Family-Centered Care in the Pediatric Intensive Care Unit

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Chapter 9 Family-Centered Care in the Pediatric Intensive Care Unit

Debra Ann Ridling, Mithya Lewis-Newby, Daphne Lindsey

Pearls

• Using family-centered care principles to establish the parents as partners with the health care team encourages trust and cooperation, reduces fear and anxiety in both the patient and family, and creates an environment of mutual respect.

• Access to their critically ill child is reported by parents to be a high priority. Benefits have been clearly demonstrated when pediatric intensive care unit policies support parent presence in the unit at all times, including periods that traditionally have been closed to them, such as change of shift, during admissions, and during emergencies.

• Access to information provides parents with tools to better collaborate with the health care team. Participation in rounds, access to their child’s medical chart, and daily communication with a care provider result in more accurate exchange of data and fewer errors in communication and improves the patient’s and family’s experience.

• Pediatric intensive care unit staff can facilitate parents’ participation in the daily care of their child, thereby supporting the parental role, preserving the parent-child bond, and reducing the impact of traumatic events, such as procedures and resuscitation, on both the patient and family.

Admission to the pediatric intensive care unit (PICU) constitutes a crisis for both the patient and family. This crisis is amplified by the stress felt by the parents in the ICU environment. (In this chapter, the term “parents” is used for the primary caregivers of the child, whether they are biologic, adoptive, legal, or other.) The main contributors to the stress are the child’s uncertain outcome as well as the disruption of the parents’ role and their separation from the child. In addition, the environment, appearance of the child, procedures performed on the child, and staff interactions all contribute to stress.¹^–⁹ A crisis is an emotionally destabilizing change that occurs when a person’s normal and usual methods of coping and problem solving are not effective.¹⁰ Reestablishing the parental role in partnership with health care providers as early as possible mitigates the fear and frustration experienced by most families. Establishing this partnership is the core of the family-centered care philosophy, and it requires respectful attention at every level.

Caring and Compassion

In 2009 the Institute of Medicine ¹¹ reported on its model for improvement, which included six quality aims: safety, effectiveness, equity, timeliness, efficiency, and patient-centeredness.

The Institute of Healthcare Improvement ¹² adapted these into their “Idealized Design of the ICU.” PICU leaders,¹³ in collaboration with Agency for Health Care Research and Quality, took this model and adapted it to the PICU setting. Patient-centeredness is weighted as having importance equal to the other core components of the model, including safety and effectiveness. Core components of patient-centeredness were defined as empathy, compassion, and respect. This patient-centeredness should be extended to the parents. In many cases, the admission of a child to an ICU may be the most stressful, frightening event a parent has ever experienced. Providing empathy and compassion to patients is central to the work of critical care providers, but this care must be extended to the parents and is just as important as providing exceptional clinical care. Actions that can demonstrate care for parents include skilled communication, education, emotional support, and promotion of family participation in care.¹³

Humanitarianism and Defining the Family

Care teams can spend a great deal of time determining who is “the family” or “the immediate family.” Traditionally, parameters pertaining to visiting and involvement in care have been defined and limited by the preferences of the health care team. Extended family and important friends often have been excluded. For many years the definition of family used by health care teams was based on the 1950s model of two biologic parents being the primary care givers and the main support being the grandparents.^9,^14,¹⁵ These assumptions are no longer valid. The team should ask the parents to define their family so that caregivers are clear on who can receive information, be present, and be integrated into the care team. It is important to understand both the legal and informal arrangements of the family so that information is communicated to the appropriate members and requirements pertaining to consent and other legal issues are maintained.

Although these logistical arrangements are necessary, humanitarianism should be demonstrated toward the entire family. One must recall that individual members of the family may have different fears, dreams, and expectations for their child. Providers are providing care not only for the child and parents, but for siblings, relatives, and an extended network of friends, teachers, and classmates. As noted by Kissoon,¹⁶ “Whatever the composition of the family, the humanistic leader recognize[s that] paternalistic physician-patient/family interactions are outdated and should be replaced by partnership.” Listening to parents and supporting them is respectful and fosters a collaborative relationship.

Family-Centered Care Core Concepts

Family-centered care is based on the assumption that the family is a child’s primary source of strength and support. Family-centered care is characterized by four principles:

• Dignity and respect. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care.

• Information sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision making.

• Participation. Patients and families are encouraged and supported in the decision to participate in care and decision making at the level they choose.

