Unexpected Diagnosis of Fetal Abnormality: Women’s Encounters with Caregivers

Authors

  • Joan G. Lalor RM, RGN/RCN, RNT, MSc,

    Corresponding author
    1. 1Joan G. Lalor is a Health Research Board Clinical Midwifery Fellow and Doctoral candidate, 2Declan Devane is a Doctoral candidate and Midwifery Research Assistant, and 3Cecily M. Begley is Chair of Nursing and Midwifery and Director at the School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.
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  • 1 Declan Devane RM, RGN, RNT, MSc,

    1. 1Joan G. Lalor is a Health Research Board Clinical Midwifery Fellow and Doctoral candidate, 2Declan Devane is a Doctoral candidate and Midwifery Research Assistant, and 3Cecily M. Begley is Chair of Nursing and Midwifery and Director at the School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.
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  • and 2 Cecily M. Begley RM, MSc, PhD, FTCD 3

    1. 1Joan G. Lalor is a Health Research Board Clinical Midwifery Fellow and Doctoral candidate, 2Declan Devane is a Doctoral candidate and Midwifery Research Assistant, and 3Cecily M. Begley is Chair of Nursing and Midwifery and Director at the School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.
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  • This study was funded by the Health Research Board, Dublin, Ireland.

Joan G. Lalor, RM, RGN/RCN, RNT, MSc, School of Nursing and Midwifery, Trinity College Dublin, 24 D’Olier Street, Dublin 2, Ireland.

Abstract

ABSTRACT: Background: It is acknowledged that health professionals have difficulty with breaking bad news. However, relatively little research has been conducted on the experiences of women who have had a fetal anomaly detected at the routine pregnancy ultrasound examination. The study objective was to explore women’s experiences of encounters with caregivers after the diagnosis of fetal anomaly at the routine second trimester ultrasound scan. Methods: The theoretical perspective of symbolic interactionism guided this study design. A purposive sample of 38 women, at low risk of fetal abnormality, who received a diagnosis of a fetal abnormality in a tertiary referral center in Ireland, were recruited to participate. An in-depth interview was conducted within 4–6 weeks of the diagnosis. Data were collected between April 2004 and August 2005 and analyzed using the constant comparative method. Results: Six categories in relation to women’s encounters with caregivers emerged: information sharing, timing of referral, getting to see the expert, describing the anomaly, availability of written information, and continuity of caregiver. Once an anomaly was suspected, women wanted information quickly, including prompt referral to the fetal medicine specialist for confirmation of the diagnosis. Supplementary written information was seen as essential to enhance understanding and to assist women in informing significant others. Continuity of caregiver and empathy from staff were valued strongly. Conclusions: The way in which adverse diagnoses are communicated to parents leaves room for improvement. Health professionals should receive specific education on how to break bad news sensitively to a vulnerable population. A specialist midwifery or nursing role to provide support for parents after diagnosis is recommended. (BIRTH 34:1 March 2007)

Ultrasound examinations in pregnancy have become available to most women in developed countries as a routine aspect of care (1), with women in the United Kingdom (2,3) and Ireland (4) being offered at least 1 scan during their pregnancy. Currently, the debate in the literature about the risk/benefit equation of ultrasound screening is focused almost completely from the perspective of measuring clinical effect (1,5). Nevertheless, approximately 2–4 percent of pregnancies will be affected by a fetal anomaly, with a potential for detection at the routine scan. Such anomalies are responsible for approximately 30 percent of perinatal deaths in developed countries (6), and intervention to improve perinatal outcome should be welcomed. However, controversies about the routine use of ultrasound in pregnancy remain (7), partly because of the broad range in sensitivity rates quoted and the accompanying concerns with respect to the consequent benefits in maternal and perinatal outcomes (1,8).

