Adjustment of Children Facing the Death of a Parent Due to Cancer

Adjustment of Children Facing the Death of a Parent Due to Cancer KAROLYNN SIEGEL, PH.D ., DANIEL KARUS, M .S.,

AN D

VICTORIA H. RAVEl S, PH.D.

ABSTRACT Objective: To compare predeath and postdeath levels of depression and anxiety reported by a sample of children who lost a parent to cancer ("study children") with the levels reported by children in a community sample who did not experience such a loss. Method: T scores for depressive symptomatology (Children's Depression Inventory) and state and trait anxiety (State-Trait Anxiety Inventory) were compared. Both samples were weighted to control for multiple participants from the same family. Weights for children in the community sample were further adjusted to match the distribution of the two samples with regard to gender, age, and number of children in the household. Comparisons were made using ttests and X2 tests. Results: Whereas study children reported significantly higher levels of depression and anxiety in the predeath period, levels of symptomatology reported for both measures postdeath were similar in both samples. Discussion: The data suggest that while many children experiencing the loss of a parent to cancer report elevated levels of depression and anxiety predeath, by 7 to 12 months postdeath their reports of depression and anxiety are comparable with those of similarly situated children in the community who did not experience such a loss. J. Am. A cad. Child Ado/esc. Psychiatry , 1996,35(4):442-450. Key Words: childhood bereavement, parental loss, psychologi-

cal adjustment.

Few events wo uld seem to hold as much potential to disrupt a child' s famil iar patterns of living, cha llenge his o r her assu m p tive wo rlds, and place him or her at risk for end ur ing psychological d istress th an the de ath of a pa rent. Yet empirical dat a from A m erica n studies of bereaved children w ho have lost a parent suggest that while they may expe rien ce elevated levels of vario us kinds of symptomatology (e.g., d epressive symptoms, so matic complaints, behavior problems) in the year foll owing their loss, pathologi cal grief reactions are pr ob abl y quite rare. Rather, m ost " no rm al" nonreferred ch ildre n (i.e. , those not pr eselect ed o n the basis of prior psych op athology or m ourning co m plicatio ns) exh ibit consider able resilience by approxi ma tely 1 year aft er the bereavement, as jud ged by co m monly used indicat ors. In a prospect ive stu d y by Va n Ee rd ewegh et al. (1982), the bereavement reacti ons of 10 5 children , 2 Accepted August 18. 1995. The authors are with M emorial Sloan-Kettering Cancer Center, Ne w York. This work uias supported in part by grallls pom the N IMH (M H4 1967), tlrc A merican Cancer Society (PRB-24A), and the van A meringen Foundation. Reprint requests to Dr. Siegel. M emorial Sloan-Kettering Cancer Center, 12 75 York Aven ue, N ew York, N Y 1002 / . OIl90-8567/ 96/ 3504-0442$03.0010© 1996 by the American Academy of C hild and Adolescent Psych iatry.

442

to 17 years of age , we re exam ined an d compared with sim ilar information collected from the parents of 80 co ntrol chi ldren . T he gro ups wer e co m pa ra ble in terms of gend er, scho ol perfo rm ance, age , soc ioeco n o m ic statu s, fam ily size, and pr evalen ce of psychiatric d iagnoses among parents. Parents of the bereaved children repo rt ed significant increases in their children's dysphoric mood, sleep difficulties, appetite reductions, withdrawn behavior, tempers, and bed-wetting in the yea r after their spouse's death. The bereaved children's school performance also showed a highly significant dr op. However, bereaved ch ildren were not significantly mo re likel y to experien ce a severe depressive synd ro m e th an ch ildren in the control gro up. Indeed, for most em o tio nal, so m atic, and beh avioral sym p to ms , parental repo rts on bereaved ch ildr en did not differ sign ifican tly fro m those on control ch ild ren . T he in vestigators co ncluded that the immedi ate effect of the death of one parent on a child is " usually mild an d short-lived." W eller et al. (1991 ) co m pared th e depressive sym pto m ato logy of 38 bereaved ch ildr en (identified through o b ituaries), aged 5 to 12 years, who had lost a parent 3 to 12 weeks earlier with th at of ch ild ren matched for age, gender, an d socioeco nom ic statu s who were

