Psychosocial Adjustment of Children with a Terminally III Parent KAROLYNN SIEGEL, Ph.D., FRANCES PALAMARA MESAGNO, Ph.D., DANIEL KARUS, M.S., GRACE CHRIST, C.S.W., KAREL BANKS, Ph.D., AND ROSEMARY MOYNIHAN, C.S.W.
Abstract. Although a substantial number of children experience serious parental illness and death, the adjustment problems attendant to the stress of having a fatally ill parent have not been examined systematically. This paper compares the psychosocial adjustment of 62 school-aged children with a terminally ill parent (study sample) with that of children in a community sample, using several standard rating scales. Study children had significantly higher levels of self-reported depression (Children's Depression Inventory) and anxiety (State-Trait Anxiety Inventory) and lower self-esteem (Self-Esteem Inventory). Parents also reported study children's significantly higher behavior problems and lower social competence (Child Behavior Checklist). Increased professional attention to this vulnerable population is encouraged. J. Am. Acad. Child Adolesc. Psychiatry, 1992, 31, 2:327-333. Key Words: anticipatory grief, parental illness, parental death, childhood loss. Increasingly, professional attention is being focused on children's psychological adjustment to stressful life events (e.g., Garrnezy, 1983), including parental death (see generally Berlinsky and Biller, 1982; Krupnick, 1984). A large clinical and empirical literature has explored the consequences of parental death in childhood, particularly its association with adult depression. Yet, as underscored by a number of reviewers, abundant methodological shortcomings challenge the validity of the empirical research and may account, in large part, for the conflicting conclusions regarding the impact of this event. For example, whereas one comprehensive review has concluded that "the childhood loss of a parent by death generally increases depressive risk by a factor of about 2 or 3" (Lloyd, 1980), others have contended that' 'parental death in childhood appears to have little effect on adult depressive morbidity" (Crook and Eliot, 1980; Tennant et aI., 1980). Certain more recent work has attempted to address the limitations of past research, to entertain more complex conceptual models leading from· parental death to psychological symptomatology, and to examine the types of psychosocial adjustment beyond depressive symptomatology, notably anxiety disorders; however, both positive and negative findings persist regarding the impact of the loss of a parent on subsequent adjustment. On balance, nonetheless, there remains a considerable clini-
Accepted July 9, 1991. Karolynn Siegel, Frances Mesagno, Daniel Karus, and Karel Banks are at Memorial Sloan-Kettering Cancer Center, New York, NY. Grace Christ is in private practice, and Rosemary Moynihan is with the School of Social Work, New York University. The authors thank Margaret Babbott, Marilyn Newman, Helen Gonzalez, Emestine Briggs, Annette Schwartz, Mary Baldwin, Francesca Canin, Joanne DeRosa, Leslie Gibson, Shelley Hooe, Anita Lapof, Vanessa Lodico, Elizabeth Pike, Lauren Saler, Shera Spar, and Ilana Tolpin for their assistance on this project. This work was supported in part by grants from the National Institute of Mental Health (MH41967), the American Cancer Society (PRB-24A), the van Amerigen Foundation, and the Society of Memorial Sloan-Kettering Cancer Center. Reprint requests to Dr. Karolynn Siegel, Memorial Sloan-Kettering Cancer Center, 410 E. 62nd St. No. 745, New York, NY 10021. 0890-8567/92/3002-0327$03.00/0© 1992 by the American Academy of Child and Adolescent Psychiatry. J. Am. Acad. Child Adolesc. Psychiatry, 31:2, March 1992
cal and empirical basis for inferring that the death of a parent during childhood places an individual at increased risk for social impairment and/or psychopathology both concurrently (e.g., Elizur and Kaffman, 1982; Gray, 1987; Kranzler et aI., 1990; Van Eederwegh et aI., 1982) and in adulthood (e.g., Brown et aI., 1986; Finkelstein, 1988; Tweed et aI., 1989). As evidence has accumulated suggesting that bereaved children constitute a vulnerable population, clinicians have become increasingly aware that children need support to facilitate their healthy adaptation to parental death. Yet, children's mental health in the period immediately before parental death from chronic illness typically has been overlooked by clinicians, research investigators, and perhaps even by parents. This may be attributed, at least in part, to the focus of professionals and family members on the patient's survival as well as to the persistent belief that children should not be confronted with, and in fact should be sheltered from, issues surrounding serious illness and death. However, children may already be exhibiting high levels of distress in response to the significant life changes accompanying parental terminal illness. They are already experiencing loss from separations because of hospitalizations, increasing limitations in both parents' physical and emotional availability and role functioning, changes in family routines, a shift in the family's emotional climate, and often a decrease in family financial resources as efforts are directed toward prolonging the patient's survival, ensuring adequate caregiving, and reaching difficult decisions regarding the continuation or cessation of treatment. In this respect, terminal illness may be compared with other major events, such as divorce, that involve loss outside of the children's control (Wallerstein, 1986). Like divorce, parental terminal illness involves social network exits and long-term changes. The two situations differ, however, with regard to the emotional climate of the family, which in the case of divorce may include more overt and acknowledged anger and resentment and more clearly defined divided loyalties. Furthermore, the child of a terminally ill parent will eventually suffer the additional trauma of permanent parental loss. Yet, despite children's vulnerability during the terminal stage of a parent's illness, little systematic research has 327
SIEGEL ET AL.
been conducted regarding children's adjustment at this time. Therefore, a compelling reason to describe children's adjustment during this preloss period is to heighten professional and lay sensitivity to children's distress during a parent's fatal illness. A second important reason for investigating the adjustment of children with a terminally ill parent is that this is a necessary first step toward documenting the natural history of children's grief reactions first to impending parental death and then subsequent to the loss. There are no systematic data documenting the nature and intensity of symptomatology typically experienced by children who face the enormous stress of parental terminal illness and eventual death. Thus, there is no empirical basis for judging whether the kinds or levels of distress that might be observed in clinical practice are normal (in the service of coping) or maladaptive. That is, what constitutes' 'normal" as opposed to "complicated" or "pathological" grief reactions in children? The study's objectives, then, are to heighten professional awareness of a vulnerable population of children and provide an empirical basis for evaluating the "normality" or at least the typicality of children's reactions to a parent's impending death by examining reliable and valid data on children's psychosocial adjustment during the terminal stage of their parent's illness. Studying children's responses to stress is particularly problematic because of the complex nature and variability of the symptomatology observed in response to stress. The authors' experience as well as clinical and research reports of children's psychological adjustment to serious parental illness and death suggest that children may respond with internalizing (e.g., depression and anxiety) and/or externalizing (e.g., aggression) behaviors (Adams-Greenly and Moynihan, 1983; Rosenheim and Ichilov, 1979; Van Eerdewegh et aI., 1982; Wellisch, 1979). Similarly, work with children of divorce suggests that both internalizing and externalizing behavior problems are common (e.g., Wallerstein, 1986; Wallerstein and Blakeslee, 1989). Therefore, any examination of children's psychological adjustment to parental terminal illness should consider a broad range of problem behaviors and symptoms. Families of terminally ill cancer patients present a unique opportunity to examine children's responses to imminent parental loss. The course of cancer is usually protracted, and, even when children are not told that their parent's condition is unresponsive to treatment, irreversible, or terminal, our clinical experience suggests that children are generally aware of the severity of illness and the parent's progressive deterioration and increased disability. Even young children generally recognize this declension by such factors as a parent's multiple hospitalizations, weight loss, increased fatigue, and inability to perform previous familial roles. The present study was undertaken to address the paucity of research on children's reactions to parental terminal illness while avoiding certain methodological problems that typically threaten the validity of studies of childhood bereavement, notably restricting samples to children referred for psychological treatment, using extremely small numbers of children and assessing only a limited range of children's 328
