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A Discussion of Family-Centered Care Within the Pediatric

Intensive Care Unit

Source:
Critical Care Nursing Quarterly

March 2010, Volume :33 Number 1, page 82- 86


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Keywords
family-centered care, parental involvement, pediatric intensive care

Authors

Frazier, Angela RN
Frazier, Heath RN
Warren, Nancy A. PhD, RN

Abstract
Every year, thousands of children are admitted to pediatric intensive care for treatment. Many of
these admissions are for acute injuries, but children with chronic illnesses requiring repeated
hospitalization are also on the rise. Hospitalization of a child is extremely stressful for both the
patient and family. Historically, intensive care units had restrictive visitation hours and did not allow
for sibling visitation or multiple family members. Parents and family members were not encouraged
to participate in care when at the bedside. As the shift toward family-centered care continues, many
hospitals are now changing visitation polices to allow for active family involvement in patient care.
Parents are now encouraged to participate in care. Intensive care units are modifying layouts of the
unit to facilitate visitors and provide sleeping spaces for parents when available. Families are
considered part of the team instead of visitors, and are included in the decision making process. The
purpose of this article is to promote discussion of family-centered care in the pediatric intensive care
unit.

Article Content
FAMILY-CENTERED CARE
Family-centered care (FCC) has only recently emerged in the healthcare field since the 1950s, but it
is one of the most important movements in pediatric care for the 21st century. The word family refers
to 2 or more persons who are related in anyway-biologically, legally, or emotionally.1 In the pediatric
population, parents or guardians determine who make up the patients' family. Family structures vary
dramatically and can include blended families, single parent households, adoptive homes, same-sex
couples, and transgendered models that include extended family members.2
Family-centered care is a care delivery model that incorporates a partnership between families and
providers when caring for the patient. Some common components of FCC include respect,
collaboration, participation, and information sharing among family members. Respect and dignity are
provided for patients and families by honoring personal and cultural beliefs and incorporating these
beliefs into healthcare choices. Healthcare providers collaborate with families and patients for the
delivery of care as well as facility wide changes and improvements. Patients and families are
encouraged to play an active role in decision making and delivery of care. Healthcare providers open
communication to families about treatments and plans of care so that active involvement is

facilitated.2,3 Parent involvement in care, respect for culture, and recognition of family importance
are all factors that are important in the delivery of FCC. Family-centered care can be applied to all
patient settings and includes patient involvement along with family involvement. The very young, very
old, and all ages can be included in the collaboration of care.
Family-centered care within the pediatric intensive care unit (PICU) is largely focused on parental
involvement and parental presence at the bedside. Parents assume the role of advocates for their
children, educators to clinicians, and support to other families. Sibling visitation is slowly evolving to
include more interaction and education that includes the entire family in the care process.

VISITATION POLICIES
Since the 1800s, visitation polices within the hospital settings have been restrictive. The first
children's hospitals were opened in the 1850s to treat children in cleaner conditions than those found
at home. Visitation was heavily restricted and key goals of the hospital were related to social reform
instead of patient care. During the early 1990s, hospitals became more sanitary environments that
were no longer considered places of death. With the emergence of neonatal and pediatric intensive
care units, further restrictions on visitation policies were enforced as concerns for communicable
disease emerged.
Risk of infection, confidentiality, and crowd control were all factors that have contributed to the slow
incorporation of FCC in the pediatric setting. As recently as 10 years ago, more than half of pediatric
hospitals surveyed still restricted visitation to short time frames several times a day.4 Although FCC
was initially more focused on the ability of family presence at bedside, the shift has now changed to
include family involvement, which can include additional roles such as patient advocate, peer
support, hospital committees, and educational opportunities.5
Many factors have contributed to the slow emergence of FCC in PICUs. Although involving a child's
family within care may seem like common practice to recent nurse graduates, more experienced
nurses often have difficulty accepting the changes associated with FCC. The traditional PICU
environment is not a warm and fuzzy place that encourages visitation or parental involvement.
Pediatric intensive care units are often busy, crowded, over stimulating, short staffed, procedure
oriented, and hectic. Until recently, parents were often asked to leave the room or unit during
procedures, report, and rounds. Visits for older siblings were limited to short periods of time, if
allowed at all. Concerns over infections caused by sibling visitation have been evaluated but require
further research. Communicable diseases often found in children could possibly be transmitted to the
sibling in the hospital. The stress of viewing a sibling who is ill maybe considered traumatic and
further cause of emotional harm. Furthermore, a child that is in demise or dying may add more
trauma to an emotionally charged situation that is already difficult for parents without adding more
stress on the young siblings. Most institutions do not provide sleeping areas in the room or on

hospital property for parents to sleep at night, although this is an emerging trend across the United
States.6

