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Maternal Anxiety Related to Prenatal
Diagnoses of Fetal Anomalies That
Require Surgery
Q9Abigail B. Wilpers, Holly Powell Kennedy, Diane Wall, Marjorie Funk, and Mert Ozan Bahtiyar
ABSTRACT
Objectives: To investigate maternal anxiety in women with pregnancies complicated by fetal anomalies that require
surgery.
Design: Prospective comparison pilot study.
Setting: A fetal care center in a Northeastern U.S. academic medical center.
Participants: Women in their second or early third trimesters of pregnancy; 19 with pregnancies complicated by fetal
anomalies and 25 without.
Methods: After ultrasonography, all participants completed the Spielberger State–Trait Anxiety Inventory and a
sociodemographic questionnaire. Participants with pregnancies complicated by fetal anomalies also answered
questions about the causes of their anxiety, their awareness of the nurse care coordinator service, and desired
methods of emotional support. Obstetric and mental health history data were abstracted from the medical records of
both groups.
Results: Participants with pregnancies complicated by fetal anomalies had greater mean state anxiety scores than
those without (43.58 vs. 29.08, p ¼ .002). Maternal age was positively correlated with the state anxiety in women with
fetuses with anomalies (r ¼ 0.59, p ¼ .008). Participants with histories of mental health issues had greater mean trait
anxiety scores than those without (39.2 vs. 32.2, p ¼ .048). Most participants (68%) reported that knowledge of the
fetal care center’s nurse care coordinator decreased their anxiety. Participants wanted the opportunity to speak with
families who had similar experiences as a source of emotional support.
Conclusion: Older maternal age may be a risk factor for anxiety in this population. Knowledge of the fetal care center
nurse care coordinator service may have a positive effect and should be studied further.
JOGNN, -, -–-; 2017. http://dx.doi.org/10.1016/j.jogn.2017.02.001
Accepted February 2017
An increasing number of fetal anomalies is
being detected and managed during preg-
nancy, in part because of advancements in
ultrasonography and prenatal screening. Some of
the most prevalent diagnoses are nonlethal fetal
anomalies that can be corrected or treated
surgically after birth (Parker et al., 2010). These
newborns often undergo surgery within the first
few days of life. The diagnosis and management
processes for surgically treatable fetal anomalies
are associated with significant maternal anxiety
(Aite et al., 2006; Leithner et al., 2004; Rosenberg
et al., 2010; Skari et al., 2006). However, women
whose pregnancies are complicated by these
fetal anomalies are often excluded from studies
on the emotional effects of prenatal diagnoses,
usually because of their more favorable
prognoses compared with lethal and chromo-
somal conditions. The risk for this population
cannot be overlooked, because negative out-
comes are associated with maternal anxiety in
pregnancy. These outcomes can be severe,
including preterm birth, newborns who are small
for gestational age, and childhood neuro-
developmental delays (Blair, Glynn, Sandman, &
Davis, 2011; Kramer et al., 2009). Furthermore,
evidence suggests that pregnancy-related anxi-
ety is more strongly associated with preterm birth
and adverse child outcomes than general anxiety
and depression (Lobel et al., 2008).
Multidisciplinary prenatal care through a fetal
care center is the recommended standard prac-
tice for women whose pregnancies are
The authors report no con-
flict of interest or relevant
financial relationships.
Correspondence
Abigail B. Wilpers, MSN,
WHNP-BC, Yale School of
Nursing, Yale West
Campus, P.O. Box 27399,
West Haven, CT 06516-
7399.
abigail.wilpers@yale.edu
Keywords
fetal care center
fetal diagnosis
fetal therapy
fetal treatment center
high-risk pregnancy
maternal anxiety
maternal experience
nurse care coordinator
surgical fetal anomaly
Abigail B. Wilpers, MSN,
WHNP-BC, is a doctoral
student in the Yale School of
Nursing, West Haven, CT.
Holly Powell Kennedy,
PhD, CNM, FACNM,
FAAN, is the Executive
Deputy Dean and Helen
Varney Professor of
Midwifery, Yale School of
Nursing, West Haven, CT.
(Continued)
ª 2017 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses.
Published by Elsevier Inc. All rights reserved.
http://jognn.org 1
R E S E A R C H
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complicated by fetal anomalies (American
College of Obstetricians and Gynecologists
Committee on Ethics & American Academy of
Pediatrics Committee on Bioethics, 2011). Coor-
dinated multidisciplinary care and consultations
by maternal–fetal medicine specialists, neo-
natologists, and pediatric medical and surgical
subspecialists have been shown to decrease
maternal anxiety associated with the diagnosis of
a fetal anomaly that requires surgery (Aite et al.,
2002; Kemp, Davenport, & Pernet, 1998). In
some centers, further steps to decrease maternal
anxiety have been taken by integrating mental
health professionals and emotional support
services into the prenatal care team (e.g., psy-
chologists, religious services, social workers,
palliative care and/or child life specialists). The
use of these interventions has shown to signifi-
cantly decrease maternal anxiety, and they are
widely recommended (Aite et al., 2002; Gorayeb,
Gorayeb, Berezowski, & Duarte, 2013; Kemp
et al., 1998; Langer & Ringler, 1989; Statham,
Solomou, & Chitty, 2000).
Although nurses provide care for women during
pregnancy and the postnatal period, their role in
the provision of psychological support to women
and families in fetal care centers has not been
well studied. At the center of the treatment team is
the care coordinator, usually a nurse with an
obstetric or pediatric background. This role has
been described as “the linchpin” (Besuner &
Imhoff, 2007), “the glue” (Moise, 2014), and “theQ1
fulcrum” (Chock, Davis, & Hintz, 2015) in the care
of women during fetal diagnosis and treatment.
A key aspect of the coordinator’s role involves
psychosocial support, and this individual often
serves as the primary contact for women and
their families during the prenatal period. The
nurse coordinator must assess emotional well-
being and advocate for a woman’s necessary
support (Besuner & Imhoff, 2007; Moise, Kugler,
& Jones, 2012). The limited resources of many
health care systems may preclude mental health
services for all women enrolled at fetal care
centers. In many cases, the nurse coordinator
may be the primary emotional support for women.
In these instances, it is important to assess
which women are at increased riskQ2 so that
resource-intensive interventions can be targeted.
Establishing risk factors can help members of fetal
care center teams identify women in need of
additional psychosocial support. Staff at the cen-
ters can develop patient-directed care by
assessing which support methods women would
be most likely to use to decrease their anxiety.
Knowledge of risk factors for anxiety could
contribute to targeting those in need of interven-
tion, whereas factors associated with lower anxiety
and feedback from participants could be used to
inform development of future interventions.
The objective of this pilot study was to investigate
maternal anxiety in pregnancies complicated by
fetal anomalies that require future surgery. This
was done through (a) comparison of anxiety
levels in women with and without pregnancies
complicated by fetal anomalies that require
surgery, (b) examination of the relationships
among maternal anxiety and sociodemographic
and clinical characteristics, (c) investigation of
how information about the nurse care coordinator
affected maternal anxiety, and (d) description of
the women’s interest in potential methods of
emotional support.
