1 Research Unit of General Practice, Department of Public Health, Det Sundhedsvidenskabelige Fakultet, SDU2 RehabiliteringsCenter for Muskelsvind, The National Rehabilitation Centre for Neuromuscular Diseases3 RehabiliteringsCenter for Muskelsvind4 Research Unit of General Practice, Department of Public Health, Det Sundhedsvidenskabelige Fakultet, SDU
Background: To complement the clinical and therapeutic knowledge about the symptoms, prognosis, and social implications of amyotrophic lateral sclerosis (ALS), health research and care need to develop methods that capture and communicate the unique individual impact on daily living with the disease. Objective: To explore how narrative journalistic stories can communicate experiences of daily living with ALS and compensate the progressive loss of the ability to speak. Methods: Twenty-four interviews at home with six people diagnosed with ALS were transformed into narrative journalistic stories. A formal readership was selected by the participant among his or her most significant health professionals.Topics of stories were categorized and selected themes analysed and interpreted. Results: The stories communicated daily living with ALS as a continuous process of creating a new normality of everyday life. The stories also revealed conflicting views between patient and professionals regarding information about disease and prognosis. The approach used provided an understanding of the individual healthcare engagement with the patient. Conclusions: The narrative journalistic story enhances communication about daily living with ALS by offering a mode of sharing experiences that compensate the progressive loss of communicative abilities. The story sustains meaning for patients living with ALS, and supports them in appreciating a day-to-day life where they are not just waiting for death. Narrative journalistic storytelling may educate health professionals to more effectively comprehend that a medical prognosis should be complemented by understanding the individual’s unique experience of vulnerability. In particular, this applies to severe rare diseases where insight is difficult to obtain.