The Stigma of Epilepsy: A European Perspective

Baker, Gus A.; Brooks, Jayne; Buck, Debbie; Jacoby, Ann

doi:10.1111/j.1528-1157.2000.tb01512.x

Cited by 320 publications

(251 citation statements)

References 26 publications

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“…The initial diagnosis of epilepsy can cause adjustment disorders, refractory epilepsy can challenge coping resources, and epilepsy can give rise independence and social functioning [2][3][4]. Having epilepsy is associated with perceived stigma, especially in the presence of comorbid mood disorders and low self-esteem [5,6]. This means that there are many aspects of living with epilepsy, which could be considered targets for psychological treatment.…”

Section: Introductionmentioning

confidence: 99%

A prospective service evaluation of acceptance and commitment therapy for patients with refractory epilepsy

Dewhurst

Nováková

Reuber

2015

Epilepsy & Behavior

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Objective: The aim of this service evaluation was to explore the effectiveness of a psychotherapeutic treatment for patients with epilepsy based on the Acceptance and Commitment Therapy (ACT) approach and to assess whether this treatment is likely to be cost-effective. Method:We conducted an uncontrolled prospective study of consecutive patients with refractory epilepsy referred for outpatient psychological treatment to a single psychotherapist because of emotional difficulties related to their seizure disorder. Participants were referred by consultant neurologists, neuropsychologists or epilepsy nurses and completed a set of validated self-report questionnaires (Short Form -12 Version 2, Generalised Anxiety Disorder -7, Neurological Disorders Depression Inventory for Epilepsy, Work and Social Adjustment Scale, and Rosenberg Self-Esteem Scale) at referral, the end of therapy and six months post therapy. Patients received a maximum of 20 sessions of one-to-one psychological treatment supported by a workbook. Cost-effectiveness was estimated based on the calculation of quality-adjusted life year (QALY) gains associated with the intervention.Results: Sixty patients completed the pre-and post-psychotherapy questionnaires, 41 also provided six-month follow-up data. Patients received six to 20 sessions of psychotherapy (mean = 11.5, S.D. = 9.6). Psychotherapy was associated with significant medium to large positive effects on depression, anxiety, quality of life, self-esteem, work and social adjustment (Ps < .001), which were sustained six months after therapy. The mean cost of the psychotherapy was £445.6 and, assuming that benefits were maintained for at least six months after the end of therapy, the cost per QALY was estimated to be £11,140 ( 9, $18,016; the cost per QALY would be half this amount if the benefits lasted one year). Conclusion:The findings of this pilot study indicate that the described psychotherapeutic intervention may be a cost-effective treatment for patients with epilepsy. The results suggest that randomised controlled trial of the psychotherapy programme is justified.

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Section: Introductionmentioning

confidence: 99%

A prospective service evaluation of acceptance and commitment therapy for patients with refractory epilepsy

Dewhurst

Nováková

Reuber

2015

Epilepsy & Behavior

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“…The risk for psychiatric disorders in people with epilepsy have been reported to be three to six times higher than observed in age matched apparently healthy population [1,15,18]. It has also been documented that children and adolescents with epilepsy experience more emotional and behavioural problems than healthy controls and others with chronic conditions [9][10][11][12][13][14][15][16][17][18][19][20][21][22][23][24][25][26].…”

Section: Introductionmentioning

confidence: 96%

“…Both epilepsy and depression are characterized by a chronic course and poor long-term psychosocial outcome [2]. Authors have identified psychiatric syndromes such as anxiety, depression, and behavioural affective and conversion disorders in people with epilepsy [8][9][10][11][12][13][14][15][16][17][18]. The risk for psychiatric disorders in people with epilepsy have been reported to be three to six times higher than observed in age matched apparently healthy population [1,15,18].…”

Section: Introductionmentioning

confidence: 99%

Psychosocial Correlates of Depression in Children and Adolescents with Epilepsy in a Nigeria Neuro-Psychiatric Hospital

OC¹,

CA²,

OA³

et al. 2012

J Clin Case Rep

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“…Stigma researchers have Open Journal of Psychiatry generally characterized stigma as either felt or enacted [11] [12]. Enacted stigma manifests as discrimination against the stigmatized person imposed by others, whereas felt stigma is the fear of enacted stigma experienced by the stigmatized person [10]. Felt stigma may result in the stigmatized person intentionally avoiding contact with others in an attempt to avoid enacted stigma [17].…”

Section: Introductionmentioning

confidence: 99%

“…Misinformation and negative attitudes towards epilepsy contribute to the manifestation of discrimination against individuals with the condition [8]. The stigma associated with epilepsy impacts negatively on the quality of life of the sufferers [1] [9] [10]. However, the extent and the manifestations of stigma vary from one locality to another as well as with clinical contexts and social status of the individual [2] [11] [12].…”

Section: Introductionmentioning

confidence: 99%

The Stigma of Epilepsy among Outpatients in a Tertiary Hospital in South-East Nigeria

Achor¹,

Ezeala-Adikaibe²,

Obayi³

et al. 2017

OJPsych

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Background: The stigma of epilepsy is pervasive in developing country contexts and negatively affects the psychological and social wellbeing of its sufferers. The experience of stigma varies across settings and probably relate to disease severity and social characteristics. This study sought to describe the extent and correlates of perceived and enacted stigma among outpatients with epilepsy. Methods: The participants were consecutively presenting epilepsy outpatients in a tertiary facility that attended clinic regularly and had no overt medical or psychiatric co-morbidities. The patients were interviewed with a semi-structured questionnaire. Results: There were 93 participants with a mean age of 30.2 ± 10.3 years and 57.0% were males. The experience of stigma was reported by 46.2% and 67.7% of the participants for perceived and enacted stigma, respectively. Over one-third of the patients had suffered burns or a similar injury in the past. The correlates of perceived stigma were rural residence, lower levels of education, and longer duration of illness. Gender, age and frequency of seizures were not statistically significant determinants. The correlates of enacted stigma were being single, older age, rural residence, and longer duration of epilepsy. A past history of burns and disclosure of epilepsy to individuals outside the family added to the likelihood of experiencing stigma. Conclusion: The burden of epilepsy related social stigma is high in Nigeria. Cultural stereotypes and misconception add to this. There is need for appropriate culture-congruent educational interventions to provide the right information about epilepsy and debunk the misconceptions and myths associated with the condition. This will need to be coupled with astute clinical management of cases and active case finding. Both qualitative and longitudinal quantitative studies would be required to deepen our understanding of the How to cite this paper: Achor, J.U.,

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The Stigma of Epilepsy: A European Perspective

Abstract: Summary:Purpose: To study the stigma of epilepsy in a European sample.Methods: Clinical and demographic details and information about patient-perceived stigma was collected by using selfcompleted questionnaires mailed to members of epilepsy support groups.

Cited by 320 publications

References 26 publications

A prospective service evaluation of acceptance and commitment therapy for patients with refractory epilepsy

A prospective service evaluation of acceptance and commitment therapy for patients with refractory epilepsy

Psychosocial Correlates of Depression in Children and Adolescents with Epilepsy in a Nigeria Neuro-Psychiatric Hospital

The Stigma of Epilepsy among Outpatients in a Tertiary Hospital in South-East Nigeria

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