Parental perceptions of health-related quality of life in children with leukemia in the second week after the diagnosis: A quantitative model

Abstract

The focus is on describing the child's health-related quality of life (HRQL) at the time of diagnosis as perceived by parents, by using an empirical model of their psychosocial context.
Patients were 128 leukemic children and their families recruited at the Haematology-Oncology Clinic of the Department of Pediatrics, University of Padova. The families were interviewed by a clinical psychologist during the first hospitalization of their children using the Ecocultural Family Interview-Cancer (EFI-C). This interview aimed at understanding the family daily routines as it relates to the child with cancer and the meaning and experience of the situation. Demographic data about children and their families also were collected.
The EFI-C interviews were read for content and then coded; these items were grouped into 11 major dimensions, three dealing with the child in the hospital and eight concerning the family. An empirical model of path analysis was estimated to evaluate perceived child's HRQL at the second week from the diagnosis inside the psychosocial context. This model shows that perceived child's HRQL is predicted by parental trust in the medical staff, perceived child coping, and perceived child adaptability. These last two predictors are in turn moderated by the fixed factor child age and mediated by parenting.
A better knowledge of parents' views and expectations regarding their children's HRQL during the first treatments for pediatric leukemia may facilitate the communication processes in the hospital and may help to provide improved psychosocial care for the child during the first treatments for leukemia.

Full text

ORIGINAL ARTICLE
Parental perceptions of health-related quality of life
in children with leukemia in the second week
after the diagnosis: a quantitative model
Marta Tremolada &Sabrina Bonichini &
GianMarco Altoè &Marta Pillon &Modesto Carli &
Thomas S. Weisner
Received: 16 September 2009 / Accepted: 23 February 2010
#Springer-Verlag 2010
Abstract
Purpose The focus is on describing the child’s health-
related quality of life (HRQL) at the time of diagnosis as
perceived by parents, by using an empirical model of their
psychosocial context.
Patients and methods Patients were 128 leukemic children
and their families recruited at the Haematology–Oncology
Clinic of the Department of Pediatrics, University of
Padova. The families were interviewed by a clinical
psychologist during the first hospitalization of their children
using the Ecocultural Family Interview—Cancer (EFI-C).
This interview aimed at understanding the family daily
routines as it relates to the child with cancer and the
meaning and experience of the situation. Demographic data
about children and their families also were collected.
Results The EFI-C interviews were read for content and
then coded; these items were grouped into 11 major
dimensions, three dealing with the child in the hospital
and eight concerning the family. An empirical model of
path analysis was estimated to evaluate perceived child’s
HRQL at the second week from the diagnosis inside the
psychosocial context. This model shows that perceived
child’s HRQL is predicted by parental trust in the medical
staff, perceived child coping, and perceived child adapt-
ability. These last two predictors are in turn moderated by
the fixed factor child age and mediated by parenting.
Conclusion A better knowledge of parents’views and
expectations regarding their children’s HRQL during the
first treatments for pediatric leukemia may facilitate the
communication processes in the hospital and may help to
provide improved psychosocial care for the child during the
first treatments for leukemia.
Keywords Children .HRQL .Leukemia
Introduction
This paper focuses on how parents of children with
leukemia view the health-related quality of life (HRQL)
of their children during the first treatments and on possible
HQRL associations with psychosocial factors. The post-
diagnosis is a sensitive period for the patients and for their
M. Tremolada (*):S. Bonichini :G. Altoè
Department of Developmental and Social Psychology,
University of Padova,
Via Venezia 8,
35131 Padova, Italy
e-mail: marta.tremolada@unipd.it
S. Bonichini
e-mail: s.bonichini@unipd.it
G. Altoè
e-mail: gianmarco.altoe@unipd.it
M. Pillon :M. Carli
Haematology–Oncology Division, Department of Paediatrics,
University Hospital of Padova,
Via Giustiniani, 3,
35128 Padova, Italy
M. Pillon
e-mail: marta.pillon@unipd.it
M. Carli
e-mail: modesto.carli@unipd.it
T. S. Weisner
Department of Psychiatry (NPI Semel Institute,
Center for Culture and Health) and Anthropology, UCLA,
760 Westwood Plaza, Rm C8-678,
Los Angeles, CA 90024-1759, USA
e-mail: tweisner@ucla.edu
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DOI 10.1007/s00520-010-0854-5

families [1]; parents report that most children show
behavioral and mood difficulties [2]. The stressors related
to cancer and the therapies are numerous: medical proce-
dures (needles, lumbar punctures, bone marrow tests),
chemotherapy sequelae (pain, weakness, nausea, vomiting,
and toxic reactions), loss of control, hospitalization, hair loss,
infections, isolation from friends, and disruption of normal
activities (e.g., not going to school) [3,4]. The management
of stressors can be often difficult, with children perceiving
this invasiveness with high intensity and with a related high
level of anxiety and lower self-esteem [5].
