The Impact Of COVID-19 Lockdown on Parents Handling Children with Disability in Chennai, India

Introduction: Millions around the globe were directly or indirectly affected by COVID-19 pandemic. The COVID-19 epidemic has harmed the lives of children with special needs in many ways, whether directly or in-directly. Few studies have evaluated the Impact of covid-19 lockdown among children with disability. Howev-er, the Impact of COVID on parents dealing with special children was scarcely studied in detail. Investigating parental stress, worries, and morbidity during the lockdown is particularly important for assisting these par-ents during further outbreaks. The aim is to assess the Impact of covid-19 lockdown among parents handling disabled children, parenting stress, their concerns, and morbidity during the COVID-19 lockdown.Materials And Method: The study was done among the parents of disabled children attending special schools in Chennai, using a cross-sectional study design. Parents with any recent trauma, mental disorders, or major diseases and undergoing treatment for themselves were excluded. After obtaining ethics approval, a semi-structured questionnaire was used to assess the Impact of the covid-19 lockdown. Collected data were ana-lyzed using SPSS v.21.Results: The study includes 305 parents, predominantly mothers (58%) and the mean age was 38.9+8.2 years. We observed that the COVID-19 lockdown impacted 149 parents (48.9%). The significant predictors for the Impact of COVID-19 lockdown were being a single parent [AOR-2.91(95%CI- 1.05-8.08)] and having a part-time job [AOR-0.36(95%CI- 0.14-0.93)]. Conclusion: The COVID-19 outbreak and lockdown significantly impacted the parents of disabled children. It is high time we give importance to these parents of children with special needs during this pandemic to help them during similar occasions in the future.

Comportamiento de las discapacidades en el Consejo Popular Hermanos Barcón, septiembre - diciembre de 2020 / Behavior of disabilities at Hermanos Barcon People's Council, September-December 2020

RESUMEN Introducción: las discapacidades constituyen un importante problema de salud y social a nivel mundial. Objetivo: determinar el comportamiento de las discapacidades en el Consejo Popular Hermanos Barcón de Pinar del Río de septiembre a diciembre del 2020. Métodos: se realizó una investigación epidemiológica, descriptiva y transversal. El universo lo integraron las 479 personas con discapacidades, se investigó a la totalidad de los mismos. La información se obtuvo de las historias de salud familiar e individuales de los consultorios médicos. Se realizó un análisis univariado de las variables con el empleo de la estadística descriptiva y se estimaron las tasas de prevalencia de discapacidades general, por grupos de edades, sexo y de cada una de las discapacidades. Se calcularon intervalos de confianza de 95 % de confiabilidad para las respectivas tasas y se calcularon las frecuencias absolutas y los porcentajes. Resultados: se encontró una tasa de prevalencia global de las discapacidades de 3,9 por cada 100 habitantes, prealeció en el grupo de 60 años y más con 8,7 y en el sexo masculino con 4,2. La tasa de discapacidad intelectual fue 1,4 y en las físico motoras de 1,1. Las causas posnatales ocuparon el 67,6 %. Conclusiones: la prevalencia global de las discapacidades fue baja, las que incrementaron con la edad. Fueron frecuentes en el sexo masculino. Predominaron las discapacidades intelectuales y las físico motoras, prevalecieron las causas posnatales.

ABSTRACT Introduction: disabilities constitute an important health and social problem worldwide. Objective: to determine the behavior of disabilities at Hermanos Barcon People's Council in Pinar del Rio from September to December 2020. Methods: an epidemiologic, descriptive and cross-sectional research was conducted. The target group comprised 479 disabled people, including them all in the research. The information was collected through the analysis of the familial and individual health history from the Doctors' Offices. A univariate analysis of the variables was conducted applying descriptive statistics and estimation of the rate of prevalence for the general disabilities per group of ages, sex and each of the disabilities. The intervals of confidence of 95 % of confidentiality were calculated for the respective rates, as well as the calculation of the absolute frequencies and percentages. Results: it was found a rate of global prevalence of disabilities 3,9 per each 100 inhabitants, most frequent in the group of 60 years and older with 8,7 and male sex with 4,2. The rate of intellectual disability was 1,4 and physical-motor 1,1 Postnatal causes reached 67,6 %. Conclusions: the global prevalence of disabilities was low, increasing with age, most frequent in male sex. Intellectual and physical-motor disabilities predominated, postnatal causes prevailed.

Evaluation of microbial contamination and efficacy of antimicrobial agents in disinfection of handicapped patients' toothbrushes

This study aimed to evaluate the contamination of toothbrushes usedby patients with disabilities, by microbial culture and cariogenic biofilm formation,and to explore two methods of disinfection. Methods: Experimental procedures were divided into three stages, with the same interval between each stage. In the first stage, the patients brushed their teeth, rinsed them with water, and their toothbrushes were sprayed with sterilized tap water. In the second and third stages, the steps were similar to those of Stage I, except the toothbrushes were sprayed with 0.12% chlorhexidine and 0.05% cetylpyridinium chloride solutions, respectively. At the end of each stage, the toothbrush bristles were cultured in bacitracin sucrose broth (CaSaB) medium. Data were analyzed through Friedman's nonparametric test (5% significance level). Results: In Stage I, mutans group streptococci (MS) were present in 30 toothbrushes (76.9%), and the number of colonies/biofilms ranged from 0 to +100. In Stage II, no MS colonization was observed. In Stage III, only 10.2% of the toothbrushes were contaminated with MS, and the number of colonies/biofilms ranged from 1 to 31. Conclusion: Bristles of toothbrushes used by patients with disabilities became contaminated with MS after a single brushing. The 0.12% chlorhexidine solution eliminated all microorganisms from the bristles of the toothbrushes used by the patients. Both 0.12% gluconate chlorhexidine and 0.05% cetylpyridinium chloride spray solutions can effectively be used for toothbrush disinfection to reduce contamination.

