Abstracts

”I never intended my life to be like this”

Lise-Mari Lauritzen
UiT The Arctic University of Norway   

The paper focuses on how Arnhild Lauveng’s pathography Tomorrow I was always a Lion  (2005). Lauveng had a diagnosis of schizophrenia for about 10 years until she recovered. In the book, she tells about her own experience on being ill and how she managed to gain hope and strength. The book has two main projects: the story of recovery and the story of sharing insight about a serious mental disorder. The two central themes of the book is conflict and identity something which is illustrated through the analysis of plot and metaphor. The plotanalysis shows the authors intention of sharing knowledge about schizophrenia toghether with the importance of maintaining some hope through the illness experience. Lauveng’s book also depicts the challenges of being ill for several years and the challenges this causes for a young adult.

The book also focuses on how the use of language inflects on our understanding of illnesses. Lauveng is critical towards the stereotypical use of language when it comes to mental disorders, as the same time as she end up using some of the same phrases and patterns as she critizes. The challenge is the same as Susan Sontag mentions in her book on being ill.  Tomorrow I was always a Lion is unique by Norwegian and European standards. The book is translated into several languages for publication in a number of countries (The Netherlands, Poland, Germany, Denmark, Sweden, Finland, Iceland, Spain and Russia).  

Pathographies about interruption:
The idea of the expected life in Swedish narratives about cancer and childlessness

Katarina Bernhardsson
Lund University

This paper focuses on two different kinds of pathographies: on the one hand narratives of being stricken by a life-threatening illness, on the other narratives about illness that renders the writer childless.

In my analysis, I aim to show how these narratives, in very different ways, portray illness as a divergence from expectations, as an interruption of the western expectation of a predictable and coherent life course. How is this idea of the expected life developed, metaphorically used, and challenged in these pathographies? How do they on the one hand strive to live up to the norms of a good life, and on the other to question them? And how do the writers attempt to construct a new progression after the interruption?

My analysis is based on Swedish contemporary pathographies, published in both book and blog form, and the discussion will be related to cultural norms and the Swedish health-care system as well as theoretical work from medical anthropology, sociology and narratology.

“There are more things in heaven and earth!” How knowledge about traditional healing affects clinical practice. Interviews with conventional health personnel

Anette Larsen, Anita Salamonsen, Agnete Egilsdatter Kristoffersen, Torunn Hamran, Bjørg Evjen, Trine Stub
The National Research Center in Complementary and Alternative Medicine (NAFKAM)
UiT The Arctic University

Background: The Sami today are closely connected to the traditional folk medicine. Religious prayers of healing (reading) and the laying on of hands are examples of the methods that they employ. In this study, we will examine the knowledge and attitudes among health personnel regarding traditional healing in areas where this is used, and how this knowledge affects their clinical practice.

Method: Semi-structured individual interviews (n=32) and focus group interviews (n=2) were conducted among health personnel in two Sami communities in Norway. The text data was transcribed verbatim and analyzed based on the criteria for content analysis. The codes were defined prior to and during the data analysis (mixed type). Six themes were identified.

Results: The participants had acquired their knowledge of traditional healing through their childhood, adolescence and experience as health personnel in the communities. They were all positive to the patients’ use of traditional healing. They justified their attitudes stating ”there are more things in heaven and earth”, and they had faith in placebo effects of the treatment. The health personnel respected their patients’ faith and facilitated the use of traditional healing. In some cases they also conducted rituals on patients who wanted this. In this way they changed their clinical practice.

Living with mental illness: Production and dissemination of digital health narratives

Marianne V. Trondsen & Hege K. Andreassen
Norwegian Centre for E-health Research

It is assumed that mental illness affects a third of Norwegians annually, with a range of practical, social, emotional and physical implications both for the individuals suffering from the illness themselves as well as for their family members. Moreover, shame and blame are common experiences for people living with mental illness. Problems related to social stigma and negative attitudes related to such illnesses are well known. Hence, the need to develop and improve mental health services is urgent. In order to develop a more user-centered mental healthcare, it is essential to increase the knowledge about people’s own experiences, challenges and needs related to their life with a mental illness. Patient narratives, as well as next of kin narratives, should be produced and better explored. However, there is a range of barriers in order to get access to peoples’ mental illness narratives. The aim of this paper is to reflect on how digital media and social science methods can be combined to explore and communicate patient and next of kin mental illness narratives. The Internet provides new opportunities for information, communication and dissemination of peoples’ health and illness experiences; to lay people, health professionals, caregivers, policy makers and the general population. We will discuss methodological challenges and advantages with research-based production of peoples’ health and illness narratives. Further, we want to introduce a discussion on digital dissemination, i.e., whether video-, audio- or anonymous text clips from interviews, are suited to communicate the everyday experiences of mental illness to health professionals and people living in a similar situation.

