How Do Families Cope With Chronic Illness?
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How Do Families Cope With Chronic Illness?

Robert E. Cole, David Reiss, Robert E. Cole, David Reiss

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eBook - ePub

How Do Families Cope With Chronic Illness?

Robert E. Cole, David Reiss, Robert E. Cole, David Reiss

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About This Book

Because chronic disorder is becoming an ordinary feature of family life and development, understanding its impact has become critical. This volume, and the conference proceedings it reports, represents a major effort to examine the family's response to chronic physical or psychopathological illness in one or more of its members. Recent data are revising our notions of chronic illness. Evidence is mounting that chronic psychiatric disorders reflect, in part, abnormalities of brain structure and function. In this sense, they are, in part, medical disorders. On the other hand, a number of traditionally labeled medical disorders produce a broad range of psychological symptoms and are exquisitely sensitive to psychosocial influences. Families undergo a complex process of adaptation during which their response to stress and their fundamental beliefs about learning and parenting change. These beliefs endure and are difficult to alter. By examining the processes in a wide range of chronic conditions, this volume helps to identify the common, underlying processes of adaptation. The first three chapters concern the families' responses to disorders that are distinctly medical; the next three focus on families' responses to "grey zone" disorders or anomalies that appear early in life, minor physical anomalies, and communication handicaps; and one chapter focuses exclusively on schizophrenia. The last chapter reflects an effort to develop a model based on the experience of researchers with both psychiatric and medical illness.

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Publisher
Routledge
Year
2013
ISBN
9781134769377

Chapter 1

Family Communication and Type 1 Diabetes: A Window on the Social Environment of Chronically Ill Children

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Elaine A. Blechman
University of Colorado at Boulder
Alan M. Delamater
Wayne State University
Successful adaptation to the discovery that a child has diabetes demands radical family reorganization. The medical regimen for the newly diagnosed Type 1 diabetic child complicates every aspect of daily life and childrearing. Meals and exercise must be planned, insulin administered, and blood glucose levels monitored. Depending on the glucose test results and the advice of the health-care team, changes in food, exercise, and insulin must be introduced. The redeployment of attention, time, money, and community linkages required for success with this complex regimen inevitably affects every family member. Despite the difficulties, prospective studies indicate that more than 90% of children (Kovacs, Feinberg et al., 1985) and parents (Kovacs, Finkelstein et al., 1985) newly confronted with the diagnosis of diabetes in a child have a successful psychological adaptation 9 months later.1 It is clear, however, that many children who have satisfactory overall psychological adjustment may not cope so well with the regimen, as compliance problems are common even among newly diagnosed patients (Delamater, 1990).
How do effective families cope? Our purpose in this chapter is to begin to answer this question. We do this by examining conventional wisdom about families of diabetic children, presenting a contrarian model, reviewing the literature on family factors and diabetic youths, and illustrating the model with data collected in our laboratories.