] . AM . AC AD . CHILD AD O LES C . PSYCH IAT RY, 35:4. APRI L 19 96

ADJUSTMENT OF BEREAVED CHILDREN

admitted to a psychiatric unit for depression. Using both parent and child repons, 37% of the bereaved sample met DSM-III-R criteria for a major depressive episode. Bereaved children and depressed children shared high levels of suicidal ideation (69% versus 81 %, respectively), but whereas none of the bereaved children had actually attempted suicide, 42% of the depressed children had. Using the same bereaved sample, Sanchez et al. (1994) found that none of the bereaved children met DSM-III-R criteria for separation anxiety disorder, overanxious disorder, obsessive-compulsive disorder, or simple phobia. When these children were compared with 19 "normal" children matched for age, the mean number of anxiety symptoms endorsed by the bereaved children was not significantly different from that of the normal sample. Other analyses of data from these samples found that rates of somatic symptoms experienced by the bereaved children did not differ significantly from those of the "normal" or clinical comparison groups (Sood et al., 1992). The school functioning and self-esteem of bereaved children were also found to be similar to those of "normal children" (Fristad et al., 1993). Another study (Silverman and Worden, 1992) described the normative responses of a community-derived sample of 125 bereaved children, aged 6 to 17 years, who had lost a parent from a variety of causes. The sample contained approximately equal numbers of boys and girls. Interviews conducted with the children and their surviving parents revealed that by about 4 months after death, 62% of children were no longer crying at frequent intervals, 74% were sleeping well, 74% reported experiencing headaches, and 19% reponed concentration problems at school. Surviving parents rated behavioral problems of most children in the low to normal range. Twenty-two percent of children thought their school performance had worsened since the parent's death, while 18% felt it had improved. The investigators concluded that 83% of children appeared to be coping effectively in the early months of their bereavement. In this article the psychosocial adjustment of 97 children in 70 families participating in an evaluation study of an intervention designed to facilitate the children's adaptation to parental serious illness and death is compared with that of children in a demographically matched community sample. Previously

]. AM. ACAD. CHIL.D ADOL.ESC. PSYCHIATRY . .'\5:4, APRIL 1996

reported data (Siegel et al., 1992) from the study demonstrated that children of terminally ill parents displayed significantly higher levels of depression and anxiety and lower levels of self-esteem relative to a comparably situated community sample. The purpose of the present analyses is to determine whether the differences that were present during the predeath period with regard to depression and anxiety persisted 7 to 12 months after death.

METHOD Subjects

Study Sample. Data in these analyses were obtained from participants in an evaluation study of a parent-guidance intervention. The intervention was designed to begin when the ill parent's physician estimated he or she had approximately a 4- to 6-month survival period and to continue until approximately 6 months after his or her death, During this period a clinical social worker typically met with the well parent alone five times before the ill parent's death and five times after death, with each child alone once before and once after death, and with the well parent and child(ren) together once before and once after death. Study participation was open to all English-speaking, two-parent families in which there were age-eligible (7 through 16 years) children, and the ill parent was suffering from advanced cancer with an expected survival time of approximately 4 to 6 months. Since the intervention was usually delivered in the family's home, participation was limited to families living within a 2-hour drive of midtown Manhattan. The present analyses are further restricted to children from families in which both parents self-identified as white; the child was assessed at least twice, once within 1 year prior to the death of the ill parent and once 7 to 12 months after the parent's death; and the child completed at least one adjustment measure at both assessments. The restriction with regard to race and ethnicity was made because there were only 11 families (19 children) meeting the other criteria for inclusion in which one or both parents was not white. The racial/ethnic composition of children in these I I fiunilies was too diverse to treat "nonwhites" as a single category and there were too few children in any single racial/ethnic group to conduct subgroup analyses. Since potential differences in the level of adjustment may be related to race or ethnicity, these analyses were restricted to families in which both parents and the study child(ren) were white. The bereaved sample (hereafter "study sample") was limited to children who were assessed within I year before and 7 to 12 months after the death of the ill parent to ensure that the children were assessed Juring the terminal phase of their parent's illness, a

time with an especially high potential for psychological distress. In addition, although the physician's estimate of survival time was approximately 4 to 6 months at study enrollment, some patients survived significantly longer. The I -year time frame allowed for the inclusion of families in which the patient survived longer than 6 months. The restriction of the posrdearh assessment to 7 to 12 months after death was made because there is reason to believe that children's psychological adjustment to the loss of a parent is