Methods
Design and Sample
We conducted a prospective comparison pilot
study at a fetal care center in a Northeastern U.S.
academic medical center. The University’s Q3insti-
tutional review board approved the study. Women
were recruited through clinician referral in the
fetal care center. Two groups of women who
presented at the center for second trimester
ultrasonography were eligible for the study. The
first group included women with pregnancies
complicated by a nonlethal, major structural fetal
malformation that would require corrective
surgery within the child’s first year of life. These
women were not approached at the time of
diagnosis but at a follow-up visit to the center
once the decision had been made to continue the
pregnancy and transfer their care to the center.
Women whose fetuses had primary brain anom-
alies were excluded because of the greater like-
lihood of a residual impairment and poorer
prognosis than most anomalies that require
surgery. The second group included women who
presented for routine ultrasonographic screening
who had no fetal or obstetric complications.
These women served as a control group and
were approached after physician confirmation of
normal ultrasonography results. Eligibility was
limited to women who spoke English and were
older than 18 years of age.
Diane Wall, MSN, RN,
CNE, is Program
Coordinator of the Fetal
Care Center, Yale New
Haven Hospital, New
Haven, CT.
Marjorie Funk, PhD, RN,
FAHA, FAAN, is the Helen
Porter Jayne and Martha
Prosser Jayne Professor of
Nursing, Yale School of
Nursing, West Haven, CT.
Mert Ozan Bahtiyar, MD, is
an associate professor of
Obstetrics, Gynecology, and
Reproductive Sciences, Yale
School of Medicine and the
Director of the Fetal Care
Center, Yale New Haven
Hospital, New Haven, CT.
Evidence suggests that pregnancy-related anxiety is more
strongly associated with preterm birth and adverse child
outcomes than general anxiety and depression.
Maternal Anxiety and Fetal Anomalies Requiring SurgeryR E S E A R C H
2 JOGNN, -, -–-; 2017. http://dx.doi.org/10.1016/j.jogn.2017.02.001 http://jognn.org
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Fetal anomalies that require surgical correction
are usually detected after a routine anatomic
ultrasonographic examination around 18 to
20 weeks gestation. All participants were enrolled
during the second trimester, with the exception of
one participant who had completed the first week
of her third trimester. The second trimester is the
period in pregnancy least likely to be associated
with anxiety (Rofe, Blittner, & Lewin, 1993). Thus,
for women whose pregnancies are complicated
by fetal anomalies, anxiety at this time may be
more likely related to the anomaly diagnosis
versus the common pregnancy anxieties seen in
the first and third trimesters.
Measures
Anxiety levels were measured using the Spiel-
berger State–Trait Anxiety Inventory (STAI), a
self-rating instrument for the assessment of the
current (state) and intrinsic (trait) level of anxiety.
The construct validity of the scale is shown
through substantial evidence. Researchers sug-
gested that the STAI is the best instrument to
measure prenatal anxiety symptomatology, with
high validity and reliability in pregnant pop-
ulations (Nast, Bolter, Meinlschmidt, &
Hellhammer, 2013; Spielberger and Gorsuch,
1983). STAI scores of state and trait anxiety
range from 20 to 80, with greater scores indi-
cating greater levels of anxiety. Women who
score greater than 40 on the STAI have been
considered highly anxious (Bayrampour,
McDonald, & Tough, 2015; Evans, Myers, &
Monk, 2008; Giardinelli et al., 2012; Grant,
McMahon, & Austin, 2008).
Participants whose pregnancies were compli-
cated by fetal anomalies were also assessed for
pregnancy-related anxiety. There is a lack of
standardization among instruments to measure
pregnancy-related anxiety. Thus, we asked
participants directly, If you feel that you are expe-
riencing anxiety at this time in your life, please list
the three things that you feel contribute most to
your anxiety. We used the dimensions of preg-
nancy anxiety described by Bayrampour and
colleagues (2016) to guide a content analysis of
the written responses. Sociodemographic data
were collected from both groups. A data collection
tool was used to abstract relevant clinical infor-
mation on obstetric and mental health history from
the medical records of both groups. Clinical infor-
mation was used to categorize the fetal diagnoses
as major or minor based on the criteria established
by Titapant and Chuenwattana (2015), in which
major diagnoses had a greater risk of a lasting
impairment, and minor diagnoses were less se-
vere, with little to no functional significance.
Participants whose fetuses had anomalies were
also asked about their knowledge of the fetal care
center’s nurse care coordinator and how their
anxiety was affected by receipt of this informa-
tion. The goal of the center is to inform women of
this service at the time of diagnosis and if a
transfer of care is likely. Participants were first
asked if they had been informed that there was a
nurse who would be coordinating their care
throughout the pregnancy. This was followed up
with the question, Did information about the nurse
care coordinator make you feel less anxious? For
both questions participants could select yes, no,
or not sure.
Finally, participants were presented with a list of
emotional support services and asked to select
those services they would be interested in if they
were offered by the center. The list included a
support group at the fetal care center, the
opportunity to speak with families who have had a
similar experience, and mental health resources
(at the care center or a referral to someone
outside the care center). Data were collected at
the center by the first author (A.B.W.), and no
further participation was required. All data were
de-identified.
Associations
Independent t tests and chi-square tests were
used to determine if the groups of participants
with and without pregnancies complicated by
fetal anomalies were equal in their sociodemo-
graphic and clinical characteristics. A two-tailed
independent t test was used to compare anxiety
state and trait levels between the groups with and
without pregnancies complicated by fetal anom-
alies that require surgery. Chi-square tests were
used to compare the proportion of participants
with high anxiety (state score >40) in each group.
To analyze pregnancy-related anxiety, the first
two authors (A.B.W. and H.P.K.) independently
conducted a content analysis of all 41 answers
and achieved 98% consensus. Two-tailed inde-
pendent t test, one-way analysis of variance, and
Pearson’s correlation were used to investigate the
association of sociodemographic and clinical
factors with maternal state and trait anxiety for all
participants. To assess the influence of aware-
ness of the nurse care coordinator, a two-tailed
independent t test was used to compare anxiety
scores of the participants who reported
Wilpers, A. B., Kennedy, H. P., Wall, D., Funk, M., and Bahtiyar, M. O. R E S E A R C H
JOGNN 2017; Vol. -, Issue - 3
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FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
decreased anxiety due to knowledge of the care
coordinator with those who reported that infor-
mation about the care coordinator did not influ-
ence their anxiety. Interest in potential emotional
support services was evaluated by total number
of selections for each choice. All statistical ana-
lyses were conducted using StatPlus (AnalystSoft
Inc., Walnut, CA).
Results
Participants were recruited between August 2015
and February 2016. Of the 48 women who were
approached, 44 consented and completed the
questionnaires, 19 with fetuses with anomalies
and 25 without. Four women without fetal anom-
alies declined to participate because of time
constraints. All women with fetuses with anoma-
lies who were approached agreed to participate.
This was a small pilot study; therefore, no a priori
power analysis was done. Participants with and
without pregnancies complicated by fetal anom-
alies were comparable on all sociodemographic
and clinical characteristics (see Table 1). The
variety of fetal diagnoses and the distribution
across severity groups are shown in Table 2.