Objetivo: O presente estudo teve como objetivo avaliar a contaminação de escovas de dente utilizadas por pacientes especiais, por meio de cultura microbiana e formação de biofilme cariogênico, explorando dois métodos de desinfecção. Métodos: O estudo foi dividido em três estágios, com o mesmo intervalo de tempo entre cada estágio. No primeiro estágio, os pacientes escovaram os dentes e enxaguaram com água, em seguida, suas escovas foram borrifadas com água destilada. No segundo e terceiro estágios, as etapas foram semelhantes às do estágio I, exceto que as escovas de dente foram borrifadas com soluções de clorexidina 0,12% e cloreto de cetilpiridínio 0,05%, respectivamente. Ao final de cada etapa, as cerdas das escovas de dente foram cultivadas em meio de Caldo Sacarose Bacitracina (CaSaB). Os dados foram analisados por meio do teste não paramétrico de Friedman (nível de significância de 5%). Resultados: No estágio I, os estreptococos do grupo mutans (EM) estavam presentes em 30 escovas de dente (76,9%), e o número de colônias / biofilmes variou de 0 a +100. No estágio II, nenhuma colonização por MS foi observada. No estágio III, apenas 10,2% das escovas de dente estavam contaminadas com MS, e o número de colônias / biofilmes variou de 1 a 31. Conclusão: As cerdas das escovas de dente utilizadas por pacientes especiais contaminaram-se com EM após uma única escovação. A solução de clorexidina 0,12% eliminou todos os microrganismos das cerdas das escovas de dente utilizadas pelos pacientes. Ambas as soluções em spray (gluconatode clorexidina 0,12% e cloreto de cetilpiridínio 0,05%) podem ser utilizadas com eficácia para desinfecção das escovas de dente para reduzir a contaminação.

O Poder Judiciário e o acesso ao Sistema de Frequência Modulada: uma análise sobre a efetivação das políticas públicas em saúde auditiva / The Judiciary and access to the Frequency Modulation System: an analysis of the effectiveness of public policies on hearing health

RESUMO Objetivo conhecer como se deu o processo de criação de políticas públicas em saúde auditiva no Brasil, bem como a influência do Poder Judiciário na concretização do acesso, pela pessoa com deficiência auditiva, ao Sistema de Frequência Modulada (Sistema FM) e para utilização em ambiente escolar. Métodos estudo qualitativo exploratório, por meio do qual foi realizado, inicialmente, um levantamento normativo nos sítios eletrônicos da Presidência da República, Câmara dos Deputados e Ministério da Saúde, visando identificar, no período compreendido entre outubro de 1988 e outubro de 2019, a existência de normas que versassem sobre a criação de políticas públicas em saúde auditiva. Foi realizado, em complemento, levantamento jurisprudencial nos sítios eletrônicos de Tribunais de Justiça, Tribunais Regionais Federais e Tribunais Superiores, visando identificar, no período compreendido entre janeiro de 2000 e outubro de 2019, a existência de decisões judiciais que versassem sobre acesso ao Sistema FM, via Sistema Único de Saúde (SUS). Resultados foi possível identificar dez instrumentos normativos que tratavam, especificamente, da criação de políticas públicas em saúde auditiva, além de seis decisões judiciais, cujos méritos consistiam, propriamente, no acesso ao Sistema FM, via SUS. Conclusão o Poder Judiciário tem papel fundamental na concretização do acesso ao Sistema FM pela pessoa com deficiência auditiva, uma vez que sua atuação suprime omissões dos outros Poderes e impede que políticas públicas já concebidas contemplem restrições contrárias à Constituição Federal.

ABSTRACT Purpose to know how the process of creating public policies on Hearing Health in Brazil, and the influence of the Judiciary Power for the access by the hearing impaired person and the use in the school environment, concerning the Frequency Modulation (FM) System. Methods an exploratory qualitative study through which a normative survey was initially carried out - on the websites of the Presidency, the Chamber of Deputies and the Ministry of Health - aiming to identify, from October 1988 to October 2019, the existence of norms dealing with the creation of public policies on Hearing Health. Also, a jurisprudential survey was carried out - on the websites of Courts of Justice, Federal Regional Courts, and Superior Court of Justice - to identify the existence of court decisions dealing with access to the FM System via the Unified Health System in the period from January 2000 to October 2019. Results We identified ten normative instruments that dealt specifically with the creation of public policies on Hearing Health, as well as six court decisions whose merits consisted of access to the FM System via the Unified Health System. Conclusion The Judiciary has a fundamental role in achieving access to the FM System for people with hearing impairment since its performance suppresses omissions provided by other Powers and prevents public policies already designed to contemplate restrictions contrary to the Federal Constitution.

El conocimiento sobre salud bucal de padres y maestros de la Escuela especial La Edad de Oro / Oral health knowledge of parents and teachers at La Edad de Oro special school

RESUMEN Introducción: los escolares discapacitados se caracterizan por presentar numerosos factores de riesgo asociados a diversas enfermedades bucales. En esta etapa se requiere de la participación de padres y educadores que les enseñen hábitos básicos para el cuidado de la salud bucal. Objetivo: evaluar el nivel de conocimiento en salud bucal de padres y educadores. Métodos: se realizó un estudio transversal en la escuela primaria especial La Edad de Oro, de Holguín, de enero a abril de 2016. El universo estuvo constituido por 203 adultos y la muestra por 126. Se aplicó un cuestionario con temas relacionados con la higiene bucal, la dieta cariogénica y los hábitos bucales deformantes. Resultados: el nivel de conocimiento sobre salud bucal fue regular en el sexo femenino, en el 71,6%, y en el masculino fue malo, en el 46,7%. De acuerdo con el nivel de escolaridad, el de secundaria presentó nivel de conocimiento malo (53,3%); sólo el 8,6% de los adultos obtuvo mal. Se desconocían hábitos bucales deformantes, como la deglución atípica, la queilofagia y los hábitos posturales, en el 91,3%, el 90,5% y el 85,7% de los participantes, respectivamente. Conclusiones: los padres y educadores de los niños discapacitados presentaron en su mayoría, niveles de conocimientos regulares sobre salud bucal.

ABSTRACT Introduction: handicapped children may present different symptoms of several buccal diseases. Parents and teachers concern are required in order to teach them basic habits to keep a good oral health. Objective: to evaluate parents and teachers level of knowledge about oral health. Method: a cross sectional research at La Edad de Oro Special Primary School, was carried out in Holguín from January to April 2016. Universe was 203 adults and sample 126. A survey including several topics related to oral hygiene, cariogenic diet and deformation of buccal habits, was applied. Results: the level of knowledge about oral health was regular for females (71.6%) and it was bad for males (46.7%). High level participants presented bad knowledge with 53.3 % and only 8.6% showed a poor knowledge level. Deforming oral habits suchs as: atypical swallowing (91.3%), cheilophagia (90.5%) and postural habits (85.7%) were ignored by the participants at these levels. Conclusions: most handicapped children's parents and teachers showed regular knowledge levels about oral health.

