殘留社會下的透析聲音：洗腎者的生病經驗敘事與心理適應歷程探究

The Voices from the Remission Society: Exploring the Narrative of Illness Experience and Psychological Adaptation Process of Patients with Renal Failure

陳美貴(Mei-Kuei Chen) ； 林耀盛(Yaw-Sheng Lin)

《高雄行為科學學刊》 4期 (2014/05) Pp. 29-55

https://doi.org/10.29854/TJKBS.201405_(4).0002

摘要

目的：本研究以參與觀察、深度追蹤訪談方式，探索瞭解透析者罹病經驗意義和生活適應關係。方法：本研究共訪談10位（8位女性、2位男性）罹患末期腎病，必須接受常規洗腎者。每名參與者間隔半年追蹤續訪，前後訪談兩次。訪談記錄方式為知情同意後錄音，再將錄音檔案謄成逐字稿，並加以閱讀與分析。結果：在生病經驗的受苦關係轉化方面，共有兩個主題（一）聚焦疾病本身與受苦位移之間。（二）轉向關注他人與共締命結之間。在治療情節的再適應歷程方面，發現兩個主題（一）回歸如常的存有。（二）回顧歷史的經驗。討論與建議：患者的疾病經驗從「病人身分」轉換到「人格認定」，亦即患者從「病人角色」轉化至具「自主性格」的個體。而後，再從自主性格個體，轉化到在世存有的關係，得以關注他人，並體認「我們感」連結體的關係締結。

關鍵字

洗腎 ； 疾病經驗 ； 適應 ； 受苦

並列摘要

Objective: There has been little research that explores the narratives of illness experience and coping processes of patients with terminal renal failure. Even fewer studies have attempted to understand these patients’ subjective, first-hand experience over time. This study aims to investigate and address these gaps in literature. Method: Ten participants (eight women and two men) with renal failure were recruited from a local hospital in southern Taiwan. Each was interviewed twice, first at baseline and then 6 months later. Taking a qualitative approach grounded in phenomenological psychology, this study conducted in-depth interviews by which researchers strived to observe, analyze and understand, from their first-person perspective, how these patients coped with their illness. Results: Two over-arching themes emerged in the analysis on the transformation of experience of suffering; (1) ’in-between focused disease progress and normalize enduring suffering’, and (2) ’in-between caring relationship with the other and reconstructing bond with family on the same boat’. For the adaptation process, two themes were identified: (1) the return to everyday normality and (2) review of totality of life experience. Discussion and Conclusion: It is learned that these patients expressed unique views and interpretations of their illness experience than would others from the outside. They are in a state of transformation from ’patient role’ to ’personhood’. Furthermore, they are facing the challenges of becoming the relational survivors of being in the world. The forging of sense of ＂we-ness＂ and meaning of resilience are discussed.

並列關鍵字

dialysis ； illness experience ； adaptation ； suffering