Journal of Pediatric Psychology, Vol. 25, No. 2, 2000, pp. 79-91
© 2000 Society of Pediatric Psychology
Predictors of Distress in Parents of Children With Cancer: A Prospective Study
Social Policy Research Unit, University of York
All correspondence should be sent to Patricia Sloper, Social Policy Research Unit, University of York, Heslington, York Y010 5DD, United Kingdom.
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Abstract |
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Objective: To investigate levels of psychological distress in parents of children with cancer and relationships between distress and measures of illness variables, appraisal, psychosocial resources and coping strategies.
Methods: Questionnaires were completed by 68 mothers and 58 fathers at 6 (Time 1) and 18 (Time 2) months postdiagnosis.
Results: High levels of distress for 51% of mothers and around 40% of fathers were apparent at both time points, with little change over time. For mothers, their appraisal of the strain of the illness, and their own ability to deal with it, and family cohesion were predictive of distress, both concurrently and prospectively, and, at Time 1, greater use of self-directed coping strategies was related to higher levels of distress. For fathers, risk factors of employment problems (Time 1) and the number of the child's hospital admissions (Time 2) were significant, along with appraisal and family cohesion.
Conclusions: Continuation of high levels of distress over time points to the importance of identification of those at risk at an early stage and provision of ongoing support. Implications for such support are discussed.
Key words: childhood cancer; parent adjustment; risk factors; stress; coping; mothers; fathers.
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Introduction |
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The life-threatening nature of childhood cancer and its invasive treatment present both practical and emotional stresses for family members. High levels of parental distress have been found in many studies both at the time of the diagnosis and early stage of treatment (Kupst, 1992
) and also persist
over one or more years (Sawyer, Antoniou,
Toogood, Rice, & Baghurst, 1993). The sources of such distress
are varied and a number of potential stressors have been suggested. Kazak et
al. (1995) note that parental
distress regarding treatment procedures remained high over the course of the
lengthy treatment for leukemia. The course and treatment of the illness varies
between different cancers and between different children. It may be expected
that more lengthy treatment, more frequent and longer hospitalization, and
relapse would all increase the risk of parental distress. The burden of care
during the treatment phase can result in detrimental effects on employment and
financial difficulties (Lansky et al.,
1979; Sloper,
1996a). These effects may add to the strain on families. It has
also been demonstrated that families of children with cancer have to deal with
a number of other concurrent stressors, some linked to the illness and others
independent of it (Kalnins, Churchill,
& Terry, 1980). All these sources of stress are likely to act
as risk factors, increasing the likelihood of high levels of parental distress
during treatment. Even when treatment is completed, parents have to face the
difficulties of living with uncertainty and the possibility of recurrence over
the longer term (Koocher & O'Malley,
1981). Recent studies have suggested that some parents and
children show symptoms of posttraumatic stress disorder continuing a number of
years after cessation of treatment (Kazak
& Barakat, 1997; Stuber et
al., 1994), but others find little evidence of distress after
treatment (e.g., Brown et al.,
1992).
However, not all parents of children with cancer show high levels of
distress. Considerable variation within and between studies is apparent, and
the relationship between potential sources of stress and outcome is by no
means clear. The few prospective studies of the relationship between earlier
sources of stress and problems continuing after treatment have often been
based on small samples and a limited range of measures. Nevertheless, some
interesting findings emerge. Kazak and Barakat
(1997) found significant
associations between parenting stress during treatment and anxiety after
treatment was completed in mothers and fathers of children with leukemia.
Stuber et al. (1994) found
correlations between mothers' posttraumatic stress symptoms at an average of 5
years after cessation of treatment and children's appraisal of treatment
intensity, duration of treatment, and mothers' trait anxiety. For fathers,
only trait anxiety was a significant variable. It appears that both stresses
associated with treatment and influences within the family system are
important for longer term adjustment
(Dolgin & Phipps,
1996).
Evidence on differences between mothers and fathers is inconclusive. Some
studies report mothers to be more at risk of negative outcome than fathers
(e.g. Dahlquist, Czyzewski & Jones,
1996; Sawyer et al.,
1993), but others find no differences (e.g.,
Speechley & Noh, 1992). In
a number of studies, tests of significance of any apparent differences are not
reported (e.g. Kazak & Barakat,
1997; Stuber et al.,
1994). Clearly, further investigation is needed to identify
variables associated with varying levels of parental distress for both mothers
and fathers and to ascertain the roles of risk factors and of potentially
modifiable factors associated with resistance to distress for both mothers and
fathers (Varni, Katz, Colegrove &
Dolgin, 1996; Wallander &
Varni, 1998).
