Adaptation to General Health Problems and Their Treatment

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CHAPTER 9 Adaptation to General Health Problems and Their Treatment

This chapter reviews (1) how children learn to distinguish being sick from being healthy, what causes one to feel sick, and how to get better; (2) how sick children’s understanding of health and illness states is similar to and yet different from that of healthy children; (3) how children adapt to or cope with stress; (4) how chronic illness stresses the child and family unit; (5) children’s competency in medical decision making; (6) the importance of proactively transitioning chronically ill young adults to adult care; and (7) children’s understanding of death. The crucial role of the cognitive developmental sequence in determining what pediatric patients understand and why they respond as they do to the need for adherence to treatment regimens is evident in virtually every aspect of any medical encounter. Time and repetition remain key elements in fostering understanding of illness and promoting healthy behaviors.

CHILDREN’S UNDERSTANDING OF HEALTH AND ILLNESS

In 1986, the First International Conference on Health Promotion defined child health as “the extent to which individual children or groups of children are able or enabled to: a) develop and realize their potential; b) satisfy their needs; and c) develop the capacities that allow them to interact successfully with their biological, physical, and social environments.”¹ In 1997, the World Health Organization defined health as a state of complete physical, social, and mental well-being.²

Children are likely to give a fundamentally different answer to the question “What is health?” by defining what it is not: disease or disability. Much as a young child is more likely to learn the word dead before learning the word alive (because, to the anthropomorphic child, everything is alive), the young child is more likely to learn the word sick or sickness (as different from the way a person feels every day) before learning the words healthy or health.

What is the child’s conceptualization of illness? A number of investigators surveying children with a variety of illness types and in a variety of cultures ³^–⁹ have consistently found that the child’s understanding of illness is a stepwise process that evolves in a systematic and predictable sequence. A useful, although by no means the only, framework for understanding this evolution is Piaget’s theory of cognitive development.^10,¹¹ According to this paradigm, both biological and cognitive maturation and the accumulation of experiences facilitate a progression to sequentially more sophisticated stages of understanding. Salient characteristics of each stage include the progressive ability to engage in logical (operational) thought, to separate internal realities (wishes, desires, thoughts) from the external world, and to distinguish other people’s points of view from one’s own.

Children with almost any type of chronic illness have a more sophisticated understanding of disease, especially their own, than do healthy children, and their knowledge base can expand quickly with increasing experience with the disease.¹²^–¹⁴ Similarly, children in the general population have a better understanding of “everyday”-type illnesses—which they or a family member or friend have experienced—than they do of less common or unusual illnesses.¹⁵ However, even younger children (e.g., those in kindergarten through sixth grade) can benefit from appropriate, developmentally based instruction about relatively complicated conditions, such as acquired immunodeficiency syndrome (AIDS), without engendering fear of contracting or being harmed by the illness.^5,^16,¹⁷ Thus, acquired knowledge plays a role in children’s conceptual development that augments gains in understanding purely from the maturational process or experience.

Understanding of illness in children as young as 4 to 6 years includes such dimensions as identity (what the illness is, including labels and symptoms); consequences (the short- and long-term effects); time frame (how long the illness usually lasts or how long it will take to get better); cause (factors contributing to the onset of the illness); and cure (actions needed to become well again). Young children’s understanding of these dimensions of illness is similar to, although less mature and informed than, that of adults and appears to be an important influence on health-related beliefs and behavior.

Although preschool-aged children have limited understanding of their role in illness causation, most understand that they have a role to play in the remediation of illness, probably because they have already been asked to do so (e.g., take medication, drink lots of fluids, stay in bed). Thus, if clinicians desire to involve children in health decisions, they should provide appropriate, structured choices regarding the various treatment options available to encourage a patient’s willing participation.¹⁵

Symptoms are the outward manifestation of disease and serve as the cues that enable children to identify and recognize illness. Studies of how children understand illness have typically been based on the conceptual complexity, factual content, and accuracy of their responses about causation and transmission.^4,^5,¹⁸ Brewster¹² outlined a three-stage sequence of conceptual development in children’s understanding of illness causation: (1) illness is caused by human action, (2) illness is caused by germs, and (3) illness is caused by physical weakness or susceptibility. Perrin and Gerrity³ reinterpreted these findings as follows: (1) illness is the consequence of transgression against rules, (2) illness is caused by the mere presence of germs in the environment, and (3) illness may have many causes, including the body’s particular response (host factor) to a variety of external agents that either cause or cure disease.

