| Summary: | The purpose of this qualitative research study was to investigate the cultural,
psychological, and social processes of reproductive decision-making among women
living with HIV. In using grounded theory method, the primary objective of this study
was to generate a substantive theory.
Audiotaped interviews were completed with 29 women living with HIV and nine
of their primary support persons. Other sources of data included field notes about each
interview, non-fictional literature, and articles in the popular press that described the
experiences of reproductive decision-making for women living with HIV. Data were
analyzed by using techniques of constant comparison for qualitative data.
'Affirming life despite a poisoned fate' was identified as the core process in
reproductive decision-making by women living with HIV. This process consisted of two
competing elements: 'struggling with vulnerability' and 'striving for longevity.' These
elements interacted dialectically so that change in a woman's sense of her own
vulnerability affected her capacity to strive to live longer. This interaction depended on
the woman's experience of 'wanting to live,' 'managing fears of HIV,' 'awakening
personal spirituality,' and 'yearning for connection.' A woman's sense of balance in
'struggling while striving' contributed to decisions about 'risking deadly connections,'
i.e., whether she would risk possibly giving others HIV when having sex or giving birth.
The women considered a range of practical, romantic, intellectual, and ethical
determinants in deciding "how risky is risky?" This personal calculation of risk
accounted for the diverse and sometimes contradictory feelings and thoughts described
by women as they made these decisions, and allowed each woman consciously or
unconsciously to justify their choices.
Throughout the overarching process of 'affirming life despite a poisoned fate,'
each turning point in the women's decision-making depended on their life context
including their own sense of 'mothering capacity' and 'mothering anxiety,' and how they
saw themselves in terms of the struggle with vulnerability and the striving for longevity.
For these women, reproductive decision-making involved making sexual decisions about
whether to protect others from getting HIV and to protect themselves from the potentially
traumatic result of getting pregnant. Such decisions were heartbreaking emotionally as
each woman confronted deep convictions about spirituality and morality, her many
contradictory, changing desires, and the powerful, social forces that shape perceptions
about motherhood. These decisions were not always well-informed because of the gaps
in knowledge about the most effective treatments and best prevention practices for HIV-seropositive
women.
This grounded theory provides some insights about the realities of reproductive
decision-making of women living with HIV. Health professionals must be sensitive to
the effects of HIV stigma and be prepared to set aside their personal values, and
encourage women to reflect on "what matters most" when faced with pregnancy
decisions. Health professionals have a crucial role in assisting women living with HIV to
optimize their health, by knowing available HIV prevention technologies, and informing
them about current treatment options. Efforts must also be made to involve the primary
support persons or sex partners and to assist couples in talking about sexual issues. Other
important implications included new research directions to address the unique concerns
of women living with HIV and policies to ensure the provision and accessibility of
comprehensive health services for all those who must endure the terrible reality of this
disease.
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