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.     

Perceptions of Community HIV Prevalence,Own HIV Infection,and Condom Use among Teachers in KwaZulu-Natal,South Africa

A total of 120 teachers from KwaZulu-Natal, South Africa, underwent HIV/AIDS training. As part of the study, the teachers were surveyed, before and after the training, about their perceptions of HIV prevalences among pupils, other teachers, and community members, and about their perceptions of their own HIV status. Before the training, the teachers estimated average HIV prevalences among pupils, other teachers, and other community members to be 36%, 48%, and 61%, respectively. One-third of the teachers believed that they had a 50% or greater chance of currently being infected with HIV. Male teachers and teachers with a university degree gave lower HIV prevalence estimates for other people but not for themselves. Frequency of condom use was positively related to teachers’ HIV prevalence estimates for other people. Teachers’ estimates of HIV prevalence and perceived risk of own HIV infection increased significantly after the HIV/AIDS training.     

Women's health,HIV/AIDS and the workplace in South Africa

This work explores the connections between gender inequality, HIV/AIDS and women's health in the world of work in South Africa. These connections are located within a context of significant reversals in development, specifically declining life expectancy and premature mortality for South Africans — particularly for women. By relying on the existing literature and interviews with 33 key informants, the paper examines the extent to which South African workplaces are recognising women's social and biological vulnerability to HIV. In particular, the paper considers the potential role of the workplace in responding to growing evidence that links gender and health by establishing targeted HIV/AIDS interventions. The findings suggest that the vast majority of company representatives do not recognise women's social and biological vulnerability and related social norms vis-à-vis HIV and AIDS. Importantly, most workplaces are not initiating programmes that specifically address women's or men's health. The author briefly identifies factors that may help explain the current state of knowledge and practice in the realm of HIV and women's health in the workplace, and puts forward suggestions for future research.     

The influence of antiretroviral treatment on willingness to test: a qualitative study in rural KwaZulu-Natal,South Africa

Previous quantitative studies suggest a mutually reinforcing relationship between HIV counselling and testing (HCT) and antiretroviral treatment (ART). HCT is the entry into ART, and access to ART appears to increase HIV-testing uptake in settings with historically low uptake. Adopting a qualitative approach, this study examined the influence of ART on willingness to test for HIV, in a rural community in South Africa. Ninety-six in-depth interviews from a large community-based HIV-prevention trial were analysed. The data provide insight into the community members’ views, perceptions and experiences regarding ART, and how they draw on these in making decisions about HIV testing. Several key factors that supported a positive relationship between ART and HIV testing were noted. These included the beliefs that ART brings hope and that it prolongs life; the powerful positive effect of witnessing the recovery of someone on treatment; and that ART encourages early HIV-testing behaviour. A few negative factors that could potentially weaken the effects of this positive relationship between ART and HCT uptake were the disclosure difficulties experienced by those enrolled in treatment, beliefs that ART does not cure HIV disease, and the travel distance to testing and treatment facilities from where people live and work. HIV/AIDS-service providers and programme planners should actively draw on these observations, to encourage increased HIV testing in communities and to ensure that the maximum number of people get the HIV treatment and care services that they require.     

A Controlled Study of an HIV/AIDS/STI/TB Intervention with Traditional Healers in KwaZulu-Natal, South Africa

Traditional healers play an important role in southern Africa culture and health care including the HIV epidemic. Here we report among the first controlled studies of an HIV/AIDS, sexually transmitted infections (STI) and tuberculosis (TB) intervention for traditional healers in South Africa. At baseline 233 traditional healers were assessed in four selected communities in the KwaZulu-Natal province and received either an experimental intervention or a no intervention control condition. The intervention group received training in HIV/AIDS, STI, and TB prevention over 3.5 days as well as a supervisory follow-up visit. At 7–9 months follow-up intervention effects were significant for HIV knowledge and HIV and STI management strategies including conducting risk behavior assessments and counseling, condom distribution, community HIV/AIDS and STI education, and record keeping. The study found a high level of preparedness among traditional healers to work with and refer patients to biomedical health practitioners, yet no higher levels of referral to biomedical practitioners were found after the training.     

