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Journal of Pediatric Oncology

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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

Coping With Pediatric Cancer: Strategies


Employed by Children and Their Parents
to Manage Cancer-Related Stressors
During Treatment

Journal of Pediatric Oncology Nursing


28(6) 344354
2011 by Association of Pediatric
Hematology/Oncology Nurses
Reprints and permission:
sagepub.com/journalsPermissions.nav
DOI: 10.1177/1043454211430823
http://jopon.sagepub.com

Aimee K. Hildenbrand1, Kathleen J. Clawson, MSEd1, Melissa A. Alderfer, PhD1,2,


and Meghan L. Marsac, PhD1

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

the advancements in pediatric cancer survival rates over


the last several decades (Ries et al., 2007), a better understanding of how to provide support for the range of
treatment-related challenges incurred by children and
their families has become increasingly important.
The vast majority of psychooncology literature has
focused on survivors, with few studies examining psychosocial functioning during active treatment. Research
focusing on the on-treatment period suggests that a significant subset of families experience negative psychosocial sequelae, including high levels of distress, anxiety,
and irritability (Collins et al., 2000; Houtzager, Grootenhuis,
Caron, & Last, 2003; Kazak, Boeving, Alderfer, Hwang,
1

The Childrens Hospital of Philadelphia, Philadelphia, PA, USA


University of Pennsylvania, Philadelphia, PA, USA

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

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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

and model approach coping strategies such as adopting a


hopeful outlook (ie, cognitive restructuring) and promoting family cooperation and support (ie, social support;
Sanger, Copeland, & Davidson, 1991). The help that
parents provide to their children in this regard has been
termed coping assistance (Prinstein, LaGreca, Vernberg,
& Silverman, 1996).
Given the significant levels of distress reported by
children and families during cancer treatment, a more
comprehensive understanding of how children cope and
how parents help their children cope during cancer treatment has direct implications for both intervention development and clinical practice. Toward this goal, this study
employed a qualitative design to examine the following
research questions:
Research Question 1: What cancer-related stressors
(by child and parent report) do children experience during cancer treatment?
Research Question 2: What coping strategies do
children employ to manage cancer and cancer
treatment-related stress?
Research Question 3: What types of coping assistance do parents provide to their children to manage cancer and cancer treatment-related stress?

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.

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Journal of Pediatric Oncology Nursing 28(6)

Data Collection Instrument


Semistructured interview (child and parent versions). A
semistructured qualitative interview guide was developed
to assess childrens cancer-related stressors (by child and
parent report) as well as child coping and parent coping
assistance strategies used to manage these challenges.
Primary structured questions for this measure included
the following:
1. What was hard for (you/your child) when you
found out that (you/he or she) had cancer?
2. What has been hard for (you/your child) during
cancer treatment?
3. What things do you do to (cope/help your child
cope) or deal with (your/his or her) cancer/
cancer treatment?
Primary structured questions were followed by various
prompts (eg, What else was hard? Can you tell me
more? What else have you done?) to clarify or
expand on participant responses regarding cancer-related
stressors, child coping, and parent coping assistance
strategies.

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

cancer-related stressors (by child and parent report) as


well as coping and coping assistance strategies. After initial coding of the data, raters met to review, discuss, and
resolve discrepancies in the application of codes and to
clarify or revise coding criteria. These discussions served
primarily to enhance the teams understanding of the data
and ensure interrater reliability (Armstrong, Gosling,
Weinman, & Marteau, 1997). Subsequently, all transcripts were recoded based on the newly revised coding
criteria. Three rounds of this iterative coding process
were employed to produce a final collective coding of the
data. Final coding interrater reliability was high (92.75%
agreement).
Data were entered into NVivo (Version 8; Gibbs,
2002) for analysis of themes within child cancer-related
stressors, child coping attempts, and parent coping assistance. Thematic saturation of child stressor data (ie, when
no new themes were identified) occurred after interviewing the 14th childparent dyad. Saturation of coping and
coping assistance data was reached after interviewing the
10th childparent dyad. Verified by data replication or
redundancy, saturation is commonly regarded as an indicator of the completeness of a data set and provides validation for the coding categories used (Bowen, 2008;
Padgett, 2008).

