Urological outcomes in children with congenital Zika syndrome: The experience of a cohort in Campina Grande, Brazil.

OBJECTIVE: To describe the urological outcomes in children with congenital Zika syndrome (CZS) and investigate the relationship between clinical and urological findings in this population. METHODS: This cross-sectional study involved children with CZS followed up by a referral centre for children with microcephaly in the state of Paraiba in northeast Brazil. The urological evaluation included clinical history, urine culture results, ultrasonography of the urinary tract, and urodynamic evaluation, following the protocol proposed by Costa Monteiro et al. (2017). Descriptive statistical analysis was performed in addition to association and correlation tests, considering clinical and urodynamic variables. RESULTS: Among the 88 children with CZS (35.5 ± 5.5 months), 97.7% had microcephaly, and 51% presented urinary tract infection (UTI) confirmed with clinical history and lab tests. The number of confirmed UTI episodes varied from one to 14 per child. The urodynamic evaluation confirmed the presence of an overactive bladder in 78 children and incomplete voiding in 50. Urodynamic findings were associated with the number of confirmed UTI episodes, child's sex, and actual weight, in addition to the use of anticonvulsant and myorelaxant drugs. CONCLUSIONS: UTIs were confirmed in most children. Other urological outcomes observed were overactive bladder and low bladder capacity, which were associated with the number of confirmed UTI episodes, use of anticonvulsants and myorelaxants, and the child's sex and weight. These are treatable conditions, and it is paramount that paediatricians, neonatologists, and infectious disease specialists are aware of them to make clinical decisions and help reduce the risk of renal damage and other morbidities.

[The quality of life of Brazilian and North-American adolescents with spina bifida]. / A qualidade de vida de jovens portadores de espinha bífida brasileiros e norte-americanos.

The purpose of the present research is to explore and describe the quality of life of adolescents in two different cultural environments, the Brazilian and the North American. The point of reference of the investigation is the dimension encompassing the concept of quality of life. This qualitative research utilized semi-structured interviews and focal groups in two health-care units specialized in the care of youths with spina bifida, one in Brazil and another in the USA. The discourses reflected the need for more comprehensive categories of quality of life, not pulverizing the life experience. The results reveal inequality in the interactions between the healthy and the disabled and show that the stigma permeates all dimensions of the life of these individuals, interfering in their social inclusion, as well as in their subjective construction and self-esteem. Two fields of reference were identified for the concept of quality of life: (1) the micro-political that refers to social values, beliefs and expectations that are created through face to face encounters; and (2) the macro-political referring to the public universe, democracy and human rights.

A qualidade de vida de jovens portadores de espinha bífida brasileiros e norte-americanos / The quality of life of Brazilian and North-american adolescents with spina bifida

A pesquisa tem como objetivo explorar a qualidade da vida de jovens portadores de espinha bífida em duas culturas, brasileira e norte-americana, norteada pelo conceito de qualidade de vida. O estudo, de caráter qualitativo, utilizou entrevistas semi-estruturadas e grupos focais em duas unidades de saúde especializadas no tratamento de jovens com espinha bífida, uma no Brasil e a segunda nos Estados Unidos. Os discursos dos jovens em questão refletem a necessidade de categorias mais englobantes que não remetam a uma pulverização da experiência de vida. Os resultados tornam evidente uma estrutura de desigualdade nas interações mistas e demonstram que o estigma se encontra presente em todas as dimensões da vida dos sujeitos, interferindo na inserção social, construção subjetiva, e auto-estima do jovem. Foram identificados dois campos de referência para a noção de qualidade de vida: (1) o micropolítico, que se refere aos valores, visões, crenças e expectativas sociais construídos a partir dos encontros face a face; e (2) o macropolítico, que diz respeito ao espaço público, ao âmbito da democracia dos direitos humanos.

The purpose of the present research is to explore and describe the quality of life of adolescents in two different cultural environments, the Brazilian and the North American. The point of reference of the investigation is the dimension encompassing the concept of quality of life. This qualitative research utilized semi-structured interviews and focal groups in two health-care units specialized in the care of youths with spina bifida, one in Brazil and another in the USA. The discourses reflected the need for more comprehensive categories of quality of life, not pulverizing the life experience. The results reveal inequality in the interactions between the healthy and the disabled and show that the stigma permeates all dimensions of the life of these individuals, interfering in their social inclusion, as well as in their subjective construction and self-esteem. Two fields of reference were identified for the concept of quality of life: (1) the micro-political that refers to social values, beliefs and expectations that are created through face to face encounters; and (2) the macro-political referring to the public universe, democracy and human rights.

[Disabled adolescents: sexuality and stigma]. / Jovens portadores de deficiência: sexualidade e estigma.

