[Pubmed] Exploring psychosocial experiences in clinically stable generalised Myasthenia Gravis: A thematic analysis

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J Neuromuscul Dis. 2025 Dec 24:22143602251406948. doi: 10.1177/22143602251406948. Online ahead of print.

ABSTRACT

Myasthenia Gravis (MG) is a chronic autoimmune neuromuscular condition that significantly impacts patients' lives. Whilst psychosocial challenges are increasingly recognised as important in understanding the lived experience of patients, insight into these experiences during periods of clinical stability remains underexplored. This qualitative study explores the psychological and social aspects of living with MG through thematic analysis of semi-structured interviews with eight adults from a specialist MG care clinic in London, all considered clinically stable for at least three months. Data were derived from participants initially interviewed about their day-to-day experience of physical symptoms to inform development of a symptom monitoring tool. As psychosocial themes emerged strongly but remained unanalysed, this paper presents a secondary analysis focusing on psychosocial themes. Three overarching themes emerged: (1) coping with adaptation - including the burden of planning, struggles to accept diagnosis, therapeutic challenges and fear of the future; (2) social and identity disruption - involving changes in self-image, social withdrawal, and occupational challenges; and (3) emotional and psychological impact - highlighting negative emotions and cognitive fatigue. Uncertainty emerged as a meta-theme underpinning all other themes, reflecting, driving, and being created by MG's fluctuating symptoms. Findings suggest that psychological and social challenges underscored by uncertainty persist independently of symptom stability, highlighting the importance of uncertainty-focused interventions and integrated psychosocial support in MG care.

PMID:41442252 | DOI:10.1177/22143602251406948


Source: https://pubmed.ncbi.nlm.nih.gov/4144225 ... 22+67771e2