Introduction
The incidence of childhood cancer varies between 110
and 150 in a million for children under 15 years old.
Every year, approximately 7600 children are diagnosed
with cancer in the United States of America.[] With
reference to Pediatric Cancer records of Turkish Pediatric
Oncology Group (TPOG) and Turkish Society
of Pediatric Hematology (TSPH) in 2002-2009, 11.898
children were diagnosed, leukemia was on the first
rank with the rate of 32.4%, lymphomas was on the
second rank with the rate of 16.8%, and central nervous
system tumor was on the third rank with the rate
of 13.2% among these diagnoses.[]
Having a child with cancer is a very difficult experience
for parents. Parents attempting to manage the increasing
treatment burden of the child and the side effects
caused by cancer treatments completely focus on
the needs of the sick child generally by deferring their
own needs.[,] Parents undertake the tasks of learning
complicated treatment protocols, following up on
chemotherapy and its side effects, maintaining efficient
contact with healthcare personnel, and providing support
to other members of the family, in addition to the
sick child. Parents might also experience problems in
their relationships with their sick children, affecting
family experiences with other children and spouses.
[,] During this process, parents require information,
guidance, and support to facilitate decision making.[]
It is important and essential for healthcare professionals
to determine, meet, and follow up with the
needs of parents in the early period for the purpose
of preventing these psychological and psycho-social
problems.[] In the literature, it has been observed
that the needs of parents of children with cancer involve
the need for information, physical and emotional
needs, practical needs, and the need for financial support.[,] Parents need their questions to be answered,
to know about the procedures administered and have
knowledge about when expected side effects will occur.
[,] Monterosso (2008) stated that the information
needs of parents of children with cancer were not met
at a rate of 30-50%.[] A review of the Turkish literature
failed to show any studies undertaken to identify
the met and unmet needs of parents of children diagnosed
with cancer. Further, an assessment instrument
that could be used for this purpose was not available.
We undertook the translation of the English version of
the Family Inventory of Needs-Pediatric II questionnaire[] into Turkish, and then established the validity
and reliability of the revised instrument. This study
aimed to adapt to the Family Inventory of Needs-Pediatric
II (FIN-PED II) into the Turkish language and
investigate its validity and reliability for parents of children
with cancer.
Methods
Sample and Setting
A descriptive cross-sectional study was conducted to
adapt the Family Inventory of Needs-Pediatric II (FINPED
II) into the Turkish language and investigate its
validity and reliability to determine the needs of parents
of children with cancer. The population of this
study consisted of parents of children in the age group of 0-18 years old, followed up with diagnoses of leukemia,
solid tumor, or central nervous system tumor
between February 2015 and June 2015 in the pediatric
hematology and oncology unit and outpatient clinics
of Hacettepe University İhsan Doğramacı Children's
Hospital and Hacettepe University Oncology Hospital.
This study was conducted with 180 parents (leukemia
[n=60], solid tumor [n=60] and central nervous system
tumor [n=60]) who agreed to participate in this
study and were older than 18 years old. Parents who
had no communication problems, whose children were
followed up with diagnoses of leukemia, solid tumors,
or central nervous system tumors, and who agreed to
participate in this study were included.
Parent and Child Form
In this study, the data were collected using a data collection
form based on the relevant literature.[,,,]
This form involved variables, such as the parents" ages,
educational backgrounds, occupations, cohabitation
status, economic status, number of children, and places
of residence, as well as the age, gender, and diagnosis of
the ill child, the type of treatment, and the frequency
of hospitalization. The questionnaire and the inventory
were applied to the participants by the researchers
using face-to-face interview methods. Interviews with
the parents were conducted at times when they were
convenient and willing. A researcher (A.A) briefly informed
the participants about the questionnaire and
the inventory and explained to them how to complete
the forms.
Family Inventory of Needs-Pediatric II
This instrument was developed by Monterosso (2006).
The scale consists of 17 items and includes three rating
scales: "the importance of care needs", "met needs"
and "the need for further information". The first rating
scale of the scale measures the importance level
of care needs with a score ranging from 0 (not at all
important) to 4 (extremely important). The second
measures the degree of the met needs, and similarly,
each item has a score ranging from 0 (not met at all)
to 4 (completely met). The last evaluates the status of
further information, with a score ranging from 0 (no
further information is required) to 4 (a great deal of
information is still needed). Scores obtained from the
inventory ranged between 0 and 68. Validity and reliability
studies of the inventory were conducted in 85
parents of children who were in the age group of 0-19
years old and were diagnosed with solid tumors and
leukemia. The internal consistency of the rating scale "Importance of Care Needs" was 0.83, the internal consistency
of the rating scale "Met Needs" was 0.90, and
the internal consistency of the rating scale "The Need
for Further Information" was 0.98.[]
Analysis
Analyses were completed by transferring the data into
the IBM SPSS Statistics software program, version 22.
The number and percentage distributions were used
for the socio-demographic characteristics of the parents
and children. The level of significance was accepted
p<0.05. When testing the validity of the inventory,
exploratory factor analysis was applied, and Cronbach"s
Alpha coefficient was calculated for reliability analysis
upon valid results of the inventory. Linguistic equivalence
study was conducted to adapt the "Family Inventory
of Needs-Pediatric II", used in this study, into
Turkish. Within the scope of linguistic equivalence
study, support was received from an academic member,
who was specialized in the nursing field and had
language competency, and two linguists for translation
of the inventory from English into Turkish. Translation
appropriate for each item was determined by comparing
three scales to be translated into Turkish. The inventory,
which was assessed for Turkish compatibility,
was translated from Turkish into English by three linguists.
