Orientador: Edmea Rita Temporini Nastari / Tese (doutorado) - Universidade Estadual de Campinas, Faculdade de Ciencias Medicas / Made available in DSpace on 2018-08-10T00:20:43Z (GMT). No. of bitstreams: 1 Mazzaro_JoseLuiz_D.pdf: 2658396 bytes, checksum: 487f4424a3fd3a436ffbd688bcdf7721 (MD5) Previous issue date: 2007 / Resumo: Realizou-se um "survey" transversal, descritivo e analítico, com o objetivo de identificar conhecimentos e opiniões de professores e pais de alunos com baixa visão incluídos em escolas públicas da rede regular de ensino de Brasília (DF), em relação ao problema visual, equipamentos, sistemas, técnicas e recursos relacionados à deficiência visual e ao processo educacional, visando subsidiar programas de ensino de baixa visão. A população foi de 174 professores e 86 pais, compondo amostra não probabilística. Foram elaborados dois questionários estruturados, um auto-aplicável, respondido pelos professores e outro aplicado por entrevista aos pais. Para garantir a confiabilidade e a validade dos dados, os questionários foram submetidos a testes prévios. Em relação aos professores da população do estudo, predominaram os do sexo feminino (74,1%) e razoável experiência profissional. A maior parte (62,1%) lecionava pela primeira vez para alunos com baixa visão. A maioria (89,7%) deClarou formação superior completa e quase a totalidade (97,1%) que não possuía formação na área da deficiência visual, a maioria (73,0) não tinha recebido treinamento ou orientação nos últimos três anos. A maioria (73,0%) se auto-avaliou sem preparo para: lecionar para alunos com baixa visão e quase a totalidade (96,6%), dependência do professor especializado. Em relação à população dos pais, evidenciou-se ligeira predominância do sexo feminino (62,8%) e predomínio de baixa escolaridade. Pouco mais da metade (52,3%) não exerciam atividade remunerada e os que exe_ciam, eram atividades de baixa especialização. As causas da baixa visão mais apontadas pelos pais foram a toxoplasmose, a catarata e o glaucoma congênitos. Os familiares (53,%) foram os primeiros a suspeitarem de problema visual do filho, tendo ocorrido nos seis primeiros meses de vida. A maioria acreditava que o problema de visão dos filhos, atrapalhava para enxergar no quadro-negro, no caderno, na escrita e na leitura de livro. A maioria dos pais (73,1%), atribuíram a repetência escolar a outras dificuldades, tendo manifestado satisfação, com o atendimento da escola. Auto-avaliaram-se preparados para prestarem informações sobre a deficiência visual do filho. Os pais manifestaram conhecimento insuficiente sobre as limitações causadas pela deficiência visual e sobre as necessidades dos filhos, em relação a equipamentos, recursos e sistemas capazes de potencializar o uso da visão residual. Evidenciou-se que os professores manifestaram não apresentar conhecimentos suficientes para o desenvolvimento de trabalho pedagógico de qualidade com alunos que apresentavam baixa visão / Abstract: A descriptive and analytical cross-sectional survey was conducted, with the objective of identifying the knowledge and the opinions of teachers and parents of students with low vision in public schools of regular system of education in Brasília (DF), regarding the visual problem, equipment, systems, techniques and resources related to the visual deficiency and the educational process, aiming to subsidize programs of education in low vision. The population was of 174 teachers and 86 parents, consisting on a non-probabilistic sample. Two structuralized questionnaires had been elaborated: one auto-applicable, answered by the teachers, and another applied by interview with parents. To guarantee the trustworthiness and the validity of the data, the questionnaires had been submitted to previous tests. Concerning the teachers of the population of the study, the female sex predominated (74,1%) and also the ones with reasonable professional experience. The biggest part of them (62,1 %) taught students with low vision for the first time. The majority (89,7%) declared higher education and almost the totality (97,1%) didn't have vocational training in visual deficiency. The majority (73%) have not received . training or orientation in the last three years. Most of them had self-evaluated themselves without preparation to teach students with low vision and almost the totality (96,6%) of them depends on the support ofthe specialized teacher. Regarding the parents population, it was predominant the female sex (62,8%) with low leveI of education. A few more than a half(52,3%) didn't have income and the parents that did have ajob, had low specialization. Some examples of pointed causes for low vision by the parents were toxoplasmosis, cataract and the glaucoma congenital. The family members (53%) had been the ftrst ones to suspect of the visual problem of the child, occurring in the first six months of life. Most of them believed that the visual problem confused the child in seeing the blackboard, the notebook, in writing and in reading books. The majority of the parents (73,1%), had attributed failing at school to other difficulties, showing satisfaction with the attendance of school. Many parents had self-evaluated themselves prepared to give information of the visual deftciency of the sono The parents had revealed insufficient knowledge on the limitations caused by the visual deficiency and on the necessities of the children, regarding equipment, resources and systems capable of potentizing the use of the residual vision. lt was concluded that the teachers revealed insufficient knowledge for the development of a quality pedagogical work with low vision students / Doutorado / Ciencias Biomedicas / Doutor em Ciências Médicas

