JMIR Publications

ABSTRACT

Background:

Proactive end-of-life conversations can help individuals, their significant others, and healthcare professionals be better prepared to confront dying and future end-of-life decision-making. As talking about end-of-life issues may be unfamiliar and difficult, tools are increasingly used to support such conversations. While using digital tools can have many advantages over analog ones, 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 end-of-life conversations by co-creating and testing, together with potential community-based end-users, a digital version of an existing tool, the DöBra cards.

Objective:

This paper outlines the protocol for a funded participatory action research project co-creating a digital tool for proactive end-of-life conversations, as well as report on initial steps taken in the project.

Methods:

Project design is overall inspired by participatory action research and contains two work packages (WPs). WP A focuses on the iterative co-creation 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 pro-active conversations about future EoL values and preferences. Digital tool development is inspired by Elwyn et al.’s framework and will be conducted in collaborative groups. Data collection for both WPs includes repeated interviews with co-creation 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, descriptive and inferential analyses.

Results:

Ethical approval has been granted from the Swedish Ethical Review Authority. A step-wise recruitment strategy focusing on heterogeneity has yielded an Advisory Group with 16 members from 13 organizations, despite some drop-off for varying reasons. Community partners represent broad segments of society. The co-creation process together with the Advisory Group has produced a pilot version of the digital tool, which is currently being field tested. The digital tool is planned to be disseminated to the public in 2026; the ambition is for it to be readily available, free of charge and for anyone to use. Dissemination of research results will be conducted at international and national scientific conferences and by publishing peer-reviewed scientific articles, as well as popular-science communication in community organizations’ preferred fora.

Conclusions:

The co-creative process outlined in this protocol has potential to develop a digital tool for proactive end-of-life conversations that is broadly utilized 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 end-of-life conversations.