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

ORIGINAL ARTICLE

Creating continuity out of the disruption of a diagnosis of HIV

during pregnancy

Carmel Kelly, Fiona Alderdice, Maria Lohan and Dale Spence

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.

Key words: antenatal screening, HIV diagnosis, narrative research, nurses, nursing

Accepted for publication: 7 October 2011

Introduction

The success of HIV treatment and the acceptability of

antenatal screening have led to calls for the ‘normalisation’

of HIV testing as a part of routine medical care. Receiving a

HIV diagnosis at any time has been found to be traumatic,

including elements of poor psychological adjustment, vulner-

ability, denial, fear of disclosure, isolation and feelings of

depression (Catalan et al. 2000, Stevens & Hildebrandt

2006, Hult et al. 2009, Anderson et al. 2010, De Santis &

Authors: Carmel Kelly, BSc, MSc, PhD, Lead Nurse, Sexual Health

Services, South Eastern Health and Social Care Trust and School of

Nursing and Midwifery, Queen’s University Belfast; Fiona Alderdice,

BSSc, PhD, Professor of Perinatal Health and Wellbeing, Queen’s

University Belfast; Maria Lohan, BA, PhD, Senior Lecturer, School of

Nursing and Midwifery, Queen’s University Belfast; Dale Spence,

MSc, PhD, RM, Teaching Fellow, School of Nursing and Midwifery,

Queen’s University Belfast, Belfast, UK

Correspondence: Carmel Kelly, Lead Nurse, School of Nursing &

Midwifery, Queen’s University Belfast, Medical Biology Centre, 97

Lisburn Road, Belfast BT9 7BL, UK. Telephone: +44 28 44838392.

E-mail: [email protected]

� 2012 Blackwell Publishing Ltd

Journal of Clinical Nursing, doi: 10.1111/j.1365-2702.2011.04017.x 1

Barroso 2011). While studies have shown antenatal screening

to be acceptable to the majority of women (Simpson et al.

1998, Sherr et al. 2006, Simpson & Forsyth 2007, de Zulueta

& Boulton 2007), there are relatively few studies that have

sought to understand the uniqueness of the experience of

being diagnosed with HIV infection from the perspective of

pregnant women (Kirshenbaum et al. 2004, Simpson &

Forsyth 2007). As more people learn of their HIV diagnosis

through routine screening processes, it is important to reflect

on the impact of receiving an unexpected positive result, so

that policies and interventions can be informed by patients’

experiences.

This paper draws on the case studies of four women who

received a diagnosis of HIV infection during pregnancy.

These women were participating in a larger prospective

qualitative study of reproductive decision-making, pregnancy

and childbirth following HIV diagnosis. In this paper, we

draw on Becker’s theory of disruption as a framework to

understand one of the most important themes to emerge from

all of the women’s narratives, namely the ‘sudden disjunc-

ture’ of an antenatal diagnosis and the embodied emotional

struggle that women had to engage in to create continuity out

of the disruption brought about by their diagnosis during

pregnancy.

Becker on continuity and disruption

The core tenet of Becker’s model is that the way human

beings narrate stories of disruption to their life course are

cultural in nature (Becker 1997). She identifies ‘the moral

force of normalising ideologies and the cultural foundations

of metaphor’ as the two powerful forces behind people’s

understanding of continuity following disruption (Becker

1997, p. 191). In essence, the disparity between the cultural

ideal of how life is supposed to be lived and the reality of

people’s experiences becomes their barometer for under-

standing disruption. However, in a society that emphasises

the normalcy of linearity, continuity and future orientation

also become part of our understanding of living life. Becker

(1997) highlights the irony that while ‘continuity in life is an

illusion, it is an effective one: it organises people’s plans for

and expectations about life, as well as the ways they

understand who they are and what they do’ (Becker 1997,

p. 191). A core concept in Becker’s model is embodied

distress (Becker 1997). Embodied distress was most evident in

our women’s narratives when their embodied self (the known

self before diagnosis) was ‘at odds with what others – and

they themselves – view as normal for their gender, age and

circumstances’ (Becker 1997, p. 16). Stories of disruption are

therefore, by implication, stories of difference.

