Rudolph's Pediatrics, 22nd Ed.

CHAPTER 99. Adaptation to Illness

David J. Schonfeld and Ellen C. Perrin

Children frequently experience minor illnesses; during their first year alone, children experience an average of five to seven respiratory or gastrointestinal illnesses. Many children also have a long-term illness that may be associated with restrictions in daily activities; physical disabilities; and repetitive, often painful, treatments and hospitalizations. Estimates of the prevalence of chronic illness range from 17% to 20% of children, with estimates even higher if less serious conditions are included. Approximately 2% of children from birth to 21 years of age have a chronic condition that is severe enough to significantly alter their daily lives; approximately 200 children per 10,000 require intensive care hospitalization each year.1

Illnesses and their treatment are predictably upsetting experiences for children and their families. They represent potential stressors that can interfere with normal development, but they also provide an opportunity for mastery, which can enhance self-esteem and promote development. It is important to appreciate how children of various ages typically interpret and react to physical illness and its treatment to identify ways of minimizing the negative impact of such experiences and of maximizing their positive potential.2 This section reviews the developmental process by which children come to understand physical illness and its treatment; children’s reactions to acute and chronic illness; children’s normal reactions to the treatment process, including medical procedures and hospitalization; and guidelines for assisting children to understand and cope with illness and treatment.

CHILDREN’S UNDERSTANDING OF ILLNESS AND ITS TREATMENT

Children develop an increasingly sophisticated understanding of physical illness and its treatment as the result of both biological maturation and the accumulation of relevant experiences.3 Developmental theorists (such as Piaget) describe important qualitative differences in the basic ways that children at different developmental stages see, interpret, and come to understand various phenomena, including physical illness and its treatment.4 Effective support and assistance during the illness is enhanced by an appreciation of this developmental process.5

Very young children often rely on magical thinking and phenomenistic explanations and may attribute the cause of illness to immanent justice, the belief that good is naturally rewarded and misdeeds are punished. This leads to a child believing illness is caused from personal guilt or causes guilt in others. Children may persist in using immanent justice explanations if they have had less personal experience with illness and if more adequate explanations have not been provided. Children as young as 4 years old can respond to educational efforts to improve their understanding both of specific diseases and of illness in general.6

As young children develop a more accurate understanding about the causes of illness, the concept of contagion appears in their explanations of illness. Initially, such explanations are often overextended to include even noninfectious conditions. By about 9 or 10 years of age, children believe that germs must be internalized to cause illness, but they usually cannot elaborate on the process or mechanism by which illness results. By 12 or 13 years of age, children begin to appreciate the complicated interactions between host and agent in disease causation and recovery from illness. Frequently, it is not until adolescence that children can associate apparently unrelated symptoms (eg, sore throat and a rash) or different stages of an illness with a single disease process. During adolescence, children develop a better understanding of physiology, enabling them to appreciate the rationale underlying many common treatments, such as the use of insulin in diabetes or bronchodilators for asthma.

Young children may fail to accurately report symptoms of physical illness, because they do not understand the processes of bodily functioning or illness causality. They may not understand the relationship of symptoms to a disease process (eg, that dizziness or headache might be symptoms of hypoglycemia). Magical thinking and egocentrism may lead children to conclude that they can deal with symptoms on their own, without reporting them to adults. In addition, immanent justice beliefs may encourage the withholding of information out of shame or fear of punishment. In frustration, parents, and even health care providers, may unwittingly reinforce maladaptive views of treatment as a form of punishment by “threatening” the child with worsening health or invasive procedures (eg, “If you don’t take your asthma medicine, your wheezing will get worse and you’ll have to go to the hospital and get a shot”). While such strategies might yield short-term compliance with treatment regimens, they fail to help a child reach a better understanding of underlying health concepts or the rationale for treatment. These issues are particularly relevant for children with a chronic medical condition, who are often asked to identify and report subtle symptoms (eg, shortness of breath) that may result in unpleasant or painful treatments.

