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Minimizing Parental Posttraumatic Stress Disorder in the NICU:
An Efficacy Analysis of Trauma Counseling

Mhylee Allen
Arizona State University

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Abstract
The birth of a new baby is known to be a joyful time for families. However, such a treasured
experience can quickly reroute in a matter of moments which leaves the family feeling helpless,
frightened, and guilty. The innate process of bonding and attachment is interrupted by the
resuscitative course following a traumatic birth. Separation, grief, anger, and fear promote
what’s being deemed more and more frequently as parental posttraumatic stress disorder
(PTSD). Rates of parental PTSD associated with separation at birth are equivalating those of
post-partum depression and post-partum psychosis. Emotionally unstable parents are unable to
adequately care for their newborn for both short and long term needs. Facilitation and support of
the parental role in an altered environment, such as a neonatal intensive care unit (NICU), is
thought to create opportunities for relationship security. Establishment of an emotionally
invested caregiver has been proven to minimize sequelae of the NICU patient, reduce length of
stay, cut readmission rates, and lower the incidence of failure to thrive post-discharge. A
parental psychosocial program was instituted in a 32-bed NICU within a southwest children’s
hospital. The program efficacy was analyzed several months after implementation. Results are
concurrent with the thought that individual counseling for NICU families reduces stress scores
and improves patient satisfaction at discharge.

Keywords: NICU, parental PTSD, post-partum depression, parental empowerment, neonatal
attachment, neonatal bonding, kangaroo care, non-nutritive breastfeeding, parental rounding,
neonatal parental role, neonatal intensive care, posttraumatic stress disorder

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Parental Posttraumatic Stress Disorder
The birth of a new baby is known to be a joyful time for families. However, such a
treasured experience can quickly reroute in a matter of moments which leaves a family feeling
helpless, frightened, and guilty. While a variety of distressing reactions are normative during
this time, significant and prolonged parental distress, including posttraumatic stress disorder, are
of great clinical concern (Aftyka, Rybojad, Rozalska-Walaszek, Rzoñca, & Humeniuk, 2014).
Problem Statement
It has been emphasized that posttraumatic stress disorder (PTSD) observed in parents
negatively affects the well-being of their baby (Shaw et al., 2014b). Mothers with greater
symptoms of PTSD are less sensitive and effective at structuring interaction with their infant
(Aftyka, Rybojad, Rozalska-Walaszek, Rzoñca, & Humeniuk, 2014). Bellini (2009) shares that
26 to 41% of mothers who experience the neonatal intensive care unit (NICU) report PTSD
symptoms compared with the one to six percent as reported from mothers who have healthy
deliveries. The symptoms are often found to persist six months or longer (Bellini, 2009).
Symptoms of PTSD that are present after six months are associated with an increased risk for an
insecure and disorganized mother-infant attachment relationship at 13 months of age (Aftyka,
Rybojad, Rozalska-Walaszek, Rzoñca, & Humeniuk, 2014). Lasiuk, Comeau, and Newburn
(2013) state the symptoms can last up to 18 months during which time the role of the parent is
inhibited. Without adequate performance of the parental role, the health and overall progress of
the at-risk infant will inevitability fail which contributes to prolonged illness of the infant,
failure-to-thrive, and elevated readmission rates (Lasiuk, Comeau, & Newburn, 2013).

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Furthermore, the illness and death of a loved one results in an annual loss of nearly $40
billion in wages and health recovery costs in the United States (Youngblut, Brooten, Cantwell,
del Moral, & Totapally, 2013). The loss is severe and the consequence can be relentless.
Parents who suffer from PTSD related to the illness and death of an infant or child are often codiagnosed with depression, cancer, type 2 diabetes, psychiatric instability, suicide, and addiction
(Youngblut, Brooten, Cantwell, del Moral, & Totapally, 2013). Such concerns financially and
emotionally tax families and social networks even further.
Purpose and Rationale
Infants who survive the NICU experience are at greater risk for negative developmental
outcomes, including cognitive delay and additional illnesses, which can serve as triggers to
remind parents of the feelings of helplessness and anxiety experienced during the NICU period
(Clottey and Dillard, 2013). Avoidance and attachment concerns have long-term consequences
for children of parents with PTSD including the emotional numbing from PTSD impacting the
quality of necessary bonding (Clottey and Dillard, 2013). Furthermore, parents of infants in the
NICU suffer from deterioration of their physical and mental health which further isolates them
and exacerbates feelings of hopelessness and inadequacy (Bellini, 2009).
There is concern based on observed parental behavior leading to a review of current
support. Explored modalities to minimize short and long term parental sequelae include early
identification of at-risk parents, effective screening, and promotion of individual trauma
counseling. It is established in the literature that PTSD rates in the NICU far surpass expectation,
potentially surpassing postpartum depression (PPD) rates themselves (Shaw et al., 2013).
Recommendations for screening all mothers, versus mothers considered at risk, are dominating
current literature (Shaw et al., 2014a).

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Background and Significance
In the United States, experts estimate that 7.7 million people develop PTSD yearly, often
experiencing onset of symptoms three to six months after a general trauma (Clottey and Dillard,
2013). Clottey and Dillard (2013) share that the prevalence rate of PTSD following childbirth, in
general, ranges from 1.7 to 5.6 %. In a clinical study of 130 NICU parents, 32% of parents had a
subclinical stress disorder within 72 hours of childbirth, which evolved into 15% diagnosed with
PTSD at day 30 from admission (Clottey and Dillard, 2013).
Posttraumatic Stress Disorder is often associated with service men and women who have
returned from war reporting psychological disturbances. However, the American Psychological
Association has modified the definition of PTSD to include any situation in which a person had
directly experienced, witnessed, or was confronted with an event that involved actual or
threatened death or serious injury (Bellini, 2009). Bellini (2009) reminds that extreme events
outside the range of usual human experiences elicit psychological responses such as feelings of
intense fear, helplessness, or horror. With the birth of a critically ill infant, images of perfection
are shattered and worries of death and loss replace the hopes of parents and effect bonding
between these parents and their babies (Hatters-Friedman et al., 2013).
Mothers who are unmarried, younger, or with fewer living children tend to express more
symptoms of PTSD (Hatters-Friedman et al., 2013). Personality traits considered problematic
(such as baseline anxiety, ineffective coping, or distrust), postpartum psychosis, or other serious
mental health illnesses also predispose a parent to PTSD (Hatters-Friedman et al., 2013).
Mothers with elevated postpartum depressive symptoms or those similar to PTSD are less
responsive to their infants’ needs and engage in fewer social behaviors towards their infants

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resulting in fewer mother-infant interactions (Garfield et al., 2015). Garfield et al. (2015) state
that mothers with elevated symptomology of PTSD have been linked with infant failure to thrive,
increased risk for developmental delay, and difficulty with social interactions. Consequences of
an early NICU encounter continue into adulthood with increased rates of hospitalization and
chronic illnesses; thus ease of parental emotional stress is not expected (Garfield et al., 2015).
Unfortunately, parental symptoms of PTSD place an infant at even greater risk for altered growth
and development compared to infants with non-symptomatic parents (Garfield et al., 2015).
Holditch-Davis et al. (2016) state that infants in the NICU who experience severe illness
produce parents with extreme anxiety scores versus those less ill. Within the authors’ study, the
parents who reflected extreme anxiety during their NICU stay were the parents who remained at
risk of significant psychological distress one year after discharge creating a less-positive
perception of the infant (Holditch-Davis et al., 2016). Perception of the infant and the infant’s
capability to fulfill social norms is imperative for some parents and their ability to bond. It could
be argued that a variety of factors alter parental perception including social milestones, cultural
expectation, and personal desire for the infant to fulfill familial norms (Holditch-Davis et al.,
2016).
Shaw, Bernard, Storfer-Isser, Rhine, and Horwitz (2013) unexpectedly found a positive
correlation between parental education and the symptomology of PTSD. The authors infer that
highly educated women are found to be experts with problem-focused coping and the failure of
this approach in the NICU, where very little is under their control, which sets them up for a
heighted sense of failure and negative self-appraisal (Shaw et al., 2013). Furthermore, Shaw et
al. (2013) question if an advanced education relates to a solid understanding of potential long
term developmental issues, therefore creating a more realistic sense of impairment.

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Timely recognition of symptoms is critical although easy to miss as parents are engrossed
in the newborn’s needs. The need for a NICU admission places considerable emotional,
psychological, and financial burden on parents, families, health care resources, and society
(Lasiuk, Comeau, & Newburn, 2013). Typically, costs are estimated that relate to inpatient and
follow-up care, but non-financial costs such as adverse psychological/emotional effects, family
disruption, relationship strain, alteration in self-esteem, and deterioration of physical and mental
health have not been considered (Lasiuk, Comeau, & Newburn, 2013).
Internal Evidence
Within a 32 bed NICU contained within a children’s hospital in the southwestern United
States, significant levels of suspected PTSD and mal-attachment are noted. Often, parents are
not involved with their infant’s care, do not visit or call for updates, and do not provide
breastmilk or care supplies for their baby. Parents are missing appointments for medical training
and care conferences with the medical team and refusing to accept the infant upon discharge.
Post-discharge, the facility’s NICU follow up team has noted that medical appointments are
being missed and readmission rates related to acquired community illnesses and failure to thrive
rates are higher in families who displayed signs of PTSD in the NICU (T. Bullock, personal
communication, June 15, 2016). Additionally, parents are verbalizing that they feel ill-prepared
to care for their infant, both emotionally and physically, at discharge (T. Binger, personal
communication, August 1, 2016).
This unit admits patients who have proved themselves critically ill in another NICU and
now require advanced levels of care. Therefore, these infants and families are already at a higher
risk for mal-attachment as well as both short and long-term chronic illness sequelae. Current
evidence suggests that an infant’s medical condition can become more complicated by a mal-

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attached parent (Hatters Friedman et al, 2013). As a parent’s emotional security becomes
compromised, they tend to distance themselves from the infant and refuse to engage in
techniques known to strengthen an infant’s ability to recover more rapidly. These techniques
include holding the infant skin-to-skin or pumping breast milk, both known to reduce the
incidence of compounding diagnoses, such as bronchopulmonary dysplasia or necrotizing
enterocolitis (Furman & Kennell, 2000).
With nearly 80% of parental samples positively screening for symptoms of depression,
anxiety, and trauma within the first few days of the NICU admission (Shaw et al., 2014a),
intervention and support must be considered. The data has led to a clinically relevant PICOT
question: In parents who have a newborn in the neonatal intensive care unit, would implementation
of individual trauma counseling rather than current clinical practice reduce the incidence of posttraumatic stress disorder at discharge.
Search Strategy
With the intention to answer the afore mentioned PICOT question, the databases used for
the literature review included Cumulative Index of Nursing and Allied Health Literature
(CINAHL), PubMed (Medline), and ERIC (ProQuest). The initial search strategy included the
keywords NICU, PTSD, posttraumatic stress disorder, and neonatal. Both American and
English spellings of keywords were used. Filters were set to published date within the last five
years. The Boolean connector “and” was utilized.
An initial CINAHL search rendered four resources using the search terms stress disorder
and NICU which was modified by changing the filter to only include publication dates within the
last five years. That modified search tapered the amount to two articles. In an attempt to foster a
larger yield, the acronym PTSD was substituted for the full term posttraumatic stress disorder

