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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-
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
natal staff is made up of a special kind of people, in the NICU, comprehensive bereavement services
angels, and I appreciate every single thing they have that include staff training and well-defined family
done with all of my heart. I’m thankful I had them support practices are imperative.3-5
and that [my baby] had such wonderful people tak- In the past 50 years, the notion of providing
ing care of him.” bereavement support to parents has garnered increas-
The death of a child has been defined as “particu- ing attention. A 40-year review of the perinatal litera-
larly intense, complicated and long-lasting for par- ture, from 1966 to 2006, focused on parental experi-
ents.”1 In the United States, 4 in 1000 infants die in ences with stillbirth and early infant death, primarily
the first 28 days of life, with the most common in the hospital, with encouragement to facilitate pro-
causes being prematurity and/or low birth weight at vision of photographs, memorabilia, and/or follow-
25% and birth defects at 20%.2 Bereaved families in 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
Author Affiliations: Spectrum Health Helen DeVos Children’s Hospital,
Grand Rapids, Michigan (Mss Levick, Fannon, and Bodemann); and
behaviors are helpful or harmful to families.7 By the
School of Social Work, Rutgers, The State University of New Jersey, 1980s, there was greater recognition that parents
New Brunswick (Dr Munch). benefitted from comprehensive bereavement prac-
Work Occurred at Spectrum Health Helen DeVos Children’s Hospital tices such as seeing and holding their infant, photo-
NICU.
Supported by Spectrum Health Helen DeVos Children’s Hospital.
graphs, lock of hair, and other memorabilia.8-11A
The authors declare no conflict of interest. more recent review of the literature published in 2010
Correspondence: Judy Levick, MSW, ACSW, LMSW, Spectrum by the American Academy of Pediatrics revealed
Health Helen DeVos Children’s Hospital, 100 Michigan St, N.E., MC 35, qualitative descriptions of best practices for end-of-
Grand Rapids, MI 49503 (jklev8@gmail.com).
life neonatal intensive unit (NICU) care, along with a
Copyright © 2017 by The National Association of Neonatal Nurses
call for empirical studies.12 There is also an increase in
DOI: 10.1097/ANC.0000000000000435 international reviews, which echo similar results and

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2 Levick et al

recommendations, exploring parent and provider HELEN DEVOS CHILDREN’S HOSPITAL


perceptions,13-15 highlighting the need for emotional BEREAVEMENT CARE PROGRAM
support for parents and staff training.8,11,12,14,15
The current literature, as part of the pediatric and Setting
perinatal palliative care movements, which has Spectrum Health Helen DeVos Children’s Hospital
emerged in the past 5 to 10 years, continues to call (HDVCH)31 is a level IV, 108-bed regional NICU,
for formalized bereavement care programs.16-19 The which admits 1400 infants each year. The primary ser-
palliative care movements have pushed for more vice area encompasses 35 counties in West Michigan.
attention to end-of-life care, particularly in terms of There is an average of 30 infant deaths per year, and
designating certain healthcare providers, roles and the primary causes of death are extreme prematurity
protocols—not just in terms of decision-making, but and congenital anomalies. Institutional support is
bereavement care, too.17,20-23 Much of the qualitative essential for the success of any bereavement care pro-
literature includes suggested practices at the time of gram.3,18 HDVCH NICU has a long history of admin-
the infant’s death, including a list of keepsakes or istrative commitment to offering and expanding
memorabilia ideas, including prints and clay impres- bereavement services to families and providing staff
sions of the infant’s hands and feet.3,5,10,12,20,24 To support, both financially and philosophically.
date, there are no published recommendations for
plaster impressions of the infant’s facial features or Bereavement Care Team
impressions of other family members’ hands. The NICU Bereavement Care Team (BCT) leadership
The literature advocates the importance of fol- consists of a social worker and 2 nurse leaders, one of
low-up emotional support for bereaved parents, yet whom is a bereaved parent. They each have over
remains vague in terms of who specifically provides 20 years of experience in bereavement care, bedside
this service or a recommended length of time.9,11,16,24 nursing and social work roles, and 2 also coordinate
Even when a length of time is specified, it is unclear the comprehensive parent-to-parent partnership,
whether the hospital support staff providing the which uses trained volunteer former NICU parents to
follow-up contact is someone who knew the family support new NICU parents as peer mentors.32 The
intimately during the NICU hospitalization or an interdisciplinary BCT, chaired by the nurse and social
anonymous bereavement provider.3,25 Interestingly, work leaders, meets bimonthly to discuss quality
as early as 1984, White et al10 stated that it was improvements on the basis of parent feedback and
“especially meaningful [for parents] to meet with staff experiences.
caregivers who had cared for their baby”; yet, the The nurse leaders provide ongoing, hands-on train-
authors did not describe a systematic NICU proce- ing and oversight for additional bereavement care
dure to ensure that this happens. staff specialists, who are primarily nurses. These nurse
In addition to providing bereavement support to leaders are notified when an infant death occurs, and
families, a growing body of literature focuses on the either come in from home or another assignment, to
importance of staff education and support during train bedside nurses to deliver care, prepare keepsakes,
and after the death event in the NICU setting.7,17,21,26-30 and help support the family. Once trained, nurses may
Comfort with NICU end-of-life care,17,21 debriefing not require this leadership assistance. In addition,
and peer support, 28,30 and encouraging a balance many HDVCH NICU staff members have received
between professional boundaries and intimacy with Resolve Through Sharing4 perinatal bereavement care
parents28 are examples of staff growth and develop- training. The social work and nurse leaders coordinate
ment initiatives reported. follow-up care for bereaved parents. Trained bereaved
Collectively, the literature to date is replete with parent-to-parent volunteers are also invited to share
neonatal/perinatal bereavement keepsake and ritu- their grief story and provide the parent perspective at
als information, yet scant documentation exists new nurse orientations.32
about standardized programs. Building upon the lit- In addition to the nurse and social work leaders,
erature, this practice-based article describes our neonatologists, nurses, social workers, pastoral care,
NICU bereavement care program, providing an and child life specialists are the frontline providers for
example of such a standardized program. We include end-of-life care. If requested, a music therapist pro-
accounts of bereaved parents and NICU staff, and vides soft background music and offers heartbeat
highlight a novel program feature: its focus on inten- recordings set to music chosen by the parents. This
tional, individualized matching for follow-up emo- interdisciplinary team helps the family navigate their
tional support for at least 1 year. Special attention is last moments with their child.
also given to staff experiences with infant death—
the emotional impact on staff, their sense of mean- Parent and Family Care Before and After
ing, their need for continued support, and the impor- an Infant’s Death
tance of their ongoing involvement with bereaved Offering parents choices while gently educating and
families for mutual healing. guiding them through their unique grief experience

