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?

MD, Physician; RN, registered nurse; RT, respiratory therapist.

When English Is not the Primary Family Language

Families who do not speak the primary language of the medical team have considerable additional stress. Expecting them to be able to conduct conversations without a professional interpreter for either in-depth discussions or short updates or questions during the day is an unreasonable expectation. Even families who speak “pretty good English” will have more difficulty than native English speakers in processing new information during this time of crisis. Interpreters are essential in situations in which a language barrier exists.

Care should be taken in choosing an interpreter. The complex medical issues that arise in the PICU require a trained interpreter for effective communication to occur.²⁶ Using another family member as an interpreter is not advisable because it puts undue pressure on that person. In addition, the interpersonal dynamics of their relationships can influence communication and compromise the patient’s confidentiality or may even lead to inaccuracies.^26,³⁹ When an interpreter is not readily available onsite, use of interpretation services by telephone is preferable to use of a family member. It should be the standard of care to provide professional in-person interpreter services at least daily.

Access to Information

Second only to their need to be with their child, parents need easy access to information.^32,⁴⁰^–⁴⁴ In addition to conversations with the health care team, parents should be supported with regard to access to their child’s medical record. Access to the same information available to the other health care team members in the same format encourages trust and cooperation. Having a health care professional available for clarification as needed may be helpful but is not mandatory. Requiring parents to go through administrative or legal protocols to gain access to this information is destructive to the partnership of care. In that environment, ultimately, no matter how conscientiously it is delivered, the care of the child suffers.⁴⁵

Technology

As the public becomes more technologically sophisticated, they expect the same sophistication in the ICU, including Internet access at the bedside. Traditionally, families may have been discouraged from using the Internet to obtain information, but most care providers realize that a large portion of the public uses the Internet as their first source of information. Providers must find a way to partner with parents and, rather than discouraging use of the Internet, work with them to explain what they are finding and provide appropriate sites that include accurate information and are sanctioned by the hospital and/or subspeciality.

In addition, as the public has become more e-mail savvy, they expect rapid communication and a timely response to their questions, regardless of whether an individual provider is present. Some units could allow families to e-mail the attending physician, with time allocated for the physician to respond daily. Furthermore, a growing number of ambulatory care centers provide patients with access to their electronic medical record. This same system could be used for critically ill patients. Although one can imagine challenges that might occur with any given system, providing access to laboratory results, diagnostic studies, and even surgical reports could facilitate knowledge and understanding of particular conditions.^25,⁴⁶

Rounds

Family-centered care can be effectively enhanced by inviting parents to attend and participate in daily multidisciplinary rounds. To ask parents to leave when the multidisciplinary team is focused on their child fosters mistrust and decreases efficiency. Traditionally, parents have been intentionally excluded from rounds, or they have been allowed to stay but not encouraged to contribute. Clinicians have feared that parents may misinterpret information, become concerned about staff competence, delay rounds by asking too many questions, or unintentionally inhibit necessary open and honest communication between health care providers about the patient’s care. Contrary to these concerns, parents’ participation in rounds works well, improving parental satisfaction, patient care, and teamwork.⁴⁷

Family participation in rounds provides an opportunity for open communication for families, patients, and the entire health care team. All team members should be encouraged to contribute information and ask questions. Parents often are excellent historians and keen observers of their child. Parents should be recognized as their child’s expert, having a unique perspective on how their child responds to illness and treatment. Parents also can provide needed continuity with large and constantly changing care teams.³² It is important to orient the parents to the purpose and system for rounds upon admission to the hospital. If rounds are to be the primary contact with health care providers for the day, the parents need to be informed of this so they are prepared to ask questions and to ensure they understand the care being delivered. The team should provide adequate time to conduct rounds if this is the model that is developed. If the model does not provide time for questions from parents, this situation should be communicated to the parents early on so they understand their role and do not become disappointed or frustrated by incomplete communication during rounds. In this case, the attending physician needs to ensure that he or she has time later in the day to meet with the parents.

Shift Report

Traditionally, parents have been asked to leave when nurses make their shift report. The same concerns and benefits related to rounds are applicable here. When concerns about confidentiality or legal issues exist, staff can accommodate the parents by making their report elsewhere. Other than factors relating to legal issues of abuse or neglect, parents have a right to know the details of their child’s care, so information communicated through the report should already be available to the parents, including unplanned events.⁹

Depending on the unit design, concerns may exist about privacy and confidentiality of information when patients are in a shared space (e.g., double rooms and wards). Providers should be sensitive to issues of confidentiality but also should be reminded that parents, who often are present continuously through the day, may be very knowledgeable about the condition of their child’s roommate, just by virtue of being present and overhearing routine conversations of care. Parents also are responsible for protecting the privacy of all patients and for being respectful. Most hospital brochures and parent handbooks speak to this point.

