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



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.


To explore how narrative journalistic stories can communicate experiences of daily living with ALS and compensate the progressive loss of the ability to speak.


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.


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.


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.


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.



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)


  1. 1.
    National Institutes of Neurological Disorders and Stroke. Amyotrophic lateral sclerosis (ALS) fact sheet. Publication date June 2013. NIH Publication No. 13-916. Accessed 15 Apr 2014.
  2. 2.
    Bolmsjö I. Existential issues in palliative care: interviews of patients with amyotrophic lateral sclerosis. J Palliat Med. 2001;4:499–505.PubMedCrossRefGoogle Scholar
  3. 3.
    Boston P, Towers A, Barnard D. Embracing vulnerability: risk and empathy in palliative care. J Palliat Care. 2001;17:248–53.PubMedGoogle Scholar
  4. 4.
    Bolmsjö I, Hermerén G. Conflicts of interest: experiences of close relatives of patients suffering from amyotrophic lateral sclerosis. Nurs Ethics. 2003;10:186–98.PubMedCrossRefGoogle Scholar
  5. 5.
    Hecht M, Hillemacher T, Grasel E, et al. Subjective experience and coping in ALS. Amyotroph Lateral Scler. 2002;3:225–31.Google Scholar
  6. 6.
    Kaufert J, Koch T. Disability or end-of-life? Competing narratives in bioethics. Theor Med Bioeth. 2003;24:459–69.PubMedCrossRefGoogle Scholar
  7. 7.
    Ball LJ, Beukelman DR, Pattee GL. Communication effectiveness of individuals with amyotrophic lateral sclerosis. J Commun Disord. 2004;37:197–215.PubMedCrossRefGoogle Scholar
  8. 8.
    Murphy J. Communication strategies of people with ALS and their partners. Amyotroph Lateral Scler. 2004;5:121–6.CrossRefGoogle Scholar
  9. 9.
    Brown J, Addington-Hall J. How people with amyotrophic lateral sclerosis talk about living with their illness: a narrative study. J Adv Nurs. 2008;62:200–8.PubMedCrossRefGoogle Scholar
  10. 10.
    Fanos JH, Gelinas DF, Foster RS, et al. Hope in palliative care: from narcissism to self-transcendence. J Palliat Med. 2008;11:470–5.PubMedCrossRefGoogle Scholar
  11. 11.
    Brown J. User, carer and professional experiences of care in amyotrophic lateral sclerosis. Prim Health Care Res Dev. 2003;4:207–17.CrossRefGoogle Scholar
  12. 12.
    King SJ, Duke MM, O’Connor BA. Living with amyotrophic lateral sclerosis/amyotrophic lateral sclerosis (ALS/ALS): decision-making about ‘ongoing change and adaptation’. J Clin Nurs. 2009;18:745–54.PubMedCrossRefGoogle Scholar
  13. 13.
    Locock L, Ziebland S, Dumelow C. Biographical disruption, abruption and repair in the context of amyotrophic lateral sclerosis. Sociol Health Ill. 2009;31:1043–58.CrossRefGoogle Scholar
  14. 14.
    Oliver D, Borasio GD, Walsh D. Palliative care in amytrophic lateral sclerosis. 2nd ed. Oxford: Oxford University Press; 2006.CrossRefGoogle Scholar
  15. 15.
    Ng L, Khan F. Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database Syst Rev. 2009;(4):CD007425.Google Scholar
  16. 16.
    Sakellariou D, Boniface G, Brown P. Experiences of living with amyotrophic lateral sclerosis: a review of qualitative research. Disabil Rehabil. 2013;35:1765–73.PubMedCrossRefGoogle Scholar
  17. 17.
    Whitehead B, O’Brien MR, Jack BA, Mitchell D. Experiences of dying, death and bereavement in amyotrophic lateral sclerosis: a qualitative study. Palliat Med. 2012;26:368–78.PubMedCrossRefGoogle Scholar
  18. 18.
