Journal of Pediatric Psychology o(I) pp.

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doi:Io.Iog/jpepsy/jsioI
Journal of Pediatric Psychology vol. o no. I Society of Pediatric Psychology zoo; all rights reserved.
Evidence-Based Interventions for Survivors of Childhood Cancer
and Their Families
Anne E. Kazak, PHD
Children s Hospital of Philadelphia and the University of Pennsylvania
Objective To summarize existing empirical reports of psychological interventions for
children with cancer and their families and to outline directions for future work. Methods
Research accomplishments related to four areas were summarized: understanding and reducing
procedural pain; realizing long-term consequences; appreciating distress at diagnosis and over
time; and knowing the importance of social relationships. Recommendations for future research
in this field were discussed in three domains: balancing competence and psychopathology;
integrating research-based interventions into clinical care; future directions). Results and
Conclusions Interventions related to procedural pain and distress have strong empirical
support. Although most survivors of childhood cancer and their families adjust quite well as
they complete treatment, evidence-based interventions during and after treatment that address
cancer-specific sequelae represent important growing areas of work. In the future, the develop-
ment of interventions to address emerging survivorship issues will be vital, and theoretically
grounded, evidence-based pragmatic interventions will be necessary.
Key words pediatric; oncology; cancer; psychological interventions.
With the general growth of evidence-based practice in
health care, it is an opportune time to address the state
of the art of psychological interventions for children
with cancer and their families. Indeed, pediatric psy-
chologists have a strong and growing presence in chil-
drens cancer treatment programs and collaborate with
other health care providers to deliver much-needed psy-
chosocial support to patients, families, and staff. This
care is an integral part of comprehensive cancer treat-
ment and is reflected in treatment recommendations by
national and international pediatric groups (American
Academy of Pediatrics, 1997; Janovic, Van Dongen-
Melman, Vasilatou-Hosmidis, Jenney, & European School
of Oncology Advisory, 1999; Noll & Kazak, 1997, 2004).
Scientifically, childhood cancer is one of the most
prominent topics in the Journal of Pediatric Psychology,
representing a substantial portion of papers that address
childhood chronic illness (Kazak, 2002a). However,
similar to research on other pediatric chronic conditions,
the majority of papers on pediatric oncology across
refereed publications report not on intervention research
but on the results of descriptive and correlational
research (Kazak, 2002a).
As scientistpractitioners in pediatric cancer, we
face a situation in which clinical care is expected and
appreciated but must be provided with relatively few
intervention studies to guide our advocacy and delivery
of care. In an effort to help resolve this dilemma, the
goals of this paper are twofold: first, to summarize the
existing empirical reports of psychological interventions
for children with cancer and their families (accomplish-
ments); second, while acknowledging challenges in this
field, to outline directions for future psychological inter-
vention research in pediatric oncology.
All correspondence should be sent to Anne E. Kazak, PhD, ABPP, Childrens Hospital of Philadelphia, 34th Street and
Civic Center Boulevard, Room 1486, CHOP North, Philadelphia, PA, 191034399. E-mail: kazak@email.chop.edu.
o Kazak
Accomplishments in Pediatric Oncology
Research Related to Psychological
Intervention
A strong foundation for psychological intervention
research in pediatric oncology has developed over the
past two to three decades. Work contributing to this
empirical foundation may be classified into four general
areas of accomplishment: understanding and reducing
procedural pain; realizing long-term consequences;
appreciating distress at diagnosis and over time; and
knowing the importance of social relationships. For each
of these areas, I present major and consistent findings and
their applicability toward intervention, as well as summar-
ies of pertinent empirical intervention research.
Understanding Procedural Pain
Applications of behavioral models and treatments to
help children undergoing invasive and painful procedures
as part of their cancer care are exemplars of research
that informs clinical practice in pediatric oncology. A
range of cognitive and behavioral approaches have been
utilized and investigated, including preparation, desen-
sitization, imagery, relaxation, modelling, distraction,
and positive reinforcement. Approaches that use a com-
bination of cognitivebehavioral approaches are among
the most commonly studied (Kazak & Kunin-Batson,
2001) and are regarded as well-established treatments
(Powers, 1999).
