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A Family-Caregiver-Centred Dementia Care Handbook: Design and Validation
Tseng, Kevin C.
Dementia family caregivers
innovative product design and development
written health education material
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.
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