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Supportive Care Needs of Parents of Children With
Cancer: Transition From Diagnosis to Treatment
Laura M.J. Kerr, RN, MSc, CON(C), Margaret B. Harrison, RN, PhD,
Jennifer Medves, RN, PhD, and Joan Tranmer, RN, PhD
Key Points . . .
Purpose/Objectives: To analyze research related to the pediatric on-
cology population supportive care needs from diagnosis to treatment.
Data Sources: Articles published from 1992­2002.
This review on supportive care needs provides a detailed syn-
Data Synthesis: 49 studies were included. All six categories of the
oposis of parental needs identified in the research through 2002.
Supportive Care Needs Framework were found, with most studies ad-
dressing one to three of the need categories. Informational (88%) and
The six categories of supportive care needs identified in the
emotional (84%) needs were identified most frequently.
framework are discussed within the literature, but no study was
Conclusions: No one study examined the entire range and types of
designed to examine the constellation of supportive care needs.
supportive care needs from diagnosis to treatment. This knowledge is
A prospective assessment of needs from the perspective of
key to planning appropriate care and services. Future research should be
parents and providers would be the next logical step of inquiry
directed at understanding the full constellation of needs encountered by
to assist in the planning and provision of quality care from
parents during this time. Further refinement of the Supportive Care Needs
diagnosis to treatment.
Framework is required to fully define the categories of need.
Implications for Nursing: Although more research is required, sup-
portive care that focuses on informational and emotional support appears
to be most important from diagnosis to treatment. Using a conceptual
framework such as the Supportive Care Needs Framework provides a
cancer (Clarke-Steffen, 1993; Enskar et al., 1997b; Hoekstra-
methodology for planning care based on needs.
Weebers et al., 2001; Martinson et al., 1993; McGrath, 2001a,
2001b; Shields et al.; Williams).
P
Supportive Care
arents dealing with childhood cancer face many dif-
ferent stressors throughout the course of their child's
Supportive care has been defined as a benefit to patients
illness. The use of coping strategies such as social
and their families by encouraging individuals to live as well
support, communication, and search for meaning has been
as possible (Tebbit, 2001). In a comprehensive Canadian
described (Cayse, 1994; Clarke-Steffen, 1993, 1997; Corn-
model, six categories of need crossing the continuum of care
man, 1993; Dahlquist, Czyzewski, & Jones, 1996; Enskar,
were described. For the purpose of this review, the defini-
Carlsson, Golsater, Hamrin, & Kreuger, 1997a; Goldbeck,
tion of supportive care within the Supportive Care Needs
2001; Hoekstra-Weebers, Jaspers, Kamps, & Klip, 1998;
Framework (SCNF) of the Ontario Cancer Treatment and
LaMontagne, Wells, Hepworth, Johnson, & Manes, 1999;
Larson, Wittrock, & Sandgren, 1994; Martinson, Xiao-Yin,
& Yi-Hua, 1993; McGrath, 2001b; Mu et al., 2001; Noojin,
Causey, Gros, Bertolone, & Carter, 1999; Shapiro, Perez, &
Laura M.J. Kerr, RN, MSc, CON(C), is the coordinator for the pe-
Warden, 1998; Shields et al., 1995; Sloper, 1996; Sterken,
diatric oncology program at Kingston General Hospital in Canada;
1996; Williams, 1992). The ability for parents of children
Margaret B. Harrison, RN, PhD, and Jennifer Medves, RN, PhD, are
assistant professors in the School of Nursing at Queen's University
with cancer to deal with these stressors may depend largely on
in Kingston; and Joan Tranmer, RN, PhD, is the director of nursing
the supportive care available to them (Buckley, 2000; Clarke-
research at Kingston General Hospital. (Submitted October 2003.
Steffen, 1993; Enskar et al., 1997a; Shields et al.; Williams;
Accepted for publication April 7, 2004.)
Yiu & Twinn, 2001). The provision of supportive care is a key
component of nursing care for a child and family dealing with
Digital Object Identifier: 10.1188/04.ONF.E116-E126
ONCOLOGY NURSING FORUM ­ VOL 31, NO 6, 2004
E116
Table 1. Definitions of and Percentages Cited for Supportive
Research Foundation, which now is known as Cancer Care
Care Needs
Ontario, was used. This framework characterizes supportive
care as the provision of necessary services as defined by those
%a
Care Need
Description
living with or affected by cancer to meet their physical, in-
formational, psychosocial, emotional, practical, and spiritual
Informational
88
Need for information to reduce confusion, anxiety, and
needs during the prediagnostic, diagnostic, treatment, and
fear; better inform the patient's or family's decision
follow-up phases, while encompassing issues of survivorship,
making; and assist in skill acquisition
palliation, and bereavement (Fitch, 1994). The model outlines
Emotional
84
Need for sense of comfort, belonging, and reassurance
a taxonomy of supportive care needs and influencing factors
in times of stress and understanding
(see Figure 1). The six categories of need are outlined in Table
Psychosocial
80
Needs related to one's sense of self-worth, compe-
1. The category of informational needs is divided further into
tence, and being valued; needs related to family
relationships and community acceptance
subcategories of medical, practical, and emotional informa-
Practical
45
Need for direct assistance to accomplish a task or
tion. These needs are thought to vary across this spectrum of
activity and thereby reduce demands on the person
experience. Families are faced with a continuum of care that
Spiritual
22
Needs related to the meaning that life holds a sense of
involves many different sectors, including hospitals, com-
purpose and a relationship with a higher being
munity home care, and ambulatory specialty clinics. Frequent
Physical
10
Physical comfort, freedom from pain, optimum
hospitalizations, lengthy treatments, and complications affect
nutrition, and ability to carry out activities of daily
the daily routine for children with cancer and their parents
living
(McCray, 1997).
