Child Health Psychology

Barbara G. Melamed, Karen A. Matthews, Donald K. Routh, Brian Stabler, Neil Schneiderman, Barbara G. Melamed, Karen A. Matthews, Donald K. Routh, Brian Stabler, Neil Schneiderman

• Editorial: Psychology Press
• Año: 2013
• ISBN:
  9781134989249
• Edición: 1
• Categoría: Psychology
• Categoría: History & Theory in Psychology

This unique text offers an interdisciplinary collection of the most current articles concerning the scientific study of Child Health Psychology. The subjects of many articles are applicable to pediatrics, family medicine, child nursing, developmental, clinical child, and pediatric psychology. Emphasizing the scientific basis of the field, this empirical research is invaluable to the specialist, teacher, or student seeking the most contemporary research methods used to study psychological aspects of children's health care.

V	PERSPECTIVES ON CHRONIC HEALTH PROBLEMS

Perspectives on Chronic Childhood Illness

Brian Stabler

School of Medicine

The University of North Carolina at Chapel Hill

Medical science has allowed many children to survive diseases that were once considered fatal. Children with chronic illnesses such as leukemia and cystic fibrosis are now followed regularly in the continuity care clinics of many hospitals and medical centers. The psychological and behavioral consequences of this development are now apparent; a “new morbidity” has become the major focus of pediatric care (Haggerty, Roghmann, & Pless, 1975). As a result, many chronically ill children enter the sphere of influence of pediatric health psychologists practicing in such clinical settings. At this juncture, advances in biomedical technology often outdistance the armamentarium of psychologists who are frequently called on to provide, or plan for, services to chronically ill chilren and their families. For this reason, empirical research on the emotional, social, and behavioral aspects of many chronic childhood illnesses have been a growing initiative in pediatric health care (Varni, 1983; Routh, 1987). To ensure that clinical program development is based on empirically sound behavioral research, demands close collaboration between psychologists and medical professionals (Stabler, 1979). This section reports work that arises out of such liaison. These findings add to a growing literature that detail the fact that psychologically, it is often overwhelming for a family to care for a chronically ill child, but that somehow it is done, and done well by most families. What are the problems with which families must cope? How may family stress affect the course of a child’s illness? Which behavioral interventions are most effective? And, how does the level of compliance with medical regimen impact on the caregiving process? These questions and others are addressed in different ways by each of the articles to follow. However, to familiarize the reader, a few observations about several of the psychological issues frequently faced in the care of chronically ill children and their families are worth reviewing.

THE HEALTH CARE TEAM

The comprehensive care of chronically ill children and their families calls for a range of caregiving capacity usually beyond the ability of any single health profession to provide (Willis, Elliott, & Jay, 1983). Consideration of biomedical, psychosocial, and behavioral factors requires the expertise of many professionals including social workers, physicians, physicial therapists, nurses, recreation therapists, psychologists and other health care professionals (Rothberg, 1981; Stabler & Simeonsson, 1986). The concept of a health care team implies a specific level of coordinated activity in which each discipline plays a prescribed role. This requires that members of the team have a familiarity with the functions of other team members, and also that regular communication ccurs among team members regarding caregiving plans and activities. Such teamwork is particularly important in treating pediatric patients in which isues relating to school placement, effect of the illness on psychological development, the stress of the illness on the family or marital stability, and the need to actively engage the family in caregiving, all require the input and support of several team members.

Psychologists operating within the team structure may find that their role fluctuates depending on the needs of the patient (Stabler & Murray, 1973). Sometimes there may be a need for psychodiagnostic testing, another time a need for family counseling, while there may be a continuing need for the psychologist to contribute to overall patient care planning activities of the team (Brantley, Stabler, & Whitt, 1981). Thus the psychologist functions as a clinician, diagnostician and as a resource consultant to the team. Lately, these traditional roles have been supplemented by the contributions many psychologists make through their clinical research (Varni, 1983). Perhaps it is through the still emerging role of clinician–scientist–consultant that pediatric health psychologists will contribute most to the care of chronically ill children. Without an effective system of psychological intervention based on empirical psychological findings, new initiatives are unlikely to arise and consequently reliance may be placed on methods of psychological care transposed from traditional psychiatric practice (Varni & Dietrich, 1981), which may not be appropriate for pediatric patients.

THE IMPACT OF CHILDHOOD CHRONIC ILLNESS ON THE FAMILY

Because of the understandable tendency by medical caregivers to focus on the sick child as patient, it is relatively easy to overlook the fact that in many ways the family of the chronically ill child is equally in need of care and attention. In one sense, the excellence of medical care given to chronically sick children may create other problems. Because many sick children may now expect to live for indefinite periods, albeit with constant care and attention usually given by the family, families are being faced with the task of trying to raise a medically “special child” in as normal a psychological manner as possible. It is recognized that such demands may place enormous strain on marital stability (McCollum, 1981), sibling relationships (Willis, Elliott, & Jay, 1983), and ultimately on the developing sense of self-esteem in the sick child (Mattsson, 1972). It has also been observed (Burton, 1975) that the presence of a chronically sick child within a family may actually serve to bring some families closer together.

