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系統識別號 U0026-0307201903335900
論文名稱(中文) 肌肉骨骼系統先天性畸形和變形兒童之父母對子女疾病適應內涵:初探性質性研究
論文名稱(英文) Parents’ Disease Adaptation in Child with Congenital Malformations and Deformations of the Musculoskeletal System: An Exploratory Qualitative Study.
校院名稱 成功大學
系所名稱(中) 行為醫學研究所
系所名稱(英) Institute of Behavioral Medicine
學年度 107
學期 2
出版年 108
研究生(中文) 劉威麟
研究生(英文) Wei-Lin Liu
學號 s86051069
學位類別 碩士
語文別 中文
論文頁數 350頁
口試委員 召集委員-謝碧玲
指導教授-郭乃文
共同指導教授-林啟禎
中文關鍵字 先天性畸形和變形  疾病因應  兒童父母  質性研究 
英文關鍵字 Congenital malformations and deformation  Disease adaptation  Parents  Qualitative study 
學科別分類
中文摘要 研究目的:研究建議先天性畸形和變形患童家長在面臨患童診斷與治療時,若能獲得醫護人員所提供之支持,可促進家長對於治療的動機、滿意度與配合度,進而為患童帶來較佳的疾病預後。然而早年研究均聚焦於家長在其中所面臨的掙扎和醫療環境協助之作為。即使有研究者試圖整合「身心障礙」兒童與「家庭」進行研究,也偏重於社會福利與醫療,亦忽略個體於疾病適應期間之積極作為。基於此議題之未完整,且現有量化研究亦忽略患童家長於過程中展現之技巧與能力。故本研究將針對患童家長在疾病適應歷程中展現之具體因應技術、資源運用技巧進行探討,發展能協助患童家長成功因應疾病之心理機制架構。
研究方法:本研究經成功大學醫學院附設醫院人體試驗委員會審核通過,編號B-BR-107-004,採立意取樣並經資深小兒骨科專科醫師確診後,轉介10名肌肉骨骼系統先天性畸形和變形兒童家長作為研究參與者。於隱蔽空間內個別進行以肌肉骨骼系統先天性畸形和變形兒童家長疾病適應為主題之半結構式深度訪談,並以建構主義的紮根理論作為分析派典進行資料分析。於10份文本資料中,共標定出1255筆意義單元(全距為44至181)。以建構主義的紮根理論分析後,萃取出991筆概念化、505筆次範疇、46筆主範疇、12個面向,以及4種核心主軸。
研究結果:本研究共萃取出四大核心主軸,分別為:腦心智功能、支持系統、社會文化,以及就醫歷程。其中「腦心智功能」軸分為四個主要面向,共十二個內涵;「支持系統」軸分為三個主要面向,共十二個內涵;「社會文化」軸分為兩個主要面向,共九個內涵;「就醫歷程」軸分為三個主要面向,共十三個內涵。
討論:疾病適應的歷程並不單只出現於患者本身,家庭成員與患者的關鍵人士同樣在整個疾病因應的歷程中將面對疾病帶給生活的挑戰。當就醫歷程中出現許多來自醫療系統、患童境遇,以及家長所感知到的現況所造成的困境,又同時扮演多重社會角色時。若關鍵人士擁有能運用自身優勢之腦心智功能,協助自己啟動因應並知覺到可尋求並取得的支持,在壓力情境中展現出積極作為,將促進家庭成員的安適感且能維持自身良好之心理健康。
英文摘要 Objective: Early studies focused on the struggles faced by parents. Researchers are also more focused on social welfare and medical care, ignore the potential power of individuals. Therefore, this study will explore parents’ disease adaptation to the child with congenital malformations and deformations of the musculoskeletal system.