Methods

Four case studies were purposefully selected from a larger

prospective study, designed according to the principles of

interpretative qualitative research. The larger study com-

prised of 29 in-depth interviews with 15 HIV-affected women

and men who were actively trying to conceive, were

pregnant, or the partner of a woman who had recently given

birth (Kelly et al. 2011). Northern Ireland, a relatively low

sero-prevalence area for HIV was one of the last regions of

the UK to introduce antenatal HIV screening in 2003.

Recruitment for the study was facilitated by the medical

staff of the regional HIV unit, following ethical approval

from the Office of Research Ethics Committee for Northern

Ireland.

The philosophical framework for the study was informed

by interpretive sociology, which is concerned with the social

construction of consciousness (Harvey et al. 2000). This

focus on how individuals understand and make sense of their

lives resonates with the focus of narrative research methods

that recognise the extent to which the stories people tell

provide a vehicle through which meaning is recovered and

re-enacted, providing insights about their lived experiences.

The aim of choosing a narrative approach for data collection

and analysis was, therefore, to explore how the women made

sense of events and actions in their lives (Reissman 1993). By

adopting an unstructured and conversational style in inter-

views, participants were invited to tell their story from any

starting point in their life. A prospective repeat interview

model was used, with interview schedules negotiated with

each individual. The second interview also provided an

opportunity for the researcher to clarify and review with the

women some of the key themes that were emerging from the

first interviews. Table 1 provides information on the four

women, including their age range (in brackets), place of birth,

partner’s HIV status and stage of pregnancy for each

interview. The names of participants have been changed to

protect their identity. All of the interviews were conducted in

the women’s homes during 2008–2009 and lasted between

60–90 minutes. The interviews were audio taped and tran-

scribed verbatim by the researcher (CK).

While the focus of the overall study was to explore

reproductive decision-making and experience of pregnancy

and childbirth following HIV diagnosis, preliminary analysis

of the larger data set uncovered unique themes and storylines

for these four women. This present analysis is therefore based

on eight interviews with four women. All members of the

research team independently read and coded a selection of the

original transcripts, reducing the potential bias that comes

from singular analysis (Patton 1999). After initial coding, the

C Kelly et al.


2 Journal of Clinical Nursing

transcripts were imported into a qualitative software package

[NVNVIVOIVO 7; QSR International (UK) Limited, Southport, UK],

where thematic development could be recorded electronically

under the broad themes that emerged from the data. A multi-

staged approach to analysis enhanced the validity of our

subjective interpretation to accurately reflect the data. First,

we focused on each individual narrative and biographical

transition between the interviews. Second, using a method of

constant comparison (Ziebland & McPherson 2006), a

deeper level of analysis and interpretation of all the issues

arising within each theme was undertaken. Third, analytical

depth was achieved by moving iteratively between the

emergent data, the original transcripts and the wider body

of literature on HIV and pregnancy. The weaving of raw data

into the narrative synthesis of the emergent themes ensured

that data interpretation remained inextricably linked to the

words of participants. Analysis uncovered ‘characteristic

plotmarks’ (Bleakley 2005, p. 538) in the women’s narra-

tives. Six key themes contributed to the lived experience of

participants: the chaos of diagnosis, the experience of

otherness, the threat to their relationships, concern for their

baby, pregnancy as saviour and finally creating continuity out

of the disruption of diagnosis.

