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Journal of Neonatal Nursing (2015) xxx, xxxexxx

www.elsevier.com/jneo

ORIGINAL ARTICLE

An Effective Communication Initiative:


Using parents’ experiences to improve the
delivery of difficult news in the NICU
Kristy Macdonell, MSW, RSW, Social Workera,b,*,
Danielle Omrin, MSW, RSW, Social Workera,b,
Kasia Pytlik, MSW, RSW, Social Workera,b,
Sam Pezzullo, A parent that had a baby in the NICUa,
Marianne Bracht, RN, RSCN, Parent Resource Nursea,
Yenge Diambomba, MD, FRCPC, Clinican/Teachera

a
Neonatal Intensive Care Unit, Mount Sinai Hospital, 600 University Avenue,
Toronto, ON M5G 1X5, Canada
b
Social Work Department, Mount Sinai Hospital, 600 University Avenue, Toronto,
ON M5G 1X5, Canada

Available online - - -

KEYWORDS Abstract Objective: Enhance the quality of communication between parents and
Infant; neonatal intensive care unit (NICU) staff.
Premature; Methods: Parents of preterm infants and staff designed and implemented in-service
Neonatal intensive training regarding the parent perspective on the impact of poor communication in the
care unit; NICU. Gaps in the experience/needs of staff around delivering bad news were exam-
Communication; ined using a questionnaire and addressed by improving unit procedures.
Parents; Results: Most NICU staff, regardless of their role, years in healthcare, and experi-
Family-centered care; ence/confidence with delivering difficult news to families, indicated a need for more
Bad news support and training. Improvements to unit procedures included holding family meet-
ings soon after an infant’s birth, including all members of the infant’s healthcare team
in family meetings, providing clinical fellows with training on delivering bad news, and
documenting discussions in family meetings for everyone’s reference.

Abbreviations: NICU, neonatal intensive care unit.


* Corresponding author. Social Work Department, 600 University Avenue, Toronto, ON M5G 1X5, Canada. Tel.: þ1 416 586
4800x5213.
E-mail address: kmacdonell@mtsinai.on.ca (K. Macdonell).

http://dx.doi.org/10.1016/j.jnn.2015.01.002
1355-1841/ª 2015 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.

Please cite this article in press as: Macdonell, K., et al., An Effective Communication Initiative: Using parents’ experiences to
improve the delivery of difficult news in the NICU, Journal of Neonatal Nursing (2015), http://dx.doi.org/10.1016/
j.jnn.2015.01.002
2 K. Macdonell et al.

Conclusion: Incorporation of parent experiences of communication in the NICU is


effective in addressing challenges associated with delivering difficult news.
ª 2015 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.

