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Journal of Reproductive and Infant

Psychology
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Women’s experience of care when

undergoing termination of pregnancy
for fetal anomaly in England
a b
J. Fisher & C. Lafarge
a
Antenatal Results and Choices, London, UK
b
School of Psychology, University of West London, Brentford, UK
Published online: 10 Nov 2014.

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To cite this article: J. Fisher & C. Lafarge (2015) Women’s experience of care when undergoing
termination of pregnancy for fetal anomaly in England, Journal of Reproductive and Infant
Psychology, 33:1, 69-87, DOI: 10.1080/02646838.2014.970149

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 Journal of Reproductive and Infant Psychology, 2015
Vol. 33, No. 1, 69–87, http://dx.doi.org/10.1080/02646838.2014.970149

Women’s experience of care when undergoing termination of

pregnancy for fetal anomaly in England
J. Fishera* and C. Lafargeb
a
Antenatal Results and Choices, London, UK; bSchool of Psychology, University of West
London, Brentford, UK
(Received 17 February 2014; accepted 24 September 2014)
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Objective: This study investigated women’s experience of care when undergoing

termination of pregnancy for fetal anomaly (TOPFA) with a view to assisting
healthcare professionals in providing optimum care to women. Background:
Technological developments in antenatal screening and testing mean more
women are given a prenatal diagnosis of fetal anomaly and confront the possibil-
ity of terminating the pregnancy. TOPFA is a psychologically significant life
event, but there is limited evidence on how women perceive their termination
care. Methods: A cross-sectional online survey was used to elicit qualitative
data as part of a study examining women’s experience of the TOPFA procedure,
in particular the choice of method. Women were asked to comment on what they
had found helpful and unhelpful in their termination care. Participants were
recruited from a national support organisation. A total of 361 women offered
qualitative comments, which were analysed using thematic analysis. Results:
Women’s experience of termination care varied. Five themes were identified as
underpinning what women considered ‘good care’: being cared for in a time-
frame and environment that feels right; receiving the right level of care; the role
of healthcare professionals and support organisations; acknowledging women’s
particular circumstances; and enabling women to make choices. Regarding the
last theme, women particularly valued being offered a choice of termination
method. Conclusions: The findings suggest that many women undergoing
TOPFA perceived their care as lacking in some way. Recommendations on
improving practice are made and areas of further research are suggested, which
may deepen knowledge on how best to care for these women.
Keywords: termination of pregnancy for fetal abnormality; perception of care;
thematic analysis; women’s preferences; prenatal diagnosis; antenatal screening

Introduction
All pregnant women in England are offered antenatal screening tests for genetic
and structural fetal anomalies, overseen by the United Kingdom National Screening
Committee (UKNSC, 2013). National programmes currently include tests for sickle
cell and thalassaemia, Down’s syndrome and a mid-pregnancy ultrasound scan to
screen for various anomalies. In the past decade there has been an increase in
screening provision in the first trimester of pregnancy, with the aim of offering ear-
lier reassurance to most and enabling women opting to end the pregnancy to do so
at an earlier stage (Nicolaides, 2011). At the time of writing, non-invasive prenatal

*Corresponding author. Email: [email protected]

© 2014 Society for Reproductive and Infant Psychology

 70 J. Fisher and C. Lafarge

testing (NIPT) for Down’s syndrome is widely available in the UK private sector
from 10 weeks’ gestation. NIPT is more accurate than standard Down’s syndrome
screening tests as it has a detection rate above 99% (Nicolaides, Syngelaki, Ashoor,
Birdir, & Touzet, 2012). An evaluation study funded by the National Institute for
Health Research is currently underway to validate test performance in a ‘medium
risk’ population and examine how NIPT might best be implemented into the
National Health Service (NHS) (Chitty, Hill, White, Wright, & Morris, 2012).
While detection rates for fetal anomaly continue to improve, there are still few
in utero treatments available for major anomalies. Therefore, after a prenatal diag-
nosis women have the option of continuing or terminating the pregnancy. The
majority of women in England choose the latter option when Down’s syndrome or
major structural anomalies are indicated (Boyd et al., 2008; Morris & Springett,
2014). Termination of pregnancy for fetal anomaly (TOPFA) is legally sanctioned,
under ‘Ground E’ of the abortion law covering England, Scotland and Wales
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(Abortion Act 1967, as amended in Human Fertilisation and Embryology Act,

