An exploration of the experiences of self-disgust in people with epilepsy.

AIM: To explore the experiences of self-disgust in people with epilepsy and their understandings about this. DESIGN: A qualitative study informed by thematic analysis. METHOD: Ten adults (out of 43 individuals initially interested in taking part, with 38 of those with levels of self-disgust categorised as high) with epilepsy and uncontrolled seizures were recruited online and participated in a telephone semi-structured interview. RESULTS: Three themes illustrated the development and experiences of self-disgust in adults with epilepsy and uncontrolled seizures, and how participants attempted to manage this. The first theme described the development of self-disgust as a result of the physical manifestations of seizures but also the experiences of others' disgust reactions to seizures and an expectation of rejection. The second theme described the enduring and often unescapable experiences of self-disgust, with the final theme illustrating how participants attempted to manage experiences of self-disgust, particularly through avoidance. DISCUSSION: This study was the first to explore qualitatively the experiences of self-disgust in people with epilepsy. People with epilepsy experience disgust in reaction to the physical symptoms of seizures and these disgust-based feelings appeared to become internalized following others' disgust reactions. Avoidance as a strategy to manage self-disgust could be protective but might have inadvertently maintained feelings of self-disgust.

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

OBJECTIVE: Stigma is reported to cause as much distress and effect on quality of life for individuals with epilepsy as the physical symptoms of seizures. Existing quantitative reviews have focused on describing levels of stigma in epilepsy, but no qualitative review has been undertaken despite the increasing number of relevant studies. We provide a qualitative synthesis to aid the understanding of stigma experiences in adults with epilepsy across different sociocultural contexts. METHODS: A systematic database search yielded an initial set of 3,032 relevant papers, of which 28 were included. A meta-synthesis was conducted according to a meta-ethnographic approach which has been adapted for health research. RESULTS: Five themes were generated: 1) Societal negative perceptions of epilepsy result in discrimination and rejection; 2) Internal attributions of blame lead to negative self-perception and shame; 3) Stigma impacts everyday life and contributes to reliance on others; 4) Stigma is managed through concealment and avoidance; 5) Support from others is beneficial but dependant on own and others' understandings of epilepsy. These themes highlighted the key individual experiences of epilepsy stigma, which appeared to some degree culture-specific. Culturally-informed misconceptions of epilepsy were readily internalised, resulting in emotional challenges and affecting participants' lives. Strategies for coping with this were also described. SIGNIFICANCE: This synthesis characterised the experiences of stigma among adults with epilepsy and highlighted key similarities and differences in these experiences across sociocultural contexts. Educational programmes to inform communities about epilepsy hold importance going forward.

A feasibility study of a brief psycho-educational intervention for psychogenic nonepileptic seizures.

PURPOSE: We have previously reported that one in six patients stops experiencing psychogenic nonepileptic seizures (PNES) following our communication protocol. This prospective multicentre study describes a psycho-educational intervention for PNES building on the initial communication of the diagnosis and examines the feasibility of its delivery by healthcare professionals with minimal experience in psychological therapies. METHOD: Three healthcare professionals with minimal training in psychological therapies took part in a one-day training course. 20 participants attended for a four-session manualised psycho-educational intervention delivered at three different clinical neuroscience centres. Participants completed self-report measures prior to the intervention at baseline (n=29) and seven months after diagnosis (n=13) measures included seizure frequency, health related quality of life, healthcare utilisation, activity levels, symptom attributions and levels of functioning. Therapy sessions were audiorecorded and manual adherence assessed. RESULTS: Of 29 patients enrolled into the study, 20 started and 13 completed the intervention and provided follow-up information. At follow-up, 4/13 of patients had achieved complete seizure control and a further 3/13 reported a greater than 50% improvement in seizure frequency. After training, epilepsy nurses and assistant psychologists demonstrated sufficient adherence to the manualised psycho-educational intervention in 80% of sessions. CONCLUSION: The delivery of our brief manualised psycho-educational intervention for PNES by health professionals with minimal training in psychological treatment was feasible. The intervention was associated with higher rates of PNES cessation than those observed in our previous studies describing the short-term outcome of the communication of the diagnosis alone. An RCT of the intervention is justified but a significant proportion of drop-outs will have to be anticipated.

Understanding patient perceptions following a psycho-educational intervention for psychogenic non-epileptic seizures.

This study formed part of an evaluation of a brief educational intervention for patients with psychogenic non-epileptic seizures (PNES). The sessions provide information, seizure control techniques and management planning. The qualitative component of the research reported here aimed to provide insight into the participants' perceptions following the intervention. Semi-structured interviews were conducted with twelve patients. Interviews were tape-recorded, transcribed and analyzed, using principles of thematic analysis. Six key themes were identified: getting answers; understanding the link with emotions; seeking a physiological explanation; doubting the diagnosis; the role of medication; and finding a way forward. The findings highlight considerable individual variation in response, with evidence of changed perceptions or enhanced understanding in some patients while others continued to seek answers or explanations about the cause of their seizures. There were no clear links between reported improved understanding or acceptance of the diagnosis and a perceived improvement in the condition.

Recent progress in the understanding and treatment of nonepileptic seizures.

