Health Information Needs of Patients Living with Myasthenia Gravis: A Narrative Inquiry

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.

Name thesis:degree_name

Master of Nursing (M.N.)

Level thesis:degree_level

Masters

Discipline thesis:degree_discipline

Nursing

Grantor

University of Saskatchewan

Year dc:date.issued

2024

Author dc:creator

• Fox, April

Advisor dc:contributor.advisor

• Rohatinsky, Noelle

Committee members dc:contributor.committeemember

• de Padua, Anthony
• Bigalky, Jodie

• Myasthenia gravis, rare diseases, health information, information-seeking

Language dc:language.iso

en

Handle dc:identifier.uri

https://hdl.handle.net/10388/15573

OAI identifier oai:identifier

oai:harvest.usask.ca:10388/15573