Sex,disease and stigma in South Africa: historical perspectives

This paper attempts to analyse historically why stigma and denial around HIV/AIDS is so powerful in South Africa, so powerful that ailing family members can be shunned and evicted. For many observers, the answer lies simply in its being a venereal disease, in its connotation with promiscuity and unregulated sexuality. We argue that this is not an adequate explanation. Pre-colonial African societies were relatively open about sexuality. Though pre-marital and adulterous pregnancy certainly caused social disruption, extra-marital sex per se was not stigmatised. Even the sexual shame introduced (unevenly) by Christianity and its hybridised forms is inadequate in explaining the degree of stigma associated with HIV/AIDS. We extend the discussion by exploring the stigma associated with various forms of pollution and the inevitability of death. The peculiarly interwoven mixture of sexual transgression, pollution and delayed death, we argue, makes HIV/AIDS an extraordinarily powerful generator of stigma.     

The social construction of identity in HIV/AIDS home-based care volunteers in rural KwaZulu-Natal,South Africa

Home-based care volunteer (HBCV) identity and how it is shaped was the main focus of the study. Fifteen HBCVs were interviewed about their work and personal life stories and then interviewed reflectively using a narrative interviewing style. Specific attention was paid to contextual meta-narratives and social field narratives in understanding the women's stories. Findings indicate that social field narratives of the women's stories were dominated by negative aspects of gender, poverty and socio-political factors. These were seen to coincide with the ‘feminisation of responsibility’ in this context effectively coercing the women into agency which manifested as their home-based care work. Meta-narratives influencing the women's lives were dominated by stories of communal motherhood, aspirations to service-oriented work and religious beliefs and commitment. The question of how it is possible for women who are seemingly constrained by oppressive narratives to voluntarily engage in community participation was answered in the women's personal life stories about being compassionate, hopeful, helpful and ambitious and having initiative. These characteristics collectively pointed to personal agency. Exploring connections between the different aspects of identity and context revealed that the women made sense of their community participation through their personal identities as strong and loving mothers. Connections between volunteer personal identity, agency and volunteer group identity were explored to make sense of the link between HBCV identity and volunteerism. The mother identity, encompassing personal agency (strength or power) and love (the meta-narrative of communal motherly love), was salient in influencing community participation of the group.     

Poverty and HIV/AIDS in South Africa: an empirical contribution

This study sets out to establish and explain the empirical link between HIV/AIDS and poverty using data collected by the 1998 South African Demographic and Health Survey (SADHS). Analysis is restricted to women of reproductive age (15 – 49 years). The results indicate an increased risk of HIV infection among the poor, due to poverty-related characteristics of low education and low knowledge of the means of avoiding HIV infection, as opposed to the non-poor. Moreover, the poor and the less educated were found to be more likely not to use condoms than the non-poor. The results do not, however, provide the reasons for these relations and as such further research is required. One possible explanation was financial dependence on their partners, as it was found that women who received money from their partners, as well as those who came from households where hunger was a common phenomenon, were more likely not to use condoms because their partners disliked condoms, than those who did not receive money from their partners. The results also hinted at the intricacy of the poverty-HIV/AIDS relationship, so that it was not only low socio-economic status that increased susceptibility to HIV infection but also high socio-economic status.     

