination and health outcomes were significant for white women. African-American women who reported HIV discrimination had higher mean scores for stress, suicidal ideation, depressive symptoms, number of unprotected sexual episodes; they had lower mean scores for self-esteem, and quality of life, and were more likely not to have sought medical care for HIV/AIDS. The findings indicated that HIV discrimination adversely affects women's mental, sexual and physical health. However, separate race-specific analyses indicated that compared to white women, African-American women were markedly more likely to experience the adverse affects of HIV discrimination. Eradication of HIV discrimination remains an important public health priority.     

“They look at you like you’re contaminated”: how HIV-related stigma shapes access to care for incarcerated women living with HIV in a Canadian setting

ObjectivesGiven the gender disparities in HIV outcomes for women living with HIV (WLWH) who experience incarceration, and the impact of HIV-related stigma on HIV care, this qualitative study investigated how HIV-related stigma within prison settings shapes HIV care for WLWH.MethodsDrawing from SHAWNA (Sexual Health and HIV/AIDS: Women’s Longitudinal Needs Assessment), a community-based research project with cisgender and transgender WLWH in Metro Vancouver, peer and community interviewers conducted 19 qualitative interviews (May 2017–February 2018) with recently incarcerated WLWH focused on factors that shape incarceration trajectories. Drawing on socio-ecological frameworks and using participatory analysis, this analysis sought to characterize how HIV-related stigma shapes experiences and access to care for incarcerated WLWH.ResultsParticipants’ responses focused predominately on experiences in provincial correctional facilities and the ways through which HIV-related stigma within correctional settings was linked to access to HIV care. Experiences of HIV-related stigma within prisons led to isolation and discrimination for WLWH which was reinforced through institutional processes, compromised privacy, and uncertainty about confidentiality. Experiences of HIV-related stigma informed decisions for some participants to withhold HIV status from healthcare staff, compromising access to HIV treatment during incarceration.ConclusionAmid ongoing efforts to improve healthcare delivery within Canadian correctional facilities, these findings have important implications for the provision of HIV care for incarcerated WLWH. Culturally safe, trauma-informed programming focused on reducing HIV-related stigma, improved communication regarding medical privacy, and interventions to change processes that compromise privacy is critical to improve healthcare access in correctional facilities.     

“Why are you pregnant? What were you thinking?”: How women navigate experiences of HIV-related stigma in medical settings during pregnancy and birth

Having children is a growing reality for women living with HIV in Canada. It is imperative to understand and respond to women’s unique experiences and psychosocial challenges during pregnancy and as mothers including HIV-related stigma. This qualitative study used a narrative methodological approach to understand women’s experiences of HIV-related stigma as they navigate health services in pregnancy (n = 66) and early postpartum (n = 64). Narratives of women living with HIV expose the spaces where stigmatizing practices emerge as women seek perinatal care and support, as well as highlight the relationship between HIV-related stigma and disclosure, and the impact this has on women’s pregnancy and birthing experiences.     

Intersectional stigma among midlife and older Black women living with HIV

Abstract

HIV-related stigma is a barrier to the prevention and treatment of HIV. For midlife and older Black women, the nature and intensity of HIV-related stigma may be compounded by their multiple marginalised social status based on gender, race, and age. We examined the perceptions and experiences of HIV-related stigma among midlife and older Black women living in Prince George’s County, Maryland, USA. Between 2014 and 2015, we conducted semi-structured interviews with a sample of 35 midlife and older Black women living with HIV. Using a modified grounded theory approach, we explored emergent themes related to the manifestation and experience of intersectional stigma and changes in stigma experience over time. Our findings suggest that intersectional stigma is a central feature in midlife and older Black women’s lives, with women reporting experiences of intersectional stigma at the interpersonal/familial, community, and institutional/structural levels. Although women acknowledged gradual acceptance of their HIV-positive status over time, they continued to experience negative responses related to gender, race, age, and disease. Our findings indicate that a more robust understanding of the impact of HIV-related stigma requires work to consider the complex manifestations of intersectional stigma among an increasingly aging population of Black women in the USA.     

