Patient (2015) 8:41–49 DOI 10.1007/s40271-014-0088-6

ORIGINAL RESEARCH ARTICLE

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



Published online: 18 September 2014  Springer International Publishing Switzerland 2014

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.

Electronic supplementary material The online version of this article (doi:10.1007/s40271-014-0088-6) contains supplementary material, which is available to authorized users. J. Jeppesen (&)  J. Rahbek  O. Gredal The National Rehabilitation Centre for Neuromuscular Diseases, Kongsvang Alle´ 23, 8000 Aarhus C, Denmark e-mail: [email protected] H. P. Hansen Institute of Public Health, University of Southern Denmark, J.B. Winsløws Vej 9 B, 1, 5000 Odense C, Denmark

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.

Key Points for Decision Makers Narrative journalistic storytelling is a relevant and complementary research method for the study of patient experiences in amyotrophic lateral sclerosis (ALS), and possibly other severe rare diseases. The narrative journalistic story can demonstrate how a continuous process of normalizing anew one’s everyday life is a significant experience of daily living with ALS. The narrative journalistic story maintains or restores communication as the ability to speak deteriorates. The narrative journalistic story may enhance patient involvement by revealing areas of tension between patients and health professionals’ perspectives. The approach can be used over time to get an indepth understanding of the individual healthcare professionals’ engagement with the patient.

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1 Introduction Amyotrophic lateral sclerosis (ALS) is a rare neurodegenerative condition that progresses rapidly, with a multitude of physical impairments [1]. The ability to move, eat, talk, and breathe eventually ceases and many patients choose non-invasive mechanical ventilation and enteral feeding to sustain life for a period, while some opt for invasive ventilation to prolong life. Research into the complexity of living with ALS points to the suffering associated with isolation due to the loss of speech, which may erode a sense of individuality and humanness. It is a communicative pain that assistive technology and augmentative communication can compensate only partially [2–10]. Qualitative studies in ALS have suggested the terms ‘dynamic normality’, ‘ongoing change and adaptation’, and ‘biographical abruption’ to describe a patient situated in limbo of a terminal, yet chronic, disease. This period of limbo seems to leave the patient in a state of permanent emergency and continuous transformations of identity, with profound implications for interpersonal relations, family life and social interactions as communication gradually comes to a standstill [11–13]. A need to enhance the integration of the ALS patient’s perspectives and experiences into care and rehabilitation is recognized across health disciplines [14–16]. It is emphasized that palliative services should be introduced and implemented early in the disease trajectory [17], and researchers in palliative care see the ‘‘use of narrative research methods as a means to deepen our understanding of patient, carer and health professionals’ experiences’’ [18]. Palliative care communication researchers ‘‘suggest ‘new scripts’ that would empower both patients and health care professionals’’ as ‘‘narration provides those living with serious illness and their families a way to interpret, change, understand, manage, and respond to their diagnosis’’ [19, p. 2 and p. 19]. It is well-documented in medical terms how the disease progresses, and how the symptoms in general effect an average patient. The numerous consequences for family life and social relations have also been classified and categorized based on in-depth qualitative research interviews [20, 21]. However, what it is like for the individual to live with ALS can never be a classification as a categorized average. It remains a challenge for both health research and health care to develop methods that capture and communicate the unique individual impact of the disease and challenges to daily living. Telling stories has been shown as a way of accessing and communicating the individual’s perspective. Stories activate the individual’s narrative resources and interact between the teller and the listener, or between the patient and the health professional [22]. The work of stories have

