Dynamic Coping Behaviors and Process of Parental Response to

Child’s Cancer
Chao-Hsing Yeh

The purpose of this study was to identify a theoretical construct for the process that Taiwanese
parents go through during their child’s illness with cancer. Grounded theory methodology was
used to gain insight into the parental responses to their child’s devastating illness. One core
category with five distinct components emerged from the data as parents developed their ability
to endure the distress of caring for a child with cancer. “Coming to terms” was the core category.
The five distinct components were as follows: confrontation of reality, management of treatments,
cognitive/affective shifting, recognition of the situation, and adjusting appropriately. For the
parents of those children whose illness proceeded with few complications and those children who
had been successfully treated, these components had a sequential pattern. However, for parents of
those children whose illnesses were more complicated, changes in clinical status occurred in rapid
succession, or simultaneously. Emotional responses of these parents were dynamic; the stages
were less obvious and not sequential.
© 2003 Elsevier Inc. All rights reserved.

C ARING FOR A CHILD with cancer is a

psychologically and behaviorally complex
process for parents, involving various aspects of
family life (Grootenhuis & Last, 1997). Although
recent advances in chemotherapy for childhood
cancer have dramatically improved the survival
rate of patients (Lai, 1996), the effectiveness of a
medical treatment depends not only on the treat-
ment itself but also on parental cooperation and
care during and after treatment (Yeh, Tsai, & Lin,
1998). Successful parental involvement in their
child’s treatment relies on their understanding the
diagnosis and treatment and their psychological
and emotional preparation (Conatser, 1986). The
long duration, painfulness, and severe side effects
of treatment and the uncertainty of disease progres-
sion often result in tremendous stresses to parents
(Yeh, Lin, Tsai, Lai, & Ku, 1999). Counseling by
health care professionals is usually needed to over-
come such stresses and to ensure the completion of
treatment (Chen, Martinson, Chao, Lai, & Gau,
1994).
Little is known about Taiwanese parents’ emo-
tional response to caring for a child with cancer.
Leininger (1991) points out the importance of dis-
covering a patient’s worldview and cultural values
to establish holistic nursing practices. As immi-
grants increasingly move around the world (Stell-
man & Wang, 1994), they become a culturally
diverse clientele for health care professionals who
have to be aware of the existing cultural differ-
ences in health care values, patterns, and practices,
particularly between Western and Eastern cultures.
Parental response to childhood cancer is a psycho-
logically and behaviorally complex process involv-
ing various aspects of family life. Identified psy-
chosocial factors related to this complexity include
perceived stresses and coping strategies (Chin,
1986; Huang, Chen, & Chao, 1996; Lee, Tseng, &
Yeh, 1995; Tseng, 1993), adverse effects and
symptoms of patients (Chin, 1986), grief reactions
and coping behaviors after children with cancer
have died (Lee, 1989), behavioral responses of
healthy siblings (Wang & Martinson, 1996), and
financial burdens (Chin, 1986). Nevertheless, the
interrelationships between parental responses and
their time sequences remain to be understood. This
Chao-Hsing Yeh, RN, PhD, Associate Professor, Graduate
Institute of Nursing Science, Chang Gung University, Tao-Yuen,
Taiwan.
Supported by a grant to Dr. Yeh from Chang Gung University,
Taiwan, Republic of China (CMRP865).
Address reprint requests to Chao-Hsing Yeh, RN, PhD,
Chang Gung University, Graduate Institute of Nursing Science,
259 Wen-Hwa 1 Rd, Kwei-San, Tao-Yuen, Taiwan. E-mail:
cyeh@mail.cgu.edu.tw
© 2003 Elsevier Inc. All rights reserved.
0897-1897/03/1604-0005$30.00/0
doi:10.1053/S0897-1897(03)00054-5

Applied Nursing Research, Vol. 16, No. 4 (November), 2003: pp 245-255 245
246
study represents an initial effort to address this
question.
Parental response to childhood can-
cer is a psychologically and behavior-
ally complex process involving vari-
ous aspects of family life.
METHOD
Patient Population and Participants
Eligible participants of this study were primary
caregivers of children diagnosed with cancer, un-
der 18 years old at the time of diagnosis, who had
stayed on the pediatric oncology ward of a Chil-
dren’s hospital, Taiwan. According to Yeh and col-
leagues (2000), participants with children at differ-
ent stages of illness had different responses. For
example, a parent of a newly diagnosed patient
needs to deal with a series of treatments, which is
different from that for a patient who is diagnosed in
relapse. Thus, participants were purposively iden-
tified according to the stage of their child’s illness.
