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.     

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 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.     

Beliefs and practices about antiretroviral medication: a study of poor urban Kenyans living with HIV/AIDS

Interest in medication-taking as a social behaviour is growing. Drawing on qualitative data, this study interrogates beliefs and practices related to antiretroviral therapy (ART) use among urban poor Kenyan people living with HIV/AIDS (PLWHA). Responding PLWHA relied on a range of ingenious strategies to remember to take their medications but did not necessarily perceive compliance with medical instructions as key to treatment efficacy. They also believed that compliance can even hurt some patients. PLWHA relied on both compliance and non-compliance to seek social acceptance, maintain a reputation of being healthy, dispel rumours about one's status, and minimise economic vulnerability. Compliance was further used to mark gratitude to supportive caregivers and providers, and non-compliance to appraise the efficacy of other treatments which promise permanent cure. The medication-taking practices of poor Kenyan PLWHA reflect their struggles with deprived livelihoods and stigma.     

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.     

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.     

Can AIDS stigma be reduced to poverty stigma? Exploring Zimbabwean children's representations of poverty and AIDS

Objective We use children's drawings to investigate social stigmatization of AIDS‐affected and poverty‐affected children by their peers, in the light of suggestions that the stigmatization of AIDS‐affected children might derive more from the poverty experienced by these children than from their association with AIDS. Methods A qualitative study, in rural Zimbabwe, used draw‐and‐write techniques to elicit children's (10–12 years) representations of AIDS‐affected children (n= 30) and poverty‐affected children (n= 33) in 2009 and 2010 respectively. Results Representations of children affected by AIDS and by poverty differed significantly. The main problems facing AIDS‐affected children were said to be the psychosocial humiliations of AIDS stigma and children's distress about sick relatives. Contrastingly, poverty‐affected children were depicted as suffering from physical and material neglect and deprivation. Children affected by AIDS were described as caregivers of parents whom illness prevented from working. This translated into admiration and respect for children's active contribution to household survival. Poverty‐affected children were often portrayed as more passive victims of their guardians' inability or unwillingness to work or to prioritize their children's needs, with these children having fewer opportunities to exercise agency in response to their plight. Conclusions The nature of children's stigmatization of their AIDS‐affected peers may often be quite distinct from poverty stigma, in relation to the nature of suffering (primarily psychosocial and material respectively), the opportunities for agency offered by each affliction, and the opportunities each condition offers for affected children to earn the respect of their peers and community. We conclude that the particular nature of AIDS stigma offers greater opportunities for stigma reduction than poverty stigma.     

"I have lost sexual interest …"-challenges of balancing personal and professional lives among nurses caring for people living with HIV and AIDS in Limpopo, South Africa

As part of a capacity-building research project, this study examined the extent to which caring for people living with HIV and AIDS (PLWHA) affects both professional and personal relationships of nurse caregivers. The data were collected using focus group interviews with 17 female nurses at two Limpopo hospitals. The PEN-3 cultural model was used as a theoretical framework for exploring how nurses balance job demands with family responsibilities. The results generated three themes: the multiple identities nurses experience within their family and professional lives; nurse attitudes related to patient gender; and stigma experienced by nurses who care for PLWHA. Caring for PLWHA influences nurses' personal and professional lives by interfering with their perceptions and emotions as they relate to spousal, parental, and gendered relationships. The findings offer insight into factors requiring consideration when designing interventions to help nurses cope with the stress associated with caring for PLWHA while simultaneously managing family responsibilities.     

泰安市艾滋病病毒感染者/艾滋病患者生存状况

目的了解泰安市HIV/AIDS患者的生存状况,为制定相关的救治救助政策和干预措施提供科学依据。方法使用自行设计的调查问卷、焦虑自评量表、抑郁自评量表和社会支持评定量表对本地区能随访到的全部HIV/AIDS患者进行面对面的问卷调查。结果调查的36例HIV/AIDS患者感觉自己生活质量很好或较好的仅占22.22%,4/36评定有焦虑,13/36评定有抑郁,家庭收入低于当地农民平均水平;年龄小于30岁、最近1个月参与社交活动多、最近1次CD4细胞检测结果高、没有接受抗病毒治疗的HIV/AIDS患者自我感觉生活状况较好,差异有统计学意义(P<0.05)。结论HIV/AIDS患者自我感觉生活状况差,部分存在心理问题,经济收入较低,应进一步加大心理支持和社会救助。     

An examination of the social networks and social isolation in older and younger adults living with HIV/AIDS

This study examined social networks and social isolation in older (50 years or more) and younger (ages 20 to 39) adults with HIV/AIDS. The author conducted interviews with 88 individuals living with HIV/AIDS in the Pacific Northwest. Both groups' social networks had similar patterns; however, older adults were more likely to live alone. More than 38 percent of older adults and 54 percent of older adults of color were at risk of social isolation compared with 25 percent of those 20 to 39 years of age. Older men and older adults of color had significantly lower scores on the social network scale than others. Having a confidant and receiving instrumental support were significantly correlated with reduced HIV stigma. Implications for social work practitioners are discussed.     