Quality of life (QOL) assessment is a complex challenge
for pediatric researchers and clinicians. Several instruments
have been used to assess survivors of childhood cancer [6,
7], but their application in studies of children receiving
active therapy for cancer has been limited. An interesting
study [8] comparing respectively in and off treatment
children’s QOL with healthy controls shows that children
undergoing cancer treatment report low overall QOL,
physical functioning, and outlook-on-life scores than
healthy controls, while off-treatment children report a
superior overall QOL than healthy controls.
It is important to note that the evidence on HRQL in
children with cancer is mostly based on preformatted, rigid
measures such as questionnaires [9]. In order to be sensitive
to developmental differences in HRQL markers, instru-
ments must evaluate HRQL domains that are appropriate
for the developmental stage considered [10]. Sometimes,
questionnaire-based information may not facilitate the
communication between doctor and patient, especially
when the patient is a young child and the communication
must pass through the parents. Thus, the existing
questionnaire-based evidence on the HRQL of children
with cancer should be complemented by evidence drawn
from open-ended verbal reports by the parents [11,12] and
also by the patients, when they are mature enough to report
their HRQL by complex verbal means [13–15]. We also
have to take into consideration that HRQL is only one part
of QOL; nonetheless, it can be a useful clinical tool to
devise a psychosocial intervention program.
We do not know much on how parents mentally
represent the HRQL of their children with cancer, whether
they attribute importance to the same issues which have
been identified by the experts, or whether they have
something new to tell. We strongly believe that both
parents and child do have a great deal to contribute to our
understanding of QOL, which many clinicians experience
and do recognize, but which has not been systematically
captured in a form useful for practice and intervention.
This paper addresses two main questions: First, what is
the parents’definition of the HRQL of children with
leukemia? We did this through a qualitative interview,
listening closely to what the parents had to say in their own
narrative voices. After this initial qualitative phase (which
we cannot fully show in this report), we transformed these
narratives into quantitative dimensions of family routines
and parent perceptions by coding the interviews using
techniques from the Ecocultural Family Interview—Cancer
(EFI-C). Second, after coding our qualitative data, we
explored which child characteristics, such as age or type of
leukemia, and which family factors may have affected
parents’definitions of children’s HRQL in the second week
after the communication of the diagnosis.
Materials and methods
Patients and recruitment
Patients were 128 leukemic children and their families
recruited at the Haematology–Oncology Clinic of the
Department of Pediatrics, University of Padova. All parents
(111 mothers and 17 fathers) were Caucasian with a mean
age of 37.39 years (SD=6.03). Most parents had 13 years
of school (51.3%), 33.6% had 8 years, 7.1% had first level
degree, 6.2% had second level degree, and 1.8% had
5 years of school. Parents’incomes were average (52.7%),
high (24.1%), and low (23.2%) compared to Italian norms,
but all were above poverty. In a preliminary analysis, we
examined differences between fathers and mothers. There
were no significant differences in our variables so we
decided to consider all interviews together.
Children’s mean age was 5.89 years (SD=4.21, range=
10 months–17 years), 28.9% of them were infants (N= 37),
39.1% preschoolers (N=50), 17.2% children in primary
school age (N=22), and 14.8% pre-adolescents and adoles-
cents (N=19).
Most children were affected by acute lymphoblastic
leukemia (N=104), while 24 had acute myeloid leukemia.
Children were equally distributed by gender with 61 girls
and 66 males. All eligible families agreed to participate to
the study and gave their informed consent except for two
families that declared that they did not feel able to speak
about their feelings to anyone at that point. The study was
approved by the Institutional Ethics Committee, and it has
been performed in accordance with the ethical standards
laid down in the 1964 Declaration of Helsinki.
Data collection
The families were contacted by a clinical psychologist
during the first hospitalization of their children. Project
aims were explained and informed consent was asked for.
The interviews were carried out in a quiet room of the clinic
in the second week after the diagnosis and lasted about 1 h.