Introduction opportunity to become partners in the planning,


development, and evaluation of programs to
The environment of the neonatal intensive care address ongoing NICU issues). From the initial
unit (NICU) is extremely overwhelming, especially meeting, it was evident that the quality of
for parents who are already under stress and communication between healthcare professionals
grieving due to their infant’s unexpected admis- and parents and even among healthcare pro-
sion, critical illness, or difficult start to life. As fessionals themselves needed to be improved.
such, the use of a family-centered care approach Based on the concerns that veteran parents raised,
that directly involves parents in their infant’s care healthcare professionals felt that they were at
is a critical component of NICU care (Gooding times unequipped to deliver difficult information
et al., 2011). One of the cornerstones of family- to families. Further, the nursing staff felt inade-
centered care is effective communication and in- quately equipped to support families at the
formation exchange, which facilitates mutual un- bedside and expressed that this was largely a
derstanding and collaborative decision making result of not being consistently included in family
between parents and medical professionals, and meetings where medical updates are discussed
ensures that care is responsive not only to the with parents, primarily by the staff physician.
family’s unique needs, circumstance, and values, These concerns reinforced the necessity of an
but to the infant’s best interests (Gooding et al., Effective Communication Initiative working group
2011; Bruns and Steeples, 2001; Carter and to improve and foster more effective communi-
Maroney, 2003). Effective communication is cation practices in the NICU.
particularly important in the delivery of difficult The Effective Communication Initiative working
news as poor communication can add significantly group then reviewed the existing literature to
to parents’ feelings of grief (Armentrout and better understand the principles of effective
Cates, 2011; Laing and Freer, 2008). Unfortu- communication in the NICU. Many of the recom-
nately, training and strategies for effective mendations were developed by understanding
communication with families are inconsistently parents’ perspectives and what they perceive to
implemented and many physicians feel poorly be helpful or not during end-of-life care (Bruns and
prepared to deliver bad news in the NICU (Harrison Steeples, 2001; Armentrout and Cates, 2011;
and Walling, 2010). Wocial, 2000). Overall it has been found that how
As a NICU that aspires to provide the best in information is communicated greatly influences
family-centered care, this article describes how parent’s perspectives of their interactions with
we developed and implemented an ‘Effective providers and their confidence and trust in the
Communication Initiative’ in our unit to enhance care they are receiving (Wocial, 2000; Ptacek and
the level of care and quality of communication Eberhardt, 1996). In times of distress, parents
between parents and staff in our facility. often recount that being surrounded by calm pro-
fessionals who displayed empathy and genuine
Principles of effective communication in the emotions was appreciated because it signified that
NICU their baby was valued and had an effect on other
lives (Armentrout and Cates, 2011; Wocial, 2000;
Henley and Schott, 2008). Parents report that
The first step in developing the Effective Commu-
they want information to be delivered in a
nication Initiative was the formation of a working
comprehensible and consistent manner and they
group of parents and healthcare professionals
want to be included in the decision-making process
interested in creating collaborative strategies for
and end-of-life care (Armentrout and Cates, 2011).
delivering difficult news to families. All parents
Respect and responsiveness to the family’s well-
involved had the experience of having an infant in
being, preferences, and cultural values is also
the NICU (i.e., veterans) and were part of our
Parent Advisory Committee (a parent-led group imperative when delivering services under the
family-centered model, as it provides an oppor-
with staff support that provides parents with the
tunity to develop a trusting and respectful

Please cite this article in press as: Macdonell, K., et al., An Effective Communication Initiative: Using parents’ experiences to
improve the delivery of difficult news in the NICU, Journal of Neonatal Nursing (2015), http://dx.doi.org/10.1016/
j.jnn.2015.01.002
Communication with families in the NICU 3

relationship (Bruns and Steeples, 2001; Lundqvist then the delivery of information may be delayed or
et al., 2002). the level of care the next patient receives may be