The literature on supportive care has evolved from a focus on
a
Represents the percentage of instances that supportive care needs were cited
in the literature reviewed.
the dying child to the child and family living with cancer and an
uncertain future (Grootenhuis & Last, 1997a). Two supportive
Note. Based on information from Fitch, 1994.
care reviews related to families dealing with children with
cancer have been published. Peace, O'Keeffe, Faulkner, and
Clark (1992) specifically focused on psychosocial needs and
psychological support is needed most or the most beneficial
assessed needs from the perspective of the disease trajectory,
format. More stresses may result from medical progress and
the individual within the family, the family as a single unit, and
options as well as societal changes in the intervening years. The
social and cultural influences. Sixty-four clinical and research
authors also noted a preponderance of disease-related research
articles published from 1978­1990 were included in the review.
that does not advance knowledge about coping and indicated a
The time of diagnosis, days immediately after diagnosis, and
major gap in the evaluation of intervention measures.
first relapse after treatment were found to be the most stressful
In their review, Grootenhuis and Last (1997a) cited 84 re-
times for parents. Parents wanted information about their child's
search articles published from 1980­1995 that specifically ex-
illness to be truthful and provided in appropriate verbal and
amined the literature related to parental adjustment in terms of
written formats. Peace et al. were unable to recommend when
psychological distress, marital distress, and family function-
ing. Most of the articles were descriptive studies and focused
on three main areas: results recorded (a) only in parents, (b)
in families of children with cancer, and (c) in children with
Influencing Factors
cancer with some measurements recorded for their parents.
Practical
The authors acknowledged difficulty in generalizing the find-
Socioeconomic status,
age, gender
ings from these studies, which were conflicting because of the
Spiritual
Cultural
number of issues. Mothers and fathers had different levels of
Education
experience or reports of emotions throughout the course of the
Religion
Psychosocial
child's illness. Parents may be assessed for coping as a dyad,
Family
but assessments more commonly were completed with the
Form
Informational
mother alone. This was viewed as problematic because moth-
Stage
ers and fathers experience situations differently throughout the
Urban
course of the child's illness; these differences can contribute to
Emotional
Rural
the various levels of stress experienced. Men and women also
Social support
reported and expressed emotions differently. Parents' emo-
Coping resources
Physical
Personality
tional problems declined when their child was no longer in
treatment (Grootenhuis & Last, 1997a). The studies reviewed
had conceptual and methodologic limitations, including small
sample size, nonvalid measures of coping, inclusion of diverse
populations of children with cancer (developmental and at
different stages of treatment), various methods used in report-
ing emotional problems by mothers and fathers, challenges in
assessing illness-specific problems, and different definitions
Spectrum of Experience
and measures of coping and adjustment.
Figure 1. Conceptual View of Focus for Supportive Care
No reviews have been published that synthesized the full
range of supportive care needs of parents. Peace et al. (1992)
Note. From Providing Supportive Care for Individuals Living With Cancer (p.
and Grootenhuis and Last (1997a) focused on general aspects
10) by M.I. Fitch, 1994, Toronto, Canada: Ontario Cancer Treatment and Re-
of supportive care throughout the continuum of care. These
search Foundation. Copyright 1994 by M.I. Fitch. Reprinted with permission.
ONCOLOGY NURSING FORUM ­ VOL 31, NO 6, 2004
E117
reviews covered literature published through 1995. The cur-
studies cited three or more of the supportive care needs
rent review was undertaken to update the previous work and
identified within the framework. The majority of the studies
analyze the research literature related to the pediatric oncol-
reported on informational needs (88%) and emotional needs
ogy population and the full range of supportive care needs
(84%). Within each of the six categories of need, citations of
during the diagnostic and treatment phases. Additionally, the
specific needs were noted. Informational needs were cited
review was guided by the concepts outlined within the SCNF
132 times compared to 58 citations in the next most common
and the question: "What are the supportive care needs of
category, emotional needs.
parents of children with cancer in transition from diagnosis
Informational Needs
to treatment?"
Parents most frequently sought general medical informa-
Review Methodology
tion about their child's cancer (Cayse, 1994; Chesler & Parry,
2001; Clarke-Steffen, 1993, 1997; Eden, Black, MacKinlay,
The search strategy was designed using terms to target the
& Emery, 1994; Enskar et al., 1997b; Goldbeck, 2001; Han
research literature and capture information about physical,
& Belcher, 2001; Martinson et al., 1993; Mercer & Ritchie,
psychosocial, emotional, practical, spiritual, and informa-
1997; Mu et al., 2001; Mu, Ma, Hwang, & Chao, 2002; Saw-
tional needs. The CINAHL® and MEDLINE® databases were
yer, Antoniou, Toogood, Rice, & Baghurst, 2000; Sharan,
searched for literature published from 1992­2002. Research
Mehta, & Chaudhry, 1999; Shields et al., 1995; Sterken, 1996;
since 1992 was sought because earlier studies would have
Williams, 1992; Wills, 1999; Yeh, 2002; Yiu & Twinn, 2001).
limited relevance given the changes in pediatric cancer
They wanted written information for reference when health-
treatment and healthcare services delivery over this time.