Performing Patients’ Stories in Norwegian Contexts: Challenges and Opportunities

Wenche Torrissen
Volda University College 

Using the medium of theatre to tell patients’ stories is a developing practice in a variety of contexts in Norway. Patient’s stories about medical states and diagnoses, including cancer, autism, AIDS and dementia, are regularly performed at major Norwegian theatres. Patient’s stories are performed for medical students as part of their professional training and ethnotheatre performances are used to tell patient’s stories in healthcare and community contexts. In this paper, I will explore the challenges and opportunities of using performance to tell patient’s narratives in commercial settings, medical education and research. What is the value of performing patient’s stories in these different contexts? What are the aims of these performances? How can performance recover and interrogate the meanings of lived experience? What are the strengths and limitations of using performance in education and research? What are the attitudes towards performance as research in these contexts? What are the ethical dilemmas that directors, actors, educators and researchers meet in their endeavor to stage patient’s narratives? And how can these performances potentially contribute to social justice and social change agendas such as the development of more patient-centered healthcare systems? These are some of the questions that I will address in this paper.

Suicide as an option? What we can learn from past and how we can think about perspective future with dementia?

Dragana Lukic
PhD student at the Centre for Women's and Gender Research (Kvinnforsk)

The number of persons with dementia is growing rapidly leaving huge pressure on health care institutions to provide good quality of life for upcoming patients. Even though there is still no hope to cure, the great amount of resources is directed to biomedical and pharmaceutical research that emphasizes understanding of dementia as a loss of self and reinforces stigma.

The medical understanding of dementia influence on the way persons with dementia perceive themselves and others, leaving not so much hope for good quality of life after diagnosis is established. The dominant biomedical understanding goes in line with legislation of assisted suicide, because both of them prescribe the life with dementia as less livable or even impossible to live. Such understanding has extreme consequences for persons with dementia who usually have in mind suicide as an option. This paper will engage in feminist discussions about suicide, using the example of unsuccessful suicide of Alice Howland in the film Still Alice (2014) and the successfully executed suicide of Sandy Bem, feminist scholar who died 20th of May 2014. Alice and Sandy are both university professors diagnosed with Alzheimer’s disease who chose not to endure the disease. However, Alice doesn’t manage to commit suicide and she continues her life appreciating pleasures in moments. In relationships with her family Alice acknowledges the values of sensual and experiential ways of being in the world most explored in arts.

This paper will enlighten the questions of suicide that go beyond bodily boundaries and will discuss ethical issues related to assisted suicide as an option. The analysis will be conducted by using visual and textual material and examples from fiction and reality, diminishing distinctions between them.

Narrativity

Rolf Ahlzén
M.D, B.A., PhD

For at least three decades, the concept narrativity has been occupying an ever more central place in social sciences and in the humanities. As a significant contribution with far reaching influence, Jeremy Bruner wrote his “The narrative construction of reality” in 1991. During the 90ties, it made its way into medical humanities, largely due to the rise of so called  narrative based medicine. Narrativity is now taken for granted as a fundamental component of human life and, consequently, in our understanding of it.

The role of narrativity has, however, not been uncontested. Philosopher Galen Strawson has  delivered heavy critique and his “Against narrativity” has been discussed for a decade by now. Strawson discerns to assumptions in the narrativity thesis, the psychological and the ethical. He rejects both. Martha Schechtman has produced an important response, that attempts to rescue a weaker form of the narrativity claim.

My intention is to take a look at the concepts, assumptions and ambitions of the  idea of narrative in medical humanities and in clinical medicine. I will show that while narrative and narrativity still represents tools that may be of value in  medical humanities, it is at the same time urgently important to reduce the scope and ambitions of the narrative medicine movement.

Ageing and dementia narratives in contemporary Norwegian novels

Nora Simonhjell
Associate professor, Ph.d.
University of Stavanger

There are a growing tendency in contemporary Norwegian novels to address ageing, dementia and the living conditions for older people. I am especially interested in dementia narratives. Dementia is an illness that has consequences for the person’s ability to orientate in time and place. Memory loss and the decline of language and other cognitive abilities are common symptoms. How are the demented old and demented person portrayed in these novels? What kind of representations and understandings of the disease are at play?

Based on a theoretical frame from ageing studies and studies of humanistic and narrative research on dementia, I am going to address some aspects from novels by Merethe Lindstrøm, Anne B. Ragde, Sunniva Lye Axelsen and Cecilie Enger and others.

