2 Psychosocial Aspects of Pediatric Critical Care
Pearls
• The environment and dynamics of a pediatric critical care unit (PCCU) create many challenges for the child, family, and staff members.
• Focused skills and attention are required to prevent psychosocial considerations from being lost in the demanding requirements of technology, treatment interventions, and physical care.
• A pediatric critical care unit stay can result in short- or long-term psychosocial sequelae, including emotional and behavioral disorders, which may be decreased by efforts to reduce stress and promote coping.
• The knowledgeable and caring nurse is in a key position to encourage and support the child’s and family’s coping strategies and to teach more effective strategies to make the critical care experience a growth-producing experience for the child and family.
• Pediatric critical care nursing is a rewarding career option, offering the opportunity to influence the lives of critically ill or injured children and their families.
Introduction
Increasingly, children are enduring and surviving critical care hospitalization as the result of improved diagnostic, therapeutic, and supportive modalities and care.63,100 The child and the parents have unique emotional needs in addition to their medical needs. A critical care unit stay can produce short- or long-term deleterious effects, including emotional and behavioral disorders.65 Children and their parents may be at risk for anxiety, depression, or post-traumatic stress disorder after a PCCU stay.38,41,57–59,97
An essential part of managing the child in a critical care unit is assessing the developmental milestones that the child has achieved, recognizing responses and reactions to the illness and hospitalization, and intervening when necessary to support and promote coping. Although the experience is undoubtedly challenging, hospitalization in a critical care unit can be managed to promote physical and psychological healing and reduce post-hospitalization sequelae. Using evidence-based assessment criteria before discharge to identify children at the highest risk for sequelae can help to ensure appropriate follow-up after discharge.90 Lack of attention to special abilities, needs, and fears can result in a negative experience for the child and family and contribute to deleterious psychological effects. However, with strong support the experience can be psychologically and emotionally beneficial for a child and family.103 Thoughtful interventions aimed at enhancing a child’s and family’s coping skills can help the child and family grow from this demanding event and acquire skills that can be used again in future stressful situations.57 It is important for nurses to recognize the significance of the potential sequelae and the role that nurses play in preventing undesired outcomes.
In addition to pain and other physical stressors that the child may be experiencing, psychological stress can lead to physiologic complications.84 The release of catecholamines and their metabolites is one of the most reliable indicators of stress, evidenced by an immediate cardiovascular response of increased blood pressure and heart rate. Cardiac glycogen tends to be depleted during stress, and release of vasopressin can result in a decrease in urine output. Stress can stimulate the coagulation cascade and increase fibrinolysis. Because the basal metabolic rate may increase, body temperature regulation is challenged by the increase in heat production and concomitant increase in heat loss. Adrenocorticotropic hormone is released, causing increased secretion of glucocorticoids, which in turn can lead to hyperglycemia, suppressed immune and inflammatory reactions, thymus shrinkage, and atrophy of lymph nodes. Stress ulcers, increased catabolism, and loss of body weight can occur.79 Critical illness or injury poses more than enough physiologic problems for the child without the added physiologic effects that accompany acute stress—effects that could be decreased by efforts to reduce the child’s stress and increase the ability to cope. Although the hospital environment itself can induce further psychological stress, even traumatized children and siblings in a hospital setting can benefit from the coordination of care and treatment and thoughtful planning for discharge.50
The critically ill infant
Much has been discovered regarding the amazing and exciting capabilities of neonates. At one time, infants were regarded as passive recipients of care, deficient in abilities to see, hear, or interact. However, healthy infants are able to establish eye contact, respond to and discriminate among various sounds, and initiate social interactions. Investigators have documented a wide range of individual differences regarding neurobehavioral maturity and control and styles of behavior and communication.3,4,14,15
Developmental Tasks of the Infant
Erikson identified eight crises that must be resolved at major stages of human development.27 He theorized that the developing infant, child, or young adult leaves each crisis with both positive and negative aspects. The developmental crisis of infancy is to acquire a sense of basic trust while overcoming a sense of mistrust. To acquire a sense of trust, the infant must develop a sense of physical safety and confidence that physical needs will be met. The quality of the parent-infant interaction and the parents’ ability to interpret the infant’s cues are important to the development of trust. When an infant is frustrated repeatedly in attempts to make needs known and have them met, distrust and pessimism can develop. Once a sense of trust is achieved, unfamiliar or unknown situations can be tolerated with minimal fear.
