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CHAPTER 16  Patient- and Family-Centered Care in the Pediatric Intensive Care Unit

Medicine, endorse offering families the option to remain in close
proximity to their loved ones during cardiopulmonary resuscitation and invasive procedures.24,25 Allowing family presence has
direct benefits for parents and caregivers, including improved
satisfaction, better understanding, reduced anxiety, better coping,
more emotional stability, and improved adjustment to a child’s
death.25–27 Despite these potential benefits, the practice remains
controversial. Clinicians raise concerns that parental presence may
increase the risk for litigation and may impact technical performance, clinical decision-making, and the ability to teach.25,26 In a
large single-center study, using formal practice guidelines and interprofessional education to prepare clinicians for parental presence, “few clinicians reported that parent presence affected their
technical performance (4%), therapeutic decision-making (5%),
or ability to teach (9%).”26 Moreover, recent data suggest that
family presence during intubations does not affect the rate of first
attempt success, adverse events, or self-reported team stress level,
suggesting that family presence during invasive procedures can be
safely implemented.28 By developing protocols, institutional policies, education, and dedicated staff resources to allow parental
choice and provide support for parental presence during invasive
procedures and cardiopulmonary resuscitation, these concerns
can be minimized.25

Transition Points and Follow-up Care, including
Bereavement
Once adjusted to the ICU, many families ultimately appreciate
the high level of physician supervision and nursing presence,
making transitions to the acute care floor potentially difficult.
Supporting families through these transitions during the course of
an illness is necessary.29 For families who spend an especially long
period of time in the ICU, providing families with realistic expectations and allowing families to visit the acute care floor prior to
transfer can be beneficial. In addition to providing additional support for transitions between different geographic locations in the
hospital, developing a framework to help families transition

through different approaches to care, from curative to life-prolonging to comfort care, is important.19 Furthermore, using a
systematic approach to follow-up with families following the
death of child, with condolence letters and formal follow-up
meetings, is also necessary to reduce the perception of abandonment and support the bereavement process.17,30–32

Sharing Information Using Collaborative
Communication
High-quality communication with families is essential in the
ICU, where medical information is complex and detailed, highstakes decisions are required, and multiple teams of healthcare
providers are involved.33 While there is a spectrum of preferred
decision-making roles of families, ranging from an independent
and autonomous approach to delegating decisions to clinicians,
most families need to be well informed.5 Optimizing communication with families reinforces the development of a partnership
with families, acknowledging the important role of parents and
caregivers and their unique knowledge of their child. The AAP
recommends “sharing complete, honest, and unbiased information with patients and their families on an ongoing basis so that
they may effectively participate in care and decision making.”1
Over the past 2 decades, there has been extensive research
in optimizing communication between healthcare providers,
particularly in the ICU and surrounding end-of-life care

139

decision-making.32,34,35 In the ICU, information is shared using
three different verbal models, including individual updates at the
bedside, family-centered rounds, and formal care conferences.
Written information may also be provided. Often a combination
of all of these approaches is necessary to optimize communication
with patients and families. Depending on the educational, social,
and cultural backgrounds of patients and families, in addition to

different provider styles, a variety of approaches to communication may be used.

Elements of High-Quality Communication
Sharing medical information is complex and requires a high level
of skill among healthcare providers. Parents and providers identify
a number of barriers to communication in the PICU, including
communication breakdown related to care coordination and provider hand-offs, families feeling undervalued or unheard as the
experts on their children, and the inadequacy of family-centered
morning rounds.36 While using a variety of means to communicate with patients and families is necessary (as detailed earlier),
parents cite specific elements of communication as very important.35,37 High-quality elements of communication include “comprehensive and complete information; clarity of information with
the use of clear language; ease of access to caregivers and their
explanations through the course of care; pacing of information,
soliciting of parents’ emotional responses and addressing their
questions; consistency of information; honesty, lack of false hope,
empathy as demonstrated by verbal and nonverbal, and affective
communication; summary statements and next steps.”23 Other
important components of high-quality communication include
using open-ended questions, soliciting goals, and increasing time
families spend speaking.38 Recent research has found that these
elements of high-quality patient- and family-centered communication are associated with higher parent satisfaction when incorporated into family conferences in the PICU.39
A useful tool to help clinicians practice high-quality communication is the VALUE mnemonic, in which family statements are
valued, family emotions are acknowledged, the family is listened to,
the patient is understood as a person, and family questions are
elicited.40 This mnemonic emphasizes the importance of using
collaborative communication, or a form of communication in
which interpersonal communication and the relationship between
the parties are “inexorably entwined.”20 Collaborative communication can accomplish at least five important tasks in PFCC, including (1) establishing a set of goals that guides collaborative
efforts; (2) exhibiting mutual respect and compassion for each
other; (3) developing sufficient understanding of differing perspectives; (4) ensuring maximum clarity and correctness of what
is communicated; and (5) managing intrapersonal and interpersonal processes that affect how information is sent, received, and

