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Year : 2017  |  Volume : 37  |  Issue : 1  |  Page : 1-6

Determination of caregiving burden of parents providing care to their children with epidermolysis bullosa

1 Department of Nursing, Faculty of Health Sciences, Harran University, Sanliurfa, Turkey
2 Department of Pediatric Nursing, Faculty of Health Sciences, Zirve University, Gaziantep, Turkey
3 Department of Nursing Management, Harran University, Sanliurfa, Turkey

Date of Submission05-Aug-2016
Date of Acceptance12-Dec-2016
Date of Web Publication2-Jun-2017

Correspondence Address:
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/1110-6530.207488

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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.
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.
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

How to cite this article:
Kahraman S, Çiftçi EK, Timuçin A. Determination of caregiving burden of parents providing care to their children with epidermolysis bullosa. Egypt J Dermatol Venerol 2017;37:1-6

How to cite this URL:
Kahraman S, Çiftçi EK, Timuçin A. Determination of caregiving burden of parents providing care to their children with epidermolysis bullosa. Egypt J Dermatol Venerol [serial online] 2017 [cited 2018 Jun 21];37:1-6. Available from: http://www.ejdv.eg.net/text.asp?2017/37/1/1/207488

  Introduction Top

Epidermolysis bullosa (EB) is a heterogeneous group of diseases that is rare and chronic, and in which blisters and erosions are formed in skin and mucous membranes with minimal trauma [1]. The disease is seen approximately with a rate of 8–19 out of a million [2]. In this disease, prenatal diagnosis is possible; however, some cases show the symptoms at the neonatal period, and some other cases are normal at birth and give clinical symptoms later. EB has no exact treatment, but supportive care and maintenance are applied [1]. Cases must be kept from traumas, and infections and erosion development must be prevented by topical agent application, skin must be moisturized, infections if any must be treated, genetic consultancy must be given to the family, and primary care must be 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. Caring is a multidimensional experience for the caring individuals, and it is not limited to one type of assistance. It involves emotional, physical, and financial assistance. In addition to positive outcomes, such as personal development, close relationship, getting satisfied, getting social assistance from others, and self-respect, caring could lead to many difficulties [4],[5],[6],[7],[8],[9],[10],[11]. Caring is considered as a parental responsibility and is given by families in our country. Hence, patient caring influences not only the patient but also the caring family members and relatives, and changes the roles of caring individuals toward caring [12],[13].

Caring burdens of caregivers to patients with EB have been investigated in a limited number of studies abroad and have been reported to be high [14],[15]. Some studies were conducted to identify the burden of caregivers 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 Top

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 Top

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.

As regards the eight children included in the study, two were sisters aged 5 and 7 years; two were siblings, a 8-year-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 children were diagnosed with EB after birth.

[Table 1] shows the children’s sociodemographic features. It was found out that half of the children were 3–5 years old and the rest of them were 6–9 years old; 62.5% of them were girls and 75% did not go to any kindergarten or school.
Table 1: Distribution of children’s sociodemographic features

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[Table 2] shows that six (75%) children were completely dependent and two (25%) needed help for eating, bathing, dressing, going to toilet, and walking. Hence, it was determined that all the children were dependent as either they did self-care with help of others or it was completely done by others.
Table 2: Self-caring skills of patients with epidermolysis bullosa

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[Table 3] displays the features of caregiving individuals. In the light of this data, 75% of the primary caregiving individuals were mothers and 25% of them were fathers. It was found out that 75% of the caregivers 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

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As shown in [Table 3], the family roles were affected for 75% of parents, and there was another individual to support the parent who said the family role was not affected. All four parents in the study had two children with EB, which increased the need for help. As shown in [Table 4], 50% of the individuals who provide primary care to children state that they have another individual to support them.
Table 4: Average score on the Zarit caregiving burden scale of the caregiving parents providing care to each child

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In this study, all caregiving parents stated that they were informed by the medical staff (doctor and/or nurse) about what EB was and how they were supposed to provide care. But, they also stated that the information given was not sufficient. They indicated that it was mainly about wound care, but completely theoretical and nothing practical.

As shown in [Table 4], the ZCBS score of caregiving parents of children with EB was 47.25, which is considered high. Children’s ZCBS score that 75% of them constituted high or excessive burden.

In [Table 5], parent’s caregiving burden scale scores were compared with child’s sex, age, caregiver’s sex, age, and education level, and no statistical difference was found (P>0.05). Statistical difference was found between parents receiving assistance with caring and caregiving burden score average (P<0.05), and it was determined that the ones who received assistance had lower scores.
Table 5: Caregiving burden scale scores with regard to caregiver’s and child’s sociodemographic features

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  Discussion Top

EB is a congenital, genetic, and vesiculobullous disease. It causes restrictions on physical abilities and changes in some specific daily activities. It also places different burdens and responsibilities on caregiving individuals at home or hospital. To lessen the caregiver’s burden, the primary thing to do is to determine the burden. Knowing and defining the burden helps in improving the quality of life for both caregivers and caretakers [5].

When the children who were included in the research were examined in terms of self-care abilities, it was determined that 75% of the children were completely dependent on things such as feeding, going to bathroom, walking, dressing, and bathing.

In the present study, which was carried out to define caregiving burden on caregivers of children with EB, the caregiving score was found to be high (47.25±11.81).

Skin symptoms of the disease are generally seen on body parts that suffer from trauma and in hot weather regions. It is predicted that, as the research was carried out in March and in a hot region, symptoms and caregivers’ burden will increase at times when the temperature rises up to 45°C.

In the literature, no study about caregiving burden on caregivers of children with EB in Turkey has been encountered. In a study carried out abroad, caregiving 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 caregivers of children with EB was similar to the burden on caregivers of cancer patients. In the study by Karahan and İslam [13], in which they compared caregiving burdens between caregivers of children with cerebral palsy and caregivers of old patients with hemiplegia, it was detected that caregiving burden score of caregivers of children with cerebral palsy was 40.7. In a study in which the burden on families with children with mental disabilities was examined, it was indicated that families with mentally challenged children suffered from emotional, social, financial, and physical overload [11]. In his study on families with children with Down’s syndrome, Sarı HY [20] found out that caregiving burden was of medium level . In another study carried out abroad, it was detected that mothers who had children with mental disabilities had significantly lower self-respect than did the controls because of extreme caring burden [21]. In this study, caring burden on caregivers was in agreement with that reported in the literature.

In several studies carried out with stroke patients who were completely dependent on others as they could not meet their physical needs, caregiving burden was found to be 33.02 in Turkey, and 28.33 and 28.32 in other two studies [6],[7],[22]. As it can be seen above, caregiving burden of patients with EB is significantly higher than that of stroke patients who are completely dependent on others. This shows the importance of support that caregivers of children with EB need. Besides the dependency about self-care, patients with EB need more help for wounds on their skin.

In the study, no statistically significant difference was detected between age, sex of child with EB, caregiver’s sex, education, caregiver parent’s age, and caregiver’s score obtained from the caregiving burden scale. A statistical significance was detected between caregiving parents receiving assistance to provide care to their children and the caregiving burden score: the ones who received assistance had lower burden.

In their study carried out with mothers of 202 children with and without disabilities, Erickson and Upshur [23] determined relevance between difficulty of caring, time spent on caring, and burden. They highlighted 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 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


Conflicts of interest

There are no conflicts of interest.

  References Top

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  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5]


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