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

Background: Proactive end-of-life (EoL) conversations can help individuals, their significant others, and health care professionals be better prepared to confront dying and future EoL decision-making. Talking about EoL issues may be unfamiliar and difficult; tools are increasingly used to support such conversations. While using digital tools presents many advantages, the development processes of such are seldom robustly reported. The project outlined here has the overall aim of further developing and investigating promotion of early, proactive EoL conversations by cocreating and testing, together with potential community-based end users, a digital version of an existing tool, the DöBra cards. Objective: The aim of this paper is to outline the protocol for a funded participatory action research project, cocreating a digital tool for proactive EoL conversations, as well as reporting initial steps taken in the project. Methods: Project design is overall inspired by participatory action research and contains 2 work packages (WPs). WP A encompasses the iterative cocreation process of adapting the initial prototype into a relevant digital tool for the public in Sweden. WP B explores if and how the digital tool can support potential end users and significant others in proactive conversations about future EoL values and preferences. Digital tool development is inspired by a process map and will be conducted in collaborative groups. Data collection for both WPs includes repeated interviews with cocreation partners and meeting documentation. Data from field testing of the tool will encompass audiotaped think-aloud exercises, researchers' observations, usability data, and event log data. Analyses will be qualitative, quantitative, and to some extent mixed methods, and may include inductive thematic analyses, longitudinal qualitative analysis, and descriptive and inferential analyses. Results: Following funding and project start in January 2024, ethical approval was granted by the Swedish Ethical Review Authority. A stepwise recruitment strategy focusing on heterogeneity yielded an advisory group with 16 members from 13 organizations, representing broad segments of society despite some drop-off. The cocreation process, together with the advisory group, has produced a pilot version of the digital tool, which is currently being field tested. Since May 2025, 42 testers have been recruited. Data analysis is pending. The digital tool will be publicly launched in 2026, readily available, free of charge, and for anyone to use. Results will be disseminated at scientific conferences, in peer-reviewed journals, and through popular science communication. Conclusions: The cocreative process outlined in this protocol has the potential to develop a digital tool for proactive EoL conversations that is broadly used in the public by varied end users. The digital tool can thus reach new groups in society, potentially highlighting death as a natural part of life and reinforcing normalization of EoL conversations.