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Brief report: does posttraumatic stress apply to


siblings of childhood cancer survivors? Journal of
Pediatric Psychology, 28...

Article in Journal of Pediatric Psychology · July 2003


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Melissa Alderfer Anne Kazak


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Brief Report: Does Posttraumatic Stress Apply to Siblings of
Childhood Cancer Survivors?
Melissa A. Alderfer,1 PhD, Larissa E. Labay,1 PsyD, and Anne E. Kazak,1,2 PhD, ABPP
1
The Children’s Hospital of Philadelphia and 2University of Pennsylvania

Objective To investigate whether adolescent siblings of childhood cancer survivors experi-


ence posttraumatic stress (PTS). Methods Participants included 78 adolescent siblings of
adolescent cancer survivors who completed self-report measures of anxiety, PTS, and percep-
tions of the cancer experience. Results Nearly half (49%) of our sample reported mild PTS
and 32% indicated moderate to severe levels. One fourth of siblings thought their brother/sister
would die during treatment; over half found the cancer experience scary and difficult. These
perceptions were related to PTS. Siblings reported more PTS symptoms than a reference group

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of nonaffected teens but had similar levels of general anxiety. Conclusions Levels of PTS
are elevated for siblings of childhood cancer survivors. Thus, PTS may be a useful model for
understanding siblings’ long-term reactions to cancer. Future research and clinical efforts
should consider the needs of siblings of childhood cancer survivors in a family context.

Key words siblings; cancer survivors; adolescents; posttraumatic stress.

Childhood cancer in a brother or sister is one of the most Sahler et al., 1994). Others show enhanced socialization,
challenging diseases for siblings to face (Sharpe & Rossiter, taking on a role of helping the ill child and their parents
2002). During cancer treatment, a healthy sibling may (Horwitz & Kazak, 1990). Despite the variation in re-
witness the physical and emotional pain of an ill brother sponses, the challenges faced by siblings during cancer
or sister, along with the parents’ distress. Those siblings treatment may put them at risk for long-term psycholog-
who understand the life threat inherent in cancer may be ical difficulties.
disturbed by the uncertainty of the future. They may also Unfortunately, the long-term adjustment of siblings of
need to endure sudden and extended separations from children with cancer has been rarely investigated. Our re-
the ill child and their parents and negotiate changes in view of the literature found only one such study. In that in-
family members’ roles and responsibilities (Shannon, Bar- vestigation, no differences were noted between 60 siblings
barin, McManus, & Freeman, 1994b). Given the family and a comparison group on internalizing and externaliz-
disruption concomitant with diagnosis and treatment for ing problems, self-esteem, or depression (Van Dongen-
childhood cancer, it is important to understand short- and Melman, De Groot, Hahlen, & Verhulst, 1995). Though
long-term consequences of these diseases for siblings. most siblings adjust well posttreatment, general measures
Research into the short-term consequences of child- of adjustment may not capture the distinctive, traumatic
hood cancer for healthy siblings has shown that during aspects of facing a life-threatening illness in a sibling.
the treatment period, some siblings feel guilt, powerless- One model of adjustment that captures the traumatic
ness, loneliness, anxiety, depression, anger, and jealousy nature of childhood cancer is a posttraumatic stress (PTS)
(Barbarin et al., 1995; Martinson, Gilliss, Collaizzo, Free- model. This model has been applied to adolescent and
man, & Bossert, 1990). Some exhibit poor academic young adult cancer survivors and their parents. Most ado-
achievement, difficulties in social relationships, mood dis- lescent survivors display rates of PTS similar to those of
turbances, and conduct problems (Barbarin et al., 1995; nonaffected comparison children, with 14.2% scoring in

All correspondence should be sent to Melissa Alderfer at Division of Oncology, Rm. 1489 Market, The Children’s
Hospital of Philadelphia, 34th & Civic Center Boulevard, Philadelphia, Pennsylvania 19104. E-mail:
alderfer@email.chop.edu.