affective and behavioral responses to the event. In addition, most studies of children's reactions to stressful life events, particularly parental death, rely on parents' reports of children's psychological status; rarely are children assessed directly. However, parents' reports may be unreliable, particularly of children's affective states. For example, several studies (Doerfler et aI., 1988; Kazdin et aI., 1983; Weissman et al., 1980) have found little relationship between child and parent ratings of depression. Parents' own distress may further compromise their reliability as informants (Brody and Forehand, 1986). Also, parents may be so involved with the day-to-day care of their spouse that they may not recognize more subtle changes in their child's behavior, especially if the child is trying to mask his or her distress in an effort to protect both the ill and well parent. Some evidence of parents' difficulty in perceiving their children's distress during parental terminal illness was found by Rosenheim and Reicher (1986) in a study of 16 families of cancer patients. The correlations between the children's self-reports and reports by their parents on eight items tapping children's fear, restlessness, and subdued mood were small and led the authors to conclude that children with an ill parent find themselves in a "lonely predicament." Therefore, it is critical to obtain reports from both child and parent to fully assess a child's adjustment (Mokros et aI., 1987). In this study, information regarding children's symptomatology was obtained from both children (in selfreports of depressive symptomatology, anxiety, and selfesteem) and parents (in ratings of the children's behavior problems and competencies). Because parents and children provide important, nonoverlapping information, the focus in this paper is not on the correspondence between their ratings, but on the types of problems reported by either parents or children. Method Subjects
This study compares the psychosocial adjustment of children with a terminally ill parent (the study sample) with that of nonreferred children (the community sample). The study sample consists of 62 children, aged 7-16, from the families of 42 patients who were receiving medical treatment for advanced cancer at a comprehensive cancer center in New York City. These families are participants in an ongoing longitudinal study of children's adaptation to parental serious illness and death. Participation is offered to all twoparent, English-speaking families identified at the center in which there are age-eligible children and in which the ill parent is judged by his or her physician to have an expected survival time of approximately 4 to 6 months. The data on children's symptomatology reported below were collected during (or, in the case of the CBCLs, very shortly after) the first research interview with the family, which was conducted at entry into the study during the parent's terminal illness. Potential racial or ethnic differences in adjustment deserve investigation and will be the focus of future research reports as the number of minority families increases. At the J. Am. Acad. Child Adolesc. Psychiatry, 31:2, March 1992
ADJUSTMENT TO PARENTAL TERMINAL ILLNESS
1. Characteristics of the Study Sample-Unweighted (Child
TABLE
is the Unit of Analysis) and Weighted (Family is the
Unit of Analysis)
Sex Male Female Age (years)
7-9 10-11
12-13 14-16 Mean (SD) Religion Catholic Jewish Protestant Other Sex of ill parent Male Female
% Unweighted (N = 62)
% Weighted (N = 42)
45 55
43 57
39 16 16 29
39 17 11
(2.9)
33 11.2 (3.0)
50 27 21 2
50 26 21 2
11.1
60 40
current time, however, only five such families are among the study sample, precluding group comparisons. Therefore, to increase the sample's racial or ethnic homogeneity, the analyses presented below include only children whose parents are both white. A second restriction on the sample was also imposed. Despite the physician's estimate of survival time, patients in the study often survive significantly longer than 6 months. Therefore, to ensure that, for all children, adjustment was assessed during the parent's actual terminal period, the study sample includes only children in white families in which the parent subsequently died less than 6 months (specifically, 180 days) after the baseline research interview. The study sample is described in Table 1, which presents demographic characteristics using both the child and family as the unit of analysis (i.e., unweighted and weighted, respectively). Weighting by the reciprocal of the number of participating children within each household is used to correct for the disproportionate weight that would otherwise be given to families with multiple children. Without this adjustment, bias is introduced because the scores of children within a family are presumed to be nonindependent. The community sample consisted of students attending elementary, middle, or high school in a public school system in suburban New Jersey. The school system was selected for the comparison sample because its student body is demographically similar to the study sample. For example, community students are predominantly white (85%), and the estimated 1990 median household income in this school district was $63,275 compared to an estimated median household income of $53,736 in the study sample during the year before the ill parent's diagnosis. In the analyses presented here, the group of students from which the matched community sample was composed was restricted to native-born, white children living in two-parent families. J. Am. Acad. Child Adolesc. Psychiatry, 31:2, March 1992
As was the case with the study sample, the unit of analysis was the family, i.e., data were weighted by the reciprocal of the number of children in the family for whom data were available. Furthermore, to ensure that the distribution of families within the community sample was comparable with respect to age, sex, and number of children present in the household, sample data were then weighted on the basis of these variables (age categories: 7-9, 10-11, 12-13, 14-16; children in household categories: 1,2,3,4, or more). A total of 556 students from 434 families were included in the community sample. Measures Depressive symptomatology. Levels of depression in the two samples were assessed with the Children's Depression Inventory (CDI) (Kovacs, 1983), a frequently used, 27-item self-report inventory that measures children's depressive symptoms within the past 2 weeks. Each item consists of three statements, graded in severity, that are assigned values from 0 (not severe) to 2 (severe), providing a potential score range of 0 to 54. In normative studies, about 10% of children within community samples have been found to score at or above 19 on the CDI, one frequently used cutoff for probable clinical depression (Doerfler et aI., 1988; Smucker et aI., 1986). Other investigators have found this cutoff too restrictive and have suggested cutoff scores of 14 to identify children in need of treatment and 11 for those warranting further assessment. In this study, cutoff scores of both 11 and 14 on the total CDI are presented to identify children with potentially clinically significant levels of depressive symptomatology. Anxiety. Children also reported directly on their symptoms of anxiety using the State-Trait Anxiety Inventory (STAIY) (Spielberger et aI., 1983), or, for most children aged 11 and younger, the State-Trait Anxiety Inventory for Children (STAIC) (Spielberger et aI., 1973). Both measures contain 20 items tapping state anxiety ("how you feel right now' '), that is, temporary elevations in anxiety such as those that occur after a stressful event. The measures also contain 20 items assessing anxiety as a personality trait ("how you generally feel"), permitting the identification of children who are prone to generalized anxiety. Both the State and Trait scales of the STAIY contain 4-point items, so that raw scale scores range from 20 to 80, with higher scores indicating greater anxiety. The scales of the STAIC are based on 3-point items, so that raw scale scores range from 20 to 60. Self-esteem. Children reported on their self-esteem, using the 25-item Self-Esteem Inventory-Short Form (SEI) (Coopersmith, 1984). This inventory taps the areas of experience (i.e., social, academic, family, and personal) likely to interact with the self-esteem of children. For each item, children indicate whether the statement is "usually" either "like me" or "unlike me." Items indicating positive self-esteem are scored 4 points each and those indicating negative selfesteem 0 points, resulting in a total raw score range of 0 to 100, with higher scores indicating higher self-esteem. Children within the study sample were administered the measures during a personal interview. Children completed 329
SIEGEL ET AL.