In total, 32 parents of children at all stages of the
illness participated. Initially, 17 patients were
newly diagnosed and under treatment but without
relapses, 10 were under treatment during relapse,
and five were at terminal stage. However, although
the longitudinal data collection was ongoing, five
patients from the newly diagnosed group pro-
gressed to relapse, and four at relapse progressed to
terminal stage. Patients included 21 males and 11
females, with an average age of 8.5 years (range ⫽
0.8 to 15 years). Their cancer diagnoses included
leukemia (n ⫽ 23, 71.9%), lymphoma (n ⫽ 4,
12.5%), and others (n ⫽ 5, 15.6%). Of the 32
parents interviewed, 26 were mothers, with an av-
erage age of 37.7 years (range ⫽ 28 to 48 years)
and average education of 9.6 years (range ⫽ 6 to
16 years); six were fathers, with an average age of
41.0 years (range ⫽ 27 to 70 years) and average
education of 11.7 years (range ⫽ 9 to 16 years).
Procedure
Approval for studying human participants was
obtained from the hospital before the study, and
established procedures for protecting confidential-
CHAO-HSING YEH
ity were strictly followed. Data were collected
between October 1997 and April 1999. Potential
participants were parents whose child had stayed at
the hospital for oncology treatment. They were
contacted about their willingness to participate in
the study. After parents had voluntarily consented,
they were sequentially scheduled and interviewed
face to face at the hospital wards by one of three
trained interviewers. An interactive semi-struc-
tured interview guide was used. Parents of de-
ceased patients were interviewed over the tele-
phone. Verbal consent was obtained and tape
recorded at the beginning of each interview. All
participants under observation were informed
when observation and data collection were in
progress. Identification of participants on the tape
or written verbatim transcript was removed imme-
diately after each interview, and all materials were
stored in a locked office. Tapes were destroyed
after the transcript verbatim was completed.
Data Collection
Data collection consisted of three phases. Ini-
tially, three interviewers were jointly trained by the
researcher and participated in role play, which en-
sured the consistency of interviewers’ techniques
and skills. Two interviews were conducted to refine
the interview guide and procedure and to explore
participants’ views after the child was diagnosed.
In the second phase, 26 parents with children at
all stages of the illness (i.e., diagnosis through
death) were chosen to maximize the variation of
different stages of patient illness. Three focus
group interviews (three or four people per group)
were held for parents who had been individually
interviewed.
In the final phase, three participants who had
been interviewed and one new participant were
interviewed again to achieve theoretical saturation
of the core category and to conduct member
checks. Open-ended and multiple tape-recorded in-
terviews were conducted with each participant
(one to four interviews, lasting from 50 to 120
minutes, depending on the content of conversa-
tion). In addition to individual interviews, data
were also collected from daylong on-site observa-
tions, from early morning to late evening, to ob-
serve the interaction patterns between parents and
patients. Interactions between parents and medical
practitioners were also noted. Process recordings
were completed within 24 hours after the observa-
PARENTAL RESPONSE TO CHILD’S CANCER
tions were made. In addition, data were also col-
lected from tape-recorded focus group discussions
during patient hospitalization, review of medical
charts, nurses’ notes, and researchers’ reflexive
journals.
Data Analysis
As the data were received and transcribed, a
constant comparative method (Glaser & Strauss,
1967) was used for data analysis. Open coding
without preconceived codes was used initially.
Then codes were constantly compared with each
other, later codes with category, and category with
category (Hutchinson, 1986; Strauss & Corbin,
1990). Data were progressively analyzed through-
out the procedure of data collection. During the
first interview with parents, participants’ percep-
tion of their child’s illness and caregiving experi-
ences were approached broadly by asking general
questions, for example, how do you feel about
caring for the sick child? Then the interviewers
gradually moved to those aspects more directly
related to parental coping responses. “Coming to
terms” emerged as the core category in the early
interviews. The initial aspect of this category was
endurance: parents endured when they were first
informed of the diagnosis or a medical event.