Key words: Contemporary Norwegian novels, dementia, representation, care, ethics

Developing patient stories to promote quality improvement across multiple care contexts.

Gro K Rosvold Berntsen, D Gammon. 
Norwegian center for eHealth research. 

Background:
In a fragmented care system, patients with long-term and complex needs, often experience multiple uncoordinated professionals involved in their care. Patient stories may promote a shared understanding across professionals who lack a common terminology.

RQ: How can we elicit patient stories that illustrate health care challenges in terms of meeting patient needs, values and preferences, and inform care improvement?

Methods:
Plan-Do-Study-Act methodology with cycles of 1) assumptions and planning 2) Data collection 3) Review in light of assumptions, 4) Re-design.

Results/ Discussion:
Three cycles of development were performed:

1. Assumptions (A): Only patients are always present in their health care pathway, and know how care impact health and life. Based on patient diaries of health and life events, we performed 5 interviews over a year. Learning points (LP): Coping and self-management were predominant in patients’ stories, while health-care events were secondary. Data collection was resource consuming.

2. A: The diary was substituted with a patient history based on the electronic health record (EHR). The EHR-history was reviewed together with the patient in one interview. LP: This required fewer resources, and elicited rich stories on care issues. Patients focused on the “aggregate” experience with service providers.

3: A: As an output for quality improvement purposes, we created a “condensed” story for each interview. Patients were invited to review and provide consent for external use. LP: Patients with the most complex conditions did not perform review.

Six of eight stories were published in a Norwegian report. These are powerful agents of illustrating patient experienced challenges and getting professionals from different backgrounds onto the same page. 

Case study: A visual narrative of living with CFS/ME

Silje Vagli Østbye and Maria Fredriksen Kvamme
Ph.d. students
The University of Tromsø, Department of Psychology and Department of Community Medicine - General Research Unit

Introduction: An increasing number of adolescents fall out of social development arenas because of disorders that are poorly understood in our health system. Such disorders are often referred to as medically unexplained symptoms in the research literature. The objective of this study is to take a closer look at young persons with experiences of these types of health problems, and explore possible potentials for growth, dialogue and understanding.

Method: As part of an overarching interdisciplinary project, we have been able to follow 17-year old Sebastian with CFS/ME for one year. During this time we conducted several interviews, and followed Sebastian’s participation in a film project as part of our methodology.

Result: Through our encounters with Sebastian we gain access to his lived experiences with CFS/ ME. Central to this is the film “Derailment”, which is a visual narrative of Sebastian’s illness experience and his road towards recovery. In both interviews and the film, he addresses insecurity, isolation and ambivalence between the need for autonomy versus the need to belong. Sebastian’s interest for film is central to his everyday life and  his aspirations for the future. He emphasizes a wish to express himself through “a symbolic film”, where he pictures emotions that he experiences but lacks words to fully describe.

Discussion: Through a preliminary phenomenologically informed interpretation of our data, it seems that Sebastian’s physical symptoms are translated into processes of meaning making, where the central themes revolve around negotiations of identity and relationality. The visual methods may have provided both the audience and the filmmaker with a language for, and an understanding of, the preverbal and embodied experiences of illness.

The cancer may come back – Experiencing and managing worries in a rural North Norwegian village after treatment Powerpoint presentation and video/audio

Magdalena Skowronski, Rikke Sand Andersen, Mette Bech Risør, Nina Foss
Nafkam – ISM – Helsefak

Abstract

Due to successful treatment procedures, the number of people with cancer who go through treatment and after this start adapting to an everyday life is growing. Worrying about a possible relapse is though still a constant concern to many. Little is known about how such worries are conveyed in interactions with people in everyday life. How do chronic cancer patients experience and manage worries about bodily sensations and possible signs of cancer relapse, not as an individual enterprise but as a socially embedded management, in a context of close or dense social relations?

To explore this, a study was done based on a one-year ethnographic fieldwork in a rural community of less than 3000 inhabitants in coastal Finnmark. Here 10 core participants, who had gone through cancer treatment from 6 months to 5 years earlier, were interviewed monthly, narrating their illness story and their illness worries. Doing participant-observation, the fieldworker also took part in their everyday activities, including families, friends and co-villagers.

By contemplating worries as relational and social entailments, capable of creating social realities, the study highlights how participants’ experience and deal with being “bekymra” (worried) about a possible relapse, while integrating and taking into account the social landscape. While we find that participants prioritize to protect family members, by the avoidance of sharing worries, they express the need to share emotional experience and worries within certain friendships and certain social arenas. However, both comfort and challenge is characteristic of sharing worries in the context of the socially dense public of the relatively isolated village.

