Cocreation of a Digital Tool for Proactive End-of-Life Communication: Protocol for a Participatory Action Research...

Area of Science:

• Digital Health
• Participatory Action Research
• End-of-Life Care Communication

Background:

• Proactive end-of-life (EoL) conversations are crucial for preparing individuals and healthcare professionals for end-of-life decision-making.
• Digital tools can support these difficult conversations, but their development processes require robust reporting.
• This project aims to co-create and test a digital version of the DöBra cards to promote early, proactive EoL conversations.

Purpose of the Study:

• To outline the protocol for a funded participatory action research project focused on co-creating a digital tool for proactive EoL conversations.
• To report on the initial steps undertaken in developing and testing this digital tool.

Main Methods:

• The project employs participatory action research principles with two work packages (WPs): WP A for iterative co-creation and WP B for exploring the tool's support for EoL conversations.
• Data collection includes interviews, meeting documentation, think-aloud exercises, observations, usability data, and event logs.
• Analyses will utilize qualitative, quantitative, and mixed-methods approaches, including thematic and longitudinal analyses.

Main Results:

• Ethical approval was obtained, and an advisory group with 16 members from 13 organizations was formed.
• A pilot version of the digital tool has been co-created and is currently undergoing field testing with 42 testers.
• Data analysis is pending, with a public launch planned for 2026.

Conclusions:

• The co-creative process has the potential to yield a digital tool for proactive EoL conversations that reaches diverse end-users.
• This digital tool can help normalize discussions about death as a natural part of life.
• The project aims to increase the societal reach of EoL conversations through accessible digital technology.