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Journal of Psychosocial
Oncology
Publication details, including instructions for
authors and subscription information:
http://www.tandfonline.com/loi/wjpo20
A Group Intervention for
Siblings of Pediatric Cancer
Patients
Maru Barrera PhD
a a
, Joanna Y. Y. Chung PhD
b
&
Carly F. Fleming MEd
c
a
Department of Psychology and Hematology/
Oncology Program , Hospital for Sick Children ,
555 University Avenue, Toronto, Ontario, M5G 1X8,
Canada
b
Department of Psychology , British Columbia's
Children's Hospital , Vancouver, British Columbia
c
Hematology/Oncology Program , The Hospital for
Sick Children , Toronto
Published online: 25 Sep 2008.
To cite this article: Maru Barrera PhD , Joanna Y. Y. Chung PhD & Carly F. Fleming
MEd (2005) A Group Intervention for Siblings of Pediatric Cancer Patients, Journal of
Psychosocial Oncology, 22:2, 21-39, DOI: 10.1300/J077v22n02_02
To link to this article: http://dx.doi.org/10.1300/J077v22n02_02
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A Group Intervention for Siblings
of Pediatric Cancer Patients
Maru Barrera, PhD
Joanna Y. Y. Chung, PhD
Carly F. Fleming, MEd
ABSTRACT. A group intervention to reduce emotional and behavioral
problems in siblings of children with cancer was evaluated. Forty-seven
siblings aged 6 to 14 years participated in seven groups, with 4 to 9 sib-
lings in each group. Groups consisted of eight weekly two-hour sessions
guided by a manual. Four assessments were conducted: two before the
intervention and two after the intervention. Children completed self-re-
port measures of anxiety, depression, and behavior; parents reported on
siblings’ anxiety and behavior. After the intervention, siblings reported
Dr. Barrera is a Registered Psychologist and an Associate Scientist, Department of
Psychology and Hematology/Oncology Program, The Hospital for Sick Children, 555
University Avenue, Toronto, Ontario M5G 1X8, Canada (E-mail: maru.barrera@
sickkids.ca). Dr. Chung is a Registered Psychologist, Department of Psychology, Brit-
ish Columbia’s Children’s Hospital, Vancouver, British Columbia. Ms. Fleming is
Program Coordinator, Hematology/Oncology Program, The Hospital for Sick Chil-
dren, Toronto.
The authors wish to express their gratitude to the following: the families and chil-
dren who participated in the Siblings Coping Together (SCT) program; Drs. Norma
D’Agostino, Karen Sumbler, Alisa Kenny, Brian Feldman, and Sunita Vohra for their
comments on an early version of the manuscript; Dr. Mohamed Abdolell for his statis-
tical advice; and Dr. Charmaine Miranda, Joanne Bonanno, and Danielle Kuczynski
for their assistance in running SCT groups.
The authors also wish to thank Families of Children with Cancer for funding part of
the project and the National Cancer Institute of Canada and Candlelighters Canada for
supporting Dr. Chung’s studentship.
Journal of Psychosocial Oncology, Vol. 22(2) 2004
http://www.haworthpress.com/web/JPO
 2004 by The Haworth Press, Inc. All rights reserved.
Digital Object Identifier: 10.1300/J077v22n02_02 21
Please note that this electronic prepublication galley may contain typographical errors and may be missing
artwork, such as charts, photographs, etc. Pagination in this version will differ from the published version.
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significantly reduced symptoms of anxiety and depression, and parents
reported significant reductions in siblings’ anxiety and behavior prob-
lems. An interaction between intervention, age, and gender indicated
that adolescent girls had more depressive symptoms than adolescent
boys did before the intervention and younger girls did after the interven-
tion. The findings suggest that group intervention benefits siblings of
children with cancer, with age and gender influencing this effect. [Arti-
cle copies available for a fee from The Haworth Document Delivery Service:
1-800-HAWORTH. E-mail address: <docdelivery@haworthpress.com> Website:
<http://www.HaworthPress.com>  2004 by The Haworth Press, Inc. All rights
reserved.]
KEYWORDS. Siblings, pediatric cancer, group intervention, psycho-
logical functioning
Families of children with cancer must adjust to the implications of the
diagnosis and the challenges presented by medical treatment. Changes in
daily life after a diagnosis of pediatric cancer may result in chronic dis-
tress for family members, including siblings, whose well-being is often
overlooked. This study focuses on a group intervention program de-
signed to prevent or reduce psychological difficulties in siblings of chil-
dren with cancer.
REVIEW OF THE LITERATURE
Psychological Adjustment of Siblings
The diagnosis and treatment of pediatric cancer have been associated
with behavior problems, such as sleeping problems and acting out, and
increased maturation in healthy siblings (Barbarin et al., 1995; Chesler,
Allswede, & Barbarin, 1992; Havermans & Eiser, 1994; Heffernan &
Zanelli, 1997; Murray, 1999; Sloper & While, 1996). In a large collabo-
rative study, Sahler et al. (1994) estimated that 63% of siblings of chil-
dren with cancer experience some psychological adjustment difficulties
at any one point after the diagnosis. The impact of pediatric cancer on
healthy siblings is likely to depend on their developmental level (Murray,
2000). However, previous studies have been inconclusive regarding age
and gender differences. Siblings aged 6 to 12 years have been reported
22 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
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to exhibit more maladaptive levels of anxiety and depression and more
behavior problems than the ill children (Spinetta et al., 1999) or older
siblings do (Sahler et al., 1994; Sargent et al., 1995). Siblings over 11
years of age may be less involved with the family and have more com-
plaints about family life than do younger siblings (Madan-Swain et al.,
1993). On the other hand, among firstborn or other siblings older than
the patient, parents have also reported increased maturity, supportive-
ness, and independence (Barbarin et al., 1995).
In the general population and among the offspring of parents who
have cancer, adolescent girls have a propensity for expressing more
symptoms of depression than younger girls or boys do (Chubb, Fertman, &
Ross, 1997; Compas et al., 1996; Fleming & Offord, 1990). Clearly,
there is a need for further investigation of age and gender differences in
siblings’ psychological adjustment to the cancer experience in general
and in the context of intervention specifically.
Psychological Interventions for Siblings
To our knowledge, the only published psychological interventions
for siblings of children with cancer have been in a group format (Ad-
ams-Greenly et al., 1986; Barrera et al., 2002; Bedway & Hartkopf-
Smith, 1996; Chung, 1999; Dolgin et al., 1997; Heiney et al., 1990;
Houtzager, Grootenhuis, & Last, 2001; Sahler & Carpenter, 1989).
These group interventions have varied in form from a one-day program
(Bedway & Hartkopf-Smith, 1996) to a longer-term summer program
(e.g., Sahler & Carpenter, 1989). Formal evaluation of these programs
has been limited.
Quantitative methodology using pre- and postevaluation has been
used in some studies. Five-week, six-week, and eight-week group
interventions (Houtzager, Grootenhuis, & Last, 2001; Dolgin et al., 1997;
Barrera et al., 2002, respectively) suggested improvements in siblings’
moods, interpersonal relations, and reduction of self-reported symptoms
of anxiety. In Dolgin et al.’s study (1997), data were reported from a
one-time implementation of the group program, and no efforts were made
to control for factors that may have confounded the effects of the
intervention. In Barrera et al.’s study (2002), siblings’ self-reports sug-
gestedreducedsymptoms of anxietyanddepressionafter thegroupinterven-
tion, but the sample was too small to generalize these findings. Neither study
controlled for the reliability of the pre and post comparisons.
Barrera, Chung, and Fleming 23
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THE “SIBLINGS COPING TOGETHER” PROGRAM
The conceptual model adapted for the Siblings Coping Together
(SCT) intervention program discussed in this article has been described
in detail elsewhere (see Barrera et al., 2002; Chung et al., 1999). Briefly,
we used cognitive behavior theory (e.g., Kendall, 2000) to conceptual-
ize the behavioral difficulties encountered by siblings of children with
cancer and to develop a group intervention to address them. Siblings
may develop behavioral or emotional difficulties as a response to the
increased time parents spend with the ill child (during hospitalizations
and outpatient clinic visits). Siblings also may develop distorted cogni-
tions regarding their status in the family and may experience feelings of
abandonment from or of being less valued by their parents than the ill
child is, resentment toward the ill child, and guilt for being healthy. The
SCT group program was designed to address siblings’ behavioral and
emotional difficulties as well as their distorted views (cognitions) re-
lated to their experience of pediatric cancer.