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

Cancer treatment and side


effects

Distressing emotional
reactions

Disruption in daily routines


and activities

Child Report

Parent Report

Pain and/or other side effects of


treatment
Hair loss
Needle sticks/port access/spinal taps
Taking medicine
Hospital visits
Staying overnight at the hospital
Sleep difficulties
Feeling scared or nervous
Feelings of uncertainty
Fear of death
Thinking about being sick
Not wanting to discuss cancer
Wanting to be normal
Missing home/family/friends
Missing school
Being restricted to home

Pain and/or other side effects of


treatment
Hair loss
Needle sticks/port access/spinal taps
Taking medicine
Hospital visits
Staying overnight at the hospital

Feeling scared or nervous


Feelings of uncertainty
Fear of death
Feeling sad
Questioning: Why me?
Wanting to be normal
Missing home/family/friends
Missing school
Adjusting to changes in routines
Peer bullying/teasing
Difficulty maintaining relationships

Social/peer group
challenges

Table 2. Coping and Coping Assistance Strategies


Child

Parent

Approach coping

Cognitive restructuring
Relaxation
Practical strategies
Seeking social support
Expressing feelings

Encouraging cognitive restructuring


Promoting relaxation
Encouraging practical strategies
Promoting social support
Encouraging use of information
Encouraging child to take control
Establishing plans and routines
Asking for assistance from the medical team
Engaging in supportive actions
Using reinforcement strategies
Encouraging spirituality

Avoidant coping

Distraction

Promoting distraction

Its kind of scary when I have to get my port needle


in. . . . Even though its numb, I still dont like it.
(Child participant, age 7, male; needle sticks/port
access/spinal taps)
Its kind of hard to sleep because sometimes
when I lay down and close my eyes I feel a little
dizzy . . . its hard and since I have an IV and Im
getting fluids, I have to go to the bathroom, so I
feel like I have to wake up and start all over
again, and I get a little dizzy and nauseous all
over again. (Child participant, age 9, female;
sleep difficulties)

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

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Journal of Pediatric Oncology Nursing 28(6)

going to happen, and I was really afraid of my hair


falling out. (Child participant, age 10, female; feeling scared, fear of death)
Disruption in daily routines and activities. Children reported
stressors associated with disruption in daily routines and
activities, such as wanting to be normal, missing home/
family/friends and/or school, and being restricted to the
home. Sample responses include the following.
[The hard part of finding out I had cancer was] that
I had to stay up here and I barely got to see my
family. (Child participant, age 10, female; missing
home/family/friends)
I dont like to go to the hospital so much. . . . I [am]
missing my school things . . . like art and music.
(Child participant, age 8, female; missing school)

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.

She wants to . . . go home and be a kid. . . . I mean,


believe me, she gets down. She cries. And she
doesnt want to come in for chemo because she
knows the toll it will take on her. (Parent participant,
child age 11, female; feeling sad)
I think [the hardest part of treatment] for him is the
anticipation of whats coming next. . . . If he knows
somethings going to happen Friday, hell start
worrying about it 2 days before. (Parent participant, child age 8, male; feeling scared/nervous)
I think, [in the] back of her mind, she [is] always
thinking about dying . . . [She has thoughts] like,
If I dont get my treatment, Im going to die.
(Parent participant, child age 10, female; fear of
death)
[The hardest aspect of the cancer for my child is her
questioning] Why her? . . . she believes what you
put out is what you get back, so she had a hard time
trying to figure out what she did to have this happen
to her. (Parent participant, child age 11, female;
questioning: Why me?)
Disruption in daily routines and activities. Parents identified a number of child stressors associated with disruption
in daily routines and activities, including wanting to be
normal, missing home/family/friends and/or school, and
adjusting to changes in routines. Examples of parent
responses are provided below.
I think [the hardest part for my son] was being taken
out of school. . . . He just wanted to be normal and
the chemo. . . . It just made him sick. He just felt . . .
he wasnt himself. And it prevented him from playing with his friends, which was the biggest thing,
not being in school and lacking interaction with his
friends. (Parent participant, child age 9, male; wanting to be normal)
[Being] away from home for so long and away
from his brother [was difficult for him] . . .
[During his stem cell transplant] he couldnt have
any visitors or . . . see anybody for quite some
time. Even after we got home, we kept him clear
of visitors. That was really tough. (Parent participant, child age 7, male; missing home/family/
friends)
Social/peer group challenges. Parents noted social and
peer group challenges incurred by children, such as peer
bullying/teasing and difficulty maintaining relationships.
Sample 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)