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which provided one additional article (now three). The acronym NICU was replaced with a
broad term, neonatal, offering the inquiry a final yield of six (Appendix A).
An initial PubMed search rendered thirty-one resources with the search terms NICU and
PTSD. However, with the filter adjusted to publications dates within the last five years, a final
yield of seventeen was accomplished (Appendix B).
Finally, an advanced search with ERIC using the search terms NICU AND PTSD
displayed no results (Appendix C). All search terms mentioned were entered into the search
field without gain.
Exclusion criteria included published dates prior to 2012, those written in non-English
language, or those that lacked scholarly scaffolding (editorial tone or low level of evidence).
Most of the studies were done in the United States, which limits the demographics, therefore
limiting study findings as the results may not necessarily translate to other populations. Of the
studies meeting inclusion criteria, several were discarded related to obvious flaws in
methodology, ethical considerations not being upheld, poor documentation, lack of disclosing
funding, or incomplete statistical analysis. After critical appraisal of remaining resources, ten
were selected for inclusion within this literature review. Those chosen soundly evaluated the
relationship between parental symptoms of stress and anxiety (PTSD) and the neonatal intensive
care unit (NICU) as well as various methods proven to minimize symptoms of mental health
insecurity in NICU parents.
Critical Appraisal and Synthesis
Upon completion, 10 studies were chosen for inclusion using rapid critical appraisal
(Appendix D). The final studies selected were mainly conducted in the United States, except for
one which was performed in Poland. This limits the study findings, as the results may not

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necessarily translate to other cultures or populations. Validity and reliability is universally
suggested as standardized instruments were utilized. The literature reviewed consisted of
samples derived from typical NICU populations; however, not all families agreed to participate.
This created a bias with the suggestion that parents who could be more at risk for PTSD refused
to participate in research or could not handle further emotional intrusion. Furthermore, the
studies demonstrated a moderate degree of homogeneity, as most were women versus men and
of childbearing age. The literature reviews (two) and meta-analysis (one) presented with a bias
tone and lacked validity, whereas the survey trials (six) and randomized controlled trial (one)
provided more depth and power but appeared assumptive. In addition, small sample sizes or
insufficient amounts of references were used (Appendix D). All studies failed to define a
conceptual framework to guide their work, forcing inference.
Sample sizes ranged from 21 to 249 participants, with very similar inclusion and
exclusion criteria. Every study was performed in a Neonatal Care Unit and one followed
families into the community. All of the studies were initiatives of NICUs affiliated with
academic institutions, such as Lucille Packard Children’s Hospital: Stanford. Study lengths
varied from three to 13 months.
The most common outcomes spoke of the need to screen parents for PTSD in eight out of
10 authors (Appendix D). Secondarily, the need to foster the bedside parental role was
consistently revealed in 60% of the studies (Appendix D). The use of bringing mental health
providers to the bedside was a recurring theme (Appendix D).
Conclusions of Literature Review
Research evidence overall supports the finding that screening all parents for PTSD is
crucial in the NICU (Appendix E). Hypotheses related to potentially more at risk parents (for

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example, more versus less educated) do not present consistently, therefore all variables and
demographics must be considered. Fostering the parental role in the NICU empowers the family,
thereby reducing symptoms of PTSD. A reduction in the severity of parental PTSD promotes the
overall health of the parent and the infant, short and long-term. Role empowerment can occur via
a variety of methods, including addressing the psychosocial well-being of the parent (Appendix
E).
Contribution of Theory
Moos & Schaefer's Conceptual Model for Understanding Life Crises and Transition
(Moos & Schaefer, 1984) (Appendix F) organizes the concept of life crisis and transition.
According to the framework, the environment and personal systems jointly affect the likelihood
and severity of life crisis and the ability to transition. The personal system includes
sociodemographic and personal resources such as cognitive ability, health status, motivation and
self-efficacy. Life crises or transitions reflect changes in ongoing personal factors such as illness
or environmental factors such as death. Clearly, this conceptual framework supports the ties
between parents of critically ill newborns in the NICU and posttraumatic stress disorder
highlighting the need to transition oneself through stress and environmental factors (i.e., preterm
birth) with the use of personal and environmental resources (i.e., nursing direction to develop
modified parental role).
Evidence Based Practice
The model chosen to guide the application of the synthesized evidence is the Model for
Evidence-Based Practice Change (Rosswurm & Larrabee, 1999). The tremendous advances in
clinical research and accessibility to research findings have created a shift in the paradigm from
traditional practice to an expectation of evidence-based care. This model illustrates the process

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for implementing research evidence into clinical practice in six specific steps (Appendix G).
These steps will guide the planning of implementation and evaluation of the project. Rosswurm
and Larrabee’s model is based on theoretical as well as research literature. Evidence-based
practice, research utilization, standard language, and change theory drive the framework. The
model is supportive of practice change derived from a combination of qualitative and
quantitative data, contextual evidence, and clinical expertise.
This model speaks to the idea of integration versus replacement. It’s important to hold
close to our past while modifying our future. Parents have been subjected to the NICU for
decades with hundreds of thousands of successful stories and illustration that supportive
techniques have minimized the effect of trauma. Research needs to practice modification of
workable systems based on evidence. This model allows for the emotional variance expected
with regards to human behavior.
Application of Evidence to Practice
Following the six steps of Rosswurm and Larrabee’s Model for Evidence-Based Practice
Change, a pilot program was implemented into the 32-bed neonatal intensive care unit. This
occurred after the careful investigation and approval of the facility’s Internal Review Board. The
parents with infants admitted to the unit who were deemed at risk via the facility social worker or
medical team were offered program inclusion. At discharge, the participants were approached to
participate in an analysis of efficacy via self-disclosing questionnaires. Minimal demographics
and data were obtained by personal interview, such as: infant’s age at admission, participant’s
self-disclosed support system, any history of mental health, and the severity of the infant’s
diagnosis. Stakeholders included the administration of the pediatric facility, the neonatal
medical director, the NICU’s manager, the NICU’s social worker, facility social work manager,

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and the facility’s psychiatric department. Additional stakeholders included the advanced practice
nursing student, the patients, the parents, and the nursing and medical team program champions.
Furthermore, community-based organizations who have historically followed NICU parents
outpatient, from a mental health standpoint, have been awarded grant money to offer postdischarge trauma counseling.
Upon admission, participants deemed at risk by the facility social worker or medical team
were offered counseling services by a licensed marriage and family therapist specially trained in
trauma. A consultation was ordered and the counselor approached the family members at the
infant’s bedside or by phone call one afternoon per week. Over the course of their infant’s stay,
the families who chose to participate in the parental psychosocial support program were closely
monitored and supported. At discharge, a neonatal anxiety scoring tool (PSS: NICU) (Appendix
H) and a parent satisfaction scoring tool (NIPS) (Appendix I) were utilized to compare the scores
of cohorts of cumulative time counseled. Counseling not only supported the trauma and
grief/loss needs of the participant, but also empowered the parent role by encouraging the
learning of how to hold their critically ill infant skin-to-skin despite necessary respiratory
support, diaper and bathe their infant despite central lines and equipment, and make choices for
their baby’s care. Participants were also encouraged to scrapbook, journal their infant’s
milestones for the national Beads of Courage program (Beads of Courage, 2017), participate in
non-nutritive nuzzling, and attend weekly care conferences with the infant’s multidisciplinary
team. Extensive diagnoses education was assured by program champions who utilized the
facility’s patient medical library. Effective discharge expectations and teaching were maintained
by nursing and case management throughout the NICU stay. All disciplines of the NICU
exhausted efforts to update and include families in care treatments or therapies. The

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participants’ needs and progress were monitored on a weekly basis, including active sources of
dissatisfaction and barriers to developing their optimal parental role as modified by the NICU
course.
Data Collection and Analysis/Outcomes
As per facility permission, the first 20 participants (n=20) of the pilot counseling program
were approached at their infant’s bedside on day of discharge. They were made aware of the
trial nature of the counseling they participated in and asked to, at their leisure, engage in a review
process of how they felt they benefitted from the counselor, if at all, and what service
modifications could be made to better serve facility families moving forward. They were asked
to complete 5-point Likert scale questionnaires, the NIPS and PSS:NICU, each consuming
approximately 10 minutes of their time. The participants were made aware that no chart review
would occur, no HIPPA data would be collected or shared, and that their answers to questions
and any shared comments would remain anonymous. The 20 referrals were shared with the
investigator via the facility counselor following the family once discharge was pending within
the next 48 hours. An informal process of program review and suggestions occurred for
approximately 15 minutes. The family was left with the facility approved NIPS and PSS:NICU
questionnaires for another 15 minutes at which time the investigator returned to answer questions
and gather the unidentified data. The questionnaires were labeled at that time with a participant
ID of one thru 20. The unidentified data was transferred via investigator into a password
protected SPSS data spreadsheet and discarded in the facility’s privacy protected receptacles.
Upon analysis, a mean facility admission occurred at or on 19 days of patient life,
although 50% of the admissions occurred on the first day of life. Seventy percent of participants
referred to family as a source of support rather than nurses or faith and 30% reported a mental

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health history. Sixty-five percent of participants stated an outstanding relationship with the
facility in which their baby was born. Fifty-five percent of participants claimed their infant will
suffer from severe long-term needs or there is an expectation of death (Appendix J). Fifty percent
(n=10) of participants self-reported receiving five to seven hours of counseling, with the other
fifty percent creating an equal distribution curve, maintaining a well-represented population
sample.
Overall, 85% of parents stated they were satisfied with the care their infant received
(Appendix K) and 95% would recommend the facility to another parent (Appendix L). Seventyfive percent of participants stated they were unsure who to trust with their infant’s care
(Appendix M). The care satisfaction scores revealed a positive correlation between greater
exposure to counseling and higher satisfaction scores (Appendix N). Two groups were created
for hours counseled: those participants who were counseled up to four hours and those who were
counseled five or more. A null hypothesis stated that both groups would demonstrate the same
satisfaction score. An alternative hypothesis stated that they would not have similar satisfaction
scores, with an alpha (p-value) greater than 0.05. The null hypothesis was rejected (p= 0.07)
(Appendix O).
However, there was not a reduction in overall anxiety scores related to hours spent
counseled. Amongst the PSS: NICU anxiety scoring tool questions, a statistical shift related to
counseling was not consistently seen. Despite the number of hours counseled, parents
persistently expressed their feelings of helplessness (Appendix P). Forty-five percent of
participants perceived errors had been made in their infant’s care (Appendix Q). High selfreported anxiety scores persisted at 65 to 75% of participants despite hours counseled (Appendix
R).

