HIV-Related Stigma among People with HIV and their Families: A Qualitative Analysis

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AIDS and Behavior (Impact Factor: 3.49). 04/2008; 12(2):244-54. DOI: 10.1007/s10461-007-9231-x
Source: PubMed


We examined the interconnectedness of stigma experiences in families living with HIV, from the perspective of multiple family members. Semi-structured interviews were conducted with 33 families (33 parents with HIV, 27 children under age 18, 19 adult children, and 15 caregivers). Parents were drawn from the HIV Cost and Services Utilization Study, a representative sample of people in care for HIV in US. All of the families 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. Interpersonal discrimination seemed to stem from fears of contagion. Findings indicate a need for interventions to reduce HIV stigma in the general public and to help families cope with stigma.

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    • "There is increasing recognition that HIV stigma may present distinct challenges for HIV-positive parents with children (Islam, Scott, & Minichiello, 2014). Research outside Bangladesh has suggested that parents have to cope with their own stigma, while at the same time dealing with social and personal issues associated with stigma due to living within HIV-infected families (Bogart et al., 2008; Cowgill, Bogart, Corona, Ryan, & Schuster, 2008; Guoping, Li, Chunqing, & Sun, 2007). This study examines parents' experiences of stigma and discrimination while living with HIV within families in Bangladesh. "
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    ABSTRACT: 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. 
    Full-text · Article · Aug 2015 · AIDS Care
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    • "Based on the models of disclosure behaviour, it is suggested that an evaluative judgement for the anticipated responses of others is used in the disclosure decision-making process (Serovich et al., 2005; Bogart et al., 2008). Disclosure will only occur if there is anticipation that support will be received from others. "
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    ABSTRACT: HIV disclosure is a complex phenomenon. The choice of disclosure or non-disclosure is a reflection of how each HIV-positive person experiences and deals with HIV/AIDS in their everyday life. In this study, we qualitatively explore the experiences of disclosing HIV status to family members and children among HIV-positive women living in Thailand. Due to fear of stigma and discrimination, the women decided to tell only a few people, usually their significant others including parents and children. Although most women received good support from their family members, some were rejected and discriminated against by their family members. This stems from lack of knowledge about HIV/AIDS among family members. Women found disclosure to their children a difficult decision to make. Only some women told their children about their HIV status. They wished to protect their children from emotional burden. This protection also appeared in their attempts to prepare their children for dealing with HIV/AIDS. Support from family members played a major role in the lives of HIV-positive women. Although disclosure has been promoted as a means of ending stigma and discrimination, our data suggested that disclosure may not be positive for some women. This has implications for health promotion in HIV health care. Healthcare providers need to appreciate the ramifications of promoting disclosure to HIV-positive women who are mothers.
    Full-text · Article · Jul 2014 · Health Promotion International
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    • "Socially, a lack of knowledge of HIV/AIDS especially of how it is transmitted, can lead to fear of contracting the illness by associating with HIV-positive individuals. This lack of knowledge and fear thereby acts to reduce acceptance and increase rejection of HIV-positive individuals (Herek et al., 2002; Sayles et al., 2007; Bogart et al., 2008). For such reasons, many HIV-positive individuals and/or their relatives hide or deny their HIV-positive status, and it is not uncommon for people to attribute illness instead to other conditions such as tuberculosis (TB) (Campbell et al., 2005; Bird & Voisin, 2010; Derlega et al., 2010). "
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    ABSTRACT: In this article, we examine how HIV/AIDS caregivers negotiate stigma in their discourse of providing care to HIV-positive individuals. Using interview data, we demonstrate how participants employed discourse of control in attempting to avoid and counter HIV-related stigma: participants rejected fear of associating with HIV-positive individuals by drawing on their knowledge of HIV transmission and their ability to control and avoid infection. Such discourses backfire, however, as the concept of HIV infection being controllable and thus avoidable maintains accountability for the disease. Thus, participants' micro discourse of control can maintain the macro discourse that produces HIV-related stigma.
    Full-text · Article · Mar 2014 · Journal of Health Psychology
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