本研究目的在了解呼吸器依賴病患家屬拒行氣切手術之決策歷程,及內在心理調適過程。藉由家屬內在主觀經驗及尋求的資源,以顯露家屬面對照護呼吸器依賴病患的經驗本質。採現象學研究法,以立意取樣方式收案,共收集八名病患家屬進行半結構式回溯性訪談,再應用反思性分析七步驟:觀察、說明、反思、評估和信念和意願、經驗、分析、檢驗等進行資料歸納及分析。研究結果顯示拒絶氣切手術的家屬對病程決策的內在主觀經驗之覺知和決策歷程:承受身心勞務,包含面對親人苦難的煎熬及喚起抉擇衝突;權宜治療風險,包含搜尋澄清、風險損失評估、及耽心尊嚴和身體完整的損傷;影響病程決策的因素而規範後續照顧,包含:決策授權、權宜決策執行、及順應。 瞭解病程的覺知在於經驗、適應、體認、認知及應變、與創造,結合風俗文化信念、關注與認同,澄化維生價值、探討醫療自主權的影響力、及下轉機構的憂慮,提供正確適宜的醫療資訊,並給予充分或合宜時間的疑慮澄清和回應,運用決策文化之社會規範和風俗文化的影響,提供護理時適切的幫助和支持規範後續的照顧,可提供給臨床照護的醫療從業人員及社會大眾對病程覺知與決策過程蛻變的了解,且反思如何在各個階段該給予什麼適切的協助。
This study was to explore decision making process and psychological adaptation of family members who refused using tracheostomy in ventilator-dependent patients. The essence of caring experience was uncovered through family members’ inner subjective experience and resources they searched for. A phenomenological research design was adopted, and purposive sampling was used to recruit eight family members. Data were collected using a semi-structured retrospective interview and were analyzed applying a reflective analysis with seven steps including observing, accounting, reflecting, valuing, believing, and willing, experiencing, analyzing, and examining. Results showed that awareness and decision making process of inner subjective experience of course of disease among family members who refused tracheostomy for ventilator-dependent patients were: to bear physical and emotional labor, including facing family who suffers from illness and provoking decisional conflict; to assess risk of treatment, including searching for clarification, assessing loss and risk, and worrying about impairment of dignity and bodily integrity; to affect the factors associated with decision making process of course of disease and then to regulate follow-up care, including delegating decision making authority and assessing the execution and compliance of decision making. The study suggests the need for understanding that the awareness of course of disease includes experience, adaptation, realization, cognition, coping and creation, for integrating customs, cultural beliefs, concern and recognition, for clarifying living values, and for exploring both the impact of medical autonomy and the worries of referral institutions. The study also suggests nursing staff provide adequate medical information and enough time to respond to doubts, apply the effects of decision making culture such as social norms, customs and culture, and give assistance as well as support in nursing and regulating follow-up care. The study could help clinical nursing staff and the public understand the transforming process of awareness and decision making of course of disease and could be a good reference for reflection on meeting the needs of patients and family members at each stage.
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