Stigmatisation of alcohol use among people receiving antiretroviral therapy for HIV infection,Cape Town,South Africa

ABSTRACT

Antiretroviral therapy (ART) effectively treats HIV infection, with improved longevity and quality of life among people living with HIV. Alcohol use, however, remains a robust barrier to ART. This study, for the first time, examined the effects of the stigmatisation of alcohol use on ART adherence. Patients receiving ART in Cape Town, South Africa who currently drink alcohol (N?=?187) and those who do not drink alcohol (N?=?106) completed measures of alcohol use, alcohol-ART adherence, and alcohol-ART stigma. Participants also provided permission to access their most recent HIV viral load from clinic medical records. Results of a mediation model demonstrated significant detrimental effects of alcohol use on ART adherence. In addition, the indirect effects of alcohol use on ART adherence through alcohol-ART stigma was also significant, indicating that alcohol-ART stigma at least in part mediates the association between alcohol use and ART adherence. The same pattern of results was observed in relation to HIV viral load obtained from medical records. Interventions designed to address alcohol use as a barrier to ART adherence should incorporate alcohol-ART stigma as a barrier to adherence as well as a barrier to participating in adherence interventions.     

HIV/AIDS stigma attitudes among educators in KwaZulu-Natal, South Africa

BACKGROUND: One hundred and twenty educators from KwaZulu-Natal, South Africa, underwent HIV/AIDS training. The educators were surveyed about their attitudes toward people with HIV. METHODS: The educators completed self-administered survey questionnaires both before and after 2 interventions. Measures included demographic characteristics, teachers' knowledge about HIV/AIDS, self-efficacy in handling HIV/AIDS situations, and attitudes (stigma and otherwise) toward HIV-related issues. The first intervention was a CD-ROM and the second intervention involved educators receiving a 2-day workshop on HIV transmission, risk factors, and actions that educators should know and undertake. The first step entailed testing the stigma instrument for its internal consistency and developing and testing potential subscales from the instrument. The second step entailed testing for the statistical associations between stigma (as measured by the stigma instrument and its subscales) and various demographic and HIV knowledge-related variables. RESULTS: The overall stigma scale had a Cronbach α coefficient of .66. Educators in the workshop generally had lower baseline levels of stigma than those in the CD-ROM intervention. Following both interventions, the stigma levels of both groups of educators were significantly reduced. Improvements in the general knowledge about HIV as a disease and in the specific knowledge about HIV transmission risks were both statistically significantly associated with reductions in stigma attitudes, having controlled for educators' baseline stigma levels and demographic profiles. CONCLUSIONS: The levels of teachers' stigma attitudes were statistically significantly lower after both types of HIV/AIDS training and were also statistically significantly associated with improvements in HIV knowledge.     

Preferential adherence to antiretroviral therapy over tuberculosis treatment: A qualitative study of drug-resistant TB/HIV co-infected patients in South Africa

Adherence to antiretroviral therapy (ART) and second-line antituberculosis medications is essential to achieve successful outcomes among individuals co-infected with HIV and multi or extensively drug-resistant TB (M/XDR-TB). In 2012–2013, we designed a qualitative study to explore barriers to adherence in KwaZulu-Natal, South Africa. We conducted six focus groups comprising 23 adults receiving treatment for either MDR-TB (n = 2) or XDR-TB (n = 21); 17 were on concurrent ART. Participants expressed a preference for ART over M/XDR-TB treatment as a result of greater tolerability, lower pill burden and a commitment to ART. Treatment outcomes and the social morbidity associated with M/XDR-TB, characterised by public notification, stigma and social isolation, were perceived to be worse than with HIV. Poor communication, low patient involvement and provider supervision of treatment exacerbated participants' negative experiences with TB care. To improve adherence, it is critical that new regimens for drug-resistant TB be developed with better efficacy, lower pill burden and fewer adverse effects. For the first time, such improved regimens are on the horizon. In parallel and equally important is the implementation of a cohesive approach that promotes patient involvement, empowerment and treatment literacy for HIV and for TB.     

