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研究生:陳碧蓮
研究生(外文):CHEN,PI-LIEN
論文名稱:無管人生-吞嚥困難主要照顧者對脫管認知與實踐
論文名稱(外文):NO Tube in Life: Primary Caregivers’ Relevant to the Cognition for Removal N-G tube and Practices of Dysphagia
指導教授:王秀燕王秀燕引用關係
指導教授(外文):WANG, HSIU-YEN
口試委員:詹火生徐明心王篤強胡慧嫈
口試委員(外文):CHAN, HOU-SHENGTSUI,MING-SUMWANG,,DUU-CHIANGHU, HUI-YIN
口試日期:2020-07-21
學位類別:博士
校院名稱:靜宜大學
系所名稱:食品營養學系
學門:醫藥衛生學門
學類:營養學類
論文種類:學術論文
論文出版年:2020
畢業學年度:108
語文別:中文
論文頁數:235
中文關鍵詞:無管人生吞嚥困難者主要照顧者脫管
外文關鍵詞:NO Tube in LifeDysphagiaPrimary caregiverRemoval N-G tube
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本研究旨在探索吞嚥困難主要照顧者與相關領域專家對鼻胃管脫管的照顧認知、與經驗、建構實踐脫管歷程,作為倡議鼻胃管脫管議題之參考,並提昇吞嚥困難者拔除鼻胃管重返自立及尊嚴的生活。
本研究採質性研究法,以半結構式訪談法為主,焦點團體訪談法為輔,研究對象為臺中、彰化縣與南投縣吞嚥困難者之主要照顧者9名及焦點團體訪談相關領域專家6人;確保受訪者在相同議題和焦點主題自由及非預期目的性下回應經驗意見及觀點。
研究結果與發現有四部分;首先是對插管及管灌飲食、拔管照護資訊與常識認知:多數認為知識的來源為出院護理時的衛教、自行摸索照護方式、或醫護相關背景及原鄉傳統醫學融入照顧知識等。其次是資訊獲取:從醫護的角度探詢、脫管照護訊息零碎等,透過宣導後獲簡易實用策略和權益行使之資訊。
第二部分是文化、價值觀交織下的照顧經驗:在照顧決策多為長子發令,長媳執行照顧行為。少數家庭是全家討論達成共識。文化價值對照顧影響有四:(一)多數家照者婦女遵守孝道及和諧,擔任完美媳婦之角色。 (二)飲食文化影響:多數家照者認為能吃是美,鼻胃管無法滿足口慾,贊成脫管。(三)外觀完整性對以胃造廔口取代鼻胃管進食的贊成與反對各占一半,反對原其因是胃造廔口認知不足及外觀缺損失去完整性。(四)在華人善終觀念:多數人希望到死亡前脫管保有生命的價值和意義,保有尊嚴。
依據中國人文化價值信念發展五個照顧角色:包括(一)百善孝為先型、(二)家和萬事興型、(三)宿命型、(四)尊重權威型以及(五)價值信念下的照顧者決定型。
第三部分照顧過程壓力與因應: 在照顧壓力方面壓力源來自六大項:包括家庭壓力源、社會壓力源、照顧知識和資訊不足壓力源、照顧負荷壓力源、照顧角色壓力源、漫長照顧歷程之壓力源。壓力因應策略包括第一是積極突破照顧方法,善用周遭資源。第二藉宗教與社會支持緩解壓力。第三調適自己的心理和能力,積極面對問題和解決問題。第四昇華-因應人生歷練實現價值和目標。因應的方式根據照顧總年資歸納發展出三個模式:(一)逐步發展因應方式型、(二) 隨遇而安型及(三) 且戰且走型。因應的照顧階段共四個:第一階段認命期(0-3年)是以認命維繫家庭。第二階段因應期(3-5年)特徵為在職及資深照顧者面臨照顧或工作的兩難。第三階段長期抗戰前期及利他期(5-7年)是資深照顧期,此時接受強迫個人產生長期抗戰的適應性壓力。第四階段7年以上長期抗戰習慣期在此階段是長期的認命,過程中會面臨相互依賴的被照顧者離開人世的問題。
第四部份照顧支持與態度:在照顧支持包括 (一)被告知真相的權利,(二)生活照顧技能的輔助,(三)倡議家庭主照顧者發聲的機會,(四)拔管和吞嚥訓練的權益,(五)社會支持擴大深入民心和社區。在照顧態度方面包括(一)認清拔除鼻胃管改採胃造廔口為可行性及便利之性替代方法,(二)家庭決策者之態度影響拔管與否,(三)懂得運用社會資源連結,就會減輕照顧壓力。
據此,研究建議:(一) 實務面: 社區宣導-獲知多元的知識,成立社區資訊平台,資訊普及,依不同照顧階段支持吞嚥困難者家庭脫管實踐以及協助吞嚥困難家庭強化營養備餐的技巧與能力。(二)政策面:長照增設吞嚥訓練生活指導員,建立取得吞嚥訓練指導員培植機制,以及提升知病權益。(三) 研究層面:對未來研究建議擴大探討華人文化對鼻胃管脫管影響因素、認知、以及行為意圖,才能更深入了解家庭主要照顧者及被照顧者之脫管權益和意願。

The purpose of the study is to analyze the cognition and experience of caretaking dysphagia patients who removed N-G tube. The study will be based on surveys of Primary Caregivers and authorities of related field. The goal of the study is to advocate the removal of N-G tube and moreover giving reference to link with Long-term care policy. Expecting the increased rate of N-G tube removal leads to a life with independence and dignity of dysphagia patients.