The initial response of many families on learning that their child has a chronic, possibly life-threatening disease, is one of shock and disbelief. Parents may respond by resisting further explanation by medical staff, become angry at the physician making the diagnosis, or may seek other, more acceptable opinions in a process often referred to as “doctor-shopping”. Often such actions disguise the fact that parents feel intense guilt or responsibility for the child’s illness, and seek to discharge their anxieties through deflecting activities such as searching for other causes besides the obvious. For example, some families may believe that a lack of proper diet, or failure to go to bed on time, or eating too much candy may play a causal role in the onset of juvenile diabetes (Zeiclel, 1973). Such perceptions serve an important psychological purpose in allowing at least a temporary sense of control over a situation that may otherwise threaten to become emotionally overwhelming.

In cases when the child’s disease is transmitted genetically, such as hemophilia, cystic fibrosis or juvenile diabetes, the parent’s sense of guilt may be heightened and if this fact is not recognized, it may become an impediment to treatment (Travis, 1976). If parents are not adequately counseled and supported during this early phase of treatment, unrealistic and inappropriate relationships between parent and child may evolve as a result (Willis, Elliot, & Jay, 1983). For example, a common parental reaction is to treat the sick child as extremely delicate and vulnerable, shielding the child from many normal childhood experiences such as overnight visits, camping, and sports. Such overprotection interferes with the child’s developing age-appropriate skills and retards emotional maturity. A similar response is seen when parents become too rigid in following physician prescriptions. A study of children with cystic fibrosis revealed that those children with overly rigid parents, who followed medical prescriptions very precisely, had lower scores on a test of selfesteem than did children whose parents were more relaxed in their adherence to medical regimen adherence (Johnston, Gershowitz, & Stabler, 1981). By providing appropriate support at the time of diagnosis, and by regularly reviewing and clarifying the family’s understanding, physicians may circumvent later problems.

ADOLESCENT PATIENTS WITH CHRONIC ILLNESS

An experienced pediatric nurse at a large tertiary care medical center once said, “… if only our teenage patients could be more patient, they would be far better patients!” This statement reflects a number of issues that face medical caregivers who relate to adolescents with chronic illness. Adolescence is a time when a child struggles with issues of autonomy, seif-reliance and dependency on others. For the family of an adolescent patient, this often translates to an issue of giving up responsibility for making sometimes crucial decisions, and a recognition that the parents may not be as competent to make life decisions for their child as they once were.

An adolescent is not simply a phsyically larger child, but an individual concerned with the process of becoming socially, sexually, and emotionally cornpetent. As a result, it is often difficult for parents and medical caretakers to require the adolescent with a chronic illness to take on the role of “patient” (Hofmann, Becker, & Gabriel, 1976). Issues that are frequently observed in this situation include threats to body image (e.g., effect of chemotherapy on hair loss), dependency (e.g., reliance on parents for physical therapy or medication), and sexuality (e.g., repeated invasive physical examinations). Surprisingly, many studies of the psychological impact of illness on adolescents have not shown significant longterm effects (Kellerman, Zeitzer, Ellenberg, Dash, & Rigler, 1980). In a study of several types of chronic illness, Kellerman’s group found that patients with uncertain prognosis were more anxious than those with a stable or certain prognosis. The study reported that no difference was found in measures of self-esteem between the chronically ill adolescents studied and healthy controls. Wright, Schaefer and Solomons (1979) point out that the greatest threat to self-esteem for adolescent patients is disfigurement or physical handicap. Steinhausen (1983) compared a group of adolescents with cystic fibrosis and a group with asthma to find what effect these conditions had on their psychosocial adjustment. His data were gathered from teacher reports and parent observations and suggested that a significant increase in psychological problems was correlated with level of disease severity. Steinhausen wisely counsels against comparing groups of adolescents with widely differing disease conditions, because generalization about adaptation may be inappropriate or invalid.

Wright, Schaefer, and Solomons (1979) have outlined the major psychological areas of stress experienced by adolescents with chronic illness, which include low self-esteem, depression, and sexual concerns. However, it should be noted that many chronically ill adolescents adapt well to their limitations and live productive lives (Pless & Pinkerton, 1975). The observation that chronic physical illness necessarily leads to psychological maladaptation is not valid. Chronic illness is a highly specific psychological stressor that taxes the coping capacity of the child and family. What precipitates breakdown in normal psychological functioning in some patients and not others is unclear. One point is clear, however; no single factor can be implicated as primarily responsible for poor adjustment.

MEASUREMENT OF COMPLIANCE IN PEDIATRIC POPULATIONS

Relatively little research has been focused on medical compliance within the pediatric population (Masek, 1982). Compliance issues for pediatric patients are particularly important for two reasons. First, variations in the effect of medical therapy may be more pronounced in children, particularly in younger children, and failures in compliance with medical regimen may serve to mask clinically important treatment effects. Second, children are not often able to verbalize their feelings or impressions about their health status. Consequently, health care providers rely on clinical examination, biomedical tests, or the subjective observations of a parent. Partial or noncompliance with the prescribed regimen makes an already sensitive clinical task much more difficult. From a research perspective, there are several ways in which questions of compliance may be operationally defined. Litt and Cuskey (1980) used a definition of compliance with contraceptive counseling for teenagers, which included a range of compliance indicators such as not becoming pregnant, not missing more than two contraceptive pills a month and returning for followup. Other studies have focused on a variety of parental attitudes toward health as indices of likelihood of compliance with medical prescription. For example, mother’s knowledge of the medication name, dosage, and frequency of administration, and actual administration of the medication ...