從護理人員觀點看末期病人接受家人照顧之心理負擔現象

The Perspectives of Hospice Nurses to Explore Phenomena of Terminally Ill Patients' Self-Perceived Burden that Cared by Family Members

鄧文章(Wen-Chang Teng) ； 李佩怡(Pei-Yi Li)

《安寧療護雜誌》 19卷3期 (2014/11) Pp. 229-246

https://doi.org/10.6537/TJHPC.2014.19(3).1

摘要

目的：末期病人因為接受家人照顧而形成自覺的心理負擔，可能影響病人的醫療決策及其安適感。目前台灣僅有少數研究針對末期病人被家人照顧所引起的心理困擾進行研究。方法：自2014年4月到2014年6月，研究者藉由網路邀請安寧護理人員匿名回答一個開放問題，本研究嘗試了解末期病人於家屬照顧期間出現的「自覺負擔」現象。研究者根據護理人員所撰寫的文字資料為研究文本，以內容分析法進行文本分析。結果：計44位護理人員在網路上完成填答，其中，安寧病房護理人員的比例最多，佔47.7%，其次為安寧共照護理人員，27.3%；及安寧居家護理人員，13.6%。研究歸納由護理人員的觀點看接受家人照顧的末期病人，其心理負擔感受的現象為：（一）接受家人照顧的生死兩相安、（二）接受家人照顧的矛盾：既「期待」又「擔憂」、（三）面對照顧者的自責、愧疚，與面對自己的自我挫敗、（四）隱匿、封閉自己的需求，不假他人照顧、（五）推開家人，以阻止家人繼續付出、（六）期待死亡，以便減輕家人負擔。並進行討論。結論：根據護理人員的經驗，觀察到末期病人接受家人照顧時存在著心理負擔，此現象是一種存在於關係網絡的心理困擾。因此，家屬與醫療團隊難以注意病人的真正需求。研究者建議醫護團隊對病人「自覺負擔」的心理困擾有更多瞭解，才能有助於病人及家屬因應。

關鍵字

自覺負擔 ； 末期病人 ； 家人照顧 ； 安寧護理人員

並列摘要

Purpose: The phenomena of terminally ill patients' self-perceived burden that cared by families may influence patients' medical decision and wellbeing. There are too few studies to understand these psychological distress during being cared by their families, especially in Taiwan. Method: This research tries to understand the phenomena of terminally ill patients' self-perceived burden that cared by families during hospitalization. The researchers invited hospice nurses anonymously to answer one open question in internet from Apr to Jun 2014. The researchers analyzed these contents that wrote by nurses by qualitative content analysis. Results: There are 44 hospice nurses file in the question through internet, including 47.7% hospice ward nurses, 27.3% hospice share-care nurses and 13.6% hospice home-care nurses. According to their perspectives, the phenomena of terminally ill patients' self-perceived burden in Taiwan are as follows: 1) Both patients and their families feel peaceful during caring process; 2) Patients feel conflict of being cared - expected but worried; 3) Patients feel self-blaming and self-defeating toward their families; 4) Patients tend to hide their needs; 5) Patients hinder their families to give care continuingly by push them away; 6) Patients expect to die in order to decrease burden of family as soon as possible. Conclusion: Based on the hospice nurses' experiences, the terminally ill patients who cared by their families felt psychological distress. This kind of psychological distress is existed in interpersonal relationship network of terminally ill patients. Therefore, family members and medical team members can hardly notice patients' real needs. Researchers suggest that medical team should have more understanding regarding patients' psychological distress of self-perceived burden, and may assist patients and their families to copy this distress.

並列關鍵字

self-perceived burden ； terminally ill patients ； cared by families ； hospice nurses