Results

From person to patient – the impact of a routine blood test

For all of the women, pregnancy represented normality and

natural order. Attending for antenatal screening was ‘part of

the routine’. They did not know that their lives were about to

change. One week and one phone call later, their lives would

change. The ‘phone call’ featured largely in all of the

women’s narratives, representing their entry into another

world. While there are inherent difficulties in providing

information about test results over the telephone as opposed

to in person, Jennifer’s experience cautions health care

professionals to reflect on the importance of what they fail

to say as much as what they do say. She responded to her

hospital’s request to return to repeat some of her blood tests.

She recounts her encounter with the midwife at the hospital:

The nurse was saying, ‘it’s hepatitis and HIV which your doctor

wants to repeat’. And I asked her, ‘is there anything wrong?’ and she

said, ‘I don’t know. It’s only the doctor who can tell you if there is

something wrong’. (Jennifer, 40–45)

The midwife gave her an appointment ‘on a certain date, to

see a certain doctor’. Unfortunately, the only certainty that

she took from her encounter with this midwife was that she

was HIV positive and that she was therefore not going to go

back for the appointment. It would be many agonising weeks

and a cancelled abortion later that she returned to receive her

positive HIV test result:

Now in my mind, now, because it was still early in pregnancy, I

decided that if there is any infection whether it is hepatitis or HIV

there is no child who I am going to give birth to with a disease. …I

thought I should do an abortion. [Partner’s name] was so happy,

excited, telling all the family there is going to be a child and I am

thinking ‘there is no child’. (Jennifer, 40–45)

This encounter represented a discovery of meaning for this

woman, but her narrative suggests that she was left floun-

dering.

Chaos of diagnosis

While the ‘phone call’ represented the point of entry into a

changed world for some of the women, the confirmation of

diagnosis was the moment when they experienced most

chaos. Their shock and disbelief, even after the initial phone

call had raised alarm bells for some, confirmed that they had

not considered themselves at risk of HIV:

So there were thousands of things in my head but I didn’t think of

that as HIV, no, not at all. Not even for a second. So when they told

me I was like, ‘ok that must be mistaken. That means that they will

have to check it again’. (Anna, 25–29)

Table 1 All the names of participants have been changed to protect their identity

Maria (30–34), born in Northern Ireland, had tested positive in 2004 during her second pregnancy. Her partner tested negative. She was first

interviewed at 10 weeks gestation of her third pregnancy and again 8 weeks postnatally

Anna (25–29), born in Eastern Europe, was first interviewed at 31 weeks gestation and again 1 year postnatal. Her partner, who had tested

negative, was present during her first interview at her request

Jennifer (40–45), born in Africa, was interviewed at 32 weeks gestation and again 6 weeks postnatally. Her partner tested negative

Sue (25–29), born in Asia, was first interviewed 4 weeks after the preterm (30 weeks) birth of her baby, and the second interview took place

10 weeks later, 6 weeks after her baby’s discharge from hospital. Her partner also tested positive

Original article A qualitative study


Journal of Clinical Nursing 3

Using metaphors such as ‘nightmare’, ‘enemy’ and ‘war’, the

women conveyed the feeling of being threatened by HIV. As

young women and expectant mothers they believed that

they had their whole life ahead of them. Their diagnosis

brought them face to face with the reality of their own

death:

Every day you stay at home and then you worry, maybe you will die

tomorrow, or next year or two years. I just want, I just hope that God

will give me twenty years more because my baby will be twenty years

old [sobbing]. (Sue, 25–29)

However, being confronted with their own mortality also

brought the illusion of continuity into focus, helping them to

find a different perspective to life, as Sue, explained in her

postnatal interview:

Nobody knows...Sometimes you just see the news about some

accident, right, like how many people died today in an accident or

something. Nobody knows. I think cancer is much more terrible than

HIV. But see like, lots of people whom are still young gets cancer. So

that’s life. (Sue, 25–29)

The diagnosis also represented an assault on their body,

which they had, for so long, taken for granted. For example,

in the following extract Maria suggests that the threat of HIV

shattered her confidence in her body, requiring extra

vigilance, which often led to extra sensitivity to any small

changes in her body:

Like I was, like if I had of coughed more than twice a day I would have

thought this is it, I am going to die. I would have to go to the [hospital].

