Experiences of Marfan Syndrome Patients with a History of Cardiovascular Surgery

Abstract

Objective: To uncover the experiences of Marfan syndrome patients with a history of cardiovascular surgery as they go about their lives.

Method: Six Marfan syndrome patients with a history of cardiovascular surgery participated in a semi-structured interview, and their responses were analyzed using the qualitative synthesis method (i.e. the KJ Method).

Results: Eight major symbolmarks were extracted from the interview data: “Withstanding feelings of dread about sudden death by ignoring them”, “Bottling up the inferiority complex-like thought pattern that I am different from others”, “Trying to avoid thinking about the disease, because it cannot be changed even with great effort”, “Cherishing life as a result of experiencing surgery, as well as the death of someone close to me”, “Feeling pangs of conscience towards my drive to marry/have kids and to a family who will not leave my side”, “After overcoming various hardships, being now able to believe that I can manage living with the disease”, “Hoping for society’s understanding and the robust provision of medical care and social security”, “Interacting with other Marfan syndrome patients acts as support for me, even though the information I get can sometimes make me anxious”.

Conclusion: While considering the innermost emotion and thought of the patient, the importance of genetic nursing, assistance to enhance the self-care abilities, and the need for the development of a medical care environment were suggested.