Maria Magda Ferreira Gomes Balieiro

Cuidado centrado na família no contexto da criança com deficiência e sua família: uma análise reflexiva

This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care.This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care.This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care. O CUIDADO CENTRADO NA FAMÍLIA NO CONTEXTO DA CRIANÇA COM DEFICIÊNCIA E SUA FAMÍLIA: UMA ANÁLISE REFLEXIVA RESUMO: Trata-se de uma reflexão teórico-filosófica sobre a perspectiva do Cuidado Centrado na Família e a prática da equipe de saúde no cuidado à criança deficiente e sua família. O nascimento de uma criança com deficiência provoca uma crise que atinge toda a família, abalando sua identidade, estrutura e funcionamento. A família se vê despreparada para enfrentar ou lidar com esse novo modo de ser família, pois o filho deficiente representa a quebra de expectativas, a alteração de papéis e a não-continuidade da família. O Modelo de Cuidado Centrado na Família pode oferecer subsídios para fortalecer a família, estimulando seu potencial e promovendo seu empoderamento. Embora esse modelo reconheça a família como unidade de cuidado, há uma lacuna entre o conhecimento teórico e a aplicação na prática clínica pelo profissional de saúde, revelando a necessidade de ampliar estudos que apontem direções sobre como realizar a transferência de conhecimento. DESCRITORES: Enfermagem familiar. Crianças com deficiência. Cuidados de enfermagem. CUIDADO CENTRADO EN LA FAMILIA EN EL CONTEXTO DE LOS NIÑOS CON DISCAPACIDADES Y SUS FAMILIAS: UNA REVISIÓN REFLEXIVA RESUMEN: Es una reflexión teórico-filosófica sobre la perspectiva del Cuidado Centrado en la Familia con la práctica del equipo de salud en el cuidado al niño con discapacidad y su familia. El nacimiento de un niño con discapacidad provoca una crisis que perjudica toda la familia, con problemas para su identidad, estructura y funcionamiento. La familia se muestra sin preparación para enfrentar ese nuevo modo de verse familia, pues el hijo representa una experiencia traumática que puede alterar el estado emocional entero de los miembros. Las presuposiciones del Cuidado Centrado en la Familia pueden fortalecer a la familia, estimular su potencial y promover el fortalecimiento familiar en su trayectoria con el hijo. Aunque con las presuposiciones del Cuidado Centrado en la Familia se reconozca a la familia como la unidad de cuidado, una laguna se observa entre el conocimiento teórico y de aplicación en la práctica clínica por los profesionales de salud, revelando la necesidad de ampliar los estudios que indiquen caminos hacia la transferencia de conocimientos. DESCRIPTORES: Enfermería de la familia. Niños con discapacidad. Atención de enfermería. 194

Cuidado centrado na família e sua aplicação na enfermagem pediátrica

Family-centered care is a challenge for nursing area, although the home care was described in the professional history since its origins. The definition of this approach, its principles and the discussion about its application in pediatric nursing are described in the text aiming to lead to a reflection about the possibilities of family care, by means of attention to the individual and to the family unit. Among the several areas, the pediatric nursing is highlighted with researches and the development of theoretical assumptions.El cuidado centrado en la familia tiene representado un desafio para el area de enfermeria, a pesar de los cuidados domiciliares ya tengan sido descriptos desde sus origenes en la historia de la profesion. La definicion de este abordaje, sus principios y la discusion de su aplicacion en la enfermeria pediatrica estan descriptos en el texto con el objetivo de reflexionar acerca de las posibilidades de cuidado a la familia por medio de atencion al individuo y a la unidad familiar. De entre las distintas areas, la enfermeria pediatrica viene destacandose con pesquisas y desarrollo de los presupuestos teoricos.

