Nursing
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Coping With Pediatric Cancer : Strategies Employed by Children and Their Parents to Manage
Cancer-Related Stressors During Treatment
Aimee K. Hildenbrand, Kathleen J. Clawson, Melissa A. Alderfer and Meghan L. Marsac
Journal of Pediatric Oncology Nursing 2011 28: 344
DOI: 10.1177/1043454211430823
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430823
nbrand et al.Journal of Pediatric Oncology Nursing
JoPOn28610.1177/1043454211430823Hilde
Abstract
Pediatric cancer patients and their families face significant physical, emotional, and psychosocial challenges. Few studies
have investigated how children manage these challenges and how parents may help in the process. This qualitative
study aimed to explore common cancer-related stressors for children and to examine child coping and parental
assistance in coping with these stressors during treatment. Fifteen children undergoing cancer treatment and their
parents participated in semistructured interviews. Four themes emerged capturing cancer-related stressors: cancer
treatment/side effects, distressing emotions, disruption in daily routines, and social challenges. Six themes emerged
regarding child coping strategies that were classified within an approach/avoidance coping framework. Approach coping
strategies included the following: cognitive restructuring, relaxation, practical strategies, seeking social support, and
emotional expression. Distraction was the only avoidant coping strategy. Parents tended to encourage approach coping
strategies (eg, cognitive restructuring, social support). Within families, few coping strategies were reported (child: M =
1.47, SD = 0.99; parent: M = 3.33, SD = 1.18), suggesting that early family-based interventions teaching coping techniques
for cancer-related stressors may be beneficial.
Keywords
pediatric cancer, cancer-related stressors, coping, parent coping assistance
Introduction
In the United States in 2010, approximately 10700 children
aged 15 years and younger were diagnosed with cancer
(American Cancer Society, 2010). Children with cancer
and their families face many multifaceted and persistent
challenges, including demanding medical regimens (Pai
et al., 2007), invasive and painful medical procedures
(Hedstrom, Haglund, Skolin, & von Essen, 2003; Klosky
et al., 2007; Kuppenheimer & Brown, 2002), aversive
treatment side effects (Bryant, 2003; Patterson, Holm, &
Gurney, 2004), disruption of daily routines and social
and family roles (Kazak, Simms, & Rourke, 2002;
Woodgate, Degner, & Yanofsky, 2003), and the threat of
death (Pai et al., 2007). Research suggests that children
with cancer often consider treatment procedures to be
more traumatic than cancer itself (Armstrong & Horn,
1995; Hedstrom et al., 2003; Ljungman, Gordh, Sorensen,
& Kreuger, 1999), underlining the need for comprehensive medical care that incorporates psychological services in addition to treating the physical disease. Given
Corresponding Author:
Meghan L. Marsac, PhD, Center for Injury Research & Prevention,
The Childrens Hospital of Philadelphia, 3535 Market, Suite 1150,
Philadelphia, PA 19104, USA
Email: marsac@email.chop.edu
345
Hildenbrand et al.
& Reilly, 2005; Patino-Fernandez et al., 2008); impaired
family functioning (Pai et al., 2007); and compromised
quality of life (Eiser, Eiser, & Stride, 2005; Landolt,
Vollrath, Niggli, Gnehm, & Sennhauser, 2006). Children
undergoing treatment for cancer also frequently report
feelings of social isolation and anxiety regarding medical procedures (Griffiths, Schweitzer, & Yates, 2011;
Patterson et al., 2004). Children who are older at time of
diagnosis, female, of lower socioeconomic status, and
characterized by specific diagnosis and treatment variables (eg, brain and bone tumors, central nervous system
therapy) are at increased risk for long-term adverse psychosocial outcomes, as are those who report lower
levels of open family communication and social support (Patenaude & Kupst, 2005; Trask et al., 2003;
Varni, Katz, Colegrove, & Dolgin, 1994). Additionally,
children who perceive higher subjective life threat and
those who experience treatment as difficult or frightening are prone to posttraumatic stress symptoms (Stuber
et al., 1997).
