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研究生:李佩佳
研究生(外文):Pei-Chia Lee
論文名稱:呼吸器依賴患者的主要照顧家屬對病患自加護病房轉入呼吸照護病房之決策過程困境
論文名稱(外文):Dilemmas of Decision-Making of Primary Family Caregivers in Transferring Ventilator-Dependent Patients from Intensive Care Unit to Respirator Care Ward
指導教授:施富金施富金引用關係
指導教授(外文):Fu-Jin Shih
學位類別:碩士
校院名稱:國立陽明大學
系所名稱:臨床暨社區護理研究所
學門:醫藥衛生學門
學類:護理學類
論文種類:學術論文
論文出版年:2009
畢業學年度:97
語文別:中文
論文頁數:293
中文關鍵詞:呼吸器依賴患者主要照顧家屬轉至呼吸照護病房決策過程決策困境照護困境調適策略期望探索性質性研究
外文關鍵詞:ventilator-dependent patientsprimary family care-giverstransferring to respirator care warddecision-making processdilemmas of decision-makingcaring dilemmasadaptation strategyexpectationexplorative qualitative research
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研究背景
長期呼吸器使用在近年來有明顯急遽增加情形。在臺灣現在的健保給付制度及有限的醫療資源限制下,醫療院所常以有效整合與應用醫療資源及醫療成本為由,建議甚或要求家屬配合其政策,更改照護地點,雙方因此常發產生衝突。醫療人員若能深入瞭解長期呼吸器患者的主要照護家屬於照護過程各階段所面臨的決策困境及原因,將有助於與家屬的溝通,並進一步發展雙方較能接受的決策與照護措施,提供整體性照護品質,並減輕家屬的心理壓力與實質負擔。

研究目的
本研究目的有:
1.瞭解呼吸器依賴患者的主要照護家屬對病患自加護病房轉入
呼吸照護病房的決策過程、決策困境與影響因素;
2.瞭解呼吸器依賴患者入住呼吸照護病房期間,主要照護家屬所
面臨的照護困境與影響因素;
3.瞭解呼吸器依賴患者入住呼吸照護病房期間,主要照護家屬的
調適策略; 及
4.瞭解呼吸器依賴患者入住呼吸照護病房期間,主要照護家屬的期望。

