Tag: stigma

Exploring the Experience of Healthcare-Related Epistemic Injustice among People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Abstract:

Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a chronic, disabling yet clinically “contested” condition, previously theorised through a lens of epistemic injustice. Phenomena conceptually close to epistemic injustice, including stigma, are known to have deleterious consequences on a person’s health and life-world. Yet, no known primary studies have explored how people with ME/CFS experience healthcare through a lens of epistemic injustice, whilst a dearth of research explicitly exploring healthcare-related injustice from a patient perspective has been noted. This qualitative study seeks to address this gap.

Semi-structured interviews and interpretative phenomenological analysis (IPA) were used to explore the experiences of five people with ME/CFS in the UK, vis-à-vis healthcare-related epistemic injustice. One superordinate theme is presented, “Being de-centred in patient-centred care,” alongside two sub-themes: “Struggling for epistemic-existential validation” and “Negotiating socio-epistemic hierarchies, politics and ‘power’.”

Findings suggest that healthcare-related epistemic injustice may differentially impact according to the patient’s social positionality (here, notably gender), and that a potential pathway of existential harm operates through threats to identity and personhood. Findings also indicate that cultural and political factors may further epistemic injustice in healthcare. Finally, epistemic injustice impacting as a chronic stressor cannot be ruled out and is worthy of further research.

The experience of healthcare-related epistemic injustice can carry far-reaching yet varied consequences for patients. Future research should consider drawing upon more socio-demographically diverse samples and an intersectional approach is recommended. Further exploration of structural drivers of epistemic injustice may highlight a need for politically and socio-culturally cognisant clinical approaches.

Source: Hunt, J., Runacres, J., Herron, D., & Sheffield, D. (2024). Exploring the Experience of Healthcare-Related Epistemic Injustice among People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. The Qualitative Report, 29(4), 1125-1148. https://doi.org/10.46743/2160-3715/2024.6519 https://nsuworks.nova.edu/tqr/vol29/iss4/15/ (Full text available as PDF file)

What is the impact of long-term COVID-19 on workers in healthcare settings? A rapid systematic review of current evidence

Abstract:

Background: Long COVID is a devastating, long-term, debilitating illness which disproportionately affects healthcare workers, due to the nature of their work. There is currently limited evidence specific to healthcare workers about the experience of living with Long COVID, or its prevalence, pattern of recovery or impact on healthcare.

Objective: Our objective was to assess the effects of Long COVID among healthcare workers and its impact on health status, working lives, personal circumstances, and use of health service resources.

Methods: We conducted a systematic rapid review according to current methodological standards and reported it in adherence to the PRISMA 2020 and ENTREQ statements.

Results: We searched relevant electronic databases and identified 3770 articles of which two studies providing qualitative evidence and 28 survey studies providing quantitative evidence were eligible. Thematic analysis of the two qualitative studies identified five themes: uncertainty about symptoms, difficulty accessing services, importance of being listened to and supported, patient versus professional identity and suggestions to improve communication and services for people with Long COVID. Common long-term symptoms in the survey studies included fatigue, headache, loss of taste and/or smell, breathlessness, dyspnoea, difficulty concentrating, depression and anxiety.

Conclusion: Healthcare workers struggled with their dual identity (patient/doctor) and felt dismissed or not taken seriously by their doctors. Our findings are in line with those in the literature showing that there are barriers to healthcare professionals accessing healthcare and highlighting the challenges of receiving care due to their professional role. A more representative approach in Long COVID research is needed to reflect the diverse nature of healthcare staff and their occupations. This rapid review was conducted using robust methods with the codicil that the pace of research into Long COVID may mean relevant evidence was not identified.

Source: Cruickshank M, Brazzelli M, Manson P, Torrance N, Grant A. What is the impact of long-term COVID-19 on workers in healthcare settings? A rapid systematic review of current evidence. PLoS One. 2024 Mar 5;19(3):e0299743. doi: 10.1371/journal.pone.0299743. PMID: 38442116; PMCID: PMC10914278. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10914278/ (Full text)

Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study

Highlights:

  • First time study on mental health and well-being among ME/CFS patients in Switzerland.
  • High level (68.5%) of stigmatization reported due to ME/CFS.
  • Overall, ME/CFS led to a third of the patients and to half of the male patients to have suicidal thoughts.
  • ME/CFS led to secondary depression in 14.8% of the patients.
  • Lack of disease recognition and adequate patient support.