Piagetian Framework of Illness Conceptualization

Piaget ¹⁹ demonstrated that children exhibit a system of logic that is fundamentally different from that of adults, as they try to understand and explain basic concepts such as space, time, number, and causality. As the child’s understanding of the world increases, the system of logic follows a developmental sequence that appears to be independent of specific cultural differences, although it is influenced by age, particularly developmental age, and by experience. In a landmark 1980 study, Bibace and Walsh¹¹ investigated the relationship between children’s assimilation of their illness experience and Piaget’s stages of cognitive development, especially causal reasoning. In particular, they investigated the degree of differentiation between self and others as a major determinant of differences in children’s conceptions of health and illness.

PRELOGICAL CONCEPTUALIZATIONS

According to Piaget,²⁰ children between the ages of about 2 and 6 years are egocentric and unable to separate themselves from their environment. They are also anthropomorphic and bound by magical thinking. These characteristics typically result in explanations of causality that are undifferentiated, logically circular, and superstitious and that reflect the immediate spatial or temporal cues that dominate their experience. Juxtaposition in time or space is interpreted as having a cause-and-effect relationship (syncretism). They are unable to understand processes and mechanisms because they focus solely on one aspect of a situation or an object without attending to the whole. (For example, if a child of this age looks at two pencils of equal length that are aligned so that one pencil is placed below and an inch to the right of the upper pencil, the child will designate the lower pencil as longer if he or she focuses on the right side and will designate the upper pencil as longer if he or she focuses on the left side.) Children of this age also have little understanding of being sick, except as this is told to them (“Your face feels warm; you should go to bed” or, conversely, “You don’t have a fever; go out and play”). Whereas getting sick may be seen as the consequence of a misbehavior (“If you had worn your boots as I told you to, you wouldn’t have gotten sick”), getting well is seen as the result of following certain rules (“You’ll get better if you stay in bed and drink lots of orange juice”).²¹ This just-world view (good behavior is rewarded and bad behavior is punished, or people get what they deserve) occurs when fairness judgments predominate over physical causality and is referred to as immanent justice. In the youngest children, the outcome of an act is more important than intent (breaking three dishes while helping to clear the dinner table is worse than breaking one dish when climbing up to a cupboard to get some forbidden candy stored there).

Two types of explanation about illness are characteristic of prelogical thinking: phenomenism and contagion. Phenomenism is considered the most developmentally immature explanation of illness causality. In this conceptualization, the child is unable to explain how spatially or temporally remote phenomena, which they ascribe as the causes of illnesses, actually have that effect. Example: “How do people get colds?” “From the sun.” “How does the sun give you a cold?” “It just does, that’s all.”¹¹ Contagion theory explains the cause of illness as people or objects that are proximate, but not touching, the person. The link explaining how the illness is transmitted is magical. Example: “How do people get colds?”… when someone else gets near you.” “How?” “I don’t know—by magic, I think.”¹¹

Raman and Gelman,²² investigating children’s understanding of transmission of genetic disorders and contagious illnesses, found that children as young as early school age were able to distinguish genetic disorders from contagious illnesses in the presence of kinship cues (e.g., “Someone else in the family has this condition.”). In contrast, in the presence of contagion cues (e.g., “Someone coughed in your face.”), preschoolers selectively applied contagious links primarily to contagious illnesses. When they were presented with descriptions of novel illnesses, children were most likely to infer that permanent illnesses were probably transmitted by birth parents rather than by contagion. Thus, even at the late preoperational stage, children appear to recognize that not all disorders are transmitted exclusively by germ contagion.