研究方法
本研究採探索性質性研究,以立意取樣法針對南部兩家呼吸照護病房之呼吸器依賴患者的主要照顧家屬(簡稱家屬)進行收案,以半結構訪談指引進行面對面深入訪談,訪談內容以質性內容分析法整理。
研究結果
本研究共訪談二十位家屬,其中17位為女性;年齡由38到82 (平均51.8 ± 9.9)歲,75%為40~60歲。研究發現,有關如何安置患者至呼吸照護病房的決策過程,所有家屬皆經歷「被告知期」、「磋商期」、「無奈接受期」、「挑選期」、「決定期」、「等待期」、及「入住後評值期」等七期階段。無轉出決策經驗且缺乏心理準備的家屬在「被告知期」後→「疑惑期」→「蹉商期」→再進入「無奈接受期」。無轉出決策經驗但有心理準備的家屬則在「被告知期」後→「蹉商期」→再進入「無奈接受期」。
各決策階段有其獨特的考慮內涵及困境。在「被告知期」的決策考慮內涵為:(1)由醫療團隊主導、(2)獲得需轉出加護病房的原因與解釋、及(3) 獲得醫療團隊提供的照護資訊。在「疑惑期」的決策困境為:(1) 結果與自我期待不一致、及(2)對病況與照顧掌握的不確定性。
在「蹉商期」的決策考慮內涵為:(1)磋商持續留院照顧的機會、(2)衡量居家或呼吸病房照顧之優劣、及(3)醫療人員與重要他人之建議與勸導。另,此階段的決策困境為:(1)原醫院無長期呼吸照護病房、(2)一般病房無法提供照顧的人力與設備、(3)健保局與醫院對規定說法不一致、及(4)立即居家照護條件不足。
在「無奈接受期」的決策考慮內涵為:(1)無奈接受並配合規定與政策轉出、及(2)體認居家呼吸器照護的困難。另,因對家屬來說此決策是充滿無奈且困難重重的決定,故此期的決策考量內涵,即是其決策困境。
在「挑選期」的決策考慮內涵為:(1)呼吸照護病房資訊的資訊來源、及(2)挑選呼吸照護病房。另,此期無顯著之困境,家屬以多比較、多參觀的正向態度,來面對挑擇合宜之照護病房。
在「決定期」的決策考慮內涵為:(1)主要決策者主導、及(2)家屬間相互討論尋求支持。另,此階段的決策困境為期望的呼吸照護病房床位不足。
在「等待期」的決策考慮內涵為:(1)安排聯絡轉院事宜、(2)解釋並尋求患者配合、(3)調整心態並做好轉出照顧之心理準備、及(4)對呼吸照護病房的期待。另,此階段的決策困境為對呼吸照護病房的照護與聯絡交接資訊有不確定。
最後,在「入住後評值」決策考慮內涵為:(1)依患者健康狀況做評價、(2)既已選擇,接受所選、及(3)轉院動機的觸發。
家屬於患者轉入呼吸照護病房期間,所面臨的五大照護困境包含: (1)令人擔憂且無措的病況、(2)未符合期待的醫療與照護品質、(3)害怕積極性的醫療處置、(4)混亂的生活與個人角色次序、及(5)不充裕的經濟與照護資源支持。
影響家屬面臨的照護困境的因素有: (1)患者相關因素: 含患病時間長而疾病嚴重程度高、與患者的年紀大; (2)主要照顧者相關因素: 含無法預估處置後結果且不捨患者再多受苦、與對照護問題的理解程度有限; (3)家庭相關因素: 含自我觀念與傳統家庭倫理觀衝突、有限的經濟與家庭支持系統、與家屬間照護信念不一致; (4)醫療團隊相關因素: 含照護人員工作馬虎與態度不良、照護人員工作負荷大且人力配置有限、與醫療團隊缺乏雙向且一致的溝通討論、與病房管理與評價制度不彰; 及(5)社會文化相關因素: 含有華人傳統思想,與社會與論壓力。
家屬針對不同照護困境採取的調適策略不同。家屬也進一步表達自己對病患的病情、對照護、對個人、及對社會資源的期望。整個照護過程中,家屬會經歷病患轉出加護病房、與入住呼吸照護病房兩個時期,兩時期皆含「初始決策階段」、「中間調適階段」,及「結束再適應階段」等三個決策過渡期。當病患轉入呼吸照護病房後,家屬會評價其照護品質優劣,若不符合病患的需求與家屬的期待,可能引發家屬轉院動機,以尋求更符合病患照護需求的呼吸照護病房。

結論
大多數的家屬多是初次面對不同單位間複雜的轉移決定,主要困境涉及多面向因素。家屬表示常因對照護現狀及經驗不足,而擔心居家自行照護會有困難;然而,醫院表示因醫療照護資源不足需配合健保規定,而建議病患轉至呼吸照護病房,決策過程顯得無奈且匆促。因此,在決策過程中承受情感面與現實面的重大壓力。而不同決策類型的家屬,其決策過程亦不同:與是否有轉出的決策經驗、及是否有長期照護需依賴呼吸器患者的心理準備有關。
因此,亟需醫療人員事先及持續於整個決策過程中,能常針對病情給予完整的解釋與溝通,助其了解病況資訊,持續的澄清其疑慮,並提供及時性、友善性與且可行之照護資訊相關建議,將有助雙方共識的達成。另,可藉由出院清單的建立,讓家屬了解各醫療單位的過渡或轉院進度。如此,將有助於減少家屬對病況的不確定感與無措,進而提昇其對照護品質的信賴。
衛生政策如何有更明確且嚴謹的分級照護制度,有效整合照護資源,以助家屬及醫療機構共同達成在各醫療單位的過渡或轉院的決議,是未來努力方向。故以期本研究之發現,能夠對未來多項衛生醫療政策並行的醫療環境,做為對政府與醫療相關人士之參考。
Background
Recently, the case number of long-term ventilator-dependent patients (VDP) has rapidly increased in both intensive care units (ICU) and respiratory care wards (RCW) in Taiwan. Under the limitation of current policies of National Health Insurance (NHI) and the shortage of medical resources, most health institutes would require VDP’s primary family care-givers (PFCG) to agree with their transferring decisions on caring location (TDCL) between ICU and RCW. The related discrepancies between health professionals (HP) and PFCG were over heard. It is important for HP to better understand their clients’ worries and needs to achieve a mutual agreement on TDCL and related caring protocols.

