Referral and attendance at a specialist antenatal clinic: qualitative study of women’s views

Authors


Dr M Dixon-Woods, Department of Health Sciences, University of Leicester, 22-28 Princess Road West, Leicester LE1 6TP, UK. Email md11@le.ac.uk

Abstract

Objective  To explore women’s views on being referred to and attending a specialist antenatal hypertension clinic.

Design  Qualitative interview study.

Setting  A pregnancy hypertension clinic in a large teaching hospital in the East Midlands.

Population  Twenty-one women (aged 18 years and above) attending the pregnancy hypertension clinic for the first time during their current pregnancy.

Methods  Women who had been referred to and attended a specialist antenatal clinic participated in semi-structured interviews. Data analysis was based on the constant comparative method.

Main outcome measures  Women’s experiences and perceptions of being referred to and attending a specialist antenatal clinic.

Results  Being referred to the clinic conferred an ‘at risk’ status on women. Some women welcomed the referral but others experienced it as unsettling. Many were unclear about why they had been identified as being at risk or had difficulties in accepting the legitimacy of the reason for referral. Women were often inadequately informed about why they were referred to the clinic, what they could expect and the benefits of attending the clinic over management in the community. Although attendance at the clinic was cited as a source of reassurance, the reassurance was often made necessary by concern raised by the initial referral.

Conclusions  Women’s accounts suggest that the interface between community and secondary antenatal services needs improvement to minimise possible adverse effects from identifying women as being ‘at risk’ during pregnancy.

Introduction

Pre-eclampsia and other hypertensive disorders of pregnancy are serious conditions. Specialist antenatal clinics provide one way of managing pregnancies for potentially high-risk women. Recent guidelines suggest that women should be screened in early pregnancy and referred for specialist advice if they present with one of several risk factors for developing pre-eclampsia or other hypertensive disorders of pregnancy.1 Women considered as ‘high risk’ are referred to specialist hospital-based clinics, while those deemed ‘low risk’ continue to receive their antenatal care from their community midwife and/or GP only. However, although there is a growing body of research on women’s experiences of and preferences for antenatal care, particularly for low-risk groups,2–5 little is known about women’s responses to being categorised as ‘at risk’ and referred to a specialist clinic during pregnancy. We aimed to explore, using qualitative methods, women’s views on being referred to and attending a specialist antenatal hypertension clinic.

Methods

With the approval of the Leicestershire Research Ethics Committee, we conducted semi-structured interviews with women referred to the pregnancy hypertension clinic, a specialist antenatal service provided within a large teaching hospital in the East Midlands, UK, delivering 5700 women per year. All women are ‘booked’ by midwives in the community for routine antenatal care and referred to the pregnancy hypertension clinic according to a list of predefined ‘risk’ criteria (similar to the Pre-eclampsia community guideline).1 This consultant-led clinic screens and investigates approximately 10–12 new referrals every week to establish their level of risk and, on the basis of this, subsequently plans and manages antenatal care for these women. Women who are deemed in need of continuing care are managed in the clinic.

Participants

Women (aged 18 years and above) attending the pregnancy hypertension clinic for the first time during their current pregnancy were invited to take part in semi-structured interviews about their experiences of being referred to and attending the clinic. Sampling was constrained by ethics and governance requirements, which meant that the interviewer could not approach the women directly. Women were provided with written information about the study on arrival at the clinic. They were asked to let the interviewer (C.J.), who sat in the waiting area in the clinic, know if they were interested in participating in the study by speaking to her or by allowing their contact details to be passed on. C.J. made arrangements to visit women who agreed to take part in the study at a place of their choice to conduct the interviews. The clinic ran weekly and recruitment to the study took place on seven occasions over a 5-month period. The interviewer did not have access to women’s medical records. It was therefore not possible to undertake purposive sampling (in which participants are selected on the basis of known characteristics such as age and parity). All women who agreed to take part in the study were interviewed.

Interviews

All the participants were interviewed by C.J., with all but one participant choosing to be interviewed at home. All participants gave written consent. A reflexive diary recording contextual details of the interviews and reflections on the research process was maintained. A prompt guide, initially based on a review of literature and discussions within the project team, was used to guide the interviews. The guide aimed to prompt women to express in their own terms, their views and experiences of being referred to and attending the clinic. It was used flexibly in response to the direction in which participants wanted to take the interview and revised, to some extent, in later interviews in response to emerging themes. All interviews were tape recorded and transcribed verbatim.

