risk factors for psychological maladjustment of parents of children with cancer

Rrsk Factors for Psychological Maladjustment of Parents of Children With Cancer

JOSETTE E.H.M. HOEKSTRA-WEEBERS, M.A., JAN PC. JASPERS, PH.D., WILLEM A. KAMPS, PH.D., AND ED C. KLIP PH.D.

ABSTRACT

Objective: To examine risk variables for future, more immediate, and persistent psychological distress of parents of pedi-

atric cancer patients. Method: Parents ( n = 128) completed questionnaires at the time of diagnosis (T,) and 12 months later

(T2). Multiple regression analyses were performed using the following as predictors: demographics, illness-related vari-

ables, other life events, personality, coping styles, and social support. Results: Trait anxiety was the strongest predictor of both fathers’ and mothers’ future distress. Changes in trait anxiety during the year also accompanied changes in both par-

ents’ levels of distress. Additional prospective predictors for fathers were the coping style “social support-seeking” and dis-

satisfaction with support. Dissatisfaction with support also had short-term effects for fathers. An additional prospective

predictor for mothers was the number of pleasant events they had experienced prior to diagnosis, while a short-term effect

was found for performance in assertiveness. No predictors for the persistence of distress were found. Conclusions: These

results underscore the importance of personality anxiety in predicting parents’ risk for adjustment diff iculties associated with

the experience of cancer in one’s child. An additional risk factor for fathers was social support. For mothers, previously expe-

rienced life events and the frequency of assertive behavior were additional risk factors. J. Am. Acad. Child Adolesc.

Psychiatry, 1999,38(12):1526-1535. Key Words: risk factors, parental adaptation, childhood cancer.

The diagnosis of cancer in one’s child is a traumatic life event which provokes high levels of psychological distur- bance in parents (Hoekstra-Weebers et al., 1998; Kupst and Schulman, 1988). While some studies indicated that parents eventually coped well and that they could carry out their daily tasks adequately (Kazak and Meadows, 1989; Kupst and Schulman, 1988), others found that parents continued to suffer from depressive symptoms (Brown et al., 1993). Parents frequently reported feeling uncertain and lonely even long after treatment had ceased (Van Dongen-Melman et al., 1995). Continuing concerns about the development of their child and the potential decrease in future possibilities have been reported

Accepted June 29, 1999. From the Department o f Medical Psychology (Ms. Hoekstra- Weebers, Dr.

Jaspers, Dr. Klipl and the Division of Pediatric Oncology (Dr. Kamps), University Hospital Groningen, the Netherlands.

This study wasfunded by the Dutch Cancer Society and the Pediatric Oncology Foundation Groningen. The authors thank Tom Snijders, Ph.D., f i r statistical consultation.

Correspondence to Ms. Hoekstra- Weebers, Medical Psychology, University Hospital, PO. Box 30.001, 9700 RB Groningen, the Netherlands; e-mail: h.j.hoekstra@wxs. nl.

0890-8567/99/3812-1526O 1999 by the American Academy of Child and Adolescent Psychiatry.

(Greenberg and Meadows, 1992). An explanation for the discrepancy in research findings could be that some researchers focus on pathology while others stress the adjustment capacity of normal parents in an abnormal situation (Kupst et al., 1995). They concluded that parents function well with time “given the situation.” How- ever, they estimated that 25% to 33% of the parents do develop problems. This still considerable percentage, combined with the great individual variation in adjustment between parents, reflects the need for research to increase our understanding of the risk and protective factors in parents of children with cancer. This may help early identification of at-risk parents.

Several demographic risk factors have been mentioned. At increased risk were mothers, younger parents, parents of younger children, parents with lower occupational level, parents with less education, parents with lower socioeconomic status and lower income, and those with- out a religious affiliation (Barbarin and Chesler, 1986; Koocher and O’Malley, 198 1; Kupst and Schulman, 1988; Morrow et al., 1984; Sawyer et al., 1993; Speechley and Noh, 1992; Van Dongen-Melman et al., 1995; Veldhuizen and Last, 1991). Other variables were co-occurrence of

1526 J . AM. ACAD. CHILD ADOLESC. PSYCHIATRY, 38:12 , DECEMBER 1999

MALADTUSTMENT OF PARENTS OF CHILDREN W I T H CANCER

other stressors (Kupst and Schulman, 1988) and illness- related variables (relapse, longer duration of treatment) (Veldhuizen and Last, 1991).