This paper is designed to extend discussions of disability and sexuality, highlighting the expectations, beliefs, desires and experiences of young people with physical disability and presenting the partial findings of the doctoral research project entitled "You laugh because I am different, I laugh because you are all the same: dimensions of the quality of life in adolescents with spina bifida", which discusses the quality of life in two cultures: Brazilian and American. The perception and interest of the participants, and their need to discuss problems related to their sexuality and its implications for their families, friends and healthcare services spurred investigations of this topic in greater depth, indicating the need to address concepts of sexuality on broader bases. The discourse of these youngsters stresses four aspects related to the experience of sexuality: (1) Sexuality and care; (2) Sexuality, body image and discredited characteristics; (3) Sexuality of people with special needs from the standpoint of violence, and finally; (4) Sexuality and questions about medical information.

[Accessibility of legal benefits available in Rio de Janeiro for physically handicapped people]. / Acessibilidade a benefícios legais disponíveis no Rio de Janeiro para portadores de deficiência física.

According to PAHO, only 2 % of Latin America's 85 million disabled people receive adequate medical care. Ten percent of the world's population lives with disabilities without having access to their constitutional rights. Disability must be addressed on several levels: medical, rehabilitative, social and political. Disability is strongly linked to poverty. Stigma, discrimination and inability to pay limit access to health services and education and ill-health increases the treatment cost, creating a vicious circle that must be broken. Although the Constitution grants rights to disabled persons including access to health and education, these legal benefits are not always obtained or respected. To better understand and address the problem, the process for obtaining three of these legal benefits was studied among disabled pediatric patients with myelomeningocele in a specialized Institute in Rio de Janeiro. Results show a low achievement rate. Bureaucracy and the expenses with locomotion were main constrains worsened by lack of time and resources in families struggling with poverty. Other difficulties were lack of professional attention and confidence in the system, problems related to documents, unqualified educational system and locomotion constrains.

Acessibilidade a benefícios legais disponíveis no Rio de Janeiro para portadores de deficiência física / Accessibility of legal benefits available in Rio de Janeiro for physically handicapped people

Segundo a OPAS, só 2 por cento dos 85 milhões de pessoas com deficiência têm assistência adequada na América Latina e 10 por cento da população mundial vivem com deficiência, mas sem acesso a direitos constitucionalmente adquiridos. A deficiência precisa ser abordada em diferentes níveis: clínico, de reabilitação, social e político. Pobreza e deficiência estão fortemente relacionadas. Estigma, discriminação e incapacidade física e financeira limitam o acesso à educação e saúde, levando à cronificação e agravamento da morbidade, aumentando os custos do tratamento, formando-se um ciclo vicioso que tem que ser quebrado. Embora a Constituição Federal inclua direitos a pacientes deficientes, dando acesso à saúde e educação, eles não são obtidos e respeitados. Para compreender o problema, estudou-se o processo de obtenção de três destes benefícios em pacientes com deficiência física portadores de mielomeningocele em instituto de referência no Rio de Janeiro. Os resultados mostram um baixo índice de obtenção. A burocracia e o custo das múltiplas viagens foram as principais dificuldades para famílias próximas ou abaixo da linha de pobreza e filhos com problemas de locomoção e doença crônica. Outras dificuldades foram desinteresse profissional, descrédito, sistema educacional despreparado e dificuldades de acesso.

According to PAHO, only 2 percent of Latin America's 85 million disabled people receive adequate medical care. Ten percent of the world's population lives with disabilities without having access to their constitutional rights. Disability must be addressed on several levels: medical, rehabilitative, social and political. Disability is strongly linked to poverty. Stigma, discrimination and inability to pay limit access to health services and education and ill-health increases the treatment cost, creating a vicious circle that must be broken. Although the Constitution grants rights to disabled persons including access to health and education, these legal benefits are not always obtained or respected. To better understand and address the problem, the process for obtaining three of these legal benefits was studied among disabled pediatric patients with myelomeningocele in a specialized Institute in Rio de Janeiro. Results show a low achievement rate. Bureaucracy and the expenses with locomotion were main constrains worsened by lack of time and resources in families struggling with poverty. Other difficulties were lack of professional attention and confidence in the system, problems related to documents, unqualified educational system and locomotion constrains.

Jovens portadores de deficiência: sexualidade e estigma / Disabled adolescents: sexuality and stigma

O presente artigo pretende ampliar a discussão sobre deficiência e sexualidade valorizando as expectativas, crenças, desejos e experiências de jovens com deficiência física. Refere-se a um recorte parcial dos dados da pesquisa de doutorado "Vocês riem porque eu sou diferente, eu rio porque vocês são todos iguais: as dimensões da qualidade de vida em jovens portadores de espinha bífida", que objetivou discutir a qualidade da vida de jovens portadores de espinha bífida em duas culturas: brasileira e norte-americana. A percepção, interesse e problematização dos participantes em relação à sua sexualidade e seus desdobramentos na sua família, serviço de saúde e círculo de amizades motivaram um maior aprofundamento da temática e apontaram para a necessidade de abordar o conceito sexualidade de maneira englobante. Os discursos dos jovens priorizam quatro aspectos relacionados à vivência da sexualidade: (1) sexualidade e cuidado; (2) sexualidade, imagem corporal e as características desacreditáveis; (3) a sexualidade do portador de deficiência física através do olhar da violência, e finalmente; (4) a sexualidade e interrogação das informações médicas.

