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LETTERS: A Jayasuriya and P S Allan Are we doing enough? BMJ 2007; 334: 1287-b-1288-b [Full text]

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Understanding the lived experience of Human Inmunnodeficiency Virus (HIV) informs policy and practice

Carmel Kelly, Fiona Alderdice, Maria Lohan, Dale Spence   (26 June 2007)

Understanding the lived experience of Human Inmunnodeficiency Virus (HIV) informs policy and practice 26 June 2007
Carmel Kelly, PhD Student School of Nursing & Midwifery Research Unit, Queens University Belfast, 10 Malone Road, Belfast, BT9, Fiona Alderdice, Maria Lohan, Dale Spence Send response to journal: Re: Understanding the lived experience of Human Inmunnodeficiency Virus (HIV) informs policy and practice	Voluntary antenatal testing plays a vital role in preventing mother to child transmission and also identifying new diagnosis and therefore reducing onward transmission to new sexual partners. While a testing policy to offer repeat HIV testing to high risk individuals at 32 weeks of pregnancy, as outlined by Jayasuriya and Allan, is to be welcomed, it does raise a number of concerns about consent, quality of counselling and impact of a diagnosis of HIV in advanced pregnancy (Green & Smith, 2004) There is substantial qualitative literature on women’s experiences of living with HIV, its impact on reproductive decision making (Kirshenbaum, 2004) and motherhood (Sandelowski & Barroso, 2003), but notably less addressing HIV positive women and men’s experience of their preconception, antenatal and postnatal journey. The author, an experienced HIV nurse, has recently commenced a PhD study which aims to improve our understanding of the lived experience of reproductive decision-making, pregnancy and childbirth after a diagnosis of HIV. In particular we seek to explore the experiences of three groups of women, those who are aware of their diagnosis before becoming pregnant, those who only learn of their HIV diagnosis in antenatal screening and HIV negative women choosing pregnancy with a HIV positive partner. In addition we seek to explore the experiences of HIV positive men who also face reproductive dilemmas with their partners who may or may not be HIV positive. One of the most important contributions of this qualitative study will be to increase our understanding of the patient experience of care, which will serve as a basis for increasing health professional understanding of health and illness, and could inform the development of patient-centred interventions. A diagnosis of HIV at any time is profoundly traumatic. If health care professionals, notably midwives, are to be involved in assessing risk, contact tracing and HIV testing, networks between genitourinary medicine services and maternity care services need to be developed to provide training, support and onward referral pathways. References Green, G. and Smith, R. (2004) The psychological and health care need of HIV-positive people in the United Kingdom following HAART: a review. HIV Medicine Volume 5, Supplement 1, May 2004. Kirshenbaum, S., Hirky, E., Correale, J., Goldstein, R., Johnson, M., Rotheram-Borum, MJ., and Ehrhardt, A. (2004) Throwing the Dice : Pregnancy Decosion-Making Among HI-positive women in four U.S. cities. Perspectives on Sexual and Reproductive Health 36 (3) 106-113. Sandelowski, M. and Barroso, J. (2003) Towards a metasynthesis of qualitative findings on motherhood in HIV-positive women. Research in Nursing & Health 26; 153-170. Competing interests: None declared