Support Care Cancer (2006) 14: 960–966
DOI 10.1007/s00520-006-0024-y
Karen Moody
Marc Meyer
Carol A. Mancuso
Mary Charlson
Laura Robbins
Received: 28 September 2005
Accepted: 11 January 2006
Published online: 26 April 2006
# Springer-Verlag 2006
Presented at the Society for Clinical
Epidemiology and Health Services Research
Conference, San Diego, CA, USA, May
2002.
This study was performed while Dr. Moody
was a National Research Service Award
fellow.
K. Moody (*)
Department of Pediatrics,
Section of Hematology/Oncology,
Children’s Hospital at Montefiore,
Albert Einstein College of Medicine,
3415 Bainbridge Ave. Rosenthall 3,
Bronx, NY 10467, USA
e-mail: Kmoody@Montefiore.org
Tel.: +1-718-7412342
Fax: +1-718-9206506
M. Meyer
Department of Pediatrics,
Weill Medical College
of Cornell University,
New York, NY 10021, USA
C. A. Mancuso
Division of General Internal Medicine,
Weill Medical College,
Cornell University,
New York, NY 10021, USA
ORIGINA L ARTI CLE
Exploring concerns of children with cancer
M. Charlson
Division of General Internal Medicine,
Weill Medical College,
Cornell University,
New York, NY 10021, USA
L. Robbins
Research Division,
Hospital for Special Surgery,
Weill Medical College,
Cornell University,
New York, NY 10021, USA
Abstract Background: Aggressive
treatment protocols in pediatric on-
cology have major effects on the lives
of children with cancer. The effects of
lifestyle changes such as hospitaliza-
tion and home schooling on quality of
life have not been investigated. This
study explores lifestyle effects of
cancer therapy on the quality of life of
children with cancer. The goals of this
study were to identify important
quality-of-life issues from the per-
spectives of children with cancer and
to identify how they think their
experience with cancer treatment
could be improved. Materials and
methods: Pediatric oncology patients
age 5–21 were interviewed individu-
ally. Sample questions included,
“Ever since you got sick, what has
bothered you the most?” and “How
has having this illness affected your
life?” Responses were analyzed using
standard qualitative techniques.
Results: Thirty-one patients were in-
terviewed in depth. Four major
themes emerged including (1) lone-
liness and isolation: the loss of a
normal childhood, (2) decreased
pleasure from food, (3) physical
discomfort and disability, and (4)
emotional responses to cancer, spe-
cifically anger and fear. Their sug-
gestions for improvement included
better-tasting food, more comfortable
hospital décor, and social activities
with children their own age.
Conclusions: Children cited con-
cerns regarding pleasures taken away
as well as pain inflicted due to cancer
treatment. In addition to traditionally
mentioned side effects, children
complained of difficulty enjoying
food and restricted social activity. To
improve the quality of life of children
with cancer, healthcare providers
should focus on potentially modifi-
able variables including food-related
pleasure, hospital aesthetics, and so-
cial activity.
Keywords Qualitative research .
Quality of life . Cancer . Child

Introduction
Long-term therapy for childhood cancer has become more
and more common with the advent of intensive cancer
treatments that cure children with cancer and prolong life in
patients with persistent or relapsed disease. Unfortunately,
approximately 25% of these children ultimately will not go
on to become long-term survivors [19]. Thus, the time
spent receiving cancer therapy may make up a large
percentage of a child’s whole life. These aggressive
treatment protocols successful in curing most patients
and prolonging life in others cause major changes in the
lifestyles of these children. Some of these lifestyle changes
include home schooling, hospitalization, and frequent
clinic visits for infusions of medications and blood
products. Although the general psychological effects of
cancer on long-term survivors have been extensively
studied [19], the effects of these lifestyle changes on
children actively receiving therapy are largely unknown.
The goal of this qualitative study was to explain the effects
of lifestyle changes that accompany the treatment of
childhood cancer and to describe how the children think
their experience of cancer treatment could be improved.
Qualitative methodology was used to obtain in-depth
information regarding the cancer experience from the
children’s perspectives. Such information could be helpful
for the development of interventions that improve the quality
of life of children actively receiving treatment for cancer.