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been thoroughly studied by health and illness narrative scholars Arthur Frank [23, 24] and Alan Radley [25]. Rita Charon, Professor of Clinical Medicine and Director of a program in narrative medicine, states the main reasons for using stories are their capacity to bridge four types of ‘divides’ in health care, which seem to separate professionals and patients. Each divide ‘‘reflects a peculiar dimension of the difference between the sick and the well’’; these are (1) the relation to mortality (‘‘doctors and patients differ fundamentally in their natural understanding of mortality’’); (2) the contexts of illness (‘‘doctors tend to consider the events of sickness rather narrowly as biological phenomena […] while patients tend to see illness within the frame and scope of their entire lives’’); (3) beliefs about disease causality (‘‘health care professionals and patients can have deeply conflicting ideas about the causes of symptoms and diseases and fundamentally different ways of thinking about those causes’’); (4) the emotions of shame, blame, and fear (‘‘Unless explicitly acknowledged and examined, these emotions and the suffering they cause can irrevocably separate doctor from patient, therefore preventing effective care’’) [26]. Narrative health researchers have suggested to ‘‘conceive of a broken narrative’’ as a mode of storytelling with individuals suffering from severe illnesses and disabilities; this is an approach that emphasizes ‘‘problematic, precarious, and damaged narratives told by people who in one way or another have trouble telling their stories’’ [27]. The aim of this article was to outline how perspectives of patients with ALS can be obtained using narrative journalistic stories, and to present results about the individual ALS patient’s experiences of daily living. We specifically focus on the tension between the individual ALS patient’s continuous process of constantly normalizing everyday life while at the same time adapting to disease progression, and the health professionals’ dedicated business of convincing the patient to face what they as professionals see as the realities of the disease. According to the literature reviewed above, it is a crucial challenge of living with ALS to navigate between two opposite agendas—being confident in a self-reliant everyday life on one side, and the health professionals’ demands of learning to become a compliant patient adhering to recommendations that would minimize the impact of disease on the other side.

2 Design and Methods 2.1 Participants To incorporate the progression of disease and possible corresponding shifts in the individual’s perception of

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illness, identity, and challenges to daily living we applied a longitudinal study design, with each participant being visited and interviewed at home four times in the year, with 3-monthly intervals. One participant died before the fourth interview, which was then conducted with the bereaved husband. Six participants (three men and three women, aged between 37 and 63 years) were recruited through the national expert centre for neuromuscular rehabilitation, with purposeful sampling criteria seeking variation with respect to ability to speak, compliance with clinical rehabilitation norms, educational level, and occupation. Five participants were married with 2–4 children. Two children were aged 8 and 11 years, and the others were grown-up. Four participants had grandchildren. Participants’ occupations were factory worker, dental technician, bank clerk, church gardener, dairy engineer, and mechanic. At inclusion, one participant’s speech was incomprehensible, and two participants lost the ability to speak during the study period; four participants chose invasive ventilation, and two chose a stomach feeding tube (Table 1). 2.2 Stories Narrative journalism was chosen as the research methodology both in relation to data generation and analysis of data. Narrative journalism is a non-fictitious genre, and we have shown how it can be applied in qualitative health research as a method of analyzing and interpreting individual patient experiences through the writing of stories [28–30]. Part of each visit was a long, slow-paced narrative interview conversation, accommodating the ever-changing situation and circumstances dictated by the disease. To accomplish a full interview and compensating for a deteriorating ability to speak, sufficient time, patience and, occasionally, interpretative assistance from a spouse

or a professional carer were needed. The level of accommodations varied according to disease progression and/or type of ALS. Participant 5, who was diagnosed with bulbar ALS, had lost her ability to speak intelligibly at study inclusion. She only sporadically used her speechgenerating device as she was neither comfortable nor trained in spelling and typing. Most of her utterances were interpreted and/or translated by her spouse, or he directly answered questions that were addressed to her. Throughout, the journalistic researcher had to make sure that she approved the husband’s construction and, consequently, the whole conversation proceeded extremely slowly. This inconsecutive kind of triangular dialogue was reproduced in, and as part of, the story because this is in fact the way communication with an individual with bulbar or advanced limb onset ALS actually takes place, sounds and looks like. In ALS, self-expression increasingly depends on modes other than the spoken word. When you perform a narrative interview, one must search for what else is present in the space emptied of regular conversation and distinct words. What do you see, smell, and feel? Such an interview does not transform to a story by way of a verbatim transcript only. It becomes a communication about what was there and what happened in the course of the meeting between the interviewer and interviewee—appearances, touches, sensations; the colour and shape of the tracheotomy tube, the dog wagging its tail, and other occurrences during the interview. Concurrently with the interview conversation, the journalistic researcher took notes of observations and events, e.g. the weather, the interior decorating, visits from health service professionals, children’s and spouses’ actions and statements. The researcher’s own impressions and reflections on-the-spot were also noted down. Two visits were supplemented by touring local places by car, while the conversations underway were recorded.

