JMIR Publications

ABSTRACT

Background:

Palliative and End-of-Life Care (PEoLC) systems are expanding in a multitude of dimensions and becoming increasingly complex. Understanding these systems is crucial for improving patient outcomes and service delivery in the face of changing demographics and shifting demands and resources. Hospice care is key to the future of PEoLC as hospices currently represent multifaceted service provision and engage with diverse stakeholders of PEoLC. This study aimed to understand the hospice care system using participatory system mapping with representative stakeholders of the system.

Objective:

1- To capture the system variables and their causal interrelationships in a hospice in Northwest England as defined by stakeholders through participatory design workshops. 2- To identify leverage points within the system map of hospice care from the perspective of a hospice in Northwest England. 3- To explore the suitability of participatory system mapping with stakeholders as a method for capturing complex system dynamics in hospice care setting.

Methods:

Aimed at engaging stakeholders of a North West UK hospice in a participatory system mapping method, an innovative hybrid, asynchronous multi-modal design workshop series was iteratively developed. Causal Loop Diagrams (CLDs) generated by stakeholders were used to create a composite representative participatory map of the hospice care system. 27 participants representing various hospice stakeholder groups spanning patients, healthcare professionals, volunteers, management, maintenance and chaplaincy, participated in the workshops. The resulting system map was analysed using quantitative Network Analysis and qualitative interpretation.

Results:

The participatory hospice system map contained 84 variables with 175 connections. Network Analysis revealed key variables such as Patient Experience (highest in-degree, 20), Advanced Care Planning (highest out-degree, 8), Fundraising (highest betweenness centrality, 0.19), and Relationships with Community Organisations and External Stakeholders (highest closeness centrality, 0.23). Qualitative analysis identified important system dynamics including the impact of hospital admissions and hospice stereotypes, and the unknown influencers of advanced care planning.

Conclusions:

This study contributes to participatory system mapping in healthcare, offering both empirical insights and methodological implications for engaging with and improving complex PEoLC systems through diverse stakeholder inclusion, and integration of quantitative and qualitative analyses. The study demonstrates the potential of participatory system mapping with hospice stakeholders as an accessible and informative method for discovering complex dynamics in hospice care systems. The study introduces an iteratively refined asynchronous, multi-modal hybrid design workshop approach with an emphasis on enhanced access, flexible engagement, and diverse interaction. Empirically, this study identifies both structural and conceptual leverage points for hospice system through participatory stakeholder-created causal loop diagram, which could have a wide impact on developing services. The study also reveals gaps in understanding from a systemic perspective and from implicit understanding of a topic by participants, such as advanced care planning and hospital admissions. These insights present actionable areas for policy and practice improvements, demonstrating the method's capacity to inform high-level system changes while remaining grounded in stakeholder realities. Future research should explore the replicability of this approach across diverse healthcare settings and its potential for creating stakeholder-informed system improvements in broader PEoLC contexts.