Analysis

The data were analysed using the constant comparative method.6‘Open’ codes to describe each unit of meaning within the transcripts were initially generated by C.J. who organised the codes into a coding framework of higher order thematic categories and subcategories. Data were assigned to the coding framework with the assistance of QSR N5 software (QSR International Pty Ltd, Australia). The coding framework was continually checked and modified to ensure an adequate fit with the data and M.D.W. independently validated the assignment of the data to the categories. An audit trail of the development of the framework and its categories was maintained.

Results

Twenty-four women agreed to take part in the study, but three tapes were unusable for technical reasons and the analysis offered here is based on 21 interviews. Most participants were recruited after speaking directly to the interviewer during a clinic visit; six women allowed their contact details to be given to the interviewer and were recruited following contact by the interviewer outside the clinic. The women interviewed were between 18 and 36 years of age and were between 14 and 23 weeks pregnant at the time of the interview. Six women were involved in full-time care for family, and the occupations of the others were diverse. Home circumstances varied: 14 women were living with a partner and up to three children, others lived as single parents with up to three children, while others with their own parents and one woman lived alone. The current pregnancy was the first for six of the women, the second for eight and for the remainder it was the third to fifth pregnancy. Seven women had attended the hypertension clinic during a previous pregnancy. Diversity of age, parity and type of risk (based on reason given by the participant for the referral) were represented but not ethnicity. Women from nonwhite backgrounds were under-represented in both the study and the women attending the clinic in early pregnancy. Our analysis continued to make conceptual comparisons across the transcripts until the point of ‘theoretical saturation’6 was reached, with no new insights emerging after the 15th interview.

Being referred: identification of ‘riskiness’

It was clear from the accounts that many women (14) engaged in active monitoring of their pregnancy, seeking clues as to how well it was going and interpreted any action or comment by health professionals within this context. They were alert to any indications that their pregnancy might be at risk, and most experienced the referral by their community midwife as conferring a distinct status where their identity changed from being a ‘normal’ pregnant woman to a woman for whom something might go wrong.

I do worry about it, more, yeah. […] you know something’s wrong rather than just, just a regular check and see how it goes […] so I’ve got to make this extra effort to get somewhere special. (participant 13)

However, many women had difficulty in accepting this changed identity because they did not recognise the reason for their referral as legitimate. Most women were able to give a ‘medical’ reason, which they believed had prompted their referral. These included a history of hypertension prior to the pregnancy (two), hypertension during earlier pregnancy (ten), hypertension or proteinuria in the urine in the current pregnancy (three), repeated urinary infection in previous pregnancy (one) or being at risk due to family history of hypertension or pre-eclampsia (ten). Some women recognised that they were likely to be referred based on previous pregnancies and were therefore unsurprised when referred, but others had difficulties in accepting that there was genuine cause for concern that would warrant referral. Many questioned the grounds for referral (16), particularly where their blood pressure was normal (10).

Cos I feel perfectly fine, the midwife a few weeks earlier said that my blood pressure was totally fine, erm, and you see people there that have got problems an’ you think, “Well I’m fine, so why am I sitting ‘ere?” you know and it’s not nice for, wasting time, […] I think if you’re feeling fit and well, and you turn up at the hospital you feel a fraud but I think you’re gonna feel that if you feel fine, there’s nothing really, they can do really. (participant 20)

Of those considered by their midwives to be at risk of developing high blood pressure, four reported no history of high blood pressure and no current indicators of high blood pressure. One woman (participant 17) believed that she was being asked to attend the clinic as part of a research project and only later discovered the real reason for the appointment; another believed that she had been referred due to previous miscarriages. Others (two) believed that referral to the hospital was something that happened to all pregnant women.

It wasn’t explained to me that it was a special clinic, I thought everybody who got pregnant went to some kind of clinic at the hospital so it wasn’t until about 4 or 5 times I’d been to there that I realised that it wasn’t. (participant 1)

Many women reported feeling very vulnerable at the time of referral, and two distinct orientations towards the referral could be identified. One group of women welcomed the referral, feeling that attendance at the clinic would provide reassurance.

Pleased yeah. ‘Cos I mean because I’ve lost a, a, previous baby […] I was very nervous this time round anyway so, it was a bit reassuring for me that they were gonna to keep a close eye on me, so, if anything I was more than happy to be checked out. (participant 19)

Other women, however, found the referral unsettling and frightening, usually because they were unclear about the significance of the referral and what was likely to happen. Many (12) women’s accounts suggested that they lacked information on whether they would be referred, why they were being referred, the nature of hypertension and its implications and what to expect at the clinic. Reports of anxiety and confusion were evident in these accounts, particularly among women who felt that they had no reason to be concerned about their pregnancy until the referral was made.