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The families shared program feedback with the investigator during the interview process.
Many trends, despite power, were noted overall. The concerns expressed about a participant’s
NICU stay included feeling intentionally disempowered by the nursing staff, not feeling
supported to breastfeed or hold their infant when they chose, personal comments were overheard
about their baby (size, smells, outcomes, abilities), and primary nursing not being adhered to
related to staffing needs. Additionally, participants stated inconsistencies with what was being
communicated to them regarding their infant’s care methods, diagnosis, possible outcomes, need
for labs and diagnostics, and what appeared as a lack of communication between the specialists
and neonatologist. Participants shared concern that logistical supports were not well met, stating
that accommodations posed a challenge, multiples were separated, their infant’s room kept
changing, and the discharge felt hurried. They also mentioned the inaccessibility of the infant for
family members, having to wait in lobby for unit closures, and not being updated by the infant’s
doctor often enough.
Furthermore, overstimulation was often expressed by the participants, commenting on
bright and noisy monitors and pumps, loud personal conversations by the staff (lack of
professional behavior, political in nature), the large number of nurses and doctors they met, and
lack of sensitivity and reverence for the environment (loud, inappropriate, short with family
when answering a question). Lastly, perceived lack of transparency was highlighted. Participants
expressed concern over situations such as being called into a care conference without being told
the nature of the conversation and a lack of representation from all facets of care during team
decision making processes.
However, participants stated that, despite errors (reported occurrence rate of 45%), team
transparency was appreciated and apologies to the parents were made. Attempts to correct the

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error or make the situation right eased participant concerns. Participants reported trusting the
community reputation of the facility and that the NICU and the medical staff lived up to their
expectations as staff was open to questions and teaching the family how to care for their infant.
Implications
At discharge, the participants participated in an informal verbal interview that
investigated satisfaction and stress. They completed two screening tools: 1) to measure levels of
PTSD and associated anxiety (PSS: NICU) and 2) to measure parent satisfaction with medical
care in the NICU (NIPS). It was predicted that fostering attachment by supporting the
psychosocial needs of the parents would minimize PTSD symptomology and, in turn, offer
improved neonatal health outcomes, shortened lengths-of-stay, and efficient discharge planning.
It could be stated that financial savings would be favored by private insurance companies, state
and federally funded low-income insurance programs (such as AHCCCS), and this facility that
operates under budget constraints related to noninsured or underinsured patient populations.
Furthermore, facilities such as this are driven by patient satisfaction surveys as well as fostering
trusting bonds in a disputative culture. It is often noted that parents who feel engaged and
empowered tend to cooperate with their infant’s care team and adhere to timely decision making
regarding the infant’s care.
Evidence supports the idea that role fostering typically minimizes social strain at
discharge. The parent finds it easier to resume previous social contributions and relationships.
Furthermore, parents who suffer less stress in the NICU related to role promotion and emotional
support report a reduction in physical ailments and mental health compromise (Aftyka, Rybojad,
Rozalska-Walaszek, Rzoñca, & Humeniuk, 2014). Additionally, with the implementation of a
successful program, data shows that infants are less likely to succumb to developmental delay

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associated with lack of environmental stimuli or lack of parental engagement with follow up
therapy or medical plans (Hatters-Friedman et al., 2013). This potentially lessens the burden on
state neonatal intensive care follow up programs and school districts.
However, with this analysis, demonstration of statistical significance was not achieved.
Inference to the general population cannot be stated. This could be related to the small sample
size (n=20). Facility satisfaction scores were reflective of emotional support hours spent but
anxiety scores remained unchanged. This could be attributed to the severity of illness seen in
this NICU where, tragically, more than half of parents expect their infants to sustain severe long
term needs or die (Appendix J). Thirty percent of this sample stated baseline mental health
concerns (Appendix J). Therefore, it’s possible that generalized evidence-based literature cannot
be inferred to a NICU where parents see greater levels of stress and anxiety or have a higher
predominance of mental health concerns at baseline.
Plan for Sustainability
This analysis consisted of reviewing the efficacy of a trial counseling program for the
NICU families in a Southwestern pediatric facility. Per positive feedback from the participants,
nursing staff, and overall improved success demonstrated by the NICU families, the program
will be maintained in the NICU. Long term funding has been approved through the facility’s
Department of Psychiatry. It has also been implemented into the Fetal Care Clinic where families
will meet with the counselor prior to delivery and have pre-trauma assessments in order to
improve methods of service.
While reviewing the program with participants, it was determined that accessibility to the
counselor was a concern. She was only in the NICU one afternoon per week and the participants
felt this was not a sufficient amount of time. They did not have any contact method for her and

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could not schedule appointments. The random unit sweeps would not always catch all
participants requiring assistance. Per participant recommendation, a text or page option would
have served them well. Nurses stated they would be agreeable to creating referrals for families
they feel are at risk (confirmed scope of practice) and would also be willing to use the facility’s
real-time paging service (Vocera) to request mental health services to the infant’s bedside.
Participants verbalized a desire to engage in technical methods of support, such as utilizing the
facility’s app-based program for patient information. It was recommended that an app-based
mental health resource be implemented to the patient portal including easy to read information
on posttraumatic stress disorder in the NICU and ways to care for themselves as parents.
Participants suggested a group-based support method that would allow for personal connection
and support and relationship building for long-term resource development. With 70% of
participants stating their family is their main source of support, additional methods to support
family involvement should be investigated.
Participants offered positive feedback on methods currently being utilized by the facility
to support their mental health and ease the stress of their NICU journey including infant video
cameras, shift-to-shift text-option care satisfaction surveys (green thumbs up versus red thumbs
down with clinical supervisor follow-up), medical director and unit manager rounds once a week
to address concerns and satisfaction, primary nursing, and weekly multidisciplinary rounds
inclusive of families.
With the preliminary data, input from the participants and program staffers, as well as
innovative facility goals, program reanalysis should be considered once the modifications have
been made. For research power and statistical significance, a larger sample size should be
utilized. Alternative methods to assess a participant’s mental health baseline and supportive care

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needs should be sought. Recommendations for further research would include ways to minimize
overstimulation in the NICU, education related to staff biases and supportive language, parental
sleep rooms conjoined with NICU patients, and skin-to-skin holding involving all family
members.
Dissemination of Project Findings
Per facility request, analysis findings will be presented to the Family Advisory
Committee. It is expected that the NICU medical director, NICU manager, facility Chief
Nursing Officer, NICU Developmental Specialist, NICU social worker, NICU Counselor, and
Nurse Champions for the trial program will be present for the presentation. Data and suggestions
will be shared with the counselor, privately, prior to the unit presentation to allow for program
remodeling and feedback in a private setting.
The project poster will be displayed at the facility’s Research Day amongst other research
projects that have been completed by medical staff for the current year. The poster will then be
displayed in a staff-visible location within the NICU and an educational email rollout will occur
via the facility’s educator. Application to topic-related conferences will occur over the following
one to two years with a goal to share the importance of minimizing parental emotional strain in
the NICU and possibly reducing the rates of PTSD, nationally. The disseminatable data will be
presented in poster and/or power point form. Submission for publication will occur with highly
esteemed journals such as American Academy of Pediatrics, American Journal of Nursing, or
Journal of American Academy of Child & Adolescent Psychiatry.

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References
Aftyka, A., Rybojad, B., Rozalska-Walaszek, I., Rzoñca, P., & Humeniuk, E. (2014). Posttraumatic stress disorder in parents of children hospitalized in the neonatal intensive care
unit (NICU): medical and demographic risk factors. Psychiatria Danubina, 26(4), 0-352.
PMID: 25377369. Retrieved from www.hdbp.org/psychiatria_danubina/about.html
Beads of Courage (2017). Retrieved from http://beadsofcourage.org/
Bellini, S. (2009). NICU families and PTSD: Handle with care. Nursing for women’s
health, 13(5), 422-426. Doi: 10.1111/j.1751-486X.2009.01461.x
Clottey, M., & Dillard, D. M. (2013). Post-traumatic Stress Disorder and Neonatal Intensive
Care. International Journal of Childbirth Education, 28(3). ISSN: 0887-8645. Retrieved
from icea.org/about/icea-journal/.
Furman, L., & Kennell, J. (2000). Breastmilk and skin‐to‐skin kangaroo care for premature
infants. Avoiding bonding failure. Acta Paediatrica, 89(11), 1280-1283.
Garfield, L., Holditch-Davis, D., Carter, C. S., McFarlin, B. L., Schwertz, D., Seng, J. S., &
White-Traut, R. (2015). Risk factors for Postpartum Depressive Symptoms in LowIncome Women with Very Low Birth Weight Infants. Advances in neonatal care: official
journal of the National Association of Neonatal Nurses, 15(1), E3.
Doi: 10.1097/ANC.0000000000000131

NICU PTSD

22

Hatters Friedman, S., Kessler, A., Nagle Yang, S., Parsons, S., Friedman, H., & Martin, R. J.
(2013). Delivering perinatal psychiatric services in the neonatal intensive care unit. Acta
Paediatrica, 102(9), e392-e397. Doi: 10.1111/apa.12323
Holditch-Davis, D., Santos, H., Levy, J., White-Traut, J., O’Shea, T. M., Geraldo, V., & David,
R. (2015). Patterns of psychological distress in mothers of preterm infants. Infant
Behavior and Development, 41, 154-163. Doi: 10.1177/0884217503252035
Lasiuk, G. C., Comeau, T., & Newburn-Cook, C. (2013). Unexpected: an interpretive description
of parental traumas’ associated with preterm birth. BMC pregnancy and childbirth, 13(1),
S13. Doi: 10/1186/1478-2393-13-S1-S13.
Moos, R. H., & Schaefer, J. A. (1984). The crisis of physical illness. In Coping with physical
illness (pp. 3-25). Springer, Boston, MA.
Rosswurm, M. A., & Larrabee, J. H. (1999). A model for change to evidence‐based
practice. Image: The Journal of Nursing Scholarship, 31(4), 317-322.
Shaw, R. J., Bernard, R. S., Storfer-Isser, A., Rhine, W., & Horwitz, S. M. (2013). Parental
coping in the neonatal intensive care unit. Journal of clinical psychology in medical
settings, 20(2), 135-142. Doi; 10.1007/s10880-012-9328-x
Shaw, R. J., Lilo, E. A., Storfer-Isser, A., Ball, M. B., Proud, M. S., Vierhaus, N. S., &
Horwitz, S. M. (2014). Screening for symptoms of postpartum traumatic stress in a

