Childhood chronic illness as a family stressor.

Journal of Pediatric Psychology, Vol. 17, No. 1, 1992, pp. 33-47

Childhood Chronic Illness as a Family Stressor1 Kim W. Hamlett2

David S. Pellegrini Catholic University of America

Kathy S. Katz Georgetown University Hospital, Child Development Center Received September 14, 1990; accepted December 5, 1990

Investigated the impact of childhood chronic illness within a family context. We interviewed 30 mothers of 6- to 14-year-old children with asthma or diabetes and 30 mothers of healthy children of the same age and sex. Family functioning, extrafamilial social support available to mothers, and child life stress events were examined in relation to the children's psychological adjustment and illness events. The mothers of asthmatic children reported a greater number of internalizing behavior problems in their children, perceived their own social support as less adequate, and reported a greater number of stressful events. Regression analyses demonstrated that family functioning, maternal social support, and chronic illness were significantly related to the psychological adjustment of the child. The importance of family functioning and resources available to the family, such as social support, are discussed as protective influences in coping with childhood chronic illness. KEY WORDS: childhood chronic illness; families; social support. 'This article is based on the first author's doctoral dissertation, submitted to the Department of Psychology at The Catholic University of America under the supervision of David Pellegrini and Kathy Katz. Special thanks also to Suzanne Bronheim, Joseph Garfunkel, and an anonymous reviewer, for comments on an earlier draft of the manuscript. The study was supported by a NIMH National Research Service Award (Grant #1F31 MH09388-01) awarded to Kim W. Hamlett. 2 A11 correspondence should be sent to Kim W. Hamlett, University of Virginia Health Sciences Center, Department of Pediatrics, Pediatric Psychology, Kluge Children's Rehabilitation Center, 2270 Ivy Road, Charlottesville, Virginia 22901. 33 0146-8693/92/020O0033I6.50/0 O 1992 Plenum Publishing Corporation

Downloaded from http://jpepsy.oxfordjournals.org/ at Monash University on June 3, 2015

University of Virginia School of Medicine

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Hamlett, Pellegrini, and Katz


The survival rate and quality of life for the chronically ill child have improved remarkably over that of the child with the same disease 20 to 30 years ago, resulting in a greater need for understanding of the psychological development of such children as they master the normal developmental tasks of childhood while coping with long-term demands and responsibilities associated with chronic illness. An important focus of study has been the examination of chronically ill children as a population at risk for the development of behavior disorders because of the significant stresses associated with a chronic illness. The epidemiologic study of Graham, Rutter, Yule, and Pless (1967) was among the firsf to report poorer psychological adjustment among chronically ill children than in the general population. Other studies have supported a greater incidence of behavior problems within this population: Some studies report rates of psychological maladjustment 10-15% higher among chronically ill children in comparison to healthy controls matched for age, sex, race, and socioeconomic status (e.g., Pless, Roghmann, & Haggerty, 1972; Satterwhite, 1978). In both of these studies, family functioning emerged as the most powerful predictor of psychological functioning in chronically ill children. Recent studies have supported the psychological vulnerability of children with chronic illnesses or physical conditions. Wallander, Varni, Babani, Banis, and Wilcox (1988) found that mothers of chronically ill and physically handicapped children perceived their children to have a greater number of behavior and social competence problems than would be expected. However, the social and behavioral adjustment of this sample was better than that of a comparison sample of children referred for outpatient mental health services. Similar findings were reported by Thompson, Hodges, and Hamlett (1990) in their examination of the psychological adjustment of children with cystic fibrosis. Thompson et al. found the incidence of behavior problems or psychopathology in children with cystic fibrosis fell between that of psychiatrically referred and nonreferred community samples with comparable symptom reports of worry, self-image, and anxiety in children with cystic fibrosis and psychiatrically referred children. In both studies, the rate of behavioral adjustment problems was above that of healthy nonreferred comparison groups but still below the level likely to initiate a referral to mental health agencies. This incidence rate may reflect problems of adjustment or adaptation to the impact of a chronic illness on developmental tasks rather than frank psychopathology. This view may help to reconcile earlier criticisms (e.g., Tavormina, Kastner, Slater, & Watt, 1976) regarding the psychological vulnerability or "emotional deviance" of chronically ill children. Drotar (1981) argued that in interpreting group differences on behavior ratings of chronically ill and healthy children, the unique circumstances posed by the chronic illness should be considered. With the management of childhood chronic illness, there is a lifelong process of adaptation as illness-related

