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Sophie Arborio, Emmanuelle Simon

    Sante Publique (Vandoeuvre-Les-Nancy, France)
    |June 20, 2022
    PubMed
    Summary
    This summary is machine-generated.

    Therapeutic Patient Education (TPE) can integrate narrative approaches to enhance patient knowledge and skills. This study explores how storytelling in TPE fosters a more relational and patient-centered care model for rare diseases.

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    Area of Science:

    • Health Sciences
    • Social Sciences
    • Patient Education

    Background:

    • The West Syndrome research program (Fam-West) explored patient experiences and therapeutic education for rare diseases.
    • Traditional Therapeutic Patient Education (TPE) communication is often informational, with knowledge transfer from caregiver to patient.
    • An alternative TPE approach recognizes experiential knowledge gained by patients through their illness.

    Purpose of the Study:

    • To investigate the integration of narrative approaches within Therapeutic Patient Education (TPE).
    • To examine how healthcare professionals utilize narrative in various care contexts.
    • To explore new perspectives on the TPE relationship between caregivers, patients, and their support systems.

    Main Methods:

    • The study consolidates proposals from the Fam-West research program conference.

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  • It analyzes the inclusion of narrative elements within TPE.
  • It draws upon interdisciplinary approaches, including human and social sciences, engineering, and expert practitioners.

    • Main Results:

    • Narrative can be integrated into TPE to enrich the care relationship.
    • Healthcare actors are exploring narrative in diverse settings.
    • This integration opens new questions about TPE dynamics.

    Conclusions:

    • Storytelling can be a valuable component of TPE, fostering a "relational TPE".
    • Interdisciplinary collaboration is key to developing this approach.
    • The study documents both the potential and limitations of narrative in TPE for rare diseases.