Larry L. Mullins, Elizabeth S. Molzon, Kristina I. Suorsa, and Alayna P.

Tackett
Oklahoma State University
Ahna L. H. Pai Cincinnati Children’s Medical Health Center∗
John M. Chaney Oklahoma State University∗∗

Models of Resilience: Developing Psychosocial

Interventions for Parents of Children with Chronic
Health Conditions

Research regarding family adaption and
resilience in children with chronic health
conditions has resulted in the development of a
number of theoretical models and data-driven
psychosocial interventions in the field of pedi-
atric psychology, some of which may not be
well known in the field of family science. These
models incorporate family systems theory and
multiple resiliency factors within their frame-
work to better describe the complex process
of adaptation and subsequent adjustment out-
comes. In this article, three contemporary
resilience models within pediatric psychology
are briefly reviewed and discussed. The devel-
opment of a psychosocial intervention targeting
uncertainty management for caregivers of chil-
dren with cancer and the preliminary results
are also presented as an exemplar of how such
models may utilized to build interventions.
Finally, the implications of the authors’ findings
Clinical Training, Oklahoma State University, 116 North
Murray, Stillwater, OK 74078 (larry.mullins@okstate.edu).
∗ CincinnatiChildren’s Hospital Medical Center, 3333 Bur-
net Avenue, MLC 10006, Cincinnati, OH 45229-3039.
∗∗ Oklahoma
State University, 116 North Murray, Oklahoma
State University, Stillwater, OK 74078.
Key Words: childhood chronic illness, coping and adapta-
tion, pediatric psychology, resilience factors.
176 Family Relations 64 (February 2015): 176 – 189
DOI:10.1111/fare.12104
and future research directions involving psy-
chosocial interventions for families of children
with chronic health conditions are discussed.
Over the past three decades, researchers in
pediatric psychology, also referred to as child
health psychology, have developed new models
of adaptation and resilience that lend themselves
to the development of theoretically based and
data-driven psychosocial interventions. Notably,
the primary resiliency models in pediatric psy-
chology incorporate a strong family systems
perspective as part of their framework. The
purpose of the current paper is fourfold: (a)
to briefly overview the predominant resilience
models in pediatric psychology, each of which
integrates family systems frameworks; (b) to
present the development of a related model spe-
cific to pediatric cancer that led to the creation of
an interdisciplinary psychosocial intervention;
(c) to discuss the preliminary results of this
intervention; and (d) to discuss the implications
of these results for future research across other
pediatric chronic illness groups.
Predominant Models of Resilience in Pediatric
Psychology
Recent estimates suggest that 43% of U.S.
children (∼32 million) currently have chronic
Pediatric Psychology Resilience
health conditions that affect their lives on a daily
basis (Bethell et al., 2011), with 10% to 20%
of these children having severe impairments.
For well over four decades, attempts have been
made to study these children and their families.
The majority of that research has been directed
at understanding the various factors that lead
some children and parents to function quite well,
whereas others evidence significant adjustment
problems. A wide array of variables have been
investigated, including the role of demograph-
ics, utilitarian resources (e.g., financial status),
family functioning (e.g., family cohesion), cop-
ing styles (e.g., active vs. passive), and cognitive
appraisal mechanisms (e.g., attributional style),
among others. As a result, a number of multivari-
ate conceptual models have been developed in an
attempt to guide this research. The predominant
models are those that characterize parent and
child adjustment to chronic illness as an ongoing
transactional process, organized within a family
systems framework. Three theoretical models
have driven the majority of research, those being
Wallander and Varni’s risk-resistance model
(Wallander, Varni, Babani, Tweddle Banis, &
Wilcox, 1989), Thompson et al.’s (Thompson,
Gil, Burbach, Keith, & Kinney,1993b) trans-
actional stress and coping model, and Kazak
et al.’s (2006; Kazak, Segal-Andrews, & John-
son, 1995) social ecological model. Notably,
all have been strongly influenced by Bronfen-
brenner’s (1979) social ecology model, which
suggests that the surrounding ecological envi-
ronment significantly affects individual develop-
ment. In this model, the ecological environment
is composed of multiple interacting and encom-
passing social structures. Bronfenbrenner iden-
tified these structures as the microsystem, the
mesosystem, the exosystem, and the macrosys-
tem (see Figure 1 for an elaboration). Each of the
three models outlining parent and child adjust-
ment to chronic illness is summarized briefly.
