Kathy Ahern, PhD, RN ❍ Section Editor

Ethical Issues in Neonatal Care

NICU Bereavement Care and Follow-up

Support for Families and Staff
Judy Levick, MSW, ACSW, LMSW; Jane Fannon, RN, BSN, CLC; Janet Bodemann, RN;
Shari Munch, PhD, LCSW

ABSTRACT
Background: Experiencing the death of an infant in the neonatal intensive care unit (NICU) affects both families and staff,
creating challenges and opportunities for best practices.
Purpose: This practice-based article describes a comprehensive approach to delivering bereavement services to NICU
families, as well as education and support to NICU staff.
Methods: Bereaved NICU parent and staff survey feedback, including quotes describing individual experiences and sug-
gestions for improved service delivery.
Results: Bereaved NICU families and caregivers find meaning and purpose in the act of creating keepsake memories at
the time of the infant’s death. Mutual healing takes place with subsequent, individualized follow-up contacts by staff
familiar to the bereaved parents over the course of a year.
Implications for Practice: Those staff involved in the care of a NICU infant and family, during and after the infant’s death,
attest to the value in providing tangible keepsakes as well as continuing their relationship with the bereaved parents. An
effective administrative infrastructure is key to efficient program operations and follow-through.
Implications for Research: Studying different methods of in-hospital and follow-up emotional support for NICU bereaved
families. Identifying strategies for staff support during and after NICU infant loss, and the impact a formal program may
have on staff satisfaction and retention.
Key Words: bereavement, bereavement support, neonatal intensive care unit (NICU), perinatal bereavement, staff sup-
port, staff–family relationships

ne year later a mother states: “I really appre- the neonatal intensive care unit (NICU) experience a

O ciate the things that were done for me—

keepsakes, cards, phone calls. It helped me in
a way I didn’t even know I needed. I think the neo-
natal staff is made up of a special kind of people,
angels, and I appreciate every single thing they have
done with all of my heart. I’m thankful I had them
and that [my baby] had such wonderful people tak-
ing care of him.”
The death of a child has been defined as “particu-
larly intense, complicated and long-lasting for par-
ents.”1 In the United States, 4 in 1000 infants die in
the first 28 days of life, with the most common
causes being prematurity and/or low birth weight at
25% and birth defects at 20%.2 Bereaved families in
Author Affiliations: Spectrum Health Helen DeVos Children’s Hospital,
Grand Rapids, Michigan (Mss Levick, Fannon, and Bodemann); and
School of Social Work, Rutgers, The State University of New Jersey,
New Brunswick (Dr Munch).
Work Occurred at Spectrum Health Helen DeVos Children’s Hospital
NICU.
Supported by Spectrum Health Helen DeVos Children’s Hospital.
The authors declare no conflict of interest.
Correspondence: Judy Levick, MSW, ACSW, LMSW, Spectrum
Health Helen DeVos Children’s Hospital, 100 Michigan St, N.E., MC 35,
Grand Rapids, MI 49503 (jklev8@gmail.com).
Copyright © 2017 by The National Association of Neonatal Nurses
DOI: 10.1097/ANC.0000000000000435
unique and profound grief journey, which requires
staff to provide individualized support at the time of
their infant’s death and beyond.3 When a baby dies
in the NICU, comprehensive bereavement services
that include staff training and well-defined family
support practices are imperative.3-5
In the past 50 years, the notion of providing
bereavement support to parents has garnered increas-
ing attention. A 40-year review of the perinatal litera-
ture, from 1966 to 2006, focused on parental experi-
ences with stillbirth and early infant death, primarily
in the hospital, with encouragement to facilitate pro-
vision of photographs, memorabilia, and/or follow-
up support, practices that were quite limited in the
early years.6 Parent experiences with health providers
were also reviewed in this time frame, studying which
behaviors are helpful or harmful to families.7 By the
1980s, there was greater recognition that parents
benefitted from comprehensive bereavement prac-
tices such as seeing and holding their infant, photo-
graphs, lock of hair, and other memorabilia.8-11A
more recent review of the literature published in 2010
by the American Academy of Pediatrics revealed
qualitative descriptions of best practices for end-of-
life neonatal intensive unit (NICU) care, along with a
call for empirical studies.12 There is also an increase in
international reviews, which echo similar results and

