Ahn Jeong-Ah, Lee Sunhee, Choi Jae Young
Jeong-Ah Ahn, PhD, RN Researcher, College of Nursing, the Catholic University of Korea, Seoul. Sunhee Lee, PhD, RN Assistant Professor, College of Nursing, the Catholic University of Korea, Seoul. Jae Young Choi, MD, PhD Division of Pediatric Cardiology, Severance Cardiovascular Hospital, Yonsei University Health System, Seoul, Korea.
J Cardiovasc Nurs. 2014 Nov-Dec;29(6):508-16. doi: 10.1097/JCN.0000000000000090.
Adolescents with congenital heart disease adopt their illness as a part of their lives using their own knowledge and coping strategies. Those who use task-oriented coping strategies, such as relying on education to obtain sufficient disease-related knowledge, demonstrate much higher resilience. However, most health providers tend to provide information about congenital heart disease mainly to the parents instead of the child, and many parents tend to be uncomfortable talking about the disease with their child.
The purpose of this study was to evaluate and compare adolescent patients' and their parents' coping strategies and knowledge of congenital heart disease.
A descriptive and exploratory study design was used. After approval of the institutional review board was obtained, 40 adolescents with congenital heart disease and their parents were recruited from a congenital heart clinic between October 2012 and February 2013. We assessed the coping strategies and disease-related knowledge of both the adolescent patients and their parents.
The knowledge level of adolescent patients and their parents had significant gaps between categories, and parents presented with significantly higher knowledge than their adolescents did (P < .01). Parents reported significantly higher mean scores on task-oriented and emotion-oriented coping than their adolescents did (P < .001). In addition, both adolescents and parents of a religious background reported significantly higher scores on emotion-oriented coping than did those who did not report a religion (P < .05).
It is essential for healthcare providers to understand the ways in which adolescents and their parents cope with stress as well as the degree of their knowledge to better explicate the process of adaptation to the illness. Therefore, it is critical to develop effective structured and continuous intervention programs not only for adolescent patients and but also for their parents to enhance coping and knowledge of lifelong congenital heart disease.
患有先天性心脏病的青少年会运用自身的知识和应对策略，将疾病融入其生活。那些采用任务导向型应对策略的青少年，比如依靠教育获取足够的疾病相关知识，展现出更强的适应能力。然而，大多数医疗服务提供者倾向于主要向家长而非孩子提供有关先天性心脏病的信息，而且许多家长在与孩子谈论该疾病时往往会感到不自在。
本研究旨在评估和比较青少年患者及其父母应对先天性心脏病的策略和知识。
采用描述性和探索性研究设计。在获得机构审查委员会批准后，于2012年10月至2013年2月期间，从一家先天性心脏病诊所招募了40名患有先天性心脏病的青少年及其父母。我们评估了青少年患者及其父母的应对策略和疾病相关知识。
青少年患者及其父母在各类知识水平上存在显著差距，且父母的知识水平显著高于其子女（P <.01）。父母在任务导向型和情绪导向型应对方面的平均得分显著高于其子女（P <.001）。此外，有宗教背景的青少年及其父母在情绪导向型应对方面的得分显著高于无宗教背景者（P <.05）。
医疗服务提供者必须了解青少年及其父母应对压力的方式以及他们的知识程度，以便更好地阐明适应疾病的过程。因此，开发有效的结构化和持续性干预项目至关重要，不仅要针对青少年患者，还要针对其父母，以增强应对能力和对终身先天性心脏病的了解。
