成年血友病患對疾病、身體心像改變之困擾及因應行為

Distress Distribution and Coping Behaviors toward Disease and Body Image Change of the Adult Patients with Hemophilia

10.30072/JDR.200512.0003

毛新春(Hsin-Chun Mao)；葉麗娟(Li-Jen Yeh)；卓妙如(Miao-Ju Chwo)

因應行為 ； 困擾 ； 血友病 ； 身體心像 ； Body image ； Coping behavior ； Distress ； Hemophilia

身心障礙研究季刊

3卷4期（2005 / 12 / 01）

229 - 245

繁體中文

本研究目的為瞭解成年血友病患者，因疾病導致身體心像改變的困擾及其因應行為。以立意取樣選取30位成年血友病患為研究對象，採半結構深度訪談之資料收集法，平均訪談時間為90分鐘，將訪談錄音逐字轉寫成文字的訪談筆錄，以內容分析法分析、歸類並命名。研究結果顯示血友病患因疾病導致的困擾包括不確定性出血、疾病的醫療、輸注凝血因子、潛在性感染、遺傳、輟學及疾病認知不足；因身體心像改變導致(1)社會功能困擾包括人際互動、工作選擇、日常生活、婚姻及生育，(2)身體功能困擾包括身體活動與生理功能受限。血友病患對困擾的因應行為，分為確認、情緒、逃避、防護及順應五類；大多數的血友病患者會隱瞞其疾病，對其身體心像的改變則以疏離方式逃避，且以順其自然的心態來因應。本研究結果除可幫助臨床護理人員瞭解血友病患者的困擾問題及其因應行為，且可供醫護教育教學之參考，期能提昇血友病患者的醫療服務品質。

This study was designed to explore the distress and coping behavior of the adult patients with hemophilia for their disease and body image change. Thirty adult patients with hemophilia have been selected by purposive sampling and interviewed for 90 minutes each with semi-structure and in-depth interview. All interviews are tape recorded and verbally written in transcript. Based on the qualitative information, the themes and concepts of the patients were categorized by using content analysis. The results found that the distress of disease included bleeding, treatment, infection from transfusion of clotting factors, genetics, interruption of schooling and disease recognition. Body image change included social functions, body functions, body structure and body sensation. The coping behaviors included confirmed coping behavior, emotional coping behavior, protective coping behavior, adaptive coping behavior, and evasive coping behavior. The patients with hemophilia generally display a negative attitude and helpless emotion toward their disease and body image, use primarily concealment and refusal for evasion toward their disease distress, take preventive measures for health protection, and assume ”let the nature take its course” attitude as coping behavior. The results of this study can help health professionals understand the distress problems and needs of the patients with hemophilia. The recommendations proposed by the researchers aimed at decreasing the distress of the patients, and provide health authorities/medical care personnel with valuable reference to improve the quality of medical care for the patients with hemophilia.

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