Partial GMP contribution to total protein substitute intake did not affect nutritional status in patients with PKU. Blood PHE control was not adversely affected. The increased blood TYR after GMP introduction necessitates further study.
RESUMO:A condição crônica tem sido um tema de relevância para a reflexão do processo de viver humano. O artigo apresenta a síntese de uma pesquisa cujo objetivo foi compreender o cuidado às crianças com Síndrome Nefrótica, identificando novos elementos contextuais e horizontes para reconstruir o cuidado de enfermagem, tendo como foco a família. Trata-se de um estudo qualitativo apoiado na hermenêutica, fundamentada em Gadamer e Ricouer, realizado em 2004, com famílias de crianças do Ambulatório de Nefrologia Pediátrica do Hospital Universitário Júlio Müller, em Cuiabá, totalizando 42 pessoas. Na discussão são apresentados: síntese das famílias, na qual elas são mostradas por meio das suas biografias, projetos, personagens e contexto; a trajetória da doença da criança na família e o cuidado da criança com Síndrome Nefrótica, no qual revelam-se os horizontes dos cuidadores, familiares e profissionais de saúde, e o cuidado possível a partir dos arranjos da família e limites da equipe. Conclui-se que o diálogo é a primeira condição para a compreensão e para o cuidado.ABSTRACT: Chronic conditions have been extremely relevant issues to consider when reflecting about the human living process. The purpose of this study was to understand how to care for children with Nephrotic Syndrome in nursing practice, focusing on the family. The families' narratives were interpreted in this qualitative study based on the hermeneutic approach of Gadamer and Ricouer. The participants of this study were the families of children and adolescents with Nephrotic Syndrome who in 2004 attended the Pediatric Nephrology Service at the Júlio Müller University Hospital, in Cuiabá, Brazil. The discussions were grouped into three categories: Synthesis of the families, presented by means of their biographies, projects, personalities, and contexts; The trajectory of the child's condition in the family; and the Care for the nephrotic child. These aspects reveal the points of view of the caregivers, family members and health professionals, as well as the care possibilities in view of the family arrangements and team limitations. Our conclusion is that dialogue is the first condition to understanding and to offering care. RESUMEN:La condición crónica ha sido un tema de importancia extrema para la reflexión del proceso de vivir humano. En el artículo se presenta la síntesis de una investigación realizada con la finalidad de comprender cómo los niños con Síndrome Nefrótico son cuidados, buscando identificar nuevos elementos y horizontes para reconstruir el cuidado de enfermería, teniendo como foco la familia. Para la presente investigación, se realizó un estudio cualitativo que utilizó como referente teórico metodológico, la hermenéutica basada en Gadamer y Ricouer. De la investigación realizada en 2004, participaron 42 personas pertenecientes a las familias de niños y adolescentes con Síndrome Nefrótico, usuarias del Servicio de Nefrología Pediátrica del Hospital Universitario Júlio Müller, en Cuiabá, Brasil. En la discusión son presentadas: una síntesis...
Blood phenylalanine (Phe) is used as the primary marker to evaluate metabolic control. Our study aimed to describe the metabolic control of patients with phenylketonuria (PKU) comparing three different treatment recommendations (European guidelines/US guidelines/Portuguese consensus). This was a retrospective, observational, single centre study in patients with PKU collecting data on blood Phe levels from 2017. Nutritional intake data and sapropterin (BH4) prescription were collected at the last appointment of 2017. The final sample studied included 87 patients (48% females) [13 hyperphenylalaninemia; 47 mild PKU; 27 classical PKU] with a median age of 18 y (range: 1–36 y). The median number of blood Phe measurements for patients was 21 (range: 6–89). In patients aged < 12 y, the median blood Phe level was 300 μmol/L (range 168–480) and 474 μmol/L (range 156–1194) for patients ≥ 12 y. Overall, a median of 83% of blood Phe levels were within the European PKU guidelines target range. In patients aged ≥ 12 years, there was a higher median % of blood Phe levels within the European PKU guidelines target range (≥12 y: 84% vs. <12 y: 56%). In children < 12 y with classical PKU (n = 2), only 34% of blood Phe levels were within target range for all 3 guidelines and 49% with mild PKU (n = 11). Girls had better control than boys (89% vs. 66% median Phe levels within European Guidelines). Although it is clear that 50% or more patients were unable to achieve acceptable metabolic control on current treatment options, a globally agreed upper Phe target associated with optimal outcomes for age groups is necessary. More studies need to examine how clinics with dissimilar resources, different therapeutic Phe targets and frequency of monitoring relate to metabolic control.
Resumo Objetivou-se compreender o trabalho de limpeza hospitalar da perspectiva dos trabalhadores e descrever, na visão deles, as repercussões da ambiência hospitalar sobre o seu cotidiano de vida e trabalho. É um estudo de caso de abordagem qualitativa, empregando a hermenêutica como apoio teórico-metodoló-gico. Os dados foram colhidos por meio da observação não participante e de entrevista com cinco trabalhadoras da limpeza de um hospital universitário. A aná-lise foi por meio de leituras, buscando-se as unidades de significados contidas na transcrição dos dados empíricos, que permitiu o desmembramento em duas categorias: o cotidiano do trabalho de limpeza hospitalar e os reflexos da terceirização na vida do trabalhador da limpeza hospitalar. No hospital estudado, predominou o trabalho feminino e a constante preocupação com os riscos à saúde, principalmente os riscos biológicos. A terceirização reflete-se diretamente sobre o trabalhador, causando-lhe a sensação de um menor valor social e humano. Aponta-se a necessidade dos hospitais oferecerem um ambiente mais acolhedor ao trabalhador terceirizado da limpeza, tão exigidos física e mentalmente. Palavras-chave serviços de limpeza; serviços terceirizados; ambiente de instituições de saúde.Abstract This study aimed to understand the hospital cleaning work from the workers' perspective and to describe, from their viewpoint, the impact the hospital environment has on their daily life and work. It is a qualitative case study that uses hermeneutics as its theoretical and methodological support. Data were collected through non-participant observation and interviews were carried out with five cleaning workers at a university hospital. The analysis was based on reading, seeking for the units of meaning contained in the transcript of the empirical data, which allowed for distribution into two categories: Daily hospital cleaning work and reflections on the outsourcing of the hospital cleaning workers' lives. At the hospital that was studied, female labor and the constant concern with health risks, especially biohazards, predominated. Outsourcing has a direct impact on the workers, as it makes them feel less valuable from the social and human viewpoints. The study points to the need for hospitals to offer a more welcoming environment for outsourced cleaning workers, upon whom so much physical and mental demand is imposed.
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