Understanding HIV-related stigma and discrimination in a "blameless" population.

HIV-related stigma and discrimination are major barriers to the successful control of HIV. Stigma is associated with the disease as well as the behaviors that lead to infection. A qualitative study was conducted to identify the reasons, sources, and types of HIV-related stigma prevalent in rural China. Eighty in-depth interviews were conducted with people living with HIV/AIDS, their family members, health care providers, and uninfected villagers. Stigmatizing behaviors were primarily associated with fear of HIV rather than with the route of infection. Uninfected villagers were the main source of discrimination, with health workers and family members also holding some stigmatizing attitudes. A primary concern for HIV-positive villagers was protecting their families, especially their children, from discrimination. Secondary stigma also extended to un- infected members of the same village. The results have been used to develop an intervention to reduce fear of casual transmission and stigma in these communities.     

A qualitative exploration of parental experiences of stigma while living with HIV in Bangladesh

With much of the focus on the “risk” groups, families have often been less studied in HIV research. Further, because of a focus on the aetiology and epidemiology of HIV, the social impacts associated with HIV on families and neighbours are sometimes overlooked. This study examined parental experiences of stigma and discrimination while living with HIV within a family context in Bangladesh. A qualitative research design using a grounded theory approach was used for this research. Data was collected through in-depth interviews with 19 HIV-positive parents, recruited with the support of two self-help groups of HIV-positive people, in two settings namely Khulna and Dhaka in Bangladesh. The findings indicate that HIV-positive parents held the view that they continue to experience significant stigma and their narratives clearly show how this affected them and their children. A range of informal practices were enacted in everyday contexts by extended family and community members to identify, demarcate and limit the social interaction of HIV-positive parents. Parents highlighted a number of factors including negative thoughts and behaviours, rejection, isolation and derogatory remarks as manifestations of stigma and discrimination, impacting upon them and their children because of their association with HIV.     

“It is not possible to go inside and have a discussion”: how fear of stigma affects delivery of community-based support for children’s HIV care

Caregivers mediate children’s access to HIV care and their adherence to treatment. Support for caregivers may improve health outcomes in children, but fear of HIV stigma and discrimination can affect both uptake and delivery of support services. Within a trial evaluating community-based support for caregivers of newly HIV diagnosed children in Harare, Zimbabwe, we conducted a longitudinal qualitative study to explore how stigma affected delivery and acceptance of the intervention. We conducted semi-structured interviews with 36 caregivers, 15 children, and 20 community health workers (CHWs). Children and caregivers described experiencing or witnessing stigma and discrimination, causing some to resist home visits by CHWs. Anxiety around stigma made it difficult for CHWs to promote key messages. In response, CHWs adapted the intervention by meeting caregivers outside the home, pretending to be friends or relatives, and proactively counteracting stigmatising beliefs. As members of local communities, some CHWs shared concerns about discrimination. HIV stigma can hinder “getting a foot over the threshold” in community-based programmes, particularly for households most affected by discrimination and thus least likely to engage with services. For community support programmes to be effective, stigma-related resistance should be addressed from the outset, including CHWs’ own concerns regarding HIV stigma.     

A Qualitative Study of Stigma and Discrimination against People Living with HIV in Ho Chi Minh City,Vietnam

Stigma and discrimination against people living with HIV/AIDS (PLHIV) are a pressing problem in Vietnam, in particular because of propaganda associating HIV with the “social evils” of sex work and drug use. There is little understanding of the causes and sequelae of stigma and discrimination against PLHIV in Vietnam. Fifty-three PLHIV participated in focus group discussions in Ho Chi Minh City. Nearly all participants experienced some form of stigma and discrimination. Causes included exaggerated fears of HIV infection, misperceptions about HIV transmission, and negative representations of PLHIV in the media. Participants faced problems getting a job, perceived unfair treatment in the workplace and experienced discrimination in the healthcare setting. Both discrimination and support were reported in the family environment. There is a need to enforce laws against discrimination and provide education to decrease stigma against PLHIV in Vietnam. Recent public campaigns encouraging compassion toward PLHIV and less discrimination from healthcare providers who work with PLHIV have been encouraging.     

