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Article dans une revue

The Subjective Experience of Patients Diagnosed with Hereditary Hemorrhagic Telangiectasia: a Qualitative Study

Abstract : The aim of the present study was to understand the context and psychological impact for patients diagnosed with hereditary hemorrhagic telangiectasia (HHT). Semi-structured interviews were conducted with 9 patients affected by HHT, and the transcripts were analyzed using interpretative phenomenological analysis. The results of this study allowed us to propose a new hypothesis to explain the delay in diagnosis: the trivialization of symptoms associated with HHT. Moreover, the results showed that a genetic diagnosis of HHT results in emotional shock, uncertainty about the future, and worry about one's children in parents who are confronted with the dilemma of facing the reality of the diagnosis or delaying dealing with the diagnosis until disease onset. Family and personal perceptions of the disease influenced not only the delay in diagnosis but also the emotional and behavioral reactions of patients following a genetic diagnosis.
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https://hal.univ-lille.fr/hal-02542108
Contributeur : Lilloa Université de Lille <>
Soumis le : mardi 14 avril 2020 - 14:30:08
Dernière modification le : jeudi 4 juin 2020 - 10:24:09

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Laura Geerts, Carole Fantini-Hauwel, Elodie Brugallé, Odile Boute, Frédéric Frénois, et al.. The Subjective Experience of Patients Diagnosed with Hereditary Hemorrhagic Telangiectasia: a Qualitative Study. Journal of Genetic Counseling, 2016, Journal of Genetic Counseling, 26 (3), pp.612-619. ⟨10.1007/s10897-016-0033-z⟩. ⟨hal-02542108⟩

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