ScoresQ4 are reported as mean Æ standard
deviation.
Participants with pregnancies complicated by fetal
anomalies had a greater mean state anxiety score
than those without (43Q5 .58 vs. 29.08, p ¼ .002; see
Table 3). The mean trait anxiety scores did not
differ between the two groups: 33.74 Æ 8.09 for
participants with fetuses with anomalies versus
34.84 Æ 9.72 for those without fetal or obstetric
complications (p ¼ .68). Ten of the 19 participants
(53%) whose fetuses had anomalies had state
anxiety scores greater than the established cutoff
of 40, which suggested greater anxiety. Only 3 of
the 25 participants (12%) without current obstetric
or fetal complications had state anxiety scores
greater than 40 (p ¼ .003).
Older maternal age was positively associated with
greater state anxiety scores (r ¼ 0.59, p ¼ .008;
see Figure 1) This relationship was not seen in the
control group. There was no relationship between
age and trait anxiety in either group. No other
sociodemographic or clinical characteristics
investigated were significantly associated with
state anxiety. However, falling just short of signifi-
cance (p ¼ .052), participants with pregnancies
complicated by fetal anomalies who also had prior
pregnancy complications (n ¼ 5) trended toward
greater mean state scores than those in the
fetal anomaly group who did not have prior preg-
nancy complications (n ¼ 14, 53.8 Æ 16.3 vs.
37.5 Æ 14.9). Another trend that did not reach
significance showed that participants with severe
diagnoses had greater state anxiety scores
than those with minor diagnoses (48.5 Æ 17.5 vs.
38.1 Æ 15.6, p ¼ 0.19; see Table 3).
Only one association was found between trait
anxiety and sociodemographic or clinical char-
acteristics in either group. Participants whose
pregnancies were complicated by fetal anoma-
lies and had histories of mental health diagnoses
had greater mean trait anxiety scores than the
control group (39.2 Æ 4.2 vs. 32.2 Æ 8.6, p ¼ .048;
see Table 3).
When assessing pregnancy-related anxiety in
participants whose pregnancies were complicated
by fetal anomalies, three women declined and
stated that they did not feel any anxiety. All three of
these participants had diagnoses categorized as
minor. One participant declined without stating a
reason. Of the 41 responses, 39 were pregnancy-
related, and of these, 32 were specifically related
to the fetal complication. Descriptors included
worried about my baby needing surgery, finances
to support baby with special needs, and anxious
about my baby’s prognosis: quality of life. Thus,
high state anxiety was determined to be
pregnancy-related anxiety and, more specifically,
related to the fetal anomaly.
Most participants (84%) were aware of the fetal
care center nurse care coordinator and her role.
Most (68%) reported that being informed of the
nurse care coordinator had decreased their
anxiety. Participants who reported feeling that the
information about the nurse care coordinator
decreased their anxiety had a lower mean state
anxiety score than those who denied or were
unsure that this information decreased their
anxiety (39.61 Æ 16.32 vs. 52.15 Æ 16.67), but
this difference was not statistically significant
(p ¼ .16). Finally, when asked about what
potential emotional support services they would
be interested in if offered by the fetal care center,
10 participants (53%) expressed interest in a
support group, and 15 participants (79%) were
interested in speaking with a family who had a
similar experience to theirs. Only one participant
Older maternal age was positively associated with greater
state anxiety scores.
Maternal Anxiety and Fetal Anomalies Requiring SurgeryR E S E A R C H
4 JOGNN, -, -–-; 2017. http://dx.doi.org/10.1016/j.jogn.2017.02.001 http://jognn.org
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FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
(5%) expressed an interest in mental health re-
sources (within the fetal care center and/or an
outside referral).
Discussion
In this pilot study, we sought to better understand
maternal anxiety in pregnancies complicated by
fetal anomalies that require neonatal surgery. Our
findings indicate that these women are at risk for
increased anxiety, and 53% of participants in our
study scored 40 or greater on the STAI during
pregnancy. In previous studies, women with STAI
scores at this level also met clinical criteria for
anxiety disorders (Grant et al., 2008). Through our
Table 1: Sociodemographic and Clinical Characteristics of Women With and Without Fetal
Anomalies Q6 Q7
Variable
Fetal Anomaly Group (n ¼ 19) Control Group (n ¼ 25)
pn (%) or Mean Æ SD n (%) or Mean Æ SD
Maternal age in years 28.89 Æ 7 31.12 Æ 7.8 .33
Gestational age in weeks 23.98 Æ 3.16 18.65 Æ 1.1 4.96
Race
White 10 (53) 12 (48)
Hispanic 5 (26) 6 (24) .93
Black or African American 3 (16) 6 (24)
Asian or Pacific Islander 1 (5) 1 (4)
Level of education
Higher education 16 (84) 20 (80) .72
High school/high school equivalency 3 (16) 5 (20)
Employment
Employed 15 (79) 16 (64) .28
Unemployed 4 (21) 9 (36)
Marital Status
Married 14 (74) 17 (68) .08
Relationship 3 (16) 5 (20)
Single 2 (10) 1 (4)
Annual household income
#$50,000 7 (37) 11 (44) 0.63
>$50,000 12 (63) 14 (56)
History of pregnancy complicationa
Yes 7 (37) 8 (32) .74
No 12 (63) 17 (68)
History of mental health conditionb
Yes 5 (26) 5 (20) .62
No 14 (74) 20 (80)
Parity
Nulliparous 8 (42) 10 (40) .89
Multiparous 11 (58) 15 (60)
a
Pregnancy complications included prior ectopic pregnancy, preterm birth, postpartum hemorrhage, gestational diabetes, miscarriage,
fetal anomaly, and cesarean birth. b
Mental health history included medical record data and patient report. Conditions included anxiety,
depression, postpartum depression, and borderline personality disorder.
Wilpers, A. B., Kennedy, H. P., Wall, D., Funk, M., and Bahtiyar, M. O. R E S E A R C H
JOGNN 2017; Vol. -, Issue - 5
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FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
findings we have also helped identify character-
istics that may be useful to target women in need
of more emotional support: older age and a his-
tory of mental health conditions.
The relationship between mental health history
and maternal perinatal anxiety has been well
documented (Hunfeld et al., 1993). However, the
positive association between age and maternal
state anxiety scores is a unique finding and may
be distinctive to women with pregnancies
complicated by a fetal anomaly. Most in-
vestigations of maternal age and anxiety in
pregnancy find younger age to be a risk factor
(Lee et al., 2007; Rezaee & Framarzi, 2014).
However, those studies did not focus on women
with pregnancy complications. Limited research
has been done to examine age and anxiety in
women who continue pregnancies complicated
by fetal anomalies. We could identify only one
previous study in which the researchers showed
that advanced maternal age was associated with
increased anxiety in this population (Horsch et al.,
2013). The lack of data may be related to the fact
that older women are more likely to terminate a
pregnancy when serious anomalies are present
(Schechtman, Gray, Baty, & Rothman, 2002). The
reasons for these findings have not been clari-
fied, and investigation of this phenomenon may
illuminate the apparent relationship between age
and maternal anxiety related to fetal anomalies.