processed.20 When used consistently in family conferences, evidence suggests that the VALUE mnemonic is associated with
lower family symptoms of anxiety, PTSD, and depression.41 Particularly in the setting of the ICU, optimizing these elements of
high-quality communication may be difficult owing to the number of healthcare team providers involved and the short time
frame in which news must be delivered. Therefore, adequate training for all healthcare providers who interact with families is essential. In addition, when patients spend prolonged periods of
time within the ICU or have multiple subspecialty services involved, the identification of a continuity provider whose role is to
maintain consistency in the healthcare plan while ensuring
adequate communication with the family may be beneficial.


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However, current evidence is inadequate to demonstrate clear
benefit of or harm from increasing staffing consistency.42 Furthermore, using a team approach with respectful and excellent communication among team members, including physicians and
nurses, ensures that clear, consistent, and comprehensive information is shared in an empathetic manner. Collaboration within the
healthcare team results in improved overall outcomes in critical
care, including increased patient survival, decreased length of stay,
and decreased readmission rates, in addition to improved patient
and family satisfaction, decreased symptoms of anxiety and depression among family members, and reduced ICU nurse and
physician burnout.40

Family-Centered Rounds
Rounds in the ICU serve several purposes, including (1) to provide a setting for decision-making related to the management of
the child’s care; (2) to ensure adequate communication among
healthcare team members; and (3) to allow for teaching of
medical students, residents, and other trainees.43 Incorporating
the patient and family into these rounds fosters a partnership
with the family and aligns with a patient- and family-centered
approach. While larger and more extensive studies are necessary

to fully determine the benefits and potential barriers to this approach, many professional organizations endorse it. According
to several pediatric studies, this approach improves family satisfaction, improves communication between all stakeholders, increases family trust in the medical team, and potentially improves the quality of medical care provided, leading to shorter
lengths of stay.44–46 Several potential barriers and healthcare
provider concerns regarding this approach include (1) prolongation of rounds, (2) breach of confidentiality of protected health
information, (3) reduced opportunities for teaching, and
(4) concern for undermining trust of the healthcare team when
different opinions are shared or teaching is done.43,45,47 Current
evidence suggests that family presence on rounds does increase
per patient rounding times.48 However, family-centered rounds
exhibit other benefits. Family-centered rounds have demonstrated improved efficiency and communication because family
concerns are addressed with clarity, preventing communication
gaps and confusion. In addition, family presence usually lends
itself to additional teaching opportunities.45,47 Finally, when
surveyed, the majority of parents are not concerned about privacy issues. Therefore this concern can easily be discussed with
parents on an individual basis.40,42,44 To remain effective and
efficient, using a family-centered approach to rounding requires
thoughtful planning and following specific guidelines to streamline the process. Highlighting the purpose of rounds to all stakeholders and identifying explicit roles prior to rounds can help
prevent misunderstandings.43
Structured Transdisciplinary Care Conferences
In critical care, in which illnesses are life threatening and changes
occur rapidly, sharing information with frequent updates at the
bedside is crucial. Furthermore, in circumstances in which medical
decision-making is highly complex, multiple subspecialties and
disciplines are involved, or the severity of illness may lead to the
demise of the patient, proactive and timely structured transdisciplinary care conferences may also be beneficial.40 Although there is
variability in the approach and style of these conferences, the palliative care and adult critical care literature provides a general
framework for the facilitation of these conferences and highlights
several tools.20,40,41,49,50 In adult critical care, specific aspects of

