Understanding Barriers to Participate in Specialized Neuromuscular Rehabilitation Experienced by People With Neuromuscular Diseases

Rationale There are many types of neuromuscular diseases characterized by considerable variation in disease progression and functional abilities depending on the specific diagnosis, leading to an increased need for specialized rehabilitation across the lifespan. Objective The objective of this study was to identify barriers to participate in specialized neuromuscular rehabilitation experienced by people with neuromuscular diseases to guide future targeted rehabilitation. Method The design for this study was a qualitative interview study using the interpretive description methodology and Erving Goffman's frontstage—backstage theory founded in the theory symbolic interactionism as the theoretical lens. The present study adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. The setting for this study was the Danish National Rehabilitation Center for Neuromuscular Diseases. Twenty‐two persons with various types of neuromuscular diseases participated in interviews conducted online or by phone. Results We found that people with neuromuscular diseases experience various barriers to participating in specialized rehabilitation. The barriers were represented by an everyday flux between seeking normalcy by opting out rehabilitation or acknowledging the need for rehabilitation. Conclusions The participants opted out of rehabilitation partly out of fear of losing hope and control which they felt could be invoked by rehabilitation and partly because they were striving for normality. When planning future rehabilitation services, it is important to provide rehabilitation services in a safe environment for the participants where they can share thoughts and worries without feeling abnormal or fearing a loss of control.