Both Erikson27 and Freud31 have identified infancy as the oral phase of development. Sucking is of primary importance to the infant, because it is the infant’s major source of gratification and tension release.
The infant’s affective experience is determined largely by the emotional reactions of significant caregivers. This social referencing can be seen, for example, in a situation in which an infant looks to the mother after a surprise event to determine by her reaction whether to laugh or cry. This example further indicates the important role that parents play in their infant’s life.42 Because the parents typically know the infant very well, they can to teach the nurse about the infant’s unique cues, needs, and responses; their presence during the infant’s hospitalization is essential to help meet the baby’s needs.
Although infants are unable to express their feelings and needs with language, they can indicate their need for more attention or stimulation in other ways.76,93,99 Perhaps more important, they communicate when they are becoming overstimulated and need rest. It is crucial that nurses constantly assess the infant’s tolerance during planning and provision of nursing care. In older children, it may be useful to group procedures and then to allow longer periods of uninterrupted rest, but this approach may not be optimal for infants. Too much stimulation at one time can diminish the infant’s coping resources, resulting in adverse physiologic reactions such as vomiting, respiratory distress, apnea, or bradycardia. Gaze aversion is a behavioral cue of fatigue or overstimulation that nurses and parents sometimes miss.
States of Consciousness in the Infant
The infant’s state of consciousness exerts a powerful influence on the infant’s response at any given time. Two sleep states (deep and light) and four awake states have been identified in full-term infants (drowsy, quiet alert, active alert, and crying).10,14,89
Crying is one of the infant’s major methods of communication.10 Crying is associated with increased body activity, grimaces, wide-open or tightly closed eyes, and irregular breathing. Although the infant’s color can change to bright red, very sick patients or those with cyanotic heart disease may demonstrate peripheral or more generalized cyanosis. Infants may be able to bring themselves to a quieter state by instituting self-consoling behaviors such as sucking on their fingers, fist, or endotracheal tube or by paying attention to voices or faces nearby. However, ill infants often need consolation from their caregivers and are often unable to provide self-consoling maneuvers, or such maneuvers may be ineffective. The nurse should attempt soothing maneuvers such as changing the infant’s diaper, feeding the infant, moving close to the infant, making eye contact, or talking to the infant in a calm, soft voice. The infant may also be comforted if held closely, swaddled, or rocked with a pacifier. Infants frequently are highly upset when uncovered or wrapped loosely, but become calm and drowsy when they are swaddled. A combination of verbal and tactile stimuli, such as patting, stroking, holding, or rocking is generally more effective in alleviating distress in hospitalized infants than verbal stimuli alone. Rocking seems to bring comfort and build trust and may relax the parent or nurse as well as the patient.
Touch is extremely important to infants, who need to be caressed, stroked, cuddled, held, hugged, and loved to feel secure and develop normally, and detrimental long-term effects from lack of tactile stimulation during infancy have been documented.92,99 Therapeutic touch is a potentially useful therapeutic modality to relax the patient and enhance recovery.43,46 However, premature and severely stressed infants can exhibit negative responses to excessive handling and stimulation.99 The nurse must identify a therapeutic balance between too much and too little handling for each infant and modify the nursing approach based on the infant’s cues (e.g., gaze aversion, respiratory effort).
Cognitive Development in the Infant
Cognitive or intellectual development in normal children has been observed and described in detail by the Swiss psychologist Jean Piaget, who identified five major phases in a child’s development of logical thought.69,71,72 The nurse is more likely to communicate effectively with children by understanding these phases and the basis of the child’s perceptions, fears, and misunderstandings.
During this period the infant may adopt a favorite blanket, pillow, or stuffed animal as a transitional object101 that provides comfort and a sense of security during the parents’ absence. Absence of the transitional object, particularly during times of stress, will increase the infant’s anxiety. Thumb sucking, genital play, and transitional objects are all potential mechanisms of self-consolation when parents are absent. The last two stages in the sensorimotor phase are discussed in the section, Emotional and Psychosocial Development of Toddlers, in The Critically Ill Toddler part of this chapter, below.