Urbach-Wiethe Sindroom (beter bekend as lipo"ied prote"inose of hyalinosis cutis et mucosae) is 'n seldsame, outosomaal-oorerflike siekte. Die kenmerkendste simptome van die siekte is vel- en slymvliesveranderinge wat deur 'n neerslag van ekstrasellulere hialienagtige materiaal van onbekende oorsprong veroorsaak word. Die vel word maklik beseer, genees stadig en lelike, pokagtige letsels ontstaan. 'n Fyn, korrelagtige neerslag op die ooglede, die sogenaamde "kralestringvoorkoms" kenmerk die siekte, sowel as heesheid, die prominentste en lastigste simptoom, wat sedert geboorte teenwoordig kan wees. Radiografie en tomografie toon bilaterale,boontjievormige verkalking op die temporale lobbe van die brein, wat tot epileptiese aanvalle en ander neuropsigiese simptome soos geremde geheue en aggressie lei. Heesheid veroorsaak kommunikatiewe beperkinge vir die lyer,terwyldie opsigtelike velletsels aversiewe- en die verkalkings onsigbare beperkinge meebring. Die lyer aan Urbach-Wiethe Sindroom kan volgens die beginsels en kriteria van die medies-kliniese, die persoonsgeorienteerde en die sosio-omgewingsperspektiewe gestremdheid ondervind. Teoreties kan die lyer se belewinge van sy andersheid en die nie-aanvaardingdeurdie gemeenskap, soos by gestremdes,die handhawing van sy selfagting rem, sodat 'n negatiewe selfkonsep tot skuldgevoelens, angsbelewinge en depressie kan lei. 'n Betekenisvolle verband is in die empiriese ondersoek tussen die graad van aantasting en wanaanpassing in die lyer se leefwereld gevind. Die lyers wat ernstig aangetas is, identifiseer moeilik met hulle fisieke voorkoms. ldentiteitsvorming word gerem en die selfagting is negatief. Hulle openbaar 'n negatiewe selfkonsep en depressiewe gevoelens met selfmoordgedagtes. Hulle relasies en sosialisering is problematies en hulle voel hulle word nie deur die gemeenskap aanvaar nie. Die lyers ondervind 'n algemene wanaanpassing in hulle leefwereld. 'n Geval van paranoia is ook gevind. Alhoewel die ouers vrae oor die toestand het en sekere emosies beleef, kan die meeste van hulle die situasie hanteer. Riglyne vir 'n terapeutiese begeleidingsprogram vir lyers aan Urbach-Wiethe Sindroom, wat op die verbetering van die selfkonsep; die hantering van depressie, aggressie en woedebuie, asook die verbetering van relasies en sosialisering gerig is, is saamgestel. 'n Ondersteuningsgroep waarby lyers en hulle ouers kan inskakel, is gestig. / Urbach-Wiethe Syndrome, also known as lipoid proteinosis or hyalinosis cutis et mucosae, is a rare, recessively inherited, autosomal disorder characterized by lesions of the skin and mucosae, caused by widespread deposition of hyaline material of unknown etiology. The skin injures easily and heals slowly with "pock­ like" lesions. Bead-like deposits on the eyelids, called "string of pearls",are often found. Present since early infancy, hoarseness is the first, and most striking, irritating symptom. Bean-shaped intracranial calcification within the temporallobes of the brain in the area of the hippocampus, shown up by radiography and tomography, may cause epileptic seizures and other neuropsychological complications like impaired memory and aggression. The sufferer experiences communicative impairment through hoarseness, aversive impairment because of the conspicuous lesions, and concealed impairment as a result of the calcifications. According to the medical-clinical,person-orientated and socio-environmental perspectives on disability, a sufferer of Urbach-Wiethe Syndrome may experience disability. Like disabled persons, the sufferer finds it difficult to identify with his physical appearance. Impaired identity formation and low self-esteem cause a negative self­ concept. Feelings of guilt,anxiety and depression result from perceived dissimilarity, social rejection and low self-esteem. Socialising is adversely affected. A significant relationship was found in the empirical study between the extent to which the sufferer is affected and the degree of maladjustment in his life-world. Seriously affected sufferers display a negative self-concept and feelings of depression with suicidal thoughts. Socialisation and relationships are problematic and sufferers feel unaccepted by the community. General maladjustment in the life-world is experienced. A case of paranoia was reported. Except for some questions and unresolved feelings about the disease,most parents are able to cope with the situation. Guidelines have been set for a therapeutic programme for sufferers from Urbach­ Wiethe Syndrome aimed at enhancing self-concept, coping with depression and aggression, and improving relationships and socialising. A support group has been ounded for sufferers and their parents. / Psychology of Education / D. Ed. (Sielkundige Opvoedkunde)

