社會排除或自我抉擇？罹患口腔癌者之社會參與分析

一般而言，社會參與對於個人具有多元、正面且積極的作用，亦被視為彰顯個人權利的重要管道。但對於罹患口腔癌等癌症患者而言，其社會參與的想法與需求是否因其罹患重大疾病而產生變化，是過去僅重視醫療成效、生活品質、社會支持等議題之外，亟需深入探究的課題。本研究希望提高大眾對罹患口腔癌者社會參與議題的重視，並使相關實務工作者和政策規劃者了解口腔癌患者社會參與的意涵，在尊重患者社會參與意願的基礎上，反思助人的思維和社會政策制定方向，維護罹患口腔癌者的社會參與的權利。本研究針對八位罹患口腔癌者進行深度訪談。研究結果包括：一，當受訪者經濟生活與人際互動網絡之重疊性高，社會網絡型態為連結性（bonding）強，其人際互動網絡之參與情形較容易受個人工作變動影響；二、個人工作的轉變，受個人因素（如：個人對面對疾病的態度）與社會因素（如：社會歧視）影響；三，依據「個人罹病態度與因應行為」、「社會參與型態」、「家庭生活」三個構面，受訪者之社會參與可分為四大類型：君子之交淡如水型、獨來獨往型、積極生活型，以及五湖四海型；四，受訪者在經濟生活、人際互動，以及家庭關係等範疇之社會參與情形，於罹病前後彼此間呈現消長的變化。

關鍵字

口腔癌；社會排除；社會參與

並列摘要

Generally speaking, social participation affects an individual diversely and positively, and it is also regarded as an important channel for manifesting the individual right. In the past we only attach importance to topics regarding to medical result, life quality, social support. However, whether or not the thought on and the need for social participation of the oral cancer patient were influenced due to the suffering from heavy disease, is an inquired subject. We hope this research can draw more attention from the general public to this issue, and give practice worker and policy maker an insight on the social participation of oral cancer patients. Based on respecting the willingness of patient participation in society, we reconsider the paradigm of accommodation and make social policy to maintain the right of oral cancer patients on social participation. This study derives its materials from the conversation of eight oral cancer patients. Following discoveries are found: First, the career influence the social interactions easily, only when those survey candidates have a strong bonding. The bonding of social network is strong, only when one’s economy coincide with his social interactions. Second, the careers would be influenced by personal reasons（such as personally faces the disease the manner）and the social reasons（such as social discrimination）. Third, based on " Personally faces falls ill the manner with in accordance to the behavior", "The high life of social participation", "The family life" three constructions surface, social participation of the participant may divide into four types: "A hedge between keeps friendship green mode" , "Comes and goes freely mode ", "Positive life mode ", as well as all "All corners of the land mode ". Forth, it can be found that survey candidates have growth and decline in the fields witch social participation situation of economic life, interaction and family relation when he suffered from the disease.