Purposes
Aims of this study were to explore:
(1)the dilemmas and contributing factors of decision-making process which PFCG were encountered in managing VDP’s TDCL from ICU into RCW;
(2)the caring dilemmas and contributing factors which PFCG were encountered in managing VDP’s TDCL from ICU into RCW;
(3)the adaptation strategies used by PFCG in managing VDP’s TDCL from ICU into RCW; and
(4)PFCG’s expectations for managing VDP’s TDCL from ICU into RCW.

Method
An explored qualitative research method was used in this study. A purposive sample was obtained from two RCWs in southern Taiwan. Data were collected through semi-structured face-to-face in-depth interviews, and then analyzed by qualitative content analysis.
Results
Twenty PFCG participated in this study. Their age ranged from 38 to 82 years (Mean ± SD= 51.8 ± 9.9). Seventeen of them were women.
The decision-making process for all PFCG in terms of VDP’s TDCL from ICU into RCW were identified to encompass the following seven sequential stages: “being-informed stage”, “acceptance stage”, “selection stage”, “decision-making stage”, “waiting stage”, and “post-admission evaluation stage”. For the PFCG with no previous related decision experiences or psychological preparations, they further went through “being-informed stage”, “confusion transition”, “negotiation transition”, and then “acceptance stage”. For the PFCG with no previous related decision experiences but with psychological preparations, they went through “being-informed stage”, “negotiation transition”, and then “acceptance stage”.
The contents of dilemmas in each stage were not identical. In the “being-informed stage”, they are: (a) being in charged by HP; (b) the informed reasons and rationales for transferring from ICU to RCW; and (c) the caring information provided by HP.
The dilemmas in the “Confusion transition” are the discrepancies between outcomes, and self-expectations, and the uncertainty about VDP’s health status and caring needs.
In the “negotiation transition”, they are: (a) the possibilities in staying in original units in the hospital; (b) evaluating strengths and limitations of hospital-care or home-care modules; (c) the suggestions and advised from HP and other significant others. The dilemmas in this transition are: (a) lack of RCW in the original hospital; (b) lack of adequate manpower and equipment in flow units; (c) discrepancies in regulations between NHI and hospitals; and (d) lack of preparation for immediate home-care.
The contents of decision-making as well as the dilemmas in “acceptance stage” are having no privilege of argument with HP for transferring, and realizing the difficulties in caring for VDP.
The contents of decision-making in “selection stage” are being in charged by the HP decision-makers, and the discussion among family members. The dilemma in this stage is inadequate vacancy in the expected RCW.
The contents of decision-making in the “waiting stage” are: (a) arrangement of TDCL; (b) inviting VDP to compliant with the decisions; (c) practicing adjustment and psychological preparations; and (d) expectations for RCW. The dilemma in this stage is the uncertainties about caring quality of RCW and information transitions from ICU to RCW.
Last, the contents of decision-making in the “post-admission evaluation stage” are: (a) VDP’s health status; (b) cognitively and psychologically practicing acceptance of the decision; and (c) motivations for transferring to another health institute.
The following five caring dilemmas for VDP perceived by PFCG were identified: (a) anxiety about patient's unpromising health condition; (b) the unmet quality of medical care; (c) the fear of aggressive medical treatment; (d) the disorder of life and social roles; and (e) the insufficient financial and caring resources.
The factors contributing to the PFCG’s caring dilemmas involve five aspects. First, the patient-related factors were the severity of patient’s health due to long-time sickness, and the elderly of patient. Second, the PFCG related factors were being unwilling to put the patient to tolerate unpredictable outcomes, and limited understanding of the caring plans for patients. Third, the family-related factors were the conflict between self-concept and traditional beliefs of family roles, limited financial and family support system, and the discrepancies of caring beliefs among family members. Fourth, the HP related factors were the poor attitudes of HP, over workload of staff and limited manpower, lack of positive mutual communication and discussion system between HP team members, and the ineffective ward management systems. Last, the socio-cultural related factors were the traditional Chinese beliefs, the stress from society and public.
The PFCG practiced different adaptation strategies for different caring dilemmas. They addressed their expectations for patients’ health condition, caring, themselves, and social supporting resources. There are “initial decision-making phase”, “midcourse adjustment phase”, and “after-transferring adaptation phase” embedded in their TDCL process including transferring out from ICU and admitting to RCW. They would evaluate the quality of care after VDP were admitted to RCW, and they may further decide to transfer the patients to another health institute if the quality of care in RCW did not meet their expectations.

