Caring for Critically Ill Children and Their Families



11


CARING FOR CRITICALLY ILL CHILDREN AND THEIR FAMILIES


Jodi E. Mullen and Mary Frances D. Pate






AJ was almost 2 years old and had never been in the hospital. In the weeks before admission, his parents noticed that he was holding his head to one side and resisting efforts to straighten it. AJ was also becoming ataxic. A few days before admission, he experienced emesis and became lethargic. His parents were frightened when they were told that AJ had a malignant brain tumor. He was admitted to the pediatric intensive care unit (PICU) after craniotomy for removal of the tumor, was medically stable, and required routine postoperative care. The morning after surgery, AJ was awake and looked around but avoided eye contact. He refused to smile or to pay attention to books or toys. He held his special blanket close to his face. His eyes were huge under the gigantic turban of gauze and tape. With pain medication, he relaxed somewhat but still refused to interact with his nurse.


AJ initially brightened when his mother arrived but showed little interest in her efforts to beguile him. Because AJ was preverbal, it was impossible for him to tell us why he was so unhappy. As his mother talked, she stated that AJ was one of four boys. His oldest brother was almost 5 years old, the next boy was 3 years old, and AJ had a twin brother, NJ. The boys’ father was at home with them until grandparents arrived from another state to help with their care.


AJ’s mother was assured that the children were welcome to visit and that the certified child-life specialist would help them understand what to expect before coming into the unit. When the rest of the family arrived, AJ was observed closely. The sight of his father and older brothers elicited a response similar to that of his mother’s arrival, but when AJ saw his twin brother, a metamorphosis occurred. When twin NJ saw AJ, he broke loose from his father’s hand and ran to the bed. It was suggested that his mother pick up NJ and place him on the bed next to AJ, at which time AJ became a “new man.” He sat up straight, looked around the room, and smiled with his nurse and his entire family. AJ’s twin had brought Mylar balloons, and within minutes both AJ and NJ were hitting the balloons and laughing out loud. AJ’s mother later expressed her feelings about the encounter. When she and AJ’s father had seen the change in their son, they were able to remain hopeful about their ability to face the future. Their need, at that time, was for their family to be together. AJ’s special need was to be with his twin brother.


Regardless of the anticipated outcome, admission of a child to the PICU is a highly stressful event for families. Effective pediatric critical care nurses see the child and family as an integral unit that is central to the healthcare system and are perceptive to the needs of the entire family as they move through the crisis. Nurses who view patients and families as partners in care acknowledge both the psychosocial and physical needs of the developing child and family. When guided by the American Association of Critical-Care Nurses (AACN) Synergy Model for Patient Care, nursing practice places the patient’s and the family’s needs as its central or driving force. When nursing competencies are based on these needs, optimal patient outcomes result (Curley, 2001). By practicing within the Synergy Model for Patient Care, the pediatric critical care nurse can articulate how he or she contributed to the patient’s outcomes.


THE SYNERGY MODEL FOR PATIENT CARE



The AACN Synergy Model for Patient Care was initially developed by the AACN Certification Corporation to serve as the foundation for certifying critical care nursing practice (AACN Certification Corporation, 2015; Hardin & Kaplow, 2017).


A.    Core Concepts


The following are core concepts of the Synergy Model for Patient Care:



1.    The needs and characteristics of patients and their families influence and drive the competencies of the nurse.



2.    Synergy occurs when individuals work together in ways that move them toward a common goal.



3.    An active partnership between the patient and the nurse will result in optimal outcomes.


2B.    Patient and Family Characteristics


Every patient and his or her family bring a unique set of characteristics to the care situation. Each characteristic exists along a continuum, and the patient can fluctuate along that continuum as his or her needs evolve over time.



1.    Stability. The ability to maintain a steady state



2.    Complexity. The intricate entanglement of two or more systems (body, family, therapies)



3.    Predictability. A collective characteristic that allows the nurse to anticipate the patient moving along a certain illness trajectory



4.    Resiliency. The capacity to return to a previous level of functioning



5.    Vulnerability. Susceptibility to stressors that may affect outcomes



6.    Participation in Decision Making. The extent to which the patient and family participate in decision making



7.    Participation in Care. The extent to which the patient and family can participate in care



8.    Resource Availability. Resources (e.g., personal, financial, social) the family brings to the care situation


C.    Nurse Competencies


Nurse competencies are driven by the needs of the patient and family. These competencies reflect the integration of nursing knowledge, skills, and experiences that are required to meet the patient’s and family’s needs and to optimize their outcomes. Each competency has different levels of experience ranging along a continuum from novice to competent to expert practitioner. Although the competencies, as a whole, reflect the entirety of nursing practice, each competency becomes more or less important depending on the patient’s needs at the time.



1.    Clinical Judgment. Clinical reasoning and critical thinking skills



2.    Caring Practices. Creating a therapeutic environment based on the unique needs of the patient and family



3.    Advocacy/Moral Agency. Working on another’s behalf; resolving ethical concerns



4.    Collaboration. Working with others in a way that encourages each person’s contribution toward the patient’s goals



5.    Systems Thinking. Recognizing the interrelationship within and across healthcare systems



6.    Response to Diversity. Recognizing and incorporating differences into care



7.    Clinical Inquiry. Ongoing questioning and evaluation of practice



8.    Facilitator of Learning. Facilitating patient and family learning


D.    Outcomes


Optimal outcomes result when the patient characteristics and nursing competencies are matched. Because the Synergy Model for Patient Care views the patient and family as active participants in the model, the outcomes measured should be patient and family driven. The following are examples of potential outcomes to be measured (Curley, 2001).



1.    Outcomes from a patient perspective



a.    Functional change



b.    Behavioral change



c.    Trust



d.    Satisfaction



e.    Comfort



f.    Quality of life



2.    Outcomes from a nursing perspective



a.    Physiologic changes



b.    Presence or absence of complications



c.    Extent to which treatment objectives are obtained



3.    Outcomes from a system perspective



a.    Costs



b.    Rehospitalization



c.    Resource utilization


The following case study illustrates the use of the Synergy Model for Patient Care in practice:


DK, a 9-year-old male, was diagnosed with asthma at the age of 4. He presented at the emergency department with a 24-hour history of increasing difficulty breathing, wheezing, and coughing. DK has been hospitalized once or twice a year since diagnosis and has been in the PICU on three occasions. He was placed on continuous oxygen and nebulized aerosol therapy and was admitted to the PICU for further observation and care. DK was admitted within the past hour and a physical assessment had been completed. In addition, he was 3evaluated from a nursing perspective using the Synergy Model for Patient Care. According to the patient characteristics of the model, he could be described as follows.


Stability


DK was moderately stable. He was currently able to maintain a steady state but had the potential of deteriorating. He was receiving oxygen, aerosol treatments, and intravenous (IV) fluids. He was tachypneic and tachycardic and had moderate work of breathing.


Complexity


DK’s case was mildly complex. Currently, only one body system was affected. His family system was relatively uncomplicated; his mother was a single parent and DK had two younger siblings, aged 7 and 4 years.


Predictability


DK’s condition was moderately predictable. He was moving along the expected course of his illness. Although he has been in the PICU on three previous occasions, he had not required mechanical ventilation and had always improved as expected once therapies were initiated.


Resiliency


DK was highly resilient. He had no other underlying conditions that would complicate his situation and had demonstrated previously that he could return to his usual level of functioning.


Vulnerability


DK had a low level of vulnerability. He was only mildly susceptible to stressors that might affect his outcome. This susceptibility was influenced by his history of asthma, previous medication regimen, and young and relatively healthy physique.


Participation in Decision Making


DK and his mother both had a high level of participation. He was alert and asking questions and had a fairly good understanding of his condition and what would help him get better. His mother was present and asking appropriate questions.


Participation in Care


DK and his mother both had a high level of participation in care. His mother had made care arrangements for her other children so as to allow her to remain at the hospital with DK. She was informed about our unit’s family-centered care philosophy and invited to participate as a partner with staff in DK’s care.


Resource Availability


DK and his mother had moderate resource availability. His mother expressed some financial concerns related to recently changing jobs and not yet having health insurance for her family. In addition, the family car had broken down and they were relying on public transportation. She did have an extended family that was supportive of her situation and her son’s medical needs.


By having a holistic picture of DK and his family’s characteristics, nurses were able to think about what nursing competencies would be an important match for improved patient outcomes. Although all the competencies are important, some would be more valuable in this situation. Nurses would need to rely on strong clinical judgment skills to monitor DK for improvement or worsening of his condition. Nurses would use caring practices to create a therapeutic environment for this family, and nurses would be vigilant to prevent complications from DK’s therapies and the hospitalization itself. Nurses would use collaboration skills when working with him and his mother and also in determining whom to consult to help with the family’s financial and transportation needs. Finally, nurses would be a facilitator of learning by ensuring that DK and his mother received additional asthma education.


Outcome goals were discussed with DK and his mother, and we agreed that satisfaction with care, absence of complications, and progressive improvement with discharge from the PICU and, eventually the hospital, were important.


CHILDHOOD DEVELOPMENT: PSYCHOSOCIAL, EMOTIONAL, AND COGNITIVE FACTORS



Knowledge of normal growth and development and the ability to assess the child’s developmental level are crucial to working effectively with children and parents in any healthcare setting. Historically, children used to be viewed as small adults. Pediatric nurses now understand that using a developmental perspective is the ideal norm. Those who experience children as individuals at a particular level of development find caring for children a rich and rewarding adventure.


The following section describes general childhood developmental concepts. Individual differences exist, and these stages serve as a general guide for the nurse. Erikson’s stages of psychosocial development, 4Freud’s theory of personality development, and Piaget’s stages of cognitive development are summarized.


A.    Developmental Stages in Infancy (0–12 Months)



1.    Psychosocial Development: Trust Versus Mistrust. Infants develop a sense of trust when their basic needs for affection, security, and survival are satisfied. Older infants may fear an unfamiliar person and may not want to be held or approached by a stranger.



2.    Personality Development: Oral Stage. Sucking provides the major source of enjoyment.



3.    Cognitive Development: Sensorimotor Stage. Reflexes are gradually replaced with voluntary behaviors. Infants learn to differentiate themselves from others. Infants begin to develop object permanence at 4 to 8 months. Security objects may alleviate anxiety responses in older infants. For instance, infants use their parents as a social reference; that is, by looking at their mother or father, infants determine how to react to new and unfamiliar situations.


B.    Developmental Stages of Toddlers (1–3 Years)



1.    Psychosocial Development: Autonomy Versus Shame and Doubt. Toddlers gradually develop the ability to control their bodies and begin to seek independence. When frustrated or when their need for independence is thwarted, toddlers can express themselves through negativism, temper tantrums, and physical resistance. At times, older toddlers are eager to please adults. Toddlers learn through sensorimotor experiences.



2.    Personality Development: Anal Stage. Toddlers learn bladder and bowel control. They have an egocentric view of life.



3.    Cognitive Development: Sensorimotor Stage Matures to Preoperational Stage. Toddlers exhibit egocentric development and increased use of language. In addition to early memory development, toddlers develop a sense of time as it relates to their daily routine of meals, naps, and playtime.



4.    Concept of Death. Toddlers view death as a temporary event and may continue to act as though the dead person is still alive.


C.    Developmental Stages of Preschoolers (3–5 Years)



1.    Psychosocial Development: Initiative Versus Guilt. Preschoolers begin to develop the superego and learn right from wrong. They have a strong need to explore the environment. Preschoolers may feel guilt or fear in response to inappropriate thoughts or actions. Many preschoolers are eager to conform to adult expectations.



2.    Personality Development: Phallic Stage. Preschoolers develop a beginning gender awareness and identify with the parent of the same sex.



3.    Cognitive Development: Preoperational Stage (2–7 Years). The preschooler’s vocabulary increases, and magical thinking is used. Preschoolers communicate through play and have vivid imaginations. They are unable to see anyone else’s point of view at this stage of development.



4.    Concept of Death. Death is viewed as temporary. Preschoolers may say that someone is “dead” without any understanding of the finality of death. Preschoolers may fear death as a separation from someone they love, as being injured, or as a punishment for misbehavior.


