The association of stigma with self-management and perceptions of health care among adults with epilepsy

DiIorio, Colleen; Shafer, Patricia Osborne; Letz, Richard; Henry, Thomas R.; Schomer, Donald L.; Yeager, Katherine A.

doi:10.1016/s1525-5050(03)00103-3

Cited by 187 publications

(164 citation statements)

References 18 publications

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“…Employment, apart from its economic value to the individual, enhances social acceptance and leads to self-worth. One's belief in one's capabilities has been shown to predict positive health-related behaviors in individuals with epilepsy (Amir et al 1999;DiIorio et al, 2003).…”

Section: Discussionmentioning

confidence: 99%

Women with Onset of Epilepsy Prior to Marriage: Disclose or Conceal?

et al. 2007

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Summary:We inquired reasons for concealment/disclosure of the history of epilepsy during marriage negotiations and marriage outcomes of 82 consecutive women attending a tertiary referral center based epilepsy clinic in Kerala, southern India. At the time of marriage, 55% concealed and 45% disclosed the history of epilepsy. Majority of those who concealed admitted that they did so fearing breakup of marriage negotiations, and majority of those who disclosed did so to forestall the consequences after marriage of concealing. Compared to those who disclosed, the prevalence of divorce, separation and disturbed marriages were significantly higher among those who concealed. Honest prospective communication during marriage negotiations about epilepsy is important for preserving subsequent married life. Key Words: Concealment-DisclosureEpilepsy-India-Marriage.The psychosocial consequences of the stigma potentials of epilepsy are nowhere more evident than in the case of women with epilepsy of the marriageable age in a developing country. Unlike in western culture, in most Asian countries, it is the responsibility of the parents to find a suitable match for their daughter and arrange her marriage (Huang, 2005). Parents of a woman with epilepsy often get her married, without informing the spouse and family of the disease (Kleinman et al., 1995;Agarwal et al., 2006). Seizure exacerbation often occurs soon after marriage due to noncompliance to medication. Divorce ensues when the presence of epilepsy becomes evident (Kleinman et al., 1995;Wada et al., 2004;Agarwal et al., 2006).In India, and perhaps in other developing countries too, one of the most frequently asked questions by the parents of a woman of marriageable age during medical consultation is whether they should reveal or conceal the history of epilepsy during marriage negotiations. Some of them would mention that the disclosures had resulted in several broken negotiations. Despite its enormous medical and social implications, little information is available to guide the clinician to answer this question. Through a questionnaire survey, we investigated the prevalence of concealment/disclosure of the history of epilepsy and its consequences on the married life of women with epilepsy in Kerala, southern India. SUBJECTS AND METHODSWe recruited 82 consecutive married women attending the epilepsy clinic of the Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum, Kerala, who had active epilepsy for 5 years or more prior to and after marriage. We excluded patients with concomitant physical handicap, intellectual impairment, psychiatric disturbances, or pseudoseizures. We defined active epilepsy if the woman had at least two epileptic seizures per year during the previous 10 years, regardless of the antiepileptic drug treatment status. The survey questionnaire inquired demographic and clinical features and contained 10 close-ended questions related to the subject of this study (Table 1). We used mean, median, standard deviation, and percentages to s...

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Section: Discussionmentioning

confidence: 99%

Women with Onset of Epilepsy Prior to Marriage: Disclose or Conceal?

et al. 2007

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“…Dez artigos quantificaram as crises epilépticas. 1,3,4,8,10,13,14,24,26,38 Por questões metodoló-gicas, não é possível comparar a freqüência das crises entre os estudos. Cabe ressaltar que na maioria dos estudos, o grupo mais representativo de PCE apresentava uma ou mais crises por ano.…”

Section: Métodosunclassified

Pacientes com epilepsia: satisfação com os serviços de atenção à saúde?