Materials and methods
Pediatric oncology patients were recruited from the outpa-
tient pediatric hematology/oncology clinic and inpatient
wards of New York University Hospital and Medical Center
between February 2001 and December 2001. A diverse
population was included to reflect a range of socio-
demographic backgrounds and different types of childhood
cancer. Children were eligible if they were age 5–21 and
had a diagnosis of cancer for at least 1 month. To get the
most authentic view of the treatment experience, patients
had to be currently receiving chemotherapy. Children were
excluded if they were too cognitively impaired due to their
disease or too ill to participate. Additional children were
added to the study sample until theoretical saturation, that
is, until additional patient interviews revealed no new
concepts. Informed consent was obtained for the study from
the children and their parents after obtaining permission
from the attending physician. This study was approved by
the Institutional Review Board at New York University
Hospital and Medical Center.
A qualitative semi-structured interview format using
grounded theory was chosen to obtain the children’s per-
spectives directly. The children were interviewed in depth
using four open-ended questions. Several simple probes
were used with each question to encourage discussion of
961
many topics and potential life effects of cancer and cancer
treatment. The interview questions were as follows: (1) Ever
since you got sick, what has bothered you the most? (Probes
for each question included: at the clinic, at home, with
friends, with food, with family, with school, with medicine,
and in the hospital.) (2) How has having this illness affected
your life? (3) Are there things that you used to be able to do
that you cannot do anymore? (4) What could we do to im-
prove your overall experience? The language of each of the
questions was tailored to the child in that the terminology
reflected the words they had come to use to describe their
disease. The parents provided this information. In addition,
interviews were conducted in the language of the child’s
choice with the help of a translator: English, Spanish, or
Mandarin. The interviews were done one-on-one with or
without the parents present, depending on the preference of
the child. These children were encouraged to say whatever
came to mind regarding their life experience with cancer and
were not given any time limits. The primary investigator
conducted all of the interviews and recorded them verbatim
by hand.
Data analysis
Interview transcriptions were evaluated using common
summative techniques for coding qualitative data, namely,
open coding followed by axial coding [14]. Specifically, the
data for each question was read line-by-line and broken
down into discrete items, which were labeled with a concept
name that described the meaning of the item. Concepts were
then analyzed along similar and different properties and
dimensions and then grouped into categories (open coding).
Data was reanalyzed within the categorical structure to
develop a contextual framework for the categories. Cate-
gories were compared with categories and subcategories
within and across questions. These categories were analyzed
for convergent and divergent properties, that is, the discrete
categories identified in open coding were combined and
contrasted in context so as to describe a phenomenon, its
causes, and its effects (axial coding.) The resulting broad
themes that emerged to describe the observed phenomena
were then reviewed against the data again to ensure for
accuracy. Another physician, with experience in qualitative
research, analyzed the data independently and then presented
his findings to the primary investigator. Subtle differences in
the concept dimensions were handled by consensus.
Results
Thirty-six patients met the study inclusion criteria but only
32 were eligible to participate. Two patients, one with a brain
tumor and one with acute lymphoblastic leukemia, were
excluded because they were too ill to participate. Two
patients were severely cognitively impaired due to having
962

brain tumors and could not be easily interviewed. All 32 Table 2 Quotes illustrating major concepts expressed by children
patients approached agreed to be on the study. One child did with cancer
not complete the interview due to increasing malaise, leaving Loneliness and isolation and the loss of a normal childhood
31 children to be interviewed in depth. Interviews lasted an “I want to be a normal girl.”
average of 30 min and ranged from 15 to 120 min, 65% of “Some of my friends don’t know how to talk to me because they
which were conducted in English. The majority of par- don’t know how I’ll feel.”
ticipants were male. More than half of the participants had a [What bothers you the most about being sick?] “Being on isolation”
diagnosis of acute lymphoblastic leukemia or brain tumor. “I have no friends here.” [re: hospitalization]
Three patients had undergone autologous stem cell trans- “I think it’s the loneliness; I don’t get out much.”
plants. The characteristics of the patients included are shown “I found out who my real friends were.”
in Table 1. “I know less people.”