The Infant in the Critical Care Environment
Young infants admitted to a critical care unit may be most affected by the strange environment and disruption of normal routines. The infant’s usual sleep-wake cycles are interrupted by procedures, lights, alarms, or other noxious stimuli. Providers often attempt to arouse the infant regardless of the infant’s sleep state. Ironically, the critical care unit may also produce sensory deprivation with a lack of meaningful stimulation. Some characteristics of a stress-enhancing intensive-care environment—one that adds to the demands placed on the ill infant or child—and those of a more growth-enhancing unit are shown in Box 2-1.
Box 2-1 Environmental Characteristics of PCCUs
Characteristics of a Stress-Enhancing Critical Care Unit
Children are denied periods of undisturbed sleep.
Human contact usually involves painful stimuli, sometimes inflicted without warning.
Holding, cuddling, and social behaviors are discouraged.
Lighting is constant and uncomfortably bright.
Background noise is loud and continuous.
Use of physical restraints is common.
Examination and treatment times are based on staff convenience or hospital routines or schedules.
There is little consistency among the child’s caretakers.
Conversations, often involving a large number of people, are held at or near the child’s bed.
Families are deprived of continuous access to their child, togetherness, and privacy.
Characteristics of a Growth-Enhancing Critical Care Unit
Consideration, concern, and gentleness are the basic tenets from which all care flows.
Caregivers introduce themselves with name and role and address the child and family members by name.
Care and examinations are organized with consideration of patient needs and priorities.
Positive contacts occur with the child between treatments and procedures.
Psychological and emotional needs are given the same priority as physical concerns.
Adapted from Weibley TT: Inside the incubator. MCN Am J Matern Child Nurs 14:96−100, 1989.
From approximately 6 months of age through the preschool period, separation anxiety is the infant’s major source of fear. Separation from parents is extremely stressful.12,87 Because separation is so traumatic, it is helpful for a parent to stay with the hospitalized infant as much as possible. Most hospitals have facilities for parents to stay with young children. If it is not possible for a parent to remain with the child throughout the hospitalization, it is beneficial to maintain flexible visiting opportunities at all hours for parents.
Robertson77 has identified three distinct phases in the crisis of separation: protest, despair, and denial. Although shorter length of stay and more liberal visiting hours have reduced the separation of children from parents during hospitalization, some aspects of this crisis of separation may still be observed. During the protest phase the child cries loudly and screams for the parents while visually searching for them. The infant will tightly cling to the parent if the parent shows signs of leaving. Attention from others is rejected and may even intensify the protest of a child who is experiencing stranger anxiety. The child may seem inconsolable, sometimes quieting only when exhausted. This anxiety, which can last from hours to days depending on the child’s energy and degree of illness, adds to the child’s stress in the critical care unit. It can be frustrating to care for the infant who is protesting, but the nursing staff should still attempt to provide comfort, with consoling gestures, conversation, and objects (such as a pacifier or transitional object). If the nurse takes the time to interact with the infant while the parent is present, that nurse may seem safe to the infant, and the infant may be more receptive to that nurse’s interactions. It can also be helpful to attempt to distract the infant with a colorful toy or musical mobile.
The last phase of the separation crisis is denial, or detachment. The child seems to have adjusted at last, appearing friendly and interested in the environment and other people. More receptive to strangers, the child accepts caretaking from many people. This phase may be interpreted by inexperienced staff as a positive sign that the child is adjusting and is no longer anxious. This behavior may not be a sign of contentment, however, but of resignation. The child detaches from the parent to escape the pain of separation and denies longing for the parent’s presence.77 The child may react with indifference when the parent returns or may seem to prefer the nurse or another staff member.
Preparation of the Infant for Procedures and Surgery
Older infants react intensely to potentially painful situations (Box 2-2). They are uncooperative and may refuse to lie still, attempting to push the threatening person away or to escape. Distraction is not as effective as it is with younger infants. The best technique to decrease fear and resistance is to familiarize the older infant with some of the equipment beforehand (e.g., let the older infant play with a stethoscope), to perform the procedure as quickly as possible, and to maintain parent-child contact. Advance warning of a painful procedure is essential. Painful procedures should never be initiated while the child is asleep, unless the child is anesthetized.
