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Journal articles on the topic 'Illness narratives'

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Author: Grafiati

Published: 4 June 2021

Last updated: 19 February 2023

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1

Hinson, Katrina, and Ben Sword. "Illness Narratives and Facebook: Living Illness Well." Humanities 8, no. 2 (May 30, 2019): 106. http://dx.doi.org/10.3390/h8020106.

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Earlier scholarship provides important insights into the relationship of individual stories and narratives. Interactions with healthcare professionals and the healthcare system can often subsume the individual’s authority/agency. The patient’s narrative often gets lost in the elaborate web of doctor visits, referrals, medical records, case notes, etc. Online spaces such as Facebook, however, provide individuals with a platform through which they can understand, craft, and communicate their own personal illness narratives. Realizing this, this paper examines how the narratives of illness shared in illness-related Facebook groups help individuals make sense out of the disruption caused by their personal experience while residing in the ‘kingdom of the ill.’ To observe the construction and communication of these narratives, the researchers observed the activity of an online pulmonary embolism and deep-vein thrombosis survivor support group for one year. In this online space, individuals gained agency and authority in the construction of their own illness narratives. The findings of the research demonstrated both the importance of narrative in an individual’s health/illness journey as well as the need to further explore avenues that establish and bolster patient agency within the medical system.

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2

Joshi, Pragya Pandey, Ankur Joshi, Saket Kale, Jeewan Singh Meena, and Nivedita Kale. "Illness Narratives." International Journal of User-Driven Healthcare 3, no. 3 (July 2013): 65–73. http://dx.doi.org/10.4018/ijudh.2013070105.

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An illness narrative is constructed when a person engages with both internal dialogues with himself and in interactions with the others during their journey; these can be transformed into dramatic script for social and self –beneficence. This paper explores whether process-centered creative drama could be the optimum modality for this dramatization. It also suggests that this process can be captured to assist the ill person, their care-givers, and others in understanding the dynamic process of illness.

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3

Arduser, Lora. "Agency in illness narratives." Narrative Inquiry 24, no. 1 (October 28, 2014): 1–27. http://dx.doi.org/10.1075/ni.24.1.01ard.

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In this essay, I argue that structural approaches to narrative articulate identity and agency as internal constructs. As such, these analyses neglect the roles of institutional and social factors. A pluralistic analysis of these illness narratives, such as the one offered in this essay, can help narrative scholars better understand how these forces interact with the individual experiences of people living with illness in supporting and constraining agency.

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4

NAKAMURA, Hideyo. "“Illness Narratives” and “Healing Narratives”." Annual review of sociology 2006, no. 19 (2006): 165–76. http://dx.doi.org/10.5690/kantoh.2006.165.

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5

Daniel, Meklit. "“A good conversation is better than a good bed”: How Migration Impacts Meanings of Health among Chronically Ill Ethiopian Immigrant Women." Journal for Undergraduate Ethnography 11, no. 3 (November 28, 2021): 66–83. http://dx.doi.org/10.15273/jue.v11i3.11244.

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Narratives reinstate meaning to the body and mind, especially after major life events like migration and illness. To better understand the interplay between migration status and narrative practices, I examine the functions and meanings of illness narratives among three Ethiopian immigrant women living with chronic illnesses. I investigate how these accounts impact the ways in which my interviewees identify and understand themselves in relation to their illnesses. The core of this article is divided into three sections—Stigma, Frustration, and Faith—each conveying my interlocutors’ migration and chronic illness experiences as well as the liberating and constraining effects of storytelling. Collectively, these themes highlight the agentive aspects of illness narratives that help chronically ill Ethiopian immigrant women assert control over their bodies and identities as they strive toward bettering their health.

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6

Lee, Liz, and Susie Freeman. "Pharmacopoeia: Illness narratives." British Journal of Clinical Pharmacology 87, no. 8 (June 28, 2021): 3069–74. http://dx.doi.org/10.1111/bcp.14891.

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7

Kleinman, Arthur. "The Illness Narratives." Academic Medicine 92, no. 10 (October 2017): 1406. http://dx.doi.org/10.1097/acm.0000000000001864.

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8

Starr, O. D. "The Illness Narratives." BMJ 344, jan11 1 (January 11, 2012): e251-e251. http://dx.doi.org/10.1136/bmj.e251.

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9

Atkinson, Paul. "Illness Narratives Revisited: The Failure of Narrative Reductionism." Sociological Research Online 14, no. 5 (November 2009): 196–205. http://dx.doi.org/10.5153/sro.2030.