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NICU Bereavement Care and Follow-up Support for Families and Staff 3

is the defining goal of this program—helping them “It’s all we have” (to remember our baby), and
say goodbye before they barely had the chance to say another said, “Everything means something.”
hello to their newborn. They are encouraged to Children deserve special attention when their
bring siblings and invite loved ones to the NICU infant sibling dies. The NICU experience in itself can
bedside. Grandparents, other extended family, close be traumatic, but the unique loss of one’s sibling can
friends, and clergy are welcome to participate, add additional stress, confusion, and anxiety.
depending on the parents’ wishes. Depending on their age, developmental stage, and
Offering parents the opportunity to hold and bathe level of involvement, siblings’ grief responses need to
their infant can be very meaningful and a way for be monitored and honored.33,34 An 8-year-old
them to nurture their infant as they say goodbye. In bereaved sibling shared in a letter, “I remember
addition, preserving the infant’s bedside environment when my brother was born … I held him … I remem-
until the parents are ready to remove items is very ber getting stones at the grave … I remember his hair
important to ensure they have closure. The parents was curly.” Moreover, having preestablished con-
may choose (or ask staff) to remove photographs, tacts with siblings during the hospitalization helps to
milestone signs, and other tangible memories at their facilitate the work the BCT provides at the time of
infant’s bedside. It is important to remember that this death. At HDVCH NICU, siblings are welcome in
hospital space will become embedded in their minds the NICU at any time; we offer sibling support pro-
forever as their infant’s first (and only) “nursery,” and grams,33-35 and the child life specialists host a weekly
not to rush the process of saying goodbye. “Super Sibs” pizza party with age-appropriate activ-
Keepsakes, offered with written parental permis- ities. If the children have been involved in NICU sib-
sion, enable families to remember the short time ling activities and regularly scheduled time with
with their precious child.3-5,24 When parents are their sibling in the NICU, they are already immersed
uncertain about the potential value of keepsakes, the in the NICU milieu and reasonably comfortable
following talking points are used by staff to help with its surroundings and staff. The interdisciplinary
illustrate these benefits: “We have learned from teams—nurses, child life specialists, social work-
other families that this can be helpful to their grief ers—often have made a connection with the sibling,
over time” and “I can make the keepsakes today and so that when death occurs, they are in a prime posi-
hold onto them, in case you change your mind.” In tion to attend to the unique emotional needs of each
fact, one family requested their infant’s keepsakes sibling during the death/bereavement events.
2 years later. The bereavement/keepsake checklist
(Box 1) provides an organized, helpful list of PARENT AND FAMILY FOLLOW-UP CARE
bereavement support reminders for staff, along with
a list of keepsakes to prepare for the bereaved NICU At the time of the infant’s death, parents are informed
family members. This checklist was developed for that a staff member will be reaching out to them in
the staff by the BCT to have a clear plan to follow the days ahead, unless they state a preference to not
during this highly charged emotional time. receive this contact. A sympathy card is initiated by
It is important to offer parents the opportunity to one of the BCT nurse leaders, signed by staff across
help with the ink footprints, foam, and/or alginate the NICU interdisciplinary team, and sent to the
plaster impressions, which requires one person to bereaved family within 2 weeks after their infant’s
hold the infant while a second person gently guides death. Comforting words with personal, individual-
the infant’s body into the foam or alginate. Every ized messages and memories specific to their infant
parent is different in their desire to help, and most are written on each card, such as the following: “I
help in some capacity (e.g., actually creating the am heartbroken for your loss. Getting a smile or
keepsakes), holding their infant while the staff does babbling out of her made my day” and “I enjoyed
impressions. If not, parents are asked whether they working on reaching for her toys.”
want to be present while impressions are made. A The neonatologist who was most involved in the
distinctive aspect of our program is the offer of par- infant’s care attempts a call to the parents 2 to
ent and/or sibling hand impressions to be displayed 3 weeks after the infant’s death, offering a family
with the infant’s, as well as face profile impressions conference and answering medical questions the
of the infant, all of which bring the parents and fam- family might have. Autopsy results are also shared
