Zagazig University Digital Repository
Home
Thesis & Publications
All Contents
Publications
Thesis
Graduation Projects
Research Area
Research Area Reports
Search by Research Area
Universities Thesis
ACADEMIC Links
ACADEMIC RESEARCH
Zagazig University Authors
Africa Research Statistics
Google Scholar
Research Gate
Researcher ID
CrossRef
Phenylketonuria, Mucopolysaccharidosis and Gaucher Diseases Mothers’ Lived Experiences: A Phenomenon Study
Faculty
Nursing
Year:
2024
Type of Publication:
ZU Hosted
Pages:
Authors:
Journal:
African Journal of Biological Sciences institute for advanced studies(south africa0
Volume:
Keywords :
Phenylketonuria, Mucopolysaccharidosis , Gaucher Diseases Mothers’ Lived Experiences:
Abstract:
Abstract: Background: Inborn errors of metabolism are a heterogeneous group of disorders that have many sequels. Mothers of these children are living various experiences which need many studies and explanations. The aim of the study: This study aimed to explore the lived experiences of mothers caring for children with some inborn errors of metabolism like phenylketonuria, gauche disease, and mucopolysaccharidoses. Methods: Interpretive phenomenological analysis using Braun & Clarke approach that provides a six- phase guide and data were gathered using semi-structured interviews and the interviews were audio recorded. Setting: The study was conducted at the Pediatric Metabolic, and Genetic Unit at Zagazig University Hospitals. Participants:A purposive sample composed of 21 mothers whose children suffer from (10 Phenylketonuria, 5 Mucopolysaccharidoses, and 6 Gaucher Disease). Results: The six final themes were revealed from exploring mothers' experiences including the complexity of the diagnosis process, seeking understanding, coping with the disease effects, perceived social support, concerns for the future, and access to the health care services. Conclusion: Inborn errors of metabolism had heavy social, psychological, and financial burdens on all family members. However, this study found that mothers were most affected by psychological issues, particularly isolation. Recommendation: it is become essential to develop programs for helping mothers of children with inborn errors of metabolism to reduce the burden of these diseases on mothers and consequently the children and the whole family Keywords: Lived experiences, Mothers, Children, and Inborn errors of metabolism
Author Related Publications
Department Related Publications
Samah Elawady Abosarkh, "تقييم جودة حياة اطفال سن المدارس المصابين بانيميا البحر المتوسط فى مدينة الزقازيق Quality of Life of School Age Thalassemic Children at Zagazig City", نشر بمجلة العلوم الامريكية, 2011
More
Samah Elawady Abosarkh, "Mother ’s Satisfaction with the Quality Care of Maternal and Child Health Services at Maternal and Child Health Centers in Zagazig City, Sharkia Governorate, Egypt رضاء الامهات بجودة الرعاية الصحية فى مراكز الصحة للامومة والطفولة بم", نشر بمجلة علوم الحياة المجلدالتاسع, 2012
More
Shimaa Mansour Musttafa , "تأثير استخدام التدليك فى تخفيف الام ما بعد العمليات الجراحية فى مرحلة الطفولة بمستشفيات جامعة الزقازيق.", Egyptian Nursing Journal, 2015., 2015
More
Amerat Ali Alsabeely, "Effectiveness of Intervention Guidelines on Mothers of Children with Attention Deficit Hyperactivity Disorders", Egyptian Journal of Health Care, 2023
More
Heba Abdallah Abdelnabi, "The Expected Outcomes of Nursing Care Provided to Children on Mechanical Ventilation", 2024
More
جامعة المنصورة
جامعة الاسكندرية
جامعة القاهرة
جامعة سوهاج
جامعة الفيوم
جامعة بنها
جامعة دمياط
جامعة بورسعيد
جامعة حلوان
جامعة السويس
شراقوة
جامعة المنيا
جامعة دمنهور
جامعة المنوفية
جامعة أسوان
جامعة جنوب الوادى
جامعة قناة السويس
جامعة عين شمس
جامعة أسيوط
جامعة كفر الشيخ
جامعة السادات
جامعة طنطا
جامعة بنى سويف