Very little is known about the relationship between parents’ personality and their psychological adjustment. A recent study showed that trait anxiety is a risk factor for both fathers and mothers (Kazak et al., 1998). Armstrong (1992) stressed the importance of social skills. Self-esteem has been mentioned as a possible causal agent for adult patients’ adjustment to cancer (Curbow and Somerfield, 1991).

Coping strategies used by parents have received much attention. Strategies used include “healthy denial,” open communication, social support-seeking, living in the present, seeking information, problem-solving, maintaining emotional balance, and reliance on a consistent philosophy of life or religion (Barbarin and Chesler, 1986; Koocher and O’Malley, 1981; Kupst and Schulman, 1988; Spinetta et al., 1988). The general literature on coping shows that problem-solving is used less in situations considered by the respondent to be unchangeable and that emotion- focused coping styles are more common when stressors are perceived as uncontrollable (Folkman et al., 1986).

Studies indicate that social support effectively buffers the detrimental effects of diagnosis and treatment of childhood malignancies on parents (Magni et al., 1986). Support was positively related to parental adjustment during and after hospital treatment (Kupst and Schulman, 1988; Morrow et al., 1984), and it was negatively related to anxiety and depression (Speechley and Noh, 1992). “Help” can also have a negative impact (Chesler and Barbarin, 1984).

The literature shows that many factors may be influen- tial in predisposing positive adaptation in parents over time. However, the comparative strengths or predomi- nance of these factors have not been determined (Kupst, 1993). This study explored the relationship between several risk factors and their relative power, using multivar- iate analysis. Figure 1 presents a model of potential risk variables examined in this study. The model is based on the theory of stress and coping developed by Lazarus and Folkman (1984). In their theory, outcome is a result of the interaction between the stressful event, the individual’s appraisal of the event, hidher resources (psychological, social, financial), and the coping strategies used to manage the situation. The stress-coping model has been extended by including variables that are character- ized by stability (demographics, disease parameters at diagnosis, and personality) and by including social support that is considered to change depending on the stress situation, much like the coping strategies.

The objectives of this prospective study were to investigate ( I ) early factors contributing to the level of psychological distress of parents I year after diagnosis, (2) factors that accompany change (these factors contribute to the more short-term experience of distress at 1 year), and (3) factors that contribute to the persistence of distress.

METHOD

SUBJECTS

Subjects were the parents of all children with newly diagnosed cancer in the Division of Pediatric Oncology, University Hospital Groningen, the Netherlands, during a period of 27 consecutive months. Parents of children with a life expectancy of only a few

Antecedent variables/ Resources

Demographics Life events Personality

short-term distress continuation of distress Illness variables

Time

Fig. 1 Model of factors potentially influencing parental adjustment.

J . A M . ACAD. CHILD ADOLESC. PSYCHIATRY, 38:12, DECEMBER 1999 1527

HOEKSTRA-WEEBERS ET AL

weeks and parents who did not speak Dutch were not included. Of the 192 parents of 98 children who were eligible, 164 parents of 87 children participated (response 85.4%). Nineteen parents were not approached for reassessment because their child did not survive the 12 months. Seventeen parents refused. Thus, response at T2 was 128 (66.7%) of the original sample of 192 parents. Participants were 66 mothers and 62 fathers. They were all married/cohabiting with the exception of one widow. Mean age was 35.9 (SD 5.5), range 21 to 53 years. Educational level ranged from 1 (elementary school only) to 7 (university degree), with a mean of 3.4 (SD 1.5). Sixty-four percent had a religious affiliation. Parents had the same Dutch ethnic back- ground. The children numbered 41 boys and 25 girls, mean age 6.5 (SD 4.7), range 0 to 16 years. Medical diagnoses included leukemias (n = 28), brain tumors ( n = 8), malignant lymphomas ( n = 12), Wilms tumor ( n = 6), soft tissue and bone sarcomas ( n = 6), neuroblastoma (n = 2), germ cell tumors ( n = 2), and hepatoblastoma ( n = 2). Chil- dren were assigned by their pediatrician to l of 3 prognostic groups based on type and stage of their malignancy (Pizzo and Poplack, 1993) at diagnosis. The first group consisted of children with an estimated survival chance of 275% ( n = 26), the second had a chance of 25% to 75% ( n = 34), and the third a chance of 525% (n = 6). The number of other children in the family ranged from 0 to 6, mean =