They were audio-recorded and later fully transcribed. We
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used the EFI [16] to understand the family daily routines as
their routines related to the child with cancer. The EFI was
originally devised to study the adaptation process in
families of disabled children [17]. Different versions of
this interview have been developed for the study of various
issues in pediatric psychology, including studies with
Italian families about reactivity to pain [18], or with
children with headache [19], and finally, for families of
children with cancer (EFI-C) [11].
The EFI-C is a parent interview which explores the daily
routines of family life and the salient concerns regarding
how that routine is organized. The EFI is not a question–
answer formal interview, but it has more on the sociolin-
guistic form of an everyday conversation about daily life.
The interview is a mix of conversation, probing questions
by the interviewer and preplanned questions. Participants
use their words and emphases. The interviews start with a
question such as: “Would you guide me through your daily
life? Walk me through your day at this point. How have
things been going? What is your and your child’s routine at
this point/now?”The EFI interview form flows from our
theoretical and epistemological approach, which starts with
the observation that the family daily routines and actions
are aimed at adaptation tasks, in which various people
participate. Such tasks are carried out in practice according to
the family resources and through specific scripts or sets of
actions, which are meaningfully linked to the beliefs and
values of the broader ecology and culture and which show the
emotions and motivations held in them. When people talk
about their everyday life and routines, they spontaneously talk
about all these things as this is how the topic is stored in
memory.
When the adaptation tasks are overloaded by negative
emotion, as often in our families, the participants
sometimes can find relief during the interview process
itself [20]. The EFI can also be experienced as a kind of
life review—a chance to step back from the ongoing flow
of events and reflect on them—which is itself of potential
value. The EFI is also based on the theory that by using
the parents’own categories and stories, with the themes
and topics embedded in them, the researcher gets closer to
the parents’points of view and experiences [21,22].
Despite the naturalistic flow and ease of the talk, the
interviewer gently but firmly guides the narratives upon
events, facts, and actions (e.g., “What happened during the
doctor’s last visit?”,“How did your child react?”,“What
did you do?”). The themes and topics emerge from this
guided conversation for subsequent coding.
The EFI-C complements other measures of families of
children with cancer, or with children with other health
problems. EFI-C serves the aim to have reliable descriptions
of how parents sustain their life routines when a health
problem arises in their children. EFI-C can highlight the
parents’new goals and concerns and how they enact them.
Some information drawn from EFI-C narratives may overlap
with what researchers in the field already know, but other
information may surprise us. The parental narratives elicited
by EFI-C have the potential of opening a window into the
complex mental and practical job of parenting a child with
cancer, or with other challenging diseases. They may help us
to get to know better the inner and interpersonal reality of
these families. That narrative may be somewhat unique to
every family and child, but we have identified clear items, and
overall dimensions that can be reliably scored.
There are several relevant observations about this type of
instrument.
The first is that the EFI-C can usefully complement other
instruments, especially when we want to understand the
coconstruction of the new daily routines affected by the
cancer diagnosis and treatments, across parents, children,
and other kin and friends.
The second observation is that we can find new variables
(probably “modifiable moderators”of child and parent
coping and adaptation in their routines) which, to our
knowledge, were never reported in the literature (i.e., the
level of trust they have concerning their medical care and
trust in the hospital community; the salience, meaning, and
consequences of changes in family routine and time
reorganization of their home and clinic life). These seem
to be two important and meaningful goals for these parents,
and they certainly are part of the active search for new
everyday life meanings which occur during the first child
hospitalization.
The third observation is that several of these dimensions or
concepts in parents’minds which emerged in the EFI coding
are close to variables already reported in the literature, thus
confirming construct validity for our technique.
We also gave a Socio-Economic Status Questionnaire to
parents, including the number of years of school achieve-
ment, type and average hours of job, economical status, and
the number of familiars and sons in the family.
Statistical procedures
Exploratory factor analysis was run to identify the EFI-C
dimensions once the interviews were coded and reliability
established. Data were first examined for skewness,
kurtosis, outliers, and normalcy (Kolmogorov–Smirnov
test): No transformations were necessary as the distribution
was normal for all dependent variables. Descriptive
analyses and Pearson’s bivariate correlations were used to
examine the associations between our variables. Finally, a
path model was constructed to evaluate the correlations and
covariances between variables of interest and to guide the
modeling of the effects of family and child factors on
perceived child’s HRQL during the first hospitalization.
