背景:负责任的数字护理是指旨在增加通过道德决策开发的数字护理技术的可能性的任何有意的系统努力,对社会负责,并与受其影响的人的价值观和福祉保持一致。
目的:我们旨在为(1)设计“技术”;(2)塑造使用的“上下文”;(3)调整“用户”的行为,以指导对智障人士负责任的数字护理提供服务。
方法:考虑了三个案例:(1)设计Web应用程序以支持为智障人群准备膳食,(2)实施APP,帮助智障人士独立调节压力,(3)实施社交机器人,以刺激智障人士之间的互动和身体活动。总的来说,26个利益相关方参加了3个多利益相关方研讨会(案例1:10/26,38%;案例2:10/26,38%;案例3:6/26,23%)。“我们基于对使用该技术的经验和预期效果的自下而上的探索,确定了利益相关者的价值观。我们在特定的使用背景下为这些价值观制定了行动机会。定性数据进行了主题分析。
结果:总体而言,232效果,33个值,收集了156个行动机会。确定了一般和具体案例的主题。重要的利益相关者价值观包括护理质量,自主性,效率,健康,享受,可靠性,和隐私。积极和消极影响都可能成为利益相关者价值观的基础,并影响行动机会的发展。行动机会包括以下内容:(1)技术:技术的发展(例如,用户体验和自定义),技术输入(例如,膳食食谱,减轻压力的干预方案,和活动),和技术产出(例如,数据的存储和使用);(2)上下文:指南,培训和支持,政策或协议,并调整使用该技术的物理环境;以及(3)用户:将该技术集成到日常护理实践中,通过减少(例如,\“放手\”以增加智障人士的自主性),保留(例如,面对面接触),并添加(例如,评估时刻)护理专业人员的某些行为。
结论:这是第一项研究,通过自下而上地探索行动机会,以考虑利益相关者在设计技术方面的价值观,为智障人士提供负责任的数字护理。塑造使用环境,并调整用户的行为。虽然部分研究结果可以概括,具体案例的见解和互补的自上而下的方法(例如,预定义的道德框架)是必不可少的。这些发现代表了道德话语的一部分,需要采取后续行动,以满足利益相关者价值观的活力,并进一步发展和实施行动机会,以实现社会期望,道德上可以接受,和可持续的数字护理,改善智障人士的生活。
BACKGROUND: Responsible digital care refers to any intentional systematic effort designed to increase the likelihood of a digital care technology developed through ethical decision-making, being socially responsible and aligned with the values and well-being of those impacted by it.
OBJECTIVE: We aimed to present examples of action opportunities for (1) designing \"technology\"; (2) shaping the \"context\" of use; and (3) adjusting the behavior of \"users\" to guide responsible digital care for people with intellectual disabilities.
METHODS: Three cases were considered: (1) design of a web application to support the preparation of meals for groups of people with intellectual disabilities, (2) implementation of an app to help people with intellectual disabilities regulate their stress independently, and (3) implementation of a social robot to stimulate interaction and physical activity among people with intellectual disabilities. Overall, 26 stakeholders participated in 3 multistakeholder workshops (case 1: 10/26, 38%; case 2: 10/26, 38%; case 3: 6/26, 23%) based on the \"guidance ethics approach.\" We identified stakeholders\' values based on bottom-up exploration of experienced and expected effects of using the technology, and we formulated action opportunities for these values in the specific context of use. Qualitative data were analyzed thematically.
RESULTS: Overall, 232 effects, 33 values, and 156 action opportunities were collected. General and case-specific themes were identified. Important stakeholder values included quality of care, autonomy, efficiency, health, enjoyment, reliability, and privacy. Both positive and negative effects could underlie stakeholders\' values and influence the development of action opportunities. Action opportunities comprised the following: (1) technology: development of the technology (eg, user experience and customization), technology input (eg, recipes for meals, intervention options for reducing stress, and activities), and technology output (eg, storage and use of data); (2) context: guidelines, training and support, policy or agreements, and adjusting the physical environment in which the technology is used; and (3) users: integrating the technology into daily care practice, by diminishing (eg, \"letting go\" to increase the autonomy of people with intellectual disabilities), retaining (eg, face-to-face contact), and adding (eg, evaluation moments) certain behaviors of care professionals.
CONCLUSIONS: This is the first
study to provide insight into responsible digital care for people with intellectual disabilities by means of bottom-up exploration of action opportunities to take account of stakeholders\' values in designing technology, shaping the context of use, and adjusting the behavior of users. Although part of the findings may be generalized, case-specific insights and a complementary top-down approach (eg, predefined ethical frameworks) are essential. The findings represent a part of an ethical discourse that requires follow-up to meet the dynamism of stakeholders\' values and further develop and implement action opportunities to achieve socially desirable, ethically acceptable, and sustainable digital care that improves the lives of people with intellectual disabilities.