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 2 Levick et al
recommendations, exploring parent and provider
perceptions,13-15 highlighting the need for emotional
support for parents and staff training.8,11,12,14,15
The current literature, as part of the pediatric and
perinatal palliative care movements, which has
emerged in the past 5 to 10 years, continues to call
for formalized bereavement care programs.16-19 The
palliative care movements have pushed for more
attention to end-of-life care, particularly in terms of
designating certain healthcare providers, roles and
protocols—not just in terms of decision-making, but
bereavement care, too.17,20-23 Much of the qualitative
literature includes suggested practices at the time of
the infant’s death, including a list of keepsakes or
memorabilia ideas, including prints and clay impres-
sions of the infant’s hands and feet.3,5,10,12,20,24 To
date, there are no published recommendations for
plaster impressions of the infant’s facial features or
impressions of other family members’ hands.
The literature advocates the importance of fol-
low-up emotional support for bereaved parents, yet
remains vague in terms of who specifically provides
this service or a recommended length of time.9,11,16,24
Even when a length of time is specified, it is unclear
whether the hospital support staff providing the
follow-up contact is someone who knew the family
intimately during the NICU hospitalization or an
anonymous bereavement provider.3,25 Interestingly,
as early as 1984, White et al10 stated that it was
“especially meaningful [for parents] to meet with
caregivers who had cared for their baby”; yet, the
authors did not describe a systematic NICU proce-
dure to ensure that this happens.
In addition to providing bereavement support to
families, a growing body of literature focuses on the
importance of staff education and support during
and after the death event in the NICU setting.7,17,21,26-30
Comfort with NICU end-of-life care,17,21 debriefing
and peer support, 28,30 and encouraging a balance
between professional boundaries and intimacy with
parents28 are examples of staff growth and develop-
ment initiatives reported.
Collectively, the literature to date is replete with
neonatal/perinatal bereavement keepsake and ritu-
als information, yet scant documentation exists
about standardized programs. Building upon the lit-
erature, this practice-based article describes our
NICU bereavement care program, providing an
example of such a standardized program. We include
accounts of bereaved parents and NICU staff, and
highlight a novel program feature: its focus on inten-
tional, individualized matching for follow-up emo-
tional support for at least 1 year. Special attention is
also given to staff experiences with infant death—
the emotional impact on staff, their sense of mean-
ing, their need for continued support, and the impor-
tance of their ongoing involvement with bereaved
families for mutual healing.
Copyright © 2017 National Association of Neonatal Nurses. Unauthorized reproduction of this article is prohibited.
ANC-D-17-00013.indd 2
HELEN DEVOS CHILDREN’S HOSPITAL
BEREAVEMENT CARE PROGRAM
Setting
Spectrum Health Helen DeVos Children’s Hospital
(HDVCH)31 is a level IV, 108-bed regional NICU,
which admits 1400 infants each year. The primary ser-
vice area encompasses 35 counties in West Michigan.
There is an average of 30 infant deaths per year, and
the primary causes of death are extreme prematurity
and congenital anomalies. Institutional support is
essential for the success of any bereavement care pro-
gram.3,18 HDVCH NICU has a long history of admin-
istrative commitment to offering and expanding
bereavement services to families and providing staff
support, both financially and philosophically.
Bereavement Care Team
The NICU Bereavement Care Team (BCT) leadership
consists of a social worker and 2 nurse leaders, one of
whom is a bereaved parent. They each have over
20 years of experience in bereavement care, bedside
nursing and social work roles, and 2 also coordinate
the comprehensive parent-to-parent partnership,
which uses trained volunteer former NICU parents to
support new NICU parents as peer mentors.32 The
interdisciplinary BCT, chaired by the nurse and social
work leaders, meets bimonthly to discuss quality
improvements on the basis of parent feedback and
staff experiences.
The nurse leaders provide ongoing, hands-on train-
ing and oversight for additional bereavement care
staff specialists, who are primarily nurses. These nurse
leaders are notified when an infant death occurs, and
either come in from home or another assignment, to
train bedside nurses to deliver care, prepare keepsakes,
and help support the family. Once trained, nurses may
not require this leadership assistance. In addition,
many HDVCH NICU staff members have received
Resolve Through Sharing4 perinatal bereavement care
training. The social work and nurse leaders coordinate
follow-up care for bereaved parents. Trained bereaved
parent-to-parent volunteers are also invited to share
their grief story and provide the parent perspective at
new nurse orientations.32
In addition to the nurse and social work leaders,
neonatologists, nurses, social workers, pastoral care,
and child life specialists are the frontline providers for
end-of-life care. If requested, a music therapist pro-
vides soft background music and offers heartbeat
recordings set to music chosen by the parents. This
interdisciplinary team helps the family navigate their
last moments with their child.
Parent and Family Care Before and After
an Infant’s Death
Offering parents choices while gently educating and
guiding them through their unique grief experience
www.advancesinneonatalcare.org
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 NICU Bereavement Care and Follow-up Support for Families and Staff