Acceptability and feasibility of a financial incentive intervention to improve retention in HIV care among pregnant women in Johannesburg,South Africa

Women initiating antiretroviral therapy during pregnancy are at high risk of dropping out of HIV care after delivery. We assessed the acceptability and feasibility of a financial incentive – a one-time R50 (～USD4) supermarket voucher for completing one postpartum visit ≤10 weeks of delivery – to improve postpartum retention. We enrolled 100 pregnant, HIV-positive women at a primary health clinic in Johannesburg, South Africa. Participants were interviewed at enrollment and we reviewed files to assess retention ≥14 weeks postpartum. Median (IQR) respondent age was 28 years (24–31) and 31% were employed. Most (86%) said the incentive would motivate them to return and 76% supported clinics offering incentives. Among the 23% who found the intervention unacceptable, the most frequent reason was perceived personal responsibility for health. Feasibility was demonstrated, as 79.7% (51/64) of eligible participants received a voucher. When asked to rank preferred hypothetical incentive interventions, assistance with social services ranked first (29%), followed by infant formula (22%) and cash (21%); assistance with social services was the top-ranked choice by both those who found the voucher incentive intervention acceptable and unacceptable. To encourage HIV-positive women to remain in care, respondents most frequently suggested health education (34%), counseling (29%), financial incentives (25%), home visits (13%), and better service (6%). Our results suggest financial incentives are acceptable, but women frequently expressed preference for integrated services and improved education and counseling to improve retention. Interventions exploring the feasibility and efficacy of education and counseling interventions to improve postpartum HIV care are warranted.     

Disclosure of HIV serostatus among pregnant and postpartum women in sub-Saharan Africa: a systematic review

Disclosure of one's HIV status can help to improve uptake and retention in prevention of mother-to-child transmission of HIV services; yet, it remains a challenge for many women. This systematic review evaluates disclosure rates among pregnant and postpartum women in sub-Saharan Africa, timing of disclosure, and factors affecting decisions to disclose. PubMed and EMBASE databases were searched to identify relevant studies published between January 2000 and April 2014. Rates of HIV serostatus disclosure to any person ranged from 5.0% to 96.7% (pooled estimate: 67.0%, 95% CI: 55.7%–78.3%). Women who chose to disclose their status did so more often to their partners (pooled estimate: 63.9%; 95% CI: 56.7%–71.1%) than to family members (pooled estimate: 40.1; 95% CI: 26.2%–54.0%), friends (pooled estimate: 6.4%; 95% CI: 3.0%–9.8%), or religious leaders (pooled estimate: 7.1%; 95% CI: 4.3%–9.8%). Most women disclosed prior to delivery. Decisions to disclose were associated with factors related to the woman herself (younger age, first pregnancies, knowing someone with HIV, lower levels of internalized stigma, and lower levels of avoidant coping), the partner (prior history of HIV testing and higher levels of educational attainment), their partnership (no history of domestic violence and financial independence), and the household (higher quality of housing and residing without co-spouses or extended family members). Interventions to encourage and support women in safely disclosing their status are needed.     

Efficacy of a lay health worker led group antiretroviral medication adherence training among non-adherent HIV-positive patients in KwaZulu-Natal,South Africa: Results from a randomized trial

There is a lack of theory-based randomized controlled trials to examine the effect of antiretroviral adherence in sub-Saharan Africa. We assessed the effectiveness of a lay health worker lead structured group intervention to improve adherence to antiretroviral therapy (ART) in a cohort of HIV-infected adults. This two-arm randomized controlled trial was undertaken at an HIV clinic in a district hospital in South Africa. A total of 152 adult patients on ART and with adherence problems were randomized 1:1 to one of two conditions, a standard adherence intervention package plus a structured three session group intervention or to a standard adherence intervention package alone. Self-reported adherence was measured using the Adult AIDS Clinical Trials Group adherence instrument prior to, post intervention and at follow-up. Baseline characteristics were similar for both conditions. At post-intervention, adherence information knowledge increased significantly in the intervention condition in comparison to the standard of care, while adherence motivation and skills did not significantly change among the conditions over time. There was a significant improvement in ART adherence and CD4 count and a significant reduction of depression scores over time in both conditions, however, no significant intervention effect between conditions was found. Lay health workers may be a useful adjunct to treatment to enhance the adherence information component of the medication adherence intervention, but knowledge may be necessary but not sufficient to increase adherence in this sample. Psychosocial informational interventions may require more advanced skill training in lay health workers to achieve superior adherence outcomes in comparison standard care in this resource-constrained setting.     