These medical events left no choice for parents
other than to bravely confront the cancer diagnosis
and consequent intensive treatments. “Coming to
terms” emerged as parents developed their ability
to endure the distress of caring for a child with
cancer. As the core category emerged, additional
interview questions focusing on caregiving for
their sick child were formulated and asked.
After 28 interviews were completed, no new
categories emerged from the raw data. Sampling
was stopped. After the core category emerged,
theoretical sampling with selective coding was
used to identify the relationship between each con-
cept. Memo writing was used to record ideas and
brainstorming about the emerging theory as a syn-
ergistic process. To increase theoretical sensitivity,
dictionaries and literature from different disci-
plines regarding emotional responses of parents in
caregiving situations were referenced.
Criteria outlined by Lincoln and Guba (1985)
were followed to address trustworthiness of the
data. Prolonged engagement with data and peer
debriefing were used. The emerging analysis was
discussed periodically with faculty members and
247
students in a year-long, weekly advanced pediatric
nursing seminar group, which assessed plausibility.
Periodic team discussions kept interviewers well
informed about the progress of interviews and new
findings from the data analysis. The emerging anal-
ysis was discussed with participants during mem-
ber checks. Modifications were made according to
suggestions from participants. In this study, only
findings on the coping responses of caregivers of a
child with cancer are presented.
FINDINGS
“Coming to terms” is the core construct of the
parental reaction to caring for a child with cancer
over the illness trajectory. Endurance was first ob-
served in parents when the diagnosis was con-
firmed. It refers to the parents’ ability to care for
their child in the face of tremendous distress. This
multifaceted, dynamic process could be elicited by
the diagnosis of an illness or by a change in the
child’s clinical status. Five distinct components of
the coping process of caregiving for the sick child
emerged: (1) confrontation of reality, (2) manage-
ment of treatments, (3) cognitive/affective shifting,
(4) recognition of the situation, and (5) adjusting
appropriately. For most of the parents, a change in
their child’s clinical status could occur any time
before the previous one(s) had ended, leading them
to deal with multiple events at the same time.
“Coming to terms” was a consequence of parental
coping with caring for a child with cancer. Parents
tried to accept the reality of the illness and deal
with the possible consequences.
“Coming to terms” is the core con-
struct of the parental reaction to car-
ing for a child with cancer over the
illness trajectory.
The term “component” was chosen because pa-
rental responses moved back and forth in a non-
linear fashion, whereas multiple clinical events
occurred at a time. The coping process of parents
caring for a sick child would go through multiple
components simultaneously if multiple clinical sta-
tuses occurred in a very short period. In such
circumstances, parental coping status seemed to
248
switch from component to component, which im-
plied a dynamic interplay between these compo-
nents—a phenomenon that may be described as
“coming to terms.” Descriptions of each compo-
nent are presented later.
Confrontation of Reality
Confronting reality was the initial response of
parents to the identification of their child’s condi-
tion. This component began with diagnosis, a
change in clinical status or death, and marked the
starting point of the parents’ emotional fluctuations
and coping process. At this stage, two types of
responses were observed (i.e., struggle with clini-
cal status and self-devaluation). These responses
were not mutually exclusive; rather, they were two
dependent parts of a psychosocial and emotional
downfall.
When informed of (or observing) a different
clinical status, parents were often traumatized by
initial shock, felt overwhelming despair, denied the
diagnosis, had safety concerns, doubted the cura-
tive rate of a treatment, and feared their child’s
death. These responses did not necessarily occur in
sequence. At first, parents tried to search for exter-
nal explanations. They were reluctant to admit the
diagnosis, explored the possibility of misdiagnosis,
and/or became angry with health care professionals
for the “late” diagnosis when a diagnosis was con-
firmed. For example, one parent stated: “...at the
beginning, she had fever for several days. The
doctor diagnosed her as having flu and refused to
do an advanced examination...We were very angry
that the doctor failed to diagnose our child’s situ-
ation.”
Parents would also search for “internal” expla-
nations and start to devalue themselves. They at-
tributed their child’s cancer to their own “fault,”
e.g., negligence in caring, leaving the responsibil-
ity for raising the child to grandparents or a baby-
sitter, genetic heritage, or an unhealthy lifestyle
(e.g., cigarette smoking and alcohol consumption).
Blame from family members, particularly from
mothers-in-law and fathers-in-law, also contributed
to parents’ self-devaluation.
In an observation between a mother-in-law and a
participant, the mother-in-law blamed the child’s
illness on the mother: “It is your responsibility.