D.    Developmental Stages of School-Age Children (6–12 Years)



1.    Psychosocial Development: Industry Versus Inferiority. School-age children have a need to develop a sense of achievement and competence and are usually willing and eager to cooperate.



2.    Personality Development: Latency Period. Development of the superego continues, and school-age children gain a greater understanding about what is right and wrong.



3.    Cognitive Development: Concrete Operational Stage (7–11 Years). School-age children begin to use logic in thought and can consider another person’s point of view. Language and problem-solving abilities improve. Rules, rituals, and conformity are important to school-age children because they provide order to their world. They expect others, including parents, to obey the rules and will complain if something seems “unfair” to them.



4.    Concept of Death. Early-school-age children still believe death is temporary and may view it as scary or violent. Older school-age children understand death as permanent and inevitable.


E.    Developmental Stages of Adolescents (12–18 Years)



1.    Psychosocial Development: Identity Versus Role Confusion. Teens are often preoccupied and frequently are dissatisfied with their physical appearance. The adolescent years are a time of emotional 5struggle for independence as the teen searches for a personal identity.



2.    Personality Development: Genital Stage. This stage begins at puberty with the development of secondary sex characteristics and sex hormones. Teens display frequent mood swings with emotional lability. Teens often fluctuate between wanting to be with their family and avoiding their family.



3.    Cognitive Development: Formal Operational Stage. The ability to use abstract thinking begins in the early teens. Logical thinking becomes more developed, although teens may retain some magical thinking as well. For example, they may feel that an illness is a punishment for something they did. Use of verbal communication increases.



4.    Concept of Death. Teens understand death as permanent and inevitable but as something that will occur only in the distant future.


DEVELOPMENTALLY APPROPRIATE ASSESSMENT OF CHILDREN



Children usually respond well to honesty, gentleness, and respect. Most children want to please their parents and other adults as well.


A.    General Principles for Working With Children



1.    Introduce Yourself to the Child and Family. Include the child in conversation even if the child does not seem to be responding. Children may not respond verbally but will listen to everything that is said and decide how much comfort or danger the situation holds for them. Assure the child that it is all right to talk or not to talk.



2.    Honesty Is Vital to Establishing a Trusting Relationship With Children. Be honest with the child if the procedure will hurt. To deny that something will hurt and then do something that causes the child pain could destroy the possibility of establishing a trusting, cooperative relationship with that child. Admit that you do not know the answer if the child asks a question you cannot answer. Promise to try to find the answer.



3.    Make Eye Contact and Address the Child by Name. The child may not return eye contact, but can still be listening intently.



4.    Stoop or Bend to Communicate at the Child’s Eye Level When Possible.



5.    Allow the Child to See Your Hands and Any Instruments You Will Use. If possible, allow the child to touch and examine the instruments because this will tap into his or her curiosity. Most children are cooperative if they know you are not planning a painful procedure.



6.    Allow the Child to Make Choices Whenever Possible, But Avoid Giving the Child Artificial Choices. For example, do not ask permission to measure the child’s blood pressure unless you are prepared to respect his or her choice if the child refuses. Simply state what you need to do in a gentle but matter-of-fact manner and do it. Examples of realistic choices include desired Popsicle flavor and choice of video game to play.



7.    Allow the Parents to Participate in the Child’s Care Whenever Possible. Some procedures can be accomplished with the child sitting on a parent’s lap or in a position of comfort, such as a hug.



8.    Use a Calm, Soothing Voice.



9.    Encourage the Family to Bring the Child’s Favorite Articles From Home.


B.    Principles for Working With Infants



1.    Before touching the infant, assess affect, color, level of consciousness, and respiratory rate and effort because changes can occur in these parameters when the infant is touched. Infants express their distress in physiologic and behavioral ways.



2.    When possible, perform the assessment while a parent is holding the infant.



3.    Warm the stethoscope and other appropriate instruments before use.



4.    Smile and speak softly to the infant before touching and during the examination.



5.    Bright objects may be useful as a distraction.



6.    Start the examination with the least invasive process, such as listening to breath sounds, and end with more invasive processes, such as examining the ears.


C.    Principles for Working With Toddlers



1.    Assess affect, color, level of consciousness, and respiratory rate and effort before touching the toddler.



2.    Name each body part for the toddler as you examine it.



63.    Make the experience fun by drawing faces on tongue blades.



4.    The toddler will feel more in control if allowed to sit up and to hold a security item.



5.    Allow the toddler to inspect and touch the equipment.



6.    Before approaching the toddler, demonstrate the equipment on a doll, a stuffed toy, or the toddler’s parent.


D.    Principles for Working With Preschoolers



1.    In simple terms, explain what you are doing as you progress through the assessment.



2.    Praise the preschooler frequently, and make the experience fun.



3.    Allow the preschooler to inspect and touch the equipment.



4.    Demonstrate the equipment on a doll, a stuffed toy, or the preschooler’s parent.



5.    Avoid holding your hands behind your back because preschoolers may wonder what you are hiding.



6.    Avoid using words or phrases like “cut,” “take,” “broken,” or “put you to sleep.”


E.    Principles for Working With School-Age Children



1.    Speak directly to the school-age child, explaining what you are doing and why.



2.    Take time to listen to the school-age child.



3.    Allow the child to ask questions. The school-age child can understand simple bodily functions, so incorporate this knowledge into the answers.



4.    Accord the child respect, privacy, and dignity.



5.    Encourage as much mobility as possible to help reduce stress.



6.    As appropriate, allow the child to help with the examination.


F.    Principles for Working With Adolescents



1.    Respect the adolescent’s desire for privacy, and avoid unnecessary physical exposure.



2.    Give adolescents the choice of whether or not they want their parents to be present.



3.    Explain what you are doing and why.



4.    Encourage teens to discuss their concerns, and include them in decision making regarding their health and illness.



5.    Teach the adolescent about normal physical and sexual development.



6.    Facilitate visits with peers when possible.


G.    Principles for Working With Adolescents as Parents



1.    Affirm the role of an adolescent parent as “mom” or “dad.”



2.    Discourage grandparents or other relatives from usurping the parent’s control.



3.    Teach the adolescent parent about normal child development, nutrition, discipline, and care.



4.    Assess the parent’s level of understanding, and teach without condescension.



5.    Direct questions and explanations to the parent even when older relatives are present.


STRESS RESPONSES AND COPING BEHAVIORS



Critical illness and hospitalization in the PICU are stressful experiences for all children. This stress arises not only from the underlying medical condition, but also from the PICU environment and experience itself.


A.    Physiologic Response to Stress


When a human body is faced with a stressful stimulus, the autonomic nervous system is activated, releasing hormones that control physiologic defense mechanisms. The following are signs of this nervous system activation:



1.    Tachycardia, tachypnea, and increased blood pressure



2.    Peripheral vasoconstriction with cool extremities



3.    Inhibition of the digestive system



4.    Inhibition of the immune system



5.    Hyperglycemia in older infants or children, hypoglycemia in young infants



6.    Dilated pupils



7.    Increased level of alertness


7B.    Response to Psychological Stress and Hospitalization


An important part of the human stress response is what the child thinks or feels about what is happening. As children mature, their perception of stress becomes more important to their overall stress response.



1.    Infants. Infants respond to stress with crying and increased motor activity. The infant may be experiencing pain or fear or may feel the need to be comforted. Infants may suck on fingers, pacifiers, blankets, or endotracheal tubes to calm themselves and cope with stress. Older infants may avert their gaze or attempt to turn away from an unpleasant experience. In an attempt to calm themselves, older infants may rock their bodies or use their arms or legs to make rhythmic movements.



      CM is an 11-month-old female who was riding in a car with her 12-year-old brother and her mother. Another car ran a stop sign and collided with the car in which they were riding. CM and her brother are now hospitalized in the PICU with stable injuries while their mother is being evaluated at another hospital. CM’s father is spending his time going back and forth between both his children’s hospital rooms. As CM’s PICU nurse, you notice that every time her father leaves, she screams loudly and cries “Daddy, Daddy” over and over. She reaches her arms toward his direction and searches for him constantly with her eyes. Your attempts to comfort the infant are unsuccessful until she is reunited with her father.



2.    Toddlers. Toddlers may react to stress with increased physical activity, loud crying, or screaming that may continue to the point of exhaustion. The mobile toddler may try to resist a frightening situation physically. This age group is particularly susceptible to distress when separated from parents. Toddlers tend to experience regression when hospitalized. For example, previously toilet-trained toddlers may lose bladder control or revert to thumb sucking. Toddlers are frequently attached to security items and often hold them close to the face.



      Twenty-two-month-old TS is admitted to the PICU with pneumonia. He is receiving oxygen by face mask, has a pulse-oximeter probe taped to his right index finger, electrocardiographic electrodes on his chest, and an IV catheter in his left hand while his hand is secured to an arm board. TS is extremely restless in his crib and keeps getting tangled in the wires and tubing. In addition, he is left-handed and unable to feed himself because his hand is secured to the arm board. As his mother tries to comfort TS, he hits at her with the arm board and cries loudly. The PICU nurse recognizes that this toddler is showing frustration as he tries to maintain his independence despite the medical interventions.



3.    Preschoolers. Hospitalization of preschoolers interrupts and challenges children at a time when they are learning to control their own bodies and environment. To gain control in at least some area, preschoolers may refuse food and not cooperate with caregivers. Preschoolers continue to hold on to security items. Regression to the toddler stage is common. Preschoolers may project feelings of sadness, anger, or guilt onto others or onto toys and frequently express their feelings about illness through dramatic play. Preschoolers may withdraw from interaction with others if they are angry, sad, or in pain.



      Four-year-old MB needs to have a percutaneously inserted central catheter (PICC) placed for ongoing antibiotic delivery. Recognizing that a child this age has a strong imagination and communicates well through play, the IV therapy nurse brings a doll for MB to play with. This doll has a PICC taped to her arm, and the nurse guides MB as she plays with the doll so that she can gain some understanding about the PICC and what it will be like to have the PICC in her own arm.



4.    School-Age Children. A child of this age will ask questions and try to understand the experience. Fear of a loss of control may lead school-age children to deny fears and act “grown up” even when frightened. School-age children may regress to earlier stages of development and fear bodily mutilation and intrusion. If feeling out of control, school-age children may withdraw from caregivers, refuse to communicate, or use television or sleep as a means of escape. He or she finds comfort in familiar routines, the presence of parents, and contact with siblings.



      BG, who is 8 years old, is recovering in the PICU after having brain surgery to remove a tumor. He is awake and alert. His mother has stated that he likes to put together puzzles. BG and his mother work on an intricate puzzle all afternoon, and when the puzzle has been completed, he shows everyone who comes into the room his “awesome puzzle.” The nurse smiles and tells BG what a great job he has done. In doing so, the nurse is recognizing that a child of this age is developing a sense of achievement and competence.



5.    Adolescents. Teens may deny obvious pain and discomfort, especially if peers are present. If feeling out of control, teens may withdraw and refuse to 8communicate or cooperate. Teens may regress to an earlier stage and become demanding and clinging with caregivers or parents. The hospitalized teen may experience labile and conflicting emotions, especially about the hospitalization itself and any disruption to body or body image.



      Sixteen-year-old RM was recently transferred to the PICU because of hemodynamic instability following the administration of several chemotherapeutic agents needed to treat her newly diagnosed leukemia. When she is more stable, RM spends time on the telephone with one of her friends. The nurse overhears her crying and talking about how “terrible I’m going to look when I lose my hair! No boys will ever want to talk to me!” The nurse recognizes that adolescents are often preoccupied with their physical appearance and are developing a sense of identity.


ISSUES RELATED TO HOSPITALIZATION



A.    Fear and Anxiety


Most children experience some fear and anxiety when hospitalized. Fears may be reality based, related to previous procedures or hospitalizations, or the result of magical thinking. Information given to a child by friends or relatives may be incorrect, and the child may inadvertently hear frightening comments made by others. Children in the hospital may witness fear in others and may see or hear things from other bed spaces that cause fear and anxiety.



