Acta Oncologica, 2007; 46: 67 76
ORIGINAL ARTICLE
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Emotional and behavioral problems in children of parents recently
diagnosed with cancer: A longitudinal study
ANNEMIEKE VISSER1, GEA A. HUIZINGA1, HARALD J. HOEKSTRA2, WINETTE
TA VAN DER GRAAF3, STACEY M. GAZENDAM-DONOFRIO4 & JOSETTE EHM
HOEKSTRA-WEEBERS1,4,5
1
Health Psychology, University Medical Center Groningen and University of Groningen, 9700 RB Groningen, the
Netherlands, 2Surgical Oncology, University Medical Center Groningen and University of Groningen, 9700 RB Groningen,
the Netherlands, 3Medical Oncology, University Medical Center Groningen and University of Groningen, 9700 RB
Groningen, the Netherlands, 4Psychosocial Services, University Medical Center Groningen and University of Groningen, 9700
RB Groningen, the Netherlands, and 5Comprehensive Cancer Center North-Netherlands, the Netherlands
Abstract
This study examines the prevalence of problems in children within four months after a parent’s cancer diagnosis (T1) and
six (T2) and twelve months (T3) afterwards. Sixty-nine ill parents and 57 spouses completed the Child Behavior Checklist
for 57 primary school (aged 4 11 years) and 66 adolescent children (aged 12 18 years). Adolescents completed the selfreport version. Children’s functioning was compared to that of the norm group and a sample of families that were
confronted with parental cancer between one to five years before study participation (retrospective study). Most children
were reported as having a similar level as or fewer problems than was reported in the norm and retrospective studies.
Reported problems decreased with time, but children who initially had more problems remained vulnerable during the year.
Fathers and mothers highly agree in their perception of children’s behavior, with the exception of adolescent daughters’
behavior. Agreement between mothers and adolescent daughters was high, whereas agreement between fathers and
adolescent sons and daughters, and mothers and adolescent sons was low to moderate. The outcomes suggest that most
children do not experience problems shortly after the parent’s diagnosis and were functioning over time on a level equal to or
better than that of their peers. Differences in informant’s perceptions appear and remain of interest.
It can be very distressing for a child to have a parent
be diagnosed with cancer. Being confronted with a
life-threatening disease may cause a parent to experience emotional problems or become stressed,
which may result in their having less attention for
their children [1]. Additionally, a parent may be away
from home more often while they are admitted to the
hospital for treatment. While it has been hypothesized that a distressful event has an enormous impact
on children, conflicting results have been found.
Primary school children (411 years) who have a
parent with cancer do not report experiencing any
more problems than other children of the same age
[24]. Parents, however, report that primary school
children have more emotional problems than children in the norm group [3,5]. One of the few studies
to examine differences between boys and girls in this
age group found that parents with cancer reported
that their sons experience more emotional problems
than the norm group; reports on daughters showed
no difference with the norm [6].
Studies on adolescents (12 18 years) of a parent
with cancer suggest that adolescents report having
more problems than other adolescents [3,5,7]. Other
studies have found that this mainly applies to
adolescent daughters [2,4,6,8]. Studies that rely on
parents’ reports of the children’s functioning have
found either no difference in prevalence of problems
in comparisons with norm groups [3,4] or that
patients’ reports show that children experience
more problems than the norm, but spouses’ reports
do not [5,6]. That results vary from study to study
Correspondence: JEHM Hoekstra-Weebers, Psychosocial Services, University Medical Center Groningen, P.O. Box 30.001, 9700 RB Groningen, the
Netherlands, Telephone /31 50 3614978. Fax: /31 50 3619326. E-mail: [email protected]; [email protected]
(Received 3 April 2006; accepted 17 July 2006)
ISSN 0284-186X print/ISSN 1651-226X online # 2007 Taylor & Francis
DOI: 10.1080/02841860600949560
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68
A. Visser et al.
would seem to be related to the source of the
information: the parents or the children themselves.