is the defining goal of this program—helping them
say goodbye before they barely had the chance to say
hello to their newborn. They are encouraged to
bring siblings and invite loved ones to the NICU
bedside. Grandparents, other extended family, close
friends, and clergy are welcome to participate,
depending on the parents’ wishes.
Offering parents the opportunity to hold and bathe
their infant can be very meaningful and a way for
them to nurture their infant as they say goodbye. In
addition, preserving the infant’s bedside environment
until the parents are ready to remove items is very
important to ensure they have closure. The parents
may choose (or ask staff) to remove photographs,
milestone signs, and other tangible memories at their
infant’s bedside. It is important to remember that this
hospital space will become embedded in their minds
forever as their infant’s first (and only) “nursery,” and
not to rush the process of saying goodbye.
Keepsakes, offered with written parental permis-
sion, enable families to remember the short time
with their precious child.3-5,24 When parents are
uncertain about the potential value of keepsakes, the
following talking points are used by staff to help
illustrate these benefits: “We have learned from
other families that this can be helpful to their grief
over time” and “I can make the keepsakes today and
hold onto them, in case you change your mind.” In
fact, one family requested their infant’s keepsakes
2 years later. The bereavement/keepsake checklist
(Box 1) provides an organized, helpful list of
bereavement support reminders for staff, along with
a list of keepsakes to prepare for the bereaved NICU
family members. This checklist was developed for
the staff by the BCT to have a clear plan to follow
during this highly charged emotional time.
It is important to offer parents the opportunity to
help with the ink footprints, foam, and/or alginate
plaster impressions, which requires one person to
hold the infant while a second person gently guides
the infant’s body into the foam or alginate. Every
parent is different in their desire to help, and most
help in some capacity (e.g., actually creating the
keepsakes), holding their infant while the staff does
impressions. If not, parents are asked whether they
want to be present while impressions are made. A
distinctive aspect of our program is the offer of par-
ent and/or sibling hand impressions to be displayed
with the infant’s, as well as face profile impressions
of the infant, all of which bring the parents and fam-
ily members comfort, as another memory of their
infant (Figures 1-4). It is important to mention that
when the face profile impressions were first intro-
duced, the staff’s reaction was guarded, wondering
whether this would be uncomfortable for the par-
ents. Over time, staff has learned from parents who
have shared their overwhelming interest in creating
this additional keepsake item. As one parent stated,
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ANC-D-17-00013.indd 3
3
“It’s all we have” (to remember our baby), and
another said, “Everything means something.”
Children deserve special attention when their
infant sibling dies. The NICU experience in itself can
be traumatic, but the unique loss of one’s sibling can
add additional stress, confusion, and anxiety.
Depending on their age, developmental stage, and
level of involvement, siblings’ grief responses need to
be monitored and honored.33,34 An 8-year-old
bereaved sibling shared in a letter, “I remember
when my brother was born … I held him … I remem-
ber getting stones at the grave … I remember his hair
was curly.” Moreover, having preestablished con-
tacts with siblings during the hospitalization helps to
facilitate the work the BCT provides at the time of
death. At HDVCH NICU, siblings are welcome in
the NICU at any time; we offer sibling support pro-
grams,33-35 and the child life specialists host a weekly
“Super Sibs” pizza party with age-appropriate activ-
ities. If the children have been involved in NICU sib-
ling activities and regularly scheduled time with
their sibling in the NICU, they are already immersed
in the NICU milieu and reasonably comfortable
with its surroundings and staff. The interdisciplinary
teams—nurses, child life specialists, social work-
ers—often have made a connection with the sibling,
so that when death occurs, they are in a prime posi-
tion to attend to the unique emotional needs of each
sibling during the death/bereavement events.
PARENT AND FAMILY FOLLOW-UP CARE
At the time of the infant’s death, parents are informed
that a staff member will be reaching out to them in
the days ahead, unless they state a preference to not
receive this contact. A sympathy card is initiated by
one of the BCT nurse leaders, signed by staff across
the NICU interdisciplinary team, and sent to the
bereaved family within 2 weeks after their infant’s
death. Comforting words with personal, individual-
ized messages and memories specific to their infant
are written on each card, such as the following: “I
am heartbroken for your loss. Getting a smile or
babbling out of her made my day” and “I enjoyed
working on reaching for her toys.”
The neonatologist who was most involved in the
infant’s care attempts a call to the parents 2 to
3 weeks after the infant’s death, offering a family
conference and answering medical questions the
family might have. Autopsy results are also shared
when requested. One parent shared on her survey
that she appreciated the neonatologist’s 2 attempts
to call, finding the voicemail messages comforting—
even though she did not feel a need to talk with him.
The ongoing telephone follow-up by the intention-
ally designated staff member begins after 3 weeks, a
time frame that was suggested by former bereaved
parents in our NICU, affording time beyond the
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 4 Levick et al

