The DöBra cards 2.0: Investigating promotion of early, proactive end-of-life conversations through co-creation and testing of a digital conversation tool

Research problem and specific questionsDying and death affect us all, but proactive reflection and discussion about future end-of-life (EoL) care, known as advance care planning (ACP), is largely lacking in Sweden.

ACP has been shown to increase quality of life, healthcare satisfaction, and use of palliative care, without causing stress or anxiety for target persons (TPs) or their significant others (SOs).

The aim of this project is to further develop and investigate the promotion of early, proactive EoL conversations by, in collaboration with potential community-based end-users, co-creating and testing a digital version of an existing ACP conversation tool, the DöBra cards.Data and methodOverall design is based on participatory action research (PAR), i.e. research with rather than on people.

Work package (WP) A explores the process of co-developing the digital tool with community partners representing potential end-users and a multidisciplinary team of researchers, as well as adaptations needed to make the tool relevant for a broad Swedish public.

Data include meeting documentation, interviews with group members involved in co-creation, think aloud exercises with heterogenous samples in sandpit and usability testing, event log data, and a usability scale. In WP B, we field-test the tool with ~50 TPs and ~30 of their SOs in an 8-week trial period.

Studies focus on if and how the digital tool can support TPs and SOs reflecting and talking about future EoL issues, and increase preparedness and agreement amongst TPs and SOs for future EoL decision-making.

Data will consist of interviews with TPs and SOs before and after the trial period, event log data from the trial period, and EoL preference rankings in the digital tool.Societal relevance and utilizationThis project aligns with present preventive and public health initiatives, in collaborating with relevant societal partners in promoting and supporting, through development of a digital tool, individuals and their SOs to be active discussion partners in future EoL care.Plan for project realizationThis PAR process includes digital tool co-creation in an iterative process including different stages of development and testing with repeated feedback from potential community end-users, thus continually feeding data into both the research and development processes.

Costs include staff, tool development costs, expenses for group meetings, data collection, and travel.