CONCRETE OPERATIONAL CONCEPTUALIZATIONS

Children aged about 7 to early adolescence are able to distinguish between self and others.¹⁹ Unlike younger children, who have a univariate view of the world, older children are able to understand phenomena from multiple points of view and can understand relationships between events or objects (the pencils from the previous example are understood to be of equal length, just placed differently in space). By manipulating objects, the older child is also able to understand reversibility. However, hypothesis formation is not yet possible. In terms of understanding health and illness, the older child is likely to see external agents causing illness; getting well is a passive experience in which body systems play little or no role.

Two explanations are particularly salient: contamination and internalization. Contamination explanations are characterized by beginning to understand the cause of an illness and how this cause might act. Example: “How do people get [colds]?” “You’re outside without a hat and you start sneezing. Your head would get cold—the cold would touch it—and then it would go all over your body.”¹¹ Internalization refers to understanding that the cause of illness (person, object) might be outside the body, but it causes an illness that is inside the body by being incorporated within it. Typically, the child has little understanding of organs and organ systems. Example: “How do people get colds?” “In winter, they breathe in too much air into their nose, and it blocks up the nose.” “How does this cause colds?” “The bacteria get in by breathing. Then the lungs get too soft [child exhales], and it goes to the nose.” “How does it get better?” “Hot fresh air, it gets in the nose and pushes the cold air back.”¹¹

FORMAL OPERATIONAL CONCEPTUALIZATIONS

Adolescence is marked by the transition to formal operational thinking: the ability to clearly differentiate self from others, the capability for logical thought, and freedom from the need to respond to or be circumscribed by immediate stimuli or real (concrete) objects (i.e., the ability to hypothesize). Adolescents are also able to fill in gaps of knowledge by reasoning from generalizations gleaned from their understanding of the concrete world. The most important feature of this stage is the ability to understand that the source of an illness may be located within the body (host response), even though an external agent interacting with the body may be the ultimate cause of the illness. Thus, they are capable of understanding the general principles of infection, health maintenance, and treatment. Adolescents also can define illness as an internal feeling of not being well, even in the absence of external signs or symptoms.

Formal operational explanations tend to be physiological or psychophysiological. Physiological explanations place the source or nature of an illness within specific body parts or functions. Example: “What is a cold?” “It’s when you get all stuffed up inside, your sinuses get filled up with mucus….” “How do people get colds?” “They come from viruses.… Other people get the virus and it gets into your bloodstream.”¹¹ Psychophysiological explanations are among the most sophisticated responses. Building on the physiological model, the child recognizes that thoughts or feelings can affect how the body functions. Example: “What is a heart attack?” “It’s when your heart stops working right. Sometimes it’s pumping too slow or too fast.” “How do people get a heart attack?”… You worry too much. The tension can affect your heart.”¹¹

SICK CHILDREN’S UNDERSTANDING OF ILLNESS

Children process information about their own illnesses according to a predictable sequence of cognitive maturation ¹² that is similar to their understanding of illness in general. They understand first human causation (especially doing something “wrong”), followed by the germ theory, the differentiation of causes depending on the type of condition, and finally an interactional model, in which physical or psychological susceptibility and external factors act together to cause illness. Although this sequence is no different from that in healthy children, having an illness can influence the rapidity with which children pass through the various stages of understanding. Crisp and colleagues ¹⁴ found that experience with a chronic illness (present for 3 or more months, involving repeated hospitalizations, or interfering with normal childhood activity) increases children’s understanding at various ages; this increase may be especially prominent at the transition points between Piaget’s stages of cognitive functioning. However, this greater sophistication does not necessarily generalize beyond the child’s specific condition. For example, children with cancer do not necessarily know more than their healthy peers about the common cold.¹⁴ Krishnan and associates²³ actually raised the question about whether children with a chronic disease are resistant to learning about new medical information that has no bearing on their own illness.

What Is Being “Sick”?