1.    Age-Specific Fears Related to Developmental Level



a.    Infants. Separation anxiety and fear of strangers begin at 6 to 7 months of age. Crying and clinging to parents are normal behaviors and generally indicate a healthy parent–child relationship. Older infants frequently resist being separated from parents. When parents leave, infants may exhibit loud and active grief that may continue to the point of exhaustion. Over time, they may become passive and withdrawn if cries do not cause the immediate return of parents or if the separation is prolonged. Infants may accept food and comfort from the nursing staff while avoiding eye contact or other interactions.



b.    Toddlers may fear separation from parents, large animals, strangers, “the doctor,” changes in their environment, or “shots.” Temper tantrums, clinging to parents, attachment to security objects, and regression may be used as means of coping with the fears and perceived threats to security.



c.    Preschoolers may fear bodily injury or mutilation, darkness, separation from parents, loss of control, the unknown, death, or “shots.” They may regress and act like a toddler or become quiet and withdrawn if feeling out of control. Preschoolers may be able to express anxiety through play and drawing.



d.    School-age children may fear bodily injury, loss of control, failure in school, supernatural beings, rejection by others, or death. They may also fear intrusive procedures and being separated from family and friends. Incomplete information and misconceptions about illness, injury, and body function may exacerbate their fears. For example, they may believe that illness is a punishment for bad behavior. Some school-age children may be reluctant to ask questions and feel that they must act “grown up.” Additional explanations may be required by this age group, even if an understanding of information is exhibited.



e.    Adolescents’ fear may revolve around social isolation, loss of control, rejection by peers, the appearance of being different, or helplessness. Teens may use denial or regression despite a fear of appearing younger than they are. They may dramatize events or intellectualize illness or injury.


B.    Pain


Children in pain frequently receive too little medication or they may receive no analgesia at all. Despite an increase in the emphasis on pain management in children over the past several years, some misconceptions about children and pain persist (Table 1.1). AACN’s Essentials of Pediatric Critical Care Orientation (EPCCO) provides a broad overview of this topic, and can be used to orient nurses caring for critically ill children, and as a review to reinforce concepts.


TABLE 1.1    Misconceptions About Pain in Children




























Misconceptions


Truth About Pain


Children do not experience pain the same as adults.


Pain is “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage” (International Association for the Study of Pain, 2015, p. 1).


A child who is not crying is not in pain.


9Children express pain in varying ways at different ages.


A child who is asleep is not experiencing any pain.


Some children sleep to try to escape pain, just as adults attempt to do.


Infant nerve pathways are not developed enough to have pain.


Infants, even preterm babies, may experience harmful physiologic and long-term behavioral development effects from stress responses related to pain.


Children will always tell you if they are in pain.


Children may interpret pain as punishment for misbehavior or believe they are supposed to have pain if nothing is done to relieve it.


Children will become addicted if given narcotics.


Physical tolerance can occur, necessitating increasing doses of medication to achieve the same effect, but psychological dependency is unusual. These drugs can be weaned just as with adults.


Children always tell the truth about pain.


Children may deny pain to avoid injections or out of concern for worrying their parents. Teens may deny pain in the presence of peers.


C.    Separation From Family and Friends


Support from family and friends is important to children, and the need for support and closeness increases during times of illness. If children are separated from loved ones, long-term effects, such as impaired trust, diminished intellectual and motor functioning, and disturbed behavior, are possible. Preventing separation of the child from his or her family is the standard of care in pediatric acute and critical care units. Family-centered care practices ensure the closeness of loved ones as familiar trusted sources of security.


D.    Limited Understanding


Misconceptions about illness, treatment, and caregiver motives may result from a child’s limited understanding. Magical thinking may lead children to conclude that an illness is punishment for misbehavior. Words such as “cut” or “take” can be misconstrued by children and increase levels of fear. The vivid imagination of childhood supplies answers to any unanswered questions or unexplained situations.


E.    Loss of Control


Hospitalized children are rarely given choices related to their treatment regimen, which results in little sense of control. Physical restraint can increase the anxiety related to hospitalization and, when at all possible, should be reserved as a measure of last resort. Frequently restraints can be avoided with proper preparation of the child, and therapeutic holding may be used for temporary immobilization. Therapeutic holding with the child on the caregiver’s lap or in a hug position allows close physical contact with a caregiver or family member during procedures and helps to decrease patient anxiety. Allowing choices, when choices are truly present, can assist the child in dealing with feelings that result from the perceived loss of control.


ISSUES RELATED TO CRITICAL CARE UNITS



FB was 5 years old and had been admitted to the PICU after she fell from a second-story window while jumping on the bed. She had experienced a traumatic brain injury from the fall and was intubated. She lay unresponsive, sedated, and in a darkened room to decrease stimuli as the rhythmic swoosh of the ventilator breaths continued. On occasion, an alarm or a conversation would break the silence. Another healthcare provider entered the room to examine her and without a word started turning her side to side as FB winced in pain. The nurse gasped, went to the bedside, and stopped any further “assessment.” As the nurse whispered a soft-spoken apology to FB, a tear ran down her face.


A.    Sensory Overload


Sensory overload can occur for the child in the PICU because of the around-the-clock activity.



1.    Noise levels can be high from communication devices, bedrail openings and closings, in-room equipment, alarms, and voices of families and caregivers (Tripathi et al., 2014; Watson et al., 2015). Recommendations have been made by the U.S. Environmental Protection Agency stating that hospital noise levels should be no greater than 45 dB during the day and 35 dB at night (U.S. Environmental Protection Agency, 1974), which is needed for rest, although noise levels in PICUs are known to exceed recommended levels (Watson et al., 2015). Many times, the sources of noise, such as monitors and 10infusion pumps, are located close to the child’s head. Hearing loss can result from persistent humming of equipment, especially when these noises are combined with the administration of ototoxic antibiotics (Hockenberry & Wilson, 2013). Patient annoyance, increased length of stay, delirium, and delayed wound healing also have been correlated with excess noise (Hsu, Ryherd, Waye, & Ackerman, 2012). Noise can also have an impact on nurses who care for our youngest patients. Elevated heart rates, which may negatively impact health (Watson et al., 2015), have been recorded in nurses in PICUs.



2.    Constant light leads to confusion of day and night. Differentiation between day and night is difficult if no windows are available. Lights are frequently bright and are located directly over the child’s head.



3.    Unfamiliar tactile and olfactory stimulation over which the child has little or no control can be disturbing. Children are unfamiliar with hospital food. Medicinal smells may be powerful and unpleasant.


B.    Sensory Deprivation


Although there is an excess of stimulation in most PICUs, there is a lack of the normal types of stimulation beneficial for children. Mealtimes and clothing will most likely change. Important bedtime rituals are changed, especially with unfamiliar blankets, beds, toys, and pajamas. Adults other than parents are directing the child’s activities and schedule. Restricted activity leads to feelings of isolation and boredom and interferes with the child’s ability to cope with the stress of hospitalization. Physical activity is a method frequently used by children to cope with stress. Sensory deprivation may lead to depression and regression and can interfere with normal development. Children who are intubated also have difficulty communicating and may fear that they might never be able to speak again.


C.    Sleep Deprivation


Children in the PICU may experience sleep deprivation because of repeated caregiver interactions and environmental stimuli, and each child has a unique sleep experience (Kudchadkar, Aljohani, & Punjabi, 2014; Table 1.2). Sleep assessment is difficult as each child is an individual and differs by age, illness, medication, and type of interventions (Kudchadkar et al., 2014). Day–night orientation can be lost because children in the PICU sleep less than normal, and often any sleep that is achieved will be interrupted. The physical effects of sleep deprivation may result in immune-system vulnerability, inefficient temperature regulation, and impaired healing of cells and tissues. Anxiety, irritability, confusion, and hallucinations are just a few of the psychological symptoms that may be seen in children experiencing sleep deprivation (Gregory & Sadeh, 2012). Nonpharmacologic interventions that can improve sleep include subdued lighting, unit quiet times, earplugs, and formalized noise-reduction protocols (Kudchadkar et al., 2014).


TABLE 1.2    Causes of Sleep Deprivation in the PICU






Noise levels


Decreased light–dark cycles


Disruption of home sleep rituals


Pain and discomfort


Isolation


Immobilization


Anxiety


Depersonalization


Restraints


Tense atmosphere


Pharmacologic paralysis


REM and NREM suppressant drugs


NREM, nonrapid eye movement (sleep); REM, rapid eye movement (sleep).


Source: Reproduced with permission from Slota, M. C. (1988). Implications of sleep deprivation in the pediatric critical care unit. Focus on Critical Care, 15(3), 35–43.


D.    Lack of Privacy


Some PICUs are large, open units where patients and families experience “living in public.” Open areas allow “strangers” (other visitors and hospital employees) to see the children and their parents. Children may also be aware of procedures and crises that occur at beds close to their own, and the need for close observation sometimes leads to physical exposure of the child.


E.    Technology Dependence


The number of technology-dependent patients has increased since the development of mechanical ventilation (Rennick & Childerhose, 2015). Critically ill, unstable children are the highest priority in the PICU. Chronically ill but stable children who are technology dependent may receive less developmental and psychosocial support when the PICU is busy or understaffed. Technology may interfere with parental attachment or lead to the parents’ emotional withdrawal from their child. Technology-dependent children may experience long periods of separation from home, school, and friends. Children are aware that alarms are related to them and exhibit fear when any alarm is triggered. Chronic sleep disruption can affect learning, growth, healing, and developmental progress.


11F.    PICU Design Considerations


Issues associated with hospitalization may be decreased through the intentional design of critical care units. AACN partners with the Society of Critical Care Medicine and the American Institute of Architects Academy of Architecture for Health to recognize such units. These care areas integrate the needed functionality of a high-acuity setting with the humanitarian needs of patients and families.


DEVELOPMENTALLY APPROPRIATE INTERVENTIONS



A.    Pain Management



1.    Assessment of Pain. An accurate assessment of the critically ill or injured child’s pain is vital for appropriate pain intervention. The child who states that he or she is in pain should be believed. Family caregivers can provide input about their perception of the child’s pain and can also provide a history of the child’s experience with pain, what words the child uses to describe pain, and what interventions were previously successful. The pain assessment should be tailored to the child’s developmental level and needs (Table 1.3). Other important considerations include the following:



a.    Some hospitalized children may be too ill to display typical pain behaviors because energy is directed toward maintaining physiological stability.



b.    Pain assessment scales are useful to quantify and supplement the nurse’s observations.



c.    It may be difficult to distinguish between pain and anxiety. Pain should be considered when the patient’s behavior is associated with actual or potential tissue damage or injury. The underlying disease and the presence of lines, tubes, and drains can contribute to the child’s pain.


