Testing HIV positive in pregnancy: A phenomenological study of women's experiences

Objective: globally women receive HIV testing in pregnancy; however, limited information is available on their experiences of this potentially life-changing event. This study aims to explore women's experiences of receiving a positive HIV test result following antenatal screening.

Design: a qualitative, phenomenological approach.

Setting: two public National Health Service (NHS) hospitals and HIV support organisations.

Participants: a purposive sampling strategy was used. Thirteen black African women with a positive HIV result, in England, participated.

Methods: data were collected using in-depth semi-structured interviews. An interpretive phenomenological approach to data analysis was used.

Findings: the emergent phenomenon was transition and transformation of 'being,' as women accepted HIV as part of their lives. Paired themes support the phenomenon: shock and disbelief; anger and turmoil; stigma and confidentiality issues; acceptance and resilience. Women had extreme reactions to their positive HIV diagnosis, compounded by the cultural belief that they would die. Initial disbelief of the unexpected result developed into sadness at the loss of their old self. Turmoil was evident, as women considered termination of pregnancy, self-harm and suicide. Women felt isolated from others and relationship breakdowns often occurred. Most reported the pervasiveness of stigma, and how this was managed alongside living with HIV. Coping strategies included keeping HIV 'secret' and making their child(ren) the prime focus of life. Growing resilience was apparent with time.

Key conclusions: this study gives midwives unique understanding of the complexities and major implications for women who tested positive for HIV. Women's experiences resonated with processes of bereavement, providing useful insight into a transitional and transformational period, during which appropriate support can be targeted.

Implications: midwives are crucial in improving the experience of women when they test HIV positive and to do this they need to be appropriately trained. Midwives need to acknowledge the social and psychological impact of HIV and pathways should be developed to support early referral for appropriate support.