Pessoas com deficiência no caminho da democracia participativa / Disabled persons on the way to participatory democracy

Resumo O presente artigo objetiva discutir sobre a participação social das pessoas com deficiência e o exercício do controle social nas Organizações, Associações, Grupos e Conselho específicos do segmento. Para tanto, o estudo constrói uma relação entre a compreensão sobre deficiência, a questão da representatividade e o protagonismo desse segmento na luta por direitos e no controle social das políticas públicas. Traz como chave de leitura as concepções de democracia participativa e controle social; as diferentes perspectivas de compreender a deficiência e as concepções de Hannah Arendt para espaço público e privado. Trata-se de um estudo exploratório, realizado com Organizações DE e PARA pessoas com deficiência, através de entrevistas semiestruturadas com coordenadores e presidentes; observação participante de reuniões, encontros e assembleias; pesquisa documental sobre leis e decretos vigentes em âmbito municipal e nacional, Conferências locais de educação, saúde e assistência social, estatutos, folders, atas e cartilhas produzidos pelas Organizações e por meio da construção de um diário de campo. Os resultados e discussões abordam a realidade de um município específico, todavia, também se balizam pelo contexto nacional da luta organizada pelos direitos da pessoa com deficiência. As representações sociais da deficiência, atreladas à dinâmica de funcionamento e gestão das Organizações e às mudanças no contexto dos movimentos sociais formados nas ruas, nos espaços públicos e privados apresentam, ao mesmo tempo, fragilidades e potencialidades na defesa e fortalecimento da participação das pessoas com deficiência nos processos decisórios.

Abstract This article aims to discuss the social participation of disabled persons and the exercise of social control in the specific Organizations, Associations, Groups and Council of the segment. For this, the study builds a relationship between: understanding about disability, the issue of representativeness and the role of this segment in the struggle for rights and in the social control of public policies. And it brings as a key reading the conceptions of participatory democracy, social control; the different perspectives of understand the deficiency and the conceptions of Hannah Arendt for public and private space. This is an exploratory study carried out with organizations OF and FOR disabled persons, through semi-structured interviews with coordinators and presidents; participant observation of meetings and assemblies; documentary research on municipal and national laws and decrees, municipal conferences on education, health and social assistance, statutes, folders, minutes and leaflets produced by the Organizations and through the construction of a field diary. The results and discussions approach the reality of a specific municipality, however, are also marked by the national context of the struggle organized by the rights of disabled persons. The social representations of disability, coupled with the dynamics of the functioning and management of the Organizations and the changes in the social movements formed in the streets, in the public and private spaces, present, at the same time, weaknesses and potentialities in the defense and strengthening of the participation of disabled persons in decision-making processes.

Políticas públicas de esporte e lazer para pessoas com deficiência / Sport and leisure policies for people with disabilities / Políticas públicas de deporte y ocio para personas con discapacidad

Estudos brasileiros sobre políticas públicas de esporte e lazer são incipientes, principalmente aqueles que abordam as pessoas com deficiência. A temática é complexa e, embora este estudo traga o contexto específico de um município do estado de São Paulo, buscou-se uma visão ampliada sobre a constituição dos programas esportivos e demais políticas públicas a partir da compreensão da organização (polity), das disputas internas (politics), da política pública resultante (policy) e dos atores que compõem a rede (policy network). No mapeamento e entrevistas com gestores e profissionais, foram identificados três programas e cinco modalidades adaptadas às pessoas com deficiência. Mesmo sem uma política intersetorial articulada e as relações entre os atores sendo, predominantemente, informais até então, o surgimento de demanda, a organização social e a sensibilidade dos órgãos competentes para articularem condições,instituições e pessoas capazes do enfrentamento da questão foram pontos-chave para o desenvolvimento das ações

Brazilian studies about policies for sport and leisure are incipient, especially those addressing people with disabilities. The subject is complex and although this study approaches the specific context of a municipality in the state of São Paulo, it sought to provide an expanded view on the constitution of sports programs and other public policies by understanding the organization (polity), internal disputes (politics), the resulting guidelines (policy), and the actors that make up the network (policy network). Mapping and interviews with managers and professionals found three programs and five sports adapted to people with disabilities. Even without coordinated inter-sector policies and with relationships among actors being predominantly informal so far, the emergence of demand, social organization, and sensitivity of competent agencies to coordinate conditions, institutions and people capable of facing the issue were the key points for developing the actions

Los estudios brasileños sobre políticas públicas de deporte y ocio son incipientes, especialmente aquellos sobre las personas con discapacidad. El tema es complejo, y aunque este artículo aporte el contexto específico de un municipio del estado de São Paulo, se buscó una visión ampliada sobre la constitución de los programas deportivos y demás políticas públicas desde la comprensión de la organización (polity), de las disputas internas (politics), de la política pública resultante (policy) y de los actores que componen la red (policy network). En el mapeo y entrevistas con los gestores y profesionales se identificaron tres programas y cinco modalidades adaptadas para personas con discapacidad. Incluso sin una política intersectorial articulada y pese a que las relaciones entre los actores son, predominantemente, informales, el surgimiento de la demanda, la organización social y la sensibilidad de los órganos competentes para articular condiciones, instituciones y personas capaces de enfrentar el problema fueron puntos clave para el desarrollo de acciones

Barreras a la expresión del sufrimiento en personas con esclerosis múltiple de Medellín, Colombia / Barriers to the expression of suffering in people with multiple sclerosis in Medellín, Colombia / Barreiras à expressão do sofrimento em pessoas com esclerose múltipla de Medellín, Colômbia

Objetivo: Comprender las barreras a la expresión del sufrimiento, que encuentran algunas personas con esclerosis múltiple, atendidas en el Instituto Neurológico de Colombia de Medellín. Materiales y método: Estudio basado en un paradigma construccionista y hermenéutico, con enfoque narrativo, de tipo polifónico, en el que durante los años 2015 y 2016, se entrevistaron a profundidad a cinco personas con esclerosis múltiple, dos de sus cuidadores y dos profesionales tratantes. Se construyó una narración polifónica para cada participante, se analizaron sus historias de vida y se extrajeron relatos en los que se aprecia exigencia social y personal de ocultar sus sufrimientos. Resultados: En estos relatos se evidenció un pedido constante de fortaleza ante sus di cultades y una tendencia a mostrar que pueden continuar realizando sus actividades cotidianas como lo hacían antes de enfermar, pese al aumento de la discapacidad. Eso se aprecia igualmente en los relatos de sus cuidadores, quienes también ocultan sus sentimientos y el desgaste generados en la labor de cuidar. Conclusiones: Estos pedidos de fortaleza pueden deberse a la tendencia contemporánea de sobrevalorar la tenacidad personal y de buscar constantemente el bienestar y la felicidad, lo cual conlleva una exigencia de mostrarse como individuos capaces en todo momento. Ante esa situación, de quienes presentan condiciones discapacitantes, como la esclerosis múltiple, se espera que sean ejemplo de superación de las adversidades, lo cual re eja un rechazo cultural del sufrimiento y a aceptar la fragilidad humana. Esta situación puede constituirse en un estigma hacia las personas con esclerosis múltiple.