The procedural pain literature provides information
potentially generalizable to other types of intervention.
First, interventions in this field have developed system-
atically from well-established learning principles. Second,
procedural pain interventions have been tested in care-
fully controlled studies and have used multiple outcome
measures, such as child, parent, and staff report; obser-
vational techniques; and physiological measurements
(e.g., heart rate) or neuroendocrine measurements (e.g.,
cortisol; Chen, Joseph, & Zeltzer, 2000; Jay, Elliott,
Fitzgibbons, Woody, & Siegel, 1995). Furthermore,
child factors such as temperament have been shown to
affect intervention efficacy (Chen, Craske, Katz, Schwartz,
& Zeltzer, 2000). Third, research has shown that parents
and staff can learn and implement these interventions
(Barrera, 2000; Blount et al., 1992; Kazak, Penati, et al.,
1998). Fourth, application of these interventions has
remained flexible to accommodate change. The avail-
ability, refined delivery, and positive outcomes of phar-
macological treatments to prevent and reduce pain and
distress during procedures have made use of cognitive
behavioral treatments less common in practice. Such shifts
in treatment require flexibility in applying psychological
knowledge to pediatric problems. For example, the inte-
gration of cognitivebehavioral therapy with other inter-
vention approachesin this case, pharmacologichas
proven highly effective (Jay et al., 1991; Kazak, Penati,
et al., 1998) and can help identify new opportunities for
intervention.
Realizing Long-Term Consequences
With increasing rates of successful pediatric cancer
treatment, there has been a parallel increase in our
appreciation for the medical and psychological sequelae
of cancers and their treatments. In their review of late
effects of cancer therapy, Friedman and Meadows
(2002) highlight not only the growing body of research
on adverse consequences of treatment but also the diffi-
culties of conducting research in this area. Specifically,
they emphasize the importance of integrating research
and clinical care to identify and treat medical and psy-
chological aftereffects effectively. The threatened or actual
development of late effects from pediatric cancer therapy
provide important opportunities for psychosocial inter-
vention, particularly for subgroups of patients at high risk
for persistent difficulties.
Indeed, data from the first major cohort of childhood
cancer survivors indicate that psychological adjustment
was in general quite good. Across studies from the late
1970s through the 1990s, a minority of survivors (10%
20%) were reported to have ongoing distress; for most,
adjustment was within normal limits as measured using
standardized questionnaires (Kazak, 1994). The most
consistent finding, in terms of factors associated with
less positive adjustment, was disease and treatment that
affected the central nervous system (Kazak, 1994). How-
ever, psychological late effects, neurocognitive and
psychosocial, continue to be prevalent and concerning
(Friedman & Meadows, 2002).
Current thinking suggests that traditional or general
measures of psychopathology and well-being may not
have captured the specific and persistent experiences of
childhood cancer survivors and their families. Empirical
studies of posttraumatic stress disorder (PTSD; American
Psychiatric Association [APA], 1994) and posttraumatic
stress symptoms (PTSS) in survivors and their families
offer one alternative. The fourth edition of the Diagnostic
and Statistical Manual of the American Psychiatric Associa-
tion (DSMIV; APA, 1994) added experiencing a life-
threatening medical condition or observing it in a close
affiliate (e.g., family member) as a qualifying event for
PTSD.