1990). The ground states that the anomaly diagnosed must represent ‘substantial
risk’ that the child if born would be ‘seriously handicapped’. Neither phrase is fur-
ther defined and there is no gestational limit applied.
Research into the psychosocial sequelae of TOPFA suggests that it is a traumatic
life event with potentially significant and lasting emotional impact (Korenromp,
Page-Christiaens, van den Bout, Mulder, & Visser, 2009; Lafarge, Mitchell, & Fox,
2013; McCoyd, 2007; Rillstone & Hutchinson, 2001; Statham, Solomou, & Green,
2001). Negative psychological consequences include posttraumatic stress, compli-
cated grief and depression (Davies, Gledhill, McFadyen, Whitlow, & Economides,
2005; Kersting et al., 2005; Korenromp et al., 2005). Evidence also indicates that
healthcare professionals’ behaviour – most notably their ability to provide empathetic
care – impacts women’s experience of TOPFA (Asplin, Wessel, Marions, &
Georgsson Öhman, 2013; Koponen, Laaksonen, & Vehkakoski, 2013; McCoyd,
2009; Statham, 2002).
There is also evidence that it is helpful for women to have a choice of termination
method in the circumstances of TOPFA, i.e. the opportunity to decide whether a sur-
gical procedure under general anaesthetic or a medical induction of labour best suits
their individual coping style (Kerns et al., 2012). It should be noted that both
methods have a similar risk profile (Bryant, Grimes, Garrett, & Stuart, 2011; Kelly,
Suddes, Howel, Hewison, & Robson, 2010). Evidence also suggests that there is a
relationship between satisfaction with some aspects of care (e.g. reaching a diagnosis
and sensitivity towards the baby) and psychological adjustment following TOPFA
(Statham et al., 2001). As TOPFA is psychologically painful for women, one may
assume that co-ordinated, high-quality care based on individual needs and delivered
in an empathetic way would, in theory, promote psychological adjustment.
Guidance issued in 2010 by the Royal College of Obstetricians and Gynaecolo-
gists (RCOG) states that TOPFA management should include provision of choice
of termination method, non-judgemental and supportive care from staff and well-
organised follow-up care (RCOG, 2010). This updated previous guidance which
had also emphasised continuity of care and advocated that termination care be
delivered by ‘expert sympathetic staff’ (RCOG, 1996). There is, however, limited
evidence on how well these directives are being implemented in practice. This is
particularly relevant because the low incidence of TOPFA (2,732 in England and
Wales in 2013, representing 1.5% of all abortions) means that most healthcare
 Journal of Reproductive and Infant Psychology 71

professionals will not have extensive experience of caring for women undergoing
TOPFA. The number of women undergoing TOPFA continues to rise steadily,
mainly due to developments in screening technologies leading to increased detec-
tion of major anomalies (Department of Health, 2012, 2013, 2014; Korenromp,
Page-Christiaens, van den Bout, Mulder, Hunfeld et al., 2007; Lewis, Hill, Silcock,
Daley, & Chitty, 2014). Yet the number of TOPFA cases most healthcare profes-
sionals manage will remain relatively small so understanding women’s experience
of care is essential in order to improve care provision.
This article reports on the qualitative element of a study undertaken by Antena-
tal Results and Choices (ARC) into women’s experience of care when undergoing
TOPFA, which focused particularly on the choice of method of termination. ARC
is a UK-based charity that has a remit to offer non-directive support and informa-
tion to parents through antenatal testing and its consequences. ARC has contact
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with between 500 and 700 women annually who have undergone TOPFA. In recent
years the ARC helpline team noted a rise in the number of women contacting the
helpline expressing concern that they had not been offered the option of a surgical
termination of pregnancy by their NHS hospital, particularly if the diagnosis of
fetal anomaly was made after 13 weeks’ gestation. In order to investigate this
apparent lack of adherence to clinical guidance, ARC was awarded a voluntary sec-
tor grant from the Department of Health for England. This enabled ARC to con-
vene an expert advisory group to guide the research into women’s experience of
TOPFA with a view to recommending improvements in care pathways. A self-
administered online survey was developed with help from the advisory group to
investigate whether women in England were given a choice of termination method
and to enable respondents to comment on their experience of care. The results of
the quantitative part of the survey pertaining to the procedure and the choice of
method are reported elsewhere (Fisher, Lohr, Lafarge & Robson, 2014). This article
adds to the limited literature regarding women’s perceptions of care and, by doing
so, provides an opportunity for healthcare professionals to develop their knowledge
in this challenging area.

Methods
Design
A cross-sectional, retrospective, online survey was used to assess women’s experi-
ences of the procedure of TOPFA, in particular the choice of termination method,
and to enable respondents to comment on their experience of care.

Participants
Participants were recruited from ARC’s membership of women who have had a
TOPFA. ARC membership mainly comprises parents who have had a TOPFA and
opted to join the organisation’s mailing list. ARC members have the opportunity to
share their stories in the ARC newsletter, the password-protected online forum and
during facilitated face-to-face parents’ meetings. Information about the study,
including the link to the survey, was emailed to 600 ARC members. The study was
also promoted on the ARC website and in a post on their online forum. No
limitation was put on the time elapsed since TOPFA or any obstetric characteristics
(e.g. gestational age at TOPFA).
 72 J. Fisher and C. Lafarge

Data collection
The survey was developed with help from the expert advisory group, which com-
prised professionals from fetal medicine, obstetrics, antenatal screening, maternity
and abortion care, and NHS commissioning. It consisted of closed questions about
women’s experiences of the TOPFA procedure (e.g. the information received, pro-
vided by whom) and the choice of method (e.g. ‘what method of termination was
offered to you?’). For the qualitative element, participants were invited to respond
to two open-ended questions about what they had found helpful and unhelpful in
their care when undergoing TOPFA (‘Thinking about how your termination proce-
dure was managed, what did you find helpful?’, ‘And what did you find unhelp-
ful?’). Information about the terminated pregnancy (e.g. gestational age, type of
anomaly) was also collected. The entire survey was piloted internally at ARC and a
pilot interview was conducted with one participant. These resulted in no changes
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being made. The survey was hosted on a secure website (SurveyMonkey; www.sur
veymonkey.com) using the enhanced security option. This option maximises partici-
pants’ anonymity by creating a secure connection between an individual and a web
server through the encryption of the information exchanged. Data collection took
place between January and March 2012.