The purpose of the present study was twofold: to evaluate the effects
of the SCT program on siblings’ symptoms of anxiety, depression, and
problem behavior and to examine the role of age and gender in siblings’
psychological adjustment to pediatric cancer within the context of
group intervention. On the basis of previous empirical research, we hy-
pothesized that (1) compared to baseline assessments, there would be a
reduction in siblings’ symptoms of anxiety and depression and behavior
problems after the intervention and (2) adolescent girls would manifest
more depressive symptoms than adolescent boys and younger children
of either gender would at both baseline and postintervention assess-
ments.
METHOD
Participants
Between January 1998 and May 2001, 42 siblings (17 boys and 25
girls) of children being treated for cancer in a large pediatric center par-
ticipated in seven consecutive SCT intervention groups. The siblings
ranged in age from 6 to 14 years (M = 9.93 years, SD = 2.38 years). Each
group consisted of 4 to 9 children of similar developmental age and ap-
proximately equal numbers of boys and girls to ensure group cohesion
and to plan developmentally appropriate activities for each session. The
24 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
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criteria for inclusion were (1) having a brother or sister with cancer (on
or off treatment), (2) being identified by parents as having behavioral or
emotional difficulties (e.g., irritability, acting out, changes in mood)
since the ill child began treatment, and (3) residing within 100 kilome-
ters of the hospital. Siblings who had a developmental or neurological
disorder that impeded their ability to understand and to communicate
verbally in a group or whose ill brother or sister died before the program
began were excluded.
Thirty-five of the 42 siblings (83%) came from Caucasian families; 2
of the remaining siblings were Asian-Canadian, 1 was Afro-Canadian,
and 2 were categorized as mixed Native Canadian. Most of the siblings
came from families with middle-class socioeconomic backgrounds
(Hollingshead, 1975): Level I (9), Level II (11), Level III (10), Level IV
(6), and level unknown (6). All but 3 siblings came from a two-parent
family. The majority of siblings (26) were older than the ill child, and 36
of the ill children were on active treatment. The majority of patients (22)
had been diagnosed with leukemia; the remaining diagnoses were sar-
coma (6), brain tumor (5), lymphoma (4), neuroblastoma (2), Wilm’s
tumor (2), and Other (1).
Design and Procedure
The study was approved by the Institutional Ethics Review Board.
Although a randomized controlled trial is considered to be the gold stan-
dard for assessing the efficacy of medical and psychological interven-
tions (Chambless & Hollon, 1998), such a study design is not always
feasible or optimal (Kazak et al., 1994). This is especially true when the
focus of the research involves a population, such as siblings of children
with cancer whose families are overburdened with the care of the ill
child and care of the healthy siblings is often delegated to friends and
relatives (Barrera et al., 2002; Spinetta et al., 1999). Thus, we used the
“time-series” design for the study. The design included two baseline as-
sessments (Pre 1 and Pre 2) to control for a major threat to validity, the
passage of time (Campbell & Stanley, 1972); eight group intervention
sessions; and two postintervention assessments, one immediately after
the last intervention session (Post 1) and a follow-up assessment 6 to 12
months later (Post 2). The two postintervention assessments tested the
consistency of the intervention effect. The six-month range of the Post 2
assessment period was the result of the varying availability of partici-
pants for completion of the instruments.
Barrera, Chung, and Fleming 25
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Siblings were referred either by staff in the hematology/oncology
program after a parent expressed concerns about the sibling’s mood or
behavior or by a parent who contacted the program coordinator after
reading about the SCT group program (a newsletter or flyers for parents
were posted in the treatment unit). One parent of each potential partici-
pant was interviewed by telephone to screen for inclusion criteria and to
obtain demographic information. Siblings also were interviewed by
phone, after parents provided verbal consent, to screen for their commu-
nication skills and willingness to participate.
During the initial assessment, siblings and parents read or were read
(if under Grade 3 reading level in the case of siblings) the consent or
assent forms and completed the assessment. The same parent was
asked to complete the parent forms at each assessment. Seven siblings
completed the Pre 1 assessment and 42 siblings (including the initial
7) completed the Pre 2 assessment. The difference in the response rate
between the two assessments speaks to the greatest challenge in con-
ducting clinical research with this population. First, we needed to en-
sure that the siblings had two preintervention assessments eight weeks
apart. Given the demands of caring for the ill child, many parents
found it difficult to come to the centre eight weeks before the sched-
uled start of the group. Second, we needed enough siblings to run a
group and to schedule a starting date. Unfortunately, some siblings
were referred too close to the groups’ starting date, preventing us from
obtaining a Pre 1 assessment. The Pre 1 and Pre 2 groups of siblings
were compared with respect to the ill child’s age, gender, socioeco-
nomic, and disease characteristics (on or off treatment) using either a
t-test or chi-square analysis. The groups did not differ significantly on
demographic or disease characteristics.
Forty siblings completed the Post 1 assessment, but only 14 com-
pleted the Post 2 assessment despite our efforts to encourage families to
do so. The siblings who did and those who did not complete the Post 2
assessment did not differ significantly in gender and age; however, they
did differ significantly with respect to socioeconomic status (χ2 = 9.0, p <
.05). The children who did not complete the Post 2 assessment came
from families with lower socioeconomic status. It is possible that those
families felt more overwhelmed with daily life, as families with lower
socioeconomic status often do. The following reasons were given for
not completing the SCT program or parts of the assessment protocol:
changes in the ill child’s health status, loss of interest in the study, feel-
ings of wanting to get family life “back to normal,” and conflict be-
tween adolescents and parents.
26 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
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Measures
Instruments completed by siblings. All siblings completed the Child
Depression Inventory (CDI), the self-report State-Trait Anxiety Inven-
tory for Children (STAIC), and the Sibling Group Satisfaction (SGS)
questionnaire. Siblings aged 11 years and older also completed the
Youth Self-Report (YSR), a measure of behavior problems.
The CDI is a 27-item, self-report, symptom-oriented depression scale
(Kovacs, 1992). It has an acceptable test-retest reliability coefficient of
.83 at three weeks and a coefficient of .41 to .69 at one year and has ade-
quate validity (Kovacs, 1992). The total T-score was used for analysis.
The alpha coefficient obtained in our study was .68.
The 20-item State Anxiety subscale of the STAIC (Spielberger,
1983) was used in the study. Adequate reliability and validity were ob-
tained in Spielberger’s normative sample: .82 for boys and .87 for girls.
In our study, the alpha coefficient obtained was .65.
The SGS was constructed by our research team and has been de-
scribed in more detail elsewhere (Barrera et al., 2002). The version
completed by siblings consisted of seven questions: for example, “How
useful was the group in reducing your fears/worries about your brother/
sister’s cancer?” Respondents chose the answer that applied best to each
question on a scale ranging from 1 (Not helpful/useful) to 5 (Help-
ful/useful).
The YSR consists of 112 items that assess competencies, total prob-
lems and internalizing and externalizing behaviors (Achenbach, 1991b).
For the present study, the alpha coefficient was .85.
Instruments completed by parents. Parents completed the STAIC
adapted for parents, the version of the SGS for parents, and the Child
Behavior Checklist (CBCL) and provided demographic information
about the family and medical information about the ill child. Thirty-four
(81%) of the participating parents were mothers and 8 were fathers.
The STAIC-Parent Form was adapted from Spielberger (1983) by
our research group to be identical in form and content to the STAIC.
The scores on the State Anxiety subscale were used for analysis. The al-
pha coefficient for the present study was .68.
The version of the SGS adapted for parents consisted of six ques-
tions: For example, “How useful was the group in improving your
child’s behavior?” The parents also selected answers ranging from 1 to 5.
Barrera, Chung, and Fleming 27
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The CBCL is a 113-item instrument used to assess children’s compe-
tencies, total problems, and internalizing and externalizing behaviors
(Achenbach, 1991a). Test-retest reliability and validity for all scores are
adequate (.89 and .90 at one week) for the total behavior problem scales.
In the present study, the alpha coefficient was .78.
The Intervention Program
The SCT program consisted of eight weekly sessions of two hours
each, conducted in a large room in a hospital setting. Eight sessions
were planned based on our pilot work (Barrera et al., 2002). Groups
were facilitated by two therapists (psychology graduate students and re-
search assistants) under the supervision of a registered psychologist. In
accordance with guidelines of the American Psychological Association
(Chambless & Hollon, 1998), a detailed manual was written to address
siblings’ thoughts and feelings and to develop coping strategies based
on the participants’ developmental level and specific needs (Barrera et
al., 2002; Chung et al., 1999). The manual describes the conceptual
framework, intervention approaches, and activities for each session. Al-
though each session had predetermined themes and goals, new issues
based on recent experiences in participants’ daily lives were integrated
into the program.