Although the current discourse on the complexities of prenatal screening and diagnosis continues, individual encounters are ongoing among women who have received a diagnosis of fetal abnormality and health professionals. Such encounters involve complex decisions about pregnancy outcomes. Professionals’ attitudes to screening, and subsequent pregnancy management after an adverse diagnosis, are undoubtedly influential in women’s experiences of this situation. Health professionals and members of the public who live outside Ireland may question the value of offering prenatal screening in a country that does not allow termination of pregnancy if an anomaly is detected. However, Farrant’s (9) seminal work on the attitudes of women and health professionals toward prenatal screening and termination for fetal abnormality in 1980 identified that health professionals, in general, viewed detection of fetal anomalies as being the goal of a screening program, whereas women participated to seek reassurance of normality. This fundamental difference in the perceptions of the purpose of screening partly explains why women who would not consider abortion may still take part in screening (10). Although women may worry that something is wrong with the baby (11,12), this feeling does not necessarily imply that they prepare themselves for receiving bad news.

Although practitioners find giving bad news a difficult task (13–15) and receiving such news in relation to fetal well-being is associated with acute grief reactions for parents (16,17), little research has been conducted on communicating bad news in pregnancy (18). The psychological effects of receiving an unexpected diagnosis of fetal anomaly have been predominantly explored through qualitative analysis of women’s experiences or, alternatively, through empirical measurements of level of trauma at various junctures. Frequently, comparisons are made between the psychological outcomes of women who chose to continue the pregnancy and the outcomes of women who have chosen to terminate it through the use of a multitude of standardized instruments that measure concepts such as grief, despair, coping, anxiety, and depression (19–23). This focus on loss and bereavement has created a situation whereby researchers have examined women’s experience of termination after prenatal diagnosis with relatively few considering the issues pertinent to women who choose to continue the pregnancy (12,24).

When exploring the effect of the diagnosis on women, thought must be given to the likely outcome for the fetus. Most conditions are not lethal but may carry a significant risk of mental or physical handicap. Since few newborns will benefit from antenatal diagnosis and in utero treatment (25) or immediate specialized treatment in the neonatal period, some authors have questioned the value of antenatal identification of anomalies for parents when such a therapeutic vacuum persists (26).

Developments in prenatal diagnostic techniques over the past 20 years have led to an increase in selective termination of pregnancy (27), in particular following the diagnosis of anomalies that are lethal or associated with risk of handicap (28,29). Early studies have suggested that if an abnormality is detected, parents want to be informed, even though some have suggested that women remained “emotionally unbalanced” for the remainder of the pregnancy (30, p. 78). Assumptions that parental reactions are based on objective measures of fetal outcome, such as mortality and morbidity, and extrapolation of data from women’s experience of carrying a baby with such anomalies to other women where the prognosis is uncertain rather than lethal, may result in insensitive encounters with caregivers, and may culminate in women receiving an inappropriate level of care (31).

Chitty et al’s (32) analysis of the experiences of 5 couples who chose to continue the pregnancy after a diagnosis of a lethal anomaly reinforces concerns about the inappropriateness of care provided by some health professionals. Women described the unsuitability of routine antenatal clinics for ongoing care, and a lack of continuity of caregiver led to some women being treated insensitively by staff, who did not seem to be aware of the diagnosis and interacted with the woman as if a normal outcome was expected. Chitty et al (32) expressed concern over the lack of experienced staff in engaging with couples who choose to continue the pregnancy, resulting in ill-preparedness in providing appropriate care (33,34).

Several studies have identified women’s dissatisfaction with the way in which the diagnosis was conveyed, supporting previous study findings that communication with caregivers is problematic (24,32,33,35–37). In jurisdictions where termination of pregnancy is available, women have expressed discontent that caregivers seemed to display little understanding of their decision to continue the pregnancy. This perception suggests that personally held views of the health professional to the effect that termination is more appropriate can have a negative effect on parents (28), and leave them feeling abandoned by the system (33,34). Some authors have suggested that the decision to continue the pregnancy is not always clear-cut, may evolve over time, and may be followed by a process of revisiting the decision throughout the remainder of the pregnancy in order to cope (36). Irrespective of whether the decision to continue the pregnancy is passive or active, Statham et al observed that parents need support from health professionals that recognizes issues pertinent to the parents, such as difficulties traveling to antenatal visits in specialist centers, disruption to home life, and uncertainty about what to do if labor begins unexpectedly (12).

When reproductive choices are limited, presumptions are made that being forewarned of the presence of a genetic disorder provides the opportunity for emotional preparation for the birth and time to gain an understanding of the possible difficulties that lie ahead. Issues such as breaking the news have not been systematically investigated. In Ireland, termination of pregnancy is not available within the jurisdiction; continuing the pregnancy after an adverse diagnosis is the dominant course of action. This article explores the experiences of women’s encounters with caregivers after the diagnosis of fetal anomaly on routine second trimester ultrasound examination.