Barriers to post exposure prophylaxis (PEP) completion after rape: a South African qualitative study

Sexual violence and HIV are two serious public health problems in South Africa. Post exposure prophylaxis (PEP) to prevent HIV after rape was introduced into the South African public health services in 2002 but many questions on the completion of PEP medication remain. A qualitative study involving in-depth interviews was conducted with 29 women attending sexual assault services in an urban and a rural site to explore PEP use after rape. It showed how PEP adherence was a complex and challenging experience, with survivors experiencing disruptions in their lives and unable to adhere to the medication adequately. Only nine completed their prescribed drug regimes. Rape stigma and perceptions of rape impacted on adherence, which became a lesser priority if the rape was contested by important others. Being blamed and not receiving social support had profound psychological impact. Stigma of rape and fear of HIV played very powerful roles in debilitating women's ability to take medication to prevent HIV infection. Further research is needed to support the development of interventions that acknowledge the complex barriers to adherence of PEP after rape.     

HIV Care Cascade Among Adolescents in a “Test and Treat” Community-Based Intervention: HPTN 071 (PopART) for Youth Study

PurposeThe PopART for Youth (P-ART-Y) study was nested within the HPTN 071 (PopART) trial, a three-arm community randomized trial in 21 communities in Zambia and South Africa. The P-ART-Y study evaluated the acceptability and uptake of a combination HIV prevention package among young people. We report on the HIV care cascade for adolescents aged 10–19 years from 14 communities receiving the full HIV prevention package in Zambia and South Africa.MethodsAdolescents were offered participation in the PopART intervention, which included universal home-based HIV testing, linkage to care, antiretroviral therapy (ART) adherence, and other services. Data were collected from September 2016 to December 2017, covering the third round (R3) of the intervention.ResultsWe enumerated (listed) 128,241 adolescents (Zambia: 95,295 and South Africa: 32,946). Of the adolescents offered HIV testing, 81.9% accepted in Zambia and 70.3% in South Africa. Knowledge of HIV status was higher among older adolescents and increased from 31.4% before R3 to 88.3% at the end of R3 in Zambia and from 28.3% to 79.5% in South Africa. Overall, there were 1,710 (1.9%) adolescents identified as living with HIV by the end of R3 (515 new diagnoses and 1,195 self-reported). Of the new diagnoses, 335 (65.0%) were girls aged 15–19 years. The median time to initiate ART was 5 months. ART coverage before and after R3 increased from 61.3% to 78.7% in Zambia and from 65.6% to 87.8% in South Africa, with boys having higher uptake than girls in both countries.ConclusionsThe PopART intervention substantially increased coverage toward the first and second UNAIDS 90-90-90 targets in adolescents.     

‘We have goals but [it is difficult]’. Barriers to antiretroviral therapy adherence among women using alcohol and other drugs living with HIV in South Africa

BackgroundWomen living with HIV who misuse alcohol and live in economically disadvantaged settings in South Africa experience a multitude of contextual barriers as they navigate the HIV care continuum. The Women''s Health CoOp (WHC), a brief, woman‐focused, behavioural, evidence‐based intervention, has been shown to be effective in reducing heavy drinking and improving HIV‐related outcomes among this key population. However, these women face other broader socioecological barriers to antiretroviral therapy (ART) adherence.MethodsThe WHC was implemented in a modified, stepped‐wedge implementation science trial in public health clinics and substance use treatment programmes in Cape Town, South Africa. A qualitative substudy was conducted to explore barriers to HIV treatment adherence among women enrolled in this trial. Eight focus group discussions were conducted with 69 participants 6 months after completion of the WHC workshops. Focus groups were audio‐recorded (with consent), transcribed verbatim and analysed using a thematic approach.ResultsThe mean age of the participants was 33 years and the mean self‐reported number of drinks per day was 13. The main contextual factors influencing participants’ ART adherence were intrapersonal‐level factors (substance use, financial constraints, food insecurity; community‐level factors (anticipated and enacted stigma, community violence) and institutional‐level factors (patient–provider relationships, health facility barriers, environmental stigma).ConclusionComprehensive interventions addressing the contextual barriers and unique challenges faced by women who misuse alcohol in low‐resource settings that intersect with HIV treatment nonadherence should be implemented in tandem with successful biobehavioural HIV interventions for long‐term effectiveness and sustainability.Patient or Public ContributionOur South African community collaborative board has been involved throughout this study; participants and clinic staff voices have been essential in our interpretation of these findings.     