Dominant Beliefs in Family Research

Knowledge about how the successful majority of families of diabetic children cope (and of the coping strategies of families caring for children with other chronic illnesses and handicaps) is limited because of a deficit-oriented belief system that permeates family research. In this section, we acknowledge these dominant beliefs. Later, we present a contrarian model.
Hypothesis Testing is More Important Than Description. The deficit hypothesis, derived from Minuchin’s theory of the “psychosomatic family,” asserts that the diabetic child’s poor metabolic control is the product of dysfunctional family interaction (Minuchin, Rosman, & Baker, 1978; Rosman & Baker, 1988). Tests of this hypothesis (beginning with Minuchin’s own reports) dominate the family-research literature. Descriptive data contrary to the deficit hypothesis seem to be viewed as unworthy of dissemination. It is particularly difficult to find detailed descriptions of families of physically hardy, diabetic children (those who maintain good metabolic control even when confronted with psychological stress) (Blechman & Brownell, 1988).
Dysfunctional Families are More Interesting Than Effective Families. Consistent with the deficit hypothesis, family research has focused on the unsuccessful minority of families with children in poor metabolic control, ignoring the effective families that produce resilient, physically hardy (albeit diabetic) children. Although studies often compare dysfunctional and “normal” control families, these “normals” are distinguished by their lack of clinically judged maladaptation rather than by objective evidence of successful coping. Some recent exceptions to this trend are presented here (Blechman, Carr, Chanler, & Saenger, 1989; Hanson, Henggeler, Harris, Burghen, & Moore, 1989).
“Psychosomatic” Family Processes Directly Stress the Diabetic Child. The direct-stress hypothesis, central to Minuchin’s “psychosomatic” family theory, contends that exposure to dysfunctional family discussions causes, in the short run, elevated production of stress hormones in the diabetic child; in the long run, brittle or uncontrolled diabetes. Although it is widely believed that Minuchin’s research supports the direct-stress hypothesis, Coyne and Anderson (1988, 1989) have shown that Minuchin’s research is fatally flawed and that the data cannot support the direct-stress hypothesis. Reviewing other studies of the direct-stress hypothesis, Goetsch (1989) concluded that support is equivocal because most studies have employed faulty research methods.
Well-controlled laboratory studies of physiological effects of acute psychological stress (Delamater, Bubb et al., 1988; Gilbert, Johnson, Silverstein, & Malone, 1989) critically tested and found no support for the direct-stress hypothesis. However, in a recent correlational study using self-report methods, a direct effect of stress (including family stress) upon metabolic control was shown in adolescent patients (Hanson, Henggeler, & Burghen, 1987a). Metabolic control may also be obstructed by avoidant coping responses (Delamater, Kurtz, Bubb, White, & Santiago, 1987) and/or insufficient regimen adherence (both of which may be indirectly fostered by family stress). Other studies similarly suggest that a multiplicity of pathways lead to poor control and a multitude of child and family skills are required for good control (Delamater, Smith, Kurtz, & White, 1988; Hanson et al., 1987a).
Homeostasis Maintains Diabetic Symptoms and Prevents Family Change. Central to Minuchin’s structural family therapy (Minuchin, 1974; Minuchin & Fishman, 1981) is the widely accepted belief that dysfunctional families resist change (especially during treatment) because of inherent pressures to maintain the status quo. These same pressures maintain the diabetic symptoms initially caused by stress.
Structural therapists place great emphasis on the strength of a family’s homeostatic mechanisms which they describe in terms of rules governing how family members interrelate. These rules, viewed as beyond the awareness of family members, must change in order for the family’s structure and thus the symptomatic behaviors of family members to change. (Anderson & Stewart, 1983, p. 18)
Recast in social-learning terms, the homeostasis hypothesis may involve a two-stage reinforcement process. First, family members attend to symptomatic behavior, strengthening (via positive reinforcement) symptomatic behavior and weakening (via extinction and punishment) healthy, nonsymptomatic behavior. Second, family members ignore all but illness-related problems, strengthening (via negative reinforcement) an ineffective communication process ridden with avoidance, denial, and unacknowledged conflict about “nonexistent” problems of marital dissatisfaction and sibling strife.
Stated this way, the homeostasis hypothesis sounds at first like a reasonable account of the conditions that maintain symptoms and family dysfunction. On closer inspection, it is clearly an inadequate and logically flawed perspective. Prima facie evidence confirming the homeostasis hypothesis does not emerge each time a family does not want treatment or does not change during treatment. The therapist or the intervention may be ineffectual or mismatched to the family. The diabetic child cannot be judged “symptomatic” without carefully collected, objective measures of metabolic control. Family processes cannot be judged dysfunctional without independent and objective corroboration that these processes reliably and substantially discriminate between families of diabetic children in good and poor metabolic control.
Prima facie evidence that ineffective communication causes the diabetic child’s poor metabolic control does not emerge simply because the two conditions are observed together. The child’s poor metabolic control may have stressed the family beyond its limits of tolerance or a third variable such as poverty may have caused both poor metabolic control (via inability to get good medical care and resources for regimen adherence) and family disorganization. Poor metabolic control and ineffective family communication may also be maintained by (and contextually appropriate in response to) a health-care system that holds parents responsible for whatever happens to the diabetic child, provides inadequate training for the job of parental paramedic, and chides parents for worry and overinvolvement (Coyne & Anderson, 1989).

A Contrarian, Competency Model

We believe that preventative interventions for families of newly diagnosed diabetic children must be informed by descriptions of how families with well-controlled diabetic children communicate.
Blechman (1990b) proposed a social-learning model of effective family communication to describe the promotion of competence (and the diminution of psychopathology) in family members. The propositions are: (a) A good mood signals prolonged contact with pleasurable consequences and optimal preparedness for learning and performance. (b) Effective family communication promotes good moods in all family members, (c) Family members who are often in good moods are primed for physical hardiness and competence and shielded from psychopathology, despite cultural, biological, and socioeconomic handicaps. We have expanded the third proposition to include the construct of physical hardiness and address the problem central to this chapter.
In the following section, we repeat the operational definitions of key constructs, define physical hardiness, and consider the expanded third proposition in light of data from the research literature and our laboratories.

