Geisa dos Santos Luz

Neonatal Screening Program coverage in Maringá (PR), 2001 to 2006

Objective: To evaluate the National Newborn Screening Program (NNSP) coverage in the city of Maringa, from 2001 to 2006. Methods: This is a cross-sectional research design, which verified the number of live newborns as well as the number of screened children. The study considered the children born in Maringa as well as those born in other cities but living in Maringa. Results: The NNSP did not reach the expected coverage of 100% in Maringa during the first five years of evaluation. There is a need to consider certain particularities when performing data analysis, such as the period and the place of material collection. Conclusion: Changes should be made so as to improve NNSP coverage. Furthermore, the period when the blood sample was drawn should be reconsidered and decentralized with a view to improve health care delivery.

Doenças raras: itinerário diagnóstico e terapêutico das famílias de pessoas afetadas

Objetivo Caracterizar o itinerario diagnostico e terapeutico realizado pelas familias de pessoas com doencas raras, no âmbito da rede de servicos publicos brasileiros. Metodos Trata-se de pesquisa qualitativa. Utilizou-se a teoria bioecologica do desenvolvimento humano, de Urie Bronfenbrenner, para a compreensao dos dados. O instrumento de pesquisa foi uma entrevista semiestruturada, e os dados foram analisados pelo metodo de analise de conteudo. Resultados Foram agrupados tres nucleos tematicos: “Itinerario das familias em busca do diagnostico da doenca”; “Itinerario das familias no pos-diagnostico da doenca”; “Itinerario de manutencao terapeutica”. Conclusao O acesso aos servicos especializado possibilitou a obtencao do diagnostico da doenca rara. O tratamento foi um desafio, pois ha poucos medicamentos disponiveis na escolha terapeutica para essas doencas. A judicializacao foi fundamental para o acesso e a manutencao terapeutica.

Trabalho familiar: distribuição desejada do trabalho doméstico e cuidados dos filhos entre cônjuges

This study investigates the desired distribution of family labor between spouses who have jobs and children of 6 years or less. This is a quantitative study developed with the participation of 92 couples living in the city of Rio Grande, state of Rio Grande do Sul Brazil. The desired distribution of housework and children care is predominantly an equal one, though the woman was seen as more responsible for the care of children. Management/repairing were subitems of the housework analysis, and were considered to be activities that should be mostly done by men. Knowing the changes of contemporary families will allow nursing to be less exclusionary and more flexible in its family nursing actions.

La violencia contra la mujer en el ámbito familiar: estudio teórico sobre la cuestión de género

This is a theoretical study that aims to discuss the gender issues involved in violence against women within the family. The discussion is grounded in authors who address the issue of violence against women and its relation to gender issues, supported by Joan Scott and reflecting on the work of a nurse in relation to the care of women in situations of violence. The issues examined in this essay may help to reflect on the practice of professionals searching to confront violence in order to prevent the cycle being reproduced within the family

O significado de uma organização de apoio aos portadores e familiares de fibrose cística na perspectiva das famílias

El presente estudio tiene como objetivo comprender el significado de una organizacion de apoyo a las familias de pacientes con fibrosis quistica. Se utilizo como referencia el metodo cualitativo y fenomenologico. Se hicieron entrevistas a 14 familias que viven en las regiones Norte y Noroeste del Estado de Parana, Brasil, registradas en la Associacao Paranaense de Assistencia a Mucoviscidose. Los resultados se agruparon en tres categorias: a) Sentir apoyo en el ambiente de la fibrosis quistica; b) Compartir la vida: los cuidados esenciales a las familias que tienen pacientes con fibrosis quistica; c) Solidaridad, equidad y empowerment: un tripode de la organizacion social en la fibrosis quistica. Se concluye que compartir la experiencia de las familias es crucial para el enfrentamiento de la enfermedad y que la asociacion de pacientes es fundamental para que ellos acepten la enfermedad con tranquilidad teniendo una buena expectativa de calidad en sus vidas.