Wallander and Varni’s Disability-Stress-Coping
Model. One of the first comprehensive models
to emerge in the pediatric psychology liter-
ature was Wallander and Varni’s (Wallander
et al., 1989) disability-stress-coping model, also
known as the risk-resistance adaptation model.
Their model suggests that child and parent
psychosocial adjustment to chronic illness are
affected by numerous biopsychosocial risk
and resistance factors. Wallander and Varni
(Wallander et al., 1989) hypothesized that an
177
increase in risk factors (e.g., poverty, lack of
social support) leads to worse psychosocial
adjustment broadly defined, whereas, in con-
trast, increases in resistance factors (e.g., family
cohesion, adaptive coping styles) lead to better
psychosocial adjustment. Risk factors that have
been identified through the literature include
disease restrictions, diminished functional abil-
ity, psychosocial stressors, lower socioeconomic
status (SES), limited social support, lower care-
giver education, and poor family functioning
(Karlson et al., 2012). Generally, resistance
factors include intrapersonal variables, socioe-
cological factors, and stress management skills.
Specifically, those factors identified through
the literature include good academic perfor-
mance, higher intellectual functioning, high
self-esteem, cohesive family environment, faith
and spirituality, positive family adaptation,
higher SES, support from extended family,
reciprocity, internal locus of control, and adap-
tive coping mechanisms (e.g., Brown, Eckman,
Baldwin, Buchanan, & Dingle, 1995; Karlson
et al., 2012; Wallander et al., 1989), among
others.
A number of studies have shown support for
Wallander and Varni’s risk-resistance adapta-
tion model. For example, in parents of children
with a chronic illness, decreased use of disen-
gagement coping was linked to better adjust-
ment as measured by psychological and social
functioning, beyond the influence of disease
risk factors and psychosocial stressors (Brown
et al., 2000). In another study, parents’ stress
related to their child’s disease was positively
correlated with child health care utilization and
disease severity (Barakat et al., 2007). Addi-
tionally, when the child’s disease severity and
functional status were controlled, stress due to
the child’s chronic illness and day-to-day prob-
lems were positively correlated with anxiety
and depression symptoms in parents (Manuel,
2001). In children, health-related locus of con-
trol and adaptive behavior were also correlated
with adjustment (Brown et al., 2000; Casey,
Brown, & Bakeman, 2000), such that children
who exhibited better health-related locus of con-
trol and more adaptive behaviors reported bet-
ter psychological adjustment as measured by
the total Problem and Competence scales from
the Child Behavior Checklist. Highlighting the
interaction between risk and resistance factors
on pediatric illness, lower family functioning as
178
FIGURE 1. Bronfenbrenner’s (1979) Social Ecology Model
Note: Reprinted from Bronfenbrenner (1979).
measured by the composite score on the Fam-
ily Environment Scale scores at baseline were
associated with greater levels of health care uti-
lization and higher disease severity scores at
1-year follow-up (Barakat et al., 2007). Notably,
the risk-resistance adaptation model has been
utilized across numerous pediatric populations,
including children with diabetes, obesity, sickle
cell disease, rheumatoid arthritis, cerebral palsy,
and spina bifida (e.g., Brown et al., 2000; Casey
et al., 2000; Wallander et al., 1989).
Although there is considerable research
supporting the disability-stress-coping model,
the wide array of specific risk and resistance
factors and the complexity of their interplay can
make this a complex and difficult model to fully
test, particularly with the small sample sizes
often encountered when attempting to conduct
pediatric research. Additionally, each child
and family obviously can manifest their own
unique set of risk and resistance factors, making
generalization of findings quite challenging.
Family Relations
Furthermore, a given variable can be concep-
tually as a risk factor and a resistance factor,
depending upon whether it is high versus low;
for example, income. In addition, this model
does not tend to incorporate larger systems into
its framework, such as schools, community, or
culture. From a clinical perspective, however,
the current literature does tend to support assess-
ing for risk and resistance factors in children and
families and working to provide support in areas
that have been identified to help with disease out-
comes (i.e., providing adaptive functioning skills
to children, providing psychological support,
or helping to identify social support systems
available in the community; Brown et al., 1995).
