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Journal articles on the topic 'Illness narrative'

Author: Grafiati

Published: 4 June 2021

Last updated: 21 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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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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3

Boyer, A. H. "Illness as Narrative." Contemporary Women's Writing 6, no. 2 (May 18, 2012): 186–88. http://dx.doi.org/10.1093/cww/vps011.

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4

Behrendt, Kathy. "Illness as Narrative." Medical Humanities 39, no. 1 (January 24, 2013): 65–66. http://dx.doi.org/10.1136/medhum-2012-010322.

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5

Hydén, Lars-Christer. "Illness and narrative." Sociology of Health & Illness 19, no. 1 (June 28, 2008): 48–69. http://dx.doi.org/10.1111/j.1467-9566.1997.tb00015.x.

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6

Jacobs, Barry. "Wharton's illness narrative." Families, Systems, & Health 15, no. 1 (1997): 103–7. http://dx.doi.org/10.1037/h0090127.

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7

Lindenmeyer, Antje. "Illness as Narrative." Life Writing 12, no. 1 (September 10, 2014): 109–12. http://dx.doi.org/10.1080/14484528.2015.957798.

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8

Hyden, Lars-Christer. "Illness and narrative." Sociology of Health and Illness 19, no. 1 (January 1997): 48–69. http://dx.doi.org/10.1111/1467-9566.00040.

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9

Hyden, Lars-Christer. "Illness and narrative." Sociology of Health and Illness 19, no. 1 (January 1997): 48–69. http://dx.doi.org/10.1111/1467-9566.ep10934289.

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10

Iannarino, Nicholas T. "“What a Loser That Guy Was”: Norm Macdonald’s Humorous Critique of the Romantic/Warrior Narrative." Journal of Communication Inquiry 42, no. 3 (April 20, 2018): 241–57. http://dx.doi.org/10.1177/0196859918771891.

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Illness narratives are stories that focus on, or are inspired by, the sometimes life-altering experience of illness. Most narrative constructions of these illness experiences are built upon one of three broad narrative “skeletons.” One skeletal subform, the romantic/warrior narrative, is critiqued by comedian Norm Macdonald in a humorous anecdote that mocks the expectation that cancer patients must wage an epic and heroic battle against their pernicious cancer to have a chance to survive. Macdonald explicates that such a mentality produces heroes and villains, winners and losers, and places additional burden on cancer patients. In this analysis, I argue that Macdonald’s effective use of humor and fulfillment of the five functions of health-related narration enable his story to gain narrative rationality and serve as effective rhetorical tools in encouraging the audience to accept the narrator’s critique of the romantic/warrior subform.

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11

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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12

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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13

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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14

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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15

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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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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17

Young, Elizabeth. "Memoirs." Narrative Inquiry 19, no. 1 (September 25, 2009): 52–68. http://dx.doi.org/10.1075/ni.19.1.04you.

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Four published memoirs refute culturally dominant ideas about severe mental illness as personal weakness, as something shameful, and as a condition that necessarily leads to isolation and disenfranchisement. The narrative structure and content of the memoirs reveal that people’s experience differs from the hegemonic discourse: while narrating symptoms, diagnosis, treatment, and acceptance of the illness, all four authors present themselves as accomplished, self-possessed, and socially integrated. Their memoirs, and the act of narrating their experiences with mental illness, challenge the established cultural discourse of mental illness as limitation. The narratives help change that discourse and our social attitudes toward people with mental illness.

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18

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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19

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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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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21

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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22

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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23

Uppal, Harjot. "Illness Narrative: Janice’s Story." Journal of Social Work in End-of-Life & Palliative Care 14, no. 2-3 (July 3, 2018): 134–42. http://dx.doi.org/10.1080/15524256.2018.1487365.

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24

Vickers, Neil. "Narrative identity and illness." Journal of Evaluation in Clinical Practice 18, no. 5 (September 21, 2012): 1070–71. http://dx.doi.org/10.1111/j.1365-2753.2012.01919.x.

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25

Behrendt, Kathy. "Narrative Aversion: Challenges for the Illness Narrative Advocate." Journal of Medicine and Philosophy 42, no. 1 (December 7, 2016): 50–69. http://dx.doi.org/10.1093/jmp/jhw031.

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26

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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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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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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Skultans, Vieda. "Narrative illness and the body." Anthropology & Medicine 7, no. 1 (April 2000): 5–13. http://dx.doi.org/10.1080/136484700109322.

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Jamani, Shana. "Reflections on an Illness Narrative." Journal of Family Nursing 1, no. 4 (November 1995): 415–20. http://dx.doi.org/10.1177/107484079500100405.

