Pajouhan Scientific Journal, Summer, In Press
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Mohanna Esmaeili1 
, Fateme Mohammadi *2 
, Fatemeh Cheragi3 , Salman Khazaei4 , Mohammadraza Sobhan5 , Mohammad Mahdi Parvizi6
, Fateme Mohammadi *2 , Fatemeh Cheragi3 , Salman Khazaei4 , Mohammadraza Sobhan5 , Mohammad Mahdi Parvizi6
1- Student Research Center, School of Nursing and Midwifery, Hamadan University of Medical Sciences, Hamadan, Iran
2- Department of Pediatric Nursing, School of Nursing and Midwifery, Mother and Child Care Research Center, Institute of Health Sciences and Technology, Hamadan University of Medical Sciences, Hamadan, Iran ,mohammadifateme47@yahoo.com
3- Department of Pediatric Nursing, School of Nursing and Midwifery, Chronic Diseases (Home Care) Research Center, Hamadan University of Medical Sciences, Hamadan, Iran
4- Department of Epidemiology, School of Health, Research Center for Health Sciences, Institute of Health Sciences and Technology, Hamadan University of Medical Sciences, Hamadan, Iran
5- Department of Dermatology, School of Medicine, Sina (Farshchian) Educational and Medical Center, Hamadan University of Medical Sciences, Hamadan, Iran
6- Molecular Dermatology Research Center, Shiraz University of Medical Science, Shiraz, Iran
2- Department of Pediatric Nursing, School of Nursing and Midwifery, Mother and Child Care Research Center, Institute of Health Sciences and Technology, Hamadan University of Medical Sciences, Hamadan, Iran ,
3- Department of Pediatric Nursing, School of Nursing and Midwifery, Chronic Diseases (Home Care) Research Center, Hamadan University of Medical Sciences, Hamadan, Iran
4- Department of Epidemiology, School of Health, Research Center for Health Sciences, Institute of Health Sciences and Technology, Hamadan University of Medical Sciences, Hamadan, Iran
5- Department of Dermatology, School of Medicine, Sina (Farshchian) Educational and Medical Center, Hamadan University of Medical Sciences, Hamadan, Iran
6- Molecular Dermatology Research Center, Shiraz University of Medical Science, Shiraz, Iran
Abstract: (76 Views)
Background and Objectives: Epidermolysis bullosa is a group of rare genetic disorders that lead to the formation of blisters on the skin and mucous membranes. This disease significantly impacts not only the affected child but also the parents, affecting their quality of life. Therefore, this study aims to determine the quality of life of parents with children suffering from epidermolysis bullosa.
Materials and Methods: In this systematic review, all observational studies published between 2013 and 2025 in Persian and English databases were collected and examined using the keywords related to quality of life, parents, and epidermolysis bullosa. After eliminating duplicate and irrelevant cases, the quality of studies was assessed using the Newcastle-Ottawa Scale.
Results: A total of 87 articles were identified, and after removing eight duplicate articles, the titles and abstracts of 79 articles were reviewed. Ten articles were excluded due to being reviews, and 46 articles were excluded for being irrelevant. Among these, 23 articles reached the full-text review stage, of which seven articles were excluded due to lack of full access and eight articles due to insufficient reporting, ultimately resulting in eight articles included in the study.
Conclusion: The presence of epidermolysis bullosa not only affects the quality of life of the affected children but also imposes significant physical, psychological, social, and economic burdens on their parents and families, collectively diminishing their overall quality of life.
Materials and Methods: In this systematic review, all observational studies published between 2013 and 2025 in Persian and English databases were collected and examined using the keywords related to quality of life, parents, and epidermolysis bullosa. After eliminating duplicate and irrelevant cases, the quality of studies was assessed using the Newcastle-Ottawa Scale.
Results: A total of 87 articles were identified, and after removing eight duplicate articles, the titles and abstracts of 79 articles were reviewed. Ten articles were excluded due to being reviews, and 46 articles were excluded for being irrelevant. Among these, 23 articles reached the full-text review stage, of which seven articles were excluded due to lack of full access and eight articles due to insufficient reporting, ultimately resulting in eight articles included in the study.
Conclusion: The presence of epidermolysis bullosa not only affects the quality of life of the affected children but also imposes significant physical, psychological, social, and economic burdens on their parents and families, collectively diminishing their overall quality of life.
Type of Study: Systematic Review Article |
Subject:
Psychology and Psychiatry
Received: 2025/06/1 | Accepted: 2025/08/17
Received: 2025/06/1 | Accepted: 2025/08/17
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