In many of the studies performed on this subject,
the patient was either been diagnosed with cancer
years before or the amount of time between diagnosis and study participation ranged from a couple
of weeks and nine years (see review [9]). Only a
handful of studies have examined the consequences
for children in the period immediately after diagnosis
[2,4,8], despite the finding that distressful events can
cause emotional problems in the short term [10].
Long-term consequences are more often the result of
the extent to which a parent’s cancer leads to a
chronic disturbance of ‘‘normal’’ life and of the
demands and burden associated with the disease
[11,12]. For that reason, it is important to gain
insight in an early stage in the degree to which
problems develop. Furthermore, studies for the most
part have been cross-sectional in design, while longitudinal research is necessary to study change over
time.
This study examined the prevalence of and change
in emotional and behavioral problems in children
during the first year after a parent is diagnosed with
cancer. Children’s functioning will be compared
with that of children of parents who were diagnosed
one to five years ago and with children of the norm
group. The second issue concerned the predictive
power of earlier emotional and behavioral problems
in children on later problems. Lastly, agreement
among informants in the perception of emotional
and behavioral problems will be investigated.
Methods
Procedure
Patients recently diagnosed with cancer that had an
expected chance of survival of one year or more,
children between 4 18 years of age, and sufficient
command of the Dutch language were asked to
participate. Written information about the study was
provided by the physician or oncology nurse at the
Departments of Surgical, Gynecological and Medical Oncology and Hematology at the University
Medical Center Groningen, the Netherlands between January 2001 and February 2003. Each family
member was asked for written informed consent
according to the regulations of the Medical Ethical
Committee. After written informed consent was
obtained, questionnaires and prepaid envelops for
the first measurement (T1) were sent to each family
member. Questionnaires for the second and third
measurement were mailed at six (T2) and 12 months
(T3) after the first measurement. Family members
were instructed to fill in the questionnaires independently of each other.
Emotional and behavioral functioning
The Child Behavior Checklist (CBCL) and Youth
Self-Report (YSR) were used to obtain parent’s
reports of children [13,14] and adolescent’s selfreported emotional and behavioral problems
[15,16]. The CBCL includes 120 and the YSR
102 items. Broad-band internalization and externalization scale scores and total problem score were
used in the present study. The internalization
problem scale (32 items) represents the subscales
social withdrawal, somatic complaints, and anxiety
depression. Aggressive and delinquent behavior form
the externalization problems scale (30 items). The
total problems scale represents the total score
derived from the sum of the internalization and
externalization syndrome scales plus thought problems, attention problems, social problems, and sex
problems and remaining items of the CBCL/YSR.
Items can be scored on a three-point scale: 0 /not
true, 1 /somewhat or sometimes true, 2 /very true
or often true. Higher scores denote more problems.
In addition, raw scores were transformed into Tscores. T-scores are standardized scores with a mean
of 50 and an SD of 10 on the basis of a normative
national sample of children who had not been
referred for mental health services in the previous
year. Using T-scores provides a basis for comparison
of, for example, boys and girls taking into account
the differences that exist between boys and girls
in the norm group [13]. Furthermore, the manual of
the CBCL/YSR defines cut-off points to differentiate
children considered to function normally from those
considered to have clinically elevated problems.
The CBCL/YSR are well constructed questionnaires that are widely used nationally and internationally to describe the functioning of children. The
CBCL/YSR showed good internal consistency for
the three scales at T1, T2 and T3 (range a/0.84 to
a/0.94). The Dutch manual of the CBCL provides
norm data on a randomly selected Dutch sample of
1 241 primary school (623 boys and 618 girls, aged 4
to 11 years) and 986 adolescent children (493 boys
and 493 daughters, aged 12 to 18 years) [14]. The
manual of the YSR provides norm data based on a
randomly selected Dutch sample of 560 boys and
564 girls [16]. Response in these Dutch samples was
82%. A significantly greater number of parents of
primary school children participated than of adolescent children (p 5/0.001). No difference was found
between responders and non-responders in regarding children’s gender [14].