Chronic Illness

35


stressors and developmental stages and tasks give rise to corresponding changes to the child's needs in coping with chronic illness. Along with the changes in adaptation over time in the coping tasks of the chronically ill child or adolescent, there are also attendant changes within the family system as family members adapt. The effects of family environmental factors, such as stressful life events experienced by the child or family, on the onset of illness events in children, are well documented (J. T. Johnson, 1982). Studies have demonstrated the cumulative effects of life stressors in relation to the incidence of normal childhood diseases, such as respiratory infections, and the management of childhood chronic illness (Boyce et a!., 1977; Heisel, Ream, Raitz, Rappaport, & Coddington, 1973). The potentially disruptive effect of stressful events on family routines such as adherence to medical routines may contribute to an increase in illness events. The quality of family functioning may then serve to buffer or intensify the disruptive effects of stressful events. S. B. Johnson (1985) noted that the child's adjustment to a chronic illness is a function of the disease, individual characteristics of the child, and environmental factors within the child's life. In examinations of the psychological impact of childhood chronic illness, increasing attention has been placed on the family as a potential mediating variable that helps determine the developmental outcome of the child. The family is viewed as a recipient of the stress inherent to the presence of a chronic illness and as a vital force that may act to ameliorate or exacerbate those stressors (Masters, Cerreto, & Mendlowitz, 1983). The quality of relationships within the family appears to exert an important effect on the management of the illness and the psychological outcome of the child. The unique characteristics and strengths of the family are likely to strongly influence the child's and family's appraisal of the stressors associated with the illness and, as a result, shape the coping response of the child and the family. The competencies and resiliency of a family may serve as a protective factor, defending the child from the disruptions and crises attendant to chronic illness. The investigation of extrafamilial support may also provide important information regarding the influence of the child's own coping. As Cochran and Brassard (1979) have noted, the personal social networks of the family and of the parents in particular, often exert an important effect on the child and his or her development. The effects of these networks are seen in the parents' access to ideas and information about child rearing, emotional and material assistance, and the cognitive and social stimulation of the child. Further evidence for this effect is provided by Wahler (1980), who reported an inverse relationship between the number of social contacts available to mothers and the number of behavior problems they attributed to their children. Evidence for the importance of the availability of extrafamilial support of families of chronically ill children is provided by Venters's (1981) investigation

36



of familial coping with cystic fibrosis. Structured interviews revealed that sharing of the burdens and responsibilities of management of the illness among family members was indicative of higher family functioning, as was sharing the demands of the illness with at least one person outside the family. Kazak (1989) and Kazak, Reber, and Carter (1988) have demonstrated that parents of handicapped and chronically ill young children are likely to have smaller, denser social networks, and that higher density is related to increased parental distress. Density, defined as the degree to which members of a network interact and are known to each other, is a structural quality of social support. It is not yet established how this structural characteristic of the social networks is related to the parental perception of adequacy of or satisfaction with social support. It could be argued that a denser or more interdependent social network might give rise to a "diffusion of responsibility" among its members, contributing to perceptions of less adequate support or helpfulness by the parents of the chronically ill child. Research is still needed to delineate the influence of important family resources such as the quality of family relationships and family stress, as well as social support available to family members, for their potential influence in moderating the impact of childhood chronic illness. While previous studies have examined the availability of social support to families of chronically ill children, scant attention has been paid to the discussion of satisfaction with or adequacy of social support within this population. This dimension may be very important as need for support experienced by the mother of a chronically ill child is likely to be quite different than that experienced by a mother of a healthy child. Although both mothers may have the same number of supportive relationships, the adequacy or perceived satisfaction with the support provided by these relationships may differ. This qualitative difference may be a critical one in the examination of the protective influence of social support in coping with childhood chronic illness. The intent of this study was to examine childhood chronic illness within the family context. This issue was explored through a design that allowed for examination of a variety of family factors: child life stress events, family functioning or the perceived quality of family relationships, and the adequacy of the resources available to the mother through extrafamilial social support. These variables were investigated with regard to their respective effects on the psychological adjustment of the chronically ill child and on the number of illness events experienced over a 3-month interval. Families of children with asthma and juvenile diabetes were selected because both represent "invisible" conditions, which are not identified by the child's appearance, and both share a number of long-term medical management issues. It was hypothesized that family functioning and the resources available in the form of maternal social support would serve as potential moderators of the impact of chronic illness on the psychological adjustment of the child. Specifi-

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37

cally, it was thought that higher family functioning, maternal report of greater availability of and satisfaction with social support, and fewer child life stress events, would be associated with a lower incidence of behavior problems in the chronic illness sample. Finally, as increases in stressful life events have been previously associated with increases in illness events (e.g., Boyce et al., 1977; Heisel et al., 1973), it was hypothesized that poorer family functioning and a greater number of child life stress events would be associated with an increased number of illness events in the chronic illness sample. METHOD

