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98]

Original article 1

Determination of caregiving burden of parents providing care to

their children with epidermolysis bullosa
Selma Kahramana, Esra K. Çiftçib, Arzu Timuçinc
a
Department of Nursing, Faculty of Health
Sciences, Harran University, Sanliurfa,
b
Department of Pediatric Nursing, Faculty of
Health Sciences, Zirve University, Gaziantep,
Turkey, cDepartment of Nursing Management,
Harran University, Sanliurfa
Correspondence to Selma Kahraman, PhD, RN,
Department of Pediatric Nursing, Harran
University Faculty of Health Sciences, Sanliurfa,
6300, Turkey; Tel/fax: +90 414 318 3202;
e-mail: skahraman1308@gmail.com
This study was presented at the fifth National
and second International Mediterranean
Pediatric Nursing Congress; Ankara;
15–18 November 2015.
Received 5 August 2016
Accepted 12 December 2016
Egyptian Journal of Dermatology and
Venereology 2017, 37:1–6
Objective
This study was conducted to determine the caring burden of eight children with
epidermolysis bullosa (EB) and its affecting factors.
Patients and methods
The sample size of this descriptive study was eight children with EB and their
parents. The research data were obtained by going to the children’s homes and
giving them a personal descriptive information form and by using the Zarit
caregiving burden scale between 1 March and 30 March 2014. Data were then
evaluated by using the SPSS.
Results
A total of eight children with EB from four families, including two siblings in each
family, and their parents took part in this study. Half of the children were 3–5 years
old and the other half were 6–9; 62.5% were girls and 75% had not attended school
or nursery. The Zarit caregiving burden scale score of the caregiving parents was
47.25, which is considered to be advanced. In the present study, no statistical
relevance was found between parents’ score on the caregiving burden scale and
children’s sex and age, caregiver’s sex and age, and education level (P 0.05). A
statistical relevance was found between parents getting support in providing care
and the mean caregiving burden scores (P<0.05): ones who had support had lower
mean caregiving burden scores.
Conclusion
It was found that parents who provide care to their children with EB have advanced
caregiving burden and that having someone assisting them in providing care to
children who are dependent in terms of wound care and activities of daily living
reduces caregiving burden.

Keywords:
caring burden, child, epidermolysis bullosa, nursing
Egypt J Dermatol Venereol 37:1–6
© 2017 The Egyptian Society of Dermatology and Venereal Diseases
1110-6530

Caring is a multidimensional experience for the caring

Introduction
individuals, and it is not limited to one type of assistance.
Epidermolysis bullosa (EB) is a heterogeneous group of
It involves emotional, physical, and financial assistance.
diseases that is rare and chronic, and in which blisters
In addition to positive outcomes, such as personal
and erosions are formed in skin and mucous
development, close relationship, getting satisfied,
membranes with minimal trauma [1]. The disease is
getting social assistance from others, and self-respect,
seen approximately with a rate of 8–19 out of a million
caring could lead to many difficulties [4–11]. Caring is
[2]. In this disease, prenatal diagnosis is possible;
considered as a parental responsibility and is given by
however, some cases show the symptoms at the
families in our country. Hence, patient caring influences
neonatal period, and some other cases are normal at
not only the patient but also the caring family members
birth and give clinical symptoms later. EB has no exact
and relatives, and changes the roles of caring individuals
treatment, but supportive care and maintenance are
toward caring [12,13].
applied [1]. Cases must be kept from traumas, and
infections and erosion development must be prevented
Caring burdens of caregivers to patients with EB have
by topical agent application, skin must be moisturized,
been investigated in a limited number of studies abroad
infections if any must be treated, genetic consultancy
and have been reported to be high [14,15]. Some studies
must be given to the family, and primary care must be
were conducted to identify the burden of caregivers
given to the children [3].