care professionals were not available (Aitken & Hathaway,
The search was limited to English-language articles. Subject
1993; Buckley, 2000; Eden et al.; Martinson, Liu-Chiang,
headings were searched individually within each database
& Yi-Hua, 1997; Neil-Urban & Jones, 2002; Santacroce,
to generate the most relevant results. The literature search
2002), and they desired detailed and well-defined informa-
generated 158 articles from CINAHL and 187 articles from
tion about the child's treatment (Levi, Marsick, Drotar, &
MEDLINE (34 articles were duplicates). Abstracts of the
Kodish, 2000; Shields et al.; Sterken). Parents wanted to be
studies were reviewed further to determine whether they met
involved in decision making related to their child's treatment
the review inclusion criteria, including being a quantitative
and to understand the risks and side effects involved (Pyke-
or qualitative study, addressing one or more of six support-
Grimm, Degner, Small, & Mueller, 1999). Specific informa-
ive care needs (i.e., informational, emotional, psychosocial,
tion that focused on how to care for their sick child also was
practical, physical, and spiritual), focusing on the parent of a
needed (Mercer & Ritchie; Mu et al., 2002; Pyke-Grimm et
child with cancer, and relating to the diagnosis or treatment
al.; Shields et al.; Yeh, Lee, Chen, & Li, 2000; Yiu & Twinn).
phase of cancer. Next, structured abstracts were created for
Having information about their child's condition was essential
each study that summarized the design, population, methods,
for parents' peace of mind, allowing them to feel some control
and findings. Each study was reviewed using the analytical
over the situation, stay optimistic, and develop strategies that
framework to identify whether needs were addressed or
directly could benefit their child (Mercer & Ritchie; Mu et al.,
reported and then categorized based on the definitions of
2002; Shields et al.; Yeh et al.; Yiu & Twinn).
the needs provided.
Emotional information was the second most frequently cited
From the structured abstracts, a synthesis table was devel-
area of concern for parents of children with cancer. Providing
oped to highlight the themes in the 49 studies reviewed. One
reassurance, as well as coping strategies, to parents at the time
reviewer developed the synthesis table, and a second reviewer
of diagnosis was identified as being important (Chesler &
independently read and validated the content. A third reviewer
Parry, 2001; Clarke-Steffen, 1993). Parents also had a need for
adjudicated any discrepancies identified by the two indepen-
positive expectations and a positive outlook (Grootenhuis &
dent reviewers.
Last, 1997b; Yeh et al., 2000). They wanted healthcare profes-
sionals to be available to answer questions and to refer them
Results
for professional counseling if needed (Brown & Barbarin,
1996; Larson et al., 1994; Wills, 1999; Yiu & Twinn, 2001).
A total of 49 studies met the inclusion criteria (see Table
The parents' education level, gender, and understanding of
2). Studies were not included in the review for a number of
the experience influenced the provision of information (Eden
reasons, including that they did not address the diagnosis or
et al., 1994; Hoekstra-Weebers et al., 1998; Tarr & Pickler,
treatment period (25%), did not focus on childhood cancer
1999). Mothers were at an increased risk for distress if they
(21%), focused on the child or sibling but not the parents
believed that they received less emotional support and were
(31%), focused on other chronic illnesses (10%), or were not
more dissatisfied with care at the time of diagnosis (Hoekstra-
research studies (13%).
Weebers et al., 2001), whereas fathers with a higher education
The 49 studies were descriptive in design. Twenty-five
level had the greatest amount of anxiety (Mu et al., 2002).
used quantitative methods, 20 used qualitative methods, and 4
Practical information focusing on the resources available
used mixed methods. Questionnaires or surveys (n = 25) were
to parents of children with cancer needs to be available (Han
used in the quantitative studies; focus groups (n = 4) and/or
& Belcher, 2001; Mercer & Ritchie, 1997; Mu et al., 2001;
interviews (n = 17) were conducted in the qualitative studies.
Sloper, 1996). The accessibility of general information and
A combination of questionnaires and interviews was used in
availability of practical resources were essential for parents of
the four mixed-methods studies.
children with cancer in decreasing their frustration as well as
A review of the 49 studies revealed that needs were cited
the feeling of inconveniencing the staff (Aitken & Hathaway,
within all six of the SCNF categories. Most (n = 32) of the
1993; Mercer & Ritchie).
ONCOLOGY NURSING FORUM ­ VOL 31, NO 6, 2004
E118
Table 2. Summary of the Literature Reviewed
Population and
Pediatric
Study
Study Design
Patients
Variable of Interest
Instruments
Parental Needs
Aitken & Hathaway,
53 parents
In treatment,
Stress and coping behavior in
Four of six scales from the Pa-
Informational, psycho-
1993
Descriptive and
most with leu-
relation to distance to the hos-
rental Perception Inventory (PPI)
social, emotional, and
quantitative
kemia
pital
were developed from Hymovich
practical needs
Chronicity Impact and Coping
Instrument: concerns, beliefs
and feelings, coping, and general
information.
Brown & Barbarin,
68 mothers and
44% were one-
Similarities and differences in
Questionnaires (either through
Informational, psycho-
1996
56 fathers
year postdiagno-
perception, emotional response,
the mail or extensive in-home
social, emotional, and
Descriptive and
sis; majority had
and performing family- and ill-
interviews)
practical needs
quantitative
acute lympho-
n e s s - r e l a t e d tasks between
c y t i c leukemia
mothers and fathers
(ALL).
Buckley, 2000
13 mothers and
Not identified
Parents' informational needs and
Survey
Informational, psycho-
fathers
views on possible introduction of
social, and emotional
Descriptive and
a written file containing informa-
needs
quantitative
tion after child's diagnosis
Cayse, 1994
23 fathers
61% male; ma-
Stress and coping strategies of
PPI
I n f o r m a t i o n a l , psy-
Descriptive and
jority had ALL,
fathers with a child with cancer
chosocial, spiritual,
quantitative
were 3­6 years
emotional, and practi-
old, and were 18
cal needs
months postdi-
agnosis.
