引用
醫用者的運籌行動:形塑早期療育的照護軌跡
Logistic Action by Service Users: Shaping Care Trajectory in Early Treatment Systems
作者:曾凡慈(Fan-Tzu Tseng) | 首次發表於 2020-06-04 | 第 45 期 December 2010
DOI:https://dx.doi.org/10.6786/TJS.201012_(45).0002
研究論文(Research Articles)
論文資訊 | Article information
摘要 Abstract
相較於過去對障礙兒童親職的研究,經常使用心理病理學的取向,來關注家長的壓力與適應過程,本研究提出「運籌行動」(logistic action)來概念化參與早期療育的家長,如何扮演積極形塑照護軌跡的行動角色。經由訪談24位主要照護者,以及分析網路上詳細記錄孩子早療史的部落格,本研究發現這些家長為了回應台灣當前多頭馬車式的早療服務體系,以及孩子發展遲緩高度變動的問題軌跡,必須在各種療育服務的生產端與孩子作為消費端之間,發展出細密運籌的能力,透過密集的訊息工作、連結工作與身體工作,規劃出全面性的療育計畫並付諸 實踐,讓表面上唯專業主導的療育工作得以進行。這種運籌式的醫用者行動,將增益過去文獻中對醫用關係的理解。因此,遲緩兒的家長不只是作為醫療服務接受者,需要專業者來照顧他們的需求,也不僅是擁有對孩子的專屬個人知識,需要專業世界加以傾聽,而是應認可他們作為運籌師的角色,相較於只從事片段工作的個別專業者,更具備為孩子統 籌治療方案並適時調整的資格與知能。

關鍵詞:發展遲緩、照護軌跡、運籌行動、醫用關係、早期療育
Past research on parenting disabled children has mostly used a psycho- pathological approach to explore stress and adjustment. In this study I will propose a “logistic action” concept to analyze parental actions in the context of Taiwan’s Early Treatment System (ETS). Data from interviews with twenty-four parents/caretakers of children with developmental delay indicate that they are capable of actively shaping their children’s care trajectories. Biographical records written by parents and published on the Internet also support this finding. To enact the multi-dimensional and disunited ETS, parents must develop multiple sophisticated logistic actions in order to deal with the highly problematic trajectory of developmental delay. Taking on the role of logistician requires intensive information, articulation, and body work in order to organize and implement an individualized and flexible child- raising scheme. This concept of logistic action can enrich our understanding of user-professional relationships.

Keywords: developmental delay, early treatment, care trajectory, logistic action, user-professional relationship