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العنوان
Burden of family caregivers of down syndrome children /
المؤلف
Alam El-Deen, Nadia Shaker Hassan.
هيئة الاعداد
باحث / نادية شاكر حسن علم الدين
مشرف / انجى عادل الوكيل
مشرف / عبدالهادي الجيلاني عبدالفتاح
مناقش / يحيى محمد وهبه
مناقش / محمد مجدي زيدان
الموضوع
Down syndrome. Family Health. Health - Quality of Life. Primary caregivers. Down Syndrome - child.
تاريخ النشر
2020.
عدد الصفحات
online resource (73 pages) :
اللغة
الإنجليزية
الدرجة
ماجستير
التخصص
طب الأطفال ، الفترة المحيطة بالولادة وصحة الطفل
تاريخ الإجازة
1/1/2020
مكان الإجازة
جامعة المنصورة - كلية الطب - قسم طب الأطفال
الفهرس
Only 14 pages are availabe for public view

from 92

from 92

Abstract

Background : Down syndrome (trisomy 21) is a genetic disorder caused by presence of a third copy of chromosome 21 and usually is associated with delayed developmental milestones, intellectual disability and characteristic physical and facial features. chronic diseases such as congenital heart defects, mental retardation, gastrointestinal anomalies, hematopoietic disorders and other medical disorders affect Down syndrome children caregiver’s life aspects and produce tiredness, isolation, distress and strain. Caregiver (CG) burden is the stress that CG perceives socially, emotionally and physically and the financial consequences that impair caregivers’ ability to provide the best care. The aim of the work: to assess the burden of Down syndrome children on their caregivers and their related risk factors. Subjects and Methods : Cross-sectional descriptive study was carried out in Mansoura University Children’s Hospital, Psychiatric outpatient clinic of Mansoura University Hospital and different charity health organizations of Mansoura City (such as Al Amal & Resala) throughout the year of 2019 and including 457 caregivers of Down syndrome children (from 1 year till 18 years old) using Zarit Burden Interview. Results: We found that the overall burden is 48.1% and the risk of burden is more frequently higher among female caregivers and single parent and Down syndrome female children, less than 6 years old and have congenital heart defects. Conclusion: Our study revealed that most of the caregivers of Down syndrome children are mothers, in advanced age group, with a stable marital relationship, without occupation, with moderate SES, have secondary educational level and live in rural areas. The burden of these caregivers is predominantly mild to severe. Most of Down syndrome Children are below 6 year old, not educated with chronic illness such as congenital heart defects and depend on their caregivers to perform their daily living activities.