'A Story of Being Invisible': A Single Case Study on the Significance of Being Recognised When Needing Acute Healthcare in the Early COVID-19 Pandemic.

Severe illness is often an existential threat that triggers emotions like fear, stress, and anxiousness. Such emotions can affect ill patients' encounters with healthcare personnel. We present a single case study of an older woman who contracted COVID-19 and her challenge to be recognised by healthcare personnel in the early pandemic. Storytelling is vital to understand how patients can create meaning in illness as it gives them the opportunity to reshape and restore their past and to project a future. We used Arthur Frank's dialogical narrative analysis to explore how one patient experienced her encounters with healthcare personnel. Although she felt very ill from COVID-19, she experienced being almost invisible and not being believed by healthcare personnel in a system marked by high stress levels and uncertainty. Despite rejections and illness, she managed to mobilise her resources, even though she depended on significant others. Her story brings forward altered self-understanding and growth. The importance of facilitating dialogical settings for healthcare professionals through patient storytelling also contributes to a broader societal understanding of illness beyond a biological perspective.

Nobody Dies Alone in the Electronic Patient Record-A Qualitative Analysis of the Textual Practices of Documenting Dying and Death.

In this study, we analyse the electronic patient record (EPR) as a genre and investigate how a death is documented as part of the EPR, that is, what kind of textual practices can be found, and how they can be understood based on extracts from 42 EPRs from medical wards in Norwegian hospitals. Following from our analysis, we see four distinct patterns in the documentation of patient death: a) registering the bare minimum of information, b) registering a body stopped working, c) documenting dying quietly and placing it in peaceful surroundings, and d) highlighting the accompanied death. The textual practices of documenting the transition to death in the EPR make death appear manageable and sanitised, depicting death as either uneventful or good. While the EPR genre is steeped in biomedical language, other discourses relating to death can be seen as ways to accommodate the ideal of a dignified death.

The poetics of vulnerability: creative writing among young adults in treatment for psychosis in light of Ricoeur's and Kristeva's philosophy of language and subjectivity.

There is a growing interest in the application of creative writing in the treatment of mental illness. Nonpharmacological approaches have shown that access to poetic, creative language can allow for the verbalisation of illness experiences, as well as for self-expressions that can include other facets of the subject outside of the disease. In particular, creative writing in a safe group context has proven to be of particular importance. In this article, we present a pilot on a creative writing group for young adults in treatment for psychosis. We set the texts and experiences from the writing group in dialogue with Paul Ricoeur's and Julia Kristeva's philosophies on poetic language as meaning making and part of subject formation. The focus is on language as materiality and potentiality and on the patient's inherent linguistic resources as founded in a group dynamic. As a whole, the project seeks to give an increased theoretical and empirical understanding of the potentiality of language and creativity for healing experiences, participation and meaning-making processes among vulnerable people. Furthermore, a practice founded in poetic language might critically address both the general and biomedical understanding of the subject and disease.

Negotiating the turning point in the transition from curative to palliative treatment: a linguistic analysis of medical records of dying patients.

BACKGROUND: Many deaths in Norway occur in medical wards organized to provide curative treatment. Still, medical departments are obliged to meet the needs of patients at the end of life. Here, we analyse the electronic patient record regarding documentation of the transition from curative to palliative care (i.e. the 'turning point'). Considering the consequences of these decisions for patients, they have received surprisingly little attention from researchers. This study aims to investigate how the patient record denotes reasons for the shift from curative treatment to palliation and how texts involve voices of the patient and their families. METHODS: The study comprised excerpts from electronic patient records retrieved from medical wards in three urban hospitals in Norway. We executed a retrospective analysis of anonymized extracts from 16 electronic patient records, searching for documentation on the transition from curative to palliative care. RESULTS: In the development of the turning point, the texts usually shift from statements about the patient's clinical status and technical findings to displaying uncertainty and openness to negotiation with different textual voices. This shift may represent a need to align or harmonize the attitudes of colleagues, family, and patient towards the turning-point decision. The patient's voice is mostly absent or reported only briefly when, in their notes, nurses gave an account of the patient's opinion. None of the physicians' notes provided a detailed account of patient attitudes, wishes, and experiences. CONCLUSION: In this article, we have analysed textual representations of patient transitions from curative to end-of-life care. The 'reality' behind the text has not been our concern. As the only documentation left, the patient record is an adequate basis for considering how patients are estimated and cared for in their last days of life.

Queer narratives and minority stress: Stories from lesbian, gay and bisexual individuals in Norway.

