Abstract
PURPOSE: To further develop and begin to validate the Framework for Compassionate Use of Technology with Persons with Cognitive Decline and their Care Partners. METHODS: We used an experience-based co-design approach. Phase 1 involved interviews with participants with cognitive decline and their care partners to increase our understanding of their perceptions of home monitoring technology use. Phase 2 involved Focus group meetings with participants with cognitive decline, their care partners, healthcare providers and technology researchers to seek feedback on the framework and develop tools to support a compassionate approach to the use of home monitoring technology. RESULTS: Domains and categories identified during interviews were (a) Ethical Principles including Addressing Privacy Concerns, Considering Dignity, Balancing Risks with Benefits, and Supporting Autonomy; and (b) Usefulness and Preferences including Technology Utility, Need for Maintenance, and Preferences for Information Receipt. These findings along with focus group discussions aligned with and further elaborated the framework. Focus groups also informed the development of tools to support a compassionate approach to recommending and selecting home monitoring technology. CONCLUSIONS: The study provides initial support for the framework. More research is needed to test applicability and the usefulness in practice settings.