With regard to PTSD in childhood cancer survivors,
rates are low (5%10%; Butler, Rizzi, & Handwerger,
Evidence-Based Interventions for Survivors of Childhood Cancer I
1996; Erickson & Steiner, 2001; Kazak, Barakat et al.,
2001); however, they are considerably higher when
assessing symptom clusters (e.g., reexperiencing, arousal;
Brown, Madan-Swain, & Lambert, 2003; Erickson &
Steiner, 2001; Kazak, Barakat et al., 2001). High rates of
PTSD and PTSS are reported for survivors of childhood
cancer when they are young adults (1521%, Hobbie
et al., 2000; Rourke, Hobbie, & Kazak, 2002). For par-
ents of childhood cancer survivors, rates of PTSD or par-
tial PTSD range from 5% to 25% (Brown et al., 2003;
Kazak, Rourke et al., 2001; Kazak et al., 2004; Manne,
DuHamel, Gallelli, Sorgen, & Redd, 1998; Manne et al.,
2002) with subclinical PTSD being common as well.
Mothers and fathers were found to have significantly
higher levels of PTSS than were parents of never-ill chil-
dren (Kazak et al., 1997). In a subsequent study, nearly
all families (99%) had at least one parent meet criteria for
Symptom Cluster B (reexperiencing), and 20% of the
sample had at least one parent with current PTSD
(Kazak, Alderfer et al., in press). Data also indicate PTSS in
siblings of survivors (Alderfer, Labay, & Kazak, 2003).
An intervention to reduce PTSS has been evaluated
in a wait-list control randomized clinical trial of 150
families. The Surviving Cancer Competently Intervention
Program (SCCIP; Kazak et al., 1999) integrates cognitive
behavioral and family therapy in a four-session, 1-day
program involving groups of adolescent cancer survivors
and their mothers, fathers, and siblings. Using this treat-
ment model, survivors and family members identify
ongoing distressing beliefs about cancer and its treat-
ment and utilize an interpersonal systems framework to
identify the current and likely future impact of cancer
on the family. The results of the randomized clinical
trial indicate that families randomized to the SCCIP arm
showed significant reductions in PTSS, particularly for
survivors and fathers (Kazak, Alderfer et al., 2004). A
two-session intervention based on the SCCIP model has
also been developed and piloted among 21 young adult
survivors (Rourke et al., 2002). Most recently, this treat-
ment model has been revised and piloted for caregivers
of children at the time of diagnosis (Kazak, Simms et al.,
in press).
Health-related problems that can develop secondary
to cancer and its treatment provide opportunities for
psychological intervention in cancer survivorship. For
example, common late effects affecting the cardiopul-
monary, endocrine, or musculoskeletal systems can each
have psychological components and thus provide targets
for treatment strategies. As an example, smoking pre-
vention is important for everyone, but childhood cancer
survivors with cardiopulmonary late effects and those
who are at risk for secondary malignancies provide a
particularly opportune group to target. In a randomized
clinical trial of a brief (< 1 hr) educational intervention
delivered by telephone, Tyc and colleagues (2003)
provided evidence that at 1 year postintervention (but
not at 6 months), adolescent survivors who received the
intervention showed increased knowledge of smoking
risks, reported more perceived vulnerability, and indi-
cated less intent to smoke cigarettes than did control
participants.
Appreciating Distress at Diagnosis and Over Time
The largest area of work in pediatric oncology has
examined the psychological reactions of patients and
parents during the course of active cancer treatment.
This work provides ample evidence of challenges faced
by children and families but has returned inconclusive
data with regard to potential intervention targets. For
example, survivors of childhood cancer do not evi-
dence elevated levels of depression (Recklitis, OLeary,
& Diller, 2003; Zebrack et al., 2002). The types of
depressive symptoms seen in pediatric cancer patients
during treatment are often indicators of an understand-
able and normal response to the distressing circum-
stances of diagnosis and treatment; they can be
understood and treated contextually (Kazak, Simms, &
Rourke, 2002; Mulhern, Fairclough, Smith, & Douglas,
1992). Parents similarly show elevations in scores on
measures of psychological distress (Hoekstra-Weebers,
Jaspers, Kamps, & Klip, 2001) but, again, not clearly of
the magnitude generally associated with help seeking or
psychotherapy.
