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Sophie Arborio

    Sante Publique (Vandoeuvre-Les-Nancy, France)
    |June 20, 2022
    PubMed
    Summary
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    Patients

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    Area of Science:

    • Anthropology of Health
    • Medical Sociology

    Background:

    • Severe epilepsies and perinatal conditions present significant diagnostic, therapeutic, and social uncertainties.
    • Understanding patient narratives is crucial for identity reconstruction and adaptation to chronic illness.

    Purpose of the Study:

    • To explore the role of storytelling and "self-statements" in managing uncertainty for individuals with severe epilepsies.
    • To inform the development of adapted therapeutic patient education (TPE) systems.

    Main Methods:

    • Qualitative ethnographic research, including participant observation and semi-structured interviews.
    • Multidisciplinary literature review synthesizing findings from four anthropological studies.

    Main Results:

    • "Self-statements" or patient narratives aid in identity reconstruction amidst illness.
    • Storytelling helps individuals adapt to the inherent uncertainties of rare diseases and handicaps.

    Conclusions:

    • Narration is vital for rebuilding identity disrupted by rare diseases.
    • Therapeutic patient education (TPE) programs should support patient "self-explanations" for effective self-management.