[pt] A confirmação do diagnóstico de surdez do filho pode provocar conflitos internos nos pais ouvintes, dificultando o investimento emocional e afetivo no filho surdo. Diante da importância da família para a promoção do desenvolvimento da criança, esta pesquisa teve como objetivo investigar como pais e mães ouvintes vivenciam a parentalidade com um filho surdo. Para tal, consideramos importante abordar a definição de surdez e as possíveis causas, tipos, graus e tratamento da perda auditiva, as concepções socioculturais da surdez e a cultura surda. Para uma melhor compreensão do impacto do diagnóstico no exercício da parentalidade, abordamos algumas questões referentes ao nascimento de uma criança muito diferente da esperada pelos pais, a adaptação/aproximação com a criança surda – que exige um processo de luto – e as particularidades da interação entre os pais ouvintes e o filho surdo. Realizamos um estudo qualitativo. Foram entrevistados oito sujeitos independentes, pais e mães ouvintes (quatro homens e quatro mulheres). A partir da análise do material discursivo das entrevistas dos participantes, emergiram seis categorias: 1) Descoberta da surdez: da suspeita à confirmação do diagnóstico; 2) Confirmação do diagnóstico: luto na parentalidade com um filho surdo; 3) O ideal do filho falante; 4) (Des)conhecimento da surdez e sua influência nos cuidados parentais; 5) Rede de apoio na surdez; 6) Tornando-se pais resilientes. Constatamos que a confirmação do diagnóstico de surdez do filho é uma situação complexa para os pais ouvintes. A diferença significativa entre a criança idealizada e a real, que não nasceu normal e saudável, é um desafio a ser enfrentado pelos pais, que apresentaram muitas dificuldades em aceitar o diagnóstico. Somado a isso, a compreensão da surdez como patologia e, diante disso, a busca do implante coclear como meio de viabilizar a cura do filho, atuam também como dificultadores do processo de aceitação e enfrentamento. A vivência do luto pelo filho idealizado, das emoções e dos sentimentos decorrentes deste processo, assim como o suporte da rede de apoio e o conhecimento acerca da surdez e das potencialidades da pessoa surda são elementos essenciais que possibilitaram aos pais ressignificar o diagnóstico e se relacionar com o filho surdo. Isto repercutiu no processo de resiliência frente à surdez do filho e na promoção de saúde de todos os membros da família. Os resultados desse estudo apontam, ainda, a necessidade de apoio e orientação para os pais ouvintes, que muitas vezes ficam mobilizados e desorientados frente à criação de um filho surdo. / [en] Confirmation of the diagnosis of deafness of one s child may provoke internal conflicts in the hearing parents, hindering the emotional and affective investment in the deaf child. Given the importance of the family for the promotion of child development, this research aimed to investigate how hearing mothers and fathers experience parenting with a deaf child. To that end, we consider it important to address the definition of deafness and its possible causes, types, degrees and treatment of hearing loss, sociocultural conceptions of deafness and deaf culture. For a better understanding of the impact of the diagnosis in the exercise of parenting, we address some questions regarding the birth of a child very different from that expected by the parents, the adaptation / approximation with the deaf child - which requires a grieving process - and the particularities of the interaction between the hearing parents and the deaf child. We performed a qualitative study. Eight independent subjects, hearing parents (four men and four women) were interviewed. From the analysis of the discursive material of the participants interviews, six categories emerged: 1) Discovery of deafness: from suspicion to confirmation of diagnosis; 2) Confirmation of the diagnosis: mourning in parenthood with a deaf child; 3) The ideal of the talking son; 4) (Un) knowledge of deafness and its influence on parental care; 5) Support network in deafness; 6) Becoming resilient parents. We found that confirming the deafness diagnosis of the child is a complex situation for the hearing parents. The significant difference between the idealized and the real child, who was not born normal and healthy, is a challenge to be faced by the parents, who presented many difficulties in accepting the diagnosis. In addition, the understanding of deafness as a pathology and, in the face of this, the search for cochlear implants as a means of enabling the child to heal also act as obstacles to the process of acceptance and coping. The experience of mourning for the idealized child, the emotions and feelings resulting from this process, as well as the support network and the knowledge about deafness and the potentialities of the deaf person are essential elements that enabled the parents to resignify the diagnosis and to relate with the deaf child. This had repercussions on the process of resilience to the deafness of the child and on the health promotion of all family members. The results of this study also point to the need for support and guidance for the hearing parents, who are often mobilized and disoriented in the face of the creation of a deaf child.