Adaptação cultural e validação para a língua portuguesa da Parental Stress Scale: Neonatal Intensive Care Unit (PSS:NICU)

objective: To translate, perform cultural adaptation and validation of the scale Parental Stress Scale: Neonatal Intensive Care Unit (PSS: NICU) for the Portuguese language. Methods: We used the descriptive validation method of measurment instruments, based on the steps proposed by Guillemin et al. The reliability analysis was performed by means of the test - retest method and internal consistency. In the clinical validation, 163 parents of newborns hospitalized in the Neonatal Intensive Care Unit (NICU) were included. results: The intraclass correlation coeffi cients were around 0.70, showing good stability between the two assessments. Factor analysis by principal components method used the same criteria as the original scale, with Varimax rotation, with an appropriate degree of variance of 57.9%. The highest stress levels of parents were obtained in the subscale, “changing role of parents.” Conclusion: The PSS: NICU in the Portuguese version is a valid and reliable tool for evaluating the stress of parents with children hospitalized in the NICU.objective: To translate, perform cultural adaptation and validation of the scale Parental Stress Scale: Neonatal Intensive Care Unit (PSS: NICU) for the Portuguese language. Methods: We used the descriptive validation method of measurment instruments, based on the steps proposed by Guillemin et al. The reliability analysis was performed by means of the test retest method and internal consistency. In the clinical validation, 163 parents of newborns hospitalized in the Neonatal Intensive Care Unit (NICU) were included. results: The intraclass correlation coeffi cients were around 0.70, showing good stability between the two assessments. Factor analysis by principal components method used the same criteria as the original scale, with Varimax rotation, with an appropriate degree of variance of 57.9%. The highest stress levels of parents were obtained in the subscale, “changing role of parents.” Conclusion: The PSS: NICU in the Portuguese version is a valid and reliable tool for evaluating the stress of parents with children hospitalized in the NICU.

A experiência da família ao interagir com o recém-nascido prematuro no domicílio

Estudo qualitativo que teve o objetivo de compreender como se da a interacao da familia com o recem-nascido prematuro no domicilio, nas primeiras semanas apos a alta hospitalar. O Interacionismo Simbolico foi o referencial teorico, e a Teoria Fundamentada nos Dados, o metodologico. Os dados foram coletados por observacao participante e entrevistas com cinco familias. A analise comparativa dos dados permitiu compreender que ter um filho, mesmo que prematuro, significa a realizacao de um sonho, cuja concretizacao faz com que a familia vivencie dias de tristeza, angustia e dor decorrentes da prematuridade e hospitalizacao. Com a melhora clinica do bebe, ela se prepara para assumir seu cuidado no domicilio; acolhe-o com amor e carinho; vivencia mudancas no seu modo de ser, pensar e viver e sente-se recompensada. A compreensao dessa experiencia oferece subsidios para repensar a assistencia de enfermagem a familia no seguimento do recem-nascido prematuro.Resumen El presente estudio de tipo cualitativo tuvo por objetivo comprender la forma en que se presenta la interacción de la familia con el recién nacido prematuro atendido en el hogar, durante las primeras semanas después del alta hospitalaria. El referencial teórico de esta investigación fue el Interaccionismo Simbólico y metodológico en la Teoría Fundamentada de los Datos. Los datos fueron recolectados por medio de la observación participante y de entrevistas con cinco familias. El análisis comparativo de los datos permitió comprender que tener un hijo, aunque sea prematuro, significa la realización de un sueño, cuya concretización hace que la familia viva días de tristeza, angustia y dolor como consecuencia del nacimiento prematuro y de la hospitalización del bebé. Con la mejoría clínica del infante, la familia se prepara para asumir su cuidado en el hogar; lo acoge con amor y cariño; vivencia cambios en su modo de ser, pensar y vivir y se siente recompensada. La comprensión de esta experiencia ofrece contribuciones que sirven para replantear la asistencia que la enfermería ofrece a familia durante el cuidado del recién nacido prematuro. Palabras-c lave: Enfermería neonatal. Prematuro. Enfermería de la familia. 1Enfermeira. Especialista em Enfermagem Pediátrica. Enfermeira do Depar tamento de Pediatria da Irmandade de Misericórdia da Santa Casa de São Paulo. Supervisora de Estágio de Ensino Clínico da Disciplina Enfermagem em Saúde da Criança e Adolescente da Universidade Nove de Julho UNINOVE. Brasil. E-mail: suelyfonsecacosta@ig.com.br, 2 Enfermeira. Doutora em Enfermagem. Professor Associado do Depar tamento de Enfermagem da UNIFESP. Brasil.E-mail: caribeiro@unifesp.br, 3 Enfermeira. Doutora em Enfermagem. Professor Adjunto do Departamento de Enfermagem da UNIFESP. Brasil. Email: rihborba@unifesp.br, 4 Enfermeira. Doutora em Enfermagem. Professor Adjunto do Depar tamento de Enfermagem da UNIFESP. Brasil. E-mail: mmfgbalieiro@unifesp.br PESQUISA RESEARCH INVESTIGACIÓN This qualitative study aimed at understanding how the family interacts with the premature newborn at home during the first weeks after discharge from hospital. The Theoretical and Methodological Frameworks used were the Symbolic Interactionism and the Grounded Theory, respectively. Data were collected by means of participant observation and interviews with 5 families. Data comparative analysis enabled us to understand that having a child, even if he/ she is premature, means a dream come true, whose realization causes the family to experience sadness, anguish and pain due to prematurity and hospitalization. With the baby’s clinical improvement, the family gets ready to take over his/ her care at home, receives him/ her with love and care, experiences changes about their way to behave, think and live and feels rewarded. Understanding this experience provides subsides to rethink the nursing assistance given to the family during the follow-up of premature newborns. Suely Alves Fonseca Costa La experiencia de la familia al interactuar con el recién nacido prematuro en el hogar Regina Issuzu Hirooka de Borba3

