An exploration of the decision making of institution placement among families with dementia elderly person

【背景與目的】於失智是不可逆的疾病，會隨病情惡化加重照顧者的負擔，往往促使失智症群體成為機構式照顧的高危險群體。機構安置決策是一個動態且複雜的過程，雖然西方國家已有部份研究探討機構安置過程，但大多是針對失能老人或以照顧者為主要研究對象，以家庭為單位的決策過程研究還十分稀少，目前尚缺乏完整的理論可指引實務人員瞭解失智症老人家庭在台灣文化下之機構安置決策過程，因此，本研究旨在建構失智老人機構安置之家庭決策過程的理論架構。 方法】研究使用採用茁根理論質性方法。主要的訪談對象是曾經考慮過機構安置或有機構安置經驗的失智老人家庭成員。資料收集以家庭為單位，每個家庭主要訪談對象至少包括主要照顧者及/或決策者。資料收集採面對面訪談，受訪家庭可以多位成員一起接受訪談，也可分別接受訪談，所有訪談均採錄音及逐字轉譯。資料分析主要應用ATLAS.ti資料分析軟體及持續比較策略。深度訪談22個家庭， 33位家庭成員接受訪談，總訪談次數為32次。受訪者中有19位女性，14位男性，年齡最小為37歲，最長為84歲，平均年齡為55.3歲。結果】究經分析後，發現家庭決定將失智老人安置到機構歷程之重要概念，形成「尋求認可與和諧的過程」。家庭採用「尋求認可與和諧過程」，是為了要維持機構安置決策過程中個人、家庭及社會價值關係的平衡與和諧。「尋求認可與和諧過程」包括四個過程要素分別為「覺察改變照顧的需求」、「照顧資源評價」、「家庭協商」、「發展鞏固認可策略」，這四個要素通常是需要一一達成，家庭方可完成機構安置決策的過程。這四個要素彼此互相影響及互動，呈現家庭決策過程一連串的評估及評價，是一個循環、且動態的過程。結論】模式可以供作解釋台灣社會脈絡中的決策過程及相關變項，研究結果可以豐富老人護理專業領域的理論基礎，提供給社區照護人員及個案管理人員家庭機構安置決策過程可能遭遇的問題、壓力及需求等相關知識，提升家庭照護品質，研究結果亦可作為未來發展失智老人照護政策之參考。【Background and specific aim】he combination of the irreversible disease process of dementia and the progressively heavy caregiving load on families often makes dementia persons a high risk group for institutionalization. The decision making process to place a person in an institution is a complex and dynamic one. Some researches have been conducted in western countries exploring the decision-making process of institutionalizing a family member. However, in most of the studies on frail elders or on their primary caregivers, the research conducted specifically on the family unit was minimal or non-existing. To date, there is a lack of a sound theory to provide a guide for clinical practice to understand the family decision-making process of institutionalizing a family member in the Taiwanese culture, especially for families living with a dementia person. Thus, the purpose of this study was to develop a conceptual framework related to the decision making process by a family to institutionalize an elderly family member with dementia.Methods】he grounded theory method was used in this study. The main participants were families that had experienced institutionalizing a relative with dementia, and families that were intending to do so. The data collection unit was the family. Each family participating in this study was interviewed which included at least the primary caregiver and/or the primary decision maker. Twenty-two families, including 32 family caregivers participated in the present study, and 32 face-to-face interviews were used to collect the data. The representative of each family could choose if they wanted the interviewer to interview only the representative of the family or several members of the family. All interviews were audio-recorded and then transcribed verbatim. ATLAS.ti soft ware and a comparative strategy were employed to analyze the data. The participants included 19 female and 14 male family caregivers, their ages ranged from 37 to 84 years, and their mean age was 55.3 years.Results】he findings of our study revealed that “seeking for approval and synchronization” emerged as the core category from the family decision-making process of institutionalizing their relative with dementia. The “seeking for approval and synchronization” by the family caregivers was as a result of their desire to maintain a harmonious and balanced relationship between the individual, the entire family and society when going through the decision-making process to institutionalize their