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Impact parental cancer on children
69
Additional comparisons were made with a group
of children of parents diagnosed with cancer one to
five years prior to assessment (mean 2.3 years).
These families were approached according to the
same procedure, eligibility criteria, during the same
time and in the same hospital as described for
the present study. Of the 476 cancer patients
approached, 205 consented to participate (response
43%). Parents who declined to participate did not
differ significantly from participating parents concerning gender of the ill parent, type of cancer, and
time since diagnosis. Ill parents and spouses in that
study provided information on emotional and behavioral problems of 114 primary school (59 sons and
55 daughters) and 222 adolescent children (105 sons
and 117 daughters). Adolescents reported also on
their own functioning. This group will be referred to
as the retrospective group. More information on the
retrospective group can be found in a previously
published study [6].
adolescent sons and daughters) to examine betweensubject effects.
Pearson’s Product-Moment Correlations were
performed to analyze the predictive power of earlier
emotional and behavioral problems on later problems.
Lastly, Pearson’s Product-Moment Correlations
were conducted using CBCL T-scores to examine
agreement between fathers, mothers and adolescents. In line with an earlier study [6], agreement
was examined between fathers, mothers and adolescents rather than between ill parents, spouses and
adolescents. A Pearson Correlation Coefficient lower
than 0.30 indicates weak agreement, a coefficient
between 0.30 and 0.50 indicates moderate agreement, and a coefficient higher than 0.50 indicates
strong agreement [17].
Multiple comparisons were corrected for using a
Bonferroni corrected alpha (alpha/number of comparisons) as described by Dunn [18].
Analyses
Results
Independent t-tests and x2 tests were used to
examine differences between families who participated in this study and those who declined to
participate in age, gender of ill parents and type of
cancer. Furthermore, independent t-tests were used
to examine differences in problems reported at T1
by parents and children who dropped out of the
study after T1 and by parents who participated at
the three measurements.
Two sided t-tests were used to examine differences
in the prevalence of emotional and behavioral
problems between children in the current study as
reported by ill parents, spouses and adolescents
themselves and children of the norm and retrospective groups. Children who scored above the cutoff points as defined by Verhulst and associates
[14, 16] were defined as having clinically elevated
scores. It could be suggested that differences between parents’ and children’s reports reflect differences in perspectives. Therefore, conform an earlier
study [7], a child was considered to be experiencing
clinically-elevated problems when his scores, according to either the patient, spouse or the child himself,
fell above the cut-off points. x2 tests were used to
compare the frequencies of children who were scored
above and below the cut-off points with the norm
group.
Repeated measures analyses of variance (ANOVAs) were computed to investigate change over time
in emotional and behavioral problems in children
and adolescents during the first year. Subjects were
divided into four subgroups (primary school and
Participants
Of the 222 families approached, 112 agreed to
participate at T1 (response /50%). Families who
declined participation did so because parents were
not interested in the study (n /27), children did not
want to participate (n /17), participation was too
aggravating for families (n /17), parents had a poor
(n /3) or a good prognosis (n /6), children were
considered too young (n /5), or were not informed
about the cancer diagnosis (n /3). For the remaining families (n /32), reasons to decline participation
were not given.
Of the 112 families who participated at T1, 74
families (66%) participated at T2 and 69 at T3
(62%). In total, 43 families dropped out of the study.
The 69 families who completed questionnaires at the
three measurements were the focus of the current
study.
The sample consisted of 69 parents diagnosed
with cancer and 57 spouses reporting on 57 primary
school and 66 adolescent children. More information on socio-demographic variables is listed in
Table I. Breast cancer was most prevalent (n /24)
