Psychosocial Impact Of Epilepsy Research Articles

Exploration of health care providers' knowledge-based care and support given to family members and caregivers of people living with epilepsy.

In South Africa, approximately half a million individuals live with epilepsy. This means that half a million families and caregivers are impacted by epilepsy, with a limited number of healthcare providers responsible for treating people living with the condition, as well as their families and caregivers. This study explored the knowledge-based care and support healthcare providers give families and caregivers. Fifteen participants were purposefully selected from Limpopo and Mpumalanga provinces to participate in the study. Data were collected via an open-ended interview guide divided into two sections: Section A comprised sociodemographic questions, and Section B had questions on epilepsy care and support. Four of the participants were male, and 11 were female, seven were community health workers, five were nurse practitioners, and three were auxiliary nurses. Seven had a grade 12 qualification or lower, and only six had a degree. The data collected was analyzed using thematic analysis, coded by the researcher and co-coded by an independent expert. Two themes emerged from the raw data: epilepsy knowledge and epilepsy support and counselling. From these two themes, three subthemes were identified: psychosocial impact of epilepsy, epilepsy-related training, and counselling and support. The study revealed a gap in professional capacity building and highlighted the need for intentional knowledge sharing and equipping of healthcare providers. The findings suggest that equipping community health workers, in particular, may be a better and more efficient way to increase the quality of life for families and caregivers and people living with epilepsy in South Africa.

Genetic attribution and perceived impact of epilepsy in multiplex epilepsy families.

Studies have found that affected individuals who believe the cause of their disorder is genetic may react in various ways, including optimism for improved treatments and pessimism due to perceived permanence of the condition. This study assessed the psychosocial impact of genetic attribution among people with epilepsy. Study participants were 165 persons with epilepsy from multiplex epilepsy families who completed a self-administered survey. Psychosocial impact of epilepsy was assessed with the Impact of Epilepsy Scale, containing items about relationships, employment, overall health, self-esteem, and standard of living. Genetic attribution was assessed using a scale derived from three items asking about the role of genetics in causing epilepsy in the family, the chance of having an epilepsy-related mutation, and the influence of genetics in causing the participant's epilepsy. We estimated prevalence ratios (PRs) for impact of epilepsy above the median using Poisson regression with robust standard errors, adjusting for number of lifetime seizures and time since last seizure. Participants' age averaged 51years; 87% were non-Hispanic white, 63% were women, and 54% were college graduates. The genetic attribution scale was significantly associated with having a high impact of epilepsy (adjusted PR = 1.4, 95% confidence interval = 1.07-1.91, P=.02). One of the three genetic attribution questions was also significantly associated with a high impact of epilepsy (belief that genetics had a big role in causing epilepsy in the family, adjusted PR=1.8). These findings reflect an association between the psychosocial impact of epilepsy and the belief that epilepsy has a genetic cause, among people with epilepsy in families containing multiple affected individuals. This association could arise either because belief in a genetic cause leads to increased psychosocial impacts, or because a greater psychosocial impact of epilepsy leads some to believe their epilepsy is genetic.

The psychosocial impact of epilepsy on marriage: A narrative review.

There have been many studies exploring quality of life as well as the impact of epilepsy on the affected individual. However, epilepsy affects more than the patients themselves, and there seems to be a paucity of data regarding the impact of epilepsy beyond the person with epilepsy (PWE). In particular, it is uncertain what the impact of epilepsy on marriage may be. We therefore performed a narrative review to evaluate work measuring the psychosocial effect of epilepsy on marriage. We reviewed the literature on epilepsy and marriage by searching PubMed (Medline) and EMBASE and thoroughly examining relevant bibliographies. Forty-two papers were identified that addressed the issue of the psychosocial effect of epilepsy on marriage. The different approaches used to assess the impact of epilepsy on marriage can be broadly grouped into three categories: assessment of the social effect of living with epilepsy, which includes the marital prospects of PWEs and how changes in martial status associate with seizure frequency; assessment of quality of life (QOL) of PWEs; assessment of the association of social support with the disease burden of epilepsy. Within each of these approaches, different research methods have been employed including questionnaires, qualitative methods, and scales. The studies reviewed indicate that epilepsy has a severe impact on individuals and their families. While many quality-of-life surveys do comment on the marital status of the patient, there is little expansion beyond this. The impact that seizures may have on the partner of a patient with epilepsy is barely addressed. With increasing incidence of epilepsy in older populations, potential changes in the dynamic of a long-term marriage with the development of epilepsy in older age are not known. Similarly, the impact of marriage on concordance with medication or proceeding to, for example, surgical treatment for pharmacoresistant epilepsy has not been studied in detail. We suggest ways in which to address these aspects in order to better deliver holistic care to patients with epilepsy and their partners.