Participants in this study included 30 mothers of 6- to 14-year-old children with asthma or juvenile diabetes (illness group) and 30 mothers of same-aged children who were free of significant physical illness. Mothers of chronically ill children were contacted through outpatient pediatric clinics of Georgetown University Hospital and Children's Hospital National Medical Center, area chapters of organizations for parents of children with asthma or diabetes, and notices for volunteers in the Health Section of the Washington Post. Mothers of controls were recruited through contacts with parochial schools, well-child clinics of Georgetown University Hospital and Children's National Medical Center, and contacts with parents of similarly aged children with chronic illnesses who had agreed to participate in the study. The latter recruitment method of enlisting controls was used to insure better matching on variables such as socioeconomic status (SES) and race. Inclusion criteria for the children in the chronic illness group were based on the diagnosis of asthma or juvenile diabetes of 1 or more years duration and involvement in a daily regimen for medical management. Children with additional physical or medical handicaps were excluded. Each chronically ill child was individually matched with a same-sex, same-age, well child, and an attempt was made to match groups as closely as possible on SES and race. Approximately 13% of the sample was from ethnic minority backgrounds, including black, Hispanic, and Asian. SES was estimated by the Hollingshead and Redlich (1958) index of social position. The mean SES of 1.55 corresponded to such occupations as administrative or business professionals, teachers, and proprietors of medium-sized businesses. Measures Psychological Adjustment. Psychological adjustment was operationally defined as parental report of behavior problems on a standardized checklist, the


Subjects

38



Child Behavior Checklist (CBCL; Achenbach, 1978, 1979; Achenbach & Edelbrock, 1981). Only the behavior problems portion of the CBCL was used, which is made up of 118 behavior problem items. This instrument demonstrates high test-retest and interparent reliabilities and is a valid discriminator of maladjusted and poorly achieving children (Achenbach & Edelbrock, 1981). The checklist yields a total behavior problem score and two broad-band factor scores, reflecting internalizing and externalizing problem behaviors. In the present sample the items "asthma" and "allergies" were deleted from the total to avoid confounding with the chronic illness variables. As the total problem behavior score represents essentially a composite of the Internalizing and Externalizing subscale scores, results are reported only for the two subscales. Family Functioning. The Family Environment Scale (FES; Moos & Moos, 1981) was administered to assess family functioning of the quality of the home environment. The FES is a standardized and well-validated measure of family members' perceptions of family relationships and family structure. The scale includes 90 items which assess 10 dimensions of the home environment. These 10 subscales are grouped into three conceptual clusters, including (a) 3 subscales describing relationships within the family, (b) 5 subscales pertaining to personal growth and development, and (c) 2 subscales describing aspects of family systems maintenance. Four of these subscales were of interest in the present study: cohesion and conflict (reflecting the quality of family relationships) and organization and control (reflecting the maintenance of family systems). Social Support. Maternal social support, defined as perceived availability and perceived adequacy of close affectional relationships, was examined through the use of an amended form of the Interview Schedule for Social Interactions (ISS1; Henderson, Duncan-Jones, Byme, & Scott, 1980). This amended form, developed by Pellegrini (1983), includes information regarding the availability of confidants and practical support-givers in addition to attachment figures. Henderson et al. (1980) have identified six different dimensions of the original ISSI, but only two dimensions were of interest: (a) the number of affectionally close relationships that are available (AVAT), and (b) the number of available close relationships that are reported to be adequate (ADAT). Child Life Events Stress. The Project Competence Life Events Questionnaire (LEQ; Herzog, Linder, & Samaha, 1981) was administered to assess the level of stress each child experienced over a 12-month period. This scale was modeled on Coddington's (1972a, 1972b) adaptation for children of Holmes and Rahe's (1967) Social Readjustment Rating Scale. The LEQ includes 50 events encompassing changes in the home and school environments of the child. The parent indicates whether each event had happened to their child over the past year by circling "yes" or "no." The scale includes clearly positive and negative events as well as events with mixed (i.e., both desirable and undesirable) features. The Life Events score is a sum of negative and mixed events occurring in the interval of interest (the preceding 12 months in the present study).

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39

Illness Events. Illness status over a 3-month interval was assessed through parental report on checklists of "illness events" (e.g., wheezing, hypoglycemia, ketoacidosis, changes in medication) designed to assess functioning specific to the management of juvenile diabetes or asthma. The checklists were designed with medical professionals who routinely work with these populations. The items ranged from mild events, which may be commonly experienced during the course of a chronic illness, to much more serious events which would require hospitalization or emergency interventions. The score consisted of a simple count of the number of times such events occurred over the preceding 3-month interval.