NICU PTSD

23

sample of mothers with preterm infants. Issues in mental health nursing, 35(3), 198-207.
Doi: 10.3109/01612840.2013.853332
Shaw, R. J., St John, N., Lilo, E., Jo, B., Benitz, W., Stevenson, D. K., & Horwitz, S. M. (2014).
Prevention of traumatic stress in mothers of preterms: 6-month outcomes.
Pediatrics, 134(2), e481-e488. Doi: 10.1542/peds.2014-0529
Youngblut, J. M., Brooten, D., Cantwell, G. P., del Moral, T., & Totapally, B. (2013). Parent
health and functioning 13 months after infant or child NICU/PICU death.
Pediatrics, 132(5), e1295-e1301. Doi: 10.1542/peds.2013-1194

NICU PTSD

24

Appendix A
Search Strategy 1: EBSCOhost CINAHL plus with full text

Appendix B
Search Strategy 2: PubMed

NICU PTSD

25

Appendix C
Search Strategy 3: ERIC (ProQuest)

NICU PTSD

26

Appendix D
Evaluation Table
Citation

Aftyka
(2014)
Posttraumatic
stress
disorder in
parents of
children
hospitalize
d in the
neonatal
intensive
care unit
(NICU):
medical
and
demograp
hic risk
factors
Funding:
agency
Conflict:
none
Country:
Poland

Theory/
CF
LCT

Design/
Method

Sample/
Setting

Design:

N =1

DST/
Survey

n=66

Purpose:
To
determine
if children
of parents
diagnosed
with
PTSD are
at high
risk?

Demograph
ics:
39 mothers
and
27 fathers of
42 NICU
infants
ranging in
age from 1
to 16
months
Setting:
NICU/
hospital
Inclusions:
ability to
read and
write Polish,
infant in the
NICU

Major
Variables
&
Definitions
IV:
NICU
admission
DV:
Rate of
PTSD in
parents

M/I

Impact of
Event
ScaleRevised
(IES-R)
Perceived
Stress
Scale
(PSS-10)

Data
Analysis
S/10
SPSS 20
MWU

Findings/
Results
No delta
between
mothers
and
fathers
and rates
of PTSD
in the
NICU
Both
elevated
Consider
causes
for PTSD
in the
NICU

Level/
QE
Decision
QE: 3
Strengths:
Multiple
screening
tools used
Weakness:
-small
sample size
-not a
random
selection
Decision:
Yes, screen
parents for
PTSD;
implement
education or
psychoprophylaxis

Exclusions:
Lack of
consent, not
legal
guardian of
NICU infant

Key: CF – Conceptual Framework; Decision- Decision for practice/ application to practice; DST — Descriptive;
DV-dependent variable; IV- independent variable; LCT — Conceptual Model for Understanding Life Crises and
Transition; MWU – Mann-Whitney U-test; N-number of studies; n- number of participants; M/I - Measurement
and Instrumentation; NICU -neonatal intensive care unit; PTSD-Post-Traumatic Stress Disorder; QE – Quality of
Evidence; S/10 – STATISTICA 10 (Statsoft).

NICU PTSD

27

Evaluation Table
Citation

Theory/
CF

Design/
Method

Sample/
Setting

Bellini
(2009)

LCT

Design:
Literature
Review

Setting:
University
of
Connecticut,
School of
Nursing

NICU
Families
and PTSD
Handle with
Care
Funding:
Scholarly
(University
of
Connecticut,
School of
Nursing)
Conflict:
none

Purpose:
Determine
if there is
a need for
increased
awareness
related to
parental
PTSD in
the NICU

Major
Variables
&
Definitions
IV:
Rate of
PTSD
DV:
Increased
awareness
of parental
distress and
nursing
27idwest27
ion for
NICU
parents
with PTSD

M/I

Data
Analysis

Not
measurable

Review of
RCT of
N=103
revealed
symptoms
of PTSD
lessened
over time
(3 mo)
with intervention

Findings/
Results
Increased
awareness
of PTSD
can
alleviate
symptoms

Country:
USA

Level/
QE
Decision
QE: 2
Strengths:
Thorough
descriptors
such as
background
on PTSD
Weakness:
Minimal
articles
used or
reviewed;
lacked
synthesis;
sources
used lacked
large
samples
Decision:
Yes,
frontline
nurses can
minimize
parental
PTSD with
active
listening
and
emotion
support

Key: LCT — Conceptual Model for Understanding Life Crises and Transition; Decision — Decision for practice/
application to practice; DV-dependent variable; IV- independent variable; LCT — Conceptual Model for
Understanding Life Crises and Transition; M/I — Measurement/Instrumentation; N-number of studies; n- number
of participants; NICU -neonatal intensive care unit; PTSD-Post-Traumatic Stress Disorder; QE — Quality of
Evidence; SR – Systematic Review; USA – United States of America.

NICU PTSD

28

Evaluation Table
Citation

Clottey
(2013)
Posttraumatic
stress
Disorder
and
Neonatal
Intensive
Care
Funding:
Scholarly
Conflict:
none
Country:
USA

Theory
/ CF
LCT

Design/
Method

Sample/
Setting

Design:

Setting:

Literature
Review

Walden
University,
Tennessee

Purpose
To address
the paucity
of
knowledge
related to
prevalence,
etiology,
and PTSD
symptoms

Major
Variables
&
Definitions
IV:
Symptoms
of PTSD
DV:
Proper
training for
NICU
healthcare
providers

M/I

Not
measurable
Davies
(2008)
source
mentions
use of
PTSDQ
Suggests
use of IES;
PSS: NICU

Data
Analysis
Review
of RCT
(n=211)
reveals
3.8%
PTSD
rates
with
another
21% with
symptom

Findings/
Results
PTSD is
underrecognized
and underreported

Level/
QE
Decision
QE: 3
Strengths:
Thorough
epidemiology
and spectrum
of parental
PTSD detailed
Weakness:
Minimal
studies
reviewed
Decision:
Yes, lessen
trauma for
parents in the
NICU using
empowerment

Key: CF – Conceptual Framework; Decision – Decision for practice/ application to practice; DV-dependent
variable; IES – Impact of Event Scale; IV- independent variable; LCT — Conceptual Model for Understanding Life
Crises and Transition; N-number of studies; n- number of participants; M/I — Measurement/Instrumentation NICU
-neonatal intensive care unit; PTSD-Post-Traumatic Stress Disorder; PTSDQ — Posttraumatic Stress Disorder
Questionnaire; PSS: NICU – Parental Stressor Scale: NICU; QE — Quality of Evidence

NICU PTSD

29

Evaluation Table
Citation

Hatters
Friedman
(2013)
Delivering
perinatal
psychiatric
services in
the
neonatal
intensive
care unit
Funding:
scholarly
Conflict:
none
Country:
USA

Theory
/
CF

Design/
Method

LCT

Design:
Metaanalysis
Purpose:
mothers
who would
likely
benefit
from onsite short
term
psychiatric
services in
NICU

Sample/ Setting

N =1
n=150
Setting:
NICU/Hospitals
of Cleveland
Demographics:
Two-year
period, 150
consecutive
referrals to the
NICU
psychiatrist,
included 6
percent of
mothers of
admitted
infants. Mean
age 27, typically
single, father
not usually
known, and
most employed.
Setting:
NICU/
Hospital
Inclusions:
referral for
necessary
psychotherapy

Major
Variables &
Definitions

M/I

IV:

REDCap

Psychiatrist
present in
NICU for
readily
available
therapy
DV:
Rate of
PTSD in
parents as
with mental
health
symptoms,
improved
parental
functioning,
fostering a
better
parent-child
relationship
in this highrisk group,
and
improving
the treatment
team’s
morale

Data
Analysis
SPSS
MannWhitney
60%
Unable to
cope with
infant’s
illness
43% signs
visible
depression
and anxiety
19%
relationship
issues

Findings/
Results
Both at 1
month
and 2
years,
mothers
of
VLBW
have
more
psychoLogical
distress
than
mothers
of term
infants

12% on
psychotropic
meds while
infant in the
NICU
40%
depressed
31% anxiety
disorder
5% PTSD
75% accept
treatment
56% sought
offered
therapy

Key: CF – Conceptual Framework; Decision – Decision for practice/ application to practice; DV-dependent
variable; IV- independent variable; LCT — Conceptual Model for Understanding Life Crises and Transition; M/I
— Measurement/Instrumentation; N-number of studies; n- number of participants; NICU -neonatal intensive care
unit; PTSD-Post-Traumatic Stress Disorder; REDCap – Research Electronic Data Capture QE — Quality of
Evidence.

Level/
QE
Decision
QE: 3
Strengths:
Broad
demographics
Weakness:
Internal
data
collection
only/retrospective
Decision:
Yes, having
a
psychiatrist
in the
NICU can
diagnose
parental
disorders
earlier,
facilitate
access to
care, and
better
prepare
staff

NICU PTSD

30

Evaluation Table
Citation

Theory/
CF

Design/
Method

Sample/
Setting

Garfield
(2015)

LCT

Design:

N =2
n=113
Setting:
Tertiary
care
NICUs in
the
Midwest
Inclusion
Mothers
of VLBW
infants,
English
speaking,
without
mental
illness,
clinically
stable
infants, no
congenital
neurologic
al
problems.
Exclusion
Mothers
younger
than 18,
ongoing
critical
illness
(HIV),
mental
health
diagnosis,
or
ventilated
mothers.

Risk
factors for
postpartum
depressive
symptoms
in lowincome
women
with very
low birth
weight
infants
Funding:
Scholarly
Conflict:
none
Country
USA

Descriptive
crosssectional
study that
was part of
a larger
RCT
Purpose:
Determine
if elevated
depressive
symptoms
are linked
to infants
with failure
to thrive, at
higher risk
or
developme
ntal delays,
or have
difficulty
with social
interactions
.