Chesler & Parry,
167 fathers
Mixed diagnosis
Nature of fathers' experiences
Interview and workshop
I n f o r m a t i o n a l , psy-
2001
Descriptive and
and how gender shapes fathers'
chosocial, spiritual,
qualitative
experiences of parenting a child
emotional, and practi-
with cancer
cal needs
Clarke-Steffen,
40 members of
3 males and 4 fe-
Strategies used by families in
Three semistructured interviews
Informational and emo-
1993
7 families
males aged 2­10
response to childhood cancer
(6­13 days after diagnosis,
tional needs
Descriptive and
years; 3 with ALL,
12 weeks postdiagnosis, and 3
qualitative
3 non-Hodgkin
months after remission)
lymphoma, and
1 advanced lym-
phocytic lym-
phoma
Clarke-Steffen,
32 family mem-
3 males and 4
Strategies used by families in
Three semistructured interviews
I n f o r m a t i o n a l , psy-
1997
bers
females with a
response to childhood cancer
(within a week of diagnosis and
chosocial, spiritual,
Descriptive and
leukemia or lym-
remission, and three months after
emotional, practical,
qualitative
phoma diagnosis
second interview)
and physical needs
aged 2­11 years
Cornman, 1993
20 families
80% had ALL
Individual, dyadic, and family
T h r e e sets of data from each
Informational, psycho-
Descriptive and
and 20% had
response to cancer experience
member over six months; parents
social, emotional, and
quantitative
lymphoma; aged
regarding life stressors, self-
and children were asked to create
practical needs
6­16 years
esteem, marital satisfaction,
drawings and were compared with
and perception of family envi-
norms on quantitative measures.
ronment
Dahlquist et al.,
84 parents (42
Diagnosed 20
Marital adjustment as it related
Spielberger State-Trait Anxiety
Psychosocial and emo-
1996
couples)
months before
to parents' affective distress and
Inventory, Beck Depression Inven-
tional needs
Descriptive and
evaluation; 48%
coping style
tory, Modified Repression-Sensi-
quantitative
leukemia, 17%
tization Scale, and Dyadic Adjust-
lymphoma, 26%
ment Scale were completed 2 and
solid tumor, 9%
20 months after diagnosis.
brain tumor; aged
1.9­18 years
(Continued on next page)
Note. Mixed diagnoses included acute lymphocytic leukemia, acute myelocytic leukemia, lymphoma, and solid tumors.
ONCOLOGY NURSING FORUM ­ VOL 31, NO 6, 2004
E119
Table 2. Summary of the Literature Reviewed (Continued)
Population and
Pediatric
Study
Study Design
Patients
Variable of Interest
Instruments
Parental Needs
Eden et al., 1994
23 couples
Aged 5 months­
Receptiveness of parents to
Structured interview three months
Informational, psycho-
Descriptive and
13 years with
information given about child's
after diagnosis
social, and emotional
qualitative
mixed diagnoses
illness
needs
Enskar et al., 1997a
5 families
3 females and
Children's experience of prob-
Interview at patients' residence
Informational, psycho-
Descriptive and
2 males aged
lems related to cancer and the
or in hospital (tape recorded and
social, and emotional
qualitative
6.5 ­12.5 years;
effect of the disease on their life
transcribed)
needs
4 had ALL, and 1
situation
had sarcoma.
Enskar et al., 1997b
16 couples
10 females and 5
Identify parents' experience of
Semistructured interviews (taped
Informational, psycho-
Descriptive and
males aged 6­20
the changes and challenges of
recorded and transcribed)
social, emotional, and
qualitative
years with mixed
child's disease on life situation.
practical needs
diagnoses
Ferrell et al., 1994
31 families
10 males and
Describe family factors that in-
Structured interviews
Psychosocial, spiritual,
Descriptive and
11 females aged
fluence pain management and
emotional, practical,
qualitative
5­22 years
measure the knowledge and
and physical needs
attitude of family caregivers in
managing pediatric pain.
Goldbeck, 2001
25 families with
16 males and
Effects of gender and disease on
Coping Health Inventory for Par-
Informational, psycho-
child with new
9 females aged
parental coping and parents' and
ents, Trier Coping Scales, Ulm
social, and spiritual
cancer diag-
0.5­15 years; 10
children' quality of life
Quality of Life, and an inventory
needs
nosis and 29
had a solid tumor
for parents of a chronically ill
with newly di-
and 15 had ALL
child
agnosed dia-
or lymphoma.
betic child
Descriptive and
quantitative
Grootenhuis &
83 parents with
43 in remission
Determine which variables pre-
Semistructured interviews, De-
Informational and emo-
Last, 1997b
a child in re-
and 41 relapsed
dict the emotional adjustment of
pression Questionnaire for Chil-
tional needs
mission and
with mixed diag-
mothers and fathers of children
dren, Control Strategy Scale, Beck
80 parents
noses
with cancer.
Depression Inventory, Trait Anxiety
with a child
Inventory, and a situation-specific
who relapsed
emotional reaction questionnaire
Descriptive and
triangulation
Han & Belcher,
73 parents
55 males and
Describe aspects of computer
Survey created for study was done
Informational, psycho-
2001
Descriptive and
18 females with
use as a vehicle for self-help
online; six questions were about
social, and emotional
quantitative
mixed diagnoses
by parents of children with
use of computers for support.
needs
cancer.
Hoekstra-Weebers
62 couples
Mixed diagnoses
Investigate differences in psy-
Symptom Checklist focused on
Informational, psycho-
et al., 1998
Descriptive and
chological distress and cop-
presence of psychiatric symptom-
social, and emotional
quantitative
ing styles between fathers and
atology, Goldberg General Health
needs
mothers of pediatric patients
Questionnaire (GHQ) detected
with cancer.
nonpsychotic psychiatric disorder,
and a questionnaire measured
coping at diagnosis, 6 months,
and 12 months.
