Title: Affirming life despite a poisoned fate : a grounded theory of reproductive decision-making among women living with HIV

Author: Hoogbruin, Amandah Lea

Degree Doctor of Philosophy - PhD

Program Nursing

Copyright Date: 1999

Abstract:

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.

URI: http://hdl.handle.net/2429/9882

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