學習與疾病共存及因應：血液透析病人的飲食水份自我管理經驗

Learning to Live with Illness: The Self-management of Fluid and Dietary Restrictions among Patients Receiving Hemodialysis

台灣是全球各國末期腎病患者盛行率及發生率最高的國家。腎衰竭病人除了需終身接受治療，及規則的透析之外，飲食水份的嚴格限制需同時遵從，以達到有效延長生命之目的。本研究旨在探討透析病人水份飲食的疾病適應歷程與自我管理經驗。本研究採質性研究設計，以焦點團體訪談法（focus group）進行研究資料的蒐集，共14位病人分別參與三次訪談，並以內容分析法進行資料歸納。研究結果將受訪者學習與疾病共存的歷程及因應的方式歸納為三個主題與六個次主題：主題一：身體的折磨－影響生活，開始重視該疾病產生影響，包括二個次主題：（1）一次又一次反覆發作的經驗，承受身體症狀折磨；（2）經由人親身經驗及周遭環境資源的影響，逐漸掌握自己體質。主題二：身體的調整適應－學習與疾病共存的因應策略，包括二個次主題：（1）個人對症狀發作歸因體認，發展自我照顧行為；（2）反覆的發作中，尋找症狀發作相關因素，吸取他人經驗，發展個人策略。主題二：腎友相互支持，發展益師益友的情誼，包括二個次主題：（1）彼此監督提醒，討論執行策略；（2）分享生活困境，彼此加油打氣。本研究歸納出血液透析病人在生活中採行水份飲食自我管理的調適經驗，從身體的症狀中覺察出與病體共存的自我管理策略，研究成果有助於透析護理團隊修訂護理指導模式與支持團體運作規劃。

Taiwanwas ranked the highest prevalence and incidence rate of end-stage renal disease (ESRD) worldwide. Adherence to limiting fluid intake and dietary restrictions was as well as important to attendance at regular hemodialysis sessions for ESRD patients Self-management on fluid and dietary restriction is crucial to help hemodialysis patients achieve body balance between normal life and disease control. The goal of this study was to explore the self-management experience on fluid and dietary restrictions among patients receiving hemodialysis. A qualitative study design was conducted. Fourteen patients were recruited and underwent a semi-structured interviewed by focus group method. Content analysis was used to data analysis. Patients’ experience of fluid and dietary restrictions could be described as a learning process of listening to patients’ own body during which they gradually learned to limit appetite in order to live with the life-long illness. Three main themes, consisting of 6 subthemes were: (1) uncomfortable physical sings stimulate the motivation of self-care management: endure suffering symptoms, gradually learn to understand own body; (2) learn to live with life-long illness: better self-care would repay by less physical uncomfortable, creating personalself-care strategies from other patients’ experience sharing; (3) build peer support relationship with other patients: strategies discussion, adherence behavior monitoring, and sharing lives’ experience.The findings of this study portrayed the hemodialysis patients’ perception on fluid and dietary restriction. It may serve as a reference for health professionals while designing or planning health care intervention.