In many cases, existing literature on adjustment in parents of pediatric
cancer patients lacks a theoretical underpinning driving the investigation. A
conceptual model that can encompass the varied factors affecting parents can
enhance our understanding of the processes influencing the heterogeneity of
response. Investigation of factors related to distress in a number of areas
has been informed by Lazarus and Folkman's
(1984) model of stress and
coping, which emphasizes the role of the individual's appraisal of potential
stressors, the availability and utilization of material, social and personal
resources, and the coping strategies employed, in influencing the outcomes of
stressful events. This model has been shown to have utility with a number of
different groups of families dealing with childhood disability or chronic
illness (e.g. Sloper & Turner,
1993; Thompson, Gustafson,
Hamlett, & Spock, 1992;
Wallander et al., 1989). The
model has been further developed by Wallander et al.
(1989) and Wallander and Varni
(1998) in relation to families
caring for children with chronic physical disorders. They delineate three
categories of risk factors for this population: disease/disability parameters,
functional dependence, and psychosocial stressors. Resistance factors are also
defined in three categories: intrapersonal factors, such as personality and
effectance motivation; socioecological factors, such as family environment and
social support; and stress processing factors, such as cognitive appraisal and
coping strategies. Although the specific risk factors related to the child's
condition may vary, there is some consistency between studies of families of
children with different conditions in parental and family variables that have
been found to be related to outcome: socioeconomic factors, personality
variables, family environment, and social support
(Knussen & Sloper, 1992).
Findings from studies utilizing this model suggest that the individual's
perception of these factors, rather than their objective characteristics, is
the most important determinant of outcome
(Nolan, Grant, & Keady,
1996).
Specific studies of parents of children with cancer have also shown the
importance of elements of this model. Social support and family relationships
have shown significant relationships with parental adjustment in a number of
studies (e.g., Kupst & Schulman,
1988; Morrow, Carpenter, &
Hoagland, 1984; Speechley
& Noh, 1992) and, as with more general findings on social
support and stress outcome (Wethington
& Kessler, 1986), perceived support appears to be a stronger
influence than social network characteristics. Fewer studies have included
measures of appraisal, but perceptions of illness-related stress have been
shown to be related to adjustment problems
(Kazak & Barakat, 1997).
The issue of which coping strategies are most likely to promote adaptation is
unclear. Dahlquist et al.
(1993) suggest that greater
sensitizing or stimulus approach coping activity by both partners is related
to greater marital distress in the early months after diagnosis, and that, at
this time, greater use of avoidance strategies may be adaptive. However, no
significant relationships were found 20 months after diagnosis
(Dahlquist et al., 1996). In
other areas of chronic childhood illness, it has been found that, in the
longer term, greater use of palliative, emotion-focused coping strategies is
related to poorer maternal adjustment
(Thompson, Gil, Burbach, Keith, &
Kinney, 1993).
Considerable work is needed to investigate the role of these many factors
in parental distress at different stages of the illness and treatment, in
order to inform interventions to prevent or reduce distress. In addition,
greater clarity in specification of models to be tested is needed
(Holmbeck, 1997). Wallander
and Varni (1998) suggest that
resistance variables moderate the relationship between risk factors and
outcome, as well as directly affect outcome. However, the role of these
variables as moderators is rarely tested statistically.
"Moderation" implies an interactive effect between risk and
moderator variables in relation to outcome; that is, outcome will be better
for those at high risk with a resistance attribute than for those without it,
whereas the attribute will make little difference to outcome for those at low
risk. Main effects, on the other hand, imply that those with a resistance
attribute do better than those without it, regardless of the level of risk
factors.
Two problems affect the investigation of moderator effects in areas such as
childhood cancer: first, the statistical problems of testing for interaction
effects, especially with small samples
(Luthar, 1993) and second, the
problems of defining high- and low-risk populations, where delineation of
particular risk factors remains unclear and the population as a whole could be
deemed high-risk. In this case, the best test of moderator variables may
involve comparison with control groups as the low-risk sample. Nevertheless,
the main effects model is not necessarily less informative. It can still
investigate the question of what distinguishes those who show good adjustment
from those who show poor adjustment within a particular sample, and thus
provide useful information for clinical practice and intervention.
This study aimed to address this question within a main effects model, investigating maternal and paternal levels of distress in the short and medium term, at 6 and 18 months after the diagnosis of childhood cancer, and the factors predictive, both concurrently and longitudinally, of high or low levels of distress. Selection of variables to measure risk and resistance was informed by the model of stress and coping and findings from existing literature. The analysis addressed three hypotheses:
- . Parents with higher levels of risk factors of longer and more frequent
hospitalizations, relapse, negative effects on employment and family finances,
and more concurrent life stresses will show higher levels of distress.
