肢體障礙者之成年早期手足角色探究

本研究之研究取向為質性研究，採用半結構的深度訪談作為資料蒐集的方法，並使用主題分析法來進行資料分析，旨在探討成年早期的手足，其作為肢體障礙者的手足，對其角色展演的主觀詮釋，並了解手足會受到哪些影響及其對於未來生活的展望為何。研究者使用立意取樣，以年齡20-30歲之間且至少具有一位肢體障礙手足的一般手足作為研究對象，於網路上透過facebook進行公開招募後，共找到五位研究參與者。本研究發現手足的角色展演主要為協助者、保護者、陪伴者及傾聽者，輔以童年時期的玩伴與未來的財務管理者及指導者等多元的角色展演，而未出現照顧角色的原因則是因為手足將照顧與協助區分為不同概念的結果，而在生活影響上雖在心理、人際互動與婚姻關係等面向上有負向的經驗，但亦有較能因應障礙者協助需求、興趣養成與復健醫學的認識等正向經驗，最後，關於未來生活交集，手足多期待能保有各自的生活圈，但仍預期在將來提供協助，並試圖實現其肢障手足自立生活的期待，此外，回應研究目的，本研究結論如下：一、協助者為主的角色扮演：手足將照顧定義為當其肢體障礙手足無法自理生活，而須代為執行的狀態，而協助則是補充其肢體障礙手足力有未逮的部分，考量照顧程度與行為，研究參與者多將自己詮釋為協助者。二、社會眼光下的角色義務：手足透過他人眼光，來想像作為肢體障礙者的手足，應該如何表現才是符合社會觀感所期待的模樣，故手足多半會與肢體障礙手足維持基本的聯繫，並提供協助。三、角色期待的世代差異：相較於父母期待手足之間相互陪伴，祖父母受到傳統家庭觀念的影響，多會要求一般手足照顧其肢體障礙手足，以符合社會的角色期待。四、希望未來彼此都能好好的：手足多期待未來生活是能彼此各自安好，但有交集並保持聯繫的狀態。

關鍵字

肢體障礙；成年早期；手足；角色理論；角色展演

並列摘要

This qualitative research aims to explore the role performance of siblings in early adulthood of physically disabled individuals with subjective interpretation, and to comprehend the influence the siblings are subjected to and their future outlooks. Purposive sampling of individuals between the age from 20 to 30 whom have at least one sibling with physical disabilities was conducted. A total of 5 participants with aforementioned state were public recruited from Facebook. Data of this qualitative research was collected through semi-structured in-depth interview and analyzed with thematic analysis. The research unraveled the role performance of individuals as siblings of people with physical disabilities to be primarily supporter, protector, companion, and listener. On secondarily level, the siblings act as childhood playmates, future financial managers, mentor and other diverse roles. The lack of roles as caregiver was due to the fact that the siblings discern concept between caregiving and assistance. Despite having negative experiences in mentality, interpersonal interactions and marital relationships, the siblings tends to have positive experiences in assisting the needs of the disabled, development of hobbies and apprehension of physical medicine and rehabilitation. Last but not least, in regards to future connections, the siblings of physically disabled individuals expect both to have their own circles of social interaction while anticipating providing assistance and attempting to realize independent living of the physically disabled individuals. In response to the purpose of this research, the conclusions are as the following, I. Supporter as the primary role: The siblings define caregiving to be managing the daily lives of individuals with physical disabilities only when such activity could not be done on their own. Supporting is defined to be complementing deficiency in abilities of the physically disabled siblings. Considering the extent of caregiving and behavior, the majority of research participants interpret oneself as the supporter. II. Role responsibility from societal perspective: The siblings perceive the expected course of action in accordance to the social perception as the siblings of physically disabled individuals. And thus, most siblings will retain basic connection to their physically disabled siblings and provide support. III. Difference in role expectation between generation: In comparison with the parental expectation of companionship between siblings, the majority of grandparents expected able-bodied individuals to take care of their physically disabled siblings as conformation to societal expectation under the influence of traditional familial mindset. IV. Future well-being for both parties: The siblings anticipate future lives of themselves and their physically disabled siblings to be well individually and remains in connection with each other.