Journal of Advanced Nursing, 1999, 30(1), 193199

Issues and innovations in nursing practice

Determinants of parental decisions on `drop

out' from cancer treatment for childhood
cancer patients
Chao-Hsing Yeh RN PhD
Assistant Professor, Graduate Institute of Nursing Science,
Chang-Gung University, Taiwan

Chiou-Fen Lin RN
Associate Head Nurse, Chang-Gung Children's Memorial Hospital at Lin-Ko,
Taiwan

Jia-Ling Tsai RN MSN

Lecturer, School of Nursing, Chang-Gung University, Taiwan

Yu-Mei Lai RN MSN

Lecture, School of Nursing, National Taiwan University, Taiwan

and Hsueh-Chen Ku RN
Registered Nurse, Mackay Memorial Hospital, Taiwan, Republic of China

Accepted for publication 7 August 1998

YEH C.H., LIN C.F., TSAI J.L., LAI Y.M. & KU H.C. (1999) Journal of Advanced Nursing
30(1), 193199
Determinants of parental decisions on `drop out' from cancer treatment for
childhood cancer patients
Little is known about the psychosocial process of parental decisions on `drop
out' from cancer treatment for paediatric patients in Taiwan. This study, based
on structured in-depth interviews, attempted to document the determinants of
parental decisions on drop out. A total of 19 parents of paediatric cancer
patients who dropped out from a cancer treatment for at least a month within
3 years since rst treatment were interviewed. Content analysis of qualitative
data revealed six categories of determinants associated with parental decisions:
suffering severe pain from medical treatments and adverse side-effects; desire
for better and less painful treatments; adverse effect of other patients' experiences; searching for possible explanations for disease after prolonged denial of
diagnosis; lack of empathy from health care professionals; and misinterpretation
of improved prognostics. These ndings reected the deciency of psychological and emotional support for parents from health care professionals prior to
and during cancer treatment.

Keywords: cancer treatment, drop out, nursing care, paediatric, parental

decision

Correspondence: Chao-Hsing Yeh, 259 Wen-Hwa 1 Rd, Kwei-San,

Tao-Yuen, Taiwan, Republic of China. E-mail: cyeh@mail.cgu.edu.tw

1999 Blackwell Science Ltd

193

C.H. Yeh et al.

total, we interviewed 15 mothers and four fathers who
were the primary caregivers of 19 patients, respectively.

INTRODUCTION
Recent advanced cancer treatments for paediatric cancer
have dramatically altered survival rates and the patients
disease-free at 5 years (Kersey 1997). Completion of an
appropriate treatment is essential for the cure and survival
of paediatric cancer patients (hereafter called patients).
Sufcient psychological and emotional preparation of
their family, particularly of their parents or legal guardians (hereafter called parents), is fundamental for the
completion of such intensive treatments (Conatser 1986).
A `drop-out' is a termination of a therapy prior to the
completion of a predetermined treatment protocol or
earlier than a therapist's recommendation (Pekarik 1985,
1992). According to the cancer treatment for high risk
paediatric cancers used by the Taiwan Paediatric Oncology
Group (TPOG), which is updated yearly, the duration of a
treatment may vary from 6 months to 3 years for different
diagnoses (Lai 1996). The parents of paediatric oncology
patients often make the decisions on termination or
completion of cancer treatment without discussion with
their child, from our clinical experiences. Although the
parents have the responsibility to make such a decision, it
is the responsibility of health professionals to provide
adequate information and advice regarding the disease and
the prospective treatment. However, the lack of understanding of the process of parental decision making and the
lack of communication skills often prevent health professionals from giving adequate advice to parents. Without
such information and advice, no parents could possibly be
well prepared psychologically and emotionally for the
completion of a long-lasting medical treatment. In this
study, we attempted to explore the determinants and the
process of parental decisions on paediatric cancer treatment, which may provide insights into possible nursing
interventions.

METHOD
Participants
The selection criteria for participants included parents
with children who had an oncology diagnosis and were
under 18 years old, and had dropped out from the cancer
treatment for at least a month within 3 years since the rst
treatment. To identify eligible participants, the research
team contacted the Childhood Cancer Foundation of the
Republic of China (ROC) which had collected statistics
and related treatment information regarding paediatric
oncology yearly in Taiwan. Initially, 43 eligible families
were identied. Of these, three patients died before this
study, the parents of two patients refused to participate,
18 could not be located, and one patient (aged 15+)
answered questions by himself and was not included. In