Table 1 Characteristics of participants and their ability to speak, breathe, and eat at inclusion and completion of the study period Participant 1

Participant 2

Participant 3

Participant 4

Participant 5

Participant 6

F

M

M

M

F

F

Age at inclusion (years)

50

51

53

63

58

37

Amyotrophic lateral sclerosis type

Limb onset

Limb onset

Limb onset

Limb onset

Bulbar onset

Limb onset

Time of diagnosis

October 2008

February 2009

July 2009

October 2007

August 2009

May 2007

Time of inclusion

January 2010

February 2010

March 2010

April 2010

June 2010

July 2010

Speech at inclusion Speech at completion

Unaffected Affected

Unaffected Unintelligible

Affected Unintelligible

Unaffected Affected

Unintelligible Unintelligible

Unaffected Affected

Ventilator at inclusion

No

No

No

Non-invasive

No

Tracheotomy

Ventilator at completion

Non-invasive

Tracheotomy

Tracheotomy

Tracheotomy

No

Tracheotomy

Tube feeding at inclusion

No

No

No

No

No

No

Tube feeding at completion

No

Yes

Yes

No

No

No

Sex

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As a starting point, the interview focused on what was important to tell health professionals about the participant’s life, needs, wishes, joys and sorrows. After each visit and interview, a story was crafted in accordance with criteria of the narrative journalistic story, using verbatim transcripts as monologue or dialogue, scenic descriptions of interview situations, observations of symbolic details, and digressions as author’s reflections [22, 28, 30–32]. E-mail correspondence with the patient about reflections, questions and answers before and after each interview also formed part of the story. The sound recordings were transcribed in three forms—transcription, paraphrase, and summary. Transcription was verbatim transcript; paraphrase was an abridged and rephrased reproduction of conversation with passages of verbatim transcript; summary was a briefly summarized reproduction of sound recording with a few verbatim quotes. See electronic supplementary Appendix A for an illustration of how some narrative journalistic techniques were used to transform the interview into a story.

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3 Results 3.1 Themes of the Stories On a general level, the six participants’ stories concerned 22 topics that could be categorized into six themes: (A) choice of treatment; (B) family life; (C) narrating about oneself; (D) impact of the disease; (E) health professionals’ preconceptions; and (F) biographical life story (Table 2). The topics listed were the main issues of that particular participant’s stories, but each participant mentioned subjects concerning all themes. In the following, we present results about how stories can communicate a normality of daily living amidst the impact of disease (Theme D) and convey patients’ attitudes towards health professionals’ preconceptions (Theme E). These themes were chosen as the most suitable to meet the focus of this article, namely the tension between constantly normalizing everyday life versus adapting to disease progression and health professionals’ recommendations. 3.2 Normality Amidst Disease

2.3 Readers The story was then sent to a readership chosen by the participant as his or her most significant health professionals. Selected professionals were hospital consultant neurologist, neurological specialist nurse, respiratory consultant, respiratory nurse, general practitioner, community nurse, physiotherapist, speech therapist, community occupational therapist, and community social worker. A survey about the usefulness of the stories was carried out in this readership of significant health professionals [29]. Finally, at the end of the study period, the four separate stories with the participant were published on the website of the national rehabilitation centre, appearing as one consecutive narrative [33]. These narratives were illustrated with a professional portrait photo of the participant. 2.4 Ethical Approval Approval for the study was obtained from the Danish state data protection agency and the ethical committee of the national neuromuscular patient association and rehabilitation centre. Participants were informed through an introductory letter explaining the study. Prior to the first interview, written consent was obtained after elaborate information and conversation about the study purposes. In addition, ongoing consent was obtained from each participant concerning the production, distribution and publication of stories, including the use of real names for the website publication.

Living with ALS did not entail abandoning either the idea or the reality of daily life as a kind of normality. One still experienced the humdrum of everyday life, and the stories invited readers to experience the presence and possible meanings of this triviality through descriptions of appearances and ordinary life in unnoticeable situations. Each participant’s stories had a distinct and consistent feature: the seasons of the garden, the dog’s behaviour, the TV being on, the husband’s cooking and cleaning, and the interior decorating. These occurrences were ordinary and unnoticeable scenes from everyday life, yet pervasively present in the ambience of the homes. Gazing out windows, having one’s dog for company, watching television, overseeing the housekeeping, or contemplating one’s furnishings were substantial and significant occupations. It’s noon now and a young woman from the home health service has arrived. Participant 2 is given water and food through his feeding tube, very routine. After that, she helps him to bed and put on his ventilator mask while I pack my stuff. Bine, the pug who has been faithfully snoozing in her basket by the radiator during the entire interview, gets up and disappears into the bedroom. She lies soundly asleep on Participant 2’s duvet, when I pop my head in to say goodbye and ‘‘see you in February’’. (Participant 2, Story III,) [33] Such ordinary observations substantiated that an everyday persisted, reassuring the existence of a kind of normality concurrent with the abnormalities of illness.