The inventory translated back into English was
compared with original inventory to determine if there
was any semantic change in statements and the Turkish
version of the inventory was finalized following the
comparison.
Ethical Considerations
Permission was obtained from the author to conduct a
validity and reliability study of the inventory in Turkey
via e-mail. The Author sent the inventory via an e-mail
to researchers. Ethics committee approval was received
from the Non-invasive Ethics Committee of Hacettepe
University (GO 15/151-10), and the permission was
obtained to conduct the study from hospitals. Written
consent was obtained from each participant included
in this study.
Results
Table 1 shows some characteristics of the parents and
their children. 72.8% (n=131) of the parents were
women, the majority of them (n=52, 28.9%) were in
the age range of 31-35 years and graduated from high
school/university (n=85, 47.2%). In this study, 74.4%
(n=134) of the parents were unemployed, and they (n=98, 54.4%) described their economic status as moderate.
61.7% (n=111) of the children with cancer included
in this study were boys. When the age distribution of
the children was examined, it was observed that there
were 22.8% of the children three years old and younger,
45.6% were aged between 4-9 years, and 31.7% were
aged between 10-19 years. Most of the children received
chemotherapy (n=152, 84.4%) and were diagnosed one
year before or in a shorter time (n=120, 66.7%).
Table 1: Demographic characteristics of parents and
children
Construct Validity (Exploratory Factor Analysis) for
FIN-PED and Internal Consistency of the Inventory
(Cronbach's Alpha)
Exploratory factor analysis was used to test the construct
validity of the FIN-PED, consisting of 17 items
over 180 parents. Accordingly, as a result of the KMO
test, 180 parents were determined to be sufficient to
test construct validity for sections importance, the
need fulfillment, and the need for further information
(KMO>0.50). As a result of Bartlett's Test of Sphericity,
results of exploratory factor analysis were observed to
be useable for sections of importance, the need fulfillment,
and the need for further information (p<0.05).
As a result of exploratory factor analysis, it was observed
that percentages of explaining total variance
were 74.787%, 68.649%, and 72.746% for sections of
importance, the need fulfillment, and the need for further
information, respectively. Percentages of explaining
total variance were at a very high level (>%50). Accordingly,
it was observed that 17 questions used for
sections of importance, the need fulfillment, and the
need for further information were in coherence and
they had high levels of correlation between them. Consequently,
the construct validity of FIN-PED was ensured.
Table 2 shows Cronbach's Alpha of FIN-PED II. As
a result of Cronbach's Alpha reliability analysis, reliabilities
of sections of importance, the need fulfillment,
and the need for further information for FIN-PED
were observed as 0.814, 0.906, and 0.915, respectively.
Accordingly, these sections were highly reliable. The
internal consistency of FIN-PED was ensured.
Table 2: Cronbach's alpha of FIN-PED II
Discussion
This study supports FIN-PED II as an effective tool
for measuring of the care needs of parents of children
with cancer as well as established studies about the reliability
and content validity of FIN-PED II.[,,,]
This study provided a tool about the needs of parents
of children with cancer, which is a topic that has not
previously been studied in Turkey. The met and unmet
needs of the parents can be determined by studying the
validity and reliability of a recent version of FIN-PED
II. Initial psychometric testing of the Turkish version
of the FIN-PED II showed significant results as well as
each of its subscales. Internal consistencies were found
in this study (.81, .90, and .91) were similar to other
studies (.83, .90, and .98 in Monterosso et al., 2006 [];
.94 for the both subscales obtained Whiteley et al., 1999
[]; .84, .90, and .89 in Arabiat and Altamimi 2013 [];
.84, .91 and .88 in Arabiat et al., 2015).
It was determined in the present study that the needs
of the parents of children with cancer to know about the
treatment, side effects, prognoses, and how to provide
care to their child at home and to be informed by healthcare
personnel in understandable language and the needs
of child to ask questions easily were most important. Previous
studies have revealed that parents had the need for
information about the diagnosis of their child and his or
her treatment, diagnostic procedures, and coping with
treatment processes expected side effects, prognosis, and
daily care. [-] Within this context, the present study
supported the results from the literature. It is important
to evaluate the needs of parents, to maintain the treatment
regime of the child, to realize the clinical picture,
which might go unnoticed, to become involved in the
child"s medical care, and to decide concerning preventing
the results that can cause parents to experience emotional,
social and financial difficulties.[]
The Turkish version of FIN-PED II represents the
first step to developing a clinically efficient tool to identify
the care needs of parents of children with cancer
in Turkey. The second step of this process can be developed
optimized health area for the care needs of
parents of children with cancer by using outcomes of
FIN-PED II. The FIN-PED II can be provided to apply
effective nursing interventions about carrying out care
and unmet needs of parents of children with cancer.
Conclusion
To our knowledge, this is the first study to measure the
Turkish version of FIN-PED II for psychometric quality. The results show that the Turkish version of FINPED
II has acceptable psychometric qualities, which
suggests its applicability to assess the care needs of parents
during their child"s treatment for cancer in Turkey.
Peer-review: Externally peer-reviewed.
Conflict of Interest: No conflict of interest.
Financial Support: None declared.
Authorship contributions: Concept - H.B., A.A., L.M.;
Design - H.B., A.A.; Supervision - H.B., A.A., L.M.; Materials
- H.B., A.A.; Data collection &/or processing - H.B.,
A.A.; Analysis and/or interpretation - H.B., A.A., L.M; Literature
search - H.B., A.A.; Writing - H.B., A.A.; Critical review
- H.B., A.A., L.M.
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