The themes of Session 1 were development of group rapport and
rules (e.g., respect each other, be on time) and introduction of partici-
pants and their families. Medical information related to cancer and its
treatment was the theme of Session 2. A nurse attended this session to
talk with siblings for 30 minutes about cancer cells, diagnoses, and
treatments, using age-appropriate and hands-on visual aids. Siblings
prepared questions before the nurse’s visit and were encouraged to han-
dle equipment, such as a central line and syringes.
Sessions 3 to 6 each had a specific psychosocial focus: the family
context (e.g., how cancer has affected each member of the family,
changes that have occurred since the ill child’s treatment began), sib-
lings’ feelings (e.g., resentment when parents spend too much time with
the ill child, sadness when the parents and the ill child are in the hospital
and the sibling is staying with relatives), relationships between siblings
(e.g., not spending enough time together because of the demands of
treatment, jealousy related to differential treatment), and the school
context (e.g., problems with peers, difficulty paying attention when
thinking about the ill child).
28 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
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Session 7 focused on the generation of hope for each sibling’s own fu-
ture and on generalization of coping and problem-solving strategies lear-
ned in the group. Session 8 was a wrap-up and “graduation.” Children re-
ceived a certificate of participation at a brief ceremonyattendedbyparents.
Each session began with an “ice-breaker” activity, such as playing a
cooperative story-building game, followed by an activity to set the
scene for the main theme (e.g., a list of words associated with cancer). A
review of homework followed, either as a review of the information
covered in the previous session (finishing a picture of a favorite activity
with peers) or as preparation for the session’s main activity. Finally, the
group participated in activities specifically designed to address the ses-
sion’s theme. For example, in Session 4, participants made a “feeling
tree” based on feelings that were generated through group discussion.
The subsequent activity involved role-playing strategies to make them-
selves feel better when feeling sad or angry (more details are included in
the SCT manual; Chung et al., 1999).
Data Analysis
To assess the test-retest reliability of the baseline data, we conducted
both paired t-tests and correlations. For the main analysis of intervention
effects, we conducted separate repeated measures ANOVAs for each out-
come measure, using time (from Pre 2 to Post 1), age (younger: 6 to 10
years, older: 11 to 14 years), and gender. To assess the consistency of the
postintervention effects, t-tests and correlations for each measure were
conducted using the subsample of 14 participants who completed both
the Post 1 and Post 2 assessments. As Drotar (2002) suggested, we have
reported effect sizes and significance levels in Results.
RESULTS
Preliminary Analysis
The following correlations using the subsample of participants (7
siblings and 7 parents) who completed the two baseline assessments
were found to be significant: parents’ reports of siblings’ anxiety and
behavior problems (r = .934, p < .01, and r = .667, p < .05, respectively)
and siblings’ reports of anxiety (r = .520, p < .05). Paired t-tests yielded
no significant differences on any of the measures. Thus, the correlations
indicate adequate test-retest reliability for the two baseline assessments
Barrera, Chung, and Fleming 29
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across two of the three measures, one of which (the STAIC) was com-
pleted by both siblings and parents.
Pre- and Post-Intervention Effects
An ANOVA using the siblings’ self-reports of depression indicated a
main effect of time suggesting a significant reduction in depressive
symptoms at the end of the intervention (Pre: M = 49.85, SD = 13.71;
Post: M = 45.32, SD = 8.47; F[1,33] = 8.28, p = .007, effect size = .20).
Siblings’ self-reports of anxiety (Pre: M = 31.30, SD = 7.55; Post: M =
27.92, SD = 6.49; F[1,34] = 8.11, p = .007, effect size = .19) and par-
ents’ reports of siblings’ anxiety (Pre: M = 34.99, SD = 7.10; Post: M =
30.62, SD = 5.35; F[1,35] = 18.80, p = .000; effect size = .35) indicated
a significant reduction of siblings’ symptoms of anxiety. No significant
time effect was found in the siblings’ self-reports or in the parents’ re-
ports of behavior problems.
Effects of Age, Gender, and the Intervention
The ANOVA for the self-reports of depression scores indicated a sig-
nificant three-way interaction of time, age, and gender (F[1,33] = 6.37,
p = .017; effect size = .16), which is depicted in Figure 1. Analysis of
this interaction using t-tests with a Bonferroni correction (p < .02)
showed the following trends:
• Adolescent girls had higher depression scores before the interven-
tion than adolescent boys did (M = 59.78, SD = 21.08, and M =
43.50, SD = 7.00, respectively; t[17] = Ϫ2.21, p < .05).
• Adolescent girls had higher depression scores after the interven-
tion than younger girls did (M = 52.71, SD = 11.73, and M = 43.00,
SD = 6.50, respectively; t[21] = 2.82, p < .05).
• Younger boys had the greatest decrease in depression scores from
pre- to postintervention (M = 53.86, SD = 13.75, and M = 42.57,
SD = 7.09, respectively; t[6] = 3.00, p <. 05).
The mean group scores of the adolescent girls were at the borderline
clinical range before the intervention (with a large standard deviation)
and returned to normative levels after the intervention. In addition, there
was a significant age ϫ gender interaction (F[1,33] = 6.80, p < .05, ef-
fect size = .17), which confirmed the findings of the three-way interac-
tion described above. Adolescent girls tended to have higher depression
30 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
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scores compared with younger girls (t[22] = 2.63, p < .05) and adoles-
cent boys (t[17] = Ϫ2.43, p < .05).
For parents’ reports of siblings’ anxiety scores, there was a signifi-
cant age ϫ gender interaction (F[1,35] = 4.18, p < .05, effect size = .10).
Analysis of this interaction yielded a pattern similar to that of the sib-
lings’ self-reports of depression scores: Both before and after the inter-
vention, older girls tended to have higher anxiety scores than younger
girls did (Pre: M = 37.00, SD = 7.41; Post: M = 32.63, SD = 6.78; and
Pre: M = 33.75, SD = 5.00, Post: M = 29.07, SD = 4.01, respectively;
t[22] = 1.64, p = .10). Older boys tended to have lower anxiety scores
than younger boys did both before and after the intervention (Pre: M =
33.20, SD = 7.94; Post: M = 29.44, SD = 2.01; and Pre: M = 38.07, SD =
9.44; Post: M = 33.14, SD = 7.99, respectively; t[15] = Ϫ1.27, p Յ .10).
Follow-Up Effects
For the subsample of 14 siblings who completed the follow-up mea-
sures, the mean scores from postintervention to follow-up were similar
among self-reports of depression (Post 1: M = 43.07; Post 2 M = 41.93)
and anxiety (Post 1: M = 26.14; Post 2: M = 26.29) as well as parents’ re-
Barrera, Chung, and Fleming 31
ADOLESCENTS CHILDREN*
MeanCDTTotalScore
Pre-Intervention
Post-Intervention
Pre-Intervention
Post-Intervention
Older Males Older Females Younger Males Younger Females
60
55
50
45
40
FIGURE 1. Siblings’ scores on the Child Depression Inventory, by age, time,
and gender. (*The clinical range of the instrument begins at T-score = 60.)
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ports of sibling anxiety (Post 1: M = 31.21; Post 2: M = 30.89). All
paired t-tests indicated no significant difference.
Comparisons of parents’ reports of behavior problems yielded a sig-
nificant reduction from postintervention to follow-up (Post 1: M =
48.71; Post 2: M = 42.86; t[13] = 2.00, p < .05). No analyses were con-
ducted on siblings’ behavior scores because at follow-up only four sib-
lings were old enough to complete the YSR.
Correlational data indicated a similar pattern. Siblings’ self-report
scores on depression and anxiety (r = .632, p < .05, and r = .612, p < .05,
respectively) and parents’ scores on siblings’ anxiety (r = .544, p < .05)
were consistent from postintervention to follow-up.
Group Satisfaction
The numbers of siblings who found the group to be “Very helpful” or
“Somewhat helpful” cited the following: improving their knowledge of
pediatric cancer (32), reducing their worries about pediatric cancer (30),
expressing their feelings to others (27), dealing with their brother or sis-
ter’s cancer (26), and getting along with other members of the family
(26). Many siblings expressed sadness about the termination of the pro-
gram and asked if they could enroll in the group again.
The majority of parents reported reduction of the sibling’s anxiety
(34) and family distress (23) and improvements in the sibling’s behav-
ior (32) and expression of feelings (29). In addition, many parents wrote
comments saying the sibling was less irritable, was more cooperative at
home, and generally appeared to be happier. One parent wrote: “This
group was very good for my child. I wish it would have lasted longer.”
