另一片天空下—安寧療護病患家庭照顧者的正向經驗

邱于臻

指導教授 ： 潘淑滿

國立臺灣師範大學/教育學院/社會工作學研究所/碩士(2011年)

摘要

本文旨在瞭解在親人患病時，家庭照顧者所提供的直接、間接照顧工作，當中自我所感受的正向照顧經驗，以及在後續接受安寧療護團隊協助之經驗與建議。本研究使用質性研究方法，透過深度訪談之方式，訪談五位曾接受過不同醫院安寧療護服務之家庭照顧者，從中瞭解在親人患病、疾病確診、開始照顧到入住安寧病房、往生這一連串的過程，家庭照顧者的照顧工作與正向照顧經驗。
研究結果發現，家庭照顧者對於患病親人所提供之直接照顧，仍以生理照顧、身體清潔、患者病情協助、情緒支持等四方面為主；而間接照顧則包含醫療費用相關支出、心願完成等照顧。而在長期照顧之下，家庭照顧者往往出現生活模式改變、家庭成員互動開始有差異等的狀態。正向經驗則以肯定自我、親情回饋、情緒宣洩、保持積極態度為主，而後家庭照顧者開始有了維持身體健康之想法、願意社會付出、面對生死議題與預立後事、自我信心建立與維繫親人關係。在進入安寧的過程中主要有專業告知與自身概念兩種途徑，而接受服務的過程中，家庭照顧者仍對醫護人員與志工較有印象。
最後本研究建議安寧療護觀念須持續推廣與釐清，同時仍須提早介入時機與持續服務。此外，針對社會工作者在團隊中之辨別度，仍須靠與家庭不斷接觸，清楚說明可提供協助之部分，藉以期待可以讓家庭清楚瞭解社會工作之服務內涵。

關鍵字

家庭照顧者 ； 安寧療護 ； 正向經驗 ； 照顧工作 ； 照顧經驗

並列摘要

This article aims to understand When the relatives with cancer, family caregivers provide direct and indirect care work, which perceived positive self-care experience and received the assistant that hospice care team in the follow-up experience and suggestion. This study used qualitative research methods, through the way of depth interviews, I interviewed five family caregivers who had received different hospice services and to understand when illness in the family, disease diagnosis and began to stay in the hospice care, until died during continuous process that family caregivers’ work and positive experiences.
The study showed that family caregivers provided direct care are physical care, body cleaning, patient assistance, emotional support and indirect care are medical care costs, wish to completed, etc. In the long-term care , family caregivers often appear lifestyle changes, the interactive style with family members began to have differences. Family caregivers’ positive experience are self-affirmation, family feedback, emotional catharsis, keep positive attitude, and then family caregivers began to maintain body healthy, willing to do something for society , to face life and death issues and preparing a funeral, to establish self-confidence and to maintain family relationships. Family caregivers have two ways to enter the Hospice care which are professional informed and self-concept. And when family caregivers received services , they still have a deep impression on Medical staff and volunteers.
Finally, this study suggests that Hospice care must continue to promote ,clarify the concept, at the same time, it must be early intervention and ongoing services. In addition, to identify the degree of social workers in the team and let the family understanding which the content social work service, it still has to make constant contact with the family, and indicate clearly what social workers can help.

並列關鍵字

Family caregivers ； Hospice care ； Positive experience ； Care work ； Care experience

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