Thesis (Ph.D.)--Indiana University, 2009. / Title from screen (viewed on November 4, 2009). School of Nursing, Indiana University-Purdue University Indianapolis (IUPUI). Advisor(s): Sharon Sims, Carrie Foote, Joan Austin, Melinda Swenson. Includes vita. Includes bibliographical references (leaves 104-110).

The aim of the study was to investigate the neurobiological and psychosocial factors that influence neuropsychological test performance in children with epilepsy from a non-Western rural background. The sample comprised 100 children with tonic-clonic seizures and 100 children with simple partial seizures between the ages of eight to twelve years. A third group of 100 children with chronic renal problems was used as a comparison to control for the effects of having a chronic illness. The findings of the present study indicate that in the epilepsy groups, seizure variables such as the age of onset, frequency of seizures and duration of seizures have an impact on self-esteem, adjustment and NEPSY scores. However, psychosocial and emotional factors appear to have a greater impact than neurobiological variables on the measured neuropsychological domains (attention/executive, language, sensorymotor and learning/memory functions). These findings are consistent with the theoretical perspectives used, combining the view of Piaget (1955) that cognitive development proceeds as a result of the child’s own activities, with Luria’s (1973) model of brain functioning and the stance of Vygotsky (1978) that development is a socially mediated process. The findings regarding the influence of neurobiological and psychosocial factors on neuropsychological test performance in children with epilepsy from non-Western backgrounds are similar to those of Western studies. Epilepsy presents with unique problems relative to other chronic illnesses. The three groups are separated according to differences in psychosocial (maternal attitudes), emotional (adjustment and self-esteem) as well as neuropsychological functioning (attention/executive, language and visual-spatial skills). The renal group is characterised by the highest levels of psychosocial, emotional and neuropsychological functioning, while the simple partial seizure group have lower levels of psychosocial and emotional functioning, and the tonic-clonic seizure group have the lowest levels of neuropsychological functioning and adjustment. / Psychology / D.Litt et Phil. (Psychology)

The aim of the study was to investigate the neurobiological and psychosocial factors that influence neuropsychological test performance in children with epilepsy from a non-Western rural background. The sample comprised 100 children with tonic-clonic seizures and 100 children with simple partial seizures between the ages of eight to twelve years. A third group of 100 children with chronic renal problems was used as a comparison to control for the effects of having a chronic illness. The findings of the present study indicate that in the epilepsy groups, seizure variables such as the age of onset, frequency of seizures and duration of seizures have an impact on self-esteem, adjustment and NEPSY scores. However, psychosocial and emotional factors appear to have a greater impact than neurobiological variables on the measured neuropsychological domains (attention/executive, language, sensorymotor and learning/memory functions). These findings are consistent with the theoretical perspectives used, combining the view of Piaget (1955) that cognitive development proceeds as a result of the child’s own activities, with Luria’s (1973) model of brain functioning and the stance of Vygotsky (1978) that development is a socially mediated process. The findings regarding the influence of neurobiological and psychosocial factors on neuropsychological test performance in children with epilepsy from non-Western backgrounds are similar to those of Western studies. Epilepsy presents with unique problems relative to other chronic illnesses. The three groups are separated according to differences in psychosocial (maternal attitudes), emotional (adjustment and self-esteem) as well as neuropsychological functioning (attention/executive, language and visual-spatial skills). The renal group is characterised by the highest levels of psychosocial, emotional and neuropsychological functioning, while the simple partial seizure group have lower levels of psychosocial and emotional functioning, and the tonic-clonic seizure group have the lowest levels of neuropsychological functioning and adjustment. / Psychology / D.Litt et Phil. (Psychology)