Methods

The women in this study were part of a larger longitudinal study exploring women’s experiences of carrying a baby with a fetal abnormality up to the birth and beyond. Given that the focus of this study was women’s interactions with their caregivers, the theoretical perspective of symbolic interactionism (38) was used to guide this aspect of the study. This perspective is based on the premise that human behavior develops through interaction with others and the meanings that they attribute to the situation.

Data were collected between April 2004 and August 2005 through in-depth interviews conducted at individual women’s homes by the principal investigator (J.G.L.). Each interview lasted between 1 and 3 hours, was recorded, transcribed verbatim, and analyzed using the constant comparative method (39). No preset interview questions were asked other than each woman being asked to describe how she felt when she discovered she was pregnant and, later, how she felt on the day she received the initial news that the ultrasound examination had revealed a cause for concern.

The study site is a tertiary referral maternity hospital in Dublin, Ireland, with 3 designated fetal medicine consultants and a specialist registrar. All women who are booked for birth in the center are offered a routine second trimester ultrasound scan. Women were purposively sampled on the basis of the fetal diagnosis to ensure experiences were not limited to women who were pregnant with fetuses with a specific type or prognostic severity of anomaly.

Ethical approval for the study was obtained from the study site and the Faculty of Health Sciences Ethics Committee, Trinity College Dublin. Women were eligible for inclusion if they had no previously known risk for congenital fetal anomaly, a diagnosis of fetal abnormality in the current pregnancy, could communicate in English, and were Irish or had lived predominantly in Ireland if born elsewhere. Women booked for birth at the tertiary center received the initial diagnosis from either a midwife or a radiographer in the routine ultrasound clinic, and those booked for birth elsewhere and referred for specialist opinion received the initial information from midwives, radiographers, or obstetricians.

The fetal medicine specialist(s) involved in the diagnosis assessed women for eligibility, provided information, and answered all questions related to the study. In addition, an information pack inviting participation and detailing the purpose of the study and all tenets of informed consent was mailed to the women’s homes by the fetal medicine staff. All women who were invited to participate were unknown to the researchers until consent to take part was received, and data were only collected about those giving consent. Women who chose not to participate were not required to provide a reason for so choosing. Women had up to 4 weeks from the initial invitation to consider participating to ensure adequate time to make their decision and to allow for further testing as appropriate. One follow-up reminder was sent 2 weeks after the initial invitation, and nonresponders to the reminder were deemed to have chosen not to participate. Postal recruitment was chosen to ensure women would not feel that their decision to participate, or not, could have any influence on their care because clinicians were unaware of the woman’s decision.

Those choosing to participate returned a written consent form or contacted the principal investigator by telephone. They gave their written consent before and after the interview. Interviews were conducted within 4–6 weeks of the diagnosis. All participants were offered access to an external counselor in addition to support services routinely available within the study site. Pseudonyms are used to protect participants’ identities.

Data analysis

Data collection and analysis were performed in parallel. Data were analyzed using the constant comparative method (39), with ongoing analysis used to facilitate the development of emergent categories from interviews with subsequent women.

The constant comparative method is a systematic approach to data analysis. To minimize the risk of searching for incidents to confirm or deny theoretical ideas or phenomena that may exist in the literature, researchers are challenged to set aside previous knowledge and speculation as much as possible. This process necessarily involves deferral of a comprehensive literature search until completion of the analysis to ensure that emerging categories are closely related to the population being explored (40–42). Data are collected and analyzed into initial categories. These categories are developed and refined as repeated visits to the field are made to collect additional data, and hypotheses specific to the emergent categories rather than the literature are tested (e.g., greater depth of detail given at the initial disclosure is associated with higher perceived satisfaction with care).

This systematic method of analysis involves identifying a specific phenomenon and exploring the context and intervening conditions that affect a participant’s experience of the phenomenon. Women’s responses to receiving the diagnosis were analyzed based on whether the initial diagnosis was given in a regional center (requiring referral for confirmation) or in a routine ultrasound clinic in the tertiary center, and were grouped initially on the basis of encounters with caregivers that women found helpful or unhelpful. Since these women were participating in a larger study involving repeated in-depth interviews, the rigor of analysis was verified with each participant at subsequent interviews (43), with an expert researcher (C.M.B.), and on completion of data collection with 9 randomly selected participants. Finally, our findings were compared with studies in the literature in the substantive area.