Understanding the Promise: Considering the Experiences of Women Living with HIV to Maximize Effectiveness of HIV Prevention Technologies

BackgroundThe United States' response to HIV was designed primarily to meet the needs of single men without dependent children and its prevention strategies focused primarily on individual behavior change with little attention to the social, cultural, and economic factors fueling HIV risk, especially among indigent and marginalized women. In 2012, the President's Advisory Council called for an updating of the National HIV/AIDS Strategy's Implementation Plan to “achieve specific, targeted and measurable goals for reducing HIV incidence and … improving health care access and health outcomes for women living with HIV.”Outcome MeasuresWomen living with HIV and those at greatest risk of HIV generally live side by side in the same communities and under the same conditions, separated in status only by a positive HIV test and its consequences. Thus, women openly living with HIV constitute an identifiable and accessible source of first-hand information regarding the barriers that keep women out of HIV prevention and care. Their insights, rooted in lived experience, can vitally inform the development of realistic HIV prevention goals and strategies for the successful integration of HIV prevention into the services already accessed by high-risk women. Their expertise, however, is largely untapped.ConclusionsIn this article, women living with HIV summarize the substantial deficits that exist with regard to woman-focused HIV prevention efforts nationally and the policy and practice changes needed to reduce the domestic impact of the HIV epidemic on women and girls. They also outline opportunities for movement in this direction as implementation of the National HIV/AIDS Strategy proceeds.     

Depression and coping strategies among Vietnamese women living with HIV: A qualitative study

ABSTRACT

Women living with HIV (WLWH) are more likely to suffer from depression than seronegative women and are also more likely to suffer from depression than men living with HIV. There is limited depression research with WLWH in Vietnam. Twenty in-depth interviews with WLWH were conducted to identify pathways leading to depression and coping strategies for depression. Participants were recruited from an antiretroviral treatment clinic in northern Vietnam. Audio-recorded interviews were transcribed, translated, and analysed to identify key themes. All participants reported sudden loss of social support, debilitating depression, and suicidal ideation in the first six months after HIV diagnosis. While some were able to cope with their status after several months, others continued to struggle due to HIV-related stigma that was perceived as more isolating for WLWH than for men. Women who were able to effectively cope with depression found ways to re-establish connections to family and community. Interventions to improve mental wellbeing should link WLWH to mental health services immediately after diagnosis and address loss of support and stigma, as they contributed to the onset and persistence of depression after HIV diagnosis. Community-level HIV stigma reduction interventions may also help repair broken social bonds and foster new ones.     

Income Inequality,HIV Stigma,and Preventing HIV Disease Progression in Rural Communities

Antiretroviral therapies (ART) suppress HIV replication, thereby preventing HIV disease progression and potentially preventing HIV transmission. However, there remain significant health disparities among people living with HIV, particularly for women living in impoverished rural areas. A significant contributing factor to HIV-related disparities is a stigma. And yet, the relative contributions of stigma, gender, socio-economics, and geography in relation to health outcomes are understudied. We examined the associations of internalized stigma and enacted stigma with community-level income inequality and HIV viral suppression—the hallmark of successful ART—among 124 men and 74 women receiving care from a publicly funded HIV clinic serving rural areas with high-HIV prevalence in the southeastern US. Participants provided informed consent, completed computerized interviews, and provided access to their medical records. Gini index was collected at the census tract level to estimate community-level income inequality. Individual-level and multilevel models controlled for point distance that patients lived from the clinic and quality of life, and included participant gender as a moderator. We found that for women, income inequality, internalized stigma, and enacted stigma were significantly associated with HIV suppression. For men, there were no significant associations between viral suppression and model variables. The null findings for men are consistent with gender-based health disparities and suggest the need for gender-tailored prevention interventions to improve the health of people living with HIV in rural areas. Results confirm and help to explain previous research on the impact of HIV stigma and income inequality among people living with HIV in rural settings.

     

Cervical Cancer Screening in Ethnocultural Groups: Case Studies in Women-Centered Care

ABSTRACT

Introduction. The purpose of this study was to identify and describe critical elements of women-centered care within the context of providing cervical screening to three ethnocultural groups in Canada: Asian, South Asian and First Nations.

Methods. Data for this collective case study included open-ended interviews with purposive samples of women and key informants from each target group. Following thematic analysis, cross-case analysis was completed by comparing and contrasting issues and contextual factors influencing women's and providers' experiences.

Results. Cervical screening services for each group were shaped by attention to ethnocultural values, women's desire for thorough explanations, and the importance of a comfortable setting. While participation rates varied across clinics, women were positive about their experiences in obtaining cervical screening. Some women's expectations that they could address a range of health concerns with female health providers at the clinics were stymied by structural barriers that prevented staff from addressing issues beyond those directly related to cervical screening. Cross-case analysis revealed three key elements of women-centered care: respectful and culturally appropriate interactions between women and health providers, the importance of providing acceptable alternatives for women, and the need for comprehensive health services.

Conclusion. While the establishment of Pap test clinics for ethnocultural groups has the potential to enhance participation in cervical screening, changes in health policy and the structure of health ser vices are required for existing programs to fully implement the elements of women-centered health care identified in this study. Other models of providing health care to women in ethnocultural groups, including the use of clinics staffed by nurse practitioners, should be evaluated.     