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Table 2 Topics of stories categorized in themes A–F

Participant 1

A. Choice of treatment

B. Family life

Opting for stem-cell therapy as a means of hope

Being terminally ill as a mother of under age children

C. Narrating about oneself

Participant 2

Participant 3

Participant 4

E. Health professionals’ preconceptions

The impact on social intercourse of emotional lability

To travel despite the doctor’s advice. To put up with health professionals’ rejection of believing in an unexpected destiny

F. Biographical life story

Losing manly strength, the use of your limbs, and an irreplaceable soccer comradeship. Being ashamed of your tracheotomy ventilator. Self-pity and suicidal thoughts. Losing your voice To regret your tracheotomy ventilator

To become a grandfather knowing that you will not live to see the grandchild grow up. Realizing that you cannot walk your daughter up the aisle

Losing the ability to communicate, and losing friends

How to get your story told in a selfrespectful way

Participant 5

Participant 6

D. Impact of the disease

Learning to become dependent and accept professional help. Being able to sit alone on your own without bitterness Losing the ability to speak

The trouble with narrating and being narrated

Common daily activities continued to take place while living with ALS, sustaining a sense of normal reality of everyday life. The children argue with their mother, a friend drops by for coffee, a daughter and son-in-law borrows the trailer, a brother and his wife come to play cards, a carer decorates the home for Christmas, or one’s old mother dies. The participants’ appearances reflected a duality of normality and abnormality. Looking both normal and abnormal conveyed a state of being ‘healthy with illness.’ The following dialogue about tube-feeding and non-invasive ventilator was carried out with the help of a communication device and embedded within a scene depicting a

Fearing the professionals’ prognosis. The need for taboos and nondisclosures to keep agony at a distance Putting up with health professionals’ preconceived ideas

The past and memories

masculine style, interrupted by a pair of grey woollen socks. Participant 3 is wearing a long-sleeved T-shirt, red and bearing the print ‘‘EST. 1986 Peak Performance’’. It suits him and is matched by a pair of blue denim jeans. On his feet, thick grey woollen socks. ‘‘I’m doing really well,’’ he writes, when I ask if he got used to his tube. Do you feel having gained weight and more strength? His answer is emerging, slowly multiplying letters to words to sentences on the display of the Lightwriter. I have time on hand and note that his face is rounder than the last time we met. The beard is trimmed, and

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around the neck is a leather cord with a tubular silver pendant; his gold wedding ring glimmers on his lefthand ring finger. ‘‘Since I started using the ventilator, I’m doing really well,’’ the display says. (Participant 3, Story III) [33] 3.3 Health Professionals’ Preconceptions Hope was a reappearing subject in Participant 1’s stories. We talk about the professionals who have become part of Participant 1’s life and how they influence the feeling she has of still being able to get a lot out of life and contribute something positive to the family. She is critical of, or rather angry with, the professionals from whom she only hears negative things. ‘‘Those of us with ALS know that we will die of ALS but it doesn’t have to be the focal point of everything.’’ Do you think it’s too much? ‘‘No, but when they inform about the latest research they tend to be very negative.’’ Try to explain the very negative aspect. ‘‘They have chosen to say that the latest research doesn’t really contribute anything. But there’s no reason to tell me that they don’t think something will come up within the next ten years. I’m still allowed to hope, am I not?’’ So that’s a way of taking away hope? If they talk like that, does it feel like you are being deprived of hope? Participant 1 is nodding. ’’As a professional, you can quickly deprive someone of all hope and happiness by being much too negative and oblivious to various problems’’, she says. (Participant 1, Story III) [33] In the following and last story, the notion of hope was brought up again. On my way over here, I was reading the three stories we have made so far. Then I began to think, ’What is it that I get out of reading those stories?’ And there are especially two things that stand out: one is about having hope. You say you’re allowed to hope. I guess in some way because hope equals life. Maybe someone will say, ’What if that’s a false hope?’ ‘‘False hopes can be the same as self-deception. That I think ‘I’ll never be on tracheotomy ventilation’ or ‘I’ll keep walking’. Unless there is some kind of miracle, I know that’s the way it goes. But to give up hope because of that, that’s far out. There are only a handful of people who experience a spontaneous remission. Then there are quite a few who stay in good shape on a ventilator. I’m also hoping that I will make it – manage to live a good life anyway. In