Four major themes emerged to describe the most “I want people my own age to talk to.”
pressing concerns of children receiving treatment for “You can’t leave the hospital; you can’t go outside.”
cancer and these themes were corroborated by the “Nothing to do.”
independent investigator. These were: (1) loneliness, “You waste your day.”
isolation, and the loss of a normal childhood; (2) decreased
“No freedom. You can’t do what you want when you want to. You
pleasure from food; (3) physical discomfort and disability;
can’t go anywhere.”
and (4) emotional responses to cancer, specifically, anger
Decreased pleasure from food
and fear. Each of these themes will be discussed separately
“I hate hospital food. I hate it. I hate it. I hate it!”
below. Quotes from the children illustrating these themes
“There’s a lot of stuff you can’t eat. You can’t have no lettuce. You
are shown in Table 2. In addition, children offered many
suggestions for improving their quality of life, which can’t eat fresh stuff.” “Everything has to be boiled.”
related directly to the above themes. Quotes reflecting their “Nauseas. I can’t eat nothing.”
suggestions for improvement are shown in Table 3. “The smell of food is nauseating.”
“The food don’t taste right.”
“I want food that doesn’t smell, like celery sticks, apples, cheese
Loneliness, isolation, and the loss of a normal and crackers, and peanut butter and jelly.”
childhood Physical pain and limitations
“I hate needles. They hurt.”
Children with cancer reported loneliness and isolation “I can’t do a lot of things I used to do, like ride a bike. It took a lot
related to the loss of a normal childhood experience. These of my energy.”
“I get tired. I can’t walk more than one block without getting tired.”
“No more sports. I used to run.”
Table 1 Patient characteristics
“I can’t raise my left arm.”
Age Emotional responses to cancer: anger and fear
Median 14.6 years “I get pissed off easily.”
Range 5–21 years “I don’t want to have cancer!”
Male 63% “The risk to my life!”
Race “It made me more aware of things that can affect me in life.”
Caucasian 41% “Nervousness.”
Latino 41% “I’m mad [because] I can’t go to school.”
Asian 12% “Every night I think about how my mom would feel if I passed
African-American 6% away.”
Diseases
Acute lymphocytic leukemia 44%
Brain tumor 19% children were often unable to engage in normal childhood
Osteosarcoma 17% activities such as going to school and participating in sports,
Ewing’s sarcoma 9% which would routinely keep them connected to their peers.
Hodgkin’s disease 6%
They wanted to be able to do what other children do such as
Non-Hodgkin’s lymphoma 3%
go to school and make new friends, hang out at the mall, and
Hepatocellular carcinoma 3%
graduate with their class. Many had fallen behind in their
schoolwork and would not be going on to college with their
Autologous bone marrow transplant 10%
peers.
Recurrence 19%
Children reported that they had no friends in the hospital.
Median time on treatment 8 months
Although in this hospital and most others there are group
Range of time on treatment 2–102 months
activities in the playroom for hospitalized children, rarely

Table 3 Quotes illustrating suggestions for improvement expressed
by children with cancer, by theme
Suggestions for loneliness and isolation and the loss of a normal
childhood
“More stuffed animals”
“More kids in the playroom”
“Have my sister and brother [in the hospital] with me”
“More magazines for teenagers”
“More posters”
“Teen Room”
“Music Room”
“Plants”
“Decorations”
“Go to school and have more friends.”
“Play outside.”
Ideas to improve food
“Chinese food”
“Foods that don’t smell”
“No hospital trays.”
“Better food”
“Put a Pizza Hut here [in the hospital] and an Italian restaurant.”
“I like Popeye’s.”
How to help with physical pain and limitations
“Better-tasting medicine”
“Less blood draws”
“No needles”
“Magic cream”
“[Medicine that is] less nauseating”
“[Pills that are] easier to swallow”
“Make it [chemotherapy] by mouth.”
Emotional responses to cancer: anger and fear
“They should tell ya’ your gonna’ look you might be dyin’: weak,
bald, skinny. But this is ok. It may be worth it in the end.”
“I want to do art.”
“Deep breathing helps me take my mind off the chemo.”
were the children exposed to others their own age.
Furthermore, many of these children were on isolation
precautions due to severe neutropenia and could not go to the
playroom anyway. Even at home, play dates with friends
were restricted during periods of severe neutropenia. These
children ultimately became disconnected from a peer group,
which leads to their feelings of isolation and loneliness.