Psychosocial Impact of Epilepsy in Older Adults.

Objective: The purpose of our study was to describe the quality of life of older adults with seizures or epilepsy and compare its psychosocial impact between those who were new diagnosed and those diagnosed before the age of 65. Methods: In-depth face to face interviews with open ended questions were conducted with two participant groups: Incident group: 42 older adults (>65 years) with new onset or newly diagnosed after age of 65; and Prevalent group: 15 older adults (>65 years) diagnosed before age of 65. Interviews were reviewed and coded using a list of themes and results were compared between the two groups. Eight topics were selected from the participants’ responses to questions about the psychosocial impact of epilepsy and seizures. The topics were then analyzed and compared between the two groups. Results: The topics analyzed were: Emotional and physical impact, significant life changes, co-morbidities, information gathering, stigma, AED side effects, changes in relationships and attitude toward diagnosis. Conclusion: We concluded that the age at onset and duration does seem to have a negative correlation with health related quality of life. However, the perceived health status of older adults with chronic epilepsy was significantly better and reflected in their more positive approach to the diagnosis of seizures or epilepsy probably because they have had a longer opportunity to learn to cope with their diagnosis.

The Psychosocial Impact of Epilepsy; A Study on Adult People With Epilepsy Attending Clinics In Lusaka

Background: Epilepsy is a chronic disease that affects different aspects of life. Few studies have measured, using validated scales, the psychosocial impact of epilepsy in a general practice setting in Zambia. Aim: To find out the quality of life in PWE attending clinics in Lusaka, and to find out various factors affecting them Method: A survey was undertaken of 50 subjects, with generalized or partial epileptic seizures aged 18 years or more and drawn from epilepsy clinics in Lusaka. The outcome measure was the SF-31(Quality of Life in Epilepsy Inventory-31). Results: 38% of persons with active epilepsy had significantly low QOL due to their condition. Females had lower QOL scores than males. Patients with higher levels of education had higher scores than their counterparts with lesser education. People who had been ill for greater than 5 years had higher scores than those who had been ill for a shorter duration. Those whose caregivers had a high income from salary job had higher scores than those whose caregivers were unemployed. Conclusion: The occurrence of seizures, even at low frequencies, is associated with psychosocial handicap, and this may remain covert in general practice. Increased impairment in QOL was observed in female, less educated patients with recent onset of seizures, and unemployed caregivers. Poor QOL in epilepsy reflects social underachievement and calls for programs to remedy their psychosocial circumstance and improve health service provisions.

Caring for children and adolescents with epilepsy: Creating an innovative electronic educational resource

