A critical ethnography of HIV-positive women attending public health care facilities in Gauteng

Women living with HIV have a variety of reproductive health and psychosocial needs. The purpose of this critical ethnographic study was to examine how HIV, empowerment and reproduction are experienced by a volunteer sample of HIVpositive women attending public health care facilities in Gauteng. Feminist and critical approaches were used to guide the methodology of the research and the interpretation of the findings. Data were collected through in-depth interviews and observation. An overview of literature pertaining to the social construction of HIV-AIDS, women’s empowerment and reproductive decision-making is presented. A discourse of “healthy lifestyle” as technologies of the self is considered. Women’s empowerment as an ideal is described and structural barriers to its achievement are discussed. Stigma and discrimination as products of hegemony are discussed as important issues in the disempowerment of women living with HIV. HIV-AIDS as illness experience is reviewed with reference to the social context and to the individual context. Reproductive decision-making models and theories are critically analysed for their applicability to women living with HIV. The need for a conceptual shift in the notion of empowerment in order to understand constrained decision-making for women living with HIV is propagated. The stories of women living with HIV and dependent on public health care services are presented. Through the principles of a critical ethnography the lived experiences of these women are described by means of emerging themes. A historiography of family planning and HIV-AIDS services throws the narrations of the research participants into broader historic relief. Findings revealed that biomedical hegemonic power contoured and marked the lived experiences of women following an HIV-positive diagnosis. Taken-for-granted views of passivity and of own responsibilities regarding reproductive health are challenged. The women in the study were dependent upon public health care personnel for treatment, testing, dietary advice/supplementation and recommendations for a social xii disability grant. ARV-treatment was regarded as a low point in the illness career. All of the participants reported that the overriding problems in their lives were having too few material resources and not having the means to change this. This made them vulnerable to compounded health problems and decreased their ability to voice their own opinions about treatment. They did not regard themselves as having been at risk for contracting HIV and some harboured resentment towards men who were seen as being absolved from testing and responsibilities towards female partners, born and unborn children. Women who were not tested as part of antenatal sentinel groups tended to suffer symptoms of ill health for some time prior to being tested for HIV. Social support systems were either absent or consisted of trusted family members and friends. In many cases, women became the silent care-givers for those affected and infected by HIV. Anticipated stigma permeated the participants’ narrations of living with HIV and disclosure of their statuses was difficult. The use of male condoms, stressed during counselling sessions, was narrated as a difficult burden for women to bear. Although the research participants expressed low fertility preferences, HIV-AIDS was seen as disrupting the link between heterosexual conjugal relations and the taken-for-grantedness of procreation. HIV-AIDS also disrupted norms in infant feeding practices and bottle-feeding was regarded as a sign of possible HIV-infection and hidden. The research participants were not empowered with knowledge about how to deal with side-effects, condom failures and the reluctance of male partners to be tested for HIV. They enacted, resisted and lived with HIV in different ways, incorporating some of the biomedically prescribed posturing as women living positively and blending it with stigma-negating performances and gender-prescribed ways of dressing, walking and acting. Participation in a support group validated their experiences and promoted positive self-perception. The formation of a collective voice in the support group was hampered by irregular attendance, the interference of community leaders and horizontal violence. Power relations, yielded by biomedical hegemony, androcentric sociocultural practices, material deprivation, fear, discrimination and stigma potentially undermined the women’s abilities to become empowered. Expansion of choices in various spheres or fields and collective action xiii are proposed as dimensions to be added to an empowerment-of-women approach to the problems of reproductive health in the age of HIV-AIDS. The contribution of the study as an emancipatory project is evaluated and implications for policy and practice are suggested. On a methodological level, this study is a demonstration of the contribution to be made by a micro-level, critical analysis to the body of knowledge about female reproductive health in the era of HIV-AIDS in South Africa. On a theoretical level, this study contributes to a wider conceptualisation of women’s empowerment by recognising the interplay between micro-level elements of situated experience, knowledge and preferences and the macro-level elements of sociocultural, biomedical and material influences on health and reproductive behaviou