Child Coping Strategies


Children primarily implemented approach-oriented strategies, whereas only 1 avoidance strategy was reported.
Approach coping strategies. Approach coping strategies
reported by children to help manage cancer-related stressors included cognitive restructuring, using relaxation,
practical strategies, seeking social support, and expressing feelings. Examples of approach coping attempts are
included below.
I think . . . Im going to get rid of it and its going
to go by and Im young, so its not like I am going
to live with it for . . . the rest of my life . . . I still
have friends and they are still going to think that I
am who I am. . . . Even though I dont have hair and
I have cancer, [if] I just dont think of it as cancer
and dont react to it that much, then my friends
wont either. (Child participant, age 9, female; cognitive restructuring)
[To help me deal with my cancer, I] eat healthier
. . . . It gives me more energy. (Child participant,
age 11, female; practical strategies)
[To cope with my cancer and cancer treatment, I]
try and make as many people come visit me as I
can. (Child participant, age 11, female; seeking
social support)
[I] take a nap . . . play games and paint [to help
myself feel better]. (Child participant, age 10,
female; using relaxation)
I usually write in a journal [when Im upset about
my cancer or treatment]. (Child participant, age 10,
female; expressing feelings)

Avoidance coping strategies. The sole avoidance-oriented


coping strategy reported by children was distraction. An
example of this coping strategy is provided below.
[I] find a distraction like watching TV . . . going to
sleep . . . or listening to my mother read to me [to
make my cancer easier to deal with]. (Child participant, age 10, female; distraction)

Parent Coping Assistance Strategies


Parents reported promoting a variety of approach coping
strategies, with only 1 avoidant strategy indicated.
Approach coping assistance strategies. Parents in this
sample endorsed various approach-oriented coping assistance strategies, including encouraging cognitive restructuring, promoting relaxation, encouraging practical
strategies, promoting social support, encouraging use of
information, encouraging child to take control, establishing plans and routines, asking for assistance from the
medical team, engaging in supportive actions, using reinforcement strategies, and encouraging spirituality. Examples of approach coping attempts are included below.
Sometimes she wonders what she did to deserve it.
[We talk] about how its nothing shes said or done,
that its a learning experience. (Parent participant,
child age 11, female; encouraging cognitive
restructuring)
[Before surgeries] we do this thing where she just
relaxes, breathes, pictures something in her head. I
just calmly . . . ask her, Where [do] you want to
be? Youre in the ocean, youre in the water . . . just
float, let the waves wash over you, wash all this
away. (Parent participant, child age 11, female;
promoting relaxation)
When hes getting an IV, we make sure that he has
a stuffed bunny with him. When he was going to
chemo I make sure his pillow and his blanket come
along. . . . Just try to make a day that he didnt enjoy
as tolerable as it could be. (Parent participant, child
age 9, male; practical strategies)
We explain it to her so she can understand it and so
she knows whats going on. If shes going to get a
shot. . . . I dont hide it from her. I let her know
beforehand, Youre going to get a shot, so she
knows and shes prepared. (Parent participant, child
age 6, female; encouraging use of information)
Try to give him his space, give him his boundary . . .
[I] dont force him into going outside if he doesnt

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want to go outside . . . [I] let him do his own thing.