1.7, SD = 1.2. There were no significant differences beween the parents who completed the study ( n = 128) and those who did not ( n =

36) on these demographic and illness variables, except for the variable prognosis (x’ = 16.80, p < ,001). Fewer of the parents of children with a survival chance of 125% completed the study, mainly because their children did not survive the year.

PROCEDURE

The pediatric oncologist informed parents about the study, and the researcher asked them to participate. Informed consent was obtained. Participants completed questionnaires at the time of diagnosis (TI) and 12 months later (T2). Fathers and mothers were instructed to complete the questionnaires separately. T, assessment took place at the hospital. T, questionnaires were completed at home.

MEASURES

Psychological Distress

The 12-item version of the General Health Questionnaire (Goldberg and Williams, 1988), a self-report measure of psychiatric symptoms commonly used for screening, is used in this study as an overall index of psychological distress. The scoring scale ranges from 0 to 12. The questionnaire’s psychometric properties are highly satisfactory (Koeter and Ormel, 1991). Reliability u values in the current study were .86 at T, and .91 at T2.

Predictor Variables

Demogrdphirs. Parents’ ages, gender and age of child, parents’ educational level, number of other children in the family, and religious affiliation (yes/no) were included. Occupational status was not included because of its high correlation with educational level (. = 0.64 in this study) and because 67% of the mothers were unemployed.

Illness-Related vdriables. At the time of diagnosis, children were placed in 1 of 3 prognostic groups. At T2, children were placed in 1 of 3 response-to-treatment groups by their pediatrician. The first group included children who were in remission, who had experienced minor or no complications, and whose survival chance at diagnosis was greater than 25% ( n = 50). The second group consisted of chil-

dren in remission but who had had a number of complications or a survival chance at diagnosis of less than 25% ( n = 12). The third group were children not in remission, who had relapsed, or who had been hospitalized frequently because of serious complications (n = 4).

Life Events. The 59-item Questionnaire of Recently Experienced Events (Willige et al., 1985) was used. Respondents were asked to indicate whether they had experienced a life event in the domains of health/illness/death, relations with family/friends/acquaintances, work, finances, and a category involving personal circumstances such as moving, being involved in an accident, or finishing an educational course. The sum was calculated of pleasant (range in the current study 0-6) and unpleasant events (range 0-7) that parents had experienced during the year before (TI) or after the diagnosis (T,) and that were unrelated to their child’s illness.

Personality. The State-Trait Anxiety Inventory (Spielberger, 1983), Trait version, measures relatively stable individual differences in prone- ness to anxiety. Dutch norm-group data, as well as information about reliability and validity, are available (Ploeg et al., 1981). The LX values in this study were high: .93 on both measurements.

The Rosenberg Self-Esteem Scale (Rosenberg, 1989) is a 10-item questionnaire with 5 positively and 5 negatively worded questions. This questionnaire has been used repeatedly in the Netherlands (De Haes, 1988). Cronbach u values in the present study were high: .88 and .87.

The Scale for Interpersonal Behavior (Arrindell and Ende, 1985) is a Dutch multidimensional, 25-item instrument that assesses both tension associated with assertiveness in specific situations and the frequency of engaging in a specific assertive response. Respondents are asked first to indicate on a 5-point scale ranging from “not at all tense” to “extremely tense” how much discomfort they experience in a given situation (distress) and second to indicate on the 5-point scale ranging from “I never do” to “I always do” how often they engage in that situation (performance). Cronbach LX values in this study were high: .93 for the distress and .92 for the performance subscale.

