選擇、挑戰、穩定、履約──家庭照顧者的居家安寧照護經驗

Choosing, Challenging, Stabilizing, and Fulfilling: The Experiences of Palliative Care at Home as Perceived by Family Caregivers

背景：自2000年健保納入安寧病房住院與居家安寧療護補助，但居家安寧療護的利用率偏低。目的：探討家庭照顧者所感受到的居家安寧照護經驗。方法：本篇質性研究採半結構性訪談，邀請六位北部某醫院居家安寧照護兩週以上的家庭照顧者進行深度訪談。結果：家庭照顧者所感受到的居家安寧照護經驗歸納出四大主題：（一）選擇居家安寧照護的旅途：考量病人心願及照顧者的能力、以醫院的支援為後盾、（二）挑戰居家安寧照護的負荷：從害怕及揣摩中學習照顧技巧、身心俱疲需要宣洩及喘息、（三）追求居家安寧照護的穩定：依賴專業團隊的支持與諮詢、看見居家安寧價值、（四）履行在宅善終的約定：為好走及善別做準備、抒發悲傷適應新生活。結論／實務應用：居家安寧照護提供病家能方便、親密且安心的家，但家庭照顧者需要學習照顧技能，並承擔照顧負荷，居家安寧療護人員已能覺察並提供家庭照顧者的內外在需求，幫助病家維持居家生活的穩定及處理善別，展現居家安寧照護的價值，值得進一步推廣。

Background: Although the Taiwan government has subsidized the provision of palliative care at home since 2000, the utilization rate of this service has been low. Purpose: The purpose of this research is to explore the experiences of palliative care at home as perceived by family caregivers. Method: This qualitative study used semi-structured interviews to collect the data. Six family caregivers who had been providing home-based palliative care services for at least 2 weeks were invited to participate. Result: Four themes related to the care experiences of the participants emerged: (1) Choosing palliative care at home for the end-of-life journey: Considering the wishes of patients and the capacities of caregivers, with hospitals providing powerful support to caregivers; (2) Facing the burdens of providing palliative care in a home setting: Determining the caring skills while feeling fear and stress, and needing to resolve this stress and achieve a respite; (3) Pursuing stable home palliative care: Relying on consultations with the professional palliative care team for information, support, and insights regarding the value of home palliative care; and (4) Fulfilling the promise of a good death at home: Preparing the patient to say goodbye and to experience a peaceful death and family members to express their sadness and adapt to a new life. Conclusions/Implications for Practice: Home palliative care services help provide patients and their families convenience, intimate care, and reassurance at home. However, all caregivers must be properly trained in caring skills and the skills necessary to sustain their long-term care responsibilities. Home palliative care services have been described as the internal and external needs that patients and families require to maintain a stable quality of life and as the comfort required by the bereaved family members. The findings of this study demonstrate the value of home palliative care and of promoting home palliative care at the end of life.