The few prospective studies of adjustment over time
report similar findingsthat distress attenuates over
time (irrespective of intervention) and that early adap-
tive adjustment is associated with comparable adjust-
ment over time (Best, Streisand, Catania, & Kazak,
2002; Hoekstra-Weebers et al., 2001; Kazak & Barakat,
1997; Kazak, Penati, Brophy, & Himelstein, 1998; Kupst
et al., 1995; Kupst & Schulman, 1988). That distress is
high at diagnosis and naturally attentuates for most fam-
ilies poses particular challenges for interventions dur-
ing treatment. For example, in a randomized study of
an eight-session psychoeducational intervention, both
treatment and control groups improved over time
(Hoekstra-Weebers, Heuvel, Jaspers, Kamps, & Klip,
1998). This highlights the potential importance for
identifying specific targets of the intervention while
being mindful of the fact that adaptation and coping
over time will predict a natural decline in distress,
regardless of intervention.
z Kazak
The most promising interventions during cancer
treatment appear to be those that are carefully timed and
tailored to specific outcomes rather than those that rely
on general outcomes. For example, problem-solving
therapy has been shown to be more effective than treat-
ment as usual in reducing negative affectivity and in
increasing problem-solving skills for mothers of chil-
dren currently in treatment (Sahler et al., 2002). These
data have been replicated (Sahler et al., 2004) to show
that a systematic, relatively easy-to-deliver intervention
to address ways of solving problems may help mothers
cope with the many stressful demands of cancer therapy
and may provide benefits to their emotional well-being.
The data show the strongest support for short-term
treatment effects, and the authors raise the possibility
that problem solving may have an impact on other
psychological outcomes over time (Sahler et al., 2002).
In a pilot study with 22 mothers of children under-
going a bone marrow transplantation, Streisand, Rodrique,
Houck, Graham-Pole, and Berlant (2000) demonstrated
the feasibility of providing parents with stress reduction
techniques in a one-session intervention. The data com-
paring the intervention to standard preparation suggest
that the timing of intervention may be criticalin this
case, before the admission for transplantation, when
stress levels are elevated.
Finally, building on a model that conceptualizes the
diagnosis of cancer as a potentially traumatic event, a
manualized intervention has been developed for parents
and other immediate caregivers of newly diagnosed pedi-
atric oncology patients (Kazak, 2002b). Using the SCCIP
treatment model (Kazak et al., 1999), this three-session
intervention helps caregivers link their cancer-related
beliefs to their actions and emotions by identifying strat-
egies to maximize adaptation in an interpersonal, family
context. The goal of the intervention is to prevent PTSS
and enhance family adjustment over the course of treat-
ment (Kazak, Simms et al., in press).
Knowing the Importance of Social Relationships
Cancer affects families and other systems in addition to
its obvious impact on patients (Kazak, Rourke, &
Crump, 2003). This is particularly pertinent in pediatric
oncology and explicit in the studies noted that include
the family as well as the patient. Although this literature
is less focused on treatment, research related to social
relationships is critically important and relevant to inter-
vention.
The work of Noll and colleagues uses methodolog-
ically rigorous approaches to describe the peer relation-
ships of children with cancer. In general, most children
with cancer have been found to be quite resilient and
have maintained good peer relationships over the course
of treatment. Some consistent indications, however, sug-
gest that children with cancer may be perceived as being
socially withdrawn (Noll, Bukowski, Davies, Koontz, &
Kulakrni, 1993; Noll, Bukowsky, Rogosch, LeRoy, &
Kulkarni, 1990; Noll et al., 1999). Similar to other
groups of children with chronic illness, children and
adolescents at highest risk for peer difficulties are those
whose treatment affects the central nervous system or
who have obvious changes in physical appearance
(Reiter-Purtill & Noll, 2003). An intervention with
direct relevance to peer relationships is social skills
training. A social skills intervention has been compared
with a school reintegration approach, with data on the
social skills package providing some evidence for its
impact over a 9-month period, particularly for children
at risk for behavioral concerns (Varni, Katz, Colegrove,
& Dolgin, 1993). Social skills training has also been
used with children with brain tumors in a pilot format
(Barakat et al., 2003).