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The argument uses the proliferating research literature on ‘illness narratives’ to make a more general analytic point about the proper treatment of narratives and life-stories by social scientists. It is suggested that, notwithstanding earlier commentary and criticism, and despite the sophistication of authors such as Mishler, too many narrative-based studies fall far short of a thoroughly analytic approach to such spoken actions. Too often narratives are celebrated as the means for analysts to gain access to personal experience, to the subjective or private aspects of illness. It is argued that we still need analytic strategies that treat illness (or any) narratives as speech acts, based on socially shared resources.

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10

Kovács, Asztrik, Virág Mezőfi, V. Anna Gyarmathy, and József Rácz. "Rehabilitation From Addiction and Chronic Illnesses: A Comparative Analysis of the Narratives of Hungarian Patients." Research and Theory for Nursing Practice 34, no. 1 (January 1, 2020): 65–80. http://dx.doi.org/10.1891/1541-6577.34.1.65.

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BackgroundIn Hungary the psychological care provided during the rehabilitation of patients with chronic illnesses is insufficient. Patients with addiction, on the other hand, appear to make more use of psychological services. Narratives of patients recovering from addiction and patients with various chronic illnesses were examined in order to gain a better understanding of psychological phenomena during rehabilitation.MethodsSemi-structured interviews were carried out. Narrative and thematic analysis was used in order to determine the structure and characteristics of patients' narratives.ResultsThe narratives of patients recovering from addiction were found to be more structured and uniform; they identified with their illness and played an active role in their recovery. Patients with a chronic illness mainly recounted passive events and physical difficulties. Stigmatization was mentioned by both groups.Implications for practiceThe level of stigmatization experienced by patients with a chronic illness may be one of the reasons why they use healthcare services more frequently than patients with an addiction. The authors believe that teaching patients to provide good narratives about suffering from and recovering from chronic illnesses may aid them in the rehabilitation process. An adaptive mixture of different illnesses and addiction narratives might be beneficial in the recovery process of various patient groups.

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11

Rimmon-Kenan, Shlomith. "What Can Narrative Theory Learn from Illness Narratives?" Literature and Medicine 25, no. 2 (2006): 241–54. http://dx.doi.org/10.1353/lm.2007.0019.

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12

Baldwin, Clive. "Narrative, Ethics and People with Severe Mental Illness." Australian & New Zealand Journal of Psychiatry 39, no. 11-12 (November 2005): 1022–29. http://dx.doi.org/10.1080/j.1440-1614.2005.01721.x.

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Starting from the premise that people are essentially narrative beings, I argue that the onset of severe mental illness compromises the narrative enterprise of being able to construct one's Self and one's relationships in meaningful and coherent ways. This is due to both the curtailment of opportunities for narrative engagement and the dispossession of those whose narratives do not conform to the current conceptualization of narrative and narrativity. In these circumstances, supporting the narrative enterprise is an ethical endeavour that requires that we examine not only which narratives we construct, but also how we construct them. This requires a re-thinking of what might constitute narrative and how we might facilitate or enhance the narrativity of people with severe mental illness. Following this, I suggest four means to support the narrativity of people with severe mental illness: through maintaining narrative continuity, maintaining narrative agency, countering master narratives and attention to small stories.

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13

Shree P, Kavya. "Illness As Narrative Strategy: An Account of Illness Narratives and Popular Fiction." Bioscience Biotechnology Research Communications 14, no. 8 (June 25, 2021): 178–83. http://dx.doi.org/10.21786/bbrc/14.8.41.

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14

Langdon, E. Jean Matteson. "Shamanism, narratives and the structuring of illness." Horizontes Antropológicos 3, no. 6 (October 1997): 187–214. http://dx.doi.org/10.1590/s0104-71831997000200010.

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Abstract: This work examines how the narrative tradition of the Siona Indians regiments the illness experience into a structure of relevance and consequentiality as well as how it provides a model for the generation of persona/narratives. A text that can be considered a prototypical model of an illness narrative is examined. This narrative, as others of its kind, furnishes a model for interpretation and action in ongoing illness situations that defy routine and commonly known therapies. This is done in two ways. One is through narrative structure that establishes a set of certain questions and expectations as to the consequentiality of events: how they evolve, the nature of motives behind misfortunes, and strategies for resolution. The second is through provision of codes or signs that aid in the interpretation of hidden events. In this sense, the illness narratives are not predictive, but indicate what is relevant for interpreting illness and organizing a plan of action.

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15

Bock, S. "Staying Positive: Women's illness narratives and the stigmatized vernacular." Health, Culture and Society 5, no. 1 (November 15, 2013): 150–66. http://dx.doi.org/10.5195/hcs.2013.125.

