Illness Factors and Child Behavior Before and During Pediatric Hospitalization

Transcription

1 Illness Factors and Child Behavior Before and During Pediatric Hospitalization William G. Kronenberger 1, Bryan D. Carter 2, Valerie M. Crabtree 2, Laurie M. Grimes 2, Courtney Smith 2, Janet Baker 2, and Kelly McGraw 2 1 Indiana University School of Medicine and 2 University of Louisville School of Medicine

2 Abstract Most research on children s adjustment to severe physical illnesses and conditions has focused on behavior out of the hospital setting. However, adjustment and behavior in the hospital is also important for quality of life,adherence, and long-term adjustment. Relatively little is known about factors predicting adjustment in the hospital setting or about the correspondence between risk/protective factors for in-hospital behavior vs. out of hospital behavior. This study is an investigation of the relationship between two types of illness characteristics (chronic/acute and life-threatening/non-life-threatening) and child behavioral adjustment in and out of the hospital. Parents and nurses of 89 children hospitalized in a tertiary-care pediatric hospital completed questionnaires about the child s in-hospital and out-of-hospital behavior. During hospitalization, children with acute conditions showed more internalizing behavior, whereas prior to hospitalization, children with chronic illnesses showed more internalizing behavior. Additionally, severity (life-threatening/non-life-threatening) of illness was strongly related to internalizing behavior in the hospital but unrelated to internalizing behavior prior to hospitalization. An interaction effect was found between illness chronicity and severity, such that the relationship between having a life-threatening illness and internalizing behavior in the hospital was greater for children with acute illnesses. Externalizing behavior (whether prior to or during hospitalization) was unrelated to illness severity or chronicity. The results suggest that different illness factors may predict behavioral adjustment in the hospital as compared to out of the hospital.

3 Introduction Chronic and/or severe physical illness in childhood is associated with outcomes ranging from adjustment problems to resilience. Theories explaining this variability in outcome emphasize that the initial impact of illness stress is moderated, ameliorated, and/or exacerbated by psychosocial factors including cognitive appraisal, environmental resources, family relationships, other stresses, and coping behaviors (Kazak, 1986; Thompson & Gustafson, 1996; Quittner, DiGirolamo, Michel, & Eigen, 1992; Wallander, Varni, Babani, Banis, & Wilcox, 1989). These psychosocial factors tend to be better predictors of child adjustment than illness factors such as type and severity (Thompson & Gustafson, 1996). However, most of the existing research on the relationship between illness factors and child behavior has emphasized child behavior out of the hospital setting. Far less is known about illness factors and child behavior within the hospital setting. Illness factors may have a greater impact on in-hospital behavior because the illness is often more severe and is more of a focus during hospitalization. Objective measures of illness severity, for example, are usually not related to out-of-hospital adjustment, but illness severity may be more of a factor in the hospital, when severity is more likely to relate to intensity of treatment and level of concern for the child s well-being. Additionally, children with chronic physical conditions (that require frequent hospital visits) may be more familiar with the hospital setting than those with new-onset or acute conditions, and their in-hospital behavior may reflect this familiarity (e.g., by showing less adjustment-related anxiety). This study is an investigation of the relationship between illness factors (such as severity and chronicity) and child behavior in and out of the hospital setting.

4 Participants Participants were 89 families of children (54 male, 35 female; mean age=12.2 years, SD=3.7) age 4 to 18 who were hospitalized in a tertiary care pediatric hospital. Potential participants for the study were identified from daily hospital census lists to match a companion sample for another study (Carter et al., 2003); families who had been referred for psychological consultation were excluded from this study. Children had a range of physical conditions: cancer (N=17), asthma (N=11), accidents/breaks (N=10), diabetes (N=9), renal conditions (N=7), neurological disorders (N=4), gastrointestinal disorders (N=4), cystic fibrosis (N=3), cardiac disease (N=2), hematological disorders (N=3), other pulmonary disorders (N=2), head/spinal injury (N=2), and other disorders (N=15). Illness types were coded along two parameters based on categories developed by Carter et al. (2003): chronic vs. acute (duration/onset factor) and non-life-threatening vs. life-threatening (severity factor). Illnesses were coded as acute if they had recent and sudden onset (accidents, acute infections) or chronic if they involved recurrent/persistent symptoms or a lifelong condition (asthma, cancer, diabetes, recurrent headache). Illnesses were coded as life-threatening if they were severe at the time of the hospitalization (severe burns, status asthmaticus) and/or if they involved a significant risk of mortality during or prior to early adulthood (cystic fibrosis). Based on this coding, 38 participants were categorized as having chronic, life-threatening conditions; 9 had acute, life-threatening conditions; 21 had chronic, non-life-threatening conditions, and 21 had acute, non-lifethreatening conditions.