Memories related to dissatisfaction with the negatively impacted (Statham and Dimavicius,
care received have been found to remain for a 1992). However, when education and training on
lifetime (Laing and Freer, 2008; Lundqvist et al., communication is specific to the NICU setting,
2002) and influence future relationships with professionals often provide self-evaluations that
health professionals (Bruns and Steeples, 2001). demonstrate their improved perceptions of confi-
Giving parents limited information and choices, as dence, preparation, and communication skills,
well as communicating ineffectively, prevents regardless of their discipline, years of experience,
parents from perceiving themselves as in control or previous learning opportunities (Meyer et al.,
and involved in their infant’s care, thereby 2011). This demonstrates the significant impact
furthering their distress levels (Armentrout and that specialty-specific training on communication
Cates, 2011), feelings of powerlessness and relational capacities has on members of a
(Lundqvist et al., 2002), and fear of not meeting health care team (7), not only for learning pur-
their obligations as parents (Wocial, 2000). On the poses, but also to positively influence individual
other hand, receiving support, encouragement, and team practice models related to family-
and empathy from the health care team can foster centered care.
feelings of empowerment in parents and confi-
dence to make decisions about the care of their In-service training to stimulate discussion of
child (Lundqvist et al., 2002).
effective communication
Despite recommendations on how to deliver bad
news in the NICU, studies indicate that many staff
Following the literature review, the working group
physicians and neonatology fellows receive little
discussed how difficult news was delivered within
training on effective communication (Boss et al.,
our NICU and elicited input from the NICU care
2009; Dube et al., 2003; Rider et al., 2008). For
team and other parents. This discussion produced
example, Boss et al. (2009) assessed the level of
a collection of stories and narratives gathered
training in interpersonal and communication skills
from the veteran parents on the Effective
that graduating neonatology fellows received (83%
Communication Initiative working group and other
were from accredited US programs), as well as
parents in the NICU that was used to develop in-
their perceived competence in facilitating
service training. Within the training, role-plays,
decision-making conversations with parents. While
story-telling, and pictures/video were used to
the majority of fellows indicated that they
dramatize real parent experiences in the NICU and
received “a lot of training” in the medical man-
provide an opportunity for NICU healthcare pro-
agement of extremely preterm (96%) or dying in-
fessionals to understand the parent perspective.
fants (89%), 41% reported that they did not receive
The in-services lasted approximately one hour and
formal training in communication skills and 75%
included a twenty-five minute sharing of the fam-
never participated in relevant role plays or patient
ilies’ experiences followed by an open group dis-
simulations. Fellows also reported that they felt
cussion. The discussion entailed exploring
inadequately trained to resolve conflicts around
different methods of delivering difficult news with
goals of care. Difficulty with conflict resolution
clarity and empathy, as desired by parents. The in-
raises concern around achieving collaborative
services were held every other month over 18
decision-making, which is a core principle of
months and attendance regularly reached more
family-centered care (Cooper et al., 2007), since it
than 40 staff members.
plays a key role in building trust with families and
improving their overall satisfaction with the level
of end-of-life care (Brosig et al., 2007). Feedback regarding delivering difficult news
Researchers have also found that lack of edu- and the in-service training
cation in effective communication contributes to
the difficulty that physicians experience when During the development of our Effective Commu-
delivering difficult news by heightening feelings of nication Initiative, it became apparent that phy-
anxiety, fear, or stress in anticipation of conveying sicians and allied health members in our NICU had
the information, particularly with regards to the similar concerns and anxieties about the delivery
physician’s previous experiences, their perception of difficult news to those often reported in the
of the severity of the news, and whether they literature. It was also apparent that a sustainable
think they are responsible (Ptacek and Eberhardt, effective communication program was required
1996). Further, if stress levels become too high, that was responsive to the needs of the healthcare

