小腦萎縮症是罕見疾病中人數較多的一群,患者多數在成年以後才發病,如何面對罹病之後的生活,這方面的研究並不多。再者,國內對於罕見疾病的研究,針對情緒與物質方面的討論較多,但是對於資訊以及評價上的著墨較少,且對於小腦萎縮症缺乏全面性的討論。因此,本研究透過深度訪談6名小腦萎縮症患者,探詢罹病後所面對的衝擊(impact),除了自我調適(self-coping)之外,有哪些社會支持(social support)可以介入提供協助。採用Cohen and Syme 對社會支持功能的界定,將之區分物質(instrumental)、情緒(emotional)、資訊(informational),以及評價(appraisal)四個面向進行分項討論。研究結果可以從患者所面對罹病後的各種衝擊,看到滿足日常生活各項需求之不易;再從他們極盡所能的自我調適中,發現有限的社會支持格外重要,包括照顧者的協助、政府或民間單位的介入、機構的轉介、輔具的提供、無障礙環境的改善、病友間的支持、制度的保障、資訊的共享、醫療技術的進展,以及宣導與倡權的重視等等。因此,本研究建議增強訊息傳遞平台的可近性、成立專業醫療服務、提供家屬社會支持,以及增加社會對於小腦萎縮症疾病的瞭解。
Spinocerebellar Ataxia (SCA) is one kind of rare disorders, the majority of patients are onset in adulthood. But there is lack of a comprehensive research in how the patients to face their life. Therefore, this research through in-depth interviews six patients with SCA, probing the impact, self-coping, and social support. And will analyze in four aspects: instrumental, emotional, informational, and appraisal. The result from the various impacts patients face, difficult to meet the needs of everyday life, and doing all it can by self-coping. We found limited social support is particularly important. Therefore, this study suggests that enhanced messaging platform can be near nature, the establishment of professional medical services, provide the families of social support, as well as increasing SCA for understanding.