Picturing the Experience of Living with Myotonic Dystrophy (DM1)

Picturing the Experience of Living with Myotonic Dystrophy (DM1)
Kori A. LaDonna and Shannon L. Venance
J Neurosci Nurs.2015 Oct;47(5):285-95

Myotonic dystrophy presents with multisystemic complications, and while the literature reflects the biomedical model, little has been done to explore the patient experience. A new study that was recently published utilizes the photovoice method to document the lives of nine participants with mild-to-moderate adult-onset myotonic dystrophy. Photovoice uses visual images taken by the participants to document their lives. These pictures were then used to stimulate discussions in individual and focus group interviews. Results highlighted the barriers and facilitators to living successfully with myotonic dystrophy. Of the most importance are the findings that suggest that participants are concerned about symptom impact on reduced quality of life and not symptoms that clinicians preferentially monitor. This study may provide insight on the patients’ values and experiences in order to drive more patient-centered clinical care.

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