Similar to the research guiding family intervention,
the overall competence of children with cancer in their
peer relationships necessitates carefully crafted interven-
tions that target the most relevant subgroup of patients
and provide a careful assessment of relevant outcome.
By describing the social environment of the school and
the patients interactions with other children, this work
can inform the development and evaluation of school
reintegration programs and other intervention approaches
to help children with cancer reenter their schools and
home communities (Prevatt, Heffer, & Lowe, 2000).
Unfortunately, there are no published studies of inter-
ventions with peers or other school-based interventions
that focus on children with cancer.
More generally, the amount and quality of support
available to patients with cancer and their families form
an important area of work. Social support is seen as pro-
tective against the development of distress and psycho-
pathology and in adjustment to cancer (Helgeson &
Cohen, 1996). Empirical studies of pediatric cancer
show that parental social support is associated with
adaptive functioning outcomes and that lack of social
support for parents is related to greater risk for ongoing
difficulties (Kazak, Stuber, et al., 1998; Sloper, 2000;
Speechley & Noh, 1992).
Summary of Accomplishments
Empirically supported interventions related to procedural
pain in cancer treatment are available; they are general-
izable to other situations in which children experience
Evidence-Based Interventions for Survivors of Childhood Cancer
pain and distress; and they can be flexibly combined
with other effective intervention approaches. These
interventions represent an important component of care
for children with cancer. Studies of survivors of child-
hood cancer have supported the overall psychological
health of this population while highlighting specific,
cancer-related sequelae that can be remedied using
empirically supported interventions. The large body of
research on psychological aspects of cancer and its treat-
ment have shown the importance for the early identifi-
cation of families who may benefit from psychological
intervention. Data support the use of problem-solving
therapy with mothers and favor the development of
interventions focused on specific issues and delivered
at certain points in treatment. Although most children
with cancer adjust relatively well as they return to
school and reenter peer interactions, risk factors associ-
ated with neurocognitive difficulties and changes in
appearance point to the importance of integrating these
findings into interventions that promote adaptive func-
tioning at school.
Directions for Future Intervention Research
in Pediatric Oncology
To build on the strengths of existing research related to
interventions in pediatric oncology, we as researchers
and practitioners need to identify the next steps and
priorities for investigation. In this section, I propose
three broad directions to further define and refine evi-
dence-based psychosocial practice in pediatric oncology:
balancing competence and psychopathology; integrating
research-based interventions into practice; and future
directions.
Balancing Competence and Psychopathology
To develop effective interventions, we need to attend to
the current standards in our field for empirically sup-
ported treatments (e.g., Chambless & Hollon, 1998) and
to the modifications that have been used for pediatric
psychology interventions (Spirito, 1999). However, it is
imperative that we recognize not only the conceptual
and pragmatic needs of pediatric cancer patients and
their families but also the ways in which this population
is fundamentally different from the populations for
whom other empirically supported interventions have
been developed.
This is a broad concern that transcends attention to
particular intervention outcomes or models of interven-
tion. That is, treatment models developed to reduce
symptoms of psychopathology are not necessarily well
suited to this population. If interventions for children
with cancer (or their parents or their peers) focus exclu-
sively on change (improvement) from clinical to non-
clinical scores, they will only be appropriate for a small
subset of patients. These research designs may render
data that show weak findings with attendant difficulties
in interpretation and clinical application.
As noted, the data supporting the competence of
children with cancer and their families are strong. To
develop intervention frameworks useful for this popula-
tion, we need to move outside of deficit-oriented treat-
ment models. This is not to suggest a lack of attention to
the very real distress experienced by children and fami-
lies but rather to encourage specific interventions that
build on strengths while mitigating symptoms for the
broadest possible group of patients. Such interventions
are likely to build on competency-based models and the-
ories rather than on psychopathology. Most important,
the approaches are inherently preventative. A challenge
to research in this field is the development of creative
and thoughtful research approaches and tools to docu-
ment clinically relevant change in subclinical distress
associated with cancer and its treatment.