Conclusions
This project first in-depth discover the difficulties and contributing factors perceived by VDP’s PFCG before and during the decision-making process of transferring VDP from ICU to RCW in Taiwan. Most of the PFCG in this project lacked of experiences of managing the complex transferring decisions for VDP. Their difficulties were involved with multiple aspects. Many of them worried about home care for patients due to lack of knowledge and competence. The HP in the hospital often hurries them to agree with the suggestions of transferring the VDP to RCW due to limited medical resources and regulations of NIGH. As such, the PFCG reported having suffered from intense psychological and tangible pressure. PFCG’s decision making patterns were not identical and were related to their previous decision-making experiences, and psychological preparations for taking care of long-term VDP.
It would be helpful to facilitate the consensus in transferring decision-making between PFCG and HP if HP could provide needed medical and social support information in advanced and throughout the transferring process in a more friendly and workable way. The development of transferring checklist would be helpful for PFCG to learn the progression of this issue. Then, their concerns and sense of helplessness will be better managed, and the quality of care will be more possibly acknowledged.
Future researchers are suggested to investigate the caring levels for VDP with different health and socio-economic conditions, and the effective ways to integrate the available caring resources for VDP to facilitate the reasonable TDCL. The findings of this project would provide first-hand evidence for health professionals to provide better quality of helping PFCG to make related decisions, and for administrators as well as government to improve the quality of related policies in the future.
<目錄>

致 謝 I
中文摘要 II
英文摘要 IV
目 錄 IX
圖表目錄 XII

第一章 緒論 1
第一節 研究背景與動機 2
第二節 研究問題 6
第三節 研究目的 7
第四節 名詞定義 8

第二章 文獻查證 9
第一節 呼吸器依賴患者的照護 9
第二節 主要照顧家屬的照護壓力與需求 16
第三節 決策過程與影響因素 20
第四節 過渡經驗之概念 27

第三章 研究方法 33
第一節 研究設計 33
第二節 研究對象及場所 37
第三節 研究工具 38
第四節 資料收集過程 40
第五節 資料分析方法 41
第六節 研究的嚴謹度 43

第四章 研究結果 46
第一節 研究對象基本資料 47
第二節 呼吸器依賴患者的主要照顧家屬對病患自加護病房轉入呼吸照護病房的決策過程、決策困境與影響因素 53
一、決策家屬的類型 53
二、決策過程的時間與定義 56
三、決策過程分期與各分期之決策困境 59
第三節 呼吸器依賴患者在呼吸照護病房期間其主要照護家屬所面臨的照護困境與影響因素 122
一、主要照護家屬所面臨的照護困境 122
二、主要照護家屬所面臨照護困境之影響因素 137
第四節 呼吸器依賴患者入住呼吸照護病房期間,其主要照顧家屬的調適策略 169
一、主要照顧家屬面對照護困境所發展的調適策略 169
二、主要照顧家屬面對照護困境的調適後狀況 185
第五節 呼吸器依賴患者入住呼吸照護病房期間,其主要照顧家屬的期望 191

