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How Narrative Journalistic Stories Can Communicate the Individual’s Challenges of Daily Living with Amyotrophic Lateral Sclerosis

  • Jørgen Jeppesen
  • Jes Rahbek
  • Ole Gredal
  • Helle Ploug Hansen
Original Research Article

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.

Keywords

Health Professional Amyotrophic Lateral Sclerosis Amyotrophic Lateral Sclerosis Patient Verbatim Transcript Interview Conversation 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Notes

Funding

This study was funded by the Danish Ministry of Science, Innovation and Higher Education (grant reference number 09-053456), the national Rehabilitation Centre for Neuromuscular Diseases (RehabiliteringsCenter for Muskelsvind), and the Neuromuscular Patient Association (Muskelsvindfonden).

Author Contributions

Jørgen Jeppesen: conception and design, interviews and writing of stories, analysis and interpretation of data, drafting the article; Jes Rahbek: conception and design; Ole Gredal: design and acquisition of data; Helle Ploug Hansen: analysis and interpretation of data, revision and editing the manuscript. All authors critically reviewed and approved the final manuscript. Jørgen Jeppesen is the guarantor for the content of the manuscript.

Conflict of interest

Jørgen Jeppesen, Jes Rahbek, Ole Gredal and Helle Ploug Hansen declare no conflicts of interest.

Supplementary material

40271_2014_88_MOESM1_ESM.doc (27 kb)
Supplementary material 1 (DOC 27 kb)

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Copyright information

© Springer International Publishing Switzerland 2014

Authors and Affiliations

  • Jørgen Jeppesen
    • 1
  • Jes Rahbek
    • 1
  • Ole Gredal
    • 1
  • Helle Ploug Hansen
    • 2
  1. 1.The National Rehabilitation Centre for Neuromuscular DiseasesAarhus CDenmark
  2. 2.Institute of Public HealthUniversity of Southern DenmarkOdense CDenmark

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