“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.     

Stigma,social reciprocity and exclusion of HIV/AIDS patients with illicit drug histories: A study of Thai nurses' attitudes

Background  

Stigma is a key barrier for the delivery of care to patients living with HIV/AIDS (PLWHA). In the Asia region, the HIV/AIDS epidemic has disproportionately affected socially marginalised groups, in particular, injecting drug users. The effect of the stigmatising attitudes towards injecting drug users on perceptions of PLWHA within the health care contexts has not been thoroughly explored, and typically neglected in terms of stigma intervention.     

Experiences of Stigmatization and Discrimination in Accessing Health Services: Voices of Persons Living With HIV in Ghana

Drawing on Earnshaw and Chaudoir’s HIV stigma framework, this study explored the experiences of persons living with HIV and AIDS regarding stigmatization and discrimination in accessing health services. Using a qualitative research methodology, 42 participants were purposively recruited during support group meetings of persons living with HIV and AIDS (PLWHA) at Amasaman in Accra, Ghana. Four focus group discussions (n = 22) and 10 in-depth interviews were conducted. Discussions and interviews were audio-taped, transcribed, and categorized based on the objectives of the study. The findings indicated that PLWHAs had knowledge of stigma that was experienced through enacted, anticipated, and internalized stigma mechanisms. Evidence showed that PLWHA did not experience stigma and discrimination when they accessed services at the Korle-Bu Teaching Hospital, the largest hospital in Ghana. However, the situation was different when they accessed services at other public health facilities. Based on the findings, implications are discussed for policy, social work, and public health practices.     

Prevalence and predictors of HIV-related stigma among institutional- and community-based caregivers of orphans and vulnerable children living in five less-wealthy countries

Background  

In the face of the HIV/AIDS epidemic that has contributed to the dramatic increase in orphans and abandoned children (OAC) worldwide, caregiver attitudes about HIV, and HIV-related stigma, are two attributes that may affect caregiving. Little research has considered the relationship between caregiver attributes and caregiver-reported HIV-related stigma. In light of the paucity of this literature, this paper will describe HIV-related stigma among caregivers of OAC in five less wealthy nations.     

Conditions of experienced stigma in people living with HIV in Iran: a qualitative comparative analysis

Stigma against people living with HIV (PLWH) seriously affects their quality of life. Moreover it can lead them to hide their HIV status from others, which in turn endangers public health. Many studies dealing with HIV-related stigma focus on the consequences of this phenomenon and pay less attention to the social conditions which affect different types of HIV-related stigma (anticipated, internalized and enacted stigma [ES]). Therefore, in this study, we tried to achieve more understanding about effective causal conditions of various types of experienced stigma. First of all, data were collected from 19 PLWH, using semi-structured interviews from those who had visited the Counseling Center for Behavioral Diseases in Mashhad. Secondly, the data were analyzed by applying a mixture of two methods: thematic analysis and qualitative comparative analysis (Boolean Algebra). The analysis of the data reveals that a combination of informing family members about HIV status, lack of family support, and medical support lead to anticipated stigma; a combination of religious beliefs and poor self-esteem results in internalized stigma and a combination of lack of family support, mistreatment by community, poor self-esteem, poverty and no religious beliefs lead to ES.     

艾滋病扩大治疗策略下未治疗者的心理健康研究

目的 了解在新的治疗策略扩大之际，广州市尚未开始抗病毒治疗的艾滋病病毒（human immunodeficiency virus，HIV）阳性者的抑郁症和焦虑症现状，并按感染时间分层分析社会支持、社会歧视和自我歧视对其的影响作用。方法 在广州市六个区对尚未开始抗病毒治疗的HIV阳性者进行横断面调查，收集调查对象的社会人口学特征，HIV相关健康状况，抑郁，焦虑，从外界领悟的社会支持、社会歧视及自我歧视情况信息，以抑郁和焦虑分别做因变量，其他信息做自变量进行二分类Logistic回归分析。结果 452名调查对象中，66.2%（299/452）和52.9%（239/452）的阳性者分别被评定为抑郁和焦虑。多因素分析结果显示，在感染时间<1个月的阳性者中，家庭支持（OR=0.80，95%CI:0.63~1.00，P=0.049）与自我歧视（OR=2.15，95%CI:1.36~2.44，P=0.001）会影响抑郁，重要他人支持（OR=0.68，95%CI:0.53~0.87，P=0.003）和自我歧视（OR=2.31，95%CI:1.55~3.43，P<0.001）会影响焦虑；在感染时间 ≥ 1个月的阳性者中，自我歧视（OR=2.72，95%CI:1.74~4.25，P<0.001）会影响焦虑。结论 广州市的HIV阳性者存在较高的抑郁和焦虑患病率，自我歧视是影响焦虑和抑郁发生的重要因素，不同来源支持对不同感染时间的HIV阳性者的抑郁和焦虑的影响作用不同，故应针对性地提供社会支持。     