Coping. Coping was assessed with the Utrecht Coping List (Schreurs et al., 1993). This self-report questionnaire covers the following 7 con- ceptually different coping styles: active problem-focusing (7 items, u values in the present study were .77 and .83), palliative reaction pattern (8 items, u values = .76 and .70), avoidance behavior (8 items, u values = .69 and .79), seek social support (6 items, LX values = .81 on both measurements), passive reaction pattern (7 items, LX values = .68 and .75), expression of emotions (3 items, LX values = .51 and .67), and comforting cognitions (5 items, LX values = .57 and .63). The Utrecht Coping List can be used to measure both coping with stressors in general and coping with specific situations. Parents were asked to respond in connection with their child‘s illness. Answers were given on a 4-point Likert scale, ranging from “never/seldom” to “very often.”

Social Support. Social support was measured with the Social Support List Interactions (SSL-I) and Discrepancies (SSL-D). This self-report questionnaire has been designed and validated in the Netherlands. It has good psychometric properties (Sonderen, 1993). The questionnaire measures the amount of support the respondent indicates he/ she receives from hidher social network (SSL-I), and hidher degree of dissatisfaction with support (SSL-D). The SSL-I and SSL-D cover the same 34 items. Cronbach LX values in the current study for the SSL-I and the SSL-D were high: .92 and .94, and .94 and .95, respectively, for the 2 measurements.

STATISTICAL ANALYSIS

First, risk factors, measured at the time of diagnosis, were used to predict future psychological distress. The effect of distress at the time of diagnosis on subsequent distress was partialed by entering initial

1528 J . AM. ACAD. C H I L D ADOLESC. PSYCHIATRY, 38 .12 , DECEMBER 1999

MALADJUSTMENT OF PARENTS OF CHILDREN WITH CANCER

1. AM. ACAD. C H I L D ADOLESC. PSYCHIATRY, 38:12, DECEMBER 1999

distress first. In this causal analytical model, variables with long-term effects are identified. Four separate hierarchical multiple regression analyses were conducted to investigate the incremental relative contribution of the potential risk variables in predicting T 2 d’ Istress. Potential predictors were first the antecedent variables (demographics, life events prior to diagnosis and prognosis), second the personality characteristics, third the coping styles, and fourth the social support measures. A final hierarchical multiple regression was calculated, entering those predictor variables that were significantly associated with T, distress in the former analyses to determine the strongest predictors among these variables.

In the second series of analyses, T, psychological distress was predicted from T, predictor risk variables while controlling for initial distress and TI risk variables. This allows variables that have short- term effects on parental distress to be identified. Again, 4 separate hierarchical multiple regression analyses were performed, followed by a final analysis with only the significant predictors.

Finally, risk factors for the persistence of parental distress were examined. Predictors of psychological distress at follow-up were the risk variables as measured at TI and the interactions of TI risk variables with T, distress. This test answers the question whether the persistence of psychological distress was conditional on the level of the risk factor at TI (Cohen and Brook, 1987).

Analyses were performed for fathers and mothers separately because dependency may exist in data gathered from couples.

RESULTS

Psychological Distress

Parental psychological distress at the time of diagnosis (mean fathers = 5.8, SD = 3.1; mean mothers = 6.4, SD =

3.0) was higher than that of a norm group, a representa- tive, randomly selected community group ( n = 3,232; mean men = 1.1, SD = 1.9; mean women = 1.2, SD = 2.0 [Koeter and Ormel, 19911; t test for differences between means, all p < .OO 1 ) . Distress declined significantly with time (paired samples t test, fathers T = 6.48, p < .001; mothers T= 7 . 5 3 , ~ < .001), but the mean score of the parents at T2 (mean fathers = 2.7, SD = 3.4; mean mothers =

2.9, SD = 3.6) was still higher than that of the norm group (t test for difference between means, all p < .OO 1 ) . Test-retest effect was r = 0.37 for both fathers and mothers. This means that 14% of the variance in distress at 12 months was explained by distress at the time of diagnosis (Table 1) .