Participants were seen for the initial interview in the Child Development Center of Georgetown University Hospital, or at their home or workplace if it was inconvenient for them to come to the hospital. Each mother completed a consent form and was told that the purpose of the study was to investigate how families cope with childhood chronic illnesses. During the initial interview, the ISSI social support interview was administered and the mother was asked to complete the FES. Three months later, mothers were contacted and asked to complete the CBCL. They also completed the LEQ to determine the number of child life stressors occurring in the past 12 months. Finally, information was collected regarding the number of illness events that the chronically ill child had experienced over the interim.

RESULTS Sample Description The total sample for the study comprised 30 children in the chronic illness group and 30 children in the control group. The sex distribution for both groups was identical, with 19 boys and 11 girls in each of the two groups. Ages ranged from 6.5 to 14 years. The mean age for the asthmatic children was 9.7 years (SD = 1.1), the mean age for diabetic children was 9.4 years (SD = 2.1), and the mean age for all children in the control group was 9.6 years (.SD = 2). T-score ranges on the Child Behavior Checklist were 35 to 70 (M = 50.35, SD = 9.49) for Internalizing Behavior Problems and 31 to 78 (M = 49.70, SD = 9.76) for Externalizing Behavior Problems. Chi-square analyses confirmed the accuracy of attempts to match the groups on SES, as no association was found between group membership and SES. Given that no differences emerged between the controls and either the asthmatic


Procedure

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Hamlett, Pellegrini, and Katz Table I. Group Means for Family Variables" Asthmatics (1 = 17)

Diabetics (/i = 13)

Controls (" =•• 3 0 )

Variable

M

SD

M

SD

M

SD

F(2, 59)

Family Cohesion Family Conflict Family Organization Family Control Availability of social support Adequacy of social support Child life events stress

7.71 3.12 5.06 4.59 6.35 7.12 b 3.35,

1.10 1.87 2.46 2.35 0.93 2.23 2.31

7.46 3.77 5.77 4.85 6.54 8.31 2.46

1.71 1.74 2.20 1.95 0.77 1.44 1.61

7.40 3.73 5.90 4.53 6.50 8.43, 1.87b

1.88 2.10 2.02 1.76 0.86 1.43 1.38

0.19 0.62 0.83 0.12 0.21 3.44* 3.96*


"Group means significantly different from each other at p < .05 are indicated by subscripts: a > b. b p < .05.

children or the diabetic children, nor between the two illness groups on sex, age, and SES, two illness groups were combined for certain analyses. Group Differences3 To compare perceptions of functioning in families of children with chronic illness relative to families of controls, the scores for the cohesion, conflict, organization, and control subscales of the Family Environment Scale were examined through separate one-way analyses of variance (ANOVAs) for the three groups. As seen in Table I, there were no significant group differences on any of the family functioning variables as assessed by the FES. As Table I demonstrates, differences emerged in maternal perceptions of social support. There were no differences between the groups on maternal perceptions of availability of social support, but there were significant differences between the groups on maternal perceptions of the adequacy of social support. The perceived adequacy of social support reported by mothers of asthmatic children was significantly lower than that reported by mothers of controls, f(45) = 2.41, p < .03. There was also a significant group effect in the report of child life stress events over a 12-month period. Tests of group means demonstrated that mothers of asthmatic children reported more life events than mothers of children in the control group, r(45) = 2.41, p < .03. Separate one-way analyses of variance (ANOVAs) were also performed for 3

The sample size for the groups was limited by attempts to use relatively strict inclusion criteria for the chronic illness groups as well as careful matching of the control group. Due to multiple comparisons made, we urge readers to interpret the results of the group comparisons cautiously.

Chronic Illness

41 Table II. Group Mean T Scores on Behavioral Adjustment" Asthmatics (" = 17)

Diabetics (n = 17)

Controls (n = 30)

Variable

M

SD

M

SD

M

SD

Externalizing behavior problems Internalizing behavior problems

51.06

8.00

51.23

12.77

48.33

9.32

0.61

54.59"

8.49

50.15

9.00

48.03*

9.68

2.75*

f (2, 59)

"Group means significantly different from each other at p < .05 are indicated by subscripts: a > b. b p < .05.