Research suggests that coping during treatment also
influences psychosocial outcomes for children with cancer (Cohen, 1999; Kupst, 1994; Kupst & Schulman,
1988; Trask et al., 2003). According to Skinner and
Zimmer-Gembeck (2007), childrens coping can be
defined as what children actually do (their profile of
emotional, cognitive, and behavioral responses) in dealing with specific difficulties (p. 120). In this framework,
coping is viewed in the context of the situation and its
related demands (Kupst, 1994). Although a number of
models and classifications of coping have been posited,
no model has emerged as most advantageous in examining and understanding how a child copes with cancer
(Kupst, 1994). However, Roth and Cohens (1986) classification of approach- and avoidance-oriented coping is
well validated and frequently employed (Aldridge &
Roesch, 2007) and thus was used as the framework for
this study. In this taxonomy, approach-oriented coping
involves efforts directed toward managing a stressor or
related emotions (eg, information seeking, cognitive
restructuring), whereas avoidant coping strategies
are those intended to distance an individual from a
stressor or its associated emotions (eg, distraction;
Roth & Cohen, 1986).
In addition to child coping attempts, parents may also
play a significant role in childrens adjustment to cancer
by influencing their childs appraisal of stressors and subsequent coping responses (Blount et al., 1989; Blount,
Landolf-Fritsche, Powers, & Sturges, 1991; Skinner &
Zimmer-Gembeck, 2007). In general, parents can affect
child coping via coaching (ie, direct instruction/suggestions), modeling (ie, child observes parent behavior), and
through the general family context (P. A. Miller, Kliewer,
Hepworth, & Sandler, 1994; Power, 2004). Childrens
adjustment to cancer is facilitated when parents encourage
Method
Participants
Participants included 15 childcaregiver dyads. Children
(8 males) were 6 to 12 years of age (mean = 8.8, standard
deviation [SD] = 1.7); two thirds (n = 10) were Caucasian,
with the remainder of the sample self-identifying as
African American (20%; n = 3), American Indian/
Alaskan Native (6.7%; n = 1), and Hispanic (6.7%; n =
1). Children were currently undergoing treatment for
various cancers, including leukemia (26.7%; n = 4), brain
tumors (26.7%; n = 4), lymphoma (20%; n = 3), neuroblastoma (13.3%; n = 2), and sarcomas (13.3%; n = 2).
Time since diagnosis ranged from 1 week to 3.5 years
(mean = 49 weeks, SD = 53.8). Caregivers were aged 27
to 53 years (mean = 39.9, SD = 8.20) and included 11
mothers (73.3%), 1 grandmother (6.7%), and 3 fathers
(20%). All caregivers were considered primary caretakers of the participating child and are referred to as parents hereafter. Parental education level ranged from
completion of a high school degree or less (33.4%; n = 5)
to full/partial completion of a college degree (46.7%; n =
7) or graduate/professional degree (13.3%; n = 2). This
sample represented a broad range in socioeconomic status: 13.3%(n = 2) reported a household income of less
than $15000; 26.7% (n = 4) $15000 to $49999; 26.7%
(n = 4) $50000 to $99999; and 26.7% (n = 4) $100000
or more.
346
Procedure
Participants were recruited from a large pediatric cancer
center in the northeastern region of the United States.
Children were eligible to participate if they were aged 6
to 12 years, diagnosed with cancer and currently undergoing treatment, cognitively capable of assenting and completing the interview, and if 1 parent provided consent and
agreed to participate. Potential participants were screened
for eligibility and approached by a member of the research
team during an inpatient hospitalization or visit to an outpatient clinic to assess their interest in study participation.
Of the 20 families approached, 75% (n = 15) chose to
participate. Reasons for nonparticipation included lack of
interest and feeling overwhelmed or distressed. Children
and parents independently participated in semistructured
interviews conducted by trained research assistants.
