安寧居家主要照護者預期性哀傷經驗探討

近幾年安寧緩和醫療的推行，安寧共照的觀念開始落實於醫療團隊間，所謂安寧療護並非放棄生命，也並非僅於安寧病房進行，而是隨時隨地皆可以執行安寧療護，讓生命最後的關頭，有尊嚴、不留遺憾的離開。安寧居家療護將照顧末期病人的責任由病房轉載至家庭成員負擔，這樣的過程也讓主要照護者承受生理、心理莫大的壓力。基於臨床所見並感受其主要照護者照護末期病人之壓力，以及護理人員哀傷處理經驗的不足，故企望藉由本研究探究安寧居家主要照護者預期性哀傷經驗。本研究採取探索性之質性研究設計，針對台南市某醫學中心接受安寧居家療護之主要照顧者進行收案，完成參與者共計16位。以開放性深度訪談法(in-depth interview)進行資料收集，於居家自然的環境中進行深入訪談，引導末期病人之主要照顧者表達居家照顧期間之照顧經驗與感受。訪談者在資料收集過程依據半結構式的訪談大綱進行訪談，亦增加田野參與觀察法，進行田野筆記等相關資料收集。文本錄音檔內容轉譯文字稿，經質性資料分析法-主題分析(themetic analysis)，深入探究主要照顧者於面臨預期性哀傷經驗、心境轉變的過程，依據逐字稿內容依序進行譯碼(code)、發展概念類組(category)、引出主題(theme)。研究結果初步完成102個譯碼，並將類似概念重新淬選，抵定最終61個譯碼，並依其譯碼內容進一步歸納出十四個次主題，四個主題，分別為「生命本質的顯現與內蘊」、「死亡前的進退藝術」、「臨別前的靈悟與禮物」、「調節因應的控制與失控」，彼此互為影響，為一持續動態過程。研究結果不僅可提供安寧照護專業人員針對安寧居家主要照護者在親人臨終時預期性哀傷的引導，並作為未來安寧居家於哀傷輔導過程的指引依據，擴展本土化的預期性哀傷輔導措施，於護理教育層面，提供完整生死教育的教材，扎根正向的護理態度，對末期病人及其家屬提供更適切的護理服務。

關鍵字

安寧居家；主要照顧者；預期性哀傷

並列摘要

Thanks to the promotion of hospice and palliative care in recent years, the concept of hospice shared-care has begun to become a reality among medical teams. The so-called hospice care does not mean giving up on life and its implementation is not restricted to hospice units, but can be anywhere anytime to ensure that patients leave the world with dignity and without regrets at the end of their lives. Home-based hospice care shifts the responsibility of taking care of terminally ill patients from hospital units to their family members, but this process puts main caregivers under tremendous physiological and psychological stress. Based on clinically observed and perceived stress experienced by main caregivers for terminally ill patients and inadequate experience among nursing staff in giving support for dealing with grief, the author intended to investigate the experience in helping main caregivers in home-based hospice care to deal with anticipatory grief through this study. This study was an exploratory qualitative research on 16 participants sampled from the main caregivers providing home-based hospice care for patients from a medical center in Tainan City, Taiwan. Data was collected using open-ended in-depth interviews that guided the main caregivers for terminally ill patients to voice their experiences and feelings while providing home care in their natural home environments. The interviewer conducted the interviews based on a semi-structured interview outline in the data collection process and added field-based participant observation to obtain field notes for further data collection. The paper-based content in interview recordings was translated into a transcript that was subject to the thematic form of qualitative data analysis for further exploration into the anticipatory grief experienced by the main caregivers and how their states of mind changed through sequential coding of the transcript content, development of conceptual categories and theme induction. Out of the 102 codes obtained from the initial findings, 61 codes were finalized through refined filtering of similar concepts and were divided based on their content into 14 subthemes under 4 themes, which included ‘revelation and implications of the nature of life’, ‘the art of coping with one’s own impending death’, ‘self-realization and gifts before passing’ and ‘adjustment for controlled coping and loss of control’, all of which interacted and constituted an ongoing and dynamic process. The results of this study can provide guidance for hospice professionals on helping main caregivers in home-based hospice care to cope with anticipatory grief when their terminally ill family members are near their end. They can also serve as the basis for guiding the process of grief counseling for caregivers in home-based hospice care, expanding localized grief counseling measures, and providing comprehensive materials for life and death education in nursing that help positive nursing attitudes to take root, thereby providing more appropriate nursing services for terminally ill patients and their families.