Behavioral Adjustment: Relationships to Chronic Illness and Family Environment It was hypothesized that children's psychological adjustment would be related to child life events stress, family functioning, the availability and adequacy of maternal social support, and chronic illness. Hierarchial multiple regression analyses were performed to clarify the extent to which variability in behavioral adjustment could be accounted for by these variables. (Additional details regarding interrelationships of variables not included in the multiple regression analyses are available from the authors.) Given that externalizing and internalizing behavior patterns appear to have different prognostic implications (Achenbach, 1978; N. J. Cohen, Gottlieb,


each of the 7-scores derived from the CBCL to examine for differences in the children's behavioral adjustment as a function of chronic illness status. As evident in Table II, there were no significant differences between the groups on the T scores for Externalizing behavior problems. However, a trend approaching significance was noted for Internalizing behavior problem T scores. In light of the a priori hypothesis regarding the relationship between childhood chronic illness and behavioral adjustment, this trend was examined more closely. Comparisons between groups revealed that mothers of asthmatic children reported significantly more internalizing behavior problems in their children (M = 54.59), in comparison to mothers of healthy controls (M = 48.03), t = 2.42. However, mean score for both groups on this index fell below that level considered to be of "clinical" significance (i.e., T s 70). The hypothesis regarding the relationship between family functioning, child life stress, and illness events was not examined as there was extreme variability in the measure assessing illness events and it did not prove to be a statistically valid or reliable measure.

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Kershner, & Wehrspann, 1985), separate analyses were undertaken for each behavioral index. J. Cohen and Cohen (1983) have outlined the strategic advantage of multiple regression as a general method of data analysis, especially for clarifying the complex relationships implicit to correlational data. The hierarchical model, in particular, allows for specification of the unique contribution that each independent variable makes in accounting for the variance in a dependent variable when included as a separate step in the analysis. A mixed-model approach containing hierarchical and stepwise approaches was used for the present study. The rationale for the order of entry of the variables into the regression analyses was as follows. Dummy variables representing the presence of asthma and diabetes were the first independent variables entered into the regression equation, as Steps 1 and 2, respectively. These variables represent fixed effects, because no other variable influences them, and they were of primary interest in relation to behavioral adjustment. The set of family functioning variables (Cohesion, Conflict, Control, and Organization) were entered next, as Step 3. The specific order of entry of these variables was allowed to vary within the set, depending upon the relative contribution to each dependent variable. The two maternal social support scores (availability and adequacy of extrafamilial social support) were entered as a set into the analyses, as Step 4. This allowed for evaluation of the unique contribution of personal resources outside of the family. The specific order to entry of these two variables also varied with each dependent variable, depending upon the magnitude of the increments that each provided. Finally, SES and Life Events were entered last (i.e., as Steps 5 and 6) in order to examine the unique effects of these environmental factors. Results of the final regression analyses are summarized in Table III. Each column reflects the regression of a behavioral adjustment variable on the 10 independent variables. For each step, the increment in R2 is provided, along with the significance of the increment. As seen in Table 111, notable differences emerged both within and among the psychological adjustment domains with regard to the explanatory power of family functioning, chronic illness, and maternal social support. The diagnosis of a chronic illness, family functioning, maternal social support, and environmental factors explained about 32% of the variance in Internalizing behavior problem scores and Externalizing behavior problem scores. Some variability was evident with regard to the most effective predictors across the two measures of psychological adjustment. When considered as a set, the family functioning variables provided a significant increment in R2 for Externalizing behavior. Family Cohesion and Family Conflict emerged as significant predictors of Externalizing behavior, together explaining approximately 19% of the variance. The set of maternal social support variables provided a significant increment in R2 for Internalizing behavior. The diagnosis of asthma and per-

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43

Table III. Hierarchial Multiple Regression Analysis of Psychological Adjustment Variables" Step & independent variables

Total« 2

.007 .013

.080* .008

.063* (2) 125' (1) .005 (4) .024 (3)

018(2) 008 (3) 008 (4) 039(1)

017(1) .010(2) .039 .011

002 (2) 091* (I) .034 .034

315*

.321*

"Family environment and extrafamilial social support variables were entered as "sets" in Steps 3 and 4, respectively, with the order of entry for variables within each set determined in stepwise fashion. The increment in R2 provided by each set or variable is indicated separately for each dependent variable, along with the significance of the increment (F test). The exact step at which a given variable within a set was entered is indicated in parentheses. b p < .05. c p < .01.

ceived adequacy of social support were significant predictors of Internalizing behavior, accounting for 17% of the variance.