TABLE 1.3    Guidelines for Age-Appropriate Assessment of Pain




































Age Group


Behavioral Indicators of Pain


Pain Assessment Scales


Neonate


(0–28 days)


Preterm infant may show a less robust response than a term infant Cry (can be high pitched, tense, or irregular)


Facial grimace (eyes tightly closed, brows lowered and drawn together, mouth square shaped)


Increase or decrease in body movements


Change in feeding patterns


Change in vital signs


Change in oxygen saturation


Vagal tone


Palmar sweating


CRIES (Krechel & Bildner, 1995)


Neonatal Facial Coding System (Peters et al., 2003)


NIPS (Lawrence et al., 1993)


N-PASS (Hummel, Puchalski, Creech, & Weiss, 2008)


PIPP-R (Stevens et al., 2014)


Infant


(0–12 months)


Response may be blunted by state of arousal, level of consciousness, and severity of illness


Cry (can be high pitched, tense, or irregular)


Facial grimace (eyes tightly closed, brows lowered and drawn together, mouth square shaped)


Increased or decreased level of activity, restless, irritable, inconsolable


Withdrawal from stimulus (newborns show poorly localized response; older infants localize more and may attempt to pull away)


Changes in vital signs


Lacrimation


COMFORT-B (Boerlage et al., 2015)


FLACC (Merkel, Voepel-Lewis, & Malviya, 2002)


N-PASS (Hummel et al., 2008)


Toddler


(1–3 years)


Cries, screams


May lie still or rigid


Physically attempts to avoid painful stimuli


Facial grimace of pain


Irritable, sad, uncooperative


Touching or guarding site of pain


Verbalized expressions (“ow,” “ouchie,” “it hurts,” “stop”)


May verbalize where something hurts


Unable to describe pain intensity


May regress behaviorally


COMFORT-B (Boerlage et al., 2015)


FLACC (Merkel et al., 2002)


Preschooler


(3–5 years)


Cries, screams


May demonstrate aggressive behavior


Irritable, difficult to comfort


Easily frustrated


Increasing ability to describe verbally the location and intensity of pain


Body Outline Tool (Savedra, Tesler, Holzemer, Wilkie, & Ward, 1989)


Faces Pain Scale-Revised (Hicks, von Baeyer, Spafford, van Korlaar, & Goodenough, 2001)


FLACC (Merkel et al., 2002)


Oucher (Beyer et al., 2005)


12Visual analogue scale


School age


(6–12 years)


May cry less than younger peers


May grunt, moan, or sigh


Verbalizes protest


Describes pain location, intensity, and quality


Restless or overly still and quiet


Irritable


May try to appear brave


May clench teeth or fists; body stiffness


Adolescent Pediatric Pain Tool (Jacob, Mack, Savedra, Van Cleve, & Wilkie, 2014)


Body Outline Tool (Savedra et al., 1989)


Faces Pain Scale-Revised (Hicks et al., 2001; von Baeyer et al., 2009)


FLACC (Merkel et al., 2002)


Numerical Rating Scale (von Baeyer et al., 2009)


Visual analogue scale


Adolescent


(13+ years)


Describes pain location, intensity, quality, and duration


May clench teeth or fists; body stiffness


May grunt, moan, or sigh


Restless or overly still and quiet


Irritable, moody


May be stoic in the presence of peers


Adolescent Pediatric Pain Tool (Jacob et al., 2014)


Body Outline Tool (Savedra et al., 1989)


Faces Pain Scale-Revised (Hicks et al., 2001; von Baeyer et al., 2009)


Numerical Rating Scale (von Baeyer et al., 2009) Oucher (Beyer et al., 2005)


Visual analogue scale


Children with cognitive impairment


Varies depending on child’s developmental level


Ask parents to describe child’s typical behavioral responses to pain


r-FLACC (Dubois, Capdevila, Bringuier, & Pry, 2010)


INRS (Solodiuk et al., 2010)


NCCPC (Breau, McGrath, Camfield, & Finley, 2002)


Paediatric Pain Profile (Hunt et al., 2004)


CRIES, Crying Requires increased oxygen administration, Increased vital signs, Expression, Sleeplessness; FLACC, Faces, Legs, Activity, Cry, and Consolability; r-FLACC, Faces, Legs, Activity, Cry, and Consolability-Revised; INRS, Individualized Numeric Rating Scale; N-PASS, Neonatal Pain Agitation Sedation Scale; NCCPC, Non-Communicating Children’s Pain Checklist; NFCS, Neonatal Facial Coding System; NIPS, Neonatal Infant Pain Scale; PIPP-R, Premature Infant Pain Profile-Revised.



d.    It is challenging to assess pain adequately in the nonverbal patient (e.g., young child, developmentally delayed patient, sedated or pharmacologically paralyzed patient). The nurse must rely on myriad assessment strategies in this situation.



e.    Reassessment of pain should take place at appropriate intervals around nonpharmacologic and pharmacologic interventions to evaluate the adequacy of the interventions. For instance, depending on the route and dosage of a pain medication, reassessment should take place after the onset of action and then at a frequency determined by the duration of action.



132.    Nonpharmacologic Management of Pain



a.    Various types of nonpharmacologic measures are useful in the management of children’s pain. These techniques work best when combined with appropriate analgesia. See Table 1.4 for a developmental perspective of nonpharmacologic pain interventions.



b.    When possible, tell the child how long the pain will last, and be sure to tell the child when the procedure ends.



c.    Encourage the child to express feelings of pain. Assure the child that it is all right to cry when something causes pain.


TABLE 1.4    Age-Appropriate Nonpharmacologic Pain Management Strategies

























Age Group


Strategies


Neonate (0–28 days)


Swaddling


Positioning


Skin-to-skin/kangaroo care


Developmental care


Nonnutritive sucking (e.g., pacifier)


Oral administration of sucrose (infants <30 days of age or <44 weeks gestation)


Music or fetal heart sounds


Decrease noxious environmental stimuli


Infant (0–12 months)


Bundling and rocking


Presence of primary caregiver


Nonnutritive sucking (e.g., pacifier)


Oral administration of sucrose (infants <30 days of age or <44 weeks gestation)


Familiar sounds (voices, music, etc.)


Security object


Distraction with visual stimuli


Cutaneous stimulation


Toddler (1–3 years)


Rocking, holding, touching


Presence of primary caregiver


Security objects


Distraction (e.g., music therapy, books)


Controlled breathing (e.g., blowing bubbles)


Cutaneous stimulation


Preschooler (3–5 years)


Rocking, holding, touching


Presence of primary caregiver


Age-appropriate explanations and reassurance


Security objects


Distraction (e.g., kaleidoscopes, music therapy, books)


Controlled breathing (e.g., blowing bubbles)


Cutaneous stimulation


School age (6–12 years)


Presence of primary caregiver


Focused relaxation techniques


Distraction (e.g., imagery, music therapy, watching television, use of technology-based device or smartphone)


Controlled breathing


Cutaneous stimulation


Adolescent (13+ years)


Presence of primary caregiver or friends, as desired


Focused relaxation techniques


Distraction (e.g., imagery, music therapy, watching television, use of technology-based device or smartphone)


Controlled breathing


Cutaneous stimulation


Note: To be combined with appropriate analgesia, as indicated.



14d.    Educate parents about their role in supporting the child who is in pain. Ask the parents what comfort measures they have found successful at home.



e.    Distractions, such as singing, blowing bubbles, storytelling, reading to a child, music therapy, watching television, or interacting with technology-based devices, may help a child cope with pain.



f.    The use of rhythmic motion is helpful. Infants often like to be patted on the back or bottom. Infants, toddlers, and preschoolers like rocking motions. Holding the child may be comforting at all ages.



g.    Controlled breathing, imagery, and hypnosis can bring about relaxation. These techniques should be practiced before the painful event takes place.



h.    Cutaneous stimulation by means of massage, the application of heat or cold therapy, acupuncture, or acupressure can provide low-level sensory input to reduce the transmission of painful stimuli.



i.    Sucking a pacifier may comfort infants experiencing pain. Dipping the pacifier in a 24% sucrose solution 2 minutes prior to a painful stimulus may augment pain reduction in preterm and term infants (Stevens, Yamada, Lee, & Ohlsson, 2013). Some centers may have inclusion and exclusion criteria to guide the administration of sucrose analgesia. Examples of exclusion criteria might include the risk for necrotizing enterocolitis or unstable glucose levels.



j.    Collaborate with child-life specialists, behavioral medicine specialists, and other members of the pain-management team to establish an individualized and comprehensive approach to pain management.



3.    Pharmacologic Pain Management



a.    Administration. The goal of pain-management therapy is to optimize pain relief while minimizing adverse effects. For intermittent dosing, consider the duration of action and anticipate redosing before pain returns. Continuous infusion provides a constant level of analgesia and may be preferable to bolus administration. Administer a bolus dose when the continuous infusion is started and consider repeating each time the infusion rate is increased. Patient-controlled analgesia (PCA) has been used successfully in children as young as 5 years and gives the patient a sense of control over his or her pain. In children younger than 5 years or those who cannot use the PCA system because of developmental delays or neurologic impairment, nurse- or parent-controlled analgesia may be initiated (Mondardini et al., 2014). Some patients benefit from epidural or intrapleural analgesia. Topical anesthestics can be applied prior to a painful event, such as venipuncture.



b.    Nonopioids are useful for mild to moderate pain and can frequently be given in combination with opioids for control of more severe pain.



i.    Acetaminophen is a mild analgesic frequently used for pain and fever in children. It works well for mild pain or when given in combination with an opioid.



ii.    Ibuprofen has anti-inflammatory and analgesic effects with potential for gastrointestinal side effects, platelet aggregation, and bleeding.



iii.    Ketoralac is an anti-inflammatory agent that can be administered via the parenteral route.



c.    Opioids. A wide choice of drugs is available to provide relief of moderate to severe pain (Table 1.5). Medications can be given by several routes and may be administered intermittently (scheduled or as needed) or by continuous infusion, depending on the child’s need. A common side effect of opioids is constipation, so consider giving the child a stool softener routinely.



d.    Sedative and adjuvant medications can be helpful if the child remains agitated despite receiving appropriate analgesia. An assessment scale should be used to assess the child’s sedation level and response to interventions. Examples include the State Behavioral Scale (SBS; Curley, Harris, Fraser, Johnson, & Arnold, 2006) and the COMFORT Behavioral Scale (Boerlage et al., 2015). Sedatives should not be used in isolation when there is a pain component involved but can work in combination with opioids to control pain more effectively. The benefits (decreased days of ventilation, less sedation, etc.) of a daily interruption of sedation in the critically ill child is still being debated (Vet et al., 2014).



i.    Benzodiazepines (i.e., midazolam, lorazepam, and diazepam) provide muscle relaxation, amnesia, and relief of anxiety. When a patient has received a benzodiazepine for an 15extended period, taper the drug slowly and observe for symptoms of withdrawal such as a state of agitation, confusion, choreoathetoid movements, and ataxia.



ii.    Ketamine provides sedation and analgesia. Ketamine raises blood pressure and should not be used in children at risk for increased intracranial pressure. It is a useful drug for children with asthma because of its bronchodilatory effect. Observe for emergence reactions such as excitement, hallucinations, or delirium. Maintain a dark, calm environment if this reaction occurs.



iii.    Barbiturates have anticonvulsant and sedative properties. They have a longer half-life and are particularly helpful in patients with acute head injury.



iv.    Chloral hydrate can be used to induce sleep and control agitation. Side effects can occur with long-term use because of a buildup of active metabolites.



v.    Dexmedetomidine is an alpha2-adrenergic agonist with sedative and analgesia effects. It is administered via continuous infusion and has minimal effect on respiration. The patient may need a lower opioid dose when receiving dexmedetomidine.



4.    Pharmacologic Paralysis. The intubated patient may receive neuromuscular blocking agents to augment other therapies. These medications do not affect the child’s state of consciousness or perception of pain. Every child receiving a paralytic should also receive appropriate analgesia and sedation.


16image


image


17B.    Iatrogenic Withdrawal Syndrome


Children who receive prolonged administration of opioids and/or benzodiazepines (>5 days) are at risk for iatrogenic withdrawal syndrome, which can occur with the abrupt discontinuation or too-rapid weaning of these medications. Symptoms may include agitation, increased motor tone, dilated pupils, sweating, nasal congestion, fever, mottling, seizures, poor sleep, hallucinations, grimacing, yawning, poor feeding, vomiting, and diarrhea (Mondardini et al., 2014). An assessment tool, such as the Withdrawal Assessment Tool-1 (Franck, Scoppettuolo, Wypij, & Curley, 2012) or the Sophia Observation withdrawal Symptoms-scale (Ista, de Hoog, Tibboel, Duivenvoorden, & van Dijk, 2013), should be used to identify and monitor withdrawal symptoms. Switching to medications with a longer half-life, using the enteral route when possible, and gradually tapering medications are appropriate interventions for iatrogenic withdrawal (Mondardini et al., 2014). The family or the older child may fear medication addiction. Help them understand that tolerance and dependency are physiologic phenomenon and that the child is not psychologically addicted to the medication. This fact is often not well understood by families and may be a source of anxiety.