Results

Between April 2004 and August 2005, 62 women with a range of fetal anomalies were invited to participate, of whom 38 (61%) women with 41 fetuses (39 anomalous) agreed to take part. Ten women were primigravidas, 2 of whom were pregnant with twins with each having 1 fetus with a lethal or likely lethal anomaly, and 1 apparently normal fetus. One multigravida was pregnant with twins, both with lethal or likely lethal anomalies. Eight women (1 primigravida and 7 multigravidas) chose to terminate their pregnancy outside the jurisdiction. Each of these women was carrying a fetus with one of the following anomalies: anencephaly (n = 3), hydrocephalus, triploidy, trisomy 18, trisomy 21, and diaphragmatic hernia. These women’s experiences of their care in Ireland before traveling to the United Kingdom for termination are included in the data presented. Classification of fetal anomalies and maternal sociodemographic characteristics are presented in Tables 1 and 2.

Table 1. Classification of Anomalies (41 Fetuses, 39 with Anomalies)*
TypeDescription
  • *

    Based on the classification of Statham et al (24).

1.Lethal, normal karyotype (e.g., anencephaly, Potter’s syndrome)
2.Significant mental/physical disability, with normal karyotype (e.g., neural tube defect, limb abnormalities, Dandy-Walker malformation)
3.Significant structural abnormality with an option to repair carrying a risk of mortality, with normal karyotype (e.g., diaphragmatic hernia, abdominal wall defects)
4.Significant structural abnormality with an option to repair
 (a) with a significant risk of mortality (e.g., diaphragmatic hernia, abdominal wall defects)
 (b) without a significant risk of mortality (e.g., talipes, some renal anomalies)
5.Abnormal karyotype ± structural abnormality (e.g., trisomy 13, 18, 21; triploidy, Turner’s syndrome)
6.Suspicious (structural or placental anomalous findings with normal karyotype)
Table 2. Maternal Sociodemographic Characteristics (n = 38)
DescriptionData
Age at diagnosis (range 18–44 yr)Mean (yr) 33SD ± 5.53
Booking siteTertiary center (n = 29)Regional center (n = 9)
Education levelUniversity (n = 14)High school (n = 24)
Parity (range 1–10)Primigravida (n = 10)Multigravida (n = 28)
Socioeconomic statusClass 1–3 (n = 26)Class 4–5 (n = 12)

The 6 main categories in relation to women’s encounters with caregivers that emerged from the data comprised information sharing, timing of referral, getting to see the expert, describing the anomaly to parents, availability of written information, and continuity of caregiver.

Information sharing

Initial diagnosis

The data demonstrated that women positively anticipated the ultrasound examination and were looking forward to “seeing” their baby. Since the scan was offered routinely, women viewed it as non-threatening in nature. Because the women were not selected for screening based on the presence of fetal anomaly risk criteria, all described being shocked to discover that everything was not normal. Women who received clear information from caregivers at this initial point in the diagnostic process were more satisfied with their interaction with the caregiver than those who had inadequate responses to their questions.

I said (looking at the screen) that doesn’t look right … she [midwife] didn’t fudge around … it looks like some of the bowel has come out … but it’s operable … at least we knew. (Fay, Type 4a)

We didn’t have any reason to think there would be a problem, but the [midwife] picked it up straight away … she gave us quite a bit of information and then said, look, you know you’ll have to come back and talk to an obstetrician (for confirmation). (Muireann, Type 1)

Women described a need for prompt information about their baby’s anomaly, and their perceived difficulty in accessing information as quickly as they would have liked added to their distress.

I was trying to find out what about the other organs, was there something else (affected), where was this coming from, where was it originating from, but she [the midwife] couldn’t answer all the questions … (referred to consultant). Now I wasn’t leaving there that day without seeing [the consultant]. (Erin, Type 4b)

All women who had their routine scan in regional centers, where the procedure was to have the examination performed by a radiographer and subsequently receive results from an obstetrician, were unhappy with this process. During the examination, they felt frustrated and distraught when the suspicion of an anomaly was raised, and they thought that the radiographer/radiologist was insensitive to their questions or need for information.