• Collaboration. Patients and families also are included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, evaluation, health care facility design, professional education, and delivery of care.¹⁷

Some general considerations described by the Institute for Family-Centered Care include a shift in attitudes and the development of new language. Some themes to be considered when developing guidelines around principles of family-centered care should include these concepts (Table 9-1).¹⁷^–²³

Table 9–1 Family-Centered Care Concepts

Traditional	Contemporary	Concepts
Deficit	Strength	Highly involved parents who require detailed information and continual presence with their child have often been considered a distraction to the delivery of care because of the time and energy required by the health care team to attend to these parents. Sometimes, the parents have been thought of as a nuisance. The paternalistic model of desiring parents to be passive observers of care is now called into question. A family-centered care approach considers involved parents to be a strength to the child and multidisciplinary team. Appropriately incorporated into the delivery of care to the child, the parents can be an important asset.
Control	Collaboration	Traditionally, the health care team has controlled the degree of involvement parents had in their child’s care. This control has included all aspects of care, including access to the child, information, and even the care being delivered. The contemporary approach of collaboration incorporates the parents in all aspects of care and supports the parents as an equal team member for the optimal delivery of care to their ill child.⁵⁹
Expert	Partnership	In the oldest and outdated model of critical care, the delivery of care was driven by the medical physician without input from other disciplines. As critical care has become more complex and progressed over the years, most intensivists value the contributions of a number of experts from a variety of disciplines, such as nursing, respiratory care, social work, and pharmacy. Partnerships have been established with a variety of experts to deliver comprehensive critical care. Partnering with parents places value on what the parents bring to the team, such as continuity, history, and how the child responds to illness and treatment.
Information gatekeeper	Information sharing	Health care team members and institutions have desired to control information. This control of information has been considered to be related to the parents’ lack of ability to understand medical concepts and/or health care providers’ fears of litigation. Information sharing actually decreases the risk of litigation and gives parents the necessary tools to make complex, informed decisions.
Rules	Guidelines	Historically, administrators and managers have set rules for how family members should behave while in the hospital. The connotation of the word “rule” is considered harsh and not congruent with the approaches of family-centered care. The use of guidelines for behavior is more respectful and demonstrates an attitude of flexibility and collegiality.
Visitors	Parents	In some of the older models of critical care, parents had strict restrictions on how much time they were permitted to stay with their child. For example, in some settings, only weekly visits were allowed. More recently, visitation has been liberalized, but some units still limit visitors to certain hours of the day or specific time increments. Parents should be exempt from most rules of visitation. Parents should be considered an extension of the child and should have full access. The most respectful language is not to call the parents visitors at all but to reserve that term for casual acquaintances of the child or family, such as a school friend or teacher.
Rigid	Flexible	Some units still approach unit standards by rigid rules, setting policy in the strictest sense. In this traditional model of strict adherence to policy, the individual needs of the patient and family are not respected. Some units set policy based on experience with the worst circumstances. Families ask that policies be created to meet most families’ needs with room for flexibility and regard for the needs of the child.

Challenges for the Team and Family

For families, critical care means fear, imbalance, turmoil, crisis, and a host of other sudden, deep emotions.²⁴ Both physical and psychological demands are placed on the family.²⁵

Although the majority of families are able to adjust during this crisis, some are overwhelmed to the point of dysfunction. Like any other traumatic situation, for a small percentage of families, the crisis is sufficient to collapse an already overloaded family system.⁹ Family functioning, adaptability, and resilience are affected by many factors, including the family’s baseline functioning before their child’s critical illness.²⁵ The family that lacks the financial, physical, emotional, or psychological resources to cope with the crisis of a hospitalized child deserves special consideration. All available resources should be directed to the family to assist them in their ability to support their ill child. A multidisciplinary team, including a social worker, child life specialist, pastoral care provider, and psychiatric care provider, when appropriate, may assist the family in resolving the concerns distracting them and enhance their coping skills, allowing them to focus on their child. It is helpful to designate one health care provider as the spokesperson with whom the family can speak daily for medical updates, which reduces the opportunity for confusion or contradiction among caregivers. If the family is still unable to provide a calm, nurturing atmosphere for their child after provision of these additional practical, psychological, and spiritual supports, it may become necessary to structure or limit the family’s participation.