C.    Communication


The nurse’s words, tone of voice, body language, facial expressions, actions, and emotions all convey messages to patients and families. It is important to communicate in a developmentally appropriate manner. Acute and critical care nurses can use communication in a positive way to help children and families as they struggle to cope with the stress of hospitalization.



1.    Preparation for Procedures. When given the option, most parents will choose to be present with their child during procedures. With proper preparation and guidance, parents can provide support and comfort to their child. If a parent does not feel able to remain with the child, this decision should be respected. A child-life or play specialist is invaluable in preparing and supporting children in a developmentally appropriate manner for surgery or procedures.



a.    Infancy. Even infants will learn quickly which cues predict painful events. Awaken infants before any painful procedure so they are not aroused from sleep by pain. Avoid repetitively playing familiar music during procedures, such as suctioning or needle sticks, so the infant will not associate the music with discomfort or learn to interpret the sounds as a cue to imminent pain.



b.    Toddlers. Use simple words and phrases to explain the procedure immediately before performing the procedure. Allow the child to handle the equipment when possible. Use restraints only when necessary. Use phrases like “all done” when appropriate so the toddler knows when the procedure is over.



c.    Preschoolers. Use pictures, puppets, dolls, or toys during explanations or demonstrations, and allow the preschooler to handle them. If time permits, preschoolers may be prepared hours in advance for minor procedures or a few days ahead of time for more serious events. Help preschoolers identify safe times and places when no procedure, vital sign measurement, or other care is planned. Allow preschoolers to keep a security item during procedures. Avoid using confusing phrases such as “put you to sleep” for anesthesia or “move you to the floor” for transfer. The child may interpret these phrases literally.



d.    School-age children. Use as many choices as possible. Ask the school-age child to explain what was heard to verify understanding of explanations. Allow time for and encourage questions. Depending on the nature of the procedure, school-age children may be prepared weeks before the event. When advanced planning is not possible, allow the school-age child as much time as possible between the explanation and the event. Teach and encourage the use of cognitive behavioral coping techniques, such as imagery and relaxation, before the procedure.



e.    Adolescents. Provide factual explanations of what will happen and encourage questions. Promote a sense of control by allowing the adolescent to make appropriate choices. Allow teens to choose whether they want to have a parent present. Teach coping techniques, such as imagery or relaxation, before the procedure. Prepare adolescents as soon as it is known that the procedure or surgery is needed.



2.    Communicating With Intubated Children. Children who remember being intubated find the experience of not being able to communicate anxiety producing.



      ET is a 10-year-old male admitted to your PICU with severe status asthmaticus. He is intubated and mechanically ventilated. His arms are restrained to prevent him from dislodging his endotracheal tube and other medical devices. He is receiving intermittent medications for pain and sedation and does not remember having the endotracheal tube placed or why he is in your PICU.



18Strategies for communicating with such a child include the following:



a.    Introduce yourself, and orient the child to the place and situation. Speak to the child before and during procedures. Explain what is happening and why the child is in the PICU (e.g., “You were hurt in an accident,” “You became very sick,” or “You are in the hospital, and you are getting better”). As the child gains awareness, you may need to repeat these explanations.



b.    Explain why the child cannot make noise or cry out.



c.    Use frequent, gentle touching when you are with the child.



d.    Encourage parents to stay with the child, and teach them to assist with appropriate care (e.g., diaper changes, bath, oral hygiene, eye care) if they desire to do so.



e.    Allow these children to point to a picture or a word board to express their needs.



f.    Teach the child how to summon help if needed (e.g., using a call light).



g.    Ask questions that require only a “yes” or “no” answer so the child can shake or nod his or her head or give a thumbs up or down if moving the head is ill advised.



h.    Consult a speech or child-life therapist as needed for additional augmentative communication devices.



3.    Communication With Children Who Are Sedated and Pharmacologically Paralyzed. The child receiving sedation and chemical paralysis will retain the ability to hear and may recollect the experience later.



a.    Use the child’s name, and tell the child what you plan to do even if you think the child might not be able to hear you. Explain noises that the child might hear, such as the monitor alarming or the sounds of the ventilator. Describe things the child might feel, such as vital signs, turning, oral hygiene, suctioning, or bathing.



b.    Touch the child gently, and speak to the child before painful interventions.



c.    Explain to the child why he or she cannot move and that the condition is temporary until the child gets better.



d.    Tell the child that he or she will not be left alone. If the family must leave temporarily, inform the child that the family will return. Family members may record a message that can be played in their absence, such as the reading of a favorite story for the child.



e.    Encourage parents to touch, stroke, and talk to the child. Parents may tell the child about things family members are doing, read stories, or sing to the child.



f.    Ask parents what type of music the child prefers, and play this periodically. Before performing any procedures, turn off the music and then explain the procedure. In this way, the child may realize that procedures do not take place while music is playing.



g.    Place a sign in the room that reminds others that the child may hear them, even though he or she is not moving.


D.    Delirium


Delirium is a common yet underrecognized problem for acutely ill hospitalized children. The delirious child experiences an onset of cerebral dysfunction with a change or fluctuation in baseline mental status, which includes inattention and either disorganized thinking or an altered level of consciousness (AACN, 2016a).



1.    The condition may develop within hours or days.



2.    The delirious child can be hyperactive, hypoactive, or in a mixed state. The child’s behavior often fluctuates during the day and may worsen in the evening.



3.    Risk factors for the development of delirium include the child’s severity of illness; certain patient factors, such as infections, metabolic disorders, withdrawal from medications, restraints and sleep disturbance; and factors from the hospital environment, such as light and noise, which contribute to disturbances of circadian rhythms (Silver et al., 2015).



4.    Use a valid tool to screen for pediatric delirium. Options include the Cornell Assessment of Pediatric Delirium (CAPD; Traube et al., 2014), the Pediatric Confusion Assessment Method–Intensive Care Unit (pCAM-ICU; Smith et al., 2011), and Preschool Confusion Assessment Method–Intensive Care Unit (psCAM-ICU; Smith et al., 2016).



5.    The frequency of delirium screening has not been determined and will vary depending on the tool used.



6.    Interventions to prevent delirium and manage the symptoms when it occurs are focused on 19identifying and modifying contributing factors in the child’s condition; modifying the hospital environment to promote a normal sleep–wake cycle; surrounding the child with familiar people, routines, and personal belongings; as well as offering family education and support.


E.    Interventions for Sleep Deprivation, Sensory Deprivation, and Sensory Overload



1.    Minimize Noise Levels. Be aware of the noise level in the care area and attempt to eliminate unnecessary noise. Alarm volumes should be kept just to the level that will alert the nurse to a problem. Anticipate when infusion pumps are likely to complete their cycle and alarm so they can be responded to quickly. Monotonous sounds, such as the beep of the bedside monitor, can be turned off if not needed. Limit loud conversation both in and outside patients’ rooms, and speak in soft, soothing tones. Use headphones or ear plugs to decrease noise exposure for the children even if they are not listening to music. Turn music or headphones off periodically so the child can have quiet periods.



2.    Maintain a Day–Night Cycle. Determine the child’s usual morning and daytime routines, such as awakening time, mealtime, and playtime. Depending on the child’s condition, adhere to these routines when possible. Try to maintain the child’s normal bedtime routine, which may include a bath at night, reading a story, or having a security object in bed. Dim lights as much as possible at night, and use indirect lighting around the child. Organize nursing care and that of other caregivers so the child can be undisturbed for at least 90 minutes of sleep. When awakening a child, always offer an explanation before performing any procedures. It can be beneficial to establish a schedule that enhances circadian rhythms when possible. For this schedule to be successful, everyone, including parents, needs to follow it as much as possible. Ask parents about their preferences regarding usual home routines. Incorporate this knowledge into the schedule. Initially, the child may be tired and irritable during awake periods and want to sleep. After a few days, however, the child’s body will reestablish a circadian rhythm and the irritability will diminish. A sample schedule to be used as the child progresses through recovery is outlined in Table 1.6.


F.    Facilitation of Play


Having an opportunity to play while in the hospital normalizes and humanizes the environment while allowing the child to release tension and express feelings. Play can also provide diversion while giving children the opportunity to exercise control over their hospital experience. The child who is acutely or critically ill presents a different challenge to caregivers interested in providing play opportunities for their patients.


TABLE 1.6    Sample Schedule to Enhance Circadian Rhythms During Hospitalization



















Time


Activities


8:00 a.m.–1:00 p.m.


Awake


Lights on


Window blinds open


Child out of bed, if possible


TV and electronic devices (as appropriate) on


Playtime


1:00–3:00 p.m.


Nap


Lights off


TV off


Sleep or quiet time


3:00–9:00 p.m.


Awake


Lights on


Window blinds open


Child out of bed, if possible


TV on


Playtime


9:00 p.m.–8:00 a.m.


Asleep


Lights off


TV and electronic devices off


Allow 90 minutes of uninterrupted sleep when possible by grouping interventions or by delaying interventions that can wait until after the sleep period.


Note: Schedule adapted as possible during hospitalization and recovery.



1.    Child-life or play specialists can assist in finding appropriate play activities for children at different levels of development.



2.    If so desired, parents can bring special toys from home for the child. Children appreciate being surrounded by familiar objects.



3.    Caregivers or parents may play for the child who cannot play at all. In some cases, the child can verbally direct the play. Make passive forms of play, such as being read a book, available for these children.



4.    Medical play with equipment and supplies can correct misconceptions about the equipment and lessen the anxiety of a procedure.



205.    Infants enjoy mobiles, pictures of faces, and soothing music or parents’ voices. Older infants enjoy toys they can grasp and manipulate. When their use is possible, equipment, such as bouncy seats and swings, may provide support and enable play.



6.    Toddlers enjoy books, security objects, and music, stories, or recorded family voices. Immobility is difficult for the toddler, who may benefit from watching the caregiver play with puppets, cars, or other active toys.



7.    Preschoolers like to talk and have questions answered. They enjoy water play and having stories read to them. They usually enjoy favorite television shows and will often take part in medical play if given the tools.



8.    School-age children often enjoy medical play, coloring, books, and crafts. Most enjoy children’s movies or television shows. Ask the parents what type of shows the child is allowed to watch at home to avoid conflict related to television. A child of this age may also enjoy playing video or computer games or using other technology-based devices.



9.    Adolescents enjoy books, magazines, and television. Peer visits and the use of a smartphone, if available, can help the teenaged patient feel connected to peers and social media. Video or computer games and other technology-based devices are also an enjoyable distraction.


G.    Provision of Psychosocial and Emotional Support for the Child


SM and EM were 3-year-old and 7-year-old siblings who were unrestrained during a motor-vehicle crash. Both their parents suffered extensive injuries and were being treated in the adult intensive care unit. The sisters had serious injuries but were being admitted to the PICU in stable condition. Both were awake and experiencing fear and pain.


SM cried when the nurse placed her in the bed and attached electrodes and monitoring equipment to her body. She continually tried to remove her IV catheter. Her nurse spoke in soothing tones as pain medication was administered, and she was given a toy to distract her attention away from the IV. Soon SM’s grandparents arrived, and she was observed to visibly relax when she made reassuring eye contact with a familiar face.


In the next room, EM was very quiet. Because of her injuries, her eyelids were swollen shut. She would not speak but would nod “yes” or “no” when asked a question. EM was oriented to the room around her and was told her why she was in the hospital, reminding her that nothing was her fault. She nodded “yes” when asked if she wanted to listen to cartoons on the television. Her nurse arranged for a volunteer to sit with EM when her grandparents could not be with her.



1.    Recognize that hospitalized children may experience a range of emotions. Sadness, anxiety, fear, and anger may arise. These emotions may be a response to being in the hospital, having painful procedures done, having to take medicine, or any number of things that happen in the hospital. Ask about their feelings, and assure them it is all right to feel that way. Some children may be unwilling or unable to express their feelings but sometimes display them by facial expression, crying, withdrawal, or being uncooperative.



2.    Arrange for care by consistent staff members to limit the number of caregivers each child and family encounter. Having a familiar nurse helps to allay parental anxiety and may make it easier for parents to leave the child’s bedside for a time. The nurse who takes time to know the child will become familiar with the child’s responses and psychosocial needs. Most children communicate more readily with familiar caregivers. Caregivers who are familiar with a child more easily establish predictable routines.