An important issue is the child’s perception of what is considered illness in the context of self and what is not. Note, for example, the following exchange with an 8-year-old boy with Legg-Perthes disease, published by Brewster:¹² “How does someone get sick?” “Because they touch something. I mean because they eat junk.” “How did you get sick?” “I didn’t.” “Why did you come?” “My leg got hurt.” “How?” “I was born with a leg like this.” “How did it happen?” “I don’t know.” For this boy, having Legg-Perthes disease fits into the same category of personal physical characteristics as having brown eyes or curly hair: “I have it, it’s a fact of my life.” In contrast, being “sick” is a state other than baseline, and the most common sicknesses are viral infections, especially gastroenteritis or colds. When children of this age think about illnesses, they are most likely to consider those conditions that they, their family, and their friends have experienced that preclude them from their usual participation in activities of daily living (e.g., school, playing).

This perception of Legg-Perthes disease or such chronic disorders as cystic fibrosis or inflammatory bowel disease as “not sick” protects the child from feeling different or having to play the sick role continuously. In fact, “forgetting” that he or she has a chronic disease and incorporating the condition into the child’s perception of self can serve as a useful adaptive mechanism. Being sick then becomes a state of having another, different condition that acutely changes or limits the child’s activity or behavior. Maladaptation arises when the child denies an underlying condition that requires special, specific treatments (e.g., enzyme therapy, prophylactic antibiotic therapy, immunosuppression), even when he or she is feeling well. This is especially true when children must alter typical, everyday behaviors (e.g., stop playing) to receive treatment (chest physical therapy), in order to avoid some potential negative outcome (inspissated mucus plugging) in the future.

Did I Cause My Illness?

Despite an advanced understanding of their own disease, children may experience egocentric or magical thinking, especially about causation. In fact, adults may also experience such egocentrism (“I know that my child’s cancer is caused by bad white blood cells, but I wonder if I did something to cause it”). Brewster ¹² found that such magical thinking was especially likely to occur at times of great stress, when temporary regression to earlier developmental stages is common. This regression results in a state of “cognitive dissonance.” For example, children (and adults) may maintain a notion of personal culpability (sense of guilt) despite “knowing better” and understanding logical explanations for illness causation.

In the mid-20th century, Gardner ²⁴ hypothesized that guilt (acknowledgment of “something bad I did”) served to protect parents of children with severe physical illnesses against the feelings of helplessness that might otherwise overwhelm them were they to believe that their child’s condition was merely the result of random chance. In this context, Gardner urged health care personnel to be wary of assuaging guilt feelings of parents—and older children, especially adolescents—too quickly, if such feelings serve a useful purpose in the search for meaning. Eliminating a defense is hazardous without some reasonable expectation that a more constructive concept will take its place. In the final analysis, the clinician’s hearing and understanding what the patient or parent is saying and why are more important than the patient’s or parent’s hearing and understanding what the clinician is saying.

The Evolution of the Concept of Being Sick

Table 9-1 provides insight into the evolution of sick children’s thinking about health—and death—as their illness progresses. This particular schema is most useful when there is an abrupt onset of “disease,” so that the moment of diagnosis is a discrete event coinciding with a perceived state of illness. This is different for children with cystic fibrosis, for example, when the “diagnosis” typically occurs as the result of a laboratory study performed in the context of ongoing concern about the child’s growth or general state of health, rather than in response to an acute event that is easily recognized as signaling being “sick.” In this instance, the moment of diagnosis is less clear and the transition from “maybe” being sick to “really” being sick is more problematic. For children who experience a gradually progressive, almost imperceptible decline over long intervals, the series of discrete steps exemplified by cancer relapse and remission is not as obvious. Over time, however, the general principles of increasing experience, interaction with others in similar circumstances, and the growing understanding that certain skills or functions are being either lost or never fully developing, serve as the basis for these patients’ advanced knowledge about their illness.

TABLE 9-1 Stages in Sick Children’s Acquisition of Information about Their Illness

Unlike children with cancer or other progressively deteriorating conditions, children with non-life-threatening handicapping conditions typically do not progress to the fifth stage (see Table 9-1). Instead, they habituate to the fourth stage. Instead of seeing themselves as “sick,” they are more likely to see themselves as “different.” In fact, children with such conditions as spina bifida, seizure disorder, hemophilia, or cerebral palsy reject the notion of sickness unless they have an illness (e.g., a cold, gastroenteritis) that any member of the general population would consider a sign of being sick.

