Análisis del estado situacional de los padres de familia

Some participants shared vivid descriptions of when they were diagnosed despite the fact that for some it had been many years ago, indicating that it was a salient life event. Within the narratives, an HIV diagnosis occurred at different points on the mothering trajectory. The majority of participants were either already a mother or pregnant when diagnosed HIV positive. Previous research has considered either women’s diagnostic experiences or how pregnant women deal with an antenatal HIV positive result (Walsh et al. 2012, Kelly 2012, Kelly, Alderice, and Lohan 2009, Long 2009, MacDonald 2008). In the current study, a significant shared experience for the mothers at diagnosis was a heightened sense of

responsibility towards their children, both born and unborn. In particular, participants’ primary concern upon diagnosis was the possibility that their children could also be HIV positive, and very few spoke about their own personal needs following diagnosis. Children born prior to diagnosis would not have had access to vertical transmission interventions, therefore their children’s HIV status is of major concern to newly diagnosed mothers who suspect they could have been HIV positive when pregnant. Consequently, until her child’s HIV status is

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established, a mother has to deal with the fact that she could have unwittingly infected her child. Nevertheless, the risk of vertical transmission is dependent on the point of infection and older children would not be at risk of being infected if their mother had contracted HIV after they were born. While earlier research examined HIV testing of new-borns (Shannon and Lee, 2008), limited information exists on maternal experiences of testing older children for HIV. This study found that, upon diagnosis, mothers prioritised viral testing of their children, irrespective of the point of infection.

Women infected with HIV after their children were born still wanted to have them tested. This is unsurprising, given that BHIVA guidelines (2009) recommend that “…all the children of HIV positive parents are tested for HIV“(p. 19). Therefore, doctors advise all newly diagnosed mothers to test all of their children, which is a causal factor in them prioritising this testing as soon as possible after diagnosis. The mothers of children who were born prior to maternal infection occurring appeared to overestimate the possibility of their children being infected, this may be related to the advice given by doctors upon diagnosis. The study findings suggest that, even when the likelihood of VT is low mothers were troubled about the possibility that they could have infected their children.

Previous recent research has reported that for HIV positive mothers their own health is of less importance than that of their children (Walsh et al. 2012, Walulu, 2011). The current study affirms and extends this notion of ‘child-centeredness’. These narratives suggest that ‘child- centredness’ occurs at the critical moment of diagnosis and represents a ‘moment of being frozen in time’ that cannot be overcome until the status of their children is known, only at that point can the mother look past the ‘child-centredness’ to consider her own response to the news. There were similarities between participants who were already mothers and women diagnosed due to antenatal testing at the moment of diagnosis in so far as the latter equally spoke about the dominance of their concerns about the possibility VT. Whilst the ‘moment of being frozen in time’ perception is similar, in fact the risk is profoundly different between mothers and pregnant women. Pregnant women have to take HAART to reduce the possibility of infecting their unborn babies and the outcome of this intervention is not be known until after their baby is born. This dilemma is resolved sooner for mothers, usually within a couple of months of diagnosis, than for pregnant women.

A number of studies have proposed that the pregnant woman’s dominant concern following an antenatal diagnosis is the prevention of VT (McDonald 2008, Kelly and colleagues, 2012, Kelly,

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Alderdice and Lohan 2009, Long 2009, 2006). This study highlights that the shared reaction of those who are already mothers and pregnant women is similar and focuses on possibility of vertical transmission having occurred. However it also distinguishes that the issue is resolved relatively soon for mothers after diagnosis, whereas mothers- to-be need to wait until at least three months after the birth of their baby to bring this to a conclusion.

A distinctive feature of this study was that some of the participants had been diagnosed during their first pregnancy. This timing of an HIV diagnosis complicated their transition to

motherhood; this unique situation has received little attention previously. Participants who were first time mothers-to-be when diagnosed did not have previous pregnancy experiences and knowledge to draw on. These mothers-to-be had to simultaneously deal with the normal first time pregnancy anxieties along with the associated implications of their HIV diagnosis, a situation that could perhaps overshadow the joy and anticipation associated with first time motherhood.

Following their diagnosis, some women describe adjusting their life expectations, for example one woman actively avoided intimate relationships since her diagnosis in the mid-1990s, and others changed or abandoned career plans, indicating a level of biographical disruption (Bury 2001, 1991, 1982). Certainly, the study’s asylum-seeking mothers diagnosed in Ireland did not anticipate that HIV would be part of their future when they embarked on their migration journey. Supporting this, Crossley (2000) argues that an HIV diagnosis affects individuals’ temporal orientations due to the fact that many live life by looking to the future. As discussed in Chapter Four, participants’ diagnostic experiences spanned twenty years, consequently some had been diagnosed when HIV was a life-threatening illness whereas others were diagnosed during the HAART era. Therefore, some spoke of amending their future plans when first diagnosed, however, over time, their plans had changed as the benefits of HAART became apparent on the life expectancy of those living with HIV.

This study’s findings indicate that an HIV diagnosis affects the outlook of mothers living with HIV although, over time, the impact is not necessarily always negative, indeed, it can be a motivator for positive change. For example, one participant successfully underwent detoxification from opiates after becoming HIV positive, despite previous failed attempts indicating her diagnosis motivated her to finally address her addiction problem. Others ended dysfunctional relationships some of which had been with the men who infected them with HIV. This idea of an HIV diagnosis as a motivator for positive change is consistent with other

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research findings (Wilson 2007, Doyal and Anderson 2005, Pittiglio and Hough 2003).

Therefore, these findings extend understanding about how mothers respond to and manage an HIV diagnosis.

O’Reilly (2008) argues that one of the components of feminist mothering is agency, which is the ability to make choices and changes within one’s life. Following diagnosis, some mothers demonstrated agency as part of the changes they made in their lives, suggesting that their diagnosis contributed to this. However, for newly diagnosed mothers-to-be the potential for agency is limited, as until their babies are born to know whether their children are HIV positive or not. Therefore, the role agency has in the lives of newly diagnosed mothers-to-be appears to be related to the diagnosis context.

This study provides insight into the meaning of an HIV diagnosis for mothers. For some the transition to motherhood coincided with the diagnosis, due to antenatal screening, whilst for others they were already mothers. To summarise women diagnosed as mothers, or mothers – to- be appear to be more concerned with the possible ramifications of the diagnosis for their unborn babies and children than with their own personal needs. Their need to know if their children are HIV positive too is their priority after diagnosis. Given the participants’ descriptions of the process of diagnosis and the significance they placed on the diagnostic encounter, it is important that the impact of an HIV diagnosis is recognised for mothers. Their HIV diagnosis caused some mothers to make significant life changes. Much prior research has focused on diagnosis in pregnancy whereas this study explores diagnosis across the mothering trajectory, including first-time mothers. My research therefore builds on previous work to give insight into the meaning of the maternal HIV diagnosis experience.