Method: After being diagnosed by a senior pediatric orthopaedic attendant physicians, 10 parents whose children with congenital malformations and deformations of the musculoskeletal system were referred. The semi-structured in-depth interviews method is used, focusing on parents’ disease adaptation to the child with congenital malformations and deformations of the musculoskeletal system. The interview was conducted in the concealed space, and the grounded theory research method were used to analyze the data. A total of 1255 units(44 to 181 for full distance) were calibrated in 10 data. After analyzed by the grounded theory, 991 conceptualizations, 505 meanings, 46 themes, 12 aspects, and 4 main axials were extracted.
Result: According to the result, there are four main axials in this model, including: “Mental ability”, “Support system”, “Culture”, and “Medical history”. There are four aspects together with twelve themes in the “Mental ability”; while there are three aspects together with twelve themes in the “Support system”; two aspects together with nine themes in the “Culture” and three aspects together with thirteen themes in the “Medical history”.
Discussion: Keyperson‘s own advantage mental ability can help them initiate coping that can maintain family’s psychological well-being.
論文目次 第一章、 緒論.............................................1
第一節、研究緣起..........................................1
第二節、研究目的與研究問題.................................3
第二章、 文獻回顧.........................................5
第一節、罹患重大疾病者與其家庭之心理健康狀態.................5
第二節、家庭於兒童罹患先天性疾病之疾病適應...................7
一、罹患先天性疾病兒童之家庭成員的危機與適應狀態............7
二、疾病適應理論與模型.....................................8
三、不同文化中的因應技術..................................10
第三節、肌肉骨骼系統先天性畸形和變形之疾病特性..............12
一、發展性髖關節發育不良..................................14
二、多指症、併指症與多指併指(趾).........................15
三、軟骨生成(成骨)不良..................................16
第三章、 研究設計.........................................17
第一節、質性研究法........................................17
第二節、紮根理論分析法....................................19
第三節、資料蒐集與分析....................................24
一、研究倫理審查.........................................24
二、半結構式深度訪談......................................24
三、四向度心理危機表......................................28
四、資料處理與分析........................................30
第四節、研究對象.........................................32
一、研究參與者納入與排除條款..............................32
二、研究參與者招募方法....................................33
三、臨床上不良反應處理方法................................35
四、研究參與者基本資料....................................35
五、受訪者心理健康狀態....................................40
第四章、 研究結果.........................................49
第一節、 啟動額葉─腦心智功能如何在這片混亂中讓我重新站起來...57
一、神經心理功能.........................................57
二、情緒狀態.............................................59
三、個人經驗.............................................60
四、因應技術.............................................62
第二節、 背後支持的他/她們─支持系統如何在適應歷程中支持自己..64
一、主觀感受.............................................64
二、客觀支持.............................................65
三、負擔.................................................66
第三節、 世人的眼光─台灣特有的社會文化與價值觀對自我的詮釋...67
一、民俗文化.............................................67
二、社會結構.............................................69
第四節、 與疾病共存─就醫歷程對我造成的感受..................71
一、醫療系統.............................................71
二、家長感知.............................................74
三、兒童境遇.............................................75
第五章、 結論與討論.......................................79
第一節、與文獻對話........................................79
一、疾病適應是一段沒有典型模式的旅程.......................79
二、復原力源自於大腦......................................83
三、「知道」我的背後還有靠山...............................85
第二節、研究建議.........................................87
第三節、研究限制.........................................88
第四節、總結.............................................89
參考文獻.................................................91
中文文獻.................................................91
外文文獻.................................................93
附件一、研究參與者同意書.................................103
附件二、研究參與者基本資料紀錄表..........................108
附件三、A2之訪談逐字稿編碼結果............................110
附件四、B1之訪談逐字稿編碼結果............................135
附件五、C1之訪談逐字稿編碼結果............................159
附件六、C2之訪談逐字稿編碼結果............................195
附件七、D1之訪談逐字稿編碼結果............................219
附件八、D2之訪談逐字稿編碼結果............................246
附件九、E2之訪談逐字稿編碼結果............................278
附件十、E1之訪談逐字稿編碼結果............................290
附件十一、F2之訪談逐字稿編碼結果..........................298
附件十二、G1之訪談逐字稿編碼結果..........................336
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