Please cite this article in press as: Macdonell, K., et al., An Effective Communication Initiative: Using parents’ experiences to
improve the delivery of difficult news in the NICU, Journal of Neonatal Nursing (2015), http://dx.doi.org/10.1016/
j.jnn.2015.01.002
4 K. Macdonell et al.

professionals in the NICU. Following provision of Feedback on the in-service training indicated
the in-service training, we distributed question- that the expressive role-plays, parent involve-
naires to all members of the healthcare team to ment, and candid dialogue and exchange of in-
identify gaps in their experiences and their needs formation between parents and professionals were
with regards to delivering bad news. The ques- well received. As reported by one staff member,
tionnaire included questions on how much experi- the role-plays allowed staff to experience first-
ence (None/Some/Lots/Extensive) and how hand the impact they can have on families: “[The
confident (Not at all/Somewhat/Very/Extremely) in-service] gave me a lot of insight about what it is
staff members were in providing difficult or bad like to be a parent in the NICU. Every nurse should
news to families, the level of previous training attend this session.” Another comment summa-
received in delivering bad news (hours and method rized the fact that the sessions also provided par-
of delivery), how helpful staff thought it would be ticipants with a rich experience to truly feel and
to receive more training (Not at all/Somewhat/ empathize with the parent’s portrayal of their
Very/Extremely), and feedback on the in-service experiences as emotions could be felt and heard:
training. “.seeing [the parents’] emotions helps me to put
All of the staff physicians, allied healthcare my care and priorities e family-nurse relationship
professionals (e.g. social workers, lactation e into perspective.” The training also offered a
consultant, infection control practitioner, clinical means for professionals to reflect on their practice
care manager, dietician), and respiratory thera- and consider how they can improve their future
pists responded to the questionnaire along with interactions by using the recommendations from
over 50% of the nurses. The responses to the parents and the ideas that arose out of the dis-
questionnaire identified that the majority of staff, cussions: “It is very sobering listening to parents’
regardless of their role, number of years spent experiences and their interpretation of the in-
working in health care, and level of experience formation that we convey/share with them. All
and confidence with delivering difficult news to staff members can learn from these powerful
families, indicated that it would be ‘very’ or sessions no matter how long they have been
‘extremely’ helpful to receive more support and practicing.”
training in this area. This included 7 out of 8 (88%) Our intention was to also provide a means for
staff physicians, 17 out of 20 (85%) medical resi- parents to feel empowered and to further
dents and fellows, 25 out of 26 (96%) allied health strengthen parent-professional partnerships within
professionals and 67 out of 77 (87%) nurses who our NICU. Veteran parents who participated posi-
responded to the questionnaire. While 14 out of 20 tively gained from it because it gave them a
(70%) medical residents and fellows had received chance to contribute and become involved with
prior training in delivering difficult news, only 4 something that was very tangible and true to their
out of 8 (50%) staff physicians, 5 out of 25 (20%) hearts. The positive feedback the parents
allied health professionals and 23 out of 77 (30%) received further validated their efforts and prac-
nurses had received any prior training. tical contribution to the medical field; such that
The level of experience and confidence with other NICU parents in the future may have better
delivering bad news also varied by role within the experiences around receiving difficult news as a
NICU team. All the staff physicians reported ‘lots’ result.
or ‘extensive’ experience and being ‘very’ or
‘extremely’ confident in delivering bad news. As Development of a framework and tools for
would be expected, the level of experience for delivering difficult news
residents and fellows was less and ranged from
‘none’ to ‘lots’. Confidence was also lower and The high attendance and feedback from the in-
ranged from ‘not at all’ to ‘very’ with only 6 out of service training along with the results of the
the 20 (30%) respondents indicating they were questionnaire indicated the need for a more
‘very’ confident with delivering bad news. For al- formal and sustainable process and tools to aid
lied health professionals, confidence was depen- NICU staff in effective communication and deliv-
dent on role, with 5 out of the 6 (83%) social ering difficult news. The Effective Communica-
workers but none of the respiratory therapists tions Initiative team worked with the NICU
indicating they were ‘very’ or ‘extremely’ confi- leadership to incorporate the lessons learned from
dent in delivering bad news. Approximately 40% (31 the in-service and questionnaire into practice
out of 77) of the nurses indicated they were ‘very’ within the NICU. Discussion around effective
or ‘extremely’ confident in delivering bad news. communication was integrated into medical

Please cite this article in press as: Macdonell, K., et al., An Effective Communication Initiative: Using parents’ experiences to
improve the delivery of difficult news in the NICU, Journal of Neonatal Nursing (2015), http://dx.doi.org/10.1016/
j.jnn.2015.01.002
Communication with families in the NICU 5