Disclosure of parental HIV/AIDS to children in rural China

Abstract

The purpose of this study is to examine the complex issue of disclosure of parental HIV/AIDS to children in rural China. Semi-structured interviews were conducted with children affected by HIV/AIDS aged 8–17 (n?=?16), their caregivers (n?=?16) and key informants in the community (n?=?5). Findings showed that most children were shielded from knowing the HIV/AIDS status of their parents, although many children may have drawn their own conclusions through observation or sources outside the family. Caregivers felt discouraged and hesitated to discuss parental HIV/AIDS with children due to societal stigma and lack of knowledge and skills. Interventions are needed to improve caregivers' skills to communicate about HIV/AIDS with children. Interventions are also needed to reduce the stigma and discrimination towards people living with HIV/AIDS and their families.     

Response of religious groups to HIV/AIDS as a sexually transmitted infection in Trinidad

Background  

HIV/AIDS-related stigma and discrimination are significant determinants of HIV transmission in the Caribbean island nation of Trinidad and Tobago (T&T), where the adult HIV/AIDS prevalence is 2.5%. T&T is a spiritually-aware society and over 104 religious groups are represented. This religious diversity creates a complex social environment for the transmission of a sexually transmitted infection like HIV/AIDS. Religious leaders are esteemed in T&T's society and may use their position and frequent interactions with the public to promote HIV/AIDS awareness, fight stigma and discrimination, and exercise compassion for people living with HIV/AIDS (PWHA). Some religious groups have initiated HIV/AIDS education programs within their membership, but previous studies suggest that HIV/AIDS remains a stigmatized infection in many religious organizations. The present study investigates how the perception of HIV/AIDS as a sexually transmitted infection impacts religious representatives' incentives to respond to HIV/AIDS in their congregations and communities. In correlation, the study explores how the experiences of PWHA in religious gatherings impact healing and coping with HIV/AIDS.     

Prevalence and factors associated with HIV/AIDS-related stigma and discriminatory attitudes: A cross-sectional nationwide study

ObjectiveThe prime purpose of this study is to assess HIV/AIDS-related self-stigma and discrimination (S&D) attitudes and associated factors using multivariate analysis of data from the 2010–11 National Survey of Understanding the Root of HIV/AIDS Related Stigma and Discrimination.MethodA national telephone survey was carried out with 2271 of the Malaysian public aged 18–60 years. The sample was contacted by random digit dialing covering the whole of Peninsular Malaysia from December 2010 to May 2011. The HIV-transmission knowledge, HIV-related self-stigma, and public stigma were investigated.ResultsDespite high level of HIV-transmission knowledge [mean (SD) = 10.56 (2.42), mean score at 70th percentile] the respondents in this study had moderate levels (mean scores near midpoints) of self-stigma and public stigma attitudes. HIV-transmission knowledge score was not significantly correlated with self-stigma score, but showed a significantly small positive effect (r < 0.2) for public stigma scores. Ethnicity is the strongest correlate of HIV-transmission knowledge, self-stigma, and public stigma attitudes in the multivariate analyses. Other significant correlates were age, socioeconomic group, and urban–rural setting.ConclusionsThe root causes of HIV stigma and discriminatory attitudes were not associated with knowledge deficiency. Interventions should be oriented towards promoting de-stigmatization of HIV/AIDS, and tailored socio-culturally.     