followed by gynecological (n /8), dermatological
(n /8), gastrointestinal (n /7), urological (n /7),
hematological (n /5) and other cancers (such as soft
tissue, central nervous system or head and neck
cancer, n/10). Mean time since diagnosis was two
months at T1 (SD /1.0 month, range 1 week to
4 months), seven months at T2 (SD /1.2 month,
range 610 months) and 13 months at T3 (SD /1.2
70
A. Visser et al.
Table I. Demographic characteristics
Parent characteristics
n
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Ill parents
69
Mothers
46
Fathers
23
Mean age/43, SD /5.1, range/33 to 55 years
%
n
%
57
22
35
39
61
16
23
18
28
40
32
66
35
31
53
47
n
%
Number of children participating in the study per family
1
28
2
31
3
7
]/4
3
41
45
10
4
67
33
Spouses
Mothers
Fathers
Mean age/43, SD/5.7, range/27 to 56 years
Highest level of education completed by ill parents
Low1
11
16
Middle2
30
44
28
41
High3
Highest level of education completed by spouses
Low1
Middle2
High3
Child characteristics
n
%
Primary school children
Daughters
Sons
Mean age/8, SD/2.1
57
32
25
56
44
Family characteristics
n
%
One-parent families
Number of children in a family
1
2
3
]/4
6
9
13
36
11
9
19
52
16
13
Adolescents
Daughters
Sons
Mean age/15, SD/2.0
1
Primary school or lower vocational degree.
Lower general secondary education or intermediate vocational education or high school degree.
3
Higher vocational education or university degree.
2
months, range 12 18 months). One parent suffered
from recurrent illness at T3.
Representative ness
Parents diagnosed with cancer who declined participation did not differ significantly in age and gender
from parents who did participate. Type of malignancy, however, affected study participation (x2 /
41.7, p 5/0.001). The percentage of patients with
gynecological malignancies was significantly higher in
the non-participating group (22%) than in the participating group (8%, x2 /10.5, p5/0.001). In contrast, a higher percentage of patients with urological
(12%) and soft tissue malignancies (10%) participated than declined (2.7%, x2 /18.1, p 5/0.001;
4.7%, x2 /6.5, p /0.011, respectively). Percentages
of participants and non-participants with other
malignancies were comparable.
Ill parents who dropped out of the study after T1
did not differ in age from those who continued
to participate. The percentage of families in which
the father was diagnosed with cancer was significantly higher in the group that ended participation
(57%) than in the group that continued to participate (34%, x2 /14.3, p5/0.001). Furthermore, ill
parents who dropped out reported significantly more
externalizing problems (t /2.1, p /0.037) in children at T1 than did ill parents who continued to
participate. Spouses who dropped out of the study
reported significantly more internalizing problems
(t /3.0, p /0.001), externalizing (t /3.6, p 5/0.001)
and more total problems (t /3.7, p 5/0.001) in
children at T1 than did spouses who continued to
participate. Adolescents who dropped out reported
significantly more internalizing problems (t /2.5,
p/0.014), and tended to report more total problems (t /2.0, p /0.051) at T1 than adolescents
who continued to participate.
Prevalence of emotional and behavioral problems
as perceived by ill parents and spouses
Ill parent’s and spouse’s reports of their children’s
functioning are summarized in Table II.
Primary school sons. No significant differences were
found between ill parents’ and spouses’ reports of
problems in sons at the three measurement times
and reports of problems in sons of the norm group.
In comparison to the retrospective group, ill parents
in the current study reported significantly less
internalizing problems at T3.