443

TABLE 1

strongly related to the length of time since the death. It was important to allow at least 6 months to elapse after the death of the parent before assessing the child to permit the posrdcarh phase of the intervention to be completed as well as to give the families time to get beyond the acute grief phase, adjust to the practical disruptions associated with the parent's illness and death, and begin to establish new routines as a single-parent household. The cutoff of 12 months after the death was selected to avoid the possibility of transient elevated symptomatology associated with "anniversary" reactions to the parent's death and to make sure the children were all assessed at a relatively equivalent length of time after the death of their parent. The restriction of analyses (for each symptom measure) to study children who had completed the measure at both assessments was made to retain strict comparability of the pre- and posrdcarh results. The amount of missing data was small. Only four study children (from four families), who otherwise met the criteria for inclusion in these analyses, were excluded because a symptom measure could not be computed at two assessment points. In earlier analyses, using data from all 141 children (from 97 families) who participated in the evaluation study and were assessed both before the parent's death and at least once afterward, we found that children in the intervention group tended to show greater improvement in their Tscores for the Children's Depression Inventory (COl) and both the State-Trait Anxiety Inventory (STAI)-State and STAI-Trait scales before death to after death than children in the control group. However, data from the subsamplc of 97 children (in 70 families) used in these analyses, which were restricted on the basis of race and length of time between the death of the parent and assessment, suggest there were no significant between-group differences for these measures with regard to improvement in T scores from the prcdearh to the posrdcarh assessment or in the average T scores reported at the prcdearh assessment and the postdeath assessment. To assess whether the restriction cri rcria used for these analyses somehow st.'iL'Clcd

childn.. . n who showed

gn.:atL'r

i m provcm cnr

in

T

Demographic Characteristics of the Study Sample: Unweighted and Weighted

Sex Male Female Age at prcdearh interview 7-9 years 10-11 years 12-13 years 14-17 years Mean age (years) SO (years) Age at postdeath interview 7-9 years 10-11 years 12-13 years 14-17 years Mean age (years) SD (years) Religion Catholic Jewish Protestant Other/mixed No. of days from prcdearh interview to death of ill parent Mean SO No. of days from death of ill parent to posrdeath interview Mean Sf) Sex of surviving parent Male Female

scores,

we compared the distribution of T scores for the COl and both STAI scales for the 44 children excluded from these analyses with the T scores for the 97 children included, to determine whether any significant between-group differences existed. We found no significant differences for the COl, STAI-State, or STAI-Trait at cithe I' the predeath or posrdeath assessment or in the amount of improvement in T scores between assessments. Given that the restrictions we have imposed for these analyses do not select children who showed greater improvement, coupled with the fact that there were no significant differences between the children selected with regard to whether they were in the treatment or control group, we chose to combine data from children in both arms of the study for these analyses. Table 1 shows the demographic characteristics of the study sample. Since the study's unit of analysis was the family, data presented in all analyses have been weighted by the reciprocal of the number of participating children in the household. Thus, while data presented were obtained from 97 children, the weighted number of cases presented in these analyses reflects the fact that the children came from 70 different families. for informational purposes Table 1 includes characteristics of the study sample both weighted and unweighted. As shown, 57% of the study children were girls. The mean length of time between the predeath interview and the parent's

444

Unweighted (%) (n ~ 97)

Weighted (%) (n ~ 70)

43 57

43 57

36 24 19 22 10.8 2.8

37 22 16 24 10.8 2.9

24 25 22 30 11.9 2.9

24 25 19 32 11.9 3.0

57 23 18 3

54 26 17 3

146.7 102.4

140.2 102.2

250.0

251.1 39.5

.18.0

43 57

46 54

death was approximately 4'h months (140.2 days) and the average length of time between the parent's death and the postdcarh assessment was approximately 80. months (251.1 days). Thus, on average there was a 13-month interval between the pre- and postdeath interviews. This interval is reflected in the shifting age distribution of study children between the two assessments. While 37% of the children were 7 to 9 years old at the time of the predearh interview, the corresponding figure at the time of the posrdcath interview was 24%. Conversely, 24% of the sample was 14 or older at the time of the predeath interview compared with 32% at the posrdeath interview. Community Sample. The community comparison sample was drawn from students attending public schools in a suburban community in New Jersey adjacent to New York City. The school system was chosen as the source of a comparison sample because its student body was demographically similar to the study sample in terms of racial/ethnic composition and household income. For example, the estimated 1990 median household income in this school district was $63,275 compared with an estimated median