3.    Some children do not respond verbally but are willing to nod or shake their heads in response to a “yes” or “no” question or point to a picture on a communication board.



4.    Assure children that they did not get sick because of something they thought or did. This assumes that the hospitalization is not related to the child’s actions or inactions, such as driving without a seatbelt or taking an overdose of medication.



5.    Limit the use of restraints and remove them whenever someone is able to stay with a child or as soon as the child’s condition allows for restraint removal.



6.    With planned admissions, offer hospital and PICU “tours” for both the child and parents. Identify equipment that will be used with the child. Explain the purposes of the alarms. Assure the parents and the child that the nurses know which alarms require an immediate response and which do not. Introduce the child and parents to at least one nurse or staff member whom they will see when the child is admitted.



217.    If the child chooses, allow him or her to wear personal clothing as soon as possible. Being able to wear clothing from home, including underwear, socks, and shoes, is comforting for most children.



8.    Respect the child’s “space.” Speak when approaching the child. Tell the child what you plan to do before touching the bed or the child.



9.    Explain equipment, medications, and procedures in terms of what the child will experience. Tell children what they can expect to feel, see, hear, smell, and taste. Allow the child to hold the electronic thermometer, remove the blood pressure cuff, and remove old tape. Give as much control to the child as is safely possible.



10.  Recognize regression as a normal defense mechanism in the hospitalized child, and help others, particularly parents, understand the process.



11.  Set reasonable limits that a child can understand. For example, explain that it is all right to feel angry and cry, but it is not all right to bite or kick people. Do not threaten or shame a child. Be positive when speaking; for instance, say that you are going to help the child hold still rather than that the child will be held down. If parents use threats (e.g., “If you don’t hold still, that nurse is going to give you a shot”), explain in a tactful manner, but within the child’s hearing, the importance of telling a child the truth and avoiding threats so that the child will trust the caregivers.



12.  Offer whatever comfort the child is willing to accept. Some children may accept stroking and hugging only in the absence of their parents. Interact with children at their eye level, but do not force eye contact with a child who is avoiding it. Interact with the child in a developmentally supportive manner, which can include being physically close, speaking in a soft voice, and using an empathetic touch.



13.  Suggest that the parents bring in family pictures, and place them where the child can see them.


PSYCHOSOCIAL NEEDS OF FAMILIES



A.    Family Assessment



1.    Sources of Stress Related to the PICU. The sight and sound of equipment attached to sick children cause anxiety and fear. Parents often cannot distinguish between alarms that signal life-threatening conditions and those that might indicate something as simple as a completed medication or a false alarm (Board & Ryan-Wenger, 2003). The changes in the appearance of a child and procedures are stressful to parents, especially during the first few days of hospitalization (Jee et al., 2012). Later in hospitalization, stress related to the communication and behavior of staff increase parental stress (Curley & Meyer, 2001). Parents fear that their child is in pain and may fear that the child will die. The presence of other sick, injured, or crying children and their apprehensive parents causes additional stress. Alteration in the parental role occurs as they watch strangers care for their child. This can lead to feelings of loss of control because they do not know how to care for the child themselves. Feelings of inadequacy may result when parents perceive professionals as better able to care for their child than they can. Parents may question their self-image as protector and nurturer of their child as they adjust to a new role as parent to an ill child. Restrictions on visitation and separation from the child can cause additional stress (Jee et al., 2012).



2.    Needs of Parents of Children in the PICU (Curley & Meyer, 2001; Jee et al., 2012)



a.    Receiving as much information as possible



b.    Assurance that their child is receiving best possible care



c.    Feeling that there is hope



d.    Vigilance



e.    Being near their child as much as possible



f.    Assistance with physical care



g.    Being recognized as important to the child’s recovery



h.    Talking with other parents



i.    Prayer



j.    Resources (e.g., transportation, meals)



3.    Responses to Stress and Coping Behaviors. Stress reactions for families increase when a child’s illness is severe, unexpected, or has an uncertain outcome.



a.    Reactions



i.    A shock reaction may occur when parents first see their child in the PICU.



ii.    Parents might be unable to remember information and might repeat the same question several times.



iii.    The initial response of parents may be to focus on the equipment and monitors and to be afraid to approach the bed or their child. Parents might want caregiver’s “permission” and encouragement to approach the bed and touch their child.



22iv.    Some parents blame themselves or other family members for the child’s illness and may show hostility toward caregivers.



v.    Parents may assist in their child’s care with repetitive tasks such as suctioning their child’s mouth or draining urine from the tubing into the bag.



vi.    Parents may focus on a detail and repeatedly complain if they feel it is not addressed adequately.



vii.    There may be a delay in approaching the patient’s bedside while visually scanning the environment for purposes of orientation to the situation (Soulvie, Desai, White, & Sullivan, 2012).



viii.    Parents may display signs of withdrawal or passive behaviors, or they may intellectualize the illness (Soulvie et al., 2012).



b.    Support systems



i.    Family members are anyone who is considered important in the child’s life (Meert, Clark, & Eggly, 2013).



ii.    Family members close to the child may provide emotional support for parents, or they may be an additional source of stress if they are unable to cope with the child’s illness or injury.



iii.    Parents are often more willing to leave the hospital temporarily if a member of their support system remains with their child or if they have grown comfortable with a staff member caring for their child.



iv.    Parents sometimes ask family members of another child in the PICU to “keep an eye on” their child while they leave the hospital for a rest even if a familiar caregiver is providing care for their child.



v.    Parents may miss and worry about children at home or left in the care of others.



c.    Physical needs



i.    If a child’s admission to the PICU was unexpected, parents may need assistance with finding a place to rest (if rooming-in accommodations are unavailable), bathe, find clothing, and obtain food.



ii.    If the parents live near the PICU, they may want to go home to rest.



iii.    Some parents are not able to cope with leaving the hospital and will need a place to lie down in the PICU or in a place as close as possible to the PICU.



iv.    Assistance from social services should be obtained if parents do not have enough money for food.



v.    Parents of critically ill children may forget or decline to eat. Encouraging them to eat and rest will help them to maintain their strength so that they will be able to support and care for their child.



d.    Cultural implications. The cultural and spiritual identity and perspective of families may influence their understanding, roles, and expectations regarding illness, healthcare interventions, and end-of-life care. Diversity is respected and supported by acute and critical care nurses (Bell, 2015).



i.    Some parents whose first language is not English may be able to speak English but have difficulty understanding what is being said because of the stress of the situation and the unfamiliar medical language. Obtain the assistance of an interpreter when the family is having difficulty understanding the professionals. It might be easier for them to ask questions in their own language.



ii.    Be aware that wrist bracelets, ankle bracelets, or objects pinned to the child’s clothing may have cultural or spiritual significance for the family. Treat these objects with respect. Do not remove such objects without parental permission unless absolutely necessary. Consider adding the patient identification bracelet. If objects are pinned to linens, be sure they do not get lost when linens are changed.



iii.    Avoid categorizing or stereotyping members of a cultural group.



e.    Spiritual considerations



i.    Many parents experience guilt and helplessness when a child is ill or injured because they feel they must protect their children from harm of any kind. The illness of a child sometimes causes parents spiritual distress.



ii.    Some parents express feelings that God caused the child’s illness because of a parent’s personal sin or fault.



iii.    If the parents are religious, offer to contact a minister, priest, rabbi, or other religious leader. Offer the assistance of hospital chaplains if they are available.



iv.    Ensure privacy by closing a door or curtain when parents wish to pray or participate in other religious and spiritual rituals. Some parents believe prayer is more effective 23when several faith-community members are gathered together and lay their hands on the child. Allowances in visiting policies should be made for this type of visit.



v.    Assess dietary or treatment restrictions related to religion or culture. These may include rules about some foods or a prohibition against certain treatments, such as a ban on the use of blood products.



f.    Financial concerns. Critical illness usually causes financial stress. Even parents who have insurance may have additional expenses related to hospitalization, which may include the cost of food, travel, babysitting for other children, or loss of pay. Parents may have to return to jobs earlier than desired. It may be necessary for family, friends, neighbors, and faith communities to assist with financial stressors.


B.    Interventions With Families


Multiple studies have been done to identify family needs when a child is critically ill. Families want reassurance, access to the ill child, and information. Nurses caring for the child and family unit ensure that interventions take into account concepts of family-centered care, which allow for family involvement (as much as desired by the family) in the planning and implementation of care. Family-centered care has been shown to be beneficial to the child and family unit—and healthcare providers—through intentional planning, implementation of family-centered care policies, education, and ongoing family-centered competency building by the entire healthcare team (Coats et al., 2018 ; see Chapter 10 for more information on family-centered care).



1.    Supporting Families. Full partnerships should be developed between family members and healthcare providers that share mutual interdependence and equal status. Implementation of the Nursing Mutual Participation Model of Care (Curley & Meyer, 2001) reduces parental stress (Table 1.7). Providing structured education and support to parents has also demonstrated improved outcomes in both mothers and young children.



2.    Communicating With Parents



a.    Make an effort to know the parents’ first names, so they are not always addressed as “Mom” or “Dad.” Ask permission before calling them by their first names.



b.    Make an effort to learn how the parents are coping. Asking whether they were able to sleep or have been able to eat or drink anything demonstrates an interest in their well-being.


TABLE 1.7    Nursing Mutual Participation Model of Care












Admission


Extend care to include parents


Acknowledge their importance


Daily Bedside Contact


Enable strategies that provide the parent with system savvy


         Information: teach and clarify


         Anticipatory guidance–illness trajectory


         Provide instrumental resources


Facilitate transition to “parent-to-a-critically-ill-child”


         Enhance parent–child unique connectedness


         Role-model interactions


         Invite participation in nurturing activity


         Provide options during procedures


Communication pattern


         Establish a caring relationship with the parent


How are you doing today?


         Assess parental perception of the child’s illness


How does he or she look to you today?


         Determine parental goals, objectives, and expectations


What troubles you most?


         Seek informed suggestions and preferences, and invite participation in care


How can I help you today?


Source: Reproduced with permission from Curley, M. A. Q., & Meyer, E. C. (2001). Caring practices: The impact of the critical care experience on the family. In M. A. Q. Curley & P. A. Moloney-Harmon (Eds.), Critical care nursing of infants and children (2nd ed.). Philadelphia, PA: W. B. Saunders.



c.    Engage the parents as partners in care by asking them how they think the child is doing. Parents often detect subtle changes. Such questions also help the parents feel they are important in the child’s care.



d.    Ask about the parents’ understanding of their child’s condition and whether they have any outstanding questions, worries, or suggestions. After you have answered any questions, explore the information you shared with them to ensure that they understood the answers and whether your responses were adequate.



e.    Consider forming a parent support group for the families. Groups can be facilitated by clinical-nurse specialists, nurses from the PICU, or social workers. Personally invite each parent of every child in the PICU to the group and keep all discussions confidential.



f.    Assist the parents with physician contact. Let them know that they may request a joint meeting between the family and staff at any time, or offer to arrange a standing meeting for children anticipated to have a lengthy stay.



243.    Building a Relationship of Trust. Parents need to trust the caregivers to feel comfortable enough to leave the bedside. Ask the parents to let you know where they are when they are not in the PICU and how they can be contacted. Agree about when they want to be called. Some parents prefer to be called if any change at all occurs, whether positive or negative. If you have agreed to call the parents when their child asks for them, do so. This will enhance a trusting relationship between the nurse and the parents as well as between the nurse and the child. Determine whether the parents have access to a cellular phone and consider loaning them a pager if needed so they will know you can easily contact them wherever they are.