How could you be a full time mother caring for a
CHAO-HSING YEH
child and cause him to have such an illness? Where
is your consideration for your child’s ancestor?”
The mother was sobbing alone at the end of her
child’s bedside.
In addition, religious belief played an important
role in explaining illness. A common definition of
disease from Chinese tradition is based on retribu-
tion for past sin or God’s punishment. For exam-
ple, one mother stated: “It was my past sin that
caused this obstacle for my child. Life is cyclical—
what I did during the past affects my own child.”
A common definition of disease from
Chinese tradition is based on retribu-
tion for past sin or God’s punishment.
Management of Treatments
This component describes efforts by parents to
manage treatments, with caring for patients as an
underlying goal. Parents tried to regulate their be-
haviours and attitudes by taking control and keep-
ing optimistic.
Twenty-eight parents reported that, after they
had accepted the diagnosis and when treatment
was in progress, they eventually learned more
medical-related knowledge and information re-
garding both standard and alternative treatments
(such as Chinese herbal medicine and QiGong
therapy). (QiGong therapy is an Chinese ancient
method of using one’s breath and movement in a
slow gentle manner that offers preventive mea-
sures against disease). Such knowledge and infor-
mation, although anecdotal, might have helped
parents to control the situation, balance their needs,
and reconstruct their life patterns. However, such
taking control sometimes resulted in dilemmas for
both medical practitioners and parents themselves.
For example, one mother said, “The doctor told me
that I didn’t have to know so much; it wouldn’t
change the fact that my child was dying.” Another
example is that alternative practitioners generally
request their patients to withdraw from treatments
of western medicine before starting a treatment in
herbal medicine or QiGong therapy.
Parents sought support from various sources,
i.e., friends, close relatives, religion, experienced
PARENTAL RESPONSE TO CHILD’S CANCER
others, and authoritative others (elders). They per-
ceived that such efforts would validate their choice
of the best treatment for their child. Such efforts,
however, often excluded the participation of their
oncologists. Of the 32 participants, only one parent
discussed alternative treatment with her doctor and
abandoned her efforts after having perceived a
negative attitude from the doctor. Parents often
faced a conflict between choosing a “better” treat-
ment without definitive information regarding the
outcome and trade-offs between Chinese and West-
ern medicine. One mother stated, “The complica-
tions from side effects are so severe. . .she did not
eat anything for the past two weeks because of her
oral ulcer. I heard of many successful cases from
parents who decided to use folk medicine that
cured their children. I consulted the master [who
prescribed the folk medicine] and he verified my
doubts. I never discussed this with my husband and
he left the decision making to me. The doctor only
told me the probability of curing my child’s illness,
however, the master of herbal medicine gave me
the successful cases who were cured. It was very
difficult for me to choose the best treatment for my
child, watching my child suffer those severe side
effects and endure the endless treatment with no
guarantee for cure. I dropped out of the treatment
to have my child take the herbal medicine.” (Pa-
tient was withdrawn from standard treatment for 6
months and was re-hospitalized because of high
fever).
The function of parents in the family often
changed dramatically when caring for a sick
child. While struggling to preserve their child’s
life, parents prioritized the needs of their sick
child while sacrificing those of other family
members. The attention of parents was so fo-
cused on learning physiologic responses of the
child during treatment, monitoring his/her health
status, and meeting his/her psychosocial needs
that they ignored the needs of healthy siblings,
other family members, as well as their own mar-
ital relationship. As the disease progressed, the
high cost of medicine and treatment (particularly
those not covered by health insurance) some-
times resulted in excessive financial burdens to
the family, as well as increasing expenditure on
toys, supplemental nutrition food (e.g., ginseng,
ganoderma lucidum, and propolis), the child’s
249
favorite foods, transport to hospital, and unem-
ployment of the primary caregiver.
While struggling to preserve their
child’s life, parents prioritized the
needs of their sick child while sacri-
ficing those of other family members.
“Keeping optimistic” reflected parents’ selective
awareness in looking to the bright side of the future
and their motivation to imagine the best. This
component represented parental efforts to face re-
ality with optimism and to selectively choose to
assume and believe that their child would be cured
and eventually have a normal life. Belief in doing
the best for their child and selective realization of
disease progression might assist parents in keeping
up their hope, increasing their strength and that of
their sick child, balancing their needs, and endur-
ing the threat of uncertainty. However, parents
were sometimes so optimistic that they ignored the
warning signs of physiologic responses and re-
jected advice from health care professionals, as
shown in the following excerpt: “. . .people have to
keep their hope, even if there’s only a little chance.