Orientadores: Elisabete Abib Pedroso de Souza, Marilisa Mantovani Guerreiro / Dissertação (mestrado) - Universidade Estadual de Campinas. Faculdade de Ciências Médicas / Made available in DSpace on 2018-08-16T10:22:04Z (GMT). No. of bitstreams: 1 Siqueira_NathaliaFerreira_M.pdf: 904151 bytes, checksum: a644f5027fbb63d5569dbe3f69cbf6a8 (MD5) Previous issue date: 2010 / Resumo: A epilepsia passa a significar perdas em diferentes áreas: física, saúde, emprego, relações sociais e familiares. Autoestima e autoconfiança também são afetadas. O presente trabalho teve como principal objetivo avaliar e comparar a autoestima dos adolescentes com epilepsia e sem epilepsia. Também objetivou-se avaliar e relacionar a qualidade de vida com a autoestima no adolescente com epilepsia. Variáveis clinicas e demográficas e aspectos relacionados a representação da doença foram considerados. Esse estudo avaliou 67 adolescentes, de ambos os sexos, na faixa etária de 11 a 18 anos, 37 pacientes assistidos no ambulatório de Neurologia/ HC da Unicamp com diagnostico de epilepsia e 30 adolescentes sem este diagnostico que frequentavam escolas publicas na região de Campinas-SP. O critério de inclusão do estudo foi: ter diagnostico de epilepsia há mais de dois anos para o grupo com epilepsia e não ter epilepsia para o grupo sem epilepsia e habilidade para responder questões por eles mesmos. O critério de exclusão para os dois grupos foi: não ser portador de outras doenças neurológicas progressivas ou doenças psiquiátricas evidentes, não terem se submetido a cirurgia no cérebro, não fazerem uso de medicações que pudessem afetar o sistema nervoso central, exceto drogas antiepilepticas. Foram aplicados a Escala de Autoestima (EMAE) padronizada e validada para a população brasileira, o Inventario de Qualidade de Vida para adolescentes com epilepsia - versão brasileira (QOLIE-AD-48) e um questionário aberto para avaliar as representações da doença. Esse estudo mostra que o grupo de adolescentes com epilepsia obteve uma media de pontuação de autoestima acima do esperado com maiores escores nas dimensões autoestima família e autoestima escola comparado com o grupo sem epilepsia. O grupo com epilepsia também apresentou uma avaliação da qualidade de vida acima do esperado. Inicio das crises, idade e escolaridade obtiveram relações significativas com autoestima. Com relação aos aspectos subjetivos, os adolescentes sabem e entendem a doença, conversam com familiares e amigos, relatam mais sentimentos positivos e tendem a lidar com a doença de maneira mais adaptada, apesar das restrições de lazer. Foi importante o reconhecimento da presença de suporte social como estratégia de adaptação positiva e da importância da percepção do controle de crises como facilitador de contatos sociais e uma convivência normal / Abstract: Epilepsy is a disease that is associated with losses in different areas: health, employment, social and family relationships. Self esteem and self confidence are also affected. The study present primarily the evaluate and compare the self esteem of adolescents with epilepsy with adolescents without epilepsy. Aimed also evaluate and associate the quality of life with the self esteem of adolescents with epilepsy. Clinical and demographics variables and aspects related to disease representation were considered. This study evaluated 67 adolescents, both male and female, aged from 11 to 18 years, 37 were patients with epilepsy attending the Neurology Ambulatory and 30 adolescents who didn't have epilepsy were attending public schools in Campinas-SP. The inclusion criteria were: a diagnosis of epilepsy for more than 2 years for the group with epilepsy and no diagnosis of epilepsy for the group without epilepsy, ability to answer the questions by himself/herself. The exclusion criteria were: had another progressive neurological or psychiatric illness, if they had had brain surgery, used a concomitant medication with central nervous system effects, except antiepileptic drugs. Were applied the a scale for self esteem (EMAE), standardized and validated for the brazilian population, Inventory of quality of life for adolescents with epilepsy - Brazilian version (QOLIE-AD-48) and a opened questionnaire for evaluate the disease representation. This study showed that the group of adolescents with epilepsy got a mean score of self esteem above the expectations with higher scores in the dimensions family self esteem and school self esteem. The group with epilepsy also presented a evaluation of quality of life above the expectations. Onset seizure, age and schooling got significant relations with self esteem. With respect to subjective aspects, the adolescents known and understanding the illness, talking with family and friends, report more positive feelings and tend to deal with the disease in a manner best suited, despite of leisure restriction. It was important to recognize the presence of social support as positive adaptation strategy and the importance of the perception of seizure control as a facilitator of social contacts and living a normal / Mestrado / Ciencias Biomedicas / Mestre em Ciências Médicas

Indiana University-Purdue University Indianapolis (IUPUI) / This study is a qualitative description of the everyday lives of adolescent girls with epilepsy. The primary purpose of the research was to determine whether or not elements of stigma were present in narratives about participants’ day-to-day living. The researcher used open-ended and semi-structured interview techniques in a series of interviews with four adolescent girls with epilepsy. Elements of stigma were present in some of the constructed themes; however, the researcher also uncovered other unexpected themes. Themes constructed by the researcher included: 1) I Am Like Everyone Else (Except for my Seizures); 2) There are Worse Things than Epilepsy; 3) My Parents Trust Me; 4) Am I Having a Seizure?; 5) Bullying Because of Seizures; 6) Bullying Because of Something other than Seizures; 7) Coping with Bullying; 8) Academic Difficulties;9) Disclosure Management; 10) Seizures are Scary to Have and to See; and 11)If I have a Seizure, Don’t Attract Attention to Me! The researcher considers topics thought to be important to adolescents with epilepsy about which the participants kept silent. The researcher makes suggestions about how the research can be used to improve health care practice and guide educational policies for adolescent students with epilepsy. Based on the findings, the researcher suggests areas for future research in nursing and educational policy.

After the dispensation of the White Paper 6 in schools, there were no detailed guidelines to accommodate the learners with invisible impairments like absence epilepsy, especially those who live in underprivileged communities. Affected learners are still struggling and not receiving proper instruction in ordinary schools because of the nature of absence epilepsy. It seems like it is unknown that they are suffering, because the symptoms are absent. These learners are performing poorly; they are having learning and behavioural problems. At home parents are ignorant of their plight, teachers are oblivious of their problems and at schools they are being discriminated against by other children. As a result, they repeat grades and some end up leaving school to join the unemployed. They have a low self-esteem and remain unsociable. This is because they suffer from absence epilepsy which is a medical problem. Absence epilepsy is unknown to both parents and teachers in these communities. Cultural beliefs and ignorance prevent parents from taking these children to clinics for identification, which results in them not being supported in schools. / Inclusive Education / M. Ed. (Inclusive Education)