AIMS: This study aims to explore how minority stress related to sexual orientation is reflected in narratives from lesbian, gay and bisexual (LGB) individuals in Norway, with an impact for national public health policy. METHODS: Arthur Frank's dialogical narrative analysis was applied to personal stories from 65 persons self-referring to different categories of queer identities, submitted online anonymously to a Norwegian national archive for queer history. A purposive sample of three different stories were selected due to their capacity to illuminate how various aspects of minority stress are narrated in diverse interplays between individual voices and resources, and cultural scripts and societal influences. RESULTS: Our analysis highlighted how stories may offer significant glimpses into the dynamic and complex fashioning of sexual identities, giving precious clues to the vulnerabilities and strengths of the narrator. Contemporary queer narratives from Norway reflect meaning-making related to sexual orientation that are influenced by, and expand upon, the classical scripts dominated by tragedy and tristesse, personal progress or simply no particular tension. LGB individuals of different ages and backgrounds had experienced aspects of minority stress related to their sexual orientation, with a substantial impact on identity, even when significant others were encouraging. CONCLUSIONS: The stories indicate that positive proximal processes, such as personal resilience and sympathetic environments, can support mental health and counteract negative effects of distal processes contributing to minority stress, such as heteronormativity and subtle microaggression. Public health strategies addressing attitudes to sexual orientation among the general population may contribute to diverse affirmative cultural scripts about queer lives, thereby enhancing queer mental health.

Creative writing as a means to recover from early psychosis- Experiences from a group intervention.

BACKGROUND: In this paper, we explore the subjective experiences of a group intervention in creative writing (CW) for young adults being treated for psychosis. METHOD: A qualitative and exploratory design was applied. Five out of eight patients who were offered a course in CW with two-hour weekly sessions for 12 weeks took part in this study. The five participants who followed through were interviewed after project termination. Systematic text condensation was applied to the transcribed interviews. RESULTS: The analysis revealed three overarching themes: a) the group was valued as a creative community, b) there was safety in the structured yet flexible framing of the course, c) the participants experienced creative freedom that enabled a feeling of mastery. CONCLUSION: CW was well conceived. The feelings of connectedness and mastery were prominent. The participants experienced growth on several levels. Our findings support previous work on arts therapy as a means to recovery.

Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome.

BACKGROUND: The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover. PURPOSE: This study's purpose is to provide insight into people's experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible. METHODS: Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants' experiences and understandings. We present the result through one participant's story. RESULTS: The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed. DISCUSSION: We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.

An intimate connection: Exploring the visual art experiences of persons with dementia.

The purpose of this study is to describe and discuss the art experience of persons with dementia taking part in guided museum tours at a Norwegian art museum. The analysis is based on semi-structured open-ended interviews with participants and researcher field notes. The results demonstrate the capacity and willingness of persons with dementia to reach out and connect on a personal level with the artworks. We identified four experiential dimensions: (1) a new way of seeing, (2) being lifted out of everyday life, (3) activating emotional and bodily responses and (4) connecting art and life. Our findings draw attention to the existential dimensions of the art experience and show that dementia-friendly programmes can offer individuals with dementia a way to stay connected both to themselves and to the wider community through active participation in a cultural discourse. This is the first research study conducted in this emerging field in a Norwegian context.

A complex reminding: The ethics of poetry writing in dementia care.

Interest in the potential benefits of poetry writing in dementia care has been increasing. Various practical projects, as well as research articles, have highlighted how poetry can acknowledge the words of persons with dementia, and increase well-being. In this article, the authors present a poetry writing project in dementia care in Norway, and argue for how poetry as a genre involves lyrical as well as ethical aspects. The aim of this article is to show how linguistic and ethical sensibility can illuminate the poetic possibilities of the everyday language of persons with dementia. Through a close reading of selected poems from the poetry writing project, the authors show how poetry writing can give an increased understanding of the resources in the everyday language of persons living with dementia. Poetry can open up alternative forms of expression and agency, and thereby support the narrative citizenship of persons with dementia.

Patients' illness narratives-From being healthy to living with incurable cancer: Encounters with doctors through the disease trajectory.

BACKGROUND: Narrative medicine emphasizes how stories can increase the understanding of patients' experiences and give important insights into how patients interpret and strive to make meaning in the situation they find themselves in. AIM: The aim of this study was to gain insight into the illness narratives of cancer patients, from the day they suspected that something was wrong until living with incurable cancer. METHODS AND RESULTS: Six men and seven women, aged 47 to 79 years, diagnosed with metastatic cancer and undergoing chemotherapy with life-prolonging intent in an oncology outpatient clinic, were asked to tell their illness stories as freely as possible, without guiding questions. Stories were tape recorded, transcribed, and analyzed by a thematic narrative analysis. Encounters with doctors through the disease trajectory were highlighted by all narrators. Several informants described poor communication and consequences in the form of "doctors delay" and substandard psychosocial care. Continuity in follow-up and the physician's ability or inability to break bad news and adapt information to the patient's wishes and preferences were particularly emphasized. CONCLUSION: A key finding was the importance of the doctor's role throughout the whole trajectory. A good doctor-patient relationship was characterized by continuity of care in follow-up, and trust acquired over time, based on the physician's thorough medical knowledge combined with sensitive communication and empathy.