Statistical trends found in this pilot study that may
have reached significance with a larger sample
size included the relationship of anxiety to a his-
tory of pregnancy complications and a more se-
vere diagnosis. These trends have been
observed in previous research (Forray, Mayes,
Magriples, & Epperson, 2009; Titapant &
Chuenwattana, 2015).
Most participants reported that knowledge of the
fetal care center’s nurse care coordinator
decreased their anxiety. Although these partici-
pants did have lower mean state anxiety scores,
the difference was not statistically significant,
most likely because of the small sample size and
lack of power. However, it is suggested in the
participants’ feedback that being informed of the
nurse care coordinator influenced their perceived
anxiety, which indicates a potential benefit for
maternal mental health. Further assessment of
the fetal care center nurse care coordinator role
may provide valuable information to improve care
for women and their families.
When given options for emotional support, most
participants were primarily interested in speaking
with other families who have had similar experi-
ences. A little more than half of the participants
also showed interest in support groups at the fetal
care center, but only one was interested in mental
health resources. This could be due to a stigma
associated with needing professional mental
health services that may not be as linked with less
“medical” methods of emotional support, such as
support groups and speaking with other families.
Understanding women’s perceptions of mental
health and emotional support services is key to
the implemention of effective interventions.
This pilot study was limited by its small sample
size, which may not have provided the power to
detect differences across groups. Some socio-
demographic categories had very small
numbers, which prevented between group com-
parisons. In addition, findings may not be repre-
sentative of the greater population of women
whose pregnancies are complicated by fetal
anomalies that require surgery. We also did not
control for current or past mental health di-
agnoses, or the use of reproductive assisted
technologies, which could confound our findings.
Table 2: Conditions of the Fetuses of
Women With Fetal Anomalies
Diagnosis n %
Minor anomalies
Gastroschisis 4 21.0
Congenital cystic adenomatoid
malformation
3 15.8
Pulmonary stenosis 2 10.5
Major anomalies
Hypoplastic right heart syndrome 2 10.5
Sacral myelomeningocele 2 10.5
Complete atrioventricular canal defect 2 10.5
Congenital diaphragmatic hernia 1 5.3
Hemivertebrae 1 5.3
Hypoplastic left heart syndrome 1 5.3
Sacrococcygeal teratoma 1 5.3
Most participants reported that being informed about the
availability of a nurse care coordinator decreased their
anxiety.
Maternal Anxiety and Fetal Anomalies Requiring SurgeryR E S E A R C H
6 JOGNN, -, -–-; 2017. http://dx.doi.org/10.1016/j.jogn.2017.02.001 http://jognn.org
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FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
Finally, the possible connections of fetal anoma-
lies, maternal anxiety, and subsequent maternal–
infant bonding or postpartum depression were
beyond the scope of this study, but these should
be explored in the future.
Implications
The findings from this pilot study are supportive of
the potential presence of risk factors that may be
used to identify women in greater need of
emotional support during pregnancies compli-
cated by fetal anomalies that require neonatal
surgery. Participants’ comments suggested that
they might not use professional mental health
services, even if resources were available. A
patient-centered and cost-effective alternative
would be to focus on interventions that allow
women to speak with other families who have had
similar experiences. The nurse coordinator is
central in the development and implementation of
these interventions and, as this study has rein-
forced, plays a key role in decreasing maternal
anxiety. If knowledge of the nurse coordinator has
a positive effect on women, then providers should
inform women about this service as soon as
possible. Referring practitioners should also
receive education about the nurse coordinator
role. This will allow obstetricians, midwives, family
physicians, and advanced practice nurses to
facilitate continuity of care as women are trans-
ferred to fetal care centers. Health care providers
should emphasize the benefits of the nurse
coordinator service and encourage women to
discuss their emotional support needs. Re-
searchers should examine potential models of
nursing care for this population and the effect on
women’s experiences during this challenging
time in their lives.
Conclusion
Women whose pregnancies are complicated by a
fetal anomaly that requires neonatal surgery are
at risk for anxiety that is associated with negative
Table 3: Sociodemographic and Clinical Associations with STAI Scores in Women With
and Without Fetal Anomalies
Variable
Anomaly Group (n ¼ 19),
Mean Æ SD p
Control Group (n ¼ 25),
Mean Æ SD p
State score 43.6 Æ 17.0 29.1 Æ 8.5 .002
Trait score 33.7 Æ 8.1 34.8 Æ 9.7 .68
Parity Nulliparous Multiparous Nulliparous Multiparous
State score 36.2 Æ 16.5 48.9 Æ 16.1 .12 27.9 Æ 6.1 29.8 Æ 9.9 .41
Trait score 32.7 Æ 8.8 34.4 Æ 7.9 .67 32.7 Æ 7.9 36.2 Æ 10.7 .35
Past pregnancy complication Pos History Neg History Pos History Neg History
State score 53.8 Æ 16.3 37.5 Æ 14.9 .052 Q830.8 Æ 8.4 28.2 Æ 8.6 .48
Trait score 33 Æ 4.3 34.1 Æ 9.8 .91 36.2 Æ 10.5 34.2 Æ 9.5 .64
Mental health history Pos History Neg History Pos History Neg History
State score 52.6 Æ 20.1 40.3 Æ 15.3 .27 28.2 Æ 3.1 28.9 Æ 9.3 .81
Trait score 39.2 Æ 4.2 32.2 Æ 8.6 .048 39.6 Æ 6.6 33.6 Æ10.1 .14
Fetal diagnosis severitya
Major Minor
State Score 48.5 Æ 17.5 38.1 Æ 15.6 .19
Note. Neg ¼ negative; Pos ¼ positive.
a
See Table 2.
print&web4C=FPOprint&web4C=FPOprint&web4C=FPO
Figure 1. Maternal age was positively associated with state
anxiety score in women with pregnancies complicated by
fetal anomalies. STAI ¼ State–Trait Anxiety Index.
Wilpers, A. B., Kennedy, H. P., Wall, D., Funk, M., and Bahtiyar, M. O. R E S E A R C H
JOGNN 2017; Vol. -, Issue - 7
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maternal and child outcomes. Fetal care centers,
with their multidisciplinary holistic approach to
prenatal care, provide an opportune environment
to examine these concerns. Nurses are central to
the advancement of research and clinical care in
this field.