- . Higher levels of distress at both 6 (Time 1) and 18 (Time 2) months
postdiagnosis will be significantly related to Time 1 measures of appraisal,
resources, and coping strategies, concurrently at Time 1 and longitudinally at
Time 2. High distress will be related to (a) appraisals of higher levels of
strain from the illness and lower levels of self-efficacy in dealing with the
illness; (b) lower levels of family and social resources; and (c) greater use
of emotion-focused and less use of problem-focused coping strategies.
- . Psychosocial resources will be significant predictors of distress,
independently of the effects of risk factors.
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Method |
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Participants
Families were recruited from five hospitals in the north of England specializing in the treatment of childhood cancer. Families of children who had been diagnosed in the preceding 6 months were identified as eligible for the study (n = 133). As part of the study was concerned with sibling responses (reported elsewhere: Sloper & While, 1996
), all families contained a sibling between 8 and
16 years of age. Ninety-nine families (75%) agreed to take part at Time 1. At
Time 2, 70 of the 80 families of surviving children (87%) took part. There
were no significant differences between participants and nonparticipants at
Time 2 on any Time 1 demographic, illness, or parent measures.
Mean age of the children at Time 1 was 9.3 years, range 9 months to 18
years; there were 46 boys (66%) and 24 girls (34%). There were 12
single-parent families, 2 headed by fathers. Social class background was
classified by occupation of the head of household
(OPCS, 1991): 33 families
(47%) were from nonmanual backgrounds and 35 (50%) from manual backgrounds,
with 4 (3%) being unclassified. All mothers (68) and 58 fathers returned
questionnaires; 2 fathers in two parent families failed to return
questionnaires. Missing data on different measures reduced the numbers
available for analyses to between 63 and 67 for mothers and 48 and 56 for
fathers.
Procedure
The study was approved by local research ethics committees at the five
hospitals concerned. Eligible families were contacted by letter to explain the
study and invite them to participate. Written consent was obtained.
Researchers then contacted families to answer any further questions about the
study and arrange an appointment for an interview. Semi-structured interviews
focused on parents' reactions to the illness, effects on the family, and views
of services. The majority of interviews were carried out in families' own
homes. Parents were sent questionnaires by mail, which the majority completed
before the interviews. With parents' consent, details of the child's
diagnosis, hospital admissions, and prognosis were obtained from consultants
and hospital records.
Measures
The measures utilized were mainly established scales of demonstrated
reliability and validity contained in the questionnaires completed by mothers
and fathers.
Parental psychological distress was measured at Time 1 and Time 2
on the Malaise Inventory (Rutter, Tizard,
& Whitmore, 1970). This is a 24-item scale with a yes-no
response format, adapted from the Cornell Medical Index and designed to access
psychosomatic symptoms associated with emotional disorder. This general scale
of psychological distress was chosen rather than a more specific measure of
anxiety or depression for two reasons: first, it has been widely used in the
United Kingdom (UK), both in national cohort studies (e.g.,
Power & Manor, 1992;
Rodgers, Power, & Hope,
1997), and in studies of parents caring for children with chronic
illness or disability (e.g., Quine &
Pahl, 1991; Sloper &
Turner, 1993); second, it has been suggested that comorbidity of
anxiety and depression makes broader measures appropriate in non-clinical
samples (Feldman, 1993;
Lindelow, Hardy, & Rodgers,
1997). Internal consistencies between.77 and.80
(Rodgers et al., 1997) and
test-retest reliabilities between.91 and.94
(Quine & Pahl, 1985;
Rutter et al., 1970) have been
reported for the Malaise Inventory. It has been shown to discriminate between
those with and without psychiatric disorder, rated on the basis of clinical
judgment (Rutter et al.,
1970), and between those who have or have not sought help for
mental health problems (Rodgers et al.,
1997). On the basis of such comparisons, a cutoff point of 6 or
more is held to indicate high levels of emotional distress.
Demographic variables were social class and family composition (single- vs. two-parent family).
Potential stressors included information concerning illness
variables obtained from the children's hospital records at both time
points and comprising: diagnosis (leukemia and lymphoma; solid tumors; CNS
tumors); number of hospital admissions; number of nights in hospital;
prognosis at Time 1 (rated by doctors as good: survival chances > 50%, and
poor: survival chances 
50%); relapse between Time 1 and Time 2; and
whether the child was still under treatment at the time of the interview (see
Table I). In order to
investigate the effects of other potential stressors on parental distress,
recent life events were measured at both time points on a 42-item
checklist covering the occurrence of major life events over the last 12 months
(Cheang & Cooper, 1984).