Hoekstra-Weebers
128 parents
41 males and
Examine the effect of support
GHQ and Social Support List In-
Psychosocial and emo-
et al., 2001
Descriptive and
25 females with
on psychological functioning of
teractions and Discrepancies were
tional needs
quantitative
mixed diagnoses
parents of a child with cancer.
completed within 14 days and 6
and 12 months after diagnosis.
Jelalian et al., 1997
44 mothers (22
Aged 3­10 years
Examine factors influencing the
Discipline Strategies Question-
Psychosocial and emo-
had a child
and in treatment
use of discipline and specific
naire, Eyberg Child Behavior In-
tional needs
with cancer
for ALL and acute
discipline strategies.
ventory, and a structured parent
and 22 had a
myelocytic leu-
interview
healthy child)
kemia
Descriptive and
triangulation
(Continued on next page)
Note. Mixed diagnoses included acute lymphocytic leukemia, acute myelocytic leukemia, lymphoma, and solid tumors.
ONCOLOGY NURSING FORUM ­ VOL 31, NO 6, 2004
E120
Table 2. Summary of the Literature Reviewed (Continued)
Population and
Pediatric
Instruments
Study
Study Design
Variable of Interest
Parental Needs
Patients
Ways of Coping Questionnaire and
LaMontagne et al.,
20 parents
Examine what parents identify as
Informational, psycho-
11 females aged
Observation Scale of Behavioral
1999
Descriptive and
a primary stressor before child's
social, and emotional
3­10 years
Distress; parents were observed
quantitative
invasive procedure, coping strat-
needs
and scored during invasive events.
egies used, and level of distress.
Coping Strategies Inventory, So-
Larson et al., 1994
17 couples with
E x a m i n e differences in how
Informational, psycho-
In treatment and
cial Support Questionnaire, Dy-
a child with
mothers and fathers of children
social, and emotional
follow-up
adic Adjustment Scale, Spielberger
cancer and 32
with cancer cope and adjust.
needs
State-Trait Anxiety Inventory, and
couples with a
Beck Depression Inventory
child with flu
Descriptive and
quantitative
Three focus groups
Levi et al., 2000
22 parents
Describe retrospective percep-
Informational and psy-
Aged 2­18 years
Descriptive and
tions of parents of the circum-
chosocial needs
qualitative
stances of their child's cancer
diagnosis and of the informed
consent process.
Lansky Play Performance Scale for
Manne et al., 1996
55 families
Examine the functioning of par-
P s y c h o s o c i a l , emo-
Aged 3­18 years
Children Revised, Family Routines
Descriptive and
ents at six months postdiag-
tional, and practical
Inventory, Family Adaptability and
quantitative
nosis.
needs
Cohesion Scales III, Achenback
Child Behavior Checklist, and Beck
Depression Inventory
Semistructured interview
Martinson et al.,
50 families (25
Impact of childhood cancer on
Informational, psycho-
34 males and
1993
newly diag-
50 Chinese families
social, and practical
16 females aged
nosed and 25
needs
3­16 years; 56%
undergoing
had ALL.
treatment)
Descriptive and
qualitative
Semistructured interviews, Parent
Martinson et al.,
89 families
Describe the Chinese parental
Informational, psycho-
53 males and
Support Scale, and Parent Stress
1997
Descriptive and
physiologic reactions to their
social, spiritual, emo-
36 females aged
Rating Scale
triangulation
child's cancer treatment and
tional, practical, and
0.5 ­17 years
death.
physical needs
with mixed diag-
noses in a variety
of stages of can-
cer experience
Semistructured interview guide,
Martinson et al.,
18 families
Compare caregiving behaviors
Informational, emo-
Aged 1­16 years
Functional Status II®, Impact on
1999
Descriptive and
of Chinese and Caucasian North
tional, and practical
Family Scale, Symptom Checklist
triangulation
American families with a child
needs
90 Revised, and Care Giving Pat-
with cancer.
terns Inventory; data were collect-
ed at diagnosis, after remission or
four to six months after diagnosis,
and one year after diagnosis.
Open-ended interviews (reported
McGrath, 2001a
12 families
Families experience with coping
Informational, psycho-
7 males and 5 fe-
at the time of induction remis-
Descriptive and
with the initial stage of treatment
social, emotional, and
males with ALL
sion)
qualitative
for childhood ALL
practical needs
aged 9 months­
10 years
Open-ended interviews (from end
McGrath, 2001b
12 families
Experience of accessing support
P s y c h o s o c i a l , emo-
7 males and 5 fe-
of remission induction to the end
Descriptive and
from perspective of parents with
tional, and practical
males with ALL
of the five-week period)
qualitative
a child undergoing treatment
needs
aged 9 months­
for ALL
10 years
Interviews
Mercer & Ritchie,
20 parents
Describe parents' experiences
Informational, psycho-
Leukemia or
1997
Descriptive and
with their resources during the
social, spiritual, emo-
solid tumors
qualitative
their child's cancer treatment.
tional, and practical
needs
(Continued on next page)
Note. Mixed diagnoses included acute lymphocytic leukemia, acute myelocytic leukemia, lymphoma, and solid tumors.
ONCOLOGY NURSING FORUM ­ VOL 31, NO 6, 2004
E121
Table 2. Summary of the Literature Reviewed (Continued)
Population and
Pediatric
Instruments
Study
Study Design
Patients
Variable of Interest
Parental Needs
Parental Perception of Uncertainty
Mu et al., 2001
100 mothers
In treatment,
Examine impact of family stress
Informational and emo-
Scale, Sense of Mastery Scale,
Descriptive and
mixed diagno-
of caring for child with malig-
tional needs
Spielberger State-Trait Anxiety
quantitative
ses, 65% male
nancy as it relates to maternal
Inventory, and Boundary Ambigu-
experience.
ity Scale
Parental Perception of Uncertainty
Mu et al., 2002
80 fathers
Aged 0.6­19
Examine the stress impact that
Informational and emo-
Scale, Sense of Mastery Scale, and
Descriptive and
years, 58 not in
caring for a child undergoing
tional needs
State Form of the Anxiety Scale
quantitative
remission, mixed
chemotherapy or radiation ther-
diagnoses
apy has on a family.