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Results
Scoring of parental narratives: parents’definition
of the HRQL of children with leukemia
A total of 98 items, or coding topics and themes, were
extracted from the parental narratives, basing upon the
original codebook for this instrument, the literature about
leukemic children HRQL and several research group
discussions. One fourth of the total 128 interviews (N=
32) was coded with a score ranged 0 (low presence of
variable described in the item) to 8 (high presence of
variable) by two-independent judges showing a good
Spearman interrater reliability (rho= 0.833; p= 0.001). An
exploratory factor analysis was run to identify the
dimensions saturated by these items. The items grouped
into 11 major dimensions, three dealing with the parental
perceptions on the child in the hospital and eight
concerning the family. A good internal consistency in the
11 dimensions was demonstrated. Table 1presents for
each dimension the internal consistency, means, and
standard deviations.
We can note how child’scopingandchild’sHRQLas
perceived by parents are low in this early postdiagnosis
time and with a considerable standard deviation, showing
variability between the patients. The other dimensions
are average in variability.
The specific EFI-C dimension which is the focus of this
paper, namely perceived child health-related quality of life
in the hospital, will be presented here accompanied by
examples drawn from representative samples from the
qualitative parental narratives.
The parents of children newly diagnosed with cancer
define their children’s HRQL mostly as the capacity to
be able to keep meaningful links with the world outside
the hospital, even while they are in it. This capacity is
sustained by different people, including the children
themselves and also including some luck (e.g., positive
reactions to the therapies, few side effects, etc.). Another
very important feature in parents’narratives are the ways
in which parents themselves help children in sustaining
links with their previous lives (“Hehasheapsoffriends
who write. Heaps of letters. We pin them to a large
cardboard in his hospital room”) and the degree by which
children actively ask to be connected to the external world
(“There is a school mate in particular…he wanted to call
him while we were coming here. Now, we help him keep
in touch also with the other school mates”). The parents
underline as particularly important the maintenance of the
links with the child’s school and also the possibility to
work with teachers in the clinic. For younger children,
their capacity to take part in organized play activities in
the clinic is also important (“Sometimes she tells me:
“let’s go to the playroom [that is available in the
clinic]!””). As both previous research and earlier work
with the EFI anticipated, the children’s physical reaction
to the therapies belongs to this dimension of the HRQL
maintained in the clinic (“She had radiotherapy, but she is
fine. She has some stomach ache, but no vomiting or
headache”). Also the degree of children’s knowledge of
their cancer diagnosis, treatments, and prognosis belongs
to this dimension of children’s quality of life. Children
may greatly vary in the level of explicitness of information
that they have received concerning their diagnosis from
parents. Doctors often expressed concern about that. A
mother talked about not telling her son about his tumor:
“Enrico does not know what he has, nor do I want him to
know…but he suspects something because when his
brother said “My back hurts badly”, Enrico said: “You
have a tumor like me”…but as long as nobody tells him
Table 1 Descriptive statistics of EFI-C dimensions
Dimension (range 0–8) Alpha Number of items Mean SD
Parental emotional coping 0.75 13 4.89 0.83
Levels of communication on the child illness 0.57 8 4.62 0.91
Parenting the child in the hospital 0.81 9 5.16 0.95
Trust in the medical care and in the hospital community 0.79 6 4.95 1.07
Routine and time reorganization 0.79 16 4.28 0.72
Social support 0.71 5 4.46 1.33
Connectedness of the parental couple 0.93 9 5.13 1.34
Sibling involvement 0.68 5 5.61 9.72
Parental perceptions of child coping with procedures and hospitalization 0.89 12 3.94 1.36
Parental perceptions of child HRQL in the hospital 0.72 7 3.93 1.22
Parental perceptions of child adaptability 0.91 8 5.39 1.22
Total 0.94 98
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what he has, he is fine”. Unfortunately, it is fairly
common to find such situations, but most parents are
clear about the diagnosis, and sometimes find ingenious
ways to explain the illness to their young kids (“Come
on, let’s send the lions out from your blood stream to eat
all the blasts up!”).
Child and family characteristics affecting parental
perceptions of the HRQL of their leukemic children
in the second week after the diagnosis
We first used Pearson’s bivariate correlations to examine the
associations between our child variables (EFI-C child dimen-
sions, child type of leukemia, child age, child gender) and
family variables (EFI-C parent dimensions, demographic
information). We then established some path models to test
our second main question about child and family factors
responsible for HRQL of leukemic children. Using the current
literature cited above, a significant path analysis model was
found. Figure 1shows its structural standardized coefficients,
and Table 2shows the explanation of the EFI-C dimensions
involved into the path model.