BOX 1. Bereavement/Keepsake Checklist

__Use supportive communication and offer choices
__Ask for assistance from experienced bereavement team members and interdisciplinary team (social work,
chaplain, child life specialist)
__Request music therapist to provide soft music, if comforting to family
__Sign Consent Form (parent) for permission to prepare keepsakes
__Offer bath, skin-to-skin, family members’ help with keepsakes
__Offer music therapist recording of baby’s heartbeat to music
__Provide the following, per family members’ choice:
__Hand-painted keepsake boxes and/or quilted bag
__Bereavement information folder
__Certificate of Life
__Beaded name bracelet
__Memory stone
__Ink handprints and footprints
__Foam impressions—baby’s hands and feet, parents’ and siblings’ hand(s) with baby’s (Figures 1 and 2)
__Alginate impressions—hands, feet, face (Figures 3 and 4)
__Locket of hair (2 × 2 baggie, no tape); strip of baby’s heartbeat
__Seashell used for baptism
__Bereavement gown and/or gown crafted from donated wedding dress
__Photographs (with outfit chosen by parents)—printed photographs and DVD
__Donated journal, photo album, blanket, books on grief
__Prepare the following items for siblings:
__Keepsake box
__Children’s storybooks
__Stuffed animal(s)
__Memory stone
__Ink handprints and footprints
__Impressions—siblings’ hand(s) with baby’s (Figures 1 and 2)
__Give as many of the belongings/photographs as possible to family before they leave
__Escort parents and siblings to car or make sure extended family member does
__Chart on Bereavement Form
__Place sympathy card for family at charge desk
__Place support/appreciation card for staff at charge desk
__Call parents when remaining keepsakes are ready—offer pick up or mailing
__If mailing, verify address and describe contents in detail to prepare them
__If parents express they are not ready, give them contact information and store keepsakes

funeral and after the neonatologist’s call. In most
situations, the infant’s designated primary care nurse,
and/or another nurse who was intimately involved in
the care, makes the calls. This individualized approach
is intentional, as it provides emotional support, edu-
cation, and as-needed referrals for each bereaved
family with the nurse(s) who personally provided pri-
mary care and/or bereavement care in the NICU.
Cards are sent and calls attempted for at least 12
months, unless a family has specifically requested to
not receive further contact. The amount and fre-
quency of contacts are determined by individual fam-
ily needs. Information and guidelines for the follow-
up provider are shared in Box 2. In addition, the
neonatologist sends a card 11 months after their loss,
in anticipation of the 1-year anniversary date.
The administrative infrastructure to support the
program is organized as follows. First one of the

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 NICU Bereavement Care and Follow-up Support for Families and Staff 5

FIGURE 1 FIGURE 2

Foam impressions - parent, sibling and infant hands. Foam impressions - parent hand and infant feet.

BCT nurse leaders records information onto a
spreadsheet that includes the infant’s date of birth,
date of death, parents’ address and phone number,
dates for sympathy cards, keepsakes, and the tim-
ing of the follow-up parent survey about the pro-
gram. The name of follow-up support staff respon-
sible for the follow-up and reminders of the time
frames to complete are also included. The follow-
up support staff is responsible for continuing
contacts and cards, and informs the BCT leader if
unable to fulfill the 12-month commitment, at
which time the BCT leader assesses the family’s
ongoing needs and finds an appropriate substitute.
The neonatologists’ administrative assistant
reminds the neonatologist to call the parents 2 to 3
weeks after their infant’s death, and sends the
11-month card personally signed by one or more
neonatologists.