Interviews were audio-recorded, transcribed, and coded
using theory (Roth & Cohen, 1986; Skinner & ZimmerGembeck, 2007) and data-based hierarchical coding
schemes (Patton, 2002). This study was approved by the
hospitals Institutional Review Board.
Coding and data analysis. Coding criteria were developed through an iterative process that combined both
empirically based a priori hypotheses (ie, empirical
research regarding types of common cancer-related
stressors and approach/avoidant coping classifications)
and novel themes that emerged from the data (Hruschka
et al., 2004; Patton, 2002). Two research assistants independently coded each transcript for the presence of child
Results
Children and parents within this sample reported a wide
variety of child cancer-related stressors, which were categorized into 4 general themes: cancer treatment and side
effects, distressing emotional reactions, disruption in
daily routines and activities, and social/peer group challenges (see Table 1). To manage these multifaceted challenges associated with pediatric cancer, children and parents
employed a variety of coping and coping-assistance strategies, particularly those considered approach-oriented
coping (see Table 2). Although the overall sample identified a broad range of coping methods, relatively few
unique strategies were identified within each family
(mean = 4.6, SD = 1.24, range = 2-6). More specifically,
children reported between 0 and 3 coping strategies
(mean = 1.47, SD = 0.99), whereas parents endorsed
between 2 and 6 types of coping assistance strategies
(mean = 3.33, SD = 1.18).
Child Cancer-Related
Stressors (Child Report)
Cancer treatment and side effects. Children noted a wide
variety of stressors related to cancer treatment and side
effects, including pain, hair loss, needle sticks/port access/
spinal taps, taking medicine, hospital visits and/or staying
overnight at the hospital, and sleep difficulties. Examples
of childrens responses are included below.
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Hildenbrand et al.
Table 1. Child Cancer-Related Stressors
Distressing emotional
reactions
Child Report
Parent Report
Social/peer group
challenges
Parent
Approach coping
Cognitive restructuring
Relaxation
Practical strategies
Seeking social support
Expressing feelings
Avoidant coping
Distraction
Promoting distraction
Distressing emotional reactions. Children reported several stressful emotional reactions, such as feeling scared
or nervous, dealing with uncertainty, fear of death, thinking about being sick, and not wanting to discuss their
cancer. Sample responses are included below.
[Finding out I had cancer] was just really, really
scary for me. . . . I kind of didnt know what was
going to happen next. (Child participant, age 9,
male; dealing with uncertainty, feeling scared)
[When I found out I had cancer] I wasnt sure if I
was going to survive and I wasnt sure what was
348
Child Cancer-Related
Stressors (Parent Report)
Cancer treatment and side effects. Parents also reported
a range of perceived child stressors related to cancer treatment and side effects, including pain and/or other side
effects of treatment, hair loss, needle sticks/port access/
spinal taps, taking medicine, and going to and/or staying
overnight at the hospital. Sample responses are provided
below.
The hardest thing was probably the stem cell transplant. That was almost a month long stay here and
the side effects were really bad. He had mouth sores
[and] he couldnt eat or drink. (Parent participant,
child age 7, male; pain and/or other side effects of
treatment)
I would say losing hair was the hardest. . . . It was
the first physical sign that there was a problem.
(Parent participant, child age 9, female; hair loss)
She is so petrified, shes terrified of needles. I dont
know where that came from. [Initially], she wasnt
afraid of needles. But somewhere along, between
then and now, shes terrified of needles. (Parent
participant, child age 11, female; needle sticks/port
access/spinal taps)
Distressing emotional reactions. Parents perceived that
their children experienced a variety of distressing emotional reactions such as feeling sad, scared, and/or nervous,
dealing with uncertainty, fear of death, and questioning:
Why me? Sample parent responses include the
following.
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Hildenbrand et al.