Disclosing Medical Errors

Disclosing errors or unplanned events demonstrates the principle of communicating complete and unbiased information in ways that are affirming and useful. As Levinson ⁴⁸ comments, “Building a relationship in which the patient (and family) feels respected, supported, and trusting is critical to patient and family satisfaction and malpractice risk reduction.” The person delivering these messages needs to follow the same principles that one does when conveying any other difficult news: Tell the parents as soon as feasible in a private setting. Communicate without blame how the error occurred, let them know what to expect, and help them to understand the implication of the error and its effect on their child. Elicit and acknowledge their responses. Parents should be reassured that everything will be done to prevent the incident from recurring. Clearly communicate any plans for follow-up, which includes identifying a contact person. All medical errors, even those that have minor or no effects on the child, should be reported.

Multidisciplinary Team

A variety of disciplines are needed in the care of any critically ill child. The components of the team are dependent on the needs of the child, although a physician and nurse are always included. The assignment of a consistent physician and nurse has been shown to decrease parental stress.³³ This assignment may be difficult to accomplish, particularly during an extended ICU stay; however, every effort should be made to ensure health care provider continuity. In the course of a child’s stay in the PICU, the family will meet many team members. It is important for everyone to understand that any of these team members can become the family’s primary source of support. In complex situations, the multidisciplinary team may become quite large and may contribute to family stress. The family should be encouraged to keep a written record of health care providers for clarity. In certain complex situations, establishing a continuity attending physician may be helpful. Regular care conferences also may be helpful in these circumstances.

Social Worker

Social workers are integral members of the health care team, and all parents should have access to a social worker.²⁸ This individual may be a member of the PICU team or part of a continuity team based on a specialty, such as cardiology, oncology, or organ transplantation. Often PICU admission, critical illness, and trauma are not anticipated and parents are unprepared for the turmoil they are thrown into. Having a social worker available who can provide crisis intervention and assist families in understanding the implications and complexities of the medical situation and the PICU is extremely important. Feelings of helplessness and an overall feeling of being out of control are common among parents,⁴⁹ and the social worker’s ongoing supportive care, grief/bereavement counseling, and provision of concrete needs are critical in alleviating some of their stress. The social worker can be available consistently, can educate the family regarding how the PICU works, and often serves an important role as a liaison between families and the medical team. Social workers can be advocates for parents as they help them address the special needs of their child and family with the team.

The social worker’s initial and ongoing psychosocial assessment of the family can help the medical team provide culturally appropriate and family-centered care. The social worker also provides a liaison with community resources, child protective agencies, and law enforcement when necessary.

Chaplain/Spiritual Care

The chaplaincy service carries an important role in providing respectful spiritual care and emotional support to patients, families and staff. This may take place through conversation and listening, rituals, prayer, help in ethical decision making, and bereavement support. They can offer Interfaith opportunities for worship, celebration, reflection, and spiritual exploration. They can also provide assistance with contacting a local or hometown faith community or minister, priest, rabbi, or other spiritual leader.

Child Life Specialist

A child life specialist (CLS) should be available to all critically ill children.²⁸ Factors associated with the highest stress for parents include disruption of normal interactions with their child, changes in their child’s behavior or emotions, parents’ inability to comfort their child, and having a child undergo painful procedures.²⁶ The CLSs are members of the health care team who work directly with patients and families to help reduce anxiety and adjust to the hospital experience. A CLS can provide support and create a coping plan with patients to use during a medical test or procedure. They utilize therapeutic and medical play to help patients understand medical procedures and provide ways to express feelings and help maintain a sense of control. A CLS can teach coping techniques, such as distraction, guided imagery, and story telling, as a means to reduce pain and anxiety.⁵⁰ Bedside activities can be provided to support a child’s need to play. A CLS can work with community resources, schools, and in-home care personnel to assist with the child’s transition after discharge from the hospital.

