Qualitative study on the illness experience and feeings of generalized myasthenia gravis patients during first relapse
NIE Beibei
MA Lixia
CAI Libai
WANG Jingjie
LIU Zhenya
Abstract：Objective To explore the illness experience and feelings of patients with the first recurrence of generalized myasthenia gravis(GMG).Methods A phenomenological research method was adopted.From December 2023 to March 2024,16 patients with first-relapse GMG in the neurointensive care unit of the First Affiliated Hospital of Zhengzhou University were selected through purposive sampling for semi-structured in-depth interviews.The Colaizzi seven-step method was used to analyze the data and extract the themes.Results A total of 3 themes and 7 sub-themes were extracted:obvious self-depletion(negative thinking patterns and burnout of health-promoting behaviors),difficulty in identifying recurrent symptoms(concealed symptoms and excessive focus on physical symptoms),and unmet needs for continuing care(difficulty in obtaining disease information,lack of exercise guidance and incomplete drug supply guarantee).Conclusion The experiences and feelings of patients with the first recurrence of GMG include significant self-depletion,difficulty in identifying recurrence symptoms,and unmet needs for continuing care.It is recommended to provide targeted intervention measures and psychological support,to enhance the patients' ability to monitor their symptoms,give exercise guidance and drug guarantee,thereby reducing the risk of disease recurrence.
Keywords：Generalized myasthenia gravisRecurrenceExperienceFeelingQualitative research
Publication Date：2025-09-20
Online Publishing Date：2025-10-30(First online date of this platform, not the publication date of the document)
Pages：5( 9560-9564 )