Objective: To understand the barriers to the expression of suffering, found by some people with multiple sclerosis treated at the Instituto Neurológico de Colombia [Neurological Institute of Colombia] in Medellin. Materials and Method: Study based on a constructionist and hermeneutic paradigm, with a polyphonic type narrative approach in which, during 2015 and 2016, ve people with multiple sclerosis, two of their caregivers, and two treating professionals were interviewed in depth. A polyphonic narration was constructed for each participant, their life histories were analyzed, and stories were extracted in which social and personal demand to hide their suffering is visible. Results: In these stories a constant period of strength to dif culties was evidenced and a tendency to show that they can continue doing their daily activities as they did before getting sick despite the increase in disability. This is as well evident in the stories of their caregivers, who also hide their feelings and the exhaustion generated by the caring work. Conclusions: These requests for strength may be due to the contemporary tendency to overvalue personal tenacity and to constantly seek welfare and happiness, which entails a demand of showing themselves as capable individuals at all times. Given this situation for those having disabling conditions such as multiple sclerosis, it is expected that they become an example of overcoming adversity, which re ects a cultural rejection to suffering and to accept human fragility. This situation can become a stigma towards people with multiple sclerosis.

Objetivo: Compreender as barreiras à expressão do sofrimento, que encontram algumas pessoas com esclerose múltipla, atendidas no Instituto Neurológico de Colômbia de Medellín. Materiais e método: Estudo baseado em num paradigma construcionista e hermenêutico, com enfoque narrativo, de tipo polifônico, no que durante os anos 2015 e 2016, se entrevistaram a profundidade a cinco pessoas com esclerose múltipla, dois de seus cuidadores e dois pro ssionais tratantes. Construiu se umas narrações polifônicas para cada participante analisaram se suas historias de vida e se extraíram relatos nos que se aprecia exigência social e pessoal de ocultar seus sofrimentos. Resultados: Nestes relatos se evidenciou um pedido constante de fortaleça ante suas di culdades e uma tendência a mostrar que podem continuar realizando suas atividades cotidianas como o faziam antes de adoecer, a pesar do aumento da de ciência. Isso se observa igualmente nos relatos de seus cuidadores, quem também ocultam seus sentimentos e o desgaste gerados no labor de cuidar. Conclusões: Estes pedidos de fortaleça podem dever- se à tendência contemporânea de sobre valorar a tenacidade pessoal e de buscar constantemente o bem estar e a felicidade, o qual envolve uma exigência de mostrar se como indivíduos capazes em todo momento. Ante essa situação, de quem apresenta condições de cientes, como a escleroses múltiple, se espera que sejam exemplo de superação das adversidades, a qual re exa uma rejeição cultural do sofrimento e aceitar a fragilidade humana. Esta situação pode constituir se em um estigma para as pessoas com esclerose múltipla.

Qualidade de vida relacionada à saúde bucal de indivíduos com mucopolissacaridoses: um estudo transversal pareado / Perceptions of parents and caregivers on the oral health-related quality of life of individuals with mucopolysaccharidosis: a paired crosssectional study

As mucopolissacaridoses (MPS) representam um grupo de doenças genéticas metabólicas causadas por uma inadequação enzimática nos lisossomos do organismo relacionada aos erros inatos do metabolismo. Acarreta diversas alterações físicas, motoras e intelectuais. Dentre as alterações físicas, muitas estão presentes na face e na cavidade bucal. Na área odontológica são poucos os estudos relacionados às MPS. Ainda são insuficientes as informações sobre as características oclusofaciais presentes nos indivíduos diagnosticados com a anomalia e o impacto que essas características podem provocar na qualidade de vida dessa parcela da população. Este estudo objetivou comparar a percepção dos pais/responsáveis de indivíduos com MPS e sem MPS sobre a qualidade de vida relacionada à saúde bucal (QVRSB) desses indivíduos. Foi desenvolvido um estudo transversal, pareado, com 29 indivíduos com MPS e 29 sem MPS, na faixa etária de 3 a 21 anos, e os pais/responsáveis. Foram convidados a participar da pesquisa todos os pais/responsáveis por indivíduos diagnosticados com MPS atendidos pelo Ambulatório de Erros Inatos do Metabolismo do Hospital das Clínicas da Universidade Federal de Minas Gerais (UFMG) e pelo Hospital João Paulo II, ambos localizados em Belo Horizonte, região sudeste do Brasil. Os indivíduos sem MPS foram selecionados no setor de pediatria e de adolescente de ambos os hospitais. Aqueles pais/responsáveis que concordaram em participar assinaram o termos de consentimento livre e esclarecido. Este estudo foi aprovado pelo Comitê de Ética em Pesquisa da UFMG. A coleta de dados foi realizada em uma das clínicas da Faculdade de Odontologia da UFMG. Os pais/responsáveis respoderam um questionário estruturado abordando questões relacionadas ao tema do estudo e a versão brasileira curta do Parental-Caregiver Perceptions Questionnaire (P-CPQ), que mensura a QVRSB dos filhos na pespectiva dos pais. Em seguida a pesquisadora realizou o exame clínico dos indivíduos com MPS e sem MPS e investigou as seguintes condições: má oclusão, cárie dentária e higiene bucal. A examinadora foi previamente calibrada, sendo obtidos valores kappa entre 0,76 e 0,98. O estudo principal foi conduzido após a fase de calibração e estudo piloto. Os dados foram analisados por meio do software Statistical Package for Social Science - SPSS® (versão 21.0). Foi realizada a análise univariada e bivariada dos dados (p<0,05). Os resultados foram apresentados por meio de artigo científico. A média de idade dos indivíduos examinados foi de 12,1 anos (± 4,2). A faixa etária dos pais/responsáveis variou de 23 a 59 anos, com média de 40,9 anos (± 9,0). Comparando os resultados dos domínios "sintomas orais", "limitação funcional" e "bem estar", assim como o escore total do instrumento, houve uma associação estatisticamente significativa da percepção dos pais em relação ao impacto negativo das condições bucais na QVRSB de indivíduos com MPS (p<0,005). A prevalência de má oclusão dos indivíduos com MPS foi estatisticamente associada com os domínios "sintomas orais", "limitação funcional", "bem-estar e com o "escore total do instrumento" P-CPQ (p<0,05). Concluiu-se que indivíduos com MPS apresentaram um impacto negativo maior na QVRSB quando comparados aos indivíduos sem MPS. A presença de má oclusão apresentou maior impacto sobre a QVRSB dos indivíduos com MPS sob a perspectiva dos pais.