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Maternal anxiety related to prenatal

  • 1. Maternal Anxiety Related to Prenatal Diagnoses of Fetal Anomalies That Require Surgery Q9Abigail B. Wilpers, Holly Powell Kennedy, Diane Wall, Marjorie Funk, and Mert Ozan Bahtiyar ABSTRACT Objectives: To investigate maternal anxiety in women with pregnancies complicated by fetal anomalies that require surgery. Design: Prospective comparison pilot study. Setting: A fetal care center in a Northeastern U.S. academic medical center. Participants: Women in their second or early third trimesters of pregnancy; 19 with pregnancies complicated by fetal anomalies and 25 without. Methods: After ultrasonography, all participants completed the Spielberger State–Trait Anxiety Inventory and a sociodemographic questionnaire. Participants with pregnancies complicated by fetal anomalies also answered questions about the causes of their anxiety, their awareness of the nurse care coordinator service, and desired methods of emotional support. Obstetric and mental health history data were abstracted from the medical records of both groups. Results: Participants with pregnancies complicated by fetal anomalies had greater mean state anxiety scores than those without (43.58 vs. 29.08, p ¼ .002). Maternal age was positively correlated with the state anxiety in women with fetuses with anomalies (r ¼ 0.59, p ¼ .008). Participants with histories of mental health issues had greater mean trait anxiety scores than those without (39.2 vs. 32.2, p ¼ .048). Most participants (68%) reported that knowledge of the fetal care center’s nurse care coordinator decreased their anxiety. Participants wanted the opportunity to speak with families who had similar experiences as a source of emotional support. Conclusion: Older maternal age may be a risk factor for anxiety in this population. Knowledge of the fetal care center nurse care coordinator service may have a positive effect and should be studied further. JOGNN, -, -–-; 2017. http://dx.doi.org/10.1016/j.jogn.2017.02.001 Accepted February 2017 An increasing number of fetal anomalies is being detected and managed during preg- nancy, in part because of advancements in ultrasonography and prenatal screening. Some of the most prevalent diagnoses are nonlethal fetal anomalies that can be corrected or treated surgically after birth (Parker et al., 2010). These newborns often undergo surgery within the first few days of life. The diagnosis and management processes for surgically treatable fetal anomalies are associated with significant maternal anxiety (Aite et al., 2006; Leithner et al., 2004; Rosenberg et al., 2010; Skari et al., 2006). However, women whose pregnancies are complicated by these fetal anomalies are often excluded from studies on the emotional effects of prenatal diagnoses, usually because of their more favorable prognoses compared with lethal and chromo- somal conditions. The risk for this population cannot be overlooked, because negative out- comes are associated with maternal anxiety in pregnancy. These outcomes can be severe, including preterm birth, newborns who are small for gestational age, and childhood neuro- developmental delays (Blair, Glynn, Sandman, & Davis, 2011; Kramer et al., 2009). Furthermore, evidence suggests that pregnancy-related anxi- ety is more strongly associated with preterm birth and adverse child outcomes than general anxiety and depression (Lobel et al., 2008). Multidisciplinary prenatal care through a fetal care center is the recommended standard prac- tice for women whose pregnancies are The authors report no con- flict of interest or relevant financial relationships. Correspondence Abigail B. Wilpers, MSN, WHNP-BC, Yale School of Nursing, Yale West Campus, P.O. Box 27399, West Haven, CT 06516- 7399. abigail.wilpers@yale.edu Keywords fetal care center fetal diagnosis fetal therapy fetal treatment center high-risk pregnancy maternal anxiety maternal experience nurse care coordinator surgical fetal anomaly Abigail B. Wilpers, MSN, WHNP-BC, is a doctoral student in the Yale School of Nursing, West Haven, CT. Holly Powell Kennedy, PhD, CNM, FACNM, FAAN, is the Executive Deputy Dean and Helen Varney Professor of Midwifery, Yale School of Nursing, West Haven, CT. (Continued) ª 2017 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved. http://jognn.org 1 R E S E A R C H 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 100 101 102 103 104 105 106 107 108 109 110 111 112 FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
  • 2. complicated by fetal anomalies (American College of Obstetricians and Gynecologists Committee on Ethics & American Academy of Pediatrics Committee on Bioethics, 2011). Coor- dinated multidisciplinary care and consultations by maternal–fetal medicine specialists, neo- natologists, and pediatric medical and surgical subspecialists have been shown to decrease maternal anxiety associated with the diagnosis of a fetal anomaly that requires surgery (Aite et al., 2002; Kemp, Davenport, & Pernet, 1998). In some centers, further steps to decrease maternal anxiety have been taken by integrating mental health professionals and emotional support services into the prenatal care team (e.g., psy- chologists, religious services, social workers, palliative care and/or child life specialists). The use of these interventions has shown to signifi- cantly decrease maternal anxiety, and they are widely recommended (Aite et al., 2002; Gorayeb, Gorayeb, Berezowski, & Duarte, 2013; Kemp et al., 1998; Langer & Ringler, 1989; Statham, Solomou, & Chitty, 2000). Although nurses provide care for women during pregnancy and the postnatal period, their role in the provision of psychological support to women and families in fetal care centers has not been well studied. At the center of the treatment team is the care coordinator, usually a nurse with an obstetric or pediatric background. This role has been described as “the linchpin” (Besuner & Imhoff, 2007), “the glue” (Moise, 2014), and “theQ1 fulcrum” (Chock, Davis, & Hintz, 2015) in the care of women during fetal diagnosis and treatment. A key aspect of the coordinator’s role involves psychosocial support, and this individual often serves as the primary contact for women and their families during the prenatal period. The nurse coordinator must assess emotional well- being and advocate for a woman’s necessary support (Besuner & Imhoff, 2007; Moise, Kugler, & Jones, 2012). The limited resources of many health care systems may preclude mental health services for all women enrolled at fetal care centers. In many cases, the nurse coordinator may be the primary emotional support for women. In these instances, it is important to assess which women are at increased riskQ2 so that resource-intensive interventions can be targeted. Establishing risk factors can help members of fetal care center teams identify women in need of additional psychosocial support. Staff at the cen- ters can develop patient-directed care by assessing which support methods women would be most likely to use to decrease their anxiety. Knowledge of risk factors for anxiety could contribute to targeting those in need of interven- tion, whereas factors associated with lower anxiety and feedback from participants could be used to inform development of future interventions. The objective of this pilot study was to investigate maternal anxiety in pregnancies complicated by fetal anomalies that require future surgery. This was done through (a) comparison of anxiety levels in women with and without pregnancies complicated by fetal anomalies that require surgery, (b) examination of the relationships among maternal anxiety and sociodemographic and clinical characteristics, (c) investigation of how information about the nurse care coordinator affected maternal anxiety, and (d) description of the women’s interest in potential methods of emotional support. Methods Design and Sample We conducted a prospective comparison pilot study at a fetal care center in a Northeastern U.S. academic medical center. The University’s Q3insti- tutional