The majority of children and adolescents with epilepsy are managed in the community setting by general paediatricians. However, there is a paucity of practical, relevant information and standardised management documents assisting paediatricians. In the era of sub-specialisation, an electronic educational resource developed by specialists in epilepsy and paediatrics enhances the interface between tertiary and secondary/primary care. We aimed to create a website (www.pennsw.com.au) designed to optimise the care of all children and adolescents living with epilepsy and to assess its clinical usefulness. The site provides clinicians and families an aligned resource, including key information on epilepsy syndromes, medication usage and adverse effects, safety (sleep deprivation, water sports), driving, pregnancy, psychosocial impact of epilepsy and coping skills. General paediatricians and carers completed a questionnaire, utilising rating scales and open ended questions, to evaluate design, content and clinical usefulness. Forty-nine general paediatricians with a median 12years of paediatric practice participated. Thirty-two carers participated. Epilepsy syndrome was focal in 59% of the children and generalised in 41%. The majority of participants (paediatricians: 84–100%, families: 69–100%) rated the website as well designed, practical, informative and clinically useful. General paediatricians considered the “Medication” pages and “Epilepsy Management Documents” as practically useful. Carers recorded the “Family Resources”, seizure recording documents, the support information on mental health, and the “Coping with Epilepsy” segment as most informative. General paediatricians and carers highly valued the website, reflected by 120,000 page views in 12months since its launch.

Psychosocial aspects of epilepsy in Nigeria: a review

Epilepsy is a chronic disorder marked by intermittent, often unpredictable seizures which may be embarrassing and disruptive to the normal activity of daily living. This review was undertaken to provide information / data on the prevalence, seizure types, treatment issues and psychosocial impact of epilepsy in Nigeria. We searched the PUBMED database with emphasis on studies conducted in Nigeria using a combination of the following words: epilepsy, seizure, convulsion, prevalence, epidemiology, psychiatric morbidity, social issues, quality of life, cognition, school performance, treatment issues and Nigeria. 48 relevant studies that met the criteria were reviewed. The point prevalence of epilepsy varies from 5.3 to 37 per 1000 in Nigeria. Most studies showed a predominance of generalized tonic-clonic seizures. Nigerian patients with epilepsy suffer social deprivation and discrimination in education, employment, housing, marital life as well as associated psychiatric morbidity. Epilepsy, a stigmatizing disorder in Nigeria, has a significant impact on the day to day functioning of those with the condition.

The psychosocial impact of epilepsy in childhood

In addition to its medical impact with respect to loss of control, drug effects, and comorbidity, epilepsy has a marked impact on a child’s life. Population-based studies show that 70–76% of children with epilepsy have some type of disability or handicap affecting their daily life and choices for the future. Comorbidity and, specifically, learning disability (sometimes referred to as mental retardation) modify the life of a child and the family. To improve these children’s position in society, they should have the same opportunities and be allowed to make choices on the basis of their abilities, not their diagnosis of epilepsy. Supporting the development of acceptance, self-reliance, self-respect, and self-empowerment of children with epilepsy is crucial to their achieving a place in the community equal to their abilities. This is a challenging task for their families, relatives, schoolteachers, employers, and legislators.

The psychosocial impact of epilepsy in adults with an intellectual disability

Epilepsy has a pervasive impact on the quality of life, and thus the psychosocial well-being, of adults with an intellectual disability. Social and economical well-being appears to be affected by an increase in restrictions on activities and thus social contact. The population has very high rates of challenging behaviors and of mental illness. It is likely that these have a significant impact on epilepsy management. When populations with and without epilepsy are controlled for level of ability, no difference in prevalence of behavior or mental illness is seen between the populations. Current knowledge is limited on crucial issues such as the long-term effect of seizure disorder on mental health, quality of life, and cognition.

The psychosocial impact of epilepsy in adults

Although defined by the presence of recurrent seizures, epilepsy can be so much more and can include a very wide range of difficulties in cognition, psychiatric status, and social adaptive functioning. These psychosocial complications of epilepsy have a long history, generating calls for action by national commissions, public health agencies, and special action groups which are briefly summarized here. Next, a brief overview of the prevalence of psychosocial complications of epilepsy in population-based and other representative is presented. Finally, with a focus on the onset and development of psychosocial difficulties, the following points are stressed: (1) neurobiological factors likely contribute to psychosocial problems in a major way, but currently this contribution is poorly understood, and (2) although neurobiological factors may prove important, they operate in a social setting, and therefore, a full accounting of the etiology, treatment, and prevention of psychosocial problems in epilepsy will require an integrated biopsychosocial model and life span perspective.