Thompson and Gustafson’s Transactional Stress
and Coping Model. According to Thompson
and Gustafson’s (1996) model, adjustment out-
comes are impacted by illness-specific vari-
ables (e.g., disease type, diagnosis, and illness
severity), demographic variables (e.g., socio-
economic status, gender, and age), and various
Pediatric Psychology Resilience
intrapersonal adjustment processes. Within this
model, the child’s chronic illness and its associ-
ated treatment are viewed as a potential stressor
to which the individual and family systems strive
to adapt (Thompson, et al., 1993b). Specifically,
it is proposed that illness factors (e.g., disease
type, severity), demographic factors (e.g., sex,
socioeconomic status), cognitive processes, and
social support have the potential to significantly
attenuate the stress of a chronic illness and hence
the subsequent psychosocial outcomes. Within
this model, there is a strong emphasis on the
transactions that take place between child and
parent adjustment, with reciprocal influence tak-
ing place (i.e., child adjustment influences parent
adjustment, and in turn, parent adjustment influ-
ences child adjustment).
Thompson and Gustafson’s (1996) model
has also received extensive research support.
This model has been examined across a large
number of chronic illness populations, including
pediatric cancer, diabetes, sickle cell disease,
and asthma (e.g., Colletti et al., 2008; Mullins
et al., 2004; Mullins et al., 2007; Thompson
et al., 1993a, 1993b). Across a number of these
studies, research has demonstrated that par-
ent distress as measured by elevations on a
parent-completed measure of global distress
is a highly consistent and significant predic-
tor of child adjustment (i.e., internalizing and
externalizing problems), even when controlling
for demographic and illness characteristics
(e.g., Thompson et al., 1993a, 1993b). Further,
longitudinal studies examining this model in
pediatric chronic illness found that parent- and
child-reported maladaptive adjustment (i.e.,
parent-reported elevated levels of general dis-
tress, internalizing or externalizing problems for
the child, respectively) remained consistently
related over a 10- to 12-month period (Thomp-
son et al., 1994; Thompson, Gustafson, Gil,
Kinney, & Spock, 1999).
Interestingly, the transactional stress and cop-
ing model has been expanded beyond the child
with a chronic illness to include the adjustment
of siblings of children with a chronic illness
(Gold, Treadwell, Weissman, & Vichinsky,
2008). Specifically, Gold et al. (2008) found
that better family coping, increased family
expressiveness, and better family support were
correlated with better sibling emotional and
behavioral adjustment. In contrast, increased
family conflict and increased number of hospital
179
visits by the child with a chronic illness were
correlated with poorer sibling adjustment.
Although the transactional stress and cop-
ing model (Thompson & Gustafson, 1996) is
less conceptually complex when compared
to Wallander and Varni’s (Wallander et al.,
1989) risk-resistance adaptation model, addi-
tional research is needed to fully understand
the association between potential stressors and
family adaptation. Furthermore, the simplicity
of this model may actually limit its applicability
(Hocking & Lochman, 2005). Specifically,
important factors that potentially influence
child adjustment are excluded. These include
social support, the influence of peers, the child’s
behavioral competence, and cognitive appraisal
of stress and their illness (Hocking & Lochman,
2005). Additionally, expected outcomes can
change as a function of other individual differ-
ence variables (e.g., chronic illness type and
varying ethnic and cultural backgrounds; Gold
et al., 2008; Hocking & Lochman, 2005).
Kazak et al.’s Social Ecological Model. Kazak
et al.’s (Kazak, 2006; Kazak et al., 1995) social
ecological model suggests that the many sys-
tems (i.e., child, family, social group, school,
community, and culture) in which the child and
parent reside have the potential to significantly
affect child and parent adjustment to a chronic
illness. In contrast with the majority of clinical
and research work in pediatric chronic illness,
which historically has focused on the immedi-
ate child or parent unit, the social ecological
model encourages the incorporation of a num-
ber of broader ecological systems (Kazak, 2001)
consistent with Bronfenbrenner’s (1979) orig-
inal work. This model emphasizes the impor-
tance of a constant interplay between systems
levels, including the interactive nature between
the child’s diagnosis and each ecological sys-
tem. Each ecological system includes a unique
relationship or influence from several subsys-
tems within the child and family systems, which
are continually interconnected and represent var-
ious relationships, community, school, and hos-
pital influences. Although the child remains at
the center of these subsystems, the social eco-
logical model posits that adjustment to chronic
health conditions may be more adequately cap-
tured by understanding how specific subsystems
interrelate with the child and family (Kazak &
Nachman, 1991).