Less is known about how children come to understand the cause of psychological conditions. Children younger than 10 or 11 years of age appear to attribute the causes of psychological symptoms to genetic and perinatal difficulties, while older children more often impute social and intrafamilial difficulties.7 Children less than 10 years of age who do not have a psychological condition tend to believe that psychological symptoms are intentional and under volitional control, at least in part.8

CHILDREN’S REACTIONS TO ACUTE ILLNESS

Many factors, such as those listed in Table 99-1, may influence children’s reactions to acute illness and its treatment. Influencing factors include those that are intrinsic to the child or related to the nature of the family support and the specific characteristics of the illness and the treatment process. The child’s understanding of the illness and its treatment becomes increasingly more important for children after 4 years of age. Systematically preparing children with specific information and developmentally appropriate explanations facilitates their psychological and physiological adjustment to illness, difficult procedures, and hospitalization. Preparation for a planned hospitalization enhances a child’s ability to cooperate with treatment and assists parents by decreasing their anxiety and improving their satisfaction with the treatment process.9 Some innovative programs have been developed to help parents and families cope more effectively with the stresses encountered when a child is hospitalized.1,10 Educational interventions are also helpful for siblings of hospitalized children.11

Table 99-1. Factors Affecting the Impact of Illness and Its Treatment

Child-Dependent Factors

Child’s age and developmental capabilities

Temperament, personality, coping style, locus of control

Genetic predisposition (eg, pain threshold)

Past experiences with illness and hospitalization

Prior preparation regarding procedures and hospitalization

Characteristics of Family

Perceived meaning of illness for family

Degree of support among family members

Nature of preexisting parent-child relationship

Practical resources to deal with problems (eg, financial resources)

Characteristics of Illness and Its Treatment

Perceived meaning of the illness for child

Stability and predictability of symptoms

Uncertainty/ambiguity of prognosis

Visibility of disability

Limitations on cognitive abilities

Functional impairments

Amount of pain and discomfort

Procedures/surgery required

Length and frequency of hospitalizations

The experience of minor acute illness provides children with some opportunities for constructive learning, which may help them in coping with their own or other family members’ illnesses in the future. They learn, for example, that acute illnesses are generally transient and time-limited, that simple remedies may help to relieve the symptoms, and that their bodies are equipped with remarkable restorative mechanisms. For both parents and children, the symptoms provide a salient “laboratory” from which to observe and learn about the processes of bodily functioning and dysfunction.

Both during and following a serious illness, a broad range of behavioral sequelae can be anticipated.12 Many of these include behavioral regression (eg, thumb-sucking, enuresis, sleep and feeding problems) or emotional and social regression (eg, increased dependency, decreased ability to share). Some regression during illness is appropriate, allowing the child to accept care and nurturance and to adjust to the stressors at hand. However, severe regression (eg, a 5-year-old child biting others, incontinence in a child who has been toilet trained for several years) can be especially uncomfortable to the child and the family, and it may necessitate intervention. Children may manifest a broad range of internalizing behaviors (eg, depression, anxiety, social withdrawal) or externalizing behaviors (eg, aggressive behavior, acting out) during and after an illness. It should be noted as well that serious illness and hospitalization may act as stressors that exacerbate preexisting emotional or family problems, which may then become evident and accessible to intervention.

CHRONIC ILLNESS AND CHILD DEVELOPMENT

Between 17% and 19% of children have a chronic physical health condition.13 Chronic illness and physical disabilities may pose different challenges to children and their families, depending on the child’s developmental stage, as outlined in Table 99-2. Other aspects of adaptation to chronic illness are discussed in Chapters 123 and 124. The presence of a chronic illness during infancy, along with the attendant physical discomfort and disruption in routines, may compromise the consistency and dependability of an infant’s environment and may undermine development of basic trust. An illness may also pose a serious challenge to the parents’ emerging sense of competence and confidence in their new roles as parents. During later developmental stages, the necessity for parental involvement in managing a child’s illness may interfere with toddlers’ or older children’s need for increasing independence and may undermine their sense of self-control and autonomy. In addition, school-age children and adolescents may be concerned that restrictions, medication requirements, and visible disabilities associated with their condition could identify them as different from their peers (and thereby label them as “imperfect”) and interfere with peer acceptance. Limitations imposed by the chronic condition may conflict with the need for increasing independence during adolescence, and it may compromise peer relationships and the emergence of a secure physical and sexual identity. Important differences in characteristics of particular health conditions also affect their impact on children and families.14 Many of the factors affecting the impact of illness and its treatment that appear in Table 99-1 apply to chronic conditions as well.

