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.

Families affected by cancer need psychosocial support, however few family interventions have been scientifically evaluated. The Family Talk Intervention (FTI) was pilot tested in pediatric oncology with 26 families. Issues raised and addressed during FTI meetings were explored by analyzing hospital social workers’ (HSWs) fieldnotes. The findings show a range of severity in the family issues raised. These encompassed families’ wellbeing, communication, conflicts, strengths, and needs for further support. Findings indicate that FTI can be a structured, yet flexible, way for HSWs to identify and address the complex psychosocial needs of these families. 

Background: Most employees will experience serious illness, caregiving, dying and loss (End-of-Life (EoL) experiences) at multiple points throughout their working lives. These experiences impact affected employees but also their colleagues in terms of health and well-being, and the workplace as a whole in terms of workplace safety, productivity and labour relations. The impact of EoL experiences on employees means that workplaces are called to play a more active role in providing support for EoL experiences.

Aim: To describe how the EU-CoWork (2024–2028) project addresses its main aims to (1) createCompassionate Workplace cultures, practices and policies and improve health and well-being of employees dealing with EoL experiences in different national work contexts in Europe;(2) describe and evaluate the process of co-creation and implementation of CompassionateWorkplace Programs (CWPs) and how these influence the programs’ outcomes.

Design: EU-CoWork employs a facilitated and co-creative Developmental Evaluation approach to the development of 12 tailored CWPs across four European countries (Belgium, Austria,Sweden and Greece).

Methods: To evaluate the outcomes and processes leading to these outcomes, a mixed-methods Realist Evaluation methodology is applied, formulating and testing Context-Mechanism-Outcomes configurations and combining longitudinal quantitative and qualitative data collections.

Results: EU-CoWork will generate evidence to support an expanded model of occupational health and safety risk factors sensitive to the specific challenges related to employees’ Experiences. In doing so, several challenges will have to be navigated: involving employees with EoL experiences while avoiding overburdening them, avoiding tokenistic engagement, managing power differentials, balancing the need for scientific rigour with the flexibility required in co-creation, reconciling different epistemologies and disciplinary traditions and organisational resistance to change.

Conclusion: There are potential long-lasting broader societal impacts through the stimulation of open discourse on EoL topics, the reconciliation of work and care, and changes in gendered work and care patterns.

Background: Advance care planning (ACP) is a process involving conversations about values and preferences regarding future care at the end-of-life. ACP has led to positive outcomes, both in relation to quality of life and with increased use of palliative care, less life-sustaining treatment and fewer hospital admissions. Sweden has yet to embrace the practice systematically, but scattered initiatives exist.

Aim: To study implementation of a routine for ACP in NH settings in Sweden by exploring healthcare professionals’ experiences of engaging in ACP following this implementation.

Methods: The study followed a qualitative inductive design with convenience and snowball sampling. Semi-structured group and individual interviews with registered healthcare professionals were analysed using qualitative content analysis.

Findings: Organisational support for sustainable ACP implementation was found to be essential. This included sufficient training, facilitation, collaboration and uniform work routines across providers and professionals. Engaging in ACP conversations following the implemented routine was found to be a process of preparing, being, talking, deciding and sharing.

Conclusions: Successful implementation of ACP in NHs requires a carefully planned implementation strategy. ACP in NHs tend to be medically focused at the expense of residents’ psychosocial care-planning needs. Widespread uptake of ACP in Sweden could be useful in the national effort to adopt more person-centred care in Swedish healthcare.

KEY POINTS While advance care planning has been implemented in many other countries, Sweden lacks a national strategy on advance care planning and Swedish healthcare settings have yet to systematically implement this practice. • This study is the first to report on professionals’ experiences of engaging in sustainable advance care planning, following top-down implementation of the practice in one Swedish region. • Successful implementation of advance care planning in nursing homes requires a system-level approach, and shortcomings of the implementation process are highlighted.