What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients.

BACKGROUND: Adults with congenital heart disease constitute a relatively new and continuously growing patient population. In addition to medical problems, patients perceive specific psychosocial concerns that influence their lived experiences and quality of life. AIM: This study aimed to explore the lived experiences of adult congenital heart disease patients. METHODS: Unstructured, in-depth interviews were performed with 12 patients, aged between 25 and 40 years and suffering from moderate or severe heart defect (tetralogy of Fallot, transposition of the great arteries). Interviews were tape recorded and transcribed verbatim. Data were analyzed using Grounded Theory procedures. RESULTS: Feeling different was the central theme of the patients' lived experience, as they are faced with physical limitations and visible signs due to the heart defect. The experienced discordance between their world and healthy individuals' world implies that patients struggle constantly with themselves and with their environment to be accepted as normal. The feeling of being different was influenced by attitudes of the environment, health care, and patient's personality. Moreover, it determined the perceived impact of the disease on the patient's daily life. CONCLUSION: This study shows that normalisation is the most important process when dealing with patients suffering from a congenital heart disease.