第五章 討論 204
第一節 研究概念架構 204
第二節 呼吸器依賴患者的主要照護家屬對病患自加護病房轉入呼吸照護病房的決策過程、決策困境與影響因素之再探 211
一、不同決策類型的家屬其決策過程之比較 211
二、主要照護家屬對病患自加護病房轉至呼吸照護病房的各決策過程分期、決策困境與影響因素之討論 214
第三節 呼吸器依賴患者入住呼吸照護病房期間,主要照顧家屬的照護困境與調適策略之再探 230
一、面臨令人擔憂且無措的病況的影響因素與調適策略之再探 230
二、面臨未符合期待的醫療及照護品質的影響因素與調適策略之再探 233
三、面臨害怕積極性的醫療處置的影響因素與調適策略之再探 235
四、面臨不充裕的經濟與照護資源支持的影響因素與調適策略之再探 238
五、面臨混亂的生活與個人角色次序的影響因素與調適策略之再探 239
第四節 呼吸器依賴患者入住呼吸照護病房期間,主要照顧家屬的期望之再探 241
一、對患者病情的期望 241
二、對照護相關的期望 242
三、對個人的期望 244
四、對社會照護資源的期望 244

第六章 結論與建議 248
第一節 研究結論 248
第二節 研究限制 251
一、研究設計方面 251
二、取樣方面 251
三、收案場所 252
第三節 研究建議 253
一、護理臨床實務 253
二、護理教育 255
三、護理行政 255
四、護理研究 256
五、醫療政策 256

參考文獻: 257
中文部分 257
英文部分 261

附件一 訪談指引 275
附件二 研究同意書 278
附件三 研究進度甘特圖 279
附件四 研究流程圖 280
附件五 呼吸器依賴患者自加護病房或呼吸照護中心轉出之出院清單構想單 281
附件六 「全民健保呼吸器依賴患者整合照護前瞻性支付方式」試辦計畫支付標準 282


<圖表目錄>

表一 呼吸器依賴病患與主要照顧家屬基本資料一覽表49
表二 主要照顧家屬基本資料表51
表三 呼吸器依賴病患基本資料表52
表四 決策家屬類型與決策過程的時間與定義意義一覽表58
表五 被告知期之決策過程、決策困境與影響因素意義一覽表72
表六 磋商期之決策過程、決策困境與影響因素意義一覽表82
表七 無奈接受期之決策過程、決策困境與影響因素意義一覽表91
表八 挑選期之決策過程、決策困境與影響因素意義一覽表106
表九 決定期之決策過程、決策困境與影響因素意義一覽表112
表十 等待期之決策過程、決策困境與影響因素意義一覽表119
表十一 入住後評值期之決策過程、決策困境與影響因素意義一覽表119
表十二 呼吸器依賴患者入住呼吸照護病房期間,主要照護家屬所面臨的照護困境意義一覽表134
表十三 呼吸器依賴患者入住呼吸照護病房期間,主要照護家屬所面臨的照護困境之影響因素意義一覽表164
表十四 呼吸器依賴患者在呼吸照護病房期間其主要照護家屬所面臨的照護困境與影響因素關係表168
表十五 呼吸器依賴患者入住呼吸照護病房期間,主要照護家屬的
調適策略意義一覽表188
表十六 呼吸器依賴患者入住呼吸照護病房期間,主要照護家屬的
期望意義一覽表202
圖一 呼吸器依賴患者的主要照顧家屬對病患轉入呼吸照護病房的
決策過程,困境與期望的概念架構圖207
圖二 呼吸器依賴患者的主要照護家屬對病患轉入呼吸照護病房的
決策過程與決策家屬類型概念架構圖208
圖三 呼吸器依賴患者的主要照護家屬對病患轉入呼吸照護病房的
決策過程困境與影響因素關係圖209
圖四 呼吸器依賴患者入住呼吸照護病房期間,主要照護家屬所面臨的照護困境、調適策略與期望概念架構圖210
<中文部分>
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<英文部分>
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