Urbach-Wiethe Sindroom (beter bekend as lipo"ied prote"inose of hyalinosis cutis et mucosae) is 'n seldsame, outosomaal-oorerflike siekte. Die kenmerkendste simptome van die siekte is vel- en slymvliesveranderinge wat deur 'n neerslag van ekstrasellulere hialienagtige materiaal van onbekende oorsprong veroorsaak word. Die vel word maklik beseer, genees stadig en lelike, pokagtige letsels ontstaan. 'n Fyn, korrelagtige neerslag op die ooglede, die sogenaamde "kralestringvoorkoms" kenmerk die siekte, sowel as heesheid, die prominentste en lastigste simptoom, wat sedert geboorte teenwoordig kan wees. Radiografie en tomografie toon bilaterale,boontjievormige verkalking op die temporale lobbe van die brein, wat tot epileptiese aanvalle en ander neuropsigiese simptome soos geremde geheue en aggressie lei. Heesheid veroorsaak kommunikatiewe beperkinge vir die lyer,terwyldie opsigtelike velletsels aversiewe- en die verkalkings onsigbare beperkinge meebring. Die lyer aan Urbach-Wiethe Sindroom kan volgens die beginsels en kriteria van die medies-kliniese, die persoonsgeorienteerde en die sosio-omgewingsperspektiewe gestremdheid ondervind. Teoreties kan die lyer se belewinge van sy andersheid en die nie-aanvaardingdeurdie gemeenskap, soos by gestremdes,die handhawing van sy selfagting rem, sodat 'n negatiewe selfkonsep tot skuldgevoelens, angsbelewinge en depressie kan lei. 'n Betekenisvolle verband is in die empiriese ondersoek tussen die graad van aantasting en wanaanpassing in die lyer se leefwereld gevind. Die lyers wat ernstig aangetas is, identifiseer moeilik met hulle fisieke voorkoms. ldentiteitsvorming word gerem en die selfagting is negatief. Hulle openbaar 'n negatiewe selfkonsep en depressiewe gevoelens met selfmoordgedagtes. Hulle relasies en sosialisering is problematies en hulle voel hulle word nie deur die gemeenskap aanvaar nie. Die lyers ondervind 'n algemene wanaanpassing in hulle leefwereld. 'n Geval van paranoia is ook gevind. Alhoewel die ouers vrae oor die toestand het en sekere emosies beleef, kan die meeste van hulle die situasie hanteer. Riglyne vir 'n terapeutiese begeleidingsprogram vir lyers aan Urbach-Wiethe Sindroom, wat op die verbetering van die selfkonsep; die hantering van depressie, aggressie en woedebuie, asook die verbetering van relasies en sosialisering gerig is, is saamgestel. 'n Ondersteuningsgroep waarby lyers en hulle ouers kan inskakel, is gestig. / Urbach-Wiethe Syndrome, also known as lipoid proteinosis or hyalinosis cutis et mucosae, is a rare, recessively inherited, autosomal disorder characterized by lesions of the skin and mucosae, caused by widespread deposition of hyaline material of unknown etiology. The skin injures easily and heals slowly with "pock­ like" lesions. Bead-like deposits on the eyelids, called "string of pearls",are often found. Present since early infancy, hoarseness is the first, and most striking, irritating symptom. Bean-shaped intracranial calcification within the temporallobes of the brain in the area of the hippocampus, shown up by radiography and tomography, may cause epileptic seizures and other neuropsychological complications like impaired memory and aggression. The sufferer experiences communicative impairment through hoarseness, aversive impairment because of the conspicuous lesions, and concealed impairment as a result of the calcifications. According to the medical-clinical,person-orientated and socio-environmental perspectives on disability, a sufferer of Urbach-Wiethe Syndrome may experience disability. Like disabled persons, the sufferer finds it difficult to identify with his physical appearance. Impaired identity formation and low self-esteem cause a negative self­ concept. Feelings of guilt,anxiety and depression result from perceived dissimilarity, social rejection and low self-esteem. Socialising is adversely affected. A significant relationship was found in the empirical study between the extent to which the sufferer is affected and the degree of maladjustment in his life-world. Seriously affected sufferers display a negative self-concept and feelings of depression with suicidal thoughts. Socialisation and relationships are problematic and sufferers feel unaccepted by the community. General maladjustment in the life-world is experienced. A case of paranoia was reported. Except for some questions and unresolved feelings about the disease,most parents are able to cope with the situation. Guidelines have been set for a therapeutic programme for sufferers from Urbach­ Wiethe Syndrome aimed at enhancing self-concept, coping with depression and aggression, and improving relationships and socialising. A support group has been ounded for sufferers and their parents. / Psychology of Education / D. Ed. (Sielkundige Opvoedkunde)