Caring is a part of normal development for a child’s
parents. But this role could mean completely different
in the event of a disease in which the child experiences
functional constraints and long-term dependency.
This is an open access article distributed under the terms of the Creative
Commons Attribution-NonCommercial-ShareAlike 3.0 License, which
allows others to remix, tweak, and build upon the work
noncommercially, as long as the author is credited and the new
creations are licensed under the identical terms.

© 2017 Egyptian Journal of Dermatology and Venereology | Published by Wolters Kluwer - Medknow DOI: 10.4103/1110-6530.207488
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2 Egyptian Journal of Dermatology and Venereology, Vol. 37 No. 1, January-June 2017
for some chronic diseases (cerebral palsy, KOAH
(Cronic Obstructive Lung Disease), stroke, aging,
schizophrenia, Alzheimer’s disease, cancer, heart
disease, Parkinson’s disease, etc.) in Egypt. It is
reported that caregivers for stroke patients, who have
limited physical abilities and a high level of dependency,
have an increasing caring burden and encounter
difficulties in caring [10,16]. Prevalence of EB is
lower than that reported for other mentioned diseases,
but, because of its symptoms, the level of dependency is
high, and also caring burden for EB has not been
identified.
In addition to physical dependency, like other chronic
diseases, skin scars cause increasing burden on caregivers
in EB. In nursing care, dealing with the caring individuals
as well as patients and gathering data to identify the
problems of the caregiver are professional responsibilities
of a nurse. In this context, for effective nursing service, to
provide continuous caring and recognition of the disease
for the patient, it is important that the patient’s relatives
take the right decisions about caring, and plan and apply
themselves effectively to take responsibility together.
That nurses consider caring individuals holistically and
evaluate the caring burden on them influence the
well-being of both patients and caregivers positively. It
is necessary that nurses are aware of the difficult situation
of the caregiver at home, define the caregiving role,
and identify the skills of orientation to the changing
situation [17]. As caregiving responsibilities increase,
the caregiving–caretaking relationship could turn into a
long-term necessity that causes trouble in the caregiver’s
life, and that is one-way, dependent, and intense [18].
That nurses identify caregivers’ caring burden and the
factors that affect this burden is necessary to adopt a
correct approach. Moreover, the data gathered in this
study will be useful for future studies on this topic.
This study was carried out with the aim of identifying
caring burden and influencing factors of eight children
with EB in Şanlıurfa city center.
Patients and methods
Study design
The sample of this descriptive study comprised caring
parents of eight children with EB who had registered
with the Social Assistance and Solidarity Foundation
in Şanlıurfa district.
Ethical considerations
Approval from the Social Assistance and Solidarity
Foundation was obtained to conduct the study.
Moreover, the aim of the study was explained to the
caring parents and their consent was taken.
Data collection and procedure
Patients with EB applied to the foundation to get
financial support for treatment expenses and were
registered. The research was carried out by visiting
the patients’ homes between 1 March and 30 March
2014 in the light of these registrations. Survey forms
were filled in during these visits. Each visit was
∼30 min long.
Measurements and instruments
Data of this research were gathered through ‘self-
descriptive form’ (including sociodemographic traits,
health condition, child’s and parents’ sociodemographic
traits and health condition) and the ‘Zarit caregiving
burden scale’ (ZCBS).
The ZCBS was improved in 1985 by Zarit et al.
[19], and the validity and reliability study for
Turkish was implemented in 2006 by Özer et al.
[9] The scale can be filled in by caregivers
themselves or by answering researcher’s questions.
It includes 22 statements that identify the effect of
caregiving on the individual’s life. It evaluates
relationship between the caregiver and the patient,
caregiver’s health condition, his or her psychological
well-being, social life, and financial burden. All
questions in the survey are in the statement form,
and evaluation of ZCBS is calculated out of the total
score. As the score increases, the caregiving burden
also increases; the maximum score in the scale is 88
points [5,7]. Obtained results were evaluated as
follows: (0–20) no/little burden, (21–40) middle
level of burden, (41–60) high level of burden, and
(61–88) excessive burden [18].
Data analysis
Data obtained from the research were evaluated
using the SPSS (SPSS Statistical Package for the
Social Sciences) (version 16.0) software package,
and statistical analyses were carried out using
percentage, the χ2-test, Student’s t-test, the
Mann–Whitney U-test, and the Kruskal–Wallis
tests.
Results
The research was carried out to identify the caregiving
burden of parents who provide care to their children
with EB, and included eight children with EB from
four families, each of which had two children with the
disease, and their caregiving parents.
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Determination of caregiving burden Kahraman et al. 3