The instrument also assesses the individual's perception of the strain of each
event experienced on a 10-point Likert-type scale. Two scores are obtained:
total number of life events and life events strain. A high level of agreement
between mothers and fathers on the occurrence of events related to the family
has been found in earlier studies, indicating a satisfactory level of
interrater reliability (Sloper,
Cunningham, Knussen, & Turner, 1988). In addition,
financial and employment problems caused by the illness were
investigated in Time 1 and Time 2 interviews with parents. Financial problems
were rated as absent or present if such problems were reported by either
parent, and employment problems were rated separately for each parent.
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Psychosocial resources consisted of measures of family
relationships, social support and locus of control completed by mothers and
fathers at Time 1. Family relationships were assessed using the
Cohesion and Expression subscales of the Family Environment Scale
(Moos & Moos, 1981). These
nine-item scales assess individual family members' perceptions of their family
environment, with a true-false response format, and have been widely used in
studies of family functioning. Moos and Moos report internal reliabilities
of.78 and.69, respectively, with test-retest reliabilities of.86 and.73
respectively over a 2-month period. In this study, alphas were.79 (mothers)
and.66 (fathers) for cohesion, and.73 (mothers) and.61 (fathers) for
expression. Mothers' and fathers' responses were significantly correlated:
r (49) =.64, p <.001 for cohesion; r (50) =.51,
p <.001 for expression.
Parental social support was measured for mothers and fathers using
the Support Network Satisfaction Scale from the Social Support Resources
Measure (Vaux & Harrison,
1985), as research has shown that satisfaction with social support
is the aspect most strongly related to adjustment
(Schwartzer & Leppin,
1991). The scale assesses satisfaction with five modes of support:
emotional, socializing, practical, financial, and advice/guidance, on a
4-point Likert-type scale. The total score for satisfaction was selected for
inclusion in analyses. Vaux and Harrison report internal reliability of.88.
Alpha coefficients for this study were.81 for mothers and.70 for fathers. A
high score indicates greater dissatisfaction.
Parental locus of control was measured using the Brief Locus of
Control Scale (Lumpkin, 1985).
This is a six-item measure, consisting of three items reflecting internality
and three reflecting externality, scored on a 5-point Likert-type scale, with
a high score representing greater internality. Lumpkin reported a coefficient
of internal consistency of.68.
Stress processing variables, assessed at Time 1, consisted of
measures of appraisal and coping strategies. Parental appraisal was
measured using a scale developed by Thompson et al.
(1992) to assess illness
stress and efficacy in relation to four illness-related areas: dealing with
the child's medical problems and symptoms; maintaining the child's emotional
well-being; maintaining the parent's own emotional well-being; and preparing
for an uncertain future. A further item, maintaining the emotional well-being
of siblings, was added for this study. Parents rated the stress they
experienced in relation to each area on a scale from 1 (not stressful) to 10
(very stressful), and their feelings about their ability to handle each task
(efficacy) on a scale from 1 (very uncertain that they can handle it) to 10
(completely certain that they can handle it). Thompson et al. report internal
reliability of.76 for each scale. In this study reliability was.84 (mothers)
and.90 (fathers) for the stress scale and.84 (mothers) and.82 (fathers) for
the efficacy scale. Addition of the item focusing on maintaining siblings'
well-being in this study did not reduce the reliability of the scale: values
without this item were.77 (mothers) and.86 (fathers) for stress and.82
(mothers) and.76 (fathers) for efficacy. Total scores were computed for stress
and efficacy, and the difference (stress-efficacy) was used to give a measure
of appraisal.
Parental coping strategies were measured at Time 1 using the Ways
of Coping (Revised) Questionnaire (Folkman
& Lazarus, 1985). This consists of 66 items representing
thoughts and actions that can be used to deal with stressful situations. The
respondent rates each item on a 4-point scale, from "not used" to
"used a great deal." Adequate reliability and validity have been
demonstrated for the use of the scale with parents of disabled children
(Knussen, Sloper, Cunningham, &
Turner, 1992). Parents in this study were asked to relate the
items to "dealing with day-to-day problems and stresses caused by your
child's illness." Other amendments to the scale followed those
instituted by Knussen et al.
(1992) in relation to parents
dealing with problems related to childhood disability. The scale used included
64 items. A number of studies have reported sets of subscales drawn from
factor analyses of the Ways of Coping Questionnaire
(Folkman & Lazarus, 1985;
Knussen et al., 1992;
Vitaliano, Russo, Carr, Maiuro, &
Becker, 1985), and there are similarities between these sets.