Box 2-2 Preparation of Infants, Children and Adolescents for Procedures and Surgery
Toddlers
Major fears: Separation and loss of control
Characteristics of toddlers’ thinking:
Preschoolers
Major fears: Bodily injury and mutilation; loss of control; the unknown; the dark; being left alone
Characteristics of preschoolers’ thinking:
School-aged children
Major fears: Loss of control, bodily injury and mutilation, failure to live up to expectations of important others, death
Characteristics of thinking in school age:
Adolescents
Major fears: Loss of control, altered body image, separation from peer group
Characteristics of adolescents’ thinking:
The Infant and Play
Play is critical for development, providing an important opportunity for infants to learn about themselves and the world.47 Six features differentiate play from other behaviors53:
1. Play is intrinsically motivated, needing no external stimulus.
2. Play behaviors are purposeless with no concern for efficiency.
3. Play is focused on discovery of what the child can do with an object as distinguished from exploration, which allows the child to determine what an object is.
4. Play is make-believe or without pretense and is not guided by externally imposed rules.
5. During play, the infant or child is actively engaged.
6. Play is also pleasurable and internally real to the child.
Three types of infant play have been described. The earliest type of play, appearing at a young age, is social-affective play. The infant interacts with people, imitating adult actions, such as coughing or sticking out his tongue. The second type is sense-pleasure play, during which the infant derives pleasure from objects in the environment such as lights and colors, tastes and odors, textures and consistencies. Body motion—such as rocking, swinging, or bouncing— and pleasant sounds also provide pleasurable experiences. Sensorimotor activity is the third category of infant play. Infants initially play with body parts, bringing hands and feet into their mouths; oral testing is an important means of exploration. Motor activity is highly enjoyable for infants, and they take great pleasure in kicking their feet and waving their arms. Between 7 and 10 months of age, infants are able to enjoy throwing things out of the crib onto the floor. This game seems to be an endless source of fun. At approximately 9 months old, infants show a newly developed sense of object permanence. Games such as peek-a-boo and toys that go away and come back, such as a jack-in-the-box, provide enjoyable ways for the infant to work through fears associated with separation anxiety.53
The critically ill toddler
In an ideal world, hospitalization of older infants and toddlers (ages 1 to 3) would be avoided, because this is the age group at greatest risk for emotional sequelae related to the experience of hospitalization.77 The pediatric critical care nurse can be instrumental in making this experience less traumatic and more productive for the toddler and the parents.
Emotional and Psychosocial Development of Toddlers
The major developmental task for toddlers is beginning the development of autonomy and self-control,27 so toddlers typically become more independent as the months pass. They can be a bountiful source of enjoyment and satisfaction as they take delight in exploring and discovering new things. They are often liberal with expressions of affection such as engaging smiles, hugs, and kisses. However, the reputation of this period as the “terrible twos” is well deserved, and caregivers must have a great deal of patience and understanding.
Freud refers to the toddler years as the anal stage, because elimination and retention are important skills developed during this period.31 Toilet training begins during these years. Because bowel and bladder control are newly acquired skills, they may be lost when the toddler is stressed. Toddlers who have been toilet trained find it distressing to be placed in diapers. They also may find it confusing and anxiety-provoking to be told that it is acceptable to wet in their diaper or go to the bathroom in their bed after being told the opposite so frequently during toilet training. Toddlers require sensitivity and reassurance from parents and staff to help them feel less anxious. If possible, the child should be allowed to use a bedside potty chair.
Cognitive Development of the Toddler
The toddler makes massive strides in intellectual development, beginning to think and reason, although in a way that is different from adult cognition. During Piaget’s fifth sensorimotor stage of intellectual development, from approximately 13 to 18 months, the toddler further differentiates the self from other objects and will search for an object where it was last seen.69 Early traces of memory also begin to develop during this period.