This might be his only chance. We did what we had
to do and it brought us hope although the process
was painful. We did not know for sure, however, if
we might be lucky in having a possibility of curing
his illness.”
Cognitive/Affective Shifting
Through the whole process of diagnosis and
treatment, parents sometimes exhibited continuous
cognitive shifts between uncertainty and assurance.
Although the survival rate of pediatric oncology
patients has improved, parents have to ceaselessly
adjust themselves to unpredictable side effects,
complications and recurrences, financial burdens,
and emotional fluctuations of both the child and
themselves. Waves of feelings, positive or nega-
tive, were not mutually exclusive, and shifts be-
tween them were rapid. Some parents tended to
passively avoid stressors; they would ignore warn-
ing signs (e.g., relapse) and consequences, unin-
tentionally and sometimes intentionally, by not
telling the truth to the child or withdrawing from
250
treatment. Some parents avoided discussing prob-
lems because such discussion could be interpreted
as lack of faith in God’s efforts to cure the disease
and an admission of reality. One parent stated, “His
doctor told me that my child had only a couple of
months to live. If this were really so, we would
decide to withdraw from cancer treatment and take
him wherever he wanted to go. We would like
him to have a really good time during his last
days. . .however, we were reluctant to make such a
decision. There might be some miracle if he con-
tinued with the treatment.”
In contrast, others chose to face the threat and
related outcomes by revealing the truth to the child,
actively managing side effects and completing
treatment. One parent confirmed these thoughts,
“. . .we told her younger [healthy] sister that her
sister was sick and might leave us. We did not
know how long we could keep her. We would do
our best to let her have a good time. . .I told my
child, ‘You have cancer and have to be treated. The
treatments might be very painful. However, we all
will stay together and go through this with you. We
will pray together and God will give us strength to
overcome our difficulties.’”
Recognition of the Situation
After having accepted the diagnosis and starting
to cope with the cancer, parents began to assess the
cause of cancer and its impact on their life by
searching for meaning and anticipating grief.
Searching for the meaning of life and illness from
spiritual beliefs was one way for many parents to
live with their child’s cancer. Once the cancer
diagnosis was unavoidably confirmed, some par-
ents turned to Chinese fortune tellers. For example,
12 parents asked astrologists to interpret their div-
ination of “Ba-zi,” a kind of Chinese astrology that
is believed to be helpful in overcoming difficulties.
Similarly, parents might perceive illness as the
child’s fate and believe that the outcome of the
cancer could be changed by performing certain
customs and rituals. They tried to cope with cancer
after having “recognized” illness as their child’s
destiny—“if that is what life should be, then we
will learn to live with it.” This selective recogni-
tion of life’s meaning had a positive impact on
parents, i.e., more medically compliant behavior
and hope for a cure of illness. For example, one
parent stated, “We tried to find explanations for
why my kid had cancer. Why could this possibly
CHAO-HSING YEH
happen to my child? Most of my friends told me
that was my child’s fate. Individuals have to live
with their destiny...my friends and grandparents
prayed for my child when they went to the
temple...my husband also persuaded me that was
the child’s fate. God had arranged everything. We
could only do whatever we could and leave the rest
to God.”
Anticipating grief was the usual parental reac-
tion to childhood cancer. In general, parents si-
lently prepared themselves and were aware of the
distress symptoms, the possibility of relapses, re-
currences, or eventual death. They learned this
possibility through their increasing contacts with
medical practitioners and other parents. Chaotic
emotional responses appeared when they felt short
of strength to relieve distress symptoms or encoun-
tered relapse or death. A typical response described
by a nurse was as follows: “Typically, the patient’s
family was very upset when a doctor informed
them of the critical condition. They tried to prepare
for the funeral, for example, to arrange a burial
place, and prepare necessary clothes and toys for
the child. However, when the time came, the
mother totally lost control and cried out while
holding the nurses.”