Major
Variables
&
Definitions
IV:

M/I

Data
Analysis

Findings/
Results

STAI

Mothers of
VLBW
infants

PPQ

ANOVA
t-tests

DV:

CESD

Higher
levels of
PTSD
symptoms
than
mothers of
infants
born
greater than
34 weeks
gestation

NBRS

Urban,
Low
income
mothers
of
VLBW
infants
are at
higher
risk of
PTSD
and
therefore
higher
rates of
infant
illness,
parental
stress,
and readmits

PSS:NICU

30% with
PTSD
symptoms
No
difference
in
symptoms
at 1 month
or 3 month
enroll
Worsened
symptoms
with father
living
outside of
home
Lowincome
mothers
experience
higher
levels of
symptoms

Level/
QE
Decision
QE: 3
Strengths:
Numerous
measurement
tools utilized
Mention of
IRB approval
Weakness:
Small sample
size, urban
mothers only,
secondary
design
limited by
primary study
design and
data
Decision:
Yes, screen
mothers for
factors that
predispose
them to
PTSD (lowincome,
advanced
maternal age,
lack of father
involvement,
and state
anxiety) if
institutional
resources
limit
screening and
care for all
mothers.

Key: CESD — Center for Epidemiological Studies Depression Scale; CF – Conceptual Framework; Decision –
Decision for practice/ application to practice; DV-dependent variable; IV- independent variable; LCT —
Conceptual Model for Understanding Life Crises and Transition; M/I — Measurement/Instrumentation; N-number
of studies; n- number of participants; NBRS – Neurobiological Risk Score; NICU -neonatal intensive care unit:
NICU – Parental Stressor Scale: NICU; PPQ — Perinatal Post-traumatic Stress Disorder Questionnaire; PTSDPost-Traumatic Stress Disorder; QE — Quality of Evidence; STAI — State-Trait Anxiety Inventory; VLBW- very
low birth weight.

NICU PTSD

31

Evaluation Table
Citation

HolditchDavis
(2015)
Patterns of
psychologi
cal distress
in mothers
of preterm
infants.
Funding:
Scholarly
Conflict:
none
Country:
USA

Theory/
CF

Design/
Method

Sample/
Setting

Major
Variables &
Definitions

M/I

LCT

Design
RCT

N =2

IV:
Mothers
stress class
membership
at enrollment
(stress=
category)

CESD

DV:

PPQ

Maternal and
infant
characteristic
at enrollment
(relationship
category)

PSS:
PBC

Purpose:
To
determine
if mothers
with high
depressive
scale
indicators
remain at
risk one
year after
their
NICU stay

n=232
Demographics:
Race, first
time mother,
age,
married, PA,
data on
infant
Setting:
4NICUsTwo
southwest
region and
two
Midwest
regions
Inclusions:
mothers of
preterm
infants less
than 1750
grams, no
longer
critically ill
Exclusions:
Mothers
who did not
have
custody,
infants with
substance or
neuro issues

The
Worry
Index
VCS

PSS:
NICU

Data
Analysis

Findings/
Results

Level/QE

Chi Square
test

Identified
subgroups
of mothers
at risk for
PTSD

QE: 4

F test

Mothers
need to be
assessed
for patterns
of distress,
not just
based on
characteristics

Decision

Strengths:
Large sample
size, detailed
maternal and
infant
characteristic
Weaknesses:
Class predetermined;
did not
ascertain if
mental illness
prior to NICU
admission;
ethnic
limitations;
limit case
study time
Decision:
Yes, offers
insight into
specific subgroups that
are at higher
risk for PTSD
requiring
intervention
to ameliorate
distress and
promote
parenting
response

Key: CESD — Center for Epidemiological Studies Depression Scale; CF – Conceptual Framework; Decision –
Decision for practice/ application to practice; DV-dependent variable; IV- independent variable; LCT —
Conceptual Model for Understanding Life Crises and Transition; M/I — Measurement/Instrumentation; N-number
of studies; n- number of participants; NICU -neonatal intensive care unit; PA – Public Assistance; PPQ — The
perinatal post-traumatic stress symptom questionnaire; PSS: NICU – Parental Stressor Scale, NICU; PSS:PBC —
Parental stress scale: Prematurely born child; PTSD-Post-Traumatic Stress Disorder; QE — Quality of Evidence;
VCS — Vulnerable Child Scale.

NICU PTSD

32

Evaluation Table
Citation

Theory/
CF

Design/
Method

Sample/
Setting

Lasiuk
(2013)

LCT

Design:

N =1

Major
Variables
&
Definitions
IV:

Descriptive/
survey

n=21

PTB

Unexpected:
an
interpretive
description
of parental
traumas’
associate
with preterm
birth
Funding:
Scholarly/
Grant via
Alberta
Heritage
Fund
Conflict:
None vs
BioMed
Central Ltd
Country:
Canada

Purpose:
Whether
healthcare
providers
need further
education
related to the
care and
referrals
needed for
mothers of
PTB.

Setting:
large
western
Canadian
city
Inclusions:
Caretaker of
preterm
infant born
between
2003-2009;
speaks
English,
provide
consent

DV:
Trauma
related to
prolonged
uncertainty

M/I

Data
Analysis

Findings/
Results

No tool
used

No data/
Parental
quotes in
text

Parental
trauma is
less
related to
infant
characteristics
than it is
to loss of
parental
role.

Phone
interview
No other
methods
or
analysis
shared

Qualitative
study

Role
robbery
includes
holding,
helping
care for,
protecting
from pain,
and
sharing of
the baby
with
family.

Level/
QE
Decision
QE: 2
Strengths:
Detailed
stories of
grief and
shock, with
parental
quotes
highlighting
the severity
of the need
for
intervention
Weakness:
Small
sample size,
no use of
standardized
measuring
tool; no true
data
presented
Decision:
Yes, to
promote
breastfeeding,
kangaroo
care, family
centered
practices,
constructing
parent role
with
tangible
activities
that promote
sense of
agency.

Key: CF – Conceptual Framework; Decision – Decision for practice/application to practice; DV-dependent variable;
IV- independent variable; LCT — Conceptual Model for Understanding Life Crises and Transition; M/I —
Measurement/Instrumentation; N-number of studies; n- number of participants; NICU -neonatal intensive care unit;
PTB – Preterm Birth; PTSD-Post-Traumatic Stress Disorder; QE — Quality of Evidence.

NICU PTSD

33

Evaluation Table
Citation

Theory/
CF

Design/
Method

Sample/ Setting

Shaw
(2013)

LCT

Design
Descriptive
/Survey

N =1

Parental
Coping in
the
Neonatal
Intensive
Care Unit.
Funding:
Scholarly
Conflict:
none
Country:
USA

Purpose:
Whether
DYS
parental
coping
methods
effect rates
of PTSD

n=56
Demographics:
Setting:
Lucille Packard
NICU/Stanford
CA
Inclusions:
age 18 years or
older, speak
English or
Spanish, infant
was expected to
survive, weight
over 1,000gram
and greater than
37 weeks,
transferred to or
born at LPCH
within 72 hours

Major
Variables
&
Definitions
IV:
DYS
coping
DV:
Parental
PTSD

M/I

Data
Analysis

Findings/
Results

The Brief
COPE

Chi square

18%
mothers
with ASD

SASRQ
Davidson
Trauma
Scale

Two
sample Ttests,
Pearson
correlation
ANOVA
SAS
version 9.2

30% met
criteria for
PTSD at 1
month of
infant’s
birth
Baseline
DYS
coping =
elevated
risk for
PTSD
Maternal
education
=
increased
risk for
PTSD
(17%)

Level/
QE
Decision
QE: 3
Strengths:
Numerous
screening
tools utilized,
broad data on
subject
characteristic
and coping
styles
Weakness:
Sample
size/lacks
power,
reliance on
self-report,
Brief COPE
tool has not
been
validated in
NICU
Decision:
Yes, support
cognitive
behavioral
interventions
that target
maladaption
and consider
all risk
factors for
therapy (as
positive
relationship
between
educational
years and
PTSD not
foreseen).

Key: ASD- Acute Stress Disorder; CF – Conceptual Framework; Decision – Decision for practice/application to
practice; DV-dependent variable; DYS – Dysfunctional; IV- independent variable; LCT — Conceptual Model for
Understanding Life Crises and Transition; LPCH – Lucille Packard Children’s Hospital; M/I —
Measurement/Instrumentation; N-number of studies; n- number of participants; NICU -neonatal intensive care unit;
PTSD-Post-Traumatic Stress Disorder: SASRQ — Stanford Acute Stress Reaction Questionnaire; QE — Quality of
Evidence.

NICU PTSD

34

Evaluation Table
Citation

Theory/
CF

Design/
Method

Sample/
Setting

Shaw
(2014)

LCT

Design
Descriptive/
Survey

Screening
for
symptoms
of
postpartum
traumatic
stress in a
sample of
mothers
with
preterm
infants.
Funding:
Scholarly
Conflict:
none
Country:
USA

Purpose
To confirm
the
suggestion
that mothers
of infants in
the NICU
experience
considerable
psychologic
al distress
related to
their birth
and NICU
experience.

M/I

Data
Analysis

Findings/
Results

N =1

Major
Variables
&
Definitions
IV:

BDI-II

n=135

PPD

BAI

Twosample ttest

Demograp
hics:
Race, first
time
mother,
age,
married,
PA, data on
infant

DV:

SASRQ

PPTS

IHSI

77%
screened
positive
for risk
for PTSD
or ASD
on at least
one of the
three
screens
given

REDCap

Wilcoxon
rank-sum
test
Chisquare test
Fishers
exact test

Setting:
NICU/
Stanford
CA

ANOVA

Inclusions:
English or
Spanish
speaking,
infant born
between 26
and 34
weeks,
weighing
over 1000
grams,
born or
transferred
to LPCH
within 72
hours

SAS
version
9.2

KruskalWallis test

47%
positive
for
anxiety
36%
positive
for
depression

Level/
QE
Decision
QE: 3
Strengths:
inclusion of
more than
one
language,
research
held at
leading
neonatal
facility, use
of
numerous
screening
tools.
Weakness:
Small
sample
size/limited
power for
analysis;
few single
mothers,
only
screened at
1 week
postadmission.
Decision:
Yes,
consider
PTSD as
prevalent
as PPD,
with
potentially
longer
sequelae
and adverse
infant
outcomes.
Maternal
Demographics do
no offer
direction as

NICU PTSD

35
to whom
shall be
screened
and treated;
consider
universal
treatment.

Key: ASD- Acute Stress Disorder; BAI — The Beck Anxiety Inventory; BDI-II — Beck Depression Inventory –
Second Edition; CF – Conceptual Framework; Decision – Decision for practice/application to practice; DVdependent variable; IHSI – Illness Health Severity Index; IV- independent variable; LCT — Conceptual Model for
Understanding Life Crises and Transition; LPCH – Lucille Packard Children’s Hospital; M/I —
Measurement/Instrumentation; N-number of studies; n- number of participants; NICU -neonatal intensive care unit;
PA – Public Assistance; PPD – Postpartum Depression; PPTS – Postpartum Traumatic Stress; PTSD — PostTraumatic Stress Disorder; REDCap – Research Electronic Data Capture; SASRQ -Standard Acute Stress Reaction
Questionnaire; QE — Quality of Evidence.