Table 99-2. Challenges for Children with a Chronic Health Condition at Different Developmental Stages

Infants and Toddlers

Developmental Task

Development of trust and security

Challenges

Chronic discomfort or pain

Hospitalizations and painful procedures

Altered eating/feeding experiences

Restriction of movement

Parental grief

Preschoolers

Developmental Task

Development of autonomy

Challenges

Need for adult supervision

Repeated separations

Medication requirements

Dietary and mobility restrictions

Impaired limit-setting by parents

Limitations on peer interactions

School-Age Children

Developmental Task

Development of sense of mastery

Challenges

Requirements for adult monitoring

Restrictions on independence

Dependence on medical care

Medication and dietary requirements

Activity restrictions

School absence

Differences from peers

Adolescents

Developmental Task

Development of personal identity separate from family

Challenges

Requirements of medical supervision

Enforced dependency

Altered body image and visible deformity

Decreased growth

Medication and dietary requirements

Vocational limitations

Challenges to sexuality

Table 99-3. Techniques to Minimize the Stresses Associated with Illness and Hospitalization

Prior Preparation

General education for children about illness through media, schools, and during well-child pediatric visits

Prehospitalization tours, videos, educational materials (eg, coloring books)

At the Time of Illness

Involve child and family members, including siblings, in discussions regarding the illness and its treatment

Support self-care and optimize child’s sense of control and mastery by involving child in treatment decisions; offer choices when possible

Optimize pain control, including for procedures, and minimize functional limitations of illness

Maintain normal home and family routines

Maintain age-appropriate expectations of behavior, including chores, homework, and family activities

Promote continued peer group involvement

Adapt family and school requirements as necessary

During Hospitalization

Minimize length and number of hospital stays

Encourage and facilitate rooming-in and visiting of family members and friends

Child-life programs (recreation and therapeutic play); inpatient school programs

Provide continuity of care; minimize number of physicians, nurses, and students involved in care

Provide family-centered care

While most children and their families find ways to adapt successfully to the extra demands of a chronic physical condition, children with a chronic illness have about twice the risk of experiencing some difficulty with emotional, social, or school functioning as compared with healthy peers.15,16 Children with chronic conditions may show evidence of low self-esteem, anxiety, depression, and social withdrawal. While the prevalence and types of adjustment problems may depend in part on the unique characteristics of specific conditions, most difficulties that children and their families encounter result from challenges common to a broad range of chronic health conditions.17

CHILDREN’S REACTIONS TO HOSPITALIZATION

Approximately 5% of children in the United States are hospitalized each year. It is often difficult to separate the stress of hospitalization from that of the illness and its treatment. In fact, the impact may be synergistic and not simply additive. Hospitalization is almost universally stressful because of the anxiety of separation, disruptions in routines, unfamiliarity with the people and surroundings, and fear and pain related to the illness and its treatment.18,19Separation from parents and other significant family members is a particularly painful issue for children between 6 months and 4 years of age because of their physical, social, and cognitive immaturity and close, dependent relationship with their parents. It is important to minimize hospitalizations by using home-based treatment or day-surgery units and to limit the use of invasive or painful procedures to situations in which alternatives are unavailable.

Optimal control for any pain associated with the illness or its treatment should be a primary goal of pediatric care. By setting up a scenario in which the child can master an anticipated stressor (eg, allowing the child to administer injections to a doll), therapeutic play can be used to allow the child to turn helpless, passive feelings into a sense of active mastery. Parents, too, may feel out of control and anxious when their child is in the hospital.20 Additional principles to consider in reducing the stress associated with illness and hospitalization are found in Table 99-3.

THE ROLE OF PREVENTIVE HEALTH EDUCATION

Health education should begin when children are well. Children should be taught more than to “just say no” to bad health decisions—they must be helped to understand the rationale behind positive choices. Children need to develop refusal skills with which to avoid risky behaviors, and they need to learn how to make informed and responsible health decisions in a context of gradually increasing personal responsibility. Health care providers should use routine health care visits as opportunities to advance parents’ and children’s understanding of illness and its treatment. Unfortunately, while children bring many relevant questions about their health to these visits, pediatricians typically spend little time in direct discussion with the child; therefore, most of these questions go un-addressed. Brief educational interventions for children, parents, and physicians can enhance physician-child communication during well-child visits and can support the child in assuming a more active role in their healthcare. Health education in other settings (eg, school) is also effective in conveying factual information and in advancing a child’s level of conceptual sophistication about illness processes.21-23