Ethics
A one-page summary describing the project was emailed to the National Research
Ethics Service (NRES) queries line to ascertain whether ethical approval was
required. The NRES advised that ethical approval was not required for this project.
Every effort was made to conduct the survey in accordance with the ethical stan-
dards specific to online research (British Psychological Society, 2013; Knussen &
McFadyen, 2010). Potential participants received information about the aim of the
survey and its sponsors. Participants were informed that their data would be kept
confidential. They could withdraw from the survey at any time. Given the sensitiv-
ity of the subject matter, participants’ potential for distress was acknowledged.
They were advised to contact ARC’s helpline should they need to speak to some-
one about the study. They also had access to ARC’s UK network of support volun-
teers. The ARC staff team is in regular contact with its membership, therefore they
are in a unique position to understand women’s expectations and issues, and are
accustomed to dealing with parents’ intense emotional reactions. Thus, the expert
advisory group was confident that any distress would be managed in the most
appropriate and sensitive way. To safeguard participants’ anonymity, only the
research team (the article’s authors) had access to the data. Data were downloaded
in password-protected computers and IP addresses removed from the dataset.

Analysis
The data were analysed using thematic analysis. Thematic analysis is an inductive
method of data analysis widely used in reproductive health research (Hadjigeorgiou
& Coxon, 2013; Malik & Coulson, 2008). It is suited to exploring topics on which
there is limited evidence or where there is no specific theoretical underpinning to
the data collection and analysis (Braun & Clarke, 2006). In addition, given its non-
ideographic focus, thematic analysis is appropriate for analysis of relatively large
 Journal of Reproductive and Infant Psychology 73

sample sizes, as is the case in this study, the aim being to identify patterns across
data items rather than examine the unique features of individual experiences (Braun
& Clarke, 2006).
The analytical process closely followed the guidelines provided by Braun and
Clarke (2006): data familiarisation, generation of initial codes, identification of
themes, revision and refinement of themes, definition and naming of themes, and
report writing. Both authors read the transcripts several times. Author B carried out
the initial coding and identified the sub-themes and themes. Author A also indepen-
dently coded a subsample of the data. Coding across the whole dataset was
reviewed by both authors. The level of agreement between them was high. Where
disagreements occurred, these were resolved through discussion. Participants’ quo-
tations representative of the majority of accounts are presented to illustrate the
themes. Disconfirming cases have also been included.
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Findings
Participant characteristics
Altogether, 430 participants started the survey with 379 (88.1%) completing it in
full and providing comments to at least one open-ended question about the experi-
ence of care. A further 18 participants completed the survey but chose not to com-
ment on the open-ended questions. Thirty-three participants completed less than
half of the questions and thus were removed from the dataset. Of the 379 respon-
dents who completed the survey in full, 361 and 356 answered the ‘helpful’ and
‘unhelpful’ questions respectively, with 344 answering both. This gave a response
rate of 83.9%, 82.8% and 80% respectively. Participants’ characteristics are dis-
played in Table 1. Information on the 33 participants who completed less than half
of the survey questions is too incomplete to enable comparison.
A large proportion of participants lived in London and the South East. Time
elapsed since TOPFAs varied from 1 to 43 years, with most taking place after
2007. The mean gestational age at TOPFA was 18 weeks (range 8–35 weeks). The
great majority of TOPFAs were undertaken within the NHS. Participants who did
not provide qualitative comments (N = 18) had had their termination more recently
(72% from 2010) and were more likely to have had their antenatal care in the
Yorkshire area.
Women’s experience of care when undergoing TOPFA could be articulated
around five themes: being cared for in a timeframe and environment that feels
right; receiving the right level of care; the role of healthcare professionals and sup-
port organisations; and acknowledging women’s particular circumstances and
enabling choices. Each theme was a critical component of good care, with the last
two themes underpinning the successful delivery of each aspect of care as
described in themes one to three.

Being cared for in a timeframe and environment that feels right

As evidence points to the experience of TOPFA being challenging both physically
and emotionally, being cared for in a timely manner and in an environment that
feels right was paramount to women.
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Table 1. Participants’ characteristics.

74

Helpful question (n = 361) Unhelpful question (n = 356) Did not comment (n = 18)
Region of antenatal care
North East 2.8% (n = 10) 3.1% (n = 11)
North West 4.5% (n = 16) 4.6% (n = 16) 11.1% (n = 2)
Yorkshire and the Humber 6.4% (n = 23) 6.8% (n = 24) 22.2% (n = 4)*
West Midlands 4.8% (n = 17) 4.8% (n = 17) 5.6% (n = 1)
East Midlands 7.8% (n = 28) 8.0% (n = 28) 11.1% (n = 2)
East of England 7.6% (n = 27) 7.7% (n = 27)
London 18.8% (n = 67) 19.1% (n = 67) 11.1% (n = 2)
South West 10.4% (n = 37) 10.8% (n = 38) 11.1% (n = 2)
South East 27.4% (n = 98) 26.8% (n = 94) 27.8% (n = 5)
South Central 9.5% (n = 34) 8.3% (n = 29)

Year of termination (average) 2007 2007 2010

From 2007 75% (n = 270) 73.5% (n = 260) 100% (n = 18)*
From 2010 46.7% (n = 168) 45.5% (n = 161) 72.2% (n = 13)*

Method of termination
Medical 81.8% (n = 287) 81.2% (n = 280) 88.9% (n = 16)
Surgical 18.2% (n = 64) 18.8% (n = 65) 5.6% (n = 1)
J. Fisher and C. Lafarge

Gestational age (weeks) 18 18 19

Termination setting
NHS 80.9% (n = 292) 80.8% (n = 287) 88.9% (n = 16)
*Statistical differences significant at .05 level when compared to previous column.
 Journal of Reproductive and Infant Psychology 75

