Changes in authenticity

The use of medications for attention deficit hyperactivity disorder (ADHD) has been strongly debated because medications may alter the individual’s sense of authenticity. This chapter examines online forums that include young people’s experiences with ADHD medications, their sense of control over medication use, and the drugs’ effects on their sense of authenticity. It discusses the analysis of four Internet forums dedicated to ADHD issues using an ethnographic-discursive approach, and demonstrates that the results suggest there are two types of competing narratives—those of the young people, who express doubts about taking medications due to their effect on various psychological characteristics and especially on their sense of authenticity, and those of professionals, who uphold the medical perspective that regardless of the medications’ effects they are still the best option for treating ADHD. It covers how the clash between these two competing narratives resonates a more general struggle of people with disabilities for their rights. Finally, it discusses how social media echoes the struggle between individuals with disabilities and the establishment’s view of ADHD as a medical condition which should be treated accordingly, even at the cost of losing the individual’s authenticity.

Using illness narratives in clinical diagnosis

This chapter argues that illness narratives are a suitable instrument for differential diagnosis in practice. The study discussed is based on a corpus of doctor–patient interactions, i.e., encounters with patients suffering from epileptic or non-epileptic seizures and/or anxiety disorders, and for most of whom differential diagnosis is very difficult. The basic assumption put forward here is that the types of narrative can give clues to identify the types of seizures or attacks. The focus is on the ‘methods’ patients use in verbalizing the ‘auras’ preceding the seizures and the course of the seizures or attacks themselves. In particular, it pays attention to the procedures of resolving difficulties of verbalization, which occur during the production of the narrative. It demonstrates that preferences in the choice of narrative techniques allow a distinction between patients with epileptic seizures and patients with other types of fits or with panic attacks. Finally it suggests that knowledge of recurrent narrative patterns can help to recognize the syndrome presented, on condition that the doctor encourages narrative reconstructions and listens carefully.

How to use illness narratives in medical education

To be effective, (future) clinicians should gain an understanding of patients’ perspectives when it comes to having an illness. How patients experience their illness is best represented in illness narratives. Such illness narratives can be found on the website www.krankheitserfahrungen.de—the German version of the international DIPEx websites. This chapter discusses a pilot study of a teaching unit developed using website videos of illness narratives from patients with type 2 diabetes regarding weight loss. It discusses the aim of this pilot, which was to teach medical students to identify different subjective views of, and reactions towards, the pressure to give up a previous lifestyle. It investigates how, while students and the teacher appreciated the exercise and learned to better understand the patients’ perspective from illness narratives, the external conditions seem to be the main challenge for patients who need to implement lifestyle changes.

Using narratives for medical humanities in medical training

The University of Basel, Switzerland has developed a longitudinal medical humanities curriculum based on illness narratives and narrative medicine. The ultimate learning goal of medical humanities as taught in Basel is to foster narrative competence. A good doctor needs to be a good listener, a good storyteller, and should ideally be able to co-create an illness narrative together with a patient. Medical humanities consist of mandatory and optional elements. Blending evidence-based medicine, which is based on larger numbers of patients with similar characteristics, with narrative-based medicine, which is based on patients’ uniqueness, this programme provides medical students with the opportunity to develop and practice narrative medicine over the course of the six years of medical studies. This chapter discusses the programme and its place in medical education.

Retelling one’s life story—how narratives improve quality of life in chronic language impairment

Recent research in the field of narrative-based medicine has investigated the effectiveness of using illness narratives to stimulate coping processes. This chapter examines the utilization of the narrative approach in treating persons with aphasia—a neurological language disorder—many of whom experience reduced social participation and a change in identity. Although life-story work can support processes of sense-making, only a few studies use a biographic–narrative approach in aphasic patients due to their impaired language abilities. The chapter describes an adapted biographic-narrative intervention developed to assist with identity renegotiation and social participation. In order to show the benefits associated with the intervention and how the participants’ sense of self changed through the approach, the chapter examines a study with 27 aphasic people. It covers how the findings provide foundations for future work using biographic–narrative interventions to influence quality of life and identity renegotiation in people with chronic diseases.

Stories, illness, and narrative norms

Collecting illness narratives has become an established way to explore illness experiences. Often both collecting and analysing illness narratives are based on taken for granted narrative norms about how a narrative should look in order to be counted as a narrative and as researchable. Autobiographical illness stories are for instance generally supposed to be coherent and true. Many persons, especially with neurocognitive disorders, have problems living up to and adhere to these narrative norms, thus telling stories that risk being considered as non-stories or as incoherent and fragmented stories. A number of examples of conflicts between narrative norms and illness stories will be discussed. In conclusion, it is argued that researchers must use data collecting methods as well as analytical strategies that allow for alternative ways of telling stories.

Illness narratives as evidence for healthcare policy

Individual narratives about patient/family experiences of illness, and needs for information and support, can exert a powerful influence on policy formulation, particularly when a sensational story captures the attention of the media or general public. In this chapter, we situate the use and potential value of the narrative evidence within the messy world of policy making when trying to privilege evidence that brings diversity of voice and experiences on a topic, rather than individual stories. We explore the challenges associated with this type of experiential evidence, and the gap in translating such evidence to decision makers. We argue that both researchers and policy makers would benefit from a deeper understanding of each other’s worlds, and present examples of strategies to bridge this gap. We conclude by offering advice for policy makers regarding communication of their needs for experiential evidence, and advice for qualitative researchers regarding the translation of narrative-based findings for policy.

Illness narratives in the workplace

Why is there so little research on illness narratives in the workplace albeit the significant role of labour in society, the considerable increase of illnesses at work and high rates of sick-leave and early retirement? The importance of reconstructing illness narratives in the workplace for prevention, timely support, coping and staying at work is emphasized. It will further be shown how illness narratives are embedded in narrations on working conditions and return to work experiences. The mixed-method study focused on return to work trajectories of participants of vocational retraining. On this basis, this chapter discusses strategies of successful and failed arrangements in the workplace.

An illness narrative or a social injustice narrative?

This chapter discusses the difficulty faced by therapists when, instead of a story of emotional problems, they are presented in the course of a professional consultation with a narrative about social injustice. The chapter includes a detailed analysis of a single intake session and subsequent post-intake interviews, taken from a large study on intakes in mental health clinics with culturally diverse populations in Israel. The client–subject of this chapter presented herself to a mental health facility, claiming a state of crisis due to the downgrading of her employment status, which she attributed to systematic corporate injustice. During the intake interview, there were a number of disagreements between the client and the therapist. While the client sought to relate a narrative of injustice, the therapist insisted on identifying an illness narrative. This chapter argues that the battle of narratives is a political battle, and highlights the political power wielded by therapists in defining diagnoses and treatment recommendations.

The researchers’ role in re-constructing patient narratives to present them as patient experiences

According to Arthur W. Frank, illness is a call for stories. It is widely accepted that a narrative approach in medicine improves health care outcomes and there is some evidence that listening to illness stories of others has a positive effect also on fellow patients. However, when researchers collect patient narratives and prepare them to be used by, and to help, patients or other sufferers, they may change the nature of the narratives. This chapter shows how illness narratives are arranged on DIPEx websites as short statements and summarized under certain topics—with the aim to represent the whole range of patient experiences. It then discusses why people may listen to patient experiences, for example, to make informed choices on the basis of evidence-based experiential information, and/or to use experiences of others as ‘companion stories’ to complete their own illness narrative and to give it a ‘gestalt’.