the measures on their own unless their reading skills were inadequate to do so. In any such case, the measures were read aloud to the child. In the community sample, the measures were administered within classrooms by nonschool personnel, without the teacher's presence. The measures were completed by students on their own, except in the third grade classes, in which they were read aloud. In both samples, children received instructions and were given practice items before the actual tests. The amount of missing data for these measures was low. The CDI was calculable for 98.0% of the study and 99.3% of the community children. The comparable figures for STAI-C or Y were 88.7% (study) and 95.5% (community) and for the SEI 95.2% (study) and 89.4% (community). Behavior problems and social competence. Parental reports of children's symptomatology were obtained with the Child Behavior Checklist (CBCL) (Achenbach and Edelbrock, 1983). The CBCL consists of 20 social competence and 118 behavior problem items and is extensively used in studies of adjustment in childhood. Social competence is assessed by parents listing the child's involvement in a variety of activities and groups. Behavior problems are rated by parents on a 3-point scale, indicating whether each behavior problem is "not true" of their child (0), "somewhat or sometimes true" (1), or "very or often true" (2) now or within the past 6 months. The CBCL provides Total Behavior Problem and Total Social Competence scores as well as scores on the following subscales: two broad-band behavior problem syndromes (i.e., internalizing and externalizing); several age-sex specific narrow-band behavior problem syndromes (e.g., depressed, delinquent); and three specific social competence subscales (i.e., activities, school, and social competence). In the study sample, to minimize respondent burden, CBCLs were left with the well (nonpatient) parents after the personal interview; parents were asked to complete the forms within 1 week of the interview and return them by mail to the research office. In the community sample, the CBCLs were sent to the mothers, and they returned them by mail. CBCLs were available for 64.5% of the children in the study sample. The response rate in the community sample was lower than that in the study sample, with CBCLs returned for 40.3% of the students who completed the selfreport measures. Software available from the developers of the CBCL was used to compute T-scores from the raw CBCL data, with higher scores on the behavior problem scales and lower scores on the competence scales indicating poorer adjustment. T-scores on the narrow-band syndromes were computed for four age-sex subgroups (boys and girls, aged 6-11 and 12-16). Because the factor structure of the narrowband scales differs between these age-sex groups, mean differences between the study and community samples were not examined for the narrow-band syndromes. Extensive normative studies have been conducted for both clinical and community samples of children (Achenbach and Edelbrock, 1981; 1983). The normative cutoffs provided by Achenbach and Edelbrock were used to determine the proportion of children in the study and community samples 330
whose scores on the CBCL subscales indicated clinically significant levels of behavior problems or social competence. Analyses Mean group differences on the cm, the STAI State and Trait Scales, the SEI, and the CBCL Behavior Problem and Competence scores were examined using one-tailed T-tests. The two samples were also compared (using chi-square) on the percentage of children scoring within the clinical range on the cm and the CBCL scales. Results Group mean differences. Self-reported levels of depressive symptomatology and anxiety were significantly higher in children with a terminally ill parent than in their community counterparts (Table 2). Specifically, group mean differences were found on the cm and on both the State and Trait Anxiety scales for younger children (STAIC) and on the State Anxiety scale for older children (STAIY). Although not significantly different, there was also a trend toward higher scores on the Trait Anxiety scale for the older children. Study children also reported significantly lower levels of self-esteem on the SEI. Parents' reports on the CBCL also suggest that children with a terminally ill parent are less well adjusted than those in the comparison group. Group mean differences on the CBCL scales (Table 3) show that children in the study sample scored significantly higher on total behavior problems and both the internalizing and externalizing subscales. Not only did study children exhibit elevated levels of behavior problems, but they scored significantly lower than community children on total social competence and school subscale. In addition, on the social competence subscale study, children showed a trend toward lower scores. Only the activities subscale showed no group difference. Proportions scoring within the clinical range. The proportion of children in each sample whose scores on the CDI were within the clinical range is given in the top third of Table 4. At clinical cutoff scores of both 11 and 14, the proportion of study children reporting levels of depressive symptomatology within the clinical range was significantly higher than that in the community sample. Virtually twice as many study children scored in the clinical range on the CDI, using either the more inclusive or more restrictive cutoff score. Significant group differences were also found on the CBCL scales. A significantly higher proportion of study children scored within the clinical range on total behavior problems, externalizing, and one or more narrow-band syndrome subscales. A higher proportion of study children also scored within the clinical range for internalizing, but this difference was only marginally significant. With respect to the CBCL competence scales, a significantly higher proportion of study children were found in the clinical range on both total competence and the school subscale. Discussion In this study, children facing the impending death of a J. Am. Acad. Child Adolesc. Psychiatry, 31:2, March 1992
ADJUSTMENT TO PARENTAL TERMINAL ILLNESS TABLE
TABLE
2. Means on the Children's Depression Inventory (CDI'), State-Trait Anxiety Inventory (STAICb and STAIYC), and Self-Esteem Inventory (SEF): Community vs. Study Sample
219 228
27.7 31.0
5.9 6.6
23 21
32.8 37.4
195 194 382
36.8 40.4 76.8
10.7 11.2 19.7
18 19 40
46.8 44.6 68.8
3. Means on the Broad-Band Behavior Problem and Social Competence Scales of the Child Behavior Checklist (CBCL'): Community vs. Study Sample
Community Sample Measures
X
CBCL Behavior Problem Scales Intemalizing*** Extemalizing* * Total behavior problems***
(N
(N
48.9 48.8 50.9 52.4
Study Sample
X
= 151)
47.1 46.1 45.7
CBCL Competence Scales Activities Schoolt Social** Total competence*
SD
~
SD (N
8.6 8.2 9.6
55.0 52.2 54.6
7.5 7.4 6.5 10.7
49.1 45.6 44.8 47.4
139)
= 29) 10.5 10.8 11.5
(N
~
28) 6.5 10.2 10.3 12.7
'Achenbach and Edelbrock, 1983. tp :5 0.10; *p :5 0.05; ** p :5 0.01; *** P :5 0.001.
parent to cancer exhibited higher mean levels of psychological distress-both as reported by children themselves and by their well parents-than a comparison sample of community children. Furthermore, on a number of scales, a significantly higher proportion of children with a terminally ill parent scored within the clinical range. Study children experienced not only elevated depressive symptomatology, anxiety, and other internalizing symptoms, but also externalizing problem behaviors. This last finding is not surprising, given that children may respond to stress with a variety of different types of behaviors and that depressive symptomatology in children is often "masked" by aggressive behavior. Diminished self-esteem and deficits in social competence were also identified in the sample of children with a terminally ill parent. Their lower mean scores on these scales as well as higher proportions within the clinical level on several of the competence scales are disturbing because they indicate not only that these children are experiencing problems in multiple domains, but also that they have fewer resources to help them adjust to the imminent loss of their parent. This is of some concern, given recent findings that social competence is a protective factor in children at risk for psychopathology (Garmezy, 1983; Walker and Downey, J. Am. Acad. Child Adolesc. Psychiatry, 3 I :2, March 1992
1989). Diminished involvement in social activities and poor school performance may further complicate children's longer-term adjustment to parental death by undermining their achievement of developmentally critical social and academic milestones. As noted above, Rosenheim and Reicher (1986) suggested that children with a terminally ill parent face a "lonely predicament" in the sense that their parents may not recognize that they are experiencing difficulties. This observation is not supported by the findings reported in this study. Parents in the study sample reported elevated scores on several broad-and narrow-band scales of the CBCL and do not appear to be unaware of their children's maladaptive behaviors, even if they do not conceptualize them as distress. The issue of the concordance of parent and child reports, although not examined in this paper, will be fully addressed as the sample size increases and additional self-report measures are employed that tap an even broader range of children's symptomatology. There are at least three different ways to conceptualize the clinical significance of the study children's distress, with different implications. First, the distress may be an essential component in the initiation of the mourning process. In this 331
SIEGEL ET AL. TABLE 4. Proportion of Children Scoring within the Clinical Range on the CDI' and the Broad and Narrow-Band Behavior Problem and Social Competence Scales of the CBCLb : Community vs. Study Sample
Measures CD!