If I had any ache or pain or anything, I had to get checked out cause I

was so scared in case I didn’t make it to the hospital in time, what if

something is wrong.... It was just a nightmare. (Maria, 30–34)

Maria’s experience highlights the importance of these women

having an accessible point of contact in the HIV specialist

team so concerns can be readily dealt with and reassurance

given.

Experience of otherness

Most of the women’s narratives conveyed their initial belief

that they could not possibly be HIV positive because HIV

happened to other people. Following their own ‘HIV diag-

nosis’, the women found themselves to be thrust into a state

of otherness. They had become one of the people that

‘everyone is convinced that you don’t want to be around’:

The only thing I knew was the fact that, you know, everyone is

convinced that you don’t want to be around anybody and that is just

it. It is the whole stigma of it. (Maria, 30–34)

Separation from the ‘normal’ world threatened their sense of

self by forcing them into an experience of being different.

Renegotiation required them to present moral or normalising

accounts of their lives to reconcile the experience of becoming

the other. To distance themselves from the ‘others’, the

women did several things. First, they presented evidence of

their moral selves as ‘good people’. Also, to present their

behaviour as ‘moral’ and therefore ‘normal’ they were

required to distance themselves from the behaviours they

associated with HIV:

But I couldn’t put myself among those people because my lifestyle has

never been a quick lifestyle. I haven’t been changing and changing

boyfriends. How could this happen? I couldn’t put myself – that is

why I wasn’t going to put myself among the people who are HIV

positive. (Jennifer, 40–45)

Second, some of the women pointed to the behaviour of

others, including their current or ex partners, as a way of

questioning the lack of justice for their infection:

I am like how can them people and even [partner] to a point, go

round, abuse their bodies, sleep with everybody, use absolutely

nothing, that many times and have nothing? How does that work?

Where is the justice in it? (Maria, 30–34)

Threat to relationship

Only one partner out of the four women tested positive. Three

of the women told their partner almost immediately after their

own diagnosis. Their narratives revealed that they strongly

believed (based on their partner’s behaviour or some presenting

symptoms) that their partner would be positive also and was

perhaps the source of the infection. Confirmation that two of

these men were negative came as a great shock:

[partner’s name] straight away thought that it was him because he

was always really open with the fact that he went out and was very

stupid, went with a lot of women and never used anything...So

straight away thought it is definitely him that has done this...So that’s

why we couldn’t believe it then whenever...that his come back and he

was fine. So that was another shock…it is shocking to think that he is

not. (Maria, 30–34)

While the shock turned to relief, it also raised new concerns

about how their sero-difference would affect the relationship.

Only one woman feared that she had been infected before

entering her current relationship, and this was reflected in the

length of time she took to tell her partner. Her narrative

revealed her fear of rejection or recrimination from her

partner. Again her relief at his negative result raised questions

about how they could live together as sero-different partners:

C Kelly et al.



I was just feeling guilty. It could be me taking it to him. It could be me

who has brought it to him...I was praying that he would be negative. I

was really really praying. Also afraid of the way he could react if he

could be positive...Now the only thing I wanted to see was how

would we cope with this, me being positive and him being negative in

the house. (Jennifer, 40–45)

These narratives of partner notification reveal how different

people may have different support needs to facilitate partner

notification, depending on their subjective assessment of who

was the source of infection.

What about the baby?