Finding ways to carry on: stories of vulnerability in chronic illness.

Purpose: In this study, we explore the lived experiences of chronic illness in four groups of patients; children with asthma, adolescents with diabetes, young adults with depression, and adult patients with chronic, obstructive pulmonary disease (COPD). Persons living with chronic illness are often designated as vulnerable. This study builds on the assumption that being vulnerable belongs to being human, and that vulnerability also might entail strength and possibilities for growth. Methods: A narrative analysis was undertaken to illuminate how experiences of vulnerability were narrated across the four patient groups, presenting four individual stories, one from each of the patient groups. Results/conclusion: The stories illuminate how living with a chronic illness implies differing capabilities and capacities dependent on the specific condition. At the same time the stories point to how various abilities and challenges in living with chronic illness can be alleviated or seen as resources. Considered together, the stories underscore how ´finding ways to carry on´ in chronic illness requires interpretational work. By calling upon resources among significant others, in the surroundings and in oneself, the narrator can find ways of interpreting living with chronic illness that might open towards a hopeful future.

Narratives of nostalgia in the face of death: The importance of lighter stories of the past in palliative care.

My research on the stories of palliative care patients emphasizes the heterogeneity of the types of stories they tell, including stories of illness, of everyday life, of the future, and of the past (Synnes, 2012). This article pays special attention to the prevalence of stories of past experiences in which the past is portrayed through idyllic and nostalgic interpretation. In contrast to most research on illness narratives and narrative gerontology that is preoccupied with stories of change, these stories of nostalgia are characterized by a plot where nothing in particular happens. However, this may be the primary purpose for the storytellers in their particular situation of illness and imminent death. The main purpose of nostalgia is precisely to ensure the continuity of identity in the face of adversity (Davis, 1979). In this article, I argue that these stories of nostalgia are vital aspects of maintaining the continuity of the self, or a narrative identity, when much else in life is characterized by discontinuity and uncertainty. Thus, stories of nostalgia should not be dismissed as escapism but valued and listened to as important aspects of narrative care among palliative care patients, and as a way of preserving the sense of a narrative identity.

The loss of a mother and dealing with genetic cancer risk: women who have undergone prophylactic removal of the ovaries.

PURPOSE: The purpose of this article is to highlight some new findings from a qualitative study that have not been previously considered. METHOD: The research was based on a qualitative phenomenological method. Data were collected by semi-structured individual interviews. A purposeful sample was recruited from West Norway of 14 women with a possible risk of developing breast and ovarian cancer. Data collection took place at least one year after prophylactic removal of the ovaries. Data from the study was analyzed according to the phenomenological method of Amedeo Giorgi. KEY FINDINGS: Two themes were revealed as essential factors of the interviewed women's experiences: "the loss of a mother" and "dealing with genetic cancer risk." For the most part, these two themes also appeared to be interrelated. When a mother died of ovarian cancer while her daughter was a child or a young woman, this often led to her daughter's strong desire to find an explanation for her mother's death, as well as to her efforts to undergo genetic testing and surgery to prevent cancer in her family in the future. CONCLUSION: The study indicates that women's experiences in families at risk of hereditary cancer are closely related to an understanding of their life stories, particularly their "loss of a mother," and how this influences how they deal with genetic cancer risk. Health care workers can thus help patients identify connections and establish coherence through the act of storytelling, by listening to their illness experiences as part of their life stories.

Understanding cancer patients' reflections on good nursing care in light of Antonovsky's theory.

PURPOSE: Data from an empirical study about cancer patients' perception of good caring are analysed in the light of Antonovsky's theory. The aim was to reflect on whether and how health personnel by giving good care, can function as vital resources at cancer patients disposal in activating their General Resistance Resources (GRRs) in a stressful life situation, and by that contribute to promotion and maintenance of their sense of coherence. METHODS AND SAMPLE: A hermeneutical approach was chosen for analysing the data. The informants were cancer patients in an oncology ward in a regional hospital in Norway. Twenty patients were interviewed, ten women and ten men. The patients had various cancer diagnoses at different stages and had different prognoses. KEY FINDINGS: The findings indicate that most of the patients succeeded in activating their GRRs in dealing with the stressor. Nurses, doctors, family and friends can be seen to function as vital resources at their disposal when needed. Most likely good caring supported the patient's promotion and maintenance of the components of meaningfulness, comprehensibility and manageability which form the concept sense of coherence (SOC). CONCLUSION: Health personnel can support the patients' meaningfulness by listening to the patients' stories about what still gives them meaning in life and their comprehensibility by giving good information. Alleviation of physical suffering may promote and maintain their manageability. Because all three components are intertwined, it is important to focus on all of them when caring for cancer patients.