As regards the eight children included in the study, two indicated that it was mainly about wound care, but
were sisters aged 5 and 7 years; two were siblings, a 8-year- completely theoretical and nothing practical.
old boy and a 9-year-old girl; two brothers aged 4 and
9 years, and two brothers aged 3 and 5 years. All the As shown in Table 4, the ZCBS score of caregiving
children were diagnosed with EB after birth. parents of children with EB was 47.25, which is
considered high. Children’s ZCBS score that 75% of
Table 1 shows the children’s sociodemographic them constituted high or excessive burden.
features. It was found out that half of the children
were 3–5 years old and the rest of them were 6–9 years Table 2 Self-caring skills of patients with epidermolysis bullosa
old; 62.5% of them were girls and 75% did not go to any Self-caring skills n (%)
kindergarten or school. Feeding
With help of others 2 (25.0)
Table 2 shows that six (75%) children were completely Completely dependant 6 (75.0)
dependent and two (25%) needed help for eating, Bathing
With help of others 2 (25.0)
bathing, dressing, going to toilet, and walking.
Completely dependant 6 (75.0)
Hence, it was determined that all the children were
Dressing
dependent as either they did self-care with help of With help of others 2 (25.0)
others or it was completely done by others. Completely dependant 6 (75.0)
Going to bathroom
Table 3 displays the features of caregiving individuals. With help of others 2 (25.0)
In the light of this data, 75% of the primary caregiving Completely dependant 6 (75.0)
individuals were mothers and 25% of them were Walking
With help of others 5 (62.5)
fathers. It was found out that 75% of the caregivers
Completely dependant 3 (37.5)
were 24–29 years old and literate, and that 75% of the
families had lower incomes than their expenses and all
of them had social insurance. Table 3 Sociodemographic features of parents who provide
care to siblings with epidermolysis bullosa
As shown in Table 3, the family roles were affected Variables n (%)
for 75% of parents, and there was another individual Caregiver
to support the parent who said the family role Mother 3 (75.0)
was not affected. All four parents in the study had Father 1 (25.0)
two children with EB, which increased the need Age of caregiving parent
24–29 years old 3 (75.0)
for help. As shown in Table 4, 50% of the
45–46 years old 1 (25.0)
individuals who provide primary care to children
Education
state that they have another individual to support Literate 3 (75.0)
them. Primary school graduate 1 (25.0)
Financial status
In this study, all caregiving parents stated that they Income is lower than expense 3 (75.0)
were informed by the medical staff (doctor and/or Income is equal to expense 1 (25.0)
nurse) about what EB was and how they were Social insurance
SSK (Social Security Institution) 2 (50.0)
supposed to provide care. But, they also stated that
Green card 2 (50.0)
the information given was not sufficient. They
Whether it affects parent’s intrafamilial role
Yes 3 (75.0)
Table 1 Distribution of children’s sociodemographic features No 1 (25.0)
Variables n (%) Whether there is another individual to help
Yes 2 (50.0)
Children’s age
No 2 (50.0)
3–5 years old 4 (50.0)
6–9 years old 4 (50.0)
Children’s sex Table 4 Average score on the Zarit caregiving burden scale
Female 3 (37.5) of the caregiving parents providing care to each child
Male 5 (62.5) N Min–max Mean±SD
Whether they go to kindergarten or school
ZCBS 8 32–63 47.25±11.81
Yes 2 (25.0)
Max, maximum; min, minimum; ZCBS, Zarit caregiving burden
No 6 (75.0)
scale.
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4 Egyptian Journal of Dermatology and Venereology, Vol. 37 No. 1, January-June 2017