While the women’s diagnosis stories resonate with other

studies on the impact of HIV diagnosis thus far, there is also

something unique about their experiences. None of them had

sought HIV testing and none of them had given much thought

to the routine antenatal tests that they had agreed to. The

threat to their life, felt at the moment of diagnosis, came at a

time when they were preparing to bring new life into the

world. As the quote below suggests, concerns for their baby

quickly took precedence over concerns for themselves:

The most, the most, the biggest difference is that I didn’t think about

myself. (Anna, 25–29)

For not only the women, but also their partners, the

expectant fathers, their immediate concern for the baby was

reflected in the question – what about the baby? The women

sought reassurance in biomedical information and found

solace in the purported effectiveness of medication. By

informing them that it is relatively safe for a woman with

HIV infection to give birth to a healthy baby, objective

medical evidence not only gave hope, but also challenged

prevailing discourses on whether women living with HIV

should, or could, have a baby. In doing so it helped reconcile

their pregnancy as ‘natural’ and ‘normal’:

Now I have to keep strong, you know. It would be much different if

they would tell me, ‘look you are pregnant, you are positive and your

baby will be positive’. But when they said that there was a big chance

and if we will do everything like not feeding, caesarean section and

these drugs, that there’s a chance. That makes me feel ok. So it’s not

the end of the world. (Anna, 25–29)

However, while reassured by medical advice, in using the

gambling metaphor of ‘chance’, the women were acknowl-

edging that they and their medical doctors could not

categorically predict the outcome of their pregnancy. These

were women who had already defied ‘chance’ by becoming

infected with HIV. Having the unbelievable happen to them

once left them less confident when it came to predicting the

future. As the next extract below illustrates, a ‘99% chance’

that nothing will happen could also be interpreted as a 1%

risk that ‘it could happen anyway’. Maria’s narrative also

reveals that while her primary concern was for her baby, she

also feared that ‘a sick baby’ would draw attention to and

uncover her HIV status:

I. So even during the time with [child’s name] pregnancy when the

doctors told you there was only 1% how did you feel?

P. The bit that threw me off was that they said it could happen

anyway or whatever, even before you deliver the baby. And that

was the bit that sorta scared me. Because I thought even before I

give birth to the baby, how do I know that it already hasn’t got it

anyway? Do you know what I mean? And you just think to

yourself imagine if it does, how do you cope with that? The poor

baby. And then there is that everybody definitely would find out as

well. Do you know what I mean? You can’t have a sick baby

and everybody wondering what is actually wrong with it. (Maria,

30–34)

For Maria, her pregnant body, normally a place of safety and

nurturance for the growing baby became a place where the

unpredictable could happen. All of the women’s narratives

revealed that their pregnancy experience was completely

overshadowed by concerns for the baby. They described the

experience as ‘emotional’, ‘stressful’ and ‘worrisome’. Like

going to hell and back:

We are not so free to just think about a growing baby, because you

are always thinking about more. When you are pregnant, without

thinking about any other things, I think it’s a bit like parents who find

out that the baby will not be healthy. You are not enjoying this

pregnancy so much like when you are thinking about a happy

outcome. (Anna, 25–29)

Pregnancy as saviour

However, the reality of their pregnancies also provided a

focus for them to live and fight for. In fact, the women’s

narratives conveyed a sense of the pregnancy as their

‘saviour’ and as a distraction from dealing with the shocking

news of their own diagnosis. Three of the women suggested

that the trauma of their diagnosis would have made them

consider suicide if it were not for the pregnancy:

I try at the beginning, when I come home, if no, if I am not pregnant

maybe I will suicide or something [sobbing] because I can’t face my

family. There is no future, everything is gone and after that we need

to decide to stay here. We can’t go back because we can’t tell my

family. (Sue, 25–29)




In the extract above, Sue, an Asian woman, conveys the

importance of the concept of ‘face’ in her culture as a display

of social identity and moral character. During our interview,

Sue’s sense of distress was almost palpable when she talked

about how her diagnosis of HIV had changed her plans to

return to her home country. She felt unable to tell her family

and, therefore, feared that she could not access treatment in

her home city, where her father was a ‘successful business

man’.

