Health Information Needs of Patients Living with Myasthenia Gravis: A Narrative Inquiry
Date
2024-04-10
Authors
Journal Title
Journal ISSN
Volume Title
Publisher
ORCID
Type
Thesis
Degree Level
Masters
Abstract
Myasthenia gravis (MG) is a rare autoimmune disease that affects the neuromuscular junction of voluntary muscles, resulting in muscular dystrophy. The disease is termed the snowflake disease due to the variability of symptoms, disease progression, and effective treatments for each person. As the implications of the disease are mostly invisible, many individuals living with MG feels misunderstood and marginalized.
The purpose of this study was to explore the stories of individuals living with MG. The aim was to understand the information-seeking practices from the onset and duration of their disease. Research and available studies of information-seeking in patients living with rare diseases are limited, but there is a complete absence of studies exploring the health-information needs of patients living with MG.
Narrative inquiry was the methodology for this study to give people living with MG a voice in a system in which they feel misunderstood, isolated, and powerless. Four participants shared their stories in semi-structured conversations. The analysis revealed four resonant threads throughout the participant stories: reasons for seeking information, sources of information, changes in information seeking over time, and satisfaction with information. From the analysis and interpretation, recommendations have been made for healthcare provider practice, education, and future research.
Description
Keywords
Myasthenia gravis, rare diseases, health information, information-seeking
Citation
Degree
Master of Nursing (M.N.)
Department
Nursing
Program
Nursing