Integrating Research-Based Interventions
Into Practice
Despite multiple, reasonably comparable treatment rec-
ommendations for psychosocial care in pediatric cancer,
there is little, if any, evidence for consistency in practice,
even across major treatment centers. In an environment
of limited resources and financial concerns, informal
evidence suggests that the amount and variety of psy-
chosocial support provided to families has declined over
the past 10 years at many centers, if not most. This trend
is disappointing given the knowledge that has accumu-
lated regarding the benefits that children with cancer
and their families derive from psychosocial interven-
tions. It is essential that approaches deemed helpful in
research studies be evaluated for broad applicability in
clinic settings and, if effective, translated into practice.
As it is in other areas of intervention research,
translating treatments from research laboratories into
practice settings is difficult work. In many cases, the dis-
tinction between laboratory-based efficacy research and
clinic-based effectiveness studies is less clear in pediatric
psychology than it is in psychotherapy research. From
the beginning, most interventions for pediatric cancer
are developed and tested in pediatric oncology settings.
The challenge comes in ensuring that helpful treatments
are used in daily practice, which necessitates evaluating
and ensuring the cost-effectiveness and feasibility of
q Kazak
psychosocial interventions within the health care
system.
One way of meeting this objective is to look broadly
at the needs of patients and families and to match level
of intervention with level of need. The overall compe-
tence of most families facing childhood cancer indicates
that many may not need traditional or intensive inter-
vention and, furthermore, may not want it. However, a
small subset of families would clearly benefit from spe-
cific interventions. The challenge is to identify level of
need and to provide interventions that are tailored to
those needs, delivering the most intensive treatments to
those who are most distressed, without negating the
needs of all families for effective, compassionate, and
responsive psychosocial care. We have proposed a tiered
model of psychosocial need and care based on public
health frameworks, using the concepts of universal,
selected, and targeted interventions (Power, DuPaul,
Shapiro, & Kazak, 2003). Most families would receive
universal care, that is, a minimal level of psychosocial
support; those with more severe difficulties would
require targeted care. If those families at highest risk for
psychosocial distress during treatment can be identified
reliably at diagnosis and if interventions can be devel-
oped to match these levels of risk, psychosocial care
would be cost-efficient. Our initial work in this area
includes the development of a brief screening tool for
assessing psychosocial risk and for predicting the health
care utilization costs associated with treating patients
and families at different levels of risk (Kazak, Prusek,
et al., 2001; Kazak, Cant, et al., 2003).
Sometimes, however, effective targeted care for
patients may not be enough to ensure the adoption of
psychological interventions in health care settings. A
second way to promote the implementation of programs
that benefit patients is to research broad, systemic
effects that may facilitate larger scale change. For exam-
ple, the implementation of procedural pain interven-
tions in a clinical setting rests on acceptance of the
intervention model and the identification of perceived
barriers to implementation (e.g., amount of time
entailed), factors that can vary across settings and time
(Kazak et al., 1996; Kazak, Blackall, Himelstein, Brophy,
& Daller, 1995). Another example is problem-solving
therapy for mothers; this treatment has a positive impact
on the emotional distress that mothers experience. This
effect could influence their ability to solve problems or
make treatment decisions (Sahler et al., 2002), possibly
improving communication with nursing staff or decreas-
ing the number of consultations with their physicians.