Primary school daughters. Ill parents reported that
daughters had similar levels of problems to daughters in the retrospective and norm groups. Spouses reported significantly fewer total problems in
Ill parents
T1
M (SD)
T2
M (SD)
Retrospective
group
Spouses
Retrospective group
Norm group
T3
M (SD)
M (SD)
T1
M (SD)
T2
M (SD)
T3
M (SD)
M(SD)
M(SD)
Primary school sons
Internalizing
Externalizing
Total Problems
5.4 (5.4)
7.6 (6.6)
22.0 (18.2)
5.1 (5.6)
7.2 (6.9)
20.8 (18.3)
3.9 (4.3)a
6.1 (6.4)
17.4 (13.3)
7.1 (6.9)
8.9 (6.6)
24.7 (18.6)
4.7 (6.6)
7.5 (7.7)
21.7 (25.2)
5.0 (8.2)
5.3 (6.9)
18.2 (25.3)
3.9 (7.0)
5.3 (7.4)
16.8 (25.1)
5.7 (6.5)
7.6 (6.0)
20.8 (16.0)
4.8 (4.7)
8.6 (6.7)
22.5 (15.2)
Primary school daughters
Internalizing
Externalizing
Total Problems
4.9 (4.7)
5.0 (5.4)
15.6 (12.4)
4.2 (4.6)
4.9 (5.2)
14.4 (12.8)
4.8 (6.5)
5.8 (7.3)
15.3 (16.7)
6.3 (4.9)
6.9 (6.6)
20.7 (14.2)
4.8 (3.7)
3.9 (4.4)
13.6 (9.1)1
4.6 (4.6)
3.6 (4.2)
13.6 (10.6)
3.2 (3.6)
3.2 (5.0)
10.1 (10.5)1
5.4 (5.7)
6.3 (7.2)
19.1 (18.0)
5.4 (5.5)
6.2 (5.9)
20.0 (16.1)
Adolescent sons
Internalizing
Externalizing
Total Problems
6.0 (5.4)
5.4 (4.6)
18.0 (14.0)
5.4 (6.1)
5.2 (6.0)
16.7 (16.1)
3.5 (4.4)
3.8 (4.0)1a
11.1 (11.0)1a
5.4 (5.5)
6.4 (5.7)
18.0 (14.2)
4.9 (5.7)
4.8 (3.9)1
15.9 (13.9)
3.5 (4.0)
4.1 (4.8)1
12.2 (11.9)1
2.7 (4.6)1
3.1 (4.2)1
9.4 (12.3)1
4.1 (3.9)
4.7 (4.2)
14.2 (9.7)
5.7 (5.7)
7.1 (7.1)
20.1 (16.5)
Adolescent daughters
Internalizing
Externalizing
Total Problems
7.4 (6.6)
5.2 (4.5)
19.0 (15.2)
6.5 (5.1)
4.6 (4.2)
15.8 (13.8)
5.4 (6.1)
4.2 (3.0)
13.5 (11.1)a
8.5 (7.2)
6.1 (5.9)
21.5 (17.0)
6.5 (5.1)
4.8 (3.0)
15.9 (10.3)
4.9 (5.3)
3.6 (4.8)
12.3 (12.4)
5.3 (5.0)
5.2 (4.9)
15.2 (12.6)
6.5 (6.0)
5.5 (5.8)
18.7 (14.6)
1
p5/0.008 significance of independent t-tests with the norm group.
p5/0.008 significance of independent t-tests with the retrospective group.
Note: Bonferroni-corrected alpha /0.008.
a
5.7 (5.1)
3.6 (3.2)
12.6 (10.9)
Impact parental cancer on children
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Table II. Descriptive statistics for raw scores on the Child Behavior Checklist at T1, T2 and T3, t-tests for differences between primary school and adolescent sons and daughters and children of
the retrospective and norm group
71
72
A. Visser et al.
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daughters at T1 and T3 than did parents of the
norm population.
Adolescent sons. Adolescent sons were perceived by ill
parents as having significantly fewer externalizing
and total problems at T3 compared to sons in the
norm and retrospective group. Spouses reported also
significantly fewer externalizing problems at T1, T2
and T3, fewer total problems at T2 and T3 and
fewer internalizing problems at T3 than spouses in
the norm population. According to spouses, the
prevalence of problems in sons did not differ
significantly from those in sons of the retrospective
group.
Adolescent daughters. In adolescent daughters, ill
parents reported significantly fewer total problems
at T3 than did parents in daughters of the retrospective group. No significant differences were found
in comparison to reported problems in daughters of
the norm group. Spouses reported a similar level of
problems than was found in the retrospective and
norm group.
Prevalence of emotional and behavioral problems
as reported by the adolescents
Adolescents’ self-reports are summarized in Table
III.
Adolescent sons. Adolescent sons reported significantly fewer externalizing problems at T2 and T3
than peers in the norm group did, but no significant
differences were found in comparison to the retrospective group.
