Journal of Perinatology (2006) 26, 44–48
r 2006 Nature Publishing Group All rights reserved. 0743-8346/06 $30
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ORIGINAL ARTICLE
Communicating with parents of premature infants: who is the
informant?
WJ Kowalski1, KH Leef2, A Mackley2, ML Spear2 and DA Paul2
1
Department of Neonatology, Lehigh Valley Hospital, Allentown, PA, USA and 2Department of Neonatology, Christiana Care Health
System, Newark, DE, USA
Objectives: To determine what sources of information are most helpful for
neonatal intensive care unit (NICU) parents, who provides NICU parents
with the information, and also what expectations parents have regarding
obtaining information.
Study design: A 19-item questionnaire was given to the parents of
infants 32 weeks or younger prior to discharge from the NICU.
Results: Out of the 101 parents who consented, almost all of the parents
(96%) felt that ‘the medical team gave them the information they needed
about their baby’ and that the ‘neonatologist did a good job of
communicating’ with them (91%). However, the nurse was chosen as ‘the
person who spent the most time explaining the baby’s condition, ‘the best
source of information,’ and the person who told them ‘about important
changes in their baby’s condition’ (P<0.01).
Conclusion: Although the neonatologist’s role in parent education is
satisfactory, the parents identified the nurses as the primary source of
information.
Journal of Perinatology (2006) 26, 44–48. doi:10.1038/sj.jp.7211409;
published online 17 November 2005
Keywords: neonatal intensive care; satisfaction
Introduction
One out of every eight babies is born prematurely in the United
States. The birth of a premature infant is a stressful event. The
major concerns of neonatal intensive care unit (NICU) parents’
during this stressful time are their informational needs, their grief
response, their parent–child role development, stress and coping,
and social support.1–4 In most studies, parents communicated that
their need for information was one of their most important
concerns. Parents want ‘clear and honest information,’3,5 and have
commented that they have had ‘difficulty in obtaining accurate
Correspondence: Dr W Kowalski, Division of Neonatology, Lehigh Valley Hospital, Cedar Crest
and I-78, PO Box 689, Allentown, PA 18105, USA.
E-mail: Wendy_J.Kowalski@lvh.com
Received 28 April 2005; revised 16 September 2005; accepted 19 September 2005; published
online 17 November 2005
and up-to-date information’.6 Obtaining information is important
because it helps parents assume their parenting role, gives them
some sense of involvement and control while decreasing their
feelings of stress, and helps them cope with the fear and
uncertainty of the situation.2,7 Without adequate communication
with the medical team and adequate teaching, parents are at risk
for maladjustment and preterm infants are at risk for abuse and
neglect, failure to thrive and poor social adjustment.2,7,8
Owing to the profound consequences of poor doctor–-patient
communication and the concerns of NICU parents,
communication was made one of the priorities of the ‘Principles of
Family Centered Care’ published in 1993.9 The number one
principle states that ‘family centered neonatal care should be based
on open and honest communication between parents and
professionals on medical and ethical issues’. Although previous
research has focused on parent education,10 the times for
teaching,5,7 and the internet as a source of information,12 there
has been little research in regards to the specifics of ‘open and
honest communication’. It is not known from whom or from what
source parents want to receive the ‘clear and honest information’.
The objectives of this study were to determine what sources of
medical information are most helpful for NICU parents, who
provides parents with the medical information, and also what
expectations parents have regarding obtaining clear medical
information. We achieved these goals by administering a
questionnaire to parents of premature infants in our NICU.
Methods
The study was conducted at Christiana Care Health Systems
(CCHS), a 50 bed, Level III regional, NICU, caring for both inborn
(90%) and outborn (10%) infants. The NICU is served by eight
attending neonatologists, nine neonatal fellows, residents in
pediatrics and other areas of medicine, neonatal nurse
practitioners, and pediatric hospitalists. The NICU has a 24-h open
visitation policy. Parents are allowed to be present during daily
rounds. The study was approved by the Institutional Review Board
at CCHS, and all parents signed informed written consent before
participation.