Ensino de teorias de enfermagem em Cursos de Graduação em Enfermagem do Estado do Paraná - Brasil

Objectives: To identify how education on nursing theory is addressed in undergraduate nursing courses in schools of higher education in the state of Parana. Methods: A survey was conducted using a sample of the 35 coordinators of the nursing course of higher education institutions of the State of Parana, Brazil. Results: 35 courses were identified that focused on nursing theory. The students are introduced to nursing theory early in the curriculum, usually at the beginning of the nursing program. Wanda Horta’s theory was mentioned as the theory on which many courses were based (60%). Conclusion: The teaching of nursing theory is conducted in a fragmented manner, which may

THE MEANING OF A CYSTIC FIBROSIS SUPPORT ORGANIZATION FROM THE FAMILY PERSPECTIVE

El presente estudio tiene como objetivo comprender el significado de una organizacion de apoyo a las familias de pacientes con fibrosis quistica. Se utilizo como referencia el metodo cualitativo y fenomenologico. Se hicieron entrevistas a 14 familias que viven en las regiones Norte y Noroeste del Estado de Parana, Brasil, registradas en la Associacao Paranaense de Assistencia a Mucoviscidose. Los resultados se agruparon en tres categorias: a) Sentir apoyo en el ambiente de la fibrosis quistica; b) Compartir la vida: los cuidados esenciales a las familias que tienen pacientes con fibrosis quistica; c) Solidaridad, equidad y empowerment: un tripode de la organizacion social en la fibrosis quistica. Se concluye que compartir la experiencia de las familias es crucial para el enfrentamiento de la enfermedad y que la asociacion de pacientes es fundamental para que ellos acepten la enfermedad con tranquilidad teniendo una buena expectativa de calidad en sus vidas.

A intersubjetividade no contexto da família de pessoas com fibrose cística

Se trata de una investigacion cualitativa, con aproximacion fenomenologica, que objetivo desvelar los procesos intersubjetivos en el contexto de la familia de personas con Fibrosis Quistica (FQ). Se desarrollo entrevista con 14 familias con portadores de FQ, catastrados en la Asociacion Paranaense de Asistencia a la Mucoviscidose (AAMPR), residentes en las regiones Norte y Noroeste del Estado de Parana (PR), Brasil. De las sus hablas fueran aprendidas unidades de significado y agrupadas en tres categorias: Familia, portador de FQ y el otro; Aspectos religiosos en la vivencia de la FQ en la familia; Portador de FQ en la vida escolar, afectiva y profesional. Los resultados evidenciaran que la experiencia de las familias compartida con el otro fue crucial para el enfrentamiento de la enfermedad. El conocimiento de los procesos intersubjetivos que subyacen en el nucleo de la familia de las personas afectadas por el FQ proporciona una nueva forma de trabajar en la enfermeria.

PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS

As doencas raras provocam forte impacto nas familias, gerando necessidades que ultrapassam aquelas associadas as doencas mais frequentes. A incorporacao de novas responsabilidades e a relacao com servicos sociais e de saude sao algumas dessas. Este estudo objetiva identificar as necessidades prioritarias das familias de pessoas com doencas raras, percebidas a partir do diagnostico. Trata-se de um estudo qualitativo desenvolvido com 16 familiares de pessoas com doencas raras, residentes no Rio Grande do Sul, cujos dados foram coletados entre novembro/2012 e marco/2013, por meio de entrevista semiestruturada e submetidos a analise de conteudo, balizada pela teoria bioecologica do desenvolvimento humano. Os resultados apontam como prioritarias as necessidades de: acesso aos servicos sociais e de saude; conhecimento sobre doenca rara; estruturas de apoio social; aceitacao e insercao social; preservacao da vida pessoal e familiar. Conclui-se que (re)organizar os servicos e conhecer as especificidades das necessidades sao pre-condicoes para qualificar a assistencia de enfermagem e amenizar o impacto que a doenca rara provoca na familia.Rare diseases cause strong impact in families and generate needs beyond those associated with the most frequent diseases. Some of these needs are the inclusion of new responsibilities and the relationship with the healthcare and social services. This study is aimed at identifying the priority needs of families of rare disease patients as perceived from the time of diagnosis. This is a qualitative study conducted with 16 relatives of rare disease patients who live in the state of Rio Grande do Sul. Data were collected from November 2012 to March 2013, through semi-structured interviews and submitted to content analysis, based on the bioecological system of human development. The results indicated the following priority needs: access to social and healthcare services; knowledge about rare diseases; social support structures; acceptance and social integration; preservation of personal and family life. It was concluded that (re)organizing services and meeting the specific needs are preconditions to qualify nursing care and soften the impact the rare disease has on the family.

[Family labor: desired distribution of housework and childcare between spouses].

This study investigates the desired distribution of family labor between spouses who have jobs and children of 6 years or less. This is a quantitative study developed with the participation of 92 couples living in the city of Rio Grande, state of Rio Grande do Sul Brazil. The desired distribution of housework and children care is predominantly an equal one, though the woman was seen as more responsible for the care of children. Management/repairing were subitems of the housework analysis, and were considered to be activities that should be mostly done by men. Knowing the changes of contemporary families will allow nursing to be less exclusionary and more flexible in its family nursing actions.