Future Distress

The results for the prospective analyses are presented - -

in Table 1. Beta values reported are standardized regression weights, partialed for initial distress. The 4 separate hierarchical multiple regression analyses showed the following results. The antecedent variables did not account - for a significant increment in the explained variance for either fathers or mothers. Personality characteristics,

coping styles, and social support variables accounted for a significant increment in explained variance for fathers’ future distress but not in that for the mothers. Eight predictor variables had significant unique effects on fathers’ future distress and 5 on that of the mothers.

A final hierarchical multiple regression analysis with these significant predictor variables was performed. Initial distress was entered first. Then the stable significant demographic and personality variables (unpleasant events, trait anxiety, distress in assertiveness, self-esteem) were entered in the analysis of the fathers. Trait anxiety appeared to be the most powerful predictor of the later development of fathers’ psychological distress (r2change = 0.18, Fchange =

1 4 . 6 9 , ~ = .0003). The remaining 3 variables did not contribute significantly. The third step involved the changeable variables: coping styles (avoidance, social support- seeking, expression of emotions) and the support variable (dissatisfaction with support). Dissatisfaction with support (r2 change = 0.08, F change = 8.04, p = .0066) and the coping style “social support-seeking” ( r2 change = 0.06, F change = 5.65, p = .0212) accounted for a significant increment (total r2 = 0.48).

The analysis of the mothers showed that the stable variables-number of pleasant events (r2change = 0.08, F change = 6.09, p = .0164) and trait anxiety ( r2 change =

0.05, Fchange = 4 . 5 0 , ~ = .0380)-accounted for a significant increment in the prediction, while the coping style “social support-seeking” and the support variables (quantity of and dissatisfaction with support) did not account for a significant contribution (total r2 = 0.27).

Short-Term Distress

The analyses for short-term distress are shown in Table 2. The p coefficients reported are standardized regression weights, partialed for TI distress and TI risk variables. Table 2 should be read as a continuation of Table 1.

First, we examined whether response to treatment and the number of events parents had experienced during the year after the diagnosis were related to T2 distress. This was not found.

The remaining 3 hierarchical multiple regression analyses showed that T2 personality characteristics and coping styles produced a significant increment of the explained variance in short-term distress in both parents, while the social support variables accounted for a significant increment in that in the fathers only. Changes in 5 predictor variables were significantly and independently associated with changes in distress in each parent.

1529

H O E K S T R A - W E E B E R S E T AL.

TABLE 1 Potential Predictors of Future Distress

Fathers ( n = 62) Mothers ( n = 66) Variables P R2 AR2 R’ch Fch p P R2 AR2 R2ch Fch p

Initial distress .37 0.14 0.12 0.14 8.97 ,0041 .37 0.14 0.13 0.14 10.12 .0023

Antecedent variables Age of parent Age of child Gender of child Education Other children Religion Unpleasant life events Pleasant life events Prognosis

0.30 0.13 0.16 1.08 ,3963 -.05 -. 16 -.03

.I1 -.05 -. 10

-.02 -.04

.30*

0.31 0.17 0.17 1.30 .2567 -.06 -.04

.13 -.03 -.05 .ll .14 .28*

-. 10

Personality characteristics 0.35 0.29 0.22 4.40 .0038 0.23 0.16 0.09 1.70 ,1634 Trait anxiety .50*** .29* Self-esteem .29* .21 Distress in assertiveness .31* .08 Performance in assertiveness .I0 .02

Coping styles Active problem-focusing Palliative reaction pattern Avoidance Social support-seeking Passive reaction pattern Expression of emotions Comforting cognitions

0.36 0.26 0.23 2.53 ,0264 0.28 0.18 0.14 1.56 ,1678 -.03 -.06

.14 .02

.25* .20

.25* -.25*

.19 .22

.34** .21

.07 -.03

Social support 0.32 0.28 0.18 7.42 ,0014 0.22 0.18 0.08 2.89 .0631 Quantity of support -.07 -.23* Dissatisfaction with support .44*** .23*

Note: AR2 = adjusted R2; ch = change. * p < .05; **p < .01; ***p < .001.