FIGURE 3

Alginate impressions - parent and infant hands and feet.

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 6 Foam impressions - parent, sibling and infant hands.

their Muslim faith does not allow them to create

FIGURE 4
Alginate impressions - infants’ face profile.
Cultural and Religious Variations in All
Aspects of Bereavement Care
Sensitivity to each family’s cultural, spiritual, and
religious beliefs and practices at the time of their
infant’s death, and beyond, is paramount to building
supportive relationships and helping the families to
find meaning when the unthinkable has hap-
pened.24,36,37 One mother shared that, upon her
request, a nurse prayed with her at the bedside and
helped her cherish the last moments she had with her
infant. Another family member communicated that
keepsakes, and that a follow-up call would actually
go against their religious beliefs; instead they pre-
ferred to rely on their faith community for support.
In contrast, a family of Amish faith welcomed and
appreciated the follow-up support from their bed-
side nurse, along with their supportive faith com-
munity. Several months after the death of their
infant, this family sent a 9-page letter with perspec-
tives and poems from each member of the family,
including multiage siblings and a grandparent (as
written storytelling, and not photographs, is a com-
mon memory-making practice for Amish culture).
These scenarios illustrate the importance of respect
for the variation among beliefs and faith practices
regarding the need for ongoing bereavement
support.11,13,24,36,37
EVALUATION DATA ON BEREAVEMENT
PROGRAM
Parent Survey Feedback
NICU bereaved parent surveys are sent via postal
mail, with paid return envelope, to the parents
13 months after their infant’s death—1 month after
the 12 months of follow-up care has ended. Along
with a personalized letter, using parent(s)’ and
infant(s)’ names, the survey consists of questions
regarding whether they were given the information
and support they needed at the time of their infant’s
death, and beyond. Parents are given the opportu-
nity to remain anonymous (signature optional).

BOX 2. Ongoing Cards and Calls—Staff Guidelines and Resources

• Your caring and dedication to bereaved NICU families is appreciated. We have learned from surveys that
the parents highly value receiving their follow-up calls and cards from somebody they know personally who
shared in their neonatal bereavement experience. You are the person who knows them, knew their baby, and
can help them in the days, weeks, and months ahead as they grieve the loss of their precious child.
• Each situation is unique, but the guideline for ongoing staff calls is to make the first call within 3-4 weeks of the
baby’s death, then as needed and requested by the family. Continue contacts for at least 1 year after the loss,
calling and sending cards and information on anniversary dates and holidays.
• The initial call includes questions regarding keepsakes received by the family and how they are coping with
their loss at this early stage in their grief.
• Offer parent-to-parent bereavement support and encourage them to attend the monthly hospital support
group and the annual memorial service.
• RTS information regarding phases of bereavement is included in your follow-up information and reveals that
some parents’ grief tends to peak 4 months after the loss, with many showing intense distress at 9 months. It
is important to be aware of this, keeping in mind that each family’s experience and response is unique.
• Record all cards and contacts in patient’s electronic chart. If there is no response after several attempts (with
messages) to contact a family, continue sending cards on holidays and anniversary dates. If a parent requests
no further contact, chart this and discontinue attempts.
• You are welcome and encouraged to attend the NICU Bereavement Care Team Meetings. And if we can as-
sist you in anyway, please do not hesitate to call (phone numbers given). Walking with parents on their grief
journey can be emotional for you, and we are available to support you. We can also help you with resources,
literature, counseling, and support referrals for bereaved parents, siblings, and grandparents.
Abbreviations: NICU, neonatal intensive care unit; RTS, Resolve Through Sharing.