Communicating with parents in the NICU
WJ Kowalski et al
45
A 19-item questionnaire was developed by two of the authors
(WK, DP) and was modeled closely after a previous validated
questionnaire regarding the NICU parent and prenatal consults.11
Content validity of the questionnaire was assured by administering
the questionnaire to six health care providers, three NICU parents,
and two epidemiologists prior to the study. The group of health
care professionals consisted of four neonatal nurses and two
neonatal nurse practitioners. Two of the nurses also provided
insight as parents because they had premature infants that
required care in a NICU. The questionnaire was then modified
based on their comments and suggestions. The questionnaire
consisted of multiple choice questions, yes/no questions, 5-point
Likert scale questions, and open-ended questions. It was designed
to take approximately 15 min to complete. The nursing staff, nurse
practitioners, fellows in neonatology, and neonatologists were
aware of the ongoing study. However, the specific content of the
study questionnaire was not revealed to these practitioners so that
they could not alter their communication styles.
All mothers and fathers of infants 32 weeks gestational age or
younger who were admitted to the nursery between August 2002
and September 2003 and were English speaking were eligible for
the study. There were no exclusions except for a gestational age
greater than 32 weeks in order to allow for at least 2 weeks of NICU
experience when they filled out the questionnaire. The research
team approached mothers and/or fathers for consent when it
was estimated that their infant(s) was going to be discharged from
the special care nursery within a week. Parents were assured of
confidentiality and anonymity. A questionnaire and sealable
envelope were left with each parent who consented. Parents
were allowed as much time as they needed to fill out the
questionnaire.
Data on the infants of those parents that participated in the
study were obtained from medical records. Gestational age was
classified by obstetrical estimate or by Ballard exam13 if obstetrical
estimate was not available. For the purposes of this study,
respiratory distress syndrome was defined as the need for surfactant
and mechanical ventilation. Number of oxygen days was defined as
the total number of days on any mode of oxygen delivery. Sepsis
was defined as having a positive blood culture for bacteria or
fungus. Intraventricular hemorrhage was classified as described by
Papile.14 Infants were considered to have retinopathy of
prematurity (ROP) if they had a minimum of Stage I ROP as
diagnosed by a pediatric ophthalmologist. Score for neonatal acute
physiology (SNAP score) was calculated during the first 24 h
of life.15
Data were analyzed using Statistica 5.1s (Statsoft, Inc., Tulsa,
OK, USA). Descriptive statistics were used to describe the population
and the infants. Statistical significance was determined by means
of the w2 test. A P valuep0.01 was considered statistically
significant. Based on the fact that multiple comparisons were
made, a P<0.01 was used for comparison.
Results
A total of 126 parents were approached and asked to participate in
the study, 120 agreed to participate, six refused to take part in the
study, and 101 returned a completed questionnaire (80% response
rate). Within the 101 parents that completed the questionnaire,
there were 20 mother–father dyads. Also, among these 101 parents,
there were 102 infants including one set of quintuplets, one set of
quadruplets, four sets of triplets and 11 sets of twins. Four babies
out of these sets of multiples died prior to the discharge of their
surviving siblings. Demographics of the study sample are presented
in Table 1.
Parents were asked about what sources of information were
helpful to them while in the NICU. In the study sample, 96% (97/
101) said that they felt that ‘the medical team gave them the
information they needed about their baby’. In contrast, only 8% (8/
101) said that they ‘obtained most of their information from books
or the internet’. Of the parents that have internet access, 24%, said
that the ‘information on the internet was frightening’ and 67% said
that they spent ‘less than 1 h per week researching information
about their baby on the internet’. Although the medical team was
the primary source of information, 64% (64/101) of parents said
they spent ‘at least 1 h per week reading about their baby’s medical
condition’ in books.
Table 2 shows a comparison between the neonatologist and the
nurse when parents were asked a series of questions about whom
from the medical team gave them the information they needed.