5 Procedure and Measures Procedure. Families were approached during the child s hospitalization and invited to participate in a study of children s illness and behavior. Those consenting to participate were given a packet of questionnaires about child behavior, adjustment, and illness beliefs. One of the child s primary nurses completed a rating scale about the child s behavior in the hospital. Information about illness factors was obtained from chart review. Measures. The Pediatric Inpatient Behavior Scale (PIBS; Kronenberger, Carter, & Thomas, 1997) is a 47-item nurse-completed measure of child behavior in the hospital. PIBS items yield 10 factoranalytically derived subscales, but only 5 PIBS behavior problem subscales contain more than three items. A higher-order factor analysis of these 5 subscales in the present sample produced two factors (with eigenvalue > 1; the two-factor solution was also supported by scree plots), which were labeled Externalizing (Oppositional-Noncompliant and Conduct Problem subscales) and Internalizing (Distress and Anxiety subscales). The Withdrawal subscale failed to load significantly (loading > 0.50) on either factor and was dropped from analysis. PIBS Externalizing and Internalizing scores (derived by adding the raw scores of the component subscales) were used in the present study as measures of in-hospital behavior. The Child Behavior Checklist (CBCL; Achenbach, 1991) is a 118-item, parent-report measure of child behavior during the past 6 months. CBCL items yield 8 behavior problem subscales and two second-order scales. The second-order CBCL scales (Internalizing and Externalizing) were used in the present study as measures of out-of-hospital behavior. Because of the possible confound between somatic complaints and physical illness, the CBCL Somatic Complaints scale was not included in the CBCL Internalizing score, and the second-order CBCL scale scores were derived by summing T- scores of the constituent subscales.

6 Results Data Analysis. Separate 2 (chronic vs. acute) x 2 (life-threatening vs. non-life-threatening) ANOVAs were conducted for the in-hospital (PIBS) and out-of-hospital (CBCL) behavior questionnaires in order to investigate differences in children s behavior by illness characteristics. ANCOVAs covarying age produced similar results and are not reported here. All F values reported in the Results have (1,85) df. Behavior in the Hospital. For the PIBS Externalizing score, neither main effect (F= 0.07 and 0.01, for chronic-acute and life/non-life-threatening, respectively) nor the interaction effect (F=0.53) was statistically significant. However, both main effects (F=11.78 [p<0.001] and 7.27 [p<0.01], respectively) and the interaction effect (F=4.98, p<0.05) were significant for the PIBS Internalizing score. Children with acute illness showed more internalizing behaviors in the hospital, compared to children with chronic illnesses, and children with lifethreatening illnesses showed more internalizing symptoms in the hospital, compared to children with non-life-threatening illnesses. However, the relationship between having a life-threatening illness and internalizing behavior was much stronger if the illness was acute than if it was chronic (Figure 1). Behavior At Home. Neither main effect (F=3.06 and 0.38, for chronic-acute and life/nonlife-threatening, respectively) nor the interaction effect (F=1.68) was statistically significant for the CBCL Externalizing score. Children with chronic illnesses had significantly higher CBCL Internalizing scores than those with acute illnesses (F=5.57, p<0.05), but no differences were found for life-threatening illness (F=0.29) or the interaction effect (F=1.94)(Figure 2).

