小腦萎縮症患者的資訊性社會支持網絡

Informational Social Support Network for the Spinocerebellar Ataxia

目的：小腦萎縮症屬於遺傳性的罕見疾病，好發於成年階段。本文檢視患者透過社會網絡獲取相關資訊支持的模式。方法：混合研究的第一階段採取深度訪談獲取患者的主觀經驗，第二階段採用修正式德菲法建構評估工具，最後則是前測結果的初步分析。發現：所需要的相關資訊包含病程、治療、照顧、社會福利，以及緩和安寧療護五項。獲取社會支持的主要管道依序為醫護人員、病友、社會機構、政府單位，以及親戚。結論：罕見疾病屬於較為冷門又專業的領域，醫療人員的資訊較具影響力，病友之間的經驗分享與支持成為生活世界的重要參考。

Objective: Spinocerebellar ataxia is a rare genetic disease that often occurs in adult-hood. The article explored patient-centric model that can obtain informational support from social networks to face the uncertain situations. Methods: In the first phase of the mixed methodology design, the subjective experience of patients was obtained through in-depth interview, the second phase used the modified Delphi method to construct questionnaire, and the last was pretest analysis. Results: The relevant information needed includes five items: the course of illness, treatment, caregiving, social welfare, and palliative care. The main channels for obtaining social support are medical staff, patients, social organizations, government units, and relatives in order. Conclusion: Rare diseases belong to a relatively unpopular and professional field. Therefore medical personnel's information is more influential. But the sharing of experiences and support among patients has become an important reference.