Pet Therapist

Pets are considered by many persons to be part of the family. They provide emotional support for many people, particularly in times of stress or illness. There is growing support of animal-assisted therapy in many areas of health care, including critical care, as a complementary therapy.⁵¹ Benefits for patients include an increase in positive outlook, stress reduction, normalization of the hospital environment, and overall feelings of comfort and happiness.

In general, there are two main approaches to pet therapy in the ICU. The first incorporates the family pet, and the second makes use of a professional or therapy dog. Incorporating the family pet into the child’s hospital stay meshes well with the concept of family-centered care. Pets have a significant effect on humans by lowering stress, stabilizing the heart rate, and improving mood. Pets have been shown to prevent depression.⁵²^–⁵⁵ Many cases have been reported of critically ill patients responding to pets in a positive way, such as by becoming more interactive and willing to participate in their own care and recovery.

It may not always be feasible for a child’s pet to visit because of distance, the animal’s temperament, or other logistical realities. An alternative to having the patient’s own pet visit is the presence of a professional or therapeutic animal. Although the emotional tie to the therapeutic animal will not be present, benefits similar to those seen with the patient’s personal pet can be observed.

Parent Advisory Council/Family as Consultant

One of the principles of family-centered care is the collaboration of providers with patients and families.¹⁷ As expert “consumers,” families bring an experiential perspective and creative solutions that help advance the best possible care.^22,⁵⁶ Many hospitals have created Family Advisory Councils composed of parents who have had a wide variety of health care experiences. They advise the hospital on how it can more effectively meet the needs of children and their families. Additionally, they can provide recommendations and feedback on policy, programs, and organizational changes that affect the family experience. Family “consultants” can be used at the unit level for a variety of activities (Box 9-1).

Box 9–1 Family Consultant Activities

• Teacher/orienter of new nursing or medical staff by sharing stories and answering questions about the experience as a parent in the PICU

• Author and analyst of satisfaction surveys

• Member of focus groups that are considering changes in service delivery

• Co-leader of a parent support group

• Consultant on orientation materials for families

• Consultant for PICU remodel or redesign team

• Committee member for relevant topics, such as ethics or quality improvement

Parent Support Group

While their child is in the PICU, parents naturally seek the understanding of other parents in similar circumstances. Availability of parent support groups can meet this need.^20,^57,⁵⁸ These groups may be led by a trained parent volunteer and/or a professional. Participation can help to normalize the hospital experience by providing an opportunity to share stories in a supportive environment. Other more structured parent support groups and sibling groups meet regularly and usually are convened around a specific population, such as organ transplant, cancer, or bereavement.

Volunteers

Volunteers play an important role in providing normal activities for ill children. They can engage in distraction and quiet play, such as reading or watching a movie, or more active play, such as games and crafts.³¹ Volunteers also can be trained to perform more advanced tasks. For example, volunteers who receive training in crisis intervention can staff the waiting room. Another example of the use of volunteers can be found at Children’s Hospital in Seattle, Washington, where volunteers in an “Aunties/Uncles” program develop and maintain an emotional, nurturing bond with a specific hospitalized infant or child when the parents are unable to provide that time at the bedside. These specialized volunteers commit to spending 5 to 6 days per week at the hospital for a minimum of 6 months. Parents give their permission for this surrogate to be with their child.

Financial Services

Although paying the bill usually is not the concern of the health care team, it may be a serious stressor for a parent in the PICU. This added stress can affect the parent’s ability to make careful decisions. In some cases, parents may worry that their child will not receive the best care because of their limited financial resources. Recognition of socioeconomic constraints such as the inability to pay for care or to be away from work and trying to alleviate these hardships are important aspects of family-centered care.¹⁶ Providing a financial counselor who can coordinate care with insurance carriers and identify alternative sources for payment can greatly reduce the anxiety of the parents.

Ethicist

Ethical dilemmas are inherent in modern medical practice and are frequently identified in the PICU. That said, a large proportion of what appear to be ethical dilemmas are frequently failures in communication, both between staff and between staff and the family. Improving communication at all levels and at all times will greatly help to prevent and reduce disagreement and the need for ethical intervention. For true ethical dilemmas, training staff in ethical principles and having an ethicist as part of the core multidisciplinary team can foster open discussion and resolution of difficult issues for the entire team, which includes the family.⁵⁹ Whenever possible, it is most beneficial to have an ethicist present on a regular basis rather than only during a crisis. Because ethical concerns are recurrent, having a familiar person with whom to consult is a way to be supportive of staff and families.