[One of the most difficult things for her is] kids picking on her . . . theyd say like, Whats that on her
head? because she had scars from her surgery. And
she always said, Mom, I dont want to go through
this no more, because kids pick on me. (Parent participant, child age 8, female; peer bullying/ teasing)
I think her biggest issues right now are reintegrating
herself with her friends. She hadnt been around
any of them for 7 months. There are friends that
disappear. There are friends that are now mean or
jealous . . . because [my daughter] gets all the attention. [She] struggles with the emotional aspect of
being disconnected for so long. (Parent participant,
child age 10, female; difficulty maintaining relationships)
350
Discussion
Consistent with extant literature (Armstrong & Horn,
1995; Hedstrom et al., 2003; Ljungman et al., 1999),
findings from this study indicate most distress experienced by children during cancer treatment is associated
with treatment rather than the cancer itself. As in previous studies (Kazak et al., 2002; Klosky et al., 2007; Pai
et al., 2007), demanding medical regimens (eg, resulting
in hospitalizations/missed school), painful medical procedures (eg, needles), treatment side effects (eg, hair
loss), disruption in daily routines (eg, missing home/
friends/school), and the threat of death emerged as stressful components of the childhood cancer experience.
Results from this study also provide support for previous
investigations documenting social difficulties (eg, peer
bullying or teasing) for children with cancer (Barrera &
Schulte, 2009; Fraser, 2003; Lahteenmaki, Huostila,
Hinkka, & Salmi, 2002) and distressing emotional reactions (eg, anxiety, sadness) for childhood cancer patients
(Patterson et al., 2004). Highlighting the diverse myriad
of treatment-related emotional and psychosocial challenges that children with cancer and their families navigate, these findings concur with results from numerous
studies to underscore the need for comprehensive medical care that incorporates psychosocial support for these
pertinent issues.
Although parents report of child stressors generally
reflected childrens own responses, parents did not report
several difficulties endorsed by their children, including
sleep problems, being restricted to the home, not wanting
to discuss cancer, and thinking about being sick. Parental
awareness of these stressors likely requires direct communication from children, as these difficulties may not be
apparent or easily observed by parents themselves.
Likewise, parents reported that their children experienced
several cancer-related stressors that children themselves
did not identify, including feeling sad, questioning Why
me? and adjusting to changes in routines and social or
peer group challenges. These discrepancies in parent
child report may be a result of various methodological
limitations; for instance, parents may have interpreted the
interview questions more broadly than did their children.
Additionally, research suggests that parents own emotional reactions and level of distress may significantly
influence their assessment of their childs behavior and
emotions (Briggs-Gowan, Carter, & Schwab-Stone, 1996;
Chelser & Barbarin, 1986; Treutler & Epkins, 2003;
Vance, Morse, Jenney, & Eiser, 2001). Alternatively,
these discrepancies may reflect reduced or impaired family communication surrounding cancer-related stress, a
trend that has been documented in the adult cancer literature. For instance, Zhang and Siminoff (2003) found
that among their sample of families of cancer patients,
approximately two thirds experienced communication
problems. Given that higher levels of open family communication are associated with better psychosocial outcomes for pediatric cancer patients (Kupst & Schulman,
1988), facilitating communication between family members around cancer-related stress may serve as a vehicle
for helping parents best support their children during
cancer treatment.
Findings from this study highlight that, across families, children and their parents use a wide range of coping
and coping assistance strategies to manage the physical,
emotional, and practical challenges associated with pediatric cancer during treatment. Unlike previous studies,
which have suggested that children with cancer exhibit
greater reliance on avoidance coping strategies (Bauld,
Anderson, & Arnold, 1998; Phipps, Fairclough, &
Mulhern, 1995), findings from this study indicated an
emphasis on approach-oriented coping and coping assistance strategies. This finding could be a result of differences in research designs (ie, examining breadth in the
current study vs frequency of coping strategies in
351
Hildenbrand et al.
previous research). Although a range of strategies were
reported across the sample, within families relatively few
(in some cases as few as 2) strategies were reported, suggesting that families may benefit from increased support
and education from medical teams to learn additional
strategies for coping with cancer-related stressors. Given
the variability of preferred coping strategies and stressors
across children and families, early interventions for augmenting childrens and families repertoires of coping
techniques may be optimally effective when tailored to
each child and familys experience (Kazak et al., 2007).
