小腦萎縮症患者屬於罕見疾病患者中人數較多的一群，但在社會科學領域之中，相關研究以質性研究為主且為數不多。因此，本研究針對小腦萎縮症患者的社會支持網絡設計評估工具，並透過專家學者的意見進行修訂，藉以取得專家效度，期望可以使用此工具來了解患者的社會支持網絡的類型與來源。為了解評估工具是否能符合小腦萎縮症患者的處境，在建構評估工具的過程中，首先在初稿完成時邀請3位專家進行評估並修正。修正之後，採用修正式德菲法，邀請12位專家學者針對評估工具進行第一次意見回覆，經過一個月後再將修正後之工具邀請同一批專家學者進行第二次意見回覆，以獲得評估工具的專家效度。結果顯示多數專家學者認可本工具對於社會支持分類的完整性、正確性、清楚性、簡潔性，並認同各項社會支持的因素界定。最後再藉由滾雪球取樣法取得5位小腦萎縮症患者進行評估工具的前測，了解患者的社會支持的類型與來源。期待此社會支持評估工具可供實務工作參考與運用，未來若能加入特定專業與領域之知識，成為精確且深化的評估工具，作為各類型專業人員的對話平台，藉以規劃介入服務之計劃。Spinocerebellar ataxia patients are the large number of the rare disorders, but there are not many relevant researchesin the field of social science and most of themare qualitative research. Therefore, this study focused on establishing assessment instruments of social support network with patients of Spinocerebellar ataxia, and was revised by experts and scholars in order to obtain expert validity, hoping this instrument can be used to understand the types and source of the patient''s social support network. In order to understand whether the assessment instrument is in line with the situation of patients with Spinocerebellar ataxia, three experts are invited to evaluate and correct at the completion of the first draft in the process of constructing the assessment instrument. After the amendment, using modified Delphi method, twelve experts and scholars were invited to the assessment instrument of the first reply. A month later, the same group of experts and scholars were invited for a second reply to the expert validity of assessment instrument. The results showed that most experts and scholars recognize the completeness, correctness, clarity, simplicity of the instrument for social support classification and agreed with the elements of social support. Finally,five patients were obtained through snowball sampling method toevaluate the instrument pretest, in order to understand the types of social support and the source of patients.It is expected that this social support assessment instrument will be used for reference and in practical work. In the future, if we can integrate the knowledge of specific majors and fields, it would become an accurate and deepening assessment tool to plan the intervening service for all types of professionals.