Overall, the study contributes to the writings on emotions in anthropology, and to the unbundling and understanding of how emotions and illness worries configure and relate to various social contexts.

The trickster and his neighbor, the engineer.

Lill Tove Fredriksen
UiT The Arctic University of Norway

“You need to come! We have a patient here. He doesn’t speak any Norwegian, and I think he is trying to leave. And he is probably psychotic!” I received this phone call from a nurse when I was working as a Sámi interpreter and consultant at the University Hospital of Northern Norway. This call led me to a meeting with a Sámi trickster. A trickster is a figure that is much described in the oral tradition of the indigenous peoples in North America. A trickster is cunning, crosses lines, has a sense of humor and seeks for opportunities to survive and cope in different situations in a shifting world. In the Sámi oral tradition we have many stories about Sámis who get into situations where they have to ‘birget’, cope in situations where they find themselves disempowered. The trickster in the hospital was an elderly Sámi man, Juvva. What kind of possibilities does he have to cope and to empower himself in a place where he is totally decontextualized? An environment of white walls, of non-Sámi speaking staff, also dressed in white, and the man in the bed next to him, a retired Norwegian engineer. Based on my meetings with Juvva and the stories that I heard about him during his stay at the hospital, I will provide contextual interpretations of Juvva’s non-verbal actions and the non-verbal interaction with his neighbor, the engineer, and how they function as a way of coping at a Sámi contextual level.

Title: The importance of hope in the context of healing - Narratives on hope after serious brain damage

Gabriele Kitzmüller
PhD, RN, LGN,CNS

University of Tromsø, The Arctic University of Norway, Faculty of Health Sciences, Department of Health and Care Sciences, campus Narvik

The presentation is based on a Norwegian qualitative study that explored the existential meaning of couple’s long- term experiences of living with stroke. Interviews with stroke survivors and spouses were analyzed using a Heideggerian- inspired approach. This presentation is part of the preliminary results of a secondary analysis of these interviews. The aim is to illuminate the existential meaning of hope by exploring stories told by stroke survivors and spouses.

Stroke is a life-threatening and disabling illness provoking existential crisis. Commonly, stroke survivors experience changes in their physical and cognitive abilities and their self-concept due to various losses. The spouse suffers due to caregiver burden, loss of shared activities and network and sometimes, even loss of work-life and health. The significance of hope to endure the multiple challenges and crisis after stroke is obvious in the interview texts. Family and friends promote stroke survivors and spouses’ hope. Health professionals’ attitudes have a crucial role in how couples’ meet their future challenges. Hasty prophecies, based on medical parameters and not on individuals’ overall potentials, may be devastating for participants’ views on their life situation. On the other hand, health professionals’ empathic listening, impassionate caring and targeted interventions have the opposite effect and promote couples’ hope and life spirit.

The narratives of Celia and her husband Tom illustrate these findings. The couple’s life world turns upside down after a serious illness condition leading to Celia’s extensive cerebral hemorrhage. Celia and Tom are an engaged middle-aged couple, at the height of their work-life career, with two adolescents still living at home when the stroke hits them. Their narratives together with the stories of other participants, show the importance of hope in the context of healing and will be analyzed and reflected upon using the philosophical work of Marcel, Buber and Løgstrup.

Category: Ethical implications of patient stories

Patient stories and the concept of livsmot

Anne Clancy

Professor
Doctor of Public Health (PhD)
Department of Health and Care Sciences
UiT Harstad
The Norwegian University of the Arctic

Patient stories and the concept of livsmot

The public health community recognizes that the health promotion concepts of settings, participation and dialogue are necessary in order to achieve public health goals. A pathogenic focus, based on generalized knowledge applied to particular cases, continues to dominate the field of public health. There is a need for contextual life-world knowledge that creates an understanding of persons and illness within a broader framework of culture, health, and well-being. The Danish/Norwegian concept of livsmot relates to a force or vitality that facilitates life and hope. The purpose of this study is to provide insight into how stories can promote livsmot. Understanding what facilitates livsmot is important. This current study is based on phenomenological insight gleaned from a selected sample of health promotion studies, within an ethical philosophical framework. Showing an interest in a person’s stories can help safeguard their integrity and promote their well-being. Thinking stories or telling stories to an attentive listener can facilitate imaginative journeys. These imaginative journeys can generate hope and vitality.  Igniting a spark that kindles livsmot can allow the person, young or old, to be borne beyond their given situation. 

