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

[摘要] Statistics show that young, heterosexual, low-income women are the fastest growing HIVinfectedpopulation in South Africa and in the rest of the world. Despite the rapidlygrowing numbers of women with HIV (human immunodeficiency virus) and AIDS (acquiredimmune deficiency syndrome), there is a scarcity of research that focuses primarily on howpoor minority and disadvantaged women of colour experience being HIV-positive, howthese women actually live and cope with their diagnosis. Furthermore, no research studieson minority groups, such as the Coloured women in the Western Cape, exploring theseissues have been reported. Consequently, there is an urgent need for research studies inSouth Africa to explore the range of discourses revealed by low-income and minoritywomen regarding their lives and experiences of HIV/AIDS, in order to generateunderstanding and knowledge which could contribute to possible interventions, supportand care.The present study aimed to: 1) explore the psychosocial concerns and mental health needsof HIV-infected low-income Coloured mothers in everyday life; 2) construct a testableGrounded Theory regarding the illness experience of low-income Coloured mothers; and 3)recommend guidelines for health workers. The study was a systematic analysis anddocumentation of how the illness (HIV/AIDS) was constructed in narratives of oneparticular group of women in South Africa.Eleven suitable and willing HIV-infected Coloured mothers were recruited by means ofconvenience and theoretical sampling. The research study was conducted within a socialconstructionistframework where the focus was on how HIV-infected, low-income Colouredwomen make sense of their world and illness experience. Grounded Theory was appliedwithin the framework of qualitative research to analyse the data and to explore theparticipants' constructions of the illness. As qualitative measure, a semi-structured in-depthinterview schedule was developed according to Grounded Theory protocol. To reach theaims of the present study, questions focused on specific behaviours, experiences, thoughtsand feelings that related to living with a positive HIV-diagnosis. In the participants' accounts of their illness experience, two dominant discourses wereidentified: a discourse of HIV/AIDS, within which the illness was constructed as anstigmatised, incurable and deadly illness; as a shameful illness that someone should beblamed 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 'goodwoman/mother; constructed as someone that should primarily take care of her childrenand family, and not be separated from them, or neglect or abandon them through illnessor 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 (astigmatised, incurable, and deadly illness, a shameful and blameworthy illness, an illness ofsecrecy, silence, separation, pain and suffering, loss, and loneliness), and the imperativesof mothering, what it means to be a 'good woman/mother (the primary caregiver ofchildren, someone who is connected, physically strong, healthy and productive, andsomeone who is able to cope with her caregiving responsibilities even when in distressherself) 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 thepresent study severe psychological distress and suffering. Given these discourses and thecontext of the participants' lives within their specific socio-economic circumstances, namelytheir lack of emotional and social support from friends and family, abusive relationships,substance abuse, economic hardships, absence of treatment options, as well as theirexperience of an incapacitating, incurable, stigmatised illness causing them severe physicaland psychological distress, it was argued that the majority of the participants in thepresent study were in some state of depression and were in need of psychosocial supportand mental healthcare.

[发布机构] Stellenbosch University