Workers' knowledge and perception regarding noise in the neonatal unit

The objective of the study was to assess the knowledge and perception of professionals working in a Neonatal Intensive Care Unit (NICU) regarding the repercussions of noise on the neonates, families and workers, prior to the implementation of an educational program. This qualitative descriptive study was conducted in a NICU of a São Paulo hospital with 101 professionals. A questionnaire was used for data collection, and chi-square and Students t test were used to determine the association between variables. The workers described the NICU as very noisy (44.9%); they noticed the effects of noise during and after their work shift (67.4%) and used strategies to reduce noise. Despite not being familiar with legislation regarding noise in the hospital, the workers identify its repercussions on themselves, the neonates and families. Results indicate the need to teach the staff about legislation and noise prevention, as well as reorganize healthcare practices and Neonatal Intensive Care Unit facilities.The objective of the study was to assess the knowledge and perception of professionals working in a Neonatal Intensive Care Unit (NICU) regarding the repercussions of noise on the neonates, families and workers, prior to the implementation of an educational program. This qualitative descriptive study was conducted in a NICU of a Sao Paulo hospital with 101 professionals. A questionnaire was used for data collection, and chi-square and Students t test were used to determine the association between variables. The workers described the NICU as very noisy (44.9%); they noticed the effects of noise during and after their work shift (67.4%) and used strategies to reduce noise. Despite not being familiar with legislation regarding noise in the hospital, the workers identify its repercussions on themselves, the neonates and families. Results indicate the need to teach the staff about legislation and noise prevention, as well as reorganize healthcare practices and Neonatal Intensive Care Unit facilities.

Efeito do "horário do soninho" para redução de ruído na unidade de terapia intensiva neonatal

Objective: To identify and compare the Sound Pressure Levels (SPL) inside the incubators at an NICU with and without the quiet-time intervention. Methods: Quantitative, descriptive research project conducted at the NICU of a university hospital. A Quest 400 noise dosimeter was used for data collection. The sample comprised 261 hours of registers. Results: The results show that at the times pre-established for the interventions, the highest average equivalent noise pressure level (Leqaverage) were 58.5 dBA in room A and 53.1 dBA in room B. During other periods, a mean equivalent continuous noise level (Leqaverage) of 79.7 and 74.3 dBA was measured in both rooms, respectively. Conclusion: During the intervention periods, the SPLs are in accordance with the levels recommended by regulatory agencies, which reinforces the efficacy of quiet time. However, results point to the need to improve the acoustic profile of the neonates micro and macro environments, since these work as an interrelated system.