% Community Sample
% Study
Sample
(N = 432)
(N = 42)
Clinical cutoff score of 14* Clinical cutoff score of 11 **
14 21
40
CBCL Behavior Problem Scales Broad Band Scales Intemalizingt Extemalizing* Narrow Band Scales** In clinical range on One scale Two or more scales Total behavior problems**
(N = 151)
CBCL Competence Scales
(N;:': 139)
Activities School* Social Total competence**
27 (N
= 29)
5 3
17 14
6 3 5
10 16 21 (N;:': 28)
1
2 1 8
14 5 19
'Kovacs, unpublished manuscript, 1983. bAchenbach and Edelbrock, 1983. tp :0; 0.10; *p :0; 0.05; **p :0; 0.01; ***p :0; 0.001.
case, it would be viewed as a temporary pressure that would force the onset of the important and healthy work of mourning. Mourning itself would then lend ultimately to alleviation of the distress. The second explanation is that the distress, especially when it leads to symptom formation, may be related to pathological mourning in which a life-long propensity for depression and anxiety disorders might be an outcome. In this event, preventive professional intervention would be indicated. A third explanation is that the distress, even including symptom formation, might be transient and primarily a reflection of the upheavals of the terminal stage of the illness. In this case, a reduction in distress, even a reduction in symptoms, would likely follow the settling turmoil in family life, even if the settling is the result of the death of the parent. Broad generalization of the findings must, of course, be guarded. First, although families participating in this study may be typical of families treated at this comprehensive cancer center, the center's patient population is predominantly white and middle or upper class. Additional studies need to be conducted with populations from diverse ethnic and socioeconomic groups. Similarly, the adjustment of children who experience a parent with a fatal illness other than cancer remains of interest. Investigators are encouraged to systematically assess such children and compare the nature and extent of their adjustment problems with children in this study. Among the strengths of this current study is its sample size, which exceeds that of most studies of childhood bereavement. Moreover, by matching the study and community samples on age, sex, and number of children within the
332
household, three major variables to which group differences could otherwise be attributed have been controlled. Furthermore, the study sample was restricted to children whose parent's death was imminent (i.e., within 6 months after the collection of the adjustment data), thus avoiding a problem encountered in other studies of the effects of childhood parental "loss" in which children experiencing diverse kinds of loss (e.g., divorce, suicide, death after protracted illness) are aggregated. Although the larger samples resulting from such heterogeneous inclusion may seem to enhance the power to discern relationships, in fact, the underlying diversity may obscure meaningful associations that would be observable in a more homogeneous sample. This study employed reliable, quantitative measures of children's adjustment completed by children and their parents. Future assessments of the study sample will include a third informant, the children's teachers, to investigate more fully children's behaviors and functioning outside of the home. Including this additional source of information will enable a detailed examination of children's school performance and peer relationships, which are important indicators of coping and adjustment, as well as problems related to undercontrolled behavior that may be most evident (and problematic) in the school context. The next step in this program of research, when the study sample size permits, will be to examine differences within age and gender subgroups and the effects of potentially important determinants of adjustment, such as gender of the ill parent and the length and course of their illness. Future research on this study population will also address the immediate and longer-term postdeath reactions of children. If it is found that the symptoms and behavior problems that the study sample exhibited preloss persist or predict later psychopathology after parental death, then the fact that children are already significantly distressed during the parent's terminal illness implies that this period presents the opportunity to professionally intervene to facilitate children's longer-term adjustment to parental loss. Under any circumstances, the present fmdings suggest that children's emotional well-being during serious parental illness should receive greater professional and familial attention. Clinicians may find it appropriate to directly assess and work with children to alleviate their heightened distress while facing a parent's impending death, and, as importantly, sensitize parents to the sources of children's psychological distress and problem behaviors and encourage open, age-appropriate communication between parents and children about issues regarding serious illness and death. References Achenbach, T. M. & Edelbrock, C. S. (1981), Behavioral problems and competencies reported by parents of normal and disturbed children aged 4 through 16. Monographs ofthe Societyfor Research in Child Development, 46 (Serial No. 188). - - - - (1983), Manual for the Child Behavior Checklist and Revised Child Behavior Profile. Burlington, VT: University of Vermont, Department of Psychiatry. Adams-Greenly, M. & Moynihan, R. T. (1983), Helping the children of fatally ill parents. Am. J. Orthopsychiatry, 53:219-229. Berlinsky, E. B. & Biller, H. B. (1982), Parental Death and Psychological Development. Lexington, MA: D. C. Heath. J. Am. A cad. Child Adolesc. Psychiatry, 3 J :2, March J992
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Brody, G. H. & Forehand, R. (1986), Maternal perceptions of child maladjustment as a function of the combined influence of child behavior and maternal depression. J. Consult. Clin. Psychol., 54:237-240. Brown, G. W., Harris, T. O. & Bifulco, A. (1986), Long-term effects of early loss of parent. In: Depression in Young People, ed. M. Rutter, C. E. Izard & P. B. Read. New York: The Guilford Press, pp. 251-296. Coopersmith, S. (1984), Self-Esteem Inventories. Palo Alto, CA: Consulting Psychologists Press. Crook, T. & Eliot, J. (1980), Parental death during childhood and adult depression. Psycho!. Bull., 87:252-259. Doerfler, L. A., Feiner, R. D., Rowlison, R. T., Raley, P. A. & Evans, E. (1988), Depression in children and adolescents. J. Consult. Clin. Psychol., 56:769-772. Elizur, E. & Kaffman, M. (1982), Children's bereavement reactions following death of the father. J. Am. Acad. Child Psychiatry, 21:474-480. Finkelstein, H. (1988), The long-term effects of early parent death. J. Clin. Psychol., 44:3-9. Garmezy, N. (1983), Stressors of childhood. In: Stress, Coping and Development in Children, ed. N. Garmezy & M. Rutter. New York: McGraw Hill, pp. 43-84. Gray, R. E. (1987), Adolescent response to the death of a parent. Journal of Youth and Adolescence, 16:511-525. Kazdin, A. E., French, N. H., Unis, A. S. & Esveldt-Dawson, K. (1983), Assessment of childhood depression. J. Am. Acad. Child Psychiatry, 22:157-164. Kranzler, E. M., Shaffer, D., Wasserman, G. & Davies, M. (1990), Early childhood bereavement. J. Am. Acad. ChildAdolesc. Psychiatry, 29:513-520. Krupnick, J. L. (1984), Bereavement during childhood and adolescence. In: Bereavement, ed. M. Osterweis, F. Solomon & M. Green. Washington, DC: National Academy Press, pp. 99-141. Lloyd, C. (1980), Life events and depressive disorder reviewed. Arch. Gen. Psychiatry, 37:529-535.
J. Am. Acad. Child Adolesc. Psychiatry, 31 :2, March 1992
Mokros, H. B., Poznanski, E., Grossman, J. A. & Freeman, L. N. (1987), A comparison of child and parent ratings of depression for normal and clinically referred children. J. Child Psychol. Psychiatry, 28:613-627. Rosenheim, E. & Ichilov, Y. (1979), Short-term preventive therapy with children of fatally-ill parents. Israel Annals of Psychiatry, 17:67-73. - - & Reicher, R. (1986), Children in anticipatory grief. Journal of Clinical Child Psychology, 15:115-119. Smucker, M. R., Craighead, W. E., Craighead, L. W. & Green, B. J. (1986), Normative and reliability data for the Children's Depression Inventory. J. Abnorm. Child Psychol., 14:25-39. Spielberger, C. D., Gorsuch, R. L., Lushene, R., Vagg, P. R. & Jacobs, G. A. (1983), Manualfor the State-Trait Anxiety Inventory (Form Y). Palo Alto, CA: Consulting Psychologists Press. - - , Edwards, C. D., Lushene, R. E., Montuori, J. & Paltzek, D. (1973), STAlC Preliminary Manual. Palo Alto, CA: Consulting Psychologists Press. . Tennant, c., Bebbington, P. & Hurry, J. (1980), Parental death in childhood and risk of adult depressive disorders. Psychol. Med., 10:289-299. Tweed, J. L., Shoenbach, V. J., George, L. K. & Blazer, D. G. (1989), The effects of childhood parental death and divorce on six-month history of anxiety disorders. Br. J. Psychiatry, 154:823-828. Van Eederwegh, M. M., Bieri, M. D., Parrilla, R. H. & Clayton, P. J. (1982), The bereaved child. Br. J. Psychiatry, 140:23-29. Walker, E. & Downey, G. (1989), Developmental Psychology. Wallerstein, J. S. (1986), Children of divorce. In: Stress, Coping and Development in Children, ed. N. Garmezy & M. Rutter. New York: McGraw Hill, pp. 265-302. - - & Blakeslee, S. (1989), Second Chances. New York: Ticknor and Fields. Weissman, M. M., Orvaschel, H. & Padian, N. (1980), Children's symptom and social functioning self-report scales. J. Nerv. Ment. Dis., 168:736-740. Wellisch, D. K. (1979), Adolescent acting out when a parent had cancer. International Journal of Family Therapy, 1:230-241.