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This article uses the stigmatized vernacular (Goldstein & Shuman, 2012) as a conceptual framework for examining the public construction and reception of women’s illness narratives. I begin by making the case that personal illness narratives – a genre that works to translate the subjective illness experience to a public audience – are rich sites for exploring how discourses of veneration and repudiation can become inextricably intertwined. Discussing illustrative examples of the construction and reception of women’s illness narratives shared in contexts of breast cancer and fibromyalgia, I show how popular understandings of emotions, particularly positive emotions like happiness, play a major role in the regimes of value shaping how women’s illness experiences become tellable or untellable, and thereby valued or devalued. Integrating scholarship on illness narratives, stigma, and happiness, I aim to contribute to a richer and more multifaceted view of the illness narrative genre and the discursive contagion of stigma.

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16

Kirkegaard Thomsen, Dorthe, and Anders Bonde Jensen. "Memories and narratives about breast cancer." Narrative Inquiry 17, no. 2 (December 31, 2007): 349–70. http://dx.doi.org/10.1075/ni.17.2.10kir.

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Turning points are considered to refer to emotional and important events. The present study compared turning point memories to other memories on several ratings and investigated the association between turning points, distress and meaning. Memories may act as organising units in extended narratives, hence the study also tested whether overlap between memories and extended illness narrative was associated with a more coherent narrative. Fifteen patients with breast cancer were asked to tell a 10-minute narrative about their illness course and describe meaning in their illness. Each patient was asked to recall five memories, to state whether or not the memories were turning points, and to rate memories on both event and phenomenological variables. Lastly, the patients were asked to rate distress. The narratives were scored for coherence and the memories were scored for thematic content as well as thematic overlap with the narratives. The results showed that all participants rated the mammography as a turning point and that turning points were rated higher on both event and phenomenological variables. Patients reporting more turning points also reported more distress and not finding meaning in the illness and treatment. High degree of overlap between memories and narratives showed a trend towards an association with a more coherent narrative. The present article discusses processes, which may be involved in the interaction between memories and narratives.

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17

Kokanović, Renata, and Jacinthe Flore. "Subjectivity and illness narratives." Subjectivity 10, no. 4 (November 10, 2017): 329–39. http://dx.doi.org/10.1057/s41286-017-0038-6.

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18

Wilson, Amy, Chris Millard, and Ian Sabroe. "Physician narratives of illness." Lancet 394, no. 10192 (July 2019): 20–21. http://dx.doi.org/10.1016/s0140-6736(19)31501-6.

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19

Figueras Bates, Carolina. "Evidentiality in illness narratives." Pragmatics and Society 9, no. 3 (June 28, 2018): 356–80. http://dx.doi.org/10.1075/ps.16038.fig.

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Abstract Narratives of severe mental illness can be regarded as the discursive efforts of a healthy self to restore a sense of selfhood disrupted by the illness. Focusing on a sample of 87 unsolicited online illness narratives of eating disorders in Spanish, this article explores how narrators deployed evidential constructions introduced by the perception verb “ver” (to see) to manage identity in the autobiographical telling. The analysis revealed that “ver” indexed information as coming from different sources (perception, mental states, inference). This evidential material was discursively evaluated (via the adoption of a specific epistemic stance) and applied to construe conflicting versions of self in the eating disorder narratives. Resorting to the evidential marking, narrators could rhetorically negotiate the transition from their perceptual self, created during the illness, to their cognitive self, elaborated in the recovery.

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20

Yelle, Maria T., Patricia E. Stevens, and Dorothy M. Lanuza. "Waiting Narratives of Lung Transplant Candidates." Nursing Research and Practice 2013 (2013): 1–10. http://dx.doi.org/10.1155/2013/794698.

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Before 2005, time accrued on the lung transplant waiting list counted towards who was next in line for a donor lung. Then in 2005 the lung allocation scoring system was implemented, which meant the higher the illness severity scores, the higher the priority on the transplant list. Little is known of the lung transplant candidates who were listed before 2005 and were caught in the transition when the lung allocation scoring system was implemented. A narrative analysis was conducted to explore the illness narratives of seven lung transplant candidates between 2006 and 2007. Arthur Kleinman’s concept of illness narratives was used as a conceptual framework for this study to give voice to the illness narratives of lung transplant candidates. Results of this study illustrate that lung transplant candidates expressed a need to tell their personal story of waiting and to be heard. Recommendation from this study calls for healthcare providers to create the time to enable illness narratives of the suffering of waiting to be told. Narrative skills of listening to stories of emotional suffering would enhance how healthcare providers could attend to patients’ stories and hear what is most meaningful in their lives.

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21

Knepper, Karla N. K., and Michael I. Arrington. "Parents’ Narratives in an Online PHPV Forum: Toward a Typology of Caregiver Illness Narratives." Illness, Crisis & Loss 26, no. 4 (September 7, 2016): 316–29. http://dx.doi.org/10.1177/1054137316667594.