180
The social ecological model encompasses
several core principles that affect the child
ecology. The first most basic level of this
model includes happenings or relationships
in which the child is the primary operational
member (Kazak, Rourke, & Navsaria, 2009).
This includes microsystems such as schools,
family (immediate and extended), and the health
care system. At the next level, referred to as
the mesosystem, interplays of interactions with
broader relationships, such as the health care
team and family – school interactions, are a par-
ticular focus (Kazak et al., 2009). At this level,
influences on treatment decisions and choices,
educational maturation, as well as perceived
level of quality of care can become targets
for treatment or support. At the second-most
exterior is the exosystem (Kazak et al., 2009).
The exosystem level includes an interworking
of parental networks (e.g., social) and parental
employment. Lastly, at the outer most level, is
the macrosystem. The macrosystem incorpo-
rates culture and subculture influences (Kazak
et al., 2009), which can play a significant role in
shaping values and beliefs.
Similar to the other two models, Kazak
et al.’s (Kazak, 2006; Kazak et al., 1995) social
ecological model also has considerable research
support. For example, in parents of children
with a chronic illness, improvements in depres-
sive symptoms (e.g., “I could not shake off
the blues”), perceived burden (e.g., “I do not
feel that the burden of caregiving is shared in
our family”), and doctor – parent relationship
(e.g., “I feel my doctor treats me with respect”)
were associated with better family functioning
(e.g., “Since your child’s diagnosis, has your
relationship with your spouse/child improved,
gotten worse or stayed the same?”; Shapiro,
Perez, & Warden, 1998). Additionally, in par-
ents of pediatric cancer survivors, symptoms
of posttraumatic stress were correlated with
the parent’s anxiety symptoms, perception of
threat to their child’s life, perception of treat-
ment intensity, and social support (Kazak et al.,
1998). When assessing various dimensions of
illness management (i.e., dietary and medication
adherence, monitoring of blood glucose levels,
and exercise participation), poorer management
was associated with variables at the child (i.e.,
internalizing and externalizing factors), fam-
ily (i.e., family relations), medical team (i.e.,
satisfaction with provider), and social group
(i.e., peer support) systems levels (Naar-King,
Family Relations
Podolski, Ellis, Frey, & Templin, 2006). In chil-
dren with spina bifida, positive family, peer, and
school experiences were negatively correlated
with depression scores (Essner & Holmbeck,
2010). Similar to the previously discussed
frameworks, this model has been supported in
studies of children with a variety of chronic
illnesses, including Type I diabetes, spina bifida,
and cancer (e.g., Essner & Holmbeck, 2010;
Naar-King et al., 2006; Shapiro et al., 1998).
Although there is an emerging consensus that
multilevel perspectives such as Kazak et al.’s
(Kazak, 2006; Kazak et al., 1995) social ecolog-
ical model are promising approaches in health
behavior research and health promotion efforts,
it is often difficult to include all levels of inter-
related constructs within a single intervention
or research investigation. The social ecological
model is a broad, overarching paradigm that cre-
ates a challenge in accurately and economically
measuring all interacting subsystems. To better
examine the utility of this model, future research
efforts will necessarily involve multisite inves-
tigations with much larger samples to include
multiple subsystems.
Commonalities across Resilience Models. Im-
portantly, the models discussed here appear
to share a relatively large number of common
features. Each of these models are framed within
Bronfrenbrenner’s (1979) ecological-systems
theory, and all argue that parent and child
adjustment are the culmination of the interplay
between numerous child and parent variables,
some of which are intrapersonal (e.g., cogni-
tive appraisals, coping strategies) and some
that are interpersonal (e.g., social support). In
addition, a number of illness parameters (e.g.,
illness severity) and demographic variables
(e.g., child age; Thompson et al., 1993b) are
also purported to exert influence on adjustment
outcomes. Furthermore, across numerous pedi-
atric chronic illnesses (e.g., juvenile rheumatoid
diseases, cancer, diabetes, sickle cell disease),
cross-sectional and longitudinal studies have
robustly demonstrated the reciprocal nature of
the parent adjustment – child adjustment rela-
tionship (e.g., Chaney et al., 1997; Mullins &
Chaney, 2001; Thompson et al., 1994a, 1994b;
Thompson et al., 1999; Wagner, et al., 2003).