The psychosocial impact of epilepsy in older people

Given a prevalence of 0.5–1%, the epilepsies belong to the most common of neuropsychiatric diseases. Many clinicians think of the epilepsies as an entity beginning in early in life. However, the peak incidence of epilepsy in the developed world is now in the age group beyond 60 years. This population has thus an increasing importance; and in this paper we review and summarize the specific aspects of the clinical presentation, etiology, diagnosis, and treatment of older-age patients with epilepsy. In particular, we focus on the specific psychosocial impact that epilepsy has on the life of older people and their carers.

Psychological impact of illness intrusiveness in epilepsy—Comparison of treatments

Chronic illnesses are associated with multiple stressors that compromise quality of life (QOL). Implicit in many of these is the concept of illness intrusiveness, the disruption of lifestyles and activities attributable to constraints imposed by chronic disease and its treatment. This study tested the illness intrusiveness theoretical framework in epilepsy and compared the impact of pharmacological and surgical treatments on illness intrusiveness and QOL. Cross-sectional data compared three epilepsy groups (N = 145): (a) 40 patients admitted for presurgical evaluation to an Epilepsy Monitoring Unit; (b) 52 patients treated pharmacologically; and (c) 53 post-surgical patients. Illness intrusiveness differed significantly across epilepsy patients with the differences primarily related to seizure control. Illness intrusiveness varied inversely with seizure control (p < .05). Seizure freedom, whether achieved by surgical or pharmacological treatments, was associated with maximal reduction of illness intrusiveness. Increased illness intrusiveness correlated significantly with decreased QOL and increased depressive symptoms. Perceived control over diverse life domains correlated positively with QOL and psychosocial outcomes. Path analysis supported the validity of the illness intrusiveness theoretical framework in epilepsy. Illness intrusiveness is an important determinant of the psychosocial impact of epilepsy and its treatment. Effective pharmacological or surgical treatment may reduce illness intrusiveness in epilepsy. Findings also offer encouragement that QOL in epilepsy, as in other chronic conditions, may be enhanced by multidisciplinary bio-psychosocial efforts. Health care providers should consider multifaceted interventions to reduce illness intrusiveness and, thereby, improve QOL.

The psychosocial impact of epilepsy in Czech children: what are causative factors of differences during ten years interval?

Epilepsy is the most common chronic neurological condition in childhood. In this paper we present results of analysis of a comparative survey, using data derived from 34-item questionnaire completed by 2 groups of children with epilepsy from the whole Czech Republic. The first group (1,217 children) was invited to complete the questionnaire in 1995, the second group (612 children) in 2004. The greatest attention is usually paid to the "biological" characteristics of epilepsy like control of seizures or adverse effects of medication. However, children's perception or feelings about epilepsy and interferences with their everyday life (school, socializing, holidays, leisure time...) seem's to be at least of the same importance. That's why our main objective was to examine exactly such psychosocial aspects of quality of life (QOL) and we targeted to identify any potential shift of children's perception over the last 10 years. Three principal informations arised out of this analysis: during the 10 years period adverse effects of antiepileptic drugs (AEDs) became less frequent, probably in accordance with the shift towards the use of new AEDs. The second group in feels to be less restricted in personal, social and sporting activities - most probably because they have generally achieved better control of seizures. The children admitted better awareness about epilepsy among teachers and friends over 10 years. The study has provided important information about the level of psychosocial QOL of children with epilepsy in the Czech Republic and showed a slight shift towards optimism in thinking and feeling of children with epilepsy during the 10-years period.