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The authors analyzed messages from an online support group for parents of children with Persistent Hyperplastic Primary Vitreous. This eye disorder, while not life-threatening, affects children’s eyesight and can impinge on the lives of parents and caretakers. The literature review examines Frank’s typology of illness narratives, prompting the question of whether Frank’s work is applicable to the narrative accounts of people who do not experience illness firsthand. Analysis of support group discourse not only confirms prior studies of illness narratives but also suggests that current typologies do not fully address the accounts of those who witness and are affected by the illness of another.

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22

Kokanović, Renata, and Meredith Stone. "Listening to what cannot be said: Broken narratives and the lived body." Arts and Humanities in Higher Education 17, no. 1 (September 27, 2017): 20–31. http://dx.doi.org/10.1177/1474022217732871.

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The core of this special issue of Arts and Humanities in Higher Education emerged from the Broken Narratives and the Lived Body conference held in 2016. The ‘Broken Narrative’ essays included in this issue open up a critical space for understanding and theorising illness narratives that defy a conventional cognitive ordering of the self as a bounded spatial and temporal entity. Here, we discuss how narratives might be ‘broken’ by discourse, trauma, ‘ill’ lived bodies and experiences that exceed linguistic representation. We trouble distinctions between coherent and incoherent narratives, attending to what gaps, silences and ‘nonsenses’ can convey about embodied illness experiences. Ultimately, we suggest that ‘breaks’ are in fact a continuation of embodied narration. This is shown in the ‘Art and Trauma’ forum of essays, which reveal how narrative silences can ‘infect’ other embodied subjects and be transformed, achieving musical or visual representation that allow us to apprehend the ‘constitutive outside’ of narratives of illness or trauma.

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23

Weingarten, Richard, and Maria E. Restrepo-Toro. "Recovery narratives: 'see how far i've come'." Cadernos Saúde Coletiva 20, no. 4 (2012): 448–52. http://dx.doi.org/10.1590/s1414-462x2012000400007.

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As the paradigm shift towards a recovery-oriented mental health system becomes more prominent, individuals with lived experience of mental illness will continue to write and speak their narratives of mental illness and recovery. This article discusses the social reality of people with mental illness: how they are stigmatized by the media and how competing narratives within the mental health system afflict people with this disability. It also discusses the empowering process of constructing a narrative that enables the narrator/speaker to find meaning in her/his experience while putting a realistic 'face' on mental illness and recovery for the general public. It further describes how telling a narrative to diverse audiences, including a college class of 'people in recovery' enhances the author's personal recovery by giving his life new meaning and purpose.

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Giani, Umberto, Carmine Garzillo, Brankica Pavic, and Maria Piscitelli. "Illness Narrative Complexity in Right and Left-Hemisphere Lesions." International Journal of Rough Sets and Data Analysis 3, no. 1 (January 2016): 36–54. http://dx.doi.org/10.4018/ijrsda.2016010103.

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Human relations are mainly based upon the exchange of narratives. So, it seems reasonable to study the effects of cerebral injuries upon this essential function of human thinking, and in particualr the differences of the structure of narratives in patients affected by left and right cerebral lesions. In this paper the transcripts of audio-taped illness narratives of six enrolled patients (three with right-hemisphere lesions and three with left ones, matched by age and sex) were analyzed by means of two different methods: Semantic Networks Analysis and Latent Dirichlet Allocation. These methods allowed to calculate several numerical indicators of the complexity of the narratives. Results showed that right hemisphere lesions entail a reduction of the narrative complexity, whereas the opposite occurs in patients with Left Hemisphere Lesion.

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Sparks, Jacqueline. "Counter-Narratives of “Mental Illness”." Ethical Human Psychology and Psychiatry 20, no. 2 (August 1, 2018): 71–72. http://dx.doi.org/10.1891/1559-4343.20.2.71.

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26

Monticelli, Daniele. "Illness: Narratives, Imagery, and Politics." Folklore: Electronic Journal of Folklore 83 (August 2021): 235–50. http://dx.doi.org/10.7592/fejf2021.83.monticelli.

