Illness Experience
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2021 ◽  
pp. 147332502110466
Alison Fixsen

This article sheds light on autoethnographic accounts of mental illness, to address author and reader concerns and questions and to consider what practitioners can learn from these narrative accounts. Drawing from my own and others’ trajectories, I discuss the drawbacks and dangers of exposing a ‘flawed’ identity, the stigma of serious mental illness, intertextuality issues, the tangled nature of revelation and redemption, framing the ‘Other’ in mental illness autoethnography and depictions of ‘life in the asylum.’ I explain how in telling my own ‘psychiatric’ tale, I looked to the symbolic concept of ‘communitas’ as a means of examining inter-relational processes and collective experience in a psychiatric facility. I argue that, while the act of writing about one’s illness experience can be rightly perceived as a way of reclaiming personal ‘power’ and facilitating healing, attempts to ‘evidence’ recovery can run counter to the writer’s reality of life with or beyond mental illness as personally and socially messy. In answer to the question, ‘at what point does a ‘life in the asylum’ narrative become autoethnographic?' I argue for the potential of autoethnography to contribute to broader sociological, ethnographic and medical debates and thus impact on policy. Speaking up about mental health through autoethnography can help to promote awareness of the unpredictability and socially constructed nature of mental illness and can inform strategies toward reducing public stigma, tackle the cyclical impact of labels, highlight the need to change social and medical attitudes, and revisualize treatment and support.

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0255469
Catherine Huckle ◽  
Frederike Lemmel ◽  
Sonia Johnson

Background First episode psychosis and reduced social networks have been found to go hand in hand, but specific mechanisms are unclear. The manifestation of symptoms and the effect of stigma are two possibilities discussed in the literature but the experiences and views of young people with psychosis have been neglected. Aims To explore experiences of friendships of young people with first-episode psychosis, focusing especially on any perceived changes in their friendships or approach to peer relationships as a result of the illness. Methods Fourteen participants were interviewed using a semi-structured interview guide, which explored participants’ views and experiences of their friendships during the acute phase of illness and in the path to recovery, the impact of friendships on illness experience and of illness on patterns of social contact, and the potential role of services in supporting people with their friendships. Interviews were transcribed verbatim and analysed thematically. Results Identified themes included the loss of social contacts because both young people developing psychosis withdrew and because friends withdrew as illness developed. Regarding recovery, a unique role was identified for friends and participants were often making conscious efforts to rebuild social networks. Mental health services were viewed as having a limited direct role in this. Conclusions Supporting the development of opportunities and skills needed for social relationships following an episode of psychosis may be a useful focus.

Children ◽  
2021 ◽  
Vol 8 (8) ◽  
pp. 657
Donna S. Zhukovsky ◽  
Cathy L. Rozmus ◽  
Rhonda Robert ◽  
Eduardo Bruera ◽  
Robert J. Wells ◽  

Understanding the symptom and illness experience of children with advanced cancer facilitates quality care; yet, obtaining this understanding is complicated by the child’s developmental level and physical and psychological health factors that affect communication. The purpose of this study was to describe the symptom and illness experience of English- and Spanish-speaking children with advanced cancer as described by the child and parent. We conducted hermeneutic phenomenological, descriptive, and interpretive interviews with eligible children and parents. The interdisciplinary research team analyzed transcripts hermeneutically until consensus on theme labels was reached. Four themes and associated subthemes were identified from the interviews of the 10 child–parent dyads: 1. symptoms disrupt life (path to diagnosis, life is disrupted), 2. isolation (lack of understanding, family separations/relationships), 3. protection, and 4. death is not for children. Children and parents readily described the impact symptoms and cancer treatment had on their lives and relationships. These findings underscore the salient aspects of daily life disrupted by cancer. With a deeper understanding of symptom burden and its interference, relationship and communication implications, and anticipatory grief, the treating team may better optimize care for children and their families living with advanced cancer.

2021 ◽  
Vol 83 ◽  
pp. 235-250
Daniele Monticelli ◽  

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.

2021 ◽  
Vol 21 (1) ◽  
Yang Yuan ◽  
Hong Wang ◽  
Qiuyun Chen ◽  
Congyan Xie ◽  
Haixia Li ◽  

Abstract Background The incidence of Sudden Sensorineural Hearing Loss (SSNHL) is increasing and tends to occur at a young age. The patient’s disease experience during treatment is related to their physical and mental health. Effective coping styles such as proactively solving problems and asking for help will alleviate the patients’ psychological symptoms and improve their quality of life. Aims and objectives To explore the illness experience and coping styles of young and middle-aged patients with SSNHL (age: 18–64 years), clarify the relationship between the two, and understand the psychological state and needs of the patients. Methods The purposive and maximum difference sampling method was used to conduct semi-structured interviews with 23 young and middle-aged SSNHL patients. The interview data were analyzed by Colaizzi’s seven-step analysis. Results The illness experience of young and middle-aged SSNHL patients was complex, including symptoms during the onset of deafness and emotional experience before and after diagnosis. The coping styles of young and middle-aged SSNHL patients were active and diverse, including active acquisition of information, change in living habits, and seeking the care and attention of medical staff. Illness experience and coping style influence each other: good illness experience leads to active coping styles; active coping style results in good illness experience. Conclusions The illness experience of young and middle-aged SSNHL patients includes not only physical symptoms, but also changes in psychological and emotional reactions. Good illness experience can lead patients to adopt active coping style. Active and effective coping styles, such as positive acquisition of information, change in living habits and seeking care and help, can improve patients’ illness experience.

