Evidence base for narratives

The unique feature of this resource is that it recognizes that understanding the subjective experiences of HIV positive men and women is equally important as acquiring medical knowledge when it comes to planning and providing care. It is only by addressing both that we can hope to normalise the experience of pregnancy in the context of HIV as much as possible. The narratives within this resource are based on a longitudinal qualitative study conducted in Northern Ireland between 2007 and 2010. The narrative scripts for our 'actors' were written based on the original research interviews, with care taken to reflect the key themes from the research.

The research study aimed to explore the real life contexts in which women and men, affected by a diagnosis of HIV, make reproductive decisions and their experience of pregnancy, childbirth and the care they received. In particular, three groups of women were included in the study: those who were aware of their diagnosis before becoming pregnant, those who learned of their diagnosis during antenatal screening and HIV negative women choosing a pregnancy with an HIV positive partner. Twenty nine in-depth interviews were conducted with ten women and five men at different stages in their journey through the reproductive trajectory. The timing of the first interview depended on when the diagnosis of HIV occurred but the end point for interviews was in the postnatal period. The analysis was multi-staged, at first focusing on each individual narrative and biographical transition between the interviews, second, a comparative thematic analysis to identify themes of commonality and difference across the interviews and third, an iterative analysis designed to go between emergent experiential themes from the study data and the wider body of work on HIV and pregnancy. The potential to naturally parent a child was a primary concern for both women and men following heterosexual diagnosis of HIV. For the HIV positive men, the prospect of fatherhood was central to re-building a sense of masculinity following diagnosis.

The study findings revealed how the symbolic significance of HIV, largely overshadowed by a perception of stigma, was sometimes greater than their concerns for the medical management of their HIV during pregnancy, the focus of which was reducing the risk of HIV transmission to their baby. While the women recounted an overall positive experience of care, significantly, every participant could also recount a negative experience of care. Lack of knowledge and experience among caregivers, breaches of confidentiality and the experience or perception of being treated differently because of their HIV status were central to participants’ negative experiences of care. Pregnancy and parenthood symbolised nomality, and yet, the pervasive presence of stigma threatened the experience of pregnancy and care, requiring particular attention to be  paid to the managment of information.

Kelly C., Alderdice F., Lohan M., Spence D. (2013) ‘Every pregnant woman needs a midwife’ – the experiences of HIV affected women in Northern Ireland. Midwifery 29, 132-138 (http://www.sciencedirect.com/science/article/pii/S0266613811002099)  

Kelly C., Alderdice F., Lohan M., Spence D. (2012) Creating continuity out of the disruption of a diagnosis of HIV during pregnancy. Journal of Clinical Nursing 21 (11-12), 1554-1562. (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2702.2011.04017.x/abstract)

Kelly C., Lohan M., Alderdice F., Spence D. (2011) Negotiation of risk in sexual relationships and reproductive decision-making amongst HIV sero-different couples Culture, Health and Sexuality 13 (7), 815-827 (http://www.tandfonline.com/doi/abs/10.1080/13691058.2011.563865)