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Methodological approach
A structured, individual in-depth interview guide was
constructed based on the authors' previous experiences and
recent literature. The interview guide was piloted for three
parents of children with paediatric cancer in order to
determine the adequacy of questions. The nalized interview guide included, but was not limited to, the following
questions: (i) Who made the decision for drop out from
cancer treatment? (ii) Why did you decide to drop out from
cancer treatment? (iii) What happened to your child after
he/she dropped out from cancer treatment? (iv) Has your
child received any alternative therapy after drop out? All
interviews were conducted in Chinese by two nurses with
three or more years of experience in paediatric oncology.
Fourteen parents were interviewed over the telephone, and
the other four were interviewed face to face on hospital
wards. The interviews were begun with general topics such
as the children's situation, their concerns about the disease,
and their personal interests, and then moved to more
specic topics following the interview guide. At the end of
each interview, the parents were encouraged to ask questions. The interviewers claried parents' questions related
to the disease and provided answers or advice. In addition,
medical information and demographic data about the
parents and patients were also collected, i.e. diagnosis,
type of treatment, time of drop out, age at diagnosis, gender,
primary caregiver, occupation of parents, number of
siblings, and religious belief of the family.

Ethical procedures
The approval for studying human subjects was obtained
from the Childhood Cancer Foundation of ROC before the
study began. Its established procedures for protecting
anonymity and condentiality were strictly followed.
Eligible subjects were identied through the Childhood
Cancer Foundation of ROC; verbal consent for participation in interviews was obtained from the parents prior to
interviews. The parents were interviewed between 1995
and 1996. The interviewers assured the parents of
condentiality at the beginning of each interview. The
duration of interviews varied from 30 to 120 minutes
according to the content and progress of the interviews.
Identication of participants on written verbatim transcriptions was removed immediately after each interview,
and all materials were stored in a secured ofce.

Data collection and analysis

Criteria outlined by Lincoln & Guba (1985) and Sandelowski (1986) were followed to ensure the trustworthiness of

1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(1), 193199

Issues and innovations in nursing practice

the data. To ensure truth value, the authors used methods of
prolonged engagement (until data analysis reached saturation from the authors) and peer debrieng (one of the
authors who has a PhD in nursing and expertise on
qualitative analysis). The process of data analysis was
guided by an author (Yu-Mei Lai, a senior faculty member in
paediatric oncology nursing). To ensure consistency of
interviewing techniques and skills, two interviewers were
trained and practised until their interview skills were
consistent and appropriate. The structured interview guide
was used for all of the interviews. Thick descriptions of
parents' views were provided for readers to examine how
the authors reached the conclusions from the data. The
verbatim transcriptions were given to participants to check
before the analysis was completed.
Content analysis (Kelly & Sime 1990) based on the
research questions was used to discover the similarities
and differences between the interviews. For each interview, the authors coded the raw data independently after
the data were transcribed. The coding from both authors
was compared and discussed until agreements were
reached, and then the data were combined for each
patient. After all the interviews were completed, the data
were summarized and classied according to categories as
presented in this report.

Childhood cancer treatment

Fate of the drop outs

After having dropped out from the cancer treatment, one
child died at 7 months following drop out, two were
under critical care at the time of the interviews, and 15
were re-hospitalized and underwent additional treatment
because of relapse, sepsis and cancer-related pain. During
the drop out period, all patients used at least one alternative therapy, including non-prescribed Chinese herbal
medicine (n 14), prescribed traditional Chinese medicine (n 10), and non-prescribed healthy herbal food
(n 5). The parents of one patient sought help from a
fortune-teller and hoped to change the progress of the
child's disease.

Decision-makers
The decisions on early termination of the cancer treatment
were made by parents (n 13, 68%), or grandparents
(n 3), or the patient (n 2), or other legal guardians
(n 1). Two patients aged 10 and 12 years made the
decisions for themselves. Only three patients aged
1012 years were involved in the discussion regarding
drop out with their family.

Reasons for drop out from the treatment

RESULTS
Characteristics of patients
Of the 19 eligible patients, 12 were girls and seven were
boys. Their ages averaged 879 (SD 418) years. Eighteen
of them dropped out from the cancer treatment within
3 months (mean 272, SD 184) since the time of rst
treatment, and one did during the 13th month since the
rst treatment. The disease diagnoses included leukaemia
(n 14, 74%), lymphoma (n 2, 11%), and others
(n 3, 19%). Of 12 school age children, only two
continued to go to school.

