Live Experiences in People with Myasthenia Gravis: A Qualitative Study

Abstract

Introduction Myasthenia gravis (MG) is an autoimmune disorder characterized by severe muscle weakness, which can lead to acute respiratory failure. The unpredictable symptoms of MG affect both physical and mental health, affecting daily activities, work, and social interactions. This can result in negative self-perception, ultimately diminishing patients’ quality of life. A comprehensive understanding of the condition is crucial for improving patient care. 

Objective To explore the live experiences of people with MG regarding their perception of the disease, lifestyle changes, self-management, and perception of the remaining life 

Design A descriptive qualitative design 

Methods The informants included 15 people aged 18 and older who had been diagnosed with MG and had received treatment for at least six months at a super-tertiary hospital in Bangkok. Purposive sampling was used according to the inclusion criteria. In-depth interviews were conducted using semi-structured interview guides that focused on their experiences, perceptions of the disease, lifestyle changes, self-management, and perceptions of the remaining life. Data were analyzed using content analysis based on Colaizzi’s framework. The trustworthiness of the research was assessed through credibility, confirmability, and transferability.

Findings The informants, aged 27 to 85, had been diagnosed with MG for periods ranging from 1 to 40 years. Most were treated with medication, while some also received intravenous immunoglobulin. Findings were categorized into three main themes: 1) Life Will Never Be the Same, including living with uncertainty, living with limitations, and enduring suffering; 2) Self-Management, including strict adherence to medication and appointments, awareness and self-monitoring, avoidance of risk behaviors, keeping physical fitness, and acceptance of living with the illness; and 3) Perception of Remaining Life, including expecting to live still, expecting for treatment outcomes, expecting nothing, and expecting for support from others.

Recommendation Findings from this study highlight how people with MG navigate life and manage their chronic conditions. Healthcare teams can use this information to develop tailored care plans. Additionally, future research can use this information to develop strategies to improve patient care and their quality of life.