Comparison of coping strategy and disease knowledge in dyads of parents and their adolescent with congenital heart disease

BACKGROUND: 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. OBJECTIVES: The purpose of this study was to evaluate and compare adolescent patients' and their parents' coping strategies and knowledge of congenital heart disease. METHODS: 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. RESULTS: 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). CONCLUSION: 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.ope