Characteristics of parents
Of the 19 parents interviewed, 14 were mothers, with an
average age of 357 (SD 633, range from 25 to 48 years)
and average education of 97 years (SD 336); ve were
fathers, with an average age of 386 (SD 658, range from
27 to 48 years) and average education of 1185 years
(SD 335). The family incomes were primarily from
fathers (n 19), but may be from mothers as well
(n 6). Primary caregivers were generally mothers
(n 14, 70%). All of the parents were married and lived
together. Religious beliefs of parents included Taoism and
Buddhism (n 16), Catholic (n 1), and none (n 2).
The number of siblings in the same household ranged
from one to ve with a mean of 285 (SD 099).

The reasons for drop out can be briey summarized, in order

of importance, into six aspects: (i) suffering severe pain
from medical treatments and adverse side-effects; (ii) desire
for better and less painful treatments; (iii) adverse effect of
other patients' experiences; (iv) searching for possible
explanation for disease after prolonged denial of diagnosis;
(v) lack of empathy from health care professionals; and (vi)
misinterpretation of improved prognostics.

Suffering severe pain from medical treatments

and adverse side-effects

Severe pain from medical treatments, such as bone marrow

aspiration (BMA) and intrathecal injection (IT), discouraged the patients and their parents from the completion of
the cancer treatment as reported by all participants interviewed. Even when pain-reduction procedures, such as
eutectic mixture of local anaesthetics cream (EMLA), were
introduced, patients still feared procedures and became
upset (cried) before and during the procedures. The
frequently reported side-effects included persistent vomiting, nausea, fatigue, fever, oral and anal ulcers, and consequent eating disorder and loss of weight. The parents felt
hopeless and considered themselves useless when encountering such situations, and consequently disturbed emotionally. The following excerpts illustrate this:
Whenever he took the cancer treatment, he had persistent
vomiting and nausea, he could not eat anything at all. My child
was getting thinner day by day. We tried to complement him with

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C.H. Yeh et al.

richer nutrition food, it still did not work. He lost his appetite
during the treatment.
Hardly, she completed the protocol, however, the fever
[neutropenic fever] made her stay in hospital again. Her WBC
[white blood cell] count was so low. We were afraid of her infection
again. When she had fever, we felt so hopeless and very sorry for
her. We wish there is anything we parents could do for her.
During the procedure, she was always crying and ghting. In
addition to oral and anal ulcers, she was very upset about hair
loss. She refused to have any further treatments.

Desire for better and less painful treatments

The majority of parents (14 out of 19) had their children

try at least one kind of alternative therapy, e.g. prescribed
Chinese herbal medicine, non-prescribed herbal
medicine, and healthy herbal food. Alternative therapies
may give parents `hope' for a cure or improvement of the
prognostics when no apparent improvement has been
achieved from cancer treatment. No parents reported any
discussion with physicians regarding alternative
therapies. Parents were afraid of receiving less care from
physicians if they expressed their doubts about the
effectiveness of the ongoing therapy, or the professional
authority of the physicians. In addition, physicians held
negative perspectives regarding alternative therapies, e.g.
lack of scientic proof of the mechanics of herbal
medicine, possible interference with ongoing cancer
treatment, etc. In general, medical professionals were
reluctant to discuss alternative therapies even though they
acknowledged that their patients were using them.
The parents usually decided to try alternative herbal
medicine based on the recommendations from the parents
of other patients, even without a physician's prescription.
For example, one parent said:

similar diagnosis or prognosis. They shared their experiences in coping with the progress of disease, management
of side-effects, alternative therapies, and more importantly, emotional support for each other. Since they were
experiencing similar difculties, they developed special
relationships with and understanding about each other,
thus their communication had a signicant impact on
their decisions, especially when adequate advice and
emotional support could not be obtained from health care
professionals. `Seeing is believing'; the beliefs from
emotionally close parents often overruled the opinions
of emotionally distant health care professionals. This can
be illustrated by a typical response:
After several medical treatments, the bone marrow aspiration did
not indicate the progress of disease. The only way was to use
higher dose of cancer treatment drug. There was still no progress.
I learned from another mother that survival rate of chemotherapy
was very low. We thought we would better give up the treatment.
The other kid died during the hospitalization. I heard that a lot of
kids with the similar diagnosis to my child's have died. I cannot
let my child keep suffering from such painful treatments and die
eventually. It does not make any sense to continue the treatment.
Some kids had relapsed after the treatments, then died. I do not
want this happen to my baby.

Searching for a possible explanation

for disease after prolonged denial of diagnosis

decided to take the same herbal medication.