Breaking the Glass Ceiling: Increasing the Meaningful Involvement of Women Living With HIV/AIDS (MIWA) in the Design and Delivery of HIV/AIDS Services

The meaningful involvement of women living with HIV/AIDS (MIWA) is a key feature of women-centred HIV care, yet little is known about transforming MIWA from principle to practice. Drawing on focus group data from the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS), we explored HIV-positive women's meaningful involvement in the design and delivery of HIV/AIDS services in British Columbia, Canada. In this article, we highlight the benefits and tensions that emerge as women traverse multiple roles as service users and service providers within their care communities, and the impact this has on their access to care and overall health.     

Women's experiences with HIV-related stigma from health care providers in Lima,Peru: “I would rather die than go back for care”

In Peru, HIV/AIDS is increasing among heterosexual women. In this qualitative study researchers examined HIV-related stigma among 14 women in Lima, Peru, who were HIV positive and at least 18 years of age. Data were analyzed using thematic analysis and indicated that women experienced stigma from health care providers. Two broad themes emerged from the data: forms of stigma and response to stigma. Within these themes, subthemes included maltreatment during care, neglect of patients' rights to confidentiality and privacy, and the process of women speaking out. Stigma from health care providers had a long-term, negative impact on women's willingness to seek treatment. Future stigma reduction initiatives, on a global level, should include health care workers.     

Women and HIV/AIDS in China: Gender and Vulnerability

A comprehensive literature review was conducted to determine if there was a research gap between women's vulnerability to HIV and research addressing that vulnerability in China. Türmen's article Gender and HIV/AIDS served as a framework for examining the eight determinants placing women and adolescent girls at greater risk of HIV infection than men. Eighty-eight research reports were retrieved and categorized by general characteristics and the eight determinants. Women were found to be more vulnerable than men to HIV infection in China and worldwide. While researchers reported a considerable amount of research regarding women's HIV/AIDS-related issues in China, there is insufficient attention to some risk determinants. Investigators are encouraged to take advantage of political commitment and policy changes in China to conduct more research focusing on female vulnerability and to address the effects of violence, laws, stigma, and discrimination in female HIV prevention.     

Embodied Work: Insider Perspectives on the Work of HIV/AIDS Peer Counselors

Our aim in this study was to explore HIV/AIDS peer counseling from the perspective of women actively engaged in this work within the context of a community-based program in rural areas of the southeastern United States. Based on this research we suggest that the embodied work of HIV/AIDS peer counselors is constructed around their personal identities and experiences. This work involves gaining entry to other HIV-positive women's lives, building relationships, drawing on personal experiences, facing issues of fear and stigma, tailoring peer counseling for diversity, balancing risks and benefits, and terminating relationships. Peer counselors recognize the personal and collective value of their work, which, like much of women's work within the context of family and community, lacks public visibility and acknowledgment. We discuss implications for the training and support of peer-based interventions for HIV and other women's health issues across diverse contexts and settings.     

HIV discrimination and the health of women living with HIV

Women living with HIV are especially vulnerable to discrimination because of the stigma associated with the disease, as well as their race, gender and class status. To investigate the association between self-reported HIV discrimination and health outcomes among African- American and white women living with HIV, 366 women living with HIV were recruited from HIV/AIDS clinics in Georgia and Alabama. In this cross-sectional study, participants completed an interview that assessed self-reported HIV discrimination and depressive symptomatology, suicidal ideation, self-esteem, stress, quality of life, sexual health and HIV/AIDS related health care seeking. Nearly a sixth of the sample reported experiencing HIV discrimination. Women reporting HIV discrimination had higher mean scores for stress, suicidal ideation, depressive symptoms, number of unprotected sexual episodes; they had lower mean scores for self-esteem, and quality of life, and were more likely to have not sought medical care for HIV/AIDS. In race-specific analyses, none of the relationships between HIV discrimination and health outcomes were significant for white women. African-American women who reported HIV discrimination had higher mean scores for stress, suicidal ideation, depressive symptoms, number of unprotected sexual episodes; they had lower mean scores for self-esteem, and quality of life, and were more likely not to have sought medical care for HIV/AIDS. The findings indicated that HIV discrimination adversely affects women's mental, sexual and physical health. However, separate race-specific analyses indicated that compared to white women, African-American women were markedly more likely to experience the adverse affects of HIV discrimination. Eradication of HIV discrimination remains an important public health priority.     