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ADJUSTMENT OF BEREAVED CHILDREN

household income of $68,902 among families in the study sample (accrued 1988 to 1993) during the year before the ill parent's diagnosis. Like the study sample, the community sample was restricted to native-born white children living in two-parent families who had completed at least one of the symptom measures. As with the study sample, the unit of analysis for the community sample was the family, with cases weighted by the reciprocal of the total 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 to the study sample with respect to age, gender, and number of children present in the household, the community data were then weighted on the basis of these variables (age categories: 7 through 9, 10 through 11, 12 through 13, 14 through 16; children in household categories: 1,2,3,4 or more) to yield a weighted distribution in the community sample for these variables which was identical with that found in the study sample. While all combinations of age, gender, and number of children in the household occurred in the community sample, there were several combinations missing in the study sample. Community sample children having a combination of gender-age-number of children in the household which did not match that of any of the children in the study sample were given a weight of "0" and effectively excluded from analysis. While data from the study sample were longitudinal, data from the community sample children were cross-sectional. To control for the degree to which the study sample matured from the pre- to the postdeath interview, two different weights were computed for each respondent in the community sample-one to make the distribution of demographic characteristics of community children equivalent to that of study children at the time of the prcdcath interview and another to make it equivalent to the demographic distribution of study children at the posrdcarh interview. Because of the time interval between assessments, different potential combinations of genderage-number of children in the household did not occur in the study sample at each assessment. Of the 643 children in the community sample who completed one of the symptom measures, a total of 569 (in 441 different families) were in the proper genderage-number of children in the household categories for comparisons with the prcdcarh data from the study sample. The comparable number for the posrdcath assessment came from 616 children (in 467 families). It should be noted that seven children in the study sample were 17 years old at the time of the posrdcarh interview, meaning they were up to 1 year older than children in the community sample. However, this difference should not significantly influence results.

Measures Depressive 5'ymptomatology. Levels of depressive symptomatology in the two samples were assessed with the COl (Kovacs, 1992), a 27-item self-report inventory that measures children's depressive symptoms within the past 2 weeks. Each item consists of three suucmcnts, graded in severity, that are assigned values from 0 (not severe) to 2 (severe), providing a potential raw score ranging from 0 to 54. For comparison purposes with normative data, the children's scale scores were converted into age- and gender-specific linear T scores. Kovacs (1992) has assigned interpretive phrases to describe how children's T'scoscs compare with those of children of the same age range and gender in the normative sample. Based on these guidelines, T scores are described as "very much below average" (1 through 29), "much below average" (30 through 34),

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AM. ACAD. CHILD ADO!.FSc:. PSYCHIATRY, .i5:1, APRIL 19%

"below average" (35 through 39), "slightly below average" (40 through 44), "average" (45 through 55), "slighrly above average" (56 through 60), "above average" (61 through 65), "much above average" (66 through 70), or "very much above average" (71 through 1(0). For some analyses presented, T scores were further collapsed to retain power for between-group comparisons, with T scores of 1 through 39 referred to as "below average," T scores of 40 through 60 referred to as "average," and 7' scores of 61 through 100 referred to as "above average." Anxiety. Children in both samples reported directly on their symptoms of anxiety using the STAI. Children were given the STAI-Y Form (STAIY) (Spielberger et al., 1983) if they were 12 or older, or the State-Trait Anxiety Inventory for Children (STAle) if 11 or younger (Spielberger et al., 1973). Both measures contain 20 items tapping state anxiety, temporary elevations such as those that occur after a stressful event, and 20 items assessing anxiety as a personal trait, or proneness to generalized anxiety. Scores for both measures are computed by summing the scores for all 20 items. The State and Trait scales of the STAIY are composed of 4-point items (coded 1 through 4) with raw scale scores ranging fi-om 20 through 80, and the State and Trait scales of the STAle are composed of 3-point items (coded 1 through 3) with raw scale scores ranging from 20 through only 60. For both the STAIY and STAle, higher scores indicate greater anxiety. Because of sample maturation, 12 children filled out the STAIC at the predcarh assessment and the STAIY at the posrdcarh assessment. All STAle and STAIY scores were converted to age- and gender-specific linear T scores. The use of T scores allowed us to compare the pre- and postdearh scores of children who completed different forms of the STAI (STAIC or STAIY) at each assessment; it also allowed us to aggregate cross-sectional data across age groups (children aged 6 through 11 years who completed the STAI-C and children aged 12 through 17 years who completed the STAI-Y) at both points in time and to compare the levels of anxiety reported in both the study and community samples with those reported for normative samples. By definition a T score of 50 is assigned to children with a raw scale score equal to the mean score of children of the same age and gender in rhe normative sample. Furthermore, each increment of 10 points in T scores represents a difference of one standard deviation in raw scores among children of the appropriate age and gender in the normative sample. On the basis of this property of T scores, we classified children's scale scores as either "below average" (greater than one standard deviation below the appropriate mean in the normative sample, Tscore 1 through 39), "average" (within one standard deviation of the appropriate mean in the normative sample, T score 40 through 60), or "above average" (greater than one standard deviation above the appropriate mean in the normative sample, T score 61 or greater). Study sample children completed the measures on their own during private interviews, unless their reading skills were inadequate to do so. When a child was unable to read and comprehend the items by him- or herself, the measures were read aloud by the interviewer. In the community sample, the measures were adrninisrered in classrooms by nonschool personnel, without the teachers present. The measures were completed by students on their own, except in the third-grade class, in which they were read aloud. In both samples, children received instructions and were given practice items before the actual instrument was completed. The amount of missing data for these measures was low. In the community sample there was only one child who was otherwise eligible f(lI'

