Tag: personal stories

Battling the unknown: Using composite vignettes to portray lived experiences of COVID-19 and long-COVID

Abstract:

Understanding the day-to-day lived experiences of individuals who have had or are still recovering from Coronavirus Disease-19 (COVID-19), whilst a complex challenge, presents the opportunity to listen and learn. Composite vignettes provide a novel approach to explore and present descriptive portrayals of the most commonly derived experiences and recovery journeys.

The thematic analysis of 47 shared accounts (semi-structured interviews with adults aged ≥18 years; 40 females; 6-11 months post-COVID-19 infection) produced a series of four intricate character stories written through the lens of a single individual. Each vignette gives a voice to and captures a different experience trajectory.

From the point of initial symptom development onwards, the vignettes depict how COVID-19 has affected everyday lives, focusing on the secondary non-biological socio-psychological effects and implications. The vignettes highlight in participants’ own words: i) the potential negative implications of not addressing the psychological effects of COVID-19; ii) the lack of symptom and recovery linearity; iii) the ongoing ‘lottery’ of access to healthcare services; and iv) the highly variable, yet generally devastating, impacts that COVID-19 and consequent long-COVID has had across multiple facets of daily living.

Source: Knight RL, Mackintosh KA, Hudson J, Shelley J, Saynor ZL, McNarry MA. Battling the unknown: Using composite vignettes to portray lived experiences of COVID-19 and long-COVID. PLoS One. 2023 Apr 26;18(4):e0284710. doi: 10.1371/journal.pone.0284710. PMID: 37099534; PMCID: PMC10132598. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10132598/ (Full text)

Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence

Abstract:

Thirteen women (16-30 years) storied their experiences about the process of falling severely ill with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during childhood and adolescence. We performed a narrative analysis informed by phenomenology which yielded three central themes: The active and meaningful life I used to live; gradually developing unhomeliness and feeling pushed toward the edge; and left abandoned on the sidelines. Out of the incomprehensible and unpredictable emerges an understanding of the scale of their ordeal, along with advice that may have made it worse. This portrays a gradual developing uncertain, unhomely life situation with no outlooks for future recovery.

Source: Krabbe SH, Mengshoel AM, Schrøder Bjorbækmo W, Sveen U, Groven KS. Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence. Health Care Women Int. 2022 Apr 11:1-23. doi: 10.1080/07399332.2022.2043862. Epub ahead of print. PMID: 35404768.  https://www.tandfonline.com/doi/full/10.1080/07399332.2022.2043862 (Full study)

Extremely Severe ME/CFS—A Personal Account

Abstract:

A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely severe ME/CFS. Illness progression, medical history, description of various aspects of extremely severe ME/CFS and various essays on specific experiences are included.
Source: Dafoe W. Extremely Severe ME/CFS—A Personal Account. Healthcare. 2021; 9(5):504. https://doi.org/10.3390/healthcare9050504 https://www.mdpi.com/2227-9032/9/5/504/htm (Full text)

Living with ME/CFS: Robie’s Story | ME/CFS Alert Episode 99

Llewellyn King interviews 42-year-old Robie Robataille. In this video Robie talks about her difficulty in getting a diagnosis and her gradual decline to the way she lives now: She takes a couple of hours to wake in morning and can only stomach a shake made by her parents.

She speaks frankly about the loneliness of the disease, and how her two dogs and two cats mean so much to her; where one would long for human touch, she has only the caress of her animals. Robie tells the story of her decline over 15 years to a point, four years ago, when she had to abandon her home and life in Texas to be taken care of by her parents in Wrentham, MA.