medical status, parent’s participation in the care


Table 1 Framework for delivering bad news.
of their infant and engagement in parent pro-
1.Establish a therapeutic relationship with parents
grams, as well as space for each core member of
before the need to deliver difficult information.
the infant’s care team to write an update/plan
2.Arrange a time and place that is comfortable for
the parents to ensure that parents feel well sup- moving forward. The family receives a copy of the
ported, respected, and provided with enough document at the end of the meeting so that they
privacy. have a written summary of the main areas of dis-
3.Ensure both parents or another significant sup- cussion. All of the staff physicians (10), clinical
port person is present when delivering difficult or fellows (4), Nurses (20) and allied health pro-
bad news. fessionals (7) involved in family meetings over that
4.Disclosure of information should be given as soon time period responded to the questionnaire. The
as possible in a compassionate yet factual manner. majority of staff, regardless of their profession,
Explore what the family already knows about the found the Family Meeting Template to be effective
medical condition or diagnoses to appropriately
at meeting healthcare professionals’ and families’
modify the language used and amount of detail
needs around improved communication and facil-
provided. Ensure that parents have ample time to
ask questions and offer the services of an inter- itation of family meetings. Specifically, staff indi-
preter if the family does not understand or speak cated that they either ‘strongly agreed’ or
English fluently. ‘agreed’ that the Family Meeting Template stan-
5.Support and encourage the expression of feel- dardizes the information provided to parents
ings, being mindful of individual and cultural dif- based on baby’s medical needs (medical team 78%,
ferences in reacting to bad news and in grieving. nursing 74% and allied health 86%); assists with
6.Provide meaningful statistics to support expla- developing an appropriate plan moving forward
nations and offer patient-friendly handouts or (medical team 71% nursing 74% and allied health
drawings that can be referred to at a later time. 100%); fosters easier communication between
7.Establish a “next steps plan” and be sure to
health care professionals and families (medical
follow through to ensure that parents continue to
team 57%, nursing 76% and allied health 86%);
be informed and supported.
benefits parents, medical professionals and allied
health professionals by providing written docu-
ment of the information shared at family meetings
rounds on a more regular basis and a framework (medical team 100%, nursing 98% and allied health
was created to assist health care professionals in 100%); and is an effective and time-efficient
delivering difficult news (see Table 1). method of completing documentation (medical
Key aspects of the framework include building a team 100%, nursing 100% and allied health 100%).
relationship with parents before the need to Additional feedback received confirmed these
deliver difficult information arises, ensuring that answers and provided additional information on
any family meeting includes both parents/and or a the staff response to the template. Some of the
support person and is held in a place that affords themes that emerged included comments such as
privacy with enough time for a full discussion. This “using this format assists with ensuring that all
also provides an opportunity to deliver news families are receiving consistent communication”
compassionately with full explanation and sup- and “having family meetings documented in this
porting information sources that can be referred to format assists with continuity of care.” Another
later by parents. This framework was formalized comment summarized the fact that “the template
by creating a template document for family allows professionals to access information easily
meetings that sets out how a family meeting as all documentation is recorded on one form.”
should be conducted and the way in which infor- Based on the positive reviews received, the Family
mation should be delivered and recorded to pro- Meeting Template is now a formal and legal
vide optimal support. document in our NICU, which is used consistently
when facilitating family meetings.
Use and evaluation of the Family Meeting
Template Putting what we learned into practice

The Family Meeting Template was used consis- In addition to the Family Meeting Template, new
tently at family meetings for 3 months and staff communication guidelines were created and
were then asked to complete a questionnaire implemented based on the suggestions from
regarding the usefulness of the template. The healthcare professionals and parents. One recom-
template includes information around the infant’s mendation is that family meetings should be

Please cite this article in press as: Macdonell, K., et al., An Effective Communication Initiative: Using parents’ experiences to
improve the delivery of difficult news in the NICU, Journal of Neonatal Nursing (2015), http://dx.doi.org/10.1016/
j.jnn.2015.01.002
6 K. Macdonell et al.