However, the solutions appear to be partly dependent on sample and context,
and none of these studies relates to parents dealing with life-threatening
illness in a child. Scales derived from factor analysis of the present data
were therefore preferred for this study. Responses for mothers and fathers
were pooled to maximize the number of respondents and subjected to principal
components factor analysis, in line with methods described by Folkman,
Lazarus, Dunkel-Schetter, DeLongis, and Gruen
(1986). Five factors based on
50 items were obtained, accounting for 38.2% of the variance. All had
eigenvalues of 2 or more. The factors were labeled "Problem
solving" (
=.88, 16 items, e.g., "I make a plan of action
and follow it"); "Self-directed" ( =.76, 9 items,
e.g., "I criticize or lecture myself"); "Support
seeking" ( =.78, 8 items, e.g., "I ask relatives or friends
I respect for advice"); "Wishful thinking" ( =.75, 6
items, e.g., "I hope a miracle will happen");
"Distancing" ( =.71, 11 items, e.g., "I don't let it
get to me too much"). These factors correspond most closely with those
of Vitaliano et al. (1985).
Proportional coping scores for each factor were calculated by obtaining the
mean score for the factor and dividing by the sum of the mean scores for all
factors, and used in the analyses to take into account individual differences
in relative use of ways of coping, as recommended by Vitaliano, Maiuro, Russo,
and Becker (1987).
In addition to these measures, the short 10-item version of the
Marlowe-Crowne Social Desirability Scale
(Strahan & Gerbasi, 1972)
was used to measure social desirability response bias. Analysis of
relationships between self-report measures from a single source can be
affected by such response bias, increasing the strength of relationships
between measures. In order to minimize this effect, social desirability scores
were used as control variables in all multivariable analyses.
Interview data were analyzed using qualitative methods to identify themes
and categories that reflected the perceptions of parents
(Miles & Huberman, 1984).
The results of this analysis are reported elsewhere
(Sloper, 1996b), but, where
appropriate, themes from interview material appear in the discussion to
illuminate results of the quantitative analyses reported here.
Analysis
Separate analyses were carried out for mothers and fathers. In line with
the importance placed on the individual's perception of appraisal and
resources in the stress and coping model, mothers' measures of these variables
were used in analysis of maternal outcome and fathers' measures in analysis of
paternal outcome. The first step in each analysis was to investigate the
bivariate relationships between outcome (Time 1 and Time 2 Malaise Inventory
scores) and descriptor variables.
The distributions of Malaise Inventory scores for mothers and fathers at both time points were tested for normality (Kolmogorov-Smirnov test), and none was significantly different from normal. Therefore, one-way analysis of variance (ANOVA) was used for categorical descriptor variables and regression plots for continuous variables. Concurrent relationships between distress and potential stressors (illness events, life events, financial and employment problems) were investigated at Time 1 and Time 2, in order to take into account changes in these variables, such as the child coming off treatment or relapsing. Measures of appraisal, resources, and coping strategies at Time 1 were investigated as potential predictors of both Time 1 and Time 2 distress. The analyses included only those parents who were in the study at both times. For each outcome measure, a set of descriptor variables was identified for inclusion in multivariable analyses. In order to address problems in multivariable analysis of multicollinearity of the independent variables, correlations between descriptors were computed to identify whether any variables were confounded (r >.59). No variables significantly related to outcome were confounded. The linearity of all relationships was also examined to determine whether variables could be entered in multiple regression analyses. This indicated that all significant variables from bivariate analyses were suitable for entry into multiple regression. Dummy variables were created for categorical variables.
Variables related to the outcome at the 5% level in bivariate analyses were
selected for inclusion in multivariate analyses. To control for Type 1 error,
the Bonferroni method was used to determine per test significance for each
family of variables. To reduce the number of variables entered in multiple
regression and to take into account covariance between variables within the
categories of stressors, resources, and coping strategies, a stage process of
analysis was adopted (Cohen & Cohen,
1983). The first analysis included potential stressors; the second
included resource variables; and the third included coping strategies.
Appraisal was treated as a separate category. For each analysis the
significance of t for each predictor variable was examined, and only
variables significant at the 5% level were selected for inclusion in the final
stage of analysis. For these exploratory stages of the analysis, stepwise
regression was used. Finally, to determine the most powerful combination of
variables predicting Malaise Inventory scores and the independent effects of
psychosocial variables, the significant variables from each analysis were
entered into a heirarchical regression analysis, controlling for any
significant stressors and demographic variables before stepwise entry of
psychosocial resources, appraisal, and coping strategies. In each set of
analyses, scores on the Marlowe-Crowne Social Desirability Scale were entered
as a control variable.
