Journal Review:The lived experience of facioscapulohumeral muscular dystrophy: A systematic review and synthesis of the qualitative literature
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Abstract
In this review we sought to characterize the lived experience of people living with FSHD (pwFSHD) to help clinicians to orient their services to the needs of these individuals.
Objectives: The objectives of this activity are to enable the reader to:
1)Understand and be able to apply in patient care and research the biopsychosocial model of quality of life in people with facioscapulohumeral muscular dystrophy and other muscle disorders;
2)Incorporate an understanding of the 5 descriptive themes when caring for individuals with facioscapulohumeral muscular dystrophy; 3)Understand and be able to incorporate into patient care the two analytical themes:
a)the emotional challenging of continuing and intensifying adaptation, and
b) the relational burden of rare diseases.
ACCREDITATION STATEMENT The AANEM is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.
CREDIT DESIGNATION The AANEM is accredited by the American Council for Continuing Medical Education (ACCME) to providing continuing education for physicians. AANEM designates this Journal-based CME activity for a maximum of 1.0
AMA PRA Category 1 Credit™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Credit expires 12/7/2026.
DISCLOSURE INFORMATIONThe authors had no financial conflicts of interest.
FORMATPDF
Roisin Murray DClinPsychol; Clare M. Donnelly DClinPsychol; Kent D. Drescher PhD; Christopher D. Graham PhD, DClinPsychol