Stigma rises despite antiretroviral roll-out: A longitudinal analysis in South Africa

Stigma is a recognised problem for effective prevention, treatment, and care of HIV/AIDS. However, few studies have measured changes in the magnitude and character of stigma over time. This paper provides the first quantitative evaluation in Africa of the changing nature of stigma and the potential determinants of these changes. More specifically, it evaluates the dynamic relationship between stigma and (1) increased personal contact with people living with HIV/AIDS and (2) knowing people who died of AIDS. Panel survey data collected in Cape town 2003 and 2006 for 1074 young adults aged 14–22 years were used to evaluate changes in three distinct dimensions of stigma: behavioural intentions towards people living with HIV/AIDS; instrumental stigma; and symbolic stigma. Individual fixed effects regression models are used to evaluate factors that influence stigma over time. Each dimension of stigma increased in the population as a whole, and for all racial and gender sub-groups. Symbolic stigma increased the most, followed by instrumental stigma, while negative behavioural intentions showed a modest increase. Knowing someone who died of AIDS was significantly associated with an increase in instrumental stigma and symbolic stigma, while increased personal contact with people living with HIV/AIDS was not significantly associated with any changes in stigma. Despite interventions, such as public-sector provision of antiretroviral treatment (which some hoped would have reduced stigma), stigma increased among a sample highly targeted with HIV-prevention messages. These findings emphasise that changes in stigma are difficult to predict and thus important to monitor. They also indicate the imperative for renewed efforts to reduce stigma, perhaps through interventions to weaken the association between HIV/AIDS and death, to reduce fear of HIV/AIDS, and to recast HIV as a chronic manageable disease.     

Failure is not an option: Barriers to HIV treatment adherence in Kampala,Uganda

This study seeks to investigate challenges to combined antiretroviral therapy (cART) treatment adherence and treatment outcomes in Kampala, Uganda. Data was collected from a survey administered to two cohorts of patients with human immunodeficiency virus type 1 (HIV-1) receiving care and cART from the Joint Clinical Research Center (JCRC) in Kampala. Cohort I consisted of 93 individuals successfully treated on cART for a period of three years, while Cohort II consisted of 56 individuals who have experienced treatment failure with first-line cART within two years. We hypothesize that distance to the treatment facility would be a predictor of poor adherence and thus treatment failure. However, results suggested otherwise, whereby participants living more than 2 h away from their treatment facility were actually less likely to miss their daily dose of cART (OR = 0.33, p < .05), compared to those living in proximity to the treatment center. Further, high-income employment (OR = 3.82, p < .05) and partnered relationship status (OR = 4.28, p < .05) were predicted to increase the probability of missing doses. These findings may be explained by the deep-seated stigma which has remained pervasive in the lives of HIV-positive population in Kampala, even 30 years after the peak of the HIV/AIDS epidemic.     

Beyond stigma? Young children's responses to HIV and AIDS

This paper explores the manifestation of HIV-related stigma in seven- and eight-year-old white South African children's responses to HIV and AIDS. Drawing from elements of ethnographic and interview data, it shows how young children's responses to HIV and AIDS are inscribed within popular accounts of contagion and articulate gendered, sexual, raced and classed discourses in South Africa. Rejecting static accounts of stigma, the paper shows how children resist and confirm power inequalities involving intense self-regulation as well as inscribing within discourses of care and concern for others infected with HIV and AIDS. The findings have implications for scaling up educational efforts to address awareness of HIV and AIDS and stigma, but also to build on positive insights that young children demonstrate with regard to the disease.     