Mucopolysaccharidosis (MPS) is a group of genetic metabolic diseases caused by an enzymatic inadequacy in lysosomes of the organism related to inborn errors of metabolism. It involves various physical, motor and intellectual abnormalities. Among the physical alterations, many are present in the face and in the oral cavity. There are few studies in the area of dentistry dedicated to MPS, and information regarding the oral characteristics present in those diagnosed with the disease and the impact that these characteristics can have on the oral health related quality of life of such of such individuals remains insufficient. This study aimed to compare the perception of the parents / caregivers of individuals with MPS and without MPS regarding the oral health related quality of life (OHRQoL) of of these individuals. A paired cross-sectional study was performed of 29 individuals with MPS and 29 without MPS, age from 3 to 21 years, and the parents/ caregivers. All the parents / caregivers of individuals with MPS attended by two reference hospitals in MPS care in Belo Horizonte, southeastern of Brazil, were invited to participate in the study. Individuals without MPS were selected at the pediatric and adolescent clinic of both hospitals. Data collection was carried out in one of the clinics of the Faculty of Dentistry of Federal University of Minas Gerais. The parents / caregivers respond to a structured questionnaire addressing issues related to the study theme and the short Brazilian version of the Parental-Caregiver Perceptions Questionnaire (P-CPQ), which measures the children's OHRQoL from the perspective of the parents. The researcher then performed the clinical examination of individuals with MPS and without MPS and investigated the following conditions: malocclusion, dental caries and oral hygiene. The examiner was previously calibrated, presenting kappa values ranging from 0.76 to 0.98. The main study was conducted after the calibration and pilot study. Data were analyzed using the software Statistical Package for Social Science (SPSS) (version 21.0). The Research Ethics Committee of the Federal University of Minas Gerais approved the study. The results were presented by scientific manuscript. The mean age of the subjects examined was 12.1 years (± 4.2). The age range of the parents / caregivers ranged from 23 to 59 years, with a mean of 40.9 years (± 9.0). Comparing the results of the domains of oral symptoms, functional limitation, well-being and instrument total, there was a statistically significant association, regarding the perception of parents about negative impact of oral characteristics on the OHRQoL of individuals with MPS (p<0001). The prevalence of malocclusion of individuals with MPS was statistically significant for the oral symptoms, functional limitation, well-being domains and instrument total (p <0.05). We concluded that individuals with MPS have a greater negative impact on the OHRQoL compared to individuals without MPS. The prevalence of malocclusion had a greater impact on the OHRQoL of individuals with MPS.

Qualidade de vida relacionada à saúde bucal de indivíduos com mucopolissacaridoses: um estudo transversal pareado / Perceptions of parents and caregivers on the oral health-related quality of life of individuals with mucopolysaccharidosis: a paired crosssectional study

As mucopolissacaridoses (MPS) representam um grupo de doenças genéticas metabólicas causadas por uma inadequação enzimática nos lisossomos do organismo relacionada aos erros inatos do metabolismo. Acarreta diversas alterações físicas, motoras e intelectuais. Dentre as alterações físicas, muitas estão presentes na face e na cavidade bucal. Na área odontológica são poucos os estudos relacionados às MPS. Ainda são insuficientes as informações sobre as características oclusofaciais presentes nos indivíduos diagnosticados com a anomalia e o impacto que essas características podem provocar na qualidade de vida dessa parcela da população. Este estudo objetivou comparar a percepção dos pais/responsáveis de indivíduos com MPS e sem MPS sobre a qualidade de vida relacionada à saúde bucal (QVRSB) desses indivíduos. Foi desenvolvido um estudo transversal, pareado, com 29 indivíduos com MPS e 29 sem MPS, na faixa etária de 3 a 21 anos, e os pais/responsáveis. Foram convidados a participar da pesquisa todos os pais/responsáveis por indivíduos diagnosticados com MPS atendidos pelo Ambulatório de Erros Inatos do Metabolismo do Hospital das Clínicas da Universidade Federal de Minas Gerais (UFMG) e pelo Hospital João Paulo II, ambos localizados em Belo Horizonte, região sudeste do Brasil. Os indivíduos sem MPS foram selecionados no setor de pediatria e de adolescente de ambos os hospitais. Aqueles pais/responsáveis que concordaram em participar assinaram o termos de consentimento livre e esclarecido. Este estudo foi aprovado pelo Comitê de Ética em Pesquisa da UFMG. A coleta de dados foi realizada em uma das clínicas da Faculdade de Odontologia da UFMG. Os pais/responsáveis respoderam um questionário estruturado abordando questões relacionadas ao tema do estudo e a versão brasileira curta do Parental-Caregiver Perceptions Questionnaire (P-CPQ), que mensura a QVRSB dos filhos na pespectiva dos pais. Em seguida a pesquisadora realizou o exame clínico dos indivíduos com MPS e sem MPS e investigou as seguintes condições: má oclusão, cárie dentária e higiene bucal. A examinadora foi previamente calibrada, sendo obtidos valores kappa entre 0,76 e 0,98. O estudo principal foi conduzido após a fase de calibração e estudo piloto. Os dados foram analisados por meio do software Statistical Package for Social Science - SPSS® (versão 21.0). Foi realizada a análise univariada e bivariada dos dados (p<0,05). Os resultados foram apresentados por meio de artigo científico. A média de idade dos indivíduos examinados foi de 12,1 anos (± 4,2). A faixa etária dos pais/responsáveis variou de 23 a 59 anos, com média de 40,9 anos (± 9,0). Comparando os resultados dos domínios "sintomas orais", "limitação funcional" e "bem estar", assim como o escore total do instrumento, houve uma associação estatisticamente significativa da percepção dos pais em relação ao impacto negativo das condições bucais na QVRSB de indivíduos com MPS (p<0,005). A prevalência de má oclusão dos indivíduos com MPS foi estatisticamente associada com os domínios "sintomas orais", "limitação funcional", "bem-estar e com o "escore total do instrumento" P-CPQ (p<0,05). Concluiu-se que indivíduos com MPS apresentaram um impacto negativo maior na QVRSB quando comparados aos indivíduos sem MPS. A presença de má oclusão apresentou maior impacto sobre a QVRSB dos indivíduos com MPS sob a perspectiva dos pais