Müller

Gomes

2008

J. epilepsy clin. neurophysiol.

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RESUMOIntrodução: A avaliação da qualidade dos serviços de saúde sob a ótica dos pacientes com epilepsia (PCE) pode ser uma ferramenta importante para organização e promoção do sistema de saúde. Objetivos: Avaliar e apresentar alguns aspectos sobre a satisfação do PCE com os serviços de saúde: satisfação geral, grau de informação sobre epilepsia e sua comunicação oferecida pelos profissionais de saúde, preferências pelo atendimento no setor primário ou pelo hospitalar, acessibilidade às consultas, eficácia do tratamento (freqüência das crises epilépticas) e medidas de melhoria do serviço com enfoque no uso de enfermeiras especializadas em epilepsia. Métodos: Foi realizada uma revisão sistemática baseada em artigos selecionados segundo os objetivos e captados nos bancos bibliográficos Pubmed e Science Direct. Resultados: Na maioria dos estudos, foram encontradas avaliações no geral positivas ao atendimento. No entanto, em quase todos existem críticas específicas, como a falta de comunicação, atendimento não compartilhado pelo setor primário e especializado, acessibilidade deficiente às consultas e a falta de continuidade do tratamento. Conclusão: Na tentativa de prover uma melhoria do atendimento aos PCE é fundamental conhecer as suas perspectivas, percepções, preferência e necessidades.Unitermos: Epilepsia, paciente, satisfação, perspectiva, visões, necessidades, avaliação dos serviços de atenção à saúde. ABSTRACTPatient with epilepsy: Satisfaction with the health care system? Introduction: The evaluation of the quality of the health care under the patients with epilepsy (PWE) view can be an important tool for the organization and promotion of the health care system. Objective: To evaluate and to present some aspects of the of the PWE satisfaction regarding the health care system services: general satisfaction, degree of information about epilepsy and its communication offered by the health care workers, preferences for the service in the primary health care or for the hospital care, accessibility to the consultations, effectiveness of the treatment (frequency of the epileptic seizures) and measures of improvement of the service with focus in the specialized nurses' work in epilepsy. Methods: A systematic review was carried out based on papers searched according to the objectives and obtained in the bibliographical banks Pubmed and Science Direct. Results: In most of the studies, they were found evaluations in the general positive to the services. However, in almost all specific criticisms exist, as the communication lack, services not shared by the primary and specialized health care, insufficient accessibility to the consultations, and the lack of continuity of the treatment. Conclusion: In the attempt of providing an improvement of the service to PWE is fundamental to know their perspectives, perceptions, preference and needs.

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“…School going children also suffer due to lack of knowledge and improper attitude of teachers towards epilepsy [8,9]. This causes banishment of such individuals and these patients are forced to suffer from isolation, disgrace and low self-esteem,particularly in developing countries and lower class societies where a general misperception of epilepsy prevails [6,10].…”

Section: Introductionmentioning

confidence: 99%

Awareness and Knowledge on Epilepsy Among Undergraduate Medical Students in Pakistan

Ahmed

Ahmed²,

Ramzan³

et al. 2015

Int Arch Med

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Background: Epilepsy is a common neurological disorder which affects millions of people throughout the world. However, it has been discovered that there is a great degree of ignorance regarding the science of epilepsy among the general masses as well as the populace of medical students. Studies have been conducted whose results have shown that, there has been fabrication regarding the clinical presentation & treatment of epilepsy among the common man. Numerous appear to link epilepsy to evil spirits and possession that can be healed by spiritual treatments by certain specialists given the designations of 'demonologists', 'paranormal investigators' or 'mystics'. In such circumstances, medical students can prove to be a major source to educate the society at large. Therefore, it is crucial that their knowledge & attitude towards epilepsy is accurate and thus, must be evaluated at an early stage in their medical career, so that these future physicians may play a pivotal role in the public awareness of epilepsy. Method:This study was conducted in Pakistan, at a Government sector medical college, namely, Karachi Medical and Dental College. This is a cross-sectional study. Data was collected between October to December of the year 2014. 270 medical students were given the KAP (knowledge, attitude & practice) form of epilepsy to fill out. The software used to interpret and tabulate the results was SPSS v.16 for Windows. The chi-square test was employed to determine the proportion of knowledge of epilepsy among medical students. The p-value calculated was equal to 0.05. Findings:In this study, 270 medical students were recruited, of which 90 were males (33.3%) where as 180 were females (66.6%). The ages of the student participants were within the range of 18 This article is available at: www.intarchmed.com and www.medbrary.com 2 to 24 years. The analysis of our study demonstrates that: 85.1% of the medical students consider epilepsy to be a neurological disorder; 6.66% believe epilepsy is an infectious disease; 4.44% believe it to be a hereditary disease, whereas, 3.7% of the students reckon it is a psychiatric illness. Generalized tonic clonic seizures was deemed to be the most common form of epilepsy (25.5%) with complex partial seizures being the least common form (1.85%), as well as relatively unknown by the students.It was discovered through this study that, students were much less acquainted with the knowledge regarding the treatment of the disorder: multiple drug therapy was considered as the treatment by 56.66% of the students, spiritual treatment by 3.7%, spiritual treatment with medication by 20%, surgical treatment by 17.4% & 2.22% deemed epilepsy as a self limiting disease. Conclusion:It has been observed with this survey that the medical students of Pakistan are well aware of the knowledge of epilepsy and it being a medical condition. However, the students need to be educated early on in their training to be physicians, about certain aspects and details of the neurological disorder, for instance, th...

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The association of stigma with self-management and perceptions of health care among adults with epilepsy

Cited by 187 publications

References 18 publications

Women with Onset of Epilepsy Prior to Marriage: Disclose or Conceal?

Women with Onset of Epilepsy Prior to Marriage: Disclose or Conceal?

Pacientes com epilepsia: satisfação com os serviços de atenção à saúde?

Awareness and Knowledge on Epilepsy Among Undergraduate Medical Students in Pakistan

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