Beyond internalised stigma: daily moralities and subjectivity among self-identified kothis in Karnataka,South India

The Bill and Melinda Gates Foundation has poured a tremendous amount of resources into epidemic prevention in India's high HIV prevalence zones, through their Avahan initiative. These community-centred programmes operate under the assumption that fostering community-based organisational development and empowering the community to take charge of HIV prevention and education will help to transform the wider social inequalities that inhibit access to health services. Focusing on the South Indian state of Karnataka, this paper explores a troubling set of local narratives that, we contend, hold broader implications for future programme planning and implementation. Although confronting stigma and discrimination has become a hallmark in community mobilisation discourse, communities of self-identified kothis (feminine men) who were involved in Avahan programme activities continued to articulate highly negative attitudes about their own sexualities in relation to various spheres of social life. Rather than framing an understanding of these narratives in psychological terms of ‘internalized stigma’, we draw upon medical anthropological approaches to the study of stigma that emphasise how social, cultural and moral processes create stigmatising conditions in the everyday lives of people. The way stigma continues to manifest itself in the self-perceptions of participants points to an area that warrants critical public health attention.     

降低医疗保健服务中HIV/AIDS相关歧视研究:背景、问题及研究框架

医疗保健领域中艾滋相关偏见与歧视问题已得到国际社会及众多艾滋病防治领域工作者的广泛关注。在欧洲联盟资助下,设计并实施了一个为期1年的行动性研究以探索如何降低医疗保健领域的偏见与歧视。本文回顾了偏见与歧视的概念以及UNAIDS提出的医疗保健领域艾滋相关歧视的主要表现形式,提出了本研究中的偏见与歧视的操作定义及范畴,并给出了本研究的背景及框架。     

“HIV is not an easily acceptable disease”: the role of HIV-related stigma in obtaining cervical cancer screening in India

Women living with HIV (WLWH) are at high risk for cervical cancer (CC); however, many WLWH in India do not obtain regular CC screening. Little is known about facilitators and barriers of CC screening in this population. This qualitative study examined the relation of HIV-related stigma to obtaining CC screening among women in Surat, India. Semi-structured individual in-depth interviews were conducted between April 2015 and July 2015 with 25 WLWH at the New Civil Hospital Anti-Retroviral Centre and 15 stakeholders providing health care to WLWH. HIV-related stigma emerged as a considerable barrier to gynecologic care and CC screening among WLWH. Two major subthemes were identified: (1) perceptions of HIV-related normative stigma and enacted discrimination; and (2) HIV status disclosure in the context of health care and CC screening. Stakeholders described a general awareness of HIV-related stigma as a barrier to care for WLWH, while WLWH focused on experiences of enacted discrimination. Both patients and stakeholders described that concerns about disclosure and fear of stigma hinder WLWH in India from obtaining health care and CC screening. Findings suggest that interventions to increase cancer screening among WLWH in India should address the role of HIV-related stigma to be maximally effective.     

"Once I begin to participate, people will run away from me": understanding stigma as a barrier to HIV vaccine research participation in Kenya

Purpose

Participation of volunteers in clinical research is essential to the development of effective HIV prevention methods, including an HIV vaccine. This study expands current knowledge of stigma and discrimination related to participation in HIV vaccine research in sub-Saharan Africa by exploring the perception of stigma and discrimination as a barrier to participation in HIV vaccine research in Kenya.

Methods

Eighteen focus groups with a total of 133 participants and 82 individual interviews were conducted with a range of respondents at two centers in Nairobi, Kenya: a preventive AIDS vaccine trial center; and a preparatory clinical and epidemiological study center. Respondents included peer leaders, community advisory board members, former and current volunteers in clinical research, study staff, community leaders and community members. Data were analyzed using an iterative coding process.

Results

Four prominent stigma-related barriers to participation emerged among all respondent groups, across both centers: (1) volunteers are often assumed by family and community members to be HIV positive because of their participation in vaccine research; (2) HIV-related stigma is perceived as pervasive and damaging in the communities where volunteers live, thus they fear consequent stigma if people believe them to be HIV positive; (3) potential volunteers fear being tested for HIV, a prerequisite for participation, because of possible disclosure of HIV status in communities with high perceived HIV-related stigma; and (4) volunteers must carefully manage information about their participation because of misperceptions and assumptions about vaccine research volunteers.