The study adopts qualitative research. The research is mainly conducted by semi-structured interview, supplemented with focus group interview. In-depth interviews are conducted with 9 primary caregivers of dysphagia patients in Taichung, Changhua and Nantou counties and 6 focus group interviews with experts in related fields. The interview topics and outlines are listed with structural plan and closely based on the experience and education of each interviewee. The interviewees are ensured to have a free context and unintentional respond to their experience, opinions and views on the same topic.
There are four aspects of the study. First of all, about the common sense and the cognition of intubation, tube feeding and caretaking after the removal of N-G tube. The majority of our interviewees regard the knowledge of caretaking from the health education while discharge from the hospital, which left them confused after practicing less than three times. Part of our interviewees felt the information of caretaking is not clear enough, which leads to misunderstanding and force them to develop their own caretaking methods. A minor part of our interviewees obtain cross cultural caretaking knowledge from traditional aboriginal medication. Very few of them have considerable knowledge level due to high academic qualifications or medical and nursing related backgrounds.
In the past, from the perspective of medical care worker, the caretaking information for patients of N-G tube removal is fragmented, and the social community doesn’t provide enough information. Promoting the knowledge can lead people to easily obtain useful strategies, specified guideline and the information of exercise rights.
The second aspect is the caretaking experience under the influence of culture and values. The primary caregivers of dysphagia patients are usually the eldest daughter-in- law, while the eldest son being the decision maker. Only a very few family faces the caretaking decision with consensus through family discussions.
There are four main influences culture and value effects the caregiving procedure.
1.Most caregiving women hold traditional virtue “Where the needle goes, the thread follows.” Comply with filial piety and will strive to maintain the harmony of family. Parts of the interviewees follow the virtues their religion taught them, to love others as themselves, which make them take the responsibility of caretaking. Very little interviewees divorced, but still took the responsibility of caretaking even though they are not affinity anymore.
2.The aspect of Chinese food culture. Most of the primary caregivers think that the conception of eating food from mouth is a very important part of a beautiful life. It is very difficult to satisfy the appetite due to the N-G tube, therefore they are very supportive of the N-G tube removal. Some of the caretakers are still afraid that they don’t have enough knowledge to take care of the patients after the N-G tube removal.
3.The importance of appearance integrity to people. One of the possibilities of substitution for N-G tube is PEG, but not all the families are supportive of the idea, with half of the families refused the proposal. The major reason might be the difference of grade of knowledge for PEG, with the minor reason might be the loss of integrity of the overall appearance.
4.The concept of dying a natural death of Chinese culture. Most patients hope their own family help the removal of N-G tube before passing away, to preserver the quality and value of life and be protected and with dignity.
The study also develops a classification of five types of primary caregivers due to the interview. 1. Filial piety oriented 2. Family harmony oriented 3. Destiny decides all 4. Respect the authority 5. Family value oriented.
The third aspect is focused on the stress of caretaking procedure, and how to overcome the stress. The stress of caretaking usually comes from six sources. The family stress, social stress, lacking of caretaking knowledge and the deficient of information, how heavy the caregiving burden is, the character of caregiving and the unpredictability of caretaking time. The stress response strategies include three important aspects.