As a result of unpredictable treatment effect, and uncertainty of prognostics in addition to severe side-effects, four
devastated parents tried to seek alternative explanations
for their child's disease from religious beliefs. For example, Buddhism and Taoism explained disease as past sin
presenting as a present obstacle. Praying and reading
scripture might give parents strength and hope to help
them cope with the disease. For example, one parent
sought help from fortune-tellers and hoped they could
change the fate of the child, as can be seen in the following
interview excerpts:

In my belief, Chinese medicine has a huge history of thousands of

It is because of the original sin of my child. Whatever he did in his

I listened to the other mothers whose kids have similar diagnosis

of mine. Her child took some herbal medicine and looks a healthy
child. There is no discomfort or any symptom. Therefore, we

years. Chinese medicine must be better than the western. Western

past life is returning to his present life. I have been praying for my

medicine is only good for acute phase of disease. A chronic

child everyday and contributed money to the festival events to

disease, such as cancer, can only be cured by regulating body

rectify his past sin. I hope his sin be resolved and his sickness be

function using Chinese medicine. [This mother referred to Chi-

relieved, and his guilty conscience from the past will be cleared.

nese medicine as non-prescribed herbal medicine.]

Adverse effect of other patients' experiences

The fortune-teller explained that my child was named wrong, his

name was conicting with his date of birth and astrology. I have

Other patients' experiences of the adverse effects from

disease had a great impact on parental attitudes towards
cancer treatment when they did not have good understanding of its process, as was expressed by seven parents.
During the child's hospitalization, the parents usually
sought help from other parents whose children had a

196

had her name changed and hope her sickness will be cured.

Lack of empathy from health care professionals

Lack of empathy from health care professionals was also

reported by three participants. Under the stress of a life
threatening disease of the child, parents usually required

1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(1), 193199

Issues and innovations in nursing practice

more detailed information about the disease and the
related treatments. Such information is generally needed
for the parents to prepare themselves to cope with the
disease progression, adverse side-effects and uncertainty
of treatment effects. Parents are grateful to doctors and
nurses for their efforts in caring for their children. However, impatience and lack of clinical and communication
skills amongst health care professionals, could dramatically alter parents' attitudes towards a therapy:
When the diagnosis was conrmed, we asked doctors some
questions about the disease. The attitude of one doctor was
impatient. Once, he even said `you don't have to know so much, it
won't change the fact that your child is dying'. Parents were very
distressed after they heard what the doctor told them. Of course,
not every doctor has this kind of bad attitude.
Whenever they do any examination, such as bone marrow
aspiration, intrathecal injection, they always ask us [parents] to
wait outside. We did not know what's happening to my child.
Each time they did therapy, there were always a lot of doctors in
there. Those therapies or examinations were always performed by
the interns. My child was treated like an experiment specimen by
them to practice their skills.
We do not know how to discuss my child's situation with doctors.
Doctors usually got mad when I asked too many questions. I am
eager to know every detail about my child's progress and need to
get repeated conrmation and assurance if my child has the
possibility to be cured.

Misinterpretation of improved prognostics

The prognosis of a patient may be improved before the

completion of a therapy, but the ultimate effectiveness of
the therapy depends on its completion. However, the
misinterpretation of the improved prognosis by parents
may have led to drop out by three parents:
After some treatment, the symptoms were gone. When he was at
home, he was so happy to play with the other siblings. You
cannot tell the differences between a healthy and a sick child.
Therefore, I thought he was cured already. There was no need to
continue treatment.

DISCUSSION
Although this exploratory study is limited by its small
sample size, it provides insights into the process of
parental decisions on the early termination of a therapy.
Even though nearly half of the parents of the eligible
patients were interviewed, it was impossible for us to
assess the representativeness of the sample because onethird of the parents/patients could not be located. Therefore, extrapolation of our ndings to other patients should
be made with caution.
It was notable that the patients were usually not
informed or involved in the parental decisions. No