Conclusions

HIV-related stigma and discrimination influence people's decisions to join HIV-vaccine related research. Findings underscore a need for integration of stigma-reduction programming into education and outreach activities for volunteers, and the communities in which they live. This is particularly critical for trials recruiting individuals with higher HIV risk, who are often already highly stigmatized.     

某地既往有偿供血人群艾滋病歧视状况研究

目的 了解因既往有偿供血造成艾滋病流行地区艾滋病歧视现象及其产生原因和影响因素.方法 在安徽省某地利用目的抽样法从人类免疫缺陷病毒(HIV)感染者、家庭成员、村民及卫生工作者中各选择20名共80名作为调查对象.采用一对一深入访谈的方法,了解艾滋病歧视现象,分析产生原因与影响因素.结果 80名调查对象中,1名未完成调查,在完成调查的79名中,歧视的主要表现形式是扩大的歧视[81.0%(64/79)],嫌弃、回避及抛弁,看病时受到歧视[47.4%(28/59)],失去社会支持[33.3%(13/39)]等.艾滋病流行严重的村庄歧视相对较轻,艾滋病流行较轻的村庄歧视较严重.对艾滋病存在错误认识[57.5%(23/40)]、恐惧[32.5%(13/40)]及道德判断是歧视产生的主要原因.为了避免家人和孩子的正常生活受到影响,多数HIV感染者不愿暴露身份.结论 由于对艾滋病的错误认识等,导致歧视现象严重,亟须开展减少歧视相关工作.     

A comparison of HIV stigma and discrimination in five international sites: The influence of care and treatment resources in high prevalence settings

What accounts for differences in HIV stigma across different high prevalence settings? This study was designed to examine HIV stigma and discrimination in five high prevalence settings. Qualitative data were collected as part of the U.S. National Institute of Mental Health (NIMH) Project Accept, a multi-site community randomized trial of community-based HIV voluntary counseling and testing. In-depth interviews were conducted with 655 participants in five sites, four in Sub-Saharan Africa and one in Southeast Asia. Interviews were conducted in the local languages by trained research staff. Data were audiotaped, transcribed, translated, coded and computerized for thematic data analysis. Participants described the stigmatizing attitudes and behaviors perpetuated against people living with HIV/AIDS (PLWHA). The factors that contribute to HIV stigma and discrimination include fear of transmission, fear of suffering and death, and the burden of caring for PLWHA. The family, access to antiretrovirals and other resources, and self-protective behaviors of PLWHA protected against HIV stigma and discrimination. Variation in the availability of health and socioeconomic resources designed to mitigate the impact of HIV/AIDS helps explain differences in HIV stigma and discrimination across the settings. Increasing access to treatment and care resources may function to lower HIV stigma, however, providing services is not enough. We need effective strategies to reduce HIV stigma as treatment and care resources are scaled up in the settings that are most heavily impacted by the HIV epidemic.     

HIV-related stigmatization and discrimination: Its forms and contexts

For more than two decades, HIV-related stigmatization, discrimination and denial have characterized the pandemic and presented a major challenge to the effectiveness of prevention, care and treatment programmes. Much of the societal and individual reaction towards people with HIV/AIDS may arise from stigma towards those most affected, where fear and blame are assigned and from which societal, political and behavioural responses are derived. Stigmatization and discrimination are reported to occur in a variety of forms–from societal level responses such as coercive government policies and laws, to apathy and denial of the HIV epidemic. At the individual level, the internalization of these societal responses may result in an individual's self-exclusion from information, treatment and care. Stigmatization and discrimination are explored through sociocultural understandings of illness and disease transmission and its manifestations at societal and invidividual level. Contexts of discrimination are briefly investigated and include employment, health care systems, travel and migration. Although there are widespread reports of HIV-related discrimination throughout the world there has also been significant progress towards reducing these practices. In addition to what is being done there is still much that we need to understand about the forms and contexts of stigmatization and discrimination if we are to succeed in our efforts to control the HIV epidemic.     