Indeed, these studies consistently indicate
that one of the single best predictors of child
adjustment appears to be parent adjustment.
Utilization of these models has clearly furthered
Pediatric Psychology Resilience
our understanding of specific factors that deter-
mine positive and negative adjustment outcomes
and importantly also provide potential targets
for psychosocial intervention.
In the section to follow, we describe a model
that is specific to a single childhood illness, that
of pediatric cancer, and builds on the findings
noted earlier. The goal of establishing this model
was to guide the subsequent development of a
psychosocial intervention that could feasibly be
delivered in a clinic setting to parents of children
newly diagnosed with cancer.
Intervention Model Development in the Context
of Pediatric Cancer
Pediatric cancer has surfaced as a specific area of
interest in child health psychology research, in
large part due to increasing prevalence rates and
the growing number of youth in survivorship,
as well as the significant impact this disease has
on children and their families. In 2013 alone,
approximately 11,630 children were diagnosed
with pediatric cancer, and incidence rates con-
tinue to rise (American Cancer Society [ACS],
2013). Pediatric cancer and its treatment (e.g.,
chemotherapy, radiation, surgery) clearly place
families at risk for adjustment problems (ACS,
2013; Kazak, Boeving, Alderfer, Hwang, &
Reilly, 2005; Sahler et al., 1997). Importantly,
many of these children demonstrate resiliency,
effectively negotiating the challenges and
emotions related to their disease (e.g., Kazak,
Christakis, Alderfer, & Coiro, 1994; Kupst
et al., 1995; Mackie, Hill, Kondryn, & McNally,
2000; Patenaude & Kupst, 2005). However, a
consistent subgroup (25% – 30%) evidence
significant and persistent difficulties well into
survivorship (e.g., Friedman & Meadows, 2002;
Patenaude & Kupst, 2005; Vannatta & Ger-
hardt, 2003). Specifically, survivors have a
fourfold greater risk of posttraumatic stress dis-
order (PTSD), twice as much suicidal ideation
(Recklitis et al., 2010), and greater functional
impairment, among other social, academic,
and vocational difficulties, which continue into
adulthood.
It has also become apparent that parents of
children with cancer are at even greater risk for
poor adjustment outcomes than their children
(Kazak et al., 1994; Pai et al., 2007). A large
number of parents of children with cancer report
moderate general psychological distress levels
compared to parents of healthy children (Barakat
181
et al., 1997), and moderate-to-severe levels of
posttraumatic stress symptoms (PTSS; Kazak
et al., 2005). Indeed, the current research liter-
ature substantiates that there are multiple signif-
icant influences on the adjustment of a family
to a pediatric cancer diagnosis, and in particular,
the importance of the parental adjustment to the
disease (e.g., Dolgin et al., 2007; Mullins et al.,
2012).
Importantly, a number of cognitive appraisal
variables also appear to play a role in predict-
ing adjustment outcomes. Of key relevance here
is the construct of illness uncertainty, which has
been a central focus of our research on resiliency
for over two decades. Illness uncertainty can
be understood as “present for both acute and
chronic illnesses and has been described in the
literature as a cognitive stressor, a sense of loss
of control, and a perceptual state of doubt that
changes over time” (Wright, Afari, & Zautra,
2009, p. 133). Mishel (1990), whose pivotal
research has influenced much of the uncertainly
in illness literature, has defined illness uncer-
tainty as a cognitive experience that occurs when
the meaning of illness-related events is unclear,
and outcomes are unpredictable due to insuffi-
cient or lack of information. Mishel has argued
that illness uncertainty comprises four contribut-
ing components: (a) perceived ambiguity con-
cerning the illness, (b) complexity regarding
the nature of treatment, (c) a lack of available
information regarding the seriousness of the ill-
ness and overall prognosis, and (d) perceived
unpredictability of the illness course (Mishel &
Braden, 1988). Thus, illness uncertainty is a joint
function of the interaction between objective ill-
ness events (e.g., blood tests) and a parent or
child’s subjective appraisal of the potential out-
comes (e.g., blood cell counts are “too low”) of
the illness event.