these conferences are associated with increased quality of care, decreased family psychological symptoms, improved family ratings of

communication, and improved outcomes. These aspects include
timeliness (occur within 72 hours of ICU admission), private location for the conference, consistent communication by all members
of the healthcare team, increased proportion of time spent listening to families speak, the use of empathetic statements, assurance
that the loved one will not suffer, and providing explicit support
for decisions made by the family.40,41 Current pediatric research
suggests that pediatric intensivists fail to incorporate certain aspects that make transdisciplinary conferences effective for furthering PFCC. Often pediatric intensivists dominate conversations in
family conferences, focus mostly on the medical aspects of care,
and use complex speech, possibly preventing valuable family engagement in these conferences.39 While additional research is
needed to detail the benefits and potential negative aspects of this
format for communication in the pediatric patient population,
using elements of high-quality communication should be considered as potentially useful to optimize communication with
families.

Providing Transdisciplinary Support
for the Family Unit
Fundamental to PFCC is “providing and ensuring formal and
informal support for the child and family for each phase of the
child’s life.”1 Owing to the complex nature of pediatric critical
illness and the high level of emotional distress triggered by hospitalization, a transdisciplinary team approach is necessary to provide full support for the patient and family, including siblings,
who are at high risk for feeling abandoned and neglected.
Acknowledging that patients and families enter the ICU with
varying degrees of internal coping mechanisms in addition to external support systems is critical to optimizing support.
Teams from a multitude of disciplines, all with different expertise, should be incorporated into the healthcare team, when appropriate, to help demonstrate the value in providing a holistic
approach to care. Nurses at the bedside play a crucial role in recognizing family coping strategies, identifying unmet family needs,
and bridging gaps in communication.7 Consultation with subspecialists in palliative care and ethics should be considered early in
the course of hospitalization to improve communication, prevent
conflict, identify important goals through eliciting patient values
and preferences, and ultimately optimize shared medical decisionmaking.5 Physical therapy, occupational therapy, and rehabilitation medicine should be incorporated into the patient’s care using
a systematic approach to assist with functional recovery and potentially improve long-term quality of life. Specialists in music
therapy, art therapy, pet therapy, psychology, child life, and educational services can improve the quality of life in the ICU and

reduce ICU-related morbidities, such as anxiety, depression, delirium, psychosis, and PTSD.4,7 Social workers can provide assistance to reduce both emotional distress and stressors that arise
from practical aspects of having a child hospitalized, such as food,
transportation, and employment, while chaplains can address the
spiritual needs of the patient and family.5,13,51 With the multitudes of providers involved, excellent communication is necessary
to avoid additional stressors to families that inconsistent messaging can cause.
In addition to incorporating healthcare providers from multiple disciplines, peer-to-peer support can also be highly beneficial.1
Families may choose to serve on patient advocacy committees,


CHAPTER 16  Patient- and Family-Centered Care in the Pediatric Intensive Care Unit

share their experiences with other families through family support
groups, and volunteer to serve as consultants to other families
who are affected by similar disease processes or experiences. Allowing families who are in a crisis mode to contact and access
other families who have shared similar experiences may broaden
coping mechanisms and may help guide families through their
journey, particularly when they are faced with making very difficult decisions.

Collaborating and Building Partnerships
with Patients and Families
Developing a partnership with families is essential to fulfilling the
fundamental principles of PFCC. A partnership requires an “interpersonal relationship between two or more people who work
together to achieve a mutually defined purpose” which, in the
PICU, is “providing the best possible care for the child from a
holistic perspective.”52 The holistic approach requires inclusion of
the family, as the center of strength for the child. When partnering with parents and caregivers, who know the child best and
provide invaluable information regarding who the child is as a
person, healthcare providers treat the child more effectively and
address the child’s needs more appropriately.45 This partnership
allows parents and healthcare providers to contribute their own

expertise to achieve a common goal, leading to a relationship in
which the power differential between healthcare providers and
families equalizes.10
While building a partnership with patients and families at the
bedside is essential, optimizing PFCC also requires collaboration “at
all levels of healthcare: in the delivery of care to the individual child;
in professional education, policy making, program development,
implementation, and evaluation; and in healthcare facility design.”1
Encouraging families to participate in all dimensions of healthcare
through serving on family advisory councils, quality improvement
projects, and developing research protocols is critical.1 Furthermore,
building this partnership requires a transdisciplinary approach and is
“grounded in collaboration among patients, families, physicians,
nurses, and other professionals in clinical care.”1 In order to optimize
these relationships, clarity and transparency regarding the roles,
boundaries, and expertise of each stakeholder is critical.53