Adjusting Appropriately
The progression of the disease and its treatment
forced parents to constantly learn how to live with
their child’s cancer. They had to adapt daily to
changing situations and to master their emotional
reactions. They had to recognize and assess the
changing situations (i.e., relapses, recurrences, and
death) and adjust their lifestyle or life patterns to
help their child survive while being aware of his/
her possible death. Living with such dynamic un-
certainty, some parents were often desperately in
need of reassurance and “concrete answers.” Con-
stant reassurance of when the treatment would end
and its ultimate outcome was necessary for parents
to commit to completing a treatment. Encouraging
answers from health care professionals, positive
results from clinical examinations, and availability
of alternative therapies were the key components
for parents to believe in the ultimate ending of their
child’s cancer. The following excerpt illustrates
such behaviors: “We decided to keep fighting until
he is cured or dead. We will do our best no matter
how much we have to pay. If he survives the
treatments, we all will thank God for helping us. If
PARENTAL RESPONSE TO CHILD’S CANCER
not, we will let him have the best time we can give
him before he leaves us.”
The progression of the disease and its
treatment forced parents to constantly
learn how to live with their child’s
cancer.
Coming to Terms as a Dynamic Coping Process
The coping process of parents of a child with
cancer consisted of five distinct components as
stated earlier. For the parents of those patients with
a less complicated disease progression or who had
been successfully treated, these components had a
sequential pattern, as illustrated by the following
excerpt: “When we were informed of the diagno-
sis, we were shocked. We did not believe the
diagnosis and we tried to confirm it from three
doctors at different hospitals. Then the treatment
started, and we gradually learned relevant medical
knowledge, and became more and more experi-
enced and confident in taking care of our sick son.
Eventually, we got used to going back and forth
between hospital and home, monitoring side ef-
fects and watching physical responses. We prayed
for his cancer to be cured and cooperated with his
doctors, and his siblings got used to it, too. We had
developed a working sheet to monitor his physical
situation and learned how to manage it. . .We al-
ways wondered, however, if this really was his
destiny. Was there anything we could do to make
him healthier? When we woke up in the middle of
the night and saw him still breathing, we were
happy. We had learned to live with this. A month
ago, we completed the treatment protocol and
come back regularly for the clinic follow-up. We
changed our life style in order to meet his needs,
i.e., by reducing outdoor activities and improving
his nutritional needs.”
However, related changes in clinical status gen-
erally occurred one after another in rapid succes-
sion after the cancer diagnosis was confirmed.
Emotional responses of parents were dynamic, of-
ten exhibiting components in a less obvious se-
quential pattern. These components, responding
either to the same or different clinical statuses,
251
affected each other in a more complicated manner.
This phenomenon might give nurses a false im-
pression that some parents were swinging between
emotional states without “sequential patterns” and
that their coping behaviors were illogical and un-
controllable. Such emotional dynamics made coun-
seling work much harder as properly identifying
parents’ emotional status was not an easy task. A
typical response is seen in the following excerpt:
“We just learned and adjusted our life style to
accommodate his cancer treatments, e.g., schedul-
ing hospitalizations, managing side effects, meet-
ing his nutritional needs, making arrangements for
his sisters. . .we followed all the schedules and
completed the treatments. . .A week later, he had
relapsed right after he completed the protocol. My
child asked, Why should I come back to hospital
again? I have been a good boy. I have been so
cooperative. . .It’s not fair that you took me back.
His doctor informed me that my child was at the
terminal stage. . .How and what should I tell my
child? What could I do?” (Patient was 11 years old
and died 2 weeks later after the last interview.)
Parental responses would vary according to clin-
ical status, and parents expressed their strong de-
sire for assistance from nurses in managing pa-
tients’ complications, although such desires were
usually expressed as formal requests. They hesi-
tated to raise this issue because such emotional
responses were controversial and appeared to be
“illogical,” for example: “The clinical nurse spe-
cialist informed me of the possible complications
and taught me relevant skills to manage them be-
fore the treatment. I thought I knew how to handle
the situation and could manage the crisis. How-
ever, when [the complications] came, I did not
know how to manage them. . .In most cases, we
had to take him to the emergency room and the
doctors asked us to go back home and rest because
such responses were normal after treatment. I be-
came over-sensitive to everything. . .When he
started to feel pain [at terminal stage], his doctor
gave orders to administer pain control, however, I
had no idea how to do it, either because of being
afraid of addiction or his suffering. . .I really did
not know if this was the end. He might be cured.