Culturally Sensitive Care

Culture is a pattern of learned beliefs, shared values, and behavior that includes language, styles of communication, practices, customs, and views on roles and relationships. It goes beyond race, ethnic background, and country of origin.²⁶

Because individual clinicians cannot be knowledgeable about all cultures or even the major groups of organized religions, the unit should develop principles of cultural competency.²⁷^–²⁹ Many hospitals are creating Centers of Diversity and Health Equity to assist in developing and implementing policies that create and maintain a culturally competent environment. Providers can be trained in interpersonal interpretation—that is, to look beneath the surface when communicating with someone from another culture, to listen actively, and to seek out the real meaning underlying a family member’s statement.²⁶ Many hospitals are creating Patient Navigator Programs to build trust with families in their own language and ensure that families understand the care that is being provided. Patient navigators are trained, culturally sensitive health care workers who provide support and help families navigate through the various components of the health care system. Additionally, patient navigators help providers understand families’ particular needs.

Taking into account the diversity and uniqueness of each patient and family is important if one is to provide respectful care and services that are responsive to their language, race, gender, culture, spiritual values, family configuration, education, and other attributes. One of the most effective ways to understand the needs of an individual family is to ask. Often the spokesperson for the family can provide the team with the necessary information that will assist in the care of the critically ill child.

Professional Boundaries

Although family-centered care principles require a shift in professional practices and a change of culture within the hospital, professional roles still must be clearly defined and respectfully maintained. When entering the child’s room, clinicians should introduce themselves to the family and explain their role on the care team. Respect toward other members of the health care team should be demonstrated at all times. It is crucial to maintain good working relationships when caring for a critically ill child whose clinical condition may change quickly and whose outcome may depend on continuous collaboration between persons of many disciplines.¹⁶ Stable, trusting relationships between a patient, family members, and providers is critical in treating and managing a patient’s illness. However, developing and maintaining stable, trusting relationships in the PICU can be challenging. Developing a clear understanding of the concept of boundaries and therapeutic relationships and a skill set in these areas is crucial.³⁰ A therapeutic relationship is defined as “an interactive relationship with a patient and family that is caring, clear, boundaried, positive, and professional.”³⁰ Therapeutic relationships involve ensuring that patients’ and families’ needs are met while maintaining personal and professional boundaries. Providing services beyond the scope of your professional role undermines the health care team partnership, no matter how well intended your actions. It is the professional’s responsibility to maintain boundaries and help parents and families maintain theirs.

Personalizing Care

The environment of care has a growing impact on families.²⁶ Creating an opportunity for the individual characteristics of the child to be expressed when the child is unconscious promotes humanitarianism in the PICU setting. Individualizing the environment to include photos, favorite toys and blankets, music, and audio recordings of siblings and family members is an effective technique. The creation of a collage or poster about the child and family is an activity that often is well received by families and clinicians alike and can be therapeutic for the family. Mementos from home draw providers to the bedside and promote conversations that provide a glimpse of the child when he or she was well,³⁰ assist the care team in getting to know the family, and help the team see child and family as people, not just diagnoses.

Communication

The highly technical nature of the PICU environment and its multiple caregivers, paired with parental stress, creates a complex situation with a great potential for miscommunication. It is important to establish clear lines of communication both among the various members of the health care team and between the team and the family.²⁶ Because the stressed family is less able to take in, comprehend, and retain information,^21,³¹^–³³ explanations must be clear, concise, and repeated. Special attention must be focused on avoiding medical jargon and abbreviations. Routine care conferences should be held because they are an important avenue to provide information, share opinions, and reach consensus. These care conferences may be held to provide medical updates or make treatment decisions.²⁶ It may be helpful to advise parents to maintain a bedside journal or log in which they can note information given and list questions to be addressed later. Placing a board in the child’s room that lists the names of the care providers, the daily plan, and goals and that is updated daily is helpful to families. Collaborative care planning will help reduce stress for all persons involved in the care of the patient and may resolve or defuse conflicts between the family and the medical team or within the team itself.²⁶

Daily Communication

To reduce confusion or contradiction among the caregivers’ messages, it is helpful to designate one health care provider as a spokesperson with whom the family can speak daily. Ideally, this person should be the attending physician.^27,³⁴ The content of the communication should include the status of the child, the results of any tests, procedures, or consultations, and the plan of care. Different families prefer different communication styles; the best practice is to ask them how they like to give and receive information. One helpful mnemonic that has been shown to improve communication in the ICU is VALUE (value, acknowledge, listen, understand, and elicit).³⁵