scheduled within two weeks of an infant’s birth so only serves to promote confidence around this
that families can meet the team and receive med- challenging and often neglected teaching area,
ical updates regardless of their infant’s condition. but reflects our commitment to supporting families
In addition, family meetings can provide clinical through collaboration and integration. Improve-
fellows and residents with a learning platform to ments to the delivery of difficult news is thus a
gain practical knowledge and skills around effective necessary starting point to ensure that medical
and empathic patient interactions and more confi- staff are well-informed of the parent’s point of
dence around delivering difficult information to view (Ptacek and Eberhardt, 1996) and feel confi-
parents. As such, clinical fellows are encouraged to dent in themselves to both communicate effec-
lead and facilitate family meetings with the staff tively and appropriately to support parents during
physician supervising. crises and difficult times.
NICU nurses in our unit are also now strongly NICU veteran parents played a crucial role in the
encouraged to attend family meetings and the implementation and delivery of the Effective
schedule of the infant’s primary nurse is taken into Communication Initiative. As ‘graduates’ of the
account when a family meeting is organized. Dur- NICU, veteran parents are invaluable contributors
ing morning medical rounds, the charge nurse is by providing their unique perspectives and insight
now required to take note of all the family meet- around effective communication, including their
ings scheduled for that day to ensure that nurses firsthand interactions with the health care team
attend and that nursing coverage is provided in during both good and difficult situations. The in-
their absence. When the primary nurse is unable to service by the veteran parents was an opportunity
attend, they are required to read the family for us to integrate pragmatic and realistic compo-
meeting document to receive a concise overview nents into training while enabling staff to receive
of the discussion that took place. immediate feedback from parents; strategies that
In addition to the infant’s physician and nurse, have been found to be effective in helping to address
other allied healthcare professionals in the in- communicative challenges associated with deliv-
fant’s care team are strongly encouraged to ering difficult news in the NICU (Meyer et al., 2011).
advocate for, schedule and/or attend routine Since a major component of effective communica-
family meetings as needed. This includes respira- tion is providing clear and concise information to
tory therapists, who are encouraged to participate families, this initiative also prompted us to design an
in family meetings so that they can observe how interactive curriculum that is connected to a formal
information is communicated, increase their level structure that emphasizes ongoing effective
of interaction with families, and provide informa- communication using veteran parents and their ex-
tion about their role, the infant’s lung develop- periences. The design and implementation of inno-
ment, breathing support, and so forth. Once a vative practice standards and tools, such as the
family meeting has been scheduled, a “Family Family Meeting Template and parent information, is
Meeting note” must be placed at the baby’s hoped to initiate a stronger foundation upon which
bedside to alert other team members of the effective communication can be taught and rein-
meeting details (i.e., date and time). During forced among the healthcare team. This includes
weekly psychosocial rounds, time is also allocated emphasizing collaborative support for both staff and
to discuss the outcomes of the family meetings, patients during difficult discussions, for example,
which ensures that everyone is updated and encouraging all team members (including nurses) to
informed. be present during the provision of difficult news to a
family, and enabling fellows and residents to take
Discussion leading roles in such discussions to improve their
comfort levels with having these discussions.
The development and implementation of our
Effective Communication Initiative has increased Future opportunities
our awareness of the importance of providing
educational support around effective communica- The information we received from nurses specif-
tion to the medical and allied health teams. Our ically is that they often do not receive any training
primary objective in this endeavor was to prevent on delivering bad or difficult news to families,
any feelings of hesitancy or dissatisfaction felt by which we believe is a gap in the system since
parents. As difficult conversations are frequent in nurses spend considerable time at the bedside and
the NICU (Meyer et al., 2011), we feel that sup- frequently interact with families. Since nurses
porting our staff around the improvement and work alongside the medical team, interprofes-
development of effective communication skills not sional collaboration and the enhancement of care

Please cite this article in press as: Macdonell, K., et al., An Effective Communication Initiative: Using parents’ experiences to
improve the delivery of difficult news in the NICU, Journal of Neonatal Nursing (2015), http://dx.doi.org/10.1016/
j.jnn.2015.01.002
Communication with families in the NICU 7

for patients can likely be improved if nurses are Financial disclosure statement
better equipped with the knowledge to support
families during difficult and emotional times. With The authors have no financial relationships to
that said, nurses can also support physicians and disclose.
other members of the healthcare team. Since poor
communication is a major source of stress for staff
(Davidson et al., 2007), raising awareness about
Acknowledgments
effective communication and enabling all mem-
bers to improve their communication skills may The authors would like to thank the Effective
reduce unwarranted stress in an already Communication committee; our veteran parents,
demanding environment and strengthen the in particular Paul and Lori O’Leary, Lauren Michie,
team’s ability to work together towards patient- Zak and Michelle Goldman, Leslie Donaldson-Reid,
and family-centered care. Kristen Christie, and Nigel and Monica Wheatley;
In the future, we hope to have ongoing sessions to and the staff of the Neonatal Intensive Care Unit,
continue supporting staff (both existing and new) to in particular Dr. Karel O’Brien, Sandy Sculac,
enhance learning and communication skills in this Melissa Cooper, and Helen Cross. We would also
challenging domain. Through ongoing efforts, we like to thank Dr. Ruth Warre of the Maternal-Infant
hope to increase confidence in this area and create Care Research Centre for providing editorial
a fostering environment where staff members can support.
feel confident in themselves, be able to
support each other, and thus support patients and References
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Please cite this article in press as: Macdonell, K., et al., An Effective Communication Initiative: Using parents’ experiences to
improve the delivery of difficult news in the NICU, Journal of Neonatal Nursing (2015), http://dx.doi.org/10.1016/
j.jnn.2015.01.002
8 K. Macdonell et al.

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Please cite this article in press as: Macdonell, K., et al., An Effective Communication Initiative: Using parents’ experiences to
improve the delivery of difficult news in the NICU, Journal of Neonatal Nursing (2015), http://dx.doi.org/10.1016/
j.jnn.2015.01.002

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