Similarly, brief procedural pain interventions might be
applied systematically in clinics to a broad array of
distressing procedures, with the outcomes being not
only childfamily endpoints (e.g., pain, distress) but
also staff and systems measures (e.g., time to complete
procedure, necessary dosage of sedation or analgesia,
work satisfaction). Research addressing the broad effects
of implementing psychological interventions in pediatric
oncology settings may help identify additional benefits
(e.g., cost containment, retention of nursing staff, over-
all patient satisfaction) that may aid in ensuring their
adoption. At the same time, this form of research could
uncover systemic barriers to implementation and sug-
gest alternative strategies to facilitate acceptance of the
intervention.
Future Directions
While the psychological literature in pediatric oncology
is growing at a steady rate with evidence of increasing
attention to intervention, there are many opportunities
and a few areas of apparent neglect. The most broad
opportunities include the identification of specific sub-
sets of patients for targeted interventionsfor example,
psychological interventions applied to specific treatment
effects or based on risk factors. Many possibilities exist
within this regard, particularly as treatment-related
effects continue to be identified (Friedman & Meadows,
2002). For example, there are opportunities to further
refine interventions for neurocognitive problems and to
combine them with treatments that target related emo-
tional components of functioning; likewise, there is
growing interest in interventions that could facilitate
adjustment to long-term consequences, such as infertility
and endocrine or cardiac conditions.
Perhaps the most obvious area of neglect concerns
the subset of patients who are likely to die (or have
died) and their families. In the midst of growing data on
cancer survivorship, it is important to remember that
not all patients survive. It is surprising how little data
are available to support the observation that the occur-
rence of a relapse (first or subsequent) is an extremely
stressful time for patients and families (Hinds et al.,
1996). However, when a child dies, there are still sur-
vivorsparents, siblings, and extended family members.
For these patients, palliative care programs tend to focus
on medical care (e.g., symptom management), with
clinical attention to psychosocial and spiritual needs
referred to social workers and chaplains. In general, the
empirical literature on interventions related to end of
life and bereavement is extremely limited (Kazak &
Noll, 2004). Yet, the relatively large number of children
with cancer who die provides the opportunity to
Evidence-Based Interventions for Survivors of Childhood Cancer
develop and evaluate interventions to help children and
families face one of the most difficult circumstances
imaginable and to help identify reasonable outcomes for
their well-being when a child dies.
Most psychological research in pediatric oncology
includes either patients alone or patients and mothers,
with persistent lack of attention to fathers, siblings, and
others in the childs social ecology. Furthermore, most
psychological research in this field is based overwhelm-
ingly on Caucasian samples, providing little information
on the relevance of findings for ethnic minority families.
For example, in the Childhood Cancer Survivor Study of
over 20,000 survivors of childhood cancer (which is
generating psychosocial data as well as medical outcome
data), 2% of the sample is Black and 5% is Hispanic
(Robison et al., 2002). Looking across disease groups,
reports and consideration of ethnicity were grossly
underrepresented in papers reviewed in the Journal of
Pediatric Psychology series on empirically supported
treatments (Clay, Mordhorst, & Lehn, 2002). Although
understandable in terms of the availability of study par-
ticipants, these circumstances as a whole are of great
concern in our increasingly multicultural society with
multiple and complex family configurations.
At a minimum, the inclusion of fathers in samples
is highly feasible, although necessitates commitment
to recruitment and attention to scheduling flexibility
(Seagull, 2000). In studies that pertain to parenting and
family functioning in particular, it is concerning and
unjustifiable that fathers continue to be systematically
excluded. Recent data suggest that fathers levels of can-
cer-related distress may match those of mothers and that
fathers, too, benefit from psychological intervention
(Kazak et al., in press; Kazak et al., 2004).
