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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

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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/1110-6530.207488

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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.

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