[[alternative]]A Case Study of the Family’s stress and Adjustment Process of a Child with Osteosarcoma

[[abstract]]摘 要 本研究探討兒童罹患惡性骨肉瘤並截肢的家庭，在面對診斷、治療、截肢及生活重建等歷程時，家庭成員對家中兒童罹癌的壓力經驗，包括癌症造成家庭的生活變化以及家庭成員面對壓力時的因應方式與調適過程。 本研究以家庭為研究個案，深度訪談主要照顧者與罹癌當事人，分別呈現兩人的壓力調適經驗與互動歷程。研究結果發現：(1)主要照顧者在面對孩子罹患癌症的壓力有:經濟、教養、疾病威脅生命、 治療期間家庭角色期待改變、穩定家人的情緒、面對醫療決策的壓力、截肢 可能造成孩子失能與失去自尊、手足互動改變、以及病童未來發展等壓力。 罹癌當事人的壓力經驗為：面對可能死亡的恐懼、失去肢體動作能力、害怕失去夢想、截肢後找到身體動作的限制以及適應外界的眼光等。(2)癌症造成家庭生活經驗的改變內容為透過資源整合與認知建構，不但協助病童在治療期間習得因應情緒、生理變化策略並學習獨立自主的生活，以正向態度重建身體心像與自尊，同時也重整家庭結構與角色，家庭功能甚至比壓力事件前更好。(3)主要照顧者與罹癌當事人的因應調適方式為配合醫療爭取最好治療機會、維 持療程穩定進行、誠實告知、創造尊重溝通空間、在需要的時候母子互相支持打氣、為罹癌壓力外化、去汙名化，建構轉化形成正向的信念與態度，期中改變認知與對事件的態度最具關鍵性。 本研究針對研究結果提出討論與建議，可供兒童罹患惡性骨肉瘤並截肢的家庭親職及助人者後續研究及實務之參考。關鍵字：癌症病童、家庭壓力、調適過程 、個案研究[[abstract]]AbstractA Case Study of the Family’s stress and Adjustment Process of a Child with OsteosarcomaThe purpose of this study is to explore and to describe the experiences of a family with a child with Osteosarcoma when they faced periods of diagnosis, treatment, amputation and life re-building, including the changes of life of a family ,the coping and the adjustment process. The study is a case study of a family, the primary caregiver and the party with Osteosarcom was interviewed. Total of two interview data were analyzed and interpreted. The main finding of this study is to show their process of adjustment and the interaction between them. The main findings of this study are as follows:(1) When the mother facing her child got Osteosarcoma, the stressors are: life-threaten disease, changes of family’s role anticipation during treatment, family member’s emotional impact, the pressure of medical decision-making, the amputation may make the child low self-esteem, sibling interaction, fear of death, lose of future.(2) Although cancer impacts the life of whole family, they may help the family cope through cognitive construction and intergration of resources in reponse to emotional and physical changes. Family function better than the event before because they gain positive attitude to rebuild self-esteem, reforming family organization and learning independent living.(3) Ways of coping strategies the primary caregiverand clients with cancer adapted were:with the medical treatment opportunities for the best, informed the family with honest and created respectful communication, eliminatetThe stigma of cancer, transformed beliefs and attitudes into positiv. To change the attitude is of the most critical of the events.The finding of this study could be used as a reference aiming at parents and the staff of school, and the future approach, raised suggestions.for developin a plan for parenting and related peoplefor children suffering from osteosarcoma fibromatosis amputationkey words：children with cancer、family stress、adjustment process 、case stud