Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence

Mayor, Rebecca; Gunn, Sarah; Reuber, Marcus; Simpson, Jane

doi:10.1016/j.seizure.2021.11.021

Cited by 31 publications

(19 citation statements)

References 82 publications

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“…Proximal minority stress, a form of self-stigma, was associated with quality of life functioning for sexual minority persons living with CIDs. This finding is consistent with other studies that found various forms of stigma were associated with the quality of life for persons living with CIDs (Char & Bogart, 2022; Degnan et al, 2021; Logie et al, 2018; Mayor et al, 2022) and sexual minority persons (Austin et al, 2017; Fredrick et al, 2020). In this study, internalized heterosexism negatively predicted intrapersonal functioning, such as one's ability to engage in activities of daily living (e.g., walking, grooming, bathing, dressing, toileting, etc.).…”

Section: Discussionsupporting

confidence: 93%

“…Quality of life is a highly relevant construct for persons living with CIDs (Busija et al, 2017) and sexual minority persons DISPENZA 2 (Vosvick & Stem, 2019). Further, and to varying degrees, stigma is associated with the quality of life for those living with multiple CID conditions (Char & Bogart, 2022;Degnan et al, 2021;Logie et al, 2018;Mayor et al, 2022). Additionally, researchers have reported a relation between stigma and quality of life for sexual minority persons (Austin et al, 2017;Fredrick et al, 2020).…”

Section: Quality Of Life Functioningmentioning

confidence: 99%

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Chronic illness and disability among sexual minority persons: Exploring the roles of proximal minority stress, adaptation, and quality of life.

Dispenza¹

2023

Psychology of Sexual Orientation and Gender Diversity

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This cross-sectional, correlational study examined the associations between proximal minority stress, psychosocial adaptation to chronic illnesses and disabilities (CIDs), and quality of life with a sample of 160 sexual minority persons. Data used in this study came from a larger online survey study conducted in the United States. Original survey procedures used targeted online sampling to recruit participants via Internet and social media venues directed toward sexual minority, gender minority, and disability communities. Participants were 29.65 years of age on average and reported living with either physical, sensory, cognitive, developmental, or psychiatric CID conditions. As part of the online survey, participants responded to measures of internalized heterosexism, stigma consciousness, outness, reactions to impairment and disability, and quality of life functioning. Findings revealed that proximal minority stressors are associated with poorer psychosocial adaptation and quality of life functioning for sexual minority persons living with CIDs. Clinicians should attend to proximal minority stress when providing clinical services to sexual minority persons living with CIDs.

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Section: Discussionsupporting

confidence: 93%

Section: Quality Of Life Functioningmentioning

confidence: 99%

Chronic illness and disability among sexual minority persons: Exploring the roles of proximal minority stress, adaptation, and quality of life.

Dispenza¹

2023

Psychology of Sexual Orientation and Gender Diversity

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“…13,14 These attitudes can cause the individual to distance himself from health professionals and other people. [14][15][16] Better communication between health professionals, patients and their families is thus very important in combating society's negative prejudice about epilepsy. 17 In previous studies, it has been determined that there are deficiencies in the communication between the health personnel, the patient and the family in the services for the care of the epilepsy patient.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of midwifery students’ health fatalism, knowledge, and attitudes toward patients with epilepsy in Eastern Turkey

Koç,

ÖZKAN

2024

NeuroAsia

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Objective: This study was conducted to determine the relationship between midwifery students’ health fatalism, epilepsy knowledge, attitudes, and some sociodemographic variables. Methods: The descriptive cross-sectional study was conducted with 270 midwifery department students who were studying at a state university and who agreed to participate in the study in eastern Turkey during the 2021–2022 academic year. The data were collected using a Sociodemographic Information Form, the Health Fatalism Scale (HFS), the Epilepsy Knowledge Scale (EKS), and the Epilepsy Attitude Scale (EAS). Results: The midwifery students had total mean scores of 49.69±13.25, 7.71±3.69, and 54,87±8.13 for the HFS, EKS, and EAS, respectively. It was found that those who had social contact with epilepsy patients had significantly higher EKS and EAS scores, but no correlation with HFS. Conclusion: The study of midwifery students in Eastern Turkey shows that close contact with epilepsy patients is associated with better knowledge of and attitude to epilepsy, although the high health fatalism remains.

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“…Such observations underscore how epilepsy is predominantly regarded in terms of its psychosocial dimensions rather than just its medical aspects. In essence, psychosocial challenges amplify the burden experienced by patients, alongside the medical problems they face [6]. Patient-related sociodemographic and clinical factors, coupled with incorrect handling during seizures, lack of accurate information, and perpetuated societal misconceptions, contribute to a sense of stigmatization and subsequent social isolation among individuals with epilepsy [7].…”

Section: Introductionmentioning

confidence: 99%

Stigma and psychosocial problems in patients with epilepsy

Yeni

2023

Explor Neurosci

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Epilepsy, a prevalent neurological disorder, is characterized by chronic seizures resulting from abnormal electrical activity in the brain. Adequate medical treatment allows roughly 70% of patients to enjoy a seizure-free life. However, throughout history, epilepsy has acquired diverse interpretations due to the experienced seizures, transforming the condition from a clinical issue into a social stigma. Therefore, the aim of this review study is to review stigma and psychosocial problems in patients with epilepsy (PwE). For this reason, this study utilises sources from the last ten years and reports current data. As a result of the review, it was found that societal discrimination in PwE arises primarily from inadequate knowledge, misconceptions, and negative attitudes toward the condition. Other contributing factors were include patients’ lower levels of education and income, frequent seizures due to inadequate treatment, age at onset, duration of the disease, depressive symptoms, and lack of social support. Also, it was found that the stigma individuals with epilepsy face plays a pivotal role in exacerbating their psychosocial problems. Unfortunately, stigma and psychosocial challenges appear to be in a vicious circle, with an increase in one increasing the other. Stigmatized patients tended to isolate themselves from society, further increasing their likelihood of experiencing a depressive mood or psychiatric comorbidity. Consequently, individuals with epilepsy encounter difficulties in various domains such as marriage, work, education, and personal life. Considering these significant psychosocial burdens, it is essential to recognize that epilepsy surpasses its medical implications. Unfortunately, current efforts to reduce stigma remain insufficient, necessitating urgent and comprehensive measures to address this issue.

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Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence

Cited by 31 publications

References 82 publications

Chronic illness and disability among sexual minority persons: Exploring the roles of proximal minority stress, adaptation, and quality of life.

Chronic illness and disability among sexual minority persons: Exploring the roles of proximal minority stress, adaptation, and quality of life.

Evaluation of midwifery students’ health fatalism, knowledge, and attitudes toward patients with epilepsy in Eastern Turkey

Stigma and psychosocial problems in patients with epilepsy

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