Japan, when you’re on a ventilator, you don’t have the option to have it turned off. Some people, when they can’t use their eyes anymore, they’re really lost. But, here in Denmark, when you have the option to have it turned off, I don’t see the problem. I can do an incredible number of things with my computer over there – do the accounts, home banking, send texts and e-mails, go online, order new clothes.’’ So you feel there’s a lot you can do? ‘‘Yes.’’ But when you can’t use your eyes anymore, then you won’t want to be here anymore? ‘‘No,’’ says Participant 1 with a sorrow in her voice which seems to beg for forgiveness for her not being capable of living like that. So the hope you have is not a hope of being cured? If you believed in a cure, would you call that selfdeception? ‘‘I’m still hoping that it might be!’’ Well, you can’t rule anything out. ‘‘No, you can’t.’’ (Participant 1, Story IV) [33] In clinical, medical terms, ALS is most often described as being extremely stressful, causing hopelessness, anxiety, despair, etc., leading to a defeatist approach from the medical establishment [14, pp. 19–24]. For Participant 1, hopelessness is nurtured by what she sees as a nihilistic attitude among some health professionals. In her view, hope is part of imagining how to live with ALS, and it is not a matter of awaiting a miraculous cure, although hoping for that is never totally abandoned either. Participant 1 indicates that being allowed to hope is a precondition for thinking about and incorporating the future, no matter what it leads to. Participant 6’s stories contained several examples of narrative antagonisms. She spoke about and against ‘overinformative’ professionals, who view you as an ‘average’ and try to fit you into a ‘cake tin’. One of her counterarguments was that an expert, no matter how competent, can predict an individual course of disease. ‘‘I sometimes feel over-informed. Then someone tells me that I’m lying to myself. No! I know what the consequences are. But I don’t need to be confronted with them all the time. […] I don’t need to have them explained to me all the time. And again: I fully respect the experience professional people have and I know I’m not smarter than them. But I am and will always be the smartest one when it comes to my own body. Only I know what I feel.’’ So you’re saying that some of the professionals working with ALS sometimes do more harm than good?

How Narrative Journalistic Stories Can Communicate

‘‘I think so. And I think there’s a difference between being my age and being older. I may not quite as readily accept authority as a person who is 75 years old. It’s probably easier to convince them that ‘this is how you feel’. I would object to that, but people who are a bit older have another way of thinking. If a doctor tells them something, he’s right of course. I don’t necessarily think he is. And it’s not out of disrespect for his education; it’s a matter of him learning from me too.’’ What is your advice to healthcare professionals and the system about your ALS type of person? ‘‘My advice would be not to typecast people but to listen to each individual. Those cake tins! They don’t always fit, do they! It’s because they see so many people with ALS, they’ve decided that on average ‘if you’re like this, then you’re there’ […].’’ I think some of the professionals would say, ’We’d like to tell you this already now because in our experience, you can’t begin to prepare too soon’. ‘‘Yes, but why meet trouble halfway?’’ I think they have the idea that you’re able to plan ahead that way. ‘‘Hmm, it doesn’t really help me. That’s one thing I’ve discovered about this disease. No one can tell you what’s going to happen. Because it’s so different what people experience. So why plan or worry about something that might never happen?’’ Participant 6 has not met any other people with ALS and that is a ‘‘deliberate choice’’. (Participant 6, Story I) [33]

4 Discussion We have shown how normality—or the continuous process of normalizing anew one’s everyday life—is a significant experience of daily living with ALS. The abnormalities caused by disease progression are complemented by affinities to normality, e.g. despite an altered state of body and mind, the individual insisted to undertake everyday doings and care about one’s appearance. Important experiences exist in the normality of lives, and our study suggests that knowledge about such experiences can be gained through storytelling. It is emphasized in the literature that health professionals, people with ALS and their carers ‘‘understand each other’s standpoint’’ [16]. We argue that the narrative journalistic story is capable of communicating some of such ‘standpoints’ by its capacity to narrate what is not ill and abnormal in living with ALS. The narrative journalistic interview enables the participant to tell about living with ALS as both being able to and succeed in establishing a