DISCUSSION The findings of the present study provide modest though consistent support for the relative contributions of childhood chronic illness and family functioning to maternal perceptions of childhood behavioral adjustment. In addition, there were unique and specific patterns of association between characteristics of family functioning and chronic illness status for the domains of internalizing and externalizing behavior problems. There was a significant relationship between family cohesion, family conflict, and externalizing behaviors in the present sample. This relationship between family conflict and childhood behavior problems is one identified previously by Porter and O'Leary (1980) and Emery and O'Leary (1982) in their investigations of marital discord and the incidence of conduct problems in children. A modeling hypothesis has been proposed to account for this relationship,


1. Chronic illness: Asthma 2. Chronic illness: Diabetes 3. Family environment Cohesion Conflict Control Organization 4. Maternal Social Support Availability Adequacy 5. SES 6. Child Life Stress Events

R2-change for dependent variables — — ^ — ^ ^ — — ^ _ — Externalizing behavior Internalizing behavior

44



proposing that the discord provides a model of verbal and physical aggression for the child which he or she may then follow. The present study also demonstrated a significant relationship between increased internalizing behaviors, asthma, and maternal report of less adequate social support. This finding supports previous studies which have reported a greater incidence of internalizing, anxious behaviors in chronic illness or medically handicapped populations (Thompson, 1985; Thompson et al., 1990; Wallander et al., 1988). While levels and patterns of behavior problems were not in the clinical range, or sufficient to make up symptom clusters necessary for psychological diagnostic categories, they may be interpreted as reflecting problems of adaptation or adjustment. These findings are consistent with an interpretation of childhood chronic illness as a chronic stressor that may affect, or even potentially disrupt, mastery of normal developmental tasks of childhood as well the balance of relationships within family systems. A stress and coping model underscores the importance of empirically identifying individual competencies or resiliencies of the child and protective characteristics or family resources which buffer the effects of this chronic stressor. The results of our study failed to demonstrate any differences in family functioning between the families of children with chronically ill children and those of healthy, same-age children, supporting previously held clinical impressions that many of these families are functioning well as they cope with the demands of their child's illness. Much attention has been focused on the somewhat broadly defined variable of family functioning and its contribution in moderating or potentiating the impact of childhood (Lewis & Khaw, 1982; Pless et al., 1972; Satterwhite, 1978; Steinhausen, Schindler, & Stephan, 1983). However, there has been a relative scarcity of attention to any model of effect examining microsocial variables which make up family routines and interactions and their relative contributions in the research literature. Patterson (1982) described the importance of examining cumulative effects of hassles and crises on interactions within family networks. He pointed out that while effects may often be transient, under certain circumstances transient shifts in interactions may contribute to more permanent alterations in relationships. Emery (1982) stated that the impact of crises such as marital or family conflict on the behavioral adjustment of the child may be seen in its potentially disruptive effect on important family routines, such as disciplinary and childrearing practices. This model may be a particularly relevant one for chronic illness populations when considering the varying degrees of change in family routines associated with illness events, daily medical regimens, and emergency room visits and/or hospitalizations. The present study was unique in its examination of the relative importance of a qualitative aspect of social support, satisfaction with or perceived adequacy

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45


of social support. Previous studies have examined the significance of network size and density in the social support of families of chronically ill children (Kazak, 1989; Kazak et al., 1988). The relationship between having a child with asthma, maternal report of less adequate social support, and an increased of internalizing childhood behavior problems highlights the need to consider the unique significance of social support to the mother of a chronically ill child. One explanation of this relationship may be the practical solution that the mother of a child with asthma may need more support because of the demands associated with her child's illness. The parent who must make periodic trips to the doctor's office or emergency room may need to rely more on others for instrumental support (e.g., baby-sitting with other children, assisting with responsibilities at work) as well as emotional support. As these needs increase, the likelihood that these needs may sometimes not be met also increases. Indeed, it may be that the adequacy of one's social support cannot be accurately assessed until crises act to test the limits of these supports. The role of social support as a family resource was discussed earlier as it contributes to the day-to-day routines and practices of young parents in providing practical information about child-rearing practices and social and cognitive stimulation to the child (Cochran & Brassard, 1979). In this role, extrafamilial social support functioned in much the same way that the extended family traditionally did, with young parents learning the task of parenting. Similarly, support in the form of affectionally close relationships with other parents of chronically ill children may serve a special role with parents who are learning to cope with their child's chronic illness as well. Future investigations of the instrumental and emotional components that characterize adequate social support, as viewed by parents of chronically ill children, might better identify the unique functions of social support with regards to this population's needs. There are methodological limitations of the present study which should be carefully considered in the interpretation of its findings. First, the chronic illness sample was relatively small due to carefully defined criteria and screening of children with other medical or mental handicaps. The small number of children in the diabetic group may not have allowed for the detection of any differences from healthy, same-age controls on variables such as internalizing behaviors. An alternate hypothesis for the relationship between internalizing behaviors and asthma may be drawn from previous investigations which have suggested an anxiety component inherent to the physiological presentation of asthma (Creer, Marion, & Creer, 1983; Fritz, 1983). In addition, the poor reliability of the illness events checklist prevented examination of the hypothesis that poorer family functioning and a greater number of child life stress events would be associated with an increased number of illness events in the chronic illness sample. The results of our study suggest that the resources available to the family,