This study explored the sign language learning experiences and contexts of a hearing family who decided to learn and use American Sign Language (ASL) with their young deaf child. Multiple informants, including family members and professional participants, and multiple methods of data collection and analysis provided accounts of experiences that were examined within the frameworks of family ecology (Bronfenbrenner, 1986) and Vygotskian theory (Vygotsky; 1962, 1978) about language learning in the zone of proximal development. Previous research regarding sign language learning has looked at language learning within the deaf child, but has not investigated the language learning context of family members who are hearing. This study identified a densely connected network of formal and informal service providers that both facilitated and constrained the sign language learning of the child and her family. Even these motivated parents encountered a system of service delivery that essentially ignored the profoundly social process of language learning for both the deaf child who was learning a first language and the family members who were trying to learn a second one. Most of the child’s communication-related care in the first year was focused on her hearing loss. Despite the mobilization of effort in response to the child’s profound hearing loss, very little of the advice given by most professionals concerned the child’s language learning, and even less advice concerned how the family should and could learn sign language. The persons most influential in helping the family decide how to communicate with the child included the hearing daughter of deaf parents whom the family met through their church, a speech-language pathologist who provided early intervention services in the home, and a preschool teacher for hearing impaired children. While the child’s parents, an aunt, and her grandparents have taken a sign language class, other family members rely on the child’s mother to provide them with the language needed for communication with the child during their infrequent visits. Strategies for improving family sign language learning, including applications from second language learning research and immersion programs, are discussed. / Ph. D.

The purpose of this study was to compare and to describe deaf versus hearing readers' sensitivity to contextual build-up by examining each group's successive approximations of deleted noun meanings as constructed in cumulative cloze tasks. The methodology of this study, a 2 X 5 X 2 factorial design, focused on successive predictions of deleted noun meanings in five cumulative cloze tasks completed by five deaf and five hearing readers at fourth-, sixth-, eighth-, tenth-, and twelfth-grade levels. Both for deaf and hearing readers, sentences within the five individual cumulative cloze passages where the greatest gain in comprehension occurred (MG sentences) comprised an alternative cloze test for five other readers at all five grade levels. The results indicate that both deaf readers and hearing readers predict meaning more accurately given passage-level versus sentence-level contextual constraints. On this particular cumulative cloze task, deaf readers at grades eight, ten, and twelve performed similarly to hearing readers at grades eight, ten and twelve respectively. However, deaf readers in grades four and six performed significantly lower than their hearing counterparts. Hearing readers at all five grade levels and deaf readers at the eighth-, tenth-, and twelfth-grade levels increased in cumulative cloze accuracy as the number of exposure point in passage-level text increased. By the sixth, final exposure points in passage-level text, no significant differences were found in deaf versus hearing readers' predictions of target nouns at grade levels eight, ten, and twelve. Deaf readers tended to abandon correct choices after predicting target nouns more often than did hearing readers. Additionally, deaf readers returned to abandoned correct choices less often than did hearing readers. Both semantic and grammatical acceptability of cumulative cloze responses improved for deaf as well as for hearing readers as the amount of available contextual information increased in passage-level text. MG sentences, proved to be more semantically and grammatically acceptable under passage-level versus sentence-level contextual conditions. The results of this study indicate that given passage-level contextual constraints, deaf as well as hearing readers construct meaning similarly. / Ed. D.

