The illness experience of HIV-infected low-income Coloured mothers in the Winelands region : theoretical and practical implications
Date
2006-03
Authors
Herbst, Elsa
Journal Title
Journal ISSN
Volume Title
Publisher
Stellenbosch : University of Stellenbosch
Abstract
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.
Description
Thesis (DPhil (Psychology))—University of Stellenbosch, 2006.
Keywords
HIV-positive women -- South Africa -- Western Cape, AIDS (Disease) -- Psychological aspects, Poor women -- Mental health -- South Africa, AIDS (Disease) in women -- Social aspects -- South Africa, Colored people (South Africa) -- Social conditions, Dissertations -- Psychology, Theses -- Psychology