Andersons pediatric cardiology 2150

that are out of proportion to the clinical “objective severity” and may affect the patient's psychological state.10,11 Psychosocial outcomes are inherently subjective in nature The perspective of the child, the family, and the implications for society must all be considered individually The Child Developmental Approach to the Psychological Stress of Pediatric Cardiac Disease and Its Treatment The stress associated with the diagnosis and treatment of congenital or acquired pediatric cardiac disease will vary both with the trajectory of the illness and the developmental stage of a child Chronic illnesses are characterized by relatively stable periods that may be interrupted by acute episodes requiring medical attention or intervention It is recognized that children with cardiac disease are at risk for a wide range of cognitive and neurodevelopmental impairments (see Chapter 76) Thus they may not exhibit age-appropriate responses Interventions to reduce stress must be targeted to the level of the specific developmental maturity of the child It is difficult to assess the psychological stress experienced by sick neonates and young infants, but the setting of intensive care required for treatment is clearly an unnatural environment with many noxious stimuli Hospitalization and surgery rob an infant of many of the normal experiences known to foster optimal growth and development, including the physiological protection offered by parents, normal touch and neurologic stimulation, and basic satisfaction of needs (e.g., feeding and nurturance).12 Painful interventions, excessive noise and light, sedation, and presence of multiple caregivers are common in intensive care Of equal concern is evidence that anesthetic agents commonly used to protect infants from pain during surgery, such as ketamine, isoflurane, and nitrous oxide, may also have a negative impact on neonatal cerebral development.13–15 A model for developmental care has been advocated in most neonatal and intensive care settings to reduce the inherent risks of hospitalization This model promotes minimal handling, reduction of noise and light, support of natural positioning, and individualized care planning with a family-centered approach.16–18 In later infancy, babies become increasingly aware of their environment Hospitalization at this stage may impart stress due to separation from caregivers and the interruption of normal comforting behaviors, such as feeding, cuddling, and nonnutritive sucking Sedation and physical restraints are often used to prevent an infant from causing harm to themselves during recovery An infant may progress through stages in response to separation from their normal environment Initially there is protest, manifested by excessive irritability and crying Then there is despair The crying may stop, but the infant appears despondent and withdrawn, and there may be loss of previously acquired developmental skills Ultimately, there is detachment Parental return may be met with apathy, the infant appearing more absorbed with objects and the immediate environment.19 Infants experiencing prolonged hospitalizations are at increased risk for negative responses in the long term European longitudinal research has shown after 20 and even 30 years of follow-up, the number of hospitalizations and the results of the first cardiac surgery were predictive of long-term behavioral/emotional functioning in adults The impact of hospitalization in infancy and early childhood should not be underestimated.20,21 A shift toward rooming in and allowing unlimited parental presence in most settings helps to diminish, but cannot eliminate, this stress Promoting a homelike environment with family photos and familiar objects may reduce the disruptive effects of hospitalization The toddler and preschool-aged child are extremely sensitive to separation from parents and intrusions by strangers Painful procedures are met with vehement protests, and the child may be confused by the inability of the parents to rescue them from what seems a treacherous environment.19 Refusal to eat or take medications, or excessive combativeness, may reflect the attempt of the young child to regain control of his or her environment Illness or hospitalization may be perceived as punishment for something they have done wrong Opportunities for medical play and socialization while hospitalized, guided by child life specialists, may help to decrease fear and anxiety Safe places, such as play rooms, must be established in the hospital where the child does not have to fear procedures Children attending primary school (age 6 to 12 years) have an immature understanding of their body and cardiac disease Hospitalization and surgery at this age may be particularly upsetting, invoking fears of bodily injury and death Children may be frustrated by the inability of their parents to shield them from what they interpret as dangerous or painful invasions of their body Children at these ages should be allowed to participate in decision-making regarding some aspects of their care (e.g., to have a chest tube removed in a procedure room or at their bedside) This provides a sense of mastery and control As to preparation for procedures, virtual reality exposure, apps and e-Health tools may offer possibilities for children to get to know operational procedures, which may ... Developmental Approach to the Psychological Stress of Pediatric Cardiac Disease and Its Treatment The stress associated with the diagnosis and treatment of congenital or acquired pediatric cardiac disease will vary both with the trajectory of the illness and the