Effect of "quiet time" to reduce noise at the neonatal intensive care unit

Objective: To identify and compare the Sound Pressure Levels (SPL) inside the incubators at an NICU with and without the quiet-time intervention. Methods: Quantitative, descriptive research project conducted at the NICU of a university hospital. A Quest 400 noise dosimeter was used for data collection. The sample comprised 261 hours of registers. Results: The results show that at the times pre-established for the interventions, the highest average equivalent noise pressure level (Leqaverage) were 58.5 dBA in room A and 53.1 dBA in room B. During other periods, a mean equivalent continuous noise level (Leqaverage) of 79.7 and 74.3 dBA was measured in both rooms, respectively. Conclusion: During the intervention periods, the SPLs are in accordance with the levels recommended by regulatory agencies, which reinforces the efficacy of quiet time. However, results point to the need to improve the acoustic profile of the neonates micro and macro environments, since these work as an interrelated system.

Adaptação transcultural de instrumentos de medida do cuidado centrado na família

ObjectiveTo assess the cross-cultural adaptation to Brazilian Portuguese of two instruments for the measurement of family-centered care, one for parents and one for healthcare professionals.MethodsMethodological study of cross-cultural adaptation following the phases of translation, back-translation, analysis by experts, pre-test, test-retest and psychometric analysis after the application of the instrument to 100 parents of hospitalized children and 100 professionals from pediatric units of a teaching hospital.ResultsThe evaluation of experts in both instruments showed a Kappa of 0.85 and 0.93 respectively. At pretest, participants suggested no changes. Test-retest reliability was good for both stability indexes. Factor analysis explained 43.9% of the total variance in the parents instrument and 43.4% in the staff instrument. Cronbachs alpha coefficient was 0.723 for the parents instrument and 0.781 for the staff instrument.ConclusionThe instruments adapted to the Brazilian culture presented reliability, stability and good internal consistency, with potential to be used in the pediatric clinical practice.

Percepção do cuidado centrado na família em unidade neonatal

Doi: 10.5902/2179769216340 Objetivo: estudo com o objetivo de compreender a percepcao da familia do recem-nascido hospitalizado em unidade neonatal em relacao ao cuidado prestado pela equipe de saude. Metodo: pesquisa qualitativa, descritiva, que utilizou como referencial teorico os pressupostos do Cuidado Centrado no Paciente e Familia. A coleta de dados foi realizada por meio de entrevistas semiestruturadas com sete familiares de recem-nascidos internados em uma unidade neonatal de um hospital universitario em 2011. Resultados: Os dados foram analisados conforme a Analise Qualitativa de Conteudo, emergindo duas categorias analiticas: satisfacao com o cuidado na unidade e dificuldades enfrentadas em relacao a equipe e a hospitalizacao. Conclusao: ha uma distância entre a teoria e a pratica, sendo o Cuidado Centrado no Paciente e Familia um ideal a ser alcancado.

Family-centered care and its application in pediatric nursing

Family-centered care is a challenge for nursing area, although the home care was described in the professional history since its origins. The definition of this approach, its principles and the discussion about its application in pediatric nursing are described in the text aiming to lead to a reflection about the possibilities of family care, by means of attention to the individual and to the family unit. Among the several areas, the pediatric nursing is highlighted with researches and the development of theoretical assumptions.El cuidado centrado en la familia tiene representado un desafio para el area de enfermeria, a pesar de los cuidados domiciliares ya tengan sido descriptos desde sus origenes en la historia de la profesion. La definicion de este abordaje, sus principios y la discusion de su aplicacion en la enfermeria pediatrica estan descriptos en el texto con el objetivo de reflexionar acerca de las posibilidades de cuidado a la familia por medio de atencion al individuo y a la unidad familiar. De entre las distintas areas, la enfermeria pediatrica viene destacandose con pesquisas y desarrollo de los presupuestos teoricos.