A final hierarchical multiple regression analysis with all significant predictors was performed (Table 3). Initial distress and the significant prospective predictors were entered first in the analysis of the fathers. The T1 variables to be controlled for were then entered. The fourth step involved the change in trait anxiety. Increase in anxiety intensity level accounted for a significant increment of r2 change = 0.11 in the variance of fathers’ distress at 12 months. Step 5 included the coping styles “avoidance,” “passive reaction pattern,” “expression of emotions,” and dissatisfaction with support. Changes in dissatisfaction with support significantly increased the explained variance of r2 = 0.04. When only the significant predictors were entered (TI distress, trait anxiety, coping style “social support-seeking,’’ and dissatisfaction with support; and T2 trait anxiety and dissatisfaction with support), we found a high r2 = 0.66.

The analyses for the mothers showed that of the 4 personality variables entered in the fourth step, changes in trait anxiety (r2 change = 0.23) and performance in assertiveness ( r2 change = 0.04) accounted for a significant increment in the explained variance. The coping style “passive reaction pattern,” entered in the last step, did not produce a significant gain. The inclusion of significant predictors only (TI distress, trait anxiety, performance in assertiveness, and pleasant events prior to diagnosis; and T2 trait anxiety and performance in assertiveness) revealed that these variables explained 57% of the variance in mothers’ distress.

The statistical tests used to identify variables predictive of changes in distress suggest that change in these risk variables caused change in the distress variable. However, the effect may have been in the opposite direction, mean-

1530 J . AM. ACAD. C H I L D ADOLESC. PSYCHIATRY, 38:12, DECEMBER 1999


ing that changes in distress caused changes in the risk variables. Therefore, the effects of distress at the time of diagnosis on the risk variables as measured at T2 were examined, partialing the TI risk variables. The results indicated that there was no effect of TI distress on these risk factors 1 year later, when parental earlier use was controlled. So the above-mentioned personality characteristics, coping styles, and dissatisfaction with support predicted psychological distress and not vice versa.

Continuation of Distress

Because of the number of variables in the study and the unavoidable interdependency between them, only risk variables with a main effect on long-term distress were included (Cohen and Brook, 1987). Predictors for fathers were trait anxiety, the coping style “social support-seeking,’’ and dissatisfaction with support; for mothers, predicators were trait anxiety, performance in assertiveness and pleasant events prior to diagnosis, and the interactions of these variables with T, distress. The contribution of the interaction variables was not significant. So, no predictors for the persistence of distress were found.

DISCUSSION

The aim of this study was to examine risk factors for the development of psychological distress in parents of pediatric cancer patients. We focused on the future development, the short-term development, and the continuation of distress. Predictors with long-term and more direct effects were found. However, risk factors for the persistence of parental distress were not identified. Lazarus and Folkman’s stress-coping-outcome model has been used as a framework to categorize stable predictor variables (demographics, disease parameters, prior life events, personality) and variables that are likely to change as a con- sequence of the varying conditions of the stressor (coping strategies and social support). Analyses were carried out in such a way that the effects of the changeable variables were examined while the stable variables were controlled.

The current study showed that personality, coping styles, and social support accounted for a significant increment in the prediction of fathers’ future distress beyond initial symptom level. For mothers, there was no significant gain showing that these variables do not play as important a role as they do for fathers. It may very well be

TABLE 2 Short-Term Effects of Changes in Potential Predictors

Fathers Mothers

Variables p R2 AR2 R2ch Fch p p R2 AR2 R2ch Fch p

Other events and response to treatment 0.36 0.15 0.06 1.36 ,2684 0.33 0.14 0.02 0.46 .7125 Unpleasant events .23 .14 Pleasant events .I4 .ll Response to treatment .12 .07

Personality characteristics 0.55 0.47 0.20 5.58 .0009 0.56 0.48 0.34 9.99 .OOOO Trait anxiety .73*** .SO*** Self-esteem .21 .36* Distress in assertiveness .34 .4 1 ** Performance in assertiveness -.06 -.41**

Coping styles Active problem-focusing Palliative reaction pattern Avoidance Social support-seeking Passive reaction pattern Expression of emotions Comforting cognitions

0.60 0.46 0.24 3.62 -.08

.10

.37** -. 10

.52***

.34**

.18

.0038 0.50 0.34 0.22 2.95 .0118 -.31

.25

.13

.50***

.03

-.07

-.07

Social support 0.45 0.40 0.13 6.34 .0034 0.26 0.19 0.04 1.63 ,2043 Quantity of support -. 19 -.07 Dissatisfaction with support .42*** .25

Note: AR2 = adjusted R2; ch = change. * p < .05; * * p < .01; ***p < .001.