Being cared for in a timely manner

Time was an important element in women’s experience of TOPFA. The issue of
time encompassed balancing the need to gather information and reach a decision
that felt right against the emotional cost of waiting, while also having to consider
the clinical and legal frameworks for TOPFA. In this study, women’s needs and
experiences with regards to time were contrasted. Some participants were satisfied
with the time taken to deal with their situation, while others expressed frustration at
being rushed or delayed.
Positive comments generally focused on the speed of diagnosis and the rela-
tively short wait for the procedure. Thus, ‘seeing a consultant quickly’ (P23), being
‘pushed to the front of the queue for basic procedures like bloods’ (P9) and ‘speed
of going to hospital’ (P79) contributed to mitigating women’s distress. Other partic-
ipants emphasised their satisfaction at having time to reach a decision: ‘going at
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my own speed and not [being] rushed into a decision’ (P154). Once the decision
was made, women valued prompt referral to the hospital: ‘[it was helpful that] the
process was started quickly after the decision was made’ (P342).
Time could also be an issue and some women reported feeling rushed into
deciding whether to continue or terminate the pregnancy. Gestational age, in partic-
ular, seemed to impact on care, with some women reporting increasing pressures
around 13–14 weeks’ gestation, after which surgical terminations are harder to
access in the NHS: ‘Due to the short time window for surgery, the decision felt
pressurised’ (P352, 13 weeks’ gestation). Pressure was also noted around the
24-week legal limit for most abortions:

The policy at the hospital I was at was that it [the termination] couldn’t be carried out
after 24 weeks. There was a possibility that the results from the amniocentesis would
be back very close to this time. When I asked if I could go past the 24 weeks so I
would have more time to think about the decision I was told that it was their policy
not to go past this date. (P377)

Other participants described long delays between the diagnosis and the procedure.
One participant mentioned a six-week delay due to ‘waiting for test results and
appointments to see geneticist’ (P8, 20 weeks’ gestation). Waiting for the procedure
could be distressing, with one participant comparing it to ‘being on death row’
(P298): ‘The wait for the procedure. It was awful to feel my baby moving inside
me knowing that I was going to take their life before it had begun’ (P37). Finally,
for some participants undergoing a medical termination, the 48-hour delay between
taking the first set of medication or having the feticide (in utero injection to cause
fetal demise) and induction of labour could feel ‘like an eternity’ (P307).

Being cared for in the right environment

Being in an environment that felt congruent with their experience also greatly influ-
enced women’s experiences. Most women had vivid memories of the procedure
and thus the way they felt about the setting for the termination, particularly the
ward they were in (gynaecological or labour), was important. The issue of environ-
ment related to the physicality but also the meaning women ascribed to the place
where they underwent the procedure. There was, however, no consensus about
which environment was seen as most suitable. Women simply valued being
 76 J. Fisher and C. Lafarge

admitted to the ward they felt most appropriate to them. A gynaecological ward
was generally favoured by women in the earlier stages of pregnancy or those fear-
ful of being in the close vicinity of mothers and newborns. Other participants, how-
ever, felt that a labour ward was more compatible with their experience: ‘Being in
the delivery unit. I felt I was recognised as a pregnant mum. Rather than being in a
gynae ward’ (P165, 17 weeks’ gestation).
Being admitted to the ‘wrong’ ward could cause distress. Some women on the
labour ward found it difficult to hear other babies being born and ‘leave the hospi-
tal without [their] baby’ (P234). Similarly, being admitted to a gynaecological ward
felt inappropriate for some women who saw it as a failure to acknowledge that
their pregnancy was wanted. This was particularly true of women who had their
termination in the independent sector, although some did not report these concerns.
Participants also commented on the level of privacy they were given. Most had
individual rooms and greatly valued this. Being able to ‘wait separately from other
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people’ (P108), ‘having privacy to spend a few precious hours with [their] baby’
(P234) was appreciated, as was the possibility for their partner to stay with them.
Conversely, unmet needs could cause distress: ‘Halfway through my labour, my
partner and my mother were told to leave – I had to threaten to discharge myself
for them to relent and allow my partner to stay’ (P168).

Receiving the appropriate level of care

Alongside being cared for within a timeframe and environment that felt right,
women valued receiving what they considered to be the right level of care. This
included being cared for by experienced, confident staff, receiving appropriate clini-
cal care, continuity of care and aftercare.

Being cared for by experienced staff

Women valued being cared for by experienced members of staff, ‘specialist mid-
wives’ (P203) or ‘having the most experienced consultant in carrying out selective
feticide’ (P167). Having access to staff with expertise seemed to provide reassur-
ance to women: ‘I felt I was being treated by experts’ (P165). Less positive com-
ments related to hospitals being short-staffed, which could result in long waits and
being cared for by junior or inexperienced members of staff: ‘Normal midwives
seemed not to know what to do. One told me that she had never delivered a still
born baby. This was the last thing I needed to hear’ (P333).