First time round I, it’s, it’s worrying, unnerving ‘cos you don’t know what to expect, you know, your mind’s sort of races an, you sort of think it, you, you think the worst. (participant 7)

Nerves, I wouldn’t be, I wouldn’t as nervous the next time but just the first time it was not being sure what they were goin’ to do and what the results were gonna be. […] I didn’t really know. I didn’t really know. I didn’t know whether it was just a case of, ‘aving your blood pressure taken, or whether they were gonna do blood tests or other tests involved, ‘cos I don’t like needles. (participant 9)

Where accounts did not feature reports of a lack of information (nine), six of the participants had attended the clinic during a previous pregnancy, one had a sister who had attended and one worked at the hospital. Only one of the participants felt that she had been fully informed by her community midwife about the referral.

Attending the clinic: reassurance

All participants (21) identified attendance at the hypertension clinic as having the potential to reduce their anxiety and provide reassurance. Fifteen accounts referred to reassurance in relation to blood pressure issues specifically.

Erm, quite nice ’cos, I knew my blood pressure was okay and it was just nice to know that I was being, checked up on it, was, kind of nice. […] Erm, you’re having extra care, so they’re detecting any problems before there’re any if you like, so you feel like you’re being looked after that bit more. (participant 20)

Other accounts referred to reassurance in terms of the general health of the pregnancy, possibly reflecting welcome for general antenatal care during early pregnancy rather than specific acknowledgement of the need for a specialist hypertension service.

Yes, it is for peace of mind, ’cause in this pregnancy especially I’ve not felt pregnant so I’ve been worried, ‘am I pregnant?’ so I like to go so they can tell the heartbeat is there. (participant 11)

Accounts appeared to suggest that reassurance resulted from the belief that the clinic provided superior antenatal care (17). In particular, accounts included references to: additional antenatal monitoring (14), access to hypertension expertise (14), access to special antenatal facilities or equipment (5) and access to a doctor or consultant (4). Access to specialist expertise was particularly valued.

Oh, I, I, I was thrilled that they’re, at the service that I was receiving, yes, that, they were being so cautious and careful to monitor, that this pregnancy would go, well, in safety. (participant 15)

[…] the community midwife’s wonderful don’t get me wrong, but, you know, […], but the doctor obviously the specialist knows that bit more on, they’ve studied more on one particular subject so they know answers to the questions that your midwife wouldn’t. (participant 16)

While it is clear that attendance at the hypertension clinic had a reassuring effect for most women, much of this was necessary in order to address concerns raised by the initial referral.

Anxious in a way, because you think, ‘Oh if,’ you know, ‘your midwife wants you to go there could be potential problems’, but on the other aspect, you’d sooner know, you know, earlier on and have it, close, more closely monitored so, a bit anxious but also a bit relieved if that makes (laughs) sense. (participant 16)

Negotiating normality

Many participants continued to have difficulties in understanding why they had been referred to a specialist clinic and what was distinct about the clinic, even after they had attended. Ten women pointed out, for example, that their blood pressure was normal and queried whether the care could have been provided by the community midwife or GP. Many participants (nine) indicated concerns over the appropriate use of limited resources.

Well basically the, they just do the same as your midwife does at the ante-natal, thing, they just take your blood an’ stuff like that, […] I just thought, ‘Well, they just basically do the same as me GP’s midwife does.’ So I don’t know why I just can’t go up there rather than, unless I’ve got a problem […] that my, midwife can’t deal with. (participant 12)

Yes, because you feel a bit, I don’t know whether you feel a bit guilty because every one else you think they might have really high blood pressure and they might get it earlier and I‘m sitting thinking,’ am I taking up someone else’s time where I know I’m gonna be OK. (participant 11)

Having identified hypertension as a potential problem and been offered the services of the hypertension clinic, some women then found themselves discharged from the clinic after a single appointment. This return to a ‘normal’ status was experienced in two distinct ways. Seven women were reassured that they were not required to re-attend the hypertension clinic.

Yes. The reassurance factor’s really important because, because it came as such a, a surprise that there’d been issues previously that I was unaware of, the reassurance now makes me realise that actually it hadn’t been, a big issue. […] They looked at what my blood pressure had been through this pregnancy and they said that there was no need for me to come back to the hypertension clinic because there’s, actually nothing wrong with my blood pressure’s absolutely fine, as it was in my first pregnancy. (participant 15)

However, accounts from three women suggested that discharge from the clinic could be a cause for concern. Women were concerned that, having being identified as at ‘high risk’ of developing high blood pressure during the pregnancy, they were not going to be monitored as frequently as they would like back in the community.