So then she scanned me, and then a doctor [radiologist] came in and he just basically pointed out the problem to her and then he walked back out again, there was no talking. I said, is there something wrong? She said, I can’t read it. (Kasey, Type 1)

Many women thought that they did not receive enough information at the initial scan and accessed additional information resources. This response was influenced by access to the Internet and information-seeking preferences; that is, some women expressed a high need for information, whereas others commented on needing time to process what information they had already been given. It was not unusual for women to search the Internet with an uncertain diagnosis while awaiting an appointment for the fetal medicine specialist. However, information sources that were not subjected to critical appraisal by health professionals were not without consequence:

If I had been told even in passing don’t be alarmed by what you read on it. I have seen some horrific stuff on the Internet. I actually feel now that the information should be available quicker. The Internet is a very dangerous tool. (Blannad, Type 4b)

Timing of referral

All women said rapid access to the fetal medicine specialist, preferably within 24 hours of the initial ultrasound scan, was desirable. Women experienced most distress when waiting longer than this period and especially if the wait spanned a weekend, when they believed access to information was hindered.

If I could have seen [fetal medicine specialist] straight away I would definitely take it. The waiting was the worst. It really wasn’t nice. (Emma, twins, Type 1)

Getting To see the expert

Women had high expectations of the visit with the fetal medicine specialist and described it in terms of finally getting the facts from the “expert.” At this point, all women had described the destructiveness and stress of “not knowing” the diagnosis and were eagerly anticipating receiving a definitive result irrespective of how poor the outcome might be. Most women were positive about their encounter with the fetal medicine specialist; however, some women described situations where they were dissatisfied with this encounter:

[The consultant] said that, yeah, it was a multicystic kidney and then threw in an association with a chromosome disorder … but he wasn’t facing me. Edward’s disease and it would be fatal, they could do an amniocentesis if we wanted. Now that whole conversation went very fast and the consultant never looked at me face to face. (Erin, Type 4b)

Dissatisfaction was also expressed in terms of perceived insensitivity of the specialist delivering the news, and of women not receiving sufficient detail about the prognosis or treatment available as quickly as they would have wished. Women whose babies had treatable anomalies also expressed acute distress and grief at this initial point of diagnosis:

As soon as you get into the realm of possibility, you need to be much more supportive, and take more time to explain issues. (Maoliosa, Type 4b)

It’s not just the condition … it’s is there anything else or is it worse than they think it is? (Trina, Type 4b)

Most women mentioned the effect of the presence of others at the examination in the fetal medicine unit. Since the urgency to receive a diagnosis was paramount, women thought that their distress was compounded by being first scanned by a trainee in fetal medicine:

[The consultant said] ‘I’m going to let the registrar look first, then I will come back and have a look.’ But when she [specialist registrar] started looking, I just started crying, panic and fear I think. I needed him back in. We had a bad night. I just couldn’t wait any longer. (Tara, Type 1)

Nevertheless, all of the women acknowledged the need for training and, once the trainee was properly introduced, had no difficulty with their presence. Although most women were satisfied with their first encounter at the fetal medicine unit, they described practices they found particularly supportive and unsupportive when receiving the diagnosis.

Describing the anomaly to parents

Women consistently raised the issue of health care professionals’ use of unsuitable language, including the inappropriate use of medical terminology:

“10 percent mortality,” it didn’t register with me. Now a 1-in-10 chance your baby could die is high … you need to know to prepare. (Fay, Type 4a)

Survival in the long-term may mean something to a medical practitioner; it doesn’t mean anything to me … in accounting terms it’s more than 5 years. (Tara, Type 1)

Most women said that the diagnosis was explained through the use of a combination of fetal ultrasound images, percentile charts, and diagrams. They all commented that the use of visual images enhanced their understanding of what, at the time, seemed incomprehensible:

I had never heard of it … they sat me at the computer, it made things quite clear. (Doireann, Type 1)

Then the consultant sat the two of us down and he even drew out a little diagram of what kidneys looked like, the whole thing from beginning to end, and then I knew it wasn’t a big problem. (Aisling, Type 4b)