Adolescent daughters. Compared to the retrospective
group, significantly fewer internalizing and total
problems were reported at T2 and T3 by adolescent
daughters in the current study.
Clinically elevated scores
At T1, 24% of the primary school sons were
identified as having internalizing problems above
the clinical cut-off point in comparison to 10% in the
norm group (x2 /5.4, p/0.020). Twelve percent
was reported as having externalizing and 16% as
having total problems in comparison to 10% and
8%, respectively, in the norm group (no significant
differences).
Three percent of the primary school daughters
were identified as having clinically-elevated scores on
internalizing and total problems, and 12% on
externalizing problems at T1, compared to 8 10%
in the norm group (no significant differences).
At T1, 32% of the adolescent sons were reported
as having internalizing problems and 26% as having
total problems above the clinical cut-off point, while
9% was found in the norm population (x2 /20.5,
p5/0.001; x2 /10.7, p/0.001, respectively). Three
percent had clinically-elevated scores on externalizing problems.
Among adolescent daughters, at T1 26% were
identified as having internalizing, 20% as having
externalizing and 23% as having total problems
above the clinical cut-off point, percentages higher
than the 89% found in the norm group (x2 /14.9,
p5/0.001; x2 /6.8, p /0.009, x2 /8.2, p /0.004,
respectively).
In general, these percentages decreased over time
to 814%. One exception was found: at T3, 20% of
adolescent sons still had clinically-elevated scores on
internalizing problems (x2 /10.7, p /0.001).
Table III. Descriptive statistics for raw scores on the Youth Self-Report at T1, T2 and T3, t-tests for differences between adolescent sons
and daughters and those of the retrospective and norm group
Self reports
Retrospective group
Norm group
M (SD)
T1
M (SD)
T2
M (SD)
T3
M (SD)
M (SD)
Adolescent sons
Internalizing
Externalizing
Total Problems
9.0 (6.0)
9.6 (5.7)
33.1 (17.9)
6.2 (5.4)
7.8 (5.0)1
24.8 (16.9)
6.9 (6.2)
7.4 (5.1)1
24.2 (17.0)
8.7 (6.8)
10.6 (5.7)
32.4 (17.3)
8.6 (5.8)
11.5 (6.7)
33.7 (16.8)
Adolescent daughters
Internalizing
Externalizing
Total Problems
9.9 (7.1)
9.8 (6.7)
32.3 (18.6)
9.0 (8.3)a
7.6 (5.2)
28.2 (20.1)a
8.1 (8.3)a
8.4 (6.6)
27.0 (20.4)a
13.7 (9.6)
10.6 (6.1)
39.6 (21.6)
10.8 (7.1)
10.0 (6.1)
34.5 (18.0)
1
p5/0.008 significance of independent t-tests with the norm group.
p5/0.008 significance of independent t-tests with the retrospective group.
Note: Bonferroni-corrected alpha/0.008.
a
73
Impact parental cancer on children
Changes in the prevalence of problems over time
Reports from ill parents, spouses and adolescents
revealed a significant decrease in total problems over
time. Spouses and adolescents reported a significant
decrease in externalizing and ill parents and adolescents in internalizing problems over time. No
significant effects of group or interactive effect of
group and time were found (Table IV).
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Stability of problems
Relationships between T1 and T2, T2 and T3, and
T1 and T3 in internalizing, externalizing and total
problems were strong (p 5/0.001) with correlation
coefficients ranging from r /0.65 to r /0.88. This
means that on an individual level children with high
scores at T1 also scored high at later time points
(Table V).
Agreement among informants at T1
High levels of agreement were found between fathers
and mothers regarding primary school sons and
daughters, and adolescent sons on internalizing
(r/0.65, r/0.56, r /0.67, respectively), externalizing (r/0.53, r/0.69, r /0.51, respectively), and
total problems (r /0.67, r /0.70, r/0.50, respectively). However, levels of agreement on adolescent
daughters’ internalizing (r/0.06), externalizing
(r/20) and total problems (r /0.19) were low.