Parents were also given the choice of answering nurse practitioner
Table 1 Patient demographics
Range
Mothers (n)
Fathers (n)
Mean age (years)a
College education (%)
Married (%)
Internet access (%)
Babies (n)
Multiple gestation (n)
Infant gender (%male/%female)
Gestational age (weeks)a
Birth weight (g)a
Length of stay (days)a
O2 (days)a
Respiratory distress syndrome (%)
Culture proven sepsis (%)
Necrotizing enterocolitis (%)
Retinopathy of prematurity (%)
Intraventricular hemorrhage (%)
SNAP scorea
a
71
30
29.7±6
59
71
84
102
17
45/57
28±2
1228±384
50±24
36±29
73
28
14
27
24
11.9±7
18–55
24–32
530–2419
1–107
0–106
2–44
Mean±s.d.
Journal of Perinatology
Communicating with parents in the NICU
WJ Kowalski et al
46
Table 2 Comparison between the neonatologist and the nurse when parents were asked a series of questions about who from the medical team gave
them the information they needed
Question
Neonatologist
Nurse
P-value
‘The person who spent the most time explaining the baby’s condition’
‘The best source of information about the baby’
The person who ‘told them about important changes in their baby’s medical condition’
The person who they ‘expected to tell them about important changes in their baby’s medical condition’
I usually felt ‘less worried’ after speaking toy
12/75 (16%)
22/101 (22%)
23/101 (23%)
62/101 (63%)
68/101 (68%)
56/75 (75%)
68/101 (69%)
66/101 (67%)
31/101(31%)
84/101(86%)
<0.01
<0.01
<0.01
<0.01
<0.01
for each of the questions. Owing to the small number of responses,
the data concerning nurse practitioners were not included in the
table. As noted in the table, when parents were asked ‘the person
who spent the most time explaining the baby’s condition to you,’
‘who the best source of information about their baby’ was, and who
‘told them about important changes in their baby’s medical
condition,’ the majority chose the nurse instead of the
neonatologist. In contrast, when asked who they ‘expected to tell
them about important changes in their baby’s medical condition,’
the majority said the neonatologist instead of the nurse. More
parents said they felt ‘less worried’ after speaking to the nurse as
opposed to the neonatologist.
Concerning the neonatologist as an effective communicator of
information, 91% (92/101) said that the ‘neonatologist did a good
job of communicating with me,’ 76% (75/99) said that the time
the neonatologist spent with them was ‘just right,’ 88% (88/101)
said that the medical detail provided by the neonatologist was ‘just
right’ and 65% (64/101) said that they were able to understand the
neonatologist ‘all of the time’. Parents reported that the
neonatologist spoke to them ‘every day’ (26% or 26/101), ‘a few
times a week’ (45% or 45/101), or ‘once a week or less’ (28% or
28/101). The majority of parents, 78% (78/101), felt the
‘neonatologist was available to them during the day if they needed
to speak to him or her’ and that the ‘neonatologist took the time to
speak to them about their baby (94% or 94/101).
Parents were asked a series of questions about where and when
they were given information by the neonatologist. They were
allowed to choose more than one answer. They reported that most
of the information given to them was ‘during rounds’ (64% said
yes vs 36% that said no) as opposed to ‘during the prenatal consult’
(25% said yes), ‘immediately after delivery’ (31% said yes), during
a ‘time separate from rounds’ (47% said yes), or ‘before discharge’
(12% said yes). In agreement with this, was parental response to
the question of where and when they felt was the ‘best time(s) to be
given information’. Again, the majority of parents (67%) said that
‘during rounds’ was the ‘best time to be given information’ as
opposed to ‘during the prenatal consult’ (36%), ‘immediately after
delivery’ (39%), or ‘before discharge’ (30%). In all, 59% also
reported that a ‘time separate from rounds’ would be the ‘best time
to hear information’.