This model showed that parental perceptions of child’s
HRQL were predicted by parental trust in the medical staff,
by parental perceptions of child coping, and by parental
perceptions of child adaptability. These last predictors were
in turn moderated by the fixed factor child’s age and by the
modifiable factor parenting. Parenting was also directly
predictive of parental perceptions of child’s HRQL, but less
so than by parental perceptions of child coping, as a
mediation effect. Child’s age influenced both parental
perceptions of coping and of adaptability, which in turn
was sustained also by parental trust in medical staff.
All the coefficients were significant at the p< 0.005 level.
The model had good fit indices (χ
2
(4)=5.03; N=128; p=
0.28; RMSEA= 0.045: NNFI = 0.99; CFI = 1).
Discussion
Narrative methods are vital to understand parental perceptions
of child’s HRQL. From narratives of parents of leukemic
children, we identified 11 dimensions representing perceived
child’s HRQL and family and child factors that can influence
it. Being able to easily quantify narrative data in this clinical
situation can be really useful both for research and clinical
reasons.
Parents’narratives in this sample expanded on the
current literature on children’s HQRL and associations
with it. For example, only communications with others
[23]andchild’s fatigue [14] have been identified as
possible predictors of child’s HRQL. The predictor of
child’s fatigue might be exacerbated by the emotional and
mental energy needed to cope with facing the unknown, as
well as the unfamiliar routine of coming to the clinic or
hospital [24]. Together with the child’sageandher/his
capacity of coping when she/he when diagnosed with
cancer, the child’s and family’s entire environment
shockingly changes, transforming itself from a regular
developmental niche [25] to a caring niche [26]. This
sudden and traumatic change requires an adaptation of the
child, the parent, and the interaction of the two and puts
child’s subsequent accommodation in a state of stress and
risk.
Our aim in the path analysis was to identify the weight
of fixed factors and also modifiable moderators of parent-
perceived child’s HRQL. In this model, we have followed
some of the constructs and definitions of Hoekstra-Weebers
et al. [27] in their very useful model of child and family
adaptation to an important illness. There are several
elements of our path analysis which show similarities to
other studies, link directly to the hospital experience and
routine, and point to the important of trust in the medical
care and the people participating in that care.
Parenting
Parental
perceptions of
Child Coping
Child Age
Trust in Medical staff
Parental
perceptions of
Child Adaptability
Parental
perceptions of
Child HRQL
0.50
0.21
0.37
-0.30
0.24
0.41
0.43
0.54
0.23
0.24
0.68
0.42
0.34
0.42
0.83
Fig. 1 Structural standardized
coefficients of hypothetical
model of path analysis
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Table 2 EFI-C dimensions of the path model with their respective items
Dimensions Items
Parenting the child in the hospital Creation of links between home and hospital
Use of strategies to help child cope with daily medical procedures
Level of trust about leaving the child with others during the day
Importance given by the parent about being next to the child during his/her sleep
Level of parent–child empathy
Perceived parental self-efficacy
Perceived ability in soothing child cry/desperation
Proximity to the child while soothing him/her
Perceived difficulties while taking care of the child during hospitalizations
Trust in the medical care and in the hospital
community
Level of trust in the hospital
Search for specific members of pediatric staff
Feelings of belonging to a community
Level of the appreciation for what is offered
Perceived emotional/psychological support from the clinic’s staff
Importance of the other support figures in the clinic (psychologists, teachers, volunteers)
Parental perceptions of child coping with procedures
and hospitalization
Acceptance/understanding of the explanations before medical procedures
Use of different strategies during medical procedures
Monitoring medical procedures
Need for parents before, during, or after medical procedures
Need for parents during daily life in the hospital
Level of adaptation to the hospital routines
Level of adaptation to daily restrictions related to illness
Requests for information/reassurance from doctors
Coping with painful procedures
Tolerance to movement restrictions
Level of acceptance of the possible physical changes
Coping with emotional stress
Parental perceptions of child HRQL in the hospital Level of child’s maintaining of contacts with peers, friends, schoolmates
Physical reaction to therapies
Level of participation to the play activities in the hospital
Level of child’s maintaining of some previous routines (sport and play activities)
Tolerance of possible collateral effects of therapies (nausea, vomit, headache, fatigue)
with associated fears and feelings
Child’s activities of maintaining some previous routines (ask for phone, to do homework)
Level of participation to the school activities in the hospital
Parental perceptions of child adaptability Level of child’s emotional intensity (crying, anger episodes) associated with specific
causes (medical procedures)
Sleeping problems
Level of child’s general curiosity and attention about the hospital environment related
with games and play
Level of child’s consolable capacity
Capacity of the child to become serene just after medical interventions
Parent’s perception about the quality of change in child’s relations with doctors and white
coats
Parent’s perception of a stability in child’s characteristics
Level of parent’s perception of sane aspects of the child in spite of the illness
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Firstly, developmental differences have been found in
several other studies: Particularly, older children use more
cognitively oriented coping methods (emotion-focused
coping, information seeking, problem solving), while
younger children use more active coping to change the
environment (approach, problem focused) [28]. Parents talk
of the ways in which children cope with their difficult
emotional situation (“She tends to shut down all the blinds.