I was a bit, when she, when the hospital said, “Oh you don’t need to be referred again”, I was happy but I was quite worried, ’cos you have to wait about four weeks, to see between midwife visits and I was a bit, worried there. (participant 5)

The practice of contacting the women after tests only if there was a problem also appeared to cause concern over a prolonged period for some women (four) because it perpetuated uncertainties over their ‘normality’.

That is an issue because it’s been left that if there isn’t a problem they won’t contact you but, it’s like how long do you wait for them if, I’ve done the 24 hour test thing me blood pressure, sent that back and that was probably about a month ago, is it now do I presume it’s OK or could it be that they’ll call me back, so you’re left in limbo. It would’ve been good to at least have sent a letter or a telephone call to say ‘we’ve done your results, they’re OK, you don’t need to come back,’ so it’s like feedback. (participant 1)

Of those who described the extent to which they felt their attendance at the clinic was of value, ten women indicated that the appointment was worthwhile, five had mixed feelings and three considered it to be of no benefit.

Discussion

Specialist antenatal clinics offer advanced diagnostic services to women who have screened positive for risk in the community. They offer the potential to focus appropriate resources on women who most need specialised care. However, research in other areas, including cancer genetics7 and cervical cancer screening,8 suggests that identifying people as ‘at risk’ may have the effect of changing their status to a liminal one, somewhere between sick and healthy. Our findings suggest that being identified as ‘at risk’ of developing a hypertensive disorder of pregnancy may function in a similar way for women and may increase women’s anxiety and concern about their pregnancy, particularly at the time of referral to a specialist clinic. This study provides an important complement to earlier quantitative work, which has indicated that labelling women as ‘high risk’ during pregnancy can adversely affect their psychosocial state.9 Our study suggests that women are currently poorly informed about why they are referred to specialist clinics, what they can expect and what the benefits of attending such clinics offer over management in the community.

The initial referral to the clinic functioned as a way of conferring an ‘at risk’ status on women. Although welcomed by some women, the referral appeared to be the source of anxiety and distress for others, which could persist after attendance at the clinic. Reactions to being deemed to be ‘at risk’ varied, with some women accepting that their pregnancy required closer assessment and monitoring and others bewildered at their classification. Women who concluded that they were not genuinely at risk relied on ‘commonsense’10 ideas about their risk status, including the evidence that their blood pressure was not currently high. They found that the perception that they were not at risk was further reinforced by their attendance at the clinic. They remained confused about the role of the specialist clinic even after they had attended, and it was difficult for some to see any benefit in attending a clinic that appeared to carry out the same tests as their community midwife. Some of these women did not accept that they were genuinely ‘at risk’.

It would appear to be important to explain to women that a specialist antenatal clinic, while it seems to conduct the same tests and tasks as midwives in the community, is providing a distinct service, including more detailed and accurate assessment. There is otherwise a danger that women will perceive no value in attendance or that others are more ‘deserving’ of care. Appropriate support and information at the time of referral is clearly required. Simple measures such as better provision of information and advice from community midwives might address many of these problems but would require evaluation. In addition, giving women the opportunity to receive the results of all tests could also alleviate some anxiety. Recognising the impact of being discharged from the clinic is important in addressing the needs of women who are advised that they no longer need to attend.

There are several limitations to this study. The views expressed may be specific to the experience of being referred to the specialist hypertension clinic that we studied. Women at different stages in their pregnancy, using other specialist clinics, may feel differently. Those who chose to participate in the study might be different from those who chose not to take part, particularly as the method of recruitment meant that women had to approach the researcher. However, these accounts provide useful insights into women’s views of care arranged for those judged ‘at risk’ of developing hypertensive disorders of pregnancy. It is important that such views be accessed, not least because of the requirements of the Changing Childbirth initiative,11 which emphasises the need for women to be given choices and feel in control. Our findings can help inform organisation and provision of services, as well as future surveys of women’s experiences of antenatal care. These might include investigation of the extent to which different experiences of previous pregnancies predict different experiences of antenatal care.

Conclusions

The interface between community and secondary antenatal services needs improvement to minimise possible adverse effects of referral to specialist clinics, to provide women with explanations about why they are referred and to provide a service to women that is most suited to their emotional as well as physical needs.

Acknowledgements

We would like to thank the women who participated in this study and the NHS Modernisation Agency for funding the project. C.J. was partly supported by funding from Primary Care Trusts in Leicester, Leicestershire and Rutland. We thank Emma Pitchforth for useful comments on earlier drafts.

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