This paper is designed to extend discussions of disability and sexuality, highlighting the expectations, beliefs, desires and experiences of young people with physical disability and presenting the partial findings of the doctoral research project entitled "You laugh because I am different, I laugh because you are all the same: dimensions of the quality of life in adolescents with spina bifida", which discusses the quality of life in two cultures: Brazilian and American. The perception and interest of the participants, and their need to discuss problems related to their sexuality and its implications for their families, friends and healthcare services spurred investigations of this topic in greater depth, indicating the need to address concepts of sexuality on broader bases. The discourse of these youngsters stresses four aspects related to the experience of sexuality: (1) Sexuality and care; (2) Sexuality, body image and discredited characteristics; (3) Sexuality of people with special needs from the standpoint of violence, and finally; (4) Sexuality and questions about medical information.

A qualidade de vida de jovens portadores de espinha bífida do Children's National Medical Center – Washington DC / The quality of life of adolescents with spina bifida at the Children's National Medical Center - Washington DC

O presente artigo tem como objetivo explorar a qualidade de vida de jovens portadores de espinha bífida atendidos no Children's National Medical Center em Washington DC. A pesquisa baseia-se em uma perspectiva qualitativa que utiliza como referencial teórico central a "Teoria do estigma" e as discussões conceituais sobre as dimensões de qualidade de vida. Foram entrevistados 15 jovens do serviço acima citado, sendo que 8 deles participaram de um grupo focal construído através das questões levantadas durante entrevistas. Os discursos dos jovens em questão refletem a necessidade de categorias mais englobantes que não remetam a uma pulverização da experiência de vida. Evidenciou-se uma estrutura de desigualdade nas interações entre saudáveis e deficientes, e reproduzida pelos próprios jovens. Os resultados demonstram que o estigma se encontra presente em todas as dimensões da vida dos sujeitos, interferindo na inserção social, construção subjetiva do jovem e sua auto-estima, reforçando o papel do portador de deficiência como uma "não-pessoa". Embora a categoria sexualidade não seja priorizada em outros instrumentos para esta população, o tema se faz presente e central na discussão da experiência da vida dos mesmos.

The present article explores the quality of life of adolescents with spina bifida at the Children's National Medical Center in Washington DC. The research is based on a qualitative perspective that utilizes the "Theory of stigma" as the central theoretical framework, in addition to the discussions of the concept of quality of life and its dimensions. Fifteen adolescents were interviewed at the above institution, eight of which then participated in a focal group structured through issues that emerged during this previous phase. The discourses reflected the need for more encompassing categories for quality of life that do not pulverize the life experience. The adolescent's discourses demonstrate an inequality structure in interactions between the healthy and the disabled. The results demonstrated that stigma permeates all life dimensions of these subjects, interfering in their social inclusion, as well as in their subjective construction and self-esteem, asserting the role of the disabled as a "non-person". Finaly, we found that even though sexuality was not prioritized in other instruments that contemplate this population, the theme emerges as central to the discussion of their life experiences.

A enurese em criancas e seus significados para suas famílias: abordagem qualitativa sobre uma intervencão profissional em saúde / Child enuresis and parental meanings: a qualitative perspective for healthcare professionals

OBJETIVOS: discutir as percepcões e significados atribuídos pelas famílias acerca da enurese vivida por seus filhos, através de uma perspectiva socio-antropológica que problematiza as mesmas no contexto das questões identificadas no interior do campo dos modelos explicativos da doenca. MÉTODOS: relato de experiência, baseado em entrevistas semi-estruturadas, realizadas junto a 24 (vinte e quatro) familiares/cuidadores de criancas com quadros de enurese. RESULTADOS: as famílias de pacientes com enurese demonstram a necessidade de definir a doenca de maneira subjetiva, entendendo-a através dos sentimentos que a mesma desencadeia, das mudancas comportamentais e das diferencas encontradas no relacionamento com as outras pessoas devido à mesma. Observa-se que os significados da enurese se organizam em dois campos que se cruzam: a responsabilizacão da própria crianca por sua enurese e os fatores externos, como o ambiente familiar e a situacão econômica e social. CONCLUSÕES: recomenda-se que profissionais de saúde estejam atentos aos perigos da normatividade biomédica de seu discurso, já que o mesmo dificulta a compreensão e elaboracão dos tratamentos necessários. Profissionais de saúde devem estar informados sobre o risco de maustratos relacionados à enurese, o que justifica a discussão acerca de possíveis estratégias de enfretamento dessa realidade na acão profissional junto a essa clientela.