ABSTRACT
Background
Long Covid disproportionately affects African American communities, exacerbating pre-existing health disparities and systemic barriers to care. Conventional public health interventions often fail to address the complex systemic issues at play due to a lack of grounding in community-certified knowledge about the broader societal context that produces the disparities and in which the interventions must operate. New methods are needed to elicit community perspectives on living with long Covid.
Methods
This study employed Community-Based System Dynamics (CBSD) workshops, conducted in hybrid formats (online and in-person), to engage African American communities impacted by long Covid. Participants included affected individuals, healthcare professionals and systems researchers.
Results
The workshops yielded system dynamics causal loop diagrams that illustrate the multifaceted societal context and impact of long Covid. Community-driven insights led to the identification of targeted interventions and informed a comprehensive action plan designed to address specific health system barriers and enhance community resilience.
Conclusions
CBSD workshops proved effective in fostering significant community engagement and empowerment, presenting a replicable model for gaining a deeper understanding of the socio-cultural context that underlies complex health disparities. These findings suggest that incorporating community-sourced societal context knowledge and system dynamics modelling and analysis can substantially enhance public health strategies for managing long Covid.
Patient or Public Contribution
People with lived experience of long Covid were actively involved throughout all phases of this study. Participants contributed to the design and facilitation of Community-Based System Dynamics (CBSD) workshops, helped construct and refine causal loop diagrams based on their experiences, and generated action ideas for future interventions. Their insights shaped both the structure and content of the system models and directly informed the interpretation of results. Several participants also reviewed and provided feedback on early drafts of the manuscript to ensure the findings reflected their perspectives and priorities.