To date, a considerable body of empirical
research supports the salient role of this con-
struct in predicting adjustment outcomes. Illness
uncertainty has been shown as a robust predictor
of overall distress and symptoms of anxiety and
depression in parents of children with chronic
illnesses, including cancer (Fuemmeler, Mullins,
& Marx, 2001; Grootenhuis & Last, 1997a,
1997b), as well as with children and adolescents
with solid organ transplants (Maikranz, Steele,
Dreyer, Stratman, & Bovaird, 2007; Steele, Ayl-
ward, Jensen, & Wu, 2009), in young adults
with asthma (Mullins, Chaney, Pace, & Hart-
man, 1997), in adolescents newly diagnosed
182
with cancer (Neville, 1998), in adolescents with
type 1 diabetes (Hoff, Mullins, Chaney, Hart-
man, & Domek, 2002), and in samples of chil-
dren with other chronic conditions (Pai et al.,
2007), among others. Given this robust relation-
ship, it stands to reason that by targeting illness
uncertainty, the impact of a chronic illness could
be attenuated.
As such, we conducted an initial pilot
to test the proposition that an uncertainty-
focused intervention could affect parent adjust-
ment to the diagnosis of type 1 diabetes in
their child, and thus a psychosocial intervention
was developed and implemented (Hoff et al.,
2005). Framed as an intervention designed
to help parents cope with the uncertainty of
their child’s illness and its treatment, parents
were taught cognitive coping skills, how to
communicate with medical personnel, and how
to build social support. An early pilot of this
intervention resulted in significant reductions in
general psychological distress for parents in the
intervention group, and notably, in their children
as well (Hoff et al., 2005).
Subsequently, we sought to further develop a
model in the context of pediatric cancer. Figure 2
illustrates the Parent Uncertainty Management
Intervention (PUMI) model (Pai & Mullins,
2013). The PUMI model incorporates aspects of
Mishel’s (1984, 1990) illness uncertainty model
and Thompson and Gustafson’s (1996) transac-
tional stress and coping model.
In this model, the diagnosis of cancer and
the associated uncertainty are conceptualized as
a major stressor to which both parents and the
child with cancer must adapt, consistent with
Thompson and Gustafson (1996; see Path 1 in
Figure 2). The diagnosis of cancer is certainly
associated with less-than-perfect survival rates,
complex treatment regimens, and side effects
that then serve to promote the development of
uncertainty. Over time, the experience of sus-
tained levels of uncertainty contributes both to
increased distress and PTSS in parents, as well
as to emotional and behavioral difficulties in
their child (Fuemmeler et al., 2001; Grootenhuis
& Last, 1997a; Hoff et al., 2005; Mishel et al.,
2002).
The model further suggests that parent adjust-
ment affects child adjustment in a transactional,
bidirectional manner (see Path 2 in Figure 2).
Given the clear, robust relationship that has
been consistently documented between parental
and child adjustment, it logically follows that
Family Relations
interventions effective in decreasing parent
distress have the potential to mitigate or pre-
vent poor adjustment and increase resilience in
children with cancer in a downstream manner
(Sanger, Copeland, & Davidson, 1991; Varni
et al., 1999). Our model follows the definition
of resilience offered by Fergus and Zimmerman
(2005), who suggested that resilience is a pro-
cess by which individuals learn to overcome
the negative effects of risk exposure (e.g., the
diagnosis of cancer and its treatment), cope
with traumatic events (e.g., invasive medical
procedures), and avoid negative trajectories of
adjustment outcomes (e.g., increased uncer-
tainty, depression, posttraumatic stress). From
our perspective, this definition is most parsimo-
nious in the context of the types of challenges
that many families of children with a chronic
health condition face.
In sum, interventions that promote effective
parental uncertainty management should result
in positive parent and child adjustment out-
comes. The results of the parent uncertainty
management intervention in the context of pedi-
atric cancer are briefly discussed in more detail
below. For a more complete overview of the pro-
tocol and published results of this intervention,
please see Mullins et al. (2012) and Fedele et al.
(2013).