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Abstract. Although a substantial number of children experience serious parental illness and death, the adjustment problems attendant to the stress of having a fatally ill parent have not been examined systematically. This paper compares the psychosocial adjustment of 62 school-aged children with a terminally ill parent (study sample) with that of children in a community sample, using several standard rating scales. Study children had significantly higher levels of self-reported depression (Children's Depression Inventory) and anxiety (State-Trait Anxiety Inventory) and lower self-esteem (Self-Esteem Inventory). Parents also reported study children's significantly higher behavior problems and lower social competence (Child Behavior Checklist). Increased professional attention to this vulnerable population is encouraged. J. Am. Acad. Child Adolesc. Psychiatry, 1992, 31, 2:327-333. Key Words: anticipatory grief, parental illness, parental death, childhood loss. Increasingly, professional attention is being focused on children's psychological adjustment to stressful life events (e.g., Garrnezy, 1983), including parental death (see generally Berlinsky and Biller, 1982; Krupnick, 1984). A large clinical and empirical literature has explored the consequences of parental death in childhood, particularly its association with adult depression. Yet, as underscored by a number of reviewers, abundant methodological shortcomings challenge the validity of the empirical research and may account, in large part, for the conflicting conclusions regarding the impact of this event. For example, whereas one comprehensive review has concluded that "the childhood loss of a parent by death generally increases depressive risk by a factor of about 2 or 3" (Lloyd, 1980), others have contended that' 'parental death in childhood appears to have little effect on adult depressive morbidity" (Crook and Eliot, 1980; Tennant et aI., 1980). Certain more recent work has attempted to address the limitations of past research, to entertain more complex conceptual models leading from· parental death to psychological symptomatology, and to examine the types of psychosocial adjustment beyond depressive symptomatology, notably anxiety disorders; however, both positive and negative findings persist regarding the impact of the loss of a parent on subsequent adjustment. On balance, nonetheless, there remains a considerable clini-
Accepted July 9, 1991. Karolynn Siegel, Frances Mesagno, Daniel Karus, and Karel Banks are at Memorial Sloan-Kettering Cancer Center, New York, NY. Grace Christ is in private practice, and Rosemary Moynihan is with the School of Social Work, New York University. The authors thank Margaret Babbott, Marilyn Newman, Helen Gonzalez, Emestine Briggs, Annette Schwartz, Mary Baldwin, Francesca Canin, Joanne DeRosa, Leslie Gibson, Shelley Hooe, Anita Lapof, Vanessa Lodico, Elizabeth Pike, Lauren Saler, Shera Spar, and Ilana Tolpin for their assistance on this project. This work was supported in part by grants from the National Institute of Mental Health (MH41967), the American Cancer Society (PRB-24A), the van Amerigen Foundation, and the Society of Memorial Sloan-Kettering Cancer Center. Reprint requests to Dr. Karolynn Siegel, Memorial Sloan-Kettering Cancer Center, 410 E. 62nd St. No. 745, New York, NY 10021. 0890-8567/92/3002-0327$03.00/0© 1992 by the American Academy of Child and Adolescent Psychiatry. J. Am. Acad. Child Adolesc. Psychiatry, 31:2, March 1992
cal and empirical basis for inferring that the death of a parent during childhood places an individual at increased risk for social impairment and/or psychopathology both concurrently (e.g., Elizur and Kaffman, 1982; Gray, 1987; Kranzler et aI., 1990; Van Eederwegh et aI., 1982) and in adulthood (e.g., Brown et aI., 1986; Finkelstein, 1988; Tweed et aI., 1989). As evidence has accumulated suggesting that bereaved children constitute a vulnerable population, clinicians have become increasingly aware that children need support to facilitate their healthy adaptation to parental death. Yet, children's mental health in the period immediately before parental death from chronic illness typically has been overlooked by clinicians, research investigators, and perhaps even by parents. This may be attributed, at least in part, to the focus of professionals and family members on the patient's survival as well as to the persistent belief that children should not be confronted with, and in fact should be sheltered from, issues surrounding serious illness and death. However, children may already be exhibiting high levels of distress in response to the significant life changes accompanying parental terminal illness. They are already experiencing loss from separations because of hospitalizations, increasing limitations in both parents' physical and emotional availability and role functioning, changes in family routines, a shift in the family's emotional climate, and often a decrease in family financial resources as efforts are directed toward prolonging the patient's survival, ensuring adequate caregiving, and reaching difficult decisions regarding the continuation or cessation of treatment. In this respect, terminal illness may be compared with other major events, such as divorce, that involve loss outside of the children's control (Wallerstein, 1986). Like divorce, parental terminal illness involves social network exits and long-term changes. The two situations differ, however, with regard to the emotional climate of the family, which in the case of divorce may include more overt and acknowledged anger and resentment and more clearly defined divided loyalties. Furthermore, the child of a terminally ill parent will eventually suffer the additional trauma of permanent parental loss. Yet, despite children's vulnerability during the terminal stage of a parent's illness, little systematic research has 327
SIEGEL ET AL.
been conducted regarding children's adjustment at this time. Therefore, a compelling reason to describe children's adjustment during this preloss period is to heighten professional and lay sensitivity to children's distress during a parent's fatal illness. A second important reason for investigating the adjustment of children with a terminally ill parent is that this is a necessary first step toward documenting the natural history of children's grief reactions first to impending parental death and then subsequent to the loss. There are no systematic data documenting the nature and intensity of symptomatology typically experienced by children who face the enormous stress of parental terminal illness and eventual death. Thus, there is no empirical basis for judging whether the kinds or levels of distress that might be observed in clinical practice are normal (in the service of coping) or maladaptive. That is, what constitutes' 'normal" as opposed to "complicated" or "pathological" grief reactions in children? The study's objectives, then, are to heighten professional awareness of a vulnerable population of children and provide an empirical basis for evaluating the "normality" or at least the typicality of children's reactions to a parent's impending death by examining reliable and valid data on children's psychosocial adjustment during the terminal stage of their parent's illness. Studying children's responses to stress is particularly problematic because of the complex nature and variability of the symptomatology observed in response to stress. The authors' experience as well as clinical and research reports of children's psychological adjustment to serious parental illness and death suggest that children may respond with internalizing (e.g., depression and anxiety) and/or externalizing (e.g., aggression) behaviors (Adams-Greenly and Moynihan, 1983; Rosenheim and Ichilov, 1979; Van Eerdewegh et aI., 1982; Wellisch, 1979). Similarly, work with children of divorce suggests that both internalizing and externalizing behavior problems are common (e.g., Wallerstein, 1986; Wallerstein and Blakeslee, 1989). Therefore, any examination of children's psychological adjustment to parental terminal illness should consider a broad range of problem behaviors and symptoms. Families of terminally ill cancer patients present a unique opportunity to examine children's responses to imminent parental loss. The course of cancer is usually protracted, and, even when children are not told that their parent's condition is unresponsive to treatment, irreversible, or terminal, our clinical experience suggests that children are generally aware of the severity of illness and the parent's progressive deterioration and increased disability. Even young children generally recognize this declension by such factors as a parent's multiple hospitalizations, weight loss, increased fatigue, and inability to perform previous familial roles. The present study was undertaken to address the paucity of research on children's reactions to parental terminal illness while avoiding certain methodological problems that typically threaten the validity of studies of childhood bereavement, notably restricting samples to children referred for psychological treatment, using extremely small numbers of children and assessing only a limited range of children's 328