Receiving the right level of clinical care

Having access to analgesia, particularly morphine, was important to women under-
going medical terminations: ‘I was able to have anything to help with the labour
and this was very reassuring’ (P198). Among women who had a medical termina-
tion, negative experiences often related to the degree of pain experienced, either
because the wrong type of analgesia had been provided or because it was insuffi-
cient. The fact that the pain could have been lessened or avoided altogether fur-
thered women’s suffering: ‘I found being in pain throughout labour unnecessary,
and it turned out to be because I was on half-dose of morphine which wasn’t
enough’ (P158). Some women, however, were less positive about analgesia,
 Journal of Reproductive and Infant Psychology 77

describing unpleasant side-effects such as ‘drop in blood pressure’ (P14). Other

negative experiences of clinical care included babies being placed in bedpan or kid-
ney trays after delivery, which some women found upsetting:

It was a very busy maternity ward and the midwives did not spend much time with
me. I ultimately gave birth to my baby on the toilet into a bedpan in the absence of
any midwives with my husband with me, which was a horrific experience for both of
us. (P345)

The importance of continuity of care and aftercare

Continuity of care, particularly ‘by the same midwife’ (P57), was important to
women. In some instances healthcare professionals seemed not to have read
women’s medical notes, and thus were ill informed about their circumstances and
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more likely to make comments that women found upsetting: ‘One nurse didn’t rea-
lise I was a different case and she came into the room all smiles asking why I
looked so sad and where was my chubby baby for her to cuddle’ (P231). Poor con-
tinuity of care or miscommunication between staff led to some women being
referred to antenatal care or contacted by children’s services after their termination.
Aftercare was another important element in women’s experience. However,
most participants reported not receiving any, which one equated to ‘feeling aban-
doned’ (P234). Many women had to take matters in their own hands: ‘I also had to
cancel all my other antenatal appointments as my midwife had failed to close the
loops’ (P294). Some had to arrange their follow-up appointment themselves: ‘I was
supposed to have a follow-up consultant appointment, I was never told this and
eventually when I found this out I had to contact the hospital for it’ (P291). In
some cases, community healthcare professionals failed to visit women after the pro-
cedure:

We were told we would have a visit by a midwife, she rang two days later but never
turned up for a week. By which time I was in a terrible pain and we found out that I
had an infection!! (P45)

When aftercare was available, women found it beneficial: ‘The care was v [very]
good. [The] bereavement midwife [was] excellent and I saw her lots after’ (P102).

The role of healthcare professionals and support organisations

Women’s experience of TOPFA was greatly influenced by their interactions with
healthcare professionals, whom they consider as having two main roles: informing
them and supporting them in an empathetic way. They also spoke positively of
being signposted to information and support from external support organisations.

Informing women
Information was an important factor in women’s experience of care. It was central
to the decision to terminate the pregnancy and the experience as a whole. Given
that this article concentrates on the experience of care when undergoing TOPFA,
this section focuses on the information provided to women before and at the time
of the procedure and not on information related to the fetal anomaly. Information
 78 J. Fisher and C. Lafarge

about the procedure was generally given by healthcare professionals. Women val-
ued this information because it enabled them to prepare for the physical side of
what was to come: ‘The information given to me by the midwife and nurse was
very good, [they told] me all what I should expect to happen’ (P317). Being given
explanations about the procedure as ‘they went along’ (P147) was also critical, par-
ticularly because a medical procedure could be lengthy. Women also welcomed the
opportunity to ask questions: ‘Also I was given a lot of time to ask questions
before the termination with the genetic counsellor, midwife and doctors’ (P194).
By contrast, a lack of information could cause anguish. Many participants
undergoing medical terminations had not expected the procedure to last for as long
as it did: ‘Nobody told me how long I might be in the labour ward for (I was told
6–12 hours and I was there for three days which I later found out was quite com-
mon)’ (P333). This was particularly pertinent to those who had not given birth
before and among whom ‘a fear of the unknown’ (P165) was reported. In addition,
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some women felt uninformed about ‘how [they] might feel psychologically after-
wards’ (P92), possible medical complications or lactation: ‘with the additional
trauma that brought in not having to feed a baby’ (P234). Lack of information
about what would happen to the baby’s remains could also cause distress: ‘After I
was discharged I was supposed to be told when the baby would be cremated or if I
wanted a funeral and I never was’ (P291). Some participants were also angered by
inconsistent and ‘conflicting information’ (P38). Finally, timing of information pro-
vision could be experienced by some women as inappropriate, particularly when
relating to the post mortem:

The doctor brought in the post mortem consent when I was in the middle of labour
and expected me to listen and make decisions about what I wanted to find out after
the birth (…) the time she chose to do it didn’t really work for me. (P334)

Providing empathetic care

Possibly the most influential element in women’s experience was healthcare
professionals’ ability to care for them in an empathetic way. Again, women’s
accounts on this varied. Women were forthcoming in commending professionals
who dealt with them with empathy, describing the care received as, for example,
attentive, caring, compassionate, considerate, friendly, humane, kind, sensitive,
understanding, warm: ‘All the staff were wonderful from the moment we were given
the news that our 12-week scan had shown a problem – caring, supportive, kind,
professional – it helped enormously’ (P23). Empathetic care meant different things
to women. Some found healthcare professionals’ closeness, e.g. ‘having someone
with [them] throughout labour’ (P184), comforting. Others found solace in
healthcare professionals appearing to validate their decision: ‘Medical staff were very
supportive and caring and reassured me that I made the right decision, which helped’
(P284). Generally, however, it was healthcare professionals’ kindness that women
were most grateful for. Kindness could be displayed towards the woman, her partner
but also her baby: ‘The care and attention the midwife on duty showed to our son,
i.e. talking to him as she washed and dressed him’ (P172). Other participants were
grateful for staff’s discretion: ‘Nursing staff were caring and understanding, but not
fussing, [they] gave us plenty of space – respectful in fact’ (P256).
 Journal of Reproductive and Infant Psychology 79

Care was, however, not always provided in an empathetic way. Some women
described the care they received as appalling, blunt, cold, dismissive, impersonal,
judgemental, uncaring or unfriendly. A lack of understanding about women’s cir-
cumstances was often mentioned as a source of distress. Healthcare professionals
could appear dismissive of the physical and emotional pain women endured.