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Results |
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Scores on Malaise Inventory
The distributions of Malaise scores indicated a high level of stability in levels of distress over time. The mean score for mothers was 6.73 (SD = 4.75, range = 0-21) at Time 1 and 6.60 (SD = 4.83, range = 0-20) at Time 2; for fathers the mean score was 5.09 (SD = 3.98, range = 0-15) at Time 1 and 5.29 (SD = 4.50, range = 0-18) at Time 2. Time 1 and Time 2 scores correlated at r (67) =.83, p <.001, for mothers and r (56) =.70, p <.001, for fathers. Fathers' means were lower than mothers' at both times; the difference between scores for spouses was significant at Time 1, t (55) = 2.14, p <.05, but not at Time 2, t (55) = 1.42, ns. Fifty-one percent of mothers and 39% of fathers scored above the cutoff point at Time 1, with similar proportions at Time 2: 51% of mothers and 41% of fathers.
Bivariate Analysis
The next step in the analysis investigated the predictors of Time 1 and
Time 2 scores. For this purpose Malaise Inventory scores were treated as
continuous variables: the cutoff point is advisory only and categorizing the
data in this way may lose valuable information with regard to variance in
scores.
Potential Stressors and Demographic Variables. Current employment problems were significantly related to fathers' Malaise scores at Time 1: F(2,54) = 10.37, p <.01. Significant differences were found between scores for those who did not experience problems (M = 3.32, SD = 3.30, n = 31) and both those who were unemployed at the time of diagnosis (M = 8.54, SD = 4.43, n = 11) and those who were employed but experienced problems as a result of the illness (M = 6.20, SD = 2.91, n = 15). For the purposes of entry into multivariable analysis, the latter two groups were combined. Illness variables showed no significant relationships with mothers' Malaise scores, but number of hospital admissions was significantly related to fathers' scores at Time 2: r (54) =.41, p <.05. Strain scores for life events in the preceding year were significantly related to fathers' Malaise scores at Time 2 only: r (49) =.40, p <.05. Demographic variables showed no significant relationships with mothers' or fathers' scores at either time.
Psychosocial Variables: Appraisal, Resources, and Coping Strategies. Table II presents the results of analyses of relationships between psychosocial variables, measured at Time 1, and Malaise scores at both times. Significant relationships with appraisal scores were found for mothers and fathers at both time points. For mothers, resources of social support satisfaction, family cohesion and expression, and locus of control were also significant at both time points. For fathers, there were no significant relationships between Time 1 outcome and resource variables. At Time 2, social support satisfaction and family cohesion were significant. Use of coping strategies of problem solving and self-directed coping showed significant relationships with maternal distress at both times. For fathers, self-directed coping was significantly related to distress at Time 2 only.
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Multiple Regression Analysis
Mothers. Intermediate stages of the analysis reduced the number of
variables for entry into the final regression. The significant variables for
regression on Time 1 Malaise scores were appraisal scores, family cohesion,
social support satisfaction, locus of control, and self-directed coping. For
Time 2 Malaise scores, the significant variables were appraisal scores, family
cohesion, and self-directed coping. The final analyses produced similar models
at Time 1 and Time 2 (see Table
III). At both times, higher levels of distress were associated
with lower levels of family cohesion and appraisal of high strain and low
efficacy in relation to ability to handle the illness. At Time 1, high use of
self-directed coping was associated with higher levels of distress.
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Fathers. Only two variables showed significant bivariate relationships with Time 1 Malaise scores: appraisal scores and employment problems. Both were entered into multiple regression. Intermediate stages of analysis on Time 2 Malaise scores indicated the following variables for entry into the final analysis: number of hospital admissions, life events strain in the past year, family cohesion, appraisal, and self-directed coping. Table III gives the results of the final multiple regressions for Time 1 and Time 2 scores.
In contrast to the analysis for mothers, fathers' results showed that both risk variables and psychosocial variables were significantly related to outcome. At Time 1, unemployment or negative effects of the illness on fathers' employment and appraisal of high strain and low efficacy in dealing with the effects of the illness continued to show significant relationships with Malaise scores when controlled for each other. At Time 2, risk factors of hospital admissions and life events strain were entered first, before stepwise entry of psychosocial variables. Family cohesion was the significant psychosocial variable to enter the equation. Appraisal and self-directed coping lost significance when controlled for risk factors. Life events strain scores lost significance after the entry of cohesion scores, leaving number of hospital admissions and family cohesion as the significant variables.