Older children occasionally reported that their friend-
ships had changed or taken on a new meaning. They
explained that having cancer changed friendships because
some people were uncomfortable being around a cancer
patient. The friends that kept in contact with them after the
diagnosis of cancer and those that visited them in the
hospital were described as their “real friends.” One
adolescent reported, “It [having cancer] helped me to see
who is really there for me.”
In addition to the disconnection from peers, hospitaliza-
tion and its associated confinement compounded the
963
loneliness and isolation because they felt trapped and
bored. Many children said that they had to stay in bed all
day. They reported feeling restricted in where they could go
and how they spent their time. In particular, the children
seemed to really miss going outdoors to play.
The spontaneous suggestions for improving the experi-
ence with cancer and cancer treatment reflected the
children’s desire to create a more normal environment for
themselves, to foster social connections, and to be able to
enjoy a wider variety of activities. They suggested placing
more stuffed animals, decorations, posters, flowers, and
plants in the hospital and clinic. They wanted a music room,
a teen room, and “more kids in the playroom.” One child
optimistically asked for a pony for the playroom. They asked
to be “teamed up with kids my own age” [in their hospital
room] and to have “people my own age to talk to.” They
wanted to go outside, go to the beach, and swim in the ocean.
A few children just wanted to get out of the hospital and
finally go home.
Decreased pleasure from food
The children reported that food was less enjoyable to them
due to their poor appetites, changes in taste and smell
sensations, emetogenic chemotherapy, and restrictions in
food choices. The major complaint from the children was
“really bad” hospital food, “the worst!” Over and over,
children complained that the food tasted badly, smelled
awful, and made them vomit. Some children put signs
outside their rooms requesting that food services skip them
over. They asked to have roommates who also refused the
food trays so they would not be exposed to the smell. Many
were quite adamant about how much they disliked the food,
regardless of age. In addition to the complaints regarding
hospital food, they had restricted food choices. These
restrictions varied significantly and ranged from the elim-
ination of processed sugar to the elimination of fresh
vegetables. Some of the restrictions were suggested by the
medical staff to reduce the risk of infection from food during
periods of neutropenia and some were imposed by the
parents because of beliefs they had about cancer and diet.
Suggestions for improvement again appropriately reflect-
ed their concerns. Better hospital food was the most
frequently cited suggestion for improvement of the cancer
experience. Some children asked specifically for foods that
do not smell and cited uncooked foods in particular, like
celery sticks, carrots, apples, and peanut butter sandwiches.
Another child suggested putting a pizza parlor in the
hospital.
Physical discomfort and disability
Children cited physical discomfort as a direct effect of cancer
or the administration and monitoring of chemotherapy.
964
Nausea was the most frequent form of discomfort despite
aggressive anti-emetic treatment. Needle sticks were, not
surprisingly, a major complaint for all age groups. Many
children acknowledged that local anesthetic creams and
long-term central line placement decreased pain and
frequency of needle sticks; despite this, they were still a
traumatic event. The limitation of physical function was
another significant issue. Many teens that had participated in
school sports could no longer play. In many instances, this
was a permanent change. Children with new physical
disabilities had a hard time getting around, which com-
pounded their loneliness and isolation. Because of their
illness, they could no longer “play fight” or “do cartwheels
like other kids.” They fatigued much more easily than before
as well.
Similar to the two previous themes, there were sug-
gestions that pertained to disability and discomfort. They
wanted medicine that did not taste badly and would not
make them feel nauseated. They did not want to get stuck
with needles anymore. Children with disabilities affecting
their legs wanted to walk and run again. An older teenager
reported, ”Deep breathing [a technique that he learned in
martial arts] helps me take my mind off the chemo. You
should teach this to other kids.”
Emotional responses to cancer,
specifically anger and fear
The stress of living with cancer was expressed by both
children and adolescents but in different ways. Younger
children reported feeling angry about having cancer and,
despite their young age, seemed aware of the serious nature
of the disease. A 5-year-old boy, when asked “Ever since
you got sick, what bothers you the most?” put his hands up
and emphatically stated, “It’s cancer!” He knew enough to
know that cancer was something very bad to have.
