Consensus Statement on Standard of Care for Congenital Myopathies

Recent progress in scientific research has facilitated accurate genetic and neuropathological diagnosis of congenital myopathies. However, given their relatively low incidence, congenital myopathies remain unfamiliar to the majority of care providers, and the levels of patient care are extremely variable. This consensus statement aims to provide care guidelines for congenital myopathies. The International Standard of Care Committee for Congenital Myopathies worked through frequent e-mail correspondences, periodic conference calls, 2 rounds of online surveys, and a 3-day workshop to achieve a consensus for diagnostic and clinical care recommendations. The committee includes 59 members from 10 medical disciplines. They are organized into 5 working groups: genetics/diagnosis, neurology, pulmonology, gastroenterology/nutrition/speech/oral care, and orthopedics/rehabilitation. In each care area the authors summarize the committee's recommendations for symptom assessments and therapeutic interventions. It is the committee's goal that through these recommendations, patients with congenital myopathies will receive optimal care and improve their disease outcome.

LEISURE AND MENTAL HEALTH IN PEOPLE WITH HYPERTENSION: CONVERGENCE IN HEALTH EDUCATION

People with hypertension constantly deal with issues related to mental health due to the psychosocial determinants of this illness, and leisure is an important control strategy. The objective of this study was to promote health education to a group of hypertensive patients, through research-action, based on critical-social pedagogy, and taking into consideration the participants' perception of leisure. Educational activities were conducted and, following, an evaluation was performed regarding the subjects' opinion about the impact of leisure on their lives and mental health. The group perceived leisure as a coping strategy for loneliness and also as a late development of independence; it was also regarded as a means of socialization and as a promotion of mental health. These perceptions revealed two themes: aging, leisure, and chronic disease; and knowledge and leisure experiences. Educational actions, such as group dynamics and discussions, were planned considering these themes with the purpose of providing the necessary conditions for socializing and exchanging experiences.

THE ACHIEVEMENT OF EXCELLENCE IN BRAZILIAN PROGRAMS OF POST-GRADUATION STRICTO SENSU WITH A DOCTORATE IN NURSING

This study aimed to identify how the graduate programs in nursing stricto sensu evaluated by the Nursing field at Coordination of Improvement of Higher Education Personnel, in the triennium 2007-2009, achieved excellence - grade 6. Descriptive exploratory study of nature documentary, which examined the data of Reports Indicators of these Programs at the site of the Coordination cited, in 2010. We analyzed 99 chips of 33 programs for the triennium 2007 to 2009, grouped in sub-clauses of Social and item categories for grades 6/7. Presents the indicators of excellence of Americans and Brazilians Programs, the results of the triennial assessment relating to sub-items of item 5 and the description of program performance specified for the grade 6. It follows that the excellence of Programs has been gradually achieved, with performance in certain categories as those required by international standards, overcoming the obstacles to the achievement of excellence in all its fullness.

The production of critical-reflexive narratives and their effect on nursing students' portfolios

The objective of this study is to analyze the process of producing reflexive narratives on nursing students' portfolios. This qualitative study performed an analysis of the portfolios of the class discipline Health Promotion in Primary Education, taught in the fourth semester of the Nursing Licensure Course. Results showed an initial predominance of descriptive records, with the incipient approach of theoretical aspects associated with the aspects regarding their experience. Further, in the group and experience discussions, there were narratives containing more critical and reflexive elements, with justifications for the described actions and the relationships with the theoretical-practical aspects studied in the class and in the course. In conclusion, there is a process of producing critical-reflexive narratives in portfolios that could include a summarized description, using common sense and idealization which allows for including the differences and the theoretical review.

Low mechanical ventilation times and reintubation rates associated with a specific weaning protocol in an intensive care unit setting: a retrospective study

