晚發型遺傳性神經退化疾病家族的心理調適及決策衝突

Abstract

就晚發型遺傳性神經退化性疾病而言，因其具有不可治癒性及無法預防性的特點，在遺傳諮詢的相關研究探討上提供患者或其家族成員遺傳諮詢變成為一個相當艱鉅的課題，以往大都會著重在發生症狀前基因檢測的道德倫理相關議題，或檢測前後所引發的情緒上衝擊與障礙等問題。近年來則開始越來越重視患者極具有血緣關係之家屬可能會遭遇的心理衝擊。 本研究目的為瞭解晚發型遺傳性神經退化疾病家族的心理調適及醫療上的決策衝突，並探討相關影響因素，含個案基本屬性與疾病特性。採橫斷式調查性研究，對象為北部某醫學中心神經內科門診，以立意取樣方式所收集符合條件之個案，經個案同意後以結構試問卷訪談收集資料。結構試問卷包括：「個案基本資料」、「遺傳資訊的心理調適量表」、「決策衝突量表」。將所收集的資料以SPSS / Window15.0進行統計分析。 研究結果顯示家族具有晚發型遺傳性神經退化疾病之個案的心理調適狀況與醫療上決策衝突之間具顯著相關性。並推論往後在提供患有晚發型遺傳性神經退化疾病之患者及其家族成員遺傳諮詢時，所需加強關注、提供之知識訊息或支持，以減低其在面臨醫療行為時做出錯誤判斷抉擇或選擇逃避拒絕接受的情形發生。

To patients or their families with late-onset hereditary neurodegenerative disease, it is a difficulty course for genetic counseling, because of its incurable and no effective prevention. Previous studies have been focused on ethical of asymptom genetic test or emotional concerns. However, recent studies take more and more psychological impact of patients and their families seriously. The propose of this study was to analyze and investigate the psychological adaptation and decisional conflict of medical treatment in late-onset hereditary neurodegenerative disease family, and the correlation between client’s demographic data, and characteristic of the disease. The participants were recruited for this cross-sectional and correlational study, from a neurological department at a medical center in northern Taiwan, using purposive sampling. With informed consent, data were collected with structured questionnaires including demographic data, characteristic of the disease, psychological adaptation of genetic information scale, and decisional conflict scale. Data was analyzed using SPSS/Window 15.0. The result of this study indicated the correlation between psychological adaption and decisional conflict in late-onset hereditary neurodegenerative disease family. It is imperative to provide a quality genetic counseling or support to late-onset heredity neurodegenerative disease family, and to help client make necessary decisions and better adaptation.