Daily contact should allow sufficient time for questions and support and should occur in a quiet environment. The decision to talk at the bedside versus at a remote space depends upon the level of consciousness and developmental level of the child, the type of information to be communicated, and the desires of the family. Generally, in the case of a conscious adolescent or an older, mature school-aged child, it may be most appropriate and respectful to include the patient in the conversations rather than exclude him or her. Alternatively, initial conversations may be conducted away from the bedside and then duplicated at the bedside of the awake, more mature child. Ideally the health care provider should sit down with the family and allow the conversation to include a period of silence to ensure that the family has ample time to voice questions and concerns. Listening is one of the most highly rated traits of health care providers by family members and leads to greater family satisfaction with care.³⁶

Consultants should communicate directly with the attending physician who is coordinating the care before talking with the family. Parents can become confused and overwhelmed when they receive different portions of information from a variety of providers. If care is complicated or if the ICU stay extends beyond a week, arranging a family care conference that can include more family members and all important members of the care team is strongly encouraged. Care conferences can provide the opportunity for more in-depth discussion and more time for family questions and comments and should be considered a critical aspect of ICU family-centered care.

Respectful Language

All written and verbal communication should be respectful in tone and content; it also should be concise and consistent. Effective and understandable communication between parents and the medical team benefits the child, decreases parental stress and anxiety levels, and is the basis for trust.³⁷ It is helpful to communicate information in a variety of formats.⁴ Information should include an explanation for why some restrictions are necessary (e.g., safety, a sterile environment, and isolation) and why some behaviors are prohibited (e.g., consumption of food in the patient’s room and cell phone use). Table 9-2 provides examples of ways to communicate ICU restrictions without being perceived as being unnecessarily controlling or demeaning. Most families respond positively to guidelines that protect their child, especially when the guidelines are presented with a rationale. Staff should be reminded that most parents have never had experience in an ICU and do not arrive understanding expected behaviors. Questions should be answered honestly in terms families can understand.²⁶ Patients and parents need to be treated as equal partners as much as possible and be allowed dignity and control to the extent that is practical.¹⁶ Respectful language between staff members is important, especially in the presence of family members. Family members who are sleep deprived and stressed may misunderstand conversations that are not respectful. This situation may lead to increased worry or lack of trust in their care providers’ ability to work together as a team or even in their overall competency. Additionally, family members, who often seek information, may listen for inconsistencies by observing disagreements. Its important for the entire team to understand how conversations and language that is not collaborative can be misunderstood.³⁸ Table 9-3 provides examples of ways that problems may be communicated among staff that are less likely to add to patient and family distress.

Table 9–2 Examples of Traditional and Respectful Language Used with Visitors

Traditional Language	Respectful Language
SIGNAGE
Parents only after 8 PM	Visitors are welcome from 10 AM to 8 PM. Parents are always welcome.

No smoking A site for smoking is provided on the first floor outside the entrance. SPOKEN You are not allowed to eat here. Let me show you where you can eat. You need to clean your hands. Let me place that gel where you can reach it. You can’t use your cell phone here. Let me show you where you can use your cell phone.

Table 9–3 Communication Among Staff Promoting Patient and Family Trust

	Not Respectful (Does not Promote Trust of Parents)	Respectful (Demonstrates Collaboration)
RN to MD	You ordered that test wrong.	I was notified that we need to change how the test was ordered; I can show you how.
RN to MD	You ordered a 10 times overdose of morphine.	Can you please change this order? Our typical dose of morphine would be 1 mg for a patient of this size.
RN to MD	You just contaminated your gloves.	Let me grab you a new pair of gloves.
RN to resident	You’d better not wake up that baby; he just got to sleep.	He just fell asleep—would it be possible to examine him later? I can call you.
RN to resident	Why don’t you know how to order this medication?	Do you want to grab your fellow to help you order this medication?
MD to RN	Why didn’t you call me with this result last night?	Please feel free to call me anytime; I would appreciate hearing these results, even if it is in the middle of the night.
MD to RN	Why did you give him so much sedation? He is too sleepy.	How much sedation has he had?
MD to RN	Why did you lose that arterial line?	What happened to the arterial line?
RN to RT	You did not clean your hands before touching the patient.	Let me grab you some hand gel.
MD to family	The nurses should have called me about this; how long has this been going on?	Can you tell me how long this has been going on?