The Toddler in the Critical Care Environment
Parental presence and support are more crucial than ever to the toddler during this period. When a parent is not present, a toddler may believe that punishment through abandonment is occurring. The toddler is terrified of complete desertion, and fears that the parent is angry; therefore, cries of “I want my mommy; I be good!” may be heard. The toddler can exhibit the same three stages of protest, despair, and denial that the infant does, but is able to be more verbal and assertive in protest.77 Toddlers may call for their parents and may verbally reject consolation and care from others. Physical aggression, hostility, fighting, kicking, hitting, pinching, and biting may be displayed during this period. If nurses are not familiar with a child’s particular rituals for comfort, provision of different comfort measures can add to the child’s confusion and distress.
Preparation of the Toddler for Procedures and Surgery
Any real or perceived painful experience will be met with extreme emotional distress and physical resistance. Because toddlers have a poorly defined concept of body integrity, any intrusive procedures—even painless ones such as measuring body temperature or examining of the ears—can provoke an intense reaction. Toddlers can understand only very simple explanations. Prolonged or detailed explanations or explanations given too far in advance may create more anxiety (see Box 2-2, earlier in chapter). When it is necessary to perform painful procedures, lengthy discussions or provisions of choices are best avoided. It is best to provide a brief explanation, assure the child that you will be there, perform the procedure as quickly as possible, and then comfort the child. Offer choices when you are able to do so.
The Toddler and Play
Most of the toddler’s time is normally spent in some type of play activity. Play is a major component in learning about the world, communicating feelings, overcoming boredom, developing motor skills and independence, and working through anxieties.23 The toddler’s need for play continues during periods of illness. Through play the toddler can find a constructive, acceptable outlet for fears, frustrations, anxieties, and anger. Familiar toys can be comforting and provide a sense of security. Play can serve as a diversion from pain and fear and can become a replacement for mobility. It also can provide some feeling of autonomy and independence by providing control over something.11
The Toddler and Death
The toddler’s egocentrism, lack of a concept of infinite time, and inability to distinguish between fact and fantasy prevent comprehension of the absence of life and the permanence of death. The toddler is developing cognitive concepts of consistency and permanence, and presence and absence, and does so through games such as hide and seek and peek-a-boo. Although toddlers can repeat what sounds like a definition of death, such as “people who die go to heaven,” they are unable to comprehend what this means. Death may mean separation from the love objects and people the toddler needs and depends on.9 The most frightening aspects of hospitalization for the toddler usually include pain, anxiety, and separation from parents, but they do not include anxiety about death. Rather than fear of death, the dying toddler will respond to comforting support offered by the parents and will also respond with fear or sadness to the anxiety, sadness, depression, or anger expressed by parents.
The critically ill preschool child
Emotional and Psychosocial Development of the Preschooler
The preschooler, at 3 to 5 years old, has come a long way in the development of motor, verbal, and social skills. This is a time of enthusiastic and energetic learning and exploration. The chief developmental task of the preschooler is creating a sense of initiative.27 Tolerance of frustration is still limited, but is better developed. Guilt feelings result when the child is not able to live up to the child’s own or other’s expectations of appropriate behavior. The preschooler’s conscience is fairly primitive, is likely to be overzealous and uncompromising, and can be unnecessarily cruel.27,30 Thoughts about “being bad” or wishing for “bad things” to happen to other people can also lead to feelings of guilt and anxiety. Painful treatments, isolation, separation from parents, loss of autonomy, and immobilization are likely to be interpreted as deserved punishments for real or imagined wrongdoing.
During the preschool years, the child begins the process of sex-role identification. Freud has termed this period the phallic stage.31 Initially, in the oedipal phase, the child is drawn to the parent of the opposite sex. Late in the preschool period, the child begins to strongly identify with and seeks to imitate the parent of the same sex. It is during this time that children discover that boys and men have penises and girls and women do not. For some children, seeing another child naked in the critical care unit (however briefly) may be the child’s first experience with this discovery. During this period, boys have a fear of castration as punishment for real or imagined misdeeds. Urinary catheterization or other procedures near the genital area may cause a great deal of anxiety, provoking frantic resistance. It is important to provide careful explanation of exactly what will and will not happen during such procedures in order to decrease the child’s fear and increase cooperation. In addition, protecting modesty by keeping the genital area covered and asking permission to look, listen, and touch conveys respect for the child.73