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Discussion |
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The findings of high levels of distress, both in the short and medium term, for a substantial number of parents (half the sample of mothers and 4 out of 10 fathers) are consistent with some recent studies of parents of children with cancer (Hoekstra-Weebers, Heuvel, Klip, Bosveld, & Kamps, 1996
;
Sawyer et al., 1993). The mean
Malaise scores found in this study are also comparable with those found in UK
studies of parents of severely disabled children (e.g.,
Quine & Pahl, 1991:
mothers M = 6.0; Sloper & Turner,
1993: mothers M = 7.4, fathers M = 4.8). In
contrast, findings on representative populations samples have shown lower
scores. For example, Richman, Stevenson, and Graham
(1982) found that 20% of
mothers of nondisabled preschool children scored above the cutoff point and,
in the National Cohort Study, Rodgers et al.
(1997) found mean scores of
between 1.85 and 2.89 for men and 2.61 and 3.45 for women at age 33 (with the
higher means for those who experienced parental divorce before age 16).
The distribution of Malaise scores indicated that high levels of distress
were by no means inevitable for these parents of children with cancer. The
analysis aimed to investigate what factors distinguished those with high
distress from those without. The high correlations and similar means between
Time 1 and Time 2 Malaise scores indicate consistency over time, despite
changes in the children's treatment and illness status. Parents whose children
had completed treatment were not significantly less distressed than those
whose children were still receiving treatment or those whose children had
relapsed. On the face of it, this result is surprising. However, Dahlquist et
al. (1996) also found that
parents of children still in treatment did not differ from parents of children
who were off treatment at 20 months postdiagnosis. As Eiser
(1998) notes, the fear of
recurrence can remain high, and this fear was apparent in our interviews with
parents 18 months after diagnosis. Parents' accounts in these interviews also
showed that the transition from the active phase of treatment and attempts to
return to normal routines were often problematic; parents felt that they had
received little preparation for the problems encountered and little support in
the posttreatment phase. Some parents described feeling that they had had to
cope during the active phase of treatment and their own feelings had been set
aside. Once they returned home after this phase, these feelings may erupt.
These descriptions, and the levels of distress found, support recent
suggestions (Kazak & Barakat,
1997; Stuber et al.,
1994) of posttraumatic stress disorder in some parents of children
with cancer after the end of treatment. Further investigation of this issue on
a longitudinal basis would be helpful to our understanding of parental
reactions.
For mothers, the results show that hypotheses regarding the effects of illness events and risk factors related to life events, employment, and financial problems were not supported: none of these variables was significantly related to Malaise scores. The hypotheses regarding the effects of psychosocial variables and appraisal, derived from the model of stress and coping, were supported. In multivariate analyses, Time 1 measures of these variables were related to levels of distress at both time points. Thus, specific aspects of the illness situation did not strongly affect mothers' distress; rather, their ability to deal with the illness without deleterious effects on mental health was affected by psychosocial resources and stress processing.
Family cohesion was an important resource for mothers and fathers. High
levels of family cohesion have been found to relate to adjustment of parents
and children in other studies (e.g.,
Horowitz & Kazak, 1990;
Mastroyannopoulou, Stallard, Lewis, &
Lenton, 1997) and interviews with parents in this study suggest
that families with strong relationships were more likely to become closer as a
result of the illness, in contrast to those who felt that the illness had
caused problems in relationships. Dolgin and Phipps
(1996) suggest that the
construct of family cohesion is related to the idea of centripetal and
centrifugal forces, which operate around events in the normal family life
cycle to draw families together or pull them apart. Serious illness is
generally seen as producing centripetal forces
(Rolland, 1987), but if this
occurs in families who are already undergoing centrifugal forces, greater
family disengagement may result. In this context, it is significant that Time
1 measures of family cohesion predicted distress at Time 2.
Mothers' appraisals of the strain of illness-related demands and their confidence in their own ability to deal with these were related to distress, both concurrently at Time 1 and predictively for Time 2. Both this and the strong relationship between distress scores at the two time points indicates that problems are likely to continue, regardless of changes in the illness situation, for those mothers who find most difficulty in dealing with the situation in the early stage. Early identification of and intervention to support such parents are indicated. At Time 1, more use of self-directed coping, which encompasses self-blame, was related to higher levels of maternal distress. This suggests that investigation of parental perceptions in the early stages could be useful in helping parents to gain a greater understanding of their situation and avoid self-blame.
Results for fathers were similar to those for mothers in showing that
appraisal and family cohesion were predictors of distress. Some studies have
suggested that fathers are less affected than mothers by serious childhood
illness (Sawyer et al., 1993).
However, it is not clear whether the difference between mothers and fathers in
this study at Time 1 indicated different reactions to the illness or was
related to general population differences between men and women. Nevertheless,
there were different predictors of fathers' distress scores, with stronger
effects of risk factors, both those related to and outside the immediate
illness situation. At Time 1, the significant risk factor was fathers'
employment situation, with unemployed fathers and those experiencing
employment problems due to the illness being at greater risk. Unemployment and
job insecurity have been shown to be risk factors for psychological health
(Fryer, 1995), and the results
may reflect a number of factors: already raised levels of distress before the
illness, greater vulnerability for unemployed fathers, and the impact of
employment problems caused by the illness on current levels of distress. For
unemployed fathers and those experiencing problems at work, the role of work
in providing a focus and distraction outside the family and the illness may
not have been available.