ily members comfort, as another memory of their when requested. One parent shared on her survey
infant (Figures 1-4). It is important to mention that that she appreciated the neonatologist’s 2 attempts
when the face profile impressions were first intro- to call, finding the voicemail messages comforting—
duced, the staff’s reaction was guarded, wondering even though she did not feel a need to talk with him.
whether this would be uncomfortable for the par- The ongoing telephone follow-up by the intention-
ents. Over time, staff has learned from parents who ally designated staff member begins after 3 weeks, a
have shared their overwhelming interest in creating time frame that was suggested by former bereaved
this additional keepsake item. As one parent stated, 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 months, unless a family has specifically requested to
situations, the infant’s designated primary care nurse, not receive further contact. The amount and fre-
and/or another nurse who was intimately involved in quency of contacts are determined by individual fam-
the care, makes the calls. This individualized approach ily needs. Information and guidelines for the follow-
is intentional, as it provides emotional support, edu- up provider are shared in Box 2. In addition, the
cation, and as-needed referrals for each bereaved neonatologist sends a card 11 months after their loss,
family with the nurse(s) who personally provided pri- in anticipation of the 1-year anniversary date.
mary care and/or bereavement care in the NICU. The administrative infrastructure to support the
Cards are sent and calls attempted for at least 12 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 contacts and cards, and informs the BCT leader if
spreadsheet that includes the infant’s date of birth, unable to fulfill the 12-month commitment, at
date of death, parents’ address and phone number, which time the BCT leader assesses the family’s
dates for sympathy cards, keepsakes, and the tim- ongoing needs and finds an appropriate substitute.
ing of the follow-up parent survey about the pro- The neonatologists’ administrative assistant
gram. The name of follow-up support staff respon- reminds the neonatologist to call the parents 2 to 3
sible for the follow-up and reminders of the time weeks after their infant’s death, and sends the
frames to complete are also included. The follow- 11-month card personally signed by one or more
up support staff is responsible for continuing 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 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
Alginate impressions - infants’ face profile.
EVALUATION DATA ON BEREAVEMENT
PROGRAM
Cultural and Religious Variations in All Parent Survey Feedback
Aspects of Bereavement Care NICU bereaved parent surveys are sent via postal
Sensitivity to each family’s cultural, spiritual, and mail, with paid return envelope, to the parents
religious beliefs and practices at the time of their 13 months after their infant’s death—1 month after
infant’s death, and beyond, is paramount to building the 12 months of follow-up care has ended. Along
supportive relationships and helping the families to with a personalized letter, using parent(s)’ and
find meaning when the unthinkable has hap- infant(s)’ names, the survey consists of questions
pened.24,36,37 One mother shared that, upon her regarding whether they were given the information
request, a nurse prayed with her at the bedside and and support they needed at the time of their infant’s
helped her cherish the last moments she had with her death, and beyond. Parents are given the opportu-
infant. Another family member communicated that 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 passed.” When contacted for clarification, this par-
surveys were mailed representing all NICU deaths in ent stated that she was not prepared for what she
that period, unless parents had specified they desired would see in the photographs. This feedback served
no further contact. One survey was sent to a family as a good reminder for staff to describe all keepsakes
who had experienced the deaths of multiple infants in detail before the family receives them—before
in the same period (e.g., twins). Thirty-six surveys they leave the hospital and/or before mailing them.
were returned for a 20% response rate. One of the most profound surveys was returned
Parents responded to questions about their expe- blank, with a sticky note attached stating, “I am
rience at the time of their infant’s death in the NICU, sorry I cannot help you with this survey. I would
with 34 of 36 indicating they felt they were treated want to give you accurate information, but the day
with understanding, care, and compassion. Two sur- our baby died seems like a blur.” This was a power-
veys were left blank. Open-ended questions regard- ful message that this parent was not able to process
ing what was “most helpful” and “least helpful” her feelings in the midst of her grief—and beyond—
were unanimously positive (27 “most helpful” whereas the other surveys revealed vivid memories
