Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?

PURPOSE: This study aims to evaluate the association between the functional independence of children after postnatal spinal dysraphism correction and informal caregivers' burden. DESIGN AND METHODS: This is a cross-sectional study conducted in a child neurosurgery clinic at a University hospital. We included informal caregivers of children between six months and seven-and-a-half years old who were operated on for spinal dysraphism correction due to myelomeningocele. Functional independence was assessed using the Pediatric Evaluation of Disability Inventory (PEDI). Caregivers' burden was assessed through the Caregiver Burden Scale (CBS). RESULTS: Twenty-six caregivers were assessed, all mothers, aged 18-42years. Five provided child care and engaged in paid work. Regarding functional independence, 23.1% of the children were classified as needing supervision, 23.1% moderate assistance, 42.3% maximal assistance, and 11.5% total assistance. Median value for the overall CBS was 27.0 (22.0-53.0). The mean global CBS score was 1.42 and the mean PEDI score was 1.95. Correlations between PEDI and CBS scores were very close to zero. CONCLUSIONS: We found no association between the functional independence of children with myelomeningocele from 0 to 7years old and the burden of informal caregivers. PRACTICE IMPLICATIONS: The effect of functional independence of children with myelomeningocele may be balanced by the caregivers' resilience so that caregivers' burden is not dependent upon the child's independence.

Reabilitação de crianças e adolescentes com mielomeningocele: relato de experiência de atuação da enfermagem / Rehabilitación de niños y adolescentes con mielomeningocele: relato de experiencia de la práctica de enfermería / Rehabilitation of children and adolescents with myelomeningocele: nursing practice report

RESUMO O artigo foi desenvolvido por enfermeiras com mais de cinco anos de atuação, em uma rede de hospitais de reabilitação no Brasil, referência em toda a América Latina. O objetivo do presente estudo é de relatar a atuação de enfermeiras na reabilitação de crianças e adolescentes com mielomeningocele. As autoras realizaram reuniões presenciais e por videoconferência, discussões e troca de experiências até o consenso e validação do conteúdo. O relato foi organizado e dividido em três tópicos: capacitação para as atividades de vida diária; capacitação para a reabilitação vesicointestinal; capacitação para as atividades de vida prática: autonomia e participação. As famílias de indivíduos com mielomeningocele enfrentam dificuldades relacionadas à condição crônica e à escassez de serviço estruturado e humanizado que garanta e capacite quanto ao cuidado domiciliar. O desafio é fornecer subsídios que orientem profissionais na manutenção do cuidado domiciliar, melhorando a comunicação e promovendo a capacitação dos familiares das crianças e adolescentes com mielomeningocele.

RESUMEN El artículo fue desarrollado por enfermeras con más de cinco años de experiencia, en una red de hospitales de rehabilitación en Brasil, una referencia en América Latina. El objetivo de este estudio es dar a conocer la actuación de enfermeras en la rehabilitación de niños y adolescentes con mielomeningocele. Las autoras llevaron a cabo reuniones en persona y por videoconferencias, debates e intercambio de experiencias hasta el consenso y la validación del contenido. El relato fue organizado y dividido en tres temas: capacitación para las actividades de la vida diaria; capacitación para la rehabilitación vesicointestinal; capacitación para las actividades de la vida cotidiana: autonomía y participación. Las familias de las personas con mielomeningocele enfrentan dificultades relacionadas con la condición crónica y la falta de servicio estructurado y humanizado que garantice y capacite en cuanto al cuidado en el hogar. El reto es proporcionar subsidios que guíen a los profesionales en el mantenimiento de la atención domiciliaria, mejorando la comunicación y promoviendo la capacitación de los familiares de los niños y adolescentes con mielomeningocele.

ABSTRACT This article was developed by nurses with more than five years of practice, at a network of rehabilitation hospitals in Brazil, reference in Latin America. The objective of the present study is to report the activity of nurses in the rehabilitation of children and adolescents with myelomeningocele. The authors held face-to-facemeetings and videoconferences, discussions and exchange of experiences until a consensus was reached and the content was validated. The report was organized and divided into three topics: training for activities of daily living; training for vesicointestinal rehabilitation; training for activities of practical life: autonomy and participation. Families of individuals with myelomeningocele face difficulties related to the chronic condition and lack of structure and humanized services that guarantee and qualify home care. The challenge consists of providing subsidizes that guide professionals in the maintenance of home care, improving communication and training family members of children and adolescents with myelomeningocele.