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day-to-day life that resembles the trivialities of ordinary lives for good and evil. It is an existence that is not just waiting for death. The literature about living with ALS focuses on the increasing isolation owing to failing communication. We find that our approach can contribute to develop a practice that maintains or restores possibilities and abilities to tell about yourself and your situation to others. It is also a practice that can establish a communicative environment where patients’ and health professionals’ differing opinions can be shared [34]. In particular, the stories revealed conflicting views between patient and health professional about the extent to which the prognosis of disease should be disclosed. Storytelling as employed in this study seems capable of expanding the scope of meaning and also the potential of action in living with ALS. It opens up the possibility of sharing experiences of living with the condition, particularly so as communication abilities are compromised by progressive dysarthria and increasing social isolation. This assumption was supported by a survey conducted by the first author, in which a majority of the significant health professionals selected by the participants as formal readers assessed the stories as relevant and useful for their professional duties [27]. These readers commented that the stories both accommodated the heterogeneity between individuals and communicated the individuals’ experiences [27]. Analysis of the participants’ reactions to the process of narrating showed that the narrative journalistic story was viewed as a tool by way of which one can be understood by others, and by oneself. The story was an opportunity to make oneself heard and, in some instances, the only option to communicate with others other than the closest relatives. Participants experienced that the story gave oneself an importance in relation to readers, paving the way for reestablishing human intercourse and reducing shyness and shame. The story also acted as a means of communicating what one dared not say face-to-face to others [29, 30]. On the whole, the study implies that health professionals can make use of narrative journalistic stories in clinical ALS settings to enhance the integration of the ALS patient’s perspectives and experiences into care and rehabilitation. This integration of perspectives and experiences is called for across health disciplines [14–16]. 4.1 Limitations In all stories, one or more people who are related to the ALS patient occurred. These significant others were sometimes present at, and contributing to, the interview conversation. However, we mostly hear about a spouse, children, children-in-law, parents, grandparents, siblings,

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close friends, neighbours, former colleagues, etc., through the main character’s statements, narratives, and interpretations. This implies that the perspectives of significant others are mainly absent. The tremendous stress and burden on relatives are more or less absent, although these are important aspects of ALS illness trajectories [35–37]. For the health professional and others involved to form an overall impression of the family situation in ALS cases we also need to include and involve the opinions and narratives of close relatives. The narrative journalistic story can be an option for this purpose and, to this end, a thorough study of categories of participants as well as story dissemination procedures is needed. Which relatives are most important to select, and who are relevant readers? This study comprised six participants through 1 year of each individual’s life with ALS. The study does not show the effect of narrative journalistic storytelling through a span of years living with ALS. Neither does it illustrate the potential of implementing such stories immediately after being diagnosed. These are limitations that must be taken into account when results are to be generalized to ALS patient populations, or possibly to other complex, chronic, terminal diseases. Future studies should include more participants, with representation of different socioeconomic status, and also old people with ALS. It is necessary to examine in more detail how readers from various health professions make use of narrative journalistic stories, and how the production of the stories is integrated into the multi- and interdisciplinary contexts of ALS health care. Education and training of journalists, or health professionals, to specialize in combining narrative journalism with health and illness communication is another key issue to deal with in future studies. The participants experienced increasing difficulties with their ability to speak, and a few times a spouse or a professional carer acted as an interpreter. Furthermore, to a growing extent the conversation relied on the intervention of communication devices which work very slowly. It restricted the flow and freedom of the communication, and sometimes led to ambiguities concerning the intended meaning of utterances. Although the participant approved every story before publication, it is possible that some phrasings would have occurred differently if the participant had been able to communicate smoothly. However, at the end of the day the narrative journalistic story provided an opportunity for the patient to communicate at all, being an alternative to silence and isolation.

5 Conclusions For people with ALS who lose their ability to speak, the narrative journalistic story is an opportunity to give others

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an insight into silenced experiences. The story (a) maintains or restores communication; (b) creates normality anew; and (c) reveals areas of tension between the patient and health professional. By showing that living with ALS is a constant struggle of leading a life as normal as possible, and how important this hard work is for the patient, narrative journalistic storytelling in an ALS health care and rehabilitation setting can improve mutual understanding and enhance patient involvement. The health professional is called upon to hear what the patient wants to communicate as an individual. It may give voice to underlying differing perceptions of the realities of disease and in this way educate health professionals that a medical prognosis should be complemented by understanding the individual’s unique experience of vulnerability. This applies, in particular, to rare diseases where insight is difficult to obtain. 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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How Narrative Journalistic Stories Can Communicate the Individual's Challenges of Daily Living with Amyotrophic Lateral Sclerosis.

To complement the clinical and therapeutic knowledge about the symptoms, prognosis, and social implications of amyotrophic lateral sclerosis (ALS), he...
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