Experiences of families caring for an HIV-infected child in KwaZulu-Natal, South Africa: an exploratory study

In South Africa, 2.5% of children are living with HIV. KwaZulu-Natal is the province most affected by the epidemic and has the highest number of pregnant women living with HIV. This study reports on a qualitative study to assess the views and experiences of those involved in caring for a child with HIV/AIDS. In-depth interviews were conducted in KwaZulu-Natal with 13 women who were the primary caregivers of a child with HIV/AIDS and 12 key informants who worked with children and families living with HIV/AIDS. The combination of widespread poverty and HIV-related stigma was perceived to compromise the health of a child with HIV/AIDS. Caregivers' primary focus was on economic survival and there was little income to meet basic human needs including the child's. Stigmatizing attitudes caused some caregivers to keep their child's sickness a secret and symptoms were sometimes ignored or treatment delayed. Little material and emotional support was available to caregivers who were overwhelmed by multiple stresses in this context. Support group interventions for caregivers of children with HIV/AIDS can be a useful resource provided that they jointly address the economic and psychological needs of caregivers. A stronger commitment at the national level to reduce poverty and HIV-related stigma is needed to strengthen the capacity of families who are caring for children with HIV/AIDS.     

Provider perceptions of stigma and discrimination experienced by adolescents and young adults with pHiV while accessing sexual and reproductive health care

Historically, children with perinatally-acquired HIV (PHIV) were viewed as the “innocent victims” as their HIV infection was not acquired through sexual/drug related means. Today, adolescents with PHIV are surviving into young adulthood and are engaging in developmentally expected behaviors such as establishing intimate, sexual relationships. Like other youth, those living with PHIV often need to access sexual and reproductive health (SRH) services. Previous research has documented stigma and discrimination experienced by adult women living with HIV as they try to access SRH care. However, little is known about the experiences of stigma and discrimination encountered by the maturing adolescents and young adults (AYA) with PHIV when accessing services. HIV health care providers (HHCPs) who frequently care for this population are in a unique position to learn about and understand the stigma and discrimination experienced by their patients in formal service settings. HHCPs (n?=?57, 28 medical and 29 social service providers) were recruited using snowball sampling, and completed an online survey based on patient-shared experiences of stigma and discrimination when accessing SRH-related health care and social services. Thirty-eight percent (22/57) of providers reported that their patients with PHIV had shared encounters of stigma or discrimination when accessing SRH services. Coded open-ended provider comments indicated that AYA patients experienced challenges with providers who were unfamiliar with PHIV and expressed surprise that someone with PHIV was still alive. Analyses also revealed prejudicial attitudes towards women with HIV. Patients reported being counseled to terminate their pregnancy and lectured about their “poor choices.” As AYA with PHIV transition out of pediatric and adolescent care, it is important for providers to simultaneously help them navigate care in other health settings, as well as educate adult health care providers about possible misconceptions of caring for individuals with PHIV.     

Stigma, burden, social support, and willingness to care among caregivers of PLWHA in home-based care in South Africa

Despite its benefits for people living with HIV/AIDS (PLWHA), home-based care (HBC) may have negative effects on caregivers. Caregivers experience high levels of burden and may be targets of HIV-related prejudice and discrimination. In this cross-sectional survey of 358 caregivers from five hospices across KwaZulu-Natal, South Africa, 49 (13.7%) caregivers personally experienced discrimination as a result of caring for PLWHA. One hundred and seventy (47.5%) marked one or more items on the HIV stigma scale. Eighty-eight percent had low to moderate levels of caregiver burden. People with higher level of burden and higher income were more likely to hold stigmatizing beliefs. Caregivers with the following characteristics: support from a nurse, support from community careworker, HIV stigmatizing beliefs, and personal experience of discrimination as result of caring for PLWHA and low caregiver burden, had more than twice the odds of wanting to care for another PLWA in the future. Overall, caregivers in HBC experience low level of severe caregiver burden. The support offered to caregivers from the hospice and relatively low levels of discrimination encourage expansion of HBC programs for PLWHA.     