Childhood cancer treatment

protocol or guideline has ever been established to consider
consent of the paediatric patients for cancer treatment in
Taiwan. There are still controversies regarding whether a
child should be informed about his/her diagnosis and
involved in making a decision on cancer treatment. A
decision on the continuation or termination of a therapy
apparently depended largely on the parents. However, a
study by Nitschke et al. (1982) showed that informing the
patients could improve communication between family
members and children. Children with advanced cancer
have often overheard the conversation between physicians
and parents and probably have developed an adult-like
conception of disease (Whitt et al. 1979). In this study, we
observed that children were usually perceived by parents
as `too young to understand the disease' or `the guilty
consciences of his/her own past sin' therefore parents
were generally reluctant to discuss the child's illness with
their children. Thus, informing paediatric patients about
their disease and letting them be involved in a decision
process may help to maintain their positive attitudes
towards the disease and the ongoing therapy.
Both patients and their parents may be distressed by
long-lasting medical treatment, painful procedures, severe
side-effects, and uncertainty of disease progress, and thus
have physical and psychosocial care needs during cancer
treatment (Enskar et al. 1997, Kokkonen et al. 1997). Such
needs can be satised by a variety of techniques (Panzarella & Duncan 1993). However, the needs for each child
and family may vary, thus nursing assessment is critical
for identifying them (Walker et al. 1993). Patients and
their parents should be encouraged to express their
feelings and concerns, which will make it possible for
nurses to establish a baseline assessment and plan intervention accordingly. In addition, communication between
parents who encounter similar situations may help them
to relieve their stress and improve their skills to cope with
the progression of disease and side-effects of a therapy
(Cornam 1993, Wright 1993, Enskar et al. 1997). Nurses
might facilitate such communication by introducing parents to each other, or even arranging meetings for them.
A substantial proportion of children (70%) with cancer
had used at least one alternative therapy after they dropped
out from the cancer treatment in this study. This represents
a higher use of alternative therapies than was reported for
children in earlier studies of North American children with
a rate of 87% (Faw et al. 1977) and Australia with a rate of
46% (Sawyer et al. 1994). In these two studies (Faw et al.
1977, Sawyer et al. 1994), parents used the therapies in
addition to conventional medical treatment which is
different from this study where parents dropped out from
the treatment and used alternative therapies only. This
reected the high demand for more effective and less
painful therapies, or the serious doubts which parents had
and their misunderstandings of the present cancer
treatment. However, this also implied that the parents

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C.H. Yeh et al.

were actively seeking ways to cure their children. If such
positive attitudes and hope can be directed to the ongoing
therapy, the completion of a therapy might be ensured, and
the prognoses may be better improved.
Prolonged denial of diagnosis by parents signicantly
contributed to the decisions. This nding is consistent
with those by Barbarin & Chesler (1986), Eden et al. (1993)
and Sussman (1995). Parents tried to search for possible
explanations for disease via religious beliefs, i.e. past sin,
and believed that diseases can be cured or relieved
through ritualistic activities. In addition, the decision on
drop out was made within 3 months of the time of
diagnosis. Although it was mostly parents who made
decisions on drop out, other family members, such as
grandparents, were involved in the decision making. This
indicates the necessity of keeping close relatives or
extended family members informed about the diagnosis
and therapy, and ensuring that the whole family involved
understand and admit the diagnosis.
Patients may be re-hospitalized after drop out. Parents
usually had a considerable emotional burden of sadness
and guilt in such situations. It is important for health care
professionals to understand their psychology and devastation when seeking for alternative therapies, and to
encourage them to complete the remaining therapy.
Religious belief can either obstruct or facilitate the
completion of a therapy (Hickey 1986, Nowotny 1986).
The explanation of disease causation from the perspective
of Taoism and Buddhism, the religions of the majority of
parents, is past sin as a present obstacle; altering a child's
fate based on the religious belief may cure a disease.
Informed discussion about their religious beliefs may help
the parents strengthen their hope and encourage them to
complete cancer treatment.
Other factors related to parental decisions included the
child's delay and difculties in academic progress, isolation from siblings, and parental neglect of the needs of
another healthy child or children. Only two of the 12
school age patients continued schooling. This nding
agrees with those of Koocher & O'Malley (1981) and Kazak
et al. (1994). The primary caregiver, usually the mother,
had neglected other siblings' needs during hospitalization.
These ndings, similar to those of Chen & Chao (1991),
suggest that a mechanism is badly needed to provide
adequate support for the parents and patients from their
family, the school and the hospital, which would allow
them better to adjust themselves for school work and
social relationships during cancer treatment.
The results of this study suggest that health care
professionals should make efforts to: encourage parents
to accept diagnoses; facilitate open communication
between parents and older children regarding the disease
and related treatments; educate parents in disease prognostics after treatment; and provide a caring atmosphere
for parents and patients. Nursing care should be focused

198

primarily on providing for the psychosocial needs of

patients and their parents to ensure the completion of a
treatment. Health care professionals should have
non-discriminative and positive attitudes towards various
coping strategies of parents and provide necessary
assistance accordingly.

Acknowledgements
This paper was funded by Chang-Gung University, Taiwan, Republic of China (grant number: CMRP765). We
would like to thank the participants in this study. We
would also like to express our deep appreciation to Mr
Wenjun Li for his many helpful comments and suggestions in the preparation of this manuscript.

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