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31

Frank, Arthur W. "Ann Jurecic’s Illness as Narrative." Journal of Medical Humanities 34, no. 1 (August 28, 2012): 77–79. http://dx.doi.org/10.1007/s10912-012-9181-9.

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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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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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Adame, Alexandra L., and Roger M. Knudson. "Beyond the counter-narrative." Narrative Inquiry 17, no. 2 (December 31, 2007): 157–78. http://dx.doi.org/10.1075/ni.17.2.02ada.

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The discourse of the medical model of mental illness tends to dominate people’s conceptions of the origins and treatments of psychopathology. This reductionistic discourse defines people’s experiences of psychological distress and recovery in terms of illnesses, chemical imbalances, and broken brains. However, the master narrative does not represent every individual’s lived experience, and alternative narratives of mental health and recovery exist that challenge our traditional understandings of normality and psychopathology. Guided by the method of interpretive interactionism, we examined how psychiatric survivors position themselves in relation to the medical model’s narrative of recovery. In its inception, the psychiatric survivor movement created a counter-narrative of protest in opposition to the medical model’s description and treatment of psychopathology. Since then, the movement has moved beyond the counter-narrative and has constructed an alternative narrative; one that is not defined in opposition to the master narrative but instead participates in an entirely different discourse.

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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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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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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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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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Oyebode, Femi. "Autobiographical narrative and psychiatry." Advances in Psychiatric Treatment 9, no. 4 (July 2003): 265–70. http://dx.doi.org/10.1192/apt.9.4.265.

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This paper addresses how mental illness and psychiatry are presented in autobiographical narratives. The richness of clinical psychopathology unmediated by the expectations of psychiatry is described. The rituals of psychiatry, the importance of the personal relationships between patients and clinicians, and the subjective beliefs of people about mental illness are explored.

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Tynan, Avril. "Overreading Illness: Interpretation and Narrative Absence." Storyworlds: A Journal of Narrative Studies 11, no. 2 (December 2019): 27–52. http://dx.doi.org/10.1353/stw.2019.0004.

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Shaw, David. "Narrative research in health and illness." Clinical Medicine 5, no. 4 (July 1, 2005): 417. http://dx.doi.org/10.7861/clinmedicine.5-4-417.

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Emmons, Kimberly K. "Illness as Narrative by Ann Jurecic." Literature and Medicine 32, no. 1 (2014): 227–33. http://dx.doi.org/10.1353/lm.2014.0008.

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Frank, Arthur W. "Just listening: Narrative and deep illness." Families, Systems, & Health 16, no. 3 (1998): 197–212. http://dx.doi.org/10.1037/h0089849.

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Baider, Lea. "Communicating about illness: a family narrative." Supportive Care in Cancer 16, no. 6 (January 16, 2008): 607–11. http://dx.doi.org/10.1007/s00520-007-0370-4.

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Jordens, Christopher F. C. "Narrative Research in Health and Illness." BMJ 330, no. 7503 (June 2, 2005): 1336.1. http://dx.doi.org/10.1136/bmj.330.7503.1336.

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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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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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Leichter, David J. "Communication Breakdown." Social Philosophy Today 35 (2019): 59–73. http://dx.doi.org/10.5840/socphiltoday201981263.

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The turn to narrative in biomedicine has been one of the most important alternatives to traditional approaches to bioethics. Rather than using ethical theories and principles to guide behavior, narrative ethics uses the moral imagination to cultivate and expand one’s capacities for empathy. This paper argues that by themselves narratives do not, and cannot, fully capture the range of the illness experience. But more than that, the emphasis on narrative often obscures how dominant forms of narrative discourse often operate to marginalize those whose narratives fall outside the parameters of traditional narrative forms or whose stories are occluded by structural violence and oppression. Rather, by focusing on forms of embodiment that are irreducible to narrative discursivity, this paper highlights forms of selfhood that exist outside of the narrative self.

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Oyebode, Femi. "Fictional narrative and psychiatry." Advances in Psychiatric Treatment 10, no. 2 (March 2004): 140–45. http://dx.doi.org/10.1192/apt.10.2.140.

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This article addresses how mental illness and psychiatry are dealt with in fictional narrative. The starting point is Charlotte Bronte's novel Jane Eyre. The characterisation of madness in that novel provides the basis for exploring how the physical and psychological differences of mentally ill people are portrayed, and how violence and the institutional care of people with mental illnesses are depicted. It is also argued that the fact that in Jane Eyre, Bertha Mason, the madwoman in the attic, is rendered voiceless is not accidental but emblematic of the depiction of mentally ill people in fiction. A number of novels are used to illustrate these issues.

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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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