J . AM. ACAD. CHILD ADOLESC. PSYCHIATRY, 38: 12, DECEMBER 1999 1531

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that other factors influence mothers’ future levels of stress more strongly than the variables chosen in this study.

The strongest predictor of both the long-term and the short-term psychological adjustment appeared to be a personality characteristic, which is in line with Kazak et al. (1998). Parents scoring high on trait anxiety were more at risk. It may be argued that trait anxiety is con- founded with psychological distress. However, the results showed that this variable accounted for a significant gain in the proportion of explained variance beyond initial symptom level. This indicates that trait anxiety is a different construct than psychological symptomatology.

In contrast to the fathers, changes during the year in the different personality variables all affected mothers’ adjustment over time. A second significant predictor personality variable for mothers was assertiveness. Mothers who used assertive behaviors less frequently with time were at risk. Although considered stable characteristics of a person, under the condition of this severe stressor there appear to be changes in personality that affect adjustment. Anxiety intrinsic to personality and assertiveness can therefore be considered appropriate targets for inter- ventions. Other empirical reports on the effects of personality on the psychological adaptation of parents of pediatric cancer patients are, to our knowledge, not exis- tent. This study shows that research in this area has been unjustly neglected.

Social support had unique long-term effects on the future distress of fathers. First, fathers whose coping style in the time shortly after diagnosis involved seeking more support, possibly in an attempt to cope with their emotional distress, were at increased risk for the later development of psychological problems. Second, fathers who were more dissatisfied with the support they were receiv- ing at diagnosis and those who grew more dissatisfied with time were at increased risk. Seeking more support does not necessarily mean more satisfaction with support. Apparently, there were fathers who were not getting the support they needed. The results underline how com- plex the mechanism of social support is and how important it is to distinguish quantity from quality. It may be that it is not so much a lack of support that is relevant to the fathers, as suggested by Speechley and Noh (1992), but more a lack of quality in support.

Fathers who sought more support at diagnosis were at higher risk for the future development of psychological distress. In contrast, mothers who sought less support at diagnosis were at higher risk. Differential beneficial effects

of support for fathers and mothers were also observed by Speechley and Noh (1992). These results indicate that intervention efforts to support parents will be more effec- tive if they are targeted to their specific needs.

While unpleasant events occurring before diagnosis had long-lasting negative effects on fathers’ adjustment, pleasant events had long-lasting negative effects on mothers’ adjustment. Positive associations between positive events and increased symptomatology were reported also in a Dutch community sample (Sanderman, 1988). It has been recognized that events that are pleasant/positive, at the same time, can be stressful (for example, job pro- motion) as adjustment to life change is needed. But it may also be that in the case of childhood cancer, mothers feel guilty that they were involved in pleasant events at the time that their child’s cancer may have started grow- ing. Being otherwise occupied may have prevented them from correctly estimating the seriousness of their child‘s physical signals. Events occurring during the first year of treatment were not related to parental distress. This is not consistent with an earlier study (Kupst and Schulman, 1988) that showed that concurrent life stresses were associated with psychological maladjustment.

None of the demographic characteristics of parents or children measured in this study were among the predictor variables. This is in contrast to other research (Kupst, 1993; Sawyer et al., 1993; Veldhuizen and Last, 1991). The data in the present study, however, have been analyzed prospectively, whereas in the other studies the data were analyzed cross-sectionally. Objective medical data were also not associated with parental psychological adjustment, in consonance with a recent study (Kazak et al., 1998).