Two focus groups guided by an
Neil-Urban &
5 fathers
In treatment or
D e s c r i b e the experience of
Informational, psycho-
open-ended questionnaire
Jones, 2002
Descriptive and
completed treat-
fathers who have a child with
social, emotional, and
qualitative
ment in past four
cancer.
practical needs
months
Coping Scale of Health and Daily
Noojin et al., 1999
32 families
O l d e r than age
Explore role of maternal coping
Informational and psy-
Living Form, Family Relationship
Descriptive and
six with mixed
and family functioning in child
chosocial needs
Index of the Family Environment
quantitative
diagnoses, 70%
depression.
Scale, and Child Depression In-
male
ventory
Sociodemographic Disease and
Pyke-Grimm et al.,
58 parents
In treatment,
Parents' preferred role in treat-
Informational needs
Treatment Questionnaire, Control
1999
Descriptive and
younger than age
ment decision making and par-
Preferences Scale for Pediatrics,
quantitative
13, 66% female
ents' priority information
and Information Needs Question-
naire
Mishel's Parental Perception of
Santacroce, 2002
15 parents
3 males and 9 fe-
Describe relationships among
Informational, emo-
Uncertainty Scale, Spielberger
Descriptive and
males with mixed
uncertainty, anxiety, and symp-
t io n al , and physical
State-Trait Anxiety Inventory, and
quantitative
diagnoses
toms of post-traumatic stress
needs
a reaction index used to measure
(PTS) in parents with a child
symptoms of PTS
recently diagnosed with cancer.
Child Behavior Checklist, General
Sawyer et al., 2000
88 families (49
M i x e d diagno-
Assess psychological adjustment
Informational, psycho-
Health Questionnaire, and Gen-
were the con-
ses
of children treated for cancer and
social, and emotional
eral Functioning Scale; assessed
trols)
their parents.
needs
immediately after diagnosis and
Descriptive and
annually for four years
quantitative
Centers for Epidemiological Stud-
Shapiro et al., 1998
29 mothers
Aged 2­16 years;
Investigate association among
Psychosocial needs
ies­Depression Scale (measures
Descriptive and
22 with leukemia
family relationships, personal-
level of depression and sense of
quantitative
and 7 with a sol-
psychological caregiver adapta-
burden)
id tumor (20 in
tion, and ability to function within
remission, 5 re-
healthcare system in mothers.
lapsed, and 4 not
in remission)
Comprehensive Psychopathologi-
Sharan et al., 1999
30 parents (15
ALL
Assess frequency and likely as-
Informational, psycho-
cal Rating Scale, Hamilton Depres-
have child
sociations of psychiatric disor-
social, and emotional
sion Rating Scale, and Spielberger
with a psychi-
ders in parents of children with
needs
State-Trait Anxiety Inventory
atric disorder
cancer.
and 15 have a
child without)
Descriptive and
quantitative
Family Needs Survey
Shields et al., 1995
77 families
22 newly diag-
Assess perceived psychosocial
Informational, psycho-
Descriptive and
nosed, 16 more
needs of families who have a
social, emotional, and
quantitative
than one year
child with cancer.
practical needs
postdiagnosis
and in treatment,
35 in remission,
4 died
(Continued on next page)
Note. Mixed diagnoses included acute lymphocytic leukemia, acute myelocytic leukemia, lymphoma, and solid tumors.
ONCOLOGY NURSING FORUM ­ VOL 31, NO 6, 2004
E122
Table 2. Summary of the Literature Reviewed (Continued)
Population and
Pediatric
Study
Study Design
Patients
Variable of Interest
Instruments
Parental Needs
Skolin et al., 2001
11 parents
46 males and
Assess parents' perception of
Semistructured interviews (taped
Informational, emo-
Descriptive and
24 females aged
their child's eating patterns after
recorded and transcribed)
tional, practical, and
qualitative
9 months­18
onset of chemotherapy and the
physical needs
years with mixed
strategies they used to cope
diagnoses
when eating problems arose.
Sloper, 1996
68 mothers and
4 males and 7 fe-
Investigate levels of psychologi-
Questionnaires at 6 and 18 months
I n f o r m a t i o n a l , psy-
58 fathers
males with mixed
cal distress in parents of children
postdiagnosis
chosocial, emotional,
Descriptive and
diagnoses
with cancer.
practical, and physical
quantitative
needs
Sterken, 1996
31 fathers
17 males and 14
Describe the uncertainty and
Mishel's Parent Perception of
Informational, psycho-
Descriptive and
females, most in
consequential coping patterns
Uncertainty Scale and Jalowiec
social, and emotional
quantitative
treatment
in fathers of children with can-
Coping Scale
needs
cer.
Tarr & Pickler, 1999
4 families
Aged 2­6 years
Explore process by which fami-
Semistructured interviews
Informational, psycho-
Descriptive and
with ALL, in
lies of children with ALL "be-
social, spiritual, and
qualitative
maintenance
come" patients with cancer.
emotional needs
stage of treat-
ment
Williams, 1992
15 families and
9 males and 6 fe-
Describe how parents of chil-
Social Network Inventory, par-
Informational, psycho-
33 healthcare
males aged 2­19
dren with cancer perceive
ticipant observation, and in-depth
social, emotional, and
professionals
years
support and what they found
interviews
practical needs
Descriptive and
supportive while their child
qualitative
was hospitalized compared to
methods of healthcare profes-
sionals.