7 Discussion Study results indicate that illness characteristics relate differently to children s behavior prior to and during hospitalization. During hospitalization, children with acute conditions showed more internalizing behavior, whereas prior to hospitalization, children with chronic illnesses showed more internalizing behavior. Additionally, severity (life-threatening/non-life-threatening) of illness was strongly related to internalizing behavior in the hospital but unrelated to internalizing behavior prior to hospitalization. Externalizing behavior (whether prior to or during hospitalization) was unrelated to illness severity or chronicity. Consistent with hypotheses, children with more life-threatening, recently-diagnosed illnesses were more anxious and distressed in the hospital. These children are less likely to be familiar with the hospital environment, and they are more likely to be exposed to treatments that are more intensive and/or necessary for survival. Furthermore, they may be more prone to worry about the life-threatening implications of their illnesses, or they may reflect the fears of their caretakers. The interaction effect between illness chronicity and severity suggests that the relationship between having a life-threatening illness and internalizing behavior was greater for children with acute illnesses. Children with acute, life-threatening illnesses are more likely to be at an earlier stage of adjustment to a traumatic stressor, which may account for a higher degree of intrusive distress, consistent with theories of posttraumatic stress disorder (Horowitz, 1986). The relationship between illness chronicity and internalizing behavior was reversed for prehospital behavior, with chronic illness related to more internalizing behavior. Perhaps the most parsimonious explanation for this finding is that children with acute illnesses were (by definition) ill for only a very brief period of time prior to hospitalization, and their pre-hospitalization behavior therefore reflected the absence of the illness. Hence, the comparison of acute vs. chronic illness for pre-hospital behavior was actually a comparison of chronic illnesses with no illness. Prior research has also shown greater internalizing behavior (out of the hospital) in samples of children with chronic illnesses relative to healthy samples, especially for neurological conditions (Thompson & Gustafson, 1996).

8 Unlike internalizing behavior, externalizing behavior was unrelated to illness chronicity or severity, both in and out of the hospital. This finding is consistent with research generally showing elevated levels of internalizing (and not externalizing) behavior in children with chronic physical illnesses (Thompson & Gustafson, 1996). Anxiety and distress appear to be more common behaviors (than aggression and rule-breaking) associated with illness severity, perhaps because these tend to be more characteristic of stress-response syndromes and posttraumatic stress. The results of this study must be understood in the context of several methodological characteristics and limitations. First, different respondents were used to evaluate pre-hospital (parentreport) and in-hospital (nurse-report) behavior. Hence, it is possible that the results reflect differences in the respondent perception of child behavior. Second, observer-report of internalizing behavior is based only on observable manifestations of anxiety and distress; it is possible that self-report would yield additional information about internal emotional states that are not shown in observable external behavior. Third, the categorization of illnesses as chronic/acute and life-threatening/non-life-threatening describes only two of many illness parameters, and indices of illness severity might be much more specific and objective if only one illness condition were studied. Thus, these results do not necessarily apply to illness characteristics (such as severity) within the same illness condition. Nevertheless, these study results illuminate an important difference between child behavior and child adjustment in and out of the hospital. Factors predicting adjustment at home may not predict child adjustment in the hospital, and therefore research based on outpatient and home settings should be very cautiously applied to acute illness and in-hospital situations. Increased attention to in-hospital behavior and inpatient consultation-liaison settings (Carter et al., 2003) is necessary to better understand factors predicting child adjustment during hospitalization, with the ultimate goal of identifying risk factors, protective factors, and targets for intervention.

9 References Achenbach, T.M. (1991). Manual for the Child Behavior Checklist/4-18 and 1991 profile. Burlington, VT: University of Vermont Department of Psychiatry. Carter, B.D., Kronenberger, W.G., Baker, J., Grimes, L., Crabtree, V.M., Smith, C., & McGraw, K. (2003). Inpatient pediatric consultation-liaison: A case-controlled study. Journal of Pediatric Psychology, 28, Horowitz, M.J. (1986). Stress response syndromes. New York: Jason Aronson. Kazak, A. (1986). Families with physically handicapped children: Social ecology and family systems. Family Process, 25, Kronenberger, W.G., Carter, B.D., & Thomas, D. (1997). Assessment of behavior problems in pediatric inpatient settings: Development of the Pediatric Inpatient Behavior Scale. Children s Health Care, 26, Quittner, A.L., DiGirolamo, A.M., Michel, M., & Eigen, H. (1992). Parental response to cystic fibrosis: A contextual analysis of the diagnostic phase. Journal of Pediatric Psychology, 17, Thompson, R.J., Jr., & Gustafson, K.E. (1996). Adaptation to chronic childhood illness. Washington, DC: American Psychological Association. Wallander, J.L., Varni, J.W., Babani, L., Banis, H.T., & Wilcox, K.T. (1989). Family resources as resistance factors for psychological maladjustment in chronically ill and handicapped children. Journal of Pediatric Psychology, 14,

10 Figure 1: Illness Characteristics and Internalizing Behavior in the Hospital PIBS Internalizing Score Non-Life-Threatening Life-Threatening Acute Chronic

11 Figure 2: Illness Characteristics and Internalizing Behavior at Home CBCL Internalizing Score Non-Life-Threatening Life-Threatening Acute Chronic