The Life of Adolescent Patients with Complex Congenital Heart Disease

Abstract

Purpose: In the present study, an analysis of the life of adolescents with complex congenital heart disease (CHD) was done using grounded theory. Consideration was given to the socio-cultural context of Korea. Methods: After approval from the institutional review board of Y hospital, 12 patients ranging in age from 14 to 35 were recruited. Data were gathered using in-depth interviews. Theoretical sampling was performed until the concepts were saturated. Results: The results confirmed the life of adolescents with complex CHD as a 'journey to finding uniqueness of oneself as a person with CHD'. The life consisted of 3 stages. In the crisis stage, participants had a feeling of threat to self-existence, and made an effort to be the same as others. In the self-recognition stage, participants who had sufficient role-performance built self-esteem while those who did not fell into self-accusation. In the self-establishment stage, participants who reached sufficiency in independence and knowledge planned the future, whereas those who did not conformed to the realities of life. Conclusion: The results of present study provide help in understanding the experiences of adolescents with CHD and provide a basis for developing nursing intervention strategies for these patients.

Coping and Resilience of Adolescents With Congenital Heart Disease

“…4 Even when patients reach adolescence, Korean health providers tend to give information not to adolescents but to parents. 5 Therefore, adolescents with CHD have difficulty achieving autonomy and independently managing their disease. 5,37 In addition, in cultures influenced by Confucianism, such as Korea, the strong sense of paternalism must also be considered.…”

“…5 Therefore, adolescents with CHD have difficulty achieving autonomy and independently managing their disease. 5,37 In addition, in cultures influenced by Confucianism, such as Korea, the strong sense of paternalism must also be considered. In a survey, most Korean healthcare providers agreed that explanations for obtaining informed consent for adult patients are likely to be given not to the patients but to caregivers, and only 10 (6.9%) of 145 physicians gave information and obtained informed consent from the patients.…”

“…5 The positive group held the attitude that CHD was not a barrier but simply something to be lived with, whereas the other group had a pessimistic view and did not tend to make plans for the future. Those in the positive group showed resilience and tended to manage their disease by obtaining information and adhering to treatment.…”

“…These more resilient adolescents worked to solve problems in managing CHD and were inclined to use task-oriented coping. 5 However, because paternalistic attitudes still heavily influence healthcare dynamics in Korea, healthcare providers often tend to give information only to parents, withholding it from adolescents with disease. 24 Such cultural constraints make it difficult for adolescents with CHD to obtain sufficient knowledge of their condition and treatment plan to enable them to construct a coping strategy to overcome the adversity.…”

“…4 In addition, many Korean adolescents with CHD feel isolated and offended by the Korean cultural attitudes of discrimination toward the disabled. 5 Therefore, adolescents with CHD need to increase resilience in the face of such challenges to preserve their health and quality of life.…”