NICU PTSD

36

Evaluation Table
Citation

Youngblut
(2013)
Parent
health and
Functioning
13 months
After Infant
or Child
NICU/PICU
death
Funding:
Scholarly
Conflict:
none
Country:
USA

Theory/
CF
LCT

Design/
Method
Design
Descriptive
/Survey
Purpose
Does the
death of a
child affect
health and
functioning
long-term
(greater
than 1 year
post
death)?

Sample/
Setting
N =1
n=249
Demographics:
Age, race,
education,
partnered,
income,
gender,
length of
NICU stay
Setting:
Florida
Community
Inclusions:
English or
Spanish,
deceased
neonate or
child less
than 18
years old,
and lived at
least 2 hours
in the
NICU/PICU
Exclusion:
Deceased
from a
multiple
gestation
pregnancy,
foster care
placement,
or death as
result of
abuse, etc.

Major
Variables
&
Definitions
IV:
Infant or
child death

M/I

DV1:
Newly
diagnosed
illnesses
such as
cancer

Repeated
measures
design —
at 1, 3, 6,
13 moths
post-infant
death

DV2:
Divorce
DV3:
Clinical
depression
DV5:
PTSD
DV4:
Suicide

Data
Analysis

BDI

ANOVA

IES-R

Post hoc
w/
Scheffe
and
Tamhane
T2 tests
176
mothers+
73
fathers
(55
coupled)
= 188
families
57%
withdrew
care
32%
failed
CPR
11%
brain
dead

Findings/
Results
18% did
not show
health
improvement over
13 months
32%
hospitalized post
death,
28% of
which
were
stressrelated.
Chronic
illness:
108 to 240
132 new
diagnoses,
including
depression
angina
HTN
asthma
arthritis.
2 of which
were
cancer.
1 suicide.

Level/
QE
Decision
QE: 3
Strengths:
Willingnes
to approach
and follow
bereaved
Families,
longterm;
extensive
family
character.
Weakness:
54%
response
(only those
who reply
are ready to
talk about
the death –
predispose
to healthier
outcomes);
79%
minority,
35% well
educated
with
income
greater than
$50,000/yr.
Decision:
Yes,
Families w/
experience
trauma
related to
their child
experience
a twofold
rise in
health
conditions.

Key: CF – Conceptual Framework; BDI — Beck Depression Inventory; Decision – Decision for
practice/application to practice; DV- dependent variable; IES-R – Impact on Events Scale- Revised; IVindependent variable; LCT — Conceptual Model for Understanding Life Crises and Transition; M/I —
Measurement/Instrumentation; N — number of studies; n- number of participants; NICU — neonatal intensive care
unit; PICU – Pediatric Intensive Care Unit; PTSD-Post-Traumatic Stress Disorder; QE — Quality of Evidence.

NICU PTSD

37

Appendix E

Synthesis Table
Author

Aftyka

Bellini

Clottey

Garfield

Year
Design
Size
Setting
Tool
BAI
BDI
CESD
COPE
DTS
IES-R
IHSI
LR
Interview
NBRS
REDCap
SASRQ
PPQ
PTSDQ
PSS-10
PSS:NICU
PSS:PBC
SPSS
STAI
The Worry
Index
VCS
Findings
Consider all
parents
high risk
Screening
Use of
LMHP
NICU staff
aware/creat
e role for
parent
Seek lowincome,
urban,
single,
VLBW,
MHI
mothers
Advanced
Education
as risk
factor

2014
DST
66
NICU

2009
LR
--NICU

2013
LR
--NICU

2015
DST
113
NICU

HattersFriedman
2013
MTA
150
NICU

x
x

HolditchDavis
2015
RCT
232
NICU

Lasiuk

Shaw

Shaw

Youngblut

2013
DST
21
NICU

2013
DST
56
NICU

2014
DST
135
NICU

2013
DST
249
COMM

x
x

X

x

x
x

(x)
x

x

x
x

(x)

x

(x)

x

X
X

x

x

x

x
x

x

X

X

x

x
x

x

x
x

x
x

X
x
x

x

x
X

x

x

X

x

X

X

X

x

X

x

x

X

X

X

x

X
X

NICU PTSD
PPD vs
PTSD
PTSD
perpetuates
physical
illness

38
X
X

Key: BAI — The Beck Anxiety Inventory; BDI — Beck Depression Inventory; CESD — Center for
Epidemiological Studies Depression Scale; COMM – Community; COPE – The Brief Cope; DST –
Descriptive/Survey; DTS – Davidson Trauma Scale; IES-R – Impact of Event Scale — Revised; IHSI – Illness
Health Severity Index; LR – Literature Review; LMHP – Licensed Mental Health Provider; MHI – Mental Health
Issues; MTA – Meta-Analysis; NBRS — Neuro-biological Risk Score; NICU – Neonatal Intensive Care Unit; PPD
– Postpartum Depression; PPQ — Perinatal Post-traumatic Stress Disorder Questionnaire; PSS-10 — Perceived
Stress Scale; PSS: NICU – Parental Stressor Scale: NICU; PSS:PBC – Parent Stress Scale: Prematurely Born
Child; PTSD – Posttraumatic Stress Disorder; PTSDQ — Posttraumatic Stress Disorder Questionnaire; RCT –
Randomized Control Trial; REDCap – Research Electronic Data Capture; SASRQ -Standard Acute Stress
Reaction Questionnaire; SR – Systematic Review; STAI — State-Trait Anxiety Inventory; VCS – Vulnerable Child
Scale; VLBW – Very Low Birth Weight; X – main finding; (x) – mentions in source.

NICU PTSD

39

Appendix F
Moos & Schaefer’s Conceptual Model for Understanding Life Crises and Transition

NICU PTSD

40

Appendix G
Model for Evidence-Based Practice Change (Rosswurm & Larrabee, 1999)

NICU PTSD

41

Appendix H
PARENTAL STRESS SCALE: NEONATAL INTENSIVE CARE UNIT
Margaret S. Miles, RN, PhD, Emeritus Professor
Carrington Hall, CB 7460
School of Nursing
University of North Carolina
Chapel Hill, NC 27599-7460
mmiles@email.unc.edu
Copy of Tool
Psychometrics and References
Information for Researchers
Permission Form
2015

NICU PTSD

42

PARENTAL STRESS SCALE: NEONATAL INTENSIVE CARE UNIT
We are interested in knowing more about the stresses experienced by parents when a
premature is sick and hospitalized in an neonatal intensive care unit (NICU). We would like to
know about your experience as a parent whose child is presently in the NICU.
This questionnaire lists various experiences other parents have reported as stressful when
their baby was in the NICU. We would like you to indicate how stressful each item listed below
has been for you. By stressful, we mean that the experience has caused you to feel anxious,
upset, or tense. On the questionnaire, circle the single number that best expresses how stressful
each experience has been for you. The numbers indicate the following levels of stress:
1 = Not at all stressful the experience did not cause you to feel upset, tense, or anxious
2 = A little stressful
3 = Moderately stressful
4 = Very stressful
5 = Extremely stressful
If you have not experienced an item, please circle NA “not applicable”
Now let’s take an item for an example: The bright lights in the NICU.
If for example you feel that the bright lights in the neonatal intensive care unit were extremely
stressful to you, you would circle the number 5 below:
NA 1 2 3 4 5
If you feel that the lights were not stressful at all, you would circle the number 1 below:
NA 1 2 3 4 5
Below is a list of the various SIGHTS AND SOUNDS commonly experienced in an NICU. We
are interested in knowing about your view of how stressful these SIGHTS AND SOUNDS are
for you. Circle the number that best represents your level of stress. If you did not see or hear the
item, circle the NA meaning “Not applicable.”
1.

The presence of monitors and equipment

NA 1 2 3 4 5

2.

The constant noises of monitors and
equipment

NA 1 2 3 4 5

3.

The sudden noises of monitor alarms

NA 1 2 3 4 5

4.

The other sick babies in the room

NA 1 2 3 4 5

5.

The large number of people working in the unit

NA 1 2 3 4 5

NICU PTSD

43

Below is a list of items that might describe the way your BABY LOOKS AND BEHAVES
while you are visiting in the NICU as well as some of the TREATMENTS that you have seen
done to the baby. Not all babies have these experiences or look this way, so circle the NA, if you
have not experienced or seen the listed item. If the item reflects something that you have
experienced, then indicate how much the experience was stressful or upsetting to you by circling
the appropriate number.
6.

Tubes and equipment on or near my baby

NA 1 2 3 4 5

7.

Bruises, cuts or incisions on my baby

NA 1 2 3 4 5

8.

The unusual color of my baby
(for example looking pale or
yellow jaundiced)

NA 1 2 3 4 5

9.

My baby’s unusual or abnormal breathing
patterns

NA 1 2 3 4 5

10.

The small size of my baby

NA 1 2 3 4 5

11.

The wrinkled appearance of my baby

NA 1 2 3 4 5

12.

Having a machine (respirator)
breathe for my baby

NA 1 2 3 4 5

13.

Seeing needles and tubes
put in my baby

NA 1 2 3 4 5

14.

My baby being fed by an intravenous
line or tube

NA 1 2 3 4 5

15.

When my baby seemed to be in pain

NA 1 2 3 4 5

16.

When my baby looked sad

NA 1 2 3 4 5

17.

The limp and weak appearance of
my baby

NA 1 2 3 4 5

18.

Jerky or restless movements of my baby

NA 1 2 3 4 5

19.

My baby not being able to cry like
other babies

NA 1 2 3 4 5

NICU PTSD

44

The last area we want to ask you about is how you feel about your own RELATIONSHIP with
the baby and your PARENTAL ROLE. If you have experienced the following situations or
feelings, indicate how stressful you have been by them by circling the appropriate number.
Again, circle NA if you did not experience the item.
20.

Being separated from my baby

NA 1 2 3 4 5

21.

Not feeding my baby myself

NA 1 2 3 4 5

22.

Not being able to care for my baby
myself (for example, diapering,
bathing)

NA 1 2 3 4 5

23.

Not being able to hold my baby
when I want

NA 1 2 3 4 5

24.

Feeling helpless and unable to
protect my baby from pain and
painful procedures

NA 1 2 3 4 5

25.

Feeling helpless about how to help
my baby during this time

NA 1 2 3 4 5

26.

Not having time alone with my baby

NA 1 2 3 4 5

Thank you for your help.
Feel free to write about other situations that you found stressful during the time that your baby
was in the neonatal intensive care unit?