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating chronic disease of significant public health and clinical importance. It affects multiple systems in the body and has neuro-immunological characteristics. The disease is characterized by a prominent symptom called post-exertional malaise (PEM), as well as abnormalities in the immune-inflammatory pathways, mitochondrial dysfunctions and disturbances in neuroendocrine pathways. The purpose of this study was to evaluate the impact of ME/CFS on the mental health and secondary psychosocial manifestations of patients, as well as their coping mechanisms.

Method: In 2021, a descriptive cross-sectional study was conducted in Switzerland. A self-administered paper questionnaire survey was used to gather data from 169 individuals diagnosed with ME/CFS.

Results: The majority of the patients (90.5%) reported a lack of understanding of their disease, resulting in patients avoiding talking about the disease due to disbelief, trivialization and avoidance of negative reactions. They felt most supported by close family members (67.1%). Two thirds of the patients (68.5%) experienced stigmatization. ME/CFS had a negative impact on mental health in most patients (88.2%), leading to sadness (71%), hopelessness for relief (66.9%), suicidal thoughts (39.3%) and secondary depression (14.8%). Half of the male patients experienced at least one suicidal thought since clinical onset. Factors significantly associated with depression were the lack of cure, disabilities associated with ME/CFS, social isolation and the fact that life was not worth anymore with ME/CFS. The three main factors contributing to suicidal thoughts were (i) being told the disease was only psychosomatic (89.5%), (ii) being at the end of one’s strength (80.7%) and (iii) not feeling being understood by others (80.7%).

Conclusion: This study provided first time significant insights into the mental and psychological well-being of ME/CFS patients in Switzerland. The findings highlight the substantial experiences of stigmatization, secondary depression and suicidal thoughts compared to other chronic diseases, calling for an urgent need in Switzerland to improve ME/CFS patient’s medical, psychological and social support, in order to alleviate the severe mental health burden associated with this overlooked somatic disease.

Source: Rahel Susanne König, Daniel Henry Paris, Marc Sollberger, Rea Tschopp.  Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study, HELIYON (2024), doi: https:// doi.org/10.1016/j.heliyon.2024.e27031. https://www.sciencedirect.com/science/article/pii/S2405844024030627 (Full text)

Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients

Abstract:

Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of researchers to date classify the disease as organic, many physicians still believe that ME/CFS is a psychosomatic illness.
In this article, we show how detrimental this belief is to the care and well-being of affected patients and, as a consequence, how important the education of physicians and the public is to stop misdiagnosis, mistreatment, and stigmatization on the grounds of incorrect psychosomatic attributions about the etiology and clinical course of ME/CFS.
Source: Thoma M, Froehlich L, Hattesohl DBR, Quante S, Jason LA, Scheibenbogen C. Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients. Medicina. 2024; 60(1):83. https://doi.org/10.3390/medicina60010083 https://www.mdpi.com/1648-9144/60/1/83 (Full text)

Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in”

Abstract:

This article develops the conceptualisation of loneliness by drawing on 42 accounts of myalgic encephalomyelitis (ME). While illness experience is a central concern of the sociology of health and illness, experiences of loneliness alongside contested and chronic illness have received less attention. The analysis illustrates how loneliness can be an integral part of living with ME and offers two novel conceptual contributions – necessitated social isolation and compelled loneliness.

Necessitated social isolation concerns how ME symptoms can make social lives increasingly restricted. Compelled loneliness highlights how the combined experiences of both stigma and contested illness can lead to social withdrawal and rejection, which create a sense of loneliness. The article argues that loneliness and social isolation can be conceptually distinct yet recursive and overlapping.

With the worsening of ME, the participants experienced a cycle of loneliness, in which social isolation and loneliness reproduced each other. Three key themes draw attention to how loneliness is affected by the situational aspects of living with a chronic and contested illness: (1.) spatial and temporal restrictedness (2.) communicative alienation and (3.) discreditation. The article highlights how health challenges can impact on loneliness and how the stigma of contested illness exacerbates loneliness.

Source: Wotherspoon, N. (2023). Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in”. Sociology of Health & Illness, 1–18. https://doi.org/10.1111/1467-9566.13732 https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13732 (Full text)

Drawing the Line Between Postacute Sequelae of COVID-19 and Functional Neurologic Disorders A Daunting Clinical Overlap or Irrelevant Conundrum?

