失智症家屬照護指南之設計與研究

Abstract

本研究目的為設計以使用者（失智症照護家屬）為中心之改良版衛教手冊，使家屬能即時從中汲取、理解並學習照護必備資訊及實務技巧，滿足渠等需求，並強化其照護角色之主動性。具體目標包括：（一）調查失智症照護家屬的知識性需求；（二）發展「以照護家屬為中心」的衛教教材設計準則；（三）驗證本研究設計手冊之理解度與可行性。

研究設計之失智症衛教手冊，以「憶念（取自回憶與信念）」為名，係運用創新產品設計與開發方法進行設計與改良，內容含括朗朗上口且實用的閱讀策略、易讀的文本、主題式架構編排、精心繪製的資訊圖像、在地照護實例及鮮明角色設計。研究發展流程中，照護家屬持續以共同創作者的主動角色參與其中，透過反覆驗證再設計，避免使用者因健康識能及照護能力不足，無法自手冊中獲取醫護知識及心理支持。專家深度訪談、文本可讀性指標自動化分析系統及放聲思考法為本研究驗證可讀性、理解度及使用性的重要工具。

本研究主要效益係透由資訊圖像再設計改良現行衛教手冊，重新轉化專業醫護資訊，使本研究設計之「憶念」手冊，能滿足臺灣地區失智症照護家屬的實務需求，協助他們在照護過程中扮演更主動的角色。本研究之整體架構亦可作為未來衛教手冊開發人員欲在設計開發流程同時納入領域專家及目標使用者時的重要參考。

The research work aims to investigate dementia family caregivers’ (DFCs’) information needs and provide a written health education material (WHEM) for this targeted group which will satisfy their needs and enhance their role as active caregivers. The objectives of this research are to (1) explore current usage problems of WHEMs on dementia in Taiwan, (2) design and develop a dementia care handbook from a family-caregiver-centred perspective, and (3) evaluate the overall feasibility of the proposed WHEM and report preliminary data.

Developed within the innovative product design and development (IPDD) framework, the proposed WHEM consists of a catchy and useful reading strategy, easy-to-read (ETR) texts, a thematic organisation, well-tailored infographics, quotes and actual caregiving experience from previous caregivers, and vivid illustrated characters. The design and development process involved several iterative steps to adapt the information into local circumstances, and to engage DFCs as active co-designers, so that the proposed WHEM can provide requisite information and support for DFCs regardless of their literacy level and healthcare competence. In addition, in-depth expert interviews, the Chinese Readability Index Explore (CRIE) 3.0, the Patient Education Materials Assessment Tool for Printable Materials (PEMAT-P), and a Think-Aloud method are used to thoroughly evaluate the readability, understandability, actionability, and usability of IDEA.

The primary benefit of this proposed WHEM, IDEA, named as “IDEA (the combination of Memory and Faith in Mandarin)”, is that the simplified healthcare information in the form of infographics can fit into DFCs’ practical needs and local context. The IPDD research framework serves as a solid guidance for designers to evenly consider design thinking, product utility and validation. Therefore, a user-centred and health literacy friendly WHEM is adapted and proposed for practical use. DFCs can obtain requisite caregiving information from WHEMs based on their own needs and current circumstances, thus enhancing their role as active caregivers.