“我离开后会发生什么？”：家长对技术支持智力障碍成人独立生活的看法
"What's going to happen after I'm gone?": Parent Perspectives on Technology in Supporting Independent Living for Adults with Intellectual Disabilities
- Oakland University（奥克兰大学）
机构由 AI 辅助整理，请以论文原文为准。
中文总结 AI 辅助
本研究通过访谈16位家长，探讨智力障碍成人过渡至半独立生活时辅助技术的支持作用，提出四项设计原则以促进独立性。
中文摘要 AI 辅助
智力和发育障碍（IDD）成人正越来越多地从家庭住所过渡到半独立生活。当父母移交主要照护者角色时，他们在安排持续且高质量的照护方面面临诸多挑战。我们的研究聚焦于理解这些照护常规。通过关注父母独特的亲身经历——他们对成年子女的需求拥有广泛的显性和隐性知识——我们旨在描绘他们所提供的照护管理。这一基础性理解对于确定辅助技术如何有效发挥关键作用以支持IDD成人度过此过渡期至关重要。在本研究中，我们访谈了16位刚开始这一过渡的IDD成人的父母，以了解：1）他们目前如何提供日常生活支持，以及什么使他们的支持有效；2）他们对技术使用的经验和看法；以及3）他们设想辅助技术如何成功融入其成年子女的新家或与其他支持相结合以促进独立性。我们的主题分析产生了四个主题：常见的支持模式、日常常规内部的支持成长、跨过渡期照护连续性的脆弱性，以及参与者对辅助技术的看法和经验。基于这些发现，我们得出了面向成长的辅助技术的四项设计原则。这些包括过渡前入职以捕捉照护者的隐性知识；面向长期成长的结构化支架；响应日常变异的自适应感知；以及针对个体的定制化与照护网络一致性之间的平衡。
英文摘要
Adults with intellectual and developmental disabilities (IDD) are increasingly transitioning from family homes towards semi-inde\-pendent living. As parents hand off the role of primary caregiver, they face numerous challenges in arranging consistent and quality support. Our research centers on understanding these caregiving routines. By focusing on the unique lived experience of parents, who possess extensive explicit and tacit knowledge of their adult child's requirements, we aim to map the management of care they provide. This foundational understanding is essential to identifying how assistive technologies can effectively serve a key role in supporting adults with IDD in this transition. In this work, we interviewed 16 parents of adults with IDD beginning this transition to understand: 1) how they currently provide support for daily living and what makes their support effective; 2) what their experiences and perceptions are regarding the use of technology; and 3) how they envision assistive technology successfully integrating with their adult child's new home or with other supports to promote independence. Our thematic analysis produced four themes: common modes of support, inside the routine to support growth, the fragility of continuity of care across transitions, and participants' perceptions and experiences of assistive technology. Building on these findings, we derive four design principles for growth-oriented assistive technology. These include pre-transition onboarding to capture caregiver tacit knowledge; structured scaffolding towards long-term growth; adaptive sensing that responds to day-to-day variability; and customization for the individual balanced with consistency for the care network.