Findings indicate close congruence between endorsed
child coping and parent coping assistance, thereby extending existing research on general socialization of coping to
include children with cancer and their parents. Few exceptions to this trend were identified; specifically, while children reported using emotional expression as a coping
strategy, parents did not report helping their child cope by
encouraging or supporting emotional expression. This finding may reflect previous literature indicating that family
members commonly prohibit or limit displays of emotion
in response to pediatric cancer diagnosis (Koch, 1985).
According to Koch (1985), this family pattern may be rooted
in efforts to avoid discussing frightening feelings or fear
that emotions will overwhelm other family members.
Alternatively, it is possible that children naturally engage
in emotional expression or that parents encourage childrens expression but do not consider it a coping strategy.
Coping strategies parents encouraged that children did not
endorse included taking control and seeking spiritual support. It is unclear whether this discrepancy is attributable
to methodological limitations, as children may have
implemented these strategies but simply failed to articulate
them. Given the important role parents play in helping their
children cope, medical teams and early interventions may
consider incorporating parents as coaches to assist children
in implementing effective coping strategies for cancer and
cancer treatment-related stressors. In particular, research
suggests that many parents experience uncertainty and distress in facilitating painful medical procedures (LaMontagne,
Wells, Hepworth, Johnson, & Manes, 1999; Vance & Eiser,
2004) and that inconsistent or vague behavioral commands and coping assistance efforts are associated with
greater child distress both before and during these procedures (Dahlquist et al., 2001; Dahlquist, Power, & Carlson,
1995). Thus, enhancing parents ability to provide specific
and direct instructions and support to their children during painful treatment procedures may be beneficial for
decreasing child procedural distress.
Although this study contributes to our understanding
of the coping strategies children with cancer employ and
the coping assistance parents provide to manage cancerrelated stress during treatment, several study limitations
should be noted. First, the study included a small number
352
Conclusion
This study extends previous research by examining stressors and coping of children during active cancer treatment.
Results suggest that during treatment, families possess
few strategies to cope with the physical, emotional, and
psychosocial challenges associated with pediatric cancer
and its treatment. Although child and parent report of coping and coping assistance generally overlap, several
discrepancies were noted, underlining the importance of
completing assessments with both children and parents to
obtain a more comprehensive evaluation of child functioning during the cancer experience. Given these findings, focused intervention on improving childparent
communication around stressors and coping may be beneficial in promoting positive adjustment to the cancer
experience. In addition, families may benefit from early
interventions that teach a variety of coping strategies for
managing cancer and treatment-related stress. Future
research should continue to clarify coping and coping
assistance strategies that may promote positive outcomes
for specific stressors during pediatric cancer treatment.
Acknowledgments
We would like to acknowledge the contributions of Kristen
Kohser and Leela Jackson for their commitment and assistance
with this work, as well as the patients and families who provided
their time and insight to this project.
Funding
The author(s) received no financial support for the research,
authorship, and/or publication of this article.
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Bios
Aimee K. Hildenbrand is a clinical research assistant at the
Center for Injury Research and Prevention at the Childrens
Hospital of Philadelphia and an undergraduate psychology student at Drexel University.
Kathleen J. Clawson, MSEd, is a research assistant at the
Center for Injury Research and Prevention at the Childrens
Hospital of Philadelphia and a first year doctoral student at
Rutgers University.
Melissa A. Alderfer, PhD, is a psychologist in the Cancer
Center at The Childrens Hospital of Philadelphia and an assistant professor of pediatrics in the Perelman School of Medicine
at the University of Pennsylvania.
Meghan L. Marsac, PhD, is a pediatric psychologist and director of training at the Center for Injury Research and Prevention
at the Childrens Hospital of Philadelphia.