responses, 2 “least helpful” responses, and 7 blank). of every detail.
A sampling of parent feedback is shown in Table 1, In response to follow-up supportive care ques-
informing staff that their interventions were mostly tions, parents were also asked whether the ongoing
effective. Interestingly, 31 of 36 parents signed the cards and contacts they received for the first 12
“optional signature” line, showing they prefer to be months after their infant’s death were helpful.
identified by name. Twenty-seven of 36 parents answered “yes” to the
There were 2 “least helpful” responses, the first of question regarding cards received, 0 answered “no”,
which was in regard to the absence of laundry ser- and 9 left this question blank. When asked “How do
vices for parents in the NICU when they preferred to you feel about the amount of contact you had with
stay at the bedside with their dying infant rather the person who called you?,” 4 parents checked
than leaving the hospital to attend to their laundry “not enough,” 24 “just the right amount,” 1 “too
needs. Fortunately, they also stated that a staff mem- much,” and 7 left it blank. There were several unso-
ber recognized the need and washed their dirty laun- licited parent responses to these questions, which are
dry for them. The second “least helpful” response illustrated in Table 1. In addition, 19 of 36 parents
was as follows: “The photos after our son had (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.
In this article we described our NICU bereavement
Staff Survey Feedback care program with the aim of providing other hospi-
Sharing in the experience of an infant’s death can tals an example of bereavement care during hospi-
have a significant impact on the staff, both person- talization and beyond. Scholarly literature about
ally and professionally. 7,17,21,26-30 In September NICU bereavement care programs is in its infancy,
2016, with the aim of obtaining general feedback, yet what does exist clearly affirms their impor-
the following survey question was e-mailed to all tance.17-20,22,23 The findings obtained from our NICU
NICU staff: “How meaningful do you feel your bereaved parent survey underscores a growing rec-
bereavement support services are, both to families ognition in the perinatal/neonatal palliative care
and yourselves?” We specifically asked for communities that providing formalized neonatal
responses from any staff member who had pro- bereavement care programs is needed to foster sys-
vided bereavement care support services during the tematic, consistent services offered by trained staff.
past year—both in the hospital and/or the follow- We found that the majority of the parents who
up phone/card support. Because there are several completed our survey were very satisfied with the
disciplines involved in bereavement care in the hos- NICU and post-NICU follow-up care provided by
pital before, during, and after each infant’s death, our BCT and NICU staff. For example, parent feed-
response rates for infants are difficult to tabulate. back validated the importance of comprehensive
Responses were received from 10 nurses and 1 service delivery for making memories, which com-
medical technician who were involved in 1 or more ports with existing research, suggesting that making
in-hospital and/or follow-up bereavement care memories is a central component of the experience
interventions. The type of intervention differed for for parents during end-of-life neonatal care.38
each situation, based on the infant’s medical and Although the use of photography and clay hand/
the family’s emotional needs. footprints impressions is a fairly common practice
Staff responses are shown in Table 2. The today, we introduce the use of impressions of family
responses were varied and gave insight into how members’ hands with the infant’s, and the infant’s
important it is for staff to feel a sense of “meaning” face impressions, as additional keepsake items that
in their practice with bereaved families. Not only can provide comfort to some parents.
does staff feedback inform future supportive prac- In addition, a distinctive programmatic feature is
tices for their work with families, but also the need the 1-year duration post-death, individualized fol-
for ongoing support in their caregiver role, as spe- low-up care. We surmise that the added value of
cifically communicated by 1 nurse, stating “I was intentionally matching those NICU staff who pro-
caught off-guard by the grief I felt.” 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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ANC-D-17-00013.indd 8 16/10/17 5:39 PM


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

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

Summary of Recommendations for Practice and Research


What we know: • 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.
What needs to be studied: • 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.
What we can do today: • 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.

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