Made available in DSpace on 2016-04-27T18:12:41Z (GMT). No. of bitstreams: 1 Rubem Cruz Swensson.pdf: 3036022 bytes, checksum: e643053bdc4197534a3068303708ff89 (MD5) Previous issue date: 2009-07-28 / Objective: Study the occurrence of infectious and contagious diseases in deafness children between 0 to 12 years old attended in a nongovernmental organization at Sorocaba city on the years 1995 and 2005. Method: This is a research based on retrospective study using database of an institution specialized on care of deafness people at Sorocaba city, São Paulo state. Were analyzed archives of children between zero to 12 years old on the years 1995 and 2005. Results: Of the 339 charts of patients between 0 and 15 years old attended the institution, were selected in 1995 and 2005, respectively, 70 and 155 children. In both years the cause of deafness was unknown in most children. Among the known causes, the most prevalent was the post-neonatal meningitis (24.0%) followed by congenital rubeola (11.1%). Although had not been statistically significant compared to the year 1995 and 2005, it was a decrease by 4.6% (from 14.3% to 9.7%) in prevalence of congenital rubeola. Was not observed any cases of neonatal herpes, HIV / AIDS or neonatal meningitis. Diseases such as congenital rubeola and meningitis decreased their prevalence rates in 2005 but toxoplasmosis and cytomegalovirus continued to occur. It´s possible observe a decrease of cases of children with late deafness (acquired) in 2005. This decrease may be due to vaccination campaigns against some etiologic agents especially the Haemophilus influenza type b, which became part of the portfolio of vaccine in 1999. Conclusions: Although the research conducted at the institution was not statistically significant, comparing the years 1995 and 2005, were find decreased by 4.6% (from 14.3% to 9.7%) in the prevalence of congenital rubeola, congenital syphilis, cytomegalovirus, and bacterial meningitis. The high number of unknown causes and late referrals emphasizes the need for adequate knowledge of the diagnosis and conduct in relation with hearing loss. Emphasize the professionals in the medical , fonoaudiologica and education fields, the importance of prevention and appropriate treatment of infectious and contagious diseases during pregnancy and postpartum. Disseminate the importance of vaccines, which play an important role to reduce or annul the hearing and neurological sequelae in relation to infectious and contagious disease. Warn the pregnant woman not to eat raw vegetables and raw or rare meat during the pregnancy to avoid toxoplasmosis. Be careful with sex partners due to syphilis and AIDS. Doing the appropriate medical or surgical treatment of diseases of the ear to prevent sequelae. Disclose to health professionals, educators, family, population, the referral to specialist services any suspected change in the hearing of the child especially in the first months of life / Objetivo: Estudar a ocorrência das doenças infectocontagiosas congênitas e adquiridas, em crianças deficientes auditivas, de zero a 12 anos de idade, atendidas em uma organização não governamental da cidade de Sorocaba nos anos de 1995 e 2005. Investigar se houve mudança na prevalência de perda auditiva por doença infectocontagiosa, em crianças deficientes auditivas, de zero a 12 anos de idade, atendidas em uma organização não governamental da cidade e Sorocaba nos anos de 1995 e 2005. Método: Trata-se de uma pesquisa baseada em estudo retrospectivo de banco de dados de uma instituição especializada no atendimento de deficientes auditivos da cidade de Sorocaba, SP. Foram analisados os prontuários de crianças de zero a 12 anos, nos anos de 1995 e 2005. Resultados: Dos 339 prontuários de pacientes, entre zero e 15 anos de idade, atendidos na instituição, foram selecionados nos anos de 1995 e 2005, respectivamente, 70 e 155 crianças. Em ambos os anos, a causa da surdez foi indeterminada na maioria das crianças. Dentre as causas conhecidas, a mais prevalente foi a meningite pós-neonatal (24,0%) seguida da rubéola congênita (11,1%). Embora não tenha sido estatisticamente significante, comparando-se os anos de 1995 e 2005, houve redução de 4,6% (de 14,3% para 9,7%) na prevalência de rubéola congênita. Não foi observado nenhum caso de Herpes neonatal, HIV/AIDS ou meningite neonatal. Doenças como a rubéola congênita e a meningite diminuíram seus índices de prevalência em 2005; porém, a toxoplasmose e citomegalovirose continuaram a ocorrer. É possível observar a diminuição de casos de crianças com surdez tardia (adquirida) em 2005. Essa diminuição pode ser devida às campanhas de vacinação contra alguns agentes etiológicos, especialmente o haemophilus influenza tipo b, que passou a fazer parte da carteira de vacina no ano de 1999. Conclusões: Embora no levantamento realizado na instituição não tenha sido estatisticamente significante, comparando-se os anos de 1995 e 2005, houve redução de 4,6 % (de 14,3 % para 9,7 %) na prevalência da Rubéola congênita., da Sífilis Congênita, Citomegalovírus Congênita, e Meningite bacteriana. O elevado número de causas desconhecidas e encaminhamentos tardios enfatizam a necessidade de conhecimento adequado do diagnóstico e a conduta em relação a perda auditiva da criança. Enfatizar aos profissionais nas áreas médica, fonoaudiológica e educacional, a importância da prevenção e tratamento adequado das moléstias infecto-contagiosas durante o período gestacional e pós-parto. Divulgar a importância das vacinas, que desempenham um papel importante para anular ou diminuir as seqüelas auditivas e neurológicas em relação a moléstia infecto-contagiosas. Alertar a gestante a não ingerir verduras cruas e carnes mal passadas ou cruas, durante o período de gravidez, a fim de evitar a toxoplasmose. Ter cuidado com os parceiros sexuais, devido a Sífilis e SIDA/AIDS. Realização do tratamento adequado clínico ou cirúrgico das patologias dos ouvidos, a fim de prevenir seqüelas. Divulgar aos profissionais de saúde, educadores, familiares, a população, o encaminhamento para serviços especializados, qualquer suspeita de alteração em relação à audição da criança, principalmente nos primeiros meses de vida

