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

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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.

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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.

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Authors and Affiliations

  1. The National Rehabilitation Centre for Neuromuscular Diseases, Kongsvang Allé 23, 8000, Aarhus C, Denmark

    Jørgen Jeppesen, Jes Rahbek & Ole Gredal

  2. Institute of Public Health, University of Southern Denmark, J.B. Winsløws Vej 9 B, 1, 5000, Odense C, Denmark

    Helle Ploug Hansen

Authors
  1. Jørgen Jeppesen
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  2. Jes Rahbek
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  3. Ole Gredal
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  4. Helle Ploug Hansen
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Corresponding author

Correspondence to Jørgen Jeppesen.

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Jeppesen, J., Rahbek, J., Gredal, O. et al. How Narrative Journalistic Stories Can Communicate the Individual’s Challenges of Daily Living with Amyotrophic Lateral Sclerosis. Patient 8, 41–49 (2015). https://doi.org/10.1007/s40271-014-0088-6

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