review board approved the study. Women were recruited through clinician referral in the fetal care center. Two groups of women who presented at the center for second trimester ultrasonography were eligible for the study. The first group included women with pregnancies complicated by a nonlethal, major structural fetal malformation that would require corrective surgery within the child’s first year of life. These women were not approached at the time of diagnosis but at a follow-up visit to the center once the decision had been made to continue the pregnancy and transfer their care to the center. Women whose fetuses had primary brain anom- alies were excluded because of the greater like- lihood of a residual impairment and poorer prognosis than most anomalies that require surgery. The second group included women who presented for routine ultrasonographic screening who had no fetal or obstetric complications. These women served as a control group and were approached after physician confirmation of normal ultrasonography results. Eligibility was limited to women who spoke English and were older than 18 years of age. Diane Wall, MSN, RN, CNE, is Program Coordinator of the Fetal Care Center, Yale New Haven Hospital, New Haven, CT. Marjorie Funk, PhD, RN, FAHA, FAAN, is the Helen Porter Jayne and Martha Prosser Jayne Professor of Nursing, Yale School of Nursing, West Haven, CT. Mert Ozan Bahtiyar, MD, is an associate professor of Obstetrics, Gynecology, and Reproductive Sciences, Yale School of Medicine and the Director of the Fetal Care Center, Yale New Haven Hospital, New Haven, CT. Evidence suggests that pregnancy-related anxiety is more strongly associated with preterm birth and adverse child outcomes than general anxiety and depression. Maternal Anxiety and Fetal Anomalies Requiring SurgeryR E S E A R C H 2 JOGNN, -, -–-; 2017. http://dx.doi.org/10.1016/j.jogn.2017.02.001 http://jognn.org 113 114 115 116 117 118 119 120 121 122 123 124 125 126 127 128 129 130 131 132 133 134 135 136 137 138 139 140 141 142 143 144 145 146 147 148 149 150 151 152 153 154 155 156 157 158 159 160 161 162 163 164 165 166 167 168 169 170 171 172 173 174 175 176 177 178 179 180 181 182 183 184 185 186 187 188 189 190 191 192 193 194 195 196 197 198 199 200 201 202 203 204 205 206 207 208 209 210 211 212 213 214 215 216 217 218 219 220 221 222 223 224 FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
  • 3. Fetal anomalies that require surgical correction are usually detected after a routine anatomic ultrasonographic examination around 18 to 20 weeks gestation. All participants were enrolled during the second trimester, with the exception of one participant who had completed the first week of her third trimester. The second trimester is the period in pregnancy least likely to be associated with anxiety (Rofe, Blittner, & Lewin, 1993). Thus, for women whose pregnancies are complicated by fetal anomalies, anxiety at this time may be more likely related to the anomaly diagnosis versus the common pregnancy anxieties seen in the first and third trimesters. Measures Anxiety levels were measured using the Spiel- berger State–Trait Anxiety Inventory (STAI), a self-rating instrument for the assessment of the current (state) and intrinsic (trait) level of anxiety. The construct validity of the scale is shown through substantial evidence. Researchers sug- gested that the STAI is the best instrument to measure prenatal anxiety symptomatology, with high validity and reliability in pregnant pop- ulations (Nast, Bolter, Meinlschmidt, & Hellhammer, 2013; Spielberger and Gorsuch, 1983). STAI scores of state and trait anxiety range from 20 to 80, with greater scores indi- cating greater levels of anxiety. Women who score greater than 40 on the STAI have been considered highly anxious (Bayrampour, McDonald, & Tough, 2015; Evans, Myers, & Monk, 2008; Giardinelli et al., 2012; Grant, McMahon, & Austin, 2008). Participants whose pregnancies were compli- cated by fetal anomalies were also assessed for pregnancy-related anxiety. There is a lack of standardization among instruments to measure pregnancy-related anxiety. Thus, we asked participants directly, If you feel that you are expe- riencing anxiety at this time in your life, please list the three things that you feel contribute most to your anxiety. We used the dimensions of preg- nancy anxiety described by Bayrampour and colleagues (2016) to guide a content analysis of the written responses. Sociodemographic data were collected from both groups. A data collection tool was used to abstract relevant clinical infor- mation on obstetric and mental health history from the medical records of both groups. Clinical infor- mation was used to categorize the fetal diagnoses as major or minor based on the criteria established by Titapant and Chuenwattana (2015), in which major diagnoses had a greater risk of a lasting impairment, and minor diagnoses were less se- vere, with little to no functional significance. Participants whose fetuses had anomalies were also asked about their knowledge of the fetal care center’s nurse care coordinator and how their anxiety was affected by receipt of this informa- tion. The goal of the center is to inform women of this service at the time of diagnosis and if a transfer of care is likely. Participants were first asked if they had been informed that there was a nurse who would be coordinating their care throughout the pregnancy. This was followed up with the question, Did information about the nurse care coordinator make you feel less anxious? For both questions participants could select yes, no, or not sure. Finally, participants were presented with a list of emotional support services and asked to select those services they would be interested in if they were offered by the center. The list included a support group at the fetal care center, the opportunity to speak with families who have had a similar experience, and mental health resources (at the care center or a referral to someone outside the care center). Data were collected at the center by the first author (A.B.W.), and no further participation was required. All data were de-identified. Associations Independent t tests and chi-square tests were used to determine if the groups of participants with and without pregnancies complicated by fetal anomalies were equal in their sociodemo- graphic and clinical characteristics. A two-tailed independent t test was used to compare anxiety state and trait levels between the groups with and without pregnancies complicated by fetal anom- alies that require surgery. Chi-square tests were used to compare the proportion of participants with high anxiety (state score >40) in each group. To analyze pregnancy-related anxiety, the first two authors (A.B.W. and H.P.K.) independently conducted a content analysis of all 41 answers and achieved 98% consensus. Two-tailed inde- pendent t test, one-way analysis of variance, and Pearson’s correlation were used to investigate the association of sociodemographic and clinical factors with maternal state and trait anxiety for all participants. To assess the influence of aware- ness of the nurse care coordinator, a two-tailed independent t test was used to compare anxiety scores of the participants who reported Wilpers, A. B., Kennedy, H. P., Wall, D., Funk, M., and Bahtiyar, M. O. R E S E A R C H JOGNN 2017; Vol. -, Issue - 3 225 226 227 228 229 230 231 232 233 234 235 236 237 238 239 240 241 242 243 244 245 246 247 248 249 250 251 252 253 254 255 256 257 258 259 260 261 262 263 264 265 266 267 268 269 270 271 272 273 274 275 276 277 278 279 280 281 282 283 284 285 286 287 288 289 290 291 292 293 294 295 296 297 298 299 300 301 302 303 304 305 306 307 308 309 310 311 312 313 314 315 316 317 318 319 320 321 322 323 324 325 326 327 328 329 330 331 332 333 334 335 336 FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