Journal of Pediatric Psychology, Vol.  No. , , pp. – ©  Society of Pediatric Psychology
DOI: ./jpepsy/jsg
 Alderfer, Labay, and Kazak

the moderate to severe range on the Posttraumatic Stress with no familial illness on measures of PTS and anxiety
Disorder Reaction Index (PTSD-RI; Kazak et al, 1997). collected in a previous study (Kazak et al., 1997).
However, young adult survivors are at increased risk for
posttraumatic stress disorder (PTSD), with 20.5% quali- Participants
fying for the diagnosis at some time since their cancer A total of 151 families enrolled in the randomized clinical
treatment and many more showing subclinical levels of trial; 113 siblings between the ages of 10 and 20 were
PTS (Hobbie et al., 2000). Parents of childhood cancer identified across 81 of these families and were invited to
survivors also show elevated rates of PTSD and PTS. Rates participate; 99 siblings (88%) from 78 families agreed. In
of PTSD among mothers of childhood cancer survivors families where multiple siblings participated, one data
have been found to range across studies from 6.2% to 11% packet was randomly chosen for analyses. Thus, the final
(Kazak et al., 1997; Manne, DuHamel, Gallelli, Sorgen, number in the analyses was 78.
& Redd, 1998), with 40.2% scoring in the moderate to The average age of the siblings was 14.2 years (SD =
severe range on the PTSD-RI (Kazak et al., 1997). Fathers 2.2). About half (55.6%) were older than their sibling
are investigated less frequently, but about 31.2% reach the who had survived cancer; three (3.1%) were twins of sur-
moderate to severe range on the PTSD-RI (Kazak et al., vivors. At diagnosis these siblings ranged in age from 4.9
1997). Although siblings of cancer survivors may also be months to 15.8 years (M = 7.9 yrs, SD = 3.8). Cancer di-

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exposed to traumatic aspects of the cancer experience and agnoses included solid tumors (32%), lymphomas (23%),
develop PTS, their long-term adjustment in this regard ALL (28%), and other cancers (17%). At the time of data
has not been previously investigated. collection, the families were, on average, 5.3 years post-
The purpose of this study was to explore PTS in treatment (SD = 3.3). The majority of the sample (88.0%)
siblings of childhood cancer survivors. Data on sibling was Caucasian, with 10.7% African American and 1.3%
PTS and anxiety were collected and compared to those of Hispanic. Roughly a third (30.6%) reported an annual
a reference group. Perceptions of life threat and cancer- income below $50,000, 44.4% between $50,000 and
related hardship were measured as correlates of PTS. Last, $100,000, and 23.6% above $100,000.
differences in PTS were examined according to gender The preexisting reference sample included 134 chil-
and age at diagnosis, as these variables have been found to dren drawn from hospital-based pediatric practices (Kazak
moderate adjustment (Houtzager, Grootenhuis, & Last, et al., 1997). These children had no family members with se-
1999). rious chronic medical or psychiatric conditions. The mean
age was 13.2 years (SD = 2.2), and roughly half (54.2%)
of the children were female. The majority of the sample
Method was Caucasian (61%), with 17% African American, 13%
Sample Recruitment and Procedure Hispanic, and 7% Asian. Roughly a third (37%) reported
Sibling data were collected during a preintervention home annual incomes below $50,000, 30% between $50,000
visit as part of an institutional review board–approved and $100,000, and 33% above $100,000. This group was
randomized clinical trial of an intervention to reduce similar to the sibling group in terms of gender distribution,
symptoms of PTS and improve family functioning for fam- χ2(1) = .03, p = .86, and annual income, χ2(2) = 4.95, p =
ilies of adolescent survivors of childhood cancer (Surviv- .08, but was, on average, one year younger, t(206) = 3.27,
ing Cancer Competently Intervention Program [SCCIP]; p < .005, and included a greater number of ethnic mi-
Kazak et al., 1999). Names and contact information of norities, χ2(4) = 17.17, p < .001.
childhood cancer survivors between 11 and 18 years of
age and 1 to 10 years posttreatment were gathered from Measures
our oncology tumor registry. The survivor and his or her Revised Children’s Manifest Anxiety Scale (RCMAS). The
parents and siblings were contacted by mail inviting par- RCMAS is a 37-item self-report inventory of anxiety
ticipation. Through follow-up phone calls, we ensured el- (Reynolds & Richmond, 1985). Subscales include physi-
igibility, gathered names and ages of siblings, explained ological anxiety, worry, and social anxiety. Internal con-
the study, answered questions, secured enrollment, and sistency, test-retest reliability, and construct and discrim-
scheduled data collection. Siblings giving informed consent inate validity are adequate. Among our sample of siblings,
completed self-report questionnaires including measures alpha was .84.
of anxiety, PTS, and perceptions of the cancer experience. Impact of Events Scale-Revised (IES-R). Siblings of can-
We compared our sample to a reference group of children cer survivors completed the 22-item IES-R (Weiss & Mar-
Posttraumatic Stress in Siblings 

