Lived experiences of adult patients with moyamoya disease: A qualitative case study

Aim: To understand the daily lived experiences of adult moyamoya disease patients. Methods: This qualitative study involved a purposive sample of 14 adult moyamoya disease patients diagnosed after 19 years or older at one university hospital in Seoul. Interviews conducted with patients included open-ended questions about the experience of living with moyamoya disease. The data were analyzed using Colaizzi's seven-step method, which derives the theme. Results: Participants' experiences were divided into three themes and eight sub-themes. “Having an unexpected disease that suddenly struck my life” refers to confusion and depression due to the diagnosis of the unexpected illness; “being occasionally anxious about the illness” describes patients' uncertainty about the disease and worrying about passing the disease on to their child; and “living with the disease by going through the disease experience” refers to the process of accepting and adapting to the illness. Conclusions: The findings provide a better understanding of the life changes and lived experiences of adult patients with moyamoya disease. Nurses should consider various aspects when providing care to adult moyamoya disease patients.