呼吸照護病房末期病人主要照顧者的類型

Types of Caregivers of Terminally Ill Patients in a Respiratory Care Ward

我們在某區域醫院呼吸照護病房立意取樣了10位長期使用呼吸器病患的主要照顧家屬作為調查對象。希望藉由不同生長背景、不同價值觀念，以及不同社會環境下的主要病患照顧者所經歷生死議題的訪談，探究其可能類型及日後介入的型態。藉由深入訪談的質性分析發現：（1）主要照顧者可分樂觀希望、家庭倫理、臨終準備與缺乏支援等四大類型。（2）他們因照顧經驗而來的人生體悟，對應於人生苦難的態度，從避想、避談，到被迫面對。（3）隨著照顧患者的時間變化，不同時期的照護經歷對生命意義會產生流動也因此有著不同看法。根據調查結果，作者提出三點建議：（1）家屬需正視生死問題與替代學習的契機。（2）醫護人員可主動瞭解主要照顧者不同階段的需求，提供深切同理與具體的幫助。（3）推動社區善終照護準備計畫，增加安寧照護醫院與團隊數目，訓練開業醫師具備安寧緩和醫療之能力。

The experience of caring for terminally ill family member causes many caregivers begin to think about the meaning of life and death, and the purpose of life when facing the choice of life or death. This unique caregiving experience helps caregivers to be empowered as the first line of support. Ten family caregivers of patients located in middle Taiwan were interviewed in this purposive sampling study. Data were also analyzed by using quantitative methods to determine the effect of home caregivers' subjective perception to patients and disease severity on caregivers' burden and depression at the patient's end-of-life. This study aimed to understand the subjective perception of participants from different walks of life when confronting the nature of life-and-death in a respiratory care unit. The important findings of this study were: (a) four main categories can be divided based on the severity of the disease and the subjective anticipation of their families: type of optimistic hope, type of family ethics, type of ready-to-die, and type of lacking of support, (b) the realisation resulted from caring experiences are corresponding to the life attitude of suffering, from avoidance to think, silence on the subject, to be forced to face,(c) the life course and the meaning of life for the caregivers are kept changing from time to time. With the care-taking time lasting, the hope of family members change over time, especially do the main caregiver. The families tend to hold great hope of recovery, which is unrelated to the patient's age, regarding to patients that have neither history of chronic diseases nor accidents. These families seldom ready for the dying of the patients. Finally, the discussion and recommendations based on the key findings of the research, as well as the limitations of the study and future research directions were brought up.