2021 ◽  
Vol 30 (4) ◽  
pp. 312-319
Carol K. Chan ◽  
Yiqing Song ◽  
Ryan Greene ◽  
Heidi Lindroth ◽  
Sikandar Khan ◽  

Background Between 30% and 80% of survivors of critical illness experience cognitive impairment, but the underlying mechanisms remain unknown. Objective To determine whether intensive care unit (ICU) delirium biomarkers align with the National Institute on Aging–Alzheimer’s Association (NIA-AA) research framework for diagnostic biomarkers for Alzheimer disease and other related dementias (ADRD). Methods Ovid MEDLINE, PsycInfo, Embase, and the Cochrane Library were systematically searched for articles published between January 1, 2000, and February 20, 2020, on the relationship between delirium and biomarkers listed in the NIA-AA framework. Only studies that addressed delirium in the ICU setting and fluid biomarkers were included in these analyses. Results Of 61 256 records screened, 38 studies met inclusion criteria, 8 of which were suitable for meta-analysis. In pooled analysis, significant associations were found between ICU delirium and amyloid β-peptide 1-40 (standard mean difference [SMD], 0.42; 95% CI, 0.09-0.75), interleukin (IL)-1 receptor antagonist (SMD, 0.58; 95% CI, 0.21-0.94), and IL-6 (SMD, 0.31; 95% CI, 0.06-0.56). No significant association was observed in pooled analyses between ICU delirium and the other biomarkers. Few studies have examined ICU delirium and pathologic tau or neurodegeneration biomarkers. Conclusions Inflammatory biomarkers and amyloid β are associated with ICU delirium and point to potential overlapping mechanisms between delirium and ADRD. Critical care providers should consider integrating diagnostic approaches used in ADRD in their assessment of post–ICU cognitive dysfunction.

2021 ◽  
pp. bmjstel-2021-000886
Linda Ní Chianáin ◽  
Richard Fallis ◽  
Jenny Johnston ◽  
Nancy McNaughton ◽  
Gerard Gormley

BackgroundPerson-centred simulation in health professions education requires involvement of the person with illness experience.ObjectiveTo investigated how real illness experiences inform simulated participants’ (SP) portrayals in simulation education using a scoping review to map literature.Study selectionArksey and O’Malley’s framework was used to search, select, chart and analyse data with the assistance of personal and public involvement. MEDLINE, Embase, CINAHL, Scopus and Web of Science databases were searched. A final consultation exercise was conducted using results.Findings37 articles were within scope. Reporting and training of SPs are inconsistent. SPs were actors, volunteers or the person with the illness experience. Real illness experience was commonly drawn on in communication interactions. People with illness experience could be directly involved in various ways, such as through conversation with an SP, or indirectly, such as a recording of heart sounds. The impact on the learner was rarely considered.ConclusionAuthentic illness experiences help create meaningful person-centred simulation education. Patients and SPs may both require support when sharing or portraying illness experience. Patients’ voices profoundly enrich the educational contributions made by SPs.

Healthcare ◽  
2021 ◽  
Vol 9 (6) ◽  
pp. 726
Fulvia Ceccarelli ◽  
Venusia Covelli ◽  
Giulio Olivieri ◽  
Francesco Natalucci ◽  
Fabrizio Conti

Background: The COVID-19 pandemic contributes to the burden of living with different diseases, including Systemic Lupus Erythematosus (SLE). We described, from a narrative point of view, the experiences and perspectives of Italian SLE adults during the COVID-19 emergency, by distinguishing the illness experience before and after the lockdown. Methods: Fifteen patients were invited to participate. Illness narratives were collected between 22 and 29 March 2020 using a written modality to capture patients’ perspectives before and after the COVID-19 lockdown. We performed a two-fold analysis of collected data by distinguishing three narrative types and a qualitative analysis of content to identify the relevant themes and sub-themes reported. Results: Eight narratives included in the final analysis (mean length 436.9 words) have been written by eight females (mean age 43.3 ± 9.9 years, mean disease duration 13.1 ± 7.4 years). Six patients provided a quest narrative, one a chaos and the remaining one a restitution narrative. By text content analysis, we identified specific themes, temporally distinct before and after the lockdown. Before COVID-19, all the patients referred to a good control of disease, however the unexpected arrival of the COVID-19 emergency broke a balance, and patients perceived the loss of health status control, with anxiety and stress. Conclusions: We provided unique insight into the experiences of people with SLE at the time of COVID-19, underlining the perspective of patients in relation to the pandemic.

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