A Model of Effective Family Communication

Proposition 1: A Good Mood Signals Prolonged Contact with Pleasurable Consequences and Optimal Preparedness for Learning and Performance

The functional properties of a good mood are summed up in vernacular phrases like, “I’m on a roll.” “I’m ready to take on the world.” “Everything’s coming up roses.” A good mood signals that biological, cognitive, and behavioral processes involved in learning and performance are optimal. A bad mood signals that functioning is suboptimal. Actions undertaken during a good mood should have numerous positive consequences that reinforce successful functioning along with efforts to stay in a good mood and keep others in a good mood. Actions undertaken during a bad mood should have numerous negative consequences that obstruct successful functioning, and perpetuate own and others’ bad moods.
This proposition predicts that a diabetes educator would be most likely to succeed in teaching skills to the newly diagnosed diabetic child and family if all family members are in good moods during the teaching session (or at least not in bad moods). Later on, child and family would be most likely to perform their newly acquired skills when they are in good (or neutral) moods.
Moods. Moods are summary statements about the individual’s response to the environment. Moods, defined this way, are readily assessed by asking, “How are you?” or, by daily administration of a mood adjective checklist and an inventory of daily hassles (Wills, 1990). A good mood (“I feel great!”) is a statement that every aspect of individual interaction with physical and psychological self and physical and social environment is successful and that the consequences are highly reinforcing. A bad mood (“Don’t ask!”) is a statement that every aspect of individual interaction with self and environment is unsuccessful and that the consequences are punishing. Cognitive processes underlying learning and performance such as attention, perception, and memory are suboptimal in a bad mood and optimal in a good mood (Dumas, 1990; Hatfield & Rapson, 1990; Jouriles & O’Leary, 1990; Leventhal & Tomarken, 1986).
Preparedness for Learning and Performance. Preparedness for learning and performance can be assessed by observation of behavioral and physiological responses to stressful stimulation. Attentive, exploratory behavior that keeps the individual in maximal contact with important features of the current environment signals optimum opportunities for learning and performance; behavior that escapes or avoids the current environment signals minimal opportunities.
New Information Questions. A prime behavioral index of preparedness for learning and performance, useful as soon as a child can talk, can be based on the frequency with which the individual asks new information questions during challenges (Plutchik & Plutchik, 1990). New information questions are counted only if they elicit answers (and thereby put the individual in contact with important features of social and nonsocial tasks). The index excludes unanswered questions, questions that were asked and answered earlier in the same conversation (showing inattentiveness), and “why” questions about motives (“Why do you always ignore what the doctor tells you to do?”). Motivational and ad hominem “why” questions are usually answered with irritation or anger, whereas scientific “why” questions elicit new information.
Beginning with the announcement of the diagnosis of diabetes, the diabetic child and the family are confronted with a series of challenges. One such challenge to the child might be summed up as, “Figure out how to eat food you like, that other kids eat, that your parents can afford, and still get good blood-glucose readings.” The frequency with which child and family ask each other and the medical team relevant new information questions in response to this challenge should predict successful coping with the challenge and accompanying good moods. Families that ask few new information questions may instead engage in mutual blaming (in the form of motivational “why” questions) or avoidant coping (denying that any dietary problem exists). The likely outcome is poor metabolic control.
Mood Regulation. Mood is maintained and intensified through actions that contact consequences congruent with the mood. Mood is shifted through actions contacting mood-incongruent consequences. The child who “whistles a happy tune” despite sadness has a pleasant impact on other people; their actions help dispel the child’s sadness. In our model, mood regulation is an indirect product of modification of one’s behavior and of other’s behavior rather than a direct product of modification of thoughts (e.g., by saying “I have a lot of good reasons to be happy”) and feelings (e.g., by imagining happy events). Notice that the process of mood regulation envisioned in this model is one of interpersonal communication. In the process, the child’s mood is modified and others’ moods are affected as well.
Some people are particularly skilled at shifting themselves and others into good moods despite contrary circumstances. The emotion-regulation skills required to shift from a bad mood to a good one are gradually developed (Kopp, 1989). The acquisition of these skills is influenced by the child’s innate reactivity threshold (Saarni & Crowley, 1990). These skills are learned through communication with parents, beginning with the parents’ first attempts to soothe their crying newborn (Lindahl & Markman, 1990) and culminating in parents’ responses to their adolescents’ complaints (Wills, 1990). Unarmed with emotion-regulation skills, children are at risk for social incompetence (Parke & Asher, 1983) and for drug use in adolescence as an artificial method of mood regulation (Wills, 1990).
Mood regulation may be particularly difficult for chronically ill children. Confronted with an illness that marks them as different and interferes with all their activities, it is not surprising that diabetic and asthmatic children score higher on depression than healthy children (Nelms, 1989). In a recent study of 50 diabetic adolescents, the learned helplessness attributional style was found to be a significant predictor of both depression and poor metabolic control (Kuttner, Delamater, & Santiago, in press). Diabetic children, in particular, may have difficulties with mood regulation that have a physiological basis. Illness symptoms may be misperceived as signs of a bad (anxious or sad) mood. Diabetic children in poor metabolic control may be caught in a positive feedback loop with hyperglycemia potentiating stress responsiveness and punishing the child’s erratic efforts to relax and feel better.
In summary, the skill of emotion regulation (getting yourself up when you are feeling down) is learned gradually in the course of child development. Because a good mood is a prerequisite for optimum lear...

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