Palliative Care

Pediatric palliative care services complement other health care goals and should be widely available in the PICU. Palliative care teams care for a wide variety of patients and ideally become involved at the time of a life-threatening diagnosis.^33,⁶⁰ Palliative care resources are not limited to end-of-life issues and hospice care. In fact, palliative care complements cure-directed therapies. Because of the misconception that palliative care is limited to end-of-life issues, many pediatric palliative care teams around the country are changing their names to Pediatric Advanced Care Teams. The trained palliative care expert can facilitate discussions between the medical team and the family that takes into consideration the preferences and values of the family, medical indications (benefits and risks), quality of life, and contextual issues such as cultural, spiritual, and community supports. This discussion is coordinated with health providers and family members, resulting in the completion of a comprehensive decision-making tool. This tool sets the care plan, which follows the patient through his or her illness to the return home.⁶¹ This document, which is revised as needed, allows for earlier coordination in the hospital and within the community, resulting in more consistent and compassionate care on all levels. In complex situations, the palliative care team member can provide excellent continuity of care, both within the PICU and beyond.

Access Concepts

Access to their child is probably the single most important issue for a family with a hospitalized child.^1,^3,^5,^9,^32,^41,⁶² For the child, the family provides a reassuring constant in the unfamiliar PICU environment. To mitigate the anxiety experienced by families in crisis and the displacement of parental roles, access should be supported 24 hours per day, with clear communication related to the importance of parental involvement. Parents should be viewed as partners in care rather than visitors. Additionally, to the extent possible within the constraints of the medical care, parents should be given every opportunity and encouragement to have physical contact with their child. Parents can be leery of medical technology, and staff should help them overcome this uneasiness.

Admission Process

The admission process can be frightening for the parents and child, especially in cases of emergent or unplanned admissions.⁶³ Every effort should be extended to help the parents acclimate to the new environment with compassion, courtesy, and time. Parents report a loss of control, which can be unbearable when they are separated from their ill child. To support the child and the parents, caregivers should invite the parents to be part of the admission process and support them in their desire to remain with their child.^1,^21,^32,⁶³^–⁶⁵

If parents cannot be directly at the child’s bedside because of space limitations or caregiving tasks, a space should be provided for the parents where they can see their child. They usually understand the need to be away from the bedside in this instance and, upon being given a brief explanation and a dedicated space near their child, they usually are tolerant of the separation. As soon as feasible, a caregiver should provide the parents with some initial brief information. Because anxiety greatly affects short-term memory, it often is difficult for stressed parents to take in detailed information early on. Once the child is stabilized and caregivers have more time to devote to the parents, caregivers can sit down with the parent, either at the bedside or in another confidential space, to provide more information.

The initial information given to parents should include the condition of the child, what has been done so far, and the plan of care. Parents often request a prognosis as well. When done well, this discussion is a predictor of later comprehension of what is communicated by the health care team.²⁷ Once the child is stabilized and the parents have spoken with the physician, cues can be taken as to when the parents are ready for a general orientation to the unit (Box 9-2). For a scheduled stay in the PICU, this orientation can most effectively be done prior to the admission.⁶⁶

Sibling Participation

Siblings are an important but often overlooked part of the process of adjustment for patients and families to hospitalization. Sibling presence at the bedside should be supported based on the needs of the patient, parents, and sibling.^9,⁶⁷^–⁷¹ Siblings have not always been welcome in the PICU, although the concern that young siblings pose a greater infectious risk to the patient than do adults was disproved in the 1980s. Some persons fear that siblings will become frightened by what they see. However, siblings often appear to accept the environment better than do some adults. Often the sibling’s imagination about the condition of an ill brother or sister is much worse than the reality. During an initial visit by siblings, time should be spent preparing them, the parents, and the patient for the hospital experience.⁶⁷ Any trained team member can prepare the family, but the preparation might be most effectively done by a social worker or CLS. The patient’s condition should be explained to the sibling so the interpretation is not left up to the child’s imagination. It often is helpful to show the siblings a photo of the patient and the room and discuss what will be seen. This step helps prepare siblings for what they will see. Siblings should be allowed and prepared to visit, but they always should be asked if they want to change their mind, and their decision to decline a face-to-face contact should be respected. During the visit, a clinician should be available to support the siblings and answer questions. Following a visit, a short debriefing is helpful to answer additional questions and support siblings in expressing their feelings. Providing materials for the child to prepare a memento, such as a card or drawing, to be left at the bedside can be therapeutic for the entire family.