The role of support organisations

Alongside healthcare professionals, women also saw support organisations such as
ARC or the Stillbirth and Neonatal Death Charity (SANDS) as pivotal in providing
them with information and emotional support. Many women considered it to be
healthcare professionals’ duty to signpost them to these organisations, and this did
not happen consistently. Among women signposted to support organisations, many
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stated that they would have liked to have been referred to them earlier in the pro-
cess: ‘The midwife was very kind though we didn’t find out about ARC until after
our daughter was born’ (P158).
Women generally rated the information they received from support organisations
very highly and, for some, it was their only source of information: ‘The ARC booklet
I was given at the initial diagnosis straight after the scan, without it I would have
been completely unaware of what to expect from the birth’ (P310). Women also
sourced emotional support from these organisations, which one participant described
as ‘a lifeline’ (P106). These were particularly helpful in alleviating women’s sense of
isolation: ‘The leaflets given to me helped knowing that it wasn’t just me’ (P280).
No negative outcomes of accessing support organisations were mentioned.

Acknowledging women’s particular circumstances

Underpinning women’s experience of care was their desire for their particular cir-
cumstances to be acknowledged. This involved healthcare professionals acknowl-
edging the unique nature of TOPFA and the psychological challenges that may be
associated with it.

Acknowledging the unique nature of TOPFA

Participants were keen for healthcare professionals to recognise that their pregnancy
was very much wanted: ‘There was a real awareness that this was a desperately
wanted pregnancy’ (P259). Women also wanted the uniqueness of their situation to
be acknowledged in the context of terminations for non-medical reasons:

I fully support women’s choice to have terminations, but at the time, it was hard to
be in the same room as many young girls, when I did not want to be there at all. I
did not have a choice as the diagnosis meant my baby would die anyway. (P87)

This was particularly important to those who had their termination in the indepen-
dent sector, where most terminations for non-medical reasons are carried out. Some
women reported being offered contraceptives after the procedure, which they found
upsetting.
Other women were keen for their experience to be differentiated from a
miscarriage: ‘[Unhelpful] Being handed a leaflet about dealing with a miscarriage
 80 J. Fisher and C. Lafarge

almost immediately afterwards when I was clearly dealing with an awful decision
which was NOT a miscarriage’ (P134).
Many women were sensitive to the terms used by healthcare professionals to
refer to their baby or their experience. Referring to the baby as ‘product of concep-
tion’ (P333) was experienced as particularly hurtful as it seemed to invalidate the
baby: ‘I was made to feel like my baby wasn’t a baby’ (P133). This was, however,
contrasted by one participant who was keen to distance herself from the concept of
baby: ‘The midwife was a natural birth midwife and kept referring to the fetus as a
baby which I found upsetting’ (P44).

Acknowledging the psychological challenges associated with TOPFA

Women mentioned a number of psychological challenges associated with undergo-
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ing TOPFA, the most prominent one being a fear of being judged. Some women
reported being worried they would be judged for their decision to terminate and,
thus, were grateful when healthcare professionals cared for them in what they per-
ceived to be a non-judgemental way: ‘At every point I was well cared for, able to
be open and never once felt judged’ (P129). The value placed on non-judgemental
attitudes extended to other professionals such as faith leaders, with some partici-
pants finding comfort in being supported by a ‘hospital chaplain’ (P26).
Attitudes seen as judgemental were, however, also recounted: ‘I found the treat-
ment of the midwife unhelpful as she was very offhand and I felt she didn’t
approve of my decision to end the pregnancy’ (P312). In some cases, healthcare
professionals not only appeared to be judgemental towards women’s decisions but
also the way women behaved during the termination : ‘One rude and pushy mid-
wife who wanted me to hold the dead baby/fetus which I was too distressed to do
– saying that ALL MOTHERS DO – I felt she made me feel unworthy for my
decision’ (P143).
Finally, a few women reported experiencing feelings of guilt: ‘I had to wait a
while for a hospital bed, it was about a week which made me anxious and feel pro-
gressively guilty’ (P47). Feelings of guilt could also relate to not being prepared
for what would happen to the baby after the termination: ‘On [the] day they talked
about whether we wanted a funeral, to put anything in with the baby, e.g. cuddly
toy, [I] felt inadequate and even more guilty as [I] hadn’t thought of any of that!’
(P79). These accounts, however, represent a minority.

Enabling women to make choices

Acknowledging women’s particular circumstances, and in particular the unique nat-
ure of TOPFA, also involved enabling women to make choices about their care
should they wish to do so.

The importance of choice

In this study, most women greatly valued being given choices, including whether
to have the termination or not, the method of termination, the types and levels of
analgesia, whether to spend time with the baby or not, and what to do with the
baby’s remains. For many women, these choices appear to give them a level of
control over a situation most felt they had no control over: ‘I did not have a choice
 Journal of Reproductive and Infant Psychology 81

as the diagnosis meant my baby would die anyway, be it at full term, immediately
after birth, or somewhere along the pregnancy’ (P87), or again: ‘My termination
was extremely late and we had no choice’ (P91). Some women clearly stated that
they were grateful for having ‘had the choice to terminate’ (P136) in the first place.
The choice over the ‘antenatal ward or the gynaecological ward’ (P335), the type
of analgesia and whether/how ‘to spend time with the baby after birth’ (P234)
could be seen by some women as a way to empower themselves. Women who had
limited choices reported more negative experiences.
While choice was mainly reported as positive, some women also described
being somewhat overwhelmed by the choices they had to make: ‘On the day, I
found the choices of medication method, e.g. self-administered pain relief at regular
intervals via cannula or injection, a bit confusing’ (P244) or ‘[it was unhelpful] not
realising how many choices we’d have to make in terms of post mortem and fun-
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eral arrangements’ (P270). However, this feeling was often more related to the lack
of preparation and anticipation than the choice itself.