Parental concerns on disclosure of HIV status to children living with HIV: children’s perspective

Disclosure is an important component of comprehensive management of children living with HIV infection (CLHIV). Many parental concerns are barriers for disclosure in children and only few studies addresses children’s perspective on these concerns. Our study aims to understand children’s perspective on parental concerns for disclosure and assess the knowledge of HIV. A questionnaire-based cross-sectional study involving CLHIV between 10 and 18 years attending HIV clinic in southern India, was conducted. Data were collected by directly interviewing only the children after obtaining consent from parents/caregivers. Initial open-ended questions were asked to assess the disclosure status and only fully disclosed children were included. Out of 362 enrolled eligible children, the prevalence of full and partial disclosure was 36.7% and 24%, respectively. The mean age of disclosure was 10.4 years (SD ± 2.6) and non-parental family members in an informal setting were the most common source of disclosure (38.3%). Forty-six percentages of parents were unaware of their child’s disclosure status. Only 2% had disclosed their status to others who were not part of their care. Among disclosed children, 33.8% became upset or sad upon knowing their status, 12% faced discrimination and 41.4% had complete knowledge about their illness. Though the prevalence of disclosure among CLHIV was high, a majority of them had incomplete knowledge about HIV infection. The parental concerns as reported in literature like the child is too young to disclose, concerns about coping, fear of stigma and discrimination and child disclosing to others were not expressed by children.     

Family and community level stigma and discrimination among women living with HIV/AIDS in a high HIV prevalence district of India

ABSTRACT

To examine HIV/AIDS-related stigma and discrimination in a high-HIV-prevalence district in India, we used data from a cross-sectional survey conducted recently among randomly selected married HIV-positive women, 15–29 years of age. Overall, 88% of respondents experienced stigma and discrimination from family and community. Factors associated with stigma and discrimination differed in the family and community contexts. Higher age gap between spouses and poor household status were significant in explaining the stigma and discrimination from husbands. Older age of the husband and lower household economic status significantly increased the stigma and discrimination from husbands’ family as well as from friends and neighbors. Different interventions should be developed for family and community contexts focusing on counseling for husbands, couples, family, and educational programs at the community level to reduce stigma and discrimination.     

HIV-related stigma experiences: Understanding gender disparities in Thailand

This paper assesses the relationship between gender and HIV-related stigma experiences among people living with HIV (PLHIV) – enacted and anticipated stigma – and PLHIV caregivers – courtesy stigma – in Northern Thailand, along with the underlying reasons for stigmatising attitudes towards PLHIV – instrumental and symbolic stigma – expressed in the general population. We used data from the Living With Antiretrovirals (LIWA) study conducted on all PLHIV receiving antiretroviral treatment in four district hospitals in Northern Thailand (n?=?513) and on a community sample of adults from the general population (n?=?500). Women living with HIV and female caregivers of PLHIV reported higher rates of HIV-related stigma experiences than men. Gender interacted with other predictors – the period of HIV diagnosis and age – to increase the level of stigma experienced. Among the general population, attitudes of contact avoidance were infrequent. However, stereotypes depicting PLHIV as blameworthy were highly pervasive, with women perceived as the “victims” of their spouse's irresponsible sexual behaviours. In this context, women were yet more often subjected to HIV-related stigma than men, in particular women diagnosed in the pre-antiretroviral therapy era and younger female caregivers. The role of gender in shaping disparities in HIV-related stigma experiences is discussed.     

Older Female Caregivers and HIV/AIDS-Related Secondary Stigma in Rural South Africa

South Africa’s HIV/AIDS epidemic poses a major public health threat with multi-faceted harmful impacts and ‘socially complex’ outcomes. While some outcomes relate to structural issues, others stem from society’s attitudinal milieu. Due to negative attitudes toward People Living with HIV/AIDS, stigmatisation mars their own experience and often extends to those close to them, in particular their caregivers. Many of the caregivers in South Africa are older women; thus, older women are the focus of this paper, which aims to examine HIV/AIDS-related stigma from their perspective. This paper explores secondary stigma as a socio-cultural impact of HIV/AIDS through repeated semistructured interviews with 60 women aged 50–75 in the MRC/Wits Rural Public Health and Health Transitions Unit research site (Agincourt), many of whom had cared for a family member with HIV/AIDS. Respondents’ narratives reveal that many older persons attribute high rates of death in their community to young persons’ lack of respect for societal norms and traditions. The findings illustrate the forms and expressions of HIV/AIDS-related secondary stigma and their impacts on older female caregivers. The types of secondary stigma experienced by the respondents include physical stigma in the form of isolation and separation from family members; social stigma in the form of voyeurism and social isolation; and verbal stigma in the form of being gossiped about, finger-pointing and jeering at them. Despite mixed reports about community responses toward infected and affected people, HIV/AIDS-related stigma remains a cause for concern, as evidenced by the reports of older women in this study.     