mar, 1997). In addition to intrusive thoughts and avoid- composition, correlational analyses revealed that these
ance, this revised version assesses hyperarousal. The IES variables were not related significantly to PTS; thus, they
has high internal consistency and good test-retest relia- were not controlled in the analyses. The siblings reported
bility. In our sample, internal consistency for the IES-R more intrusion (Ms [SDs] = 7.01 [7.48] vs. 4.60 [5.99];
was also high (α = .91). t [197] = 2.50, p < .02) and avoidance symptoms on the
Posttraumatic Stress Disorder Reaction Index (PTSD-RI). IES-R (11.53 [9.96] vs. 6.80 [8.22]; t [131, df corrected for
The PTSD-RI (Pynoos, Frederick, Nader, & Arroyo, 1987) unequal variances] = 3.45, p < .001) and more PTS on the
is a 20-item self-report measure with items paralleling the PTSD-RI (20.48 [9.21] vs. 15.40 [10.18]; t [196] = 3.53,
diagnostic criteria for PTSD. Each item is rated for fre- p < .01). The groups did not differ on anxiety (47.42
quency of occurrence on a 5-point scale. Total scores are [10.21] vs. 48.78 [11.56]; t [199] = –.83, p = .41).
calculated and can be categorized into severity of post- Over a fourth (n = 20, 27%) of siblings indicated on
traumatic stress reaction based on the following scores: the ALTTIQ that they thought their brother/sister would
12 to 24 = mild reaction; 25 to 39 = moderate reaction; die during cancer treatment. Over half (n = 42, 56.8%)
above 40 = severe reaction. Internal consistency in our reported that cancer treatment was scary and hard. These
sibling sample was alpha = .74. beliefs were correlated with PTS scores (rs ranged from
Assessment of Life Threat and Treatment Intensity Ques- .32 to .41, ps < .01). A few siblings (n = 12, 16%) believed