Choice of method of termination

A choice over the method of termination was greatly valued, but, in this study, only
50 women out of 361 (14%) were offered a choice of method. Among those who
had the choice, the majority (N = 30; 60%) chose to have a surgical termination:
‘The consultant really listened and went out of her way to give me the procedure I
wanted’ (P327, surgical termination, year of termination 2009). Being able to make
that choice was particularly important to participants fearful of giving birth to a
dead baby and/or who had never given birth before.
The lack of choice over the termination method could be a major issue, with
some women unable to access surgical termination despite it being their preferred
method:

I was absolutely against delivering my baby as I felt I wasn’t strong enough to go

through labour, but I wasn’t offered any alternative. (…) I was so concerned and
afraid, it was almost a factor in me not going ahead with the termination. (P65, 2011)

In some cases, surgical terminations were actively ‘undermined as an option’

(P179, 14 weeks’ gestation, 2011): ‘I never considered there was an alternative to
an induced labour as I was told that if I had a surgical removal it could possibly
mean I could not have future pregnancies’ (P206, 13 weeks’ gestation, 2008).
Other women were unaware until they responded to the survey that they ‘could
have had a choice of method’ (P23, 2012).

Discussion
In this article, we set out to examine women’s experience of care when undergoing
TOPFA. The study’s findings show that the organisation of care and healthcare pro-
fessionals’ support were paramount in women’s experience of TOPFA and that
women valued individualised care that answered their particular needs. More pre-
cisely, for women, good care encompassed: being cared for in a timeframe and
environment that feels right; receiving the right level of care; receiving information
and empathetic support from healthcare professionals and support organisations;
 82 J. Fisher and C. Lafarge

having their particular circumstances and the psychological challenges associated

with it acknowledged; and being able to make choices. These findings have several
practical implications.

Timing and environment

Many women were satisfied that their care was managed in a timely fashion, but
others described feeling pressured. Time pressures due to diagnoses made after the
mid-pregnancy anomaly scan (scheduled at around 20 weeks’ gestation) may be
unavoidable if clinicians believe the fetal indication does not fulfil the criteria for
Ground E of the abortion law. In this instance, the termination can only be sanc-
tioned under an alternative ground before 24 gestational weeks. Some parents
approaching this ‘deadline’ will have the additional stress of having to make their
decision within a tight timeframe. It is therefore important to provide extra psycho-
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logical support to parents in this circumstance as they may feel particularly vulnera-
ble. Referral to staff trained in providing psychological support or support
organisations may address this. Another reported time pressure concerned access to
surgical termination. Few NHS hospitals have the in-house surgical expertise to
provide surgical terminations after 13 weeks’ gestation (Lyus, Robson, Parsons,
Fisher, & Cameron, 2013). In our study, some of the women given a diagnosis of
fetal anomaly following first trimester screening with a preference for this proce-
dure felt they had to make decisions quickly. Therefore, it may be helpful for
healthcare professionals to inform women that surgical termination procedures after
13 weeks are available in the independent sector under NHS contract. Even though
in some parts of the country women will have to travel some distance to an inde-
pendent provider, some may be willing to do this.
With regards to environment, there was no consistency in women’s preference
but women valued being able to decide on the ward that felt right for them. There-
fore, it is important that, where possible, healthcare professionals accommodate
women’s preferences.

Competent, confident staff

Women were positive about being cared for by skilled, ‘experienced’ staff who
were responsive to their needs and could provide continuity of care, including after-
care. Discrepancies in care in this area may partly be due to sub-optimal staffing
levels (Royal College of Midwives, 2013). While there may be no ‘quick fix’ to
the strain on NHS resources, implementing a co-ordinated care pathway for women
facing TOPFA and ensuring all staff involved receive adequate training could be
beneficial. An example of this would be the training run by ARC that is accredited
by the Royal College of Midwives which covers all aspects of providing individua-
lised care for women and couples facing TOPFA, including the practical and ethical
issues facing staff.

Providing empathetic care

Healthcare professionals’ ability to provide empathetic care was also a key component
of women’s experience, a finding previously noted in the literature (Asplin et al.,
2013; Korenromp, Page-Christiaens, van den Bout, Mulder, & Visser, 2007). Women
spoke positively of empathy and kindness from healthcare professionals and,
 Journal of Reproductive and Infant Psychology 83

conversely, were critical of behaviours they perceived as insensitive. Women also

