STORIES OF MOTHERING WHILE HIV POSITIVE

1. STORIES OF MOTHERING WHILE HIV POSITIVE DENISE PROUDFOOT MAY 2013 UNIVERSITY OF BATH,UK /DUBLIN CITY UNIVERSITY, Eire

2. STORIES OF MOTHERING WHILE HIV POSITIVE DENISE PROUDFOOT

3. WHY? • HIV remains a challenging illness to live with despite the advances in treatment regimens since the introduction of HAART. • Women account for nearly half of those infected globally (UNAIDS, 2011). Many have children. • Very little exploration with HIV positive mothers in Western Europe in the post HAART era. • Explore mothering in the HIV normalisation era to identify cultural and societal narratives of motherhood with HIV. • Understanding the experiences of mothers living with HIV (MLH) can inform the planning and implementation of appropriate gender specific health and social care.

4. HIV figures in Ireland • In Ireland there are currently 6,287 known HIV positive individuals. • Women of reproductive age account the majority of new HIV cases in females • Of the 85 newly diagnosed women, 27% were pregnant. • Since 1990, over 1,300 babies have been born to HIV positive mothers living in Ireland. ref HPSC, 2012

5. The social construction of mothering as it applies to MLH. • For many women having children gives a sense of fulfilment and it is as source of identity, pride and achievement. • The maternal experience of HIV positive women differs substantially from non-infected women. • Many mothers experience societal disapproval because they do not fit idealised view of motherhood. • For MLH living with HIV is closely related to their experiences of motherhood.

6. Mothers dealing with illness consider themselves as mothers first and then women (Vallido et al. 2010). The multidimensional impact of maternal HIV infection is apparent. Social impact of HIV prevails. Very little enquiry done in the post HAART era. Many recent publications collected data some years ago. Although mothering was not the primary focus of many of the reviewed studies mothering experiences/challenges emerged during data collection. What can be learned from literature about MLH?

7. Mothers & HIV • HIV affects men and women differently. A woman’s capacity for childbearing will have a major impact on her experience of HIV disease (Anderson & Doyal, 2004). • Sandelowski & Barosso (2003) review concluded that being a mother is important in maintaining physical and social survival for HIV positive women. • Recent studies in South Africa have revealed the complexity of HIV positive mothers’ lives.

8. Theoretical influences of my doctorate study • Stigma as it applies to the unique mothering experiences of MLH. • Social Capital Theory • Feminism theory, specifically feminist mothering theory. • Normalisation of HIV.

9. Research Design • Narrative project. • Ethical Approval Nov 2010 • Interviewed 11 mothers who attended HIV centre in Dublin, Eire in 2011. • Adopted an experience centred approach to the narratives (Murray 2000).

10. 11 in total (5 African mothers/5 Irish /1 European) Age range between 22-54 years. Years since diagnosis ranged from 23 yrs to six months at time of interview. Most had HIV negative children. Two had grandchildren. Majority were parenting alone (some were widows) Participants

11. Analysis Method • Murray’s (2000) narrative analysis framework. Thiss approach focuses on four specific contexts of a collected narrative: • Personal - how an individual presents individual story. • The Interpersonal - focuses on the interaction between the participant and the interviewer and how the narrative evolves through the interview. • The Societal - how the stories relate to cultural/societal contexts and the social representations within the narratives. • Finally, the positional level of analysis explores the differences in social position between the narrator and the researcher (Murray, 2000).

12. Types of stories • Adjustment to HIV diagnosis. • Being HIV positive and pregnant. • Wider social impact of HIV on their lives including disclosure and stigma. • Protecting their children in utero and after. • Importance of peer support.

13. Protecting my children • Pregnancy • Preventing vertical transmission of HIV. • HAART given to baby after birth. • As children grow…. • Intimate family contact means the continued risk of infection. Avoiding blood.

14. One time I hurt myself, instead of sitting down and having a cup of tea and rest, I took a mop straight away to the kitchen I took a mop from the shed, take the high heels take a mop and clean, why did I do that, I don’t know, I don’t want a dirty house as well, and then I squeeze the mop and broke a nail, and the blood even though I was at home I was scared I said, no, no, don’t come next to this… the blood was flowing, flowing…. it was very painful but my fear was that blood, don’t come next to me. But I make sure that nobody comes down stairs, stay upstairs with your big brother, I don’t want anybody near this blood, I always train them that way, blood when they see blood they run, because I trained them that way cause I am scared.

15. Telling others HIV disclosure is a multifaceted process that involves: “… making a voluntary or involuntary decision about whom to inform about one’s serostatus, why, when, where and how” (Eustace and Ilagan, 2010) pg 2096).

16. Close friends I tell, you know what I mean. I just wouldn’t just meet somebody and tell them, but I’ve told a few people like. I don’t tell job interviews and things like that cause there’s no need for them to know. But people are actually shocked when they find out , when I do say it to them for the fact that Jesus Christ you’d never think it. I think people put mostly HIV down to drug addicts, and people that, gay people, that’s what it always was years ago, and people that sleep around. I never slept around do you know what I mean, it just so happened it was the first bloke I slept with that I got it off you know so, you just can’t help who you fall in love with either at the end of the day.

17. This study revealed • The HIV experience is different for mothers as their primary concern is for their children. • Those diagnosed in pregnancy have very little time to adjust to their own diagnosis as the emphasis is on preventing vertical transmission. • Disclosure remains an issue, not related to how long it is since diagnosis. • Importance of peer support/meeting others in the same boat because many are isolated. • Ongoing protection of children from HIV is a concern.

18. A mother's heart is a patchwork of love.  ~Author Unknown • Thank you

19. References • Anderson J & Doyal L (2004) Women from Africa living with HIV in London: A descriptive study. AIDS CARE , Vol 16 ,No.1 pg 95-105. • Eustace, R.W. and Ilagan, P.R. 2010. HIV disclosure among HIV positive individuals: a concept analysis. Journal of Advanced Nursing, 66(9), pp.2094-2103. • Long C ( 2009) Contradicting Maternity. Wits University Press, SA. • Murray M (2000) Levels of Narrative Analysis in Health Psychology. Journal of Health Psychology. Vol 5(3) 337–347. • Mischler E. G (1986) Language, meaning and narrative analysis .Harvard UP.USA. • O’Donnell K. Moran J & O'Hora A (2012) HIV & AIDS in Ireland 2011 Annual Summary. National Disease Surveillance Centre (NDSC), Dublin Ireland. • Sandelowski M & Barroso J (2003a) Motherhood in the context of HIV Maternal Infection. Research in Nursing & Health . 26. • Squire, C. (2008) ‘From experience-centred to culturally-oriented narrative research. In M. Andrews. C. Squire and M. Tamboukou (eds) Doing Narrative Research. London: Sage.