Empowering Patients and Families to Facilitate
Shared Medical Decision-Making
PFCC is optimized through “recognizing and building on the
strengths of individual children and families and empowering
them to discover their own strengths, build confidence, and participate in making choices and decisions about their healthcare.”1
Empowering the patient and family to participate in shared
decision-making is fundamental, for “the perspectives and information provided by families, children, and young adults are essential components of high-quality clinical decision-making.”1 In
the setting of the ICU, complex and high-stakes decisions are
made in a short time frame. In many circumstances, there is a
high degree of uncertainty in outcomes, making these decisions
even more difficult. The majority of these clinical decisions are
based on the medical expertise, empirical evidence, experience of
the healthcare providers and consultants, and—most importantly—values and perspectives of the patient and family.

By definition, shared decision-making occurs when both the
physician and patient (if possible) and family “share their opinions

141

and jointly reach a decision.”40 Dimensions of shared decisionmaking include (1) providing medical information and eliciting
patient values, preferences, and goals; (2) exploring family’s preferred role in decision-making; and (3) deliberation and decisionmaking.40,54 Collaborative communication, as discussed earlier in
this chapter, is required to adequately fulfill the first dimension.
In regard to dimension two, multiple studies demonstrate that
families have varying decision-making preferences, particularly
regarding limitation of life support or other aggressive interventions.5,40 Therefore prior to making assumptions, exploring the
family’s preferential role in decision-making is important. Furthermore, shared decision-making should not be interpreted as
allowing the family to decide without support from the providers
or giving families increased responsibility or autonomy,12 as
“there is a fine balance between supporting and guiding a family
while allowing the family appropriate space to make their own
decisions.”23 Most families do not want to feel alone when making difficult decisions. Recommendations and guidance from
providers may help alleviate potential burdens associated with
making difficult decisions. Finally, shared decision-making does
not mean that families should exclusively drive medical care or
be empowered to make decisions that are not medically sound.
The key aspect of shared decision-making is that the process is
collaborative and incorporates the opinions and expertise of all
stakeholders. Finding the right balance among stakeholders to
achieve goal-oriented patient care through established frameworks for shared decision-making is necessary to provide optimal
PFCC.54
There are multiple benefits associated with shared decisionmaking. When patients and families become active participants in
their healthcare, there is improved understanding and more motivation to follow through with care. In addition, for parents and
caregivers who lose their sense of control with the hospitalization
of a critically ill child, participating in decisions can provide a

great source of strength. As one mother explains, “I was able to
still be her mom.”55 By “encouraging them to continue actively in
their parental role by promoting shared decision making and
helping the family to retain their responsibilities throughout hospitalization” parents and caregivers retain their identities, which
fosters the integrity of the parent-child relationship, maintains
cultural and family traditions, and demonstrates respect for and
value of the child as a person.52,55 Although further studies are
necessary to elucidate the important driving factors for parental
decision-making, parents overall want to be “good parents.”56
Understanding what parents value as important factors in “being
a good parent” potentially may improve the quality of PFCC.56

Patient- and Family-Centered Care Improves
Outcomes for all Stakeholders
Over the past 2 decades, PFCC has improved outcomes in the
provision of high-quality patient care. According to the AAP,
“patient and family-centered care can improve patient and family
outcomes, improve the patient’s and family’s experience, increase
patient and family satisfaction, build on child and family strengths,
increase professional satisfaction, decrease healthcare costs, and
lead to more effective use of healthcare resources.”1
According to numerous studies, patients and families directly
benefit from the incorporation of the fundamental principles into
practice. Patients and families have reduced anxiety, better cooperation, improved satisfaction, reduced emotional distress, better