spoke of the psychological challenges associated with TOPFA (e.g. fear of judge-
ment), which made the provision of empathetic care all the more crucial. This finding
is particularly relevant given the current impetus within the NHS, following the
Francis report (the Francis report of the Mid Staffordshire NHS Foundation Trust
Public Inquiry, 2013), to develop a new model of care based on compassion and
respect. Furthermore, as there is no evidence to suggest that there is a ‘typical’
response to TOPFA (Sloan, Kirsh, & Mowbray, 2008), healthcare professionals
should take the lead from parents in how they wish to approach this experience,
including whether they refer to a ‘fetus’ or ‘baby’ and how they might want to
acknowledge the loss.
Providing empathetic care to parents in this context can be demanding on a per-
sonal level for healthcare professionals (Garel, Etienne, Blondel, & Dommergues,
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2007; Hunt, France, Ziebland, Field, & Wyke, 2009; Menezes, Hodgson, Sahhar, &
Metcalfe, 2013). The extreme level of distress experienced by parents facing TOPFA
can mean some are unappreciative of their care, however well managed. Access to
support organisations such as ARC can complement the care provided by hospital
staff by offering an independent space for parents to offload emotions. Staff are also
likely to benefit from having formalised support for themselves in place. This could
be addressed through supervision at work or support organisations. For example,
ARC’s confidential helpline is also used by healthcare professionals.

Providing information and enabling choice

Women appreciated clear, accurate and consistent information provided at appropri-
ate times. They needed to know what would happen before, during and after the
procedure to help them prepare for what was ahead and the options they had. The
findings suggest that women are not always offered adequate information. Discrep-
ancies between women’s information needs and the information provided have
already been documented (Hunt et al., 2009). Providing information may be chal-
lenging for healthcare professionals as women facing TOPFA might find it hard to
assimilate information (Hunt et al., 2009). Therefore, women may benefit from hav-
ing a named professional, most likely a midwife or genetic counsellor, who they
can contact with questions or concerns. They could also be signposted to support
organisations for more detailed information (e.g. ARC’s parent ‘handbook’ [2012];
SANDS’ healthcare professionals’ guidelines on discussing post mortem [2013]).
Women also valued being able to make choices and having a degree of control
over their care. In relation to choice, being enabled to have the termination method
they wanted was important to women. This supports existing literature indicating
that women prefer the surgical method of termination after 13 weeks’ gestation and
that it is important to offer them a choice of method (Kelly et al., 2010). Despite
the existence of RCOG guidelines, improving care in this area is challenging.
Unless a full post mortem is required, there is usually no clinical reason to restrict
the choice of method (RCOG, 2010). The main obstacle is the dearth of doctors
working in NHS hospitals trained in dilatation and evacuation procedures (Lyus
et al., 2013), which is partly due to abortion provision shifting into the independent
sector (Department of Health, 2013). As independent providers are licensed to pro-
vide abortions until 24 weeks’ gestation, women should be made aware that these
services exist and can most often be NHS funded. However, they may also need to
 84 J. Fisher and C. Lafarge

be prepared for an abortion clinic setting where other women are ending unwanted
pregnancies. This is particularly important given that many women in our study
were keen to have the uniqueness of their experience acknowledged, which could
involve differentiating themselves from women having terminations for non-medical
reasons. As a result, staff working in the independent sector might also benefit from
more insight into the needs of this client group.

Strengths and limitations of the study

This study adds to the limited literature about women’s experience of care when
undergoing TOPFA. It involved a large group of women who had undergone TOP-
FA with a range of experiences, TOPFA for different indications, using different
methods and over a range of gestations. However, the study has some limitations.
The data were collected through retrospective self-reports, therefore recall bias and
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post hoc rationalisation cannot be excluded. Given that there was no limit to the
time elapsed since termination, it is possible that recall may have been difficult for
those whose termination had occurred some time ago. The online methodology
meant there was no opportunity for probing. The sample came exclusively through
ARC, which means all the participants had actively sought additional emotional
support. Therefore, the results may not be transferrable to women who do not
approach support organisations. There was a geographical bias, which, while it
reflects ARC’s membership, may impact on the findings. Finally, as the survey
focused on the choice of termination method, it is likely that participants were, to
some extent, primed in discussing issues around choices. However, given that the
study was initially undertaken in response to women’s accounts on this topic, we
can assume that the choice of method is a legitimate issue for women. Further qual-
itative research, particularly with women who have not been in contact with sup-
port organisations, would increase our understanding of women’s experience and
aid healthcare professionals in delivering individualised care.

Conclusion
This qualitative study highlights a number of elements women ranked highly in
their experience of care when undergoing TOPFA. Some, such as timing and clini-
cal environment, can sometimes be outside the control of healthcare professionals
due to the law and pressures on ward space. However, having a named professional
providing continuity of care for women through the process would mean any dis-
tress when expectations cannot be met could be acknowledged and extra support
provided when necessary. Other aspects women deemed important, such as clinical
expertise, empathetic care, continuity and aftercare, information provision, acknowl-
edgement of their particular circumstances and having choices, are areas where
healthcare professionals can have agency in addressing individual needs. To do so
consistently will necessitate co-ordinated planning of care and appropriate staff
training within both the NHS and the independent sector. This study has also iden-
tified the need for further research, particularly with women who have not been in
contact with support organisations, which would increase our understanding of
women’s experience. Research evidence will help to establish models of best prac-
tice to inform the implementation of auditable care pathways, protocols and staff
training. As developments in prenatal testing lead to more women confronting the
prospect of TOPFA, it is important that caregivers are able to meet their needs.
 Journal of Reproductive and Infant Psychology 85

Acknowledgements
We are very grateful to all the women who responded to the survey and were prepared to
revisit such a difficult experience. We also acknowledge the invaluable input of the expert
advisory group. Finally we thank Dr Pauline Fox for her helpful comments on the
manuscript.

Funding
This work was supported by the Department of Health (England) under the voluntary sector
grant [grant number 2011/022].

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