In Table 5, parent’s caregiving burden scale scores were caregivers’ burden will increase at times when the
compared with child’s sex, age, caregiver’s sex, age, and temperature rises up to 45°C.
education level, and no statistical difference was found
(P>0.05). Statistical difference was found between In the literature, no study about caregiving burden on
parents receiving assistance with caring and caregiving caregivers of children with EB in Turkey has been
burden score average (P<0.05), and it was determined encountered. In a study carried out abroad, caregiving
that the ones who received assistance had lower scores. burden on parents of EB patients was examined and it
was found to be extremely high [14,15]. In the study by
Tabolli et al. [14], it was detected that burden on
Discussion caregivers of children with EB was similar to the
EB is a congenital, genetic, and vesiculobullous disease. burden on caregivers of cancer patients. In the study
It causes restrictions on physical abilities and changes by Karahan and I ̇slam [13], in which they compared
in some specific daily activities. It also places different caregiving burdens between caregivers of children with
burdens and responsibilities on caregiving individuals cerebral palsy and caregivers of old patients with
at home or hospital. To lessen the caregiver’s burden, hemiplegia, it was detected that caregiving burden
the primary thing to do is to determine the burden. score of caregivers of children with cerebral palsy
Knowing and defining the burden helps in improving was 40.7. In a study in which the burden on families
the quality of life for both caregivers and caretakers [5]. with children with mental disabilities was examined, it
was indicated that families with mentally challenged
When the children who were included in the research children suffered from emotional, social, financial, and
were examined in terms of self-care abilities, it was physical overload [11]. In his study on families with
determined that 75% of the children were completely children with Down’s syndrome, Sarı HY [20] found
dependent on things such as feeding, going to out that caregiving burden was of medium level . In
bathroom, walking, dressing, and bathing. another study carried out abroad, it was detected that
mothers who had children with mental disabilities had
In the present study, which was carried out to define significantly lower self-respect than did the controls
caregiving burden on caregivers of children with EB, the because of extreme caring burden [21]. In this study,
caregiving score was found to be high (47.25±11.81). caring burden on caregivers was in agreement with that
reported in the literature.
Skin symptoms of the disease are generally seen on
body parts that suffer from trauma and in hot weather In several studies carried out with stroke patients who
regions. It is predicted that, as the research was carried were completely dependent on others as they could not
out in March and in a hot region, symptoms and meet their physical needs, caregiving burden was found
to be 33.02 in Turkey, and 28.33 and 28.32 in other
Table 5 Caregiving burden scale scores with regard to
two studies [6,7,22]. As it can be seen above, caregiving
caregiver’s and child’s sociodemographic features burden of patients with EB is significantly higher than
Variables Average ST U P that of stroke patients who are completely dependent
Child’s sex
on others. This shows the importance of support that
Female 37.6±9.81 −2.220 0.068 caregivers of children with EB need. Besides the
Male 53.0±9.27 dependency about self-care, patients with EB need
Age more help for wounds on their skin.
3–5 years old 50.7±15.10 0.818 0.445
6–9 years old 43.7±8.05 In the study, no statistically significant difference was
Caregiver detected between age, sex of child with EB, caregiver’s
Mother 46.6±13.9 −0.225 0.830 sex, education, caregiver parent’s age, and caregiver’s
Father 49.0±0.00 score obtained from the caregiving burden scale. A
Whether there is any assistance
statistical significance was detected between caregiving
Yes 38.5±7.50 3.173 0.019
parents receiving assistance to provide care to their
No 56.0±8.08
Caregiver’s education
children and the caregiving burden score: the ones who
Literate 49.0±0.00 0.225 0.830 received assistance had lower burden.
Primary school graduate 46.6±13.9
Caregiver’s age In their study carried out with mothers of 202 children
26 years old or younger 47.5±17.8 0.055 0.958 with and without disabilities, Erickson and Upshur
Older than 26 47.0±2.30 [23] determined relevance between difficulty of caring,
Averege ± ST = mean ± ss. time spent on caring, and burden. They highlighted
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that burden decreases as father assistance and social
support increase [23].
Providing care to a patient could be decided with regard
to sociocultural and financial status that the family