Mucopolysaccharidosis (MPS) is a group of genetic metabolic diseases caused by an enzymatic inadequacy in lysosomes of the organism related to inborn errors of metabolism. It involves various physical, motor and intellectual abnormalities. Among the physical alterations, many are present in the face and in the oral cavity. There are few studies in the area of dentistry dedicated to MPS, and information regarding the oral characteristics present in those diagnosed with the disease and the impact that these characteristics can have on the oral health related quality of life of such of such individuals remains insufficient. This study aimed to compare the perception of the parents / caregivers of individuals with MPS and without MPS regarding the oral health related quality of life (OHRQoL) of of these individuals. A paired cross-sectional study was performed of 29 individuals with MPS and 29 without MPS, age from 3 to 21 years, and the parents/ caregivers. All the parents / caregivers of individuals with MPS attended by two reference hospitals in MPS care in Belo Horizonte, southeastern of Brazil, were invited to participate in the study. Individuals without MPS were selected at the pediatric and adolescent clinic of both hospitals. Data collection was carried out in one of the clinics of the Faculty of Dentistry of Federal University of Minas Gerais. The parents / caregivers respond to a structured questionnaire addressing issues related to the study theme and the short Brazilian version of the Parental-Caregiver Perceptions Questionnaire (P-CPQ), which measures the children's OHRQoL from the perspective of the parents. The researcher then performed the clinical examination of individuals with MPS and without MPS and investigated the following conditions: malocclusion, dental caries and oral hygiene. The examiner was previously calibrated, presenting kappa values ranging from 0.76 to 0.98. The main study was conducted after the calibration and pilot study. Data were analyzed using the software Statistical Package for Social Science (SPSS) (version 21.0). The Research Ethics Committee of the Federal University of Minas Gerais approved the study. The results were presented by scientific manuscript. The mean age of the subjects examined was 12.1 years (± 4.2). The age range of the parents / caregivers ranged from 23 to 59 years, with a mean of 40.9 years (± 9.0). Comparing the results of the domains of oral symptoms, functional limitation, well-being and instrument total, there was a statistically significant association, regarding the perception of parents about negative impact of oral characteristics on the OHRQoL of individuals with MPS (p<0001). The prevalence of malocclusion of individuals with MPS was statistically significant for the oral symptoms, functional limitation, well-being domains and instrument total (p <0.05). We concluded that individuals with MPS have a greater negative impact on the OHRQoL compared to individuals without MPS. The prevalence of malocclusion had a greater impact on the OHRQoL of individuals with MPS.

Association between Satisfaction with Assistive Technology Devices and Psychosocial Impact among Some Mentally or Physically Disabled Children / 農村醫學 地域保健

OBJECTIVES: The purpose of this study was to identify the association between satisfaction with assistive technology devices and psychosocial impact among some mentally or physically disabled children. METHODS: The study subjects were 120 disabled children and their primary caregivers who were using rental assistive technology devices in Gwangju and Jeollanam-Do. Data were collected by structured questionnaire composed of general characteristics of subjects, characteristics related with using assistive devices. Quebec User Evaluation of Satisfaction with assistive Technology 2.0 (QUEST 2.0) and Psychosocial Impact of Assistive Device Scale (PIADS). The statistical analysis were performed by descriptive statistics, t-test, ANOVA and Pearson's correlational analysis. RESULTS: The total mean score for QUEST 2.0 was 4.08±0.66 (satisfaction with devices, 4.01±0.70; satisfaction with the assistive devices service, 4.14±0.90) and the mean of PIADS was 1.00±0.75 (ability, 0.99±0.78; adaptability, 1.04±0.86; self-respect, 0.99±0.74). The scores of PIADS was statistically significant difference according to usage time of assistive devices. The PIADS was significantly positive correlated with QUEST 2.0 CONCLUSIONS: The mentally or physically disabled children reported that the higher level of satisfaction and the more positive impact of psychosocial aspect with assistive technology devices. It would be necessary to perform further studies for addressing the effects of assistive technology devices.

The use of general anesthesia to facilitate dental treatment in adult patients with special needs

General anesthesia is commonly used to facilitate dental treatment in patients with anxiety or challenging behavior, many of whom are children or patients with special needs. When performing procedures under general anesthesia, dental surgeons must perform a thorough pre-operative assessment, as well as ensure that the patients are aware of the potential risks and that informed consent has been obtained. Such precautions ensure optimal patient management and reduce the frequency of morbidities associated with this form of sedation. Most guidelines address the management of pediatric patients under general anesthesia. However, little has been published regarding this method in patients with special needs. This article constitutes a review of the current literature regarding management of patients with special needs under general anesthesia.

Survey of the sevoflurane sedation status in one provincial dental clinic center for the disabled

BACKGROUND: Sevoflurane sedation in pediatric and disabled patients has the advantage of faster induction and recovery compared to general anesthesia, as well as minimum influence on the respiratory and cardiovascular functions, and airway protective reflexes. This study aimed to evaluate the clinical efficacy of sevoflurane sedation used in dental treatment at one provincial dental clinic center for the disabled. METHODS: We investigated patients' gender, age, reasons for undergoing sedation, medication history prior to treatment, duration of anesthesia, treatment length, type of treatment, and yearly patterns, for 387 cases of dental treatment performed using sevoflurane sedation from January 2013 to October 2016. RESULTS: We analyzed 387 cases (215 male patients, 172 female patients). Male patients aged 20 year or older accounted for 39.0% of all patients, marking the highest proportion. Patient's lack of cooperation was the most common reason for performing dental sedation. Prosthetic treatment was the most frequently practiced, accounting for 174 treatment cases. The mean lengths of the entire treatment and of the dental procedure were 55.2 min and 39.8 min, respectively. CONCLUSIONS: Sevoflurane sedation has the advantage of fast anesthesia induction and recovery compared to general anesthesia; therefore, it can be used efficiently to induce anesthesia in pediatric and disabled patients during short dental procedures, enabling stable treatment of these patients.

