Embodied wisdom: towards acceptable and helpful explanations for functional somatic symptoms

Area of Science:

• Medical Sociology
• Psychiatry
• Health Psychology

Background:

• Persistent symptoms often lack adequate explanatory frameworks, leading to disadvantages.
• This lack constitutes hermeneutic injustice, impacting patient understanding and care.
• Multisystem functional somatic symptoms (FSS) represent a complex area with diverse patient and professional perspectives.

Purpose of the Study:

• To develop therapeutically relevant and broadly acceptable explanations for FSS.
• To bridge the epistemic gap between patients and healthcare professionals.
• To create a co-designed symptom explanation framework through participatory methods.

Main Methods:

• A participatory design project involving knowledge partners: patients with FSS, healthcare professionals, researchers, translators, and designers.
• Iterative dialogue and co-creation to develop explanations.
• Consideration of ontological, scientific, and clinical coherence, agency, temporality, narrative, internet influence, and personalization.

Main Results:

• A resulting framework with 28 broadly relevant, acceptable, and usable explanations for FSS.
• Explanations integrated perspectives from patients, healthcare professionals, and researchers across Europe.
• The framework is available open-access at www.bodysymptoms.org, including actionable health advice.

Conclusions:

• Co-designed explanations can provide a shared framework for understanding complex symptoms like FSS.
• The developed framework addresses hermeneutic injustice by empowering patients with accessible, multi-perspective explanations.
• This approach offers a model for collaborative knowledge creation in contested healthcare areas.