C Margaret S. Miles, RN, PhD 1987, 2004, 2011

NICU PTSD

45

PARENTAL STRESS SCALE: NEONATAL INTENSIVE CARE UNIT
Psychometrics and Scoring
The Parental Stressor Scale: NICU (PSS:NICU) was designed to measure the degree of stress
experienced by parents during hospitalization related to alterations in their parental role, the
appearance and behavior of their child, and sights and sounds of the unit. On the PSS:NICU,
parents are asked to rate items on a 5-point rating scale ranging from “not at all stressful” to
“extremely stressful.”
Data for the original psychometrics of the tool were from a sample of 119 parents (115 mothers
and 75 fathers) of premature infants hospitalized in three NICUs located in the 45idwest and
southeast United States and one NICU located in Canada. Information about the original
psychometrics and scoring can be found in the methodological article: Miles, M.S., Funk, S.G.,
& Carlson, J. (1993). Parental Stressor Scale: Neonatal Intensive Care Unit. Nursing Research,
42, 148-152.
An updated psychometric analysis of the PSS:NICU was conducted with a sample of 128
mothers of at-risk prematurely-born infants in a southeastern NICU (Miles, Holditch-Davis,
Schwartz, & Sher, 2007). Factor analysis indicated that the instrument was best conceptualized
as having two subscales instead of three. Sights and sounds of the environment (5 items) should
be combined with Infant’s Appearance subscale (14) and scored as one subscale and Parental
Role Alteration remains the second subscale (7 items). Infant’s Appearance (Factor I) explained
7.6% of the variance and Parental Role Alteration explained 6.03% of the variance. Cronbach’s
alpha was .92 for both subscales. In this study, the PSS:NICU longitudinally predicted
depressive symptoms in mothers of prematurely-born-children (Miles et al., 2007).
Scoring and Metric Considerations
Parents are asked to rate the stressfulness of each item on the PSS:NICU on a scale from
1 (not at all stressful) to 5 (extremely stressful). However, since parents may not experience
every situation—for example, seeing the baby with tubes and equipment on or near him, having
the baby’s color change suddenly, or having the baby stop breathing—they may indicate N/A
(not experienced) on that particular item on the scale. This strengthens the clinical sensitivity of
the instrument by providing two possible methods of scoring the stress of parents, the stress
occurrence level and the overall level of stress. The “Stress Occurrence Level: (Metric 1) is the
level of stress experienced by parents related to their particular situation—in which case only
those items they have experienced and rated receive a stress score on the item. The “Overall
Stress Level” (Metric 2) is the overall level of stress engendered by the NICU environment—in
which case all individuals receive a score on the item, with those not having the experience
receiving a “1” indicating no stress was experienced.
For example, if the baby had tubes or equipment on or near him, and the parent rated this
as a 3 (moderately stressful) on the stressfulness scale, the parent would receive a 3 by both
scoring methods. However, if the baby did not have tubes or equipment on or near him, the
parent did not have the experience and would not receive a score by the first scoring method

NICU PTSD

46

(Metric 1: Stress Occurrence Level). Using the second scoring method, the parent would receive
a score of 1 since this item did not produce any stress (Metric 2: Overall Stress Level).
Subscales
An updated psychometric analysis of the PSS:NICU was conducted with a sample of 128
mothers of at-risk prematurely-born infants in a southeastern NICU (Miles, Holditch-Davis,
Schwartz, & Sher, 2007). Factor analysis indicated that the instrument was best conceptualized
as having two subscales instead of three. Sights and sounds of the environment (5 items) should
be combined with Infant’s Appearance subscale (14) and scored as one subscale and Parental
Role Alteration remains the second subscale (7 items). Infant’s Appearance (Factor I) explained
7.6% of the variance and Parental Role Alteration explained 6.03% of the variance. Cronbach’s
alpha was .92 for both subscales. In this study, the PSS:NICU longitudinally predicted
depressive symptoms in mothers of prematurely-born-children (Miles et al., 2007).
Infant Appearance: Items 1 to 19
Parental Role Alteration: Items 20 to 26
Validity (selected)
In a recent study with data from 177 African American mothers of prematurely-born-children,
the correlation between the PSS:NICU subscales and other distress measures was significant and
high (Holditch-Davis et al., 2009). For Infant Appearance, the correlation with other distress
measures was high: depressive symptoms, .48, posttraumatic stress .49, and state anxiety .39.
Even higher correlations were found for Parental Role Alteration: depressive symptoms .56, post
traumatic stress .54, and state anxiety .45. The highest distress cluster mothers had significantly
higher scores on the Parental Role Alteration Stress subscale.
PSS:Infant Hospitalization
In a study of mothers of medically fragile infants, a slightly edited version of the tool, the
PSS: Infant Hospitalization was used with 81 mothers (Miles & Brunssen, 2003). The only
change was to eliminate items relevant only to preterm infants.
Mean scores on the Parental Role Alteration and Infant Appearance and Behavior subscales were
4.00 or higher and Black mothers had higher scores (Miles, Burchinal, Holditch-Davis Brunssen,
& Wilson, 2002). Total scores on the tool were related to both maternal distress and maternal
growth (Miles, Holditch-Davis, Burchinal, & Nelson, 1999). Higher scores on the subscale
Child’s Appearance and Behavior were related to higher levels of maternal worry (Doherty,
Miles, & Holditch-Davis, 2002). In a study of correlates of parental role attainment, scores on
the Parental Role Alteration subscale of the PSS:IH were related to lower levels of competence, a
component of parental role attainment (Miles, Holditch-Davis, Burchinal, & Brunssen, 2011).
Please ask for a copy.
International Use
The PSS:NICU is used all over the world and has been translated into many languages, including
Spanish, Portuguese, Swedish, Icelandic, Turkish, and Arabic. Due to limited resources, I do not

NICU PTSD

47

track or provide copies of translated instruments. These would have to be obtained from the
researcher who did the translation. Written permission in the form of an email is requested for
any changes an investigator makes to the instrument or to translate into other languages
Permission
You are free to down load or print and use the Parental Stressor Scale: NICU for your research.
However, the instrument is copyrighted and cannot be duplicated or copied without first
returning via email a signed (or indicating your name on the emailed form) permission form
including your complete address. If using the instrument only for purposes of a student paper
about the tool, no permission is necessary.
Acknowledgements
The authors acknowledge support from the Division of Nursing, Health Resources and Services
Administration, Public Health Service, Department of Health and Human Services, Grant
NU01284. The authors also wish to acknowledge Donna Shields-Poe, Mount Sinai Hospital,
Toronto, Ontario, and Janet Pinelli, McMaster University, Toronto, Ontario, for their
participation in data collection with partial funding from the Ontario Ministry of Health Systems
Research. Further support was from R01 NR02868, NR03962, and NR 05263.
References
Miles, M.S., Funk, S.G., & Kasper, M.A. (1991). The neonatal intensive care unit environment:
Sources of stress for parents. AACN Clinical Issues in Critical Care Nursing, 2, 346-354.
Miles, M.S., Funk, S. & Kasper, M.A. (1992) The stress response of mothers and fathers of
preterm infants. Research in Nursing and Health, 15, 261-269.
Miles, M.S., Funk, S., Carlson, J. (1993) The Parental Stressor Scale: Neonatal Intensive Care
Unit. Nursing Research, 42, 148-152.
Miles, M.S., Holditch-Davis, D., Burchinal, P., & Nelson, D. (1999). Distress and growth
outcomes in mothers of medically fragile infants. Nursing Research, 48, 3, 129-140.
Miles, M.S., Holditch-Davis, D., Brunssen, S., Burchinal, P., & Wilson, S. (2002). Perceptions
of stress, worry, and support in Black and White mothers of hospitalized medically fragile
infants. Journal of Pediatric Nursing, 17, 82-88.
Docherty, S., Miles, M.S., & Holditch-Davis, D. (2002) Perception of illness severity and worry
about infant health in mothers of hospitalized medically fragile infants. Advances in Neonatal
Care, 2, 84-92.
Miles, M.S., & Brunssen, S. (2003). Parental Stressor Scale: Infant Hospitalization. Advances in
Neonatal Nursing, 3,189-196.
Miles, M.S., Holditch-Davis, D., Schwartz, T. A., & Sher, S. (2007). Depressive symptoms in
mothers of prematurely-born-children. Journal of Developmental and Behavioral Pediatrics,28,
36-44
Holditch-Davis, D., Miles, M. S., Weaver, M. A., Black, B. P., Beeber, L. S., Thoyre, S., &
Engelke, S. (2009). Patterns of distress in African-American mothers of preterm infants. Journal
of Behavioral and Developmental Pediatrics, 30(3), 193-205. NIHMSID: NIHMS126550.

NICU PTSD

48

Miles, M.S., Holditch-Davis, D., Burchinal, M., & Brunssen, S. (2011). Maternal role
attainment with medically fragile infants: Part 1. The process over the first year of life. Research
in Nursing and Health , 34(1), 20-34.

NICU PTSD

49

Appendix I

NEONATAL INSTRUMENT
OF
PARENT SATISFACTION
WITH CARE

McMASTER UNIVERSITY
Faculty of Health Sciences
School of Nursing
1200 Main Street West, Hamilton, Ontario, L8N 3Z5

NICU PTSD

50

Study ID Number: __________
On behalf of the project team, I would like to thank you for agreeing to participate.
I. How do you think your baby is doing? Would you say that the baby is…
1

DOING BETTER THAN YOU EXPECTED

2

DOING AS WELL AS YOU EXPECTED

3

DOING WORSE THAN YOU EXPECTED

II. This questionnaire has been designed to measure your satisfaction or
dissatisfaction with the MEDICAL care your baby has received in the NICU. The
MEDICAL caregivers are the neonatologists, nurse practitioners, specialist, and
residents. How much contact would you say you have had with the team?
No contact

Minimal

Some

Frequent contact

III. Of these individuals, with whom have you had the MOST contact?
Neonatologist

Nurse Practitioner

Specialist

Resident

FOR ALL THE FOLLOWNG QUESTIONS PLEASE FOCUS ONLY ON YOUR
CONTACT WITH THE MEDICAL CAREGIVERS. WE DO NOT WANT YOU
TO INCLUDE YOUR CONTACT WITH THE STAFF NURSES.
IV. In general, how satisfied are you with the care your baby has received in the
NICU from these MEDICAL caregivers? Would you say you are…
1

NOT REALLY SATISFIED

2

GENERALLY SATISFIED

3

COMPLETELY SATISFIED

NICU PTSD

51

1. How often did you find the change of medical caregivers looking after your
baby difficult? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
2. How often did these caregivers present your baby’s condition in a way which
was scary or frightening? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
3. How often did the caregivers fail to tell you when they were going off duty?
Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
4. How often did the caregivers fail to tell you who was going to fill in while they
were off duty? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
5. How often did you feel confused about whom to trust? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME

