AUTHOR=Tye Sue Kiat , Kandavello Geetha , Wan Ahmadul Badwi Syarifah Azizah , Abdul Majid Hariyati Sharima 

TITLE=Challenges for Adolescents With Congenital Heart Defects/Chronic Rheumatic Heart Disease and What They Need: Perspectives From Patients, Parents and Health Care Providers at the Institut Jantung Negara (National Heart Institute), Malaysia

JOURNAL=Frontiers in Psychology

VOLUME=Volume 11 - 2020

YEAR=2021

URL=https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2020.481176

DOI=10.3389/fpsyg.2020.481176

ISSN=1664-1078

ABSTRACT=Objectives: To describe the experiences and challenges faced by adolescents with moderate	3
and severe congenital heart defects (CHD) / Chronic Rheumatic Heart Disease (CRHD) and to	4
determine the needs for the development of Adolescent Transition  Psychoeducational Program.	5
Methods: Seven adolescents with moderate to severe CHD/ CRHD, six parents and four health	6
care providers in Institute Jantung Negara (National Heart Institute) were invited for a semi-structure	7
interview. The qualitative data was analyzed by using Atlas.ti 7 program using triangulation	8
methods.	9
Results/conclusions:  Five themes  of adolescents’  experience and  challenges related to	10
(1)  emotional /  psychological  issues,   (2)  progress  of  illness,   (3)  relationship issues,  (4)	11
future preparation, and (5) school and community, were identified together with their eleven	12
categories. The staffs expressed their support towards the development of Adolescent Transition	13
Psychoeducational Program and these adolescents with CHD/ CRHD and their parents claimed	14
that they were willing to participate in the program if their schedule allowed. Their suggestion for the elements to be included into the program were classified into two themes, which are (1) self-  16
management on illness and life and future and (2) social supports together with four categories. In	17
conclusion, the findings from the current situation analysis acts as a basis for conceptual framework	18
in developing the Adolescent Transition Psychoeducational Program, in order to empower the	19
adolescents with CHD/ CRHD to manage their challenges during the transition phase towards	20
adulthood.