Self-perception of Venous Symptoms and Quality of Life Analysis in Wheelchair Athletes and Non-athletes: A Pilot Study.

Aims: Evaluate the impact of the physical activity in individuals with muscular atrophy on the inferior members (wheelchair users) considering two main aspects: the quality of life and the self-perception of the venous return symptoms. Place and Duration of Study: Data of handicapped non athletes were collected from a universitary physiotherapy clinic at the University of Ribeirão Preto, Ribeirão Preto, São Paulo, Brazil. Data of the athletes’ sample (basketball players) were obtained from Cava do Bosque, Ribeirão Preto, São Paulo, Brazil, between September 2013 and December 2013. Methodology: This is a cross-sectional study, with a convenience sampling of wheelchair users: non athletes (n=12) and athletes (n=13). A socio-demographic questionnaire was applied. Self-perception of functional performance and of venous symptoms was evaluated by the VEINES-QOL/Sym, and the quality of life was evaluated by the WHOQOL-Bref. The statistical analysis was performed by the Chi-square test for VEINES-QOL/Sym, Student’s t-test for WHOQOL-Bref and Student’s t-test, proportion test and G-test for the socio-demographic questionnaire. Results: Twenty-three subjects were men (92%). Data of physical conditions, environmental and psychological domains from WHOQOL-bref questionnaire demonstrated no significant differences between the groups. On the other hand, social relations domain had higher values in athletes compared to non athletes (P<.05). Results from VEINES-QOL/Sym questionnaire (the questions 1, 2, 3, 4(a, b, c), 5(b, c), 6, 7 and 8 showed no statistically significance between the groups. Analyzing the 4d (leisure activity) and 5a (time spent for daily activities) questions, higher values were observed for the athletes (P<.05). Conclusion: Considering the data obtained by WHOQOL/Bref survey, physical exercise improves the quality of life of wheelchair individuals. However, it has not been possible to establish the relationship between physical exercise and the improvement of self-perception on venous symptoms in wheelchair individuals.

Challenges faced by visually disabled people in use of medicines, self-adopted coping strategies and medicine-related mishaps.

Background: Difficulties faced by visually disabled people when using medicines, self-adopted coping strategies, and medicine-related mishaps have been under-explored locally and internationally. The objective of this study was to gain insight regarding this long-neglected issue. Methods: A descriptive cross-sectional study, using an interviewer administered questionnaire on 63 visually disabled adults was carried out at a vocational training centre and a school for visually disabled students in Sri Lanka. Results: Among 63 participants, 71% wanted to be independent in medicine use and 79% in spite of difficulties had self-administered medicines. They had difficulty in locating medicines (25.39%), identifying medicines and medicine containers (17.46%), and administering liquid medications (25.39%). These difficulties led to inaccurate dosing (14.28%), missed doses (39.68%), and discontinuation of treatment prematurely (28.57%). Self-adopted coping strategies to overcome these difficulties included using different sized and shaped containers, tying medicines to the attire, and dipping their finger into a measuring cup while measuring liquid medicines. Mishaps related to medicines such as taking vinegar instead of gripe mixture and, putting ear drops into eyes were disclosed. Conclusions: There were many challenges for visually disabled people in taking medicines and some self-adopted coping strategies were inadequate to overcome these.

Políticas públicas para inclusão social na deficiência - Revisão sistemática / Public Policies For Social Inclusion of Handicapped People - Systematic Review / Políticas públicas para la inclusión social en la discapacidad - revisión sistemática

Objetivo: analisar na literatura a política de inclusão social das pessoas com deficiência após a criação da Política Nacional para a integração da pessoa em situação de deficiência no Brasil. Método: Trata-se de uma revisão sistemática da produção científica brasileira contida no Banco de Dados da Scientific Electronic Library Online - SciELO. Para a seleção dos artigos foram utilizadas combinações entre os descritores seguintes: políticas públicas, inclusão social, deficiente, pessoas com deficiência e trabalho. Foram incluídos os artigos publicados em revistas nacionais entre os anos de 2000 até 2009 nas áreas de Ciências da Saúde e Ciências Humanas. Resultados: Obteve-se um total de 253 artigos, sendo selecionados 17. Para fins da análise, os resultados foram subdivididos em categorias temáticas: saúde e inclusão, educação e inclusão, e trabalho e inclusão. Discussão: Verifica-se que as ações de saúde estão direcionadas ao assistencialismo, sem aprofundar nas questões sociais. Á importante salientar que na educação, existem dificuldades para a inclusão da pessoa com deficiência no ensino público regular, bem como a falta de capacitação dos profissionais das áreas de educação e saúde para tratar estas pessoas; verifica-se também que a legislação trabalhista para as pessoas com deficiências, ainda precisam de algumas regulamentações. Conclusões: A criação de legislações e suas respectivas regulamentações não são suficientes para a efetiva inclusão social das pessoas com deficiências, sendo necessárias ações intersectoriais, conforme disposto nos princípios do Sistema Único de Saúde do Brasil para uma conscientização social sobre as potencialidades destas pessoas, provendo condições humanas e materiais que lhes permitam viver como cidadãos.

Objetivo: analizar en la literatura la política de inclusión social de las personas con deficiencia después de la creación de la Política Nacional para la integración de la Persona en situación de discapacidad en Brasil. Método: Se trata de una revisión sistemática de la producción científica brasileña constante en el banco de datos de la Scientific Electronic Library Online - SciELO. Para la selección de los artículos se utilizaron combinaciones entre los descriptores: políticas públicas, inclusión social, deficiente, personas con deficiencia y trabajo. Fueron incluidos los artículos publicados en revistas nacionales entre los años de 2000 al 2009 en las áreas de Ciencias de la Salud y Humanas. Resultados: Se obtuvo un total de 253 artículos, de los cuales fueron seleccionados 17. Para análisis se subdividieron los resultados en categorías temáticas: salud e inclusión, educación e inclusión, y trabajo e inclusión. Discusión: Se nota que las acciones de salud están direccionadas al asistencialismo, sin profundizar en las cuestiones sociales. Es de resaltar que en la educación, hay dificultades para la inclusión de la persona con deficiencia en la enseñanza pública regular, así como la carencia en la capacitación de los profesionales de las áreas de educación y salud para tratar a estas personas; se evidencia también, que la legislación laboral dirigida hacia las personas con deficiencia, aún necesita de algunas reglamentaciones. Conclusiones: La creación de legislaciones y sus respectivas reglamentaciones no son suficientes para la efectiva inclusión social de las personas con deficiencia, siendo necesarias acciones intersectoriales, conforme rezan los principios del Sistema Único de Salud de Brazil, para una concientización social acerca de las potencialidades de éstas personas, proporcionando condiciones humanas y materiales que les permitan vivir como ciudadanos.