Adolescent cancer patients were more directly in touch
with the mortal danger of cancer. This produced a lot of
fear for them. They were concerned about death and they
worried about how their potential death would affect their
parents. Some children reported a new feeling of vulner-
ability. One teen said, “It made me more aware of things
that can affect me in life.” It was interesting to note that one
teen reported that he thought about death every night, and
when asked if he had been able to talk with anyone else
about this before, he said, “No.”
One patient made a very direct suggestion that would
relate to this theme. He suggested that doctors should
provide more detailed anticipatory guidance of the treat-
ment experience. He stated, “They should tell ya’ your
gonna’ look like you might be dyin’: weak, bald, skinny.
But this is ok. It may be worth it in the end.”
Discussion
Qualitative research techniques use open-ended questions
to learn about the concerns and thoughts of patients without
being restrained by the beliefs of the researcher. This study
describes the most pressing concerns of 31 children with
cancer that were elicited through open-ended, semi-
structured one-on-one interviews. The four major cate-
gories of concern for children with cancer included (1)
loneliness, isolation, and the loss of a normal childhood;
(2) decreased pleasure from food; (3) physical discomfort
and disability; and (4) fear and anger: emotional responses
to cancer. Many of these issues may be common to children
with chronic diseases. We have found that social isolation
for infection precaution and restricted activities that include
a special diet are unique to cancer patients and further
separate their lives from those of normal children.
Loneliness and isolation have been reported in previous
qualitative studies in this population [18]. These studies
also link these emotions to loss of a peer group and to
changes in the quality of their friendships [2, 8]. Normal
childhood roles and socialization processes are disrupted
when cancer treatment becomes the major focus in a child’s
life. The lack of a normal childhood has been discussed
previously in the context of comparisons made to healthy
children [18]. Similar to previous qualitative studies, this
work suggests that reconnecting children with their peers
may impact on these feelings and enable these children to
regain a feeling of normalcy within the context of having
cancer [18]. Children of similar age range within the clinic
or hospital could be encouraged to get to know each other
to foster the development of a peer group within the
confines of their new environment or activities with healthy
school children could be arranged. Regularly coordinated
age-appropriate activity emphasizing social connections
and normal childhood milestones could greatly benefit
these children and give them a sense of community and a
peer group to relate to. In addition, the childhood cancer
experience could be improved by furnishing their hospital
surroundings in a way that would aim to replicate a normal
childhood environment compared with the typical hospital
décor.
A previous qualitative study of pediatric cancer patients
described eating problems as a result of chemotherapy [2].
Decreased pleasure from food was recently reported as an
incidental finding in a qualitative study of adults undergoing
bone marrow transplant that was so impressive to the
researchers that they discussed it in a separate report [9].
They report, “Food is not seen purely in relation to its
nutritional value, but as an important quality-of-life issue.”
The key features in the adult cancer patients they interviewed
that contributed to this problem were changes in taste, food
restrictions, gastrointestinal side effects, and psychological

disturbances. In children, the greatest problems seemed to be
the “lousy” taste and smell of hospital food coupled with
changes in appetite. Both studies point to the need to be more
aggressive in taking dietary histories and inquiring about
appetites and pleasure from food.
Dietary restrictions imposed by the medical staff further
limited the ability of children to enjoy food. In this
institution, a low-bacterial diet was recommended to all
pediatric cancer patients during periods of severe neutro-
penia, and this diet excluded many of the foods that
children specifically desired such as fresh fruit and fast
food. Theoretically, this diet may reduce infections in
neutropenic patients, but it has never been proven effective
in a clinical trial nor has the impact of this diet on quality of
life been previously realized [13]. However, despite the
lack of evidence for it, the diet continues to be
recommended by hospital staff in the non-transplant setting
for neutropenic cancer patients [13]. More data are needed
to properly advise patients regarding diet from both a
practical and a health standpoint. Although dietary guide-
lines are often given to cancer patients, little is known
about what actually constitutes the most palatable,
digestible, and healthful diet for this population. A Swedish
study actually implemented a staffed local kitchen on a
pediatric oncology ward and found that it improved the
psychosocial experience of food and eating for these
children from one of conflict to enhanced social pleasure
potentially leading to improved nutritional status [6].