(Parent participant, child age 10, male; encouraging child to take control)
We talk about, you know, When youre done with
your treatments, heres what were going to do,
and we set goals and things that were going to do
as a family. . . . We try very hard to make life as
normal as possible, but understanding that theres a
new normal. (Parent participant, child age 10,
female; establishing plans or routines)
I asked [a Child Life specialist to work with him]
and she came in and was wonderful. Thats a really
integral part of this whole treatment. Its been awesome . . . doctors and nurses and everybody.
Theyre so willing to teach as you go along and just
be where you are and just work beyond that. . . .
And they talked to [him in] his terms and let him
touch the equipment and stuff like that. (Parent
participant, child age 8, male; asking for assistance
from medical team)
Avoidance coping assistance strategies. The single avoidant coping assistance strategy reported by parents was
promoting distraction. An example of this coping assistance strategy is included below.
Were always doing something. I never let him just
sit at home and think about a long day at the hospital. (Parent participant, child age 8, male; promoting distraction)

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

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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

of children with diverse cancer diagnoses. However, we


achieved thematic saturation, indicating adequate sampling to answer specific study questions (Bowen, 2008;
Padgett, 2008). Additionally, this study did not investigate the perceived effectiveness of the coping and coping
assistance strategies endorsed or the relationship between
the types of strategies implemented and psychosocial
functioning. To best target interventions to enhance adjustment to pediatric cancer, future research should clarify
the types of strategies that may promote positive psychosocial outcomes for specific stressors during and after
treatment. Current data do not permit the examination of
interactions between child coping and parent coping assistance. A closer examination of these interactions may
help inform interventions that involve parents in providing comprehensive support for pediatric cancer patients.
Last, this study did not assess change in coping over the
duration of treatment. However, it is unlikely that a single
pattern of coping during cancer treatment would emerge,
as trajectories of coping are likely determined by changes
in the particular stressors faced, quantity and quality of
coping resources available, and child or family mastery
over certain chronic stressors. Future research should
clarify potential trends in coping throughout and following the completion of pediatric cancer treatment.

Implications for Practice


Findings from this study have direct implications for both
clinical practice and the development of preventative
interventions to promote adjustment in children with
cancer. Given that children undergoing treatment face
many multifaceted stressors, medical teams may consider
developing and incorporating a comprehensive psychosocial assessment for all pediatric oncology patients and
their families (as parents and children often provide
different perspectives). The 4 general areas of stressors identified in this article (ie, cancer treatment and
side effects, distressing emotional reactions, disruption in
daily routines and activities, and social/peer group challenges) may serve as a guide for determining the most
relevant and pressing issues for families. Identifying the
most relevant stressors and specific needs for each individual child and family can assist medical teams in developing tailored approaches to supporting these families.
Because few coping and coping-assistance strategies
were endorsed within childparent dyads in this study,
families may benefit from early interventions geared specifically toward developing a broader repertoire of coping strategies to manage cancer-related stressors. Given
that childrens coping changes over the course of cancer
(Kupst & Schulman, 1988) and that a specific coping
strategy may not be effective for all types of stressors or
for all individuals facing the same stressor (Aldridge &

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Journal of Pediatric Oncology Nursing 28(6)

Roesch, 2007; K. Miller et al., 2009; Schmidt, Petersen,


& Bullinger, 2003), interventions promoting a wide arsenal of coping strategies may be beneficial. In developing
interventions for this population, current recommendations suggest creating broad-based psychoeducational
interventions that can be tailored to families specific
cancer experience (Kazak et al., 2007). Low-cost, easily
accessible interventions are needed to be able to provide
families with the skills necessary to best fit existing
resources to the demands of the challenges associated
with pediatric cancer and its treatment.

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.

Declaration of Conflicting Interests


The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.

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.

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