Fertility intentions among HIV-infected,sero-concordant couples in Nyanza province,Kenya

Research in sub-Saharan Africa has shown significant diversity in how HIV influences infected couples' fertility intentions. Supporting HIV-infected, sero-concordant couples in sub-Saharan Africa to make informed choices about their fertility options has not received sufficient attention. In-depth interviews were conducted among 23 HIV-positive, sero-concordant married couples in Kenya, to better understand how HIV impacted fertility intentions. HIV compelled many to reconsider fertility plans, sometimes promoting childbearing intentions in some individuals but reducing fertility plans among most, largely due to fears of early death, health concerns, stigma, perinatal HIV transmission and financial difficulties (particularly in men). Preferences for sons and large families influenced some couples' intentions to continue childbearing, although none had discussed their intentions with healthcare providers. Additional support and services for HIV-infected, sero-concordant couples are needed. Family planning counselling should be tailored to the unique concerns of HIV-infected couples, addressing perinatal transmission but also individual, couple-level and socio-cultural fertility expectations. Community-level programmes are needed to reduce stigma and make HIV-infected couples more comfortable in discussing fertility intentions with healthcare providers.     

Evaluation of a home-based voluntary counselling and testing intervention in rural Uganda

BACKGROUND: Uptake of HIV test results from an annual serosurvey of a population study cohort in rural southwestern Uganda had never exceeded 10% in any given year since inception in 1989. An intervention offering counselling and HIV results at home was conducted in four study villages following the 2001 serosurvey round, and followed by a qualitative evaluation exploring nature of demand and barriers to knowing HIV status. METHODS: Data from annual serosurveys and counsellor records are analyzed to estimate the impact of the intervention on uptake of HIV test results. Textual data are analyzed from 21 focus group discussions among counsellors, and men and women who had received HIV test results, requested but not yet received, and never requested; and 34 in-depth interviews equally divided among those who had received test results either from counselling offices and homes. RESULTS: Offering HIV results at home significantly increased uptake of results from 10 to 37% for all adults aged 15 (p<0.001), and 46% of those age 25 to 54. Previous male advantage in uptake of test results was effectively eliminated. Focus group discussions and in-depth interviews highlight substantial non-monetary costs of getting HIV results from high-visibility public facilities prior to intervention. Inconvenience, fear of stigmatization, and emotional vulnerability of receiving results from public facilities were the most common explanations for the relative popularity of home-based voluntary counselling and testing (VCT). It is seen as less appropriate for youth and couples with conflicting attitudes toward testing. CONCLUSIONS: Home delivery of results revealed significantly higher demand to know HIV status than stubbornly low uptake figures from the past would suggest. Integrating VCT into other services, locating testing centres in less visible surroundings, or directly confronting stigma surrounding testing may be less expensive ways to reproduce increased uptake with home VCT.     

‘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.     

Stigma by association: the effects of caring for HIV/AIDS patients in South Africa

The shortage of healthcare workers caring for South Africa's 5-6 million persons living with HIV/AIDS (PLHA) calls for inquiry into workers' challenges and experiences. This exploratory study examines one little-studied challenge: stigmatisation of HIV/AIDS healthcare workers based on their association with PLHA. The authors tested the hypotheses that HIV/AIDS healthcare workers experience stigmatisation due to their association with PLHA, and that such association stigma is correlated with thoughts of leaving the HIV/AIDS field. A sample of 100 participants who provided direct care to PLHA was recruited from a variety of public and private HIV/AIDS care centres in Eastern Cape province, South Africa. Participants attended one of 12 focus groups held between June and August, 2008. They completed a 17-item questionnaire and discussed each item. Findings exhibit the presence of an adverse differentiation and labelling of HIV/AIDS healthcare workers, leading to status loss and discrimination, creating an impetus for HIV/AIDS healthcare workers to leave AIDS work altogether. A significant relationship (χ(2) (TREND) = 3.86, df = 1, P = 0.049) was found between contemplation of leaving AIDS work and perception of others' responses to their work with PLHA. In addition, associations emerged between type of AIDS worker and contemplation of working in AIDS care outside of South Africa (Kruskal-Wallis χ(2) = 6.96, df = 2, P = 0.031), with doctors and nurses reporting higher frequency of contemplating leaving South Africa to work with PLHA elsewhere (Mann-Whitney z = -2.53, P = 0.011). The study lays the foundation for additional research on the effects of association stigma. In turn, increased efforts to retain and recruit new HIV/AIDS healthcare workers will expand the pool of healthcare personnel to PLHA.     