affective and behavioral responses to the event. In addition, most studies of children's reactions to stressful life events, particularly parental death, rely on parents' reports of children's psychological status; rarely are children assessed directly. However, parents' reports may be unreliable, particularly of children's affective states. For example, several studies (Doerfler et aI., 1988; Kazdin et aI., 1983; Weissman et al., 1980) have found little relationship between child and parent ratings of depression. Parents' own distress may further compromise their reliability as informants (Brody and Forehand, 1986). Also, parents may be so involved with the day-to-day care of their spouse that they may not recognize more subtle changes in their child's behavior, especially if the child is trying to mask his or her distress in an effort to protect both the ill and well parent. Some evidence of parents' difficulty in perceiving their children's distress during parental terminal illness was found by Rosenheim and Reicher (1986) in a study of 16 families of cancer patients. The correlations between the children's self-reports and reports by their parents on eight items tapping children's fear, restlessness, and subdued mood were small and led the authors to conclude that children with an ill parent find themselves in a "lonely predicament." Therefore, it is critical to obtain reports from both child and parent to fully assess a child's adjustment (Mokros et aI., 1987). In this study, information regarding children's symptomatology was obtained from both children (in selfreports of depressive symptomatology, anxiety, and selfesteem) and parents (in ratings of the children's behavior problems and competencies). Because parents and children provide important, nonoverlapping information, the focus in this paper is not on the correspondence between their ratings, but on the types of problems reported by either parents or children. Method Subjects
This study compares the psychosocial adjustment of children with a terminally ill parent (the study sample) with that of nonreferred children (the community sample). The study sample consists of 62 children, aged 7-16, from the families of 42 patients who were receiving medical treatment for advanced cancer at a comprehensive cancer center in New York City. These families are participants in an ongoing longitudinal study of children's adaptation to parental serious illness and death. Participation is offered to all twoparent, English-speaking families identified at the center in which there are age-eligible children and in which the ill parent is judged by his or her physician to have an expected survival time of approximately 4 to 6 months. The data on children's symptomatology reported below were collected during (or, in the case of the CBCLs, very shortly after) the first research interview with the family, which was conducted at entry into the study during the parent's terminal illness. Potential racial or ethnic differences in adjustment deserve investigation and will be the focus of future research reports as the number of minority families increases. At the J. Am. Acad. Child Adolesc. Psychiatry, 31:2, March 1992
ADJUSTMENT TO PARENTAL TERMINAL ILLNESS
1. Characteristics of the Study Sample-Unweighted (Child
TABLE
is the Unit of Analysis) and Weighted (Family is the
Unit of Analysis)
Sex Male Female Age (years)
7-9 10-11
12-13 14-16 Mean (SD) Religion Catholic Jewish Protestant Other Sex of ill parent Male Female
% Unweighted (N = 62)
% Weighted (N = 42)
45 55
43 57
39 16 16 29
39 17 11
(2.9)
33 11.2 (3.0)
50 27 21 2
50 26 21 2
11.1
60 40
current time, however, only five such families are among the study sample, precluding group comparisons. Therefore, to increase the sample's racial or ethnic homogeneity, the analyses presented below include only children whose parents are both white. A second restriction on the sample was also imposed. Despite the physician's estimate of survival time, patients in the study often survive significantly longer than 6 months. Therefore, to ensure that, for all children, adjustment was assessed during the parent's actual terminal period, the study sample includes only children in white families in which the parent subsequently died less than 6 months (specifically, 180 days) after the baseline research interview. The study sample is described in Table 1, which presents demographic characteristics using both the child and family as the unit of analysis (i.e., unweighted and weighted, respectively). Weighting by the reciprocal of the number of participating children within each household is used to correct for the disproportionate weight that would otherwise be given to families with multiple children. Without this adjustment, bias is introduced because the scores of children within a family are presumed to be nonindependent. The community sample consisted of students attending elementary, middle, or high school in a public school system in suburban New Jersey. The school system was selected for the comparison sample because its student body is demographically similar to the study sample. For example, community students are predominantly white (85%), and the estimated 1990 median household income in this school district was $63,275 compared to an estimated median household income of $53,736 in the study sample during the year before the ill parent's diagnosis. In the analyses presented here, the group of students from which the matched community sample was composed was restricted to native-born, white children living in two-parent families. J. Am. Acad. Child Adolesc. Psychiatry, 31:2, March 1992
As was the case with the study sample, the unit of analysis was the family, i.e., data were weighted by the reciprocal of the number of children in the family for whom data were available. Furthermore, to ensure that the distribution of families within the community sample was comparable with respect to age, sex, and number of children present in the household, sample data were then weighted on the basis of these variables (age categories: 7-9, 10-11, 12-13, 14-16; children in household categories: 1,2,3,4, or more). A total of 556 students from 434 families were included in the community sample. Measures Depressive symptomatology. Levels of depression in the two samples were assessed with the Children's Depression Inventory (CDI) (Kovacs, 1983), a frequently used, 27-item self-report inventory that measures children's depressive symptoms within the past 2 weeks. Each item consists of three statements, graded in severity, that are assigned values from 0 (not severe) to 2 (severe), providing a potential score range of 0 to 54. In normative studies, about 10% of children within community samples have been found to score at or above 19 on the CDI, one frequently used cutoff for probable clinical depression (Doerfler et aI., 1988; Smucker et aI., 1986). Other investigators have found this cutoff too restrictive and have suggested cutoff scores of 14 to identify children in need of treatment and 11 for those warranting further assessment. In this study, cutoff scores of both 11 and 14 on the total CDI are presented to identify children with potentially clinically significant levels of depressive symptomatology. Anxiety. Children also reported directly on their symptoms of anxiety using the State-Trait Anxiety Inventory (STAIY) (Spielberger et aI., 1983), or, for most children aged 11 and younger, the State-Trait Anxiety Inventory for Children (STAIC) (Spielberger et aI., 1973). Both measures contain 20 items tapping state anxiety ("how you feel right now' '), that is, temporary elevations in anxiety such as those that occur after a stressful event. The measures also contain 20 items assessing anxiety as a personality trait ("how you generally feel"), permitting the identification of children who are prone to generalized anxiety. Both the State and Trait scales of the STAIY contain 4-point items, so that raw scale scores range from 20 to 80, with higher scores indicating greater anxiety. The scales of the STAIC are based on 3-point items, so that raw scale scores range from 20 to 60. Self-esteem. Children reported on their self-esteem, using the 25-item Self-Esteem Inventory-Short Form (SEI) (Coopersmith, 1984). This inventory taps the areas of experience (i.e., social, academic, family, and personal) likely to interact with the self-esteem of children. For each item, children indicate whether the statement is "usually" either "like me" or "unlike me." Items indicating positive self-esteem are scored 4 points each and those indicating negative selfesteem 0 points, resulting in a total raw score range of 0 to 100, with higher scores indicating higher self-esteem. Children within the study sample were administered the measures during a personal interview. Children completed 329
SIEGEL ET AL.