Journal of Perinatology
Table 3 Responses of parents about the amount of information
regarding specific problems associated with prematurity that was provided
to them during their NICU stay
Amount of information provided to parents (%)
Too
much
Mortality
Respiratory distress syndrome
Intraventricular hemorrhage
Bronchopulmonary dysplasia
Transfusions
Sepsis
Retinopathy of prematurity
Permanent neurological
damage
Stressors of being in the
NICU
5 (5%)
1 (1%)
1 (1%)
2
1
1
1
(2%)
(1%)
(1%)
(1%)
3 (3%)
Just
right
52
65
47
38
68
45
46
42
(53%)
(67%)
(48%)
(40%)
(70%)
(48%)
(47%)
(43%)
45 (46%)
5
11
19
14
11
11
23
17
Too
little
Not
explained
(5%)
(11%)
(20%)
(15%)
(11%)
(12%)
(23%)
(17%)
28
11
20
33
12
30
22
32
21 (21%)
(29%)
(11%)
(21%)
(34%)
(12%)
(32%)
(22%)
(33%)
28 (29%)
The last section of the questionnaire was a series of questions
about the information that was given to parents regarding certain
preterm diagnoses and NICU issues. As shown in Table 3, though
the majority of parents felt that the information that was given to
them on all the topics was ‘just right,’ especially respiratory distress
syndrome and transfusions, there was a considerable number of
parents that reported that these problems were either ‘not
explained’ or that ‘too little information’ was given. This was
especially true for intraventricular hemorrhage, retinopathy of
prematurity, permanent neurological damage and stressors
associated with being in the NICU. Only a few parents said the
information on any of the above-mentioned topics was ‘too much’.
Discussion
Although there have been studies looking at the NICU parent’s
need for information and the impact of inadequate
communication on NICU parents, there have not been any studies
to date that address from whom NICU parents obtain the ‘clear and
honest’ medical information they need and whether or not it was
meeting their expectations. Even the Family Centered Care
Communicating with parents in the NICU
WJ Kowalski et al
47
Principles do not define the ‘who’ of communication. They simply
state that ‘professionals’ are to communicate with parents. The
main finding of our investigation is that parents feel they obtain a
majority of their medical information from the nursing staff.
Despite the fact that parents reported that nurses spent the most
time explaining their baby’s condition to them, were the best
source of information about their baby, and made them feel ‘less
worried,’ almost all of the parents were pleased with their
communication with the neonatologist.
Our study explored when and how often neonatologists speak to
parents. This was particularly important in light of the finding that
parents were pleased with the communication with the
neonatologist despite the fact that they feel they obtain a majority
of their medical information from the nursing staff. The majority
of parents felt that during rounds or a time separate from rounds
are the best times to get information as opposed to immediately
after delivery or before discharge. This finding highlights parent’s
desire for ongoing communication throughout the hospital stay
rather than on admission or before going home, which can be very
difficult times for NICU parents. When interpreting our study it is
important to note that parents were allowed to be present for
rounds. The practice of allowing parents to remain during rounds
is controversial;16,17 however, finding the time to update parents
daily in a busy NICU may be difficult. In our study sample, the
majority of parents felt that the neonatologist spent the right
amount of time with them and gave them the right amount of
information, even though 45% of parents said the neonatologist
spoke to them only ‘a few times a week’. Parents’ expectations of
physician communication were not as we had expected. Whether
parents felt that physician communication was ‘right’ because the
nursing staff did such a good job in updating them that they did
not feel the need to speak with a physician every day, or because
parents simply did not expect to speak to a physician each day is
not clear. We speculate that, communicating with parents, even
briefly, every day during rounds would further improve
communication.