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The article uses the review of a seminar, an exhibition, and a graduate conference, which took place at Tallinn University in the 2020–2021 academic year, as an occasion to reflect on the different ways in which illness has been represented in literature, the arts, and film across the history of Western culture. The specific focus of the article is on the theoretical contribution of the humanities to a more complex and adequate understanding of the phenomenon of illness. The study of illness narratives reveals different patterns and strategies of constructing the illness experience into a coherent and meaningful story, but also the resistance that the disruptive impact of illness on our everyday lives poses to narrativisation. The complex historical imagery which endows the biological fact of being sick with additional cultural and social meaning has also to be critically investigated in the humanities and social sciences. Metaphors about illness and the use of illness as a socio-political metaphor have often had a nefarious impact on sick people as well as entire social groups and communities. This is why the article also considers illness in its relations with politics and power and describes various attempts to empower sick people in their relations with medical institutions and their social environment. The article ends with a review of the “Illness: Narratives, Imagery, Politics” graduate conference (27–28 January 2021), which is a good illustration of the many literary and artistic works and of the plurality of methods that can be used in the study of the illness phenomenon from a humanities perspective.

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Rushforth, Alex, Emma Ladds, Sietse Wieringa, Sharon Taylor, Laiba Husain, and Trisha Greenhalgh. "Long Covid – The illness narratives." Social Science & Medicine 286 (October 2021): 114326. http://dx.doi.org/10.1016/j.socscimed.2021.114326.

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Kidd, Ian James. "Exemplars, ethics, and illness narratives." Theoretical Medicine and Bioethics 38, no. 4 (July 13, 2017): 323–34. http://dx.doi.org/10.1007/s11017-017-9411-2.

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29

Bury, Mike. "Illness narratives: fact or fiction?" Sociology of Health & Illness 23, no. 3 (May 2001): 263–85. http://dx.doi.org/10.1111/1467-9566.00252.

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Choi, Hoon. "It’s Time: Narratives of Illness, Aging, and Death: Narratives of Illness, Aging, and Death." Journal of the Society of Christian Ethics 41, no. 1 (2021): 175–76. http://dx.doi.org/10.5840/jsce20214113.

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31

Koutri, Ifigeneia, and Evrinomy Avdi. "The suspended self: Liminality in breast cancer narratives and implications for counselling." European Journal of Counselling Psychology 5, no. 1 (December 23, 2016): 78–96. http://dx.doi.org/10.5964/ejcop.v5i1.92.

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In the field of chronic and serious illness, meaning-making with regards to the illness experience has been shown to be a core process for patients. This study focuses on women's narratives of their experiences of living with breast cancer. Within the framework of narrative psychology, illness narratives are considered to provide the main means through which patients make sense of their illness experience and construct its place in their life story. In this paper, we present findings from a narrative study that aimed to explore the different meanings that breast cancer holds for Greek women. In the broader study, four basic narrative types about breast cancer emerged from the analysis. In this paper, we focus on one of these narrative types, in which illness is constructed as an entrance into a state of liminality and where the women's sense of self seems to be “suspended”. The core features of this narrative type are described and arguments are developed regarding its usefulness. We argue that this is a narrative type that deserves further attention, particularly as it seems to reflect a socially non-preferred storyline, which might result in these women's stories being sidestepped or silenced. The implications of this narrative type for healthcare and counselling in cancer care are discussed.

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Niemeijer, Alistair, and Merel Visse. "Challenging Standard Concepts of ‘Humane’ Care through Relational Auto-Ethnography." Social Inclusion 4, no. 4 (November 10, 2016): 168–75. http://dx.doi.org/10.17645/si.v4i4.704.

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What is deemed ‘good’ or ‘humane’ care often seems to be underpinned by a standard ideal of an able-bodied, autonomous human being, which not only underlies those ‘social and professional structures within which narratives and decisions regarding various impairments are held’ (Ho, 2008), but also co-shapes these structures. This paper aims to explore how a relational form of auto-ethnography can promote good care. Rather than being based on and focused toward this standard ideal, it challenges ‘humanity’ by showing how illness narratives, public discourse, and policy are framed by ethical questions. It illustrates how normative ideas dictate policy and public discourse. It critically questions this constitutive power by shifting attention to the lived experiences of people with chronic illness and disability. By highlighting and reflecting together on the first author’s life with a chronic illness and his son’s disability, and thereby framing the narrative, it will be argued that, in order to improve care practices, personal illness and disability narratives and the way they interlock with public narrative and auto-ethnographic methodologies should be investigated.

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Silistraru, Ioana. "Narrative Medicine – the methodology of doctor-patient communication analysis." Social Change Review 15, no. 1-2 (December 1, 2017): 105–28. http://dx.doi.org/10.1515/scr-2017-0005.

