Académique Documents
Professionnel Documents
Culture Documents
UP]
On: 02 June 2015, At: 10:55
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 a
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
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
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.
21
22
23
24
25
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 kilometers 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 sarcoma (6), brain tumor (5), lymphoma (4), neuroblastoma (2), Wilms
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 standard for assessing the efficacy of medical and psychological interventions (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 assessments (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 participants for completion of the instruments.
26
27
Measures
Instruments completed by siblings. All siblings completed the Child
Depression Inventory (CDI), the self-report State-Trait Anxiety Inventory 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 adequate 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 obtained in Spielbergers 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 described 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/
sisters cancer? Respondents chose the answer that applied best to each
question on a scale ranging from 1 (Not helpful/useful) to 5 (Helpful/useful).
The YSR consists of 112 items that assess competencies, total problems 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 alpha coefficient for the present study was .68.
The version of the SGS adapted for parents consisted of six questions: For example, How useful was the group in improving your
childs behavior? The parents also selected answers ranging from 1 to 5.
28
The CBCL is a 113-item instrument used to assess childrens competencies, 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 research 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. Although 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 participants 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 nurses visit and were encouraged to handle 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 childs treatment began), siblings 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).
29
Session 7 focused on the generation of hope for each siblings own future and on generalization of coping and problem-solving strategies learned in the group. Session 8 was a wrap-up and graduation. Children received a certificate of participation at a brief ceremony attended by parents.
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 sessions main activity. Finally, the
group participated in activities specifically designed to address the sessions 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 themselves 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 outcome 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
30
across two of the three measures, one of which (the STAIC) was completed 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 parents 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 reports of behavior problems.
Effects of Age, Gender, and the Intervention
The ANOVA for the self-reports of depression scores indicated a significant 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 intervention than adolescent boys did (M = 59.78, SD = 21.08, and M =
43.50, SD = 7.00, respectively; t[17] = 2.21, p < .05).
Adolescent girls had higher depression scores after the intervention 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 gender interaction (F[1,33] = 6.80, p < .05, effect size = .17), which confirmed the findings of the three-way interaction described above. Adolescent girls tended to have higher depression
31
ADOLESCENTS
CHILDREN*
55
Pre-Intervention
Pre-Intervention
Post-Intervention
Post-Intervention
50
45
40
Older Males
Older Females
Younger Males
Younger Females
scores compared with younger girls (t[22] = 2.63, p < .05) and adolescent boys (t[17] = 2.43, p < .05).
For parents reports of siblings anxiety scores, there was a significant age gender interaction (F[1,35] = 4.18, p < .05, effect size = .10).
Analysis of this interaction yielded a pattern similar to that of the siblings self-reports of depression scores: Both before and after the intervention, 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] = 1.27, p .10).
Follow-Up Effects
For the subsample of 14 siblings who completed the follow-up measures, 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-
32
33
than one informant and several measures of outcome in studies of children. 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 psychological adjustment improved after the intervention. This finding was supported 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 siblings and parents subjective reports of satisfaction at the end of the intervention. Notwithstanding the limitations of the study, which are
described below, the combined data collected provide substantial evidence of the interventions 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. Although the small effect size and the lack of a control group may make
these findings inconclusive with regard to the interventions 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 practical value and the importance of the effect of an intervention in the
childs 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 individuals 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 hematology/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-
34
35
times of family crisis. This interpretation also may apply to the adolescent girls in our study. Thus, future studies need to examine what factors 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 pediatric 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 develop 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 involvement with the ill child. If this was the case, the measure of change
after the group intervention may represent an underestimation of the interventions 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 circumstances, 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 associated 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 difficulties conducting this research, such as parental priorities, scheduling, and forming cohesive groups of siblings, led to an alternative
time-series within-subject, repeated measures (baseline to postintervention) design. This design may be more useful in clinical research.