the measures on their own unless their reading skills were inadequate to do so. In any such case, the measures were read aloud to the child. In the community sample, the measures were administered within classrooms by nonschool personnel, without the teacher's presence. The measures were completed by students on their own, except in the third grade classes, in which they were read aloud. In both samples, children received instructions and were given practice items before the actual tests. The amount of missing data for these measures was low. The CDI was calculable for 98.0% of the study and 99.3% of the community children. The comparable figures for STAI-C or Y were 88.7% (study) and 95.5% (community) and for the SEI 95.2% (study) and 89.4% (community). Behavior problems and social competence. Parental reports of children's symptomatology were obtained with the Child Behavior Checklist (CBCL) (Achenbach and Edelbrock, 1983). The CBCL consists of 20 social competence and 118 behavior problem items and is extensively used in studies of adjustment in childhood. Social competence is assessed by parents listing the child's involvement in a variety of activities and groups. Behavior problems are rated by parents on a 3-point scale, indicating whether each behavior problem is "not true" of their child (0), "somewhat or sometimes true" (1), or "very or often true" (2) now or within the past 6 months. The CBCL provides Total Behavior Problem and Total Social Competence scores as well as scores on the following subscales: two broad-band behavior problem syndromes (i.e., internalizing and externalizing); several age-sex specific narrow-band behavior problem syndromes (e.g., depressed, delinquent); and three specific social competence subscales (i.e., activities, school, and social competence). In the study sample, to minimize respondent burden, CBCLs were left with the well (nonpatient) parents after the personal interview; parents were asked to complete the forms within 1 week of the interview and return them by mail to the research office. In the community sample, the CBCLs were sent to the mothers, and they returned them by mail. CBCLs were available for 64.5% of the children in the study sample. The response rate in the community sample was lower than that in the study sample, with CBCLs returned for 40.3% of the students who completed the selfreport measures. Software available from the developers of the CBCL was used to compute T-scores from the raw CBCL data, with higher scores on the behavior problem scales and lower scores on the competence scales indicating poorer adjustment. T-scores on the narrow-band syndromes were computed for four age-sex subgroups (boys and girls, aged 6-11 and 12-16). Because the factor structure of the narrowband scales differs between these age-sex groups, mean differences between the study and community samples were not examined for the narrow-band syndromes. Extensive normative studies have been conducted for both clinical and community samples of children (Achenbach and Edelbrock, 1981; 1983). The normative cutoffs provided by Achenbach and Edelbrock were used to determine the proportion of children in the study and community samples 330
whose scores on the CBCL subscales indicated clinically significant levels of behavior problems or social competence. Analyses Mean group differences on the cm, the STAI State and Trait Scales, the SEI, and the CBCL Behavior Problem and Competence scores were examined using one-tailed T-tests. The two samples were also compared (using chi-square) on the percentage of children scoring within the clinical range on the cm and the CBCL scales. Results Group mean differences. Self-reported levels of depressive symptomatology and anxiety were significantly higher in children with a terminally ill parent than in their community counterparts (Table 2). Specifically, group mean differences were found on the cm and on both the State and Trait Anxiety scales for younger children (STAIC) and on the State Anxiety scale for older children (STAIY). Although not significantly different, there was also a trend toward higher scores on the Trait Anxiety scale for the older children. Study children also reported significantly lower levels of self-esteem on the SEI. Parents' reports on the CBCL also suggest that children with a terminally ill parent are less well adjusted than those in the comparison group. Group mean differences on the CBCL scales (Table 3) show that children in the study sample scored significantly higher on total behavior problems and both the internalizing and externalizing subscales. Not only did study children exhibit elevated levels of behavior problems, but they scored significantly lower than community children on total social competence and school subscale. In addition, on the social competence subscale study, children showed a trend toward lower scores. Only the activities subscale showed no group difference. Proportions scoring within the clinical range. The proportion of children in each sample whose scores on the CDI were within the clinical range is given in the top third of Table 4. At clinical cutoff scores of both 11 and 14, the proportion of study children reporting levels of depressive symptomatology within the clinical range was significantly higher than that in the community sample. Virtually twice as many study children scored in the clinical range on the CDI, using either the more inclusive or more restrictive cutoff score. Significant group differences were also found on the CBCL scales. A significantly higher proportion of study children scored within the clinical range on total behavior problems, externalizing, and one or more narrow-band syndrome subscales. A higher proportion of study children also scored within the clinical range for internalizing, but this difference was only marginally significant. With respect to the CBCL competence scales, a significantly higher proportion of study children were found in the clinical range on both total competence and the school subscale. Discussion In this study, children facing the impending death of a J. Am. Acad. Child Adolesc. Psychiatry, 31:2, March 1992
ADJUSTMENT TO PARENTAL TERMINAL ILLNESS TABLE
TABLE
2. Means on the Children's Depression Inventory (CDI'), State-Trait Anxiety Inventory (STAICb and STAIYC), and Self-Esteem Inventory (SEF): Community vs. Study Sample
219 228
27.7 31.0
5.9 6.6
23 21
32.8 37.4
195 194 382
36.8 40.4 76.8
10.7 11.2 19.7
18 19 40
46.8 44.6 68.8
3. Means on the Broad-Band Behavior Problem and Social Competence Scales of the Child Behavior Checklist (CBCL'): Community vs. Study Sample
Community Sample Measures
X
CBCL Behavior Problem Scales Intemalizing*** Extemalizing* * Total behavior problems***
(N
(N
48.9 48.8 50.9 52.4
Study Sample
X
= 151)
47.1 46.1 45.7
CBCL Competence Scales Activities Schoolt Social** Total competence*
SD
~
SD (N
8.6 8.2 9.6
55.0 52.2 54.6
7.5 7.4 6.5 10.7
49.1 45.6 44.8 47.4
139)
= 29) 10.5 10.8 11.5
(N
~
28) 6.5 10.2 10.3 12.7
'Achenbach and Edelbrock, 1983. tp :5 0.10; *p :5 0.05; ** p :5 0.01; *** P :5 0.001.
parent to cancer exhibited higher mean levels of psychological distress-both as reported by children themselves and by their well parents-than a comparison sample of community children. Furthermore, on a number of scales, a significantly higher proportion of children with a terminally ill parent scored within the clinical range. Study children experienced not only elevated depressive symptomatology, anxiety, and other internalizing symptoms, but also externalizing problem behaviors. This last finding is not surprising, given that children may respond to stress with a variety of different types of behaviors and that depressive symptomatology in children is often "masked" by aggressive behavior. Diminished self-esteem and deficits in social competence were also identified in the sample of children with a terminally ill parent. Their lower mean scores on these scales as well as higher proportions within the clinical level on several of the competence scales are disturbing because they indicate not only that these children are experiencing problems in multiple domains, but also that they have fewer resources to help them adjust to the imminent loss of their parent. This is of some concern, given recent findings that social competence is a protective factor in children at risk for psychopathology (Garmezy, 1983; Walker and Downey, J. Am. Acad. Child Adolesc. Psychiatry, 3 I :2, March 1992
1989). Diminished involvement in social activities and poor school performance may further complicate children's longer-term adjustment to parental death by undermining their achievement of developmentally critical social and academic milestones. As noted above, Rosenheim and Reicher (1986) suggested that children with a terminally ill parent face a "lonely predicament" in the sense that their parents may not recognize that they are experiencing difficulties. This observation is not supported by the findings reported in this study. Parents in the study sample reported elevated scores on several broad-and narrow-band scales of the CBCL and do not appear to be unaware of their children's maladaptive behaviors, even if they do not conceptualize them as distress. The issue of the concordance of parent and child reports, although not examined in this paper, will be fully addressed as the sample size increases and additional self-report measures are employed that tap an even broader range of children's symptomatology. There are at least three different ways to conceptualize the clinical significance of the study children's distress, with different implications. First, the distress may be an essential component in the initiation of the mourning process. In this 331
SIEGEL ET AL. TABLE 4. Proportion of Children Scoring within the Clinical Range on the CDI' and the Broad and Narrow-Band Behavior Problem and Social Competence Scales of the CBCLb : Community vs. Study Sample
Measures CD!