Abstract:

Coronavirus disease 2019 (COVID-19) is an acute infection caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) in its multiple variants that classically presents with cough, fatigue, fever, headache, myalgias, and diarrhea. As vaccination becomes widely available and infection rates facilitate herd immunity across the globe, more attention has been given to long-term symptoms that may persist after the index infection, which include impairments in concentration, executive dysfunction, sensory disturbances, depression, anxiety, fatigue, and cough, among other symptoms classified under the umbrella term of postacute sequelae of SARS-CoV-2 infection (PASC).

Functional neurologic disorder (FND), also known as conversion disorder and functional neurologic symptom disorder, refers to the presence of one or more symptoms of altered voluntary motor or sensory function that are incompatible with and not better explained by a known neurological or medical condition that causes significant distress and functional impairment. Although the diagnosis of FND may not require the identification of an underlying psychological stressor, being diagnosed with an FND can worsen stigma and shift attention and resources away from other medical concerns that should be concomitantly addressed.

This review summarizes the literature on the overlapping nature and discrimination of PASC from FND in COVID-19 survivors. Based on this, we develop a treatment framework that targets unique domains of these complex overlapping presentations, following a multidisciplinary approach with an individualized treatment plan inclusive of physical and psychological interventions focused on functional rehabilitation.

Source: Sales, Paulo M.G. MD, MS∗; Greenfield, Melissa J. PsyD∗; Pinkhasov, Aaron MD†; Viswanathan, Ramaswamy MD, DrMedSc‡; Saunders, Ramotse MD§; Huremović, Damir MD, MPP∥. Drawing the Line Between Postacute Sequelae of COVID-19 and Functional Neurologic Disorders: A Daunting Clinical Overlap or Irrelevant Conundrum?. The Journal of Nervous and Mental Disease 211(12):p 882-889, December 2023. | DOI: 10.1097/NMD.0000000000001643 https://journals.lww.com/jonmd/abstract/2023/12000/drawing_the_line_between_postacute_sequelae_of.2.aspx

Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study

Abstract:

Aims and objectives: Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), is characterised by persistent fatigue, postexertional malaise, and cognitive dysfunction. It is a complex, long-term, and debilitating illness without widely effective treatments. This study describes the treatment choices and experiences of ME/CFS patients who have experienced variable levels of recovery.

Method: Interpretive description study consisting of semi-structured qualitative interviews with 33 people who met the US Centers for Disease Control (2015) diagnostic criteria for ME/CFS and report recovery or symptom improvement.

Results: Twenty-six participants endorsed partial recovery, and seven reported full recovery from ME/CFS. Participants reported expending significant time and energy to identify, implement, and adapt therapeutic interventions, often without the guidance of a medical practitioner. They formulated individualised treatment plans reflecting their understanding of their illness and personal resources. Most fully recovered participants attributed their success to mind-body approaches.

Conclusion: Patients with ME/CFS describe independently constructing and managing treatment plans, due to a lack of health system support. Stigmatised and dismissive responses from clinicians precipitated disengagement from the medical system and prompted use of other forms of treatment.

Source: Hasan Z, Kuyvenhoven C, Chowdhury M, Amoudi L, Zeraatkar D, Busse JW, Sadik M, Vanstone M. Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study. J Eval Clin Pract. 2023 Nov 6. doi: 10.1111/jep.13938. Epub ahead of print. PMID: 37927138. https://onlinelibrary.wiley.com/doi/10.1111/jep.13938 (Full text)

Healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis: a scoping review

Abstract:

Background: Myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or ME/CFS) is a debilitating, complex, multi-system illness. Developing a comprehensive understanding of the multiple and interconnected barriers to optimal care will help advance strategies and care models to improve quality of life for people living with ME in Canada.

Objectives: To: (1) identify and systematically map the available evidence; (2) investigate the design and conduct of research; (3) identify and categorize key characteristics; and (4) identify and analyze knowledge gaps related to healthcare system barriers for people living with ME in Canada.

Methods: The protocol was preregistered in July 2022. Peer-reviewed and grey literature was searched, and patient partners retrieved additional records. Eligible records were Canadian, included people with ME/CFS and included data or synthesis relevant to healthcare system barriers.

Results: In total, 1821 records were identified, 406 were reviewed in full, and 21 were included. Healthcare system barriers arose from an underlying lack of consensus and research on ME and ME care; the impact of long-standing stigma, disbelief, and sexism; inadequate or inconsistent healthcare provider education and training on ME; and the heterogeneity of care coordinated by family physicians.

Conclusions: People living with ME in Canada face significant barriers to care, though this has received relatively limited attention. This synthesis, which points to several areas for future research, can be used as a starting point for researchers, healthcare providers and decision-makers who are new to the area or encountering ME more frequently due to the COVID-19 pandemic.