OBJECTIVES: A number of complications exist with invasive mechanical ventilation and with the use of and withdrawal from prolonged ventilator support. The use of protocols that enable the systematic identification of patients eligible for an interruption in mechanical ventilation can significantly reduce the number of complications. This study describes the application of a weaning protocol and its results. METHODS: Patients who required invasive mechanical ventilation for more than 24 hours were included and assessed daily to identify individuals who were ready to begin the weaning process. RESULTS: We studied 252 patients with a median mechanical ventilation time of 3.7 days (interquartile range of 1 to 23 days), a rapid shallow breathing index value of 48 (median), a maximum inspiratory pressure of 40 cmH2O, and a maximum expiratory pressure of 40 cm H2O (median). Of these 252 patients, 32 (12.7%) had to be reintubated, which represented weaning failure. Noninvasive ventilation was used postextubation in 170 (73%) patients, and 15% of these patients were reintubated, which also represented weaning failure. The mortality rate of the 252 patients studied was 8.73% (22), and there was no significant difference in the age, gender, mechanical ventilation time, and maximum inspiratory pressure between the survivors and nonsurvivors. CONCLUSIONS: The use of a specific weaning protocol resulted in a lower mechanical ventilation time and an acceptable reintubation rate. This protocol can be used as a comparative index in hospitals to improve the weaning system, its monitoring and the informative reporting of patient outcomes and may represent a future tool and source of quality markers for patient care.

Weight and neuro-psycho-motor development in children discharged from neonatal intensive care unit

Background: Low birth weight affects child growth and development, requiring the intensive use of health services. There are conversely proportional associations between prematurity and academic performance around the world. In this study we evaluated factors involved in weight and neuropsychomotor profile in one and two years old discharged from Intensive Care Units (ICU). Methods/Design: We investigated 203 children from the ICU who were followed for 24 +/- 4 months. The research was conducted by collecting data from medical records of patients in a Follow-up program. We investigated the following variables: inadequate weight at one year old; inadequate weight at two years old and a severe neurological disorder at two years old. Results: We observed increase of almost 20% in the proportion of children which weighted between the 10th and 90th percentiles and decrease of around 40% of children below the 15th percentile, from one to two years old. In almost 60% of the cases neuropsychomotor development was normal at 2 years old, less than 15% of children presented abnormal development. Variables that remained influential for clinical outcome at 1 and 2 years old were related to birth weight and gestational age, except for hypoglycemia. Neurological examination was the most influential variable for severe neurological disturbance. Conclusion: Hypoglycemia was considered a new fact to explain inadequate weight. The results, new in Brazil and difficult in terms of comparison, could be used to identify risk factors and for a better approach of newborn discharged from ICUs.

Spiritual support for people living with HIV/AIDS: A Brazilian explorative, descriptive study

y In this exploratory and descriptive research, we identified the meaning of religion and spirituality in the experience of patients at a public health service for treatment of HIV/AIDS in a Brazilian upcountry town. Eight participants were selected through theoretical sampling. Data were collected through semistructured interviews, and analyzed by means of qualitative content analysis. The emerging themes were religion: a path to support, and God is everything. Religion, as a path that leads patients to different sources of support, included exploration of different churches, acknowledgment of guilt, and finding strength to cope with the disease, rationalization of the disease process, meeting other churchgoers, and finding God and faith. God, an important source of support, was present in prayers, in the belief in healing through faith, and in the feeling of comfort and relief. Because spirituality and religion were seen as important sources of support, in this study we that health professionals include these aspects in care planning.

Food restrictions of patients who are undergoing treatment for oral and oropharyngeal cancer

Purpose: Oral squamous cell carcinoma and its treatment are associated with facial disfigurement and functional inabilities that may lead to malnutrition or under nourishment. This study assessed the incidence of food restrictions in patients undergoing treatment for oral and oropharyngeal cancer. Method: We interviewed 120 patients in two hospitals in Sao Paulo, Brazil, using a structured food frequency questionnaire comprising the most commonly consumed foods in Brazil. This questionnaire was applied twice; the first time to inform dietary patterns prior to the diagnosis of cancer and the second time to assess recent modifications of diet that were associated with the disease and its treatment. Hospital files provided information on clinical status. Multivariate Poisson regression models assessed covariates with prognostic value. Results: One third of patients suffered major food restrictions (i.e., they reduced substantially the intake of more than 50% of the most commonly consumed food items before the diagnosis); 39% suffered a less severe condition (they could not eat less than 50% of the most commonly consumed food items before the diagnosis, and they needed changes in food preparation). Larger tumour size (adjusted incidence ratio IR = 1.45), posterior location (IR = 1.33), radiotherapy (IR = 1.84), loss of tongue mobility (IR = 1.36) and loss of teeth (IR = 1.25) in the surgery were associated significantly with the study outcome. Conclusion: This study identified clinical predictors of food restrictions in patients undergoing treatment for oral and oropharyngeal cancer. This knowledge may contribute to improve patient care and management, and to develop interventions aimed at preventing nutritional depletion of these patients. (C) 2011 Elsevier Ltd. All rights reserved.