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adjustment to hospitalization, and faster recovery from illness and
surgery.1,8 Because the needs of families are addressed more explicitly, families also have improved functioning, increased confidence in providing ongoing care to their child, are more willing
to seek help from healthcare providers, develop a greater degree of
trust, and demonstrate improved competence in problem-solving
and making complicated healthcare decisions.1,8 When families
receive clear and consistent communication and actively participate in the care of their child, they experience a greater sense of
control, resulting in preservation of the parent-child relationship,
with reduced anxiety, posttraumatic stress, and complicated grief.8
Implementing PFCC in PICUs has special implications in the
setting of pediatric death. The majority of inpatient pediatric
deaths occur in the PICU. Current end-of-life practices in the
ICU are suboptimal. Families describe disempowerment, loss of
control, and alienation from their dying child in the ICU as a
result of both their child’s illness and the cultural and physical
environment in the PICU.57 Moreover, bereaved parents are at
risk for adverse mental and physical health after their child’s
death.58 Compassionate and empathetic PFCC in PICUs may
help improve end-of-life care and mitigate bereavement outcomes
by helping parents preserve their parental role, engaging families
more, maintaining the pediatric patient’s personhood, and fostering meaning making.57
Healthcare providers, institutions, and the healthcare systems
also directly benefit from PFCC. When healthcare providers gain
important insights into the needs and values of patients and their
families, they establish trusting relationships and improve the
quality, efficiency, and safety of the care they provide. As a result,
providers have improved work satisfaction, which leads to improved job performance, reduced burnout, and decreased staff
turnover.1 With the provision of higher-quality care, healthcare
institutions and systems benefit with reduced healthcare costs,
improved patient and family satisfaction, reduced risk for litigation, and potentially gain a more competitive position in the
marketplace.1

Overcoming Barriers and Challenges to
Patient- and Family-Centered Care in the
Intensive Care Unit
While significant progress has been made in incorporating PFCC
into the ICU, there remains a gap between current and proposed
practice. Ongoing research reveals that families continue to express that their needs are not always met.2,8,15,17,22 While the reason for this gap in practice is likely multifactorial, there are several
barriers that are extremely challenging to overcome (Box 16.1).
First, there is a fundamental difference in perceiving the ICU as a
“bedroom” versus an “office.”21 For families, the ICU needs to
serve as a bedroom, where a sick child can experience warmth,
comfort, and a healing environment. On the other hand, critical
care providers need an office equipped with computers, monitors,
alarms, and advanced technology. This dichotomy fundamentally
inhibits the creation of a bedroom and reinforces the role of “the
visitor” and “the patient,” rather than fostering a collaborative
partnership.21 Second, the emotional intensity of life-altering and
life-threatening circumstances is unavoidable. The impact of this
emotional intensity on patients and families and the complexity
of the medical care provided creates an implicit power differential
between healthcare providers, patients, and families, further reducing the ability to develop a partnership. Finally, the necessity

• BOX 16.1 Potential Barriers to Patient- and Family-

Centered Care in the Intensive Care Unit
• Dichotomy in patient, family, and provider needs of the ICU as a “bedroom”
versus an “office”
• Emotional intensity of life-altering and life-threatening circumstances
• High-stakes nature and complexity of medical decision-making, requiring
explicit value-based decisions

• Implicit and explicit power differential between healthcare providers, patients, and families
• Lack of or minimal formal training in high-quality communication skills for
healthcare providers
• Enhancement of cultural and language barriers in the fast-paced, emotionally intense, and complex setting
• Healthcare provider misperception of increased risk for litigation, distraction, and the inability to teach trainees with greater family involvement
• Increased complexity of patient population, leading to medical- and
technology-savvy families who have different needs and potentially
require different models of care

of making high-stakes decisions wrought with uncertainty exposes
fundamental differences in belief and value systems that are potentially challenging to overcome. Even under ideal circumstances
with the most advanced communication systems and extensive
training in cultural humility, these differences can create intense
barriers and conflict rooted in different perceptions of what is in
the best interest of the patient. These conflicts further prohibit the
development of partnership. Overcoming these fundamental barriers requires acknowledgment, transparency, and further research
to identify both the explicit and implicit practices and values
within the ICU (Box 16.2).21 Using a model of PFCC, this research requires employing a collaborative approach in which all
stakeholders have an equal voice in order to develop creative
solutions.
In addition to these fundamental barriers, there is an increasing complexity to the patient population that requires the PICU.
Accommodating the needs of medically complex children’s parents who are medically and technology savvy may require different models of care.59 PICUs need to be able to fully accommodate
for the “skills and expertise” of families of chronically ill and
medically complex patients: “there is a clear need for research that
identifies what constitutes success to these families, along with the
challenges faced by staff who care for them…[in order to] change
practice and foster a culture of supportive care inside the PICU.”59
• BOX 16.2 Overcoming Barriers to Patient- and