Conhecimento das famílias de crianças e adolescentes com malformação neural acerca dos seus direitos em saúde / Families' knowledge about children and adolescents with neural malformation about their rights in health / Conocimiento de las familias de niños y adolescentes con malformación neuronal sobre sus derechosen materia de salud

Objetivo: Compreender o conhecimento das famílias de crianças e adolescentes com mielomeningocele sobre os seus direitos em saúde e identificar como tem ocorrido o processo de orientação acerca das políticas públicas de saúde. Métodos: Estudo qualitativo, realizado em hospital de referência pediátrica no Ceará, onde desenvolveram-se entrevistas semiestruturadas com 15 famílias, de setembro de 2013 a fevereiro de 2014. Os dados foram submetidos à análise categorial temática. Resultados: As famílias possuíam pouca informação acerca dos direitos de seus filhos, aspecto que esteve relacionado às lacunas existentes na orientação dos familiares por parte dos profissionais de saúde. Esse desconhecimento repercutiu em dificuldades econômicas, devido aos altos custos com os insumos necessários no cotidiano. Conclusão: Conclui-se ser necessário investir na formação dos profissionais, favorecendo a sua aquisição de competências para atuar junto às famílias, de modo a contribuir para a sua apreensão de conhecimentos e autonomia.

Objective: This study aimed to understand the information quality offered to the families of children and adolescents withmyelomeningocele about their rights in health and identify how has been occurred the process of guidance on public healthpolicies. Methods: Qualitative research conducted in a pediatric referral hospital in Ceará. Fifteen families participated in asemi-structured interview, developed from September 2013 to February 2014. The data were submitted to thematic categoricalanalysis. Results: Families had insufficient information about the rights of their children, aspect that is related to the gaps inthe orientation transmitted by health professionals and results in economic difficulties due to the high costs with the necessarysupplies in day to day. Conclusion: The study disclosed the need to expand the training of professionals, improving their skillsfor providing assistance to these families, contributing with information on its rights and autonomy.

Objetivo: Comprender el grado de conocimiento de las familias de niños y adolescentes con mielomeningocele con respecto asus derechos en materia de salud, e identificar como ha sido el proceso de orientación acerca de las políticas públicas de salud.Métodos: Estudio cualitativo realizado en hospital pediátrico de referencia en Ceará, donde se han desarrollado entrevistassemiestructuradas con 15 familias, de septiembre 2013 a febrero de 2014. Los datos fueron sometidos al análisis categorialtemático. Resultados: Las familias tenían información insuficiente sobre los derechos de sus hijos, aspecto que se relaciona conlas lagunas en la orientación transmitida por profesionales de salud y resulta en dificultades económicas debido a los altos costoscon los insumos necesarios en el día a día. Conclusión: Se necesita ampliar la capacitación de profesionales, confiriéndoleshabilidades para prestación de asistencia a las familias, contribuyendo con la información de sus derechos y autonomía.

Atuação no intra operatório da correção cirúrgica de mielomeningocele a "céu aberto" intraútero / Practice in the intraoperative period of surgical correction of a “sky open” myelomeningocele in utero

Relatar a experiência da atuação da enfermeira no intraoperatório de correção de mielomeningoceles a céu aberto intraútero. Método: Relato de experiência da prática em um hospital privado de São Paulo. Resultados: A enfermeira possui papel fundamental na previsão e na provisão de materiais e equipamentos para a cirurgia, no acompanhamento da paciente na admissão no Centro Cirúrgico e no auxílio durante o ato anestésico-cirúrgico. Conclusão: Fatores primordiais para o sucesso da cirurgia são o conhecimento e o domínio da equipe sobre as fases da cirurgia e o atendimento a pacientes gestantes, considerando as possíveis complicações que podem envolver a mãe ou o feto...

Maternal, fetal, and neonatal care in open fetal surgery for myelomeningocele.

Fetal myelomeningocele closure (fMMC) was demonstrated in a randomized, prospective clinical trial to improve outcomes for children diagnosed prenatally. Complex care of the maternal/fetal dyad undergoing fetal surgery requires a well-coordinated multidisciplinary team. Nurses in many roles are essential members of the team that cares for these women across the continuum. In this article we discuss the care of the woman, fetus, and family from initial contact through the discharge of the neonate.

[Care delivery to newborns with myelomeningocele according to Roy's Adaptation Model]. / Abordagem assistencial ao neonato portador de mielomeningocele segundo o modelo de adaptação de Roy.