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AbstractThe present paper aims at presenting a non-exhaustive list of methodology instruments for narrative analysis in medical communication. Patient narratives became of more and more importance while evidence-based medicine has created a gap between patients, their illness and their doctors. While being investigated through high-technology instruments used in medicine, the patient vanishes behind the computer screen where his body is analysed based on the biomedical factors. Narrative medicine is defined by one of its founders as the interaction between a health practitioner who doesn’t simply look at diseases, but treats the person who’s suffering from an illness by listening closely to his story (Charon 2001). Therefore, as mentioned by Rita Charon in her works, the doctor-patient interactions are measured considering the effectiveness of medical care. The patient is empowered with medical knowledge related to his illness, transposed into an accessible language. On the other side of the communication spectrum, the doctor reconnects with his patient, manifesting interest on how the patient’s life is affected by illness, not only on how it can be effectively treated. ‘Now, in recent years medical narrative is changing—from the stories about patients and their illnesses, patient narratives and the unfolding and interwoven story between healthcare professionals and patients are both gaining momentum, leading to the creation or defining of narrative-based medicine (NBM).’ (Kalitzkus and Matthiessen 2009). Narrative based medicine is presented to counteract the pitfalls of evidence-based medicine (EBM). NBM can foster a better care while taking into account the patient’s story on the way illness is affecting the quality of his everyday life. The final objective of effective medical care is to alleviate, if not to dismiss completely the illness and the suffering of the patients.

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Haydon, Gunilla, and Pamela van der Riet. "Narrative inquiry: A relational research methodology suitable to explore narratives of health and illness." Nordic Journal of Nursing Research 37, no. 2 (October 21, 2016): 85–89. http://dx.doi.org/10.1177/2057158516675217.

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This paper proposes the need for further qualitative research to gain valuable insight into individuals’ experiences of health and illness and the suitability of narrative inquiry as a methodology to investigate these experiences. It is essential to increase qualitative knowledge of individuals’ experiences of illness in order to improve and personalise their care. Narrative inquiry aims to understand knowledge gained from the individual’s narrative of their experiences. Narrative inquiry explores experiences through the dimensions of temporality, sociality and spatiality. The aspect between these dimensions provides an exploratory structure for narratives surrounding health and illness: temporality – when did the illness begin, how will it influence the future; sociality – cultural and personal influences on views of illness; spatiality – surroundings, such as hospitals, and their influence on the health–illness perspective. Narrative inquiry not only provides a deep understanding of the investigated phenomena, it is also provides a rich vibrant narrative presentation of findings for the reader and user of research.

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35

Mæhre, Kjersti Sunde. "Fortellingens betydning for å fremme livsmotet i møte med alvorlig sykdom." Nordisk tidsskrift for helseforskning 15, no. 2 (November 14, 2019): 16. http://dx.doi.org/10.7557/14.4605.

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The importance of the story to promote hope and life courage in the face of serious illnessIn connection with my PhD (Mæhre, 2017), I conducted qualitative interviews with five critically ill patients in an enhanced ward of a nursing home, based on the Coordination Reform. The purpose of the interviews was to increase understanding of patient experiences of the ward, and their perceived challenges and needs for assistance. The research method was a hermeneutic-phenomenological approach. The essay is based on one of the patient interviews, which has been rewritten as a narrative. This narrative emphasizes how the patient has fought against her illness, and her need to be seen as herself as a person and not understood in terms of a diagnosis. The illness narrative becomes part of her life story. The article highlights opportunities for narratives in the face of serious illness. The narrative reveals how a changed life situation, despite severe illness, can add courage and joy to life, but also how it can lead to hopelessness, doubt, and uncertainty.

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36

Alshammari, Shahd. "Life Writing by Kuwaiti Women: Voice and Agency." IAFOR Journal of Cultural Studies 7, no. 1 (September 16, 2022): 53–63. http://dx.doi.org/10.22492/ijcs.7.1.04.

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Life narratives are rare in the Gulf region due to many issues. Kuwait women’s writing about their lives, bodies, illnesses, and disabilities is almost unheard of. This article considers two texts by contemporary Kuwaiti women and situates their illness narratives within Kuwait’s social context. By writing about their illness and disability, the authors re-claim their voice and agency, writing their silenced bodies as Helene Cixous urges women to write through Écriture feminine. This article examines two texts from a comparative perspective, highlighting themes of disability, mental illness, and healing through writing.

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Pelaéz, C. F., and L. Caballero. "The use of McGill illness narrative interview (MINI) in fibromyalgia patients. An experience from Spain." European Psychiatry 26, S2 (March 2011): 1002. http://dx.doi.org/10.1016/s0924-9338(11)72707-9.