A integralidade da assist��ncia �� crian��a na percep����o do aluno de gradua����o em enfermagem

Estudo de abordagem qualitativa que objetivou identificar como alunos de gradua����o percebem a integralidade do cuidado da crian��a no seu processo de aprendizagem, em um Curso de Bacharelado em Enfermagem do interior paulista. Entrevistou-se 89 alunos em junho e dezembro de 2009. Os dados coletados foram analisados mediante an��lise de conte��do, sendo identificadas quatro tem��ticas. A integralidade �� vista como cuidado inteiro, envolvendo crian��a, fam��lia, condi����es de vida, meio ambiente. A institui����o de ensino prop��e inser����o precoce do aluno na realidade; este desmistifica o ideal de cuidado, deparando-se com o real. O professor instiga o aluno a refletir sobre sua pr��tica, para que esta fa��a sentido e tamb��m sejam apreendidos o saber e o fazer relacionado �� integralidade do cuidado �� crian��a.

A humaniza����o do cuidado na forma����o dos profissionais de sa��de nos cursos de gradua����o

A proposta desta pesquisa bibliogr��fica �� conhecer e analisar a produ����o cient��fica do campo da sa��de, em peri��dicos nacionais, sobre o ensino da humaniza����o do cuidado nos cursos de gradua����o. Realizou-se um levantamento bibliogr��fico na base de dados LILACS, utilizando o termo humaniza����o, com textos publicados a partir do ano de 2000 at�� 2010, sendo analisados 42 artigos. Da an��lise dos artigos emergiram tem��ticas centrais: Humaniza����o: algumas considera����es sobre seus conceitos; Universidade e as Diretrizes Curriculares Nacionais para os Cursos de Gradua����o na ��rea da Sa��de: rela����es com o ensino da humaniza����o; Mudan��as curriculares, conte��dos e estrat��gias de ensino-aprendizagem no cuidado humanizado e Sujeitos do processo ensino-aprendizagem: alunos e professores na aprendizagem da humaniza����o do cuidado. Alguns elementos te��rico-pr��ticos v��m sendo constru��dos sobre o ensino da humaniza����o no contexto de sa��de, sendo imprescind��vel, todavia, maiores investimentos na constru����o efetiva de novos modos de cuidar.

Notas cartogr��ficas do trabalho na Estrat��gia Sa��de da Fam��lia: rela����es entre trabalhadores e popula����o

Essa pesquisa-interven����o teve como objetivo cartografar os movimentos institu��dos e instituintes presentes no trabalho da Estrat��gia Sa��de da Fam��lia, no que tange a composi����o de suas pr��ticas cuidativas. O referencial te��rico metodol��gico fundamentou-se na an��lise institucional, linha esquizoanal��tica. Foram realizados encontros grupais com uma equipe para discutir o modo como realizavam os cuidados coletivos em a����o de educa����o permanente em sa��de. Os sujeitos da pesquisa foram trabalhadores da equipe e estudantes em atividade acad��mica no servi��o. A m��dia de participa����o foi de doze pessoas por encontro, sendo que se desenvolveram oito encontros no per��odo de mar��o a julho de 2010. Os dados foram agrupados em dois estratos imanentes: as rela����es da equipe e a rela����o com os usu��rios. Os estratos apontaram para o atravessamento das institui����es de educa����o, justi��a e da divis��o t��cnica e social do trabalho. A reflex��o coletiva em grupo mostrou-se potente, para desnaturalizar processos institu��dos e interrogar lugares, saberes e pr��ticas.