% Community Sample
% Study
Sample
(N = 432)
(N = 42)
Clinical cutoff score of 14* Clinical cutoff score of 11 **
14 21
40
CBCL Behavior Problem Scales Broad Band Scales Intemalizingt Extemalizing* Narrow Band Scales** In clinical range on One scale Two or more scales Total behavior problems**
(N = 151)
CBCL Competence Scales
(N;:': 139)
Activities School* Social Total competence**
27 (N
= 29)
5 3
17 14
6 3 5
10 16 21 (N;:': 28)
1
2 1 8
14 5 19
'Kovacs, unpublished manuscript, 1983. bAchenbach and Edelbrock, 1983. tp :0; 0.10; *p :0; 0.05; **p :0; 0.01; ***p :0; 0.001.
case, it would be viewed as a temporary pressure that would force the onset of the important and healthy work of mourning. Mourning itself would then lend ultimately to alleviation of the distress. The second explanation is that the distress, especially when it leads to symptom formation, may be related to pathological mourning in which a life-long propensity for depression and anxiety disorders might be an outcome. In this event, preventive professional intervention would be indicated. A third explanation is that the distress, even including symptom formation, might be transient and primarily a reflection of the upheavals of the terminal stage of the illness. In this case, a reduction in distress, even a reduction in symptoms, would likely follow the settling turmoil in family life, even if the settling is the result of the death of the parent. Broad generalization of the findings must, of course, be guarded. First, although families participating in this study may be typical of families treated at this comprehensive cancer center, the center's patient population is predominantly white and middle or upper class. Additional studies need to be conducted with populations from diverse ethnic and socioeconomic groups. Similarly, the adjustment of children who experience a parent with a fatal illness other than cancer remains of interest. Investigators are encouraged to systematically assess such children and compare the nature and extent of their adjustment problems with children in this study. Among the strengths of this current study is its sample size, which exceeds that of most studies of childhood bereavement. Moreover, by matching the study and community samples on age, sex, and number of children within the
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household, three major variables to which group differences could otherwise be attributed have been controlled. Furthermore, the study sample was restricted to children whose parent's death was imminent (i.e., within 6 months after the collection of the adjustment data), thus avoiding a problem encountered in other studies of the effects of childhood parental "loss" in which children experiencing diverse kinds of loss (e.g., divorce, suicide, death after protracted illness) are aggregated. Although the larger samples resulting from such heterogeneous inclusion may seem to enhance the power to discern relationships, in fact, the underlying diversity may obscure meaningful associations that would be observable in a more homogeneous sample. This study employed reliable, quantitative measures of children's adjustment completed by children and their parents. Future assessments of the study sample will include a third informant, the children's teachers, to investigate more fully children's behaviors and functioning outside of the home. Including this additional source of information will enable a detailed examination of children's school performance and peer relationships, which are important indicators of coping and adjustment, as well as problems related to undercontrolled behavior that may be most evident (and problematic) in the school context. The next step in this program of research, when the study sample size permits, will be to examine differences within age and gender subgroups and the effects of potentially important determinants of adjustment, such as gender of the ill parent and the length and course of their illness. Future research on this study population will also address the immediate and longer-term postdeath reactions of children. If it is found that the symptoms and behavior problems that the study sample exhibited preloss persist or predict later psychopathology after parental death, then the fact that children are already significantly distressed during the parent's terminal illness implies that this period presents the opportunity to professionally intervene to facilitate children's longer-term adjustment to parental loss. Under any circumstances, the present fmdings suggest that children's emotional well-being during serious parental illness should receive greater professional and familial attention. Clinicians may find it appropriate to directly assess and work with children to alleviate their heightened distress while facing a parent's impending death, and, as importantly, sensitize parents to the sources of children's psychological distress and problem behaviors and encourage open, age-appropriate communication between parents and children about issues regarding serious illness and death. References Achenbach, T. M. & Edelbrock, C. S. (1981), Behavioral problems and competencies reported by parents of normal and disturbed children aged 4 through 16. Monographs ofthe Societyfor Research in Child Development, 46 (Serial No. 188). - - - - (1983), Manual for the Child Behavior Checklist and Revised Child Behavior Profile. Burlington, VT: University of Vermont, Department of Psychiatry. Adams-Greenly, M. & Moynihan, R. T. (1983), Helping the children of fatally ill parents. Am. J. Orthopsychiatry, 53:219-229. Berlinsky, E. B. & Biller, H. B. (1982), Parental Death and Psychological Development. Lexington, MA: D. C. Heath. J. Am. A cad. Child Adolesc. Psychiatry, 3 J :2, March J992
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Brody, G. H. & Forehand, R. (1986), Maternal perceptions of child maladjustment as a function of the combined influence of child behavior and maternal depression. J. Consult. Clin. Psychol., 54:237-240. Brown, G. W., Harris, T. O. & Bifulco, A. (1986), Long-term effects of early loss of parent. In: Depression in Young People, ed. M. Rutter, C. E. Izard & P. B. Read. New York: The Guilford Press, pp. 251-296. Coopersmith, S. (1984), Self-Esteem Inventories. Palo Alto, CA: Consulting Psychologists Press. Crook, T. & Eliot, J. (1980), Parental death during childhood and adult depression. Psycho!. Bull., 87:252-259. Doerfler, L. A., Feiner, R. D., Rowlison, R. T., Raley, P. A. & Evans, E. (1988), Depression in children and adolescents. J. Consult. Clin. Psychol., 56:769-772. Elizur, E. & Kaffman, M. (1982), Children's bereavement reactions following death of the father. J. Am. Acad. Child Psychiatry, 21:474-480. Finkelstein, H. (1988), The long-term effects of early parent death. J. Clin. Psychol., 44:3-9. Garmezy, N. (1983), Stressors of childhood. In: Stress, Coping and Development in Children, ed. N. Garmezy & M. Rutter. New York: McGraw Hill, pp. 43-84. Gray, R. E. (1987), Adolescent response to the death of a parent. Journal of Youth and Adolescence, 16:511-525. Kazdin, A. E., French, N. H., Unis, A. S. & Esveldt-Dawson, K. (1983), Assessment of childhood depression. J. Am. Acad. Child Psychiatry, 22:157-164. Kranzler, E. M., Shaffer, D., Wasserman, G. & Davies, M. (1990), Early childhood bereavement. J. Am. Acad. ChildAdolesc. Psychiatry, 29:513-520. Krupnick, J. L. (1984), Bereavement during childhood and adolescence. In: Bereavement, ed. M. Osterweis, F. Solomon & M. Green. Washington, DC: National Academy Press, pp. 99-141. Lloyd, C. (1980), Life events and depressive disorder reviewed. Arch. Gen. Psychiatry, 37:529-535.
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Mokros, H. B., Poznanski, E., Grossman, J. A. & Freeman, L. N. (1987), A comparison of child and parent ratings of depression for normal and clinically referred children. J. Child Psychol. Psychiatry, 28:613-627. Rosenheim, E. & Ichilov, Y. (1979), Short-term preventive therapy with children of fatally-ill parents. Israel Annals of Psychiatry, 17:67-73. - - & Reicher, R. (1986), Children in anticipatory grief. Journal of Clinical Child Psychology, 15:115-119. Smucker, M. R., Craighead, W. E., Craighead, L. W. & Green, B. J. (1986), Normative and reliability data for the Children's Depression Inventory. J. Abnorm. Child Psychol., 14:25-39. Spielberger, C. D., Gorsuch, R. L., Lushene, R., Vagg, P. R. & Jacobs, G. A. (1983), Manualfor the State-Trait Anxiety Inventory (Form Y). Palo Alto, CA: Consulting Psychologists Press. - - , Edwards, C. D., Lushene, R. E., Montuori, J. & Paltzek, D. (1973), STAlC Preliminary Manual. Palo Alto, CA: Consulting Psychologists Press. . Tennant, c., Bebbington, P. & Hurry, J. (1980), Parental death in childhood and risk of adult depressive disorders. Psychol. Med., 10:289-299. Tweed, J. L., Shoenbach, V. J., George, L. K. & Blazer, D. G. (1989), The effects of childhood parental death and divorce on six-month history of anxiety disorders. Br. J. Psychiatry, 154:823-828. Van Eederwegh, M. M., Bieri, M. D., Parrilla, R. H. & Clayton, P. J. (1982), The bereaved child. Br. J. Psychiatry, 140:23-29. Walker, E. & Downey, G. (1989), Developmental Psychology. Wallerstein, J. S. (1986), Children of divorce. In: Stress, Coping and Development in Children, ed. N. Garmezy & M. Rutter. New York: McGraw Hill, pp. 265-302. - - & Blakeslee, S. (1989), Second Chances. New York: Ticknor and Fields. Weissman, M. M., Orvaschel, H. & Padian, N. (1980), Children's symptom and social functioning self-report scales. J. Nerv. Ment. Dis., 168:736-740. Wellisch, D. K. (1979), Adolescent acting out when a parent had cancer. International Journal of Family Therapy, 1:230-241.
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