Stories from the Lepra-museum in Bergen

Marie-Theres Federhofer 

The importance of patient stories and user involvement in research and evaluation of health care services 

Solveig Bakken, nurse and study participant Anita Salamonsen, senior researcher

National Research Center in Complementary and Alternative Medicine, Department of Community Medicine, Faculty of Health Sciences, UiT the Arctic University of Norway

A patient and public health focus on the transformation of people from consumers of health information and care to active producers of information and care is increasingly seen in research reports and public health programs. Narratives about patients’ health and illness experiences have an established place in the study of the nature of illness and lay encounters with medical expertise and health care services. In this presentation, we argue that patient narratives about patient pathways should include not only patients’ experiences from health events, but also experiences from life events important to understand the most crucial health care needs of the individual patient. There is widespread recognition that involving service users can help improve the quality of services, and studies show that there is potential to involve service users in every stage of research and evaluation. We will share our experiences as participant and researcher in studies involving health service users living with serious illness. Different lives significantly influence self-defined health care needs, and life stories as learning resources can make a difference in terms of human commitment to cooperative action and inquiry, and to social as well as political learning. In public healthcare systems aiming at involving patients in treatment processes, acknowledging the co-existence of differing lives and health care needs as well as differing lay and medical epistemologies may be of great importance to define and reach goals of treatment and compliance. 

The Case in the Case in the Case. 

Michael Schmidt
UiT The Arctic University of Norway

About Arguing in Cases and Construction of Theory: The Example of Sigmund Freud’s The Interpretation of Dreams 

Perhaps more than in other medical fields the study of mental diseases is dependent on the production of narratives by patients. Sigmund Freud' s The Interpretation of Dreams (1900) is a book full of case narratives and Freud’s method was to make patients tell stories. Then he tried to find common structures in these stories by hermeneutic interpretation. 

His method has, by the virtuous Italian historian Carlo Ginzburg, been compared with methods of the art historian Morelli, who managed to unmask forgeries of pictures or to identify unsigned pictures by studying apparently unimportant details such as ears and fingernails and with methods of the fictional, famous English detective Sherlock Holmes. 

The difference is that neither Morelli nor Holmes tried to bring their mode of observation up to a theory, as Freud did. One can read The Interpretation of Dreams as a classical case study: The argumentation with cases leads to the production of hypotheses that can be proved, falsified and differentiated by further research. And this has been done by Freud himself and by a growing number of disciples and followers, who made psychoanalysis to one of the most influential theories of the last century.

Pathographies and epiphanies

Linda H. Nesby
UiT The Arctic University of Norway

Epiphanies is known from both religious and literary texts where it includes an experience of sudden wisdom or insight. Epiphany had its heyday under the New Criticism in the 1920s where it used to be a most frequent characterization of writers as differently as Byron, Joyce, Woolfe, Proust and William Faulkner. Nowadays, however, it seems to be somehow in wane. Epiphanies is often linked to a spiritual aspect, which may also be connected to a personal experience. The epiphany within pathographies often marks a biographical turning point, as Arthur W. Frank explains, and often signals personal growth. As Anne Hunsaker Hawkins has notified, some of the popularity of the pathography genre may be due to the aspect of personal growth.

If, and how, you render your experience of having an epiphany may say something about you as a person. I would like to discuss how the epiphanies in Kristian Gidlund’s pathography In this body of mine. The Journey to the End of Life and the Beginning of It All (2013) may render something about the author. Gidlund was a non-religious person but at the end of his life, his blogposts centered about epiphanies or visions regarding his afterlife. I will study these epiphanies, and discuss Losey’s terms “delayed epiphany”, the “direct epiphany” and the “dream epiphany” in connection with Gidlund’s text. The overall goal is to study how the notion of epiphany may reveal something of the character of the author.

Myths, Patient Stories and Dental Anxiety

 Jan-Are Kolset Johnsen
UiT The Arctic University of Norway
Department of Clinical Dentistry, Faculty of Health Sciences

Unfortunately, many people have negative experiences and expectations related to dental treatment, mostly due to having one or more negative experiences where they have experienced treatment as painful and felt that they have no control over the treatment situation. There is mounting evidence that this has led to formation of negative stereotypes and myths related to dentists and dental treatment, and that this has considerable impact on patient behaviour and decision-making since negative emotions have been shown to be more effective in influencing behaviour than positive emotions. For some individuals, experiences of dental treatment might have constituted actual psychological trauma with grave health consequences. Many survivors of childhood abuse or violence also have difficulties in receiving dental care. This presentation will give insight into a few of these patient stories and discuss how these impact the use of dental health services today, and what can be done to alleviate the situation.