Although about half of parents felt that the information they
were told about mortality, intraventricular hemorrhage,
bronchopulmonary dysplasia, sepsis, retinopathy of prematurity,
the risk of permanent neurological damage and the stressors
associated with being in the NICU was just right, there are certain
topics of information that some parents identified as receiving too
little information about or none at all. About 20–30% of parents
said that the risk of permanent neurological damage,
intraventricular hemorrhage, mortality, and the stressors associated
with being in the NICU were not explained sufficiently. All of these
morbidities are emotionally difficult topics. It is possible that the
parents were counseled on these subjects and simply blocked out
the information afterwards. Each topic is pertinent to a 30–32
week infant no matter how ‘well appearing’. We speculate that
mortality may not be discussed with the parents of 30–32 weeks
babies, because the neonatologists’ see the newborn as ‘big’ and as
having a low rate of mortality. However, to an overwhelmed parent
who expected a term infant, a 30–32 week infant appears critically
ill and at risk for dying and so the issue of mortality should be
addressed.
Although most parents have internet access, parents preferred
and relied on personal communication with the medical team to
receive medical information. In our study sample, parents did not
describe the internet as an important source of information. In all,
96% of parents felt that the medical team gave them the
information that they needed about their baby as opposed to books
or the internet. This data is in agreement with a study by Dhillon
et al.,11 which revealed that a greater proportion of parents use the
internet for medical and nonmedical information prior to the birth
of their infant compared to afterwards, and that many parents view
the information as unreliable. Only 10% of their study population
thought the medical information was reliable and 24% of our
population thought the information on the internet was more
frightening. This is important to know for two reasons. Our data
indicate that parents still value communication with the health
care team. The computer is not a substitute for the information
that should be provided to them by nurses and physicians. During
the crisis of having a premature baby, parents are looking to
nurses and physicians for reliable information concerning their
hospitalized infant.
A few limitations of our study should be mentioned. The study
was performed in a single level 3 NICU in a suburban area with
the majority of parents having a college education. These results
may not be applicable to other populations with different
expectations and/or different needs. Administering the same
questionnaire to parents in an inner city NICU would be helpful.
Communication may have been affected by the fact that the NICU
is a teaching hospital with residents and fellows in-house 24 h,
rather than attending neonatologists. A 24 h in-house attending
coverage may change the dynamics between parents and medical
staff by giving them more accessibility to the neonatologists rather
than using the nurse as a primary source of information. However,
we cannot be completely sure if parents are aware of the difference
between the attending neonatologist, the fellow, the resident and
the nurse practioner, particularly at night. The bedside nurse has a
clearly defined role throughout the baby’s hospitalization, day or
night. The other ‘caretakers’ roles overlap and may not be as clear
to parents, which may have influenced their responses. Open
rounds with parents, and collaboration amongst the medical team,
is encouraged in our NICU. In institutions where rounds are closed
to parents, communication must de facto occur at times separate
from rounds. And lastly, infants were still hospitalized at the time
the questionnaire was filled out. This may introduce some bias in
that parents may not be as open and honest while their baby is still
under the care of the medical team they are evaluating. An
alternative would be to have parents fill out the questionnaire after
Journal of Perinatology
Communicating with parents in the NICU
WJ Kowalski et al
48
discharge or in follow-up clinic. The questionnaire was given to
parents prior to hospital discharge in order to improve return. At
the time of discharge, parents may not fully realize the impact of
some long-term neurologic or pulmonary sequelae. Parents’
perception of communication may be very different at a time more
removed from hospital discharge.
In summary, the main finding of our investigation is that
parents are pleased with the level of communication with the
neonatologist, despite describing the nursing staff as the primary
source of medical information. The internet played only a minor
role as a source of medical information. There are important
clinical implications to determine that nurses are the primary
source of information for parents in the NICU. By having
collaborative open rounds with nursing, supporting nursing
education, and developing a formal nurse–physician
interdisciplinary collaboration we can continue to improve
communication and ensure that parents receive accurate, up-todate, and consistent information. By encouraging parents to utilize
the bedside nurses for information about their baby, neonatologists
can continue to improve communication and thus hopefully
decrease the risk for NICU family maladjustment and the risk of
abuse and neglect for the premature infant.
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