Preliminary Results of the Parent Uncertainty
Management Intervention
A Clinic-Based Interdisciplinary Uncertainty
Intervention for Parents of Newly Diagnosed
Children with Cancer. Our team recently
completed a pilot randomized clinical trial of
an uncertainty management intervention for
parents of children newly diagnosed with can-
cer based on the PUMI model. The 12-week
interdisciplinary (i.e., psychology and nursing)
psychosocial intervention, similar to the pre-
vious intervention conducted with parents of
children newly diagnosed with type 1 diabetes,
included six skills-based modules addressing
the nature of uncertainty, acquisition of coping
skills, communication with the medical team,
eliciting social support, and uncertainty-focused
problem solving (see Table 1 for a summary of
each of these modules and the goals for each
session). Given the strong role that nursing
plays in providing information and social sup-
port during the early stages of cancer diagnoses,
we incorporated an interdisciplinary component
Pediatric Psychology Resilience
FIGURE 2. The Parent Uncertainty Management Intervention Model.
Note: Reprinted and adapted from Pai & Mullins (2013, NIH grant application, available from authors).
PTSS = posttraumatic stress symptoms
by including a nurse interventionist who worked
in tandem with the psychology interventionist.
Weekly sessions alternated between psychol-
ogy interventionists who provided clinic-based
delivery of module sessions and nurse interven-
tionists who followed up with phone sessions
in which they reviewed the previous module
and answered questions about medical issues.
In this manner, an interdisciplinary intervention
was delivered. Following each session, the
psychology interventionists and nurse interven-
tionists jointly discussed any salient issues or
challenges that emerged for the parents. The
intervention was delivered to parent participants
on an individual basis.
Fifty-two mothers were randomized to the
intervention group or a treatment-as-usual
group, the latter of which involved typical
psychosocial services by the treatment team,
including social work and psychology support.
The intervention was determined to be feasible
183
and acceptable, with mothers rating all
components of the intervention as “highly”
satisfactory across all modules (Eddington
et al., 2011). Participant comments indicated
that the theme of coping with uncertainty was a
key aspect of the intervention. The intervention
also revealed medium-to-large effect sizes in the
expected directions for psychological distress,
uncertainty, and PTSS (Hullmann et al., 2012).
Additionally, maternal distress scores decreased
from pre- to posttreatment. Illness uncertainty
was also found to decrease significantly across
all three time points in the intervention group,
but not the treatment-as-usual group. A scatter
plot of slopes (see Figure 3), indicated that all
mothers in the intervention group evidenced
improved symptoms (i.e., negative slope),
whereas a large number of participants in the
treatment-as-usual group evidenced actual
worsening over time (i.e., positive slope). Thus,
the intervention appears to have provided an
184 Family Relations

Table 1. Modules

Module Overview Goals of Session

1 – The Nature of
Uncertainty
2 – Communication
3 – Uncertainty and Coping
4 – Reducing Stress through
Problem Solving
5 – Social Support
6 – Consolidation of Skills
Introduction of the concept of uncertainty
and what it means for the parent and his or
her child
Discussion of effective communication skills
and how to use them
Discussion of how to effectively think and
cope with issues surrounding your child’s
illness
Discussion of some effective problem
solving strategies to help get rid of
stressful situations
Discussion of the positives and negatives of
social support and how to make use of it
effectively
Discussion and combination of all the skills
previously learned
Introduction of the interventionists and
presentation of the concept of illness
uncertainty
Reduce uncertainty by teaching
communication skills, helping parents
define their role in their child’s care, and
developing a sense of control
Teach parents to evaluate cancer-related
illness uncertainty and methods of coping
by increasing parent’s understanding of
uncertainty, defining types of coping
styles, promoting a sense of control, and
highlighting the common factors of the
parent’s emotional experience
Teach parents to cope with uncertainty
through the use of problem-solving
strategies
Reduce uncertainty by learning about social
support, helping parent’s know where to
look for social support, identifying the
important aspects of social support, and
strengthening communication skills
Summarizing skills learned to manage
uncertainty across different situations,
planning for possible future illness events,
and discussing how to manage events
using these skills

important protective or buffering function
over time, and from this perspective, thereby
promoted resilience.