A second limitation was the small sample size at the first preintervention assessment and at the follow-up assessment because of the
logistical problems described in Method. Parents often cited transportation and child care for the ill child and other siblings as obstacles to
maintaining siblings in a study that required commitment for repeated
36
assessments and numerous visits to the centre. This situation is supported by the difference in socioeconomic status between families that
completed the follow-up assessment and families that did not, suggesting that limited resources were a factor in attrition at the follow-up assessment. 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 substantial evidence to date of the clinical significance of group intervention 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 designthe effect of
passage of time (Campbell & Stanley, 1972). Second, the program was
based on a manual that provided specific conceptual and practical directions for the intervention. Third, the effect of the intervention was assessed 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 consistency of the interventions effect. Finally, the data on depression and
anxiety identified age and gender as crucial factors influencing the effect of the intervention and supported previous suggestions that adolescent girls seem to be at the highest risk for depression when confronting
a life-threatening illness in the family. These findings have clear implications for family intervention efforts and provide several new directions 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.
37
38
Heiney, S. P., Goon-Johnson, K., Ettinger, R. S., & Ettinger, S. (1990). The effects of
group therapy on siblings of pediatric oncology patients. Journal of Pediatric Oncology Nursing, 7, 95-100.
Hollingshead, A. B. (1975). Four factor index of social status. New Haven, CT: Yale
University.
Houtzager, B. A., Grootenhuis, M. A., & Last, B. F. (2001). Supportive groups for siblings of pediatric oncology patients: Impact on anxiety. Psycho-Oncology, 10,
315-324.
Kazak, A. E., Christakis, D., Alderfer, M., & Coiro, M. J. (1994). Young adolescent
cancer survivors and their parents: Adjustment, learning problems, and gender.
Journal of Family Psychology, 8, 74-84.
Kazdin, A. E. (1999). The meanings and measurement of clinical significance. Journal
of Consulting and Clinical Psychology, 67, 332-339.
Kendall, P. C. (2000). Child and adolescent therapy: Cognitive-behavioral procedures. New York: Guilford Press.
Kovacs, M. (1992). Manual for the Child Depression Inventory. New York, NY:
Multi-Health Systems.
La Greca, A. M., & Lemanek, K. L. (1996). Assessment as a process in pediatric psychology. Journal of Pediatric Psychology, 21, 137-151.
Madan-Swain, A., Sexson, S. B., Brown, R. T., & Ragab, A. (1993). Family adaptation
and coping among siblings of cancer patients, their brothers and sisters, and
nonclinical controls. American Journal of Family Therapy, 21, 60-70.
Murray, J. (1999). Siblings of children with cancer: A review of the literature. Journal
of Pediatric Oncology Nursing, 16, 25-34.
Murray, J. (2000). Understanding sibling adaptation to childhood cancer. Issues in
Comprehensive Pediatric Nursing, 23, 39-47.
Nolen-Hoeksema, S. (1994). An interactive model for the emergence of gender differences in depression in adolescence. Journal of Research on Adolescence, 4, 519534.
Phipps, S., & Srivastava, D. K. (1997). Repressive adaptation in children with cancer.
Health Psychology, 16, 521-528.
Sahler, O. J. Z., & Carpenter, P. J. (1989). Evaluation of a camp program for siblings of
children with cancer. American Journal of Disease in Childhood, 143, 690-696.
Sahler, O. J. Z., Roghmann, K. J., Carpenter, P. J., Mulhern, R. K., Dolgin, M. J.,
Sargent, J. R., Barbarin, O. A., Copeland, D. R., & Zeltzer, L. K. (1994). Sibling adaptation to childhood cancer collaborative study: Prevalence of sibling distress and
definition of adaptation levels. Developmental and Behavioral Pediatrics, 15,
353-357.
Sargent, J. R., Sahler, O. J. Z., Roghmann, K. J., Mulhern, R. K., Barbarin, O. A., Carpenter, P. J., Copeland, D. R., Dolgin, M. J., & Zeltzer, L. K. (1995). Sibling adaptation to childhood cancer collaborative study: Siblings perceptions of the cancer
experience. Journal of Pediatric Psychology, 20, 151-164.
Sloper, P., & While, D. (1996). Risk factors in the adjustment of siblings of children
with cancer. Journal of Child Psychology, Psychiatry and Allied Disciplines, 37,
597- 607.
Spielberger, C. D. (1983). Manual for the State-Trait Anxiety Inventory. Palo Alto,
CA: Consultant Psychologists Press.
39
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 cancer: Report of the SIOP working committee on psychosocial issues in pediatric oncology. Medical and Pediatric Oncology, 33, 395-398.