PURPOSE OF REVIEW: There has been a steady increase in the number of publications about (psychogenic) nonepileptic seizures (NES) over the past two decades. This review focuses on work published in the past 3 years. It summarizes the most important developments in terms of diagnosis, cause, clinical manifestations and treatment of NES. RECENT FINDINGS: Several recent studies demonstrate the scope and limitation of questionnaire-based and conversation analytic approaches to the differential diagnosis of epilepsy and NES. Experimental work has revealed that patients with NES have increased levels of physiological arousal at rest which are associated with abnormal mental processing. There is a growing understanding of the meaning and clinical significance of the heterogeneous manifestations of NES. Several studies document the therapeutic potential of an early and effective communication of the diagnosis of NES. A number of randomized controlled or uncontrolled long-term follow-up pilot studies suggest that different forms of psychotherapy are effective for NES. SUMMARY: Recent research has improved our understanding of NES as a biopsychosocial disorder. Clear diagnostic and management pathways for patients with NES are likely to emerge in the near future.

Management of patients with nonepileptic attack disorder in the United Kingdom: a survey of health care professionals.

Nonepileptic attack disorder (NEAD) is one of the commonest differential diagnoses of epilepsy. A number of approaches to the communication of this diagnosis and its treatment have been described; however, there are currently no evidence-based management pathways. This study captures the care currently received by patients with NEAD in the United Kingdom and Ireland. The findings are based on 130 responses to an Internet survey of clinicians from the United Kingdom and the Republic of Ireland (65.6% neurologists). The responses indicate that there is much variability in the approaches to diagnosis of NEAS and communication of the diagnosis to the patient. Although there is good access to diagnostic equipment, 30% of diagnoses are made on clinical grounds alone. While 93% of respondents endorsed psychological treatment as the treatment of choice, only 35% were able to refer all of their patients for this treatment and 15% were unable to refer any patients.

Long-term outcome of brief augmented psychodynamic interpersonal therapy for psychogenic nonepileptic seizures: seizure control and health care utilization.

PURPOSE: Most neurologists endorse psychotherapy as the treatment of choice for psychogenic nonepileptic seizures (PNES), but its effectiveness remains unproven, and there are no previous reports of long-term outcome after psychotherapy. This study aimed to establish the outcome of brief augmented psychodynamic interpersonal therapy (PIT) for 47 patients with PNES in terms of seizures and health care utilization 31-65 months (median 50 months) after diagnosis. METHODS: Participants completed questionnaires before starting therapy (Clinical Outcomes in Routine Evaluation Outcome Measure [CORE-OM]; Patient Health Questionnaire [PHQ15]; Short-Form Health Survey [SF-36]). Forty-seven of 66 consecutive patients (71%) also completed a follow-up questionnaire about current seizure frequency, employment status, and health care utilization 42 months after the end of therapy (range 12-61 months). Factors associated with seizure outcome and predictors of seizure cessation were evaluated. RESULTS: At follow-up, 25.5% of patients had become seizure-free; a further 40.4% achieved a seizure reduction of >50%. Logistic regression showed "economic activity" status to be the only significant baseline predictor of seizure cessation (p < 0.021). Health care utilization declined significantly from baseline to follow-up (p < 0.039), suggesting minimum expected annual health care expenditure savings of pound245 ($408). DISCUSSION: These results indicate that this intervention is associated with a significant improvement in seizure frequency and health care utilization, suggesting that a randomized controlled study of the intervention is justified.

Acceptability and effectiveness of a strategy for the communication of the diagnosis of psychogenic nonepileptic seizures.

PURPOSE: Communicating the diagnosis of psychogenic nonepileptic seizures (PNES) is a challenging task. This study was carried out to assess the acceptability and effectiveness of a new communication procedure consisting of a patient information leaflet and a communication strategy for neurologists. METHODS: In a multicenter prospective study, 50 patients newly diagnosed with PNES were informed about the diagnosis by 10 different neurologists using the communication procedure. Follow-up data were gathered by telephone interview and completion of a questionnaire about symptom attributions (psychological/physical) and illness cognitions (Illness Perception Questionnaire-Revised, IPQ-R). RESULTS: Ninety-four percent of patients found the leaflet easy to understand. Ninety-four percent stated their questions were answered by the doctor; 70% got what they wanted from the consultation; only 4% reported feeling angry during the consultation. Eighty-six percent of patients acknowledged that psychological factors were at least contributing to their seizures. On the IPQ-R, "emotional" causes for the seizures were endorsed more commonly than "nonemotional" causes (p < 0.001). After 3 months, 14% of patients were seizure-free and 63% reported a >50% reduction in seizure frequency. DISCUSSION: We conclude that our procedure is acceptable and effectively communicates a psychological etiologic model for PNES.

Psychogenic nonepileptic seizures and health-related quality of life: the relationship with psychological distress and other physical symptoms.

This study explores the relationship between the frequency of psychogenic nonepileptic seizures (PNES) and health-related quality of life (HRQoL), as well as the effect of psychological distress and other physical symptoms on this relationship. Data were collected on 96 patients with PNES. Correlations of seizure frequency with HRQoL, psychological distress, and physical symptoms were computed. Partial correlations of seizure frequency with HRQoL while controlling for psychological distress and physical symptoms were also computed. Seizure frequency was found to be significantly related to subjective HRQoL, although the relationship with HRQoL was rendered nonsignificant when the effects of psychological distress and the number of other physical symptoms were taken into account. The results of this study suggest that summary scores of HRQoL are not independently related to frequency of PNES and that there is a close association between PNES frequency, levels of psychological distress, and number of other physical symptoms experienced.