Young adults experiences of living with congenital heart disease

Abstract

Background Advances in care have improved the longevity and quality of life for children with congenital heart disease; however, many of them need lifelong highly qualified specialist care. The cardiac lesion involved may not always be the patient's main problem; issues related to quality of life may dominate. Aim To explore and gain a deeper understanding of young adults´ experiences of living with congenital heart disease in order to enhance the quality of care provided by the health care system. Method Transcribed in-depth interviews were analysed using a phenomenological–hermeneutic method. Six adults with congenital heart disease, aged 22–39 years old, were included in the study. Results Analyses yielded two themes, having the disease and living with illness, both originating from the main theme of ambivalence. The interviewees were ambivalent in how they viewed themselves, how they faced their daily life and how they dealt with their encounters with the health care system. They had to strike a balance between being different and not being different; being sick and being healthy; revealing their congenital heart disease or hiding it and living with a hidden handicap. They also had to cope with the disease and with the health care system. Conclusion Young adults with congenital heart disease are ambivalent. They have a strong wish to be healthy and they might hide their symptoms from the healthcare personnel and sometimes even from themselves. A psychosocial preparedness when meeting these patients is necessary.