腹膜透析隱形實作與軌跡

Illness Trajectories and Invisible Work in Peritoneal Dialysis Patients' Practice

對標準化的醫療體系來說，處於不同疾病歷程中的病患實作往往是隱形、看不見的。台灣既有的腹膜透析推廣方案，也忽略了病患的觀點。本文由醫療實作研究的相關研究出發，以患病軌跡等概念為基礎，描繪透析醫療病患的不同歷程與實作經驗，並指出其中病患隱形工作對既有醫療實作的啟發。本文以四十八位透析病患的集體訪談資料，以及實地觀察八位病患的相關醫療操作，進行分析。結果發現，根據病患對於選擇透析的經驗與評價為主，以實作歷程與透析軌跡型態為主軸，可以初步區分出：進取、追隨、反悔、受害、積極開創與消極開創等類型。本文並進一步討論這些不同類型的行動者，在情感、社會性、醫療知識與技術上的隱形實作。這些類型與經驗，可以被視為是病患在患病歷程中，為了協調生活規劃與醫療規劃，以使自身有能力面對醫療與生活的努力。最後，本文除了指出患病軌跡類型與隱形實作對現行標準化醫療操作的實務意涵，核心建議是透析推廣除了要納入病患觀點外，不應只是「如何挑選具有自主能力的病患，並將病患訓練為標準、安全的腹膜透析操作者」，而是「如何面對能力不一的病患，提供各種支持，使其有能力，安全且彈性地協調腹膜透析操作與生活」。本文並藉此指出本研究對醫療社會學及相關理論與規範的相關意涵。

Patients' work over the course of an illness is usually invisible to standardized medical systems. This is also the case in a project for promoting peritoneal dialysis (PD) in Taiwan. Based on insights into medical practices, this paper explores different types of PD trajectories and experiences and suggests implications for medical practices. Fieldwork, consisting of interviews with 48 patients in focus groups and 8 patients at home practice, yielded six types of PD trajectories--progress, follow, regret, victimized, active explore, and passive explore. Patients' different invisible work on emotion, sociability, and medical knowledge and techniques are also discussed. These efforts illustrate the struggles that patients coordinate through their daily lives and medical schemas. The paper concludes by explicating how the discussion of illness trajectories and invisible works contribute to medical practices, medical sociology, and other theoretical and moral issues. The rationale is that the medical profession and policy makers should take patients' point of view into account and try to support patients with different abilities and backgrounds to do dialysis safely and flexibly rather than choose the already capable patient for the standardized dialysis.