Psicose e depressão na epilepsia do lobo temporal

INTRODUÇÃO: A epilepsia traz consigo um risco aumentado de desenvolvimento de distúrbios psiquiátricos. Pacientes com epilepsia parcial têm um risco maior do que aqueles com epilepsia generalizada idiopática. Além disso, a condição crônica das crises parece ser um fator importante no risco aumentado. Os sintomas resultam de mecanismos psicopatológicos muito diversos entre os pacientes. As classificações são baseadas na sintomatologia psiquiátrica, na presença ou ausência de distúrbios da consciência, em anormalidades do EEG e na relação temporal entre os sintomas e as crises. RESULTADOS: Comorbidades psiquiátricas em epilepsia são muito freqüentes, especialmente aquelas que têm o lobo temporal como área epileptogênica principal. As desordens com maior prevalência são os distúrbios de humor como depressão maior, ansiedade e psicose. CONCLUSÃO: A epilepsia do lobo temporal per se, não pode ser considerada um fator de risco para o desenvolvimento de sintomas psiquiátricos, ou mais severos, dentre os pacientes com epilepsia parcial. Fatores concomitantes como duração da epilepsia e freqüência de crises podem ter um papel adicional importante. O reconhecimento mais acurado das comorbidades psiquiátricas poderá ajudar no desenvolvimento e implementação de programas apropriados de diagnóstico e tratamento, assim como melhorar o devir e a qualidade de vida dos pacientes com epilepsia.

The neuropsychological and emotional consequences of living with intractable temporal lobe epilepsy: implications for clinical management

Purpose: To investigate and document the neuropsychological and emotional effects of epilepsy in people with intractable temporal lobe epilepsy (TLE).Methods: 273 patients with a diagnosis of TLE underwent a complete neuropsychological and psychological examination as a routine part of their investigation for epilepsy surgery. Neuropsychological assessment included measures of intellect, memory, language functioning, higher executive functioning, emotional well-being and the psychosocial impact of epilepsy and its treatment.Results: The sample comprised 135 females and 138 males with a clearly lateralised epileptogenic focus. Patients were mildly anxious but not depressed, although many reported that epilepsy and its treatment had a marked effect on their daily lives. Current reading ability was in the average range; the mean obtained full scale IQ was 88 (low average range). Verbal memory functioning was within the borderline impaired range with visual memory functioning within the average range. Mean language performance was between the 5–10th percentile. Higher executive functioning results were in the normal range.Multiple univariate analyses were performed according to onset laterality. There were no significant differences between the groups on measures of psychological or emotional functioning. Participants with left TLE scored significantly lower than those in the right temporal group on measures of verbal intelligence, general intelligence, attention span and expressive language functioning.Conclusions: Patients with intractable epilepsy suffer significant neuropsychological difficulties in terms of their intellect, memory and language. Higher executive functioning appears unaffected. In addition, there is also evidence of emotional distress. These all impact upon their day-to-day functioning, which can be improved by the application of various psychological therapies and interventions.

Quality of life research in adults with epilepsy in Japan

Quality of life (QOL) research in epilepsy is a relatively recent development, but the field has expanded rapidly over the past 10 to 15 years. This expansion has seen the development of many tools with which to measure QOL in specific psychosocial domains and treatment settings. However, to date the initial development of these tools has been in English. Tools are also necessary to assess the QOL of people with epilepsy in non—English-speaking countries. These tools can be produced in two ways: by developing original tools in the language spoken in the country of use, or by translating and validating tools originally published in English. The latter approach has the advantages of being more rapid and allowing cross-cultural comparisons. We have completed or are in the process of translating into Japanese and validating three QOL assessment tools: the Washington Psychosocial Seizure Inventory, the Side Effects and Life Satisfaction inventory, and the Quality of Life in Epilepsy questionnaire. In this article, the results of this process are reported and cross-cultural comparisons using some of these tools are made. In this way, some of the problems associated with translating and validating QOL assessment tools are illustrated, and differences and similarities in the psychosocial impact of epilepsy in different countries are highlighted.

The Psychosocial Impact of Epilepsy in Childhood

Epilepsy is a chronic medical condition that affects many children The impact of epilepsy on children's psychosocial life and development are surveyed, and some of the problems faced by children and adolescents with epilepsy are identified The importance of experiencing success, developing self-respect, and learning to be independent are stressed, since these issues are important for adult success and happiness Health care workers need to know about the totality of health care needs of children with epilepsy, including medical and psychosocial factors, so they can act as advocates to help remove the barriers these children face.