Availability of written information

All women described the need for supplementary written information either after the initial scan or after the appointment with the fetal medicine specialist. They described the usefulness of such information in several ways, from protecting parents through referral to appropriate Internet sites, enhancing recall and understanding, to assisting in explaining the problem to significant others:

It would sort out things, rather than have us looking at American sites, here we are in (the hospital) and we can’t get (written) information … just to be able to take it away. (Fay, Type 4a)

Well, it was really hard to convince our parents … miracles can happen (they’d say). You don’t really want people saying it’s going to be okay. So for them, yeah, it would be easier to see it written in black and white. (Laoise, twins one Type 1)

Continuity of caregiver

All women who continued the pregnancy valued the continuity of seeing the same clinician(s) on repeated visits and described the importance of developing a trusting relationship. On some occasions, women were offered shared care with the referral site to minimize traveling to appointments or were discharged back to the referral site to facilitate birth within their own community when the outcome was incompatible with life. Women in these situations reported a lack of continuity of care in the regional unit, which led to fear and frustration:

I have never seen the same two people … I am very wary of going up there now. (Niamh, Type 2b)

All women appreciated an opportunity to contact the relevant health professionals with queries that may have arisen between one appointment and the next, and were particularly receptive to gestures indicating a caring and sensitive approach to their particular needs:

You are going to have some questions when you go home, so you can ring me [consultant] or the midwife tomorrow and he circled the number and said that is no problem. (Kerrie, Type 2b)

I felt they cared—I was not just another interesting science experiment. They said we know this is very disappointing for us—focusing in on the emotional. (Doireann, Type 1)

Circumstances deemed as insensitive by women included excluding the partner from the discussion and the consultant appearing to be rushed and leaving before it was established if the parents understood the diagnosis. All women identified a need to receive ongoing and individualized support from the health care team, irrespective of the significance of the anomaly:

I didn’t need frequent scans, but [you need] somebody you can ring … you need pregnancy information as well as support. (Erin, Type 4b)

Women identified this support as most desirable if it came from a midwife with expertise in the area, particularly if it could be provided in their home environment and away from the tension and busyness associated with the fetal medicine clinic:

… you need someone to tread lightly with you, if they have midwifery experience you can ask pregnancy questions. I’d be afraid of a psychiatrist, they could mess with your head and you’d end up worse. (Heather, Type 1)

You are less inclined to bother them [clinical staff], you know how busy they are … someone coming out to me at home is better. (Ciara, Type 5)

Additional reasons cited by the women for choosing a midwife to provide this support included having a skilled person to ask questions on an ongoing basis about the specific anomaly, and pregnancy, delivery, and postnatal issues. Receiving support from the departments of social work or psychiatry was associated with social stigma by women and was seen to reflect an inability to cope:

You need someone like a midwife who has the [clinical] background as he/she will fully understand what we are going through. (Aoife, Type 1)

No one would think there is anything is wrong if you say the midwife is calling to see me because there are problems, but the social worker—I think there is a stigma attached to that. (Maeve, type 1)

Discussion

Receiving an adverse diagnosis was traumatic for all participants irrespective of the severity of the anomaly, as previously reported in other studies (16,24,44). Seeking information is a common coping strategy for anyone facing a stressful event (45), and women in this study, in common with others (6), consistently described the need to receive as much information as possible at the point of diagnosis, to enable them to come to terms with the news, irrespective of the nature of the outcome. Dissatisfaction with the level of information received was particularly evident when the suspicion of anomaly was raised in a regional unit, which is consistent with the experiences of women elsewhere who continued the pregnancy after receiving an adverse diagnosis (24). This finding may be due to operator uncertainty about the diagnosis when compared with clinicians in specialist centers. The authors acknowledge that the presence of a fetal medicine specialist in all maternity units is neither feasible nor desirable; however, full disclosure about what is seen by the operator before referral to a tertiary unit is necessary.

Women were particularly distressed when the operator performing the initial scan did not respond to questioning. If limitations are imposed on operators at a local level as to how much he or she is permitted to discuss, immediate access to an appropriately trained (16) professional should be available to explain the findings to the woman. In addition, referral to a fetal medicine specialist, preferably within 24 hours, was seen to limit the distress associated with an uncertain diagnosis.