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tionnaire (ALTTIQ). The ALTTIQ (Stuber et al., 1997) has their sibling could still die from cancer.
respondents rate agreement with two statements assessing For the sibling sample, two 2 × 2 analyses of variance
perceptions of life threat (i.e., I thought my brother/sister (ANOVAs) were calculated with gender and age at diagnosis
would die when he/she had cancer; My brother/sister (dichotomized at age 6) as independent variables and
could still die from his/her cancer) and two items assess- PTSD-RI and IES-R scores as dependent variables. Age 6
ing cancer-related hardship (i.e., My brother’s/sister’s cancer was chosen as the point of dichotomization because chil-
was scary [hard] for me) on 5-point Likert scales. Ratings dren beyond this age tend to have more advanced cognitive
of hardship items were highly correlated (r = .79, p < .001) skills and thus a clearer understanding of cancer. Despite
and so were averaged to form one score. unequal cell sizes, assumptions of homogeneity of variance
were met. Female siblings, F(1, 69), and those older than
6 at diagnosis, F(1, 69), p < .05, endorsed more PTS symp-
Results toms on the IES-R. There were no significant interactions
Nearly half (n = 37; 49.3%) of the siblings had mild post- or differences on the PTSD-RI (see Table I for means).
traumatic stress reactions and almost a third (n = 24;
32.0%) had moderate to severe reactions on the PTSD-RI.
To interpret IES-R scores, we examined correspondence Discussion
between the IES-R items and DSM-IV PTSD criteria. When Adolescent siblings of childhood cancer survivors were
an item corresponding to a criterion occurred at least found to report symptoms of posttraumatic stress. Nearly
“sometimes” in the past 7 days, we considered the criterion a third of the sample indicated moderate to severe PTS
fulfilled. When more than one IES-R item loaded onto a on the PTSD-RI. Previous data show a strong association
single criterion, endorsement of any one of the items at between scores in this range and clinical diagnosis of PTSD
least “sometimes” fulfilled the criterion. Some PTSD cri- (Pynoos et al., 1993). When we compared our group to a
teria were not represented on the IES-R; thus, the follow- reference group of nonaffected teens, striking differences
ing rates may underestimate the true level of PTS in our emerged in levels of PTS. These results offer evidence that
sample. Per IES-R responses, 38.7% (n = 29) of the siblings PTS may be a useful model for understanding the long-
reported one or more symptoms of reexperiencing, 21.3% term adjustment of siblings of cancer survivors.
(n = 16) indicated three or more symptoms of avoidance, Although these results are preliminary, it is not sur-
and 22.7% (n = 17) endorsed two or more symptoms of prising that siblings of childhood cancer survivors report
arousal, fulfilling DSM-IV PTSD symptom cluster crite- symptoms of PTS. A PTS model has been used effectively
ria. Despite these levels of PTS, the average anxiety score as a framework for conceptualizing the ongoing cancer-
was in the normal range (M = 47.42, SD = 10.21). related distress of childhood cancer survivors and their
To assess if these rates of PTS were elevated, we com- parents. Although siblings of childhood cancer survivors
pared the siblings’ data to those of a preexisting reference may not have the same level of exposure as parents, who
group. Although the groups differed on age and ethnic are at the hospital and involved in decision making, or
 Alderfer, Labay, and Kazak

Table I. Mean Values (Standard Errors) for PTS by Gender and Age at Diagnosis
Measure Male (n = 32) Female (n = 42) Row Total

PTSD-RI
6 and younger (n = 29) 19.83 (2.61) 20.41 (2.20) 20.12 (1.71)
Older than 6 (n = 45) 17.40 (2.02) 23.68 (1.81) 20.54 (1.36)
Column total 18.62 (1.65) 22.05 (1.42) 20.33 (1.09)
IES-R
6 and younger 12.46 (5.58) 21.00 (4.49) 16.73 (3.58)
Older than 6 20.15 (4.14) 31.92 (3.70) 26.04 (2.78)
Column total 16.30 (3.48) 26.46 (2.91) 21.38 (2.27)
PTSD-RI scores could range from 0 to 80; IES-R scores could range from 0 to 110.

the survivors themselves, who endure invasive cancer of general distress may not be sensitive enough to cap-
treatments, siblings still experience traumatic aspects of the ture the specific psychological consequences of facing
cancer. As described earlier, siblings are often exposed to childhood cancer that are consistent with a trauma model.