445

SIECEL ET AL.

inclusion who did not complete any of the symptom measures. Among children included in these analyses, the COl was calculable for all of the study children at both assessments and for all but three of the community sample children. Information regarding state anxiety was available for 96% of the study children at both assessments and a similar proportion of community sample children used for either the predeath (96%) or postdeath (97%) comparisons. Trait anxiety data were available for 95% of eligible study children at both assessments compared with 97% of community sample children used for prcdeath comparisons and 97% of community sample children used for postdeath comparisons. Comparisons of mean scores between samples were made using t tests. Comparisons of the distributions of T scores broken into ordinal categories were made using X2 tests. Given that community data were cross-sectional and study sample data longitudinal, change in the level of symptomatology could not be compared between samples.

RESULTS

TABLE 3 Children's Reported Level of Depression on the Children's Depression Inventory (CDI) Relative to a Normative Sample: Community Sample versus Study Sample at Predeath and 7 to 12 Months Postdeath COl T Scores Community Sample (%)

Predeath?" Below average Slightly below Average Slightly above Above average Posrdeath Below average Slightly below Average Slightly above Above average

(n

=

428)

Study Sample (%) (n = 70)

33

15

average

24 28

16

average

6 (n

=

9 468)

41 11

16 (n

=

70)

33

28

average

24 27

35

average

6 10

25 3

9

Depressive Symptomatology

** p ::; .01.

Comparison o/Study Sample with Community Sample. At the time of the predeath assessment, the children's self-reported levels of depressive symptomatology were, on average, significantly higher among children with a terminally ill parent than among community sample children Crable 2). The mean T score for children in the community sample was 46.0 versus 50.7 in the study sample (p < .001). However, by 7 to 12 months after the loss of a parent, children in the study sample displayed levels of depressive symptomatology that were vety similar to those reported by community sample children (46.1 versus 45.5; p = .625). Table 3 shows the distribution of children's T scores in both the study and community samples using the interpretive phrases specified by the author of the cor TABLE 2 Children's T Scores for the Children's Depression Inventory (CD!): Community Sample versus Study Sample, Predcath and 7 to 12 Months Postdeath CD! T Scores Community Sample

Prcdcarh*** Mean SD Posrdcath Mean SD

*** P ::; .001.

446

(n

~ 428) 46.0

Study Sample (n

lOA

(n ~ 468)

46.1 10.5

~

70)

50.7 11.0 (n

~

70)

45.5 9.6

to describe the relative level of depressive symptomatology associated with a given score based on normative data (Kovacs, 1992). These phrases, in effect, describe study and community sample children's T scores relative to the scores of children of the same gender and age in the normative sample. At the predeath assessment, T scores of children in the community sample were disproportionately "below average" relative to the scores of children in the study sample (33% versus 15%; p = .003). Conversely, children in the study sample were disproportionately in the higher than average categories, i.e., "slightly above average" or "above average" relative to the community sample (27% versus 15%; p < .00l). Eighty-five percent of the community sample had a T score that placed them in the "average" category or lower. While children in the study sample were significantly more likely to report a higher than "average" T score than their counterparts in the community sample during the terminal phase of their parent's illness, nearly three fourths (73%) of the study children reported Tscores that would be categorized as "average" or lower. At the time of the postdeath assessment, T scores for the study sample were comparable with those reported by the community sample, with similar proportions of children in both samples reporting "average" or lower levels of depressive symptomatology

j, AM. ACAD, CHILD ADOLESC. PSYCHIATRY, 35:4, APRIL 1996

AD JUSTMENT OF BEREAVED C HILDREN

relative to children in the norm at ive sam ple (84% of the com muni ty sam ple versus 88% of th e stu dy sam ple).