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.     

Stigma,identity and resistance among people living with HIV in South Africa

AIDS-related stigma can cause delays in testing, poor treatment adherence, and greater numbers of new infections. Existing studies from low- and middle-income countries focus on the negative experiences of stigma, and few document resistance strategies. In this article we document the diverse journeys of people living with HIV in South Africa, through ill health, testing, disclosure, and treatment, and their responses to stigma. The research questions of focus are: Why are some able to resist stigma despite poverty and gendered oppression, whereas others are not? Why are some people able to reach closure, adapting to diagnosis, prognosis and finding a social context within which they resist stigma and can live with their illness? The illness narratives reported here show that the ability to resist stigma derives from a new role or identity with social value or meaning. Generation of a new role requires resources that are limited due to poverty, and exacerbated by unstable family relations. People who are socially marginalised have fewer opportunities to demonstrate their social value, face the greatest risk of transmission, re-infection and failure to adhere to medication, and require particular support from the health sector or community groups.     

Positive parenting for positive parents: HIV/AIDS,poverty, caregiver depression,child behavior,and parenting in South Africa

Families affected by HIV/AIDS in the developing world experience higher risks of psychosocial problems than nonaffected families. Positive parenting behavior may buffer against the negative impact of child AIDS-orphanhood and caregiver AIDS-sickness on child well-being. Although there is substantial literature regarding the predictors of parenting behavior in Western populations, there is insufficient evidence on HIV/AIDS as a risk factor for poor parenting in low- and middle-income countries. This paper examines the relationship between HIV/AIDS and positive parenting by comparing HIV/AIDS-affected and nonaffected caregiver-child dyads (n=2477) from a cross-sectional survey in KwaZulu-Natal, South Africa (27.7% AIDS-ill caregivers; 7.4% child AIDS-orphanhood). Multiple mediation analyses tested an ecological model with poverty, caregiver depression, perceived social support, and child behavior problems as potential mediators of the association of HIV/AIDS with positive parenting. Results indicate that familial HIV/AIDS's association to reduced positive parenting was consistent with mediation by poverty, caregiver depression, and child behavior problems. Parenting interventions that situate positive parenting within a wider ecological framework by improving child behavior problems and caregiver depression may buffer against risks for poor child mental and physical health outcomes in families affected by HIV/AIDS and poverty.     

HIV knowledge,disclosure and sexual risk among pregnant women and their partners in rural South Africa

Abstract

Partner involvement has been deemed fundamental for the prevention of mother-to-child transmission (PMTCT) of HIV, although it remains difficult to achieve. This study aimed to explore the attitudes and behaviours of pregnant women and their partners who participated in a behavioural risk reduction intervention in six community health centres in the Mpumalanga province of South Africa. Qualitative methods only were used in this study. Women and their partners took part in four gender-concordant groups that addressed HIV, PMTCT, disclosure of HIV status and safer sex practices. The results indicate that men value and understand the importance of being involved in women's reproductive health, although some components of the PMTCT programme such as condom use were still met with some resistance. Participants demonstrated high levels of HIV- and sexually transmitted infection-related knowledge. Men lacked knowledge about PMTCT but were interested in acquiring information so that they could support their partners. All groups highlighted the emotional and physical benefits of disclosing one's HIV status. The involvement of men in antenatal care has the potential to prevent women from becoming infected with HIV both during pregnancy and post-partum when they are more vulnerable to infection and have a high risk of transmission to the infant. There is a need for interventions that focus on both increasing male involvement and promoting condom use during pregnancy.     