Gender-based violence and HIV sexual risk behavior: Alcohol use and mental health problems as mediators among women in drinking venues, Cape Town

Gender-based violence is a key determinant of HIV infection among women in South Africa as elsewhere. However, research has not examined potential mediating processes to explain the link between experiencing abuse and engaging in HIV sexual risk behavior. Previous studies suggest that alcohol use and mental health problems may explain how gender-based violence predicts sexual risk. In a prospective study, we examined whether lifetime history of gender-based violence indirectly affects future sexual risk behavior through alcohol use, depression and post-traumatic stress disorder (PTSD) in a high-risk socio-environmental context. We recruited a cohort of 560 women from alcohol drinking venues in a Cape Town, South African township. Participants completed computerized interviews at baseline and 4 months later. We tested prospective mediating associations between gender-based violence, alcohol use, depression, PTSD, and sexual risk behavior. There was a significant indirect effect of gender-based violence on sexual risk behavior through alcohol use, but not mental health problems. Women who were physically and sexually abused drank more, which in turn predicted more unprotected sex. We did not find a mediated relationship between alcohol use and sexual risk behavior through the experience of recent abuse or mental health problems. Alcohol use explains the link between gender-based violence and sexual risk behavior among women attending drinking venues in Cape Town, South Africa. Efforts to reduce HIV risk in South Africa by addressing gender-based violence must also address alcohol use.     

The emergence and evolution of HIV counselling in Zambia: a 25-year history

HIV-related counselling practices have evolved since emerging in Zambia in 1987. Whereas, initially, the goal of HIV counselling was to provide psychological support to the dying and their families, as knowledge about HIV grew, counselling objectives expanded to include behavioural change, encouraging safer sexual practices, encouraging disclosure, convincing people to test, treatment adherence and shaping HIV-positive people's sexual and reproductive choices. This paper highlights a number of key shifts in counselling practices in Zambia over the last 25 years, demonstrating the relationship between those shifts, changes in medical technology, (inter)national political will and the epidemiological maturity of the disease.     

"Life is still going on": reproductive intentions among HIV-positive women and men in South Africa

This article reports on qualitative research investigating HIV positive individuals' reproductive intentions and their influencing factors in Cape Town, South Africa. In-depth interviews were held with 61 HIV positive women and men; at the time of interview, half had been receiving antiretroviral treatment (ART) for over 6 months and half were not receiving ART. Being HIV positive modified but did not remove reproductive desires, and diversity existed in reproductive intentions. Some HIV positive individuals wished to avoid pregnancy. Fears of partner and infant infection and having a previously infected baby were important factors deterring some individuals from considering having children. There was also strongly perceived community disapproval associated with HIV and reproduction. Strong desires to experience parenthood, mediated by prevailing social and cultural norms that encouraged childbearing in society more broadly, were reported by others. Motherhood was an important component of married women's identity and important for women's social status. Family, husbands' and societal expectations for childbearing were important influences on women's reproductive intentions, for some counterbalancing HIV as a factor discouraging reproduction. There was evidence that prevention of perinatal transmission programs in combination with ART may alter women and men's attitudes in favour of childbearing. Most HIV positive women had not discussed their reproductive desires and intentions with health care providers in HIV care or general health services because of anticipated negative reactions. The few who had done so perceived the counselling environment to be mostly unsupportive of open discussion on these issues. The findings highlight the need for explicit policies recognizing reproductive rights and choice. They support the need for health counselling and service interventions that advance safer and healthier reproductive options for HIV positive individuals in this region of the world which is experiencing a generalised and advanced HIV/AIDS pandemic.     