Another parent said: “My child told me that the group was important to
him because he got to express his feelings.”
DISCUSSION
The present study provides some evidence regarding the benefits of a
manual-guided psychological group intervention for siblings of chil-
dren with cancer who were experiencing some behavioral problems,
emotional difficulties, or both related to pediatric cancer in the family
before the intervention. The study also illustrates the role of age and
gender in the psychological adjustment of siblings before and after the
intervention. In addition, it highlights the importance of including more
32 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
than one informant and several measures of outcome in studies of chil-
dren. These findings are discussed further below.
Benefits of the Intervention
The comparisons of siblings’ self-reports on depression and anxiety
before and after the intervention suggests that the siblings’ psychologi-
cal adjustment improved after the intervention. This finding was sup-
ported by parents’ reports of siblings’ anxiety, which provided another
perspective concerning the effects of the intervention. The reliability of
these findings is supported by the consistency of scores on measures of
anxiety and behavior before the group intervention and by the scores on
depression and anxiety at the follow-up assessment as well as by sib-
lings’ and parents’ subjective reports of satisfaction at the end of the in-
tervention. Notwithstanding the limitations of the study, which are
described below, the combined data collected provide substantial evi-
dence of the intervention’s effects.
Given that our sample was not selected on the basis of clinical levels
of depression, anxiety, or behavior problems, it was not surprising that
the intervention effect sizes were weak and that the group mean scores
for the measures were within normal ranges at baseline. This renders the
results conservative because there was little room for improvement, yet
improvement seems to have occurred as a result of the intervention. Al-
though the small effect size and the lack of a control group may make
these findings inconclusive with regard to the intervention’s efficacy,
they seem to have clinical significance and relevance. As Kazak et al.
(1994) pointed out, in siblings of children with cancer, “it is likely that
the types of differences seen are not indicative of psychopathology, but
are related to more subtle aspects of adjustment and coping” (p. 75).
According to Kazdin (1999), clinical significance refers to the practi-
cal value and the importance of the effect of an intervention in the
child’s everyday life. Kazdin suggested that, depending on the type of
problems and goals of treatment, clinical significance can be measured
in several ways: by small changes in symptoms that affect the individ-
ual’s everyday life, by subjective judgments, and by return to normative
levels. In the current study, the siblings who participated in the SCT
group were referred for psychological intervention through the hema-
tology/oncology program because of parental concerns about their
mood and behavior. Thus, subtle improvements in the areas of parental
concerns had practical value for these families. Additional evidence of
clinical significance of the group intervention was provided by the sib-
Barrera, Chung, and Fleming 33
Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
lings’ and parents’ reported reduction of symptoms of depression and
anxiety at the end of intervention, by the adolescent girls’ return to nor-
mative levels of depression, and by the siblings’ and parents’ subjective
ratings of satisfaction and the comments they provided. The combined
sources of evidence suggest that the group intervention contributed to
the reduction of the burden of suffering in these families and therefore
improved their overall quality of life.
We suggest that the reasons for the intervention’s clinical signifi-
cance were related to siblings’ increased understanding of pediatric
cancer and its effects on every family member, their role and status
within the family, and the acquisition of concrete strategies regarding
how to cope with their situation. In addition, by enrolling the sibling in
the SCT group, parents demonstrated their concern for patients’ sib-
lings and made efforts to spend special time with them. As one father
put it, “We look forward to having ‘triple D days’: Daddy-Daugh-
ter-Days.”
The present findings are consistent with a previous preliminary study
of siblings’ self-reports (Barrera et al., 2002), but they expand the ear-
lier findings with methodological improvements: repeated measures at
baseline to test for one major threat to validity, the passage of time; a
follow-up assessment; and a larger sample. The study also expanded
Dolgin et al.’s previous suggestions (1997) of emotional improvements
in siblings after a group intervention by using standardized measures of
depression, anxiety, and behavior problems.
Siblings’ age and gender appeared to be critical factors in psycholog-
ical adjustment to pediatric cancer in general as well as with respect to
intervention, which confirmed previous suggestions (e.g., Sahler et al.,
1994). The greatest reduction in depression scores after the SCT group
was in young boys, which may indicate that they are the most receptive
to group intervention during this time of family stress. Adolescent girls
in general reported the greatest symptoms of depression at baseline, al-
though their scores were in the normal range after the intervention. Ad-
olescent girls also displayed more anxiety than younger girls did,
supporting the notion that symptoms of anxiety and depression tap simi-
lar internalizing processes (Achenbach, 1991a).
The results regarding depression are consistent with previous reports
of the general population of adolescent females and of adolescent fe-
males whose parents have cancer (e.g., Chubb, Fertman, & Ross, 1997;
Compas et al., 1996; Fleming & Offord, 1990; Nolen-Hoeksema, 1994). In
families of adolescents whose parents have cancer, families seem to ex-
pect adolescent girls to take on increased family responsibilities in
34 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
times of family crisis. This interpretation also may apply to the adoles-
cent girls in our study. Thus, future studies need to examine what fac-
tors may be related to depressive symptoms in adolescent girls in the
face of pediatric cancer.
Our findings also support the importance of obtaining reports from
more than one informant on outcome measures (La Greca & Lemanek,
1996). Children or adolescents may choose not to express their thoughts,
worries, and feelings openly with others outside their circle of trust.
This type of underreporting has been documented with survivors of pe-
diatric cancer (Phipps & Srivastava, 1997). Siblings in our study may
have underreported their symptoms of anxiety and depression during
the preintervention assessments before they had the opportunity to de-
velop trusting relationships within the group. As well, parents may not
have been aware of the extent of the emotional and behavioral problems
that their healthy children were experiencing because of their intense in-
volvement with the ill child. If this was the case, the measure of change
after the group intervention may represent an underestimation of the in-
tervention’s effect.
It is evident in this study that most siblings of children with cancer are
not at risk for major behavioral or emotional difficulties. Clearly, many
siblings demonstrate resilience in the face of adversity, perhaps because
of the protective role of family resources and environmental circum-
stances, because of their own personal characteristics, or a combination
of both. We are currently investigating protective and risk factors that
may contribute to siblings’ resilience to psychological stressors associ-
ated with the experience of pediatric cancer in the family or that may be
associated with increased psychological difficulties among siblings.
Limitations of the Study
Despite its strengths, the study had several limitations. One limitation
was the lack of a control group. A number of clinically relevant dif-
ficulties conducting this research, such as parental priorities, sche-
duling, and forming cohesive groups of siblings, led to an alternative
“time-series” within-subject, repeated measures (baseline to postinter-
vention) design. This design may be more useful in clinical research.
A second limitation was the small sample size at the first pre-
intervention assessment and at the follow-up assessment because of the
logistical problems described in Method. Parents often cited transporta-
tion and child care for the ill child and other siblings as obstacles to
maintaining siblings in a study that required commitment for repeated
Barrera, Chung, and Fleming 35
Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
assessments and numerous visits to the centre. This situation is sup-
ported by the difference in socioeconomic status between families that
completed the follow-up assessment and families that did not, suggest-
ing that limited resources were a factor in attrition at the follow-up as-
sessment. Although a multicenter collaborative study would overcome
the problem of sample size, such a study often proves to be overly costly
and logistically difficult. Differences in barriers to implementing the
group intervention program across sites may result in an aggregation of
data that cannot be interpreted, though some of these barriers may be
overcome by having an intervention guided by a manual.
CONCLUSION
Despite its obstacles and limitations, the study provides the most sub-
stantial evidence to date of the clinical significance of group interven-
tion for siblings of children with cancer and some evidence of its
effectiveness. The study has several methodological improvements
over previous intervention studies that strengthen the validity of its
findings. First, the study included strategies to control for, with a small
sample, the major threat to validity for a pre-post design–the effect of
passage of time (Campbell & Stanley, 1972). Second, the program was
based on a manual that provided specific conceptual and practical direc-
tions for the intervention. Third, the effect of the intervention was as-
sessed using standardized, objective measures and subjective reports
completed by siblings and parents. Fourth, the follow-up assessment,
although limited by sample size, provided some evidence of the consis-
tency of the intervention’s effect. Finally, the data on depression and
anxiety identified age and gender as crucial factors influencing the ef-
fect of the intervention and supported previous suggestions that adoles-
cent girls seem to be at the highest risk for depression when confronting
a life-threatening illness in the family. These findings have clear impli-
cations for family intervention efforts and provide several new direc-
tions for research in this field.
