Volume 23, Issue 3 (Pajouhan Scientific Journal, Summer 2025)
Pajouhan Sci J 2025, 23(3): 228-236 |
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Esmaeili M, Mohammadi F, Cheragi F, Khazaei S, Sobhan M, Parvizi M M. Quality of Life of Parents of Children with Epidermolysis Bullosa: A Systematic Review. Pajouhan Sci J 2025; 23 (3) :228-236
URL: http://psj.umsha.ac.ir/article-1-1208-en.html
URL: http://psj.umsha.ac.ir/article-1-1208-en.html
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: (1009 Views)
Background and Objectives: Epidermolysis bullosa is a group of rare genetic disorders that cause 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 342 articles were identified. After removing 189 duplicates, the titles and abstracts of 153 articles were reviewed. Of these, 138 were excluded since they assessed different concepts in parents of children with epidermolysis bullosa and did not evaluate the parents' quality of life. Additionally, 2 articles were excluded due to the unavailability of full-text versions. Among the remaining 13 articles, 5 received a score of 4 stars according to the Newcastle-Ottawa Scale, indicating low study quality, and were thus excluded from this study. Ultimately, 8 articles remained for comprehensive review and analysis.
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 342 articles were identified. After removing 189 duplicates, the titles and abstracts of 153 articles were reviewed. Of these, 138 were excluded since they assessed different concepts in parents of children with epidermolysis bullosa and did not evaluate the parents' quality of life. Additionally, 2 articles were excluded due to the unavailability of full-text versions. Among the remaining 13 articles, 5 received a score of 4 stars according to the Newcastle-Ottawa Scale, indicating low study quality, and were thus excluded from this study. Ultimately, 8 articles remained for comprehensive review and analysis.
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 | Published: 2025/12/29
Received: 2025/06/1 | Accepted: 2025/08/17 | Published: 2025/12/29
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