Positive aspects of care included staff providing guidance to appropriate Internet sites, communicating clearly without the use of jargon, and enhancing understanding through the use of diagrams and other visual aids such as the ultrasound screen and percentile charts. As in other studies (18,33,44,46), women valued the continuity of seeing the same health care professional(s) on repeat visits. When continuity of care was not available, it led to a degree of frustration and fear. The decreasing amount of time available to spend with individual clients and families has been identified previously as a barrier to effective communication (46). Women were particularly receptive to gestures they perceived as indicating a considerate and sensitive approach to care, such as being telephoned at home and receiving acknowledgment of the magnitude of their loss.

This study highlights that all women, including those whose babies were diagnosed with treatable anomalies, require acknowledgment of their concerns, which related to the possibility of additional abnormalities being discovered. Women were sensitive to the pressures that clinic staff were under and indicated that their need for skilled support could be met outside the clinic environment. Because the ongoing need to access information about the pregnancy and birth was seen as fundamental to coping with the situation, women suggested the most appropriate person to provide this aspect of care would be a midwife with expertise in the area. It is possible that this recommendation may have been influenced by participants knowing that the principal researcher was a midwife. Nevertheless, it does not detract from participants’ perception that a midwife was the most appropriate person to provide the skilled support they needed outside the clinic environment. Provision of supplementary written leaflets was identified as useful in enhancing women’s recall, assisting them in informing significant others, and helping them to understand the diagnosis (47).

The context of the study is undoubtedly relevant since continuing the pregnancy after diagnosis (irrespective of the outcome for the fetus) was the “norm” in this study setting. Several important differences between our findings and international experiences have emerged, suggesting that social and cultural beliefs may influence professional attitudes to pregnancy management after an adverse diagnosis. Internationally, evidence suggests that the care received by women who choose to continue their pregnancy is compromised in settings where health professionals view termination as a more appropriate decision (30,32,33,48,49). This factor did not emerge in our study.

Unlike other studies in this area, the seriousness of an anomaly was not an equally reliable predictor of whether or not parents chose to continue the pregnancy (50–52). The data suggest that professional attitudes to screening and pregnancy management are influential in interactions with women and support Maijala et al’s (16) suggestion that parents’ experiences of care can be either enhanced or weakened by caregivers’ actions. Although the study findings are influenced by the context, the prospective design, inclusion of a wide range of anomalies, and relatively high participation rate in this study enhance the potential for these findings to contribute to the knowledge base of health professionals involved in caring for women who choose to continue their pregnancy after the diagnosis of a fetal anomaly.

Implications for care

Communication issues are a central component to care provision in this area, and although women, in general, expressed satisfaction with their encounters with the fetal medicine team, this study suggests a need for improvement in how an adverse diagnosis is communicated to parents when first suspected. It would seem sensible and entirely reasonable that those performing the initial scan respond to parents’ questions honestly with whatever information is available at that time. Professional boundaries that prevent this response, real or otherwise, mitigate against providing women with the sensitive care they need and deserve. Subsequent prompt referral to fetal medicine specialists when uncertainty exists is essential, followed by the provision of written information resources and support outside the clinic, preferably from a specialist midwife or nurse. Health professionals in the area of prenatal diagnosis should have access to education on how to break bad news sensitively to a vulnerable population since negative consequences are significant for all when unsupportive encounters occur.

Conclusions

This study highlights the influence that personally held attitudes toward pregnancy management after an adverse diagnosis can have on women’s care. To avoid unsupportive encounters between caregivers and women, any education in this area should endeavor to assist health professionals to identify their personal beliefs and consider the possible influence they may have on women’s experiences when caregivers’ and women’s choices diverge. Acknowledging and managing personal views in the clinical setting have the potential to improve care irrespective of national boundaries. Continuity of caregiver was highly valued by these women, and we suggest establishing a specialist midwifery role to provide ongoing support for parents to meet this need.

Acknowledgments

This study could not have taken place without the enthusiastic participation of the women involved, to whom we are deeply indebted. We also give thanks to the staff at the study site, who informed women about the study and cared for them throughout this difficult time. Joan Lalor is supported by a Clinical Midwifery Research Fellowship from the Health Research Board, Dublin, Ireland.

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