الفهرس 
IntroductionOnly 14 pages are availabe for public view
 |  | from | 241 |  |  |
| | | from | 241 | | |
Abstract
dolescents with CHD face challenges in relation to sociological and disease-specific factors as well as in terms of the health services they require. In the sociological domain, they can have life experiences of disease, poverty, powerlessness, and racism. The disease-specific domain comes from the fact that these Adolescents have insufficient access to primary healthcare and lack information about their condition. Finally, adolescents with congenital heart disease often experience a lack of health communication and a positive experience is emphasized in the challenges of the health service domain (Haynes et al., 2020).
An essential role of the CHN is the assessment of readiness of the adolescent to move out of the pediatric health care setting into adolescent health care. This needs to be a structured assessment of the knowledge that the adolescent needs to achieve independence in managing his or her congenital heart problem. This assessment can include a checklist of areas that the adolescent should know. The adolescent can then demonstrate his or her knowledge by explaining the condition of the heart with congenital heart diseases with the basic physiologic consequences of the disease (Skorton, 2016).
Summary
135
Aim of the study
This study aims to Assess Quality of life for adolescent with congenital heart diseases through:
• Assessing knowledge of adolescents with congenital heart diseases about congenital heart diseases.
• Assessing health needs of adolescents with congenital heart diseases.
• Assessing health problems of adolescents with congenital heart diseases.
• Assessing physical, social, and psychological aspects of quality of life for adolescent with congenital heart diseases.
Research Questions:
• What are health needs of adolescents with congenital heart diseases?
• What are health problems of adolescents with congenital heart diseases?
• What is the quality of life of adolescents with congenital heart disease?
• Is there a relation between health problems of adolescents with congenital heart diseases and their quality of life?
• Is there a relation between adolescents’ socio demographic characteristics and their knowledge about congenital heart diseases?
Summary
136
Research Setting
This study was conducted in the outpatient Cardiology clinics in Academy of Heart affiliated to Ain shams University Hospitals.as it is a university hospital which provide health care for all categories of population in all Egypt.
Subjects of study:
The average number of adolescents with congenital heart disease in the mentioned setting in (2019) was 417. A purposive sample of 200 adolescents were used in this study during according to the following formula: 𝑆𝑎𝑚𝑝𝑙𝑒 𝑆𝑖𝑧𝑒= 𝑍2×𝑃(1−𝑃)𝑒21 +𝑍2×𝑃(1−𝑃)𝑒2×𝑁
with the following criteria:
• Adolescents diagnosed with congenital heart disease (1-3) years ago.
• Their age ranged between 10 years and 19 years.
Summary
137
Tools of data collection: -
Two tools were used for data collection
Tool (I): Interviewing questionnaire sheet:
It was designed by the investigator in an Arabic language after reviewing the recent and related literatures and it consists of six parts:
Part I: Socio-Demographic characteristics of adolescents diagnosed with congenital heart disease (age, Gender, level of education, marital status, Occupation, residence, Income, family members and housing). (10 questions: Q1-Q10)
Part II: past and present medical history of the adolescents. This part was designed by the investigator to assess past and present medical history of the studied sample (Chronic disease, hospitalization, past surgeries, Smoking, current medical diagnosis, medical investigations, treatment received, follow up place and follow up scheduling). (11 questions: Q11-Q21)
Part III: adolescent’s knowledge regarding congenital heart diseases. This part was designed by the investigator to assess adolescent’s knowledge regarding congenital heart diseases (Meaning, causes, sign, symptoms, special diet,
Summary
138
diagnosis, complication, Treatment, and lifestyle). (12 questions: Q22-Q33)
Part IV: health needs of adolescents with congenital heart diseases. This part was adopted by the investigator from “Child and adolescent needs and strengths (CANS) manual: The NCTSN CANS comprehensive Version A Comprehensive Information Integration Tool for Children and Adolescents, August 2016” to assess health needs of adolescents with congenital heart diseases among the studied sample with three degrees (never, sometimes, and always). (24 questions: Q34-Q57)
Part V: health problems of adolescents with congenital heart diseases. This part was designed by the investigator to assess health problems of adolescents with congenital heart diseases among the studied sample with three degrees (Mild, Moderate, and Sever). (18 questions: Q58-Q75)
Part VI: Quality of life for adolescents with congenital heart disease questionnaire for assessing aspects of quality of life for adolescent with congenital heart diseases (physical, social, psychological) this part was adopted from (PedsQL™ Cardiac Module, JW Vami, Version 17, May 2017) (34 questions: Q76-Q109)