Persistence and Change in T Scores of Children in the Study Sample. Only 8% of th e study chi ldren had "above average" T scores at both assessm ents . In an effort to d etermine whe the r the improvement in the scores of study children was broad- base d, or m askin g co untervailing trends, study sample chi ld ren were d ivide d into th ree groups based o n the change in th eir repo rted T scor es fro m th e pr ed eath to the po stdeath assessm ent. While 30 % of th e stu dy ch ild ren reported " lower" postdearh T scores (a decrease of more than 5 points), and another 50 % repo rte d predeath and postd eath T scores within 5 points of each other, only 10 % reported "higher" po stdeath T scores (an increase of m ore than 5 points). Of th e st udy chi ldren reporting " hi ghe r" postdeath T scores (weig h ted n = 7) , th ree sti ll had "average" or " lowe r" post-death T sco res; two were "average" pred eath and either "sligh tly above average" (n = 1) o r " above average" (n = 1) postdearh : and two were " above average " for both assessm ents. These dat a suggest th at th e imp rovem ent in the m ean T scores of study child ren was not the result of large red uctions in the level of depressive sym pto matology repo rted by just a sma ll gro up of chi ldre n. Rather, a substantial proportion of th e chi ldren, especially th ose w ith high er levels of d epressive sym pto matology at th e tim e of th e predeath assessment, reported app reciabl y

lower cor sco res at th e postdcarh assessment. O nly a small m ino rity of st udy chi ldren had "above average" levels of depressive sym ptomato logy at both assessme nts, an d on ly a sma ll proporti on who reported . " average" or lower levels of de p ressive sym pto ma tol ogy durin g th e terminal ph ase of the ir parent's illn ess reported " above average" levels of suc h sym ptomatology 7 to 12 months after th e loss of th e parent. T hese data suggest, then, th at ma ny chi ldren who lose a parent may show sign ificant reduction s in the reponed levels of d epressi ve sym ptomato logy by just 7 to 12 mo nths after the death. Anxiety

Comparison ofStudy Sample with Community Sample. Data co mparing levels of state and trai t anx iety reported by the stu dy sam ple wi th those repo rte d by the com m unity sam ple show patterns sim ilar to those rep oned above rega rdi ng depressive sym pto ma to logy (Table 4). W hereas at the pred eath assessme nt mean T scores for both sta te and tr ait anx iety were signi fican tly hi gh er among st udy sam ple chi ldre n th an amo ng com m u n ity sam ple ch ild ren (sta te anxiety, 52 .3 versus 4 5.6, p < .00 1; trait an xiet y, 50.8 versus 44.6 , p < .00 1), by 7 to 12 mo nths after the death of th e parent, levels of a nxiety we re virt ually identical (state anx iety, 45.9 versus 45. 1; trai t anx iety , 45 .7 versus 45.2). When th e

TABLE 4 Children's T Score s on the State-T rait Anxiety In ven tory : Co m m un ity Sample versus Study Sam p le Pre death and 7 to 12 M onths Postdeath State An xiety (T Score s)

Prcdcar h?" t·.. Below average (0-39) Average (40-60) Above average (61-100) Mean score"?" F· ..•

SD

Posrdeath Below average (0- 39) Average (40-60) Above average (61- 100) M ean score

SD

Trait Anxie ty (T Scores)

Co m m uniry Sam p le (%)

Stu dy Sample (%)

Comm u nity Sample ('Yo)

St udy Sam ple ('Yo)

(n = 413)

(» = 67) 12

(n = 413)

(n = ( 7) 14

30

62 8

45.6 10.2 (n = 458) 32 60 8 45 .1 10 .2

65 23 52.3 11.5 (n = ( 7)

26 64 9 45.9 10.3

37 53 10

63 23

44.(,

'iO.H

12 .3 (n = 453)

( n = ( 7)