La seqüenciació del genoma humà ha marcat una fita important en la història de la biologia. Com a conseqüència, la genètica i la genòmica han experimentat un progrés enorme. Això ha permès un millor coneixement tant de les causes genètiques de malalties humanes, com del per què de les diferències comunes entre individus. Com a sistemes complexos que som tots els éssers vius, hem de considerar el paper que tenen les interaccions entre les diferents parts del genoma a l'hora d'especificar el resultat final, és a dir, el fenotip. Igualment, podem dir que el genoma conté un conjunt d'instruccions, però que la forma en què aquestes es porten a terme depèn, també de contingències ambientals i històriques. Per tant, la naturalesa de les instruccions genètiques no és completament determinista en tots els casos, si bé hi ha una sèrie de processos en què sí que es compleix aquesta perfecta relació entre herència i expressió final. Aquesta mateixa situació es presenta amb certes alteracions genètiques i amb el desenvolupament de patologies, la qual cosa facilita enormement el diagnòstic precoç i obre les possibilitats per a la teràpia genètica. Però la gran majoria de fenotips, incloent-hi moltes condicions d'interès per a la medicina, tenen una base complexa, és a dir, no existeix "el gen" que determina el caràcter de forma unívoca, sinó que aquest és el resultat de l'acció simultània de molts gens, no tots amb la mateixa participació, juntament amb l'efecte de l'ambient. Aquesta tesi doctoral va arrencar en aquest punt, tenint com a objectiu l'aprofundiment en les bases genètiques d'un tipus de sordesa lligada a mutacions al vi Preface DNA mitocondrial i de la qual se'n tenien evidències de la implicació tant de factors ambientals com diversos factors genètics. D'altra banda, els tests basats en l'ADN són un dels primers usos comercials i d'aplicació mèdica d'aquests nous descobriments de la genètica. Aquests tests poden ser utilitzats per al diagnòstic de malalties, confirmació diagnòstica, informació del pronòstic, així com del curs de la malaltia, confirmar la presència de malaltia en pacients assimptomàtics i amb diferents graus de certesa, predir el risc de futures malalties en persones sanes i en la seva descendència. Aquest és l'objectiu final, i sovint encara utòpic, de la recerca en biomedicina: una millor comprensió del procés biològic, que derivi en un millor tractament i prevenció de la malaltia. Aquesta tesi també ha volgut contribuir humilment en aquest aspecte. Durant aquests anys s'han recollit centenars de mostres de famílies sordes, amb la finalitat de donar un "diagnòstic" de la causa genètica. Poques vegades ho hem conseguit, però en qualsevol cas, si això alguna vegada ha ajudat a algú d'alguna manera, ja em dono per satisfeta.