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such as social support and competencies of individual family members, should be considered for their contribution to the task of coping with childhood chronic illness. It is likely that these factors may help to distinguish those families who successfully weather the crises and changes associated with their child's illness and those who are less adaptive in coping with this stressor. The impact of childhood chronic illness may be viewed as less of a static effect than a process that may interact with the unique characteristics of the child and his or her family. Ultimately, the family acts as a recipient of the stresses associated with the child's illness and has the greatest impact on the psychological adjustment and outcome of the child. Downloaded from http://jpepsy.oxfordjournals.org/ at Monash University on June 3, 2015

REFERENCES Achenbach, T. M. (1978). The Child Behavior Profile: 1. Boys 6-11. Journal of the Consulting and Clinical Psychology, 46, 478-488. Achenbach, T. M. (1979). The Child Behavior Profile: An empirically based system for assessing children's behavioral problems and competencies. International Journal of Mental Health, 7, 24-42. Achenbach, T. M., & Edelbrock, C. S. (1981). Behavioral problems and competencies reported by parents of normal and disturbed children aged 4 through 16. Monographs of the Society for Research in Child Development, 46(1, Serial No. 188). Boyce, T. W., Jensen, E. W., Cassell, J. C , Collier, A. M., Smith, A. A., & Raimey, C. T. (1977). Influence of life events and family routines on childhood respiratory tract disease. Pediatrics, 60. 609-615. Cochran, M. M., & Brassard, J. A. (1979). Child development and social networks. Child Development. 50, 601-616. Coddington, R. D. (1972a). The significance of life events as etiologic factors in the disease of children. I: A survey of professional workers. Journal of Psychosomatic Research. 16, 7-18. Coddington, R. D. (1972b). The significance of life events as etiologic factors in the diseases of children. II: A study of a normal population. Journal of Psychosomatic Research, 16, 205-213. Cohen, J., & Cohen, P. (1983). Applied multiple regression: Correlational analysis for the behavioral sciences (2nd ed.). Hillsdale, NJ: Erlbaum. Cohen, N. J., Gottleib, H., Kershner, J., & Wehrspann, W. (1985). Concurrent validity of the Internalizing and Externalizing profile patterns of the Achenbach Behavior Checklist. Journal of Consulting and Clinical Psychology, 53. 724-728. Creer, T. L., Marion, R. J., & Creer, P. P. (1983). Asthma problem behavior checklist: Parental perceptions of the behavior of asthmatic children. Journal of Asthma, 20. 97-104. Drotar, D. (1981). Psychological perspectives in chronic childhood illness. Journal of Pediatric Psychology, 6. 211-228. Emery, R. E. (1982). Imerparental conflict and the children of discord and divorce. Psychological Bulletin, 92, 310-330. Emery, R. E., & O'Leary, K. D. (1982). Children's perceptions of marital discord and behavior problems of boys and girls. Journal of Abnormal Child Psychology, 10, 11-24. Fritz, G. K. (1983). Childhood asthma. Psychosomatics, 24. 959-967. Graham, P., Rutter, M. L., Yule, W., & Pless, 1. B. (1967). Childhood asthma: A psychosomatic disorder? Some epidemiological considerations. British Journal of Prevention and Social Medicine. 21, 78-85. Heisel, J. S.,Ream, S., Raitz, R., Rappaport, M., & Coddington, R. D. (1973). The significance of life events as contributing factors in the disease of children. Behavioral Pediatrics, 83. 119-123.