    Bingley AF, Thomas C, Brown J, et al. Developing narrative research in supportive and palliative care: the focus on illness narratives. Palliat Med. 2008;22:653–8.PubMedCrossRefGoogle Scholar
  19. 19.
    Ragan SL, Wittenberg-Lyles EM, Goldsmith J, Sanchez-Reilly S. Communication as comfort: multiple voices in palliative care. New York: Routledge; 2008: p. 2–25.Google Scholar
  20. 20. Motor neurone disease. Accessed 15 Apr 2014.
  21. 21. The research. Accessed 15 Apr 2014.
  22. 22.
    Kelly SE. Qualitative interviewing techniques and styles. In: Bourgeault I, Dingwall R, de Vries R, editors. The SAGE handbook of qualitative methods in health research. London: SAGE Publications; 2010.Google Scholar
  23. 23.
    Frank AW. The wounded storyteller: body, illness, and ethics. Chicago: The University of Chicago Press; 1995.CrossRefGoogle Scholar
  24. 24.
    Frank AW. Letting stories breathe: a socio-narratology. Chicago: The University of Chicago Press; 2010.CrossRefGoogle Scholar
  25. 25.
    Radley A. Works of illness. Narrative, picturing and the social response to serious disease. Ashby-de-la-Zouch: InkerMen Press; 2009.Google Scholar
  26. 26.
    Charon R. Bridging health care’s divides. What is narrative medicine? In: Narrative medicine. Honoring the stories of illness. New York: Oxford University Press; 2006.Google Scholar
  27. 27.
    Hydén L, Brockmeier J. From the retold to the performed story. In: Health, illness and culture: broken narratives. New York: Routledge; 2008.Google Scholar
  28. 28.
    Jeppesen J, Hansen HP. Narrative journalism as complementary inquiry. Qual Stud. 2011;2:98–117.Google Scholar
  29. 29.
    Jeppesen J, Gredal O, Rahbek J, Hansen HP. Journalistic narrative can complement health professional understanding in rehabilitation [in Danish]. Ugeskr Laeger. 2012;174:2079–81.PubMedGoogle Scholar
  30. 30.
    Jeppesen J. Rehabilitation with stories: a socio-narratological study of journalistic storytelling as a method to understand the patient as fellow human being. PhD thesis [in Danish], ISBN 978-87-90367-3. Odense: Print & Sign, University of Southern Denmark; 2013.Google Scholar
  31. 31.
    Kramer M, Call W. Telling true stories: a nonfiction writers’ guide from the Nieman Foundation at Harvard University. New York: Plume, Penguin Group; 2007.Google Scholar
  32. 32.
    Harrington W. A writer’s essay: seeking the extraordinary in the ordinary. In: Harrington W, editor. Intimate journalism: the art and craft of reporting everyday life. California: Sage Publications; 1997.Google Scholar
  33. 33.
    Rehabilitation as narrative: stories about everyday life, health and rehabilitation with amyotrophic lateral sclerosis. Aarhus: The Rehabilitation Centre for Neuromuscular Diseases [website in Danish]. Accessed 15 Apr 2014.
  34. 34.
    Trail M, Nelson ND, Van JN, Appel SH, Lai EC. A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. J. Neurol. Sci. 2003;2003(209):79–85.CrossRefGoogle Scholar
  35. 35.
    Wasner M, Bold U, Vollmer T. Borasio GD (2004) Sexuality in patients with amyotrophic lateral sclerosis and their partners. J Neurol. 2004;251:445–8.PubMedCrossRefGoogle Scholar
  36. 36.
    Marsden R, Botell R. Discussing sexuality with patients in a motor neurone disease clinic. Nurs Stand. 2010;2010(25):39–45.Google Scholar
  37. 37.
    O’Brien M, Whitehead B, Jack B, Douglas M. The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers. A qualitative study. Disabil Rehabil. 2012;2012(34):247–56.CrossRefGoogle Scholar

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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