The illness experience of HIV-infected low-income Coloured mothers in the Winelands region : theoretical and practical implications

Herbst, Elsa (2006-03)

Thesis (DPhil (Psychology))—University of Stellenbosch, 2006.


Statistics show that young, heterosexual, low-income women are the fastest growing HIVinfected population in South Africa and in the rest of the world. Despite the rapidly growing numbers of women with HIV (human immunodeficiency virus) and AIDS (acquired immune deficiency syndrome), there is a scarcity of research that focuses primarily on how poor minority and disadvantaged women of colour experience being HIV-positive, how these women actually live and cope with their diagnosis. Furthermore, no research studies on minority groups, such as the Coloured women in the Western Cape, exploring these issues have been reported. Consequently, there is an urgent need for research studies in South Africa to explore the range of discourses revealed by low-income and minority women regarding their lives and experiences of HIV/AIDS, in order to generate understanding and knowledge which could contribute to possible interventions, support and care. The present study aimed to: 1) explore the psychosocial concerns and mental health needs of HIV-infected low-income Coloured mothers in everyday life; 2) construct a testable Grounded Theory regarding the illness experience of low-income Coloured mothers; and 3) recommend guidelines for health workers. The study was a systematic analysis and documentation of how the illness (HIV/AIDS) was constructed in narratives of one particular group of women in South Africa. Eleven suitable and willing HIV-infected Coloured mothers were recruited by means of convenience and theoretical sampling. The research study was conducted within a socialconstructionist framework where the focus was on how HIV-infected, low-income Coloured women make sense of their world and illness experience. Grounded Theory was applied within the framework of qualitative research to analyse the data and to explore the participants’ constructions of the illness. As qualitative measure, a semi-structured in-depth interview schedule was developed according to Grounded Theory protocol. To reach the aims of the present study, questions focused on specific behaviours, experiences, thoughts and feelings that related to living with a positive HIV-diagnosis. In the participants’ accounts of their illness experience, two dominant discourses were identified: a discourse of HIV/AIDS, within which the illness was constructed as an stigmatised, incurable and deadly illness; as a shameful illness that someone should be blamed for; and as being associated with secrecy, silence, separation, pain and suffering, loss, and loneliness, as well as a discourse of mothering, what it means to be a “good” woman/mother; constructed as someone that should primarily take care of her children and family, and not be separated from them, or neglect or abandon them through illness or death. It is suggested that the two dominant discourses found in the participants’ accounts of their illness experiences, namely the meaning of HIV/AIDS as an illness (a stigmatised, incurable, and deadly illness, a shameful and blameworthy illness, an illness of secrecy, silence, separation, pain and suffering, loss, and loneliness), and the imperatives of mothering, what it means to be a “good” woman/mother (the primary caregiver of children, someone who is connected, physically strong, healthy and productive, and someone who is able to cope with her caregiving responsibilities even when in distress herself) are irreconcilable. It seems that these distressing and disempowering experiences of being HIV-infected, while also being a primary caregiver and mother of children, caused the participants in the present study severe psychological distress and suffering. Given these discourses and the context of the participants’ lives within their specific socio-economic circumstances, namely their lack of emotional and social support from friends and family, abusive relationships, substance abuse, economic hardships, absence of treatment options, as well as their experience of an incapacitating, incurable, stigmatised illness causing them severe physical and psychological distress, it was argued that the majority of the participants in the present study were in some state of depression and were in need of psychosocial support and mental healthcare.

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