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 NICU Bereavement Care and Follow-up Support for Families and Staff 7

TABLE 1. Parent Survey Quotes—Hospital and Follow-up Care

“Everyone was very helpful and sensitive to our needs. They met needs before we even knew we had the need.
The nurses were an amazing support! We were amazed when a nurse walked us to our car. And then delivered
pictures to our house so we’d have them for the funeral.”
“I love all the tangible things I have, even the cards from milestones he reached while in the NICU. When lives
are so short, everything means something.”
“The care for our babies was incredible from the pictures to the [impressions] of their tiny feet. We were treated
like parents and our babies were treated like they mattered.”
“[The nurse] suggested things like putting him on my skin and things that I was so in shock, I didn’t even con-
sider. Most helpful was when the nurse talked me through what was happening while it happened.”
“Adult-size bed in his room, so I could room-in and hold him the entire last night of his life. All of the hand/foot
print [impressions], face [impression], sibling bereavement kits, the hours the neo docs talked to us and cried
with us. We appreciated everything so much!”
“Felt like I wasn’t just another patient that passed through. [We] were in great hands.”
“No laundry services on the floor … we had run out of clothes and could not leave our baby … someone did our
laundry for us. I can’t begin to tell you what it meant to us to have clean clothes to wear.”
“The photos after our son had passed.”
“[The cards] are treasured … a blessing … very helpful.”
“It was nice to know how much they cared not only about our daughter, but for us, too.”
“Part of our son’s memories is you. It helps to ‘keep in contact’ and know he impacted people’s lives.”
“It seemed when time went on…no one remembered. They [NICU staff] did and it made me feel a lot better,
gave me a lot of comfort.”
“It was so nice to hear from [our nurse] and catch up … this is their job, but knowing they take time to call and
send cards means the world to us.”

From June 2011 through December 2016, 178
surveys were mailed representing all NICU deaths in
that period, unless parents had specified they desired
no further contact. One survey was sent to a family
who had experienced the deaths of multiple infants
in the same period (e.g., twins). Thirty-six surveys
were returned for a 20% response rate.
Parents responded to questions about their expe-
rience at the time of their infant’s death in the NICU,
with 34 of 36 indicating they felt they were treated
with understanding, care, and compassion. Two sur-
veys were left blank. Open-ended questions regard-
ing what was “most helpful” and “least helpful”
were unanimously positive (27 “most helpful”
responses, 2 “least helpful” responses, and 7 blank).
A sampling of parent feedback is shown in Table 1,
informing staff that their interventions were mostly
effective. Interestingly, 31 of 36 parents signed the
“optional signature” line, showing they prefer to be
identified by name.
There were 2 “least helpful” responses, the first of
which was in regard to the absence of laundry ser-
vices for parents in the NICU when they preferred to
stay at the bedside with their dying infant rather
than leaving the hospital to attend to their laundry
needs. Fortunately, they also stated that a staff mem-
ber recognized the need and washed their dirty laun-
dry for them. The second “least helpful” response
was as follows: “The photos after our son had
passed.” When contacted for clarification, this par-
ent stated that she was not prepared for what she
would see in the photographs. This feedback served
as a good reminder for staff to describe all keepsakes
in detail before the family receives them—before
they leave the hospital and/or before mailing them.
One of the most profound surveys was returned
blank, with a sticky note attached stating, “I am
sorry I cannot help you with this survey. I would
want to give you accurate information, but the day
our baby died seems like a blur.” This was a power-
ful message that this parent was not able to process
her feelings in the midst of her grief—and beyond—
whereas the other surveys revealed vivid memories
of every detail.
In response to follow-up supportive care ques-
tions, parents were also asked whether the ongoing
cards and contacts they received for the first 12
months after their infant’s death were helpful.
Twenty-seven of 36 parents answered “yes” to the
question regarding cards received, 0 answered “no”,
and 9 left this question blank. When asked “How do
you feel about the amount of contact you had with
the person who called you?,” 4 parents checked
“not enough,” 24 “just the right amount,” 1 “too
much,” and 7 left it blank. There were several unso-
licited parent responses to these questions, which are
illustrated in Table 1. In addition, 19 of 36 parents
(50%) personally named 1 or more staff member

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 8 Foam impressions - parent, sibling and infant hands.

