Growing Up in the Hospital

We must be prepared to answer questions concerning the general physical and mental health of our patients as well as to correct accidents that occur in the course of [his] development. —Leo Kanner, 1937¹

Major advances in medical technology, such as chemotherapy, bone marrow transplantation, and immunotherapy, have increased survival rates and changed the lives of ill children and their families. One consequence of these advances in medical care has been that many children have experienced multiple, intensive, long-term hospitalizations. Despite pressures from insurers to shorten lengths of stay, children with serious chronic conditions can spend much of their childhood in a hospital. In 2000, approximately 2 million children and adolescents were hospitalized for pediatric illness.² It also has been estimated that “childhood disability” accounts for 5 million hospital days each year.³ These illnesses can range from relatively common pediatric diagnoses such as sickle cell disease, severe asthma, and cystic fibrosis, to rare conditions such as immunodeficiencies, cancer, and unusual genetic syndromes. Prolonged hospitalizations, though necessary for adequate medical care, change the physical and emotional environment, disciplinary context, schooling, family life, and neurobiology of the chronically ill child.⁴ Thoughtful and integrated multidisciplinary care is more important today than ever before.

Physicians and hospital staff should realize that many children with chronic conditions are growing up in the hospital and that these hospital experiences can profoundly affect their cognitive, emotional, social, and sexual developmental trajectories. With this understanding, the hospital environment and clinical approach must be modified to optimize development. An important goal for these children and adolescents is to normalize hospital life as much as possible. Parents rooming in with infants and children, the creation of Child Life programs in hospitals, and universal pain assessment are examples of changes in the hospital environment that take into account developmental considerations. Parents, initially focused on life-threatening physical concerns, often later express deep gratitude for these interventions and are eager for additional support of their child's psychosocial development. Although such initiatives have been valuable contributions to the environment of care, additional practices should be adopted to help these children. The focus of this Commentary is limited to the impact of frequent or prolonged hospitalization on medically ill children since so little is known about children's experiences during transitions between inpatient and outpatient settings.

Healthy child and adolescent development involves sequential stages of progressive growth that culminate in a sense of identity and an understanding of one's surroundings. Infants form attachments to caregivers, who in turn provide emotional support and facilitate the child's exploration of his or her surroundings. This process is essential for the establishment of trust. Over time the child gains autonomy, initiative, and industry, as a result of positive interactions with the environment and caregivers. The central struggle during adolescence is to define an identity.⁵ Progress through these stages is fostered through stable relationships with caregivers, the creation of peer groups, and a sense of self-efficacy in school or other engaging activities. Disruption of these stages typically results in a child becoming stuck at a particular developmental age.

Medical illness and hospitalization are serious threats to this developmental process. Invasive procedures; separation from family, friends, and school; as well as lost opportunities to develop interests and a sense of self-mastery complicate developmental tasks at each stage of emotional growth. Diagnostic tests are often unscheduled, disruptive to sleep, and painful. An infant subjected to unexpected medical procedures may have difficulties forming attachments to caregivers and may become anxious as a result of this environmental instability.⁶ Repeated exposure to pain coupled with the absence of social stimulation in neonates also has been shown to affect later pain sensitivity, brain volume, neuroendocrine functioning, behavior, and cognition.⁷ Environmental restrictions, such as isolation for infection control and limited activities while in the hospital, lead to fewer opportunities to discover personal strengths and weaknesses. Chronically ill children often have difficulty finding something at which to excel and thus have trouble feeling confident and competent. Identity formation is especially challenging in the hospital setting as adolescents may use their illness or disability as their identity instead of developing goals or aspirations beyond the hospital setting.⁸

Familial dynamics and usual disciplinary rules often are suspended or modified in the hospital setting. The parental perception that an ill child is particularly vulnerable, which has been described as the “vulnerable child syndrome,” can contribute to later problems with developing independence, overuse of health care resources, or overprotective parenting.⁹ Such perceptions often are fueled by dire predictions by physicians, which may lead to adjustment and discipline problems when children live long past initial estimations of life expectancy. Families tend to be reluctant to discipline a child believed to be in pain or with a shortened life expectancy. Furthermore, hospital staff may be unclear about their role in disciplining the child. Although understandable, this alteration in limits and consequences for misbehavior can be harmful to these children, leading to further acting out and difficulties in regulating their own emotions and behavior. Even though frequent consultations with psychiatrists, social workers, and psychologists can be helpful to the care team and families, mental health professionals cannot substitute for parents and have limited opportunities to directly monitor behavior. Consequently, when possible, principles of behavior management should be incorporated into the culture of pediatric units.