NICU PTSD

52

6. How often did you receive conflicting information from different MEDICAL
caregivers? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
7. How often did you feel that your baby was lost in the shuffle of a large unit?
Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
8. How often did you have difficulty finding out who your baby’s MEDICAL
caregivers were? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
9. How often did you find the change of MEDICAL caregivers over the weekends
a problem? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
10. How often did the caregivers fail to inform you about tests or x-ray results?
Would you say…

1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME

NICU PTSD

53

11. How often did you have to ask the MEDICAL caregivers to repeat
explanations several times? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
12. How often were you uncertain who to talk to about your baby’s condition?
Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
13. How often did the MEDICAL caregivers fail to inform you completely about
the results of a procedure? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
14. How often did the caregivers keep you waiting for results of tests? Would you
say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
15. How often were you informed about something after-the-fact or by accident?
Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME

NICU PTSD

54

16. How often did you feel that you knew who was who? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
17. How often did the MEDICAL caregivers volunteer how they felt about your
baby’s condition? Would you say…
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
18. How often did the MEDICAL caregivers prepare you for your baby’s stay in
the NICU?
1. A FAIR BIT OF THE TIME
2. A LITTLE OF THE TIME
3. VERY LITTLE OF THE TIME
19. How satisfied were you with the extent to which the caregivers kept you
informed as your baby’s condition changed? Would you say…
1. NOT REALLY SATISFIED
2. GENERALLY SATISFIED
3. COMPLETELY SATISFIED
20. How satisfied were you with how often the caregivers offered to meet with you
in private? Would you say…
1. NOT REALLY SATISFIED
2. GENERALLY SATISFIED
3. COMPLETELY SATISFIED

NICU PTSD

55

21. How satisfied were you with the number of meetings arranged with your
baby’s
doctors to discuss what you might expect for your baby in the future? Would
you say…
1. NOT REALLY SATISFIED
2. GENERALLY SATISFIED
3. COMPLETELY SATISFIED
22. How satisfied were you with how the MEDICAL caregivers told you about the
long-term expectation or outlook for your child? Would you say…
1. NOT REALLY SATISFIED
2. GENERALLY SATISFIED
3. COMPLETELY SATISFIED
23. How satisfied were you with how much the caregivers were sensitive to the
other pressures in your life? Would you say…
1. NOT REALLY SATISFIED
2. GENERALLY SATISFIED
3. COMPLETELY SATISFIED
24. How satisfied were you with the extent to which the caregivers offered
personal opinions or experiences about your baby’s future condition? Would you
say…
1. NOT REALLY SATISFIED
2. GENERALLY SATISFIED
3. COMPLETELY SATISFIED
25. Have the MEDICAL caregivers told you when your baby will be discharged
from the NICU?
1. YES
2. NO

NICU PTSD

56

If yes, how satisfied were you with the MEDICAL caregivers in preparing you for
the discharge of your baby? Would you say…
1. NOT REALLY SATISFIED
2. GENERALLY SATISFIED
3. COMPLETELY SATISFIED
26. How satisfied were you with your involvement in the decision to discharge
your baby? Would you say…
1. NOT REALLY SATISFIED
2. GENERALLY SATISFIED
3. COMPLETELY SATISFIED
27. How sure were you that your baby’s discharge was because the baby was
getting better rather than the unit needing the bed?
1. THE NEED FOR A BED PLAYED SOME ROLE IN DECISION
2. MODERATELY SURE BABY WAS READY FOR DISCHARGE
3. TOTALLY SURE BABY WAS READY FOR DISCHARGE
28. Were there times when you thought there were incidents in which errors
occurred in the medical care of your baby?
1. YES
2. NO
29.

How many times did such incidents occur? _________

30.

If your friend was in similar circumstance, would you recommend they
come here or go somewhere else for neonatal intensive care?
1. COME HERE
2. GO SOMEWHERE ELSE

Thank you again for taking the time to participate in this project. It is very much
appreciated and your answers are very helpful.

NICU PTSD

57

Appendix J
Illness Severity
Cumulative
Frequency
Valid

Percent

Valid Percent

Percent

Concerning

2

10.0

10.0

10.0

Very Concerning

4

20.0

20.0

30.0

Critical

3

15.0

15.0

45.0

11

55.0

55.0

100.0

20

100.0

100.0

Severe long term
needs/death expected
Total

Mental Health History
Cumulative
Frequency
Valid

Percent

Valid Percent

Percent

NO

14

70.0

70.0

70.0

YES

6

30.0

30.0

100.0

Total

20

100.0

100.0

Appendix K
SATOverallCareSatisfaction
Cumulative
Frequency
Valid

Percent

Valid Percent

Percent

not satisfied

3

15.0

15.0

15.0

Generally Satisfied

9

45.0

45.0

60.0

Completely Satisfied

8

40.0

40.0

100.0

20

100.0

100.0

Total

NICU PTSD

58

Appendix L
SAT Would you recommend a friend hospitalize their baby here
Cumulative
Frequency
Valid

Come Here
Go somewhere else
Total

Percent

Valid Percent

Percent

19

95.0

95.0

95.0

1

5.0

5.0

100.0

20

100.0

100.0

Appendix M
SAT How often confused who to trust
Cumulative
Frequency
Valid

Percent

Valid Percent

Percent

A Fair Bit of the Time

7

35.0

35.0

35.0

A Little of the Time

8

40.0

40.0

75.0

Very Little of the Time

5

25.0

25.0

100.0

20

100.0

100.0

Total

NICU PTSD

59

Appendix N

NICU PTSD

60

Appendix O

Group Statistics
Counseled Up to 4 hours
SATOverallCareSatisfaction

N

Mean

Std. Deviation

no

13

2.31

.751

.208

yes

7

2.14

.690

.261

Appendix P
PSS being separated from my baby
Cumulative
Frequency
Valid

Percent

Valid Percent

Percent

Not at all stressful

3

15.0

15.0

15.0

Moderately Stressful

2

10.0

10.0

25.0

Very Stressful

2

10.0

10.0

35.0

Extremely Stressful

13

65.0

65.0

100.0

Total

20

100.0

100.0

PSS feeling helpless and not being able to protect my baby from pain
Cumulative
Frequency
Valid

Std. Error Mean

Percent

Valid Percent

Percent

Not at all stressful

1

5.0

5.0

5.0

Moderately Stressful

2

10.0

10.0

15.0

Very Stressful

2

10.0

10.0

25.0

Extremely Stressful

15

75.0

75.0

100.0

Total

20

100.0

100.0

NICU PTSD

61

PSS feeling helpless about how to help my baby
Cumulative
Frequency
Valid

Percent

Valid Percent

Not at all stressful

1

5.0

5.0

5.0

Moderately Stressful

3

15.0

15.0

20.0

Very Stressful

5

25.0

25.0

45.0

Extremely Stressful

11

55.0

55.0

100.0

Total

20

100.0

100.0

Appendix Q
SAT Were there times you thought errors occurred in your
baby’s care
Cumulative
Frequency
Valid

Percent

Percent

Valid Percent

Percent

YES

9

45.0

45.0

45.0

NO

11

55.0

55.0

100.0

Total

20

100.0

100.0

NICU PTSD

62

Appendix R
Group Statistics
Counseled 5 hours or more

N

Mean

Std. Deviation

Std. Error Mean

PSS feeling helpless about

no

7

4.4286

.97590

.36886

how to help my baby

yes

13

4.1538

1.14354

.31716

PSS not having time alone

no

7

2.8571

2.03540

.76931

with my baby

yes

13

2.5385

1.19829

.33235

PSS presence of monitors

no

7

3.0000

1.15470

.43644

and equipment

yes

13

3.3846

1.50214

.41662

PSS constant noise of

no

7

3.0000

1.41421

.53452

monitors and equipment

yes

13

3.9231

1.03775

.28782

7

3.2857

1.70434

.64418

yes

13

4.5385

.77625

.21529

PSS other sick babies in the

no

7

2.0000

1.73205

.65465

room

yes

13

2.4615

1.26592

.35110

PSS large number of people

no

7

2.1429

1.34519

.50843

working in the room

yes

13

2.1538

1.06819

.29626

7

2.7143

1.11270

.42056

PSS sudden noises of alarms no

PSS tubes and equipment on no
or near my baby

yes

13

4.2308

.83205

.23077

PSS bruises, cuts, incisions

no

7

3.0000

1.73205

.65465

on my baby

yes

13

3.7692

1.16575

.32332

PSS the unusual color of my

no

7

2.4286

1.61835

.61168

baby (pale or jaundiced)

yes

13

2.7692

1.09193

.30285

PSS baby’s unusual

no

7

2.7143

1.25357

.47380

breathing patterns

yes

13

3.6923

1.18213

.32786

PSS the small size of my

no

7

2.1429

1.34519

.50843

baby

yes

13

2.6923

1.54837

.42944

PSS the wrinkled

no

7

1.2857

.75593

.28571

appearance of my baby

yes

13

2.1538

1.34450

.37290

PSS having a machine

no

7

2.2857

1.88982

.71429

breathe for my baby

yes

13

4.2308

1.16575

.32332

PSS seeing needles and

no

7

3.1429

1.57359

.59476

tubes put in my baby

yes

13

4.2308

1.01274

.28088

PSS my baby being fed by

no

7

3.4286

1.51186

.57143

an intravenous line or tube

yes

13

3.1538

1.28103

.35529

PSS when my baby seemed

no

7

3.4286

1.81265

.68512

to be in pain

yes

13

4.2308

1.16575

.32332

NICU PTSD

63

PSS when my baby looked

no

7

3.2857

2.13809

.80812

sad

yes

13

3.6923

1.25064

.34687

PSS the limp and weak

no

7

3.2857

1.70434

.64418

appearance of my baby

yes

13

3.9231

1.25576

.34828

PSS jerky or restless

no

7

2.5714

1.51186

.57143

movements of my baby

yes

13

2.9231

1.25576

.34828

PSS my baby not being able

no

7

2.5714

1.39728

.52812

to cry like other babies

yes

13

3.2308

1.42325

.39474

PSS being separated from

no

7

3.7143

1.49603

.56544

my baby

yes

13

4.3077

1.49358

.41424

PSS not feeding my baby

no

7

3.7143

1.38013

.52164

myself

yes

13

3.5385

1.33012

.36891

PSS not being able to care

no

7

3.2857

1.25357

.47380

for my baby myself

yes

13

2.7692

1.36344

.37815

PSS not being able to hold

no

7

3.5714

1.61835

.61168

my baby when I want

yes

13

3.6154

1.66024

.46047

PSS feeling helpless and not

no

7

4.7143

.75593

.28571

13

4.3846

1.19293

.33086

being able to protect my baby yes
from pain