and/or parent-to-parent volunteer(s), who sup- DISCUSSION

ported them in their grief journey.
Staff Survey Feedback
Sharing in the experience of an infant’s death can
have a significant impact on the staff, both person-
ally and professionally. 7,17,21,26-30 In September
2016, with the aim of obtaining general feedback,
the following survey question was e-mailed to all
NICU staff: “How meaningful do you feel your
bereavement support services are, both to families
and yourselves?” We specifically asked for
responses from any staff member who had pro-
vided bereavement care support services during the
past year—both in the hospital and/or the follow-
up phone/card support. Because there are several
disciplines involved in bereavement care in the hos-
pital before, during, and after each infant’s death,
response rates for infants are difficult to tabulate.
Responses were received from 10 nurses and 1
medical technician who were involved in 1 or more
in-hospital and/or follow-up bereavement care
interventions. The type of intervention differed for
each situation, based on the infant’s medical and
the family’s emotional needs.
Staff responses are shown in Table 2. The
responses were varied and gave insight into how
important it is for staff to feel a sense of “meaning”
in their practice with bereaved families. Not only
does staff feedback inform future supportive prac-
tices for their work with families, but also the need
for ongoing support in their caregiver role, as spe-
cifically communicated by 1 nurse, stating “I was
caught off-guard by the grief I felt.”
In this article we described our NICU bereavement
care program with the aim of providing other hospi-
tals an example of bereavement care during hospi-
talization and beyond. Scholarly literature about
NICU bereavement care programs is in its infancy,
yet what does exist clearly affirms their impor-
tance.17-20,22,23 The findings obtained from our NICU
bereaved parent survey underscores a growing rec-
ognition in the perinatal/neonatal palliative care
communities that providing formalized neonatal
bereavement care programs is needed to foster sys-
tematic, consistent services offered by trained staff.
We found that the majority of the parents who
completed our survey were very satisfied with the
NICU and post-NICU follow-up care provided by
our BCT and NICU staff. For example, parent feed-
back validated the importance of comprehensive
service delivery for making memories, which com-
ports with existing research, suggesting that making
memories is a central component of the experience
for parents during end-of-life neonatal care.38
Although the use of photography and clay hand/
footprints impressions is a fairly common practice
today, we introduce the use of impressions of family
members’ hands with the infant’s, and the infant’s
face impressions, as additional keepsake items that
can provide comfort to some parents.
In addition, a distinctive programmatic feature is
the 1-year duration post-death, individualized fol-
low-up care. We surmise that the added value of
intentionally matching those NICU staff who pro-
vided direct inhospital care before and/or during the

TABLE 2. Staff Survey Quotes—Sense of Meaning

“I told the Mom that it was an honor and privilege to care for her daughter and that I greatly appreciated being
able to be with her during the night.”
“Giving the baby one last bath and allowing the Mom & Dad to do something ‘normal’.”
“[Most helpful was the music therapist] providing soft music during the process.”
“It was good to help the father hold for the first time … and for the siblings to hold after life support had been
removed.”
“It made me feel like I was honoring the life of this baby by continuing to show him loving care, even after his
soul had left his earthly home.”
“I was caught off-guard by the grief I felt.”
“Being able to sign the [family sympathy] card seemed to help me feel closure.”
“My discussion with family and their appreciation helped for us to realize that we did everything we could for
their son.”
“As a male nurse, I was able to model for a young father how to hold and be close to the body of his deceased
child … I was also able to engage this family (including 2 sets of grandparents) in the sources of comfort they
have—family, spirituality, and future hopes for their child.”
“Being present at the removal of the vent and finally being able to hold the baby was helpful for me … watching
her peacefully slip away and knowing she didn’t suffer.”
“It’s nice to see the family moving on and growing in their updates … I am told [by the family] how much we all
are loved and appreciated for what we do.”

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 NICU Bereavement Care and Follow-up Support for Families and Staff 9