Wills, 1999
9 mothers and
5 males and 4
Explore experiences of Chinese
Semistructured interviews
Informational, psycho-
8 fathers
females aged
parents of children diagnosed
social, and emotional
Descriptive and
11 months­13
with ALL.
needs
qualitative
years with newly
diagnosed ALL
Yeh, 2001
63 parents
M i x e d diagno-
Increase the understanding of
Three semistructured interviews
Informational and spiri-
Descriptive and
ses
religious beliefs and practices
and focus groups
tual needs
qualitative
among Taiwanese parents of
pediatric patients with cancer.
Yeh, 2002
164 couples
M i x e d diagno-
Investigate gender differences
P a r e n t i n g Stress Index Short
Informational, psycho-
Descriptive and
ses
in measures related to stress in
Form, Symptom Checklist-35
social, emotional, and
quantitative
parents with a child diagnosed
Revised, and Marital Satisfaction
practical needs
with cancer.
Scale
Yeh et al., 2000
26 mothers and
Aged 0.8­15
Explore adaptational process of
Open-ended interviews
Informational, psycho-
6 fathers
years with mixed
Taiwanese parents of pediatric
social, spiritual, and
Descriptive and
diagnoses at all
patients with cancer.
emotional needs
qualitative
stages of illness
Yiu & Twinn, 2001
5 parents
Aged 1 month­14
Identify needs of Hong Kong
Two semistructured interviews (at
Informational, psycho-
Descriptive and
years with mixed
Chinese parents with a child
time of diagnosis and six months
social, emotional, and
qualitative
diagnoses
with cancer during period of
later)
practical needs
hospitalization following the
confirmation of a diagnosis.
Note. Mixed diagnoses included acute lymphocytic leukemia, acute myelocytic leukemia, lymphoma, and solid tumors.
ONCOLOGY NURSING FORUM ­ VOL 31, NO 6, 2004
E123
In addition to the informational needs identified, caregiv-
connect with other parents whose child had cancer also was an
ers' communication skills were seen as very important by
important source of support (Aitken & Hathaway, 1993; Brown
parents. Parents reported that the clarity of the information
& Barbarin; Han & Belcher, 2001; McGrath, 2001a, 2001b;
and the manner in which the information was communicated
Mercer & Ritchie, 1997; Shields et al.; Williams, 1992; Wills,
influenced their trust of healthcare professionals (Clarke-
1999; Yeh et al.). Support of other children and of the ill child
Steffen, 1997; Eden et al., 1994; Levi et al., 2000). Identified
was a significant factor that needed consideration by parents
barriers to communication between families and healthcare
of children with cancer (Brown & Barbarin; Clarke-Steffen,
professionals were the use of complex language and terms, a
1997; Enskar et al., 1997b; Mercer & Ritchie; Sawyer et al.,
reluctance by healthcare professionals to disclose information,
2000; Sloper, 1996; Wills; Yeh et al.; Yiu & Twinn, 2001).
attitudes of the person providing the information, lack of trust
Husbands and wives who were sensitive to one another's needs
in the information source, and not having both parents present
and were able to communicate openly and honestly felt more
(Clarke-Steffen, 1997; Eden et al.; Levi et al.; Sterken, 1996).
support from each other and were able to positively cope with
Some parents experienced difficulty in communicating with
the experience of their child's illness (Dahlquist et al.; Enskar
the physician and, as a result, used other sources of informa-
et al., 1997b; Ferrell et al., 1994; McGrath, 2001a; Sharan et
tion such as the Internet (Levi et al.). Individuals with lower
al., 1999; Tarr & Pickler; Yeh et al.). The support of healthcare
levels of education required assistance in processing and mak-
professionals, specifically nurses, was recognized as a major
ing sense of the information given to them (Santacroce, 2002).
influencing factor in parents' ability to cope positively with
Retaining information in a crisis or stressful situation was
their child's illness (Enskar et al., 1997b; McGrath, 2001b;
challenging; therefore, good communication skills and rep-
Shields et al.; Wills; Yiu & Twinn). Positive relationships with
etition of information were important (Buckley, 2000; Eden
professionals were important because parents often looked to
et al.; Enskar et al., 1997b; Santacroce; Shields et al., 1995).
them for support. Parental support was needed at the time of
Communication of information in a trusting, timely manner
diagnosis because more psychological problems were thought
was crucial because waiting to hear test results was very dis-
to be experienced at this time of the cancer journey (Sawyer
tressing (Buckley; Clarke-Steffen, 1993; Levi et al.).
et al.; Shields et al.).
Emotional Needs
Practical Needs
Emotional needs were the second most common category of
Support with finances was a highly recognized practical
needs cited. Although the percentage of emotional needs was
need (Aitken & Hathaway, 1993; Brown & Barbarin, 1996;
higher than that of psychosocial needs, the number of citations
Cayse, 1994; Enskar et al., 1997b; Martinson et al., 1993,
of each need within the literature differed. Emotional needs
1997, 1999; Mercer & Ritchie, 1997; Shields et al., 1995;
were cited 58 times in the literature, whereas psychosocial
Sloper, 1996; Yiu & Twinn, 2001). Families believed that
needs were identified in 95 citations.
they were being governed by their child's disease, and most
The most important emotional need was the feeling of un-
mothers believed that they needed to take time away from
certainty about the child's cancer, cure, diagnosis, treatment,
work to care for their sick child, thereby decreasing the
symptom management, and future (Buckley, 2000; Cayse,
amount of money coming into the household (Brown & Bar-
1994; Clarke-Steffen, 1993, 1997; Enskar et al., 1997b; Fer-
barin; Enskar et al., 1997b). The child's illness affected the
rell, Rhiner, Shapiro, & Dierkes, 1994; Santacroce, 2002;
normal day-to-day routines, creating stress for both parents
Shields et al., 1995; Sterken, 1996; Tarr & Pickler, 1999).