Stigma,discrimination, violence,and HIV testing among men who have sex with men in four major cities in Ghana

ABSTRACT

LGBTQ populations experience human rights abuses worldwide; data need to document the health impact of these experiences in Africa. In Ghana, we measured events of sexuality-based stigma, discrimination, and violence among men who have sex with men (MSM) and the impact on HIV testing behavior. Data are from respondent-driven sampling surveillance surveys in Accra/Tema, Kumasi, Cape Coast/Takoradi, and Koforidua. Discrimination was common among MSM: 6.2%–30.6% were refused services, 29.0%–48.9% experienced verbal/symbolic violence, 2.8%–12.8% experienced physical violence, 12.3%-30.0% experienced sexual violence due to their sexuality in the preceding year. MSM who experienced sexual violence in their first male sexual encounter were less likely to ever test for HIV in Accra/Tema and Cape Coast/Takoradi. Further studies are needed to examine the impact of stigma and violence on MSM's HIV health-seeking behavior in Ghana. Structural interventions are needed to mitigate the consequences of stigma and discrimination on MSM health and well-being.     

Depression,anxiety, stress and stigma in informal caregivers of People Living with HIV (PLHIV)

Informal caregivers are unpaid individuals who help friends or family members who cannot fully care for themselves. However fulfilling the act of helping debilitated individuals, exposure to another person’s traumatic experiences often results in psychological distress. Caregiver’s stigma towards HIV worsens this. Hence, this study aims to assess the effect of stigma on the mental health of caregivers so that their needs for support can be determined. A cross sectional hospital based study was carried out in Mangalore, India on 150 informal caregivers of PLHIV. The HIV Stigma Scale was used to assess stigma and DASS-21 was used to assess depression, anxiety and stress. Of the 150 caregivers, 20% marked one or more items on the stigma scale. Frequency of depression, anxiety and stress was 46%, 27% and 8% respectively. Most caregivers who had stigma and anxiety were of those patients diagnosed for a shorter duration of time (≤5 years) n?=?20, p?=?0.05 and n?=?26, p?=?0.03 respectively. Spouses of PLHIV (n?=?31, p?=?0.005), sero-positive caregivers (n?=?25, p?=?0.03) and those living with patients (n?=?39, p?=?0.01) suffered most from anxiety. Stress was significantly associated with depression (83%, p?=?0.007) and anxiety (66.6%, p?=?0.001) in caregivers. In conclusion, more of depression and anxiety was observed among the participants than stress. Stigma was seen in 20% of the participants. Stigma was not significantly associated with depression anxiety and stress.     

Association Between Enacted Stigma and HIV-Related Risk Behavior Among MSM,National HIV Behavioral Surveillance System, 2011

MSM bear a disproportionate burden of the HIV epidemic. Enacted stigma (overt negative actions) against sexual minorities may play an important role in increasing HIV risk among this population. Using data from the 2011 National HIV Behavioral Surveillance system, MSM cycle, we examined the independent associations between three measures of enacted stigma (verbal harassment, discrimination, physical assault) and engagement in each of four HIV-related risk behaviors as outcomes: condomless anal intercourse (CAI) at last sex with a male partner of HIV discordant or unknown status and, in the past 12 months, CAI with a male partner, ≥4 male sex partners, and exchange sex. Of 9819 MSM, 32% experienced verbal harassment in the past 12 months, 23% experienced discrimination, and 8% experienced physical assault. Discordant CAI at last sex with a male partner was associated with previous discrimination and physical assault. Past 12 month CAI with a male partner, ≥4 male sex partners, and exchange sex were each associated with verbal harassment, discrimination, and physical assault. These findings indicate that a sizable proportion of MSM report occurrences of past 12 month enacted stigma and suggest that these experiences may be associated with HIV-related risk behavior. Addressing stigma towards sexual minorities must involve an integrated, multi-faceted approach, including interventions at the individual, community, and societal level.     

