title: How Narrative Journalistic Stories Can Communicate the Individual's Challenges of Daily Living with Amyotrophic Lateral Sclerosis.
abstract: 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 professionals' 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.
authors.affiliation: The National Rehabilitation Centre for Neuromuscular Diseases, Kongsvang Allé 23, 8000, Aarhus C, Denmark, joje@rcfm.dk.
authors.forename: Jørgen
authors.initials: J
authors.lastname: Jeppesen
authors.forename: Jes
authors.initials: J
authors.lastname: Rahbek
authors.forename: Ole
authors.initials: O
authors.lastname: Gredal
authors.forename: Helle Ploug
authors.initials: HP
authors.lastname: Hansen
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000690:Amyotrophic Lateral Sclerosis / Q000503:physiopathology / Q000523:psychology*; D003142:Communication; D005260:Female; D006801:Humans; D018156:Journalism, Medical; D008297:Male; D008875:Middle Aged; D033262:Narration