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Received: August 15, 2002
Revised: July 1, 2003
Accepted: September 1, 2003
Barrera, Chung, and Fleming 39
Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015

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Cancer sibling

  • 1. This article was downloaded by: [b-on: Biblioteca do conhecimento online UP] On: 02 June 2015, At: 09:28 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK Journal of Psychosocial Oncology Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wjpo20 A Group Intervention for Siblings of Pediatric Cancer Patients Maru Barrera PhD a a , Joanna Y. Y. Chung PhD b & Carly F. Fleming MEd c a Department of Psychology and Hematology/ Oncology Program , Hospital for Sick Children , 555 University Avenue, Toronto, Ontario, M5G 1X8, Canada b Department of Psychology , British Columbia's Children's Hospital , Vancouver, British Columbia c Hematology/Oncology Program , The Hospital for Sick Children , Toronto Published online: 25 Sep 2008. To cite this article: Maru Barrera PhD , Joanna Y. Y. Chung PhD & Carly F. Fleming MEd (2005) A Group Intervention for Siblings of Pediatric Cancer Patients, Journal of Psychosocial Oncology, 22:2, 21-39, DOI: 10.1300/J077v22n02_02 To link to this article: http://dx.doi.org/10.1300/J077v22n02_02 PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and
  • 2. are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 3. A Group Intervention for Siblings of Pediatric Cancer Patients Maru Barrera, PhD Joanna Y. Y. Chung, PhD Carly F. Fleming, MEd ABSTRACT. A group intervention to reduce emotional and behavioral problems in siblings of children with cancer was evaluated. Forty-seven siblings aged 6 to 14 years participated in seven groups, with 4 to 9 sib- lings in each group. Groups consisted of eight weekly two-hour sessions guided by a manual. Four assessments were conducted: two before the intervention and two after the intervention. Children completed self-re- port measures of anxiety, depression, and behavior; parents reported on siblings’ anxiety and behavior. After the intervention, siblings reported Dr. Barrera is a Registered Psychologist and an Associate Scientist, Department of Psychology and Hematology/Oncology Program, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8, Canada (E-mail: maru.barrera@ sickkids.ca). Dr. Chung is a Registered Psychologist, Department of Psychology, Brit- ish Columbia’s Children’s Hospital, Vancouver, British Columbia. Ms. Fleming is Program Coordinator, Hematology/Oncology Program, The Hospital for Sick Chil- dren, Toronto. The authors wish to express their gratitude to the following: the families and chil- dren who participated in the Siblings Coping Together (SCT) program; Drs. Norma D’Agostino, Karen Sumbler, Alisa Kenny, Brian Feldman, and Sunita Vohra for their comments on an early version of the manuscript; Dr. Mohamed Abdolell for his statis- tical advice; and Dr. Charmaine Miranda, Joanne Bonanno, and Danielle Kuczynski for their assistance in running SCT groups. The authors also wish to thank Families of Children with Cancer for funding part of the project and the National Cancer Institute of Canada and Candlelighters Canada for supporting Dr. Chung’s studentship. Journal of Psychosocial Oncology, Vol. 22(2) 2004 http://www.haworthpress.com/web/JPO  2004 by The Haworth Press, Inc. All rights reserved. Digital Object Identifier: 10.1300/J077v22n02_02 21 Please note that this electronic prepublication galley may contain typographical errors and may be missing artwork, such as charts, photographs, etc. Pagination in this version will differ from the published version. Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 4. significantly reduced symptoms of anxiety and depression, and parents reported significant reductions in siblings’ anxiety and behavior prob- lems. An interaction between intervention, age, and gender indicated that adolescent girls had more depressive symptoms than adolescent boys did before the intervention and younger girls did after the interven- tion. The findings suggest that group intervention benefits siblings of children with cancer, with age and gender influencing this effect. [Arti- cle copies available for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: <docdelivery@haworthpress.com> Website: <http://www.HaworthPress.com>  2004 by The Haworth Press, Inc. All rights reserved.] KEYWORDS. Siblings, pediatric cancer, group intervention, psycho- logical functioning Families of children with cancer must adjust to the implications of the diagnosis and the challenges presented by medical treatment. Changes in daily life after a diagnosis of pediatric cancer may result in chronic dis- tress for family members, including siblings, whose well-being is often overlooked. This study focuses on a group intervention program de- signed to prevent or reduce psychological difficulties in siblings of chil- dren with cancer. REVIEW OF THE LITERATURE Psychological Adjustment of Siblings The diagnosis and treatment of pediatric cancer have been associated with behavior problems, such as sleeping problems and acting out, and increased maturation in healthy siblings (Barbarin et al., 1995; Chesler, Allswede, & Barbarin, 1992; Havermans & Eiser, 1994; Heffernan & Zanelli, 1997; Murray, 1999; Sloper & While, 1996). In a large collabo- rative study, Sahler et al. (1994) estimated that 63% of siblings of chil- dren with cancer experience some psychological adjustment difficulties at any one point after the diagnosis. The impact of pediatric cancer on healthy siblings is likely to depend on their developmental level (Murray, 2000). However, previous studies have been inconclusive regarding age and gender differences. Siblings aged 6 to 12 years have been reported 22 JOURNAL OF PSYCHOSOCIAL ONCOLOGY Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 5. to exhibit more maladaptive levels of anxiety and depression and more behavior problems than the ill children (Spinetta et al., 1999) or older siblings do (Sahler et al., 1994; Sargent et al., 1995). Siblings over 11 years of age may be less involved with the family and have more com- plaints about family life than do younger siblings (Madan-Swain et al., 1993). On the other hand, among firstborn or other siblings older than the patient, parents have also reported increased maturity, supportive- ness, and independence (Barbarin et al., 1995). In the general population and among the offspring of parents who have cancer, adolescent girls have a propensity for expressing more symptoms of depression than younger girls or boys do (Chubb, Fertman, & Ross, 1997; Compas et al., 1996; Fleming & Offord, 1990). Clearly, there is a need for further investigation of age and gender differences in siblings’ psychological adjustment to the cancer experience in general and in the context of intervention specifically. Psychological Interventions for Siblings To our knowledge, the only published psychological interventions for siblings of children with cancer have been in a group format (Ad- ams-Greenly et al., 1986; Barrera et al., 2002; Bedway & Hartkopf- Smith, 1996; Chung, 1999; Dolgin et al., 1997; Heiney et al., 1990; Houtzager, Grootenhuis, & Last, 2001; Sahler & Carpenter, 1989). These group interventions have varied in form from a one-day program (Bedway & Hartkopf-Smith, 1996) to a longer-term summer program (e.g., Sahler & Carpenter, 1989). Formal evaluation of these programs has been limited. Quantitative methodology using pre- and postevaluation has been used in some studies. Five-week, six-week, and eight-week group interventions (Houtzager, Grootenhuis, & Last, 2001; Dolgin et al., 1997; Barrera et al., 2002, respectively) suggested improvements in siblings’ moods, interpersonal relations, and reduction of self-reported symptoms of anxiety. In Dolgin et al.’s study (1997), data were reported from a one-time implementation of the group program, and no efforts were made to control for factors that may have confounded the effects of the intervention. In Barrera et al.’s study (2002), siblings’ self-reports sug- gestedreducedsymptoms of anxietyanddepressionafter thegroupinterven- tion, but the sample was too small to generalize these findings. Neither study controlled for the reliability of the pre and post comparisons. Barrera, Chung, and Fleming 23 Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 6. THE “SIBLINGS COPING TOGETHER” PROGRAM The conceptual model adapted for the Siblings Coping Together (SCT) intervention program discussed in this article has been described in detail elsewhere (see Barrera et al., 2002; Chung et al., 1999). Briefly, we used cognitive behavior theory (e.g., Kendall, 2000) to conceptual- ize the behavioral difficulties encountered by siblings of children with cancer and to develop a group intervention to address them. Siblings may develop behavioral or emotional difficulties as a response to the increased time parents spend with the ill child (during hospitalizations and outpatient clinic visits). Siblings also may develop distorted cogni- tions regarding their status in the family and may experience feelings of abandonment from or of being less valued by their parents than the ill child is, resentment toward the ill child, and guilt for being healthy. The SCT group program was designed to address siblings’ behavioral and emotional difficulties as well as their distorted views (cognitions) re- lated to their experience of pediatric cancer. The purpose of the present study was twofold: to evaluate the effects of the SCT program on siblings’ symptoms of anxiety, depression, and problem behavior and to examine the role of age and gender in siblings’ psychological adjustment to pediatric cancer within the context of group intervention. On the basis of previous empirical research, we hy- pothesized that (1) compared to baseline assessments, there would be a reduction in siblings’ symptoms of anxiety and depression and behavior problems after the intervention and (2) adolescent girls would manifest more depressive symptoms than adolescent boys and younger children of either gender would at both baseline and postintervention assess- ments. METHOD Participants Between January 1998 and May 2001, 42 siblings (17 boys and 25 girls) of children being treated for cancer