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To tell or not to tell? Perceptions about the stigma of patients with epilepsy in different situations

Grant number: 17/10550-9
Support Opportunities:Scholarships in Brazil - Scientific Initiation
Effective date (Start): October 01, 2017
Effective date (End): December 31, 2018
Field of knowledge:Health Sciences - Medicine
Principal Investigator:Li Li Min
Grantee:Carolinne Yuri Tagami
Host Institution: Faculdade de Ciências Médicas (FCM). Universidade Estadual de Campinas (UNICAMP). Campinas , SP, Brazil
Associated research grant:13/07559-3 - BRAINN - The Brazilian Institute of Neuroscience and Neurotechnology, AP.CEPID


Epilepsy imposes a great psychosocial burden not only on the patient but also on the family and society. Often, people with epilepsy do not reveal the diagnosis, since sharing about their condition can lead to discrimination and social isolation. Stigma, as defined by Goffman, is "the situation of the individual who is disqualified from full social acceptance," related to the distance between virtual social identity (assumptions of others in relation to an individual) and real social identity (attributes that Individual has). These concepts influence the construction of personal identity. For patients with epilepsy, whether or not to disclose information about epilepsy is related to the likelihood of how much it modifies their personal identity in time and space. The quantity and quality of social interaction are directly related to the quality of life of patients with epilepsy, which can be reduced due to stigma. However, it is unclear whether social interactions occur in a total open about having epilepsy, or the patients hide their diagnosis. In that sense, it is important to understand situations in which patients with epilepsy are more at ease or not about their willingness to reveal about their epilepsy. Our hypothesis is that patients report on epilepsy depending on the social situation they are in. Objective: The objective of this study is to evaluate in which social situations the person with epilepsy would feel at ease to reveal their condition or would prefer to hide it. Method: We will carry out a qualitative and quantitative survey through the application of a questionnaire adapted from the Troster study (1997 ). This questionnaire describes six different scenarios for possible disclosure: "(a) a random contact with a stranger on a bus, (b) a pleasant evening with an old friend, (c) a social evening during which new members of a (D) a family reunion in which the future father-in-law is known; (e) an employment interview with a superior, and (f) a multi-day visit by a close relative. "[3] The addition of two scenarios "(g) In social media and (h) In school". In these scenarios, patients will be questioned about the likelihood that they will disclose their condition to their specific interaction partner; Classify on a 6-point scale: "by no means" (0), "most likely not" (1), "probably not" (2), "probably yes" . This research will be carried out at the Neurology Outpatient Clinic of a University Hospital (Phase I) and by electronic means (Phase II). Relevance: Situations that bring discomfort when talking about epilepsy may also be related to sense or imposed stigma. Understanding stigma related to the situation may lead to the development of strategies to minimize the impact of stigma that could result in social isolation (AU)

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