Creating continuity out of the disruption of a diagnosis of HIV during pregnancy

Aim: To understand the uniqueness of the experience of testing HIV positive from the perspective of pregnant women.

Background: As more people learn of their HIV diagnosis through routine screening processes, it is timely to reflect on the impact of receiving an unexpected positive result.

Design: A prospective qualitative study.

Methods: This paper draws on the case studies of four women who were participating in a larger prospective qualitative study of reproductive decision-making, pregnancy and childbirth following HIV diagnosis. Multiple interviews were conducted following diagnosis during pregnancy, and, after the birth of their babies. Thematic data analysis was undertaken.

Results: Drawing on Becker's theory of disruption, we document the 'sudden disjuncture' of their antenatal diagnosis and the embodied emotional struggle the women engaged in to create continuity in their lives. A diagnosis of HIV disrupted the women's biographies in terms of their health, relationships and social identity. As pregnant women, the threat of HIV was experienced most significantly in relation to their unborn child. However, their narratives also revealed how a diagnosis of HIV in the context of pregnancy, whilst traumatic, provided a focus for regaining continuity in their lives, as the baby became a metaphor for hope and orientation toward the future.

Conclusions: As HIV testing becomes more 'routine', the findings of this study serve to remind health professionals that a positive diagnosis continues to constitute a major trauma to individuals and families.

Relevance to clinical practice: We propose that appropriately educated nursing and midwifery staff could facilitate the 'meaning making' process that is required for newly diagnosed HIV positive persons to find a subjective sense of well-being in their lives.