The recruitment of ethnic minority participants is
complex and admittedly difficult to achieve. However,
researchers can take certain steps to address these
concerns. First, they need to document and discuss the
low rates of ethnic minority participation in this field,
aside from mentioning the rates as a study limitation in
published reports. To begin to address this concern,
researchers could clearly define components of the
problemfor example, barriers to participation in stud-
ies; institutional characteristics, such as composition of
patients attending survivorship programs; perceived
importance and acceptability of interventions by indi-
viduals of ethnic minority background; associations
between socioeconomic status and race. Once explicitly
described and circulated, strategies for attaining diverse
samples can be identified and tested. Second, research-
ers need to give consideration to the development and
evaluation of existing interventions in terms of their
cultural sensitivity and applicability to ethnic minority
participants. For example, some of the existing interven-
tions could quite readily be translated into other
languages or evaluated with regard to their acceptability
among ethnic minority participants. Third, with the goal
of providing tailored psychological support to all fami-
lies of children with cancer, it is important that
researchers consider alternate models of intervention
delivery. Given the needs of ethnic minority and lower
income families, it is especially vital to consider the use
of innovative formats and the delivery of care in the
community and in schools (Tucker, 2002).
Other questions related to intervention structure
and process require further attention. It seems inevitable
that effective interventions will need to be brief. Some of
the interventions reviewed in this paper were quite short,
being 1 hr or 1 day. Others represent a range of sessions
(from three to eight), which is more consistent with other
psychological treatments. Overall, it is recommended
that interventions build on theory and clinical knowledge
and, through processes of refinement and focus, strive to
maintain their potency while being delivered in as brief
a format as is feasible and effective.
Though important, brevity must be balanced with
theoretically and empirically grounded interventions
that are doable and that can ultimately be disseminated.
Interventions that transcend traditional disciplinary
boundaries are of particular interest, such as those that
combine treatment modalities (e.g., pharmacologic and
psychologic, cognitivebehavioral and family systems)
and those that can be delivered by health care profes-
sionals outside of mental health (e.g., physicians,
nurses, teachers). Also essential is further research on
interventions that can be delivered or augmented using
technology. For example, in pediatric cancer, data sug-
gest that participation in electronically based networks
may help to reduce distress and maintain connectedness
for patients (Battles & Wiener, 2002). Furthermore,
attention to the systemwide impact of psychological
intervention implementation needs to be explored, with
benefits to the broader system maximized (e.g., cost
containment).
Multisite studies are often advocated as essential in
accruing samples of adequate size to extract treatment
effects. Indeed, successful examples of multisite trials
present evidence of their effectiveness (e.g., Sahler et al.,
2002). However, not all types of research are necessarily
amenable to multisite trials, and there is little, if any,
discussion on the potential liabilities of these studies.
Newly developed interventions may be particularly
6 Kazak
difficult to deliver and test in multi-institutional studies
unless sufficient resources are available for training and
monitoring interventionists and are above and beyond
the usual costs of coordinating a study at several sites. A
balanced portfolio of intervention studies in pediatric
oncology might include large, multisite studies of
protocolized treatments and smaller, more intensive
investigations of innovative interventions targeting specific
groups of patients. In all cases, attention to the general-
ization of treatments and dissemination is vital.
Summary
This is an opportune time to develop psychological
interventions drawing on the relatively large literature
on psychological factors and the strong tradition of clin-
ical care provided to children with cancer by health care
teams. Over the next decade psychological interventions
matched to emerging broader issues in cancer survivor-
ship will be necessary and important to ensure and
enhance the well-being of this growing population.
Effective interventions will need to balance theoretically
and clinically grounded approaches with empirical
evidence. They will need to be deliverable in a brief
format and done so creatively to mesh with pediatric
practice and health care economics. The breadth of
psychological functioning seen in children with cancer
and their families, combined with the common extreme
stressors associated with treatment, provide opportunities
for preventative interventions and necessitate the appli-
cation of a range of treatment approaches and scientific
methods.
Received April 30, 2003; revisions received November 20,
2003; accepted June 8, 2004
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Note
1 This paper is based in part on the authors presen-
tations at the Pediatric Psycho-oncology Research Summit,
sponsored by the National Cancer Institute and the Chil-
drens Oncology Group on October 1516, 2001, in San
Antonio, Texas. I appreciate the helpful comments of Melissa
Alderfer, PhD, and Mary Rourke, PhD, on this paper.