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

The caregiver-child relationship has important long-term consequences for children's health and wellbeing. Attachment theorists consider children to have a need for a secure relationship with an adult caregiver for normal social and emotional development to occur [1, 2]. Because orphans and abandoned children (OAC), defined as those who have had one or both parents die or were abandoned by both parents, lack one or more adult caregivers, their healthy development may be compromised.

Caregivers of OAC can contribute to their healthy development. While little research examining the characteristics of OAC caregivers exists, one study considered the reasons caregivers gave for fostering orphans. The authors found that the degree of relatedness to- and financial capacity to care for- an orphan child among the most frequently cited reasons given for caregiving. However, child-level characteristics, like age and gender, were reportedly not considered in the decision to take on the care of an OAC [3]. Most caregivers were found to be female, older, poor, and living without a spouse.

In the face of the HIV/AIDS epidemic that has contributed to the dramatic increase in OAC worldwide [4, 5], caregiver attitudes about HIV is one attribute that may affect the quality of OAC caregiving. Caregiver factors that have been previously associated with positive attitudes toward HIV/AIDS, orphans in general, and AIDS orphans in particular include middle age (35-44), polygamy, belief that there are increasing numbers of orphans in the community, having relatives or friends with HIV/AIDS and caregivers' knowledge regarding HIV/AIDS [6]. Concern about becoming infected with HIV/AIDS, however, also negatively affects willingness to serve as a caregiver to AIDS OAC [3].

When the caregiver or community's attitude toward HIV is negative, this attribute may manifest itself in HIV-related stigma. Stigma has been defined as an attribute that is significantly discrediting [7], which can have concrete material consequences. Research indicates stigma alters life chances, including income, employment, housing access, and health [8, 9]. Experienced stigma can also result in adverse psychosocial consequences, including distress and depression [10–12]. HIV-related stigma is prevalent. In a recent U.S. study with patients drawn from the HIV Cost and Services Utilization Study, all of the families interviewed recounted experiences with stigma, including 100% of mothers, 88% of fathers, 52% of children, 79% of adult children, and 60% of caregivers. About 97% of families described discrimination fears, 79% of families experienced actual discrimination, and 10% of uninfected family members experienced stigma from association with the parent with HIV [13]. Drivers of stigma include fear, availability and relevance of AIDS-related information, lack of social spaces to engage in dialogue about HIV/AIDS, perceived links between HIV/AIDS, sexual moralities and the control of women and young people, inadequate HIV/AIDS management services, and the ways in which poverty shapes people's reactions to HIV/AIDS [14]. Research suggests that stigma, and the resultant discrimination, can exacerbate the material and psychological problems children already face in the context of the HIV/AIDS pandemic [15–18]. Stigma can prevent proper access to education and care, both directly (through abuse, forced labor and inheritance loss) and indirectly (if children avoid potentially stigmatizing situations such as healthcare and educational interactions) [19]. When stigma is manifested in the OAC-caregiver relationship, through hostility, violence, or differential resource allocation, it can have severe negative impacts on children under care. While very little research has previously considered the extent of stigma expressed against children and youth infected with and affected by HIV/AIDS [20], one author reported significant associations between less expressed stigma behavior and higher knowledge of how to support HIV/AIDS infected persons [21].

In light of the dearth of literature considering caregiver attributes and HIV-related stigma, the goal of this paper is to describe HIV-related stigma among caregivers of OAC in five less wealthy nations.

In this paper, we considered two indicators of HIV-related stigma in a sample of nearly 2,000 caregivers of orphans and abandoned children (OAC) in five less wealthy nations: willingness to care for a relative with HIV/AIDS in one's home and willingness to let one's child play with a child who is HIV-infected. Overall, relatively small proportions of caregivers reported HIV-related stigma, with less stigma reported by institution-based caregivers compared to community-based caregivers. More years of formal education was associated with greater caregiver acceptance (less stigma) among all caregivers. Older age and female gender were associated with decreased acceptance among community-based but not institution-based caregivers.

The dramatic increase in the number of OAC worldwide, particularly as a result of the AIDS epidemic, has focused attention on the importance of the caregiving setting and the caregiver-OAC relationship in influencing child outcomes. HIV-related stigma is widespread and could plausibly affect the caregiver-OAC relationship for children infected with or orphaned by HIV. Yet no other literature exploring attributes of OAC caregivers and the relation of those attributes to HIV-related stigma was identified. Recent reviews by UNICEF, Save the Children (UK) and other agencies have underscored this critical gap in the literature. "In spite of ample anecdotal and descriptive evidence that HIV/AIDS-related stigma and discrimination are affecting children, not enough systematic research has been done to illustrate the nature and extent of the problem, and how it relates to other key sources of disadvantage for children in poor, high-prevalence areas" [24]. Recent policy statements have recommended de-emphasizing institution-based care in favor of community-based care settings on the basis that better child care will result [25, 26]; in the present study, however, we found greater acceptance and less reported stigma among institution-based compared to community-based caregivers. If HIV-related stigma affects OAC caregiving, this finding may be important to the ongoing policy discussion.

Reducing stigma and quality HIV care are related. Preliminary data from research in rural Haiti suggest that the introduction of quality HIV care can lead to a rapid reduction in stigma, with resulting increased uptake of testing [27]. Other research suggests that people who live in a context where they see people with HIV/AIDS being treated with kindness and care are far more likely to acknowledge their vulnerability, to seek out information about how to protect themselves or go for voluntary counseling and testing, and to take precautions in their sexual relationships [14]. Therefore, it appears that stigma reduction and HIV care work synergistically to improve prevention and reduce risk.

Our ability to describe the prevalence and predictors of two markers of HIV stigma in a large sample of OAC caregivers from five less wealthy nations is a strength of this study. However, this work is also not without limitations. While caregivers were asked about HIV-related stigma, it is not clear if the OAC they were caring for were HIV-infected or if their parents had died from AIDS or AIDS-related complications. Prior qualitative work has indicated that in many parts of the world, AIDS-related deaths are often not reported as such by family members or friends, who instead may cite other causes of death, such as malaria or diarrhea [14]. We also were not able to examine whether caregivers' reports of HIV-related stigma was associated with differential child outcomes over time. Longitudinal data would shed important light on this question.

The caregiver-child relationship is central to a child's development. OAC already face stigma as a result of their orphaned or abandoned status; OAC affected by HIV, either by virtue of being infected themselves or because they were orphaned due to HIV, face a potential double burden of stigmatization. And many, if not most OAC, are not even aware of their HIV status or the status of their parents. Therefore, caring for OAC often carries with it the uncertainty of the child's status.

Stigma and stigmatization have been linked to reinforcement of social inequalities of class, race, gender, and sexuality [28]. While most caregivers reported willingness, or the absence of stigma, over 25% of caregivers willingly reported on their HIV-related stigma. Further research on the prevalence of HIV-related acceptance and stigma among caregivers, and the implications of such stigma for healthy child development, will be critical as the policy community develops appropriate responses to the global AIDS orphan crisis.