Hidden Disabilities

Children with such “hidden” disabilities as diabetes, sickle cell anemia, dyslexia or other learning disability, or a psychiatric disorder such as anxiety face unique challenges. In the optimal scenario, such children develop a self-perception that positively integrates their experience of disability and enables them to cope with their limitations and adjust to the expectations of society.²⁵ Unfortunately, this is a cognitive process that frequently does not become manifest until late adolescence or young adulthood, if ever. In the meantime, dependence on peers and diminished acceptance by the peer group, which can be particularly cruel to anyone who is perceived as different, can result in years of social isolation that is either imposed by the group or self-imposed.

Disclosure to Friends

The desire to not tell friends or classmates about an illness or condition is common, especially among preteenagers and young adolescents who are most concerned with social acceptance. Children with an acute onset of disease, such as cancer, frequently have little choice regarding disclosure, because disfigurement (e.g., alopecia, loss of a limb, steroid-induced obesity) is obvious and can lead to merciless taunting if no explanation is offered. News of a diagnosis of cancer tends to spread quickly and the community often reacts with compassion, tempered by misperceptions of what causes cancer and concerns about its transmissibility. Social reintegration after hospitalization may be promoted through, for example, meetings with school personnel and classmates to explain the disease, the side effects of medication, the potential need for frequent hospitalizations, and the fact that cancer is not a contagious disease.

For the child or teenager with a chronic underlying condition such as sickle cell anemia, social reintegration after hospitalization for a pain crisis, for example, is typically less formal and frequently, at the child’s insistence on secrecy, not done at all. Interestingly, the rise of human immunodeficiency virus (HIV) infection and AIDS has had a beneficial effect on the disclosure of sickle cell disease. Because both are blood diseases, children with sickle cell disease who were once reluctant to disclose their condition now prefer to do so, so that classmates will not assume that they have HIV infection or AIDS. In effect, they make their decision on the basis of what they perceive as the “lesser of two evils.”

For other children, whether to disclose their illness can become an inescapable issue when asked to participate in sleepovers and class trips. Such interventions as insulin injections, chest physiotherapy, or colostomy bags may be impossible to hide. Most children are surprised when their friends and classmates are, aside from curious, also supportive.

The Role of Health Education

Health care personnel often assume that providing information to a child will lead to greater understanding and, as a result, better adherence to treatments. Yet this outcome is rarely realized, for several reasons: (1) children have their own conceptualization of what is happening to them; (2) their ability to assimilate information may be limited by their general level of cognitive functioning; and (3) other factors, particularly emotional factors, may further impede understanding.¹²

Although many educational interventions have been implemented in attempts to increase adherence to treatment regimens, only modest improvements have been found in certain clinical outcomes. A meta-analysis of educational programs for children with asthma revealed small to moderate gains in lung function, activity level, school attendance, and self-efficacy and decreases in emergency room visits.²⁶ Such modest findings are fairly typical for educational interventions, especially among children with chronic but nondisabling conditions. Current approaches must be modified in order to realize significant benefits.

In contrast, children and adolescents diagnosed with potentially life-threatening illnesses such as cancer are interested in knowing about their disease and treatment.¹ Knowledge appears to reduce anxiety and depression and to increase self-esteem. For teenagers, increased knowledge leads to more trusting relationships with staff and enhanced coping with painful procedures. The process of information sharing is not a one-time event but rather extends over a series of sessions that address the child’s status and any anticipated changes in treatment.

Differences between children’s views of cancer and asthma probably reflect the acuity, novelty, and perceived seriousness of the cancer diagnosis, as opposed to the low-level chronicity and the mistaken perception that asthma is not a life-threatening condition. Motivation is a key element in learning. Helping child and adolescent patients understand the long-term seriousness of a particular condition is hampered by their limited ability to understand consequences that are not immediately observable. Concrete information (e.g., viewing radiographs, seeing pulmonary function test results) and repeated experience may be helpful in hastening the process of understanding.