Family Space

Family-centered care principles can be demonstrated by the physical setting.^33,^43,^72,⁷³ The patient’s bedside should include dedicated space for families. The space should include an area where parents can sleep so they can stay overnight if they wish, storage, individualized lighting, and a phone with voice mail and computer access. Additional support space can include sleeping facilities in close proximity to the PICU. Parents should have access to shower and laundry facilities, a cafeteria, and transportation.²⁰

Participation in Care

Parents are better able to cope when their role as caregiver is maintained.^1,^6,^7,^21,^43,^64,^69,^74,⁷⁵ Staff are accustomed to providing all the care for their patients, and they often feel that parents expect this care. Yet for many parents, the provision of such care can be alienating because they may feel incompetent to care for their own child. Staff can help parents provide care for their child, thus promoting the parent-child bond and improving the self-esteem of the stressed parent.⁷ Staff, especially nurses, can collaborate with parents in defining the kind of care both parents and caregivers are comfortable in providing. Parents may feel frightened by their child’s appearance or overwhelmed by the technology, and they require assistance in developing their new role as parents of a critically ill child. Part of routine care in the PICU should include the education of parents on the technology attached to their child, such as monitors. Traditionally, some nurses have encouraged parents to ignore the monitor or not pay attention to it, trying to get the parent to focus on their child and not be concerned about every beep and alarm. It is very difficult for parents to disregard these devices that are attached to their children, and not educating families has been shown to increase their stress level.⁷⁶ The clinician can be most effective by clearly communicating safe and appropriate care for the individual patient and modeling the behavior. This modeling may be as simple as holding the child’s hand and helping the parent to do the same. Parents can participate more actively as well. They can be given options, such as assisting with bathing, positioning, or massage.

Procedures

Clinicians may have concerns about parents’ presence during procedures, but a growing body of evidence demonstrates that parents want to be present, and this approach generally works well.⁷⁷^–⁸⁵ In academic hospitals where junior staff are learning how to perform procedures on patients, clinicians may feel uncomfortable with parents observing. Because the teaching process will occur whether or not the parents are present, it is honest to support the parents’ presence if that is their preference.^9,⁸² As with any event, the parents should be prepared for what to expect. In addition, parents should be told who will be performing the procedure, any teaching that will take place, how the parent can support the child, and where in the room they can safely remain.

When the parents choose not to stay or cannot be present, they should be provided a comfortable place to wait that is close to the PICU. There should be a plan for communicating with the parents during the procedure and at its conclusion. If the child will be sedated for the procedure, the parents should be allowed to stay with the child until he or she has been sedated and then brought back to the bedside at the conclusion of the intervention.

Resuscitation

Clinicians have expressed a number of concerns related to parental presence during their child’s resuscitation (Box 9-3). However, increasing evidence and a wealth of clinical experience supports the parents’ presence.^14,⁸²^–⁹⁵ Parents may wish to be present even during resuscitation. Preparing them for what they will see is an important aspect of supporting them so they can be at the bedside. One of the primary benefits is that the parents can see that every effort was made to save their child. Often when parents are not allowed to be present, their imagination of what is happening behind closed doors is worse than the reality. They may come to mistrust the team and begin to question what really happened in their absence. Additionally, parents may believe their presence gives their child strength and that it is important that they be with them spiritually. Parents come to trust the health care team more because they witness the team working together in a common effort to save their child. Even in cases in which resuscitation fails, the partnership developed between the parents and health care providers previous to and during the resuscitation can be helpful for the parent’s acceptance of the child’s death.^96,⁹⁷

Box 9–3 Clinicians’ Cited Concerns/Fears Regarding Parents’ Presence During Resuscitations

• Interference with the resuscitation

• Misinterpretation of the team’s performance

• Liability risk

• Team competence questions

• Familial emotional injury

• Staff uncomfortable with grieving family members present

• Distraction, lack of concentration by medical team

It is important that parents be given a choice of whether to be present. In all cases, a staff member should be assigned to the parents to explain the care being given to their child. Ideally the parents should be familiar with this caregiver, but this scenario may not be possible, nor is it essential. The caregiver should give brief explanations of what is occurring, answer questions, and act as a liaison between the resuscitation team and the parents. This individual should be focused on the parents and not be directly involved in the resuscitation. Because most units have preassigned roles for resuscitations, one should be designated for parental support. Finally, families should be offered the opportunity to be alone should they feel the need.