The percentage of deaf and hard of hearing people who need mental health crisis services is similar to the percentage of the general population needing such services. Yet, coordinated mental services for deaf and hard of hearing individuals are virtually nonexistent. People who are deaf and hard of hearing, like everyone else, find themselves, from time to time, in need of mental health services.

South Africa's equity legislation demands the incorporation of persons with disabilities in the workforce. Owing to the unique challenges that these people face, they need well-developed salutogenic characteristics such as sense of coherence, self-efficacy and locus of control in order to integrate effectively into mainstream environments. The objective of the research was to explore these salutogenic constructs in the hearing-impaired adult population and to note differences between the different sub-groups within the sample (N = 63). A biographical form and combination of salutogenic questionnaires were employed to measure these constructs. Descriptive statistics and non-parametric tests were utilised to analyse the data. The results showed statistically significant inter-group differences in all three salutogenic constructs. These differences were found for age groups, onset of deafness, deafness category, primary school attended, hearing status of spouse and parents, and level of qualification. / Industrial and Organizational Psychology / M.A. (Industrial and Organisational Psychology)

South Africa's equity legislation demands the incorporation of persons with disabilities in the workforce. Owing to the unique challenges that these people face, they need well-developed salutogenic characteristics such as sense of coherence, self-efficacy and locus of control in order to integrate effectively into mainstream environments. The objective of the research was to explore these salutogenic constructs in the hearing-impaired adult population and to note differences between the different sub-groups within the sample (N = 63). A biographical form and combination of salutogenic questionnaires were employed to measure these constructs. Descriptive statistics and non-parametric tests were utilised to analyse the data. The results showed statistically significant inter-group differences in all three salutogenic constructs. These differences were found for age groups, onset of deafness, deafness category, primary school attended, hearing status of spouse and parents, and level of qualification. / Industrial and Organizational Psychology / M.A. (Industrial and Organisational Psychology)

Cochlear implants (CIs) and auditory brainstem implants (ABIs) are prostheses for hearing used in patients with profound hearing impairment. A CI requires an operational cochlear nerve to function in contrast to an ABI. ABIs were initially designed for adult patients with neurofibromatosis type 2 (NF2), suffering from bilateral vestibular schwannomas. Now ABIs are also used for patients, both adults and children, with congenital cochlear malformations, cochlear nerve hypoplasia/aplasia, and cochlear ossification. The aims of this thesis are to evaluate hearing outcome in patients implanted with a CI after long-term deafness. An extended period of deafness has earlier been considered as a contraindication for CI surgery. Further, we analyzed if electrically evoked auditory brainstem responses (eABRs) can predict CI outcome and pinpoint the optimal selection of treatment such as CI or ABI. We also disclose our experiences from ABI surgery in Uppsala, such as implant use, hearing outcome, complications, and satisfaction among the patients. Finally, we evaluated the results and benefits of ABIs in non-NF2 pediatric patients. Results show that patients with an extended deafness period and durations over 20 years can achieve speech understanding and benefit from CIs. Patients with long-term deafness and limited years of hearing before deafness did not perform as well as those with shorter deafness duration and longer hearing experience did. eABR seems to have a definite role in the diagnostic armamentarium, to better consider alternative surgical strategies such as ABI. No eABR waveform predicted a poor CI outcome. There was no correlation between speech perception and eABR waveform latencies or eABR waveform quality. A majority of the ABI patients used their ABIs and benefited from them for at least some period. ABI assisted voice control in a majority of the full-time users and they reported improved understanding of speech with the implant switched on. No severe complications from ABI surgery or ABI stimulation were noted. The patients were generally satisfied, even if their hearing remained very limited. All pediatric patients but one used the implant continuously and benefited from it.

published_or_final_version / Speech and Hearing Sciences / Master / Master of Science in Audiology