What would happen if he survived and was ad-
dicted to an analgesic drug. . .or, if it was really the
last part of his life?..I made him suffer so much
252
pain. . .I did not know how to discuss my contro-
versial thoughts with his doctors.”
DISCUSSION
“Coming to terms” emerged from the data to
represent the Taiwanese parental coping process of
caring for a child with cancer. This process is
dynamic, multifaceted, rapidly changing, and on-
going. It consists of parental coping patterns and
ways of handling stress. Similar to previous studies
(Enskär, Carlsson, Golsäter, Hamrin, & Kreuger,
1997; Grootenhuis & Last, 1997; Hinds et al.,
1996; Sussman, 1995), parents experienced the
most emotional distress when a cancer diagnosis or
a change in a child’s condition was revealed to
them. In this study, parents went through multiple
stages, simultaneously switching from component
to component in a non-sequential fashion. Thus,
nursing interventions should focus on parents’ re-
actions or possible reactions to any changes in their
child’s condition.
Parental cognitive and behavioral patterns in the
study were constantly changing with the appraisals
and reappraisals of the patient’s situation. When
the child’s clinical status did not change frequently
in a short period, some parental emotional re-
sponses occurred sequentially. However, patients
with few and separated complications were not
common. Most parents had to deal with multiple
events at the same time. These findings are com-
parable to those of western studies (Cohen, 1993;
Hinds et al., 1996; Grootenhuis & Last, 1997; Roth
& Cohen, 1986; Van Dongen-Melman et al., 1995).
This study, however, revealed many distinct cul-
tural beliefs among Taiwanese parents. One differ-
ence from previous studies is the important role
played by religious beliefs in parental coping in
this industrialized society. Taiwanese parents
sometimes denied their child’s diagnosis and
searched for alternative explanations of illness
from spiritual and religious beliefs. Martinson and
colleagues (1999) have documented that this kind
of justification of illness is not common in white
families. Neuman (1995) has noted that spirituality
can be viewed as a continuum from complete un-
awareness or denial to a consciously developed,
high level of spiritual understanding. Religious
practices of parents in this study, such as perform-
ing rituals and praying to rectify past sin or search-
ing for alternative therapies, were similar to those
reported as problem-focused coping by Folkman
CHAO-HSING YEH
and Lazarus (1988). At the same time, parents
realized that such behaviors were limited to satis-
fying their psychosocial expectation for curing the
illness but not actually curing. However, parents
who were more supernaturally oriented tended to
believe the illness was because of their past sin,
resulting in self-devaluation caused by blame from
others (for example, from mothers- and fathers-in-
law) as well as self. In addition to being less
outspoken about emotional distress than Western
parents (Leavitt et al., 1999), Taiwanese parents
also tend to express distress through somatic symp-
toms (Martinson et al., 1999).
Taiwanese parents sometimes denied
their child’s diagnosis and searched
for alternative explanations of illness
from spiritual and religious beliefs.
To manage treatments, two levels of parental
control, beginning and mastery, were observed in
this study. Control is defined as evidence of one’s
mastery over and confidence in the environment or
an event (Lazarus & Folkman, 1994). Beginning
control occurred while parents made intensive and
urgent efforts to control their child’s situation, e.g.,
their efforts at the stage of managing treatments. At
this stage, parents tried to observe related re-
sponses of the child and reported them to health
care professionals. Advanced control was observed
as parents learned more about their child’s illness
and became perceived experts, e.g. at the stage of
appropriate adjustment. At this level, parents had
learned the majority of rationales regarding medi-
cal decisions. Overcompensating control occurred
when parents insisted on their medical judgments,
even when these contradicted those of medical
practitioners. This behavior had negative conse-
quences on medical decision making, i.e., asking
for unnecessary medical management or avoiding
discussion of the child’s situation with medical
practitioners, which resulted in less medical com-
pliance. Similar phenomena were observed by
Lazarus (1991). Properly establishing parents’
sense of control was critical to prevent overcom-
pensating behavior and to improve compliance. In
addition, parental strategies for caregiving con-
PARENTAL RESPONSE TO CHILD’S CANCER
sisted mostly of asking the child to cooperate with
medical treatments. This behavior differed from
Western parents who tend to psychologically pre-
pare their child for painful procedures and deal
with their child’s refusal and resistance (e.g., by
explaining everything; Martinson et al., 1999).
Thus, an early nursing intervention should estab-
lish parental skill in emotionally preparing their
child.