At Time 2, the significant risk factor for fathers was the total number of hospital admissions experienced by the child in the 18 months since diagnosis. In the majority of families, mothers stayed in the hospital with their children, and frequent hospital admissions were disruptive of family life. In the longer term, this may have a cumulative effect on fathers' well-being. Interviews with mothers indicated that they often obtained support from other parents and staff while staying at the hospital. This may have helped to reduce the effects of such disruption on mothers' well-being. However, such support was not generally available outside the hospital; thus, fathers may lack the means to obtain support, a situation compounded by the frequent absence of their wives.
The results of the multivariable analysis suggested that for fathers, unlike for mothers, the effects of higher levels of stressors combined with lower levels of family support were additive. This points to the importance of service providers' awareness of the ways in which both parents are affected by the illness and other events in their lives and recognition that responses of different family members will vary.
Finally, the amount of variance explained in the multivariate analyses was
only moderate, and it is apparent that other factors not measured in this
study influence parental adjustment. Other personal resources, reflected in
measures of aspects of personality and beliefs, are also likely important
(Sloper & Turner, 1993).
Equally, more sensitive measures of illness and treatment variables than those
obtained in this study may show significant effects.
The continuation of high levels of distress over time for a number of
parents points to the importance of interventions to identify those at risk in
the early treatment stages and of the provision of ongoing support. Such
support could usefully focus on the important resources that can help parents
withstand the stresses of the illness: family relationships and appraisal,
that is, their feelings about the demands of the illness and their confidence
in their ability to deal with these demands. It was clear from our interviews
that fathers in particular found it difficult to access support at all stages,
and both parents felt that they received little support once treatment was
completed. Making the transition from the active phase of treatment to the
off-treatment phase is identified as a problem by Ostroff and Steinglass
(1996), who suggest that
parents need support and guidance to help them to return to normal
routines.
In general, the results of this study are similar to those found for many
different groups of individuals dealing with stressful life events (e.g.,
Holahan & Moos, 1987), and
there are few indications of stressors specific to childhood cancer. However,
both the generalizability of these findings and the ability of the analysis to
detect differences in relation to predictor variables are limited by the small
sample. While the study recruited from a number of different centers and the
response rate was relatively good, the low incidence of childhood cancer makes
accrual of large samples difficult. The small sample size, and the lack of a
control group to form a lowrisk sample, precluded the investigation of
moderator effects, and thus the testing of models such as those of Wallander
and Varni (1998). The analysis
of main effects shows that variables such as family cohesion or employment
problems are associated with more distress, and this can alert clinicians to
be aware that the presence of such factors indicates the need for early
intervention to support families. However, this analysis cannot tell us
whether these factors pose risks for all families or only for parents facing
the stress of childhood illness. Whereas comparison with research on other
samples suggests that these are general risk factors, research that
investigates moderator effects could usefully indicate to what extent such
risk is increased under the stress of childhood illness.
Although theoretical models emphasize the importance of the individual's perceptions in the stress and coping process, there are problems in interpretation of analyses of variables obtained from a single self-report source. Efforts were made to minimize such problems statistically by controlling for social desirability response bias and investigation of multicollinearity of descriptor variables before multivariable analysis. However, studies that obtain data from multiple sources, including staff who are closely involved with families, could help to increase our understanding. In addition, the study investigated only one dimension of emotional distress: that reflected in psychosomatic symptoms. This may underestimate the incidence of distress that manifests itself in other ways, such as anxiety, helplessness, or difficulties in social functioning. Studies using a wider range of measures could provide a clearer picture of the extent of distress. Further longitudinal research focusing on multicenter samples, and using a range of measures and informants, is needed. Such research also needs to extend the period of follow-up and to investigate the effects of targeted family-focused interventions to reduce distress.
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Acknowledgments |
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This study was funded by the Cancer Research Campaign, grant number CE 1055/0901. I thank Professor Anne Charlton for her support of the study; Dr. David While for statistical advice; Helen Stone and Sara Finlayson for help in interviewing families; consultants and staff at the Royal Manchester Children's Hospital, the Christie Hospital, St. James's University Hospital, Leeds, and The Children's Hospital, Sheffield, for their help in recruiting families for the study; and last, but not least, all the children and parents involved in the study.
Received March 12, 1998; revision received August 17, 1998; accepted November 23, 1998
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