infant’s death event to bereaved parents may account
for the high satisfaction rate. This individualized
matching approach to follow-up bereavement care is
supported by the fact that more than 50% of the
parents who completed the survey specifically (and
nonsolicited) named their follow-up staff member
on the written survey.
The low response rate (20%) for our parent sur-
vey is consistent with others who have reported
similar rates for surveys conducted with bereaved
parents.38,39 As one of our respondents so mov-
ingly reported, some bereaved parents simply can-
not emotionally bring themselves to complete a
survey. Despite the potential for this limitation,
obtaining feedback from parents (and developing
better ways to increase response rates) is essential
to program evaluation and quality improvement.
Parent feedback underscores the need for parents
to hear from NICU staff and acknowledge the
family’s profound loss in the days, weeks, and
months after their infant’s death, suggesting
encouragement to continue practices that help
bereaved parents navigate their grief journey.5,11,24
The BCT has discussed modifications in our sur-
vey procedure, such as sending an e-mail survey
with a link (when an e-mail address is available) or
an online, confidential survey via the hospital por-
tal, to achieve higher response rates.
Our informal, 1-item staff survey specifically
asked them to describe their “sense of meaning” in
providing this service to families, which is an
important consideration when developing support
services for staff who can experience distress when
faced with end-of-life NICU events.26,40 At HDVCH,
confidential employee assistance program counsel-
ing and hospital-run debriefing services41 are avail-
able. To recognize and reinforce the value of the
staff person’s skilled, caring practice with bereaved
families, the BCT leaders give small gestures of
gratitude, such as an individualized appreciation
card signed by one’s peers and a nurturing gift of
homemade soap. The HDVCH NICU bereavement
team is also exploring ways to formalize one-to-one
staff peer mentoring, and several staff members
have expressed interest in becoming involved in
this new, formal initiative. The collective prelimi-
nary feedback we sought from our NICU staff war-
rants further empirical study. Still, the respondents’
comments (primarily from nurses) illuminated the
intensity of this unique, supportive relationship
between parents and staff during and after a NICU
infant’s death.

Summary of Recommendations for Practice and Research

What we know:
What needs to be studied:
What we can do today:
• Four in 1000 infants die in the first 28 days of life in the United States. Twenty-five
percent are premature and low birth weight, with birth defects at 20%.
• The experience of a neonatal death can be devastating for families and staff.
• Supporting families during and after their infant’s death is important to their grief
journey.
• Listening to the voices of bereaved parents provides invaluable information for
reinforcement of current practices as well as potential future practice changes.
• Follow-up emotional support after NICU deaths via family- and staff-centered
partnerships is paramount to healthy expressions of grief for all who are intimate-
ly involved.
• The long-range effect of NICU deaths on bereaved families.
• Impact of neonatal death on the interdisciplinary NICU team.
• How unique circumstances can affect varying emotional reactions to NICU death
by families and staff.
• Effectiveness of varying methods of support for families and staff (ie, support
groups, debriefing sessions, counseling, peer support, and the family-staff part-
nership) as a means for collective healing.
• Provide NICU-bereaved family members with keepsakes (photos, cards, impres-
sions) at the time of their infant’s death.
• Address the unique emotional needs of parents, siblings, and other family mem-
bers as they, too, experience grief in their unique way.
• Listen to the voices of bereaved NICU families during and after their loss, offering
choices and support to meet their unique needs.
• Be sensitive to cultural, diverse backgrounds affected by the loss of an infant, and
the fact that individuals respond differently.
• Provide follow-up support for families after their NICU infant’s death, using an
organized administrative infrastructure. It is of great comfort to families that car-
egivers remember each infant and their unique experience.
• Look for ways to address nurse/staff grief after they experience the death of an
NICU infant.

Advances in Neonatal Care • Vol. 00, No. 00

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ANC-D-17-00013.indd 9 16/10/17 5:39 PM

 10 Foam impressions - parent, sibling and infant hands.
SUMMARY
The most profound and rewarding message con-
veyed by both bereaved NICU families and staff was
the desire to find meaning amidst the heartbreak
when an infant dies. The mutual sharing of grief in
the hospital, and the individualized follow-up for at
least 1 year, provided a collective healing between
families and staff. The voices of a nurse and a parent
echo the sentiment of this unique partnership:
The support we gave one another during this diffi-
cult time, not only here in the hospital but outside
the unit and for the following year [was very mean-
ingful] with cards, visits, attending funeral and dedi-
cation service … the friendship we have created and
how we can share positive memories of our time
together in the NICU!—NICU Nurse
We relive every moment in the hospital … Our mem-
ories focus on our son but are made sweet with the
relationships we have formed … The greatest mem-
ory we cherish occurred just after he died … [as the
nurse prepared his body for pictures] … I saw my
son in the hands of someone who cared … and doing
it with such gentleness and grace that I am moved to
this day … We are thankful that you are there willing
and able to walk this path [with us] … Your actions
bring light to new wisdom and help to mend wounds
… We pray that you will know your importance in
the lives you encounter.—Bereaved NICU Parent
Acknowledgment
The authors acknowledge, honor, and appreciate
bereaved NICU families who teach and inspire us to
provide meaningful family-centered practice.
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