4.    Mutual Care Planning With Parents



a.    Help the family understand which things are safe to touch and which must remain the caregivers’ responsibility. Some parents turn off alarms to be helpful. Their point of view may be that they are doing the same thing as the nurse who walks into the room, touches a button, and walks away. Take time to explain the unseen assessment that is performed by the nurse as the alarm is silenced.



b.    Collaborate with the multidisciplinary team (which includes the family) regarding the daily plan for the child. Daily rounds with family members provide a time for information gathering, clarification of understanding, questioning, and participation in decision making. Encourage the family to share their observations about the child, especially any changes they notice. If the plan is to observe the child and not make any changes, let them know that also so that they are not disappointed by a perceived lack of progress. Rounds with family members also improve trust with the healthcare team and increase transparency of intention (Meert et al., 2013).



c.    Assist the parents in gaining as much control as possible by maintaining the parental role. Offer choices as much as possible. For example, when possible, let the parents decide when to give a bath or perform oral hygiene.



d.    Offer to be a gatekeeper for the parents. If parents are being stressed by too many visitors who stay too long, let parents know that the staff is willing to place limits on visiting so they do not need to do so.



5.    Caring for Parents of Chronically Ill Children



a.    Children with a chronic illness may experience multiple PICU admissions. When possible, assign nurses who are familiar to the child and family from previous admissions.



b.    Parents may be accustomed to performing many procedures at home and have developed their own ways of doing them. Ask how they perform care at home, and be open to the possibility that the staff can learn from experienced parents. Their expertise and contributions to care should be recognized. Parents will also have the ability to assess their child and provide input into clinical management.



c.    Nurses caring for chronically ill children in the PICU should maintain the child’s home routine as much as possible and provide developmentally supportive care.



d.    To ensure the continuity of care, the multidisciplinary team should convene a discharge-planning session with the family before the child returns home or to another facility.



6.    Working With Siblings of a Child in the PICU



a.    Siblings of critically ill children have special needs. The PICU nurse can help to ensure that family-centered visiting policies are in place and that the PICU environment is such that children feel welcome.



b.    Certified child-life specialists provide excellent preparation for siblings and help them to know what to expect before they visit in the PICU. Siblings may imagine that a brother or sister is far more seriously ill or injured when they are not allowed to see for themselves. The child-life therapist can assist siblings to communicate feelings they might have difficulty expressing. Formal programs for siblings may also be developed and can decrease behavioral and emotional problems following visitation (Meert et al., 2013).



c.    Siblings may fear that they caused the illness or injury by something they said or did. Siblings may also experience signs of stress such as sleep disturbances or changes in behavior.



d.    Parents may need assistance in making decisions regarding care of the child’s siblings and whether and when siblings should visit.



e.    Best friends and other close family members of the child in the PICU, such as cousins, may have concerns and needs similar to those of the child’s siblings.



7.    Facilitating Transfer From the PICU. Although transfer from the PICU signals the child’s improvement and stability, it can engender anxiety and worry about future care, and may cause as much stress as the initial PICU admission (Berube, Fothergill-Bourbonnais, Thomas, & Moreau, 2014).



25a.    When their child is transferred, parents may experience anxiety related to the following changes:



i.    Being placed on an unfamiliar unit after becoming accustomed to the PICU



ii.    Unfamiliar staff members caring for the child



iii.    Changes in how frequently the child is assessed



iv.    Discontinuation of frequent monitoring



v.    The lack of the continuous presence of a nurse at the bedside



vi.    Concerns that the child is not well enough to be transferred



b.    Family should be prepared for transfer plans before the event and told of any changes to expect. The nurse should assist in understanding that a transfer means the child is now doing better and no longer needs ICU care. If possible, offer a visit to the new unit before the transfer, emphasizing the positive aspects of the transfer, such as a more private and quiet environment.



c.    A tour of the new unit and introductions to the staff can decrease stress. Care conferences with the family and new-unit staff before the transfer and follow-up visits by PICU nurses can facilitate transition. A critical care outreach team that is available following transfer to a new unit can provide families a bridge back to the PICU providers if any concerns arise (Berube et al., 2014).



8.    “Visiting Privileges” in the PICU. To suggest that parents need our permission to be with their child is the antithesis of a system of healthcare that is driven by the needs of the patient. The primary need of the parents is to be with their child.



a.    Parents should have 24-hour access to their child (Meert et al., 2013).



b.    Parents should be given the option of staying with their child during procedures and tests; studies suggest that families would like to be given the option of and may actually benefit from being present during resuscitation events (AACN, 2016b; Guzzetta, 2016).



c.    Extended family and individuals who are significant to the child by providing care and support should be included in educational and informational processes as desired by the child and family (Meert et al., 2013).



d.    Privacy and confidentiality are important in the PICU but are not barriers to family presence.



e.    Meeting the needs of the children



i.    Encourage an open, supportive atmosphere where family members can come and go around the clock to meet their own needs and those of the child.



ii.    Make exceptions to unit policies based on the child and family’s individual needs, especially if a child is dying.


INTERVENTIONS FOR DYING CHILDREN



NK, a previously healthy 9-month-old, had been admitted to the PICU overnight and diagnosed with bacterial meningitis. His condition had quickly deteriorated, and he required intubation and placement on a mechanical ventilator. Medications were being used to improve his blood pressure, and an arterial catheter and a central venous catheter had been placed. NK was not responsive and did not seem to be aware of anything taking place around him.


As the shift began, the nurse quickly surveyed the situation in NK’s room. It would be challenging to keep up with the multiple care priorities this patient needed, including ongoing assessments, administration of blood products, antibiotics, and placement of a device to monitor pressure in the brain. In addition, two devastated parents clung to each other in the corner of the room, unable to fathom what unspeakable things were happening to their precious child. His nurse established communication with NK’s parents by introductions. Using simple words, his nurse explained what the nurses were doing for NK and answered what questions his parents could bring themselves to ask. Although not aware of it at that moment, his nurse was soon to become the catalyst that would help this family start transitioning from being the “parents of a healthy boy” to the “parents grieving for a lost child.”


The extremely high pressure in NK’s brain then confirmed the worst: A child who had been eating Cheerios and playing with his 2-year-old brother just yesterday was now neurologically devastated to the point that he would not survive. The critical care team’s outcome goals for NK changed from curing his illness to orchestrating his peaceful and dignified death experience.


The nurse facilitated communication between the pediatric intensivist and the parents and talked about how the parents would say good-bye to their son. The PICU has a strong bereavement philosophy, and the program has many interventions that we offer families during this 26devastating time. NK’s parents were assisted in deciding what options would be right for themselves and their son. Supported by the research-based policy of family-centered care, loving grandparents, aunts and uncles, a godfather, and the family priest encircled the parents when, for the last time, the child was placed in his mother’s arms. At the parents’ request, the intensivist and the nurse joined this intimate circle. All eyes were overflowing with tears when the child’s godfather said a prayer for the parents and then prayed blessings on the critical care team.


A.    Pain Management in the Terminally Ill



1.    When a child is dying, the focus of care becomes pain relief and comfort of the child and family. Parents want their child to die peacefully and this desire influences how long they are willing to maintain life support (Hoover, Bratton, Roach, & Olson, 2014). Most parents are keenly sensitive to their child’s pain and do not want their child to suffer (de Vos et al., 2015). In addition, there is a moral imperative to relieve the pain and suffering of dying children.



2.    As the child develops a tolerance toward the analgesic used, higher doses of opioids may be required to provide adequate pain relief. High doses of opioids carry the risk of respiratory depression. According to the “principle of double effect,” when the intended goal is to relieve pain, it is ethically correct to give whatever dose of analgesic is necessary to relieve pain, even with the potential for life to be shortened as a secondary effect (Reynolds, Drew, & Dunwoody, 2013). It is not legal, however, to administer more than is necessary to manage pain or to attempt to hasten death.



3.    Nonpharmacologic means of pain relief are useful in the dying child but should never be used to the exclusion of medications.



4.    To provide better control of pain, give analgesics around the clock rather than on an as-needed basis.



5.    Fear of tolerance or addiction should not be a consideration in the dying child.



6.    Neuromuscular blocking agents do not provide sedation or analgesia for the patient, thereby providing no comfort. Administration of these agents during withdrawal of life support provides no benefit to patients and may unethically hasten death (Sprung et al., 2014).


B.    Forgoing Life-Sustaining Medical Treatment



1.    Forgoing life-sustaining medical treatment includes decisions to withhold, withdraw, or limit medical treatment. AACN’s online course, Promoting Excellence in Palliative and End-of-Life Care, is a resource that covers this topic across the life span.



2.    Most ethicists believe there is no difference between withholding medical treatment and withdrawing treatment that has already been in use if the treatment is not beneficial to the patient (American Academy of Pediatrics Committee on Child Abuse and Neglect and Committee on Bioethics, 2000).



3.    When considering the value of medical treatment in children, the benefits of treatment must be continually weighed against the burdens of treatment placed on the child. For instance, mechanical ventilation may be viewed as life prolonging, whereas noninvasive positive-pressure ventilation may relieve dyspnea and improve the child’s time left (American Academy of Pediatrics Section on Hospice and Palliative Medicine and Committee on Hospital Care, 2013).



4.    In most cases, parents are the appropriate decision makers for children. Ideally, parents and caregivers collaborate in making decisions about limiting or withdrawing treatment. The wishes and desires of conscious, coherent children should be given serious consideration (American Academy of Pediatrics Committee on Bioethics, 1994). Parents want to receive understandable explanations of their child’s condition and need to feel that everything possible was done to help their child (Brooten et al., 2013). Parents consider many factors when deciding whether to withdraw life support for their child, including the quality of life, the likelihood that the child might get better (different from survival), and the amount of pain and suffering, in addition to chances for survival. This is more complex and somewhat different from what the ICU staff may consider. For instance, they may view survivability as the most important factor.



5.    A decision to withhold or withdraw any medical treatment applies only to that specific treatment and should not be generalized to other treatments or care.



6.    A do-not-resuscitate (DNR) order means only that no life-saving measures will be instituted in the event of a cardiac or respiratory arrest unless other measures have been discussed as well. It does not mean that the child should receive any less or different care compared with the care given to another child. It does not necessarily mean that the child is expected to die soon. A care-and-comfort-only policy is written in positive terms and describes the care that will be given to the child, such as supportive care and pain management. Limitation of treatment 27may include the decision not to institute any new therapies or to stop specific therapies already in use or both.



7.    Any decision to forgo life-sustaining treatment for a child who has been abused should be made using the same process or deliberation criteria used for other critically ill children. Parents or guardians may have a conflict of interest because the perpetrator of the abuse risks having legal charges changed from assault to manslaughter or homicide (American Academy of Pediatrics Committee on Child Abuse and Neglect and Committee on Bioethics, 2000).



8.    Withdrawal of Treatment. Consult parents when planning the time of withdrawal of treatment. There is no urgent need to withdraw support immediately simply because a decision was made. Allow time for parents to gather whatever family members they wish to be with them. Consult multidisciplinary team members, such as a chaplain, child-life therapist, interpreter, and social worker, for assistance as appropriate to family needs. Families may want the clergy from their community to be contacted in addition to or instead of the hospital chaplain, or they may not desire either. They may also want the family pediatrician to be involved (Wender & Committee on Psychosocial Aspects of Child and Family Health, 2012).



9.    Acknowledge that parents may be in a stronger agreement with healthcare providers concerning treatment discontinuation than with family members and friends. This may occur because the healthcare providers are knowledgeable concerning end-of-life issues and may have been more involved in the decision-making processes (de Vos et al., 2015).



10.  Provide anticipatory guidance to family members related to how treatment will be discontinued and how the child might respond. Allow parents all the time they need to say their good-byes to the child both before and after treatment is withdrawn. Parents may wish to hold the child before and after treatment is withdrawn, especially if death is expected to follow quickly after withdrawal of support. Parents may wish to play specific music for the child, have certain toys or security objects available, or carry out other rituals that have had meaning for them as a family, especially if the child is likely to die when support is withdrawn.



11.  Consider Discontinuation of Monitoring. If the unit has central-monitoring capability, consider turning off the monitor in the child’s room and continuing monitoring at the central station. Avoid having alarms go off in the child’s room if no response to the alarms is planned.



12.  Neuromuscular blocking agents should be stopped and allowed to wear off prior to withdrawal of life support. These agents can hasten death and impede assessment of the child (Delaney & Downar, 2016).