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.     

艾滋病毒感染者/艾滋病患者与其家属艾滋病相关羞辱和歧视的研究

目的 了解某农村社区艾滋病毒感染者/艾滋病患者(HIV/AIDS)与其家属遭遇的羞辱和歧视,并分析造成相关羞辱和歧视的原因.方法 采用自制调查问卷,对某农村艾滋病流行区的117例HIV/AIDS及其相应的190名健康家属进行面对面问卷调查.结果 HIV/AIDS与其家属遭受到的羞辱和歧视可分为两类,即内在的羞辱和歧视及外在的羞辱和歧视;这两种羞辱和歧视在HIV/AIDS与其家属之间的差异有统计学意义(t=-12.540,P=0.000);且HIV/AIDS与其家属遭受的内在的羞辱和歧视要高于外在的羞辱和歧视.艾滋病内在的羞辱和歧视与研究对象的自我效能(OR=0.558,P=0.041)、家庭功能(OR=0.650,P=0.027)、是否感染HIV(OR=2.116,P=0.004)等因素有关.艾滋病外在的羞辱和歧视与研究对象的自我效能(OR=0.468,P=0.028)、家庭功能(OR=0.427,P=0.000)、是否感染HIV(OR=3.412,P=0.001)有关.结论 某农村社区HIV/AIDS与其家属在社会环境中均遭受到一定的内在、外在的羞辱和歧视,应采取有针对性的策略和措施,减少并消除这种羞辱和歧视.     

HIV/AIDS Stories on the World Wide Web and Transformation Perspective

ABSTRACT

Survivor stories have been an important part of therapy and social support for persons living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome AIDS (PLWHAs), and the World Wide Web has made these stories accessible to a vast audience. These stories are examined in the light of the concept of “transformation perspective” defined as a self-communicative experience that changes an individual's life so that priorities and self-identity are refocused. The trigger event that alters the individual's life might be a diagnosis with cancer, HIV, diabetes, or some other serious illness; divorce; financial tragedy; unemployment; or retirement. The “disorienting dilemma,” according to Mezirow, leads to self-examination, and thus to changes in the individual's frame of reference. The present study found that PLWHA's stories with more details were more likely to reflect transformation perspective.     

‘My biggest fear was that people would reject me once they knew my status…’: stigma as experienced by patients in an HIV/AIDS clinic in Johannesburg,South Africa

Stigma is not a new concept; however, it remains highly significant in the context of HIV/AIDS in South Africa. There is wide consensus that HIV/AIDS‐related stigma compromises the well‐being of people living with the disease. This paper is part of a larger study that seeks to understand the social and cultural complexity related to the provision and outcomes of antiretroviral therapy (ART) in South Africa. It explores and analyses how patients on ART perceived and experienced stigma and how it has shaped their behaviour towards, as well as their understanding of the epidemic. The data have been collected by means of in‐depth face‐to‐face interviews, conducted between June and November 2007, with a sample of 44 patients in an HIV/AIDS clinic in a resource‐limited setting in Johannesburg, South Africa. The findings reveal that the level of felt and anticipated stigma is intense and affects all dimensions of living with HIV/AIDS, particularly disclosure and treatment. Stigma permeates the experience of HIV‐positive people on ART who participated in this study. The intensity of HIV/AIDS‐related stigma can threaten to compromise the value of ART, thus impacting on the daily lives of people living with HIV/AIDS (PLWHA). This study suggests that three decades into the epidemic, stigmatisation remains a core feature of the patient experience of HIV/AIDS. In the clinic in which this research was conducted, HIV/AIDS was regarded as a chronic condition increasingly manageable by ongoing access to ART. However, this approach was not shared by many family members, neighbours and employers who held highly stigmatised views.     

HIV/AIDS-related stigma in Kumasi, Ghana

ObjectiveTo assess HIV/AIDS-related stigma and discrimination of people living with HIV/AIDS (PLWHA) in Kumasi, Ghana.MethodsA cross-sectional survey of 104 adults from the four sub-districts in Kumasi was conducted.ResultsFour stigma constructs, employment-based discrimination, screening and identification of HIV positive people, revelation of HIV status and social contact stigma were determined based on reliability measures from responses to the questionnaire. Regression analysis showed that participants with higher educational attainment were more likely to favor policies denying employment to PLWHA (p<0.05), but disapproved of revealing HIV sero-status (p<0.05). Muslims were more likely than Christians to agree with identifying PLWHA (p<0.05) and more likely to advocate revealing HIV sero-status (p<0.05). Males were more likely to favor revealing HIV status (p<0.05). Employed persons were more likely to have social contact with PLWHA (p<0.05).ConclusionsThese findings are useful in guiding the design of interventions against HIV/AIDS-related stigma in Kumasi.     