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IntroductionThe McGill Illnes Narrative (MINI) is a semiestructured, qualitative interview schedule, which is useful to explore individuals’ illnes narratives in sociocultural context. It has been used in first- time postmyocardial infarction patients and also in patients with hyperemesis gravidarum, but it has not yet been used in fibromyalgia.Patients and methodsA study was conducted using McGill Illness Narratives (MINI) with 20 patients who were recruited from a referral Rheumatology Service during 2009 and 2010, and met criteria of the American Association of Rheumatology for fibromyalgia syndrome (FMS) trying to explore:Narrative of illness experienceSalient prototypes related to current health problemExplanatory modelsHelp seeking and service utilizationImpact of illnessThe interviews were carried out and audiorecorded and the narratives were analyzed according to their structure and content.ResultsThe physical cause was the most common causal attribution. Most of them had been treated for different specialists, and reported problems in seeking diagnosis and help from professionals. Some patients were diagnosed by rheumatologists with celiac disease, lactose intolerance and undifferentiated spondylitis, termed “False Fibromyalgia”. Like previous research, negative emotional states were correlated with worsening pain. Many changes were related in their way of life.ConclusionsQualitative studies are essential to complement quantitative research methods and are imprescindible to understand FMS. The exploration of the explanatory models may stimulate exchange between disciplines and may give access to a popular cultural construct related to somatic conditions not yet documented in the literature.

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Hydén, Lars-Christer. "Narratives in Illness: A Methodological Note." Qualitative Sociology Review 4, no. 3 (December 30, 2008): 49–58. http://dx.doi.org/10.18778/1733-8077.4.3.04.

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As a result of the general growth in the interest in narratives different conception of what a story is and how to analyze has emerged. One especially interesting and methodological relevant difference is between the conception of narratives as textual objects and narratives as part of a storytelling event. The paper discusses the theoretical differences between these two analytical approaches to narratives. An example from my own research on Alzheimer’s patients telling stories illustrate the possibilities of using a performative and micro ethnographic approach to the study of storytelling in order to understand the functions of narratives – especially in relation to identity work. If stories not only are thought of as representations of events it becomes possible to view stories and story telling as social action: social states are both established, negotiated and changed through stories. This is especially important in the field of health and illness where diseases almost always are embedded in conversations and the telling of why and how symptoms were discovered or traumas received. For many patients and persons with especially communicative disabilities story telling is a challenge, but also an opportunity to actually master, maintain and often transform their identities.

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Sakalys, Jurate A. "The political role of illness narratives." Journal of Advanced Nursing 31, no. 6 (June 2000): 1469–75. http://dx.doi.org/10.1046/j.1365-2648.2000.01461.x.

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Ezzy, Douglas. "Illness narratives: time, hope and HIV." Social Science & Medicine 50, no. 5 (March 2000): 605–17. http://dx.doi.org/10.1016/s0277-9536(99)00306-8.

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Manabe, Masae, Kongmeng Liew, Shuntaro Yada, Shoko Wakamiya, and Eiji Aramaki. "Estimation of Psychological Distress in Japanese Youth Through Narrative Writing: Text-Based Stylometric and Sentiment Analyses." JMIR Formative Research 5, no. 8 (August 12, 2021): e29500. http://dx.doi.org/10.2196/29500.

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Background Internalizing mental illnesses associated with psychological distress are often underdetected. Text-based detection using natural language processing (NLP) methods is increasingly being used to complement conventional detection efforts. However, these approaches often rely on self-disclosure through autobiographical narratives that may not always be possible, especially in the context of the collectivistic Japanese culture. Objective We propose the use of narrative writing as an alternative resource for mental illness detection in youth. Accordingly, in this study, we investigated the textual characteristics of narratives written by youth with psychological distress; our research focuses on the detection of psychopathological tendencies in written imaginative narratives. Methods Using NLP tools such as stylometric measures and lexicon-based sentiment analysis, we examined short narratives from 52 Japanese youth (mean age 19.8 years, SD 3.1) obtained through crowdsourcing. Participants wrote a short narrative introduction to an imagined story before completing a questionnaire to quantify their tendencies toward psychological distress. Based on this score, participants were categorized into higher distress and lower distress groups. The written narratives were then analyzed using NLP tools and examined for between-group differences. Although outside the scope of this study, we also carried out a supplementary analysis of narratives written by adults using the same procedure. Results Youth demonstrating higher tendencies toward psychological distress used significantly more positive (happiness-related) words, revealing differences in valence of the narrative content. No other significant differences were observed between the high and low distress groups. Conclusions Youth with tendencies toward mental illness were found to write more positive stories that contained more happiness-related terms. These results may potentially have widespread implications on psychological distress screening on online platforms, particularly in cultures such as Japan that are not accustomed to self-disclosure. Although the mechanisms that we propose in explaining our results are speculative, we believe that this interpretation paves the way for future research in online surveillance and detection efforts.

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Mackenzie, Catriona, and Jacqui Poltera. "Narrative Integration, Fragmented Selves, and Autonomy." Hypatia 25, no. 1 (2010): 31–54. http://dx.doi.org/10.1111/j.1527-2001.2009.01083.x.

