ABSTRACT

Self-determination is a universal right and a central concept in support processes for people with disabilities. Enabling a disabled person to make choices, and to have a life plan not influenced by the entourage, are major challenges. In this context, the aims of the present study are: 1) To design and develop a digital assistant for the elaboration of a life plan that is easily usable by future users (adapted to the cognitive characteristics of people with Down Syndrome (DS); 2) Assess the impact of the use of this assistant on the life plan, autonomy, and quality of life of people with DS. The design process resulted in the development of a mock-up, two prototypes and the final version. Each version has been evaluated (user scenarios to evaluate objective usability and SUS scale and QUEST 2.0 to assess subjective usability and user satisfaction) and improved taking into account the comments from the previous step (37 adults with DS in total). Results confirm the relevance of the improvements made between the different versions and provide a final version offering a high degree of usability. The second objective was to assess the ability of the assistant (final version) to improve the life plan and the autonomy of such people. Evaluations were carried out on 9 adults (5 using the assistant and 4 control subjects who used a computer-based word game, during the same period) using questionnaires relating to the life plan, autonomy, and quality of life of the users. After one month of using the assistant, a positive impact was observed (compared to the control group) on the richness of the life plan and on the person’s autonomy using the Ryff psychological well-being scales.

摘要

自决是一项普遍权利，也是残疾人支持过程中的核心概念。使残疾人能够做出选择，并制定不受随行人员影响的生活计划，是一项重大挑战。在此背景下，本研究的目的是：1) 设计和开发数字助理，用于制定未来用户易于使用的生活计划（适应唐氏综合症 (DS) 患者的认知特征）； 2) 评估使用此助手对 DS 患者的生活计划、自主性和生活质量的影响。设计过程导致开发了一个模型、两个原型和最终版本。每个版本都经过评估（评估客观可用性和 SUS 规模的用户场景和 QUEST 2. 0 来评估主观可用性和用户满意度）并考虑到上一步的评论进行改进（总共 37 名患有 DS 的成年人）。结果证实了不同版本之间所做改进的相关性，并提供了具有高度可用性的最终版本。第二个目标是评估助手（最终版本）改善这些人的生活计划和自主权的能力。使用与用户的生活计划、自主性和生活质量相关的问卷对 9 名成人（5 名使用助手和 4 名使用基于计算机的文字游戏的控制对象，在同一时期）进行了评估。使用助手一个月后，