in a large pediatric center par- ticipated in seven consecutive SCT intervention groups. The siblings ranged in age from 6 to 14 years (M = 9.93 years, SD = 2.38 years). Each group consisted of 4 to 9 children of similar developmental age and ap- proximately equal numbers of boys and girls to ensure group cohesion and to plan developmentally appropriate activities for each session. The 24 JOURNAL OF PSYCHOSOCIAL ONCOLOGY Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 7. criteria for inclusion were (1) having a brother or sister with cancer (on or off treatment), (2) being identified by parents as having behavioral or emotional difficulties (e.g., irritability, acting out, changes in mood) since the ill child began treatment, and (3) residing within 100 kilome- ters of the hospital. Siblings who had a developmental or neurological disorder that impeded their ability to understand and to communicate verbally in a group or whose ill brother or sister died before the program began were excluded. Thirty-five of the 42 siblings (83%) came from Caucasian families; 2 of the remaining siblings were Asian-Canadian, 1 was Afro-Canadian, and 2 were categorized as mixed Native Canadian. Most of the siblings came from families with middle-class socioeconomic backgrounds (Hollingshead, 1975): Level I (9), Level II (11), Level III (10), Level IV (6), and level unknown (6). All but 3 siblings came from a two-parent family. The majority of siblings (26) were older than the ill child, and 36 of the ill children were on active treatment. The majority of patients (22) had been diagnosed with leukemia; the remaining diagnoses were sar- coma (6), brain tumor (5), lymphoma (4), neuroblastoma (2), Wilm’s tumor (2), and Other (1). Design and Procedure The study was approved by the Institutional Ethics Review Board. Although a randomized controlled trial is considered to be the gold stan- dard for assessing the efficacy of medical and psychological interven- tions (Chambless & Hollon, 1998), such a study design is not always feasible or optimal (Kazak et al., 1994). This is especially true when the focus of the research involves a population, such as siblings of children with cancer whose families are overburdened with the care of the ill child and care of the healthy siblings is often delegated to friends and relatives (Barrera et al., 2002; Spinetta et al., 1999). Thus, we used the “time-series” design for the study. The design included two baseline as- sessments (Pre 1 and Pre 2) to control for a major threat to validity, the passage of time (Campbell & Stanley, 1972); eight group intervention sessions; and two postintervention assessments, one immediately after the last intervention session (Post 1) and a follow-up assessment 6 to 12 months later (Post 2). The two postintervention assessments tested the consistency of the intervention effect. The six-month range of the Post 2 assessment period was the result of the varying availability of partici- pants for completion of the instruments. Barrera, Chung, and Fleming 25 Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 8. Siblings were referred either by staff in the hematology/oncology program after a parent expressed concerns about the sibling’s mood or behavior or by a parent who contacted the program coordinator after reading about the SCT group program (a newsletter or flyers for parents were posted in the treatment unit). One parent of each potential partici- pant was interviewed by telephone to screen for inclusion criteria and to obtain demographic information. Siblings also were interviewed by phone, after parents provided verbal consent, to screen for their commu- nication skills and willingness to participate. During the initial assessment, siblings and parents read or were read (if under Grade 3 reading level in the case of siblings) the consent or assent forms and completed the assessment. The same parent was asked to complete the parent forms at each assessment. Seven siblings completed the Pre 1 assessment and 42 siblings (including the initial 7) completed the Pre 2 assessment. The difference in the response rate between the two assessments speaks to the greatest challenge in con- ducting clinical research with this population. First, we needed to en- sure that the siblings had two preintervention assessments eight weeks apart. Given the demands of caring for the ill child, many parents found it difficult to come to the centre eight weeks before the sched- uled start of the group. Second, we needed enough siblings to run a group and to schedule a starting date. Unfortunately, some siblings were referred too close to the groups’ starting date, preventing us from obtaining a Pre 1 assessment. The Pre 1 and Pre 2 groups of siblings were compared with respect to the ill child’s age, gender, socioeco- nomic, and disease characteristics (on or off treatment) using either a t-test or chi-square analysis. The groups did not differ significantly on demographic or disease characteristics. Forty siblings completed the Post 1 assessment, but only 14 com- pleted the Post 2 assessment despite our efforts to encourage families to do so. The siblings who did and those who did not complete the Post 2 assessment did not differ significantly in gender and age; however, they did differ significantly with respect to socioeconomic status (χ2 = 9.0, p < .05). The children who did not complete the Post 2 assessment came from families with lower socioeconomic status. It is possible that those families felt more overwhelmed with daily life, as families with lower socioeconomic status often do. The following reasons were given for not completing the SCT program or parts of the assessment protocol: changes in the ill child’s health status, loss of interest in the study, feel- ings of wanting to get family life “back to normal,” and conflict be- tween adolescents and parents. 26 JOURNAL OF PSYCHOSOCIAL ONCOLOGY Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 9. Measures Instruments completed by siblings. All siblings completed the Child Depression Inventory (CDI), the self-report State-Trait Anxiety Inven- tory for Children (STAIC), and the Sibling Group Satisfaction (SGS) questionnaire. Siblings aged 11 years and older also completed the Youth Self-Report (YSR), a measure of behavior problems. The CDI is a 27-item, self-report, symptom-oriented depression scale (Kovacs, 1992). It has an acceptable test-retest reliability coefficient of .83 at three weeks and a coefficient of .41 to .69 at one year and has ade- quate validity (Kovacs, 1992). The total T-score was used for analysis. The alpha coefficient obtained in our study was .68. The 20-item State Anxiety subscale of the STAIC (Spielberger, 1983) was used in the study. Adequate reliability and validity were ob- tained in Spielberger’s normative sample: .82 for boys and .87 for girls. In our study, the alpha coefficient obtained was .65. The SGS was constructed by our research team and has been de- scribed in more detail elsewhere (Barrera et al., 2002). The version completed by siblings consisted of seven questions: for example, “How useful was the group in reducing your fears/worries about your brother/ sister’s cancer?” Respondents chose the answer that applied best to each question on a scale ranging from 1 (Not helpful/useful) to 5 (Help- ful/useful). The YSR consists of 112 items that assess competencies, total prob- lems and internalizing and externalizing behaviors (Achenbach, 1991b). For the present study, the alpha coefficient was .85. Instruments completed by parents. Parents completed the STAIC adapted for parents, the version of the SGS for parents, and the Child Behavior Checklist (CBCL) and provided demographic information about the family and medical information about the ill child. Thirty-four (81%) of the participating parents were mothers and 8 were fathers. The STAIC-Parent Form was adapted from Spielberger (1983) by our research group to be identical in form and content to the STAIC. The scores on the State Anxiety subscale were used for analysis. The al- pha coefficient for the present study was .68. The version of the SGS adapted for parents consisted of six ques- tions: For example, “How useful was the group in improving your child’s behavior?” The parents also selected answers ranging from 1 to 5. Barrera, Chung, and Fleming 27 Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 10. The CBCL is a 113-item instrument used to assess children’s compe- tencies, total problems, and internalizing and externalizing behaviors (Achenbach, 1991a). Test-retest reliability and validity for all scores are adequate (.89 and .90 at one week) for the total behavior problem scales. In the present study, the alpha coefficient was .78. The Intervention Program The SCT program consisted of eight weekly sessions of two hours each, conducted in a large room in a hospital setting. Eight sessions were planned based on our pilot work (Barrera et al., 2002). Groups were facilitated by two therapists (psychology graduate students and re- search assistants) under the supervision of a registered psychologist. In accordance with guidelines of the American Psychological Association (Chambless & Hollon, 1998), a detailed manual was written to address siblings’ thoughts and feelings and to develop coping strategies based on the participants’ developmental level and specific needs (Barrera et al., 2002; Chung et al., 1999). The manual describes the conceptual framework, intervention approaches, and activities for each session. Al- though each session had predetermined themes and goals, new issues based on recent experiences in participants’ daily lives were integrated into the program. The themes of Session 1 were development of group rapport and rules (e.g., respect each other, be on time) and introduction of partici- pants and their families. Medical information related to cancer and its treatment was the theme of Session 2. A nurse attended this session to talk with siblings for 30 minutes about cancer cells, diagnoses, and treatments, using age-appropriate and hands-on visual aids. Siblings prepared questions before the nurse’s visit and were encouraged to han- dle equipment, such as a central line and syringes. Sessions 3 to 6 each had a specific psychosocial focus: the family context (e.g., how cancer has affected each member of the family, changes that have occurred since the ill child’s treatment began), sib- lings’ feelings (e.g., resentment when parents spend too much time with the ill child, sadness when the parents and the ill child are in the hospital and the sibling is staying with relatives), relationships between siblings (e.g., not spending enough time together because of the demands of treatment, jealousy related to differential treatment), and the school context (e.g., problems with peers, difficulty paying attention when thinking about the ill child). 