Contemplating abortion: HIV-positive women's decision to terminate pregnancy

Research on pregnancy termination largely assumes HIV status is the only reason why HIV-positive women contemplate abortion. As antiretroviral treatment (ART) becomes increasingly available and women are living longer, healthier lives, the time has come to consider the influence of other factors on HIV-positive women's reproductive decision-making. Because ART has been free and universally available to Brazilians for more than two decades, Brazil provides a unique context in which to explore these issues. A total of 25 semi-structured interviews exploring women's pregnancy termination decision-making were conducted with women receiving care at the Reference Centre for HIV/AIDS in Salvador, Brazil. Interviews were transcribed, translated into English and coded for analysis. HIV played different roles in women's decision-making. In all, 13 HIV-positive women did not consider terminating their pregnancy. Influential factors described by those who did consider terminating their pregnancy included fear of HIV transmission, fear of HIV-related stigma, family size, economic constraints, partner and provider influence, as well as lack of access to pregnancy termination services and abortifacients. For some HIV-positive women in Brazil, HIV can be the only reason to consider terminating a pregnancy, but other factors are significant. A thorough understanding of all variables affecting reproductive decision-making is necessary for enhancing services and policies and better meeting the needs and rights of HIV-positive women.     

Silence Is Not Golden: Invisible Latinas Living with HIV in the Midwest

This qualitative study was conducted to better understand the health needs and concerns of immigrant HIV-infected Latinas residing in the Midwest United States. Individual interviews (n = 18) were conducted in Spanish with Latinas in Kansas, Oklahoma and Missouri. Women were at different stages of acceptance about their HIV diagnosis and four common themes emerged from the data: pregnancy as a death sentence, HIV is taboo, God as their only resource, and living in isolation. Silence was an over-arching theme present throughout all the narratives and many women had never shared their stories about HIV with anyone. Depressive symptoms and suicidal ideation were common. These findings have implications for strategies to address the HIV prevention and HIV-related healthcare needs of this population of women. Results from this study further suggest that efforts are needed to break the silence surrounding HIV and to reduce HIV-related stigma in smaller Midwestern Hispanic communities.     

Health-related quality-of-life and receipt of women-centered HIV care among women living with HIV in Canada

ABSTRACT

We measured health-related quality of life (HRQOL) using the SF-12 among women living with HIV (WLWH) in Canada between August 2013 and May 2015. We investigated differences by perceived receipt of women-centered HIV care (WCHC), assessed using an evidence-based definition with a 5-point Likert item: “Overall, I think that the care I have received from my HIV clinic in the last year has been women-centered” (dichotomized into agree vs. disagree/neutral). Of 1308 participants, 26.3 percent were from British Columbia, 48.2 percent from Ontario, and 25.5 percent from Québec. The median age was 43 years (interquartile range = 36–51). Most (42.2 percent) were White, 29.4 percent African/Caribbean/Black, and 21.0 percent Indigenous. Overall, 53.4 percent perceived having received WCHC. Mean physical and mental HRQOL scores were 43.8 (standard deviation [SD] = 14.4) and 41.7 (SD = 14.2), respectively. Women perceiving having received WCHC had higher mean physical (44.7; SD = 14.0) and mental (43.7; SD = 14.1) HRQOL scores than those not perceiving having received WCHC (42.9; SD = 14.8 and 39.5; SD = 14.0, respectively; p < .001). In multivariable linear regression, perceived WCHC was associated with higher mental (β = 3.48; 95 percent confidence interval: 1.90, 5.06) but not physical HRQOL. Improving HRQOL among Canadian WLWH, which was lower than general population estimates, is needed, including examining the potential of WCHC as an effective model of clinical care.     

La vida normal: living with HIV in Santo Domingo,Dominican Republic

In this study, we explore how individuals living with HIV in the Dominican Republic strive to live a ‘normal’ life and the consequences of this pursuit of normalcy. We conducted qualitative in-depth interviews with men (n = 20) and women (n = 20) living with HIV and receiving care at two urban clinics in Santo Domingo. We analysed the data using a combination of narrative analysis and thematic coding. We aimed to identify how fears and/or lived experiences with social rejection and HIV-related stigma and discrimination shaped participants’ abilities to maintain social relationships, be economically productive and manage HIV within the context of sexual relationships. Participants used the discourse of una vida normal (a normal life) to frame their response to HIV. This pursuit of normality was driven by the social and economic pressures of living with a chronic condition in a context of HIV-related stigma; trying to keep things ‘normal’ further added to these pressures. We argue that the normal life discourse fails to recognise the dynamic and complex nature of negotiating this condition and may also create additional burdens for individuals living with HIV that could impact their wellbeing and preventive behaviours.