This case study aimed to identify the Nursing diagnoses, addressing physiological aspects according to Roy's Adaptation Theory, of a baby with meningomyelocele hospitalized at a Neonatal Intensive Care Unit (NICU), and to elaborate pertinent nursing actions for these aspects. The study was developed at the NICU of the Maternity Teaching Hospital Assis Chateaubriand, located in Fortaleza-Ceará, Brazil, between December 2007 and March 2008, when a script was used to survey data. During the analysis, the following diagnoses were recognized: ineffective breathing pattern; imbalanced nutrition: less than body requirements; impaired skin integrity; risk for infection and disturbed sensory perception. The use of this theory permitted recognizing that the newborn can produce positive or negative responses to stimuli and that the implemented targets and interventions were important to replace ineffective by adaptive responses.

Abordagem assistencial ao neonato portador de mielomeningocele segundo o modelo de adaptação de Roy / Care delivery to newborns with myelomeningocele according to Roy's adaptation model / Abordaje asistencial al neonato portador de mielomeningocele según el modelo de adaptación de Roy

O objetivo deste estudo de caso foi identificar os diagnósticos de Enfermagem de um bebê portador de mielomeningocele, internado na Unidade de Terapia Intensiva Neonatal (UTIN), abordando os aspectos fisiológicos segundo a Teoria de Adaptação de Roy, e elaborar ações de enfermagem pertinentes a estes aspectos. O estudo foi desenvolvido na UTIN da Maternidade Escola Assis Chateaubriand, na cidade de Fortaleza, Ceará, Brasil, nos meses de dezembro de 2007 a março de 2008, quando foi utilizado um roteiro de levantamento de dados. Na análise, reconheceram-se os diagnósticos: padrão respiratório ineficaz; nutrição desequilibrada: menos do que as necessidades corporais; integridade da pele prejudicada; risco para infecção e percepção sensorial perturbada. A utilização desta teoria permitiu reconhecer que o RN pode desencadear respostas positivas ou negativas mediante estímulos, e que as metas e intervenções implementadas foram importantes para a substituição de respostas ineficazes por respostas adaptativas.

This case study aimed to identify the Nursing diagnoses, addressing physiological aspects according to Roy's Adaptation Theory, of a baby with meningomyelocele hospitalized at a Neonatal Intensive Care Unit (NICU), and to elaborate pertinent nursing actions for these aspects. The study was developed at the NICU of the Maternity Teaching Hospital Assis Chateaubriand, located in Fortaleza-Ceará, Brazil, between December 2007 and March 2008, when a script was used to survey data. During the analysis, the following diagnoses were recognized: ineffective breathing pattern; imbalanced nutrition: less than body requirements; impaired skin integrity; risk for infection and disturbed sensory perception. The use of this theory permitted recognizing that the newborn can produce positive or negative responses to stimuli and that the implemented targets and interventions were important to replace ineffective by adaptive responses.

El objetivo de este estudio de caso fue identificar los diagnósticos de Enfermería, abordando los aspectos fisiológicos según la Teoría de Adaptación de Roy, de un bebé portador de mielomeningocele, internado en la Unidad de Terapia Intensiva Neonatal (UTIN), y elaborar acciones de enfermería pertinentes a tales aspectos. El estudio fue desarrollado en al UTIN de la Maternidad Escuela Assis Chateubriand, en la ciudad de Fortaleza-Ceará-Brasil, en los mese de diciembre de 2007 a marzo de 2008, momento en el cual fue utilizado un cuestionario para la colecta de datos. En el análisis, se reconocieron los diagnósticos: patrón diagnóstico ineficaz, nutrición desequilibrada (inferior a las necesidades corporales), integridad de la piel afectada, riesgo de infección y percepción sensorial perturbada. La utilización de esta teoría permitió reconocer que el RN puede desencadenar respuestas positivas o negativas a través de estímulos, y que las metas e intervenciones implementadas fueron importantes en la sustitución de respuestas ineficaces por adaptativas.

Control local de la carga bacteriana en un úlcera por presión infectada. Mediante un apósito hidropolimérico con plata iónica / Local control treatment of bacteria found present in an infected bed sore by means of a hydropolymer dressing with ionic silver

Todas las heridas crónicas presentan microorganismos en su superficie y, por ello, su contaminación es universal e inevitable, pero la mayoría no está infectada. Es importante, entonces, afinar el diagnóstico de infección identificando los microorganismos que han conseguido profundizar en tejidos submarginales, con el fin de prevenir tratamientos antibióticos innecesarios o inadecuados y minimizar las posibles complicaciones. Una carga bacteriana elevada, próxima a los 105 UFC por gramo de tejido, aunque no produzca manifestaciones clínicas de infección, puede interferir con los mecanismos reparadores impidiendo la cicatrización de la herida. A causa de esta dificultad para identificar de manera exacta los microorganismos causantes de la infección, los pacientes con sepsis relacionada con UPP son habitualmente tratados de manera empírica con antibióticos de amplio espectro, potencialmente más tóxicos y a menudo más caros. Pero es importante restringir el uso de antibióticos locales en el tratamiento de las heridas crónicas y priorizar la utilización de la limpieza y los diversos métodos de desbridamiento para reducir la carga bacteriana. El uso de antibióticos sistémicos debe limitarse a las indicaciones precisas, dado que hoy en día disponemos de alternativas al tratamiento con antibióticos tópicos, principalmente los apósitos que contienen plata(AU)