Levels of agreement between adolescent sons and
fathers, and between adolescent sons and mothers
were low to moderate on internalizing (r/0.27, r /
0.34, respectively), externalizing (r /0.39, r /0.20)
and total problems (r /0.33, r/24). Between adolescent daughters and fathers, low agreement was
found on internalizing (r/0.02) and total problems (r /0.18), while agreement on externalizing
was high (r /0.54). Agreement between adolescent
daughters and mothers was high on internalizing
(r/0.67), externalizing (r /0.66) and total problems (r /0.79).
Discussion
The current study focused on the prevalence of and
change in problems of children during the first year
after the parent’s cancer diagnosis. Primary school
and adolescent children were reported to have
similar levels of emotional and behavioral problems
within 4 months after the parent’s cancer diagnosis
to children of the norm group and children of
parents diagnosed 1 to 5 years ago (retrospective
group). However, 20 25% of the primary school
and adolescent sons and adolescent daughters were
reported as having scores in the clinical range,
particularly for internalizing and/or total problems
at the first measurement.
Our results generally confirm the results of previous studies that have also found that children of
parents recently diagnosed with cancer had an
amount of problems comparable to norm group
children [4,19]. Other studies have also reported
that a high percentage of children had clinicallyelevated scores on emotional problems in the first
months after the parent’s diagnosis [20,21]. However, the groups identified as being vulnerable
differed. Earlier studies found clinically-elevated
scores primarily among adolescent daughters
[2,4,8]. Interestingly, the current study also found
a high percentage of primary school and adolescent
sons having clinically-elevated scores. Studies focusing on gender differences have not identified adolescent sons as being vulnerable. A possible explanation
for this difference may be that the current study
focused on the prevalence of internalizing problems
and not just anxiety and depression. The internalizing scale measures anxiety and depression, but also
Table IV. Repeated measures analyses of variance
Ill parents
Test of overall trend
Effects
Internalizing
Externalizing
Total Problems
Time
Group1
Interaction
Time
Group1
Interaction
Time
Group1
Interaction
F
8.3
1.6
1.3
1.9
3.7
1.6
18.1
0.7
2.1
Spouses
Test of overall trend
Adolescents
Test of overall trend
p
F
p
5/0.001
ns
ns
ns
ns
ns
5/0.001
ns
ns
4.4
0.7
1.0
8.4
1.1
0.6
9.3
0.8
0.7
ns
ns
ns
0.002
ns
ns
5/0.001
ns
ns
1
Four groups were distinguished, namely primary school and adolescent sons and daughters.
Note: Bonferroni-corrected alpha/0.005.
F
6.0
1.0
0.9
6.9
0.2
0.4
10.8
0.2
0.7
p
0.005
ns
ns
5/0.001
ns
ns
5/0.001
ns
ns
74
A. Visser et al.
Table V. Relationships between earlier and later internalizing, externalizingand total problems
Measurement times
Internalizing
Externalizing
Total Problems
T1 T2
T2 T3
T1 T3
T1 T2
T2 T3
T1 T3
T1 T2
T2 T3
T1 T3
Ill parents
r
0.85
0.71
0.69
0.77
0.65
0.68
0.88
0.72
0.74
Spouses
r
Adolescents
r
0.72
0.67
0.67
0.67
0.74
0.74
0.78
0.82
0.79
0.73
0.79
0.81
0.69
0.76
0.73
0.74
0.80
0.77
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All correlation coefficients were significant at a p 5/0.001 level.
measures withdrawal and somatic complaints. Earlier studies have shown the sons are less expressive of
emotions and react to their parent’s illness by withdrawing [22].
Our study suggests, in line with others, that
although some children do experience problems,
the majority of children do not experience an
increase of problems during the first year after the
parent’s diagnosis. A possible explanation is that
many children will try to protect their parents in this
stressful period and may, therefore, mask their true
emotions. Children begin to show their true feelings
when the family gets back to ‘‘normal’’ life again
[23,24]. This could explain why children in the
retrospective study and other studies that have
focused on long term effects of a parent with cancer
have been reported to have elevated levels of
problems [5,7]. Selection bias may be another
possible explanation for our findings. Children in
families who dropped out of the study reported
having more problems than families who continued
participation. This suggests that the results of the
current study underestimate the extent of problems
in children of parents with cancer.
