透納氏症候群青少女家庭參與疾病照護之關注內容及因應行為

The Concerns and Coping Behaviors of Families Caring for Their Turner Syndrome Teenagers

本研究係以質性研究深入探討透納氏症候群（Turner syndrome）青少女家庭參與疾病照護之關注內容及因應行為。研究對象為六個 透納氏家庭，研究方法係以田野研究法（fieldmethod），採觀察者暨參與者的方法，以遺傳諮詢護理人員身份於第一次進入門診就醫後至家庭轉介至相關基金會為止。研究者將透納氏症候群青少女家庭所表現出來的語言及非語言行為，於離開後8小時之內完成行為過程紀錄並以內容分析法進行比較與歸類，其結果如下：（一）家庭參與疾病照護之關注內容；（二）家庭參與疾病因應行為。此研究結果有助於護理人員及遺傳疾病相關人員，可以更深入的了解家庭在育有透納氏症候群青少女時，家庭各系統與環境、社會文化間的微妙關係，而能真正的融入了解家庭的經驗，以達能確實提供以家庭為照護中心的優良照護品質。

The purpose of this qualitative study was to explore the concerns and coping behaviors of families who were providing care for their teenaged Turner syndrome children. The researcher collected data on the selected families while acting as an outpatient nurseconsultant. In her dual role as observer-participant, she was able to elicit information regarding the families’ primary concerns and their coping behaviors. The researcher conducted a minimum of four interviews with each family and then used content analysis techniques to categorize specific aspects of the interviewees’ verbal responses. Two themes within the Turner syndrome families were identified and categorized. These were firstly, family concerns and secondly, coping behaviors. It is hoped that these results will help nurses and patients with genetic diseases to better understand the strengths and weaknesses of the relationships within families, particularly those families that are providing care for teenaged Turner syndrome children.