Participatory System Mapping of a Hospice Care System With Hospice Stakeholders: Hybrid Design Workshop Study.

Abstract

Background: Palliative and end-of-life care (PEoLC) systems are expanding across services, settings, and stakeholders, increasing their complexity and the need for systemic understanding to support patient outcomes and service delivery. Hospice care is central to the future of PEoLC, as hospices provide holistic services and engage diverse stakeholders. Participatory system mapping offers a way to collectively understand and visualize complex dynamics with those who live and work within these systems.

Objective: This study aims to capture hospice system dynamics and preliminary leverage points via participatory causal loop diagram (CLD) mapping while evaluating method suitability through 3 research questions: (RQ1) What key variables and causal interrelationships do stakeholders identify in a hospice through participatory system mapping workshops? (RQ2) What preliminary leverage points emerge from the system map? and (RQ3) How effective are participatory system mapping workshops for capturing hospice dynamics?

Methods: We developed and iteratively refined an innovative hybrid, asynchronous, multimodal design workshop series in a hospice in North West England. Stakeholders were introduced to core concepts in technology, design, systems thinking, and CLDs before engaging in participatory system mapping focused on the hospice experience quality. CLDs generated in workshops and through asynchronous participation were consolidated into a composite hospice system map. Twenty-seven participants, including patients, health care professionals, volunteers, managers, maintenance staff, and chaplaincy, contributed to the mapping process. The resulting map was analyzed using quantitative network analysis (in-degree, out-degree, betweenness, and closeness centrality) alongside qualitative interpretation of key system dynamics.

Results: The participatory hospice system map contained 84 variables connected by 175 causal links. Network analysis highlighted patient experience (highest in-degree, 20), advanced care planning (highest out-degree, 8), fundraising (highest betweenness centrality, 0.19), and relationships with community organizations and external stakeholders (highest closeness centrality, 0.23) as central elements in the map. Qualitative analysis illuminated important dynamics, including the impact of hospital admissions and hospice stereotypes, as well as uncertainties around how advanced care planning is shaped and enacted in practice.

Conclusions: Participatory system mapping with hospice stakeholders was feasible in a time-pressured setting and generated a nuanced, stakeholder-led representation of hospice system dynamics. The hybrid, multimodal workshop model enhanced access and flexibility, supporting diverse engagement. Network analysis of the CLD suggested preliminary structural and conceptual leverage points and revealed gaps in shared understanding, indicating candidate areas for service development, policy attention, and further research. Future work should examine the replicability of this approach across PEoLC settings and integrate context-specific processes to validate and act on candidate leverage points.