13.  Privacy is essential for a family when treatment is withdrawn from a child. Transfer the patient to a private room with less traffic flow, or provide a curtain if no private room is available. Ask parents who, if anyone, they want to have in attendance when life support is withdrawn. Many parents, but not all, wish to be alone, whereas some fear being alone. Assure parents that if they choose to be alone, assistance will be close by.


C.    Caring for the Potential Organ and Tissue Donor



1.    Organ donation may occur after a child is diagnosed as brain dead or as a donation after circulatory determination of death (DCDD).



2.    Brain death is defined as the irreversible cessation of function of the whole brain, including the brainstem. If organ donation ensues following brain death determination, the child’s body is supported and mechanical ventilation continues until organ recovery can take place in the operating room.



3.    The process for DCDD starts with end-of-life decision making prior to the child’s death. In this situation, the child does not meet criteria for brain death, but cardiac cessation is expected quickly once mechanical ventilation and other therapies are removed (Nakagawa & Bratton, 2016). Once the child experiences asystole and is pronounced dead, organ recovery proceeds.



4.    Critical care staff members are required by law to identify potential organ and tissue donors. Early referral to an organ procurement organization affords the best opportunity for skilled professionals to help both caregivers and parents through the process of organ donation.



5.    Some families see organ donation as a chance to have “something good” come from the death of their child (Hoover et al., 2014).



6.    Uncouple the child’s death from the idea of organ donation. Allow the family time to be with the child. Assess the family to determine whether they are 28acknowledging the child’s death to themselves. Note that acknowledgment is not acceptance. If the family is still asking whether there is any chance that the child will recover, they have not acknowledged that the child is dead. Avoid raising the issue of organ donation at the same time the parents are told of the child’s death. Allow at least a brief period between these events. If possible, allow time between raising the idea of organ donation and asking for a decision.



7.    It may be difficult for parents to believe a child is dead when the child’s chest is still moving and a heart rate is visible on the monitor.



8.    Parents may need to ask the same questions repeatedly before they are able to hear and remember what they have been told.



9.    Assure the parents that organ donation will not disfigure the child’s body, preclude an open casket, or delay funeral arrangements (Hoover et al., 2014).



10.  Offer parents the opportunity to hold the child before the organs are removed.



11.  Some parents may want to leave the hospital before the child’s organs are removed, whereas others may need to see the child again following the recovery procedure (Hoover et al., 2014).



12.  Be careful to treat the child who is going to be an organ donor with the same respect and dignity afforded to any child who is still living.



13.  In cases of child abuse, federal and state regulations may require permission of the parent or guardian for organ donation. If organs are to be donated, the medical examiner or district attorney should be notified so that valuable evidence is not altered or lost during donation (American Academy of Pediatrics Committee on Child Abuse and Neglect and Committee on Bioethics, 2000).


D.    Caring for the Conscious, Dying Child


The conscious, dying child may benefit from the opportunity to communicate about his or her own personal dying process. The use of an age-appropriate, advance-planning guide can provide a framework for guiding this dialogue (Mullen, Reynolds, & Larson, 2015). Occasionally, families insist that children not be told about their impending death. Whether and how impending death is disclosed to a child can be influenced by the family’s religious and cultural heritage, previous experience with death, and other influences. It is important to help the parents realize that the child probably already knows or suspects and may not talk about it simply because he or she senses the parents’ avoidance.



1.    Ask the family about the child’s understanding of death. Explore their thoughts concerning death to help you understand and support them.



2.    Encourage parents to discuss the subject with the child and answer the child’s questions.



3.    Obtain support from clinical nurse specialists, child-life therapists, psychologists, social services, or chaplains as needed for the family and child.



4.    Answer the child’s questions openly and honestly.



5.    Assure the child that he or she will not be left alone.



6.    Allow whatever visitors the child wishes to see.



7.    Provide opportunity for a child or adolescent to obtain spiritual guidance and to continue peer relationships.


E.    Caring for Bereaved Families


Grief is the cognitive, emotional, physical, psychological, and spiritual response to an overwhelming loss. Grief is frequently described in terms of stages, phases, or symptoms. Although these references are helpful in understanding grief, grief is not a linear process. The bereaved person moves in and out of the phases at various times in the grief process. Symptoms of one phase may overlap with another, and time limits should not be imposed on the individual for completion of this painful process. When a child dies, parental grief is the subjective, individualized response to a hideous loss. The impact is long lasting and life altering.



1.    Lindemann (1944) described symptomatology that was pathognomonic for grief:



a.    Somatic distress. Feelings of tightness in throat or chest, sighing, weakness, shortness of breath



b.    Preoccupation with the image of the deceased. Hearing or seeing the person who has died, inability to focus on anything other than loved one who died, emotional distance from others



c.    Feelings of guilt. Feeling responsible for the loved one’s death, searching for things that could have been done differently, thinking in terms of “if only”



29d.    Hostile reactions. Feelings and expressions of anger



e.    Loss of patterns of conduct. Restlessness and an inability to complete things started



2.    Kübler-Ross (1969) described the stages of death and dying. As with grief, a person may move in and out of various stages at different times before reaching acceptance:



a.    Denial. Shock and disbelief



b.    Anger. Angry and hostile reactions expressed



c.    Bargaining. Attempts to delay the death



d.    Depression or despair



e.    Acceptance



3.    Miles and Perry (1985) identified three phases of parental grief: (a) a state of numbness and shock, (b) a period of intense grief, and (c) a period of reorganization. During the early phase of numbness and shock, parents may use a variety of coping behaviors and display a wide range of emotions.



a.    Some parents may seem to be in a trance and display no emotion at all. They may show concern for others and even try to comfort other family members while expressing little emotion themselves.



b.    Parents can display a wide range of emotions. Many parents will cry. Some express grief loudly with keening and wailing, whereas others cry quietly. Some parents exhibit inappropriate silliness or euphoria. It is a mistake to judge a parent as unaffected or uncaring because of emotional reactions at the time of a death.



c.    Although parents are in emotional shock and forget much of what is said to them, paradoxically they often remember verbatim the things that were said to them at the time of their child’s death.



d.    Psychic numbness protects the person from feeling the full impact of their loss. It protects the mind from a grief that is too horrible to be faced at one time.



4.    Interventions With the Family at the Time of Death



a.    Be a calm, nonanxious presence. If you are unable to think of something to say, with family permission, be a silent presence (Mullen et al., 2015). Being with a family may assist the parents in several ways. Feelings of isolation experienced by the parents may be reduced. Being with the family helps them to know that nothing is being hidden from them. One of the reasons for malpractice suits is that families sometimes feel they are not being told the truth or that information is being hidden. A receptive, nonverbal posture lets people know you are willing to listen if they need to talk. Bereaved family members have described caring people as those who were able to show that they cared by just “being there.”



b.    Consider the use of a gentle touch to express caring and concern. Be sensitive to those who are not comfortable with being touched. This can usually be discerned by stiffening in the person who was touched. Those who respond to touch will frequently grasp your hand or lean toward you as you touch them.



c.    Keep the focus on the family. Caregivers who feel compelled to share their own losses may be attempting to meet their own needs rather than those of the family.



d.    Provide opportunity to be with the child. Go into the room with family members. Prepare them for what they will see if they were not there at the time of death. Ask the parents if they prefer some time alone with the child. Remain close by and available to them. Offer parents the chance to hold their child. If death is imminent, be sure they understand their child could die while being held. Offer more than once if they seem to be having difficulty processing information given to them. In some circumstances, the parents may ask the nurse to hold their child as he or she dies. Parents may wish to help care for the child’s body. Offer the chance to bathe and dress the child or brush the child’s hair. Provide a rocking chair if possible for parents to rock their child one last time. Siblings may benefit from being able to say good-bye and need to be reassured that they did not cause the illness and death.



e.    Assist parents in telling siblings of the child’s death. The information given to siblings should be truthful and in terms appropriate to their developmental age. Child-life therapists can be helpful with this process. Surviving siblings have had issues with feeling alone or guilty, or feeling that they did not have enough time to say good-bye to their brother or sister (Youngblut & Brooten, 2013). Many excellent written resources are available for children to assist them in the grieving process.



f.    Encourage families to seek professional psychosocial support as needed. It would be impossible to judge who in the family may need professional help following the death of a child. Parents, understandably, might be sensitive if they are 30deemed to be “coping poorly.” Bereavement support groups may also be helpful to families in the aftermath of childhood death.



g.    Call the child by name. Parents need to know that their child was special to others as well as to them.



h.    Avoid platitudes such as “time heals all wounds,” “you wouldn’t want him or her to live like that,” or “you’re lucky, it could have been worse.” These phrases, although meant to comfort, tend to minimize a person’s loss.



i.    Things you can say that are helpful.



i.    “I’m sorry.”



ii.    “This must be terribly hard for you.”



iii.    “Is there anyone I can call for you?”



iv.    “Would you like me to stay with you for a while?”



j.    Avoid delaying the onset of grief by offering the parents tranquilizers or sedatives on a routine basis. Medications may ease the situation for caregivers but only delay the inevitable for the parents. Parents may feel they are being told that their grief is not acceptable.



k.    Offer a remembrance packet to the family. Keep a camera on the unit and offer to take a picture of the child if the parents wish either before or after the child’s death. This may be especially important when an infant dies if the parents have few (if any) pictures. Handprints or footprints can be made easily on a card for the family. Parents may wish to have a lock of hair from the back of the child’s head. Ask their permission before cutting the hair. Baptismal certificates or candles can be provided. Hand or foot molds can be made and placed in a memory box to provide a special keepsake (Mullen et al., 2015).



l.    Provide factual information, but do not dwell on details that the family has not requested. Be prepared to answer the same questions more than once.



m.    Allow the family to talk about the child. Ask questions about the child and listen to the family’s answers. Do not be afraid of their tears or your own. Crying is a normal expression of grief for both family and caregivers. There is no need to say, “I didn’t mean to remind you”; the parents have not forgotten.



n.    Develop a resource file on the unit that includes information about grief for families and caregivers, materials to develop a remembrance packet, sympathy cards to be mailed to families, and a list of effective local self-help groups.



o.    A follow-up program is helpful to families. An index card file system or electronic database is useful to keep a record of the children who have died. Sympathy cards and letters may be sent to bereaved parents a few weeks following the child’s death and again on the first anniversary of the child’s death, at Christmas, or any time chosen by the unit staff (Mullen et al., 2015). Follow-up telephone calls give parents the chance to ask questions and to relate how they are doing. An offer to return to the hospital to visit with physicians or nurses may be helpful for some parents. If an autopsy was done, allow parents to ask questions and review the autopsy report if they so desire (Eggly et al., 2011).



p.    Consider developing a checklist to guide caregivers at the time of a child’s death. Include those things your unit considers most important for parents.



5.    Staff Support. (Please see Chapter 10 for additional information.)



a.    Offer emotional support and assistance to the multidisciplinary team members caring for a child who dies. Allow the healthcare providers to “get out of the unit” for a break as necessary.



b.    Consider support sessions following a death in the unit. Debriefing sessions may be facilitated by a clinical-nurse specialist, child-life therapist, social worker, psychologist, or chaplain.



i.    Some healthcare providers may attend the funerals or memorial services for children for whom they cared. This ritual may assist the caregivers and offer support to the family as well.



ii.    If a child is expected to die, provide a resource person for the nurse who has never cared for a child at the time of death.


Pediatric critical care nurses play a special role and have myriad opportunities to help children and their families cope with hospitalization, the intensive care unit environment, and the stressors that accompany this disruption to their daily lives. Children should be approached in a manner consistent with their developmental level and interventions tailored to their unique needs. Hospitalized children require assistance to help them cope with fear, anxiety, and pain. Nursing interventions will focus on facilitating communication, sleep, play, and providing for the emotional needs of the child and family. Finally, when children and their families must face the end of life, pediatric nurses will rely on important strategies to support bereavement needs.


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Feb 19, 2020 | Posted by in NURSING | Comments Off on Caring for Critically Ill Children and Their Families
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