  • 4. decreased anxiety due to knowledge of the care coordinator with those who reported that infor- mation about the care coordinator did not influ- ence their anxiety. Interest in potential emotional support services was evaluated by total number of selections for each choice. All statistical ana- lyses were conducted using StatPlus (AnalystSoft Inc., Walnut, CA). Results Participants were recruited between August 2015 and February 2016. Of the 48 women who were approached, 44 consented and completed the questionnaires, 19 with fetuses with anomalies and 25 without. Four women without fetal anom- alies declined to participate because of time constraints. All women with fetuses with anoma- lies who were approached agreed to participate. This was a small pilot study; therefore, no a priori power analysis was done. Participants with and without pregnancies complicated by fetal anom- alies were comparable on all sociodemographic and clinical characteristics (see Table 1). The variety of fetal diagnoses and the distribution across severity groups are shown in Table 2. ScoresQ4 are reported as mean Æ standard deviation. Participants with pregnancies complicated by fetal anomalies had a greater mean state anxiety score than those without (43Q5 .58 vs. 29.08, p ¼ .002; see Table 3). The mean trait anxiety scores did not differ between the two groups: 33.74 Æ 8.09 for participants with fetuses with anomalies versus 34.84 Æ 9.72 for those without fetal or obstetric complications (p ¼ .68). Ten of the 19 participants (53%) whose fetuses had anomalies had state anxiety scores greater than the established cutoff of 40, which suggested greater anxiety. Only 3 of the 25 participants (12%) without current obstetric or fetal complications had state anxiety scores greater than 40 (p ¼ .003). Older maternal age was positively associated with greater state anxiety scores (r ¼ 0.59, p ¼ .008; see Figure 1) This relationship was not seen in the control group. There was no relationship between age and trait anxiety in either group. No other sociodemographic or clinical characteristics investigated were significantly associated with state anxiety. However, falling just short of signifi- cance (p ¼ .052), participants with pregnancies complicated by fetal anomalies who also had prior pregnancy complications (n ¼ 5) trended toward greater mean state scores than those in the fetal anomaly group who did not have prior preg- nancy complications (n ¼ 14, 53.8 Æ 16.3 vs. 37.5 Æ 14.9). Another trend that did not reach significance showed that participants with severe diagnoses had greater state anxiety scores than those with minor diagnoses (48.5 Æ 17.5 vs. 38.1 Æ 15.6, p ¼ 0.19; see Table 3). Only one association was found between trait anxiety and sociodemographic or clinical char- acteristics in either group. Participants whose pregnancies were complicated by fetal anoma- lies and had histories of mental health diagnoses had greater mean trait anxiety scores than the control group (39.2 Æ 4.2 vs. 32.2 Æ 8.6, p ¼ .048; see Table 3). When assessing pregnancy-related anxiety in participants whose pregnancies were complicated by fetal anomalies, three women declined and stated that they did not feel any anxiety. All three of these participants had diagnoses categorized as minor. One participant declined without stating a reason. Of the 41 responses, 39 were pregnancy- related, and of these, 32 were specifically related to the fetal complication. Descriptors included worried about my baby needing surgery, finances to support baby with special needs, and anxious about my baby’s prognosis: quality of life. Thus, high state anxiety was determined to be pregnancy-related anxiety and, more specifically, related to the fetal anomaly. Most participants (84%) were aware of the fetal care center nurse care coordinator and her role. Most (68%) reported that being informed of the nurse care coordinator had decreased their anxiety. Participants who reported feeling that the information about the nurse care coordinator decreased their anxiety had a lower mean state anxiety score than those who denied or were unsure that this information decreased their anxiety (39.61 Æ 16.32 vs. 52.15 Æ 16.67), but this difference was not statistically significant (p ¼ .16). Finally, when asked about what potential emotional support services they would be interested in if offered by the fetal care center, 10 participants (53%) expressed interest in a support group, and 15 participants (79%) were interested in speaking with a family who had a similar experience to theirs. Only one participant Older maternal age was positively associated with greater state anxiety scores. Maternal Anxiety and Fetal Anomalies Requiring SurgeryR E S E A R C H 4 JOGNN, -, -–-; 2017. http://dx.doi.org/10.1016/j.jogn.2017.02.001 http://jognn.org 337 338 339 340 341 342 343 344 345 346 347 348 349 350 351 352 353 354 355 356 357 358 359 360 361 362 363 364 365 366 367 368 369 370 371 372 373 374 375 376 377 378 379 380 381 382 383 384 385 386 387 388 389 390 391 392 393 394 395 396 397 398 399 400 401 402 403 404 405 406 407 408 409 410 411 412 413 414 415 416 417 418 419 420 421 422 423 424 425 426 427 428 429 430 431 432 433 434 435 436 437 438 439 440 441 442 443 444 445 446 447 448 FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
  • 5. (5%) expressed an interest in mental health re- sources (within the fetal care center and/or an outside referral). Discussion In this pilot study, we sought to better understand maternal anxiety in pregnancies complicated by fetal anomalies that require neonatal surgery. Our findings indicate that these women are at risk for increased anxiety, and 53% of participants in our study scored 40 or greater on the STAI during pregnancy. In previous studies, women with STAI scores at this level also met clinical criteria for anxiety disorders (Grant et al., 2008). Through our Table 1: Sociodemographic and Clinical Characteristics of Women With and Without Fetal Anomalies Q6 Q7 Variable Fetal Anomaly Group (n ¼ 19) Control Group (n ¼ 25) pn (%) or Mean Æ SD n (%) or Mean Æ SD Maternal age in years 28.89 Æ 7 31.12 Æ 7.8 .33 Gestational age in weeks 23.98 Æ 3.16 18.65 Æ 1.1 4.96 Race White 10 (53) 12 (48) Hispanic 5 (26) 6 (24) .93 Black or African American 3 (16) 6 (24) Asian or Pacific Islander 1 (5) 1 (4) Level of education Higher education 16 (84) 20 (80) .72 High school/high school equivalency 3 (16) 5 (20) Employment Employed 15 (79) 16 (64) .28 Unemployed 4 (21) 9 (36) Marital Status Married 14 (74) 17 (68) .08 Relationship 3 (16) 5 (20) Single 2 (10) 1 (4) Annual household income #$50,000 7 (37) 11 (44) 0.63 >$50,000 12 (63) 14 (56) History of pregnancy complicationa Yes 7 (37) 8 (32) .74 No 12 (63) 17 (68) History of mental health conditionb Yes 5 (26) 5 (20) .62 No 14 (74) 20 (80) Parity Nulliparous 8 (42) 10 (40) .89 Multiparous 11 (58) 15 (60) a Pregnancy complications included prior ectopic pregnancy, preterm birth, postpartum hemorrhage, gestational diabetes, miscarriage, fetal anomaly, and cesarean birth. b Mental health history included medical record data and patient report. Conditions included anxiety, depression, postpartum depression, and borderline personality disorder. Wilpers, A. B., Kennedy, H. P., Wall, D., Funk, M., and Bahtiyar, M. O. R E S E A R C H JOGNN 2017; Vol. -, Issue - 5 449 450 451 452 453 454 455 456 457 458 459 460 461 462 463 464 465 466 467 468 469 470 471 472 473 474 475 476 477 478 479 480 481 482 483 484 485 486 487 488 489 490 491 492 493 494 495 496 497 498 499 500 501 502 503 504 505 506 507 508 509 510 511 512 513 514 515 516 517 518 519 520 521 522 523 524 525 526 527 528 529 530 531 532 533 534 535 536 537 538 539 540 541 542 543 544 545 546 547 548 549 550 551 552 553 554 555 556 557 558 559 560 FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
