A study on the lived experience of patients with hemophilia

혈우병 환자의 질병 경험 연구

This study was done to provide a firsthand description and analysis of phenomenological data of the singular, subjective and lived experience of patients with hemophilia. Sixe patients suffering from hemophilia were selected for this study. Data were collected from May to August, 1999 through in-depth interviews. The phenomenological method described by Colaizzi was used for the phenomenogical analysis of the data. After transcribing the recorded interview, the researchers read the data repeatedly to identify significant statements, restated them succinctly, and then formulated meanings, themes, theme clusters, and categories. The formulated meanings were grouped into six categories : fear, loneliness, frustration, sypmtoms of hemophilia, reception of support, and commitment. An exhaustive description of the experience of hemophilia can be deduced from this study. It is as follows: even though patients with hemophilia feel fear, loneliness and frustrations and suffer from symptoms of their disease such as bleeding, pain and functional disorders, they commit themselves to the maintenance of good health and enthusiastic life style with the help of support resources such as family members.