28 JOURNAL OF PSYCHOSOCIAL ONCOLOGY Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 11. Session 7 focused on the generation of hope for each sibling’s own fu- ture and on generalization of coping and problem-solving strategies lear- ned in the group. Session 8 was a wrap-up and “graduation.” Children re- ceived a certificate of participation at a brief ceremonyattendedbyparents. Each session began with an “ice-breaker” activity, such as playing a cooperative story-building game, followed by an activity to set the scene for the main theme (e.g., a list of words associated with cancer). A review of homework followed, either as a review of the information covered in the previous session (finishing a picture of a favorite activity with peers) or as preparation for the session’s main activity. Finally, the group participated in activities specifically designed to address the ses- sion’s theme. For example, in Session 4, participants made a “feeling tree” based on feelings that were generated through group discussion. The subsequent activity involved role-playing strategies to make them- selves feel better when feeling sad or angry (more details are included in the SCT manual; Chung et al., 1999). Data Analysis To assess the test-retest reliability of the baseline data, we conducted both paired t-tests and correlations. For the main analysis of intervention effects, we conducted separate repeated measures ANOVAs for each out- come measure, using time (from Pre 2 to Post 1), age (younger: 6 to 10 years, older: 11 to 14 years), and gender. To assess the consistency of the postintervention effects, t-tests and correlations for each measure were conducted using the subsample of 14 participants who completed both the Post 1 and Post 2 assessments. As Drotar (2002) suggested, we have reported effect sizes and significance levels in Results. RESULTS Preliminary Analysis The following correlations using the subsample of participants (7 siblings and 7 parents) who completed the two baseline assessments were found to be significant: parents’ reports of siblings’ anxiety and behavior problems (r = .934, p < .01, and r = .667, p < .05, respectively) and siblings’ reports of anxiety (r = .520, p < .05). Paired t-tests yielded no significant differences on any of the measures. Thus, the correlations indicate adequate test-retest reliability for the two baseline assessments Barrera, Chung, and Fleming 29 Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 12. across two of the three measures, one of which (the STAIC) was com- pleted by both siblings and parents. Pre- and Post-Intervention Effects An ANOVA using the siblings’ self-reports of depression indicated a main effect of time suggesting a significant reduction in depressive symptoms at the end of the intervention (Pre: M = 49.85, SD = 13.71; Post: M = 45.32, SD = 8.47; F[1,33] = 8.28, p = .007, effect size = .20). Siblings’ self-reports of anxiety (Pre: M = 31.30, SD = 7.55; Post: M = 27.92, SD = 6.49; F[1,34] = 8.11, p = .007, effect size = .19) and par- ents’ reports of siblings’ anxiety (Pre: M = 34.99, SD = 7.10; Post: M = 30.62, SD = 5.35; F[1,35] = 18.80, p = .000; effect size = .35) indicated a significant reduction of siblings’ symptoms of anxiety. No significant time effect was found in the siblings’ self-reports or in the parents’ re- ports of behavior problems. Effects of Age, Gender, and the Intervention The ANOVA for the self-reports of depression scores indicated a sig- nificant three-way interaction of time, age, and gender (F[1,33] = 6.37, p = .017; effect size = .16), which is depicted in Figure 1. Analysis of this interaction using t-tests with a Bonferroni correction (p < .02) showed the following trends: • Adolescent girls had higher depression scores before the interven- tion than adolescent boys did (M = 59.78, SD = 21.08, and M = 43.50, SD = 7.00, respectively; t[17] = Ϫ2.21, p < .05). • Adolescent girls had higher depression scores after the interven- tion than younger girls did (M = 52.71, SD = 11.73, and M = 43.00, SD = 6.50, respectively; t[21] = 2.82, p < .05). • Younger boys had the greatest decrease in depression scores from pre- to postintervention (M = 53.86, SD = 13.75, and M = 42.57, SD = 7.09, respectively; t[6] = 3.00, p <. 05). The mean group scores of the adolescent girls were at the borderline clinical range before the intervention (with a large standard deviation) and returned to normative levels after the intervention. In addition, there was a significant age ϫ gender interaction (F[1,33] = 6.80, p < .05, ef- fect size = .17), which confirmed the findings of the three-way interac- tion described above. Adolescent girls tended to have higher depression 30 JOURNAL OF PSYCHOSOCIAL ONCOLOGY Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 13. scores compared with younger girls (t[22] = 2.63, p < .05) and adoles- cent boys (t[17] = Ϫ2.43, p < .05). For parents’ reports of siblings’ anxiety scores, there was a signifi- cant age ϫ gender interaction (F[1,35] = 4.18, p < .05, effect size = .10). Analysis of this interaction yielded a pattern similar to that of the sib- lings’ self-reports of depression scores: Both before and after the inter- vention, older girls tended to have higher anxiety scores than younger girls did (Pre: M = 37.00, SD = 7.41; Post: M = 32.63, SD = 6.78; and Pre: M = 33.75, SD = 5.00, Post: M = 29.07, SD = 4.01, respectively; t[22] = 1.64, p = .10). Older boys tended to have lower anxiety scores than younger boys did both before and after the intervention (Pre: M = 33.20, SD = 7.94; Post: M = 29.44, SD = 2.01; and Pre: M = 38.07, SD = 9.44; Post: M = 33.14, SD = 7.99, respectively; t[15] = Ϫ1.27, p Յ .10). Follow-Up Effects For the subsample of 14 siblings who completed the follow-up mea- sures, the mean scores from postintervention to follow-up were similar among self-reports of depression (Post 1: M = 43.07; Post 2 M = 41.93) and anxiety (Post 1: M = 26.14; Post 2: M = 26.29) as well as parents’ re- Barrera, Chung, and Fleming 31 ADOLESCENTS CHILDREN* MeanCDTTotalScore Pre-Intervention Post-Intervention Pre-Intervention Post-Intervention Older Males Older Females Younger Males Younger Females 60 55 50 45 40 FIGURE 1. Siblings’ scores on the Child Depression Inventory, by age, time, and gender. (*The clinical range of the instrument begins at T-score = 60.) Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 14. ports of sibling anxiety (Post 1: M = 31.21; Post 2: M = 30.89). All paired t-tests indicated no significant difference. Comparisons of parents’ reports of behavior problems yielded a sig- nificant reduction from postintervention to follow-up (Post 1: M = 48.71; Post 2: M = 42.86; t[13] = 2.00, p < .05). No analyses were con- ducted on siblings’ behavior scores because at follow-up only four sib- lings were old enough to complete the YSR. Correlational data indicated a similar pattern. Siblings’ self-report scores on depression and anxiety (r = .632, p < .05, and r = .612, p < .05, respectively) and parents’ scores on siblings’ anxiety (r = .544, p < .05) were consistent from postintervention to follow-up. Group Satisfaction The numbers of siblings who found the group to be “Very helpful” or “Somewhat helpful” cited the following: improving their knowledge of pediatric cancer (32), reducing their worries about pediatric cancer (30), expressing their feelings to others (27), dealing with their brother or sis- ter’s cancer (26), and getting along with other members of the family (26). Many siblings expressed sadness about the termination of the pro- gram and asked if they could enroll in the group again. The majority of parents reported reduction of the sibling’s anxiety (34) and family distress (23) and improvements in the sibling’s behav- ior (32) and expression of feelings (29). In addition, many parents wrote comments saying the sibling was less irritable, was more cooperative at home, and generally appeared to be happier. One parent wrote: “This group was very good for my child. I wish it would have lasted longer.” Another parent said: “My child told me that the group was important to him because he got to express his feelings.” DISCUSSION The present study provides some evidence regarding the benefits of a manual-guided psychological group intervention for siblings of chil- dren with cancer who were experiencing some behavioral problems, emotional difficulties, or both related to pediatric cancer in the family before the intervention. The study also illustrates the role of age and gender in the psychological adjustment of siblings before and after the intervention. In addition, it highlights the importance of including more 32 JOURNAL OF PSYCHOSOCIAL ONCOLOGY Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 15. than one informant and several measures of outcome in studies of chil- dren. These findings are discussed further below. Benefits of the Intervention The comparisons of siblings’ self-reports on depression and anxiety before and after the intervention suggests that the siblings’ psychologi- cal adjustment improved after the intervention. This finding was sup- ported by parents’ reports of siblings’ anxiety, which provided another perspective concerning the effects of the intervention. The reliability of these findings is supported by the consistency of scores on measures of anxiety and behavior before the group intervention and by the scores on depression and anxiety at the follow-up assessment as well as by sib- lings’ and parents’ subjective reports of satisfaction at the end of the in- tervention. Notwithstanding the limitations of the study, which are described below, the combined data collected provide substantial evi- dence of the intervention’s effects. Given that our sample was not selected on the basis of