LITERATURE SUPPORT OF VISITATIONS


The issue of FCC within the PICU leads to several concerns that are considered to be inaccurate.
Sibling visitation, parental and patient stress, confidentiality, and time constraints are all concerns
that nurses and healthcare professionals state as potential barriers to family centered care. Family
members benefit when allowed to take part in care. Nurses often experience stress when working in
PICUs. One frequently stated concern was that open visitations take additional time and make
provision of patient care more difficult.7,8 Poor communication between physicians and families may
add additional stress for nurses who do not have enough information to answer multiple questions.
The American College of Critical Care Medicine Taskforce has several recommendations regarding
visitation in pediatric and neonatal intensive care units.9 Those recommendations included, but were
not limited to, (a) parents shall be allowed open visitation 24 hours a day; (b) siblings were allowed to
visit with parental approval after previsit education to determine age appropriate information and
behaviors; and (c) siblings of immunocompromised patients may be allowed to visit with physician
approval. These recommendations are based on what is in the best interest of the patient and
incorporate family and cultural values into care.
A visitation program for the neonatal intensive care unit developed at the University of Iowa Hospital
and Clinics outlines specific interventions that have supported incorporating sibling visitation in a
positive manner that allows bonding and interaction. Parents were given the option to decide if
sibling visitation was appropriate. The nurses were involved in the emotional preparation of the child
so that the experience was positive rather than traumatizing. Age-appropriate explanations were
given and the children were asked to wear gowns and masks during visitation. Positive feedback
received from families was related to the support of family and support of nursing staff.
Parents and PICU nurses often have different opinions about what is stressful to families. Parents
reported the highest level of stress from role alteration.10,11 Other causes of stress included alarms,
communication, procedures, and the child's appearance. Many of these stressors decrease over
time as parents adjust to the unit and environment. Stressors for healthy children in the family
included changes in caregivers and parental behavior. Family members report lower levels of anxiety
when open visitations were in place and were more satisfied with care when open communication
occurred. Many needs identified by parents were psychological in nature and included frequent
visitation, good staff communication, and feeling involved with care. The transition of family at
bedside will continue to develop slowly in the PICU as it becomes the standard of care. Pediatric
intensive care units can be restructured to private rooms that enhance privacy and family presence.
Education and communication play a large part in incorporation of FCC in to PICUs. Interventions
such as providing parent meal vouchers, transportation, sleeping arrangements, and daily amenities
are helpful in improving hospitality to visiting families. Encouraging parental involvement in care while

evaluating coping needs are important roles of the PICU nurse. Sibling preparations prior to visits
with hospitalized children are needed. Prescreening for signs of communicable illnesses is common
practice in many PICUs. Evaluation of psychological and emotional preparation for the visit should
be considered with young children. Encouraging hand washing and universal precautions in all
visitors is useful to prevent the spread of infection.
Staff education in preparation for open visitation of a unit is helpful to improve interpersonal skills that
are needed for extensive family interactions. Reinforcing positive aspects of family involvement can
help make staff more open to changes. Review of developmental and coping mechanism of healthy
children can make visitation less difficult for nurses who are uncomfortable with possible reactions of
siblings.
Both patients and family members benefit from a FCC model while in the PICU. Multiple research
projects reinforce that parent and patient stress are decreased when parents are allowed to be
involved with care. Coping and comfort in parenting roles are enhanced when parents have an active
part in decision making and activities of care. Healthy sibling interaction was generally promoted
when adequately prepared and age appropriate.

IMPLICATIONS-ADDRESSING NEEDS OF THE PEDIATRIC FAMILY


MEMBERS
Computer and technology systems have provided a means for the public to receive information
immediately, thus producing a more informed society and family members who are more
knowledgeable to ask better questions and elicit more information. Because the pediatric units are
highly technical environments, nurses and families may be more readily aware of the need to provide
information before entering the PICU. Pediatric nurses must maintain competencies, continuing
education credits for licensure, Pediatric Advanced Life Support and Neonatal Life Support
certifications, as well as certification to operate and interpret data from specific equipment in the
PICU.
Most units are relaxing visiting times and allowing parents or significant others to remain in the room
as much as possible. Frequent visitations have become more the norm in many of the PICUS so that
the ill child can remain attached to the family. During the busy day of the PICU, nurses may not be
attuned to the fact that family members need to feel that it is all right to leave the hospital for a while.
Reassuring the family members that they can be called if needed may be one way of assisting with
this issue. Listening to the family with empathy may be one method of making the family comfortable
with the hospital staff. The idea of talking with the same nurse is problematic, as nurses tend to work
12-hour shifts, earn days off, or be assigned to other patients to accommodate the workflow and
integrity of the unit. A good response to these changes might be for the nurse to introduce the newly
assigned nurse to the family members. Providing snacks in the waiting room may assist with the
long-time notion that hospital food is not very appetizing and also provide food for those who do not

have extra money for snacks in this time of economical recession. Although hospital food may not
seem as desirable as dining at home or at a restaurant, many may need this break for a few minutes
of time to themselves.
Family members may also address feelings such as anger or guilt because they think they should
have performed actions that would have avoided the illness, accident, or cause of their child's
admission. Pediatric nurses can be attentive to such negative feelings and offer support by listening
to or seeking outside assistance from hospital chaplains, pastors, or counselors. Literature may be
provided regarding these services to the family members so they have this knowledge. Support can
be offered by discussing the environment of the unit and methods to communicate if the child is
unable to communicate because of the illness or mechanical ventilation. When children are critically
ill, family members may wish to discuss the possibility of demise or death. Because family members'
perception of bereavement experiences around the death could affect positive bereavement
outcomes, early detection of unmet needs by nursing staff is crucial. Families facing death of a
pediatric child are at potential risk for physical and psychological health problems. Although it is
unrealistic to address every aspect of family members' need when demise occurs, stressors
associated with bereavement experiences of a child may be reduced if appropriate and timely
interventions are provided. Family members require opportunities to be present at the time of death if
that should occur.
Given the complexity of variables surrounding FCC and the child's illness, nurses may be in a place
to identify needs of the both the family and the patient.12 In FCC, family members will become
involved in an egalitarian interaction that expands giving and receiving by both family members and
pediatric nurses.

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