can provide to a professional caregiver. As a result of
insufficient financial conditions and sociocultural status of
the group taking part in this study, caring of the children
was undertaken by their parents. It was identified in the
study that 75% of parents who undertook the caring of
siblings with EB were mothers, and 25% of them were
fathers. It is known that mothers take the primary role in
caring for the children. In addition, in the studies carried
out, it was found that the majority of the caregivers were
women. In a study, it was detected that 82% of caregivers
who provided care to children with EB were women (their
mothers), and this is in agreement with the findings of our
study [14]. In a study by Raina et al. [11], carried out with
486 caregivers of children with SP, it was determined that
94.4% of the caregivers were women and 89.7% of these
caregivers were children’s mothers. The most important
reason why women are seen as more suitable for caring is
that the family chores may generally be considered as a
natural part of their work by the societies they live in.
In addition, it is stated that, because of character traits of
women, such as being more affectionate and sensitive,
they have the ability of having close and strong
relationships, and they handle the difficulties of caring
better compared with men [24]. Taking into
consideration that fathers are relatively less affected and
positioned farther than mothers in the process, it is
understood that it is important to encourage fathers to
take a closer part providing care [18].
In the literature, it is often stated that the caregiving
individual needs to be informed about the extent of care
that he or she provides to the patient. This need includes
several topics such as information and assistance about
the disease, physical treatment, relieving the patient,
what the expected symptoms are, why they happen
and how to control them, treatment regiments, future
conditions, patient’s emotional reactions, chores, and
social and financial sources. In this study, caregiving
parents stated that training that was provided by the
healthcare staff about providing care to their children
with the disease was insufficient and that the training
should include visual and practical aspects.
Caregiving may negatively affect the caregiving
individual’s health and well-being. Because of patient’s
continuous needs, the caregiver may suffer from physical
problems such as fatigue and exhaustion. Physical
exhaustion and caregiver’s breakdown may increase
depression and anxiety. Primary caregivers, who
Determination of caregiving burden Kahraman et al. 5
undertake providing care to the patient, face a lot of
difficulties in physical, emotional, social, financial, and
professional matters [25]. That caregivers provide a good
care to the diseased child is related primarily to that
they are healthy, predicted physical problems are
minimized, and they feel psychologically strong. That
caregivers have a huge caring burden will affect their
health negatively in these aspects. In the present study,
the findings of which show that assistance in caring
decreases caring burden, it was indicated that parents
need more practical knowledge.
In agreement with our results, it is important that the
extent of caregiving burden should be taken into
consideration while individuals who provide care to
patients with diseases such as EB, which are chronic,
progressive, causing function loss, and demanding
wound care continuously, are evaluated holistically. It
is suggested to define the factors affecting the caregiving
burden, to detect the caregiver’s needs, health conditions
and support sources, to plan attempts to lessen the
caregiving burden at office or home, and to carry out
extensive research and episodic monitoring that show the
effectiveness of these attempts.
Application of the results to practice
This study revealed several features about caregiving
burden on caregivers of patients with EB and the
increase in caregiving burden. Nurses could do effective
planning about decreasing caregiving burden by
evaluating the burden of the caregivers who provide
care to patients with EB, which involves repetitive skin
wounds and results in dependency on maintaining daily
activities. Effective and planned training of caregivers of
patients with EB about maintaining patients’ daily
activities and caring at home will both lessen the
burden of caregiving and provide continuity at
consultancy in caring patients between the nurse and
the caregiver, and supportive nursing services. On the
other hand, providing personalized supportive approach
to each caregiver by examining personal factors that effect
caregiving burden will reduce the caregiver’s burden.
Effective strategies for understanding these factors
should be improved to minimize the caregiver’s burden.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
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