  • 6. findings we have also helped identify character- istics that may be useful to target women in need of more emotional support: older age and a his- tory of mental health conditions. The relationship between mental health history and maternal perinatal anxiety has been well documented (Hunfeld et al., 1993). However, the positive association between age and maternal state anxiety scores is a unique finding and may be distinctive to women with pregnancies complicated by a fetal anomaly. Most in- vestigations of maternal age and anxiety in pregnancy find younger age to be a risk factor (Lee et al., 2007; Rezaee & Framarzi, 2014). However, those studies did not focus on women with pregnancy complications. Limited research has been done to examine age and anxiety in women who continue pregnancies complicated by fetal anomalies. We could identify only one previous study in which the researchers showed that advanced maternal age was associated with increased anxiety in this population (Horsch et al., 2013). The lack of data may be related to the fact that older women are more likely to terminate a pregnancy when serious anomalies are present (Schechtman, Gray, Baty, & Rothman, 2002). The reasons for these findings have not been clari- fied, and investigation of this phenomenon may illuminate the apparent relationship between age and maternal anxiety related to fetal anomalies. Statistical trends found in this pilot study that may have reached significance with a larger sample size included the relationship of anxiety to a his- tory of pregnancy complications and a more se- vere diagnosis. These trends have been observed in previous research (Forray, Mayes, Magriples, & Epperson, 2009; Titapant & Chuenwattana, 2015). Most participants reported that knowledge of the fetal care center’s nurse care coordinator decreased their anxiety. Although these partici- pants did have lower mean state anxiety scores, the difference was not statistically significant, most likely because of the small sample size and lack of power. However, it is suggested in the participants’ feedback that being informed of the nurse care coordinator influenced their perceived anxiety, which indicates a potential benefit for maternal mental health. Further assessment of the fetal care center nurse care coordinator role may provide valuable information to improve care for women and their families. When given options for emotional support, most participants were primarily interested in speaking with other families who have had similar experi- ences. A little more than half of the participants also showed interest in support groups at the fetal care center, but only one was interested in mental health resources. This could be due to a stigma associated with needing professional mental health services that may not be as linked with less “medical” methods of emotional support, such as support groups and speaking with other families. Understanding women’s perceptions of mental health and emotional support services is key to the implemention of effective interventions. This pilot study was limited by its small sample size, which may not have provided the power to detect differences across groups. Some socio- demographic categories had very small numbers, which prevented between group com- parisons. In addition, findings may not be repre- sentative of the greater population of women whose pregnancies are complicated by fetal anomalies that require surgery. We also did not control for current or past mental health di- agnoses, or the use of reproductive assisted technologies, which could confound our findings. Table 2: Conditions of the Fetuses of Women With Fetal Anomalies Diagnosis n % Minor anomalies Gastroschisis 4 21.0 Congenital cystic adenomatoid malformation 3 15.8 Pulmonary stenosis 2 10.5 Major anomalies Hypoplastic right heart syndrome 2 10.5 Sacral myelomeningocele 2 10.5 Complete atrioventricular canal defect 2 10.5 Congenital diaphragmatic hernia 1 5.3 Hemivertebrae 1 5.3 Hypoplastic left heart syndrome 1 5.3 Sacrococcygeal teratoma 1 5.3 Most participants reported that being informed about the availability of a nurse care coordinator decreased their anxiety. Maternal Anxiety and Fetal Anomalies Requiring SurgeryR E S E A R C H 6 JOGNN, -, -–-; 2017. http://dx.doi.org/10.1016/j.jogn.2017.02.001 http://jognn.org 561 562 563 564 565 566 567 568 569 570 571 572 573 574 575 576 577 578 579 580 581 582 583 584 585 586 587 588 589 590 591 592 593 594 595 596 597 598 599 600 601 602 603 604 605 606 607 608 609 610 611 612 613 614 615 616 617 618 619 620 621 622 623 624 625 626 627 628 629 630 631 632 633 634 635 636 637 638 639 640 641 642 643 644 645 646 647 648 649 650 651 652 653 654 655 656 657 658 659 660 661 662 663 664 665 666 667 668 669 670 671 672 FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
  • 7. Finally, the possible connections of fetal anoma- lies, maternal anxiety, and subsequent maternal– infant bonding or postpartum depression were beyond the scope of this study, but these should be explored in the future. Implications The findings from this pilot study are supportive of the potential presence of risk factors that may be used to identify women in greater need of emotional support during pregnancies compli- cated by fetal anomalies that require neonatal surgery. Participants’ comments suggested that they might not use professional mental health services, even if resources were available. A patient-centered and cost-effective alternative would be to focus on interventions that allow women to speak with other families who have had similar experiences. The nurse coordinator is central in the development and implementation of these interventions and, as this study has rein- forced, plays a key role in decreasing maternal anxiety. If knowledge of the nurse coordinator has a positive effect on women, then providers should inform women about this service as soon as possible. Referring practitioners should also receive education about the nurse coordinator role. This will allow obstetricians, midwives, family physicians, and advanced practice nurses to facilitate continuity of care as women are trans- ferred to fetal care centers. Health care providers should emphasize the benefits of the nurse coordinator service and encourage women to discuss their emotional support needs. Re- searchers should examine potential models of nursing care for this population and the effect on women’s experiences during this challenging time in their lives. Conclusion Women whose pregnancies are complicated by a fetal anomaly that requires neonatal surgery are at risk for anxiety that is associated with negative Table 3: Sociodemographic and Clinical Associations with STAI Scores in Women With and Without Fetal Anomalies Variable Anomaly Group (n ¼ 19), Mean Æ SD p Control Group (n ¼ 25), Mean Æ SD p State score 43.6 Æ 17.0 29.1 Æ 8.5 .002 Trait score 33.7 Æ 8.1 34.8 Æ 9.7 .68 Parity Nulliparous Multiparous Nulliparous Multiparous State score 36.2 Æ 16.5 48.9 Æ 16.1 .12 27.9 Æ 6.1 29.8 Æ 9.9 .41 Trait score 32.7 Æ 8.8 34.4 Æ 7.9 .67 32.7 Æ 7.9 36.2 Æ 10.7 .35 Past pregnancy complication Pos History Neg History Pos History Neg History State score 53.8 Æ 16.3 37.5 Æ 14.9 .052 Q830.8 Æ 8.4 28.2 Æ 8.6 .48 Trait score 33 Æ 4.3 34.1 Æ 9.8 .91 36.2 Æ 10.5 34.2 Æ 9.5 .64 Mental health history Pos History Neg History Pos History Neg History State score 52.6 Æ 20.1 40.3 Æ 15.3 .27 28.2 Æ 3.1 28.9 Æ 9.3 .81 Trait score 39.2 Æ 4.2 32.2 Æ 8.6 .048 39.6 Æ 6.6 33.6 Æ10.1 .14 Fetal diagnosis severitya Major Minor State Score 48.5 Æ 17.5 38.1 Æ 15.6 .19 Note. Neg ¼ negative; Pos ¼ positive. a See Table 2. print&web4C=FPOprint&web4C=FPOprint&web4C=FPO Figure 1. Maternal age was positively associated with state anxiety score in women with pregnancies complicated by fetal anomalies. STAI ¼ State–Trait Anxiety Index. Wilpers, A. B., Kennedy, H. P., Wall, D., Funk, M., and Bahtiyar, M. O. R E S E A R C H JOGNN 2017; Vol. -, Issue - 7 673 674 675 676 677 678 679 680 681 682 683 684 685 686 687 688 689 690 691 692 693 694 695 696 697 698 699 700 701 702 703 704 705 706 707 708 709 710 711 712 713 714 715 716 717 718 719 720 721 722 723 724 725 726 727 728 729 730 731 732 733 734 735 736 737 738 739 740 741 742 743 744 745 746 747 748 749 750 751 752 753 754 755 756 757 758 759 760 761 762 763 764 765 766 767 768 769 770 771 772 773 774 775 776 777 778 779 780 781 782 783 784 FLA 5.4.0 DTD Š JOGN202_proof Š 5 April 2017 Š 4:38 pm Š ce
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