She does not talk”,“Sometimes he wants me there with
him, but I must not talk. He is elaborating on, reflecting on
the experience”) and with the sudden change of their
everyday lives, including the restriction of choices and
movements (“She is not able to adapt. She knows that here
she must undergo therapies, be ill at ease, be linked to a
machine. She cannot do what she wants, move freely”).
Naturally, there is great variability along these issues often
linked not only to the children’s age but also to their
personalities and explicit efforts: “He stays in bed, but any
time he can, he gets up, plays. He also tries to talk with
other kids here”. Especially for the younger children, it is
necessary to take into consideration parents’description of
their children’s and their own behaviors to understand their
possible psychological reactions to the illness and to its
treatments [29].
Secondly, parents become very important for their
child’s health throughout the therapies because their
capacity for parenting helps the child to cope better with
the illness during the hospitalization [30,31]. For example,
the ways in which parents help children sustain links with
their previous lives (“He has heaps of friends who write.
We pin them to a large cardboard in his hospital room”) and
the degree by which children actively ask to be connected
to the external world (“There is a school mate in
particular…he wanted to call him while we were coming
here”) were very important themes in parents’narratives
about what made a positive change in the otherwise very
difficult routine they and their child now faced.
Thirdly, parental trust in their medical care team seems
to be a key element that sustains parental perceptions of
positive child’s HRQL during the first hospitalization:
Parents’capacity to accept this new life environment
(constituted by medical staff, volunteers, psychologists,
nurses, and hospital spaces) made a significant difference.
One mother said for example: “This is not a hospital, this is
a family!”These relationship connections and trust seemed
to allow parents to think that the child adapts better to the
hospitalization with relatively more positive HRQL.
Conclusion
This study provides an empirical model that has linked
several psychosocial and contextual variables useful to
maintain a positive quality of life in children with
leukemia in their first hospitalization. This study stressed
that the parental point of view on their children’sHRQL
is not only relevant in itself but it is also useful for the
clinical care of children with cancer which is provided
by health professionals. Parents may be good reporters of
child behaviors and can even give a reasonable proxy
report of child HRQL, but not only that. In this study,
they have been asked to give their point of view,
providing their own personal perspective, not only a
proxy for their child. This may be useful and valuable
because parents are the ones who often request medical
intervention for their child and make decisions. They
clearly report their own perceptions of child coping,
HRQL, and a range of adaptations, which are therefore
likely to be influenced by their own conceptualization of
the situation. A richer and more carefully assessed
knowledge of the parents’views and expectations on
their children’s HRQL during the first treatments for
pediatric leukemia may facilitate the communication
processes in the hospital and may help provide better
psychosocial care for the child during the first treatments
and likely throughout care.
Specific psychosocial programs can be devised
specifically during the first hospitalization directed
respectively to children with leukemia and to their
parents. Using the EFI-C narratives and items, care
providers can suggest specific interventions directed to
younger and less adaptable children, for example, or to
children with a more restricted range of coping
strategies. Other interventions can be directed to
support parents in their important role of parenting
children with cancer and in insuring and monitoring
their trust of the medical care and the hospital
community serving them.
In addition to providing these kinds of information to
assist parents, children, and professional staff, there is a
further benefit for doing the EFI-C type of conversational
interview. Many parents report some psychological benefit
frombeingabletotelltheirstorytoasympathetic,
interested listener guiding a conversation. Such structured
conversations with parents may lead to better ways to
organize psychosocial interventions in clinics and other
settings which can be tailored to parents’needs. Such
knowledge may also lead to a more profound sense of
respect and admiration for human parenting in the face of
threat, for its ingeniousness, its creativeness, and its
resilience and generosity.
Acknowledgments This work was supported by a grant from
Foundation “City of Hope”, and it was in memory of Professor Vanna
Axia.
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