The model in Figure 1 was used as a guide in the inves- tigation of the relationship between the traumatic stressor of cancer in a child and parental psychological outcome, examined in 3 separate ways. However, the model does not take into account the possibility that family context variables also might enhance or reduce the individual parent‘s ability to adjust. Family functioning has been found to predict the adjustment of the parents and the ill child (Kazak et al., 1997; Varni et al., 1996). Therefore, such variables should be included in the model.

Limitations

Parents whose children did not survive the 12-month study period were not included in follow-up. The parents on T2 were parents whose children were surviving, and in most cases children were doing well. This may explain

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HOEKSTRA-WEEBERS E T AL.

why response to treatment did not have any predictive power. A second limitation relates to the sample size. Cancer in children is a rare disease (Miller et al., 1995). Although the number of participants in this study was relatively large compared with other studies reviewed in this report, analytical techniques such as path analysis were not possible. The steps taken in the statistical analyses are an attempt to cope with the problem of the ratio of sample size to number of variables and partially solve the matter. However, findings with a significance levelp > .O1 should be interpreted as suggestive.

Strengths of the study were that fathers and mothers were assessed separately and that so many fathers were retained in the study. The study design was prospective, which allowed us to make inferences about causality and to study change over time. Furthermore, this study was the first attempt in our knowledge to combine demographics, personality, illness-related variables, coping styles, and social support in one model and to examine the relative predictive power of these variables on the psychological adaptation of parents to the illness and consequent treatment of their child with time. Most important in deter- mining the extent to which parents adjust to this extremely stressful life crisis was the personality characteristic trait anxiety. Social support had long-term as well as more prox- imal effects on fathers’ distress. Pleasant events prior to diagnosis had a long-lasting effect on mothers’ distress, while assertiveness contributed to their short-term distress.

Clinical Implications

The results of this study may help health care professionals to identify parents at risk for psychological maladjustment at an early stage. Attention should be given to parents scoring high on personality anxiety. Preventive intervention efforts for fathers could be targeted on iden- tifying their specific needs for support and on determin- ing how to elicit that support best. Mothers may benefit from social skills training.

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Differences in Preferences for Neonatal Outcomes Among Hedth Care Professionals, Parents, and Adolescents. Saroj Saigal, MD, FRCP, Barbara L. Stoskopf, RN, MHSc, David Feeny, PhD, William Furlong, MSc, Elizabeth Burrows, MBA, Peter L. Rosenbaum, MD, FRCP, Lorraine Hoult, BA

Context: In neonatal intensive care, parents make important clinical management decisions in conjunction with health care professionals. Yet little information is available on whether preferences of health care professionals and parents for the resulting health out- coma differ. Objective: To measure and compare preferences for selected health states from the perspectives of health care professionals (ie, neonatologists and neonatal nurses), parents of extremely low-birth-weight (ELBW) or normal birth-weight infants, and adolescents who were either ELBW or normal-birth-weight infants. Desip: Cross-sectional cohort study. SettingandPartic+ants: A total of 742 participants were recruited and interviewed between 1993 and 1995, including 100 neonatologists from hospitals throughout Canada; 103 neonatal nurses from 3 regional neonatal intensive care units; 264 adolescents (aged 12-16 years), including 140 who were ELBW infants and 124 sociodemographically matched term controls; and 275 parents of the recruited adolescents. Main Outcome Measure: Preferences (utilities) for 4 to 5 hypothetical health states of children were obtained by direct interviews using the standard gamble method. Results: Overall, neonatologists and nurses had similar preferences for the 5 health states, and a similar proportion rated some health states as worse than death (59% of neonatologists and 68% of nurses; P = 20) . Health care professionals rated the health states lower than did parents of ELBW and term infants (P < .001). Overall, 64% of health care professionals and 45% of parents rated 1 or more health states to be worse than death (P < ,001). Differences in mean utility scores between health care professionals and parents and adolescent respondents were most pronounced for the 2 most severely disabled health states (P < ,001). Conclusions: When asked to rate the health-related quality of life for the hypothetical conditions of children, health care professionals tend to provide lower utility scores than do adolescents and their parents. These findings have implications for decision making in the neonatal intensive care unit. JAMA 1999;28 1: 199 1-1997. Copyright 1999, American Medical Association.

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risk factors for psychological maladjustment of parents of children with cancer

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