難治型憂鬱症患者主要照顧者照顧經驗之現象學研究

Abstract

背景與目的：難治型憂鬱症（Treatment-Resistant Depression, TRD）所造成的各種影響較其他類型的憂鬱症更難以克服，相比於其他精神疾病如思覺失調症、雙相情感障礙症之照顧需求也有所不同，對於照顧者是一大挑戰。然而目前針對TRD主要照顧者影響的研究十分稀少，照顧過程的真實景況與心路歷程難以得知。有鑑於此，本研究目的在於了解TRD患者之主要照顧者在患者疾病歷程中的照顧經驗及其因應與需求，作為發展未來TRD家庭介入措施之理論基礎及政策參考。 研究方法：研究者以現象學方法，於北部一家醫學中心進行立意取樣，並以半結構式訪談大綱，對受訪者進行60分鐘內的個別訪談。研究者於收案過程中考量異質性與資料飽和度後，從逐字稿內容分析中形成意義單元、共同類別與主題，構成此現象的本質結構，並以豐厚的訪談引用文字及專家同儕討論過程提升研究可信度，掌握質性研究之嚴謹度。 研究結果：本研究納入17位TRD患者之主要照顧者，平均照顧年數為17.82年，經研究者深入每位照顧者之照顧現象與歷程並予以剖析後浮現出三大主題：（一）「我願意為你」－照顧的本質：本主題說明照顧者以「在乎」為核心，進而呈現不同的照顧形式，研究者歸納為五個TRD照顧者的角色特性，分別為：可塑性、多重性、移轉性、難以取代性及有限性；（二）「回首來時路」－照顧者所經驗的照顧歷程：本主題顯示了TRD患者不同階段的變化如何影響主要照顧者的心理負荷感受，照顧者隨之發展出個別因應方法及求助行為；（三）「攜手過去迎向未知」－照顧者的回顧與反思：研究者在照顧者所分享之照顧歷程中，發現照顧者會對憂鬱症症狀、階段及是否可治癒等疾病歷程有所詮釋，形成多種對憂鬱症之自我疾病認知的現象；從本主題中還發現照顧者對於個別求助經驗產生不同感受與體會，並對未來外在資源介入有所期盼，研究者依此歸納出兩大核心需求：「暫時的休息」及「備足自我」。 討論與結論：本研究結果呈現出台灣本土文化在憂鬱症照顧行為下的關係義務感、孝道與情感連結在照顧動力中所扮演的獨特脈絡，以及照顧者在憂鬱症不確定感中仍能轉變心態的意境。研究者在彙整照顧者面臨的困境與需求過程中亦受啟發- 看見即便是長期照顧者，仍對外在照顧資源感到有限或不知從何查找的問題；研究者亦探討了傳統與民俗療法對照顧者的求助意義、求助行為與社會支持之交互作用對於照顧者的心理負荷調節，以及照顧者因著精神醫療專業與團隊關懷而持續信任醫療之現象。此研究補足了過往缺少華人憂鬱症照顧實證研究的基礎，並看見TRD與一般憂鬱症、雙相情感障礙症及思覺失調症在照顧困境、想法及因應之不同。最後，本研究提出政策、臨床、研究、與護理教育方面的建議，未來在TRD照顧者的健康知能傳播上，可朝提升正確資訊、改善污名效應、促進資源連結之方向努力。 關鍵詞：難治型憂鬱症、主要照顧者、現象學研究、照顧經驗、因應方法、照顧者需求。

Background and Objectives: The influence of Treatment-Resistant Depression (TRD) is more significant than other types of depression. The care needs of caregivers for TRD are more challenging compared to other severe mental illnesses such as schizophrenia and bipolar disorder. However, the evidence about care experience of TRD primary caregivers is fairly limited. The purpose of the present study was to understand the caregiving and coping experiences and the needs of primary caregivers of TRD patients. The results aim to serve as a theoretical basis and policy reference for the development of future TRD family interventions. Methods:Phenomenological research method was applied in this study. The researcher conducted the purposive sampling at a medical center in northern Taiwan. Individual interviews that lasted within 60 minutes were performed using a semi-structured topic guide. Data collection adhered to the principle of heterogeneity and data saturation, followed by the data analysis process of formulating meaninful units, categories, and common themes from the transcripts, which constituted the essence of the phenomenon of the TRD caring experience. The researcher ensured trustworthiness through the rich interview quotations and peer discussions in enhancing the credibility of the study. The researcher also grasped other ket considerations of rigor in the study. Results: A total of 17 primary caregivers of TRD patients were included, with an average caregiving duration of 17.82 years. Through exploring the caregiving phenomena, three major themes emerged, i.e., "Willingness to care- The essence of caregiving" showed the core concept of caring, leading to diverse caregiving presentation with five characteristics of the TRD caregiver role, i.e., flexibility, multiplicity, transferability, irreplaceability, and finity. "Looking back on the journey-The caring experience" showed how the psychological burden of primary caregivers was influenced by each TRD phase, leading to individualized coping experience and help-seeking behaviors of the caregivers. Finally, "Going through the past towards the unknown- Self-reflection and review" presented that the caregivers tend to self-interpret depressive symptoms, the fluctuated stages, and the possibility of recovery, leading to various illness representation of depression. The researcher also discovered that the caregivers have varied feelings and understanding about individual help-seeking experiences, leading to future development of external resources or interventions. Based on the above-mentioned findings, the researcher identified two core needs of caregivers: "temporary rest" and "self-preparation." Discussion and Conclusion: The study addressed the contexts of relational obligations, filial piety, and emotional connections in the caregiving experience for patients with TRD under Taiwanese culture. The mindset shift under the process of caregiving and uncertainty of depression was also explored. Moreover, the researcher was inspired by the multiple perspectives and needs of different caregivers, including limited perceived resources under long-term caregiving experience and the uncertainty of how and where to seek help for depression care knowledge and other recourses to share caregiver burden. Additionally, the meaning of help-seeking on traditional and folk therapies, the impact of the interaction between help-seeking behaviors and social support on the caregiver burden, and the significance of caregivers’ trust in psychiatric professionals and humanistic care were also highlighted in the data analysis. This study filled the research gap of depression caregiving phenomena within the Chinese population and highlighted the different caregiving situations and attitudes among TRD and bipolar disorder, schizophrenia and other subtypes of depressive disorders. Finally, the study proposed recommendations in policy, clinical practice, research, and nursing education. Efforts should be made to enhance the health communication among TRD caregivers by focusing on depression care knowledge access, stigma prevention, and resource linkage. Key words: Treatment-resistant depression; primary caregiver; phenomenological study; care experience; coping; caregiver needs.