Creating continuity

While their HIV diagnosis constituted a disruption to their

biographies, their role as mother (to other children) or

potential mother (to unborn child) also provided a motiva-

tion for living. Motherhood became a key source of their

identity and the baby became a metaphor for hope, for

continuity of life and to looking towards the future, which in

turn, increased their determination to survive:

I didn’t even cry [after birth of child]. I was, I thought, ok, whenever I

am alone or everybody leave me alone and I will cry. It wasn’t that I

was trying please not to cry, it was just I was thinking about so many

things and I was worried from one way but from the other way I

knew I have to be strong...like [partner] is saying that there is

something natural that I am strong, that I have to be strong because I

have everybody to take care of...That keeps me strong as well. I know

I can’t be sick. (Anna, 25–29)

Despite the trauma of diagnosis and the subsequent stressful

experience of pregnancy, all of the women, without excep-

tion, believed in the need for routine antenatal screening.

They all agreed that ‘it was better to know’. Knowledge was

power and a means of gaining some agency over ill health.

Being aware of their HIV status placed them in a better

position to protect their babies, partners and also proactively

look after their own health. Describing the process as

‘brilliant’, ‘excellent’ and a ‘blessing’ revealed the human

propensity to find meaning out of despair:

From the other side, thank god that it happened like it happened.

Because we would still be, you know, like without knowing about

that and probably [partner’s name] has had his other test and he

is ok. It is negative. So thank god it already didn’t infect him.

(Jennifer, 40–45)

It is definitely brilliant because you think to yourself,’ imagine if I

didn’t know that I had it’. Do you know what I mean? Like [child’s

name] could have been a completely different story, you know as

well. So you do need to do the screening. You do need to know.

(Maria, 30–34)

As Anna concluded in her postnatal interview:

Generally my conclusion is like – in [home country] people are saying

that ‘the devil is not so scary as the way they are described’. Or the

other thing is like, ‘your enemy is less dangerous when you know

them’. (Anna, 25–29)

Discussion

Biomedicine has reclassified HIV as a chronic illness in the

developed world, leading to calls for the normalisation of

HIV testing as part of routine medical care. Yet, while there is

international consensus that preventing undiagnosed individ-

uals from progression to serious illness or death is an

undisputed rationale for routine screening, others caution

that biomedical science has ‘routinised’ AIDS, with the result

that the trauma of HIV/AIDS has been ‘forgotten and

displaced’ (Decoteau 2008, p. 232). However, as the findings

from this study clearly communicate, the trauma of HIV is

not over.

The findings from this study evoked the unambiguous

disjuncture and trauma that resulted from an antenatal

diagnosis of HIV. Becker (1997, p. 37) suggests that people

experience the time before diagnosis and time after diagnosis

as ‘two separate realities’ and that it is the conflict between

the known world (life before diagnosis) and the ‘nightmare’

(of diagnosis) which constitutes chaos. All of the women’s

narratives of the moment of diagnosis conveyed strong

emotional responses that were similar to other studies

(Ciambrone 2001, Kirshenbaum et al. 2004, Stevens &

Hildebrandt 2006, Sanders 2008). However, at the centre

of their disruption was the timing of their diagnosis of HIV.

Their realisation that ‘you could die at anytime’ (Becker

1997, p. 41) coincided with their bringing new life into the

world and adjustment to the role of ‘mother’, a role that

traditionally invokes images of strength and ‘being there’.

By drawing on Becker’s model of disruption and continuity,

we have explored how the cultural construction of ‘normality’

and other key cultural themes are central to how people come

to understand and renegotiate their life script after disruptive

events in their lives. The women experienced the most distress

at times when the experience they were living through clashed

with dominant cultural narratives about how life should be

lived. And yet, while the four women came from culturally

diverse backgrounds, their experiences of disruption were

strikingly similar, underscoring the universality of prevailing

normalising ideologies attributed to women, pregnancy and

motherhood. The findings highlight that, while biomedicine

valiantly presents HIV as a condition that is manageable and

under control, a public conceptualisation of HIV as a ‘social

C Kelly et al.



and physical death’ (Meursing & Sibindi 2000) persists. The

most important thing these women needed to hear was that

neither they nor their baby were going to die. This finding also

calls for renewed efforts to challenge and change the social

discourses on HIV. It is only then that the stigma of having a

positive result will be reduced. Wynia (2006, p. 6) has

suggested that ‘the key to the success of routine screening will

be if it leads to a decline in the level of stigma associated with

HIV infection, which would, in turn, make testing more

universally acceptable’.