Objective: This study aimed at analyzing literature about the policy of social inclusion of handicapped people after the National Policy for integration of handicapped people was created in Brazil. Methodology: Systematic review of the regular Brazilian scientific production in the databases of the Scientific Electronic Library Online - SciELO. For the purpose of choosing the articles, a combination of the following descriptors was used: public policies, social inclusion, deficient, handicapped people and work. Articles published in national magazines between 2000 and 2009 in the areas of Health and Human Science areas were included. Results: A total of 253 articles were obtained. From these articles, 17 were chosen. For the analysis, results were divided in subgroups according to the following theme categories: Health and inclusion, education and inclusion, and work and inclusion. Discussion: It was evidenced that health measures are oriented to welfarism without considering the social issues in depth. It is worth highlighting that in education there are difficulties for inclusion of handicapped people in regular public education, as well as deficiencies in the training of education and health professionals to treat these people. Likewise, it was also observed that labor legislation oriented to handicapped people still needs some regulations. Conclusions: Enactment of laws and their corresponding regulations are not enough for the effective social inclusion of handicapped people, since inter-branch actions are necessary, as enshrined in the principles of the Brazilian Unique Health System for social awareness about the potential of these people ensuring them human and material conditions for they are able to live as citizens.

Violência sexual contra mulheres portadoras de necessidades especiais: perfil da vítima e do agressor / Sexual violence against women with special needs: profiles of victims and aggressors / Violencia sexual contra mujeres portadoras de necesidades especiales: perfil de la víctima y del agresor

Estudo transversal e descritivo caracterizou 19 vítimas de violência sexual portadores de necessidades especiais e agressores entre 396 casos registrados no período de 2004 e 2009 em Campina Grande - Paraíba. Os dados foram coletados por pesquisadores treinados, registrados em instrumento estruturado elaborado para o estudo e testado previamente; organizados e analisados com auxílio do software Statistical Package for the Social Sciences 17.0 e estatística descritiva. Verificou-se que 4,8% dos casos registrados envolveram mulheres portadoras de necessidades especiais. As vítimas, na maioria com deficiência intelectual, eram solteiras, com idade entre 12 e 19 anos e baixa escolaridade. O agressor era em sua maioria único e conhecido da vítima; constatou-se o emprego de constrangimento em 21,1% dos casos, sendo a força física e a grave ameaça as mais frequentes. As equipes de saúde podem contribuir para a prevenção e detecção da violência sexual, com atenção a portadores de necessidades especiais...

This transversal and descriptive study describes 19 special needs victims of sexual violence and aggressors from 396 cases of sexual violence registered in the period 2004 to 2009 in Campina Grande in the state of Paraíba. The data was collected by trained researchers and recorded on a structured research instrument developed for the study and previously tested. Data was organized and analyzed with the help of the software Statistical package for the Social Sciences 17.0 and descriptive statistics. It was ascertained that 4.8% of the cases of sexual violence involved women with special needs. The victims, the majority of whom had mental disabilities, were single, aged between 12 and 19, and with little schooling. The majority of the aggressors were known to the victim and acted alone; it was established that violence was used in 21.1% of cases, with physical violence and serious threats being most common. Health teams can contribute to the prevention and detection of sexual violence, with particular regard to people with special needs...

Estudio transversal y descriptivo que caracterizó 19 víctimas de violencia sexual portadores de necesidades especiales y agresores entre 396 casos registrados en el periodo de 2004 y 2009 en Campina Grande - Paraíba. Los datos fueron recogidos por investigadores profesionales, registrados en instrumento estructurado elaborado para el estudio y evaluados previamente; organizados y analizados con el auxilio del software Statistical Package for the Social Sciences 17.0 y estadística descriptiva. Se verificó que 4,8% de los casos involucran mujeres portadoras de necesidades especiales. Las víctimas, en la mayoría con deficiencia intelectual, eran solteras, con edad entre 12 y 19 años y poca escolaridad. El agresor era en su mayoría único y conocido de la víctima; se ha constatado el empleo de violencia en 21,1% de los casos, siendo la fuerza física y la grave amenaza las más frecuentes. Los equipos de salud pueden contribuir para la prevención y detección de la violencia sexual, con atención a portadores de necesidades especiales...

Sexualidade e deficiência intelectual: narrativas de pais de adolescentes / Sexuality and intellectual handicap: parents' narratives

Pelo senso comum, adolescentes com deficiência intelectual têm a sexualidade exacerbada ou são assexuados. Para conhecer como vivenciam as manifestações sexuais de seus filhos, entrevistamos 14 pais de adolescentes com essa deficiência. A análise das narrativas obtidas foi baseada em autores da antropologia. Nelas, observaram-se os preconceitos e o desconhecimento sobre o tema, bem como a reprodução da ideologia de gênero da nossa sociedade. Nas narrativas dos pais de adolescentes do sexo masculino, a masturbação, a relação sexual e o medo de abuso sexual foram destaques, enquanto nas dos pais das adolescentes privilegiaram-se como tema as mudanças corporais e também o receio de que fossem abusadas sexualmente. A inadequação entre desenvolvimento físico e um comportamento sexual considerado socialmente impróprio também foi alvo de narrativas. Aponta-se a necessidade de ampliação do debate com os adolescentes, seus pais e diversos setores da sociedade para minimizar os preconceitos em relação à sexualidade das pessoas com deficiência intelectual, propiciando a garantia de seus direitos sexuais.

By common sense, adolescents with intellectual disabilities have a heightened sexuality or are asexual. To learn how they experience the sexual manifestations of their children, we interviewed 14 parents of adolescents with this deficiency. The analysis of the narratives obtained was based on authors of anthropology. In them, there were prejudices and ignorance on the subject, as well as playing the gender ideology of our society. In the narratives of parents of adolescent males, masturbation, sex and fear of sexual abuse were highlighted, while parents privileged themes such as bodily changes and also the fear that they were sexually abused. The mismatch between physical development and sexual behavior considered socially improper was also the target of narratives. The paper points up the need to expand the discussion with teens, their parents and various sectors of society to minimize biases regarding sexuality of people with intellectual disabilities, providing a guarantee of their sexual rights.