Family systems and HIV/AIDS in South Africa

This study examines the role of family in the care and support of people living with HIV/AIDS (PLWHA) as a way of reducing the burden of stigma in the family. The PEN-3 model provided the cultural framework for this study. Data were drawn from participants' responses in 27 focus groups interviews conducted in South Africa. Participants were asked to discuss experiences of people living with HIV and AIDS in the family. The results highlight the positive and supportive aspects of the family, acknowledge the existential and unique aspects, and discuss the negative experiences shared by participants. This study's findings stress the need to take into account families' experiences with HIV and AIDS in the development of interventions aimed at reducing the burden of the disease on family systems and improving care and support for PLWHA.     

HIV感染者/AIDS患者的家属及朋友感染HIV的相关因素分析

目的 探讨人类免疫缺陷病毒（human immunodeficiency virus,HIV）感染者/获得性免疫缺陷综合征（acquired immunodeficiency syndrome,AIDS）患者的家属及朋友感染HIV的现状和相关影响因素。方法 采取横断面研究设计,通过方便抽样方法和自行设计的调查问卷,于2013年3～6月对广州市第八人民医院感染科住院及门诊部的192名HIV感染者/AIDS患者的家属及朋友进行面对面问卷调查。结果 192位HIV感染者/AIDS患者的家属及朋友中,感染者家属占86.5%（166/192）,感染者家属及朋友的HIV感染率为36.5%（70/192）。多因素Logistic回归分析表明,与感染者的关系为配偶或性伴（OR=4.464,95%CI:2.128～9.366）、同性恋/双性恋（OR=4.523,95%CI:1.676～12.209）、吸毒（OR=6.755,95%CI:1.720～26.528）是感染者家属及朋友感染HIV的危险因素;与感染者感情关系亲密（OR=0.229,95%CI:0.097～0.539）是其感染HIV的保护因素。结论 HIV感染者/AIDS患者的配偶或性伴与其存在着性关系,故感染HIV风险较其他亲友高,但与HIV感染者/AIDS患者感情亲密的配偶或性伴较感情疏远者感染HIV风险低。同性恋/双性恋、吸毒是感染HIV的高危因素。关于与HIV感染者/AIDS患者感情关系和除配偶或性伴以外其他亲友感染HIV的相关关系,仍需进一步研究。     

Visions and Voices: indigent persons living with HIV in the southern United States use photovoice to create knowledge, develop partnerships, and take action

Little is known about the experiences of persons living with HIV/AIDS (PLWHA) in some regions of the United States that are disproportionately affected by HIV/AIDS. "Visions and Voices: HIV in the 21st Century" was an exploratory study to gain insight into the life experiences of 15 indigent PLWHA. The study used photovoice to uncover the realities of living with HIV/AIDS though photographic documentation and Freirean-based critical dialogue and facilitate a process for PLWHA to reach local community members and leaders, policy makers, and advocates to develop plans of action and effect change. From the participants' photographs and words, seven themes emerged and were presented during a community forum. Three main outcomes occurred, including a participant-developed and locally funded gallery exhibition to address HIV/AIDS misinformation and stigma; a new partnership with the public health department to use PLWHA in their prevention programming; and increased community efforts to address substance use.     

Perceived HIV stigma in AIDS caregiving dyads

This study examines perceived HIV stigma in AIDS caregiving dyads in the United States, assessing the measurement of and correlates of personal stigma (among care-recipients living with HIV), courtesy stigma (among caregivers), and dyadic stigma. Survey data from 135 dyads in which the caregiver is a midlife or older mother or wife, and the care-recipient is her HIV-infected adult son or husband, are analyzed with individual-level and multilevel regression models. Results indicate that: (1) perceived stigma can be reliably measured among both persons living with HIV (PLH) and caregivers; (2) personal stigma can be distinguished from courtesy stigma; (3) perceived stigma is relatively low in this sample, and is higher among PLH than caregivers, higher among caregiving wives than mothers, and similar between PLH who are husbands and sons; (4) dyadic stigma is influenced by the caregiver's HIV status, the ethnic composition of the dyad, caregiving duration, and household income; (5) stigma discrepancy within dyads is a function of health discrepancy within dyads; and (6) differences in multivariate correlates of perceived stigma at the individual-level, in comparison to the dyad-level, suggest that dyadic stigma is a unique construct. A recognition that perceived stigma bears its own unique influence on the caregiving dyad is important for understanding how best to allocate resources aimed at alleviating stigma among individuals and families impacted by HIV.