In the course of the year, the amount of reported
emotional and behavioral problems decreased and
children were reported to have even fewer problems
than children in the norm and retrospective groups.
A decrease of problems over time was also found in
an earlier study [4]. Although a decline in problems
was found for the group as a whole, some children’s
problems did not decrease. The level of problems
at the first measurement was a relatively strong
predictor of problems at later measurements. These
results are consistent with a previous study showing high levels of continuity in anxiety/depression
in children over time [20]. How vulnerable a
child is depends on biological, psychological and
social factors [11]. Children who initially experience
fewer problems may have more personal and environmental resources (personality, family functioning or social support) that protect them from
long-term problems, while children who experience
more problems may have fewer resources to protect
them.
The high levels of agreement between parents
found in the present study is conform findings from
other studies [6,14,25]. We did find one exception:
levels of agreement between parents on the problems
reported in adolescent daughters were low. Mothers
might judge adolescent daughters’ behaviour more
accurately than fathers because daughters are more
likely to discuss their worries and problems with
their mothers [6]. This suggestion is supported by
the finding that levels of agreement between mothers
and adolescent daughters appeared high, while levels
of agreement between fathers and daughters were
low. Levels of agreement between parents and
adolescent sons were low. It is believed that parents
are less aware of the impact of illness on adolescent
sons because parents have less contact with adolescent sons and sons talk less often about their
experiences and emotions [26].
Limitations
The current study is one of the few prospective
studies investigating children’s functioning during
the first year after a parent’s cancer diagnosis where
information has been gathered from various sources.
However, this study has a number of limitations.
Participating in a research study during this hectic
period of time can seem to be daunting task.
Families were approached carefully, with a great
deal of attention. Nonetheless, half of the families
approached declined to participate, which may have
led to selection bias. The reasons given by the nonparticipating families varied considerably and we
cannot determine whether the presence of problems
has been under- or over-reported. On the one hand,
it is possible that families who decline did so because
they were experiencing high levels of problems. On
the other hand, two reasons stated for not participating were a positive prognosis and not having
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Impact parental cancer on children
informed the children, which could mean that the
impact of the illness in those families who declined
was small. A second source of bias may come from
the number of families who dropped out of the study
after the first measurement. As discussed earlier,
children who continued in the study had fewer
problems than children who dropped out.
An additional limitation is that a general questionnaire was used to measure the children’s functioning. It is possible that this instrument is not
sensitive enough to measure consequences related to
having a parent diagnosed with cancer. Questionnaires specifically developed for this situation or
qualitative research methods could provide more
insight into problems that may be prevalent in this
situation or in this phase of the illness.
Future research and implications
Future researchers may need to pay more attention
to how patients are approached for participation so
that a representative sample group is procured and
the consequences of having a parent with cancer can
be more fully mapped out. In order to facilitate early
recognition of children at risk, more longitudinal
studies are needed to investigate protective and risk
factors, such as temperament, coping and family
functioning.
Results of the current study may heighten awareness of health care providers that some children
may have difficulty adapting to the parent’s illness.
Health care providers may assist parents in supporting their children in the overwhelming early stage of
cancer and to be specifically sensitive to children at
risk. Results also showed that different informants
may paint a different picture of how a child functions. Therefore, health care providers should provide parents with information to heighten their
awareness of their children’s feelings and give
children the chance to share their emotions with
their parents under these circumstances.
Acknowledgements
The authors would like to thank the families for
participating, as well as the physicians and nurses of
the University Medical Center Groningen for their
contribution to patient recruitment. We would like
to acknowledge the financial support received from
the Dutch Cancer Society (grant number RUG
2000-2333). Finally, we would like to thank Ineke
Bakker, who made an important contribution to the
collection of data.
75
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