1.Actively adopt methods to break through the role of caregiver, learn new knowledge, couple emotional support and make good use of surrounding resources.
2.Relieve stress through religious belief and social support system.
3.Adjust and take care of your own psychical and mental health, try to face and solve problems actively with your own ability.
4.Sublimation; In response to life experience, lead one's life to achieve its own values and goals.
The strategies of handling stress are mainly classified into three groups due to the total year of caregiving. 1. Gradually learning and develop corresponding method 2. Going with the flow 3. Fight and go. The corresponding caretaking stages are also classified into four groups.
1.The first stage, recognition period ( 0-3 years of caregiving ) : maintaining the caretaking procedure with recognition.
2.The second stage, response period ( 3-5 years of caregiving ) : facing the dilemma between quitting job or keep striving. The two main caregivers can be regard as the on-the-job caregiver and the senior caregiver.
3.The third stage, early period of the long-term caretaking and altruism period ( 5-7 years of caregiving ) : the family member will either be forced to take part in caretaking or volunteer in the caretaking. Individuals develop a strategy to handle stress in the long-term caretaking.
4.The last stage, long-term caretaking period ( over 7 years of caretaking ) : the period is a long-term recognition, the primary caregiver will also experience the pass away of the patient who has been dependent to each other in the period.
The last aspect focused on is the support and attitude of caretaking. The support of caretaking includes all the rights the primary caregiver must have. 1.The right of being told the truth. 2. The assistance in life care skills. 3. Opportunities for the primary caregiver to be seen and valued. 4. The right of being trained for N-G tube removal and swallowing training. 5. The social support system should expand publicity and deep into the hearts of the people and the community. The attitude of caretaking includes the mentioned three aspects below. 1. Recognize that removing the N-G tube and replacing it with PEG is a feasible and convenient alternative. 2. Attitudes of family decision-makers affect removal of N-G tube. 3. Knowing how to use social resources to link with caretaking will reduce the pressure of caregiving.
Based on this, the research recommendations: (1) Practical aspects: community advocacy-learn diverse knowledge, set up a community information platform, popularize information, support family deregulation practice for people with dysphagia according to different stages of care, and assist families with dysphagia to strengthen nutrition and meal preparation Skills and abilities. (2) Policy aspect:long-term care has added swallowing training life instructors, establishing a training mechanism for obtaining swallowing training instructors, and enhancing the rights and interests of disease awareness. (3) Research aspects: Research in the future, It is recommended to expand the study of the factors, cognition, and behavioral intentions of Chinese culture on nasogastric tube detubation.In order to have a deeper understanding of the family’s main caregiver and care recipient’s rights and wishes.
謝誌 I
中文摘要 III
Abstract V
目錄 IX
表目錄 XI
圖目錄 XII
第一章 緒論 1
第一節 研究背景與動機 1
第二節 問題意識 9
第三節 研究問題與研究目的 14
第四節 重要名詞釋義 16
第二章 文獻探討 17
第一節 吞嚥困難與主要照顧者 17
第二節 尊嚴的那把鑰匙:鼻胃管置入與拔除鼻胃管 25
第三節 主要照顧者照顧吞嚥困難者過程-觀點、資源、壓力 33
第四節 照顧權益理論與鼻胃管脫管態度與行為實踐之相關理論 39
第五節 國內外對吞嚥困難與主要照顧者之相關研究 55
第三章 研究方法與設計 60
第一節 研究方法 60
第二節 研究概念性架構 67
第三節 資料蒐集的方法與分析 69
第四節 研究方法之檢驗 76
第五節 研究倫理 79
第四章 研究結果 81
第一節 我的認知-插管及管灌飲食、拔管照護資訊與常識 81
第二節 文化、價值觀交織下的照顧經驗與拔管觀點 93
第三節 照顧過程-照顧壓力與因應 109
第四節 移除鼻胃管-主要照顧者觀點 139
第五節 建構無管人生圖像 154
第六節 對話-拔不拔管?專業與實務工作者觀點 171
第五章 結論與建議 185
第一節 結論 185
第二節 討論與省思 190
第三節 建議 194
第四節 研究限制 197
參考文獻 198
附錄一 受訪者參與研究邀請函 219
附錄二 受訪者參與研究同意書 220
附錄三 訪談大綱 221
附錄四 焦點訪談大綱 224
附錄五 博士論文Turnitin 論文原創性檢驗 225
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