The social context of food insecurity among persons living with HIV/AIDS in rural Uganda

HIV/AIDS and food insecurity are two of the leading causes of morbidity and mortality in sub-Saharan Africa, with each heightening the vulnerability to, and worsening the severity of, the other. Less research has focused on the social determinants of food insecurity in resource-limited settings, including social support and HIV-related stigma. In this study, we analyzed data from a cohort of 456 persons from the Uganda AIDS Rural Treatment Outcomes study, an ongoing prospective cohort of persons living with HIV/AIDS (PLWHA) initiating HIV antiretroviral therapy in Mbarara, Uganda. Quarterly data were collected by structured interviews. The primary outcome, food insecurity, was measured with the Household Food Insecurity Access Scale. Key covariates of interest included social support, internalized HIV-related stigma, HIV-related enacted stigma, and disclosure of HIV serostatus. Severe food insecurity was highly prevalent overall (38%) and more prevalent among women than among men. Social support, HIV disclosure, and internalized HIV-related stigma were associated with food insecurity; these associations persisted after adjusting for household wealth, employment status, and other previously identified correlates of food insecurity. The adverse effects of internalized stigma persisted in a lagged specification, and the beneficial effect of social support further persisted after the inclusion of fixed effects. International organizations have increasingly advocated for addressing food insecurity as part of HIV/AIDS programming to improve morbidity and mortality. This study provides quantitative evidence on social determinants of food insecurity among PLWHA in resource-limited settings and suggests points of intervention. These findings also indicate that structural interventions to improve social support and/or decrease HIV-related stigma may also improve the food security of PLWHA.     

The influence of AIDS stigma and discrimination and social cohesion on HIV testing and willingness to disclose HIV in rural KwaZulu-Natal,South Africa

Abstract

This study aims to understand the influence of AIDS stigma and discrimination, and social cohesion to HIV testing, and willingness to disclose an HIV status. A cross-sectional, interviewer administered survey (N=594) was conducted. Independent sample t-tests explored the mean differences between sex and age groups on stigma, discrimination, and social cohesion measurement. Logistic regression models were fitted with the above independent variables, and the binominal dependent variables: having had a test, willingness to have a test and disclose a positive status. The mean age of participants was 25.3 years and 60% were women. Only 28% had an HIV test, 63% were willing to have a test, and 82% reported a willingness to disclose an HIV status. High levels of stigma and discrimination were anticipated from the community, less so from their partners, and very little from families. Low levels of social distance exist towards people with HIV/AIDS, membership to social networks seems limited, and inadequate social support for people with HIV/AIDS was reported. The analysis indicates that AIDS stigma and discrimination, and inadequate social cohesion, limit access to voluntary counselling and testing (VCT), inhibit disclosure, and are, thus, barriers to care, support and prevention. Interventions need to extend the focus on information and education to strengthen social capital within a participatory and sustainable development framework.     

The social context of food insecurity among persons living with HIV/AIDS in rural Uganda

HIV/AIDS and food insecurity are two of the leading causes of morbidity and mortality in sub-Saharan Africa, with each heightening the vulnerability to, and worsening the severity of, the other. Less research has focused on the social determinants of food insecurity in resource-limited settings, including social support and HIV-related stigma. In this study, we analyzed data from a cohort of 456 persons from the Uganda AIDS Rural Treatment Outcomes study, an ongoing prospective cohort of persons living with HIV/AIDS (PLWHA) initiating HIV antiretroviral therapy in Mbarara, Uganda. Quarterly data were collected by structured interviews. The primary outcome, food insecurity, was measured with the Household Food Insecurity Access Scale. Key covariates of interest included social support, internalized HIV-related stigma, HIV-related enacted stigma, and disclosure of HIV serostatus. Severe food insecurity was highly prevalent overall (38%) and more prevalent among women than among men. Social support, HIV disclosure, and internalized HIV-related stigma were associated with food insecurity; these associations persisted after adjusting for household wealth, employment status, and other previously identified correlates of food insecurity. The adverse effects of internalized stigma persisted in a lagged specification, and the beneficial effect of social support further persisted after the inclusion of fixed effects. International organizations have increasingly advocated for addressing food insecurity as part of HIV/AIDS programming to improve morbidity and mortality. This study provides quantitative evidence on social determinants of food insecurity among PLWHA in resource-limited settings and suggests points of intervention. These findings also indicate that structural interventions to improve social support and/or decrease HIV-related stigma may also improve the food security of PLWHA.