People with neuromuscular diseases and their relatives' perspectives on challenges in everyday life and healthcare

Objective: People with a neuromuscular disease (NMD) often experience challenges in everyday life and healthcare. Aim: To investigate experiences of and perspectives on challenges in everyday life and healthcare of people with NMDs and their relatives to gain new insights into how life-long rehabilitation can be tailored. Patients & methods: The design was qualitative using the interpretive description methodology and the Sense of Coherence theory. An ethnographic fieldwork was conducted where 45 persons with NMD and their relatives were included for interviews and participant observations. Results & conclusion: People with NMDs continually adapt to a changing functioning and balance their need for knowledge with their dependency on help when navigating the healthcare system. Structured, professionally facilitated peer support is needed. What is this article about? The term neuromuscular disease (NMD) covers a range of diagnosis that affect the nervous system and result in muscle weakness and wasting, respiratory challenges, and other symptoms. The symptoms from the disease depend on the specific NMD diagnosis and can vary from mild to severe symptoms. The diseases can have a relatively stable course or rapid advancement as in amyotrophic lateral sclerosis (ALS), which has an average survival time of 3 years. Therefore, the aim of the study was to investigate experiences of and perspectives on challenges in everyday life and healthcare of people with NMDs and their relatives to gain new insights into how life-long rehabilitation can be tailored. What were the results? We found that people with NMDs must constantly adapt and adjust to changes in functioning, balancing information and knowledge needs with dependency when navigating the healthcare system. What do the results of the study mean? Health professionals should acknowledge the expertise of the individual person with a NMD and their relatives and collaborate with them on setting shared goals for the rehabilitation process. Moreover, structured, professionally facilitated peer support is needed that includes counseling and support when sharing worries and concerns about an unpredictable future. Finally, help and support should be offered regarding navigating the social and healthcare systems. This study investigated experiences of everyday life challenges and rehabilitation needs of people with neuromuscular diseases and their relatives. The results demonstrated that life with a NMD was a continuum of adaptability due to the disease and changing functioning.