Picturing the Experience of Living With Myotonic Dystrophy (DM1): A Qualitative Exploration Using Photovoice.

Abstract

Myotonic dystrophy presents with multisystemic complications, and there is a well-recognized myotonic dystrophy personality profile that is characterized by executive dysfunction, an avoidant personality, and impaired cognition. Understanding symptom impact on patients' lives is crucial for providing appropriate patient-centered care; however, much of the myotonic dystrophy literature reflects the biomedical model, and there is a paucity of articles exploring patient experience. The aim of this study was to use a novel research approach to explore the experiences of patients with myotonic dystrophy. Nine individuals participated in a qualitative study using the photovoice method. Photovoice uses the visual image to document participants' lives, and participants took pictures pertaining to living with myotonic dystrophy that stimulated individual and focus group interviews. We used content analysis to analyze the data; in turn, codes were collapsed into themes and categories. Findings were presented to participants to ensure resonance. Participants took 0-40 photographs that depicted barriers and facilitators to living successfully with myotonic dystrophy. We identified two categories that include participants' challenges with everyday activities, their worries about the future, their grief for lost function and social opportunities, and their resilience and coping strategies. Participants also described their experiences using the photovoice method. Photovoice is a useful approach for conducting research in myotonic dystrophy. Participants were active research collaborators despite perceptions that individuals affected with myotonic dystrophy are apathetic. Our findings suggest that participants are concerned about symptom impact on reduced quality of life, not symptoms that clinicians preferentially monitor. Nurses, therefore, are essential for providing patient-centered, holistic care for patients' complex biopsychosocial needs. Research exploring current physician-led clinical care models is warranted.