Interestingly, small-to-medium effect sizes
were also observed for child internalizing
symptoms between the intervention and
treatment-as-usual groups by parent report
(Fedele et al., 2013). The results indicated that
child internalizing symptoms were mediated
by the reduction in maternal distress and the
percentage of children meeting clinical cut-offs
(as defined by the Behavioral Assessment Sys-
tem for Children – 2 [BASC-2], Reynolds &
Kamphaus, 2004) decreased from pre- to post-
treatment from 24% to 0% for those children of
mothers in the intervention group; whereas the
percentage of children meeting clinical cutoffs
remained fairly consistent from pre- to post-
treatment (36% – 29%) for those children of
mothers in the treatment-as-usual group (Fedele
et al., 2013). Collectively, our results suggest
that a parent-based intervention can have an
indirect yet potent impact on child internalizing
and externalizing problems.
Conclusions and Implications for Interventions
for Chronic Health Conditions
The results from our parent uncertainty man-
agement intervention are promising; however,
it should be noted that this multidimensional
approach to intervention creates intriguing
questions about which components are the “po-
tent” factors, specifically, the means by which
the intervention exerts its influence. Clearly,
dismantling studies that attempt to separate out
these factors are in order for the future to address
this complex question. For example, it is not
clear whether the addition of an interdisciplinary
aspect (i.e., the nurse interventionists) incremen-
tally increased the effect of the intervention, nor
do we know the relative contribution of the var-
ious cognitive-behavioral strategies. Although
speculative, we would argue the following
Pediatric Psychology Resilience
FIGURE 3. Proportion of Mothers Who Evidenced Worse Psychological Symptoms Over Time by Group (e.g.,
Treatment Versus Control).
Note: Reprinted and adapted from Mullins et al. (2012).
processes may be occurring. By framing uncer-
tainty as a stressor to which the family must
cope, and providing an array of tools (i.e., cog-
nitive coping skills, enhancing communication
with medical professionals, utilizing social sup-
port), families are then able to reorganize into a
more consistent, cohesive entity even though the
structure, function, and roles of each individual
may change as a result of the disease demands.
These tools may constitute recovery factors,
which help the families attenuate a negative tra-
jectory of adjustment (McCubbin, McCubbin,
Thompson, Han, & Allen, 1997). The use of
the framework of “uncertainty management,”
with the associated goal of managing but not
necessarily removing all uncertainty associated
with the disease, may then allow families to
more quickly move back toward homeostasis.
Our study results also suggest that resilience
models based on systems theory can be
translated into meaningful and efficacious
interventions for any number of chronic health
problems. Our results suggest that interventions
185
based on these resilience models appear to have
a direct effect on caregiver functioning as well
as an indirect effect on child psychological
functioning. Specifically, our results suggest
interventions that (a) target parents, (b) target
cognitive appraisal mechanisms previously
demonstrated to be strong predictors of adjust-
ment outcomes (e.g., illness uncertainty), and
(c) provide an interdisciplinary team to maxi-
mize negotiation of a complex medical system
and treatment regimens can be successful in
reducing distress and in maximizing resilience.
Our work also suggests that it may be fruitful
to deliver such interventions in the medical
clinic context. In this manner, families are not
required to make additional, burdensome visits
to either the medical center or a mental health
practitioner’s office for such services.
Future researchers are encouraged to develop
similar psychosocial interventions, taking care
to tailor their approach to the specific demands
and stressors of a given chronic illness. Cystic
fibrosis, for example, has some common factors
186
with other chronic health conditions (e.g., com-
plex medical regimens), but differs from other
conditions which may not necessarily result in
a shortened life span (e.g., type 1 diabetes).
Finally, researchers are encouraged to better
explore the nature of transmission of treatment
effects from parents to their child, and how that
resilience in parents is communicated to youth.
In summary, it is hoped that this article pro-
vides resiliency researchers in the broader field
of family science an overview of contempo-
rary models being utilized by the subspecialty
of child health psychology, as well as their
strengths and weaknesses. Sharing such models
will hopefully result in a “cross pollenization”
of frameworks for both fields, which unfortu-
nately may operate in isolation. In addition, the
results of our uncertainty intervention suggest
that tailoring existing models and developing
associated interventions (i.e., incorporation of
the construct of uncertainty management as
an organizing framework) has the potential to
result in more potent interventions.
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