Source: Said Hussein, Lauren Eiriksson, Maureen MacQuarrie, Scot Merriam, Maria Dalton, Eleanor Stein, Rosie Twomey. Healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis: a scoping review. medRxiv [Preprint] https://www.medrxiv.org/content/10.1101/2023.09.20.23295809v1.full-text (Full text)

Invisibility and diagnosis stigma: disabling factors for female adults with myalgia encephalomyelitis (ME)/chronic fatigue syndrome (CFS) in a small-scale qualitative study in England

Abstract:

Purpose: Female adults diagnosed with myalgia encephalomyelitis (ME) and chronic fatigue syndrome (CFS) often are marginalised because their condition is not fully recognised by medical and health-care systems. The purpose of this small-scale study was to explore the lived experiences of adult females with ME/CFS in England in relation to contributing factors that impact their occupational participation.

Design/methodology/approach: A qualitative study design using semi-structured interviews was used with nine female adult participants who were selected using a purposive sampling method. A Thematic Networks tool was used to analyse data.

Findings: Four organising themes were identified: impairment-, person-, environment- and society-related factors. Two global themes, invisibility and diagnosis stigma, were identified as the overarching issues that female adults with ME/CFS face in occupational participation.

Originality/value: Many of the issues that contribute to lack of participation by this population are associated with environmental factors which are secondary to their illness.

Source: Khalafbeigi, M., Yazdani, F., Genis, F., Hess, K.Y. and Kirve, S. (2023), “Invisibility and diagnosis stigma: disabling factors for female adults with myalgia encephalomyelitis (ME)/chronic fatigue syndrome (CFS) in a small-scale qualitative study in England”, Irish Journal of Occupational Therapy, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/IJOT-08-2022-0032 https://www.emerald.com/insight/content/doi/10.1108/IJOT-08-2022-0032/full/html (Full text)

The prevalence of stigma in a UK community survey of people with lived experience of long COVID

Abstract:

Background: Stigma can be experienced as perceived or actual disqualification from social and institutional acceptance on the basis of one or more physical, health-related, behavioural, or other attributes deemed to be undesirable. Long COVID is a predominantly multisystem condition that occurs in people with a history of SARS-CoV-2 infection, often resulting in functional disability, which limits day-to-day activities. We aimed to quantify the burden of stigma experienced in a community-based sample of people with lived experience of long COVID.

Methods: Data from the follow-up of a long COVID longitudinal online survey was used. The survey was coproduced with people living with long COVID. 13 questions on stigma were included to develop a Long COVID Stigma Scale capturing three domains: enacted (overt experiences of discrimination due to long COVID), internalised (internalising negative associations with long COVID and accepting them as self-applicable), and anticipated (expectation of bias or poor treatment by others) stigma. Data were collected through a social media survey with convenience non-probability sampling.

Findings: 966 (47·9%) of 2016 participants from the UK completed the follow-up survey and 888 responded to the questions on stigma. The mean age of respondents was 48·3 years (SD 10·7), and 84·6% identified as female. Roughly half (n=460, 50·4%) reported having a formal, clinical, long COVID diagnosis, and of these, 440 responded to the questions on stigma. The prevalence of people experiencing overall stigma at least sometimes was 95·4% (n=847), prevalence of enacted stigma was 62·7% (n=557), internalised stigma was 86·4% (n=767), and anticipated stigma was 90·8% (n=806). Prevalence of stigma was higher in respondents with a formal diagnosis of long COVID (97·5%; n=429) than in those without (93·2%; n=413).

Interpretation: This study highlights widespread and multilayered stigmas experienced by people living with long COVID in the UK, which presents a serious public health concern. The broader literature on stigmatised health conditions consistently suggests that stigma drives people away from health services, contributes to psychological distress, and compromises long-term physical outcomes. The higher proportion experiencing stigma in those with clinical diagnosis of long COVID might be indicative of stigma within the health-care system. Findings from this study should be taken into consideration within clinical practice and health care, social care, employment, and education policies.

Source: Pantelic M, Ziauddeen N, Boyes M, O’Hara ME, Hastie C, Alwan NA. The prevalence of stigma in a UK community survey of people with lived experience of long COVID. Lancet. 2022 Nov;400 Suppl 1:S84. doi: 10.1016/S0140-6736(22)02294-2. Epub 2022 Nov 24. PMID: 36930033. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)02294-2/fulltext