AIDS-related stigma in sub-Saharan Africa: its contexts and potential intervention strategies

BACKGROUND: AIDS-related stigma discourages individuals who are aware of their HIV-positive status from sharing information about their status with their sexual partners and families, and makes it difficult to prevent the spread of the infection or to plan a secure future for surviving children and family members. It is essential that barriers to screening, prevention, and care are understood and removed so that persons living with HIV/AIDS can benefit optimally from available health and social services. OBJECTIVES: The objectives of this article are to summarize the literature on barriers posed by stigma to HIV/AIDS prevention and care in sub-Saharan Africa, to analyze the contexts in which AIDS-related stigma and discrimination are manifested, and to suggest potential prevention strategies. METHODS: The authors collected and reviewed published studies from standard research databases and reference lists of relevant articles. RESULTS: The ways in which AIDS stigma is overtly or covertly expressed are shaped by a range of social, cultural, political, and economic factors. Stigma plays into existing social inequalities and is manifested at all levels: in the wider society, in institutions, in families, and at the individual level. IMPLICATIONS FOR POLICY AND PRACTICE: Influences on AIDS-related stigma and discrimination are rooted in the structure of communities and societies, and therefore effective interventions should be based on a sound theoretical foundation and include attention to individual as well social and structural barriers. Given the diversity of cultures among the various countries in Africa, interventions to reduce AIDS stigma are likely to be more effective if they are context-specific and sensitive to the prevailing sociocultural and economic environment of each country.     

Families affected by HIV: parents' and children's characteristics and disclosure to the children

The reduced risk of mother-to-child transmission due to improved HIV treatment has resulted in an increasing number of healthy children born to mothers living with HIV. The study's objective was to identify the number of parents or caregivers in a sample of persons living with HIV in Flanders, the number of HIV-affected children as well as specific family-related characteristics. Using a structured survey quantitative data were assessed on a total of 628 patients at three Flemish Aids reference centres. Qualitative data were collected in a small sub-sample of African caregivers living in Flanders. Twenty-seven per cent of the overall sample had children younger than 18 years, totalling 165 HIV-affected families with 279 children. Parents from developing countries had significantly more children than European parents. One hundred and eighty-two (68%) of all children were HIV-negative, while the HIV status of 75 (28%) was unknown. Disclosure rate was low: 26 (10%) children were aware of the parental HIV disease. The study shows that HIV-affected families have to deal with complex psychosocial issues such as migration, family illness, family secrecy around HIV and disclosure. Service implications are discussed.     

Factors underlying taking a child to HIV care: implications for reducing loss to follow-up among HIV-infected and -exposed children

Objective: With the aim of reducing pediatric loss to follow-up (LTFU) from HIV clinical care programs in sub-Saharan Africa, we sought to understand the personal and socio-cultural factors associated with the behavior of caregivers taking HIV-infected and -exposed children for care in western Kenya.

Methods: Between May and August, 2010, in-depth interviews were conducted with 26 purposively sampled caregivers caring for HIV-infected (7), HIV-exposed (17) and HIV-unknown status (2) children, documented as LTFU from an urban and rural HIV care clinic. All were women with a majority (77%) being biological parents. Interviews were audio-recorded, transcribed and content analyzed.

Results: Thematic content analysis of the women's perceptions revealed that their decision about routinely taking their children to HIV care involved multiple levels of factors including: (1) intrapersonal: transport costs, food availability, time constraints due to work commitment, disclosure of HIV status for both mother and child, perception that child is healthy and religious beliefs; (2) interpersonal: unsupportive male partner, stigma by the family and family conflicts; (3) community: cultural norms, changing community dynamics and perceived stigma; (4) health care system: clinic location, lack of patient-centered care, delays at the clinic and different appointment schedules (mother and child). Furthermore, the factors across these different levels interacted with each other in a complex way, illustrating the challenges women face in taking their children to HIV care.

Conclusion: The complexity and interconnectedness of the factors underlying retention of children in HIV care perceived by these women caregivers suggests that interventions to reduce pediatric LTFU need to be holistic and address multiple socio-ecological levels. Patient-centered care that integrates a family-centered approach to HIV pediatric care is recommended.     

Weighing up the burden of care on caregivers of orphan children: the Amajuba District Child Health and Wellbeing Project, South Africa

This paper assesses the burden on orphan caregivers relative to non-orphan caregivers in the context of high HIV/AIDS mortality in South Africa. It presents findings from the third round of a study conducted in the Amajuba District of KwaZulu-Natal between 2003 and 2007. Significant differences were found between orphan and non-orphan caregivers; the former being more likely to care for more children, have poorer health, higher levels of chronic illness, less adult help and they appeared to have more daily responsibilities. Orphan caregivers were also more likely to indicate that children in their care needed help for mental or behavioural problems but overall results showed that only 3.4% of all households had contact with child welfare agencies. The findings question assumptions about the capacity and capability of the extended family to absorb shocks to individuals and families.