The findings of this study also highlight the healing nature

of narratives. As other researchers have found (Lowes & Gill

2006), taking part in research interviews that involve the co-

construction of a narrative account of one’s life story can

have therapeutic benefit for the participant. For the women in

this study, interviews coincided with their process of ‘actively

making meaning’ as they lived through the disruption of their

diagnosis. Sociologist, Arthur Frank (2007, p. 390) reminds

us that people can be thrust into becoming patients with

terrible suddenness and that it is therefore the role of health

professionals who have had some preparation and training to

recognise ‘discoveries of meaning’. This observation calls for

a review of current approaches to psychological support

following diagnosis, to include an exploration of the

potential role of nurses and midwives to provide ‘narrative

care’, defined by Frank (2007, p. 390) as ‘help(ing) people

who have fallen out of the story of which they were part to

find a new story of which they can be part’.

Limitations

A limitation is that the study only reflects those who were

willing to take part, raising the possibility that there could be

some important differences between those who agreed to take

part and those who chose not to. As a further indication of

the trauma experienced at HIV diagnosis, it was noted that

12 women were diagnosed through antenatal screening

during the study’s recruitment period, however, only three

of these women agreed to participate in the study. Our small

sample size does not, therefore, allow for the findings to be

generalised to a wider population of people living with HIV.

However, our focus on understanding and illuminating

important recurring themes in the women’s narratives does

contribute to the limited literature on the impact of an HIV

diagnosis during pregnancy.

Conclusion

A diagnosis of HIV, particularly when received within the

context of routine screening tests, constitutes a major

trauma to individuals and families. While the impetus for

introducing antenatal screening is not disputed, the findings

from this study caution healthcare providers to recognise the

care needs of woman as women in their own right and not

merely as a focus of preventing mother to child transmission

of HIV (Segurado & Paiva 2007). For the women in this

study, their HIV and pregnancy trajectories were so

inextricably linked that they could neither focus on HIV

nor on the pregnancy – their only focus being the baby. This

finding suggests the need for psychological support inter-

ventions, which concentrate on the women’s transition, to

be provided in parallel with the current model of care,

which often focuses primarily on protecting the baby from

infection.

Relevance to clinical practice

The findings of this study will assist maternity care clinicians

to understand the experience of receiving a diagnosis of HIV

during pregnancy from the woman’s perspective, helping

them to facilitate the ‘meaning making’ process that could

help women to find a subjective sense of well-being in their

lives.

In addition, in the current context of international policy

decisions to ‘scale up’ routine HIV testing in healthcare

settings, these findings will have relevance for all nurses and

midwives across a range of health care settings who will

increasingly become the first point of contact for persons

being diagnosed with HIV infection through routine screen-

ing processes.

Acknowledgements

The authors wish to thank the anonymous reviewers for their

insightful comments and suggestions. We would also like to

thank the women and men who generously gave of their time

and selves by participating in the study. Thank you also to the

staff of the HIV clinic at the Royal Victoria Hospital for their

help with recruitment. This study was funded by a fellowship

grant from the School of Nursing and Midwifery, Queen’s

University Belfast.

Contributions

Study design: CK, FA, ML, DS; data collection and analysis:

CK, FA, ML, DS and manuscript preparation: CK, FA, ML, DS.

Conflict of interest

The authors state that there is no conflict of interest.




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

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