Dismissing chronic illness: A qualitative analysis of negative health care experiences

McManimen, Stephanie; McClellan, Damani; Stoothoff, Jamie; Gleason, Kristen D; Jason, Leonard A.

doi:10.1080/07399332.2018.1521811

Cited by 39 publications

(33 citation statements)

References 35 publications

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“…This is particularly true with respect to symptom dismissal and diagnostic delay, and has been well documented in chronic pain conditions such as fibromyalgia, endometriosis, and vulvodynia. [15][16][17][18][19] Advocacy organizations, members of the Overlapping Conditions Alliance (OCA) and the Campaign to End Chronic Pain in Women cited multiple potential reasons for neglect, dismissal, and discrimination, including research disparities, lack of education, stigma, and gender bias. 20 Subsequent to this, they advocated for cost-effective research investments, HCP education, and expanding public awareness.…”

Section: Discussionmentioning

confidence: 99%

“…While the literature in the bleeding disorders realm is sparse, 14 gendered experiences accessing health care have been noted across a diverse spectrum of other diseases, including both rare and common conditions. This is particularly true with respect to symptom dismissal and diagnostic delay, and has been well documented in chronic pain conditions such as fibromyalgia, endometriosis, and vulvodynia 15‐19 . Advocacy organizations, members of the Overlapping Conditions Alliance (OCA) and the Campaign to End Chronic Pain in Women cited multiple potential reasons for neglect, dismissal, and discrimination, including research disparities, lack of education, stigma, and gender bias 20 .…”

Section: Discussionmentioning

confidence: 99%

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“They don’t really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders

Arya

Wilton

Page

et al. 2021

Journal of Thrombosis and Haemostasis

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Introduction: Women with inherited bleeding disorders experience excessive bleeding that may impair their quality of life, making early diagnosis and treatment critical.However, the experiences of these women regarding access to care has been minimally described. The primary objective of this study was to evaluate and describe barriers to care for women with bleeding disorders. This study was a continuation of our previous work describing the lived experiences of these women. Methods:We undertook a qualitative descriptive study. Inclusion criteria for study enrollment were the following: age ≥18 years, English-speaking, and confirmed diagnosis of an inherited bleeding disorder. Women were recruited across Canada by treating health-care providers and members of the Canadian Hemophilia Society.Telephone interviews were conducted using a semi-structured interview style, transcribed verbatim, and analyzed using descriptive thematic analysis.Results: A total of 15 participants were interviewed. Median age was 31 years (range 24-70 years). Four primary themes surrounding barriers to care emerged: (1) lack of health-care provider awareness of bleeding disorders, (2) health-care provider dismissal of symptoms, (3) limited access to specialized care and treatment plans, and (4) need for self-education and advocacy. Discussion:We found that women with inherited bleeding disorders experience tension with the health-care system, feeling unheard and poorly understood. Based on our findings, we identified key knowledge and care gaps that could be addressed with awareness and educational initiatives: patient education on vaginal blood loss, updated medical curricula, clear referral guidelines, and telehealth initiatives for patients residing far from hemophilia treatment centers.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“They don’t really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders

Arya

Wilton

Page

et al. 2021

Journal of Thrombosis and Haemostasis

View full text Add to dashboard Cite

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“…Thus, up to 90% of people affected by ME/CFS remain undiagnosed, or they are misdiagnosed, often with depression, anxiety, or even malingering [10]. Perhaps because some information on ME/CFS is based on obsolete, limited, or flawed studies, patients continue to report negative attitudes and inappropriate treatments from medical providers [23].…”

Section: Lack Of Education and Accurate Information Among Healthcare Professionalsmentioning

confidence: 99%

Environmental accommodations for university students affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Chu

Fuentes²,

Marshall

et al. 2020

WOR

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BACKGROUND: Today, 24% of college and university students are affected by a chronic health condition or disability. Existing support programs, including disability services, within colleges and universities are often unaccustomed to addressing the fluctuating and unpredictable changes in health and functioning faced by students with severe chronic illnesses. This situation is especially difficult for students with lesser-known, invisible diseases like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex disease affecting up to 2.5 million Americans which often begins in late adolescence or young adulthood. OBJECTIVE: Educate occupational therapists (OTs) about ME/CFS and steps they can take to assist students. METHODS: This work is based on a review of the scientific literature and our collective professional/ personal experiences. RESULTS: ME/CFS' effects on multiple organ systems combined with the unusual symptom of post-exertional malaise frequently and substantially decrease function. Currently, no effective disease-modifying treatments have been established. Nevertheless, OTs can help student maximize their participation in university life by identifying potential obstacles, formulating practical solutions and negotiating with their institutions to implement reasonable, environmental accommodations. CONCLUSIONS: Through understanding this disease, being aware of possible support options, and recommending them as appropriate, OTs are in unique position to greatly improve these students' lives.

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“…Its cause is unknown [ 3 ], and studies suggest it affects 0.4% of the population [ 4 ]. Criteria have been produced to identify clinical characteristics [ 5 ]; however, diagnosis remains by exclusion due to the absence of biomarkers [ 6 ], which has led to significant stigma [ 7 ].…”

Section: Introductionmentioning

confidence: 99%

Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

2021

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Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a rare disease with no known etiology. It affects 0.4% of the population, 25% of which experience the severe and very severe categories; these are defined as being wheelchair-, house-, and bed-bound. Currently, the absence of biomarkers necessitates a diagnosis by exclusion, which can create stigma around the illness. Very little research has been conducted with the partly defined severe and very severe categories of CFS/ME. This is in part because the significant health burdens experienced by these people create difficulties engaging in research and healthcare provision as it is currently delivered. This qualitative study explores the experiences of five individuals living with CFS/ME in its most severe form through semi-structured interviews. A six-phase themed analysis was performed using interview transcripts, which included identifying, analysing, and reporting patterns amongst the interviews. Inductive analysis was performed, coding the data without trying to fit it into a pre-existing framework or pre-conception, allowing the personal experiences of the five individuals to be expressed freely. Overarching themes of ‘Lived Experience’, ‘Challenges to daily life’, and ‘Management of the condition’ were identified. These themes highlight factors that place people at greater risk of experiencing the more severe presentation of CFS/ME. It is hoped that these insights will allow research and clinical communities to engage more effectively with the severely affected CFS/ME population.

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Dismissing chronic illness: A qualitative analysis of negative health care experiences

Cited by 39 publications

References 35 publications

“They don’t really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders

“They don’t really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders

Environmental accommodations for university students affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

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