35 56 8 45.2 11.8

11.5 32

55 14 45 .7 11.6

*** p < .001.

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447

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distribution of predeath T scores is broken down into three categories ("below average" [l through 39], "average" [40 through 60], and "above average" [61 or greater]), it becomes apparent that for both scales, children in the community sample disproportionately had below-average T scores (state anxiety, 30% versus 12% of study children, p = .004; trait anxiety, 37% versus 14% of study children, p < .001), while children in the study sample disproportionately had aboveaverage T scores (state anxiety, 23% versus 8% of children in the community sample, p < .001; trait anxiety, 23% versus 10% of children in the community sample, p = .004). As was the case with T scores for the COl, the distribution of T scores on both the STAI-State and STAI-Trait scales suggests that most of the children in the community sample reported relatively low levels of state and trait anxiety compared with respondents in the normative samples. Slightly less than one third of the children in the community sample (30% in the predeath comparison sample and 32% in the postdeath comparison sample) had below-average scores on the state anxiety scale, while more than one third ofchildren in the community sample (37% in the predeath comparison sample and 35% in the postdeath comparison sample) had below-average scores on the trait anxiety scale. On the other hand, study sample children reported significantly higher levels of anxiety than did comparable children in the community sample at the predeath assessment, with levels ofstate and trait anxiety only slightly skewed compared to normative data. Postdeath T scores for children in the study sample, like those for children in the community sample, compare favorably with normative data. A higher than expected proportion of children in both samples reported belowaverage scores and a lower than expected proportion of children in both samples reported above-average scores compared with children of the same age and gender in the normative sample.

"lower" posrdeath T scores if their score decreased by more than 5 points. Those with predeath and posrdeath T scores within 5 points of each other were defined as "unchanged." Children whose postdeath T scores were more than 5 points higher than the score at their predeath assessment were defined as having a "higher" postdeath T score. One would expect a greater level of consistency in scores on the trait anxiety scale than in scores on the state anxiety scale since the former seeks to assess a more stable characteristic of the child's personality than the latter. This was not the case. Approximately equal proportions of children reported change for each measure. Forty-six percent of study children reported a decrease in their T scores for the state anxiety scale of greater than 5 points from the predeath to the postdeath assessment, 21 % reported an increase in such scores exceeding 5 points, and only 33% reported T scores at both assessments that were within 5 points of each other. The same figures for the trait anxiety scale were 47%, 19%, and 34%, respectively. As with depressive symptomatology, a greater proportion of the children reported an appreciable decrease in T scores for both measures of anxiety than reported an increase. Only a small percentage of children in the study sample reported high levels of anxiety at both assessments (3% for state anxiety; 8% for trait anxiety).

DISCUSSION

In this study, children facing the impending death of a parent due to cancer reported higher mean levels of psychological distress than a sample of similarly situated community children weighted to reflect the same age and gender distribution. However, by 7 to 12 months after the loss of the parent, the bereaved study children reported, on average, levels of depressive symptomatology and anxiety which were virtually identical with those reported by the community sample. These data have a number of implications. They suggest that the terminal phase of a parent's illness may be a period of greater psychological vulnerability for children than the period following the aetualloss. Several factors may account for this circumstance. The terminal phase may be the period of greatest patient suffering as the ravages of the disease become most evident and pronounced. Children are often particularly distressed

Persistence and Change in T Scores of Children in the Study Sample. To assess change in the study children's reported levels of state and trait anxiety from the predeath to the posrdearh assessment, they were divided into three groups based on the change in their reported T scores from the predeath to the postdeath assessment. As with the COl, children were defined as having

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ADJUSTMENT OF BEREAVED CHILDREN

by the physical changes that may occur during this time in the parent's appearance and diminished ability to carry out his or her usual family role responsibilities; that is, the loss of the parent as the child knew him or her begins. It may also be a time when the severity of the illness and poor prognosis can no longer be denied by family members. Parents may therefore choose this period to acknowledge to children that the parent's death is an outcome that must be anticipated. In contrast, while the actual death is a painful loss, the uncertainty is ended and the family can begin to reconstitute itself and plan for the future. Relief that the patient's suffering is over is also a common response that may alleviate family members' distress. The finding that the period of terminal illness of a parent may be a time of high psychological vulnerability for children takes on particular clinical significance given the growing availability of medical interventions that can sustain life for protracted periods and extend the terminal phase of a disease like cancer for many months. As a result, children's depression and anxiety may also remain elevated for extended periods, potentially affecting their relationships with peers as well as academic performance. The findings also suggest that a large proportion of children confronting the loss of a parent maintain "normal" levels of adjustment throughout the terminal illness and acute bereavement period, at least according to measures based on self-reported symptomatology. The measures of depression and anxiety used were gross indicators of symptomatology rather than measures used in defining clinically significant levels of morbidity. It is important that future research determine whether these findings hold when more refined and/or grief-specific measures are utilized. It is important to keep in mind that there may be specific grief-related issues which are not tapped by such measures that may have serious implications for children's subsequent development and psychological health as adults. This finding may also be attributable, in part, to the relatively "advantaged" sample under investigation. That is, all children came hom intact families and most came from middle- and upper-income households, although the exceptional expenses associated with a protracted illness may have compromised the stability of some. Finally, the data suggest that children who lose a parent to illness-an event that clearly represents a