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In this paper we defend the notion of narrative identity against Galen Strawson's recent critique. With reference to Elyn Saks's memoir of her schizophrenia, we question the coherence of Strawson's conception of the Episodic self and show why the capacity for narrative integration is important for a flourishing life. We also argue that Saks's case and reflections on the therapeutic role of “illness narratives” put pressure on narrative theories that specify unduly restrictive constraints on self-constituting narratives, and clarify the need to distinguish identity from autonomy.

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Tynan, Avril. "Mind the Gap." Journal of Literary & Cultural Disability Studies 14, no. 3 (August 1, 2020): 353–69. http://dx.doi.org/10.3828/jlcds.2020.22.

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The “narrative turn” in biomedical discourses has dominated twenty-first-century medical humanities, pursuing the premise that narratives of illness, including patient and literary narratives, contribute toward our understanding of illness because they encourage us to reflect upon lived reality and even to imagine events and experiences with which we may be grossly unfamiliar (Charon et al.; Charon; Oyebode; Halpern; Altschuler). However, an emerging critical approach to the medical and health humanities challenges the assumption that narrative is incontestably and straightforwardly valuable for understanding illness. Following the work of Ahmed, Keen, Bishop, Jurecic, Whitehead and Woods, and Whitehead, the article suggests that narrative fiction may not cultivate empathy for another person, but may draw attention to the limitations of understanding another’s experience by encouraging us to look out for, and even to imagine, the multiple ways in which we experience the world differently to others. With a focus on the experience of dementia-related diseases—including Alzheimer’s disease—in B. S. Johnson’s House Mother Normal, the article shows that metafiction may not help us to empathize with others so much as it may problematize our ability to empathize in ways that are ethically valuable for an understanding of subjectivity, illness, and experience.

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Perrino, Sabina M. "Participant transposition in Senegalese oral narrative." Narrative Inquiry 15, no. 2 (December 22, 2005): 345–75. http://dx.doi.org/10.1075/ni.15.2.08per.

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This article examines a Senegalese narrative practice in which speakers make co-present individuals into denoted characters in their stories, a process I refer to as “participant transposition.” I analyze participant transposition in illness narratives recorded in Dakar, Senegal, during phases of which I am even recruited to play the part of the narrator's past self. I demonstrate how this narrative practice allows speakers to calibrate the realm of the story (the denotational text) with the storytelling event (the interactional text). (Illness narrative, Transposition, Textuality, Interaction, Senegal)

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Thompson, Marie. "Narrative mapping: Listening with health, healing, and illness narratives in the classroom." Communication Teacher 33, no. 2 (December 4, 2017): 132–38. http://dx.doi.org/10.1080/17404622.2017.1400673.

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Hillman, Alexandra, Ian Rees Jones, Catherine Quinn, Sharon M. Nelis, and Linda Clare. "Dualities of dementia illness narratives and their role in a narrative economy." Sociology of Health & Illness 40, no. 5 (April 16, 2018): 874–91. http://dx.doi.org/10.1111/1467-9566.12729.

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Merid, Beza, and Tamara Kneese. "Illness Narratives, Networked Subjects, and Intimate Publics." Catalyst: Feminism, Theory, Technoscience 4, no. 1 (May 7, 2018): 1–6. http://dx.doi.org/10.28968/cftt.v4i1.293.

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This introduction provides an overview of the themes of this Special Section on Illness Narratives, Networked Subjects, and Intimate Publics. Drawing on the intersection of illness narratives and human-technological assemblages, the introduction frames this section’s consideration of how illness, disability, dying, and death are mediated within emerging digital spaces.

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Merid, Beza, and Tamara Kneese. "Illness Narratives, Networked Subjects, and Intimate Publics." Catalyst: Feminism, Theory, Technoscience 4, no. 1 (May 7, 2018): 1–6. http://dx.doi.org/10.28968/cftt.v4i1.29627.

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This introduction provides an overview of the themes of this Special Section on Illness Narratives, Networked Subjects, and Intimate Publics. Drawing on the intersection of illness narratives and human-technological assemblages, the introduction frames this section’s consideration of how illness, disability, dying, and death are mediated within emerging digital spaces.

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Håkanson, Cecilia, and Joakim Öhlén. "Illness narratives of people who are homeless." International Journal of Qualitative Studies on Health and Well-being 11, no. 1 (January 2016): 32924. http://dx.doi.org/10.3402/qhw.v11.32924.

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Baena, Rosalía. "Orientation and recognition in contemporary illness narratives." Prose Studies 42, no. 1 (January 2, 2021): 1–15. http://dx.doi.org/10.1080/01440357.2021.1995295.

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