Family-Centered Care in the Intensive

Care Unit
• Provide formal training in cultural humility; develop a robust interpreter
service and hire cultural navigators.
• Provide formal training in collaborative communication and goal-oriented,
shared medical decision-making.
• Include patient and family input for intensive care unit (ICU) policies, procedures, planning, and delivery of healthcare.
• Acknowledge and maintain transparency regarding implicit and explicit
values and practices in the ICU.
• Support and engage in patient- and family-centered care research to
identify and overcome additional barriers.
• Develop adequate support systems for healthcare providers who suffer
from compassion fatigue and vicarious trauma.


CHAPTER 16  Patient- and Family-Centered Care in the Pediatric Intensive Care Unit

PFCC is not equivalent to family-driven care, in which families
exclusively direct the medical care, dominating the relationship.
The establishment of professional boundaries and specific roles is
critical in the development of mutually respectful and collaborative partnerships.
Despite the knowledge that high-quality communication is an
essential component of providing comprehensive PFCC, physicians’ communication skills remain suboptimal. Adult and pediatric communication literature has consistently demonstrated that
family satisfaction with PFCC is associated with a higher proportion of family speech, empathetic statements, and specific statements of support, as outlined in previous sections of this chapter.39 Yet when participating in care conferences, physicians use
complex language, speak for the majority of the time, and miss
one-third of families’ emotional cues.38,60 Further research is
needed to understand how physicians’ communication skills can
be improved and whether training programs can be implemented
to improve PFCC.42
Finally, the development of compassion fatigue and secondary
traumatization experienced by healthcare providers who are witnesses to extreme suffering of children and families in this complex environment can lead to disengagement from patients and

families.61 High clinical workloads and demanding extraneous
professional obligations can lead to provider burnout and loss of
the ability to maintain an empathetic approach to patients and
families. Therefore the needs of healthcare providers should also
be explicitly recognized and addressed by institutions and healthcare systems in order to improve the quality of PFCC delivered.

Summary
The pediatric critical care unit is a complex environment that creates a high level of stress for patients and families. Incorporating
PFCC into practice improves patient and family satisfaction,
reduces stress and anxiety, fosters the parent-child relationship,
and ultimately increases the quality, efficacy, efficiency, and safety
of care delivered. Developing a partnership with patients and
families built on mutual respect, using collaborative communication, providing extensive support for the family unit, and encouraging patient and family participation in all aspects of care,
including shared medical decision-making, are fundamental
principles essential to the practice of PFCC. Overcoming real and

143

perceived barriers to incorporating PFCC into practice requires a
collaborative and transparent approach involving all stakeholders
to identify creative solutions while providing adequate support to
healthcare providers, who are at risk for compassion fatigue, secondary traumatization, and burnout.

Key References
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Doorenbos A, Lindhorst T, Starks H, Aisenberg E, Curtis JR, Hays R.

Palliative care in the pediatric ICU: challenges and opportunities for
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Feudtner C. Collaborative communication in pediatric palliative care: a
foundation for problem-solving and decision-making. Pediatr Clin
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Greenway TL, Rosenthal MS, Murtha TD, Kandil SB, Talento DL,
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Macdonald ME, Liben S, Carnevale FA, Cohen SR. An office or a bedroom? Challenges for family-centered care in the pediatric intensive
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McGraw SA, Truog RD, Solomon MZ, Cohen-Bearak A, Sellers DE,
Meyer EC. “I was able to still be her mom”—parenting at end of life
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Meert KL, Clark J, Eggly S. Family-centered care in the pediatric intensive care unit. Pediatr Clin North Am. 2013;60(3):761-772.
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The full reference list for this chapter is available at ExpertConsult.com.