elderly family member with dementia. This “seeking for approval and synchronization” included four components: “recognizing the need of a change in the caregiving mode”, an appraisal of the institution care”, “family negotiation”, and “developing strategies to consolidate an agreement”. If a family completed these four components then they had finished their process of making their decision to institutionalize their elderly relative with dementia. These four components are interrelated and showed that there is continuity in the family decision making process. The process turns out to be circular and dynamic. Conclusion】he findings of this study provide a conceptual model to explain the decision making process and its related variables to institutionalize an elderly relative with dementia, in the context of the Taiwanese society. The findings of this study enrich the theoretical base of the field of gerontological nursing by providing additional knowledge regarding the problems, stresses and needs of a family when going through the decision making process to institutionalize an elderly family member with dementia. This information will be useful to community health nurses and care managers, and promote the quality of family caregiving. Our findings also provide guidelines for the making of policies regarding this subject in Taiwan in the future.誌謝 …………………………………………………………………………………i文摘要……………………………………………………………………………ii文摘要……………………………………………………………………………iv錄 ………………………………………………………………………………vii表目錄 ……………………………………………………………………………x一章 緒論 ………………………………………………………………………1一節 研究背景 ………………………………………………………………1二節 研究目的 ………………………………………………………………3三節 研究的重要性 …………………………………………………………4二章 文獻查證…………………………………………………………………10一節 影響失智老人機構安置的因素………………………………………10二節 決策相關概念…………………………………………………………16 第三節 家庭理論與家庭決策…………………………………………………20 第四節 機構安置之家庭決策過程相關研究…………………………………30三章 研究方法…………………………………………………………………35一節 研究方法學的選擇……………………………………………………35二節 茁根理論簡介、學派比較與方法之選擇……………………………38三節 樣本選擇………………………………………………………………56四節 研究者自我準備：理論性敏感度的培養……………………………58五節 訪談指引之發展與運用………………………………………………60六節 資料收集流程…………………………………………………………62七節 資料分析………………………………………………………………64八節 研究嚴謹度……………………………………………………………69九節 倫理的考量……………………………………………………………71十節 前驅研究分析…………………………………………………………72四章 研究結果 …………………………………………………………………73一節 受訪個案及家庭背景資料簡介 ………………………………………73二節 發現核心概念「尋求認可與和諧的過程」…………………………78三節 「尋求認可與和諧過程」的要素……………………………………83四節 「尋求認可與和諧過程」的前置因素 ……………………………136五節 「尋求認可與和諧過程」的助力與阻力 …………………………145六節 完成與未完成「尋求認可與和諧過程」的家庭比較……………150五章 討論 ……………………………………………………………………152一節 「尋求認可與和諧過程」與其他探討機構安置決策的相關文獻比 較 ………………………………………………………………………152二節 「尋求認可與和諧過程」與現存相關理論比較 …………………166三節 「尋求認可與和諧過程」理論的評價 ……………………………167六章 結論與建議 ……………………………………………………………169一節 建議 …………………………………………………………………169 第二節 研究限制 ……………………………………………………………174三節 研究結論 ……………………………………………………………175考資料 …………………………………………………………………………176文部份 ………………………………………………………………………176文部份 ………………………………………………………………………179錄一 田野筆記範例 …………………………………………………………189錄二 理論摘要範例 …………………………………………………………191錄三 前驅研究概念類組 ……………………………………………………192錄四 與機構安置決策過程相關之文獻 ……………………………………199錄五 研究參與同意書 ………………………………………………………212錄六 IRB通過證明 ………………………………………………………217amp;#8195;表目錄1 「尋求認可與和諧的過程」：台灣失智老人機構安置之家庭決策過程…811 社會科學研究典範的基本觀點 ……………………………………………422 兩個茁根理論方法的哲學觀點 ……………………………………………433 兩個茁根理論方法的產物及先導目標比較 ………………………………454 比較兩個茁根理論方法的程序步驟 ………………………………………515 開放性編碼表舉例 …………………………………………………………656 初步概念類組歸納過程範例 ………………………………………………667 主軸性編碼舉例 ……………………………………………………………678 收案老人的基本資料 ………………………………………………………749 受訪家屬的基本資料 ………………………………………………………7610 台灣失智老人機構安置之家庭決策「尋求認可與和諧過程」之要素 …8