who were trying to manage work, family, and home issues
Many different emotions were cited by parents of children
(Brown & Barbarin; Chesler & Parry, 2001; Enskar et al.,
with cancer such as fear, powerlessness, denial, stress, guilt,
1997b; Ferrell et al., 1994; Neil-Urban & Jones, 2002; Yeh,
sadness, terror, anticipatory loss, anger, devastation, shock,
2002). Healthcare professionals needed to assess how families
and confusion (Brown & Barbarin, 1996; Cornman, 1993;
were managing daily activities and consider practical help that
Han & Belcher, 2001; Hoekstra-Weebers et al., 1998; Neil-
might be needed with cooking, picking up the mail, caring
Urban & Jones, 2002; Santacroce; Yeh et al., 2000; Yiu &
for siblings, offering respite from caregiving, and achieving
Twinn, 2001). Parents also described high levels of anxiety
a sense of normalcy (Brown & Barbarin; Cornman, 1993;
regarding their child's diagnosis, palliative care, and death
Manne et al., 1996; Martinson et al., 1993; McGrath, 2001a;
(Hoekstra-Weebers et al., 2001; Martinson et al., 1997, 1999;
Mercer & Ritchie; Shields et al.; Skolin, Hursti, & Wahlin,
Santacroce; Sawyer et al., 2000; Shields et al.). Parents rated
2001; Williams, 1992).
having a child diagnosed with cancer as the second highest
Spiritual and Physical Needs
level of distress, which was superceded only by the death of
their child (Martinson et al., 1997).
Spiritual and physical needs were cited in less detail than
the other needs. Regardless of their previous beliefs, parents
Psychosocial Needs
sought meaning for their experience and possible explana-
The main psychosocial need cited was for social support
tions for their child's disease from religious activities or
(Brown & Barbarin, 1996; Chesler & Parry, 2001; Clarke-
practices (Chesler & Parry, 2001; Clarke-Steffen, 1997;
Steffen, 1997; Cornman, 1993; Dahlquist et al., 1996; Enskar
Ferrell et al., 1994; Yeh, 2001; Yeh et al., 2000). Spiritual
et al., 1997b; Hoekstra-Weebers et al., 1998, 2001; Levi et al.,
support throughout the cancer journey should be offered to
2000; Martinson et al., 1993, 1997; Neil-Urban & Jones, 2002;
parents because they appear to search for help from religious
Shields et al., 1995; Tarr & Pickler, 1999; Yeh et al., 2000).
figures (Martinson et al., 1997; Mercer & Ritchie, 1997; Yeh,
Support from friends as well as support groups for parents
2001). The physical needs cited in the literature describe the
provided an opportunity for parents to talk with individuals
needs of the parents as well as the child with cancer. Parents
who were not directly attached to the child. Being able to
needed support related to understanding and managing the
ONCOLOGY NURSING FORUM ­ VOL 31, NO 6, 2004
E124
physical symptoms of their child's illness (Clarke-Steffen,
cope with the disease are affected. Although supportive care
1997; Skolin et al., 2001). Parents reported that their child's
is essential for enhancing the quality of care for the patient
pain was not taken seriously and that they could "feel" their
and family, achieving integration among all of these services,
child's physical pain continuously (Ferrell et al.). Parents
caregivers, and care settings is a formidable challenge (Pyke-
looked for support for their own physical symptoms of dif-
Grimm et al., 1999).
ficulty sleeping, upsetting dreams, fatigue, loss of appetite,
Research is required to elucidate the needs of families dur-
loss of weight, dizziness, headaches, and cold (Martinson et
ing the period of transition from diagnosis to treatment. This
al., 1997; Santacroce, 2002).
is a difficult time for children and their families because, for
most, the experience is new and presents many challenges.
Discussion
The continuum of care involves numerous sectors and pro-
viders in hospital, community, and ambulatory care settings.
The SCNF provides useful information in an adult popula-
Questions arise that may not have any definite answers.
tion. However, its use with pediatric populations has been
As the diagnosis of cancer is made and treatment begins,
challenging. The framework's definition of needs did not
the needs of the child and the family shift. Supportive care
appear to directly relate to a pediatric population and their
is required during this time within the illness continuum
families. The definition of the word "need" often has various
because parents can feel insecure and unsure about how
meanings and can create confusion when used in different
to care for their child's needs in relation to side effects as
contexts. Difficulties were encountered in categorizing some
well as come to the realization of and try to live with cancer
of the needs, and some needs could be categorized in more
(McCray, 1997).
than one place. Definitions of each need, as they relate directly
This review provides a detailed synopsis of parental
to the children, would facilitate categorization and perhaps
needs identified in the research to 2002. The six categories
development of strategies to meet needs. If needs are not well
of supportive care needs identified in the SCNF are cited
defined, they cannot be met satisfactorily.
in the literature, but no study was designed to examine the
With increasing specialization and a proliferating number
entire constellation of supportive care needs. A prospective
of services available, parents often are faced with a complex
assessment of needs from the perspective of parents and
and overwhelming array of professionals in various care set-
providers would be the next logical step of inquiry to assist
tings. The lack of communication and collaboration between
in the planning and provision of quality care from diagnosis
professionals within these various care settings has been cited
to treatment.
as a contributor to unmet needs (Buckley, 2000; Clarke-Stef-
fen, 1993; Enskar et al., 1997b; Shields et al., 1995; Williams,
Author Contact: Laura M.J. Kerr, RN, MSc, CON(C), can be
1992; Yiu & Twinn, 2001). When supportive care needs are
reached at kerrdl@kingston.net, with copy to editor at rose_
not met, ultimately, how the child with cancer and family
mary@earthlink.net.
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