Integrating women's perspectives on prenatal human immunodeficiency virus screening: toward a socially just policy.

Abstract

The purpose of this study was to include the voices of laywomen at risk for or living with human immunodeficiency virus (HIV) in the ongoing debate on prenatal and newborn HIV screening. A phenomenological approach based on Moustakas's heuristic model was used in order to explore women's lived experience. The investigator interviewed 33 women, half of whom were HIV-positive, using an open-ended, loosely structured interview guide. Two major domains were identified related to the women's views and experiences of HIV testing: the importance of a woman's awareness of her HIV status for both her own and her child's sake, and the need to maintain voluntary choice. Common themes emerging from the stories included paradoxical dimensions of living with the virus, such as fear of death, worry about health, concern over the pandemic itself, and loneliness, interspersed with faith and hope. Implications for health care providers include an enhanced understanding of the impact of the diagnosis, improvement in counseling techniques, and the importance of the establishment of trust.