HIV and AIDS-related stigma in the context of family support and race in South Africa

Objectives. In this paper, we describe the first phase of a research project designed to quantify the role of race and cultural identity in HIV-related stigma. The ultimate purpose is to develop an intervention that could be implemented in Black and Colored communities in Cape Town, South Africa.

Design. The PEN-3 model provided the theoretical basis for this research. A total of 397 Black and Colored participants were recruited from two communities to complete a 16-item multi-part questionnaire that was developed based on focus groups and key informant interviews. A total of 196 questionnaires were administered in Mitchell's Plain and 201 were administered in Gugulethu. Both communities are located approximately 20 km outside the city of Cape Town in an area known as the Cape Flats. Data were collected on individuals' perceptions of stigma in the contexts of the family, healthcare settings, and the community. However, only the family context is explored here. Participants were also asked to identify what they felt should be the most important area of emphasis for researchers in eliminating stigma. Similarities and differences in perceptions between Black and Colored South Africans were examined.

Results. Data were compiled on the family support domain of stigma. Though most either disagreed or were neutral, nearly equal numbers of Blacks and Coloreds thought stigma occurred in families. Blacks were also more likely than Coloreds to report experiencing stigma in their families. Both Blacks and Coloreds felt the family should be the most important focus of interventions for eliminating HIV-related stigma.

Conclusion. Within the context of the family race, cultural values, and religious and spiritual values all contribute to HIV stigma in South Africa. Interventions should address the role of stigma within families in order to promote better HIV prevention, treatment, and care.     

The impact of paraprofessional home visitors on infants’ growth and health at 18 months

Paraprofessional home visitors trained to improve multiple outcomes (HIV, alcohol, infant health and malnutrition) have been shown to benefit mothers and children over 18 months in a cluster randomised controlled trial. These longitudinal analyses examine the mechanisms which influence child outcomes at 18 months post-birth in Cape Town, South Africa. The results were evaluated using structural equation modelling, specifically examining the mediating effects of prior maternal behaviours and a home visiting intervention post-birth. Twelve matched pairs of neighbourhoods were randomised within pairs to: (1) the control condition, receiving comprehensive health care at community primary health care clinics (n = 12 neighbourhoods; n = 594 pregnant women), or (2) the Philani Intervention Program, which provided home visits by trained, paraprofessional community health workers, here called Mentor Mothers, in addition to clinic care (n = 12 neighbourhoods; n = 644 pregnant women). Recruitment of all pregnant neighbourhood women was high (98%) with 88% reassessed at 6 months and 84% at 18 months. Infants’ growth and diarrhoea episodes were examined at 18 months in response to the intervention condition, breastfeeding, alcohol use, social support and low birth weight, controlling for HIV status and previous history of risk. We found that randomisation to the intervention was associated with a significantly lower number of recent diarrhoea episodes and increased rates and duration of breastfeeding. Across both the intervention and control conditions, mothers who used alcohol during pregnancy and had low birth weight infants were significantly less likely to have infants with normal growth patterns, whereas social support was associated with better growth. HIV infection was significantly associated with poor growth and less breastfeeding. Women with more risk factors had significantly smaller social support networks. The relationships among initial and sustained maternal risk behaviours and the buffering impact of home visits and social support are demonstrated in these analyses.     

Male and female genital cutting among Southern Thailand's Muslims: rituals,biomedical practice and local discourses

This paper explores the manifestation of HIV‐related stigma in seven‐ and eight‐year‐old white South African children's responses to HIV and AIDS. Drawing from elements of ethnographic and interview data, it shows how young children's responses to HIV and AIDS are inscribed within popular accounts of contagion and articulate gendered, sexual, raced and classed discourses in South Africa. Rejecting static accounts of stigma, the paper shows how children resist and confirm power inequalities involving intense self‐regulation as well as inscribing within discourses of care and concern for others infected with HIV and AIDS. The findings have implications for scaling up educational efforts to address awareness of HIV and AIDS and stigma, but also to build on positive insights that young children demonstrate with regard to the disease.