Routine procedures, such as phlebotomy, immunizations, or intravenous access, can become viewed as innocuous by medical staff as a result of frequent exposure. However, the cumulative effect of these procedures may have a long-term effect on anxiety states in children. A serious psychiatric consequence of medical illness in children is posttraumatic stress disorder (PTSD). Depending on the nature and severity of the hospitalization experience, extent of social support, coping style, and previous life events, a child with a chronic medical illness may be at risk for PTSD.¹⁰ Prevalence estimates of PTSD in pediatric cancer survivors range from 12% to 35%.¹⁰ The trauma of medical procedures presents unique challenges, as primary caregivers and medical staff may become associated with pain and anxiety in the child's mind.¹⁰ Additionally, caregivers and staff may develop symptoms of anguish by witnessing difficult experiences in an ill child, possibly leading to further reluctance to set limits on inappropriate behaviors. Consequences of PTSD include increased distress, decreased adherence to medical regimens, psychiatric sequelae, and an overall decreased quality of life.¹⁰ Measures to prevent the development of PTSD include increased communication with the child, adequate use of pain medications, and provision of other educational materials and interventions.^{10 - 12}

Helping hospitalized children and adolescents requires interventions at multiple levels ( Article ) and ideally involves the child, parents, family, and hospital staff. Whereas the creation of a nurturing and developmentally sensitive environment most likely will fall to hospital staff, enlisting the assistance of family members is essential to create structure and stability for these children. Parents of chronically ill children should be involved early in discussions of daily scheduling and behavioral expectations to help establish realistic rules and increase adherence. Parents of children with life-threatening illnesses often feel guilty and depart from their usual parenting practices. “Anticipatory guidance” by health professionals about parenting struggles in and out of the hospital is best addressed at every developmental stage.¹⁴

In recent years, several approaches have been used to improve the experiences of chronically hospitalized children. Establishing critical pathways for children staying in the hospital for longer than 2 weeks facilitates the introduction of clear rules and expectations for hospital behavior. A schedule of activities for the day may be posted in every child's hospital room. Staff should introduce themselves whenever entering a room and offer to explain procedures, even if the child is well known or previously has had the procedure. Expectations for behavior during the hospitalization should be discussed preemptively with both the child and parents rather than after behavior problems start. Parents can be involved as active participants in enforcing structure, discipline, and consequences for misbehavior. In this respect, awareness of developmental stages aids in the scheduling and management of these children. For example, children and adolescents fare better when hospitalizations and elective procedures take into account possible developmental milestones such as important birthdays, graduations, and proms. The recent publication of the Medical Traumatic Stress Toolkit¹¹ is an example document that helps patients, staff, and parents understand, in a developmentally sensitive fashion, the issues that arise during a child's hospitalization.

A truly multidisciplinary approach to caring for chronically ill children contributes to an optimally therapeutic environment. Consultation and interactions with child psychiatrists, psychologists, social workers, Child Life workers, and other therapists should be considered no less important than hand hygiene. Communication is essential and can be facilitated through the often lost (because of time constraints and lack of reimbursement), but critical, weekly multidisciplinary rounds. The entire care team, including physicians, nurses, occupational and physical therapists, teachers, spiritual ministry, pain and palliative care, as well as mental health professionals, can then meaningfully address pressing medical and developmental concerns among themselves and later with the patients and their families. Preliminary evidence suggests that cognitive behavioral interventions are effective in reducing pain and anxiety in children undergoing medical procedures.¹⁵ Specific procedures such as biofeedback and guided imagery with suggestions are well established in the literature.¹⁶ These interventions, which are incorporated by many children's hospitals, have yet to be utilized by all facilities that provide health care to children. Resources for guidance in the care of children in hospital settings are available.¹⁷

Beyond the ubiquitous distress and pain experienced by hospitalized children, the prevalence of psychiatric symptoms such as depression and anxiety in chronically ill children has been studied.¹⁸ For example, prevalence rates of depression vary in reported populations such as asthma (up to 48%)¹⁹ and pediatric oncology (<10%-18%).²⁰ In addition, because half of lifetime cases of psychiatric disorders begin by the age of 14 years,²¹ recognition of early psychiatric symptoms and the formulation of interventions for the prevention of future psychiatric disorders are needed. Developmental arrests may not be as well understood or recognized when children become adults and transfer into the adult medical system as “difficult patients.”

Continued improvements in the care of chronically ill children will require changes to the hospital environment and the training of health care professionals to be aware of how development is altered in the context of chronic illness. Comprehensive implementation of effective interventions, as described above, is needed in all hospitals that admit children. Further evidence-based trials of current interventions, such as cognitive behavioral therapy; complementary, alternative and psychoeducational treatments; as well as newer developments in telehealth and Internet-based interventions,²² are needed so hospitalized children can receive the best quality of care.

Looking forward, advances in genetics, molecular biology, and neuroscience are likely to yield a better understanding of vulnerability and resilience in the face of medical illness. Subjective symptoms such as distress, pain, anxiety, and depression are highly variable and individually determined. In the future, it may be possible to predict treatment response through baseline measures of cortisol, norepinephrine, or cytokines. Furthermore, specific gene polymorphisms may predict children's neuropsychiatric responses to such treatments as interferon alfa²³ and psychopharmacologic agents.²⁴ The promise of individualized medicine is having the ability to modify the environment and treatments according to each child's specific needs and vulnerabilities. Until that time, research on genetic and environmental contributions to depression, anxiety, and other psychiatric symptoms in hospital settings should be prioritized, as should outcomes research for the psychosocial interventions, including those mentioned here. Ultimately, multisite, evidence-based research will serve to validate the best possible interventions for hospitalized chronically ill children and adolescents.

The task in pediatrics is “to maximize children's functional abilities and sense of well-being, their health-related quality of life, and their development into healthy and productive adults.”²⁵

By collaborating across disciplines, the best possible environment can be created in the hospital for children with serious medical illness, and support can be provided for their parents. With these suggested modifications stated herein, hopefully these children can grow into independent, confident adults.