Properly establishing parents’ sense
of control was critical to prevent over-
compensating behavior and to im-
prove compliance.
Parents intensely involved in monitoring their
child’s responses often selectively perceived the
child’s situation optimistically to gain strength to
face the disease. These coping skills are consistent
with the findings of Hinds and colleagues (1996)
and those of a study of parents with chronically ill
or disabled children (Austin & McDermott, 1988).
Parents who tended to remain optimistic were
more likely to have better medical compliance than
those perceived to gain mastery by excessive con-
trol. Overly optimistic thoughts, however, were
observed and usually gave parents unrealistic hope
when their child was diagnosed at terminal stage,
leading to unavoidable distress and poor adjust-
ment.
Parents who experienced cognitive/affective
shifts between uncertainty and assurance expressed
desires for psychosocial/emotional balancing.
They developed avoiding and approaching behav-
iors (Roth & Cohen, 1986). Under such stressful
circumstances, some parents imagined possible
consequences based on their perceptions and de-
veloped their own scenarios. Such imaginings were
influenced by family members, friends, and expe-
rienced others. For example, the successful expe-
rience of other parents gave them hope. Thus, hope
might result in more cooperation with medical
practitioners. This finding is similar to that of
Hinds et al. (1996). However, that study also
showed that too-positive imagining might also
have severe negative consequences on patients be-
cause parents usually imagined facts based on their
253
own needs rather than the child’s. Evidence in this
study for this assessment is that of the parent’s
asking the sick child to become a vegetarian.
Consistent with other studies (Groothenhuis &
Last, 1997; Perry 1990; Sodestrom & Martinson
1987), Taiwanese parents of children with cancer
strongly influenced each other, particularly with
regard to issues of trust, willingness to share feel-
ings and experiences, openness in discussing prob-
lems and solutions, valuing each other’s opinion,
and providing advice. In this study, parents were
negatively influenced by the relapse or death of
other children, sometimes leading parents to recon-
sider the meaning and necessity of continuing a
treatment. For example, some decided to drop out
from a treatment after learning the experiences of
those who had dropped out from treatments and
still had no visible physical problems. These find-
ings may also be explained by parents in this study
seldom getting support from health care profes-
sionals, which is different from evidence that other
Taiwanese parents of sick children find a wide
range of social and community support (Martinson
et al., 1999).
Consistent with previous studies (Yeh et al.,
1998, 2000), parents decided on the better treat-
ment (standard or alternative treatments) without
consulting their oncologist. Without an effective
dialogue between medical practitioners and parents
regarding the need to remain hopeful, parents de-
cided to terminate or delay treatment. Such choices
can cause significant morbidity or mortality (Cook
& Baisden, 1986, Yeh et al., 1999). Health care
professionals can help parents by informing them
of the advantages and disadvantages of alternative
medicine (Lin, Tseng, & Yeh, 1995; Wen, 1998),
by valuing parents’ beliefs within their cultural
experiences and worldview, and by identifying pa-
rental thoughts or behaviors that might risk their
child’s health (McCubbin, Thompson, Thompson,
McCubbin, & Kaston, 1993). If parents insist on
choosing alternative therapy, oncologists should
suggest that parents adhere to conventional treat-
ments until there is convincing scientific evidence
of the effectiveness of other treatments.
In the present study, some parents also partici-
pated in focus groups. The interview process and
in-depth data collected during the sharing of expe-
riences has been shown to lead to a better adjust-
ment of parents (Shapiro & Shumaker, 1987).
254
However, fathers and mothers in this study ex-
pressed themselves differently and sometimes ex-
hibited protective behaviors toward each other, i.e.,
avoiding the expression concern to reduce the
spouse’s burden. Mothers, usually the primary
caregivers in our study, seemed to bear the greatest
burden of caring for the sick child. Fathers usually
reacted more defensively and assertively. Fathers
and mothers often had different perspectives about
their concerns. Because only a small number of
fathers were interviewed, more data are needed to
show the response process of fathers of children
with cancer.
In summary, this qualitative study provided a
rich context and a culturally sensitive perspective
of parental responses embedded in Chinese culture
and religious beliefs. Findings suggest that nurses
should focus on parents’ reactions or possible re-
actions to their child’s illness and treatment. Future
studies should evaluate interventions based on the
goals of nursing actions to attain or maintain the
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