Articula����o das a����es e intera����o dos Agentes Comunit��rios de Sa��de na equipe de Sa��de da Fam��lia

O estudo de abordagem qualitativa teve como objetivo compreender as rela����es sociais entre o Agente Comunit��rio de Sa��de (ACS) e a equipe de Sa��de da Fam��lia (SF), nesse sentido, destaca-se a articula����o das a����es e a intera����o entre trabalhadores. Foram realizadas 23 observa����es participantes e 11 entrevistas semiestruturadas com uma equipe de SF em um munic��pio do interior de S��o Paulo, Brasil. Identificou-se que o ACS, como elo, desenvolve a����es operacionais para agilizar o trabalho da equipe. Como la��os de liga����o, desempenham a����es articuladas ao trabalho da equipe, interagindo com os trabalhadores, construindo planos assistenciais em comum, aproximando equipe e comunidade, adequando a����es de cuidado ��s necessidades das pessoas. Na pr��tica comunicativa, ao falarem de si, falam da pr��pria comunidade, pois �� seu representante e porta-voz na equipe. Concluiu-se que o Agente Comunit��rio de Sa��de pode ser um trabalhador estrat��gico se suas a����es compreenderem uma dimens��o mais pol��tica e social do trabalho em sa��de.

A educa����o em sa��de no cuidado de usu��rios do Programa Automonitoramento Glic��mico

O trabalho relata, de maneira sistematizada e cr��tica, a experi��ncia de um Projeto de Extens��o no per��odo de 2010 a 2011. Teve como foco a����es de educa����o em sa��de como estrat��gia para melhorar a ades��o das pessoas com diabetes mellitus e insulinodependentes, de uma Unidade B��sica de Sa��de do munic��pio de S��o Paulo, ao Programa Automonitoramento Glic��mico. Al��m disso, pretendeu-se contribuir na reorganiza����o do processo de trabalho em rela����o ao Programa na unidade. Foram utilizadas estrat��gias de educa����o em sa��de em grupos educativos e visitas domiciliares, assim, possibilitando cuidados mais singulares. Dados dos usu��rios foram organizados em planilha e em pastas para as equipes de Sa��de da Fam��lia, facilitando na identifica����o dos usu��rios, inclusive os faltosos, e auxiliando na descentraliza����o do cuidado. Com as a����es de educa����o em sa��de, pretendeu-se contribuir para um cuidado mais integral e emancipat��rio aos usu��rios, para um cont��nuo refletir dos trabalhadores quanto a suas pr��ticas.

��lcera venosa e terapia compressiva para enfermeiros: desenvolvimento de curso online

OBJETIVO: Descrever a elabora����o de um curso on-line sobre ��lcera venosa, com enfoque em terapia compressiva, para capacita����o de enfermeiros. M��TODOS: O desenvolvimento do curso on-line seguiu as fases de an��lise, design, desenvolvimento, implementa����o e avalia����o, baseadas no design instrucional contextualizado. RESULTADOS: O curso dividiu-se em dez m��dulos estruturados no ambiente virtual de aprendizagem Moodle. Caracterizou-se por uma proposta construtivista, visando ampliar a participa����o do aluno, disponibilizar as principais refer��ncias, revis��es e consensos, bem como utilizar objetos multim��dia e recursos did��ticos interativos. CONCLUS��O: O curso possibilita a capacita����o profissional do enfermeiro em terapia compressiva de maneira inovadora, flex��vel, interativa em diversos ambientes de cuidado.

O conhecimento de estrat��gias de comunica����o no atendimento �� dimens��o emocional em cuidados paliativos

O estudo objetivou investigar o conhecimento e a utiliza����o de estrat��gias de comunica����o no cuidado da dimens��o emocional do paciente sob cuidados paliativos. Com abordagem quantitativa, foi realizado entre agosto/2008 e julho/2009, junto a 303 profissionais de sa��de que trabalhavam ou tinham contato frequente com estes pacientes, por meio da aplica����o de question��rio. Os dados sofreram tratamento estat��stico descritivo e anal��tico. Os profissionais denotaram desconhecimento de estrat��gias de comunica����o, evidenciando-se diferen��a significativa (p-valor 0,0011) na compara����o entre sujeitos com e sem forma����o pr��via em cuidados paliativos, denotando que quem possui capacita����o paliativista conhece/utiliza mais estrat��gias comunicacionais na aten����o �� dimens��o emocional de seus pacientes. As estrat��gias mais citadas pelos sujeitos foram: escuta ativa, reafirma����es verbais de solicitude, uso de perguntas abertas e toque afetivo. Conclui-se que h�� pouco conhecimento e utiliza����o insatisfat��ria de estrat��gias de comunica����o, pelos profissionais de sa��de no cuidado �� dimens��o emocional de pacientes sob cuidados paliativos.