Side effects of cancer therapy, cancer pain, and the
limitations associated with disability and fatigue have been
extensively reported in the literature [2–4]. Despite the use
of medication, transfusions, and physical rehabilitation,
these problems persist to a significant extent. Psychosocial
interventions may be helpful in assisting children to adjust
to these issues. Relaxation techniques and guided imagery
have been shown to be valuable in attenuating chemother-
apy-induced nausea, procedural anxiety, and chronic pain
[1, 10, 11, 16]. These interventions should be examined in
clinical studies with well-defined clinical outcomes to
implement effective measures into the standard of care.
Anger and fear have also been reported in this popula-
tion [2, 5, 18]. Children were acutely aware of these
sometimes overwhelming feelings. Providing a safe atmo-
sphere for children to express their anger and fear in a
supportive group or with an art or play therapist may help
children to work through some of these emotions
productively. In addition, health care providers could
offer anticipatory guidance regarding the cancer treatment
trajectory as part of their routine care.
Quality-of-life scales currently used in pediatric oncol-
ogy appropriately address physical, psychological, social,
and cognitive function in these children [15]. These scales
would be even more useful if they included specific
questions that pertain to the most commonly reported
patient-identified concerns such as loneliness, isolation,
and decreased pleasure from food.
965
The strength of this study is in its qualitative design,
which allowed children to speak freely and report what was
important to them instead of reflecting back preconceived
notions of the adult researcher. Much of the literature
regarding children’s experiences of cancer report the results
of quality-of-life scales given to parents and the health care
team that care for children with cancer [8, 17]. Despite
generally good agreement between child and parent
reports, concordance remains imperfect and it cannot be
assumed that reports from parents always accurately reflect
the views of the children [12]. The inherent structure of the
quality-of-life scales provides a method to standardize
results when comparing treatments. However, this structure
also imposes the researcher’s theories and generalizations
onto the patients and limits the ability of patients to freely
express their concerns and feelings [17, 18]. In addition,
without in-depth information given to researchers by
patients, one cannot be sure that the scales are truly asking
the right questions with regard to quality of life.
The second major strength of this work was the inclusion
of children who were in their active treatment phase of
cancer. This is in contrast to the majority of the current
literature regarding the quality of life for children with
cancer, which deals with cancer survivors and their
adjustment back into normal life [7, 8]. This study elicited
the concerns of children actively receiving treatment to
understand the treatment experience for all children with
cancer, even those that may not survive.
The limitations of this study include having only one
interviewer, which could introduce bias, and the use of only
one interview per patient. Serial interviews of patients at
different stages of their disease could provide a more
complete picture of the cancer experiences. For example, it
could help to gain more insight into the factors that help
and hinder the process of coping with cancer and ag-
gressive cancer therapy. Parallel interviews with parents
and family members would create an even richer context
for interpreting these factors. Such interviews might be
especially useful in cases where children are too
cognitively impaired to participate themselves. These
children, although relatively small in number, were
excluded from this study and, therefore, the results do
not reflect their specific concerns. The applicability of
these results to severely cognitively impaired children is
similarly questionable.
Conclusions
Children with cancer often receive relatively long-term
intensive chemotherapy regimens that provide the best
possible chance of cure. These regimens are associated
with many changes in a child’s life. The major impact of
this is that children with cancer do not participate in many
of the activities and socialization processes that are integral
to having a normal childhood, and this results in feelings of
966

loneliness and isolation. Food and eating, once considered
pleasurable, also becomes a significant source of distress.
In addition, nausea, pain, and disability are frequently
encountered as a result of cancer and cancer therapy.
Finally, all these changes as well as the life-threatening
component of cancer bring about feelings of anger and fear.
It is important to note that some of these issues are
modifiable. In addition, quality-of-life scales need to
include questions regarding pleasure from food and social
isolation to more accurately measure quality-of-life out-
comes in this population.
Children with cancer would like to be able to have a
more normal childhood which includes having a peer
group, engaging in age-appropriate activity in a child-
friendly environment, enjoying food, and having less pain,
nausea, disability, anger, and fear. Strategies that aim to
model normal childhood experiences may help to lessen
the tremendous impact of cancer and its treatment on the
lives of these children.
Acknowledgement The authors thank Dr. Evan Leibowitz for his
independent data analysis

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