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Henderson, S., Duncan-Jones, P., Byrne, D. G., & Scott, R. (1980). Measuring social relationships: The interview schedule for social interaction. Psychological Medicine, 10, 732-734. Herzog, J., Linder, J., & Samaha, J. (1981). The measurement of stress: Life events and the interviewers' ratings (Project Competence Technical Report No. 1). Unpublished manuscript, University of Minnesota. Hollingshead, A., & Redlich, F. (1958). Social class and mental illness. New York: Wiley. Holmes, T. H., & Rahe, R. H. (1967). The social readjustment rating scale. Journal of Psychosomatic Medicine, 11, 213-218. Johnson, J. T. (1982). Life events as stressors in childhood and adolescence. In B. B. Lahey & A. E. Kazdin (Eds.), Advances in clinical psychology (vol. 5, pp. 219-253). New York: Plenum Press. Johnson, S. B. (1985). The family and the child with chronic illness. In D C. Turk & R. D. Kems (Eds.), Health, illness, and families: A lifespan perspective (pp. 220-254). New York: Wiley. Kazak, A. E. (1989). Families of chronically ill children: A system and social-ecological model of adaptation and challenge. Journal of Consulting and Clinical Psychology, 57, 25-30. Kazak, A. E., Reber, M., & Carter, A. (1988). Structural and qualitative aspects of social networks in families with young chronically ill children. Journal of Pediatric Research, 13, 171-182. Lewis, B., & Khaw, K. (1982). Family functioning as a medicating variable affecting psychosocial adjustment of cystic fibrosis. Journal of Pediatrics, 101, 636-640. Masters, J., Cerreto, M., & Mendlowitz, D. M. (1983). The role of the family in coping with childhood chronic illness. In T. Burish & L. Bradley (Eds.), Coping with chronic illness: Research and Applications (pp. 381-407). New York: Academic Press. Moos, R. H., & Moos, B. S. (1981). Family Environment Scale. New York: Consulting Psychologists Press Patterson, G. R. (1983). Stress: A change agent for family process. In N Garmezy and M. Rutter (Eds), Stress, coping, and development in children (pp. 235-264). New York: McGraw-Hill Book Company. Pellegrini, D. (1983). The Interview Schedule for Social Interaction—Modified. Unpublished manuscript, Catholic University of America. Pless, I. B., Roghmann, K. J., & Haggerty, R. J. (1972). Chronic illness, family functioning, and psychosocial adjustment: A model for the allocation of preventive mental health services. International Journal of Epidemiology, 1, 271-277. Porter, B., & O'Leary, D. K. (1980). Marital discord and childhood behavior problems. Journal of Abnormal Child Psychology. 8, 287-295. Satterwhite, B. S. (1978). Impact of chronic illness on child and family: An overview based on five survey with implications for management. International Journal of Rehabilitation Research, I, 7-17. Steinhausen, H. C , Schindler, H. P., & Stephan, H. (1983). Correlates of psychopathology in sick children: An empirical model. Journal of the American Academv of Child Psychiatry, 22, 559-564. Tavormina, J. B., Kastner, L. S., Slater, P. M., & Watt, S. L. (1976). Chronically ill children: A psychologically and emotionally deviant population? Journal of Abnormal Child Psychology. 4, 99-110. Thompson, R. J. (1985). Delineation of children's behavior problems: A basis for assessment and intervention. Journal of Developmental and Behavioral Pediatrics, 6, 37-50. Thompson, R. J., Jr., Hodges, K., & Hamlett, K. W. (1990). A matched comparison of adjustment in children with cystic fibrosis and psychiatrically referred and nonreferred children. Journal of Pediatric Psychology, 15, 745-759. Venters, M. (1981). Familial coping with chronic and severe childhood illness: The case of cystic fibrosis. Social Science and Medicine. 15, 289-297. Wahler, R. G. (1980). The insular mother: Her problems in parent-child treatment. Journal of Applied Behavior Analysis, 13, 207-219. Wallander, J. L., Vami, J. W., Babani, L , Banis, H. T , & Wilcox, K. T. (1988). Children with chronic physical disorders: Maternal reports of their psychological adjustment. Journal of Pediatric Psychology. 13, 197-212.

Serious physical illness as a stressor: effects on family use of medical services.

Mental Illness in Children: Childhood Illness and Supporting the Family.

Childhood chronic illness: prevalence, severity, and impact.

Effects of childhood chronic illness on families.

Family Functioning as a Constituent Aspect of a Child's Chronic Illness.

A framework for family assessment in chronic illness.

Chinese family management of chronic childhood conditions: a cluster analysis.

Systematic review of character development and childhood chronic illness.

Psychosocial well-being in young adults with chronic illness since childhood: the role of illness cognitions.

Confidence as a factor in chronic illness care.

Families living with chronic illness: beliefs about illness, family, and health care.

Family carers: A role in addressing chronic disease risk behaviours for people with a mental illness?

A Cost-Benefit Analysis of a Family Systems Intervention for Managing Pediatric Chronic Illness.

Parenting interventions for childhood chronic illness: a review and recommendations for intervention design and delivery.

Evolving illness, shifting perspectives: childhood psychosis through the lenses of family therapy and individual therapy.

Evaluation of a family systems intervention for managing pediatric chronic illness: Mastering Each New Direction (MEND).

Delimiting family in syntheses of research on childhood chronic conditions and family life.

The Chronic Illness Problem Inventory as a measure of dysfunction in chronic pain patients.

Sleep disturbance as a stressor event in elderly's life.

Lupus myopericarditis as a preceding stressor for takotsubo cardiomyopathy.

Health Vlogs as Social Support for Chronic Illness Management.

Physical illness and the family emotional system: psoriasis as a model.

The Illness Beliefs Model: advancing practice knowledge about illness beliefs, family healing, and family interventions.

Chronic cough in young adults in relation to smoking habits, childhood environment and chest illness.