clinical levels of depression, anxiety, or behavior problems, it was not surprising that the intervention effect sizes were weak and that the group mean scores for the measures were within normal ranges at baseline. This renders the results conservative because there was little room for improvement, yet improvement seems to have occurred as a result of the intervention. Al- though the small effect size and the lack of a control group may make these findings inconclusive with regard to the intervention’s efficacy, they seem to have clinical significance and relevance. As Kazak et al. (1994) pointed out, in siblings of children with cancer, “it is likely that the types of differences seen are not indicative of psychopathology, but are related to more subtle aspects of adjustment and coping” (p. 75). According to Kazdin (1999), clinical significance refers to the practi- cal value and the importance of the effect of an intervention in the child’s everyday life. Kazdin suggested that, depending on the type of problems and goals of treatment, clinical significance can be measured in several ways: by small changes in symptoms that affect the individ- ual’s everyday life, by subjective judgments, and by return to normative levels. In the current study, the siblings who participated in the SCT group were referred for psychological intervention through the hema- tology/oncology program because of parental concerns about their mood and behavior. Thus, subtle improvements in the areas of parental concerns had practical value for these families. Additional evidence of clinical significance of the group intervention was provided by the sib- Barrera, Chung, and Fleming 33 Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 16. lings’ and parents’ reported reduction of symptoms of depression and anxiety at the end of intervention, by the adolescent girls’ return to nor- mative levels of depression, and by the siblings’ and parents’ subjective ratings of satisfaction and the comments they provided. The combined sources of evidence suggest that the group intervention contributed to the reduction of the burden of suffering in these families and therefore improved their overall quality of life. We suggest that the reasons for the intervention’s clinical signifi- cance were related to siblings’ increased understanding of pediatric cancer and its effects on every family member, their role and status within the family, and the acquisition of concrete strategies regarding how to cope with their situation. In addition, by enrolling the sibling in the SCT group, parents demonstrated their concern for patients’ sib- lings and made efforts to spend special time with them. As one father put it, “We look forward to having ‘triple D days’: Daddy-Daugh- ter-Days.” The present findings are consistent with a previous preliminary study of siblings’ self-reports (Barrera et al., 2002), but they expand the ear- lier findings with methodological improvements: repeated measures at baseline to test for one major threat to validity, the passage of time; a follow-up assessment; and a larger sample. The study also expanded Dolgin et al.’s previous suggestions (1997) of emotional improvements in siblings after a group intervention by using standardized measures of depression, anxiety, and behavior problems. Siblings’ age and gender appeared to be critical factors in psycholog- ical adjustment to pediatric cancer in general as well as with respect to intervention, which confirmed previous suggestions (e.g., Sahler et al., 1994). The greatest reduction in depression scores after the SCT group was in young boys, which may indicate that they are the most receptive to group intervention during this time of family stress. Adolescent girls in general reported the greatest symptoms of depression at baseline, al- though their scores were in the normal range after the intervention. Ad- olescent girls also displayed more anxiety than younger girls did, supporting the notion that symptoms of anxiety and depression tap simi- lar internalizing processes (Achenbach, 1991a). The results regarding depression are consistent with previous reports of the general population of adolescent females and of adolescent fe- males whose parents have cancer (e.g., Chubb, Fertman, & Ross, 1997; Compas et al., 1996; Fleming & Offord, 1990; Nolen-Hoeksema, 1994). In families of adolescents whose parents have cancer, families seem to ex- pect adolescent girls to take on increased family responsibilities in 34 JOURNAL OF PSYCHOSOCIAL ONCOLOGY Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 17. times of family crisis. This interpretation also may apply to the adoles- cent girls in our study. Thus, future studies need to examine what fac- tors may be related to depressive symptoms in adolescent girls in the face of pediatric cancer. Our findings also support the importance of obtaining reports from more than one informant on outcome measures (La Greca & Lemanek, 1996). Children or adolescents may choose not to express their thoughts, worries, and feelings openly with others outside their circle of trust. This type of underreporting has been documented with survivors of pe- diatric cancer (Phipps & Srivastava, 1997). Siblings in our study may have underreported their symptoms of anxiety and depression during the preintervention assessments before they had the opportunity to de- velop trusting relationships within the group. As well, parents may not have been aware of the extent of the emotional and behavioral problems that their healthy children were experiencing because of their intense in- volvement with the ill child. If this was the case, the measure of change after the group intervention may represent an underestimation of the in- tervention’s effect. It is evident in this study that most siblings of children with cancer are not at risk for major behavioral or emotional difficulties. Clearly, many siblings demonstrate resilience in the face of adversity, perhaps because of the protective role of family resources and environmental circum- stances, because of their own personal characteristics, or a combination of both. We are currently investigating protective and risk factors that may contribute to siblings’ resilience to psychological stressors associ- ated with the experience of pediatric cancer in the family or that may be associated with increased psychological difficulties among siblings. Limitations of the Study Despite its strengths, the study had several limitations. One limitation was the lack of a control group. A number of clinically relevant dif- ficulties conducting this research, such as parental priorities, sche- duling, and forming cohesive groups of siblings, led to an alternative “time-series” within-subject, repeated measures (baseline to postinter- vention) design. This design may be more useful in clinical research. A second limitation was the small sample size at the first pre- intervention assessment and at the follow-up assessment because of the logistical problems described in Method. Parents often cited transporta- tion and child care for the ill child and other siblings as obstacles to maintaining siblings in a study that required commitment for repeated Barrera, Chung, and Fleming 35 Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
  • 18. assessments and numerous visits to the centre. This situation is sup- ported by the difference in socioeconomic status between families that completed the follow-up assessment and families that did not, suggest- ing that limited resources were a factor in attrition at the follow-up as- sessment. Although a multicenter collaborative study would overcome the problem of sample size, such a study often proves to be overly costly and logistically difficult. Differences in barriers to implementing the group intervention program across sites may result in an aggregation of data that cannot be interpreted, though some of these barriers may be overcome by having an intervention guided by a manual. CONCLUSION Despite its obstacles and limitations, the study provides the most sub- stantial evidence to date of the clinical significance of group interven- tion for siblings of children with cancer and some evidence of its effectiveness. The study has several methodological improvements over previous intervention studies that strengthen the validity of its findings. First, the study included strategies to control for, with a small sample, the major threat to validity for a pre-post design–the effect of passage of time (Campbell & Stanley, 1972). Second, the program was based on a manual that provided specific conceptual and practical direc- tions for the intervention. Third, the effect of the intervention was as- sessed using standardized, objective measures and subjective reports completed by siblings and parents. Fourth, the follow-up assessment, although limited by sample size, provided some evidence of the consis- tency of the intervention’s effect. Finally, the data on depression and anxiety identified age and gender as crucial factors influencing the ef- fect of the intervention and supported previous suggestions that adoles- cent girls seem to be at the highest risk for depression when confronting a life-threatening illness in the family. These findings have clear impli- cations for family intervention efforts and provide several new direc- tions for research in this field. REFERENCES Achenbach, T. M. (1991a). Manual for the Child Behavior Checklist/4-18 and 1991 Profile. Burlington, VT: University of Vermont, Department of Psychiatry. Achenbach, T. M. (1991b). Manual for the Youth Self-Report Form and 1991 Profile. Burlington, VT: University of Vermont, Department of Psychiatry. 36 JOURNAL OF PSYCHOSOCIAL ONCOLOGY Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015
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  • 21. Spinetta, J. J., Jankovic, M., Eden, T., Green, D., Martins, A. G., Wandzura, C., Wilbur, J., & Masera, G. (1999). Guidelines for assistance to siblings of children with can- cer: Report of the SIOP working committee on psychosocial issues in pediatric on- cology. Medical and Pediatric Oncology, 33, 395-398. Received: August 15, 2002 Revised: July 1, 2003 Accepted: September 1, 2003 Barrera, Chung, and Fleming 39 Downloadedby[b-on:BibliotecadoconhecimentoonlineUP]at09:2802June2015