Every chronic wound has microorganisms present on its surface and therefore, its contamination is universal and unavoidable, but the majority of these wounds are not infected. It is important, therefore, to refine the diagnosis of infection indentifying the microorganisms which have succeeded in gaining access to the submarginal tissues in order to be able to prevent unnecessary or inappropriate antibiotic treatment and to lessen possible complications. A high level of bacteria present, close to 105 «UFC» per gram of tissue, even though this does not manifest a clinical infection, might interfere with the repair mechanisms and impede cicatrization of the wound. Due to this difficulty to identify in a precise manner the microorganisms which cause an infection, those patients who have sepsis related to bed sores are habitually treated empirically with wide spectrum range antibiotics, potentially more toxic and often more expensive. But it is important to restrict the use of local antibiotics when treating chronic wounds and to prioritize the use of cleaning methods and diverse debridement methods in order to lower the presence of bacteria. The use of systemic antibiotics should be limited to precise indications, considering that today we have at our disposal alternate treatments with topical antibiotics, principally dressings which contain silver(AU)

Myelomeningocele, avocados, and rubber tree plants.

Infants with myelomeningocele and the nurses who care for them have something in common. Both are at higher risk than the general population for developing latex allergies. This article provides a review of the literature regarding latex production, latex allergic responses in children and adults, types of latex allergic reactions, and prevention of latex allergies.

Children with chronic continence problems: the challenges for families.

For families who are raising children with myelomeningocele, bowel and bladder incontinence presents unique challenges for everyday life. The Parenting and Childhood Chronicity model is used to describe the work of raising a child with a chronic condition in 6 areas, including medical care, adapted parenting, dealing with the systems, caring for siblings, maintaining relationships, and personal coping (keeping yourself going). This article provides an overview of the physiologic and developmental challenges inherent in this neural tube defect and illustrates the work that is involved in the child's care and the challenges of maintaining a balance in family life. Clinical implications are discussed, including the setting of appropriate expectations, providing parents with accurate information, ensuring that a focus on continence is not at the expense of other important aspects of the child's functioning, and supporting parents in their interaction with the school system. The medical team, consisting of nursing, urology, nephrology, and psychology working together, can be a strong support for families.

[Nursing care for myelomeningocele in infancy]. / Mielomeningocele en la infancia (I). Cuidados enfermeros.

After studying the factors which most often lead to the hospitalization, recuperation and treatment facilitating release from hospitalization of newborns affected by myelomeningocele, we present this treatment plan. One commences with an evaluation, after which various problems are detected. Once identified, establish priorities setting objectives to meet and their corresponding dates; continue by drawing up an action plan which lists those activities that help achieve one's objectives. The purpose of this plan is to provide individualized quality treatments as well as to create a relaxed, confidential atmosphere in which parents express their fears while becoming secure in their practice of those treatments their child needs in their home.

Perceptual accuracy and gender-related differences in parents of children with myelomeningocele.

The ability to perceive accurately is central to efficient and optimal use of health care resources. Many factors may affect parental ability to achieve this accuracy including concepts pertinent to perception theory and gender of the parent. Facets of person perception theory, gender-related differences between parents and suggestions for nursing care are discussed in the context of caring for a child with myelomeningocele.

The determinants of successful self-catheterization programs in children with myelomeningoceles.

Myelomeningocele is a birth defect that results in lifelong consequences for the child and family. One of the abnormalities that results from the defect is a neurogenic bladder. Most children with myelomeningoceles will require a clean intermittent catheterization (CIC) program for continence. Yet, many children do not have success with these programs. The purpose of this report is to identify in the literature components of a successful self-catheterization program. The importance of proper urinary management in children with myelomeningoceles will be discussed. Physiological, developmental, and motivational qualities that are present in successful self-catheterization programs will be identified. The importance of knowing when the child is ready to learn, how to know when the child is ready to learn, and different styles of teaching self-catheterization will be discussed. Finally, nursing implications for children on CIC programs will be described.