Before information is given, it is crucial to discover the child’s conceptions about the medical situation and how such understanding may comfort the child. For example, an 8-year-old girl was watching the birth of her sibling. As the head emerged, she called out, “Her brains are coming out!” The obstetrician became extremely upset at what he perceived the girl to be saying and later vowed that he would never again have a sibling present at a delivery. However, on later investigation, the girl’s exclamation was a purely observational comment. The whitish-gray vernix covering the molded head reminded her of pictures of the brain that she had seen in a magazine. She was not upset but instead excited and even delighted that she could relate the delivery to something in her experience. A more appropriate response from the obstetrician would have been “Yes, you’re right. The baby’s head is coming out, and the brains are inside the head.”

This vignette emphasizes the importance of accurate communication between health care providers and children, in order to avoid the pitfalls of literal interpretation. In this instance, the child used imagery that was familiar to her to matter-of-factly describe an event. However, her comment was misinterpreted and inadvertently put the physician into a state of distress. How often do physicians do this to patients when they say that an injection is like a bee sting (and, therefore, something to be dreaded and avoided) or that an injection will not hurt (and, as a consequence, lose all credibility)? Clearly, a more appropriate preparation might be “This is going to hurt. You can cry or sing as loud as you want. If you sing, can I sing, too?”

CHILDREN’S ADAPTATION TO STRESS

Coping, or adaptation to stress, entails managing emotions, thinking constructively, regulating and directing behavior, controlling autonomic arousal, and acting on both social and physical environments to alter or decrease stressors.²⁷ Both mental and physical health are strongly influenced by exposure to and ability to cope with stress.

Eisenberg and colleagues ²⁸ defined three aspects of coping, or self regulation: regulation of emotion (emotion-focused coping or emotional regulation); regulation of the situation (problem-focused coping); and regulation of emotionally driven behavior (behavior regulation). Compas and colleagues²⁷ add that the child’s or adolescent’s developmental level both contributes to and constrains the repertoire of mechanisms available for coping. Thus, infants have the capacity to self-soothe (e.g., sucking), a primitive, automatic, reflexive behavior. Conscious, volitional self-regulation does not appear until the development of the concept of intentionality, representational language, metacognition, and the capacity for delay. These are characteristics that first begin to emerge during the late preoperational or early concrete operational stages and are unlikely to be seen until early school age.

Rudolph and colleagues,²⁹ when considering a child’s reaction to a stressor, identified three particular portions of that reaction: the coping response (the intentional physical or emotional action in response to a stress); the coping goal (the objective or intent of the coping response, which is usually to reduce the aversive effects of the stressor); and the coping outcome (the specific consequences of the person’s deliberate, volitional attempts to reduce the stress). Attempts at coping may become maladaptive when the consequences of the coping response meet the initial coping goal but create a more severe stressor in its place. For example, a child might develop a headache in anticipation of a math test. The headache is severe enough that the child stays home from school. Absence results in not having to take the math test (realization of primary goal) but also causes the student to miss a key lesson in social studies, which then causes him or her to fall behind in that subject. Unless the student makes up the work quickly and does extra studying (added stress), it is likely that another headache will occur at the time of the social studies test. Over time, the headache becomes recurrent because of sequential isolated stress and then, eventually, progresses to chronic, persistent pain because of anxiety about poor academic performance in many areas (overwhelming stress).

Coping responses can be characterized according to a number of different types. Behavioral versus cognitive coping distinguishes between external modes of coping (e.g., overt, observable actions such as seeking information or support; holding someone’s hand) and internal modes of coping (e.g., constructive self-talk such as “I can do this”; diversionary thinking). Another type distinguishes between problem-focused coping (eliminating or altering a distressing situation; constructive problem solving) and emotion-focused coping (regulating one’s emotional reaction to a situation: positive reframing, acceptance). Primary versus secondary coping highlights the differences between altering the situation and maximizing the person’s fit to the current situation in ways that are similar to problem-versus emotion-focused coping. Approach versus avoidance

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