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profound psychological insult-may often report levels of psychological adjustment comparable with those reported by similarly situated children in the community who did not experience such a loss, as soon as 7 to 12 months after the loss. Clearly, the fact that in all cases the death was anticipated may have provided the opportunity for parents to gradually prepare the children for the death and for the children to emotionally rehearse the loss. The clinical validity of the notion of "anticipatory grief' and its oft presumed positive adaptive value has been questioned (Siegel and Weinstein, 1983), but it may provide some part of the explanation for the observed predeath to postdeath improvement seen in these study children. It is important to keep in mind that even though most of the distress reported before the parent's death appears to resolve shortly afterward, alleviation of that distress is still an appropriate and important clinical objective, especially in light of the fact that this distress may be extended. The value of supportive therapy should not be overlooked because of the apparent resilience of children. Conclusion

While these data support the argument that most children exhibit a relatively swift return to "normal" levels of adjustment after a parent's death, it is important to remember that there may be long-term consequences of the loss or symptoms that manifest themselves later in the bereavement process than the period assessed here. For example, delayed grief responses (i.e., complicated mourning) have been observed in adults 2 to 3 years after the loss of a loved one (Worden, 1991). In addition, studies of adults who suffered the loss of a parent in childhood suggest they may evidence poorer adult adjustment than those who did not experience such a loss (Lloyd, 1980; Osterweis et al., 1984). Thus, children who appear well adjusted in the short-term may remain at risk for later emotional problems. This possibility suggests the importance of longitudinal research and long-term follow-up on bereaved children.

REFERENCES FrisradMA, Jedel R, Weller RA,Weller EB (I 993), Psychosocial functioning in children after rhe death of a parent. Am J PsychitltlY 150:511-513 Kovacs M (1992), Children j. Depression lnuentory. North Tonawanda, NY: Multi-Health Systems

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Lloyd C (1980), Life events and depressive disorder reviewed. Arch Gen Psychiatry .37:529-535 Osrerweis M, Solomon F, Green M, cds (1984), Bereavement: Reactions, Consequences and Care. Washington, DC: National Academy Press Sanchez L, Frisrad M, Weller RA, Weller EB, Bowes J (1994), Anxiery in acutely bereaved prepubertal children. Ann Gin Psychiatry 6:39-42 Siegel K, Mesagno 1'1', Karus D, Christ G, Banks K, Moynihan R (1992), Psychosocial adjustment of children with a terminally ill parent. JAm Acad Child Adolesc Psychiatry 31 :327-333 Siegel K, Weinstein L (1983), Anticipatory grief reconsidered. J Psychosoc Oncoll:61-71 Silverman PR, Worden JW (1992), Children's reactions in the early months after the death of a parent. Am J Orthopsychiatry 62:93-104 Sood B, Weller EB, Weller RA, Fristad MA, Bowes JM (1992), Somatic complaints in grieving children. Compr Ment Health Care 2:17-25

Spielberger CD, Edwards CO, Lushcnc RE, Montuori J, Paltzck 0 (1973), STAIC Preliminary Manual. Palo Alto, CA: Consulting Psychologists Press Spielberger CD, Gorsuch RL, Lushcnc R, Vagg Plc, Jacobs GA (1983), Manuals fir the State-Trait Anxiety Inventory (Form Palo Alto, CA: Consulting Psychologists Press Van Eerdewegh MM, Bierei MD, Prilla RH, Clayton pJ (1982), The bereaved child. Br J Psychiatry 140:23-29 Weller RA, Weller EB, Fristad MA, Bowes JM (1991), Depression in recently bereaved prepubertal children. Am J Psychiatry148: 1536-1540 Worden JW (1991), Grief Counseling and Grief Therapy: A Handbook fir the Mental Health Practitioner. New York: Springer Publishing

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Call for Submissions The new Clinical Perspectives Section of the}ournal reflects an attempt to acknowledge formally the value of clinical observations, perspectives, wisdom, guidelines, and pearls. Submissions should be short (750 to 1,500 words), concise, clear, pithy, and focused. Clinical Perspectives reflects the Journal's continuing attempt to provide the latest information for clinical practice in addition to building a knowledge base for the field grounded on formal research. We encourage questions, comments, and submissions sent to Michael Jellinek, M.D., Assistant Editor, Clinical Perspectives, Massachusetts General Hospital, 15 Parkman Street-ACC 725, Boston, MA 02114.

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