In some units, the parents of other patients are asked to leave the area when a resuscitation is occurring. This practice should not be routine unless space is extremely limited and the parents would interfere with the ability of the team to deliver the care. Parents should stay with their own child so that they can comfort them in the midst of what is happening around them. It can be frightening when a child is separated from a parent and is left behind, unsupported, during a crisis. Parents can be helpful by staying with their child if staff are pulled to another bedside to assist with an emergency. Parents also can share in the experience with their child and provide ongoing and future support related to the event.

Transferring out of the Pediatric Intensive Care Unit

Transfer from the PICU can be a time of anxiety and uncertainty. Families experience loss when they leave caregivers with whom they have developed relationships during crises. Among the fears reported by patients and families is not knowing what to expect from unknown caregivers. Additionally, they report anxiety related to the higher patient-to-nurse ratios and leaving an area where every patient physiologic event is closely monitored. The family can benefit from a variety of approaches to allay their anxiety, all geared toward providing encouragement, information, and inclusion in the process.⁹⁸^–¹⁰¹

If the child has been in the PICU for an extended period or the parents are particularly anxious, a care conference can be arranged with staff from the receiving unit to delineate who will be caring for the child when the child is transferred, discuss the goals of care, and answer any questions the parents may have. PICU staff should be careful to speak positively about staff in other areas of the hospital and reassure families about their competence in handling emergencies.¹⁰⁰ Written information about the transfer has been shown to significantly reduce parental anxiety about imminent transfer from the PICU.⁹⁸ Other potential interventions for improving the transition for families, especially those with long ICU stays, are noted in Box 9-4.

Box 9–4 Activities to Prepare for Transfer

• Initiate transfer process early

• Remove monitor well before transfer if the patient will be off a monitor in the receiving unit

• Identify a primary nurse prior to transfer who will meet with the family to help them plan their involvement in the patient’s care

• Conduct a tour of the receiving unit

• Provide written information prior to transfer, including descriptions about the receiving unit and its staff

• Assign a PICU liaison check-in with the family after the transfer

Compassion Fatigue

The very nature of the work in the PICU puts care providers at increased risk of burnout and compassion fatigue (also known as vicarious traumatization). These two syndromes can affect the care provider’s mental and physical health, contribute to impaired job performance and lower team moral, and even lead to suboptimal quality of care, medical errors, and lower patient and family satisfaction.¹⁰² To cope with the difficult nature of this work, many care providers distance themselves emotionally from their work. Care providers can develop detached responses to families and their experiences and suffering because of the perception that detachment protects against burnout and compassion fatigue.¹⁰³ Contrary to this belief, a recent study found that a practice called exquisite empathy, described as “highly present, sensitively attuned, well-boundaried, heartfelt empathic engagement,”¹⁰⁴ actually was protective against burnout and compassion fatigue.¹⁰² To provide optimal family-centered care in the PICU, it is imperative to learn about these syndromes, educate staff, employ organizational changes, and encourage staff self-care practices to mitigate symptoms.

References are available online at http://www.expertconsult.com.

References

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2. Craft M.J. Effect of visitation upon siblings of hospitalized children. Matern Child Nurs. 1986;15:47.

3. Giganti A.W. Families in the pediatric critical care: the best option. Pediatr Nurs. 1998;24:261.

4. Hickey M. What are the needs of families of critically ill patients? A review of the literature since 1976. Heart Lung. 1990;19:401.

5. Hickey P.A., Rykerson S. Caring for parents of critically ill infants and children. Crit Care Nurs Clin North Am. 1992;4:565.

6. LaMontagne L.L., Pawlak R. Stress and coping of parents of children in a pediatric intensive care unit. Heart Lung. 1990;19:416.

7. Miles M.S., Carter M.C., Hennessey J., et al. Testing a theoretical model: correlates of parental stress responses in pediatric intensive care unit. Matern Child Nurs J. 1989;3:207.

8. Powers P.H., Goldstein C., Plank G., et al. The value of patient- and family-centered care. Am J Nurs. 2000;100:84.

9. Wincek J.M. Promoting family-centered visitation makes a difference. AACN Clin Iss. 1992;2:293.

10. Roberts A.R., editor. Crisis intervention handbook: assessment, treatment, and research. Belmont, CA: Wadsworth, 1990.