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the physical and emotional suffering of their brother or sis- Female siblings reported more PTS than male sib-
ter, some (nearly a third of our sample) think their brother lings. This finding may reflect the increased family re-
or sister will die, and many (over half of our sample) feel sponsibilities many girls encounter following diagnosis
fear. Indeed, our results showed that siblings with these of cancer, including caring for the ill child (Shannon, Bar-
perceptions were more likely to endorse symptoms of PTS. barin, McManus, & Freeman, 1994a). Such responsibili-
Although we cannot directly compare the siblings in ties may expose girls more directly to the trauma of can-
our sample to their family members on rates of PTS, it is cer. Gender differences in PTS may also be explained by
interesting to note that rates of PTS in our sample (32% higher levels of empathy in girls (Lennon & Eisenberg,
scoring in the moderate to severe range on the PTSD-RI) 1987). Siblings who are more emotionally attuned to their
seem to fall below previously reported rates for mothers brother or sister may be more vulnerable to the negative
(40%), near rates for fathers (30%), and above rates for the impact of cancer (Houtzager et al., 1999). Finally, girls
survivors themselves (14%). We speculate that our sample are frequently found to exhibit more PTS than boys, even
had this rate of PTS because, like parents, in addition to given the same level of exposure (Foa & Street, 2001).
witnessing the effects of cancer and its treatment and feel- Children who were older than 6 at diagnosis indi-
ing fear and helplessness, some siblings adopt a caregiving cated more PTS symptoms than those 6 and younger at di-
role with the survivor (Horwitz & Kazak, 1990). How- agnosis. The older children’s better memory of the event
ever, like many fathers, siblings are not as involved as and greater understanding of the realities of cancer may
most mothers in hospital-based caregiving. Additionally, contribute to their higher levels of symptoms. Older chil-
the rates of PTS in siblings may exceed that of survivors be- dren may also be more involved in family discussions
cause, unlike most survivors, most siblings are distanced about cancer (Shannon et al., 1994a), which may increase
from their most common source of social support: their their level of stress, by increasing their level of exposure.
parent(s). Shifts in family role responsibilities, possible There are limitations of this study. First, the siblings
long parental absences, and the intense distress of par- were drawn from an intervention study. Families with
ents may interfere with successful adaptation of siblings to more symptoms may have been more likely to participate,
this severe stressor. contributing to a possible overestimation of PTS. Addi-
Despite these clinically significant levels of PTS, we tionally, while the reference group provided some useful
found no elevations in general anxiety, and anxiety scores comparative data, there were demographic differences be-
did not differ between siblings and our reference group tween the groups. Although the discrepant variables, age
of nonaffected teens. There were significant correlations be- and ethnicity, were not related to PTS, other, unmeasured
tween anxiety scores and some measures of PTS (PTSD-RI: differences may exist between the groups that may relate
r = .39, p < .001; IES arousal subscale: r = .28, p < .02), but to PTS. Finally, this study relied heavily upon self-report
these correlations were modest at best and, despite ele- questionnaires. The use of structured clinical interviews,
vations of PTS, did not result in elevations of anxiety the gold standard for assessing PTS, is warranted in fu-
across our sample. These findings contribute to our ar- ture investigations.
gument that general measures of adjustment and models This preliminary evidence of PTS symptoms in sib-
Posttraumatic Stress in Siblings 

lings of childhood cancer survivors is novel and con- cognitive-behavioral and family therapy interven-
tributes to the scant empirical literature in this area. Ad- tion for adolescent survivors of childhood cancer
ditional research is needed to further delineate subgroups and their families. Family Process, 38, 175 –191.
of siblings at greatest risk for long-term symptomatology. Lennon, R., & Eisenberg, N. (1987). Emotional displays
Given that PTS is also found in parents of survivors, it associated with preschoolers’ prosocial behavior.
may be important to examine familial patterns of adjust- Child Development, 58, 992 –1000.
ment and to develop family-based interventions to ame- Manne, S. L., DuHamel, K., Gallelli, K., Sorgen, K., &
liorate or prevent PTS symptoms. Redd, W. H. (1998). Posttraumatic stress disorder
among mothers of pediatric cancer survivors: Diag-
nosis, comorbidity, and utility of the PTSD Check-
Acknowledgments lists as a screening instrument. Journal of Pediatric
This study was supported by a grant from the National Psychology, 23, 357–366.
Cancer Institute (CA63930). The authors would like to Martinson, I. M., Gilliss, C., Collaizzo, D. C., Freeman,
thank the SCCIP research team for their extensive con- M., & Bossert, E. (1990). Impact of childhood can-
tributions to this study. cer on healthy school-age siblings. Cancer Nursing,
13, 183 –190.

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school age children. Archives of General Psychiatry,
44, 1057–1063.
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