Social support and mental health among adults prior to HIV counseling and testing in Durban,South Africa

Poor social support and mental health may be important modifiable risk factors for HIV acquisition, but they have not been evaluated prior to HIV testing in South Africa. We sought to describe self-perceived mental health and social support and to characterize their independent correlates among adults who presented for voluntary HIV testing in Durban. We conducted a large cross-sectional study of adults (≥18 years of age) who presented for HIV counseling and testing between August 2010 and January 2013 in Durban, South Africa. We enrolled adults presenting for HIV testing and used the Medical Outcomes Study’s Social Support Scale (0 [poor] to 100 [excellent]) and the Mental Health Inventory (MHI-3) to assess social support and mental health. We conducted independent univariate and multivariable linear regression models to determine the correlates of lower self-reported Social Support Index and lower self-reported MCH scores. Among 4874 adults surveyed prior to HIV testing, 1887 (39%) tested HIV-positive. HIV-infected participants reported less social support (mean score 66 ± 22) and worse mental health (mean score 66 ± 16), compared to HIV-negative participants (74 ± 21; 70 ± 18; p < 0.0001). In a multivariable analysis, significant correlates of less social support included presenting for HIV testing at an urban hospital, not having been tested previously, not working outside the home, and being HIV-infected. In a separate multivariable analysis, significant correlates of poor mental health were similar, but also included HIV testing at an urban hospital and being in an intimate relationship less than six months. In this study, HIV-infected adults reported poorer social support and worse mental health than HIV-negative individuals. These findings suggest that interventions to improve poor social support and mental health should be focused on adults who do not work outside the home and those with no previous HIV testing.     

The Farmer Life School: experience from an innovative approach to HIV education among farmers in South Africa

The Farmer Life School (FLS) is an innovative approach to integrating HIV education into life skills and technical training for farmers. This study aims to gain insight into the strengths and weaknesses of this relatively new approach, through the implementation of an adapted version in South Africa. The results are presented of a pilot with three groups of community gardeners, predominantly women, attending weekly sessions. Impact was assessed in terms of three key elements: participation, learning, and empowerment. Data were collected through extensive session reports, follow-up interviews, and reflection exercises with facilitators and participating groups and individuals. The results suggest that a group-based discovery learning approach such as the FLS has great potential to improve food security and wellbeing, while allowing participants to explore issues around HIV/AIDS. However, the analysis also shows that HIV/AIDS-related illness and death, and the factors that drive the epidemic and its impact, undermine farmers' ability to participate, the safety and trust required for learning, and the empowerment process. Participatory approaches such as the FLS require a thorough understanding of and adaptation to the context.     

Silent survivors of sexual violence in conflict and the implications for HIV mitigation: experiences from Eritrea

This paper considers the impacts of sexual violence perpetrated while the Eritrean town of Senafe was occupied by the Ethiopian military in 2000, during the second Ethiopia–Eritrea war. It discusses the aftermath for the survivors, all women and girls belonging to the Saho ethnic group, and the responses of other groups in the Saho community. An attempt is made to understand the reasons for the failure of one intervention that sought to provide support to these survivors of sexual violence. The potential repercussions of community denial of the sexual violence are addressed. These include lack of access by survivors to information on HIV, testing and care; refusal to face up to the possible infection of survivors, their husbands and unborn children, and to the psychological, social and economic impacts of HIV/AIDS.     

Sexual behavior and HIV risk across the life course in rural South Africa: trends and comparisons

There is limited information about sexual behavior among older Africans, which is problematic given high HIV rates among older adults. We use a population-based survey among people aged 15–80+ to examine the prevalence of sexual risk and protective behaviors in the context of a severe HIV epidemic. We focus on variation across the life course, gender and HIV serostatus to compare the similarities and differences of young, middle aged, and older adults. Younger adults continue to be at risk of HIV, with potential partners being more likely to have been diagnosed with an STI and more likely to have HIV, partner change is high, and condom use is low. Middle aged and older adults engage in sexual behavior that makes them vulnerable at older ages, including extramarital sex, low condom use, and cross-generational sex with people in age groups with the highest rates of HIV. We find insignificant differences between HIV positive and negative adults’ reports of recent sexual activity. This study provides new information on sexual behavior and HIV risk across the life course in rural South Africa to inform HIV prevention and treatment programing.